A. Disability
We are guided in this paper by the description of disability articulated in Article 1 of the CRPD:
Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.
As Michael Stein and Janet Lord note, the CRPD does not directly define the term ‘disability’: “[i]nstead, Article 1 of the Preamble affirms the social construction of disability in which limitations arise from a person’s interaction with environmental barriers rather than as the consequence of an individualized impairment.”[18] This approach reflects a social and human rights model of disability.[19] The model recognizes that it is society’s failure to accommodate the needs of people with disabilities which give rise to the ‘disabling disadvantage’ that people with disabilities encounter in their daily lives, not some inherent mental, sensory or physical condition.[20]
We define the terms ‘intellectual,’ ‘cognitive,’ and ‘psychosocial’ disability as follows. An intellectual disability generally means having greater difficulty than most people with intellectual and adaptive functioning due to a long-term condition that is present at birth or before the age of eighteen. People with this label may have greater difficulty in carrying out everyday activities such as communicating and interacting with others, managing money, doing household activities and attending to personal care. While the term ‘intellectual disability’ is technically distinct from other ‘developmental disabilities’ these terms are often used interchangeably. Cognitive disability refers to similar kinds of difficulties, usually with later onset than age eighteen but which may result from brain injury at an earlier age. People with cognitive disabilities include those who have experienced stroke, dementias or Alzheimer’s disease, and older adults who experience other forms of cognitive decline as they age. People with psychosocial disabilities are those who experience mental health issues, and/or who identify as ‘mental health consumers’, ‘psychiatric survivors,’ or ‘mad.’ These are not mutually exclusive groups. Many people with intellectual or cognitive disabilities, as well as older adults also identify or are identified as having psychosocial disabilities.
B. Legal Capacity and Incapacity
Throughout this paper we refer to the right to ‘legal capacity.’ We also refer to ‘capacity’ laws in Canada, which generally define the cognitive requisites considered necessary for individuals to be recognized as able to exercise legal capacity. In later sections of the paper, to avoid confusion, when we refer to ‘capacity’ as it is defined and used in Canadian law, we sometimes use the convention of placing the term ‘mental’ in front of it in square brackets in order to clarify that our reference to the term is with respect to its usage in law as a descriptor of individual mental/cognitive characteristics considered necessary to exercise legal capacity. Thus, we refer to the right to legal capacity and to criteria of [mental] capacity in Canadian law.
We also refer to ‘legal capacity law’ in Canada, rather than simply to ‘capacity law’ as is the usual case, to clarify that [mental] capacity laws in Canada effectively regulate and allocate the recognition of the right to legal capacity on the basis of certain mental criteria like the ability to understand information and appreciate consequences of a decision.
The term ‘legal capacity’ has a particular meaning in the context of international Conventions and is contained in the Convention on the Elimination of All forms of Discrimination against Women[21] (CEDAW) as well as in the CRPD.[22] It is generally understood in these Conventions as referring to people’s capacity to have rights, and to have the capacity to act on those rights on an equal basis with others without discrimination on the basis of gender or disability. Legal capacity in this sense is a recognized status.
A legal opinion of the International Disability Alliance (“Legal Opinion”) on the article of the CRPD that addresses legal capacity[23] describes legal capacity as consisting of two components: “the capacity to hold a right and the capacity to act and exercise the right…”.[24] International human rights law constructs legal capacity to include both of these elements. [25] With respect to exercising the right to individual autonomy, which is the focus of this paper, the right to legal capacity means, for example, choosing where and with whom you wish to live, and most importantly, having those choices respected. The concept is relevant to all areas of an individual’s life, including the exercise of legal capacity to enter a contact, to marry, to vote, to deal with property and to make personal life, personal care and health care decisions.
However, this term is not often found in Canadian law. The term ‘capacity’ is much more frequently used in Canadian legislation[26] and is commonly, but not always, defined to refer to an ability to understand information relevant to making a decision and an ability to appreciate the reasonably foreseeable consequences of a decision or lack of decision. In this sense, ‘capacity’ refers to the cognitive requisites considered necessary for exercising one’s right to legal capacity, and having it respected by others.
