A. Research Question
The right of a person to make her own decisions has been characterized as an essential aspect of citizenship in a liberal democratic country. However, disability—and sometimes, more importantly, public perception of the mental capacity of people with cognitive, mental and developmental disabilities—can present limitations on their ability to make decisions that reflect their true values and wishes. Supported decision-making legislation provides a framework for formal legal recognition of one or more of the people who are crucial to an adult’s decision-making processes, sometimes allowing them to speak on behalf of the adult. The approach is valued for significantly enhancing the self-determination and dignity of people with disabilities, allowing them to participate in decisions that impact their lives in circumstances where they might not otherwise have the legal or cognitive capacity to make decisions independently.
Internationally, British Columbia’s Representation Agreement Act is recognized as pioneering legislation, being one of the first legal regimes for supported decision-making. The Act was proclaimed in 2000, and since that time there has been little research published on the experience of using supported decision-making in British Columbia or the other Canadian jurisdictions which followed suit in creating legislation that recognized supported decision-making relationships. This paper summarizes our findings from a short research initiative on supported decision-making. The research engages people who have participated in supported decision-making—both professionally and personally—in order to enhance our understanding of how supported decision-making occurs in practice, within diverse communities. The goal of this research project is to share strategies and practices that enable supported decision-making to be an appropriate, effective and empowering tool. Many factors—such as the vulnerability of many of the people who make use of supported-decision-making in their daily lives, and the importance of protecting the right to self-determination—suggest a need for this inquiry.
This paper explores the lived experience of supported decision-making in Canada. Diverse communities have wisdom to offer that can help us to understand how supported decision-making can be best utilized, and how various programs and practices can be enhanced to make the approach more accessible, if not also safer, for different communities.
B. Research Scope
This research initiative involved three levels of inquiry:
- A review of legislation in Canada that addresses supported decision-making;
- Telephone interviews with key informants from British Columbia, Yukon, Alberta, Manitoba and Saskatchewan who have professional or practice expertise in relation to the use of supported decision-making in those jurisdictions; and
- Interviews with people in British Columbia who have participated in supported decision-making personally, using representation agreements, including:
a. Supported decision makers—ie, individuals using supported decision-making to make their own decisions, and
b. Supportive decision-makers designated under representation agreements—including representatives and family caregivers
The time constraints of the funder required the research to be conducted in four months. As a result, this paper must be understood as an initial scoping of the issues involving some key practitioners and a small number of individuals with personal experience using supported decision-making. Our hope was to explore a number of issues in order to ascertain whether further inquiry is warranted, and to interview a much greater and broader sample of informants with personal experience using supported decision-making in a subsequent inquiry.
C. Overview of Findings
This section contains a brief summary of findings. More thorough discussion can be found in sections II to IV of this paper.
1. Review of Legislation
Five Canadian jurisdictions were included in this research: British Columbia, Yukon, Alberta, Saskatchewan and Manitoba. These provinces and territories have all passed legislation that references supported decision-making. On review, while the Vulnerable Persons Living with a Mental Disability Act of Manitoba references support networks and supportive decision-making, there is no statutory regime for supported decision-making created through this Act. Research indicates, however, that supported decision-making occurs informally in the province, without statutory protection.
British Columbia is the only jurisdiction that has passed a self-contained statute addressing supported decision-making; in the three other jurisdictions supported decision-making is recognized in legislation that addresses both guardianship and supported decision-making.
Although supported decision-making is statutorily recognized in British Columbia, Yukon, Alberta and Saskatchewan, there is significant variety across jurisdictions. The three key differences are:
- How arrangements are put in place—particularly as to the extent to which court processes are required;
- Terminology—different terminology is used to refer to the supportive decision-makers, and sometimes the same term is used in different jurisdictions to denote a very different kind of relationship; and
- Scope of powers—particularly as to whether personal, health care and/or financial decisions may be included in the arrangement.
