Book review: Implementing the Right to Decide Under the Convention on the Rights of Persons With Disabilities: Supporting the Legal Capacity of All Persons With Disabilities

This monograph explores what János Fiala-Butora identifies as ‘one of the most controversial questions in contemporary human rights law’ ¹ namely how all disabled people, specifically including those with higher support needs, can make legally significant decisions. The volume critically explores the significant challenges facing domestic governments and the international disability rights community in ensuring effective implementation of the ‘right to decide’ protected in international human rights law by Article 12 of the United Nations Convention on the Rights of Persons with Disabilities. ² The author examines the potential implementation of legal capacity law reform as a strategy for change. Adopting a novel and relatively abstract doctrinal-style analysis of the legal issues, the author develops a ‘Modified Support Framework’, designed to address the supported decision-making needs of all disabled people.

In 2008, the UN Convention on the Rights of Persons with Disabilities (CRPD) entered into force. Article 12 of the CRPD, the right to equal recognition before the law, has since become perhaps the most discussed provision in modern international human rights law. ³ Credited with ushering in a ‘paradigm shift’ towards recognising the equal personhood and full legal capacity of all disabled people, ⁴ Art.12 obliges states to provide access to the support which disabled people require in order to exercise their legal capacity on an equal basis with others. Despite its transformative intention, Art.12 remains the subject of conflicting (and sometimes entrenched) views, regarding how best to implement it within domestic legal systems. Indeed, some fear that ‘the more boundary-pushing elements of Article 12’ could result in it being ‘either expressly or implicitly rejected by most signatories to the CRPD’. ⁵ In this monograph, Fiala-Butora attempts to move beyond some of the key conflicts surrounding Art.12 and offers an approach for law reform based on the development of a ‘Modified Support Framework’, ⁶ which he argues can better accommodate people with high support needs within a system of universal legal capacity.

Art.12 of the CRPD was drafted as a response to the widespread human rights abuses which disabled people have endured under guardianship regimes and other forms of substituted decision-making. Substituted decision-making occurs when another person is appointed to make legally significant decisions on behalf of a person (whose decision-making ability may be subject to question), generally based on what that guardian ostensibly feels is in the ‘best interests’ of the disabled individual. The move away from substituted decision-making and towards support for decision making in Art.12 is an attempt to recentre disabled people as full and equal legal subjects who retain control over the decisions which affect their lives. ‘Supported decision-making is receiving attention throughout the world’ ⁷ as a vehicle to enable this. The term ‘supported decision-making’ can broadly be understood as a process in which a disabled individual is assisted by a trusted person (or group of people), to make and/or communicate their own choices. This often involves ensuring information is accessible, facilitating communication with third parties and ensuring that the person’s wishes are respected. Nevertheless, there are issues of terminological clarity around the meaning of ‘supported decision-making’ and ‘support for the exercise of legal capacity’ within the literature. ⁸ Much of this controversy can be distilled down into what the terms ‘substituted decision-making’, ‘supported decision-making’, and support for ‘exercising legal capacity’ are taken to mean in practice and law reform, ⁹ and different commentators hold differing views.

The UN Committee on the Rights of Persons with Disabilities (CRPD Committee), who are tasked with interpreting the Convention, assert that Art.12 requires the complete abolition of all substitute decision-making regimes and their replacement with ‘supported decision-making systems’. ¹⁰ The Committee outline that ‘supported decision-making regimes can take many forms’, but they must all: protect the disabled person’s rights and autonomy (including the right to choose who supports them or to refuse all support). They must be available to all people (including those with high support needs) at low or no cost. They must be based on the will and preferences of the person (not on what is perceived as being in his or her objective best interests). They must allow for the legal recognition of support person(s) (including a mechanism for identifying support person(s) and challenging the actions of support person(s) if required). They must accommodate differing forms of communication. They must facilitate the creation of support for people who may be socially isolated, and they must be subject to safeguards which ensure that the person’s rights, will, and preferences are respected. ¹¹ Piers Gooding has argued that under the CRPD Committee’s definition, a ‘a supported decision-making regime includes supported decision making, support with decision-making and broader support to exercise legal capacity, across a range of law, policy and practice’. ¹²

Despite its valorised status, the conceptual ambiguities at play mean that governments face significant challenges in implementing the shift in legal culture necessitated by Art.12. ¹³ Disagreements abound regarding how support for decision-making or ‘supported decision-making’ (as one potential implementation strategy) can be enshrined effectively within legislative systems. ¹⁴

This book adopts a relatively doctrinal-style legal analysis of the key features of guardianship and supported decision-making regimes. This approach is adopted to explore the benefits and burdens of the differing systems and to suggest a model for legislative reform which charts a midway between them, balancing the need to protect autonomy with the need to ensure legal certainty, weigh cost considerations, ensure effective administrative oversight, and impose safeguards which can protect disabled people from abuse. ¹⁵ This comparatively abstract style of analysis offers an original contribution to the existing scholarship, which largely adopts a more relational, sociolegal, and contextual framing of the key issues. Chapter 1 outlines the structure of the book, with Chapter 2 clarifying terminology and providing an overview of the development of legal capacity law at the United Nations and European levels. Chapter 3 explores differing interpretive approaches to the text of Art.12 using the canons of international human rights law, while Chapter 4 examines the ‘positive’ and ‘negative’ characteristics of Guardianship providing a more holistic analysis through which to compare the utility of law reform based on supported decision-making. Chapter 5 explores the theoretical literature around Art.12 and the potential of supported decision-making. It argues that the CRPD Committee’s interpretation of support for legal capacity outlined in General Comment No.1 reflects an idealised version of the support paradigm rather than a pragmatic option for legal regulation. Chapter 7 questions how disabled people with higher support needs can be accommodated within a framework of supported decision-making. Fiala-Butora develops the ‘Modified Support Framework’ which he argues can better protect the legal personhood of all disabled people, while being more practically realisable in legislative reform. Chapter 8 then offers concluding observations.

