Hundreds of families and advocates protest autism program changes

TORONTO -- Hundreds of families and advocates of children with autism protested at the Ontario legislature Thursday to plead with the government to reverse changes they say will leave kids without the therapy they need.

Children, Community and Social Services Minister Lisa MacLeod announced last month that in order to clear a waiting list of 23,000 children, kids with autism would receive direct funding to pay for treatment.

Families will get up to $20,000 per year for treatment for children under six and $5,000 a year for children six to 18, but intensive therapy can cost up to $80,000 a year.

Parents are calling for the funding to be based on children's individual needs, instead of just their age.

Kristen Visser came from Kitchener, Ont., with her six-year-old daughter who is in government-funded therapy part-time. That therapy has allowed her to feed herself, communicate and say, "I love you," Visser said. But that therapy costs about $60,000 per year, and under the new program she will qualify for less than $5,000.

"Obviously the (Ontario Autism Program) that they want to put in place is not right or all of these people, thousands and thousands and thousands of people and families, would not be protesting all over Ontario," Visser said.

"There's obviously something wrong here and they need to go back to the table and they need to figure this stuff out."

Tina Walker has two children on the autism spectrum -- one on the wait list and one in full-time therapy -- and said the program changes are "absolutely devastating."

"It feels like we're up against a party who doesn't care about our children, who seems to be wrapped up in just having their own way," Walker said. "(They're saying,) 'We made this decision and we just don't want to back down from this decision no matter the consequences."'

With no funding for full-time therapy, her daughter will go into a school system that is unprepared, Walker said.

"She is non-verbal, she's not toilet trained, she is a flight risk and she doesn't know about danger, so she doesn't know that if she runs into the street she could be hurt," Walker said.

Parents, advocates and some within the school system say if children with autism who are currently in intensive therapy no longer have those costs fully covered, they will be in classrooms before they've had the chance to develop necessary skills.

That also means already-stretched educational assistant resources will be spread even thinner.

The education minister's office has said she is reviewing the results of an autism pilot project in schools, but the results won't be available until weeks after the autism funding changes have kicked in on April 1.

Five education worker unions released a joint statement Thursday condemning the changes to autism funding.

"We strongly urge the government to rethink its rash decision-making on the Ontario Autism Program and put the needs of children with autism first," they wrote. "These changes are a devastating blow to thousands of families and will undermine the inclusion of children with autism in the public education system."

Three associations representing principals at Ontario's English, Catholic and French boards also raised concerns about the program this week, as did two regional autism service providers.

"During consultation meetings with the ministry, Surrey Place provided alternative models for service delivery that focused on evidence based clinical treatment required to meet the individualized needs of children living with autism," Surrey Place said in a statement. "Our recommendations are not reflected in the new model."

Ontario Autism Coalition president Laura Kirby-McIntosh said she has confidence that MacLeod and Premier Doug Ford will "see the light."

"I believe that in politics it's an honourable thing to say, 'You know what, we kind of goofed. We need to start over,"' she said. "So I'm calling on the premier today: press pause, call stakeholders back to the table, it's not too late to fix this."

MacLeod has indicated she will not be making changes to the program. But Kirby-McIntosh said families are not backing down, either.

"She may think she's stubborn, but have you met these people?" she said.