Every other month, Jay Alexander Benitez would be hospitalized with pneumonia or other respiratory infections that stemmed from the profound brain damage he suffered at birth. “It was heartache,” the boy’s mother, Alexandra Benitez, said. “Being in the hospital scared him.”

Jay’s pulmonologist said that regular therapy with a nebulizer — a machine that delivers vaporized medication to the lungs to improve breathing — might prevent some of those illnesses. But Benitez said she was forced to wait months before the treatments could begin.

A Florida law passed in 1988 had prevented the Benitezes from filing a malpractice suit to recoup the costs of their son’s care but promised that a no-fault fund would pick up the tab.

Alexandra Benitez soon learned that the no-fault fund, the Birth-Related Neurological Injury Compensation Association, or NICA, would pay for nothing — not until she had first gone to Medicaid, an insurance program loathed by many of Florida’s poorest residents for its cut-rate reimbursements and propensity to fight claims large and small.

When Jay’s pulmonologist recommended the nebulizer machine to loosen mucus in his lungs, Medicaid said no. The family needed extra feeding tubes for Jay’s gastrostomy, a procedure in which a port is inserted directly into the stomach to provide nutrition. Medicaid said no. Jay’s doctor prescribed a “stander,” an adjustable frame that could be used to develop muscle strength in the boy’s legs. Medicaid said no.

NICA would not cover any medical care for her son until she could prove that Medicaid had already denied the claim and show a signed doctor’s letter verifying that the child really needed whatever she was requesting — not just breathing treatments, but also diapers, syringes, anything.

“They make the family jump through all these hoops. Just to get what children are entitled to,” said Benitez, who lives in Lakeland, just east of Tampa Bay. “Hardship, that’s what it is.”

This is the story of how Florida lawmakers stripped parents of the right to sue over births gone catastrophically wrong, created a no-fault program funded by fees paid by doctors and hospitals to cover those claims, made hundreds of millions investing those funds in the stock market, accumulated $1.5 billion in assets and then offloaded much of the costs of care onto taxpayers.

That left parents like the Benitezes to grapple with Medicaid’s arcane rules, a shortage of doctors willing to accept Medicaid patients and frequent denials of claims.

About 125 of the 215 brain-damaged clients, some of them now adults, currently in Florida’s NICA program qualify for Medicaid, and they are required to seek help first from the taxpayer-funded safety-net plan. Those with private health insurance coverage also must ask their insurer to pay for care.

After decades of enforcing this last-to-pay policy, NICA faces an existential reckoning.

Florida legislators approved a bill of sweeping reforms for the program after the Miami Herald and the nonprofit newsroom ProPublica began publishing an investigative series in April documenting parents’ frustrations with NICA. Gov. Ron DeSantis has yet to sign the bill.

And a federal lawsuit alleges that by telling parents to go to Medicaid first, NICA is causing them to commit fraud by filing a false claim with Medicaid when NICA was supposed to pay instead.

Both Medicaid and NICA consider themselves a “payer of last resort,” meaning they pick up only what insurance and other “third parties” do not. But in reality only one program can be last in line to pay, and that — as explicitly stated in federal law — is Medicaid, the whistleblower lawsuit says.

A federal district judge in Fort Lauderdale rejected an effort by NICA to throw out the suit, a decision the program is appealing.

When asked in a Sept. 25, 2008, deposition what would happen if Medicaid were to stop covering care for people in the program, NICA Executive Director Kenney Shipley replied: “It would make NICA insolvent.”

Neither NICA nor the Agency for Health Care Administration, which administers Medicaid in Florida, would provide figures for how much Medicaid has spent over the years on children enrolled in NICA. But an analysis AHCA performed for NICA in 2020 casts doubt on Shipley’s dire prediction.

Agency records for the period from January 2009 through Sept. 20, 2017, show AHCA paid at least $35.8 million to provide care through Medicaid for 122 people with NICA coverage. That equates to less than $5 million per year.

Still, federal law is clear that without a specific exemption, which NICA does not have, Medicaid must pay last, said Sara Rosenbaum, a health law professor at George Washington University and adviser to Congress on federal Medicaid payment and access policy.

“I’m not understanding why [Medicaid] has not come down on them like a load of bricks,” Rosenbaum said. “There’s something upside down about this whole arrangement.”

Helping Doctors, Billing Taxpayers

Florida lawmakers created NICA to reduce malpractice insurance premiums for doctors by shielding them from lawsuits for birth injuries that result in profound physical and cognitive disabilities, usually due to oxygen deprivation.

Obstetricians pay $5,000 a year for coverage under the program, an amount that hasn’t been raised in 33 years and would be nearly $12,000 in today’s dollars. All other licensed Florida doctors pay $250 a year. Hospitals chip in $50 per live birth.

In return for barring parents from suing, NICA compensates them with a one-time payment and a commitment to cover a lifetime of “medically necessary” care for the injured child.

But parents whose injured children are enrolled in NICA and qualify for Medicaid based on their income say Florida stripped them of the right to sue and replaced it with essentially the same medical treatment that every other poor and disabled child is entitled to in the state. In Florida, Medicaid rates below the median for quality of care when compared with other states.

“They said our son was going to be taken care of. All his medical care would be taken care of,” Benitez said of NICA. “Then, every little thing my son needed, we had to fight for it.”

The bill adopted by Florida legislators in April attempts to make life easier for families like the Benitezes. The legislation raises the one-time benefit to families from $100,000 to $250,000, boosts the payment when a child dies from $10,000 to $50,000 and requires for the first time that at least one member of the NICA board of directors be the parent of a child in the program.

A proposal to raise the $5,000 OB-GYN dues and the $250 annual fee for all others doctors by up to 3% a year, starting in 2022, was shelved.

