Small chronical of the

caregivers conferences/ caregiversday

1.
2005 - 2006 IPWSO President
2004 - 2008
 Small chronical of the
caregivers conferences/ caregiversday

Pam
Eisen

IPWSO
Conference
in Cluj

1. 2.
2005 - 2006 2006 - 2007
 Small chronical of the
caregivers conferences/ caregiversday
IPWSO
Pam Conference
Eisen in Cluj

First Caregivers´
conference in
Herne, Germany,
2008

1. 2. 3.
2005 - 2006 2006 - 2007 2008
 Small chronic of the
caregivers conferences/ caregiversday
First Caregivers´
IPWSO conference in
Pam Conference Herne, Germany,
Eisen in Cluj 2008

1. 2. 3. 4. Caregivers´
conference in
2005 - 2006 2006 - 2007 2008 2009
Herne, Germany,
2009
 Small chronic of the
caregivers conferences/ caregiversday
First Caregivers´ Caregivers´
IPWSO Caregivers day
conference in conference in
Pam Conference in Taiwan
Herne, Germany, Herne, Germany,
Eisen in Cluj 2008 2009

1. 2. 3. 4. 5.
2005 - 2006 2006 - 2007 2008 2009 2010
 The caregivers day in Taiwan had
two Parts

I. Examples

II. Standards and Guidelines

 I. Examples
1. Presentation of an Example of Living
2. Presentation of an Example of Living
3. Presentation of an Example of Living
4. Presentation of an Example of Living
- Jackie Mallow (USA
- Lisa Boman (Sweden)
- Yoshiro Kato, Hitomi Furukawa,
Takayuki Kido, Yasunobu
Yamada (Japan)
- Norbert Hödebeck-Stuntebeck
(Germany)

5. Presentation of an Example of Work - Patrice Carroll (USA)

6. Presentation of an Example of Work - Hubert Soyer (Germany)

7. Presentation of an Example of Therapy The Norwegian Model

– Marianne Lindmark (Norway)
8. Presentation of an Example of Therapy Language Therapy & Development
- Larry Genstil (Israel)
 II. Standards and Guidelines
1. Environmental Structure of Living - Mary K. Ziccardi (USA)
2. Interpersonal Relationships - Janice Forster (USA)
3. Communication between Parents & Caregivers
- Jackie Mallow
(USA)
4. Fitness – Sports – Motivation - Georgina Loughnan
(Australia)
5. Environmental Structure of Work - Marguerite Rupnow
(USA)
6. Neuropsychological & Cognitive Aspects of Behavior
Management - Hubert Soyer
(Germany)
7. Behavior Management - Norbert Hödebeck-
Stuntebeck (Germany)
8. Training for Teachers - B.J. Goff (USA)
1. Environmental Structure of Living
The shared experiences of professional
caregivers demonstrate that individuals with
PWS are significantly healthier and
successful when living in a specialized living
environment.
Including:
• Food security
• Diet and exercise
• Schedules and routines
• Meaningful work and activities
• Community integration
• Competent and committed staff
 2. Interpersonal Relationships
• Relationships between:
 Individual to Individual
 Individual to Caregiver
 Individual to Family
 Individual to Pets
 Individual to Community

The work group explored the capacity for and the

nature of these relationships
The group determined that relationships need to be
managed because they can be stressful
Keys: help to establish boundaries, manage social
environment, recognize need for teams to provide
support
 3. Communication Between
Professional Caregivers and
Parents
The relationship between the family of the
individual with PWS and professional caregivers
should be on mutual respect and trust
Establish by:
 Managing expectations from start
 Don’t blame
 Identify problems and seek solutions
 Respond to questions and concerns promptly
 Accept mistakes and seek solutions
 4. Fitness - Sports - Motivation

• Establish medical baseline (including

medical conditions present)
• Each individual should have plan to meet
their capability while striving for optimal
fitness
• Daily routine, use equipment
• Important for professional caregivers to
participate and motivate, and set an
example
 5. Environmental Structure of Work
Typical work providers do not understand the uniqueness
of PWS and the supports necessary for individuals to be
successful
 “Adapt work to people not people to work”
 Food security
 Provide work opportunities that explore the individual’s
highest potential of ability
 Securing and maintaining meaningful work continues to
be a challenge for the International PWS community
 It is imperative that people have the opportunity for
meaningful work services
 5. behavior management

Develeopment of a problematic behavior

2. Prevention

3. Handling

4. Reflection

1. Feeling of the
caregiver
 7. Neuropsychology
 Individuals with PWS have certain cognitive
strengths and vulnerabilities
 Intervene as early as possible to diminish
impairment
 Continue to stimulate into adulthood in daily life -
diary, shopping lists, parlor and computer games
 Not all is determined by genetics, we can help
develop brain functioning
 Knowledge of relationship between genetics and
environment is key to maximizing potential
 8. Training for Teachers
• Have education plan but accept the individuality
of learning styles
• Major concern for teachers is behavior
management
• Training manual necessary as a practical tool for
schools but this is not to replace face to face
training
• Schools need to adapt to the specialized needs
of the individual -visual schedule, shorter
assignments, food security, …
More Details and Guidelines
Available
 Small chronic of the
caregivers conferences/ caregiversday
First Caregivers´ Caregivers´ Caregivers day
IPWSO conference in conference in in Taiwan
Pam Conference Herne, Germany, Herne, Germany,
Eisen in Cluj 2010
2008 2009

1. 2. 3. 4. 5.
2005 - 2006 2006 - 2007 2008 2010

6. Caregivers Caregivers day during

conference 2012 the IPWSO conference 2013
 Main goals of the caregivers
conferences:
• Share knowledge
• Develop a network of knowledge

Parents Caregivers

Scientifics
 Main goals of the caregivers
conferences:
• Share knowledge
• Develop a network of knowledge

Parents Caregivers

Scientifics
 Main goals of the caregivers
conferences:
• Share knowledge
• Develop a network of knowledge

Caregivers
Parents

Scientifics
IPWSO President
2004 - 2008