Ontario mother spends $200K on autism therapy due to long wait times for public funding

The waitlist for core funding has more than doubled since the Ford government tried to revamp the Ontario Autism Program. As Cynthia Mulligan reports, families are asking for transparency as the wait for many has already been years.

By Cynthia Mulligan and Meredith Bond

Families of children with autism are accusing the Ford government of ignoring their pleas for help, with 60,000 children and counting now on a wait list for core services in Ontario.

One single mother told CityNews she’s been forced to drain her savings and spend up to $200,000 out of pocket to pay for her son’s Applied Behavior Analysis (ABA) treatment herself.

Sophie Barrette’s son Dax was 19 months old when he was diagnosed with autism. Now five years old, Barrette said Dax is thriving thanks to private ABA therapy. But Barrette doesn’t know how she will continue to afford his therapy if the government doesn’t help her. The family has received two one-time payments of $20,000, but it only paid for four months of therapy.

“Families like mine are forced to have a mortgage, drain your savings on credit, do whatever you have to do so that you’ve tried to really make this time meaningful because time is not on our side,” explained Barrette. “It’s not something that we can wait for. There’s that period in early intervention where it’s going to make the biggest impact.”

Dax was added to the waitlist for core services in 2019, but his family still has no sense of how long they’ll have to keep waiting. He is one of 60,000 children on the waitlist, which has more than doubled since the Ford government tried to revamp the system in 2019.

“I think this is the biggest concern with the autism community is that we don’t know. There’s no transparency. There’s no accountability. We are in the dark,” Barrette said. “We have no sense of what number my son is amongst the waitlist.”

The Ontario Autism Coalition (OAC) echoes the calls for more transparency. The OAC said they want to see the Ministry of Children, Community, and Social Services meet with them and share more information on what is happening.

“Three different ministers and yet there is still no one regular source of information about all of the changes that have taken place. It is not surprising then that autism families in Ontario are confused, unable to resolve administrative issues or are completely out of the loop. And it’s unacceptable,” said Kate Dudley-Logue, Vice-President of Community Outreach at the OAC. “A program cannot be world-leading if families cannot access it.”

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Minister of Children, Community, and Social Services Merrilee Fullerton has said that as of January, every child on the list has been invited to gain access to the program.

But that doesn’t mean they are receiving funding.

“My son was registered with the Ontario Autism Program in July 2017. We were lucky enough to receive our invitation to core services in October 2022,” Sara Kitlar-Pothier, whose 10-year-old son has autism, told CityNews. “It’s March 2023. And I have no funding. I have no support for my son.”

Families hoped to speak with Fullerton when they were at Queen’s Park Monday, but she did not meet with them, nor did Fullerton speak with media.

A spokesperson for Fullerton told CityNews in a statement, children may be able to access a variety of other programs.

But Barrette said the lack of knowledge of when her son may come off the waitlist has made it tough to plan their lives.

“They need to start answering to know what the targets are so that families can plan accordingly. If my son will be off the waitlist at the end of this year, then I can try to stretch my finances as much as possible. To keep going to therapy. If this is going to be two or three years, then I may have to take a different route altogether. So we need to be able to plan our lives,” Barrette said.

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