by Peter Elkind

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For Lincare, paying multimillion-dollar legal settlements is an integral part of doing business.

The company, the largest distributor of home oxygen equipment in the United States, admitted billing Medicare for ventilators it knew customers weren’t using (2024) and overcharging Medicare and thousands of elderly patients (2023). It settled allegations of violating a law against kickbacks (2018) and charging Medicare for patients who had died (2017). The company resolved lawsuits alleging a “nationwide scheme to pay physicians kickbacks to refer their patients to Lincare” (2006) and that it falsified claims that its customers needed oxygen (2001). (Lincare admitted wrongdoing in only the two most recent settlements.)

Such a litany of Medicare-related misconduct might be expected to provoke drastic action from the Department of Health and Human Services, which oversees the federal health insurance program that covers 1 in 6 Americans. Given that most of Lincare’s estimated $2.4 billion in annual revenues are paid by Medicare, HHS wields tremendous power over the company.

Sure enough, as part of the 2023 settlement, HHS placed Lincare on the agency’s equivalent of probation, a so-called corporate integrity agreement. The foreboding-sounding document includes a “death penalty” provision: Any “material breach” of the probation agreement, which runs for five years, “constitutes an independent basis for Lincare’s exclusion from participation in the Federal health care programs.” Such a ban could effectively kill Lincare’s business.

That sounds dire. Except that before that corporate integrity agreement was signed in 2023, Lincare was under the same form of probation, with the same death penalty provision, from 2018 to 2023, and violated its terms. From 2006 to 2011, Lincare was similarly on probation and also violated the terms, according to the government. And before that — well, you get the picture. Lincare has been on probation four times since 2001. And despite a pattern not only of fraud, but of breaking its probation agreements, Lincare has never been required to do more than pay settlements that amount to pennies relative to its profits.

This is not an aberration. While HHS routinely imposes the death penalty on small operations, it has never barred a national Medicare supplier like Lincare from continuing to do business with the government. Some companies, it seems, are too big to ban.

Lincare’s lengthy record of misbehavior isn’t a surprise to people in the medical equipment business. What is surprising is the federal government’s willingness to pull its punches with a company that has fleeced taxpayers and elderly customers again and again.

Federal officials have never pursued the company executives who oversee this behavior even though two of them, Chief Operating Officer Greg McCarthy and Chief Compliance Officer Jenna Pedersen, have worked at Lincare through all four of the company’s probationary periods. No one has faced criminal charges for activity the government’s own investigators deemed fraud.

Medicare has continued to pay Lincare billions even as many of the company’s customers revile it. Evaluations on customer-review websites are lacerating, and complaints to state attorneys general abound. On the Better Business Bureau’s website, 888 reviewers gave Lincare an average score of 1.3 out of 5. They cite dirty and broken equipment, charges that continue even after equipment has been returned, harassing sales and collection calls, and nightmarish customer service. As one person wrote in April, Lincare is “running a scam where they have guaranteed income” and “the customer can’t do a thing.”

Bauer’s oxygen concentrator and Lincare’s Libby, Montana, storefront. The company has 1.8 million customers in 48 states. (Rebecca Stumpf, special to ProPublica)

HHS has always been reluctant to cut off big suppliers. Medicare’s first objective is to make sure nothing interrupts the flow of medications, devices and services to beneficiaries. And were HHS to seek to ban Lincare, the company would surely launch a long, costly legal war. But even if the cost of such combat reached many millions of dollars, it would still be a tiny fraction of the amount lost to fraud, which is yet another contributor to the soaring medical costs that bedevil the country. “This is taxpayer money,” said Jerry Martin, a former U.S. attorney who represented an ex-Lincare executive in a whistleblower suit against the company. “We need to pay people that don’t have four corporate-integrity agreements.”

Weak enforcement is not the only problem. Lincare is paid to rent oxygen equipment to patients, with HHS covering most of the monthly bills. But those rental fees often add up to many times what it would cost simply to buy the equipment. “If this were a rational country,” Bruce Vladeck, who ran Medicare from 1993 to 1997, told ProPublica, “the government would buy a million [oxygen] concentrators and pay Amazon or somebody to deliver them.”

In a seven-month investigation, ProPublica examined how Medicare’s largest provider of home medical equipment has managed to take advantage of its customers for a quarter of a century while fending off meaningful enforcement. ProPublica interviewed more than 60 current and former employees and executives, Medicare and Justice Department officials, patient advocates, and health care experts. ProPublica also reviewed dozens of court cases involving Lincare and thousands of pages of internal company documents, sales presentations and emails.

The investigation reveals a dismal picture of a company with a sales culture that depends on squeezing infirm and elderly patients and the government for every penny. Lincare employees are pressured to sell — whether a customer needs a product or not — on pain of losing their jobs.

And the company’s record of misbehavior and conflict extends far beyond its sales and billing practices. Lincare has paid $9.5 million in settlements for data breaches and mishandling patient and employee records. It has faced claims of violating wage rules, harassing customers with sales and collection calls, and tolerating racist comments to an African American employee. (Lincare lost the latter suit at trial and is appealing.) The company has repeatedly sparred in court with former executives, including a 2017 suit in which longtime executive Sharon Ford claimed that the company had cheated her out of a $1 million bonus. (A judge ruled in favor of Ford at trial before the case was overturned on appeal.) Ford testified that Lincare had earned an industry reputation as “The Evil Empire.” And when Lincare’s CEO, Crispin Teufel, resigned last year to become CEO of a rival company, Lincare sued him for breach of contract and misappropriating trade secrets. Teufel ultimately admitted to downloading confidential company records and was blocked from taking the new job. (Teufel did not respond to requests for comment. His replacement, Jeff Barnhard, took over as Lincare’s CEO in July 2023.)

Lincare declined multiple requests to make executives available for interviews. After ProPublica provided a lengthy document listing every assertion in this article, along with separate such letters to executives McCarthy and Pedersen, the company responded with a three-paragraph statement. It asserted that Lincare is “committed to delivering high-quality and clinically appropriate equipment, supplies, and services” but acknowledged “missteps in the past.” The company said its “new leadership” had “commenced a comprehensive review of our policies and procedures to help ensure we are complying fully with all state and federal regulations” and that “investments and enhancements we have made over the last several months will help prevent these issues from repeating in the future.” Lincare did not respond to follow-up questions requesting examples of the steps the company says it’s taking, including whether it has terminated any executives as part of this push.

When ProPublica asked a top Medicare enforcer why Lincare had eluded banishment, her answer suggested she views probation as a continuing ed class rather than a harsh punishment. “It’s like taking a college course,” said Tamara Forys, who is in charge of administrative and civil remedies for HHS’ Office of Inspector General. “At the end of the day, it’s really up to you to change your corporate culture and to study, to learn to pass the class … to embrace that and take those lessons learned and move them forward.” A spokesperson for the Centers for Medicare and Medicaid Services, which runs Medicare, declined to comment on Lincare but said the agency “is committed to preventing fraud and protecting people with Medicare from falling victim to fraud.”

