A. Introduction: the Frameworks for the Law as It Affects Older Adults and Persons with Disabilities
As was highlighted in Chapter I, this project grew out of the LCO’s two Framework projects on the law as it affects older persons and the law as it affects persons with disabilities, which were completed in 2012. These two sister projects aimed, not to create specific recommendations for changes to particular laws, but to develop approaches to law reform relating to these two communities. They were undertaken contemporaneously to better appreciate their overlap, but separately in order not to conflate the experiences of aging and of living with a disability. Both projects also incorporated consideration of the heterogeneity within these communities. These projects resulted in comprehensive Reports as well as the Frameworks, which set out step-by-step approaches to evaluating laws, policies, practices and law reform proposals related to the two groups, based on a set of principles and considerations. From its inception, this project was intended to apply the considerations and principles that underpin the Frameworks to the law of legal capacity, decision-making and guardianship, to develop recommendations for reform to law, policy and practice.
Appendix F of this Paper sets out the Principles and Considerations for Implementation of each of the Frameworks for easy reference. The full Frameworks also contain a step-by-step process for evaluating laws, policies and practices, including a set of questions that assist in identifying and analyzing the application of the principles and considerations to the law. The full Frameworks and their accompanying Reports can be accessed online through the LCO’s website at http://www.lco-cdo.org/en.
This grounding of the project in the Frameworks has had implications for its every aspect, including the following:
Focus on substantive equality for persons with disabilities and older adults: Most profoundly, adopting a Framework analysis means that the LCO’s analysis of the impact of the law and of its effectiveness has focused on the experiences of persons with disabilities and older adults who are affected by these laws, and that the ultimate intent of the recommendations is to advance the substantive equality of these individuals. It also means that the analysis is rooted in the Framework principles, which are themselves derived from foundational laws, such as the Charter of Rights and Freedoms and the Ontario Human Rights Code, and from international instruments such as the International Principles for Older Persons and the Convention on the Rights of Persons with Disabilities (CRPD).
Emphasizing an inclusive law reform process: As well as the substance of the analysis and draft recommendations, the Frameworks have shaped the project process. Step 2 of each of the Frameworks sets out considerations for reviewing or developing new legislation. These focus on the meaningful inclusion of older adults and persons with disabilities in the process of review, including processes for research, public consultation, communications and analysis.
Considering the implementation gap: The problem of the “implementation gap” plays a central role in both Frameworks. Even where laws are based on a thorough and nuanced understanding of the circumstances of older adults or persons with disabilities and aim to promote positive principles, their implementation may fall far short of their goals. There may be many reasons for the implementation gap: problems with misunderstandings of the law, negative or paternalistic attitudes on the part of those responsible for implementing it, and shortfalls in mechanisms for access to the law, including systems for rights enforcement and dispute resolution. The Frameworks therefore focus not only on the substance of the law, but also on how it is applied in practice, and encourage users to consider shortfalls not only in the law itself, but in the policies and practices that accompany it. The implementation gap plays a significant role in critiques of Ontario’s legal capacity, decision-making and guardianship laws.
This Chapter provides an overview of the Frameworks, and of how the principles and considerations have been applied in this project. As well, each Chapter explicitly considers the application of the Frameworks to the particular issues raised in that Chapter.
B. Applying the Frameworks: Considering the Contexts in Which the Law Operates
Step I of the Frameworks asks users to consider the context of the particular law being evaluated, including how that context may relate to or affect the attainment of the principles, and the challenges or constraints implicit in that context.
There are a number of contexts that were brought to the LCO’s attention during research and consultations as crucial to take into account in developing recommendations for improvements to law, policy and practice in the area of legal capacity, decision-making and guardianship.
Connecting the issues to broader issues of disability and elder rights: Issues related to legal capacity and decision-making cannot be separated from broader issues of disability and elder rights. The application of the LCO’s Frameworks to this area makes this broader connection clear. It is also highlighted by the significant role of Article 12 of the United Nations CRPD. Persons with disabilities and older persons, as well as their advocates, have framed issues related to legal capacity and decision-making as central to the achievement of equality, dignity and autonomy for these groups. For example, ARCH Disability Law Centre has stated,
Due to the manner in which guardianships are created, and the broad-reaching nature of guardians’ power and obligations, guardianships have the potential to significantly impact the rights of persons with disabilities who have capacity issues. These are fundamental human rights, including the right to legal capacity, the right to self-determination, and the right to substantive equality.
Demographic and social trends and pressures: The Discussion Paper briefly highlighted some of the key demographic and social trends affecting this area of the law, including the aging of Ontario’s (and Canada’s) population, and changes in family structures. Because cognitive impairments resulting from stroke or dementia are more likely with age, the aging of Ontario’s population is bringing issues related to legal capacity and decision-making into greater prominence and placing increasing pressure on existing supports and services. The trend towards smaller and more geographically dispersed families means that fewer Ontarians who are unable to make decisions independently will have a family member who is both willing and available to provide these important supports.
Also important to consider is the growing cultural and linguistic diversity of Ontario. Looking at Toronto alone, over 140 languages and dialects are spoken in the city, and over 30 per cent of the population speaks a language other than English or French at home. Half of Toronto’s population was born outside of Canada. There is a significant population of Franco-Ontarians, particularly in Eastern and Northeastern Ontario, and despite their linguistic rights, they may face challenges in accessing information and services in their own language, as the LCO heard during the course of its consultations. As well, attention must be paid to the cultural, linguistic and other needs of Aboriginal Ontarians. This diversity requires knowledge and sensitivity in the provision of information and education about this area of the law, in the provision of supports for navigating the law, and in the assessment of legal capacity, where linguistic or cultural barriers may affect the outcome of the assessment. In translating from one language to another, simple transcription or rendering of words may not be sufficient. Words and concepts are embedded in a cultural context involving historical, social, religious and other factors. The literal meaning of a word or concept in another language may not reflect how it is actually understood in another language. Therefore, to the extent possible, we need to provide not only translation, but cultural translation; this may require that written or oral supports be prepared not first in English or French but in the relevant other language.
The impact of social isolation and marginalization: Consultations widely emphasized the social isolation and marginalization affecting those most deeply affected by this area of the law, and the significant implications of this for any approach to law reform. Older persons will often have outlived their families and social networks, or family members or friends who remain may themselves be frail or in need of assistance. Parents of adults with intellectual or developmental disabilities stressed the significant efforts that they had put into developing networks for their adult children, how difficult it was, and how limited the results of this effort had often been. Persons with significant mental health disabilities often find themselves very socially isolated. The lack of strong social networks around persons who require assistance with decision-making limits the options for who provides assistance – the only people who are available and willing may not be truly appropriate – as well as creating greater opportunities for abuse and limiting the ability to access redress. That is, broader societal challenges related to the principle of promoting social inclusion and participation for persons with disabilities and older adults are an important context for this project and a challenge for law reform.