Lawmakers left for a later date the issue of whether NICA can keep sending families to Medicaid first for their care.

During hearings, Florida lawmakers proposed adding a statutory requirement that NICA repay Medicaid for the care it has provided to children since the program began and going forward. NICA’s administrators beseeched them not to do it.

“I would just plead with you not to take action that could potentially cost hundreds of millions of dollars to the NICA program, potentially put it in financial jeopardy, and really derail where we’re trying to go with all of these positive benefits,” said Steve Ecenia, general counsel for NICA.

“This amendment causes us great concern and we would ask you not to adopt it,” said Ecenia, who is also a lobbyist for one of Florida’s largest for-profit hospital chains, HCA Healthcare.

The proposal was dropped.

NICA did not respond to a question about Ecenia’s characterization given that Florida data shows Medicaid has spent less than $5 million a year on these children over a recent nine-year stretch.

In the final bill, lawmakers directed Florida’s Medicaid agency to tally the “extent and value” of NICA’s potential liability for Medicaid spending and make recommendations about whether the state should recover those funds.

Whatever the Legislature does, NICA’s reliance on Medicaid may be doomed because of the lawsuit filed in Fort Lauderdale federal court.

NICA asked that the case be dismissed, raising a defense in court filings that the program is a state agency that cannot be sued.

In a 14-page order issued Sept. 18, U.S. District Judge William P. Dimitrouleas rejected the argument, finding that NICA is not a state agency and that federal and state laws make NICA legally responsible for paying health care claims before those costs can be passed on to taxpayers. NICA has asked the 11th U.S. Circuit Court of Appeals in Atlanta to reverse Dimitrouleas’ ruling.

In a 2019 email, Shipley, NICA’s executive director, acknowledged the risk that a judge might rule the program must pay first, with Medicaid serving only as a backup. She called this the “Sword of Damocles,” referring to the myth of the king who had to sit beneath a sword hanging by a thread.

The only other program like NICA, in Virginia, was forced to stop sending children to Medicaid for their care in 2018 and paid millions of dollars back to the federal government after being sued by the same whistleblower who filed suit in Florida.

"Always Denying Me"

As Alexandra Benitez drifted in and out of consciousness during her son’s chaotic delivery, she tried first to console her husband. Everything will be OK, she said, “because we are in the hospital after all.” Bleeding heavily from what she later learned was a tear between her uterus and her baby’s placenta, Benitez later bargained with her doctors.

“I told them to forget about me,” Benitez said. “Just take my son, and save him.”

Born with a severe brain injury, Jay Alexander Benitez was approved for NICA coverage in December 2001.

Alexandra Benitez, now 48, said she was told that NICA would cover a lifetime of care for Jay but not that she would have to get denials from Medicaid first.

“This was a constant thing, because my son always needed something,” Benitez said.

Medicaid, like NICA, did cover nursing care. Initially it agreed to pay for eight hours daily, allowing Benitez time to sleep, cook or clean the house. To remain eligible, Benitez had to reapply every six months and meet the low-income requirements.

If a family’s bank account crept over $2,000, Medicaid would terminate the nursing care for exceeding the program’s low-income requirements. Currently, a Florida household of three cannot earn more than $29,207 a year to qualify for Medicaid. Denials, delays, reductions in care and terminations can be appealed.

For years, the Benitez family lived on a razor’s edge of poverty, one roof leak or car repair away from ruin.

“They were always denying me,” Benitez said.

Benitez said she wishes NICA knew how Jay’s profound disabilities affected the entire family and how dedicated she and her husband were to his well-being.

“He was a happy soul,” Benitez said. “Even though his body was in constant pain he would fight through it.”

Jay died at home on Jan. 29, 2015, after suffering a massive seizure. He was 15. Benitez said she did whatever she could to make Jay’s life better. Having to slog through repeated requests, denials and appeals with Medicaid before NICA would pay depleted her.

“When you have a child you have hopes and dreams. You see them in the future. You don’t look forward to burying your own child,” she said. “It’s a hard, long road. A long fight. ... My son’s life, my family’s life, was not easy at all.”

Perpetuating Poverty

Although NICA and Medicaid cover a limited amount of in-home nursing care — and NICA even pays parents to watch their own children — some families are forced to patch together caregiving plans with nurses who don’t show up for work, sleep on the job, relocate unexpectedly or simply leave midshift, records show.

Pat Wear, who helped oversee a disability advocacy group in Florida before becoming commissioner for mental health and developmental disabilities in Kentucky, said low reimbursement rates are “at the heart of” Medicaid’s — and therefore NICA’s — inability to provide reliable, let alone high-quality, in-home nursing care.

“There’s a direct correlation between the reimbursement rates and quality of care,” said Wear, who is now retired. “Generally speaking, you get what you pay for.”

Even when NICA covers expenses that Medicaid won’t, it is NICA policy that the program will pay at the same reimbursement rate as Medicaid — which critics say ensures that the quality of care seldom exceeds what Medicaid can provide.

Florida’s Medicaid program spent less per enrollee to provide care for people with disabilities than almost any other state, ranking 44th out of 50 states in 2018, the most recent year reported in federal data.

In 2014, a Florida federal judge found that Medicaid’s low reimbursement rates relegated impoverished children to an inferior health care system.

Dr. Rex Northup, a retired critical care specialist who headed the Florida Panhandle region of another taxpayer-funded program, Children’s Medical Services, testified before the judge at the time. He described how some Pensacola families on Medicaid had to travel almost 350 miles to the University of Florida’s Shands Hospital in Gainesville to find a specialist willing to treat a medically complex child — not because the specialty was that rare, but because many doctors simply weren’t willing to accept Medicaid reimbursement rates.

Medicaid was “supposed to provide care equal to other insurance,” Northup said. Except in extremely rare cases, it didn’t, he added.

