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A Love Letter to American Voters From a Canadian Autism Mom

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Dear Neighbors to the South,

First, an admission. We often walk around up here, north of the 49th parallel, with puffed-out chests when comparing our universal and publicly funded health care system to your system. We may even sneer a little, “Can you imagine having to live in the U.S. where a private health insurance company dictates decisions about your health? Your child’s health?” When I began my postdoctoral fellowship in 2012 in San Francisco, I certainly arrived at the airport full of this brand of arrogance.

This was before my child’s autism diagnosis. This was before I realized how having a child with a disability could change everything you thought you once knew.

Indeed, when we became increasingly concerned about our son’s development, my first instinct was to race back home to the supposedly safe haven of Canadian healthcare. My arrogance and ignorance would end up costing us all dearly. Because much to my surprise health insurance in Canada does not cover Applied Behavior Analysis (ABA) therapy for children with autism. Currently, Canadian governments do not see it as “medically necessary.”  Some provinces provide partial coverage, but it varies widely and waitlists can be as long as four years.

Now, I know you have serious challenges with HMOs and private health insurance  in no way do I wish to dispute or minimize this. However, from one neighbor to another, I want you to take a moment to congratulate yourselves for your hard-won success of Georgia becoming the 41st state that’s enacted insurance reform laws to mandate coverage for applied behavior analysis (ABA) therapy for children with autism spectrum disorders. By mandating coverage for ABA, state legislators have recognized and enshrined your children’s rights to what I believe is medically necessary therapy.

These state legislators, however, have largely come to this conclusion through sustained advocacy of parents like yourselves, and in particular through the efforts of Autism Votes. With 1 in 68 children in the U.S. now diagnosed (we suspect autism prevalence is similar in Canada, but we don’t currently have a system in place that collects this data, so we’re guessing), Autism Votes harnesses the power in numbers of voters in states (and federally) to lobby and advocate for insurance reform, new legislation and other state and federal initiatives benefitting families and individuals with autism.

You should be proud of this, of Autism Votes and of your state legislators who took seriously the very real threat of a large cohort of voters who presented them with a reform agenda. They listened this time. You have 8 states remaining; as of July 16, 2015, Hawaii became the 42nd state to pass autism insurance reform. But even when these states sign on — and I hope they will — the one thing I’ve learned in the short two years since my son’s diagnosis is that advocacy is chronic. None of us live in the kind of society yet that treats our children with the respect, support, and justice to which they are all entitled.

A group of parents in Canada took their complaint regarding the absence of insurance coverage for ABA to the Supreme Court of Canada in 2004, and the Court ruled that while ABA was a medically necessary therapy, the Court was not in a position to compel the Government to pay for it. So, Canadian parents are now left in a position to learn from and emulate your successful advocacy efforts; we must compel legislators to change the law (the Canada Health Act) to include ABA therapy for individuals with autism.

I am a proud Canadian, but this pride will never override my love and concern for my child. I wish we had stayed in California. I wish I didn’t have to fight this fight. I wish I could simply parent my child with the knowledge that his disability is well-supported with effective therapy interventions. Raising a child is difficult enough without having to assume another full-time job of chronic advocacy.

Dear neighbors to the South, you’ve shown me change is possible, and for that I thank you from the bottom of my heart. Thank you for renewing and sustaining my hopes for a better future for our children.

One Canadian Autism Mom

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Originally published: July 17, 2015
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