Her mom calls her Princess, but her real name is Lindsey. She’s 17 and lives with her mom, Sandra, a nurse, outside Atlanta. On May 17, 2020, a Sunday, Lindsey decided she didn’t want breakfast; she wanted Doritos. So she left home and walked to Family Dollar, taking her pants off on the way, while her mom followed on foot, talking to the police on her phone as they went.

Lindsey has autism. It can be hard for her to communicate and navigate social situations. She thrives on routine and gets special help at school. Or got help, before the coronavirus pandemic closed schools and forced tens of millions of children to stay home. Sandra said that’s when their living hell started.

“It’s like her brain was wired,” she said. “She’d just put on her jacket, and she’s out the door. And I’m chasing her.”

On May 17, Sandra chased her all the way to Family Dollar. Hours later, Lindsey was in jail, charged with assaulting her mom. (KHN and NPR are not using the family’s last name.)

Lindsey is one of almost  in the U.S. who have a serious emotional or behavioral health condition. When the pandemic forced schools and doctors’ offices to close last spring, it also cut children off from the trained teachers and therapists who understand their needs.

As a result, many, like Lindsey, spiraled into emergency rooms and even police custody. Federal data shows  of kids in mental health crisis during the pandemic — a surge that’s further taxing an already overstretched safety net.

‘Take Her’

Even after schools closed, Lindsey continued to wake up early, get dressed and wait for the bus. When she realized it had stopped coming, Sandra said, her daughter just started walking out of the house, wandering, a few times a week.

In those situations, Sandra did what many families in crisis report they’ve had to do since the pandemic began: race through the short list of places she could call for help.

First, her state’s mental health crisis hotline. But they often put Sandra on hold.

“This is ridiculous,” she said of the wait. “It’s supposed to be a crisis team. But I’m on hold for 40, 50 minutes. And by the time you get on the phone, [the crisis] is done!”

Then there’s the local hospital’s emergency room, but Sandra said she had taken Lindsey there for previous crises and been told there isn’t much they can do.

That’s why, on May 17, when Lindsey walked to Family Dollar in just a red T-shirt and underwear to get that bag of Doritos, Sandra called the last option on her list: the police.

Sandra arrived at the store before the police and paid for the chips. According to Sandra and police records, when an officer approached, Lindsey grew agitated and hit her mom on the back, hard.

Sandra said she explained to the officer: “‘She’s autistic. You know, I’m OK. I’m a nurse. I just need to take her home and give her her medication.'”

Lindsey takes a mood stabilizer, but because she left home before breakfast, she hadn’t taken it that morning. The officer asked if Sandra wanted to take her to the nearest hospital.

The hospital wouldn’t be able to help Lindsey, Sandra said. It hadn’t before. “They already told me, ‘Ma’am, there’s nothing we can do.’ They just check her labs, it’s fine, and they ship her back home. There’s nothing [the hospital] can do,” she recalled telling the officer.

Sandra asked if the police could drive her daughter home so the teen could take her medication, but the officer said no, they couldn’t. The only other thing they could do, the officer said, was take Lindsey to jail for hitting her mom.

“I’ve tried everything,” Sandra said, exasperated. She paced the parking lot, feeling hopeless, sad and out of options. Finally, in tears, she told the officers, “Take her.”

Lindsey does not like to be touched and fought back when authorities tried to handcuff her. Several officers wrestled her to the ground. At that point, Sandra protested and said an officer threatened to arrest her, too, if she didn’t back away. Lindsey was taken to jail, where she spent much of the night until Sandra was able to post bail.

Clayton County Solicitor-General Charles Brooks denied that Sandra was threatened with arrest and said that while Lindsey’s case is still pending, his office “is working to ensure that the resolution in this matter involves a plan for medication compliance and not punitive action.”

Sandra isn’t alone in her experience. Multiple families interviewed for this story reported similar experiences of calling in the police when a child was in crisis because caretakers didn’t feel they had any other option.

‘The Whole System Is Really Grinding to a Halt’

Roughly  ages 6 through 17 are living with serious emotional or behavioral difficulties, including children with autism, severe anxiety, depression and trauma-related mental health conditions.

Many of these children depend on schools for access to vital therapies. When schools and doctors’ offices stopped providing in-person services last spring, kids were untethered from the people and supports they rely on.

“The lack of in-person services is really detrimental,” said , a pediatrician and professor of emergency medicine at Brown University.

Marjorie, a mother in Florida, said her 15-year-old son has suffered during these disruptions. He has attention deficit hyperactivity disorder and oppositional defiant disorder, a condition marked by frequent and persistent hostility. Little things — like being asked to do schoolwork — can send him into a rage, leading to holes punched in walls, broken doors and violent threats. (Marjorie asked that we not use the family’s last name or her son’s first name to protect her son’s privacy and future prospects.)

The pandemic has shifted both school and her son’s therapy sessions online. But Marjorie said virtual therapy isn’t working because her son doesn’t focus well during sessions and tries to watch TV instead. Lately, she has simply been canceling them.

“I was paying for appointments and there was no therapeutic value,” Marjorie said.

The issues cut across socioeconomic lines — affecting families with private insurance, like Marjorie, as well as those who receive coverage through Medicaid, a federal-state program that provides health insurance to low-income people and those with disabilities.

In the first few months of the pandemic, between March and May, children on Medicaid received  fewer outpatient mental health services — including therapy and in-home support — compared to the same time period in 2019, according to the Centers for Medicare & Medicaid Services. That’s even after accounting for increased telehealth appointments.

And while the nation’s ERs have seen a decline in overall visits, there was a relative increase in mental health visits for kids in 2020 compared with 2019.

The Centers for Disease Control and Prevention found that, from April to October last year, hospitals across the U.S. saw a  in the proportion of mental health emergency visits for children ages 5 to 11, and a 31% increase for children ages 12 to 17.

“Proportionally, the number of mental health visits is far more significant than it has been in the past,” said Duffy. “Not only are we seeing more children, more children are being admitted” to inpatient care.

That’s because there are fewer outpatient services now available to children, she said, and because the conditions of the children showing up at ERs “are more serious.”

This crisis is not only making life harder for these kids and their families, but it’s also stressing the entire health care system.

Child and adolescent psychiatrists working in hospitals around the country said children are increasingly “boarding” in emergency departments for days, waiting for inpatient admission to a regular hospital or psychiatric hospital.

Before the pandemic, there was already a  for children, said , a child psychiatrist at Judge Baker Children’s Center in Boston. That shortage has only gotten worse as hospitals cut capacity to allow for more physical distancing within psychiatric units.

“The whole system is really grinding to a halt at a time when we have unprecedented need,” Bellonci said.

‘A Signal That the Rest of Your System Doesn’t Work’

Psychiatrists on the front lines share the frustrations of parents struggling to find help for their children.

Part of the problem is there have never been enough psychiatrists and therapists trained to work with children, intervening in the early stages of their illness, said , a child psychiatrist at New York University.

“Tons of people showing up in emergency rooms in bad shape is a signal that the rest of your system doesn’t work,” she said.

Too often, Havens said, services aren’t available until children are older — and in crisis. “Often for people who don’t have access to services, we wait until they’re too big to be managed.”

While the pandemic has made life harder for Marjorie and her son in Florida, she said it has always been difficult to find the support and care he needs. Last fall, he needed a psychiatric evaluation, but the nearest specialist who would accept her commercial insurance was 100 miles away, in Alabama.

“Even when you have the money or you have the insurance, it is still a travesty,” Marjorie said. “You cannot get help for these kids.”

Parents are frustrated, and so are psychiatrists on the front lines. , who leads the psychiatric crisis department at Nationwide Children’s Hospital in Columbus, Ohio, said that once a child is stabilized after a crisis it can be hard to explain to parents that they may not be able to find follow-up care anywhere near their home.

“Especially when I can clearly tell you I know exactly what you need, I just can’t give it to you,” Glawe said. “It’s demoralizing.”

When states and communities fail to provide children the services they need to live at home, kids can deteriorate and even wind up in jail, like Lindsey. At that point, Glawe said, the cost and level of care required will be even higher, whether that’s hospitalization or long stays in residential treatment facilities.

That’s exactly the scenario Sandra, Lindsey’s mom, is hoping to avoid for her Princess.

“For me, as a nurse and as a provider, that will be the last thing for my daughter,” she said. “It’s like [state and local leaders] leave it to the school and the parent to deal with, and they don’t care. And that’s the problem. It’s sad because, if I’m not here …”

Her voice trailed off as tears welled.

“She didn’t ask to have autism.”

To help families like Sandra’s and Marjorie’s, advocates said, all levels of government need to invest in creating a mental health system that’s accessible to anyone who needs it.

But given that many states have seen their  due to the pandemic, there’s a concern services will instead be cut — at a time when the need has never been greater.

This story is part of a reporting partnership that includes , and .

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He did not.

What he got instead from those town halls last month was encouragement to return to class at the institution affectionately known as Mizzou. The university, in Columbia, would be testing only people with symptoms, and at that point, the university said people who test positive off campus to inform the school.

“It feels like the university doesn’t really care whether we get sick or not,” said El-Jayyousi, who is scheduled for two in-person classes, and lives at home with his parents and 90-year-old grandmother.

He’s seen the studies from researchers at Yale and Harvard that suggest testing needs to be much more widespread. He asked his instructors if he could join lectures remotely once classes begin Monday. One was considering it; the other rejected it.

“It was kind of very dismissive, like ‘so what?’” El-Jayyousi said.

But it’s an enormous “so what?” packed with fear and unknowns for Jayyousi and some 20 million other students enrolled in some level of postsecondary education in America, if they are not already online only.

As with the uncoordinated and chaotic national response to the COVID-19 pandemic, higher education has no clear guidance or set of standards to adhere to from the federal government or anywhere else. Policies for reentry onto campuses that were abruptly shut in March are all over the map.

Hundreds Undecided

According to the , or C2i, a project of Davidson College that monitors how higher ed is responding to the pandemic, there is nothing resembling a common approach. Of 2,958 institutions it follows, 151 were planning to open fully online, 729 were mostly online and 433 were taking a hybrid approach. Just 75 schools were insisting on students attending fully in person, and 614 were aiming to be primarily in-person. Some 800 others were still deciding, just weeks before instruction was to start.

The decisions often have little correlation with the public health advisories in the region. Mizzou, which is in an area with recent COVID spikes, is holding some in-person instruction and has nearly 7,000 students signed up to live in dorms and other university-owned housing. Harvard, in a region with extremely low rates of viral spread, has opted to go all online and allowed students to defer a year.

The specific circumstances colleges and universities face are as much determined by local fiscal and political dictates as by medicine and epidemiology. It is often unclear who is making the call. So it’s every-student-for-herself to chart these unknown waters, even as students (or their families) have written tuition checks for tens of thousands of dollars and signed leases for campus and off-campus housing.

And the risks — health, educational and financial — boomerang back on individual students: Two weeks after University of North Carolina students, as instructed, returned to the flagship campus in Chapel Hill with the promise of at least some in-person learning, all classes went online. Early outbreaks surged from a few students to more than 130 in a matter of days. Most undergrads have about a week to clear out of their dorms.

“It’s really tough,” said neuroscience major Luke Lawless, 20. “Chapel Hill is an amazing place, and as a senior it’s tough to know that my time’s running out — and the virus only adds to that.”

Location, Location, Location

C2i’s creator, Davidson education Assistant Professor , said the extreme diversity of approaches comes from the sheer diversity of schools, the penchant of many to follow the leads of more prestigious peers, and local politics.

“Some states have very strong and stringent mask requirements. Some have stronger stay-at-home orders. Others are sort of leaving it up to localities. So the confluence of politics, institutional isomorphism — that imitation — and different needs that the institutions have are driving the differences,” Marsicano said.

Location matters a lot, too, Marsicano said, pointing to schools like George Washington University and Boston University in urban settings where the environment is beyond the control of the school, versus a place like the University of the South in remote, rural Sewanee, Tennessee, where 90% of students will return to campus.

“It’s a lot easier to control an outbreak if you are a fairly isolated college campus than if you are in the middle of a city,” Marsicano said.

Student behavior is another wild card, Marsicano said, since even the best plans will fail if college kids “do something stupid, like have a massive frat party without masks.”

“You’ve got student affairs professionals across the country who are screaming at the top of their lungs, ‘We can’t control student behavior when they go off campus’” Marsicano said.

Another factor is a vacuum at the federal level. Although the Department of Education says Secretary Betsy DeVos has held dozens of calls with governors and state education superintendents, there’s no sign of an attempt to offer unified guidance to colleges beyond that links to relaxed regulatory requirements and anodyne fact sheets from the Centers for Disease Control and Prevention on preventing viral spread.

Even the money that the department notes it has dispensed — $30 billion from Congress’ CARES Act — is weighted toward K-12 schools, with about $13 billion for higher education, including student aid.

The U.S. Senate adjourned last week until Sept. 8, having never taken up a House-passed relief package that included some $30 billion for higher education. A trio of Democratic senators, including Sen. Elizabeth Warren, standards on college campuses.

No Benchmarks

Campus communities with very different levels of contagion are making opposite calls about in-person learning. Mizzou’s Boone County has seen more than 1,400 confirmed COVID cases after a spike in mid-July. According to the Harvard Global Health Institute’s COVID risk map, Boone has accelerated spread, with 14 infections per day per 100,000 people. The institute advises stay-at-home orders or rigorous testing and tracing at such rates of infection. Two neighboring counties were in the red zone recently, with more than 25 cases per day per 100,000 people. Mizzou has left it up to deans whether classes will meet in person, making a strong argument for face-to-face instruction.

Meanwhile, Columbia University in New York City opted for all online instruction, even though the rate of infection there is a comparatively low 3.8 cases per day per 100,000 people.

Administrators at Mizzou considered and rejected mandatory testing. “All that does is provide one a snapshot of the situation,” University of Missouri system President Mun Choi said in one of the town halls.