The term ‘legal capacity’ is not absent from Canadian legal discourse, and is used in the Law Society of Upper Canada’s Rules of Professional Conduct[27] in relation to the concept of having legal capacity to instruct counsel, and also in Ontario’s Human Rights Code, which guarantees to every person having legal capacity a right to contract on equal terms without discrimination.[28] However, the framing of the provision in the Human Rights Code appears to rest on the traditional assumptions of capacity law that some persons are without legal capacity. We challenge this assumption in this paper in light of the CRPD.
The concept of legal capacity is significant because it represents a shift in the understanding that many members of the legal community have attributed to it. A common understanding of legal capacity law in Canada views it in relation to a person’s cognitive functioning. For example, in relation to Ontario’s Substitute Decisions Act (SDA), the Office of the Public Guardian and Trustee’s “Guidelines for Conducting Assessments of Capacity” states the following:
In its legislation, the Government of Ontario has codified the belief that mental capacity is, at its core, a cognitive function. The SDA operationally defines capacity as the ability to understand information relevant to making a decision and appreciate the reasonably foreseeable consequences of a decision or lack of decision. [29]
Thus, having the status of being considered legally capable is determined based on a person’s own ability to understand information and assess consequences of making a decision. Legal capacity, in this sense, is attached to the attributes of a person. In contrast, legal capacity as it is used in the Convention on the Elimination of All forms of Discrimination against Women and the CRPD is a social and legal status accorded independent of a person’s particular capabilities.
The Legal Opinion illustrates this crucial aspect of legal capacity in its description of what legal capacity means for people who do not have disabilities, as follows:
A non-disabled citizen who owns real estate, or a car, a horse or a book is entitled to sell the house, to hire the car, gift the horse or lend the book. All these and similar dispositions as an owner are a part of his or her legal capacity. [30]
Defined in this way, legal capacity does not reflect an individual’s ability to make decisions. Rather, it reflects an individual’s right to make decisions and have those decisions respected, and signals a social model approach to defining and understanding disability. As such, a social model approach to defining legal capacity focuses not on the individual’s attributes or relative limitations, but rather on the social, economic and legal barriers a person faces in formulating and executing individual decisions, and the supports and accommodations they may require given their particular decision-making abilities.
Across jurisdictions there are a wide variety of laws regulating legal capacity, and tests employed to determine requisite mental capacity. In fact, it has been stated that “[t]here are as many different operational definitions of mental (in)capacity as there are jurisdictions.”[31] A review of these situates the current test employed in Canada.
Amita Dhanda describes three categories for the attribution of incapacity for people with disabilities as follows:[32]
· status attribution: presumes that a person with a specific type of disability lacks legal capacity. This results in formulations where a person with a specific type of disability is prohibited from performing a specific legal task.
· outcome test: capacity determinations are based on an evaluation of the decision made.
· functional test: legal capacity determinations are based on a person’s ability to perform a specified function, such as understanding the nature of a contract.[33]
Increasingly, the first two approaches to regulating legal capacity have been brought into question internationally and successfully challenged in the courts. More recent statutory reform efforts (in the Republic of Ireland and elsewhere) have focused on the functional test of decision making capacity. A ‘functional’ approach to regulating legal capacity is increasingly recognized in both statutory law and jurisprudence and challenges the predominant status and outcome approaches. Canada’s laws, too, are most consistent with the functional approach.
The importance of the functional approach for people with disabilities has been described as follows:
This approach is in the ascendant mainly because it is closer to human rights values and law, favouring a “tailor-made” approach to determining capacity. With this approach there is still a need to guard against paternalistic assumptions which may distort objective assessments of functional capacity.[34]
However, the International Disability Alliance (IDA) has recently challenged the functional test for legal capacity on the basis that its application constitutes discrimination in exercising the right to legal capacity on an equal basis with others.[35] Instead, the IDA argues that disability should be recognized as “functional diversity” and that in the exercise of legal capacity the focus must be on providing supports and accommodations. The Alliance argues that the right to make decisions according to one’s “will and preferences” can never be restricted on the basis of functional diversity or disability. We propose the concept of ‘decision-making capability’ below, as a way to conceptually integrate recognition of the functional diversity of individuals with an understanding of the array of supports and accommodations a person might need to enjoy and exercise their legal capacity.
