by Abigail Kramer, THE CITY

This article was produced for ProPublica’s Local Reporting Network in partnership with THE CITY. Sign up for Dispatches to get stories like this one as soon as they are published.

Sara Taylor felt the knot in her stomach pull tighter even before she answered the phone. The call was from the hospital taking care of her 11-year-old, Amari. And she knew what they were going to say: Amari was being discharged. Come pick her up right away.

Taylor was sure that Amari — that’s her middle name — wasn’t ready to come home. Less than two weeks earlier, in March 2020, she threatened to stab her babysitter with a knife and then she ran into the street. Panicked, the babysitter called 911. Police arrived, restraining Amari and packing her into an ambulance, which rushed her to the mental health emergency room at Strong Memorial Hospital, not far from her home in Rochester, New York.

This had all become a sickeningly familiar routine. Amari had struggled since she was little, racked by a terrible fear that Taylor — who is her great-aunt and has raised her for most of her life — would leave her and not come back. She often woke up screaming from nightmares about someone hurting her family. During the day, she had ferocious tantrums, breaking things, attacking Taylor and threatening to hurt herself.

Taylor searched desperately for help, signing Amari up for therapy and putting her on waitlists for intensive, in-home mental health services that are supposed to be available to New York kids with serious psychiatric conditions. But the programs were full, and it took months to get in.

During Amari’s worst episodes, Taylor had little choice but to call 911 — which Taylor, who is Black, said made her nauseous with fear. She and Amari live just a few miles from the block where Daniel Prude, a Black man with a history of paranoia and erratic behavior, was hooded and pinned to the ground by police until he stopped breathing, in a 2020 incident that began after his brother called 911 for help. Prude died days later at the hospital. In 2021, a video went viral that showed Rochester police officers handcuffing a 9-year-old Black girl and pepper-spraying her in the face while she sat, sobbing, in the back of a squad car. Every time police entered her home, Taylor was terrified that Amari would end up hurt or dead.

“We know that Black children with mental illness are criminalized,” Taylor said. “When you have men with guns coming into your house to handle your sick child, that’s frightening.”

Several months earlier, in 2019, Taylor had filled out paperwork to apply for a place where she thought Amari would be safe: a residential treatment facility for kids with very serious mental health conditions. But the application was still pending in March 2020, and Taylor had no idea how long it might be before Amari got a spot.

Since the early 1980s, New York’s residential treatment facilities have served as an option of last resort for very sick children and adolescents, after outpatient and community-based services have failed. Like psychiatric hospitals, they provide round-the-clock medical and mental health care, but they are designed for much longer stays. Kids typically end up in them after cycling through emergency rooms and hospital beds without getting better. Often, they’ve had multiple encounters with police and their families see residential treatment as a last-ditch chance to get help before they end up in a juvenile lockup — or worse.

In the past 10 years, however, more than half of New York’s residential treatment facility beds for kids have shut down, with the total bed count plummeting from 554 in 2012 to just 274 this year. Sick kids often wait months to get into the remaining beds, despite a 2005 federal court settlement in which the state agreed to cut waitlists and make admissions faster.

State officials, who license and regulate residential treatment facilities, have done little to fix the problems, an investigation by ProPublica and THE CITY found. Instead, the officials made bed shortages worse, greenlighting facility closures even as the number of kids in psychiatric crisis soared. In recent years, the state also made the admissions system even more complex, keeping sick kids in limbo while they wait for care.

“Years ago, when you needed to move a kid up” to a residential treatment facility, “it just got done,” said James Rapczyk, who directed mental health programs for kids on Long Island for more than a decade. In the last several years, “the system just froze up.”

The residential treatment facility closures are part of a larger trend. New York has repeatedly promised to fix a mental health care system that officials have acknowledged to be broken, but in fact the state has made it even harder for the sickest kids to find treatment. As we reported in March, New York has shut down nearly a third of its state-run psychiatric hospital beds for children and adolescents since 2014, under a “Transformation Plan” rolled out by former Gov. Andrew Cuomo. At the same time, the state promised to massively expand home-based mental health services designed to prevent kids from getting so sick that they needed a hospital or residential program at all. In reality, those services reach a tiny fraction of the kids who are legally entitled to them.

That’s why, when the hospital called to say that Amari was ready for discharge, Taylor made one of the most difficult decisions of her life: She refused to pick Amari up. Taylor knew that she would be reported to child protective services and investigated for abandoning Amari — and that there was a chance she could lose custody of her altogether. But she was banking on the hope that, if Amari had nowhere else to go, state officials would fast-track her into residential care.

“The last thing I wanted to do was send my little girl away from home,” Taylor said. “But I couldn’t keep her safe.”

Up through the 1930s, children who were violent or psychotic — or even suicidal — were likely to either spend their lives in state-run asylums or be labeled as delinquents and sent to reform schools on the theory that they could be punished into good behavior.

Residential treatment programs appeared in the 1940s, founded on the premise that kids with mental health and behavioral problems were sick, rather than criminal, and needed specialized treatment. Over the next several decades, the model evolved to include a sprawling assortment of group homes, boot camps and therapeutic boarding schools — some with horrific histories of abusing and neglecting children. As of 2020, just under 19,000 kids were living in close to 600 residential treatment centers in the United States, according to federal data.

A few of those programs are run directly by states, but the vast majority are operated by independent providers that survive on a mix of public funds, private insurance reimbursements and patients with deep pockets. Often, insurance covers a stay of a month or two, and then families may be on the hook for anywhere from $50,000 to $200,000 for a year of treatment.

New York created its residential treatment facility program in the early 1980s as an option for young people who tend to get kicked out of other settings. In a typical year, more than 80% of kids in the facilities are physically aggressive; about 60% have histories of running away. When young people are admitted, the state nearly always enrolls them in Medicaid, the public insurance program, which reimburses providers $500 to $725 for each day of stay. Kids live in dorms, attend full-day schools and do art and recreational therapy, in addition to traditional counseling.

