Angry parents threaten to leave country
U.S. government pays cost of therapy for autistic children
By MARGARET PHILP
Saturday, November 20, 2004 - Page A11
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They are bitterly disappointed. They are tens of thousands of dollars in debt. And parents who were told by the Supreme Court of Canada yesterday that British Columbia has the right to deny therapy to their autistic children are even threatening to move to the United States, where the government funds autism treatment.
It was a crushing ruling for parents in British Columbia, who will have to dig into their own pockets to cover the steep costs of the intensive one-on-one behavioural therapy that has worked wonders with some children but that the court played down as an "emergent" autism treatment.
"Pierre Elliot Trudeau's vision of a just society died today," said Sabrina Freeman, one of the four sets of parents who launched their court battle against the B.C. government four years ago.
"I'm not talking about autism here. I'm talking about for every single, solitary, powerless minority in Canada, it's open season now.
"Personally, I'm wondering why I live in Canada. I'll have to think about that carefully.
"I might be forced to look at greener pastures. I wanted to change the society here to make it good for people with disabilities, and I failed. So I'm looking at my options."
Dr. Freeman has not abandoned all hope. Although she has written off the B.C. government, she and other parents are turning their sights to Ottawa where they want to lobby the federal government for "some decent disability laws" like those in the United States.
"If I fail there," she said, "there's nothing left for me to do."
She is far from the only one tempted by a U.S. system that while famously denying health care to millions of uninsured Americans, has strong federal legislation that provides publicly funded autism therapy through the schools.
Michael Lewis is the father of an autistic 10-year-old boy whose separate lawsuit against the B.C. government over its failure to fund autism therapy was torpedoed with yesterday's Supreme Court decision.
Mr. Lewis said he knows of "several" families who pulled up stakes in the province and moved south of the border, a move he, too, contemplates.
"After the election in the U.S., all the disgruntled Democrats were going to move to Canada. Well, now all the autistic kids and their families are going to move to America," said Mr. Lewis, who acts as president of the Autism Society of British Columbia.
"I've got to be quite honest. This is something I need to think about. Because I don't care how rich you are, when you're paying $40,000 a year over and above the government funding . . . to provide therapy for your child, that's not an easy task."
British Columbia pays $20,000 a year to cover autism therapies for diagnosed children under 6, and $6,000 for older children. But the cost of providing therapy at least 30 hours a week -- the minimum time that research shows to make a difference -- often runs tens of thousands of dollars more.
Just ask Justin Himmelright. To pay for the four therapists who work with his son, Griffen, six days a week, Mr. Himmelright of Maple Ridge, B.C., works at B.C. Hydro by day and as a consultant by night. And his wife has a full-time job. Even so, the couple has dipped into Mr. Himmelright's 80-year-old grandmother's retirement savings.
Mr. Himmelright, who is also suing the provincial government, expects the province to roll back the "meagre" funding program now in place.
Outside British Columbia, the Supreme Court ruling has thrown a wet blanket on the lawsuits and human-rights challenges being waged against provincial governments, such as Ontario.
But lawyers say there are important distinctions between these cases and the B.C. case that will allow them to sidestep the Supreme Court ruling when they make their arguments.
For one, Ontario provides an $80-million program that funds autism therapy for hundreds of children, a program plagued by long waiting lists and a history of mismanaged funds and lax government oversight. Many of the Ontario parents are suing over the province's policy that cuts off funding when children reach age 6.
In contrast, the B.C. parents were challenging their government's failure to put a program in place (the current one did not exist when their case was launched).
Still, the uphill battle for public funding to cover the cost of therapy remains steep.
"People are making such inherently wrong decisions. How the Ontario government and the B.C. government can watch people suffer while they have the power to do something completely evades me," said Brenda Deskin, whose family is one of 29 awaiting a court ruling in Ontario regarding the over-age-six threshold.
"It's just gut-wrenching. The impact it's going to have on these [B.C.] children and these families is too horrible to even conceive right now."
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