In Part Two, Section III F. we propose a ‘functional assessment’ of decision-making capability where there are disputes about the ways in which a person can exercise their legal capacity. We believe that disputes will inevitably arise about whether a person can exercise their capacity legally independently – i.e. on the basis that they understand and appreciate the nature and consequences of a decision – or whether they can more appropriately exercise their legal capacity through supported decision making. We outline in Part Two, Section III why we think such distinctions are necessary, and how they can be made without discrimination in the exercise of legal capacity on the basis of disability. The challenge is to find a way for any person to claim their legal independence from others, who may counter that they need ‘supports’ to assist them in making decisions; while at the same time protecting from discrimination on the basis of disability those who do, in fact, need supports to make decisions and enter agreements with others.
C. Decision-making ‘Ability,’ ‘Supports,’ ‘Capability’ and ‘Status’
We distinguish in this paper between ‘decision-making ability,’ ‘decision-making supports’, ‘decision-making capability’ and ‘decision-making status.’ We also use the term ‘individual’ decisions and decision-making to refer generally to the range of personal and property decisions that persons of majority age wish to make and control with respect to personal care/life decisions, health care decisions, and property decisions.
We refer to ‘decision-making capability’ in this paper rather than ‘capacity’ for conceptual reasons discussed below, but also because alternative terms like decision-making ‘capacity’ or ‘mental capacity’ seem so often confused with the concept of ‘legal capacity’ as discussed above. Decision-making capability is a core concept in the legal framework we propose. We use ‘capability’ in the very specific sense that Amartya Sen[36] has formulated the term as the basis for providing a more substantive approach to equality of recognition of the right to legal capacity than strictly formal theories of equality allow (i.e. treating likes [including those as defined by mental capacity] alike). We propose how Sen’s ‘capabilities approach’ could be applied to ensuring equality of recognition in legal capacity in Part Two, Section I.D. below.
To introduce the notion here, ‘capabilities’ in Sen’s formulation are not individual abilities or capacities exclusively. Capabilities are ‘capabilities to function’ where function refers to the getting of things done, or making things happen that are important to individuals and communities. Sen keeps the list of valued ‘functionings’ open to debate and dialogue. We suggest that ‘individual decision making’ or getting individual decisions made consistent with one’s will and/or intention is a function that would clearly fall into Sen’s framework given the centrality of this function to basic human rights and goods. ‘Capabilities’ for the function of individual decision making are a combination of what we refer to as individual decision-making ‘abilities’ and of decision-making ‘supports’ and accommodations.
In this paper we argue for a very inclusive definitional framework of individual decision-making abilities considered requisite for recognizing decision-making capability and legal capacity. This includes the abilities to understand information and appreciate the nature and consequences of a decision, but can also include, at a minimum, the capacity to express one’s intention or will in ways that at least one other person can reasonably describe as meaningful. That people have different decision-making abilities should not in and of itself be determinative of recognition of their legal capacity. Different decision-making abilities can be turned into decision-making capabilities with appropriate decision-making supports and accommodations sufficient to exercise legal capacity.
Drawing on Sen’s framework, decision-making supports are the ‘inputs’ that help constitute capability – decision-making capability in this case. Needed decision-making supports can take a variety of forms including, for example, plain language and other communicational supports, life planning supports to assist a person in thinking about options for their living and other arrangements, and support individuals who assist in representing a person to others, etc. Together with a person’s particular decision-making abilities, these kinds of supports help constitute their capability to make decisions in relation to others.
We discuss these decision-making supports in more detail in later sections. Other parties in decision-making processes must also reasonably accommodate people’s particular decision-making abilities to enable them to act legally independently in making decisions and entering agreements with others, in part by enabling provision of decision-making supports in the decision-making process. As we also discuss below, such supports and accommodations are required under the CRPD. States Parties must take steps to ensure they are provided in order to be in compliance with the CRPD.
We believe this approach to defining decision-making capability moves beyond the ableist assumptions of capacity law as it now stands in Canada. It recognizes the centrality of disability-related supports and accommodations to exercising human rights – like the right to legal capacity – in a way that can ensure substantive equality of recognition as required under Article 12 of the CRPD.
