Wall Street is profiting from the autism crisis in the United States
Mary H. is the mother of three boys living in Georgia with her family. Her middle son Jack was diagnosed with autism at the age of three. Despite Jack’s entry into the early intervention program, the waiting list for behavioral therapy (for most families in Georgia and the nation) has been extended for more than a year. Because his behavior hindered his speech and occupational therapy, the family ran out of choice.
Unfortunately, Mary's story is too familiar to millions of Americans with autism today. For many, even if they can pass a month-long waitlist, the nearest treatment center can be miles or hours away and then only open between 9 a.m. and 5 p.m., which is impossible for working families. They are very familiar with the impact of our country’s failed struggle against autism.
Every 36 children are diagnosed with autism, the fastest growing developmental disorder in the United States. While there is much discussion about the cause of this unpopular explosion, the often overlooked takeaway is that it has seized the footsteps of the healthcare industry, with families and children stranded in search of support.
The emergency lack of clinicians is neither unable to diagnose autism and provide Applied Behavior Analysis (ABA) therapies (some insurance companies call “evidence-based treatment gold standards”) and payer uncertainty about how treatment payments are managed, all of which lead to access and treatment log JAM. Currently, the industry that makes the most profit from this logjam is the same as the one responsible for ongoing: private equity.
Inspired by urgent need, limited resources and diagnostic barriers, private equity has become a major player in autism services, with 85% mergers and acquisitions completed between 2017 and 2022, the highest in any segment. As evidenced by a harsh Senate report on the role of private equity in health care in general, we know it is an unhealthy balance that seems to be leaning in the wrong direction. These investors have no motivation to dilute their products by making it easier and cheaper to get treatments for millions of Americans.
Instead, by limiting the chances of receiving treatment and then using a staffing center with minimally trained (typically a registered behavioral technician (RBT) for high school graduates), they lock families in dozens of hours or weekly treatment to show minimal outcomes. The trained supervisor is burning down and leaving the work in the struggle. Standardized treatment models designed by investors to handle large numbers of cases are well suited to the personalized needs of patients with autism. The radiation is obvious. A study in Eastern Michigan found that more than 75% of autistic families waited five months or more to get their first service, while our own study shows that more than 50% of patients waited more than nine months. Lack of support and access is more evident in poor and underserved communities.
When there are more viable options, we cannot simply accept this status quo and keep the entire generation of children unsupported. The good news is that the needle is moving. New ABA models are actively demonstrating that virtual therapy can be just as effective (or even more effective) than traditional in-person therapy. In less time, it takes several months to achieve face-to-face, and the levels of patient and family satisfaction are overwhelming. Even better, this virtual ABA therapy can be used to work on busy life and schedules wherever your family lives. The family expressed delight at the results, and the payer indicated that they were open to these new models.
Yet, like anything new, it is still limited by outdated market demand and skeptical reactions. Moreover, the over-reliance on RBT and face-to-face choice only sustains the control of private equity on autistic people in the United States. The fastest way to reverse this and meaningfully address autism in the country is to bring together regulators, insurers and providers and unleash the full potential of a virtual ABA to support the growing demand for its interests.
The first step is that regulators step in and help streamline current state-by-state licensing requirements to curb growth and limit patient impact. Payers can also help with care contracts that determine the value of best practices. Of course, it is the responsibility of innovators to help traditional providers understand the value of telehealth services and how both work together on behalf of patients.
Fortunately for Mary, the virtual ABA treatment available in her state can provide Jack with the help he needs. Providing the same choice for every autistic family should be our goal. By working together, industries and policy makers can make use of effective high-quality virtual therapies for everyone, regardless of their financial resources or where they live. It is our grasp to reverse the trend of the autism crisis in the United States.
Shared with permission, the mother and son in this work are the answer patients. The name has been changed to protect privacy.
Photo: Claudenakagawa, Getty Images
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