III. DISABILITY AND OLDER ADULT PERSPECTIVES ON AUTONOMY AND DECISION-MAKING

Laws relating to legal capacity and decision-making are important to all Canadians.  No one can ever be sure that they will not be considered under our current laws to be [mentally] incapable of acting legally independently – i.e. without the support of others, or substitute decision-making arrangements.  However, there are some groups of people whose lives are more often, sometimes routinely and substantially, altered by determinations that they are ‘mentally’ and therefore ‘legally’ incapable, with the consequent imposition of substitute decision-makers.  These include people with intellectual disabilities, psychosocial disabilities and older adults.  The principles and considerations to be applied to maximize people’s autonomy, which are set out in this paper, aim to address the perspectives and concerns of both people with disabilities and older adults, and their advocacy organizations.

A common refrain of these groups of stakeholders that must be addressed is the quest for autonomy, in the face of their reality of isolation, systematic discrimination and fear of losing independence.  Against this, concerns have been expressed relating to the potential cost to personal safety, well-being and life itself in the name of autonomy.  This is especially so for people who are vulnerable and lack social and other supports.  As cited above, the recent Final Report of the Ontario Legislative Assembly’s ‘Select Committee on Mental Health and Addictions’ is a recent example of how these concerns are being expressed in policy discourse today.

People with intellectual disabilities are particularly at risk of falling under one of the various forms of substitute decision-making because their disability is equated with limitations in mental functioning and associated adaptive behaviors and activities of daily living.  As a result, the national self-advocacy association of people with intellectual disabilities in Canada, People First of Canada, and the national family-based advocacy association, the Canadian Association for Community Living (CACL), have been actively advocating over the past 20 years for reform of Canada’s legal capacity and decision-making regimes, demanding laws which are more consistent with the manner in which many members of the community make and communicate their decisions.  At the founding conference of People First Canada, in 1991, the first resolution adopted by the membership was a call to end guardianship because of its violation of the right to make one’s own decisions.[66]  The CACL launched a Task Force on Alternatives to Guardianship at around the same time to propose directions for law reform consistent with the call by People First of Canada.[67]  A few years later a ‘Coalition on Alternatives to Guardianship’ was formed for which Orville Endicott and Kenneth Pike prepared a comprehensive background paper on alternatives.  The report laid out a systematic legal and philosophical critique of guardianship law and outlined elements of a legal framework for supported decision making, some of which we draw upon in this paper.[68]

The community living movement in Canada, led by CACL and People First of Canada and their affiliates, has promoted legal regimes which give recognition to supported decision making.  In their vision, supported decision-making enables people to maintain full legal capacity while availing themselves of legally recognized access to supports.  Community living organizations in Canada have actively participated in legislative reform as well as litigation, and some success has been achieved.  For example, British Columbia’s Representation Agreement Act[69] recognizes supported decision making and Ontario’s Divisional Court, too, has recognized the importance of the role of supports.[70]  The community living movement, both in Canada and internationally, actively promoted inclusion of Article 12 in the CRPD and recognition of the need for supports in exercising legal capacity.  Inclusion International, the international federation of national organizations advocating for people with intellectual disabilities, has issued a position paper calling for an end to guardianship and advancement of supported decision- making.[71] 

Views about decision-making models held by people with psychosocial disabilities and the psychiatric consumer/survivor advocacy organizations tend to emphasize features other than those of concern to other stakeholder groups. The consumer/survivor movement in the recent past has not been openly critical of Ontario’s current legal capacity laws.  In fact, to the contrary, many have welcomed the Supreme Court’s influential decision in Starson v. Swayze.[72]  The decision was an important affirmation of the right of a person with a psychosocial disability to make his or her own treatment decisions, even when they were believed by psychiatric professionals to be unwise.  In general, it sets a low standard for interpreting the Health Care Consent Act statutory test of capacity.[73]

At the international level, people with psychosocial disabilities and their organizations have been advocating for a reform to mental health and legal capacity laws to better protect and promote autonomy in the face of involuntary committal and treatment, and systematic restrictions imposed on legal capacity on the basis of ‘mental disorder’ provisions in law.  The World Network of Users and Survivors of Psychiatry advocates for much stronger protections for autonomy and for placing emphasis on access to supports for decision-making rather than the current focus in much mental health law on restricting liberty and choice based on assessment of a mental health ‘disorder’ and presumed ‘risk’ to oneself or others.[74]

The experience of the consumer/survivor community leads to some cautionary notes regarding any proposed framework which will impact on decision-making rights.   Firstly, in the Ontario context, a commonly-held negative perception about community treatment orders may shape ideas about appropriate decision-making models.  Community treatment orders are orders by a physician for a person to receive treatment or care and supervision in the community.[75]  They are legal alternatives to hospitalization, allowing people with psychosocial disabilities to live in the community with the requirement that they avail themselves of community supports.  Some see them as manipulative in that people only agree to them under a threat of hospitalization.  That is, either they agree to a community treatment order or their physician will admit them to a psychiatric facility involuntarily.  Therefore, from the perspective of the consumer/survivor community, any reform to legal capacity laws involving mechanisms for provision of community-based support and acute treatment will likely need to be completely voluntary, leaving all control to the person with the disability as to whether they access supports/treatment.

Secondly, an important reality for some people with psychosocial disabilities is that the people who support them both in personal care and in decision making, too, have psychosocial disabilities.  Any decision-making model that recognizes the role of supporters in decision making needs to ensure that there is no discrimination, intended or not, against some classes of decision-making supporters over others.  People with disabilities who support others must be given equal respect in their roles.

Lastly, some people with psychosocial disabilities, as well as people with intellectual and cognitive disabilities, find that third parties often have a preference to communicate with and accept decisions from people who accompany the person, rather than the person him/herself. This usually results from presumptions about limited decision-making abilities of people with disabilities.  Such a presumption must be guarded against in reforming law, policy and practice for health care and other decision-making.  That is, third parties must only accept decisions communicated by others if the person with the disability so chooses or legal authority exists to that effect.

Older adults, too, want their voices heard, and to be able to make decisions for themselves.  However, their fundamentally different lived experience, differing as it does from people with disabilities, results in a different vision of how the law would best achieve their goals.  Unfortunately, this difference in vision can have destructive results.  In relation to British Columbia’s guardianship reform efforts in the 1990s it was posited that failure to implement legislation resulted, at least in part, from a clash between disability rights theory and seniors’ rights theory.[76]

Supported decision-making, so important to people with intellectual disabilities and their advocacy organizations, is not on the radar of older adults.  Older Adults’ experiences of isolation significantly influence their views on legal capacity laws.  With isolation comes a lack of people with whom they interact, including people who could potentially support them.  At the same time, often with isolation also comes abuse.  Thus, the significant issue for older adults is abuse and neglect.  An important component of any decision-making regime would be the inclusion of a high level of review and oversight to address their concerns about abuse and undue influence.[77]   That said, a recent United Nations report examining issues of older persons from a global perspective calls for addressing elder abuse and other issues within a proactive human rights approach, and recommends a new international human rights mechanism for this purpose.[78]