Then-U.S. Circuit Judge Adalberto Jordan found that Florida’s Medicaid reimbursement rates were so low that children in the state’s program did not have adequate or reasonable access to medical and dental care as required by federal law. The case settled, with health regulators vowing to improve reimbursement rates and access to care. (Jordan was elevated to the 11th U.S. Circuit Court of Appeals while the lawsuit was still pending.)

As part of the settlement, Florida’s Medicaid agency instituted an incentive plan that raised reimbursement rates for pediatricians who met certain requirements. Some are now paid the Medicare rate for elders, which is higher.

NICA administrators reject the claim that any children in the program who are insured by Medicaid are given inferior health care.

“NICA families receive care from some of the best, most specialized doctors in the United States — and no doctor has refused to care for a NICA patient, in Florida or elsewhere, due to reimbursement rates,” the program said in answer to a series of emailed questions from the Herald. “Not one.”

“If they, for some reason, do not accept a specific reimbursement rate for medically necessary and reasonable treatment, then NICA will pay whatever is necessary to make sure its families do not incur out-of-pocket expenses.”

NICA case management logs, obtained by the Herald under Florida’s public records law, are filled with references to parents calling the program, sometimes in tears over losing their jobs, and falling deeper into poverty, because of nursing-care issues:

• Mother “states that there is no way she can work because nursing care is not dependable and many times she has to go to work and then come home to care for [her child] as well or can’t go to work at all because nurses don’t show up.”
• “Nurses are calling off frequently and mother is having a hard time performing her job from home.”
• “Mother called, lots of problems with keeping a nurse, one left for a different job, one sleeps on duty and parent did not want her back.”
   

That mother called NICA to complain that her “husband had to come home from work to take care of [their] child. Work told him he was missing too much time re sick child, if he left don’t come back.”

Later — the exact dates are redacted — the log noted the father’s employer followed through with the threat. “Last week, father was let go because he had to go home to care for child.”

The log noted the father could be paid $15 an hour to give care to his disabled child when he’s forced to leave work. But if the father quit his job for good or was fired, his caregiving pay from NICA would drop to $10 an hour.

Showdown in Federal Court

NICA’s current legal reckoning is being driven by the parents of a severely disabled boy named Cody Arven. In July 2015, they challenged the policies of the Virginia Birth-Related Neurological Injury Compensation Program. It was the model for NICA.

There are some differences between the two programs. Florida’s soon-to-be-expanded board of directors consists of doctors, hospital representatives and insurers. Virginia’s board already includes two members who represent people with “special needs,” as well as a plaintiffs’ attorney. In Virginia, parents have up to 10 years after a baby’s birth to file a claim, compared with five years in Florida. And while Virginia does not offer a one-time $100,000 award, it pays lost wages annually to the injured child once he or she turns 18. The pay is equal to 50% of the average private, non-agricultural wage. The benefit amounted to about $29,000 in 2020.

In their federal lawsuit, Veronica and Theodore Arven, the latter now deceased, accused Virginia’s birth injury fund of illegally dumping its costs on taxpayers through Medicaid. Cody Arven was accepted into the Virginia fund after his 2003 birth left him severely disabled.

In 2018, the Virginia program settled by paying $20.7 million to the U.S. government and agreeing to stop shifting costs to Medicaid in the future. For filing the whistleblower lawsuit, the Arvens received $4.1 million of that.

That same month, Virginia’s program started buying private health insurance for all of its covered children who had relied primarily on Medicaid, said George Deebo, the director. Deebo said the change caused about a 20% increase in spending for the program.

“It changed the order of how we pay for services,” he said of the settlement. “Essentially, we reversed position with Medicaid.”

Florida NICA took notice.

“This is a terrible outcome,” one of the Florida program’s lawyers, Paul R. Monsees, wrote in a January 2019 email to Shipley and NICA’s general counsel. “What is to stop” a family from filing such a whistleblower suit in Florida? Monsees asked.

Three months later, on April 25, 2019, the Arvens did exactly that. Under a federal law, any person can bring a civil lawsuit against companies or people who allegedly defraud the U.S. government.

Whistleblower lawsuits are initially sealed so potential wrongdoers aren’t tipped off and complaints can be investigated. The Arven lawsuit was unsealed in September 2020 when Dimitrouleas rejected NICA’s attempts to dismiss it.

Although the issues are similar to Virginia, the stakes are higher. Florida’s NICA program has accepted more claims — 433 compared with about 255 for Virginia.

Virginia’s fund holds $500 million, about one-third of NICA’s assets.

"Stealing From Medicaid"

Florida and federal law require AHCA to claw back payment whenever Medicaid covers medical services that could have been paid for by a so-called third party, such as a health insurance plan or NICA.

The few exceptions to this rule are named in state and federal guidance and include state health agencies and federally designated benefits, such as the Indian Health Service, the Ryan White HIV/AIDS Program and the Women, Infants and Children program.

NICA is not on the list of exceptions — despite requests to state lawmakers and state and federal health regulators from NICA’s attorneys to be included.

When the Herald asked AHCA for records showing whether the agency has made any attempts to recover any money from NICA, the agency refused to answer, citing the pending federal lawsuit.

But while NICA’s attorneys failed to persuade AHCA to alter its policy on Medicaid liability, they have argued successfully thus far in state courts that NICA has no obligation to repay Medicaid.

Administrative law judges who preside over NICA petitions and claims at the Florida Division of Administrative Hearings have ruled repeatedly that the program is not liable for Medicaid spending.

That’s what happened in the case of Fatema Shakir, who entered the world when no one was looking. No doctor or nurse was in the delivery room, and her mom, Allyson Williams, was so numbed by pain blockers that she didn’t realize she had given birth in her hospital bed. Fatema, severely brain damaged, was found under the covers with no heartbeat.

