Documenti di Didattica
Documenti di Professioni
Documenti di Cultura
Nirbhay N. Singh
Editor
Handbook of
Evidence-Based
Practices in Intellectual
and Developmental
Disabilities
Evidence-Based Practices
in Behavioral Health
Series Editor
Nirbhay N. Singh
Medical College of Georgia
Augusta University
Augusta, GA, USA
Nirbhay N. Singh
Editor
Handbook
of Evidence-Based
Practices in Intellectual
and Developmental
Disabilities
Editor
Nirbhay N. Singh
Medical College of Georgia
Augusta university
Augusta, GA, USA
ISSN 2366-6013
ISSN 2366-6021 (electronic)
Evidence-Based Practices in Behavioral Health
ISBN 978-3-319-26581-0
ISBN 978-3-319-26583-4 (eBook)
DOI 10.1007/978-3-319-26583-4
Library of Congress Control Number: 2016938913
Springer International Publishing Switzerland 2016
This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or
part of the material is concerned, specically the rights of translation, reprinting, reuse of
illustrations, recitation, broadcasting, reproduction on microlms or in any other physical way,
and transmission or information storage and retrieval, electronic adaptation, computer software,
or by similar or dissimilar methodology now known or hereafter developed.
The use of general descriptive names, registered names, trademarks, service marks, etc. in this
publication does not imply, even in the absence of a specic statement, that such names are
exempt from the relevant protective laws and regulations and therefore free for general use.
The publisher, the authors and the editors are safe to assume that the advice and information in
this book are believed to be true and accurate at the date of publication. Neither the publisher nor
the authors or the editors give a warranty, express or implied, with respect to the material
contained herein or for any errors or omissions that may have been made.
Printed on acid-free paper
This Springer imprint is published by Springer Nature
The registered company is Springer International Publishing AG Switzerland
Preface
There has been an impressive growth in the eld of intellectual and developmental disabilitiesin diagnosis, assessment, interventions, and quality of
life issuesand there is an urgent need to draw together evidence-based ndings from across this eld. Philosophy and advocacy continue to be very
strong forces that drive the care of people with intellectual and developmental
disabilities. For example, person-centered individual support plans preceded
any evidence for their efcacy or effectiveness and, even now, the evidence is
somewhat slim. Indeed, empirical evidence often tries to catch up with
philosophy-driven practice. In addition, fads such as facilitated communication and secretin continue to be used by some professionals. Much has been
written about fads and, due to the skepticism generated, proponents of new
approaches and treatments often have to weather the scientic angst during
the proof-of-concept phases of their clinical treatment and research. This
delays effective interventions being used in a timely manner with those who
so desperately need it.
This has led to an acute need for a comprehensive handbook that maps the
evidence base for all aspects of care for people with intellectual and developmental disabilities. The current status of approaches to their care is quite
diverse and impressive, both in the depth and the breadth of assessment and
interventions. As a veteran in this eld, when I decided to bring together what
we currently know about the care of these individuals, I was motivated to
integrate the philosophy and science in this eld. I wanted to provide a comprehensive guide that is based on as much of the evidence base as possible,
but I also did not want to forget the individual who would be receiving the
care. Relying on the evidence base to inform care is one thing, but delivering
the care in a mindful, supportive way that enhances the individuals quality of
life in the short and long term is quite another. It requires a dance, where
evidence-base partners with quality of care and the caregivers make an emotional connection with people whom they care for on a daily basis. This
applies regardless of whether the caregiver is a parent, family member, paid
staff, teacher, friend, or volunteer.
The Handbook of Evidence-Based Practices in Intellectual and
Developmental Disabilities is an attempt to bring together both the philosophy and science of intellectual and developmental disabilities. I am aware
that given the vast swath of the eld many issues remain to be resolved and
that an entire eld of endeavor cannot be captured in a single handbook. What
I envisioned was that a careful reader would have a relatively enhanced, if not
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Preface
viii
a more complete, view of the many facets of this eld and that a clinician
would gain considerable insight into improving the quality of life of individuals with intellectual and developmental disabilities. It is my hope that this
clinical handbook will serve as a comprehensive reference, assisting clinicians, caregivers, and researchers to understand, evaluate, and ultimately
enrich the lives of people with intellectual and developmental disabilities.
A clinical handbook of this scope requires the diligent efforts of a great
many people. I would like to thank the contributors who wrote uniformly
excellent chapters and for their patience with the editorial process. If there is
any merit to this book, it is theirs. I also thank those others who have helped
me with this book, especially those colleagues, friends, and family members
I have neglected in the process. I am most grateful to Judy Singh at home and
Judy Jones at Springer for making this book possible. Finally, I thank my
clients, colleagues, and teachers who taught me virtually everything I know,
but, of course, not everything they know!
Augusta, GA, USA
Nirbhay N. Singh
Contents
Part I
Foundations
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Functional Assessment..................................................................
Raymond G. Miltenberger, Sarah E. Bloom, Sindy Sanchez,
and Diego A. Valbuena
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Part II
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Contents
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Part III
Evidence-Based Interventions
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Self-Injury...................................................................................... 635
Theodore A. Hoch, Carl R. Dzyak, and Brian L. Burkhalter
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Contents
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Erica Dashow, B.A. is currently pursuing her doctorate in clinical psychology at Rutgers University. She is a behavioral consultant at the Douglass
Developmental Disabilities Center. Her research interests include feeding
disorders as well as the assessment and treatment of problem behavior in
individuals with autism spectrum disorders.
Shoumitro Deb, M.B.B.S., F.R.C.Psych., M.D. is a Clinical Professor of
Neuropsychiatry at the Imperial College London, UK, Department of
Medicine. He has led the development of the international and the national
psychotropic medication use guide for problem behaviors among adults with
intellectual disabilities (ID). He led the development of the European Guide
for the assessment and diagnosis of mental disorders among adults with
ID. He was involved in the development of the evidence-based treatment
guide for people with ID in the UK National Health Service. He developed
the patient and carer determined outcome measures for patients with traumatic brain injury. He developed a screening instrument for dementia in people with ID that has been translated into several languages for use worldwide.
He has over 200 publications, done over 200 conference presentations nationally and internationally, and ran a number of M.Sc. courses.
Stephanie DeSpain, M.S. is an Instructional Assistant Professor and research
assistant in the Department of Special Education at Illinois State University.
She is currently pursuing an Ed.D. in Special Education at Illinois State
University, with research interests in the areas of support needs, Quality of
Life, and services for adults with intellectual disability and related developmental disabilities. Prior to joining Illinois State University, she conducted
Child Find screenings for a special education cooperative and was a special
education teacher with students at the elementary and secondary levels.
Robert Didden, Ph.D. is Professor of Intellectual Disability, Learning and
Behaviour at the Behavioural Science Institute of the Radboud University
Nijmegen, the Netherlands. As a healthcare psychologist, he is afliated with
Trajectum, a facility for individuals with mild intellectual disability and
severe behavioral disorders. His clinical and research interests include assessment and treatment of substance abuse and addiction, aggressive behaviors,
sleep disorders, and trauma/PTSS in individuals with mild intellectual disability. He is associate editor of Journal of Developmental and Physical
Disabilities, Review Journal of Autism and Developmental Disorders, and
Current Developmental Disorders Report.
Dennis R. Dixon, Ph.D. is the Chief Strategy Ofcer at the Center for Autism
and Related Disorders and serves on the board of directors for Autism
Research Group, a not-for-prot organization dedicated to conducting
research that has a real-life impact in the lives of families living with autism
spectrum disorder. He received his doctorate in clinical psychology from
Louisiana State University with a focus in developmental disabilities. He
completed a postdoctoral fellowship at the Johns Hopkins University School
of Medicine and specialized in the treatment of severe challenging behaviors.
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at risk, disability and family support, bullying and autism spectrum disorder,
and arts-based inquiry.
Jina Jang, M.A. is a doctoral student in clinical psychology at Louisiana
State University. Her research interests include early identication and intervention for autism spectrum disorders and other developmental disorders,
with particular emphasis on factors such as cultural differences impacting
diagnosis and treatment.
C. Merle Johnson, Ph.D. is Professor of Psychology at Central Michigan
University. His research concerns behavioral pediatrics, including sleep problems for children. His research in organizational behavior management concerns performance feedback and reinforcement contingencies in the
workplace. He was co-editor for the Handbook of Organizational
Performance: Behavior Analysis and Management and Integrating
Organizational Behavior Management with Industrial and Organizational
Psychology.
Edwin Jones, Ph.D. is a Service Development Consultant at Abertawe Bro
Morgannwg University Health Board, UK. He is closely involved in service
improvement, training, and policy development, focusing on Positive
Behavioural Support. He is an Honorary Fellow at the University of South
Wales, a Visiting Lecturer at the International University of Catalonia,
Barcelona, an editorial board member of several journals, and chairs the All
Wales Challenging Behaviour Community of Practice. Previously he was a
Senior Research Fellow at the Welsh Centre for Learning Disabilities where
he developed Active Support. His other main interests include Positive
Behavioural Support and Practice Leadership.
David A. Klingbeil, Ph.D. is an Assistant Professor in the School Psychology
program at the University of WisconsinMilwaukee. He received his doctorate from the University of Minnesota. His current research interests include
identifying evidence-based practices and modifying extant evidence-based
practices to increase their usability for urban schools.
Leah J. Koehler, M.S., B.C.B.A. is a doctoral student in the area of Applied
Behavior Analysis at the University of Florida, in the Department of
Psychology. Her research interests include assessment and treatment of
severe problem behavior, prevention of problem behavior, and application of
behavior analysis to broader social issues and policy.
Todd G. Kopelman, Ph.D., B.C.B.A. is an Assistant Professor in the
Department of Psychiatry at the University of Iowa Hospitals and Clinics in
Iowa City, Iowa. He is a licensed psychologist and Board Certied Behavior
Analyst. He has served as the project coordinator on three federal grants evaluating the efcacy of telehealth to coach caregivers to conduct behavioral
assessment and treatment with young children with autism spectrum disorder
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Anne MacDonald is the manager of the Positive Behavior Support Team for
The Richmond Fellowship Scotland, a provider of community-based social
care in Scotland. She is currently completing a Ph.D. in Positive Behavior
Support at the Tizard Centre, University of Kent in England. Her research
interests include the implementation of Positive Behavior Support both
within ordinary community settings and with family careers.
Christopher J. Manente, Ph.D., B.C.B.A. is an Assistant Professor of
Education at Caldwell University and a behavioral consultant working in
schools across New Jersey. Previously, he served as the Senior Program
Coordinator of Adult Services at the Douglass Developmental Disabilities
Center at Rutgers University. Dr. Manente has 10 years of experience working with individuals with autism spectrum disorders. He has authored articles
in peer-reviewed journals and has presented at both local and national conferences. Dr. Manentes research interests include the assessment and treatment
of challenging behavior, the ethics of using punishment in treatment, behavioral economics, and the role of choice in treatment. In addition, Dr. Manente
is a strong advocate for the advancement of community-based educational,
vocational, and residential opportunities for older learners with autism.
Peter B. Marschik, D.Phil., Ph.D., D.Msc. is Associate Professor at the
Medical University of Graz, Austria, and the Center of Neurodevelopmental
Disorders (KIND) at the Karolinska Institute, Stockholm, Sweden. Dr.
Marschik is also the Director of the Research Unit iDNinterdisciplinary
Developmental Neuroscience at the Medical University of Graz. His interdisciplinary research in the eld of developmental neuroscience focuses on neurodevelopmental disorders, neurophysiology, development of neural
functions, neuroethology, neurocognitive research/cognitive brain research,
neurolinguistics/psycholinguistics, development of laterality, general movement assessment, genetic disorders, communication disorders, and speech
and language development.
David McAdam, Ph.D., B.C.B.A-D. received his Ph.D. in Behavior Analysis
and Developmental Disabilities from the University of Kansas. He also was a
postdoctoral fellow at the Kennedy Krieger Institute at the Johns Hopkins
University School of Medicine. His current interest includes behavioral interventions for pica, elopement, and repetitive behavior.
Laura Lee McIntyre, Ph.D., B.C.B.A-D. is Professor and Director of
Graduate Studies in School Psychology in the Department of Special
Education and Clinical Sciences and Associate Director of the Child and
Family Center at the Prevention Science Institute at the University of Oregon.
Her research interests involve assessment and home- and school-based interventions for young children with developmental and behavioral problems.
She is President of the Intellectual and Developmental Disabilities Division
of the American Psychological Association and serves as Associate Editor
for the American Journal on Intellectual and Developmental Disabilities
and the Journal of Mental Health Research in Intellectual Disabilities.
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Contributors
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Contributors
Contributors
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Contributors
Contributors
xli
Implementing Evidence-Based
Practices Wisely
Nirbhay N. Singh
Introduction
People with intellectual and developmental disabilities (IDDs) face many challenges, above and
beyond the limitations imposed on them by their
compromised abilities. The sequelae of their disabilities often manifest as medical, physical,
learning, and behavioral challenges. Of these,
learning and behavioral challenges occasion
greater dilemmas for caregivers in terms of service
delivery than their medical and physical disabilities. The overriding issue is how to best provide
services without compromising self-determination
and choices that contribute to the well-being of the
individuals. Unfortunately, the history of service
provision for people with IDD is replete with
examples of approaches that, in hindsight, we
have come to view as less than positive.
Services provided to people with IDD can be
broadly categorized as those focused on their general well-being, as documented in their individual
support plans (ISPs), and those aimed at managing or treating their challenging behaviors (e.g.,
aggression, property destruction, pica, rumination).
ISPs eventually degenerate into plans that institutionalize care, often for the convenience of the
caregivers and service provider, and with an
emphasis on safety and a restricted lifestyle. For
example, for people with multiple medical and
cognitive challenges, safety is all about avoiding
potential risks, such as bedsores, falls, and other
medical complications, rather than on providing
quality of care that centers on making their life
more meaningfula life that maximizes their
inherent potential. It is as if ones disability
denes whether a life of worth is possible and
where assessment of this possibility resides with
the caregiver and not the care receiver. But people with IDD expect more from life than safety
and protection, regardless of the level of their
abilities. Indeed, many individuals with IDD
resist this kind of benign care by engaging in
challenging behaviors and not cooperating in rigidly scheduled activities. However, when they
engage in challenging behaviors, further restrictive treatments are prescribed. Caregivers appear
to have forgotten that their role must move
beyond ensuring health and safety to supporting
the persons well-being and aspirations.
The manner in which caregivers provide services often falls into well-worn grooves of automaticity, built through mindless mechanical repetition
over time. They nd moving onto a new system of
support very difcult, which often leads to their
covert and overt resistance. Some caregivers seem
bereft of curiosity about what people with IDD
care about in life and how to support these individuals to experience the joys that matter to them.
They confuse care with treatmentthe programs
or plans developed by the treatment team that prescribe exactly what the individual needs to do
throughout the day, 7 days a week, and how to deal
with deviations from those prescriptions. Changing
this system of institutionalized treatment planning
and rigid rules for implementation requires overcoming the caregivers inertia and fear of change.
Making the lives of people with IDD meaningful
and not merely safe requires creativity and imagination. It requires commitment to a singular aim
to make their lives worth living and to support
them to be fully engaged with their lives, within the
parameters nature has imposed on them (Thomas,
N.N. Singh
Evidence Base
The genesis of evidence-based practices can be
traced to a series of papers published in 1981 by
staff in the Department of Clinical Epidemiology
and Biostatistics at McMaster University,
designed to teach physicians how to critically
review medical research literature (Guyatt &
N.N. Singh
Evidence-Based Services
Regardless of the challenges in determining
evidence-based practices, there is an enormous
amount of good research that can be used to
inform the quality of services caregivers can
deliver in the eld of intellectual and develop-
mental disabilities. The Handbook of EvidenceBased Practices for Individuals with Intellectual
and Developmental Disabilities gathers most of
this research in one place so that clinicians can
have access to what we know and how we can
translate this into practice (Singh, 2016). But,
there are caveats that are important to bear in
mind when advocating or using evidence-based
research in practice. First, regardless of how good
the evidence is, no evidence-based practice will
meet the diverse needs of all individuals with
IDD. Evidence-based practice does not mean that
we have sound research showing that the practice
will be effective with all members of a given population. Indeed, the outcome of research is inherently probabilistic rather than absolute, and
aggregating such research to derive evidencebased practice does not change this basic fact.
In practical terms, it means that caregivers should
always be willing to accept that a given evidencebased practice might not be effective for some of
their clients. For these nonresponders, caregivers
must search for alternative methods that can
produce the required effects.
Second, we know far more about evidencebased practice than about implementation of these
practices. Indeed, there is minimal research documenting how these practices are implemented and
what outcomes they produce. In the eld of intellectual and developmental disabilities, implementation is a multifaceted and challenging endeavor
because of the many stakeholders that have a say
in what and how interventions are implemented.
Often, there are institutional barriers to implementing new interventions and programs because
change means altering time-honored institutionalized practicespractices that have been developed over time that often are for the convenience
of the staff and administration. When there is no
buy-in from the administration, there is little likelihood that clinicians and caregivers will implement new interventions and programs with
sufcient delity to produce meaningful outcomes. To ensure adherence, the core components
of evidence-based practices need to be implemented at the institutional level; change agents
should not rely on the expertise and goodwill of
selected individual clinicians and caregivers to
effect the changes.
N.N. Singh
It is useful to remember that few evidencebased practices actually get implemented in realworld settings (Katz, 2010). On the one hand,
current estimates suggest that less than half of
evidence-based practices in health care are ever
implemented and that it takes about 20 years for
research in health or mental health to be translated into actual service delivery (Brekke, Ell, &
Palinkas, 2007; Glasgow & Emmons, 2007). On
the other hand, research suggests that between 30
and 45 % of people receiving mental health care
do not receive care that is based on scientic evidence and between 20 and 25 % receive care that
either they do not need or is potentially harmful
to them (Grol, 2008; Grol & Grimshaw, 2003).
So, how do we increase implementation of
evidence-based practices in the eld of intellectual and developmental disabilities? The answer
may lie in evidence-based interventions that can
realistically be made to work. Interventions that
are typically implemented are those that can (a)
reach large numbers of people, especially those
who can most benet, (b) be broadly adopted by
different settings (worksite, school, health, or
community), (c) be consistently implemented by
different staff members with moderate levels of
training and expertise, and (d) produce replicable
and long-lasting effects (and minimal negative
impacts) at a reasonable cost (Glasgow,
Lichtenstein, & Marcus, 2003, p. 1264). Those
that are too intensive or effortful, and not manualized, are much less likely to be implemented
(Glasgow & Emmons, 2007).
In sum, evidence-based practice is a guide
that must be used wisely with practice-based evidence; it is not a panacea for all the ills that befall
people. It must be used judiciously, with wisdom, loving kindness, and compassion for the
care receiver. The caregiver must be present for
the care receiver on a moment-by-moment basis
so that subtle or obvious changes can be made to
the evidence-based practice, depending on what
the care receiver is giving back to the caregiver
(Jackman, 2014; Singh & Jackman, 2016). We
must use evidence-based practices to enhance
not only the experiential interests of individuals
with IDDengaging in activities that one nds
References
Brekke, J., Ell, K., & Palinkas, L. (2007). Translational
science at the National Institute of Mental Health: Can
social work take its rightful place. Research on Social
Work Practice, 17, 123133.
Cook, B. G., & Cook, S. C. (2013). Unraveling evidencebased practices in special education. Journal of
Special Education, 47, 7182.
Dworkin, R. (1994). Lifes dominion: An argument about
abortion, euthanasia, and individual freedom.
New York, NY: Vintage.
Flay, B. R., Biglan, A., Boruch, R. F., Castro, F. G.,
Gottfredson, D., Kellam, S., Ji, P. (2005). Standards
of evidence: Criteria for efcacy, effectiveness and
dissemination. Prevention Science, 6, 151175.
Glasgow, R. E., & Emmons, K. M. (2007). How can we
increase translation of research into practice? Types of
evidence needed. Annual Review of Public Health, 28,
413433.
Glasgow, R. E., Lichtenstein, E., & Marcus, A. C. (2003).
Why dont we see more translation of health promotion research to practice? Rethinking the efcacy-toeffectiveness transition. American Journal of Public
Health, 93, 12611267.
Goin-Kochel, R. P., Mackintosh, V. H., & Myers, B. J.
(2009). Parental reports on the efcacy of treatments
and therapies for their children with autism spectrum
disorders. Research in Autism Spectrum Disorders, 3,
528537.
Goin-Kochel, R. P., Myers, B. J., & Mackintosh, V. H.
(2007). Parental reports on the use of treatments and
therapies for children with autism spectrum disorders. Research in Autism Spectrum Disorders, 1,
195209.
Grol, R. (2008). Knowledge transfer in mental health
care: How do we bring evidence into day-to-day practice? Canadian Journal of Psychiatry, 53, 275276.
Grol, R., & Grimshaw, J. (2003). From best evidence to
best practice: Effective implementation of change in
patients care. Lancet, 362, 12251230.
Guyatt, G. H., & Rennie, D. (2002). Users guides to the
medical literature: A manual for evidence-based clinical
practice. Chicago, IL: American Medical Association.
Horner, R. H., Carr, E. G., Halle, J., McGee, G., Odom, S.,
& Wolery, M. (2005). The use of single-subject
research to identify evidence-based practice in special
education. Exceptional Children, 71, 165179.
7
developmental disabilities. New York, NY:
Springer.
Singh, N. N., & Jackman, M. M. (2016). Teaching mindfulness to individuals with intellectual and developmental disabilities and their caregivers. In D. McCown,
D. K. Reibel, & M. S. Micozzi (Eds.), Resources for
teaching mindfulness: A cross-cultural and international handbook. NY: Springer.
Singh, N.N., Lancioni, G.E., Winton, A.S.W., & Singh, J.
(2011). Aggression, tantrums, and other externally
driven challenging behaviors. In J.L. Matson & P.
Sturmey (Eds.), International handbook of autism
and pervasive developmental disorders (pp. 413435).
New York: Springer.
Singh, N. N., & Oswald, D. P. (2004a). Evidence-based
practice. Part I: General methodology. Journal of
Child and Family Studies, 13, 129142.
Singh, N. N., & Oswald, D. P. (2004b). Evidence-based
practice. Part II: Specic methodology. Journal of
Child and Family Studies, 13, 255262.
Singh, N. N., & Oswald, D. P. (2004c). Evaluation issues
in evidence-based practice. In P. M. Barrett & T. H.
Ollendick (Eds.), Handbook of interventions that work
with children and adolescents: Prevention and treatment (pp. 7187). Chichester, UK: Wiley.
Thomas, W. H. (1996). Life worth living: How someone
you love can still enjoy life in a nursing home. Acton,
MA: VanderWyk & Burnham.
Part I
Foundations
Introduction
The nature and denition of intellectual decits
have been debated since the beginnings of the
classication of mental disorders. The terminology has changed at least ten times in the past century. Moreover, because people with intellectual
decits are often undervalued in society, scientic terms describing them have been used disparagingly. Consequently, classication systems
must contend with stigma and seek to introduce
non-pejorative terminology. Currently, the
emphasis in classication is placed either on the
underlying neurodevelopmental disorder (Author
APA, 2013) and resulting decits in adaptive reasoning and functioning in academic, social, or
practical settings or on disability, functional decits, and the identication of needed supports
(Schalock et al., 2010; Shalock, 2011).
Esquirol (1845) referred to intellectual decits overall as conditions of incomplete mental
development based on known (or unknown) bioJ.C. Harris (*)
The Johns Hopkins University School of Medicine,
Childrens Center, 1800 Orleans Street, Baltimore,
MD 21287, USA
e-mail: jharri10@jhmi.edu
S. Greenspan
University of Colorado, P. O. Box 620550,
Littleton, CO 80162, USA
e-mail: stephen.greenspan@gmail.com
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Historical Landmarks
The earliest reference to intellectual disability
(intellectual developmental disorder) may be
from ancient Egyptian medicine in the Papyrus
Ebers (1552 BCE) (Bryan, 1974). Yet despite
recognition since antiquity, there is little evidence
available to suggest early medical interest. Still
references in the various religious traditions suggest and indicate that people who were affected
were to be treated with kindness. Despite such
positive admonishment, infanticide was practiced
in Greek and Roman cultures, and trephining was
utilized in Europe and Central and South America
as an intervention, probably based on beliefs that
evil spirits might be released. People diagnosed
with ID (IDD) may have been slaves in some cultures or chosen for court jesters in others. Thus,
historically, attitudes ranged from humane concern to ostracism and abuse. In some countries,
those affected were viewed as harmless innocents
and allowed to wander at will. In England, Henry
II promulgated legislation to make them wards of
the king to provide for their protection (Harris,
2006).
At the end of the eighteenth century, with rising respect for the individual at the time of the
French and American Revolutions, the rights of
not only mentally ill, blind, and deaf people but
also those with an ID (IDD) were beginning to be
acknowledged (Kanner, 1964). Jean Marc
Gaspard Itard, ignoring the opinion of the experts
of his time, invested 5 years (18011806) seeking
to teach and habilitate Victor, the wild boy of
Aveyron (Lane, 1976), with support from the
French Academy of Sciences that followed his
interventions. Despite Victor making limited
progress, the methods Itard established were
acknowledged as highly meritorious by the
French Academy of Sciences. Gradually the
effort to educate people with an ID (IDD) spread,
rst to Switzerland and later in other parts of
Europe and the USA. Interest in ID (IDD) was
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18
late-life onset (e.g., Alzheimers disease) as disorders of brain functioning in DSM-5. DSM-5 eliminates the term mental retardation that was used in
DSM-IV-TR and eliminates the multiaxial classication that had placed mental retardation on
Axis II. The new term that replaces mental retardation in DSM-5 is intellectual disability (intellectual developmental disorder) and provides new
disorder diagnostic criteria thus aligning it with
all the other mental disorders in the classication.
As noted earlier, disorder is placed in parenthesis to make clear that the focus in DSM-5 is on a
disorder of neurodevelopment of the brain. It is
classied as a brain-based disorder. Additional
specier codes are used to indicate specic causative syndromes such as fragile X syndrome.
The term intellectual disability is retained in
DSM-5 because this term is commonly used to
obtain services and this term is used in federal
legislation (PL 111-256) for service determination. Both DSM-5 and AAIDD provide similar
denitions for intellectual disability in the body
of the denition. However, as noted earlier, the
AAIDD makes clear in their manual (2011) that,
like the WHOs International Classication of
Functioning (ICF), it is based on the disability
construct rather than the disorder construct.
The DSM-5, for the rst time, includes a denition of intelligence in Criterion A (Harris,
2013; 2014a). This inclusion is a major clarication meant to make clear how intellectual decits
are dened and their relationship to adaptive
functioning. These criteria are based on a consensus denition of intelligence accepted by the
APA and AAIDD (Gottfredson, 1997). Dening
intellectual decits is important to assure their
assessment in both clinical (psychiatric interview) and psychometric (IQ and neuropsychological testing) evaluations. This is a departure
from the DSM-IV-TR classication that does not
delineate intellectual decits in its denition.
Unlike the earlier DSM classications, DSM-5
does not refer specically to an IQ number in the
denition nor does it refer to IQ in Table 1 (severity levels on pp. 3436 in DSM-5). Instead it lists
intellectual decits in reasoning, problem solving, planning, abstract thinking, judgment, academic learning, and learning from experience.
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21
22
23
IDD Equivalence
The term IDD equivalence refers to accommodations that are made by legal and other governmental entities when they provide services,
supports, or protective arrangements to people
24
25
26
Problem of Diagnostic
Overshadowing
27
28
Social Incompetence
If you ask family members or experienced caregivers to list the top three concerns for an individual who has an ID (IDD) diagnosis, the list
would almost surely include the difculties that
he or she has in navigating the social world
(Turnbull & Turnbull, 1985). This lack of social
competence puts the person with ID (IDD) at risk
for a range of problematic outcomes, including:
social isolation or friendlessness, bullying or
social ostracism, and nancial or sexual exploitation. Similar concerns are also expressed by
knowledgeable service providers who echo
research ndings suggesting that failure in integrated work or residential settings is most likely
to stem from inability to read social cues or to
understand unstated behavior rules and expectations (Borthwick-Duffy, Greenspan, & Ho,
2006). In spite of the experience of family members and knowledgeable service providers about
the critical role that social incompetence plays in
the failure experiences of individuals with IDD,
the social domain is very sparingly addressed by
ID (IDD) researchers and clinicians, who tend to
see the disorder mainly in cognitive terms. In
fact, social incompetence can be, and largely is, a
cognitive problem, if one approaches it in terms
of social reasoning and judgment. However, the
general approach to social competence in the
main adaptive functioning instruments is inadequate. There is an overemphasis on maladaptive
behavior items into the social subscales of
adaptive behavior instruments.
Although people with IDD diagnoses are
universally socially incompetent, it is important
to understand exactly what that means. IDD
29
30
Neuroimaging
Structural and functional brain-imaging studies
have found differences in brain pathways that
contribute to intelligence differences (Deary,
Penke, & Johnson, 2010). The best evidence is
for parietofrontal pathways (Colom, Karama,
Jung, & Haier, 2010; Jung & Haier, 2007). Brain
efciency correlates positively with intelligence.
Brain-imaging research may examine intelligence as a unitary construct (Spearman) or as a
broader set of broader set of competencies
(Thomson). The analysis is complicated because
a given brain region may support multiple cognitive functions. Conversely, a given cognitive
function can be implemented with multiple brain
regions. This complicates the use of neuroscience
evaluation of local versus distributed representations to inform the nature of cognitive representations of intelligence.
Nevertheless, recent studies of an integrative
architecture for general intelligence and execu-
31
Neurodevelopmental Perspective
A developmental perspective focuses on how an
individual engages other people and masters environmental challenges. For people with a disorder
of intellectual development, there may be progressive thresholds for capacity in cognitive problem
solving. A developmental approach may be used
to unravel developmental dynamics by focusing
on the development of mental processing.
Demetriou, Christou, Spanoudis, and Platsidou
(2002) combined information processing models,
differential psychology, and neo-Piagetian developmental theory. They proposed a framework for
study by focusing on the emergence and maturation of working memory, executive functioning,
and cognitive efcacy in problem solving.
32
Co-occurring Neurodevelopmental
Disorders
Autism Spectrum Disorder
Autism spectrum disorder (ASD) has long been
viewed as highly associated with ID (IDD) and to
show a characteristic IQ subtest prole. It is
difcult to diagnose IDD in infants and young
children because of the lack of development of
language of representational (symbolic) capacities. However, diagnosis is appropriate when
social communication and interaction are
impaired relative to the developmental level of
the individuals nonverbal skills (ne motor, nonverbal problem solving). Because of the association with ID (IDD) in DSM-5, the specier with
or without accompanying intellectual impairment is required for ASD. Thus, it is not essential to diagnose both ID (IDD) and ASD. Severity
rating is complicated because severe social communication decits in ASD may result in placement in a severity level that is not commensurate
with cognitive functioning. Moreover, because of
discrepancies in verbal and performance scores,
the full-scale IQ is not reective of overall functioning in people with ASD.
The previous consensus suggested that up to
75 % of those with a diagnosis of ASD had a cooccurring IDD diagnosis with severe impairments in adaptive behavior. Typically, the
performance IQ (PIQ) was higher than verbal IQ
(VIQ). This PIQ/VIQ discrepancy (nonverbal
advantage) has been linked to increased head circumference and enlarged brain volume. On the
Wechsler test, a characteristic subtest prole was
noted with higher scores on block design and
lower ones on comprehension.
With increased recognition of the breadth of
autism spectrum, the prevalence of ID (IDD) is
less than before. In one comprehensive epidemiological study of 75 children with ASD based on
IQ test score, 55 % had IQ<70 and were diagnosed mild (Charman et al., 2011). Fewer than
1 in 5 were diagnosed as moderate to severe
IDD. Twenty-eight percent tested in the average
range (115>IQ>85). Three percent were of
above-average intelligence (IQ>115). The group
mean for PIQ was higher than the VIQ. The frequency of PIQ>VIQ was more common than
VIQ>PIQ, but higher PIQ was not associated
with greater social impairment. On WISC subtests, neither block design nor object assembly
was a signicant strength. The relationship with
ASD and intellectual decits is the subject of
genetic analysis. In one study, common polygenic risk for autism spectrum disorder (ASD)
was found to be associated with cognitive ability
in the general population (Clarke et al., 2015).
In summary, cognitive function must be
assessed in all children and adolescents diagnosed with ASD and is an important prognostic
feature. Thus, DSM-5 requires coding using the
specicer with or without intellectual decits.
Overall, adaptive functioning is lower than
expected for IQ in persons with an ASD diagnosis; this is most apparent in the higher-functioning people. A higher IQ score in ASD does not
necessarily predict functioning in the everyday
world because of the underlying social decit.
33
34
to people in only these named diagnostic categories. The intent of the IQ-equivalence functional
formulation appears to have been an attempt to
capture the adaptive limitation proles of individuals who functioned as if they had ID (IDD) in
spite of having IQs that fell above the 7075 IQ
ceiling. However, at least two of the skills (language and mobility) were not specic to ID (IDD)
(likewise, one also could argue that self-direction
was not specic to ID equivalence). The source of
this list is not clear. A limitation in this list is that
none of the items address decits in social functioning, which many people (and virtually all
family members) consider to be at the top of any
list of reasons why people with ID need protections and supports.
In 1990, Congress reauthorized the original
education legislation but changed the name to the
Individuals with Disabilities Education Act
(IDEA). The current IDEA Public Law is No.
94-142. It is composed of four parts and includes
six main elements. The six elements include individualized education program (IEP), free and
appropriate public education (FAPE), least
restrictive environment (LRE), appropriate evaluation, parent and teacher participation, and procedural safeguards.
35
Conclusion
This chapter reviewed the evolution of two
approaches to classication that seek to improve
the lives of people with decits in intellectual
functioning. Both emphasize a developmental
perspective. The rst of these focuses on the provision of services and may be traced back to the
Itards efforts to habilitate Victor of Aveyron by
testing a then current proposal that the mind at
birth is a blank slate and all knowledge is gained
through the senses. His partial success initiated a
special education movement that began in Europe
and spread to America that emphasized early
intervention and has been increasingly rened
over the years. Its focus is on normalization and
most recently self-determination. The American
Association on Intellectual and Developmental
Disabilities adopted this approach in its classication system. It emphasizes the standardized
measurement of intelligence but focuses on the
provision of supports to help each person reach
their potential. This approach is based on the disability model that emphasizes the importance of
facilitating the optimal functioning of each person to the extent possible. It is an approach that
advocates for the human rights of people with
disability in education, community settings, and
the law.
The other approach focuses on the etiology of
the intellectual decits and on their underlying
neurobiology and biomedical treatment. It recognizes that the mind is not a blank slate at birth and
that each individual has a distinct inherited neurobiology that interacts with environmental
forces in development. Intellectual decits are
largely the result of atypical brain development
whose causes must be ascertained. These decits
are assessed psychometrically by standardized
measures of both general intelligence and specic neuropsychological measures, especially
executive functioning. Both types of testing are
needed because, although we maintain the standardized measurement of general intelligence as
a diagnostic criterion in DSM-5, there are many
different patterns of intellectual impairment in
neurodevelopmental syndromes that impact
36
subtest score measurement and adaptive reasoning. The DSM-5 approach to diagnosis seeks to
classify neurodevelopmental disorders and
encourage nding their etiologies. Research in
the basic neurosciences, genetics, and neuroimaging is providing new insights into our understanding of the underlying neurobiologies.
This chapter emphasized that the full-scale IQ
is an inadequate basis for establishing an ID
(IDD) diagnosis, especially when taking into
account the new rst criteria in DSM-5 based on
the mainstream denition of intelligence. Both
individualized standardized and culturally appropriate IQ testing and focused neuropsychological
testing, especially for executive functioning, are
needed. Moreover, it is not uncommon for people
with brain dysfunction and/or neurodevelopmental disorders like FASD to have IQ scores over 75
but have severe decits in adaptive functioning
and reasoning in social judgment, social understanding, and other areas of adaptive functioning
so that the persons actual functioning in the real
world is comparable to that of individuals with a
lower IQ score. This has led to the establishment
of ID (IDD) equivalence pathways to developmental services for children and adults who are
viewed as deserving services but do not receive
them because their IQ score exceeds the standard
cutoffs.
In closing, achievement of functional competence in age-relevant roles is a developmental goal
for all human beings, including those who, because
of brain-based limitations, need special supports in
pursuing that achievement. The eld of ID (IDD)
thus contributes importantly to understanding
various forms of human competence, the role of
the brain in facilitating or impeding competence,
and the kinds of interventions that may contribute
positively to that process.
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Evidence-Based Practices
Karen C. Stoiber, Samuel Purdy,
and David A. Klingbeil
Introduction
Selecting and implementing interventions and
treatments may be the most critical activity of
practitioners committed to improving the outcomes and lives of individuals with intellectual
and developmental disabilities (IDD). To do this
well, practitioners will benet from knowing the
most effective interventions or evidence-based
programs and practices for individuals at-risk or
with intellectual disabilities. Further, such knowledge needs to be combined with effective implementation methods that are consistent with the
intent of these specic intervention practices.
Although intervention research began in early
1900s, interest in identifying and translating
research-based ndings into effective instructional and intervention practices has been incentivized with the evidence-based practice (EBPs)
movement in the USA, Canada, the UK,
Australia, and other countries (see APA, 2006;
Fixsen, Naoom, Blase, Friedman, & Wallace,
2005; Gibbs, 2002; Kratochwill & Stoiber, 2000,
2002; Odom, 2009; Odom et al., 2005; Stoiber &
41
42
3 Evidence-Based Practices
43
44
3 Evidence-Based Practices
45
46
It is useful, then, to examine intervention features of studies that are typically required or suggested for the designation of evidence-based
within the context of how the intervention is
likely to be applied with individuals with
IDD. Such a consideration seems especially
important because ID is a low-incidence disorder,
and the individual with IDD may experience
other comorbid disorders (e.g., seizure disorders,
emotional disturbance, sensory impairment). In
light of the diverse characteristics surrounding
individuals with IDD, the notion that one size
ts all in intervention effectiveness appears
questionable. Several indicators of evidence can
be drawn upon when evaluating and selecting
interventions, thus it is important to determine
those features of research that matter most.
Several conceptualizations for determining
what works to improve the outcomes for individuals or groups of individuals have emphasized
the importance of research study features that
incorporate a rigorous design and high internal
validity. For example, research designs that
incorporate an active treatment control group and
randomized controlled trials (RCT) are regarded
more highly than quasi-experimental, single-case
47
3 Evidence-Based Practices
Table 3.1 Summary of typical criteria and corresponding questions for determining evidence-based practices
Criteria for EBP
Research design
Quantity of research
Methodological quality
Magnitude of effect
Critical features
Research design is appropriate to
determining whether a practice
works, generally through strong
experimental control (e.g., control
group, randomly assigned
participants to groups, actively
introducing the intervention)
Single studies should be cautiously
interpreted regardless of the design,
methods, or effects. Converging
evidence from numerous studies is
required
High methodological rigor is needed
to have condence in the ndings of
a study (e.g., controlling for teacher
effect, reporting psychometric
properties of measurement tools)
Meaningful effects and positive
outcomes, as measured by effect
sizes, must be demonstrated
alongside statistical signicance.
Changes in outcomes must be
nontrivial
48
Fig. 3.1 Model of evidencebased practices in the context
of practice factors and systems
Community Context
School Context
Service Providers
Knowledge
Understandings
and Families
Teams
DecisionMaking
Skills
Evidence-Based
Practices
Administrators
School Resources
Community Resources
3 Evidence-Based Practices
Force
on
Evidence-Based
Interventions
(Kratochwill & Stoiber, 2002), and convey the
belief that good guidelines for selecting interventions should be exible and reect the realities of
practice.
These guidelines provide an organizational
framework for examining intervention research
qualities and for selecting those EBPs that would
best match a particular intervention goal and/or
setting. A specic intervention program or practice may be rated on a scale ranging from strong
to very low evidence, with more than one study
typically required to make a rating of strong support. Using such a rubric, research support for an
EBP could be rated as: (1) Strong supportat
least two high-quality studies with consistent
results or one multiple-site high-quality study;
(2) Moderate supportone high-quality study or
several studies with some limitations; (3) Low or
No supportseveral studies with severe limitations or no direct research evidence.
We recommend that scientically mindful
practitioners may benet in their decision making from considering the contribution of each category when selecting an intervention practice.
Each category is described briey below.
The rst consideration used in evaluating a
study relates to the empirical/theoretical basis,
general design qualities, and statistical treatment
of the intervention practice. This set of criteria
focus on features such as whether there exists a
strong theoretical or empirical basis for intervention, the overall quality of design methodology,
and the use of an appropriate outcome evaluation
(i.e., statistical procedures). These rst set of criteria are meant to provide a context for understanding what was done in the study and why.
The theoretical and/or empirical basis for a study
may indicate that cognitive-behavioral theory
provided the basis for the specic social competence skills that were emphasized in an intervention for a group of students with IDD who are
rejected by their typically developing peers.
Empirical support may specify that an intervention was selected because it had been shown to
effectively impact on a specic problem such as
engaging in sexually acting out or overly
affectionate behaviors.
49
50
3 Evidence-Based Practices
51
52
The rst example of an EBP is embedded constant time delay (embedded CTD). Embedded
CTD was developed as an instructional technique
for teaching academic content to students with
moderate to severe IDD as the strategy. The following is a brief outline of how this EBP may be
implemented and the application of the evidencebased criteria.
Embedded CTD is the practice in which the
educator or interventionist presents instructional
3 Evidence-Based Practices
53
54
Scientic Basics-General
Characteristics
RT is based on numerous sociocultural theories
in which the social context of an educational
experience impacts the amount of learning that
occurs in addition to cognitive and developmental theories of learning. RT, having been developed in the 1980s, has a large body of research
work supporting its use in the general education
setting; however it is more recently being used
with students with mild to moderate
IDD. Researchers chose to apply RT to this population in part due to early pilot studies that demonstrated students with mild to moderate IDD
beneted from engaging in meaningful discussions about text, rather than focusing reading
instruction solely on text decoding.
The Lundberg and Reichenberg (2013) study
included 40 participants who were randomly
assigned in subgroups with their regular teacher
to receive either RT or another intervention.
Statistically signicant pre- to post-intervention
differences were observed for most of the reading
outcomes measured, and reported effect sizes
indicated that when a signicant change in scores
was measured the gain was greater for the RT students than the alternative treatment group. As no
follow-up measures were reported by Lundberg
and Reinchenberg, it is unknown whether RT
produced sustained effects.
Reciprocal Teaching
The second example of an EBP is reciprocal
teaching (RT). RT is an instructional technique in
which teacher-led small groups engage in dialogue about a text (Lundberg & Reichenberg,
3 Evidence-Based Practices
55
Evidence-Based Assessment
Practices
The topic of evidence-based assessment is
covered next as a parallel and integral concept in
facilitating EBPs for IDD populations. Decisionmaking in assessment is often linked to the quality and focus of decision-making in intervention
selection and implementation. Thus, assessment
that incorporates evidence-based procedures and
practices is viewed as an essential component for
conceptualizing and facilitating EBPs in the eld
of intellectual and developmental disabilities.
Moreover, assessment plays a critical role in
determining who should receive an intervention,
how it should be implemented to maximize
intended effects, and what evidence should be
used to make adjustments to the intervention.
Assessment is rarely discussed as part of an
EBP framework (Hunsley & Mash, 2010), despite
its critical role in the provision of EBPs for individuals with IDD (Reschly, 2013). Evidencebased assessment (EBA), as dened by Hunsley
and Mash (2007, 2010), involves the use of
research and theory to select which constructs are
measured, and to identify which methods are
used for a specic assessment purpose. Within an
EBA paradigm, practitioners must consider the
cost of the assessment process, evaluate the
results of the assessment decisions, and monitor
the impact the assessment had on clinical outcomes for the person being assessed (Hunsley &
Mash, 2010). Therefore, contemporary perspectives on assessment require the use of measures
and practices with more traditional forms of psychometric evidence (e.g., test-retest reliability,
construct validity) as well as evidence documenting positive results for individuals (Messick,
1995). Such a perspective is reected in Kanes
(1992, 2006) argument-based validity framework. Kanes assessment model incorporates traditional forms of reliability and validity while
emphasizing the need for evidence supporting
the interpretation and resulting decisions made
with the data.
Current denitions of intellectual disabilities
include signicant impairments in cognitive
56
Screening
Screening tools are brief techniques designed to
identify those who likely have a condition from
those who most likely do not (Glascoe, 2005).
Screening may be conducted by pediatricians,
educators, or other qualied professionals. In clinical and educational settings, screening measures
may guide referrals or target early intervention
services (McKenzie & Megson, 2012; Sonnander,
2000). Resulting decisions are commonly to conduct more comprehensive evaluation, provide
early intervention, or provide no further services.
3 Evidence-Based Practices
57
58
Treatment Monitoring
Monitoring response to treatment is an important
assessment activity once a diagnosis or classication is made. The selection of progressmonitoring measures is dependent on the target
skills. Following the principles of evidence-based
assessment, measures should have theoretical
and empirical support linking the scores with the
intended constructs (Hunsley & Mash, 2010).
Measures used to monitor treatment effectiveness
should be brief, repeatable, and sensitive to
changes in client functioning over time. Resulting
data may be used to inform the continuation or
modication of the supports being provided. In
addition to the traditional forms of validity and
reliability, evidence should demonstrate the measures result in data that can inform accurate decisions
regarding
treatment
effectiveness.
Practitioners in educational settings often use
decision rules to interpret the resultant data from
treatment monitoring. Practitioners should use
decision rules that are based on empirical evidence, which may always be the caseeven for
rules that are widely disseminated (Ardoin,
Christ, Morena, Cormier, & Klingbeil, 2013).
School Settings
In educational settings, targets may include academic achievement, social competence, classroom behavior, or communication skills. Diverse
professionals with their respective specialized
training (e.g., school psychologists, speech/language pathologists [SLP], special education
teachers, occupational therapists [OT], transition
specialists) may work either collaboratively or
independently in identifying effective assessments that best target a clients needs and track
progress in their respective domain.
In many settings it may be common for the
SLP or special educator to assist in selecting
available oral language curriculum based measures (CBMs), such as the Test of Narrative
Retell (Petersen & Spencer, 2012) or the Narrative
Assessment Protocol (Pence, Justice, & Gosse,
2007). The school psychologist may choose
social competence oriented outcome measures
that focus on student self control and their self
Adult Clients
The quality-of-life (QoL) construct appears
germane to the discussion of monitoring the
effectiveness of supports provided to adults with
IDD (Brown, Hatton, & Emerson, 2013; van
Loon et al., 2013). A focus on ones QoL emphasizes the alignment of support services to the clients goals and desired outcomes (Luckasson &
Schalock, 2013) or family well-being (e.g., Hu,
Summers, Turnbull, & Zuna, 2011). Recent
research has focused on establishing QoL as a
framework for assessing client outcomes and
measuring the effectiveness of supports
(Schalock, Keith, Verdugo, & Gomez, 2011;
Verdugo, Schalock, Keith, & Stancliffe, 2005).
Schalock et al. (2011) cogently summarized
research validating the QoL framework. Briey,
researchers have developed and validated a
3 Evidence-Based Practices
Other Considerations
In this chapter, we address the history and rationale behind EBPs, their relevance concerning
individuals with IDD, and criteria for identifying
59
60
3 Evidence-Based Practices
Inclusive Education
Many students with SDD, or identied as IDD in
later grades may be provided services in selfcontained special education classrooms.
Inclusion of these students in general education
classrooms, however, is considered a best practice, if not an EBP on its own.
Inclusive education rst emerged as a prominent movement in US education research and
practice in the 1980s (Danforth & Naraian, 2015).
The justication for inclusion has largely been
theoretical and philosophical in nature, and the
inclusion of students in regular education classrooms is often done to reduce the marginality of
students identied as having disabilities (Dor,
Dion, Wagner, & Brunet, 2002). As such research
on inclusion is often in the position of trying to
validate policies already in place (see Danforth &
Naraian, 2015 for a conceptual article on the
approach such research should take).
Complicating the issue, school visits and observations have revealed that many schools who
report they are following an inclusion model for
special education have yet to move students with
disabilities into their general education classrooms. Thus, actual implementation this change
in service-delivery might require overcoming
signicant obstacles from school culture and disengaged leadership (Mamlin, 1999; Stoiber,
Gettinger, & Goetz, 1998).
Despite these complications, a large body of
research has supported inclusion as a special education approach, however the outcomes of inclusion for students with IDD has been far less
explored (Dessemontet, Bless, & Morin, 2012).
In Freeman and Alkin (2000) review of academic
61
Professional Development
in Evidence-Based Practices
To promote professionals and paraprofessionals
implementation of EBPs with individuals with
IDD, professional development (PD) activities
aimed at their knowledge and use of EBPs
appears as an important priority. The purpose of
the PD is to help those individuals who work with
IDD populations do the right thing by applying
EBPs in a manner that accommodates the needs
and abilities of individuals with IDD; but also to
get it right in terms of how the EBP is implemented and sustained effectively. For example, in
light of the example of promoting inclusion as an
EBP, PD would likely be benecial regarding
ways to alter environments (e.g., classrooms,
community settings) to accommodate students
with IDDs possible coexisting social and behavioral concerns. Although this PD focus should
assist professionals and paraprofessionals in their
work with individuals with IDD in the inclusive
62
across the institutional setting including collaborative conversations between researchers and
practitioners regarding the type of PD support
that is required prior to implementation of the
EBP, as well as what type and level of PD is necessary to ensure continuation of the EBP.
Conclusion
Evidence-based practices are receiving signicant attention in education and related elds.
Linked to the topic of EBPs is a robust line of
inquiry on implementation science which targets
efforts to diffuse, translate, and disseminate
evidence-based and evidence-informed practices.
Further, the press for widespread application of
EBPs in the school and community for individuals with disabilities conrm its status as a high
priority for improving outcomes with this population. Thus, EBPs should not be viewed simply
as a trend.
Despite the high level of interest in the implementation of EBPs in service delivery with individuals with disabilities, the research base on
EBPs with individuals with IDD is still evolving.
In addition, many critical research and application questions regarding optimal evidence-based
practices in serving individuals with IDD remain.
Some critical questions that readily emerge
include the following: What steps should be
taken in selecting EBPs for individuals with IDD
when there does not exist reliable sources to easily access them? How should unique differences
in individuals with IDD be accommodated when
adapting an EBP found to work with individuals
with other disabilities (e.g., SLD, speech and language delays) or without disabilities? What outcomes should be prioritized (e.g., social
competence development, a foundational skills
such as reading environmental sight words, or a
daily living functional skill) as most important to
address in selecting and implementing an EBP?
What is the optimal duration that an individual
with IDD should receive an EBP when data suggest that the individuals performance has not
changed?
3 Evidence-Based Practices
63
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Functional Assessment
Raymond G. Miltenberger, Sarah E. Bloom,
Sindy Sanchez, and Diego A. Valbuena
Introduction
Operant behavior is a product of its environment.
As a person engages in responses that result in reinforcing consequences, these responses are likely to
occur more whereas responses that do not result in
reinforcing consequences are likely to occur less.
Thus, behavior is learned. It acts on its environment to produce a consequence that strengthens the
behavior and increases the likelihood of future
occurrence. Appropriate behavior and problem
behavior are acquired and maintained in the same
manner. Furthermore, when responses are reinforced in the presence of specic stimuli, the
responses are more likely to occur in the presence
of these stimuli. These stimuli, called discriminative stimuli (SDs), have stimulus control over the
behavior. Finally antecedent events (motivating
operations or MOs) can alter the reinforcing value
of stimuli and thus inuence the behavior that produces those stimuli. Antecedent events that increase
the reinforcing value of stimuli are called establishing operations (EOs) and antecedent events that
69
70
Functional Assessment
Functional Treatments
With the development of functional assessment
methods to identify the environmental determinants of problem behaviors, functional treatments could be identied to address the specic
contingencies that maintain the behaviors. A
functional treatment is one that addresses the
antecedents that evoke the behavior and/or the
reinforcing consequences that maintain the
behavior. The three functional treatments for
problem behavior, developed on the basis of
functional assessment results, are extinction, differential reinforcement, and antecedent manipulations (e.g., Iwata et al., 1993; Miltenberger,
2016).
71
Differential Reinforcement
The second functional approach to treatment of
problem behavior is to deliver the functional reinforcer following an alternative behavior, or the
absence of the problem behavior, while withholding the reinforcer for the problem behavior. These
procedures are called differential reinforcement
of alternative behavior and differential reinforcement of other behavior, respectively. By reinforcing an appropriate response with the reinforcer
maintaining the problem behavior, but on a richer
schedule of reinforcement, the desired behavior
should increase and replace the problem behavior. For example, if the functional assessment
identies that a childs aggressive behavior is
maintained by social positive reinforcement in
the form of attention, differential reinforcement
may consist of providing more, higher quality
attention when the child asks for attention and
withholding attention when the child emits the
problem behavior.
Antecedent Manipulations
Extinction
Extinction consists of withholding the reinforcer
that previously maintained a response contingent
on the emission of the response (e.g., Iwata, Pace,
Cowdery, & Miltenberger, 1994). As the occurrence of problem behavior is no longer followed
by the reinforcer, the contingency between the
behavior and reinforcer is weakened and thus the
future probability of the response is decreased. In
other words, if the problem behavior is no longer
reinforced, it will stop occurring. For example, if
the functional assessment identies that a childs
aggressive behavior is maintained by social positive reinforcement in the form of attention,
extinction would consist of withholding attention
contingent on an aggressive response. Likewise if
aggressive behavior was maintained by termination of aversive tasks, extinction would consist of
72
Indirect Assessment
The rst step in the functional assessment process is the indirect assessment. During an indirect
assessment, the researcher or therapist meets
with caregivers and asks a series of questions to
gather information about the client, problem
behavior, and events related to the problem
behavior. The dening characteristic of indirect
assessments is that information is gathered from
the caregivers based on their recall of the behavior and related events.
Indirect assessment methods are widely used
in practice (Ellingson, Miltenberger, & Long,
73
Functional Assessment
Direct Assessment
Direct assessment (also called A-B-C recording,
Miltenberger, 2016) involves direct observation
of the target behavior in relevant contexts and
documentation of naturally occurring environmental events that precede and follow the problem behavior. Direct assessment can be
accomplished through narrative recording,
checklist recording, or interval recording
(Miltenberger, 2016). In narrative recording, the
observer writes a description of each instance of
the behavior and the events that precede and follow the behavior. In checklist recording, the
observer has a checklist of possible target behaviors, antecedents, and consequences. Each time
the behavior occurs, the observer checks the
behavior and antecedent and consequent events
associated with it. In interval recording, the
observer identies specic target behaviors and
antecedent and consequent events to be recorded.
During the observation period, the observer then
marks the occurrence of the behavior and each
event in consecutive intervals, resulting in data
74
Functional Assessment
75
76
Scatterplots
Scatterplots are a type of direct assessment used
when patterns of behavior in the natural
Summary
There is substantial research on the use and
effectiveness of direct assessment. The primary
characteristic of all types of direct assessment is
the emphasis on direct observation of the target
behavior and related events. Observations must
Functional Assessment
77
78
Functional Analysis
A nal approach to conducting a functional
assessment is the functional analysis (FA). The
term functional analysis refers to an assessment
strategy in which the behavior analyst experimentally manipulates antecedents and consequences to demonstrate a functional relationship
between these environmental events and behavior. Unlike indirect and direct assessment methods which can lead to a hypothesis about the
maintaining variables, the FA establishes a functional relationship, conrming the variables that
are maintaining behavior. Whereas indirect
assessments rely on self-report and direct assessments rely on observation of the natural occurrence of the target behavior and related events,
the FA manipulates antecedent events (SDs and
EOs) to evoke the behavior and delivers consequences differentially for these responses. If
responding is differentiated across conditions
with differing antecedent events and programmed
consequences (demonstrating experimental control), functional relationships between the behavior and environment are demonstrated.
A potential criticism of the FA approach is
that it purposefully evokes problem behavior. It
may seem that evoking and reinforcing the very
behavior that is targeted for decrease would be an
unsafe assessment method, particularly when
dealing with topographies such as self-injury.
However, the philosophy behind this approach is
that a temporary increase in the target behavior,
when necessary safety precautions are in place, is
tolerable and can conrm the hypothesized functions from indirect and/or direct assessment
methods, leading to potentially more effective
treatment. This approach can be analogous to
skin allergy testing, in which a number of allergens are placed on a persons skin in different
locations to see to which allergens produce a
reaction. The temporary hives and other potentially dangerous symptoms occur in the presence
of a physician who can respond appropriately.
The temporary discomfort and potential danger
of being exposed to an allergen is outweighed by
conrming the persons allergy in a safe environment and developing the most effective treatment. The same logic can be applied to the FA
approach, and in fact, in a review of 99 cases of
FAs on self-injurious behavior, Kahng et al.
(2015) concluded that rates of injury related to
the FA were low, and when injuries occurred they
were not severe. When the most appropriate FA
strategy is chosen and necessary precautions
(such as protective equipment) are employed, the
FA is a relatively safe, and very precise, assessment method that can identify functional relationships and lead to effective treatment.
Iwata, Dorsey, Slifer, Bauman, and Richman
(1982/1994) developed an experimental analysis
to assess the variables maintaining self-injurious
behavior. They exposed participants to a series of
conditions in a multielement design (as described
later). This study demonstrated an effective
approach to assess the function of the behavior
that was extremely inuential in advancing functional analysis methodology (Mace, 1994).
However, it is important to clarify that one of the
most critical contributions of this publication is
not the set of procedures described by the authors
(e.g., analogue setting, specic conditions, multielement design, data analysis method), but rather
the approach they employed; systematically
manipulating antecedents and consequences to
demonstrate functional relationships between
environmental events and the behavior of
interest.
Functional Assessment
79
Attention Condition
During the attention test condition, attention is
delivered following every instance of the problem behavior. To set up this test, the assessment
80
Tangible Condition
Although the tangible condition was not initially
described by Iwata et al. (1982/1994), access to
preferred items has been shown as a possible
function of problem behavior (e.g., Hagopian,
Wilson, & Wilder, 2001; Lalli & Kates, 1998).
Decision-making for whether to include a tangible condition should include careful consideration and selection of potential tangible items to
avoid false-positive results (Rooker, Iwata,
Harper, Fahmie, & Camp, 2011) To test for social
positive reinforcement in the form of access to
tangibles, preferred items are selected based on
the probability that their removal will result in
instances of problem behavior and their contingent delivery will reinforce the behavior. The
environment is then set up in such a way that
these tangibles are within sight but out of the
individuals reach. Prior to the start of this condition, the individual is given a few min to interact
with the item. The item is then removed by the
therapist, which creates a state of deprivation
(EO) that may evoke problem behavior if it has
been reinforced by access to tangibles in the past.
Contingent on instances of the problem behavior,
the therapist returns the item to the individual and
allows him/her to interact with it for 30 s while
other behaviors are ignored. This procedure is
repeated for the remainder for the session. Only
the tangible items used in the putative reinforcement contingency should be present to avoid
other freely available items interfering with the
EO for access to the programmed reinforcer.
In addition, to enhance the EO for the tangible
items they should not be freely available prior to
the session.
Escape Condition
The escape condition is designed to test the
effects of negative reinforcement on problem
behavior. During this condition, tasks are
Functional Assessment
81
Alone Condition
To test for automatic reinforcement during a
functional analysis, the individual is generally
left alone and observed surreptitiously. The
room is barren of any persons, toys, items, or
materials that may provide any outside source of
reinforcement for the problem behavior or competing behavior. If problem behavior is maintained by automatic reinforcement, high rates of
problem behavior can be expected in the alone
condition (Iwata et al., 1982/1994). In cases
when problem behavior is too severe, a therapist
may be present to block instances of problem
behavior, however, he/she does not provide any
consequences contingent on problem behavior.
This modication is referred to as the ignore
condition. This condition may also be used if it
is difcult to access a controlled environment in
which a client can be observed alone. Another
variation of the alone condition was described by
Piazza et al. (1998) who conducted functional
analyses of pica by baiting the test room with
items safe for consumption. By doing this, the
participants are still able to emit the problem
behavior in the absence of social consequences
but do so with materials that are not harmful to
their health.
Control Condition
Lastly, the control or play condition is
characterized by an enriched environment in
which there are no demands (including questions), the individual has continuous access to
preferred items, and non-contingent attention is
provided on average every 30 s. In this way, the
behavior analyst arranges an AO for attention,
tangible items, and escape as reinforcers for the
problem behavior. As a result, it is expected
that individuals engage in low or zero rates of
problem behavior (Iwata et al., 1982/1994).
82
Functional Assessment
Multielement
The multielement FA is perhaps the most widely
known, given the far reach of the publication by
Iwata et al. (1982/1994) and coverage in several
behavior analytic textbooks (e.g., Cooper et al.,
2007; Miltenberger, 2016). Although the methodology employed by the authors was an effective application of the experimental assessment,
it is important to note that their procedures were
only one variation of the FA approach and other
methods are also used.
The multielement FA consists of exposing
participants to a series of test conditions and a
control condition with different antecedent events
and programmed consequences (described in the
essential features above). The assessment is conducted in a controlled analogue setting where
participants are exposed to the conditions in brief
(e.g., 10- or 15-min) sessions that are alternated
rapidly. The rate of responding (or percentage of
intervals in which responses occurred) in each
session is then graphed in a multielement design,
and a differential rate of responding in one or
more conditions relative to the control condition
is interpreted as indicative of a particular function of behavior (see Fig. 4.1). The top panel in
Fig. 4.1 shows a multielement FA with hypothetical data in which the escape condition produced
higher rates of responding than the other conditions, demonstrating that escape is the reinforcer
for the problem behavior. The bottom panel
shows hypothetical data in which the target
behavior is high in all conditions, so a clear function is not identied. However, the high level of
the behavior in the extended alone condition suggests that the behavior is maintained by automatic reinforcement because it persists in the
absence of social reinforcement (see Extended
alone section).
Brief
One variation of the multielement FA is the brief
FA. A potential limitation in conducting a multielement FA is that the process can be time intensive. Consequently, researchers have developed
an approach that shortens the time necessary to
conduct the assessment. Northup et al. (1991)
83
84
15
Escape
10
Play
0
2
10
12
14
16
SESSIONS
60
Alone
Attention
40
20
0
5
10
15
20
25
30
SESSIONS
Fig. 4.1 Top panel shows a multielement functional analysis with attention, escape, alone, and play conditions. Bottom
panel shows the same conditions but includes an extended alone phase
function of behavior when time is limited. As suggested by Vollmer, Marcus, Ringdahl, and Roane
(1995), if the behavior analyst starts with a brief
FA and it results in a clear indication of the function of the behavior, then the behavior analyst can
use the information to develop functional intervention. However, if the brief FA does not produce clear results, the behavior analyst can
continue with more sessions and conduct a multielement FA as described above.
Single-Test
When a comprehensive interview and direct
assessment are conducted correctly, and there is a
clear hypothesized function (e.g., agreement
between multiple raters in an indirect assessment
and a direct assessment), it may be appropriate to
conduct a single-test FA (aka, hypothesis-testing
FA, Miltenberger, 2016) instead of a multielement FA with all conditions (aka, exploratory
FA, Iwata & Dozier, 2008; Miltenberger, 2016).
85
Functional Assessment
Alone
Attention
Play
Escape
PERCENTAGE OF INTERVALS
(TARGET BEHAVIOR)
40
Contingency
Contingency
Reversal Escape Reversal
30
20
Problem
Behavior
10
Alternate
Behavior
SESSIONS
Fig. 4.2 Shows a brief functional analysis with four conditions and a contingency reversal
25
20
Attention
15
10
Play
5
0
1
SESSIONS
Fig. 4.3 Shows a single-test functional analysis comparing the attention test condition and control (play) condition
86
Extended Alone
A variation of the single-test FA is the extended
alone condition. In this variation, a series of alone
(or ignore) sessions is conducted. The rationale
behind this method is that if behavior is maintained by automatic reinforcement, responding
will persist during the alone sessions. If behavior
is maintained by social reinforcement, extinction
will cause responding to decrease as the participant progresses through alone sessions. This
approach can be employed to conrm a clear
hypothesized function of automatic reinforcement, or when following a multielement FA,
results are undifferentiated with responding
occurring in all conditions (see bottom panel of
Fig. 4.1). Querim et al. (2013) evaluated this
approach and compared the results of the
extended alone FA to full session-based FAs. Out
of 30 cases, the prediction of function based on
extinction or maintenance during the extended
alone sessions had exact agreement with the
function (social versus automatic) identied by
the FA for 28 of the cases. It should be noted that
although an extended alone condition can rule
out automatic reinforcement and point to a social
Trial-Based
Although the multielement FA introduced by
Iwata and colleagues (1982/1994) was conducted
in an analogue setting rather than in the natural
setting, an analogue setting is not an essential
feature of the FA approach. As such, Sigafoos
and Saggers (1995) proposed the trial-based FA
(which they referred to as the discrete trial FA), a
variation of functional analysis methodology that
increased access to (and potentially the ecological validity of) the experimental approach by
embedding discrete trials into natural routines
rather than conducting sessions in an analogue
setting. The authors rst described the use of the
trial-based FA to assess the function of aggressive behavior in two children diagnosed with
autism in a school setting. Each trial lasted 2 min
and consisted of a 1-min test and control segment.
Test segments were terminated upon the
occurrence of problem behaviors. The results of a
trial-based FA are reported as the percentage of
trials in each condition in which the problem
behavior occurred (see Fig. 4.4). The results
obtained by Sigafoos and Saggers (1995) showed
a higher percentage of trials with problem behavior during the social positive reinforcement condition (in the form of attention for one participant
and tangibles for the other), suggesting that the
trial-based FA could potentially identify the environmental variables responsible for maintaining
% TRIALS WITH PROBLEM
BEHAVIOR
100
80
60
Test
40
Control
20
0
Ig
no
re
A
tte
nt
io
n
Ta
ng
ib
le
Es
ca
pe
CONDITIONS
Functional Assessment
problem behavior. However, given that a treatment analysis was not conducted following the
assessment it is unclear whether the functions
identied were indeed correct.
Bloom, Iwata, Fritz, Roscoe, and Carreau
(2011) expanded upon and further rened the
trial-based FA methodology. The modications
to the trial-based FA proposed by Bloom et al.
(2011) included a shift in the order of the test and
control segments and extension of trial segments
from 1 min to 2 min. Also, Bloom et al. proposed
a test for automatically maintained problem
behavior. Assessment trials were conducted by
therapists in elementary school classrooms during naturally occurring opportunities. For example, free play in the classroom set the stage for
tangible and attention trials and instructional
periods facilitated escape trials.
During the control segments for attention, a
moderately preferred item was available and the
therapist provided non-contingent attention to the
student. Instances of problem behavior did not
produce any consequences. Upon the termination
of the control segment, the test began with the
therapist telling that student that he/she had
some work to do and turning away. Contingent
on the rst instance of problem behavior, the
therapist expressed concern (delivering attention)
and terminated the test segment. The control segments for tangibles involved the therapist sitting
near the student who had access to a preferred
item. At this time, all instances of problem behaviors were ignored. Once the test segment began,
the therapist removed the tangible item and kept
it away from the participant for the remainder of
the 2 min. Contingent on problem behavior, the
therapist immediately returned the item to the
student and terminated the segment. During the
control segments for the demand condition, the
student was seated in the absence of tangible
items or task materials. As in the previous conditions, there were no programmed consequences
for instances of problem behaviors. Immediately
after the control segment, the test condition began
with the therapist placing a demand and guiding
the student to comply using least-to-most prompting (this can be modied if a different prompting
strategy is used in the setting). If the student
engaged in problem behavior, the therapist
87
88
Latency
Thomason-Sassi, Iwata, Neidert, and Roscoe
(2011) proposed the use of latency as the dependent measure for conducting FAs. Using latency
as the dependent measure could be advantageous
in cases where problem behavior occurs at low
rates, or when the behavior poses a risk to participants or others. It could also be useful when the
occurrence of the behavior modies the environment in a way that prevents recurrence of the
behavior (e.g., property destruction or removing
clothing), or when sessions must be terminated
upon the occurrence of the behavior for safety
reasons, as is the case with elopement. ThomasonSassi et al. (2011) compared the results of latency
FAs where the session was ended following the
rst response to multielement FAs using response
Precursor Analysis
Another application of the FA approach that is
useful when assessing the function of severe
behavior that can endanger the participants or the
investigators is the precursor FA. In situations in
which a single instance of the target behavior
would be dangerous or problematic, conducting
an FA on precursor behavior provides a safe and
effective approach.
Precursor behavior includes response topographies that reliably precede the target behavior
and are often part of the same functional response
class (Herscovitch, Roscoe, Libby, Bourret, &
Ahearn, 2009). Smith and Churchill (2002) rst
Functional Assessment
89
Biological Inuences
When conducting a functional assessment, if
there is any reason to believe that the target
behavior is inuenced by medical or biological
variables, behavior analysts should recommend a
medical consultation to identify or rule out the
inuence of such variables (BACB guideline 3.0)
90
Interpreting Results
One interprets the results of a functional analysis
by looking for separation in the data paths
between the test and control conditions. The rate
or percentage of intervals with problem behavior
is typically graphed on the y-axis and the number
of sessions on the x-axis. Functional analysis
results are commonly graphed in multielement or
reversal design and interpreted through a visual
analysis (Beavers et al., 2013). Perhaps the most
important criterion for accurately interpreting the
results of functional analyses is ensuring that
each test condition is independently compared to
the control condition. An elevated rate of behavior
in a single test condition compared to the control
condition is said to display differentiated responding (aka, separation in the data). For example,
high rates of behavior in the attention versus the
Functional Assessment
Within-Session Analysis
Another strategy for interpreting functional analysis results is to analyze within-session patterns
of responding. This approach might be useful if
there is no separation in the data between test and
control conditions during the initial functional
91
92
Attention
Alone
Play
Escape
10
10
15
20
25
30
35
40
MINUTES
Fig. 4.5 Shows a within-session functional analysis with four conditions
Conclusion
We begin this chapter by making the case for the
importance of conducting a functional assessment to identify environmental determinants of
Functional Assessment
93
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(2008). Further evaluation of leisure items in the attention condition of functional analyses. Journal of
Applied Behavior Analysis, 41, 351364.
Functional Assessment
97
aberrant behavior. Journal of Applied Behavior
Analysis, 28, 561576.
Zarcone, J. R., Rodgers, T. A., Iwata, B. A., Rourke, D., &
Dorsey, M. F. (1991). Reliability analysis of the motivation assessment scale: A failure to replicate. Research in
Developmental Disabilities, 12, 349360.
Preference Assessments
for Clinical Decision Making
Andrew L. Samaha, Sarah E. Bloom,
and Leah J. Koehler
Introduction
The Oxford English Dictionary offers us two
denitions of preference that are relevant to this
chapter:
1. The action of or an act of preferring or being
preferred; a greater liking for one alternative
over another or others; predilection and
2. The object of prior choice; that which one
prefers.
Schwartz and Baer (1991) suggested that
choice was the fundamental behavioral denition
of preference. While perhaps lacking in the richness of qualitative description, such a conceptualization affords clinical and experimental utility
through precise quantication, comparison, and
scaling. In this chapter, we review procedures
that have been used to assess preference. Most of
the included literature involves individuals with
intellectual and developmental disabilities
(IDD), though the procedures may be reasonable
whether the subject of study has some language
deficit, if we are perhaps dubious of their
A.L. Samaha (*) S.E. Bloom
Department of Child and Family Studies, University
of South Florida, 13301 Bruce B. Downs Blvd,
Tampa, FL 33612, USA
e-mail: andrewsamaha@usf.edu
L.J. Koehler
Department of Psychology, University of Florida,
Gainesville, FL 32611, USA
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interaction can be compared, producing hierarchies of preference (e.g., Kelly et al., 2014). A
limitation of this approach is that it only includes
stimuli currently present in the environment. If
the environment includes minimal stimuli, the
range of stimuli assessed will also be limited. It is
also possible that a single item may be very preferred, and may consume large quantities of time,
either resulting in little information being gathered about the other stimuli present, or extended
observations.
Another strategy involves systematic presentation of a variety of stimuli and recording some
measure of selection or item interaction. Typically
when items are selected, an interaction period is
permitted before the next stimulus or set of stimuli is presented. This way, selecting an item
results in an opportunity to interact with that item
and it is presumed that only items with which the
subject wishes to interact will be selected. This
approach can be an efcient means to get information about preference for a wide variety of
stimuli. The approaches described below have
different strengths and weaknesses and are appropriate for different situations.
Single-Stimulus Approach
The single-stimulus approach involves presentation of a series of stimuli, one at a time while a
therapist measures the subjects approach or lack
thereof (Pace et al., 1985). Once an item is
approached, the subject is permitted to interact
with it for a period of time (e.g., 5 s). Pace et al.
repeated the process ten times for each of 16
stimuli, drawn from a number of stimulus classes
(auditory, edible, kinesthetic, olfactory, social,
tactile, thermal, and visual). Data on the percentage of trials each stimulus was approached were
presented as an index of preference. When Pace
et al. measured the effectiveness of high-preferred stimuli versus low-preferred stimuli when
delivered as a consequence for a response, they
found a correlation between preference and reinforcer effectiveness. The single-stimulus
approach provides information about whether or
not the subject prefers a stimulus over nothing.
105
another,
the
single-stimulus
preference
assessment may not yield the desired information, despite the hierarchies obtained by Pace
et al. (1985), which relied on variation of
approach versus non approach across trials for
each stimulus. If such variation does not exist,
approach percentages may cluster around 100
and 0 % (Mazaleski, Iwata, Vollmer, Zarcone, &
Smith, 1993). Opportunities for selection in the
single-stimulus approach are between a single
item and nothing and, as such, are not ideally
suited to determine preference differences across
stimuli. In order to obtain a preference hierarchy,
it is useful to include opportunities to select
between concurrently available stimuli. Finally,
because better than nothing is such a low bar,
items identied as preferred by single-stimulus
approaches may not necessarily function as reinforcers (Paclawskyj & Vollmer, 1995).
Paired-Stimulus Approach
One approach of differentiating between stimuli
that is more sensitive than Pace et al.s (1985)
single-stimulus approach is to present stimuli in
pairs until every stimulus has been presented
with every other stimulus. The procedures for
doing so are very similar to those described above
except that two items are presented concurrently
(and every stimulus is presented along with every
other stimulus at least once, and always an equal
number of times), instead of one at a time, and a
subject is prompted to select between the two.
Attempting to select both simultaneously is
blocked, but all other procedural details described
above are also relevant to this approach.
Fisher et al. (1992) compared this approach
(which they referred to as a forced-choice
procedure) to the single-stimulus approach using
16 stimuli across the same eight classes as those
investigated by Pace et al. (1985). Replicating the
results of Pace et al., Fisher et al. found that the
single-stimulus approach failed to differentiate
between at least two stimuli in each of the eight
participants. More importantly, Fisher et al.
found that the paired-stimulus (PS) procedure
allowed for differentiation between those highly
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Multiple-Stimulus Approaches
Despite the existence of position-biased responding in some individuals, the PSPA is a commonly
used and well-established approach to identifying preferred items as well as relative preference
for those items. Although reliable and a marked
improvement over lengthy observations in the
environment, PSPAs can be cumbersome,
depending on the number and nature of the stimuli assessed and the duration of access time
between stimulus presentations. The multiple
stimulus preference assessment is an adaptation
that takes less time, but still results in a hierarchy
of preferences.
The multiple stimulus with replacement
(MSW) preference assessment was developed by
Windsor, Piche, and Locke (1994). They presented six items in an array and allowed subjects
(adults with disabilities) to select from that array.
The stimuli used were edibles (food and drink)
and item position was rotated across trials.
Following each selection from the array, the therapist replaced the consumed item. The process
was repeated ten times. They compared that
approach to a PS approach in which each item
was presented with only one other item across 30
trials (10 opportunities to select each item).
Highly preferred items were correlated across
both assessments, but more consistent preference
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Therefore, it appears that the MSWO is a procedure that combines the advantages of a PSPA (a
reliable hierarchy) and the MSW (efciency).
DeLeon and Iwata (1996) repeated the MSWO
preference assessment ve times. Higbee, Carr,
and Harrison (2000) replicated the procedure, but
repeated the assessment three times instead of
ve. When the stimuli identied as most highly
preferred were used as consequences in a subsequent reinforcer assessment, they increased
behavior to above baseline levels. However, there
was some inconsistency between MSWO rankings and relative effectiveness of each stimulus
during the reinforcer assessment, suggesting that
there may be an improvement in reliability of the
results when ve versus three repetitions are conducted. In order to test this possibility, a study
could be conducted in which an MSWO is
repeated ve times and then the stimuli selected
as high, moderate, and low preference from each
could be compared during a reinforcer assessment. It should be noted that any of the other previously described assessments could be repeated,
either to determine the degree to which preference remains consistent or two improve the likelihood that momentary variability will not
adversely effect outcomes.
An important variation on multiple-stimulus
approaches is the free-operant preference assessment. Roane et al. (1998) presented 1011 items
in a circle in front of participants and observed
their interaction for 5 min. Participants were free
to manipulate the items, or no items, and at no
point during the session were items withdrawn.
Observers recorded the percentage of 10-s intervals each item was touched or held by the participant. The authors found that stimuli interacted
with more often functioned as more effective
reinforcers. In comparison to results from PSPAs,
the free-operant approach sometimes identied
different items, but it was associated with shorter
assessment times and fewer instances of problem
behavior (which tended to occur during the PSPA
when items were removed between trials).
Regardless of the number of times the assessment is conducted, and whether or not selected
stimuli are replaced before subsequent trials,
multiple stimulus preference assessments share a
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110
below that assess preference for activities or interventions. For example, responses in the initial link
described by Hanley, Piazza, Fisher, Contrucci,
and Maglieri (1997) produced access to a room
where a particular intervention, with its own
response requirements and associated schedules
of reinforcement, were in effect.
It is useful to conceptualize some forms of
preference assessment as concurrent-chains
schedules because doing so allows us to anticipate a wide-range of effects observed in basic
laboratories ranging from those due to delays to
reinforcement, magnitude (or the duration),
response requirement, schedule, and effort. From
this framework, we can be more condent that
the preferences we measure are valid when selections among activities result in access to those
activities immediately and always. Some examples of the applied work on assessing preferences
using concurrent-chains schedules are described
below and underscores some of these points.
Mithaug and Hanawalt (1978) described the
rst systematic use of a concurrent-chains schedule to evaluate preference for activities, or in
their case, vocational tasks. Preferences for
vocational tasks (sorting, assembling paper
booklets and other items, and stufng envelopes)
were assessed in three adults with intellectual
and developmental disabilities. Representative
items from the tasks were presented to subjects
in pairs and approaches produced access to the
selected task for 7 min. Items were presented in
random pairs, with the exception that the previously selected item was presented with a new
item until it had been paired with everything else
at least once.
As stated earlier, a concern raised when
assessing preference for activities is that their
remoteness comes with a reduced ability to affect
choice. One way to enhance control by the activity is to provide it following selections. But providing the activity immediately following
selection does not necessarily guarantee that
preference is not due to some idiosyncratic feature of the stimuli presented to clients during
choice-making. Thus, although Mithaug and
Hanawalt (1978) identied clear preferences, it is
still difcult to know whether those preferences
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Reinforcer Assessments
Many people probably misuse the term reinforcer
to mean, a stimulus that I hope will make my
intervention effective, a stimulus that I hope
will increase behavior, or a preferred stimulus
that I hope will increase behavior. Indeed, when
caregivers are questioned about whether they
have ever tried reinforcement, they may respond
in the afrmative, but further questioning may
reveal that they only tried one stimulus without
having either direct or indirect evidence that it
actually functioned as a reinforcer under any circumstances. Reinforcement-based interventions
can fail for a variety of reasons, not least of which
has to do with the effectiveness of the chosen
reinforcer. Preference assessments provide
some clues as to whether stimuli are likely to
function as reinforcers, but often the evidence
they provide is indirect.
Therefore, when things are not working, it
may be prudent to conduct a reinforcer assessment to provide clear evidence that at least the
stimuli included in the intervention function as a
reinforcer. This allows the clinician to focus on
adjusting other parameters of the intervention. In
addition, reinforcer assessments might be used to
provide direct evidence that one stimulus in particular is the most effective reinforcer out of those
being considered. Many of the studies described
so far included some form of reinforcer assessment. Below we describe three types of reinforcer
assessments along with their merits.
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Single-Operant Reinforcer
Assessments
Following a preference assessment, Pace et al.
(1985) conducted a single-operant reinforcer
assessment to conrm whether preferred stimuli
(dened as those stimuli that were approached on
at least 80 % of trials) provided contingently
resulted in more correct responding than nonpreferred stimuli (dened as those stimuli
approached on 50 % or fewer trials). At the beginning of each trial, participants were provided with
one of ve instructions: reaching across the table,
making eye-contact with the therapist, raising a
hand, touching the therapists hand, and saying
eat. During a no-reinforcement baseline, compliance with the instruction produced no programmed consequences (i.e., the therapist
behaved as if nothing happened). During the test
conditions, compliance within 5 s of the instruction resulted in 5 s of access to the stimulus being
tested. A session consisted of ten trials.
Reinforcement effects were demonstrated
using a reversal design. Although the specic
order of conditions varied across participants,
most participants experienced a baseline, a preferred stimulus test, a non-preferred stimulus test,
a return to baseline, and a return to the preferred
stimulus test. The results showed that preferred
stimuli were associated with a higher percentage
of correct responses as compared to baseline, suggesting the preferred stimuli functioned as reinforcers. In some cases, the percentage of correct
responses obtained when using non-preferred
stimuli was greater than that observed during
baseline, suggesting that at least some of the nonpreferred stimuli also served as reinforcers. In
those cases, preferred stimuli were associated
with greater levels of correct responding than
non-preferred stimuli, suggesting that preferred
stimuli functioned as more effective reinforcers
when compared to non-preferred stimuli.
Typically, clinicians would begin a singleoperant reinforcer assessment by selecting some
topography of behavior to reinforce. Because the
purpose of the assessment is to learn something
about the strength of the stimulus, it is usually
desirable to select a response that is already in the
of other behavior (DRO, or providing the stimulus continent on periods of time in which the
behavior does not occur). Thompson, Iwata,
Hanley, Dozier, and Samaha (2003) evaluated
these control conditions and found that no reinforcement was generally associated with the most
rapid demonstration of reinforcement effects
with few negative side effects.
The single-operant approach can be a rapid
means of testing whether a stimulus functions as
a reinforcer, but subsequent work has shown that
it may not be ideal for selecting between reinforcers of varying effectiveness or value. For
example, Roscoe, Iwata, and Kahng (1999) compared rates of responding when low- and highpreferred stimuli were provided contingent on
behavior in both a single-operant and concurrentoperant arrangement. They found that often
responding tended to be about the same in the
single-operant arrangement regardless of the
stimuli being provided. It might be that when
given the opportunity to earn a reinforcer or not,
subjects are likely to work regardless of whether
the reinforcer is amazing or ne. This problem with using single-operant reinforcer assessments is reliable and has been replicated many
times (Catania, 1963; Lerman, Kelley, Vorndran,
Kuhn, & LaRue, 2002; Taravella, Lerman,
Contrucci, & Roane, 2000). Under such conditions, a concurrent-operant reinforcer assessment
may be more revealing of relative value.
Concurrent-Operant Reinforcer
Assessments
Concurrent-operant reinforcer assessments differ
from single-operant assessments in that at least
two response options are available, and (usually)
each response option produces a different consequence. The relative value of one stimulus is
inferred from the degree to which clients choose
to engage in the response that produces it over
others. In this way, concurrent-operant reinforcer
arrangements are similar in form to paired-stimulus preference assessments. The difference lies in
the amount of work required to obtain a stimulus.
Response requirements are usually very low
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Conclusion
There are a variety of reasons for conducting
stimulus evaluation procedures like those discussed previously, of which only one is the identication of effective reinforcers. Stimulus
evaluation procedures like preference and reinforcer assessments continue to play critical roles
in service delivery and research. Obtaining meaningful data necessitates careful selection of stimuli to be assessed, weighing the time and resources
required by the assessment procedure with the
value of the data to be obtained, and careful
implementation. A multitude of procedures have
120
been developed to measure preference and renement continues in the eld to better identify
preferred stimuli, relative preference, and effective reinforcers. This evolution of systematic
methods increases the availability of clinical tools
that assess client preference and choice, and to
incorporate them into treatment development.
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Introduction
Despite the many reports of successful treatment
of severe problem behaviors in individuals with
intellectual and developmental disabilities (e.g.,
Kahng, Iwata, & Lewin, 2002), children and
adults with problem behaviors not classied as
severe remain untreated or unsuccessfully treated
in institutions, group homes, schools, and family
homes around the country. Severe problem
behaviors include self-injurious behavior, aggression toward others, and other types of destructive
behavior that is forceful and/or dangerous, or
health or life-threatening, that has resulted in or
has a high probability of hospitalization, social
isolation, and/or serious injury, immediate death
or delayed death. Not all self-injurious behavior
is severe, but a brief review of any research journal on developmental disability suggests that vir-
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Preferred Stimuli
Function-Based Treatment
Besides enrichment of the physical and social
areas of an environment, methods and procedures
that address the individuals environment to
decrease or prevent the occurrence of problem
behavior using preference assessments have been
reported in the literature. For example, FosterJohnson, Ferro, and Dunlap (1994) found that
implementing preferred activities reduced the
levels of inappropriate behaviors (e.g., disruptive, stereotypy) and increased the levels of
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128
Functional Assessment
The functional analysis methodology has been
utilized to identify functions of problem behaviors at an early stage and develop treatment
plans for young children (Kurtz et al., 2003;
Reeve & Carr, 2000; Wacker et al., 1998). For
129
Ecological Assessment
The functional analysis protocol (Iwata et al.,
1994) has been widely used to identify functions
of problem behavior (Beavers et al., 2013; Hanley
et al., 2003). At times, target behaviors are maintained by variables not tested in the standard protocol. For example, several idiosyncratic factors
have been identied in the research literature
(Hagopian, Rooker, Jessel, & DeLeon, 2013;
Hanley et al., 2003; Schlichenmeyer, Roscoe,
Rooker, Wheeler, & Dube, 2013).
Ecological validity may be a concern, in that
behavior problems can serve different functions
depending on the context (Lang et al., 2009).
