Waterloo region protesters take fight against autism funding changes to Queen's Park

People from across Ontario are headed to Queen's Park Thursday to protest changes to the Ontario Autism Program.

Two buses of families and supporters from Waterloo region are joining the rally and for some on board, it may feel like déjà vu.

They faced a similar fight nearly three years ago, when the former Liberal government revamped the program, cutting off intensive therapy for thousands of children across the province.

Prior to 2016, there were two streams of funding for children with autism. The first stream allowed children to access a short block of therapy, known as applied behavioural analysis.

The second stream provided funding for weekly intensive therapy, called intensive behavioural intervention.

Dr. Janet McLaughlin, an autism advocate and researcher at Wilfrid Laurier University, says although there are many forms of treatment for autism, IBI has the most scientific evidence behind it.

When the former Liberal government initially announced changes to the program in 2016, it said it would blend the two streams into a single service, tailored to the child's individual needs. 

That program wouldn't roll out until 2018, but in the meantime, the Liberal government decided to eliminate IBI for children aged five and up in an effort to reduce wait times.

Suddenly, more than two thousand children — including McLaughlin's son Sebastian — were ineligible for intensive therapy.

Families were outraged. The move prompted protests across the province and spawned the #AutismDoesntEndAt5 campaign, supported by both the Progessive Conservatives and NDP.

The public outcry spurred the Liberals to backtrack, and in 2017 it introduced a new program.

"That program allowed any child with autism to receive the level of therapy that their clinician determined to be necessary," McLaughlin said.

"Families on the whole were thrilled because once they got into the program, they knew that their child would always be able to get the amount of therapy that they needed and it wouldn't be arbitrarily cut off by a birthday," she said. 

The new program wasn't without its flaws, though, with wait times of 18 to 24 months in some cases for children who weren't already in the program.

When the Progressive Conservative government began looking into the program shortly after it was elected, McLaughlin was hopeful there would be positive change.

But when Minister of Children, Community and Social Services Lisa MacLeod unveiled the changes in early February, McLaughlin says families were given a "pittance" instead.

Under the new Ontario Autism Program, which is set to take effect in April, funding will be based on age and household income. Children under the age of six will be eligible for up to $20,000 for autism therapies, while older children will receive a maximum of $5,000.

"Basically every child with autism, regardless of the severity level and regardless of the need, would be given the same small amount of money, and even that would be reduced by income," McLaughlin said, noting that the sliding scale for income begins at $55,000 per household.

McLaughlin is part of the group from Waterloo region that is headed to Toronto on Thursday and while the circumstances may be different, she says they're protesting for the same reasons they did in 2016.

"Our demand is quite simple: our children with autism should get the level of therapy that their clinician deems necessary for them. No more, no less," she said.

Government continuing to hear from parents, MPP says

Kitchener South-Hespeler MPP Amy Fee said in a statement to CBC News that her government is continuing to hear from families "with a diversity of comments and opinions."

Fee is the parliamentary assistant to the Minister of Children, Community and Social Services. She also has two children with autism.

"We recognize that these are parents who are advocating on behalf of their children," Fee said about the protesters gathering Thursday. "Our government firmly believes in everyone's right to express themselves peacefully."

In a previous interview with CBC News, Fee said her government plans to stick with the new program for the next four years.