The connection to social, health and financial services: Legal capacity and decision-making issues do not, for the most part, arise in a vacuum, but in the context of the delivery of particular services and supports to specific communities. The implementation of legal capacity and decision-making laws is inextricably tied to how those services and supports are structured and delivered, and they are delivered through different Ministries and regulatory regimes, to different populations in different contexts, and based on different assumptions. The particular ways in which these laws play out is quite different for persons living in long-term care, for example, than it is for persons living in group homes.
The family context: The laws in this area are implicitly premised on the ability and willingness of family members to provide supports and assistance as necessary. For the most part, those acting formally or informally with or on behalf of persons who face challenges in making decisions are family members (or otherwise have a personal and intimate relationship with the person). They provide this assistance as part of their understanding of their family roles and responsibilities, and for the most part they provide it with little in the way of formal supports. This role is often extraordinarily challenging, and families may make significant financial, emotional and personal sacrifices in order to carry it out to the best of their abilities. It is difficult to see how these roles could be effectively fulfilled if family members did not so often voluntarily assume them.
However, it is important to acknowledge that family members may not always be well-equipped to take on this role, which may require them to act as navigators, problem-solvers and advocates in very confusing systems involving large and powerful institutions. Persons with mental health disabilities pointed out to the LCO that their family members might not have the knowledge to be their advocates and supporters within the mental health system, or might be intimidated by the expertise of psychiatrists and other professionals and instinctively defer to them. A brain injury survivor told the LCO how his spouse became statutory guardian of property following his accident: while she was motivated to do the best she could, she did not have the skills or knowledge to manage this role well.
And while it is often the expectation that family members will act in a selfless way to maximize the wellbeing of the individual who needs assistance, this expectation overlooks that family members will have needs, rights and interests of their own that may conflict with those of the individual who requires assistance. The ongoing nature of family relationships creates tangled webs of dependencies and expectations which may at times sit uneasily with the needs of the individual. There are situations where family members have clearly exploited a vulnerable individual for their own benefit, but there also situations where meeting the needs of the individual will create considerable hardship for other family members. There are also situations where it is less clear as to what might be reasonable expectations or arrangements within the family context. For example, several consultation participants raised the scenario where a family member who provides substantial care and support to a person with a disability may also be dependent on his or her ODSP benefits and allocate those benefits to the use of the family unit and not the individual. The complexities of family dynamics are inescapably part of the operation of capacity and decision-making laws.
Family interactions are also deeply grounded in gender and culture. There may be inherent assumptions about how decisions get made and who carries them out that may affect how capacity and decision-making laws are implemented. There may be assumptions, for example, about who manages financial issues or who makes the final decision in an emergency or a dispute that fit uneasily with the requirements in Ontario’s legislation.
The trend towards formalization: The consultations revealed an underlying debate about the degree of formality appropriate in this area of the law. A less formal system is simpler and less intimidating for families to access, and reflects the daily and personal nature of the issues. It avoids labelling and stigmatizing the person who requires assistance. However, as informal systems are by their nature less amenable to education and oversight, they also carry with them enhanced risks of misuse and abuse.
There is no clear correct level of formality for this area of the law: inevitably, stakeholders and those affected will have a wide range of opinions on this point. the lco has attempted to be mindful of the competing benefits of formality and informality in crafting draft recommendations for consideration. in general, there is a trend towards greater formality in the provision of services, whether social, health or financial. there are a variety of reasons for this, including the implementation of privacy laws, money laundering requirements for financial services providers, and a perception that we live in an increasingly litigious society (with the accompanying tendency to seek clear protocols and documentation). as a result, the informal arrangements that many families rely on in this area are declining. this has significant implications for the LCO’s recommendations in a number of areas.
While these contexts must be taken into account in making recommendations, they also highlight the inherent limitations of the law and law reform in this area. While supportive communities of caring individuals around persons who need assistance with decision-making can be the best protectors against abuse or mistreatment, as well as the best providers of supports and assistance to these individuals, no law can, on its own, create such communities. The law is a very blunt and often ineffective tool for shaping family dynamics. There are inherent ethical challenges in this area that no law can completely resolve. And it is not the role of the LCO in this project, nor does the LCO have the expertise, to make recommendations for sweeping reforms to the way Ontario provides health, social or long-term care services. Even the most effective possible law reform in this area would not remove all the many challenges in dealing with these issues. However, law can provide a clear and meaningful framework within which many of these issues can be worked out, and effective law reform in this area would go some significant way to reducing the challenges.
C. Applying the Frameworks: Understanding the Groups Affected
Understanding the lived experience of those who are directly affected by the law requires attention to factors such as low-income, gender, cultural differences, racialization or Aboriginal status, geographical location, family or marital status, sexual orientation, gender identity and expression, or other aspects of identity. As well, the application of both Frameworks focusses attention on how the law in this area is experienced differently by affected individuals depending on the nature of the disability and the point along the life-course at which it is incurred, reflecting the importance of a life-course analysis.
Neither the Substitute Decisions Act, 1992 (SDA) nor the Health Care Consent Act, 1996 (HCCA) specifically refers to any particular class of persons. The SDA provides mechanisms for the appointment for an SDM for any person who is or may be determined to be legally incapable within its provisions and with respect to whom particular types of decisions are required. The HCCA applies very broadly to any person whose consent is required for treatment, admission to a care facility or with respect to personal assistance matters. Particularly with respect to treatment matters, any citizen of Ontario who falls ill may potentially find themselves not meeting the standard of legal capacity for consent to treatment: in such circumstances the HCCA provides mechanisms for the appointment of and guidance for the decisions by SDMs.
However, it is clear that some persons will be more likely to be found legally incapable under one or the other of these statutes. Persons with developmental, intellectual, neurological, mental health or cognitive disabilities are both more likely to be found legally incapable to make specific decisions within the definitions of these statutes, and to be informally assumed to be incapable and therefore subject to assessments and other provisions of the statutes. Because older persons are disproportionately affected by some types of cognitive disabilities, older persons may also be disproportionately affected by this area of the law; in addition, older adults may be treated as lacking capacity even though this is not the case, merely by virtue of age.
It would be difficult to overstate the diversity among those directly affected by capacity and decision-making laws. Interested readers can find background information on demographic and other characteristics of groups most often affected by this area of the law in Part I, Chapter I of the Discussion Paper.
The impact of the law differs greatly for those whose challenges with decision-making are episodic or increasing, as compared to persons whose needs are stable. The predictability of how much assistance with decision-making is needed has a significant effect on the practical ability of family or friends to provide supports, of third parties to accommodate needs for supports, and of the law to ensure that supports and accommodations are provided as appropriate. During the consultations, the LCO frequently heard of the importance of clarity and certainty in the law; we also as frequently heard of the importance of flexibility and nuance. It is not unusual for an individual to be able to independently make a particular decision in the morning and be unable to do so in the afternoon, or to be unable to independently make a decision this week that could be made last week. While there was broad agreement that individuals should be able to make decisions independently whenever they are able to do so, there was also acknowledgement that the practicalities of this may be particularly daunting for those with fluctuating levels of decision-making ability.
