Previous ·  Table of Contents · Next

SIX

Independent Living

"The vast majority if not all of physically handicapped people (including many elderly people) can achieve a maximum of their potential development and effectiveness within society when they can live in surroundings of their own choosing with adequate home support services. Their well-being can enhance their contributions to the community both on personal and humanitarian levels and on employment and consumer activity levels.”

“If there is to be further progress toward the goal of effectively equal participation in community life for every citizen, the conditions and prospects of life for mentally retarded people must be improved vastly, immediately and with sufficient humanity to overcome the burdens the past has imposed. Every person must have the right to a fully human life. For mentally retarded people this means that the broader community must truly help those in need of help, create a place in the community for those who are now imprisoned in the back wards, and cease to impede the full social integration of those who only real disability is the label “mentally retarded”. Human beings of whatever cognitive capacity possess the need for love, understanding, dignity and the active development of their productive-creative abilities. They want to share responsibilities and co-operate to improve their communities. They need ask for nothing more, if only they are given a chance.”

“What kind of society do we want? Do we want a society where people are encouraged to be dependent or do we want a place where people are encouraged to stand on their own feet? Do we want to have warehouses into which people are funneled or do we want to enable as many handicapped people as possible to be out among the fun where they want to be? I think one of the most difficult things about your job must be that so often, you are helping people go where they do not want to go.”

75

PROMOTE INDEPENDENT LIVING OVER INSTITUTIONALIZATION

RECOMMENDATION:

That the Federal Government promote a more suitable and cost-effective alternative to institutionalization by introducing enabling legislation for cost-sharing with Provinces and municipalities the provision of comprehensive services to assist disabled persons to live and function independently in the community.

That the proposed legislation include the following features:

• Independent living services to be made available to disabled adults by non-profit organizations which are managed by disabled persons or their representatives.
• Family support services to be made available on a sliding fee scale to assist families with a disabled dependent.

$22,000 Saved: Based on American experiences, there is a remarkable difference in the average annual costs of keeping a disabled person institutionalized compared with assisting him or her to live independently in the community. Institutionalization costs $30,000; independent living $8,000. A potential yearly savings of $22,000 is possible each time a disabled person can make the transition from hospital to community. The Multiple Sclerosis Society of Canada has found that the difference of caring for a person in a nursing home is $11,900 per year. The same service-2 hours per day-in a private home costs $5,730 per year. Wherever the costs of institutionalization and independent living can be compared directly, it is clear that independent living is significantly less expensive. These facts alone justify a major Government initiative to promote independent living.

Preference: Many disabled adults, now institutionalized, would prefer to live independently, if they could be assured of community support. This support would involve special education, training and counselling needed to learn how to function independently. It would also cover attendant care, and assistance in securing housing and transportation.

Involvement Crucial: Disabled persons themselves must play a key role in the development and management of these independent living programs. The success of existing programs depends greatly upon the sense of "ownership" felt and communicated by the disabled persons who helped to develop them.

Helping Families: Another alternative to institutionalization is to make it possible for the disabled person to live with his or her family. Experience has shown, however, that families who care for a disabled dependent often suffer from "burn-out".

This means that they become physically and emotionally exhausted from the continual responsibility of responding to the special needs of the disabled person. "Burn-out" frequently creates the conditions for divorce, child abuse, and mental breakdown. Community support services, respite care, temporary attendant services, and counseling must be provided so that families can be freed periodically from their responsibilities.

Central Theme: Throughout the Committee's hearings across Canada, the concept of "independent living" emerged as a central theme. As an idea, it serves to counteract the myth of "helpless victim" which plagues disabled persons wherever they go. As a daily reality, it enables disabled persons to care for themselves in ways that no institution could ever match. As Federal Government policy, independent living makes remarkable economic sense.

First Step: Unfortunately, community programs to provide the services needed for independent living are almost non-existent in Canada at this time. The Committee investigated successful programs in the United States and Europe. The evidence clearly showed the concept to be more beneficial and less costly than institutional care. Economic realities in Canada for the foreseeable future all favour this concept, as do the expressed wishes and needs of thousands of disabled persons. What is needed now is preferential consideration by the Federal Government.

* * * * *

Institutionalization costs $30,000; independent living $8,000.

76

ESTABLISH FUNDS FOR DEMONSTRATION PROJECTS IN INDEPENDENT LIVING

RECOMMENDATION:

That the Federal Government, together with interested provincial governments, make a commitment in 1981 to assist in the funding and establishment of demonstration projects which would provide independent living services to disabled persons.

No Transfer: The experience of American independent living programs cannot be directly transferred to Canada. The fiscal and jurisdictional relationships among municipal, regional and federal governments differ from the American situation. Government involvement in programs for disabled persons has evolved by different routes in the two countries.

Canadian Model: What can be transferred from the United States is the knowledge that independent living is successful wherever it has community support services. What is needed now is funding to develop a Canadian model. At present, the. National Welfare Grants Program provides funds, consultation and information to projects which have the potential of increasing self-help activities within

Canada's welfare system. During 1978-79, 163 projects received grants under this Program. The Committee suggests that the Federal Government utilize funds from the Canada Assistance Plan or the National Welfare Grants Program to establish demonstration projects in independent living. A commitment to start these projects should be made during 1981.

Transition: The most difficult times for a disabled person are those involving a major life change, such as that required in moving from an institution to living within the community. The demonstration independent living programs should budget for the costs needed to help the disabled persons make this initial transition. The provision of sufficient funds to cover this critical time can make the difference between permanent assistance and self-sufficiency.