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 - a guide for parents containing information to help them navigate their way through their child's journey from birth through adulthood.  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

Dietary Management

Behaviour Management

Social life and relationships

Health and social services    

Residential care and supported living  

Preparing for the future  

Ageing in PWS    

Speech & Language

Government Allowances & Sources of Financial Help

Useful Agencies

Education, work and training  18 – 25 years

Developing skills, work and training  25 – 40 years

Work and training  40+ years

Healthy Futures Pack

Our “Healthy Futures” folders contain “easy read” information for our adults (16+) with PWS. We asked our OWL Focus Group to tell us which subjects they felt were most important to them and should be included and they were:

  • How to cope when I’m feeling anxious or upset
  • Relationships, Social Life and Hobbies
  • Vision and Care of the eyes/healthcare

 If you would like a copy of the “Healthy Futures” pack  you can download it here, alternatively email mrowley@pwsa.co.uk or phone (01332) 365676.

 Our ‘Healthy Futures’ packs have been kindly funded by Aviva.

 

All About Me

'All About Me' is a resource that 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
 

Residential Care & Supported Living

It is very rare for a person with PWS to live completely independently. Most adults will either stay with their family or move into residential care or supported living. Whatever option is chosen, access to food and a restricted lower calorie diet must be in place to maintain a healthy lifestyle. Additionally, because of the challenging behaviour associated with PWS, a number of other support and management techniques are often needed.

Information for residential care and supported living staff       Important considerations for supported living

Supported Living and PWS Notes from Residential Care and Support Living Forum meeting July 2016

Information for CQC & Commissioners Of Care

Mental Capacity

Although people with PWS are capable of making decisions about many areas of their life, the hypothalamic  dysfunction means that they rarely have the capacity to make a rational decision about eating. Even if they can make a decision at one point in time, this may not be the case at other times, particularly in the absence of supervision or environmental restrictions.

Click here to read more about mental capacity in PWS and how the Mental Capacity Act 2005 can be used

Mental health in PWS

 

People with PWS and work

Most people with PWS are more than capable of work, whether voluntary or paid, and are just as keen as other people to contribute to their communities. So it may be surprising to learn that, to date, very few people with PWS have full time jobs. This is partly because of the complex nature of the syndrome and partly because trainers and employers are not always aware of the particular environmental boundaries that may need to be put in place for people with PWS. Without which, the person with PWS may well be "set up to fail" from the outset. 

Best Practice Guidelines for Employers

Further Information

PWS by age  

Benefits and services 

The Basics of a Healthy Adult Lifestyle – Famcare, International PWS Organisation 

Good Health Checklist for Adults with Prader-Willi Syndrome – Famcare, International PWS Organisation

Contact us

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