The stage of life at which needs for assistance with decision-making arise has considerable implications for the nature and extent of social and economic supports available to the affected individual. For example, an older person who has recently developed dementia or had a stroke may have much more extensive financial assets than a younger person who has experienced life-long economic marginalization resulting from disability. These more significant assets may be of assistance in purchasing supports, but they may also create a substantial temptation to abuse and exploitation. The stage of life may also shape the extent and nature of personal supports and type of services available, how they are provided, as well as the needs and aspirations of the individual receiving assistance.
As well, a person who has lived with a disability affecting decision-making throughout his or her life may have a significantly different idea of what autonomy or risk means than a person who has developed a disability later in life. Older persons developing disabilities later in life tended, during the consultations, to focus their aspirations on preserving the identity and values that had informed their lives prior to the development of disability – in some sense, on binding their future selves so as to create a continuous and coherent narrative with the life that they have previously lived. Younger persons with disabilities affecting their decision-making expressed more interest in having the opportunity to change and grow, to discover a new future self, and to having their present decisions respected. This has implications for the nature of the assistance they are interested in receiving, and for the kind of process that is appropriate.
Cultural diversity, economic disparities, and gender roles and assumptions must also be taken into account. Gender and culture may affect the personal supports available, who will provide them, and how they are provided. For example, the LCO heard that the hierarchical list of substitute decision-makers in the HCCA may conflict with cultural expectations that the eldest son makes decisions, causing practical difficulties for healthcare staff. Traditional gender roles within marriage may affect the abilities and expectation of spouses in relation to decisions about finances or personal care, particularly where a spouse is expected to take on decision-making in an area that falls outside of traditional roles.
While many of the groups frequently affected by this area of the law experience stigma and marginalization, the particular negative attitudes and how they are expressed differ from group to group. For example, both persons with mental health disabilities and older persons experience negative assumptions about their capabilities and a tendency towards paternalism, but how those assumptions and tendencies are expressed tends to differ considerably between the two groups: paternalism towards persons with mental health disabilities may focus on the desire to “fix” them, while for older persons, attitudes may be more infantilizing.
It is not surprising, therefore, that during the consultations the LCO observed significant differences in what various groups hoped for from the law and identified as goals for law reform. However, it is also important to emphasize what is widely shared among groups directly affected by these laws: concerns regarding social isolation, stigmatization and marginalization, and a profound desire for inclusion, freedom from abuse and mistreatment, and for respect for them as individuals and for their values and aspirations.
D. The LCO’s Framework Principles and This Area of the Law
This section briefly outlines the six Framework principles and their general application to legal capacity, decision-making and guardianship laws.
1. Respecting Dignity and Worth
The Law as It Affects Older Adults
This principle recognizes the inherent, equal and inalienable worth of every individual, including every older adult. All members of the human family are full persons, unique and irreplaceable. The principle therefore includes the right to be valued, respected and considered; to have both one’s contributions and one’s needs recognized; and to be treated as an individual. It includes a right to be treated equally and without discrimination.
The Law as It Affects Persons with Disabilities
This principle recognizes the inherent, equal and inalienable worth of every individual, including every person with a disability. All members of the human family are full persons, with the right to be valued, respected and considered and to have both one’s contributions and needs recognized.
The pervasive negative stereotypes and attitudes about persons with disabilities and older persons described in the Framework Reports inevitably influence how this area of the law is interpreted and applied. Reactions to the law, and its practical implementation, must be understood in the context of a society where worth is often perceived as synonymous with intelligence, ambition and the ability to successfully compete according to preconceived standards. Too often, persons with disabilities and the very old may be implicitly assumed to be less worthy of attention and concern than others, and seen as burdens with little to contribute. They may be presumed to have fewer abilities than they actually have, or it may be assumed that their feelings and wishes are not sufficiently meaningful to take into account in decision-making.
As discussed in Chapter II, the current legislation codifies a presumption of capacity to contract, and for matters falling within the HCCA. It also takes an approach to the concept of legal capacity which is based, not on age or a particular medical diagnosis, but on the abilities of the individual to carry out the task in question – that is the making of a particular decision or type of decision – in a specific context. These approaches were intended to guard against the unwarranted removal of rights based on assumptions and biases. In practice, of course, because we live in a society where older adults and persons with disabilities are commonly the subject of negative assumptions, these assumptions may also affect the implementation of the legal capacity, decision-making and guardianship law.
While it was of course not intended that the designation of an individual as “legally incapable” be stigmatizing, in practice, that is how it may be experienced. In particular, parents of adult children with disabilities told the LCO that they had put considerable effort as parents into emphasizing their children’s abilities and potential rather than their deficits, so that a designation of their adult child as “incapable” seems to run counter to the entire philosophy with which they had approached their children, and with which they hoped society could learn to approach them.
2. Promoting Inclusion and Participation
The Law as It Affects Older Adults
This principle recognizes the right to be actively engaged in and integrated in one’s community, and to have a meaningful role in affairs. Inclusion and participation is enabled when laws, policies and practices are designed in a way that promotes the ability of older persons to be actively involved in their communities and removes physical, social, attitudinal and systemic barriers to that involvement, especially for those who have experienced marginalization and exclusion. An important aspect of participation is the right of older adults to be meaningfully consulted on issues that affect them, whether at the individual or the group level.
The Law as It Affects Persons with Disabilities
This principle refers to designing society in a way that promotes the ability of all persons with disabilities to be actively involved with their community by removing physical, social, attitudinal and systemic barriers to exercising the incidents of such citizenship and by facilitating their involvement.
Stakeholders emphasized during the consultations that many of the groups most profoundly affected by this area of the law, including persons with cognitive, neurological, mental health or intellectual disabilities, the very old and persons living in long-term care, are disproportionately likely to be socially isolated. This may be for several reasons: they have outlived their social networks, or stigma and marginalization associated with their disability has inhibited their ability to develop networks, or the barriers naturally associated with living in a congregate setting, for example. Many people without disabilities are also socially isolated – families are smaller than in the past and increasingly geographically dispersed, not all families are supportive, and not every person is drawn to large social networks.
This tendency towards social isolation for those most affected has many implications for law reform in this area. Current legislation assumes that the first, most favoured and predominant source for decision-making assistance will be family and close friends. This assumption makes sense on many levels: it is those with close personal relationships with us who can best understand and convey our wishes and values; these are also the people who are most likely to be willing to take on what is a very challenging and consuming responsibility, and to try to do so in a way that supports and respects us. However, many individuals do not have such relationships, or the relationships they do have may be negative or exploitive. Ontario currently provides the Public Guardian and Trustee as a decision-maker for those who find themselves without family or close friends who are willing and available to act.
