by Rick Remington
The University of Utah S.J. Quinney College of Law hosted more than 100 lawyers, legislators, health care professionals, state regulators and advocates from 33 states on Oct. 21-22 for the 6th Annual Autism Law Summit, sponsored by Autism Speaks, the nation’s largest autism science and advocacy organization, and the Utah Autism Coalition.
College of Law Professor Bonnie Mitchell and Utah state Representative Merlynn Newbold welcomed the participants to the conference which yearly attracts the nation’s pre-eminent experts on autism law, insurance and advocacy. The focus of the conference is ending insurance industry discrimination against families caring for loved ones with autism through legislation, litigation and partnering with employers.
Autism is a general term used to describe a group of complex developmental brain disorders that the national Centers for Disease Control and Prevention has estimated now affects 1 of every 110 children born in America. Yet, insurers routinely deny autism benefits for early intervention and other therapies that have been proven to improve the functioning of individuals with autism. As a result, families are forced to pay $50,000 a year or more in out-of-pocket expenses for therapies or forego treatment altogether due to the cost.
“Autism Speaks chose Salt Lake City for our 6th Annual Autism Law Summit in order to bring the event to the West for the first time,” said Lorri Unumb, Esq., Autism Speaks’ vice president for state government affairs. “We also want to begin laying the groundwork for a campaign in 2012 to bring autism insurance reform to Utah. We were honored to have an institution with the prestige of the S.J. Quinney College of Law serve as our host.”
Laws barring health plans from refusing to cover the expenses of proven behavioral therapies for children and individuals with autism have been enacted in 28 states, including Nevada, Arizona and Colorado. The Utah Autism Coalition and Autism Speaks plan a major legislative effort in 2012 to enact autism insurance reform in Utah.
A highlight of the event was the presentation of Autism Speaks’ 2011 “Speak Out” award to Lou Melgarejo for his YouTube video, “Fixing” Autism, which he produced in honor of his daughter Bianca and the difficulties faced by families in gaining insurance coverage for needed therapies.
A former professor at George Washington University Law School, Unumb has a son, Ryan, with autism and spearheaded the enactment of ground-breaking legislation in her home state of South Carolina in 2007 to end insurance industry discrimination. Unumb and her husband, Dan, released the first-ever comprehensive textbook on legal issues related to autism, called “Autism and the Law.”
Unumb opened the conference with a presentation on “Autism Insurance Reform Across America,” which concluded with recognition of the five states that have enacted reform laws thus far in 2011: Arkansas, Virginia, West Virginia, Rhode Island and California. The New York legislature has passed a bill that awaits signature by Gov. Andrew Cuomo.
Other highlights of the agenda included:
- A “Politics 101” presentation by Missouri State Representative Jason Grill relating lessons learned from his experience in the Missouri legislature gaining passage of autism insurance reform
- A panel discussion on how to convince companies that self-fund their employee medical plans to add an autism benefit
- An analysis of credentialing issues that have been raised for behavioral therapists
- An update on litigation efforts against insurers provided by attorneys Dan Unumb, Ele Hamburger of Washington and Dave Honigman of Michigan
- A presentation on regulatory implementation issues by panelists from Texas, Kansas and Massachusetts
- A how-to session for Utah representatives and others on developing successful grassroots advocacy at the state level to gain autism insurance reform
- A robust discussion of “Enforcement of Coverage” by panelists from the California and Missouri departments of insurance and MedClaims Liaison
The conference concluded with a mock legislative hearing on autism insurance reform, providing an opportunity for attendees to experience first-hand the challenges frequently experienced by advocates.
Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Since then, Autism Speaks has grown into the nation’s largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.