With adulthood comes greater opportunities and different challenges, particularly around increasing independence and expanding community access.

Educating those that work with and support individuals regarding their very specialised treatment and support needs is essential. Usually, instead of being under the care of a particular health professional, such as a child and family paediatrician, adults will be seen by different specialists for their healthcare. A wider range of social support may also be needed. Understand more about  support needs health management and opportunities for adults living with Prader-Willi syndrome.

Helping carers to understand PWS: Kate’s story

A woman explains the challenges of living with PWS and the role of restrictive practices (Courtesy of IPWSO).

Moving out of family home – NDIS planning steps

A wealth of information about successful supported living for adults with PWS.

Friendships and relationships

A person living with PWS talks about the challenges of social connections, gender and sexuality.

Information for GP’s

An overview of characteristics of PWS, with health care risk and recommendations.

Hospital admission guidelines

Royal Prince Alfred Hospital recommened admission policy for people living with PWS.

Mental capacity and guardianship

An introduction to the differences in the arrangements.

Supported decision making

Some disabled people need support to make big decisions in their lives. This booklet introduces the concepts.

Information for professional providers and support workers

International best practices for providing disability and health support.

Support providers – expectations

Guidance on how to have the best community inclusion experience and better community access outcomes.

Government assistance

There is government assistance available to families with a loved one living with PWS. It includes Carer Payments, the Disability Support Pension (DSP) for the individual and other discount arrangements.

Information for NDIS planners, LAC’s and support coordinators

A guide that explains how those roles can offer better service to people living with PWS.

For me

People living with PWS can learn from each other. Australians have an online PWS leaders group called Our way of Life Australia. See the video and other resources about relationships, online safety and more on the For me page.

Living options for people with Prader-Willi syndrome featuring Brad and Nathan

This video shows two Australian men talking about their supported living arrangements.

Caring for yourself and other family members

You are not alone, sharing experiences with other families, spending time with family, focusing on the positive achievements.

Full time care services have the likelihood of enhancing the lives of people with PWS

Findings from a recent paper about body weight, behaviours of concern, and social contact in adults and adolescents with Prader-Willi syndrome in full-time care services. Based on pooled international data including Australia.

Disclaimer: The content on this website is for information only. Everyone is an individual and needs to seek the advice of relevant professionals.