Canada’s new autism strategy does nothing to address the treatment gap, families say

Some parents of severely autistic children say they are deeply disappointed with Canada’s new national plan for autism — which provides no specific timelines or funding for improving treatment and care.

“No child on the waitlist for treatment will be taken off the waitlist… as a result of this autism strategy,” said Jamie Peddle, a Brampton, Ont. father who says his 12-year-old son Jacob has received only a fraction of the support he needs.

In Peddle’s province of Ontario, there is a waiting list for publicly funded basic autism therapy grown to more than 73,000. Health Canada says it is important that autistic children receive treatment, including behavioral and speech therapy. as early as possible.

“Rather than helping children access the treatment they need, the most the government is willing to do is create new consultative bureaucracies to share information,” Peddle said.

In 2019, the federal government promised a national plan to improve the lives of people with autism. Last month it unveiled its Framework for autism and a separate one Autism Strategy. It also announced it would create a new one National Autism Networkfocused on helping Ottawa implement the framework and strategy.

But the Canadian Autism Treatment for Medicare Coalition says the network — which the federal government will spend $6.5 million to set up — has no deadline for coming up with a plan to introduce the framework and strategy.

“We’re fed up with procrastination and procrastination,” says Andrew Kavchak, an Ottawa father whose autistic son Steven is non-verbal and needs 24/7 supervision and assistance.

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Jamie Peddle, founder of the Canadian Autism Treatment for Medicare Coalition, says his severely autistic son has received “just a fraction” of the treatment he needs. Peddle says he worries about his son’s “uncertain future” if he can no longer care for him.

Kavchak said the strategy does nothing to address the shortage of spots in group homes — a service families need when parents grow too old to care for autistic children at home.

“Steven is now 23 and my family’s main concern for his future is housing and care,” Kavchak said. “Our only option is to place him in a group home with properly trained staff, where he can be safe and live a dignified life.

“I was basically told that I’m going to take care of my son until I can’t anymore, which means I either get cancer, get too sick, or die.”

The strategy does not set goals for creating new group homes, reducing current waiting lists or allocating funding, Kavchak said.

Although health care falls under provincial jurisdiction, parents say that hasn’t stopped the federal government from funding other areas where there are gaps in health care coverage.

“The federal government has specifically earmarked and tagged funds for specific medical services,” Kavchak said, pointing to Ottawa’s spending on mental health and dental care.

“But every time we ask, ‘Can you do the same for autism?’ We’re always told the same thing: ‘Oh, it’s provincial.'”

The parents say Ottawa could use its authority to cover autism treatment under Canada’s universal health care system. They say this would force provinces and territories to fund care, just like doctors and hospitals do.

The Canadian Autism Treatment for Medicare Coalition points out a 2016 Liberal Party Policy Resolution which recommended that treatment for autism spectrum disorders be included in the Canada Health Act or funded directly by the federal government. Party resolutions are not binding, but are intended to provide a political party’s parliamentarians with direction on policy priorities.

Health Minister Mark Holland said he understands that the families of autistic children want Ottawa to take action as quickly as possible to improve services. One in fifty Canadian children is now diagnosed with autism.

“I understand,” Holland said outside the House of Commons on Monday. “If I were in their shoes and that was my family, it wouldn’t be enough for me either. So I understand their frustration.”

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Health Minister Mark Holland is responding to criticism of the federal government’s new autism framework and strategy, which was released last month. Holland says the documents are meant to be “the starting line, not the finish line.”

The framework and strategy together represent a “really important first step,” Holland said.

“I was very careful that it would not be more than that,” he said. “It gives us the compass and the map of where to go.”

Holland said while the federal government is taking responsibility and pushing for various health issues, the provinces and territories also have a responsibility to improve autism care.

“We will continue to take action,” he said. “This is the starting line, not a finish line.”