There’s little incentive to refrain from misbehaving in an environment that tolerates bad behavior, said Lewis Morris, who was chief counsel to HHS’ Office of Inspector General from 2002 to 2012. “As long as that [settlement] check is less than the amount you stole, it’s a good business proposition.”

Indeed, Lincare has counted on the government’s tepid response, two former company executives told ProPublica. Top management, they said, responds to fraud warnings by conducting a cost-benefit analysis. “I’ve sat in meetings where they said, ‘We might have $5 to $10 million risk — if caught,’” said Owen Kirk Staggs, who ran one of Lincare’s businesses in 2017 and fell out with the company. “‘But we’ve made $50 million. So let’s go for it. The risk is worth the reward.’”

Longtime friends Ben Montgomery and Brandon Haugen worked together in Lincare’s operation in Libby and noticed billing irregularities. (Rebecca Stumpf, special to ProPublica)

Libby, Montana, provides a glimpse of the way Lincare operates. Oxygen is an urgent need in this mountain town of 2,857. Libby suffers from the lingering effects of “the worst case of industrial poisoning of a whole community in American history,” in the words of the Environmental Protection Agency. An open-pit vermiculite mine, which operated from 1963 to 1990, coated the area — and residents’ lungs — with needle-like asbestos fibers. More than 2,000 Libby citizens have been diagnosed with respiratory diseases since then; some 700 have died.

Hundreds of ailing residents relied on Lincare for home concentrators, which provide nearly pure oxygen extracted from room air. Medicare and Medicare Advantage plans (which the government also funds) covered 80% of the monthly rental of about $135; patients paid the remaining 20%.

In 2020, Brandon Haugen noticed something suspicious in Lincare’s bills. Haugen was a customer service representative at the company’s local distribution site, one of 700 such locations around the country. (Lincare serves 1.8 million respiratory patients in 48 states.)

Lincare was allowed to charge patients and their insurers for a maximum of 36 months under federal rules. After that point, patients could use the equipment without further charge. Lincare, however, kept billing local patients and their Medicare Advantage plans far beyond 36 months — in some cases, for years. To Haugen, this looked like fraud.

Haugen conferred with center manager Ben Montgomery. The two, who had grown up in the area, had been buddies since seventh grade, after getting to know each other at summer Bible camp. Then 38, earnest and just beginning to gray out of their boyishness, the two men were concerned. The patients the men dealt with were their neighbors.

A regional Lincare manager assured them that charging beyond 36 months for Medicare Advantage patients “is the correct way to bill.” Skeptical, Montgomery raised the issue with Lincare’s headquarters in Clearwater, Florida. Lincare’s compliance director told him, according to Montgomery, that “it’s the patients’ problem to fix it if they want it to stop”; that was “just how it worked.” Further questions, sent to Lincare’s chief compliance officer, Pedersen, went nowhere. “It seemed pretty obvious they were well aware of this,” Montgomery told ProPublica. “For me, these were my customers that you were screwing over.”

Among them was Neil Bauer, now 80, who lives in a ramshackle house “out in the boondocks,” as he put it, 38 miles southeast of Libby. Bauer spent his career as a barber, head of investigations for the county sheriff’s department and a member of the local school board. He’s been on oxygen for more than a decade and quickly gets short of breath. “I can’t do stuff so much now,” he said. His wife is on oxygen, too. “We just have a sick family,” Bauer said.

How Lincare Billed Over $16,000 for a Breathing Device that Costs $799

Neil Bauer needed an oxygen concentrator to cope with asbestosis. Rather than buying one — which costs about $799 today — Medicare Advantage rented one from Lincare and paid 80% of the monthly charges. Bauer covered the remaining 20%. Companies can bill for a maximum of 36 months, after which patients are entitled to use the equipment without further charge.

*This calculation undercounts the amounts Lincare billed; $27.35 for Bauer (and $109.40 for Medicare) represent the amounts Lincare was charging at the end of the time Bauer was billed. The monthly charges were higher earlier in the period, but ProPublica could not gain access to all of Bauer’s account statements, so we used the lower, more conservative figures.

Lincare had kept billing Bauer for his concentrator for seven years after it was supposed to stop. The monthly copays weren’t huge, but they added up to $2,325 that he shouldn’t have been charged over that period, a daunting sum for Bauer, who lives on a fixed income — and a hefty mark-up over the cost of the equipment, which can be purchased online for $799. For its part, Medicare Advantage paid Lincare $9,299 for Bauer’s concentrator during this period, along with another $5,760 for the months Lincare was legally permitted to bill. All told, the rental payments to Lincare, during authorized and unauthorized periods, were $16,547 for that one $799 piece of equipment. “We paid forever,” said Bauer. “Never was I told that we could have one without having to pay anything.”

Haugen and Montgomery studied billing records. Among the customers in their tiny office, Lincare was improperly charging at least 33 people and their Medicare plans. The two began to wonder how far this problem extended. An employee in Idaho confirmed the same practice was occurring there. “In my mind,” Montgomery said, “I went, ‘This is Libby, Montana. Multiply that by every center in the country. This is obviously a lot bigger deal.’”

Montgomery and Haugen had seen enough. On Jan. 18, 2021, they emailed a joint resignation letter to Lincare’s top management, recounting their concerns about billing that “likely affects thousands of patients company wide.” Citing the lack of response from corporate officials, they wrote, “we can only conclude that this is a known issue that is being covered up by Lincare.”

Haugen had 10 children. Montgomery had four. Neither man had another job lined up. “Had this not happened,” said Montgomery, who had been at the company for 13 years, “I would have seen myself retiring from Lincare.”

Instead, they became whistleblowers. They retained a law firm and sued Lincare in Spokane, Washington, the site of Lincare’s regional headquarters. After federal prosecutors decided to back the case, Lincare settled in August 2023. The company admitted to overbilling Medicare plans and patients across the country for years and paid $29 million to settle the matter, with $5.7 million of that going to Montgomery, Haugen and their lawyers. Dan Fruchter, the assistant U.S. attorney leading the government’s case, told ProPublica that the overbillings likely involved “tens of thousands” of patients.

Lincare agreed to its fourth stint of probation with HHS; the new corporate-integrity agreement took effect on the day after the previous one expired. The conduct Montgomery and Haugen flagged had gone on for years while the company was already on probation. But Lincare got the government lawyers to agree that nobody would try to impose the Medicare death penalty. Lincare asserted in the settlement that it had installed software (which it did only after learning of the government investigation) that will prevent billing beyond 36 months. Lincare promised to ensure “full and timely” compliance with the agreement and prevent future wrongdoing.