Context of the functional analysis may impact the
rate of the target behavior observed. In situ
hypothesis testing, which may be conducted in
the natural environment (Cipani & Schock,
2011), involves switching between baseline and a
functional treatment, and comparing the rate of
target behavior between conditions. When target
behaviors occur at a low frequency, a trigger
analysis can be used (Cipani & Schock, 2011).
With a trigger analysis, the suspected antecedent
condition (i.e., discriminative stimulus and motivating operation) is presented and the percent
occurrence of the target behavior is recorded. A
trial-based functional analysis can also be conducted effectively in the natural environment
(Bloom, Iwata, Fritz, Roscoe, & Carreau, 2011;
La Rue et al., 2010). Telemedicine techniques
can also be used to conduct a functional analysis
in the desired environment (Barretto, Wacker,
Harding, Lee, & Berg, 2006).
Given that the functional analysis involves
presenting stimuli that evoke target behaviors,
some problems may be too severe for such an
approach to be ethical. Functional analyses have
been conducted on precursor behaviors to develop
effective treatment (Fritz, Iwata, Hammond, &
Bloom, 2013). Dracobly and Smith (2012)
employed descriptive assessment and conditional
probability analyses to identify precursors to
severe infrequent self-injury. Lerman and Iwata
(1993) formulated conditional probability equations to analyze descriptive data. Pence, Roscoe,
130
Environmental Enrichment
Environmental enrichment is designed to maximize reinforcement rates in the environment,
including the provision of preferred or developmentally appropriate toys, objects, and activities,
making them easily accessible to children. These
items or activities can contain multi-sensory
stimulation that facilitates interactions between
children and their environment. In other words,
environmental enrichment serves as a motivating
operation that increases the opportunities for
children to engage in appropriate activities.
Preference assessments can be conducted to
determine the preferred stimuli for each individual when arranging environmental enrichment.
The implementation of non-contingent reinforcement or environmental enrichment can also be
conceptualized as providing competing stimuli to
problem behaviors as a means to gain access to
preferred items or activities. When such a need is
met, many children choose to engage in appropriate activities, rather than exhibiting problem
behaviors. However, a study by Boe (1977) demonstrated that merely providing toys for aggressive children is not a panacea. In this study, Boe
found that more oor space plus non-contingent
reinforcement produced the best outcomes.
Other treatment strategies involving motivating operations include offering activity choice
opportunities for children and designing skill
acquisition programs suitable to each childs current levels. These strategies can be utilized to
minimize the potential aversive effects associated
with task demands that might trigger the occurrences of problem behaviors. Differential reinforcement procedures are commonly used in skill
acquisition as well as behavior reduction.
Reinforcement is delivered contingent on the
emission of the target responses. Functional communication training is often taught as an
alternative to problem behaviors for obtaining
desired consequences.
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132
Conclusion
We present a selective number of studies that
suggest that severe problem behaviors in people
with intellectual disabilities can be prevented.
Specic behavioral practices that we believe have
contributed to an improved methodology for prevention include the following: (a) experimental
functional analysis is increasingly used; (b) preference assessments provide vehicles for choicemaking on a wide scale; (c) function-based
treatment continues to be increasingly successful; (d) improved identication of young children
at risk for severe problem behaviors are being
133
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Introduction
The purpose of this chapter is to summarize current research ndings and describe best professional practices in relation to assessing the
support needs of people with intellectual and
developmental disabilities (IDD) in community
settings. The chapter begins with a discussion of
how changes in public policy, trends in service
delivery systems over the past four decades, and
new understandings of disability have contributed to a growing interest in support needs assessment, planning, and arranging individualized
supports with people with IDD in community
settings. Next, the logic underlying personcentered planning (PCP) processes is explained
and several leading PCP processes are described.
Also, research ndings related to the efcacy of
PCP are summarized. The nal section focuses
on support needs assessment tools that have been
developed on which research ndings have been
reported in peer-reviewed, professional literature. A synthesis of ndings related to the psychometric properties and factor structure of these
tools are presented.
137
138
moving from an institution to a community residence, including people who were initially reluctant to leave their institution. Factors that have
been examined include degree of choice making,
extent of community integration, employment
outcomes, extent of family contact, level of personal and family satisfaction, involvement in
social relationships, extent of problem behavior,
and growth in adaptive behavior skills. Reviews
of professional literature of deinstitutionalized
populations published during the 1980s, 1990s,
and 2000s have revealed a preponderance of evidence indicating a very high likelihood that people who leave institutions and move to community
homes will experience considerable benets
across a wide array of indicators (Kim, Larson, &
Lakin, 2001; Lemay, 2009).
The institutional option becomes even harder
to defend when considering their nancial costs.
Stancliffe, Lakin, Shea, Prouty, and Coucouvanis
(2005) examined a series of studies that revealed
the cost of community services were from 5 to
27 % less than services offered at state operated
institutions. Assuming that there will always be a
nite amount of funding available to support people with IDD, continuing to spend extra money
on people living in more expensive institutional
settings has a net effect of restricting the amount
of money available to fund services in local
communities.
Although there still are public and privately
operated institutions in the USA and elsewhere, the
overwhelming majority of people with IDD live
their lives in local communities (Braddock et al.,
2013). The eld of IDD has clearly moved beyond
the question of should people be supported in
their local communities? to what is the best way
to support people in local communities?
139
140
Instruction as a Support
Notice that developing and delivering instruction
on how to use the ATM was identied as support
in the previous paragraph. The reader might ask
Isnt providing instruction to teach a new skill
(and eliminate a skill decit) consistent with the
medical model? The answer is yesinstruction to eliminate a decit is consistent with medical model thinking. In the example above,
however, the instructional support was not initiated to eliminate a decit. Rather, its purpose was
to address the personenvironment mismatch.
This distinction may seem supercial at rst
glance, but it is important in the context of determining how professionals should approach planning and service delivery with individuals and
their families. Instructional goals that emerge
from a social-ecological understanding of a person require a thoughtful analysis of a persons (a)
desired activities and settings and (b) the compe-
141
142
Person-Centered Planning
Processes
Origins and Controversies
Some professional practices in the eld of IDD
result from systematic peer-reviewed research
that has been disseminated through professional
literature. It is not uncommon, however, for professional practices to emerge from the experiences of people working in the eld. The
disadvantage of such bottom up approaches is
143
144
MAPS
MAPS was originally developed at McGill
University in Montreal. At rst it was an acronym for the McGill Action Planning Strategy,
but currently people just refer to it as MAPS. The
process is driven by eight questions and information is recorded on ip charts over the course of
several meetings. In comparison to other PCP
processes, Wells and Sheehey (2012) and
Westling and Fox (2009) reported that MAPS is
especially useful when planning with children.
Although everyone on the planning team can
contribute to each question, some questions are
more directed to specic planning team members. Each question, as well as essential information about the question, is provided below:
PATH
Planning Alternative Tomorrows with Hope
(PATH) was developed in the 1990s by some of
the same people who developed MAPS. The multistep process is unique among PCP approaches
because it requires a team to work backwards
from the desired end point (known as the North
Star). The North Star is the long-term vision for
the person. During this initial step of the process
the person with IDD is encouraged to express
their values, passions, hopes and dreams for the
145
146
147
148
metric. There was also intent to replace traditional classication categories with descriptions
of needed support. Terms such as mildly, moderately, severely, or profoundly retarded will no
longer be used. Thus, a diagnosis might well be
a person with mental retardation who needs
limited supports in communication and social
skills (p. 34).
Not only was there considerable controversy
about the eliminating traditional, decit-based
classication categories based on IQ scores [i.e.,
mild (5570), moderate (4054), severe (2539),
and profound (24 or lower)], but many were concerned with the subjectivity of the process for
coming with up with either descriptions of support needed or support-based classication categories. The 4-points on the ILEP scale were not
operationally dened, and distinctions were
unclear between the ten adaptive behavior skill
areas (as well as the other areas) on which the
ratings were to be applied. More to the point,
there were no data to indicate that this process to
evaluate support needs was defensible from a scientic perspective (Jacobson & Mullick, 1992;
MacMillan, Gresham, & Siperstein, 1993, 1995).
In response to the unsuccessful launching of
the ILEP support needs assessment and classication approach, the AAIDD convened a Support
Needs Assessment Task Force. The task force
was charged with developing a uniform procedure to assess the pattern and intensity of needed
extraordinary supports of people with IDD that
yielded psychometrically defensible results
(Wehmeyer et al., 2009). The work of this task
force resulted in the creation and publication of
the Supports Intensity Scale (SIS) in 2004
(Thompson et al., 2004a). The original SIS is
now known as the SIS-A (Supports Intensity
ScaleAdult Version) since a childrens version
(i.e., the SIS-C; Thompson et al.; in press) has
been recently introduced. Additionally, researchers outside of the AAIDD, both within and outside of the USA, began working on creating new
support needs assessment scales. In the next section we describe and summarize research ndings on eight different scales on which
psychometric properties have been reported in
peer-reviewed professional journals.
149
150
Reliability
Reliability refers to the consistency of an assessment. There are multiple indices available to
researchers to investigate a scales reliability. The
nature of the scale (e.g., what it purports to measure, types of the items) and data characteristics
(e.g., sample size) must be taken into consideration
when deciding which indices to use (Salvia &
Ysseldyke, 2007). Like other psychological constructs, a persons support needs are assumed to be
relatively stable over time and its measurement
should not be inuenced by extraneous factors
such as who is administering the assessment.
Therefore, a support needs scale that accurately
measures the construct must yield consistent (i.e.,
reliable) results. However, although reliability is a
necessary condition for judging the validity of a
scale, it is also insufcient (Salvia & Ysseldyke,
2007). In other words, just because a scale provides
a reliable measure of support needs does not mean
it provides a valid measure of support needs.
To assess scale reliability, researchers have
investigated the extent to which the same results
occur when different assessors are involved in
administering the scale (interrater reliability) and
when scales are administered at different times
(testretest reliability). Also, ndings pertaining
to the internal consistency of items on a scale
(i.e., if items are truly measuring the same construct they should highly correlate with one
another) as well as the split-half reliability (if a
scale is divided into two parts, the two sections
should have a strong correlation) have been
reported. The reliability ndings for support
needs assessment scales that have been reported
in peer-reviewed, professional journals are summarized in Table 7.1.
Of the 19 articles published in peer-reviewed
journals where reliability data on support needs
scales were reported, 12 provided ndings relevant
to the SIS-A, including the original English language version and 4 translated versions.
Information on reliability was found in two articles
relevant to the SNAP, and the CCC, SIS-C, I-CAN,
NSSQ, and NC-SNAP, each had one article where
ndings were reported. No reliability ndings
were found for the CANS. Collectively, the support needs scales in Table 7.1 have strong reliability properties (with the possible exception of the
CCC, discussed below). A degree of publication
bias may be at play, as it would likely be difcult
to justify publishing an article using data from a
scale that did have reasonably strong reliability.
151
Internal Consistency
The most easily comparable ndings between
studies are those pertaining to the internal consistency of items. This analysis does not require a
separate administration of a scale. Cronbachs
coefcient alpha was used by researchers to
determine the degree of homogeneity among
items on the SIS-A, SIS-C, and CCC. Findings
reveal that data from the SIS-A and SIS-C generated high correlation coefcients, providing
strong evidence of internal consistency based on
the guidelines provided by Landis and Koch
(1977). These ndings suggest that users of the
SIS-A and SIS-C can have condence in the
internal consistency of these scales. It is noteworthy that Thompson et al. (2014) were the only
researchers to examine internal consistency using
coefcient omega. They reported that coefcient
omega is appropriate to use in conjunction with
coefcient alpha when factor loadings are not
identical for all items, which was the case for the
SIS-C.
The alpha coefcients reported by Tadema
et al.s (2007) for the CCC were extremely low,
but it is probable that the manuscript simply contained a misprint. The only sentence in Tadema
et al.s manuscript in regard to reliability is, The
results indicate that it is a reliable instrument (in
all three categories alpha ranges from 0.091 to
0.097) (p. 151). If the coefcients actually are
near 0.09 then the conclusion in the text is wrong
because the items in this scale are most certainly
not homogeneous (and the scale is not reliable).
However, based on the accompanying text, it
seems more likely that the alphas are actually in
the 0.91 to 0.97 range and the additional 0 was
simply a typographical error.
TestRetest
Testretest ndings were reported for the SIS-A,
NC-SNAP, NSSQ, and I-CAN. Reliability coefcients for the SIS-A, NC-SNAP, and NSSQ
were quite strong under testretest conditions,
based on guidelines for evaluating the reliability
of adaptive behaviors scales provided by Cicchetti
and Sparrow (1981). In contrast, the testretest
coefcients for the I-CAN were mixed, with
some subscales being quite weak to the point of
being meaningless (e.g., an r as low as >01 was
IDD
IDD; TBI; psychiatric disabilities
IDD
I-CAN
NSSQ
NC-SNAP
SNAP
SNAP
Psychiatric disabilities
IDD
Population
Mixed disability child population
Source
Tadema et al. (2007)
Scale
CCC
Table 7.1 Reliability ndings reported in peer-reviewed journals for support needs assessment scales
Findings
Internal consistency: alphas ranged from 0.091 to
0.097
Interrater: r was 0.99 (all domains very high rs)
based on observer scoring of interviews; Test
retest: rs on 19 sections ranged from 0.05 to 0.93
at 1-year and 0.01 to 0.94 at 2-year intervals
Testretest: mean percentage agreement was
92.2 % with the corresponding mean kappa of
0.80; interrater: mean percentage agreement was
87.2 % with the corresponding mean kappa of 0.68
Interrater: r = 0.73
Testretest: rs ranged from 0.86 to 0.97; interrater:
rs ranged from 61 to 0.91; disaggregating for 3
subgroups, the range of rs for testretest and
interrater were 0.650.93 for people with ID,
0.490.90 people with TBI, and 0.25 to 0.71 for
people with psychiatric disabilities
Descriptive data show that 22 people who were
assessed in order to establish funding levels were
scored as having markedly more intense support
needs than when they were assessed previously for
research purposes
Internal consistency: alphas ranged from 0.58 to
0.94
Internal consistency: alphas ranged from 0.87 to
0.93
Interrater: interrespondent (consumer v staff) rs
ranged from 0.31 to 0.80; staff consistently rated
support needs as more intense compared to
consumers
Internal consistency: alphas ranged 0.83 to 0.94;
interrater rs 0.67 to 0.98
152
J.R. Thompson and S. DeSpain
IDD
IDD
IDD
SIS-C
Psychiatric disabilities
IDD
IDD
7
Community Support Needs
153
154
reported). Whereas time between test administrations ranged from 1 day to 1 month with test
retest studies concerning the SIS-A, NC-SNAP,
and NSSQ, Riches et al. (2009b) collected I-CAN
testretest data at 1 and 2 year intervals. It is logical to assume that, in general, the shorter the
interval the higher will be the estimated reliability due to the fact that there would be fewer confounding events (e.g., changing health status)
occurring between administrations. Therefore,
the low testretest reliability on some of the
I-CAN subscales may be attributable to the much
longer length of interval between administrations
in comparison to procedures used by researchers
investigating the other scales.
Considering the different intervals used in
assessing testretest reliability begs a broader
research question concerning the extent of time
that one would expect peoples intensity of support needs to change and therefore prompt a reassessment. How long do support needs assessment
results remain valid in the absence of a clear
intervening event such as a major trauma that signicantly alters physical-motor functioning? At
this time there is no empirical basis to suggest
when a reevaluation is warranted, although it is
undoubtedly true that over time peoples support
needs do change in important ways.
Interrater Reliability
Although researchers investigating the I-CANs
testretest reliability might have used an overly
stringent process for assessing testretest reliability of this scale due to the length of their test
administration intervals, their process for assessing interrater reliability was considerably less
stringent than procedures used by the other
researchers. The I-CANs interrater reliability
did not involve two separate administrations of
the scale. Rather, their data were collected during a single administration involving two observers: one who conducted the interview and scored
the scale and one who observed the interview
and scored the scale as it took place (Riches
et al., 2009b). The near perfect coefcients of
0.99 were not surprising when considering that
both recorders were observing the exact same
event. It could be argued that these researchers
Validity
The concept of test validity refers to the extent to
which an assessment tool truly measures the construct (in this case, support needs) that it is suppose to measure. Although this description may
seem straightforward, assessing the validity of
any assessment instrument requires multiple
evaluative judgments that are based on empirical
evidence as well as theoretical justication
(Salvia & Ysseldyke, 2007). Moreover, judgments about validity require multiple investigations that through converging evidence enable
one to have increasing (or decreasing) condence
in the validity of an assessment scale.
Historically, there have been three general
classes of evidence related to the validity of an
assessment tool: content validity, criterion-related
validity, and construct validity. While acknowledging that the boundaries between different
types of validity can be blurry, Salvia and
Ysseldyke (2007) succinctly describe each type
of validity in the following way: evidence related
to test content as content validity; evidence of the
relationship between the test and other performances as criterion-related validity; and evidence
related to the internal structure, evidence of
155
Content Validity
Content validity refers to evidence showing a
scales content has been carefully examined. For
example, have the developers of a scale provided
evidence that assessment items were based on a
theoretical model and/or a review of professional
literature? Were experts, other than the scale
developers, involved in making judgments regarding the appropriateness of items included in the
scale or the comprehensiveness of item content?
Thompson et al. (2002) provided content
validity evidence for the SIS-A by explaining the
scales connection with the conceptual work of
AAIDDs 9th edition of its denition and
classication manual (Luckasson et al., 1992)
and describing how a literature review involving
33 descriptors and approximately 1500 sources
were used to generate an initial item pool of 130
indicators of support needs. Their next step in the
development of this scale was to use Q-Sort
methodology with 50 experts in the eld of IDD
to group the indicators into 12 initial support
domains that served as the structure for the pilot
version of the scale. Translated versions of the
SIS-A have also employed additional methods to
promote content validity. For example, Verdugo
et al. (2010) used as expert judges and a systematic agreement analysis process to assess the
adequacy of the Spanish translation.
In regard to the SIS-C, the rst step of the
research team was to pull items from the SIS-A
that at face value appeared to be as applicable for
children as they were for adults (e.g., extra support needed for toileting). After that, the same
process to develop the SIS-A (i.e., literature
review, Q-Sort by team of experts) was used to
develop a pilot-test version of the SIS-C
(Thompson et al., 2014).
Content validity evidence for other support
needs scales has been less thoroughly described.
Riches et al. (2009b) made reference to a precursor of the I-CAN that was developed in the late
156
Criterion-Related Validity
An assessment has criterion-related validity
when data suggest it is effective in predicting criterion associated with a construct (Salvia &
Ysseldyke, 2007). It can be established when criterion measures are obtained at the same time as
the assessment scores and data reveal that assessment scores accurately estimate scores from the
related criterion measure. For example, in terms
of a support needs assessment scale, researchers
could demonstrate criterion validity of a scale if
scores were positively correlated with respondent
reports of the intensity of support needed by the
person being assessed. Evidence for criterionrelated validity can also be gathered when assessment scores are related to a measure that is
logically associated with the construct. For
example, it is logical to assume that a measure of
the intensity of supports a person needs would
have a reciprocal relationship with a measure of
personal competence, such as an IQ score or AB
scale score.
Table 7.2 summarizes evidence for criterionrelated validity that has been reported on the support needs scales included this review.
As mentioned earlier, there can be ambiguity
when determining what types of evidence supports different aspects of validity (i.e., content,
criterion, or construct). This was the case in this
review when deciding whether correlations
between scores on support needs scales and single measures of personal competence pertained
to criterion-related or to construct validity. For
instance, Verdugo et al. (2010) discussed the correlation between SIS-A scores and AB scores in
the construct validity section of their article,
whereas Guscia et al. (2006a) reported SNAP and
AB correlational ndings in their criterionrelated validity section. The matter comes down
to how criterion-related and construct validity are
dened and interpreted.
In one sense, support needs and personal competences are related constructs because of their
reciprocal relationship (as personal competence
decreases it is logical to assume that support
needs increase), and therefore investigating the
relationships between the two types of measures
pertains to criterion-related validity. In another
157
Table 7.2 Criterion-related validity ndings reported in peer-reviewed journals for support needs assessment scales
Scale
CANS
Source
Tate (2004)
I-CAN
NSSQ
SNAP
SIS-A (Dutch
translation)
SIS-A (Dutch
translation)
SIS-A (English version)
SIS-A (Spanish
translation)
SIS-A (French
translation)
Lamoureux-Hebert and
Morin (2009)
SIS-A (French
translation)
Lamoureux-Herbert,
Morin, and Crocker
(2010)
Research Method
CANS scores were correlated
with two measures of
functional outcome (the
CHART and SPRS)
I-CAN domain scores were
correlated with adaptive
behavior measures (the ICAP)
NSSQ scores were correlated
with scores from the Global
Assessment of Functioning
(GAF) scale and Social and
Occupational Functioning
Assessment Scale (SOFAS)
The SNAP was correlated
with scores from the SIS-A &
ICAP, as well as staff
estimates of support needs.
For comparison, SIS-A and
ICAP scores were also
correlated with staff
estimates.
A subset of SIS-A scores
shared factor loadings with
items measured on two
adaptive behavior scales
SIS-A scores were correlated
with three subscale scores on
the SIB-R
SIS-A scores were correlated
with subscale scores on the
Vineland Z
SIS-A scores were correlated
with two AB measures: the
ICAP and the ABS
Findings
Coefcients ranged from
0.46 to 0.85 for the sections
of the CANS with sections
of these two instruments
Coefcients ranged from
0.45 to 0.62 with the I-CAN
and ICAP
Coefcients ranged from
0.26 to 0.49 for the sections
of the NSSQ with sections of
these other two instruments
158
Table 7.2 (continued)
Scale
SIS-A (Spanish
translation)
Source
Ortiz et al. (2010)
SIS-A (Spanish
translation)
Research Method
SIS-A scores were correlated
with Global Assessment of
Functioning (GAF) scores
SIS-A scores were correlated
with rater estimates of support
needs corresponding to each
subscale domain as well as
overall needs; SIS-A scores
were correlated with ICAP
scores
SIS-A scores were correlated
with rater estimates of support
needs corresponding to each
subscale domain as well as
overall needs; SIS-A scores
were correlated with ICAP
scores
Findings
Coefcients ranged from
0.57 to 0.67 between SIS-A
scores and GAF scores
Coefcients for SIS-A/
Rater Estimates scores
ranged from 0.28 to 0.65.;
coefcients for SIS-A/
ICAP scores ranged from
0.11 to 0.67
Coefcients for SIS-A/
Rater Estimates scores
ranged from 0.64 to 0.93;
coefcients for SIS-A/
ICAP scores ranged from
0.49 to 0.59
Construct Validity
A test can be determined to have construct validity
if there is converging evidence that it truly measures
the theoretical construct its developers intended it to
measure. According to Salvia and Ysseldyke (2007),
assessment scale developers must rely on indirect
evidence or inference (p. 152) to establish construct validity. In a real sense we dont validate
inferences from tests or other assessment procedures; rather, we conduct experiments to demonstrate that the inferences are not valid. The continued
inability to disconrm the inferences in effect validates the inferences (p. 152).
Table 7.3 provides summaries of ndings
related to the construct validity of the scales.
As with content and criterion validity, the
ndings across the 17 investigations of construct
159
validity suggest that there is considerable evidence supporting the construct validity of the
support needs assessment scales during the past
15 years. Converging evidence is apparent in the
ndings related to correlations with related measures, group differentiation, intercorrelations of
subscale scores, and factor structure.
160
Table 7.3 Construct validity ndings reported in peer-reviewed journals for support needs assessment scales
Scale
CANS
Source
Tate (2004)
I-CAN
I-CAN
NC-SNAP
SNAP
SIS-A (Dutch
translation)
SIS-A (Chinese
translation)
SIS-A (English
version)
SIS-A (Spanish
translation)
Research method
Logistic regression analyses were
used to investigate the extent to
which the CANS distinguished
people who are independent from
people requiring some level of
support
Correlations between I-CAN scores
and Quality of Life (QOL)
measures were investigated
stepwise multiple regression
analyses, with support hours as the
dependent variables, were used to
investigate variance explained by
I-CAN
Correlations between a
classication algorithm developed
based on I-CAN scores with
clinical judgment regarding level of
support need
NC-SNAP, ICAP, and DDP
(questionnaire addressing of needs
for services) data were correlated
with a level of support need
determined by the jurisdictional
agency.
SNAP, SIS-A, and ICAP scores
were analyzed in regarding to
discriminating between subgroups
Findings
Statistically signicant
differences on the CANS scores
were found among subgroups
with different levels of support
needs.
Correlations ranged from 0.15 to
0.57 with ICAN scores and the
QOL measures 40 % of daytime
support hours and 27 % of paid
24-h support was predicted by
I-CAN scores
161
Source
Lamoureux-Hebert
and Morin (2009)
SIS-A (Dutch
translation)
SIS-A (Dutch
translation)
SIS-A (English
version)
SIS-A (English
version)
SIS-A (Spanish
translation)
Thompson et al.
(2002)
Verdugo et al. (2010)
SIS-A (English
version)
Wehmeyer et al.
(2009)
SIS-C
Thompson et al.
(2014)
Research method
SIS-A scores were correlated with
two measures level of intellectual
severity
Conrmatory Factor Analysis
(CFA) was used to evaluate a
six-factor model (based on the
SIS-A subscale structure).
Invariance analysis was used to test
the factor structure across a variety
of subgroups.
ANOVA procedures were used to
analyze SIS-A SNI scores in regard
to discriminating between
subgroups with different numbers
of disabilities
Findings
Correlations between level of
severity of ID and SIS scores
ranged from 0.56 to 0.69
Goodness-of-t tests associated
with CFA provided evidence for
a 6-factor model based on the
subscale structure of the
SIS-A. Invariance analysis
revealed the 6-factor model was
robust across subgroups
SIS-A SNI scores predicted
membership in one of three
groups: a group with only one
motor disability, a motor
disability plus one other
disability, a motor disability plus
two or more other disabilities
Coefcients ranged from 0.79 to
0.90 in sample 1 and 0.69 to
0.85 in sample 2
Coefcients ranged from 0.18 to
0.74
Coefcients ranged from 0.47 to
0.88
Coefcients between subscale
scores and level of ID ranged
from 0.42 to 0.52.
Coefcients among subscales
ranged from 0.78 to 0.88, with
subscale total scores ranging
from 0.90 to 0.95.
SIS-A was more effective in
predicting an existing
extraordinary funding group
membership than the DDP, even
though the existing extraordinary
funding group was congured, in
part, using DDP data.
162
Group Differentiation
Table 7.3 presents ndings from multiple studies
that have shown that support needs assessment
scales were useful in predicting group membership: (a) The CANS distinguished people reporting that they were independent from people
reporting that they needed some level of
support(Tate, 2004); (b) the I-CAN predicted
support hours people received (Riches et al.,
2009b); (c) the NC-SNAP predicted service need
level (Hennike et al., 2006); (d) the SNAP predicted categorization based on number of disabilities and severity of disability (Guscia et al.,
2006a), and (e) SIS-A predicted length of disease
of mental health patients (Jenaro et al., 2011),
quantity of disability conditions (Smit et al.,
2011) and funding level (Wehmeyer et al., 2009).
Intercorrelation of Subscale Scores
Several research teams investigated the extent
of intercorrelations of the SIS-A subscales.
The logic underlying these investigations is
that evidence of subscale intercorrelations
(0.40 to 0.90 according to MacEachron, 1982)
indicates the subscales are measuring the same
overall construct. As can be seen Table 7.2,
several translations of the SIS-A were investigated by multiple research teams and, in each
instance, data were collected that showed
strong intercorrelations among the subscales.
Thompson et al. (2014) reported a similar
finding for the SIS-C.
Factor Structure
Findings pertaining to a subscale intercorrelation
must be balanced by evidence that subscales also
provide unique information. Therefore, a key
indicator of construct validity is factorial validity.
Not only should items on an entire scale share
variance in a manner that suggests a common
construct is being measured, but because subscales suggest there are multiple dimensions of a
construct, there should also be evidence for a
multidimensional
latent-factor
structure.
Investigations of factor structure have been lim-
Limitations
An important limitation of this review was the
omission of ndings from the grey literature.
There could very well be evidence to support the
reliability and validity of the scales beyond what
has been reported in peer-reviewed journal articles. Anyone considering using any of the scales
included in this review should investigate other
information that could be available in regarding a
scales psychometric properties.
163
developing new assessment tools that enable professionals to better understand the support needs
of people with IDD. The Support Needs
Assessment and Planning Process shown in
Fig. 7.1 illustrate how information from PCP processes and supports needs assessments can be
used to inform planning at the individual level.
The initial version of this process was presented
in the rst article reporting data on the SIS-A
(i.e., Thompson et al., 2002).
Component 1 requires completing a PCP process and the goal is to get a unied vision among
key stakeholders as to what would constitute
desired life conditions, experiences, and opportunities. Information from Component 1 includes
identifying discrepancies between what is and
what could be, as well as identifying aspects
of the persons life that are very important to
maintain. Also, Component 1 requires prioritization. There must be consensus on what is most
important to maintain and change, as well as
what is relatively less important.
Component 2 involves an assessment of support needs such as is completed through using
one of the supports needs assessments reviewed
in this chapter. A structured support needs assessment not only provides useful information to the
planning team when developing an actionable,
annual plan (Component 3), but also assures that
a persons support needs are comprehensively
considered. Informal assessment of support
needs, such as is completed through direct observations and anecdotal logs, can supplement information from an assessment scale.
Component 3 is the actionable plan. This
should be an optimistically realistic plan where
settings and activities in which the person will
be involved during a typical week are specied, environmental modications and activity
adaptations are carefully thought through, and
personalized supports are unambiguously identied. Additionally, identifying who is responsible for following through on specic actions is
necessary..
It is important to note that the arrows go back
and forth between Components 3 and 4. This is
an acknowledgement that support plans hardly
ever proceed without a hitch. Component 4,
Component 2:
Assess Support Needs Using a Valid
Support Needs Assessment Scale
Component 5:
Evaluate the ISP
Do the environmental modifications and activity adaptations continue to meet the needs of
the person? In not, what needs to be changed?
Do the personalized supports continue to meet the needs of the person? In not, what needs to
be changed?
Is the person satisfied with his or her participation and with the setting and activities
identified in the plan? If not, why? And, what changes should be considered?
Has the persons desired life experiences or support needs changed in important ways? If
so, return to components 1 and/or 2.
Component 4:
Implement and Monitor the ISP
Did people follow-through on their commitments?
Is the plan working as anticipated?
Are there any obstacles or unforeseen difficulties that need to be addressed?
Component 3:
Develop an Individualized Support Plan (ISP)
In what settings and activities will the person participate? What will he or she be doing?
How can the settings be modified or activities be adapted so that the person is, to the greatest
extent possible, fully engaged? Is there any technology that would be helpful?
What personalized supports will be provided? Who will arrange the supports? Who will
provide the supports?
Component 1:
Identify Desired Life Experiences and
Personal Outcomes Using a PersonCentered Planning (PCP) Process
164
J.R. Thompson and S. DeSpain
Monitoring the Support Plan, is critically important because there will likely be unforeseen difculties that need to be addressed. Without a true
commitment to monitoring, there is a very real
danger that planning team members will come up
with grand plans that never get put into action
due to a lack of follow-through. A responsive
process calls for people to be accountable for the
commitments they make.
The nal component is evaluation. It is important to acknowledge that personal preferences
and support needs change over time. Supporting
people with IDD in community settings and
activities is hard, ongoing work. It is work that is
never nished. Plans must be revised when they
no longer meet a persons needs, and this may
require returning to Components 1 and 2 (i.e.,
initiating a new person-centered planning process and reassessing support needs).
Conclusion
In this chapter, we describe leading PCP processes and support needs assessment scales, and
summarize research evidence supporting their
use. The PCP approach to planning is logically
appealing, but there is a limited research base in
regard to its effectiveness. Several new scales to
assess the support needs of people with disabilities have been introduced over the past 15 years,
but it is evident that the work of developing valid
tools to measure support needs is still in its
infancy. Although much progress has been made
in developing new tools and improving professional practices related to effectively supporting
people with IDD in community settings, it is
clear that much work remains to be done.
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Thompson, J. R., & Viriyangkura, Y. (2013). Supports and
support needs. In M. L. Wehmeyer (Ed.), Oxford
handbook of positive psychology and disability
(pp. 317337). Oxford, England: Oxford University
Press.
Thompson, J. R., Wehmeyer, M. L., Hughes, C., Shogren,
K. A., Little, T. D., Copeland, S. R., Tass, M. J. (in
press). Supports Intensity Scale Childrens Version.
Washington, DC. American Association on Intellectual
and Developmental Disabilities.
Thompson, J. R., Wehmeyer, M. L., Hughes, C., Shogren,
K. A., Palmer, S. B., & Seo, H. (2014). The Supports
Intensity Scale Childrens Version. Inclusion, 2,
140149.
Quality of Life
Robert A. Cummins
Introduction
The adoption of quality of life (QOL)
measurement within the eld of intellectual disability was catalyzed by deinstitutionalization,
which began within Anglophone countries during the 1970s. This massive relocation of people,
with all levels of disability, moving back into
open society, caused intense media interest. The
resulting publicity included exposure of living
conditions in the institutions of that time. The
view that was portrayed shocked the sensibilities
of many ordinary citizens, including the parents
of the people being relocated. One reason these
parents had made the difcult decision to institutionalize their child was the promise of a safe and
secure environment for their vulnerable offspring. Now, they were being confronted by the
reality of institutional care.
Early QOL researchers operating within this
milieu saw the potential of their measures to
make service delivery more accountable and so
to mold policy. Their initial measures were objective indices of QOL, such as the conditions of
accommodation, freedom of movement, etc. But
169
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170
Issues of Terminology
Almost 20 years ago, Cummins (1997a) noted
the wide diversity of denitions and meanings
attributed to the term QOL and the need for precise denition. Sadly, the contemporary literature
offers no more precision. The term QOL has
recently been used as a synonym for subjective
well-being (SWB: Cini, Kruger, & Ellis, 2013), a
global rating of life quality (Forrest et al., 2014),
as a synonym for health-related quality of life
(Griva et al., 2014), while other authors use the
term QOL with no denition at all (Wu, 2013).
Within the realm of subjective QOL, the
wildly different meanings that have been given to
the terms well-being (Cummins, 2014a) and
happiness (Cummins, 2013a, 2013b) have been
documented in some detail. From these reviews
and from scanning the contemporary literature, it
is apparent that there are no naming rules for the
variables in this area either. Authors use any term
that takes their fancy and then use the term to
mean whatever they like. Worse, they rarely offer
a denition of the term(s) they use.
All this is so despite many excellent reviews
of SWB composition and nomenclature (Diener,
2006; George, 1979; Stones & Kozma, 1980).
However, authors rarely refer to these authorities
in making their personal choice of terminology,
and the result is a catastrophic situation of
nomenclature anarchy. It means that researchers
are commonly using the same term as their colleagues to refer to a quite different construct. In
other words, researchers frequently misunderstand the results that other researchers are
describing.
In summary, the only way an author, or a
reader, can be certain about what variable is
under discussion is to take personal control. This
can be achieved by the application of three linked
strategies as:
Quality of Life
171
172
R.A. Cummins
Quality of Life
Contemporary Ideas
As has been described, the discipline of
economics has traditionally used money as a
proxy for happiness. Thus, it is assumed from
within economics, rich nations are happy nations
and the rationale for increasing GDP is to make
citizens ever happier. Within the social sciences
of psychology and sociology, however, this
assumption has been empirically demonstrated to
be false since the early 1970s. In their insightful
review of the evidence, two of the leading
researchers at that time, Campbell and Converse
(1972), concluded We have become deeply
impressed at the degree to which subjective states
can pull apart from what might be deduced on
the basis of our current ways of understanding
objective situations (p. 8).
Over the intervening decades, a galaxy of
papers have demonstrated the uncertain relationship between money and SWB, and the fact that
objective measures of wealth cannot be used as
proxy measures of SWB has emerged as a fundamental truth (for a review, see Cummins, 2000b).
The same lack of simple relationship has been
emphatically demonstrated between physical
health or disability and SWB (e.g., Cummins,
2012; Cummins, Woerner, Tomyn, Gibson, &
Knapp, 2006; Fabian, 1991). Such ndings have
deep implications for the way QOL data are
treated.
Most crucially, since there are two separate
dimensions to life quality and since both are
important measures in their own right, each
dimension needs to be measured to give a balanced overview of life quality. While this is quite
commonly accepted by researchers in the area
today, many still fail to comprehend that objective and subjective indicators are not only completely different from one another but cannot be
validly combined into a single metric. Thus, each
form of measurement must be considered separately (Andrews & Withey, 1976; Lehman, 1983).
There are at least two reasons for this (Cummins,
2000a). First, objective items do not form scales;
they form lists. Objective items normally do not
have a built-in source of common variance that
causes them to intercorrelate. Thus, objective
173
174
R.A. Cummins
Quality of Life
175
R.A. Cummins
176
Table 8.1 Levels of general satisfaction and happiness
N
32
Data
check %SM
Y/N
mean
N
53.13
(SD)
Study
Parmenter et al.
(1991)
Rosen, Simon,
and McKinsey
(1995)
Schwartz and
Ben-Menachen
(1999)
Heller, Factor,
and Hsieh
(1998)
Country
AU
Scale
H1
US
PALS
IQ = 49 (15)
CH
100
84.36
(18.91)
IL
LSS
Mild/moderate
LSS
Mild/moderate
Verri et al.
(1999)
IT and AU
US
COMID4-S
COMA4-S
PALS
Mild/moderate
Mild/moderate
Non-ID
Non-ID
Mild/moderate
20
18
20
37
14
37
14
44
110
92
100
46
Y1
US
SH
PA
IN
NH0
NH0
NH + 2
NH-SH + 2
PA
SH
CON
GP
SH
60.18
57.74
57.32
53.5
59.2
57.9
70.2
83.0
75.3
73.82
72.67
87.0
(2.96)
(3.72)
(5.49)
(20.7)
(12.7)
(15.5)
(10.6)
(23.4)
(22.3)
(10.05)
(8.85)
(20.3)
AU
LSS
Mild/moderate
IN + CH + SH
49
Y3
68.68
(15.20)
Simon et al.
(1995)
Yu, Jupp, and
Taylor (1996)
Y1
Y2
Y2
Quality of Life
177
3.
4.
5.
6.
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178
Quality of Life
179
180
Homeostatic Processes
The affect produced by HPMood provides a
steady background to consciousness, which inuences general feeling about the self. This background normally approximates the set point and
so provides the target level for homeostatic management. When average levels of felt affect deviate from this background, homeostatic processes
are activated for the purpose of restoring the level
of felt affect to set point.
The rst line of homeostatic defense is to
establish conditions for the self, which minimizes
the probability of homeostatic failure. The second line of defense is to use resources that will
facilitate rapid recovery after homeostatic failure.
R.A. Cummins
Quality of Life
Domain Compensation
When a threat is chronic, a process is activated
called domain compensation (Best, Cummins, &
Lo, 2000; Heidemeier & Gritz, 2013). This
involves an adjustment of the relative extent to
which a particular life domain contributes to
GLS. Domains that provide a chronic negative
experience, such as a poor work experience, are
de-emphasized, while domains that provide a
positive experience are emphasized. This focus
on life domains that are positive assists the maintenance of normal homeostasis.
In summary, these three homeostatic devices
of habituation, adaptation, and domain compensation act below our level of consciousness to
return the experience of affect back to set point.
Homeostasis is also assisted by a set of cognitive
buffers. These use cognition to restructure reality,
thereby helping to restore a normal positive sense
of self after a negative experience.
Internal Buffers: Cognitive
The cognitive buffers use various short-term cognitive devices to put a positive spin onto failure.
The ways they do this are quite varied, but they
can be classied according to the aspect of self
that is central to the defense. These aspects are
181
182
R.A. Cummins
Quality of Life
183
Institutions
and Deinstitutionalization
Historical Perspectives
There are many excellent accounts of the living
circumstances and life quality of people with an
intellectual disability throughout recorded history (e.g., Deutsch, 1949; Frohboese & Sales,
1980; Wolfensberger, 1972). These works do not
make pleasant reading. Low life quality was
almost guaranteed, not just for people with an
intellectual disability but anyone who was recognizably outside the normal range of appearance
or ability within society.
In the early days of civilization, when family
groups coalesced to form towns, the struggle for
survival meant there were few spare resources.
Each person had to contribute positively to his or
her family and to the community. Persons perceived to be socially deviant or handicapped were
considered to be a liability and were ostracized.
If they were manageable, not dangerous, and had
caring parents with adequate resources, they may
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And so it came about that the public was persuaded by the eugenicists, certain directors of
institutions, and public ofcials that the feebleminded were helpless, hopeless, and too dangerous to be at large (Packard & Laveck, 1976). New
legislation in the USA was passed to promote
widespread compulsory sterilization. This was
made possible through the infamous Supreme
Court decision by Justice Holmes, in which he
analogized sterilization to compulsory vaccination and declared that Three generations of
imbeciles are enough (Buck v. Bell, 274 U.S.
200, 1927).
The consequence of this new societal view was
that people with an intellectual disability became
not only removed from general society and incarcerated in institutions but also systematically sterilized. Some legislators went further. Packard and
Laveck (1976) reported the consequences of this
mind-set Carried to their extreme, these expressions turn into proposals for Hitlerian legislation,
such as the so-called death with dignity bill
introduced in the Florida State Senate. This bill
would permit the withholding of medical services
and medicine from retarded persons in State institutions, so that those with Downs syndrome, for
example, would succumb to pneumonia, to which
they are especially vulnerable (p. 111). As a
Quality of Life
185
186
Deinstitutionalization
During the latter half of the twentieth century, in
Western countries at least, there was a general
closure of institutions for people with an intellectual disability, with their relocation to sharehomes. In the text to follow, share-home will
be used as a generic descriptor for accommodation in society, which involves people with an
intellectual disability living outside an institution. This form of accommodation is most commonly in the company of other people who are
also intellectually disabled. But it may also be
with non-disabled people and sometimes with
staff. The share-home commonly has the appearance of a regular house but may also be a small
unit or a hostel with up to 20 or so other people.
The distinction between these various forms of
residence will only be made if it is important in
the context of understanding. Share-homes will
be distinguished from foster care homes and living with the persons own family.
Deinstitutionalization legislation was passed at
different times in different countries. For example, it was passed in Britain in 1971 (UK
Department of Health, 2001); in British Columbia,
Canada, in 1981 (Grifths & Curtis, 1984); and in
Victoria, Australia, in 1986 (Victorian
Government, 1986). Of course, the rate of deinstitutionalization also varied markedly with location. Effectively, however, by about 1990
throughout the Western world, the great majority
R.A. Cummins
4.
5.
6.
7.
Quality of Life
187
188
Public Attitudes
In 1976, the US Presidents Committee on Mental
Retardation stated that deinstitutionalization
is not simply an emptying out of the institutional
population. It is a total reorientation of society to
the care and treatment of mentally retarded persons. The issues surrounding this transition are
massive and manifold, but they constitute the
principal challenge of the next quarter century
(p. 23).
During the period when people with an intellectual disability were housed in institutions, the
attitude of the general public to these people was
generally dismissive or hostile. The residents
were generally feared because their behavior
appeared less predictable than normal, but this
did not matter much because they were removed
from general society. Such public attitudes mattered much more, however, when normalization
caused the placement of share-homes into the
extant communities of neighbors. Clearly, the
success of the planned integration was going to
be dependent on neighborhood attitudes.
When people were relocated from institutions,
their replacement accommodation was usually
located in the suburbs of cities and towns. These
share-homes generally appeared little different
from the surrounding dwellings, thus blending in
with their location. However, the new presence of
people with an obvious intellectual disability in a
neighborhood was, of course, quite noticeable to
neighbors, and this raised the ante in relation to
attitude. Neighbors were now much more likely
to encounter the residents as they used neighborhood amenities. Thus, the neighbors response
style (welcoming, indifferent, or hostile) became
an issue for the share-home staff to manage.
It seems rather obvious in retrospect that a priority for share-home staff should have been to
understand the psychology of relationship formation as it applied to integration. After all, the staff
had responsibility for managing the interaction
between residents and neighbors. Unfortunately,
however, there is scant evidence that they either
had or implemented such understanding. The
R.A. Cummins
Quality of Life
189
190
Everyone has the right to freedom of movement
and residence within the border of each state.
(United Nations General Assembly, 1948)
The mentally retarded person has, to the maximum
degree of feasibility, the same rights as other
human beings. (United Nations, 1971)
No disabled person shall be subjected, as far as his
or her residence is concerned, to differential treatment other than that required by his or her condition . (United Nations General Assembly, 1975)
R.A. Cummins
Quality of Life
191
research literature was not the positive neighborly welcome anticipated by the normalization
rhetoric. Rather, it was a picture of stoic acceptance by neighbors of a situation that they could
not change.
Attitudes of Families
to Deinstitutionalization
At the most general and theoretical level of
understanding, it is obvious that families will
have difculty in coming to terms with institutional closure and the physical relocation of their
relative. As observed by Taylor, Racino, Knoll,
and Lutyya (1986), the arguments for and
against institutions were conducted by professionals and bureaucrats, not by parents. The decisions that led to deinstitutionalization were
purely bureaucratic based on changing ideology.
So in a perfect world, it might be expected that
when the professionals and the bureaucrats
changed their collective minds to advocate deinstitutionalization, signicant energy would be
directed toward the consultation, education, and
counseling of parents. Bureaucracies, however,
do not usually operate in this fashion. They operate in an environment where information is power
and are consequently loath engaging in anything
more than token acts of consultation and information sharing. As a consequence, the negative
experience of deinstitutionalization for families
is compounded by bureaucratic and professional
insensitivity. Parents nd that this major life decision has been made for their institutionalized
relative with little or no consultation with that
person or their family (Lord & Hearn, 1987) and
certainly without the involvement of the family in
the earliest planning stages. So, families are faced
with a fait accompli.
Seemingly forgotten in this deinstitutionalization process is that parents have already gone
through an agonizing period of decision making,
which resulted in the institutionalization of their
child in the rst place. This difcult decision
likely engendered feelings of inadequacy and
guilt, given societal attitudes of parental responsibility. However, over the intervening years,
most parents would have adapted to the reality of
their situation. The great majority of parents
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R.A. Cummins
Quality of Life
193
(c)
(d)
(a) Concern that the share-home system is
unstable and impermanent (Conroy &
Bradley, 1985; Frohboese & Sales, 1980;
Lord & Hearn, 1987). At least in the USA,
this concern proved quite valid, especially
for small community-based units. Hill,
Bruininks, Lakin, Hauber, and McGuire
(1985) reported the following rates of stability over the 5-year period 19771982: foster
homes with one to four residents = 46 %;
group residences with staff who provide
care, supervision, and training of one to six
residents = 59 %; semi-independent units or
apartments housing one to seven residents = 26 %; boarding homes for one to ve
residents = 62 %; and total care homes for
one to four residents = 68 %. These gures
may be contrasted with the stability rate of
98 % for institutions housing 500 or more
residents. These gures, however, are not
transferable to Australia. In Victoria, for
example, all community residential units
opened since the deinstitutionalization program commenced in August 1984 have
remained in operation.
(b) Concern that the quality of service in the
share-home system will diminish over time
(Frohboese & Sales, 1980; Meyer, 1980;
Spreat et al., 1987). Such concerns are often
centered on the quality of medical service,
and it is interesting to note that some families
may hold a distorted view of their relatives
requirement for intensive medical attention.
(e)
(f)
R.A. Cummins
194
Relationship Formation
with Neighbors
At the beginning of the deinstitutionalization
journey in the 1970s, the whole concentration of
energies was to get people with an intellectual
disability into general society. A major implicit
expectation was that the mere fact of the sharing
of neighborhood space and facilities would be
sufcient to cause the new residents to be welcomed, accepted, and integrated into their new
neighborhood. Not only was this expectation
unrealistic, it should have been anticipated. The
idea that integration would take place through
passive exposure was counter to the social psychological theory at that time. The disappointing
reality, therefore, was that such people remained
physically within, but unintegrated with, the general society in which they lived (for a review, see
Cummins & Lau, 2003).
As research revealed the reality of nonintegration, it also demonstrated the friendship
networks of people living in share-homes to be
dominated by coresidents and members of staff.
But this was not the intention of normalization,
and as the reality of this situation became apparent, the issue of integration took on increasing
importance as an unresolved consequence of
deinstitutionalization. As noted by the UK
Department of Health (2001), helping people
sustain friendships is consistently shown as being
one of the greatest challenges faced by learning
disability services (paragraph 7.39).
Also during this period, a new kind of thinking evolved, which changed the focus from a
poorly dened integration to the more clearly
specied target of social inclusion. While this has
been dened in various ways, an excellent contemporary denition is provided by the Family
and Community Development Committee (2014)
who stated:
Social inclusion extends beyond simply being
present or passively participating in activities in
the community. For people with disability, like
everyone, social inclusion means experiencing
respect for difference and for individual aspirations. It means having control over their own lives
and having opportunities to contribute and participate in society in meaningful ways. It means feel-
Thus stated, social inclusion is clearly a worthy goal. Disappointingly, however, the committee also noted that there is currently no effective
tool for measuring social inclusion and therefore
no way to reliably determine whether interventions are effective in this respect or not. Moreover,
achieving inclusion encounters the same problems that have beset integration. It is hampered
by the obvious differences that exist between the
new residents and the neighbors. Quite apart
from the fact of the disability, the new residents
are relatively compromised on each of the three
objective cornerstones to the normal maintenance
of subjective well-being as income, achieving in
life, and relationships. Their earning capacity is
usually limited to their pension, and their sense
of achieving is limited to activities around the
home and, perhaps, menial employment, while
their relationships, certainly in the form of intimate friendships, tend to be very limited. All of
these decits will mitigate against the new residents and existing neighbors nding common
ground for a relationship.
Clearly, good intentions are not enough. What
seems to be largely missing from the integration
and social inclusion literature for people with an
intellectual disability is a clear statement of theoretical understanding, which can be used to operationalize effective strategies to attain the desired
goals. Before this theoretical background can be
presented, it is necessary to develop a sound basis
of agreed nomenclature.
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196
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198
Quality of Life
199
200
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Quality of Life
201
Staff Attitudes
The circumstances of living in a share-home are
going to be highly dependent on the attitudes of
the staff. If the staff are discontented, then this is
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204
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205
206
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Quality of Life
207
A number of observations can be made in relation to the 15 mean scores in Table 8.1 as
follows:
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209
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210
Quality of Life
211
Proxy Responding
Due to the nature of the persons disability, there
are substantial limitations to the complexity of
the questions that they can answer. Moreover, at
severe levels of intellectual disability, it is not
possible to have condence that people are able
212
Each of the above authors provided only anecdotal support for the idea that clinicians can make
valid SWB judgments on behalf of their patients.
The empirical literature, however, casts serious
doubt on such ability. Indeed, the difculty of
interpreting proxy reports has been specically
documented in relation to medical patients
(Sprangers & Aaronson, 1992). In relation to
children and adolescents, two reviews have concluded that proxies cannot be reliably substituted
for self-reports either in relation to behavioral/
emotional problems (Achenbach, McConaughy,
& Howell, 1987) or the feelings experienced by
R.A. Cummins
Quality of Life
Schedule (Ouellette-Kuntz, 1990) has been specically designed for the purpose of collecting
subjective proxy data. The authors contended, It
has been our experience that family members,
friends, and paid staff are very able to empathize
and communicate on behalf of people with disabilities (Ouellette-Kuntz & McCreary, 1996,
p. 274). At around this same time, I also developed a scale to be used by proxies within the
manual of the Comprehensive Quality of Life
Scale for people with an intellectual disability
(Cummins, 1997b). Even though this manual
urges caution in the interpretation of resultant
data, the fact of its inclusion provides tacit support for the use of this response mode if the people are unable to respond for themselves. It was
not until 2004 that this instruction was amended,
when the ComQol metamorphosed into the
Personal Wellbeing Index (Cummins & Lau,
2004). This new version then carried the warning
The scale must be administered on an individual
basis to the person with an intellectual disability.
It is NOT to be answered on behalf of the person by a caregiver or someone who knows the
person well. Such proxy responses are invalid in
relation to subjective measurement.
213
214
R.A. Cummins
Item Wording
The wording of each item is simpler and more
concrete than the original, and the term
satisfaction is substituted by the word happy.
For example, the question in the PWI-A How
satised are you with your health has been simplied in the PWI-ID to How happy do you feel
Quality of Life
Response Choice
A further modication is the exibility in
response formats. This comprises three alternative reduced-choice formats (5-, 3-, and 2-point
scales) for those who cannot cope with the standard 11-point response scale. This reducedchoice format is pictorial, represented by a series
of outline faces (from very happy to very sad) to
enhance comprehension. Importantly, however,
despite the use of these simplifying procedures,
there is a minimum level of cognitive abstraction
that is required to respond validly to the scale. In
practice, we have found that the PWI-ID is appropriate for people with a mild or upper-moderate
level of cognitive impairment. It cannot be reliably used to test anyone with a severe or profound level of disability. Such people do not have
the ability to provide valid self-reports of this
type (Chadsey-rusch, DeStefano, OReilly,
Gonzalez, & Coller-Klingenberg, 1992).
Pretesting
A unique feature of the PWI-ID is the pretesting
protocol, designed to exclude people who are
unable to respond validly to such scales. This
protocol includes an initial test for acquiescent
responding. If people are found to display this
characteristic, testing is terminated. It also
includes a test for response scale competence on
the 010 scale format. This involves assessing
whether they can count to ten. If they can, they
are asked various questions establishing whether
they can reliably respond to this scale format. If a
respondent is unable to count to ten, or fails to
provide a reliable response to questions using the
010 scale, they are tested for their ability to use
215
R.A. Cummins
216
scales, only one of which is labeled satisfaction. The other three are competence/
productivity, empowerment/independence, and
social belonging/community integration.
As evidence that the total scale does not measure SWB, Yu et al. (1996) found the QOLQ total
score did not correlate with SWB as measured by
the Lifestyle Satisfaction Scale (Heal & ChadseyRusch, 1985). Even data from the satisfaction
subscale seem not to represent SWB. For example, Rapley and Beyer (1996) reported a satisfaction subscale score of 36.5 points for people
living in community-based homes. This value is
way below the normative range for life satisfaction calculated in Cummins (2003) as 7080
points. The likely reason is that the items comprising the satisfaction subscale do not simply
measure satisfaction. In fact, only one of the
ten items actually asks about satisfaction (How
satised are you with your current home or living
arrangement?), and this is the evaluation of a
distal target. Three other items involve frequency
responses (e.g., how often do you feel out of
place in a social situation?), while four ask for a
comparison against other people (e.g., do you
have more or fewer problems than other people?)
instead of against their own internal standards.
As a consequence, the data from the satisfaction
subscale are not considered to measure SWB.
There are also severe procedural issues that
cast doubt on the validity of the data derived from
this scale. Perhaps the most important is that the
questions are read orally, with the respondent
using a 3-point response scale. Notably, while
engaging in this process, the respondent must
hold the question stem in memory while then
processing the multiple response options. This
procedure was abandoned by Halpern, Raffeld,
Irvin, and Link (1975) in favor of a simple yes/no
response as the task requirements were found to
be beyond the capacity of their adolescent group
with an IQ 68 8.4.
Schalock et al. (2002) reported the creation of
a new version of the questionnaire, modied in
the following respects: (a) the questions have
been simplied; however, the new questions are
not provided. (b) The response task has been
Conclusion
Two important factors have biased research into
the life quality of people with an intellectual disability. The rst is the ideology of normalization,
which continues to inuence the whole industry
of accommodation and service delivery to people
who are intellectually disabled. While this ideological inuence has been generally positive, the
negative consequences have not received the
attention they deserve. For example, a major aim
of normalization was to enhance the publics
acceptance of intellectual disability by actively
discouraging friendship networks between persons with an intellectual disability (see Rhoades
& Browning, 1977). The major strategy to
achieve this was to distribute such people through
the community, in order that they may more
easily form social relationships with non-disabled
people. So, this frame of reference does not recognize social relationships between people with
an intellectual disability as a positive aspect of
life. Moreover, as has been demonstrated, friendships involving non-disabled people are uncommon. Thus, measures of normalization should
certainly not be used alone as the basis for quality
of life evaluations. This caution has been raised
Quality of Life
217
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Functional Skills
Robert H. LaRue, Christopher J. Manente,
Erica Dashow, and Kimberly N. Sloman
Introduction
The acquisition and maintenance of functional
skills are among the most important educational
targets for individuals with intellectual and developmental disabilities. Functional skills are those
skills we possess that allow us to take care of ourselves and function independently in our natural
environment. For most of us, these skills are
readily acquired through typical life experiences.
For individuals with cognitive impairments, these
skills may require specic teaching strategies.
The acquisition of functional skills results in several favorable outcomes, including increased
opportunities for community integration and better overall quality of life (Ayres, Lowrey,
Douglas, & Sievers, 2011). In addition, functional skills allow individuals with disabilities to
have more opportunities to access reinforcers and
make choices in their daily lives, which has
shown to have positive effects on work completion and inappropriate behavior (e.g., Shogren,
Fagella-Luby, Bae, & Wehmeyer, 2004; Watanabe
& Sturmey, 2003).
229
230
231
Functional Skills
Domestic skills
Community skills
Pre-vocational skills
Vocational skills
Recreational skills
Social skills
Behavior
management skills
Examples
Self-bathing/showering oneself
Teeth brushing
Hair brushing
Wash/dry hands
Self-toileting
Dressing independently
Self-feeding
Using a microwave
Cutting fruits/vegetables
Washing, drying, folding, and
sorting clothing
Vacuuming
Sweeping
Doing dishes
Making the bed
Street crossing
Store recognition
Using public transit
Making purchases
Counting money/change
Sorting
Alphabetizing
Reading
Simple assembly (components
of a larger task)
Product assembly
Filing
Mail delivery
Cleaning (e.g., mopping,
washing windows)
Exercise
Bowling
Playing video games
Reading a book
Respecting personal space
Perspective-taking
Conversation skills
Turn taking
Sharing
Asking for or offering to help
Greeting others
Giving/accepting compliments
Choice making
Communicating preferences
Functional communication
Self-management
232
Functional Skills
233
234
abilities within the realm of functional performance (Partington & Mueller, 2012). The AFLS
is a tool for caregivers that meets the needs of
learners from 2 years of age and extending
throughout the life span for which a guiding
assessment, tracking grid, and curriculum is
needed. The creators of the AFLS dene the term
caregiver as an individual who knows, cares
for, supports, and works with a learner. Caregivers
include parents, teachers, paraprofessionals,
behavior analysts, group home staff, community
or government-agency personnel, and a variety of
other professionals. The AFLS consists of six
assessment modules designed to evaluate an individuals performance of functional skills across
the domains of Basic Living Skills, Home Skills,
Community Participation Skills, School Skills,
Vocational Skills, and Independent Living Skills.
Specically, the skills that are targeted in the
Basic Living Skills module of the AFLS include
those skills related to self-management, basic
communication, dressing, toileting, grooming,
bathing, health, safety and rst aid, and nighttime
routines. The Home Skills module targets skills
related to living at home with a caregiver including the consumption of meals, doing dishes,
laundry, chores and general housekeeping,
household mechanics, kitchen-related tasks,
cooking, and leisure activities. The Community
Skills module targets an individuals ability
across the categories of basic mobility, community knowledge, shopping, eating in public,
money, using a phone, telling time, and social
awareness and manners. The School Skills module targets those skills related to academics,
school routines, navigating the school environment, and social skills. The Vocational Skills
module includes job seeking skills, compliance,
rule following, vocational interests, conict resolution, job readiness skills, working with others,
hygiene, transportation, job training skills, social
skills, clerical skills, attendance, punctuality,
organization, and nancial issues. The
Independent Living Skills module targets
household organization, household maintenance,
household
cleaning,
community
travel,
transportation, advanced kitchen skills, meal
Functional Skills
235
236
Age range
Parent = birth and up
Teacher = 321 year
Assessment method
Rating scales
AFLS
2 years and up
Rating scales
Direct naturalistic
observationa
Performance measuresa
SIB-R
Infant and up
Rating scales
Checklist
Duration
<60 min
Varies
<60 min
Domains
Communication
Daily living
Socialization
Motor skills
Basic living
Home
Community participation
School
Vocational
Independent living
Motor function
Social interaction
Communication
Personal living
Community living
Functional Skills
237
Conclusion
Functional skills are among the most important
skills to teach for individuals with intellectual and
developmental disabilities. The acquisition of
these skills allows individuals to be more independent, have increased opportunities to make
choices, and fully participate in their community.
Functional skills encompass a wide range of areas
including self-care, domestic, vocational skills,
social skills, and behavior management skills.
238
Functional Skills
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Disabilities, 47(1), 313.
Favell, J. E., Favell, J. E., Riddle, J. L., & Risley, T. R.
(1984). Promoting change in mental retardation facilities: Getting services from the paper to the people. In
W. P. Christian, G. T. Hannah, & T. J. Glahn (Eds.),
Programming effective human services: Strategies for
institutional change and client transition (pp. 1537).
New York, NY: Plenum.
Moore, D. J., Palmer, B. W., Patterson, T. L., & Jeste,
D. V. (2007). A review of performance-based measures of functional living skills. Journal of Psychiatric
Research, 41(1), 97118.
Partington, J. W., & Mueller, M. M. (2012). AFLS. The
assessment of functional living skills. Marietta, GA:
Stimulus Publications.
Shogren, K. A., Fagella-Luby, M. N., Bae, S. J., & Wehmeyer,
M. L. (2004). The effect of choice-making as an intervention for problem behavior: A meta-analysis. Journal of
Positive Behavior Interventions, 6, 228237.
Sparrow, S. S. (2011). Vineland adaptive behavior
scales. Encyclopedia of Clinical Neuropsychology,
26182621.
Sparrow, S. S., Balla, D. A., & Cicchetti, D. V. (1984).
Vineland adaptive behavior scales: Interview edition,
survey form manual. Circle Pines, MN: American
Guidance Service.
Sparrow, S., Cicchetti, D., & Balla, D. (2005). Vineland II:
A revision of the Vineland adaptive behavior scales:
I. Survey/caregiver form. Circle Pines, MN: American
Guidance Service.
Sparrow, S. S., Cicchetti, D. V., & Balla, D. A. (2008).
Vineland adaptive behavior scales: (Vineland II), the
expanded interview form. Livonia, MN: Pearson
Assessments.
Watanabe, M., & Sturmey, P. (2003). The effect of choicemaking opportunities during activity schedules on task
engagement of adults with autism. Journal of Autism
and Developmental Disorders, 33, 535538.
Part II
Treatment and Training Modalities
10
Introduction
Complementary and alternative medicine (CAM)
is comprised of a diverse group of medical and
health care systems, practices, and products
that are not presently considered to be part of
conventional medicine (National Center for
Complementary and Alternative Medicine,
2012). Complementary medical practices are
used together with standard medical practices
(e.g., the use of massage to reduce pain following an injury) while alternative medicine practices are used in place of standard medical care
(e.g., use of a macrobiotic diet rather than chemotherapy to treat cancer). Generally, complementary and alternative practices are discussed
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Elimination Diets
The Feingold Diet. (Also Called
the Kaiser-Permanente, or K-P Diet)
Feingold (1974), an allergist, recommended
eliminating tartrazine (yellow dye #5) and aspirin in some patients, as it is accepted that a
small number of atopic individuals are sensitive
to these substances. As the number of articial
colors, avors, and preservatives began to grow
in the food supply, he considered the possibility
that these chemically similar small molecules
might behave like tartrazine, and that foods
with high levels of natural compounds that are
structurally similar to salicylate might behave
like aspirin. In the course of seeing a patient
with particularly treatment-resistant hives, he
employed this broader elimination strategy and
achieved successful resolution of her hives.
Unexpectedly, her psychiatrist reported a coincident and remarkable resolution of her signicant psychiatric symptoms. Admittedly not an
expert in behavior, Feingold tried this broader
elimination strategy with several children in his
allergy practice who were also diagnosed with
hyperkinesis-learning disability. He noted
clinically that approximately 50 % improved in
terms of their hyperkinesis and school performance, but also in irritable mood and the quality of their sleep. He noted that, although they
are not allergens, these small molecules
behaved like allergens, with just a miniscule
exposure causing a full reaction, which typically started gradually and lasted from 24 to
72 h (Feingold, 1974). As public awareness of
the disorder currently called attention decit
hyperactivity disorder (ADHD) grew, this diet
became associated with this disorder, though
there was never direct overlap in the symptoms
10
Research
After the publication of several positive anecdotal
reports by Feingold and others, experimental
studies of varying quality began to appear in the
late 1970s and early 1980s. Early clinical studies
reported a much lower level of response (515 %
depending on how response was dened), or
signicant positive response in only a small number of participants, and research in the USA
slowed almost to a halt by the end of the 1980s.
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Research
This hypothesis was typically studied by
instituting an oligoantigenic diet, a diet consisting of only a few low-allergenic foods (such as
lamb, chicken, potatoes, rice, banana, apple,
brassica vegetables, water, and supplements).
Those who improved had other foods reintroduced sequentially to identify which foods
caused an exacerbation of symptoms, and a
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detect in vivo binding of gluten and casein to opioid receptors, this hypothesis remains theoretical.
Research
There are mixed results in studies of the
effectiveness of the gluten/casein-free diet in
individuals with ASD. Only three randomized,
controlled trials have been conducted to date.
One of the trials included 20 children and showed
a statistically signicant improvement in traits of
ASD on rating scales (Knivsberg, Reichelt,
Hlen, & Ndland, 2002). There was no statistically signicant improvement in cognitive skills
or motor abilities. In another double-blind trial,
15 participants did not have signicant improvement on autism rating scales with use of the
GCFD, although there were reports of improved
behavior from parents while their children were
on the diet (Elder et al., 2006). When these studies were reviewed together, three outcomes were
consistently improved with the diet: overall autistic traits, social isolation, and overall ability to
communicate and interact but several other outcomes either did not differ or could not be combined for comparison (Millward, Ferriter, Calver,
& Connell-Jones, 2008).
The most recent randomized, controlled trial
was a single-blind study of 72 children with ASD
(Whiteley et al., 2010). Half of the study population
was maintained on a GCFD for 12 months, and the
other half continued with their usual diet. For this
portion of the study, there was a statistically signicant improvement with use of the GCFD on
blinded, direct assessments of communication and
repetitive behavior and on parent-rated measures
of social, communicative, stereotypic, and ADHDrelated symptoms. During the second 12 months,
all participants received a GCFD. For the group
that received their usual diet for the rst 12 months
and then the GCFD, the only area of signicant
improvement with dietary intervention was attention and hyperactivity. For the group that received
the GCFD for 24 months, there were improvements from baseline to 24 months in parent-rated
social and communication symptoms. This was
hypothesized to represent a more signicant effect
initially that attenuated over time. No adverse
events or negative side effects were reported for
any of the participants. This study is limited by a
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Nutritional Supplements
Omega-3 Fatty Acids
Fatty acids consist of a carbon chain backbone
with attached hydrogen atoms (typically 1026
carbons in length), a methyl group at one end,
and a carboxylic acid group at the other. Three
fatty acids are attached to glycerol molecules to
make triglycerides, and two are attached to phospholipids with one end hydrophobic and one end
hydrophilic as important components of cell
membranes. Saturated fatty acids have no double
bonds in the carbon chain. Monounsaturated fatty
acids have a single double bond. Polyunsaturated
fatty acids (PUFAs) have several double bonds in
their carbon chains. There are several categories
of PUFAs based on the location of the rst double
bond (omega-3, -5, -6, -7, and -9). The most
widely studied are the omega-3 and omega-6
fatty acids, especially the longer-chain PUFAs
that are between 18 and 22 carbon atoms in
length. Omega-3 PUFAs are synthesized from
the 18-carbon precursor, alpha-linolenic acid;
omega-6 PUFAs are synthesized from the
18-carbon precursor, linoleic acid. Alphalinolenic and linoleic acids are called essential
fatty acids (EFAs) because they cannot be synthesized, but must be ingested (Skeaff & Mann,
2012). Several of the longer-chain fatty acids
may be considered conditionally essential
because they are not efciently synthesized.
These include arachidonic acid (AA), a 20-carbon
omega-6 and docosahexaenoic acid (DHA), a
22-carbon omega-3. Two other important PUFAs
are gamma-linolenic acid (GLA), an 18-carbon
omega-6 and eicosapentaenoic acid (EPA), a
20-carbon omega-3. Enzymes (elongases and
desaturases) using zinc as a cofactor elongate the
shorter carbon chains to make 18, 20, and 22
carbon fatty acids, each of which plays a role in
the formation of neuronal structural components,
cell signaling molecules, or immune modulators.
The omega-6 s are abundantly available in the
10
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250
Research
To date, there has not been research into the role
that omega-3 fatty acids may play in the treatment
of individuals specically with ID. There has
been limited research into the potential benets
of PUFA supplementation for cognitive development in infants and protection from cognitive
decline in the elderly, and in mood, autism
spectrum disorder, learning, and ADHD. There
has been more extensive research into the protective effects of omega-3 PUFAs on cardiovascular
health and in cardiovascular conditions which is
beyond the scope of this chapter (see KrisEtherton et al., 2002).
Infant Development
Maternal stores of DHA during pregnancy and
DHA in breast milk are the main sources of DHA
in infants, which is the predominant structural
fatty acid component of the brain and retina.
Breast milk DHA levels are dependent on maternal intake and infant DHA levels increase with
increasing breast milk levels until a certain point
(Makrides & Gibson, 2000). There are small but
signicant neurodevelopmental advantages at
follow-up in infants who were breastfed versus
those were formula-fed (Simmer, Patole, & Rao,
2011). This neurodevelopmental advantage is
more prominent in preterm infants (see section
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253
Other Nutrients
While inadequate intakes of protein, iodine, and
iron are most well-known for their adverse cognitive effects, subtler deciencies of other nutrients
may have adverse effects as well. In addition, it
has been theorized in some cases that additional
supplementation, in the absence of clinical or
biochemical signs of deciency, may provide
cognitive advantage. In general, literature would
suggest that broad nutritional supplementation
has small, but positive effects on cognition
(Schaevitz, Berger-Sweeney, & Ricceri, 2014),
but this is most consistently found when deciencies are present. One factor that impedes progress
in understanding the role of nutrients is the difculty in measuring deciency in food-secure
societies where deciencies are likely subtle.
Dietary intake does not uniformly reect nutritional status, and serum or red blood cell measurements may not adequately reect brain
levels.
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Research
Several studies have shown a correlation between
cognitive function and serum levels of the B vitamins (Goodwin, Goodwin, & Garry, 1983; La
Rue et al., 1997), including a study that showed
that high serum vitamin B6 concentration correlated with improved performance on memorization tasks (Riggs, Spiro, & Rush, 1996). The
most recent review of the use of vitamin B6 for
cognition included two double-blind, randomized, placebo-controlled trials that had enrolled
over 100 subjects (Malouf & Grimley Evans,
2003). None of the participants had intellectual
disability or other cognitive impairments. The
authors of the review concluded that, based on
the available data, there is no evidence of benet
10
Vitamin B12
Vitamin B12 (cobalamin, methycobalamin) is a
water-soluble vitamin that is required for the
methylation of homocysteine to methionine. The
activated form of methionine is able to transfer
methyl groups to myelin, neurotransmitters, and
membrane phospholipids (Malouf & Areosa
Sastre, 2003), indicating the importance of vitamin B12s role in the functioning of the nervous
system. Vitamin B12 is also required for the conversion of methylmalonyl coenzyme A to succinyl coenzyme A in the Krebs cycle (Rasmussen,
Fernhoff, & Scanlon, 2001).
Humans must obtain vitamin B12 from their
diet, generally from animal protein. The recommended daily requirement is 25 g, although
the average adult (nonvegan and nonvegetarian)
diet provides approximately 530 g per day
(Malouf & Areosa Sastre, 2003). Vitamin B12 is
excreted in bile and reabsorbed in the terminal
ileum with the aid of intrinsic factor, and up to
23 mg can be stored in the human liver (Lauer &
Spector, 2012). Because of this active enterohepatic circulation and liver storage, several years
of a vitamin B12-decient diet may be required
before an individual becomes functionally decient (Rasmussen et al., 2001).
A deciency in vitamin B12 leads to several
negative effects including macrocytic anemia,
leucopenia, thrombocytopenia, and pancytopenia
(Lauer & Spector, 2012). Neurologic effects of
B12 deciency include hypotonia, seizures,
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Research
The impact of vitamin B12 on cognitive function
in elderly patients with Alzheimers disease and/
or cognitive decline has been studied. One randomized, double-blind, placebo-controlled trial
showed that a daily oral dose of 50 g of vitamin
B12 signicantly increased the average serum
levels of vitamin B12 in older individuals with
B12 deciency (Seal, Metz, Flicker, & Melny,
2002). This study did not include individuals
with a history of intestinal malabsorption or
known deciencies of intrinsic factor. There was
no evidence for improved cognition; however,
cognition was not tested in detail, but rather with
a brief mental status test.
Hvas, Juul, Lauritzen, Nexo, and Ellegaard
(2004) examined the effects of vitamin B12 treatment on cognitive function and depression in
patients with known vitamin B12 deciency
(determined by elevated plasma methylmalonic
acid levels). One hundred and forty participants
were randomly assigned to receive either a 1 mg
vitamin B12 injection or a placebo injection
weekly for 4 weeks. There was a higher rate of
cognitive dysfunction and depression symptoms
in this B12-decient population than would be
expected based on rates in the typical agematched population. The patients were assessed
at baseline and 3 months after completion of
treatment. There was no statistically signicant
difference between the treatment and placebo
group in the measurements of patient cognitive
function or depressive symptoms. It was neither
known how long the subjects had been vitamin
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Folate
Folate (B9) is a water-soluble B vitamin that,
along with choline, is important in reactions that
involve single-carbon metabolism. Single-carbon
processes are necessary for the synthesis and
maintenance of integrity of DNA, neurotransmitter synthesis, and methylation of DNA, RNA,
proteins, polysaccharides, and phospholipids.
Methylation of DNA is an epigenetic regulator of
gene transcription. All of these molecules are
involved in the proliferative and synaptic processes that result in cortical development and
plasticity. Abnormal development of the cerebral
cortex and reduced cortical plasticity are hallmarks of developmental disorders that result in
intellectual disability, thus abnormalities in folate
status may play a role (Schaevitz et al., 2014).
Folate deciency, which can occur due to inadequate intake, or individual genetic differences in
folate usage/metabolism (such as methytetrahydrofolate reductase deciency) is best known for
causing megaloblastic anemia and neural tube
defects. As with B12, folate deciency can lead
to an elevated homocysteine level, a risk factor
for vascular disease and dementia. Folate occurs
naturally in several fresh fruits and vegetables,
but is added to foods or provided in most
Research
Although folic acid supplementation, with or
without B12 supplementation, does not appear to
benet the cognitive function of healthy elderly
individuals, the subgroup with high homocysteine levels does benet on some measures of
cognitive functioning (Malouf & Grimley
Evans, 2003).
The role of folate has been studied in fragile X
syndrome, a common and specic genetic cause
of intellectual disability resulting from a greater
than 200 triplet repeat expansion in the FMR1
gene on the X chromosome. The fragile site on
the X chromosome was initially identied when
cells were grown in folate-decient culture
media, leading to the theory that folate supplementation might have a stabilizing inuence on
the DNA of individuals with fragile X syndrome
and, thereby, a positive impact on clinical status.
However, it appears that individuals with fragile
X do not have folate deciency or any evidence
for altered folate metabolism or single-carbon
cycle abnormalities (Schaevitz et al., 2014) and
placebo-controlled studies do not support
improved function in individuals with fragile X
supplemented with various doses of folate (Hall,
2009; Rueda, Ballesteros, Guillen, Tejada, &
Sol, 2011).
Folate and choline supplementation have also
been evaluated in Rett syndrome, Down syndrome, and ASD. Animal models typically indicate that oral supplementation can increase brain
levels of these nutrients, but CSF studies in
humans also indicate that central folate deciency can occur when serum and red blood cell
levels are normal. Cerebral folate deciency
occurs in some, but not the majority, of girls with
Rett syndrome, at least according to research to
date. This does not appear to be related to age or
type of MECP2 mutation, but may be related to
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258
Melatonin
Melatonin is a hormone that is believed to help
regulate the bodys circadian rhythm. It is primarily produced in the pineal gland, which is the
part of the brain connected by the suprachiasmatic nucleus to the retina. Small amounts of
melatonin are also synthesized directly in the
retina and gastrointestinal tract. Melatonin is synthesized from the dietary amino acid, tryptophan,
with the neurotransmitter serotonin as one of the
intermediate steps. Melatonins production is
directly related to perceptions of light and darkness within the environment. When perception of
light is transferred from the retina to the pineal
gland, melatonin is not produced. When perception of darkness is transferred, melatonin is synthesized. Melatonin is almost exclusively
metabolized through the liver, with a small portion excreted in urine (Buscemi et al., 2004;
Shamseer & Vohra, 2009).
Synthetic melatonin is a dietary supplement
that has been used to help initiate sleep in individuals with disturbed sleepwake cycles.
Studies have shown that exogenous melatonin
crosses the bloodbrain barrier and requires
3060 min to initiate sleep onset. Several theories
exist regarding the mechanism by which exogenous melatonin exerts its effects. Exogenous
melatonin may work by decreasing core body
temperature, directly affecting the parts of the
brain involved in sleepwake cycles, and/or by
phase-shifting the endogenous circadian pacemaker. The potential side effect prole of melatonin includes nausea, headache, dizziness, and
fatigue (Buscemi et al., 2004; Hollway & Aman,
2011).
Research
A recent meta-analysis of the efcacy of melatonin included 16 studies in adults and three studies
in children. This meta-analysis found that melatonin caused a statistically signicant, although
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Valerian
Valerian is a herbal supplement composed of
extracts from the roots of perennial plants in the
genus Valeriana. The most common plant used in
Western medicine is Valeriana ofcinalis
(Wheatley, 2005). Other forms that may be used
include Valeriana edulis (Mexican valerian) and
Valeriana wallichii (Indian valerian). The most
common method for preparing the extract is
soaking the dried root and rhizome (the portion
of the stem that is underground) in one of three
possible solutions: water, ethanol and water, or
methanol and water. The relationship between
the type of extraction used and the degree of
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Research
Research
There are currently two studies that address the
efcacy of kava in individuals with insomnia.
One study examined 19 adults who initially
received 120 mg kava per day and who subsequently received 600 mg of daily valerian
(Wheatley, 2001). The results were reported as
statistically signicant improvement in insomnia
with both kava and valerian. Methodological limitations may prevent this conclusion from being
accepted with condence. The other study was an
internet-based, randomized, placebo-controlled
trial of kava and valerian for anxiety and insomnia (Jacobs, Bent, Tice, Blackwell, & Cummings,
2005). In addition to difculty proving that the
study inclusion criteria were reliably met when
one is using an anonymous, Internet-based sample, the results of this study showed that neither
kava nor valerian signicantly improved symptoms of insomnia in comparison to placebo.
There have been no studies to date that specically examine kava as a treatment for insomnia in
individuals with intellectual disability.
Kava
Kava, also sometimes referred to as kava-kava, is
an extract from the plant Piper methysticum. It
has been shown to decrease anxiety and increase
sedation (Singh & Singh, 2002). The mechanism
of action of kava is not fully understood, but it
has been theorized to include blockade of voltagegated sodium ion channels, enhanced binding to
GABA type A receptors, reduced excitatory neurotransmitter release, and potentiation of anxiety-
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tactile,
vestibular,
and
proprioceptive
components, using various items such as hammocks suspended from the ceiling, containers of
textured material, ball bins, ramps, scooter
boards, and various objects on which to spin or
climb.
SI practice is based on a series of treatment
principles: (1) The just right challengeThe
therapist is to create playful activities at a level
that challenges a child to a degree at which they
can have a new experience but still be successful;
(2) The adaptive responseThe child adapts to
the just right challenge using new behavior/strategies thereby advancing development; (3) Active
engagementThe therapist creates enticing,
play-based sensory activities so that the child is
actively engaged to maximize processing and
learning; and (4) Child-directedThe therapist
observes, uses the childs cues, and follows the
childs lead to create these play-based sensory
activities.
Although the theoretical basis of SI therapy
has not changed since Ayers (1972) developed it
in the 1960s and 1970s, SI practice has evolved in
several ways. First, although she developed SI
treatment for children with learning disabilities,
Ayres and others noted the presence of sensory
differences in other populations as well, most
notably children with autism, who have become
the most commonly studied and treated population. Children and adults with intellectual disability or motor delay and children with ADHD
or environmental deprivation are also included in
some studies. Ayers rst developed the practice
of SI therapy based on a battery of tests (the
Southern California Sensory Integration Tests,
the Southern California Post-Rotatory Nystagmus
Test, and the Sensory Integration and Praxis
Tests) (Hoehn & Baumeister, 1994) which
include measures of specic motor and sensory
characteristics, postural reactions, eyehand
coordination, and nystagmus in response to body
movement. The specic pattern of ndings was
used to determine the type of sensory integration
dysfunction, which was linked to specic learning disability types including vestibular and
bimanual integration problems, apraxia, tactile
defensiveness, left hemisphere dysfunction, and
262
Research
The theoretical basis for SI therapy remains
controversial. Although Ayers (1972) original
four general principles are consistent with current understanding of experience-based brain
plasticity, the more specic assumptions that
stem from these principles are not necessarily
supported by evidence. Hoehn and Baumeister
(1994) challenged several of the assumptions on
which SI therapy is based, including validity of
the tests Ayers developed to assess sensory integration and classify learning disabilities, the
meaning and measurement of post-rotatory nystagmus, and the relationship of vestibular function to learning. They concluded that there is
insufcient validity of either the diagnostic procedures or the treatment programs based on SI
theory.
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Research
THR/Hippotherapy in Individuals
with Cerebral Palsy
THR/hippotherapy has most often been studied
in children with cerebral palsy. The rider experiences passive movements in three dimensions
that mimic the pelvic movements required for
walking, gaining experience with the trunk stability, posture, and pelvic mobility required for
ambulation. Thus, there is a sensible rationale for
consideration of this type of therapy for children
with challenges to ambulation. Several reviews
and meta-analyses of THR/hippotherapy (Snider,
Korner-Bitensky, Kammann, Warner, & Saleh,
2007; Sterba, 2007; Tseng, Chen, & Tam, 2013;
Whalen & Case-Smith, 2012; Zadnikar &
Kastrin, 2011) have been completed, and some of
the included studies overlap. When performed at
least weekly over several weeks, this type of therapy can improve muscle tone and activity and
postural control, but may (Snider et al., 2007;
Sterba, 2007; Whalen & Case-Smith 2012) or
may not (Tseng et al., 2013) improve functional
gross motor outcomes, specically ambulation.
When compared with other forms of physiotherapy, it is not consistently superior (Zadnikar &
Kastrin, 2011). When therapy is withdrawn,
gains are likely to be lost (Snider et al., 2007).
Several individual studies provide some detail.
For example, Sterba, Rogers, France, and Vokes
(2002) studied school-aged children with various
distributions of spastic cerebral palsy in a 6-week
pre-riding control period, 18 weeks of 1 h weekly
THR, and 6 weeks after completion. Each child
served as his own control, and assessors were
blinded to the riding condition. The Gross Motor
Function Measure (GMFM) includes 88 items
grouped into ve dimensions: Lying/Rolling,
Sitting, Crawling and Kneeling, Standing, and
Walking/Running/Jumping. No improvement
10
THR/Hippotherapy in Individuals
with Autism
The use of animals in the therapeutic process for
individuals with autism has resulted in studies of
language, social, and adaptive outcomes in addition to the primarily motor outcomes studied in
individuals with cerebral palsy. Most of these
studies are limited by small numbers, single-case
(prepost) design lacking adequate controls, and
inadequate or no blinding of the raters. Outside
therapies typically continue and with little to no
accounting for their variety or intensity. There is
typically little information about the baseline
abilities of the subjects, including intellectual
ability. Thus, though uniformly suggesting positive outcomes, lack of methodological rigor
makes these conclusions tenuous.
An extensive review of the wide range of
animal-assisted interventions for individuals with
ASD resulted in 14 articles in English from peerreviewed journals that included original, empirical data in individuals with autism, Aspergers
disorder, or pervasive developmental disorderNOS of all ages, though the vast majority were
children and adolescents (OHaire, 2013). This
authors overall conclusion was that despite
unanimously positive outcomes (using various
measures of communication and social interaction), methodological weaknesses limited conclusions. She also noted that standardized
outcome measures were rarely used and none of
the measures were used more than once to replicate results across studies.
Some individual studies are notable for their
unique contributions. The focus of a small, single
case (prepost) design pilot study by Ajzenman,
Standeven, and Shurtleff (2013) was on adaptive
behavior and child participation in daily activities
as rated by parents. Due to lack of controls and
blinding, the positive results of parent ratings are
not proof of treatment effectiveness; however, a
prepost motor assessment of pelvic motion
using force plates and video motion analysis provides a unique method of quantitatively evaluating changes in pelvic motion. Kern et al. (2011)
studied the effects of a riding program on autism
severity based on a standardized parent questionnaire obtained by a blinded interviewer. This was
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Research
Breathing increased concentrations of oxygen
increases blood O2 saturation and appears to
improve immediate and delayed word recall, and
measures of attention and vigilance in healthy
young adults (Moss, Scholey, & Wesnes, 1998),
visual-spatial task performance and brain activation by fMRI in young male adults (Chung et al.,
2004), and decreases reaction time, (but not accuracy), on a continuous performance task in children with ADHD (Kim et al., 2012). Oxygen
applied just before, during, or just after the task
appears to enhance memory formation for up to
24 h, but has no effect when applied 10 min
before or after the task or just before or after the
test (Moss & Scholey, 1996; Scholey, Moss, &
Wesnes, 1998). These experiments demonstrate
an effect on memory formation but not retrieval,
and they do not measure whether there is sustained improvement in tested skills.
