Vicious cycle — bureaucracy gets in the way of proper care

Disabled aboriginals living off-reserve are floating in healthcare limbo; the gov't doesn't want to help and neither does the band council

By Jason Gondziola

Georgina Morin, an aboriginal Canadian, has managed to live an independent life despite severe paralysis. Though she can move her arms, she only has partial use of her left hand, no use in her right and both her legs are paralysed. Ms Morin's injuries result from a gunshot accident suffered when she was a 14-year-old girl living on the Sandy Bay reserve in Saskatchewan, but the unfortunate event has done little to stop her from pursuing a full life. In the time since her injury, she has earned a degree in education and raised a child as a single mother.

"I've always been persistent," she says. "I don't have to prove to anybody that I can do it, I'll just do it myself."

But Ms Morin's success story is a rarity in the world of aboriginals with disabilities, according to a study published by the Saskatchewan Institute of Public Policy, a non-profit, independent institute at the University of Regina. The research, carried out by Drs Doug Durst and Mary Bluechardt, reports that there is a "vacuum in public policy" surrounding the treatment of aboriginal people with disabilities.

"I've worked with disability issues and with aboriginal people for a long time," says Dr Durst, who is a professor of social work at the University of Regina. "I also noticed there was a lack of research and discussion around this topic."

He and Dr Bluechardt made use of a triangulation of data sources. The findings indicate an alarming amount of neglect towards aboriginal people with disabilities, a fact that Dr Durst attributes to a number of causes, including a lack of cultural sensitivity and a shortage of aboriginal people in necessary health service industries.

VICIOUS CYCLE
More importantly, however, the research found that, because of their unique position in Canadian society, aboriginal people with disabilities are liable to get caught up in a cycle of healthcare bureaucracy, a phenomenon that Dr Durst terms "ping-ponging."

Of the 1 million aboriginal Canadians, just over 638,000 are classed as First Nations, living both on and off reserve. These individuals are grouped into bands, and each band is allocated a certain amount of money, discretionarily lumped into a number of areas, including funding for people with disabilities. The problem, according to the research, is that the band is not mandated to spend the money on these specific areas, and in some cases will divert funds intended for ease-of-access into non-crucial areas, resulting in less-than-adequate care on reserve for aboriginals with disabilities.

"That's the reason I stopped living there," says Ms Morin. "There's no services there for people with disabilities and nobody's willing to help you with your personal needs."

Dr Durst acknowledges that this is a dark side to the ongoing struggle for First Nations self-government.

"If they don't want to spend the money on disability programs, they don't have to," he says, citing one instance where a band had sufficient funds to widen a bathroom for a quadriplegic woman, but instead diverted the funds to refinishing a gymnasium floor.

In these cases, aboriginals with disabilities may leave the reserve in search of better care, but this can make matters worse. Provincial government programs, according to the research, are reluctant to become involved and refer the patients to the federal agency, which in turn refers back to the band government. The band government then typically will refer to provincial programs, starting the cycle over again.

CONSEQUENCES
While the research focused specifically on participants in the Saskatoon area, Dr Durst fells that it is likely indicative of the situation for aboriginals with disabilities across the country.

"Some of the issues vary slightly, but the issues we found are the same issues that other researchers have found, and have been confirmed in other situations as well," says Dr Durst. He adds that steps are already being taken to expand the research into other cities across the country, and that these problems aren't foreign to politicians he has talked with.

"When I presented it to people in government, they knew what I was talking about," he says. "There wasn't any trouble with that."

The challenge, he says, is to transform this knowledge into a concrete step in a positive direction. He says that there is interest in continued research coming from Saskatchewan's provincial government and that the data was presented to Human Resources Canada, He adds that ultimately, persistence will get the message out.

Ms Morin feels this problem must also be addressed from within the First Nations community.

"I'd get the national Chief involved, get all the band chiefs involved and say, 'Look: it's about time you guys put disability issues as a priority,'" she says.