Parents are protesting at Queen’s Park. They’re angry — furious, even — over just-announced changes to autism-therapy funding. Hundreds of parents have gathered in Toronto, and tearful citizens are heckling the government from the viewing areas above the legislature. A cabinet minister is left visibly upset by the protests; members of the government are being forced to apologize for insensitive comments. The government eventually backs down and scraps the most contentious parts of its proposed changes.
You could be forgiven for thinking that I’m describing a recent demonstration against the Progressive Conservative government’s autism policies. But I’m not. I’m summarizing the news in Ontario from almost exactly three years ago, in the early spring of 2016. That’s when Kathleen Wynne’s Liberals were on the defensive over the exact same issues that currently plague Doug Ford’s Tories.
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In the first two parts of this series, we looked at what autism is, how it’s treated, and why that treatment is so expensive. In severe cases, families must essentially hire a therapist full-time to work with their child, which can cost as much as $80,000 a year. Most families simply can’t afford that, and most Ontarians don’t have the private health insurance to cover it. In our single-payer health-care system, government is the last — and often only — line of defence.
By 2016, when the Liberals announced changes to the province’s autism program, government funding for treatment was already spread thin: more children were being diagnosed with the disorder, and they were being diagnosed younger. Wait-lists were long and growing — two years in much of Ontario, and up to four years in some areas. The government’s plan, announced that March, was to increase the budget by an additional $333 million over five years. But it also imposed a limit on when families could receive the most intensive level of treatment: kids five and older would no longer qualify. The idea was that, by dramatically curtailing the number of children eligible for treatment, the government could significantly reduce wait times.
There was a brutal logic to this. In 2016, TVO.org reported that, according to government studies, the most intensive — and most expensive — form of autism therapy, Intensive Behavioural Intervention (IBI), provided rapidly diminishing returns for kids over the age of five. After that age, the government proposed, funding would still be provided, but only for Applied Behavioural Intervention (ABA), a much less intense and less expensive commitment. IBI and ABA are similar in structure and aim, but IBI is full-time and lasts for years. ABA runs perhaps a few hours a week and focuses on a given task or behaviour for a period of weeks or months.
This cold, rational analysis might have made good fiscal sense, but it was a political disaster for the Liberals. Thirty-five hundred children over the age of five, children who had been on wait-lists for years, no longer qualified for IBI. The government offered a one-time $8,000 payout to the families of those children, intended to help them purchase private treatment — but, as we learned in Part 2 of this series, for many families, $8,000 was a drop in the bucket. And families that had spent years waiting for personal, one-on-one therapy were not mollified by the government’s offer to spend more on in-class resources in the school system.
After several months of intense criticism and a change in the minister responsible for the file, the Wynne government backed down. Michael Coteau, the newly minted minister of children and youth services, announced that the age limit would be eliminated and that Ontario would provide $1,000 per week to each child with autism for private therapy for as long as that child was on a wait-list for provincially funded care. It was a massive victory for the parents and a costly reversal for the government. The revised program required a further $200 million.
The cost of the program was something that Lisa MacLeod, Ontario’s current minister of children, community and social services, identified as an urgent problem when she took over the file following last year’s election.
“The program was bankrupt,” she told TVO.org on Tuesday. The demand for services had completely outstripped the government’s expectations. Thousands of children were receiving therapy through provincially operated facilities, but the wait-list was growing — the Tories have said it was up to 23,000 (although this figure has been the source of some controversy). “Some children were going to age out of the program before we could get them any benefits,” she said. The fiscal pressure and massive wait-list were, in her view, serious threats to the program’s viability.
What the government proposed in February of this year was, in effect, to reduce the wait-list for care by providing funds directly to families, who could then seek their own care. But it placed limits on the amount of funding a child could receive in a year, and cumulatively, until they aged out of the system at 18 years old. The funds were front-loaded in the first years of a child’s life and capped at a maximum of $5,000 a year for children older than five. There would be a means-testing component, whereby families with greater financial resources would receive less funding. The province also proposed to accelerate diagnoses, in order to make sure that children wouldn’t be denied help because their condition had not yet been confirmed. The annual maximum for children five and under was set at $20,000 — a small fraction of what many families are already spending.
The public reaction was volcanic — exactly as it was when the Liberals made their proposal in 2016. It was déjà vu all over again.
I asked MacLeod whether she was surprised by the anger. “This is my fifth term in the assembly,” she said, citing her long involvement with issues concerning children and mental health. “My eyes were open,” she added, noting that she’d expected families to react passionately to changes that might affect their children. But the scale of the anger was still well beyond what she’d imagined. “The threats against my life were shocking,” she said. “I now go to public events with multiple police officers.”
Last month, the Ford government announced that it would double the amount of money available and revisit some of the income-based funding restrictions (the means-testing component had produced some perverse incentives: some parents concluded, for instance, that they’d qualify for more money if they were to divorce and apply as single parents). The government has added additional treatments, including occupational and speech therapy, to the list of those it is willing to fund. And, perhaps most significantly, it’s announced a month-long consultation process, set to begin on May 1.
MacLeod said she’s “extremely grateful” that she and Ford are on the same page and that he’s prepared to make hundreds of millions in additional funding available even as the budget is scrutinized for savings in other areas. She also said that she wants her ministry to work in conjunction with the ministries of health and education to ensure that children are getting comprehensive care.
“We're doing a whole-of-government approach, with wraparound support for the children with autism,” MacLeod said. Funding for children currently on wait-lists, she explained, will begin moving out even before the consultation process begins — probably within the next week or two.
Where does that leave families of children with autism? Waiting to learn more, is the short answer. The truth is that, while we wait for those consultations, Ontarians will remain in a sort of limbo. We don’t know what the system will look like.
Nancy Marchese, a psychologist with 20 years of experience in autism therapy, said that she and her colleagues are continuing to work with the children under their care. Families are still receiving funding and bringing their kids in. “We’re waiting to see how these consultations are going to work,” she said. “I’m hopeful.” A pause. “And optimistic,” she said, adding that she hopes the consultations will include a focus on financial transparency and accountability.
Optimism is a good thing. A necessary thing, even — especially when times are dark, as they are for so many families who have children with autism. But MacLeod knows that whatever the outcome of this controversy, it’s only the beginning for many families, and not just for those dealing with autism.
“There’s a number of children with special needs in Ontario that aren't getting support right now,” she said. “Kids with [Fetal Alcohol Syndrome Disorder] and other developmental disabilities. This process has allowed me to start having that conversation within the government, particularly with the health minister and the education minister, as well as a few others, about how we need to have a wider view. My goal is to do better for all children with disabilities.”
It’s an ambitious goal, and, given the experiences that two (and counting) governments have had just with autism, a challenging one. But it’s also an important goal. Ontarians will be watching.