Jesse Zhang of NPR and KHN
Jesse Zhang of NPR and KHN
Rachel and her husband took Marcus from foster care in Guatemala as a 7-month-old baby and brought him back to Lansing, Michigan. Marcus, with a round face fringed with black hair, chuckled and spoke. He took out a sea animal from a flashcard and impressed other adults.
However, in preschool, Marcus began to resist school, throwing himself on the ground and pretending to be sick. The denial became more intense and difficult to deal with. His parents sought medical attention for him. Rachel and her husband had some savings for retirement, college, and emergencies. Initially, the cost of Marcus’ treatment was not an issue. “We didn’t know where it was going,” says Rachel.
Today Marcus is 15 years old and has a younger brother. His parents have drained their savings and are in debt to pay for treatment for severe depression, anxiety and mood disorders. Marcus was frequently agitated, became increasingly violent, and was unable to attend regular school. Over the years, he required weekly treatment, hospitalization, and specialized schooling, all of which cost him tens of thousands of dollars a month.
He needed numerous medical and mental health appointments, often miles from his family home. Rachel eventually quit her real estate broker job to care for his son, which took another financial hit on the family. With no suitable treatment options within hours of where they live, Marcus is currently in out-of-state residential care that specializes in treating children with conditions like his. helped adjust his behavior, but it costs him as much as $12,500 a month.
“All of our savings are gone,” says Rachel, who requested anonymity to protect her son’s privacy. She and her husband took out a second mortgage and a retirement account.
“How are you going to get the kids to school?” she says. “How am I going to recover from this? I don’t know.” “Those thoughts in your head — there’s no space for it when you’re trying to keep your child alive.”
Countless families like Rachel’s are coping with the myriad challenges of finding and paying for mental health care, and they end up in debt. There are too few therapists and psychologists in the United States – and even fewer to provide insurance-paid treatment. It exacerbates the financial burden on families.
Aggregating impact is not easy. Many people do the same as Rachel. I’m refinancing my house, using up my college savings, and borrowing from family. However, such borrowings are often not included in medical debt estimates. As a result, it was difficult to know how much my family was paying out of pocket for mental health treatment.
A recent KFF poll designed to measure the different ways people borrow to pay for health care shows that about 100 million Americans currently have some form of health insurance debt, of which 20 % were found to owe money for mental health services.
Those who can’t afford debt may try to cover their children with public insurance like Medicaid.
When even Medicaid isn’t always a safety net
After workplace health insurance denied coverage for her 9-year-old daughter, Colleen O’Donnell, a single mother from Providence, Rhode Island, quit her job, leaving her income below her Medicaid limit. O’Donnell, a registered nurse, could have had many bonuses for caring for COVID patients. Instead, she had to stay home and take care of her suffering daughter, among other things, she says. Disruptive mood dysregulation — a state that goes far beyond normal tween grumpiness. Treatment required more than just medication and visits to doctors and hospitals. The girl needed wraparound therapy that included home care. Her child’s unpredictable moods and her violent tantrums made it impossible for her to go to school or for her mother to hire a sitter to care for her.
“Being eligible for Medicaid basically means you’re living close to the poverty level. So I’m not creating any wealth, and I’m not saving for retirement.” says O’Donnell. She took out her second mortgage of $22,000. She estimates that at least $60,000 of her wages are lost annually. But it was still worthwhile for her to stay home with her child, she said, because the private health insurance she was receiving through her job didn’t pay for her daughter’s care. increase.
Some desperate families go to even more extreme efforts to get mental health care covered by Medicaid. There is also Others simply stop caring altogether.
So how much does this cost families across America? And how many people are abandoning care? It’s hard to know.
Lack of data keeps families struggling behind the scenes
“There is no real data,” says Patrick Kennedy, former US Congressman and founder of the Kennedy Forum, a mental health advocacy group. Overall, he says, there is a disappointing lack of data when it comes to mental illness. “We don’t track this. We have a jumbled report that isn’t standardized.”
That lack of data has left many people in the shadows, says Kennedy. It is difficult to hold an insurance company liable. legal obligation They have to pay for mental health care or debate certain policy changes from the regulators that oversee them. should not be burdened with problems.
“If you are a family member or someone who has one of these diseases, you are incapable of defending yourself.
