Children with autism at risk from Ontario’s years-long therapy wait-lists

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Nearly 100,000 children in Ontario face years-long waits for publicly funded physical, occupational and speech therapy, putting many of them at risk of lifelong problems with communication, mobility and other essential life functions, according to the chief executive officer of Empowered Kids Ontario, an organization that represents public therapy centres.

Many of the children on the province’s wait-list for these services have autism, or are awaiting a diagnosis. The CEO, Jennifer Churchill, said there is an urgent need to provide the system with more funding to reduce the lengthy delays facing tens of thousands of families.

The wait-list is maintained by individual therapy centres, and not the provincial government. It is distinct from another Ontario wait-list for core clinical services for children diagnosed with autism spectrum disorder. That list is maintained by the Ontario government, but officials will not disclose its size. Advocates such as the Ontario Autism Coalition have said it has ballooned to more than 60,000 children, and that families are being forced to wait years for funded treatments. Some children may be on both lists.

Delays and access barriers for autism-related diagnoses and treatments are an issue in many parts of Canada.

On Tuesday, federal Health Minister Jean-Yves Duclos announced that his government will give up to $500,000 to the Autism Alliance of Canada to help it develop a national network that would support the implementation of a national autism strategy.

Child health experts and advocates say Ontario’s system is facing a particularly acute crisis, in part because of the province’s 2019 decision to overhaul the way families apply for and receive funding for essential therapies.

Instead of relying on physicians to refer patients to publicly funded community therapists, Ontario Premier Doug Ford’s government opted to create a market-based system. Now, a family has to wait for a diagnosis, apply for funding, undergo a lengthy process to determine how much money is needed for their child, find a therapy provider, and then use the funding to pay them directly.

Ms. Churchill said the change has led to the current years-long waits and, in many cases, a lack of access to care.

“In the delivery of children’s health care, moving to a market model is a seismic shift,” she said. “In other words, families are going shopping for their children’s health care.”

Ms. Churchill said there are several positive aspects to the new system, such as an entry-to-school program that can help autistic children prepare for the challenges of kindergarten.

But she added that the system is overwhelmed and underfunded. As a result, she said, many autistic children are missing the critical window for early intervention, which can have lifelong impacts.

“We know that earlier intervention results in better outcomes,” said Olaf Kraus de Camargo, co-director of the CanChild Centre for Childhood Disability Research at McMaster University in Hamilton. “These windows of opportunity close and it becomes much more difficult to acquire new knowledge.”

Dr. Kraus de Camargo said children in Ontario often have to wait two years before they can even receive autism diagnoses, because there aren’t enough pediatricians to meet the demand. He added that the move to a system where parents have to find a therapist for their child, instead of having a physician referral, makes it harder for some children to get the care they need. He and other child disability experts say that under this new system some private providers refuse to take on children with severe behavioural problems.

“That’s what happens when you privatize stuff instead of offering therapies within a system, like you do in the health care system,” Dr. Kraus de Camargo said.

In Ontario, autism is overseen by the province’s Ministry of Children, Community and Social Services. The ministry said in a statement that the government has invested $660-million in Ontario’s current autism program, and that under it more children and youth will receive needs-based support “than ever before in Ontario.” But the ministry declined to say how many children are on the wait-list for core clinical services, or what is being done to address the backlog.

Alina Cameron, who lives with her family near Thunder Bay and is the president of the Ontario Autism Coalition, has experienced many of the drawbacks of the province’s system while trying to get help for her daughter. Ms. Cameron’s daughter went on the wait-list for funded autism therapy in October, 2017, just before her third birthday. Last December, her funding finally came through. By that point, she was seven.

Although there were a few publicly funded programs available during the long wait, Ms. Cameron said they were spotty and fell far short of the comprehensive care her daughter needs in order to meet her potential.

“The gains we often made were lost because it was go, stop, go, stop. She just needs consistency,” Ms. Cameron said.

Ms. Cameron’s daughter has severe communication challenges that make her unable to articulate when something is wrong, or communicate her needs. She is not toilet trained, has no sense of danger and has sleep problems.

“I don’t think the average Canadian understands what a different lifestyle special needs families have,” Ms. Cameron said.

“It takes years off your life, living in chronic stress,” she added. “It’s not just the stress about the moment, it’s the stress of knowing that there’s something out there and you can’t access it for your child. You feel like it’s your fault and it’s not.”

Editor’s note: Alina Cameron is president of the Ontario Autism Coalition. A previous version of this article included incorrect information. This version has been updated.