A. Introduction and Background
Chapter IV touched on the issue of alternatives to substitute decision-making as part of its discussion of challenges to current approaches to the concept of legal capacity. Because concepts of legal capacity are so closely tied to particular approaches to decision-making, while this Chapter deals directly with the issue of alternatives to substitute decision-making, as well as substitute decision-making itself, it will refer back to some of the discussions and conclusions in Chapter IV.
Ontario, like other common law jurisdictions, employs an approach to legal capacity and decision-making based on substitute decision-making. Under the Substitute Decisions Act, 1992 (SDA) and Health Care Consent Act, 1996 (HCCA), where a person does not meet the threshold for legal capacity and a decision is required, another person – a substitute decision-maker (SDM) – will be in some way appointed to make that decision. In recent years, as the social model of disability has been more widely accepted and human rights approaches have continued to grow in influence both internationally and domestically, voices have urged a re-examination of the substitute decision-making model and the development of alternatives. The term “supported decision-making” is often used to refer to these alternatives. There has also been some exploration of the concept of “co-decision-making”. The creation of the Convention on the Rights of Persons with Disabilities (CRPD), which addresses the issue in Article 12 and was discussed in Chapter IV, has added urgency to the discussion.
This is one of the most controversial issues in this area of the law, as well as one of the most difficult, raising profound conceptual and ethical questions, as well as considerable practical challenges. It is not possible in this limited space to thoroughly analyze all of the issues associated with models of decision-making. The literature is voluminous, and different legal systems have adopted a range of approaches. The Discussion Paper provides an overview in Part Three, Ch. I. This Chapter is focussed on the question of reforms to Ontario laws. It adopts as its basis the analytical framework suggested by the LCO Framework principles, and takes into account Ontario’s legal history and current context, the diversity of needs and circumstances, and the aspirations and concerns voiced through the LCO consultations. It sets out the key issues, including the debate regarding substitute and supported decision-making, identifies approaches that should form the basis of law reform related to these issues, and finally makes a number of draft recommendations for changes to the law.
It is helpful to keep in mind, when considering laws related to legal capacity and decision-making, two aspects of these laws: the realities of making decisions with or on behalf of someone else; and the determination of who is legally liable for any decisions that are reached.
Decision-making practices include all those values and daily practices with which those who surround a person with impaired decision-making abilities approach the practical realities of reaching particular decisions. This might include, for example, processes such as consulting with the person affected or others who have a close relationship with the person. It might also include the criteria or considerations which are brought to bear in the process, such as what the affected individual’s goals are or have been, what might produce the best quality of life for the affected individual, and so on. Decision-making practices take place, by and large, in the private sphere and are inherently relatively informal. By their nature, they are difficult to monitor and to regulate, tied up as they frequently are in family and social histories and dynamics. Whether these informal interactions are on the whole positive and supportive of the achievement of autonomy, inclusion, dignity and security for the individual, or whether they are negative or outright abusive, in most cases only becomes visible when the family unit interacts with the public realm. In some cases, such interactions are quite rare.
Legal accountability frameworks come into play in those circumstances where decisions reached through the decision-making practices referenced above must be put into effect in the public sphere, for example by entering into a contract or reaching an agreement regarding services. As part of its broader role in regulating such matters as the validity of contracts, professional standards and institutional responsibilities, the law also addresses how contracts may be entered into and consent provided where an individual lacks legal capacity, including who may be responsible for entering into agreements or providing consent to third parties, and who will be held accountable and liable for these decisions. In the more private realm of decision-making practices, considerations of autonomy, security and dignity are pre-eminent, although even decisions in this realm might affect others (such as other family members) and this may also have to be considered. In the more public realm of decision-making where decisions may have significant practical and legal consequences, not only for the individual but for third parties, considerations of clarity, certainty, and appropriate apportionment of accountability and liability must also be given significant weight.
B. Current Law in Ontario
It is worthwhile to remember that in most situations where individuals have impaired decision-making abilities that may amount to legal incapacity should an assessment be conducted, the law is not invoked. In some cases, individuals are not in situations that require significant decisions involving interactions with large institutions or professionals whose accountability and regulatory environments require legal clarity and certainty. In other cases, institutions informally accommodate families. By their nature, informal arrangements are flexible and adaptable to the particular needs of an individual. In most cases, these types of informal arrangements work well, although they are accompanied by a certain degree of risk.
Where the law is invoked, Ontario has a modern and carefully thought-out substitute decision-making system. The term “substitute decision-making” is used to describe a range of legal systems and approaches: to treat these various systems as interchangeable and subject to a uniform critique tends to lead to misunderstandings. It is helpful to keep in mind that substitute decision-making systems have evolved over time, in response to changing understandings and circumstances. However, there are some core elements, which are briefly listed below.
1. Intervention is only permitted where an individual has been found to lack legal capacity. Persons who have legal capacity have the right to make decisions independently, regardless of the wisdom of those decisions.
2. Where an individual is found to lack legal capacity and a decision is required, a substitute decision-maker will be appointed to make the decision(s) on behalf of the individual. The substitute decision-maker (SDM) is thereafter held responsible for his or her actions in this role, and may be liable for damages for breach of duties, although it should be noted that the exact nature of the duties and the forms and level of accountability vary widely. The SDM is to act on the individual’s behalf and for that person’s benefit, although the specifics of how this is to be done again vary widely.
3. Substitute decision-makers may be appointed by the individual or externally. SDMs may be appointed in a variety of ways. They may be appointed by the individual him or herself, through a planning document, such as a power of attorney. They may be appointed externally (as with a guardianship). They may also be appointed through a priorized list (as with Ontario’s system for treatment decisions). Ontario includes appointments through all three of these mechanisms.
4. There is a preference for close relationships in the appointment of substitute decision-makers. While most systems make some provision for appointment of institutions or professionals where no family or friends are available to take on this role, there is a preference for close relationships as the foundation of the role.
Ontario’s approach to substitute decision-making includes the following key elements, among others:
Cognitive capacity threshold: As is outlined in Chapter IV, the threshold for legal capacity is based on the individual’s ability to “understand and appreciate” the information relevant to a particular decision. While legal capacity may evolve or fluctuate, and while it is specific to particular decisions or types of decisions (that is, it is not “plenary”), it is an all-or-nothing quality. A person either has legal capacity to make a particular decision or does not. Where an individual does not have legal capacity to make a particular decision or type of decision, a surrogate (the “substitute decision-maker” or SDM) will make the decision on behalf of that person, taking with it related responsibilities.
Opportunities for individuals to choose or have input in the selection of a substitute: Ontario’s legislation aims to make it relatively simple and inexpensive for individuals who are legally capable to select their own SDM for property, personal care or treatment decisions through the creation of powers of attorney (POA). Ontario places relatively few restrictions on the content of POAs or requirements for their valid creation. As well, when guardians are identified, either through the statutory guardianship process’s replacement provisions or through court-appointments, the Public Guardian and Trustee (PGT) and the court respectively are required to consider the wishes of the person who is being placed under guardianship.
Focus on trusting relationships as the foundation of substitute decision-making: Ontario’s statutory scheme includes a number of mechanisms intended to give priority in identifying SDMs to existing relationships presumed to be based on trust and intimacy. For example, the hierarchical list of SDMs in the HCCA gives priority, where an SDM does not already exist, to family members. Similarly, the replacement provisions for guardianships under the SDA focus on family members.
Duties of SDMs to promote participation and consider wishes and preferences: For the most part, Ontario takes what some have termed a “substituted judgment” approach to substitute decision-making. In this approach, the SDM attempts to place her or himself in the individual’s shoes, applying the individual’s values and preferences to the degree that they are known and understood, and to make the decision that the individual would make if able to understand and apply all of the relevant information. Under the SDA, both attorneys under a POA and guardians are directed to promote the participation in decision-making of the person, as well as to consult with others who have supportive relationships with the individual. For personal care decisions under the SDA and for all decisions under the HCCA, SDMs must consider the “prior capable wishes” of the individual, the values and beliefs held while the person was capable, and current wishes where they can be ascertained.
Domain and decision-specific approaches: SDMs are appointed for particular decisions or types of decisions. A person may have legal capacity to make some decisions and not others. Under the SDA, SDMs may be appointed for either property or personal care. Further, personal care guardians may be appointed for only some specific elements of personal care, which includes health care, nutrition, shelter, clothing, hygiene or safety. Grantors of POAs may of course tailor the scope of authority of the attorney they appoint. Under the HCCA, capacity is assessed in relation to the ability to make a particular decision only, and the scope of authority of the person appointed is restricted to that particular area.
Procedural protections for persons who may lack legal capacity: While protections may not be complete or ideal, Ontario’s statutory scheme pays considerable attention to procedural protections for persons who may lack capacity, including mechanisms for providing information to the individual and for challenging decisions about legal capacity.
C. Areas of Concern
It was evident throughout the LCO’s research and consultations that there are many shortfalls in Ontario’s legal capacity and decision-making laws arising from implementation issues. Provisions intended to protect the ability of individuals to make choices for themselves to the degree possible may not be fully or appropriately put into practice for a variety of reasons, including lack of awareness or misunderstanding of the legislation, gaps in supports and processes for ensuring access to the law, and shortfalls in remedies and enforcement. These broader implementation issues are addressed throughout this Interim Report. This section focuses on issues specific to the role of SDMs.
1. The Relationship between the Law and Decision-making Practices
It was notable during the LCO’s public consultations with family members and individuals directly affected that while some had clearly undertaken considerable research related to their legal roles, the vast majority of participants who were either receiving or providing assistance in the form of substitute decision-making had only a very minimal knowledge of Ontario’s thorough legislative requirements regarding decision-making practices. Participants were not always clear even as to the difference between a will and a power of attorney document, and the focus group facilitator was generally required to provide an explanation of the difference between a guardianship and a power of attorney, as well as the basics of the legislative framework. Very few SDMs were aware of the duty to keep records or accounts or any of the other specific requirements of the role. Practically speaking, decision-making practices were rooted in family roles and history, the nature of the relationship, and a personal sense of the ethical obligations involved. That is, the law does not immediately present itself to families as the primary means of understanding what it is they are undertaking: the law was mainly understood as a potential tool for carrying out family roles and duties. In practice, most families have very little interaction with any formal legal structure outside of a few major decisions (such as a decision to open a Registered Disability Savings Plan or to sell a house), or in the case of a crisis.
