| Popis: |
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. |
