Public policies, social programs and the laws that govern them often reflect the dominant approach of the era in which they are developed.[1] The values underlying the Social Inclusion Act and its accompanying draft regulations express a particular perspective on disability issues or models of disability. The same is true for the legislation and policies that preceded the Act. In this section, we provide a brief history of the various approaches to providing services and supports to people with intellectual disabilities that have been employed in Ontario. This historical perspective provides important context for our argument that service rights and mechanisms to enforce those rights must be included in the Social Inclusion Act framework. In addition, an historical understanding of the relationship between governments, service providers and people with intellectual disabilities informs the kinds of enforcement mechanisms that we propose later in the report.
A. Brief History of Ontario’s Approach to Providing Services and Supports to People with Intellectual Disabilities
1. The Pre-Institution Era
Prior to the introduction of institutions, there were virtually no government policies, services or supports specifically for people with intellectual disabilities in Ontario. People with intellectual disabilities and their families were viewed as objects of pity or charity. Typically, families were required to care for their child or adult family member at home. If families were unable to provide for all the needs of their loved-ones, communal support networks represented by friends and neighbours offered assistance. Local government councils could also be petitioned for financial aid.[2] People with intellectual disabilities who were left on their own often ended up in prisons, where conditions were crowded and unsanitary, and where some people with disabilities were treated worse than convicted criminals.[3]
Society’s treatment of people with intellectual disabilities can be captured by the common terminologies that were used to describe them, including “imbeciles”, “idiots”, the “feeble-minded” and “morons”.[4] The medical community restricted its examination of people with intellectual disabilities to the “degree of idiocy” suffered by the individual.[5] This language illustrates that people with intellectual disabilities were considered different than “normal” people, consequently it was acceptable to treat them differently. Such treatment was almost always accompanied by stereotypes about abilities (or lack thereof), and in particular, the assumption that people with disabilities were unable to lead independent lives.[6]
2. Institutionalized Care for People with Intellectual Disabilities
In 1839, Upper Canada passed legislation to formally permit the establishment of provincially funded institutions, entitled An Act to Authorize the Erection of an Asylum within this Province for the Reception of Insane or Lunatic Persons.[7] In 1876, Ontario opened its first large institution, the Ontario Asylum for Idiots, in Orillia.[8]
Initially, the concept of institutions was based on the notion that there was a better way to assist people with intellectual disabilities. Institutions were conceived as boarding houses, where people could go for short periods of time (typically no longer than five years), and be taught skills that would assist them to integrate back into the community and live independently.[9] Alternatively, institutions, like large hospitals, were places where people could go to have their disability “fixed”, as promoted by the medical model of disability. The medical model viewed disability as an abnormality or flaw that was located in the individual and sometimes could be treated or cured. Doctors urged parents to place their children in institutions, where they would be with “people like themselves”, who would better understand them, and be happier not having to face the difficulties of living in society. Institutions were paternalistically seen as places that would protect people with intellectual disabilities from the unintended consequences of industrialization, such as poverty, crime, poor working conditions, lack of adequate housing, disease and poor hygienic conditions.[10] It was felt that people with intellectual disabilities would be well cared for and protected. Given the paucity of services and supports available to people with disabilities and their families, publicly-funded institutions were often the only choice.