Many service providers and professionals noted this disjunction during the consultations: family members often have a very weak understanding of their obligations as SDMs under the law, and as a result, the law is very imperfectly realized in practice.
It is difficult for the law to effectively reach into the essentially private realm of decision-making practices. Often, inappropriate decision-making practices come to light only when they result in abuse that comes to the attention of third parties or service providers. This issue can never be wholly addressed without a degree of oversight and monitoring that would be burdensome for the vast majority of families and friends who are carrying out good decision-making practices to the best of their ability. However, there are some practical ways in which the problem of mistreatment or abusive decision-making practices can be reduced: these are addressed in Chapter VII.
Many of the families with whom the LCO interacted indicated that as SDMs they employed decision-making practices that would be considered consistent with “supported decision-making” (as is described later in this Chapter), in that they were attempting to support their loved one’s ability to make decisions about their own lives, and to find ways to put into effect that individual’s values and preferences and to achieve his or her life goals. This is not to suggest that the LCO’s consultations provide a representative sample of SDMs or that families never employ paternalistic and restrictive approaches to their role as SDMs – based on the comments of service providers and professionals, the latter is not at all uncommon. However, it does highlight that it is not uncommon for families to see the promotion of their loved one’s autonomy as an important part of their role, regardless of the legislative framework in place.
During the LCO’s consultations, the LCO repeatedly heard that families struggle with the challenges of implementing good decision-making practices. There is very little information or support available to family members or other SDMs to assist them with the practical, emotional and ethical aspects of this important role. Setting aside for the moment issues of outright abuse of substitute decision-making, misunderstandings of the requirements of the law, inadequacies in the practical skills necessary to carry out the roles of SDMs, and a lack of supports for non-professional SDMs play a significant role in shortfalls in decision-making practices in Ontario.
It is the LCO’s view that if one of the ultimate goals of this area of the law is to support the autonomy, dignity and participation of individuals who lack or may lack legal capacity, one of the most effective means of doing so is to promote better decision-making practices on the ground.
2. The Concepts of Supported Decision-making and Co-Decision-making
Beyond strengthening decision-making practices for SDMs, there are also more thorough-going proposals for reform of Ontario’s approach to decision-making for persons with impaired decision-making abilities. Most prominently, it has been proposed that Ontario’s legal capacity and decision-making laws would be better able to respect diversity and autonomy if the current approach were to be either replaced or enhanced by formal recognition of what is termed a “supported decision-making” approach. The critiques of Ontario’s current approach and the concept of “supported decision-making” were discussed at some length in the Discussion Paper at Part Three, Ch I, along with “co-decision-making”.
There is a multiplicity of meanings given to the term “supported decision-making”, even among its proponents. It is the LCO’s observation that there is a very wide and often conflicting range of thought as to what does and does not constitute “supported decision-making”. A practice described as supported decision-making by one person may be firmly placed outside the bounds of the concept by another. In part, this is because there has to this point been relatively little practical legal application of “supported decision-making”: to some degree, it is a concept for which practical forms of implementation remain under development.
The concept of supported decision-making has its basis in the social model of disability, and has as its aim enabling and empowering individuals with disabilities that may affect their ability to receive, assess and retain information to exercise control over decisions that affect them. The goal of supported decision-making is to avoid loss of legal capacity through the provision of supports by persons with whom they have relationships of trust and intimacy. It is centred on the insight that for almost all of us, decision-making is a consultative endeavour such that we rely on supports from trusted others in making decisions of various kinds, and seeks to extend this approach to legal decision-making arrangements. The LCO’s Discussion Paper identified four widely (though certainly not universally) agreed-upon elements of “supported decision-making” approaches:
1. Supported decision-making does not require a finding of lack of capacity. The focus of supported decision-making is not on the presence or lack of particular mental attributes, but on the supports and accommodations that can be provided to assist individuals in exercising control over decisions that affect them.
2. In supported decision-making arrangements, legal responsibility for the decision remains with the supported individual. The supported individuals retain control over their decisions, and those decisions are theirs, and not their supporters’.
3. Supported decision-making arrangements are based on consent by the individual who may require assistance in making decisions and those who will assist him or her. These arrangements must be entered into freely in order to function.
4. Supported decision-making is based on relationships of trust and intimacy. For supported decision-making to function as envisioned, any supporter must have significant personal knowledge of the individual, and must have the trust of the individual, to assist her or him in understanding and putting into effect her or his values and preferences.
“Supported decision-making” may be understood as a way of articulating or promoting two goals for laws and practices related to decision-making and persons with impairments related to memory, communication or cognition. The first is the avoidance of legal structures that stigmatize or separate from the mainstream individuals who have difficulty in making decisions independently. The concept of “legal capacity” as a threshold for decision-making status, together with the use of “substitute decision-making” for individuals who do not meet the threshold, is seen by some as detrimental to the equality rights of the individuals affected, as it confines them to a legal status that removes rights that are enjoyed by others. The second goal is the implementation of decision-making practices that build on the abilities of individuals with impairments that affect decision-making; recognize these as individuals with values, goals and preferences that are to be respected; and promote their inclusion and participation in the broader society. Ideally, these two goals connect and support each other, so that legal structures promote and protect positive decision-making practices. In theory at least, the greater control afforded to individuals by retention of their legal status should promote positive decision-making practices.
Debates regarding “supported decision-making” tend to revolve around the provisions of Article 12 of the Convention on the Rights of Persons with Disabilities (CRPD). The provisions of Article 12, the General Comment on Article 12 and Canada’s Declaration and Reservation related to Article 12 were canvassed at length in Chapter IV. For the purposes of this Chapter, Article 12 requires in part that States Parties:
· take appropriate measures to provide access for persons with disabilities to the supports they may require in exercising their legal capacity;
· ensure that all measures related to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse. These safeguards must ensure that measures related 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; and
· take all appropriate and effective measures, subject to the provisions of the Article, to ensure the equal rights of persons with disabilities in a range of areas, including owning or inheriting property; controlling their own financial affairs; having equal access to bank loans, mortgages and other forms of financial credit; and ensuring that persons with disabilities are not arbitrarily deprived of their property.
As discussed in Chapter IV, it has been argued, most notably in the General Comment on Article 12, that Article 12 as a whole, including its provisions related to the concept and exercise of legal capacity, requires the abolition of substitute decision-making, to be replaced entirely by “supported decision-making”. Canada’s Declaration and Reservation indicates a quite different understanding of the responsibilities associated with compliance with Article 12. It declares Canada’s understanding that Article 12 permits substitute decision-making arrangements as well as those based on the provision of supports “in appropriate circumstances and in accordance with the law”, and reserves the right for Canada “to continue their use in appropriate circumstances and subject to appropriate and effective safeguards”.
Chapter IV considered the approach proposed in the General Comment, in which all individuals retain at all times legal capacity to make decisions. As noted above, one of the consequences of such an approach is that substitute decision-making is never permissible: rather, individuals with impaired decision-making abilities must be able to freely seek and receive supports to make decisions for themselves. The LCO has not adopted this approach to legal capacity. Rather, the LCO has recommended the retention of Ontario’s current functional and cognitive approach, together with an emphasis on an accommodation approach to legal capacity, such that if an individual can meet the test for legal capacity with appropriate accommodations, that person should be considered to have legal capacity. This has implications for the LCO’s approach to the concept of supported decision-making, in that it treats supported decision-making as a less restrictive alternative to substitute decision-making, rather than a complete replacement for substitute decision-making.
The concept of co-decision-making was also canvassed in the Discussion Paper. Co-decision-making, sometimes referred to as joint or shared decision-making, is another alternative to substitute decision-making. In co-decision-making, joint decision-making between the adult and the appointed co-decision-maker is mandated. Co-decision-making is therefore a more restrictive arrangement than supported decision-making, because the individual must make decisions about identified matters jointly, and a decision made by the person alone is not legally valid. Co-decision-making is therefore a significant departure from both the substitute and supported decision-making models, both of which see the capacity to make a decision as ultimately resting with a single individual – either the substitute decision-maker where the individual lacks capacity (under a substitute model) or with the individual her or himself (in the supported model) – even though the decision-making process may include consultation or assistance.
Co-decision-making has had much more limited implementation than supported decision-making. Both Alberta and Saskatchewan make provision for co-decision-making through judicial appointment.
Co-decision-making received very little attention during the LCO’s consultations. It is considerably more complicated both to understand and to put into practice than supported decision-making, and so has less appeal to third-parties, and at the same time places greater restrictions on autonomy so that it is less attractive to proponents of supported decision-making. However, it is also seen as less amenable to abuse than supported decision-making, and so raises fewer concerns, in some ways, than supported decision-making.
Given the challenges of implementation and the low levels of interest, the LCO has not further explored the inclusion of formal co-decision-making mechanisms in Ontario law. However, the LCO recognizes that there are potential benefits to shared approaches to decision-making, and concepts underlying co-decision-making have influenced the LCO’s thinking about network decision-making and some aspects of the draft recommendations regarding supported decision-making.
3. Comments on Supported Decision-making during the Public Consultation
As was extensively canvassed in the Discussion Paper, the means by and extent to which supported decision-making should be put into practice remain the topic of considerable debate.
The LCO raised issues related to approaches to decision-making in all of its focus groups, and specifically raised the topic of supported decision-making in a significant majority of them. As well, considerable time was devoted to the topic at the LCO’s Consultation Forum held on October 30, 2014. Of the 16 written submissions received by the LCO, three identified this as an area of significant focus and concern.
The vast majority of those participating in the LCO’s consultations were not aware of the concept of supported decision-making. Most family members and individuals directly affected had only a shadowy knowledge of the current law, and very little knowledge of the broader critiques or law reform efforts surrounding it. Their focus was for the most part on what in their experience had been helpful or unhelpful, and what the law should, in general, assist them to do. Most professionals and service providers had not encountered the concept before, or had only encountered it in the LCO’s documents and so were not prepared to discuss the topic in any detailed fashion. However, those who were previously acquainted with the concept were generally passionate on the topic, whether in favour or not. Because the concept of supported decision-making has deep roots in the community living movement and in the experiences of individuals with intellectual disabilities and their families, persons connected with the intellectual disability community were by far the most likely to be conversant with the concept of supported decision-making.