“We paid forever,” said Bauer, seen at his house outside Libby. He didn’t realize at the time that Lincare had been wrongly billing him for years. (Rebecca Stumpf, special to ProPublica)

Medicare fraud, including in the “durable medical equipment” category that Lincare operates in, has long been an intractable problem. It cost the U.S. Treasury an estimated $60 billion in 2023 alone.

The government deploys large sums to try to stop it. HHS’ inspector general’s office has a $432 million budget and a staff of 1,600. Those resources are effectively extended by whistleblowers — most of the cases against Lincare have been such suits — who can receive a percentage of a civil settlement if they reveal wrongdoing, and by federal prosecutors, who can also bring cases or join those filed by whistleblowers. Last year HHS recovered $3.2 billion from fraudulent schemes.

But the agency’s enforcers have wielded their biggest deterrent almost entirely against small perpetrators. In 2023, they banned 2,112 small firms and individuals from Medicare reimbursement.

HHS hasn’t done the same with companies that operate on a national scale. Forys, the agency enforcer, said she worries that expelling a big provider from Medicare could leave customers in the lurch. In April, Inspector General Christi Grimm defended her office’s work in congressional testimony but also asserted that its resources are inadequate. A lack of staff keeps it from even investigating “between 300 and 400 viable criminal and civil health care cases” annually, she testified, as well as more than half the fraud referrals from Medicare’s outside audit contractors.

A different reason for going easy on big companies was suggested by Vladeck, the former Medicare chief. Seeking to bar a large supplier for repeatedly violating probation would require exhaustive documentation and years of litigation against squadrons of well-paid corporate lawyers. As a result, Vladeck said, “there’s a real incentive, from a bureaucratic point of view, to just slap their wrist, give them a kick and make them apologize. … It’s a cost of doing business.”

There are steps enforcers could take, but almost never do, that would make companies take notice, according to Jacob Elberg, a former federal prosecutor who is now a professor at Seton Hall Law School. (Among his publications is a 2021 law review article titled “Health Care Fraud Means Never Having to Say You’re Sorry.”) Elberg’s research shows that HHS and prosecutors tend to negotiate far smaller civil settlements than the law allows, and they rarely prosecute company executives. They also almost never take cases to trial. In short, enforcers have long signaled to companies that they’re looking for a smooth path to a cash payment rather than a stern punishment for a company and its leaders. “It is generally a safe assumption,” Elberg said, “that the result will be a civil settlement at an amount that is tolerable.”

For its part, Congress may soon be weighing a new law that would reshape how the oxygen industry is paid by Medicare. But rather than clamp down on corporations, the legislation seems poised to do the opposite. A new bill called the SOAR (Supplemental Oxygen Access Reform) Act would hand companies like Lincare hundreds of millions more, by raising reimbursement rates and eliminating competitive bidding among equipment providers. Advocates say the legislation will help patients by making some forms of oxygen more available and improving service. But along the way it will reward Lincare and its rivals.

Congress has a history of treating oxygen companies generously. For years, lawmakers set Medicare reimbursements for oxygen equipment at levels that even HHS, in 1997, characterized as “grossly excessive.” Over the succeeding decade and a half, Lincare took advantage, snatching up hundreds of small suppliers and becoming the industry’s largest player.

In 2006, under pressure to reduce costs, Congress approved steps to curb oxygen payments, including the introduction of competitive bidding and the 36-month cap on payments for equipment rentals. But even those strictures were watered down after the industry poured money into political contributions and lobbyists, who warned that cuts would harm elderly patients.

Lincare compensated by amping up strategies that generated profits, with little apparent regard for Medicare’s rules, which say it will reimburse costs for equipment only when there is evidence of “medical necessity.” The company aggressively courted doctors and incentivized sales, through bonuses the company paid for each new device “setup.” According to a 2016 commission schedule, reps could earn $40 for winning an order for a new sleep apnea machine, $100 for a new oxygen patient and $200 for a noninvasive ventilator. The entire staff of each Lincare center could receive a small bonus for signing up a high percentage of new patients for automatic monthly billing. Patients who refused auto-billing, a company document advised, should be warned they might face “collection activity” and service cutoffs. “Sales is our top priority!” declared a 2020 PowerPoint to train new hires.

Once it had a customer, Lincare would pitch them more costly products and services. One way Lincare did this was through a program called CareChecks. Promoted as a “patient monitoring” benefit, CareChecks were aimed, according to a company presentation, at generating “internal growth.” If a patient exhibited a persistent phlegmy cough, Lincare could persuade their doctor to prescribe a special vibrating vest to loosen chest mucus. Nebulizer patients might be candidates for home oxygen. Patients using apnea devices were potential candidates for ventilators. “We’d make patients think we were coming in clinically to assess them,” a former Lincare manager said, “when really it was to make money off of them.”

Selling replacement parts could also be lucrative. At Lincare call centers that sold items like hoses, masks and filters for CPAP machines (used to treat apnea), hundreds of commissioned agents in Nashville, Tennessee, and Tampa, Florida, were equipped with programs displaying what items each patient was eligible for under Medicare. By law, patients had to request replacement parts. But frequently, that wasn’t what happened, according to Staggs, who oversaw the CPAP business in 2017. He discovered that top salespeople, whose bonuses could total $8,000 a month, averaged just a few minutes on the phone per order. That wasn’t nearly enough time to identify what items, if any, customers actually needed. Staggs listened to recorded calls and found that, after reaching customers, agents often placed them on hold until they hung up, then ordered them every product that Medicare would cover.

At Lincare, results were closely tracked and widely shared in weekly emails displaying the best and worst performers in each region. Notes taken by one manager show supervisors’ performance demands during weekly conference calls: “Unacceptable to miss goal … stop the excuses … If this is not being done, wrong [center manager] in place … If you’re not getting O2 and not getting Care Checks — you shit the bed. Stop accepting mediocre, lazy responses ….”

“If we didn’t meet our quota, they were going to chop our heads,” said former Illinois sales rep Sandra Gauch, who worked for Lincare for 17 years before joining a whistleblower suit and quitting in 2022.

One salesperson was so fearful of missing her quota, according to Gauch, that she signed her mother up for a ventilator that she didn’t need. A company audit in 2018 found that only 10 of 56 ventilator patients at one center were using them consistently. Some patients hadn’t used their devices for years. Yet Lincare kept billing Medicare.

Lincare has 700 locations around the country, including this one in Libby, where widespread asbestos contamination left thousands with serious breathing problems. (Rebecca Stumpf, special to ProPublica)

Only one thing mattered as much as maximizing new equipment rentals, according to former employees and company documents: minimizing customers’ attempts to end rentals. A call to retrieve breathing equipment meant that it was no longer wanted or being used, and Lincare was supposed to retrieve it and promptly stop billing Medicare and the patient. The person’s health might have improved. They might have gone into the hospital — or died. The reason didn’t matter; at Lincare, “pickups” were a black mark, deducted from employees’ performance scores, jeopardizing their bonuses and jobs.

