That’s how Lindsay Cote describes trying to navigate Ontario’s system for children with autism.
She received a $20,000 cheque from the government about three weeks ago to spend on treatment for her five-year-old son, Jack.
He and his younger brother, Alex, were both diagnosed with autism at age two. Jack started speaking when he was three after doing speech therapy and was taken off the province’s waiting list for applied behaviour analysis (ABA) because he was doing so well.
Alex desperately needs the funding.Lindsay Cote
Alex, who at age four can’t talk and still wears diapers, has received nothing.
“Alex desperately needs the funding. He starts school this year and I am worried about how he will do,” Cote told HuffPost Canada through Facebook Messenger.
“Not only he doesn’t speak. He does not even point … He doesn’t listen. Not because he doesn’t want to, he just doesn’t understand,” she said.
Cote said letters started going out to families in April that said they could apply for “childhood budgets” — a new funding program announced by the Progressive Conservatives in February. She received a letter allowing her to apply for funding for Jack, who wasn’t on the therapy waiting list. She did not receive a letter for Alex, who is on the waiting list.
“They claim they were sending them out on a needs basis. Obviously that is false.”
Cote said she has called the number listed on the application to ask why she’s getting money for one son but not the other.
“It’s almost impossible to get anyone on the phone to ask questions and they don’t have answers when you do,” she said. “I literally have given up.”
The only thing the government will say about Alex is that the wait for the initial letter — that just lets a parent apply for funding — could take up to 18 months to arrive.
“This whole thing confuses me.”
Government has already backed off its plan
Ontario’s Progressive Conservative government has already said it won’t move forward with the highly criticized plan announced in February. Minister Todd Smith said Monday the government is working on a new plan for April 2020, which will provide services based on a child’s needs.
But that February plan is still being rolled out in the meantime, which one behaviour analyst says is unacceptable.
“For the children that are on the waitlist, my heart breaks for them,” said Nancy Marchese, a psychologist and board-certified behaviour analyst who supervises programs at Breakthrough Autism in Richmond Hill.
“I don’t think the interim plan is fair to those kids at all.”
She said there are families — “the ones who can” — that are liquidating their retirement and education savings or moving in with grandparents in order to afford therapy while they wait to see what the government does next.
“It’s heartbreaking … It’s so wrong,” she said.
“They’re going to wait now until the spring to find out what’s next for them when there are solutions on the table already. To me, it’s completely unnecessary. They could come up with a stronger interim plan.”
Smith also announced Monday that families who were receiving services under the previous Liberal government’s plan would get a six-month extension for the second time.
Marchese says the back-and-forth has caused stress and chaos. Some parents were preparing to send their kids to school for the first time this September because they thought their full-time therapy funding would be gone. Now, about six weeks before the school year starts, they’ve learned they won’t have to — at least for another six months.
“It’s incredibly difficult for families to have to go on this rollercoaster ride,” Marchese said.
Minister reiterates that new plan will be needs-based
A spokeswoman for the minister said the PCs are committed to providing a needs-based program for kids with autism.
“This clear new direction stems from expert advice that we’ve received from service providers and the lived experiences shared by families of children with autism,” Christine Wood told HuffPost in an email.
“The new program will be announced this fall, and implemented by April 2020. In the meantime, the Ontario Autism Panel is working to provide their recommendations and advice, while our government ensures no gaps in funding for those currently in service. We are also continuing to bring children and youth into service by providing childhood budgets.”
Cote says the childhood budget she received will pay for summer camps for Jack, who struggles when school is out and needs routine.
“Don’t get me wrong, it will be put to good use,” she said of the $20,000. “But along with Alex, there are many others that need it as soon as possible.”
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