On the Road: “Please don’t forget about us.”

Friday, October 18, 2013 View Comments

Lorri Unumb, vice president of state government affairs for Autism Speaks, travels the country advocating for families and individuals facing the challenges of autism. This is her ongoing series "On The Road For Autism Reform."

I have definitely been On the Road for Autism Insurance Reform this week, or more specifically, over the ocean!  This week, I met with legislators, families, and a variety of autism stakeholders at the Hawaii State Capitol. Autism families in Hawaii tell me that they often feel isolated, and they are so grateful to Autism Speaks for sending representatives across the ocean to help them in their quest for insurance coverage. More than one mom has sent thanks and asked me to remind the mainlandlers that Hawaii children suffer from autism, too, and they need our help just like everyone one.

Kudos to Hawaii State Representative Della Belatti and State Senator Josh Green for assembling a group of 20 or so stakeholders to discuss strategy for enactment of autism insurance legislation in 2014. In addition to Autism Speaks, stakeholders at the table included autism families, the Autism Society of Hawaii, the Council on Developmental Disabilities, Hawaii Disability Rights, Easter Seals, and others. I also met with representatives of the Hawaii Association of Behavior Analysts (HABA) and Autism Behavior Consulting; many of the ABA providers in Hawaii have offered incredible support and assistance in our efforts to pass legislation in their state.

Back on the other side of the country, I received a heartwarming note from another incredibly supportive ABA provider. I spent a great deal of time over the summer working in the North Carolina Legislature, and one of our extraordinary volunteers there is a BCBA named Apple Boyce. Apple serves a significant number of military families in her ABA practice, Priorities ABA, and she also makes time to serve as Autism Speaks Advocacy Chair for North Carolina. She is exceptionally giving of her time in her effort to ensure access to care for more families. Imagine my surprise when I learned of the following note to Autism Speaks President Liz Feld from Apple and her husband Russell:

We would like to thank Autism Speaks for helping the autism community in so many ways. In particular, the ongoing work Autism Speaks is doing on the legislative front is critical to help children gain access to the services they so badly need. As an ABA therapy provider in a state that does not yet require insurance companies to cover ABA therapy, we see and hear firsthand the problems families face when they are unable to afford the services their child needs.

We are extremely grateful for the amazing work of the Autism Speaks staff, especially that of Lorri Unumb and Karen Driscoll. Mrs. Unumb's efforts to pass and improve insurance coverage for children with Autism Spectrum Disorders nationwide are helping thousands of families. Mrs. Driscoll's work on behalf of all of the military families who have a child with an ASD has been instrumental in improving coverage and access to care. Over the past couple of years, we have had the privilege of working with both Mrs. Unumb and Mrs. Driscoll to address the need of children with ASD's here in North Carolina. Their dedication and tireless efforts to help are an inspiration, and a major driving force behind this donation.

In support of the work of Autism Speaks, we have enclosed a $10,000 donation to be designated for Autism Speaks' advocacy and legislative efforts.

Apple, Russell, and Priorities ABA -- Thank YOU for your incredible generosity. Those of us who work in government affairs at Autism Speaks are humbled to be able to advocate on behalf of the community, and we could not continue without the support of folks like you. And to all of the providers, parents, and others who have generously donated financial resources or given of your precious time, we thank you. We recognize that every time you show up for a legislative meeting or hearing, you are taking time away from your jobs and your families. Our hats are off to all of our remarkable donors and volunteers. Together, we will make the world better for everyone who struggles with autism.

Previous Slide 1/3 Next Lorri talks with Rep. Della Belatti, Chair of the House Committee on Health, and Mihoko Ito of Honolulu With Amanda Kelley (aka “BehaviorBabe”) and Anne Lau of the Hawaii Association of Behavior Analysts  Lorri and Autism Speaks North Carolina Advocacy Chair Apple Boyce in Wilmington in February