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 Pearces
One in 68. One in 42. My three-year-old son Charlie is that one in every 68 children who has been diagnosed with autism. He also is one of those every 42 boys who has been diagnosed with autism.
Charlie was diagnosed on the autism spectrum at age 20 months when his pediatrician noted that his development was behind in several areas. Since being diagnosed in September of 2012, Charlie has been in various kinds of therapy, including food and eating therapy (which is what it sounds like; it is teaching Charlie to eat regularly since his sensory issues prevent him from even trying to put most kinds of food in his mouth). Since starting these doctor-prescribed therapies, we have seen a huge impact in Charlie’s developmental growth across the board. We are thrilled with how successful the therapies have been so far. Indeed, the teachers at Charlie’s preschool have remarked how much he has blossomed since starting treatment. Unfortunately, therapy does not come at a small cost. Luckily, we are in a position where we can afford to give Charlie what he needs, but it takes a bite out of our budget. We recognize that all families in North Carolina dealing with these same issues are not as fortunate financially as we are. As a result, we know that some families have to make the choice not to put their children in these therapies because they simply cannot afford it because their health insurance plans have not covered the therapies. This is a problem that needs to be addressed, and the pending autism insurance bill will do that.
Upon learning of Charlie’s diagnosis, I contacted my law firm’s HR department to see if the therapy Charlie needed was covered. The answer that I received was that it was unfortunately not covered. I am proud to say that at my urging, my law firm, Nexsen Pruet, investigated the issue and has voluntarily added coverage that is compliant with the autism coverage law in South Carolina (our firm is in South Carolina and North Carolina). My firm did not have to add this coverage because we are self-insured and thus fall under federal law rather than state law. However, my firm recognized the importance of the coverage and provided it. I am very proud of that fact, and I think it reflects the importance of the issue. I truly believe the only reason I got this done was because a law was in place in South Carolina. Once this bill is passed in North Carolina, more of our corporate citizens who are similarly self-insured will follow my firm's lead. I have no doubt. Enactment of the autism insurance legislation will make this change happen.
Autism should not be a partisan issue. When the autism insurance bill was introduced, it was introduced by Republicans and a Democrat and many more Republicans and Democrats signed on as co-sponsors. I see no need for this bill to take anything other than a bi-partisan approach that will help it move through the short session to passage quickly.
We can say from a personal perspective that this therapy works. Our son is living proof of that. The therapy needs to be available to all North Carolinians. The autism insurance bill will make that happen. You can make that happen. We ask you do that not only for our son, but for other similar children and families.