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Home > Information for Families > Adults with PWS

 

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.

PWS Journey
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

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

Other publications

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.

Click here to go to the publications page

Contact us
If you have a question about adults with PWS which is not answered in the links provided, please contact us.