The lack of intimate and supportive personal relationships among a significant number of persons who require assistance with decision-making poses particular challenges for the “supported decision-making” approach discussed in Chapter VI, as this approach sees these intimate relationships as essential to providing assistance in a way that preserves the legal capacity of the person in question. Thus, some proponents of supported decision-making have proposed that government should have a role to play in fostering such relationships or (for some proponents) in providing paid supports that can approximate this kind of intimate and trusting relationship.
3. Fostering Autonomy and Independence
The Law as It Affects Older Adults
This principle recognizes the right of older persons to make choices for themselves, based on the presumption of ability and the recognition of the legitimacy of choice. It further recognizes the rights of older persons to do as much for themselves as possible. The achievement of this principle may require measures to enhance capacity to make choices and to do for oneself, including the provision of appropriate supports.
The Law as It Affects Persons with Disabilities
This principle requires the creation of conditions to ensure that persons with disabilities are able to make choices that affect their lives and to do as much for themselves as possible or they desire, with appropriate and adequate supports as required.
The principle of fostering autonomy and independence is very clearly linked to issues of legal capacity and decision-making, to the extent that legal capacity has sometimes been conceptualized as “the effective threshold of autonomy, dividing the autonomous, on the one hand, from the non-autonomous, on the other, on the basis of an individual’s ability to engage in the process of rational (and therefore autonomous) thought”. In practical terms, a determination of incapacity may legitimate unwanted intervention in the life of an individual who has been so identified.
Current legal capacity and decision-making laws implicitly place limits on the ability to make unwise choices or to take risks based on the standard for capacity: if you are able to understand the decision that you are making and appreciate its risks and benefits, your choices will not be interfered with, no matter how unwise, unless they interfere with some more general rule or law. That is, for a person to assume the risks of a negative outcome, that person must be able to understand that such an outcome may occur, and to factor that into the decision. If a person is unable to understand the relevant information and appreciate the risks and benefits, his or her substitute decision-maker may, based on the individual’s values and preferences and within the restrictions of the legislation, make that risky decision on the person’s behalf.
However, the relationship of this area of the law to autonomy and independence is not simple. As was highlighted in Chapter II, the current legislative framework was designed with the goals of minimizing unwarranted interference and enhancing self-determination. The presumption of capacity for certain types of decisions, the various procedural protections (such as the right to refuse a capacity assessment under the Substitute Decisions Act, 1992 (SDA), or the entitlement to rights advice under the Mental Health Act (MHA), as just two of many examples), the provisions requiring the exploration of least restrictive alternatives prior to a guardianship order by the court – all these are designed to ensure that limitations on autonomy are only applied where necessary.
As well, the law is, or attempts to be, nuanced in its approach to individual autonomy. For both personal and external appointments, the substitute decision-maker is directed to encourage the participation of the individual and to pay attention to their values and wishes. Powers of attorney allow individuals to direct when they wish to receive assistance with decision-making, from whom, and potentially the limits or conditions of that assistance. These examples highlight the way in which the legislation acknowledges as valid exercises of autonomy both the use of planning documents that may bind the future self (such as through powers of attorney, advance care planning and “Ulysses agreements”), and the expression of currently held values, preferences and choices. As was briefly noted in the previous section, these different exercises of autonomy will have greater or less importance for different populations or at various life stages, something which was very apparent during the LCO’s consultations with persons directly affected by legal capacity and decision-making laws.
Further, to a significant degree, this legislation is intended to safeguard autonomy and independence, by protecting individuals who are vulnerable due to illness or disability from being pressured or manipulated, or having their own goals and wishes outright overridden or ignored, to the benefit of an unscrupulous other.
However, the LCO has heard, from many perspectives, that there are ways in which the current law fails to sufficiently protect and promote autonomy and independence. The shortfalls may be in the wording of the law, or in its implementation. There may be insufficient mechanisms to “divert” individuals from substitute decision-making when appropriate assistance can be provided in another way. Persons under guardianship who no longer require such assistance may well have difficulty in challenging the guardianship, given that their guardian will generally have considerable control over their access to funds and supports. Lack of monitoring of substitute decision-makers together with lack of understanding of the requirements of the law may mean that family members or others may seriously overstep the limits of their responsibilities and exert an inappropriate level of control over the life of the person requiring assistance. Lack of resources and of understanding of the law, together with assumptions about the abilities of older persons or persons with disabilities may lead service providers to disregard the presumption of capacity, the decision-specific nature of capacity or the procedural rights of individuals. These and other issues affecting autonomy and independence are discussed throughout this Interim Report. In summary, the current approach is not sufficiently effective in ensuring that individuals retain control over their choices and their lives to the greatest degree possible.
In any discussion of autonomy, consideration must also be given to issues related to risk. Choice is not really choice if there is only a single standard for permissible decisions. That is, if we are to respect autonomy and independence, we must accept that individuals will make choices that others consider unwise or that involve some degree of risk. We cannot promote autonomy without accepting that sometimes things will end up badly for the individual making the decisions. It was evident during the consultations that for at least some stakeholders, the discussion of legal capacity and decision-making is at its heart a discussion about what kinds of negative outcomes we as a society are willing to tolerate. The question becomes especially acute when we are dealing with individuals who may already be living in very challenging circumstances, who are marginalized and have reduced resources, and who may be particularly vulnerable to exploitation or abuse. The challenges cannot be simply waived away. Service providers can find themselves facing very painful moral and ethical dilemmas.
As part of the recognition of persons with disabilities and older adults as full and equal persons, their ability to take risks must be respected. As was detailed at length in the Framework Reports, there is a lengthy history of paternalism towards both persons with disabilities and older adults, a tendency which has unduly restricted the lives of many individuals and led to negative results. During the consultations towards the development of the Frameworks, many older adults and persons with disabilities spoke of the importance of respecting their right to make choices about their own lives and in accordance with their own values, even where others disagreed. Older adults and persons with disabilities, like others, must have the ability to take risks and make mistakes. It is through this ability that we learn and grow, express our individuality and shape our own lives.
However, it is necessary to acknowledge that while we as a society place a very high value on autonomy and self-determination, we also accept many limitations on autonomy to reduce risk or harm (whether to the individual making the decision or to others), such as seatbelt and helmet laws, restrictions on smoking or regulation of the sale of alcohol, as only a few examples. To recognize the importance of autonomy is not to end the discussion about the assumption of risk.
The concept of “dignity of risk” highlights the close connection often made between autonomy – the right to choose for oneself in one’s own way, even if others disagree and even if significant negative consequences may result – and the notion of what it is to be human and to be respected as such. There are approaches to the concept of human dignity that rely very heavily on the concept of autonomy as an essential attribute of the human. Such approaches are discussed in the Framework Reports. In identifying its principles, the LCO clearly separated the principles of dignity and autonomy. It is not uncommon for humans to encounter situations in which their autonomy is limited, and it is the view of the LCO that such limitations should not affect the recognition of an individual’s fundamental humanity and right to be treated with respect.
Autonomy is also limited by individual circumstance and social context. We all of us must make decisions within the limits of existing social and personal limitations. This is particularly true for individuals who are more reliant on social and familial resources: the options available may be quite narrow. The Northumberland Community Legal Centre’s submission emphasized this point.
