This article <\/a>was republished from\u00a0Kaiser Health News.<\/em><\/small><\/p>\n Rachel and her husband adopted Marcus out of Guatemalan foster care as a 7-month-old infant and brought him home to Lansing, Michigan. With a round face framed by a full head of dark hair, Marcus was giggly and verbal \u2014 learning names of sea animals off flashcards, impressing other adults.<\/p>\n But in preschool, Marcus began resisting school, throwing himself on the ground, or pretending to be sick \u2014 refusals that got more intense and difficult to deal with. His parents sought therapy for him. Rachel and her husband had some savings for retirement, college, and emergencies; at first, the cost of Marcus\u2019 therapy was not an issue. \u201cWe didn\u2019t realize where it was going,\u201d Rachel said.<\/p>\n Today, Marcus is 15 and has a younger sibling. His parents have depleted their savings and gone into debt to pay for treatments for his severe depression, anxiety, and mood disorders. Frequently agitated and increasingly violent, Marcus could not attend a regular school. Over the years, he\u2019s needed weekly therapy, hospitalization, and specialized schooling \u2014 all of which has cost tens of thousands of dollars a month.<\/p>\n He required lots of medical and mental health appointments that were often many miles from the family\u2019s home. Rachel ultimately quit her real estate broker\u2019s job to care for her son, and with that the family took another financial hit. With no good treatment options within hours of where they live, Marcus is now in residential care out of state that specializes in therapy for children with conditions like his. That\u2019s helped modulate his behavior, but also costs $12,500 a month.<\/p>\n \u201cAll of our savings is gone,\u201d said Rachel, who spoke on condition of anonymity to protect her son\u2019s privacy. She and her husband have taken out a second mortgage and borrowed against their retirement accounts.<\/p>\n \u201cHow are we going to send our kids to school?\u201d she said. \u201cHow are we going to recover from this? I don\u2019t know.\u201d Just surviving the string of crises is all-consuming. \u201cThose thoughts in your mind \u2014 there\u2019s no space for that when you are just trying to keep your child alive.\u201d<\/p>\n Untold numbers of families like Rachel\u2019s are dealing with myriad challenges finding and paying for mental health care, and then ending up in debt. There are too few therapists and psychologists in the U.S. \u2014 and fewer still who accept insurance. That compounds the financial toll on families.<\/p>\n Tabulating the impact isn\u2019t easy. Many do what Rachel did: They refinance their houses, drain college savings, or borrow from family. But that kind of borrowing often isn\u2019t included in estimates of medical debt. As a result, it\u2019s hard to know how much families are paying out of their pockets for mental health treatment.<\/p>\n A recent KFF poll<\/a> designed to measure the many ways people borrow to pay medical bills found that about 100 million Americans have some kind of health care debt, and 20% of those owe money for mental health services.<\/p>\n Those who can\u2019t afford to borrow sometimes try to get coverage for their children under public insurance like Medicaid, which sometimes means reducing their income to qualify.<\/p>\n When Even Medicaid Isn\u2019t a Safety Net<\/strong><\/p>\n After her workplace health insurance denied coverage for her 9-year-old daughter, Colleen O\u2019Donnell, a single mom from Providence, Rhode Island, applied for a\u00a0special waiver<\/a>\u00a0to qualify her daughter for Medicaid. At the time, she earned too much to get her on Medicaid without it.<\/p>\n But when the pandemic started, she had to stop working and stay home to care for her daughter, who suffers from, among other things,\u00a0disruptive mood dysregulation disorder<\/a>\u00a0\u2014 a condition that goes far beyond normal tween moodiness.<\/p>\n Treatment didn\u2019t require just medication or visits to the doctor or hospital; the girl needed wrap-around therapy that included in-home care. The child\u2019s unpredictable moods and violent tantrums made it impossible to send her to school, or for her mother to hire a sitter to care for her.<\/p>\n Once she stopped working, her income was low enough that, in fact, the whole family qualified for Medicaid, including her 9-year-old.<\/p>\n O\u2019Donnell, a registered nurse, could have made lots of bonus pay caring for covid-19 patients, but she continued to stay home. She took on a second mortgage for $22,000. She estimates at least $60,000 in lost wages a year.