Failed marriages, second and third mortgages, mounting debt, and suicide attempts both failed and successful — those are some of the symptoms of a broken system of autism support that were shared Wednesday evening with Simcoe North MPP Jill Dunlop.
And, they only represent the effects on parents and caregivers, never mind the children with autism.
Dunlop hosted a roundtable discussion at the Orillia Common Roof, where she was gathering feedback to take back to her Progressive Conservative government at Queen’s Park.
There were plenty of tears as the 19 people in attendance shared heartbreaking stories about kids who have been waiting for years to access therapy and other services; the toll it takes on parents emerged as the discussion went on.
“I had to bury a father who committed suicide because he couldn’t handle the pressure. I don’t want to have to do that again,” Martin Giebel, a minister at a Midland church, told Dunlop.
Not long after, a mother of a child with autism admitted she tried to kill herself recently after her husband left, leaving her to be the primary caregiver for her child.
Wednesday’s discussion was part of the province’s plans to revisit its changes to the Ontario Autism Program. The government has said it will move to a needs-based program rather than provide funding based on a child’s age. It has formed an autism advisory panel to help with that process.
Whatever the outcome, it was made clear by those in attendance Wednesday that the funding previously proposed by the province is not sufficient.
Families with kids younger than six would have been eligible for $20,000 per year, with the lifetime maximum being $140,000. That amount would drop to $5,000 per year when the child turns six. Therapy such as applied behavioural analysis (ABA) can cost more than $50,000 per year.
“When you offer me $5,000 for two boys … I don’t know what to do with that. It’s like you’re throwing me change,” said a mother of twin boys, both of whom have autism.
Sally Potts, who used to be the Simcoe County District School Board’s principal of special education, told Dunlop the province’s changes to autism funding, as well as its elimination of the child advocate office and funding cuts to the Children’s Aid Society, amount to “a direct attack on children.”
“It’s hard not to see that as an attack on our children … yet you’re willing to break a billion-dollar contract for beer,” Potts said.
Dunlop told Potts the point of the meeting was not to have the MPP defend the various decisions made by the government. That didn’t stop Potts from revisiting the subject later in the meeting.
“It is the wrong priority,” she said, “and you need to take that back to (Premier) Doug Ford.”
Funding was one of the main topics of discussion. Many believe it is inadequate and they would like to see the province invest the needed amount of money now, which would save money in the long run.
“The proposed changes are going to take a little bit of money and do nothing for kids,” said Kerrie Lalonde, a speech-language pathologist.
“It’s great to get kids off the wait list, but what then?” she added, referring to the changes as “an ethical travesty.”
The challenges among those with autism don’t apply only to the families, explained Julie McCrackin, a special-education teacher and a mother of a child with autism.
“I don’t even have the training to support my own kid,” she said. “I need ABA support. Every school needs an ABA support worker.”
The province’s decision to increase the average class size from 22 to 28 students doesn’t help, she added, noting students with special needs, such as autism, will be even more alienated.
“That does not work for kids with autism,” she said.
The PCs said they would provide training for teachers to help them support students with autism, but that isn’t enough for some.
“What can you learn as a teacher in two months, online?” one teacher asked, rhetorically.
Near the end of the discussion, Giebel asked Dunlop what she was going to do to address the concerns she heard that night.
The MPP said she would present the feedback to the government as being representative of how her constituents feel about the changes.
“I have no idea what being in your shoes is like. A few months ago, I didn’t know anything about autism,” she said. “I appreciate you taking the time tonight.”
After the meeting, Dunlop told OrilliaMatters the flaws in the system became clear when she spoke with residents of Simcoe North.
“The outcry was for us to look at a needs-based approach as opposed to a family budget,” she said, acknowledging this area is “lacking in services.”
“I just didn’t realize to what extent,” she said.
