by Gord Kyle

Note: The following article relies heavily on written materials and presentations by Audrey Cole.

It was well known that Audrey Cole always kept an ear to the ground about things that might have an impact on her son Ian. Knowing this, it was not uncommon for people to send her information they thought she would find interesting. In 1988, she received a document that would forever shape the direction of not only Audrey’s personal advocacy, but the advocacy of the entire community living movement in Ontario, across Canada, and eventually, around the globe. The work that came from Audrey’s efforts in responding to the document would result in one of the greatest advocacy achievements in Community Living Ontario’s history — changing the course of countless lives around the world. The document would also lead to one of the most frustrating advocacy stories we have ever faced here at home — a story of endless false starts and disappointments.

What Audrey received back in 1988 was a leaked copy of a document prepared for the Attorney General of Ontario by a government-appointed advisory committee chaired by a lawyer named Stephen V. Fram. The document, that came to be commonly referred to as the Fram Report, made recommendations to government regarding the province’s legal framework for substitute decision-making for “mentally incapable persons.” Audrey read the report through the lens of her son Ian to evaluate if the changes being proposed would be helpful to him. Substitute decision-making (guardianship) had always been a matter that concerned Audrey deeply. Above all else, she was committed to ensuring that Ian maintained control over his life despite his having severe disabilities. She was profoundly opposed to guardianship as it would strip away all such control, take away his legal personhood, and allow someone other than Ian himself to dictate the course of his life. On reading the report, Audrey concluded that its recommendations would do nothing to protect or enhance Ian’s rights. She wrote a letter to the President of Community Living Ontario, Bill Nicholls, voicing her concern. In response, Community Living Ontario launched a task force on alternatives to guardianship and, as such things go in a voluntary organization, asked Audrey to lead the group.

Meanwhile, the government struck the Guardianship Review Committee chaired by Bernard Starkman to receive and consider responses from the public with respect to the Fram Report. In 1989, the association’s task force on guardianship presented a brief to the review committee expressing its concerns with the concept of guardianship. The association called on the committee to recommend the introduction of legislation to support and enhance individual decision-making rights rather than remove rights and force people into guardianship.

Concerns about the impact of guardianship were not new. It had been on the agenda of the movement for decades prior to Audrey’s receipt of the leaked Fram report. As far back as 1969, our international organization (today known as Inclusion International) held a symposium on guardianship in San Sebastian, Spain. The report of that symposium suggested mentoring as a tool for improving guardianship.

In 1974, Community Living Ontario, along with the Ministry of the Attorney General and Ministry of Community and Social Services, conducted a project known as the Hamilton Guardianship Project. That project found that where a person was provided with personalized community supporters, applications for guardianship dropped significantly. The findings of the project lead to the establishment of the Adult Protective Service Workers (APSW) program in Ontario and provided another stepping stone in understanding the role of support in decision-making as an alternative to guardianship.

In 1982, Justin Clark decided that he wanted to move out of the Rideau Regional Centre where he was a resident. His father, in a bid to stop him, launched court action against Justin under the Mental Incompetence Act. With the help of friends and supporters, including members of Community Living, Justin convinced the judge that he was not mentally incompetent and was able to make and communicate his decisions with support and with technology for overcoming his limitations in communication. Justin was allowed to move from the institution a year later.

Community Living Ontario’s task force on alternatives to guardianship, under Audrey’s chairmanship, considered what we had learned over the years about mentoring and support as an alternative. These stepping stones provided a path towards the idea of supported decision-making that the task force outlined in the late 1980s. The foundational idea as articulated by Audrey is this:

Every person, no matter how severe his or her disability, can maintain control over his or her life solely by means of the commitment that other people are willing to make to that person’s well-being: people should be enabled and supported to maintain that control.

In 1991, the government moved forward with legislative reform to the guardianship laws in Ontario. Three acts were tabled: the Advocacy Act, the Substitute Decisions Act, and the Consent to Treatment Act. Community Living Ontario prepared a brief responding to the proposed legislative changes and presented the brief to the Standing Committee on the Administration of Justice in February 1992. Later that year, Community Living Ontario submitted an additional brief in response to amendments to the acts that had been proposed by the Standing Committee.