Mizzou has an in-house team that will carry out case investigation and contact tracing with the local health department. This week, following questions from the press and pressure from the public, the university announced any positive COVID test to the school.

Who Do You Test? When?

CDC guidance for higher education suggests there’s not enough data to know whether testing everyone is effective, but some influential researchers, such as those at Harvard and Yale, disagree.

“This virus is subject to silent spreading and asymptomatic spreading, and it’s very hard to play catch-up,” said Yale professor , who studies public health policy. “And so thinking that you can keep your campus safe by simply waiting until students develop symptoms before acting, I think, is a very dangerous game.”

conducted by Paltiel and his colleagues show that, of all the factors university administrators can control — including the sensitivity and specificity of COVID-19 tests — the frequency of testing is most important.

He’s “painfully aware” that testing everyone on campus every few days sets a very high bar — logistically, financially, behaviorally — that may be beyond what most schools can reach. But he says the consequences of reopening campuses without those measures are severe, not just for students, but for vulnerable populations among school workers and in the surrounding community.

“You really have to ask yourself whether you have any business reopening if you’re not going to commit to an aggressive program of high-frequency testing,” he said.

The Fighting — And Testing — Illini

Some institutions that desperately want students to return to campus are backing the goal with a maximal approach to safety and testing.

About a four-hour drive east along the interstates from Mizzou is the University of Illinois at Urbana-Champaign, whose sports teams are known as the Fighting Illini.

Weeks ago, large white tents with signs reading “Walk-Up COVID-19 Testing” have popped up across campus; there students take a simple saliva test.

“This seems to be a lot easier than sticking a cotton swab up your nose,” graduate student Kristen Muñoz said after collecting a bit of her saliva in a plastic tube and sealing it in a bag labeled “Biohazard.”

In just a few hours, she got back her result: negative.

The school plans to offer free tests to the 50,000 students expected to return this month, as well as some 11,000 faculty and staff members.

“The exciting thing is, because we can test up to 10,000 per day, it allows the scientist to do what’s really the best for trying to protect the community as opposed to having to cut corners, because of the limitations of the testing,” said University of Illinois chemist , who helped develop the , which received emergency use authorization from the federal Food and Drug Administration this week.

The test is similar to one designed by Yale and funded by the NBA that cleared the FDA hurdle just before the Illinois test. Both Yale and Illinois hope aggressive testing will allow most undergraduate students to live on campus, even though most classes will be online.

University of Illinois epidemiologist said they are following data that suggest campuses need to test everyone every few days because the virus is not detectable in infected people for three or four days.

“But about two days after that, your infectiousness peaks,” she said. “So, we have a very small window of time in which to catch people before they have done most of the infection that they’re going to be doing.”

Campus officials accepted Smith’s recommendation that all faculty, staffers and students participating in any on-campus activities be required to get tested twice a week.

Illinois can do that because its test is convenient and not invasive, which spares the campus from using as much personal protective equipment as the more invasive tests require, Burke said. And on-site analysis avoids backlogs at public health and commercial labs.

Muddled in the Middle

Most other colleges fall somewhere between the approaches of Mizzou and the University of Illinois, and many of their students still are uncertain how their fall semester will go.

At the University of Southern California, a private campus of about 48,500 students in Los Angeles, officials had hoped to have about 20% of classes in person — but the county government , insisting on for reopening than the statewide standards.

If students eventually are allowed back, they will have to show a recent coronavirus test result that they obtained on their own, said Dr. Sarah Van Orman, chief health officer of USC Student Health.

They will be asked to do daily health assessments, such as fever checks, and those who have been exposed to the virus or show symptoms will receive a rapid test, with about a 24-hour turnaround through the university medical center’s lab. “We believe it is really important to have very rapid access to those results,” Van Orman said.

At California State University — the nation’s largest four-year system, with 23 campuses and nearly a half-million students — officials decided to move nearly all its fall courses online.

“The first priority was really the health and safety of all of the campus community,” said Mike Uhlenkamp, spokesperson for the CSU Chancellor’s Office. About 10% of CSU students are expected to attend some in-person classes, such as nursing lab courses, fine art and dance classes, and some graduate classes.

Uhlenkamp said testing protocols are being left up to each campus, though all are required to follow local safety guidelines. And without a medical campus in the system, CSU campuses do not have the same capacity to take charge of their own testing, as the University of Illinois is doing.

For students who know they won’t be on campus this fall, there is regret at lost social experiences, networking and hands-on learning so important to college.

But the certainty also brings relief.

“I don’t think I would want to be indoors with a group of, you know, even just a handful of people, even if we have masks on,” said Haley Gray, a 28-year-old graduate student at the University of California-Berkeley starting the second year of her journalism program.

She knows she won’t have access to Berkeley’s advanced media labs or the collaborative sessions students experience there. And she said she realized the other day she probably won’t just sit around the student lounge and strike up unexpected friendships.

“That’s a pretty big bummer but, you know, I think overall we’re all just doing our best, and given the circumstances, I feel pretty OK about it,” she said.

This story is part of a partnership that includes , , , and Kaiser Health News.

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During six weeks on life support at Northwestern Memorial Hospital in Chicago, Ramirez said, she had terrifying nightmares that she couldn’t distinguish from reality.

“Most of them involve me drowning,” she said. “I attribute that to me not being able to breathe, and struggling to breathe.”

On June 5, Ramirez, 28, became the to undergo a double lung transplant. She is strong enough now to begin sharing the story of her ordeal.

Mysterious Exposure

Before the pandemic, Ramirez worked as a paralegal for an immigration law firm in Chicago. She enjoyed walking her dogs and running 5K races.

Ramirez had been working from home since mid-March, hardly leaving the house, so she has no idea how she contracted the coronavirus. In late April, she started experiencing chronic spasms, diarrhea, loss of taste and smell, and a slight fever.

“I felt very fatigued,” Ramirez said. “I wasn’t able to walk long distances without falling over. And that’s when I decided to go into the emergency room.”

From the ER to a Ventilator

The staff at Northwestern checked her vitals and found her oxygen levels were extremely low. She was given 10 minutes to explain her situation over the phone to her mother in North Carolina and appoint her to make medical decisions on her behalf.

Ramirez knew she was about to be placed on a ventilator, but she didn’t understand exactly what that meant.

“In Spanish, the word ‘ventilator’ — ventilador — is ‘fan,’ so I thought, ‘Oh, they’re just gonna blow some air into me and I’ll be OK. Maybe have a three-day stay, and then I’ll be right out.’ So I wasn’t very worried,” Ramirez said.

In fact, she would spend the next six weeks heavily sedated on that ventilator and another machine — known as ECMO, or extracorporeal membrane oxygenation — pumping and oxygenating her blood outside of her body.

One theory about why Ramirez became so sick is that she has a that is treated with steroids, drugs that can suppress the immune system.

By early June, Ramirez was at risk of further decline. She began showing signs that her kidneys and liver were starting to fail, with no improvement in her lung function. Her family was told she might not make it through the night, so her mother and sisters caught the first flight from North Carolina to Chicago to say goodbye.

When they arrived, the doctors told Ramirez’s mother, Nohemi Romero, that there was one last thing they could try.

Ramirez was a candidate for a double lung transplant, they said, although the procedure had never been done on a COVID patient in the U.S. Her mother agreed, and within 48 hours of being listed for transplant, a donor was found and the successful procedure was performed on June 5.

At a recent news conference held by Northwestern Memorial, Romero shared in Spanish that there were no words to describe the pain of not being by her daughter’s side as she struggled for her life.

She thanked God all went well, and for giving her the strength to make it through.

‘I Just Felt Like a Vegetable’

, Northwestern Medicine’s chief of thoracic surgery, performed the 10-hour procedure.

“Most patients are quite sick going into [a] lung transplant,” Bharat in June. “But she was so sick. In fact, I can say without hesitation, the sickest patient I ever transplanted.”

Bharat said most COVID-19 patients will not be candidates for transplants because of their age and other health conditions that decrease the likelihood of success. And that up to half of COVID patients on ventilators survive the illness and are likely to recover on their own.

But for some, like Ramirez, Bharat said, a transplant can be a lifesaving option of last resort.

When Ramirez woke up after the operation, she was disoriented, could barely move her body and couldn’t speak.

“I just felt like a vegetable. It was frustrating, but at the time I didn’t have the cognitive ability to process what was going on,” Ramirez said.

She recalled being sad that her mother wasn’t with her in the hospital, not understanding that visitors weren’t allowed because of the pandemic.

Her family had sent photos to post by her hospital bed, and Ramirez said she couldn’t recognize anyone in the pictures.

“I was actually sort of upset about it, [thinking,] ‘Who are these strangers and why are their pictures in my room?’” Ramirez said. “It was weeks later, actually, that I took a second look and realized, ‘Hey, that’s my grandmother. That’s my mom and my siblings. And that’s me.”

After a few weeks, Ramirez said, she finally understood what happened to her. When COVID-19 restrictions loosened at the hospital in mid-June, her mother was finally able to visit.

“The first thing I did was just tear up,” Ramirez said. “I was overjoyed to see her.”

The Long Road to Recovery

After weeks of inpatient rehabilitation, Ramirez was discharged home. She’s now receiving in-home nursing assistance as well as physical and occupational therapy, and she’s working on finding a psychologist.

Ramirez eagerly looks forward to being able to spend more time with her family, her boyfriend and her dogs and serving the immigrant community through her legal work.

But for now, her days are consumed by rehab. Her doctors say it will be at least a year before she can function independently and be as active as before.

Ramirez is slowly regaining strength and learning how to breathe with her new lungs.

She takes 17 prescription medicines, some of them several times a day, including medicines to prevent her body from rejecting the new lungs. She also takes anxiety meds and antidepressants to help her cope with daily nightmares and panic attacks.

The long-term physical and mental health tolls on Ramirez and other COVID-19 survivors remain largely unknown, since the virus is so new.

While most people who contract the virus are left seemingly unscathed, for some patients, like Ramirez, the road to recovery is full of uncertainty, said , a physician-scientist at the Columbia University Mailman School of Public Health.

Some patients can experience post-intensive care syndrome, or PICS, which can consist of depression, memory issues and other cognitive and mental health problems, Hornig said. Under normal circumstances, ICU visits from loved ones are encouraged, she said, because the human interaction can be protective.

“That type of contact would normally keep people oriented … so that it doesn’t become as traumatic,” Hornig said.

Hopes for the Future

COVID-19 has , as Latinos are overrepresented in jobs that expose them to the virus and have lower rates of health insurance and other social protections.

Ramirez has health insurance, although that hasn’t spared her from tens and thousands of dollars’ worth of medical bills.

And even though she still ended up getting COVID-19, she counts herself lucky for having a job that allowed her to work from home when the pandemic struck. Many Latino workers don’t have that luxury, she said, so they’re forced to risk their lives doing low-wage jobs deemed essential at this time.

Ramirez’s mother is a breast cancer survivor, making her particularly vulnerable to COVID-19. She had been working at a meatpacking plant in North Carolina, for a company that Ramirez said has had hundreds of COVID-19 cases among employees.

So Ramirez is relieved to have her mom in Chicago, helping take care of her.

“I’m glad this is taking her away from her position,” Ramirez said.

Friends and family in North Carolina have been fundraising to help pay her medical bills, selling raffle tickets and setting up a on her behalf. Ramirez is also applying for financial assistance from the hospital.

Her experience with COVID-19 has not changed who she is as a person, she said, and she looks forward to living her life to the fullest.

If she ever gets the chance to speak with the family of the person whose lungs she now has, she said, she will thank them “for raising such a healthy child and a caring person [who] was kind enough to become an organ donor.”

Her life may never be the same, but that doesn’t mean she won’t try. She laughs as she explains how she asked her surgeon to take her skydiving someday.

“Dr. Bharat actually used to work at a skydiving company when he was younger,” Ramirez said. “And so he promised me that, hopefully within a year, he could get me there.”

And she has every intention of holding him to that promise.

This story is part of a reporting partnership that includes Illinois Public Media, Side Effects Public Media, NPR and KHN.

This <a target="_blank" href="/news/covid-double-lung-transplant-survivor-tells-her-story/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

Five kids still live at home, and all of them came to the Austins through the foster care system. All told, they see 14 doctors.

Many states promise to provide health care to help foster and adoptive families keep kids healthy, but recently in Illinois, thousands of children temporarily lost coverage when the state switched their health plans. Some of Rebecca and Bruce’s children got caught in the coverage gap, which has the Austins wondering whether the state will fulfill its end of the bargain.

Three of the Austins’ children see psychiatrists. One has regular visits with specialists for epilepsy and other health conditions. Another has therapy four times a week for movement and speech delays.

“A typical day is pretty crazy,” Rebecca Austin said in an interview before the coronavirus shelter-in-place orders were issued. “I say I’m a stay-at-home mom, but with all the doctors’ appointments and therapies and appointments and stuff, I’m on the go all the time.”

Their lives are full and busy already, and Austin is concerned Illinois’ health plan change will make juggling health care even more of a challenge.

The Austins live in Windsor, a rural town about 25 miles from the nearest hospital in Charleston, Illinois.

Since February, the state has been moving all current and former foster children covered by Medicaid into health plans provided by private insurers that contract with the state.

It’s a change to what’s known as . The shift has many families like the Austins concerned, because the initial phase of the rollout was rocky and because it’s not clear whether familiar, nearby health care providers will be designated as in-network.

More States Move To Managed Care 

already use managed-care companies to run their Medicaid health plans, which means state agencies pay insurance companies to provide health care to people in the Medicaid program.

Proponents of the managed-care model say it can lower costs while increasing access to care.

States that switch to managed care often find their budgets become more predictable, because they no longer pay providers for each service. Instead, they pay insurers a set amount per enrollee for all health care needs.

But Michael Sparer, a health policy professor at Columbia University in New York City, said as to whether managed care lowers costs and increases access to care. Success depends on whether states hold insurers to their promises to maintain an adequate provider network, he said.

