Georgia Can Do Better than Ava’s Law / Ava’s Law – Creating Options Where None Have Existed
The following are the Perspective articles offering differing opinons of Ava's Law from the Summer 2013 Making a Difference magazine. Click here to read the entire magazine.
Georgia Can Do Better than Ava's Law
By R. Larkin Taylor-Parker
I look like a typical 20-something in Atlanta. I attend college, work and volunteer. Unlike most of my peers, I am autistic. My wonderfully ordinary life comes with a twinge of something like survivor guilt. Most people with labels like mine lack the independence, agency and physical and psychological security that I almost take for granted.
In my opinion, the proposed insurance legislation named Ava's Law, would not improve matters in Georgia. My main concern is that it incentivizes the use of Applied Behavior Analysis (ABA), which is a controversial practice. There is research suggesting it "helps" a number of autistic children, but the extent varies. I wonder what "helping" means. Are the "improved" children better at skills that will free them to pursue dreams and goals of their own, or are they reaching arbitrary benchmarks like making eye contact? Training children to make a constant effort to look normal may distract, exhaust and further impair them. Done in this spirit, "help" accomplishes more harm than good. To an extent, that is true of all therapies that insurance companies would cover if the bill passed. More widely implemented, these autism therapies would be a complex patchwork of good and bad.
However, ABA is a special problem. It is notorious. I never had this therapy, but those who did tell me I am lucky. In the autistic community, childhood memories of ABA go hand-in-hand with Post-Traumatic Stress Disorder. Breaking down children, rebuilding them in the image of what some of us wish they were tends to damage them. There are people in the autistic community who believe that ABA is always wrong. They have never fully convinced me. I agree that using ABA and aversive, pain infliction to change behavior is immoral. Acts difficult to distinguish from torture usually are. That being said, someone, somewhere is probably using ABA well and for the right reasons. Unfortunately, its best iterations are not its most common. Making insurers cover ABA would most likely incentivize it, increase demand for it and cause more cases to spring up quickly. Nothing is at its best when rushed.
The passage of this bill would create an environment conducive to the expansion of a risky practice's least thoughtful forms. The autism world is nuanced, contentious and brimming with wrong-headed good intentions, lousy with quacks. We need to be cautious. Georgia could do more to help autistic people, but Ava's Law is not the answer. We will only find a real solution through discussion that includes autistic voices, uses empirical evidence and prioritizes need within the State over organizations' national policy agendas. Autism Speaks, almost universally opposed by autistic adults, is entangled with this to some
not-fully-knowable degree. Autism Speaks moves under a cloud of perpetual controversy and its own hyperbolic rhetoric. Its presence is bad for clear-headed, rational discourse. I believe Georgia can do better than Ava's Law.
R. Larkin Taylor-Parker's Bio:
R. Larkin Taylor-Parker is a student at Agnes Scott College and an occasional blogger who writes on topics related to autism. To read her blog, visit http://iamthethunder.tumblr.com/.
Ava's Law – Creating Options Where None Have Existed
By Teri R. Williams and Anna Bullard
At two-years-old my granddaughter, Ava, had never said mama or daddy. We told ourselves Einstein was a late talker too. But other behaviors couldn't be so easily dismissed. Ava cried when we sang to her. She never played with toys. She rarely gave eye contact and never responded to her name. By the time she was two and a half, we knew she was quickly slipping away from us into a world of her own. On November 6, 2006, a specialist diagnosed Ava with autism.
Ava was covered under her father's state insurance for schoolteachers. The insurance company immediately dropped Ava's coverage of speech therapy after the diagnosis. We were told that no therapy for autism was covered. If a person is diagnosed with cancer and there is the prospect of recovery with medical treatment, isn't treatment covered by insurance? There are documented studies that proved evidence-based therapy could produce significant improvement for at least 50% of children with autism who received it. And, almost all showed some measure of improvement.
Anna, Ava's mother, contacted a Board Certified Behavior Analyst (BCBA). The BCBA provided an individualized program for Ava and for two years she received intense Applied Behavior Analysis (ABA) therapy for 30 to 40 hours per week. The cost alone would have ruined most young families' finances, but Ava had the advantage of help from family that many simply do not have.
At the age of four, Ava entered pre-k in a regular classroom. Her improvement was mind blowing.
This year Ava tested into the program for advanced students. She also received an award for the highest score on the math section of the CRCT in her grade.
In 2009 Anna was asked to share Ava's story before a state insurance committee. A bill had been proposed that would require insurance to cover evidence-based therapy for autism. Georgia was one of only 18 states that had not already passed a similar bill. After hearing Ava's story, proponents decided to name the bill Ava's Law.
Some say autism is an issue for the educational system, but the educational system cannot treat a medical condition. More importantly, by the time a child is old enough for school, the most critical time for early intervention has passed.
If Ava's Law is passed, children with autism will be able to receive insurance coverage for evidence-based medical care according to individual needs. The state insurance committee has been presented with documentation that proves Ava's Law will save the State millions of dollars that will otherwise have to be paid for services for those who will become dependent on the State, rather than independent contributors to society. Although insurance companies cite concerns that the mandate would cause premiums to increase, evidence from other states proves the increase is only a few cents a month.
Ava's Law provides options for individuals on the autism spectrum where none have existed before.
Teri R. Williams and Anna Bullard's Bios:
Aana Bullard is the mother of Ava, for whom Ava's Law is named and Teri R. Williams is the grandmother.
