By Sherri Brown, PhD
Dear Neighbours 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 US. 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 ABA treatment for children with autism. Despite decades of research that have demonstrated ABA as a highly effective treatment intervention in reducing or eliminating symptoms of autism and yielding improvements in behaviour, communication, and social skills, Canadian governments do not see it as “medically necessary”. Some provinces provide partial coverage, but it varies widely and treatment waitlists can be as long as four years.
Now, I know you have serious challenges with HMOs and private health insurance- I do not wish to dispute or minimalize this. However, from one neighbour to another, I want you to take a moment to congratulate yourselves for your hard won successes of having 41 of 50 states who have enacted insurance reform laws to mandate coverage for applied behavior analysis (ABA) treatment for children with autism spectrum disorders. By mandating coverage for ABA, state legislators have recognized and enshrined your children’s rights to medically necessary treatment.
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 US now diagnosed (we suspect autism prevalence is similar in Canada, but we have NO national autism surveillance program so we’re basically guessing), Autism Votes harnesses the power in numbers of voters in states (and Federally) to lobby and advocate for insurance reform, new legislation (the ABLE Act, for example) and other state and federal initiatives benefitting families and individuals with autism.
You should be very 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 May 6, Hawaii is poised to become the 42nd state to pass insurance reform), but even when these states sign on, and I hope they will, the one thing I have 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” treatment, the Court was not in a position to compel the Government to pay for it. So, Canadian parents are now left to learn from and emulate your successful advocacy efforts; we must compel legislators to change the law (the Canada Health Act) to include ABA treatment for individuals with autism.
I am a proud Canadian, but this pride will never override my love and concern for my disabled 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 treatment interventions. Raising a disabled child is difficult enough without having to assume another full-time job of chronic advocacy. But you, dear neighbours to the south, have 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.
Love,
One Canadian Autism Mom
Dr. Brown is a lecturer at Simon Fraser University with research interests and experience in the politics of access to health care and treatment. She is the mom to five year old Quinn, a nonverbal 5 year old boy with autism spectrum disorder.
Citation for this article:
Brown, S. (2015). A Canadian Love Letter to American Autism Votes Supporters and (Specified) State Legislators. Science in Autism Treatment, 12(3), 28-29.
