Pioneer Parents in Indiana - about Michele Trivedi

By Angela Arlington

Michele Trivedi remembers the frustration of health insurers refusing to cover autism. “When my child was diagnosed, since she had a major regression of speech and behavioral skills, the doctors wanted to test her for a brain tumor. None of that testing was covered by our insurance due to her diagnosis of autism – even though the tests were for brain tumors. The first year of her autism diagnosis, we paid $75,000 out of pocket for testing and treatment, even though she did have “good” health insurance – all because insurers refused to cover autism and declared it a “pre-existing condition.” Her medical bills were twice our income at the time – I had to give up my career when we moved to Indiana, and my spouse was in medical residency, making about $35,000 per year. Thankfully, my in-laws paid the medical bills so that we could access treatment. We were lucky.”

Before the Indiana Autism Insurance Reform Law was passed in 2000, many insurance carriers in Indiana would drop children from their plan once they were diagnosed with autism – rendering them “uninsurable due to a pre-existing condition.” This meant that the child had to go on the state’s high-risk plan with a long waitlist or go uninsured. Some insurers would allow the child to stay on their plan, but the insurer would not cover anything remotely related to autism, such as medications, seizure treatment, MRI or CT scans of the brain.

“I contacted my HMO on the first day that the autism coverage law went into effect to find out how to get services covered. After spending a few hours on the phone being passed from one supervisor to another, I was told, “Yes, we heard about that law, but we think it is going to get repealed next legislative session, so we are not making any changes.”

Many parents had fought for so long, and Michele was not going to be defeated, “So, I filed complaints with the Indiana Department of Insurance and filed appeals with my HMO. I wrote letters to each legislator who voted for the law, especially the authors and co-sponsors. I gathered stories from parents whose treatment plans and attempts to get pre-authorization for services were ignored. The staff at The Arc of Indiana, Autism Society of Indiana, and members of The Autism Coalition of Indiana sent families to me for help to navigate appeals and file complaints. I spent many hours and put many miles on my car going to Indy to the Department of Insurance to meet with regulators and many hours at the Statehouse testifying against “mandate lite” bills that would allow insurance plans to pick which state mandates they could “opt-out of.” The autism coverage law was a main target of these bills – it was a way to repeal the “autism mandate” without the autism community being aware of it. For three legislative sessions in a row, these mandate lite bills were introduced and defeated.”

Michele remembers the beginning of her new vocation. “After my HMO was audited by the Department of Insurance and ordered to cover autism treatment, ABA, and all back claims to the date the law went into effect, I was asked by the Commissioner of the Department of Insurance to join a committee to draft the regulator’s bulletin to outline enforcement parameters for the autism mandate law requirements. I was the only consumer advocate on the committee, the rest of the members were from the insurance carriers or insurance industry lobbyists.” Bulletin 136 still guides autism insurance coverage in Indiana to this day.

In 2005, three moms in South Carolina rallied their community to introduce a bill after learning about the Indiana law and contacted Michele for assistance. In 2008, they passed the second autism mandate. One of the moms later joined Autism Speaks to head their efforts to assist states in passing meaningful autism health insurance reform laws.

Michele continues to help families and autism treatment providers across the country to gain equal access to health insurance coverage for people with autism and other developmental disabilities. She is currently serving on a national committee to establish accreditation standards for ABA providers representing the family perspective.

If you would like to be a part of this Pioneer Parent section or to nominate someone else to be in an upcoming issue of Special Needs Living, email us at SpecialNeedsLivingIndy@n2pub.com.