KJIPUKTUK (Halifax) – Lack of government support may well prevent Gerianne Hull, who has cerebral palsy, from continuing to live the full life in the community that she currently enjoys.
The Nova Scotia Health Authority has twice denied Hull funding to pay for an additional 110 hours per month of home care that became necessary after she divorced her husband.
It’s very scary
Because of the funding refusal Hull is now paying out of the program’s required “reserve/emergency” funds for the extra hours of support that she needs.
And that money is running out fast.
“It’s very scary,” says Hull. “As it is at the moment, I have cut back on my hours, and that makes it very difficult. Imagine you have to use the washroom, but you cannot do that by yourself, and you have to wait several hours for help to arrive. But except for that you could be on your own for a long time.”
“Does that mean you should be in chronic care? Absolutely not,” says Hull. “I am fighting for my idea of what my life should be like. Not what the government thinks it is.”
“All I am trying to do is live my life,” Hull says. “I am not the kind of person to sit at home and do nothing.”
No clear way to appeal
What makes the situation for Hull particularly difficult is that there is no clear path to appeal the government’s decision, says Fiona Traynor, a long-time community legal worker with Dalhousie Legal Aid.
Policy manuals do not really cover Hull’s situation. More importantly, whatever review process is offered is simply conducted by another departmental manager. There is no independent third party to conduct the appeal, says Traynor.
Neither the Department of Health and Wellness nor the Nova Scotia Health Authority seem to treat Hull’s situation as urgent, Traynor says.
Rules are rules, says the Nova Scotia Health Authority.
“In keeping with the provincial policy as determined by the Department of Health and Wellness decisions to change service levels are made in consultation with care coordinators and management. Decisions are made within the parameters of the policy, which sets out limits for funding and hours of service,” writes John Gillis, director, online engagement and media relations in an email.
Rules are rules, says Leo Glavine, the minister of Health and Wellness.
“The department is not planning any changes to the policy or increases in the funding limits at this time,” Glavine wrote Dalhousie Legal Aid in June.
Both the provincial NDP and the Progressive Conservative caucuses have urged the minister to use his powers to end Hull’s situation. .
A deep-felt wish to live an independent life
Meanwhile the clock is ticking . Desperate for some kind of reprieve Hull has started a GoFundMe drive.
On the funding website she explains her predicament in further detail. Also shining through strongly is her deep-felt wish to live an independent life.
“I am a physically disabled adult woman with fully functioning mental faculties, who just needs additional attendant hours/funding, in order to lead an active and meaningful life within the community,” she writes.
“I feel that the priority needs to be on the fact that I am extremely capable of making life decisions for myself, conveying all aspects of my various needs, and instructing those who assist me on how best to do so, – i.e. I self direct my needs. I do not believe that my physical needs, nor the number of hours I need for assistance, should be the determining criteria in evaluating whether or not I can live where I choose to live.”
A motto to live by
“I do believe that I have done more with my life because of my disability than I would have otherwise,” she tells the Nova Scotia Advocate.
“Years ago I heard a quote by a priest, which became a motto I live by,” she says. “Ask yourself, what can you do for your world with your handicap that you couldn’t do without it.”
“Many people have come up to me the last year and have said, you’re fighting not just for yourself, but for all of us. I don’t think I really realized that until people started telling me,” says Hull.
Note, an earlier version of this story incorrectly implied that Ms. Hull was paying for the extra hours out of her own savings. This has now been corrected.