Enshrining service rights for people with intellectual disabilities in legislation is a vital step in transforming the developmental services sector. However rights alone are not enough. People with disabilities must have appropriate tools to enable them to enforce those rights. In this section we describe a human rights-based approach to enforcement mechanisms in the developmental services sector. A human rights-based (“HRB”) approach provides a theoretical framework and practical guidance for establishing enforcement mechanisms in the developmental services sector. An HRB approach is predicated on the existence of rights, but goes beyond merely enshrining rights in legislation or policy. An HRB approach focuses on human rights principles and uses those principles to guide the development and implementation of systems, programs and mechanisms. This section begins with a discussion of the transformative potential that an HRB approach offers. Next we outline various legal sources for this approach, and conclude by proposing four principles of an HRB approach to developing enforcement mechanisms.
A. Why a Human Rights-based Approach?
A human rights approach to disability is empowering. Unlike approaches that view disability as a form of individual pathology, a human rights approach views disability as “normal” variations in the human condition, and posits that disabling experiences exist when social and environmental conditions fail to include these inherent variations. An HRB approach insists that people with disabilities, like all others, are entitled to enjoy all human rights. As a result, governments must take measures to create inclusive societies in which people with disabilities are welcomed, accommodated, and enabled to live as full citizens.[66]
An HRB approach enables people with disabilities to conceive of themselves as rights-bearers, and positions them as active claimants of rights in relation to government and service providers. According to Christopher Jochnick:
The real potential of human rights lies in its ability to change the way people perceive themselves vis-à-vis the government and other actors. A rights framework provides a mechanism for reanalyzing and renaming ‘problems’ as ‘violations’, and, as such, something that need not and should not be tolerated.[67]
An HRB approach treats people not as passive recipients of goods and services but as active participants in services that affect their well-being. As participants in the developmental services sector, people with disabilities are entitled to voice their concerns and hold service providers accountable when their rights are not respected. Alicia Ely Yamin notes that:
…what a rights-based approach… uniquely adds…lies precisely in the definition of relationships between rights-holders and duty-bearers, which permits the creation of a framework for and mechanisms of accountability, including effective recourse in the event of violations.[68]
Adopting such an approach has significant implications, both philosophically and practically.[69] Philosophically, an HRB approach can address the history of segregation, abuse, discrimination and oppression that people with intellectual disabilities have suffered, in part, because they were seen as passive, in need of care, and in need of others to determine their best interests. As Thomas Pogge has stated, by adopting a human rights approach those who are disadvantaged will no longer be seen as “shrunken wretches begging for our help”, but rather as “persons with dignity who are claiming what is theirs by right.”[70] In a human rights framework fundamental rights and protections are provided without qualification or exception, on the basis of universal human dignity and entitlement to equality. It is this universal, non-judgmental aspect of an HRB approach that is particularly responsive to the historical segregation, social isolation and lack of self-determination that has characterized services for people with intellectual disabilities.[71]
Practically, adopting an HRB approach can lead to changes in the nature of the roles and relationships that various actors play within the service delivery system. Under the Social Inclusion Act people with disabilities are generally viewed as passive recipients of services. The Act assigns very few roles or responsibilities to people with disabilities, other than some limited decision-making roles, the majority of which can be removed from the person and performed by others. As discussed earlier, service rights for people with disabilities are absent altogether from the Act. In contrast, the Act assigns large and important roles and responsibilities to service providers to ensure that minimum standards and quality assurance mechanisms are in place. The service delivery system envisioned by the legislation is, therefore, largely a relationship between government and service providers. People with disabilities are not part of this system, except to the extent that they receive services. In contrast, an HRB approach orients people with disabilities as bearers of rights who necessarily are active participants in the system of services and supports delivered by government and service providers. One way in which people with disabilities can become active participants in the developmental services system is by exercising and enforcing their service rights. Effective mechanisms of enforcement and redress are a hallmark of an HRB approach to services. Providing a means by which people can actively seek redress when their service rights are challenged is one way in which a developmental services system that is based on human rights principles can enable people with disabilities to participate in the service delivery system. Utilizing an HRB approach, people with disabilities can be transformed from passive recipients of services into active participants. This makes an HRB approach particularly relevant in the current context of transformation of Ontario’s developmental services system, as it can assist in shaping this transformation.