This brief summary covers these three issues. Greater detail on each jurisdiction is found in section II of this paper.
a. How Supported Decision-making Arrangements are Put in Place
In British Columbia and the Yukon supported decision-making relationships are exclusively created by agreement, without court intervention. In Alberta a kind of supportive decision-making is possible through either agreement or court order. In Saskatchewan formal supported decision-making is only possible with court intervention.
b. Terminology around Supported Decision-making in Canada
In British Columbia the supportive decision-maker is a called a representative; however, the same statute allows an adult to appoint a substitute decision-maker by agreement. Both decision-makers are called representatives, so strictly speaking a representative may be a substitute or supportive decision-maker, depending on the terms of the agreement. In the Yukon, the supportive decision-maker is called an associate decision-maker; however, the same statute allows an adult to appoint a substitute decision-maker by agreement and this decision-maker is also called a representative. So in Canada a representative could be a substitute or supportive decision-maker.
Under the Adult Guardianship and Trusteeship Act of Alberta, there are arguably two different kinds of supportive decision-makers: a supporter or a co-decision-maker. A supporter relationship is created by agreement via a document called a supported decision-making authorization, and appears on the face of the statute to create a relationship similar to the approach taken in British Columbia and the Yukon.
In Alberta and Saskatchewan there is generally greater court involvement in supported decision-making. In Alberta, a co-decision-maker may be appointed by the court in circumstances where the adult’s decision-making capacity is significantly impaired, and the adult would have capacity to make the personal decisions at issue if provided with support and guidance. The court must be satisfied that the adult consents to the order and appointed decision-maker. Capacity is determined by a court appointed capacity assessor.
In Saskatchewan the supportive decision-maker is called a co-decision-maker as well. However, on review of the legislation it is questionable to characterize the approach as creating an authentic supported decision-making relationship: the arrangement can only be put in place by order of the court, on application, and it is not clear that the adult whose autonomy is at issue may even be an applicant.
c. Scope of Powers
In terms of scope of powers, in British Columbia the supportive decision-maker may be granted the power to make decisions regarding personal care, routine management of the adult’s financial affairs, instructing counsel, and some health care decisions. There are specific exclusions in the statute regarding health care consent, including the use of physical restraints. In Yukon the statute is silent regarding the types of decisions that may be included in a supported decision-making agreement. In Alberta the authority of a co-decision maker is limited to personal decisions, but the meaning of “personal” appears to capture health care decision-making—only financial decisions seem to be excluded. In contrast the scope of powers covered by a supported decision-making authorization in Alberta is not limited by statute. In Saskatchewan powers are extremely broad, specifically including chemical and physical restraints.
2. Summary of Interviews with Key Expert Informants
We interviewed 20 key informants from Manitoba, Saskatchewan, Alberta, British Columbia and the Yukon. Experts from government, offices of the Public Guardian and/or Trustees, lawyers, advocates and members of non-profit organizations which support persons with intellectual disabilities were included in the process. A minimum of three interviews was held in each jurisdiction, with cross-representation. Interviews were conducted on a confidential basis and were very frank in nature. Below are some themes that emerged from the discussions. Underlying many of the themes is a lack of awareness of supported decision-making across sectors and communities.
a. There is a tension between people who understand supported decision-making as a system that supports and enables “everyday” or familial decision-making practices, and those who understand supportive decision-making as a specific legal framework. The former is well-acknowledged and agreed upon. The latter is a source of struggle and some difficulty. This philosophical difference appears to be the root of much of the confusion and worry about supported decision-making. On the whole, people who view supported decision-making as a formalization of everyday decisions seem less likely to worry about abuse or liability. For people who view it as a specific legal framework, implications of abuse, fiduciary obligation, liability and “what ifs” are more pervasive.
