Prioritising Supported Decision-Making: Running on Empty or a Basis for Glacial-To-Steady Progress?

Abstract

Honouring the requirement of the Convention on the Rights of Persons with Disabilities to introduce supported decision-making (SD) has largely been a case of much talk and little real action. As a socio-economic right, actualising support is resource-intensive as well as being fairly uncharted territory in terms of what works, to what degree and for how long benefits last. This paper, drawing lightly on mainly Australian examples, considers unexplored (and sometimes unorthodox) approaches such as the 'needs-based' principle for setting social welfare priorities as possible ways of revitalising SD through progressive realisation, whether through civil society programs or under the law. It argues that pure repeal of proxy decision-making on its own is not viable in realpolitik terms so progressive realisation of 'repeal with adequate support' must instead be devised for SD implementation to progress.

Service users' experiences and views of support for decision‐making

“…The recognition of decision‐making as a critical component of personhood and citizenship is also important for the realisation of equal rights (Bach & Kerzner, ; Flynn & Arstein‐Kerslake ). As such, Professor Amita Dhandra suggested that “supported decision‐making would be better conceived as a universal component of community life for all citizens, rather than something targeting only those with a disability” (Carney, , p. 49). It is sometimes distinguished from shared decision‐making which has a relatively narrow focus on healthcare professionals working with service users to make healthcare decisions although supported decision‐making does also refer to healthcare decision‐making (Simmons & Gooding, ).…”

“…Carney and Beaupert () argue that implementing supported decision‐making is complicated as it is ‘conceptually ill‐defined’, leaving it open to multiple interpretations. Carney () goes further to suggest that the introduction of supported decision‐making ‘has largely been a case of much talk and little real action’ (p. 18). Shogren and Wehmeyer () have developed a helpful theoretical framework for research and intervention design but, in practice, this work is still developing.…”

“…Shogren and Wehmeyer () have developed a helpful theoretical framework for research and intervention design but, in practice, this work is still developing. Other potential barriers to providing effective support include slow progress on legislation reform, the cost of implementation, the need for staff training, inconsistent practices, concerns regarding safeguarding, and a lack of involvement of people that require decision‐making support in developing services (Carney, ; Goldsmith, Skirton, & Webb, ; Hoole & Morgan, ). In addition to the institutional barriers to supported decision‐making, people with intellectual disabilities have also identified the following challenges: (a) adults with intellectual disabilities are often viewed as children; (b) a power imbalance exists between the supporter and supported; (c) confusion over differences between ‘mental disorder’ and ‘intellectual disability’ by supporters; (d) the need to balance protection against autonomy (and risk taking); (e) a failure to consider that different decisions may require different levels of support; and (f) the absence of a trusting relationship between the person being supported and their supporter (Jamieson, Theodore, & Raczka, ; People First (Scotland), ).…”

“…There is a consensus in the literature about the need for more research on supported decision‐making and, in particular, robust and rigorous trials (Douglas et al, ; Carney & Beaupert, ; Carney, ). There is still a great deal to learn about the practicality of different approaches to supported decision‐making and the experiences of the supported, supporters, and those implementing these approaches.…”

Legal capacity and the mental health social worker role: an international comparison

“…(Galon and Wineman, 2010, p314) This issue of the quality and context of the moment when mental health social workers and other professionals make such fundamental, potentially life-changing decisions on behalf of the client is now discussed at the interface of mental health and capacity laws the four chosen jurisdictions. Although there will always be situations where substitute decision making is necessary, and appears to be more effective when professional work in these empathic ways, the opportunities to engage in alternative, supportive decision-making process, it is argued, should always be considered, a point made by Carney (2017) in his recent review of the evidence base.…”