The proposed legislation did not go nearly as far as we wanted in establishing alternatives to guardianship, and did not include provisions for supported decision-making. We pointed out in our brief and presentation the discriminatory practices contained in the legislation, and we proposed principles for decision-making that would not disadvantage people with disabilities.

Audrey recalls that as the date for the vote on the legislation approached, we were provided with what we thought were assurances that both the Attorney General and his Parliamentary Assistant were “sympathetic” to supported decision-making and were very open to seeing it come forward as “complementary” to the proposed Substitute Decision Act.

While Community Living Ontario continued to press the drafters of the legislation for changes, People First Ontario was active with its own efforts, marching on the Legislature and threatening to camp out on the lawn until the government agreed to include the changes to the legislation we wanted to see. While we failed to get supported decision-making included in the legislation, a proposal we made regarding the inclusion of a prohibition clause was included. Under the act, a judge is expected to ensure that, before imposing a guardianship ruling, there is consideration of other options that would be less “restrictive of the person’s decision-making rights than the appointment of a guardian.” We hoped that in the absence of the specific inclusion of supported decision-making provisions in the act, this prohibition clause would lead to the exploration of alternatives and would allow for supported decision-making as an alternative.

The Advocacy Act, the Substitute Decisions Act, and the Consent to Treatment Act became law in 1992. But, three years later, in 1995, the government changed. The newly elected Harris government undid much of the legislative legacy of the previous Rae government. The new government introduced Bill 19, Advocacy, Consent and Substitute Decisions Statute Law Amendment Act, 1996. Bill 19 repealed the Advocacy Act and Consent to Treatment Act and replaced them with the Health Care Consent Act, and made changes to the Substitute Decisions Act. Fortunately, the prohibition clause we had advocated for was retained in the Substitute Decisions Act and included in the newly tabled Consent to Treatment Act.

The repeal of the Advocacy Act was a serious blow to our agenda as it removed many critical individualized supports that would have been available to help people with decision-making. Adding to our disappointment, the prohibition clause had little impact. It has been largely ignored by judges and never created the hoped-for avenue for supported decision-making. Three decades after the implementation of the act, guardianship orders continue to be made without an exploration of alternative courses of action.

In 1992, as Community Living Ontario continued its provincial efforts for legislative reform, the Canadian association formed a task force to formally describe a model of supported decision-making, advancing the work that Community Living Ontario had been doing through its own task force. The national task force proposed a framework for supported decision-making that Community Living Ontario adopted. People First Ontario and People First Canada were also working on the issue and collectively we began to advocate for changes to the proposed legislation in Ontario. These four organizations joined together as The Coalition on Alternatives to Guardianship and have continued to work jointly on the issue since.

Article 12 of the UN Convention on the Rights of Persons with Disabilities

In 2006, the United Nations developed the Convention on the Rights of Persons with Disabilities. The convention was to include an article dealing with the matters of legal capacity and guardianship. According to Diane Richler, then–President of Inclusion International and former Executive Vice President of the Canadian Association for Community Living (now Inclusion Canada), other disability groups involved in the negotiation of the convention wanted a clear prohibition on all forms of substitute decision-making. They wished to ensure that the convention protected the rights of people with disabilities to speak for themselves without intervention by any other person. Community Living’s representatives to the negotiations were concerned about how, under such a provision, individuals who had an intellectual disability and needed support could have their will respected in systems where they were expected to simply express their own wishes. Representatives from Inclusion International and the Canadian Association for Community Living proposed the concept of supported decision-making for inclusion in Article 12. It was difficult to convince other disability groups to consider this alternative to guardianship given the desire for an outright elimination of substitute decision-making. In the end, our representatives successfully articulated the harm an outright ban on anything other than autonomous decision-making would cause to people who needed support and convinced the other disability groups to insert a support provision. Clause three of Article 12 was included, stating that “States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.” Supported decision-making, which had its genesis here in Ontario, had now been embedded in international law. The convention has been adopted in 186 countries — including the provision for supported decision-making. Canada ratified the Convention in 2010.

