Only 20 per cent of registered kids got needed autism therapy by end of 2023

EDITOR’S NOTE: This article originally appeared on The Trillium, a new Village Media website devoted to covering provincial politics at Queen’s Park.

Just one-in-five children registered for the province's autism program had been given funding for core therapy by the end of last year, new records show. 

Data obtained by The Trillium through a freedom-of-information request shows 67,306 children were registered for the Ontario Autism Program as of Dec. 31, but just 13,939 had received funding for core clinical services — a cornerstone of the program. 

The number of kids registered to receive core services is higher — 17,120 children by Dec. 31 — but this figure is cumulative and includes those who are waiting for a determination of needs interview and a funding allocation or who aged out of the program since the latest iteration launched in March 2021, another document received through an FOI request shows.

The government aimed to have around 20,000 children and youth enrolled in core clinical services by the end of this month — a goal the premier and the office of the minister responsible for the file confirmed the government has reached. 

Advocates say while the numbers indicate progress, they're concerned that just a fraction of the children in the program are getting access to core services and worry about what happens now that the government has met its target of 20,000 kids. 

"I'm glad that (the ministry) is making some progress ... but the fact of the matter is 14,000 have funding, there's over 67,000 registered for the program — that's the discrepancy that worries me the most," said Alina Cameron, president of the Ontario Autism Coalition (OAC) advocacy group. "You're helping less than a quarter of children presently registered for the program, that's not good."

Cameron, who has a daughter with autism, said families registered and needing core services are sometimes left waiting five to seven years, and with the first five years of a child's life being critical for development, "you're missing out on that child's opportunity."

The government has estimated that around 20,000 children and youth would be able to receive core services under the program's 2023-24 budget of $667 million, according to Minister of Children, Community and Social Services Michael Parsa's March 2023 transition binder, which was posted on the OAC's website. 

"There is a huge question about what happens after that," said Cameron. "The program is only good for less than a third of the children who need it — this is not a world-class program."

Bruce McIntosh, former president of the OAC, said he was concerned "we're going to come to a screeching halt sometime this year," once the government reached its target. 

Both said it's been a slow road and they would have expected the government to enrol 20,000 children in core services much sooner. 

"I'm shocked. Three years, it should be 24,000," he said. "They've really dawdled, there's no way to look at this to say that it's adequate."

Neither Parsa's office nor the ministry would say exactly how many kids have been enrolled in core services to date, with Patrick Bissett, spokesperson for Minister Parsa, just noting on Friday that the "ministry has achieved its goal of 20,000 families enrolled in (core clinical services) by March 2024.”

The ministry added that the timing of invitations for core services depends on the number of families that accept invitations and the number of youth who age out of the program, as well as the varying needs of the children enrolled and the amount of funding they receive. 

“As the timing of families accepting invitations is also one of the factors that impact how quickly new invitations can be sent out, in November 2023 core clinical services invitations were updated to ask families to respond to the invite within 45 days," said Bissett. "If no response is received within 45 days, families registered in the OAP can continue to access other OAP services and supports and a new core clinical services invitation can be requested."

Core clinical services include applied behaviour analysis, speech-language therapy, occupational therapy, mental health services and technology, such as therapy equipment. Funding for core services ranges from $6,600 to $65,000 depending on a child's age and their level of need. 

Determining kids' needs

The Ford government has made many changes to the autism program since taking office, with the first major overhaul in early 2019 resulting in widespread protests from families. In February 2021, Todd Smith, who took over the Ministry of Children, Community and Social Services from Lisa MacLeod, said the new program would launch the following month with 600 children and would be expanded to 8,000 kids by the end of the year.

The rollout was delayed, with the government saying in December 2021 that it aimed to provide "8,000 children with funding for core clinical services by fall 2022."

According to the FOI data, the ministry didn't hit that target until sometime between January 2023 and June 2023. The cumulative data indicates that 14,694 children have been allocated funding through the program as of the end of 2023, with a slightly higher number — 14,743 children — having gone through the determination of needs process. 

McIntosh, who quit his job as a staffer in a Progressive Conservative MPP's office in response to the 2019 autism program overhaul, said it would be helpful to know how many of the children receiving funding are actually in therapy. He said many families, particularly those in rural and northern areas, can't find a place to use their funding due to wait lists or a lack of providers. 