Those who had some familiarity with the concept used the term in a variety of ways. Some professionals, individuals and advocates have given deep thought to the concept and have a clear, consistent and philosophically grounded approach to the term. Others may use the term as a general way of talking about decision-making practices or legal frameworks that are more flexible or informal, or avoid a finding of incapacity. Some may use the term as a catch-all for any alternative to guardianship. The LCO has heard the term used as including powers of attorney, for example. This imprecision makes it difficult to take a clear message from some of the focus group discussions related to supported decision-making.
Both the arguments raised in favour of supported decision-making and those expressing opposition to the implementation of such a system were set out in the Discussion Paper. The core arguments in favour of supported decision-making have their roots in concern for advancing the autonomy and equality of persons with disabilities that affect their decision-making abilities. The key concerns raised centred on the potential for abuse of such a system by family members and third parties, the question of its suitability for all groups affected by this area of the law, and on what was perceived to be the lack of clarity surrounding responsibility and liability inherent in such a system. These concerns are addressed at some length later in this Chapter. It should be noted that consultees were not responding to the approach set out in the General Comment or specific proposals put forward to the LCO, but to the general concept, most particularly as it has been implemented in other Canadian jurisdictions.
In its submission, ARCH Disability Law Centre advocates a move towards supported decision-making, to bring Ontario’s system into closer compliance with the General Comment’s interpretation of Article 12. The submission proposes research on best practices for supported decision-making, strengthened rights advice provisions for persons found to lack legal capacity, requiring periodic capacity assessments for those found incapable and increasing time-limited decision-making arrangements, educating decision-makers and requiring them to make regular reports, establishing a monitoring and capacity office, and strengthening mechanisms for dispute resolution.
The Coalition on Alternatives to Guardianship proposes a comprehensive reform of Ontario’s decision-making laws, towards a system which is centred on a form of supported decision-making and allows for continuation of substitute decision-making only in the form of powers of attorney. This is an extremely complex proposal, which can only be briefly summarized here. The Coalition advocates that the purpose of a new legislative scheme be the promotion of a right to legal capacity, to provide safeguards where it cannot be exercised independently, and to ensure access to supported decision-making. The proposal provides for three ways to exercise legal capacity: legally independently (which may require the provision of supports and accommodations), through a power of attorney as provided for in the SDA, and through statutory supported decision-making arrangements. Supported decision-making arrangements could be created by personal appointment or, where this is not possible, by external appointment, something which not all proponents of support decision-making envision. At all points where incapacity for legal independence may be triggered, an “Alternative Course of Action” assessment would be required. A comprehensive system of institutional safeguards would be established, including an Office of the Provincial Advocate for the Right to Legal Capacity to provide both systemic and individual advocacy, a legislated role for monitors for supported decision-making arrangements, an expanded tribunal to adjudicate on these matters, a broad complaint and investigation function, and a registry for supported decision-making arrangements.
The Advocacy Centre for the Elderly, in its submission, expressed grave concerns about the potential of supported decision-making arrangements for abuse. In this, it was supported by the submission of the Mental Health Legal Committee.
Many clinical and social service professionals were interested by the concept of supported decision-making, hoping that some implementation of the concept could add to their ability to provide nuanced responses to some complex situations, particularly for younger persons whose skills are developing, or persons whose decision-making abilities fall within the “grey area” on the borders of legal capacity. However, as is discussed further later in this Chapter, they tended to feel that the concept was more easily applicable to some populations than others.
The LCO heard from a number of family members of persons with intellectual or developmental disabilities who were proponents of supported decision-making. As is to be expected, for the most part, these family members were chiefly interested in the development of options that they believe would be better suited to their loved one’s situation than the current guardianship system. They were generally reluctant to pronounce definitively on what other situations or families might require. That is, their concern was not so much to see a fundamental re-structuring of the law (as for example, along the lines of the General Comment, or other comprehensive program of reform) but to ensure that there was room within the system to meet their own needs.
Family members, for the most part, were looking for an approach to decision-making assistance that would be relatively informal (so as to maintain accessibility), flexible and non-stigmatizing. Parents of adult children with intellectual or developmental disabilities noted that they had put considerable effort into focussing on their children’s abilities and potential: a declaration of incapacity was felt to run counter to the entire philosophy with which they had raised and supported their now adult children. Further, the complicated and costly process for guardianship was seen to be beyond the emotional, practical and financial resources of many families. However, there was also considerable discussion about risks of informal systems. Family members emphasized the vulnerability of their loved ones to abuse, and many openly worried about what would happen if their loved one survived them: the kind of informality that would make it easiest for them to support their loved one might not be appropriate in other circumstances. Issues of abuse are dealt with later in this Interim Report; however, these issues are also relevant to the consideration of approaches to decision-making.
The greatest concerns regarding current approaches to decision-making were voiced regarding guardianship (whether instigated under the SDA or MHA), as opposed to decision-making through powers of attorney (POA) or by proxies under the HCCA. POAs allow individuals to select the person(s) providing decision-making assistance and are amenable to customization to individual circumstances. They do not necessarily entail a formal declaration of incapacity (although they may) and as personal documents are seen as less marginalizing than the formal legal status of guardianship. HCCA decision-making arrangements are similarly seen as flexible and relatively non-stigmatizing. Because guardianship involves a formal declaration of incapacity, and is often time-consuming and costly to enter or exit, it is seen as having very “weighty” status. Family members emphasized to the LCO that, by and large, they did not see this as a practical or appropriate option the law provides for their loved ones. While the number of Ontarians under guardianship is relatively small, guardianship it is often the only formal option for those persons with intellectual or developmental disabilities who cannot independently make major decisions: unlike persons who develop disabilities affecting decision-making abilities later in life or whose disability is episodic, they may never at any point in their lives be able to meet the test for legal capacity required for them to appoint a POA for property (if they have any) or for personal care.
As is to be expected, consultation participants who were directly affected by the law had a range of views about how decisions regarding their lives should be made, the appropriate role for loved ones, and the type of assistance that was helpful and appropriate. While some felt that unwanted “help” was foisted on them, others indicated that they knew that they were unable to make certain types of decisions or were at some times unable to make decisions, and that they were comfortable relying on their loved ones to make those decisions for them.
It was noted that supported decision-making is a more realistic option for some than for others, whether because of the nature and extent of a particular individual’s needs with respect to decision-making, or because of their social contexts. Not everyone has family members or friends in their lives who could potentially play this role: some are socially isolated, others live at a geographical distance from those who most love and understand them, and for some, their significant others are frail, vulnerable or themselves in need of supports. The latter scenario is not uncommon for older persons, whose social networks are aging along with them. Even where relationships exist that could form the basis of supported decision-making, there can be no guarantee of permanence. This is also true for substitute decision-making: the added difficulty lies in the deep reliance of supported decision-making approaches on these relationships of trust and intimacy. Where these relationships disappear, so will the foundations for supported decision-making for a particular individual.
Issues related to decision-making practices and legal accountability frameworks are often discussed as a binary debate regarding the relative merits of “substitute” and “supported” decision-making. In the LCO’s view, this approach can oversimplify the issues at stake, as it tends to elide the nuances of decision-making processes and the broader social context, as well as the diversity of needs and available supports. In considering proposals for reform, the LCO has focussed less on whether or not a particular practice constitutes “supported” or “substitute” decision-making, or on whether one of these approaches as a whole is categorically superior to the other, and more on how in Ontario’s context, current laws and practices relating to decision-making practices and legal accountability can be reformed to better support the achievement of the Framework principles for the wide range of individuals who fall within the scope of Ontario’s legal capacity, decision-making and guardianship laws. In the view of the LCO, a binary approach towards approaches to decision-making is not likely to serve well the diversity of needs within Ontario’s population.
4. Concerns Related to Abuse of Supported Decision-making Arrangements
Significant concerns were raised regarding the potential for abuse of supported decision-making arrangements. Because supported decision-making systems in their purest form generally place no limit on the right of the individual to make decisions that are unwise, risky or result in negative consequences, it is more difficult to hold supporters to objective standards and therefore may be more difficult to hold supporters to account for misusing their role.
I don’t want to be the fly in the ointment, but I also see the other side a whole lot, where we make assumptions that families should be supportive more… We don’t have difficulty, at least in our shop, if someone says, I want Sally to sit beside me. You know, we honour that … but what we do see is an awful lot of families driving the train, and really, the patient… so, while it’s an attractive idea, I really think the devil’s in the details…. So, to me it isn’t that the legislation needed to change so much, it’s more that people need to understand better what their role is as decision-makers for others.
Focus Group, Joint Centre for Bio-ethics, October 1, 2014
Supporters can be held responsible for their own behaviour in the decision-making process, both in relation to the individual and to third parties: in both Alberta and the Yukon, laws related to supported decision-making arrangements explicitly address issues of misrepresentation, undue influence or fraud on the part of supporters that might affect the individual by, for example, diminishing the person’s assets. In both jurisdictions, decisions may not be recognized as belonging to the individual where these were at play. However, it may be difficult to obtain evidence of misrepresentation or undue influence on the part of a supporter. As noted above, decision-making practices are for the most part essentially private and informal, and not the subject of documentation. Where close personal relationships are involved, there are likely to be tangled webs of power and interdependence: it may be quite difficult, both practically and psychologically, to disentangle the interests and motives of “supporters” from those of the individual they are intended to support. Some persons who are unable to make decisions independently may have considerable difficulty identifying the motives of those who are supporting them, communicating what the decision-making process was like from their perspective, or reliably remembering what that process was. In such circumstances, it may be very difficult to demonstrate that misrepresentation or undue influence were at work, except in the most egregious of cases. As the Advocacy Centre for the Elderly (ACE) has commented,
The difficulty with this [supported decision-making] arrangement is that it creates a risk of undue influence by a legally designated support person. While this risk also exists in more traditional arrangements involving attorneys and guardians for property, we are concerned that actual abuse by a support person will be more difficult to detect as the true identity of the decision-maker, and the factors influencing each decision, may become opaque.
The extent of the risk of abuse depends in part on the approach one takes to supported decision-making. If one sees supported decision-making as an approach appropriate only for individuals who are able to make use of assistance to themselves assess issues and make choices, the risk may not be substantially more than is already undertaken by persons who create powers of attorney. However, in an approach where all individuals are “supported” and legal capacity is retained even by those individuals with the most severe disabilities, the risks are significantly greater. This is particularly so where only one or two people can claim to be able to interpret the wishes of the individual, and where the individual effectively has no ability to independently signal her or his unhappiness or to seek help.
