Saturday, May 13, 2017

Local Mom Makes Heartfelt Plea for ABA Coverage for Spectrum Individuals

by Glenni Lorick, IBCLC
This morning I read the following letter that my friend Ashley Sparks wrote to Senator Paul Sanford. Ashley is an amazing woman who eloquently advocates not only for her daughter, Brinley, but for all individuals on the Autism Spectrum. I have known Ashley since before Brinley was born. I remember when she suspected that Brinley might have a problem, and when Brinley received her diagnosis. Ashley, like many other mothers of children on the Autism Spectrum, pours her heart and soul into advocating for her daughter!  

A Bill mandating insurance coverage for the expensive ABA therapy needed by children on the Autism Spectrum passed the House by a unanimous vote. However in the Senate, it was referred to committee. Senator Sanford was only one of two "No" votes in the committee that approved the bill 14-2. My prayer is that this letter touches Senator Sanford's heart and the hearts of other Senators who may happen to see it. Please share it far and wide in the hope that every Alabama state senator will see it and understand how critical the ABA funding really is!  

Senator Sanford,
I would be surprised if you remembered me, but we spoke at length several times during your first campaign. At the time, I had no idea my second child would have an autism diagnosis and would struggle to get through a normal day without sensory overwhelm and, often, violent meltdowns. I just knew you coached my cousin's basketball team, ran a killer barbecue joint, and supported the legalization of midwives. Each time I spoke to you I was encouraged because I felt you were someone I could count on to always do the right thing. Your integrity was what stood out to me, above all else. So I not only voted for you, I campaigned for you. I walked streets and handed out flyers, I advocated for you to anyone who would listen, and I held signs on election day.
I know that often the "right thing" is not always black and white, especially in the murky political world. I understand that you have firm beliefs in small government, and the right of the free market to regulate itself. As such, I can understand why you would balk at a bill mandating private insurance companies to cover any specific therapies.
Brinley in the middle of a meltdown. I wasn't able to touch
her for nearly half an hour while she screamed "Mommy!
Help me!" She could not tolerate being touched due to her
sensory overwhelm, but wanted my help. There is nothing
 more heartbreaking than watching your child suffer
when you are helpless to fix it.

But senator, I do believe that this is one of those times that departure from your political principles is not only reasonable, it is critical. You see, a free market might well regulate itself into including these coverages through competition. There are compelling arguments on both sides of the fence about the feasibility of that actually coming to pass. However, it requires a great deal of something of which we simply don't have the luxury - time.

My daughter, Brinley, is six years old. She has already lost the most critical years for ABA therapy, but if this bill were passed, she could still greatly benefit from therapy. She might one day sit in a regular classroom, at least for part of her day. She might be able to go out to a restaurant without covering her ears and screaming halfway through the meal because of her learned coping skills. She might even, someday, be independent enough to have a job and even a home of her own. But only if her critical supports are provided. As you can see, I can't wait for a free market to sort itself out. Neither can the other 50,000 plus individuals in Alabama with Autism Spectrum Disorders. While we respect that economics must be a considered factor, we must prioritize our children's greatest needs. For Brinley and tens of thousands of others, that need is ABA and the time it is needed is yesterday.

Senator, I am urging you - no, pleading with you - to support this bill. I am begging you to support the removal of the amendment capping the age at 16. Autism is a lifelong condition and while the greatest needs for ABA are in the younger years, the need for access doesn't magically disappear at any given age. A child who required thirty hours of ABA at age six might only require a couple of hours a week at age sixteen, but they may still desperately need that support at a time in their lives when their worlds continue to change rapidly. I am also asking in desperation that you remove the amendment that would limit coverage requirements to plans for fifty or more employees. This would exclude at least half of Alabama families, and severely limit tangible job opportunities for parents of children on the spectrum. It would prevent parents from venturing into small business for themselves, and could easily become a functional cap on the ingenuity and entrepreneurship of Alabamians. Please, sir, don't let that happen.
Brinley with her service-dog-in-training, Max. Moments like this
we get to see our daughter - really see her, and not just her autism.
Moments like this give us hope. ABA therapy would mean far
more moments like this and fewer like the one above.

I voted for you in the confidence that you would always do the right thing. I was so disheartened to hear your votes in committee the other day because it was clear to me that you and I were not on the same page about what the right thing was regarding this bill.

Please look at this sweet girl. Look in the faces of our children who need this therapy to lead lives with meaningful communication and relationships. They need this therapy to lead full lives. I think when you look at them, senator, you will know in your heart that the right thing to do in this situation is not about political philosophy, but about human dignity - and that is passing this bill, preferably free of the amendments.
Thank you for your time. You have my faith to do the right thing.
Ashley Sparks

1 comment:

  1. Thank you so much for sharing this, Glenni. I love your sweet advocate's heart!