Advocates, families of children with autism angered by income level to qualify for maximum funding

TORONTO – Advocates and families of children with autism angered by a revamped government program that reduces funding for therapy say new information about who can qualify for that money sets a “ridiculous bar.”

The new autism program gives families up to $140,000 to pay for treatment – a maximum available only to the lowest income families whose child is in treatment from ages two to 18. The funding is also subject to annual caps of $20,000 a year until a child turns six, and $5,000 a year after that to age 18.

The government confirmed Tuesday that only families with an adjusted annual net family income of under $55,000 will be eligible for those full amounts, with funding determined on a sliding scale up to a maximum of a $250,000 income.

But families say intensive therapy can cost up to $80,000 per year.

Michelle Costa has been paying out of pocket for therapy for her five-year-old son, who has been on the waiting list for nearly two years. The amount she will likely qualify for will pay for under two hours of therapy per week, she said.

“We paid privately always assuming that when our name came up on the wait list we would then receive the adequate funding,” Costa said. “It seems really likely that some families will qualify for almost nothing. For a double-income family or even a single-income family, $55,000 is a very low threshold to be able to pay for something that’s actually crucial to your child’s life.”

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New Democrat Rima Berns-McGown raised Gaull’s story in question period Tuesday and Children, Community and Social Services Minister Lisa MacLeod responded that the new plan will allow Gaull’s family to buy such technological aids. Gaull said since she will qualify for less than $5,000 a year, that won’t leave much money from an already small pot to pay for actual therapy.

“Who’s going to teach the children how to use the devices?” she said. “His therapists are teaching him how to communicate on his iPad program. His anxiety level has gone way down because he can tell us what he needs, what he wants.”

MacLeod has said that her goal with the new program is to clear a backlog of 23,000 children waiting for treatment, saying it’s unfair that only about 8,400 are currently receiving funded therapy. She said that the flow of kids coming off the wait list had slowed to a trickle, leading her to believe that if she didn’t make changes, they would stay on that list forever.

But many of those on the list say they’d rather wait for full funding.

The president of the Ontario Autism Coalition called $55,000 “a ridiculous bar,” saying MacLeod is clearing the wait list by giving thousands of families very low levels of support.

“The means the testing component of this program is particularly cruel,” said Laura Kirby-McIntosh. “As parents are starting to take a closer and closer look at the fine print on this plan they’re getting angrier and angrier.”

Parents are planning a protest at the legislature on March 7.

Michael Coteau, who was the minister in charge of the file when the former Liberal government unveiled a revamped program in response to protests in 2016 from families, said Tuesday that he is asking the integrity commissioner to investigate MacLeod warning a group of behaviour analysts of consequences if they didn’t support her new autism program.

“The minister should not be using her position of influence to push organizations, not-for-profit organizations, and stakeholders to support a plan they clearly do not support,” said the Liberal legislator.

MacLeod has apologized after the Ontario Association for Behaviour Analysis said she and her staff told them it would be “four long years” for the organization if they didn’t provide a positive quote to help promote the program.

She said Tuesday that she doesn’t remember making the remark, but she hasn’t denied it, either, and described the meeting in question as “tense.”

“I think probably the tone wasn’t probably the best, so I’ve apologized,” MacLeod said. “I don’t recall what I may or may not have said, so I just wanted to apologize so we can move on.”