<\/p>\n O\u2019Donnell recently decided to start working again. But the added income means her family could lose Medicaid coverage, so she will have to reapply for the special waiver for her daughter. If she doesn\u2019t qualify, she may have to cut her income back to stay on Medicaid, she worries.<\/p>\n \u201cQualifying for Medicaid means essentially you\u2019re living right around the poverty level, which means I\u2019m not generating any sort of wealth, I\u2019m not saving for retirement or anything like that,\u201d said O\u2019Donnell.<\/p>\n Some desperate families go to even more extreme lengths to get mental health care covered by Medicaid. Some leave their children at hospitals, relinquishing custody, so they become wards of the state. Others simply forgo care altogether.<\/p>\n So, how much is this costing families across America? And how many are forgoing care? It\u2019s hard to know.<\/p>\n Lack of Data Keeps Struggling Families in the Shadows<\/strong><\/p>\n \u201cWe don\u2019t have real data,\u201d said Patrick Kennedy, a former member of Congress and founder of the Kennedy Forum, a mental health advocacy group. Across the board, he said, there\u2019s a lamentable lack of data when it comes to mental illness. \u201cWe don\u2019t track this. We have a hodgepodge of reporting that\u2019s not standardized.\u201d<\/p>\n That lack of data keeps many people in the shadows, Kennedy said. It makes it hard to hold insurers accountable for legal obligations<\/a> they have to pay for mental health care, or to argue for specific policy changes from regulators that oversee them. Kennedy said that problem should not fall on the shoulders of the many families who are too busy fighting to survive.<\/p>\n \u201cIf you\u2019re a family or someone who has one of these illnesses, you don\u2019t have the capacity for self-advocacy, right? And shame still factors in, in a large way,\u201d he said.<\/p>\n Rachel, the mother in Lansing, estimates Marcus\u2019 treatment costs topped a quarter-million dollars over the past two years alone. Nearly all that, Rachel said, was driven by care their insurance company declined to cover.<\/p>\n Over the years, Marcus underwent numerous neuropsychological tests, checking everything from intelligence and personality to trauma and motor skills to gauge the gaps in how he perceives the world. Each test cost several thousand dollars. Weekly therapy cost $120. Special schools, including a wilderness therapy program, cost thousands of dollars a month, and Rachel said insurance covered almost none of it.<\/p>\n The insurer cited various reasons: The wilderness therapy, even if it worked, was deemed too experimental. Other treatments weren\u2019t in-network. Even when Marcus became increasingly violent and a danger to himself and others, insurance agents repeatedly told Rachel that various types of inpatient or residential treatment programs and specialists recommended to her weren\u2019t covered because they were \u201cnot medically necessary\u201d or would require reauthorization within days.<\/p>\n Meanwhile, Marcus\u2019 problems at home were escalating. \u201cThere were times that I hid,\u201d Rachel said, voice breaking. \u201cI found hiding places so that my kid couldn\u2019t find me. He would hurt me. He would attack me, throw things at me, push me.\u201d<\/p>\n Faced with this do-or-die situation, Rachel and her husband decided to pay the costs of the care themselves and fight it out with insurance and lawyers later. For the past year, they\u2019ve spent $150,000 to send Marcus to his out-of-state school.<\/p>\n What About \u2018Mental Health Parity\u2019 in Reimbursement?<\/strong><\/p>\n That growing reliance on out-of-network care for mental health treatment is a national trend, despite various federal and state laws requiring insurers to cover services like addiction treatment on par with CT scans, surgeries, or cancer treatments. A 2019 report commissioned by the Mental Health Treatment and Research Institute<\/a> found those disparities getting markedly worse, especially among children, between 2013 and 2017 \u2014 effectively forcing more patients to seek behavioral health care outside their insurer\u2019s network.<\/p>\n AHIP, a health insurer trade group, said the industry complies with existing laws and is working to expand options to meet increased demand for mental health care.