Autism Society Ontario
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1 Autism Society Ontario (full text) submission to the Ontario Human Rights Commission in response to the Commission s questionnaire, Reviewing Ontario's Human Rights System September 16,
2 About Autism Society Ontario and Autism Spectrum Disorder Autism Society Ontario (ASO) has been invited to contribute to this discussion process. ASO is a charitable organization supporting the work of 31 chapters through a large base of volunteers, a volunteer Board of Directors and a provincial head office located in Toronto. Established in 1974, ASO s work includes public awareness and education about Autism Spectrum Disorders (ASD), support for families of children with ASD, ASD research and work with provincial leaders in order to realise our vision of acceptance and opportunities for all individuals with ASD. With a prevalence rate of 1 in 165, Autism Spectrum Disorder is ten times more common than estimates from ten years ago. Based on Ontario s population statistics, it affects over 70,000 individuals in this province. ASD is a neurological disorder of development which affects a person s ability to communicate, understand and respond to social demands. Individuals with ASD have a restricted range of interests and may also have sensory sensitivities which impact on their ability to participate in various environments. Families living with ASD experience significant stress in coping with the complex nature of this disorder in their children. Because there is no known cure for ASD, evidence-based treatments and supports are required for the lifetime of affected persons. Question 1 Making reference to the principles outlined in the Discussion Paper and given the state of the current human rights system in Ontario, do you have concern that the fulfillment of any of the following international human rights effectiveness factors and domestic administrative law requirements is not being maximized:. Independence (state human rights institutions are capable of acting independently of power brokers in society, particularly government). What are your concerns? What reforms do you feel would best address these concerns? ASO believes it is essential to the integrity of the OHRC that it become truly independent from the provincial government. We also believe that the OHRC can function far better if it stops confusing the need to remain independent from advocacy groups with the need to consult with and learn from the expertise held by NGO's. Currently, the independence of the OHRC could be called into question by the fact that the Ministry providing its funds and creating its Code is also responsible for defending the government against complaints raised through the OHRC: the Attorney General for Ontario. An arms-length funding agency should be established to fund both OHRC activities and to fund other parties 2
3 in the human rights system. This is discussed in more detail in our response to the question concerning reforms to the provincial government. In addition, the OHRC should not be frightened off from consulting with NGO's like ASO for fear of appearing to collaborate with advocacy groups. This is discussed in more detail in our response to the question concerning cooperation. Defined Jurisdiction (state human rights institutions are endowed with clearly defined mandates that in totality cover off all relevant internationally recognized protected rights and functions necessary for an effective human rights system). What are your concerns? What reforms do you feel would best address these concern ASO fully supports the existence of the OHRC and its mandate under s. 29 of the Code, However, its mandate and jurisdiction must be expanded to include greater capacity to oversee government legislation and policies affecting human rights. We would also like to see an increased mandate to collaborate with nongovernmental organizations like ASO to provide public education and to help influence government policy and laws that protect the human rights of vulnerable individuals like those with ASD. This is discussed in more detail in our response to the question concerning cooperation. An expanded mandate should be fully and appropriately funded by the provincial government. Cooperation (state human rights institutions are able and willing to establish and strengthen cooperative relations with other actors in the human rights system). What are your concerns? What reforms do you feel would best address these concerns? ASO is concerned that the OHRC has not sufficiently linked with our organization to establish a co-operative, sharing relationship. ASO is the provincial organization best placed to reach out to families of people with ASD and to individuals with ASD. We have the connections, the knowledge base, the expertise and the experience with issues involving persons with ASD in the province. Building a co-operative relationship with ASO would help the OHRC understand, educate and otherwise reach out to a significant population of disabled people and their families in Ontario. We could assist the OHRC in developing the expertise necessary to fulfill its mandate to develop and conduct programs of public education and research designed to eliminate discrimination and to examine and review legislation or government policies that could discriminate against persons with ASD. While ASO has responded to requests from the OHRC to submit papers on topics such as education, more could be done to benefit from each others expertise. The OHRC has been invited to attend ASO meetings and to work with us on establishing a co-operative relationship, but has not been able to act 3