Seeking the establishment of Article 12 in Ontario

The Law Commission of Ontario is a non-government legal body that provides advice to the government on law reform matters. In 2012, the Law Commission released two reviews of provincial laws — one related to seniors, and a second pertaining to people with disabilities. Both reviews identified deep concerns about the current framework of laws in Ontario related to issues of legal capacity and guardianship. As a result, in 2013, the Law Commission began an in-depth review of capacity and guardianship laws with the intention of making recommendations to the government about needed changes. Community Living Ontario saw this as an excellent opportunity to advance our work on supported decision-making. Given the recent ratification of the UN Convention by Canada, the timing was perfect for promoting clear action to implement the provisions of Article 12 in Ontario. We contacted the Law Commission and were granted two positions on the advisory groups being established for the project. I filled one of these positions. The second position was filled by Orville Endicott, who was legal counsel to Community Living Ontario at the time and one of the people who had worked on the issue of supported decision-making with Community Living since the work began in the late 1980s. Orville retired in 2014 before the work of the Law Commission advisory group ended. Brendon Pooran, a lead lawyer at PooranLaw and longtime supporter of Community Living’s work on legal capacity, joined me in representing Community Living Ontario for the balance of the process.

If we had expected it would be easy to convince the Law Commission to recommend the inclusion of a legal framework for supported decision-making, our hopes were soon tempered. The advisory group included people who had been working on the issues of guardianship since the days of the Fram Report in the 1980s. Many in the group were lawyers who had worked with the legal framework introduced in the ’90s and their interests were largely in adjusting the provisions that were already in place to address various systemic issues. Changing and updating the existing substitute decision-making framework was an immense undertaking and there was little appetite or imagination from many of the other participants for considering additional new provisions that might provide alternatives to traditional substitute decision-making. While participants acknowledged our call for the inclusion of supported decision-making as an alternative provision, the most outspoken members of the advisory argued that appropriate improvements to existing guardianship laws would serve to negate our concerns about the risks faced by people. They argued that proper substitute decision-making would take into full account the wishes of the person for whom decisions are being made; therefore, supported decision-making would not be needed. Little attention was paid to the fundamental stripping away of one’s personhood when a person’s right to direct his or her own life was removed by guardianship.

To support the efforts of Community Living Ontario’s representatives on the advisory table, and to respond to public consultations being hosted by the Law Commission, we reconvened the Coalition on Alternatives to Guardianship that we had created in the early ’90s. Membership of the coalition included Community Living Ontario, the Canadian Association for Community Living (Inclusion Canada), and the Provincial and National People First organizations. We also invited other legal experts and Audrey Cole to work with us on our response to the process.

The law review process occurred in steps. In 2014, the Law Commission circulated a public consultation document. In 2015, it released an interim report, and in March 2017, a final report. We responded to the consultation process in 2014 through the Coalition on Alternatives to Guardianship, with our focus being on the implementation of a legal framework for supported decision-making.

When the interim report came out in 2015, we were deeply disappointed. After two years of work at the advisory table and endless additional meetings with the Law Commission to work through details of how to implement the alternatives to guardianship that we were proposing, the document included nothing of substance to address our recommendations. In fact, recommendation three of the report was that “the current Ontario approach to legal capacity, based on a functional and cognitive approach, be retained.” This provision, which would serve to frame the other recommendations in the report, locked the system to the same path that was in place under the 1992 laws.

It was clear that our current approach was not working; we were not being listened to. We decided on a change of strategy. We acquired the support of two international legal experts who had both been involved in the negotiations of the UN Convention. We asked each for a legal opinion with respect to the Commission’s interim report. Specifically, we asked each of them to consider the following: should the Commission’s recommendations be implemented into law, would the resulting legal framework comply with Canada’s obligations under the UN Convention on the Rights of Persons with Disabilities?

