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How Changes To Ontario's Autism Program Fail Families Like Mine

The reality is that zero per cent of the province's most vulnerable children will receive funding to be able to afford comprehensive ABA.

Families on the Ontario Autism Program's (OAP) waitlist finally heard from the Minister of Children, Community and Social Services last week. Ontario will #ClearTheWaitlist for therapy services by divvying up the budget across all of the families with a family combined income of less than $250,000. As parents of an 11-year-old boy with severe autism — 240 on the wait list in the Eastern Region — we should be celebrating.

Not so much.

Social Services Minister Lisa MacLeod.
Social Services Minister Lisa MacLeod.

The message was clear:

  1. The new OAP is better. Wait lists will be cleared and diagnostic hubs get more money;
  2. The new OAP is more flexible. It gives families choice in how they spend their direct funding; and
  3. The new OAP is fairer. It aims to support 100 per cent of the families, and not just the 25 per cent in service.

Let me take a stab at unpacking why so many of us whose children have severe autism have lashed out in response.

1. The new OAP takes good ideas and grafts them onto a bad plan.

Many parents (myself included), having experienced the system's inefficiencies firsthand, advocated for decoupling the costly regional service providers (RSP) and introducing a direct funding system. The devil is in the details, however. Like Michael Taube, I am concerned that this new OAP is ill conceived.

Concerns are already being raised about the future of RSP services, and I know of no clinical supervisors whose list of clients are not already full. While Ontario boasts the highest number of Board-Certified Behaviour Analysts (BCBAs) in Canada, building more therapist capacity alongside clinical psychologists and developmental pediatricians will take time. Handing out cheques will not change that fact. Instead, it will beg the question of where those tax dollars actually go.

2. The new OAP may be more flexible, but this is not necessarily a good thing.

Last week's announcement also signalled the death of the OAP as a clinical program. Applied behaviour analysis' (ABA) effectiveness depends on a number of factors of which autism severity, age and level of intensity are key. For children with severe autism, the recommendation is typically comprehensive ABA, i.e. about 25 to 40 hours per week. The new annual funding cap of $20,000 for toddlers and $5,000 for school-age kids puts its delivery outside our grasp.

For context, $20,000 is less than half of what my son received in 2011 under the then-Autism Intervention Program, with direct funding at $39 per hour, 25 hours per week. That was the maximum funding, at that time, and the minimum recommended intensity given my son's diagnosis. Under the Liberal's OAP, the government adjusted the rate to $55. Today, the reality is that zero per cent of the province's most vulnerable children will receive funding to be able to afford comprehensive ABA. We should expect, then, that some families would opt for less-costly services not necessarily aimed at delivering clinical outcomes.

The author's son, Mica, has a diagnosis of severe autism.
The author's son, Mica, has a diagnosis of severe autism.

This does not seem to concern for Social Services Minister MacLeod, who recently quipped that the Ontario Association of Behaviour Analysts (ONTABA) "don't believe that there's any other therapy" and that "some parents are telling us that other therapies work." Having reviewed the clinical expert advice, she must be aware that ABA is a scientific approach — not a belief — and is the gold standard around the world. While new approaches are emerging, no other comprehensive intervention is clinically recommended at this time. To suggest otherwise does children a disservice and raises alarms as to the minister's understanding of the file.

3. The new OAP is as unfair as the old OAP — just in a different way.

The new OAP is not fair — no matter how many times the minister says otherwise. That does not mean that its predecessor was, either. My son has been on the wait list since December 2016. As a toddler, he waited on another list for almost two years. For most of his life, we have paid out of pocket.

Ironically, I advocated for much of what this program looks like on the surface, e.g. moving away from managing expectations and wait lists and championing individualized programming that includes occupational therapists, speech and language pathologists, and others. What I did not advocate for, though, was the replacement of a program focused on clinical need with one focused on income support.

Our family will not get much from the new OAP. I can live with that, if it means that a family like mine is actually getting comprehensive ABA as a result — but that's not the proposition. The minister says it is a trade-off, the program was "nearing 'bankruptcy,'" and that this is the best she can do. I say her best is not good enough. Her program objective should not be an empty waitlist. That is as bad as encouraging "churn" by counting the number of kids per year under the old system. Instead, she should be figuring out how to ensure kids get the levels of sustained ABA intervention they need.

Here are a few suggested places to start looking: Most kids on the waitlist are school-aged, and yet Ontario balks at ABA intervention delivered in schools. #ABAinOntSchools works and should be at the centre of the solution.

Ontario could also leverage fiscal tools to reward parents who can pay up front at tax time while using the program to fund those who cannot. Regulatory measures for private insurers and for the practice of ABA are other ways the minister could do better.

Not one single parent expected Ontario to announce a program that would solve all their child's challenges. What we did hope for, though, was a plan that respected our children's futures and pooled resources across government to do better. Minister MacLeod has said that she is not interested in responding to advocates or in revisiting her position. I hope this is just political bluster. If not, after reality sets in, she may find herself with very few quotes of support to reference.

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