London families trapped for years on Ontario's autism program waitlist speak out
The wait is exhausting, frustrating and expensive, say parents
After more than four years waiting for funding for autism supports for her son, Sarah Farrants has had enough.
"It is exceedingly frustrating," said Farrants, whose seven-year-old son Mason joined the Ontario Autism Program (OAP) waitlist in November 2018 after waiting another year and a half for a diagnosis.
Right now, this wait is still "indefinite," she said. "We could be looking at another year."
The waitlist for autism services reached about 50,000 children in 2020, according to provincial figures. The Ontario Autism Coalition launched the 50 K is not OK campaign last year to highlight figures that it says has doubled under Doug Ford's government.
Early intervention is key
Farrants said waiting has cost her son years of access to social workers, funding and therapeutic programs.
Farrants decided to enroll to train in different therapies and interventions in order to fill some gaps, but that's meant she hasn't been able to leave her home for work in five years. Mason is now too old for daycare, and before and after school programs haven't been able to accommodate his one-on-one support needs, she said.
The frustrations with the OAP drove Farrants to consider moving from Ontario.
"We looked into how much it would cost to pretty much pack up our entire lives," she said. She spent six months researching autism supports in others provinces and contacting family doctors and moving companies.
"The one thing that we haven't been able to lose is our community and our support. That is essentially the only thing that stopped us from [moving]," said Farrants, who eventually decided to stay put in Ontario.
'It's exhausting. It's frustrating.'
Londoner Jessica Ashton's nine-year-old son has been on the OAP's waitlist for more than six years — since he was two and a half years old. She was already speaking out about the wait at Queens Park five years ago.
"When my son first got diagnosed, I was horrified to hear that the waitlist would be around four years. Now, they're hitting more than six years," said the founder of the Autism Advocacy Group.
"It's a hard pill to swallow to know you've put so much energy into advocating and you want your voice to be heard, and to think that it's only getting worse," she said. "It's exhausting. It's frustrating."
The wait is also expensive, said Ashton, who spends more than $8,000 per year for two hours a week of behaviour therapy for her son, diagnosed with level 3 autism. It's a number she says is low compared to other parents she knows paying between $25,000 and $80,000 per year and taking second mortgages on their homes to cover costs.
Parents are fed up
Finances are often a barrier for parents, said Chris Magowan who runs All and Every, a business offering academic and community supports for people with autism in London. He's seen parents fed up and decide to pay out of pocket for programs.
"The time to act is now, not when the waitlist number is called," he said.
"They're missing out a lot of services that might be available to them, and certainly, they're missing out on finances that they can use to support these interventions and supports for their kids."
The province doubled its investment in OAP to $600 million annually
To address the waitlist, the ministry of children, community and social services committed to providing 8,000 children with funding for core clinical services by fall 2022. Core clinical services include applied behavioural analysis, speech-language pathology, occupational therapy, among others.
The enrolment target was reached by mid-December of last year, said ministry spokesperson Kristen Tedesco in an email to CBC News. Registration, however, doesn't ensure families are already receiving funding for services yet.
"Outside core clinical services, families registered in the Ontario Autism Program may access other supports," wrote Tedesco. More than 40,000 children and youth with autism have received support through multiple streams of OAP.
The province doubled its investment in the OAP to $600 million annually in March 2021.
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