5. Concerns Regarding Clarity and Accountability
Service providers and third parties raised concerns about the inherent lack of clarity in supported decision-making arrangements. In discussions with financial service providers, interviewees often expressed both empathy for the challenges faced by families of persons with disabilities that impair their decision-making abilities and concern that proposed supported decision-making arrangements would place an unreasonable burden on their institutions. As some representatives of financial institutions told the LCO, it is essential that third parties are able to receive instructions from one person who has binding authority: there cannot be duelling authorities.
As an illustration of the difficulties, during interviews carried out for this project, some financial institutions operating Registered Disability Savings Plan (RDSP) accounts told the LCO of family members who wished an RDSP account to be opened in their loved one’s name, but who also wished the financial institution to hide the existence of the account from the account holder, or to refuse to release assets if or when the account holder requested. That is, the financial institution was being asked both to provide individuals with impaired decision-making abilities with legal status as the holder of the account, and to deny these individuals the basic responsibilities of account holders because family members believed that the individuals were unable to exercise those responsibilities even with their support. These kinds of situations put financial service providers into extremely difficult positions.
The Coalition on Alternatives to Guardianship has recommended, in response to such concerns, that legislation provide for protection of third parties who enter into agreements with individuals in formal supported decision-making arrangements, to the extent that the third parties abide by the principles of supported decision-making, and respect and accommodate the duties of decision-making supporters. Third parties would be entitled to request and receive a notarial or original copy of a decision-making agreement on which the individual was relying, and would themselves be entitled to rely on the exercise of that arrangement as evidence of a valid decision.
As the LCO understands this proposal, the third party would not be required to “look behind” the supported decision-making agreement. So long as there were no clear signs of abuse, the third party would be entitled to rely on the agreement and hold the individual responsible. It would be for the individual to seek redress from the supporter should there be duress or undue influence. The LCO is concerned that such an approach may leave many victims of financial abuse with little practical remedy. Further, while it might protect the third party from liability, the third party might still be unable to enforce the contract, as it might be found to be unconscionable. That is, to truly address the concerns about supported decision-making raised by third parties could require a thorough reconsideration of some of the basic principles of the law of contract.
6. Responding to Diverse Needs
The decision-making abilities of individuals may be impaired for a variety of reasons and in a variety of ways and degrees. Some individuals whose decision-making abilities are affected by temporary or more permanent illness or disability may be able to continue to make all of their decisions independently, but may need more time or alternative communication strategies. Some may need help in understanding their options and the implications, but with that assistance, can make decisions on their own. Others may be able to articulate their overall goals, but will not be able to understand and assess how various options might assist them in reaching their goals. For others, their goals will have to be inferred from their behaviours and their reaction to various situations and environments or from their past choices. Some have insight into their needs and will accept or seek assistance; others will not. Some have the ability to learn and to improve their decision-making abilities; others will be living with conditions that will result in continual deterioration of their abilities. Finally, every person will come to decision-making with his or her own personality, history and approach to receiving assistance, as well as with access to different levels and types of support.
During the consultations, several professionals and service providers lamented the lack of nuance in the system: in their view, the system is overly binary, and has difficulty with situations that fall into the “grey zone”: for example, where an individual falls on the borderlines of the capacity test.
I feel like often I’m constrained by [the] very arbitrary dichotomous approach to either capable or incapable, and that’s just not a developmental approach, and we have youth who maybe are sixteen, but actually their capacity to – not understand, often they’re very capable of understanding information – but the appreciation and the translation of that into sort of ramifications and impact on their lives down the line may be grossly lacking or very variable, day-to-day depending on who’s ticked them off. It bothers me, so that’s the receiving end. But I mean, I think really that’s where I find myself operating, it’s really about, even if, if a youth is made incapable, really where does that get us, very very, not very far, unless we can have a process of having that youth still very much in the conversation about the decisions and actually ultimately agreeing to the decisions, but with a little bit oomph behind how to support the parents.
Focus Group, Clinicians, September 12, 2014
As was referenced above, many clinical and social service professionals were interested by the potential of supported decision-making approaches to allow for a broader array of options in some complex situations or for some specific populations. However, these professionals also tended to feel that the concept was more easily applicable to some populations and situations than others. For example, some felt that a precondition for effective supported decision-making was that the individual have insight into their needs and limitations, so that she or he could effectively assess the need for and access appropriate supports. Others felt that some types of decisions were more amenable to a collaborative approach than others. The concept of supported decision-making was thus seen as potentially a means of adding to the options in the current system, rather than as a replacement for a substitute decision-making model.
I think what I see across the spectrum of the organisation is that one size fits all doesn’t fit. You know, we see a lot more collaboration with families in terms of decision making in some areas like [unclear] than we necessarily do in the adult populations, and then there are some decisions that are being made, you know, housing, some of the more rehabilitative decisions that are, almost by necessity have to be collaborative, we can’t physically transport someone to their housing. Yet there are times when, for example, on our very acute care units where somebody needs particular medication, the need for a very very decisive decision on behalf of someone who cannot make that decision, you know, in terms of administration and medication is very important to be able to have. You know, those types of situations of more collaborative, supported decision making model, maybe sort of fraught with difficulty in terms of being able to administer acute medical care when it’s needed.
Focus Group, Clinicians, September 12, 2014
D. Applying the LCO Frameworks
The debates surrounding models of decision-making appear to bring into stark competition the Framework principles of promoting autonomy and of safety or security. Certainly, proponents of supported decision-making often frame the debate in this way. This is not without validity. The LCO heard from some directly affected individuals who were fiercely protective of their autonomy, who felt that they were over-protected and over-regulated by their SDMs or by family members providing informal assistance, and that there should be more room for them to take risks, make choices that others would disagree with, and in general control their own lives. Supported decision-making is intended to avoid intrusions on the self-determination of persons with conditions that affect their decision-making abilities, and respect the ability of these individuals to take risks and experience their consequences. As has been emphasized throughout this Interim Report, there are shortcomings in the ability of the current laws in protecting and promoting autonomy: supported decision-making may provide one means for reducing that shortfall.
At the same time, critics of supported decision-making often point to what they see as a lack of adequate safeguards for the safety and security of individuals under supported decision-making approaches. The greater the impairment in the decision-making abilities of the individuals to whom supported decision-making may apply, the more weighty these concerns become. There are risks in any decision-making model: the very nature of the impairments that give rise to the need for this area of the law makes such risks unavoidable. The risks will naturally increase with the vulnerabilities of those directly affected by the law, whether those risks arise from the degree of the impairment, a lack of social relationships and supports, or the negative assumptions and attitudes in the broader culture.
However, as the general discussion of the principles in Chapter III emphasized, it is important not to take a simplistic view of the principles and their interrelations. Not all individuals subject to substitute decision-making see it as an unjustifiable intrusion on their autonomy. There were many participants in the consultations who were directly affected by these laws who felt that, given their own limitations, their loved ones were in a better position to make certain types of decisions and wished to entrust them with that role.
If I wouldn’t have had it [a POA] already in place, it would’ve been a disaster because I found my care at [the hospital] was horrible…. You know and to be honest with you, usually we’re not in any condition, you know at the point to understand what’s going on, let alone have someone trying to explain something.
Focus Group, Persons with Acquired Brain Injuries, November 7, 2014
And as discussed in Chapter III, there are those who see planning documents such as powers of attorney as a way to preserve their choices and identities in the face of potential changes to their abilities: the notion of appointing another person to make a decision for them was not seen as antithetical to their autonomy unless the power was abused. Married couples, for example, sometimes conceptualized this kind of assignment of responsibility as an extension of how they had assigned roles and divided labour throughout their relationships. These individuals trusted their spouses to make decisions for them and to respect their individuality in doing so. The concept of substitute decision-making was for these individuals not seen as something foreign or intrusive. Younger persons with disabilities affecting their decision-making abilities tended to express more interest in the opportunity to change and take risks, and thus placed more emphasis on respect for their current values and goals. While the LCO was not able to extensively explore cultural perspectives on decision-making models, it is important to keep in mind that gender and culture may also affect approaches to autonomy and decision-making.
[M]ost of us who have folks from another culture, you know, their value of autonomy is not the same, and how do we deal with that in terms of supportive-decision making too, for that person, that group. And I’m conscious of intracultural differences as much as I am of intercultural differences, but this is something to be mindful of, you know. This is part of this discussion.
Focus Group, Joint Centre for Bioethics, October 1, 2014
That is, in addressing the promotion of the principles of autonomy and security in decision-making models, consideration must also be given to the principle of responding to diversity. There may not be a single most appropriate approach to decision-making, able to reflect the wide range of needs and experiences among those directly affected by the law. If an aim of this area of the law is to address sometimes conflicting aspirations for both control over decisions and safeguards against exploitation, there may not be a single best way of meeting this aim.
The principles of understanding membership in the broader community and recognizing that we all live in society are particularly relevant when considering models of decision-making, pointing us to the importance of taking into account the legitimate needs for clarity, certainty and accountability of those who provide services to or enter into agreements with persons whose decision-making abilities are impaired, as was highlighted above. Regardless of the approach taken, it is necessary to identify clearly who has legal authority – and therefore accountability – for any decision made, particularly in relation to third parties, but also for everyone involved in the arrangement.
E. The LCO’s Approach to Reform
The issues in this area raise considerable challenges. The legislation applies to all, but the needs of those affected vary considerably from group to group, across time and across types of decisions. Desires for non-marginalizing approaches and for greater autonomy may sit uneasily with needs for clarity and accountability and with concerns about abuse and misuse. The effort to find new approaches that will better meet needs may result in risks to individuals who tend to be marginalized and vulnerable, and for whom errors in approaches may have serious, long-term consequences. The LCO has given careful consideration to how to best meet these competing considerations.