Each of these two experts provided their opinions based on expertise in existing disability law and its intersection with international human rights law. Each expert also had an in-depth knowledge of the history and negotiations leading up to the coming into force of the Convention on the Rights of Persons with Disabilities. Dulcie McCallum, being a Canadian lawyer, grounded her opinion in the Canadian and Ontario legal context. Arlene Kanter, Professor of Law at Syracuse University College of Law, based her legal opinion on her experience, expertise, and comparative legal research in disability law, international human rights law, and the UN Convention.

As we expected, both legal opinions aligned with our conclusion that the recommendations of the interim report were not in line with the Convention and would not meet Canada’s, and therefore Ontario’s, obligations. Ms. McCallum, based on her deep understanding of domestic law (she had at one time served as the provincial Ombudsman for British Columbia), went further to say that in her opinion, the recommendations were not even compliant with some provisions of national and provincial human rights law.

While the Law Commission was clearly taken aback by our strong and negative response to the interim report, it was unfortunately not significantly persuaded by our submission. In fact, in a conversation I had with one official from the Law Commission shortly after we released these opinions, she stated that many laws are enacted that do not comply with UN Conventions. To this I responded that this may be the case, but surely the Law Commission was not going to recommend to the government changes that did not align with its obligations under international law. I received no reply to this statement.

When the final report of the Law Commission came out in early 2017, some changes had been made in response to the concerns we raised, but, overall, it remained largely focused on the status quo. While we were, of course, anxious to see action by the government on the issue of guardianship, we were oddly relieved in the months following the release of the Law Commission’s report that the government did not seem to be moving quickly on the recommended changes. A few months after the release of the report we met with Ontario’s Attorney General to provide our views on the report and to encourage moderation in how the government responded. We were surprised to learn that the Attorney General and his staff were unaware of the report and had therefore taken no steps to act on the recommendations. Sometimes government inaction is the most helpful action possible.

Supported decision-making and the Registered Disability Savings Plan

There is one important side note to this work with the Law Commission. In 2014, Community Living Ontario met with the Attorney General to raise concerns about issues of legal capacity and the Registered Disability Savings Plan (RDSP). We were very concerned that many people were missing out on investing in this generous program because of rules about opening and managing the plan that related to a requirement for the plan holder to be deemed “contractually competent.” Many people who have an intellectual disability cannot meet this test and can therefore not open a plan without a guardian to act on his or her behalf. When this problem was brought to the attention of the federal government, it insisted that the issue of contractual competency was a provincial matter that could not be addressed at the federal level (a position we disagree with). In order to make it possible for people impacted by this provision to access the RDSP, the federal government created a provision that plans could be opened by a parent or spouse. This provision, however, was intended to be short-term to give provinces time to adjust their laws to address the problem. Community Living Ontario does not support this provision being established on a permanent basis as it does not solve the problem of people being at risk of guardianship. Should a parent open an RDSP on behalf of their son or daughter who is deemed to not be contractually competent, a guardian will still need to be appointed when the parent dies to manage and access resources in the plan.

At our meeting with the Attorney General, he said that he thought that this issue had been addressed. We assured him that it had not, and given that the federal provision would end in less than two years in 2016 (it has been extended several times since and is still in place), there was considerable urgency for the province to address the matter.

Shortly after our meeting, the Attorney General asked the Law Commission to investigate the matter and provide its recommendations. The Law Commission struck another advisory group, running parallel to the main advisory group looking into guardianship, and Community Living Ontario was again provided two positions on that advisory group.

The interesting thing is that the recommendations of this short-term advisory process on RDSP issues yielded recommendations that were consistent with what Community Living Ontario had been calling for. That report recommended that if a person was deemed not contractually competent to open an RDSP, he or she be allowed to appoint a legal representative (someone to support them in their decision-making). The report identified requirements for making such an appointment that would be reasonable for many people who have an intellectual disability to meet. One proposed mechanism was to use a provision contained in the British Columbia representation agreement legislation of 1996. This is a mechanism allowing for supported decision-making that the Law Commission rejected in its main study of guardianship. The B.C. provision would allow a person to appoint a representative to assist them in opening an RDSP but would not require that a person demonstrate that they understand and appreciate the complexities of the RDSP.