Under the Social Inclusion Act people with intellectual disabilities have very little control or power over funding decisions or the types and amount of services and supports to which they are entitled. This is another example of the passive, dependent role that people with disabilities occupy in the developmental services sector. According to Tanya D. Whitehead and Joseph B. Hughey, a service delivery system that maintains this passive role will not be able to truly improve the lives of people with intellectual disabilities:
… it is becoming clear that real choice means real options, control of the process of decision making, and control of the resources would move from the system’s control to the person’s control. If a shift in control of this type should occur, it would have profound implications for the relationship between support people, the organization of services and supports, and the people with disabilities who use those services on a day to day basis.[72]
A system that includes people with disabilities will ultimately deliver services that better meet the needs of recipients and will do so in a manner that is more accountable to them.
Another practical implication of adopting an HRB approach is that it can contribute to ensuring that services are designed and delivered in a manner that respects recipients’ rights. Services that do not pay attention to rights may unintentionally result in future rights violations.[73] For example, failing to respect a person’s capacity to make their own decisions regarding services by allowing a third party to make those decisions may lead to violations of the person’s right to privacy. Implementing an HRB approach ensures that there is a focus on respecting the rights of people with disabilities, contributing to safeguards that will prevent future rights violations.
Despite these promising philosophical and practical implications, critics of the HRB approach have asserted that for rights to positively impact the lives of people with disabilities, circumstances and supports must be in place to enable people with disabilities to be included in society. Damon A. Young and Ruth Quibell point out that such circumstance often do not exist, leaving many people with intellectual disabilities absent from community life and the promise of inclusion elusive.[74] Moreover, the onus to create inclusive circumstances and provide rights to people with disabilities often rests with government, advocates, guardians, parents and service providers. The promise of inclusion, therefore, depends on these actors to implement their commitments and responsibilities.[75]
Young and Quibell further point out that enforcement mechanisms that accompany rights tend to be engaged only after a rights violation has occurred. They assert that obtaining an after-the-fact remedy is not an effective basis for facilitating just outcomes. On the other hand, Terry Carney writes that the very services that are provided to people with intellectual disabilities, as well as the attitudes and beliefs of service providers, are key factors that contribute to the denial of rights. Therefore meaningful change can only occur if discriminatory and disempowering attitudes and beliefs are addressed in a proactive way, before rights violations occur.[76]
Other critics draw attention to the issue of rights education, noting that rights are useless if people are unable to understand them.[77] Moreover, enforcing one’s rights depends on individual agency and capacity. For people with disabilities who cannot exercise legal capacity, rights are ineffective as tools of empowerment.[78]
Rather than discounting the use of an HRB approach altogether, these critiques present important questions that must be considered when designing and implementing enforcement mechanisms in the developmental services sector. One of the goals of the provision of legislatively enshrined service rights and accompanying enforcement mechanisms is to imbue the developmental services sector with a culture of awareness and respect for the rights of people with disabilities. The importance of changing attitudes and beliefs of service providers points to the need for education about rights for these workers. Therefore, while the infusion of rights into this sector must be focused on people with disabilities, service providers, administrators, workers, family members and others who support people with disabilities must also be sensitized to rights issues. A culture of rights would address critiques concerning the need to change service providers’ attitudes and beliefs, and the after-the-fact nature of enforcement mechanisms.
Employing an HRB approach to developmental services is only one tool for improving the lives of people with intellectual disabilities. Critiques concerning the need for government and other actors to put in place inclusive circumstances and opportunities points to the importance of continuing to use other tools, such as lobbying, coalition-building and law reform initiatives to ensure that people with disabilities are enabled to live as full citizens in their communities. Concerns related to the need for capacity to exercise one’s rights points to the importance of designing enforcement mechanisms that are responsive to the unique ways in which people with intellectual disabilities understand information and express themselves. This includes the provision of supports needed to enable people with intellectual disabilities to exercise their legal capacity.[79] Finally, critiques concerning the way rights are described point to the importance of articulating and presenting rights education in a manner that is accessible and understandable to people with intellectual disabilities.
