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Parents of autistic Ont. kids angry over delays

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Date: Friday Nov. 19, 2004 8:37 AM ET

TORONTO — Growing frustration with the "crushing" burden that weighs on families with autistic children boiled over Thursday as parents savaged the Ontario government's failure to dole out nearly $17 million in funding with 1,200 kids languishing on a waiting list.

It's "unconscionable" that the province neglected to spend $16.7 million it had allocated for the program over the last five years, said Bruce McIntosh, whose son Cliff, 4, has been on the waiting list for nearly two years.

"They should be helping those parents," said McIntosh, who lives just north of Toronto.

"It's a crushing load to bear, $20,000 (a year for treatment) and that's for our boy. . . . To just leave them literally high and dry on a waiting list is ridiculous."

McIntosh was one of several parents who were on hand for a legislative committee's review of a scathing auditor's report that found the province's $44-million Intensive Behaviour Intervention program in a state of disarray.

Acting provincial auditor Jim McCarter found records at the Ministry of Children and Youth Services, which is responsible for the program, were inaccurate, including at least two instances where $3 million was incorrectly recorded as spent.

It also found the 547 children who are getting therapy are being shortchanged on the number of hours of treatment they should receive by four hours a week, on average.

Under the program, children receive an average of $79,000 a year to cover the steep cost of intensive one-on-one therapy, regarded as the most effective treatment for training autistic children to function more normally.

The audit also indicated the province couldn't track spending and waiting lists, or ensure agencies were providing the support services they were being paid for.

Lillian Wagman, whose autistic sons Michael, 6, and David, 3, both waited nearly five months for treatment, gets direct funding from the province, but not enough to cover the full cost of therapy or the $150-an-hour price tag for a clinical psychologist to oversee her program - a requirement of the funding.

"At $150 per hour, that's impossible for a family with two children with autism," Wagman said.

New Democrat health critic Shelley Martel, a longtime critic of Ontario's autism program, urged the government to take immediate action.

Martel said the province needs to cut waiting lists and choose between funding agencies to provide services or give parents the money directly to hire approved therapists.

"If there are not concrete policy decisions made within the next number of months, you will continue to see children who will sit on a waiting list and never get service because they're going to turn six," Martel said.

"We just can't have that happen anymore. . . . We can't wait 18 months or even a year for those important issues to be resolved."

Children's Minister Marie Bountrogianni said she's examining the auditor's report, but also noted changes had been in the works before the report was released.

The province has boosted funding for autism by $40 million, improved the collection of data and reduced assessment times so children that don't qualify for the program are diverted to other services, she noted.

"We can't clean this up overnight," Bountrogianni said. "I understand the parents' concerns. We're working as fast as we can."

The ministry said it plans to have a framework and contracts in place in March for a proper evaluation of the IBI program.

McIntosh said the province needs to consider funding parents directly so they can get the services their kids need without spending years on a waiting list.

"They've got the budget to do it and they're choosing not to spend that money? That's negligent," he said.

"They're not trying hard enough."

The province is currently battling a lawsuit by parents who say the cutoff age of six is arbitrary and discriminatory. Other parents have filed complaints about the restriction with the Ontario Human Rights Commission.

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