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 Davises
I'm so excited that our state may very well follow the lead of the 37 states that have already enacted a law requiring health plans to provide coverage for diagnostic and treatment services for autism spectrum disorders.
This bill is extremely close to my heart as my eight-year-old son, Thatcher, has autism. He was diagnosed a few months after he turned two years old. The first 15 months of his life were perfect, and he met all of his milestones. We had no clue how autism was going to rock our world to its very core and change every dream we had planned for our family. Like a thief in the night, autism came and kidnapped the son I had and left a child I no longer knew and could not seem to reach. He lost the sparkle in his eyes and seemed to live in a fog. By 18 months old, my baby had lost all his words, would not play with toys nor interact with his family any more.
My husband and I are both college educated and work hard to provide for our family. We assumed when we received his diagnosis that autism would be covered under our insurance plan just as if he had been diagnosed with diabetes or any other major health issue. I was shocked when I found out that our insurance would not cover the therapy that has proven to help children with autism.
As I researched the cost, I soon realized that there was no way our family could come even close to providing my son with the very thing that could change his life. I will never forget the day I walked out of ABC of NC Development Center in Winston-Salem (which provides services such as those that would be provided through the autism insurance bill), knowing that they had the ability to help my son but that we could not financially give it to him. I sobbed as I sat in my car wondering how I would explain to him one day that I had found a place that could help pull us out of the autism ocean we were drowning in, but I walked away. I left that day and decided I would fundraise my life away to get him services from ABC of NC. And that's just what we did! Spaghetti fundraisers, silent auctions, golf tournaments, Christmas tree fundraisers, t-shirt fundraisers and the list goes on. Our extended families also rallied around us and gave us all they could financially.
Our son did receive services from ABC of NC for four years, and I can tell you that the services he received there have radically changed our lives forever. When my son entered into ABC of NC, he had NO WORDS and no longer interacted with any of our family. When he was hurt, I never knew. When he had an ear infection, I would only figure it out after his eardrum would rupture from the infection. However, after receiving evidence-based therapies, my son can tell me exactly what he wants, when he wants it, and how he wants it! He can touch his ear and say “boo-boo” when it’s hurting, ask his brother to “jump trampoline with me,” and most amazingly, he can say, “Mommy, I love you”! After 4 years we had tapped out all of our resources and could no longer send him to ABC of NC. I know that if we had insurance that covered ABA therapy, he would be even further along in his autism journey. My son lives in a world that doesn't understand him and in a world that he doesn't understand; yet with the therapy, we can begin to bridge our worlds together! Our family will never be what I dreamed when I was pregnant with Thatcher, but after seeing the results of his therapy, we have begun to dream new dreams.
All families should have this opportunity. I don't want a hand-out. I believe that everyone should work hard for what they need and want, but I also believe that insurance companies should no longer be able to overlook us and say that these kids' lives aren't of value. If we want these kids to grow up and be contributing members to our society, we MUST help them receive the treatment they so desperately need. I hope the General Assembly will pass this bill for Thatcher and children like him because their lives are valuable, too! I'm so hopeful that North Carolina can pull together and support this legislation. Together we can start changing the lives of the children of North Carolina, ensuring a better and brighter future for our great state!
Amy Robertson Davis