What the abovementioned assertions about individuals living in poverty and/or living with disability are meant to portray is that the possession of capacity, the ability to assert agency and to make choices for oneself, to be able to meaningfully participate, is dependent on the kinds of choices that are actually possible within a society. In a society where choice is quite often limited to what an individual can pay for, be it food, shelter, accessibility or otherwise, there will always be a significant segment of the population that falls through the cracks and, sadly, that significant segment will be our most vulnerable. Homelessness, income insecurity and mental health issues all lead to possible incapacity issues.
As is further discussed in relation to the principle of security or safety, there is a general understanding that there are circumstances where a decision is not truly “our own”. For example, where a decision has been entered into through fraud, manipulation or threats, we may not be held to its consequences: the doctrine of undue influence is one way in which the law recognizes this. Because persons with impaired decision-making abilities may be especially vulnerable to manipulation or pressure, concerns about abuse and how this may undermine self-determination are particularly important in legal capacity and decision-making laws.
The current standard for legal capacity – the requirement that an individual have the ability to understand and appreciate the relevant information – highlights the idea that individuals cannot be asked to assume the risks or negative consequences of a decision unless they have the ability to know of those risks or negative consequences and freely accept them.
In summary, while the principle of autonomy is central to this area of the law, it cannot be understood as having a single meaning for all those affected by issues of legal capacity and decision-making: individuals may understand and seek to achieve autonomy in different ways, depending on their circumstances and identities. Autonomy must be understood as shaped in multiple ways by our relationships with others. Autonomy must also be understood as having limits for everyone, not only because it must co-exist with other principles, such as those of membership in the broader community and of safety and security, but also because we all exist in contexts of personal constraints and limited choices. In seeking to reform this area of the law to better protect and promote autonomy, it is important to understand the inherent challenges and limitations of seeking to do so.
4. Respecting the Importance of Security/Facilitating the Right to Live in Safety
The Law as It Affects Older Adults
(Recognizing the Importance of Security) This principle recognizes the right to be free from physical, psychological, sexual or financial abuse or exploitation, and the right to access basic supports such as health, legal and social services.
The Law as It Affects Persons with Disabilities
(Facilitating the Right to Live in Safety) This principle refers to the right of persons with disabilities to live without fear of abuse or exploitation and where appropriate to receive support in making decisions that could have an impact on safety.
The principle of fostering autonomy and independence is often juxtaposed with that of respecting the importance of security or of facilitating the right to live in safety, with the two seen as being frequently in conflict, particularly in this area of the law.
Concerns about abuse of persons who have impaired decision-making abilities have been frequently raised throughout this project, and were a significant and recurring theme during the 2014 consultations. It is difficult to know how common abuse of persons lacking legal capacity is, as there is no means of gathering meaningful numbers at the present time. Anecdotally, it is a significant concern: during consultations, service providers indicated that they saw these types of issues on a regular basis. The available research on the nature and prevalence of abuse of persons affected by legal capacity and decision-making laws was reviewed in the Discussion Paper, Part IV, Ch. 1B. Access to finances appears to be a common motivator for abuse: even small amounts of money may pose a temptation to desperate or unscrupulous individuals. Dysfunctional family dynamics may also play a significant role. Certainly, the vulnerability of these individuals and the relatively low risk of consequences for abuse are important factors.
There is therefore reality to the often identified tension in this area between autonomy and security: legal capacity and decision-making law is often invoked to prevent or address abuse or exploitation, or to prevent an individual from taking or continuing on a course of action that will pose extreme risks or negative consequences for safety or wellbeing. For example, sections 27 and 62 of the SDA give the Public Guardian and Trustee the power to investigate and ultimately to apply for temporary guardianship where a person lacks legal capacity and “serious adverse effects” are occurring or may occur as a result. The imposition of substitute decision-making in response to abuse or negative living conditions does restrict that individual’s ability to make decisions for him or herself.
However, a person who is experiencing abuse or exploitation is already in a situation where their autonomy and independence is being restricted. Intervention may therefore in some situations create opportunities for greater choice and self-determination, as well as contributing towards the realization of other principles.
As part of the context that shapes this dynamic between autonomy and safety or security, it is helpful to keep in mind that, given the pressures on resources and supports available for individuals who are low-income or marginalized, the choices available to the individual may be, practically speaking, already very restricted. A lack of supports may place an individual in a condition of dependency on the abuser. Intervention, including imposition of a guardianship, may not be able to resolve the fundamental issues that are creating a vulnerability to abuse or exploitation.
A number of stakeholders suggested that the LCO explore a broader approach to addressing abuse of vulnerable adults, including older adults and persons with disabilities, which would not be restricted to persons lacking legal capacity. A few pointed to the adult protection legislation that exists in other jurisdictions in Canada and the United States. This type of broad adult protection legislation raises many issues and lies beyond the scope of this project, and it is not the LCO’s intention to make recommendations about adult protection laws.
Many of those consulted felt that the current law and policy is relatively weak in addressing abuse of persons lacking legal capacity and misuse of decision-making powers. There was a broad perception that current systems provide insufficient monitoring and oversight for those who act for persons whose decision-making abilities are impaired. Service providers expressed confusion and frustration as to how to address concerns about abuse, particularly those cases where there are reasons for concern, but no clear proof. Existing legal options, such as bringing an application for guardianship or for a passing of accounts, are often seen as confusing, intimidating and costly, and so not a realistic option for family or concerned friends, let alone third parties. Of course, the individuals themselves may not be at all in a position to identify concerns or seek assistance.
5. Responding to Diversity
The Law as It Affects Older Adults
(Responding to Diversity and Individuality) This principle recognizes that older adults are individuals, with needs and circumstances that may be affected by a wide range of factors such as gender, racialization, Aboriginal identity, immigration or citizenship status, disability or health status, sexual orientation, creed, geographic location, place of residence, or other aspects of their identities, the effects of which may accumulate over the life course. Older adults are not a homogenous group and the law must take into account and accommodate the impact of this diversity.
The Law as It Affects Persons with Disabilities
(Responding to Diversity in Human Abilities and Other Characteristics) This principle requires recognition of and responsiveness to the reality that all people exist along a continuum of abilities in many areas, that abilities will vary along the life course, and that each person with a disability is unique in needs, circumstances and identities, as well as to the multiple and intersecting identities of persons with disabilities that may act to increase or diminish discrimination and disadvantage.
As was discussed earlier in this Chapter, the groups directly affected by this area of the law are very diverse in their circumstances and needs. Gender, culture, language, sexual orientation and other aspects of identity further complicate the picture. And within any particular group, there remains a wide spectrum of needs and circumstances. For example, the nature and level of social and economic resources available to an individual will radically affect how he or she encounters the law in this area. Culturally influenced behaviour may be misunderstood by those who assess legal capacity if they are not trained or do not have access to culturally appropriate resources. Those who speak English or French as a subsequent language may have difficulty in accessing information about their rights, or in navigating this multifaceted area of the law. As understandings of diversity evolve, new needs for respect and responsiveness may continue to be identified.
