Saturday, July 17, 2004

Government cruelly fighting against families of disabled

VICTORIA - It should make you ashamed to see how your government is treating Cheryl Hutchinson.
Ms. Hutchinson is 34, a bright, accomplished university graduate and a talented composer
She also suffers from cerebral palsy, and is dependent on 24-hour care for all her physical needs, from going to the bathroom to getting dressed. The government recognizes the need, and says she's eligible for $6,000 a month so she can hire support workers.
But not the support worker she wants, the one who quit his job when she was 13 to provide full-time care for her, who carried her to the school bus when there was no money for a wheelchair, fed her, bathed her, the one who loves her.
Because he's her father.
The B.C. government - almost alone among provinces - has decided that people eligible for assistance can hire anyone they choose to provide care. Except a family member.
Ms. Hutchinson, along with a handful of others, has been fighting the ban. And this week she won. A BC Human Rights Tribunal ruled that the policy was discriminatory and unjustified, punishing her because of her severe disability and her father by barring him from work simply because he's a family member.
It should be a time to celebrate, after a seven-year struggle to get government to do the right thing. But no - the government plans to appeal the ruling.
Why won't the government let family members provide paid care? It's all about families, the government argued before the tribunal, and encouraging them to recognize their legal and moral obligation to provide care.
And it's all about money, as well. More and more family members might want to be paid, the government argued, and who knows where it would end.
It's a bit much to imagine Phillip Hutchinson being lectured about family.
He's cared for Cheryl as a single parent for two decades, given up his job and lived on the edge of poverty. He's given her the chance to go to high school and university and experience life. As her physical health has failed he's got up every few hours in the night to turn Cheryl over in bed, bathed her and done everything to help her lead a safe, full life. I'd say he knows about family.
The government also argued allowing family members to be paid could somehow turn into a major expense, without offering any convincing evidence.
Remember, the government is prepared to pay a stranger to provide care. Just not a family member.
There are no floodgates to open here. About 500 people, virtually all severely disabled, receive funding for individualized care under the current program. Allowing a handful of them to chose to hire family members doesn't increase the cost.
And as the tribunal noted, the government can set its own guidelines for when paid family care is allowed. Seven other provinces do that; in Alberta, with a similar program only four out of 8,500 clients have paid family care. B.C. finds it impossible to develop any policy but an absolute ban.
Ms. Hutchinson has tried paid caregivers. One made her feel unsafe, pushing her wheelchair into traffic against the lights. Another refused a request for juice because she didn't want to have to lift her on to the toilet later. Others quit, or found the work too hard.
Imagine for one moment being dependent on a succession of strangers for everything from getting dressed to bathing, solely because of a government policy. The Hutchinsons can't; for the last several years they have sent the money back to the ministry and Mr. Hutchinson, now 71, has provided the care.
Attorney General Geoff Plant says the tribunal decision must be appealed because it has far-reaching implications.
But there would have been no decision if governments - this includes the NDP government - had simply developed a fair policy that respected individual choice and peoples' right to dignity.
They haven't. And people like Cheryl Hutchinson are suffering because of their failure.
- From the Vancouver Sun

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