<\/p>\n \u201cGiven the workforce and capacity shortages in [mental health and substance use disorder] care, it\u2019s important that patients receive the appropriate level of care, helping to preserve higher levels of care for those who need it most,\u201d David Allen, an AHIP spokesperson, said in an emailed statement. He said insurers are taking measures like adding new providers to their networks, and adding telehealth options to expand their reach into places like schools and family physicians\u2019 offices<\/a>. But, he said, not every kind of care should qualify for coverage: \u201cIt is important to make sure that people receive high-quality care based on scientific evidence.\u201d<\/p>\n Regulators Have Been Slow to Police Insurers<\/strong><\/p>\n But Deborah Steinberg, a health policy lawyer at the Legal Action Center, which advocates for consumers, said insurers improperly deny coverage for appropriate treatments far too often. Few people know how to determine that, and end up paying the bill.<\/p>\n \u201cThey are actually not necessarily bills [patients and families] should be paying, because a lot of the time these are illegal practices,\u201d Steinberg said. \u201cThere are so many complicated laws here that people don\u2019t understand. And when people pay the bills or take it out as credit card debt, they\u2019re not challenging those practices.\u201d<\/p>\n Nor have regulators been aggressive in policing insurers, or fining them for violations.<\/p>\n That\u2019s something Ali Khawar pledges to change. Khawar, an acting assistant secretary at the Labor Department\u2019s Employee Benefits Security Administration, which oversees private insurers, said his agency\u2019s report to Congress earlier this year<\/a> showed high levels of violations. The report also showed the insurance industry failing to keep adequate data on their compliance with parity laws.<\/p>\n But, Khawar said, coverage of mental health care is a problem he hears about continually, and the fact that so many families are struggling has made this a top priority for his agency. \u201cThere is a level of attention, a level of resources being put to these issues that is kind of unprecedented,\u201d he said.<\/p>\n Often, it falls to attorneys general to enforce insurance rules, and the willingness and resources available to do so varies by state.<\/p>\n In Michigan, where attorney J.J. Conway practices, the state has not been active in investigating the industry, he said. So families must seek recourse on their own, he said, if they want to dispute denial of coverage<\/a> with their insurer. Conway, who represents Rachel\u2019s family and many other parents, said he\u2019s seeing the biggest surge in mental health disputes in his 25 years as a lawyer.<\/p>\n Conway said there\u2019s a strange silver lining in the sheer number of families now struggling to get mental health coverage. The cases are so numerous, he said, he hopes collectively they\u2019ll eventually force a change.<\/p>\n \u201cDiagnosis: Debt\u201d is a reporting partnership between KHN and NPR exploring the scale, impact, and causes of medical debt in America.<\/p>\n The series draws on the \u201cKFF Health Care Debt Survey<\/a>,\u201d a poll designed and analyzed by public opinion researchers at KFF in collaboration with KHN journalists and editors. The survey was conducted Feb. 25 through March 20, 2022, online and via telephone, in English and Spanish, among a nationally representative sample of 2,375 U.S. adults, including 1,292 adults with current health care debt and 382 adults who had health care debt in the past five years. The margin of sampling error is plus or minus 3 percentage points for the full sample and 3 percentage points for those with current debt. For results based on subgroups, the margin of sampling error may be higher.<\/p>\n Additional research was conducted by the Urban Institute<\/a>, which analyzed credit bureau and other demographic data on poverty, race, and health status to explore where medical debt is concentrated in the U.S. and what factors are associated with high debt levels.<\/p>\n The JPMorgan Chase Institute analyzed records<\/a> from a sampling of Chase credit card holders to look at how customers\u2019 balances may be affected by major medical expenses.<\/p>\n Reporters from KHN and NPR also conducted hundreds of interviews with patients across the country; spoke with physicians, health industry leaders, consumer advocates, debt lawyers, and researchers; and reviewed scores of studies and surveys about medical debt.<\/p>\n KHN<\/a> (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF<\/a> (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.<\/em><\/p>\nAbout This Project<\/h4>\n