b. People do not even understand substitute decision-making, let alone supported decision-making. Supported decision-making is a good idea, but without focused, ongoing and excellent public and professional education, the systems matter little. Every single expert informant identified the lack of training and education across the professional and community spectrum about decision-making in general to be of primary concern.
c. Even if it is not well understood, or very often adopted, supported decision-making is an important option for self-determination, dignity and rights. Informants had nearly unanimous agreement that even if supported decision-making had low uptake and presented some practical challenges, the legislative option was an important avenue for persons with cognitive impairment to express personhood and to maintain dignity. There is a difference which can be drawn between “good law” and “good uptake” or understanding of the law. Experts agreed that the challenges inherent in the “roll-out” of these laws, the steep learning curve required to understand them and the challenges inherent in decision-making in general, should not be conflated with the rightness of the law itself.
d. Supported decision-making currently works for a limited number of people—predominately younger adults with “mild to moderate” intellectual disabilities, who have actively engaged circles of support. The practice of supported decision-making can be an important part of self-determination. Where supported decision-making works is where very active and committed families are engaged in a circle of support, and use this legal arrangement to empower the adult with intellectual disabilities. Only two informants suggested that supportive decision-making would have robust use for older adults who had cognitive impairment due to dementia. Informants suggested that supported decision-making did not yet have much uptake amongst other groups who might benefit, such as those with psycho-social challenges, people with drug or alcohol addictions, people with post-traumatic stress or persons living with brain injury.
e. Despite supported decision-making regimes in place, people still seek plenary guardianship over people with capacity challenges, or “make do” with nothing at all. Because of practicalities—including significant cost and dealing with third party institutions—supporters of persons with capacity challenges still often seek the broadest possible plenary powers provided by guardianship (or, where an adult has capacity, to make a power of attorney). Alternatively, because of the high cost of guardianship orders, informants indicated that a lot of supported decision-making is done on a very informal basis; consequently, supportive decision-making is untracked and difficult to research conclusively.
f. Just having a supported decision-making regime in law is not enough—education across the continuum of decision-making is required. Uptake of supported decision-making is higher when the system is easy, low-cost and a great deal of education surrounds the regime. There was consensus that both non-profit organizations and government need to work together in a focused way to ensure that supported decision-making, substitute decision-making and guardianship are understandable concepts, with workable and accessible entry points. Supported decision-making is most understandable as part of a continuum of decision-making by, and for, adults with cognitive impairment.
g. Third parties, such as financial institutions, often feel uncomfortable dealing with supported decision-making documents, unless there are strong relationship between the family and the financial institution. Supported decision-making documents work best when the individual and corporate third parties know and trust each other. Otherwise, third party institutions are likely to be confused or untrusting of these documents—this is often the reason that guardianship orders are sought. If the supported decision-making document is not understood, or the perceived risk to the financial institution is too high or uncomfortable; then the family or supporters are often placed in a situation where they must choose between not accessing the third party services or products, or going to court to get a guardianship order. The latter approach means declaring the person with cognitive impairment, incapable of making decisions. This outcome is often the very one which the person with cognitive impairment and their supporters was trying assiduously to avoid.
h. In some cases, it is too early to tell how supported decision-making will work in practice. In Alberta, in particular, the supported decision-making regime seems to be working well. Tracking is taking place where possible. However, it is too early in the process to see exactly what uptake or roadblocks will result.
i. Individuals and third party institutions need practical training to help people understand how to do supported decision-making. Two separate issues were expressed here. First, the large majority of informants indicated that the concept of supported decision-making was compelling, but there are no training materials or programs which are widely available. Such training would help supported decision-makers understand how to ask questions, and how to be supportive rather than substituting their decisions onto the person with the agreement. Skill development opportunities were identified as an important next step. Further, members of organizations which support persons with intellectual disabilities expressed the related concern of “slippage”—which was to use supported decision-making systems to actually engage in substituted decision-making. It was noted that in a way, this was a more insidious version of substitute decision-making, in that it claimed to be the will of the person with intellectual disabilities, but was in fact, the will of the other person imposed and rebranded.
