Paying Better For Autism Care
All the attention to applied behavioral analysis has created a question in healthcare policy and investment circles around what ought to be the right level of hours per week per child to treat autism - only thing is, that isn't the right question to be asking…
…It's really how can we a create a system that prevents the ping pong families feel in trying to get answers and peace, trains a clinical team in treating all of the kid’s related conditions and symptoms, measures where the system breaks down, finds ways to intervene before it does, and removes the usual limitations of fee for service reimbursement that make it hard to contain cost for a growing benefit.
The challenge is clear - costs are rising and the system is in a knot, unable to keep paying for all the care, at least at this level. Schools are often left to deal with the day to day. In one junior high in Connecticut, 25 of 80 children in one teacher’s math classes are on the spectrum. She remains calm and represents each child best she can, but resources can be limited despite a growing number of centers across the US offering autism therapy.
Insurers are often blamed for pushing back on companies offering applied behavioral analysis or ABA therapy for children. Some have started to say that the hours each week aren’t justified, at least not at such high levels and especially not if the child isn’t making progress.
No one is crying over health insurers, but in their defense, coverage mandates, a complicated path to diagnosis and no clear end point have probably held back innovation in both paying for the care, and getting a good result at sustainable costs that helps family, school, child and those managing the books.
In 2016, health insurers and employers needed an autism therapy network as policy changes forced many insurers to start covering care, and the autism therapy providers needed a simple way to bring patients to them. These ABA centers grew and now, like health insurers did 20 years ago with MRI and pain management, insurers are starting to put resources into limiting reimbursement when they can.
Alliance Health, a specialized insurance plan for Medicaid beneficiaries in North Carolina, says it expects the average number of ABA hours there to decline as it pushes people to use a multidisciplinary alternative from the business Cortica. The contract will pay Cortica a higher fee for more holistic services - think pediatric developmental therapy and guidance for all the child’s medical and behavioral health needs. The higher fee structure comes with a string - it’s contingent on Cortica’s team hitting performance goals. This is not the company’s first rodeo, they’ve done this work in other states and in partnership with other insurers with good success and they believe there is potential for a time very soon when they can even have total financial responsibility for the care and cost of these kids.
"We're marching toward that," an optimistic CEO Neil Hattangadi, MD, told me last night from his California office. This isn’t a new thought of his. The Boston-area trained physician has long said it’s important to let a business do its job without constraints around what each day will pay them, particularly when you’re dealing with a complicated patient population like autism and neurodevelopmental challenges.
This reminds me of the early days of substance use disorder treatment companies who took financial risk for relapse and all of the patient's primary care, including the cost of hospital care. Insurers like United Healthcare and Anthem listened.
But building the clinical and social services team takes time, and executing on it is not easy. These are kids, families, difficult to predict behaviors, and harder ones to control. In the last 5 years, Cortica has been among the first in the industry to get monthly case rates from some insurers that package all of its work into a single payment per child, but Hattangadi says these can be difficult to administer in a model like theirs predicated on treating not just the child's autism spectrum disorder but all of their medical comorbidities and needs. Others concur. Eleanor Health’s chief medical officer Nzinga Harrison once told me that the monthly case rates based on acuity are all well and good until the person’s acuity changes. A payment model allowing for flexibility and controrl to the care team but financial responsibility for things like avoidable hospitalizations is what’s needed, and what’s worked in other areas of behavioral healthcare.
With autism care, "there are different types of services, with different fluctuating intensity, different comorbidities," so figuring out how to set a single monthly rate for an individual patient is near impossible, Hattangadi said. Typically, 3 tiers of case rate are needed, which creates further complexity for the provider and the insurer. The family unlikely knows which tier they’re in but they may feel the stress of a confusing system. The enhanced fee for service approach Alliance will use is basically a higher payment than your average applied behavioral analysis business, and it can work as long as it forces the provider to do 3 things:
Consistently get good medical outcomes on the things costing the system the most for children with autism spectrum disorders - so think seizures, gastrointestinal issues like GERD, sleep difficulty, and behavioral health issues
Raise the right kind of access to a coordinated network of medical specialists trained in all the usual things that can go wrong, and working together to solve them
Keep ABA center utilization in check, sometimes as low as 6-10 hours a week if it makes sense, sometimes much higher, always customized to the child, and predicated on finding ways to avoid crisis situations like mom taking son to the hospital
All of these costs have hit the health insurer's radar in recent years. "We're a lot more aware of the cost structure and how it's not just ABA hours driving up spend even if that's a big part of it," says Mark Sanderson, who directs value based data analytics for Mass General Brigham's Health Plan in Massachusetts. He noted some cases of children costing north of $500,000 over a few years. ABA, the treatment itself, is part of that story, but not the full piece.
