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IAN Data Used to Support Autism Insurance Bill

Date Last Revised: 
May 29, 2014
Date Published: 
March 15, 2011

Photo of Ellie Gordon Simon with Dr. Paul Law and Judith Ursitti.On March 9, 2011, IAN's Director, Dr. Paul Law, and members of the Maryland autism community assembled at the state capitol in Annapolis in support of Senate Bill 759/House Bill 783, the autism insurance reform bill.

Also known as the "Coverage of Autism Spectrum Disorders" bill, this legislation would require private health insurance companies to cover the diagnosis, testing, and treatment of autism spectrum disorder (ASD).

In support of the bill, Dr. Law provided testimony about the treatment costs that families in Maryland incur overall, and the amount spent on applied behavior analysis (ABA), specifically. He based his figures on the information that families have contributed to IAN Research. IAN Research data have been used many times, at both the federal and state levels, in testimony supporting insurance coverage of ASD treatments.

Among the other people who provided testimony was Ellie Gordon Simon (pictured above with Dr. Law and Judith Ursitti, Autism Speaks regional director of State Advocacy Relations). Following is Ellie's testimony:

"I would like to thank you for letting me talk about my family, and the impact ABA has had on all of us. My name is Ellie Gordon Simon. I am 11 years old. I live in the 11th district of Baltimore County. I came here last year to speak to the General Assembly. I have a little brother with autism. His name is Danny and he is 9 years old.

"When Danny couldn't speak I almost felt like I didn't have a brother, like he was stuck inside this shell and was yelling and screaming to get out but no one could hear him. After he started ABA and he learned how to talk it was like I met a whole new person and we could go outside and I could help him ride a bike or play basketball.

"I remember when we had people come over to help Danny to learn how to zip up his coat or speak. Now he is doing big LEGO® sets in 1 or 2 hours and he can tell us if he needs help. And he can tell you anything about Black History Month, from Rosa Parks to Martin Luther King Jr.'s "I Have a Dream" speech. He is a walking, talking Google!

"I remember how he couldn't communicate and he would scream and throw up because we didn't know what he wanted. If he was upset he would vomit because he couldn't tell us what was wrong.

"If the ABA therapists didn't come I can guarantee Danny would not be able to talk or do LEGOs. When I was 4, he used to vomit when I made eye contact with him at the dinner table. Now he'll give me a guilty smile like I know something I am not supposed to know. (Like every brother should.)

"And since he stopped having ABA therapists come to our house he'll gag at my food or when Mom puts a carrot on his plate and have tantrums if he doesn't get to watch his DVD player at dinner. It is not nearly as bad but you could see the difference this had to our family.

"My family spent more than a quarter of a million dollars on it. That is enough to buy season tickets to the Ravens!

"I hope other families could have this help too because it was such a big help to us. Now thanks to ABA I feel like I have a brother.

"ABA can change a changed mine.

Thank you for listening."

Our heartfelt thanks goes out to the families participating in IAN Research and others who contribute their time and energy to better the lives of people with ASD.

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