Sudbury parent not impressed with Ontario's latest autism services program

A Sudbury parent says Ontario's new autism services program is more of a pilot project and will do little to help those looking for a needs-based system.

The province announced Wednesday that it will launch the program in March for 600 children, following months of delay.

Sara Kitlar-Pothier's seven-year-old son has autism, and she says the program is not what parents have been asking for.

"We're not really getting a needs-based system. There will be caps on age and the amount of funding available, which is quite devastating. We're looking at another generation of kids who are potentially being left behind," she said.

"We've been promised this needs-based system, a therapeutic system. [But] they're basing it on their age and minimums and maximums of funding."

Social Services Minister Todd Smith says the program will include applied behaviour analysis, speech language pathology, and occupational therapy, and will expand through the year to include 8,000 more children by the end of 2021.

He noted that the phased approach will allow the government to refine the program.

"This isn't easy work," he said, adding that the program's launch had been slowed by the pandemic.

"No government's ever gotten this right. And we want to ensure that we never have to come back here, to start from scratch."

Kitlar-Pothier says the age factor and caps are still present in the new program.

"So what's going to be happening starting in March is that 600 children — out of the over 40,000 who are on the wait list for needs-based therapy — will be testing the new needs-based assessment tool. This tool is going to determine how much money and how much therapy our children will need," she said.

"[Smith] did make mention today that certain things will be incorporated, such as communication, social interaction skills, cognitive skills, sensory system, interfering behaviours and mental health, just to name a few, but we really don't know what this tool will look like. And right now, it's going to be applied by a care co-ordinator who is not a clinician and it will be a standardized tool."

Interim funding renewed

Kitlar-Pothier acknowleges that interim funding has been renewed to pay for therapies until the new program is up and running. 

"We've been receiving funding based on our children's age and not on their needs, and that will continue," she said.

"And that's really difficult for a lot of people because it's not matching with their clinical needs. They also mentioned initiating a proposal for urgent services, which is long overdue. My son has been waiting since early 2017 for therapeutic needs-based therapy."

Kitlar-Pothier says she's frustrated by the ongoing delays.

"What's happening in March is not the start of the needs-based program. We're starting to test the tool — which just means more delays for families, more delays for the therapy they need. More regression. It's very overwhelming, and a lot for parents to take."

Last July, Ontario's fiscal watch dog said the government would need to more than double the funding for child autism services if it hoped to fulfill its goal of eliminating a long-standing waiting list for treatment.

Financial Accountability Officer Peter Weltman said in a report that the 2019-20 waiting list stood at 27,600 children, up from 25,900 in the 2018-19 fiscal year.

Weltman's report, which examined three different funding options ahead of the government's planned program launch, concluded the $600 million currently allocated to the effort won't be enough to eliminate the wait list entirely.

Providing the province's estimated 42,000 autistic children with service will cost more than double that amount, he said at the time — an estimated $1.35 billion in the first year of the program.