Both McIntosh and Cameron said there is often a long wait for the determination of needs interview to be booked, which could explain the large difference between the number of children registered for core services and those who have gone through the determination of needs interview. 

"That means that there are several thousand families in queue for the determination of needs meeting," said Cameron. "We know when talking to families that they're presently booking (these) into the end of this year, into next year already in some circumstances."

The other issue, they said, is that children in core services are required to go through a determination of needs interview each year, something the OAC wants the government to reduce. 

The needs determination process involves care coordinators conducting an interview with families on a child's strengths, needs and goals in 10 areas: "communication, social interaction, play and leisure, activities of daily living, motor skills, cognitive skills, sensory system, interfering behaviours, mental health and adaptability and resilience," according to the AccessOAP, the organization overseeing the process that determines how much funding a child will receive. 

The determination of needs tool is not public, though David Vahey, who has an 11-year-old son with autism, tried to make it so.

In a process born out of "frustration" and a lack of information for families, Vahey filed an FOI to the ministry a couple years ago for the criteria the government was using to determine the level of core services funding a child should receive.

"There was no information, it was just completely untenable and unrealistic for parents," said Vahey. "Autism is really complex, each kid is different."

The ministry refused to release the tool, citing an "economic and other interests" exemption. 

Vahey appealed, with the Information and Privacy Commissioner (IPC) recently upholding the ministry's decision in a March 4 decision. The adjudicator summarized the ministry's reasons for not sharing the tool, including the desire to "safeguard the process and ensure responses are truthful and accurately reflect the child’s current support needs."

The ministry said that it would have to create a new tool if the current one was made public, arguing that the "disclosure of the records would reasonably result in harm to the financial interests of Ontario as the disclosure would enable abuses of the program and impose remediating costs for the relevant institutions and Ontario generally."

Vahey was disappointed in the assumption that parents of children with autism would try to game the system.

"People steal cars, it doesn't stop people from driving cars. You can't stop the fact that people want to steal cars. I can't do anything about it. I'm not guilty for it," Vahey said, adding that his request came down to wanting the questions for the interview to help parents better prepare. 

He is asking the IPC to reconsider the decision. 

Cameron said she was disappointed in the IPC's ruling, but applauded Vahey's efforts. 

"It's disappointing because this tool is new, it's uncontested and we know that it's missing the mark ... with so many families," she said. "And having been through the tool twice now, it is brutal. You have to speak negatively about your child for four hours in an effort to express their need and try and get the amount your child deserves for services."

Other OAP supports by the numbers

The government has often said its autism program is "serving more children and youth than ever before," with Bissett, Minister Parsa's spokesperson, saying that around 42,000 children and youth aged 0-17 have got some sort of support through the various program streams, including entry to school supports and interim funding, among others. 

Of the children and youth registered in the program at the end of last year, 26,757 had received one-time funding ($22,000 or $5,500, depending on age), 4,628 had used the caregiver‐mediated early years program, and 4,785 had enrolled in the entry-to-school program.

The foundational family services program was used more than 18,000 times between April 1 and Sept. 30 last year, while it was 603 times for urgent response services during a three-month period starting last April (these numbers are provided on an aggregate basis, not by individual children or youth).

Breakdown of children and youth registered for the Ontario Autism Program (OAP) as of December 31, 2023 by the services they received

Both McIntosh and Cameron said their ask is to get more kids into core services, with McIntosh saying this either requires more funding or a rejig so that more dollars go toward core services rather than the other supports. 

"I'm not going to say those things aren't meaningful or important, but they're spending money on a whole bunch of things that aren't core to addressing the central deficits of autism," he said. 

Asked by The Trillium last week whether the government was considering boosting the program's budget so more kids could enter service, Premier Doug Ford didn't say. 

He said the government has boosted funding for the program and that he speaks with families regularly. 

"It's up to 20,000 now and and we've increased funding since I took office," said Ford. "We're going to continue supporting families that have children with autism ... and we're doing everything we can to support them."

The provincial government will release its budget on March 26.