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-advocates, people with intellectual disabilities who either receive or are familiar with developmental services, provided the education. Stakeholders felt that people with intellectual disabilities were more likely to trust self-advocates because they were viewed as peers, rather than outsiders. Trust was considered to be one of the most important elements to the success of rights education and enforcement. Stakeholders expressed concern that people may be reluctant to participate in rights education, ask questions or discuss rights violations if educational sessions were led by someone other than a self-advocate. Such reluctance would likely be due to dependence on support workers and fear of negative consequences or possible reprisals if concerns about services or rights violations were raised. ARCH recommends that the rights education curriculum be developed in consultation and partnership with people with intellectual disabilities and consumer-led self-advocacy organizations such as People First. Self-advocates should be supported to deliver the curriculum to people with disabilities. This can be done via Peer Advocacy Committees, which will be described later in this section.
ARCH is of the view that rights education should be mandatory for people who receive developmental services and those who work in the developmental services system. For people with disabilities, rights education must be done in the absence of service providers, and in a manner that ensures confidentiality. These elements may assist in protecting people with disabilities from reprisals, as support workers would not know when rights education was received or what concerns may have been raised, and by whom, during educational sessions.
B. Complaint Mechanisms
The majority of stakeholders with disabilities agreed that complaint mechanisms, formalized processes by which people with disabilities can raise concerns with service providers and receive a response, are important accountability measures. The human rights principle of accessibility requires that complaint mechanisms be designed to ensure that people with disabilities can access and utilize them effectively. Complaints procedures that are overly complex, legalistic or otherwise inaccessible would create barriers that prevent people with disabilities from using them, ultimately undercutting the principle of accessibility and the very purpose for which the complaint mechanism was created.
The Social Inclusion Act requires service providers to establish complaint procedures, however the Act and draft regulations do not set out any details with respect to such procedures. Like other jurisdictions, many Ontario service providers currently have complaints procedures or complaints policies, however these mechanisms vary from one provider to another. Stakeholders with disabilities who participated in consultations were of the view that some agencies have effective complaint mechanisms, while other agencies do not have such mechanisms or people are not aware of their existence. Of those service providers who have complaint mechanisms, many require or prefer that the complaint initially be made to the staff person who works with the person with the disability. Stakeholders noted that this presented a barrier because often the complaint or concern related directly to that worker, and people felt uncomfortable or feared complaining to that individual.
Given the importance of ensuring that an appropriate, accessible complaint mechanism exists for every service provider in Ontario, ARCH recommends that the Social Inclusion Act framework include more detailed provisions regarding complaint mechanisms. These provisions could be incorporated into the legislative framework via an amendment to the Act or, the enactment of regulations pursuant to s. 38(p) of the Act. Such provisions should require service providers to create policies and procedures and establish a formal complaint mechanism that people can access when they wish to raise concerns, recommend changes or complain about the services and supports they receive. Complaint mechanisms must include, at minimum, information on how the complaint can be made and to whom it should be directed; what efforts the service provider will undertake to address and resolve the complaint; procedures for written notification regarding the actions to be taken to address the complaint; timeframes within which the agency will respond to the complaint and take action to address and resolve the complaint; a requirement that the service provider provide information on advocacy resources that the person can choose to access if she or he wants support to make the complaint; and information on what steps the person can take if she or he is not satisfied with the service provider’s response to the complaint. This should include information about various levels of review within the agency, as well as information about appeal mechanisms. The complaint mechanism should not require complaints to be made initially to the person’s primary support worker. Instead, complaint mechanisms should offer various points of entry.
Consistent with the principle of accessibility, complaint mechanisms must be accessible and useable by people with intellectual disabilities. Legislative provisions should require service providers to ensure that people with disabilities be informed about the complaint mechanism in a language and manner that is meaningful to them. This would include the use of plain language, pictograms and other accessible means. People should be informed of the availability of such mechanisms when they begin receiving services and annually thereafter. Moreover, complaint forms and other administrative components of complaint mechanisms must be written in accessible language, and not be overly lengthy or complex.
Complaint mechanisms must be designed so that appropriate accommodations and supports are available. Complaint policies or procedures should state that the person making the complaint has the right to have an advocate, family member, or friend support him or her throughout the complaint process. People with disabilities may also choose to receive support through Peer Advocacy Committees.
