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By Rachel Thompson
Paula Keirstead is the Community Outreach Coordinator with the Winnipeg Independent Living Resource Centre and has lobbied extensively in the disability community for Home Care. For three and a half years she chaired the Manitoba Advisory Committee on Home Care, until she and all the other members quit "because it was a farce" . The members were never replaced by the provincial minister responsible for the now defunct committee.
Rachel: Tell me about how the issue of Home Care for women with disabilities differs from the issue of caregiving for the sick.
Paula: The thing that sets the stage for this conversation for me is that people with disabilities are talking about being able to be citizens in the community. If you're talking about empowerment rather than illness, your perspectives and needs might be different.
Rachel: How are they different?
Paula: For folks who are doing early discharge from the hospital, of course they want caregivers in their home. Women with disabilities are lobbying for the chance to take a pee-break wherever they are - at home, or at work. The whole agenda is very different.
Rachel: If you need Home Care services for your whole life, your relationship with your care provider is different, they become a part of your family. Isn't one important issue for women with disabilities having the power to hire their own Home Care attendants?
Paula: That's called Self-Managed Care.
Rachel: Right. Tell me about Self-Managed Care, the program that allows people with disabilities to manage their own Home Care program and hire their own Home Care attendants.
Paula: Most of the program participants are women, so I think it is an interesting program in terms of how it affects women. Self managed care is an exciting opportunity, but also quite a lot of responsibility. Having to lobby for themselves in a Home Care program can be daunting - many would settle for less.
Rachel: Why?
Paula: It can be daunting because of low self-esteem. Often women with disabilities are still very much in the caregiver role, not only for themselves but for their families. Some were caregivers their whole lives and now they have disabilities. This means a lot of responsibility in trying to meet beyond their own needs, by also caring for a child, or a spouse who is ill.
Rachel: How do you think a national policy on Home Care will affect women with disabilities?
Paula: With health care services being devolved to the provinces, seeing the federal government doing something is encouraging to me. I expect national standards for the program and that at least the provinces will be consistent with what they are providing. This will open the doors for women to travel. Right now if they want to go to another province, there is no guarantee they can get the same quality of service. For example, one woman travelling from out West to go to a university in the East couldn't go to school until the Home Care program developed in that province, otherwise she would have to pay for her care dollar-for-dollar. This obviously affected her career.
Rachel: What else would you like to see reflected in the program?
Paula: It has to take gender into account and understand that individual needs are very different. Unless there is a real focus on the gender of the users and service providers of Home Care, you can throw all the money you want at it, it won't be appropriate care.
Rachel: What will this mean?
Paula: It means you've got to be creative. Instead of the user meeting the program, the program needs to meet the user.
Rachel: What are the costs of building a program that adapts to the needs of individual clients? What about the issue of funding?
Paula: I think providing people with the supports they need to stay in the community is not only the most human thing to do, but also a cost-effective thing as well. The fact is that Canadians have indicated a program like Home Care is where they want to see their tax money going. To me that supports the need for a national initiative.
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