Independent Living Centres: Turning Lives Around

By Helena Katz

The Niagara Centre for Independent Living (NCIL) turned Jo-Ann Fortin's life around. "Without it I would still be in bed watching soap operas," she says. Fortin recently founded the DisAbled Women's Network in the Niagara region and is organizing a forum to be held in June.

Independent Living Resource Centres across Canada have turned around the old notion of dependence on the system by people with disabilities. Consumers are given the support and self-confidence they need to achieve their goals and learn the empowerment skills to advocate for themselves and become contributing members of their community.

"There's a lot of support for me to do what I can do," says Welland, Ontario native heather Delisle. "It's okay to admit my limitations and find strengths in other things." Before becoming visually impaired, Delisle was an Industrial design drafter: "I was the kid who went through high school drawing. The mother of two is now studying social work.

Bill Penny says the Kingston Independent Living Resource Centre (KILRC) helped him improve his self-confidence. "When you have a head injury, things get difficult emotionally. The ILRC help me adjust and work through my difficulties." Peer support is an important aspect of the work at ILRCs. "Seeing other functioning and working is essential in terms of peer support and mentors," says Delisle . That support also breaks down the isolation which many people with disabilities can sometimes feel.

"We get a chance to meet other people and have a super time," says Penny. Toronto's Michele Dickson echoes his sentiments. "If the Centre for Independent Living in Toronto weren't there, I wouldn't have connections with people who have the same problems and experiences as me." Dickson felt discouraged after being turned down by social workers for a special bed to accommodate her rheumatoid arthritis. She says it was encouraging to find people who she felt cared about helping her. The CILT staff make telephone calls to find out what she was entitled to. "When I came up against a brick wall, they helped me chip away at it," she says.

Delisle also noticed an attitudinal difference at the ILRCs. Most of her contact with service providers had been with the Ontario Vocational Rehabilitation Services. "Their attitude was, "We can do it for you," whereas at NCIL (Niagara Centre for Independent Living) it was "We can do it for ourselves." Not everybody can do everything - but everybody can do something."

Brian Gage of d'uncan, B.C. was also struck by the level of consumer participation at the Cowichan Valley Independent Living Resource Centre. "The core programs were consumer-driven and cross-disability." This latter approach of the ILRCs has helped raise awareness of the issues faced by consumers with different types of disabilities. "It broadened my awareness of disabilities. "It broadened my awareness of disability issues and sensitized me to other people with other types of disabilities," says Gage.

The centres also provide information and referral to consumers with disabilities, "It's a lifeline," says Port Colborne's Fortin. "If I need anything, I can pick up the phone. They're there to help - no matter what."
In Caraquet, New Brunswick, Gilles St-Pierre says the Association des personnes handicapes del la peninsule acadienne is "the only place in the area where people can call with questions and where we accept all disabilities."

Delisle says that the ILRCs are essential because they serve both a supportive and a practical role in the lives of people with disabilities. "We will always need it for strength, information and referrals."

Associate national Director of the Canadian Association of Independent Living centres (CAILC) Traci Walters explains that the advocacy, support and information roles the centres play is important because "people with disabilities are coming out of institutions and bedrooms. For the first time, they're accessing Canada like everyone else has been for years."

The Centres provide other services, such as budgeting assistance, as individual consumers feel the need. When Blanche Chiasson found out her motor scooter would cost $3,200, she phoned the Caraquet centre for help. Executive Director Louise Blanchard wrote letters to local businesses asking for money, and managed to raise $600. Chiasson got her scooter this winter.

Gilles St-Pierre has been working at the Caraquet centre as an accounting clerk for the past eight months. He had a year of accounting studies under his belt, which the centre complemented with computer training. "They paid for a trainer to teach me ACPAC an accounting software package) on the computer."

ILRCs encourage consumers to get out and participate in the community. Fortin comments that "NCIL has helped people get out, get around, go shopping." For Delisle, "it woke up the advocacy voice in me. now I wonder why people don't know what they're entitled to."

It's that sense of empowerment which consumers gain form the centre that allows them to go out and advocate for changes in the community. "I think the ILRC is like the backbone of people with disabilities going out and getting the changes they need made," says Penny. When Fortin and a group of Port Colborne residents (both with and without disabilities) approached the city about getting busing for the area, NCIL supported them. The group of residents wrote letters and went before council in January 1992 but were turned down. "We're not giving up," says Fortin. "Next year there will be a new council and aldermen. So we'll try again."

Staff at the Niagara Centre also helped Fortin set up DAWN Niagara. They showed her how to start up a group and get funding, helped her prepare a pamphlet for DAWN's June forum, and visited the hotel where it is being held in order to indicate to the staff what the participants' needs will be.

The presence of ILRCs has had a positive impact on both traditional service providers and the community. "More and more service providers are coming to us and getting information," says Penny. They recognize the centres' knowledge about disability issues and available services, he explains. Welland's Delisle agrees. The centre's presence "has raised awareness of the rights and barriers. It has had an impact on service providers, because they are not up to snuff on these issues."

Delisle and Gage say the greater awareness of disability issues has translated into better community services for consumers. In Welland, building accessibility has improved, and the town library is being built with people with disabilities in mind. "What you don't see is the mind set," says Delisle. "There's a definite change there, and I think we've contributed to it."

Thanks to the efforts of the local ILRC, the City of d'uncan has installed audible traffic signals. Gage also sits on the mayor's Handicapped Advisory Committee. Last year the ILRC, the City of d'uncan and Municipality of Cowichan Valley collaborated t encourage community participation in National Access Awareness Week.
Penny says that in Kingston, "people's perceptions have changed about us because of the centre." And community support for the centre in Caraquet, new Brunswick has been evident for the past four years at the centre's annual radiothon. Each radiothon has met its goal of $20,000. " We have a lot of financial support form local merchants," says St-Pierre.

But Traci Walters, Associate National Director of CAILC, wishes the government was more supportive of the centres and the empowerment skills consumers are being taught. Independent living saves money for the government and pumps money into the economy, she says. "Canada as a whole taps into a whole new market, since 14.5% of the population are people with disabilities."

She illustrates her point with the example of someone who has quadriplegia. In a long-term care facility with 24-hour attendant care, receiving a disability pension including fee drugs and medical supplies, he probably costs the government $200,000 annually.

"Take that same individual, move him into apartment and give him attendant care when he needs it - says, six or eight hours a day. He gets a job making $20,000, $30,000 or $40,000. He's burying food, paying GST, and a quarter of his wages goes to taxes. he also saves $500 - $800 because he has private health insurance. Then he buys his own care. Now he's happy, doing what he wants, and he's generating money back into the system and saving money for the government He's like everyone else who pays his or her own way."

Walters says this saves the government money because people with disabilities who are autonomous not only pump money back into the economy, but also fulfil their own needs rather that depending on someone else. "It meets the needs of the government to save money, and it lets people become who they want to be," Says Walter. She half-jokingly adds, "If the government said, "We need to save money, so we're taking people with disabilities out of institutions and providing more community support" - I don't think anyone would rebel!"
ILRCs play an important role in information and referral and in providing the support and confidence to consumers with different disabilities to advocate for themselves. Delisle says that if the NCIL closed its doors, there's "enough gumption in this community to start something up again." She points out that ILRCs are an essential service.

"Too much of what we do for people with disabilities is around the medical model. We need to look more at the social environment. You can't just give people pills and beds."

Helena Katz is a free lance writer and public relations consultant with Katz Communications in Montreal First published in the Summer 1993 issue of Abilities magazine.