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.


Shayan’s Law Update

Full Mental Health Parity passed in Washington state in 2005.  It was phased in over 5 years and all state regulated plans renewing after 7/1/2010 are legally obligated to  cover medically necessary treatments for individuals with a DSM diagnosis for life, with the same dollar cap as medical & surgical benefits. WA MHP is only applicable to plans regulated by WA state laws, fully funded plans and Public Employees Benefits.

Shayan’s Law was brought forward because insurance companies have not been following the letter and spirit of this law for individuals with autism.  This has prompted legal experts to look into this very closely.  Based on the information available to us:

  1. Diagnosis and treatment should be covered if referrals (prescribed testing and treatment) came from a licensed physician or licensed psychologist.
  2. Treatment should be provided by a licensed therapist.
  3. Unlicensed providers (i.e. nationally certified behavior specialists and behavior therapy assistants) must become licensed through Washington State department of health.

Navigating this system can be difficult, for help with the process visit:

We are awaiting the outcome of court cases testing Mental Health Parity and depending on the outcome have to be prepared to block any action that will limit protection under Mental Health Parity for those with autism.   If you have any questions, concerns or comments, please post to the link above.

All my best,

Arzu Forough

Shayan’s Law-Autism Insurance Parity-Hearing update

Many thanks to all the families and advocates who packed the hearing room yesterday, dressed in red and carrying pictures of their children or accompanied with their children.

Our hearing was well orchastrated.   Lorri Unumb(Autism Speaks Senior Policy Advisor), Dr’s Bryan King and Gary Stobbe (Seattle Children’s Hospital Autism Center), Kathy George (Harrison, Benis & Spence attorney), Arzu Forough (Washington Autism Alliance & Advocacy) and Chanel Krueger (highly accomplished, articulate young lady with autism) were among those who provided testimony is support of Shayan’s Law, Autism Insurance Parity (AIP). (The hearing can be viewed through TVW archives by clicking here).

The fiscal calculations on the state of WA to cover the public employee’s dependents  was grossly inflated ($141,773,139), so much so that several committee members requested a revised fiscal data from the office of Financial Management (OFM).

The Senate committee members were clearly in favor of Shayan’s Law.  Our next steps is two fold,  provide true cost impact  data from states that have had AIP for over a decade AND to continue to build the momentum of support.

Here’s How YOU Can Help:

1.Call and write all members of the committee (click on text for contact info.) and let them know Washington state can’t afford to bear the cost of autism alone, let them know how much your family (and/or local school district) ia spending on your loved one with autism(on specialized developmental, behavioral and education programs).

2. Multiply your efforts, forward this note to teachers, therapists, friends, any and all supporters and ask them to please get actively involved.

3.Volunteer with us (click here to view volunteering opportunities)

Thank you for your consideration.

Washington Autism Alliance and Advocacy Coalition

To receive updates about Shayan’s Law please register:


To post questions, comments, inquiries visit:

Autism Legislative Work session very promising! Please thank members…

The House Human Services Committee examined the current strategies and best practices for diagnosis, availability and  attainability of services for persons with autism on June 16th.

It was very clear that the members of the committee had heard from their constituents on the overwhelming unmet needs of your loved ones with autism.

Chairwoman Dickerson requested specific recommendations from the Department of Health member on the panel, who informed them none would be forthcoming.  The paenl and Chairwoman Dickerson shared their disappointment with the Department of Health attorneys present for their lack of direction to the legislature on the legislative actions needed.

In attendance, Sue Elliott, Executive Director of the ARC of Washington, pledged her strong support to work with the Autism community towards addressing top priorities and needs in the 2011 legislative session.

Please see contact information for the committee members in attendance as well as contact information for Sue Elliott, Executive Director of the ARC of Washington.  Please take a couple of minutes to write to the Representatives as well as Ms. Elliott for thier interest in helping prepare WA to face autism more effectively.

Committee Members in attendance:

Representative e-mail Phone
Dickerson, Mary Lou (D) Chair – 36th (206) 545-6513
Orwall, Tina (D) Vice Chair – 33rd (206) 824-5097
Darneille, Jeannie (D) – 27th Representative Jeannie Darneille (360) 786-7974
Green, Tami (D) – 28th (253) 534-3231
Herrera, Jaime (R) – 18th (very briefly) (360) 687-0489
O’Brien, Al (D) – 1st (360) 786-7928
Sue Elliott, Executive Director ARC of Washington

Thank you very much for your continued support.

With regards,

Arzu Forough

Washington Autism Advocacy Coalition