Although revived that day in June 2007, Fatema would be left with profound brain damage rendering her unable to eat or breathe without tubes.

“What happened to Fatema shouldn’t have ever happened,” Williams said. “That shouldn't have ever happened.”

Fatema’s parents fought NICA compensation at first, arguing that there was no doctor present when she was born on June 3, 2007. Staying out of NICA might have enabled the parents to pursue a malpractice suit they filed in 2008.

But the NICA statute only requires a participating doctor — one who paid the $5,000 annual premium — to have provided obstetrical services any time during labor, delivery or resuscitation immediately after birth in order for the case to qualify for compensation.

In August 2013, Fatema’s parents abandoned their suit and accepted NICA benefits. As the case dragged on in administrative court, and Fatema’s needs grew more intense, Williams said she felt pressured to accept NICA and was relieved to get help no matter where it came from. Williams was a single mom, unable to keep a job, she said, with other young children at home.

“It wasn’t Fatema’s fault, but I couldn’t work because she had all these doctors’ appointments, and if she got sick she couldn’t go to [out-of-home daytime nursing care], and that just took a lot.”

But the month after Williams had accepted NICA, Florida’s Medicaid program slapped Fatema’s parents with a $1.4 million lien for Medicaid benefits that covered Fatema’s long stay in the neonatal intensive care unit after delivery and her subsequent care.

Nearly four years later, Fatema died at the age of 9 on April 15, 2017. Her father, Muhammad Shakir, died later that year.

Prior to Fatema’s death, Williams asked an administrative judge to order that NICA pay off the lien. The judge said no, stating that NICA was not responsible for past expenses paid by Medicaid. Williams appealed the denial to Florida’s First District Court of Appeal, which affirmed the administrative judge’s decision.

Ronald Gilbert, an Orlando attorney who represented Williams, said that after his client accepted the NICA benefits, AHCA never enforced the lien. Williams did not pay the lien, Gilbert said, and there is no record that NICA paid it.

“The lien went away, which is just stealing from Medicaid, in my opinion,” Gilbert said, “particularly if the NICA program has [$1.5] billion in financial reserves.”

Fatema continued to rely on Medicaid after being accepted into NICA. Williams said she does not recall who paid for Fatema’s care — NICA or Medicaid — but that the costs were covered. She said both NICA and Medicaid treated Fatema fairly, but that she would have preferred to sue for her daughter’s injuries.

“No amount of money in the world can replace the amount ... my daughter should have been awarded,” said Williams, who is now 42.

Federal regulators say they have not issued any legal opinions, letters or other written guidance with respect to NICA or the Virginia Birth-Related Neurological Injury Program.

Rosenbaum, the health law professor at George Washington University, said programs like NICA are in theory beneficial, but only if you “take the step of aligning it with Medicaid policy.”

If DeSantis signs the legislative reform bill adopted by lawmakers in April, then the state’s Medicaid agency will begin a review of NICA’s potential liability. The legislation requires AHCA to deliver a report of its findings by Nov. 1.

Jackie Thomas pulled up to her child care center, Damion’s Place, picked up the mail and stretched out beside a baby on a giraffe-printed playmat. She opened a letter from state regulators who had sent over a motion in their case to shut her down. In the chaos of the past year, they’d found Jackie’s center in Overland Park, Kansas, out of compliance in small ways, like having a trash can without a lid, and larger ones, like being understaffed. A hearing was scheduled for Feb. 17, three weeks away.

As Jackie held the letter, a teacher delivered more bad news: She was planning to leave for nursing school, adding herself to the long list of staff Jackie had lost. Jackie ran a separate day care in her home, just across the border in Lee’s Summit, Missouri, but she relied on employees to operate Damion’s Place. If she didn’t hire new teachers fast, she’d be down to only one who was approved by the state: her 71-year-old mom, Bonnie, who’d stepped in to help.

“Good Lord, can y’all just throw one punch at a time?” Jackie said.

“For real,” Bonnie laughed from the other room. “They’re hitting you in the face.”

“Forget it,” Jackie sighed. She wore a blue T-shirt with the words “Don’t Try Me,” matching her spiky blue bob.

She’d barely settled into her wooden rocking chair when her phone rang. It was a mother, saying she’d tested positive for COVID-19 and was withdrawing her kid from the center. Jackie was used to hearing from parents who’d gotten sick or lost jobs. At the start of the pandemic, Jackie had 112 kids; now, she was down to 26. Before she could process the call, her phone rang again. It was another mom who’d been diagnosed with the virus; three more kids gone. In an instant, Jackie calculated, she was out $3,200 that month.

Jackie had run her home child care for nearly a decade when she’d opened Damion’s Place in February 2020. The center, which was awaiting its license, was her chance to present a quality option to working-class parents, who could usually only afford to leave their kids with relatives or in caregivers’ homes. She was proud to provide its amenities, with activities and curricula and meals, at prices families could pay. One day, if she could get enough kids, she hoped that her center would offer what most others didn’t: round-the-clock care that matched the rhythm of the modern workforce.

At 53 years old, Jackie was so confident in her vision, in her ability to meet the high demand, that she imagined herself on the verge of a big break. It seemed the need was everywhere: Most Americans live in child care deserts, where licensed facilities, if they exist at all, have little or no capacity for new kids. Jackie pictured her centers stretching across Kansas City, then the region, and eventually the country, with 24-hour services for the parents who needed them most. It was the legacy she planned to pass on to her own children, leaving a profit for them to live on. “This mind was created to generate income,” she said. “They can’t stop this seven-figure mind.”

