People with Prader-Willi Syndrome have aspirations for life, like we all do. They will really appreciate your support to help them strive for their goals, in a safe and productive way. They are sociable and mobile, and enjoy getting out and about in the community. They love to chat and have a joke. As you get to know them, you will discover that they have many different interests and life experiences – no doubt they will be happy to share these with you . People with PWS also like to keep fit. They do so many different things like swimming, basketball, bowling, bike riding and going to the gym. Life is always more fun with company! There’ll never be a dull moment when supporting a person with PWS!
It is important for all adults to participate in meaningful community activities. This might be a hobby club, sports team or other activity. This works well in a supported arrangement. Adults with PWS can go to work. They often work in supported employment or day programs. Sometimes they find open employment with a unique employer, but only part-time.
Getting NDIS support is essential. The NDIS is a national initiative that takes over from State funding. Learn more about getting NDIS support.
Learn how funding from the National Disability Insurance Scheme (NDIS) can provide support for the person with PWS to work towards their goals and greater independence.
It is usually a risk for people with PWS to have access to too much money. Consider a formal Administration or even Guardianship arrangement, when pension and NDIS funds become available. Assistance with managing cash flow and legal matters is usually in the best interests of the person with PWS. The process to put Administration in place will differ in each State. Look online for something similar to the Office of the Public Advocate in your State.
People with PWS seem to lie a lot. But it is actually a PWS characteristic. It can get them into social and legal difficulties. Learn about confabulation or, story telling.
If the person with PWS is living at home, the Famcare brochure series from the International Prader-Willi Syndrome Organisation (IPWSO) is excellent. They focus on managing the challenging behaviours such as confabulation, anxiety, social and health issues. Some of the brochures come in different languages.
Anyone interviewing a person with PWS, whether it be for health, a social issue or NDIS services needs to be aware of the characteristics of PWS. It is imperative that an appropriate support person is included in the interview process. This will allow for confirmation, or provision of accurate information. Prepare in advance of an interview by reading the ‘PWS Awareness – for Meetings with Professionals‘ brochure.
Learn more about the PWS personality.
Behaviour Management in Prader-Willi Syndrome – an overview of issues with communication, stubbornness, temper, manipulation, OCD, lying, mental health and more.
- Prader-Willi Syndrome Good Health for Adults checklist, including hormones, dental, orthopedic and more.
- Eating behaviour tips – University of Queensland
- Prader-Willi syndrome: Care of adults in general practice
International best practice recommends that when people with PWS can’t live in the family home, they live in supported accommodation. Very clear guidelines apply to food security and behaviour management. This may mean a PWS-specific environment.
Each State currently has different arrangements. However, with the NDIS we should see some consistency come into the residential care of people with PWS. See the guide for Providing PWS support in residential settings to learn more.
A not-for-profit organisation, the Better Living Foundation, has been set up to explore different accomodation models that could suit people with PWS. Go the the PWS Better Living Foundation website to learn more.
Wills and trusts
Parents need to know about wills and trusts made for their disabled family member. Here are a few resources to start you off. Look for the equivalent in your state.
- Planning for the Future for People with Disability from DSS Australia
- Special Disability Trusts from DSS Australia
- Intellectual Disability Rights Service
- Wills for Parents