B. Legal Sources of a Human Rights-based Approach
1. The UN Convention on the Rights of Persons with Disabilities
On December 13, 2006 the United Nations adopted the Convention on the Rights of Persons with Disabilities (“CRPD”) and its Optional Protocol.[80] The CRPD opened for signature on March 30, 2007, receiving the highest number of signatories to a UN convention in history on its opening day. The treaty came into force on May 3, 2008.[81]
Building on a significant body of international treaties, conferences and programs that have recognized rights for people with disabilities, the CRPD provides a framework of goals and obligations for States Parties.[82] The purpose of the treaty is to promote respect for the dignity of people with disabilities and promote, protect and ensure the full and equal enjoyment of all human rights and freedoms by people with disabilities.[83] The CRPD has been characterized as a landmark document that marks a paradigm shift in attitudes and approaches to people with disabilities; no longer are people with disabilities viewed as objects of pity and charity, but rather as holders of fundamental rights and freedoms.[84] However, in international law, and in Canada and many other democratic countries, people with disabilities have long been viewed as bearers of rights. Thus the significance of the CRPD is not that it takes a novel approach to disability, but rather that it officially entrenches a rights-based approach in a multi-lateral, legally-binding international instrument. Moreover, a large number of states and civil society actors participated in the development and negotiation of the treaty, lending it a degree of authenticity and credibility. The CRPD, therefore, constitutes a significant global commitment to a human rights framework for people with disabilities.[85]
The CRPD articulates a number of general principles, including:
· Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;
· Non-discrimination;
· Full and effective participation and inclusion in society;
· Equality of opportunity; and
· Accessibility.[86]
These principles are intended to guide the interpretation and implementation of the specific legal obligations provided for in the CRPD. As general principles, they also represent the values and standards that underlie the rights-based paradigm articulated in the treaty.
Many of the specific obligations in the CRPD provide for rights and freedoms that are significant for people with intellectual disabilities, such as the right to life, the right to respect for privacy, freedom from exploitation, violence and abuse, and the right to inclusive education. Article 19 is of particular significance, as it provides for the right to live and be included in the community, and have access to community supports. Article 19 declares that:
States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:
(a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;
(b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;
(c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.[87]
Debates surrounding the development of the CRPD, and article 19 in particular, provide insight into the meaning of community living as envisioned by Canada, other country delegations, and non-governmental organizations (“NGOs”) that participated in the drafting of the treaty.[88] During the seventh session of debates it was agreed that article 19 was intended to capture the right of people with disabilities to freely choose to live in the community, a right that is closely related to principles of self-determination and autonomy. Article 19 was intended to protect this right and prevent isolation or segregation of people with disabilities.[89] This conception of community living reflects a human rights perspective; people with disabilities are entitled to live and receive services and supports in the community because all human beings develop their identities within social contexts and have rights to work, study, participate in community events, and spend time with family and friends.[90]
As a treaty that articulates a rights-based approach to disability issues, the CRPD provides an authoritative source for the development of such an approach in the context of developmental services. In particular, the general principles set out in article 3 and the values evident in article 19 can be drawn upon to develop this approach in the context of Ontario’s developmental services sector.
Canada signed the CRPD on March 30, 2007 and ratified it on March 11, 2010.[91] By ratifying the CRPD, Canada bound itself to the treaty and assumed the responsibility of ensuring that its obligations under the treaty are respected.[92] Ratification of the CRPD was, therefore, a significant step in confirming Canada’s commitment to the principles and obligations set out in the treaty, including the general principles underlying the rights-based paradigm articulated therein. In particular, ratification demonstrates Canada’s commitment to the right of people with disabilities to live independently, access appropriate supports, and be included in the community.