4 on these invitations. Without this partnership, the OHRC will lack the depth of knowledge and expertise to be able to truly assist persons with ASD as they struggle to fight discrimination. Adequate Power (state human rights institutions are vested with adequate power to accomplish all mandated objectives and functions). What are your concerns? What reforms do you feel would best address these concerns? In ASO s experience, the OHRC does not have sufficient power or resources to conduct systemic reviews of government systems, such as the education system, for human rights compliance. Currently, complainants may spend great amounts of time and money, only to find that the remedy proposed by the HRTO is ignored, or that claims of hardship are accepted without question. The OHRC must be accepted by government and other institutions as a strong influence on policy decisions, to ensure that systemic remedies to human rights issues are available. Frequently, individual complaints reflect one person s experience, while systemic discrimination affects a number of others. The OHRC must have the power and the support to enforce decisions or settlements, whether the complaint is against an individual, a group, or the government itself. Accessibility (state human rights institutions are accessible to individuals and groups whose interests they are established to protect and promote). What are your concerns? What reforms do you feel would best address these concerns? Concerns have been raised about whether the OHRC s services are sufficiently attuned to the needs of individuals with ASD or their families. Addressing this concern could be done in part through a cooperative relationship with ASO. With public funding, ASO could help the process become more accessible, perhaps offering guidance for families and individuals working through the complaint process. ASO would like to see more effective communication from OHRC concerning their processes and powers, to ensure complainants fully understand the system. We also believe that support throughout the entire complaint process is vital, particularly for self-advocates. ASO believes the current role of the OHRC as a gatekeeper to the HRTO is an important one for efficient and accessible functioning. A large concern raised by our members is about the length of time the process takes. The average 11 month wait for an HRTO hearing is an unfair barrier to access and may discourage people from pursuing complaints. Another possible result of the lengthy process is that individuals may file a complaint before pursuing other remedies, to ensure they get in line : this may contribute to the OHRC s excessive workload. 4
5 The gatekeeping role of the OHRC should involve greater education efforts, such as informing the public about what can, and can not, be achieved through the OHRC and HRTO. Education about other possible venues, such as other rights tribunals, that are available and appropriate for individuals may reduce the process time, making the OHRC more accessible. ASO strongly recommends that the OHRC give complainants who have identified barriers to access (financial, communicative, familial, social) the means to achieve their goals of pursuing their complaint through the OHRC and OHRT. This could involve funding the participation of experts, such as psychologists, whose input is needed to reflect the impact of a disability. Changes to the system are needed to make it both more accessible, and to have it appear more accessible, to those who have suffered violations of their fundamental human rights. In order to fully understand the barriers to access, ASO recommends that the OHRC conduct a survey of the 121 cases involving individuals with ASD that are currently before the OHRT, to determine what barriers these individuals had to overcome to reach that stage in the process. ASO believes that the complexity of the human rights system itself may act as a barrier to individuals who are marginalized. Education is key. ASO could work in cooperation with OHRC to identify the main needs of individuals with ASD in the human rights system and identify what issues need to be taken into account to allow those individuals, or their families, equitable access to the human rights system. Most of these recommendations require that the HRC is afforded greater power and financial resources then it has currently. Operational Efficiency (state human rights institutions are efficient and effective in operation). What are your concerns? What reforms do you feel would best address these concerns? From the point of view of speedy adjudication of claims, the OHRC is clearly not sufficiently funded to operate efficiently and effectively. Lengthy processes decrease accessibility to the system, with both financial and other costs for all involved. The solution to the lengthy process is not to make it less complete, or to put in place barriers that discourage complainants from moving forward. Instead, funding is key: as the primary means by which human rights are protected and monitored in Ontario, the OHRC must be appropriately funded. Funding levels should reflect the importance and significance of protecting human rights from both private and governmental actions. Some complainants may turn to the OHRC with a mistaken view of what can be accomplished, adding unnecessarily to the OHRC s workload and decreasing its effectiveness. Stakeholders should be clearly and unambiguously informed about exactly what can and cannot be accomplished 5
6 through an OHRC complaint. The criteria for advancing a complaint to the HRTO must be clearly articulated. This would reduce inappropriate claims and set reasonable expectations for claimants, who might, with a fuller understanding of the system, choose another path for dealing with the issue. ASO recommends regularly bringing together all players in the human rights system (government, agencies, corporations, complainants, advocacy groups, etc.) to share information. This would offer a forum for groups such as ASO to share their expertise in disability issues in general and ASD in particular. Accountability (state human rights institutions are accountable to all stakeholders). What are your concerns? What reforms do you feel would best address these concerns? In ASO s view, the fundamental issue is that both stakeholders and accountability are not clearly defined terms in this context. Our members have told us that it is not clear to them, when submitting complaints, to whom OHRC is accountable, or what recourse a complainant has if they are dissatisfied with the OHRC s assessment of their case. For example, in the case of families of children with ASD, it is unclear what impact, if any, the winning or losing of their cases will actually have on the government of Ontario to change its policies, practices or funded services with regards to ASD. Nevertheless, the OHRC is in a position to be a voice for