Ontario PCs Should Expect Protests Over Autism Program: Mom

A Mississauga, Ont., mother who has a six-year-old with autism says she feels “cheated” by Ontario’s politicians.

“I wasn’t expecting millions of dollars,” Jennifer Toth told HuffPost Canada, “but I wasn’t expecting $5,000 a year, either.”

She and her husband spend up to $12,000 a year on therapy for their son, Nicholas. That covers four hours a week of applied behaviour analysis, but Toth said Nicholas needs more than that. They’ve been paying out of pocket while his name sits on a waiting list for government-funded services.

The Progressive Conservative government vowed on Wednesday to tackle the list by distributing money directly to parents of children with autism instead of through service providers. That decision means, though, Toth will get a maximum of $5,000 a year toward the treatment Nicholas needs.

Watch Minister Lisa MacLeod’s announcement:

“For us, nothing changes. We’re still going to struggle,” she said. “We’re still going to keep him in therapy, because that’s what he needs and that’s where he’s learning to survive in the world.”

Under the PCs’ new model, families of young children are eligible for a maximum of $20,000 a year up to a lifetime total of $140,000. Parents of older children will get less funding for their therapy, and there will be no support for people with autism who are over the age of 18.

Some advocates panned the program in the media and on Twitter, arguing that kids who need the most help are getting shortchanged. Intensive therapy can cost as much as $80,000 a year.

Even for Toth, whose son is high functioning, the cost of therapy has become a burden. She said the family falls behind on its bills and relies on help from her mother-in-law because of the cost of Nicholas’ treatment.

But it’s worth it.

“Nicholas is a different kid than he was two years ago.”

Before, Toth had trouble even taking Nicholas to the mall. He would get overwhelmed if the music was too loud or if somebody bumped into him. It used to take him two hours to calm down when he was upset, but now he can do it in 10 minutes. A few years ago, Nicholas was going to school for only half-days, but now he can stay and be with other kids the whole day.

And for the first time, Nicholas has friends.

“That’s a big thing,” Toth said.

She agrees that the government had to do something about the waiting list, but wishes it would give out funding based on children’s needs. Her family spent a year on a waiting list just to have Nicholas diagnosed, before giving up and having him diagnosed by a private psychologist.

“I haven’t had any help from the government,” Toth said.

Government defends its changes

Minister Lisa MacLeod and other PC MPPs defended their program on Wednesday. Premier Doug Ford’s office sent out a press release boasting about the support the government has received for the move.

Jeremy Roberts, a PC MPP who who has devoted much of his career to fighting for autism services, told HuffPost that the changes are a “positive first step.”

When asked if he would push his government to provide more funding, he said he would keep listening to parents and their concerns.

The co-founders of Connecting Dots Behavioural Services, the centre where Toth’s son Nicholas gets his treatment, said it has been a hard couple of days for all the parents they work with.

“Even the families like Jenn’s, who have been on a waitlist, this should be really great news for these families,” Lina Pezzo said. But no one has walked in and said they were relieved.

She and business partner Sarah Elkami Trdina said the PCs can expect to see protests at Queen’s Park. In 2016, the former Liberal government backtracked on its own controversial changes to the autism program after parents demonstrated.

If there’s a protest, Toth said, she’ll be there.

“I’ve never fought for anything in my life, but this is one thing, I feel like it hits my heart. I need to fight for these kids.”

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