Autism Ontario: Rural parents say support services difficult to access

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 behavioral therapy through the Children’s Hospital of Eastern Ontario, which has been treating him since 2014.

But hospitals no longer offer in-home or virtual care, and Bibels, who lives about an hour’s drive south of Ottawa, says it’s a reality to go to the city for appointments at least twice a week. said it was not relevant.

“I’m old and have some medical issues,” Bibels said.

She and her son are currently on a waiting list for mobile services, which may not be available by summer.

“When you’re a teenager, life becomes more social and schooly and everything becomes more important. He’s really struggling in those areas right now.”

Janet McLaughlin, 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 children. I got

“It’s not practical to access these services every day. Many autism services are different than other healthcare where you go once a week or once a month. It works best every day,” said McLaughlin, co-founder of the Laurier Autism Research Consortium.

McLaughlin’s son was diagnosed with autism in 2012. She said it was important for her child’s development to get support early in her life and that waiting lists were an issue.

Clinicians in the Ottawa area see a growing need for out-of-town services, but limited staff and high costs are making demand difficult to meet.

Matt Derkach, clinical director and board-certified behavior analyst at Horizons Behavior Consulting, says new families need to be put on the waiting list.

Under a recent change, states are funding autism services for families rather than funding service providers directly. or at your own expense.

“There are things we can do in rural areas, but we don’t have the luxury, so we try to avoid more than an hour,” says Derkach.

McLaughlin said the upheaval caused by program changes in recent years has been exhausting for the family.

In March 2021, the Ontario government pledged to double the annual budget for autism programs to $600 million. However, there has been pushback from parents and supporters who say the government needs to do more to address the limited availability of services.

A 2020 report from the state’s Office of Financial Accountability raised concerns about a shortage of available clinicians as the need for services grows.

Minister for Children, Community and Social Services Marylee Fullerton initially said the government would enroll 8,000 children in core clinical services such as behavioral therapy between late fall 2021 and 2022.

The Canadian Press reported in August that only 888 children were enrolled in core treatment at that time.

A spokesperson for Fullerton’s office said Monday that the goal of enrolling 8,000 children into core clinical services was reached in December. However, some families say that registration does not mean they are receiving support.

Last week, The Canadian Press reported that Marie Lee and her family moved to Alberta after having to wait four years for their daughter to be able to access key services in Ontario. rice field.

Lee’s family is enrolled in the Ontario Autism Program and was able to access it online, but Lee’s 2-year-old can only participate in the program after undergoing a needs assessment. Lee was told it wouldn’t happen until 2027 at the earliest.

State Legislative NDP member Monique Taylor asked Fullerton about Lee’s story during the Feb. 22 questioning period.

In her response, Fullerton called the Ontario Autism Program “world-leading” and claimed it “meets our benchmarks.” I have not answered.

Byvelds has decided that if his son’s condition worsens, he will have to drive to Ottawa several times a week, but he hopes he will be able to receive care at home.

This report by the Canadian Press was first published on February 27, 2023.

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