After a surge in the use of residential treatment in the 1980s and 1990s, however, advocates and the federal government have pushed to reduce the number of kids in institutions. This is partly because of new research: Studies show that young people who receive intensive mental health services at home have better outcomes — at far lower costs — than those who are removed from their families and communities. It’s also because kids in institutions are especially vulnerable to abuse. New York’s residential treatment facility providers have been sued at least five times in the past 10 years by kids who say they were sexually or physically abused by staff or other patients. (Four of the cases are still open; one was closed with no finding on the facts.)

A decade ago, the Cuomo administration announced a plan to cut psychiatric hospital beds. Residential treatment facilities warned state officials that they might have to close beds down, too. Reimbursement rates hadn’t gone up in years, and providers couldn’t pay enough to attract employees, according to a 2013 report commissioned by a coalition of mental health care agencies.

Rich Azzopardi, a spokesperson for Cuomo, told THE CITY and ProPublica that facility closures were part of “a national movement away from one-size-fits-all institutionalization and redirecting resources toward out-patient treatment.”

This year, thanks to a budget surplus and an infusion of federal money, the state legislature approved increases to funding for residential treatment facilities — up to about $25 million, in addition to nearly $9 million for COVID-19 relief and employee recruitment. The state also earmarked funds to open 76 new beds where kids can stay short-term during emergencies, according to the Office of Mental Health. But much of that new money has yet to reach providers, some of whom have lost hundreds of thousands of dollars on the programs in recent years.

Keeping staff in place is a persistent challenge. Residential treatment facilities rely on workers who earn as little as $15 per hour — not enough to convince most people to work with kids who are confrontational and sometimes violent, said Cindy Lee, the CEO of OLV Human Services, which runs a residential treatment facility in Lackawanna, New York. “Our wages are not competitive with Walmart, Tim Hortons, Burger King. You can go work an eight-hour shift at Target for more money, no mandated overtime and not be challenged by children with trauma.”

The 2013 report’s alarm bell went unheeded. By 2020, three facilities had shut down, while others cut back on beds. Then, in 2021, the system went into freefall when The Jewish Board of Family and Children’s Services — one of the state’s largest providers of mental health care for kids, and one of just a few agencies to run residential programs in or near New York City — got out of the residential treatment facility business altogether, closing three sites in the Bronx and Westchester County.

In addition to budget deficits, the facilities had faced several “programmatic concerns,” including excessive use of restraints, kids going AWOL and allegations of serious abuse, according to The Jewish Board’s closure application. But the model had also become obsolete, Dr. Jeffrey Brenner, the agency’s CEO, told ProPublica and THE CITY. The Jewish Board is expanding other programs that keep kids close to their families and get them home faster, Brenner said.

By law, proposed residential treatment facility closures must be reviewed by a state oversight board called the Behavioral Health Services Advisory Council, which hears petitions and makes recommendations to New York’s mental health commissioner. In September 2021, when The Jewish Board presented the council with its closure plan, however, all of the residents had already been discharged. At the Bronx site, staff had vacated the premises and the parking lot was stacked with moving boxes.

During the council meeting, members discussed their concerns about the disappearance of residential treatment facility beds. Michael Orth, the commissioner of the Westchester County Department of Community Mental Health, said that referrals had increased in the region, and that facility closures left “significant gaps” in care.

In the end, however, the council unanimously voted yes on The Jewish Board’s closure proposal. “Telling folks to stay open when it’s fiscally unfeasible makes no sense,” another council member said.

In response to questions about the timing of the closure application, a Jewish Board spokesperson wrote that the agency had worked with the Office of Mental Health, “diligently obtaining the required approvals at every stage of the process of closing down our three RTF programs.”

The Office of Mental Health did not address the timing of the closure application submission, but said that all of the children from the Jewish Board facilities were appropriately discharged.

Amari was 11 months old when she came to live with Taylor. Her biological mother — Taylor’s niece — was 18 and “so smart and capable,” Taylor said, but she was also alone and struggling with a depression that seemed to suffocate her after Amari was born. She had dropped out of high school and was bouncing from house to house when her sisters — Amari’s aunts — asked Taylor to take the baby in.

Taylor’s own son was grown. The idea of raising another child seemed unimaginable, but she didn’t want to see Amari end up in foster care. On Memorial Day weekend in 2009, she met her nieces, with Amari, in Erie, New York. “They gave me a $100 bill, a child carrier and a gym bag and said, ‘Here she is.’ I cried like a baby,” Taylor said.

At first, Amari saw her mom by video every night, but the calls faded away. She started calling Taylor “mommy.”

From the beginning, she had a terrible fear of separation. She sobbed inconsolably when Taylor left her at day care in the mornings, and she threw toys and hit other kids. As she got older, she seemed to have trouble focusing and following simple instructions. Her pediatrician prescribed her medication for ADHD when she was 4.

Later, social workers would make lists of Amari’s strengths. She loves her family and has a great sense of humor. Even at her most recalcitrant, she likes showing off her gymnastics moves. And she has very big ambitions: When she grows up, she plans to be a rapper, a nurse and an actor, she said in one clinical interview. But she was also lonely. At school, she sat by herself most of the time. At home, her tantrums spun wildly out of control. She’d exhaust herself, sobbing, “I want my mom. Why doesn’t she want me?”

Taylor, left, has raised Amari for most of the girl’s life. Since she was little, Amari has struggled with a fear that Taylor would leave her and not come back. (Sarah Blesener for ProPublica)

When Amari was 9, Taylor took her to a therapist, who helped to get her approved for in-home mental health services, including a crisis-response team that would come during emergencies and a specialist who would work with her on coping and social skills. But the waitlist was more than six months long, and by the time Amari finally got into the program, everything had fallen apart.

It was the spring of 2019, and Amari was 10 years old. Her mother came for a visit, but when she left, she didn’t answer or return Amari’s phone calls. The family’s pastor, whom Amari had known since she was a baby, died suddenly. And then Taylor went on a business trip, leaving Amari with a cousin. When Taylor came back, Amari told her that the cousin’s boyfriend had molested her.