1. Substitute Decision-making as a Last Resort
The law reform leading to the current legislation identified as one of its core values freedom from unnecessary intervention, and the SDA and HCCA include many mechanisms intended to promote this value, including presumptions of legal capacity, decision-specific approaches to capacity, procedural protections for persons found legally incapable and the “least restrictive” provisions of the SDA with respect to court-appointed guardianships. Many organizations and individuals recognize the seriousness of a finding of legal incapacity and do take a last resort approach. However, it is clear that in practice, the legislation has not fully achieved this goal: there was widespread agreement throughout the consultations that one of the goals of law reform in this area should be to limit the use of substitute decision-making arrangements, and in particular guardianship, which is more intrusive than either POAs or appointments under the HCCA, to those circumstances where it is truly warranted. While there was disagreement as to how much further the use of substitute decision-making – and especially guardianship – could be narrowed, there was certainly agreement that there was room for improvement in ensuring that these were last resort options, and throughout this Interim Report, the LCO is making draft recommendations to this effect.
This includes recommendations to:
· promote better understanding of their roles and responsibilities among SDMs (Chapter XI);
· improve the quality of assessments of capacity and of the associated procedural protections, so that individuals are not inappropriately found legally incapable (Chapter V);
· improving transparency and accountability for personal appointments, to reduce the misuse of these appointments (Chapter VI);
· increasing the flexibility and options available when external appointments of SDMs are made, to provide greater tailoring in both time and scope of appointments and to reduce unnecessary appointments (Chapter IX ); and
· strengthening mechanisms for rights enforcement and dispute resolution, and in particular expanding the accessibility of these mechanisms, through expanded use of administrative justice (Chapter VII).
2. Promoting Positive Decision-making Practices
Proponents of supported decision-making believe that substitute decision-making is by its very nature incompatible with the preservation of the autonomy and dignity of affected individuals: that the removal of the legal status of responsibility for decisions that is associated with a determination of incapacity is fundamentally at odds with the possibility of that person’s being able to exercise any control or agency in their own lives.
This is a compelling critique. The legal status associated with substitute decision-making has both a practical and a symbolic impact. Its visible removal of legal responsibility for a set of decisions undermines not only the practical ability of an individual to independently undertake certain transactions, but the social status of the person as the key decision-maker in his or her own life. In a sense, it compromises the public “face” of the person.
This question of how the law should recognize different types of decision-making where an individual cannot act independently cannot be completely severed from the issue of decision-making practices on the ground. However, as the preceding discussion illustrated, decision-making practices on the ground are not necessarily determined by legal status. Family members in a substitute decision-making role may approach that role in a way that is harmonious with the practices promoted by supported decision-making. Such approaches are certainly not contrary to either the substance or the intent of the current legislation. Indeed, these types of daily practices would be embraced and promoted as good practice by many, if not most, professionals and service providers.
And as was raised by a number of persons during the LCO’s consultations, the vulnerability of persons with disabilities affecting their decision-making abilities to abuse or manipulation is grounded not only, and not even primarily, in the loss of legal status associated with a finding of incapacity, but also in much broader and less tractable societal barriers. It is not difficult to imagine a regime in which all individuals retained legal capacity but in which the interactions of “supporters” with the supported individuals were paternalistic and controlling. That is, while philosophically “supported decision-making” is intended to promote the ability of individuals to exert control over their lives, as with any legal regime in this area, there will always be significant challenges at the level of implementation and daily practice, which is by its nature resistant to supervision.
The LCO has therefore considered recommendations to support and strengthen positive decision-making practices, such as further encouraging the involvement of the individual in decisions affecting her or his life to the greatest extent possible, and ensuring that decisions are attentive to and reflect to the greatest degree possible the values, preferences and life goals of the individual affected.
3. Legal Accountability Should Accord with Decision-making Processes
Both in this Chapter and in Chapter IV, considerable attention has been paid to the allocation of legal responsibility when individuals are not able to make decisions independently.
It is the LCO’s view that there is a difference in the ethical obligations that individuals undertake when they assist another person to themselves understand the information associated with a decision and to weigh the risks and benefits, and a situation where individuals are using their empathy and past experience to inform the uncertain enterprise of interpreting another individual’s values and goals and then applying them to a practical issue. There is a limit to our ability, as humans, to understand and interpret even those whom we know best: even with best efforts and intentions, we are always liable to error in our attempts to stand in another’s place. This is not to say that this exercise is valueless, but to highlight the jeopardy in simply attributing a decision made in this way as purely the individual’s own, without acknowledging the significant intermediary role.
The difference in whether the individual is actually making the decision or someone else is acting as an intermediary should be reflected in legal accountability structures. Where a decision is being made through this kind of empathetic inference, the individual carrying out this exercise should be aware that they are undertaking a significantly morally freighted activity and that the obligations on them are high. Further, the individual at the centre should not be left to solely suffer the legal consequences. That is, legal accountability structures should mirror, as closely as possible, the actual decision-making process. Where the individual her or himself is ultimately making a decision, even with assistance from another, it is reasonable to retain accountability with that individual. However, where another person is the one actually weighing options and consequences, even if based on the values and preferences of the individual, the person who is carrying out this analytical process should have some clear accountability and legal consequences for the decision ultimately reached.
4. Providing Options to Meet Diverse Needs
The needs and circumstances of those affected by this area of the law are extremely diverse. People need different types and levels of supports and assistance, face different types of risks, and exist in very different contexts. Approaches to this area of the law must, to the degree possible, recognize and make room for this diversity. This is challenging, in part because providing multiple options adds to the complexity of an already seemingly convoluted system, and in part because systems generally have difficulty adapting to situations that do not produce yes or no answers.
As noted above, most of the interest in “supported decision-making” was found in the intellectual disability community. The concepts underlying this approach to capacity and decision-making can be understood as an extension of the principles underlying the community living movement. The concept seems to have less resonance among other groups disproportionately impacted by these laws, and in fact, some advocates for other affected groups have expressed strong concerns about the susceptibility of these new approaches to abuse and misuse, as well as their appropriateness to the needs of the individuals involved. To the extent that supported decision-making has been implemented in common-law jurisdictions and that evidence has been gathered about its implementation, supported decision-making approaches have been almost entirely found within the intellectual disabilities community: it is unclear how this approach would work in practice for some other groups. As is discussed elsewhere, while the aspirations for dignity, inclusion and autonomy are widely shared, the means for achievement of these aspirations may differ between groups or individuals. It is the LCO’s view that these differences should be understood and respected. What works for some may not work for all. The supports needed to achieve autonomy may differ significantly, and a single legal framework may be inappropriate for addressing these varying needs. However, we must also recognize that concerns about abuse and the entitlement of third parties to have clarity in who is accountable to them cut across the different approaches.
5. Progressive Realization
The principles underlying the CRPD – those of respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons; non-discrimination; full and effective participation and inclusion in society; respect for difference and acceptance of persons with disabilities as part of human diversity and humanity; equality of opportunity; and accessibility – must guide any approach to this area of the law, and indeed underlie the LCO’s Framework principles.
The desire that some have expressed for an approach to legal capacity and decision-making that is more flexible, nuanced and respectful of the dignity of those affected requires imaginative new approaches to the law. At this time, many jurisdictions are re-examining their legislation, and some have recently implemented or are in the process of implementing significant changes. However, as was noted in the Discussion Paper, there is currently little in the way of an evidence base on which to ground law reform. Given the vulnerability of the population affected, the LCO is concerned that reform proceed in a way that minimizes the risk of grave unintended negative effects, particularly given the concerns expressed about the potential of supported decision-making approaches to enable abuse in some circumstances. Without due care and balance in reform of this area of the law, those whose rights are intended to be promoted may instead find themselves in worse circumstances – particularly since many of those affected are already more at risk of marginalization and abuse than the general population.
For this reason, the LCO is particularly concerned by the stance taken in the General Comment that these rights are not subject to progressive realization, but are those of immediate implementation. It is essential to progress towards greater dignity and autonomy for persons affected by this area of the law, but it is also essential to do so in a way that seeks to build on evidence, realistically and practically addresses the difficulties, takes into account the diversity of needs and circumstances of those affected, and proceeds with reasonable caution so as not to inadvertently result in greater harm than benefit.
The LCO therefore believes a “progressive realization” approach to reform in this area, which adopts the approach underlying Article 12, aims to better promote and protect the Framework principles, and seeks to implement them by building on existing good practices, providing new options with carefully considered safeguards, and evaluating the evidence on which reform is based, is appropriate.
F. Draft Recommendations
1. Clarifying Legislative Requirements for Substitute Decision-making Practices
As was argued above, a primary goal of legislation in this area of the law should be the promotion of positive decision-making practices.
An approach to decision-making practices that is rooted in respect for the individual’s life goals and values, and aims to maximize the individual’s ability to exercise control is not prohibited by or contrary to the SDA or HCCA. A number of provisions in the SDA aim to promote just such an approach, including the requirements for SDMs to:
· encourage the participation of the individual in the decision-making process, to the best of his or her ability;
· foster regular contact between the individual and supportive family members and friends;
· consult from time to time with other supportive persons who are in contact with the individual; and
· seek to foster the person’s independence.
SDM Roles With Respect to Personal Care
The SDA also provides reasonably clear guidance as to the basis on which SDMs are to reach decisions. In the case of personal care decisions, the SDM must act in accordance with the individual’s prior capable wishes where known (and must be diligent in ascertaining such wishes), and where there are no prior capable wishes, to consider the values, beliefs and (if ascertainable) the current wishes of the individual, as well as the individual’s quality of life. The personal care SDM must also choose the least restrictive and intrusive course of action that is available and appropriate in the circumstances. Similarly, the HCCA includes clear direction for SDMs making decisions related to treatment or admission to long-term care to take into account the persons prior capable wishes, and where there are no such wishes, factors including the person’s wishes, and their values and beliefs.
In the LCO’s view, these requirements regarding decision-making processes are consistent both with the Framework principles, and with the vision of supportive and autonomy enhancing approaches to decision-making practices put forward by proponents of supported decision-making (although not with their approach to legal standing and accountability). The LCO does not see in the language of the HCCA or in the SDA with respect to considerations for personal care decisions any significant inconsistency with the “best interpretation of will and preference” approach put forward in the General Comment and in some submissions. While the Ontario’s statutory language in these cases might be somewhat different, the aim is harmonious, although of course it must be understood in its context, in which the ultimate decision does rest with the SDM.
For the most part, the general role and principles related to substitute decision-making with regards to personal care are clear and appear to be appropriate, although there are concerns regarding widespread misunderstandings of the role of personal care SDMs. One common and troubling misunderstanding is the belief that the personal care SDM has a broad authority to restrict access to the individual. It is, for example, not uncommon for an adult child to restrict or attempt to restrict access to the parent by a sibling, or a parent to attempt to regulate the romantic life of an adult child, in contravention of the wishes of the person for whom they are SDM, because of a personal conflict or dislike. The LCO has heard that long-term care or retirement home personnel may inappropriately facilitate such denials of access.
