Skip navigation

Calls to Action

MedClaims Liaison, Autism Speaks Survey Reveals Key Insurance Reimbursement Challenges Facing Families Seeking Autism Care

March 01, 2012

HAWTHORNE, NY (March 1, 2012) –  MedClaims Liaison (MCL), a leading national patient advocacy company, and Autism Speaks, the world’s largest autism science and advocacy organization, released the results of a joint survey demonstrating families seeking autism-related care are bewildered by the myriad challenges they face obtaining proper insurance reimbursement.
The survey was initiated in December 2011, when over 28,000 requests for participation were sent to advocates who have registered to receive alerts from Autism Speaks in six states where autism insurance reform laws have been enacted - California, Texas, New York, Pennsylvania, New Jersey and Connecticut.
Survey Highlights
·A majority of respondents indicated their confusion around their own state’s law and how it impacts their coverage:   
   o   26% responded “I don’t know” when asked if they lived in a state that has passed autism insurance reform unaware that in fact laws were in place
   o   68% said they lived in a state that had passed reform, but 53% did not know how their own particular health insurance policy was regulated by the law
A majority of respondents (54%) characterized the quality of coverage for autism-related services provided under their policy as “poor” or “unacceptable”; more than half obtained services from healthcare providers who do not accept their insurance
77% of respondents are frustrated by the process of dealing with medical bills and reimbursements
   o   47% say the amount of time they have had to spend on claims and reimbursements has conflicted with work
   o   55% are having trouble affording their medical expenses
The lack of understanding is severely impacting access to reimbursements as 40% of respondents said they “never” submit claims if they do not think the treatment will be covered by their policy
“While it is well known that this patient population suffers from acute financial burdens and a stressful reimbursement landscape,” said Mitch Kaye, CEO of MedClaims Liaison, “the survey revealed challenges even greater than we had anticipated. Most troubling is the number of families – 86 percent -- who would utilize more necessary care for their children if some of the difficult reimbursement issues did not exist. MCL’s mission is to reduce this burden and improve the financial outcomes for the families – we are very committed to this community. ”
Autism Speaks participated in the survey to gauge the level of understanding within the autism community of insurance reform and how broadly coverage is being accessed.
"The results of this survey clearly indicate that passing autism insurance reform laws is just the first phase of helping families access the services and treatments their children need,” says Peter Bell, executive vice president of programs and services for Autism Speaks. “Once a bill is enacted, we must turn our attention to implementation and enforcement. We are committed to helping families understand how to take advantage of these laws once they become effective.”
For more information on Autism Speaks and autism insurance reform in the states, visit Autism Votes at For more information on the survey results or about MedClaims Liaison’s advocacy services, please contact Amy Ford Keohane, President & CMO, 914.593.1726.
Survey Methodology
The states surveyed were selected on the basis of either having an autism reform law in place (Texas, Pennsylvania, New Jersey and Connecticut) or because they had just enacted a law and were in the process of implementing it (California and New York). The survey was not intended to be scientific; participation was incentivized by offering a small donation from MCL to Autism Speaks for each completed survey. Almost 900 completed surveys were received.