Parents losing trust with Ontario government as autism program waiting list grows

After three different ministers and more than three years of delays, some parents of children with autism in Ontario say they've lost trust in the provincial government to deliver a long-awaited program to support their kids.

Since scrapping the former Ontario Autism Program in 2019, the number of children registered and waiting to enrol in the new program to receive essential "core services," like applied behavioural therapy and speech language pathology, has grown to more than 50,000, according to the provincial govenrment's own figures.

So far, only 600 children have been invited to participate in the needs-based program.

"I don't think this government's going to make good on their promises. They've missed every single self-imposed deadline and every single self-imposed target. Every single one," said Alina Cameron, the vice-president of research and the northern representative on the Ontario Autism Coalition from Thunder Bay, Ont. 

While many families received interim funding during the pandemic — $20,000 for children five and younger, $5,000 for children aged six to 17 —  for most, that money has long run out, Cameron said. 

That's the case for her family. Cameron's daughter Fiona turns seven in December, and has already been on the waiting list for the Ontario autism program for four years.

Cameron said her family accessed the one-time interim funding last year at the outset of the pandemic, and received $20,000 because Fiona was under six. They received a $5,000 top-up a year later, after her sixth birthday.

That's a far cry from the $90,000 that makes up the total annual bill for Fiona's behavioural therapy. Cameron said her family pays for as much as they can out-of-pocket, because the therapy is essential.

"Without it, she can't learn not to run into the street. She can't learn what is dangerous and what isn't," Cameron said. "This opens doors to everything in her life. It's critical."

Not only are families scraping by to get their children as many supports as they can, Cameron says families in northern Ontario are facing additional barriers to get the care they need. 

For one, families living in rural areas have to drive long distances just to access care. 

Adrianna Atkins said she spent a lot of the pandemic at home in Manitouwadge, Ont., about 400 kilometres northeast of Thunder Bay, with her six-year-old son Marshall.

"He's obsessed right now with the solar system. He has this little whiteboard with markers and he'll write all the planets in order and in the colours that they are," she said. 

Marshall requires intensive behavioural therapy, which Atkins said she can only get in Thunder Bay.