Stelios Georgiades served as a member of the Government of Ontario’s ASD Clinical Expert Committee and the Government of Canada’s Autism Working Group.
Access to autism services has long been a major challenge for families living in Ontario, and it didn’t get much easier with a series of proposed changes to the Ontario Autism Program (OAP) in February. In a nutshell, Premier Doug Ford’s government has proposed scrapping the OAP’s direct-service public model, in which autism services are managed and delivered through publicly funded regional centres, and replacing it solely with autism funding that flows directly to families, with the amount dependent on the child’s age and the family’s income. By focusing on the private, direct-funding model alone, parents would ostensibly be able to go out into the world themselves and pay for the private services they want.
These changes were primarily driven by the legitimate desire to tackle wait lists. But the changes themselves were rushed, unsupported by scientific evidence and actually increased inequities by, for example, granting children older than six a smaller amount of funding, meaning that a later-in-life diagnosis likely means fewer services funded by the government. But perhaps more importantly, the new changes failed to take into account the many and variable needs of children and their families. Some of these families protested and campaigned, prompting the government to hold consultations and create a new expert panel (though that should have happened before the changes were announced in the first place). Still, just this week, one of the province’s largest autism treatment centres laid off more than 100 people, and more job losses are expected. The path forward remains too murky for families.
Autism, after all, is complex. In most cases, children present with variable combinations of neurodevelopmental, physical and mental-health issues. As a result, an appropriate plan of care for children with autism requires the integration of multiple specialized disciplines – pediatrics, psychiatry, psychology, behavioural analysis, neurology, speech/language pathology and occupational therapy – as well as various systems, from health to education and community. It also requires an enormous amount of time and energy. Asking parents to take responsibility for bringing all that together is simply unfair.
Moreover, by scrapping the public model, the government can no longer ensure that the private services received by any given child/family will be truly integrated and coordinated within and across systems of care. This is not a criticism of private-service providers; it is more of a friendly reminder that our public autism regional centres do have the capacity, infrastructure, experience and expertise to offer interdisciplinary, evidence-based interventions for autistic children and their families. But in the absence of renewed support, these regional centres will soon be gone.
To be clear, the problem is not that these new rules give families the option to choose a private model. In fact, a version of that was also available in the original OAP. The problem is that families are not also being offered the public-model option anymore. This, to me, is a classic example of the state offloading the tremendous responsibility for managing autism services onto families. It forces me to ask: Would they do this for any other health condition?
No doubt, the way the previous OAP was being implemented was a problem. But asking families to inherit those problems on behalf of the OAP is not the right answer. Instead, the government should work with experts and families to ensure that all children with autism have equitable and timely access to the services, interventions and supports they need to live full and productive lives.
If the health and well-being of children with autism are really the priority here, then the government should build a needs-based autism service program; invest in the human capital of experts and families with lived experience; utilize available public infrastructure and capacity at regional centres; coordinate services and supports across systems; and bring all of these pieces together by helping guide children and families along their journey toward the best life possible. In the meantime, the government can increase support for the existing autism program, and more carefully plan the transition of families into the new program once that is developed and tested.
As a scientist, every time a new government comes to power, I renew my commitment to work with them and remain optimistic. To this day, and despite my disagreement with many of the decisions made by Mr. Ford’s administration, that’s still the case. I hope the government’s new expert panel will capture the state of science and the public’s wisdom, and make the necessary recommendations to construct an improved, needs-based autism program.
But as more layoffs loom and the landscape remains unsettled, it’s hard to hold on to that hope.
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