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."
The best part of my job is meeting amazing autism families all around the country. During my time in North Carolina recently, I have heard so many inspirational stories from all corners of the state, and I want to share them during these last few weeks of the legislative session. Each day, I will share a post written by a North Carolina family who is working to help pass autism insurance reform this year. Some of these families desperately need coverage for their own child; some of them are working solely for the benefit of others. These people inspire me every single day.
Meet the Robinsons
In April 2013, our lives changed forever when our son, Samuel, was diagnosed with autism at the UNC Center for Developmental Disabilities. As parents, our main concern was what we needed to do to help our son. Doctors recommended intense 1:1 Applied Behavior Analysis (ABA therapy) because it is proven to be the most effective treatment. We did our own research and found that, with ABA therapy, almost half of the most severely dysfunctional autistic children can be mainstreamed in to the regular classroom, excel in school, and become productive taxpaying citizens as adults. Unfortunately, the doctors explained to us there were limited resources in North Carolina due to the fact insurance companies deny coverage for autism therapies, despite North Carolina being one of the leading places in the world for autism research.
We enrolled Samuel in an intense 1:1 therapy program at ABC of NC in Winston-Salem, NC. This has required my wife, Bobbie, to take a medical leave from teaching while she and Samuel travel 3 ½ hours from our home in Greenville, NC to Winston-Salem every Sunday so he can receive therapy throughout the week. We held fundraisers and took out loans this year to help cover the cost of treatment, which reached over $60,000. Both sets of Samuel’s grandparents sacrificed portions of their savings, and his grandfather even delayed retirement.
Before Samuel started therapy last August, he did not notice when I walked in the house from work. It was like he was in his own little world. Now, Samuel comes home on weekends and greets me with a big smile, a warm hug, and loud hey! This weekend he kept throwing balls at me and I would then throw them back at him. We kept laughing and playing until he finally fell asleep. A year ago, our little boy would never have picked up a ball at all, much less start a game between him and his daddy.
There are many families who are not able to get their child the help we are getting Samuel due to cost and/or lack of access to therapy in their region of the state. There are other families, like ours, who get their child the therapy he or she needs, but have to stop prematurely because they no longer can afford it.
Our state general assembly has an opportunity to change the lives of thousands of children and their families before the end of the short session. Thirty-seven other states already have autism insurance coverage including our bordering states of Virginia and South Carolina. Last May, families affected by autism in North Carolina had hope as the Autism Insurance Bill passed the House. Senate leadership had concerns about how the bill could affect the Affordable Care Act (ACA). Since last May, Senate leadership has worked with the autism community and now the ACA is a non-issue. All Senate leadership needs to do now is take action by having a vote!
The autism insurance bill would not only help millions of children and their families in North Carolina, but also would promote more business in our state. There would be more therapy centers such as the one Samuel attends because more families would be able to afford it. The licensure of behavior analysts (providers of ABA therapy) would give North Carolinians greater access to care so families are not split apart like ours to get their child the care he or she needs.
The autism insurance bill would also have zero impact on taxpayers and fix the problems military families are having in North Carolina. For over a year, the United States Marine Corps has stopped sending families with autism to North Carolina due to the lack of access to care. Last month, the State Employees’ Health Plan approved the autism insurance benefit for ABA therapy and will begin coverage for state employees beginning January 1st, 2015.
Autism diagnosis has increased significantly during the last 10 years and is more common than childhood cancer, juvenile diabetes, and pediatric AIDS combined. The state has seen a 17 percent increase in autism diagnosis just in the last 2 years. Autism affects one in 58 children in North Carolina which is higher than the national average.
We could not be more proud of Samuel and his accomplishments this past year. Bobbie and I will always remember the countless nights of crying and feeling hopeless on how we were going to help our son. Samuel is a living example of how early intervention and intense therapies can make a difference. We now have hope for our son and his future. The state Senate has a tremendous opportunity to give hope to thousands of children and their families before the end of this short session with the passage of the autism insurance bill. I hope and pray all children affected by autism will have the opportunity to get the treatment they need to live long productive lives as North Carolina citizens.