GUEST VIEW: Autistic children need help now

By Dr. Hanna Rue

Autism is more prevalent than ever, according to data recently published by the Centers for Disease Control and Prevention. Yet, it’s growing harder for children with autism to access the mental health care they need.

Fifteen million Americans could lose Medicaid now that the COVID-19 public health emergency has ended, including many children with autism who have come to rely on Medicaid for care.

State leaders must do everything they can to make sure that kids with autism continue to have access to the care they need.

There is no cure for autism, but certain therapies can help children with autism communicate, socialize, and improve their quality of life. Those therapies are the heart of Applied Behavior Analysis (ABA), the gold-standard therapy for autism. I work with kids with autism as a Board Certified Behavior Analyst (BCBA). I’ve witnessed ABA help nonverbal children talk for the first time. I’ve seen children learn how to express their frustration and communicate their joy because of ABA.

But there aren’t enough of us to meet the growing demand for ABA.

Between 2010 and 2020, demand for ABA services grew over 4,000%. Yet in 2021, more than half of all counties in the United States didn’t have a single BCBA. Some 300 of those counties don’t even border a county that has a BCBA.

Because of this shortage of providers, those of us in the field are stretched thin. The average workday for a BCBA is 12 hours. Long hours contribute to burnout. Turnover rates exceed 30% annually.

But it’s not just providers who struggle. For children who lose coverage or change providers, lengthy waitlists make finding a new BCBA difficult. Wait times for care can be weeks, months, or years, depending on where a family lives. If a child is forced to pause ABA therapy, the result can be months of lost progress — or even a regression in behavior.

Commercial insurers, meanwhile, are erecting barriers between kids and mental and behavioral health services. When children lose access to ABA, they are at risk for losing skills they may never regain, jeopardizing their best chance to become independent adults.

State leaders must ensure that insurers don’t arbitrarily limit coverage of ABA by creating improper guidelines, restricting beneficiaries to narrow provider networks, or imposing administrative burdens on providers who should be focused on patients.

If insurers limit how many hours or days of ABA therapy are reimbursable, families will struggle to get the care their children need.

Many of those at risk of losing coverage for ABA routinely face inequity in our healthcare system. State leaders must ensure that the end of continuous Medicaid coverage does not also mark the end of robust access to effective mental health care for tens of thousands of kids with autism.

Dr. Hanna Rue is chief clinical officer at LEARN Behavioral, and holds a Ph.D. in clinical psychology, and is a Board Certified Behavior Analyst.