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." Read more North Carolina stories here.
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 Brewer Family
August 2012, I will never forget the empty gut feeling I had as I sat listening to the pediatrician say “I’m sorry, Jackson has autism.” While I zoned out for a few seconds to the white noise of shock, my husband chimed in to ask what we can do. That’s when my brain came back online. Do something; yes there must be something we can do. I’m a planner, I plan to plan. Give me something to do to make this better.
I sat at attention to hear what we could do. “Well, you need to get speech therapy, occupation therapy and ABA therapy right away, and I will send in those referrals today.”
Ok, we can do that, I knew what speech and occupational therapy were, but what was ABA we asked. Our pediatrician explained that ABA was the medical standard for children diagnosed with autism that helped them deal with social and emotional issues as well as speech delays. It is tailored to the child and adjusted based on the child’s response. ABA is a child’s best chance at entering into a typical school if services are rendered early enough. Our doctor then had a grimace on his face so I asked what was wrong and he went on to say that while we were lucky to live in a city with an ABA treatment center; it wasn’t covered under our insurance. In fact, it isn’t covered under any insurance in North Carolina.
As with many previous families, we went through the grueling realization that it didn’t matter if we had to eat Ramen noodles every night, we would do whatever it took to provide our son with the best care possible, but we didn’t expect it to cost close to $3,500 a month. I am ashamed to say we went with strict speech and occupational therapy in a school setting and paid an ABA therapist 60 dollars an hour once a week to see Jackson in our home. It was cheaper and it couldn’t be that much different, right? The excuses were limitless. For almost a year we did this and nothing really changed. In August 2013 we said enough; he had to get ABA the way the pediatrician recommended: 4 hours daily 5 days a week, with his other therapies.
Jackson has now been receiving his medically necessary ABA therapy for just under a year at ABC of NC Child Development Center in Winston Salem. He has blossomed from a boy who sat in the floor and flipped cards for hours, who made no eye contact, who did not hug or speak, into a boy full of smiles and hugs, saying mommy and daddy, running and playing. He will now look us in the eyes and even give us kisses. Our son asks for games and food (with both verbal approximations and sign language), he feeds himself, and at almost 4 years old we are starting to sit on the potty. These are all tasks that were impossible prior to ABA therapy. While we have gains, Jackson still needs at least 20 hours of therapy a week.
SB493 needs to be passed. Children shouldn’t have to go without medically prescribed, proven, effective treatment for any medical condition. All of our children deserve their best chance, let’s give it to them.
Brent and Allison Brewer