MARY LOUISE KELLY, HOST:
Today is World Mental Health Day. It comes as young people especially are in crisis and as there's a shortage of therapists and doctors able to treat them. Those dynamics are leading to a huge parallel problem for many families - debt related to that treatment. A recent survey by Kaiser Family Foundation and NPR found 20% of those with medical debt say they incurred it because of mental health care. But as NPR's Yuki Noguchi reports, there are no good estimates of the true cost of this care for families.
YUKI NOGUCHI, BYLINE: Rachel, a mother of two in Lansing, Mich., has old videos of Marcus as a happy, giggly baby.
(SOUNDBITE OF ARCHIVED RECORDING)
MARCUS: (Laughter).
NOGUCHI: Marcus was adopted from a Guatemalan foster family at 7 months. His mother says he learned words quickly and loved sea animals.
RACHEL: And he memorized those. He was like, that's a narwhal. Like, people were so impressed by his ability to just retain information.
NOGUCHI: But in preschool, Marcus began resisting school. His parents sought therapy. Rachel says they were savers, so at first, money wasn't an issue.
RACHEL: So I was like, we're fine. We can afford this - no big deal. We didn't realize where it was going.
NOGUCHI: Marcus' depression, anxiety and mood disorders worsened. We're not using his real name or their last name to protect his privacy. Marcus required around-the-clock care, so Rachel gave up her job as a real estate broker. By the time he was a teenager, he was increasingly violent.
RACHEL: There were times that I hid so that my kid couldn't find me. He would hurt me. He would attack me, throw things at me, push me.
NOGUCHI: Neuropsychological tests cost $15,000. Weekly therapy cost $120, nearly all of it out of pocket. Their insurers cited various reasons not to cover his treatments - it was experimental; it wasn't in-network - even when he became a danger to himself and others.
RACHEL: They said it wasn't medically necessary.
NOGUCHI: Untold numbers of families like Rachel's are dealing with myriad challenges - finding and paying for mental health care, then ending up in debt. There are too few therapists and psychologists in the U.S. and fewer still who accept insurance. Tabulating the impact of that isn't easy. It's hard to know how or how much families pay for treatment. Many do what Rachel did. They take on second mortgages, drain college savings, borrow from family and quit their jobs to be caretakers. Some families try to get coverage under Medicaid, which might mean reducing their income to qualify. The most desperate even leave their kids at hospitals, making them wards of the state in order to qualify. Others simply forgo care altogether. So how much is this costing families across America, and how many are forgoing care? It's hard to know.
PATRICK KENNEDY: Hello. We don't have real data.
NOGUCHI: Patrick Kennedy is a former U.S. congressman and founder of the Kennedy Forum, a mental health advocacy group. He says across the board, there's a lamentable lack of data about mental illness.
KENNEDY: We don't track this. We have a hodgepodge of reporting that's not standardized.
NOGUCHI: He says that lack of data keeps many people in the shadows. It makes it hard to hold insurers accountable or to argue for specific policy changes from regulators that oversee them. Kennedy says many families are too busy fighting to survive.
KENNEDY: If you are a family member or someone who has one of these illnesses, you don't have the capacity, really, for self-advocacy, right? And, you know, shame still factors in in a large way.
NOGUCHI: Faced with their own do-or-die situation, Rachel and her husband decided, let's pay and fight it out with insurance and lawyers later. For the past year, they've sent Marcus, who is now 15, to residential care out of state. That costs more than $12,000 a month.
RACHEL: All of our savings is gone. How are we going to send our kids to school? How are we going to - like, what are we going to do when it's time for - like, how are we going to recover from this? I don't know. Those thoughts in your mind - like, there's no space for that when you are just trying to keep your child alive.
NOGUCHI: Marcus' care has cost them a quarter of a million dollars in just the last two years. Nearly all of that, Rachel says, was driven by the care their insurance company denied, leaving no choice but to go out of network.
That's happening nationally. Federal and state laws require insurers to cover mental health on par with medical care. But a 2019 report from the Mental Health Treatment and Research Institute found those disparities getting worse. More patients are going out of network for mental and behavioral health. America's Health Insurance Plans, the industry association, said in a statement the industry is adding more providers to its networks and relying more on telehealth. But Deborah Steinberg, a health policy lawyer at the Legal Action Center, says improper insurance denials are still far too common. She says consumers often pay bills they shouldn't.
DEBORAH STEINBERG: They are actually not necessarily bills they should be paying because a lot of the time, these are, like, illegal practices. There are so many complicated laws here that people don't understand. And when people pay the bills or take it out as credit card debt, they're not challenging those practices.
NOGUCHI: Consumer advocates say regulators haven't challenged those practices either. That's something Ali Khawar pledges will change. He's an acting assistant secretary at the Labor Department, which regulates private insurers. Khawar says his agency's own report earlier this year shows high levels of violations by insurance companies. He says that and the fact so many families are struggling as a result makes this a top priority.
ALI KHAWAR: There is a level of attention, a level of resources being put to these issues that is kind of unprecedented.
NOGUCHI: In the meantime, Michigan attorney J.J. Conway says families have had to seek recourse on their own. He represents Rachel's family and others taking their insurers to court.
J J CONWAY: Now it's the largest number of cases we've handled on a mental health basis. My practice has been open for almost 25 years.
NOGUCHI: The cases are so numerous, Conway says, he hopes collectively they'll be able to force a change.
Yuki Noguchi, NPR News.
(SOUNDBITE OF ELHAE SONG, "KNOW") Transcript provided by NPR, Copyright NPR.
