This Chapter will illustrate the application of the Framework through consideration of a current issue in the law as it affects persons with disabilities: the legal framework through which persons with disabilities receive supports in the community for needs related to activities of daily living, such as bathing, grooming, meals or taking of medication. Such services are sometimes referred to as “attendant services”.
This issue was chosen because although it is vital to the well-being of many persons with disabilities and is a recurrent topic of policy concern, the law in this area is under-examined. It is an area of the law that connects in a fundamental way to many of the principles that have been identified. It also illustrates a number of the key themes in this area of the law, including the “implementation gap”.
The intent of this illustration is not to provide a comprehensive description of this area of the law or to propose specific reform initiatives. Rather, the aim is to reflect on it in light of the principles and considerations that have been identified in this Report, and where possible, to discover some concerns and general directions for reform that arise from the application of these principles and considerations, with the intent to provide some foundation for further research and reform initiatives.
The evaluation is based on a review of the legislation, caselaw, government documents and relevant social science research.
Because this is not an area that has been subject to intensive scrutiny, there are a number of aspects where information is lacking, and further research is required to make a thorough assessment of the impact of the law on persons with disabilities. Should a thorough evaluation of the law be undertaken, further research on the implementation and effects of the law would be beneficial, and consultation with service providers, persons with disabilities and the groups that represent or advocate for them would be necessary to provide a more thorough evaluation of how this area of the law may affect persons with disabilities.
The law in this area affects both younger and older persons with disabilities, although the circumstances of the two groups tend to be somewhat different, as is briefly highlighted in the following section. The LCO’s sister project on the law as it affects older persons examined this area of the law from the perspective of older persons who are frail or who have disabilities. This Chapter will focus on the experiences of younger adults with disabilities. (This Chapter will not examine the legal framework for community supports for children. While an important area for review, it raises separate issues which would benefit from a more lengthy examination than would be possible within the scope of this Chapter.) The intent of these separate examinations is not to deny the areas of commonality between these two groups – indeed, there are several. However, it highlights, as has been emphasized throughout this Report, the importance of paying close attention to diversity within the experience of disability, to the impact of the life course on the experience of disability, and to particular contexts within the experience of disability. It is within this kind of close examination that the principles take on meaning and the Framework allows us to evaluate laws, policies and practices.
There are many types of community support services that are vital to the lives of persons with disabilities. This Chapter focuses on services related to activities of daily living under the Home Care and Community Services Act (HCCSA) and the Ministry of Community and Social Services Act (MCCSA), while recognizing that this is one small (although vital) piece of a broader spectrum of services. It refers only briefly to the more recent Social Inclusion Act. Many persons with disabilities will be arranging and receiving a range of services, often from a number of different programs and service providers, and this will affect their experiences related to attendant services. That is, it may be somewhat artificial to examine this issue in isolation from a consideration of other types of community supports, and it would be important, in a fuller examination, to consider in-depth how attendant services are related to other supports and services.
1. The Importance of Community Support Services
The United Nations Convention on the Rights of Persons with Disabilities (CRPD) identifies the fundamental importance of community support services in enabling persons with disabilities to live in and participate in their communities, and the central role that governments play in ensuring access to such supports. The CRPD provides in Article 19 that:
States Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:
(b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community….
Supports in the community for tasks related to activities of daily living are essential for some persons with disabilities to maintain the ability to live in the community. A 2002 analysis of the continuum of care for adults with physical disabilities based on comprehensive consultations with stakeholders, individuals and informal caregivers concluded, “Self-managed attendant services were considered to be ‘the most important of all the services’”, despite limited access across the country, because of their close connection to autonomy and community inclusion.
