APRIL 15, 2005

There's no easy access to early autism treatment
for kids in Canada

Even the courts can't agree on who should pay for pricey ABA/IBI therapy

When his son was first diagnosed with autism spectrum disorder (ASD) at the age of three, Michael Lewis was told his child might never talk, much less go to school.

Now in grade five in a regular classroom, the boy is a busy 11-year-old. He bikes, skis, swims and even plays clarinet in his school orchestra. He's also, "an active participant in family life," says Mr Lewis, who also serves as the President of the Autism Society of British Columbia. "Whatever we do, he's part of it."

Last November, Mr Lewis was flabbergasted when the Supreme Court ruled that British Columbia doesn't have to pay for a treatment known as Applied Behavior Analysis(ABA, also called IBI or Intensive Behavioral Intervention) despite its palpable benefit for autistic kids. Mr Lewis credits this treatment with giving his son the chance at a pretty normal childhood.

The Supreme Court's decision hinged on the idea that healthcare, including ABA/IBI therapy, is a matter of provincial jurisdiction — thus the provinces have the right to prioritize spending. But to Mr Lewis, the decision sent another message. "My child's right to be a productive citizen was denied," he says. "Universality is not what I thought it was."

A recent case before the Superior Court of Ontario took a very different approach to treatment funding than the Supreme Court. In his ruling in early February, Justice Lee Ferrier cited fair access to education, rather than healthcare, as justification for government funding, finding that ABA/IBI treatment for three autistic children in Ontario was essential to their thriving in school.

This treatment doesn't come cheap. Mr Lewis estimates the annual cost of his son's therapy between $25,000 and $30,000. For some families, the price tag is as high as $60,000 a year.

But if his son's treatment was stopped, Mr Lewis is convinced the child would need to be institutionalized, possibly immediately. "If not now, then shortly," he says. "Why should a parent have to bankrupt themselves? Unless you're making a serious salary this is a huge burden."

The amount of available government funding for autism treatment varies widely from province to province. In British Columbia, for instance, Mr Lewis' son qualifies for $6,000 in annual government money. Until the age of six, the province will pay up to $20,000. In Ontario, by comparison, funding is only available until the age of six, and then only after approval by a provincial board.

Margaret Spoelstra is executive director of Autism Society Ontario. She estimates that only about half of the families who apply for funding in the province are ultimately approved. And of those whose children are approved, many spend crucial months or years waiting for a coveted spot to open up in a treatment program. Ms Spoelstra said it is not unheard of for a child to turn six, therefore being disqualifed for funding, without ever seeing the end of the treatment queue.

Two of Claudio Del Duca's three sons are autistic. Gabriel, aged 13, and Raphael, 11, were each around three years old when they were diagnosed. At that time, ABA/IBI treatment was not readily available in Windsor, where the family lives, so Mr Del Duca, now president of Autism Society Ontario, and his wife, Michelle, did their own research, eventually adopting a system that employs picture symbols to communicate.

Today, both boys go to public school, and have education assistants to help them with certain tasks.

Mr Del Duca says that ABA/IBI is not a silver bullet. Instead, he wants to see a government-funded program put in place that includes ABA/IBI, but is customized to fit the needs of each child.

"What Ontario needs is an integrated system," he says, "one that covers zero to 18 or zero to life."

According to estimates from Autism Society Canada, around 200,000 Canadians have some form of ASD. And it looks like the public is concerned — according to an Ipsos-Reid survey released late December, 89% of Canadians think their provincial government health plan ought to cover the costly ABA/IBI treatments.



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