In this paper we have explored the question of the extent to which, if at all, limitations on decision-making rights can be imposed given Canada’s commitments to international law on human rights and disability as reflected in the UN Convention on the Rights of Persons with Disabilities (CRPD). In so doing, we have examined how to ensure that people have access to the supports and accommodations they require to maximize exercise of their legal capacity, and the role of the state and other entities in assuring this outcome. In addressing the guiding question for this paper we have inquired into how the law can balance the right to autonomy while safeguarding people who may be vulnerable to abuse and neglect. Throughout, we have examined how to manage this balance in a manner that does not discriminate on the basis of disability.
People with intellectual, cognitive and/or psychosocial disabilities have faced a history of exclusion, denigration, victimization and denial of their rights. Sometimes, what has been considered the most progressive social policy has entrenched a paternalistic, self-justifying regime of total restriction on the autonomy of people with disabilities. The Canadian Charter of Rights and Freedoms, federal and provincial/territorial human rights Codes, and legal capacity legislation and jurisprudence have begun to crack the hold of paternalism in people’s lives. However, far too often the very regimes instituted in the name of human rights and autonomy still draw back when it comes to equally recognizing the right to legal capacity.
The United Nations Convention on the Rights of Persons with Disabilities signals a new era in human rights as they apply to people with disabilities. Article 12 of the CRPD, providing for equal recognition of legal capacity without discrimination on the basis of disability, requires an entirely new look at capacity law, adult protection laws, and mental health law. Existing provisions for the most part assume that a boundary between those considered legally ‘capable’ and those considered ‘incapable’ can be neatly discerned, and populations of people with intellectual, cognitive and psychosocial disabilities, as well as older adults, divided accordingly.
We have sought in this paper to undertake an examination of such law in light of the CRPD and its definitive challenge to the legally capable/incapable boundary when drawn on the basis of disability, and the border management across this divide. Our inquiry has led us to propose a legal framework for implementing the new paradigm for maximizing autonomy and the right to legal capacity instituted by the CRPD. Central to this framework is an approach that does not assume away the differences in people’s decision-making abilities. We have proposed a minimum threshold and set of principles that make expression of a person’s will and/or intention, even by others, the ground on which decision-making processes in health care, personal care and finance/property can justifiably rest. Consistent with a social model of disability, on which the CRPD rests, and which is increasingly recognized in legislation and case law, we have proposed ‘decision-making capability’ – as a combination of unique abilities plus supports and accommodations – as the focus of inquiry into what status is best suited for people to exercise their legal capacity.
We articulate distinctions between newly formulated statuses: legal independence, supported decision-making and facilitated decision-making. We recognize that these status distinctions are the determining feature in how a person exercises their legal capacity. Thus, we have suggested a set of guidelines for making these determinations. In addition, we propose a shared responsibility between the state and other entities for ensuring access to a range of supports in the decision-making process and for managing the duty to accommodate in this regard. As well, we propose a number of guidelines to guard against inappropriate placement in a particular decision-making status. We recognize that for those in a facilitated status, by virtue of this status, their right to exercise legal capacity is necessarily limited. While some may suggest we are playing in semantics, and that this is in fact simply substitute decision-making by another name, we think the distinction essential. Those in a facilitated status retain their legal capacity. Its declaration is not that a person does not have decision-making ability. Rather, it is that others are not able to discern a person’s will and/or intention sufficient to assist its translation into decisions and decision-making transactions. People in a facilitated status are owed obligations by the State and other entities to continue to provide supports and accommodations to enable greater understanding of a person’s will and/or intention, and thereby provide a basis for supported decision making, if not legal independence.
The legal framework presented in this paper is consistent with the decisive shift the CRPD directs in disability-related policy and programming away from paternalism and toward autonomy. The emphasis on autonomy and freedom to make one’s own decisions is infused in the CRPD’s preambular statements and runs throughout the Articles of the Convention. That said, the Convention also recognizes the need for safeguards given the vulnerability to rights violations that so many people with disabilities face. We have sought in this paper to explore how to manage this shift in the face of the abuse, neglect and harm to which people with disabilities and older adults are disproportionately victim; and also the risks and harms that others may face.
We have concluded that this re-balancing will not be accomplished without substantial legislative and institutional reform in legal capacity law, adult protection law and mental health law. To this end, we have proposed new institutional machinery to manage processes associated with ensuring adequate supports and accommodations, making determinations of decision-making status, and adjudicating disputes with respect to all of those decisions. In particular, we propose that involuntary commitment, in psychiatric or other facilities, in its current form, is in violation of the CRPD, and we recommend that physicians, simply by virtue of their health profession status, should no longer be empowered to make such decisions. We propose alternatives, including provision for those in a facilitated decision-making status to be admitted to acute care facilities at the request of their facilitators for assessment and treatment provided that certain safeguards are met.
Autonomy is a founding principle in a liberal-democratic society. As people with disabilities finally come to be recognized as full citizens, deserving of equal recognition in respect of all the human rights that attach to citizenship, new foundations for an inclusive society need to be built. In that effort, it is essential to confront the vestiges of an autonomy-denying paternalism still present in legal capacity and other laws. Some may suggest that the framework proposed in this paper tips the balance too much in the direction of autonomy in not ensuring that people who may be at risk to themselves or others are adequately protected and/or confined as some deem necessary.
However, we conclude that the CRPD advances autonomy and freedom to make one’s own choices as priority principles and imposes substantial obligations on State Parties and entities they regulate. In this paper, we have suggested that the price of protecting and advancing autonomy in a liberal-democratic society is essentially threefold. First, we must protect the negative liberty that enables dignity of risk. Second, we require a proactive legislative, policy and delivery framework that realizes positive rights for needed supports and services in the community which are delivered in ways that nurture autonomy rather than organize its banishment. It is time to fully extend dignity of risk to people with disabilities, and constrain their choices only to the extent that we constrain the choices of others. In doing so, and in recognizing the historic disadvantage, vulnerability, isolation and abuse that people with disabilities face in hugely disproportionate numbers, we must also ensure that support systems are in place that enable and nurture capability. Third, new institutional machinery is needed to ensure a much better balance between protecting autonomy and safeguarding against risk. This may require new investments, or re-investing current resources in new functions. Constraining risk is not the answer; enabling a supported autonomy is. And the price is worth the outcome.
The lens provided by the CRPD makes it possible to identify, examine and systematically confront paternalism’s hold in the lives of people with disabilities. It is incumbent on governments to do so as they take steps to meet the obligations the Convention sets out to ensure equal recognition of legal capacity without discrimination on the basis of disability. This paper is intended to assist in charting the many elements of that reform.
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