HBOT has been shown to attenuate acute
damage to the CNS (Nemoto & Betterman, 2007;
Rockswold, Rockswold, Zaun, & Liu, 2013;
Singhal, 2007) and attenuate radiation toxicity
(Kufer, 2012). A prospective, randomized,
phase II clinical trial of prompt, brief treatment
with HBOT alternating with increased inspired
O2 concentration at normal pressures in patients
with TBI resulted in improved markers of oxidative metabolism in areas bordering the injured
area, decreased intracranial hypertension, and
improved morbidity and mortality (Rockswold
et al., 2013). In addition, it may decrease inammation (Rossignol & Rossignol, 2006). In a randomized, prospective, controlled (though not
blinded) trial of late HBOT treatment 636
months after a stroke, clinical improvement in
neurologic function, ADLs, and quality of life
was demonstrated after treatment, but not after a
control wait period. Improvement was correlated
with increased activation on SPECT scans of
brain regions shown at baseline to have intact
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Research
Research in ADHD
Klingberg et al. (2005) studied 53 medicationfree children with ADHD ages 712 who were
randomly assigned to receive either 5 weeks of
progressive computerized working memory
training or a comparison program that did not
increase in difculty as the child progressed. A
visuospatial task was administered at the beginning of training, at the end of training, and 3
months later as the main outcome measure. There
were signicant improvements not only in visual
working memory as measured by the task, but
also in verbal working memory, response
inhibition, and complex reasoning. Gains were
maintained at the 3 month follow-up. A similar
study in children with learning disabilities, many
of whom also had ADHD showed a similar
response in 52 seven to 17-year-olds, half of
whom were wait list controls (Beck, Hanson,
Puffenberger, Benninger, & Benninger, 2010).
The program was equally effective in students on
or not on medication for ADHD, and improvements were sustained at the 4 month follow-up
assessment, but the outcome measures in this
study were parent and teacher ratings of ADHD
symptoms, working memory, planning, organization, and initiating tasks. Parent, but not teacher,
ratings reached signicance, but parents were not
blinded. Several additional studies showed
positive responses in school-aged children, but
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11
Introduction
Cognitive behavior therapy (CBT) was developed
in the 1960s and over the subsequent half century
emerged as the predominant approach to evidenced-based psychological therapy and the treatment of choice for many psychological disorders
(Roth & Fonagy, 2004). The basic assumptions of
CBT are: that peoples emotions and behavior are
inuenced by their perceptions of events (that is,
that thoughts, images, and other cognitive mediating processes affect behavior); that psychological
disorders are characterized by distorted or dysfunctional thinking; and therefore, that mood and
behavior can be improved by working with the
patient to modify thinking in the direction of more
realistic evaluations of events.
Until relatively recently, the psychological
problems of people with intellectual and developmental disabilities (IDD) were treated almost
exclusively by hospitalization, psychopharmacology, and/or behavioral interventions based on
P. Willner (*)
Department of Psychology, College of Human
and Health Sciences, Swansea University,
Swansea SA2 8PP, UK
e-mail: p.willner@swansea.ac.uk
W.R. Lindsay
Danshell Healthcare, 119 Americanmuir Rd.,
Dundee DD3 9AG, Scotland, UK
University of West of Scotland (UWS), UK
283
284
Formulation
Becks basic insight was that people may be subject to habitual cognitive distortions (Table 11.1)
and that the therapists job is to identify the
11
285
Early experiences
Negative/pessimistic parents
Bullying peer group
Dysfunctional assumptions
and
Core beliefs
Self - Im no good
Others - uncaring and cruel
The world - is dangerous and unfair
Being under pressure at work
Consequences
Told off by boss for being rude.
Aggression
Fig. 11.1 An example of a CBT formulation of challenging behavior, illustrating the early development of a depressive
schema and the interplay of negative automatic thoughts, emotions, and consequences following a critical incident
286
11
Back to Basics
While the CBT toolkit is of proven importance, it
is also important to distinguish between the toolkit and the therapeutic principle underlying CBT:
that psychological distress can be decreased
by counteracting dysfunctional cognitions. This
objective can sometimes be achieved much more
simply than by deploying the full CBT toolkit.
For example, Willner (2006) described two cases
where signicant therapeutic improvements were
achieved in people with IDD simply by correcting false beliefs (e.g., that breathing the air in a
toilet causes illness). Imagery Rehearsal Therapy
(IRT) is a simple approach to cognitive change
that has been used to deal with recurrent nightmares associated with post-traumatic stress disorder (PTSD), by helping the client to change the
nightmare story to a version that has a more
acceptable ending, and then to rehearse the new
story before going to sleep. The benet of this
approach has been demonstrated in a controlled
trial in the general population (Krakow et al.,
2001), and there are ve case studies reporting
impressive effects in people with IDD (Bradshaw,
287
288
Table 11.2 Cognitive decits that can cause difculty in CBT if not addressed
Cognitive domains
Intellect
Emotional literacy
Memory
Executive functioning
Specic processes
Verbal understanding
and reasoning
Nonverbal understanding
and reasoning
Emotional vocabulary
CBT skills
Assimilation
Recall of experiences
Prospective memory
Working memory
Behavioral inhibition
Initiative
11
289
290
11
Setting an Agenda
Although setting an agenda for sessions is generally considered to be a CBT technique, it is a
method that can be helpful for any form of psychotherapy, by enabling a relatively complex
process to become more predictable and controlled. However, once established, the agenda
may become be repetitive, and simply be assumed
in later sessions. In the study of Jahoda et al.
(2009) that analyzed the process of CBT process
for people with IDD, setting the agenda was the
method to which therapists adhered least frequently. The same was true of an analysis of
group-based CBT delivered by care staff (Jahoda
et al., 2013). A typical agenda might include the
following elements: monitor current emotional
state; review of the past week; review of homework; analysis of one particular incident: cognition, behavior, emotion, and arousal; review
implications for future and other settings; exercises or psycho-education; and setting homework
tasks.
291
292
11
293
294
11
Homework
Homework is an integral part of CBT and is usually set at the end of each session. Homework can
be difcult for people with IDD, and tasks should
be kept as simple and clear as possible. Tasks
can range from a piece of behavioral rehearsal,
through interaction with others, to rehearsal of
thoughts and attitudes considered during the
treatment session. A functional analysis of a
therapy-relevant event occurring between sessions, in which clients identify the antecedent
circumstances, describe the event and reect on
their consequent thoughts, feelings and behavior
can be a particularly fruitful exercise (Willner
et al., 2013a, 2013b). The important point about
homework is that it should have been discussed
or practiced during the session in order to help
the client develop some skills for use in the reallife setting. Behavioral rehearsal might be to
approach an individual with whom the person
has had difculty in the past and engage in a
piece of interaction that has been practiced during
role-play sessions.
Clients should be encouraged to think about
homework tasks between sessions as part of
treatment rather than an optional task or a burden. However, therapists should be careful to
ensure that clients are not made to feel guilty for
not completing homework tasks because people
with IDD may nd it difcult to remember
the homework or to consider it during critical
295
296
11
297
298
Anger
The literature in this area includes two types of
intervention: anger management and anger treatment. A literature search identied 11 studies of
anger management and three studies of anger
treatment, which are summarized in Table 11.3.
Nine of these 14 studies were included in the
Vereenooghe and Langdon (2013) meta-analysis.
The anger treatment studies were all conducted by the same group and include partially
overlapping populations of participants (Taylor,
Novaco, Gillmer, Robertson, & Thorne, 2005;
Taylor, Novaco, Gillmer, & Thorne, 2002, 2004;
Taylor, Novaco, Guinan, & Street, 2004). All
used a standard 18-session individual-treatment
format. These studies differ from the anger management studies in that they were conducted in
forensic, rather than community, settings, and
included an equal mix of participants with mild
(IQ < 70) and borderline (IQ 7079) IDD. They
followed essentially the program described in
detail in the previous section of this chapter.
Five of the 11 anger management trials were
led by the same investigator. Rose, West, and
Clifford (2000) and Rose (2010) administered an
anger management program modelled closely on
the intervention devised by Benson, Rice, and
Miranti (1986), involving either a 16-week program of 2-h sessions delivered in a group format
(Rose, 2010; Rose et al., 2000, 2005; Rose,
OBrien, & Rose, 2009), or 1418 individual
3060 min sessions (Rose et al., 2009; Rose,
Dodd, & Rose, 2008, 2009). These interventions
were delivered by qualied clinical psychologists
or experienced assistant psychologists. Willner
et al. (2002, 2005) delivered a group-based intervention that was adapted from the same session
11
299
Rose et al.
Willner et al.
Lindsay et al.
Willner et al.
Rose et al.
Hagiliassis et al.
Rose et al.
Rose et al.
Rose
Collado-Castilloc
Willner et al.
Date
2002
2004
2005
2000
2002
2004
2005
2005
2005
2008
2009
Na
20
17
36
25
16
47
17
86
29
41
64
2010
2010
2013a,
2013b
56
36
179
Format
Individual
Individual
Individual
Group
Group
Group
Group
Group
Group
Individual
Group
Individual
Group
Group
Group
Sessions (h)
18 1
18 1
18 1
16 2
92
40 1
12 2
16 2
12 2
16 b
16 2
16 b
16 2
??
12 2
Duration (h)
18
18
18
32
18
40
24
32
24
12
32
12
32
??
24
Rater
Self
Self
Self/carer
Self
Self/carer
Self/carer
Self/carer
Self
Self
Self
Self
Follow-up
None
None
4m
12 m
3m
330 m
6m
36 m
4m
None
None
Carer
Self
Self/carer
None
None
6m
a
The numbers listed are the total number of participants in the study; they may not have been equally distributed
between conditions
b
Participants in the study by Rose et al. (2008, 2009) received 1418 sessions of 3060 min duration. The gures in the
table provide a rough average
c
The study by Collado-Castillo (2010) was published in abstract only; few details are available
300
Format
Rater
Group
Group
Group
Individual
Group
Individual
Group
2005
2005
2005
2008
2009
2010
Willner et al.
Rose et al.
Hagiliassis et al.
Rose et al.
Rose et al.
Rose
Self
Carer
Carer
Self
Self
Self
Self
Self
Carer
Self
Staff
2004
Individual
Self
Taylor et al.
2005
Individual
Self
Taylor et al.
Self
Self
Staff
Group or individual anger management in community settings
2000
Group
Self
Rose et al.
2002
Group
Self
Willner et al.
Carer
2004
Group
Self
Lindsay et al.
Study
Individual anger treatment in forensic settings
2002
Individual
Taylor et al.
Date
108.3
109.0
107.8
93.7
92.5
106.8
79.4
102.5
116.4
102.2
100.0
94.2
111.6
119.5
91.8
103.0
101.4
104.2
104.2
104.2
102.4
AI
AI/PI
AI/PI
DPI
diary
PI
PI
PACS
AI
NASe
AI
AI
AI
AI
Control
Mean
PI
WARS
IPT
NAS
PI
STAXI
WARS
Instrumentb
Table 11.4 Outcomes of controlled studies of anger interventions for people with intellectual disabilitiesa
10.4
17.2
15.6
31.0
12.0
32.2
40.6
38.4
12.7
23.6
14.3
10.0
10.0
9.5
17.8
84.6
13.1
13.4
21.3
26.2
75.5
SD
88.5
86.3
83.7
69.5
43.9
86.7
55.8
219.8
90.3
120.5
86.7
88.0
85.4
90.3
77.4
63.8
67.5
91.7
84.7
85.7
59.1
Intervention
Mean
11.8
28.8
15.9
40.6
23.9
40.7
23.8
52.8
11.7
26.3
14.9
11.4
14.0
14.9
19.8
49.3
23.2
12.2
21.8
33.3
50.8
SD
(continued)
1.27***
1.31**
1.17*
0.89*
2.84***
0.68
1.82***
2.33***
1.06***
0.77**
1.20***
1.52***
1.57**
0.99**
1.61**
0.61
2.24**
0.15*
0.34
0.71
0.29
Effect sizec,d
11
Cognitive Behavioral Therapy
301
Format
Date
Control
Mean
PACS
Home carer
117.1
117.9
PACS
Key-worker
Self
MOAS
74.8
ABC-H
118.6
ABC-I
100.0
MOAS
89.4
Use of anger coping skills
PACS
99.0
Key-worker
Home carer
Home carer
Home carer
118.3
ABC-I
Anger disposition
PI
108.4
PACS-IPT
107.7
PI
114.9
PI
114.5
Challenging behavior
ABC-H
125.7
Instrumentb
Key-worker
Key-worker
Self
Self
Key-worker
Home carer
Rater
83.6
84.1
81.4
109.0
118.0
77.4
104.0
102.0
101.0
33.6
34.2
60.1
54.2
SD
251.0
179.9
147.5
67.6
78.8
68.9
58.4
68.2
69.9
96.5
84.5
96.0
104.0
Intervention
Mean
190.6
136.6
97.3
100.0
82.2
80.7
122.8
70.9
68.1
67.7
44.1
63.2
48.3
SD
0.51
(0.51)***
0.53
(0.53)***
0.50 (0.18)
0.67
(0.45)***
0.60
(0.37)***
0.15 (0.11)
0.41 (0.32)*
0.41 (0.22)
0.28 (0.11)
0.24 (0.20)
0.60**
0.31 (0.27)*
0.20 (0.13)
Effect sizec,d
In order to present data on a standardized scale across studies and measures, all data are reported as percentage of the pre-treatment mean. Where the relevant data were missing
from the published paper, they were requested from the author. For studies that employed more than one anger-related outcome measure and more than one rater, outcomes are
listed for all measures and all raters
b
ABC aberrant behavior checklist (H hyperactivity scale, I irritability scale); AI anger inventory, DPI Dundee Provocation Inventory, IPT imaginal provocation test, MOAS
Modied Overt Anger Scale, NAS Novaco Anger Scale PACS: Prole of Anger Coping Skills (an increase on this scale indicates better coping); PI provocation inventory, STAXI
State-Trait Anger Expression Inventory, WARS ward anger rating scale. See the actual studies for further details
c
Effect sizes were estimated by Cohens d (Cohen, 1988), calculated as the difference of intervention and control group raw scores post-treatment, divided by the mean of the
two standard deviations. Conventionally, small > 0.2; medium > 0.5; large > 0.8. **p < 0.01; *p < 0.05 for the difference between intervention and control groups
d
Differences in baseline scores were generally very small but in one case (Willner et al., 2005: carer ratings) intervention group scores were 25 % lower than control group scores
at baseline. In order to correct for this difference, pre-treatment means were subtracted from post-treatment means before calculating d. Because a standardized methodology has
been applied to all studies, reported effect sizes are not always identical to published values. For the study of Willner et al. (2013a, 2013b) the gures in parentheses are the
published effect sizes, which were calculated using a regression model with baseline scores as a covariate
e
In this study, an increased score on the NAS corresponds to a decrease in anger
Study
Willner et al.
302
P. Willner and W.R. Lindsay
11
303
Depression
Two small controlled trials in depression (McCabe,
McGillivray, & Newton, 2006; McGillivray,
McCabe, & Kershaw, 2008) have reported that,
in people with relatively mild (but clinical) levels
of depression, a brief group-based intervention
caused signicant decreases in both depression
scores and the occurrence of negative automatic
thoughts, conrming that the intervention engendered cognitive change (in addition to clinical
improvement). Interestingly, in terms of the
change in depression scores, the intervention was
as effective when delivered by support staff using
a treatment manual (McGillivray et al., 2008) as
when delivered by trained therapists (McCabe
et al., 2006), albeit that the staff-delivered intervention was longer than the therapist-delivered
intervention (12 vs. 5 2-h sessions, respectively)
and produced a substantially larger effect size
(because within-group variability was smaller).
In both studies, the changes were maintained at
3-month follow-up.
A more recent small, randomized controlled
trial did not support these ndings. Hassiotis
et al. (2013) found no signicant effect of a
304
Practice Recommendations
We conclude with some practice recommendations
that ow from the literature we have reviewed, and
from clinical experience of working with people
with IDD within a CBT framework.
Screening
We recommend against the use of psychometric
tests when deciding how to proceed with a newly
referred client. While psychometrics are of
undoubted value in helping to understand a clients intellectual limitations they cannot support
the conclusion that an individual client would be
unable to engage with a CBT-based intervention.
Indeed, striking clinical outcomes are possible
11
Motivation
In outpatient work with the general population,
the therapist is unlikely to consider whether or not
the patient is motivated, even to attend sessions.
305
306
Engagement
When conducting psychological treatment with
members of the general public it is assumed that
clients will understand the requirements and processes of treatment. Where there might be some
difculties in the technical aspects of treatment,
it is again assumed that clients will have the
capacity to understand explanations of procedures. For clients attending outpatient clinics in
mainstream services there is little doubt of their
capacity to engage with the process. Such an
assumption cannot be the case in CBT for people
with IDD. The most important aspect of any
psychological treatment is that the patient
understands what we (the therapists) are trying to
do. Given that all of our clients have de facto
limitations in cognitive functioning this will give
rise to corresponding limitations in communication. Put simply, if the client is not clear about the
requirements and processes of treatment, it is
unlikely to lead to a successful outcome.
We have already explained some procedures
that therapists can undertake when adapting
treatment for the better engagement of clients.
It should be emphasized that this is not a simple
process because ensuring engagement should
not diminish the various components of CBT.
Therapists who are accustomed to treatment with
intellectually able clients may be at a loss as to
how to explain the procedures in a straightforward fashion with no use of technical terms and
jargon. This will often require preparation and
planning on the part of the therapist, who needs
to ask How will I explain the term negative self
statements? What term will I use for schema?
How will I am sure that the client understands
me? and so on.
Clients with IDD have spent a lifetime in a
linguistic world that is relatively complex, and
11
Conclusion
An important therapeutic skill in CBT for people
with IDD is to ensure engagement while adhering to the procedures and principles of CBT. We
have provided a number of illustrations of how
each phase of CBT can be adapted to enable the
therapist to incorporate the stages of treatment in
a way that is meaningful for the client. It is all too
easy to stray from the normal processes when
attempting to ensure engagement. The therapist
should attend to each phase of treatment in an
orderly fashion with regular reference to a CBT
manual and clinical supervision.
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12
Mindfulness
Yoon-Suk Hwang and Nirbhay N. Singh
Introduction
People with intellectual and developmental
disabilities (IDDs) are at increased risk of
health problems (Cooper, Smiley, Morrison,
Williamson, & Allan, 2007; Dykens, 2000;
Emerson, 2007). Children and young people with
IDDs are over seven times more likely to have a
diagnosed psychiatric disorder than their peers
without IDDs (Emerson, 2003) and are more
likely to receive mental health treatment for more
severe mental health disorders, such as psychosis
and personality disorders (Howlett, Florio, Xu, &
Trollor, 2015). Adults with IDDs are also exposed
to elevated risks of mental ill-health, along with
problem behavior (Cooper et al., 2007). Problem
behavior occurs in about 10 % of individuals
with IDDs (Lowe et al., 2007), and this places
signicant hardship on caregivers (Beer, Ward, &
Moar, 2013; Hastings & Brown, 2002). Problem
behavior is also a major contributor to the over-
311
312
discuss why and how mindfulness-based interventions have been used for individuals with
IDDs. We review mindfulness studies involving
individuals with IDDs according to their intervention and research design and their methods.
Finally, we present recommendations to
strengthen the applications of mindfulness as an
evidence-based practice.
What Is Mindfulness?
Mindfulness within Its Contemporary
Context
Mindfulness meditation is a form of attention and
awareness training. It has been used in the elds
of health and social science as an evidence-based
practice, where it has demonstrated positive
changes in mental and physical well-being. These
changes include stress reduction (Baer, Carmody,
& Hunsinger, 2012), anxiety reduction (KabatZinn et al., 1992), depression relapse prevention
(Deyo, Wilson, Ong, & Koopman, 2009; Segal,
Williams, & Teasdale, 2002), and increased psychological well-being (Carmody & Baer, 2008).
The clinical application of mindfulness began in
the late 1970s with the Mindfulness-Based Stress
Reduction (MBSR) program for people with
chronic health problems (Kabat-Zinn, 1980).
Initially, Kabat-Zinn (2011) presented the meditation practice in MBSR to a medical audience
using the concept of attention self-regulation. He
subsequently introduced the term mindfulness
to describe his approach to meditation practice,
which he located in the teachings of the Buddha
as practiced in both the Theravada and Mahayana
traditions, as well as within Yogic traditions.
Considering his visionary contribution to
incorporating Eastern meditation practices into
modern health science, it is not surprising that the
most frequently cited denition of mindfulness
comes from Kabat-Zinn (2003, p. 145), where he
described it as the awareness that emerges
through paying attention on purpose, in the present moment, and nonjudgmentally to the unfolding of experience moment by moment. This was
presented as an operational, as opposed to a theo-
12 Mindfulness
313
314
12 Mindfulness
(Howlett et al., 2015). The analysis of a community mental health service data set over a 6-year
period showed that children and adolescents with
IDDs were more likely to receive ambulatory
mental health treatment for more severe mental
health disorders, such as psychosis and personality disorders. They were more than twice as likely
to have an unknown diagnosis than their peers
without IDDs. Service use prole also showed
that individuals with IDDs had 1.6 times more
face-to-face contacts and 2.5 times longer faceto-face contact time than their counterparts without IDDs. These results together clearly indicate
that people with IDDs have not only more
frequent but also more complex service needs in
comparison to those without IDDs.
Adults with IDDs are signicantly overrepresented in the criminal justice systems (Hayes,
Shackell, Mottram, & Lancaster, 2007; Sndenaa,
Rasmussen, Palmstierna, & Nttestad, 2008) and
mental ill-health and unmet health needs are also
of major concerns for them. A cross-sectional
study conducted between 2008 and 2010 with a
sample of 1279 adult prisoners suggested that
almost one in ten adult prisoners (i.e., 9 %) had
IDDs and, of these, more than half had a lifetime
mental disorder (Dias, Ware, Kinner, & Lennox,
2013). Prisoners with IDDs and coexisting mental health issues are also more likely to reoffend
than those with IDDs alone. They are also signicantly more likely to have a current diagnosis of
depression and to use antipsychotic medication
than their peers without IDDs.
Psychiatric disorders in individuals with IDDs
often include problem behaviors. Problem behaviors, in fact, were identied as the most prevalent
type of mental ill-health problem among adults
with IDDs (Cooper et al., 2007). Holden and
Gitlesen (2009) raised a concern about explaining problem behaviors mainly by a way of psychiatric symptomatology. They noted that this
approach could potentially oversimplify the complex and dynamic relationships between psychiatric symptomatology and problem behaviors.
Problem behaviors might be an atypical presentation of underlying psychiatric symptoms, or they
might be a secondary feature of psychiatric
symptoms. Examination of different approaches
315
316
12 Mindfulness
317
318
developed to support people with borderline personality disorder to manage their overwhelmingly
negative and intense emotions. Mindfulness was
one of four key skill sets, along with distress tolerance, emotion regulation, and interpersonal effectiveness (Linehan, 1993). Mindfulness in DBT is
seen as comprising what skills (i.e., observing,
describing, participating) and how skills (i.e.,
taking a nonjudgmental stance, focusing on one
thing in the moment, being effective). These categories describe what needs to be cultivated to
practice mindfulness and how it can be done.
Sakdalan, Shaw, and Collier (2010) provided
a modied DBT Coping Skills training program
for 13 weeks (1.5 h) to six forensic clients with
IDDs. They used simple language, concrete
examples and visual aids, and reported decreased
risks of reoffending as a training effect. Each session began with a mindfulness exercise. However,
it is difcult to distinguish how much the positive
results of the program can be accounted for by
mindfulness practice as such. The same difculty
applies to other studies using psychotherapy programs that incorporate mindfulness as one of a
number of core skill sets, such as ACT.
The theoretical framework of ACT comes
from relational frame theory (RFT), a psychological theory of human language within which
human suffering is viewed as emerging from
the way the human mind relies upon language
and concept for its sense of reality (Hayes,
Strosahl, & Wilson, 2012). ACT aims to increase
psychological exibility through working on
six core processes: defusion, acceptance, exible attention to the present moment, self-ascontext, values, and committed action (Harris,
2009). Of particular importance to ACT are the
cultivation of exible attention to the present
moment and a sense of self-as-context. These
constitute not only acceptance and mindfulness
processes but also commitment and behavioral
activation processes, these being the two wings
of ACT practice that lead to the promotion of
psychological health. Flexible attention to the
present moment requires attending to what is
present in a focused, voluntary, and exible
fashion (Hayes et al., 2012, p. 78), and self-ascontext denotes an understanding that ones
12 Mindfulness
319
320
by practitioners and their family members, indicate the effects of loosening automaticity. Within
these psychological environments, care recipients may demonstrate more signs of physical
happiness or less aggressive behavior.
A bidirectional relationship between stress in
caregivers and the problem behaviors of individuals with IDDs may provide another possible
explanation for the interconnectivity between
caregivers and care recipients in the context of
mindfulness practice. Problem behaviors contribute to generating stress and burnout in caregivers
(Hastings & Brown, 2002) and adversely affecting relationships between caregivers and care
recipients. This, in turn, increases the likelihood
of problem behaviors (Hastings, 2005). Children
with IDDs are more likely to have family environments with high levels of stress (Emerson, 2003),
and caregivers identify management of the problem behavior of children with IDDs as a major
area in which they need to be supported (James,
2013). A recent longitudinal study (Neece, Green,
& Baker, 2012) examined the relationship
between parenting/caring stress and child problem behavior with a sample of 237 children aged
under 10 years, both typically developing children (144) and children with DD (93). Analysis of
data collected at seven time points indicated that
for both groups of children, heightened parenting
stress is an environmental risk factor leading to
increases in child problem behaviors over time,
and elevated child problem behaviors lead to
increases in parenting stress over time.
According to the results of mindfulness intervention studies that examined both direct and indirect
training effects (Neece, 2014; Singh 2007b) reductions in parenting stress and reductions in child
problem behavior occurred concurrently, from
which a close relationship can be inferred. It is possible that mindfulness practice supported caregivers
to notice and lessen the grip of automaticity in their
interpersonal interactions and this may have created
environments leading to reductions in child problem
behaviors over time. A deepened understanding of
the nature of this interconnectivity is yet to be developed, and this may be achieved through applications
of different research methods, such as qualitative
approaches (Hwang & Kearney, 2013, 2014).
12 Mindfulness
Mindfulness-Based Interventions
in IDDs
We reviewed 17 studies that investigated the
effects of training people with IDDs in
mindfulness-based interventions. The summaries
of intervention design and methods and research
design and methods are presented in Table 12.1.
Participants
A total of 178 people (95 males and 63 females)
with IDDs. participated in mindfulness training.
Reecting the pressing issues (i.e., mental health
and overrepresentation in the criminal systems)
that IDDs communities have faced, 82 of 178
participants had some sort of mental illness (e.g.,
psychotic disorder, bipolar disorder, and personality disorder) and 30 participants received forensic mental health care. The majority of
participants presented with mild IDDs. Of the
178 individuals, 131 were classied as having
mild IDDs (e.g., Singh et al., 2003, 2013a), seven
as moderate IDDs (e.g., Singh et al., 2007a), six
as mild to moderate IDDs (Chilvers et al., 2011),
and one as moderate to severe IDDs (Brown &
Hooper, 2009). The severity of IDDs for nine
participants was not specied (e.g., Singh et al.
2008b) and the remaining 24 presented with a
mean IQ score of 70.7 (e.g., Miodrag et al.,
2013). The chronological age (CA) of the participants ranged between 16 and 61 years with a
mean CA of 28.62 years. Our review of studies
suggested that only four of the 178 participants
were teenagers, aged between 16 and 18 years. In
other words, mindfulness interventions were predominantly provided to address the difculties of
adults with IDDs rather than children or adolescents with IDDs.
Intervention Objectives
A number of studies (e.g., Howlett et al., 2015;
Torr et al., 2008) reported that people with IDDs
were at increased risk of behavioral, mental, and
physical health problems. Mindfulness interven-
321
Intervention Content
Intervention content was organized according to
the intervention objectives. Reduction in aggressive behavior was the most frequent objective.
Meditation on SoF was most frequently used to
achieve this intervention objective. Singh et al.
(2003) developed ten training steps for the
Meditation on SoF (Table 12.2) and applied this
mindfulness procedure to reduce the uncontrolled
aggressive behavior of a male adult with dual disability, mild IDDs, and psychotic disorder. The
application of Meditation on SoF as a self-management skill was successful. Meditation on SoF
was used to reduce physical and verbal aggression in ve follow-up studies, either as a sole
component of the mindfulness intervention
(Adkins et al., 2010; Singh et al., 2007a, 2008b,
2011c) or along with breathing meditation (Singh
et al., 2013a).
Two studies (Chilvers et al., 2011; Lew et al.,
2006) also aimed to enhance the behavioral wellbeing of individuals with IDDs. Both studies used
DBT within which mindfulness was a core skill.
2. Singh et al.
(2007a)
Study
1. Singh et al.
(2003)
Participants and
settings
27-year-old male
with mild ID and
psychotic disorder
Psychiatric hospital
Reduce
aggressive
behavior to
maintain
community
placement
Objective
Aggressive
behavior
Meditation on SoF
Content
Meditation on SoF
Table 12.1 Mindfulness interventions for individuals with DD addressing their problem behaviors
No modication of the
content or training
strategies
First author
Multiple-baseline design
Baseline: 3, 5, and 10
week
Practice: 35 week
Follow-up: 2 years
Interrater reliability
(95 %)
No validity and delity
measure
Research design
Single-subject research
Baseline: 5 months
Practice: 12 months
Follow-up: 12 months
Overall reliability
(96.5 %)
No validity and delity
measure
Results
Major decreases in
1. Incidents of
aggression
3. Use of physical
restraints
4. Staff and resident
injuries
5. PRN medication
Increases in
2. Self-control
6. Physically/socially
integrated
community activities
Drug therapy discontinued
Psychotic disorder NOS
withdrawn
Community placement
Declined aggressive acts
Community placement
maintained
5. Chilvers,
Thomas, and
Stanbury
(2011)
4. Adkins
et al. (2010)
Study
3. Singh et al.
(2008b)
Participants and
settings
6 aggressive male
adult offenders (CA,
25, 28, 34, 23, 25,
and 36 years) with
ID and mental
illness (e.g., bipolar,
impulse control
disorder, pedophilia
and paraphilia)
Forensic mental
health facility
3 adults (CA, 42,
25, and 22 years)
(gender, 2 males
and 1 female) with
mild ID and mental
illness (e.g.,
obsessive
compulsive disorder
and depression)
Two in group home
and one at home
15 females (CA
1847) with mild to
moderate ID in a
forensic medium
secure psychiatric
ward
8 with no
psychiatric
diagnosis, 2
psychosis, 4 mood
disorders, and 2
ASDs
Ward
Content
Meditation on SoF
Meditation on SoF
Mindfulness activities
as part of DBT:
Participation (fully
engrossed in an
activity)
Observation (attend
to the observation
target)
Description
(providing a
factual
description)
Focus on one thing
in the present,
nonjudgmental,
and doing what
works
Objective
Reduce
aggressive
behavior for
transition to
community
placement
Reduce
verbal and
physical
aggression
Reduce
aggressive
incidents
Group exercise
Individual feedback
Awareness training to all
nursing staff
Intervention; 5 months
(30-minute group sessions
twice weekly)
No modication of the
content or training
strategies
Community-based
therapist (no further
information)
Multiple-baseline design
across participants
Baseline: 24 week
Intervention: 25 week
Self-practice: 1226
week
Follow-up: 48 week
No validity, reliability,
and delity measure
Research design
Multiple-baseline design
across participants
Baseline: 3, 5, and 7
week
Practice: 27 week
Interrater reliability
(92 %)
No validity and delity
measure
(continued)
Overall decrease in
observed aggression,
physical interventions,
and seclusions with
uctuations after an initial
reduction
Maladaptive behaviors
reduced to near-zero
levels
Improved collateral
measures
Community placement
maintained
Results
Physical aggressive
behaviors decreased to
zero across the 27 months
of training
Lower verbal aggression
No requested medication
or restraint
No staff or peer injuries
8. Singh et al.
(2013a)
7. Singh et al.,
(2011c)
Study
6. Lew, Matta,
Tripp-Tebo,
and Watts
(2006)
34 individuals
(mean CA
23.4 years for
training group and
23.1 years for
wait-list group, 27
males and 7
females) with mild
ID
27 individuals were
on psychotropic
medication
Settings not stated
Participants and
settings
8 females (CA
2561) dually
diagnosed with mild
(7) and moderate (1)
ID and psychiatric
disorder (e.g.,
personality
disorders)
Ofce, homes, or
other convenient
locations
3 male adults (CA,
28, 28, and
32 years) with mild
ID who were friends
of the trainer
Workplace
Reduce
physical and
verbal
aggression
Reduce
aggressive
behavior and
control anger
Objective
Reduce risk
behavior
Introduction to the
anger management
program
Focused attention on
arousal states
Breathing meditation
Meditation on SoF
Content
1. Mindfulness
activities as part of
DBT:
Mindfulness (e.g.,
breathing)
Observe and describe
common objects
2. Distress tolerance
3. Emotion regulation
4. Interpersonal
effectiveness
Meditation on SoF
No modication of the
content or training
strategies
A 33-year-old man with
mild ID and mental illness
(the participant of the
study conducted by Singh
et al., 2003)
Group experimental: a
wait-list control study
Baseline: 12 week
Intervention: 12 week
Follow-up: 12 week
Interrater reliability
(97 %)
Fidelity 89 %100 %
(mean = 96 %) across
the parents and support
staff individual dyads
Multiple-baseline design
across participants
Baseline: 821 week
Intervention: 5239
week
Follow-up: for 2 years
Interrater reliability
(100 %)
No validity and delity
measure
Research design
Group design without
control group
Data collection points:
Baseline
6 months
12 months
18 months
No validity, reliability,
and delity measure
Declined incidents of
anger and aggression
during the overall practice
period
No incidents of anger and
aggression during the last
4 week of the practice
period
Occasional instances of
anger but no instances of
aggression during the
informal follow-up period
A signicant reduction in
physical and verbal
aggression at post-training
Further reductions in both
physical and verbal
aggression at follow-up
Results
Gradual reduction with
uctuated results:
Increase of risk
behavior at 6 months
of treatment
Decrease of risk
behavior at 12 and
18 months
Lose weight
Cease
smoking
A 31-year-old male
heavy smoker with
mild ID
Settings not stated
11. Singh
et al. (2011b)
Objective
Control
deviant
sexual
arousal
A 17-year-old male
adolescent with
PraderWilli
syndrome and mild
ID
Home
Participants and
settings
3 male adults (CA,
34, 23, and
25 years) offenders
with ID and mental
illness (e.g.,
pedophilia and
sexual abuse of
child)
Forensic mental
health facility
10. Singh
et al. (2008a)
Study
9. Singh et al.
(2011c)
1. Intention
2. Mindful Observation
of Thoughts
3. Meditation on SoF
1. Mindful eating
2. Visualizing and
labeling hunger
3. Meditation on SoF
Content
1. Meditation on SoF
2. Mindful Observation
of Thoughts
Individualized language,
idiom, and explanation of
practice
Therapist (extensive
meditation experience and
clinical experience)
No modication of the
content or training
strategies
The participants mother
assisted by the senior
author via e-mail
Research design
Multiple-baseline design
across participants
1. 4 sessions (0.51 h)
for 4 week
2. 4 individual
meetings for the
remaining
intervention period
3. Intervention (SoF):
13 week
4. Intervention
(observation of
thoughts): 3540
week
No validity, reliability,
and delity measure
Single-subject research:
ABCD design
A: baseline (12 months)
B: intervention exercise
only (12 months)
C: intervention exercise
and food awareness (12
months)
D: intervention exercise,
food awareness, and
mindfulness (24 months)
Follow-up: every 3
months for 3 years
No validity, reliability,
and delity measure
Single-subject design:
changing criterion design
Pre-baseline: 3 months
Baseline: 14 days
Intervention: 82 days
Maintenance: 12 months
Follow-up: 3 years
Interrater reliability
(100 %)
SoF training manual
was used for delity
with consideration of
individualization
(continued)
Mean weight
A: 256.3 lb B: 249.8 lb C:
242.8 lb D: 200 lb
Follow-up 197.8 lb in year
1 192.3 lb in year 2
190.7 lb in year 3
Results
Sexual arousal levels
Baseline: max. 12 levels
for all three
SoF phase: 7.77, 7.38, and
6.92, respectively
Observation of thought
phase: 2.95, 3.03, and
1.51, respectively
Helped to be more calm
13. Singh
et al. (2014)
Study
12. Singh
et al. (2013b)
Participants and
settings
3 male adults (CA,
27, 31, and 23
years) with mild ID
Trained in group but
settings not stated
Cease
smoking
Objective
Cease
smoking
1. Concentration
meditation
2. Verbal selfafrmation of intention
to quit smoking
3. Mindful Observation
of Thoughts
4. Meditation on SoF
Content
1. Concentration
meditation
2. Verbal selfafrmation of intention
to quit smoking
3. Mindful Observation
of Thoughts
4. Meditation on SoF
Randomized controlled
group experimental
study
Pre-baseline: 1 month
Baseline: 4 week
Intervention: 36 week
Follow-up: 1 year
Interrater reliability
(96 %)
Fidelity (100 %)
Research design
Multiple-baseline design
across participants:
changing criterion
design
Pre-baseline: 3 months
Baseline: 10 days
Intervention: 111, 165,
and 77 days
Interrater reliability
(9496 %)
SoF training manual
was used for delity
with consideration of
individualization
Statistically signicant
reduction in number of
smoked cigarettes
Results
Number of smoked
cigarettes reduced to 0
within 111, 165, and 77
days
Effects maintained for 3
years
Reduce
anxiety and
obsessive
thoughts
Improve
mental
well-being
and reduce
depression
and anxiety
15 (8 female, 7
male) adults (CA
2144, mean CA
30.75) with ID (4
borderline, 8 mild, 3
moderate) with
psychiatric disorders
(9 anxiety, 4 anxiety
and depression, 2
bipolar)
Trained in two
groups but settings
not stated
16. IdusohanMoizer,
Sawicka,
Dendle, and
Albany
(2015)
Objective
Examine
stress-related
physiological
symptoms in
relation to
mindfulness
practice
1 female adolescent
(CA: 18 years) with
moderate/severe ID
and
neuropsychiatric
disorder
Settings not stated
Participants and
settings
24 (13 males and 11
females) individuals
(mean CA 27.5,
range 1640 years)
with Williams
syndrome (mean IQ
score 70.7, range
4391)
Residential music
camp
15. Brown
and Hooper
(2009)
Study
14. Miodrag
et al. (2013)
Content
Modied MBSR:
Qigong movement
(e.g., arm swings,
radiant breathing)
Deep belly breathing
meditation
Breath awareness
Body scan
Sitting meditation
Loving kindness
Mindfulness in
everyday life (e.g.,
paying attention,
focusing on the breath,
letting go of thoughts)
Body and thought
awareness
Acceptance and
Commitment Therapy
(ACT)
Mindfulness exercises
on the body
Metaphors to
understand and defuse
thoughts
Goal-setting skills
Combination of
MBCT: mindfulness of
the breath, basic yoga
stretches, the raisin
exercise, and diary of
pleasant and
unpleasant events
ACT: metaphors and
analogies
Modied exercises on
self-compassion
Meditation on SoF
Powerpoint slides of
pictures illustrating the key
points
Meditation CD
Emphasis on repetition and
mastery
Weekly 1.5 hour
intervention session for
nine week
Individual training
Prompts
A single-case study
Intervention: 6 months
Follow-up: 4 months
No validity, reliability,
and delity measure
Research design
Pre-post group design
Intervention: 5 days for
20 min
Fidelity consideration:
using scripts and
following standard
exercises from MBSR
(continued)
Less avoidant of
cognitions, emotions, and
motives (AAQ9)
Calmer, less affected by
thinking, more socially
condent, and better
empathy (parental reports)
Results
Each day cortisol and
self-reported anxiety
levels decreased after
mindfulness sessions
Salivary cortisol and
alpha-amylase (sAA) in
session 4 and 5 were
lower than that of session
1 and 2
Greater self-reported
attention problems
predicted lower sAA
levels
Study
17. Sakdalan
et al. (2010)
Participants and
settings
6 forensic clients (5
males and 1 female,
mean CA 26.18)
with mild to
moderate ID (mean
IQ 57.17)
Settings not stated
Objective
Examine the
effects of
DBT Coping
Skills training
(combination
of adapted
DBT training
and Coping
Skills
training) for
people with
ID
Content
DBT Coping Skills
training
1. Orientation and
group rules
2. Mindfulness
3. Distress tolerance
4. Emotional
regulation
5. Interpersonal
effectiveness
6. Closing
Research design
Pre-post group design
Intervention: 13 week
(sessions for 1.5 h)
No validity, reliability,
and delity measure
Results
A decrease in the level of
risks and increase in
relative strengths (based
on Short-Term
Assessment of Risk and
Treatability)
Increase in global
functioning (based on
Health of the Nation
Outcome Scales for
people with learning
disabilities)
12 Mindfulness
Table 12.2 Steps of Meditation on SoF training
1. If you are standing, stand in a natural rather than
an aggressive posture, with the soles of your feet
at on the oor
2. If you are sitting, sit comfortably with the soles of
your feel at on the oor
3. Breath naturally, and do nothing
4. Cast you mind back to an incident that made your
very angry. Stay with the anger
5. You are feeling angry, and angry thoughts are
owing through your mind. Let them ow naturally,
without restriction. Stay with the anger. Your body
may show signs of anger (e.g., rapid breathing)
6. Now, shift all your attention to the soles of your
feet
7. Slowly, move your toes, feel your shoes covering
your feet, feel the texture of your socks or hose, the
curve of your arch, and the heels of your feet against
the back of your shoes. If you do not have shoes on,
feel the oor or carpet with the soles of your feet
8. Keep breathing naturally and focus on the soles of
your feet until you feel calm
9. Practice this mindfulness exercise until you can
use it wherever you are and whenever an incident
occurs that may lead to you being verbally or
physically aggressive
10. Remember that once you are calm, you can walk
away from the incident or situation with a smile on
your face because you controlled your anger.
Alternatively, if you need to, you can respond to
the incident or situation with a calm and clear
mind without verbal threats or physical aggression
329
330
Intervention Strategies
Individuals with IDDs have diverse needs and
may require a wide range of supports for learning. Therefore it is important to examine the specic features of an intervention that may affect
intervention outcomes (Kaiser & McIntyre,
2010). Intervention teaching strategy, duration,
and settings provide contextual information concerning where, how, and for how long an intervention was performed (Horner, Sugai, &
Anderson, 2010; West, McCollow, Umbarger,
Kidwell, & Cote, 2013). The nature of the modications to mindfulness programs illustrates
ways to meet the diverse learning needs of people
with IDDs when training them in mindfulness.
Teacher characteristics can play a critical role in
the outcomes of mindfulness interventions
(Grossman, 2010; Segal et al., 2002).
Of 17 studies, ten used individual one-on-one
training often supported by, for example, verbal
instruction, guided meditation, role-play, and
self-practice using audiotaped instruction. The
remaining studies used small group training combined with individual feedback (Chilvers et al.,
2011; Lew et al., 2006; Sakdalan et al., 2010),
hand-over-hand modeling (Miodrag et al., 2013),
or individual practice supported by the use of
meditation CDs (Idusohan-Moizer et al., 2015).
One study (Singh et al., 2014) used both individual and small group training but did not specify
under which conditions they were applied.
The duration of an individual intervention
session varied from 20 minutes (Miodrag et al.,
2013) to 1.5 hours (Sakdalan et al., 2010), with
the majority of studies providing a training session of less than an hour (e.g., Singh et al., 2013b,
2014). The duration of the intervention period
also varied. Of 17 studies, ten provided a mindfulness intervention or arranged mindfulness
practice for a minimum of 5 months. The shortest
was 5 days at a residential music camp where a
modied MBSR was delivered (Miodrag et al.,
2013). Studies adopting Meditation on SoF
12 Mindfulness
331
IDDs (Singh et al., 2011c). Although his understanding of mindfulness and IDDs was not clearly
specied, the self-practice period (i.e., 12 months)
he had undergone and his lived experience of
IDDs may provide a good example of instructor
characteristics.
Intervention Effects
All studies reported positive effects of mindfulness training for individuals with IDDs. Of the 17
studies, nine aimed to enhance behavioral wellbeing. Of these, eight provided mindfulness
interventions to reduce the problem behavior of
individuals with IDDs and reported reductions in
problem behavior (e.g., Adkins et al., 2010;
Chilvers et al., 2011; Lew et al., 2006; Singh
et al., 2003, 2007a, 2008b, 2013a). The implications of these results were particularly signicant
for those with IDDs who were at risk of losing
their community living arrangement because of
their uncontrolled problem behavior. The participants of two studies (Adkins et al., 2010; Singh
et al., 2003) maintained their community living
arrangement. The remaining study aimed to
enhance the behavioral well-being of individuals
with IDDs and suggested that mindfulness practice was successful in controlling deviant sexual
behavior (Singh et al., 2011a). Three male adult
offenders with IDDs and mental illness reported
an initial decrease in sexual arousal levels after
practicing Meditation on SoF and further
decreases after adding the MOT procedure.
Four studies reported successful applications
of mindfulness training in enhancing the physical
well-being of individuals with IDDs. Of these,
two studies with four male heavy smokers with
mild IDDs demonstrated a reduction in the number of cigarettes smoked per day to zero after 82,
111, 165, and 77 mindfulness intervention days
(Singh et al., 2011b, 2013b). These participants
remained free of smoking for the next 3 years. A
recent randomized controlled group study with 51
adults with mild IDDs conrmed the successful
use of mindfulness training for smoking cessation
(Singh et al., 2014). Obesity is another area threatening physical well-being. A study with an obese
adult with IDDs and PraderWilli syndrome dem-
332
Tankersley, and Landrum (2009) proposed guidelines for evidence-based practices regarding
research design, methodological quality, quantity
of supporting research, and magnitude of effect.
These guidelines were used to evaluate the 17
mindfulness intervention studies.
Research Design
Evidence standards for research design include
experimental, quasi-experimental, and singlesubject designs (Cook et al., 2009). Randomized
trials and meta-analyses of research ndings
drawn from randomized trials are emphasized as
the gold standard to determine the effectiveness
of a treatment (Sackett et al., 1996). Singlesubject research designs are, however, predominantly used to investigate the effectiveness of
interventions (Kaiser & McIntyre, 2010). This is
because heterogeneity of individuals diagnosed
with IDDs (e.g., areas and degree of support
required, dual diagnosis) poses a signicant challenge to the conduct of randomized trials (Odom
et al., 2005; West et al., 2013). Sackett et al.
(1996) acknowledged that evidence-based practice was not restricted to randomized trials.
Although qualitative research is not included in
standards for research design of evidence-based
practice, it is a valuable tool for identifying individual values, an initial step of evidence-based
process (West et al., 2013).
Of the 17 studies, ten used single-subject
designs. Of these, seven studies adopted a
multiple-baseline design with follow-up phases
between 4 weeks and 3 years (e.g., Singh Adkins
et al., 2010, Singh et al., 2008a). Some ve studies used a pre-post no-control group design
(Chilvers et al., 2011; Idusohan-Moizer et al.,
2015; Lew et al., 2006; Miodrag et al., 2013;
Sakdalan et al., 2010). The two recent studies
adopted a randomized controlled group design
(Singh et al., 2014) and wait-list controlled group
design (Singh et al., 2013b).
Methodological Quality
The methodological quality indicators that are
critical for all types of research designs include
clear descriptions of participants, settings, interventionists, the nature of instruction, and inter-
12 Mindfulness
333
minimum of four acceptable quality group studies or two high-quality studies with weighted
effect size signicantly greater than zero. Horner
et al. (2005) suggested a minimum of ve highquality studies that involve at least 20 total participants, conducted by at least three different
researchers across at least three different geographical locations as standards of study quantity. They did not prescribe evidence standards
for magnitude of effect but suggested documentation of a causal or functional relationship
between use of the intervention and change in
socially signicant dependent measures (i.e.,
intervention effects).
Two experimental mindfulness intervention
studies reported results with effect size. From a
randomized controlled trial, Singh et al. (2014)
reported that the difference between the experimental condition and control condition regarding numbers of cigarettes smoked at the
conclusion of the treatment phase was statistically signicant, with an effect size of 0.74. The
results of the wait-list control study (Singh et al.,
2013b) established within the experimental condition a signicant reduction in the mean number of physical aggression episodes from the
baseline phase to the follow-up phase, with an
effect size of 4.71.
Although nine studies endeavored to document functional relationships between the use of
mindfulness intervention and dependent variables, it was mainly the same research group
that conducted these studies. For this reason, the
evidence standards for a single-subject design
concerning the number of researcher groups
(i.e., ve different groups) and geographical
locations (i.e., three locations) have not been
fullled. There are also ve studies using prepost no-control group design that were excluded
from discussion about evidence-based practice
because of the types of research design.
However, these studies are not without their
value. Intervention studies adopting group
designs and single-subject designs together provide reasons to consider mindfulness training as
evidence-based practice for enhancing behavioral, physical, and psychological well-being of
individuals with IDDs.
334
Family Caregivers
Singh et al. (2007b) provided 12, 2-h sessions of
individual training in mindfulness to four mothers of young children with IDDs (see Table 12.3).
The objectives of the training for mothers were to
reduce their parenting stress and increase their
satisfaction with parenting and parentchild
interactions and their use of mindfulness. The
effects of the training provided to the family caregivers on the aggressive behavior of the children
at home and social interactions at their day care
center were recorded.
The rst author individually taught mindfulness theory and meditation skills to the mothers
(Singh et al., 2007b). The mothers applied their
mindfulness skills to the interactions with their
child for the 12-week training period and for a
52-week practice period. The 12, 2-hour sessions
covered topics on the philosophy of mindfulness
and practices conducive to cultivating mindfulness (e.g., being in the present moment, letting go,
mindfulness in daily interaction), of which some
were reminiscent of the MBSR program (e.g., loving kindness, nonjudgmental acceptance). There
were also topics unique to this program, such as
problem solving. This teaches how to mindfully
address motherchild interaction issues.
Multiple-baseline design across participants
was used to assess any change that occurred during baseline, intervention, and practice. Both parents of each child recorded the incidence of their
childs aggressive behavior at home (interrater
reliability of 96.5 %), and two behavior analysts
Objectives
Reduce aggression
Increase social
interactions
For children:
decrease
behavioral
problems
For parents:
decrease parenting
stress
Participants
4 motherchild
(with DD) dyads
(CA, rst: 23 years
to 4 years 11
months
second: 27 years to
5 years
third: 26 years to
6 years)
fourth: 31 years to
4 years)
46 parents (mean
CA, 35.27 years) of
young children
(mean CA,
3.84 years) with DD
Study
1. Singh
et al. (2007b)
2. Neece
(2014)
Content
Mindfulness parent
training program (12
sessions) addressing:
Introduction to
mindfulness
Knowing mind and
attention
Being in the present
moment
Beginners mind
Being your child
Nonjudgmental
acceptance
Letting go
Loving-kindness
Problem solving
Using mindfulness in
daily interaction
MBSR (8 sessions):
Concepts of
mindfulness, the
psychology and
physiology of stress
and anxiety
Mindfulness exercises
Discussion and sharing
in pairs and in the
larger group
Eight weekly
2-hours sessions:
guided meditation,
discussion, etc.
A daylong (6-h)
meditation retreat
Daily home practice
using audio CDs
Strategies
4 sessions of
2 hours individual
training (week 3, 6,
9, 12)
Table 12.3 Mindfulness interventions for care providers addressing problems of care recipients with DD
Intervention: 8 Weeks
Duration
Intervention: 12 weeks
Practice: 52 weeks
(continued)
For children:
Signicant reductions in ADHD
symptoms (large ES)
Marginally signicant reductions in
attention (large ES)
For parents:
Signicant reductions in self-reported
parenting stress and depression
(large ES)
Signicant increase in satisfaction
with life (large ES)
(In comparison to the control group)
Outcomes
For children: aggression decreased by
33 % (rst), 26 % (second), 30 % (third),
and 36 % (fourth) from baseline to
training and by 87 % (rst), 94 %
(second), 91 % (third), and 88 % (fourth)
from training to practice
Small increases of positive social
interactions (M = 4 %) during training
and larger increases (M = 18 %) during
practice
For mothers:
SUPS and SUIS incrementally increased
SUUM decreased during training and
increased during practice
Statistically (t-test) signicant decrease
in PSI between pre and post-intervention
Objectives
Reduce staffs use
of physical
restraints for
aggressive and
destructive
behaviors of
individuals with ID
Increase learning
and decrease
aggression of 18
individuals with
profound ID
Participants
23 group home staff
responsible for 20
individuals with ID
in 4 group homes
Study
3. Singh
et al. (2009)
4. Singh
et al. (2006b)
Concepts of mindfulness
in comparison to those of
behavioral training
Mindfulness meditation
conducing a clear
understanding of ones
own thoughts and
problems
Content
Mindfulness training
program (2 hours 12
weekly sessions)
Concepts and activities of
mindfulness conducing
mindful interactions with
individuals with ID
(e.g., knowing mind,
work of attention, being
one with the individuals
with ID, nonjudgmental
acceptance, letting go,
loving kindness)
Didactic instruction
Meditation practice
Mindfulnessenhancing exercises
Strategies
12 weekly themes
using various
activities to practice
mindfulness
Mindfulness
homework practice
Intervention: 5-day
intensive behavior
training
30- to 53-week gap
Intervention: 5-day
intensive mindfulness
training
Duration
Intervention: 3 months
Practice: 6 months
practicing mindfulness
skills at work
Outcomes
Incremental decreases in
1. Verbal or physical aggressive
incidents
3. Verbal redirections of staff to avoid
aggression
4. Physical restraints
5. Stat medicine for uncontrolled
aggression
6. Staff injuries
7. Peer injuries
Increases in
2. Verbal exchanges that could result
in physical aggression but not
responded to in any way
1. Mean # of interventions for aggression
decreased from 20.9 (baseline) to 18.4
(B training) and then to 6.2 (M training)
2. Mean # of mastered learning
objectives increased from 4.8
(baseline) to 6.2 (B training) and then
to 11.6 (M training)
3. Mean # of physical restraints
decreased from 12 (baseline) to 7.4 (B
training) and then to 0 (M training)
4 and 5. # of social and physical
activities increased from 2.1 and 8.0
(baseline) to 2.9 and 9.2 (B training)
and then to 7.2 and 18.5 (M training)
6. Mean levels of staff satisfaction
increased from 50.3 (baseline) to 56.3
(behavioral training) and then to 87.7
(mindfulness training)
7. Mean levels of satisfaction with caring
services increased from 60.7 (baseline)
to 65.7 (behavioral training) and then
to 94.3 (mindfulness training)
5. Singh
et al. (2004)
6 caregivers (CA
2844) of 3 male
adults with
profound MD (CA
45, 54, and 55)
3 caregivers learned
mindfulness
Remaining 3
learned behavioral
training
Increase happiness
of adults with
profound MD
Mindfulness training
program (7 sessions)
Introduction to the
concept of happiness and
mindfulness
Mindfulness meditation
activities including
knowing your mind,
oneness of everything,
being in the present
moment, beginners mind
and being the activity
Discussion
Meditation exercise
on various key
concepts conducing
mindfulness
Journaling
Baseline: 4, 7, and 12
weeks
Intervention: 2 months
Practice: 4 months
338
Paid Caregivers
Positive effects were also reported for adults with
IDDs from training their professional caregivers
in mindfulness. Table 12.3 summarizes three
intervention studies that trained professional
caregivers of adults with IDDs in mindfulness
and examined the effects on their care recipients.
In the study conducted by Singh et al. (2009), 23
group home staff of 20 adults with IDDs participated in the mindfulness staff training, composed
of 12 weekly 2-h sessions. The same weekly topics as those of the mindfulness parent training
program were taught with slight modications
(e.g., being one with the individual with IDDs
instead of being one with the child) to meet the
specic learning requirements of the professional
caregivers. They learned meditation methods and
exercises in the group training sessions and were
encouraged to keep a practice journal while continuing their practice at home and work. They
were then instructed to independently practice
for 40 weeks.
Using a multiple-baseline design, the effects
of the training on the adults with IDDs were
monitored through the number of incidents of
aggressive behavior, verbal aggression that did
not escalate into physical aggression, verbal redirections of staff to avoid aggression, physical
restraints, Stat medicines for uncontrolled
aggression, and staff and peer injuries. The
results were consistent with those of mindfulness
intervention studies for family caregivers of children with IDDs. The reductions were observed in
every indicator of physical aggression, along
with the increases in verbal exchange that did not
escalate into physical aggression.
Singh et al. (2006b) demonstrated similar
results of training professional caregivers of
adults with IDDs in mindfulness but using different research and intervention approaches. In this
study they compared the effects of mindfulness
training for professional caregivers to those of
behavior management training with changing
staff ratios. They rst provided 5-day intensive
behavior management training to 15 caregivers
(age range = 2238 years) from three different
group homes responsible for 18 individuals with
profound IDDs and aggressive behavior (age
range = 2547 years). The 5-day intensive mindfulness training was introduced 3053 weeks
after the behavior management training. The
effects of this training for their care recipients
were measured through the number of staff interventions for aggression, mastered learning objectives, physically and socially integrated activities,
and the use of physical restraints.
12 Mindfulness
The results indicated that the behavior management training appeared somewhat benecial
for care recipients, but the mindfulness training
was more so, regardless of differences in staff
ratios. For example at the conclusion of the
behavioral training, the mean number of staff
interventions for aggression and physical
restraints used for uncontrolled aggression
decreased from 20.9 and 12 to 18.4 and 7.4,
respectively. At the conclusion of the mindfulness
training they reduced signicantly to 6.2 and 0,
respectively. The same improvement patterns
were found in the mean number of mastered living skills objectives, which increased from 4.8 to
6.2 upon the completion of behavioral management training and then further increased to 11.6
upon the completion of mindfulness training.
Unlike other studies that trained professional
caregivers, this study also examined the direct
effects of mindfulness training on professional
caregivers who underwent mindfulness training.
The mean level of staff satisfaction with work
increased slightly to 56.3 after the behavioral
training. This further increased to 87.7 after the
mindfulness training. This change was socially
validated. Families and friends of care recipients
with IDDs reported their satisfaction with the
quality of caring service performed by the professional caregivers with a slight increase from
60.7 to 65.7 after behavior training and a remarkable increase to 94.3 after mindfulness training.
Enhancement of happiness for adults with
profound IDDs was another effect of mindful
caring. Singh et al. (2004) trained six caregivers
(age range = 2844 years) of three male adults
(ages = 45, 54, and 55 years) with profound multiple disabilities, three of them with mindfulness
training and three with behavioral training. At the
end of a 2-month training period, consisting of
seven training sessions, and a 4-month practice
period, the quality of the interactions between
care recipients and caregivers was examined.
Observational data from daily leisure activity
sessions were collected and analyzed (93.4 %
interobserver reliability). The results suggested
that the physical happiness indicators (e.g., grinning, widely opened eyes in excitement, clapping) of three care recipients were remarkably
339
Perspectives of Individuals
with IDDs
There are at least three different perspectives on
evidence-based practices, empiricalanalytical,
phenomenologicalexistential, and poststructural (Schalock et al., 2011). It is important to
take multiple perspectives on evidence-based
practice in the eld of IDDs (Schalock et al.,
2011). Empiricalanalytical perspectives emphasize experimental or scientic evidence as the
basis for evidence-based practices. The previous
discussion on evidence standards for research
practices reects this perspective. The phenomenologicalexistential perspective takes into consideration the reported experiences of well-being
in individuals with IDDs for determining intervention decisions and success (Schalock et al.,
2011). The aims of mindfulness intervention
studies were to enhance the behavioral, physical,
and psychological well-being of individuals with
IDDs. Reported experiences of individuals with
IDDs will be useful for determining whether and
to what degree these aims were met. From the
poststructural perspective, public policy principles such as inclusion, participation, self-determination, and empowerment are critical for
making decisions on intervention selection and
success (Schalock et al., 2011). Mindfulness
interventions are clearly in line with this last
perspective.
340
Mindfulness intervention encourages the participation of individuals with IDDs and promotes
inclusion. A systematic review suggested that
long-term practice and long-lasting effects characterize mindfulness interventions for individuals with IDDs (Hwang & Kearney, 2013).
Long-term active commitment to mindfulness
practice is essential for whatever effects (e.g.,
self-management) that arise to last over the long
term. Inclusion, along with independence, was
the ultimate aim of the rst mindfulness intervention study in the eld of IDDs (Singh et al.,
2003), training a male adult in mindfulness to
self-manage his uncontrolled aggression so that
he could maintain his community living arrangement. The same intention of promoting inclusion
of individuals with IDDs was found in the follow-up study (Adkins et al., 2010). Training family and professional caregivers in mindfulness
with an intention to support their care recipients
with IDDs also reects the concept of inclusion.
The focus is not on uncovering the decits of
individuals with IDDs but on understanding the
ecological environments within which behavioral
and psychological problems occur. The attitudes
and well-being of family and professional caregivers inuence interactions with their care recipients and constitute ecological environments.
Self-determination is another central principle
that was observed in mindfulness interventions.
For example, the most recent study provided
mindfulness training to individuals with IDDs for
smoking cessation (Singh et al., 2014). A changing criterion design was used for self-determining
how many cigarettes the participants could smoke
per criterion, which enabled them to pace their
own smoking levels. Gradual increase of independence in individuals with IDDs was also
noted as the intervention began, based on explicit/
external instruction and a movement toward
independent practice (Singh et al., 2013b). Selfdetermination and independence is a way of
respecting and empowering individuals with
IDDs. The use of mindfulness training as a selfmanagement skill highlights the internal regulation of individuals with IDDs rather than the
imposition of external intervention. The emphasis is on the ability rather than the disability of
12 Mindfulness
341
The quality of the teacher cannot be overemphasized in mindfulness intervention, for training
individuals with IDDs in mindfulness requires
not only an understanding of IDDs but also that
of mindfulness. Mindfulness can be learned
through intellectual knowledge and practical
experience, but a mere intellectual understanding
of it, as a technique to be administered, can enrich
neither the instructor nor the instructed
(Grossman, 2010). Substantial and prolonged
practice of mindfulness is a prerequisite for helping others to develop mindfulness (Kabat-Zinn,
2003; Segal et al., 2002). As a result, the statement trained in conducting mindfulness training may not provide sufcient information
regarding the qualities and qualications of the
instructor in a mindfulness intervention study.
342
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Psychopharmacology
13
Shoumitro Deb
Introduction
A high proportion of individuals with intellectual
disabilities (ID) receive medication for either
physical or mental health conditions (Deb &
Fraser, 1994). The reported rate of use of medication including specic use of antipsychotic medications among individuals with ID who live in
community settings varies between 32 and 85 %
(Aman, Sarpharc, & Burrow, 1995; Branford,
1996a; Burd et al., 1997; de Kuijper et al., 2010;
Doan, Lennox, Taylor-Gomez, & Ware, 2013;
Holden & Gitlesen, 2004; Lunsky, Emery, &
Benson, 2002; Singh, Ellis, & Wechsler, 1997;
Stolker, Koedoot, Heerdink, Leufkens, & Nolen,
2002). Nttestad and Linaker (2003) found that
the proportion of adults with ID who received
psychotropic medication remained similar before
and after resettlement into the community from
long stay institutions. Spreat, Conroy, and
Fullerton (2004) compared use of psychotropic
medication in Oklahoma ID system in the USA in
1994 and 2000. They found that approximately
35 % of people with ID in 2000 received at least
one psychotropic medication. Antipsychotics
were prescribed for 20 %, antidepressants for
S. Deb (*)
Division of Brain Sciences, Department of Medicine,
Imperial College London, London, UK
e-mail: s.deb@imperial.ac.uk
347
348
Similar ndings have been reported in other prevalence studies (de Kuijper et al., 2010; Kierman,
Reeves, & Alborz, 1995; McGillivray & McCabe,
2004; Spreat, Conroy, & Jones, 1997).
In a recent prospective 12 months follow-up
study of 100 adults who have been seen by psychiatrists in the UK in their outpatient clinics for
the management of aggressive behavior, Deb
et al. (2015) found that 90 % received psychotropic medication. The new generation of antipsychotics was prescribed most frequently with 48
participants being prescribed one or more new
generation of antipsychotics. The next most commonly prescribed medication class was mood
stabilizers/antiepileptic medications (n = 41), followed by new generation of antidepressants
(n = 29), typical antipsychotics (n = 27), antianxiety medications (n = 9), beta-blockers (n = 8),
older generation antidepressants (n = 5), and psychostimulants (n = 4). As 31 of the individuals
who received antiepileptic medication also had a
diagnosis of epilepsy, it could be argued that antiepileptic medications were used specically for
the management of aggressive behavior only in a
relatively small proportion of cases. For example,
12 of the 21 participants for whom carbamazepine was prescribed had epilepsy. Similarly, 13 of
the 17 participants for whom sodium valproate
was prescribed had epilepsy. The rest of the antiepileptic medications such as lamotrigine,
levetiracetam, gabapentin, zonisamide, and topiramate were all used specically for the treatment of epilepsy. The rate of antiepileptic
medication use reported in this study is not
unexpected as epilepsy is known to affect 25 %
or more adults with ID (Berney & Deb, 2012).
Deb et al. (2015) found that among the antidepressants, mostly the new generation of antidepressants such as citalopram (n = 10), paroxetine
(n = 7), uoxetine (n = 6), sertraline (n = 3), and
escitalopram/mirtazapine (n = 2 each) were prescribed. Only a few received old generation of
antidepressant medications such as amitriptyline
(n = 2), clomipramine (n = 2), and dosulepin
(n = 1). This is in line with the current clinical
practice of antidepressant use among non-ID
populations for the treatment of depression (see
S. Deb
13
Psychopharmacology
349
S. Deb
350
Pharmacological Interventions
for Mental Disorders
Schizophrenia
Treatment with medication comprises only a part
of a comprehensive package of care. The NICE
(www.nice.org.uk) advises that newer antipsychotic medications should be the rst choice.
Newer antipsychotic medications (e.g., risperidone, olanzapine) should be considered for
patients showing or reporting unacceptable
adverse effects caused by older antipsychotic medications (e.g., haloperidol, chlorpromazine).
Patients unresponsive to two different antipsychotic medications (one being a new generation)
should be given clozapine. Depot antipsychotic
medications should be used where there is ground
13
Psychopharmacology
to suspect that a patient may not adhere to prescribed oral therapy. New and old generation antipsychotic medications should not be prescribed
together except during changeover of medication.
351
S. Deb
352
Obsessive Compulsive
Disorder (OCD)
Making a diagnosis of OCD may be very difcult
in adults with limited verbal skills and in those
with autism as obsessions and compulsions may
be confused with rituals that are a signicant feature of autism spectrum disorder (ASD) (see Deb
et al., 2001). However, in cases where OCD is
ascertained, the primary interventions include
psychological treatments such as exposure therapy, response prevention and other behavior therapies such as CBT but a combined medication
and psychological therapy may be most effective.
Pharmacological options include SSRIs and clomipramine. Other medications to consider are
antipsychotics such as risperidone or quetiapine
but not haloperidol; venlafaxine, buspirone, clomipramine, clonazepam (in general used to
reduce associated anxiety), and mirtazepine augmentation of SSRIs.
Panic Disorder
The primary treatment options are nonpharmacological such as CBT, anxiety management including relaxation training though a
combined medication and psychological therapy
may be most effective. In an emergency, a shortterm use of benzodiazepine can be recommended.
In the long term the options for psychotropic
medications are SSRIs (therapeutic effect can be
delayed and patients can experience an initial
exacerbation of panic symptoms), some tricyclic
antidepressants such as imipramine or clomipramine, and reboxitine. Other pharmacological
options include monoamino-oxidase inhibitors
(MAOIs), mirtazepine, sodium valproate, and
inositol.
Antipsychotic Medications
There are a number of old controlled trials involving old generation antipsychotics (see review by
King, 2002; Matson & Neal, 2009). Some of
them have been summarized here. La Malfa,
Lassi, Bertelli, and Castellani (2006) reviewed
the literature on the use of antipsychotic medications in people with ID. The authors identied
195 studies of which 127 were of type V, 44 of
type IV, 9 of type III, 21 of type II, and 4 of type
I evidence. One hundred and seventeen studies
included use of old generation antipsychotics and
78 new generation. Wardell, Rubin, and Ross
(1958) randomized 26 adults with ID to chlorpromazine treatment (100200 mg three times/
day; average daily dose 400600 mg) and 15
adults with ID to placebo in a double blind RCT
for 3 months. There was no signicant difference
in the outcome in problem behavior between two
groups and in fact the chlorpromazine group was
marginally worse. Weir, Kernohan, and MacKay
(1968) randomized 45 in-patients with ID into
pericyazine vs. chlorpromazine vs. placebo
13
Psychopharmacology
353
Risperidone
There are three RCTs of risperidone among
adults with ID (Gagiano, Read, Thorpe,
Eerdekens, & Van Hove, 2005; Tyrer et al., 2008;
van Den Borre et al., 1993). Two of these studies
showed that risperidone was signicantly better
than placebo in improving problem behavior, but
Tyrer et al.s (2008) study did not nd a signicant difference in outcome among groups treated
with risperidone, haloperidol, and placebo. There
are six RCTs among children with ID and with or
without ASD (Aman, De Smedt, Derivan, Lyons,
& Findling, 2002; Buitelaar, van der Gaag,
Cohen-Kettenis, & Melman, 2001; Research
Units on Pediatric Psychopharmacology (RUPP)
Autism Network, 2002; Shea et al., 2004; Snyder
et al., 2002; Van Bellinghen & De Troch, 2001).
RUPP (2002) and Shea et al. (2004) primarily
included children with ASD, some of whom also
had ID whereas Aman et al. (2002) and Snyder
et al. (2002) primarily included children with ID,
but excluded those who had ASD. Of these four
studies, only the RUPP study (2002) was not
sponsored by a pharmaceutical company.
McDougle et al. (1998) in an RCT showed
that some core symptoms of ASD improved signicantly in the risperidone group compared with
the placebo group. Many of these children also
had ID and some showed problem behavior such
as aggression as well. All these studies showed a
signicant improvement in problem behavior in
the risperidone group compared with the placebo
group. Three of the RCTs involving children
were continued for many weeks using open label
designs (Findling, Aman, Eerdekens, Derivan, &
Lyons, 2004; RUPP continuation study, 2005;
Turgay, Binder, Snyder, & Fisman, 2002).
Another open label prospective study also
described long-term effects of risperidone on
children with ID (Croonenberghs et al., 2005).
These studies showed that the efcacy of risperidone had been maintained over 4852 weeks and
354
Adult Studies
The rst published RCT on risperidone involving
adults with ID was carried out in the Netherlands.
van Den Borre et al. (1993) included 37 adults
(1558 years) with ID in their study who showed
aggression, SIB, agitation, hyperactivity, and irritability. It is not clear whether or not the authors
excluded participants who had a diagnosis of
psychiatric disorder. Risperidone (n = 30 after
seven dropouts) 412 mg/day was used as add-on
to the existing medications. A crossover RCT
design was used, which included 1 week washout
followed by 3 weeks RCT followed by 1 week
washout followed by 3 weeks crossover RCT.
Primary outcome measure was Aberrant Behavior
Checklist (ABC) (Aman, Singh, Stewart, &
Field, 1985) total score. Secondary outcome
measures included Clinical Global Impression
(CGI) (Guy, 1976a), Visual Analogue Scale
(VAS) (target behaviors); extrapyramidal symptoms (Extrapyramidal Symptoms Rating Scale;
ESRS) (Chouinard, Ross-Chouinard, Annable, &
Jones, 1980), blood tests, electrocardiograph
(ECG), and the participants weight.
In the rst phase there was 16 % drop in the
total ABC score in the risperidone group and
15 % in the placebo group. In the second phase
there was 27 % drop in the total ABC score in the
risperidone group and 0 % in the placebo group.
The difference in phase one was not statistically
signicant but the difference in phase two was.
There was statistically signicant improvement
in the risperidone group according to CGI
(p < 0.01) (both phases). However, there was no
statistically signicant change according to
VAS. There was also no change between the two
groups in the ECG or the ESRS score. However,
the participants in the risperidone group showed
sedation ten times more commonly than the placebo group. Blood tests did not detect any statistically signicant change in the two groups.
Risperidone was found to be more efcacious
in this study. However, conicting results were
found in two phases of the study in that two
groups did equally well in phase one and the
S. Deb
13
Psychopharmacology
355
Children Studies
Aman et al.s (2002) study included 115 children
(87 included) (age 512 years) with ID. The
authors have excluded children with ASD. A
multicenter parallel design RCT was used in
which 43 children were randomly allocated to
risperidone group in order to receive 1.2 mg/day
mean dose and 44 allocated to the placebo group.
Children were followed up for 6 weeks at the end
of which Nisonger Child Behavior Rating form
(conduct problem subscale) (NCBR-F) (Aman,
Tass, Rojahn, & Hammer, 1996) was used as the
primary outcome measure along with ABC-I,
BPI, VAS, and CGI as secondary outcome measures. According to the authors, 15.2 % of children in the risperidone group as opposed to 6.2 %
in the placebo group showed signicant improvement. Analysis was conducted on an intention-totreat basis. Forty three (78 %) and 44 (70 %)
completed the study from the risperidone and
placebo groups respectively. The reasons for
those withdrawn were variable including insufcient response to medication and noncompliance.
The risperidone group showed a signicant
decrease in NCBR-F conduct subscale scores
(change in score at endpoint 15.2) than did the
placebo (6.2). In the risperidone group, problem
behavior ratings signicantly decreased and
pro-social behaviors increased according to the
social competence subscale. There was signicant
356
improvement in the ABC-irritability, hyperactivity, lethargy subscales, BPI-aggressive, destructive behavior subscales, CGI (p < 0.001), and
VAS (at week 6: p < 0.05). Forty (76.9 %) and 21
(33.4 %) individuals were rated as improved on
the CGI in the risperidone and placebo groups
respectively. Fifty four (98 %) and 44 (70 %)
individuals reported adverse events in the risperidone and placebo groups respectively. Adverse
events in the risperidone group included headache and somnolence but not extrapyramidal
symptoms. Mean weight gain in the risperidone
group was 2.2 kg as opposed to 0.9 kg in the placebo group. Overall this seems to be a good quality study and supports the use of risperidone
among children. However, the study could still be
underpowered and the follow-up period was short
although improvement was apparent within the
rst week or two of treatment. The improvement
was not dened, and methods of randomization
and allocation concealment were not well
described.
Findling et al. (2004) followed up 107 children from Aman et al. (2002) study in an open
label design for 48 weeks extension. The same
outcome measures as in Aman et al.s (2002)
study were included such as NCBR-F, ABC-I,
CGI-I, BPI, and VAS. Fifty (47 %) children completed the trial. Improvement with risperidone at
1.51 mg/day mean dose was maintained for 48
weeks. Although the dropout rate was high, they
are not always necessarily due to the adverse
effects of risperidone.
RUPP (2002) study included 101 children (517
years) with ASD, 74 of whom had ID and 12 borderline intelligence. The authors used multicenter
parallel design RCT for 8 weeks in which 49 children were randomized to receive 0.53.5 mg/day
mean dose of risperidone and 52 to receive placebo. The primary outcome measure was ABC-I
and the secondary measure was CGI-I.
Data were analyzed using an intent-to-treat
principle. There were four withdrawals (three in
the risperidone group and one in the placebo
group). An additional 17 individuals in the placebo group failed to complete the study due to
various reasons including the lack of efcacy and
consent withdrawal. In the risperidone group
S. Deb
13
Psychopharmacology
357
S. Deb
358
Aripiprazole
Deb et al. (2014) recently published a systematic
review on the efcacy of aripiprazole in the management of problem behavior among individuals
13
Psychopharmacology
359
S. Deb
360
Polypharmacy
Despite the widespread condemnation of and
lack of evidence for the efcacy of polypharmacy
(simultaneous use of more than one) of antipsychotic medications, this practice remains
13
Psychopharmacology
361
Withdrawal Studies
As for antipsychotics specically, a number of
studies have shown that it is possible to either
reduce the dose of antipsychotic medications or
successfully withdraw them altogether after
many years of use (Ahmed et al., 2000; Branford,
1996b; de Kuijper, Evenhuis, Minderaa, &
Hoekstra, 2014; Luchins, Dojka, & Hanrahan,
1993). However, it is only possible if an active
program of antipsychotic withdrawal is implemented (Branford, 1996b). Branford (1996b) has
shown that certain factors inuence the success
of antipsychotic withdrawal regimes. These
factors include lower initial dose (<100 mg
362
chlorpromazine
equivalent
daily
dose),
monopharmacy, presence of minimal psychopathology, lack of hyperactivity, aggression, stereotyped behavior, resident in community staffed
residential facilities, and presence of epilepsy.
Withdrawal studies specically of antipsychotic medications have shown that in 2550 %
of cases antipsychotic medications could be
withdrawn successfully after long-term use
and in a proportion of cases the dosage could
be reduced without any adverse consequences
(Ahmed et al., 2000; Branford, 1996b; de
Kuijper et al., 2014; May et al., 1995; Wressell,
Tyrer, & Berney, 1990). Encouragingly,
Janowsky, Barnhill, Khalid, and Davis (2006)
found 66.3 % (55/83) of individuals remained
antipsychotic free almost 10 years after withdrawal. However, in a subsequent study
Janowsky, Barnhill, Khalid, and Davis (2008)
demonstrated that unfortunately it becomes
extremely difcult to withdraw antipsychotic
medications altogether in a very high proportion of those who showed a relapse of problem
behavior after one or two attempts of drug withdrawal. A number of authors (Aman, Singh, &
Fitzpatrick, 1987; Christian, Snycerski, Singh,
& Poling, 1999; de Kuijper et al., 2014; Singh
et al., 1996) have highlighted the inuence of
staff attitude on withdrawal studies that used
open label design which shows an urgent need to
conduct placebo controlled withdrawal studies.
Adverse Events
Mahan et al. (2010) showed that among 80 individuals with ID in the USA, polypharmacy of
psychotropic medication from different classes
increased the likelihood of developing adverse
events. A number of measures have been used
either in their original form or in adapted versions in order to assess adverse effects of psychotropic medications in individuals with ID. Some
of these are: Udvalg for Kliniske Undersgelser
(UKU) scale (Lingjaerde, Ahlfos, Bech, Dencker,
& Elgen, 1987), Abnormal Involuntary
Movement Scale (AIMS) (Guy, 1976b), Simpson
Angus Scale for extrapyramidal side effects
S. Deb
13
Psychopharmacology
363
S. Deb
364
Conclusion
As antipsychotic medications are the most widely
used drugs for the management of problem
behavior in individuals with ID, it is not surprising that most of the evidence is based on their
efcacy. Most evidence for the new antipsychotic
medications was based on RCTs on risperidone
(which is the most widely used antipsychotic
medication for this purpose) apart from two
RCTs on aripiprazole. There are also some RCTs
conducted on the older antipsychotics such as
chlorpromazine and haloperidol. It appears from
the RCTs available so far that there is at present
equivocal evidence for the efcacy of risperidone
among adults with ID with problem behaviors,
two studies showing positive and one showing
negative nding.
There is, however, now sufcient good quality
RCT based evidence available to support risperidones efcacy among children with ID (with or
without ASD) in the management of problem
behaviors. These studies found a signicant
reduction in scores for the risperidone group
compared with the placebo group on the Clinical
Global
Impression-Improvement
(CGI-I),
Aberrant Behavior Checklist, and Visual
Analogue Scale as an outcome measure to rate
the most troublesome target behavior (p < 0.05).
A total of 109 (54.5 %) participants were rated as
much improved or very much improved at
endpoint on the CGI-I in the risperidone treated
groups (n = 200) and 24 (11 %) in the groups that
received placebo (n = 218). Our meta-analysis
(Unwin & Deb, 2011a) showed that the overall
Number Needed to Treat (NNT) to achieve a rating of much or very much improved on the
CGI over a period of 48 weeks of treatment with
risperidone versus placebo is 3 with a range
between 2 and 5. However, main concern about
13
Psychopharmacology
Antidepressants
On the whole, ten studies were retrieved using
the systematic review. Further information on the
antidepressants is provided in the systematic
review by Sohanpal et al. (2007). Of these studies, there was one RCT (Lewis, Bodsh, Powell,
& Golden, 1995), which investigated the effectiveness of the tricyclic antidepressant clomipramine. The remaining studies explored the
effectiveness of selective serotonin reuptake
inhibitors (SSRIs). One cohort study (Troisi,
Vicario, Nuccetelli, Ciani, & Pasini, 1995)
(n = 19; median follow-up for 36 weeks) and two
open trials (Cook, Rowlett, Jaselskis, &
Leventhal, 1992; Markowitz, 1992) (n = 10 and
20, respectively, with variable follow-up for
7467 days and 3 months respectively) looked at
the efcacy of uoxetine. Of the prospective case
series studies, there was one on uoxetine
(Bodsh & Madison, 1993) (n = 16; follow-up for
4 months), two on uvoxamine (La Malfa,
Bertelli, & Conte, 2001; La Malfa, Bertelli,
Ricca, Mannucci, & Cabras, 1997) (n = 60 and 14
respectively; 6 weeks follow-up each) and one on
365
S. Deb
366
Conclusion
The existing evidence on the use of antidepressants for the management of problem behavior in
adults with ID is scant. The study on clomipramine showed benecial effects (Lewis et al.,
1995) but the cohort size was very small (n = 10).
However, responses to the SSRIs were varied
whereby some studies reported clear favorable
results (Janowsky et al., 2005; La Malfa et al.,
1997, 2001; Markowitz, 1992), some showed
negative effects (Bodsh & Madison, 1993;
13
Psychopharmacology
367
368
S. Deb
13
Psychopharmacology
369
Conclusion
There are only a small number of RCTs on mood
stabilizers primarily on lithium. Although all
these studies showed that a proportion of patients
treated with lithium improved it was not clear
whether this improvement was signicant compared with the placebo group and also the outcome measures used were not validated and
standardized. Also the participants were all inpatients, which makes it difcult to generalize
these ndings for individuals with ID who are
living in community settings. Therefore, it is difcult to draw any denitive conclusion on the
efcacy of lithium for the treatment of aggression
in people with ID. Some studies showed effectiveness of lithium on particular problem behaviors but not on others. There is also the ethical
issue of using lithium on individuals with particularly severe ID who cannot give informed consent to which is effectively a lifelong treatment as
it is difcult to withdraw lithium once started.
Therefore, it may not be ethical to prescribe lithium to someone who cannot give informed consent to a treatment which has potential long-term
major adverse effects and narrow window
between therapeutic serum level and toxic level.
In some individuals with severe and profound ID
it may not be possible to carry out blood tests that
are mandatory.
There are also potentially less toxic alternatives
to lithium available, which may not require regular blood tests. Within this context it is difcult to
recommend lithium for use in people with severe
and profound ID unless absolutely necessary. In
the Deb et al. (2015) prospective 12 months follow-up study, there is little evidence of use of
lithium by the UK psychiatrists. Unfortunately
currently there is not much evidence for the
370
Antianxiety Medications/
Beta-Blockers
Antianxiety Medication
King and Davanzo (1996) reported in a prospective uncontrolled study of 26 adults with ID (age
range 2563 years) (46 % male) on the effect of
buspirone 2560 mg/day (average 52 mg/day) on
aggression and/or SIB in people with ID. This
study did not show any improvement from
buspirone.
Beta-Blockers
Ward, Tharian, Roy, Deb, and Unwin (2013)
have recently published a systematic review on
the use of beta-blocker medications such as propranolol, nadolol, acebutalol, metoprolol, and
oxprenolol in the treatment of problem behavior
in individuals with ID. They found 14 studies primarily on propranolol, dose ranging up to 340 mg
a day, which included between one and 19 participants. However, as none of these studies are
RCTs it is difcult to draw any denitive conclusion on the efcacy of beta-blocker medications
in the treatment of problem behavior including
aggression among individuals with ID.
There were nine prospective studies: Ratey
et al. (1986) (n = 19; average follow-up for 6
months) (propranolol average daily dose for
women 132 mg, men 130 mg; one patient was on
nadolol); Connor, Ozbayrak, Benjamin, Yusheng,
S. Deb
13
Psychopharmacology
371
Opioid Antagonists
Conclusion
Conclusion
372
Psychostimulants
Most studies of psychostimulants have been used
on individuals with a diagnosis of Attention
Decit Hyperactivity Disorder (ADHD).
Therefore, almost all the studies used ADHD
symptoms as outcome measures than problem
behavior or aggression per se, although problem
behaviors are often included in the outcome measures as part of the ADHD symptoms. Therefore,
it is difcult to nd any evidence to prove effectiveness of psychostimulants specically for the
management of problem behavior or aggression
per se in individuals with ID without a diagnosis
of ADHD. One study by Aman and Singh (1982)
used an RCT design to compare methylphenidate
with placebo for the management of different
problem behaviors among 28 participants (age
13.626.4 years) with ID. Overall no signicant
effect was found from the medication.
Discussion
The evidence presented in this chapter on the
effectiveness of psychotropic medications has to
be interpreted with caution. Most studies in this
eld are case reports on a small number of participants. It is known that studies with positive
ndings are more likely to be published than
studies with negative ndings. This is likely to
create a reporting bias for the published case
reports. There are only a few RCTs, but they
often used a small cohort size, resulting in insufcient statistical power to draw rm conclusions.
The outcome measures used are often not appropriate or validated. The method of selection of
the control group and the experimental group is
not always clear or appropriate, and outcome
data are often not presented in an appropriate
manner. For example, most studies neither quote
the number needed to treat (NNT) nor use analysis based on the intention to treat (ITT). Most
studies do not distinguish symptoms of psychiatric illness from those of problem behaviors, and
often researchers do not take into account the
existence of ASD and ADHD symptoms in the
context of problem behavior. Also in many
S. Deb
13
Psychopharmacology
373
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Assistive Technology
14
Introduction
The expression assistive technology is normally used to indicate any technical device that
can be employed to help persons with different
disabilities to improve their general performance
and thus reduce the negative impact of their disability conditions (Bauer, Elsaesser, & Arthanat,
2011; Belva & Matson, 2013; Brown, Schalock,
& Brown, 2009; Lancioni, OReilly, Singh,
Oliva, & Groeneweg, 2003; Lancioni, Singh,
OReilly, Sigafoos, & Oliva, 2014b; Reichle,
G.E. Lancioni (*)
Department of Neuroscience and Sense Organs,
University of Bari, Corso Italia 23, Bari
70121, Italy
e-mail: giulio.lancioni@uniba.it
N.N. Singh
Medical College of Georgia, Augusta University,
Augusta, GA, USA
M.F. OReilly
University of Texas at Austin, Austin, TX, USA
J. Sigafoos
School of Educational Psychology,
Victoria University of Wellington, Wellington,
New Zealand
D. Oliva
Department of Special Education, The University of
Texas at Austin, Austin, TX, USA
R. Didden
Radboud University Nijmegen,
Nijmegen, The Netherlands
383
384
Microswitch-Aided Programs
to Allow Stimulation Control via
Minimal Responses
Persons with pervasive disabilities have no contact with the outside world and no opportunity to
control any element of that world (Holburn et al.,
2004; Lancioni, Singh, OReilly, Sigafoos, &
Oliva, 2014c). This condition causes them to be
totally dependent on others and risk inadequate
stimulation inputs. For example, they might be
provided with excessive or insufcient levels of
stimulation; they might also receive not highly
preferred types of stimulation. The only way to
modify this situation is to enable these persons to
develop some control of their surrounding with
the minimal response repertoire that they have.
