Some parents of severely autistic children say they are profoundly disappointed with Canada’s new national plan for autism — which provides no specific timelines or funding for improving treatment and care.
“Not one child on the waiting list for treatment will be taken off the waiting list … as a result of this autism strategy,” said Jamie Peddle, a Brampton, Ont. father who says his 12-year-old son Jacob has only received a fraction of the support he needs.
In Peddle’s province of Ontario, the waitlist for basic, government-funded therapy autism services has grown to more than 73,000. Health Canada says it’s important for autistic kids to get treatment, including behavioral and speech language therapy, as early as possible.
“Instead of helping kids get access to the treatment they need, the most the government is willing to do is create new consultation 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 revealed its Framework for Autism and a separate Autism Strategy. It also announced it would create a new National Autism Network, aimed at helping Ottawa implement the framework and strategy.
But the Canadian Autism Treatment for Medicare Coalition says that network — which the federal government will spend $6.5 million to create — has no deadline for coming up with a plan to introduce the framework and strategy.
“We’ve had enough of postponement and procrastination,” said Andrew Kavchak, an Ottawa father whose autistic son Steven is nonverbal and needs 24/7 supervision and assistance.
Jamie Peddle, founder of the Canadian Autism Treatment for Medicare Coalition, says his severely autistic son has only ever received ‘a mere fraction’ of the treatment he needs. Peddle says he worries about his son’s ‘uncertain future’ when he is no longer able to take care of him.
Kavchak said the strategy does nothing to address the shortage of spots in group homes — a service families need when parents become too old to care for autistic children at home.
“Steven is now 23 and my family’s primary concern for his future is housing and care,” Kavchak said. “Our only option is to have him placed in a group home with appropriately trained staff where he could be safe and lead a life with dignity.
“I’ve basically been told I’m going to be taking care of my son until I can no longer do so, which means either I get cancer, I get too sick, or I die.”
The strategy doesn’t set targets for creating new group home spots, reducing current wait lists or allocating funding, Kavchak said.
While health care falls under provincial jurisdiction, the parents say that hasn’t stopped the federal government from funding other areas where there are gaps in health coverage.
“The federal government has been specifically earmarking and tagging 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 thing 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 that would compel provinces and territories to fund the care as they do doctors and hospitals.
The Canadian Autism Treatment for Medicare Coalition points to a 2016 Liberal Party policy resolution which recommended that treatment for autism spectrum disorder either be included under the Canada Health Act or funded directly by the federal government. Party resolutions are not binding but are meant to direct a political party’s members of Parliament on policy priorities.
Health Minister Mark Holland said he understands the families of autistic kids want Ottawa to move as fast as it can to improve services. One in 50 Canadian children are now being diagnosed with autism.
“I get it,” Holland said Monday outside of the House of Commons. “If I were in their shoes and that was my family, then it wouldn’t be enough for me either. So I understand their frustration.”
Minister of Health Mark Holland responds to criticism of the federal government’s new framework and strategy for autism, released last month. Holland says the documents are meant to be ‘the starting line, not a finishing line.’
The framework and the strategy together constitute a “really important first step,” Holland said.
“I was very careful not to hold it out as more than that,” he said. “It gives us the compass and the map of where we need 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’re continuing to take action,” he said. “This is the starting line, not a finishing line.”