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McGuinty dumps on autistic children

Debora Kelly
09/28/06

His son used to smile.

You can still hear in the father's voice his shock and anguish -- and underlying disbelief -- of his son's diagnosis of an autism spectrum disorder about six months ago.

Their son's pediatrician had brushed aside questions about his speech delay, telling him and his wife "to wait until he's two" before taking further steps. When the doctor told them, yet again, to wait even though their son's second birthday was a week away, the Thornhill couple quickly found another pediatrician.

Immediately, their son was referred to specialists. The diagnosis came quickly.

"It's very difficult to put into words how we felt," he says. "It was a total shock, we thought his speech was delayed -- not in our wildest dreams had we thought autism."

One in every 165 children has the complex neurological condition with no known cause or cure. About 70,000 Ontarians have the "spectrum disorder", with wide variation in its effects and no single best treatment package.

"We hope our son will make a complete recovery," says the father, explaining why he chooses to protect his son's identity. "I may not be living in reality but, rightly or wrongly, we feel it's not appropriate to label him."

He has seen "unbelievable" improvement since his son began Applied Behaviour Analysis (ABA), which, along with Intensive Behavioural Intervention (IBI), is an approach to understanding and changing behaviour.

Evidence shows early, intense intervention is crucial. However, the programs come with a financial burden too onerous for most families at $25,000 to $60,000 annually.

His son joined a waiting list for funded treatment at Kinark Child and Family Services at No. 185 -- a list that has barely budged in three years. Today, the toddler is No. 184.

For this family, ABA for four hours a day costs about $2,800 a month. Their son also receives community-supported occupational, speech and music therapy, plus additional daycare costs.

"I estimate our line of credit will last for two years before we have to sell our house," he wrote to Liberal MPP Mario Racco last month. "What parent will not do the same for their child?"

In response, an assistant cleared up the "confusion about what the government is doing": "Despite the frustration of the effected (sic) families, more children have access to more services than before. The McGuinty government has more than doubled its investment in autism services to more than $112 million annually... An estimated 120 more children will receive IBI ..., bringing the total to approximately 915 children, a 70-per-cent increase from April 2004."

That kind of form-letter response-- "from the 30,000-foot level" as Oak Ridges Conservative MPP Frank Klees characterizes it -- appears callous. (Mr. Racco didn't return a call.)

"That doesn't even touch the surface," says the father. "There is no doubt ABA is working (for my son); it gives us a lot of hope. My heart goes out to other families who can't even start."

The Liberals' bravado about their accomplishments also fell flat on parents of autistic children in the opposition gallery at the legislature Monday.

They accused Premier Dalton McGuinty of breaking his promise to extend IBI funding beyond age six. Instead, he established a "reference group" to report in January 2007.

With the waiting list for IBI at 750, Mr. Klees says it's essential that funds are "invested" today to ensure these children can contribute to society in the future.

"$400 million for a new casino in Windsor? (Hundreds of thousands) for changing the trillium logo? That's more important than autistic children? There is something fundamentally flawed with the priorities of the McGuinty government."

In a province such as ours, it's unconscionable these children are being dumped on waiting lists. For now, the Thornhill dad takes it one day at a time, remembering his son's smile and hoping he will soon see it again.

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