In Canada the usual method of implementing international human rights treaties is to rely on existing Canadian legislation and policies.[93] Often Canada ratifies international human rights treaties after it has determined that existing federal, provincial and territorial legislation, policies and programs conform and comply with the principles and obligations set out in the international treaty. Before ratifying a treaty the federal government seeks formal support from the provinces and territories. Typically, no new legislation is enacted to specifically implement the treaty into Canadian domestic law. In circumstances where new federal, provincial or territorial legislation is required, such new legislation will be passed prior to ratification.[94]
Assuming that this usual method is the approach being taken with respect to the CRPD, which it appears to be, [95] it is significant, as it signals Canada’s position that the CRPD was ratified on the basis that existing Canadian law and policy conforms to and complies with the treaty. This includes law and policy regarding services for people with intellectual disabilities, indicating that the Canadian government’s view is that these laws and policies are already consistent with article 19 and the general principles and HRB approach evident in the CRPD. If it is presumed that Canadian domestic law complies with the CRPD, it follows that domestic law should be interpreted and implemented in accordance with the international obligations contained in the treaty.[96] In the developmental services context, this implies that relevant provincial legislation, such as the Social Inclusion Act, should be interpreted and applied in a manner that is consistent with the general principles articulated in article 3 and the obligations provided for in article 19.[97] Canada’s ratification of the CRPD, therefore, provides additional rationale for the adoption of a human rights-based approach in the developmental services sector. Implementing such an approach would be consistent with Canada’s obligations, following ratification, to ensure that domestic legislation and policy comply with the CRPD.
2. Principles of Canadian Human Rights Law
Canadian equality rights and anti-discrimination law reflect similar principles as those provided for in article 3 of the CRPD. Section 15(1) of the Canadian Charter of Rights and Freedoms, also referred to as the equality rights provision, states that every individual is equal before and under the law and has the right to equal protection and benefit of the law without discrimination based on mental or physical disability.[98] Federal, provincial and territorial human rights codes prohibit discrimination on the basis of disability in certain prescribed areas of social life. Section 1 of Ontario’s Human Rights Code (“Code”) provides that every person has a right to equal treatment with respect to services, goods and facilities, without discrimination because of disability.[99] Underlying the Charter’s equality rights provision and the Code’s prohibition against discrimination are the values of inclusion, accessibility, independence and dignity for people with disabilities. Each of these values will be discussed below.
Charter jurisprudence has explained that inclusion in society is an important value underlying the equality guarantee in section 15(1) because much of the historical discrimination and disadvantage that people with disabilities have suffered has resulted from their exclusion from society. In Eldridge v. British Columbia (Attorney General) the Supreme Court of Canada recognized the historical disadvantage that people with disabilities have experienced:
It is an unfortunate truth that the history of disabled persons in Canada is largely one of exclusion and marginalization. Persons with disabilities have too often been excluded from the labour force, denied access to opportunities for social interaction and advancement, subjected to invidious stereotyping and relegated to institutions; … This historical disadvantage has to a great extent been shaped and perpetuated by the notion that disability is an abnormality or flaw. As a result, disabled persons have not generally been afforded the “equal concern, respect and consideration” that s. 15(1) of the Charter demands. Instead, they have been subjected to paternalistic attitudes of pity and charity, and their entrance into the social mainstream has been conditional upon their emulation of able-bodied norms; … One consequence of these attitudes is the persistent social and economic disadvantage faced by the disabled. …[100]
As a result, discrimination against people with disabilities has been described as the creation of barriers or the failure to accommodate the needs of a person with a disability resulting in the person being prevented from participating in society and the perpetuation of historical disadvantage. Full, effective and meaningful participation in society is, thus, recognized as a fundamental goal of equality for people with disabilities.[101] As the Supreme Court of Canada stated in Eaton v. Brant County Board of Education:
Exclusion from the mainstream of society results from the construction of a society based solely on “mainstream” attributes to which disabled persons will never be able to gain access. …it is the failure to make reasonable accommodation, to fine-tune society so that its structures and assumptions do not result in the relegation and banishment of disabled persons from participation, which results in discrimination against them. … It is recognition of the actual characteristics, and reasonable accommodation of these characteristics which is the central purpose of s. 15(1) in relation to disability.[102]
