Significant Individual Support Needs – Supportive Practices and Modified Environments for people living with Prader-Willi Syndrome
Position Paper (Draft)
Prader-Willi Syndrome Australia, July 2020
This paper is provided in support of the Prader-Willi Syndrome Australia (PWSA) statement that:
People with PWS find it difficult to sustain life in the absence of significant and ongoing specialized support practices. What constitutes ‘ongoing specialized support’ will vary from individual to individual. Each case has to be taken on its own merits, depending on the ability of the person to make specific decisions about their own welfare, especially eating.
Practices that deliver food security enable a person with PWS to live a more ordinary life. Personal freedom, in line with United Nations Convention on the Rights of Persons with Disabilities, should be pursued at all times. However, practices which modify the support provision environment to enable ‘due care and diligence’ could potentially have an impact on ‘personal choice and control.
These statements and this position paper will be revisited and updated as part of an international Personal Choice and Control review being undertaken by the International Prader-Willi Syndrome Organization (IPWSO) its 100+ member countries and associated support organisations. The review is aimed at drawing up World Best Practice Guidelines. Such guidelines will encourage least-restrictive practices, while recognizing that some elements of food security and ongoing support practices are required to sustain life, and enable people living with PWS to reach their full potential.
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