As discussed earlier, a significant barrier that prevents people with intellectual disabilities from utilizing complaint mechanisms is fear of reprisal. To combat this barrier, complaint mechanisms must build in safeguards to ensure that people who make complaints are not subject to retaliation, reprisal or threats. The Social Inclusion Act framework must include a provision prohibiting such actions. In addition, it is hoped that rights education combined with voluntary monitoring on the part of Peer Advocacy Committees (as described later in this section) would reduce the incidence and fear of reprisals, and contribute to the creation of a culture of rights.
The primary function of complaint mechanisms is to address the individual concerns of people who receive services, however complaint mechanisms should also be used to uncover and address systemic issues. ARCH recommends that the Social Inclusion Act framework require service providers to develop policies and procedures for reviewing all complaints to determine trends, areas needing performance improvement and actions to be taken. Service providers must be required to keep records of all complaints received and their outcomes. These records should be reviewed annually, and recommendations should be made for service improvement, revisions to policies and procedures, changes in practice, informing the training of staff, and investigation of systemic concerns.
C. Appeals to an Independent Administrative Body
The creation of complaint mechanisms to enable people with disabilities to raise rights-related concerns with service providers is important, but it is not sufficient. The human rights principle of accountability requires that people with disabilities must have recourse to an independent adjudicative body if they are not satisfied with the service provider’s response to the complaint.
ARCH recommends that the Social Inclusion Act framework be amended to include the designation of an independent administrative body and a process to receive appeals from complaints filed with service providers. The administrative body would be a newly-constituted complaint appeals and review body made up of members who have expertise or experience in the developmental services sector; knowledge of relevant legislation including the Social Inclusion Act and accompanying regulations; and knowledge of relevant administrative law principles including natural justice, fairness and due process. The appeal body would have fairly broad remedial powers to dismiss appeals, make orders requiring service providers to remedy rights violations, or take appropriate actions within specified periods of time. The appeal body may also require investigative powers to ensure that it has access to sufficient information to make a fair decision, and that it can verify information received from the parties.
Parties to an appeal would likely be the person or people who made the original complaint and the service provider. Elements of the appeal process would include a timeframe within which the appeal body would conduct mediation or dispute resolution or begin a hearing after it receives the appeal, and a prompt timeframe within which a decision would be rendered and the parties notified. Legislation establishing the appeal mechanism must strictly prohibit any threats, reprisals or retaliation against a person who exercises their right to appeal.
The appeal board should create a process for annually reviewing appeals to determine trends and areas needing performance improvement and/or greater enforcement action. Such information could be delivered to the Ministry of Community and Social Services via an annual report. This would be a valuable function of the appeal body, as it may assist in addressing systemic concerns in a proactive manner.
Of utmost importance when designing the appeal body’s process is the need to ensure that the process is accessible to people with intellectual disabilities. A formal, legalistic process is not likely to achieve this objective. Rather, the appeal body’s process must be simplified, fairly flexible and must incorporate accessibility features that enable people with intellectual disabilities to readily participate in the process. This may include, for example, creating appeal forms and instructions about the process that are in plain language, pictograms or other accessible format. Appeal body members must have an understanding of their obligation to accommodate people with disabilities during the appeal process, and must receive practical training to enable them to fulfill this obligation. Procedures must include non-adversarial options for resolution of the appeal, such as informal meetings and facilitated mediation. Procedural barriers that may prevent people from participating, such as requirements to draft and file large numbers of documents, adhere to tight deadlines, or present complex legal arguments, must be modified. Similarly, attention must be paid to ensure that procedural requirements regarding mental capacity do not create undue barriers that prevent people from participating in the process. People with disabilities may want or need the assistance of legal counsel or a lay advocate during the appeal process, and the appeal body may be able to provide appropriate referrals. Equally, people should be entitled to have an advocate, family member, or friend support them throughout the appeal process.
D. Peer Advocacy Committees
Self-advocacy has been defined by people with disabilities as:
…learning to speak assertively for yourself, learning to make decisions and solve problems on your own, and learning, practicing and implementing the rights and responsibilities of citizenship.
According to Tim Stainton, three elements are necessary for self-advocacy to be effective. There must be a clear recognition of the individual’s right to decide for themself; individuals must be given the support and information necessary to make informed decisions; and alternate forms of communication must be recognized and supported.
As discussed earlier, the literature on human rights-based approaches views self-advocacy as a primary means by which people with disabilities can become active participants in service systems. Self-advocacy provides knowledge, skills and partnerships to enable and support people with intellectual disabilities to advocate for their beliefs, express their needs and make decisions about their lives. Stakeholders with disabilities were strongly in favour of self-advocacy as a tool for enforcement. They echoed the findings in the literature, reporting that from personal experiences and their observations of others, self-advocacy was a means to empower people with disabilities, increase self-confidence, enable greater autonomy in decision-making, and provide support to make complaints or raise concerns about services. Making self-advocacy part of an enforcement system in the developmental services sector is, therefore, a way to implement the principle of participation.
