Thursday, November 7, 2013

Autism costs Americans an estimated $126 billion annually, a number that has more than tripled since 2006

Autism costs Americans an estimated $126 billion annually, a number that has more than tripled since 2006. For me, this begs the question, what's going to happen to the cost of care as more and more young adults age out of the system, and we want comprehensive programs, where their education continues beyond how to stuff & lick envelopes? What's that going to cost and who will help us then? 

The costs of providing care for each person with autism affected by intellectual disability through his or her lifespan are $2.3 million in the U.S. and £1.5 million ($2.4 million) in the U.K. The lifetime costs of caring for individuals who are not impacted by intellectual disability are $1.4 million in the U.S. and £917,000 in the U.K. (equivalent to $1.46 million) and from where I sit it will only grow as the ASD population increases and more families gain access to critical ABA services and the burden on families has been outrageous. On that note, my thanks goes out to everyone in our federal, state and local government and local advocates who have pushed so long and hard for insurance to cover ABA, and thanks to the affordable care act for eliminating the pre-existing condition barrier to insurance.  

Nick and I began his autism journey with no options except to pay out of pocket or forgo critical services. I am grateful for the progress and shared responsibility between families, private insurance and state and federally funded programs.  Until Obama care, I was unable to change or shop for new insurance because I could not risk being denied. I remember before Nick was diagnosed - he had stopped talking and was suddenly withdrawn - I called my insurance and said "I need my child to see a speech pathologist". The representative on the phone asked me why, and I said "He suddenly stopped talking and I've been told he needs to be evaluated right away".  She said "I can't refer you without a diagnosis" and we went back and forth, I had no diagnosis that was why he needed to be seen, and she held firm that without a diagnosis he could not be seen! I told her that the professional I had spoken to said he should be evaluated for autism. Her reply "I'm sorry but we don't cover autism. I can't help you, and she hung up".  I was blown away. That was cruel, and at the time I remember thinking this is crazy!!!  That was one of the many moments that turned me from a mom into an pissed off advocate determined to get help for families. Here in California thousands of families, state agencies and non profits have worked hard for years and now our families have coverage for speech, OT and ABA (although not always without a fight).  At the same time, we can stop take a breath and be thankful for the places where we have made progress. 

But we're not out of the woods yet, we will need to stay diligent as many states are still fighting for insurance reform as it relates to autism and we've yet to uncover the challenges when it come to our kids who are aging out.  What's going to happen to the cost of care when there's no school everyday and we want more for our children than day programs that find them just sitting around being taught to lick envelopes? What's that going to cost and who will help us then? Sigh, the journey continues. 

Here are links to where I got my statistics and different perspectives on how Obama Care impacts autism care.


  1. I remember fighting with my insurance agency for three months just to get six sessions of speech therapy. The final tally: six sessions at $60 each. Meanwhile, the speech therapist charged me $150 an hour, which made my portion $90. We went to her twice a week, so that generous "award" from our healthcare insurance covered 5 1/2 sessions. What a joke. We spent $27,000 out of pocket for therapies for our son's first year of life, $30,000 for years two and three. I believe by now we have spent the equivalent of a house in Beverly Hills.

  2. Thanks for sharing this blog.This is a good information of the autism services articles and really like your site, Please keep sharing more and more information.

    autism in ireland & HSE autism