Presentation given by Dr Hubert Soyer at the Prader-Willi Association Ireland Annual Conference 2014. For more details, see http://pwsai.ie/annual-conference-2014/

1. OVERVIEW OF SUPPORTED LIVING FOR ADULTS WITH PWS IN GERMANY
Dr. Hubert Soyer, Regens Wagner Absberg

2. Thank you for your invitation
Germany
approx. 80 Mio. Inhabitants
6.000 – 8.000 people with PWS
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3. Offers for supported living for adults with PWS in Germany
I.Group homes
II.Apartments
III.Living in families with special support
IV.Normal group homes with special support
V.Sheltered workshops
VI.„normal“ job
VII.Living and occupational therapy in one place
VIII.Medical center of genetics, endocrinology and nutrition
IX.Support for parents/families
X.Rehabilitation clinics with special PWS treatments
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4. 4
Overview about
special offers for
PWS in German
13 Providers
about 27 locations
about 400 places

5. Assisting people with Prader-Willi Syndrome
Psyche
Soma
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6. body height
tireness
weight
self-confidence
body consciousness
vulnerability for psychotic disorders
Assisting people with Prader-Willi Syndrome
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7. Best Practice Guidelines
For Standard of Care in PWS
Workshop participants easily agreed on many aspects of environmental supports and controls. These areas are summarized in the group’s recommendations…..
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8. All of the guidelines support the completion of an individual assessment to assure health and safety and to promote a quality of life.
1.Individual’s opinions and preferences
2.PWS specific environment
3.Appropriate supervision
4.Availability of additional support
5.Consistent and predictable routines
6.House rules and security
7.Community Inclusion
8. Individualized Behavior Support Plans
9. Trained caregivers
10. Healthy relationships with family members
11. Communication structures within the family
12. Comprehensive medical services
13. Choices
14. Effective communication system among the entire team
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9. With all of the guidelines, it was agreed that the individual’s opinions and preferences should be strongly considered, whenever possible. However, health and safety remains of primary importance.
1. Individual’s opinions and preferences
2. PWS specific environment
A PWS-specific environment is strongly recommended.
This includes home-like furnishings, space for group activities and personal space (for example, bedrooms for one).
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10. Appropriate supervision by caregivers who understand the needs of people with PWS is critical. Supervision may be by direct caregiver support, alarms, security systems, or a combination of all the above. Supervision must be available 24 hours each day.
3. Appropriate supervision
4. Availability of additional support
Availability of additional support must be in place for emergency medical or behavioral needs. This should allow for quick assistance to help keep everyone safe.
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11. Routine and consistency is essential to successful living for a person with PWS. This includes structured meals that are planned, monitored, and served consistently. This also includes exercise as part of every person’s daily schedule.
5. Consistent and predictable routines
6. House rules and security
Structure for living includes house rules and security of items which may be tempting. House rules help everyone to understand and be consistent with the guidelines and expectations needed to live with others. Items such as food, money, and medications should be locked and managed by caregivers.
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12. Community inclusion is important for everyone’s self esteem and need to belong. These can include relationships with neighbors, places to worship, and other community events.
7. Community Inclusion
8. Individualized Behavior Support Plans
It is essential to have individualized Behavior Support Plans, ranging from positive reinforcement strategies to crisis management. These plans will provide consistent support of the person’s needs, and are used to avoid, re-direct, or respond to a crisis.
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13. Training of caregivers is key to the success of the individual with PWS. Caregivers need a good understanding of the complexity of the needs of the syndrome as well as the compassion that is needed when supporting a person with PWS.
9. Trained caregivers
10. Healthy relationships with family members
Healthy relationships with family members is important to the success of a person with PWS.
Family contact and ongoing involvement may require additional support and guidance from caregivers. Teaching relationship building skills and on-going counseling may be needed.
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14. Developing a healthy communication structure between the person with PWS, their family, and the caregivers is critical. These communications are most effective if they are team-based and have established boundaries.
11. Communication structures within the family
12. Comprehensive medical services
Due to the potential for life-threatening situations, it is imperative to create an environmental structure that allows access to comprehensive medical services.
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15. To support self determination as it relates to environmental structures, choices should be offered to assist the person to individualize their room, while promoting personal safety.
13. Choices
14. Effective communication system among the
entire team
An effective communication system among all team members is important. This can include an established method of communication and a system of exchanging information that works for everyone.
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16. Focus on pedagogical-psychological treatment
•Structuring the environment
•Expansion of social competences
•Expansion of self-control
•Reduction of inner-psychic-disorder
•Enhancement of quality of life and weight situation and reduction of behavior problems
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17. Supported living
Crisis inter- vention
Information
Case- management
Workshops
Support in family
Consulting
Structured environment
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18. Environment =
the circumstances, objects or conditions
by which one is surrounded
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19. Child PWS
Other children
Father
Caregiver
Micro- systems
Institutions
Cultural norms
Laws
Job market
Mother
Working- place
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20. States Parties shall take effective and appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life. To that end, States Parties shall organize, strengthen and extend comprehensive habilitation and rehabilitation services and programs, particularly in the areas of health, employment, education and social services, in such a way that these services and programs:
Begin at the earliest possible stage, and are based on the multidisciplinary assessment of individual needs and strengths;
Support participation and inclusion in the community and all aspects of society, are voluntary, and are available to persons with disabilities as close as possible to their own communities, including in rural areas.
Article 26 Habilitation and rehabilitation
Convention on the Rights of Persons with Disabilities
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22. 22

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24. 24

25. 25
Kerstin
37 years old
Living at Regens Wagner since 1999
Florian
28 years old
Living at Regens Wagner since 2003

26. 26
Karin
32 years old
Living at Regens Wagner since 2005
Andreas
30 years old
Living at Regens Wagner since 2004

27. 27
Sonja
27 years old
Living at Regens Wagner since 2008
Jürgen
48 years old
Living at Regens Wagner since 1998

28. 28
Eric
39 years old
Living at Regens Wagner since 2009
Martina
39 years old
Living at Regens Wagner since 2012

29. Support in shopping
Support in solving conflicts
Making rules on their own
Private room
Many caregivers
Compliance for PWS
No penalties
Strict rules for eating and drinking
Many contacts and free space
Common meals and activities
Organizing life on their own
Silence and peace
Holidays and travelling
Privacy
Having own furnitures
Peergroup
Learn from each other
Secure environment
Supported living
Needs and wishes of people with PWS
Independent living
Support in managing money

30. Thank you!
Congratulations