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. Effec