The National Disability Insurance Scheme provides ‘reasonable and necessary’ funds to eligible people living with a disability so that they can purchase support to live an ‘ordinary life’. It is a complex system. A person living with Prader-Willi Syndrome is likely to qualify for support funding (Plan) from the NDIS for their whole life.

There are different components of the NDIS. There is the National Disability Insurance Authority that assesses applicants and decides on individual budgets. There is a regulator (NDIA Quality and Safeguards Commission). Then there are the providers that deliver a variety of supports to people living with PWS. There is a lot of information on the web of those organisations.

The purpose of the resource collection here is to enable you to better understand how the NDIS is relevant to PWS in particular. Research has shown the Prader-Willi syndrome is very complex and challenging. It is not like other intellectual disabilities. Families can play an important role in educating the disability sector workers and mainstream service providers like doctors and allied health professional regarding how they can best support those living with PWS. Resources to help you are listed.

Meeting the NDIS

Preparation for the initial meeting with the NDIS and subsequent reviews or appeals.

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.

Moving out of family home – NDIS planning steps

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

Support providers page

Guidance on how workers can deliver service with an understanding of PWS, leading to better experiences and outcomes.

What is the NDIS?

The NDIS Quality and Safeguards Commission regulates providers and workers within the system.

Administrative Appeals Tribunal (AAT) hears cases when other avenues of appeal (‘review’) have been exhausted.

Please reach out to the team at PWSA to learn more about the NDIS and appeals from the personal experiences of its members.

Specialised PWS professional development training is available to disability services providers through PWSA. Please make your request on the Contact us page.