Similarly, the Ontario Human Rights Commission has cited inclusion in society as a key principle and goal underlying the Code’s prohibition against discrimination:
… our society should be structured and designed for inclusiveness. This principle, which is sometimes referred to as integration, emphasizes barrier-free design and equal participation of persons with varying levels of ability. … Inclusive design and integration are also preferable to “modification of rules” or “barrier removal,” terms that, although popular, assume that the status quo (usually designed by able-bodied persons) simply needs an adjustment to render it acceptable. In fact, inclusive design may involve an entirely different approach. It is based on positive steps needed to ensure equal participation for those who have experienced historical disadvantage and exclusion from society’s benefits.[103]
Related to the concept of inclusion for people with disabilities are the principles of accessibility and independence. Accessibility refers to the extent to which a good, service, program, process, or other thing is usable by people with disabilities. Independence is the extent to which people with disabilities must depend on others to access goods, services, programs, processes and other aspects of social life. Enhancing accessibility and independence is one way to enable people with disabilities to participate more fully in Canadian society, on an equal basis as people without disabilities. The Ontario Human Rights Commission has stated that for people with disabilities section 1 of the Code includes the right to accessible workplaces, public transit, health services, restaurants, shops and housing.[104]
Accommodation is seen as a way to enhance accessibility and remove barriers that impede full participation. Canadian human rights law recognizes the relationship of accommodation to equality and non-discrimination, and therefore imposes upon government actors and private sector employers, service providers, landlords and others a duty to accommodate people with disabilities. Under section15(1) of the Charter this duty is subject to section 1 defenses, while under provincial and federal human rights statutes this duty extends to the point of undue hardship. Accommodation mandates that steps be taken to facilitate the participation of people with disabilities in all aspects of community life. In Council of Canadians with Disabilities v. VIA Rail the Supreme Court of Canada stated that accessibility and independence are two objectives of accommodation:
To redress discriminatory exclusions, human rights law favours approaches that encourage, rather than fetter, independence and access. This means an approach that, to the extent structurally, economically and otherwise reasonably possible, seeks to minimize or eliminate the disadvantages created by disabilities. It is a concept known as reasonable accommodation.[105]
Ontario’s Human Rights Commission has commented that:
Privacy, confidentiality, comfort, autonomy, individuality and self-esteem are important factors as well to show whether an accommodation maximizes integration and promotes full participation in society.[106]
Accommodation is, therefore, a way in which the principles of accessibility and independence can be promoted and realized for people with disabilities.
Respect for human dignity is a core principle underlying section 15(1) of the Charter and section 1 of the Code. Dignity requires respect for the intrinsic value of each person’s unique capabilities.[107] Accommodation must be provided in a manner that most respects the dignity and individuality of the person with the disability. According to the Ontario Human Rights Commission, dignity is an essential consideration when determining whether discrimination on the basis of disability has occurred:
Dignity includes consideration of how accommodation is provided and the individual’s own participation in the process. … Human dignity encompasses individual self-respect and self-worth. It is concerned with physical and psychological integrity and empowerment. It is harmed when people are marginalized, stigmatized, ignored or devalued.[108]
The Supreme Court of Canada has recognized that the purpose of section 15(1) of the Charter is to prevent violations of human dignity and freedom that occur through the imposition of disadvantage, stereotyping or prejudice, and to promote a society in which all persons enjoy equal recognition at law as human beings and members of Canadian society. Prior to the Supreme Court of Canada’s 2008 decision in R. v. Kapp, dignity was an element of the legal test that courts applied when determining whether a government action or law had violated section 15(1) of the Charter. In Kapp the Supreme Court recognized the practical difficulties associated with utilizing an abstract concept like human dignity as a legal test, noting that it was confusing, difficult to apply, had resulted in additional burdens being placed on claimants of equality rights, and had led to formalistic analyses of equality.[109] Therefore following Kapp, a dignity analysis is, arguably, no longer part of the legal test under section 15(1). Nevertheless, dignity remains a key principle underlying the Charter’s equality provision. In Kapp the Supreme Court made the following instructive comment:
There can be no doubt that human dignity is an essential value underlying the s. 15 equality guarantee. In fact, the protection of all of the rights guaranteed by the Charter has as its lodestar the promotion of human dignity. As Dickson C.J. said in R. v. Oakes …: The Court must be guided by the values and principles essential to a free and democratic society which I believe embody, to name but a few, respect for the inherent dignity of the human person …[110]
Dignity, thus, remains a foundational principle that informs Canadian human rights law.
