Sunday, Aug. 6, 2023 | 2 a.m.
When I was 2 years old, my parents thought I would never speak. Two years later, I called out to my “mama” for the first time. Five years after that, at the age of 9, I called on legislators at the Georgia State Capitol to do more to help children like me.
I have autism. If it weren’t for a therapy called Applied Behavior Analysis, I never would have been able to speak, let alone speak up for myself or other children with autism.
Every person with autism deserves access to ABA — a scientifically proven therapy that helps children communicate, socialize and approach daily tasks. Too often, whether because of hurdles set up by an insurance company or the nationwide shortage of qualified providers, it’s difficult for us to get the therapy we need.
ABA is not a one-size-fits-all approach but an individualized plan that aims to meet the specific needs of a child.
Here’s what my plan looked like. I spent 30 minutes working at a desk with my therapist, then we transitioned to the floor for 30 minutes of play. Then we went outside for 30 minutes. This cycle repeated for eight hours, five days a week. I learned to communicate, first with hand gestures, then with language. I learned how to play and socialize without melting down. Most importantly, I had a resource to turn to whenever I felt anxious or overwhelmed.
Securing access to ABA was not easy. In 2006, my pediatrician told my mother that ABA was the “Cadillac version” of treatment for autism. Good luck finding and paying for a provider, especially where I lived in rural Georgia.
Not long after that, our health insurer sent a letter informing us that autism therapy was an “excluded coverage.” They wouldn’t cover any speech therapies or occupational services, let alone ABA.
But my family didn’t give up. My mother found a therapist in South Carolina who came to our small town to work with me. My family was able to raise enough money to cover the cost of care out of pocket. Within just a few weeks, I had learned to communicate rather than cry. I could convey my wants and needs in a way others understood.
Our family’s experience prompted my mother to press the state legislature to make ABA accessible to every child with autism in Georgia. When I was old enough to help, I joined my mother on her trips to Atlanta to lobby for legislation mandating that insurers in Georgia cover ABA.
I remember how devastated I was when our bill didn’t pass. Did these grown men and women not care about me and the thousands of kids in Georgia just like me?
Finally, in 2015, Gov. Nathan Deal signed Ava’s Law, which requires health plans in Georgia to cover ABA and other evidence-based treatments for every child with autism.
I wasn’t the first to fight for equitable access to ABA and other effective autism services. And the fight is far from over. Georgia was the 41st state to enact insurance reform for autism therapies in 2015. And while all 50 states now require insurers to cover autism therapies in varying capacities, barriers to access still remain.
Nevada expanded access to ABA earlier this summer by allowing Medicaid beneficiaries to receive services until age 27, up from 21. But there’s still work to do.
Nevada’s waitlists for an autism diagnosis or treatment are among the longest in the nation. That’s in part because the state requires the behavior technicians who deliver ABA to be certified as Registered Behavior Technicians and then register with the state before they can practice.
And that makes it harder for ABA providers to hire and retain behavior technicians in Nevada. Couple that with the fact that Nevada has some of the lowest reimbursement rates for ABA in the country, and it’s no wonder there aren’t enough ABA providers to meet families’ needs.
Allowing behavior technicians who have completed training and passed a comprehensive background check to work with kids with autism while they wait for the state to process their applications — and paying them more — are crucial steps to expanding access to ABA in Nevada.
When I was diagnosed with autism, the doctor told my mother I’d be in special education my entire life. After just two years of ABA, I joined a mainstream pre-kindergarten classroom with my peers. ABA allowed me to excel in school and eventually graduate in the top 5% of my high school class and head on to college. As I attend class and think about my potential major, I’m grateful that ABA gave me the freedom to chase my dreams and choose my future.
At the end of the day, I can only tell my own story. But I can only tell that story because of ABA.
Ava Bullard is a rising sophomore at the University of Georgia and advocate for people with autism.