families who might otherwise not be heard publicly on their legitimate complaint: without the OHRC, individuals are left to be heard only when invited by ministry leaders or when they attract sufficient media attention. A brief plain-language document describing stakeholders and the meaning of accountability in relationship to OHRC must be made available. It should also include a clear explanation of what recourse a complainant or stakeholder has when challenges arise with respect to timelines or procedural matters. The administrative duty of fairness, balancing with the demands of procedural simplicity. What are your concerns? What reforms do you feel would best address these concerns? ASO has two primary concerns in this area: challenges to self-represented complainants, and delays and overly complicated procedures. With respect to delay, significant delays occur from the time of the filing of a complaint through the many stages to the actual hearing. Delays of many years are far too common. This is particularly troubling in situations where vulnerable children and adults are being denied essential services on the basis of having ASD. One of our members filed a complaint in By January 2003, after three different investigators had been unable to make the respondent reply to their requests for information, the case was closed. Needless to say, this parent of a child with ASD who had been denied a service was very frustrated. In order to address the problem of delay, it is vital that the OHRC and the provincial government respond by increasing access to the OHRC, not by 6
7 reducing access out of budgetary concerns. The OHRC needs to offer increased human resources and better screening for unfounded claims along with careful review for valid claims by skilled and knowledgeable staff. Current procedures, including the application forms, the mediation process and especially the HRTO hearing process, are complicated legal procedures from the standpoint of parents of children with ASD. For high-functioning persons with ASD making their own complaints, the process is overwhelming. It is difficult, sometimes impossible, to obtain legal representation for OHRC complaints and even HRTO hearings. Very few lawyers in Ontario offer any human rights expertise. Legal aid and legal aid clinics can provide some assistance, but only for those with very limited resources. The average, middle-income family must represent themselves or spend prohibitively large sums of money to hire a lawyer. One of our members complained that you really need a law degree to understand the paper work and that conference calls to clarify issues often involved talking about things I don t understand and the lawyers speaking in their own jargon. Respondents, in particular the provincial government or other institutional respondents, are represented by counsel, and the OHRC itself has their own counsel. It is the complainant, the one with the claim for discrimination, who often does not have counsel, thereby tipping the balance of power in the complaints process. The solution is for the government to fund more counsel with expertise in human rights law to assist complainants, through legal clinics, legal aid, or other means. Question 2 Below is a list of potential actors in a human rights system. Please identify the specific actors with regard to whom you wish to make comment. Please respond to the questions raised bearing in mind the contents of the Discussion Paper. State human rights institution(s). What should be the roles, responsibilities, and structures of state human rights institution(s) in Ontario? Are there reforms to the role, responsibilities, and structures of the OHRC and the Ontario Human Rights Tribunal that you feel would be beneficial for the Ontario s human rights system? If proposing change, what would be strengths and weaknesses of the proposed changes? ASO believes it is vital to the integrity of the human rights system in Ontario to have both an OHRC and an HRTO, both of which need to be independent, effective, and well funded. Both entities play important but separate roles in protecting the interests of some of society s most vulnerable members, including individuals with ASD. The OHRC is a vital player in the intake and processing of complaints as well as in its appearances before the HRTO, since it represents the broader interest of human rights and the upholding of the Code, not just the interests of individual complainants or the government or other respondents. The OHRC also plays an integral role in both educating the public and providing a human rights watchdog function over the provincial 7
8 government. ASO supports the ongoing existence of the OHRC as an independent, well-funded protector of human rights in the province. Funding for the OHRC should be increased to allow it to fulfill its mandate under s. 29 of the Code, particularly the functions of public education, research and review of government law and policies. The current under funding of the OHRC prevents it from fulfilling this mandate: the OHRC should not be limited by its lack of funding to few reports, little research and constantly catching up on a huge backlog of complaints. The OHRC is spread too thin. ASO feels strongly that the government of Ontario should not consider a model similar to that in B.C., which involves direct access to the Tribunal without a Commission. The direct access model, while perhaps seeming on the surface to be more fair, means that complainants like families of those with ASD have fewer options for discussion, possible settlement or for coordinated approaches to their cases, all of which are currently provided by the OHRC. Recently, the OHRC referred over 100 cases involving individuals with ASD to be heard together by the HRTO. Commission counsel fought alongside complainants counsel to have the HRTO accept the cases as a group. This important combining of cases would not likely have occurred without the OHRC and their counsel. We are also aware of situations where our families have been greatly assisted by Commission investigations or by the development of legal positions taken by Commission staff. Human rights complaints should not just be about vulnerable individuals pitted against the government. The existence of a body with the oversight for