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It Started Over a Pizza...

This post is by Judith Ursitti, Autism Speaks' director of state government relations.

We hold these truths to be self-evident: that all men are created equal, that they are endowed by their Creator with certain inalienable rights, among these are life, liberty, and the pursuit of happiness, that to secure these rights governments are instituted among men.
Thomas Jefferson, 1776

These timeless words, shared poignantly by Michigan Lieutenant Governor Brian Calley, set the tone for the 2012 Autism Speaks Law Summit held last weekend in Washington DC.  More than 100 parent-advocates, self-advocates, attorneys, legislators, regulators and other professionals from more than 30 states, filled Lerner Hall at George Washington University Law School to learn more about working together to effectively draft, pass, implement and enforce meaningful autism insurance reform on the state and federal level.

The Summit, much like the effort to bring about change in the healthcare arena for people diagnosed with autism itself, started several years ago as a small affair. A handful of advocates brought together by Autism Speaks’ now vice president of government relations, Lorri Unumb, gathered in a conference room, passing the hat for pizza money and sharing a vision that would prove to be unstoppable.  At the time, only three states (Indiana, South Carolina and Texas) had passed meaningful autism insurance reform. That would quickly change as advocates, armed with knowledge and a shared mission, returned to their respective states and got to work. 

Fast forward to today, and 32 states now require health plans to cover meaningful autism treatment. This includes screening and diagnosis as well as interventions for people on all parts of the spectrum – specifically, behavioral health treatments like applied behavior analysis, psychological services, psychiatric services and therapeutic services like speech, occupational and physical therapies.

This incredible evolution has occurred simultaneously with the growth the Autism Law Summit. In the early days, passage of legislation was the primary focus of the gathering. Now the implementation and enforcement of the existing laws have achieved equal focus on the agenda. 

Highlights of the Summit included:

• Introduction of Autism Speaks’ new Self-Funded/ERISA toolkit, which can be found here, and a panel discussion made up of advocates who have successfully secured coverage by self-insured employers
• A presentation by R.J. Paczkowski of Capital One on their experience providing an autism benefit to their employees
• An overview of resources available through Autism Speaks Family Services, including the Autism Response Teams, presented by Peter Bell, executive vice president for programs & services
• A compelling presentation providing the perspective of a self advocate on autism insurance reform by John Elder Robison
• The introduction of new practice guidelines  developed by the Behavior Analyst Certification Board
• A mock legislative hearing
• Informative presentations on topics ranging from evidence-based treatments, to reimbursement strategies
• A presentation by Shelley Hendrix, Autism Speaks director of grassroots development, on the newly forming Autism Congress 
• Updates on federal efforts by Autism Speaks senior policy advisor and counsel, Stuart Spielman and military efforts by Autism Speaks director of military relations, Karen Driscoll
• A rich discussion on litigation to secure insurance coverage for autism which included presentations by attorneys Dan Unumb, Miriam Harmatz, David Honigman and Sonja Kerr
• 2012 awards presented to advocates and stakeholder groups  (Read more about them here.)

Once again, those who attended the Summit left with increased knowledge, inspiration and an undeniable connection to others with the shared vision of life, liberty and the pursuit of happiness for those we love who have been diagnosed with autism.  

If you are interested in participating in next year’s summit, please contact us at

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.