It would have been a difficult business proposition even during normal times, in an industry plagued by thin profit margins and high staff turnover. Many families couldn’t afford to pay much, and government subsidies didn’t begin to cover the costs. The pandemic pushed providers to the edge: about 13% of day cares across the country have shuttered in the past year. President Joe Biden was promising a one-time injection of $39 billion in relief funds for the industry, and he was preparing to pitch the most ambitious reform in decades, aimed at creating affordable, quality child care that capped costs for parents and raised wages for providers. But since the details were still emerging, Jackie wasn’t sure how much of the hopeful talk coming out of Washington would translate into real support for businesses like hers.

Around 5 p.m., once the center had emptied of children, Jackie locked the doors, settled into her Nissan Versa and began to drive home. She was exhausted; she’d been caring for an infant overnight. She turned up some urban gospel, but it couldn’t quiet her rushing mind. She’d depleted her savings. She’d wracked up $29,134 in credit card debt. The center was hemorrhaging money every day. Even if she could avoid bankruptcy, there was still the matter of the hearing. If the judge ruled against her, she’d fail the parents, many of them single mothers, who told her they would lose their jobs without the flexible care she offered.

Under a darkening sky, she merged onto Interstate 435. She usually managed to find confidence in the future even during the most trying of times, and that optimism had propelled her for as long as she could remember. The primary ingredients of success, in Jackie’s view, were sweat and an entrepreneurial spirit. Plus, according to numerology, her “angel number” was 819, a sign of prosperity. Ten minutes into her drive, by the fast-food lights on Metcalf Avenue, Jackie fell asleep in the driver’s seat.

She found herself jolted awake, cars whooshing by. She clutched her wheel and swerved toward an exit. When her heartbeat finally slowed and she’d rolled down the windows, she was grateful she didn’t have children in the car but certain that something had to change. “Jesus, come on, come on,” she said, rocking in her seat. “I need your help.” She was becoming more aware by the day that she couldn’t keep this going much longer. Just give up, she told herself. It’s not going to hurt you. But Jackie couldn’t bear to let go.

It was one of Jackie’s twin grandsons, Damion Thomas, who inspired her child care business. She’d raised eight children and two grandkids when Damion and his twin brother, Trayvion, were born, filling her home with a thrilling ruckus. Trayvion revealed himself to be a cuddler, always wanting to be held, and Damion was a quiet, crawling explorer. Each night, when Jackie came home from work, she swung open the door and called out for her “dump trucks.”

In September of 2008, after Jackie’s son and the twins’ mom split up, Jackie was awakened by a phone call: Damion, who was 2, was in critical condition. By the time Jackie arrived at the hospital, he had died. His forehead was bruised, his eyes were blackened and his neck was scored with scratches. His mom had gone to work that Saturday and left the kids with her new boyfriend, DeWhite Cameron. He was sentenced to life in prison for beating Damion to death.

Jackie didn’t like to talk about her grief or wear it on her face. She’d learned to cope with distress by throwing herself into work. When a fire had destroyed her house, when she’d left an unsafe relationship, Jackie had burrowed into her jobs, ascending from a Price Chopper cashier to a regional manager at Church’s Chicken. After the death of her grandson, she resolved to venture into an industry she knew nothing about, opening a home day care that would welcome kids whose parents worked all hours. In 2010, she started by watching her own grandchildren in her house, and by 2014, “Mrs. Jackie’s” was open to the public. The “Mrs.” was aspirational. She wasn’t married, but she believed in the aphorism “Fake it ’til you make it.”

Once again, her house filled with the cries and squeals of new life. She loved watching the infants take their first steps, say their first sentences, expand their vocabularies; she grew most attached to the kids who started with her young. She had a knack for teaching them to spell their names, to say “please” and “thank you.” She was particularly proud that she’d taught one boy, at 9 months old, to kiss a girl’s hand as a way to say, “I’m sorry.”

But it wasn’t long before Jackie grew frustrated with what she saw as a two-tiered system. Working-class parents, she realized, were sending their kids to home day care, with varying degrees of oversight. More well-off people had the option to send their children to licensed centers, with highly trained staff and regimented schedules. On balance, kids in informal home settings are less likely to get reading and counting instruction and more likely to watch hours of TV. Though the federal government doesn’t monitor safety in child care, the most comprehensive national study of the subject, from 2005, found that the death rate, though low, was more than 14 times higher in providers’ homes than in centers.

Child care in America has long been divided along class lines. The first “day nurseries” were developed by philanthropic women in the late 19th century to provide minimal protection for poor children, whose mothers had no choice but to work while wealthier moms stayed home. The service was designed merely to keep them alive, not to educate them. The first “nursery schools,” on the other hand, were created in the early 20th century for middle-class families who could afford to spend money on the social and developmental growth of their kids.

Federal policy entrenched the divide. The only universal child care legislation ever to pass Congress was vetoed in 1971 by President Richard Nixon, who denounced its “family-weakening implications.” Many conservatives had also opposed the program on the grounds that it would further racial integration. Republican congressman John Ashbrook said that one of the worst elements of the bill was that “the socioeconomic and race mix of students would reach its greatest potential under this legislation.” Instead, Nixon signed into law a child care credit, allowing parents who paid enough in taxes to claim a modest deduction. The policy primarily benefited middle- and upper-class families.

By 1990, low-income parents could receive slim child care subsidies, but President Bill Clinton dramatically changed the program in 1996. In response to fears of welfare dependency, Clinton signed legislation that made employment a condition of receiving the assistance. But the subsidies were too low. Soon after, struggling parents began taking on more second-shift, third-shift and weekend jobs just to get by.

Jackie found that many of her parents were spending a third of their income on care. Some weren’t getting subsidies; though federal guidelines allowed anyone earning up to 85% of their state’s median income to receive the aid, it gave states latitude to restrict access. The Missouri program usually accepted new parents who made under 45% of the median income, or $29,976 for a family of three. States calculate their subsidies based on market rates, but providers like Jackie tend to set prices based on what nearby parents can afford. For some of Jackie’s kids, the government pays as little as $7.70 a day.