There were also less humanitarian reasons for the development of institutions. Eugenicists believed that people with intellectual disabilities, among others, contributed to social problems and unrest, and therefore should be isolated and eliminated from the general population. People with intellectual disabilities were blamed for social problems such as poverty, prostitution and the existence of slums. Tragically, many Canadians with intellectual disabilities were subject to forced birth control and sterilization.[11] Ontario was not immune from the influence of the eugenics movement. It is likely that forced sterilizations occurred, and there is evidence that people with intellectual disabilities were often placed in institutions during their child-bearing years, where men and women were segregated from one another.[12] Films produced by people with intellectual disabilities document the devastating effects of the eugenics movement. Not only were people with intellectual disabilities denied the basic human rights and freedoms of bearing children and having sexual relationships, they were also subjected to medical procedures without their knowledge or consent. Many people did not discover that they had been victims of the eugenics movement until decades after their release from institutions.[13]
Conditions in institutions were often appalling. ‘Inmates’ lived in dormitories with tens or hundreds of others, with no curtains on the windows and no privacy between beds. The doors were locked from the outside, and abuse among the inmates themselves was not uncommon. Typically there were no protections and no involvement from the staff at night.[14] Bathrooms afforded no privacy either; rows of open stalls without walls or doors were common.[15] People with intellectual disabilities were often forced to work without pay. Some ‘inmates’ even performed the same kinds of jobs that staff members were paid to do, such as work in the kitchen or hospital, or feeding other patients.[16] Documentaries by people with intellectual disabilities have exposed the lack of stimulation, fear of punishment and degrading treatment that characterized institutional life.[17]
Sexual, physical and emotional abuse of people with disabilities by staff were rampant in institutions. However, many who suffered abuse did not report it, as there was no way to do so. It is unlikely that abuse would have been reported even if there had been reporting mechanisms in place. ‘Inmates’ were extremely reluctant to speak out about the abuse they experienced for fear of punishment or negative repercussions.[18]
Institutions were deliberately built away from cities. Living in rural areas was justified as a way to provide fresh air and open spaces that would contribute to the over-all health and well-being of people with disabilities.[19] Today, it is recognized that building institutions far from cities served to segregate people with intellectual disabilities from society. Social isolation made it extremely difficult for ‘inmates’ to maintain relationships with family or friends, and meant that abuse and control of ‘inmates’ by institutional staff could not be threatened or exposed. At times parents were told that their son’s or daughter’s stay in an institution would be temporary, only to discover that their son or daughter could not be released without consent of a psychiatrist.[20] Locating institutions in rural areas also made it difficult for ‘inmates’ to escape. Those who did attempt escape were often caught, returned to the institution, and punished by being stripped of their clothing, soaked in cold water, or placed in a cell without heat or blankets.[21]
Unfortunately, the lack of developmental services and supports outside of institutions often meant that large institutions like the Ontario Asylum for Idiots continued to grow. Although its initial capacity was 150, demand exceeded this number and additional land was purchased to expand the facility. In 1961, Huronia Regional Centre, as the Ontario Asylum was renamed, housed 2,800 people with intellectual disabilities.[22] Huronia Regional Centre was not the only large institution run by the province of Ontario. In the 1970s, at the height of the institutional era, there were approximately 30 large and small institutions for people with intellectual disabilities in Ontario.[23]
There were several reasons for continued demand for space in institutions. There was a fear that people with disabilities were living longer lives. The greater the number of people with intellectual disabilities, the greater the threat to society would be, hence they needed to be removed from society and placed in institutions.[24] Alternatively, some parents were convinced by the medical community that institutionalizing their son or daughter would be beneficial to the child and the rest of the family. Institutionalizing a child meant that the costs and responsibility of caring for him or her would be transferred to the state instead of being borne by the family. Because an intellectual disability was seen as a medical condition, it made sense to place a person in a specialized facility. Indeed, many of the institutions changed their names from asylums to hospitals to signify this approach, and many were staffed by health care practitioners.[25] People with intellectual disabilities were no longer called ‘inmates’, but were now ‘patients’, further entrenching the medical model of disability. Typically, living in an institution meant trading control over one’s own life and decisions for lifelong “care”.
