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

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

PWS by age   
Benefits and services   

Mental Capacity
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

PWS Passport

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 or complete online 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

 

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