The only way to achieve such a goal might be
represented by the use of microswitch technology (Gutowski, 1996; Mechling, 2006; Saunders,
Smagner, & Saunders, 2003). This technology
allows one to monitor minimal responses of the
person (e.g., eyelid, chin, and lip movements).
Linking such technology to sources of environmental stimulation would then enable the minimal responses to activate those sources and,
consequently, allow the person to achieve control
of his or her stimulation input (Holburn et al.,
2004; Lancioni et al., 2007a, 2007b, 2010a,
2011a, 2013b; Mechling, 2006). For example, an
optic microswitch (e.g., a photocell) placed under
the persons chin and linked to a series of chimes
may allow the person to activate the chimes
stimulation with a simple downward movement
of his or her chin. A pressure microswitch xed to
the armrest of a childs wheelchair and linked to
a video (i.e., a preferred cartoon) may allow the
child to activate the video for a brief period of
time with a light nger-push response. In essence,
Microswitch-aided programs to
promote choice
Microswitch-aided programs to
foster assisted ambulation
Areas
Microswitch-aided programs to
allow stimulation control via
minimal responses
16.5
32, 19
20, 14
1
2
2
2
2
3
2
2
11
8
10, 27
518
518
19, 20
817
34, 31
8, 12
21, 26
13
741
5.511
3.5
2
1
4
5
1
Age (years)
9
619
512
Participants
1
3
3
Studies
Lancioni et al. (2005a)
Mechling (2006)
Lancioni et al. (2011a)
(continued)
14 Assistive Technology
385
Areas
SGDs for active communication
(making requests)
Studies
Lancioni et al. (2011e)
Van der Meer et al.
(2012a)
Van der Meer, Sutherland,
OReilly, Lancioni, and
Sigafoos (2012b)
Sigafoos et al. (2013)
Lancioni et al. (2000)
Lancioni et al. (2011d)
Cannella-Malone et al.
(2011)
Lancioni et al. (2013c)
Lancioni et al. (2014a)
Age (years)
33
510
511
4, 5
2347
3338
1113
31, 33
3644
Participants
1
4
4
2
6
3
7
2
3
386
G.E. Lancioni et al.
14 Assistive Technology
387
388
responding under the different stimulus conditions, a program extension was implemented.
Such an extension consisted of three sessions, in
which only the stimulus condition that had promoted the highest level of responding was used.
The results of the rst assessment period showed
that the level of responding was highest (i.e.,
between ve and nine responses per 3-min segment) with the instructor-created video condition. During the program extension, the response
level remained satisfactory for all three
participants.
Lancioni et al. (2011a) worked with three
children who were between about 5 and 12 years
of age and presented with profound intellectual
disabilities, severe visual impairment or blindness, spastic tetraparesis, lack of any engagement
with objects, and absence of communication
skills. The responses selected for them consisted
of mouth closing (i.e., a reduction of the distance
between the upper and lower lips), eyebrow lifting (i.e., an upward movement of the right eyebrow of about 4 mm), and repeated eyelid
14 Assistive Technology
389
Fig. 14.5 Schematic representation of optic sensors held in front of a persons mouth to monitor lip/mouth positions
and possible changes in those positions (frames IIII) (see Lancioni et al., 2013b)
390
Fig. 14.8 Schematic representation of an optic sensor xed on the persons forehead to monitor forehead skin movements or eyebrow movements (see Lancioni et al., 2013b)
Fig. 14.10 Schematic representation of color dots on the side of the nose and under the lower lip used to enable a
camera-based microswitch to monitor mouth-opening or mouth-closing movements (see Lancioni et al., 2013b)
14 Assistive Technology
Microswitch-Aided Programs
to Foster Assisted Ambulation
Ambulation (walking) is a critical skill with a
multitude of practical and social implications. In
fact, ambulation can be instrumental to allow a
person to reach different places in order to get
involved in different activities and/or meet different people (Hayakawa & Kobayashi, 2011;
Lancioni et al., 2009d). Ambulation can also be
used as a strategy by which a person promotes his
or her overall tness and health condition
391
392
For example, Lancioni et al. (2005c) conducted a study with an adolescent of 13 years of
age who was considered to function in the profound intellectual disability range and was
affected by blindness, spastic tetraparesis, and
scoliosis. He could walk only if he was physically supported by a person or used a four-wheel
support walker device ensuring postural control.
His ambulation performance with the walker,
however, was relatively modest (i.e., he walked
only few steps), and this was attributed to a
motivation problem, that is, to his lack of interest in engaging in a behavior that was quite
costly and did not produce any positive/reinforcing consequences. To increase his motivation and thus promote ambulation, a
microswitch-aided program was used. In practice, optic microswitches monitored his step
responses and ensured the occurrence of stimulation contingent on their performance, through
the control system to which they were linked.
The stimulation consisted of audio recordings of
brief music segments and praise statements. The
study involved an ABAB sequence in which A
represented baseline phases and B intervention
phases (Barlow et al. 2009). During the rst
intervention phase, his mean frequency of steps
per session more than doubled the baseline values. Those values declined during the second
baseline to increase again during the second
intervention phase. During the intervention
phases, the participant also showed an increase
in indices of happiness (i.e., smiles or excited
vocalizations).
Lancioni et al. (2007d) conducted a study
aimed at promoting ambulation with two children (of about 7 and 9 years of age) and two
adults (of about 19 and 41 years of age). Three
of the participants presented with spastic tetraparesis, while the other participant was diagnosed with low muscle tone. All participants (a)
were able to stand and make some steps with
support, (b) were considered to function in the
profound intellectual disability range, and (c)
had been involved in the use of four-wheel support walkers. For three of them, the walkers
also included a harness holding them and lifting
part of their weight. To follow the step responses
with positive stimulation, microswitch solutions and a control system were used for each
participant. For two of the participants, microswitches were used to detect each (left- and
right-foot) step. For the other two participants,
microswitches would detect only their rightfoot steps. The stimulation available for the
single steps of the former participants was
shorter than the stimulation available for the
right-foot steps of the latter participants (i.e.,
2.5 s versus 5 or 6 s). The study included an
ABAB sequence in which A and B represented
baseline and intervention phases, respectively.
Data showed that all participants had large
increases in their frequencies of steps during
the intervention phases of the study. They also
showed increases in indices of happiness during the same phases of the study.
Lancioni et al. (2010b) extended the use of
microswitch-aided programs to promote ambulation to ve new children between about 5.5 and
11 years of age. The children had a level of functioning, which was reported to be in the severe or
profound intellectual disability range and were
affected by spastic tetraparesis. Four of them also
had visual impairment. The children were known
to manage some ambulation steps if provided (a)
with extensive physical support from a caregiver
or (b) with a four-wheel walker containing a
frame to support them around their chest and
under their arms and a harness or saddle so as to
secure their postural control and lift part of their
body weight. Although the walker could be considered sufciently secure/supportive for the
children, their tendency to ambulate when using
it was low. They performed only a few steps, and
the suggestion was that their motivation to walk
was modest and needed improvement. Given this
evidence and the question about their motivation,
the use of microswitches and contingent stimulation (i.e., preferred stimulation following the performance of steps) was considered to be a
possibly decisive intervention package. The
microswitches used and their position changed
across participants in line with their practical
condition and context. For example, some children had the microswitches linked to their shoes,
and others had the microswitches attached to
14 Assistive Technology
Microswitch-Aided Programs
to Promote Choice
The computer-aided programs previously examined were successful in helping participants to
get active (i.e., via the performance of a minimal
response or of ambulation steps) and thus obtain
positive environmental stimulation (Lancioni
et al., 2014b, 2014c). The positive (appealing/
motivating) characteristic of the stimulation,
which was ensured through the use of a selection
procedure based on repeated observations and
stimulus preference screening, was to guarantee
the participants eagerness to receive such stimulation and thus their general motivation to
respond with consistency over time. Microswitchaided programs are also available in which the
participants are provided with an active role so
that they can choose the stimulation they want to
have by themselves (Lancioni et al., 2006b,
2013b; Sullivan et al., 1995). The choice opportunity can be exercised in two main ways. One of
these ways involves the performance of different
responses connected to different microswitches,
each of which provides access to a specic form
of stimulation. The second way involves the (a)
performance of an afrmative/selection response
in relation to the presentation of samples (pre-
393
394
14 Assistive Technology
or the end of a stimulus event, the system presented the next sample and this continued,
according to the same conditions, until all samples available for the session had been presented.
During the 98 and 124 intervention sessions, the
participants responded to 70 or 75 % of the samples of the preferred stimuli and 10 % or less of
the samples of the non-preferred stimuli. A
camera-based microswitch was used for monitoring the smiling response. It might be worthwhile
to underline that the successful choice outcome
obtained with the smile response and the camerabased microswitch was in clear contrast with the
choice failure obtained with a control response
(i.e., vocal emission), which was in the participants repertoire, but appeared less immediate
(i.e., less amenable for use in a time-sensitive
task situation such as the choice context).
Lancioni et al. (2011c) assessed a
microswitch-aided choice program with two
adults of 34 and 31 years of age whose general
conditions and assessment reports were similar
to those described in the previous studies. The
computer system included a set of 16 stimuli at
each session. Twelve stimuli were considered to
be positive/preferred (e.g., music and familiar
stories and voices), while the other four were
considered negative/non-preferred (e.g., distorted sounds). The system presented the sample
of each stimulus for about 5 s. If the participants
made an afrmative/selection response within
6 s from the end of the sample, the computer system presented the corresponding stimulus for
20 s. A new response within 6 s from the end of
a 20-s stimulus event led the system to repeat the
same stimulus or the next 20 s of it. The response
consisted of a slight hand closure, which was
recorded through a pressure microswitch
attached to the palm of their hand. Abstention
from the afrmative/selection response after a
stimulus sample or the end of a stimulus event
led the system to have a brief pause and then
present the next stimulus sample of the set available for the session. During the 304 and 129
intervention sessions, the mean frequencies of
positive stimuli chosen per session were about
eight and seven for the two participants, respectively. Their mean frequencies of responses per
395
Microswitch-Aided Programs
for Promoting Positive Responding
(and Stimulus Control)
and Reducing Problem Behavior
or Posture
The basic concern with persons with extensive
intellectual and multiple disabilities is their limited range of adaptive responses and their failure
to engage with their environment to enrich their
input and/or increase their adaptive behavior
(Lancioni et al., 2013a; Zucker, Perras, Perner, &
Murdick, 2013). The studies reviewed above represented an attempt to provide an answer to such
concern. Another concern with a number of these
persons may be related to problem behavior (e.g.,
hand mouthing and eye poking) and problem
postures (e.g., head forward bending).
Conventional intervention approaches have generally focused on the two types of concerns in a
separate way, that is, with programs aimed at promoting positive responding (and independent
access to environmental stimulation) and with
programs aimed at curbing problem postures and
behavior (Lancioni, Singh, OReilly, & Sigafoos,
2009c). Over the last decade, successful evidence
has been reported about the possibility of targeting both types of concerns within a single
approach that combines microswitches for monitoring the positive/adaptive responding and the
problem posture/behavior (Lancioni et al. 2007e,
2008c, 2013a, 2013b, 2013e).
For example, Lancioni et al. (2007e) reported
a program using combinations of microswitches
(i.e., microswitch clusters) for two children of
about 8 and 12 years of age, who were considered
to function in the profound intellectual disability
396
14 Assistive Technology
397
398
14 Assistive Technology
399
400
the initial intervention phase focused on establishing the microswitch response, which entitled
the participants to access brief periods of preferred stimulation on their own (i.e., directly).
The second intervention phase focused on teaching the SGD response, which was followed by
conditions identical or similar to those described
for the previous study. The last intervention
period provided the participants the opportunity
to perform either response (as they wanted) and
receive the consequences available. Data showed
that the intervention phases were effective to
establish the microswitch responses as well as
the SGD responses. During the last part of the
intervention (i.e., when either response could be
emitted), the participants showed satisfactory
performance, with a general preference for the
microswitch response. A social validation assessment yielded results in line with those reported
for the previous study.
14 Assistive Technology
401
402
The participants preferences for the communication conditions varied. Only two children showed
a strong preference for the SGD device.
Sigafoos et al. (2013) carried out a study with
two children of 4 and 5 years of age, who had a
diagnosis of autism spectrum disorder and displayed marked developmental delays with poor
adaptive and communication behaviors. The program consisted of teaching the two children to
request continuation of toy play via an Apple
iPad device with Proloquo2Go software. The
iPad was congured with a single graphic symbol, which was in the upper left quadrant (with
the other three quadrants being blank). The children were provided with 310 requesting opportunities within each intervention session. Each
trial started with the child selecting a toy and
playing with it and continued with the experimenter gently taking the toy away. The child was
to touch the symbol on the iPad to request the
opportunity to continue playing with the toy. Any
request led the experimenter to deliver the toy
back so that the child could continue to play with
it. Data showed that both children learned to
request the toy very rapidly and, concomitant
with their learning, they got rid of behaviors such
as hitting the person and reaching for the object,
which were displayed during the baseline period.
The children maintained their request ability over
time and generalized it to other stimuli.
Technology-Aided Programs
for Promoting Functional Activities
Constructive (functional) activity engagement is
an important goal of programs for persons with
intellectual and multiple disabilities who do not
present with main motor impairment that would
prevent them from using objects (Ramdoss et al.,
2012; Taylor & Hodapp, 2012). While activity
engagement is a widely agreed objective and a
way to help the persons acquire a positive role
with benecial effects in terms of general stimulation, social status, and acceptability, the
achievement of such an objective may be difcult
with many of those persons. Memory problems
(i.e., difculties to remember the sequence of
14 Assistive Technology
403
404
14 Assistive Technology
Considerations
on the Technological Resources
and Intervention Outcomes
Reviewed
Microswitch-Aided Programs
Intervention programs with microswitches may
be very helpful for enabling participants with
intellectual and multiple disabilities to (a) control
405
406
can have benecial effects also on mood and, possibly, quality of life (Dillon & Carr, 2007; Lancioni,
Singh, OReilly, Oliva, & Basili, 2005d; Petry,
Maes, & Vlaskamp, 2005, Petry et al., 2009). A
number of studies have documented an increase in
indices of happiness during intervention sessions in
which microswitch activation allows the person
access to the preferred stimulation (Lancioni et al.
2005d, 2007c, 2013b). This type of benet can be
considered as important as (or even more important
than) the development of adaptive responding per
se (Szymanski, 2000).
A third consideration concerns the benecial
effects of the programs for the social perception
of the person (i.e., for the way the person is perceived and rated within his or her context).
Indeed, persons who show an active role and
independent engagement provide a more positive image of themselves than persons who are
passive and rely on others for stimulation input.
In turn, programs that facilitate the persons
active engagement are considered useful and
desirable. Evidence of the aforementioned
points can be found in social validation studies
in which social raters are employed to assess (a)
the persons general behavior within program
sessions and outside of the sessions and (b) the
possible relevance of the program in the persons daily context (Lancioni et al. 2005b,
2006a, 2013b).
A fourth consideration concerns the acquisition of choice and the possibility of increasing
adaptive responding and curbing problem postures/behavior independently. The question of
choice is relevant also in light of the fact that the
general approach to persons with severe/profound and multiple disabilities is concerned with
environmental enrichment more than with individual involvement and possible selection of the
more attracting/preferred stimuli (Mitchell, 2012;
Tullis et al., 2011). Microswitch-aided programs
may be the only way to allow the persons to operate a decision (i.e., a stimulation selection) based
on individual preferences (Lancioni et al. 2006b,
2013b). The possibility of helping many of these
persons to reduce problem postures/behavior
amounts to helping them develop a clear form of
self-control that frees them from outside restric-
14 Assistive Technology
reported were arranged (i.e., with the microswitch responses allowing systematic stimulation
access and the SGD response allowing verbal/
auditory responses intermittently accompanied
by physical contact), the request of caregiver
attention did not appear to be excessively frequent and to require consistent levels of caregiver
physical involvement. This condition could be
considered mostly reconcilable with the supervising and management duties of many caregivers employed within education/rehabilitation or
care contexts.
As single solutions, SGD devices can be
highly useful in a variety of daily situations in
which the participants are expected to learn to
communicate their requests successfully (i.e., in
a way that is easily understandable to any communication partner). Only successful communication can allow immediate access to events that
are reinforcing and motivating for them. For
example, one can envisage this kind of approach
in snack situations as well as in play or occupational situations (Sigafoos et al., 2009, 2013,
2014a, 2014b; Van der Meer et al., 2012a, 2012b).
Obviously, the devices used and the number of
requests involved in the communication
exchanges need to match the characteristics of
the persons involved in the programs (e.g., Van
der Meer et al., 2012a; Lancioni et al., 2011d).
New research will need to clarify how programs
can proceed (a) from single requests to multiple
requests and (b) from specic communication/
request sessions to the possibility of exercising
communication/request during most part of the
day. The technology and procedural conditions
used may also need to be reconsidered. For
example, one could envisage a context containing
several SGD devices so that the person would
have one of the devices almost always visible,
with the possibility that this could promote/facilitate his or her communication initiatives. The
investigation of the motivating/reinforcing potential of larger (nonconventional) arrays of stimuli
may also be necessary so as to have a request
interest also for those persons who seem minimally attracted by daily events (Davies, Chand,
Yu, Martin, & Martin, 2013; Li, Bahn, Nam, &
Lee, 2014).
407
Technology-Aided Programs
for Functional Activity
Programs aimed at helping persons with intellectual and multiple disabilities to perform
functional/vocational activities can be considered critical to provide those persons (a) a relevant role within their domestic and education/
rehabilitation environment and (b) a possible
chance to enter a work environment (Lancioni
et al., 2014a). The studies reviewed indicate
that different technology solutions may be
envisaged for helping these people achieve
their activity goal. The different solutions need
to be carefully matched to the characteristics of
the persons involved and the type of activity
goals that are targeted. For example, a computer-aided program based on pictorial instructions and involving reinforcing events and
prompt opportunities may prove largely effective with people with severe intellectual or multiple disabilities. Indeed, pictorial instructions
may be or become rapidly clear to these people
and provide the information they need for each
step of the activities targeted. The reinforcing
events may ensure the motivation for them to
continue their involvement and accuracy. The
prompt opportunities may be an important
resource to solve possible breaks in performance. A systems self-protection mechanism
to deal with repeated key presses may be a
guarantee in case of motor disabilities (Lancioni
et al., 2010a, 2010b, 2013b).
The use of video prompting may be an alternative to static pictorial representations with
potential advantages on such representations for
persons with moderate/severe intellectual and
multiple disabilities. In theory, the dynamic presentation of the actions required for the single
activity steps may be considered more illustrative
and thus more effective than static pictorial representations. With regard to this point, there is evidence favoring the video prompting approach
(Banda et al., 2011; Mechling & Gustafson,
2009) and evidence indicating a general equivalence of the approaches (Perilli et al., 2013).
Indeed, the nal outcome of a program may not
only depend on the types of instructions used but
also on other variables, such as the responses
408
Conclusions
The studies reviewed and the considerations formulated above can be taken as positive evidence
that emphasizes the possibility of relying on
14 Assistive Technology
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Lancioni, G. E., Singh, N. N., OReilly, M. F., Sigafoos,
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Lancioni, G. E., Singh, N. N., OReilly, M. F., Sigafoos,
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15
Introduction
Positive behavior support (PBS) is emerging as a
primary approach for addressing problem behavior within educational, disability, and community
support settings (Odom, Horner, Snell, &
Blacher, 2007). Frequent and severe problem
behaviors are a major cause of isolation and
exclusion for people with disabilities (Koegel
et al., 1996; Lehr & Brown, 1996; National
Institutes of Health, 1989; Reichle, 1990).
Between 10 and 40 % of children with disabilities display frequent and severe problem behaviors (Durand, 2015; Einfeld, Tonge, & Rees,
2001; Lowe et al., 2007), and current epidemiological estimates suggest 1520 % of individuals
with intellectual disabilities exhibit one or more
types of problem behavior (Emerson et al., 2001;
Lowe et al., 2007; Reichle & Moore, 2014).
Moreover, problem behaviors are increasingly
more likely among individuals who experience
severe and multiple developmental disabilities
(Harvey, Boer, Meyer, & Evans, 2009; Reichle &
Moore, 2014).
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416
Deinstitutionalization
and Normalization
The 1980s bore great change to how services for
persons with disabilities should be conceptualized, organized, and provided. The disability
rights movement of the time was spurred by the
immense national discontent with the large
15
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420
themes worthy
encouragement.
of
acknowledgment
and
Values Driven
PBS is a technology for changing behavior.
Unlike many behavior change technologies,
however, PBS starts with the values of the person
receiving support, his or her advocates, and those
who will deliver support. The science informs
behavior change, but it is ultimately our values
that dene what is worth changing. The core of
the PBS technology is not simply the reduction of
problem behavior but the improvement of peoples lives (Carr et al., 1999a, 1999b; Koegel,
Koegel, & Dunlap, 1996; National Institutes of
Health, 1991).
In contrast, PBS includes increasing the likelihood of successful opportunities in education,
employment, and the community, as well as
improved health and social well-being of the
individual and his or her stakeholders. The supports necessary to foster such success and
improvement include instructional methodologies for teaching, strengthening, and expanding
prosocial behavior repertories. The primary goal
of PBS is to help an individual change his or her
lifestyle in such a way that all relevant stakeholders (i.e., educators, employers, family, friends,
the individual himself or herself) are afforded the
opportunity to perceive and enjoy an improved
quality of life (Carr et al., 2002).
Within the science of behavior, PBS represents a position from the high moral grounda
position that challenges the design of effective
technology. PBS balances scientic technology
with person-centered values by evaluating all
strategies with respect to efcacy as well as ability to enhance personal dignity and opportunities
for choice (Carr et al., 2002). Support strategies
are focused on producing durable, generalized
behavior change in order to achieve greater
access to community settings, improved social
contact, and a wider array of preferred events
(Horner et al., 1990). The hypothesis of the technology is that if an individuals needs are met,
15
Behavior Based
PBS owes more to applied behavior analysis
(ABA) than any other conceptual foundation.
Behavior is a function of understood principles.
Effective support should be guided by practices
that are empirically documented to work.
Evaluating the antecedent and consequences
associated with a behavior has a long been advocated in ABA (Baer, Wolf, & Risley, 1968;
Bandura, 1969; Kanfer & Saslow, 1969). PBS is
an approach based on valid science. The technology focuses on efcient processes for identifying
when problem behaviors are likely to occur and
what events are likely to maintain the recurrence
(Horner et al., 1990).
Central among the practices used in PBS is the
use of functional behavioral assessment (FBA).
Functional behavioral assessment is the process
of identifying variables that reliably predict and
maintain problem behaviors (Horner, 1999). FBA
serves to denitively identify how inappropriate,
challenging, or problem behaviors function for
the person exhibiting them. The underlying
assumption is that every behavior serves a purpose. Understanding the functional relation
between problem behavior and consequences
(i.e., purpose, motivation, intent) does not serve
to rationalize the inappropriate behavior but does
serve to make it understandable (Singer & Wang,
2009).
Instead of interpreting problem behavior as
the product of indiscernible, active forces within
the individual, PBS supports that behavior is the
product of challenging social situations for which
421
Comprehensive in Scope
Because the values guiding PBS require attention
to both prosocial replacement behaviors and
problem behaviors, behavior throughout an entire
day, and behavior across many days, it is highly
unlikely that a single intervention strategy will be
adequate. From conception, PBS was challenged
to dene a support technology for not simply
solving the problems of a dramatic moment but
preventing that moment, teaching skills to redirect that moment, defusing the moment, preventing the moment from repeating, and most
importantly dening the data system that would
make all this understandable to people who both
deeply cared about the valued outcomes and care
enough to be technically competent. To meet this
challenge, PBS became much more complete as a
support technology. The result was the emergence of technology of support incorporating
multiple elements and multiple outcomes.
The daily application of positive behavior
support requires the application of multiple
422
Educative
When Carr and Durand (1985) dened functional
communication training and the design of interventions that competed with problem behavior,
there was an immediate recognition that too often
behavior support had missed the important role
of building adaptive skills. PBS includes teaching
adaptive skills, but through the use of FBA, these
skills include those positive behaviors that can
replace problem behaviors.
Individuals with challenging behaviors sometimes develop maladaptive behaviors; they possess a decient skill set for coping with their
contexts. One of the most signicant aspects of
PBS is instruction of new skills for navigating
current and future environments (Lee, Wood, &
Browder, 2015). Within a nonaversive approach
to behavior management, great attention is given
to directly teaching individuals prosocial, adaptive ways of obtaining the very outcomes that are
currently achieved through maladaptive, challenging behavior (Carr, 1988; Evans & Meyer,
1985; LaVigna & Donnellan, 1986).
To teach replacement behaviors, the behavioral function of the challenging behaviors must
15
423
424
Accountability
Similar to ABA, PBS is an empirical approach
that relies on valid and reliable data to support its
practices. Due in large part to its roots in behavior analysis, PBS has always advocated for high
accountability. This advocacy is most evident in
that PBS technology includes the collection and
use of publicly interpretable data as part of individual application (Dunlap et al., 2008).
This attention to accountability is evident in
the collection of functional assessment data. Data
collected on (a) the context and triggers that
covary with a problem behavior, (b) the intensity
duration and form of the problem behavior, and
(c) the events that follow (and presumably maintain) the problem behavior is extremely valuable.
This data allows for the development of hypotheses about when, where, and why the problem
behavior occurs, hypotheses that can be used to
devise effective and efcient interventions
(Horner & Carr, 1997).
Accountability is also exhibited in evaluation
systems. Evaluation systems include collection,
reporting, and use of data for decision making.
Sugai et al. (2010) noted that evaluation systems
are a critical component of behavior support.
Within the PBS technology, various data sources
(i.e., frequency of problem behavior, frequency
of replacement behavior) are collected through a
range of methods (i.e., archival review, interview,
direct observation) and involve multiple stakeholders (i.e., supported individual, family, educators, community members). The data collected
are analyzed to determine not only the individuals current level of functioning but also to identify the impact of the intervention on the target
behavior as well as improvements in the individuals quality of life. Effective evaluation systems
include regular structures for stakeholders to
meet, make decisions based upon data, and prioritize implementation items (i.e., action plan;
Todd et al., 2011). The incorporation of an evaluation system and regular data collection allows
for implementers to make timely programmatic
decisions based upon data and adjust support
plans accordingly (Sugai et al., 1999).
15
Safety
PBS is a practical technology with intended use
by typical intervention agents in typical settings.
Be that as it may, there will always be occurrences of problem behavior. Any ethical and
practical approach to support should plan for the
occurrence of behavior that has been performed
in the past. This results in clearly dened plans to
protect the safety of all involved. The caveat is
that safety procedures are not the plan but are part
of the plan.
There is an expressed need in PBS to distinguish emergency procedures from proactive programming. Any effective behavior support
technology for individuals with severe problem
behavior must include specic response strategies for relevant stakeholders (i.e., practitioners,
family). Problem behaviors such as self-injury,
aggression, property destruction, deance, tantrums, and disruption are highly prevalent among
children and adults with a variety of developmen-
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426
15
Employment
Contemporary conversations regarding PBS for
adults with developmental disabilities are incomplete without examining the relationship between
employment and quality of life (QOL). Dunlap
et al. (2010) identied and dened, with specicity, six domains of QOL including material wellbeing, health and safety, social well-being and
interpersonal condence, emotional/affective
well-being, leisure and recreation, and personal
well-being. An individuals employment status
has the potential to impact QOL domains in a
myriad of ways.
Employment increases opportunities for a person to have a social network. Relevant to the
QOL domain of social well-being and interpersonal condence, an employed person has more
opportunities for social interaction, thus enhancing capability for engaging in social relationships. The social interactions and social networks
that result from employment allow for individuals with developmental disabilities to develop
and enhance skills for communication, social
interplay, and behavioral adaptation in social
contexts. Social networks allow an individual to
feel a sense of belonging and to be a part of the
workplace culture and community life (Dunlap
et al., 2010; Mank, 2007). The alternative to
social networks is a diminished potential for
427
428
During the 1990s, research studies demonstrated the effectiveness of natural supports in the
workplace for people with developmental disabilities. Studies indicated the capacity for
coworkers and supervisors to serve as natural,
everyday supports. Other studies identied leadership qualities relative to employers hiring people with developmental disabilities. Taken
together, the studies substantiate that barriers to
employment are expected to be the result of funding and systems, as opposed to an individuals
assumed inability (Mank, 2007).
Other studies of the era exemplied that the
training and assistance provided to coworkers
and the attention given to placing individuals in
jobs that align with their interests, skills, and talents were positively related to a person with disabilities opportunities to earn higher wages and
be more fully integrated within the workplaces
social culture (Fillary & Pernice, 2006; Jordan de
Urries, Verdugo, Jenaro, Crespo, & Caballo,
2005; Mank, Ciof, & Yovanoff, 1998, 2000;
Nisbet & Callahan, 1987; Storey, 2002). The
evolving research on people with developmental
disabilities in the workplace continues to show
that people with developmental disabilities,
regardless of severity, can be productive both
independently and collaboratively, be supported
in the work environment, earn a signicant wage,
and be integrated into the environments social
network (Mank, 2007).
Families
For many individuals with developmental disabilities, the most reliable source of support
throughout life is the family unit (Kim &
Morningstar, 2005). Family support begins at an
early age and can profoundly impact a childs
development trajectory. The younger a child, the
less access they have to the level of social networks adults do. The family unit assumes a
greater distinction and importance when children
experience disabilities or display problem behaviors that limit the variety and depth of social
activities and interactions (Dunlap & Fox, 2009).
15
Early Intervention
For families of infants and toddlers with developmental disabilities, prominence is placed on
increasing and reinforcing parents capacity to
nurture their childrens development. In order to
429
430
15
431
432
15
behavior-based
foundation
accentuation
underscores a persons observable behavior as
being indicative of what he has learned and/or
how he has been conditioned to conduct himself.
As well, SWPBIS accepts that behavior is learned
and inuenced by environmental factors, thus
making it possible to identify when behavior is
likely to occur and what alternative behaviors can
be taught (Sugai & Horner, 2009).
Second, SWPBIS focuses on prevention. It is
this element that is both a hallmark of the
approach and a noteworthy distinguisher from
PBS technology for individuals. Within SWPBIS,
prevention is operationalized through the establishment of a continuum of behavior support and
intervention designed to prevent the development
of new problem behaviors, the triggering of current problem behavior, or the worsening of existing problem behavior (Sugai & Horner, 2009). To
efciently organize a continuum of support and
intervention for a large population such as a
school, SWPBIS borrows the three-tier prevention logic from community health and disease
prevention in which the primary tier provides
universal behavioral support for all students
across all settings, the secondary tier provides
more intensive behavioral support for students
whose behaviors were unresponsive to primarytier supports, and the tertiary tier provides intensive, individualized supports for students whose
behaviors were unresponsive to primary- or
secondary-tier supports (Kutash, Duchnowski, &
Lynn, 2006; Walker et al., 1996).
Third, SWPBIS is educative and includes both
instruction and intervention to enhance students
behavior skill repertoires. At the universal
primary-tier level, a small number (35) of positively stated core expectations are selected for the
entire school. These expectations (i.e., be safe, be
respectful, be responsible) serve as explicit, simple, and consistent rules for student behavior.
School staff explicitly dene each expectation in
regard to target behaviors for various school settings (i.e., cafeteria, playground, hallways, classroom). Dened expectations are then taught in
the applicable context/environment to students at
the beginning of the school year and reviewed at
key times throughout the year (Solomon et al.,
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434
15
435
Future of PBS
With ongoing advances in the conceptual and
procedural elements of PBS, we can expect
increased diversity in the array of implementation contexts. The eld of PBS is witnessing the
emergence of successful application in and with
school systems (Sugai & Simonsen, 2012) and in
school-based bully prevention (Ross & Horner,
2009), families (Binnendyk & Lucyshyn, 2009),
early childhood (Fox, Carta, Strain, Dunlap, &
Hemmeter, 2010), residential support, communities (Nelson, Jolivette, Leone, & Mathur, 2010),
juvenile justice systems (Gagnon & Barber,
2010), and mental health (Bradshaw et al., 2012).
Advances over the next decades will require
efforts to collaborate and integrate without
losing focus on the core features that dene
PBS. Currently, PBS advocates and developers are collaborating across disciplines in the
effort to improve the quality of life for young
persons at risk for or experiencing emotional
436
and behavioral challenges, as well as the quality of life for all youth. The elds of mental
health, juvenile justice, and early intervention
are working jointly, sharing unique knowledge
and insight, to develop the interconnected systems framework (ISF) to effectively link school
mental health (SMH) and positive behavioral
interventions and supports (PBIS). In doing so,
the strengths of each of the respective processes
can be leveraged and result in enhanced teaching
and learning environments.
It is worth noting that advancement, collaboration, and integration should not result in the
loss of core features. To sustain PBS, it is necessary to emphasize the conceptual logic and core
features that are related to behavior change.
Sustained development and implementation
depend upon PBS being conceptualized as a
problem-solving framework that embodies
research-based practices. In doing so, the essential elements and critical components of PBS
continue to endure while individual practices,
applications, populations, and contexts change.
As we look to the future, the work is not to
develop a new framework. Instead, it is about
perfecting and improving the systems, data, and
practices we currently used and doing so in alignment with the core features of PBS.
One such feature is the incorporation of environmental redesign to promote positive behavior.
It is necessary to examine applications of PBS
across individuals and settings to better understand future directions and potential. Applications
of PBS across school, home, and community settings illustrate the ability to adapt to context.
Future research directions include identifying the
features of effective environments. For families
and caregivers, how can the eld help in the effort
to avoid not just the development of self-injurious
behavior but also the emergence of depression,
deance, and social withdrawal? For community
mental health agencies, how can PBS aid in the
promotion of mental health and well-being? As
implementation is scaled up in schools and facilities, how can we create systems that simultaneously make more effective learning environments
and create settings where bullying, harassment,
and intimidation are not supported?
15
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16
Anne MacDonald
Introduction
Challenging behavior is prevalent in people with
intellectual disabilities (Emerson et al., 2001) and
has been demonstrated to have a number of negative effects on services, staff and service users
(Allen, 2009), including abuse (Emerson, McGill,
& Mansell, 1994), placement breakdown (Allen,
1989), and high staff turnover (Felce, Lowe, &
Beswick, 1993). Positive Behavior Support (PBS)
has been shown to be successful in addressing
issues of challenging behavior and of achieving
behavior change for individuals (Carr et al., 1999;
La Vigna & Willis, 2012; Lucyshyn, Horner,
Dunlap, Albin, & Ben, 2002). PBS is an approach
that has gained widespread acceptance over the
past 20 years as an effective and appropriate
response to challenging behavior in individuals
with intellectual disabilities (Carr et al., 1999;
Koegel, Koegel, & Dunlap, 1996; La Vigna &
Willis, 2012; Lucyshyn et al., 2002).
It came to the fore in the 1980s and 1990s, and
is widely regarded as emerging from the debate in
this period about the use of aversive techniques. In
this context, aversive techniques came to mean
more than the technical behavioral meaning of
aversive, but became synonymous with approaches
A. MacDonald (*)
The Richmond Fellowship Scotland,
3 Buchanan Gate, Glasgow G33 6FB, Scotland, UK
e-mail: amacdonald@trfs.org.uk
443
444
A. MacDonald
16
445
A. MacDonald
446
Model 1
The training model presented by Anderson et al.
(1993) and further described in Anderson, Russo,
Dunlap, and Albin (1996) proposed that PBS
training, because it required the transmission of a
new value base, as well as learning new skills and
processes in practice, had to reach beyond traditional brief training and must be delivered in a
specic way. They emphasized a case study
approach, which would allow implementation of
the learning through practical application in the
workplace. This longitudinal training had a focus
on long-term change in the persons life and
behavior. Rather than just reducing problem
behaviors, it aimed to teach the person new, more
adaptive behaviors in addition to introducing a
range of quality of life changes, designed to support them to live a fuller and more ordinary life in
the community.
Training Objectives
Anderson et al. (1993) noted the foundation of
PBS is that behavior changes occur in the context of a rich lifestyle, not as a prerequisite to a
rich lifestyle (p. 364), thus specifying at the outset a key feature of PBSthat lifestyle enhancement or quality of life approaches are not just an
outcome but are a technique; they are not an
optional extra, but an essential element of PBS.
They noted that training must be delivered in a
way that promotes generalization and maintenance, so that PBS skills learned can be used in a
variety of contexts over a period of time. Specic
objectives are to achieve positive impact on: (a)
lives of service users (improved lifestyles as well
as reduced behavior); (b) on skills and knowledge of staff (focus on proactive strategies, shift
from single to multi-component approaches, sees
behavior change in context of a good life, recognizes need for long-term support, not quick
xes); and (c) on agencies and systems (PBS to
be adopted into organizational policies; training
to be prioritized proactively rather than crisisled; resulting in exible support options for
individuals involving inter-agency and family
collaboration).
Training Format
Their description of how the training is to be
delivered is very detailed and strategic in its aim
to develop local expertise and to change systems.
This includes: (a) ensure sustainability and developing local expertise via a trainer for trainer
model, with good support to new trainers; (b) target multiple audiencestraining should be useful to a wide range of participants and should
seek to create systems of comprehensive support
across all of the individuals environment; (c) use
a case-study approach; (d) intersperse teaching
with supported application via longitudinal training which is combined with periods of practice in
the service setting, along with coaching and mentoring; (e) provide a comprehensive curriculum
(including values, functional analysis, PBS planning, skill building, reinforcement, emergency
management, evaluation and systems issues);
and (f) facilitate the development of PBS communities via ongoing implementation of PBS at a
local level, and multiple levels of training, dependent on roles.
Model 2
Dunlap and Hieneman (2000) rened and
extended the denition of PBS training and their
description of training objectives and format
have considerable overlap with that of Anderson
et al. (1993, 1996).
Training Objectives
These include: (a) building enduring capacity to
provide effective PBS; (b) lifestyle changes for
individuals with challenging behaviors; (c) systems change and enhancing systems to promote
PBS; and (d) collaborative working including
community building and networking.
Training Format
These include: (a) collaboration between multidisciplinary participants, all of whom are
involved in supporting the individual in a range
of settings; (b) case study formatparticipants
are brought together to apply their learning to an
16
Model 3
La Vigna, Christian, Liberman, Camacho, and
Willis (2002) outlined their intensive PBS training program based on a multi-element model
they had developed earlier (La Vigna et al., 1989;
La Vigna & Willis, 1996).
Training Objectives
The include; (a) to train participants to provide
competency-based assessment, including the
development of multi-element support plans,
designed to achieve valued outcomes in cost
effective ways; (b) to provide participants with
the skills, materials and procedures to continue
delivering PBS in their workplaces; (c) to teach
participants to use PBS interventions with consistency and accuracy, and to utilize ongoing
quality improvement systems; and (d) via the
training for participants to be able to support
individuals with intellectual disabilities and
severe challenging behaviors to integrate into
ordinary work and living; and to be able to
achieve durability and generalization of effect for
individuals.
Training Format
These include: (a) 2 weeks of intensive training
and practice; (b) hands-on implementation of
PBS, with supervised eld-based practice
assignments, practice exercises, writing assignments and feedback sessions; (c) carry out
functional analysis and develop multi-element
plans with both proactive and reactive strategies;
(d) implement person-centered, communitybased behavior analysis approaches; and (e)
learn about evaluation and ongoing quality
assurance systems.
447
Model 4
In addition to presenting the denition and development of PBS, Carr et al. (2002) also articulated
a vision for how it should continue to develop
and what PBS training should entail.
Training Objectives
These include; (a) training a range of stakeholders, not just professionals; (b) movement away
from expertsmore collaboration, with stakeholders and also between agencies; (c) not simply a transfer of information from expert to
provider, but involving capacity building and
leading to system change.
Training Format
These include: (a) creative use of technology;
(b) more on-site education and less use of lecture
format and formal training; (c) real-life problem
solving, in context, within sufcient time duration; (d) not based on a list of intervention techniques, but learning how to use interventions
within systems and how to integrate these with
broader infrastructures and networks.
From a review of the relevant literature, which
has described PBS training, it is suggested that
there are a number of dening aspects to PBS training which can be summarized into these four key
features:
Function-Based, with Multi-Element
Support Planning
PBS training teaches that all support strategies
must be based on functional assessment and an
understanding of why behavior occurs in specic
contexts and environments. This leads to a range
of proactive and reactive strategies, with the major
focus on proactive strategies. Within the proactive, there must be a focus on both stimulus-based
intervention (changing the physical and social
environment, e.g., manipulation of setting events)
and reinforcement-based interventions (addressing behavioral deciencies via skills teaching,
e.g., functional communication, and reinforcement
plans, which more strongly reinforce appropriate
behaviors than challenging behaviors).
448
A. MacDonald
Systems Changes
and Organizational Focus
PBS is a whole-systems approach and is most
effective when not seen in isolation from the rest
of the organization. Therefore, when introducing
PBS to a service or organization, it must reach
further than just behavioral changes. PBS training must address this issue, particularly if participants are to leave the training and implement
what they have learnt. This issue is so central to
PBS that Carr (2007) suggested the central
independent variable in PBS is systems change
(p. 4) and a range of other studies have shown
associations between implementing a wholesystem approach to PBS and improved outcomes
for service users both in terms of challenging
behavior and quality of life (Allen, 2011; Allen,
Kaye, Horwood, Gray, & Mines, 2012; Perry,
Felce, Allen, & Meek, 2011). Allen et al. (2013)
proposed that for PBS to be successful, behavioral intervention skills at the service user level
needs to be supplemented by organizational
changes in order to ensure whole system commitment and widespread implementation. La
Vigna, Willis, Shaull, Abedi, and Sweitzet
(1994) suggested a model for thisPeriodic
Service Reviewwhich is a quality assurance
system that can be used to support the implementation of PBS. A number of studies have
16
449
Attitudes
One study looked specically at staff attitudes.
Wardale, Davis, Carroll, et al. (2014) used the
Evidence Based Practice Attitude Scale (Aarons
et al., 2012), which evaluates attitudes towards
evidence-based practice. They found signicant
differences for 2 of the 12 subscales (i.e.,
Openness and Fit).
Year
1998
2003
2005
Author(s)
Bakera
Reid et al.b
Freeman et al.b
US
US
Country
US
Professionals
working in human
services with
bachelors degree
Supervisors of
direct care staff
Participants
Managerial and
direct care staff
from residential
and vocational
support unit
Service users on
whom training
was focused
Repeated measures
design; PBS experts
score BSP pre and
post training
Post training
evaluation of skill
Implementation
386
11
Repeated measures
within and between
groups design
Experimental 12
5 service users
Sample size
At least 16 staff
Paper exercise
evaluation (17
modules); role-play
evaluation (9
modules); and
on-the-job checks
(6 modules)
37-item PBS
Checklist (based on
Horner et al., 2000)
Observation of
role-play
demonstration of 2
supervisory skills
Outcome measures
FA and BSP were
reviewed against
critical elements
(4 for FA and 6 for
BSP)
Incident reports
None reported
Reliability
Coding was
checked for 50 %
of FA and BSP
(9396 %
agreement)
CB reliability
was assessed via
comparison with
house logs
(100 %
agreement)
Inter-observer
agreement checks
on 46 % of
observations
(95 % agreement)
None reported
85 % completed all
training and achieved
mastery level
Results
The number of FA
and BSP with at least
4 critical elements
signicantly
increased
In 2 months post
training, CB for 2
service users reduced
to 0; others reduced
to between 11 and
28 % of baseline
Pre-training 033 %
met criteria; post
training 100 %
450
A. MacDonald
2005
2005
2007
McClean et al.c
Dencha
McGill et al.b
UK
Ireland
Ireland
79
25 service users
Service users
focus person for
the course
University
Diploma students
38 staff
138
Students
undertaking the
course
Service users
whose staff were
on the training
course
Repeated measures
design;
questionnaires
completed at 3 time
points, beginning
middle and end of
course
Staff recording of
target behavior at
baseline and post
training; pre and
post questionnaire
re quality of life
Repeated measures
design; staff
recordings of target
behavior at 3 time
points, baseline,
intervention and
follow-up (between
4 and 8 week
periods)
Post training
assessment of FA
and BSP
Self-Injury
Questionnaire
(SIBUQ) (Oliver,
Hall, Hales, & Head,
1996); Challenging
Behavior Attributions
scale (CHABA)
(Hastings, 1997);
Emotional Reactions
to Challenging
Behavior scale
(ERCB) (Mitchell &
Hastings, 1998);
vignettes
Behavior
Assessment Report
and Intervention
Plan Evaluation
Instrument (Willis
& La Vigna, 1990)
Behavior
recordings; Quality
of Life
Questionnaire
(Schalock & Keith,
1993)
Behavior
recordings
5 % of data
repeated entry to
check reliability
(95 % agreement)
Independent
rating of
1523 % of
vignettes (91 %
agreement)
None reported
Inter-rater
reliability checks
for 1 week during
baseline only for
21 cases (92 %
agreement)
(continued)
CB reduced to less
than 30 % of
baseline within
3 months for 56 %;
questionnaire did not
demonstrate changes
in quality of life;
Knowledge
signicantly
increased; negative
emotional responses
reduced; SIBUQ
very signicant
increase of correct
attributions; CHABA
no change
Signicant
improvement in
77 %, at average
follow-up of
22 months
(3 months5.5 years)
16
Staff Training in Positive Behavior Support
451
UK
Ireland
2007
2007
Lowe et al.b
Grey and
McCleanc
Service users
whose staff were
on the training
course
Registered and
non-registered
staff in specialist
health services
60
275
Non-randomized
matched control
group, repeated
measures design;
CCB completed by
1 staff member pre
and post training;
staff completion of
behavior
observation records
for target group
only, pre and post
training
Repeated measures
design; self report
questionnaire and
knowledge test pre
and post training
and at 1 year
follow-up
Behavior
observation
recordings (target
group only);
Checklist for
Challenging
Behavior (CCB)
(Harris,
Humphreys, &
Thomson, 1994);
prescription of
psychotropic
medication
ERCB; CHABA;
Challenging
Behavior Staff
Perceptions
Questionnaire
(CBSPQ) (Hastings
& Brown, 2002);
Condence in
Coping with
Patient Aggression
(CCPA) (Thackery,
1987); knowledge
questions
43 % of CCB
were completed
by 2 staff to
check inter-rater
reliability
(correlation
co-efcient range
0.80.92)
Inter-assessor
reliability for
25 % (86 %
agreement)
Signicant increase
in knowledge for
both groups; initial
changes in
attributions after
training reverted to
baseline over time;
lasting increases
occurred in
condence for both
group; limited
impact on fear/
anxiety or
depression/anger
scale
Signicant
differences between
the groups posttraining in frequency,
management difcult
and severity of
behavior (on CCB)
For 66 % of the
target group the
frequency of CB
reduced to below
30 % of baseline
after 3 months post
implementation
(behavior recordings)
No signicant
reduction in units of
medication
prescribed for either
group
452
A. MacDonald
UK
Canada
Ireland
2011
2011
2012
Gore and
Umizawaa
d
see note
below
Reynolds
et al.c
d
see note
below
McClean and
Greyc
Service users
whose staff were
on the training
course
Children whose
parents and staff
attended training
Teaching staff
61
33
37 children
33 staff
Repeated measures
design; 3 data
collection points
baseline, post
training and
follow-up (average
26 month
follow-up)
Repeated measures
design, pre and post
training
Repeated measures
design; all measures
completed by
participants pre and
post training; CCB
post data collection
was 1 month after
training
Challenging
Behavior Rating
Scale (CBRS)
(based on Checklist
for Challenging
Behavior, Harris
et al., 1994);
behavior
recordings
Aberrant Behavior
Checklist (ABC)
(Aman & Singh,
1986)
CHABA; ERCB;
CCB
CBRS completed
by 2 staff at
baseline and post
training
(Pearsons
correlation
coefcient range
0.80.9)
None reported
None reported
(continued)
Signicant reduction
in frequency,
management
difculty and
severity in the
CBRS; behavior
records showed an
average decrease of
61 % at 3 months
CHABAno
signicant
differences;
ERCBsignicant
decrease on fear/
anxiety scale, no
other signicant
differences
CCB1 month after
training signicant
decrease in
frequency but not in
severity or
management
difculty for staff
(difference between
staff and family carer
results)
Signicant
improvements
reported by staff in
the total ABC score
16
Staff Training in Positive Behavior Support
453
2012
2013
Crates and
Spicera
Wills et al.b
UK
Australia
Professionals
working in
disability services
and the service
users that they
completed the
training for
38
32 service users
32 staff
Repeated measures
design, pre and post
training
Post training
evaluation of
assessment;
repeated measures
design for behavior;
2 data collection
pointsbaseline
and 3 months
post-training
Revised Causal
Dimension Scale II
(McAuley, Duncan,
& Russell, 1992);
Helping Behavior
Scale (Jones &
Hastings, 2003);
emotional
responses to
challenging
behavior
questionnaire
(based on Rose &
Rose, 2005);
Optimism
Pessimism Scale
(Mores & Grant,
1976); PBS
multiple choice
questionnaire
Assessment and
Intervention Plan
Evaluation
Instrument (AIEI)
(La Vigna,
Christian, et al.,
2005)
None reported
Inter-rater
reliability checks
for marking of
62 % of
reports85 %;
mean reliability
for behavior
occurrence and
severity was at
least 84 %
454
A. MacDonald
2014
Wardale et al.b
Australia
Australia
Health
professionals;
direct support
workers;
managers; team
leaders
234
Repeated measures
design, pre and post
training, except for
BSP-QE only used
post training
Repeated measures
design, pre and post
training, except for
BSP-QE only used
post training
Knowledge
acquisition test
(based on ONeill
et al., 1997);
CHABA; Evidence
Based Practice
Attitude Scale
(EBPAS-50)
(Aarons, Cafri,
Lugo, & Sawitzky,
2012); Behavior
Support Plan
Quality Evaluation
Guide (BSP-QE)
(Browning-Wright,
Mayer, & Saren,
2003) used to score
each BSP
Knowledge
acquisition test
(based on ONeill
et al., 1997);
BSP-QE
None reported
None reported
Participant
knowledge increased
(signicance not
reported);
participants produced
PBS plans with
scores of 1820
(good)
Signicant increase
in PBS knowledge;
signicant
differences for all
CHABA subscales
except for
Emotional;
signicant
differences for 2 of
the EBPAS-50
subscales (Openness
and Fit increased);
participants produced
PBS plans with mean
score of 13.73
2014
Wardale et al.b
16
Staff Training in Positive Behavior Support
455
Dench (2005)
Study
Baker (1998)
AS; PBS
Content
Completing FA; developing and implementing Behavior
Support Plan (BSP) for focus person
Experimental: 2 modules (teaching staff a PBS-related skill
and carrying out a staff observation)
Implementation: Skills related to PBS; 26 module curriculum
456
A. MacDonald
Optimism
Skills
Emotional responses to challenging behavior questionnaire (based on Rose & Rose, 2005)
Helping Behavior Scale (Jones & Hastings, 2003)
Knowledge-based questionnaire
Outcome measures
Evidence Based Practice Attitude Scale (Aarons et al., 2012)
Challenging Behavior Attributions questionnaire (CHABA) (Hastings, 1997)
Helping
Knowledge
Emotions
Condence
Variable measured
Attitudes
Attributions
Studies reporting
Wardale, Davis, Carroll, et al. (2014)
Lowe et al. (2007), McGill et al. (2007),
Gore and Umizawa (2011), Wardale, Davis,
Carroll, et al. (2014)
Wills et al. (2013)
Lowe et al. (2007)
Lowe et al. (2007)
16
Staff Training in Positive Behavior Support
457
458
Attributions
Five studies considered changes in attributions,
four of these using the CHABA (Hastings, 1997).
Lowe et al. (2007) reported initial changes in
attribution after training reverted to baseline
over time, and McGill et al. (2007) found varied
change across measures. Gore and Umizawa
(2011) found no signicant differences, and
Wardale, Davis, Carroll, et al. (2014) found signicant differences for all the subscales except
Emotional. Wills et al. (2013) used the Revised
Causal Dimension Scale II (McAuley et al.,
1992) and adapted this to refer to a case study
describing a service user with intellectual disabilities and challenging behavior. They reported
little change in mean scores on the internality and
stability dimensions, but the mean controllability
score decreased signicantly.
Condence
Lowe et al. (2007) measured condence via the
CCPA (Thackery, 1987) and also used the CBSPQ
(Hastings & Brown, 2002). Both of these studies
reported signicant increases in condence.
Emotions
Four studies looked at this area, three of them utilizing the ERCB (Mitchell & Hastings, 1998).
Lowe et al. (2007) reported little lasting effect
on emotions, McGill et al. (2007) reported that
Depression/Anger scores were signicantly
reduced, and Gore and Umizawa (2011) found a
signicant decrease in the Fear/Anxiety scores.
Wills et al. (2013) also considered emotions
using a questionnaire based on Rose and Rose
(2005). Following training, negative emotions
reduced by one point on the scale and empathy
increased by nearly one point. There was little
change in mean scores of positive emotion.
Helping
One study (Wills et al., 2013) evaluated changes
in helping behavior from staff, using the Helping
Behavior Scale (Jones & Hastings, 2003), which
looks at the help offered by staff to service users
engaging in self-injurious behavior. This was
adapted to include help in relation to aggressive
A. MacDonald
Knowledge
This was measured in a number of different
ways in different studies. Four studies used a
PBS knowledge questionnaire. Lowe et al. (2007)
used a questionnaire based on the course work
that covered policy, PBS strategies, PCP and
Active Support. This study demonstrated signicant increases in knowledge, both immediately
after the training and over time. Wills et al. (2013)
used a multiple choice questionnaire and found
signicant increase in knowledge, and Wardale
et al. (Wardale, Davis, Carroll, et al., 2014;
Wardale, Davis, & Dalton, 2014) used a test
based on ONeill et al. (1997). They noted an
increase in scores although they did not report
signicance gures. McGill et al. (2007) used the
SIBUQ (Oliver et al., 1996) and showed a highly
signicant increase in correct attributions,
demonstrating increased knowledge regarding
self-injury. This study also used vignettes on
behavioral function, where responses are rated as
correct, partially correct or incorrect. At posttraining, the trainees demonstrated more correct
analysis with regard to the scenario with an attention function, but not with the escape/avoidance
function.
Optimism
One study considered changes in staff optimism,
using the Optimism Pessimism Scale (Mores &
Grant, 1976), which measures how optimistic
staff are about the possibility of reducing a service users likelihood of engaging in challenging
behavior. Wills et al. (2013) found a signicant
increase in optimism following training.
Skills
There are a number of different ways of assessing
skills gained in PBS. The most common method
used in extant studies was production and/or
evaluation of functional assessments (FA) or
behavior support plans (BSP). Baker (1998)
reported on FA and BSP that were produced
16
459
Frequency of Behavior
Five studies used real-time behavior recordings.
Baker (1998) found that in the 2 months post training, challenging behavior for two service users
reduced to zero and for the other three reduced
to 1128 % of baseline. McClean et al. (2005)
A. MacDonald
460
Table 16.4 Service user outcome measures
Variable measured
Frequency of behavior
Outcome measures
Service incident reports
Behavior recordings
Severity of behavior
Severity of Behavior
Two studies reported specically on severity outcomes. Reynolds et al. (2011) used the Aberrant
Behavior Checklist (Aman & Singh, 1986)
and reported signicant decrease in the staff scores
for this measure. Crates and Spicer (2012)
described the use of an episodic severity measure
(La Vigna & Willis, et al., 2005b), which was based
on the real-time behavior recording, and reported a
mean reduction to 30.8 % of the baseline.
Frequency, Severity and Management
Difculty of Behavior
Three studies used the Checklist for Challenging
Behavior (CCB) (Harris et al., 1994) which
allows for separate scoring on each of these three
elements of behavioral measurement. Using this
measure, Grey and McClean (2007) reported
signicant differences between treatment
and control group in all three areas. Gore and
Umizawa (2011) reported a signicant decrease
Studies reporting
Baker (1998)
McClean et al. (2005), Dench (2005),
McClean and Grey (2012), Crates
and Spicer (2012)
Reynolds et al. (2011)
Grey and McClean (2007), Gore and
Umizawa (2011), McClean and Grey
(2012)
Dench (2005)
Quality of Life
Only one study considered the impact of PBS
training on the quality of life of service users
(Dench, 2005), as rated on the Quality of Life
Questionnaire (Schalock & Keith, 1993), but
reported no changes.
16
461
462
Practice Recommendations
There are a number of implications for research
and practice arising from this discussion of PBS
training. In terms of looking to the future, there is
a need to be creative and innovative in how training is delivered, both to maximize resources and
to achieve the coverage of training needed. Use
of information technology, e-learning, and video
training are measures which have demonstrated
some element of success (Macurik, OKane,
Malanga, & Reid, 2008; Sailor et al., 2000) and
may be useful in this context. Further exploration
of their use in relation to PBS training would be
appropriate.
In addition to creative use of technology, coverage could also be increased by utilizing a
training-for-trainers model. Crates and Spicer
(2012) demonstrated that second generation
training could be as effective as that delivered
A. MacDonald
16
463
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17
Parent Training
Laura Lee McIntyre and Cameron L. Neece
Introduction
More than 1.5 million children in the USA are
estimated to have an intellectual and developmental disability (IDD; Batshaw, Shapiro, &
Farber, 2007; Federal Interagency Forum on
Child & Family Statistics, 2009). Children with
ID are at risk for a variety of poor outcomes, in
part because they have cognitive, social, and language decits (Dosen & Day, 2001). This risk is
exacerbated when there is a concomitant behavior problem or mental health disorder (Reiss,
1994). Epidemiological studies suggest a high
prevalence of dual diagnosis of ID and behavior/
mental health disorder, occurring at a frequency
ranging from 10 to 70 %, with most estimates
between 30 and 45 % (Emerson, 2003; Nezu,
Nezu, & Gill-Weiss, 1992). Thus, more than
500,000 American children have this dual diagnosis. Children and adolescents with ID are
nearly 34 times more likely to have a diagnosable behavior/mental health disorder than are
467
468
17 Parent Training
469
Mindfulness-Based Approaches
Although behavioral parent training emphasizes
the acquisition of parenting skills that are linked
to child behavioral outcomes, mindfulness-based
strategies directly target stress that may be associated with the presence of child problem behavior (Bazzano et al., 2015; Dykens et al., 2014;
Minor et al., 2006; Neece, 2014; Singh, Lancioni,
et al., 2006). Given the bidirectional relation
between parental stress and child problem behavior (Neece et al., 2012), it is logical to consider
interventions that target the reduction of parental
stress in terms of their impact on child behavioral
outcomes. Surprisingly, although parenting stress
has been shown to be an important predictor of
several child outcomes, it is rarely directly
addressed in interventions that target child behavior problems. This is concerning not only because
parental stress has been shown to affect the
development of childrens emotional and behavior problems over time, but also because parenting stress has been associated with poor outcomes
for interventions focused on children with ID and
other developmental disabilities. More specically, high parental stress predicts less benecial
outcomes for children in early intervention
programs (Brinker, Seifer, & Sameroff, 1994;
Osborne, McHugh, Saunders, & Reed, 2008;
Robbins, Dunlap, & Plienis, 1991; Strauss et al.,
2012) and fewer gains in parenting skills in
behavioral parenting training interventions (e.g.,
Baker, Landen, & Kashima, 1991).
Two types of mindfulness-based interventions
have been used primarily with parents of children
with ID. First is MBSR, which is an evidencebased stress-reduction intervention program supported by more than two decades of extensive
research that has revealed its effectiveness for
470
17 Parent Training
Self-Administered Programs
Self-administered parent training may offer an
accessible intervention format for many families,
especially for those who have difculty participating through traditional means. By providing
parents with literature, audio/visual material, or
computer-delivered information, this mode of
delivery requires little to no contact between
the professional and parent. Self-administered
intervention has been shown by some to be as
effective as therapist-directed programs (MarkieDadds & Sanders, 2006; Nicholson & Sanders,
1999). Webster-Stratton, Kolpacoff, and
Hollingsworth (1988), on the other hand, found
this mode of intervention delivery to be less
effective in comparison with a group discussion
videotape modeling program. In a follow-up
study, Webster-Stratton (1999) recognized the
importance of giving families access to more
cost-effective programs and sought to determine
which participant variables were associated with
positive outcomes in self-administered programs.
471
Group-Based Programs
Being involved in a group format enables families to receive more therapist attention than
they would receive in a self-administered format.
Although group-based programs require more
resources to implement, they are still more cost
efcient than individually delivered interventions. Several group parent training programs
have been designed to promote parent competencies and to address and/or prevent conduct problems (see reviews: Brestan & Eyberg, 1998;
Webster-Stratton & Taylor, 2001). Similarly,
mindfulness interventions are most commonly
delivered in a group-based format, and groupbased interventions, such as Mindfulness-Based
Stress Reduction (MBSR) and MindfulnessBased Cognitive Therapy (MBCT), have the
most empirical support (Chiesa & Serretti, 2009,
2011; Grossman, Niemann, Schmidt, & Walach,
2004; Piet & Hougaard, 2011). A collateral benet of group programs is the support and kinship
available from other participants, which may
increase parental engagement with the intervention and with their childs early education
program. Greater parental engagement is an
important benet of group formats, especially for
472
those who may be socially isolated (e.g., lowincome single mothers) with little support
and few friendships (Dumas & Wahler, 1983).
Although group-based parent training programs
have many advantages, not every family benets
from this approach (Webster-Stratton &
Hammond, 1997). Individually administered parent training allows participants to receive the
most intensive, exible, and individualized
support.
Target group
Caregivers and their
4-to 13-year-old
children with PDD
and elevated behavior
problems
Study
Aman et al. (2009)
Attrition: 47 %
Wait-list control
(WL)
Parentchild
Interaction Therapy
(PCIT)
Immediate
treatment (IT)
n = 15 wait-list
n = 15 Immediate
treatment
Behavioral Parent
Training
N = 30
Attrition: 24 %
n = 49 MED
RUPP Parent
Training
Combined
treatment (COMB)
of individual parent
training plus
resperidone
Medication alone
(MED)
Intervention
Behavioral Parent
Training
n = 75 COMB
Sample size
N = 124
Blinded
evaluation
ITT analysis
Reliable
change index
(RCI) analysis
Treatment
integrity
reported
4-month
follow-up
Treatment
integrity
reported
Randomized
wait-list
control trial
Intent to treat
(ITT) analysis
Design/approach
Randomized
controlled trial
Consumer
satisfaction
Parent-reported
parenting stress
Observed parent
and child behavior
Parent-reported
behavior problems
Observed
improvement on
the
Parent-reported
maladaptive
behavior
Dependent variables
Parent-reported
child compliance
Table 17.1 Behavioral parent training and mindfulness-based studies for child challenging behavior in children with ID 20052014
Less parent-reported
maladaptive behavior
More observed
positive parenting
Less reported
problem behavior
(continued)
Less reported
parenting stress
High consumer
satisfaction with PCIT
treatment
No difference on
clinical impressions of
symptoms
Relative to WL group, the
IT had:
Key outcomes
Relative to MED
group, COMB group
had:
More parent-reported
child compliance
Parents of 2-to
18-year-old children
with ID and
challenging behavior
Bagner, Pettit,
Lewinsohn, and
Seeley (2010)
Hudson, Cameron,
and Matthews (2008)
Attrition: 21 %
Self-directed
Telephone
Group
Individual
n = 1675 group
n = 303
individual
Attrition:
58 % prepost
87 %
pre-follow-up
n = 119
telephone
n = 22
self-directed
Behavioral Parent
Training
Signposts for
Building Better
Behaviour program
4 levels:
n = 14 wait-list
N = 2119
Parentchild
Interaction Therapy
(PCIT)
Immediate
treatment (IT)
n = 14 Immediate
treatment
Wait-list control
(WL)
Behavioral Parent
Training
N = 28
Randomized
wait-list
control trial
Intent to treat
(ITT) analysis
No treatment
integrity
reported
Wide-scale
implementation trial
3-month
follow-up
No control
group
Group design
Reliable
change index
(RCI) analysis
Treatment
integrity
reported
4-month
follow-up
Parent-reported
parenting stress
Parent-reported
parenting styles
Observed parent
and child behavior
Parent-reported
behavior problems
Consumer
satisfaction
Parent-reported
parenting hassles
Parent-reported
mental health
Parent-reported
behavior problems
Parent-reported
competence
Less reported
parenting stress
Less reported
problem behavior
Less stress,
depression, and
anxiety
More competence
and satisfaction in
parenting
Less parenting hassle
Parents of 2-to
11-year-old children
with a range of
neurodevel-opmental
disorders and
challenging behavior
involved in social
services
Parents of 2- to
5-year-old children
with ID, including
ASD
McIntyre (2008a)
Attrition: 11 %
N = 25
Attrition: 31 %
N = 128
No control
group
Group design
Parentchild
interaction
observations
scored by
coders nave
to study goals
Treatment
integrity
reported
RCI analysis
Analysis of
correlates of
change
Group-based
intervention
Group design
No control
group
No treatment
integrity
reported
Behavioral Parent
Training
Incredible Years
Parent Training
DD Modications
Behavioral Parent
Training
Incredible Years
Parent Training
Group-based
intervention
Parent-reported
impact of the child
on family
Parent-reported
depression
Consumer
satisfaction
Parent-reported
behavior problems
Observed
parentchild
interactions
Parent-reported
behavior problems
Visual analogue
scales
(continued)
No signicant
changes in parentreported behavior
problems, child
negative impact, or
maternal depression
Decreases in
observed child
problem behavior and
negative parenting
Increase in parentreported positive
impact of the child
Postintervention:
Postintervention, parents
reported:
Decreased problem
behavior
Parents of 2-to
5-year-old children
with ID, including
ASD
Parents of 2-to
5-year-old children
with ID, including
ASD
McIntyre (2008b)
Neece (2014)
Group-based
intervention
n = 24 IYPT-DD
n = 25 usual care
control
Mindfulness-Based
Stress Reduction
(MBSR)
Group-based
intervention
n = 21 MBSR
n = 25 wait-list
control
Attrition: 9 %
Mindfulness-based
N = 46
Attrition: 10 %
Behavioral Parent
Training
Incredible Years
Parent Training
DD Modications
(IYPT-DD)
N = 49
Random
assignment
No treatment
integrity data
reported
Treatment
integrity
reported
Randomized,
controlled trial
Blinded
evaluation
Parent-reported
impact of the child
on family
Parent-reported
behavior problems
Observed
parentchild
interactions
Parent-reported
depression
Parent-reported
satisfaction with
life
Parent-reported
child problem
behavior
Parent-reported
subjective units of
distress
Parent-reported
stress
Parent-reported
impact of the child
on family
No treatment effect
on internalizing or
externalizing problem
behaviors
Postintervention, children
in IYPT-DD group showed
Reductions in
observed problem
behavior and
parent-reported
problem behavior
Reductions in
observed negative
parenting
No treatment effect
on parent-reported
impact of the child on
family
Postintervention, children
in MBSR group showed
Reduction in
parent-reported
ADHD
symptomatology
Reductions in
parent-reported stress
and depression
Increase in life
satisfaction
Parents of 2- to
4-year-old children
with IDD, including
ASD
Phaneuf and
McIntyre (2011)
Attrition: 0 %
Self-administered
Group-based
program
(IYPT-DD)
Individual sessions
with video
feedback and
modeling
Attrition: 25 %
pre-follow-up
Three-tier model of
interventions based
on the Incredible
Years
Behavioral Parent
Training
Parent Training
with Smaller
Groups and Shorter
Schedules (PTSS)
Group-based
intervention
Behavioral Parent
Training
N=8
N = 14
No control
group
Group design
Used parents
response to
intervention to
inform
treatment
3-month
follow-up
Treatment
integrity
reported
Treatment
integrity
monitored but
no data
reported
Single-case
design
Observed
parenting behavior
Consumer
satisfaction
Parent-reported
child behavior
problems
Observed child
problem behavior
Parent-reported
child problem
behavior
Parental
condence
Decrease in
parent-reported
behavior
Increase in parent
condence for
handling childs
challenging behavior
(continued)
Decreased observed
negative parenting
behavior
RUPP Autism
Network (2007)
Attrition: 17.6 %
N = 17
Attrition: 10 %
All children
were receiving
medication for
irritability,
tantrums,
aggression, and
self-injury
Behavioral Parent
Training
RUPP Parent
Training
n = 26 SSTP-S
Stepping Stones
Triple P Standard
version (SSTP-S)
and SSTP
Enhanced
(SSTP-E)
Individualized
sessions
n = 24 SSTP-E
n = 24 wait-list
Behavioral Parent
Training
N = 74
RCI analysis
Coders blind
to intervention
condition
Randomized,
controlled trial
Treatment
integrity
reported
No control
group
Group design
Treatment
integrity data
reported
1-year
follow-up
Parenting
competence
Parental
depression and
anxiety
Marital quality
Consumer
satisfaction
Parent-reported child
noncompliance
Parent-reported
maladaptive
behavior
Observed
improvement on
the scale
Adaptive behavior
Parenting skills
and ability
Caregiving
problems
Parentchild
interactions
Parent-reported
child behavior
Basic language
and learning
Parenting stress
Parent satisfaction
questionnaire
Improvements in
satisfaction parenting
role
Reductions in
parent-reported rates
of noncompliance
Reductions in
parent-reported rates
of irritability
Increases in daily
living skills
Reeducations in
parenting stress
Reductions in the
number of caregiving
settings with child
problem behavior
Improvements in
parental competence
Singh, Lancioni,
et al. (2006)
N = 3 mother
child dyads
Mindfulness
training
Individual sessions
Individual sessions
Mindfulness
training
Single-subject
experimental
design
No treatment
integrity data
Multiple
baseline
across
motherchild
dyads
12-month
follow-up
No treatment
integrity data
Single-subject
experimental
design
Multiple
baseline
across
motherchild
dyads
12-month
follow-up
Parent-observed
child social
interactions with
siblings
Subjective units of
parenting
satisfaction
Subjective units of
use of mindfulness
Parent-reported
parenting stress
Parent-observed
aggression
Subjective units of
use of mindfulness
Subjective units of
parenting
satisfaction
Parent-observed
aggression,
noncompliance,
and self-injury
Increase in interaction
satisfaction
Increase in use of
mindfulness
Decrease in parenting
stress
(continued)
Increase in parenting
satisfaction
Reduction in
parent-observed child
aggression
Increase in parentobserved child social
interactions with
siblings
Increase in interaction
satisfaction
Reduction in
parent-observed child
noncompliance,
aggression, and
self-injury
Increase in parenting
satisfaction
Stepping Stones
Triple P (SSTP)
Partial-group
format (group and
individual sessions)
n = 29 SSTP
n = 30 wait-list
Attrition: 11 %
Behavioral Parent
Training
N = 59
Parents of 2-to
9-year-old children
with ASD and
challenging behavior
Individual sessions
Whittingham,
Sofronoff, Shefeld,
and Sanders (2009)
Mindfulness
training with
positive behavior
support
N = 3 mother
adolescent dyads
Mothers of
adolescents with ASD
and challenging
behavior
No treatment
integrity data
6-month
follow-up
Multiple
baseline
across
mother
adolescent
dyads
12 month
follow-up
Treatment
integrity
reported
Randomized
wait-list
control trial
RCI analysis
Single-subject
experimental
design
Parent-observed
aggression,
disruptive
behavior, and
compliance
Parent-perceived
stress scale
Parent-reported
child behavior
problems
Parent-reported
parenting styles
Parenting
satisfaction and
efcacy
Decrease in
parent-reported
perceived stress
Reduction in
parent-observed
adolescent problem
behavior
Relative to WL control
participants, children in
SSTP group had:
Decreased parentreported behaviors
Decreased
dysfunctional
parenting
Increased parenting
self-efcacy at
follow-up
17 Parent Training
Incredible Years
Webster-Stratton and colleagues have developed
a parent training program, the Incredible Years
Parent Training series, that has been demonstrated to be more effective than control treatments in six randomized trials and in ve
independent replication studies (WebsterStratton, 1984, 1994, 2000) for reducing childrens maladaptive behavior and increasing
parents adaptive parenting skills in families of
children with or at risk for behavior problems
(without ID). Webster-Strattons parent training
series uses videotape modeling, role-playing,
rehearsal, and weekly homework activities in
small groups of 814 parents (see WebsterStratton, 2000, for a review). In addition to targeting clinical samples of children with conduct
problems, Webster-Stratton and colleagues have
used Incredible Years Parent Training with families who have children at risk for adverse academic/socio/behavioral outcomes attributable in
part to their poverty status (Gross et al., 2003;
Webster-Stratton, Reid, & Hammond, 2001).
Webster-Stratton has also added teacher and
child skill-building components to her training
series, which makes the model not only an efcacious treatment for children with conduct problems, but also a useful prevention technique for
high-risk children and families. The Division 12
(clinical psychology) task force of the American
Psychological Association deemed WebsterStrattons Incredible Years series to be one of
two well-established psychosocial treatments for
childhood conduct problems (Brestan & Eyberg,
1998) on the basis of effect sizes, sampling,
methodology, treatment integrity, and a host of
other criteria (Lonigan, Elbert, & Johnson, 1998).
Four studies (Kleve et al., 2011; McIntyre,
2008a, 2008b; Phaneuf & McIntyre, 2011)
investigated the effects of Webster-Strattons
Incredible Years Parent Training program (IYPT;
Webster-Stratton, 2001) on challenging behavior
in children with ID. McIntyre (2008a, 2008b;
Phaneuf & McIntyre, 2011) used an adapted version of the Incredible Years for use with parents
of children with developmental disabilities
(IYPT-DD; McIntyre, 2008a). IYPT is an
evidence-based parent training program based
481
482
17 Parent Training
483
484
Mindfulness Training
Four studies reported about the effects of mindfulness training to decrease challenging behavior
in children with autism and developmental disabilities (Neece, 2014; Singh et al., 2007, 2014;
Singh, Lancioni, et al., 2006). Singh and colleagues mindfulness training focused on teaching parents to have a clear, calm mind that is
focused on the present moment in a nonjudgmental way (Singh et al., 2007, p. 752). Mindfulness
training was individually provided to parents in
12 two-hour sessions. The book Everyday
Blessings: The Inner Work of Mindful Parenting
(M. Kabat-Zinn & Kabat-Zinn, 1997) supplemented weekly topics covered in sessions. The
12 weekly topics included a general introduction
to mindful parenting, knowing your mind,
focused attention, focused attention on arousal
states, being present in the moment, beginners
mind, being with your child, nonjudgmental
acceptance, letting go, loving kindness, problem
solving, and using mindfulness in daily interactions (Singh et al., 2007). Neece (2014) evaluated
the efcacy of MBSR for reducing parental stress
and subsequent behavior problems. Results
found MBSR to be efcacious for reducing overall parenting stress in parents of children with
developmental delays in that parents who participated in this study reported signicantly less
stress and depression and greater life satisfaction
than did waitlist-control parents. Children whose
parents participated in MBSR were reported to
have fewer behavior problems following the
17 Parent Training
485
486
Practice Recommendations
We offer several recommendations for practice.
These recommendations are organized under
the general categories of: (a) evidence-based
approaches; (b) prevention and early intervention; (c) comorbidities; (d) family participation
and engagement; and (e) logistics.
Evidence-Based Approaches
There is a robust literature supporting the use
of behavioral parent training approaches and
a growing literature supporting the use of
mindfulness-based parent training interventions
to reduce challenging behavior of children with
ID. Thus, we suggest that clinicians select interventions that are based on the extant literature
rather than developing idiosyncratic, home
grown approaches. Although there are still gaps
in our understanding of basic mechanisms of
these interventions and intervention moderators
(e.g., under what circumstances and for whom
do the interventions work most effectively?),
we have important foundational knowledge to
inform the selection of interventions. Thus, we
suggest that clinicians should select parent
training interventions that are either behavioral
in nature or based on mindfulness principles
when targeting the reduction of challenging
behavior in children with ID or ASD. We suggest
that valuable resources be used to implement
interventions with a track record of
effectiveness.
Comorbidities
Children with intellectual and developmental disabilities are more likely than typically developing children to have behavioral or psychiatric
problems (e.g., Emerson, 2003). Further, children
with ID are more likely to have medical, sensory,
or physical limitations. Thus, careful attention
should be paid to the unique support needs of
participants. What may seem like a routine
behavioral problem may be a manifestation of an
undiagnosed medical or health problem.
In addition to the increased likelihood of child
comorbid condition, parents of children with ID
may be at risk for heighted stress (e.g., Woodman,
Mawdsley, & Hauser-Cram, 2015), depression
(e.g., Olsson & Hwang, 2001); poor health (e.g.,
Murphy, Christian, Caplin, & Young, 2007), and
17 Parent Training
Logistics
Our nal recommendations focus on important
logistical considerations for carrying out successful
parent training interventions. These recommendations are based on our collective experience conducting parent training interventions for parents of
children with developmental delays and disabilities. Clinicians may wish to consider a variety of
locations for parent training interventions including family homes, schools, clinics, and community
venues (e.g., churches, community centers).
University-based clinics are not always easy for
487
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18
Social Skills
Laci Watkins, Michelle Kuhn, Mark F. OReilly,
Russell Lang, Jeff Sigafoos, and Giulio E. Lancioni
J. Sigafoos
School of Educational Psychology, Victoria
University of Wellington, Wellington, New Zealand
R. Lang
Department of Curriculum and Instruction,
Texas State University, San Marcos, TX, USA
G.E. Lancioni
Department of Neuroscience and Sense Organs,
University of Bari, Bari, Italy
Introduction
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ment is socially mediated. An infant crying simply to be picked up, a parent holding out his arms
and encouraging a child to take her rst steps
toward him, a toddler telling his mother, look
and pointing to the sky as an airplane ies above
are all examples of common early social experiences. For some children however, these natural
social interactions may be more challenging to
navigate, and direct interventions need to be in
place in order to teach these skills.
When considering these direct interventions it
is important to note that unlike later years in life,
the natural environment for children under the
age of three is generally the home. Parents oftentimes have to be both the caregiver, and also the
instructor, interventionist, and problem solver for
their child. This means that the childs social
world often revolves around the parent. For this
reason, it is imperative that professionals help
parents to recognize decits in social interaction
and to train them in strategies to elicit appropriate
social responses from their child.
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social engagement including initiating and responding to joint attention, as we all as the general ability
to engage with others during an activity. One study
focusing on these outcomes was conducted by
Kasari, Gulsrud, Wong, Kwon, and Locke (2010),
and used a randomized controlled trial in order to
nd variations in joint engagement between toddlers whose parents are trained in intervention procedures compared to those on a waitlist. In this
study, random numbers were used to assign families
to a wait list or intervention group with no signicant differences between these groups found prior
to intervention.
The intervention group, which consisted of 19
toddlers ranging in age from 21 to 36 months with
validated ASD diagnoses, and their caregivers,
received 24 sessions of targeted intervention training. During these sessions, parents were trained
through use of direct instruction, modeling, and
guided practice to follow the childs lead and interest in activities, imitate their childs actions, talk
about what their child is doing, expand on what
their child says, give corrective feedback, sit in
close proximity to their child and make eye contact,
and make environmental adjustments to engage
their child. Sessions were video recorded prior to
the study, at the start of the training intervention, at
the completion of the training intervention, and at a
12-month follow up visit. Reviewers blind to both
the group status and point in time coded primary
outcomes, including engagement states and joint
attention, in time of video. Joint engagement was
dened as child and partner actively involved with
the same object or event with the child showing
awareness of the parent or coordinating their attention between the parent and event.
Results indicated that the intervention group
engaged in signicantly more joint engagement
and responsiveness to joint attention at the end of
the intervention than the wait list group. These
results maintained at the 1 year follow up.
Initiations of joint attention however were not
found to be signicantly higher for the intervention group than for the wait list group. So while
the results indicate that training parents in key
intervention strategies can assist with increasing
joint engagement and responses, it suggests that
more needs to be done to specically increase
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18
Social Skills
Practice Recommendations
The focus of intervention in the early years is primarily on parent training, but it is important to
know key overarching components of teaching
social interaction skills to children under the age
of three, regardless of the intervention agent. The
above examples have some commonalities that
are to be noted as main mechanisms in the teaching of these skills.
Following the childs lead is an important
strategy in order to begin with the childs interest
in an already engaging moment (Kasari et al.,
2010; Schertz & Odom, 2007; Vismara & Lyons,
2007). This strategy was used across almost all
successful interventions. Vismara and Lyons
(2007) highlighted the importance of following
the childs lead by nding joint attention was
emitted at a higher rate when the child was
engaging with perseverative over non-perseverate
interests. This use of perseverative interests
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tions, reciprocal play, imitative play, and compliance with instructions (e.g., Kagohara et al.,
2013; Lang, Shogren, et al., 2009).
Simpson, Langone, and Ayres (2004) utilized
video modeling to improve social behaviors of
four 5 and 6-year olds with ASD and speech and
language delays during small group activities with
a teacher. The four children spent a majority of
their day in a special education classroom and participated in inclusion periods in the general education kindergarten class. All children had limited
verbal skills, exhibited decits in social functioning, and rarely demonstrated the social skills
required for appropriate participation during small
group activities with the teacher. Targeted social
behaviors included social greetings, sharing with
peers, and compliance with teacher directions.
During the intervention, the participants used a
computer to view video models of appropriate
social behaviors. The video presented a statement
about the function of the targeted social behavior
and provided a denition of the behavior using
simple language appropriate to the childs understanding. Then, the participant viewed a 46 s
video clip of typical peers modeling the behavior
during structured school activities. After the peermodeling clip, a summary of each behavior was
presented using still photos. Finally, participants
viewed the video clip one additional time.
Observation of social behaviors occurred during structured small group reading, math, and art
activities. Each participant was given four opportunities during each activity to demonstrate compliance with teacher directions, initiate greetings to
the teacher and other students in the group, and
share materials with a peer during the activity.
During baseline, children demonstrated low levels
of the targeted behaviors. Following the video
modeling intervention, all participants showed
increases in unprompted use of the targeted social
skills, and these gains continued to rise steadily
over the course of the intervention. By the end of
the intervention one participant demonstrated the
targeted social behaviors during small group activities 94 % of the opportunities, two participants
demonstrated the targeted social behaviors 97 % of
opportunities, and one participant demonstrated the
targeted social behaviors 100 % of opportunities.
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500
Practice Recommendations
There is a wide body of literature pertaining to
social skills interventions for children with disabilities at this developmental stage from which
practitioners can draw upon to inform their work.
The primary objectives of social skills treatments
are to promote skill acquisition, enhance skill
performance, remove competing problem behaviors, and facilitate the generalization and maintenance of skills (Gresham, Sugai, & Horner,
2001). The studies presented in this section successfully address these objectives and can provide valuable guidance for practitioners providing
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Practice Recommendations
During adolescence, peer interaction plays a
prominent role in social development, and
social skills interventions for adolescents with
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506
Summary
Practice Recommendations
Social problem-solving interventions have
proven to be powerful preemptive or antecedent
strategies for addressing important social decits
with adults with intellectual disability. This strategy has typically been used with individuals with
mild or moderate disabilities who are experiencing difculties interacting socially with peers
without disabilities in inclusive social contexts
(work, leisure, or school environments). Findings
seem to indicate that social problem solving is a
powerful antecedent intervention strategy. It can
be described as an antecedent intervention strategy in that intervention does not occur at the
point in time when the person is expected to perform. Instead, training occurs prior to when the
person is expected to perform and typically in a
setting that is removed from the criterion environment. For example, social skills for interacting in the community are taught to participants in
the privacy of their group homes (i.e., OReilly,
Lancioni, & Kierans, 2000). This form of intervention appears to be quite powerful in that it
produces generalization of skills across setting
and maintenance of skills over time.
As demonstrated by Browder et al. (1998), the
provision of choice as an antecedent intervention
appears to be an effective method of increasing
engagement in social situations and empowering
individuals with disabilities. These interventions
allow individuals to communicate their wants
and needs and can, therefore, enhance their quality of life by providing greater opportunities for
expressing self-determination. In order for interventions relying on the provision of choice to be
effective, two issues need to be taken into consid-
18
Social Skills
507
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19
Introduction
Early Intensive Behavioral Intervention (EIBI)
is, arguably, the most successful and well known
example of an evidence-based approach for
young children with autism or Autism Spectrum
Disorder (ASD), many of whom have comorbid
Intellectual Disability (ID). In the past 20 years,
enormous amounts of human and nancial
resources have been devoted to this approach in
North America and elsewhere. In many jurisdictions, EIBI has generated debate, excitement,
controversy, and litigation. This has resulted in
the launching of new service systems (public and
private), new training programs for staff, new
degree programs, professional certication initiatives, and new research programs.
Historically, behavioral interventions have
been used with individuals with ID and/or autism
since at least the 1950s, including specic treatments and teaching strategies designed to
increase skills (such as speech, play, toileting)
and decrease problem behavior (e.g., self-injury,
511
512
Description of EIBI
Behavioral Intervention for Autism
A wide variety of treatment and educational
approaches have been suggested and tried in
order to help children with autism. For example,
Perry and Condillac (2003) reviewed over 50
types of treatment. Results of this review, as well
as other comprehensive reviews of the research
evidence (NAC, 2009; NRC, 2001; NYSDH,
1999; Wong et al., 2013), demonstrated that
interventions that have the best evidence of effectiveness are behavioral in nature (versus medical
or psychological). The term behavioral is quite
a broad term and includes many specic treatment approaches, or focused intervention strategies (Odom, Collet-Klingenberg, Rogers, &
Hatton, 2010), that are based on the principles of
A. Perry et al.
19
513
Characteristics of EIBI
1. Begins in the Preschool Years
By denition, EIBI is a form of Early Intervention
and typically takes place during the preschool
years. It can be argued from several theoretical
viewpoints why an early start might be important.
From a neurological perspective, there may be
critical or sensitive periods when there is still sufcient experience-dependent synaptic plasticity
(Chugani, 2005) for EIBI to alter brain functioning. From a developmental perspective, intervening early, before a child has fallen too far behind
their peers, would be advantageous. A behavioral
perspective would stress the importance of developing adaptive repertoires of skills early to prevent, and not have to unlearn, nonfunctional and
less desirable behavioral repertoires. Empirical
ndings regarding starting age are discussed
below in the Research section of this chapter.
