There are a lot of changes to deal with once a person with PWS becomes an adult. They may be leaving school, transferring from child health services to adult health services and possibly wanting more independence. Parents no longer have an automatic right to control what their son or daughter does, though best interest and mental capacity reviews (see below) can help maintain some measure of control. Parents of adults with PWS who do not have a measured learning disability may sometimes find it difficult to access appropriate services. It can be helpful in such cases to make an analogy with people with high functioning autism.
Many adults often leave home to live in residential care or supported living. Trained and committed care staff are essential for the well-being of people with PWS.
The following links are sections from the PWS Journey. Families can obtain a hard copy of the whole PWS Journey, which is updated as their child reaches the next age range, by becoming a member of PWSA UK
Social life and relationships
Health and social services
Residential care and supported living
Caring for yourself and other family members
Preparing for the future
Ageing in PWS
Other links of relevance to adults with PWS
Famcare – An International PWS Organisation (IPWSO) project, designed to support families whose adult son or daughter lives at home. Several articles to help manage PWS are included on their web pages
The PWS Passport can be used to inform others working with or caring for your son or daughter about their needs - you can adapt it to fit your personal circumstances.
If you have a question about adults with PWS which is not answered in the links provided, please contact us.