A critical assessment of supported decision-making for persons aging with intellectual disabilities

Providing support for decision making to adults with intellectual disability: Perspectives of family members and workers in disability support services

“…Concern has been raised about confusion over the legal standing of informal supporters, and the sometimes paternalistic nature of decision support (Bigby, Bowers, & Webber, 2011;Bowey & McGlaughlin, 2005;Dunn, Clare, & Holland, 2010;Kohn & Blumenthal, 2014). Several studies have identified the restrictive impact that staff or family expectations can have on decision-making opportunities (Antaki, Finlay, & Walton, 2009;Healy, McGuire, Evans, & Carley, 2009;Rossow-Kimball &Goodwin, 2009).…”

Supported Decision-Making for People with Cognitive Impairments: An Australian Perspective?

“…However it becomes much more difficult to find that balance when there is so little evidence about "what works", or for whom, or to what degree. This is true not only of international experience with different forms of supported decision-making enshrined in or specifically recognised by law [7,36], but also in understanding the efficacy or otherwise of informal schemes [22]. As the former Chief Justice of the High Court of Australia Sir Anthony Mason warned regarding the perils of embarking on policy-making or legislative reform absent a sound evidence-based approach "[a]s things currently stand, [current] proposals seem to reflect little more than ideals that have not been carefully thought through, with the risk that they will result in experimental law-making" ( [93], p. 173).…”

“…As is the case with substitute decision-making, access to assistance in making decisions engages four main groups of people who experience cognitive impairment: people with intellectual disability [7,8]; people with a mental illness [2]; people with an acquired brain injury [9,10]; and people living with dementia [11]. Where cognitive capacity is impaired for one reason or another, accessing such assistance may become more pressing; but demand for it will vary depending on many things, including family circumstances, stage of life-cycle, exigencies of life (such as where a person lives) and the source of the cognitive impairment.…”

“…Planning decisions about the provision of reasonable support are reviewable by the AAT 6 and that process is both supported and flexible [78]; though if an individual's plan makes provision for conciliation, this is the first step [79]. To date four such reviews have been heard, all of which were unsuccessful (one due to lack of jurisdiction to review) 7 . If such review continues to prove to be a dry gully (despite it having some success in a cognate field in Victoria's since abandoned review panel: [39,[81][82][83]), pressure may build to turn to what might be termed "creative misuse" of supported decision making or proxy powers as a second best way of bringing leverage to bear.…”

“…In part this caution about wholesale adoption of supported decision-making is warranted, in that international evidence of what types of assisted decision-making regime "work" is lacking [6,7,14,36], along with information about its possible differential appeal based on personal characteristics of people involved (e.g., a cultural preference for collaboration: [6], p. 124) or between disability categories (see [6], pp. 135-36, suggesting its greatest appeal is for people with intellectual disabilities).…”