Several nuanced discussions have come to dominate the existing literature around Art.12, ¹⁶ namely about the theoretical, idealistic, and practical distinctions between substituted decision-making (based on a person’s ‘best interests’) and supported decision-making (based upon respecting the ‘rights, will and preferences’ of disabled people); the need to balance empowerment and protection; and the appropriate role for safeguards and oversight in order to prevent undue influence within relationships of support. These debates are somewhat put to the side in Fiala-Butora’s analysis, in hopes of pouring critical acid on the potential of supported decision-making systems to entirely replace all forms of substituted decision-making within law reform realities:

States cannot be expected to achieve perfect outcomes in each case of supported decision-making situation. There are limits on what general rules can achieve, what differences in expected behaviour they can enforce. An elaborate framework distinguishing between permissible and impermissible influence in the abstract might therefore not be an adequate source of regulation if it cannot be implemented in practice. ¹⁷

While several countries have introduced law reforms based on Art.12, very few claim to have entirely removed all substituted decision-making from both legislative provision and practice. ¹⁸ Fiala-Butora highlights the ‘manifest tension between the practice of domestic states and the principles expressed in the CRPD as interpreted by the CRPD Committee’, ¹⁹ arguing that Governments will remain reluctant to implement support for decision-making while there are gaps in our understanding of what exactly Art.12 requires and permits. For Fiala-Butora, ‘blatant and widespread non-compliance’ with the dominant interpretation of Art.12 ‘must have some relevance for constructing the meaning of the CRPD’ because ‘[a]n interpretation that all states of the world would find impossible to implement’ will simply be rejected. ²⁰ This risks hollowing out the transformative potential of Art.12.

Fiala-Butora analyses the two dominant approaches emerging from the literature around Art.12 which he characterises as the ‘Absolutist Position’ and the ‘Constricted Position’. The ‘Absolutist Position’ is largely characterised by those who advocate for the complete abolition of all forms of substituted decision-making and their replacement with systems based on ‘support only’ frameworks. This is the position adopted by the UN Committee on the Rights of Persons with Disabilities in General Comment No.1. It is also largely supported by the international disability rights community and within much of the legal scholarship on Art.12. ²¹ While acknowledging the ideological merit of ‘support only’ paradigms, Fiala-Butora argues that proponents of the absolutist position have not yet developed a comprehensive theory of how supported decision-making legislation can adequately accommodate disabled people with very high support needs. ²² The ‘Constricted Position’, in contrast, is characterised by the broad school of thought which, while acknowledging the benefits of supported decision-making, nevertheless advocates for the retention of some limited forms of substituted decision-making in exceptional circumstances, ²³ in recognition that some disabled people (such as those in a coma or with very profound impairments), may be practically unable to be ‘supported’ to make and communicate their own decisions. Thus, some decisions will inevitably be made on their behalf by other people. Advocates of the absolutist position posit that such situations can be characterised as ‘facilitated’ decision-making (suggested by Bach and Kerzner) ²⁴ or simply ‘100% support’ provision within the support paradigm. However, for Fiala-Butora, this is a ‘very tenuous proposition’, ²⁵ because these approaches are ‘in substance not different from improved substituted decision-making’. ²⁶ For Fiala-Butora, ‘a normative requirement does not overcome the factual impossibility’ ²⁷ and so we are at risk of what Gerard Quinn has called ‘stretching fictions beyond the point of credulity’. ²⁸ While dividing the commentary around Art.12 into these ‘absolutist’ and ‘constricted’ positionalities risks oversimplifying some of the nuances in the existing literature, the author does this intentionally, to illustrate the practical challenges facing law reform bodies and to advocate for the mid-way option developed in the ‘Modified Support Framework’. Fiala-Butora outlines that third-party actors including administrative or judicial oversight bodies cannot reliably determine whether a decision-making process is ‘supportive’ or ‘substitutive’ in cases where the disabled person’s form of communication is only knowable or understandable to their closest supporter(s). The law is therefore unable to properly regulate this space for people with high support needs, and we must acknowledge and accommodate this reality within legislative reforms if those reforms have any hope of being implementable and functional.

This book presents a novel approach to addressing some of the legislative challenges facing states parties in implementing Art.12 of the CRPD. Support provision emanates from intimate personal relationships between disabled individuals and their supporter(s). Thus, the law will always be ‘an imperfect tool’ ²⁹ for regulating such nuanced, complex, and interdependent relational realities. Improving the decision-making experiences of disabled people requires material and social changes which empower decision-making ability, improve communication opportunities, enhance accessibility, and improve recognition of disabled people’s right to decide. The rubrics of supported decision-making are far more likely to encourage this type of cultural shift than the ongoing use of guardianship. Tangible and workable law reforms enacting support for decision-making must now become our shared objective across the normative and theoretical divides surrounding Art.12. As such, this thought-provoking monograph will be of interest for disability and human rights commentators, researchers, students, and policymakers.