Date: February 10, 2000
Home Care For People With Disabilities Not Always In Client's Best Interests
Like all clients of the Capital Health Region, people with a disability are served by health care workers committed to a "client centred" approach. But according to the results of a new UVic-based research project, the clients' actual experiences frequently don't reflect this aim. For three years the participants in Project Inter-Seed, interviewed people with disabilities and observed their interactions with health care workers.
"Our research focus was on the gaps between the intentions of service providers and what we actually saw was happening," says human and social development professor Dr. Marie Campbell. She led the project, a collaboration with the Disability Resource Centre (a community-based advisory group) and a 16-member team of health care workers, people with disabilities and staff researchers.
The team's interview subjects ranged from the parents of a disabled child to an 89-year-old woman with a disabling condition. Participatory research procedures kept the interests of people with disabilities at the forefront, a departure from health care investigations which sometimes inadvertently "build in the interests of the organization into the information being generated" according to Project Inter-Seed's report.
Volunteers were recruited through the project's store-front office in Fairfield and while the report offers criticisms of the health care system, Campbell says that helping people see different perspectives, rather than being critical, is the point of the research. She adds that the CHR and home support agencies were "extremely helpful and co-operative in making it possible for us to do our observations." The report, Project Inter-Seed: Learning from the Health Care Experiences of People with Disabilities, shows how good organization may undermine good services.
Suggestions for improvement focus on thinking and working together differently. The report points out how scheduling home support workers creates as many problems for people with disabilities as it is intended to solve, and suggests changes such as giving the workers caseloads and letting them decide when to schedule visits. Another suggestion is the provision of individualized funds enabling clients to decide how to spend health care dollars assigned to them.
The Project Inter-Seed report has already been widely distributed throughout the CHR and Campbell hopes the region will help fund follow-up workshops using a board game developed by team members. "The game presents scenarios the team encountered during their research," says Campbell. "Players are offered choices and must make decisions as a person with a disability. Playing the game could be very useful for hospital workers, home support workers and people with disabilities and their family members."
Newly elected Sidney councillor Jeannette Hughes was among the people with a disability participating in Project Inter-Seed. She credits her project work with giving her the increased confidence to run for council last November after several years of serving the municipality in a voluntary advisory capacity.
Dr. Marie Campbell (human and social development) at (250) 721-8203.
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