Ms Michelle King1
1QUT: Australian Centre for Health Law Research
Background:
Article 12 and the recognition of universal legal capacity in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) has transformed the legal status and agency of people with disabilities. However, supported decision-making has widely recognised challenges in the ‘hard cases,’ such as for people with profound intellectual disabilities: those with fundamental challenges to making legally recognised decisions. There is also little empirical work on legal decision-making with ‘hard cases’ to ground interpretations of Article 12.
Method:
This paper explores the legal framing and interpretations of supported decision-making by Article 12 for people with profound intellectual disabilities. The discussion is grounded by analysis of in-depth interviews with 18 participant pairs (a young adult with profound intellectual disabilities and their decision-maker) about decision-making in practice during the legal and administrative transition to adulthood in Australia.
Results:
Three key issues with Article 12 for ‘hard cases’ are identified: the problem with merging legal status (personhood) with legal capacity (citizenship/agency); the issue of not fully accounting for people who are unable to be supported to make decisions in legal and administrative contexts; and the failure of the ‘will and preferences’ standard for those who have never had decision-making capacity. The paper uses the novel concepts of profound difference and radical dependence to frame this critique.
Implications:
People with profound intellectual disabilities, one of the ‘hard cases’ of legal capacity, do not fit well within most supported decision-making models based on Article 12 of the UNCRPD. They risk being excluded further if decision-making is not carefully constructed to include a level of ‘support’ which is effectively a substitution, and to think about ‘support’ in new and inclusive ways which fully accept profound difference and radical dependence.
Key Words: Article 12 UNCRPD; Supported Decision-making; Substituted Decision-making; PIMD; Profound Intellectual Disability; Transition to Adulthood; Socio-legal
Biography:
Michelle is a sociologist and lawyer completing a PhD in Law at the Australian Centre for Health Law Research at the Queensland University of Technology. Her work is about the operation of law and regulation in practice for people with profound intellectual and multiple disabilities during their transition to adulthood, which includes healthcare, the NDIS, Centrelink, banking, guardianship/administration systems, and legal decision-making. Michelle is a researcher, educator and advocate in disability law, policy, and practice. She also has lived experience in complex disability and health care as a parent and supporter of her 23-year-old daughter, who has profound intellectual and multiple disabilities.