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Keith Negley for NPR
If you or someone you know may be considering suicide, contact the 988 Suicide & Crisis Lifeline by calling or texting 9-8-8, or the Crisis Text Line by texting HOME to 741741.
Rose had already attempted suicide at least half a dozen times before the teenager’s parents found an appropriate residential care facility for her, three states and more than 500 miles away.
Rose, then 15, had been in and out of the emergency department at Nationwide Children’s Hospital in Columbus, Ohio. She had tried two residential programs and one partial hospitalization program in two separate states. But nothing had eased her suicidal urges.
Finally, she was getting a treatment that was helping at Rogers Behavioral Health in Oconomowoc, Wis., a small town 35 minutes west of Milwaukee.
But a little over two months into her stay, just as Rose was starting to feel better, the family’s health insurance – Medical Mutual of Ohio – declined to cover any further treatment.
“I was in my office when we got an email from Rogers that included a copy of the fax denial,” says Rose’s father, Michael. “I was shocked.”
The denial of health insurance coverage for mental health treatment continues to be extremely common, despite federal and state parity laws that are supposed to ensure fairness. But as Rose’s parents discovered, the parity laws are rarely enforced and people with severe mental illness often must rely on their own resources to get care.
(NPR has agreed to use middle names only for the family since this story involves a minor with mental illness.)
A long road to effective care
Rose’s life-threatening depression, anxiety and chronic suicidality consumed her parents’ focus. Michael, a corporate lawyer, took on navigating insurance hurdles and figuring out how to pay for her treatment. Her mother, Rochelle, quit her job as a school counselor, to keep a close eye on her daughter.
She also became Rose’s care coordinator, making appointments, getting her there, researching treatment options. When outpatient treatment didn’t help, Rochelle found residential alternatives for kids with more serious symptoms.
And the family had already spent thousands of dollars on treatments that were unsuccessful in addressing the range of Rose’s symptoms that started when she was 13 years old.
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“The vast majority of [providers] do not accept private insurance,” says Michael. “We pay for that on an hourly basis, and it’s added up to tens of thousands of dollars over a period of a couple of years.”
Then, in the summer of 2020, Rochelle stumbled upon an evidence-based form of treatment for suicide that they hadn’t tried yet: Dialectical Behavioral Therapy, or DBT. It’s a form of talk therapy designed specifically for people with chronic suicidality. She learned that Rogers Behavioral Health offered a residential DBT program for adolescent girls. Luckily, they also had a spot open for Rose.
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Keith Negley for NPR
Keith Negley for NPRWhen Michael and Rochelle met the attending psychiatrist at the program at Rogers, they felt a sense of hope and relief for the first time in two years.
It was “the first connection that I had personally with a therapist who said, ‘I have seen this before. These are the kids that we work with,'” recalls Rochelle.
Hearing that, “my stress levels just dropped,” she says.
DBT is a structured form of treatment which includes individual, group and family therapy (for kids) and teaches people to accept their circumstances, while giving them key skills to help them change their thought patterns and behaviors. The skills help them manage their distress and regulate their emotions.
A large clinical trial published in 2018 in JAMA Psychiatry showed that DBT is more effective in helping teens with repeat suicide attempts and self-harm compared to more general therapeutic approach.
A six-month, outpatient DBT treatment is “sort of the starting point,” for kids with moderate to severe suicidality, says Dr. Vera Feuer, the director of the emergency psychiatry division at Northwell Health in New York. “Usually six months is a decent amount of time to learn the skills, to integrate them.”
However, residential treatment usually yields results faster, says Dr. Stephanie Eken, chief medical officer at Rogers Behavioral Health. “Residential gives results in about three months,” she says, “because it’s a more intense level of care, more treatment around the clock.”
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Getting better, then getting denied
About two months into the DBT program, Rose began to show signs of improvement.