“ refers to a health plan’s ability to deliver the benefits promised by providing reasonable access to enough in-network primary care and specialty physicians, and all health care services included under the terms of the contract,” according to the National Association of Insurance Commissioners.

Sparer said success with Medicaid managed care also hinges on whether states “have the ability and have the oversight that’s required to make sure that the program works effectively.”

In recent years, Illinois switched most of the state’s Medicaid enrollees into . Former foster children moved onto those plans on Feb. 1, and current foster children are set to eventually join them. The switch was initially planned for April 1, but the state has postponed the move for at least 30 days, citing the COVID-19 pandemic.

whether the move is in the children’s best interests.

Many foster children have serious physical and mental health needs, and the switch could disrupt long-standing relationships with therapists and other providers, critics of managed care argue.

For thousands of families like the Austins, this means figuring out whether their children’s providers will still be in-network or whether they’ll have to use new doctors, who might be farther from home.

Austin said her family found a managed-care plan that allowed them to keep most of their children’s providers. But when the February switch was finalized, the Austin children were among the 2,500 former foster kids whose health coverage was interrupted.

The “end date” for her kids’ coverage had been incorrectly listed in the computer system as Jan. 31 — one day prior to the coverage start date, Feb. 1, Rebecca said. This effectively left them without insurance. State officials blamed a glitch in the system for the error.

John Hoffman, a spokesman for the Illinois Department of Healthcare and Family Services, said in a statement that the agency worked with managed-care organizations “immediately to correct the error, resolving it within days.”

For the Austins, the error meant they had to cancel appointments and had problems getting prescriptions filled.

“My daughter who has epilepsy, her medicine was … a little over $1,000,” Austin said. “I didn’t have $1,045 to pay her for the medicine and, so, we were in a panic as to what to do because she had to have the medicine.”

Phone calls to pharmacies and insurers were onerous, she said, but she ultimately resolved the issue. Still, the Austins’ youngest, 4-year-old Camdyn, missed two weeks of therapy sessions, while they waited for the new insurer to approve them. Austin worries these delays will slow his progress.

Making Medicaid Managed Care Work

Heidi Dalenberg is an attorney with the , which serves as a watchdog for the state’s child welfare agency. She said managed care can be beneficial, helping ensure all kids get regular well-checks and prevent doctors from overtreating or overmedicating children.

But those benefits will be realized only if the state has prepared for the transition and holds insurance companies to their contract requirements, she said. That includes ensuring managed-care organizations, or MCOs, have appropriate provider networks so children have access to doctors close to home.

“When it doesn’t work is when you have an MCO that is more worried about cutting costs and denying approvals for care than they are in making sure that kids get what they need,” Dalenberg said.

A retired federal judge is monitoring Illinois’ efforts to ensure foster children don’t lose access to care in the switch to Medicaid managed care, Dalenberg said.

Hoffman, the state DHS spokesman, said the switch to managed care, provided by the insurer YouthCare Illinois, will help improve health care for current and former foster children by coordinating and providing services.

“Right now, when a family needs a provider for their child, they’re left to navigate a complex system alone,” Hoffman said in a statement. “With YouthCare, families have a personal care coordinator who helps manage their overall care, researches providers and schedules appointments.”

He said the problems caused by February’s glitch have been resolved and will not resurface when 17,000 current foster children eventually get switched into managed-care plans as well.

The Austins’ foster daughter will be among them. And Austin worries her daughter will be forced to switch to a therapist an hour’s drive away, since the one she sees nearby is not in the managed-care network.

“She has established a relationship with that counselor. She’s been going there for almost two years and now we have to start all over again,” Austin said. “And that’s trauma. That’s a huge trauma.”

Illinois said even providers that are not in-network when the switch goes into effect can be paid for services during a six-month “continuity of care” period, and insurers will try to expand their networks during that time.

The Austins are trying to be optimistic, but the state’s track record doesn’t give them much assurance.

This story is part of a partnership that includes , Illinois Public Media,  and Kaiser Health News.

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Nothing Jenn and Jason learned in parenting class prepared them for the challenges they’ve faced raising a child prone to violent outbursts.

The couple are parents to two siblings. They first fostered the children as toddlers and later adopted them. (KHN has agreed not to use the children’s names or the couple’s last names because of the sensitive nature of the family’s story.)

In some ways, the family seems like many others. Jenn and Jason’s 12-year-old daughter is into pop star Taylor Swift and loves playing outside with her older brother. He’s 15, and his hobbies include running track and drawing pictures of superheroes. The family lives on a quiet street in central Illinois, with three cats and a rescued pit bull named Sailor.

Jenn described their teenage son as a “kind, funny and smart kid,” most of the time.

But starting when he was around 3 or 4 years old, even the smallest things — like being told to put on his swimsuit when he wanted to go to the pool — could set off an hours-long rage.

“In his room, his dresser would be pushed across the other side of the room,” Jason said. “His bed would be flipped up on the side. So, I mean, very violent. We’ve always said it was kind of like a light switch: It clicked on and clicked off.”

Jenn and Jason said their son’s behavior has gotten more dangerous as he has gotten older. Today he’s 6 feet tall — bigger than both of his parents.

Jenn said most of the time her son directs his initial anger and aggression toward her. But when the 15-year-old has threatened to hit her, and Jason has intervened, the teen has hit his father or thrown things at him.

“The way he will look at me is just evil,” Jenn said. “He has threatened to slap me in the face. He’s called me all sorts of horrible names. After an incident like that, it’s hard to go to sleep, thinking, ‘Is he going to come in and attack us while we’re sleeping?'”

People who are victims of domestic violence are advised to seek help. But when the abuse comes from your own child, some parents have said there is a lack of support, understanding and effective interventions to keep the family safe.

While research is limited, a of the literature found child-on-parent violence is likely a major problem that’s underreported.

Jenn said she’s concerned about everyone’s safety and worries about her 12-year-old daughter being exposed to recurrent violence in their home.

The stress has taken a significant mental and emotional toll on Jenn. She sees a therapist to cope with the violence at home and to deal with her anxiety.

“There are days when it’s hard to breathe,” Jenn said. “You just feel it in your chest — like, I need a breath of air, I’m drowning. We say to each other all the time, ‘This is insanity. How can we live like this? This is out of control.'”

Blamed And Shamed Into Silence

It’s hard to know exactly how common Jenn and Jason’s experience is, since research is sparse. In one nationally representative of roughly 600 U.S. families, about 1 in 11 reported at least one incident of an adolescent child acting violently toward a parent in the previous year. In about a third of those cases, the violence was severe — ranging from punching, kicking or biting to the use of a knife or gun.

Other more recent estimates of the prevalence of child-on-parent violence range of families, which means several million U.S. families could be affected.

A 2008 by the U.S. Justice Department found that while most domestic assault offenders are adults, about 1 in 12 who come to the attention of law enforcement are minors. In half of those cases, the victim was a parent, most often the mother.

who are abused or witness domestic violence do not go on to become violent themselves, and while most people with mental illness are , those life experiences have been identified as risk factors for children who abuse their parents.

is a clinical social worker in the Seattle area who has worked with hundreds of families dealing with a violent child. Along with her colleague Gregory Routt, she developed a family violence intervention program for the juvenile court in King County, Wash., called .

Anderson said, in her experience, many parents feel ashamed about their situation.

“They don’t want to tell their friends or their family members,” Anderson said. “They do feel a lot of self-blame around it: ‘I should be able to handle my child. I should be able to control this behavior.'”

Anderson said many of the incidents take place at home, where the assaults are hidden from the public eye. That contributes to the lack of public awareness about the issue and makes it even harder for affected parents to find support.

“The whole issue becomes perceived as being the parent’s problem and the parent is to blame for the youth’s behavior,” Anderson said. “I think the main issue is that we need to talk about this. We need to talk — be willing to put it out there and make it an important issue and bring resources together for it.”

Unpredictable Anger

Jenn said that she has talked to her son’s therapists about why he has such trouble regulating his emotions, and they’ve told her it could be linked to the severe trauma he experienced as a baby and toddler.

When the couple began fostering the siblings in late 2007, the boy was 3 and his sister younger than 1. They had been removed from the home of their birth parents, where police were regularly called for drug and domestic violence issues. Jenn said her son remembers being beaten by men in his home and watching as his biological mom cut herself.

Jenn and Jason started their son in therapy at a young age, and he has been diagnosed with , PTSD, attention deficit hyperactivity disorder and autism.

The teen has attended art therapy and equine therapy regularly for years. He also participated in a mentorship program and attended a school designed for children with behavioral health needs. Jenn and Jason participated in family therapy sessions with their son, where they learned coping skills and practiced de-escalating situations at home.

The teen was also prescribed medication to help regulate his emotions.

Jenn said her son enjoyed going to therapy and seemed to be making some progress, but his anger remained unpredictable.

During the worst of the conflicts, the teen has kicked holes in walls and broken appliances. He has attempted to run away from home and created weapons to try to hurt his parents and himself. In recent years, Jenn and Jason have had to call police to their house about once a month to get help restraining their son. They’ve also sometimes had to have him admitted to the hospital for brief psychiatric stays.

‘Seems Like It’s Not Enough’

Keri Williams is a writer in North Carolina who advocates for parents raising children who have trauma-related behavioral issues, including attachment disorders that can manifest as intentional violence directed toward parents.

Williams’ own son became so violent that her family had to place him in a residential facility at age 10. He’s now 18.

“I actually thought I was the only person going through it,” Williams said. “I had no idea that this was actually a larger issue than myself.”

Williams manages a and where parents like herself — who feel isolated and unsure of where to turn — can find others who can relate.

Many parents she meets online struggle to accept that they’re dealing with a serious domestic violence issue, she said.

“You just don’t want to think like that,” Williams said. “That’s just not how our culture is and how parents perceive things. And that denial actually is what keeps parents from getting their kids help.”

Jenn — the mother of the 15-year-old in Illinois — said parenting her son often feels like being stuck in an abusive relationship.

“But it’s different when it’s your son,” she said. “I don’t have a choice. I can’t just, you know, shove him away or break up with him.”

Jenn said anytime she sees a news story about a child who has killed a parent, she worries. Such events are extremely rare, and Jenn doesn’t want to think her son is capable of that.

“But, unfortunately, the reality is, when he is in those rages and in those meltdowns, he really isn’t thinking straight, and he’s very impulsive,” Jenn said. “So, it’s very scary.”

Despite all the challenges, she and her husband both said that adopting their son has brought them a lot of joy.

“It’s made me a better, stronger person, a better and stronger wife and teacher,” Jenn said.

But, she adds, she wishes there were more effective treatments that could help kids like her son live safely in the community and more places where traumatized parents could turn to find help.

“I feel like we’re doing everything that we can for him, but it just seems like it’s not enough,” Jenn said.

A Difficult Decision

Just before the beginning of the school year, Jenn and Jason made the difficult decision to send their son to a residential facility for children with severe behavioral health issues. He’s living there now.

The couple wrestled with that choice for some time. The boy had already spent almost three years in residential treatment all told, starting when he was 10. He’d moved back home last year because they thought he was ready.

But the family continued to deal with almost-daily standoffs involving verbal threats, angry outbursts and property destruction.

The boy’s 12-year-old sister said she has mixed feelings about her brother leaving home again to reenter residential treatment.

“It makes me feel happy and sad,” she said, “because, well, I love my brother. And I know he’ll be getting the help he needs.”

She’s comforted knowing her parents will be safe but said she’ll miss her brother a lot.

“I just love him,” she said. “And I don’t want to see him go through that.”

This story is part of a partnership that includes , , and Kaiser Health News.

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But now he worries about the future of his 21-year-old-son, who has lived in central Illinois since he was a toddler. José’s son has a criminal record, which could make him a . KHN is not using the son’s name because of those risks and is using the father’s middle name, José, because both men are in the U.S. without legal permission.

José’s son was diagnosed with schizophrenia and bipolar disorder last year and has faced barriers to getting affordable treatment, in part because he doesn’t have legal status. His untreated conditions have led to scrapes with the law.

Mental health advocates say many people with untreated mental illness run the risk of cycling in and out of the criminal justice system, and the situation is particularly fraught for those without legal status.

“If he gets deported, he’d practically be lost in Mexico, because he doesn’t know Mexico,” said José, speaking through an interpreter. “I brought him here very young and, with his illness, where is he going to go? He’s likely to end up on the street.”

Legal Troubles

José’s son has spent several weeks in jail and numerous days in court over the past year.

On the most recent occasion, the young man sat nervously in the front row of a courtroom in Illnois’ Champaign County Courthouse. Wearing a white button-down shirt and dress pants, his hair parted neatly, he stared at the floor while waiting for the judge to enter.

That day, he pleaded guilty to a criminal charge of property damage. The incident took place at his parents’ house earlier this year. He had gotten into a fight with his brother-in-law and broke a window. His father said it was yet another out-of-control moment from his son’s recent struggles with mental illness.

Before beginning proceedings, the judge read a warning aloud — a practice that is now standard to make sure noncitizens are aware they could face deportation (or be denied citizenship or reentry to the U.S.) if they plead guilty in court.

José’s son received 12 months of probation.

After the hearing, he said that his life was good just a couple of years ago: He was living on his own, working and taking classes at a community college. But all that changed when he started hearing voices and began struggling to keep a grip on reality. He withdrew from his friends and family, including his dad.

One time, he began driving erratically, thinking his car was telling him what to do. A month after that episode, he started having urges to kill himself and sometimes felt like hurting others.

In 2018, he was hospitalized twice and finally diagnosed with schizophrenia and bipolar disorder.

José said that during this time, his son — who had always been respectful and kind — grew increasingly argumentative and even threatened to hurt his parents. The psychiatric hospitalizations didn’t seem to make a difference.

“He asked us for help, but we didn’t know how to help him,” José said. “He’d say, ‘Dad, I feel like I’m going crazy.'”

José’s son said he met with a therapist a few times and took the medication he was prescribed in the hospital. He was also using marijuana to cope, he said.