Even if you lower the hours each week, the child will still often need help with the multitude of other challenges, says Hattangadi, whose business trains its own employed medical team of pediatric, developmental, and pediatric neuro specialists to spot, triage and treat the comorbidity. "95% of the time we can handle it, 5% of the time we refer out if it's more complex like cancer or suicidality."
The goal, he says, is to be the first into a global risk arrangement or shared savings model, as a solution to tamp down on the cost for insurers, and the chaos for families and schools on the frontlines. He acknowledges theirs more to do and more to improve. I asked him about dental care and oral health which are challenging for most people, exacerbated for those with ASD. He says that’s not yet a performance measure though ought to be. Cortica does help children get dental care by doing sensory and behavioral training, and providing medications if needed, and they help pediatric dentists with ways to provide the care so kids on the spectrum get teeth cleaned.
In many ways, the rise of these autism therapy services in the US and the struggles for policy makers, states and employers to pay for them mirrors some of the same ills that faced cancer care and substance use treatment providers 20 years ago. Back then, when I was a younger reporter, I recall finding out that most health insurers had medical directors who weren’t trained in cancer, and didn’t understand the problem isn’t really the chemotherapy, but what happens on days 5-7 after treatment. They didn’t know that wraparound services to head off a trip to the ER at night and provide social and emotional support are important to lower the total cost and help get with quality of life. They didn’t pay for a phone call home to the patient 24 hours after chemo as a way to head off a readmission to the hospital for the patient with nausea and pain.
That took years for policy makers and insurers to figure out. Similarly, substance use disorder companies once upon a time failed to add peer recovery support to their offerings because it didn’t bring in the dollars that a residential treatment facility could. But some companies are starting to see the value in peer recovery and community engagement, and more and more insurers are as well.
Peer recovery is effectively more hands on, day to day care without constraints - it’s the counselor meeting the patient in their community, not confined to a billable visit. And just as it has helped in some ways reduce cancer care costs and substance use relapse, so too can it help lower the cost of autism care. The pediatric neuro development companies - and the ABA sector within it - would likely benefit from leaning more fully into multi disciplinary thinking, better diagnostics, and contracting. Expect insurers to stay reactive for awhile - focusing on controlling high-hour ABA centers and cookie cutter care that may do more harm than good - but receptive to shared savings contracts that reward results.
"With fee for service you have to make a lot of assumptions since there's a lot more math in getting to that enhanced rate," Hattangadi notes. It’s not that it’s an antiquated payment model, it’s that it’s not the right one for this time and this population of children, and it holds back progress. States, insurers and policymakers will need to consider more advanced payment systems, but will need to engage with the multidisciplinary approach Cortica has, and that others may be trying to mimic.
At a minimum, we seem to be at a pivotal point for autism care in this country. It’s been about a decade starting in 2027 since some of the first major insurers (like Cigna and United Healthcare) moved away from policies that called 25+ hours a week of care “experimental.” In the years since, the industry has provided more hours, more access, more help to parents both in Medicaid and those with commercial insurance. But the question has now become more to what end? Does every child need 25, 30, 35 hours? Do parents even want that?
In our poll of 1,373 parents of children with ASD, just 18% said they like the 30 hours a week system. That’s just a small sample I’ll admit, but it suggests a system that costs more and doesn’t exactly meet the family where they are at.
This all seems to me like a wakeup call to refine the autism therapy system - both how to pay for care, and who to pay it to.