As a result, employees said, such requests were dreaded, delayed and deterred. Clinical staff were sent to “reeducate” customers to keep using their devices. Patients were told they’d need to sign a form stating they were acting “against medical advice.”

Lincare managers made it clear that pickups should be discouraged. In a 2010 email, an Ohio center manager instructed subordinates: “As we have already discussed, absolutely no pick-ups/inactivation’s are to be do[ne] until I give you the green light. Even if they are deceased.” In 2018, an Illinois supervisor emailed her deputies that pickups were barred without her explicit approval: “Not even Death that I don’t approve first.”

In February 2022, Justin Linafelter, an area manager in Denver, responded to the latest corporate email celebrating monthly “Achievement Rankings” for oxygen sales by pointing out that almost all of the centers atop the rankings had at least 150 “pending pickups,” customers who weren’t using their equipment but whom the company appeared to still be billing. “Some of these centers are just ignoring pickups to make this list.”

That was only one of Linafelter’s concerns. In July of that year, he emailed headquarters, saying he no longer had “the resources to be successful at my job.” The customer service staff in Denver had been cut in half, Linafelter explained, and he’d been barred from hiring replacements. Denver’s remaining staff was “at a point of exhaustion,” threatening patient care.

The morning after Linafelter expressed concerns to Lincare in 2022, he was summoned to a conference call with the head of HR and fired, for what he was told was a “corporate restructuring.” Linafelter, who had worked at Lincare for nine years, said, “I got thrown away like a piece of trash.”

Other former employees offer similar accounts. In 2020, Jillian Watkins, a center manager in Huntington, West Virginia, repeatedly alerted supervisors that Lincare was improperly billing for equipment that patients weren’t using. Lincare blocked her from firing a subordinate who’d falsified documents supporting the charges, then fired Watkins, citing “inadequate direction and leadership.”

Then came a series of turns. Pedersen, the chief compliance officer, effectively confirmed Watkins’ assertions, belatedly alerting the government about $486,000 in improper billings by Lincare. But Pedersen blamed the billings on Watkins, writing to Medicare that the company had “terminated” her to “prevent [the problem] from recurring.” After Watkins sued, Pedersen admitted in a deposition that Watkins’ firing “had nothing to do with the overpayment.” In April 2024, a federal judge ruled that Watkins had presented “a prima facie case of retaliation.” The suit was privately settled in mediation.

Staggs, too, was ousted, he said, after he warned top Lincare executives about improper practices at the CPAP call centers. Staggs emailed a Lincare HR officer: “Patients are being shipped supplies that they never have ordered. … This is fraud and I have gotten zero support or attention to this matter when I raise the issue to my leadership.” Only months after starting, he was fired in November 2017. He later filed a whistleblower suit; Lincare denied wrongdoing. After the U.S. attorney’s office in Nashville declined to join the case in 2022, Staggs withdrew the action.

Staggs’ account of improper billings matches an industry pattern that appears to continue to this day. In a 2018 report, HHS’ inspector general estimated that Medicare had paid more than $631 million in improper claims for CPAP and other supplies over a two-year period. Another HHS analysis identified an additional $566 million in potential overpayments for apnea devices.

The agency’s oversight “was not sufficient to ensure that suppliers complied with Medicare requirements,” the 2018 report concluded. Six years later, HHS has not taken public action against Lincare relating to CPAPs.

Today, fraudulent billing among Medicare equipment providers remains a “major concern,” according to the inspector general. The agency says it continues to review the issue.

Doris Burke contributed research.

This post was originally published on ProPublica.

by Audrey Dutton, photography by Natalie Behring for ProPublica

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A police officer heard wailing as he approached the house in a farming community near Idaho Falls, Idaho. It was freezing cold in the predawn darkness of 6:10 a.m. on Feb. 1, and Alexis Cooley was “hysterical,” the officer wrote later. He followed her into the house.

To Alexis, nothing felt real in that moment. It was like her eyes were a video screen playing a movie. More officers and sheriff’s deputies arrived. An ambulance pulled up. When Alexis called 911 minutes before, she’d said between sobs and frantic pleas for help that the baby wasn’t breathing and his body was cold. Medics performed CPR on her newborn son’s 12-pound body, though it was futile.

Still, the medics asked: Would you like us to take him to the hospital? Yes, save my baby, Alexis remembers saying, and soon she was in her husband Diamond’s pickup truck, following the ambulance to the hospital.

The doctor pronounced Onyxx Cooley dead two minutes after arrival.

In the hours that followed, as Alexis and Diamond Cooley sat with their baby’s body, the search for answers about what took his life was supposed to begin. The person whose job is to find those answers, the elected coroner of Bonneville County, failed to do so.

He never asked Alexis and Diamond about the days preceding Onyxx’s death, never visited the scene, never performed a reenactment of the infant’s sleeping position, never ordered an autopsy. Some or all of these steps are prescribed by the Centers for Disease Control and Prevention, the U.S. Department of Justice, the National Association of Medical Examiners and the American Academy of Pediatrics when an otherwise healthy infant dies.

The guidelines exist to help coroners identify accidental suffocation, abuse or medical disorders that went undetected. The guidelines also make it possible to flag risks that, if discovered, may help keep other children alive.

“If you don’t look, you’re not going to find,” said Lauri McGivern, medicolegal death investigator coordinator in Vermont’s Office of the Chief Medical Examiner, chair of the National Association of Medical Examiners’ medicolegal death investigation committee and past president of the American Board of Medicolegal Death Investigators. “We need to know why infants are dying.”

But nothing in Idaho law says an elected county coroner must follow any national standards for death investigations. So, many of them don’t.

A child who dies unexpectedly or outside of a doctor’s care in Idaho is less likely to be autopsied than anywhere else in the United States.

In the case of baby Onyxx, without a word to Alexis or Diamond, Bonneville County coroner Rick Taylor simply decided the death was an unsolvable mystery.

A Frantic Moment

Alexis Johnson and Diamond Cooley met on Tinder shortly after high school and became parents to Jasper in 2019, Stohne in 2021 and Onyxx in 2023.

The Cooleys got married after Jasper was born. They separated a few years later, while Alexis was pregnant with Onyxx. The breakup wasn’t painless, but they worked through it. These days, they still speak in the shorthand of old friends and try to comfort each other; when Alexis starts to cry while talking about Onyxx, Diamond cracks a joke at his own expense, and she laughs.

They agreed to share custody of the boys. Diamond moved in with his mother in Idaho Falls, while Alexis stayed at her parents’ house in Shelley, about 20 minutes away.

