So you want to start an Independent Living centre? A Winnipeg case study

Diane Driedger and April D'Aubin, residents of Winnipeg, are both involved at the board and committee levels with the Winnipeg Independent Living Resource centre. Diane was Vice-Chair of the Board of Directors and Chairperson of the Program Sub-Committee in addition to her involvement with the Mennonite Central Committee-s founding committee of the Winnipeg ILRC. April is currently a Board member and serves as Chairperson of the Program Sub-Committee. She is also employed as Research Analyst with COPOH.

Unless you are well-entrenched within the disabled persons self-help movement, you may not be fully aware of the Independent Living phenomenon. In ever-increasing numbers, disabled persons are advocating independent living, a service delivery model, as an alternative to traditional rehabilitation. While the traditional rehabilitation approach concentrates upon changing the disabled person to accommodate the environment, independent living emphasizes adapting existing environments to meet the needs of the people who must inhabit them. The basic principles of independent living are individual control, self-determination and integration. Disabled persons involved in the self-help movement define independent living as "participating actively in daily life and making decisions that lead to self-determination for disabled people. This implies away from custodial institutions and being responsible for one's own affairs." (Frieden, 1979)

History of Independent Living

Independent living centres originated in Berkeley, California, after some graduating disabled students realized that once they left the university they would no longer have access to the services they depended upon in order to live in the community. They required such services as attendant care and accessible transportation. To solve this problem, they organized co-operatively to guarantee the provision of the services they required. The involvement of disabled persons in the administration of services fundamentally altered service delivery. Consumer control, flexibility and services which were responsive to recipients' needs became hallmarks of the independent living service delivery model and these have served to distinguish it from other models. These three components have remained key elements in the independent living approach to service delivery.

To a certain extent, independent living can be viewed as one of the components in a reaction by disabled citizens against the social and economic segregation which they had experienced during the first 60 years of this century. Disabled persons lived in large custodial institutions and they were educated in segregated schools while the sheltered workshop system provided work. During the Sixties, many disadvantaged groups lobbied to improve their position within society. Though women and blacks received the most media attention, elderly people, native people and farm workers, among others, were just as active. Disabled people, influenced by these events, formed their own organizations.

Canadian Initiatives

Disabled persons soon organized to lobby for full participation and equality within society. In Canada, these became watchwords of the new disabled persons movement which began in Western Canada with organizations that formed in Saskatchewan and Alberta in the early 70s. By 1976, there was sufficient unity within the disabled community to launch a national organization known as the Coalition of Provincial Organizations of the Handicapped (COPOH). This movement coalesced around a cross-disability philosophy - that is, it advocated for all disability groups as opposed to working for only one disability group in order to achieve equality and self-determination for all.

In its early years, the disabled persons movement concentrated primarily upon collective self-help issues such as achieving equal access to transportation and employment opportunities. At the COPOH 1980 national conference, Parameters of Rehabilitation, consumers focused their attention on rehabilitation issues and were introduced to the writing of Gerben DeJong, one of the foremost American independent living theorists. Canadian activists discovered a viable alternative to traditional rehabilitation - the independent living philosophy and the service delivery model which stems from it.

The American concept of independent Living, as it was exported to Canada from the United States had many parallels with the indigenous disabled persons self-help movement. Both espoused such principles as consumercontrol, self-determination and integration. Independent living, both as a philosophy and a service delivery model, was a logical progression for the disabled persons self-help movement in Canada. Since its introduction into Canada, the momentum behind independent living has intensified. Centres have been established in Kitchener, Thunder Bay, Toronto and Winnipeg and others are in the planning stages in various parts of Canada.

How does a community form an Independent Living Centre? To answer this question, the Winnipeg Independent Living Resource Centre will be examined as a case study. This example will need to be adjusted to local conditions - existing services, funding, people, and resources in different parts of Canada. In examining the Winnipeg experience, it seems that there are some keys to success that could be followed by a group wishing to organize a centre:
1. gain the support of community and/or church organizations,
2. gain the support of the disabled persons community,
3. verify gaps in service provision,
4. remain flexible to best assess the needs of the disabled community,
5. work with, not against, existing service providers,
6. build a community board.

