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Supported decision-making
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The NDIS is designed to have people with lived experience of disability at its centre. This means that people have choice and control over their funding and supports and ultimately over their own lives. And yet this can be challenging for people with intellectual disabilities. Many people with intellectual disabilities are said not to have ‘legal capacity’ to make decisions. This means that decisions are made for them by ‘substitutes’, often called ‘substitute decision-makers’. This can be done formally by guardians, administrators or NDIS plan nominees or informally by family members or care/support workers.
When decisions are made by substitute decision-makers, it means that people with disability may not have their own wishes – sometimes called their ‘will and preferences’ – listened to and respected. Often, substitute decision-makers will decide what a person with disability wants, by deciding what is in their ‘best interests’. This means the substitute decision-maker may make the decision they consider to be best, rather than prioritising the wishes of the person. In many cases this means that people with disability are denied their human rights.
The 2008 Convention on the Rights of Persons with Disabilities (‘the UN CRPD) states that it is a human right for people with disability to make decisions about their own lives. Article 12 states that all people with disabilities must have their ‘legal capacity’ recognised. This means that they must have their decisions recognised and acted upon. The UN CRPD also provides that governments must make sure that people with disability have access to ‘support’ to make their own decisions. Support may require access to communication tools and independent information, but more importantly, support must be available from people – called ‘supporters’ – to help people participate in decision-making. Supporters can assist people with disability in making their own decisions and be decision-makers.
This paper discusses the concept of 'supporting' rather than 'substituting' the decisions of people with disability.
