A. Rationale for Research

1. The Law Commission of Ontario Project on Legal Capacity, Decision-making and Guardianship

In 2012 the Law Commission of Ontario (LCO) commenced a two to three year law reform project on legal capacity, decision-making and guardianship in Ontario. The law reform inquiry considers the existing legal framework that applies to circumstances where adults may have challenges that impact on their ability to make decisions, including the experiences of people with cognitive, intellectual, mental health or other disabilities. The LCO project explores current mechanisms and standards for assessing capacity, legal processes and legislation concerning the designation of substitute decision-makers, and the regime governing powers of attorneys in Ontario, including provisions concerning advance planning. The project will examine Ontario legislation such as the Health Care Consent Act[9], the Substitute Decisions Act[10] and the Mental Health Act[11]. In undertaking this inquiry the LCO project applies its recently developed A Framework for the Law as it Affects Persons with Disabilities[12] and A Framework for the Law as it Affects Older Adults[13], with the goal of considering the issues in a manner that recognizes the experiences of, and the barriers negotiated by, both people with diverse disabilities and older adults, including the evolving experiences of people with disabilities as they age.

The principles of both of the LCO Frameworks emphasize the importance of understanding the “implementation gap between the law as drafted and the law as applied.”[14] The Frameworks also endorse a “person-centred approach” that considers how people experience the law, given their unique and evolving abilities and disabilities, and the different ways systemic barriers connected to identity and privilege impact on access and experience.[15] This research initiative on supported decision-making, which explores the lived experience of supported decision-making by talking to both experiential and professional experts, seeks to apply both these principles.

This research initiative on supported decision-making was commissioned as part of the LCO project on legal capacity, decision-making and guardianship. In total six research papers were commissioned. The full list of researchers and topics can be found on the Legal Capacity, Decision-making and Guardianship project webpage.[16]

 

2. The International Context: UN Convention on the Rights of Persons with Disabilities

The Convention on the Rights of Persons with Disabilities (CRPD),[17] adopted by the United Nations on December 13, 2006, and ratified by Canada on March 11, 2010, signaled the creation of a comprehensive international human rights treaty focused specifically on promoting, protecting, and ensuring the full and equal enjoyment of all human rights and fundamental freedoms by all people with disabilities, and promoting respect for their inherent dignity.[18]

The CRPD not only promotes human rights equality and non-discrimination, but requires that party states create a framework ensuring accessibility for, and independence of, people with disabilities. The sections of Article 9 dealing with physical accessibility have been largely adopted in Canada’s provincial and federal human rights acts and codes. One clause in particular, section 2(f) of Article 9, which requires ensuring people with disabilities access to their personal information, is an issue with implications for Canadian supported decision-making legislation.

Article 19 of the CRPD focuses on ensuring people with disabilities have the ability to live independently and be included in the community. It reads:

States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.[19]

Based on the guiding principles of dignity and freedom, the Convention seeks to protect a person’s right to have the opportunity to choose where they live, with whom they live, which community services and recreational activities they take part in, and make other fundamental life decisions. For the most part, the clauses of Article 19 have since been included in Canadian supported decision-making legislation to assure a supportive decision-maker’s ability to assist the supported adult with these types of decisions and assure their independence.

a. Article 12 of the CRPD

Upon originally signing the treaty in 2007, Canada declared reservations with respect to the Convention’s Article 12, which requires equal recognition of people with disabilities before the law. The language of the article encompasses mental capacity and decision-making rights. It states:

Article 12 – Equal recognition before the law

States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law.

States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.

States Parties shall take appropriate measures to provide access by persons with disabilities to support they may require in exercising their legal capacity.

States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person’s circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the person’s rights and interests.

Subject to the provisions of this article, States Parties shall take all appropriate and effective measures to ensure the equal right of persons with disabilities to own or inherit property, to control their own financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit, and shall ensure that persons with disabilities are not arbitrarily deprived of their property.[20]

In effect, the article requires that all people, regardless of disability, be accorded the right to make their own decisions, and be provided the support required to exercise their decision-making autonomy. Canada anticipated that this section could be interpreted in a manner that required the elimination of substitute decision-making. As a result, it reserved the right to continue the use of substitute decision-making arrangements in appropriate circumstances and subject to their existing regulations and safeguards.

The recent passage of the CRPD, ratified by Canada in March 2010, has thus increased the attention on the BC approach to supported decision-making. The Convention prioritizes the promotion and protection of the dignity and respect of persons with disabilities, including the removal of barriers that impede on the full and effective participation in society. The language of the CRPD raises the question of whether the notion of guardianship is fundamentally and inherently a form of discrimination based on intellectual or mental disability, and highlights the need to consider alternative approaches that allow people with cognitive and other challenges to participate, and take leadership, in decisions that impact their lives.

3. The Canadian Context: A Brief History of Supported Decision-making in Canada

Canada is internationally recognized for its leadership in implementing supported decision-making legislation. Many Canadian jurisdictions have enacted legislation that recognizes supported decision-making in a variety of forms, with the British Columbian Representation Agreement Act[21] being one of the first in the world to address supported decision-making in a self-contained statute, outside of a guardianship context. For that reason, the law is considered to create a pioneering model for supported decision-making. The Act took effect in 2000.

The British Columbia model allows a person to designate a supported decision-maker by agreement, formalizing the ability of a trusted individual to assist another adult in making basic decisions. The legislation is designed to allow any person who meets the capacity threshold to enter into a representation agreement; in other words, the legislation does not reference disability, a factor which has been identified as a strength of the legislation:

… many disability rights activists view [the Act] as “normalizing” insofar as it neither singles out nor excludes [people with disabilities] as a group. For many members of the disability rights community, part of the advantage of representation agreements is that they are not disability-specific, and they do not marginalize persons with challenges. They are broad documents that any adult can use in order to nominate a substitute [or supportive] decision-maker and to make their wishes known. An empowerment and normalization theory underlies representation agreements.[22]

In British Columbia (and some other jurisdictions), these agreements are made privately between the parties, and require no involvement of the courts, being initiated by the adult needing support. The Representation Agreement Act allows an adult to appoint substitute or supported decision-makers provided the adult can meet the capacity standards set out in the legislation. The Act imposes lower capacity standards than appear in other statutes, standards that can be met by adults who would not likely meet the capacity requirements to create other personal planning documents, such as powers of attorney.

The creation of the Representation Agreement Act owes much to the advocacy of community organizations who sought legal recognition for existing helpers who provide crucial support to adults with disabilities, and an alternative to the existing guardianship regime. The guardianship model in British Columbia (under the Patients Property Act)[23] requires a legal determination that a person lacks capacity in order for a decision-maker, called a Committee, to be legally recognized (as a substitute decision-maker). The Act does not recognize supported decision-making. This committeeship process instigates an often intrusive evaluation of the adult’s capacity, and results in a loss of decision-making rights.

Since the Representation Agreement Act became law in British C