Jackie knew the finances would be hard, but she found herself dreaming of opening a licensed center for kids like hers as a bid to equalize care. Typical centers are open weekdays, 7 a.m. to 6 p.m., but Jackie figured that if she ran hers at all hours, she could bring in enough kids to set bargain prices for her parents. They were delivery drivers and nurses, waiters and cashiers, and their employers often required them to take on early-morning or late-night shifts. She’d charge $200 a week for toddlers and $265 for infants, but she was willing to accept a sliding-scale fee based on income.

By 2019, more than a decade after Damion died, Jackie had saved $60,000. She found a little schoolhouse in Kansas that used to be a Montessori academy, and she poured half of her savings into fixing it up: mulch for the playground, gates for the infants, costumes for dramatic play. She installed cameras to film every inch of the center so parents could tune in to check on their children. She advertised as “Mrs. Jackie’s Christian Daycare,” but she called it Damion’s Place. The center opened a month before COVID-19 was detected in Kansas.

After Jackie fell asleep at the wheel this winter, she tried not to think about the upcoming hearing, which would determine if she could keep the center open. The only person she’d told was her mother, Bonnie, who occasionally relayed guidance she’d found on the internet. “Sometimes God will slow you down so that the evil ahead of you will pass before you get there,” Bonnie read aloud one afternoon at Damion’s Place. “Your delay could mean your protection.” Lying on her stomach, Jackie nodded as two young boys took turns sliding across her back.

Jackie had never been in trouble like this with regulators, and she believed the pandemic had caused this mess. Last spring, as the virus spread across the Midwest, more and more mothers lost work in the shutdowns. The government pumped money into the subsidy program, but still, Jackie couldn’t enroll enough kids at Damion’s Place to make ends meet; she compensated by packing her home child care all day and all night. Because of the unpredictable schedules of her parents, who were now deemed “essential workers,” Jackie needed to rotate kids between locations depending on where she had the capacity. She hired staff to shuttle them back and forth in her green Dodge Caravan and she slept two or three hours each night, when her daughter, Yolanda, who lived in her basement, relieved her.

Jackie was so stretched, in part, because she couldn’t find the right people to run Damion’s Place. She posted positions online, offered shifts to out-of-work moms and extended job offers to cashiers at her local Save-A-Lot. But those who had chronic conditions like diabetes and hypertension didn’t want to risk exposure; others had to stay home with their own kids who were attending school remotely. Jackie paid up to $12 an hour, but Walmart and Target offered similar wages, and they included benefits. Child care staffers — almost all women, and disproportionately women of color — were some of the lowest-paid workers in the country; more than a quarter quit their jobs each year.

With the feeding, diapering and teaching duties falling more squarely on Jackie, she couldn’t keep up with the many rules that centers must follow. Child-safety advocates, prompted by day care deaths, have spearheaded regulations at the federal and state levels over the past decade. But advocates for providers say that the only way operators can reasonably meet the evolving rules is if the government supplies them with the money and technical support to do so. Instead, states almost always ask child care operators to cover the costs — of buying softer furniture, or bringing on consultants, or taking new training. When providers fall out of compliance, the primary response is to punish them.

By June, Jackie’s business was starting to fall apart. On a humid Tuesday morning, a Missouri inspector named Romena Fox showed up at Jackie’s home day care, unannounced. Romena rapped on the front door, but no one answered. All she could hear were the high-pitched screams of children. After 15 minutes, she called the police, who pounded on the door for another 10 minutes. When they peered through a window, they noticed a young girl climbing in and out of a playpen and two others jumping on the floor. They couldn’t see an adult.

Once they called her phone, Jackie answered and let them in. She said she’d been doing paperwork while sitting in her bedroom entryway so that she could see kids napping in each of the three rooms. She had separated the children by sibling groups for social distancing, but she’d broken the rules by using a bedroom that hadn’t passed inspection. She apologized. Romena and another inspector noted that Jackie had too many infants in her home and that a playpen was broken. A young boy told them that Jackie had been sleeping.

Jackie knew she could do better, and she hated that her competence had been called into question. Embarrassed, she wrote Romena an email. “I thought I told you that sometimes when I am in the back I cannot hear the door,” she said. She explained that she had too many infants because a mom had shown up and asked Jackie to watch her kids while she ran errands. She hated turning down those requests; she’d already learned that one mom, who could no longer afford Jackie’s care, was leaving her young kids home unattended. As required by law, Jackie had reported her to authorities.

When Romena started calling parents, none complained about the quality of Jackie’s care. Mallory Talbott, who manages a barbecue restaurant, said parents knew to call the house phone if no one answered a knock. Emily Smiley, who works for Walmart, said, “You got to multitask with kids. When is she supposed to have time? She’s 24 hours a day.”

Neither mother’s schedule or slim budget left them with other options for nearby child care. Emily had found Jackie after the state of Missouri decided that her boyfriend wasn’t a safe guardian for her three kids. Jackie’s hours were what had allowed Emily to take a management promotion at Walmart’s bakery, a job that required night and weekend shifts. She was convinced that, without Jackie, she’d lose her job, which meant that next would come her car.

Brittney Fleming was equally reliant on Jackie; when she worked the night shift loading packages for FedEx, her two boys slept at Jackie’s home. She also took community college courses during the day, and sometimes her boys went to Damion’s Place. She wanted a degree, and ultimately a job with reasonable hours. With so few 24-hour child cares around, she saw Jackie’s support as key to getting there.

As a result of the bad inspection, Missouri proposed placing Jackie’s home day care license on probation. “A slap on the wrist,” Jackie called it.

