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Denied: ProPublica Exposes UnitedHealth Profiteering Off Limiting Care for Children with Autism

StoryDecember 16, 2024
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Private healthcare companies are facing increased scrutiny following the killing of UnitedHealthcare CEO Brian Thompson over what appears to be dissatisfaction with the company’s exploitative policies and frequent denials of care. Recent investigations from ProPublica and reporter Annie Waldman find that UnitedHealthcare is aggressively trying to limit mental health coverage and treatment for thousands of children with autism in its latest effort to cut costs and curtail care.

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Transcript
This is a rush transcript. Copy may not be in its final form.

AMY GOODMAN: This is Democracy Now!, democracynow.org. I’m Amy Goodman, with Juan González.

JUAN GONZÁLEZ: Well, we end today’s show with a look more closely at UnitedHealth’s policies. ProPublica has just published an exposé looking at how UnitedHealth is aggressively trying to limit treatment for thousands of children with autism in an effort to cut costs. The ProPublica report is based on leaked documents from inside the company. Last month, ProPublica exposed how UnitedHealth is limiting mental health coverage for many in another cost-saving measure.

AMY GOODMAN: We’re joined now by Annie Waldman, an award-winning reporter at ProPublica who broke both of these stories.

Annie, welcome to Democracy Now! Lay out what you found.

ANNIE WALDMAN: Yeah, so, this year, my colleagues and I have been investigating how insurance companies interfere with mental healthcare. And we have spoken with hundreds of providers, patients from all across the country, and they have described to us many challenges that they’ve had with insurance companies. But one company in particular has stood out — and this is even before the events of the past few weeks — and that is UnitedHealth Group, as well as UnitedHealthcare, its insurance company, as well as its division Optum, which manages its mental health benefits. And over the course of our reporting, we have obtained leaked documents which are effectively the company’s internal playbook for limiting mental healthcare. And in these documents, we have uncovered that the company has engaged in a secret internal cost-cutting strategy that is essentially trying to limit the care of children with autism all across the country.

JUAN GONZÁLEZ: And how, precisely, do they do this?

ANNIE WALDMAN: So, the internal documents show that there is a specialized therapy for children with autism that the company calls — and these are the company’s words — “the gold standard treatment.” They say it’s evidence-based. And over the past few years, there has been an increase in the number of children diagnosed with autism spectrum disorder. Because of this increase, it’s put a lot of pressure on the company’s bottom line. And so, they have developed market plans, special action plans to essentially limit access to this care.

They are doing it in two ways. First, they are trying to limit access to the therapy itself by pushing providers out of the network. They are preventing new providers of this specific therapy from joining their insurance networks, and they are terminating the contracts of providers who are already in their network, citing cost outliers as one of the reasons for that. And this can be very detrimental to families, who — you know, this therapy is incredibly expensive. It’s very hard to pay for it out of pocket. And so, if their provider is kicked out of their insurance network, their children may not have access to this care. The other thing that they’re doing is they’re engaging in a rigorous utilization management review system, which essentially means that they are targeting providers, calling them up on the phone and then questioning them about the medical necessity of the treatment. This can lead to denials of coverage for many families.

AMY GOODMAN: So, let’s make this real with an example of a story. Tell us the story of Sharelle Menard and her son Benji, diagnosed when he was 3 years old with autism.

ANNIE WALDMAN: That’s right. So, over the past couple of months, I’ve been trying to understand, you know, what are the real human stories behind these documents. It can look like jargon, very dry on the page. But then, when you speak to families, you really realize how this impacts them.