Institutions were eventually exposed as places of extreme cruelty, abuse and inhumane treatment, and consequently began being shut down, with the last large institution in Ontario closing on March 31, 2009. Several factors contributed to the closure of large institutions, including lack of funding, insufficient demonstration of rehabilitation, recognition that drugs were being overused to control behaviour, gradual social acceptance that people with disabilities were not dangerous or deviant, and the application of values of equality and human rights to disability issues. Public awareness of the extremely poor living conditions within institutions also played a role. Perhaps most significantly, the adoption of community living as a philosophy offered an alternative to institutionalized care. Supporters of community living tirelessly drew attention to the atrocious conditions in institutions, and demonstrated that people with intellectual disabilities could live and participate in the community with appropriate services and supports.[26]
3. The Developmental Services Act
In 1974 Ontario passed the Developmental Services Act. The Act still governs services for people with intellectual disabilities today. Generally, the Ministry of Community and Social Services, the ministry responsible for the Developmental Services Act, does not provide any direct services or supports, but rather provides funding, policy direction and oversight to community-based agencies, which in turn provide direct services to people with disabilities and/or their families.[27] Regulation 272 pursuant to the Act governs the operation of group homes and other living environments.[28]
During the era in which the Developmental Services Act was introduced, the social model of disability gained support from the community living movement, as well as other equity-seeking groups, such as those who experienced racism, sexism, and homophobia.[29] Unlike the medical model and eugenics movement, the social model does not view disability simply as a deficit or flaw inherent in the individual. The social model focuses attention on the physical and social conditions that erect barriers and prevent people with disabilities from accessing goods, services, rights and entitlements, and the lack of adequate supports to enable people with disabilities to be fully included in society.
The Developmental Services Act made some attempts to respond to the social model of disability. For example, the Act provided for public funding of community-based services and supports for people with intellectual disabilities.[30] Such services include group homes, individual living arrangements in which people with disabilities received support services, sheltered workshops, day programs and life skills training programs. The funding of community-based services acknowledged that many people with intellectual disabilities can live and participate in their communities with appropriate support. The Act also acknowledged that many people with intellectual disabilities live at home and require supports in that setting.[31]
Despite these attempts, the Developmental Services Act fails to realize or acknowledge some of the most important tenets of the community living movement, including full participation, inclusion in society, equality, acceptance and citizenship for people with intellectual disabilities.[32] Equally, the Act fails to realize the vision of the People First movement, which is the promotion of equality, and the ability of all people with intellectual disabilities to exercise autonomy, make life decisions, and self-advocate.[33] Practically, the developmental services provided for under the Act often constrain rather than promote inclusion for people with intellectual disabilities. Many of the funding programs pursuant to the Act include strict eligibility criteria, a cumbersome application process, long wait lists, and inadequate funding. In addition, the Act does not provide for robust enforcement mechanisms that people with disabilities can access if they have complaints or concerns about funding or services. Often, barriers are created due to limited collaboration or co-ordination between the Ministry of Community and Social Services and other government ministries with which people with intellectual disabilities may interact.[34]
A stark example of the failure of the Developmental Services Act to truly enable people with intellectual disabilities to be included in society is the fact that under the Act, large institutions continued to exist and be operated by the province of Ontario. These institutions were funded to provide supervised residential programs as well as day and leisure programs for people who required specialized care. As a result, people with intellectual disabilities continued to be segregated from society and be victims of abuse and degrading treatment. Such institutions were in operation until March 31, 2009, when the last large institution in Ontario was closed.[35]
4. Deinstitutionalization and the Social Inclusion Act
In 2008, Ontario passed the Services and Supports to Promote the Social Inclusion of Persons with Developmental Disabilities Act. Until very recently the government had not set a proclamation date for the Act, and it was unknown when the Act would come into effect. Various proclamation dates have now been set, and the Act is coming into effect in three stages, from July 1, 2010 until July 1, 2011. On July 1, 2011 the Act will replace the 36-year old Developmental Services Act.[36]
The Act marks a shift in the developmental services sector away from institutionalized care and towards a system of services and supports that are intended to enable people with intellectual disabilities to live and participate fully in communities of their choosing. This represents a paradigm shift from professional, controlled services in segregated institutions to services that underpin community participation.[37] As part of its strategy to transform the way in which publicly-funded services are delivered to people with intellectual disabilities, the Ministry of Community and Social Services promises that this new legislation will build a modern, fair and sustainable developmental services system that will give people with intellectual disabilities more independence and choice and foster their full inclusion in society. [38] Indeed, this objective is reflected in the title of the Act.