There is a wealth of jurisprudence interpreting section 15(1) of the Charter and section 1 of the Code. The values and principles inherent in those legal provisions are, therefore, well developed in law. On the other hand, section 7 of the Charter is still in its infancy insofar as claims of social justice are concerned. Nevertheless section 7 has potential to be used to support disability rights claims.[111] Section 7 provides that everyone has the right to life, liberty and security of the person. These fundamental rights can be interfered with only in accordance with principles of fundamental justice.[112] The CRPD offers a way of discerning the principles underlying section 7 that are relevant to disability rights claims. If section 7 is interpreted in accordance with articles 3 and 19 of the CRPD, section 7 can be said to incorporate the principles of accessibility, inclusion and personal autonomy to make life choices. Article 19 speaks to liberty by its insistence that people with disabilities be afforded the right to choose their place of residence, and have access to a range of supports to enable them to live in the community without being isolated or segregated. Section 7 can also be said to incorporate the principle of dignity since exercising choice over where one lives and being free from social isolation will contribute to self-respect and self-worth for people with disabilities.
Canadian human rights law thus reflects similar principles as those set out in the CRPD, including full and effective participation in society; accessibility and independence; and respect for the inherent dignity of people with disabilities. These values are inherent in the Charter’s equality provision and in the protection from discrimination afforded by provincial, territorial and federal human rights statutes.
C. Principles of a Human Rights-based Approach to Enforcing Service Rights
The goals of a human rights-based approach are to develop a culture of rights in the developmental services sector; empower people with disabilities to be active participants and consumers of services; and provide ways in which services are accountable to the people who receive them. Drawing on the principles set out in the CRPD and in Canadian human rights law, the following four principles form the foundation of an HRB approach to enforcing service rights:
· Accountability;
· Accessibility;
· Participation; and
· Independence
Most of these principles are common to the CRPD and Canadian human rights law, demonstrating that they reflect international and domestic human rights values and making them suitable, relevant principles to guide the development of a human rights-based approach to enforcement. Accountability is the one principle that does not appear in the CRPD or Canadian human rights law. Nevertheless accountability is included here as it appears in the literature as a key element associated with a human rights-based approach. Accountability is also a principle that is logically required for any enforcement scheme.
1. Accountability
Accountability is a fundamental principle in an HRB approach. The United Nations has called accountability “the raison d’etre of the rights-based approach…”[113] Yamin and other authors have argued that a human rights framework establishes that all people, by virtue of being human, have a claim for redress when they are treated unfairly.[114] “Accountability”, she writes, “is a central feature of any rights-based approach … because it converts passive beneficiaries into claims-holders and identifies states and other actors as duty-bearers that can be held responsible for their discharge of legal, and not merely moral, obligations.”[115] Within a rights-based approach accountability means holding duty-bearers responsible for fulfilling their obligation to promote and respect rights.[116] Enshrining rights in legislation does not magically resolve conflicts or transform people with disabilities into active participants in the developmental services system. Government and service providers must be accountable for ensuring that those rights are promoted and respected.
Applied to the developmental services context, accountability requires the development and implementation of effective enforcement mechanisms to empower and enable people with intellectual disabilities to hold government and service providers responsible when rights are not respected.
2. Accessibility
Accessibility is one of the general principles listed in article 3 of the CRPD. It is also one of the foundational principles reflected in Canadian human rights law, and is closely related to equality and non-discrimination for people with disabilities. Ensuring that services, programs and other elements of society are designed to be usable by people with disabilities, or that accommodations are made to enable people with disabilities to access society are ways to remove discriminatory barriers and enhance equal participation. Drawing on the CRPD framework and Canadian human rights law, accessibility must be a central principle underlying an HRB approach to enforcement.