Consultees emphasized the importance of flexibility and nuance in this area of the law, in order to address the individuality and diversity of needs for support and assistance. The need for clarity, simplicity and certainty in applying the law is frequently in tension with the need for approaches tailored to individual circumstances, including different manifestations of heterogeneity. This is one of the frequently raised critiques of the concept of “capacity” as something that one either has or does not have with respect to a particular decision or type of decision: many service providers and experts discussed the challenges of addressing those many individuals who fall within a “grey area” where the ability to make decisions independently is unclear or fluctuating.
6. Understanding Membership in the Broader Community/Recognizing That We All Live in Society
The Law as It Affects Older Adults
(Understanding Membership in the Broader Community) This principle recognizes the reciprocal rights and obligations among all members of society and across generations past, present and future, and that the law should reflect mutual understanding and obligation and work towards a society that is inclusive for all ages.
The Law as It Affects Persons with Disabilities
(Recognizing That We All Live in Society) This principle acknowledges that persons with disabilities are members of society, with entitlements and responsibilities, and that other members of society also have entitlements and responsibilities.
The principles of membership in the broader community and of recognizing that we all live in society recognize that older adults and persons with disabilities are bearers of responsibilities as well as rights; that none of us lives in isolation and that we must take into account the needs of the broader collective as well as those of particular groups; and that laws that affect older adults and persons with disabilities will also have implications, sometimes very significant ones, for others and that these implications must be taken into account.
In designing laws related to legal capacity and decision-making, there are two groups of stakeholders beyond those most directly affected whose needs must be given particular consideration. One group is family members and others who take on the responsibility of assisting with decision-making needs. The other group consists of institutions and individuals who enter into contractual or other legal arrangements with persons with impaired decision-making abilities, most prominently the third party service providers who are expected to effectively implement any legislation. While laws related to legal capacity must respect the rights of older persons and persons with disabilities and advance their substantive equality, they must also take into account the valid needs of these other groups.
It is important to recognize that family members, for the most part, take on their responsibilities to other family members willingly and out of love, that they find their roles meaningful, and that their relationships with the loved ones that they assist are reciprocal and interdependent. Persons who are unable to make decisions independently are not merely care recipients and those who provide assistance with decision-making are not simply care providers: those who receive support may also provide it in different ways, and vice versa. It is also important to acknowledge that those acting as substitute decision-makers or otherwise providing informal assistance to meet such needs are carrying out a resource-intensive and challenging role that may have significant economic, emotional and personal costs. They often feel that they receive little financial or practical support in these roles. They may not feel that they have the resources or skills for this role, but may take it on because they see no other alternative.
Most family members participating in the consultations acknowledged the importance of meaningful checks and balances to prevent and address abuse. Many commented, particularly in relation to adult children with disabilities affecting their decision-making abilities, that “I am not going to live forever”: recognizing that they would not always be around to carry out responsibilities appropriately and to prevent abuse, they understand the need for effective mechanisms to prevent abuse or misuse of powers by whoever ultimately steps into their role. However, they also emphasized that families could not reasonably be expected to take on too much more in the way of costs, paperwork and administration given the already considerable burdens and responsibilities that they carry.
Third party service providers often emphasized that they also have needs that must be considered in the design of these laws, particularly since they are to a significant degree responsible for its implementation. Service providers such as financial institutions, long-term care homes and developmental services providers are subject to extensive and often complicated regulation and oversight: these are not the only laws with which they must comply, and it is important that legal capacity and decision-making laws take into account these other obligations. Issues related to legal capacity and decision-making may fall outside the core areas of expertise of front line service providers, especially in financial institutions: yet they are by necessity taking on very challenging ethical, social and interpersonal issues, and risking liability in doing so. Health and social service providers in particular are often operating in situations of considerable time and resource pressure. Many service providers described themselves as stepping into a gap to provide vital services or supports that appeared to be beyond their understanding of their own roles and expertise, simply because there appeared to be no other mechanism to fill the need. Many service providers emphasized the need for greater clarity and certainty in law and policy, to ease their ability to effectively comply and fill their roles; several argued for clearer limitations on their responsibilities and liability in this area.
E. Realizing the Principles in the Context of this Area of the Law
1. Interpreting and Applying the Law in the Context of the Principles
The principles should be considered in the design of the law and of the policies and practices through which it is implemented. The law as designed should at minimum not be in direct contradiction of the principles and the law should protect against interference with the attainment of the principles by individuals. Ideally, the law promotes the fulfillment of the principles for individuals directly affected. The question of the consistency of the current law or of particular options for reform with the principles will be considered throughout this Interim Report.
Even where the law as drafted is consistent with the principles, there may be challenges in its interpretation or application. The understandings and attitudes of individuals or organizations who apply the law day-to-day may not be consistent with those which underlie the legislation. This is particularly so because legal capacity, decision-making and guardianship law is deeply embedded in existing attitudes, contexts and institutions surrounding persons with disabilities and older persons. For example, the strong tendency towards paternalism with respect to older persons and persons with disabilities may consciously or unconsciously affect assessments of capacity or how substitute decision-making powers are exercised.
For this reason, it is important to be very clear about the purposes of the legislation and about the particular functions exercised under the law, such as assessments of capacity and substitute decision-making. For example, the LCO has heard that assessments of capacity may be triggered for a wide range of reasons that are not consistent with more limited focus of this legislation on legal capacity and decision-making. There are widespread concerns that the SDA is being misused as a mechanism for estate planning, so that substitute decision-makers are using their powers, not to respect the life goals of the individual affected or to improve their quality of life, but to reduce probate fees, preserve assets for distribution upon death, and manage tax implications. It was noticeable to the LCO during consultations that some service providers tend to confuse Ontario’s legal capacity, decision-making and guardianship legislation with adult protection legislation, which Ontario does not have, and may be attempting to apply the legal capacity and decision-making laws to implement goals which are not part of its intent. These types of misunderstandings or misuses distort the law and ultimately have a negative effect on those individuals who are intended to be the focus of the legislation. It is, in the view of the LCO, not appropriate and likely not effective to attempt to use this area of the law as a tool to resolve broader social or legal issues: legal capacity and decision-making laws are “high stakes” in their impact on the rights and wellbeing of those affected and their use should be carefully confined to what is truly necessary.