Over the next 11 months, “our lives were chaos,” Taylor said. Amari had always been a bad sleeper; now she refused to get up in the mornings. When Taylor dragged her out of bed, she’d throw things, punch the walls, grab onto Taylor’s neck and refuse to let go. Sometimes, she told clinicians later, a “bad emoji” would tell her to do things like run out of the house, into the street. More than once, she jumped out of Taylor’s car and into traffic.

After Daniel Prude’s death, the City of Rochester — along with many other jurisdictions, including New York City — promised to transform how emergency services responded to people experiencing mental health crises. Carlet Cleare, a spokesperson for the City of Rochester, told THE CITY and ProPublica that police officers participate in numerous mental health courses and training activities, and that all uses of force are reviewed by supervisors. In the coming year, the city will add staff to its crisis intervention programs, Cleare wrote in a statement.

Those efforts, however, remain small and limited. The reality for most families is that, if they can’t physically contain a child who is threatening to hurt themselves or someone else, there is no option except to call 911 and wait for police.

What happens next depends on who shows up at the door, Taylor said. Once, she and Amari got lucky. An officer who happened to have an autistic child saw Amari rushing at Taylor. Instead of putting his hands on her, he got between the two of them and talked Amari down.

Other police officers got physical far too fast, Taylor said. “They would handcuff her, manhandle her. I would be crying.”

By 2020, Taylor had left her job in order to take care of Amari. She started organizing support groups and advocating for families of color with kids in the mental health system, who are often reluctant to seek help because they are afraid that they’ll be reported to child protective services or that their kids will be treated like criminals, she said.

After Prude’s death, “Black and brown parents were terrified,” Taylor said. “Nobody with a Black child with a mental health condition was calling the police.”

Taylor, too, decided that no matter what happened with Amari, she would handle it on her own. But then, just two months after the video of Prude came out, Amari called 911 herself, intending to report Taylor for refusing to let her out of the house. When police arrived, Taylor could feel her heart pounding, she said. She tried to force the image of Prude, face down on the sidewalk and suffocating, out of her mind.

“I went to the door as articulate as I can be, because I can’t have them coming in my house harming my child,” Taylor said. “I said, ‘My child is highly dysregulated. This is not a criminal justice issue; this is mental health. I need you to take it easy when you come in my house.’”

At first, the officers tried to talk to Amari, but when she ran toward Taylor, they grabbed her and forced her into handcuffs, Taylor said. “I’m frantic, begging them to take it easy, telling her to calm down, saying, ‘Don’t touch her like that.’ They take her outside — rough, like a criminal. I’m crying, ‘Stop, stop!’”

Amari struggled, refusing to get in the police car, Taylor said. “I’m watching them physically wrestle each other. It was like flashbacks. What’s going to happen when they get her in the car?”

Eventually, an ambulance arrived, and Amari climbed into it, unhurt. But Taylor thinks a lot about what it must have been like for Amari — how much it must have scared her, and what it taught her about herself — to be physically overpowered, again and again, by adults with guns, nearly all of them men, most of them white.

It’s damage that can’t be undone, Taylor said. “If I’m traumatized as a parent when they handcuff her and take her out like a criminal, can you imagine how she feels? This child who from the age of 10 has had multiple restraints and arrests? I can’t even imagine what that’s like for her.”

New York’s application system for residential treatment facilities has been a subject of contention for a long time. In 1999, the Legal Aid Society filed a lawsuit against New York state’s Department of Health and its Office of Mental Health on behalf of kids who were sitting on waitlists for residential care. Many kids waited more than five months for a bed, the lawsuit alleged; some waited over a year. During that time, they were either locked in restrictive hospital units or left unsafe at home. Some ended up in juvenile or adult jails.

The state settled with plaintiffs in 2005, with a requirement that the state must place kids in residential treatment facilities within 90 days of certifying them as eligible. A judge encouraged officials to solve the problem by opening more beds. Instead, providers and advocates say, the state created a complex, multilayered application system that slows down applications and keeps kids off the waitlist.

“If you deem a kid eligible, you have some responsibility for providing services,” said Jim McGuirk, who recently stepped down as the executive director of Astor Services, which operates a residential treatment facility in Rhinebeck, New York. The state evades that responsibility by doing “whatever you can to reduce the waiting list by not approving people. By making it harder,” he said.

Two years ago on Long Island — in the far corner of New York state from Rochester — a 16-year-old named M (his first initial) spent more than a year in the limbo of the application process. As a little boy, M had watched his dad abuse his mom for years, according to treatment records. After his parents split up, M got violent with his mom, hitting her and threatening to kill her when she didn’t give him what he wanted. It got so bad that his mom would lock herself in the bathroom to hide.

When M was 12, the Office of Mental Health placed him in a community residence — a group home that’s less restrictive and has fewer services than a residential treatment facility. As M got older, however, his behaviors only got worse. He attacked workers and bullied kids who were smaller than him. M “will conduct himself in a charming manner to get what he wants,” according to notes from mental health professionals who treated him, but he “displays no remorse” and “has no empathy.”

In June 2020, M’s treatment team submitted an application for a residential treatment facility. He urgently needed intensive treatment — in a more controlled environment — before he became an adult, his providers said. The first step was to bring his case to a regional outpost of the Office of Mental Health, where a local committee would decide whether to forward it to a second committee, which can authorize kids to be placed in residential treatment facilities.

The rationale for the multiple layers of screening is that these facilities are such restrictive environments that, under federal law, it’s the state’s responsibility to try everything else first. In practice, providers say, the result is constant deferral and delay. If a committee doesn’t make it through all of its pending applications, “Well, wait until next month,” said Christina Gullo, the president of Villa of Hope, a nonprofit mental health care agency in Rochester that closed its residential treatment facility this year because it was running at an annual deficit of over $500,000.