2. Is Intensive in Nature
EIBI is intended to be an intensive treatment,
meaning it takes place over many hours per day
across many of the childs daily environments
(Eikeseth, Klintwall, Jahr, & Karlsson, 2012;
Lovaas, 1987). Often, children receive between
20 and 40 h per week of therapy for 12 years, or
even longer. The NRC (2001) Report recommended a minimum of 25 h per week for
12 months per year. Research ndings on the
importance of intensity, as well as duration of
treatment, are also discussed below in the
Research section of this chapter. The intensity of
EIBI also extends to an intensive model of supervision, whereby the treatment and progress of
each child is examined frequently with the childs
treatment team by a highly qualied supervisor.
3. Uses Structured Behavioral
Teaching Principles
It is not simply the amount of time the child is in
intervention but the behavioral nature of the
treatment that is crucial (Eikeseth, Smith,
514
A. Perry et al.
19
instruction, are individualized based on a thorough (and ongoing) assessment of the childs
strengths, weaknesses, and preferences. A variety
of program variables are commonly individualized, including environmental arrangements (i.e.,
level of distraction, amount of integration into
natural environments), child to adult ratios, balance and timing of peer integration, approach to
communication (i.e., speech, AAC), type and
schedule of reinforcement, and selection of
focused intervention practices (NRC, 2001;
Odom, Hume, Boyd, & Stabel, 2012).
515
516
A. Perry et al.
learning, time delay prompting, incidental teaching, pivotal response training, social skills training, and structured play groups are used (Strain
& Bovey, 2011; Wong et al., 2013).
19
517
A. Perry et al.
518
19
519
A. Perry et al.
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19
diagnosis of PDD-NOS, versus those with a diagnosis of Autistic Disorder, were more likely to
achieve average functioning following EIBI.
Overall, this small body of literature shows
that children at the less severe end of the Autism
Spectrum tend to do better following EIBI, than
children who are more severely affected.
Presence of Medical/Genetic
Conditions
Children with ASD often have additional medical
diagnoses or genetic conditions (Eriksson et al.,
2013), although there has been very little research
on this because such characteristics are often
exclusion criteria for treatment studies. Therefore,
no meta-analysis has yet been performed to
determine how children with additional diagnoses fare in EIBI.
Only one study, by Eriksson and colleagues
(2013), examined the impact of these conditions
on EIBI outcome, as measured by changes in
adaptive behavior over the duration of treatment, in a community sample. A medical or
genetic condition was present in 18 % of the
children in their sample. Children with such
medical conditions were referred to treatment at
a younger age. However, children who are diagnosed with autism at a younger age have an
increased risk of having comorbid ID (in addition to medical/genetic disorders), whereas children diagnosed at older ages may be more likely
to have milder forms of ASD. The children with
medical/genetic conditions, though they started
treatment earlier, demonstrated poorer outcomes than children without a medical or
genetic condition. The results of this study
emphasize the importance of taking medical
conditions and needs into account, as these may
diminish the effectiveness of EIBI.
Children with Intellectual Disabilities
Without ASD
In principle, EIBI should be applicable to children with ID without ASD, as well. In fact, the
main outcomes of EIBI treatment in studies of
children with autism are improvements in cognitive functioning (IQ) and adaptive skills, the two
areas that dene ID. However, there have been
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522
Treatment Quantity
The effect of different intervention factors on
childrens variable outcomes in EIBI has been
explored, in particular the quantity of the intervention. In a comprehensive synthesis of EIBI
research, Reichow and Wolery (2009), found that
standardized regression coefcients for duration
of therapy and total hours of therapy were large.
Results suggested that the number of months of
intervention and/or the number of hours of therapy were related to a higher probability of achieving a large change in IQ scores. Meta-analyses
have found treatment quantity to be an important
factor in childrens progress in EIBI. For example, one meta-analysis of 14 studies found that
the intensity and duration of the programs were
correlated with childrens outcomes (Makrygianni
& Reed, 2010).
Intensity
Studies have shown that higher intensity of intervention, about 2040 h per week, has been linked
to improved outcomes (Eikeseth et al., 2002;
Granpeesheh, Kenzer, & Tarbox, 2011; Lovaas,
1987; Smith, Groen, et al., 2000). For example,
Lovaas (1987) showed that children who received
about 40 h of intervention per week had signicantly higher IQ scores after treatment, as compared to children who received 10 h or less.
Smith, Groen, et al. (2000) replicated and
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523
Duration
Treatment Quality
524
poor training, and poor supervision) are associated with less optimal outcomes (e.g., Bibby
et al., 2002; Magiati et al., 2007).
Although the need for well-trained supervisors
is generally accepted, not much is known about
the frequency or type of supervision required for
best EIBI outcomes. Only two studies thus far
have included frequency of supervision as a predictor of outcomes following EIBI and the results
of these studies are inconsistent, with one not
nding any signicant relationship between these
two variables (Sallows & Graupner, 2005), and
the other indicating that a higher intensity of
supervision (i.e., more frequent supervision and
more supervision hours) was signicantly correlated with higher IQ scores after EIBI (Eikeseth,
Hayward, Gale, Gitlesen, & Eldevik, 2009, based
on data from Hayward et al., 2009).
A. Perry et al.
dence-based and best practice standards. The overarching goal of the YSQA is to promote continuous
improvement in quality of service to maximize
outcomes for children. The YSQA is designed to
assess the quality of an EIBI program in a comprehensive way at different levels: quality of EIBI
teaching, quality of programming, and quality of
the larger organization, with data gleaned from
live and videotaped observations of EIBI sessions,
reviews of childrens binders, central clinical les,
organizational les, and surveys of parents and
staff (described in more detail in Table 19.1)
One central component of the broader YSQA
is the York Measure of Quality of IBI (YMQI;
Perry, Flanagan, & Prichard, 2008), which takes
a very detailed look at the quality of the EIBI
teaching. In order to use the YMQI, a video of an
EIBI session at least 20 min in length is obtained
and two 5-min segments are chosen at random.
Trained coders then code each 5-min segment
according to the detailed instructions outlined in
the YMQI Administration Manual (Perry,
Flanagan, et al., 2008). Each segment is scored
according to 31 individual items in nine categories (See Table 19.2). Each item is operationally
dened and specic criteria for a particular rating
are listed in the Administration Manual to help
guide the coder in scoring the video. Each item is
rated on a 5-point Likert scale (13 with
half-points). Because the YMQI is a measure
with high reliability and strong validity, training
is required to implement it accurately, which
includes completing a quiz on behavioral principles, viewing a self-guided training DVD and
completing the included exercises, and achieving
at least 80 % inter-rater agreement with the
YMQI developers on sample videos. The YMQI
is currently being used in a study examining its
factor structure and the relation of those factor
scores to childrens progress and outcomes in
EIBI. Preliminary analyses show a modest correlation between YMQI total score and childrens
developmental gains (Perry, Freeman, Dunn
Geier, & Blacklock, 2013). Others are using the
YMQI internationally as a measure of quality of
intervention in various situations (Perry, 2014).
For more information about the YMQI or YSQA,
please contact perrylab@yorku.ca
19
525
Table 19.1 Conceptual layers and sources of data of the York System of Quality Assurance (YSQA; Perry, Koudys,
et al., 2008)
Quality area
Quality of teaching
Description
Effectiveness with which behavioral
teaching strategies, such as
prompting and reinforcement, are
implemented
Quality of programming
Quality of mandate
Practice Recommendations
Based on the research described above and our
clinical experience, we now provide a series of
key recommendations for practitioners. These
are grouped into recommendations related to
child factors to take into account, quantity aspects
of EIBI, and, perhaps most important, factors
related to the quality of the EIBI.
Sources of data
Live Observation Checklist
(e.g., data recording, procedural
delity)
Video Checklist (e.g.,
procedural delity, inter-staff
consistency)
Coding of videos according to
the YMQI (described in detail
below)
Local Child Clinical Files
Checklist (e.g., curriculum, data
collection, behavior protocols)
Organizational Files Checklist
(e.g., program intensity, amount
of supervision)
Staff and Parent Surveys (staff
and parent perception of their
involvement in programming)
Central Child Clinical Files Checklist
(e.g., supervision processes,
continuum of services)
Organizational Files Checklist (e.g.,
staff qualications, training)
Staff Surveys (e.g., staff perception of
their workload, job satisfaction)
Parent Surveys (e.g., parents
perceptions of communications with
program, training opportunities)
Level of Functioning
While research does not permit us to specify precisely a minimum IQ or a pre-treatment IQ range
that is optimal, it appears that children with mild
to moderate levels of intellectual disability are the
best candidates with the most research evidence.
Within this range, pre-treatment IQ levels seem to
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526
Table 19.2 Categories and items of the York Measure of Quality of IBI (YMQI; Perry, Flanagan, et al., 2008)
YMQI category
Discriminative stimuli (SDs)
Reinforcement
Organization
Pacing
Teaching level
Instructional control
Generalization
Problem behavior
YMQI items
1. Attending during SDs
2. Varying SDs
3. Rapid reinforcer delivery
4. Motivating reinforcers
5. Varying reinforcers
6. Relation of reinforcers to the task
7. Sincere/motivating verbal
reinforcers
8. Differential reinforcement
9. Effectiveness of prompts
10. Fading and augmenting of prompts
11. Lack of prompting errors
12. Follow through
13. Implementation of error correction
14. Clear plan and teaching goals
15. Accessible materials
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527
Duration
EIBI is not intended to be a long-term treatment.
Rather, it is intended to boost childrens developmental trajectory, often within a 1- to 2-year period
of time, so they are better equipped to learn in a
less restrictive environment. Although the minimum amount of treatment required is unclear, it is
unlikely that best outcomes will be achieved in
less than 1 year of treatment. Given the aforementioned variability in child factors, including autism
symptom severity and level of comorbid intellectual disability, it is probable that different children
may benet from varying lengths of time in treatment. Some children may demonstrate early gains
with limited additional improvement in subsequent months or years of treatment, as described
previously. Other children may continue to make
gains over a longer period of time. As such, it is
recommended that childrens progress in EIBI be
monitored on an ongoing basis to determine
whether intervention continues to be warranted.
For example, Autism Connection (Cohen et al.,
2006) recommends reviewing progress at 6, 12, 24
and 36 months to determine whether children have
achieved predetermined skill markers to support
continuation. See also Blacklock and Perry (2010)
for a preliminary test of such an approach.
A. Perry et al.
528
Curriculum
Programming should be comprehensive in scope
and developmental in sequence, with particular
focus on the core decits and behavioral excesses
associated with ASD. Given the pervasive nature
of ASD symptoms, EIBI curricula should include
targets across all areas of development (i.e., communication, self-help, play and social skills, and
so on). Targets should be selected to meet the current needs of the child, and, with success, new targets established in a developmental manner.
Particular emphasis should be on the development
of social-communicative and social interaction
skills, often best addressed using incidental and
naturalistic teaching strategies. Given the variation in childrens expressive communication abilities, consideration should be given to the use
systems such as PECS, which have been associated with increases in spontaneous communicative
behavior, reductions in interfering behavior, and
for some children, speech development. For those
children exhibiting behavioral excesses, including
stereotypical, self-injurious, aggressive or disruptive behaviors, a positive approach to behavior
reduction is recommended. The use of evidence
based strategies, such as functional behavior
assessment, functional communication training,
differential reinforcement, and extinction, is recommended to help children develop more appropriate skills, while reducing interfering behavior.
Individualization
Programming should be individualized for each
specic child. Given the diversity of proles of
children with ASD, clinicians and researchers
should not dogmatically subscribe to one approach
to skill development, behavior reduction, modality of communication, or brand of intervention.
Rather, programming should draw from the available research to support the development of an
individualized treatment plan which takes into
Data-Based
Direct observational data need to be collected and
analyzed regularly, along with standardized
assessment data. Standardized assessments (i.e.,
measures of intellectual and adaptive functioning)
should be used in order to establish program priorities, to assess change in developmental rate, and
to evaluate child and program outcomes. In addition, direct observational data (i.e., trial-by-trial
data, frequency, rate, duration, percent correct)
should be collected and analyzed in order to monitor childrens ongoing performance in programming. These data should be graphed and reviewed
regularly in order to ensure timely adjustments are
made, including adjustments to teaching procedures, discontinuation of ineffective teaching
strategies, and the selection of new targets. Data
should also be used to monitor rate of skill acquisition, to determine whether skills are generalizing
beyond the teaching environment, and to determine whether the child is ready to transition to less
structured and less intensive teaching formats (i.e.,
naturalistic teaching methodologies, group settings, school and peer integration). Finally, data
should be collected in order to determine the function of interfering behavior, as well as to monitor
the change in interfering behavior over time.
Expert Supervision
EIBI should be frequently supervised by individuals with appropriate levels of academic training and
credentials. It is recommended that program super-
19
Parent Involvement
It is important to involve parents as part of the
treatment team, although such involvement can
take different forms depending on the situation
529
and the parents interest, capacity, and availability. Minimally, parents should receive education
about ASD and the principles of EIBI. Their
attendance and participation in meetings to
review progress and set treatment goals should be
strongly encouraged. Whenever possible, parents
should also receive behavioral parent training
and be encouraged to promote skill generalization, if not actually deliver some of the intervention at home. Within increasingly diverse and
multicultural societies, in which therapists are
often not the same ethnicity as the child they are
treating, parent involvement is increasingly
important to ensure treatment gains are generalized to the childs everyday life. It is recommended that interventions be tailored to each
familys culture and ecology and individual family differences be integrated into parent-delivered
interventions (Moes & Frea, 2002). Regardless of
culture or ethnicity, parent involvement is needed
to ensure that the treatment is appropriately tailored to the child and the familys needs.
Variety of Settings
It is recommended that EIBI take place in selected
setting(s) based on individual child and family
requirements. Consideration should be given to
child variables, such age, developmental level,
social skills, language, and the presence of interfering behaviors. Family variables, such as parent
preference and the selection of a setting which
allows for parental involvement in treatment,
should also be considered. Finally, consideration
should be given to current program priorities that
may impact on setting suitability, such as the
need for more intensive basic skill development
versus a focus on the development of social, selfhelp and language skills. As with other facets of
IBI, the appropriateness of the treatment setting
should be regularly monitored as children
develop new skills and their educational requirements change. For example, it may be appropriate to begin in one-to-one home-based
programming and then shift to natural settings,
such as classrooms, once additional language and
social skills have been developed. As always,
treatment decisions should be guided by ongoing
data collection and analysis.
530
Typical Peers
Given the identied social-communicative decits associated with ASD, programs should incorporate opportunities for inclusion with typically
developing peers. Inclusion opportunities should
be supported and systematic, involving developmentally appropriate play and interaction goals,
with predetermined teaching strategies, and
objective measures to monitor progress. Simple
exposure to peers, or inclusion for the sake of
inclusion, is not recommended. Rather, inclusion opportunities should be developmentally
sequenced and use evidence-based teaching strategies, such as errorless learning, time delay
prompting, incidental teaching, pivotal response
training, and peer-mediated social skill
interventions.
Transition Planning
Good EIBI programs include careful planning for
a systematic transition into school or the next
environment. The school integration and transition process should be approached systematically, with prespecied goals and teaching
targets, as well as appropriate levels of support in
order to achieve these goals. A period of gradual
transition, reducing time in one-to-one therapy,
while systematically increasing time in the classroom setting, is recommended. Childrens development and use of appropriate social, language
and school readiness skills should be monitored
and used to guide the transition process.
Consideration should be given to the provision of
support from IBI therapists in the classroom setting in order to help children generalize previously learned skills, learn new skills in the
classroom setting, and adjust to classroom routines. Similar to other areas of EIBI practice,
school transition should be guided by evidence of
childrens success; as children demonstrate success in the classroom, support should be reduced,
as should ongoing one-to-one treatment.
Generalization
Systematic plans need to be created from the start
of EIBI to promote generalization and maintenance of skills. Practitioners are encouraged to
train loosely, whereby multiple exemplars, varied
A. Perry et al.
19
observational data which is compared to prespecied indicators of success, including singlesubject experimental designs whenever feasible.
Other Disciplines
Interdisciplinary consultation may be appropriate
and helpful. Children with ASD often present
with a complex array of medical, communication, sensory, and physical requirements.
Psychologists, speech language pathologists and
occupational therapists may provide helpful
information related to the developmental
sequencing of targets in the areas of communication, play and social skills, ne and gross motor
development, and self-help skills. Developmental
pediatricians and family doctors may help ensure
good physical health, rule in or out biological
contributions to presenting behavioral difculties, and prescribe medical treatments when
appropriate. Educational professionals may aid
in the selection of appropriate academic and
school readiness targets. The expertise gleaned
from these broader disciplines should be integrated and monitored in an evidence-based manner, as deemed appropriate by an appropriately
qualied IBI supervisor (as described above).
While consultation from a diversity of professionals may be benecial to IBI, the use of an
eclectic model of treatment is not recommended;
the expertise of varying professionals should be
integrated into the behavioral program, while
maintaining the use of evidence-based practices
to teach new skills and reduce interfering
behaviors.
Research Recommendations
Although EIBI is, at this time, a solidly evidencebased treatment approach for young children
with autism, there remain a number of questions
requiring further research.
The caliber of the research needs to be
improved in several respects. The participants
need to be described fully both diagnostically
and developmentally and should be assessed with
standardized instruments. Sampling procedures
need to be specied clearly, especially in the case
531
532
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20
Active Support
Sandy Toogood, Vasiliki Totsika, Edwin Jones,
and Kathy Lowe
Introduction
Deinstitutionalization offered the prospect of an
improved quality of life for many people with intellectual disabilities. It was widely expected that most
individuals would prosper from simply occupying
small ordinary homes in community locations with
supervision from a paid staff. Experience quickly
revealed that, while small community homes provided many more opportunities than institutions for
people to live ordinary valued lives, those opportunities needed to be worked upon to realize their
potential. The quest to take full advantage of these
opportunities, especially for people with a severe
degree of disability, led to the development and subsequent renement of Active Support.
Active Support describes a philosophy of care,
a set of working practices, and a method of provid-
S. Toogood (*)
Behavioural Solutions and School of Psychology,
Bangor University, Gwynedd, Wales LL57 2AS, UK
e-mail: sandy.toogood@gmail.com
V. Totsika
CEDAR: Centre for Educational Development,
Appraisal and Research, University of Warwick,
Coventry, UK
E. Jones K. Lowe
Abertawe Bro Morgannwg University Health Board,
Port Talbot, UK
University of South Wales Wales UK
537
538
S. Toogood et al.
Active Support
20 Active Support
539
540
S. Toogood et al.
Activity Scripts
Most people have a preferred way of performing
activities, such as washing dishes, and apply a
standard to the things they do regularly that
typically involves how often (e.g., 34 times
daily), how well (e.g., standard of cleanliness),
and under what conditions (e.g., soon after nishing a meal). When residents rely on staff for
assistance to participate in activities, they are at
risk of being subjected to staff preferences in
place of their own. Moreover, when a team
of staff is involved there may be several ways of
doing each activity. This can become a problem
when there is a high degree of variability in staff
expectations and working methods that leads to
resident passivity or behavior maintained by
escape or avoidance. Activity scripts are a component of Active Support that provides part of the
solution.
Activity scripts are a form of task analysis;
they break down complex activities into component steps that correspond to individual and
household preferences. Scripts are then written
down for staff to follow every time the activity is
done. Individual members of staff quickly learn
the scripts so they are not obvious to the person
or an observer. Scripts typically delineate a
method, pace and standard based on an analysis
of resident preference. The main aim is to ensure
consistency in the way the resident is supported
in doing the activity and that this does not change
according to which member of staff is providing
support. Scripts may also specify a frequency and
standard for an activity and can include a risk
assessment if necessary. Scripts cover personal
routines, such as a morning schedule, as well as
generic activities such as a mealtime. Systematic
and consistent use of scripts by all staff helps individual residents to become more autonomous and
independent within and across their routines.
The logic of scripts is that each staff member
learns one way of carrying out everyday activities, instead of residents having to learn as many
ways as there are staff. This avoids residents
being inadvertently corrected by staff according
to staffs preferred way of doing things, and, as a
consequence, becoming unnecessarily dependent
20 Active Support
541
542
S. Toogood et al.
20 Active Support
543
544
provides at least three opportunities for interacting that are easier and mutually more rewarding.
Residents and staff are able to interact when (a)
deciding what they will do together, (b) discussing what is being done, and (c) talking about
what they just did together. In these ways interaction becomes easier and more rewarding for staff
as well as residents.
S. Toogood et al.
20 Active Support
Workshops
Active Support workshops are whole team
events, tailored to the setting and with a personcentered focus on the residents of the home.
Workshops are participatory and cover basic theory
mainly through facilitated discussion. Workshops
also develop product. At the end of a 1- or 2-day
workshop following the Jones et al. (2009) model a
team will have produced a rst draft Activity and
Support Plan for each resident of the home to use,
together with one or two activity scripts to trial in
the onsite coaching sessions.
On-Site Coaching
Skills for transacting support are trained in-situ
in coaching sessions led by Active Support
trainers, e.g., in supervised practice sessions
(P-CAS), or, as in the Jones et al. model, through
more formally constructed Interactive Training
sessions (Toogood, 2008, 2010). Coaching usually involves residents of the home engaging in
activities and using materials that are ordinarily
available at ordinary times of the day.
Interactive training procedures combine
many features researchers consider essential for
effectiveness (Toogood, 2010). For example,
skills targeted for training are identied from an
analysis of each staffs observed baseline performance. Targeted skills are trained in the context
within which they will be used. Coaching occurs
in a continuous cycle of observation, rehearsal
and feedback. Each staff serves as his or her own
control and observational training data are used
to evaluate the impact of training on the behavior
of staff and related outcomes for residents (Jahr,
1998). Acceptability of the training procedures to
staff is routinely assessed along with an analysis
of training effectiveness and efciency (Parsons,
Reid, & Green, 1996; Toogood, 2008).
In broad terms, onsite training procedures in
P-CAS are similar to those in interactive training,
but P-CAS onsite training is less formal and has
fewer observational performance measures than
Interactive Training. Implementation, generalization, maintenance, and the further development
of staff skills, are each addressed through practice
leadership from senior members of the team
(Mansell & Beadle-Brown, 2012).
545
546
S. Toogood et al.
20 Active Support
547
548
S. Toogood et al.
20 Active Support
clearly important, so is acceptability from stakeholders in ensuring both take up and maintenance.
Evidence from three studies from the UK and New
Zealand indicates that residents, support staff,
in-house supervisors and managers (Graham
et al., 2013; Jones, Felce, Lowe, Bowley, Pagler,
Gallagher, et al., 2001; Totsika, Toogood, Hastings,
et al., 2008) value Active Support for what it can
offer both to those who reside in community
homes and to those who support them.
549
S. Toogood et al.
550
Support staff
cannot think of
goals or
activities
residents
could do. They
see their role
as domestic
worker rather
than as
enabler.
They do not
know how to
enable
participation
Residents do
not participate in
valued activities
and spend most
time doing
nothing. They
have a poor
quality of life
Support
staff
perceive
residents as dependent and
unable to do activities. They do
not
spend
much
time
interacting
with
residents,
assisting them or treating them
with respect Support staff are
also apprehensive about trying
new things
Fig. 20.1 A vicious circle of disempowerment in hotel models (Adapted from Jones & Lowe, 2005)
20 Active Support
551
Residents
participate
successfully
in some
activities
Support
staff think
of new
ideas for
more goals
and
activities
Support
staff see
themselves
as
enablers
Support staff perceive residents
as more competent, successful
and valued. Support staff give
residents more respect, control
and attention. Support staff feel
more confident, successful and
eager to try new things
Fig. 20.2 A virtuous circle of positive interaction and empowerment (Adapted from Jones & Lowe, 2005)
552
S. Toogood et al.
20 Active Support
553
S. Toogood et al.
554
Leadership
The effectiveness of any training in improving
support staff performance is dependent on inhouse supervisors helping support staff to
implement in practice what they have learned in
theory (Anderson, 1987; Jones, Blunden, Coles,
Evans, & Portereld, 1987). Research has highlighted the importance of Practice Leadership
in ensuring the effective implementation of the
Active Support model (Beadle-Brown et al.,
2014; Hewitt et al., 2004; Jones, Felce, Lowe,
Bowley, Pagler, Gallagher, et al., 2001; Larkin
& Larkin, 1996; Sturmey, 1998). Practice
leadership requires the rst line in-house supervisor to understand the theoretical and practical
aspects of the AS model and to lead by role
modeling. Practice leaders should regularly
work alongside support staff to support, observe
and provide feedback to reinforce the desired
support staff performance. This also allows
them to problem solve any barriers to implementation. These elements form the core of
interactive training (Toogood, 2008, 2010).
Practice leadership in Active Support has many
similarities with Positive Monitoring, a technique specically designed for services for
people with intellectual disabilities over
20 years ago and integral to the Nimrod project
(Lowe & de Paiva, 1991a; Portereld, 1987).
However, administrative management that is
more concerned with general bureaucratic
aspects and distanced from day-to-day support
staff practice is often the norm in many contemporary service settings and characterizes the
hotel model. Embedding Active Support is
achieved by developing practice leadership
through in-house supervisors involvement in
Active Support training which enables them
to develop support staffs practical skills in
positive interaction as an inherent component
of the long-term managerial approach. We suggest that services should (a) adopt a strategic
approach to developing practice leadership, (b)
incorporate Positive Monitoring as a routine
part of management practice, and (c) provide
greater clarity in job descriptions at all levels to
ensure that all roles are operationalized.
20 Active Support
Conclusion
Although the term Active Support is used widely,
it is not a homogenous or single entity. Rather, it
is an organized set of principles, practices
and procedures informed by a person-centered
service philosophy and fundamental concern for
how residents of small community homes and
their staff use their time together. The main aim
of Active Support is to create and sustain conditions in which staff act effectively as enablers,
and residents are able to participate meaningfully
in the ordinary activities of everyday life.
In this regard Active Support places a great
deal of emphasis on what staff and staff teams do.
Pivotal skills needed to implement Active
Support effectively are the ability to:
1. Plan and then create opportunities for people
with intellectual disabilities to take part in
the natural ow or ordinary, everyday, lifedening activities,
2. Supply the momentary motivation, support
and assistance individuals need to participate
successfully in those activities, and
3. Monitor, evaluate and adjust expectations,
opportunities and outcomes, together with the
level and type of assistance provided in regard
to the individual, the service setting, and across
a service agency or provider organization.
In pursuing these aims, Active Support utilizes training interventions that typically combine elements of theory and values-based learning
with developing Active Support materials and a
focused learning event delivered through onsite
coaching in the workplace. Maintenance is
strengthened in the presence of ongoing practice
leadership from in-house supervisors with
support from their managers. It is important
to note, however, that Active Support is not a
panacea or quick x to remediate poor quality or
badly designed services. Active Support does not
work in badly designed services that have
strongly institutional characteristics, weak management or staff who have intractable attitudes
that people with intellectual disabilities cannot
develop or learn, or should not be involved in
typical life experiences. These things also need to
change. Reviewing services through the prism of
555
556
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21
Introduction
Promoting the self-determination of adolescents
and adults with intellectual disability has emerged
as a best practice for a variety of reasons to be
articulated in this chapter, among them the association between enhanced self-determination and
choice opportunities with more positive quality of
life and life outcomes for youth and adults with
intellectual disability (Nota, Ferrrari, Soresi, &
Wehmeyer, 2007; Shogren, Wehmeyer, Palmer,
Rifenbark, & Little, 2015). Fundamentally, however, a focus on promoting self-determination has
increased in importance in synchronicity with the
emergence of greater civil rights protections and
enhanced community and school inclusion for
people with disabilities. It is not simply coincidence that the rst mention of the rights of people
with intellectual disability to self-determination
was in a chapter written by Bengt Nirje (1972)
the Swedish philosopher who introduced the
Normalization Principlein a text introducing
that same principle to a North American audience.
In that chapter, Nirje argued that:
One major facet of the normalization principle is
to create conditions through which a [handiM.L. Wehmeyer (*) K.A. Shogren
Department of Special Education, Kansas University
Center on Developmental Disabilities, University of
Kansas, Lawrence, KS, USA
e-mail: wehmeyer@ku.edu
561
562
Normalization Principle
It is logical that the earliest call for selfdetermination within the eld of intellectual disability occurred as a function of the articulation
and implementation of the Normalization
Principle. Scheerenberger (1987) suggested that
no single categorical principle had ever had a
greater impact on services for people with intellectual disability than did that of the Normalization
Principle. In conjunction with the independent
living movement, whose inuence was felt most
signicantly by people with physical and sensory
impairments, the Normalization Principle paved
the way for greater community inclusion for people with intellectual disability and, ultimately,
provided the foundation to focus on promoting
self-determination.
Nirje (1969) explained that the normalization
principle had its basis in Scandanavian experiences from the eld and emerged, in essence,
from a Swedish law on mental retardation, which
was passed July 1, 1968. In its original conceptualization, the normalization principle provided guidance for creating services which let the [mentally
retarded] obtain an existence as close to the normal
as possible (Nirje, 1969, p. 363). Nirje stated:
As I see it, the normalization principle means making available to the [mentally retarded] patterns
and conditions of everyday life which are as close
as possible to the norms and patterns of the mainstream of society (p. 36.).
Nirje (1969) identied eight facets and implications of the normalization principle:
1. Normalization means a normal rhythm of day.
2. Normalization implies a normal routine of
life;
3. Normalization means to experience the normal
rhythm of the year;
4. Normalization means the opportunity to
undergo normal developmental experiences
of the life cycle;
5. Normalization means that the choices, wishes
and desires [of the mentally retarded themselves] have to be taken into consideration as
nearly as possible, and respected.
6. Normalization also means living in a bisexual
world;
7. Normalization means normal economic standards [for the mentally retarded];
8. Normalization means that the standards of the
physical facility should be the same as those
regularly applied in society to the same kind
of facilities for ordinary citizens.
Scheerenberger (1987) noted that at this
stage in its development, the normalization principle basically reected a lifestyle, one diametrically opposed to many prevailing institutional
practices (p. 117).
21
563
Changing Understandings
of Disability and Support Models
In large measure because the aforementioned
movements and actions that codied the community as the place where people with intellectual disability should live, learn, work, and
play and because civil protections ensured equal
access, there began to emerge biopsychosocial
models of disability that emphasized the t
between a persons capacities and the demands
of the environment. Lockstep with civil protections guaranteeing non-discrimination around
the world, in the late twentieth Century the ways
in which disability itself was understood began
to change, thus facilitating a strengths-based
approach (Buntinx, 2013). Such reconceptualizations began with the introduction of the
564
21
565
566
21
567
Socio-contextual Inuences
People who are causal agents respond to challenges (opportunities or threats) to their selfdetermination by employing causal and agentic
actions, supported by action-control beliefs. This
leads to self-determined action that allows them
to initiate and direct their behavior to achieve a
desired change or maintain a preferred circumstance or situation. In response to challenges,
causal agents use a goal generation process leading to the identication and prioritization of
needed actions. The person frames the most
urgent action need in terms of a goal state, and
engages in a goal discrepancy analysis to compare current status with goal status. The outcome
of this analysis is a goal-discrepancy problem to
be solved. The person then engages in a capacitychallenge discrepancy analysis in which capacity
to solve the goal discrepancy problem is evaluated. The person maximizes adjustment in capacity (e.g., acquires new or renes existing skills
and knowledge) or adjusts the challenge presented to create a just-right match between
capacity and challenge to optimize the probability of solving the goal discrepancy problem.
Next, the person creates a discrepancy
reduction plan by setting causal expectations,
making choices and decisions about strategies
to reduce the discrepancy between the current
status and goal status. When sufcient time has
elapsed, the person engages in a second goal
discrepancy analysis, using information gathered through self-monitoring to self-evaluate
progress toward reducing the discrepancy
between current and goal status. If progress is
satisfactory, they will continue implementing
the discrepancy reduction plan. If not, the person either reconsiders the discrepancy reduction plan and modies that or returns to the goal
generation process to reexamine the goal and
its priority and, possibly, cycle through the process with a revised or new goal.
568
Development of Self-Determination
Self-determination develops across the life span,
emerging as adolescents develop and acquire
multiple, interrelated skills, referred to as component elements of self-determined action that
enable the expression of the essential characteristics, including learning to make choices and
express preferences, solve problems, engage in
making decisions, set and attain goals, self-manage and self-regulate action, self-advocate, and
acquire self-awareness and self-knowledge.
Self-determination is also an important contributor to the individuation process during adolescent
development. Individuation refers to the process of
moving from being primarily dependent upon others (for a child, typically his or her family), to being
primarily dependent upon oneself; the physiological, psychological, and sociocultural processes by
which a person attains status as an individual
human being and exerts him- or herself as such in
the world (VandenBos, 2007, p. 477).
21
569
570
determination (e.g., choice making, decision making, problem solving, goal setting and attainment,
self-advocacy). Algozzine and colleagues found
that when students with disabilities were provided
instruction to promote such component elements,
students were successful in acquiring such skills.
The median effect size across 100 group intervention comparisons from group design studies was
1.38 (Cohens d), while interventions evaluated
using single subject designs had a median percentage of nonoverlapping data (PND, a rubric analyzing how many data points in a graph were higher
than baseline measures) was 95 %. Both of these
suggest robust effects, with a Cohens d interpreted as a moderate to large effect, and a PND of
95 % indicating a large effect.
A second meta-analytic study examining the
evidence in the self-determination literature was
conducted by Cobb, Lehmann, NewmanGonchar, and Alwell (2009). Cobb and colleagues
conducted a narrative metasynthesis of the literature pertaining to efforts to promote the self-determination of students with disabilities.
A metasynthesis consists of a narrative summation
of both narrative reviews and more standard metaanalytic studies. Cobb et al. synthesized ndings
from seven existing meta-analyses, nding positive impacts from such interventions and that, perhaps not surprisingly, there were greater positive
effects from multicomponent interventions.
Self-Determination Assessments
There are two assessments that have been developed specically for use with people with intellectual disability, each described in this section.
21
571
Interventions to Promote
Self-Determination
We limit the discussion of interventions to promote
self-determination to those for which there is an
evidence base. Virtually all of these are
572
21
573
574
Students are encouraged to work on one session per week during the weeks between their
previous transition planning meeting and the next
scheduled meeting. The nal two sessions review
the previous sessions and provide a refresher for
students as they head into their planning meeting.
Wehmeyer and Lawrence (1995) conducted a
eld tested of the process, providing evidence of
the impact of the process on student selfdetermination, self-efcacy for educational planning, and student involvement. Wehmeyer,
Palmer, Lee, Williams-Diehm, and Shogren
(2011) conducted a randomized-trial, placebo
control group design to study the impact of intervention with the WFA process on selfdetermination and transition knowledge and
skills, nding that instruction using the WFA process resulted in signicant, positive differences in
self-determination when compared with a placebo-control group, and that students who
received instruction gained transition knowledge
and skills. Similarly, Lee et al. (2011) conducted
a randomized-trial study of the impact of the
WFA process both with and without the use of
technology, and determined signicant gains in
self-determination and transition knowledge and
skills as a function of instruction with WFA.
21
575
disabilities to participate in their planning meeting. Students are provided self-help materials and
coaching to identify their transition goals; to
organize and conduct transition planning meetings; and to achieve their goals through the application of problem solving, self-regulation, and
partnership management strategies. Concurrently,
youth participate in self-selected mentorship and
peer support activities to increase their transition
focused knowledge and skills. Their parents are
also provided with information and support to
promote their capacities to encourage their sons
or daughters active involvement in transition
planning. Powers et al. (2001) conducted a
control-group study and found that the TAKE
CHARGE materials had a positive impact on student involvement. As discussed previously,
Powers and colleagues (2012) conducted a
randomized-trial study of TAKE CHARGE for
the Future with youth in foster care who were
receiving special education services, including
students with intellectual disability. Instruction
with the intervention yielded moderate to large
effect sizes at post-intervention and at 1-year
follow-up in student self-determination, a measure of quality of life, and youth utilization of
transition services. Also, youth in the intervention group completed high school, obtained
employment, and were living in the community
at higher rates than were students in the control
group.
576
21
577
Table 21.1 Self-determined learning model of instruction phases, problems to solve, student questions, teacher objectives, and educational supports (Wehmeyer & Palmer, 1999)
Phase
Phase 1
Problem to solve
What is my
goal?
Student question
What do I want to
learn?
What do I know
about it now?
Teacher objectives
Enable Students to
identify specic
strengths and
instructional needs.
Enable students to
communicate
preferences, interests,
beliefs, and values.
Teach students to
prioritize needs.
Enable students to
identify their current
status in relation to the
instructional need.
Assist students to gather
information about
opportunities and
barriers in their
environments.
Enable students to
decide if action will be
focused toward capacity
building, modifying the
environment, or both.
Support students to
choose a need to address
from the prioritized list.
Teach students to state a
goal and identify criteria
for achieving goal.
Enable student to
self-evaluate current
status and self-identied
goal status.
Phase 2
What is my
plan?
What can I do to
make this happen?
What can I do to
learn what I dont
know?
Enable student to
determine plan of action
to bridge gap between
self-evaluated current
status and self-identied
goal status.
What can I do to
remove these
barriers?
Educational supports
Student selfassessment of interests,
abilities and instructional
needs.
Awareness training
Choice-making
instruction.
Problem-solving
instruction.
Decision-making
instruction
Goal setting and
attainment instruction.
Self-scheduling
Self-instruction
Antecedent cue
regulation
Choice-making
instruction
Goal-attainment
instruction
Problem-solving
instruction
Decision-making
instruction
Self-advocacy and
assertiveness training
Communication skills
training
Self-monitoring
(continued)
578
Table 21.1 (continued)
Phase
Problem to solve
Student question
Phase 3
What have I
learned?
Teacher objectives
Teach students needed
student-directed learning
strategies.
Support student to
implement student-directed
learning strategies.
Provide mutually agreed
upon teacher-directed
instruction.
Enable student to
determine schedule for
action plan.
Enable student to
implement action plan.
Enable student to
self-monitor progress.
Enable student to
self-evaluate progress
toward goal achievement
Support student to
reevaluate goal if progress is
insufcient.
Do I know what I
want to know?
Educational supports
Self-evaluation
strategies
Choice-making
instruction
Goal-setting
instruction
Problem-solving
instruction
Decision-making
instruction
Self-reinforcement
strategies
Self-recording
strategies
Self-monitoring
21
579
Table 21.2 Quasi-experimental or single subject design studies of SDLMI (from Wehmeyer & Palmer, 2007)
Study
Wehmeyer, Palmer,
et al. (2000)
Design
Prepost no control
group
Subjects
40 HS students: 13 w/
MR, 17 w/ LD, 10 w/
EBD
Dependent variables
SD, GAS, goal
skills, locus of
control
Agran, Blanchard,
and Wehmeyer
(2000)
Delayed multiple
baseline across
groups
19 MS/HS students w/
severe MR
McGlashingJohnson, Agran,
Sitlington, Cavin,
and Wehmeyer
(2003)
Palmer and
Wehmeyer (2003)
Multiple baseline
across subjects
4 HS students with
severe MR
GAS, % correct on
transition goals
linked to functional
needs
% correct on job
tasks, GAS
Prepost no control
group
50K-3rd grade
students: 21 w/ LD, 6
w/ MR, 5 w/ Speech
Impairments, 2 w/
OHI, 16 w/ Dev Delay
Goal attainment
and skills
Palmer, Wehmeyer,
Gipson, and Agran
(2004)
Interrupted time
series w/ switching
replication
22 MS students with
MR
SD, Problem
solving skills, GAS
Multiple-baseline
across subjects
3 MS students with
moderate MR
Academic goals
linked to district
standards
Outcomes
Progress on 80 % of
educational goals,
enhanced SD and
perceptions of
control.
Students attained
transition related
goals using model.
Students achieved
goals at greater than
expected level and
acquired goals
knowledge and
skills.
Students able to
achieve goals linked
to general education
curriculum using
model
Students mastered
skills linked to
standards in science,
geography.
580
determination, called the Self-Determination InventorySelf-Report version (Shogren et al., 2014), that includes
items from The Arcs Self-Determination Scale, but
expands assessment to include domains identied by
Causal Agency Theory. When eld testing is completed,
potentially by mid to late 2015, the measure will be available at http://www.self-determination.org. The Minnesota
Self-Determination Scales can be obtained by contacting
Brian Abery at the University of Minnesota, Rehabilitation
Training Center on Community Living (http://rtc.umn.
edu/rtc/). The Whose Future is it Anyway? materials can
be downloaded in PDF format online for free at http://
www.ou.edu/content/education/centers-and-partnerships/
zarrow/self-determination-education-materials/whosfuture-is-it-anyway.html. The SDCDM process and
information about the model can be found online at http://
www.ngsd.org/
References
Conclusion
Promoting the self-determination of youth and
adults with intellectual disability has become
best practice in education and rehabilitation for a
variety of reasons, as described in this chapter.
The research shows that people with intellectual
disability are less self-determined than their peers
with other disabilities and without disabilities,
and suggests that this discrepancy is a function of
the lack of opportunities many people with intellectual disability have to learn and practice skills
related to self-determination. The research is
clear that given adequate instruction and supports, people with intellectual disability can
become more self-determined, and that being
self-determined is linked, causally, to more positive school and adult life outcomes, as well as
higher quality of life and lifestyle satisfaction.
There are several assessment and instructional
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Though much progress has been made in efforts
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Ward wrote about this need in 1989, there remains
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Authors Note The Arcs Self-Determination Scale is
available for free online at http://www.ou.edu/content/
education/centers-and-partnerships/zarrow/selfdetermination-assessment-tools.html. The authors are in
the initial stages of validating a new measure of self-
21
581
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22
Telehealth
David P. Wacker, Kelly M. Schieltz, Alyssa N. Suess,
Patrick W. Romani, Yaniz C. Padilla Dalmau,
Todd G. Kopelman, John F. Lee,
and Scott D. Lindgren
Introduction
According to the Institute of Medicine (2012),
telehealth is, in part, the provision of healthcare
via the use of electronic and telecommunication
technologies. For applied behavior analysts
(herein referred to as behavior consultants), telehealth provides for substantially increased opportunities to deliver effective and empirically
validated procedures to clients, the clients family,
and other care providers. As one example,
Wacker (2013) presented a case example, Jace
(described later in this chapter), of how telehealth
can be conducted in the homes of young children
with autism spectrum disorders. During this talk
at the annual conference of the Association for
Behavior Analysis International, videos showing
the child and his mother working together on a
P.W. Romani
Munroe-Meyer Institute,
University of Nebraska
Medical Center,
Omaha, NE, USA
K.M. Schieltz
College of Education, University of Missouri,
Columbia, MO, USA
Y.C.P. Dalmau
Virginia Institute of Autism,
Charlottesville,
VA, USA
T.G. Kopelman
Department of Psychiatry,
University of Iowa Hospitals and Clinics,
Iowa City, IA, USA
585
586
History of Outpatient
and Community-Based Behavioral
Assessment and Treatment Programs
Our telehealth program is a part of the services
we provide through the BBS outpatient clinic
(Northup et al., 1991). This clinic was developed
in the mid 1980s to provide functional analyses
(FAs; Iwata, Dorsey, Slifer, Bauman, & Richman,
1994) and reinforcement-based treatments to
individuals with developmental disabilities who
engaged in severe problem behavior such as selfinjury or aggression. A large focus of the clinic
has always been consulting with families and
other care providers. However, the distance that
many of the families had to travel made it difcult to provide the intensity of individualized
coaching that some parents needed to effectively
manage problem behavior in their homes. In
addition, parents frequently had to wait for 3 or
more months to be seen in the clinic as the
demand for behavioral services in Iowa continued
to exceed the availability of those services
(Wacker et al., 2013b). This was especially distressing with very young children whose selfinjury or other severe problem behavior was just
emerging. To complicate matters further, practitioners with skills in applied behavior analysis
have historically been located mostly in a few of
the university or urban areas of the state, leaving
many families without the behavior analysis services they needed for their child. In response to
these challenges, we sought to extend the clinic
model through the delivery of in vivo in-home
and telehealth-based services to assessment and
treatment of severe problem behavior.
Home-Based Services
Beginning in the early 1990s, we received funding from the National Institute of Child Health
and Human Development (Wacker & Berg, 1992)
to work with parents in their homes to conduct
FAs of their young (up to 6 years of age) childrens problem behavior and to then implement
functional communication training (FCT; Carr &
Durand, 1985) to reduce problem behavior in
their homes. During this project, behavior consultants drove to the families homes and coached
the parents during weekly 1-h sessions to conduct
the assessment and treatment procedures. All of
the children had developmental disabilities and
most had problem behavior maintained by negative reinforcement. Harding, Wacker, Berg, Lee,
and Dolezal (2009) provided a summary and case
example of the specic FCT procedures used by
the parents. In general, treatment consisted of two
steps: (a) the child was given a direction by the
parent to complete a small task such as to stack
blocks or to point to a picture in a book, and (b)
after the task was completed, a communication
card and/or device such as a microswitch was presented to the child, who could then request an
enriched break to play. Thus, task completion produced the card/device from the parent, and touching the card/device produced an enriched break to
play with the parent.
The initial results of this project (Wacker
et al., 1998) showed that parents could conduct
these assessment and treatment procedures with
good success when they received on-site and realtime coaching from a skilled behavior consultant.
22
Telehealth
Telehealth-Based Services
As summarized by Lee et al. (2015), the University
of Iowa Hospitals and Clinics have been providing limited telehealth services since the mid
1990s. Behavior consultants began providing
telehealth consultation to local pediatricians and
school teams in 1996, when the University of
Iowas National Laboratory for the Study of Rural
Telemedicine received a grant from the US
National Library of Medicine (Kienzle, 2000).
Part of this grant was used to fund projects that
587
588
Description of Treatment or
Training Approach
Clinic-to-Clinic Telehealth Model
Model Description
The clinic-to-clinic project (Lindgren & Wacker,
2009) was the teams rst large-scale attempt to
replicate the procedures (FA plus FCT) rst conducted in vivo in the familys home (Wacker
et al., 1998, 2011) through telehealth. Therefore,
the procedures used during this project (Wacker
et al., 2013a, 2013b) were conducted as similarly
as possible to the procedures from the in-home
project. Participants were young children ages
26 years who were diagnosed with autism spectrum disorder and who engaged in problem
behavior. Behavior consultants were located at
the CDD (host site) and parents, their child, and a
parent assistant were located at one of ve participating regional pediatric clinics (remote site)
located within 50 miles of the familys home.
The regional pediatric clinic site and the CDD
site were connected through a secure videoconferencing system. Assessment and treatment procedures were conducted during 1-h weekly
consultations by the childrens parents with live
coaching from the behavior consultants.
In this section we provide a step-by step
description of the procedures used in this project
and we highlight the modications we made from
the in-home in vivo model to the telehealth clinicto-clinic model.
Step One: Determining Equipment Needs
The regional pediatric clinics had preexisting
high speed internet and videoconferencing capabilities. As part of this project, the CDD had a
four-station telehealth center that connected to
the regional clinics by a rewall-protected virtual
private network. Emblaze-VCON vPoint HD was
22
Telehealth
589
used as the videoconferencing and video recording software because it allowed for conducting
real-time (synchronous) telehealth and recording
of all sessions for subsequent data collection.
Further specications of the technology used in
the clinic-to-clinic model are described in more
detail by Wacker et al. (2013b) and Lee et al.
(2015). Prior to beginning the project, the behavior consultants became acquainted with the videoconferencing hardware (i.e., windows-based
PC, webcam, and headphones with microphones)
and software (i.e., videoconferencing and video
recording). They also conducted various test runs
and recordings to ensure that the teleconferencing and video recording technology were working properly prior to conducting evaluations in
the telehealth center.
Initial Assessments
Parent Training
Three assessments (parent interview, daily behavior record, preference assessment) were conducted prior to beginning the FA and FCT. The
purpose of these assessments was to obtain information about the childs target problem behavior
(behavior of focus during the FA and FCT, which
usually included self-injury, aggression, and/or
property destruction), to develop hypotheses
regarding the function of the target behavior, and
to identify stimuli to utilize during the assessments. These three assessments were conducted
during the rst parent meeting and the rst telehealth visit with the child.
Parent Interview
590
The behavior consultant asked the parent to collect a daily behavior record of the target behaviors for 1-week until their next meeting. This
assessment served two main purposes. First, it
helped to develop hypotheses regarding the function of the childs problem behavior and therefore
assisted in designing the FA conditions for that
child. Second, it prompted parents to consider the
function of their childs problem behavior.
Preference Assessment
22
Telehealth
Very few concerns arose during the implementation of the clinic-to-clinic telehealth project.
However, as with any service delivery model,
there are various potential problems and limitations to consider, including:
1. Access: Although the pediatric clinics were
closer to the childrens homes, the families
still had to travel to the local clinic. The travel
may pose obstacles for certain families and
may therefore limit their ability to utilize this
service. For example, families who did not
own vehicles had to identify transportation on
a weekly basis to the clinic, and families who
had limited funds had difculty paying up
front for the gas money to come to the clinic.
Additionally, families who had other children
had to secure childcare for siblings or one of
the parents had to stay home. These obstacles
may result in session cancellations or the families inability to participate in this service
delivery model.
2. Generalization: Although the parent was
coached to implement the intervention with
good delity in clinic, they still needed to
implement it in the natural setting (e.g., home,
community) without support, which may
result in treatment delity errors.
Hints
591
592
Case Examples The following two case examples (Mel and Newt) are representative of the
procedures and results from our clinic-to-clinic
telehealth project. Both childrens demographic
information and FCT data were included in summary tables in Wacker et al. (2013a).
Mel. Mel was a 30-month-old boy diagnosed
with autism spectrum disorder, mixed-receptiveexpressive language disorder, and developmental
delay. His target problem behavior consisted of
self-injurious behavior (e.g., head banging, hitting head with hard objects, hand biting), aggression (e.g., head butting), and property destruction
(e.g., throwing items). Mel was nonvocal, and his
communication consisted of walking toward the
items he wanted (e.g., approaching mothers bag,
walking toward door). Mel attended a preschool
classroom for 3 h every day. Mels father lived
halfway between the CDD and the local pediatric
clinic, and his mother lived approximately 88
miles away from the CDD and a few minutes
from the local clinic where they received telehealth consultation. Mel and one or both of his
parents attended weekly 1-h telehealth visits for
approximately 4 months.
During Mels rst telehealth appointment, the
behavior consultant coached the parent to conduct three free play sessions, which also served
as the stimulus preference assessment. Although
Mel engaged with some toys, he persistently
approached his diaper bag, which contained lollipops. Given the absence of consistent toy play,
the lollipops were selected as Mels highest preferred stimulus. Mel did not engage in target
problem behavior during the initial three free
play sessions. In addition, he did not attempt to
approach the screen on which the behavior consultants image was projected and did not seem to
22
Telehealth
593
Fig. 22.1 Results of the functional analysis completed via telehealth with Mel during his enrollment in the clinic-toclinic telehealth project
Fig. 22.2 Results of functional communication training conducted via telehealth with Mel during his enrollment in the
clinic-to-clinic telehealth project
594
22
Telehealth
595
analysis. FA sessions were conducted very similarly to the clinic-to-clinic model, including the
addition of extra free play sessions, conducted consecutively at the beginning of the FA, until near
zero occurrences of problem behavior occurred.
All FA sessions were recorded using Debut for subsequent data collection and analysis.
Functional Communication Training
596
22
2.
3.
4.
5.
Telehealth
597
598
22
Telehealth
599
600
Table 22.1 A summary of assessment and treatment results for Mel, Newt, Jace, and Billy
Assessment
Mean
% of
problem
Case
Identied FA behavior
examples function(s) in baseline
Mel
Tangible
17 %
Newt
Escape
14 %
and
tangible
Jace
Escape
9%
and
tangible
Billy
Escape,
36 %
tangible,
and
attention
Treatment
Mean % of
problem
Function(s) behavior at
targeted for the end of
treatment
treatment
Tangible
1%
Escape
3%
and
Tangible
Escape
0%
and
Tangible
Escape
0%
and
Tangible
Time
Final
%
Number TARF rating
Reduction of visits (scale 17;
in problem during
7 = highly
behavior
treatment acceptable)
92 %
6 visits
6.5
76 %
9 visits
7
Total length
of time in
project
~4 months
~3 months
100 %
4 visits
~3 months
100 %
8 visits
~3 months
22
601
Telehealth
Table 22.2 A summary of the procedural steps, benets, challenges, and hints across service delivery models
Step 1:
Determining
equipment
needs
Step 2:
Initial
meetings
Parent interview
Daily behavior record
Preference assessment
Step 3:
Evaluation
procedures
Benets
Functional Analysis
Functional
Communication
Training
Decreases in problem
behavior
High treatment
acceptability
Naturalistic setting
Access
Challenges
Hints
Clinic-to-clinic model
Equipment for both clinic
sites: computers, webcams,
headphones with
microphones, video
conferencing software, video
recording software, Internet
connection
Test runs of equipment and
software
Parent assistant training
Parent training
Clinic-to-home model
Equipment for both clinic and
home sites: computers,
webcams, headphones with
microphones, video
conferencing software, video
recording software, Internet
connection
Training on how to operate the
equipment
Parent training
Determine location of sessions
in home
Parent interview
Daily behavior record
Preference assessment
Functional Analysis
Functional Communication
Training
Parent interview
Daily behavior record
Preference assessment
Functional Analysis
Functional Communication
Training
Decreases in problem
behavior
High treatment acceptability
Cost effectiveness
Increased access and
efciency
Access
Generalization of procedures
Immediate feedback
Capability to control camera
Number of sessions per visit
Child sensitivity to
consultation
Cost effectiveness
Increased accessibility,
convenience, and productivity
Naturalistic setting
Technical challenges
Implementation considerations
Insurance reimbursement
Advanced preparation
Immediate feedback
IT support
Number of sessions per visit
Child sensitivity to
consultation
602
Applications of Telehealth-Based
Services Across Healthcare
Much of the current research in telehealth focuses
on demonstration of the feasibility of service
delivery in a particular eld or using a particular
method. For instance, several studies focused on
the feasibility and accuracy of providing screening or consultation to patients who presented to a
clinic with referral for specic concerns or for
routine care. The concerns or care addressed in
these studies varied across the healthcare eld,
and included mental health (Southard et al.,
2014), ocular health (Maa, Evans, DeLaune,
Patel, & Lynch, 2014), and speech, language, and
hearing health (Ciccia, Whitford, Krumm, &
McNeal, 2011). One selected study evaluated the
effectiveness of providing an evidence-based parent training program via telehealth (Reese, Slone,
Soares, & Sprang, 2012). Another selected publication discussed the benets and limitations of
utilizing telehealth with military personnel in
need of care regarding mental health concerns
while deployed in a combat environment (Dailey
& Stanfa-Brew, 2014).
For those studies evaluating the feasibility and
accuracy of providing screening or consultation
via telehealth, results have been generally positive. For example, Southard et al. (2014) showed
that for patients who presented to a rural hospital
emergency room (ER) for various mental health
concerns (e.g., attempted suicide, nonspecic
pain) resulting in a mental health consultation,
various dependent measures improved when telehealth was provided from a community mental
health provider located 1535 miles away from
the rural ER. The specic benets were: (a) the
reduced amount of time from the ordered consult
to consultation from the community mental
health provider, (b) the reduced amount of time
from the patients arrival in the ER to consultation from the community mental health provider,
and (c) the reduced length of the hospital stay
from arrival to discharge. Similarly, National
Public Radio (NPR) recently released a story
(Feibel, 2015) about Houston reghters connecting with doctors using a video chat application to assess the immediacy of a visit to the ER
22
Telehealth
during 911 house calls. By connecting with doctors via telehealth, the medical concern could be
assessed and triaged to the appropriate clinic
such as an outpatient primary care clinic rather
than the ER.
Ciccia et al. (2011) and Maa et al. (2014) have
also evaluated the feasibility and accuracy of
screening individuals for concerns related to their
respective specialty elds when those screenings
are conducted via telehealth. Ciccia et al. (2011)
showed that speech, language, and hearing screening via telehealth for children up to 6 years old was
feasible, reliable, and strongly supported by the
families. Specically, pure tone hearing screening,
speech-language screening, and Distortion Product
Otoacoustic Emissions (DPOAE) screening were
found to be 100 % reliable across screenings
administered in-person compared to those administered via videoconferencing. An additional
screening, typanometry, was administered and
shown to be 84 % reliable across the different
modes of administration. Similarly, Maa et al.
(2014) found a high correlation between face-toface ocular exams and tele-eye exams for detecting common ocular diseases (i.e., cataract, macular
degeneration, glaucoma) in elderly patients.
Another area of healthcare research has
focused on the effectiveness of delivering
evidence-based practices via telehealth. Reese
et al. (2012) implemented the Group Triple P
Positive Parenting Program (Turner, Dadds, &
Sanders, 2002) via telehealth with low socioeconomic status families from the Appalachian
region of Kentucky where children were experiencing behavioral, emotional, or family problems.
Results showed that the childrens externalizing
behaviors decreased, the parents distress levels
decreased, and the parents skills and self-efcacy increased, suggesting that this evidencebased group parenting program can be
implemented successfully via telehealth.
Dailey and Stanfa-Brew (2014) discussed how
a telehealth service delivery model was utilized
in combat environments. They discussed that in
combat environments, behavioral health ofcers
or the patient have to travel across dangerous
areas to receive service in person, and this travel
is often time-consuming. By using telehealth to
603
Applications of Telehealth-Based
Services Across Applied Behavior
Analysis
The rst generation of telehealth research in
applied behavior analysis focused on two major
themes: (a) the effectiveness and feasibility of
behavior analytic procedures and outcomes
(Machalicek, OReilly, Chan, Lang, et al., 2009;
Wacker et al., 2013a, 2013b), and (b) delivery of
consultation and training for service providers
and parents in behavior analytic procedures
(Fisher et al., 2014; Frieder, Peterson, Woodward,
Crane, & Garner, 2009; Gibson, Pennington,
Stenhoff, & Hopper, 2010; Hay-Hansson &
Eldevik, 2013; Heitzman-Powell, Buzhardt,
Rusinko, & Miller, 2014; Machalicek et al.,
2010; Machalicek, OReilly, Chan, Rispoli, et al.,
2009; Suess, Romani, et al., 2014). Studies on the
effectiveness and feasibility of delivering behavior analysis via telehealth have demonstrated that
behavior analytic procedures can successfully be
implemented in real-time while expert practitioners are not physically present. For example,
Machalicek, OReilly, Chan, Lang, et al. (2009)
evaluated the effects of behavior intervention
plans on challenging behavior that were developed based on the results of FAs conducted via
telehealth and showed that challenging behavior
decreased when that behavior intervention plan
was implemented. These results suggested that
the results of FAs obtained via telehealth can be
just as useful for treatment development as the
results obtained from FAs conducted in vivo.
Behavior analytic studies on the use of telehealth have often focused on consultation and
604
school personnels implementation of the intervention was shown to occur with high delity,
and the students challenging behavior was
shown to decrease.
Training has also been provided during the
implementation of behavioral assessments and
interventions. For example, Machalicek,
OReilly, Chan, Rispoli, et al. (2009) and
Machalicek et al. (2010) demonstrated that preservice teachers and licensed teachers implemented preference assessments and FAs,
respectively, with accuracy when receiving realtime coaching and feedback via telehealth.
Similarly, Hay-Hansson and Eldevik (2013)
showed that real-time coaching and feedback via
telehealth was effective when training service
providers to conduct discrete trial training with
children with autism spectrum disorder.
The overall ndings of telehealth as a service
delivery and training model for behavior analytic
procedures are positive: it is both effective and feasible. Behavior analytic studies on telehealth have
noted numerous benets including (a) the effectiveness of this service delivery model in training
direct service providers and parents (Fisher et al.,
2014; Frieder et al., 2009; Gibson et al., 2010;
Hay-Hansson & Eldevik, 2013; Heitzman-Powell
et al., 2014; Machalicek et al., 2010; Machalicek,
OReilly, Chan, Rispoli, et al., 2009), (b) an alternative method for providing supervision and training (Fisher et al., 2014; Hay-Hansson & Eldevik,
2013), (c) increased savings related to time and
money for direct service providers, parents, and
behavior analytic specialists (Fisher et al., 2014;
Gibson et al., 2010), (d) increased access to service and specialist support (Gibson et al., 2010;
Heitzman-Powell et al., 2014; Machalicek,
OReilly, Chan, Lang, et al., 2009; Machalicek,
OReilly, Chan, Rispoli, et al., 2009), (e) increased
abilities of direct service providers and parents in
implementing behavior analytic procedures
(Frieder et al., 2009; Heitzman-Powell et al.,
2014), and (f) decreased occurrence of observer
effects (Gibson et al., 2010).
Although there are a number of benets to providing behavior analytic services via telehealth,
there are also many challenges that have been noted
that need to be considered when developing or con-
22
Telehealth
605
606
Practice Recommendations
Although telehealth provides a variety of benets
including increased access and efciency of services, it is our impression that telehealth may not
be benecial or best practice in all situations. For
example, a few children in our clinic-to-home
telehealth project engaged in a level of problem
behavior that was deemed unsafe for remote evaluation and treatment. In these cases, the behavior
consultants felt more comfortable providing the
services in vivo where they could physically help
control the situation. Thus, service provided via
telehealth was discontinued, and in vivo services
were initiated. Similarly, we have struggled to
obtain satisfactory treatment results with children
whose problem behavior is maintained by automatic reinforcement. To match children to the
treatment most likely to be effective, we provide
a step-by-step decision tree of issues to consider
22
Telehealth
607
Fig. 22.3 A decision-making model for choosing between service delivery models
608
Step-by-Step Checklist
of Recommendations
for Practitioners
After determining that telehealth service delivery
is most appropriate, several steps warrant consideration when developing the service. Within
these steps, we provide areas for consideration
and additional tips or questions to ask when
developing a telehealth service. This checklist is
summarized in Table 22.3. Specics of these
recommendations will depend upon the type of
service provided via telehealth. For example, if
only face-to-face consultation is provided, a
wide-angle camera is not necessary. In contrast, a
wide-angle camera is necessary for services that
attempt to capture large motor movements such
as a child running around a room.
Table 22.3 A checklist of recommendations for practitioners when developing a telehealth service
Steps
Determining
Equipment
Needs
Consideration
1. Equipment needs to
achieve adequate
audio and video
quality for both sites
Additional tips/questions
Is the remote site required to have equipment or will the host site
provide it?
Are Ethernet cables needed?
Are external webcams or wireless cameras needed?
Is Bluetooth technology needed?
What videoconferencing software will be used?
Is the remote site required to have an Internet connection?
What are the optimal bandwidth speeds for the desired audio and
video quality?
Is an IT support person needed?
22
Telehealth
Steps
Determining
the Initial
Setup of
Telehealth
Service
609
Consideration
1. Initial technology
meeting to learn how
to use, test, and
troubleshoot any
initial problems with
the equipment
2. Logistics of providing
telehealth
Additional tips/questions
Are task analyses of how to connect with the host telehealth site
necessary?
Determining
the
Telehealth
Services
Procedures
6. Benets of an initial
in-person meeting
1. Preparing for a visit
2. Starting a visit
3. Procedures during
a visit
4. Procedures at the
conclusion of a visit
5. Follow-up procedures
610
22
Telehealth
611
Summary
Telehealth can be an effective service delivery
model for a variety of concerns that traditionally
have been addressed in-person by professionals
in their clinic ofces or classrooms. Telehealth
provides an alternative to this in-person model
with the greatest benets including increased
access and efciency and decreased costs.
Although telehealth can be effective and feasible,
it is unlikely that telehealth will replace traditional in-person models. Rather, telehealth can
serve as a supplement to traditional service models or as an alternative service option when both
traditional and telehealth models are equally
effective. Given that these models are all reasonable options for delivery of behavioral services, it
becomes imperative that practitioners weigh the
benets and challenges when choosing a service
delivery model. Similarly, it is important for
researchers to continue evaluating the conditions
under which telehealth is most effective in order
to inform clinical decision-making in practice.
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23
Introduction
This chapter presents an evidence-based
approach for the assessment and training of parenting skills in persons with intellectual disabilities (ID). Note that the formal diagnostic term,
intellectual disabilities is used throughout
this chapter, but we also include parents with
borderline intellectual and cognitive difculties,
because much of the literature includes parents
with IQs between 70 and 80. Research clearly
shows that parents with ID can improve childcare skills and parentchild interactions through
behavioral skills training with corresponding
benets to their children (Feldman, 1994; Wade,
Llewellyn, & Matthews, 2008). Nonetheless,
parents with ID are at increased risk of having
their children removed from the home because of
concerns, justiable or not, of the potential for
child maltreatment, particularly child neglect
(Booth, Booth, & McConnell, 2005; Llewellyn,
615
616
Contextual Model
While the focus of this chapter is parenting skills
training, it is important to recognize that many
contextual factors, besides training techniques
used, may inuence parenting behaviors and
response to intervention (Feldman, 2002;
Feldman & Aunos, 2010). The contextual model
(called a parenting interactional model in our
previous work, Feldman, 2002; Feldman &
Aunos, 2010) underlies the Step-by-Step
approach. The model incorporates ecological
(Belsky, 1993; Bronfenbrenner, 1989) and
behavior analytic principles (Cooper, Heron, &
Heward, 2007) to identify internal and external
factors affecting parenting behaviors and the
most effective way of measuring and teaching
parenting skills. A parent trainer working with
parents with ID should consider these contextual
variables when designing assessment and intervention plans.
Behavior does not occur in a vacuum. In order
to understand why some parents lack parenting
skills or appear not to cooperate with services, it
is crucial to determine the specic context or
ecological niche within which each family is
functioning (Belsky, 1993; Bronfenbrenner,
1989). Context refers to a combination of the current events/experiences that surround that individual and the past history of that individual
(Morris, 1988). To understand current (parenting)
behavior, an ecological perspective pinpoints risk
and resilience variables while a behavior analytic
perspective identies motivating operations that
have reinforcer value-altering and behavioraltering effects (Michael, 2000). Motivating
operations indirectly increase (establishing operation) or decrease (abolishing operation) frequency of certain behaviors due to their inuence
on the effectiveness of a reinforcer (Michael,
2000). Wahler (1980) provides an elegant example of the impact of contextual inuences on parenting behavior. He found that the insular mothers
were more likely to follow a behavioral program
for their children if the mothers had positive
interactions with friends earlier that day (establishing operation) and less likely to follow the
program when they had negative interactions
with family or workers (abolishing operation).
23
617
Table 23.1 Example of a Step-by-Step task analysis
checklist (adapted from Feldman & Case, 1993)
Bottle feeding
1. Gets a full bottle and a towel.
2. Tests the temperature of the formula on her wrist.
3. If the formula is cold, puts the bottle in a pan of
hot water for 2 min. Tests again.
4. If the formula is too warm, puts the bottle in a pan
of cold water for 2 min. Tests again.
5. Tests the nipple ow by tilting the bottle down on
her hand.
6. Replaces nipple if it ows too fast or too slow.
7. Goes to a comfortable, quiet place for feeding.
8. Sits down and cradles the baby so that her head is
higher than her tummy. Does not prop the bottle.
9. Gently puts the nipple into the babys mouth.
10. Tilts the bottle so that the nipple is always lled
with formula.
11. If the baby coughs or chokes, immediately stops
feeding and sits her up.
12. Pulls the nipple out a little sometimes to help the
formula ow.
13. When the bottle is half empty, stops feeding and
burps the baby.
14. Holds the baby and begins feeding again.
15. Stops feeding when the baby turns away, spits out
milk, and refuses to take the nipple when trying a
few more times.
16. Does not force the baby to drink any more.
17. Burps the baby again.
18. Throws out leftover formula.
19. Talks, sings, and cuddles the baby during and after
the feeding.
Observing Skills
Prior to starting the skills assessment, it is important to consider contextual factors as described
above. Then the parent educator should focus
on developing trust and rapport with the parent.
618
23
619
620
Call in advance of leaving for the scheduled home visit to make sure parent is home.
Be preparedbring checklists, materials, props needed.
Build rapportstart with positive (but short) comment or conversation (Is that a new outt? She looks adorable in it.).
Give simple rationale for why the skill needs to be trained (e.g., It is important to sterilize the baby bottles because it kills the germs that could make your baby sick);
Try to relate to parents life experience (e.g., Dont you feel good when someone tells you that you are doing a good job? Your child likes to hear your praise, too.).
5. Use checklists that break down the skill and directions into specic and concrete steps/components.
6. Conduct at least one baseline observation by recording skill performance before starting training to determine overall percentage correct and which steps need training.
7. Only train one skill at a time to start. Gradually add more skills training in a session, if the parent can handle it.
8. When starting training on a skill, give simple and clear instructions.
9. Question the parent to ensure comprehension of instructions or explanations.
10. Initially focus on and praise what the parent is doing correctly (e.g., I really like how you are serving your child some peas; thats a healthy choice.)
11. Gradually intersperse non-judgmental, but specic corrections (e.g., Dont forget to clear in the creases when wiping the babys bottom.).
12. Try to give at least three positive feedback statements to every one corrective statement.
13. Provide correction within 5 s of an incorrect or missed step.
14. Give accurate and consistent feedback in a constructive manner.
15. Use one or more of the following prompting techniques in training as needed: (a) verbal instructions, (b) modeling, (c) roleplaying, (d) physical guidance, and (e)
permanent promptse.g., Step-By-Step picture books and audio (Feldman & Case, 1993), posters, daytimers.
16. Record which prompt was needed for which step on the checklist.
17. Model missed steps, and explain while modeling, as needed (e.g., Watch me copy him when he says a word; that will help him learn to talk.).
18. Then allow parent to try again as soon as possible after the model.
19. Ask parent to practice several times.
20. Debrief parent within 1 min of task completion.
21. During debrieng, point out what the parent did correctly (I really like the way you remember to praise him.), and then focus on what the parent should be practicing,
rather than dwelling on errors (Remember to repeat his words.).
22. Program for generalizationremind parent to use skills whenever and wherever needed (e.g., Dont forget to praise your child for good behavior wherever you are.).
23. Program for generalizationconduct training in different rooms and outside, as appropriate.
24. Check maintenance of previously learned skills using the observational checklists. Gradually fade observations of mastered skills, if maintaining at mastery criterion.
25. End visit on a positive note about the parents performance (e.g., You got more steps correct today on the home safety checklist. I see you remembered to put all
medications in a locked cabinetbravo!).
26. Call between visits to remind parent to practice skill, if necessary, and the schedule for the next visit.
1.
2.
3.
4.
Table 23.2 Task analysis of instructions for how to provide full behavioral skills training to teach parenting skills to parents with ID
23
Skills Training for Parents with Intellectual Disabilities
621
622
GIVING
1. Get a full
a towel.
The towel
burping.
2. Test the
wrist.
It should
skin, not
cold.
baby
is for
formula
YOUR BABY
bottle
spills
A BOTTLE
and
and
on your
Fig. 23.1 An example of one page of a picture book from Feldman and Case (1993)
23
623
624
Training Variations
Group training for personal well-being and social
relationships. As described above, contextual
models proposed by Feldman (2002) and others
(e.g., Wade et al., 2011) highlight the inuence of
parental well-being and social support on parenting and child outcomes. While most intervention
studies have focused on improving parenting
skills and parentchild interactions, two studies
examined parent groups to improve personal wellbeing, social engagement and goal attainment in
parents with ID (McConnell et al., 2008; McGaw,
Ball, & Clark, 2002). Although McConnell
et al.s (2008) intervention was designed following Freires (1998) adult learning principles and
empowerment while McGaws et al. (2002) was
based on cognitive behavior therapy, both teams
used similar teaching methods, including selfreection, visual representations, task analysis,
goal-planning, and problem-solving strategies.
Results in both studies were mixed, with parents
in the training groups showing some improvement
in achieving goals and well-being (McConnell
et al.), and self-concept and social relationships
(McGaw et al.). As neither study used strong
experimental designs and relied exclusively on
parent self-report, results should be interpreted
cautiously. Nonetheless, the preliminary results
are sufciently promising to warrant further
research in this area.
Game formats. Three studies have used game
formats to teach parentchild interaction skills to
parents with ID (Bakken et al., 1993; Fantuzzo,
Wray, Hall, Goins, & Azar, 1986; Tahir et al.,
2015). The game sessions involved taking turns to
draw cards and roleplay specic parenting
scenarios. While Fantuzzo et al. (1986) showed
improvement in responses during the game, in a
systematic replication, Bakken et al. (1993) did not
nd increases in parenting skills in the home
(in situ generalization) until the parent was trained
in the home using behavioral skills training (cf.,
Feldman et al., 1986). (Tahir et al. 2015) found
within game generalization (to untrained scenarios), but mixed effects of in situ generalization of
parenting skills and in-home child behavior.
23
Future Research
While intervention studies with parents with ID
started being published in the 1980s, there are
still many gaps in identifying components of
effective interventions, generalization effects,
long-term benets to the parents and children,
applications of technology and wide-spread
adoption and implementation of evidence-based
programs. Future research is needed on the benets
of video modeling and feedback, identifying
625
Case Study
Anne is a parent who participated in the Family
Game training program, which is designed for
parents with intellectual disabilities who have
preschool and school-age children with behavior
problems (Feldman, 2004b; Tahir et al. 2015).
Anne was a 42-year-old single mother receiving
government nancial support for having an intellectual disability at the time of training. She lived
with her 20-year-old daughter who also had an
intellectual disability and her 10-year-old son
who was diagnosed with ADHD and Oppositional
Deant Disorder. Anne participated in the Family
Game program due to behavioral challenges she
was facing with her son, specically noncooperation with instructions during home routines.
Some other variables that affected Annes
parenting success included a history of marital
problems and ongoing negative contact with her
former spouse, lack of experience with positive
parenting practices and her own upbringing
(i.e., she often mentioned, this is how my
mother taught me). Due to her complex family
situation, Anne was involved with several other
services, including adult community support for
herself (e.g., help with nancial planning, housing), behavioral intervention for her daughter and
mental health services for her son. Some of the
parenting practices Anne was using prior to
involvement in the Family Game included incorrect use of response cost (e.g., removing several
privileges for many days), arguing or shouting in
an effort to get her son to cooperate with an
instruction or using physical restraint as a last
resort (e.g., holding her son down if he was
626
Practice Recommendations
Thirty years of research has identied empirically supported assessment and intervention
approaches for improving parenting skills in parents with ID. As described in this chapter, these
strategies are based on behavior analytic principles that emphasize individualized skill-based
assessments and behavioral skills training. Given
the current state of knowledge, this section summarizes best practice in supporting parents with
intellectual disabilities.
1. Establish Rapport. Before starting assessment and training, the trainer should build
rapport with, and gain the trust of, the family.
Among other things, a positive relationship
may increase the value and effectiveness
of the trainers advice and feedback to the
parent.
2. Parenting Skills Assessment. Conduct a
comprehensive parenting assessment based
on an objective evaluation of specic parenting skills (Feldman & Aunos, 2010).
Assessments should include direct observations of parenting behavior to determine the
exact skills in which parents need further
training.
3. Contextual Assessment. In addition to the
skills assessment, contextual, ecological factors
(e.g., parental history, health and social support;
family structure, accommodations and economic status; child health, development and
behavior) that may impede or support successful parenting and response to intervention
should be examined. The contextual assessment
can be used to identify other supports and services besides parent training that will increase
likelihood of positive outcomes.
4. Behavioral Skills Training. Formulate parent
training interventions using evidence-based
behavior analytic teaching methods. Skill-based
23
627
(g)
(h)
(i)
(j)
628
Conclusion
This chapter presents the current evidence base
showing that parents with intellectual disabilities
can be taught to improve a multitude of parenting
skills. We present an objective method of comprehensive assessment to identify intervention
targets as well as outline well-documented training components that make parent education programs successful. Practice recommendations for
parent educators are also provided in order to
improve future service delivery. However, further research is still needed in regard to remaining intervention gaps such as best generalization
strategies, long-term benets of parent training
for children of parents with intellectual disabilities, and large-scale evaluations of parenting programs to inuence more progressive policies,
practices, and funding of programs.
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Part III
Evidence-Based Interventions
24
Self-Injury
Theodore A. Hoch, Carl R. Dzyak,
and Brian L. Burkhalter
Introduction
Self-injurious behavior (SIB) is a problem that
seriously affects the lives of those who exhibit
this behavior, as well as family members and
staff who care for them. This behavior can lead to
hospitalization for injuries incurred by it, injuries
incurred by others who are intervening in management of this behavior, or hospitalization for
assessment and treatment of the behavior. Indeed,
SIB has been cited as the primary reason for hospitalization of children diagnosed with autism
(Mandell, 2008). Additionally, SIB can impede
educational and vocational progress of those
exhibiting it, and can impede acquisition of leisure skills and curtail ones involvement in community activities. If untreated, SIB is likely to
persist over the lifetime of the individual (Furniss
635
636
History
Ones assessment and conceptualization of a
problem determines ones approach to treating it.
In an article published in American Journal of
Psychology in 1899, G. S. Hall reported on a
child who would cause lacerations to her face
through scratching. He further describes lip and
hand biting, head banging, and self-choking as
being emitted by those with severe intellectual
disability. Hall reported that this type of behavior
occurred most commonly in children between 2
and 9 years of age, and that the behavior generally would remit by 14 years of age. Considering
this behavior to be a product of anger turned
inward, which, itself, was a product of selfimportance or selshness. Similarly, Nurnberg
(1934) considered self-injury to be the product of
an underdeveloped superego.
Functional analysis of self-injurious behavior
had its start in 1965, when Lovaas, Freitag, Gold,
and Kassorla reported on environmental manipulations from which they determined that the selfinjury exhibited by a 9-year-old child diagnosed
with schizophrenia occurred more frequently in
low stimulation conditions than it did when music
was provided and alternative behavior was reinforced. Later, Carr (1977) contrasted a psychodynamic account of self-injury, which was essentially
tautological, with a conceptualization of self-injury
as an operant behavior maintained by positive,
negative, or nonsocially mediated reinforcement,
or etiologically related to physiological function.
Carr then laid out the framework for functional
24 Self-Injury
Denition
SIB has been dened in a number of different,
but similar ways over the years. Tate and Baroff
(1966) dened SIB as repetitive acts by individuals directed toward themselves which result
in physical harm or tissue damage. Schroeder,
Mulick, and Rojahn (1980) dened self-injury as
behaviors directed toward oneself that cause or
have potential to cause tissue damage. Baghdadli,
Pascal, Grisi, and Aussilloux (2003) dened SIB
as aggressive behaviors directed toward ones
self. Rojahn, Schroeder, and Hoch (2008)
described SIB as self-directed behavior that
causes or has the potential to cause physical damage, and which occurs repeatedly, in idiosyncratic form. Glasser and Perkins (2013) dene
SIB as a nonsuicidal, repetitive, and deliberate
condition whereby an individual causes injury,
tissue damage, or both to his or her body.
Minshawi et al. (2014) dene SIB as a class of
behaviors which the individual inicts upon his/
herself that have potential to result in injury, more
specically tissue damage. While various
authors may approach this problem from differing epistemological vantage points, what the
denitions have in common is that the behavior is
emitted by the person whose body is also the
object of that behavior, and that the behavior
causes or has potential to cause physical harm to
637
Authors
Lovaas et al. (1965)
Distraction
Overcorrection by contingent
exercise
Overcorrection
Functional analysis
Observational
analysis
Observation and
staff interview
Not reported
Extinction, DRO
Contingent aeromatic ammonia
Negative punishment
Contingent electric shock
DRO + Verbal reprimand
DRO + Contingent
Relaxation + Contingent exercise
Not reported
Not reported
Pre-intervention
treatment evaluation
Not reported
Not reported
Not reported
Not reported
Positive punishment
Not reported
Not reported
Not reported
Not reported
Contingent electric
shock + Extinction
Contingent electric
shock + DRO + DRA
DRO
Functional analysis
Thought stopping,
desensitization,
relaxation training
Antecedent based
intervention
Environmental
modication
Not reported
Pre-intervention
assessment
Functional analysis
Not reported
Not reported
Not reported
Not reported
Reported at 12 weeks
Reported at 21 days
Reported at 6 months
Reported at 1 year
Not reported
Not reported
Not reported
Reported up to 2 years
Not reported
Not reported
Not reported
Not reported
Post-experimental follow-up
Not reported
638
T.A. Hoch et al.
Functional analysis
Not reported
Helmet barrier
Not reported
FCT
Not reported
Functional analysis
Not reported
DRA
Overcorrection + DRA
Environmental
enrichment
Not reported
Not reported
Not reported
In vivo desensitization
across situations
Restraint fading
Not reported
Not reported
Overcorrection
Not reported
Not reported
Not reported
Not reported
Stimulus control
Overcorrection + Spoken
reprimand
Positive punishment + DRO
Not reported
(continued)
Reported at 6 months
Not reported
Reported up to 5 months
Reported at 14 days
Not reported
Reported at 1 year
Not reported
Not reported
Reported up to 15 months
Reported up to 6 months
Reported up to 12 months
Reported up to 18 months
Not reported
Not reported
24 Self-Injury
639
Vollmer, Iwata,
Zarcone, Smith, and
Mazaleski (1993)
Williams, KirkpatrickSanchez, and Iwata
(1993)
Goh and Iwata (1994)
Linscheid, Pejeau,
Cohen, and FootoLenz (1994)
Williams, KirkpatrickSanchez, and Crocker
(1994)
Zarcone, Iwata,
Mazaleski, and Smith
(1994)
Mazaleski, Iwata,
Vollmer, Zarcone, and
Smith (1993)
Van Houten (1993)
Escape extinction
Contingent electric shock
Contingent electric
shock + DRO + DRA
Extinction
Functional analysis
Observation and
interview
Functional analysis
Functional analysis
High-p sequence
DRO
Not reported
Functional analysis
Functional analysis
Negative reinforcement
Negative reinforcement, guided
compliance
DRO
Functional analysis
Functional analysis
Functional analysis
Functional analysis
FCT
Extinction, physical Guidance,
response blocking, DRO
Functional analysis
Functional analysis
None reported
Luiselli (1986)
Not reported
Reported up to 6 years
Not reported
Reported at 1 year
Not reported
Not reported
Reported at 5 months
Reported at 6 months
Not reported
Reported up to 17 months
Not reported
Reported up to 6 months
640
T.A. Hoch et al.
Functional analysis
DRA
DRA (Functional
Communication Training)
Functional analysis
Neutralizing routine
(MO modication)
FT delivery of
preferred stimuli with
a COD, scheduled
instructions
NCR
Functional analysis
Functional analysis
Observation
Functional analysis
Functional analysis
NCR, warning
stimulus
Neutralizing routine
(MO modication)
Functional analysis
Functional analysis
Response blocking
with glasses
NCR
Functional analysis
Interview
noncontingent escape
Not reported
Not reported
Not reported
Not reported
(continued)
Reported at 17 months
Not reported
Reported at 10 months
Not reported
Not reported
Not reported
Not reported
Not reported
DRNA, DRNO
Functional analysis
Not reported
Hypotheses
developed on basis
of observations and
attempted
Functional analysis
Functional analysis
Not reported
Negative punishment
Functional analysis
24 Self-Injury
641
DRO
Variable momentary DRO
Functional analysis
Noncontingent access
to self-restraint
material
Functional analysis
Functional analysis
Interview
Functional analysis
Positive reinforcement
Response blocking
Functional analysis
Positive reinforcement extinction
(FCT), punishment, DRO
Contingent electric shock
Observation
Contingent exercise
Linscheid and
Reichenbach (2002)
MacDonald, Wilder,
and Dempsey (2002)
Kurtz et al. (2003)
Restraint fading,
environmental
enrichment
Functional analysis
Not reported
Not reported
Reported at 7 months
Not reported
Reported at 5 years
Not reported
642
T.A. Hoch et al.
24 Self-Injury
643
Myers (1975)
Tanner and Zeiler (1975)
Harris and Romanczyk (1976)
Participants
9-year-old girl with schizophrenia
Authors
Lovaas et al. (1965)
Topography
Head banging, arm banging, self-pinching, selfslapping, setting own hair on re
Facial slapping; hitting own chin, ears, and side of
head; jabbing his teeth; nger and hand sucking;
banging head, teeth, and feet against side of crib
Punching own head, banging head with knee, banging
head on side of bed
644
T.A. Hoch et al.
Singh (1980)
Fleming and Nolley (1981)
Luiselli et al. (1981)
Azrin et al. (1982)
Face slapping
Head hitting, hand biting, eye gouging
24 Self-Injury
645
OReilly (1997)
Fisher et al. (1998)
Facial slapping
Head and body hitting, head banging, hand mouthing
646
T.A. Hoch et al.
Skin picking
Skin picking
24 Self-Injury
647
648
24 Self-Injury
649
Authors
Lovaas et al. (1965)
Bailey and Meyerson (1969)
Lovaas and Simmons (1969)
Evidence Standards Met
with Reservations
Evidence Standards Not Met
Evidence Standards Not Met
Evidence Standards Not Met
Evidence Standards Met
with Reservations
Evidence Standards Not Met
Evidence Standards Not Met
Evidence Standards Not Met
Evidence Standards Not Met
Evidence Standards Not Met
Evidence Standards Met
Evidence Standards Not Met
Evidence Standards Met
Evidence Standards Met
Evidence Standards Met
with Reservation
Evidence Standards Not Met
Evidence Standards Met
Evidence Standards Met
with Reservation
Evidence Standards Not Met
Evidence Standards Met
Evidence Standards Met
Evidence Standards Not Met
Table 24.3 Degree to which Evidence Standards and criteria met by study
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
Yes
Yes
Experimenter
controlled IV
Yes
Yes
Yes
No
Yes
Yes
Yes (% sessions not
reported)
No
No
No
Yes (% sessions not
reported)
No
No
Yes (<20 % of sessions)
No
No
Yes
No
Yes
Yes
Yes (% sessions not
reported)
Yes (<20 % of sessions)
Yes
Yes (<20 % of sessions)
IOA reliability
No
No
Yes (# sessions not
reported)
Yes (>20 % of sessions)
Yes
Yes
Yes
No
No
Yes
Yes
Yes
No
No
No
No
Yes
Yes
Yes
Yes
Yes
No
No
No
Yes
Yes
Demonstrates
functional control
No
No
No
650
T.A. Hoch et al.
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes (<20 % of sessions)
Yes
Yes
Yes
Yes
Yes
Yes
Yes (<20 % of sessions)
Yes
Yes
Yes
Yes (<20 % of sessions)
Yes (<20 % of sessions)
Yes
Yes
Yes
Yes (% sessions not
reported)
Yes (<20 % of sessions)
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
Yes
Yes
No
Yes
Yes
Yes
Yes
Yes
Yes
(continued)
24 Self-Injury
651
Table 24.3 (continued) Degree to which Evidence Standards and criteria met by study
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes (<20 % of
observations)
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
652
T.A. Hoch et al.
