Mary H. is a mother of three boys living with her family in Georgia. Her middle son, Jack, was diagnosed with autism at age three. Despite getting Jack into an early intervention program, the wait list for behavior therapy — as for most families in Georgia and across the country — stretched to more than a year. With his behavior impeding his speech and occupational therapy, the family had run out of options.

Unfortunately, Mary’s story is all too familiar for the millions of Americans living with autism today. For many, even if they can get through a months-long waitlist, the nearest therapy center might be miles or hours away and then only open between 9am and 5pm — an impossibility for working families. They are all too familiar with the repercussions of our country’s losing battle with autism. 

With one in every 36 children being diagnosed with autism, it is the fastest growing developmental disability in the United States. While there is much discussion about the cause of this unwelcome explosion, the often ignored takeaway is that it has caught the healthcare industry flat footed and families and children are stuck looking for support. 

An urgent shortage of clinicians to both diagnose autism and deliver applied behavior analysis (ABA) therapy — what some insurers call the “evidence-based gold standard for treatment” — as well as payor uncertainty about how to administer payments for treatment have all resulted in a logjam for access and treatment. And right now, the industry profiting most from this logjam is the same one that is responsible for perpetuating it: private equity. 

Inspired by the combination of an urgent need, limited resources, and a chokepoint for diagnosis, private equity has become the dominant player in autism services, having completed 85% of the mergers and acquisitions in the space between 2017 and 2022 — the highest rate in any segment. As evidenced by a scathing new Senate report on private equity’s role in healthcare overall, we know this is an unhealthy equilibrium that seems to be tipping increasingly in the wrong direction. There is no incentive for these investors to dilute their product by making therapy easier and cheaper to obtain for millions more Americans. 

Instead, by limiting access to therapy and then staffing centers with minimally trained, usually high school graduate level Registered Behavior Technicians (RBTs), they are locking families into dozens of hours or days of weekly therapy just to eke out de minimis results. Highly trained supervisors are burning out and leaving their jobs in droves. And a standardized treatment model designed by investors to handle large volumes of cases is poorly suited for the individualized needs of autism patients. The fallout has been obvious. An Eastern Michigan University study found that more than 75% of families with autism are waiting five months or longer for their first service, while our own studies show more than 50% of patients wait more than nine months. This lack of support and access is even more pronounced in poor and underserved communities. 

We cannot simply accept this status quo and leave an entire generation of children unsupported when more viable options are available. The good news is that the needle is moving. New ABA models are actively proving that virtual therapy can be just as effective — if not more efficient — than traditional, in-person therapy. What took months to achieve in-person can be done in much less time and with overwhelming levels of patient and family satisfaction. Even better, this virtual ABA therapy is accessible no matter where a family lives and can be made available off-hours to work around busy lives and schedules. Families are expressing delight with the results and payors are showing they are open to these new models. 

Yet, like anything new, it remains constrained by outdated marketplace requirements and skeptical industry reactions. And the overreliance on RBTs and in-person options is only perpetuating private equity’s grip on America’s autism patients. The fastest way to reverse this and meaningfully address autism in this country is for regulators, insurers and providers to come together and unleash the full potential of virtual ABA to support the growing demand for its benefits. 

The first step is for regulators to step in and help streamline current state-by-state licensing requirements that inhibit growth and limit patient impact. Payors can also help by identifying best practice value-based care contracts to serve as industry models. And of course, it’s incumbent upon innovators to help traditional providers understand the value of telehealth services and how the two can work together on behalf of patients. 

Fortunately for Mary, virtual ABA therapy available in her state was able to get Jack the help he needs. Making those same options available to every family with autism should be our goal. By working together, industry and policymakers can make effective, high-quality virtual therapy accessible for everyone, regardless of their financial resources or where they live. It’s within our grasp to turn the tide on America’s autism crisis.

Shared with permission, the mother and son featured in this piece are AnswersNow patients. Names were changed to protect privacy.

Photo: claudenakagawa, Getty Images

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