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Article 12 of the United Nations Convention on the Rights of Persons with Disabilities has been instrumental in driving the development of the concept and practice of supported decision making. An important feature has been the development of "supported decision making pilots." This paper identifies, describes and analyses pilot programmes providing support for decision making for people with cognitive disabilities in Australia and internationally between 2016 and 2021. It finds that challenges included providing support for socially isolated people and adequately resourcing those programmes. However, most pilots reported positive outcomes for decision makers, adding to the evidence base for claims to be made about the positive impact of supported decision making on the lives of people with disabilities. The pilots demonstrate that, internationally, there is an emerging set of programmes that seek to promote supported decision making incrementally through developing focussed community awareness and practice. While still small‐scale, time‐limited and experimental, with different levels of rigour in practice and evaluation, they provide some foundation and a preliminary evidence base for larger interventions and reforms in the future. [ABSTRACT FROM AUTHOR]

This article reports findings from the first set of qualitative data from a study aimed to further understand practices of decision support for people with cognitive disabilities and assess the impact of training supporters in an evidence-based practice framework. It poses questions about whether, using the Convention on the Rights of Persons with Disabilities (CRPD) as the benchmark, it is possible to identify purchase points for assessing the degree of shift from paternalism towards empowerment of the supported person. The study findings suggest that this is a highly difficult, nuanced and subjective task offering little on which to hang objectivity. Instead, we suggest CRPD realisation of the will, preferences and rights of the person supported may better be realised through training of supporters designed to enable greater participation by persons supported and greater reflection and deliberation on wise and effective ways of providing such support by supporters. The meaning of terms like empowerment, paternalism and capacity building are very difficult to define with any precision Whether support actually helps someone with a cognitive disability to achieve their will or preferences is hard to assess There are no easy ways of ensuring that support for decision-making stays on the path set out in the UN Convention on the Rights of Persons with Disabilities An alternative measure of meaningful participation in decision-making may be a better guide for assessing training of supporters [ABSTRACT FROM AUTHOR]

A rights perspective proposes supported decision-making as an alternative to substitute decision-making. However, evidence about supported decision-making practice is limited. Our aim was to build evidence about building the capacity of decision supporters. Eighteen parents of people with intellectual disabilities were trained in decision support using the La Trobe Support for Decision-making Practice Framework. Data from repeated semi-structured interviews and mentoring sessions were used to capture parental reflections on the value of training. The training acted as a catalyst for parent self-reflection and the Framework prompted them to adopt a more deliberative approach to supporting decision-making. Some parents perceived increased confidence of their adult offspring in expressing preferences resulting from their own changed approach. This study demonstrates the efficacy of this Framework and evidence-based training in building the capacity of parental decision supporters to be consistent with the rights paradigm. The La Trobe Support for Decision-making Practice Framework is an evidence-based approach to decision support practice with an accompanying set of free online resources which can be used by individual practitioners or programs to inform their practice and build the capacity of supporters. Parents of adults with intellectual disabilities value training in the La Trobe Support for Decision-making Practice Framework, which they consider helps to develop their decision support skills and self-reflection. Parents also value individual mentoring following training to assist them to apply the principles of the practice framework to the everyday support for decision-making they provide to their adult son or daughter. Training in support practice should be accompanied by individual mentoring or other strategies to assist parents of adults with intellectual disabilities to discuss and solve the difficult issues they confront in providing decision support more aligned to the rights paradigm. [ABSTRACT FROM AUTHOR]

The UNCRPD has generated debate about supported decision making as a way to better enable people with cognitive disability to participate in decision making. In Australia, between 2010-2015, a series of projects have piloted various models of delivering decision making support. A critical review was conducted on the program documents and evaluations of these pilot projects. The pilots were small scale, conducted by both statutory and non-statutory bodies, and adopted similar designs centred on supporting a decision maker/supporter dyad. Primarily, participants were people with mild intellectual disability. Themes included: positive outcomes; uncertain boundaries of decision support; difficulty securing supporters; positive value of program staff and support to supporters; limited experience and low expectations; and varying value of written resources. The lack of depth and rigour of evaluations mean firm conclusions cannot be reached about program logics, costs or outcomes of the pilots. The pilots demonstrate feasibility of providing support for decision making rather than resolving issues involved in delivering support. They suggest that some form of authority may facilitate the role of decision supporters, help to engage others in a person's life, and integrate decision making support across all life domains. [ABSTRACT FROM AUTHOR]

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 decisionmaking. 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. [ABSTRACT FROM AUTHOR]