Parents of children with autism in Ontario want clarity and funding

Parents of children with autism and service providers told local MPPs there's an urgent need for details about the future of the program.

More than 30 people attended a meeting about the future of the program

Sophie Barrett, whose 21-month-old son has been diagnosed with autism, said she wants the Ontario government to provide needs-based services for children on the spectrum. (Matthew Kupfer/CBC)

Parents of children with autism and service providers say it's important for the Ontario government to be clear about its new program and deliver the long-awaited services and funding children on the spectrum need.

Late last month, the Ontario government backed off its unpopular plan to provide parents with a fixed amount of funding per child and instead pursue a needs-based program.

Sophie Barrett, whose 21-month old son was diagnosed in April, said watching the back-and-forth on the policy has been stressful.

"Very chaotic, very difficult," she said.

"We don't know what's going on. We're essentially just funding our private therapy right now and don't have much hope our son will get what he needs through this government any time soon."

Even with the recent reversal, she said access to services have yet to improve.

She wants the priorities to be early intervention and a needs-based model, where children get the mix of services they need covered by government.

Needs and long waits

Barrett was among more than 30 people who attended a meeting hosted by Carleton MPP Goldie Ghamari and Ottawa–West Nepean MPP Jeremy Roberts, who is also the parliamentary secretary to the minister of social services and tasked with the file.

More than 30 people, including affected parents and service providers, attended a meeting at a rural south Ottawa Royal Canadian Legion Branch hosted by local MPPs on the future of the Ontario's autism program. (Matthew Kupfer/CBC)

Bradley Dekleer's five-year-old son was diagnosed three years ago and has yet to receive a funded treatment.

"It really doesn't make a difference what the program is, if you don't receive anything. It doesn't matter if the program's great or bad — you're waiting," Dekleer said.

The province is still working through the waitlist for childhood budgets.

It's sending out 1,000 notices to parents on how to access their funding this month, with more to come as it develops the program that will replace the system. 

Roberts told the room the government is providing a cushion as it moves to a new program, though he said it's "an imperfect solution."

Ottawa-area MPPs Goldie Ghamari and Jeremy Roberts held a consultation on changes to provincial childhood autism services at the Richmond Royal Canadian Legion Branch. More than 30 people attended. (Matthew Kupfer/CBC)

He also said fighting for services for his brother who has autism was how he first became involved in politics.

"I know that there's an urgency here, but my message back to families is that we need to get this right once and for all," he told CBC. 

"I don't want to keep seeing a situation where we have a new program coming out every four, five, eight years and families get thrown into disarray."

Challenge for providers

Leigh Giles, clinical director at private services provider ABA Connections, said the changes in the program have made it difficult for parents to plan.

"It's really confusing for families," she said.

"The reality is that those [per child funds] aren't coming as quickly as we want to. It's just really tough to provide the services that we want for the families at the intensity and the needs that they need because they just can't afford the services."

Leigh Giles, clinic director at ABA Connections, said she wants Ontario to regulate service providers and funding for children based on their therapy needs. (Matthew Kupfer/CBC)

Giles said her company has not had to go through layoffs, though other providers have.

The Ontario Autism Advisory Panel is expected to provide a report in the fall with a new program to roll out by April 2020.