The LCO has heard some concerns related to a lack of clarity and procedural protections regarding the authority of SDMs to make decisions about very serious matters, such as detention in a long-term care home or retirement home. Many of these facilities include secure units, intended to protect the safety of residents whose disabilities are such that they are at risk of getting lost or otherwise coming to harm. While long-term detention may well be necessary for safety of some vulnerable individuals, such detention does raise fundamental liberty and autonomy interests, and so requires careful balancing of rights. The Advocacy Centre for the Elderly (ACE) has pointed out that the legality of these secure units is unclear.
Health providers have a legal duty of care to their patients, as do hospitals and long-term care homes not only to patients but to all persons who are lawfully on the premises. The common law provides for a limited right to restrain or confine persons for short periods of time in an emergency where immediate action is required to prevent serious bodily harm to the person or to others, and the HCCA explicitly preserves this common law duty. However, there is no clear authority under either the SDA or the HCCA for a guardian of the person, power of attorney for personal care or HCCA appointee to consent to ongoing detention in a long-term care home or retirement home, except in those rare circumstances where a “Ulysses Clause”, as enabled under section 50(2) of the SDA, has been inserted in the POAPC or court order, authorizing “the attorney and other persons under the direction of the attorney to use force that is necessary and reasonable in the circumstances to take the grantor to any place for care or treatment, to admit the grantor to that place and to detain and restrain the grantor in that place during the care or treatment”.
HCCA appointees, of course, only have authority to make decisions related to treatment, admission to long-term care or personal assistance services, depending on the specific findings of incapacity that are made and so do not have authority regarding detention. The Mental Health Act does provides at length for involuntary admission for persons with a diagnosed mental disorder who meet a number of other conditions, but this will not be the applicable or appropriate process for many residents of long-term care or retirement homes. Notably, in R. v. Webers, the court found a hospital patient who had not been provided with the procedural safeguards of the Mental Health Act to have been unlawfully detained.
The Long-Term Care Homes Act, 2007, sets out a detailed scheme for detention of residents with consent from the SDM where necessary, including provisions for written notice, rights advice and review by the Consent and Capacity Board; however, these provisions have never been brought into force. There are parallel unproclaimed provisions in the Retirement Homes Act, 2010. These are accompanied by provisions in the HCCA, also unproclaimed, outlining the jurisdiction of the CCB with respect to secure units.
Beyond the challenges associated with the lack of legal clarity surrounding the detention in long-term care or retirement homes of persons who do not have legal capacity, there are concerns about the lack of appropriate safeguards and procedural rights surrounding these types of decisions, which involve deprivation of very fundamental rights. As the Victorian Law Commission commented in dealing with these issues, “Because liberty is a value of paramount importance in our community, it is strongly arguable that actions involving total loss of liberty should be authorised by a process that involves appropriate checks and balances”. The Victorian Law Reform Commission recommended that the informal practices surrounding detention in that Australian state be replaced by a new authorization process, as being more consonant with liberty interests. In the high-profile Bournewood case in the United Kingdom, the European Court of Human Rights found that the detention in hospital of a man with autism who lacked legal capacity violated the provisions of the European Convention safeguarding the right to liberty and security of the person, in that the lack of procedural safeguards for such detentions made them “unlawful”. In response to this decision, the Mental Capacity Act, 2005, includes in Schedule A.1 a very elaborate scheme providing detailed requirements about when and how deprivation of liberty may be authorized, an assessment process that must be undertaken before deprivation of liberty may be authorized and arrangements for renewing and challenging the authorization of deprivation of liberty.
DRAFT RECOMMENDATION 15: The Government of Ontario implement a statutory process that provides for processes for consent to detention in long-term care or retirement homes for persons who lack legal capacity and for whom detention is required in order to address vital concerns for security or safety, and which addresses the needs for clarity and for procedural rights in dealing with fundamental liberty interests.
SDM Roles With Respect to Property Management
In respect of property management decisions, the SDA sets out a hierarchical list of priorities that should guide property decisions, with first priority given to expenditures that are reasonably necessary for the individual’s education, support and care, followed by those that are reasonably necessary to meet the needs of the individual’s dependents, and finally, the satisfaction of other legal obligations. The SDA allows for gifts, loans and charitable donations, albeit under limited conditions. In general, the SDM for property must exercise his or her powers “for the incapable person’s benefit”, including taking into account the individual’s personal comfort and wellbeing, and must manage the property in a manner consistent with personal care decisions. This is not as clearly harmonious with a focus on the values and preferences approach to decision-making as the provisions regarding personal care. While SDA does not refer to a “best interests” type of decision-making approach, in setting out a list of priorities, it does restrict options and essentially requires SDMs to prevent individuals from seriously mismanaging their money, for example, by dispersing it to relatives and friends or by making extravagant purchases, with a view to ensuring that the benefit of the property primarily accrues to the individual. This could certainly be viewed as a paternalistic approach: in contrast, persons who have not been determined to lack legal capacity are permitted to make foolish or risky decisions that will result in their own impoverishment.
Given the risk of financial abuse of persons with impaired decision-making abilities by trusted others, the LCO believes that it is reasonable to maintain some objective limitations on property decisions for persons who lack legal capacity. That is, to create as the sole criterion for property decisions the “best interpretation of will and preference” of the individual would make it far too easy for unscrupulous individuals to carry out financial abuse without repercussions.
However, the LCO also believes that it would be beneficial for the SDA to make clear that, within the existing priorities, SDM decisions related to property management should be made keeping in mind the life goals and values of the individual, either as expressed while capable, or as demonstrated by the individual who has been found legally incapable. Specifically, in allocating expenditures for the person’s support, education and care, the SDM should consider both the prior expressed wishes and the current values and goals of the individual. The LCO does not believe that this should extend to allocation of resources to the needs of dependents: it is dependents who will often be acting for the individual, and to do so would raise concerns regarding undue influence and conflicts of interest.
Further, the LCO has heard many concerns throughout the consultation that the property management provisions of the SDA are being misunderstood and misused as a means of structuring the incapable person’s finances in such a way as to maximize the ultimate estate and minimize taxes. Some of the most protracted disputes under the SDA might be characterized as preliminary estate litigation. Financial services providers frequently commented that SDMs appear to take literally the provisions of the SDA that an SDM for property “has power to do on the incapable person’s behalf anything in respect of property that the person could do if capable, except make a will”, without regard to the purposes of the legislation, arguing that they should therefore be entitled to outright convert the financial assets or structure them for the benefit of the estate rather than the person.
The LCO has also heard concerns that substitute decision-makers for property may use their authority in this arena to inappropriately exercise control over the personal choices of the individual – for example, refusing to pay for telephone or internet to cut off relationships of which the SDM disapproves, even if the individual does not lack capacity with respect to these kinds of decisions.
It may therefore be useful to clarify in the legislation that the paramount goal of substitute decision-making related to property is not, for example, to maximize assets, to exert inappropriate control over the personal choices of the individual, or to prepare for the transfer of the estate, but to maximize the wellbeing of the individual, when wellbeing is considered as including the person’s autonomy, social inclusion and participation, security, dignity and overall quality of life.
DRAFT RECOMMENDATION 16: The Ontario Government amend the statutory requirements for decision-making practices related to property management to:
a) clarify that the purpose of substitute decision-making for persons with respect to property is to enable the necessary decisions to provide for the well-being and quality of life of the person and to meet the financial commitments necessary enable the person to meet those ends; and
b) require that when resources are allocated to the individual’s support, education and care, that consideration be given to prior capable wishes, or where these have not been expressed, to the values and wishes currently held regarding the individuals well-being and quality of life.
When the SDA was created, the term “substitute decision-maker” was not intended to suggest that the person so appointed had untrammeled authority to impose their own values and preferences on the individual for whom he or she was acting, and the actual provisions of the legislation do not indicate that SDMs have such a role. However, the LCO has encountered sufficient misunderstanding of the term during the public consultations to suggest that the term is often conflated with a pure “best interests” approach in which the judgment of the SDM replaces the values of the person affected, and may make some contribution to inappropriate decision-making practices.
I think one of the biggest gaps that tends to be when someone is aware that they’re a substitute decision maker is that they’re not aware that they need to be making the decision that that person would have wanted, not what they [want]. And that tends to be a discrepancy that I see.
Focus Group, Community Health and Social Service Providers, September 26, 2014
Some other jurisdictions have moved to replace the terminology of “substitute decision-maker”. For example, the Irish Bill (currently at Committee stage), refers to “decision-making representatives” rather than substitute decision-makers, a terminology that finds some echo in the provisions of the HCCA that refer to the appointment by the Consent and Capacity Board of a “representative” to make decisions under that Act. Under the Mental Capacity Act of England and Wales, the Court of Protection appoints a “deputy” to make necessary decisions.
The LCO has considered a number of alternative terms that might better reflect the nature of the role that Ontario’s legal capacity, decision-making and guardianship regime assigns to substitute decision-makers.
· The term ‘agent’ has been defined as “[o]ne who acts for another whether for any form of remuneration or not” or “[o]ne who, by mutual consent, acts for the benefit of another; One authorized by a party to act on that party’s behalf”.  An agent is a person employed to act on behalf of another; the act of the agent done within the scope of his or her authority will bind the principal. An agent’s primary duty is to obey and carry out the principal’s instructions, and do the best he or she can for the principal. If an agent departs from the principal’s instructions the transaction will not be upheld. An agent who fails to carry out instructions is liable for resulting damages to the principal. Importantly, it has been noted that “[t]he outstanding feature of an agent’s employment in a legal sense is that he is employed primarily to bring about business relations between the principal and third persons, and this characteristic is perhaps the most distinctive mark of the agent as contrasted with others not agents who act in representative capacities.”
· A “deputy” is “[o]ne who acts instead of another, or who exercises an office in another person’s name”. In the Canadian context, the term “deputy” is mainly associated with public office.