The focus of the Social Inclusion Act is on the delivery of community-based developmental services and supports and the provision of direct funding to enable people with disabilities and/or their families to purchase and direct services and supports of their choosing. Under the Act people with disabilities will either receive developmental services through community-based agencies, purchase services with direct funding, or utilize a combination of these methods. The Act sets out a variety of residential settings for people with intellectual disabilities, including group homes in which several people with intellectual disabilities live and receive live-in support from a service provider; host family residences, in which people with disabilities live with a host family who provides support to them; and supported independent living residences, in which people with disabilities live independently with supports as needed.[39] The kinds of services and supports that people may receive under the Act include support for activities of daily living, such as making meals, getting dressed, personal hygiene, managing money and using transportation; supports for community participation, such as work, volunteer or social activities; and professional services, such as those of a psychologist, social worker or speech language pathologist.[40] In addition, people are also eligible to receive person-directed planning, which assists a person to identify a life-plan and the services and supports needed to implement the plan.[41]
The Act makes some positive changes to the developmental services sector, such as eliminating the operation of large institutions, providing for direct funding to enable people with disabilities and/or their families to exercise more choice and control over the services they receive, and funding person-directed planning to assist people with disabilities to create life-plans. However, the Act fails to truly transform the developmental services sector, and instead maintains a system of services that reflects elements of both the medical and social models of disability. For example, the Act defines developmental disabilities as, “prescribed significant limitations in cognitive functioning and adaptive functioning that originated before the person was 18, are likely to be life-long in nature, and affect major areas of life activity.”[42] In order to be eligible for services or funding under the Act, a person must demonstrate that she or he meets this definition by providing an assessment from a pre-determined list of medical and health care professionals.[43] As a result, the medical model continues to dominate the legal definition of intellectual disability, and the power to determine who is eligible to receive services or funding remains in the hands of medical professionals.
Another troubling example is the manner in which the Act treats the basic principle that each person is entitled to make his or her own life decisions. Several provisions of one of the draft regulations pursuant to the Act permit service providers to share information about an individual’s service plan, any allegations of abuse, or plans concerning restraints with the individual themself or a person acting on the individual’s behalf.[44] The service provider does not need permission from the person with the disability before sharing this information with a third party, and consequently, these provisions may remove some autonomy and decision-making power from people who receive developmental services. Underlying these provisions are the discriminatory assumptions that all people with intellectual disabilities cannot understand information on their own; that they are not able to recognize when they may need assistance or support; and that others may be in a better position to determine what is in their best interests.
Perhaps most troubling is the fact that the Act fails to include any rights whatsoever for people with disabilities when they receive developmental services and supports. A system that truly supports the full participation, dignity and citizenship of people with intellectual disabilities must enshrine substantive rights in legislation. The provision of rights, as well as mechanisms to enforce those rights, would enable people with disabilities to become active consumers of services that are accountable to them, rather than remaining passive recipients of care. The inclusion of rights in the Social Inclusion Act framework is necessary for true transformation of the developmental services sector.
B. Enforcement Mechanisms under the Social Inclusion Act
Incorporating rights for people with intellectual disabilities in the Social Inclusion Act framework is one means of ensuring that services are appropriate and spending is accountable. However, rather than utilizing this approach, the Social Inclusion Act and accompanying regulations establish minimum standards with which service providers and community agencies that administer funding or process applications must comply to ensure quality assurance.[45] Enforcement of these minimum standards occurs predominantly via government oversight, through mandatory reporting requirements, inspections, orders and government take-overs of agencies.
