Moving from Support for Decision-making to Substitute Decision-making: Legal Frameworks and Perspectives of Supporters of Adults with Intellectual Disabilities

Shih-Ning Then  
Associate Professor, Law School, Queensland University of Technology;member of the Australian Centre for Health Law Research
Terry Carney
Emeritus Professor of Law at the University of Sydney Law School; Visiting Research Professor at the Law Faculty, University of Technology Sydney
Christine Bigby
Professor , School of Allied Health, Human Srvices & Sport, La Trobe University; Director of the Living with Disability Research Centre, La Trobe University
Ilan Wiesel
Associate Professor School of Geography, Earth and Atmospheric Sciences, University of Melbourne
Elizabeth Smith
Adjunct Research Fellow at the Living with Disability Research Centre, La Trobe University
Jacinta Douglas
Professor of Acquired Brian Injury (Summer Foundation Chair), School of Allied Health, Human Srvices & Sport, La Trobe University; member of the Living with Disability Research Centre, La Trobe University
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Abstract

The United Nations Convention on Rights of Persons with Disabilities (UNCRPD) has significantly changed the way our society views models of decision-making for adults with cognitive impairment. The formerly-accepted substitute decision-making models – where a person can legally make decisions for an individual, often guided by the ‘best interests’ principle – are considered less desirable than supported decision-making which prioritises an individual’s ‘will, preferences and rights’. However, disciplinary differences in understandings about what these concepts entail and how they should look in policy, legal and practice frameworks persist.

For many, supported decision-making is experienced through informal support for decision-making through close family, and in the absence of a legal appointment. What this support looks like and whether it can help achieve the aim of greater participation by people with intellectual disability is still being empirically examined. In addition, the circumstances when that support moves into informal substitute decision-making is largely unexplored. It is also unclear whether the reasons for such a shift mirror the legal requirements for the appointment of a formal substitute decision-maker under Australian law.

This paper uses a subset of qualitative data from interviews with parents who act as supporters to adults who have an intellectual disability. The overall aim of the study was to explore the impact of training in applying a practice framework (the La Trobe Support for Decision Making Practice Framework) about effective support for decision-making. We show that promising development is reported from the impact of capacity-building training for supporters, with evidence that the decision-making capabilities of adults with intellectual disabilities can be seen to shift over a period of time and training informal supporters can be effective in moving the dial as to when a supporter finds it necessary to step in and make a substitute decision. However, we also demonstrate that considerations of ‘risk’ and future opportunities for the supported adult are nuanced factors taken into account by supporters who shifted into a substitute decision-maker role and this is not well accounted for in our legal frameworks.

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How to Cite
1.
Then S-N, Carney T, Bigby C, Wiesel I, Smith E, Douglas J. Moving from Support for Decision-making to Substitute Decision-making: Legal Frameworks and Perspectives of Supporters of Adults with Intellectual Disabilities. LiC [Internet]. 2022Mar.3 [cited 2022Sep.28];37(3). Available from: https://journals.latrobe.edu.au/index.php/law-in-context/article/view/174

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