The prescribed medication helped, he said, but without insurance he couldn’t afford to pay the $180 monthly cost. When he stopped the meds, he struggled and continued having run-ins with the police.

Undocumented And Uninsured

For people who are both undocumented and living with a mental illness, the situation is “particularly excruciating,” said , an attorney and advocate with the Legal Council for Health Justice in Chicago who represents many clients like José’s son.

“If you have a mental illness that makes it difficult for you to control behaviors, you can end up in the criminal justice system,” Chapman said.

People with mental illness make up only a of violent offenders — they are actually more likely, compared with the general population, to be  of violent crime.

Chapman said the stakes are extremely high when people without legal status enter the criminal justice system: They risk getting deported to a country where they may not speak the language, or where it’s even more difficult to obtain quality mental health care.

“It could be a death sentence for them there,” Chapman said. “It’s an incredible crisis, that such a vulnerable young person with serious mental illness falls through the cracks.”

An estimated people under age 65 who live in the U.S. are ineligible for Medicaid or marketplace coverage under the Affordable Care Act because of their immigration status, according to the Kaiser Family Foundation. (Kaiser Health News is an editorially independent program of the foundation.)

Among them are those who are undocumented and other immigrants who otherwise do not fall into one of the as a lawful U.S. resident. People protected from deportation through the federal government’s Deferred Action for Childhood Arrivals policy, or DACA, also are for coverage under those programs.

For many people in all those groups, affordable health care is out of reach.

Some states have opened up access to Medicaid to undocumented children, including Illinois, California, Massachusetts, New York, Oregon, Washington and the District of Columbia, the National State Conference of Legislatures. But residents lose that coverage at age 19, except in California, which recently expanded eligibility .

For those who can’t access affordable health insurance because of their undocumented status, medical care is largely limited to emergency services and treatments covered by charity care or provided by community health centers.

It’s unclear how many people have been deported because of issues linked to mental illness; good records are not available, said , an attorney for immigrants’ rights with the Los Angeles-based pro bono law firm Public Counsel. But from the American Civil Liberties Union suggest that tens of thousands of immigrants deported each year have a mental disability.

Inlender, who represents people with mental disabilities in deportation hearings, said that when the lack of access to community-based treatment eventually leads to a person being detained in an immigration facility, that person risks further deterioration because many facilities are not equipped to provide the needed care.

On top of that, she said, immigrants facing deportation in most states don’t generally have a right to public counsel during the removal proceedings and have to represent themselves. Inlender points out that an immigrant with a mental disability could be particularly vulnerable without the help of a lawyer.

(Following a , the states of Washington, California and Arizona did establish a right to counsel for immigrants with severe mental illness facing deportation. For those in other states, a is designed to provide the same , but it’s only for certain detained immigrants.)

Medicaid For More People?

Chapman and other advocates for immigrants’ rights say expanding Medicaid to cover everyone who otherwise qualifies — regardless of legal status — and creating a broader pathway to U.S. citizenship would be good first steps toward helping people like José’s son.

“Everything else is kind of a ‘spit and duct tape’ attempt by families and advocates to get somebody what they need,” Chapman said.

Critics of the push to expand Medicaid to cover more undocumented people object to the costs, and argue that the money should be spent, instead, on those living in the country legally. (California’s move to expand Medicaid through age 25 will cost the state around , according to some estimates.)

As for José’s son, he recently found a pharmacy that offers a cheaper version of the prescription drug he needs to treat his mental health condition — and he’s feeling better.

He now works as a landscaper and hopes to get back to college someday to study business. But he fears his criminal record could stand in the way of those goals, and he’s aware that his history makes him a target for immigration sweeps.

José said his greatest fear is that his son will end up back in Mexico — away from family and friends, in a country he knows little about.

“There are thousands of people going through these issues … and they’re in the same situation,” José said. “They’re in the dark, not knowing what to do, where to go or who to ask for help.”

Christine Herman is a recipient of a Rosalynn Carter fellowship for mental health journalism. Follow her on Twitter: .

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When Toni and Jim Hoy adopted their son Daniel through the foster care system, he was an affectionate toddler. They did not plan to give him back to the state of Illinois, ever.

“Danny was this cute, lovable little blond-haired, blue-eyed baby,” Jim said.

Toni recalled times Daniel would reach over, put his hands on her face and squish her cheeks. “And he would go, ‘You pretty, Mom,’ ” Toni said. “Oh, my gosh, he just melted my heart when he would say these very loving, endearing things to me.”

But as Daniel grew older, he changed. He began to show signs of serious mental illness that eventually manifested in violent outbursts and nearly a dozen psychiatric hospitalizations, starting at age 10. Doctors said he needed intensive, specialized care away from home — institutional services that cost at least $100,000 a year.

The family had private insurance through Jim’s job, and Daniel also had Medicaid coverage because he was adopted. But neither insurance would pay for that treatment. Exhausted and desperate, the Hoys decided to relinquish custody to the state. If they sent Daniel back into the foster care system, the child welfare agency would be obligated to pay for the services he needed.

“To this day, it’s the most gut-wrenching thing I’ve ever had to do in my life,” Jim said. He went to the hospital and told Daniel, then 12, that they were legally abandoning him so child welfare could take over. “I was crying terribly. But it was the only way we figured we could keep the family safe.”

Two-thirds of states don’t keep track of how many families give up custody to help a child get mental health services. But a  by the Government Accountability Office found that, back in 2001, families in 19 states relinquished nearly 13,000 children.

Today in Illinois, state records show that dozens of children enter state custody this way each year, despite a  aimed at preventing it. And  collected by the University of Maryland for the federal government finds that Illinois is not alone in failing to address this issue.

Mental health advocates say the problem is one of “too little, too late.” Even when states try to help children get access to treatment without a custody transfer, the efforts come too late in the progression of the children’s illnesses.

The advocates blame decades of inadequate funding for in-home and community-based services across the country — a lack of funding that has chipped away at the mental health system. Without that early intervention, children deteriorate to the point of being needlessly hospitalized and requiring costly residential care.

Until that underlying problem is addressed, child advocates say, the problem of families trading custody for treatment will never truly be solved.

Out Of Options

Daniel grew up as the youngest of four children in Ingleside, north of Chicago. As a baby, he had been severely neglected in his birth family — starved and left for dead. The early trauma Daniel experienced very likely affected his brain development, doctors said.

Toni home-schooled her children until she had to return to work full time in 2005. She said Daniel, who was 10, just fell apart.

“After six weeks of being in a public school classroom — something kids do every day — he couldn’t emotionally handle it and had his first hospitalization,” Toni said.

Daniel’s post-traumatic stress disorder and severe anxiety manifested in violent outbursts.

“He held knives to people’s throats,” Toni said. “He tried putting his fingers and his tongue in the light sockets. He broke almost every door in the house.”

In the car, there were times he’d reach over and grab the wheel while Toni was driving, to try to force the car into oncoming traffic. Other times, he would lash out at his siblings.

“At the same time, he’s a little boy,” she said. “He didn’t want to be that way. He didn’t like being that way.”

Despite Toni and Jim’s efforts to help their son with therapy and medication, the violence escalated, and Daniel was repeatedly hospitalized.

Although his doctors and therapists said he needed residential treatment, which would run at least $100,000 a year, both the family’s private health insurance, and Daniel’s secondary Medicaid coverage, denied coverage.

So the Hoys applied for a state grant meant for children with severe emotional disorders. They also asked for help from Daniel’s school district, which is supposed to cover a portion of the costs when students need long-term, off-site care. They were denied both.

“We were told we had to pay out-of-pocket for it,” Toni said.

Then one night, Daniel picked up his brother Chip, threw him down the stairs and punched him over and over before their dad pulled the boys apart.

Daniel went back to the hospital for the 11th time in two years. That’s when the Illinois Department of Children and Family Services gave the Hoys an ultimatum.

“[They] basically said, ‘If you bring him home, we’re going to charge you with child endangerment for failure to protect your other kids,'” Toni remembered. “‘And if you leave him at the hospital, we’ll charge you with neglect.'”

“If any of our other kids got hurt once we brought him home, they would take the other kids,” Jim said. “They put our backs against the wall, and they didn’t give us any options.” So the couple left Daniel at the hospital.

Once the state’s child welfare agency steps in to take custody, the agency will place the child in residential treatment and pay for it, said Robert Farley Jr., a lawyer in Naperville, Ill., another Chicago suburb.

“So you get residential services, but then you’ve given up custody of your child,” Farley said. “Which is, you know, barbaric. You have to give up your child to get something necessary.”

Taking It To The Courts

The Hoys were investigated by DCFS and charged with neglect. They appealed in court and the charge was later amended to a “no-fault dependency,” meaning the child entered state custody at no fault of the parents.

They didn’t know where Daniel was for several weeks, until he phoned from the group home where he had been placed to tell them he was OK.

Losing custody meant Toni and Jim could visit Daniel and maintain contact with him, but they could not make decisions regarding his care.

Over the next three years, Daniel lived at three residential treatment centers. One was five hours away by car. His parents visited as often as they could.

Toni spent months reading up on federal Medicaid law, and she learned the state-federal health insurance program is  all medically necessary treatments for eligible children.

The Hoys hired a lawyer and, two years after giving Daniel up, they sued the state in 2010.

Six months later, they settled out of court and regained custody of Daniel, who was 15 by then. They also got the money to pay for Daniel’s care on their own.

Around the same time, Farley, the attorney, decided to take on the issue on behalf of all Medicaid-eligible children in the state. He filed a , claiming Illinois illegally withheld services from children with severe mental health disorders.

“There [are] great federal laws,” he said. “But someone’s not out there enforcing them.”

In his lawsuit, Farley cited the state’s own data, showing that 18,000 children in Illinois have a severe emotional or behavioral disorder, yet only about 200 receive intensive mental health treatment.

As part of a settlement, a federal judge ordered Illinois Medicaid officials to completely overhaul the state system so that kids get home- and community-based treatment in the early stages of their illness.

The deadline for the state to roll out those changes is this month.

A Law That Didn’t Fix The Problem

While these legal battles were taking place, Illinois lawmakers began their own work to ensure that parents no longer have to relinquish custody to get their kids the help they need.

The Custody Relinquishment Prevention Act, which  in 2015, ordered six state agencies that interact with children and families to intervene when a family is considering giving up custody to get access to services.

“I think the question is: Shouldn’t government be stepping in and doing their job? And they’re not,” said Democratic state Rep. Sara Feigenholtz. “We just want them to do their job.”

B.J. Walker, head of Illinois’ child welfare agency, said the reasons for custody relinquishments are complex.

“If law could fix problems, we’d have a different world,” she said.

In some places, waitlists for residential treatment beds for kids in crisis can be months long.

But even when beds are available, Walker said, some facilities are simply unwilling or unable to take a child who has a severe mental health condition or a co-occurring medical condition.

Out of desperation, some parents will give up custody in the hope of getting their child to the top of the waiting list. But that doesn’t necessarily solve the problem.

´¡²õÌý reports, many foster children languish for months in psychiatric wards that are ill-equipped to provide long-term care because the state is unable to place them in an appropriate therapeutic setting. Walker’s agency is  for allegedly forcing children to “remain in locked psychiatric wards, causing immense harm,” for weeks or months after they’ve been cleared for discharge.

The Underlying Issue

Neil Skene, spokesman for Illinois’ child welfare agency, said there are more options for families like the Hoys today than there were a decade ago. That includes a  launched in 2017 that helps families get access to services.

When the child welfare agency is blamed for this problem, Skene said, it’s like when a pitcher comes in at the end of a losing game to save the day and gets tagged with the loss.

Some mental health advocates agree it’s not fair to fault the state’s child welfare agency for a problem that stems from a chronically underfunded mental health system.

Heather O’Donnell, a mental health advocate who works for Thresholds, a behavioral health treatment provider in Chicago, blames years of inadequate funding in Illinois and across the U.S.

Early-intervention services are either not available or not accessible because insurance companies deny coverage.

“If these kids had leukemia or diabetes, they would’ve gotten help long, long before,” O’Donnell said. “It’s because they have a mental health condition that causes their behavior to be challenging and erratic. And as a society, we sweep these conditions under the rug until there’s a crisis. We just wait for tragedy.”

“What Illinois needs to put into place is a system that helps these families early on, so that these kids never get hospitalized,” O’Donnell said.

, who has been studying the problem of custody relinquishment for decades, agrees. She is the lead researcher on a  — commissioned by the federal government and carried out by the University of Maryland — that explores why the problem persists.

Stroul said other states, including Georgia and New Jersey, have passed laws and stepped up efforts to help children get treatment while in parental custody.

“But those strategies, in and of themselves, are not sufficient unless there are home- and community-based services available that provide the supports and treatment needed to keep children and families safe in the community,” Stroul said.

The Difference Treatment And Family Can Make

Daniel Hoy is now 24 and has been out of residential treatment — and stable — for six years.

He said treatment was tough, and he would not have gotten better without his parents’ love and support. “It was never a question in my mind that my parents would always be there for me,” he said. “Sometimes it’s so hard to do it for yourself. It almost helps to know that I’m doing it for myself, but I’m also doing it for my family and for our relationship.”

Daniel now works nights for a shipping company and lives with his girlfriend and their toddler daughter in central Illinois, not far from his parents.

“I just love having a relationship with him,” Jim said. “I feel so privileged that [when] he’s having a bad day, he comes over and talks to us about it.”

Toni said, looking back, it’s shameful that families get torn apart by a system that’s supposed to be supportive.

She is grateful they made it through intact. Other families that have gone through this same thing, she said, have lost touch with their child forever. “Kids do need services,” Toni said. “But they also need the support of their families.”

This story is part of NPR’s reporting partnership with  and Kaiser Health News. A longer version of this story appears in  podcast. Christine Herman is a recipient of a Rosalynn Carter fellowship for mental health journalism. 

