Regulators

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Regulators

Jan 17, 2024

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Prader-Willi syndrome (PWS) is complex. PWSA fully endorses the UN Charter of the Rights of People with Disabilities and where possible, the elimination of restrictive practices. However, research has shown that due to altered brain function in PWS, total removal of restrictive practices may result in extreme ill health, shortened life span and premature death.

PWS is a complex, multistage genetic disorder which affects multiple systems in the body across multiple life stages. 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.

The complexity of the syndrome poses challenges for regulators who need to balance independence, dignity of risk and the health and welfare of the person living with PWS.

People with PWS can appear quite capable in some situations. But biological changes resulting in executive brain disfunction, combined with hyperphagia (dangerous desire to eat too much), has adverse consequences on their decision making capacity.

PWS rights and decision making capacity.

PWSA has published a Position Paper on ‘Supportive Practices and Modified Environments in Prader-Willi Syndrome’. It explains how the least restrictive practices can support a person with PWS to have an ordinary and fulfilling life.
PWSA has written an article for the NDIS Technical Advisory Team and other decision makers in the NDIA, and Quality and Safeguards Commission. It gives more detail about the common characteristics of PWS, with research evidence.
The UK PWSA gives an overview of mental capacity in relation to PWS food related decisions and executive brain dysfunction. It discusses ethical considerations (and legal as apply in UK).
They have a certain communication style when meeting professionals.
They may confabulate (tell stories/lie) when meeting with you.

 

Get in touch

We welcome enquiries about anything related to PWS. This could be about the changes through the life stage of living with PWS, individual needs, services, getting help or interacting with the NDIS, the Quality and Safeguards Commission or the AAT.

Contact us