OVERVIEW OF

SUPPORTED LIVING FOR

ADULTS WITH PWS IN

GERMANY

Dr. Hubert Soyer, Regens Wagner Absberg

Thank you for

your invitation

Germany approx. 80 Mio. Inhabitants

6.000 – 8.000 people with

PWS

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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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Overview about

special offers for

PWS in German

13 Providers

about 27 locations

about 400 places

Assisting people with Prader-Willi

Syndrome

Psyche Soma

5

body height

tireness

weight self-confidence

body

consciousness

vulnerability for

psychotic

disorders

Assisting people with Prader-Willi

Syndrome

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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….. 7

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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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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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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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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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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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. 13

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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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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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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Supported

living

Crisis inter-

vention

Information Case-

management

Workshops

Support in

family Consulting

Structured

environment

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Environment =

the circumstances, objects or conditions

by which one is surrounded

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Child

PWS

Other

children

Father

Caregiver

Micro-

systems

Institutions

Cultural

norms

Laws

Job market

Mother

Working-

place

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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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Kerstin 37 years old Living at Regens Wagner since 1999

Florian 28 years old Living at Regens Wagner since 2003

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Karin 32 years old Living at Regens Wagner since 2005

Andreas 30 years old Living at Regens Wagner since 2004

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Sonja 27 years old Living at Regens Wagner since 2008

Jürgen 48 years old Living at Regens Wagner since 1998

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Eric 39 years old Living at Regens Wagner since 2009

Martina 39 years old Living at Regens Wagner since 2012

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

Thank you! Congratulations