· The term “representative” has a broader connotation than either deputy or agent. The Pocket Dictionary of Canadian Law defines the term as follows: “The person who takes the place of or represents another person. A deceased person’s executor or administrator is called a personal representative; Any person who acts on behalf of another”. Notably, the term is already in use in the HCCA, as the designation for a person appointed to make one or more decisions under that statute: extending its usage more broadly may have the benefit of simplification as well as clarification. It should be acknowledged that the use of the term in British Columbia and the Yukon in the context of the more fluid “representation agreements” might cause some confusion.
Overall, the LCO believes that the use of the term “decision-making representative” rather than “substitute decision-maker” or guardian would reduce confusion regarding the roles of persons appointed to carry out these duties. Use of the full phrase helps to avoid confusion with the use of the term “representative” under representation agreements in other jurisdictions.
The LCO has considered whether this clarified terminology should also extend to persons acting under a power of attorney. The term “power of attorney”, while widely used, is highly confusing to non-lawyers, who tend to misunderstand not only the meaning of “attorney” in this context, but also the reference to “power”, which seems to emphasize the rights of the actor, rather than the serious and significant duties involved. Clarification of the terminology would also be highly beneficial here, but the LCO is concerned that the wide usage of the term “power of attorney” would make it difficult to replace in popular discourse, and might lead to more confusion than clarification.
DRAFT RECOMMENDATION 17: The Ontario Government amend the relevant legislation to replace the terms “substitute decision-maker” and “guardian” by the term “decision-making representative” so as to clarify that this individual is not intended to impose her or his own values in a pure best interests approach, but instead must take into account the values, preferences and life goals of the individual.
2. A Clear Duty to Accommodate for Service Providers
The duty to accommodate and its relation to legal capacity, decision-making and guardianship law was discussed in Chapter IV. As was outlined there, the human rights principle of accommodation is established in Charter jurisprudence, as well as both the federal and Ontario Human Rights Codes. In particular, the Ontario Code imposes a duty to accommodate in respect of services, where an individual is unable to fulfil an essential duty or requirement due to, for example, age or disability (as well as all other Code grounds). It would appear then, that service providers who fall within the jurisdiction of the Ontario Code are required to accommodate persons who, because of their disability, may have difficulty in meeting the legal test of capacity; however, the specific content of this duty is far from clear.
At minimum, this duty likely involves a requirement on service providers to accommodate, for example, through methods of communication, or the timing or environment surrounding the service, where such accommodation is necessary for the individual to demonstrate their ability to understand and appreciate the requisite matters and therefore to receive the service, and where such accommodation does not amount to undue hardship.
From discussions with a range of stakeholders and individuals during the consultations, it appears that service providers have in the past not infrequently provided informal accommodations for individuals whose legal capacity was unclear. However, as was noted in Chapter II, there is a strong trend, across all sectors, towards increasing formality and a restrictive approach towards legal capacity issues. Some have pointed towards this trend as one of the reasons for the need for supported decision-making arrangements, as a formal means of replicating the benefits of these informal arrangements.
The LCO is sympathetic towards the confusion that service providers may experience in this difficult area, without any clear guidance as to the nature and extent of their duty to accommodate, and believes that a clear statement of the nature of the duty to accommodate in this area would be of benefit both to service providers, and to individuals and their families.
Clarification could be provided in at least two ways. Legal capacity, decision-making and guardianship laws could include provisions regarding the duty to accommodate. This would enable guidance to be specifically tailored to this context and integrated with other aspects of the law. One drawback to this approach would be the development of a body of interpretation and caselaw separate from the main body of human rights law in the province of Ontario.
Another approach would be to create clarity through mechanisms associated with the Code itself. Regulations could be drafted under the Code, as was done to provide guidance to landlords about the types of information that could be sought in a rental application. It should be noted that banks fall under the federal human rights statute, and so would not be captured by such a regulation. As well, some service providers may fall within the ambit of the Charter of Rights and Freedoms, so that the duty to accommodate is raised within that context and that jurisprudence. Alternatively, the Ontario Human Rights Commission (OHRC) could create specific guidelines on this issue, pursuant to its powers under section 30 of the Code. Such policies or guidelines have persuasive power, but are not specifically binding. Section 45.5 of the Code states that the Human Rights Tribunal of Ontario (HRTO) may consider policies approved by the OHRC in a human rights proceeding before it. Where a party or an intervener in a proceeding requests it, the HRTO shall consider an OHRC policy. Section 45.6 of the Code states that if a final decision or order of the HRTO is not consistent with an OHRC policy, in a case where the OHRC was either a party or an intervener, the OHRC may apply to the HRTO to have the HRTO state a case to the Divisional Court to address this inconsistency.
In developing guidance regarding the duty on the part of service providers to accommodate with respect to legal capacity and decision-makers, the LCO suggests that further consultation be conducted with service providers and other key stakeholders, so as to be better able to provide clear and practical guidance for the range of contexts and constraints in which these issues arise.
DRAFT RECOMMENDATION 18: The Ontario Government take steps to clarify the scope and content of the human rights duty to accommodate as it applies to service providers with respect to legal capacity and decision-making, including by consulting with service providers and other key stakeholders.
3. Personal Support Authorizations
As was described at length in the Discussion Paper, the most common forms of supported decision-making in Canada are the representation agreements and supported decision-making authorizations in British Columbia, Alberta and the Yukon. Those interested in the detailed workings of these arrangements can reference the descriptions in Part III, Ch1.D.2 of the Discussion Paper.
Because British Columbia’s representation agreements employ a non-cognitive test for their creation, they are available to a much wider segment of the population than any other personal appointment process in Canada. The ability of a representative to act either to support decision-making or to make decisions on the individual’s behalf makes the instrument either more flexible or more ambiguous, depending on one’s point of view. The Canadian Centre for Elder Law conducted a review of supported decision-making laws in the Western Canadian jurisdictions as part of a commissioned paper for the LCO. While interviewees who were participating in representation agreements were generally positive about the experience, experts within the system had a more mixed response. Lawyers continue to have concerns about lack of clarity and ease of misuse, and others pointed to improper usage of representation agreements as a “more palatable form of substitute decision-making”. Third parties find these arrangements unclear and expressed concerned about what these agreements mean for responsibility and liability.
Alberta’s newer supported decision-making authorizations are restricted to personal care decisions. Supporters are prohibited from making decisions on behalf of an adult and a decision made or communicated with assistance is considered a decision of the adult. To enter into a supported decision-making authorization, the individual must understand the nature and effect of the document, which restricts these arrangements to individuals with stronger decision-making abilities, generally those on the borderlines of what would be required for independent legal capacity. The authorizations retain validity so long as the creator retains the capacity necessary to create them – that is, they do not endure if capacity diminishes. These authorizations are still very new, as the legislation only came into force in 2009. However, the available information indicates a very positive response, with no widespread concerns regarding abuse or misuse.
The LCO’s project on Capacity and Legal Representation for the Federal RDSP ultimately recommended that the Government of Ontario implement a process that would enable adults to personally appoint an “RDSP Legal Representative” to open or manage funds in an RDSP, where there are concerns about their capacity to enter into an RDSP arrangement with a financial institution.
The LCO does not favour the broad representation agreement approach adopted in British Columbia: the ability of those appointed to act as either substitutes or supporters is liable to abuse, as well as producing confusion. The Alberta approach of support authorizations provides a more promising model for overall reform to decision-making approaches.
In keeping with the accommodation-based approach to legal capacity and decision-making adopted in Chapter IV, the LCO believes that personal support authorizations can, if properly structured, provide an accessible means of addressing the needs of persons who are near the borderlines of legal capacity. In structuring such arrangements, it is important to be sensitive to the risks of abuse, identified by a number of stakeholders, as well as to the concerns regarding clarity and legal accountability expressed by those who enter into agreements with individuals who are not able to make decisions independently.
To reduce the risk of abuse and provide clarity, a supported decision-making arrangement should, in the view of the LCO:
· Set the threshold for legal capacity to create an authorization at an appropriate level: In Chapter IV, the LCO recommended that a functional and cognitive approach to legal capacity be retained. To enter into a support authorization, an individual should understand the nature of these arrangements, and that they entail some risk. Support authorizations are not an appropriate arrangement for persons with very significant impairments to their decision-making abilities: in those situations, higher levels of responsibility and accountability should be accorded to the arrangement. The LCO therefore proposes a test that draws on the common-law definition of test of capacity to grant a power of attorney: the ability to understand and appreciate the nature of the authorization. This is consistent with the approach recommended in the LCO’s project on Capacity and Legal Representation for the Federal RDSP. That Report did identify as a secondary option the use of the more flexible criteria adopted in British Columbia’s Representation Act: however, the broader scope of these proposed personal support authorizations, and the potential lack of the basic oversight provided in the RDSP context by interaction with a financial institution makes such criteria less appropriate in this context. Personal support authorizations may provide a solution for some individuals who currently face barriers to opening an RDSP account; the network decision-making considered in the next section, and the limited purpose appointments proposed in Chapter IX may provide solutions for others.
· Focus on more concrete, day-to-day or routine decisions: The LCO does not believe that support authorizations are appropriate for situations where significant assets or very complex issues are at stake, both because these circumstances may provide incentives to abuse and because the potential risks to those supported are high. The LCO’s view on this is influenced by the newness of these types of arrangements: limited implementation of support arrangements may provide evidence on how these types of arrangements may be structured to provide positive outcomes in a wider range of circumstances. Further, for many individuals directly affected by this area of the law, most, if not all, decisions fall into this category. Combined with the LCO’s recommendation in Chapter VIII regarding the ability to appoint a decision-making representative for single decisions, these types of arrangements may provide a means for a significant number of individuals to avoid the imposition of guardianship. The LCO believes that support authorizations should extend to routine decisions related to property, as well as to personal care decisions, particularly given the ways in which decisions related to property and personal care may intertwine. Routine decisions may include, for example, payment of bills, receiving and depositing pension and other income, making purchases for day-to-day needs, or making decisions about daily activities or diet.
· Include clear duties for supporters, to address concerns related to misuse or abuse of these arrangements: Supported decision-making focuses on processes and not outcomes, so that supported individuals are entitled to take risks in the areas covered by the arrangement. Where the duties of supporters have been enumerated in legislation in other jurisdictions, they focus on the roles and responsibilities of the supporter in the decision-making process, rather than on setting benchmarks for the decision.