Across the border that summer, Kansas inspectors kept showing up at Damion’s Place as well. They found a rusty nail in the wooden fence, which was also three inches shorter than the state-mandated minimum height. They discovered a new program director whose paperwork had yet to be filed with the state; Jackie had requested the form a couple of days earlier, but she hadn’t gotten around to mailing it. She wasn’t staying up to date on the documentation, and on two occasions, for brief periods of time, she wasn’t staffed at the right ratio. She needed one teacher for every three infants or every five toddlers. Jackie had been operating on a temporary permit, and in August, regulators submitted their formal intent to deny her license.

If the administrative law judge charged with Jackie’s case ruled against her, she would lose her kids at Damion’s Place and the revenues that came with them. She’d still have to pay rent. And she’d have to turn away parents like Brittney who depended on her.

Four days before her Kansas hearing, Jackie pulled up to a rundown child care facility in Independence, Missouri, which hadn’t been used in years. She’d worked out a deal with its owner: If she handled the repairs, he’d start charging rent after she opened for business. She’d found it last summer, as a backup center in case Damion’s Place was shut down. Now, she was hoping that her contractors could get it done before the end of the week.

Jackie climbed the stairs to the boxy building, gripping the candy-striped railing. She grimaced at the pastel-colored bricks on the exterior. She wanted to paint the walls her favorite color, green, which meant “money” and “go.” She pushed open the heavy door and stepped into the foyer, where trash was heaped around her. “A lot of stuff,” she said. “We got a lot of work to do.”

Jackie had estimated the construction would cost about $6,000, but by now, it had snowballed into more than $30,000, the rest of her savings. She’d paid contractors to pour cement for the parking lot, lower the sinks to child height, lay a deck and patch the leaking roof. It was hard to keep track of everything left to do, and there wasn’t a simple list to follow. In the city of Independence, she needed approval from the building inspector, the health department, the fire department, the power and light department, the water department, the zoning department. It was one reason that child care experts didn’t expect new centers would pop back up once the economy recovered: They’re expensive to build and the bureaucracy overseeing them is a maze.

It was 7 degrees outside, and Jackie’s breath hung in the air as she fiddled with the thermostat, which didn’t seem to be working.

“Good morning,” said a man named Darrion Clark, whom Jackie had hired to fix up the place.

“You know something about furnaces?” Jackie asked, burying her hands in her pockets.

She walked around the center with purpose, in tall leather boots over red sweats. She glanced at the cracked paint on the hallway ceiling, mindful of inspections to come. “What do we do about this here?”

“You can just spray that shit with the texture,” said Darrion, miming it as he spoke. “Then you ain’t gotta worry about making sure it’s straight.”

Jackie rubbed the back of her head. She wondered whether the doors were wide enough.

“Thirty-five and three-quarters,” Darrion said, as he measured the entryway to the toddler room.

“I need 36 true and true,” Jackie replied. “When they come in here, you know they’ll be nitpicking.”

The afternoon sun cast long shadows down the main room.“The kids are gonna have a flippin’ good time,” Jackie said. “It’s gonna be real nice. Once I get it done.”

The problem, it appeared, was that the building was nowhere near done. She still needed a grease trap, emergency lights, a mop sink, a bottle sink and a prep sink for food, even though the city of Independence had told her that she wasn’t allowed to make food for her kids without a commercial kitchen. Jackie now wanted to get Yolanda to run a new business she’d start, Mrs. Jackie’s Catering Company, with a commercial kitchen and freezer trucks.

Yolanda, who was helping her mom ferry appliances, walked in, shivering. “It’s crazy out there,” she said, laughing about the cold.

Yolanda was worried about the project. She’d tried to warn her mother about taking on too much. One thing at a time, Yolanda repeated. At 35, she didn’t think she could move out of her mother’s basement; her mother didn’t know her limits, and Yolanda felt compelled to take on some of her mom’s load, “so her limit is part of my limit, too.” Even her 20-year-old son, Willie, had moved in to help them watch kids, and he was sleeping on an air mattress in the basement. Yolanda barely had any time. She worked 35 hours a week at Amazon, took high school courses online, and was learning to start a podcast, Spit Shit, so that one day, she, too, could be her own boss. Whatever hours were left she gave to her mom.

After Yolanda drove home, Jackie stood in silence in the shell of the defunct center she was hoping to resurrect. It began to dawn on her that she wouldn’t be able to open by her hearing date. Her backup plan wouldn’t be a backup at all.

“I think I’ll be all right,” she said.

Two days before her hearing, in her shaded home office, Jackie sat at her desk, which was strewn with fuzzy pens, an oversized calculator and several cell phones. They kept buzzing with notifications. A few moms texted saying they wanted to enroll their kids, and the fresh interest buoyed her spirits. She didn’t let on that Damion’s Place was on the line. She wanted to believe that she could make it work, that even if the center were shuttered, she’d find a way. Annette Ligon, whose daughter, S’Aniyah, was on Jackie’s weekend shift, called to explain that she now needed weekday care.

“Bring her back to me,” Jackie interrupted. “Boom, kick, bah.”

Annette had found Jackie in the middle of the night a couple of years earlier. She was a single mom with a Ph.D. in psychology, teaching at a university, and she had nearly lost her second job on the late shift at a Harley Davidson factory after her child care fell through. Now, she was counseling front-line medical professionals during the crisis. She sometimes pulled 90-hour weeks, and when she traveled to hot spots, she left S’Aniyah at Jackie’s for days on end.

“I’ll bring her to you tomorrow,” Annette said. “I don’t know what the rest of the week is going to look like.”

