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Research and Practice in Intellectual

and Developmental Disabilities
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What it Means to have Complex

Communication Needs
a

Teresa Iacono
a

Living with Disability Research Group, La Trobe University,

Bendigo, Australia
Published online: 27 May 2014.

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To cite this article: Teresa Iacono (2014) What it Means to have Complex Communication
Needs, Research and Practice in Intellectual and Developmental Disabilities, 1:1, 82-85, DOI:
10.1080/23297018.2014.908814
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Research and Practice in Intellectual and Developmental Disabilities, 2014

Vol. 1, No. 1, 8285, http://dx.doi.org/10.1080/23297018.2014.908814

COMMENTARY
What it Means to have Complex Communication Needs
Teresa Iacono*
Living with Disability Research Group, La Trobe University, Bendigo, Australia

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(Accepted 23 March 2014)

The Dignity for Disability Party is a human rights political party in Australia whose
leader, Kelly Vincent, won a seat in the parliamentary Legislative Council in the South
Australian state election of 2010. This state representation has provided opportunities to
advocate for the rights of people with diverse disabilities at policy level. In announcing a
policy of legal system reform in South Australia, a focus was placed on the particular vulnerability of people with complex communication needs (Vincent, 2014). Understanding
the extent of their vulnerability, or the strategies the party has suggested, calls for an
exploration of what it means to have complex communication needs.
Before considering what may be different for people with disabilities, it is worth considering the complexity of everyones communication needs.
Certainly, as I sit here with my family of communication devices smart phone, Internet-enabled tablet, laptop computer connected to a monitor and keyboard, to meet my
ergonomic needs and failing vision complex seems an appropriate description.
The difference between what is complex for me versus for people with disabilities is
that on a day-to-day basis I can get my message across, at least most of the time. Other
than asking for the occasional information technology support, I am pretty independent
and the consequences of communication breakdowns are unlikely to be life-threatening.
For people with disabilities, the consequences of not being able to speak or not being
understood are far-reaching and often serious. Their complex communication needs
require urgent attention.
For people with cerebral palsy, for example, speaking may be a real struggle. Providing them with a communication device, such as one that involves typing what they want
to say, then hitting a button to speak it aloud may solve the problem. An electronic communication device does just that for many whose disability is mostly physical. However,
they do still need the people they are trying to communicate with to hang around without speaking themselves and interrupting their concentration or switching the topic.
No matter how whiz bang a communication device may be, creating the message
takes time much longer than it takes to speak the same number of words, sentences, or
paragraphs. Many people are not patient or comfortable enough with the silence.
People with disabilities may also have to deal with an almost natural tendency for
others to speak to them loudly or in childlike fashion. Perhaps they assume that loud is

*Correspondence to: Professor Teresa Iacono, Head, La Trobe Rural Health School, Faculty of
Health Sciences, La Trobe University, PO Box 199, Bendigo, Victoria 3552, Australia. Tel: 61 3
5448 9110. Email: t.iacono@latrobe.edu.au
2014 Australasian Society for Intellectual Disability

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Research and Practice in Intellectual and Developmental Disabilities

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easier to understand for a person who, because they dont speak, obviously must have
limited intellect.
Some people do have intellectual disabilities that may or may not be associated with a
physical disability or autism. They may also have a hearing or vision impairment. Such is
the unfair nature of disability that they often come in multiples.
As the complexity of the disability increases, so does the complexity of communication needs and of finding an alternative system; and people with disabilities must also
rely on the skills of others to help them to be a part of a conversation.
There is a whole science around meeting complex communication needs through the
use of augmentative and alternative communication. Speech pathologists, occupational
therapists, and special educators may be well versed in augmentative and alternative communication, or at least aspects of it. Augmentative and alternative communication systems are diverse, including sign language, letter or communication boards or books,
small message cards, basic or complex electronic devices, and mainstream tablets with
communication Apps (Iacono, Lyon, & West, 2011).
Matching a persons specific needs to the augmentative and alternative communication system is part of the science. People with intellectual disabilities can learn to use key
word signs (Bloomberg, West, & Johnson, 2004), but the number of signs they can
remember will partly depend on how readily they learn new information and remember it.
Letter boards can give a person the ability to say whatever they want, but only if the
person can spell. Pictures provide a useful alternative if one cannot spell. Imagine,
though, having to decide from the 30,000 or so words used across conversations the ones
you want placed on your communication board depicted by a picture. Then think about
carrying that board around with you wherever you go.
Electronic communication devices can take many forms, from computers designed
specifically for people with disabilities to the ubiquitous tablets and other personal devices. They provide powerful tools to overcome the problems of having only a few words
available.
There is a belief that electronic devices are preferable to non-electronic books or
boards. Certainly, Stephen Hawking (Stephen Hawking the official website, n.d.) demonstrates what can be achieved using an electronic device, despite having a significant physical disability. However, my own research (Iacono, Lyon, Johnson, & West, 2013) has
shown that some find simpler non-electronic systems, such as letters placed on the outside
of an e-tran (i.e., a transparent frame), more personable and therefore preferable. One reason is that they require the person they are communicating with to work closely with
them by watching their gaze.
Other reasons non-electronic devices are often preferred include not having to worry
about the battery dying suddenly or protecting the device from damage. Imagine the frustration of the speech synthesis failing just when you are about to hurl obscenities at the
opposing team during a football grand final game, or having the device smashed in the
crush of fans.
So, there is a range of options for people with complex communication needs in the
form of various augmentative and alternative communication systems. This speaks to the
reasonable adjustment included in the Dignity for Disability policy reform of having
access to communication aids. However, one potential barrier is their availability.
In Australia, there is some funding for communication devices, and even for adults to
obtain non-electronic aids in Victoria only (Iacono et al., 2011). However, once a person gets a device, there is little if any public funding to help adults with disabilities to
learn to program or use these devices. The National Disability Insurance Scheme (NDIS)

