The cold calculus of care for children with autism in Ontario

On February 5, Minister of Children, Community and Social Services, Lisa MacLeod, held a press conference with her Parliamentary Secretary, Amy Fee, to announce sweeping changes to the Ontario Autism Program. I sat glued to my screen at my office and then following the announcement, closed my door and cried. For hours after the announcement I could barely turn on my radio, television, or social media. When I did, everywhere I turned, parents and caregivers were in a state of panic and terror.

I have a nine-year-old son, Quinn, who is non-verbal, profoundly autistic, and also has epilepsy and a severe intellectual disability. We, too, have waited on the lists that the minister spoke passionately about “clearing”, repeatedly citing that only 25% of Ontario’s 30,000 children with autism are currently receiving treatment, while over 75% of children are languishing on waitlists.

The Ford government’s solution to this crisis, however, is to demolish the previous program that provided needs-based treatment services, and instead implement a cash payout of up to $140,000 per child’s lifetime (deemed a “childhood budget”). For children entering the new program after the age of 7, the amount is capped at $55,000. If your child, like mine, was diagnosed at age 3, this would entail approximately $20,000 per year until the age of 7, and $5,000 per year until the age of 18.

This is the model of autism service in British Columbia. We left BC in 2017 because of this model and its failure to provide need-based treatment for Quinn. I should have known better; neoliberal policy reform is viral in Canada, and the Ontario government’s announcement proved that the adage holds true: “wherever you go, there you are.”

For those who muse, “hmm those amounts don’t sound so terrible,” consider that there are no other health conditions that ration and deliver publicly funded treatment in this manner. You are not offered a childhood budget for bone fractures or diabetes or cancer and told that once your child turns 18 they will be expunged from the system, only to enter an equally, if not more, cruel adult system. You expect that they will be provided needs-based treatment as determined by medical and health personnel. So, why is this the case with autism?

One of the core reasons is because the primary evidence-based treatment for autism, Applied Behaviour Analysis (ABA), has traditionally been delivered in Canada under Ministries of Children and Community Services. Autism is a neurodevelopmental disorder and disability and most public services delivered to persons with disabilities fall under the political umbrella of family and community services. Public services in Ontario and Canada for persons with disabilities, particularly developmental disabilities, have long and horrific histories of underfunding, institutionalization, and poor care and treatment. Autism is sadly embedded within this archaic framework. And rather than working with families, treatment professionals and experts, to elevate it into modern and effective treatment and support frameworks, Minister MacLeod and the Ford government drove it further into chaos.

Autism has a form of treatment that is evidence-based and effective. ABA has over 40 years of clinical and systematic review evidence that unequivocally demonstrates its efficacy for children and adults, making it the treatment of choice and best practice in the professional and medical literature and community. The evidence further confirms that intensity is critical to symptom improvement and skills gains. Children need to have access, generally, to 20-40 hours weekly of treatment, and interventions must be sustained and/or monitored to prevent regressions in symptoms, skills, and behaviours. In the U.S., after extensive advocacy and some legal appeals, 48 out of 50 states now mandate that public and private health insurance providers must provide clinically appropriate ABA treatment services for persons with autism spectrum disorder.

This type of treatment is expensive; a 40 hour weekly treatment protocol costs approximately $80,000 to $100,000 per year. But please juxtapose this figure with the lifetime costs of treating a child with a heart condition, diabetes, or cancer, or even the hundreds of millions on non-life-threatening conditions such as hip and knee replacements. Ultimately, I have no idea what it costs to treat cancer, fix a diseased aorta, or repair a fractured femur. And you know what? That’s fine with me. I don’t want to know because I don’t want to live in a society where we coldly ration essential health care treatments.

We pay these costs through our tax dollars because not only is a single payer system like ours demonstrably more cost efficient, it is also more just and caring. But if we do need to justify the treatment of autism, the Senate of Canada already did so in 2006, in its report titled, “Pay Now or Pay Later: autism families in crisis : the final report on the Enquiry on the funding for the treatment of autism” which highlighted the extensive future public, individual, and familial costs of failing to treat autism across the lifespan, and in particular, during childhood.

The Ford government’s announcement provoked so much fear, panic, and anxiety because this policy change is grossly punishing to children and families. Most will not be able to afford the out-of-pocket costs (for my child that equates to $80,000 in treatment costs minus $5,000 in government funding, and I am a single parent working full-time), and for those that can afford treatment, it will likely be at greatly reduced intensity levels.

Imagine you or a family member acquires a health condition or disorder, where a treatment exists that will greatly improve your symptoms and long-term prognosis. Instead of assessing your needs and delivering that treatment, the government hands you a cheque for $5,000 (and a bureaucratic nightmare of endless paperwork).

What do you do? Do you go into debt? Do you quit your job to care for that family member? Do you deny them the treatment they need? Do you live with the crushing guilt of providing minimal or sub-par treatment because that’s all you can afford? These are the questions I, and thousands of other parents and caregivers are left with: devastating questions when there are clear answers which remain ignored by the government—regulate the system, provide ABA under our current public health care system, and fully and properly fund needs-based treatment for all individuals with autism.

Dr. Sherri Brown is a researcher, writer and autism advocate living in with her son in Ottawa. She can be reached at [email protected].