j. The promise and concept of supported decision-making is very appealing and should be promoted in accordance with Art. 12 of the UN Convention on the Rights of Persons with Disabilities. There was unanimous agreement that the ideals of supported decision-making were the way of the future. There was broad agreement that even if supportive decision-making agreements did not work for many people, it remained important to make supported decision-making available for those who did and could use the practice in their lives. There was broad agreement that offering the choice of supported decision-making in law hurt nearly no one and provided important empowerment for those who could take advantage of the regime. Further about half the informants suggested that having supported decision-making on the decision-making continuum, helped to re-enforce the notion of “most effective, least intrusive”. In short, there was a thought, although none which was verifiable, that there might be a positive spill-over effect of restraint into the more substituted types of decision-making realms. Overall, however, there was agreement that having supported decision-making systems available was a good thing, even if supported decision-making was not well understood and not well adopted as of yet.
3. Summary of Experiential Supported Decision-making Research (British Columbia)
For this project we interviewed a mix of supported decision-makers (one), representatives (supportive decision-makers, seven) and caregivers of adults with supported decision-making agreements (two). The goal had been to interview a greater number of supported decision-makers. Various challenges to recruitment emerged, which are discussed in the methodology section of this paper (III.A). However, in spite of these limitations in the research some useful findings can be documented. Below are some themes that emerged from the discussions.
a. The process of creating an agreement was difficult, expensive and confusing. This was one of the most common themes to emerge from interviews. Most participants had developed an agreement with the assistance of a lawyer. Informants emphasized a need for additional community agencies and resources available to assist people to understand supported decision-making and create representation agreements.
b. Supported decision-making is not generally a two-person relationship but rather a network of three or more people, not all of who are named in the agreement. Most informants were part of a relationship involving more than one representative named in the agreement, with the most common number being three supportive decision-makers. Some informants indicated their support network was larger but only three were named in the agreement. That said, none of the agreements discussed in our interviews included a monitor.
c. Participants found giving authority to a supportive decision-maker to be scary but empowering. The process was a part of a larger journey of taking control over their own lives and planning for the future.
d. Many informants expressed frustration about dealing with social services, hospitals and health care staff because representation agreements are not universally understood or consistently recognized. Participants said that the Ministry of Social Development often requires separate documentation of the relationship and the authority, utilizing their own forms. A number of supportive decision-makers said that their ability to support their supported decision-maker was undermined because health care staff were unwilling or unable to take the time to provide them with enough information on health conditions and treatment options. Recognition of representation agreements varied widely from person to person and sector to sector. In some instances service providers did not ask to see the document and accepted the representative’s statement that he or she was a representative for the adult. In many instances the informant had to “educate” someone as to what a representation agreement or a supportive decision-maker was, almost always resulting in a great deal of delay.
e. Being a supportive decision-maker can be a challenging, pressure-filled responsibility. Supportive decision-makers feel they require a lot of guidance and information in order to assist them act in a manner that honours the wishes of the supported decision-maker. In particular, informants wanted to know more about what mechanisms existed to prevent abuse of, and pressure on, the supported decision-maker.
f. Supported decision-making and substitute decision-making are not distinct practices in BC. It appears that a number of people with disabilities are planning for their supportive decision-maker to become their substitute decision-maker in the event that they lose capacity to participate in decisions about their own lives. In this sense supported decision-making operates as a kind of training ground for substitute decision-makers. It also appears that a number of adults are acting as both supportive decision-makers (through a representation agreement) and substitute decision-makers for property or finance (through a power of attorney) for the same adult concurrently. In other cases, based on discussions with informants, there seems to be a bit of slippage between the practices of supported and substitute decision-making, with representatives being engaged in both substitute and supported decision-making utilizing the same representation agreement, yet strongly characterizing their relationship as supportive in nature.