ARCH recommends that a Peer Advocacy Committee be created for each geographic region in the province. Each committee would be comprised of members, all of whom receive services or funding from one or more of the service providers in that geographic region. Committees would be responsible for working with people with disabilities and service providers in their geographic region.
Committees would have three primary roles. First, they would be responsible for conducting rights education activities with people who receive services in their geographic area. Committee members would receive training on the content of the rights education curriculum and methodologies for delivering the information in an accessible manner. Rights education would include information regarding enforcement of rights, including how to make a complaint or conduct an appeal. Second, committee members would be available to support individuals to make complaints and access established complaint and appeal mechanisms. This may include providing information about available complaint and appeal mechanisms; assisting with the identification of situations in which service rights have been threatened or violated and it is appropriate to make a complaint; assisting with the completion of administrative requirements such as filling out complaint forms; supporting the characterization of the complaint and identification of which service rights were threatened or violated; and connecting the person with advocacy or support resources if necessary. Such support would be provided at the request of the individual and in a confidential manner. The committees’ final role would be to meet annually with the Ministry of Community and Social Services to report on systemic concerns and assist in identifying issues that could be addressed by the Ministry.
Stakeholders with disabilities generally felt that supporting people to access enforcement mechanisms was best done through Peer Advocacy Committees, rather than through external advocacy resources, such as an ombudsperson or designated advocate. Trust was cited as a very important consideration when deciding whether to make a complaint or seek assistance in doing so. Members of Peer Advocacy Committees were viewed as people who could be trusted much more readily than external advocates because of their status as fellow service recipients and members of the disability community. One stakeholder stated that members of Peer Advocacy Committees would feel more like family and would speak the same language as those they support, as opposed to outsiders who don’t use plain language and tend to make people who receive developmental services nervous. As members of the community of people with disabilities who receive developmental services, committee members would be present in the day-to-day lives of those they would support. This visibility and familiarity would enable people to have relationships with members, develop trust, and feel much more comfortable relying on members for support when enforcing their rights. As a result, Peer Advocacy Committee members would be called upon more often, making them likely to be more effective at supporting and enabling people with disabilities to raise concerns and make complaints than external advocates.
The visibility and familiarity of Peer Advocacy Committees within the community of people who receive developmental services may also help to address some of the unique needs of people with intellectual disabilities who do not speak or appear to have very limited understanding of their rights. Members of the Peer Advocacy Committee who have long-term relationships with such individuals may be better able to communicate with them, interpret their communication and understand when they are distressed or upset. This would enable Peer Advocacy Committees to deliver rights education in a manner that is tailored to the particular communication style and needs of people who may otherwise not receive or benefit from such education. Peer Advocacy Committee members may also be able to identify potential situations in which the person’s rights have been threatened or violated, and offer their support. This kind of proactive approach to advocacy support cannot be offered by external advocates who are unfamiliar with the personality, unique communication needs, and day-to-day lives of people with intellectual disabilities.
The presence of Peer Advocacy Committee members in the community may also assist in reducing fear of reprisals or retaliation, which is one of the primary barriers to making complaints regarding service rights. Committee members who have assisted an individual to bring forward a complaint will be aware of the nature of the complaint and the parties involved. The committee member will also be familiar with the day-to-day functioning of a group home or service provider and the nature of the relationship between the complainant and their support workers. As a result, the committee member will be in a position to monitor this relationship and become aware of any threats, reprisals or retaliation the complainant is subject to, either through his or her own observation or through conversations with the complainant. In consultation with the complainant, the committee member may then assist in engaging the Peer Advocacy Committee to address such reprisals or retaliation. Committee members may be reluctant to take on such a role due to their own fears of retaliation. As a result, monitoring of retaliation and reprisal should be done at the discretion and option of the individual committee member or Peer Advocacy Committee. This should not be one of the roles officially required of Peer Advocacy Committees.