The minimum standards with which agencies must comply will be determined by a regulation on quality assurance measures, and possibly by other regulations and policy directives.[46] To date, the government of Ontario has not yet passed this regulation, but has released a Draft Regulation on Quality Assurance Measures (“Draft Regulation”). The Draft Regulation stipulates that every service agency must address the promotion of social inclusion, individual choice and independence; the development of individual support plans; management of and assistance with finances; health promotion; abuse prevention and reporting; confidentiality and privacy; and a variety of safety issues.[47] Service providers must create policies and procedures to address most of these items and in some cases must review these policies and procedures with people who receive services.[48]
Service providers are required to report to the Minister of Community and Social Services when requested to do so, or when required to do so by regulation.[49] To date, neither of the draft regulations that the government has released stipulate reporting requirements.
Directors appointed by the Minister of Community and Social Services may appoint inspectors who may carry out inspections to determine whether a service agency, application entity or funding entity is complying with the minimum standards set out in the Act, regulations and policy directives.[50] Inspectors may require the production of relevant documents, question any person present regarding the inspection, and examine the condition of the premises and its equipment. Inspectors may be accompanied by experts to assist in the conduct of the inspection.[51]
Directors may order service providers and community agencies that administer funding or process applications to comply with the Act, regulations and policy directives. Orders may require agencies either to do or refrain from doing anything to achieve compliance, or to submit and implement a plan for achieving compliance within a specified period of time. Prior to issuing an order, the Director must give the agency notice, and the agency has the right to make submissions to the Director regarding the proposed order. Failure to comply with an order triggers possible termination of a funding agreement or revocation of an agency’s designated power to administer funds or process applications.[52]
Upon notice to an agency, the Minister may appoint a person to take over and manage the affairs of the agency with respect to services and supports for people with intellectual disabilities. Grounds for such a take-over include misappropriation of funding, gross negligence in the management of funding, or providing services in a manner that constitutes an immediate threat to the health, safety or well-being of people with intellectual disabilities. Service providers that receive notice of the appointment of a manager are entitled to request a review of this order.[53] Managers have all the powers of the agency’s board of directors, and may immediately occupy and operate the agency. Without the consent of the agency, managers cannot occupy or operate agencies for more than two years.[54]
Section 26 of the Act requires service agencies to have written procedures for initiating complaints to the agency and for how the agency will deal with such complaints. Section 26 also requires service agencies to ensure that these written procedures comply with the regulations. Section 38(p) of the Act provides that the Lieutenant Governor in Council may make regulations governing practices and procedures relating to complaints processes, however as of the date of this paper, no such regulations have been released.
Although the Social Inclusion Act is not yet in effect, many Ontario service providers have complaints procedures already in place. Often, people who wish to make complaints will be encouraged to raise their concern with the individual support person against whom the complaint lies. If this does not resolve the issue, the person may make the complaint to the worker’s manager or supervisor. If the complaint remains unresolved, the next step is usually to address the complaint to the executive director or Board of Directors.
C. Challenges Specific to the Developmental Services Sector
The shift away from a medical model to a social model of disability has brought with it a growing recognition that people with intellectual disabilities are entitled to live in communities of their choosing, participate as equal citizens in community life, and receive services that support community living for the greatest number of people possible. Despite this recognition, there continue to be barriers that impede the realization of these entitlements. Two such barriers include discriminatory attitudes towards people with disabilities and difficulty establishing a culture in which service providers and community members respect the right of people with disabilities to self-determination.[55]
1. Barriers to Autonomous Decision-Making
Inclusion: being part of the mainstream is something most of us take for granted. We go to work, look after our families, visit our GP, use transport and go to the swimming pool or cinema. Inclusion means enabling people with learning disabilities to do those ordinary things, make use of mainstream services and be fully included in the local community.[56]
Some of the most significant barriers to the realization of full inclusion and citizenship for persons with intellectual disabilities are the pervasive negative stereotypes and discriminatory attitudes they face. People with intellectual disabilities continue to be seen as objects of pity, who need care or protection. They are not considered adults who are fully capable of living independently and making their own choices about every-day matters in their lives.
