Feb 22, 2023, CBC: Some parents are leaving Ontario because of frustrations with its autism program https://www.cbc.ca/news/canada/toronto/ontario-autism-families-leaving-1.6756013
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….
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." Province fails to meet enrollment target
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 [$220M] to $600 million [$440M].
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.
Family secured support within 90 days in Alberta…
Last year, the Ontario government stopped providing public updates on its progress toward enrolling more children in core autism therapies.
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….
'It doesn't change anything'
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….