This <a target="_blank" href="/mental-health/to-get-mental-health-help-for-a-child-desperate-parents-relinquish-custody/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

Her mom calls her Princess, but her real name is Lindsey. She’s 17 and lives with her mom, Sandra, a nurse, outside Atlanta. On May 17, 2020, a Sunday, Lindsey decided she didn’t want breakfast; she wanted Doritos. So she left home and walked to Family Dollar, taking her pants off on the way, while her mom followed on foot, talking to the police on her phone as they went.

Lindsey has autism. It can be hard for her to communicate and navigate social situations. She thrives on routine and gets special help at school. Or got help, before the coronavirus pandemic closed schools and forced tens of millions of children to stay home. Sandra said that’s when their living hell started.

“It’s like her brain was wired,” she said. “She’d just put on her jacket, and she’s out the door. And I’m chasing her.”

On May 17, Sandra chased her all the way to Family Dollar. Hours later, Lindsey was in jail, charged with assaulting her mom. (KHN and NPR are not using the family’s last name.)

Lindsey is one of almost  in the U.S. who have a serious emotional or behavioral health condition. When the pandemic forced schools and doctors’ offices to close last spring, it also cut children off from the trained teachers and therapists who understand their needs.

As a result, many, like Lindsey, spiraled into emergency rooms and even police custody. Federal data shows  of kids in mental health crisis during the pandemic — a surge that’s further taxing an already overstretched safety net.

‘Take Her’

Even after schools closed, Lindsey continued to wake up early, get dressed and wait for the bus. When she realized it had stopped coming, Sandra said, her daughter just started walking out of the house, wandering, a few times a week.

In those situations, Sandra did what many families in crisis report they’ve had to do since the pandemic began: race through the short list of places she could call for help.

First, her state’s mental health crisis hotline. But they often put Sandra on hold.

“This is ridiculous,” she said of the wait. “It’s supposed to be a crisis team. But I’m on hold for 40, 50 minutes. And by the time you get on the phone, [the crisis] is done!”

Then there’s the local hospital’s emergency room, but Sandra said she had taken Lindsey there for previous crises and been told there isn’t much they can do.

That’s why, on May 17, when Lindsey walked to Family Dollar in just a red T-shirt and underwear to get that bag of Doritos, Sandra called the last option on her list: the police.

Sandra arrived at the store before the police and paid for the chips. According to Sandra and police records, when an officer approached, Lindsey grew agitated and hit her mom on the back, hard.

Sandra said she explained to the officer: “‘She’s autistic. You know, I’m OK. I’m a nurse. I just need to take her home and give her her medication.'”

Lindsey takes a mood stabilizer, but because she left home before breakfast, she hadn’t taken it that morning. The officer asked if Sandra wanted to take her to the nearest hospital.

The hospital wouldn’t be able to help Lindsey, Sandra said. It hadn’t before. “They already told me, ‘Ma’am, there’s nothing we can do.’ They just check her labs, it’s fine, and they ship her back home. There’s nothing [the hospital] can do,” she recalled telling the officer.

Sandra asked if the police could drive her daughter home so the teen could take her medication, but the officer said no, they couldn’t. The only other thing they could do, the officer said, was take Lindsey to jail for hitting her mom.

“I’ve tried everything,” Sandra said, exasperated. She paced the parking lot, feeling hopeless, sad and out of options. Finally, in tears, she told the officers, “Take her.”

Lindsey does not like to be touched and fought back when authorities tried to handcuff her. Several officers wrestled her to the ground. At that point, Sandra protested and said an officer threatened to arrest her, too, if she didn’t back away. Lindsey was taken to jail, where she spent much of the night until Sandra was able to post bail.

Clayton County Solicitor-General Charles Brooks denied that Sandra was threatened with arrest and said that while Lindsey’s case is still pending, his office “is working to ensure that the resolution in this matter involves a plan for medication compliance and not punitive action.”

Sandra isn’t alone in her experience. Multiple families interviewed for this story reported similar experiences of calling in the police when a child was in crisis because caretakers didn’t feel they had any other option.

‘The Whole System Is Really Grinding to a Halt’

Roughly  ages 6 through 17 are living with serious emotional or behavioral difficulties, including children with autism, severe anxiety, depression and trauma-related mental health conditions.

Many of these children depend on schools for access to vital therapies. When schools and doctors’ offices stopped providing in-person services last spring, kids were untethered from the people and supports they rely on.

“The lack of in-person services is really detrimental,” said , a pediatrician and professor of emergency medicine at Brown University.

Marjorie, a mother in Florida, said her 15-year-old son has suffered during these disruptions. He has attention deficit hyperactivity disorder and oppositional defiant disorder, a condition marked by frequent and persistent hostility. Little things — like being asked to do schoolwork — can send him into a rage, leading to holes punched in walls, broken doors and violent threats. (Marjorie asked that we not use the family’s last name or her son’s first name to protect her son’s privacy and future prospects.)

The pandemic has shifted both school and her son’s therapy sessions online. But Marjorie said virtual therapy isn’t working because her son doesn’t focus well during sessions and tries to watch TV instead. Lately, she has simply been canceling them.

“I was paying for appointments and there was no therapeutic value,” Marjorie said.

The issues cut across socioeconomic lines — affecting families with private insurance, like Marjorie, as well as those who receive coverage through Medicaid, a federal-state program that provides health insurance to low-income people and those with disabilities.

In the first few months of the pandemic, between March and May, children on Medicaid received  fewer outpatient mental health services — including therapy and in-home support — compared to the same time period in 2019, according to the Centers for Medicare & Medicaid Services. That’s even after accounting for increased telehealth appointments.

And while the nation’s ERs have seen a decline in overall visits, there was a relative increase in mental health visits for kids in 2020 compared with 2019.

The Centers for Disease Control and Prevention found that, from April to October last year, hospitals across the U.S. saw a  in the proportion of mental health emergency visits for children ages 5 to 11, and a 31% increase for children ages 12 to 17.

“Proportionally, the number of mental health visits is far more significant than it has been in the past,” said Duffy. “Not only are we seeing more children, more children are being admitted” to inpatient care.

That’s because there are fewer outpatient services now available to children, she said, and because the conditions of the children showing up at ERs “are more serious.”

This crisis is not only making life harder for these kids and their families, but it’s also stressing the entire health care system.

Child and adolescent psychiatrists working in hospitals around the country said children are increasingly “boarding” in emergency departments for days, waiting for inpatient admission to a regular hospital or psychiatric hospital.

Before the pandemic, there was already a  for children, said , a child psychiatrist at Judge Baker Children’s Center in Boston. That shortage has only gotten worse as hospitals cut capacity to allow for more physical distancing within psychiatric units.

“The whole system is really grinding to a halt at a time when we have unprecedented need,” Bellonci said.

‘A Signal That the Rest of Your System Doesn’t Work’

Psychiatrists on the front lines share the frustrations of parents struggling to find help for their children.

Part of the problem is there have never been enough psychiatrists and therapists trained to work with children, intervening in the early stages of their illness, said , a child psychiatrist at New York University.

“Tons of people showing up in emergency rooms in bad shape is a signal that the rest of your system doesn’t work,” she said.

Too often, Havens said, services aren’t available until children are older — and in crisis. “Often for people who don’t have access to services, we wait until they’re too big to be managed.”

While the pandemic has made life harder for Marjorie and her son in Florida, she said it has always been difficult to find the support and care he needs. Last fall, he needed a psychiatric evaluation, but the nearest specialist who would accept her commercial insurance was 100 miles away, in Alabama.

“Even when you have the money or you have the insurance, it is still a travesty,” Marjorie said. “You cannot get help for these kids.”

Parents are frustrated, and so are psychiatrists on the front lines. , who leads the psychiatric crisis department at Nationwide Children’s Hospital in Columbus, Ohio, said that once a child is stabilized after a crisis it can be hard to explain to parents that they may not be able to find follow-up care anywhere near their home.

“Especially when I can clearly tell you I know exactly what you need, I just can’t give it to you,” Glawe said. “It’s demoralizing.”

When states and communities fail to provide children the services they need to live at home, kids can deteriorate and even wind up in jail, like Lindsey. At that point, Glawe said, the cost and level of care required will be even higher, whether that’s hospitalization or long stays in residential treatment facilities.

That’s exactly the scenario Sandra, Lindsey’s mom, is hoping to avoid for her Princess.

“For me, as a nurse and as a provider, that will be the last thing for my daughter,” she said. “It’s like [state and local leaders] leave it to the school and the parent to deal with, and they don’t care. And that’s the problem. It’s sad because, if I’m not here …”

Her voice trailed off as tears welled.

“She didn’t ask to have autism.”

To help families like Sandra’s and Marjorie’s, advocates said, all levels of government need to invest in creating a mental health system that’s accessible to anyone who needs it.

But given that many states have seen their  due to the pandemic, there’s a concern services will instead be cut — at a time when the need has never been greater.

This story is part of a reporting partnership that includes , and .

This <a target="_blank" href="/mental-health/kids-already-coping-with-mental-disorders-spiral-as-pandemic-topples-vital-support-systems/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

He did not.

What he got instead from those town halls last month was encouragement to return to class at the institution affectionately known as Mizzou. The university, in Columbia, would be testing only people with symptoms, and at that point, the university said people who test positive off campus to inform the school.

“It feels like the university doesn’t really care whether we get sick or not,” said El-Jayyousi, who is scheduled for two in-person classes, and lives at home with his parents and 90-year-old grandmother.

He’s seen the studies from researchers at Yale and Harvard that suggest testing needs to be much more widespread. He asked his instructors if he could join lectures remotely once classes begin Monday. One was considering it; the other rejected it.

“It was kind of very dismissive, like ‘so what?’” El-Jayyousi said.

But it’s an enormous “so what?” packed with fear and unknowns for Jayyousi and some 20 million other students enrolled in some level of postsecondary education in America, if they are not already online only.

As with the uncoordinated and chaotic national response to the COVID-19 pandemic, higher education has no clear guidance or set of standards to adhere to from the federal government or anywhere else. Policies for reentry onto campuses that were abruptly shut in March are all over the map.

Hundreds Undecided

According to the , or C2i, a project of Davidson College that monitors how higher ed is responding to the pandemic, there is nothing resembling a common approach. Of 2,958 institutions it follows, 151 were planning to open fully online, 729 were mostly online and 433 were taking a hybrid approach. Just 75 schools were insisting on students attending fully in person, and 614 were aiming to be primarily in-person. Some 800 others were still deciding, just weeks before instruction was to start.

The decisions often have little correlation with the public health advisories in the region. Mizzou, which is in an area with recent COVID spikes, is holding some in-person instruction and has nearly 7,000 students signed up to live in dorms and other university-owned housing. Harvard, in a region with extremely low rates of viral spread, has opted to go all online and allowed students to defer a year.

The specific circumstances colleges and universities face are as much determined by local fiscal and political dictates as by medicine and epidemiology. It is often unclear who is making the call. So it’s every-student-for-herself to chart these unknown waters, even as students (or their families) have written tuition checks for tens of thousands of dollars and signed leases for campus and off-campus housing.

And the risks — health, educational and financial — boomerang back on individual students: Two weeks after University of North Carolina students, as instructed, returned to the flagship campus in Chapel Hill with the promise of at least some in-person learning, all classes went online. Early outbreaks surged from a few students to more than 130 in a matter of days. Most undergrads have about a week to clear out of their dorms.

“It’s really tough,” said neuroscience major Luke Lawless, 20. “Chapel Hill is an amazing place, and as a senior it’s tough to know that my time’s running out — and the virus only adds to that.”

Location, Location, Location

C2i’s creator, Davidson education Assistant Professor , said the extreme diversity of approaches comes from the sheer diversity of schools, the penchant of many to follow the leads of more prestigious peers, and local politics.

“Some states have very strong and stringent mask requirements. Some have stronger stay-at-home orders. Others are sort of leaving it up to localities. So the confluence of politics, institutional isomorphism — that imitation — and different needs that the institutions have are driving the differences,” Marsicano said.

Location matters a lot, too, Marsicano said, pointing to schools like George Washington University and Boston University in urban settings where the environment is beyond the control of the school, versus a place like the University of the South in remote, rural Sewanee, Tennessee, where 90% of students will return to campus.

“It’s a lot easier to control an outbreak if you are a fairly isolated college campus than if you are in the middle of a city,” Marsicano said.

Student behavior is another wild card, Marsicano said, since even the best plans will fail if college kids “do something stupid, like have a massive frat party without masks.”

“You’ve got student affairs professionals across the country who are screaming at the top of their lungs, ‘We can’t control student behavior when they go off campus’” Marsicano said.

Another factor is a vacuum at the federal level. Although the Department of Education says Secretary Betsy DeVos has held dozens of calls with governors and state education superintendents, there’s no sign of an attempt to offer unified guidance to colleges beyond that links to relaxed regulatory requirements and anodyne fact sheets from the Centers for Disease Control and Prevention on preventing viral spread.

Even the money that the department notes it has dispensed — $30 billion from Congress’ CARES Act — is weighted toward K-12 schools, with about $13 billion for higher education, including student aid.

The U.S. Senate adjourned last week until Sept. 8, having never taken up a House-passed relief package that included some $30 billion for higher education. A trio of Democratic senators, including Sen. Elizabeth Warren, standards on college campuses.

No Benchmarks

Campus communities with very different levels of contagion are making opposite calls about in-person learning. Mizzou’s Boone County has seen more than 1,400 confirmed COVID cases after a spike in mid-July. According to the Harvard Global Health Institute’s COVID risk map, Boone has accelerated spread, with 14 infections per day per 100,000 people. The institute advises stay-at-home orders or rigorous testing and tracing at such rates of infection. Two neighboring counties were in the red zone recently, with more than 25 cases per day per 100,000 people. Mizzou has left it up to deans whether classes will meet in person, making a strong argument for face-to-face instruction.

Meanwhile, Columbia University in New York City opted for all online instruction, even though the rate of infection there is a comparatively low 3.8 cases per day per 100,000 people.