It is vital for Peer Advocacy Committees to be supported in their work by independent facilitators or advisors. The concept of self-advocacy groups being supported by facilitators and advisors is not new. Facilitators have successfully supported self-advocacy groups for decades, and play a key role in Canadian consumer-led self-advocacy organizations, such as People First. The role of the facilitator is to ensure that committee members are appropriately supported to fulfill their roles. This could include ensuring that members receive appropriate training; coordinating and arranging for meetings and other administrative tasks; providing plain language interpretation during meetings with government or service providers; and locating additional supports that committees may require such as legal aid services or media contacts. Facilitators do not make decisions for committee members or provide advocacy support instead of committee members. Rather, they are skilled at assisting committee members to acquire the skills and knowledge needed to fulfill their role. Facilitators are committed to empowerment, and assist the committee while respecting the dignity and self-determination of individual committee members. Similar to facilitators, advisors do not make decisions for committee members. Advisors provide guidance and advice in their area of expertise and help committee members to understand the pros, cons and implications of decisions. Often a self-advocacy group will have several advisors.
Stakeholders emphasized the importance of ensuring that Peer Advocacy Committees are completely independent from service agencies and government. This is vital in order to ensure that Peer Advocacy Committees are able to fulfill their roles, without being restricted due to conflicts of interest, accountability to a service provider’s Board of Directors, conditions tied to funding, or simply what others decide may be the best course of action. The importance of independence was highlighted, as several stakeholders spoke of personal experiences in which they were asked to participate in a service provider’s initiative or provide the perspective of people with intellectual disabilities, only to have their contributions ignored, have very little input into decision-making, and feel as if they had served a tokenistic role. Interestingly, the importance of independence was echoed by stakeholders in Quebec who are familiar with the role of Users’ Committees in that province.
The principle of independence applies to facilitators and advisors as well. Peer Advocacy Committees must receive government funding to employ facilitators and advisors. Facilitators and advisors must be recognized as employees of Peer Advocacy Committees, not as employees of government or service providers. Peer Advocacy Committees must be able to interview and hire facilitators and advisors of their choosing, evaluate their performance, and terminate those who do not fulfill their roles appropriately. Committee members would also be responsible for orienting and training their facilitators and advisors.
It must be noted that a number of Ontario service providers presently have self-advocate committees that are associated with the agency. The role that these committees play varies from agency to agency, but can include providing information to the Board of Directors about policies and issues that affect people with intellectual disabilities; working on specific issues that arise associated with the rights, needs and interests of people with intellectual disabilities; and playing a role in decisions made by the agency that affect people with intellectual disabilities. These self-advocate committees serve a vital role in empowering people with intellectual disabilities and enabling them to participate in the provision of developmental services. However, this is distinct from the Peer Advocacy Committees proposed in this report. If implemented, Peer Advocacy Committees would have a specific mandate to provide on-going rights education, assistance with complaints, systemic advice to the government and voluntary monitoring. Self-advocate committees may conduct some of these activities from time to time, but do not have a mandate to do so in a concerted, on-going manner. In addition, Peer Advocacy Committees must be independent from government and service providers, while existing self-advocate committees are associated with a service provider or agency. Self-advocate committees are also distinct from consumer-driven organizations such as People First. Given the existence of self-advocate committees and People First groups, it will be important to name the Peer Advocacy Committees in a way that recognizes the distinctions between these groups. If Peer Advocacy Committees are implemented in Ontario, ARCH recommends that consultations be held with the community of people with intellectual disabilities regarding appropriate terminology. Consultation would also be able to identify existing networks and structures within the community that could participate in the development and implementation of Peer Advocacy Committees.
Based on the human rights principles of accountability, accessibility, participation and independence, each of the recommended mechanisms is an important part of a scheme to enforce the service rights of people with intellectual disabilities. To have maximum impact, it is necessary to implement all of the mechanisms, as they can work together to address some of the unique challenges in the developmental services sector. For example, rights education for people with disabilities, service providers, support workers and family members will contribute to a culture of rights, thereby reducing the incidence of reprisals or retaliation when people with disabilities make complaints or raise concerns. Rights education alone, however, will certainly not ensure complete security from reprisals. The potential for reducing the incidence and fear of reprisals will be greatly enhanced if rights education is combined with voluntary monitoring that Peer Advocacy Committees may choose to undertake. Similarly, complaint mechanisms provide a vehicle for individuals to raise concerns about service rights, however without the support of a Peer Advocacy Committee, many complaints may not be made due to fear or lack of awareness about the process. Having a mechanism to make complaints to service providers is important, but without an independent appeal process complaints may not be effective. It is important to note that each of the recommended enforcement mechanisms incorporate an element of systemic oversight, advocacy or enforcement. Together, the recommended enforcement mechanisms can ensure that common concerns or rights violations are addressed on a systemic basis, in a proactive manner.
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