One means of providing greater clarity may be to include in the legislation a statement of purposes. The HCCA already includes such a provision in section 1:
The purposes of this Act are,
(a) to provide rules with respect to consent to treatment that apply consistently in all settings;
(b) to facilitate treatment, admission to care facilities, and personal assistance services, for persons lacking the capacity to make decisions about such matters;
(c) to enhance the autonomy of persons for whom treatment is proposed, persons for whom admission to a care facility is proposed and persons who are to receive personal assistance services by,
(i) allowing those who have been found to be incapable to apply to a tribunal for a review of the finding,
(ii) allowing incapable persons to request that a representative of their choice be appointed by the tribunal for the purpose of making decisions on their behalf concerning treatment, admission to a care facility or personal assistance services, and
(iii) requiring that wishes with respect to treatment, admission to a care facility or personal assistance services, expressed by persons while capable and after attaining 16 years of age, be adhered to;
(d) to promote communication and understanding between health practitioners and their patients or clients;
(e) to ensure a significant role for supportive family members when a person lacks the capacity to make a decision about a treatment, admission to a care facility or a personal assistance service; and
(f) to permit intervention by the Public Guardian and Trustee only as a last resort in decisions on behalf of incapable persons concerning treatment, admission to a care facility or personal assistance services.
Another approach, adopted in the Yukon’s Adult Protection and Decision-making Act, is to specify purposes for particular aspects of the legislation, such as adult protection, guardianship, supported decision-making arrangements or representation agreements. For example, the statute specifies the purpose of supported decision-making agreements as follows:
4 The purpose of this Part is
(a) to enable trusted friends and relatives to help adults who do not need guardianship and are substantially able to manage their affairs, but whose ability to make or communicate decisions with respect to some or all of those affairs is impaired;
(b) to give persons providing support to adults under paragraph (a) legal status to be with the adult and participate in discussions with others when the adult is making decisions attempting to obtain information.
The LCO has recommended, in a number of specific areas, statutory amendments to clarify the purpose of the legislation, to reduce the problems arising from these common misapprehensions. The LCO believes that it may also be valuable to include in the Substitute Decisions Act, 1992 a statement as to its general purposes, with the aim of clarifying that this legislation is intended to serve the following functions:
· provide for decision-making for persons who lack legal capacity and require decisions to be made;
· to do so in a manner that:
o is the least restrictive appropriate in the circumstances of the individual,
o is respectful of the values, culture, religious beliefs, and life goals of the individual,
o is respectful of the dignity of the individual,
o encourages their participation in decision-making to the greatest extent possible, and
o includes safeguards against abuse or misuse of those decision-making powers;
· provide procedural protections for individuals whose legal capacity is lacking or in doubt; and
· to provide clarity regarding the roles and responsibilities of substitute decision-makers.
Many jurisdictions have included, as part of the modernization of their legal capacity, decision-making and guardianship legislation, statements of principle to guide the interpretation and application of the legislation. This includes the provinces of Alberta, Saskatchewan, Yukon Territory (that is, most of the Canadian jurisdictions that have recently reformed their laws in this area), the influential Mental Capacity Act, 2005 of England and Wales, and Ireland’s proposed legislation. The Victorian Law Reform Commission, in recommending the inclusion of a principles section in reformed legislation, commented,
Modern legislation often starts with a statement of principles. These principles serve two broad purposes: they provide parliament with an opportunity to highlight policies that the legislation seeks to apply and they provide guidance to those who exercise power under the legislation.
Because of the challenges in balancing, and sometimes prioritising between, the fundamental values of autonomy and beneficence, guardianship legislation should include principles that clearly explain the policies implemented by the law. Those principles would also guide people—such as tribunal members, the Public Advocate, State Trustees, and guardians and administrators—when applying that legislation and exercising power over the lives of others.
Legislative statements of principles may in some cases have a powerful effect: for example, some consultees have pointed to the statement in Ontario’s Long-Term Care Homes Act, 2007 that the fundamental principle underpinning that statute is that “a long-term care home is primarily the home of its residents and is to be operated so that it is a place where they may live with dignity and in security, safety and comfort and have their physical, psychological, social, spiritual and cultural needs adequately met”, as having contributed to a fundamental shift in the approach to that area of the law.
The statements of interpretive principles in various jurisdictions differ, depending on the structure and scope of the legislation, as well as that jurisdiction’s approach to that area of the law. Some of the concepts included as principles in other legislation or proposed legislation are in Ontario already incorporated into the substance of the statute; others are not. Principles commonly included in these other jurisdictions include:
· individuals are to be presumed capable until the contrary is demonstrated;
· the means by which an individual communicates should not affect a determination of capacity;
· where a person is not able to make decisions independently, the person’s autonomy should be preserved by choosing the least intrusive and least restrictive course of action available;
· individuals are entitled to choose the manner in which they live and to accept or refuse support or protection, so long as they have the capacity to make decisions about these matters and do not harm others;
· individuals are entitled to be informed about and to the best of their ability to participate in decisions affecting them;
· a person should not be treated as unable to make a decision unless all practicable steps have been taken to help him or her do so, without success; and
· an act done or decision made for or on behalf of a person who lacks capacity must be made in her or his best interests, which includes not only the quality of life of the individual, but the furtherance of the individual’s values, beliefs and wishes.
The LCO believes that a principles provision could be of assistance in the application of reformed legislation. A principles section should draw upon the Framework principles, be focused within the scope of the legislation, rather than broad aspirational statements, and on providing clarity as to interpretation, rather than identifying duties and responsibilities that would be better incorporated directly into the statute.
DRAFT RECOMMENDATION 1: The Ontario Government include in reformed legal capacity, decision-making and guardianship laws provisions that are informed by the principles contained in the LCO Frameworks and which set out
a) the purposes of the legislation; and
b) the principles to guide interpretation of the legislation.
2. Progressive Realization
The LCO Frameworks incorporate the concept of progressive realization, the recognition that the fulfilment of the principles of substantive equality is an ongoing process, as resources, circumstances and understandings develop. As the Final Report accompanying the Framework for the Law as It Affects Older Adults states,
[O]ne must recognize that even where one would aspire to implement all the principles to the fullest extent possible, there may be other constraints that might limit the ability of law and policy makers to do so. These constraints may include policy priorities or funding limitations among others. That is, it may be necessary to take a progressive realization approach to the full implementation of the principles. A progressive realization approach involves concrete, deliberate and targeted steps implemented within a relatively short period of time with a view to ultimately meeting the goal of full implementation of the principles.
Recommendations must respect and advance the principles, principles must be realized to the greatest extent possible at the current time, and there must be a focus on continuous advancement.
As is discussed at length in Chapter VI, there is a strong desire in some communities to find alternatives to substitute decision-making that will better promote the autonomy of affected individuals. Some of these alternatives, referred to by some as “supported decision-making”, involve novel approaches to the law, potentially involving significant reworking of current understandings and raising wide ranging and challenging practical and ethical issues. A progressive realization approach to alternatives to substitute decision-making may allow for new approaches to be explored while avoiding widespread implementation issues or undue risks to individuals who are vulnerable or at risk.
During consultations, many stakeholders identified resource pressures as a concern affecting the appropriate implementation of laws and policies in this area. Pressures on the health, long-term care and social service sectors may distort the ways in which laws and policies are implemented. As one interviewee from the long-term care setting identified, effectively assessing legal capacity to make decisions, providing information about laws and rights, identifying supports to assist an individual with decision-making – all of these take time to execute properly, and time is often just what professionals in these areas lack.