Administrators at Mizzou considered and rejected mandatory testing. “All that does is provide one a snapshot of the situation,” University of Missouri system President Mun Choi said in one of the town halls.

Mizzou has an in-house team that will carry out case investigation and contact tracing with the local health department. This week, following questions from the press and pressure from the public, the university announced any positive COVID test to the school.

Who Do You Test? When?

CDC guidance for higher education suggests there’s not enough data to know whether testing everyone is effective, but some influential researchers, such as those at Harvard and Yale, disagree.

“This virus is subject to silent spreading and asymptomatic spreading, and it’s very hard to play catch-up,” said Yale professor , who studies public health policy. “And so thinking that you can keep your campus safe by simply waiting until students develop symptoms before acting, I think, is a very dangerous game.”

conducted by Paltiel and his colleagues show that, of all the factors university administrators can control — including the sensitivity and specificity of COVID-19 tests — the frequency of testing is most important.

He’s “painfully aware” that testing everyone on campus every few days sets a very high bar — logistically, financially, behaviorally — that may be beyond what most schools can reach. But he says the consequences of reopening campuses without those measures are severe, not just for students, but for vulnerable populations among school workers and in the surrounding community.

“You really have to ask yourself whether you have any business reopening if you’re not going to commit to an aggressive program of high-frequency testing,” he said.

The Fighting — And Testing — Illini

Some institutions that desperately want students to return to campus are backing the goal with a maximal approach to safety and testing.

About a four-hour drive east along the interstates from Mizzou is the University of Illinois at Urbana-Champaign, whose sports teams are known as the Fighting Illini.

Weeks ago, large white tents with signs reading “Walk-Up COVID-19 Testing” have popped up across campus; there students take a simple saliva test.

“This seems to be a lot easier than sticking a cotton swab up your nose,” graduate student Kristen Muñoz said after collecting a bit of her saliva in a plastic tube and sealing it in a bag labeled “Biohazard.”

In just a few hours, she got back her result: negative.

The school plans to offer free tests to the 50,000 students expected to return this month, as well as some 11,000 faculty and staff members.

“The exciting thing is, because we can test up to 10,000 per day, it allows the scientist to do what’s really the best for trying to protect the community as opposed to having to cut corners, because of the limitations of the testing,” said University of Illinois chemist , who helped develop the , which received emergency use authorization from the federal Food and Drug Administration this week.

The test is similar to one designed by Yale and funded by the NBA that cleared the FDA hurdle just before the Illinois test. Both Yale and Illinois hope aggressive testing will allow most undergraduate students to live on campus, even though most classes will be online.

University of Illinois epidemiologist said they are following data that suggest campuses need to test everyone every few days because the virus is not detectable in infected people for three or four days.

“But about two days after that, your infectiousness peaks,” she said. “So, we have a very small window of time in which to catch people before they have done most of the infection that they’re going to be doing.”

Campus officials accepted Smith’s recommendation that all faculty, staffers and students participating in any on-campus activities be required to get tested twice a week.

Illinois can do that because its test is convenient and not invasive, which spares the campus from using as much personal protective equipment as the more invasive tests require, Burke said. And on-site analysis avoids backlogs at public health and commercial labs.

Muddled in the Middle

Most other colleges fall somewhere between the approaches of Mizzou and the University of Illinois, and many of their students still are uncertain how their fall semester will go.

At the University of Southern California, a private campus of about 48,500 students in Los Angeles, officials had hoped to have about 20% of classes in person — but the county government , insisting on for reopening than the statewide standards.

If students eventually are allowed back, they will have to show a recent coronavirus test result that they obtained on their own, said Dr. Sarah Van Orman, chief health officer of USC Student Health.

They will be asked to do daily health assessments, such as fever checks, and those who have been exposed to the virus or show symptoms will receive a rapid test, with about a 24-hour turnaround through the university medical center’s lab. “We believe it is really important to have very rapid access to those results,” Van Orman said.

At California State University — the nation’s largest four-year system, with 23 campuses and nearly a half-million students — officials decided to move nearly all its fall courses online.

“The first priority was really the health and safety of all of the campus community,” said Mike Uhlenkamp, spokesperson for the CSU Chancellor’s Office. About 10% of CSU students are expected to attend some in-person classes, such as nursing lab courses, fine art and dance classes, and some graduate classes.

Uhlenkamp said testing protocols are being left up to each campus, though all are required to follow local safety guidelines. And without a medical campus in the system, CSU campuses do not have the same capacity to take charge of their own testing, as the University of Illinois is doing.

For students who know they won’t be on campus this fall, there is regret at lost social experiences, networking and hands-on learning so important to college.

But the certainty also brings relief.

“I don’t think I would want to be indoors with a group of, you know, even just a handful of people, even if we have masks on,” said Haley Gray, a 28-year-old graduate student at the University of California-Berkeley starting the second year of her journalism program.

She knows she won’t have access to Berkeley’s advanced media labs or the collaborative sessions students experience there. And she said she realized the other day she probably won’t just sit around the student lounge and strike up unexpected friendships.

“That’s a pretty big bummer but, you know, I think overall we’re all just doing our best, and given the circumstances, I feel pretty OK about it,” she said.

This story is part of a partnership that includes , , , and Kaiser Health News.

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During six weeks on life support at Northwestern Memorial Hospital in Chicago, Ramirez said, she had terrifying nightmares that she couldn’t distinguish from reality.

“Most of them involve me drowning,” she said. “I attribute that to me not being able to breathe, and struggling to breathe.”

On June 5, Ramirez, 28, became the to undergo a double lung transplant. She is strong enough now to begin sharing the story of her ordeal.

Mysterious Exposure

Before the pandemic, Ramirez worked as a paralegal for an immigration law firm in Chicago. She enjoyed walking her dogs and running 5K races.

Ramirez had been working from home since mid-March, hardly leaving the house, so she has no idea how she contracted the coronavirus. In late April, she started experiencing chronic spasms, diarrhea, loss of taste and smell, and a slight fever.

“I felt very fatigued,” Ramirez said. “I wasn’t able to walk long distances without falling over. And that’s when I decided to go into the emergency room.”

From the ER to a Ventilator

The staff at Northwestern checked her vitals and found her oxygen levels were extremely low. She was given 10 minutes to explain her situation over the phone to her mother in North Carolina and appoint her to make medical decisions on her behalf.

Ramirez knew she was about to be placed on a ventilator, but she didn’t understand exactly what that meant.

“In Spanish, the word ‘ventilator’ — ventilador — is ‘fan,’ so I thought, ‘Oh, they’re just gonna blow some air into me and I’ll be OK. Maybe have a three-day stay, and then I’ll be right out.’ So I wasn’t very worried,” Ramirez said.

In fact, she would spend the next six weeks heavily sedated on that ventilator and another machine — known as ECMO, or extracorporeal membrane oxygenation — pumping and oxygenating her blood outside of her body.

One theory about why Ramirez became so sick is that she has a that is treated with steroids, drugs that can suppress the immune system.

By early June, Ramirez was at risk of further decline. She began showing signs that her kidneys and liver were starting to fail, with no improvement in her lung function. Her family was told she might not make it through the night, so her mother and sisters caught the first flight from North Carolina to Chicago to say goodbye.

When they arrived, the doctors told Ramirez’s mother, Nohemi Romero, that there was one last thing they could try.

Ramirez was a candidate for a double lung transplant, they said, although the procedure had never been done on a COVID patient in the U.S. Her mother agreed, and within 48 hours of being listed for transplant, a donor was found and the successful procedure was performed on June 5.

At a recent news conference held by Northwestern Memorial, Romero shared in Spanish that there were no words to describe the pain of not being by her daughter’s side as she struggled for her life.

She thanked God all went well, and for giving her the strength to make it through.

‘I Just Felt Like a Vegetable’

, Northwestern Medicine’s chief of thoracic surgery, performed the 10-hour procedure.

“Most patients are quite sick going into [a] lung transplant,” Bharat in June. “But she was so sick. In fact, I can say without hesitation, the sickest patient I ever transplanted.”

Bharat said most COVID-19 patients will not be candidates for transplants because of their age and other health conditions that decrease the likelihood of success. And that up to half of COVID patients on ventilators survive the illness and are likely to recover on their own.

But for some, like Ramirez, Bharat said, a transplant can be a lifesaving option of last resort.

When Ramirez woke up after the operation, she was disoriented, could barely move her body and couldn’t speak.

“I just felt like a vegetable. It was frustrating, but at the time I didn’t have the cognitive ability to process what was going on,” Ramirez said.

She recalled being sad that her mother wasn’t with her in the hospital, not understanding that visitors weren’t allowed because of the pandemic.

Her family had sent photos to post by her hospital bed, and Ramirez said she couldn’t recognize anyone in the pictures.

“I was actually sort of upset about it, [thinking,] ‘Who are these strangers and why are their pictures in my room?’” Ramirez said. “It was weeks later, actually, that I took a second look and realized, ‘Hey, that’s my grandmother. That’s my mom and my siblings. And that’s me.”

After a few weeks, Ramirez said, she finally understood what happened to her. When COVID-19 restrictions loosened at the hospital in mid-June, her mother was finally able to visit.

“The first thing I did was just tear up,” Ramirez said. “I was overjoyed to see her.”

The Long Road to Recovery

After weeks of inpatient rehabilitation, Ramirez was discharged home. She’s now receiving in-home nursing assistance as well as physical and occupational therapy, and she’s working on finding a psychologist.

Ramirez eagerly looks forward to being able to spend more time with her family, her boyfriend and her dogs and serving the immigrant community through her legal work.

But for now, her days are consumed by rehab. Her doctors say it will be at least a year before she can function independently and be as active as before.

Ramirez is slowly regaining strength and learning how to breathe with her new lungs.

She takes 17 prescription medicines, some of them several times a day, including medicines to prevent her body from rejecting the new lungs. She also takes anxiety meds and antidepressants to help her cope with daily nightmares and panic attacks.

The long-term physical and mental health tolls on Ramirez and other COVID-19 survivors remain largely unknown, since the virus is so new.

While most people who contract the virus are left seemingly unscathed, for some patients, like Ramirez, the road to recovery is full of uncertainty, said , a physician-scientist at the Columbia University Mailman School of Public Health.

Some patients can experience post-intensive care syndrome, or PICS, which can consist of depression, memory issues and other cognitive and mental health problems, Hornig said. Under normal circumstances, ICU visits from loved ones are encouraged, she said, because the human interaction can be protective.

“That type of contact would normally keep people oriented … so that it doesn’t become as traumatic,” Hornig said.

Hopes for the Future

COVID-19 has , as Latinos are overrepresented in jobs that expose them to the virus and have lower rates of health insurance and other social protections.

Ramirez has health insurance, although that hasn’t spared her from tens and thousands of dollars’ worth of medical bills.

And even though she still ended up getting COVID-19, she counts herself lucky for having a job that allowed her to work from home when the pandemic struck. Many Latino workers don’t have that luxury, she said, so they’re forced to risk their lives doing low-wage jobs deemed essential at this time.

Ramirez’s mother is a breast cancer survivor, making her particularly vulnerable to COVID-19. She had been working at a meatpacking plant in North Carolina, for a company that Ramirez said has had hundreds of COVID-19 cases among employees.

So Ramirez is relieved to have her mom in Chicago, helping take care of her.

“I’m glad this is taking her away from her position,” Ramirez said.

Friends and family in North Carolina have been fundraising to help pay her medical bills, selling raffle tickets and setting up a on her behalf. Ramirez is also applying for financial assistance from the hospital.

Her experience with COVID-19 has not changed who she is as a person, she said, and she looks forward to living her life to the fullest.

If she ever gets the chance to speak with the family of the person whose lungs she now has, she said, she will thank them “for raising such a healthy child and a caring person [who] was kind enough to become an organ donor.”

Her life may never be the same, but that doesn’t mean she won’t try. She laughs as she explains how she asked her surgeon to take her skydiving someday.

“Dr. Bharat actually used to work at a skydiving company when he was younger,” Ramirez said. “And so he promised me that, hopefully within a year, he could get me there.”

And she has every intention of holding him to that promise.

This story is part of a reporting partnership that includes Illinois Public Media, Side Effects Public Media, NPR and KHN.

This <a target="_blank" href="/news/covid-double-lung-transplant-survivor-tells-her-story/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

Five kids still live at home, and all of them came to the Austins through the foster care system. All told, they see 14 doctors.

Many states promise to provide health care to help foster and adoptive families keep kids healthy, but recently in Illinois, thousands of children temporarily lost coverage when the state switched their health plans. Some of Rebecca and Bruce’s children got caught in the coverage gap, which has the Austins wondering whether the state will fulfill its end of the bargain.

Three of the Austins’ children see psychiatrists. One has regular visits with specialists for epilepsy and other health conditions. Another has therapy four times a week for movement and speech delays.

“A typical day is pretty crazy,” Rebecca Austin said in an interview before the coronavirus shelter-in-place orders were issued. “I say I’m a stay-at-home mom, but with all the doctors’ appointments and therapies and appointments and stuff, I’m on the go all the time.”

Their lives are full and busy already, and Austin is concerned Illinois’ health plan change will make juggling health care even more of a challenge.

The Austins live in Windsor, a rural town about 25 miles from the nearest hospital in Charleston, Illinois.

Since February, the state has been moving all current and former foster children covered by Medicaid into health plans provided by private insurers that contract with the state.

It’s a change to what’s known as . The shift has many families like the Austins concerned, because the initial phase of the rollout was rocky and because it’s not clear whether familiar, nearby health care providers will be designated as in-network.

More States Move To Managed Care 

already use managed-care companies to run their Medicaid health plans, which means state agencies pay insurance companies to provide health care to people in the Medicaid program.

Proponents of the managed-care model say it can lower costs while increasing access to care.

States that switch to managed care often find their budgets become more predictable, because they no longer pay providers for each service. Instead, they pay insurers a set amount per enrollee for all health care needs.

But Michael Sparer, a health policy professor at Columbia University in New York City, said as to whether managed care lowers costs and increases access to care. Success depends on whether states hold insurers to their promises to maintain an adequate provider network, he said.