Alexis and Diamond separated before Onyxx was born, but they agreed to co-parent and remained friendly, including after the loss of Onyxx. “I think that the most support that we have gotten for Onyxx has been between us,” Alexis said. “I knew that I wasn’t going through this alone, and I hope that he felt the same way.”

Based on prenatal ultrasounds, they weren’t surprised when Onyxx was born with a cleft palate and lip. It required road trips to see specialists in Salt Lake City and made feeding a little more complicated. Onyxx couldn’t breastfeed. He needed a special bottle. After a couple of scares — Onyxx choked on spit-up when she put him on his back — Alexis talked with his doctors and learned she should keep his upper body elevated for 30 minutes after he ate, to leave time for him to digest the formula.

But otherwise, Alexis couldn’t believe what an easy baby he was. He almost never cried — just smiled, cooed and kept his eyes on his big brothers. Alexis loved to watch Jasper or Stohne get up close to Onyxx, hold his hands and play with him; he would burst into kicks and smiles. Diamond remembers that as soon as Onyxx figured out how to smile, he never seemed to stop.

Onyxx Cooley (First image: Courtesy of Alexis Cooley. Second image: Courtesy of Diamond Cooley.)

What happened during the baby’s final hours is captured in police reports, 911 dispatch logs, a 911 call recording, Onyxx’s hospital records and Alexis’ recollections.

The night of Jan. 31, after putting their two older sons to bed, Alexis sat in the living room feeding Onyxx until he dozed off around 11 p.m. She carried him downstairs to their basement bedroom, where he lay propped on her legs facing her, while she sat playing Fortnite in bed.

As she lay down to sleep, Alexis propped a swaddled Onyxx in the crook of her outstretched arm. She woke expecting to feed him again around 3 a.m., but for the first time in his 10 weeks of life, Onyxx wasn’t ready for another meal. He was sound asleep, so she moved him off her arm and onto his back. She scooted over to the other side of the king-size bed, checked her phone, took a puff from an e-cigarette on her nightstand, then went back to sleep.

When she woke again around 6 a.m., Alexis rolled over to find Onyxx in the same position, swaddled. He was cold. A half-inch of yellowish-white foam came from his mouth. It looked like saliva with a little bit of blood in it.

Alexis tried to clear his airway — first with her finger, then by turning him over and doing the Heimlich maneuver she learned in a health care course. She ran upstairs with Onyxx, screaming for help. She called 911 and got some words out before handing the phone to her mother. Then Alexis called Diamond, who jumped in his truck and got to the house as the ambulance doors closed.

With Alexis and Diamond following behind in the pickup, the ambulance carrying Onyxx arrived at the emergency room of Eastern Idaho Regional Medical Center at 6:43 a.m. An ER doctor looked at the baby’s heart through an ultrasound. There was no life. Onyxx’s parents walked through the ER doors and, minutes later, the doctor delivered the news.

In an hour, at most, the doctor gave Onyxx a best-guess diagnosis of sudden infant death syndrome, or SIDS, according to the medical chart.

This was not supposed to be the final word, however.

Idaho law says when a child dies “without a known medical disease” like Onyxx did, a coroner must investigate.

As the ER doctor was finishing with Onyxx, a nurse made a phone call to the coroner for Bonneville County, where the hospital was located, to let him know a baby had died in his jurisdiction.

The Part-Timer

Rick Taylor, Bonneville County coroner, in the morgue in Idaho Falls

Rick Taylor considers himself a part-time coroner, even if his annual pay is $95,928 and the county payroll lists the position as full-time. He said he spends at least five hours a day in the office and is on call the remainder of the day.

If the county told him to work full time right now, “I’d send in my resignation,” he said. His hands are full attending to the health needs of his family, he said. He also travels often.

At age 68, his voice is reedy and soft. He has a full head of gray hair and wears a trim mustache to match. In a recent interview at work, he wore knee-length jean shorts and a short-sleeve plaid shirt. In contrast to the casual look, he rarely smiled and came off as reserved, even a bit stern at times.

Taylor works out of a squat, grayish building on a residential street near the railroad tracks. It doubles as the county morgue, with a walk-in cooler to store bodies. Taylor says visitors expect it to smell like death; it smelled like mint when a reporter stopped by in July.

During this visit, Taylor logged on to the state’s online portal for managing death certificates and worked through his list for the day, clicking electronic approvals for cremation and other paperwork. He took a phone query about a missing parolee who might have died. On his desk sat a file on the death of a man, reported missing in 1986, whose DNA was recently matched to a tibia bone found in 2009.

Taylor grew up in East Idaho, joined a local fire department in the early 1980s, got married and raised six children. Coroner seemed like a logical career progression; most Idaho coroners are first responders or morticians, jobs that already require them to evaluate people’s injuries and talk with grief-stricken families.

A Republican, Taylor was appointed to the office in 2012 after about 11 years as the coroner’s chief deputy. The job back then was part time and paid $18,000 a year. He said that when he recently persuaded commissioners to make it a full-time job at higher pay, he was merely setting up the office for future coroners to make a living wage.

Although some states hire licensed forensic pathologists as medical examiners, many others, like Idaho, have elected coroners who often have no medical degree.

But even states that elect coroners have some oversight. Some have professional boards that write regulations. Some require autopsies for all unexpected or unexplained child deaths. Some offer funding to ensure a baseline level of service. Some offer state money to transport bodies, a big expense in the vast expanses of the West.

Not Idaho.

One of its few requirements is to attend “coroner’s school” within a year of taking office and 24 hours of training every two years after that. There’s no penalty for failure, unlike in neighboring states, where consequences can be severe: suspended pay, forfeiture of the office or a misdemeanor charge. One in 4 Idaho coroners have repeatedly fallen short, according to records provided by the state coroners association. Those same records indicate Taylor hasn’t come close to hitting 24 hours since 2017-18; he didn’t respond to emails asking about the apparent shortfalls.

Taylor’s office doubles as the county morgue. The property is flanked by rental houses. Next to the building is a trailer-sized garage where Taylor parks the Chevrolet Suburban that he and his employees use to transport bodies.

The lack of regulation may help explain why the state has the nation’s lowest autopsy rate in child deaths attributed to unnatural or unknown causes — a category that includes suicides, homicides, crashes, drownings, overdoses and sudden infant deaths. A review by the state’s Office of Performance Evaluations this year found 49% of those deaths were autopsied in Idaho from 2018 through 2022, far below the national average of 79%.

A logbook that Taylor provided to ProPublica in response to a records request shows an even lower rate in Bonneville County during those years. He ordered autopsies in 33% of the 39 child deaths whose causes were, based on his notes, unnatural or unknown.

