Monday, July 19, 2004

Bar on family care shows an uncaring government

VICTORIA - Remember the Baulnes, the Kelowna family whose lives ended in despair after the government refused to provide money to help cope with their disabled son?
Because your government doesn't.
Maurice and Belva Baulne and their son Reece sat together in their little RV more than 2 1/2 years ago, while a hose running from the exhaust pipe filled the space with carbon monoxide. They were desperate - exhausted, running out of money and hurt. After 34 years of caring for Reece, who suffered from a terrible form of epilepsy and severe emotional problems, Maurice and Belva were sinking. They believed that Reece's emotional problems meant that handing him to strangers would destroy him. They knew they couldn't go on.
They needed help, and had tried to get $500 a month from the government. But while it was prepared to pay $60,000 a year to place Reece in an institution, government policy banned any payment to family caregivers.
After the deaths, then children and families minister Gordon Hogg promised change. "If any good can come out of these deaths, it's an understanding of the need for more flexibility," he said.
Empty words. Just ask Cheryl Hutchinson.
She's 34, a university graduate and composer. She also suffers from cerebral palsy, and requires 24-hour care to provide all her physical needs. The government will provide $6,000 a month so she can hire support workers.
But not the care worker she wants to hire, the one who has been looking after her since she was 13 - her father Phillip. The same policy that shattered the Baulnes remains in place. The B.C. government, almost alone among provinces, bars family members from providing paid care.
Cheryl and a few others have been fighting the rule for more than six years. And finally, after long delays, a BC Human Rights Tribunal has just ruled that the ban is illegal. It discriminates against Cheryl because she's severely disabled and against her father by barring him from work.
But it was a momentary victory. The government says it will appeal the ruling.
Cheryl's father, a single parent who is now 71, quit his job when she was 13 to provide care and give her the best chance at a full, independent life. They often lived on the edge of poverty. When there was no money for a wheelchair, he carried her to the school bus each day. He bathes her, rises in the night to roll her over in bed, helps her to the bathroom.
She's tried paid caregivers, but they've quit, or made her feel unsafe. (Imagine depending on a succession of strangers for almost all your physical needs.)
The government told the human rights tribunal it wants to make families to recognize their legal and moral obligation to provide care. It seems to me that Hutchinson has showed he understands that obligation better than most of us.
And the government says opening the door a crack could see more and more families seeking funding, causing costs to rise.
But it provided no convincing evidence. The government still decides when care is needed. Other provinces have successfully developed policies allowing paid family care.
And remember, the issue isn't whether Cheryl needs care. The government has agreed to provide $6,000 a month. Just not to her father.
Attorney General Geoff Plant says the government has to appeal the ruling, because it raises important issues.
But there need not have been a ruling. Instead of fighting families, the government could have developed a policy that allowed exceptions to the ban on family care based on clear criteria. (This isn't a Liberal issue; the NDP government was just as unyielding.)
The government's treatment of Cheryl Hutchinson and others caught in the same cruel trap shows little attention was really paid to the desperation of the Baulnes, giving up on the world in their lonely RV.
Footnote: The government's claimed commitment to providing support to help people remain in their homes is being undercut on another front. Parents have made convincing complaints that they are forced to put their severely disabled children in foster care because they can't get adequate government help to care for them at home.

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