Rather than referring M’s application to the authorization committee, the local committee said that he should try to find a spot at a residential school, paid for by the state Education Department. The schools, however, rejected M because he was too aggressive and his mental health needs were too great. M’s team came back to the Office of Mental Health in October 2020. This time, the local committee declined to advance the application because it had questions about M’s physical health: Was it possible that his neurological issues or sleep apnea caused the behavior problems? Had the family tried getting services through the Office for People With Developmental Disabilities? (The answer was yes — it had turned M down too.)

“My jaw just dropped at that one,” said a family advocate who worked with M’s mom through the process. “It’s a sin that they’re not helping this boy. He’s just falling through the cracks, and he has been for years.”

Finally, on the third submission, the local committee agreed to pass M’s application to the authorization committee, which approved M for placement and sent his information to individual providers. By that time, however, three residential treatment facilities in the region — run by The Jewish Board — were getting ready to close. The shutdowns hadn’t yet been made public, but the facilities were discharging the kids they had, not taking new ones. One by one, the facilities turned M down.

State data shows that delays and denials are common. While the number of applications for spots in residential treatment facilities has gone up since 2018, the share of applications that the committees approved has dropped, from close to 70% in 2018 to just over 50% in the first half of 2021. The percentage that were denied nearly doubled, from 16% to 29%. Close to 20% of committee reviews resulted in a deferral.

And even when kids are authorized for admission, many don’t end up entering residential treatment facilities. In 2020, for example, 444 young people were approved by the authorization committees, but only 364 were actually admitted.

Some of those kids may have gotten the treatment they needed in the community, according to James Plastiras, a spokesperson for the Office of Mental Health. In that case, “the family may decline to proceed with an RTF admission, or the child may no longer meet RTF eligibility criteria,” Plastiras wrote in a statement.

No one would disagree that it’s best for kids to live at home whenever possible, said Rapczyk, who directed the Long Island community residence where M lived. But it doesn’t make sense to close beds when young people still can’t find outpatient care, Rapczyk said. “It was so crazy to me that they were closing all of these places without any contingency plan, in a pandemic, without any hospital beds available and kids’ mental health skyrocketing,” he said. “It was just crazy to me that this was going on.”

For M, time ran out. He aged out of the group home and moved into an adult housing program, which — unlike in the kids’ system — can kick him out if his behavior is too disruptive.

The next stop would be a homeless shelter or jail, M’s mom said. “He never got the help he needed, so what do you expect? The system says, ‘Oh, we’re here to help you,’ but it’s such bullshit. They just give you the runaround.

“My fear is that it’s gonna be a complete train wreck and my son will have a truly horrible life,” she continued. “I think his evils will take him over.”

What Taylor did in the spring of 2020 — refusing to pick Amari up from the hospital — is not so unusual, said Dr. Michael Scharf, chief of the Division of Child and Adolescent Psychiatry at the University of Rochester Medical Center, which encompasses Strong Memorial Hospital.

Amari first went to Strong Memorial in April 2019. She’d woken up in the middle of the night, shaking uncontrollably. Taylor took her to the emergency room, where a security guard scanned her with a wand for potential weapons and escorted her to the hospital’s Comprehensive Psychiatric Emergency Program. A heavy steel door locked shut behind them. Staff sat behind thick glass.

Once kids are inside, they wait — sometimes for hours, sometimes for days. The setup delivers the message that kids with mental health problems are bad rather than sick, Taylor said. “Children with medical conditions — they treat them completely different than children with psychiatric disorders. Our families are blamed; our children are blamed.”

Scharf agrees that the emergency room is not a good place for kids in crisis. But like the rest of New York, Rochester faces a crisis-level shortage of outpatient mental health care. The hospital’s outpatient clinic — the largest in the region — gets calls from about 100 families a week looking for services, and it typically has at least 125 kids on a waiting list, according to a hospital spokesperson.

Without access to outpatient care, the sickest kids often cycle in and out of hospital beds, where providers focus on treating their most acute symptoms, not on addressing long-term behavioral problems.

The cycle is exhausting and scary for kids and their families, Scharf said. Often, hospital staff get involved in the search for residential treatment, but there are never enough beds available. “It’s almost silly to be in some of these meetings” with the Office of Mental Health, Scharf said. “They will say, ‘This child is on our highest-needs, crisis list.’ The parent thinks, ‘OK, that means something is going to happen.’ But there’s 70 people on that list. That list doesn’t necessarily mean a bed is coming.”

A stack of Taylor’s files concerning Amari (Sarah Blesener for ProPublica)

In a way, Amari was fortunate. In April 2020, less than a month after Taylor refused to pick her up from the hospital, the Office of Mental Health worked with a social service agency called Hillside Family of Agencies to get her into a residential treatment facility in Rochester.

For Taylor, it was an excruciating victory. She believed that if the mental health system had done its job, Amari would never have had to leave home. But she also blamed herself. Amari’s worst fear was being abandoned, and now Taylor was dropping her off and driving away.

She remembers sobbing all the way home. At one point, she pulled the car over to throw up. “The guilt and shame runs so deep,” she said. “I was sick in bed for two days.”

At the facility, Amari cried for Taylor and begged to go home. Many of her behaviors got worse. Counselors wrote that she frequently tried to run away, was aggressive with her peers and made homicidal threats. She would yell and swear, pounding on the walls and flipping tables. She told an evaluator that she often wanted to hurt herself. After a few weeks, she was placed on a “prevent from leave” status, meaning that staff should physically restrain her if she tried to leave a building without permission. Even so, there was a night when she ran out of the facility and was left outside, unsupervised, with a 17-year-old boy, until morning.

To Taylor, it seemed like she was constantly getting calls from staff saying that Amari had been restrained. She thought about bringing Amari home, but then what? Ending up in a juvenile justice facility would surely have been worse, she thought.

Maria Cristalli, Hillside’s CEO, told THE CITY and ProPublica that staff rely on nonphysical interventions whenever possible, using restraints only as a last resort. “Hillside is committed to maintaining therapeutic environments that are free of violence and coercion,” Cristalli wrote. “We do not tolerate unnecessary, inappropriate, or excessive physical intervention.”