Applied to the developmental services context, accessibility requires that people with disabilities know about their service rights and the various mechanisms available to enforce those rights. Furthermore, the principle requires enforcement mechanisms to be designed so that people with disabilities can access and utilize them effectively. Enforcement mechanisms must be designed so that appropriate accommodations and supports are available. Enforcement mechanisms must be tailored to the unique needs of people with intellectual disabilities and particular circumstances of the developmental services sector. Mechanisms that are overly complex, legalistic or otherwise inaccessible would create barriers and prevent people with disabilities from using them, ultimately undercutting the principle of accessibility and the very purpose for which the enforcement mechanism was created.
3. Participation and Independence
Full, effective and meaningful participation is a key principle that appears in international and domestic law. Participation and inclusion in society is one of the general principles referred to in article 3 of the CRPD. It is also reflected in Canadian human rights law as a fundamental goal of equality rights and the protection from discrimination for people with disabilities.
The principle of participation requires that people with disabilities are integrated into society, participating actively in the formulation and implementation of policies, services and supports that directly affect them. Participation requires that people with intellectual disabilities be consulted with and involved in the development and implementation of enforcement mechanisms in the developmental services sector.[117]
Self-advocacy is viewed by many disability scholars and stakeholders with disabilities as one of the primary tools for advancing the participation of people with intellectual disabilities in developmental service systems. Self-advocacy must, therefore, play a significant role in enforcement schemes.[118] Self-advocacy provides knowledge, skills and partnerships to enable and encourage people with intellectual disabilities to advocate for their beliefs, express their needs and make decisions about their lives. Self-advocacy necessarily includes education about rights and developing skills to enable a person to articulate their needs, feelings and beliefs. Often, self-advocacy also includes developing connections and partnerships with others who are similarly-situated and/ or with already-established advocacy groups led by and for people with intellectual disabilities.[119] Becoming a member of a self-advocacy group has been described as becoming part of a social rights movement, whose purpose is to achieve group and personal goals and fight discrimination. Each self-advocacy group determines its own goals; some focus on training all members to be self determined self-advocates; others focus on systemic issues of discrimination against people with intellectual disabilities; and others are primarily social groups.[120]
People First is a well-known international self-advocacy movement for people with intellectual disabilities. In Canada, People First has a national chapter, provincial and territorial chapters, and local community chapters.[121] The goals of People First of Canada are to promote equality for all people who have been labeled with an intellectual disability; enable people with disabilities to speak for themselves and make their own decisions; and teach the community about the movement and issues that affect people who have been labeled with an intellectual disability. Peter Park, Althea Monteiro, and Bruce Kappel describe People First groups as:
…made up of people who have been labeled (with a developmental or intellectual disability). The groups are run and controlled by people who have been labeled. …People First members are … called ‘self advocates’. Self advocates are people who speak up for themselves. They know their rights. They stand up for their rights. Self advocates speak up about issues that are important to them and other people who have been labeled.[122]
Self-advocacy can reduce people with intellectual disabilities’ dependence on service providers, family members and others to ensure that supports are appropriate and adequate. Self-advocacy can also enable people with intellectual disabilities to gain new skills, confidence and the ability to identify concerns and take action. As a result, this form of participation in the developmental services system can actualize the principle of independence for some people with disabilities.
D. Conclusions
Adopting a human rights-based approach has transformative potential for Ontario’s developmental services sector. Philosophically an HRB approach can help to address the historical discrimination and segregation that people with disabilities have endured. Practically, the implementation of such an approach can change the role assigned to people with disabilities in the service delivery system, and ultimately create services that are more responsive to the needs of people with disabilities and accountable to them.
The Convention on the Rights of People with Disabilities constitutes a significant global commitment to a human rights framework for people with disabilities, and provides an authoritative source for informing an HRB approach. Canadian human rights law provides another authoritative source, and articulates similar principles as those enumerated in article 3 of the CRPD. Drawing on these sources, we propose that the principles of accountability, accessibility, participation and independence are important foundational elements of an HRB approach to enforcing service rights. Underlying each of these principles is the value of respect for human dignity. These principles do not stand alone, but are interrelated with one another, and as a group should guide the development and implementation of mechanisms to enable people with disabilities to enforce their rights in the developmental services sector.
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