Lansing’s mother, Rachel, estimates that Marcus’ medical bills have exceeded $250,000 in the last two years alone. Almost all of them were caused by care that insurance companies refused to cover, according to Rachel.
Over the years, Marcus underwent numerous neuropsychological tests to measure gaps in how he perceives the world, from intelligence and personality to trauma and athleticism. Each test costs thousands of dollars. Weekly treatment costs $120. Special schools, including wilderness therapy programs, cost thousands of dollars a month, but insurance doesn’t cover most of it, Rachel says.
Health insurance companies cited a variety of reasons. Wilderness remedies were considered too experimental, even if they worked. No other treatments were in the network. Even when Marcus becomes increasingly violent and endangers himself and others, the insurance agent tells Rachel that it is “not medically necessary” or that re-approval will be required. Because of this, I repeatedly informed her that the various types of inpatient or residential treatment programs and specialists recommended for her would not be covered. within days.
Meanwhile, problems at Marcus’ home were escalating. “I hid,” Rachel said, hoarsely. “I found a hiding place so my child couldn’t find me. He hurt me. He attacked me, threw things at me, pushed me.”
Faced with this do-or-die situation, Rachel and her husband decided to pay for the treatment themselves and fight insurance and lawyers later. , sent to an out-of-state therapeutic school that specializes in educating children with behavioral disorders.
What Happened to “Mental Health Equity” in Redemption?
Even though various federal and state laws require insurance companies to cover services such as CT scans, surgeries, and addiction treatments equivalent to cancer treatments, out-of-network out-of-network services for mental health treatment Increasing reliance on care is also a national trend. 2019 report commissioned by the Institute of Mental Health Treatment Between 2013 and 2017, we found that these disparities worsened significantly, especially among children, effectively pushing more patients to seek behavioral health care outside their insurance company’s network. Became.
The industry group, the American Health Insurance Program (AHIP), said the industry complies with existing legislation and is working to expand options to meet the growing demand for mental health care.
“Given the shortage of manpower and capacity, [mental health and substance use disorder] It is important that patients receive the appropriate level of care and help maintain a higher level of care for those who need it most,” AHIP spokesman David Allen said in an email. rice field.Add providers to your network and add telemedicine options to extend your reach to locations such as school or family doctor’s officeBut not all types of care are covered, he said. “It is important to ensure that people receive quality, evidence-based care.”
Regulators slow to crack down on insurers for inappropriate ‘denial of coverage’
But Deborah Steinberg, a health policy attorney at the Legal Action Center for Consumer Advocacy, says insurance companies too often unfairly deny coverage for adequate treatment. Few consumers know how to judge that and end up paying the bill.
“They aren’t necessarily invoices actually [patients and families] In many cases, these are illegal activities, so you have to pay,” says Steinberg. And when people pay their bills or withdraw as credit card debt, they’re not disputing those practices. “
Also, regulators have been reluctant to crack down on insurers or pay fines for violations.
That is what Ali Hawar promises to change. Mr Khawar, deputy secretary-general of the Ministry of Labor’s Department of Employee Benefits, which oversees private insurance companies, said: A report his agency submitted to Congress earlier this year Indicates a high level violation. The report also shows that the insurance industry does not have sufficient data on parity law compliance.
But Khawar said mental health care coverage is an issue he hears about in every corner of his life, and the fact that so many families suffer makes this a top priority for his agency. Make it a priority. “Unprecedented levels of attention and resources are being put into these issues,” he says.
Enforcing insurance regulations is often the responsibility of the attorney general, and the willingness and available resources to do so vary from state to state.
In Michigan, where attorney JJ Conway works, the state has been reluctant to investigate the industry, he said. Therefore, if the family wants it, they must seek recourse themselves, he said. Denial of Coverage Disputes with their insurance company. Conway, who represents Rachel’s family and many other parents, says his mental health problems have skyrocketed in his 25 years as an attorney.
Conway says it’s a strange glimmer of hope for the vast numbers of families struggling to get mental health coverage. There are so many incidents, he says, that he hopes they will eventually be able to force change.
this story is part Diagnosis: Debt, reporting partnerships between KHN NPR examines the size, impact, and causes of health care debt in America. KHN (Kaiser Health News) is an editorially independent national program. KFFMore (Kaiser Family Foundation).