In November 2020, Amari was in such constant crisis that the residential treatment facility staff applied to get her into a state-run psychiatric hospital for acute care. The hospital was full, so Amari waited more than a month to get in. When she came back to Hillside, the facility told Taylor that Amari needed an even higher level of supervision. They wanted to transfer her to their Intensive Treatment Unit — a residential treatment facility that was more restrictive, with a lower staff-to-resident ratio.

At first Taylor said no. She spent weeks trying to secure in-home mental health services, but no one could promise her anything other than what Amari had been getting before. Eventually, she gave up and agreed to the higher-level facility. Beds were full there, too. It took six months before a spot opened up for Amari.

Last month marked two years since Amari left home. Taylor hopes she’ll come back in the fall, in time to start a new school year. She’s given up the idea that Amari will get the services she needs at home — or that anyone, really, will be there to help her.

“At this point, I’m just trying to keep her alive,” Taylor said, her voice breaking. “I have a very sick child. She wants to come home. How do I keep her alive?”

Taylor is hopeful that Amari will be able to return home for school in the fall. (Sarah Blesener for ProPublica)

Mollie Simon contributed research.

This post was originally published on Articles and Investigations – ProPublica.

by Sarah Smith

ProPublica is a nonprofit newsroom that investigates abuses of power. Sign up for Dispatches, a newsletter that spotlights wrongdoing around the country, to receive our stories in your inbox every week.

When it comes to reproductive care, Mississippi has a dual distinction. The state spawned the law that likely will lead to the Supreme Court striking down Roe v. Wade. It is also unique among Deep South states for doing the least to provide health care coverage to low-income people who have given birth.

Mississippians on Medicaid, the government health insurance program for the poor, lose coverage a mere 60 days after childbirth. That’s often well before the onset of postpartum depression or life-threatening, birth-related infections: A 2020 study found that people racked up 81% of their postpartum expenses between 60 days and a year after delivery. And Mississippi’s own Maternal Mortality Review Committee found that 37% of pregnancy-related deaths between 2013 and 2016 occurred more than six weeks postpartum.

Every other state in the Deep South has extended or is in the process of extending Medicaid coverage to 12 months postpartum. Wyoming and South Dakota are the only other states where trigger laws will outlaw nearly all abortions if Roe falls and where lawmakers haven’t expanded Medicaid or extended postpartum coverage.

“It’s hypocrisy to say that we are pro-life on one end, that we want to protect the baby, but yet you don’t want to pass this kind of legislation that will protect that mom who has to bear the responsibility of that child,” said Cassandra Welchlin, executive director of the MS Black Women’s Roundtable, a nonprofit that works at the intersection of race, gender and economic justice.

Efforts to extend coverage past 60 days have repeatedly failed in Mississippi — where 60% of births are covered by Medicaid — despite support from major medical associations and legislators on both sides of the aisle.

Mississippi House Speaker Philip Gunn, a Republican, said shortly after he killed the most recent bill that would’ve extended postpartum coverage that he’s against expanding any form of Medicaid. “We need to look for ways to keep people off, not put them on,” he told The Associated Press in March. When asked about the issue during a May 8 interview on CNN, Mississippi Gov. Tate Reeves said, “When you talk about these young ladies, the best thing we can do for them is to provide and improve educational opportunities for them.” (Neither Gunn nor Reeves responded to requests for comment.)

During the pandemic, a change in federal rules prevented states from cutting off Medicaid recipients, which has allowed people in Mississippi and elsewhere to retain postpartum coverage beyond 60 days. But at the end of the federal public health emergency declaration — which is set to expire in July 2022 — states will revert to their prior policies. “What we are afraid of is that when that does end, it will go back to what we knew was pre-pandemic health care,” Welchlin said.

We discussed the implications of Mississippi’s post-Roe reality with Welchlin and two other experts in the field: Alina Salganicoff, the Kaiser Family Foundation’s director for women’s health policy, and Andrea Miller, president of the National Institute for Reproductive Health. Their answers have been lightly edited for length and clarity.

What services does Medicaid provide postpartum?

Salganicoff: Typically, everything from assistance if the person is having problems breastfeeding to screening for depression services.

Welchlin: We know the struggles of so many who have had life threatening illnesses such as heart conditions and hypertension. We know of course that Medicaid helps in that.

What have you seen in terms of postpartum needs in Mississippi?

Welchlin: One of the stories that really touched me over the course of this pandemic was that of a mom who already had a child, and she needed access to child care so she could get back and forth to the doctor. During this particular pregnancy she had a severe heart disorder where she couldn’t breathe, and she had to get rushed to the hospital. Because she was so connected to doulas and a supportive care organization like us, she was able to get admitted and sure enough that’s when they diagnosed her with that heart condition. And she was a mom on Medicaid.

What happens when mothers lose Medicaid coverage postpartum?

Miller: Only giving someone two months postpartum doesn’t allow for the kind of continuation of care that you need. If there are indications of problems in the postpartum period, they don’t all necessarily show up within the first two months. And we certainly know that the ability to have a healthy infant and keep an infant healthy is also related to whether you have coverage. The extension to 12 months really allows for that kind of continuum of care.

Welchlin: We know in the state of Mississippi, women die at higher rates, and of course it’s higher for Black women. And so, when women don’t have that coverage, what happens is they die.

What does it mean to not extend postpartum Medicaid coverage if Roe falls?

Miller: These bans on abortion are going to be layered on top of an already-unconscionable maternal and infant health crisis that most particularly impacts those who are struggling to make ends meet. It particularly impacts Black women and other communities of color. … A state like Mississippi that is so clearly wanting to ban abortions — the fact that they refuse to extend basic health care benefits that will help during pregnancy and postpartum just clearly indicates that they are not interested in the health and well-being of women and families and children, that they are purely on an ideological crusade.

Anything else that you wanted to add?

Salganicoff: We’re very focused on that first year of life. But if you’re speaking about a woman who is not going to be able to get an abortion that she seeks and ends up carrying the pregnancy, the supports that she’s going to need and her child is going to need go far beyond the first year of life.