We found it fascinating and very frustrating that one process undertaken by the Law Commission could yield such a positive recommendation, while the other primary study of legal capacity rejected such approaches.

In the end, the federal government has continued to extend the short-term provision it put in place for the RDSP, and the Ontario government has been under no pressure to enact change and has not to date implemented the Law Commission’s recommendations.

Conclusion

No issue has more profound implications for the aims of the community living movement than that of ensuring the right to personhood and the right to control decisions about one’s life. The notion of guardianship has been included in legal systems across the world for centuries. It is deeply embedded and seldom challenged. If there is doubt about the capacity of a person to make reasonable decisions about their life, common wisdom has concluded that the proper and humane thing to do is to appoint someone else, a guardian or substitute decision-maker, to make the decision for the person. This, of course, ignores the damage done to a person when they are stripped of their personhood and their right to make decisions for themselves.

Supported decision-making has been embedded into laws in many countries around the world and has been set down in law in provinces and territories across Canada. In Ontario, however, we continue today to fight for laws supporting this concept that was developed and first proposed by us more than 30 years ago. Our provincial government continues to ignore the issue even though, during one meeting with Community Living Ontario in the early 2000s, Minister of Community and Social Services Madeleine Meilleur, herself a lawyer, responded positively to our ideas. She told us that reports about the abuse of substitute decision-makers against people with disabilities supported by her ministry was one of the most frequent forms of complaint that came across her desk.

Guardianship represents a particularly insidious threat to people who have an intellectual disability. As much as any other group, and far more than most, people who have an intellectual disability are likely to be deemed incapable of directing their own life. Immediately upon reaching the age of majority, the risk of guardianship exists and increases dramatically as the person ages and the person’s parents and family age and die. Many life activities, even mundane ones like changing one’s address with the Canada Revenue Agency, can result in roadblocks that might trigger guardianship. Given that an intellectual disability is life-long, it is nearly impossible to prove one’s competency and reverse a guardianship order once it is applied. Resistance to change has been deeply entrenched by the policymakers and gatekeepers of guardianship. Even while they often agree that guardianship diminishes personhood, they appear unwilling to engage in any significant attempts to imagine alternative approaches.

Back in the late 1980s, Community Living Ontario reimagined guardianship and sought alternatives. While we have not, after more than 30 years of work on the issue, secured meaningful changes to our own legal systems in Ontario, the work we have done has had a profound impact internationally. In the fall of 2016, I attended a panel presentation held at an Inclusion International conference in Orlando, Florida. Panelists reported on law reform in various parts of the world aimed at implementing supported decision-making in keeping with Article 12. After a gentleman from the state of Texas presented on recent changes to their legal system to implement supported decision-making, Brendon Pooran from PooranLaw in Ontario reported on the absence of reform in Ontario. The presenter from Texas was shocked, stating that the law reform in Texas was based on Community Living Ontario’s framework for supported decision-makin, a framework that he presumed was embedded in Ontario law.

In the summer of 2019, I was invited to attend a meeting with the Special Rapporteur on Disability Rights of Persons with Disabilities for the UN, Catalina Devandas. The purpose of the visit by the Special Rapporteur was to explore various aspects of Canada’s progress in implementing the Convention. Audrey Cole was present at this meeting, this being the first time Ms. Devandas had met Audrey. Ms. Devandas was well aware of the history of supported decision-making in Ontario and in particular, the role that Audrey played in evolving the concept. Ms. Devandas expressed how deeply moved she was to meet Audrey in-person and acknowledged the profound impact that Audrey’s work on supported decision-making has had on the rights of millions of vulnerable people around the world who have been granted a reprieve from the threat of guardianship and have retained control over their lives.

Audrey’s son, Ian, died in November 2021, never enjoying the opportunity of living in a province that recognized in law his right to retain his legal capacity. Despite this, through Audrey’s dogged determination, and with the help of Ian’s many friends and supporters, he lived his life free of the sting of guardianship. Audrey today is 95 years old and still hopes that she will live long enough to see the idea she gave to the world all those years ago become a reality in her home province.