Without such services, the only option may be some form of institutionalized living. Institutionalized living is not only almost always a much less preferable option for individuals, reducing autonomy and social inclusion, it is much more expensive. Therefore, governments, including the government of Ontario, have invested in various types of community supports. Ontario’s Auditor General has noted,
The Ministry has recognized the dual benefit of enhancing home care services. Having people receive care in their homes whenever possible not only means better quality of life for the patient, it is also far more cost effective than housing a patient in a hospital, long-term-care facility, or other institutional setting to receive care. One CCAC we spoke to informed us that, for instance, personal support services can enable individuals who have moderate risks/needs to continue living independently in their homes. Not having these services could lead to deterioration in a client’s condition that could result in hospitalization or institutionalization.
Access to such personal services can be essential to all aspects of participating in and being included by the community – to obtaining training and education, holding down a job, raising a family and engaging in civic or community activities. Access to community support services therefore has ramifications for all aspects of the lives of those persons with disabilities who require them.
Supports may be provided informally, by family or friends. However, the needs of some persons with disabilities may exceed the capacity of family or friends to provide them, or some may not have sufficient networks to provide them. Further, sole reliance on family and friends may limit the ability of persons with disabilities to live independently and to make normal life transitions, such as living separately from parents. Finally, lack of formal supports may create intense pressure on family and friends providing informal supports. Where insufficient formal supports are provided, informal networks may collapse under the strain:
Traditional family roles are under stress, both health wise and financially and family supports will decline over time as the population ages. The lack of Attendant Services funding will mean that dependent adults remain with family well beyond the family’s ability to humanly, physically and financially cope – unable to transfer, living [in] inaccessible environments with inappropriate assistive devices, and then the family support dies.
2. Home Care and Attendant Services Supports
Both younger and older persons who have disabilities may need supports in the community. Because of the substantial numbers of older adults now needing supports to age in place, demographic trends that indicate a growing need in this respect, and the already acute pressures on long-term care and hospital systems, the needs of older adults who are frail or disabled have tended to receive more public attention in discussions of this issue, but the needs are equally acute for younger adults with disabilities. The needs of the two groups may differ somewhat, and it is important that systems have sufficient flexibility to address different needs.
Home care programs were originally established to provide care for people with long-term chronic illnesses, and most clients were over age 65. That is changing. Home care programs now provide services for people in all age groups with a much wider range of needs. But home care programs that were designed for the elderly may not be flexible enough to meet the…needs of people of all ages who have a disability…For example, unlike seniors who use home and community care to maintain their independence, people with disabilities need services that help them participate in the workplace and they want more control over their services.…
Older persons who are frail or have disabilities and require supports to age in the community have generally been provided with these supports through an “agency-based care model”, in which services are provided by staff or contractors of care provider organizations, and activities are directed through those agencies. In Ontario such services are mainly provided through Community Care Access Centres (CCACs) under the legislative scheme set out in the HCCSA. These services may include assistance with personal tasks such as bathing and grooming, homemaking services such as meal preparation and laundry, or other services such as caregiver supports or transportation. These services are generally referred to as “home care”.
While some younger adults with disabilities do access services through the home care (or agency care) model, the preferred type of service is often an “attendant services” model based on the independent living philosophy, in which the individual is able to direct their own care. Agency care approaches may be seen by persons with disabilities as being less consistent with values of independence, empowerment and security.
[I]ndividuals [with disabilities] do not like the more formal medical model of care. They consider it to be the equivalent of institutional care in another setting. People with disabilities want to maximize their independence and take control of their lives, their health and their bodies. They want to be able to train their own care attendants to their own specific and particular needs, and to direct their own care…People with disabilities find the rules and regulations of the formal care system to be too medically oriented and inflexible.
The attendant services model of community service supports has its roots in the independent living movement for persons with disabilities:
Attendant Services evolved out of the desire and the need of persons with disabilities to lead independent lives. It is a unique model which enables people with disabilities to direct their own services in the community. Before the advent of attendant services, most people with physical mobility disabilities would have remained in chronic-care hospitals, lived in institutions, or been cared for by family members long after the age when most non-disabled people would choose to live independently.