“She started connecting with her therapist finally,” says Rochelle. “We’re having good once-a-week family therapy calls, where she’s telling us some of the things that are working for her, and that she’s starting to look at things a little bit differently.”
And most importantly, Rose was starting to talk about wanting to live again, which “we hadn’t heard her do in a couple of years,” Rochelle says.
Michael remembers seeing those changes, too: “That was really the first glimmer of hope that we had seen in probably two years, so we thought we were on the right track.”
But soon, the insurance company wanted to move her to a lower level of care, like a partial hospitalization program.
That was really the first glimmer of hope that we had seen in probably two years, so we thought we were on the right track.
“It didn’t make sense to me,” says her father Michael. “And more importantly, it made no sense to her treating psychiatrist and the treatment team. They said, ‘it was unworkable, it was extremely dangerous, and would likely lead to a worsening of her symptoms.'”
An internal appeal later filed by Rogers Behavioral Health to Medical Mutual states that discontinuing Rose’s treatment “could interrupt recovery gains” and prove harmful to her.
Medical Mutual of Ohio declined an interview request from NPR. A company spokesperson said in an e-mail statement that their decision to deny further coverage “was made with the guidance of industry-leading, evidence-based guidelines and the review of board-certified physicians trained in the area of medicine” related to Rose’s care.
‘A long history of discriminating’
Families routinely get denied access to mental health coverage, especially when on private insurance, says Ellen Weber, vice president for health initiatives at Legal Action Center, a non-profit that works on improving health equity.
“Private insurance has never treated mental health and substance use services in an equitable, fair way,” she says.
“This goes back to a long history of discriminating against mental illnesses, patients with mental health disorders,” says Meiram Bendat, founder and president of Psych-Appeal, a law firm that helps patients and providers fight denials by insurance companies.
Health insurance policies used to have “limited mental health benefits,” explains Dr. Joseph Parks, a psychiatrist and medical director at the National Council for Mental Wellbeing. “You only got so many days. And when the days were up, the days were up.”
In 1998, a limited federal mental health parity law took effect. Then in 2008, Congress passed the Mental Health Parity and Addiction Equity Act, which requires insurance companies to cover mental health treatment no differently than how they cover physical health. States also have mental health parity laws in place.
So, Parks says, insurance companies were forced to change their contracts and remove previous limitations they had for mental health conditions. But little has changed in practice, he adds.
Insurance companies don’t “know what to do with people that have much longer term needs,” he says.
So, they continue to violate parity laws, says the Legal Action Center’s Weber. And they do this by treating mental health conditions as acute health issues, and not the chronic conditions they really are.
For example, if a suicidal patient is past a suicidal crisis, insurance plans often try to move them to a lower level, and “a much less expensive level of care,” she explains.
And that’s what happened in Rose’s case.
A string of denials and review calls
Michael’s high deductible health plan posed hurdles to Rose’s treatment right from the beginning. For one, they required the treatment to be pre-approved by the insurance company.
Prior-authorizations are widely used by health plans to examine whether a certain drug or treatment plan is medically necessary, a practice that has come under increasing scrutiny in recent years for delaying care and hurting the health of patients. On the mental and behavioral health side, states and the federal government are i ncreasingly requiring health plans to eliminate prior-authorizations to better comply with the federal parity law.
After initially approving Rose’s treatment for a few weeks, Medical Mutual of Ohio declined coverage a few times. However, each time Rogers Behavioral Health appealed that decision on behalf of Rose’s parents and succeeded in extending her treatment.
“Our experience is that Medical Mutual is always looking for any excuse and opportunity to deny coverage at the residential level and urging and insisting that they try something different, something less expensive,” adds Michael.
NPR obtained recordings of a phone call between Rose’s psychiatrist on October 30, 2020, and a reviewer – a physician – from Medical Mutual of Ohio. (NPR is not naming the physicians because neither had permission to speak to NPR, and we could not give them the chance to follow up.)
Listen to tape from Rose’s insurance review
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