The unautopsied deaths included a 17-year-old girl found hanged at a juvenile detention center, which Taylor ruled a suicide. Taylor said he needed to look at his case file to comment on why he didn’t order an autopsy, when national guidelines say all deaths in detention should prompt one. He didn’t respond to subsequent requests to discuss it.

Taylor said he always orders autopsies in a sudden infant death without an obvious explanation, even when a parent is suspected of rolling over on the baby. But he makes exceptions, like if police don’t suspect a crime and the parents object to having an autopsy. Or if a doctor has already offered up a cause of death.

“Then we go with that,” he said. “There’s no reason to second-guess the doctors. I’m not a doctor.”

Guidelines from the National Association of Medical Examiners say an autopsy from a forensic pathologist is needed. The guidelines say nothing about an ER doctor’s examination sufficing.

Barrett Hillier, a former police detective who ran for coroner against Taylor in 2022, said police and coroners have different jobs to do when a baby dies — and one of those jobs isn’t getting done in Bonneville County.

“There’s nobody really out there investigating these deaths,” said Hillier, noting that police investigate “the criminal side” but that not all deaths are crimes, and the police aren’t always right. “There should be checks and balances.”

Taylor addressed such criticism in a 2022 campaign Facebook post praising the presence of law enforcement at death scenes, “doing what they do best.”

“The Coroner on scene is doing what is required and what we do best!” Taylor’s post said. “There is no need for duplication!”

Tensions With the Coroner

In the weeks leading up to baby Onyxx’s death, Bonneville County had come very close to losing its access to autopsies altogether.

Ada County, home to the state’s largest urban center, does autopsies under contract with Taylor and more than 30 other coroners around the state. With Taylor, this relationship was badly fraying.

Rich Riffle, the elected Ada County coroner and a fellow Republican, wrote a letter in January to the Bonneville County board of commissioners saying there were “multiple issues” with Taylor’s death investigations.

Taylor’s office “consistently furnishes inadequate information” ahead of autopsies, he wrote. Riffle said Taylor’s office sent over “mere summaries of the case, sometimes just a few sentences on homicide cases.”

For example, the only photographs Ada County was getting from death scenes were those taken by law enforcement officers. Their job is to document a possible crime scene, not to capture the details that a trained coroner would, like how a person’s skin color changes after they die.

Riffle’s pathologists needed more than Bonneville County was giving them to decipher deaths at an autopsy table 300 miles from the death scene.

Riffle said his staff made numerous attempts to tell Taylor what they needed and why, but Taylor’s response was “backlash and, at best, temporary cooperation.”

All of Riffle’s senior staff agreed “that this relationship, under the current circumstances, must end,” he wrote.

Taylor, in an interview, said his reports were brief because he didn’t see the point of duplicating the work of police. Riffle has been “real hard to work with since he got elected,” Taylor said.

In the end, Riffle relented — at the behest of police.

Local law enforcement officers, worried about the fate of their criminal cases if they had to go without autopsies, reached out to Riffle’s office: Would Ada County keep serving Bonneville County if officers volunteered to get coroner-style training?

Ada County contacted Taylor to see if he was interested, and he told them he was. Ada County sent three people to eastern Idaho to teach some basics. The police were enthusiastic about the training. Taylor attended. Riffle was satisfied and sent another letter to Bonneville’s commissioners, this time saying his office would continue to do their county’s autopsies.

“However,” Riffle wrote, “I must make this clear, we will not tolerate any reports that fall short of the basic level industry standards.” Sending the pathologists complete reports in preparation for autopsies was Taylor’s job, Riffle wrote, not law enforcement’s.

Riffle’s letter to Bonneville County happened to be dated Feb. 1, the same day Onyxx died. Taylor took the nurse’s call about Onyxx early that morning.

Taylor told the nurse he “would probably rule the cause of death as SIDS and would not be responding to the hospital,” according to a detective’s report. Nor did Taylor plan to order an autopsy.

But detectives from neighboring Bingham County, who’d just arrived at the hospital to question Alexis and Diamond, were not ready to let Taylor’s decision go unchallenged.

They decided to look for a second opinion.

A Matter of Public Health

Jimmy Roberts, Bingham County coroner, in his office in Blackfoot, Idaho

An hour after Onyxx was pronounced dead, a detective from Bingham County called Jimmy Roberts, according to Roberts’ phone records.

Roberts remembers the detective telling him what Taylor planned to do — or not do — including the decision to forgo an autopsy. Could Roberts try to change Taylor’s mind?

Roberts is the elected coroner of Bingham County, where Alexis lived and where medics, police and detectives had responded to her call about Onyxx’s lifeless body. But the baby was pronounced dead in a hospital 10 miles away, in Taylor’s county. Had Alexis opted not to send Onyxx to the hospital in a desperate grasp at the impossible, had he been pronounced dead at the scene, it would have been Roberts’ case without question.

Roberts, 57, has a different way of approaching his work than Taylor. Death investigations in Roberts’ office are consistent with national guidelines, a review of his reports shows. He sends most child and infant deaths to Ada County for autopsy.

Personal tragedy planted the seed in Roberts’ mind to become a coroner. He spent most of his adult life as a military corpsman, civilian emergency medic and firefighter. But in 2004, his father died of a gunshot wound to the chest in Boise County. Authorities at the time said they found the death suspicious but hadn’t ruled out the possibility of suicide.

The coroner’s written report, obtained by ProPublica through a records request, noted clues from the scene that contradicted statements of the man later convicted of voluntary manslaughter in the death. But Roberts didn’t like what he saw of the process. He was frustrated that Idaho entrusted death investigations to laypeople, elected coroners who can take office without any medical or legal training.

Roberts eventually took a job as a deputy coroner and later ran successfully for coroner of Bingham County in 2022, vowing to give every death its due. He worked 50 hours a week, using retirement pay from his past careers to supplement the coroner’s part-time salary, which was about $22,000 when he took office. He reopened old cases when families asked him to review a prior coroner’s work and he found it lacking.

Roberts has asked county commissioners for more money so that, when faced with two suspicious deaths, he wouldn’t have to decide which was more worthy of a full investigation.

Roberts asks Bingham County commissioners for a budget increase during a July meeting in Blackfoot, Idaho. After questioning his office’s expenses and criticizing the need for more investment, the board ultimately granted Roberts a portion of the new funding he sought.

His tenure has not been without controversy or criticism. Roberts was charged in 2022 with sexual battery, accused of grabbing a woman’s breasts. The allegation prompted county officials to call for his resignation and his deputy coroners to quit. A jury found him not guilty in 2023.

Roberts argues that getting sound answers in unexplained deaths is a matter of public health and safety. It’s a case he makes to anyone who will listen, and it’s why he joined the state’s child fatality review team, a volunteer group that meets year-round, under a governor’s executive order, to spot patterns that could save lives.