· Include monitoring arrangements: Because support arrangements focus on process rather than outcomes, it is more difficult to determine whether a supporter is in fact fulfilling his or her duties. The appointment of a monitor may address some of these concerns. The roles, powers and responsibilities of monitors are further discussed in Chapter VI. It is the LCO’s view that, considering the nature of support authorizations, a monitor should be mandatory and not optional, and that the monitor should be a person who is not a family member and does not have a conflict of interest for the decision in question.
· Ensure clarity regarding accountability for decisions: While supporters would be liable for compliance with their statutory responsibilities, the decision would be that of the supported person.
It is not the intent of the LCO’s draft recommendation to propose precise wording for legislation or to fully work out all details of a statutory support authorization regime, but rather to identify the key elements for such authorizations.
In drafting legislation to enable support authorization, there will be a number of issues to which consideration must be given, including execution requirements, the processes associated with withdrawal by a supporter, termination of a support authorization by the creator, and the remedies available to the parties to a support authorization, in case of dispute or allegations of misuse. In general, it is the LCO’s view that technical processes and requirements should, to the degree possible, be harmonized with those for powers of attorney. The LCO has identified some instances where the process-oriented nature of support authorization indicates that a different approach is required: there may be some others.
Chapter VIII of this Interim Report outlines a number of proposed fundamental reforms to Ontario’s dispute resolution and rights enforcement provisions related to legal capacity, decision-making and guardianship, including oversight of decision-making under the SDA through a reformed Consent and Capacity Board (CCB) rather than the Superior Court of Justice, providing the CCB with jurisdiction to provide directions and consider compliance with wishes regarding decision-making, and the opportunity for individuals themselves to bring forward applications regarding compliance with obligations. Mechanisms for resolving disputes and enforcing rights in relation to support authorizations will be crucial to the success of these authorizations: the exact mechanisms will depend on whether the LCO’s draft recommendations about dispute resolution and rights enforcement are taken up by government. At minimum, mechanisms must be put into place to enable meaningful oversight of compliance by a supporter with duties under the statute, and of resolving disputes regarding the validity or scope of support authorizations.
DRAFT RECOMMENDATION 19: The Ontario Government enact legislation or amend the Substitute Decisions Act, 1992 to enable individuals to enter into support authorizations with the following purposes and characteristics:
a) The purpose of the authorizations would be to enable persons who can make decisions with some help to appoint one or more persons to provide such assistance;
b) The test for legal capacity to enter into these authorizations would require the grantor to have the ability to understand and appreciate the nature of the agreement;
c) A standard and mandatory form should be created for these authorizations, to promote a minimum basis of universal understanding of these new instruments;
d) Through a support authorization, the individual would be able to receive assistance with day-to-day, basic routine decisions related to personal care and property;
e) Decisions made through such an appointment would be the decision of the supported person; however, a third party may refuse to recognize a decision or decisions as being that of the supported person if there are reasonable grounds to believe that there has been fraud, misrepresentation or undue influence by the supporter;
f) Support authorizations will only be valid if they include a monitor who is not a member of supported person’s family and who is not in a position of conflict of interest, with duties and powers as set out in Chapter VII;
g) The duties of persons appointed under such authorizations would include the following:
i. maintaining the confidentiality of information received through the support authorization;
ii. maintaining a personal relationship with the individual creating the authorization;
iii. keeping records with regards to their role;
iv. acting diligently, honestly and in good faith;
v. engaging with trusted family and friends; and
vi. acting in accordance with the aim of supporting the individual to make their own decisions;
h) Persons appointed under such authorizations would have the following responsibilities:
i. gather information on behalf of the individual or to assist the individual in doing so;
ii. assist the individual in the decision-making process, including by providing relevant information and explanations;
iii. assist with the communication of decisions; and
iv. endeavour to ensure that the decision is implemented.
4. Exploring Network Decision-making
Many Canadians with disabilities, particularly those with intellectual or developmental disabilities, currently use personal support networks of various types to assist with social inclusion, manage funding and services, or to support person-directed planning. Some of these arrangements are completely informal. Others, such as those adopting British Columbia’s Vela Microboard model, are thoroughly formalized, using the legal tool of incorporation to receive funds on behalf of an individual, arrange services and act as an employer of record. Some of these networks may be considered to be, at least to some extent, decision-making entities. Since these personal support networks have affiliations with the community living movement, as does the concept of supported decision-making, it is not surprising that some networks see themselves as providing decision-making supports for persons who might otherwise be determined to lack legal capacity.
It should be noted that few individuals currently have access to the kind of personal relationships and supports that are necessary to constitute a functioning network. During the LCO’s focus groups, parents of adult children with disabilities frequently referenced the concept of a network, and noted that their creation and maintenance was extremely difficult.
While personal networks raise many interesting ideas and opportunities, the LCO’s interest is related to their decision-making roles. There is relatively little research on the forms and usages of personal support networks. The LCO commissioned contract research on personal support networks in the fall of 2014, with the aim of exploring potential connections and opportunities for personal support networks and alternative decision-making arrangements.
One theme to emerge from that research was that networks that engage in decision-making provide “something unique”:
[T]here is an apparent power to the group approach. Again and again, informants talked about something different, something that is added, by having a group of caring individuals who could bring a range of perspectives, check each others’ biases and assumptions and fill in for each other’s inevitable absences. Many spoke of the group approach as providing safety.
The bringing together of a group of people with diverse skills and perspectives to support one individual offers not only some checks against abuse, but also a unique form of decision-making. It may be debated whether or not network decision-making “qualifies” as supported decision-making: where a network reaches a decision, it is not necessarily that of the individual alone, whether or not there is a declaration of incapacity involved. However, it can provide a process that is supportive of the individual, includes the person in the decision-making process, and respects his or her life goals and values.
The LCO believes there is merit to formalizing network decision-making in legal capacity and decision-making law. Such a formalization would likely apply only to a relatively few individuals, as the vast majority of those who may not meet the threshold for legal capacity do not have personal support networks, formal or informal. However, it appears that network decision-making can work, and work well for some individuals.
By network decision-making, the LCO means a form of decision-making with the following characteristics:
· It includes three or more individuals who share responsibilities, at least one of whom is not a family member.
· It keeps the person for whom the network is formed at the centre, protecting and promoting his or her participation in the decision-making process, and adopting as its core purpose the realization of the individual’s values and life goals.
· It maintains a group process with the aim of collectively supporting a process which advances the autonomy and the achievement of life goals for the individual at the centre of the network.
Ideally, network decision-making could enable decisions on a broader range of issues than the LCO proposes be available through personal support authorizations: as a more formal process, with the inherent safeguards associated with multiple participants, there may be lower levels of risk associated with network decision-making.
The microboard process, which employs incorporation as a legal tool, has two particularly interesting aspects. One is that it can potentially provide decision-making supports in a way that does not necessarily require an assessment of legal capacity. The other is that incorporation provides a recognized and widely understood means of sharing legal responsibility and accountability within a group, as opposed to a single individual. The decision-making entity is itself accountable, rather than any single member.
As interesting as legal incorporation is as a means of formalizing network decisions, it also has its limitations. It adds, rather than reduces legal complexity: few individuals would be able to manage the costs and regulatory requirements of setting up a legally incorporated decision-making network, and third parties might find that it added to rather than reduced the challenges of identifying the authorization of an agreement or transaction. Further, it is not clear how well corporate accountability mechanisms would work in this particular context. As well, there is an uneasy pairing between corporate law and the ultimately private and personal nature of the decision-making at stake. There are symbolic as well as practical drawbacks.
However, it may be possible to adapt the following elements of an incorporation model to the legal capacity and decision-making process:
· A set of formal requirements for the network to identify and commit to, including:
o the purposes for the network;
o the principles for the operation of the network;
o the processes through which the network fulfils its responsibilities;
o record keeping requirements; and
o the roles for individual members of the network;
· A registration process through which the completion of foundational requirements is verified, together with basic annual filing requirements.
There are clearly costs and complexities associated with the development of a network decision-making model; however, the LCO believes that the concept merits further examination, with a view towards implementation in law, if feasible.
DRAFT RECOMMENDATION 20: The Ontario Government examine the practicalities of a statutory legal framework for network decision-making which would permit formally established networks of multiple individuals, including non-family members, to work collectively to facilitate decision-making for individuals who may not meet the test for legal capacity, with a view to developing and implementing such a legal framework if feasible.
Issues related to alternatives to substitute decision-making are one of the most challenging areas for law reform at this time. Proposals for reform recognize both that fundamental rights are at issue and that respect for the autonomy of persons with disabilities must be a priority, and that it is essential to avoid unfair allocation of risks and negative outcomes. At the same time, there is a diversity of both needs and desires among those directly affected by legal capacity, decision-making and guardianship laws. These are tensions that are inevitable in this area of the law, and will arise in any system adopted. The effort is to find the best balance for the current Ontario context.
These issues are being explored and debated in many parts of the world. The discussions in Ontario are one part of a much larger conversation. Through this continued debate and exploration, practical knowledge about positive approaches will be developed over time. The LCO’s proposals are intended to take a progressive approach to the area, allowing for some implementation of these new approaches. Experience with such law reforms may allow further steps to be taken at a later date, with fewer concerns regarding abuse and misuse.
In this Chapter, the LCO has recommended reforms to:
· clarify and strengthen the duties of SDMs to base their decisions in the values, preferences and life goals of the individual affected;
· clarify the duty of service providers to accommodate with respect to the legal capacity of persons to whom they provide services;
· allow individuals to create support authorizations to enable them to obtain support from trusted individuals with respect to personal care and limited property management matters; and
· examine the practicalities of a statutory legal framework for decision-making networks.
The LCO’s proposals in this Chapter must be understood in the context of the full range of the draft recommendations in this Interim Report. Draft recommendations aimed at better promoting and protecting autonomy are found throughout and include:
· proposals in Chapter V aimed at improving the quality and appropriate use of assessments of capacity, to avoid unnecessary or excessive removal of decisional autonomy from individuals;
· reforms to rights enforcement and dispute resolution systems proposed in Chapter VIII: these would, if implemented, make it easier for individuals to challenge inappropriate use of substitute decision-making;
· proposed reforms to external appointment processes set in Chapter IX: these would strengthen opportunities to divert individuals from guardianship, and enable more tailored and limited approaches to guardianship; and
· proposals in Chapter XI to strengthen the provision of education and information, in order to reduce misuse or misapplication of current provisions of the law and improve the understanding and skill of substitute decision-makers, for example in supporting the participation of individuals decision-making.
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