Miller: You can’t have a conversation about legality or soon-to-be illegality of abortion in these states and not have a conversation simultaneously about the existing crisis around maternal and infant health. These things are all interconnected, and that’s why it is so deeply disturbing that the states trying to ban abortion are the same states that are refusing to expand Medicaid under the ACA, that are failing to take advantage of the ability to extend postpartum [coverage] by 12 months, that don’t invest in child care, that don’t invest in education — these are all part of the same conversation.

Welchlin: Audre Lorde said, “There is no such thing as a single-issue struggle because we do not live single-issue lives.” So, abortion access, reproductive justice, voting rights, racial justice, gender equity — these are not separate issues, they are intersecting issues that collectively determine the quality of our lives.

This post was originally published on Articles and Investigations – ProPublica.

by Adriana Gallardo

ProPublica is a nonprofit newsroom that investigates abuses of power. Sign up to receive our biggest stories as soon as they’re published.

The original version of this story, which was co-published with NPR, is available here. The version below contains updated links and statistics and has been condensed for clarity.

In 2017, ProPublica and NPR launched a project shedding light on maternal deaths and near-deaths in the U.S. We explored better ways to track and understand preventable deaths, and the intergenerational trauma caused by childbirth complications and chronic racial disparities in who suffers from them. We heard from more than 5,000 people who endured, or watched a loved one endure, life-threatening pregnancy and childbirth complications, often resulting in long-lasting physical and emotional effects.

These people who sent us their stories frequently told us they knew little to nothing beforehand about the potentially fatal complications that they or their loved ones faced. They wanted to help others. So we decided to publish some of their wisdom.

They told us what they wish they had known ahead of their severe complications: How do I get medical professionals to listen? When are changes in my body normal, and when are they a warning? How do I navigate the postpartum period? In the years since, other readers have told us this advice was critical.

Recent data shows maternal deaths, including deaths in the first six weeks after childbirth, rose in the first year of the pandemic. The increase puts the nation’s maternal mortality rate at 23.8 deaths per 100,000 live births in 2020, up from 20.1 deaths in 2019.

If the U.S. Supreme Court strikes down Roe v. Wade, they’ll do so in a country where pregnancy and childbirth continue to become more dangerous. We’re republishing this advice today, in a shortened and easier-to-navigate format, because self-advocacy and community knowledge are important when systems fail.

Choosing a Provider

“A lot of data on specific doctors and hospitals can be found publicly. Knowing how your physician and hospital rates as compared to others (cesarean rates, infection rates, readmission rates) can give you valuable insight into how they perform. ‘Liking’ your doctor as a person is nice, but not nearly as important as their and their facility’s culture and track record.”

— Kristen Terlizzi, survivor of a 2014 placenta accreta spectrum (a disorder in which the placenta grows into or through the uterine wall) and cofounder of the National Accreta Foundation

“Key pieces of information every woman should know before choosing a hospital are: What are their safety protocols for adverse maternal events? No one likes to think about this while pregnant, and providers will probably tell you that it’s unlikely to happen. But it does happen and it’s good to know that the hospital and providers have practiced for such scenarios and have proper protocols in place.”

— Marianne Drexler, survived a hemorrhage and emergency hysterectomy in 2014

“If a birthing center is your choice, discuss what happens in an emergency — how far away is the closest hospital with an ICU? Because a lot of hospitals don’t have them. Another thing many women don’t realize is that not every hospital has an obstetrician there 24/7. Ask your doctors: If they’re not able to be there the whole time you’re in labor, will there be another ob/gyn on site 24 hours a day if something goes wrong?”

— Miranda Klassen, survivor of amniotic fluid embolism in 2008 and founder/executive director of the Amniotic Fluid Embolism Foundation

Preparing for an Emergency

“A conversation about possible things that could go wrong is prudent to have with your doctor or in one of these childbirth classes. I don’t think that it needs to be done in a way to terrify the new parents, but as a way to provide knowledge. The pregnant woman should be taught warning signs, and know when to speak up so that she can be treated as quickly and accurately as possible.”

— Susan Lewis, survived disseminated Intravascular Coagulation (DIC) in 2016

“Always have somebody with you in a medical setting to ask the questions you might not think of and to advocate on your behalf if your ability to communicate is compromised by being in poor health. … And get emotional support to steel you against the naysayers. It may feel really unnatural or difficult to push back [against doctors and nurses]. Online forums and Facebook groups can be helpful to ensure you’re not losing your mind.”

— Eleni Tsigas, survivor of preeclampsia in 1998 and 1999 and chief executive officer of the Preeclampsia Foundation

“In case you ever are unable to respond, someone needs to step in and be your voice! Know as much thorough medical history as possible, and let your spouse or support person know [in depth] your history as well.”

— Kristina Landrus, survived a hemorrhage in 2013

“Also be sure your spouse and your other family members, like your parents or siblings, are on the same page about your care. And if you aren’t married, who will be making the decisions on your behalf? You should put things in order, designate the person who will be the decision maker, and give that person power of attorney. Other important things to have are a medical directive or a living will — be sure to bring a copy with you to the hospital. I also recommend packing a journal to record everything that happens.”

— Miranda Klassen

“Make a list of your questions and make sure you get the full answer. I went to every appointment the second time around with a notebook. I would apologize for being ‘that patient,’ but I had been through this before and I wasn’t going to be confused again. I wanted to know everything. Honestly, it was as harmful as it was helpful. I knew what I was getting into, which made it much scarier. The first time, my ignorance was bliss. I didn’t realize I almost died until two weeks after I had left the hospital. I didn’t even start researching what had happened to me until months later. The second time I was an advocate for myself. Medical journals and support groups were a part of every single visit. And thankfully, I was in good hands.”