24 Self-Injury
Antecedent Interventions
Antecedent-based interventions involve managing discriminative stimuli, motivating operations,
and setting events found to be functionally related
to the self-injury. Such interventions can include
providing noncontingent access to stimuli that
function as reinforcers (Healy et al., 2001;
Mace et al., 1998; Vollmer et al., 1993); altering
653
Procedure
Positive punishment
Limited evidence
Limited evidence
Limited evidence
Limited evidence
Limited evidence
Limited evidence
Limited evidence
Limited evidence
Limited evidence
1
1
1
1
1
6
Moderate evidence
Number
of studies
12
Moderate evidence
Degree of
evidence
Moderate evidence
Authors
Tanner and Zeiler (1975), Kelly and Drabman
(1977), Singh (1980), Luiselli et al. (1981),
Bailey et al. (1983), Linscheid et al. (1990),
Williams et al. (1993), Linscheid et al. (1994),
Mudford et al. (1995), Fisher et al. (1998),
Linscheid and Reichenbach (2002), Salvy
et al. (2004)
Corte et al. (1971), Colemand et al. (1979),
Dorsey et al. (1980), Johnson et al. (1982),
Wesolowski and Zawlocki (1982)
Foxx and Azrin (1973)
1
1
1
1
1
5
Number of
independent
research teams
10
1
1
1
1
1
9
17
Total number
of participants
16
654
T.A. Hoch et al.
Functional communication
training + Punishment + Differential
reinforcement
Functional communication training +
Delay in access to preferred event
Contingent application of protective
equipment
Systematic protective equipment
fading
Contingent application of protective
equipment + Differential
reinforcement
Noncontingent reinforcement +
Warning stimulus + Extinction
Noncontingent
reinforcement + Schedule instructions
Noncontingent
reinforcement + Differential
reinforcement
Motivating operation manipulation
Extinction + Physical
guidance + Response
blocking + Differential reinforcement
Noncontingent reinforcement
4
1
Limited evidence
Limited evidence
Limited evidence
Limited evidence
Limited evidence
Limited evidence
Limited evidence
Limited evidence
Luiselli (1986)
Limited evidence
Limited evidence
1
Moderate evidence
Limited evidence
30
24 Self-Injury
655
656
24 Self-Injury
657
Consequence Interventions
Consequence based interventions have been a
xture in treatment of problem behavior since at
least the 1960s. These interventions involve
delivery of punishers, delivery of reinforcers,
removal of reinforcers, removal of punishers, or
prevention of consequences that theretofore followed the targeted behavior; as well as interventions such as response interruption, contingent
prompting, and contingent use of protective
equipment. Of the 60 studies involving consequence based interventions reviewed, 32 (or 53 %)
involved punishment procedures, 30 (or 50 %)
involved reinforcement-based procedures, seven
658
24 Self-Injury
659
660
24 Self-Injury
combined
contingent
physical
exercise
(overcorrection) with differential reinforcement
and report substantial reductions in self-injury
for all participants across two settings (Coleman
et al., 1979), and that positive punishment combined with differential reinforcement was more
effective than differential reinforcement alone
(Johnson et al., 1982). Finally, Wesolowski and
Zawlocki (1982) report that contingent exercise
plus differential reinforcement of other behavior
was superior to auditory time out plus DRO,
auditory time out alone, and response blocking in
reducing eye poking in their two participants, and
that the reductions were maintained 1 year later.
Positive punishment + a warning stimulus.
Foxx and Azrin (1973) applied contingent exercise (overcorrection) to hand mouthing exhibited
by four children with intellectual disability, and
found substantial reductions in each case. In
preparation for generalization of this reduction to
non-experimental environments, these researchers delivered a warning stimulus (e.g., a stern,
No) contingent on a topography precurrent to
hand mouthing. If the precurrent response terminated at that point, and hand mouthing did not
follow, then no overcorrection was applied.
If, however, the precurrent behavior continued,
or handmouthing occurred, overcorrection was
applied. Foxx and Azrin (1973) report the warning stimulus acquired inhibitory stimulus control,
and was effective in other environments in
preventing occurrence of the hand mouthing.
Positive punishment + protective equipment
fading + environmental enrichment. Kahng et al.
(2001) reduced a targeted self-injury topography
through contingent application of protective
equipment. They observed, however, collateral
increases in other self-injurious responses.
Environmental enrichment in the form of provision of leisure materials did little to reduce this
collateral SIB, but substantial reductions were
observed when contingent exercise (overcorrection) was added.
Negative punishment. Kennedy and Souza
(1995) report that providing enhanced visual
stimulation (e.g., video game) reduced rate of
eye poking slightly, but that removal of the
video game contingent on eye poking produced
661
662
Combining Antecedent
and Consequent Interventions
A number of researchers have examined combinations of antecedent and consequence interventions in treatment of self-injurious behavior.
24 Self-Injury
663
participant was followed by reductions in selfinjury to zero with increases in positive vocalizations. Oliver et al. (1998) report no other
interventions implemented in the course of
restraint reduction.
Other Interventions
Although a wide range of alternative interventions appear in the literature, only one is considered here. Given the number of intervention
studies published examining efcacy of this
intervention in treating self-injury, this intervention found to be supported by Limited Evidence.
Contingent or noncontingent use of protective
equipment. For many who engage in self-injury,
this behavior has resulted and has great potential
to result in severe injury or even death. Given
this, protection from these dire sequelae is of
paramount importance. This protection sometimes involves use of protective equipment, such
as arm splints, helmets, masks, or other devices.
Luiselli (1986) applied a football helmet with a
face guard and padded mittens contingent on
their 16-year-old participants striking his body
or head, or his head and face banging, and
maintained the differential reinforcement of other
behavior procedure that was already in place. It is
noted that numerous prior interventions were
reported to have been implemented, to include
contingent water mist and contingent exercise, to
no avail. Luiselli (1986) reports that this intervention resulted in a nearly 80 % reduction in
self-injury relative to implementation of the DRO
procedure by itself.
Oliver et al. (1998) worked with three individuals for whom arm splints were worn noncontingently to prevent self-injury, but which also
precluded fuller participation in daily life. They
report systematically increasing the degree of
arm exion permitted by the splints (from 0 %
exion to 100 % exion in 25 % increments)
resulted in zero rates of self-injury and increases
in positive vocalizations for one participant; and
that increases in exion from 25 % to 50 % to
75 % similarly decreased self-injury and produced variable increases in positive vocalizations
for a second participant. Systematically reducing
head coverage for a helmet worn by a third
664
24 Self-Injury
665
666
24 Self-Injury
is a product of faulty ego boundaries. In this argument, Carr cites evidence supporting the rst four
hypotheses and dismisses the fth.
A tremendous leap forward was made in
assessment and treatment of self-injury with publication of Toward a Functional Analysis of SelfInjury by Iwata et al. (1982). In this study, Iwata
et al. demonstrated and detailed a more standardized method for assessing extent to which
self-injury is maintained by social positive reinforcement, social negative reinforcement, or nonsocially mediated reinforcement. Their analysis
identied environmental determinants of selfinjury for six of nine participants.
Subsequent functional analysis research by
Iwata, Pace, et al. (1994) examined 152 analyses
conducted across an 11 year period. Researchers
found 26 % of instances of self-injury maintained
by social positive reinforcement, with 23 % by
attention, 2 % by socially mediated access to
materials, and 1 % by access to food. Thirtyeight percent of cases were maintained by social
negative reinforcement, with 35 % by termination of instructional demands, 1 % social interactions, 1 % physical exam termination, and 1 %
ambient noise termination. These researchers
suspected automatic or sensory reinforcement in
26 % of instances, with sensory positive reinforcement accounting for 20 %, sensory negative
reinforcement in 1 % of cases, and unclear nonsocially mediated reinforcement in 5 % of cases.
Only 5 % of cases had multiple maintaining
contingencies.
Analogue functional analysis has since become
somewhat commonplace in assessment and treatment of self-injury, and research has continued,
focusing on extent to which enriched or impoverished environments affect responding in a control
condition (Kahng & Iwata, 1998), inuence of
including features of the participants natural environments in the analysis (Shirley, Iwata, & Kahng,
1999); effects of differing session durations on
functional analysis outcome (Wallace & Iwata,
1999); examination of possible discriminative
stimulus control (Bergen et al., 2002); effects of
novel versus familiar therapists on functional analysis outcome (Huete & Kurtz, 2010); extent to
which spoken attention accompanies delivery of
667
tangibles when assessing for social positive reinforcement by contingent tangible delivery (Moore,
Mueller, Dubard, Roberts, & SterlingTurner,
2002); renement of condition procedures when
functional analysis outcome is unclear (McKerchar
et al., 2001); and identication of motivating operations (Smith et al., 1995). OReilly (1997)
described a procedure through which functional
analysis can be conducted with episodic selfinjury that occurs with long periods between
bouts. Finally, Sturmey (1994) reported on seven
functional analyses through which maintaining
variables were unable to be determined, and concluded that in such instances, it may be worth
assessing the extent to which environmental
enrichment, or provision of preferred stimuli contingent on durations in which behavior occurred
exclusive of self-injury occurred may produce
reductions in self-injury, before conducting further, prolonged analysis.
Analogue functional analysis has most often
been conducted in the context of an alternating
treatments design (e.g., Iwata et al., 1982),
although some have conducted analyses using a
pairwise comparison design (Iwata, Duncan,
et al., 1994; Iwata, Pace, et al., 1994). Some have
followed inconclusive functional analyses conducted with an alternating treatments design with
continued analysis conducted in the context of a
withdrawal design (Carr, Smith, Giacin, Whelan,
& Pancari, 2003).
Several alternatives have been posed to
analogue functional analysis conducted in the
context of one of these experimental designs. As
conducted by MacDonald et al. (2002), brief
functional analysis involved conducting only two
5 min sessions of each of four functional analysis
conditions in the context of an alternating treatments design, and were able to identify the type
of reinforcement maintaining their participants
eye-poking as nonsocially mediated reinforcement. Tincani et al. (1999) compared outcome of
brief functional analysis, consisting of a single
session of each assessment condition, versus a
traditional functional analysis conducted within
an alternating treatments design, and found that
both analyses produced the same outcomes, with
the brief assessment requiring approximately
668
24 Self-Injury
669
670
Conclusions
Self-injurious behavior is a vexing problem that
produces serious medical sequelae and limits life
options for those who exhibit it, and creates hardship for those who care for them. Initial conceptualizations of this behavior considered it to
be attributable to intrapsychic variables. More
recently, self-injury is considered an operant
behavior that is related to temporally antecedent
and consequent variables, as well as physiological and medical variables. A number of researchers have provided very elegant demonstrations of
functional relations between molecular antecedent and consequent events and self-injury (i.e.,
Bergen et al., 2002; Iwata et al., 1982; McKerchar
et al., 2001; Moore et al., 2002; Smith et al.,
1995) and others have discussed potential relationships between more molar events, such as
grieving the loss of a loved one (Harper &
Wadsworth, 1993), survival of a sexual assault
(Burke & Bedard, 1994), or other life events
(Owen et al., 2004) and self-injury.
Current assessment and intervention methods
permit identication of molar and molecular variables, and so permit interventionists to select or
develop treatments that address the factors that
evoke and maintain the self-injury. Many of these
interventions are multicomponent interventions
(Table 24.1), comprised of several different interventions, given identied functions of the selfinjury. While assessment has progressed greatly,
one area for growth appears to be incorporation of
verbal behavior assessments into functional assessment and analysis, particularly when the self-injury
is found to function as a verbal response. Many
impressive reductions in self-injury have been
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25
Rumination
Carl R. Dzyak, Brian L. Burkhalter,
and Theodore A. Hoch
Introduction
Rumination (sometimes called merycism) is the
chronic regurgitation of previously ingested food
and drink, followed by reswallowing (BryantWaugh, Markham, Kriepe, & Walsh, 2010). For
many who exhibit this behavior, rumination
occurs often after eating (Lang et al., 2011) and
can have severe medical and behavioral sequelae
(Dunn, Lockwood, Williams, & Peacock, 1997;
Gal, Hardal-Nasser, & Engel-Yeger, 2011;
Gravestock, 2000). Rumination most often affects
three documented populations: (1) typically
developing infants (Gaddini & Gaddini, 1959;
Menking, Wagnitz, Burton, Coddington, & Sotos,
1969); (2) individuals with special needs (primarily
profound intellectual disabilities) (Davis & Cuvo,
1980; Sisson, Egan, & Van Hasselt, 1988); and (3)
individuals with eating disorders (Schroedl,
Alioto, & DiLorenzo, 2013; Weakley, Petti, &
Karwisch, 1997; Williamson, Lawson, Bennett,
& Hinz, 1989).
Etiology may differ across populations. In typically developing infants, rumination has been
called a neurosis (Allen, 1944), and has been
attributed to inadequate maternal stimulation
(Gaddini & Gaddini, 1959; Hopper & Pineau,
1957; Lang & Melamed, 1969; Menking et al.,
1969) or other inadequate stimulation in the immediate environment (Richmond & Eddy, 1957).
Infant rumination typically occurs after 3 months
of development (Anderson & Lock, 1997). In people with intellectual disabilities, rumination may
evolve over time, with etiology of initial instances
of rumination unknown and unreported (Starin &
Fuqua, 1987). Initial instances sometimes occur in
the context of a medical difculty such as hiatal
hernia (Canilleri & Malagelada, 1984). Some have
reported that rumination is most likely to occur
when the person engaging in the behavior has
recently eaten or drunk (Vollmer & Roane, 1998).
Functional analyses of rumination with this population indicate that the behavior is often maintained nonsocially mediated reinforcement
(Kliebert & Tiger, 2011; Lyons, Rue, Luiselli, &
DiGennaro, 2007; Matson et al., 2005; Sharp,
Phillips, & Mudford, 2012; Wilder, Register,
Register, Bajagic, & Neidert, 2009; Wrigley,
Kahn, Winder, Vollmer, & Sy, 2010), by contingent
removal of task demands (Lockwood, Maenpaa,
& Williams, 1997); or by contingent social positive reinforcement (Matson et al., 2005).
In individuals with eating disorders, rumination
may be a collaterally developed behavior that
677
678
History
An article published in Science in 1889 summarized accounts of rumination in humans that
appeared in the medical literature up until that
date. The author reported that rumination was
rst identied and documented in 1618 by Italian
anatomist Fabricious ab Aquapendente. The
author went on to describe rumination occurring
in three more contemporary patients. Rumination
exhibited by a 27-year-old woman was described
as beginning between 5 and 30 min after a meal,
and involving her bringing up and chewing previously ingested food before swallowing it again,
and continuing this behavior for up to 2 h, with
no signs of distress. A 60-year-old gentlemans
rumination was similarly described, as was that
of a 35-year-old woman, who was described as
coming from a highly neurotic family. The
author then described rumination in six patients
with intellectual disabilities and three with
dementia. In each of these cases, rumination
commenced after eating, consisted of chewing
and reswallowing previously ingested food,
continued for up to 2 h after eating, and caused
no distress for those engaging in this behavior
(Anonymous, 1889, p. 418).
More contemporary descriptions of rumination,
regardless of population in which the behavior
occurs, are similar to the one just described (see
Table 25.1). Topographies exhibited by infants
have included stimulating the oral tract with
ngers or hands, extension of the head or neck,
bringing up previously swallowed stomach
contents, sucking movements of the mouth, and
After eating
1015 min after
each meal
Not reported
13-year-old boy
(severe ID)
18-year-old man
(profound ID)
6 months girl
6 months girl
(cleft lip and palate)
Galbraith
et al. (1970)
Smeets
(1970)
Libet et al.
(1973)
Sajwaj et al.
(1974)
Immediately after
feeding
Almost
immediately after
completing meal
Immediately after
feeding
Immediately after
onset of
gastrostomy tube
feedings
During meal;
shortly after meal
23-year-old woman
(severe ID)
14-year-old boy
(profound ID)
6-year-old boy
(severe ID)
9 months boy
White and
Taylor (1967)
Luckey et al.
(1968)
Lang and
Melamed
(1969)
Menking
et al. (1969)
Topography
Placing one or more ngers in mouth (2
Ss); bringing up previously swallowed food
(6 Ss); rotating and sucking movements of
the tongue (2 Ss); reswallowing some or all
of previously swallowed food (6 Ss)
Facial, throat, or eye movements followed
by vomiting and rumination
Onset
Within 12 h after
eating
Participant
6 mothers (2335 years
old), 6 infants (3 months,
15 days8 months,
14 days)
Authors
Gaddini and
Gaddini
(1959)
2040 min
Not reported
Not reported
Not reported
Not reported
Not reported
Not reported
Not reported
Percentage intervals
with rumination
Weight, count of
vomiting
Percentage intervals
with vomiting and
with rumination
Duration of
vomiting; weight
Not reported
Duration of vomiting
Count of ruminations
Rate of ruminations
AB
AB
AB
AB
(continued)
Not reported
AB
Not reported
Not reported
Design
Not reported
Table 25.1 Participants, onset and duration of rumination, topographical descriptions, behavioral measures, and experimental designs
Measures
Count of ruminations
Rumination
Duration
Not reported
25
679
Onset
After feeding,
once placed in crib
Following meals
Following meals
Not reported
Throughout
waking hours
(when not walking)
Immediately
after meals
Throughout
waking hours,
more frequently
after meals
After feeding
Participant
7.5 months boy
25-year-old man
22-year-old woman
(profound ID)
26 months girl
16-year-old boy
(profound ID)
26-year-old man
(profound ID)
10-year-old boy
(profound ID)
23-year-old and
19-year-old men
(profound ID)
Authors
Toister et al.
(1975)
Foxx et al.
(1979)
ONeil et al.
(1979)
Marholin
et al. (1980)
Davis et al.
(1980)
Daniel
(1982)
Conrin et al.
(1982)
Singh et al.
(1982)
Mestre et al.
(1983)
Topography
Assume sitting or crawling position, rock
back and forth, thrust thumb into mouth,
vomit, ruminate
Sucking motion, cheeks moving inward,
Adams apple moving up and down;
opening mouth, sticking out tongue,
belching, cheeks lling with vomitus,
mouth closing and catching vomitus
Stomach muscle contractions, tongue
thrusting, placement of hands or one or
more ngers in mouth, ejection of vomitus
from mouth
Placing thumb of right hand in mouth,
thrusting tongue toward posterior oral
cavity, followed by vomiting and
rumination
Not reported
Not reported
Not reported
2h
Not reported
Not reported
3060 min
1h
30 min
Duration
Not reported
Count of vomiting by
day; weight
Percentage intervals
with rumination
Rate of rumination
Count of ruminations
Weight
Percentage intervals
with rumination
Percentage intervals
with rumination
Measures
Rate of rumination;
weight
Multiple
baseline
design across
participants
and meals
Treatment
only
ABAB
Multiple
baseline
across meals
AB
Multiple
treatment
withdrawal
design
Treatment
only
Multiple
baseline
across
participants
Design
AB
680
C.R. Dzyak et al.
Not reported
Immediately after
each meal
Throughout
waking hours
Not reported
Approximately
every other day,
following binging
in the evening
10-year-old girl
(profound ID)
17-year-old boy
(profound ID)
24-year-old woman
(bulimia nervosa)
McKeegan
et al. (1987)
Sisson et al.
(1988)
Yang (1988)
Williamson
et al. (1989)
30 min after
breakfast
Not reported
Following all
meals
Not reported
Not reported
Glasscock
et al. (1986)
Lobato et al.
(1986)
Rast,
Johnston, and
Drum (1984)
Rast et al.
(1985)
Beukelman
and Rogers
(1984)
A few
minutes to
more than
20 min
Not reported
Continuous
20 min
Not reported
Not reported
3060 min
Not reported
Not reported
Self-reported count
of nights without
eating
Count of
ruminations; weight
Percentage intervals
with rumination
Mean count of
rumination per
interval
Rate of rumination
Percentage intervals
with rumination and
with self-stimulatory
behavior
Rate of rumination
Rate of rumination
Rate of rumination
Multiple
treatment
withdrawal
design
Multiple
baseline
design across
time of day
Multiple
treatment
withdrawal
design
Multiple
treatment
withdrawal
design
(continued)
Withdrawal
design in
context of
multiple
baseline
design across
participants
ABAB
ABCA
ABCDEFGA
ABC
25
Rumination
681
Not reported
Not reported
Not reported
Not reported
Not reported
Following meals
Following requests
from staff
Following meals
Not reported
Throughout the
day; most often
after meals
34-year-old woman
(severe ID)
46-year-old man
(profound ID)
Lockwood
et al. (1997)
Weakley
et al. (1997)
Wilder et al.
(1997)
Thibadeau
et al. (1999)
Dunn et al.
(1997)
Not reported
Within 20 min of
completing meal
Greene et al.
(1991)
Fullerton
et al. (1992)
Franco et al.
(1993)
Tamburrino
et al. (1995)
Topography
Bringing up food into the mouth; chewing
when nothing had been eaten, the
appearance of food in the mouth or coming
out of the mouth, observable movements of
the mouth, tongue, and/or throat
Bringing previously ingested food into
mouth and reswallowing
Onset
Following every
meal
Participant
22, 33, and 40-year-old
men
(profound ID)
Authors
Clauser and
Scibak
(1990)
Not reported
Not reported
3060 min
Not reported
20 min
Not reported
Not reported
Not reported
Not reported
Duration
12 h
Count of ruminations
Self-reported count
of rumination;
weight
Percentage intervals
with rumination
Mean count of
vomiting incidents
per day; weight
Percentage intervals
with rumination;
weight
Count of ruminations
per feeding
Not reported
Not reported
Count of ruminations
Measures
Rate of rumination
Alternating
treatments
design within
ABAB design
ABAB
Not reported
ABC
AB
Not reported
Not reported
Not reported
AB
Design
Multiple
treatment
withdrawal
design
682
C.R. Dzyak et al.
Following
ingestion of
liquids (with
neither bread nor
peanut butter) or
yogurt and liquids
Not reported
After meals
Continuous; most
often within
3060 min of
meals
After meals
Throughout the
day
Given lesser social
attention or
instructions
59-year-old man
(profound ID)
11 and 14-year-old
boys (ID)
37-year-old man
(autism, profound ID)
6-year-old boy
(autism)
Adult woman
(severe ID)
SandersDewey and
Larson
(2006)
Kenzer and
Wallace
(2007)
Lyons et al.
(2007)
Wilder et al.
(2009)
Rhine and
Tarbox
(2009)
Wrigley et al.
(2010)
20-year-old man
(severe ID)
After meals
Dudley et al.
(2002)
Heering et al.
(2003)
Not reported
Not reported
Not reported
Not reported
Not reported
Not reported
60 min
Not reported
Rate of rumination
Rate of rumination
Rate of rumination
Percentage intervals
with rumination
Rate of rumination
Count of ruminations
Percentage intervals
with rumination
Rate of rumination
Alternating
treatments
design
Alternating
treatments
design and
ABAB
Alternating
treatments
design and
multiple
treatment
withdrawal
design
Alternating
treatments
design
Alternating
Treatments
design and
ABABA
design
(continued)
ABCD
Alternating
treatments
design and
ABAB
ABAB
25
Rumination
683
Not reported
Sharp et al.
(2012)
Woods et al.
(2013)
After lunch
Kliebert and
Tiger (2011)
Immediately
following meals
Following meals
Not reported
Carroll et al.
(2011)
Schroedl
et al. (2013)
Onset
During lesser
social attention or
when instructions
were given
Participant
Adult woman
(severe ID)
Authors
Wrigley et al.
(2010)
Topography
Vertical movement of the throat, pursing of
lips, retaining product of rumination until
both cheeks were fully extended
Not reported
Not reported
Not reported
Not reported
Not reported
Duration
Not reported
Rate of rumination
and percentage
intervals with
rumination
Physiological
monitoring;
self-reports; weight
Percentage intervals
with rumination
Rate of rumination
Duration of
rumination
(percentage of
session)
Measures
Rate of rumination
Alternating
treatments
design and
ABCD
Alternating
Treatments
Design
within AB
Alternating
treatments
design and
AB
Not reported
Design
Alternating
treatments
design and
ABABA
design
ABABA
684
C.R. Dzyak et al.
25
Rumination
685
Denition
The Diagnostic and Statistical Manual (fth edition) describes rumination as an eating disorder
characterized by regurgitation of previously consumed food, that is not used as a means of controlling weight, and which is not driven by
negative feelings about oneself, but which
involves using the musculature of ones gastroesophageal tract to propel stomach contents back
into ones mouth, where they may be rechewed,
reswallowed, or expelled (American Psychiatric
Association, 2013). Some researchers have opted
to list topographies (e.g., Foxx et al., 1979), or
chains of topographies (Conrin et al., 1982),
while others have dened behaviors that were
precurrent to rumination (see Sajwaj et al., 1974)
(Table 25.1). The majority of rumination denitions included reswallowing of the vomitus;
however, some studies allowed for the vomitus to
exit the mouth and may fall into the category of
functional vomiting rather than rumination. A
number of studies do not include operational definitions of rumination (Beukelman & Rogers,
1984; Davis et al., 1980; Franco et al., 1993;
Fullerton, Neff, & Getto, 1992; Luckey, Watson,
& Musick, 1968; Schroedl et al., 2013; Tamburrino
et al., 1995).
Rumination is sometimes described as occurring throughout all waking hours (Humphrey,
Mayes, & Bixler, 1989), or beginning immediately, or after 3060 min after a meal (Lyons
686
25
687
Rumination
Table 25.2 Degree to which Evidence Standards and criteria met, by study
Authors
Gaddini and Gaddini
(1959)
White and Taylor
(1967)
Luckey et al. (1968)
Lang and Melamed
(1969)
Menking et al. (1969)
Galbraith et al.
(1970)
Smeets (1970)
Libet et al. (1973)
Sajwaj et al. (1974)
Degree to which
Evidence Standards are
met
Does Not Meet
Evidence Standards
Does Not Meet
Evidence Standards
Does Not Meet
Evidence Standards
Does Not Meet
Evidence Standards
Does Not Meet
Evidence Standards
Does Not Meet
Evidence Standards
Does Not Meet
Evidence Standards
Does Not Meet
Evidence Standards
Meets Evidence
Standards with
Reservation
Does Not Meet
Evidence Standards
Does Not Meet
Evidence Standards
Meets Evidence
Standards with
Reservation
Does Not Meet
Evidence Standards
Does Not Meet
Evidence Standards
Does Not Meet
Evidence Standards
Experimenter
controlled IV
Yes
IOA reliability
No
Demonstrates
functional control
No
Yes
No
No
Yes
No
No
Yes
No
No
No
No
No
Yes
No
No
Yes
No
No
Yes
No
Yes
Yes
<20 % of data
Yes
Yes
No
No
Yes
<20 % of data
Yes
Yes
<20 % of data
Yes
Yes
No
No
Yes
No
No
Yes
No
No
(continued)
688
Table 25.2 (continued)
Authors
Conrin et al. (1982)
McKeegan et al.
(1987)
Sisson et al. (1988)
Yang (1988)
Williamson et al.
(1989)
Clauser and Scibak
(1990)
Greene et al. (1991)
Fullerton et al. (1992)
Franco et al. (1993)
Tamburrino et al.
(1995)
Dunn et al. (1997)
Lockwood et al.
(1997)
Weakley et al. (1997)
Wilder et al. (1997)
Thibadeau et al.
(1999)
Degree to which
Evidence Standards are
met
Meets Evidence
Standards with
Reservation
Meets Evidence
Standards
Does Not Meet
Evidence Standards
Does Not Meet
Evidence Standards
Does Not Meet
Evidence Standards
Does Not Meet
Evidence Standards
Meets Evidence
Standards
Meets Evidence
Standards with
Reservation
Meets Evidence
Standards
Meets Evidence
Standards with
Reservation
Does Not Meet
Evidence Standards
Does Not Meet
Evidence Standards
Meets Evidence
Standards with
Reservation
Does Not Meet
Evidence Standards
Does Not Meet
Evidence Standards
Does Not Meet
Evidence
Does Not Meet
Evidence Standards
Does Not Meet
Evidence Standards
Does Not Meet
Evidence Standards
Does Not Meet
Evidence Standards
Meets Evidence
Standards
Does Not Meet
Evidence Standards
Experimenter
controlled IV
Yes
IOA reliability
<20 % of data
Demonstrates
functional control
Yes
Yes
Yes
Yes
Yes
No
No
Yes
No
No
Yes
Yes
No
Yes
Yes
No
Yes
Yes
Yes
Yes
<20 % of data
Yes
Yes
Yes
Yes
Yes
<20 % of data
Yes
Yes
Yes
No
No
No
No
Yes
<20 % of data
Yes
<20 % of data
No
No
No
No
No
No
No
No
No
No
Yes
<20 % of data
No
Yes
No
No
No
No
No
Yes
Yes
Yes
Yes
<20 % of data
No
(continued)
25
Rumination
689
Authors
Dudley et al. (2002)
Heering et al. (2003)
Sanders-Dewey and
Larson (2006)
Kenzer and Wallace
(2007)
Lyons et al. (2007)
Wilder et al. (2009)
Rhine and Tarbox
(2009)
Wrigley et al. (2010)
Degree to which
Evidence Standards are
met
Meets Evidence
Standards
Meets Evidence
Standards
Does Not Meet
Evidence Standards
Meets Evidence
Standards
Meets Evidence
Standards
Meets Evidence
Standards
Meets Evidence
Standards
Meets Evidence
Standards with
Reservation
Meets Evidence
Standards
Meets Evidence
Standards
Meets Evidence
Standards with
Reservation
Does Not Meet
Evidence Standards
Meets Evidence
Standards
Experimenter
controlled IV
Yes
IOA reliability
Yes
Demonstrates
functional control
Yes
Yes
Yes
Yes
Yes
<20 % of data
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
<20 % of data
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
<20 % of data
Yes
No
No
No
Yes
Yes
Yes
2. Interobserver agreement data (or other reliability data) are gathered for at least 20 % of
data points within each session of the
experiment.
3. The experimental design used permits
demonstration of functional control by the
independent variable of the dependent variable, through demonstration of prediction,
verication, and replication for all participants
(Cooper, Heron, & Heward, 2007).
Studies meeting all three of these criteria
were found to Meet Evidence Standards. Studies
meeting the rst two criteria, but failing to meet
the third criterion for at least one participant,
were found to Meet Evidence Standards with
Reservations. We deviated from these procedures
by nding a study to Meet Evidence Standards
with Reservations if both criteria 1 and 3
were met, and interobserver agreement or other
690
Antecedent Interventions
Antecedent-based interventions for rumination
involve managing events hypothesized to be
related to rumination, before the rumination
occurs. Such interventions can include providing
noncontingent or scheduled access to additional
food or drink, either outside of, or before or after
meals (Rast et al., 1984), presenting noncontingent access to other oral stimulation materials
(e.g., chewing gum, avor spray, or chew toys)
(Carroll et al., 2011; Weakley et al., 1997; Wilder
et al., 2009), or altering the pace (McKeegan
et al., 1987) or composition of food presented at
meals (Rast et al., 1985).
As time progressed, focus of treatment shifted
from aversive, consequence-based interventions to
less aversive, antecedent-based interventions
(Jackson & Tierney, 1984). Prior to Foxx et al.
(1979), consequence based punishment procedures (Galbraith et al., 1970; Luckey et al., 1968;
White & Taylor, 1967) and loosely dened
nurturing procedures (Gaddini & Gaddini, 1959;
Menking et al., 1969) had been reported to address
rumination. Foxx et al. implemented an antecedent-based intervention (satiation) and added a consequence component (contingent oral hygiene) to
further reduce rumination. Rast et al. (1984) used
only an antecedent-based procedure by varying
food quantity participants received at mealtime.
One of the 12 studies reviewed that was
published in the 1970s used antecedent procedures
(Foxx et al., 1979) (Table 25.4). An increasing
25
Rumination
691
Procedure
Contingent aversive
taste (punishment)
Differential
reinforcement of other
behavior
Noncontingent
presentation of alum
Altered rate of food
presentation + DRI
Liquid rescheduling
Noncontingent access to
nonnutritive reinforcer
Resetting
DRO + Response
interruption + Alternating
task schedule
Authors
Sajwaj et al.
(1974)
Glasscock et al.
(1986)
Sisson et al.
(1988)
Foxx et al. (1979)
Singh et al.
(1982)
Foxx et al. (1979)
Lobato, Carlson,
and Barrera
(1986)
Clauser and
Scibak (1990)
Greene et al.
(1991)
Wilder et al.
(1997)
Masalsky and
Luiselli (1998)
Thibadeau et al.
(1999)
Dudley et al.
(2002)
Kenzer and
Wallace (2007)
Lyons et al.
(2007)
Kliebert and
Tiger (2011)
Woods et al.
(2013)
ONeil et al.
(1979)
Conrin et al.
(1982)
Beukelman and
Rogers (1984)
McKeegan et al.
(1987)
Heering et al.
(2003)
Sharp et al.
(2012)
Wilder et al.
(2009)
Rhine and Tarbox
(2009)
Carroll et al.
(2011)
Wrigley et al.
(2010)
Degree of
evidence
Limited
evidence
Number of
studies
3
Number of
independent
research teams
3
Total number of
participants
3
Limited
evidence
Strong
evidence
12
12
21
Limited
evidence
Limited
evidence
Limited
evidence
Limited
evidence
Limited
evidence
Limited
evidence
692
Table 25.4 Assessment and intervention type, by study
Authors
Gaddini and
Gaddini (1959)
White and Taylor
(1967)
Luckey et al.
(1968)
Lang and
Melamed (1969)
Menking et al.
(1969)
Galbraith et al.
(1970)
Smeets (1970)
Libet et al. (1973)
Sajwaj et al.
(1974)
Toister et al.
(1975)
Foxx et al. (1979)
Pre-intervention
assessment
Direct observation
and family interview
Not reported
Antecedent based
intervention
Other
Consequence based intervention intervention
Nurturing
Contingent electric shock
Not reported
Not reported
Family interview
Nurturing
Not reported
Baseline observation
Systematic
observation of
topography
Baseline observation
Contingent presentation of
lemon juice
Contingent electric shock
Not reported
Baseline observation
ONeil et al.
(1979)
Baseline observation
Marholin et al.
(1980)
Davis et al. (1980)
Not reported
Daniel (1982)
Conrin et al.
(1982)
Singh et al. (1982)
Mestre et al.
(1983)
Beukelman and
Rogers (1984)
Baseline observation
Baseline observation
Baseline observation
Not reported
Baseline observation
Baseline data
collection
Glasscock et al.
(1986)
McKeegan et al.
(1987)
Sisson et al.
(1988)
Baseline observation
Satiation (double
portions of meals)
Contingent presentation of
lemon juice + Differential
reinforcement of other
behavior
Contingent presentation of
lemon juice
Contingent verbal
reprimand + Contingent
removal of music
Contingent exercise
Differential reinforcement of
other behavior
Contingent oral hygiene
Contingent presentation of
Tabasco sauce + Vinegar
contingent presentation of
alum; Noncontingent
presentation of alum
Baseline observation
Not reported
Baseline observation
Baseline observation
Systematic variation
in food quantity
Systematic variation
in food quantity and
composition
Contingent presentation of
lemon juice or Lime Juice
Differential reinforcement of
other behavior
Contingent presentation of
lemon juice
(continued)
25
693
Rumination
Williamson et al.
(1989)
Clauser and
Scibak (1990)
Pre-intervention
assessment
Baseline observation
Greene et al.
(1991)
Staff interview
Fullerton et al.
(1992)
Franco et al.
(1993)
Tamburrino et al.
(1995)
Dunn et al. (1997)
Psychiatric
evaluation
Medical and nursing
evaluation; family
observation
Psychiatric
evaluation
Baseline observation
Lockwood et al.
(1997)
Descriptive
functional analysis
Weakley et al.
(1997)
Wilder et al.
(1997)
Psychiatric
evaluation
Baseline observation
Thibadeau et al.
(1999)
Baseline observation
Dudley et al.
(2002)
Heering et al.
(2003)
Sanders-Dewey
and Larson (2006)
Baseline data
collection
Experimental
functional analysis
Baseline observation
Kenzer and
Wallace (2007)
Lyons et al. (2007)
Experimental
functional analysis
Experimental
functional analysis
Antecedent based
intervention
Noncontingent access
to white bread
following meals
Other
Consequence based intervention intervention
Group
therapy
Triple portions of
food + Unlimited
access to cold cereal
with milk at each
meal
Variation in caloric
value of food through
presentation of peanut
butter or less caloric
dense food
Millieu
therapy
Nurturing
Millieu
therapy
Increased food
quantity
Differential reinforcement of
other
behavior + Restitution + Escape
extinction + Choice making
Noncontingent access
to chewing gum
FT 20s delivery of
gelatin or pudding
and liquid
rescheduling assessed
in alternating
treatments design
Addition of quantities
of white bread to
meals
Satiation
Differential reinforcement of
other behavior + Contingent
toothbrushing
Liquid rescheduling
Contingent presentation of
aversive taste + Contingent
presentation of pleasant taste
and verbal praise
Satiation
Noncontingent food
or liquid presentation
(continued)
694
Table 25.4 (continued)
Authors
Wilder et al.
(2009)
Pre-intervention
assessment
Experimental
functional analysis
Caregiver interview
Carroll et al.
(2011)
Kliebert and Tiger
(2011)
Baseline observation
Experimental
functional analysis
Psychological
evaluation
Experimental
functional analysis
Schroedl et al.
(2013)
Woods et al.
(2013)
Experimental
functional analysis
Experimental
functional analysis
Antecedent based
intervention
Experimenter and
participant
administered avor
spray
Noncontingent access
to chewing gum
Systematic alternation
of walking and
sedentary activity
Other
Consequence based intervention intervention
Response
interruption + Differential
reinforcement of other
behavior
Noncontingent access
to chew toy
Noncontingent
presentation of juice
post-meal
Liquid rescheduling
Selfregulation
Pre-meal and
continuous food
access
number of studies reported antecedent-based interventions in the 1980s and 1990s (e.g., Clauser &
Scibak 1990; Weakley et al., 1997; Wilder et al.,
1997; Yang, 1988). These studies reported either
use of antecedent based procedures alone (Clauser
& Scibak, 1990; Dunn et al., 1997; Greene et al.,
1991; Lobato et al., 1986; Rast et al., 1984, 1985;
Wilder et al., 1997; Yang, 1988), or in combination with consequence- based procedures
(McKeegan et al., 1987; Thibadeau et al., 1999).
This transition toward antecedent-based procedures continued into the 2000s (e.g., Heering
et al., 2003; Lyons et al., 2007; Wilder et al., 2009).
Strong evidence. Although a good number of
studies documenting the treatment of rumination
have been published over the last half-century,
only one antecedent procedure (satiation) has
been replicated sufciently to be determined
strongly evidence-based on the standards of
Kratchowill et al. (2010): (1) at least ve studies;
(2) conducted by at least three independent
research teams; and (3) with 20 or more total
participants. Satiation-inducing procedures, such
as pre-meal or post-meal noncontingent access
to food or liquids, increased portion sizes, and
25
Rumination
695
The results maintained across 3 monthly posttreatment follow-up sessions. Benets reported
with using chewing gum as an antecedent treatment were low cost, low effort, non-aversive
procedures, and low caloric ingestion.
Carroll et al. (2011) assessed noncontingent
use of a chew toy as an antecedent strategy in an
attempt to provide a calorie-free replacement
for satiation. Using a withdrawal design, the
experimenters found therapeutically valuable
decreases during the noncontingent chew toy
condition, when compared to the baseline
conditions. The experimenters found that the rate
of rumination decreased as oral engagement with
the chew toy increased, and the effects were
sustained over eight months follow-up.
Liquid rescheduling. Heering et al. (2003)
examined effects of altering amount of liquids
consumed by a 19-year-old man diagnosed with
autism and profound intellectual disability.
Experimenters conducted a pre-intervention,
multi-element assessment, and found that
withholding liquid during meals decreased
rumination to a rate of zero during the hour
following mealtime. Experimenters then examined effects of withholding liquids for 1.5 h after
meals, and reported substantial decreases
(near-zero levels) in rumination behavior after
introducing the liquid rescheduling procedure.
Sharp et al. (2012) compared the effects of four
different interventions on the rumination behavior
of a 31-year-old man and a 41-year-old woman,
both diagnosed with autism and severe intellectual
disabilities. The four interventions were examined
in an alternating treatments design, and were:
Liquid rescheduling, supplemental post-meal food,
supplemental post-meal peanut butter, and increased
meal size.. Liquid rescheduling was the only effective method of decreasing rumination for both participants and decreased rumination to sub-baseline
levels across all follow-up sessions.
Consequence Interventions
We see across the 1960s through the 1980s a
movement away from more harshly appearing
consequence-based decelerative procedures to
use of less intrusive consequences. Studies
696
25
Rumination
697
respectively, during lunchtime baseline observations. They rst implemented a satiation procedure at lunch, and rate of percentage intervals
with rumination dropped to 48.8 % and 7.9 %,
respectively. Given inadequacy of these reductions, Foxx et al. added an oral hygiene procedure, which consisted of delivery of a verbal
reprimand plus 2 min of swabbing the participants mouth with an oral antiseptic contingent
on rumination. Levels of rumination dropped to
3 % of intervals and 1.4 % of intervals for the two
participants, respectively. Foxx et al. noted that
despite implementing the satiation and satiation
plus oral hygiene procedures only at lunch, their
observations at breakfast and dinner indicated
similar reductions in rumination at those meals,
as well, coinciding with introduction of treatments across the participants. Foxx et al. opined
that the oral hygiene procedure had the added
benet (over contingent presentation of other
aversive tastes) of cleansing the ruminating participants mouth and breath, thereby reducing
the odor associated with the behavior (p. 401).
Singh et al. (1982) examined effects of punishment by contingent oral hygiene on rumination of two adolescent monozygous twins, using
a multiple baseline design across participants and
meals. Using 10 s partial interval sampling for
60 min after each meal, baseline data were collected and interventions implemented for one
brother rst and then the other, for lunch rst,
then for breakfast, and then for dinner.
Researchers also collected data on stereotyped
behavior (e.g., rocking, waving, rubbing parts of
the body, rotating items, and tapping objects/
toys), self-injury, and appropriate behavior (e.g.,
smiling, appropriate speech or laughter, toy play,
and interaction with others) during these intervals. They found an inverse relationship between
rumination and stereotypy, with rumination
decreasing to near zero following introduction of
the oral hygiene procedure across participants
and across meals, as stereotypy increased simultaneously, approaching 100 % of intervals. Selfinjury remained at near zero levels across
conditions, and no change was observed in
appropriate behaviors. Singh et al. (1982) opined
that oral hygiene had benecial side effects, such
698
as improving teeth, gums, and breath, and preventing tooth decay. They concluded, though,
that given collateral increase in stereotypy and
irrelevance of this procedure to appropriate
behaviors, additional procedures would be necessary to bring about constructive behavioral
improvements.
Differential reinforcement of other behavior.
Citing concerns for ethical and legal aspects of
punishment-based procedures involving faradic or
other aversive stimuli, Conrin et al. (1982) examined effects of DRO on rumination exhibited by
two men with profound intellectual disabilities.
Recording duration of rumination movements for
30 min after meals for one participant and 60 min
after meals for the other, Conrin et al. reported
rumination occurring for between 5 and 30 min
duration after meals for one participant, and
30 min duration for the other. Intervention began
as contingent delivery of a small bit of food to the
participants mouth when the interresponse time
(IRT) since the last instance of rumination reached
15 s. That is, at 15 s following the end of the last
instance of rumination, if no new instance of
rumination had begun, a small morsel of food was
delivered to the participants mouth. Rumination
durations quickly approached zero for both participants. Stretching the IRT to 30 s and then 60 s
resulted in continued zero durations for rumination for one participant. Stretched IRTs of 1, 2, 5,
and 10 min were each met with increased variability in durations of rumination, but overall
greatly reduced durations (02 min) for the other
participant. Withdrawal of the intervention and
return to baseline procedures resulted in increased
durations of rumination for both. Reinstituting
DRO with an IRT at 30 s returned rumination
duration to near zero seconds for the rst participant, and reinstituting DRO with IRTs at 2, 5, and
then 10 min resulted in return to near zero durations of rumination for the other. These authors
hypothesized that the gustatory stimulation produced by rumination reinforced this behavior, and
that by providing alternative access to gustatory
stimuli contingent on behaviors incompatible
with rumination for gradually increasing durations, they were able to reduce rumination for
both participants.
25
Rumination
699
700
Combining Antecedent
and Consequent Interventions
Like any other behavior, rumination occurs in
temporal relation to events occurring that may be
functionally related to it. When this is the case, it
is essential to address both antecedent and consequent events in treatment of the rumination. Early
reports of treatment focused mainly on consequent events, not insofar as they contributed to
maintenance of rumination prior to treatment, but
rather as stimuli to be delivered contingent on
rumination to decrease its frequency. In the midand late-1970s, antecedent-based procedures
began to appear in the literature. Coinciding with
this, combinations of antecedent-based and
consequence-based procedures were published.
This trend continued following advent of preintervention functional analysis and functional
assessment for rumination.
Strong evidence. Both Foxx et al. (1979) and
Thibadeau et al. (1999) reported combinations of
satiation with contingent oral hygiene. Using a
multiple baseline design across participants,
Foxx et al. found that the satiation procedure
alone produced a moderate decrease in rumination for one participant, and a more substantial
decrease for the other, but that addition of the
contingent oral hygiene procedure further
reduced frequency of rumination to near zero for
25
Rumination
701
702
she completed dinner without ruminative vomiting. Experimenters report rumination decreased
to near zero within 8 months, weight increased to
her target range, and these improvements maintained over the next 16 months. This multicomponent treatment included both antecedent (e.g.,
selecting own food, selecting own schedule,
selecting own task materials) and consequent
(e.g., differential reinforcement, reinforcement,
and extinction) components. These authors
employed an A-B-C design, and so functional
control between the interventions and the ruminative vomiting was not demonstrated.
Other Interventions
Beginning in the 1960s with the research by
White and Taylor (1967) and others,
conceptualizations of rumination exhibited by
people with intellectual disabilities have generally come from a behavior analytic orientation
and have considered the behavior to be learned
and maintained by contingencies of reinforcement. Interventions derived from this formulation have involved management of contingencies
surrounding the rumination.
Before this, and continuing to more recent
times, conceptualization of rumination exhibited
by infants and by typically developing adolescents and adults with eating disorders (e.g.,
anorexia nervosa or bulimia nervosa) tend to be
more psychodynamic, family systems, or generally psychological in nature. Interventions
derived from these formulations are described
next.
Nurturing therapy. In their work with infants
who were failing to thrive, Gaddini and Gaddini
(1959) conducted direct observations of infants
eating and ruminating, and family interviews
regarding the course of pregnancy, infants development, and family dynamics. They hypothesized that immature and inadequate (p. 176)
personalities possessed by mothers resulted in
the infants developing somatic symptoms, which
included the rumination. The solution to this was
for a nurse to provide surrogate mothering, or
nurturing, or for the infants own mother to
25
Rumination
most often occurs in the context of anorexia nervosa or bulimia nervosa (Khan et al., 2002).
Given this, treatment for this behavior takes place
in the context of treatment of the overarching eating disorder. Fullerton et al. (1992), Tamburrino
et al. (1995), and Khan et al. (2002) reported that
various combinations of inpatient psychiatric
milieu therapy, monitored meals, locked bathrooms, frequent monitoring by another person,
and individual, group, and family therapy produce alleviation of rumination.
703
tions such as motility disturbances, gastroesophageal reux, and swallowing dysfunction may
contribute to this behavior (Babbitt et al., 1994).
It is logical that prior to, or concurrent with
assessment of environmental events that may or
may not be related to rumination, medical and
other professionals who are expert in assessment
of swallowing and other behavior of the gastrointestinal tract conduct their assessments, which
can result in either ruling out these contributing
factors, or treating them through other appropriate means. Indeed, a number of authors have
called for an approach to assessing rumination
that crosses medical and behavioral disciplines
(Babbitt et al., 1994; Fredericks et al., 1998).
Of course, a cross-disciplinary evaluation of
rumination is most likely to occur when rumination has already been determined to be problematic. By this time, medical and social sequelae
may already be taking their toll (Matson & Kuhn,
2001). Two instruments have been developed that
can serve as pre-assessment screens to determine
whether rumination is or may become a problem
before its problematic nature has become obvious. The Screening Tool of Feeding Problems
(STEP), developed by Matson and Kuhn (2001),
is a 23-item informant based assessment through
which a qualied individual elicits responses
from an informant regarding frequency and
severity of various eating related behavioral difculties. Informants respond to each item by
indicating that the nominated behavior has not
occurred in the last month (rated zero), occurred
between one and ten times (rated a one), or
occurred more than ten times in the last month
(rated a two). For items with frequency ratings of
one or two, the informant then indicates whether
the behavior is not a problem (rated a zero), is a
mild problem (rated a one), or a severe problem
(rated a two). This instrument contains two items
pertaining to rumination and vomiting, and
examination of psychometric properties of this
instrument, and of these items in particular, indicates good internal, temporal, and inter-rater consistency, and has good predictive validity. A
parallel form of this instrument, the Screening
Tool of Feeding Problems Applied to Children
(STEP-CHILD) (Seiverling, Hendy, & Williams,
704
25
Rumination
705
706
either logical extension of interventions rst published for other problems to treatment of rumination, or treatment selection based on fortuitous
experimenter observations. Punishment was the
primary mode of treatment, but the exact stimulus used as the punisher varied over time. White
and Taylor (1967) conceptualized rumination as
an operant behavior, and employed contingent
electric shock, citing advantage this treatment
had over nurturing treatments with regard to
rapidity of alleviation of rumination. A number of
researchers subsequently elected this intervention for their participants, each citing the success
reported by White and Taylor (e.g., Galbraith
et al., 1970; Lang & Melamed, 1969; Luckey
et al., 1968; Toister et al., 1975).
Concern with acceptability of contingent electric shock contributed to selection of punishment
by contingent oral administration of lemon juice
by Libet et al. (1973) and Sajwaj et al. (1974).
Citing effectiveness of the contingent lemon
juice procedure, but concerned with the perceived aversive nature of contingent aversive
tastes, Foxx et al. (1979) opted to conduct a satiation procedure combined with contingent oral
hygiene. The latter component still included presentation of a stimulus some might consider
unappealing, but had in its favor the normative
nature of this stimulus being used to counteract
breath odor, and potential oral health benets of
its use. Singh et al. (1982) replicated the oral
hygiene component, and found it efcacious in
reducing rumination.
Citing concern with the perceived acceptability of contingent electric shock, Smeets (1970)
applied contingent removal of social stimuli to
rumination of his adult participant, citing prior
use by Wolf, Birnbauer, Williams, and Lawler
(1965) in implementing this procedure to reduce
vomiting. Similarly, Davis et al. (1980) reported
contingent use of music as effective in treating
other behavioral difculties, and as less aversive
than either aversive tastes or contingent electric
shock, and so applied contingent termination of
ambient music combined with a verbal reprimand in their treatment for rumination.
Concerned with aversive nature of previously
reported interventions, Daniel (1982) based his
25
Rumination
707
intervention(s) that produced the change in rumination, and not other variables, would be necessary in order to conclude that an intervention is
evidence-based.
The earliest, and most frequently used design
in examining efcacy of rumination treatments is
the withdrawal design. This design involves collecting baseline, or pre-intervention data, introducing the intervention when stable baseline data
are attained, withdrawing intervention once a
stable intervention effect has been attained, and
then reintroducing intervention. This method of
evaluation permits examination of extent to
which the data path that results from initial introduction of intervention differs from that which
would be expected had intervention not been
introduced; extent to which the data path returns
to its pre-intervention pattern when intervention
is withdrawn and baseline procedures are reintroduced; and extent to which the change in behavior that followed the rst introduction of
intervention is produced following the second
introduction of intervention. When the data path
that follows initial introduction of intervention
differs from that observed during baseline, and
when the data path trends back toward baseline
levels when intervention is withdrawn, and when
the change in the data path observed after initial
introduction of the intervention is observed following second introduction of intervention, then
one can say that functional control over the
behavior has been demonstrated by the
intervention.
Libet et al. (1973) and Sajwaj et al. (1974)
employed very similar withdrawal designs, in
which baseline data collection on percentage of
intervals in which rumination occurred was followed by introduction of contingent presentation
of lemon juice. Following stable reduction in rate
of rumination, intervention was temporarily
withdrawn, and frequency of rumination trended
toward its baseline level. Reintroduction of contingent lemon juice procedure was followed by
resumption of the greatly lowered frequency of
rumination, which eventually tended toward zero
frequency. Carroll et al. (2011) and Thibadeau
et al. (1999) also employed simple withdrawal
designs in assessing efcacy of noncontingent
708
Conclusion
Rumination is a potentially life-threatening
behavior (Fredericks et al., 1998), which also
carries with it other health effects (Gal et al.,
25
Rumination
709
710
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26
Pica
Don E. Williams and David McAdam
Introduction
Pica refers to the persistent eating of nonedible
items. The term pica comes from the Latin term
for magpie, a bird famous for having a voracious
indiscriminate appetite (Danford & Huber, 1982).
Both nonhuman organisms (e.g., cats, dogs, buffalo) and humans engage in pica. Persons who display pica may eat a wide variety of items including
nonedible plants, rock salt, small pieces of plastic
toys, jewelry, soiled diapers, cigarette butts, cloth,
screws, nuts, bolts, coins, and rubber gloves used
in hospitals and care facilities (McAdam,
Breidbord, Levine, & Williams, 2012; McAlpine
& Singh, 1986; Singh, 1997; Williams,
Kirkpatrick-Sanchez, Enzinna, Dunn, & BordenKarasack, 2009). Some persons with pica only target specic items (e.g., cigarettes), whereas others
display indiscriminative pica and routinely ingest
a wide variety of objects depending on what is
available in their current environment (Foxx &
Martin, 1975). In some cases, pica may be associ-
715
716
Assessment of Pica
Contemporary functional assessment standards
suggest that an assessment of the operant variables maintaining pica should be conducted to
aid in the development of a function-based
behavior treatment plan, whenever possible.
Functional assessment methods can be divided
into two categories: (a) indirect and (b) direct.
Indirect methods include questionnaires and
interviews. Direct methods include both correlational and experimental approaches. Indirect
methods alone are often not adequate for determining the operant function of problem behavior.
Therefore, given the potential severity of pica
and the potential for serious consequences, we
recommend that a functional analysis should
always be conducted (Hanley, Iwata, & McCord,
2003). However, it might be feasible if automatic
reinforcement is the presumed function to just
run an extended alone condition sessions (Iwata
& Dozier, 2008). To date, the pica behaviors of
the vast majority of persons with intellectual and
26
Pica
717
Evidence-Based Treatments
One of the most recent, comprehensive metaanalysis of the pica literature included 35 studies
and 59 participants (McAdam et al., 2012).
Studies included had a baseline and intervention,
and two effect size measures were calculated
(i.e., percentage of nonoverlapping data and percentage of zero data). Excluded were studies with
unreadable data graphs, treatment-only analyses
of intervention packages, alternating treatment
designs, and comparisons of two or more treatments that did not include a baseline comparison.
Criteria based on research evaluation and independent replication as presented by (Chambless
and Hollon 1998) were employed. The following
were the key ndings of the meta-analysis: (1)
There is well-established evidence for the
718
Well-Established Treatments
for Short-Term Effectiveness
Noncontingent
reinforcement
(NCR).
Noncontingent reinforcement is the delivery of
the reinforcer independent of the response or on a
time-based delivery of reinforcer (Vollmer, Iwata,
Zarcone, Smith, & Mazaleski, 1993). A number
of studies have demonstrated that the noncontingent delivery of food or toys may successfully
reduce pica to manageable levels. Favell et al.
(1982) reduced the pica of three adolescents with
profound intellectual disabilities through the
noncontingent presentation of toys (e.g., small
balls, rubber rings) and popcorn. Noncontingent
popcorn was provided to give participants an
alternative source of sensory stimulation. Piazza,
Hanley, and Fisher (1996) and Piazza et al. (1998)
conducted two studies that built on the work of
Favell et al. (1982). Initially, Piazza et al. (1996)
showed that the cigarette pica of a 17-year-old
male with severe intellectual disability and
autism was maintained by a physiological variable (i.e., nicotine). Then, the pica was reduced
by implementation of a treatment package that
26
Pica
719
intellectual disabilities by comparing briey holding arms to the side for 10 s versus 30 versus 1 min
release criteria. Pica was reduced from 22.7 % of
intervals per 15 min session to 3 %. Within the
framework of an alternating treatment design
embedded within a multiple-baseline design, the
durations of brief physical restraint were compared. Physical restraint consisted of holding the
participants hands to their side for the full duration of the restraint. All three durations of physical
restraint were clinically effective; however, no
maintenance data were collected, so condent
conclusions could not be reached about long-term
effectiveness.
Singh and Bakker (1984) used brief duration
holding arms to side for 10 s. The two participants, a 21-year-old female with profound intellectual disabilities and a 20-year-old female with
profound intellectual disabilities, were signicantly improved. The rst participant engaged in
pica for 32.2 % of intervals and only 1.3 % after
treatment. The second participant was at 10.8 %
of interval pretreatment and 0.9 % after treatment. Again, an alternating treatment design was
used. Paniagua, Braverman, and Capriotti (1986)
used physical restraint (arms held in rigid vertical
position for 30 s) as part of a multicomponent
intervention package to reduce the pica of a
4-year-old girl with a profound intellectual disability. Pica was reduced from 52 % of intervals
to less than 10 % during a 10-min session. A
multiple-baseline design was used, and the results
obtained replicated earlier studies.
LeBlanc, Piazza, and Krug (1997) used an
alternating treatment comparison of physical
restraint (i.e., canvas arm sleeves, a helmet, and
face mask) versus response blocking for a 4-yearold girl with profound intellectual disability.
During the response blocking condition, the participant did not wear any protective equipment.
Response blocking consisted of pushing the participants hand holding the pica item down before
she could place it in her mouth. The results of the
alternating treatment analysis demonstrated that
both procedures successfully eliminated pica.
LeBlanc et al. suggested that response blocking
was the more appropriate treatment because it
720
26
Pica
721
722
Summary of Interventions
Virtually all published studies of behavioral treatment show reductions in pica (McAdam, Sherman,
Sheldon, & Napolitano, 2004; McAdam et al.,
2012). However, when one looks at evidencebased treatments, interesting results can be seen.
The meta-analysis by McAdam et al. (2012)
found that only three behavioral interventions
26
Pica
723
Practice Recommendations
Because there have been no major prevalence
surveys of pica in the last 30 years, there may be
a need for recent prevalence estimates, both in
institutionalized and community settings. The
Behavior Problem Inventory (Rojahn, Matson,
Lott, Esbensen, & Smalls, 2001) is one tool that
can be used for this purpose. This rating scale can
be used, because individual self-identify by
engaging in a serious episode of pica (McAlpine
& Singh, 1986). Because only the most severe
724
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Dunn, J., & Borden-Karasack, D. (2009). The clinical
Aggressive Behavior
27
Introduction
Individuals with intellectual and developmental
disabilities (IDDs) have an increased risk for the
development of challenging behavior such as
aggressive behavior. Aggressive behavior is
common in this target group, and it is most often
targeted for intervention (see Jahoda, Willner,
Pert, & MacMahon, 2013). The aim of this chapter is to provide a review of the evidence-based
strategies for aggressive behavior in individuals
with IDD. After dening aggression, we summarize studies on its prevalence and associated
risk factors. We then provide a selective review
R. Didden (*) N. Peters-Scheffer
Behavioural Science Institute, Radboud University
Nijmegen, Nijmegen, The Netherlands
e-mail: r.didden@pwo.ru.nl
W.R. Lindsay
Danshell Healthcare, 119 Americanmuir Rd., Dundee
DD3 9AG, Scotland, UK
University of West of Scotland (UWS), UK
R. Lang
Department of Curriculum and Instruction,
Texas State University, San Marcos, TX, USA
J. Sigafoos
School of Educational Psychology, Victoria
University of Wellington, Wellington, New Zealand
S. Deb
Division of Brain Sciences, Department of Medicine,
Imperial College London, London, UK
Springer International Publishing Switzerland 2016
N.N. Singh (ed.), Handbook of Evidence-Based Practices in Intellectual and Developmental
Disabilities, Evidence-Based Practices in Behavioral Health, DOI 10.1007/978-3-319-26583-4_27
727
728
R. Didden et al.
Epidemiology of Aggressive
Behavior
Relatively many studies on the prevalence of
aggression and its associated (risk) factors have
been conducted in individuals with IDD. Sigafoos,
Elkins, Kerr, and Attwood (1994) conducted a survey on aggressive behavior among 2412 persons
with IDD in Queensland (Australia). Two hundred
and sixty-one individuals were identied who
engaged in at least one form of aggressive behavior, yielding an overall prevalence of 11 %. The
relative prevalence of aggressive behavior was
higher among institutionalized persons (35 %)
when compared to those living in group homes
(17 %) or other community-based facilities (3 %).
More males (64 %) than females showed a type of
aggressive behavior. Most were described as functioning in the severe/profound (54 %) or moderate
(31 %) range of IDD. Most individuals showed
more than one topography of aggression. In
another population-based study, Emerson et al.
(2001) found aggression occurring in 7 % of individuals with IDD. In non-population-based studies, aggression is the most common type of
challenging behavior, with studies reporting prevalence rates ranging from 9 % to higher than 50 %
(see Jahoda et al., 2013; Tenneij et al., 2009).
McClintock et al. (2003) conducted a metaanalysis of risk factors for challenging behaviors
(including aggression) in individuals with
IDD. Factors identied were gender (with males
having higher rates of aggression than females),
level of IDD (with lower levels of IDD showing
an increased risk), autism spectrum disorder, and
communication decits. Also, anger and violence, impulsivity, and mental health problems
(e.g., depression) were identied as being risk
factors for aggression in individuals with
IDD. Tenneij et al. (2009) explored risk factors
for aggression in a sample of 108 individuals
with mild to borderline IDD who were referred to
an inpatient treatment facility. Results of this
study show that antisocial behaviors, impulse
control problems, psychotic behaviors, moodrelated behaviors, and self-injurious behavior
increased the likelihood of severe aggression in
these individuals.
27 Aggressive Behavior
Evidence-Based Treatments
In this section, we review the evidence based on the
four categories of intervention for aggressive behavior in individuals with IDD: anger management
treatment, behavioral interventions, psychotropic
medications, and mindfulness.
729
730
R. Didden et al.
27 Aggressive Behavior
731
732
R. Didden et al.
27 Aggressive Behavior
733
Behavioral Interventions
In comparison to treatment approaches that focus
on altering conditions and processes that are
within the skin (Skinner, 1993, p. 24) such as
levels of neurochemicals and cognitive processes,
behavioral interventions can be dened by their
focus on the external environment. Specically,
behavioral approaches to the treatment of aggression are designed to alter behaviorenvironment
interactions through some combination of (a)
teaching new behaviors, (b) environmental
arrangement or enrichment, (c) altering contingencies of reinforcement, and/or (d) manipulation
734
R. Didden et al.
27 Aggressive Behavior
735
behavior no longer produces the desired reinforcer as a result of an extinction procedure, the
individual may engage in more frequent or
intense challenging behavior before the
challenging behavior is reduced. In other words,
when extinction is applied to aggression, without
some other mitigating intervention component,
the individual may initially become more aggressive before aggression is reduced below baseline
levels. This phenomenon is referred to as an
extinction burst (Lerman & Iwata, 1995, 1996).
For example, OReilly, Lancioni, and Taylor
(1999) evaluated the use of extinction to treat
aggression (i.e., biting, scratching, and hitting) of
a 10-year-old boy with mild IDD. A functional
analysis indicated that his aggressive behaviors
were maintained by attention from family members. When aggression was placed on extinction
(i.e., attention was not given following aggression), aggression initially increased from a mean
of approximately 20 % of intervals across three
baseline sessions to a mean of approximately
47 % of intervals during the rst two intervention
sessions, before eventually reducing to 0 % of
intervals in subsequent intervention sessions.
OReilly et al. demonstrate that extinction may
ultimately be effective but highlights the need for
caution, particularly when applied to aggression.
Differential reinforcement. Reinforcement is
the foundation of the overwhelming majority of
behavioral interventions and is the essential
active ingredient within intervention packages
that involve teaching a new behavior.
Reinforcement involves the presentation (positive reinforcement) or removal (negative reinforcement) of a stimulus contingent upon a target
behavior that results in that behavior occurring
more often in the future (Cooper, Heron, &
Heward, 2007). Differential reinforcement is a
behavior reduction strategy that involves a combination of extinction and reinforcement in which
the behavior selected for reduction (e.g., aggression) is placed on extinction and an alternative
behavior (or the omission of some behavior) is
reinforced (Cooper et al., 2007). Doehring et al.s
(2014) review reported that 34 % of participants
across the 101 studies reviewed received some
form of differential reinforcement.
736
R. Didden et al.
27 Aggressive Behavior
737
738
proactive approaches to the treatment of challenging behavior that involve changes to the
environment, routines, and presentation of tasks
made prior to the occurrence of challenging
behavior that result in a reduced likelihood that
challenging behavior will occur (Kern, Choutka,
& Sokol, 2002). Antecedent-based treatment
approaches may be based on the results of an
FBA or functional analysis (e.g., Luiselli, Dunn,
& Pace, 2005) or may involve the inclusion of
choice opportunities and/or environmental
enrichment without prior functional assessment
(e.g., Fava & Strauss, 2010). An attribute of
antecedent-based treatment components is that
they often preclude the occurrence of aggression (and other challenging behaviors), and thus
the reductive effect may be immediate; however, a weakness noted in the literature is that
interventions that involve only antecedent-based
components (i.e., those lacking a consequencebased strategy within the intervention package)
do not teach new appropriate behaviors, and,
therefore, withdrawal of the intervention may
result in the reoccurrence of aggression, perhaps
even at levels higher than baseline (Luczynski
& Hanley, 2013).
For example, Luczynski and Hanley (2013)
randomly assigned matched pairs of 12 preschool
children who engaged in hitting, pinching, grabbing, slapping, and other topographies of aggression and challenging behavior and who were
considered at risk for school failure due to delays
in communication and self-help skills to either a
treatment condition that involved components
designed to teach communication and self-help
skills or to a condition that emphasized
antecedent-based components (i.e., ensuring sufcient attention, toys and task materials were
present at all times to preclude the need for
aggression maintained by access to those stimuli). This study demonstrated that children in the
rst group acquired communication and self-help
skills, whereas children in the second group did
not acquire new skills. Further, when returned to
baseline conditions, the antecedent-based intervention group experienced an increase in aggression, while the skill instruction groups decrease
in aggression was maintained.
R. Didden et al.
27 Aggressive Behavior
739
Psychotropic Medications
Psychotropic medications are used regularly for
the management of problem behavior including
aggression and self-injurious behavior (SIB) in
people with IDD in the absence of a diagnosed
psychiatric disorder (Deb, Unwin, & Deb, 2015).
This practice is controversial because these medications are not licensed for this purpose, the scientic evidence to support their use is often
lacking, these medications could potentially
cause long-term adverse effects, and once started
withdrawal of these medications is difcult
(Hemmings, Deb, Chaplin, Hardy, & Mukherjee,
2013). Psychotropic medications used for this
purpose include antipsychotics; antidepressants;
mood stabilizers including antiepileptics, psychostimulants, opioid antagonists, and betablockers; and antianxiety medications (Deb,
2013). In this chapter, we have summarized the
evidence for psychotropic medication, but a
fuller description of the evidence is provided in
Chap. 13 (Deb, 2016).
Systematic reviews have found that the highest number of randomized controlled trials
(RCTs) is on new generation antipsychotics,
740
R. Didden et al.
27 Aggressive Behavior
741
ten crossover trials of naltrexone for the treatment of primarily self-injury in adults with ASD
with or without IDD. The number of participants
included ranged between 4 and 24 and the study
period ranged from 4 to 17 weeks. Only two studies found a signicant improvement in the naltrexone group compared with the placebo. Eleven
(9 %) out of overall 124 participants included in
these ten studies reported minor adverse effects.
Because of the small number of participants
included, a relatively short period of follow-up,
and lack of signicant results, it is difcult to
draw any denitive conclusion about the efcacy
of naltrexone in the treatment of SIB and aggression among adults with ASD and/or IDD.
Antianxiety medication. King and Davanzo
(1996) reported in a prospective uncontrolled
study of 26 adults with IDD (age range 2563
years) (46 % male) on the effect of buspirone
2560 mg/day (average 52 mg/day) on aggression and/or SIB in people with IDD. This study
did not show any improvement from buspirone.
There is little evidence currently to recommend
any antianxiety medication for the long-term
management of problem behaviors including
aggression in people with IDD. The benzodiazepine group of medications carries the risk of
tolerance and dependence in the long run. The
evidence for the effectiveness of buspirone is
currently poor; therefore, it cannot be recommended. However, for the general population,
some selective serotonin reuptake inhibitors
(SSRIs), selective norepinephrine reuptake
inhibitors (SNRIs), an antiepileptic medication
pregabalin, and an antipsychotic quetiapine are
now recommended treatments for anxiety-related
disorders (Bandelow et al., 2008; NICE guide on
the management of anxiety disorders; www.nice.
org.uk). In the eld of IDD, some antipsychotics
are prescribed in a smaller than antipsychotic
dose to manage problem behaviors with the
assumption that at a lower dose antipsychotics
may work as antianxiety medications, although
the evidence to support this assumption currently
is not available from the literature.
Beta-blockers. Ward, Tharian, Roy, Deb, and
Unwin (2013) have recently published a systematic review on the use of beta-blocker medications
742
such as propranolol, nadolol, acebutolol, metoprolol, and oxprenolol in the treatment of problem
behavior in children and adults with IDD. They
found 14 studies primarily on propranolol, dose
ranging up to 340 mg a day, that included between
1 and 19 participants. However, as none of these
studies are RCTs, it is difcult to draw any denitive conclusion on the efcacy of beta-blocker
medications in the treatment of problem behavior
including aggression among people with IDD.
Psychostimulants. Most studies of psychostimulants have been used on people with a diagnosis of attention decit hyperactivity disorder
(ADHD). Therefore, almost all the studies used
ADHD symptoms as outcome measures than
problem behavior or aggression per se, although
problem behaviors are often included in the outcome measures as part of the ADHD symptoms.
Therefore, it is difcult to nd any evidence to
prove the effectiveness of psychostimulants specically for the management of problem behavior or aggression per se in people with IDD
without a diagnosis of ADHD. One study by
Aman and Singh (1982) used an RCT design to
compare methylphenidate with placebo for the
management of different problem behaviors
among 28 participants (aged 13.626.4 years)
with IDD. Overall, no signicant effect was
found from the medication.
Mindfulness
A relatively novel intervention approach to
aggression in individuals with (mild) IDD is
mindfulness. Singh, Wahler, Adkins, and Myers
(2003) have developed a procedure called mediation on the soles of the feet with which individuals are taught to recognize the precursors of
aggression, to disengage their attention to the
precursor(s), and to focus their attention to a neutral point of the body (i.e., Soles of the Feet
(SoF)). Precursors of aggression may be behaviors and/or emotions that precede a type of
aggression and that increase the likelihood of
aggression. Mindfulness may be viewed as a coping strategy with which the individual may
prevent the occurrence of aggressive behavior. In
R. Didden et al.
27 Aggressive Behavior
743
R. Didden et al.
744
relaxation with a control group who had a storytelling condition. Participants IDD ranged from
profound to mild, and they were selected because
they regularly displayed destructive behavior in
activity groups. The results demonstrated signicant and substantial reductions in disruptive
behavior for participants receiving relaxation
with no changes in the control condition.
Unfortunately, at 12-week follow-up, disruptive
behavior had returned to baseline levels. There
have been no equivalent studies on most other
aspects of AMT including emotional recognition,
cognitive restructuring, the establishment of an
anger hierarchy, or presenting information concerning the purpose of anger. As has been indicated, there has been one study demonstrated the
effectiveness of the stress inoculation aspect of
AMT (Travis & Sturmey, 2013). Therefore, there
is evidence that relaxation coupled with stress
inoculation and a focus on adaptive responses to
these situations are effective components of
AMT.
A large number of studies have been published
on the effectiveness of behavioral interventions
for challenging behavior (e.g., aggressive behavior) in individuals with IDD. There is strong
evidence from reviews and meta-analyses that
behavioral interventions are effective in reducing
aggression in this target group. Especially, extinction procedures, procedures of differential reinforcement, and functional communication
training are strategies of evidence-based practice.
Before implementing a behavioral intervention,
the function(s) of the aggressive behavior should
be determined using functional assessment.
Results from several meta-analyses show that
functional assessment prior to intervention predicts high treatment effect sizes (see, e.g., Didden
et al., 2006). Functional assessment provides clinicians with information about alterations to the
social and/or physical context and adaptive skills
that need to be strengthened.
On the basis of the scientic evidence currently available, it is difcult either to recommend
or to refute the use of psychotropic medications
for the management of problem behaviors such as
aggression in people with IDD. Good-quality evidence is available only for risperidone among
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28
Stereotypy
John T. Rapp and Marc J. Lanovaz
Introduction
Individuals with intellectual disabilities often
engage in one or more forms of repetitive behaviors such as body rocking, hand apping, head
rolling, object twirling, and echolalia (Bodsh,
Crawford, Powell, & Parker, 1995). These repetitive behaviors are commonly referred to as stereotypy in the research literature on challenging
behaviors (De Winter, Jansen, & Evenhuis, 2011;
Lloyd & Kennedy, 2014). Given that stereotypy
may take on many forms, Rapp and Vollmer
(2005) proposed three dening characteristics to
differentiate stereotypy from other forms of challenging behaviors. According to Rapp and
Vollmer, stereotypy is characterized by (a) repetition, (b) movement invariance, and (c) persistence in the absence of social consequences. In
other words, stereotypy is a category of repetitive
invariant behaviors that have a nonsocial function; however, note that Rapp and Vollmer
excluded repetitious, injurious behaviors from
751
752
been associated with a number of behavioral decits, which underline the importance of targeting
it for reduction. First, to some extent, researchers
have shown that engaging in stereotypy may
interfere with learning new behavior (e.g., Chung
& Cannella-Malone, 2010; Koegel & Covert,
1972; Lang et al., 2009; Lang, OReilly, et al.,
2010). In a recent review, Lanovaz, Robertson,
Soerono, and Watkins (2013) found that reducing
engagement in stereotypy may increase engagement in socially appropriate behavior, suggesting
that stereotypy may interfere with their occurrence. Second, higher levels of stereotypy have
been associated with more signicant impairments in adaptive behavior, social skills, and
executive functioning as well as with the presence of self-injurious behaviors in individuals
with intellectual and developmental disabilities
(Bodsh et al., 1995; Evans, Kleinpeter, Slane, &
Boomer, 2014; Gabriels, Cuccaro, Hill, Ivers, &
Goldson, 2005; LeMonda, Holtzer, & Goldman,
2012; Matson, Cooper, Malone, & Moskow,
2008; Matson, Kiely, & Bamburg, 1997; Matson,
Minshawi, Gonzalez, & Mayville, 2006;
Richman et al., 2013). Reducing stereotypy may
potentially improve the functioning of the individual and eventually facilitate social inclusion.
Finally, Jones, Wint, and Ellis (1990) have shown
that engaging in stereotypy may be a barrier to
the inclusion of individuals with intellectual disabilities. Their results indicated that adolescents
held more negative attitudes toward individuals
who engaged in stereotypy than those who did
not, which strongly supports the importance of
reducing stereotypy in community settings.
28 Stereotypy
753
754
28 Stereotypy
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756
Antecedent Interventions
Based on the guidelines provided by Kratochwill
et al. (2010), we identied two antecedent interventions with either strong or moderate evidence.
In addition, there are a handful of antecedent
interventions with little or no evidence. For each
of the two antecedent interventions, we describe
(a) a recent study that best illustrates the effects
on stereotypy and (b) the potential strengths and
limitations of the intervention from a practical
perspective.
Strong evidence. This section will include
descriptions of antecedent interventions with
considerable empirical support. As indicated in
prior literature reviews (e.g., DiGennaro Reed
et al., 2012; Rapp & Vollmer, 2005), noncontingent reinforcement (NCR) with matched stimulation may be the most empirically supported
intervention for treating vocal stereotypy
(Lanovaz, Fletcher, and Rapp, 2009; Lanovaz,
Rapp, and Ferguson, 2012; Lanovaz, Sladeczek,
and Rapp, 2011, 2012; Love, Miguel, Fernand,
and LaBrie, 2012; Rapp, 2007; Rapp et al., 2013;
Saylor, Sidener, Reeve, Fetherston, and Progar,
2012; for a review of behavioral interventions for
vocal stereotypy, see Lanovaz & Sladeczek,
2012) and motor stereotypy (Dozier, Iwata,
Wilson, Thomason-Sassi, & Roscoe, 2013; Goh
et al., 1995; Higbee, Chang, & Endicott, 2005;
Lanovaz & Argumedes, 2010; Piazza et al., 2000;
Rapp et al., 1999; Simmons, Smith, &
Kliethermes, 2003; Tang, Patterson, & Kennedy,
2003; Wilder, Kellum, & Carr, 2000). Piazza
et al. (1998, 2000) introduced the concept of
matching the overt stimulation generated by
engaging with alternative items to the putative
stimulation generated by engaging in automatically reinforced behavior (e.g., pica, motor stereotypy). The process for identifying matched
stimuli is twofold. First, a practitioner employs a
method of preference assessment to evaluate the
extent to which the individual displays a relative
preference for matched items. Second, a practitioner evaluates the extent to which engagement
with preferred matched (or unmatched) items
competes with engagement in stereotypy using a
competing stimulus assessment or another brief
assessment couched within an appropriate SCED.
Based on methodology articulated by Simmons
et al. (2003), Lanovaz et al. (2009) and Rapp (2007)
later distinguished between a structurally matched
stimulus, as identied by procedures described by
Piazza et al. (2000), and a functionally matched
stimulus, which was not only structurally matched
to the putative product of stereotypy but also was
empirically demonstrated to decrease immediate engagement in the targeted stereotypy without
increasing stereotypy (relative to a no-intervention
baseline) after the preferred item was removed.
We elaborate on procedures and methodology
for identifying functionally matched stimuli in
the Translation of Research to Practice section
below. For purposes of this section, matched stimulation need only be shown to decrease immediate
engagement in the targeted stereotypy.
A study by Lanovaz, Rapp, et al. (2012) illustrates the procedures for implementing NCR with
continuous access to matched stimulation for
decreasing vocal stereotypy for multiple participants. Although xed and variable time schedules
are variations of NCR, nearly all of the studies
cited here involved NCR with continuous access
to empirically identied items (the main exception
being those that used edible stimuli to reduce
mouthing). Based on the hypothesis that auditory
stimulation from music would compete with auditory stimulation produced by engagement in vocal
stereotypy, Fig. 28.1 shows that Lanovaz et al.
identied each participants most and least preferred music genres using a variation of pairedchoice preference assessment (Horrocks &
Higbee, 2008). Thereafter, Lanovaz et al. demonstrated that vocal stereotypy persisted across consecutive no-interaction sessions for each of their
28 Stereotypy
757
100
50
80
40
60
30
40
20
20
10
Low Preference
Music
High Preference
Music
0
Caillou
Barney
K naan Shakira
Chopin
100
60
40
20
0
L. Gaga Twinkle Beyonc
Inna
Rihanna
100
80
60
40
20
0
50
80
Eric
Fred
40
30
20
10
0
0
50
Greg
40
30
20
10
0
100
100
80
80
60
60
40
40
20
20
David
0
Beyonc J. Bieber S. Street Chopin Shakira
Music
Fig. 28.1 Percentage of trials Eric, Fred, Greg, and
David selected each song (left) and percentage of time
each participant engaged in vocal stereotypy when highand low-preference music played (right). Reprinted from
Lanovaz, M. J.; Rapp, J. T.; and Ferguson, S. (2012). The
Sessions
utility of assessing musical preference before implementation of noncontingent music to reduce vocal stereotypy.
Journal of Applied Behavior Analysis, 45, 845851.
doi:10.1901/jaba.2012.45-845
758
Not unlike NCR, interventions involving antecedent exercise potentially contain provisions of
alternative forms of stimulation, which may compete with or substitute for stimulation generated
by engaging in stereotypy (e.g., Morrision,
Roscoe, and Atwell, 2011). However, interventions involving antecedent exercise differ from
those involving NCR insofar as the former interventions typically involve active participation in
gross motor movements that increase cardiovascular activity (e.g., jogging for 20 min), whereas
the latter interventions may involve passive,
sedentary consumption of ambient stimulation
(e.g., listening to music or manipulating items
that produce auditory stimulation).
Lang, Koegel, et al. (2010) recently reviewed
group-design and SCED studies on the effects of
physical exercise on problem behavior displayed
by individuals with ASD. Lang, Koegel, et al.
highlighted a number of interpretative problems
with several studies in this area of the literature;
however, they concluded that the overall results
suggest individuals with ASD may benet from
regular physical activity. Several SCED
(Bachman & Sluyter, 1988; Celiberti, Bobo,
Kelly, Harris, & Handleman, 1997; Kern, Koegel,
& Dunlap, 1984; Kern, Koegel, Dyer, Blew, &
Fenton, 1982; Morrision et al., 2011; Watters &
Watters, 1980) and group-design (e.g., RosenthalMalek & Mitchell, 1997) studies provide evidence of the effects of physical exercise for
reducing one or more forms of vocal or motor
stereotypy. Because the actual procedures vary
from study to study (jogging is among the most
common activities), the extent to which physical
exercise should be referred to as a unitary independent variable is not clear. Nevertheless, physical exercise should be viewed as an intervention
with moderate evidence for decreasing motor
stereotypy.
A study by Morrision et al. (2011) illustrates
the manner in which interventions involving
antecedent exercise should be developed and
implemented to decrease motor stereotypy or
other problem behaviors for individuals with
autism. Morrison et al. rst conducted pairedchoice stimulus preference assessments to identify leisure and exercise items for two individuals
28 Stereotypy
759
100
100
80
80
60
60
40
40
20
20
No-Interaction
0
0
Eric
10
12
100
100
80
80
60
60
40
40
20
20
Fred
0
0
100
100
80
80
60
60
40
40
20
20
10
12
Greg
0
0
Sessions
100
David
80
60
40
20
0
0
10
5-min intervals
Fig. 28.2 Percentage of time Eric, Fred, Greg, and David
engaged in vocal stereotypy during the free-operant
observation periods (left) and during no-interaction and
high-preference music sessions (right). Reprinted from
Lanovaz, M. J.; Rapp, J. T.; and Ferguson, S. (2012). The
utility of assessing musical preference before implementation of noncontingent music to reduce vocal stereotypy.
Journal of Applied Behavior Analysis, 45, 845851.
doi:10.1901/jaba.2012.45-845
760
Consequence Interventions
Based on the guidelines provided by Kratochwill
et al. (2010), there are four consequent interventions for motor and vocal stereotypy with strong
or moderate evidence. To be dened as
consequent-based intervention, the treatment in
questions has to include delivery of a specied
consequence for (a) engagement in motor or
vocal stereotypy, (b) engagement in appropriate
response (e.g., task engagement, communication), (c) not engaging in motor or vocal stereotypy, or (d) any combination of (a), (b), and (c).
As with antecedent interventions, our description
of each consequent intervention includes a recent
study that best illustrates the effects on stereotypy, as well as the potential strengths and limitations of the consequent intervention.
Strong evidence. There is only one consequentbased intervention for stereotypy that ts into this
category. Research on overcorrection procedures
for stereotypy and other problem behavior spans
over four decades. We should note that just
because there is strong empirical support for the
use of overcorrection procedures to decrease stereotypy does not mean that it should be viewed as
a
rst-line
intervention.
Contrarily,
reinforcement-based procedures with at least
moderate empirical support should be implemented prior to interventions involving either
positive or negative punishment (e.g.,
Miltenberger, 2012).
28 Stereotypy
761
762
with preferred items produced clinically signicant decreases in motor or vocal stereotypy
(Fritz, Iwata, Rolider, Camp, and Neidert, 2012;
Lanovaz and Argumedes, 2010; Lustig et al.,
2013; Nuernberger, Vargo, and Ringdahl, 2013;
Patel, Carr, Kim, Robles, and Eastridge, 2000;
Repp, Dietz, and Speir, 1974; Ringdahl et al.,
2002; Shabani, Wilder, and Flood, 2001;
Rozenblat, Brown, Brown, Reeve, and Reeve,
2009; Taylor, Hoch, & Weissman, 2005, but see
Lanovaz and Argumedes, 2009). As a collective
whole, studies in this literature meet all three criteria for demonstrating strong evidence; however,
we have placed DRO in the category of moderate
evidence for two reasons. First, although each of
the aforementioned studies decreased motor or
vocal stereotypy using DRO, only half of the
aforementioned studies demonstrated (or
attempted to demonstrate) that the DRO schedule
could be thinned to a practical variation (e.g.,
DRO 5 min). We suspect that practitioners will
nd DRO with small intervals (e.g., 30 s) to be of
limited utility in applied settings. Second, in
about a third of the studies that did thin the DRO
schedule to at least 5-min intervals, researchers
implemented self-monitoring procedures with
participants prior to applying DRO procedures.
As such, it is not clear whether DRO procedures
will decrease stereotypy to the same extent for
individuals who cannot monitor their own
behavior.