Jackie hung up and walked over to Mallory Talbott’s daughter, McKenna, who was standing in a playpen in her dim living room. McKenna had unzipped her footie pajamas and taken them off. “What are you doing?” Jackie asked her. “Haven’t we had this discussion? You can’t be showing your goods. You cannot. You are a lady.” McKenna stared at her blankly. Jackie gently pulled her pajamas back on as a Humpty Dumpty cartoon played on one of three TVs.

On the day before her hearing, Jackie didn’t bother to dress. In her floral nightgown, she typed out a new sleep observation form for Damion’s Place, an employee log, an updated menu. She designed and ordered new scrubs, emblazoned with her logo, for her staffers. She admired the uniforms like they were the future.

Jackie had been reading about Biden’s intentions to save the industry. They would take clearer shape in the spring with his American Families Plan, the most comprehensive proposal in the 50 years since Nixon’s veto. It would limit child care costs for working- and middle-class families to 7% of their income, ensure that subsidies covered the true cost of quality care and help fund higher wages for child care workers. The $1.8 trillion package, including landmark spending on universal pre-K and community college, would likely face challenges in Congress, and on the issue of child care, it hadn’t nailed down states’ roles in determining how the money would be spent. Another temporary aid bill would offer rescue funds to providers like Jackie and, for one year, increase tax credits for eligible parents, but it wasn’t enough to overhaul the system.

Once night fell, Jackie left her computer and sprawled across her living room’s leather sofa. She video-chatted with her youngest son, Isaiah, and marveled at the big house he shared with his brother.

“And I’m gonna go to the firefighter academy, so the next house is gonna be even better!” Isaiah said.

“You’ll buy me a big, beautiful house,” she teased. “What am I gonna do with the $600,000 house you buy me?”

She called her son Sedrick next and asked to hear his latest track. He was trying to make it in music, and Jackie had no qualms giving unsolicited advice.

“You need a different beat,” she said.

“Don’t want one,” Sedrick shot back.

“Not what you want, it’s what’s gonna sell,” Jackie said.

A little before 11 p.m., the doorbell rang. Jackie pushed herself off the couch and walked over to the entrance, where a UPS driver named Tannette Avery said, “Here’s the man.”

Jackie pulled 6-month-old Tommy in from the winter chill. She took off his jacket and set him in a playpen by her couch. Sucking his pacifier, he rolled over onto his stomach. Jackie flicked off the light, sat down and pulled a fleece over her legs. She had 10 hours until her hearing. But just as she rested her head back, Tommy started to whimper.

“Tommy Tom,” Jackie said into the dark night, “please don’t start.”

The following morning, Jackie let two kids into her house, passed them off to Willie, and then sat at her desk for her hearing on Zoom, wearing the same floral nightgown. Without money for a lawyer, she was representing herself, and she hadn’t prepared witnesses or questions. For two hours, the state’s lawyer walked through each inspection of Damion’s Place in precise detail. Regulators described a pattern of noncompliance, and as Jackie listened, she sucked back tears. She held her brief remarks until the end.

“I just want to say that I try my best,” Jackie said. “I have had a struggle with getting people employed because of the pandemic.” She explained that she was in the process of hiring a whole new staff, and she believed that they would be good. “Gotta admit, this is my first center, a lot of things I didn’t know. But rest assured, I am not trying to be out of compliance, and right now, feel I am in compliance. I enforce the rules better, made forms to enforce the rules better. There’s not much more for me to do.”

The judge concluded by saying that he wouldn’t make a decision straight away, but he promised to deliver one soon. Jackie signed off and lay her head in her hands. From the tenor of the call, she figured that the state would shut down her center. She’d just renewed her lease at Damion’s Place, and now she couldn’t get out of it. “Oh Jesus, I’m tired,” she said. “Two years of paying for a building I cannot use. Two years.” In the privacy of her office, behind a closed door, she allowed herself to sob, letting out a deep moan.

Her doorbell rang. A mother who worked at a grocery store had come to pick up her son. “Everybody have a good day?” she asked, as she wiped her feet at the door.

Jackie wasn’t prepared to say aloud what she was just beginning to understand.

“Mhhmmm,” she replied.

It would be another seven weeks before the judge would issue his decision. On April 7, he would deny Jackie’s Kansas license for Damion’s Place. Her backup center would not be ready. Jackie’s capacity would be limited to 18 children at her home child care in Missouri — six kids on each of her three shifts. She wouldn’t have room for Brittney, the community college student and nighttime FedEx worker, to bring her kids. Brittney would end up leaving her job to watch her children, after what she’d come to see as an “extended stay” in employment. Jackie would be too nervous to ask other parents how they’d fared in her shutdown. She would wonder if it was even possible to build an enterprise for these families.

For now, though, as the evening light waned in her office on the day of the hearing, Jackie got to work planning her next move. Her mind traveled to the future, its most comfortable place. Even though COVID-19 was surging, she believed that enrollment would soon improve. That the 3 million women who had lost jobs in the pandemic would return to work. That if she found just one more location, a backup for her backup center, she could keep all of her kids. Then, even more parents would come running.

She opened Zillow and traced her mouse down the border between Missouri and Kansas. She zoomed in on 46th street, on a stretch of rentals on the Missouri side. “These would be perfect,” she said. $2,700 a month. $1,750 a month. $2,200 a month. “Too much money. That won’t be happening.” She hit on a new listing, for $1,050 a month. A gray one-story on Liberty Street. “Hardwood floors. One bath.” She clicked her tongue. “This one’s doable.”

She started answering Zillow’s questions to request a tour for the following morning. Desired lease? 12 months. Household size? She laughed. Credit score? “Really?” Her credit was down from 750 to 631. “This is gonna be harder than I thought.”

She called a friend who worked in real estate. When he picked up, she put on a bright, commanding voice.

“Heyyy, Will Amazing,” she started. “I need you to find me a house.”