Taylor, in Bonneville County, has failed to provide any records to that committee for at least eight years. He’s been too busy, he told ProPublica. “It’s time, just, you know, to sit down and do it,” he said. (It took three months, and intervention from the county’s attorney, for Taylor to fulfill ProPublica’s request for his records of child death investigations.)

Roberts said the coroner’s job is to piece together a person’s final days to make sense of what happened. It honors a person’s life and ensures their death isn’t a black box from which no knowledge can ever be gained.

If the death of an infant or anyone else is written off as a senseless tragedy, Roberts said, “who the hell are you helping?”

The moment that Roberts understood what the Bingham County detective was telling him about Taylor and the death of Onyxx Cooley, he felt helpless.

“Somebody rolls into the emergency room with an infant, and they say, ‘Well, everything looked fine.’ The ER doc looks at him and says, ‘Oh, yeah, I can’t determine why they died.’ And the coroner decides not to send them to autopsy but sign it out as SIDS?” Roberts said in an interview. “That’s 100% bullshit.”

He knew that no one can call something SIDS without a full autopsy, toxicology testing, scene investigation, interviews with caregivers and reenactments with the people who saw the infant right before and after the death. “You cannot make that diagnosis without all of that information,” Roberts said.

Roberts wanted to help in the Onyxx Cooley case. He simply didn’t have the authority to override Taylor.

“Paperwork Autopsy”

Alexis with her and Diamond’s two other children, 5-year-old Jasper, left, and 3-year-old Stohne

At the hospital, Alexis and Diamond Cooley were talking with police. Family members had started to arrive, and everyone sat in a hospital room as the young parents reckoned with reality. Diamond remembers police asking a series of questions about their marriage and separation, which sounded to him like a suggestion that Alexis harmed Onyxx.

Alexis couldn’t shake the feeling that everyone was watching her, looking at her, eyeing her as the only person in the room when Onyxx died of some unknown cause.

The Cooleys remember nurses trying to help them cope with the grief, letting them sit with Onyxx until about 6 p.m., when it was time to take his body away. The hospital gave the family Onyxx’s handprints and footprints and plaster casts of his hands and feet.

By the time they walked out of the hospital, it was nightfall.

An officer that day had told Alexis that the coroner might want to do a reenactment of Onyxx’s sleeping environment, using a doll. She said she’d do it.

But the Cooleys learned from a funeral-home employee later that week that Taylor decided he didn’t need to do that part of the investigation. He had closed the case. He’d never contacted them.

The question of why Onyxx died lingered.

“It didn’t make any sense to me, right?” Diamond says. “He was a super healthy baby. And I was like, I don’t understand how it could be SIDS. Like, what else could it have been?”

The reenactment of the baby’s sleeping position that Taylor opted to skip might have offered clues. It is considered so crucial that Idaho’s coroners were offered specialized training in it in 2019. The class came with a doll for coroners to use in their counties. Taylor did not attend.

Here is what we know.

Safe sleep guidelines say babies should be placed on their backs in a crib or bassinet, with a firm mattress and no blankets, loose sheets, pillows or stuffed animals.

Onyxx was in an adult bed when he was found unresponsive. But Alexis said he was several feet away from her with no suffocation hazards nearby. Onyxx had suffered from dangerous reflux when sleeping on his back, but typically it happened immediately after a feeding; four hours had passed between when he last ate and when he was laid on his back.

The opportunity to understand what went wrong vanished when Onyxx was cremated.

In a one-page form labeled “Death Investigation,” provided in response to a record request, Taylor noted Onyxx’s cleft palate, recorded that Onyxx was last seen alive at 3 a.m. in bed with his mom and estimated the time of death as 4 to 4:30 a.m. Taylor’s handwritten narrative consisted of this: “found in bed w/mom — ‘foam’ in airway — unresponsive. Fed @ 23:30 — arrived ER in assystole — no response — EMS or ER.”

“We did basically what I call a ‘paperwork autopsy,’” Taylor said in a recent interview.

Asked about the fact that national guidelines require true, physical autopsies and other investigative steps when an infant dies suddenly, Taylor said Idaho law doesn’t require those guidelines to be followed. He didn’t see a need to go out to the hospital, visit the house where Onyxx died or speak with Onyxx’s parents. He’d talked with the doctor and with law enforcement officers who were at the scene.

“I don’t try to not figure things out. I don’t try to do the easy thing,” he said. “I haven’t been in this damn work for 23 years by just doing what is the easiest and the fastest way out.”

Less than a month after Onyxx died, 275 miles away at the state Capitol in Boise, a legislative committee heard about the structural problems plaguing Idaho’s coroner system.

An evaluator from the Office of Performance Evaluations, a nonpartisan watchdog agency, told the panel Idaho’s coroner system has fallen behind the U.S. for years and that the gap is widening as the state grows and forensic science matures.

The evaluator’s report suggested legislators consider policies used in other states, like requirements and state funding for autopsies in child deaths. Two efforts to require autopsies for SIDS deaths in Idaho failed 20 years ago, according to legislative records.

Alexis keeps Onyxx’s ashes in a butterfly-shaped necklace and has a tattoo of his handprint. After Onyxx died in February, Alexis didn’t hear from the county coroner responsible for investigating the baby’s cause of death. The coroner reached out to her for the first time in October, prompted by a reporter’s inquiry into his handling of the case. “It’s hard to just feel like my son wasn’t given the proper attention that he should have gotten,” she told ProPublica.

Alexis no longer blames herself for her baby’s death. Her therapist encourages her to avoid the “what if” questions because “it will just eat at me,” and no answer is capable of bringing Onyxx back.

Still, she said, had the facts of Onyxx’s death been properly examined, it might have helped spare another set of parents from what she and Diamond are going through.

It also might have answered one of the primary questions that drive the need for an autopsy: Are the other children at risk of dying from whatever killed the baby?

These days, after she puts the boys to bed, an alarm will go off six or seven times a night in Alexis’ traumatized brain: time to confirm her surviving children are still alive.

Diamond Cooley does it, too, on nights the boys are with him.

He stands there and watches 5-year-old Jasper and 3-year-old Stohne until their chests rise and fall. Stohne is a light breather, which means Diamond has a moment of panic until he can get a hand on the toddler’s chest.

While he’s there, sometimes Diamond adds another blanket. He can’t stand the feeling of cold skin anymore.

Diamond checks in on Jasper and Stohne after putting them to bed.

This post was originally published on ProPublica.

by Jessica Priest and Lomi Kriel, ProPublica and The Texas Tribune, and Eleanor Klibanoff, The Texas Tribune

Hundreds of thousands of Texas families have been waiting months for the state to process their Medicaid applications. The median processing time is 79 days despite a federal requirement to do so in 45 days. We’ve heard from families who say they could not access critical care during that time, such as not being able to afford to reset their child’s broken nose. Health care providers have reported patients struggling to get lifesaving heart surgeries.