— Carrie Anthony, survived placenta accreta and hemorrhage in 2008 and 2015 as well as placenta previa in the second pregnancy

“Write down what each specialty says to you. … They paraded in on a schedule, checked up on me, asked if I had any questions. I always did, but I regret not writing down what each said each time (along with names!). I got so many different answers regarding how I would be anesthetized, and on the day it all had to happen in an emergency, there were disagreements above me in the OR between the specialists. It was like children arguing on a playground and my life was in danger. Had I kept a more vigilant record of what each specialty reported to me, perhaps prior to the day I could have confronted each with the details that weren’t matching up.”

— Megan Moody, survived placenta percreta (when the placenta penetrates through the uterine wall) in 2016

“People should know that they have a right to ask for more time with the doctor or more follow-up if they feel something is not right. The OB-GYNs (at least in Pennsylvania) are so busy and sometimes appointments are quite quick and rushed. Make the doctors slow down and take the time with you.”

— Dani Leiman, survived HELLP syndrome (a particularly dangerous variant of preeclampsia) in 2011

“You have a legal right to your medical records throughout pregnancy and anytime afterwards. Get a copy of your lab results each time blood is drawn, and a copy of your prenatal and hospital reports. Ask about concerning or unclear results.”

— Eleni Tsigas

Getting Your Provider to Listen

“Understand the system. Ask a nurse or a trusted loved one in the ‘industry’ how it all works. I’ve found that medical professionals are more likely to listen to you if you demonstrate an understanding of their roles and the kind of questions they can/cannot answer. Know your ‘silos.’ Don’t ask an anesthesiologist how they plan on stitching up your cervix. Specialists are often incredibly impatient. You need to get the details out of them regarding their very specific roles.”

— Megan Moody

“If your provider tells you, ‘You are pregnant. What you’re experiencing is normal,’ remember — that may be true. [But it’s also true] that preeclampsia can mimic many normal symptoms of pregnancy. Ask, ‘What else could this be?’ Expect a thoughtful answer that includes consideration of ‘differential diagnoses’ — in other words, other conditions that could be causing the same symptoms.”

— Eleni Tsigas

“They only listen if the pain is a 10 or higher. Most of us don’t understand what a 10 is. I’d always imagined a 10 would feel like having a limb blown off in combat. When asked to evaluate your pain on a scale of 1 to 10, when you are in your most vulnerable moment, it is very hard to assess this logically, for you and for your partner witnessing your pain. I later saw a pain chart with pictures. A 10 was demonstrated with an illustration of a crying face. You may not actually be shedding tears, but you are most likely crying on the inside in pain, so I suggest to always say a 10. My pain from the brain hemorrhage was probably a 100, but I’m not sure if I even said 10 at the time.”

— Emily McLaughlin, survived a postpartum stroke in 2015

“So many women do speak up about the strange pain they have, and a nurse may brush it off as normal without consulting a doctor and running any tests. Be annoying if you must, this is your life. … Thankfully, I never had to be so assertive. I owe my life to the team of doctors and nurses who acted swiftly and accurately, and I am eternally grateful.”

— Susan Lewis

“If you have a hemorrhage, don’t clean up after yourself! Make sure the doctor is fully aware of how much blood you are losing. I had a very nice nurse who was helping to keep me clean and helping to change my (rapidly filling) pads. If the doctor had seen the pools of blood himself, rather than just being told about them, he might not have been so quick to dismiss me.”

— Valerie Bradford, survived a hemorrhage in 2016

Paying Attention to Your Symptoms

“I had heard of preeclampsia but I was naïve. [I believed] that it was something women developed who didn’t watch what they ate and didn’t focus on good health prior and/or during pregnancy. I was in great health and shape prior to getting pregnant, during my pregnancy I continued to make good food choices and worked out up until 36 hours before the baby had to be taken. I gained healthy weight and kept my BMI at an optimum number. I thought due to my good health, I was not susceptible to anything and my labor would be easy. So although I had felt bad for 1 1/2 weeks, I chalked it up to the fact that I was almost 8 months into this pregnancy, so you’re not supposed to feel great. … I walked into my doctor’s office that Friday and not one hour later I was in an emergency C-section delivering a baby. I had to fully be put under due to the severity of the HELLP, so I didn’t wake up until the next day.”

— Kelli Davis, survived HELLP syndrome in 2016

“Understand that severe, sustained pain is not normal. So many people told me that the final trimester of pregnancy is sooo uncomfortable. It was my first pregnancy, I have a generally high threshold for pain, and my son was breech so I thought his head was causing bad pain under my ribs [when it was really epigastric pain from the HELLP syndrome]. I kept thinking it was normal to be in pain and I let it go until it was almost too late.”

— Dani Leiman

“Know the way your blood pressure should be taken. And ask for the results. Politely challenge the technician or nurse if it’s not being done correctly or if they suggest ‘changing positions to get a lower reading.’ Very high blood pressure (anything over 160/110) is a ‘hypertensive crisis’ and requires immediate intervention.”

— Eleni Tsigas

“Please ask for a heart monitor for yourself while in labor, not just for the baby. I think if I had one on, seconds or minutes could have been erased from reaction time by the nurses. They were alerted to an issue because the baby’s heart stopped during labor, and while the nurse was checking that machine, my husband noticed I was also non-responsive. That’s when everything happened.”

— Kristy Kummer-Pred, survived amniotic fluid embolism and cardiac arrest in 2012

After the Delivery

“My swelling in my hands and feet never went away. My uterus hadn’t shrunk. I wasn’t bleeding that bad, but there was a strange odor to it. My breasts were swollen and my milk wasn’t coming in. I was misdiagnosed with mastitis [a painful inflammation of the breast tissue that sometimes occurs when milk ducts become plugged and engorged]. The real problem was that I still had pieces of placenta inside my uterus. Know that your placenta should not come out in multiple pieces. It should come out in one piece. If it is broken apart, demand an ultrasound to ensure the doctors got it all. If you have flu-like symptoms, demand to be seen by a doctor. If you don’t like your doctor, demand another one.”

