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 (click through to membership page)
Social life and relationships 18 - 25 years 25 - 40 years 40+ years
Health and social services 18 - 25 years 25 - 40 years 40+ years
Residential care and supported living 18 - 25 years 25 - 40 years 40+ years
Mental capacity and the Mental Capacity Act 2005 18 - 25 years 25 - 40 years 40+ years
Caring for yourself and other family members 18 - 25 years 25 - 40 years 40+ years
Preparing for the future 18 - 25 years 25 - 40 years 40+ years
Ageing in PWS 40+ years
Other links of relevance to adults with PWS
PWS by age
Benefits and services
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.
You can download it here
PWSA UK Publications
Let’s Talk about PWS
An interactive workbook for children and adults with PWS who have limited understanding, explaining in basic language how the syndrome affects them. Explores themes such as diet, exercise, speech, routines and feelings.
Our Way of Life
Contains real life stories by people with PWS - all of whom are different, but all of whom share many of the daily challenges of living with the syndrome.
Beyond the Veneer
A useful guide for social services, residential care and supported living providers. It identifies the very special needs of people with PWS and suggests ways in which these can best be met within a residential home or supported living situation.
Click here to go to the publications page
Prader-Willi Syndrome: Growing Older – Terrance N James
Documents the stories of Canadians with PWS who are over the age of 40 and their quality of life.