Ontario's autism overhaul wasn't about the children: Youth advocate

Ontario’s autism overhaul wasn’t about the children: Youth advocate

The excerpt from the report, We Have Something to Say, is about a family that nearly lost their house trying to pay for autism therapy. Click to expand.

The excerpt from the report, We Have Something to Say, is about a family that nearly lost their house trying to pay for autism therapy. Click to expand.

The provincial government's overhaul of its autism program is a "mug's game" — a futile one that no one wins — according to Ontario's watchdog for children and youth.

In an emotional interview with QP Briefing TuesdayIrwin Elman said Ontario's therapy wait-list system for autistic children was broken long before the controversy erupted this spring.

Simply heeding calls from desperate parents and the opposition to reverse the government's unpopular decision to cut children from the intensive therapy wait list is not enough to fix it either, said Elman, the province's independent advocate for children and youth.

Over the past two years, Elman has been gathering stories and input from Ontario children with special needs and their caregivers. On Tuesday, he released a report about the findings entitled We Have Something to Say. The controversy over the decision to take children aged five and over off the wait list for Intensive Behavioural Intervention (IBI) therapy erupted this spring, near the end of that process.

But before that decision, families were languishing on the list for IBI therapy for two to four years, the advocate said.

Studies of the province's system found that IBI therapy is most effective, or only effective, for young children with autism. Because of the long wait list, Ontario children have been going without IBI therapy for the key years, before the age of five, then eventually getting therapy when it's less effective. Meanwhile, younger children, who could benefit more from it, waited. The government removed children over the age of five from the wait list on May 1 to make way for those younger children.

The stopgap solution to the wait-list ejections — parents are handed $8,000 for private therapy when their child is kicked off the IBI therapy list — isn't necessarily worse, overall, than leaving them languishing, said Elman.

“It’s a mug’s game," he said. "Maybe it’s better to get $8,000 than have nothing, but don’t pretend it’s a solution to anything. Don’t pretend this is about the child and providing them with what they need. It isn’t."

The reaction to the Liberal government's move has been significant. There are an estimated 40,000 children in Ontario with autism. Many parents have organized to protest the wait-list cuts, rallying in front of the legislature and through social media, including with the Twitter hashtag #AutismDoesntEndAt5. Inside the legislature, the opposition parties have hammered the government with questions about the autism on a daily basis for weeks. The debate became so heated last week that NDP MPP Monique Taylor got herself ejected from the legislature.

According to the government, the $8,000 is meant to be a temporary fix until a new Ontario Autism Program is rolled out in two years, and as it spends an additional $333 million over the next five years. Elman said the problem with that is that no one has been told what that new program is going to look like, or about its quality.

Families who can pay for autism treatment on their own have long paid for private therapy — but intensive therapy costs much more than $8,000.

The We Have Something to Say report includes a story from a family that sold all of their assets and nearly lost their home trying to pay for autism therapy for their son in his key younger years while he was on wait list for government funding. (See image.)

“When you think about that family, think about how there are many families that have no home, and a loan, that’s not just an option,” said Elman.

The advocate said he was encouraged to hear that Children and Youth Minister Tracy MacCharles is open to suggestions on what the new Ontario Autism Program will entail, but Elman has already raised some concerns from what he's heard from the government. That includes a lack of co-ordination between ministries on the new program.

"If it really was child-focused — about getting these children what they need and these parents the help that they need — then you would be looking at the school system," Elman said. "Where is the partnership between the Ministry of Education and the ministry of child and family services to provide those children what they need? It’s non-existent. When I brought it up to the ministry they said, ‘Well, the school system is the next frontier, maybe we’ll get to it.'"

Elman said he understands parents of autistic children who want to see their kids back on the IBI therapy wait list, even if it's not a solution to the problem.

“Putting people back on a wait list doesn’t do much good, but I think, what parents are feeling is that there’s no hope," he said.

Elman said the IBI therapy wait list feels like "hope" to parents that when their children finally receive intensive therapy, they'll reach their full potential. That hope has been taken away by the government's decision to cut older children off the wait list — and that's what sparked parents' anger.

"I have children with special needs and I go home and look at my children when they’re sleeping at night. There's a feeling you get — you feel this love and protection," he said. "Those parents now go in the rooms of their children every night and look at their children, and they have the hope taken away from them that that wait list seemed to provide, and have nothing to replace it — because $8,000 doesn’t replace it."

"What do you expect those parents to do? We should thank them for being so fierce and supporting their children."

One solution to the rancour that has developed between parents and the government would be to hear from autistic children and design supports around with them in mind. That's the approach he's taken with the We Have Something to Say report.

"Young people have spoken up to say, ‘We don’t actually want you fighting over us, we just want you to provide us what we need,’” he said.

The major thrust of the the report is to get children the assistance they need, when they need it, he said. That applies to all wait lists in the system — so children who need a psychologist to diagnose a learning disability and children who need to see an occupational therapist, for example, don't have to wait.

"It’s the bar young people are holding up for our province," Elman said. "No more wait lists. When we need something, we get what we need. That is the process, the mountain that the young people are trying to move.”

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To contact the reporter on this story:

QP Briefing Staff

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