Feds must show real leadership on autism

As a parent of a child diagnosed with autism more than a decade ago, I’ve watched the provincial and federal policy debates about autism with great interest – and even greater disappointment.

Although I used to believe that one of the things that made Canada a great country was its publicly-funded health-care system, my son’s diagnosis opened my eyes to discrimination under medicare. There’s no cure for autism. But solid peer-reviewed evidence has shown for decades that intensive behaviour intervention (IBI), based on the principles of applied behaviour analysis (ABA), can have a dramatic impact on the development of kids with autism.

Unfortunately, the treatment is not covered by medicare across the country.

In most provinces, IBI/ABA is not offered by ministries of health to those who need it, when they need and for as long as they need it. When programs are available, they’re typically offered by ministries of social services and are extremely limited. They’re also plagued by unconscionable wait lists – often years long.

My family spent more than $40,000 on such therapy in the private sector in the first year while waiting for government-provided treatment for our son. This wasn’t sustainable for us, nor is it for most Canadians.

More recently, when I inquired about placing our son in a group home in Ontario, I was told he couldn’t be placed on a list until he’s 18 – and the average waiting period is a decade long. Such dramatic waits for care facilities for adults with autism is replicated across the country.

So what kind of leadership has the federal government demonstrated on this file? Not much.

But recently, they’ve been invited to embrace a new proposal.

In November, an expert working group on autism created by the previous federal government presented their final report to Health Minister Jane Philpott. A proposed business plan for a Canadian Autism Partnership (CAP) and a request for support, at $19 million over five years, was put forth. Philpott now must determine whether to proceed with this autism partnership model.

Unfortunately, CAP doesn’t offer autism families relief.

CAP gives an overview of its proposed structure (board of directors, national director, 11 employees, advisory council), a mission (address issues related to autism using a shared leadership approach), and a process (consultations, issue identification, agenda setting, problem-solving, mobilization, evaluation, measurement, monitoring) – but that’s about it.

In other words, the proposal involves the creation of another bureaucracy.

Those involved with the working group and supporters may be excited about a new bureaucracy, but many in the autism community – myself included – shake their heads in disbelief.

The last thing autism families need is more bureaucracy. What we need from the federal government is real leadership on autism – now.

The CAP proposal raises numerous concerns and risks.

First, the plan doesn’t mention specific gaps in policy or priority issues, and it doesn’t give concrete examples of how such issues could be resolved with the new model or when.

Second, we already have a public health agency and a federal Department of Health. Are these institutions and their provincial counterparts not adequate to conduct consultations, collaboration, problem-identification and decision-making? A new bureaucracy will likely render the possibility of concrete action to resolve policy and program gaps across the country even more remote.

Third, the CAP model doesn’t actually provide the partnership with any authority to make changes to public policy. And it certainly won’t have the resources or legislative power to make meaningful decisions.

Instead of a new bureaucratic structure, Philpott should consider how the federal government can demonstrate leadership, exercise influence and put some money on the table to negotiate an accord with the provinces that would address three recurring issues as priorities for autism families:

the lack of health-care (medicare) coverage for autism treatment (ABA/IBI);

the lack of ABI/IBI in the school systems;

the lack of appropriate housing accommodation for autistic adults.

Where there is a political will to do something, there is a way. Too many families have been left without support for too long.

— Andrew Kavchak lives in Ottawa with his wife and two teenage children, one of whom has autism. He studied at Osgoode Hall Law School and was a federal civil servant before retiring last year. He has protested on Parliament Hill for a National Autism Strategy regularly since his son was diagnosed over a decade ago. 

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