Lori Byvelds has been advocating for her 13-year-old son since he was diagnosed with autism almost a decade ago.
Through the Ontario Autism Program, the family now has funding for his behavioural therapy through the Children’s Hospital of Eastern Ontario, which has provided his treatment since 2014.
But the hospital is no longer providing at-home or virtual therapy, and Byvelds, who lives about an hour’s drive south of Ottawa, said getting to the city for at least two appointments a week is not feasible.
“I’m getting older and have some medical problems,” Byvelds said. “For me, it’s just exhausting. It’s exhausting for him.”
She and her son are now on a wait list for mobile services, which may not be available to them before the summer, and in the meantime Byvelds worries he will suffer.
“When you get to be a teenager, life is more social and school and everything is more important. He’s really struggling in those areas at the moment.”
Janet McLaughlin, an associate professor of health studies at Wilfrid Laurier University, said people in rural communities are likely to have more challenges accessing local services for their kids.
“It’s not practical to be accessing those services daily, and for many autism services — it’s not like other health care where you might go once a week or once a month — for many of them, they’re most effective if you do them daily,” said McLaughlin, co-founder of the Laurier Autism Research Consortium.
McLaughlin’s son was diagnosed with autism in 2012, and she said getting support at a young age is critical for children’s development, making wait lists a problem.
Clinicians in the Ottawa area say they’re seeing an increased need for their services outside the city, but limited staff and high costs are making it difficult to meet the demand.
Matt Derkach, clinical director at Horizons Behaviour Consulting and a board certified behaviour analyst, said he has to put new families on a wait list.
Under the recent changes, the province gives funding for autism services to families rather than funding service providers directly. Derkach said that means passing on the high cost of travel to clients, or taking on the cost themselves.
“We can do some rural areas, but we try to avoid anything more than an hour because we just can’t afford it,” said Derkach.
McLaughlin said the upheaval caused by changing programs in recent years has been exhausting for families.
In March 2021, the Ontario government promised to double the annual budget for the autism program to $600 million. But there was a backlash from parents and advocates who said the government needed to do more to address the limited availability of services.
A 2020 report from the province’s Financial Accountability Office raised concerns about the lack of clinicians available as the need for services grows.
Merrilee Fullerton, minister of Children, Community and Social Services, initially said the government would enrol 8,000 kids into core clinical services such as behavioural therapy by the end of fall 2021 and into 2022.
The Canadian Press reported in August that only 888 children had been registered in core therapies at the time.
A spokesperson from Fullerton’s office said on Monday the target of enrolling 8,000 children into core clinical services was reached in December. However, some families say that enrolment does not mean they’re getting help.
Last week, The Canadian Press reported that Marie Lee and her family moved to Alberta because they were facing a four-year wait for their daughter to get access to core services in Ontario.
Lee’s family was enrolled in the Ontario Autism Program and had online access, but her two-year-old can only get into a program after she receives a needs assessment. Lee was told that wouldn’t happen until 2027 at the earliest.
Monique Taylor, an NDP member of the provincial legislature, asked Fullerton about Lee’s story in question period on Feb. 22.
In her response, Fullerton called the Ontario Autism Program “world-leading” and insisted it is “meeting our benchmarks.” Her office has not responded to followup questions regarding those comments.
As for Byvelds, she has decided that if her son’s condition worsens she will have no choice but to make the long drive into Ottawa several times a week, but she is hopeful she will be able to find at-home care.
This report by The Canadian Press was first published Feb. 27, 2023.
This story was produced with the financial assistance of the Meta and Canadian Press News Fellowship.
Cindy Tran, The Canadian Press