More than 67,500 Ontario children wait for key autism funding as demand grows

One of the first things Denny Soto was told after his son was diagnosed with autism was “Get on the list.”

The Toronto mom didn’t really know what she was signing up for in 2022, but she listened. Now, four years later, her nine-year-old son Nico Tsirigiotis is still on the list waiting for government funding for key autism services. Those services may include occupational therapy or applied behavior analysis.

“It’s extremely sad, because this was an important part of his development,” Soto said.

“We lost the support we could have had during that time. So we did it on our own, we looked for alternatives… but I don’t know what we lost.”

According to government records obtained through a Freedom of Information (FOI) request, Nico is one of more than 67,500 children with autism across the province who are waiting for funding for core clinical services through the Ontario Autism Program.

CBC News reviewed more than a year of bi-weekly progress reports for the program from late June 2024 to early January this year. The documents show the total number of children registered and seeking funding for core services, and how many of those children actually have access to that funding for services such as speech-language pathology and occupational therapy.

Despite increases in provincial funding in recent years, the percentage of Ontario children with autism registered with the program and receiving funding has still not reached 25 per cent as of a January 7 progress report – as demand for funding continues to grow.

21 percent jump in demand

The number of children registered since mid-2024 has increased by 21 percent to 88,175 this January. Only 20,666 of those children have a funding agreement for services.

Last year, a survey conducted by the Ontario Autism Coalition found that Parents were on the waiting list for at least five years Before receiving the money. In practical terms, the president of the advocacy group says this means many parents miss out on early intervention.

“When your child is diagnosed one of the first things they tell you is that early intervention is important,” said Alina Cameron, president of the Ontario Autism Coalition.

“You wait 5.2 years to have access to something that is running and compatible… you miss the entire early developmental window.”

Cameron’s 10-year-old daughter Fiona registered in the program in 2017 and was on the waiting list for five years. It now has access to funding for three years.

“It’s been a complete game changer,” said Cameron, who lives in Thunder Bay, Ontario.

“We saw immediate changes…she started retaining information, and now we’re seeing speech development, and it’s all on her own time, but she’s like a brand new baby instead of standing in the middle of the kitchen having a meltdown because she can’t tell us what she wants and we can’t understand her.”

Cameron doesn’t think children with autism should have to wait years for funding to get the help they need.

The province has pledged $186 million in new funding this year

Last week the Ontario government announced $186 million in new funding for the Ontario Autism Program as part of the province’s annual budget. Those additional funds bring annual funding to $965 million, which the budget says will “enable more children and young people to access core clinical services.”

In a statement, the Ministry of Children, Community and Social Services told CBC News the number of children in core clinical services has tripled under his government. The ministry also said that certain resources, such as basic family services, immediate response services, caregiver-mediated early years programs and access to school programs, are accessible to all families registered with the Ontario Autism Program.

Cameron says her organization appreciates the increase in funding, but she’s concerned it’s not enough, and she wants the province to commit to providing all new funding for core clinical services to families.

“Last year’s increase had no impact on the main waiting list,” he said.

Spencer Carroll’s six-year-old son was diagnosed with autism when he was 14 months old. An Ottawa father and his wife are paying for key services as they wait for government funding. He says this September he will have been on the waiting list for five years.

“We’re probably going to have to spend about $100,000 out of pocket for private services and we’re one of the lucky few that can afford it,” Carroll said.

While navigating the system, Carol noticed a lack of comprehensive resources for parents and created the website with her technology background end the wait ontarioWhich brings together resources and data obtained on the Ontario Autism Program through their own FOI requests. But even then, he says it’s impossible to get a complete picture of how the program is being run.

“We need to know where the waiting lists are, we need to know how many children are being diagnosed because of the backlog to these diagnostic centers…we also need to know where the funding is going,” Carroll said.

“Only through accountability can we see whether these funds are being deployed responsibly and know whether they are effective.”

At the moment, most of the available information comes from filing FOI requests for progress reports received by CBC News over the past year and a half.

Report shows decline in number of children receiving funding

In that time, there were a half-dozen updates where the number of kids receiving money dropped despite hundreds more kids registering with the program in the same two-week period. For example, last summer was a period when the number of children with active funding agreements declined by 151 children, while an increase of 456 children registered in the program.

CBC News asked the ministry why there are times when the number of children receiving funding for services decreases, but their statement did not address the issue.

Cameron said the reason for older children being left out of the program is because the province is not acting quickly enough on children waiting for funding to expand their numbers.

“Less than a quarter of the children registered at any one time have access to that fundamental program – that’s very troubling,” he said.

Soto hopes that when her son Nico finally gets access to funding it will help make his world a little less lonely.

“He often does things on his own because we don’t have other options,” Soto said.

“So for me, it’s like opening up a whole new world for him.”