Parents fear new funding model means less support for children with autism

Parents of children with autism feel pushed aside by the Ontario government, they said at a rally in Kitchener on Friday.

Families, therapists and other supporters gathered outside Progressive Conservative MPP Amy Fee's constituency office to protest planned changes to the Ontario Autism Program.

Under the new program that takes effect April 1, families with autistic children under the age of six will receive up to $20,000 a year for support, while children over the age of six will be eligible for $5,000 until they turn 18.

The goal is to help clear the long wait list of children with autism waiting for support, Fee said.

Fee is the parliamentary assistant to the Minister of Children, Community and Social Services, which oversees the autism program.

"As a parent of children with autism myself, I think every day is kind of scary...trying to know 'where do I turn' and 'what do I do with my child,'" Fee said.

"That's really why we really wanted to make sure we were looking for a program that we could help – even if it's just a little bit – every child in Ontario."

But parents at the protest told CBC News they are worried they will lose the support they currently have.

Amanda Hermanus

When she first learned about upcoming changes to the autism program, Amanda Hermanus said it felt like "a kick in the gut."

Hermanus has two children with autism. Her son Nick recently graduated high school, and she says the school has been extremely supportive as he tries to make the transition to post-secondary education or the workforce.

But Hermanus worries her younger son, Justin, won't be as lucky. Justin is 14 and will be starting high school soon.

"We worry now, when it's time for him, whether or not the same supports are going to be available to him, and Justin actually has a little bit more needs on the spectrum than Nick does," she said.

Hermanus said Justin was non-verbal when he was first diagnosed, and programs like speech therapy and occupational therapy have made a big difference in his life.

"He's actually a very good student. He's got a great sense of humour. He's got some social things that go on, but you know he's done very well thanks to the support that we've had in place for the last 14 years." 

Angie Taylor

Angie Taylor went to the rally to show support for her son, who has been on a waitlist to receive therapy for almost six years.

"He goes to a private school – the Oakridge Academy – and I could not be any more pleased with what's going on, how they are working with him," Taylor said.

"I have noticed and witnessed a whole new child for him and without those services [he] goes back to a public school, where they don't have enough funding or proper educational teachers for him. What's he supposed to do?"

Taylor worries there won't be enough funding for children like her son and said the government's push to eliminate the waitlist isn't the answer.

Nina Pereira

Nina Pereira's son was three-and-a-half years old when he was diagnosed with autism.

"We started paying privately for therapy. We paid for two years and then he came off the waitlist and he has been in funding ever since," Pereira said.

Her son is now ten and she is concerned he may lose that funding. But Pereira said she is also worried about other families who are just starting their journeys with autism.

"Therapy costs anywhere from $70,000 to $150,000 depending on the child and $20,000 isn't going to cut it. And that's only for children under the age of six," she said.

"I'm pretty sure that any family here would say that they would rather wait five years on a waitlist, than get what they're getting now."

Pereira said children need services based on their needs and not on their age.