Independent Living
The Evolution of Support Services in Ontario
Independent Living is both a philosophy and a movement espousing choice and control in daily living for people with disabilities.
To understand the evolution of services we have to go back to 1967. Prior to this time, the options for individuals in need of attendant care were few:
- A chronic care institution or nursing home depending upon the level of need.
- Living with their families. That assumed two things; one that the individual had a family, and two, that the family could in fact provide the care needed.
- Living alone, or with family with assistance on a visitation basis from nurses and homemakers. That option assumed two things: that such a program existed in the community, and that the hours of availability (usually 9 to 5 Monday to Friday) were suitable.
In order to provide another option, the first group home was established in Toronto in 1967. It housed 61 people in a purpose-built facility and was funded under the Charitable Institutions Act. It rapidly filled to capacity and there was rarely a vacancy up to the late 1970s and early 1980s. Between 1967 and 1972 the limitations of this model were identified and documented:
- The size was viewed as too large to constitute a home.
- Personal space was viewed as inadequate for long-term residencies. Residents lived in single and double rooms with communal bathroom facilities. The common space was seen as too impersonal and used by too many people.
- Residents had no control over their individual finances. All income, including that from employment, had to be turned over to the facility, up to the per diem rate. They were then given the equivalent of about $77 per month in today’s terms to meet their personal needs. This was one of the regulations of the governing legislation.
- Many of the other legislated regulations of the home were viewed as restrictive and over-protective by consumers, service providers and advocates alike.
- The funding level allowable under this act was inadequate to provide the level of attendant care required by many people in need of an alternative to institutions.
By 1973 several alternatives had been developed, each in its own way striving to overcome some of the limitations of the original group home. These took two forms:
- A purpose-built facility housing 36 people with on-site workshop, recreational facilities, medical and nursing supervision and six family relief units (all designed to meet the needs of the multi-handicapped) was funded under the Mentally Retarded Persons Act. This Act enabled the provision of a high level of care. It quickly filled to capacity and, to this day, rarely has a vacancy.
- Several small group homes of 5 to 10 people became operational under the Charitable Institutions Act.
While the size of the smaller group homes enabled a more individual approach and a home-like environment, they still operated under the same legislative restraints as the original home, such as inadequate funding to provide more than a minimal level of attendant care and a lack of individual control over finances. At this point in time, the concept of a single self-contained unit as an appropriate housing option for physically disabled people in need of attendant care did not exist.
By 1975, a very different concept of how to overcome these problems slowly emerged. The primary features of this new concept were:
- The separation of the housing component from the service component. Housing was to be secured from normal housing channels whether they were federal, provincial, or municipal. Service costs were to remain at the provincial level with the Ministry of Community and Social Services. This separation was the key to the development of the apartment model. It also enabled a very flexible approach to be taken with the housing aspect. It could be owned or leased, purpose-built or renovated, or it could be available simply by mutual agreement with an existing organization whose function is to provide housing in general.
- That control over individual finances should be retained by the tenants of a project and that tenants assume financial responsibility for all conventional costs of living, but not for the costs of the services provided by the project.
- That professional health care staff were unnecessary and that the projects could be staffed by individuals trained on the job, and to a large degree by the people who lived there.
- That the target population would be those in need of attendant care whose only alternative was either a chronic care institution, nursing home, or another unsuitable environment.
This concept was adopted by four groups who were in the process of developing new alternatives. They were located in Toronto, Thunder Bay, Windsor and Ottawa. The Toronto project opened its doors in June of 1975 with no government funding. Agreements for the rent supplements of the apartments were reached relatively quickly. These had been leased from a private developer for a period of ten years. It was five months before the province announced that it would fund all four groups on a demonstration basis for a period of three years. Between 1976 and 1979 several significant developments occurred:
- The provincial government froze all funding for additional facilities for physically disabled adults under both the Charitable Institutions Act and the Mentally Retarded Persons Act.
- All four demonstration projects became operational, filled to capacity with a low turnover rate and proved that they could meet the needs of those who had previously been institutionalized. The Toronto and Ottawa projects, both operational in 1975, were developing long waiting lists of prospective tenants. One project submitted a proposal in 1978 for a second project (for which the housing had been arranged) to be available in late 1979. Technically, by early 1979 the demonstration funding period for both of these projects had expired and an on-going funding mechanism had to be found if they were to remain operational.
- Several new groups had formed and presented similar proposals with housing either in place or arranged. One group home had also opened in 1978 with the housing funded but operating with charitable dollars.
- Numerous advocacy groups, agencies and advisory bodies as well as consumer groups, were strongly persistent in advocating for expansion of the demonstration projects.
- In early 1979 a group of individuals who were in a rehabilitation facility and ready for discharge banded together. Steadfastly they claimed their right to live in the community and denied that chronic care was even an option. These people played a key role. The issues at hand were not lost in the maze of legislation or funding formulae because the focus remained on “real” people with known faces and names who were in crisis.
By now, the basic issue had become not one of the viability of such projects, but one of the on-going funding mechanism. Without reiterating all of the dealings that occurred in the provincial / municipal dispute over funding, all of this activity came to a head in late 1979 when the Province of Ontario announced it would proceed with the funding of several new projects. Ultimately the funding remained at the provincial level and became the Ministry of Community and Social Services “Support Services for Physically Disabled Adults Program”. During the years from 1980 to 1982 many changes occurred:
- All group homes, previously funded under the Charitable Institutions Act (with one exception), had their funding converted to the same mechanism as the original demonstration projects.
- A policy framework was developed in consultation with those non-profit corporations operating projects.
- Those originally wishing to start multi-purpose large facilities were given alternative funding if they decided to proceed with apartment projects along similar lines. Later in 1984 funding came under the same Act.
- Additional projects opened province-wide with the help of service clubs, housing groups, foundations and, most importantly, the consumers of the services themselves.
Looking from the outside, this evolution appears to have occurred relatively quickly. Those involved to bring it about might not perceive it that way. This evolution was the result of:
- People in need of attendant care who were committed to their right to live in the community and became active both politically and with the media.
- Pressure by a diversity of groups and individuals including advocates, agencies and advisory bodies.
- Clearly identified and well documented problems with the existing options bringing about the presentation of proposed new concepts and solutions.
- The demonstration of the depth of commitment through those projects which undertook to open their doors without funding in place.
- The acceptance by key politicians and senior civil servants of the need for change and their commitment to bringing about that change.
- Countless hours by volunteers.
People with disabilities, and all those committed to the Independent Living Philosophy, continue the socio-political advocacy for access, services and supports that will ensure people with disabilities are fully able to exercise their rights as citizens in Ontario.