Supported Decision-Making and Paradigm Shifts: Word Play or Real Change?

Abstract

Article 12(3) CRPD requires states parties to provide access by persons with disabilities to the support they may require in exercising their legal capacity. This is to ensure that the rights, will and preferences of persons with disabilities are enjoyed on an equal basis with others [Articles 12(1)(2) and (4) CRPD]. Moreover, the Committee on the Rights of Persons with Disabilities has made it clear that supported decision-making must replace substitute decision-making arrangements as these are discriminatory and deny equal enjoyment of the right to exercise of legal capacity for persons. At the same time, there is ongoing debate as to whether or not the absence of substitute decision-making regimes is essential for the non-discriminatory realization of an individual's rights, will and preferences to be achieved. To resolve this debate, however, specific attention needs to be paid to the CRPD message on what it actually means to give effect to the equal and non-discriminatory enjoyment of rights for all. In the context of persons with mental disabilities this requires looking beyond human rights simply in terms of limiting unwarranted interventions to the proactive removal of obstacles to full rights enjoyment and the creation of environments that respect and support such enjoyment. With this in mind this paper will therefore critically consider the use of supported decision-making within existing substitute decision-making regimes with particular reference to Scotland's mental health and capacity laws. It will consider the challenges this poses and whether it is indeed possible to adapt existing regimes to achieve CRPD compliance. In doing so, it is suggested that a full appreciation of the overarching CRPD message about equality and non-discrimination in the enjoyment of rights is required to bring about such compliance.

Paternalism to empowerment: all in the eye of the beholder?

“…Supported decision-making undoubtedly constitutes a paradigm shift from the centuries old model of substitute decision-making for people with a cognitive impairment (Bach and Kerzner 2010, Bartlett 2020, Quinn 2020, McCallum 2020, Kanter 2008, 560, Kohn, Blumenthal, and Campbell 2013, 1120. Support for decision-making covers both informal civil society programs or related practices that are the focus of this article, and legal recognition of support practices (see for example, Alston 2017, Stavert 2020) such as by authorising supporters to give or receive information to agencies on behalf of the person supported (Kohn 2021;OPA 2021). There are a multiplicity of ways in which support for decision-making programs have been delivered but a paucity of evaluations of program effectiveness (Bigby et al 2017, Kohn and Blumenthal 2014, Kohn, Blumenthal, and Campbell 2013.…”

Bioethics and advance directives in psychiatric in the hospital context

“…Knowing a patient's history could also provide appropriate support or accompaniment for clinical and non-clinical decision-making that patients consider valuable, and important to their full participation in PADs. Plans for anticipated care should thus be reoriented to people's daily lives (Nicaise, Lorant, & Dubois, 2013;Casado & Vilà, 2014;Hiu et al, 2020;Stavert, 2021).…”

“…The recent legislation of PADs in coordination with the U.N. Convention is intended to adapt mental health care to the social model of mental diversity; it constitutes a change from a paternalist posture to one of accompaniment in decision-making (Stavert, 2021;Marshall & Gómez, 2022). Self-determination, effective equality of rights, and the participation of persons with potential disorders is made explicit in the provision of care, therapeutic interventions, hospitalization, and other measures.…”

“…Even though, as Marshall and Gómez (2022) note, hospitalization should not be seen as involuntary if it is authorized in advance, PADs provide for it to be considered an "exceptional" measure in persons who experience an episode of acute instability (Amering, Stastny, & Hopper, 2005). The intent of the Convention and related legislation is to eliminate coercive interventions in order to guarantee the rights, the preferences, and the wishes of persons with psychosocial disability or mental illness (Szmukler, 2019;Noguero & Peregalli, 2021;Stavert, 2021;Scholten et al, 2021;Marshall & Gómez, 2022).…”

“…Changing the paradigm of mental health care in Latin America from one of hospitalization to one of accompaniment and support in personal decision-making is essential, even if it requires time and multiple transformations (United Nations, 2006;Noguero & Peregalli, 2021;Stavert, 2021;Cuevas-Esteban et al, 2022). The implementation of PADs cannot be postponed, and it must take place based on a respect for persons in a framework of bioethics.…”