JUANA SUMMERS, HOST:
In the past two decades, the number of children in the U.S. diagnosed with autism has skyrocketed. Today, roughly 1 in 36 children have been diagnosed, and that means more people have been using health insurance to cover treatments. But recently, insurance companies have been denying this care. Months ago, before the killing of Brian Thompson reignited a nationwide debate on the health care system, ProPublica reporter Annie Waldman began looking into this. She found that UnitedHealthcare had been strategically denying access to care for families living with autism. Our cohost, Ailsa Chang, asked Waldman how she came across this story.
ANNIE WALDMAN: Yeah. So this year, my colleagues and I at ProPublica, we have been focusing very broadly on investigating how insurance companies interfere with mental health care. You know, we did hundreds of interviews with providers and patients. And notably, in our interviews, one company in particular stood out - UnitedHealth Group and its subsidiaries, UnitedHealthcare, which manages the insurance side, and Optum, which manages the insurer's mental health benefits.
And over the course of our reporting, we obtained leaked documents from inside the company. It has revealed - the documents have revealed what is effectively the company's internal playbook for limiting mental health coverage. And from these documents, we were able to uncover that the company has, in essence, developed a secret internal cost-cutting campaign that is targeting a growing financial burden for the company, and that is the treatment of thousands of children with autism across the country.
AILSA CHANG, HOST:
Right. And your reporting centers on a specific kind of mental health treatment for children with autism. Can you describe what that treatment is?
WALDMAN: Yeah. So in internal reports, the company says that it considers a specialized therapy for children with autism, called applied behavior analysis, the, quote, "evidence-based gold standard treatment for those with medically necessary needs." Now, those are the words of the company. It's a therapy that helps children with autism develop skills, using repetition and positive reinforcement to affirm behaviors. But in recent years, as you were mentioning, there has been a rapid increase in the number of children diagnosed with autism, from 1 in 150 kids about 20 years ago, to now about 1 in 36 kids.
CHANG: Right.
WALDMAN: Experts say this is largely due to greater awareness and increased screening of children, but it also has put pressure on the company's bottom line as more families have sought out therapy. So what we saw in these documents is that the company has put together, essentially, these action plans to address the growing need for this therapy.
CHANG: OK. And tell me this. If applied behavior analysis, this particular treatment for children living with autism, is the so-called gold standard treatment, why is UnitedHealthcare limiting coverage of this type of therapy?
WALDMAN: That's a great question. You know, the therapy is incredibly expensive. It can cost tens of thousands of dollar a year for any given child. And most families can't afford to pay out of pocket for this therapy.
CHANG: Right.
WALDMAN: So they really rely on their insurance coverage to pay for it. In all 50 states, legislators have passed laws requiring insurance companies to pay for the therapy, and Medicaid in most states also pays for the therapy as well. But again, that has led to increased - you know, more families are requesting this therapy, they're requesting their insurance companies to pay for it, and that has led to an increase in expenses.
CHANG: And if families are not able to access applied behavior analysis - families living with autism - tell us about the potential consequences to the children involved.
WALDMAN: Yeah. So this can have drastic implications for children who are in this type of therapy, and specifically on Medicaid, which it appears the company is targeting. We spoke with one family, Sharelle Menard and her son Benji in Lafayette, Louisiana. Benji's 10 years old, and he's severely affected by autism. He's minimally speaking. He's able to just speak a few dozen words, and he often gets frustrated when struggling to communicate. And his mother says this therapy has been one of the only things to help him develop critically important skills.
But this year, UnitedHealthcare denied him the therapy hours that his clinicians say that he needs. His clinical team asked for more hours to help Benji work through some behavior challenges, and United essentially said in its denial of his care that he has not shown enough progress to warrant the requested hours. You know, if Benji doesn't get this therapy, his mother worries that as he ages, he won't develop the skills he needs to keep himself safe and be able to advocate for himself. And so now his clinical team are fighting this denial, and they're going to go to an administrative law hearing in January to try to get it overturned.
CHANG: So what does UnitedHealthcare say about your reporting? Because you have tried to seek their comment.
WALDMAN: That's correct. Yes. We reached out to United and Optum over a month ago, and we requested an on-the-record interview about their coverage of behavioral health care. They declined. We also sent them questions 11 days before our story came out, but they did not respond to our questions, citing the December 4 killing of the UnitedHealthcare CEO Brian Thompson as a reason. In an email, a spokesperson said that they were in mourning and they could not engage with a non-urgent story during this time.
CHANG: And what about in the days since? They still have not engaged?
WALDMAN: Yeah, they still have not engaged with us. But we're going to continue to report on this story, and so we really do hope that there will be an open conversation about this and the practices related to children with autism and their therapy.
CHANG: That is ProPublica reporter, Annie Waldman. Thank you so much for your reporting, Annie.
WALDMAN: Thanks for having me.
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