The topic of autism insurance reform was the focus of the recent Autism Speaks Law Summit in Washington, D.C., particularly autism coverage by self-funded insurance plans which are not subject to state reform laws.  Little Star Center Executive Director Mary Rosswurm and Board Member Michele Trivedi attended the three-day event which was held at the George Washington University Law School, along with other parents, lawyers and practitioners representing 33 states.

One of the biggest challenges parents face after receiving a diagnosis of autism in their child and researching treatment options is figuring out how to pay for the associated costs.  Since autism is a medical finding and disability that requires custom programming and training over time to help the child learn to function as independently as possible as they age, parents look to their families’ health insurance plan to help cover expenses.  This often becomes the next trial for parents of children with autism.

To date, thirty states in the U.S. have enacted some version of autism insurance reform, requiring insurance companies to cover autism-related costs as a medical disorder.  In the remaining states, the discussion continues.  The core dilemma is that insurance companies claim that autism is not a medical problem but an educational problem to be addressed and funded by schools. The purpose of school is not to treat autism.  Schools are obligated to accommodate a child with autism and his or her disability in order to provide the child with an appropriate education; schools do not provide medical treatment for autism.  Education and medical treatment are not interchangeable terms. The end result of this argument is that everybody suffers.

The 7th Annual Autism Law Summit agenda addressed a number of autism insurance reform issues including: evidence-based treatments for autism; new guidelines for health plan coverage of applied behavior analysis (ABA) treatment for autism from the Behavior Analyst Certification Board (BACB); the history of autism insurance reform; self-funded health benefit plans vs. fully-funded insurance; the claims process from patient advocate and national provider perspectives; federal legislation of interest to the autism community; autism and the military; litigation to secure insurance coverage for autism; how to introduce a bill; experiencing a mock hearing on an autism bill; undermining legislation; an overview of the implementation and enforcement of coverage; case discussions; grassroots advocacy; and the benefits of adding an autism benefit.

Michigan Lieutenant Governor Brian Calley delivered the keynote remarks, in which he discussed the efforts in his state and how he approached autism insurance reform as a taxpayer issue.  “We can either do the right thing upfront or pay for it down the road.”  An actuarial study which provides “real” cost impact data (compiled by Autism Speaks) proved to be a critical resource which countered insurance company inflated cost claims.

Little Star board member and mother of a child with autism, Michele Trivedi, participated in a panel discussion on insurance implementation. Trivedi, a volunteer health insurance advocate, is an active member of the autism community, volunteers with the Autism Society of Indiana (ASI), the Indiana Resource Center for Autism (IRCA,) and Autism Speaks to promote health insurance coverage for autism across the country.

“We are very fortunate in Indiana, that through the advocacy of parents, IRCA, ASI and the Autism Research Centre (ARC), our state legislature recognized more than a decade ago that autism is a treatable neurological condition,” she said.  “It also acknowledged that applied behavior analysis (ABA) is a medical treatment for autism, when our Indiana Health Insurance Mandate was passed in 2000.

“Following the lead of autism mandate states, several self-insured companies have adopted their own autism treatment benefits.  In Indiana, Eli Lilly and IU Health, formerly Clarian Health, for example, follow the Indiana Autism Mandate.  Other companies that provide an autism health insurance benefit can be found on the Autism Speaks website.  Several employers have found that an autism benefit is not nearly as expensive as they were led to believe, and that it can be a recruitment and retention tool.  At the Autism Speaks Law Summit, a representative from Capital One Bank described the success they have had with their autism benefit as a recruitment and retention tool for all employees, not just parents of children with autism.  Employees feel that the benefit shows that the banks’ values better align with their own values.”

Trivedi serves on the Health Benefits Mandate Task Force for Indiana (appointed by Governor Mitch Daniels) and was appointed in 2002 by the Commissioner of the Indiana Department of Insurance to represent the autism community on health insurance issues for the development of Bulletin 136, which mandates insurance coverage for autism spectrum disorders.  She donates her time to assist fellow Hoosiers with insurance-related issues. Her daughter, Ellie, was the “test case” for the enforcement of the Indiana Autism Mandate. Trivedi is happy to assist parents who wish to approach their self-insured employer regarding adding an autism health insurance benefit.  She may be contacted at [email protected].

“It was really interesting to speak with parents, lawyers and advocates from states where there is no mandate,” said Mary Rosswurm, Executive Director of Little Star. ”We have been so lucky in Indiana to have such a strong mandate and work with insurance companies that have been so generously funding Hoosier children’s ABA programs for a decade. Autism affects so many people. It is treatable and the research shows that early intervention is key. I believe these last few non-mandate states are eventually going to do the right thing.”