Gain support of community and church organizations

In Winnipeg, the Independent Living Resource Centre grew out of a sub-committee of the Mennonite Central Committee (MCC). The sub-committee was formed in September, 1982, to investigate the possibility of founding a centre. This action was influenced largely by the establishment of a Centre in Kitchener, Ontario, with MCC assistance.

The sub-committee thought a need existed for a consumer-oriented community-based organization to help fill service gaps for disabled persons. From the beginning, the sub-committee agreed that if a centre was established it would break away from MCC and become an autonomous organization. In the past several years, MCC has provided 15,000 Canadian dollars in seed money for the Centre. MCC also seconded its Handicap Concerns consultant, Henry Enns, a wheelchair-user, to the Centre. He became its half-time director when the Centre opened in February 1984.

Gain support of the disabled persons community

The sub-committee enlisted both disabled and nondisabled persons interested in independent living for persons with disabilities. It was decided that the centre should be crossdisability - it should serve persons with any disability (emotional, physical, mental, sensory). The sub-committee discussed the philosophy of independent living and how to impart it to disabled people, the community at large and potential funders in the private and government sectors.

The disabled individuals on the subcommittee were also activists in self-help organizations such as the Manitoba League of the Physically Handicapped (MLPH) and the Manitoba Federation of the Visually Handicapped. Their interest in independent living gradually spread through various disabled persons organizations. At its 1984 Spring Conference the MLPH decided to become a co-sponsor of the Independent Living Resource Centre.

Verify gaps in service

The sub-committee debated how to best determine the need for a centre. It considered surveying disabled residents of Winnipeg on existing'; service gaps. However, this idea was ultimately rejected as existing problems were well known within the disabled community. The provincially run Home Care and Home Orderly Services were two well-publicized examples of mismanaged services that were not meeting people's expressed needs.

The sub-committee decided to demonstrate and model an independent living centre; needs could be discovered in this process. In the spring of 1983, with a federal summer student employment grant, the sub-committee investigated the disabled community's interest in an independent living centre and the services it could offer. Existing community resources that assist disabled persons to achieve greater independence were also investigated.

Several meetings were held to explore peer counselling. Peer counselling was tested out in this way because it is considered a basic service to be provided by centres (First National Independent Living Centres Meeting, 1985). People were excited about peer counselling and many of those who attended the meeting volunteered to be peer counsellors in any future program. Participants felt that a peer counsellor could better help a person move out into the community. Many knew disabled fiends who were reluctant to venture into the community after years of living in institutional, parental, or nursing home situations. An independent living resource centre would provide cross-disability counselling.

The independent living sub-committee, faced with these findings, decided to so ahead and establish an Independent Living Resource Centre in Winnipeg It would be called a "Resource Centre' so that it would not be confused with a residential independent living program. It would be a "resource" - a networking place. The sub-committee was awarded a one-year Canada Works grant and two community development officers were hired. The Centre opened its doors in February, 1984

Remain flexible to best assess the needs of the disabled community

Independent living centres, by definition, include peer counselling, personal advocacy and information and referral services (First National Independent Living Centres Meeting, 198S). While these services" were required in Winnipeg, there were also other needs. An independent living centre should be geared to revamping and initiating projects to meet these needs.

When the Centre officially opened, the first major activity which it initiated was a Vacation Relief Program utilizing summer employment grants for funding. In 1983, the sub-committee had found that some of the gaps in attendant care services for people living in the community were respite care and vacation relief. Disabled persons wanted to take vacations and needed an attendant to accompany them but government services did not provide for such assistance. Also, relatives of disabled persons who provided the primary care for the disabled family member, needed vacations. The Vacation Relief Program had many users and was considered a good program by those who received services. It was operated again in 1985.

In addition to helping disabled people and their families take vacations, the project demonstrated how a training program could be developed to better educate attendants for disabled people. The Independent Living Resource Centre training program provided CPR training and instruction in using lifts and aids. Most importantly the program provided disability awareness and attitudinal training. Attendants learned that they should ask disabled people how and when they wanted assistance with different tasks. Disabled people themselves best know their own needs.

