Applying the four principles of a human rights-based approach, and drawing on ARCH’s experience, the input of people with disabilities and other stakeholders, ARCH is of the view that the following are key elements that must be part of a scheme to enforce the service rights of people with intellectual disabilities who receive government-funded services and supports:
· Rights Education: People with intellectual disabilities must be educated about their rights when receiving developmental services, as well as their rights more generally. A rights curriculum must be created to provide education about service rights, education about other rights and related legal issues; training on identifying situations in which rights are threatened; and what actions can be taken. While rights education initiatives should be primarily targeted to people with disabilities, service providers, administrators, support staff, and family members must also receive rights education.
· Complaint Mechanisms: The Social Inclusion Act requires service providers to establish complaint procedures, but does not specify any details about these procedures. Given the importance of ensuring that an appropriate, accessible complaint mechanism exists for every service provider, the Social Inclusion Act framework must be amended to include more detailed provisions regarding complaint mechanisms, including provisions to ensure that these mechanisms will be accessible for people with intellectual disabilities.
· Appeals to an Independent Administrative Body: The principle of accountability requires that people with disabilities have recourse to an independent administrative body if they are not satisfied with the service provider’s response to the complaint. The Social Inclusion Act framework should be amended to include the designation of a newly constituted, independent administrative body and a process to receive appeals from complaints filed with service providers. The appeal body’s processes and procedures must be accessible to people with intellectual disabilities. In addition to adjudicating individual appeals, the appeal body must create a process for annually reviewing appeals to discern trends and issues needing broader attention by the Ministry of Community and Social Services.
· Peer Advocacy Committees: Self-advocacy is a vital component of a system of enforcement for the developmental services sector. Self-advocacy is a means to implement the principle of participation by empowering people with disabilities, increasing self-confidence, enabling greater autonomy in decision-making, and providing the supports necessary to enable people to make complaints or raise concerns about services. Peer Advocacy Committees composed of people who receive developmental services must be created for geographic regions throughout Ontario. Within their geographic regions, Committees would conduct rights education activities; support recipients of services to raise concerns and access complaint and appeal mechanisms; and meet annually with the Ministry of Community and Social Services to report on systemic concerns and identify issues that require the Ministry’s attention.
A. Rights Education
Stakeholders with disabilities reported that many people who receive developmental services do not know that they have legal rights or that they are entitled to service rights such as respect for privacy and the right to make individual choices. Moreover, stakeholders reported that the culture of many group homes and support services is such that most aspects of people’s lives are controlled by service providers, family members, guardians and others. People with disabilities are told what to do, when, and with whom. This culture of control and absence of independent choice contribute to a lack of awareness about rights, a sense that there are no other options, and a culture in which making complaints or raising concerns about services is not possible.
Stakeholders with disabilities uniformly stated that it is necessary to educate people with intellectual disabilities about their rights. Some linked education about rights with issues of dignity, stating that rights education was important because people with disabilities are people first. Others felt that rights education was a way to empower people with disabilities – if people know about their rights they would be better able to exercise independence, have privacy and make choices about their day-to-day lives. Several stakeholders spoke of personal experiences in which learning about their rights and gaining advocacy skills had enabled them to gain self-confidence and improve their lives by making their own choices and advocating for their entitlements. Thus, rights education was seen by stakeholders with disabilities as an important way to achieve the goals of a human rights-based approach, namely to develop a culture of rights in the developmental services sector and empower people with disabilities to be active participants and consumers of services.
Stakeholders who work in the developmental services sector echoed the sentiments of stakeholders with disabilities regarding the need for rights education. They highlighted the need for concerted rights education efforts and advocacy skills training. It was suggested that these activities must be provided on an on-going basis. One service provider noted that from an ethical point of view it was not acceptable to provide people with service rights without any training or support to express and enforce those rights.
The concept of rights education is supported by the human rights principle of accessibility. In order to access enforcement mechanisms, people with disabilities must know about their service rights and the various mechanisms available to enforce those rights. Armed with information, people with disabilities will be in a better position to exercise and enforce their rights.
Rights education would be facilitated by the creation of a general rights curriculum. Orienting people with disabilities to the Social Inclusion Act and their service rights is only one component of the content of this curriculum. The curriculum must also include training on identifying and recognizing situations in which rights are being threatened or violated. Equally, the curriculum must include training on self-advocacy skills and what actions can be taken when rights are threatened or violated. This could include training and information on service providers’ complaints procedures and other enforcement mechanisms. Legal information about issues related to service rights should be built into the curriculum; this may include information about human rights, informed consent, substitute decision-making, privacy rights and other legal issues.
People with disabilities must be educated about their service rights as well as other, more general rights, such as the right to be free from discrimination, the right to equality before the law, and the right to vote. Education about general rights is important so that people with disabilities may exercise the rights and responsibilities of citizenship; become aware of legal protections that exist outside the developmental services sphere; and participate in broader society. Many of the stakeholders with disabilities who participated in the consultations were aware of their general and service rights, however there was some confusion about which rights applied in which context. This points to the need for clarity when designing educational curricula so that people with disabilities are provided with legally accurate rights information.
Critiques concerning rights education point to the importance of articulating and presenting rights information in a manner that is accessible and understandable to people with intellectual disabilities. This was a concern echoed consistently by stakeholders with disabilities. Stakeholders stated that rights information must be presented in plain language. The use of pictograms and cartoons was also suggested. Equally, attention must be paid to ensuring that the manner in which rights education is delivered is accessible to people with intellectual disabilities. It is unlikely that listening to a lecture of several hours will be an effective means of transmitting the information. Creative means of delivering the rights curriculum are necessary, such as role play scenarios, storytelling, games, videos and small group discussions. Activities that simulate everyday, real-life situations are more likely to enable people with intellectual disabilities to apply the knowledge and skills they learn to their every-day lives. Rather than providing one educational session, several short sessions may be more effective. Educational activities that are interactive and incorporate audio, video and other technology may be especially engaging and effective. In addition, rights education must be ongoing to facilitate a culture of rights awareness and ensure that people have opportunities to ask questions and obtain clarification about rights issues.
Critics of rights assert that providing legislatively enshrined service rights and accompanying enforcement mechanisms are unlikely to imbue the developmental services sector with a culture of rights awareness and respect unless the attitudes and beliefs of service providers are changed. Similar concerns were voiced by stakeholders with disabilities, who suggested that support workers must also receive rights education. Stakeholders also noted that some family members can be a source of valuable support, while others perpetuate or collude in rights violations. ARCH is of the view that given the wide-ranging lack of knowledge about service rights among people with disabilities, and the importance of rights education to the empowerment of people with disabilities, efforts to infuse rights into this sector must be focused on people with disabilities. However, recognizing that a change in culture depends on all participants in the sector, service providers, administrators, workers, family members and others who support people with disabilities must also be educated about and sensitized to rights issues. It must also be noted that a change in organizational and sectoral culture will not happen quickly. One service provider reported that rights issues only began to be raised by people with disabilities and support workers several years after management began a process of rights education.
When asked who should provide rights education, stakeholders with disabilities overwhelmingly stated that it would be most effective if self-advoc