Teen with life-threatening depression finally found hope. Then insurance cut her off
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.
"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.
When 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."
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.
"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 increasingly 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.)
The call began with the Medical Mutual physician suggesting Rose be transitioned to a "lower level" of care – like a partial hospitalization program or virtual DBT sessions that she could do from home. "[It's] so hard to find the right time to transition to a lower level," the reviewer said, "but I felt like that this wasn't a bad time."
The reviewer repeatedly raises the need to step Rose down to a lower level of care, even as Rose's psychiatrist stresses that it would be unsafe to send her home, or move her to another program.
"She's at a point where if she were at home," he said, "I could expect an attempt, I would expect ongoing self-harm behaviors."
But the Medical Mutual physician insists on getting an estimated end date for Rose's treatment, stating that "Medical Mutual's never approved" such "a long treatment" plan before.
"The insurer was making decisions on what appear to be time-based expectations," says Psych-Appeal's Bendat. "In other words, we've paid for a month, two months, and we think that your child should either be better by now or attempt and possibly fail at another [lower] level of care that's less restrictive. Then, if things go awry and your child survives to tell about it, maybe we'll put that kid again in residential treatment."
Such treatment time frames imposed by private insurers are a "vestige" of how insurance companies approached mental health care before there were parity laws, he explains.
During the phone call with Rose's psychiatrist, the insurance company physician also asks: "So when will it go well for her? When will she ever go home?"
This kind of language and approach is discriminatory, says Parks of the National Council for Mental Wellbeing. NPR shared the recording of the calls with Dr. Parks.
"Most of the reviewer's questions didn't really reference the patient's condition," he says.
Besides, he adds, the reviewer doesn't use any medical/psychiatric criteria to guide the discussion about Rose's treatment. "The provider's saying 'They need more [time], they're not doing that well, they're not ready yet.' And the reviewer is saying, 'But they have to go home some day."
It's a clear failure to comply with mental health parity, he adds. A patient recovering from a recent heart attack, for example, would never be sent home if they were still having chest pains and shortness of breath.
When Medical Mutual finally cut off coverage in November, 2020, Michael and Rochelle were faced with a tough choice. They could take their daughter home despite the treatment team saying she wouldn't be safe at home, or keep her in the program and pay out of pocket.
They chose to pay $1,000 per day to keep their daughter in the program.
"Luckily we could do that," says Rochelle. "I'm imagining most people just go pick up their kid and try to figure it out at home."
But in January, when they ran out of funds – Rose's stay at Rogers had cost them more than $40,000 out-of-pocket – they "fast-forwarded her release," says Rochelle.
Despite all the progress Rose had made in the program, the transition proved rough on her.
"Two and a half weeks later, we're back in the emergency department," says Rochelle, because Rose had once again attempted suicide.
While Rochelle busied herself with watching Rose and connecting her to outpatient care, Michael filed an external appeal with the Ohio Department of Insurance.
In 2022, the department received a total of 18 requests for external reviews related to mental health and substance use treatment, according to a department spokesperson. Eight of those cases were upheld in the company's favor, 7 were overturned in the consumer's favor and 3 cases are still pending.
As for Rose's case, the Ohio Department of Insurance assigned an independent organization called Lumetra Healthcare Solutions to review it. In August 2021, the organization overturned Medical Mutual of Ohio's denial of coverage for Rose's treatment at Rogers.
In its report, the reviewer at Lumetra wrote that the insurance company's denial was "not appropriate," because all of Rose's medical records show that she was at high risk for self-harm and suicide.
The report also concluded that Rose's ongoing treatment at Rogers was medically necessary, and Medical Mutual of Ohio was required to cover the remainder of Rose's treatment at Rogers Behavioral Health.
"They didn't pay me," says Michael. "They paid Rogers, and then I had to go collect from Rogers."
Michael says he's relieved that the external review worked in the family's favor, but it shouldn't have taken nine months of red tape.
"It just doesn't seem right the way they were treating me," he says, "the way I know they're probably treating other people in similar circumstances, but don't have the means to pay out of pocket and don't have the time, energy, knowledge or resources to hold the insurance company accountable."
Michael and Rochelle still worry about Rose, who's now 17. She is stable but still struggles.
"She still has a high level of depression and anxiety and high level suicidal ideation," says Michael. "So it's sort of day by day, week by week."
But she's made significant progress, he adds. Rose currently takes courses, works with animals she loves and even makes plans for the future. And for that, he says, he is grateful.
This story was edited by Diane Webber. Visuals were produced by Meredith Rizzo.
Copyright 2023 NPR. To see more, visit https://www.npr.org.
An earlier version of this story had the wrong year for when the Mental Health Parity and Addiction Equity Act passed. It passed in 2008.