Some parents leaving Ontario over frustrations with autism program

Marie Lee and her family stepped off a plane in Calgary on Tuesday, ready to start a new life - but for all of Western Canada's charms, their move had more to do with getting out of Ontario.

Lee had received news that her nearly three-year-old daughter, who has severe autism, would not be able to receive funding from the province's autism program until at least 2027. And the family couldn't afford her care without that help.

So, Lee said, they decided to uproot.

Before they even left Ontario this week, they'd already secured funding from the Alberta government to place their child in a daycare that provides autism-specific services.

“I'm not going to have my daughter suffer because financially we cannot afford to pay all of that money out-of-pocket,” said Lee, who has three other children.

Her daughter, who will turn three in March, was diagnosed with Level 3 autism in 2020, along with epilepsy and sensory processing disorder. The same year, the family joined the Ontario Autism Program wait-list.

It took until February 2020 for Lee to receive an invitation to join the program's online portal, Access OAP, and see what services her daughter might be eligible for. But access to funding would take much longer.

“People have the understanding that once you create your access OAP online account, that means that you are off the wait-list, and you are now going to be receiving funding. However, that is not the case,” said Lee.

When she called the program's office to ask about it, she said they told her the wait would be at least four more years, and a “determination of needs” phone call would not be scheduled until 2027.

There are “a lot of angry parents,” Lee said. “It just makes you incredibly angry. It's causing a lot of parent burnout, because parents are depending on that funding to help their children.”

Data collected by the province's financial accountability office in the 2019-2020 financial year show that about 50,000 kids were on the wait-list for autism services at the time.

In March 2021, the Ontario government announced changes to the autism program, promising to double its annual budget from $300 million to $600 million. But there was a backlash from parents and advocates who said that the government needed to do more to address the limited availability of services and rebuild trust with parents.

Merrilee Fullerton, the minister of children, community and social services, initially said that the government would enroll 8,000 kids into core clinical services such as behavioural therapy by the end of fall 2021 and into 2022.

But the government failed to meet that target. In August, The Canadian Press reported that only 888 children had been registered in core therapies.

A spokesperson for Fullerton said that more than 40,000 children and youth with autism have received support through the streams offered in the program, but did not provide a timeframe for that number. Her office did not respond to questions about the average wait time to receive funding or to what extent enrolment numbers for core therapies have changed since last year.

For Lee, the situation was untenable enough that she spent the past year researching other provinces' programs for children with autism. She settled on Alberta.

Its program, Family Support for Children with Disabilities, offers funding through an online portal where parents can upload documentation about their child's diagnosis, to be reviewed by a disability services worker. The province does not offer direct funding, instead paying directly for any programs the child needs.

The minute Lee signed her lease, she said she began applying to the support programs. The Alberta program assured her she would be able to get funding within 90 days as long as she provided the right documentation, she said. And that's what happened.

Nora Fayed, a registered occupational therapist and associate professor at Queen's University, said that Ontario's inability to provide timely support to parents will come at the cost of children's development.

Support for children between the ages of two and five is vitally important, said Fayed, whose clinical expertise is on feeding and eating. Children with autism often have special considerations regarding how they eat, and may have aversions to certain foods, she said.

“If they don't have the right intervention and support, they ended up eating very few things,” said Fayed.

“There are a lot of young people with autism who grow to only eat one thing and have difficulty with digestive problems, because they don't have any diversity in their diet.”

Her own seven-year-old son was diagnosed with autism in 2021. She said she has been on the Ontario program's wait-list since then, and has received no news of when funding will come.

Fayed said her son has recently been dealing with more-severe mental-health issues.

“Because he's been in crisis repeatedly, I called the program to say, 'We're in an emergency now. How does this change things?”' she said.

The program told her that her son was now eligible for urgent care. But it didn't offer any new support as a result, Fayed said.

“It doesn't change anything.”

Because of her son's needs, Fayed said she has been unable to work full-time. She took the month of January off work to sit with him in school.

Like Lee, Fayed has had to consider upending her life to make sure that her son is taken care of. In the absence of support, she said she is thinking about moving her son to a private school or moving their family to a less-expensive home.

“I cannot keep up with taking care of him and keeping my job when I have no services.”

This report by The Canadian Press was first published Feb. 22, 2023.