Stakeholders with disabilities repeatedly told us that they knew they had the right to make their own choices about how to live their lives, but others stood in their way of doing so. Stakeholders identified every-day decisions that persons with intellectual disabilities are often prevented from exercising, such as having choice over where to live and with whom; what to eat; where to go on social or other outings; how to spend their time; and who their support worker should be. Choices like these are critical to independence and self-determination, yet they are being denied to people with intellectual disabilities on a daily basis. Instead of having choice over what to eat, some people with disabilities are forced to eat whatever is cooked for them or the same meal every day for years. Instead of having choice over where to go on outings, some people with disabilities are not permitted to go anywhere unsupervised because it is considered unsafe. Instead of choosing how to spend their free time, some people with disabilities are forced to participate in day programs they dislike because it is more convenient for staff to have everyone in the same place. And instead of choosing a support worker with whom they feel comfortable and safe, collective agreements and organizational bureaucracy force many people with disabilities to be supported by a worker who is assigned to them.
Often the denial of such entitlements occurs not because service providers, family members and others are ill-intentioned, but because there remain paternalistic attitudes towards people with disabilities, leading to persons with disabilities being treated like children rather than adults. Too often service providers, family members, guardians and others who want to help those with intellectual disabilities believe they know what is best for the person, and do not allow the person to make his or her own choices or fail to consult with the person when making a decision on his or her behalf. Denying people the right to make their own life choices usurps independent decision-making. People with disabilities are denied the opportunity to gain decision-making skills, make mistakes and learn from those mistakes, learn self-advocacy skills, and assert their rights.[57]
Linked with the removal of autonomy over one’s life choices is the issue of decision-making capacity. Service providers, family members, advocates, administrative tribunals and others may assume that a person lacks capacity to make his or her own decisions based solely on the fact that he or she has an intellectual disability, requires support, or receives developmental services. Such an approach is evident in provisions of the Social Inclusion Act, which assign decision-making power in particular circumstances to the individual or a person acting on their behalf.
In law, there is a presumption that adults are capable of making their own life decisions.[58] Capacity is both issue-specific and dynamic. A person can be capable to make one kind of decision, but not another. A person may not be capable at one point in time, but may become capable at another point in time. It is important that families, support workers, group home staff, medical practitioners and others receive specific training on the law regarding capacity. Such training would assist in reducing the number of situations in which others make decisions for people with intellectual disabilities, thereby addressing one of the barriers to autonomous decision-making.
In addition to training on the law regarding capacity, people must also be trained to experiment with, and use, alternate forms of communication. Far too often, people who are non-verbal are assumed to lack capacity simply because they do not speak. However, research has demonstrated that using creative ways to communicate with a person with an intellectual disability can enable the person to make independent and autonomous decisions.[59] Employing creative and alternate forms of communication builds capacity and skills, and allows information to be communicated to the person with an intellectual disability to assist him or her in making his or her own decisions.[60]
2. Fear of Abuse, Retaliation and Reprisal
Due to the nature of the services and supports that some people require and the environments in which these services are delivered, many people with disabilities fear being abused, threatened or retaliated against if they raise concerns or make complaints about services. Depending on their needs, some people with intellectual disabilities rely on developmental services and supports for assistance with daily activities such as eating, dressing, bathing, toileting, managing finances, using public transportation or navigating complex bureaucracies of social assistance systems. This dependence leaves people with disabilities vulnerable; they must work hard to maintain good relationships with support workers, family members and others on whom they rely in order to ensure that they continue to receive support and their basic needs are met. Making a complaint about a support worker or raising a concern about services may threaten or sever these relationships, and this can have disastrous impacts for the person with the disability.[61]
Indeed, fear of retaliation or reprisal was cited by stakeholders with disabilities as a significant barrier preventing people from raising concerns or making complaints about developmental services. Stakeholders described situations in which people with disabilities who made complaints were reprimanded or harmed by their support worker. In other cases support workers threatened to cut off a person’s Ontario Disability Support Program benefits or removed privileges like watching television or attending outings. Stakeholders noted that when a culture of reprisal exists, people will be reluctant to raise concerns even if they themselves have not been the victim of a reprisal or retaliation.