Fiscal constraints at the provincial level may make it more difficult to allocate significant resources for new programs, policies or institutions to meet the priorities for reform. The LCO is well aware of the need for fiscal prudence and the importance of ensuring best value for resources allocated, and has carefully assessed potential recommendations for reform in this light.
However, the LCO is also well aware that this area of the law has a fundamental impact on the rights and wellbeing of many Ontario residents, and that it is crucial that the law respect those rights and support wellbeing. Where new structures or supports are necessary in order for the fundamental rights of Ontarians to be effectively respected, the LCO has recommended the creation of such structures and supports for government consideration as it determines the allocation of resources on an ongoing basis.
The LCO has therefore aimed to identify reforms that can serve as the foundation for further advancement in this area as resources are available and understandings develop, in the same way that the reforms to this area of the law in the 1990s provided a significant advance over what came before, and provided a solid basis for further improvements.
Recognizing the limitations of the current situation, the LCO has also indicated in Chapter XII priorities for reform, balancing out the impact that proposed reforms may have on advancing the rights and wellbeing of affected groups with the costs and practical challenges of implementing them. As well, Appendix B proposes timeframes for the implementation of the draft recommendations, recognizing that while some draft recommendations could be implemented in the short-term, others involve greater complexity or investment of resources.
The LCO has also indicated at various points in the text, where government is unable to undertake in the short-term reforms that the LCO has assessed as the most desirable, steps that may be taken in the alternative or in the short-term to make some incremental improvement prior to more thorough reform.
Acknowledging the challenges posed by the implementation gap, and the necessity of a progressive realization approach highlights the importance of actively monitoring the outcome of reforms to law, policy and practice. The Frameworks recommend that law and policy-makers regularly review laws to determine whether their goals are still meaningful and relevant, and whether their aims are being achieved; and if the law was crafted as a partial response to an issue due to constraints, whether progress is being made towards better fulfilment of the principles. The Frameworks include a number of questions related to monitoring of the law, including the following:
1. What mechanisms does the law include to allow those affected, including persons with disabilities (or older adults), to provide feedback on the effectiveness of the law and on any unanticipated negative consequences for persons with disabilities (or older adults)?
2. How does the law require meaningful information about its impact and effectiveness to be systematically gathered and documented?
3. How does the law require that information about its operation and effectiveness be made publicly available?
4. How does the law ensure that those charged with implementing and overseeing the law regularly report on their activities and the effectiveness with which the law, program or policy is administered?
5. Where the law provides significant discretion to those charged with its implementation, what additional reporting and monitoring mechanisms does it include to ensure that this discretion is exercised consistently, fairly, transparently and in a principled manner?
One of the challenges in law reform in this area, referenced throughout this Interim Report, is the lack of relevant and worthwhile data about many key aspects of these laws, including assessments of capacity, the operation of powers of attorney (POAs), or even the delivery of education and information. Without such data, it is difficult to meaningfully assess whether the reforms of the 1990s have met their goals; or whether any shortfalls in doing so are the result of faulty assumptions and strategies underlying the laws or with their implementation.
An approach that enables active monitoring and collection of data regarding the impact of legislation and public policy is in harmony with the current emphasis in government on evidence-based policy, an approach that aims to employ “the best available objective evidence from research to identify and understand issues so that policies can be crafted by decision makers that will deliver desired outcomes effectively, with a minimal margin of error and reduced risk of unintended consequences”. A commitment to monitoring entails also a commitment to identifying, pursuing and evaluating the best available evidence as a basis for creating and assessing law reform initiatives. That is, “enhancing the information basis of policy decisions will improve the results flowing from implementation, while iterative monitoring and evaluation of results in the field will allow errors to be caught and corrected”.
Given the significant impact of these laws on fundamental rights, the challenges inherent in their implementation, and the progressive realization approach recommended here, the LCO believes that, should government implement significant reforms, these should be accompanied by a strategy for monitoring the effect of these reforms. Such a strategy may take a variety of forms. For example, both the Accessibility for Ontarians with Disabilities Act and Human Rights Code Amendment Act contain provisions requiring a review after a certain period of time of the reforms they enacted. Section 57 of the Human Rights Code Amendment Act required a review of the implementation and effectiveness of the changes resulting from the enactment of that statute, three years after the effective date, including public consultations, and a report to the responsible Minister. This review was completed in 2012. The Accessibility for Ontarians with Disabilities Act contains more comprehensive review requirements. A first review was required within four years of the coming into force of the AODA, with further reviews to take place every three years. The Lieutenant Governor, after consultation with the Minister, must appoint a person to undertake a “comprehensive review of the effectiveness of th[e] Act and the regulations”, including public consultation. The person appointed must submit a report on that review that may include recommendations for improving the effectiveness of the Act and regulations. Simpler forms of monitoring may take the form of examining and strengthening existing mechanisms for gathering data about the system, including as volumes of complaints or calls to the various government agencies that apply the law or oversight mechanisms under related legislation such as the Long-Term Care Homes Act, 2007. The determination of the appropriate form and timing of a monitoring strategy depends on the nature and extent of any reforms that government determines to undertake; however, the institution of an appropriate monitoring mechanism is an important element of effective reform in this area.
DRAFT RECOMMENDATION 2: The Ontario Government accompany reforms to legal capacity, decision-making and guardianship law with a strategy for reviewing the effect of the reforms, within a designated period of time.
The principles, considerations and approaches developed through the LCO’s Frameworks for the law as it affects older adults and the law as it affects persons with disabilities form the foundation of the LCO’s approach to the reform of legal capacity, decision-making and guardianship law. In analyzing issues and considering proposals for reform, the project has focused on substantive equality for persons with disabilities and older adults, and whether current law and proposals for reform comply with or contribute to the principles that promote such equality. The LCO believes that the principles identified in the Frameworks, together with a nuanced understanding of the individuals directly affected by this area of the law, should underlie the purposes and principles of Ontario’s legal capacity, decision-making and guardianship laws.
At the same time, the LCO recognizes that principles are, by their nature, aspirational, and that law, and law reform, must grapple with practical realities, including competing needs, evolving understandings, and constrained resources. The principles assist us in identifying the ultimate goals of the law: in some situations, there may be steps along the way to the realization of those ultimate goals. The LCO has aimed to identify reforms that are both practical and contribute to the realization of the principles. Some reforms may take longer to put into place than others. It is important, however, to always keep in view the ultimate goals of reform: to this purpose, active monitoring of the effects of reform in this area is a vital element of the LCO’s proposals.
This Chapter set out the core elements of the LCO’s approach to applying the Frameworks to this area of the law, including a general analysis of the principles, some of the relevant circumstances of the different communities of persons with disabilities and older persons affected by these laws, and the impact of progressive realization on the development and implementation of recommendations for reform. In each of the following Chapters, these core elements are more specifically applied to the particular issues considered in that section.
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