Wednesday, April 05, 2006

Our family was here!!!

Families press for more autism funding
Apr. 1, 2006. 10:00 PM
Parents and children assembled Saturday on the front lawn of the Ontario legislature to express frustration over lack of funding and long wait times for treatment of autistic students.
The Liberal government, despite having promised to lift ``unfair" and "discriminatory" age limits on costly childhood autism therapy, is appealing an Ontario Superior Court ruling last April.
The court ruled in favour of parents who won the right to have provincial funding for a specialized autism therapy extended beyond the previous cutoff age of six years.
The ruling found the cutoff to be discriminatory on the basis of age and a clear violation of the Charter of Rights.
The cost of the intensive one-on-one process, known as applied behavioural analysis (ABA) or intensive behavioural intervention (IBI) by the government, ranges from $30,000 to $80,000 per year for each child, depending on the number of hours of therapy per week.
The parents say waiting lists have continued to grow and families are risking bankruptcy to pay for the therapy on their own, while other families face the uncertainty of the court ruling being reversed, said Bruce McIntosh, who helped organize the rally.
"These parents are living under a cloud, an axe that could land on them," said McIntosh, whose six-year-old autistic son Clifford was on a waiting list for provincial funding for more than 2 1/2 years.
"Children don't stop learning at six. ABA doesn't stop working at six. It's just ridiculous, and that's what the ruling a year ago said."
He said he paid almost $20,000 a year for Clifford to recieve the therapy for 10 to 12 hours a week and had almost given up hope until the province told him last May his son's name was at the top of the list for funding.
Clifford now receives ABA for 20 hours a week with the province paying $33,800 a year for the bulk of treatment, McIntosh said.
"He's doing really well," he said. "It's nothing like the nightmare of trying to do it all on your own."
The lifetime care costs for a person with autism who does not receive treatment are estimated to range from $8 to $13 million, the parents' group said.
It's estimated that about 8,000 kids under the age of 18 have been diagnosed with autism in the province.
James Ip, spokesman for the ministry of Children and Youth Services, said the government hired 110 new IBI therapists last year and reduced waiting times for assessments for the treatment by 70 per cent.
But Ip did not have numbers on how many children in Ontario were still on waiting lists for the therapy itself.
"I recognize that obviously, we have some catching up to do in terms of children who are over age six," he said Saturday.
A decision on the province's appeal could come any day, but parents say they could see the case going all the way to the Supreme Court, despite Premier Dalton McGuinty's written pledge to stop cutting off children from treatment.
During the 2003 election, McGuinty wrote in a letter to the parent of an autistic child that the arbitrary cutoff age was ``unfair and discriminatory" and that a Liberal government would extend treatment to those beyond the age of six.
"We fully expect this government will take it as far as they can," McIntosh said.

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