Another barrier raised by stakeholders with disabilities was a culture of impunity that exists within some service agencies. Several stakeholders who had made complaints about services or a particular support worker stated that their complaint was not addressed by the service provider and no changes were made. Failure to appropriately address complaints can create a culture of impunity, leaving people with disabilities even more vulnerable to mistreatment. Another problematic practice that stakeholders cited was a tendency for service providers to require people to raise their complaints with the particular support worker or individual against whom the complaint was directed. Again, fear of jeopardizing the relationship or suffering reprisal means that many people with disabilities remain silent. Some people with disabilities will require assistance from their support worker to complete a written complaint form. In some cases stakeholders reported that support workers refused to complete the complaint form, while in other cases people with disabilities did not feel comfortable asking workers to perform this task. Many people with intellectual disabilities will require support and assistance to make a complaint or raise a concern about services. It is clear, however, that this support must be independent from the service provider in order to be useful.
3. Need for Appropriate Supports
In order for services and supports to be effective, they must be individually tailored to meet the specific needs of each person with a disability. This cannot be a case of one size fits all, given the broad diversity of abilities and needs among people with intellectual disabilities. For example, some people with intellectual disabilities do not speak. They may use Bliss Boards or electronic equipment to communicate. Service providers and others who interact with the person must know how to use these kinds of alternate communication devices in order to be able to provide appropriate services and supports. For some people with intellectual disabilities who do not speak, sometimes what is required of a support person is careful listening to sounds and spending time learning the cues and communication techniques that the individual employs. Indeed, new technologies are being introduced every day, which can strengthen the capacity for communication with people with disabilities who are non-verbal.[62] Like services, enforcement mechanisms must be designed to take into account the need for appropriate supports in order to be effective.
One of the major challenges in providing appropriate services and supports is funding. Government fiscal policies are fickle, and often change when governments do. Even if a new government is elected, there is certainly no guarantee that a prior government’s policies will be changed or implemented. This raises the issue of equality of services available to people with intellectual disabilities, and whether there should be an entitlement to developmental supports and services.[63] Such an entitlement would help to make community living a reality and not a chimera.
4. Absence of Enforceable Rights
As discussed earlier, the Social Inclusion Act and accompanying draft regulations do not establish any substantive rights for people with intellectual disabilities when they receive developmental services. Stakeholders with disabilities consistently stated that the government’s failure to include rights in the Social Inclusion Act is one of the legislation’s most significant shortcomings. Without fail, stakeholders expressed the desire to exercise greater autonomy and control over their lives. However in order to know what choices they can make, they must know what choices they have a right to make. Currently, there are no federal or provincial laws that address this issue or provide rights for people with intellectual disabilities when they receive developmental services and supports.
