Autism insurance coverage, family-by-family, plan-by-plan and state-by-state

The 6th Annual Autism Law Summit, dedicated to the passage, implementation and enforcement of meaningful autism insurance reform across the nation convened last week at the University of Utah’s Susan J. Quinney School of Law. Lorri Unumb, Autism Speaks VP of State Government Affairs, facilitated the Summit, as she has for the past six years.

The Summit has evolved from an informal gathering of a handful of national advocates, to a capacity-level event from 33 states. Once again, parents, providers, attorneys legislators and regulators, create remarkable momentum in the effort to create a system where individuals diagnosed with an ASD can access coverage for the life-changing treatments they need.

The “Speak out” award to Lou Melgarejo, producer of the “Fixing” Autism video in honor of his daughter Bianca and the difficulties faced by families in gaining insurance coverage for needed therapies set the stage for the jam packed summit.

Utah Representative Merlynn Newbold and Professor Bonnie Mitchell from the S.J. Quinney College of Law, welcomed attendees prior to Lorri Unumb’s presentation,” Autism Insurance Reform Across America.” Five states that passed legislation since the previous Summit: Arkansas, Virginia, West Virginia, Rhode Island and California received honorable mention.

MI State Representative Jason Grill presented “Politics 101” relating lessons learned from his experience in the Missouri legislature’s passage of autism insurance reform.

Bryan Davey, PhD, BCBA-D (AZ) and Colleen Allen, PhD, CCC/SLP (MI); employer representatives Doug Green of DTE Energy (MI) and Jeremy Shane of HealthCentral(MD) and parent advocate Karen Fessel, Dr. PH(CA) presented “Convincing Self-Funded Companies to Add an Autism Benefit.”

Misty Bloom, JD of the Behavior Analyst Certification Board(FL); Andrea Chait, PhD, BCBA-D, NCSP (RI), and Jill McLaury, MS BCBA (WV) gave an overview of the provider credentialing issues.

I joined attorneys Ele Hamburger (WA), Dan Unumb (SC) and Dave Honigman (MI) for an update on litigation efforts against insurers.

Billy Edwards, MS, BCBA (TX); Mike Wasmer (KS), and Amy Weinstock (MA) shared their experiences implementing autism insurance laws in their respective states.

Adam Cole, JD, General Counsel, CA Department of Insurance; and Angela Nelson, Director of Consumer Affairs, and Melissa Palmer, Legislative Director, from the MI Department of Insurance and Jacqueline Eckert, MedClaims Liaison (PA) discussed “Enforcement of Coverage”.

A mock legislative hearing on autism insurance reform, provided an opportunity for attendees to experience first-hand the challenges frequently experienced by advocates.

Insights by the Autism Speaks Government Relations team specific to grassroots development, communications, policy, implementation and enforcement was interspersed throughout the summit.

As all of us headed back home to different parts of the country, colleagues, old and new shared smiles and hugs of encouragement. Once again, the connection of hope and ideas has been sparked and 2012 is destined to be another year of hard-fought progress in the effort to ensure access to autism insurance coverage, family-by-family, plan-by-plan and state-by-state.


Setback is the opportunity to begin again more intelligently

Dear Washington Autism Advocates,

Thanks to your collective efforts we accomplished the following during this session:

  • Representative Cody has agreed to hold worksessions with key legislators on Autism insurance parity in the interim.
  • Senator Keiser has pledged to continue to seek ways to provide more coverage for families involved with autism.
  • Senator Oemig secured a budget proviso that directs Directs DSHS in collaboration with the Department of Health and the Health Care Authority (manages PEBB) to report to the legislature by November 2010 on the costs and savings associated with adding autism spectrum disorder as a mandated coverage benefit.
  • Senator Oemig has further put in measures in place for DSHS/DDD to track funding & services provided to children with ASD’s birth-21 including evidence based treatments.
  • DSHS/DDD is holding focus groups through out Wasington state involving children, adolescents and adults with disabilities that have been in crisis while living in communities.  Of the children in crisis 90% are those with ASD’s.  The focus groups will report back to the secretary of DSHS & the legislature by end of May.
  • last but not least we’ve had 3 Senators and 2 Representatives offer to champion Shayan’s Law next session!

While above steps are key in making a stronger case for Washington to invest in appropriate healthcare for Washingtonians with ASD’s, nothing comes close to  on going & ramped up public demand.

WAA will launch 49 online petitions for each of the 49 legislative districts in WA.  These petitions are intended to demonstrate the magnitude of public support to end autism insurance discrimination.  While our families grappling with day to day challenges of autism are unable to come en mass to  Olympia, we can use technology to keep our message alive throughout the year.

We need  District Captains who are willing to promote these petitions district wide.  Our goal is 1000 electronic signatures per district.  This is a very ambitious goal, but I believe we can reach it!

This is not an issue that will go away, we will need to grapple with it to achieve more equity and fairness within our entire health care system.    Thank you for your ongoing support and actions on this critical issue.

All my best,

Arzu Forough