— Brandi Miller, survived placenta accreta and hemorrhage in 2015

“There is a period in the days and weeks after delivery where your blood pressure can escalate and you can have a seizure, stroke, or heart attack, even well after a healthy birth. You should take your own blood pressure at home if your doctor doesn’t tell you to. … Unfortunately, I went home from [all my postpartum] appointments with my blood pressure so high that I started having a brain hemorrhage. Not one single person ever thought of taking my blood pressure when I was complaining about my discomfort and showing telltale warning signs of [preeclampsia].”

— Emily McLaughlin

“The postpartum period is when a lot of pregnancy-related heart problems like cardiomyopathy emerge. If there is still difficulty breathing, fluid buildup in ankles, shortness of breath and you are unable to lie flat on your back, go see a cardiologist ASAP. If you have to go to an emergency room, request to have the following tests performed: echocardiogram (echo) test, ejection fraction test, B-type natriuretic peptides (BNP), EKG test and chest X-ray test. These tests will determine if your heart is failing and will save your life.”

— Anner Porter, survivor of peripartum cardiomyopathy in 1992

“Rest as much as possible — for as long as possible. Being in too big a rush to get ‘back to normal’ can exacerbate postpartum health risks. Things that are not normal: heavy bleeding longer than 6 weeks, or bleeding that stops and starts again, not producing milk, fevers, severe pain (especially around incision sites), excessive fatigue, and anxiety/depression. If you don’t feel like yourself, get help.”

— Amy Barron Smolinski, a survivor of preeclampsia, postpartum hemorrhage and other complications in three pregnancies in 2006, 2011 and 2012 and executive director of Mom2Mom Global, a breastfeeding support group

“Know that your preexisting health conditions may be impacted by having a baby (hormone changes, sleep deprivation, stress). Record your health and your baby’s in a journal or app to track any changes. Reach out to the nurse or doctor when there are noticeable changes that you have tracked.”

— Noelle Garcia, survived placental abruption (placenta separating from the uterine wall during pregnancy) in 2007

“If your hospital discharges you on tons of Motrin or pain killers, be aware that this can mask the warning signs of headache, which is sometimes the only warning sign of preeclampsia coming on postpartum.”

— Emily McLaughlin

Grappling With the Emotional Fallout

“I wish I had known that postpartum PTSD was possible. Most people associate PTSD with the effects of war, but I was diagnosed with PTSD after my traumatic birth and near-death experience. Almost 6 years later, I still experience symptoms sporadically.”

— Meagan Raymer, survived severe preeclampsia and HELLP syndrome in 2011

“I recommend therapy with a female therapist specializing in trauma. Honestly, I avoided it for 8 months. I was then in therapy for 12 months. I still have ongoing anxiety … but I would be in a very bad place (potentially depression and self-harm due to self-blame) were it not for therapy. It was so hard to admit [what was happening]. I started to get a suspicion when I heard an NPR story about a veteran with PTSD. I thought … that sounds like me. And I started Googling.”

— Jessica Rae Hoffman, survived severe sepsis and other complications in 2015

“The emotional constructs our society puts around pregnancy and childbirth make the ideas of severe injury and death taboo. Childbirth is a messy, traumatic experience. … Many women don’t seek care even when they instinctively believe something is wrong because they’re supposed to ‘be happy.’ Awareness and transparency are so important.”

— Leah Soule, survived a hemorrhage in 2015

“I wish I had understood how significant the impact was on my husband. Emotionally, the experience was much more difficult and long-lasting for him than for me, and it continued to affect his relationship with both me and our baby for quite a while, at a time when I didn’t think it was a thing at all.”

— Elizabeth Venstra, survived HELLP syndrome in 2014

“I would suggest establishing yourself ahead of time with a doula or midwife that can make postpartum visits to your home, which can promote health even if everything goes smoothly. Many communities have those services available if you can’t afford them. [A doula] wasn’t covered through our insurance, but the social worker at the hospital arranged for someone paid for by [San Diego County] to come and do several checks on me and my son, which was very reassuring to both my husband and me.”

— Miranda Klassen

Other Resources

• The Leapfrog Group provides performance data on more than 1,800 hospitals and publishes an annual Maternity Care Report.

• Consumer Reports offers C-section data from more than 1,300 hospitals by ZIP code.

• The California Maternal Quality Care Collaborative’s toolkits of protocols for treating life-threatening obstetric complications include infographics, checklists and extensive backup materials. Register on the site for free access. The Alliance for Innovation on Maternal Health’s offers bundles of similar information in a condensed, downloadable form.

• The Association of Women’s Health, Obstetric and Neonatal Nurses (AWHONN)’s Health4Mom site has a “Save Your Life” campaign, including a one-page checklist, to help new parents recognize post-birth warning signs. The Institute for Perinatal Quality Improvement offers resources for medical professionals.

• Childbirth Connection provides evidence-based information on maternity care.

• The Preeclampsia Foundation’s “Wonder Woman” posts put the U.S. maternal mortality numbers in context and suggest more strategies for self-advocacy.

• Postpartum Support International offers many resources for people suffering from pregnancy-related depression, anxiety and mood disorders. They also have resources for dads.

• Facebook is a gathering place for thousands of people who have experienced life-threatening complications. Many groups are condition-specific or closed to nonsurvivors. One open group worth checking out: The Unexpected Project.

• Some social justice groups advocate to reduce childbirth-related deaths and near-deaths. Many focus on why Black people are disproportionately affected. Those groups include theBlack Mamas Matter Alliance, Moms Rising and the National Birth Equity Collective.

• For more context, check out “Killing the Black Body: Race, Reproduction, and the Meaning of Liberty” by Dorothy Roberts, which was reissued a few years ago in celebration of its 20th anniversary. The new edition includes reflections on its publication and findings, and on the continued escalation of abortion bans across the country.

• For those dealing with complicated medical bills, former ProPublica reporter Marshall Allen offers advice in his book “Never Pay the First Bill: And Other Ways to Fight the Health Care System and Win.”

Help us continue reporting on pregnancy and childbirth. Have you had an experience with prenatal genetic testing? Tell us here. We want to understand more about your interactions with genetic screening providers.

This post was originally published on Articles and Investigations – ProPublica.