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.
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.
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.
Adopting such an approach has significant implications, both philosophically and practically. 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.” 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.
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.
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. 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. 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.
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.
Other critics draw attention to the issue of rights education, noting that rights are useless if people are unable to understand them. 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.
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 disabilitie