The disabled community will determine the future directions of the Centre's programs. The Centre has a Program Committee that meets once a month to consider arising needs and gaps in services and how to meet them. The Centre is willing to take on a new service if there is no other community body or government service to fill that gap. It is the philosophy of the Centre not to view its programs as set in stone. If another organization in the community wishes to run vacation relief, for example, the Centre will give up that function. In the case of peer councelling, advocacy and information and referral, though the Centre sees these as its main unique features as a consumer-controlled service (Independent Living Centre Definition, Canada, 1985)

Work with, not against, existing service providers

In Winnipeg, the Centre seeks to fill gaps in existing services provided by government and service agencies. It does not seek to duplicate existing services; it does not compete with other agencies or government services. The Centre wants the best possible services to be offered for disabled people. If an agency is running an existing service well, the Centre will not provide that service. The Centre considers peer counselling and advocacy as two areas where it will be able to do the best job. In both cases, disabled persons, consumers of services themselves, will impart information as staff and volunteer councellors.

Service agencies have not seen the Independent Living Resource Centre as a threat in the Winnipeg community. The Centre, to date, has been successful in conveying its message of wanting to work together with service provider to deliver the best possible service. Many representatives of service agencies attended the Centre's first independent living symposium, "Planning Independence Together", in March 1985. It was held to raise awareness about independent living centres.

Build a community-based board

It is important to build a board which has representatives of different groups in the local area. Community representation adds strength to the - Centre - community supports it. These representatives provide different points of view, contacts and perhaps connections to valuable people as resources in the community. Furthermore, the Centre does not appear to the greater community as the "pet project" of any organization or group. A well-balanced, community-based board by definition includes business people, the church community, consumers representing various disabilities, lawyers and members of the social work and medical community. The Centre does not yet have representatives from all these communities, however, as of its incorporation date in September 1985, the Centre will have most represented. The three-year development period of the Independent Living Centre has allowed for a core of interested individuals to coalesce into a strong, representative board.

Conclusion

The Independent Living Centre in Winnipeg has gone through initial stages of development which included the preceding "keys" to success. These keys must, however, be adjusted to the existing conditions in your area. Independent living centres must be flexible and respond to the local needs of disabled people

Independent living for disabled people is here to stay. More and more disabled people are coming to the realization that they want to live in the community, like all other citizens. They want the choice to work, go to school, marry, have children, shop, go to recreational activities and live In their own apartment or house. The Independent Living Resource Centre is providing a boost to these aspirations in Winnipeg.

Sources

Colgan, Maureen, "Independent Living Resource Centre", The Manitoba Social Worker, Vol. 18, No. 4, September 1984: 8-10.

DeJong, Gerben, "Independent Living: From Social Movement to Analytic Paradigm," Archives of Physical Medicine and Rehabilitation. 60 (October 1979): 435-446.

Derksen, Jim, The Disabled Consumer Movement: Policy Implications for Rehabilitation Service Provision. Winnipeg: COPOH, 1980.

Derksen, Jim, "Independent Living Movement and the Self-Help Process". Paper presented at the Disabled People's International Asia-Pacific Regional Self-Help Leadership Development Training Program, Bangkok, Thailand, 20 24 April 1983.

Enns, Henry, "Canadian Society and Disabled People: Issues for Discussion" Canada's Mental Health 29 (December 1981): 14 17.

Enns, Henry, "Independent Living A COPOH Perspective." Winnipeg: COPOH, 1983.

First National Independent Living Centres Meeting, Kitchener, Ontario, "Independent Living Centre Definition Canada", Januay 15, 1985.

Frieden, Lex, "Independent Living Programs in Houston", Paraplegia Life. (January February 1979).

Independent Living Resource Centre, Winnipeg, "Vacation Relief Program Polides", 1984.

Regehr, Richert, Val. Moving In... A Housing Manual. Winnipeg: ILRC, 1985.

Suderman, Brenda, Cullihall, Henry, Dyck, Bev. "Project Report", August, 1983, unpublished.