Recognizing different constitutions of decision-making capability, depending on the particular mix of a person’s abilities and supports needed, requires that we also recognize that people enjoy and exercise their legal capacity through different ‘decision-making statuses.’ For example, people who have the ability, on their own, to understand information and appreciate the nature and consequences of a decision, and can communicate that to third parties, are recognized as able to exercise their legal capacity in what we term a ‘legally independent decision-making status.’ Whereas traditional capacity law recognizes this ability as the exclusive, or only, criterion for exercising legal capacity, we suggest it is one set of abilities and associated status.
Where people do not have the requisite decision-making abilities on their own to understand information and appreciate the nature and consequences of a decision, even with accommodations and supports, we propose in this paper that they should retain their full legal capacity where decision-making can be managed through a ‘supported decision making status.’ This involves a trusted individual or network of individuals assisting the individual in decision making. Support can be provided in a variety of ways including interpretation and plain language support, as well as assistance in representing the person to others who may not understand his or her ways of communicating. Effectively, supported decision making distributes decision-making abilities required for competent decision-making processes across an individual and his/her supporters, as directed by the individual’s will and/or intention, and thus results in individual’s decision-making capability in the sense defined above.
Finally, we recognize that there will always be individuals who, for at least some period of time, will not be able to be sufficiently supported or accommodated by others to fully exercise their legal capacity. If their decision-making abilities are entirely non-evident to any others who could assist them in decision making, then supports and accommodations cannot be provided to enhance those abilities and constitute decision-making capability. We suggest in this paper that a temporary ‘facilitated’ decision-making legal status be established for individuals in this situation while personal relationships can be built that would enable the person’s will and/or intention to become known by others as the basis for decision making.
We see no necessary discriminatory effect in recognizing that people have varying decision-making abilities – i.e. varying abilities to, on their own or with assistance, understand information and appreciate the nature and consequences of a decision, or communicate their will and/or intention to others. What is essential is that fair and just arrangements are in place to determine the nature of a person’s decision-making abilities and their particular needs for decision-making supports and accommodations. However, such determinations should not be undertaken as a matter of course simply because a person is presumed to have a disability. They are only required if a person’s decision-making capability (their abilities plus any existing supports and accommodations) is reasonably questioned by other parties as sufficient to exercise their legal capacity with respect to a particular decision-making transaction. And, when required, the assessment of ability is undertaken only for the purpose of determining appropriate supports and accommodations.
Just as assessment of specific functional abilities are recognized as integral to the reasonable accommodation process to ensure non-discrimination on the basis of disability in employment practices, this too should be the case with respect to ensuring non-discrimination in the exercise of legal capacity. Assessment of individual decision-making abilities may be required in order to ensure that appropriate supports and accommodations are provided to maximize a person’s decision-making capability and thus the enjoyment and exercise of their legal capacity. It is in this manner that we argue that a substantive ‘equality of recognition’ of legal capacity can be secured.
We are aware that in using the term decision-making ‘ability’ as only one element of decision-making ‘capability’ we are shifting the terms usually associated with the standard ‘understand and appreciate’ test which we discuss in more detail later in this paper. For instance, the Supreme Court of Canada’s decision in Starson v. Swayze in 2003, [37] interpreted the statutory test for mental capacity in Ontario’s Health Care Consent Act[38] to have a relatively low threshold of decision-making ability. This decision was perceived by many in the disability rights community to significantly advance autonomy interests of people with psycho-social disabilities. Monique Dull has recently examined a number of lower court cases since the Supreme Court decision which interpret the threshold.[39] What is at stake in these interpretations of the threshold is the meaning of the term ‘ability’ or ‘to be able’ to understand and appreciate. Dull suggests that the statutory test’s “focus on ability theoretically allows more patients to pass the test. Failure to understand or appreciate information the first time due to slower learning, poor teaching, or other barriers can be accommodated by different methods of explanation.”[40] Her analysis of the trend since 2003, however, points to a reversal of a broader interpretation to a higher and more restrictive threshold.
While the term ‘ability’ may allow for some plasticity in interpretation, our view is that it is helpful conceptually to make explicit that in addition to decision-making ability, the need and provision of supports and accommodation must be central to any analysis. It is for this reason that we take an ‘additive’ approach in conceptualization: ability + supports and accommodations = decision-making capability.
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