Including rights in the Social Inclusion Act framework is important for several reasons. Symbolically, it demonstrates that the humanity and dignity of people with intellectual disabilities is not merely recognized in words, but in substantive rights that people can use to improve the quality of their daily lives. Practically, including rights in the legislation is the first step towards creating a culture of rights within the developmental services sector, thereby increasing the possibility that people with disabilities will have more autonomy, control and self-determination over their lives. Moreover, the first step to enforcing service rights is to enshrine them in legislation. Another compelling reason for the inclusion of rights in the legislation is to ensure that people with disabilities and service providers have similar expectations and standards. Currently, there are service providers across Ontario who have recognized the need to create rights for people who receive developmental services, and who have taken the initiative to develop statements, charters or bills of rights that apply to the services they provide. Some service providers have worked with people with intellectual disabilities to develop these rights documents.[64] While these efforts are laudable, they are not a substitute for including rights in legislation. The voluntary adoption of rights statements by some service providers means that the practice is not uniform across the province. As a result, some people with disabilities benefit from having service rights, while others do not. This is hardly fair or consistent with recognizing the inherent dignity of all people with disabilities. Adopting rights in legislation would ensure that these rights apply to everyone who receives developmental services, regardless of which agency or support worker provides the service. Similarly, there is no uniformity in the ways in which these rights are enforced. Some service providers have detailed complaint procedures with built in supports, while others do not. Equally, the kinds of rights that are provided through these initiatives vary from one service provider to another. Donato Tarulli, Christine Tardif, Dorothy Griffiths, et. al. explain that:
In the absence of clear guidelines for service providers regarding individual rights, each service staff member becomes, de facto, a policy maker. Under such circumstances, clearly, the rights of individuals would be inconsistently understood, and measures to protect them inconsistently applied. In short, certain rights might be respected at certain times and at other times restricted, depending on which staff member was at hand. Understandably, the spectre of this type of inconsistent treatment creates an environment in which it is very difficult for people to become empowered to take responsibility for their own lives.[65]
The inclusion of rights in legislation would provide a degree of uniformity that is presently lacking in the developmental services sector.
Some claim that there is no need to include rights in the Social Inclusion Act because people with disabilities already have rights under the Canadian Charter of Rights and Freedoms (“Charter”) and Ontario’s Human Rights Code. This claim is misguided. While the Charter and the Human Rights Code guarantee fundamental rights, freedoms and protection from discrimination to all, including people with intellectual disabilities, they do not address the unique needs and circumstances of people with intellectual disabilities when they receive developmental services and supports. For example, one of ARCH’s clients reported that she was having problems in the group home where she lived. She had been isolated from her peers and her family expressed concern that she was being overly medicated, as she was no longer able to participate in family activities that she once enjoyed. She developed kidney stones from her medication. Since moving into the group home, she had gained a significant amount of weight, was generally unwell, and was forced to wear diapers. While the Charter and the Human Rights Code would protect this woman from discrimination, neither law addresses the specific concerns she had about living in her group home. Neither law provides her with rights related to the quality and types of services and supports she needed or was entitled to. Therefore, neither the Charter nor the Human Rights Code provide legal protections applicable to this woman’s situation and neither law provides a mechanism for her to have her concerns addressed.
Rights must be tailored to the unique circumstances of the developmental services sector. The purpose of this paper is not to explore or propose the content of a set of rights. However, at minimum, developmental service rights should include:
· Right to live free from discrimination, harassment, abuse and neglect;
· Right to be provided services and supports in a manner that recognizes the person’s individuality and responds to the person’s needs and preferences, including preferences based on ethnic, spiritual, linguistic, familial, gender and cultural factors;
· Freedom of choice regarding activities of daily living, including decisions about food, clothing, personal appearance and participation in activities;
· Right to be informed in writing (or other accessible method) of programs and services and the laws, policies and complaint procedures that govern them;
· Freedom of choice regarding which services and supports to access;
· Right to enjoy personal privacy, including expectations of daily living such as the right to have private telephone conversations and the right to receive visitors of the person’s choosing;
· Right to be free from confinement or restraint, except as provided for by the Act and regulations;
· Right to have personal decisions respected;
· Right to receive information about these rights in plain language and an accessible format;
· Right to raise concerns or recommend changes and complain about services and supports without interference, fear of reprisal or retaliation;
· Right to effective ways to enforce these rights, and a right to receive information about these enforcement mechanisms;
· Right to access or be referred to advocacy support services or legal services for appropriate representation;
Including rights in legislation is a necessary step, without which it is not possible to create robust enforcement mechanisms that ensure that developmental services are accountable to all recipients.
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