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Overview of supported_living_for pws_germany (1)


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Presentation given by Dr Hubert Soyer at the Prader-Willi Association Ireland Annual Conference 2014. For more details, see

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Overview of supported_living_for pws_germany (1)

  2. 2. Thank you for your invitation Germany approx. 80 Mio. Inhabitants 6.000 – 8.000 people with PWS 2
  3. 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 3
  4. 4. 4 Overview about special offers for PWS in German 13 Providers about 27 locations about 400 places
  5. 5. Assisting people with Prader-Willi Syndrome Psyche Soma 5
  6. 6. body height tireness weight self-confidence body consciousness vulnerability for psychotic disorders Assisting people with Prader-Willi Syndrome 6
  7. 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….. 7
  8. 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 8
  9. 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). 9
  10. 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. 10
  11. 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. 11
  12. 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. 12
  13. 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. 13
  14. 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. 14
  15. 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. 15
  16. 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 16
  17. 17. Supported living Crisis inter- vention Information Case- management Workshops Support in family Consulting Structured environment 17
  18. 18. Environment = the circumstances, objects or conditions by which one is surrounded 18
  19. 19. Child PWS Other children Father Caregiver Micro- systems Institutions Cultural norms Laws Job market Mother Working- place 19
  20. 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 20
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  25. 25. 25 Kerstin 37 years old Living at Regens Wagner since 1999 Florian 28 years old Living at Regens Wagner since 2003
  26. 26. 26 Karin 32 years old Living at Regens Wagner since 2005 Andreas 30 years old Living at Regens Wagner since 2004
  27. 27. 27 Sonja 27 years old Living at Regens Wagner since 2008 Jürgen 48 years old Living at Regens Wagner since 1998
  28. 28. 28 Eric 39 years old Living at Regens Wagner since 2009 Martina 39 years old Living at Regens Wagner since 2012
  29. 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. 30. Thank you! Congratulations