A study by Taylor et al. (2005) exemplies the
steps that are needed to decrease stereotypy using
DRO. First, Taylor et al. demonstrated that the
vocalizations of a 6-year-old girl persisted across
test and control condition of a functional analysis. Next, Taylor et al. used a multielement design
to show that the participants vocal stereotypy
decreased with matched toys (i.e., those that produced auditory stimulation). Subsequently,
Taylor et al. used a concurrent operant assessment (i.e., a variation of a preference assessment)
to demonstrate that the participant preferred to
manipulate operative auditory toys (matched
toys) over nonoperative auditory toys (matched
toys without batteries). Using an ABCBC reversal design, where B denotes xed-time (FT)
1 min delivery of matched, operative toys and C
28 Stereotypy
763
764
Combining Antecedent
and Consequent Interventions
The implementation of interventions involving
stimulus control procedures (most often the signaled delivery of a positive punisher) is predicated on the assumption that engagement in
stereotypy can be permitted in some situations
(e.g., during leisure time), but not others (e.g.,
during instructional periods). Across studies,
researchers have used various punishment procedures (e.g., verbal reprimands, response blocking, RC, RIRD, TO) for engagement in vocal or
motor stereotypy and various antecedent stimuli
(e.g., poster boards, wrist bands) to signal punishment delivery, and some have include reinforcement for appropriate behavior (Anderson,
Doughty, Doughty, Williams, & Saunders, 2010;
Brusa & Richman, 2008; Conroy, Asmus, Sellers,
& Ladwig, 2005; Cook, Rapp, Gomes, Frazer, &
Lindblad, 2014; Doughty, Anderson, Doughty,
Williams, & Saunders, 2007; Haley, Heick, &
Luiselli, 2010; Langone, Luiselli, & Hamill,
2013; McKenzie, Smith, Simmons, & Soderlund,
2008; OConnor, Prieto, Hoffman, DeQuinzio, &
Taylor, 2011; Rapp et al., 2009). Furthermore,
studies vary considerably in the duration of the
free access (when stereotypy is permitted) versus
restricted access (when mild punishment is provided contingent on stereotypy) conditions.
These variations notwithstanding, there is
28 Stereotypy
765
burgeoning empirical support for the use of stimulus control procedures to treatment motor and
vocal stereotypy; however, as with RIRD, the
extent to which studies in the category evaluated
a common intervention is debatable. Nevertheless,
because stimulus control procedures have the
potential to be useful in a variety of settings, we
have opted to highlight the application of such
procedures in this section.
A recent study by Cook et al. (2014) evaluated
(a) the extent to which verbal reprimands
decreased ve individuals engagement in targeted and untargeted stereotypy and (b) whether
inhibitory stimulus control of the targeted stereotypy could be acquired during a signaled punishment condition. The effects of the procedures are
illustrated here for a participant named Hannah.
Prior to conducting the treatment evaluation,
Cook et al. (2014) showed that Hannahs body
rocking and arm apping occurred almost exclusively when music was present (see Fig. 28.3).
During the NC condition, the participant had free
access to engage in the targeted or untargeted stereotypy without social consequence. During the
100
100
90
NI music
90
80
80
70
70
60
60
50
50
40
40
30
Body rocking
30
20
20
10
10
0
2
10
NI no music
12
Arm flapping
10
12
Sessions
Fig. 28.3 Percentage of time Hannah engaged in body
rocking (left panel) and arm apping (right panel) during
no-interaction (NI) music versus NI no music conditions.
Reprinted from Cook, J. L.; Rapp, J. T.; Gomes, L. A.;
766
intervention. Finally, as shown with other participants in the Cook et al. (2014) study, punishment
procedures may either increase or decrease untargeted forms of stereotypy (Lanovaz et al., 2013).
Practitioners may also nd that it is necessary to
implement one intervention in one context and a
different class of intervention in another context
for the same individual. For example, a trainer
could use signaled RIRD, with the intention of
producing inhibitory stimulus control of stereotypy during instructional segments and NCR
with matched stimulation during leisure periods.
28 Stereotypy
767
768
Topography
Context
Intervention #1
Intervention #2
Intervention #3
Vocal stereotypy
All
Motor stereotypy
Free time/play
Task/work/learning
Differential reinforcement
with prompting
Differential reinforcement
with prompting
Differential reinforcement
with prompting and RIRD or
overcorrection
28 Stereotypy
769
770
Implement function-based
intervention
If ineffective
If effective
Step 4: Implementation of intervention on a regular basis
Fig. 28.6 Sequential treatment assessment model for stereotypy. Based on Fig. 28.1 from Lanovaz, M. J.; Rapp,
J. T.; and Fletcher, S. M. (2010). Expanding functional
771
28 Stereotypy
Percentage of Time
1st Component
2nd Component
3rd Component
100
100
100
80
80
80
60
60
60
40
40
40
20
20
100
100
100
80
80
80
60
60
60
40
40
40
20
20
20
NI
0
2
10 12
20
RIRD
motor stereotypy
vocal stereotypy
0
2
10 12
10
12
Sessions
30
Emmett
25
20
15
10
5
0
1
RIRD Sessions
Fig. 28.7 Percentage of time Emmett engaged in motor
stereotypy (upper three panels) and vocal stereotypy (center three panels) during the rst, second, and third components of the no-interaction (NI) and response interruption
and redirection (RIRD) sequences. Number of times we
implemented RIRD across sessions during the second
772
100
NI
RIRD
NI
RIRD
NI
RIRD
NI
RIRD
NI
RIRD
NI
RIRD
90
80
70
60
50
40
30
20
10
0
1
10
11
12
Sessions
100
NI
RIRD
NI
RIRD
NI
RIRD
NI
RIRD
NI
RIRD
NI
RIRD
90
80
70
60
50
40
30
20
10
0
10
11
12
Sessions
Fig. 28.8 Within-sequence analysis showing the percentage of time Emmett engaged in motor stereotypy (upper
panel) and vocal stereotypy (lower panel) across the rst,
second, and third components of no-interaction (NI) and
response interruption and redirection (RIRD) sequences.
Conclusions
immediate and subsequent effects of those interventions, treatment for motor and vocal stereotypy displayed by individuals with intellectual
disabilities should continue to evolve. For example, future studies should evaluate the effects of
Although this chapter outlines several empirically supported behavioral interventions, as well
as a recent methodology for evaluating the
28 Stereotypy
specic combinations of antecedent and consequence interventions on immediate and subsequent engagement in targeted and nontargeted
forms of stereotypy.
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29
William R. Lindsay
Introduction
Since the inception of services for people with
intellectual and developmental disabilities (IDD),
two theoretical and practical positions have dominated views and provision for those who exhibit
inappropriate sexual behavior. These two perspectives lead to a number of day-to-day difculties
and may cause arguments among staff members.
The two perspectives cut across all aspects of sexuality in this client group and inuence every level
of service provision including sex education, the
support of relationships including sexual relationships, and extending to ways in which we deal
with inappropriate sexual behavior and sexual
offending. They can be caricatured with the rst
being typied by the view that people with IDD
are so naive that they cannot be considered competent in a sexual relationship and they cannot be
held responsible if they commit inappropriate sexual behavior (ISB). This position was commonly
seen when services were introducing sex education for people with IDD during the 1980s. Staff
would comment that those individuals never
thought about sexual relationships and we were
W.R. Lindsay (*)
Danshell Healthcare, 119 Americanmuir Rd., Dundee
DD3 9AG, Scotland, UK
University of West of Scotland (UWS), UK
e-mail: bill.lindsay@danshell.co.uk
781
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W.R. Lindsay
occasions when even the most vigilant and conscientious of staffs are tired or distracted and attention wanders. There are also likely to be personality
differences among staffs that reect the two basic
positions noted above with some staffs feeling that
all the intrusive supervision is both inappropriate
and unethical. Consistency is very difcult if not
impossible to achieve. Therefore, they concluded
that treatment is likely to be the safest as well as
the most ethical option in the longer term.
783
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than the average scores for the other groups indicating signicant differences in the cognitive
framework held by sex offenders with IDD when
compared to others. This suggests that the individuals attitudes towards potential victims are
likely to play a signicant role in both the perpetration of an offence and the post-offence justication in these individuals.
In summary, there is not yet a strong body of
research indicating that there are factors associated with sexual offending in men with
IDD. Research investigating aetiological factors
has produced only weak associations between
childhood factors, including sexual abuse and
childhood behavioral problems, and sexual
offending in adulthood. There is more robust evidence regarding differences between adult sexual
offenders with IDD and other types of offenders
with IDD. Adult sexual offenders have been
assessed as being less impulsive, less aggressive,
and less anxious than other types of offenders.
They have also been found to abuse substances to
a lesser extent. The evidence on whether or not
sexual offending is featured more frequently in
men with IDD remains unclear.
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manual described methods for dealing with cognitive distortions, offending patterns and routines, decits in sexual knowledge, poor victim
empathy, and inadequate relationship skills in
addition to sections guiding therapists through
disclosure exercises. They found that sexual
knowledge, victim empathy, and cognitive distortions improved signicantly following treatment,
but that only improvements in sexual knowledge
and reduced cognitive distortions maintained at
the 6-month follow-up. They also reported that
8.7 % of their sample reoffended after the treatment program. Two incidents were of sexual
touching (outside clothing) and the rest were
non-contact offences (public masturbation and
stalking). Separately, Murphy and Sinclair (2006)
have reported that although this study was
designed as a treatment-controlled trial, it proved
difcult to recruit and retain control participants.
Lindsay, Steele, Smith, Quinn, and Allan
(2006) published a similarly comprehensive
report. The sample in the community forensic
IDD service consisted of 247 consecutive referrals of whom 121 were referred for sexual offending or inappropriate sexual behavior, 105 were
referred for other types of offending such as
assault or alcohol-related offences, and 21 were
women, of whom 5 were referred for sexual
offences (prostitution). The sex offender cohorts
were signicantly older than the other offenders,
but there was no signicant difference between
the groups on IQ. All sex offenders were treated
using the CBT and relapse prevention program
reported by Lindsay (2009). The follow-up
period in the Lindsay and Michie et al. (2006)
and Lindsay and Steele et al. (2006) study was up
to 13 years and reoffending rates were higher at
23.9 % for the sex offender cohort in comparison
to the 10.7 % reoffending reported by McGrath
et al. (2007). Lindsay et al. (2013) have reported
a further 20-year follow-up of 156 sexual offenders, 126 nonsexual male offenders, and 27 female
offenders. All received at least 4-week assessment and appropriate treatment directed at their
criminogenic need (deviant sexuality, anger,
alcohol-related treatment). All but 15 participants
continued to have unrestricted access to the community throughout the follow-up period. Sixteen
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798
ers with IDD and there are norms for each individual section. The responses to items by each
individual can then be compared to the average
scores for sex offenders with IDD in each section. Russells scores can be seen in Table 29.1
and his responses were elevated, indicating that
he endorsed a number of cognitive distortions
consistent with sexual offences, in the areas of
rape and attitudes to women, exhibitionism, voyeurism, stalking, and dating abuse at both assessments prior to commencement of treatment. He
endorsed fewer items, relative to the standardization groups, in the areas of sexual offences
against men and offences against children. This
effect has been noted previously with larger numbers of sex offenders with IDD. Lindsay and
Michie et al. (2006) studied 54 sex offenders with
IDD in three categories: offenders against
women, offenders against children, and exhibitionists. They found that offenders against
women scored signicantly higher on the rape
scale and lower on the offences against children
scale than offenders against children. These differences had medium to large effect sizes suggesting that it is a reliable effect. These nding
are reected in Russells responses but the main
aspect of the prole is that his scores were either
consistent with or in excess of the mean for sex
offenders with IDD in the other categories.
His understanding and knowledge of sexuality
were also assessed using the Assessment of
Sexual Knowledge (ASK: Galea, Butler, Iacono,
& Leighton, 2004). His sexual knowledge was
reasonable in the sections on parts of the body,
puberty, masturbation, adolescent sexual development, and sexual intercourse. His understanding was a good deal poorer in sexual health,
sexually transmitted disease, safe sexual practices, legal issues, contraception, menstruation,
and interpersonal relationships. Michie, Lindsay,
Martin, and Grieve (2006) compared sexual
knowledge in groups of sexual offenders and
nonsexual offenders (both with IDD) and found
that the sexual offenders had a greater level of
sexual knowledge. This nding has emerged
from other studies (Lockhart, Guerin, Shanahan,
& Coyle, 2010; Lunsky, Frijters, Grifths,
Watson, & Williston, 2007) and Lockhart et al.
W.R. Lindsay
(2010) concluded: in relation to sexual knowledge, the current study did not uphold the hypothesis that individuals with sexualized challenging
behavior would have the lowest levels of sexual
knowledge (p. 27).
All of these studies (Lockhart et al., 2010;
Lunsky et al., 2007; Michie et al., 2006) were
assessing the counterfeit deviance hypothesis. To
recap, the counterfeit deviance hypothesis suggests that men with IDD may commit ISB
because of a lack of understanding of appropriate
sexuality, appropriate interpersonal relationships,
the laws and conventions of society, and sexual
knowledge rather than being driven by sexual
deviance or a wish to commit sexual offences. All
of these authors felt that the fact that sex offenders with IDD had greater levels of sexual knowledge when compared to controls was inconsistent
with counterfeit deviance. However, the fact that
sex offenders with IDD had greater levels of sexual knowledge compared to other individuals
with IDD does not mean that their sexual knowledge is adequate. Indeed, their sexual knowledge
remains particularly poor in relation to the general population (Grifths & Lunsky, 2003;
Lindsay et al., 1992). Therefore, while their
knowledge of sexuality may be better than others
with IDD, it is still signicantly poorer resulting
in an inadequate understanding of the extent to
which it is against the laws of society.
This effect can be seen with Russell in that his
understanding of interpersonal relationships,
social interaction, and safe sexual practices was
particularly inadequate. These gaps in his sexual
knowledge were likely to interact with his perception and attitudes towards women that
emerged from his responses to the QACSO. His
inadequate understanding of interpersonal relationships and appropriate social interaction
would combine with attitudes such as women
make too much fuss about sexual assault; if a
woman is wearing a short skirt she wants men to
follow her; women like men to stare at their
bodies; and ashing at a woman is a good way
to show her you want to have sex. In this way,
there is an interaction between counterfeit deviance and attitudes consistent with sexual offending and the available research contributes to both
Pretreat 1
9
6
5
8
6
1
2
5
Pretreat 2
9
7
5
9
6
1
3
5
6 months
5
5
2
4
3
0
1
4
12 months
2
4
2
4
3
0
0
3
18 months
3
4
2
3
2
0
0
4
24 months
2
4
2
0
1
0
0
3
30 months
2
2
2
1
1
0
0
3
36 months
2
2
2
0
1
0
0
3
48 months
2
1
2
0
1
0
0
4
Measures were taken on two occasions prior to the comments of treatment and thereafter every 6 months until 3 years after referral and then again 4 years after referral
Scale
Rape
Voyeurism
Exhibitionism
Stalking
Dating abuse
Offences against men
Offences against children
Social desirability
Table 29.1 The repeated measures for Russell on the Questionnaire Consistent with Attitudes on Sexual Offending
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W.R. Lindsay
All of these features emerged from his disclosure account and can be used through treatment.
One very good example is the use of covert sensitization to promote self-restraint in relation to
his ISB. During the group session, Russell was
asked to imagine himself following a woman in a
local park. At rst, he was extremely embarrassed about doing this and was reluctant to
engage. However, after encouragement from
facilitators and other group members, he was
able to do it. Therapists asked him to describe the
woman in terms of hair color, what she was wearing, and where she was going. They asked him to
imagine himself becoming sexually aroused
while he was doing it. Once satised that he was
able to imagine the situation, the therapists told
him to imagine that a man had seen him becoming sexually aroused and following this woman.
The man grabbed him, restrained him, swore at
him, and called the police. From his behavior
during the imaginal session, Russell was obviously uncomfortable with his covert images. In
fact, other group members were able to be much
more explicit in describing possible consequences for Russell and then a therapist may
have been as the facilitator.
Some of the other group members had experience of being in the police station and were able
to ask Russell to imagine certain circumstances
while he was in the cells. Other group members
asked Russell to imagine a more robust and
aggressive response from the man who had seen
him and apprehended him. While this might
seem ethically questionable, it is probably realistic. In any sex offender group, individual members will have acute experiences of vigilante
activity in relation to their sexual behavior. Some
group members might say quite explicitly people hate sex offenders, because that is precisely
what they had experienced themselves. For some,
their family members had been attacked and for
others their houses had been spray-painted with
words such as pervert or beast. Therefore,
these individuals have a much better rsthand
experience of the public reaction to inappropriate
sexual behavior and sexual offending than facilitators and they are able to use these experiences
during covert sensitization sessions.
803
804
Conclusion
Without research in the eld of sex offenders
with IDD, it is not overly dramatic to suggest that
we would not know what to do with these cases.
It would be fairly obvious to provide sex education for sex offenders with IDD, but methods for
challenging cognitions, methods for covert sensitization, methods for increasing victim awareness, the importance of establishing and
maintaining pro-social relationships, and the way
in which we can use information on the experience of childhood abuse would not have been
incorporated into treatment.
The research on assessment has also provided
a rich range of choices that can be employed in
the evaluation of treatment. These include assessments for sexual knowledge, assessments for attitudes consistent with offending, assessments of
emotion, as well as the more familiar methods of
observation and behavior recording. In fact,
W.R. Lindsay
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Sleep Disorders
30
Introduction
Sleep is essential for human survival. Problems
with sleep can impact daily functioning and
quality of life. According to the Centers for
Disease Control and Prevention (2015), over
25 % of the general population in the USA
indicated they did not obtain enough sleep.
Sleep requirements vary among individuals
and typically changes with age. The hours of
sleep needed tends to decrease with age. The
National Institutes of Health (2015) has recommended daily 1618 h for newborns, 1112
for preschoolers, 10 h of sleep for school-aged
children, 910 h for teenagers, and 78 h for
adults. Sleep problems were noted to be fairly
809
810
30
Sleep Disorders
with sleep disruptions. The majority of measurement techniques to monitor sleep problems were
subjective. Methods of obtaining data included
sleep diaries, logs, observations, questionnaires,
and some objective measures (e.g., actigraphy,
polysomnography). Over half of the studies reported
case study or single-case designs and employed
multicomponent strategies. Approximately 74.4 %
of research articles reviewed utilized behavioral
approaches. Almost all of the behavior techniques
used with children typically developing have
been successfully implemented with individuals
with intellectual and developmental disabilities.
Spruyt and Curfs (2015) recommended that sleep
ecology, sleep hygiene, sleep regularity, and daytime somnolence be addressed to optimize sleep.
More objective measures and randomized controlled trials were also recommended. Based on
the review of articles addressing sleep problems
in children by Spruyt and Curfs (2015), more
research appears to have been conducted with
children than adults. According to Ram,
Seirawan, Kumar, and Clark (2010), the majority
of research on sleep problems concerns children
and adolescents.
811
812
30
Sleep Disorders
behavior and sleep patterns at night. They monitored sleep (i.e., in 15 min intervals) and behavior
data for 20 adult female residents. Approximately
95 % of participants were prescribed psychotropic
medication. For 4 months, nighttime sleep was
observed every 15 min from 10:45 pm to 6:15 am
and daytime behavior data collected from 6:15 am
to 10:45 pm. A sleep efciency index was determined by dividing the total time sleeping by the
total duration of time in the bed multiplied by 100.
Problem behaviors mainly consisted of aggression
toward self, others, and property, and screaming.
A relationship between sleep disturbances and
severe behavior problems was shown to exist.
Lundqvist (2013) gathered information in
Sweden on 915 adults with intellectual and developmental disabilities using the Behavior
Problems Inventory (Rojahn, Matson, Lott,
Esbensen, & Smalls, 2001). Based on the information collected, 12 % were noted to have sleep
problems, the mean length of sleep was 7.9 h, and
behavior problems were correlated with sleep
duration and disturbances. Adults reported to display behavior problems averaged about
2030 min less in sleep duration per night.
813
814
Evidence-Based Interventions
for Adults
Interventions to treat sleep disorders with adults
with intellectual and developmental disabilities
are often not based on a functional analysis of
behavior, do not employ well-controlled experimental designs, and lack interobserver agreement. Of the studies reviewed by van de Wouw
et al. (2012), most were case studies, and some
evidence supported interventions employed to
improve sleep in adults with intellectual and
developmental disabilities. The main interventions reported included behavior therapy (multicomponent), cognitive behavior therapy, light
therapy, and melatonin. Of the articles evaluated
by van de Wouw et al. (2012), two employed
multiple subjects (Gunning & Espie, 2003;
Hylkema & Vlaskamp, 2009). Gunning and
Espie (2003) had nine participants and used a
multiple-baseline design across subjects.
Effective intervention components included cognitive behavior therapy, extinction, light therapy,
optimal scheduling, relaxation, stimulus control,
sleep hygiene, and behavior management to
decrease nighttime challenging behavior and
nocturnal obsessional rituals. The treatment
component selected was based on the sleep
problems assessed. Hylkema and Vlaskamp
(2009) had 34 participants. They implemented
sleep scheduling based on age, changed daytime routines, and increased physical activities
30
Sleep Disorders
815
816
Evidence-Based Interventions
for Children
Cortesi, Giannotti, Ivanenko, and Johnson (2010)
suggested that melatonin may be effective in
decreasing sleep onset latency and waking after
sleep onset, as well as increasing total sleep time,
in children with ASD. Andersen, Kaczmarska,
McGrew, and Malow (2008) found melatonin
therapy to be effective in treating sleep onset
insomnia and sleep maintenance insomnia in
many children with ASD. However, the authors
reported a need for more controlled studies on the
efcacy and safety of melatonin. Braam et al.s
(2009) meta-analysis supported the efcacy of
melatonin as an intervention in treating sleep
problems in individuals with intellectual and
developmental disability. Similarly, Rossignol
and Frye (2011) conducted a meta-analysis of
melatonin usage for sleep problems in children
with ASD. They suggested that melatonin may
be a promising treatment, but further controlled
research was warranted.
Wiggs and Stores (2001) reported a behavioral
program that included a functional assessment of
the sleep problem, tailored with a choice of
extinction, graduated extinction, stimulus control, and positive reinforcement, and reduced settling and waking problems in an experimental
group of 15 children compared to a control group
of another 15 children with severe intellectual
disabilities. Social validity measures were different for mothers and fathers as well as objective
and subjective data on the childrens sleep over
time.
Extinction was found to be the only behavioral technique that provided sufcient treatment
efcacy to be effective in children with autism
that evidenced sleep problems (Schreck, 2001).
Bedtime routines, stimulus fading, and faded
bedtimes were considered promising, but lacking
sufcient empirical support. Similarly, Mindell,
Kuhn, Lewin, Meltzer, and Sadeh (2006) reported
30
Sleep Disorders
817
818
30
Sleep Disorders
819
Conclusion
Sleep disorders have been reported to be a problem with children and adults with intellectual and
developmental disabilities. Sleep disturbances
not only impact the behavior of the child or adult
but may also place a burden on the parents or
caregiver. Interventions for children have been
studied more compared to adults. The majority of
research with adults has been with case studies.
Various factors have been associated with sleep
disorders in adults such as prescription of psychotropic medication, challenging behavior
problems, respiratory disease, psychiatric disorders, and visual impairment. Based on reviews
conducted, melatonin, bedtime fading, and
extinction were the only strategies reported to be
evidence-based treatments of sleep disorders for
individuals with intellectual disabilities. Clearly,
more research is needed to provide effective
evidenced-based interventions to address sleep
disorders displayed by persons with intellectual
disabilities.
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Communication
31
Enhancing the communication skills of individuals with intellectual disabilities is a major intervention priority. Brown and Percy (2007) noted
that provision of formal intervention to address
communication decits, and other impairments
of adaptive behavior functioning, has been particularly important to people with intellectual
and developmental disabilities (p. 342). In line
with this comment, Sigafoos, Drasgow, and
Schlosser (2003) argued that many individuals
with intellectual and related developmental disabilities are likely to require explicit, and often
intensive, intervention if they are to develop
effective communication skills.
Parents also prioritize communication intervention for their children with intellectual and
other developmental disabilities. Radstaake et al.
(2014), for example, surveyed 77 parents of children with Angelman syndrome, a genetic condition associated with severe intellectual disability.
Parents rated the extent to which providing the
child with intervention to develop various skills
(e.g., communication, self-care, vocational, and
social skills) was a priority. Parents ranked communication skills (e.g., teaching the child to
express wants and needs, labeling objects, and
greeting people by name) among their top intervention priorities. Parents have expressed similar
priorities for their children with autism spectrum
disorder (Pituch et al., 2011), cri-du-chat
syndrome (Pituch, Green, Didden, Whittle, et al.,
N.N. Singh
Medical College of Georgia,
Augusta University, Augusta,
GA, USA
G.E. Lancioni
Department of Neuroscience and Sense Organs,
University of Bari, Bari, Italy
R. Didden
Behavioural Science Institute, Radboud University
Nijmegen, Nijmegen, The Netherlands
M.F. OReilly
Department of Special Education, The University
of Texas at Austin, Austin, TX, USA
P.B. Marschik
Institute of Physiology, Research Unit
iDN-interdisciplinary Developmental Neuroscience,
Center for Physiological Medicine, Medical
University of Graz, Graz, Austria
Introduction
R. Lang
Clinic for Autism Research Evaluation and Support,
Texas State UniversitySan Marcos,
San Marcos, TX, USA
823
J. Sigafoos et al.
824
empirically supported procedures for the assessment and treatment of communication decits/
disorders in people with intellectual disability. In
the next section, we review a number of relevant
epidemiological issues, specically the prevalence and nature of the communication problems
experienced by people with intellectual disabilities. This overview of epidemiological issues is
intended to highlight key ndings regarding the
nature and prevalence of communication disorders among individuals with intellectual disabilities. This overview will set the stage for our
subsequent review of empirically supported
assessment and intervention procedures. The
nal section of the chapter provides guidelines
for translating research evidence to practice.
Epidemiology
Types of Communication Impairment
Schlosser et al. (2007) delineated a range of
speech, language, and communication impairments that are commonly associated with intellectual disability. In this context, speech refers to a
learned system of oral communication that
requires coordinated use of voice, articulation,
and language skills (Schlosser et al., 2007,
p. 384). Language, in contrast, refers to the systematic code through which one communicates.
Communication is a more general term that refers
to the sending and receiving of messages.
Communication can involve vocalizations, spoken
language, or use of nonvocal and non-speech
modes, such as use of formal and informal gestures, manual signs, exchanging picture cards, and
pointing to symbols/objects (Schindler, Ruoppolo,
& Barillari, 2010). For the purpose of this chapter,
the terms communication delay, disorder, or
impairment will be used to cover the range of
speech and language problems associated with
intellectual disability, unless we are describing a
specic type of speech or language disorder.
Speech disorders include articulation problems,
poor voice quality, dysuencies (e.g., stuttering
and cluttering), and inadequate speech production
(e.g., failing to initiate speech). Language impair-
31
Communication
ments include delays and deciencies in the receptive (i.e., the understanding of speech) and
expressive domains (e.g., limited vocabulary size,
improper use of words, age-inappropriate grammar; Schlosser et al., 2007). Communication
impairment can range from delayed development
of early communication (e.g., joint attention) to
severe communication impairment. The latter
term refers to a situation where the person has not
developed any appreciable amount of speech or
language and presents with no formal or appropriate mode of communication. In the absence of an
appropriate alternative to speech, individuals often
rely on idiosyncratic gestures, facial expressions,
vocalizations, and body movements to communicate (Bartl-Pokorny et al., 2013; Brady, Marquis,
Fleming, & McLean, 2004; Calandrella & Wilcox,
2000; Didden et al., 2009, 2010; Marschik, BartlPokorny, Sigafoos, et al., 2014; Marschik, BartlPokorny, Tager-Flushberg, et al., 2014; Sigafoos,
Woodyatt, Keen, et al., 2000; Sigafoos, Woodyatt,
Tucker, Roberts-Pennell, & Pittendreigh, 2000).
This can be a problem because these types of [prelinguistic] communication behaviors are often difcult for others to interpret (Sigafoos, Arthur-Kelly,
& Buttereld, 2006). Reliance on such behaviors
may be appropriate for young children, but after
the child reaches school age, continued reliance on
prelinguistic behavior could be socially stigmatizing and would seem likely to impede educational
progress. The difculty of interpreting such prelinguistic acts has also been linked to an increased
risk of communication breakdowns (failure to
communicate), which can in turn socially isolate
the individual and provoke problem behavior,
such as tantrums, aggression, and self-injury
(Brady & Halle, 2002; Brady, Steeples, & Fleming,
2005; Sigafoos et al., 2004).
Etiology
The types of speech, language, and communication disorders delineated by Schlosser et al.
(2007) can arise from various causes, including
hearing impairment, oral-motor deformities,
oral-motor muscular problems, and neurological
decits. For some individuals, communication
825
Prevalence
An important area of epidemiology research aims
to estimate the prevalence of the various types of
speech and language disorders associated with
intellectual disabilities. Information of this type
can be useful for diagnosis, prognosis, searching
for etiology, and intervention planning (Enderby
& Philipp, 1986; Marschik, Einspieler, Sigafoos,
Enzinger, & Blte, 2014). To these ends, several
studies have provided data on the prevalence of
communication disorders among individuals
with intellectual disabilities (e.g., Enderby &
Philipp, 1986; McQueen, Spence, Garner,
Pereira, & Winsor, 1987; PinboroughZimmerman, Sattereld, Miller, Hossain, &
McMahon, 2007). Enderby and Philipp (1986),
for example, searched several literature sources
with the aim of identifying the prevalence of
communication disorders among various populations, including individuals with intellectual disability. Their literature search included a
systematic review of Medlars and Index Medicus,
as well as reviews of major speech therapy texts
and census surveys. The results suggested that
approximately 50 % of children with intellectual
disability (IQ < 70) were estimated to have severe
speech/language impairment. Severe in this context meant that the child had difculty in making
himself/herself understood by unfamiliar listeners. This estimate must be interpreted with caution, however, because the review did not
consider literature on preschool or adult populations. In addition, the severity of intellectual disability in the literature reviewed ranged from
826
mild to severe. The inclusion of this wide severity range could have resulted in a skewed prevalence gure because, as noted later, there are
differences in the nature and prevalence of communication disorders for individuals with mild/
moderate versus severe/profound intellectual disability. Still, this estimate suggests that a signicant percentage of school-aged children with
intellectual disability will likely require assessment and intervention to address their associated
(and often severe) communication impairments.
In another relevant study, McQueen et al.
(1987) focused on 7- to 10-year-old children with
IQs less than 55. From a cohort of 307 such children, the authors found that 65 % had severe
communication impairment (i.e., limited or no
intelligible speech). The 65 % gure reported by
McQueen et al. (1987) made communication
impairment among the top three associated disorders. The other most commonly associated conditions were behavior disorder and epilepsy.
Pinborough-Zimmerman et al. (2007) provided
another prevalence estimate on communication
impairment for a cohort of 26,315 children. The
children were living in Utah and all had been born
in 1994. The children were 8 years of age when
surveyed. Criteria for having a communication disorder were derived from special education classications and diagnostic codes from the International
Classication of Diseases, Ninth Revision, Clinical
Modication (ICD09-CM; World Health
Organization, 1997). Diagnoses, by qualied professionals, included (a) developmental speech and
language disorder, (b) expressive language disorder, and (c) mixed receptive-expressive language
disorder. The ndings revealed that 1667 children
met the criteria for communication disorder, making for an overall prevalence of 6.3 %. Signicantly
more boys than girls (8:1) had communication disorder. Of these 1667 children, 4 % also had intellectual disability (IQ of 70 or less) and another
3.7 % had autism spectrum disorder. These ndings suggest that a substantial proportion of the
population with a communication disorder will be
comprised of individuals with intellectual disability and/or autism spectrum disorder. This nding is
consistent with studies showing signicant correlations between speech/language skills and severity
J. Sigafoos et al.
of intellectual disability and autism symptomatology (Lang, Regester, Rispoli, Pimentel, &
Carmargo, 2010). That is, speech/language impairment increases with severity of intellectual disability/autism (Law, Boyle, Harris, Harkness, & Nye,
2000; Matson, Kozlowski, & Matson, 2012).
Overall, the studies by Enderby and Philipp
(1986), McQueen et al. (1987), and PinboroughZimmerman et al. (2007) suggest that communication impairment is prevalent among individuals
with intellectual disabilities. However, varying
prevalence estimates have been reported across
studies. The differing prevalence estimates are
likely due to differences in the size and composition of the samples studied. In addition, the varied ndings could suggest that the prevalence,
type, and severity of comorbid communication
disorder vary in relation to severity and etiology
of the primary disability.
Communication Impairment
in Relation to Severity of Intellectual
Disability
Mild and moderate intellectual disability. With
respect to severity of intellectual disability,
Sigafoos, OReilly, and Green (2007) described
the general communication proles and impairments of individuals with mild and moderate intellectual disability. They noted that such individuals
would be expected to develop sufcient speech
and language to meet their everyday communication needs, although their language development is
often signicantly delayed and there may be
speech disorders (e.g., articulation and/or uency
problems). Common areas of delay include (a)
slower emergence of multi-word utterances, (b)
persistence of immature grammatical forms, and
(c) problems in learning conversational turn taking. Generally, children with mild and moderate
intellectual disability achieve speech and language
developmental milestones at a later age than their
typically developing peers and their trajectory of
achievement will be lower and less consistent.
In terms of prevalence of communication disorders among individuals with mild and moderate intellectual disability, David et al. (2013)
31
Communication
827
828
Communication Impairment
in Relation to Etiology of Intellectual
Disability
In relation to etiology of intellectual disability,
there is some evidence to suggest the presence of
syndrome-specic communicative proles. For
example, Duker, van Driel, and van de Bercken
(2002) examined the communication skills of
individuals with Angelman syndrome, Down
syndrome, and pervasive development disorder
to determine if these conditions were associated
with distinct communication proles. The study
involved 26 individuals with Angelman syndrome, 26 individuals with Down syndrome, and
25 individuals with pervasive development disorder. The 77 participants ranged from 3.2 to
52.2 years of age. Communication skills were
assessed using the Verbal Behavior Assessment
Scale (VerBAS; Duker et al., 2002), which
includes 15 items related to functional (expressive) communication skills, such as requesting,
naming, and rejecting. The VerBAS is unique in
that it considers speech, as well as alternative
modes of communication (e.g., gestures and
picture-based systems). The results suggested
that there were distinct communication proles
for the three syndromes. Specically, Angelman
syndrome was associated with better requesting/
rejecting skills relative to naming skills. Down
syndrome, in contrast, was associated with relatively better naming and imitation compared to
requesting/rejecting. The communication prole
associated with pervasive development disorder
was similar to Down syndrome.
Consistent with the ndings of Duker et al.
(2002), Martin, Losh, Estigarribia, Sideris, and
Roberts (2013) compared the language skills of
boys with fragile X versus Down syndrome. They
found differing communication proles across
these two groups. Specically, boys with fragile
X syndrome scored higher on the syntactic and
pragmatic aspects of language than boys with
Down syndrome. In a similar vein, Marschik and
J. Sigafoos et al.
31
Communication
Communication Assessment
Assessment of communication skills and decits
is integral to evidence-based communication intervention (Cole, Dale, & Thai, 1996; Matson, 2004,
2007). Reliable and valid assessment data provide
objective evidence for decision making, such as
deciding whether there is a need for intervention
and, if so, what specic type of intervention might
be indicated. Two specic aims of communication
assessment include (a) documenting the persons
current level of communicative functioning, and
(b) identifying the nature and severity of any presenting speech, language, and communication
delays/impairments. A comprehensive assessment
should aim to document existing prelinguistic
behavior, receptive language skills, expressive
speech, literacy/written communication abilities,
and a range of related abilities, such as vision,
hearing, and motor skills (American SpeechLanguage-Hearing Association, 2005; Cole et al.,
1996; Dowden & Cook, 2012).
Data from a reliable and valid assessment of
communication can be useful for several pur-
829
830
Receptive-Expressive Emergent
Language Test
One communication-specic assessment instrument that could be used to supplement a more
general assessment of adaptive behavior func-
J. Sigafoos et al.
tioning is the second edition of the ReceptiveExpressive Emergent Language Test (REEL-2;
Bzoch & League, 1991). The REEL-2 is intended
to assess a persons level of receptive and expressive language development as well as identify
specic receptive and expressive language skills
that are either present, emerging, or absent from
the persons communicative repertoire. The
instrument has a receptive and expressive subscale, with 66 items each. These items reference
communication milestones from birth to 36
months of age, so the REEL-2 is suited to assessing early communication skills and development.
For each item, informants indicate if the persons
performance/skill is typical of the person, emerging or partly exhibited, or never observed. Ratings
are converted into age equivalency scores, which
can be used to compare a persons communication development to that of typically developing
infants and young children.
Sigafoos and Pennell (1995) used the REEL-2
to assess 16 preschool children with varying diagnoses (e.g., autism, Down syndrome, developmental delay). The sample consisted of 11 boys
and 5 girls ranging from 33 to 55 months of age
(mean age = 45.8 months). Parents and teachers
independently rated the 132 items for each child
and the resulting scores were compared to assess
parent-teacher agreement. The results showed no
signicant differences between parent and teacher
ratings on the expressive subscale items, but signicant differences on the receptive subscale.
Overall agreement was 31 % and 56 % for the
receptive and expressive subscales, respectively.
The results suggested that receptive language
skills are more difcult to reliably assess than
expressive skills and that assessment results might
vary across informants and settings (i.e., home
versus school). These ndings should be interpreted with caution, however, because the study
had a relatively small and diagnostically heterogeneous sample. Still, there were numerous
instances for each child where parents and teachers agreed that a skill was either absent or emerging, which would seem most important for
intervention planning. In such cases, a logical
starting point for intervention would be to teach
absent skills and strengthen emerging skills.
31
Communication
Inventory of Potential
Communicative Acts
A potential limitation of standardized measures,
such as the REEL-2, is that they tend to reference
only the major milestones of [typical] communication development. This could be a problem for
individuals with severe communication impairment. Such individuals often present with atypical, idiosyncratic, and prelinguistic behaviors
that may not be referenced in standardized measures. Identifying such behaviors is important
however, because they could be developed into
an effective means of communication with intervention (Sigafoos et al., 2006; Wetherby, Warren,
& Reichle, 1998). Undertaking an assessment to
identify any such potential communication acts
would therefore seem important. Such an assessment would be considered especially important
when standardized assessment data indicate that
the person has limited communication skills and
is functioning at a level commensurate with the
early, prelinguistic/pre-intentional stage of communication development (Reichle, Beukelman,
& Light, 2002; Stephenson & Linfoot, 1996).
To this end, Sigafoos, Woodyatt, and Keen
et al. (2000) developed the Inventory of Potential
Communicative Acts (IPCA). The IPCA is a
structured interview protocol for use with informants who are familiar with the person.
Informants are asked to describe any behaviors
that the person uses for communicative purposes.
A range of behaviors (e.g., vocalizations, body
movement, facial expression, visual orienting,
breathing pattern, problem behavior, and sign/
gestures) and functions (e.g., attention seeking,
rejecting/protesting, requesting, commenting,
and social convention) are considered. To assess
skills related to requesting an object, for example, informants are asked to describe how the person indicates that he/she wants something, such
as a toy or snack.
Several studies have used the IPCA to gather
descriptive information on the communicative
forms and functions of individuals with intellectual and other developmental disabilities (BartlPokorny et al., 2013; Didden et al., 2009; Keen,
Woodyatt, & Sigafoos, 2002; Marschik, Bartl-
831
Pokorny, Sigafoos, et al., 2014; Marschik, BartlPokorny, Tager-Flushberg, et al., 2014; Sigafoos,
Woodyatt, Keen, et al. (2000); Sigafoos,
Woodyatt, Tucker, et al., 2000; Tait, Sigafoos,
Woodyatt, OReilly, & Lancioni, 2004). The
studies have focused on individuals with severe/
profound disability and severe communication
impairment and results have consistently shown
that such individuals are reported by informants
and/or have been directly observed to use varying
(and often idiosyncratic) forms to accomplish a
number of basic communicative functions, such
as requesting, commenting, and recruiting attention. In addition, results suggest that the IPCA is
valid for intervention planning.
Tait et al. (2004), for example, used the IPCA
to identify existing forms and their associated
communication functions in six children with
developmental and physical disabilities. The
assessment data were used to select emerging
communicative behaviors. For example, one
child reportedly made whining-like vocalizations to request help in reaching preferred items.
Another child was reported to make choices by
attempting to touch the preferred option.
Intervention then focused on replacing these
reportedly existing forms with more formal
communication forms (e.g., teaching the rst
child to sign HELP and teaching the second
child to touch graphic symbols representing
choice options to indicate a selection). Prior to
intervention, the children were observed to use
prelinguistic forms in contexts that suggested
that these forms were communicative. The intervention was largely successful in that the participants learned to accomplish these same
communicative functions with the new forms.
The fact that the intervention was successful
suggests that the IPCA also has good predictive
validity for intervention planning. Keen,
Sigafoos, and Woodyatt (2001) reported similar
ndings in a study that similarly linked IPCA
results to intervention. In that study, a number of
idiosyncratic communicative acts identied by
an initial IPCA assessment (e.g., staring/looking
as a greeting/hello response) were successfully
replaced by teaching children more conventional
forms (e.g., waving to say hello).
J. Sigafoos et al.
832
Imitation Training
Imitation training has been widely used to successfully develop speech in individuals with intellectual and other developmental disabilities
(Guess et al., 1968; Harris, 1975, Lovaas, 1977;
Lovaas, Koegel, Simmons, & Long, 1973; Sloane,
Johnston, & Harris, 1968). Imitation training is
based on modeling, shaping, and differential reinforcement (Duker, Didden, & Sigafoos, 2004).
A classic study in this area is that of Lovaas,
Berberich, Perloff, and Schaeffer (1966). These
researchers developed an intervention protocol
for teaching imitative speech that involved a fourstep process. The rst step aimed to increase the
frequency of vocalizations by reinforcing any and
all vocalizations made by the person. Reinforcers
included food, drinks, and social reinforcers, such
as hugs and tickling. After the participant was
engaging in more frequent vocalizations, the next
step was to introduce an imitative model for
speech (i.e., discriminative stimulus) and shift to a
differential reinforcement schedule. For this step,
the therapist would model a word or speechlike
sound (ball or ba) and reinforcement was delivered only if the participant vocalized shortly after
the model. Once the participant had learned to
make vocalizations in response to the therapists
31
Communication
833
Stimulus-Stimulus Pairing
Stimulus-stimulus pairing is another approach
for inducing vocalizations. This procedure is
based on the logic of conditioned reinforcement.
Specically, the procedure involves pairing reinforcement with a prior vocal model. The intent is
to eventually establish the childs own vocalization as an effective type of conditioned (automatic) reinforcement. The steps of the procedure
are as follows: First, the therapist must gain the
childs attention (e.g., Look at me.). Second, the
therapist makes a simple speechlike sound several times in quick succession (e.g., ba, ba, ba).
Third, while preforming Step 2, the therapist also
gives the child a highly preferred object, such a
cookie or raisin. By pairing the rst stimulus (i.e.,
ba, ba, ba) with the second stimulus (i.e., cookie
or raisin), the childs tendency to vocalize should
increase due to the mechanism of conditioned
reinforcement. That is, the childs own vocalizations will be automatically reinforcing.
Three studies have reported success in increasing the vocalizations of children with autism with
this technique (Miguel, Carr, & Michael, 2002;
Sundberg, Michael, Partington, & Sundberg,
1996; Yoon & Bennett, 2000). Despite the
reported success, the procedure and its evidence
base have some potential limitations. First, the
conditioning process has required up to 400
stimulus-stimulus pairings to increase the childrens vocalizations. Second, the number of studies and participants to date has been modest. And
third, the procedure has yet to be evaluated as a
treatment for individuals with intellectual disabilities and severe communication impairment.
Although promising, more positive outcomes
from additional research would be necessary
before the procedure could be considered empirically supported. Further, the efciency (i.e., the
time required to achieve treatment gains) could
also be questioned.
J. Sigafoos et al.
834
Dysuency Treatments
Despite the high prevalence of dysuent speech
among individuals with intellectual disabilities
(Coppens-Hofman et al., 2013), the few available
treatment studies are uncontrolled case reports
(Bray, 2001; Bray, Haselwood, & Crookson,
1995; Cooper, 1986; Harasym & Langevin, 2012;
Preus, 1990; Stanseld, Collier, & King, 2011).
Stanseld et al. (2011), for example, described the
treatment of atypical stuttering in a 23-year-old
man (Participant 1) and a 44-year-old woman
(Participant 2) with mild/moderate intellectual
disabilities. The mans stuttering was characterized by (a) restricted speech output, (b) low volume, (c) rapid speech, (d) initial sound repetition,
(e) 2 % stammer count, and (f) up to 0.5-s stammer duration. The woman had more severe stuttering, characterized by (a) whole word repetition,
(b) initial sound repetition, (c) prolongations, (d)
50 % stammer count, and (e) up to 30-s stammer
duration. A group treatment approach was implemented, during which Talking Mats technology
was used to facilitate discussion of feelings and
provide a vocabulary for discussion of cognitive,
emotional and behavioural coping strategies and
safety behaviours (p. 25). Talking Mats is an
augmentative communication device with graphic
symbols to represent words and phrases (Ferm,
Sahlin, Sundin, & Hartelius, 2010). The participants also received individual therapy, such as
encouraging longer utterances (Participant 1) and
modeling prolonged speech (Participant 2). The
authors reported that group therapy was associated with social gains, but uency improved only
for the male participant, who had less severe stuttering. Overall, this study provided inconclusive
evidence due to lack of experimental controls,
small sample, and multiple treatment components
that varied across the two participants.
In another case report, Harasym and Langevin
(2012) provided treatment to an 8-year-old girl
with Down syndrome. Her stuttering impairment
was considered profound and characterized by
part-word repetitions, silent and audible prolongations, and multisyllabic stuttering on words.
Treatment involved uency shaping and parentdelivered contingencies. Fluency shaping involved
Cues-Pause-Point
Some individuals with intellectual disabilities
engage in frequent echolalia. Echolalia refers to
repeating the words or phrases spoken by another
person. For example, when asked a question,
the person might simply repeat the question.
McMorrow and Foxx (1986) developed the cuespause-point procedure to address echolalic
responding in people with intellectual disabilities.
The procedure aims to shift stimulus control from
the therapists speech to a nonverbal stimulus.
31
Communication
Milieu Therapy
Milieu therapy is a naturalistic teaching approach
characterized by (a) providing instruction in the
natural environment, (b) arranging the natural
environment to create the need for communication, such as placing preferred items out of reach,
(c) waiting for the person to initiate communication, such as by looking at or reaching for a preferred item, (d) using mand/model/prompting
(e.g., Say____ . Say I want ____ .), and (e) natural
reinforcement (i.e., giving the person the preferred
item when he/she says I want ____ .).
835
836
J. Sigafoos et al.
31
Communication
837
J. Sigafoos et al.
838
31
Communication
839
840
J. Sigafoos et al.
31
Communication
Speech-Generating Devices
Speech-generating devices (SGDs) or voiceoutput communication aids (VOCAs) represent
another option that has been used as an alternative to speech for individuals with intellectual
841
disabilities
and
severe
communication
impairment. SGDs usually have communication
symbols (e.g., letters, words, line drawings, or
photographs) that produce corresponding digitized or synthesized speech output. Numerous
SGDs are commercially available. Three commonly used devices are shown in Fig. 31.1.
Rispoli, Franco, van der Meer, Lang, and
Camargo (2010) reviewed 35 studies aimed at
teaching SGD use to individuals with developmental disabilities. These 35 studies involved 86
participants, 70 % of who had intellectual disabilities. Participants ranged from 1 to 42 years
of age, but most were school-aged children (mean
age = 12.9 years). Across these 35 studies, 17 different types of SGDs were used. The targeted
communication skills included requesting preferred stimuli, naming/commenting, answering
questions, and social communication (e.g., greetings, and saying please and thank you). Three
main intervention approaches were employed
across these 35 studies, specically (a) discretetrial training, (b) milieu therapy, and (c) a combination of discrete-trial and milieu therapy.
Eighty-six percent of these 35 studies reported
positive outcomes (i.e., the participants learned
the targeted SGD-based communication skills).
In another relevant review, Lancioni, Sigafoos,
OReilly, and Singh (2013) summarized 54 studies that evaluated the use of SGDs in communication interventions for individuals with severe/
profound intellectual disabilities and comorbid
physical and/or sensory impairments. There were
149 participants across these 54 studies.
Participants received intervention aimed at teaching them to use SGDs to (a) request access to preferred stimuli (23 studies), (b) reject non-preferred
objects (three studies), (c) recruit social interaction/initiate conversation (22 studies), and (d)
reduce problem behavior via SGD-based functional communication training (six studies). The
intervention procedures used in these studies
were generally based on discrete-trial and milieu
therapy. Consistent with the ndings summarized
by Rispoli et al. (2010), the 54 studies reported
positive outcomes overall.
Similarly positive outcomes were found in a
review of 11 studies, in which 15 adults with intel-
842
J. Sigafoos et al.
based on ABA and delivered through a combination of discrete-trial and milieu therapy approaches.
Overall results were again largely positive.
The results of these three systematic reviews
support the use of SGDs as an evidence-based
intervention for individuals with intellectual dis-
31
Communication
843
J. Sigafoos et al.
844
of a published study may thus need to be modied to ensure that these basic principles hold
when applying FCT with new cases.
Even the best treatments do not always produce positive outcomes in all cases. Objective
data must therefore be collected on the individuals response to treatment so as to determine if
that treatment is producing sufcient improvement for that person. Such data should be collected and reviewed regularly. When the data
show insufcient progress, the treatment protocol
should be modied in light of an analysis of the
underlying cause(s) for the lack of success.
Summary
Communication impairment is prevalent among
individuals with intellectual disabilities and
enhancing the communication functioning of
individuals with intellectual disabilities is a major
intervention priority. An evidence-based practice
approach to intervention includes gathering reliable and valid assessment data. Communication
assessment aims to (a) document the persons
current level of communicative functioning, (b)
identify the nature and severity of any presenting
speech, language, and communication delays/
impairments, (c) document existing prelinguistic
behavior, and (d) assess related abilities, such as
vision, hearing, and motor skills. Assessment
data is used to determine the need for intervention, and, if so, the specic types of interventions,
that might be indicated.
Once treatment priorities have been identied
and the starting point for intervention determined, the next steps are to identify, implement,
and evaluate empirically supported (evidencebased) treatments. A range of empirically supported
treatments
for
enhancing
the
communication functioning of individuals with
intellectual disabilities have been developed as a
result of numerous interventions studies.
Clinician should identify and implement interventions that have been demonstrated to be effective in a number of high-quality research studies
involving persons with intellectual disabilities.
A four-step process has been recommended to
31
Communication
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Vocational Training
32
Introduction
Persons with intellectual and developmental
disabilities often require individualized vocational
skill training and supports to achieve the ultimate goal of obtaining competitive, communitybased employment. Numerous public agencies
and private organizations or businesses provide
important vocational services. State Vocational
Rehabilitation agencies (SVRAs) and public
schools, sometimes in conjunction, are often the
primary public agencies to provide vocational
skill training. Those who qualify for special education and related services under the Individuals
with Disabilities Education Act (IDEA) must,
no later than age 16, be provided transition services that may include the acquisition of vocational skills. SVRAs offer eligible individuals
vocational rehabilitation (VR) services, including supported employment and job placement,
through an Individual Plan for Employment
(Rehabilitation Act of 1973, as amended). A
2012 Government Accountability Ofce (GAO)
report suggested that with numerous vocational
skill-related services available, individuals with
disabilities may have difculty navigating programs, and service providers may have difculty
coordinating services across different programs.
Timely implementation of appropriate vocational
services and supports is essential to maximizing the employment potential of individuals with
disabilities.
This chapter discusses the work supports and
services available to qualied individuals with disabilities. We discuss the participation of individuals with intellectual and developmental disabilities
in the workforce, and the often-unnecessary obstacles to work that some individuals encounter. The
most relevant federal laws, their purposes, and
their work-related provisions are introduced, as
are the agencies that provide services pursuant to
those laws. The efcacy of specic vocational
interventions, particularly supported employment,
is described. Several research-backed vocational
skill programs are described to provide the reader
with real-life examples of successful vocational
programs. Finally, employer practices and preferences that lead to the employment of individuals
with disabilities are discussed.
851
852
32 Vocational Training
853
854
services, Medicaid also provides access to community services such as housing, employment
services, personnel assistant services, and many
other supports. Unfortunately, individuals are
often told that working at a specic level will lead
to termination of Medicaid benets by service
providers and family members unaware of benet
provisions that enable individuals to work for protracted periods of time without threatening their
health care coverage in any way. Misinformation
on the effects of earnings on benets and health
care is a widespread problem that impacts the pursuit of employment for individuals with intellectual disabilities.
Employer
and
community
attitudes.
Individuals with intellectual disabilities continue
to face discrimination and poor attitudes as they
attempt to access employment opportunities in
their communities. Just as service providers continue to hold misconceptions about the effects of
employment on federal benets and health care
coverage, many employers still base their hiring
practices on misconceptions regarding the potential contribution of individuals with intellectual
and developmental disabilities to the work force,
such as the following: employees with intellectual disabilities experience high rates of absenteeism; employees with intellectual disabilities
require expensive accommodations; employees
with intellectual disabilities will cause my workers compensation premiums to rise; employees
with intellectual disabilities will cause my health
insurance premiums to skyrocket; or if we hire
employees with intellectual disabilities we wont
be able to re them if it doesnt work out.
For example, in 2008 the US Department of
Labor, The Ofce of Disability Employment
Policy (ODEP), conducted a study with employers
representing a variety of industries and company
sizes, for-prot and not-for-prot, in 13 major metropolitan areas of the USA (Domzal, Houtenville,
& Sharma, 2008). Among the companies responding, approximately 19 % reported employing individuals with disabilities, while 13.6 % reported
actively recruiting people with disabilities. One of
the hiring challenges cited by 72.6 % of the
32 Vocational Training
855
856
Law
The Rehabilitation Act of 1973
857
32 Vocational Training
Law
Workforce Innovations and
Opportunity Act (2014)
Congressional purposes
(1) To increase, for individuals in the United States, particularly those
individuals with barriers to employment, access to and opportunities
for the employment, education, training, and support services they
need to succeed in the labor market
(2) To support the alignment of workforce investment, education, and
economic development systems in support of a comprehensive,
accessible, and high-quality workforce development system in the
United States
(3) To improve the quality and labor market relevance of workforce
investment, education, and economic development efforts to provide
Americas workers with the skills and credentials necessary to secure
and advance in employment with family-sustaining wages and to
provide Americas employers with the skilled workers the employers
need to succeed in a global economy
(4) To promote improvement in the structure of and delivery of services
through the US workforce development system to better address the
employment and skill needs of workers, jobseekers, and employers
(5) To increase the prosperity of workers and employers in the United
States, the economic growth of communities, regions, and states, and
the global competitiveness of the United States
(6) For purposes of subtitle A and B of title I, to provide workforce
investment activities, through statewide and local workforce
development systems, that increase the employment, retention, and
earnings of participants, and increase attainment of recognized
postsecondary credentials by participants, and as a result, improve
the quality of the workforce, reduce welfare dependency, increase
economic self-sufciency, meet the skill requirements of employers,
and enhance the productivity and competitiveness of the nation
Employment Environments
and Work Supports
Individuals with disabilities may work in any of
several types of employment environments,
including sheltered workshops and competitive
employment. While approaches to employment
should be individualized, research suggests that
some types of employment (e.g., supported
employment) are generally more effective than
others (e.g., sheltered workshops).
Sheltered Workshops
Some individuals with disabilities work in segregated environments for less than minimum wage.
The Fair Labor Standards Act of 1938, as amended
(FLSA), authorizes the DoL, in certain circumstances, to allow employers to pay individuals with
disabilities subminimum wage. The FLSA justies
858
Supported Employment
Supported employment is an extensively
research-based employment intervention for
individuals with disabilities, including mental illness, autism, intellectual disabilities, traumatic
brain injury, and developmental delay (Dowler &
Walls, 2014; Wehman, Chan, Ditchman, & Kang,
2014; Wehman, Kregel, et al., 2003; West,
Targett, Wehman, Cifu, & Davis, 2015). Wehman
and Kregel et al. (2003) and Wehman and Revell
et al. (2003) dened supported employment as
paid work occurring in integrated settings, with
the provision of ongoing support services.
Decades of substantial evidence demonstrates
that supported employment has consistently better outcomes than traditional VR approaches,
even for individuals with severe disabilities (e.g.,
Wehman et al., 1991; Wehman, Kregel, Revell, &
West, 1990). In addition, Wehman and Kregel
et al. (2003) and Wehman and Revell et al. (2003)
demonstrated that supported employment is a
cost-effective intervention.
Characteristics of supported employment.
Supported employment concentrates all the
components of vocational intervention
training, counseling, and supportat the job site
while the person is actively employed (Wehman
et al., 1991). The overarching goal of supported
employment is for an individual to achieve competitive employment at a competitive wage (at
least minimum wage) in a job that is open to the
general public (not reserved for individuals with
disabilities) in a socially integrated, communitybased setting. Essential elements of supported
employment services have been pay for real
work, integration in the workplace with nondisabled coworkers, long-term ongoing supportive
services to facilitate job retention, placement
of individuals with severe handicapping conditions, and interagency cooperation and funding
of these services (Wehman, Kregel et al., 2003;
see also Wehman, Revel et al., 2003). Supported
employment uses an assess-place-train approach
that quickly results in paid, competitive, community employment for individuals with disabilities. Individuals are supported into employment
and during employment, including facilitating
the job search, applying for a job, the job interview, and liaison support between the employee,
co-workers, and supervisors (Nicholas et al.,
2015). Supported employment can be implemented in a wide variety of service sectors,
including food service, retail, hospitality, agriculture, and hospitals (Nicholas et al., 2015; Project
Search, 20112012).
Perhaps the most well-dened and researched
method of supported employment is Individual
Placement and Support (IPS) (Drake, Bond, &
Rapp, 2006). IPS uses a vocational specialist (job
coach) to effectuate supported employment
(Wehman, Kregel et al., 2003; Wehman, Revell
et al., 2003). According to Dowler and Walls
(2014), the six tenets of the IPS model are
(1) commitment to competitive employment;
(2) eligibility based solely on client choice;
(3) rapid job search; (4) well-integrated treatment
and employment teams; (5) attention to client
preference in job search; and (6) individualized
employment support.
The Department of Labor promotes supported
employment. The US Department of Labor promotes supported employment with its Employment
First initiative, which the US DoL considers a critical priority. Employment First is a framework for
systems change that is centered on the premise that
all citizens, including individuals with signicant
disabilities, are capable of full participation in integrated employment and community life (US DoL,
n.d.). The US DoL urged publicly nanced systems
(such as SVRAs) to align policies, service
delivery practices, and reimbursement structures to
commit to integrated employment as the priority
option with respect to the use of publicly-nanced
day and employment services for youth and adults
with signicant disabilities (US DoL, n.d.).
Federal law and supported employment.
Supported employment was introduced in the late
1970s through university-based demonstration
programs and by 1990 was incorporated into federal legislation to become an integral part
of the VR program (Wehman et al., 1991). The
Workforce Innovations and Opportunity Act
(WIOA, 2014) supersedes the Workforce
Investment Act of 1998 and amends the Adult
Education and Family Literacy Act, the Wagner-
32 Vocational Training
859
860
Project SEARCH
Project SEARCH High School Transition Model.
The Project SEARCH High School Transition
Model of school-to-employment transition for
youth with signicant disabilities has received
numerous accolades and has been widely
adopted by employers in an effort to hire and
retain individuals with disabilities. In addition,
educational and workforce development agencies have supported the model as a means of providing work-based learning opportunities
leading to employment for youth with disabilities. The model is unique in that business needs
act as the impetus for employing youth with disabilities versus the responsibilities of local education and rehabilitation agencies to provide
teaching and learning experiences for transition
age youth. In providing demand-side employment services, rehabilitation professionals and
workforce development specialists provide services directly to employers and transition-aged
interns to address the employers needs for qualied employees. This model has been applied to
industries including hospitals, universities, large
banking central ofces, and government centers.
Analysis of the components of the model reveals
that it includes all ve of the categories of practice from the Taxonomy for Transition and meets
the National Standards and Quality Indicators
(Test, 2012).
Project SEARCH interns use independent
means of transportation (public or private transportation, not a school bus) to arrive directly at
the business. The work day includes approximately 1.5 h of Employability Skills curriculum
and 5 h at their internship (including lunch and
travel time to the internship sites).
Project SEARCH has high school and adult
programs. Project SEARCH high school internships are typically for individuals between the
ages of 18 and 22, though individuals in the
2330 age range can be included if funding is
available to support participants that are beyond
school eligibility. High school student interns
should be nished with their high school
credit requirements for graduation, certication,
or completion. Adult programs typically target
Program Components
Business-driven training and employment
program. The host business is responsible for
leading the development of the policies and procedures that guide the program, such as Human
Resource policies, risk management (health and
safety) procedures, quality standards and quality
assurances, internship and placement supervision
procedures, and other necessary policies, as well
as committing the staff time of a program liaison
for the classroom program component.
Support agency collaboration. The local
school district, state VR agency, and local
Community Rehabilitation Program (CRP)
all commit resources to the program. The local
school district assists with student recruitment
and stafng of the classroom-based component
of the program. The state VR agency is responsible for assessing all project participants to
determine eligibility of DRS services providing
funding to a local CRP to provide job coaching
services. The local CRP assigns site-based job
coaches to provide training and support to students throughout the internship and placement
phases of the program.
32 Vocational Training
861
862
Job Placement
Job placement services are simply services that
attempt to place individuals with disabilities in
jobs for which they are well suited. Job matches
are typically developed based on formal and
informal assessments by a job placement agency.
SVRAs offer job placement services. An individual must meet eligibility criteria to qualify for
SVRA services, but even eligible individuals are
not guaranteed services. An individual may be
placed on a services waiting list, during which
time they receive no services or supports. A referral for SVRA services can come from the individual or another person, including family,
school, and health care providers.
32 Vocational Training
Transition Services
Research repeatedly spotlights the difculty
encountered by students as they transition from
secondary to post-secondary life, particularly
employment. Planning for the transition from
school to work begins in high school (by age 16)
for all students, and can begin earlier for other
students or by individual state mandate. Despite
this focus on transition, research (e.g., Carter
et al., 2011) demonstrates that early work experiences elude many youth with severe disabilities.
Individualized education program. Eligible
students with disabilities are provided special
education and related services in accordance with
the IDEA. The IDEA requires that each eligible
student has an Individualized Education Program,
which sets forth the individualized academic and
functional goals, accommodations, services, and
educational environment of a student with a disability. The IEP is reviewed and revised at least
annually by a multidisciplinary team that includes
the students special education teacher and parents. The IDEA requires that not later than the
rst IEP to be in effect when the child turns 16, or
younger if determined appropriate by the IEP
Team, and updated annually, thereafter, the IEP
must include transition goals and services. If
transition will be discussed by the IEP team, the
student must be invited to participate in the IEP
meeting. Self-determination and self-advocacy
by the student are important aspects of transition
IEP development. If the student does not attend
the IEP team meeting, the public school must
take other steps to ensure that the IEP team considers the childs preferences and interests
(IDEA, 2004).
The foundation of IEP transition goals and
services is age-appropriate transition assessments
related to training, education, employment, and,
where appropriate, independent living skills.
Transition goals must be appropriate for the student in light of the results of transition assessments, the students preferences, and all other
relevant information. The students transition
services must be designed to assist the student in
reaching those goals. Transition services include
863
864
32 Vocational Training
Employer-Based Demand-Side
Approaches
For many years, employment training placement
programs for individuals with disabilities relied
almost exclusively on supply-side approaches,
which prepare individuals with job skills generally needed for employment. Supply-side
approaches do not focus on factors specic to
jobs that employers need to ll (Chan et al.,
2010). However, in recent years new employer
models of disability employment practices have
emerged that reect major efforts by multiple
companies to embrace individuals with intellectual disabilities as part of the workforce (Habeck,
Kregel, Head, & Yasuda, 2007).
865
866
32 Vocational Training
867
868
Table 32.2 Employment status of individuals with intellectual disabilities
Employment status
Working in competitive employment
Working in sheltered employment
Not workingseeking employment
Not in the labor force (not employed
and not looking for work)
Percentage (%)
21
13
21
45
32 Vocational Training
Conclusion
Many individuals with intellectual and developmental disabilities aspire to work, and most
would prefer to engage in competitive employment in integrated settings. This chapter described
the numerous work supports and services that are
available to qualied individuals with disabilities, and the agencies that provide those services.
Although individuals with disabilities face
obstacles to employment, those obstacles can
generally be mitigated or eliminated through
appropriate work supports and services. Among
those obstacles are low expectations and misinformation. Service providers should have and
convey high vocational expectations, and provide individuals with disabilities accurate workrelated information or refer the individual to the
correct professional or agency. In sum, individuals with intellectual and developmental disabilities should be encouraged to develop and pursue
employment goals and, especially with the
appropriate services and supports, can expect to
succeed in the workplace.
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33
Leisure Skills
Brian J. Feeney, Rebecca K. Arvans,
and W. Larry Williams
Introduction
Dening Leisure
This chapter describes a variety of issues associated with leisure and persons diagnosed with
intellectual and developmental disabilities
(IDD). Sections cover evidenced based
approaches towards assessing and establishing
leisure behavior, use of leisure behavior as therapy or in enhancement of other skill domains,
and some creative examples of treatment applications associated with both. Additional sections include a review of barriers for leisure
engagement for this population, current status
of the application of leisure technologies, as
well as related mental health and physical health
of siblings and caregivers of individuals diagnosed with IDD.
871
872
learned motivating operations, verbal community, and relational frame theory. A contextual or
functional denition of leisure activities would
account for an individual and their environmental
relations with respect to leisure activity.
According to Gilbert (2007), leisure is the
opportunity and time to complete other things
outside of occupations. In other words, engagement or selection of a leisure activity is a result of
the relationship between availability and frequency of engagement of activities for the organism. Gilbert (2007) noted that we typically view
leisure associated with regard to a time aspect,
however, opportunity for engagement is equally
important. Opportunities without time mean
nothing (p. 11). Gilbert went on to note that
time, dead on our hands, affording no opportunities, has even less value.(p. 1112). This last
statement seems to describe the overall state of
leisure for many individuals with developmental
or intellectual disabilities and also calls into
question other needed components for a functional denition of leisure, ability, and competence. If the leisure activity is not within the
individuals repertoire or at insufcient strength
to be adequately performed, it is unlikely that it
will be engaged in or that it will result in naturally reinforcing consequences. Leisure may be
dened as an activity engaged in by an individual
dependent on strength of repertoire, as well as the
time and opportunity to engage in that repertoire,
that is functionally related to that individuals
environment.
33
Leisure Skills
873
874
search results in fewer than 50 articles. An analysis of articles published in the late 1980s until
2000 reveals that the vast majority of the published literature was composed of reports from a
variety of government and human service organizations and less than a third of the articles were
from professional journals. This distribution
changes radically after 2000 to include a wide
range of philosophical, clinical, and research
articles relevant to leisure and intellectual disabilities. We have categorized much of this literature to facilitate an analysis of what is known
about leisure today in terms of the epidemiology
of leisure activities for those with IDD, related
descriptions and survey tool development, standard group comparison research using hypothetical constructs as independent or dependent
variables, barriers and single-subject controlled
studies on training of leisure skills, barriers to
leisure, direct and indirect promotion of leisure
activities, and research into different behavioral
processes associated with or underlying leisure.
By using these general categories we attempt to
empirically address the wide variety of activities
and phenomena related to leisure and IDD.
Researchers have found that the interests of individuals with IDD tend to be similar to those without disabilities (Glausier et al., 1995). Most
survey studies on leisure activities focus on
where the activities are occurring and types of
activities engaged in. For example, studies have
suggested most leisure activities fall into three
different categories: social, leisure at home, and
physical (Badia, Orgaz et al., 2013). Another way
of viewing the same activities includes consideration of activities as leisure activities at home
(e.g., cooking, sewing, watching TV), outside of
home (e.g., hiking, bowling), or involving physical exercise (e.g., jogging, tennis). These generally constitute structured (e.g., arts and crafts at a
day center) or unstructured activities (e.g., shopping, hanging out, talking on the phone) (Botuck
& Levy, 1995). Differences in engagement in leisure activities are common across different settings (Anderson et al., 1987).
33
Leisure Skills
875
Tables 1, 2, and 3 include a list of the frequently and infrequently occurring leisure
activities for individuals with IDD. The focus of
Table 1 includes commonly occurring structured
activities (i.e., those that are guided by others)
while Table 2 and Table 3 focus upon unstructured activities. In addition to the listed leisure
activities, those that individuals tend to prefer to
participate in are noted. Interestingly, many of
the activities in Table 3 are highly preferred, yet
infrequently occurring (Anderson et al., 1987;
Badia, Orgaz et al., 2013; Glausier et al., 1995).
Leisure at Home. Individuals with IDD are
more likely to engage in social activities and leisure activities at home when compared to engagement in physical activities (Badia et al., 2013).
Several survey studies have described a wide variety of activities of persons with IDD and have
noted that individuals, over time, are likely to
become more socially isolated and to engage in
leisure activities primarily in the home setting
(Glausier et al., 1995; OReilly, Lancioni, &
Kierans, 2000). In addition, they are more likely
to engage in passive leisure at home activities,
although as many as 94 % of individuals also
engage in additional types of leisure activities
(Anderson et al., 1987; Bigby, 1992). Zijlstra and
Vlaskamp (2005) reported on the weekend leisure
activities of 160 individuals with profound disabilities in residential facilities in the Netherlands.
They found that, on average, during approximately four hours of leisure activities, half of that
time was spent watching TV or listening to music.
Social Activities. Badia et al. (2013) found
that 64.9 % of those surveyed (n = 237 individuals) were likely to engage in social activities. In
Examples
Day programs
Physical
Exercise classes
Notes
Often includes training in academic skills,
work skills, self-care, arts and crafts and
recreational sports
Often includes gymnastics, swimming,
bowling, basketball, bicycling, jogging,
petanque, Ping- Pong, and soccer
Authors
Anderson et al.
(1987)
Anderson et al.
(1987) Badia
et al. (2013)
876
Home
Physical
Examples
Using phone
Birthdays
Religious
Museums
Visitinga
Shoppinga
Restaurantsa
Television
Resting
Reading
Signing
Painting
Listening to musica
Board gamesa
Walkinga
Notes
Finances tend to be a barrier for
shopping and restaurants
Authors
Anderson et al. (1987)
Badia et al. (2013)
Glausier et al. (1995)
Home
Examples
Boat rides
Sporting events
Volunteeringa
Campinga
Going on datesa
Concertsa
Picnicsa
Travelinga
Field tripsa
Taking picturesa
Dancinga
Fishinga
Home projectsa
Music
instrumentsa
Collecting itemsa
Gardeninga
Cookinga
Caring for petsa
Doing craftsa
Sewinga
Notes
Authors
Anderson
et al.
(1987)
Badia
et al.
(2013)
Females
are more
likely than
males to
do
cooking
(59 vs.
46 %)
Anderson
et al.
(1987)
Badia
et al.
(2013)
Prerequisite Skills
Evidence-Based Treatments
Observations and Comparisons
Unfortunately, there is very little research currently available regarding leisure activities specic to individuals with IDD. Many studies
33
Leisure Skills
877
878
33
Leisure Skills
Barriers to Leisure
Implementation of leisure activities for individuals with IDD may be difcult for many reasons.
Reynolds (2002) surveyed the managers of 34
residential facilities in the UK regarding the
extent that residents participated in more complex or creative leisure activities such as drama
879
880
33
Leisure Skills
881
882
33
Leisure Skills
883
Assessment of Preference
Wilson et al. (2006) found increased leisure
engagement for participants using a pairedchoice presentation of stimuli selected from a list
of potentially preferred items and activities
described earlier when having staff assess choice
of leisure activity.
Prompting Methods
Physical Prompts. Wilson et al. (2006) found
that simply offering activity options could occasion engagement in leisure activities. The authors
884
also reported that engagement with leisure activity items improved following a paired choice presentation of leisure items with a brief staff
demonstration on how to interact with the leisure
item using a least-to-most prompting hierarchy.
If the individual selected an item within three
seconds of the paired choice presentation, a brief
description and demonstration of how to use the
item was provided using a least-to-most prompting hierarchy. If the individual did not choose an
item within three seconds of the choice presentation, one of the items in the array was arbitrarily
removed, while the staff member provided a
description and demonstrated how to use the
other item, similar to the protocol mentioned
above. Many other response-prompting strategies
(e.g., video modeling, video prompting, and constant time delay) have been shown to be effective
in teaching leisure skills to individuals with IDD
such as such as accessing the internet, listening to
a Walkman, and playing games such as checkers,
UNO, and croquet (Dollar, Fredrick, Alberto, &
Luke, 2012).
Other researchers have evaluated the effectiveness of the most-to-least prompting procedure on teaching of advanced movement
exploration skills in water to children with autism
spectrum disorder (Yanardag, Erkan, Yilmaz,
Arcan, & Duzkantar, 2015) Most-to-least
prompting consists of decreasing the intrusiveness of prompts along a hierarchically from more
to less intrusive (e.g., physical, model, to verbal
prompt). This errorless teaching strategy was
used to teach advance movement exploration
skills in water, such as blowing bubbles, face submersion, and retrieving an object from the bottom of the pool. The authors found that swimming
skills maintained and generalized at follow up
sessions.
Video Modeling. Video modeling consists of
showing a video with a person performing the
task before practice. Video prompting includes
showing a video of a person performing a single
step of a task before practicing that step. Constant
time delay begins with a prompt delivered simultaneously with the instruction. Following this, the
prompt is faded along a dimension of time (e.g.,
35 s) that allows for transfer of stimulus control
to the initial instruction. Dollar et al. (2012) demonstrated the use of a simultaneous prompting
method and total-task chaining in teaching a set
of leisure skills (use of iPod, television, CD and
DVD players) to an adult with a severe intellectual disability. In simultaneous prompting, the
instruction is immediately followed by a prompt,
is never delayed, and is used until mastery of the
behavior is demonstrated on probe trials conducted prior to each instructional session.
33
Leisure Skills
885
Summary
Leisure and the wide variety of behaviors related
to leisure are of major relevance to persons diagnosed with IDD. The literature on assessing,
describing, and promoting leisure provides some
evidence-based assessments of participation and
886
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Community Living
and Participation
34
Introduction
Often when professionals and policy makers are
talking about services and supports to people
with intellectual and developmental disabilities
(IDD), community living means that a person
lives in the community and not in an institution.
This is based on a frame of reference from the
mid-1960s, when most people with intellectual
disabilities who were not living at home with
their families instead lived in large congregatecare living facilities called institutions. Most of
these were owned and operated by the state. For
the past several decades, advocacy efforts in the
USA and many other countries have resulted in a
movement of people with IDD from institutions
into community settings. Today, most people
with IDD live at home with their families and
those that live outside of their family home live in
community settings.
Today, community living means different
things to different people. While most people
agree that it does not include institutions, not
everyone agrees on what it does mean. In this
891
892
right to freedom from discrimination and unjustied isolation in institutional settings. As a result
of the Olmstead decision, there are increased
opportunities for people with IDD to transition
from nursing homes, institutions and other congregate care facilities to community living. In
2014, the Centers for Medicare and Medicaid
Services (CMS) issued a new denition of home
and community-based services (HCBS) (Final
Regulation CMS-2249-F/CMS-2296-F) which
identies what qualities must be in place for a
program to be considered home and communitybased. These include (but are not limited to) the
following (as identied in the regulation):
1. Be integrated in and provide support for full
access to the greater community, including
opportunities to seek employment and work in
competitive integrated settings, engage in
community life, control personal resources,
and receive services in the community, to the
same degree as individuals not receiving
HCBS.
2. Be selected by the individual from among
setting options including non-disability specic settings and an option for a private unit
in a residence. The setting options are identied and documented in the person-centered
service plan and are based on the individuals
needs, preferences, and, for residential settings, resources available for room and
board.
3. Ensure an individuals rights of privacy, dignity and respect, and freedom from coercion
and restraint.
4. Optimize individual initiative, autonomy, and
independence in making life choices, including but not limited to, daily activities, physical
environment, and with whom to interact.
5. Facilitate individual choice regarding services
and supports, and who provides them.
6. In a provider-owned or controlled residential
setting, the following additional conditions
must be met:
(a) The unit or dwelling is a specic physical
place that can be owned, rented, or occupied under a legally enforceable agree-
Home
Where People with Intellectual
and Developmental Disabilities Live
Several types of community and residential supports exist which are designed to support people
with IDD in developing skills necessary for community living. In the USA, residential and community supports for people with IDD are funded
primarily through Medicaid as a long-term service
and support. Principal types of residential settings
include state-operated institutional facilities,
nursing homes, Intermediate Care Facilities For
Individuals With Intellectual Disabilities (ICF/IID),
and Home and Community Based Services
(HCBS), the latter which offer options for both
in-home or out-of-home residential options.
Residential and community supports differ by
state, but similarities exist in both the type of supports provided, as well as outcomes and trends.
Substantial changes in where people with IDD
live and receive residential supports are the result
of the deinstitutionalization movement, which
began in the mid-1960s. The number of people
with IDD living in large, state operated institutions designed for people with developmental
disabilities which have 16 or more people living
in them, and in psychiatric institutions nationwide decreased by 81 % between June 1977 and
June 2012, a reduction from 154,638 to 29,221
people. Similarly, there was a 78 % decrease in
the number of people with IDD living in large
ICF/IIDs, from 207,356 in 1977 to an estimated
45,034 in 2012. However, between 1989 and
2012, there was only a 24 % decrease in the number of people with IDD living in nursing homes,
from 37,143 in 1989 to 28,064 in 2012 (Larson
et al., 2014; Larson, Ryan, Salmi, Smith, &
Wuorio, 2012; Prouty, Smith, & Lakin, 2007).
Among states, there is great variability in the utilization of congregate care facilities. While only
four states have over 25 per 100,000 of the US
population living in state-operated DD institutional settings (i.e., AR, MS, NJ, and NY), when
all large facility types are combined (stateoperated DD institutional facilities, privately
893
894
Self-Direction
As noted previously, services and supports for
individuals with IDD have undergone signicant
changes in the past 50 years. A national growing
trend called self-directed services and supports
has emerged in which individuals with disabilities and their families have the opportunity to
exercise greater control and choice in their services and supports.
Self-directed services and supports provide
individuals with IDD and their families increased
choice and opportunity to live person-centered
lives within their own local communities in which
their services and support balance what is important to the individual. Self-direction typically
Work
Employment can be seen as an essential ingredient to community living. Beyond living in the
community, work connects individuals with the
economic fabric of their communities and society
at large. Many individuals with IDD are not only
living in integrated community settings, but also
enjoying the many benets work provides.
895
896
897
898
899
(1) participant empowerment; (2) communication; (3) assessment; (4) community and service
networking; (5) facilitation of services (6) community living skills and supports; (7) education,
training and self-development; (8) advocacy; (9)
vocational, educational and career support; (10)
crisis prevention and intervention; (11) organizational (employer) participation; (12) documentation; (13) relationships and friendships; (14)
person-centered goals and objectives; (15) supporting health and wellness.
Currently, DSPs are not required to undergo
training to meet these competencies, but there is
signicant growth toward establishing competencybased training in human services and therefore
advancing the professional development of the
DSP (LaLiberte & Hewitt, 2008). Most recently,
the Centers for Medicare and Medicaid Services
(CMS) released a set of Core Competencies for
direct support workers (CMS, 2014). These identify core competencies across 12 competency areas
for direct service workers who support people with
IDD or mental health disorders, or people who
receive services due to their age.
Like many other professions that interact with
people in support or service capacities (such as
the American Medical Association and the
National Association of Social Workers), DSPs
are guided by a code of ethics. For the DSP, this
is the National Alliance for Direct Support
Professionals (NADSP) Code of Ethics (NADSP,
2015). Acknowledging that DSPs are in positions
that may require making decisions involving
practical and ethical reasoning, this code is
meant as a guidebook through the ethical dilemmas they may face in their daily work supporting
individuals with IDD (National Alliance for
Direct Support Professionals, 2015). The Code of
Ethics names several areas and offers detail to
guide DSPs in their important work as supports
for individuals with IDD. These are: (1) personcentered supports; (2) promoting physical and
emotional well-being; (3) integrity and
responsibility; (4) condentiality; (5) justice,
fairness, and equity; (6) respect; (7) relationships;
(8) self-determination; and, (9) advocacy
(NADSP, 2015).
900
Workforce Trends
While DSPs provide essential supports to people
with IDD, they have long been undervalued as a
profession (LaLiberte & Hewitt, Fall/Winter
2007/08). DSPs experience a number of challenges that speak to the minimization of the profession and act as barriers to meeting the
workforce needs. These include low wages (mean
wages have been estimated at $9.49 per hour), a
lack of paid health insurance and vacation, and
low retirement plan contributions (Larson,
Hewitt, & Knoblauch, 2005; PHI, 2013). In addition, the low wages, limited training opportunities (both initially and, importantly, ongoing),
and the lack of recognition for the skill required
to provide high quality supports, result in high
turnover rates, estimated annually at 38 % to over
50 % nationally (ANCOR, 2010; Hewitt et al.,
2008; NADSP, 2010).
Turnover, increased demand for services, and
demographic changes in the USA results in a
high demand for new DSPs. The US Dept. of
Labor Statistics estimates a nearly 70 % increase
in DSP jobs by 2020 (US Department of Labor,
2015). The expected growth of DSPs (not limited
to solely those supporting people with IDD) represents an expected workforce of about ve million by the year 2020, making it one of the fastest
growing sectors of the American workforce (PHI,
2013). Projections suggest that direct support
may be the largest job classication in the USA
by the year 2020 (PHI, 2013). While the need is
high, it is difcult to recruit, train and keep these
workers when their pay is so low and their jobs
are so demanding.
Outcomes
In the USA, investments in services and supports
for people with IDD are vast. In FY 2011, in the
USA, $56.65 billion was spent on services and
supports for people with IDD. This included $22.1
billion on Intermediate Care Facilities for people
with IDD, $49.2 billion on Home and Community
Based Services, $5.6 billion on Medicaid administration, rehabilitation, case management, and per-
Future Implications
Policy Implications
In the USA, an important priority has been to
expand community services while decreasing the
use of congregate care and institutional services
for people with IDD. The federal government has
employed a number of strategic programs
designed to assist states in community living
expansion. For example, the CMS implemented
the Money Follows the Person program, which
provided nancial incentives to states to promote
people with IDD moving from institutional services into smaller community settings. The new
HCBS regulations rened the denition of community living, requiring additional privacy protections and ensure person centered services.
New options provided under the Affordable Care
Act to increase self-direction and personal care
supports through Medicaid will increase options
for community living and participation.
Challenges still exist. States vary and some still
rely heavily on institutional levels of care to support community living. Efforts to ensure equal
901
Practice Implications
Provider agencies that deliver residential services
are facing increased pressure to do more with less
money as the federal government and states
simultaneously face increased demand for services and budget decits. Traditional group home
models of residential services in which four to six
people reside in a home owned or rented by a
provider agency are an increasingly undesirable
option for funders and people with IDD. Options
such as shared living, supported living, and other
902
Workforce Implications
Competency-based professional development is
vital to the workforce in terms of training and
ongoing quality, and ethical service provision.
Organizations, managers, human resource professionals, trainers, DSPs, people with IDD, families and their allies must work in concert to move
towards competency-based professional development. Orientation to the job and minimal annual
training based on topics and regulated requirements are not sufcient. DSPs require an individualized and highly complex skill set in order
to facilitate opportunities and positive outcomes
related to community living. Training should be
seen as an investment that can inuence staff
retention, increase DSP performance, and promote better outcomes for people served.
Finding, keeping and training direct support
staff in self-directed supports presents particular
challenges because individualized budgets available to people with IDD in self-directed programs
Conclusion
Community living and participation is an expectation of individuals with IDD, families, policy
makers, and practitioners. Promises of community living and participation have been made to
people with IDD through many laws, policies,
and initiatives in the USA. Opportunities for
community living and participation have
expanded since the mid-1960s when deinstitutionalization began. The expansion of community living options has led to increased social
involvement, better living conditions, more work
opportunities, and increased community participation. Yet not all people with IDD have opportunities to be fully included or participate with
others in their community. In addition, far too
few people with IDD who want to work are actually engaged in paid employment. Ensuring that
the services and supports that are available to
individuals with IDD fully prepare them to access
and participate in their communities is essential.
Acknowledgements Development of this chapter was
funded through Grant #133B130006 to the Research and
Training Center on Community Living by the National
Institute on Disabilities and Rehabilitation Research, US
Department of Education and through cooperative agreements #90DN0291-01 and #90DN0297 from the
Administration on Community Living, US Department of
Health and Human Services. Grantees undertaking
projects under government sponsorship are encouraged to
express freely their ndings and conclusions. Points of
view or opinions do not therefore necessarily represent
ofcial NIDRR or ACL policy.
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35
James K. Luiselli
Introduction
Medical and public health ofcials have long
acknowledged that people with intellectual and
developmental disabilities (IDD) and related neurodevelopmental disorders experience poorer health,
shorter lifespans, and less access to professional
health care compared to individuals without
disabilities (US Public Health Service [USPHS],
2002). Thankfully, this situation is improving due to
advances in health care policies, research, and
practitioner training, to name a few recent trends
(Anderson et al., 2013). Of note, Increasingly,
research and health care are being directed toward
preventing conditions that can give rise to disability
in the rst place and toward increasing access to
health and wellness services for individuals already
living with a disability (US Department of Health
and Human Services, 2005, p. 7).
Notwithstanding these recent developments,
there are several factors that continue to affect
poor health and wellness among people with
IDD. For example, some medical problems, usually persistent and lifelong, stem from genetic etiology associated with conditions such as Down
syndrome, Williams syndrome, and PraderWilli
J.K. Luiselli (*)
Clinical Solutions, Inc. and Northeast Educational
and Developmental Support Center,
1120 Main Street, Tewksbury, MA 01940, USA
e-mail: jluiselli@needsctr.org
907
908
Epidemiology
Obesity is a serious health concern that can lead to
heart disease, stroke, diabetes, and hypertension
(National Task Force on the Prevention and
Treatment of Obesity, 2000). Reported rates of
obesity in people with IDD living in the USA
range from 21 to 33.6 % (Moran et al., 2005;
Stancliffe et al., 2011). In persons with Down syn-
J.K. Luiselli
909
J.K. Luiselli
910
911
912
J.K. Luiselli
enced differently by several environmental contexts such as access to an open grassy play area, a
play area with outdoor toys, a play area equipped
with playground equipment, and a play area containing materials for indoor activities. Making
available particular materials and equipment
would appear to be low-demand and possibly
permanent interventions that schools and community settings can offer to encourage healthbenecial physical activity to a large population
of people who have IDD.
Cigarette Smoking
Notwithstanding the pronounced health risks
from smoking cigarettes, there is a sparse but
emerging treatment literature for people with
IDD. Peine, Darvish, Blakelock, Osborne, and
Jenson (1998) sought to reduce the number of
cigarettes two adults smoked at a developmental
disabilities center. Preceding intervention, the
adults received positive reinforcement in the form
of cigarettes contingent on the absence of challenging behavior. The smoking reduction intervention plan introduced other reinforcers with
cigarettes (coffee, soda, candy, magazines) that
could be earned by spinning a wheel and accepting the reward it landed on. This procedure lowered the probability of receiving cigarettes each
day and ultimately reduced smoking by 50 %.