I’ve spent a number of — over the past few months, spent some time with Sharelle Menard and her son Benji. He’s 10 years old. He’s severely affected by autism. He only speaks a few dozen words. They’re based in Lafayette, Louisiana, here in Louisiana, where I’m based. And, you know, what has happened is that Benji has had increased behavioral challenges over the past year. His clinical team has decided that they want to increase the number of hours of his therapy, so they went to his insurer, which is UnitedHealthcare, by way of Medicaid, and they asked to increase the number of hours of coverage that he is in therapy. But they were denied. And essentially, what the company said was that Benji had been in this specific therapy for too long, and they did not believe that he was going to make enough progress to, essentially, be able to leave this therapy. You know, experts — we showed the denial to many experts and advocates, who said this was outrageous, that this type of therapy can be used for the maintenance of, you know, or prevention of deterioration, or just to help kids maintain the progress that they’ve already had. And so, Sharelle Menard now has to go to an official administrative law review in order to try to get this denial overturned. She’s doing that next month, in January.

JUAN GONZÁLEZ: And how might UnitedHealthcare’s strategy be violating a federal law?

ANNIE WALDMAN: Yeah, so, most people don’t realize this, but there’s actually a federal law that protects mental and behavioral health benefits. It’s called the Mental Health Parity Act. It was passed in 2008. And essentially, what it means is that insurance companies cannot limit your access to mental healthcare, that they essentially have to provide similar access to physical healthcare as they do for mental healthcare. And so, if this company is using similar strategies to limit physical healthcare, perhaps it’s kosher. But, you know, the experts and the advocates that we’ve spoken to have said that this strategy is legally questionable. On top of that, it appears that the company is actually targeting Medicaid plans, so the most vulnerable and the poorest families amongst us, with this strategy. And so, this strategy may actually — according to the advocates we’ve spoken with, it might violate Medicaid laws, as well, which require prompt access to medically necessary care for children.

JUAN GONZÁLEZ: And when you say that they are targeting Medicaid plans, are they managing Medicaid plans, like they do with Medicare Advantage?

ANNIE WALDMAN: That’s correct. United actually manages Medicaid plans in two dozen states and for about 6 million people, including 10,000 children with autism spectrum disorder. And so, how these Medicaid-managed care plans tend or typically operate is that the company receives a specific fixed amount of money for a patient regardless of how many services they use or the intensity of those services, and if there’s money left over, the company, which are typically these private insurers, are allowed to keep what’s left over. You know, federal investigators, as well as experts, have said that there might be an incentive that’s put in place, that they might try to deny care in order to pocket the additional sum. So, there have been questions about whether this is the most appropriate setup, particularly for Medicaid plans or any other type of public funding for healthcare.

AMY GOODMAN: Annie, we only have a minute, but you write about United’s algorithm program, saying, quote, “Called ALERT, the algorithmic system was created years earlier to identify patients at risk of suicide or substance [use]. The company redeployed it to identify therapy overuse.” Can you elaborate on this, as we wrap up?

ANNIE WALDMAN: Yeah, so, we spoke with hundreds of providers, as I mentioned, and many of them told us about this mystery. They were getting flagged by the insurance company for these aggressive reviews, where they would be questioned about the medical necessity of their therapy for their patients, and potentially that therapy could be cut off. What we found out was, actually, the company had been investigated in three different states and by the Department of Labor for these practices, and they were told that it was illegal, and they had to stop it in these jurisdictions. However, the way that our regulation of health insurance works in this country is that it really depends on the jurisdiction in which these actions take place. So, even though UnitedHealthcare was told that it was doing something illegal in three different states, it could actually continue to operate with this strategy in other states, unless those states took the enforcement. And so, what we found is that the company, in effect, rebranded this system, and they’re using similar practices around the country to, essentially, question and potentially cut off care.

AMY GOODMAN: Annie Waldman, there’s so much to cover here. We’re going to link to your reports. Annie’s speaking to us from New Orleans, in Louisiana. She’s a reporter at ProPublica covering healthcare. We’ll link your articles, “UnitedHealth Is Strategically Limiting Access to Critical Treatment for Kids with Autism,” as well as “How UnitedHealth’s Playbook for Limiting Mental Health Coverage Puts Countless Americans’ Treatment at Risk.”

That does it for our show. Happy birthday, Renée Feltz! I’m Amy Goodman, sitting right next to Juan González here in New York.

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