human rights like the OHRC is essential to the integrity of the system. The HRTO s role is to be an impartial arbiter and to make decisions on complaints after hearings. We understand they also play a role in mediation. However, the HRTO cannot advocate with or challenge the provincial government to keep its policies and laws in line with human rights principles. That would constitute a conflict of interest from an impartial body such as the HRTO. The HRTO cannot conduct research, issue reports or educate the public on human rights issues, all of which are important functions of the OHRC that must be retained. The Provincial Government. Are there reforms to the role of the Government and the Ministry of Attorney General (as the current Ministry responsible for Provincial human rights institutions) that you feel would be beneficial for Ontario s human rights system? Currently the Attorney General of Ontario (AGO) is the Ministry responsible for the OHR Code and for the funding of the OHRC and the HRTO. Counsel for the AGO also defend the Ontario government against complaints brought to the OHRC against Ministries and other provincial government institutions. At the very least this has the appearance to the public of a conflict of interest. An independent, arm s length government institution not charged with the 8
9 responsibility of defending the government against human rights complaints should be responsible for the funding of the OHRC and for its legislation. In addition, counsel for the AGO who are charged with the role of defending the provincial government in complaints to the OHRC should receive adequate human rights training. Many AGO counsel do not have the expertise necessary to participate in human rights cases and such expertise should be developed. Finally, the government should reform the process of making HRTO appointments. The appointments are political, with appointees who often have no expertise or experience in human rights issues. The tribunal members do not receive enough education about discrimination or about the various prohibited grounds such as disability. The process should become an open, transparent appointment process run by a committee made up of more than just government representatives. Administrative Tribunals that participate in Ontario s human rights system (For example, the Special Education Tribunal, Workplace Safety and Insurance Board, the Ontario Labour Relations Board, the Ontario Rental Housing Tribunal, labour arbitrators, etc.). What should be the roles of these types of bodies in the human rights system in Ontario? Are there reforms to the roles of these types of bodies that would benefit the human rights system in the Province? To avoid the OHRC being flooded by claims more appropriately handled by other tribunals and forums, a central entry point needs to be created to provide guidance on the appropriate forum, to determine what is a true human rights issue and what would better be handled otherwise. Educating the public regarding the human rights and functions of each tribunal/ board should be handled through a central intake system that could direct people to the correct forum. Other Government bodies that participate in Ontario s human rights system (For example, the Accessibility Directorate, the Women s Directorate, the Seniors Secretariat). What should be the roles of these types of bodies in the human rights system in Ontario? Are there reforms to the roles of these bodies that would benefit the human rights system in the Province and what would they be? A wealth of human rights-related information already exists through activities of other government bodies, but no mechanism exists for capitalizing on that information. For example, the Accessibility Directorate engaged hundreds of stakeholders in the area of disabilities to speak about challenges to Ontarians with Disabilities Act. They now have a wealth of information that should be shared with OHRC. A June 14, 2005 quote from the MCSS upon release of the changes to the act stated that: Meaningful, realistic standards will be developed collaboratively by members of the disability community, representatives of the broader public and private sectors, and government. The committees will submit 9
10 proposed standards to the government for adoption as regulations. The standards will include timelines for compliance, and the legislation provides for tough penalties for violators. An Accessibility Standards Advisory Council has also been identified, but it is not clear what relationship or level of mutual accountability there will be with OHRC, or who will implement the legislation as indicated above. One family described to ASO a clear case of discrimination, from a local business, which had monetary implications for their family. The OHRC had no back up from the legal system to require responses to the complaint from an unresponsive business owner. Non-Government Organizations that participate in Ontario s human rights system (For example, legal clinics, advocacy groups, private corporations). What should be the roles of these bodies in the human rights system in Ontario? Are there reforms to the roles of these organizations that would benefit the human rights system in the Province and what would they be? NGOs such as ASO are in an excellent position to provide information on specific disabilities and the impact of disorders such as ASD on Ontario families. They are often established groups who can speak with expertise about our province s most vulnerable citizens. Their voice ought to be heard whenever human rights matters related to the nature of a particular disability are brought to the attention of OHRC. Governments of other jurisdictions (such as municipal and federal governments, and the United Nations). What interaction and coordination should happen and would benefit the human rights system in the Province? How do we enhance the interaction and coordination between these participants to improve the human rights system in the province? Co-ordination and information sharing on key issues affecting people with ASD would be beneficial for the ASD population, as we face the same challenges for denial of services in each province and territory and often federally as well. 10
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