“ refers to a health plan’s ability to deliver the benefits promised by providing reasonable access to enough in-network primary care and specialty physicians, and all health care services included under the terms of the contract,” according to the National Association of Insurance Commissioners.

Sparer said success with Medicaid managed care also hinges on whether states “have the ability and have the oversight that’s required to make sure that the program works effectively.”

In recent years, Illinois switched most of the state’s Medicaid enrollees into . Former foster children moved onto those plans on Feb. 1, and current foster children are set to eventually join them. The switch was initially planned for April 1, but the state has postponed the move for at least 30 days, citing the COVID-19 pandemic.

whether the move is in the children’s best interests.

Many foster children have serious physical and mental health needs, and the switch could disrupt long-standing relationships with therapists and other providers, critics of managed care argue.

For thousands of families like the Austins, this means figuring out whether their children’s providers will still be in-network or whether they’ll have to use new doctors, who might be farther from home.

Austin said her family found a managed-care plan that allowed them to keep most of their children’s providers. But when the February switch was finalized, the Austin children were among the 2,500 former foster kids whose health coverage was interrupted.

The “end date” for her kids’ coverage had been incorrectly listed in the computer system as Jan. 31 — one day prior to the coverage start date, Feb. 1, Rebecca said. This effectively left them without insurance. State officials blamed a glitch in the system for the error.

John Hoffman, a spokesman for the Illinois Department of Healthcare and Family Services, said in a statement that the agency worked with managed-care organizations “immediately to correct the error, resolving it within days.”

For the Austins, the error meant they had to cancel appointments and had problems getting prescriptions filled.

“My daughter who has epilepsy, her medicine was … a little over $1,000,” Austin said. “I didn’t have $1,045 to pay her for the medicine and, so, we were in a panic as to what to do because she had to have the medicine.”

Phone calls to pharmacies and insurers were onerous, she said, but she ultimately resolved the issue. Still, the Austins’ youngest, 4-year-old Camdyn, missed two weeks of therapy sessions, while they waited for the new insurer to approve them. Austin worries these delays will slow his progress.

Making Medicaid Managed Care Work

Heidi Dalenberg is an attorney with the , which serves as a watchdog for the state’s child welfare agency. She said managed care can be beneficial, helping ensure all kids get regular well-checks and prevent doctors from overtreating or overmedicating children.

But those benefits will be realized only if the state has prepared for the transition and holds insurance companies to their contract requirements, she said. That includes ensuring managed-care organizations, or MCOs, have appropriate provider networks so children have access to doctors close to home.

“When it doesn’t work is when you have an MCO that is more worried about cutting costs and denying approvals for care than they are in making sure that kids get what they need,” Dalenberg said.

A retired federal judge is monitoring Illinois’ efforts to ensure foster children don’t lose access to care in the switch to Medicaid managed care, Dalenberg said.

Hoffman, the state DHS spokesman, said the switch to managed care, provided by the insurer YouthCare Illinois, will help improve health care for current and former foster children by coordinating and providing services.

“Right now, when a family needs a provider for their child, they’re left to navigate a complex system alone,” Hoffman said in a statement. “With YouthCare, families have a personal care coordinator who helps manage their overall care, researches providers and schedules appointments.”

He said the problems caused by February’s glitch have been resolved and will not resurface when 17,000 current foster children eventually get switched into managed-care plans as well.

The Austins’ foster daughter will be among them. And Austin worries her daughter will be forced to switch to a therapist an hour’s drive away, since the one she sees nearby is not in the managed-care network.

“She has established a relationship with that counselor. She’s been going there for almost two years and now we have to start all over again,” Austin said. “And that’s trauma. That’s a huge trauma.”

Illinois said even providers that are not in-network when the switch goes into effect can be paid for services during a six-month “continuity of care” period, and insurers will try to expand their networks during that time.

The Austins are trying to be optimistic, but the state’s track record doesn’t give them much assurance.

This story is part of a partnership that includes , Illinois Public Media,  and Kaiser Health News.

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Nothing Jenn and Jason learned in parenting class prepared them for the challenges they’ve faced raising a child prone to violent outbursts.

The couple are parents to two siblings. They first fostered the children as toddlers and later adopted them. (KHN has agreed not to use the children’s names or the couple’s last names because of the sensitive nature of the family’s story.)

In some ways, the family seems like many others. Jenn and Jason’s 12-year-old daughter is into pop star Taylor Swift and loves playing outside with her older brother. He’s 15, and his hobbies include running track and drawing pictures of superheroes. The family lives on a quiet street in central Illinois, with three cats and a rescued pit bull named Sailor.

Jenn described their teenage son as a “kind, funny and smart kid,” most of the time.

But starting when he was around 3 or 4 years old, even the smallest things — like being told to put on his swimsuit when he wanted to go to the pool — could set off an hours-long rage.

“In his room, his dresser would be pushed across the other side of the room,” Jason said. “His bed would be flipped up on the side. So, I mean, very violent. We’ve always said it was kind of like a light switch: It clicked on and clicked off.”

Jenn and Jason said their son’s behavior has gotten more dangerous as he has gotten older. Today he’s 6 feet tall — bigger than both of his parents.

Jenn said most of the time her son directs his initial anger and aggression toward her. But when the 15-year-old has threatened to hit her, and Jason has intervened, the teen has hit his father or thrown things at him.

“The way he will look at me is just evil,” Jenn said. “He has threatened to slap me in the face. He’s called me all sorts of horrible names. After an incident like that, it’s hard to go to sleep, thinking, ‘Is he going to come in and attack us while we’re sleeping?'”

People who are victims of domestic violence are advised to seek help. But when the abuse comes from your own child, some parents have said there is a lack of support, understanding and effective interventions to keep the family safe.

While research is limited, a of the literature found child-on-parent violence is likely a major problem that’s underreported.

Jenn said she’s concerned about everyone’s safety and worries about her 12-year-old daughter being exposed to recurrent violence in their home.

The stress has taken a significant mental and emotional toll on Jenn. She sees a therapist to cope with the violence at home and to deal with her anxiety.

“There are days when it’s hard to breathe,” Jenn said. “You just feel it in your chest — like, I need a breath of air, I’m drowning. We say to each other all the time, ‘This is insanity. How can we live like this? This is out of control.'”

Blamed And Shamed Into Silence

It’s hard to know exactly how common Jenn and Jason’s experience is, since research is sparse. In one nationally representative of roughly 600 U.S. families, about 1 in 11 reported at least one incident of an adolescent child acting violently toward a parent in the previous year. In about a third of those cases, the violence was severe — ranging from punching, kicking or biting to the use of a knife or gun.

Other more recent estimates of the prevalence of child-on-parent violence range of families, which means several million U.S. families could be affected.

A 2008 by the U.S. Justice Department found that while most domestic assault offenders are adults, about 1 in 12 who come to the attention of law enforcement are minors. In half of those cases, the victim was a parent, most often the mother.

who are abused or witness domestic violence do not go on to become violent themselves, and while most people with mental illness are , those life experiences have been identified as risk factors for children who abuse their parents.

is a clinical social worker in the Seattle area who has worked with hundreds of families dealing with a violent child. Along with her colleague Gregory Routt, she developed a family violence intervention program for the juvenile court in King County, Wash., called .

Anderson said, in her experience, many parents feel ashamed about their situation.

“They don’t want to tell their friends or their family members,” Anderson said. “They do feel a lot of self-blame around it: ‘I should be able to handle my child. I should be able to control this behavior.'”

Anderson said many of the incidents take place at home, where the assaults are hidden from the public eye. That contributes to the lack of public awareness about the issue and makes it even harder for affected parents to find support.

“The whole issue becomes perceived as being the parent’s problem and the parent is to blame for the youth’s behavior,” Anderson said. “I think the main issue is that we need to talk about this. We need to talk — be willing to put it out there and make it an important issue and bring resources together for it.”

Unpredictable Anger

Jenn said that she has talked to her son’s therapists about why he has such trouble regulating his emotions, and they’ve told her it could be linked to the severe trauma he experienced as a baby and toddler.

When the couple began fostering the siblings in late 2007, the boy was 3 and his sister younger than 1. They had been removed from the home of their birth parents, where police were regularly called for drug and domestic violence issues. Jenn said her son remembers being beaten by men in his home and watching as his biological mom cut herself.

Jenn and Jason started their son in therapy at a young age, and he has been diagnosed with , PTSD, attention deficit hyperactivity disorder and autism.

The teen has attended art therapy and equine therapy regularly for years. He also participated in a mentorship program and attended a school designed for children with behavioral health needs. Jenn and Jason participated in family therapy sessions with their son, where they learned coping skills and practiced de-escalating situations at home.

The teen was also prescribed medication to help regulate his emotions.

Jenn said her son enjoyed going to therapy and seemed to be making some progress, but his anger remained unpredictable.

During the worst of the conflicts, the teen has kicked holes in walls and broken appliances. He has attempted to run away from home and created weapons to try to hurt his parents and himself. In recent years, Jenn and Jason have had to call police to their house about once a month to get help restraining their son. They’ve also sometimes had to have him admitted to the hospital for brief psychiatric stays.

‘Seems Like It’s Not Enough’

Keri Williams is a writer in North Carolina who advocates for parents raising children who have trauma-related behavioral issues, including attachment disorders that can manifest as intentional violence directed toward parents.

Williams’ own son became so violent that her family had to place him in a residential facility at age 10. He’s now 18.

“I actually thought I was the only person going through it,” Williams said. “I had no idea that this was actually a larger issue than myself.”

Williams manages a and where parents like herself — who feel isolated and unsure of where to turn — can find others who can relate.

Many parents she meets online struggle to accept that they’re dealing with a serious domestic violence issue, she said.

“You just don’t want to think like that,” Williams said. “That’s just not how our culture is and how parents perceive things. And that denial actually is what keeps parents from getting their kids help.”

Jenn — the mother of the 15-year-old in Illinois — said parenting her son often feels like being stuck in an abusive relationship.

“But it’s different when it’s your son,” she said. “I don’t have a choice. I can’t just, you know, shove him away or break up with him.”

Jenn said anytime she sees a news story about a child who has killed a parent, she worries. Such events are extremely rare, and Jenn doesn’t want to think her son is capable of that.

“But, unfortunately, the reality is, when he is in those rages and in those meltdowns, he really isn’t thinking straight, and he’s very impulsive,” Jenn said. “So, it’s very scary.”

Despite all the challenges, she and her husband both said that adopting their son has brought them a lot of joy.

“It’s made me a better, stronger person, a better and stronger wife and teacher,” Jenn said.

But, she adds, she wishes there were more effective treatments that could help kids like her son live safely in the community and more places where traumatized parents could turn to find help.

“I feel like we’re doing everything that we can for him, but it just seems like it’s not enough,” Jenn said.

A Difficult Decision

Just before the beginning of the school year, Jenn and Jason made the difficult decision to send their son to a residential facility for children with severe behavioral health issues. He’s living there now.

The couple wrestled with that choice for some time. The boy had already spent almost three years in residential treatment all told, starting when he was 10. He’d moved back home last year because they thought he was ready.

But the family continued to deal with almost-daily standoffs involving verbal threats, angry outbursts and property destruction.

The boy’s 12-year-old sister said she has mixed feelings about her brother leaving home again to reenter residential treatment.

“It makes me feel happy and sad,” she said, “because, well, I love my brother. And I know he’ll be getting the help he needs.”

She’s comforted knowing her parents will be safe but said she’ll miss her brother a lot.

“I just love him,” she said. “And I don’t want to see him go through that.”

This story is part of a partnership that includes , , and Kaiser Health News.

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But now he worries about the future of his 21-year-old-son, who has lived in central Illinois since he was a toddler. José’s son has a criminal record, which could make him a . KHN is not using the son’s name because of those risks and is using the father’s middle name, José, because both men are in the U.S. without legal permission.

José’s son was diagnosed with schizophrenia and bipolar disorder last year and has faced barriers to getting affordable treatment, in part because he doesn’t have legal status. His untreated conditions have led to scrapes with the law.

Mental health advocates say many people with untreated mental illness run the risk of cycling in and out of the criminal justice system, and the situation is particularly fraught for those without legal status.

“If he gets deported, he’d practically be lost in Mexico, because he doesn’t know Mexico,” said José, speaking through an interpreter. “I brought him here very young and, with his illness, where is he going to go? He’s likely to end up on the street.”

Legal Troubles

José’s son has spent several weeks in jail and numerous days in court over the past year.

On the most recent occasion, the young man sat nervously in the front row of a courtroom in Illnois’ Champaign County Courthouse. Wearing a white button-down shirt and dress pants, his hair parted neatly, he stared at the floor while waiting for the judge to enter.

That day, he pleaded guilty to a criminal charge of property damage. The incident took place at his parents’ house earlier this year. He had gotten into a fight with his brother-in-law and broke a window. His father said it was yet another out-of-control moment from his son’s recent struggles with mental illness.

Before beginning proceedings, the judge read a warning aloud — a practice that is now standard to make sure noncitizens are aware they could face deportation (or be denied citizenship or reentry to the U.S.) if they plead guilty in court.

José’s son received 12 months of probation.

After the hearing, he said that his life was good just a couple of years ago: He was living on his own, working and taking classes at a community college. But all that changed when he started hearing voices and began struggling to keep a grip on reality. He withdrew from his friends and family, including his dad.

One time, he began driving erratically, thinking his car was telling him what to do. A month after that episode, he started having urges to kill himself and sometimes felt like hurting others.

In 2018, he was hospitalized twice and finally diagnosed with schizophrenia and bipolar disorder.

José said that during this time, his son — who had always been respectful and kind — grew increasingly argumentative and even threatened to hurt his parents. The psychiatric hospitalizations didn’t seem to make a difference.

“He asked us for help, but we didn’t know how to help him,” José said. “He’d say, ‘Dad, I feel like I’m going crazy.'”