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84

T. Iacono

promises to go some way to addressing this problem, at least for those people who are
assessed as requiring therapy services.
Of course, having a communication aid is only part of what is needed to communicate
if you do have complex communication needs. It seems like stating the obvious to say
that communication is at least a two-way process, but for people with disabilities it is also
a two-way effort.
The policy of legal reform announced by the Dignity for Disability party also includes
that people with complex communication needs be supported by people who can assist
with the communication process.
The communication support needed may be relatively straightforward, such as asking
questions, using simple but not childlike language, checking for understanding of the
question, allowing the person the time to answer, then checking that the answer has been
understood. Depending on the communication system used, the person assisting may also
need to be able to understand signs, or closely observe and record the persons selections
of letters, words, or pictures. More skilled assistance may be in the form of helping the
person to construct the message without taking over to the extent that it is unclear as to
whose message it is the person with the disability or the person assisting?
These examples of reasonable adjustments are required of all mainstream services,
including healthcare, education, employment, and housing, as well as legal services.
The NDIS aims to strengthen these systems to include people with disability (NDIS, n.d.).
However, this stated aim is far from simple to achieve. There is a significant problem
with unequal treatments within mainstream systems of people with disabilities, especially
those with complex communication needs.
Take hospitals, for example. In the United Kingdom, reports have brought to light
serious adverse events, including death, for people with intellectual disabilities and complex communication needs (Mencap, 2007, 2012). Reading these accounts makes clear
serious communication failures between hospital staff and these patients and their families, with dire consequences of delays or failures in diagnosis and treatment. Unfortunately, there is evidence of similar problems within the Australian hospital system
(Iacono & Davis, 2003; Webber, Bowers, & Bigby, 2010).
Coming back to the initial question of the meaning of complex communication needs
well, it is complex. That is the easy answer. More difficult to answer is why people with
complex communication needs, and with disabilities more broadly, are treated so unequally
in society and within various service systems.
Policies such as that of the Dignity for Disability party go a long way towards tackling
this inequity by describing some reasonable adjustments for people with complex communication needs. It is one mainstream system, and it is a start.

References
Bloomberg, K., West, D., & Johnson, H. (2004). InterAACtion: Strategies for intentional and unintentional communicators. Melbourne, Victoria: Scope.
Iacono, T., & Davis, R. (2003). The experiences of people with developmental disability in Emergency Departments and hospital wards. Research in Developmental Disabilities, 24(4), 247
264. doi: S0891422203000416 [pii]
Iacono, T., Lyon, K., Johnson, H., West, D. (2013). Experiences of adults with complex communication needs receiving and using low tech AAC: An Australian perspective. Disability and
Rehabilitation: Assistive Technology, 8(5), 392401. doi: 10.3109/17483107.2013.769122).

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Research and Practice in Intellectual and Developmental Disabilities

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Iacono, T., Lyon, K., & West, D. (2011). Non-electronic communication aids for people with
complex communication needs. International Journal of Speech-Language Pathology, 13(5),
399410. doi: 10.3109/17549507.2011.482162.
Mencap. (2007). Death by indifference: Following up the Treat Me Right! Report. London:
Mencap.
Mencap. (2012). Death by indifference: 74 deaths and counting, a progress report 5 years on.
London: Mencap.
National Disability Insurance Scheme. (n.d.). The NDIS and mainstream services. Available at: http://www.
ndis.gov.au/sites/default/files/documents/fact_sheet_how_ndis_works_other_mainstream_systems.pdf
(accessed 1 March, 2014).
Stephen Hawking the official website. (n.d.). Available at: http://www.hawking.org.uk/ (accessed
on 1 March, 2014).
Vincent, K. (2014). Equal before the law: d4d announces justice policy [Press release]. Available at:
https://m.facebook.com/story.php?story_fbid=746553415368654&id=126449547379047
(Accessed 22 March 2014).
Webber, R., Bowers, B., & Bigby, C. (2010). Hospital experiences of older people with intellectual
disability: responses of group home staff and family members. Journal of Intellectual & Developmental Disability, 35(3), 155164. doi: 10.3109/13668250.2010.491071.