Prader-Willi Syndrome (PWS) is a complex, multistage genetic disorder which affects multiple systems in the body. It significantly impacts on behaviour, mental and physical health. People with PWS require cognitive, social, learning and health support throughout their lives. A person with PWS can live a healthy, fulfilling life when they have ongoing, consistent support from people who understand the intricacies of the syndrome.
Understand the Impact of the syndrome on the person, their families and those around them, illustrated by real examples.
Anyone who is helping a person with their NDIS plan, for example an NDIA Planner, a Local Area Coordinator or other service provider needs to understand the unique aspects of Prader-Willi Syndrome, as they relate to the NDIS Plan. The PWSAA has prepared a guideline for Planners when working with a PWS participant.
For NDIA Technical Advisory Team members
Assessing the support needs of a person with PWS is not straight forward. Their condition changes over time. Their emotional volatility and disruptive behaviour sometimes means that a situation that has been working well, may reach breaking point.
There is a lot of evidence to explain why PWS is a difficult condition. PWS is not like other intellectual disabilities. The PWSAA guideline for TAT staff, Assessing NDIS participants with Prader-Willi Syndrome, contains a reference list.
Anyone interviewing a person with PWS needs to know how to progress a meaningful discussion.
Get prepared in advance of your interview with a PWS participant, using Awareness for Meetings with Professionals brochure.
How does a person with PWS think, from PWSA USA. It provides insight into why people with PWS get themselves into such difficulties. A neurological, sensory integration deficit is just one of their problems.