Singh and colleagues have tested mindfulnessbased therapeutic and support procedures for
people with IDD (Singh et al., 2014b), including
smoking cessation programs. Singh et al. (2011)
described a 31-year-old man with mild IDD and
lengthy history of smoking cigarettes, as many as
30 per day. At the time of the study he lived in a
community group home that restricted him to no
more than 12 cigarettes daily. In a baseline phase
the man self-recorded cigarette smoking frequency before receiving mindfulness training in
three phases. First, a mindfulness instructor
taught the man to afrm his intention of quitting
smoking via verbal reminders such as I will not
smoke anymore. The second phase of mindfulness training concentrated on the man observing
his thoughts and endorsing that he was not his
913
914
J.K. Luiselli
915
Research-to-Practice Translation
In brief summary, the health and wellness
research reviewed in this chapter illustrates many
person-specic, group, and systems-level clinical
applications with children, youth, and adults who
have IDD. Other chapters in the book touch on
similar topics, for example, feeding, sleep, and
safety skills. This broadening focus on health
promotion and intervention has several implications for research-to-practice translation,
reviewed in this section, and with relevance to the
health conditions covered in the chapter.
Interdisciplinary Collaboration
and Consultation
The success of behavioral interventions in the
area of health and wellness depends on a close
alliance between psychologists and multidisciplinary practitioners such as physicians, nurses,
therapists, rehabilitation specialists, and the like.
J.K. Luiselli
916
Intervention Integrity
The potential effectiveness of any behavioral
intervention is largely dependent on procedural
delity. That is, prescribed procedures must be
applied as formulated, written, and trained in
order to properly judge whether they actually
contribute to treatment success or failure. In
many cases seemingly poor results may stem
from inaccurate implementation and not the procedures themselves.
Intervention integrity assessment measures the
procedural delity of practitioners through direct
observation and accompanying performance documentation. Recall the study by LaLonde et al.
(2014) in which young adults with autism increased
the number of steps they walked daily through
goal-setting, pedometer read-outs, and positive
reinforcement. The researchers were present every
day to monitor intervention integrity and recorded
whether the participants wore their pedometers
correctly, completed data sheets, indicated performance goals, and selected reinforcers. Likewise,
Singh et al. (2014a) had a second person independently listen to selected audiotapes of mindfulness
training sessions. This type of intervention integrity assessment was designed to verify the procedural delity of the primary instructor.
Another facet of intervention integrity assessment is providing feedback to practitioners after
observing them implementing procedures
(DiGennaro Reed & Codding, 2011). Feedback
usually consists of praise, approval, and similar
917
Social Validity
Maintenance
Social validity refers to satisfaction with and
acceptance of intervention procedures and outcomes by service recipients and practitioners
(Kazdin, 1977; Wolf, 1978). Positive social validity is desirable because it indicates that the people
J.K. Luiselli
918
therapeutic change after treatment has been eliminated, altered, or substituted in some way. Apropos
to health and wellness, it is many times the case that
an effective treatment regimen is not removed or
discontinued but instead, implemented at reduced
strength and intensity. Attenuating treatment
demands, in fact, is one method to enhance longterm maintenance (Luiselli, 1998). However, practitioners are still burdened with the task of designing
effective maintenance-facilitating strategies since
many factors can impede desired results.
Naturally, a persons desire to maintain treatment, or the motivation of those providing care,
will be dependent on the success of intervention,
whatever the therapeutic intent and level of intensity. Even small revisions to intervention plans can
lessen treatment burden and affect maintenance
positively. Whenever possible, teaching people
self-management skills can be a fortuitous maintenance-enhancing strategy. Because people with
IDD are commonly followed by multiple health
providers, coordinated communication among
professionals is essential so that intervention is
continuous and does not deviate from prescribed
procedures. This caveat is synonymous with the
objectives of treatment integrity, outlined earlier.
Advances in telehealth technology and treatment (Luiselli & Fischer, 2015) gives health and
wellness professionals other options for promoting maintenance. An illustrative example is the
weight reduction program reported by Rimmer
et al. (2013) that featured a telephone-based and
web-assisted remote coaching system. Such
treatment was implemented more efciently with
the clinical population, and sustained over time,
when contrasted to traditional in-person health
visits and intervention. Immediate contact with
practitioners, rapid access to information, automated data recording, real-time video monitoring, and multi-platform exibility are some of the
advantages of telehealth modalities for fostering
intervention compliance and maintenance.
Summary
This chapter on health and wellness of people with
ID reviewed epidemiological statistics, factors contributing to several health conditions, promising
behavioral interventions, and issues of research-topractice translation. There has been meaningful
progress developing integrated medical-behavioral
approaches to prevention and treatment, leading
to more effective care, systems of service delivery, and clinical-research inquiry. Building multidisciplinary collaboration remains a priority, as
does dissemination of evidence-based practices
at the primary level of care. Health and wellness
initiatives in IDD should strive to monitor and
improve intervention integrity, assess social
validity, perform multi-measure outcome and
process evaluation, promote enduring treatment
effects, and continue to have a community and
family focus.
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36
Safety Skills
Jina Jang, Anurati Mehta, and Dennis R. Dixon
Introduction
Safety skills are those many things that a person
learns as they develop, which helps them to
successfully navigate their environment in order
to avoid situations or elements that can lead to
harm. In the typically developing population,
these skills are developed with age and the cognitive ability of an individual plays an instrumental
role in the successful implementation of these
skills. In persons with intellectual and developmental disabilities (IDD), there is often a mismatch between cognitive or behavioral abilities
and the environment, which may result in the
person with IDD being placed in an unsafe situation. Due to cognitive impairments, the individual may be unaware of danger or lack the ability
to correctly implement safety skills (GaeblerSpira & Thornton, 2002). Given that these skills
follow a typical developmental course, children
with IDD are at particular risk for not developing
these skills appropriately. Children with IDD
may have impaired skills such as the ability to
learn and obey safety rules, to estimate their own
physical strength, to understand the risks of a
given situation, and to understand the cause of an
J. Jang A. Mehta D.R. Dixon (*)
Center for Autism and Related Disorders,
21600 Oxnard Street, Suite 1800, Woodland Hills,
CA 91367, USA
e-mail: D.Dixon@centerforautism.com
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As such, it is also very important to teach individuals with IDD how to identify and protect
themselves from physical and sexual abuse.
Further, if a crime occurs, such individuals are
less likely to know that it is important to report the
incident. Individuals with IDD may not comprehend that they have a right not to suffer this abuse.
Enabling people with IDD to become aware that
abuse is illegal is an important rst step in countering abuse (Reiter, Bryen, & Shachar, 2007).
Researchers have identied that there are a
number of factors that play a part in increasing
the vulnerability of individuals with IDD. In general, researchers report that these individuals are
at a higher risk due to poor communication skills,
physical disability, gullibility, and the tendency
to acquiesce with requests from others
(Greenspan, Loughlin, & Black, 2001; Howlin &
Jones, 1996; Sullivan, Brookhouser, Scanlan,
Knutson, & Schulte, 1991; Zhu, Xia, Xiang, Yu,
& Du, 2012). Further, research by Howlin and
Jones (1996) and Sullivan, Brookhouser, Scanlan,
Knutson, and Schulte (1991) indicated that due to
limited communication skills, children with disabilities might lack the ability to disclose abuse.
As a result, they may be seen as easy targets.
Such abuse could manifest as physical or sexual
and may involve their peers or caregivers (Lennox
& Eastgate, 2004).
Gullibility and acquiescence are of particular
note for persons with IDD. Individuals with IDD
often have an unquestioning belief and tend to
put their trust in others (Kempton & Gochros,
1986). Additionally, individuals with IDD often
have a learning history of being reinforced for
compliance with requests. A prevalence study
done in the UK noted that in 84 % of the instances
the perpetrator of sexual abuse faced little to no
resistance (McCarthy & Thompson, 1997).
However, training compliance is also essential
for many important daily activities such as taking
medications, eating, and dressing, to name only a
few examples. The key element then is in teaching the individual to identify inappropriate
requests and to create transparent and accountable systems of care for those persons who are
unable to acquire the discrimination skills.
Epidemiology
The prevalence of injury in children and adolescents with IDD is 1.52 times higher than typically developing children (Slayter et al., 2006).
The most common unintentional injuries in this
population are burns, poisoning, foreign body
injuries, fractures, dislocations, and internal injuries (Rowe, Maughan, & Goodman, 2004).
According to the US Department of Homeland
Security (2011), every year an estimated 85 deaths
and 250 injuries occur due to residential building
res involving individuals with IDD. In 40 % of
the cases, the re was intentional and an IDD was
the human factor contributing to ignition.
Adults with IDD have a higher rate of injuries
and falls as compared to the general population
(Finlayson, Morrison, Jackson, Mantry, &
Cooper, 2010). The authors reported that over a
12-month period, incidence of at least one injury
was 20.5 % in which falling was listed as the
cause of the injury in 12.1 % of the reported injuries. In a population-based comparative study
specically designed to investigate public health
implications of injury in young people with IDD,
Sherrard et al. (2002) found that this group had
mortality rates from injuries that were eight times
higher than the general population. In their study,
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research was conducted in teaching fallprevention strategies in the IDD population. One
study (i.e., Carmeli et al., 2004) focused on
improving balance in individuals with IDD to
reduce injuries by strengthening their physical
health. In addition to exercise interventions, studies teaching skills to identify and address environmental hazards that may cause falls should be
conducted. Given that other behavioral strategies
were effective in teaching other safety skills in
this population, future studies should incorporate
such strategies in teaching fall-prevention skills.
Pedestrian Skills
Previous literature for teaching pedestrian skills
to individuals with IDD is well established.
Pedestrian skills include identifying trafc signals and signs, using sidewalks, and safely
responding to trafc-related signs. The following studies used task analysis, most-to-least
prompting, and progressive time delay procedures in simulated and in vivo settings. Some
studies used simulated instruction to teach
pedestrian skills.
One of the earliest study teaching pedestrian
skills to individuals with IDD was conducted by
Page, Iwata, and Neef (1976). They taught pedestrian skills to ve individuals with IDD, ages
1625 years, using the classroom model. The
authors reported that the classroom intervention
provided fewer environmental problems than
training at community streets. The environmental
factors included inclement weather conditions,
additional time and staff, inherent dangers of the
community streets. A simulated model using the
poster board was constructed, and street, houses,
cars, trees, and people were drawn or glued to the
board. Target skills included recognizing intersection and pedestrian lights and properly crossing
the street with pedestrian signals, tricolored trafc
signals, stop signs, and no signals. One-on-one
training was conducted in a classroom. First, the
trainer gave instructions and the participants performed the target skills using a model city and a
gure. The participants explained their behaviors
as they performed them. Praise, feedback, modeling were provided as necessary. The training was
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Self-Protective Skills
Sexual Abuse Prevention
Individuals with IDD are more vulnerable to
exploitation due to their disabilities, lack of social
skills, and poor judgment skills (Chamberlain,
Rauh, Passer, McGrath, & Burket, 1984;
McCabe, Cummins, & Reid; 1994; Sobsey,
1994). Chamberlain et al. (1984) revealed that
among 87 female patients with IDD who attended
an adolescent health clinic, 25 % had a known
history of sexual assault. Hard (1986) also found
that among their 95 adult participants with IDD,
83 % of women and 32 % of men reported being
victims of sexual abuse. The incidence of sexual
exploitation among individuals with IDD is
higher than those without disabilities (HornerJohnson & Drum, 2006; McCabe & Cummins,
1996; Sobsey & Mansell, 1994). According to
one study, women with IDD have twice the risk
of sexual abuse than women without disabilities
(Sobsey & Mansell, 1994). Children with
disabilities are 3.4 times more likely to experience maltreatment (including sexual abuse) than
those without disabilities (Sullivan & Knutson,
2000). Therefore, it is crucial to teach those with
intellectual disabilities skills to help protect
themselves from these predators.
Over the past 30 years, only a few researchers
have evaluated methods to teach self-protective
skills to individuals with IDD. In 1984, Foxx and
his colleagues used a training program to teach
social/sexual behaviors to six female residents
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Lures of Strangers
In addition to sexual exploitation, abduction is
another problem that may result in serious consequences. Early research demonstrated that typically developing children were able to learn skills
to avoid abduction (Miltenberger & Thiesse-Duffy,
1988; Poche, Yoder, & Miltenberger, 1988).
Given that individuals with IDD are at higher risk
of being victims of such abuse, it is imperative to
teach similar skills to children with IDD. Watson,
Bain, and Houghton (1992) taught self-protective
skills to seven children with moderate and severe
IDD, ages 68. Three target behaviors included to
rmly say/sign/gesture no toward the stranger
who made an inappropriate request, to go by
leaving the stranger and the scene within 15 s of
the interaction, and to tell by reporting the interaction to a known, safe adult. The participants
936
Peer Pressure
Collins, Hall, Rankin, and Branson (1999)
described a program, called Just say no and
walk away, that taught students with IDD to
resist peer pressure (i.e., behaviors or persons
that are harmful to ones health and achievement). The instructor dened inappropriate
behaviors and discussed consequences of these
behaviors. Then the correct responses to these
inappropriate behaviors were modeled and roleplaying was implemented to practice the correct
responses. Daily probe sessions using a confederate were conducted, and instructional sessions
were provided following incorrect responses.
The results showed that teaching peer pressure
resistance to individuals with IDD was effective.
As previously discussed, individuals with IDD
are more prone to be victims of abuse; therefore,
it is critical to teach self-protective skills to prevent sexual abuse and resist lures of strangers and
peer pressure to individuals with IDD. Available
research showed that such protective skills can be
taught to individuals with IDD using feedback,
self-monitoring, reinforcements, and role-play. In
situ training and assessment should be used while
evaluating the self-protective skills to promote
generalization; however, in situ assessments
should be used with caution because it may cause
distress and/or trauma for the participants.
J. Jang et al.
of six experimental groups: (1) individual modeling and verbal instruction; (2) group modeling
and verbal instruction; (3) individual modeling
only; (4) group modeling only; (5) Individual
control group and (6) group control groups. All
participants improved on the telephone skills;
they learned to pick up the telephone, dial, accurately report the re and relevant information,
and correctly request to see the doctor.
Extending from previous research that taught
skills such as dialing the correct number and
making emergency calls, Risley and Cuvo (1980)
focused on more advanced telephone skills such
as deciding whom to call (i.e., re, police, doctor). The authors trained three adults, ages 2652
years, with IDD to make emergency phone calls.
The participants were taught to decide whom to
call, locate the telephone number in the directory,
dial the number, and answer questions by the
operator. Successive levels of prompting (e.g.,
verbal, modeling, physical) were implemented
during the training. Praise was provided after a
correct response with and without prompts, and
the feedback was given after each training trial.
All three participants acquired the skills, and the
target skills were generalized across different
people and settings and maintained at 1 and 2
weeks follow-up.
Spooner et al. (1989) taught three adolescents
with IDD, ages 1617 years, to use home telephones to call 911 and explain different types of
emergency situations (e.g., re, poison, falls,
shock). The training procedure included modeling,
rehearsal, prompting, and reinforcement. All participants learned to communicate an emergency
rapidly, and the skills were maintained at 6 and 12
weeks follow-up.
Collins et al. (1993) compared the effectiveness of in vivo instruction with and without a preliminary simulation component in teaching eight
students with moderate IDD, ages 1519 years, to
operate a payphone. The in vivo training was conducted in natural settings (e.g., entry street to the
high school, public pay telephones). The task
analyses for telephone use were developed, and
the participants practiced the target skills with a
delayed prompting procedure. The simulation
training session was conducted in the participants
classroom; the teacher simulated a street using
36
Safety Skills
937
938
J. Jang et al.
36
Safety Skills
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37
Toilet Training
James S. Smith and Brandy Chaneb
Introduction
Learning to achieve bladder and bowel continence
is a practice, which traverses time and culture.
Civilizations around the world, prior to development of the scientic method, have employed a
variety of strategies aimed at teaching appropriate
time and place for elimination. These strategies
have been passed down, each generation adding to
the next, as caregivers grapple with this difcult
task. Indeed, toilet training is a signicant developmental milestone as it provides an individual with
more independence and social inclusion. For individuals with intellectual and developmental disabilities (IDD), the prospect of toileting training
may be especially challenging (Fleisher, 2004).
It has long been recognized that toileting difculties may result in numerous issues, including
urinary tract infections, constipation, hygiene
problems, decreased independence, and social
stigma (Burgio & Burgio, 1989). Although there
is a paucity of published literature related to
prevalence rates, some studies have suggested
rates of incontinence among children with intellectual and developmental disabilities to range
943
944
37 Toilet Training
Characteristics of Empirically
Validated Toileting Techniques
Scheduled Toileting
With the exception of ve studies (Barman et al.,
1981; Friman & Vollmer, 1995; Lancioni et al.,
2002; Lancioni & Marcus, 1999; Tarbox et al.,
2004), regular toileting schedules were utilized.
Toileting intervals were most commonly scheduled for 30 min (Azrin & Foxx, 1971; Cicero &
945
9
14
1 M/0 F
1 M/0 F
414
6 M/2 F
1.53
15
46
619
unstated
22 M/12 F
0 M/1 F
2 M/0 F
46
35
2 M/1 F
5 M/0 F
3
5
34
1
2
314
48
41 M/14 F
3 M/0 F
55
3
M=8
19 M/7 F
26
M = 37
7 M/5 F
12
Study
Averink et al. (2005)
A, U
A, U
A, H, PP, R+, U
A
H, R+, Sc
H, R+, Sc, U
H, R+, Sc, U
Age range
Sample size Study sample (years)
Methods
27 M/13 F
H, PP, R+, RR, Sc,
40
444
U
9 M/0 F
A, H, P+, R+, Rn,
9
2062
RR, Sc, U
29 M/15 F
H, R+, Rn, Sc, U
44
315
School
School
Home
Institution
Home
Mixed (institution/home)
Institution
School
School
Home
Institution
Home
Home
Institution
Institution
Setting
Mixed (institution/home)
Day
Day
Day
Day
Day
Day
Day
Day
Day
Night
Day
Night
Night
Night
Day
ABAB
ABAB
ABA
ABA (concurrent
multiple baseline)
ABA
ABA
ABA
ABA
ABA
ABA
13
27
0.17
35
5
17
11
96
14
24
14
14
21
Moderate
Moderate
Moderate
Moderate
Moderate
Strong
Strong
Strong
Strong
Strong
Strong
Strong
Strong
Strong
Strong
Average
duration of
training (days) Evidence
4
Strong
29
10
21
1 M/0 F
1 M/0 F
1 M/0 F
35
4 M/2 F
28
1720
19
2
8
6
3
11
2 M/0 F
1 M/0 F
1 M/0 F
1 M/0 F
1 M/0 F
2
1
1
1
1
0 M/1 F
0 M/2 F
0 M/1 F
1 M/0 F
1
2
1
2 M/1 F
H, PP, R+, Sc
R+, Sc
RR, R+, Sc
R+, R-, Sc,
R+, Sc
R+, Sc, U
R+, RR, Sc
A, C, H, PP, R+, Sc
Institution
Home
Home
Institution
Institution
School
Home
Institution
School
Institution
Home
School
Home
School
Day
Day
Day
Day
Night
Day
Day
Day
Day
Day
Day
Day
Day
Day
ABAB
ABAB
ABABA
ABA (nonconcurrent
multiple baseline)
ABA (changing
criterion design)
ABA
ABA
ABCDC
ABA
ABA (withdrawal
design)
ABA (nonconcurrent
multiple baseline)
ABA
ABA
ABAB
59
14
3
16
56
63
21
29
62
25
18
Moderate
Strong
Strong
Moderate
Strong
Strong
Strong
Moderate
Moderate
Strong
Strong
Strong
Moderate
Moderate
A alarm, H = overhydration, PP = positive practice, R+ = positive reinforcement of successful toileting, R = negative reinforcement of successful toileting, Rn = restitution, RR = response
restriction, Sc = scheduled toileting, U = removal of absorbent underpants
Saloviita (2000)
Saloviita (2002)
Sells-Love, Rinaldi, and
McLaughlin (2002)
Tarbox, Williams, and
Friman (2004)
Taylor, Cipani, and Clardy
(1994)
Wilder, Higbee, Williams,
and Nachtwey (1997)
948
Overhydration
A common feature of empirically valid toilettraining is an overhydration protocol. At its most
basic, an overhydration protocol involves encouraging an individual to drink more liquid than they
would otherwise normally drink for the purpose
of increasing the frequency of urination
(Thompson & Hanson, 1983). This provides more
frequent opportunities for training to occur, and
protocols that utilized overhydration (Averink
et al., 2005, Azrin et al., 1973, 1979; Azrin &
Foxx, 1971; Azrin & Thienes, 1978; Cocchiola
et al., 2012; Didden et al., 2001; Foxx & Azrin,
1973a; Kroeger & Sorenson, 2010; LeBlanc et al.,
2005; Rinald & Mirenda, 2012; Saloviita, 2000,
2002; Sells-Love et al., 2002; Taylor et al., 1994;
Wilder et al., 1997) as opposed to those that did
not were able to perform training in signicantly
less time (median of 14 days vs. 26 days, respectively), although the interval of encouraging uid
intake varied among studies. Studies that focused
on bedwetting offered uids less frequently than
those that focused on daytime wetting.
A major consideration when using overhydration is the individuals risk for electrolyte imbalance. Thompson and Hanson (1983) provided
guidelines for determining the maximum amount
of uid that should be used in an overhydration
protocol with the recommendation that the individual obtain medical clearance prior to the initiation of the protocol (see also Brazelton et al., 1999
for a discussion of medical issues that can affect
toilet-training). Based on available research, the
amount of training time needed can be signicantly shortened by using an overhydration protocol, and best practice would support using the
shortest duration protocol that is clinically effective. However, given the strength of research on
both sides, toilet training is still a realistic goal if
overhydration is medically contraindicated.
Averink et al. (2005), while exploring the effectiveness of response restriction, utilized a clearly
dened overhydration protocol, following the
Wetness Alarm
The use of a wetness alarm has been consistent in
the literature on enuresis since the early days of
empirical study (Mowrer, 1938; Mowrer &
Mowrer, 1938). Mowrer and Mowrer (1938) used
a 14-day training protocol in which they reported
signicant success, but intermittent relapse after
discontinuation of the wetness alarm. The outcomes noted by Mowrer and Mowrer (1938) are
consistent with results of studies performed over
six decades later (Friman & Vollmer, 1995;
Lancioni et al., 2002; Lancioni & Marcus, 1999).
Consistent use of a wetness alarm as a component of toilet training began with Azrin and Foxx
(1971) and Azrin, Bugle, and OBrien (1971)).
In the studies we reviewed, there was a difference in median training time required between
studies that utilized an alarm versus those that did
not use an alarm (14 days vs. 21 days, respectively). A possible confound was noted in that
some studies utilized a clear operant paradigm in
combination with use of the wetness alarm,
whereas others did not have clear reinforcement
noted. When controlling for three different
combinations (those using both the alarm and
reinforcement, those with only the alarm, and
those with only reinforcement), a much different
picture emerges. In studies that utilized both an
alarm and reinforcement for appropriate urinations (Azrin et al., 1973, 1974; Azrin & Foxx,
37 Toilet Training
949
Use of Briefs
Using regular briefs has been a staple of toilet
training since the early days of the empirical
study of toilet training (Mowrer & Mowrer,
1938). The advantage of using a regular brief is
increasing the ease of the trainee feeling accidents (Azrin & Foxx, 1971; Tarbox et al., 2004)
and increasing the ease of detection by the alarm
apparatus (Azrin & Foxx, 1971, Azrin et al.,
1971; Mowrer, 1938; Mowrer & Mowrer, 1938;
Tarbox et al., 2004). In addition, use of regular
briefs allows escape from the sensation of wetness
to be used as a negative reinforcer for appropriate
toileting (Tarbox et al., 2004).
A review of the studies supports the use of
regular briefs over a diaper. Study protocols
which utilized regular briefs (Averink et al.,
2005; Azrin et al., 1973, 1974, 1979; Azrin &
Foxx, 1971; Azrin & Thienes, 1978; Cicero &
Pfadt, 2002; Cocchiola et al., 2012; Duker et al.,
2001; Foxx & Azrin, 1973a; Lancioni et al.,
2002; Lancioni & Marcus, 1999; Ricciardi &
Luiselli, 2003; Saloviita, 2000, 2002; Tarbox
et al., 2004; Taylor et al., 1994) as opposed to
using a diaper (Barman et al., 1981; Didden et al.,
2001; Friman & Vollmer, 1995; Kroeger &
Sorenson, 2010; LeBlanc et al., 2005; Lee et al.,
2014; Luiselli, 1994, 1997, 2007; Post &
Kirkpatrick, 2004; Rinald & Mirenda, 2012;
Wilder et al., 1997) showed signicantly shorter
training periods (median of 13 days vs. 24 days,
respectively). Given these results, the evidence is
overwhelmingly in favor of using regular briefs
as opposed to diapers (Tarbox et al., 2004).
Tarbox et al. (2004) utilized a brief to demonstrate that use of a brief in and of itself, in the
absence of other specic training, can lead to a
signicantly fewer episodes of urinary inconti-
950
Overcorrection
Overcorrection is a behavioral consequence that
is often viewed as a variation on punishment
(MacKenzie-Keating & McDonald, 1990,
Miltenberger & Fuqua, 1981; Murphy, 1978).
Two types of overcorrection have been reported
in the literature, restitution and positive practice.
Restitution is the act of reversing the negative
effects of a particular behavior on the environment, whereas positive practice is the exaggerated repetition of the desired behavior (Azrin &
Foxx, 1971; Miltenberger & Fuqua, 1981). In
this review, 13 studies utilized either restitution
(Didden et al., 2001), positive practice (Averink
et al., 2005; Duker et al., 2001; Foxx & Azrin,
37 Toilet Training
951
Response Restriction
Reinforcement
952
Conclusions
Toilet-training is one of the more essential skills
to master for a person with intellectual and developmental disabilities in order to develop functional independence at home and in the
community (Kroeger & Sorenson, 2010; LeBlanc
et al., 2005). Some of the ways that caregivers
attempt to address incontinence, such as the use
of diapers, have been shown to increase incontinence (Tarbox et al., 2004). Multiple studies have
demonstrated that toilet training may typically be
37 Toilet Training
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38
Introduction
There is a growing body of research on substance
use and substance use disorders among individuals with intellectual and developmental disabilities (IDD). They have been identied as a group
at risk for negative consequences of substance
use and abuse (McGillicuddy, 2006; Slayter,
2010a, 2010b). The abuse of substances may
have a range of somatic, psychological and social
adverse consequences for individuals with IDD,
such as mental health problems (e.g., McCusker,
Clare, Cullen, & Reep, 1993), problems related
to health (e.g., Gale, Naqvi, & Russ, 2009), daily
activities and relationships (e.g., To, Neirynck,
Vanderplasschen, Vanheule, & Vandevelde,
2014), and offending (e.g., Lindsay et al., 2013;
McGillivray & Moore, 2001).
According to the American Psychiatric
Association (2013), substance use disorders (SUD)
encompass a wide range of disorders from a mild
to severe state of chronicity, relapsing and compulsive substance use. In SUD, substances are used in
larger amounts or over a longer period of time than
Even though individuals with IDD, and especially those with mild to borderline IDD (IQ
range 5085), are increasingly recognized as a
group at risk for substance use disorders, little is
known about its prevalence and associated (risk)
957
958
Tobacco
The prevalence of tobacco use in individuals with
IDD varies between 7 and 36 % across studies
(see Singh et al., 2011), depending on the sample
size, living arrangements, age, gender, level of
ID, and comorbid psychiatric disorder. In their
review of tobacco use in individuals with IDD,
Steinberg, Heimlich, and Williams (2009) concluded that prevalence rates of smoking are based
on small-scale surveys including heterogeneous
samples of individuals with differing patterns of
tobacco use. Smoking rates are reported to be
higher in individuals with mild IDD than in individuals from the general population; higher in
males with IDD than in females; and higher in
individuals living independently or in a group
home than in those living in a family or residential facility. The highest percentages of smoking
(up to 83 %, Westermeyer, Kemp, & Nugent,
1996), however, were found among those who
also used other substances such as alcohol and
illicit drugs.
R. Didden et al.
38
Shortcomings of Epidemiological
Studies
Reliable data on the prevalence of substance (ab)
use in individuals with IDD are lacking (Carroll
Chapman & Wu, 2012; Van Duijvenbode et al.,
2015). This is not surprising given the challenges
959
Interventions
In this section, we summarize studies on treatment programs addressing the (ab)use of tobacco
and/or alcohol in individuals with IDD. As far as
we know, no studies have been conducted on the
effectiveness of an intervention for illicit drugs in
this target group.
Tobacco-Related Interventions
Several studies have been conducted aimed at
reducing tobacco smoking. In three studies, the
intervention consisted of a program in which participants were educated about smoking. Kelman,
Lindsay, McPherson, and Mathewson (1997)
investigated the effectiveness of a smoking cessation program for individuals with IDD. They
implemented a health education program with
ve adults (range: 2640 years) of whom two
were smokers. The training package consisted of
role-play, video, and quizzes, and was implemented in seven weekly group sessions that
focused on adverse nancial, physical and social
consequences of smoking and benets of being a
960
nonsmoker. Results showed that knowledge levels increased in all ve participants following
intervention, an effect that was largely maintained at a 3-months follow-up.
Tracy and Hosken (1997) also evaluated a
smoking educational course in a sample of 11
individuals (<25 years) with IDD who were all
smokers. The course was an adaptation of an
established generic smoking cessation program
and consisted of seven weekly group sessions
with discussions, videos, role-play, and board
games. Overall, the knowledge scores improved
and three participants stopped smoking after the
intervention while another three participants
reduced their smoking. Chester, Green, and
Alexander (2011) reported nicotine replacement
therapy, combined with health education, to be
effective in cutting down smoking rates and
tobacco consumption in 79 individuals with IDD
residing in a forensic inpatient unit. There were
seven weekly group sessions consisting of discussions, quizzes, and videos. In addition, nurses
provided one-on-one health information that supported clients in the cessation of smoking. There
were 48 smokers on admission and 15 were successful in their attempt to stop smoking.
In addition to programs aiming to increase
tobacco-related knowledge, there are a small
number of studies on intervention programs aiming primarily to cut down or stop smoking. For
example, Peine, Darvish, Blakelock, Osborne,
and Jenson (1998) implemented an intervention
in which they used a spinning wheel (similar to
the Wheel of Fortune television program) to
reduce smoking by two adults with IDD who, up
until the intervention, had received cigarettes for
not engaging in challenging behavior (e.g.,
aggressive behaviors) for an hour. During intervention, absence of challenging behaviors for an
hour led to the opportunity to spin the wheel that
offered various choices including among others,
cigarettes, coffee, diet candy, and magazines, thus
replacing the reward of a cigarette with other
options. Eventually, this led to a 50 % reduction in
smoking by the end of the 3-year study.
Singh and colleagues conducted three studies
in which they used mindfulness as an intervention for smoking. In their rst study (Singh et al.,
R. Didden et al.
2011), they used this procedure with a 31-yearold man with mild IDD who had been a smoker
for 17 years, smoking 12 cigarettes per day.
During intervention, he was instructed to keep a
daily log of his smoking, taught to verbally selfafrm his intention to quit, handle his thoughts
about smoking, and to move the focus of his
attention from the craving to a neutral point on
his body. He was scheduled to decrease smoking
by one cigarette every time he was able to maintain three consecutive days on his previous number of cigarettes. In 90 days, he stopped smoking
and maintained this result at 1-year and 3-year
follow-up. Singh et al. (2013) reported similar
results of this mindfulness-based program in
three adults with mild IDD who lived together in
an apartment. Recently, Singh et al. (2014) used a
mindfulness-based cessation program versus
treatment as usual in a randomized controlled
group design study with 51 individuals with mild
IDD, smoking between 80 and 85 cigarettes per
week. Results showed that the mindful-based
program was more effective than treatment as
usual in reducing the number of cigarettes
smoked per individual. Also, individuals who
received the mindful-based intervention were
more successful at abstaining from smoking
cigarettes at a 1-year follow-up.
Alcohol-Related Interventions
Education programs have also been used in treatment programs for alcohol (ab)use. McCusker
et al. (1993) evaluated the effectiveness of an
alcohol education intervention for ve individuals
with mild IDD (IQ 6069) during six 12 h sessions one/twice a week over a period of 4 weeks.
Group sessions involved the use of video clips
from television programs about alcohol, roleplays (e.g., refusing drinks), discussions and trips
to a public bar where basic pub skills (e.g., drinking slowly) were practiced. Results showed that
the intervention resulted in increased knowledge
about alcohol and a change in attitude towards
alcohol (e.g., positive attributions decreased).
Mendel and Hipkins (2002) used motivational
interviewing techniques with seven males (1854
38
961
Evidence-Based Practice
Although several educational and intervention
programs to educate clients about the adverse
effects of tobacco and alcohol use, and to reduce
the actual use of these substances have been evaluated in the past years, the evidence on the feasibility, appropriateness, meaningfulness and
effectiveness of these interventions remains small
(Kerr, Lawrence, Darbyshire, Middelton, &
Fitzsimmons, 2013). In a systematic review of the
effectiveness of substance use-related interventions for individuals with IDD, Kerr et al. identied only nine articles published between 1996
and 2011, most were of poor to moderate methodological quality in terms of design, reliability and
description of procedures, and had been conducted with a small number of participants.
Also, only a small range of different intervention approaches (i.e., education, motivational
interviewing, cognitive behavioral techniques)
have been used in the treatment of substance (ab)
use in individuals with IDD. In all cases, interventions were adapted (e.g., simplied language,
use of pictorial stimuli) to the needs of individuals who functioned in the mild to borderline
range of IDD. Most often, treatment packages
were implemented for reducing substance (ab)
use in participants and no conclusions can be
drawn on which elements contributed to the
effectiveness of an intervention. Furthermore,
educating participants about the (adverse) consequences of substance (ab)use did not lead to a
decrease in actual substance use. As far as we
know, interventions targeting illicit drugs or prescribed medications in individuals with IDD have
not been reported in the literature.
R. Didden et al.
962
Case Identication
To be able to provide adequate care and treatment, recognition of comorbid SUD and IDD
needs to be improved. This includes both identifying individuals with (mild to borderline) IDD
in addiction care as well as recognizing substance
use disorders in those with IDD. The rst is not
routinely done yet, even though there are some
promising results using instruments for screening
for cognitive impairment in addiction medicine
(e.g., To, Vanheule, Vanderplasschen, Audenaert,
& Vandevelde, 2015). Assessing substance use
and substance use patterns on an individual basis
(i.e., interviewing individual clients) is probably
the most straightforward way to improve early
detection and intervention in individuals with
IDD. Unfortunately, widely used substance use
screening instruments may be unreliable in this
population (VanDerNagel, Kemna, & Didden,
2013), and there still is a lack of (validated) questionnaires on substance use, tailored to the needs
of those with IDD.
A new instrument in this area is the Substance
Use and Misuse in Intellectual Disability
Cross-System Collaboration
In addition to case identication, access to substance abuse treatment also needs to be improved
for individuals with IDD. Individuals with IDD
experience barriers to accessing substance abuse
treatment, for example in addiction services. A
small number of studies have explored factors
that limit accessibility to addiction services for
individuals with IDD. In an early study, Lottman
(1993) found that most services had little experience in the treatment of individuals with
IDD. Lack of expertise of staff was the strongest
barrier to treatment access. This outcome was corroborated by those from a survey by VanDerNagel,
Kiewik, Buitelaar and De Jong (2011) among 39
IDD services in the Netherlands. Most services
reported to have inadequate expertise with substance use of clients with IDD. Respondents also
noted that substance users face a number of psychosocial problems that the service providers
were poorly equipped to address.
38
963
Future Research
Although the topic of SUD in individuals with
IDD has enjoyed increased attention during the
past decade, there are still many gaps in the literature on prevalence and risk factors and there is
a lack of valid tools and effective treatment interventions. Van Duijvenbode et al. (2015) have
proposed several lines of research that will be
briey summarized here.
First, research in larger samples of individuals
with IDD is called for in order to plan treatment
capacity and develop strategies for prevention
and early detection of substance abuse. It should
include a variety of research methods, such as
biomedical markers of substance use and abuse
(to validate measurement instruments), administrative data, and multicenter studies addressing
the methodological shortcomings in extant studies (also see VanDerNagel et al., 2014). In epidemiological studies, risk factors may be explored
such as motives for substance use, client characteristics (e.g., personality traits) and social factors (e.g., living arrangements). Furthermore, the
prevalence of so called triple diagnosis (IDD,
substance use disorder, and mental health problem) may be of interest as there is a relatively
large number of individuals with mild to
964
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Index
A
ABA. See Applied behavior analysis (ABA)
ABABAB withdrawal design, 950
ABAB sequence, 392, 393
Aberrant Behavior Checklist (ABC), 354
Abnormal Involuntary Movement Scale (AIMS), 362
Acceptance and Commitment Therapy (ACT), 284, 317
Active support
activity engagement, 539
activity scripts, 540
adaptive skills, 548, 549
coaching sessions, 545
denition, 538
development, 538, 539
evaluation studies
activity engagement, 546, 547
adaptive skills, 548
challenging behaviors, 547
demonstration projects, 546
depression, 548
resident outcomes, 547
staff contact, 547
experimental studies, 549
leadership, 554
learning event, 544
meaningful activities, 546
monitoring and evaluation, 541
multi-occupancy households, 540
organizational and interpersonal technologies, 543
organizational context, 545
organizational issues
accommodation services, 553
bulk supplies, 553
contemporary services, 554
data driven practice, 553
hotel model, 553
staff support, 553
person-centered values, 541543
quality of life, 538
research evidence, 545, 546
967
968
Ambulation, 391393
Anger management treatment (AMT)
arousal and cognitions, 730
CBT, 729
cognitive preparation phase, 730, 731
effectiveness, 743, 744
emotions, 730
follow-up study, 731
group therapy format, 731
idiomatic situations, 730
problem-solving exercises, 730
randomized controlled trial
anger inventory, 732
Novaco treatment, 732
outcome, 733
provocation inventory, 732
treatment, 733
waiting list control studies, 733
relaxation exercises, 729
stress inoculation, 730
violence, 731
well-controlled study, 731732
Antecedent-based interventions, 737739
Antianxiety medication, 741
Antipsychotic medications, 352, 353
Applied behavior analysis (ABA), 418, 443, 512
Aripiprazole, 358, 359
Assessment, Evaluation, and Programming System for
Infants and Children (APES), 496
Assessment of Basic Learning Abilities (ABLA), 881
Assessment of Functional Living Skills (AFLS),
234235
Assistive technology
denition, 383
efcient usage, 383
microswitch-aided programs (see Microswitch-aided
programs)
needs of persons, 383
rehabilitation personnel, 383
Attention decit hyperactivity disorder (ADHD), 103,
244, 252
Autism spectrum disorder (ASD), 32, 101, 102, 252,
352, 472
Aversives, 417
B
Barnes Akathisia Rating Scale-Revised, 362
Basic living skills module, 234
Behavioral skills training
contextual model, 616
parenting skills
ancillary and personal issues, 625
audiovisual materials, 620
behavior analytic approach, 616
child improvements, 624
child-care skills, 619
components, 617
evidence-based parent education, 618
Family Game training program, 625, 626
Index
game formats, 624
generalization strategies, 623, 624
good test-retest reliability, 617
health-care professionals, 618
least-to-most prompting, 620
maintenance strategies, 623
modeling, 620
observations, 617, 618
parental well-being and social support, 624
performance feedback, 623
positive reinforcement, 623
randomized and quasi-randomized studies, 619
recommendations, 620
roleplaying, 622
skill-focused programs, 619
task analysis, 620
verbal instructions, 620
video modeling and feedback, 625
recommendations, 626628
Behavior Problems Inventory (BPI), 354
Behavior Support Plan Quality Evaluation Guide
(BSP-QE), 459
Behavior support plans (BSP), 458
Beta-blockers, 348, 352
British National Formulary (BNF), 350
Buddha, 312
C
California Verbal Learning Test for children (CVLT),
357
Care and Needs Scale (CANS), 149
Caregivers
ACT workshops, 319
applied behavior analysis, 319
care recipients
automatized behavior, 320
bidirectional relationship, 320
parenting stress, 320
MBSR program, 318
mindful-based interventions, 330
mindfulness training
behavior change, 319
family caregivers, 319, 334, 338
mindful parenting, 319
paid caregivers, 338, 339
positive effects, 319
Cerebral folate deciency, 256
Challenging Behavior Attributions scale (CHABA), 458
Challenging Behavior Staff Perceptions Questionnaire
(CBSPQ), 458
Checklist for Challenging Behavior (CCB), 460
Checklist of Child Characteristics (CCC), 149
Childrens Assessment of Participation and Enjoyment
(CAPE), 878
Childrens Reinforcement Survey Schedule (CRSS), 102
Circadian rhythm management (CRM), 817
CLAMPS Abnormal Movement Scale, 362
Clinical Global Impression (CGI), 354
Cog-Med, 270
Index
Cognitive behavior therapy (CBT)
adaptation
automatic thoughts and accuracy, 292294
carers and family members, 296, 297
cognitive decits, problems, 287, 288
communication and engagement, 290, 291
emotional literacy, 288
executive functioning decits, 289
homework, 295, 296
memory decits, 289
monitoring thoughts and feelings, 292
resilence, 297, 298
schemas, 294
self-directed behavior, 289
self-image, 294, 295
self-instructional training, 288
setting an agenda, 291
socratic process/guided discovery, 291, 292
style of presentation, 287
assumptions, 283
clients therapy session, 286
cognitive deciencies, 285
cognitive distortions, 284
cognitive schema, 284, 285
controlled trials, 284
depressive triad, 284
effectiveness
anger management, 298300, 303
treatment, 303, 304
frequent use, 283
intellectual disability
dependency, 305
engagement, 306
features, 304
motivation, 305
pace of treatment, 306, 307
stigma and negative social comparison, 305
IRT, 287
lay therapists, 287
manualized interventions, 286
methods, 286
principles, 286
REBT (see Rational Emotional Behavior Therapy
(REBT))
screening, 304
therapeutic disdain, 283
therapist and client relationship, 286
time dependent, 286
toolkit, 287
Cognitive deciencies, 285
Cognitive distortions, 284
Cognitive schema, 284
Cognitive Therapy Scale for Psychosis, 287
Communication
apply and evaluation, 844
appraise the evidence, 844
clinical construct, 843
cues-pause-point, 834835
dysuency treatments, 834
electronic databases, 843
969
epidemiology, 828, 829
etiology, 825, 828
FCT
evidence, 838
experimental-functional analysis, 837
frequency, severity, and persistence, 836
instructional procedures, 837
problem behavior, 837
systematic/meta-analytic reviews, 838
high quality, 824
imitation training, 832833
impairments, 824825
IPCA, 831
issues, 832
manual signs and gestures, 838839
meta-analyses and systematic reviews, 843
mild and moderate intellectual disability, 826, 827
milieu therapy, 835836
parents ranked, 823
PECS, 839841
prevalence, 825826
REEL-2, 830
reliable and valid assessment, 829
severe and profound intellectual disability, 827, 828
SGDs, 841843
stimulus-stimulus pairing, 833
Vineland Adaptive Behavior Scales, 830
Community-based service system
assessment scales, 147, 148
CANS, 149
CCC, 149
deinstitutionalization, 137
I-CAN, 149
NC-SNAP, 149
NSSQ, 149
PCP processes
ambiguity, 142
assessment and planning process, 146
clinical practice, 142
collective evidence, 143
ELP, 144, 145
features, 143, 144
longitudinal study, 143
MAPS, 144
PATH, 145
PICTURE, 145, 146
positive changes, 143
systematic peer-reviewed research, 142
planning with people, 163, 165
psychological construct, 150
public policy shifts, 138
quality of life, 138
reliability
construct validity, 155, 159
content validity, 156
criterion-related validity, 156, 158, 159
factor structure, 162, 163
group differentiation, 162
internal consistency, 151
interrater reliability, 154, 155
Index
970
Community-based service system (cont.)
limitation, 163
measurement, 159
multiple indices, 150, 151
reliability
content validity, 155, 156
scale reliability, 151
subscale intercorrelations, 162
testretest ndings, 151, 154
SIS-A, 149, 150
SIS-C, 150
SNAP, 149
social-ecological lens
instructional support, 141, 142
medical model, 139, 140
social-ecological model, 140, 141
support needs assessment, 148
support needs measurement, 148
Community living
advocacy efforts, 891
DSPs, 899
education and life long learning, 897
employment
Department of Justice activity, 896
mechanisms, 895
opportunities, 896
rate, 895
types, 895
vocational rehabilitation, 896
family caregivers, 898
home
estimation, 894
HCBS, 893
large state institutions, 894
residential and community supports, 893
self-direction, 894895
substantial changes, 893
outcomes, 900901
policy implications, 901
practice implications, 901
rights and protections, 891892
social and personal relationships, 896897
workforce implications, 902
workforce trends, 900
Community skills module, 234
Competing behavior model, 669
Complementary and alternative therapies
elimination diets (see Elimination diets)
HBOT (see Hyperbaric oxygen therapy (HBOT))
insomnia (see Insomnia)
nutritional supplements (see Nutritional supplements)
prevalence, 244
sensory integration treatment (see Sensory integration
treatment)
standard treatments, 243
THR/hippotherapy (see THR/hippotherapy)
working memory training (see Working memory
training)
Comprehensive transition models, 864865
Conrmatory factor analysis (CFA), 162
Constructive/functional activity engagement
D
Demand-side models
business organizations, 865
collaborative disability management, 866
comprehensive transition models, 868
disability employment, 865
federal programs, 866
integrated workforce models, 865
intensive internship models, 865
long-term employee development, 866
medicaid system, 866
multi-site company, 866
resource center models, 865
supported employment, 866, 868
SVRA, 868
Depression, 351
Depressive triad, 284
Developmental disabilities (DD), 33
Diagnostic and Statistical Manual of Mental Disorders,
493
Dialectical Behavioral Therapy (DBT), 284, 317. See
also Acceptance and Commitment Therapy
(ACT)
Differential reinforcement of alternative behavior (DRA),
659, 720
Differential reinforcement of incompatible behavior
(DRI), 659, 660
Differential reinforcement of other behavior (DRO), 659,
720, 761762
Direct support professionals (DSPs), 899
Discrimination skills
ABLA, 881
caregiver factors, 881, 882
negative responses, 880
planning, 882
tasks, 881
Down syndrome, 257, 272
Dyskinesia Identication System Condensed User Scale
(DISCUS), 362
E
Early intensive behavioral intervention (EIBI)
autism
ABA, 512
denition, 512
Index
IBI, 512
pivotal response treatment, 513
treatment characteristics, 513
broad learning/developmental impact, 514
child factors
early age, 525
level of functioning, 525, 527
childrens outcomes, 518
cognitive level, 519, 520
data-based treatment, 515
diagnostic severity, 520, 521
effect size, 517
efcacy studies, 518
evidence-based practices, 514
experimental design, 517
government-funded program, 519
initial age, 518
intensive treatment, 513
medical diagnoses/genetic conditions, 521
parents in programming, 515
peer development, 516
preschool years, 513
recommendations, 531
settings, 515
special education services, 516, 517
treatment quality
behavioral technology, 527, 528
curriculum, 528
expert supervision, 528, 529
frequency of supervision, 524
generalization, 530
home-based behavioral intervention, 523
individualization, 528
interdisciplinary consultation, 531
meta-analysis, 523
non-evidence-based practices, 530
parent involvement, 529
peers/inclusion, 530
settings, 529
standardized assessment data, 528
transition planning, 530
York measurement, 524
treatment quantity
intensity, 522, 527
therapy duration, 522, 523, 527
without ASD, 521
Eicosapentaenoic acid (EPA), 248
Eightfold path, 313
Electrocardiograph (ECG), 354
Electroconvulsive therapy (ECT), 351
Elimination diets
Feingold diet
ADHD, 244245
articial colors elimination, 245
Feingold association, 245
hyperkinesis-learning disability, 244
research results, 245246
salicylate foods, 245
GCFD, 247248
oligoantigenic/low allergy diet, 246247
971
Embedded constant time delay (CTD), 5254
Emergency telephone skills, 936937
Emotional Reactions o Challenging Behavior scale
(ERCB), 458
Environmental enrichment, 718
Essential fatty acids (EFAs), 248
Essential lifestyle planning (ELP), 144, 145
European diet, 245
Evidence-based assessment (EBA)
clinical outcomes, 55
cognitive functioning, 55
diagnosis, 57
evidence support, 56
screening, 56, 57
treatment monitoring, 58, 59
Evidence Based Practice Attitude Scale, 449
Evidence-based practices (EBPs)
academic and mental health outcomes, 42, 43
academic performance
clinical/educational settings, 52
embedded CTD, 5254
reciprocal teaching, 54, 55
systematic reviews, 52
caregivers, 2, 3
effectiveness, 4
intellectual and developmental disabilities, 4
quality of services, 5, 6
randomized controlled trials, 4, 5
research-based practice, 3
clinical utility aspects, 50
cognitive-behavioral theory, 49
decision making, 49
demographic characteristics, 51
design and test, 46
early childhood special education, 59, 60
EBA
clinical outcomes, 55
cognitive functioning, 55
diagnosis, 57
evidence support, 56
screening, 56, 57
treatment monitoring, 58, 59
effects, 50
feasibility and cost-effectiveness, 51
federal policies, 44
eld-based practitioners, 45
IDD
educators/clinicians, 52
single case designs, 51, 52
identication and implementation, 43
inclusive education, 61
individuals with disabilities, 42
key study features, 50
knowledge-base intervention, 43, 44
long-standing issues, 44
low-incidence disorder, 46
organizations/groups, 46
parameters, 48, 49
practitioner-characteristics, 48
prevention and intervention efforts, 44, 45
Index
972
Evidence-based practices (EBPs) (cont.)
professional development, 61, 62
QED, 49
RCT, 46
RE-AIM model, 47
science-to-practice gap, 43
social-ecological model, 48
statistical error rate, 49
systematic efforts, 45
Extrapyramidal Symptoms Rating Scale (ESRS), 354
F
Families attitudes
bureaucrats, 191
decision making, 191
general community, 192
parental attitudes, 192
share-home opening, 192193
subjective life quality, 192
Family caregivers, 334338
Feingold diet, 244246
Ferber technique, 817
Fetal alcohol spectrum disorder (FASD), 32
Fish oils, 249
Flexible attention, 318
Flexible fashion, 318
Folate (B9), 256257
Fragile X syndrome, 256
Functional analysis method
assessment and intervention, 124
behavioral inoculation skills, 125
behavior treatment, 124
preferred activities, 125
problem behavior, 124
training and workshops, 124
Functional assessment (FA)
automatic negative reinforcement, 70, 71
automatic positive reinforcement, 70
direct assessment
behavior-environment relations, 77
conditional probabilities, 74
environmentbehavior interactions, 74
functional relationship, 74
hypothesis, 74
limitation, 77
narrative recording, 73
scatterplots, 76
SDA, 75
functional analysis
alone condition, 81
antecedents and consequences, 82
attention test condition, 79
biological events, 90
brief analysis, 83
control/play condition, 81
environmental events and behavior, 78
escape condition, 80, 81
extended alone condition, 85
features, 79
Index
positive automatic reinforcement, 127
risk factor evaluation, 128
social attention, 126
tangible items, 126
treatment prevention, 128
G
Gamma amino butyric acid (GABA), 253, 260
Generalized anxiety disorder (GAD), 351
Gluten-/casein-free diet (GCFD, 247248
Good lives model (GLM), 796
Gross Motor Function Measure (GMFM), 266
Guideline Development Group (GDG), 350
H
Hamlet, 284
Health and wellness
cigarette smoking
epidemiology, 908
mindfulness, 913
probability, 913
reduction interventions, 914
Soles of the Feet, 913
etiology, 907
exercise and physical activity
clinical and research domain, 912, 913
exergaming, 912
Special Olympics participation, 912
sports performance, 912
THBI indicators, 912
interdisciplinary collaboration and consultation,
915916
intervention integrity, 916917
maintenance, 917918
medical compliance and adherence
boy intervention, 914, 915
compliance training, 914
dental procedures, 914
effective methods, 915
eye-glasses, 915
girl tolerate, 914
simulated sessions, 915
obesity
BMI, 909
epidemiology, 908
family-supported interventions, 909
mindfulness, 910
NAE, 909, 910
weight reduction, 910
prevalence markers, 909
primary prevention, 908
secondary prevention, 908
social validity, 917
specialty disciplines, 907
tertiary prevention, 907
Helping Behavior Scale, 458
High dose antipsychotics, 361
973
Home and Community Based Services (HCBS)
program, 893
Home Learning Program (HLP), 931
Homeostatically protected mood (HPMood), 179, 180
Home Safety Observation Inventory (HSOI), 930
Home skills module, 234
Hyperbaric oxygen therapy (HBOT)
developmental disabilities, 269, 270
SPECT scan, 269
Hyperkinesis-learning disability, 244, 245
Hypomania, 351
Hypothyroidism, 257
I
Imagery rehearsal therapy (IRT), 287
Imitation training, 832833
Inappropriate sexual behavior (ISB)
faux reassurance, 782
epidemiology
adult sexual offenders, 786
biological underpinning, 785
clinical follow-up study, 785
court appearances and convictions, 784
male sex offenders, 785
nonsexual offenders, 784
poor impulse control, 786
QACSO, 786
reanalysis of data, 785
sexual abuse, childhood =, 784
evidence based treatments
adaptive behavior, 797
anxiety, 804
APA task force, 788
aversion therapy, 789
cognitive behavior therapy, 790792
cognitive distortions, 794, 803
communications training and extinction, 789
criminal behavior, 786
depiction, 800
efcacious treatments, 787
features, 802
follow-up data, 793
follow-up period, 794
guidelines, 787
harm reduction, 795
large-scale reports, 793
masturbation, 789
personal index incidents, 800
principles, 801
psychological therapy, 787
QACSO, 797, 798
Qol/GLM, 803, 804
rape scale, 793
RCT, 787
real-life settings, 790
Russells pathway, 802
sexual assault, 798
sexual harassment, 800
Index
974
Inappropriate sexual behavior (ISB) (cont.)
sexual knowledge, 794, 798
signicant and inuential development, 789, 790
skill promotion, 794
social policy, 790
social validity, 790
socratic questioning, 803
translation, 796797
treatment reports, 795796
uncontrolled group interventions, 792793
victim empathy, 794
vigilante activity, 802
mental deciency, 781782
prevalence, 782784
The Incredible Years Parent Training program, 472
Incredible Years with DD modications (IYPT-DD), 481
Independent living skills module, 234
Individualized education program (IEP), 863
Insomnia
kava, 260
melatonin, 258
valerian, 259, 260
Institutional closure
Australian study, 199200
Broderick rule, 199
cross-sectional study, 199
longitudinal study, 199
Pennhurst study, 200
physical health and behavior, 201
resident status, 200201
staff attitudes, 201202
Intellectual and developmental disabilities (IDDs). See
Aggressive behavior
Intellectual disability (ID)
adaptive behavior, 22, 23
amentia/idiocy, 13
antisocial behavior, 15
application, 27
ASD, 32
Atkins v. Florida, 35
biological/environmental causes, 11
brain-based syndromes, 12
construct of intelligence, 26, 27
denition, 11
degree of severity, 12
dependent variable, 205206
developmental disabilities, 33
diagnostic overshadowing, 26
FASD, 32, 33
forensic issues, 34, 35
genetics, 30
Greek and Roman cultures, 13
Hall v. Florida, 35
heredity, 14
homeostasis theory, 204, 205
human intelligence, 29
inadequacy, 204
intelligence testing, 14
IQ ceilings, 24
IQ method
chronological age, 20
distorting effects, 22
executive functioning, 22
Flynn effect, 21
low-functioning subjects, 21
mental age, 19
problems with content, 21
problems with use, 21
ratio method, 20
standard deviation, 20
lifestyle satisfaction scale, 213
measurement, 204
negative eugenic experiments, 15
neurodevelopmental perspective, 31
neuroimaging, 30, 31
observations, 207
Observations on Cretinism, 13
PALS, 214
Pennhurst study, 204
PWI
GLS, 214
HPMood, 214
item wording, 214215
pretesting, 215
response choice, 215
QOLQ, 215216
risk unawareness, 29
self-determination, 2426
share-home vs. institutions, 207208
social incompetence, 28, 29
TaySachs disease, 14
in twentieth century, 1517
in twenty-rst century, 1719
Intelligence quotient (IQ)
ceilings, 24
chronological age, 20
distorting effects, 22
executive functioning, 22
Flynn effect, 21
low-functioning subjects, 21
mental age, 19
problems with content, 21
problems with use, 21
ratio method, 20
screening, 272
standard deviation, 20
Intensive behavioral intervention (IBI), 512
International Classication of Impairments, Disabilities,
and Handicaps (ICIDH), 563564
Interpersonal Synchrony (IS) group, 496
Inventory of Potential Communicative Acts (IPCA), 831
K
Kaiser-Permanente (K-P) diet. See Feingold diet
Knowledge questionnaire, 458
L
Lay therapists, 287
Learning disorders, 252, 253
Leisure skills
Index
activity schedules, 878
age appropriate activities, 878
animal therapy, 878
assessment, 883
barriers
discrimination (see Discrimination skills)
implementation, 879
individual factors, 880
residence, 879, 880
behavior problems, 873
benets, 873
clinical and research knowledge, 873, 874
competence, 873
denition, 871872
direct empirical promotion, 883
epidemiology, 874
observations and comparisons, 876
participation, 872
prerequisite skills
interviews, 877
items/preference assessments, 877
lego sets, 877
survey assessment tools, 878
types, 877
prompting methods, 883884
relevant empirical processes, 882
self-management, 879
social skills, 878, 879
staff and caregiver training
activity schedules, 885
behavioral skills training, 884
computer and technology, 885
task analyses, 884
survey information
at home, 875
physical activities, 875
social activities, 875
structured and unstructured activities, 875
Lifestyle satisfaction scale (LSS), 213
M
Magnesium, 253255
Mahayana, 312
Maternal folate status, 257
Matson Evaluation of the Drug Side Effects (MEDS),
362
Maudsley Prescribing Guidelines Guide, 350
MBCT. See Mindfulness-Based Cognitive Therapy
(MBCT)
MBIs. See Mindfulness-based interventions (MBIs)
MBSR. See Mindfulness-Based Stress Reduction
(MBSR)
McGill Action Planning Strategy (MAPS), 144
Meditation on the Soles of the Feet (SoF), 317
Melatonin, 258259
Mental and behavioral ill-health
adolescents IDDs
associated factors, 315
prevalence, 314
975
adults IDDs
associated factors, 315
prevalence, 314
prisoners, 315
problem behaviors, 315
psychopathology, 315
children IDDs
ambulatory mental health treatment, 315
associated factors, 315
prevalence, 314
Merycism. See Rumination
Microswitch-aided programs
ambulation, 391, 392
choice
preferred stimuli, 394
sound emissions, 394
stimulus samples, 394, 395
denition, 384
rst choice, preferred stimuli, 393
intervention outcomes
adaptive response, 405, 406
benecial effects, 406
choice, 406
control of environmental stimulation, 405
cost, 406
motivating/reinforcing environmental stimulation,
405
reducing problem postures/behavior, 406
upgrading, 406
optic microswitch, 384
reducing problem behavior/posture
hand engagement, 397
head and foot lifting, 396
motor impairment, 396, 397
spastic tetraparesis, 398
visual impairment/blindness, 396
SGD (see Speech-generating devices (SGDs))
stimulation control
chin- and lip-/mouth-movement responses, 387,
388
eyelid responses, 387, 389
forehead skin/eyebrow movements, 387, 389, 391
hand/arm movements, 387
hand-closure responses, 387
mouth-opening/closing movements, 387, 389, 390
sound-emission responses, 387
MIIs. See Mindfulness-incorporated interventions (MIIs)
Milieu therapy, 835836
Mindfulness
aggressive behavior, 742743
contemporary context, 312
meditation denition, 312
mindful caring (see Caregivers)
mindfulness-based interventions (see Mindfulnessbased interventions (MBIs))
origin, 312
self-help skills
MBIs, 316
MIIs, 316, 317
SoF meditation, 317
Index
976
Mindfulness (cont.)
traditional context
breath awareness, 314
eight fold path, 313
meditation, 313, 314
moral discipline group, 313
sampajanna, 313
sati, 312, 313
satipatthana, 313
wisdom group, 313
Mindfulness-Based Cognitive Therapy (MBCT), 284,
312, 317
Mindfulness-based interventions (MBIs)
content
aggressive behavior, 321
exercises, 329
meditation on SoF, 321, 329
mindful breathing and DBT core skills, 329
MOT, 329
physical well-being, 329
psychological well-being, 329
sexual behavior, 329
effects, 331332
future research, 341342
issues and challenges
active engagement, 340
commitment, 340
implementation, 340
modication, 341
teachers quality, 341
training IDDs, 340
mindfulness training
family caregivers, 334, 338
paid caregivers, 338, 339
objectives
behavioral well-being, 321
physical well-being, 321
psychological well-being, 321
participants, 321
perspectives
empiricalanalytical, 339
inclusion, 340
phenomenologicalexistential, 339
poststructural, 339
self-determination, 340
research design, 332
research methods, 332, 333
research quantity and effects, 333
strategies
caregivers, 331
content modications, 330
duration, 330
hand-over-hand modeling, 330
instructors, 331
language modications, 330
learning process modications, 330
material modications, 330
one-on-one training, 330
settings, 330
small group training, 330
teacher characteristics, 330
Mindfulness-based positive behavior support (MBPBS),
484
Mindfulness-Based Stress Reduction (MBSR), 312, 317,
329, 484
Mindfulness-incorporated interventions (MIIs), 316
Mindful Observation of Thoughts (MOT), 329
Modied Overt Aggression Scale (MOAS), 355
Monitoring of Side Effects Scale (MOSES), 362
Moral discipline, 313
MOT. See Mindful Observation of Thoughts (MOT)
Motivation Assessment Scale (MAS), 664, 665
MTHFR deciency, 257
N
National Institute of Health and Clinical Excellence
(NICE) guidelines, 350
Need of Support and Service Questionnaire (NSSQ), 149
Neuroleptic malignant syndrome (NMS), 363
Nisonger Child Behavior Rating form (NCBR-F), 355
Nonaversive behavioral support, 418419, 444
Noncontingent reinforcement (NCR), 111, 718, 739,
756758
Non-perseverative interests (NP), 496
North Carolina-Support Needs Assessment Prole
(NC-SNAP), 149
Nutritional supplements
folate (B9), 256, 257
magnesium, 254
omega-3 fatty acids
ADHD, 252
ASD, 252
daily intake, 249
DHA, 249
EFAs, 248
EPA, 249
fatty sh, 249
infant development, 250251
learning disorders, 252, 253
mental health disorders, 251
older adults, cognitive effects, 251
omega-6 s, 249
PUFAs, 248, 249
vitamin B6, 254, 255
vitamin B12, 255, 256
O
Obsessive compulsive disorder (OCD), 352
Ofce discipline referrals (ODRs), 433
Oligoantigenic (low allergy) diet, 246247
Opioids, 247
Optimism Pessimism Scale, 458
The Out-Of-Sync Child, 262
Overt Aggression Scale (OAS), 355
Index
P
Paid caregivers, 338339
Panic disorder, 352
Parent training
behavioral parent training programs, 473480
IYPT, 481, 482
mindfulness training, 484
PCIT, 483, 484
RUPP, 483
signposts for building better behaviour program,
482, 483
SSTP, 482
comorbidities, 486
evidence-based approaches, 486
family participation and engagement, 487
formats
group-based programs, 471
individually administered programs, 472
self-administered, 471
future research, 485, 486
logistical considerations, 487
mindfulness-based approaches
MBSR, 469, 470
mindful parenting interventions, 470
parental stress, 469
prevention and early intervention, 486
Parentchild dyads, 484
Parentchild Interaction Therapy (PCIT), 483, 484
Participation Index, 541
Pediatric Balance Scale, 266
Perseverative interests (PI) materials, 496
Personal Wellbeing Index (PWI), 208
GLS, 214
HPMood, 214
item wording, 214215
pretesting, 215
response choice, 215
Person-centered planning (PCP) processes
ambiguity, 142
assessment and planning process, 146
clinical practice, 142
collective evidence, 143
ELP, 144, 145
features, 143, 144
longitudinal study, 143
MAPS, 144
PATH, 145
PICTURE, 145, 146
positive changes, 143
systematic peer-reviewed research, 142
Phosphatidylserine, 252
Pica
assessment, 716717
behavior analysts, 724
Behavior Problem Inventory, 723
denition, 715
diagnosis, 715
interventions, 722723
977
practitioners, 724
prevalence, 716
short-term treatments
contingent aversive stimulation, 721722
contingent visual screening, 721
differential reinforcement, 720721
discrimination training, 722
environmental enrichment, 718
meta-analysis, 717
NCR, 718
overcorrection, 718719
physical restraint, 719720
response blocking, 720
topography, 715
Picture exchange communication system (PECS),
839841
Piper methysticum, 260
Pivotal response training (PRT), 496
Planning Alternative Tomorrows with Hope (PATH), 145
Polypharmacy, 360, 361
Polyunsaturated fatty acids (PUFAs), 248
Positive bedtime routines (PBR), 817
Positive behavior support (PBS)
vs.ABA, 443, 444
accountability, 424
aversive punishers, 417418
characteristics, 444
accountability, 424, 425
behavior, 421
comprehensive interventions, 421, 422
dening, 420
environmental design, 423, 424
safety, 425
teaching adaptive skills, 422, 423
values, 420, 421
current role
employment, 427, 428
families, 428, 429
infants and children, 429432
multicomponent interventions, 425
natural interventions, 426
target behavior, 426
deinstitutionalization, 416
functional assessment, 447
future, 435437, 462
importance of staffs, 445
long term focus, 448
nonaversive behavioral support, 444
and ABA, 418
challenges, 419
emergence, 418
research and practice, 419
normalization, 417
organization, 448
periodic service review, 448
proactive nature, 444
research, 462, 463
second generation training, 462
978
Positive behavior support (PBS) (cont.)
service users outcomes, 449
staff outcomes
attitudes, 449
attributions, 458
CCB, 460
condence, 458
emotions, 458
frequency of behavior, 460
helping behavior, 458
knowledge, 458
optimism, 458
quality of life, 460
quality of PBS training studies, 460462
service user studies, 459
skills, 458, 459
stakeholders, 448
SWPBIS (see Schoolwide Positive Behavior
Interventions and Supports (SWPBIS))
training objectives, 446, 447
training format, 446, 447
Poverty, 316
PraderWilli syndrome (PWS), 329, 349
Preference assessment
activities and interventions, 109
ASD, 101, 102
aversive stimulus assessments, 114, 115
clinical tool, 100
direct assessment
item interaction, 103
multiple stimulus approach, 107109
paired-stimulus approach, 105107
single-stimulus approach, 104, 105
systematic presentation, 104
false-negative outcome, 102
formal/informal interviews, 101
indirect assessment
ADHD, 103
caregivers, 103
CRSS, 102
low reliability and validity, 103
person-centered planning approach, 103
staff opinions, 102
types, 102
instructional context, 101
reinforcer assessment
concurrent-operant reinforcer assessment,
117, 118
direct/indirect evidence, 115
progressive ratio assessment, 118, 119
single-operant reinforcer assessment, 116, 117
representative items, 109112
routines/interventions, 100
self-determination, 100, 101
social interactions, 112114
Program for the Education and Enrichment of Relational
Skills (PEERS), 501502
Proloquo2Go software, 401
Psychiatric symptomatology, 315
Index
Psychopharmacology
psychotropic medications (see Psychotropic
medications)
schizophrenia (see Schizophrenia)
Psychotropic medications
adverse effects
AIMS, 362
Barnes Akathisia Rating Scale-Revised, 362
CLAMPS Abnormal Movement Scale, 362
cognitive effect, 363
DISCUS, 362
extrapyramidal, 362
MEDS, 362
metabolic syndrome, 363, 364
MOSES, 362
NMS, 363
Simpson Angus Scale for extrapyramidal side
effects, 362
tardive dyskinesia, 362
UKU, 362
antianxiety, 741
anticholinergic medications, 349
antidepressants, 740
antidepressants, new generation, 348
antipsychotic medications, 352, 353
antipsychotics, old generation, 348
aripiprazole, 358, 359, 740
beta-blockers, 742
circumstances, 349
general principles, 350
good-quality evidence, 744
high dose antipsychotics, 361
ID use of, 347
lithium, 349
mood stabilizers, 740
newer antipsychotic medications
clozapine, 359
olanzapine, 360
quetiapine, 360
ziprasidone, 360
non-medication-based management, 744
opioid antagonist, 741
polypharmacy, 360, 361
prole of, 348
psychostimulants, 742
public concern, 350
RCTs, 739
risperidone (see Risperidone)
SIB, 739
stabilizers/antiepileptic medications, 348
withdrawal studies, 361, 362
Public attitudes
replacement accommodation, 188
scant evidence, 188
share-homes
establishment, 191
issues and demographic diversity, 189
media coverage, 190
neighborhood opposition, 189
Index
neighborhood surveys, 191
normalization, 190
residential districts, 189
stereotypic views, 189
term community living, 190
violation, 190
stereotypic attitude, 188
PUFAs. See Polyunsaturated fatty acids (PUFAs)
Punitive child management strategies, 315
Q
Quality of life (QOL)
community
bonding and bridging, 195
denition, 194, 195
distinction, 196
misuse of, 196
principles, 197198
sense of community, 195
SWB and satisfaction, 195
neighborhood
ceteris paribus, 196
denition, 196
family and society, 196
integration, 194
non-integration, 194
social inclusion, 194
objective vs. subjective
contemporary ideas, 173174
early ideas, 171172
intellectual disability, 171
quality of living, 171
terminology, issues, 170171
Quality of Life Questionnaire (QOLQ), 215216, 460
Quasi-experimental design (QED), 49
Questionnaire on Attitudes Consistent with Sexual
Offences (QACSO), 786
Questions About Behavioral Function (QABF), 664
R
Randomized controlled trials (RCTs), 46, 352, 353
Rational Emotional Behavior Therapy (REBT), 284
ABC analysis, 285
assumptions, 284
Receptive-Expressive Emergent Language Test
(REEL), 830
Reciprocal teaching (RT), 54, 55
Relational frame theory (RFT), 318
Research Units in Pediatric Psychopharmacology
(RUPP), 483
Response interruption and redirection (RIRD), 761764
Rett syndrome, 257, 393
Risperidone
adult studies
ABC, 354
blood tests, 354
BPI, 354
CGI, 354
979
ECG, 354
ESRS, 354
MOAS, 355
multicenter trial, 354
OAS, 355
placebo treatment, 355
VAS, 354
washout period, 354
children studies
adverse effects, 356
CPT, 357
criticism, 357
CVLT, 357
extrapyramidal symptoms, 357, 358
high vs. low dose phases, 358
intention-to-treat basis, 357
intent-to-treat principle, 356
multicenter parallel design, 356, 357
NCBR-F, 355
open label design, 356
parallel design RCT, 357
placebo-controlled RCT, 358
weight gain, 356
withdrawals, 356
Role reversal, 292
Rumination
adolescents and adults, 702
antecedent interventions
component analysis, 701
experimental functional analysis, 701
food quantity, 690
limited evidence, 695
liquid rescheduling, 695
moderate evidence, 695
noncontingent access, 690, 695
satiation procedures, 694, 695
strong evidence, 694, 701
vomiting, 701, 702
consequence interventions
component analysis, 701
contingent electric shock, 698699
contingent presentation, 696697
differential reinforcement, 698
experimental functional analysis, 701
limited evidence, 696
moderate evidence, 696
music and verbal reprimand, 700
oral hygiene procedures, 697698
positive punishment and reinforcement, 699700
social attention, 700
strong evidence, 696, 700, 701
vomiting, 701, 702
denition, 685686
eating disorders, 677
epidemiology, 686
etiological variables, 703
history
adolescents, 678
consequence-based interventions, 685
highly neurotic family, 678
980
Rumination (cont.)
medical effects, 685
topographies, 678
measurement and reliability, 686687
meet evidence standards, 689, 690
nurturing therapy, 702
populations, 677
pre-treatment assessment
behavior analysis, 704
conditions, 705
intellectual disability, 705
QABF, 706
time-series analysis, 704
STEP, 703, 704
treatment assessment
data path, 707
meet evidence standards, 707
multiple baseline designs, 708
permitted development, 708
withdrawal design, 707, 708
treatment selection
contingent electric shock, 706
nonsocially mediated reinforcement, 707
oral hygiene, 706
punishment, 706
S
Safety Precautions Inventory (SPI), 930
Safety skills
accident prevention skills
HLP, 931
HSOI, 930
multiple exemplars, 930
multiple probe design, 930
self-instructional material, 931
SPI, 930
task analysis, 929
time delay procedure, 930
education-based training, 937
emergency telephone calls, 936937
epidemiology, 924925
fall-prevention skills, 931932
re safety skills
backward chaining, 927
development, 925
experimenter modeling, 927
feedback and reinforcement, 926
re alarm, 927
forward chaining procedure, 926
instruction and prompting, 926
knowledge, 927
maintenance program, 927
real-life situations, 925
role-playing, 925
step-by-step behaviors, 925
task analysis, 925
training program, 926
rst aid skills
adolescents, 928
CPR training, 929
Index
injury rates, 928
mouse calls, 928
peer and self-video modeling, 929
role-playing and practicing, 929
task analysis, 928
time-delay procedure, 929
gullibility and acquiescence, 924
maintainance, 938
pedestrian skills
classroom training, 933
community streets, 933
in vivo training, 933
independence training, 933
simulated model, 932
videotaping modeling, 934
predators, 923
prevention, 938
self-protective skills
lures of strangers, 935936
peer pressure, 936
sexual abuse, 934935
teaching, 937
vulnerability, 924
Sampajanna, 313
Sati, 313
Satipatthana, 313
Scales of Independent Behavior (SIB-R), 235236
Schema-Focused Therapy, 284
Schizophrenia
bipolar affective disorders, 351
depression, 351
GAD, 351
new and old antipsychotic medications, 350
OCD, 352
panic disorder, 352
School skills module, 234
Schoolwide Information System (SWIS), 434
Schoolwide Positive Behavior Interventions and
Supports (SWPBIS)
active decision making, 433
behavior theory and analysis., 432
evidence-based interventions, 433
instruction and intervention, 433
objectives, 432
prevention, 433
primary-tier
common discipline method, 434
effective error correction, 434
positive feedback, 434
relevant stakeholders of school, 434
selected schoolwide expectations, 434
secondary-tier interventions, 435
systems orientation, 433
tertiary-tier interventions, 435
usage, 432
Screening Tool of Feeding Problems (STEP), 703, 704
Selective serotonin reuptake inhibitors (SSRIs), 351
Self-determination
action-control beliefs, 567
agentic actions, 567
causal agency, 566
Index
characteristics, 566
civil rights legislation, 563
contextual factors, 564
denition, 565
development, 568
discrepancy reduction plan, 567
dispositional characteristic, 566
environmental factors, 564
goal-discrepancy problem, 567
goal generation process, 567
health condition factors, 564
human agentic behavior, 566
ICD-10, 564
ICIDH, 564
intellectual disability
Arcs Self-Determination Scale, 570, 571
ChoiceMaker Self-Determination Transition
Curriculum, 574
choice-making and choice opportunities, 568
community-based setting, 568
congregate living and working settings, 568
efcacy, 570
end-users, 573
follow-up study, 569
interventions, 571, 572
learning disabilities, 569
learning model, 575, 576, 579
metasynthesis, 570
Minnesota Self-Determination Scales, 571
next scheduled meeting, 574
past planning meetings, 573
positive correlation, 569
problem-solving process, 574
randomized-trial study, 570
self-instruction, 572
self-monitoring strategies, 573
self-regulation, 572
self-reinforcement, 573
student-directed learning strategies, 572
switching replication, 569, 570
TAKE CHARGE, 575
transition planning, 573
WFA process, 573
normalization principle, 562
personal factors, 564
person-environment t model, 565
positive psychology, 565
resources and strategies, 565
self-advocacy groups, 563
self-caused action, 566
self-help groups, 563
service delivery models, 562
social-ecological models, 564, 565
strengths-based approach, 563
volitional actions, 567
Self-Determined Career Development Model
(SDLMI), 579
Self-injurious behavior (SIB)
antecedent-based interventions
differential reinforcement, 662
981
environmental enrichment, 662
high probability instructional sequence, 657, 662
limited evidence, 656, 662
moderate evidence, 653
motivating operation based interventions, 656, 657
noncontingent delivery, 656
protective equipment, 657
reinforcers, 653
response blocking, 657
strong evidence, 653
conceptualizations, 663
consequence based interventions
differential reinforcement arrangements, 659662
DRA, 659
DRI, 659
DRO, 659, 660
environmental enrichment, 662
extinction based procedures, 661
high probability instructional sequence, 662
limited evidence, 660, 662
moderate evidence, 660
multicomponent interventions, 658
negative punishment, 661
noncontingent reinforcement, 662
positive punishment, 658661
response interruption, 661
strong evidence, 658
targeted behavior, 657
warning stimulus, 661
contingent/noncontingent protection, 663
denition, 637, 643
descriptive analysis, 665, 666
epidemiology, 643, 648, 649
etiology, 635
Evidence Standards Met/Evidence Standards Met
with Reservation, 649
functional analysis, 666668
history, 636, 637
indirect assessment, 664, 665
Meet Evidence Standards, 649
moderate evidence, 653
pre-treatment assessment, 663, 664
treatment efcacy, 649
treatment evaluation, 669
treatment selection, 668, 669
verbal behavior assessment, 668
Sensory Integration and Praxis Tests, 261
Sensory integration treatment
evolution, 261
general principles, 261
research in children
autism spectrum disorder, 264
intellectual disabilities, 263, 264
learning disabilities, 262, 263
sensory-based motor disability, 262
sensory discrimination disorder, 262
sensory modulation disorder, 262
treatment principles, 261
Service Need Assessment Prole (SNAP), 149
Sexual offending. See Inappropriate sexual behavior (ISB)
982
Sham diet, 245
Simpson Angus Scale, 362
Sleep disorders
in adults
Behavior Problems Inventory, 813
cognitive behavior therapy, 815
Down syndrome, 812
inadequate information, 812
light therapy, 815
melatonin, 816
multivariate analysis, 812
optimal sleep scheduling, 815
prevalence, 811
psychiatric and medical conditions, 812
psychotropic medication, 813
relaxation, 815
sleep hygiene, 815
stimulus control, 815
variables, 811
visual impairment, 812
in children
behavior intervention techniques, 819
CRM, 817
environmental factors, 818
extinction, 816
faded bedtime, 818
graduated extinction, 817
melatonin, 816
PBR, 817
prevalence and factors, 810811
scheduled awakenings, 817
sleep hygiene, 818
sleep-promoting, 818
white noise, 819
DSM-5, 809
sleep problems, 813814
Social skills
adolescence
goals of groups, 501
intervention package, 503
PEERS, 502
practice recommendations, 503, 504
prompts, 503
sessions, 502
social phrases, 503
treatment group vs. the control group, 502
adulthood
choice-making opportunities, 505
independence, 504
intervention strategy, 504
practice recommendations, 506
problem-solving intervention, 505
problem-solving technique, 505
workplace, 504
decits in children, 493
denition, 493
early childhood
joint attention, 494, 495
joint engagement, 495497
Index
practice recommendations, 497
social engagement, 495497
importance, 506
school age children
communicative acts, 500
multiword phrases, 499
observational learning, 498
peer modeling clip, 498
play and leisure activities, 499
practice recommendations, 500, 501
social clubs, 500
social stories and role-play, 499
story describing, 499
targeted social behaviors, 498
token economy system, 499
video modeling, 498
Southern California Post-Rotatory Nystagmus Test, 261
Southern California Sensory Integration Tests, 261
Speech-generating devices (SGDs), 841843
active communication
environment interest and stimuli, 400
ve activities, 401
iPod/iPad touch, 401, 402
simple technology and programs, 400
using the device, 400
caregiver attention, 398400
intervention outcomes
avoiding isolation, 406
caregiver commitment, 407
successful communication, 407
Spillover effect, 484
Stepping Stones Triple P (SSTP), 482
Stereotypy
antecedent interventions
limited/no evidence, 760
moderate evidence, 758760
punishment procedures, 765, 766
strong evidence, 756758
treatment evaluation, 765
vocal/motor stereotypy, 764, 765
characteristics, 751
consequent interventions
denition, 760
DRO, 761762
moderate evidence, 761
punishment procedures, 765, 766
response cost and time out, 764
RIRD, 762764
strong evidence, 760761
treatment evaluation, 765
vocal/motor stereotypy, 764, 765
denitions, 751
empirical support, 754
epidemiology
ASD, 753
behavioral interpretation, 753, 754
neurobiological interpretation, 754
typical development, 753
innocuous behaviors, 752
Index
MSWO method, 755
self-injurious behaviors, 752
treatment assessment
components, 769, 770
preference, 768769
repetitive behaviors, 768
RIRD, 762764
SCED, 769
treatment selection, 766768
Stereotypy behavior, 315
Structured descriptive assessments (SDA), 75, 76
Subjective well-being (SWB)
acquiescence, 211
comparability, 210211
data, 174
deinstitutionalization
accommodation, 186
age-appropriate perspective, 187
driving force, 198
families attitudes, 203204 (see also Families
attitudes)
institutional closure (see Institutional closure)
intellectual disability (see Intellectual disability
(ID))
legislation, 186
motivation, 186
neighborhood, relevance, 202203
normalization principle, 186187, 198
objective life, 198199
PASS instrument, 203
public attitudes (see Public attitudes)
rights interpretation, 187
social role valorization, 187
depiction model, 177179
domain compensation, 181
domains, 208209
external buffers, 180
homeostasis defending
Core Affect, 179
HPMood, 179, 180
Russells description, 179
satisfaction, 179
trade-off, 180
institutions
characteristics, 185186
historical perspectives, 183185
internal buffers
automatic processes, 180181
cognitive, 181182
neighborhood, relevance, 202203
predictions, 182183
proxy responding
caregivers and researchers, 212
children and adolescents, 212
instruments, 212
internal scale reliability, 212
quotations, 212
self-report data, 212
set points, 175177
983
stability, 174175
Substance use disorders (SUD)
abuse of, 957
alcohol and illicit drug
intervention, 960961
prevalence, 958959
biomedical markers, 963
case identication, 962
cross-system collaboration, 962963
dual diagnosis, 964
epidemiology, 959
evidence-based, 961962
meta-data, 959
screening and assessment, 964
tobacco
intervention, 959961
prevalence, 958
triple diagnosis, 963
Supports Intensity Scale
Adult Version (SIS-A), 149, 150
Childrens Version (SIS-C), 150
Synthetic melatonin, 258
T
Telehealth
applied behavior analysis, 603, 604
BBS outpatient, 586
behavior consultants, 605
clinic-to-clinic model
behavioral assessment and treatment
procedures, 594
benets, 590, 591
capability to control camera, 591
challenges, 591
child sensitivity, 591
daily behavior record, 590
functional analysis, 590
immediate feedback, 591
large-scale procedures, 588
Mels rst telehealth appointment, 592
multielement design, 594
number of sessions, 591
parent assistants, 589
parent meeting, 589
parent training, 589
preference assessment, 590
self-injurious behavior, 592, 593
service delivery models, 606, 607
videoconferencing capabilities, 588, 589
clinic-to-home model
benets, 595
case studies, 597600
challenges, 596
child sensitivity, 597
equipments, 594
FCT, 595
functional analysis, 595
immediate feedback, 597
Index
984
Telehealth (cont.)
information technology, 597
outcomes, 600
parent meeting, 595
participants, 594
preparation, 596
service delivery models, 606, 607
sessions, 597
Skype connection, 595
combat environments, 603
emergency room, 602
evidence-based practices, 603
home-based services, 586
initial technology meeting, 610
internet service plans and connections, 608
limited telehealth services, 587, 588
peer-reviewed articles, 602
real-time coaching and feedback, 604
recommendations, 606, 608
screening/consultation, 602
speech, language, and hearing screening, 603
telehealth visits, 610, 611
Theravada, 312
THR/hippotherapy
autism, 267
cerebral palsy, 266
simulated, 268
Toilet training
Azrin and Foxx technique, 944
bowel elimination, 944
briefs, using, 949, 950
characteristics of studies, 945947
conditioned-response technique, 943
overcorrection, 950, 951
overhydration, 948
reinforcement, 951, 952
response restriction, 951
scheduled toileting, 945
stimulus-response (S-R) paradigm, 944
strategies, 943
toileting difculties, 943
wetness alarm, 948, 949
WWC standards, 944
Transcutaneous electrical nerve stimulation (TENS), 658
U
Udvalg for Kliniske Undersgelser (UKU) scale, 362
V
Valerian, 259260
Valeriana, 259
Velo-cardio-facial syndrome (VCFS), 349
VerBAS, 828
Vineland Adaptive Behavior Scales, 403
Visual Analogue Scale (VAS), 354
Vitamin B6, 253255
Vitamin B12, 255256
Vocational skills module, 234
Vocational training
education and training, 855
employer and community attitudes, 854
epidemiology, 851853
federal benets, 854
federal laws, 855
job placement and employment, 855
local community, 855
low expectations, 854
Marriott Bridges
comprehensive transition models, 864865
employer-based approach (see Demand-side
models)
evidence base, 862
IEP, 863
interagency linkages, 863
partnerships, 862
transition services, 863
medicaid, 854
personal supports, 855
Project SEARCH
evidence base, 862
high school transition model, 860
intensive staff training, 861
job placement, 861, 862
ongoing support services, 861
sheltered workshops, 857
SSA, 853
supported employment
characteristics, 858
federal law, 858859
US Department of Labor, 858
youth characteristics and work experience, 853
Voice output communication aids (VOCAs), 841843.
See also Speech-generating devices (SGDs)
W
Webster-Strattons Incredible Years series, 481
Wetness alarm, 948, 949, 952
What Works Clearinghouse (WWC) standards, 944
Williams syndrome (WS), 329, 349
Working memory training
Cog-Med, 270
research
ADHD, 270, 271
developmental disabilities, 271
intellectual disabilities, 271, 272