José’s son said he met with a therapist a few times and took the medication he was prescribed in the hospital. He was also using marijuana to cope, he said.

The prescribed medication helped, he said, but without insurance he couldn’t afford to pay the $180 monthly cost. When he stopped the meds, he struggled and continued having run-ins with the police.

Undocumented And Uninsured

For people who are both undocumented and living with a mental illness, the situation is “particularly excruciating,” said , an attorney and advocate with the Legal Council for Health Justice in Chicago who represents many clients like José’s son.

“If you have a mental illness that makes it difficult for you to control behaviors, you can end up in the criminal justice system,” Chapman said.

People with mental illness make up only a of violent offenders — they are actually more likely, compared with the general population, to be  of violent crime.

Chapman said the stakes are extremely high when people without legal status enter the criminal justice system: They risk getting deported to a country where they may not speak the language, or where it’s even more difficult to obtain quality mental health care.

“It could be a death sentence for them there,” Chapman said. “It’s an incredible crisis, that such a vulnerable young person with serious mental illness falls through the cracks.”

An estimated people under age 65 who live in the U.S. are ineligible for Medicaid or marketplace coverage under the Affordable Care Act because of their immigration status, according to the Kaiser Family Foundation. (Kaiser Health News is an editorially independent program of the foundation.)

Among them are those who are undocumented and other immigrants who otherwise do not fall into one of the as a lawful U.S. resident. People protected from deportation through the federal government’s Deferred Action for Childhood Arrivals policy, or DACA, also are for coverage under those programs.

For many people in all those groups, affordable health care is out of reach.

Some states have opened up access to Medicaid to undocumented children, including Illinois, California, Massachusetts, New York, Oregon, Washington and the District of Columbia, the National State Conference of Legislatures. But residents lose that coverage at age 19, except in California, which recently expanded eligibility .

For those who can’t access affordable health insurance because of their undocumented status, medical care is largely limited to emergency services and treatments covered by charity care or provided by community health centers.

It’s unclear how many people have been deported because of issues linked to mental illness; good records are not available, said , an attorney for immigrants’ rights with the Los Angeles-based pro bono law firm Public Counsel. But from the American Civil Liberties Union suggest that tens of thousands of immigrants deported each year have a mental disability.

Inlender, who represents people with mental disabilities in deportation hearings, said that when the lack of access to community-based treatment eventually leads to a person being detained in an immigration facility, that person risks further deterioration because many facilities are not equipped to provide the needed care.

On top of that, she said, immigrants facing deportation in most states don’t generally have a right to public counsel during the removal proceedings and have to represent themselves. Inlender points out that an immigrant with a mental disability could be particularly vulnerable without the help of a lawyer.

(Following a , the states of Washington, California and Arizona did establish a right to counsel for immigrants with severe mental illness facing deportation. For those in other states, a is designed to provide the same , but it’s only for certain detained immigrants.)

Medicaid For More People?

Chapman and other advocates for immigrants’ rights say expanding Medicaid to cover everyone who otherwise qualifies — regardless of legal status — and creating a broader pathway to U.S. citizenship would be good first steps toward helping people like José’s son.

“Everything else is kind of a ‘spit and duct tape’ attempt by families and advocates to get somebody what they need,” Chapman said.

Critics of the push to expand Medicaid to cover more undocumented people object to the costs, and argue that the money should be spent, instead, on those living in the country legally. (California’s move to expand Medicaid through age 25 will cost the state around , according to some estimates.)

As for José’s son, he recently found a pharmacy that offers a cheaper version of the prescription drug he needs to treat his mental health condition — and he’s feeling better.

He now works as a landscaper and hopes to get back to college someday to study business. But he fears his criminal record could stand in the way of those goals, and he’s aware that his history makes him a target for immigration sweeps.

José said his greatest fear is that his son will end up back in Mexico — away from family and friends, in a country he knows little about.

“There are thousands of people going through these issues … and they’re in the same situation,” José said. “They’re in the dark, not knowing what to do, where to go or who to ask for help.”

Christine Herman is a recipient of a Rosalynn Carter fellowship for mental health journalism. Follow her on Twitter: .

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When Toni and Jim Hoy adopted their son Daniel through the foster care system, he was an affectionate toddler. They did not plan to give him back to the state of Illinois, ever.

“Danny was this cute, lovable little blond-haired, blue-eyed baby,” Jim said.

Toni recalled times Daniel would reach over, put his hands on her face and squish her cheeks. “And he would go, ‘You pretty, Mom,’ ” Toni said. “Oh, my gosh, he just melted my heart when he would say these very loving, endearing things to me.”

But as Daniel grew older, he changed. He began to show signs of serious mental illness that eventually manifested in violent outbursts and nearly a dozen psychiatric hospitalizations, starting at age 10. Doctors said he needed intensive, specialized care away from home — institutional services that cost at least $100,000 a year.

The family had private insurance through Jim’s job, and Daniel also had Medicaid coverage because he was adopted. But neither insurance would pay for that treatment. Exhausted and desperate, the Hoys decided to relinquish custody to the state. If they sent Daniel back into the foster care system, the child welfare agency would be obligated to pay for the services he needed.

“To this day, it’s the most gut-wrenching thing I’ve ever had to do in my life,” Jim said. He went to the hospital and told Daniel, then 12, that they were legally abandoning him so child welfare could take over. “I was crying terribly. But it was the only way we figured we could keep the family safe.”

Two-thirds of states don’t keep track of how many families give up custody to help a child get mental health services. But a  by the Government Accountability Office found that, back in 2001, families in 19 states relinquished nearly 13,000 children.

Today in Illinois, state records show that dozens of children enter state custody this way each year, despite a  aimed at preventing it. And  collected by the University of Maryland for the federal government finds that Illinois is not alone in failing to address this issue.

Mental health advocates say the problem is one of “too little, too late.” Even when states try to help children get access to treatment without a custody transfer, the efforts come too late in the progression of the children’s illnesses.

The advocates blame decades of inadequate funding for in-home and community-based services across the country — a lack of funding that has chipped away at the mental health system. Without that early intervention, children deteriorate to the point of being needlessly hospitalized and requiring costly residential care.

Until that underlying problem is addressed, child advocates say, the problem of families trading custody for treatment will never truly be solved.

Out Of Options

Daniel grew up as the youngest of four children in Ingleside, north of Chicago. As a baby, he had been severely neglected in his birth family — starved and left for dead. The early trauma Daniel experienced very likely affected his brain development, doctors said.

Toni home-schooled her children until she had to return to work full time in 2005. She said Daniel, who was 10, just fell apart.

“After six weeks of being in a public school classroom — something kids do every day — he couldn’t emotionally handle it and had his first hospitalization,” Toni said.

Daniel’s post-traumatic stress disorder and severe anxiety manifested in violent outbursts.

“He held knives to people’s throats,” Toni said. “He tried putting his fingers and his tongue in the light sockets. He broke almost every door in the house.”

In the car, there were times he’d reach over and grab the wheel while Toni was driving, to try to force the car into oncoming traffic. Other times, he would lash out at his siblings.

“At the same time, he’s a little boy,” she said. “He didn’t want to be that way. He didn’t like being that way.”

Despite Toni and Jim’s efforts to help their son with therapy and medication, the violence escalated, and Daniel was repeatedly hospitalized.

Although his doctors and therapists said he needed residential treatment, which would run at least $100,000 a year, both the family’s private health insurance, and Daniel’s secondary Medicaid coverage, denied coverage.

So the Hoys applied for a state grant meant for children with severe emotional disorders. They also asked for help from Daniel’s school district, which is supposed to cover a portion of the costs when students need long-term, off-site care. They were denied both.

“We were told we had to pay out-of-pocket for it,” Toni said.

Then one night, Daniel picked up his brother Chip, threw him down the stairs and punched him over and over before their dad pulled the boys apart.

Daniel went back to the hospital for the 11th time in two years. That’s when the Illinois Department of Children and Family Services gave the Hoys an ultimatum.

“[They] basically said, ‘If you bring him home, we’re going to charge you with child endangerment for failure to protect your other kids,'” Toni remembered. “‘And if you leave him at the hospital, we’ll charge you with neglect.'”

“If any of our other kids got hurt once we brought him home, they would take the other kids,” Jim said. “They put our backs against the wall, and they didn’t give us any options.” So the couple left Daniel at the hospital.

Once the state’s child welfare agency steps in to take custody, the agency will place the child in residential treatment and pay for it, said Robert Farley Jr., a lawyer in Naperville, Ill., another Chicago suburb.

“So you get residential services, but then you’ve given up custody of your child,” Farley said. “Which is, you know, barbaric. You have to give up your child to get something necessary.”

Taking It To The Courts

The Hoys were investigated by DCFS and charged with neglect. They appealed in court and the charge was later amended to a “no-fault dependency,” meaning the child entered state custody at no fault of the parents.

They didn’t know where Daniel was for several weeks, until he phoned from the group home where he had been placed to tell them he was OK.

Losing custody meant Toni and Jim could visit Daniel and maintain contact with him, but they could not make decisions regarding his care.

Over the next three years, Daniel lived at three residential treatment centers. One was five hours away by car. His parents visited as often as they could.

Toni spent months reading up on federal Medicaid law, and she learned the state-federal health insurance program is  all medically necessary treatments for eligible children.

The Hoys hired a lawyer and, two years after giving Daniel up, they sued the state in 2010.

Six months later, they settled out of court and regained custody of Daniel, who was 15 by then. They also got the money to pay for Daniel’s care on their own.

Around the same time, Farley, the attorney, decided to take on the issue on behalf of all Medicaid-eligible children in the state. He filed a , claiming Illinois illegally withheld services from children with severe mental health disorders.

“There [are] great federal laws,” he said. “But someone’s not out there enforcing them.”

In his lawsuit, Farley cited the state’s own data, showing that 18,000 children in Illinois have a severe emotional or behavioral disorder, yet only about 200 receive intensive mental health treatment.

As part of a settlement, a federal judge ordered Illinois Medicaid officials to completely overhaul the state system so that kids get home- and community-based treatment in the early stages of their illness.

The deadline for the state to roll out those changes is this month.

A Law That Didn’t Fix The Problem

While these legal battles were taking place, Illinois lawmakers began their own work to ensure that parents no longer have to relinquish custody to get their kids the help they need.

The Custody Relinquishment Prevention Act, which  in 2015, ordered six state agencies that interact with children and families to intervene when a family is considering giving up custody to get access to services.

“I think the question is: Shouldn’t government be stepping in and doing their job? And they’re not,” said Democratic state Rep. Sara Feigenholtz. “We just want them to do their job.”

B.J. Walker, head of Illinois’ child welfare agency, said the reasons for custody relinquishments are complex.

“If law could fix problems, we’d have a different world,” she said.

In some places, waitlists for residential treatment beds for kids in crisis can be months long.

But even when beds are available, Walker said, some facilities are simply unwilling or unable to take a child who has a severe mental health condition or a co-occurring medical condition.

Out of desperation, some parents will give up custody in the hope of getting their child to the top of the waiting list. But that doesn’t necessarily solve the problem.

´¡²õÌý reports, many foster children languish for months in psychiatric wards that are ill-equipped to provide long-term care because the state is unable to place them in an appropriate therapeutic setting. Walker’s agency is  for allegedly forcing children to “remain in locked psychiatric wards, causing immense harm,” for weeks or months after they’ve been cleared for discharge.

The Underlying Issue

Neil Skene, spokesman for Illinois’ child welfare agency, said there are more options for families like the Hoys today than there were a decade ago. That includes a  launched in 2017 that helps families get access to services.

When the child welfare agency is blamed for this problem, Skene said, it’s like when a pitcher comes in at the end of a losing game to save the day and gets tagged with the loss.

Some mental health advocates agree it’s not fair to fault the state’s child welfare agency for a problem that stems from a chronically underfunded mental health system.

Heather O’Donnell, a mental health advocate who works for Thresholds, a behavioral health treatment provider in Chicago, blames years of inadequate funding in Illinois and across the U.S.

Early-intervention services are either not available or not accessible because insurance companies deny coverage.

“If these kids had leukemia or diabetes, they would’ve gotten help long, long before,” O’Donnell said. “It’s because they have a mental health condition that causes their behavior to be challenging and erratic. And as a society, we sweep these conditions under the rug until there’s a crisis. We just wait for tragedy.”

“What Illinois needs to put into place is a system that helps these families early on, so that these kids never get hospitalized,” O’Donnell said.

, who has been studying the problem of custody relinquishment for decades, agrees. She is the lead researcher on a  — commissioned by the federal government and carried out by the University of Maryland — that explores why the problem persists.

Stroul said other states, including Georgia and New Jersey, have passed laws and stepped up efforts to help children get treatment while in parental custody.

“But those strategies, in and of themselves, are not sufficient unless there are home- and community-based services available that provide the supports and treatment needed to keep children and families safe in the community,” Stroul said.

The Difference Treatment And Family Can Make

Daniel Hoy is now 24 and has been out of residential treatment — and stable — for six years.

He said treatment was tough, and he would not have gotten better without his parents’ love and support. “It was never a question in my mind that my parents would always be there for me,” he said. “Sometimes it’s so hard to do it for yourself. It almost helps to know that I’m doing it for myself, but I’m also doing it for my family and for our relationship.”

Daniel now works nights for a shipping company and lives with his girlfriend and their toddler daughter in central Illinois, not far from his parents.

“I just love having a relationship with him,” Jim said. “I feel so privileged that [when] he’s having a bad day, he comes over and talks to us about it.”

Toni said, looking back, it’s shameful that families get torn apart by a system that’s supposed to be supportive.

She is grateful they made it through intact. Other families that have gone through this same thing, she said, have lost touch with their child forever. “Kids do need services,” Toni said. “But they also need the support of their families.”

This story is part of NPR’s reporting partnership with  and Kaiser Health News. A longer version of this story appears in  podcast. Christine Herman is a recipient of a Rosalynn Carter fellowship for mental health journalism. 

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