The delays worsened after the federal government lifted pandemic-era protections last year. Our reporting shows that Texas rushed through the process, removing more than 900,000 children not because they were ineligible, but for procedural reasons like their families failing to fill out a form.

The backlog for food benefits is not much better. The state most recently reported having nearly 97,000 applications to process for the Supplemental Nutrition Assistance Program, or SNAP — often referred to as food stamps — and said that the median time it took was 33 days.

We are committed to reporting on long-standing issues with Texas’ social safety net and their root causes. We need help from those who know the delays firsthand and the harm they may cause: the families who rely on and are currently waiting for benefits. We want to show any failures to the people who are responsible for overseeing these systems — lawmakers, advocates, even the federal government — and explain where the state may be falling short of its obligations.

Please fill out the form below if:

• You’ve been waiting more than a month to hear about your Medicaid or SNAP application and have faced medical or financial consequences.
• You’ve worked with the state and can help us understand the reasons behind the persistent backlog, including IT glitches, staffing issues and funding shortages related to Medicaid or SNAP.
• You help people apply for benefits, or you are a health care worker or other expert with insight on this issue.

Filling out the form is the best way to get in touch, but we understand that life gets busy and sharing details of your situation may be easier to do with a reporter by phone. Please indicate on the form below if that is what you’d prefer.

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We appreciate you sharing your story, and we take your privacy seriously. We are gathering these stories for the purposes of our reporting and will contact you if we wish to publish any part.

If you would prefer to use Signal, an encrypted messaging app, see our advice at propublica.org/tips/#signal. You can also email our reporting team.

This post was originally published on ProPublica.

by Eleanor Klibanoff, The Texas Tribune, and Lomi Kriel, ProPublica and The Texas Tribune

This article is co-published with The Texas Tribune, a nonprofit, nonpartisan local newsroom that informs and engages with Texans. Sign up for The Brief Weekly to get up to speed on their essential coverage of Texas issues.

For three years during the coronavirus pandemic, the federal government gave Texas and other states billions of dollars in exchange for their promise not to exacerbate the public health crisis by kicking people off Medicaid.

When that agreement ended last year, Texas moved swiftly, kicking off more people faster than any other state.

Officials acknowledged some errors after they stripped Medicaid coverage from more than 2 million people, most of them children. Some people who believe they were wrongly removed are desperately trying to get back on the state and federally funded health care program, adding to a backlog of more than 200,000 applicants. A ProPublica and Texas Tribune review of dozens of public and private records, including memos, emails and legislative hearings, clearly shows that those and other mistakes were preventable and foreshadowed in persistent warnings from the federal government, whistleblowers and advocates.

Texas’ zealousness in removing people from Medicaid was a choice that contradicted federal guidelines from the start. That decision was devastating in Texas, which already insures a smaller percentage of its population through Medicaid than almost any other state and is one of 10 that never expanded eligibility after the passage of the Affordable Care Act.

“The difference in how Texas approached this compared to a lot of other states is and was very striking. It wanted everybody off, anybody extra off, even though we knew that meant that state systems would buckle under the pressure,” said Erin O’Malley, a senior policy analyst with Every Texan, a left-leaning statewide advocacy group.

Medicaid rolls swelled nationally during the pandemic, with tens of millions of people added to the program and no one removed. In Texas, the number of people receiving Medicaid benefits grew by more than 50%, to 6 million. When the federal government stopped requiring continuous coverage in April 2023, states had to determine who was no longer eligible.

The question wasn’t whether to remove people but instead how to do it in a way that caused the least disruption and ensured those who qualified stayed on.

To that end, the federal Centers for Medicare and Medicaid Services advised states to proceed slowly and rely heavily on existing government data to automatically renew eligible residents, steps the agency believed would prevent poor families from wrongly losing coverage. Congress gave states a year for the so-called “Medicaid unwinding.”

But Texas opted for speed, launching reviews of about 4.6 million cases in the first six months. It also decided against the more vigorous use of automatic renewals urged by the federal government, forcing nearly everyone to resubmit documents proving they qualified. Nearly 1.4 million of those who lost coverage were disenrolled for bureaucratic reasons like failing to return a form or completing one incorrectly, not because they weren’t eligible.

The decision to buck federal government guidelines was one of many that led to serious repercussions for Texas residents who rely on the program.

Among them were children forced to forgo or postpone lifesaving operations such as heart surgeries, said Dr. Kimberly Avila Edwards, an Austin pediatrician and Texas representative for the American Academy of Pediatrics. Children with severe diseases such as sickle cell anemia, as well as those with neurodevelopmental delays and autism, also unnecessarily lost critical care.

One of her colleagues treated a boy with a rare heart condition who lost Medicaid coverage in January after his parents failed to sign a form that even his caseworker was not aware the family needed to complete.

The boy’s parents couldn’t afford his $6,000 monthly pulmonary hypertension medication, nor could they pay for an ultrasound that would help determine whether he could survive without the drugs, said Avila Edwards, who declined to identify him because of medical privacy laws.

“If we have children who are less healthy, who are unable to get the preventative care they need for their chronic medical conditions, that fundamentally should raise concern for all of us,” she said.

The boy was eventually reenrolled in Medicaid after Texas pediatricians persuaded the state health agency to restore his coverage, Avila Edwards said.

Thomas Vasquez, a spokesperson for the Texas Health and Human Services Commission, acknowledged that the agency “learned many lessons” and is working to improve eligibility processes. HHSC representatives defended the rollout, saying that the agency conducted community outreach and hired more than 2,200 employees.

Texas’ approach to the Medicaid unwinding reflected the state’s long-standing conservative ideology regarding the government-subsidized program, said Simon Haeder, an associate professor at Texas A&M University’s School of Public Health.

As attorney general more than a decade ago, Gov. Greg Abbott helped lead a successful lawsuit against the federal government to ensure states didn’t have to cover more residents under Medicaid as part of the Affordable Care Act. Since then, Abbott and state lawmakers have continued to severely limit the program to mostly children, pregnant women and disabled adults. Poor adults aren’t typically eligible for Medicaid unless they have children. Parents of two kids must earn a combined income of less than $285 monthly to qualify for coverage.

A spokesperson for Abbott declined an interview on his behalf and did not respond to a request for comment on the state’s handling of the unwinding.

Texas’ stance during the unwinding, Haeder said, was, “We don’t do anything illegal, but we want to get our program as fast as we can down to what it was before the pandemic.”

Ignored Warnings

It was inevitable that the COVID-19 public health emergency would eventually end, as would the prohibition against pushing people off the rolls. Federal officials worried about the effects of the unwinding on vulnerable Americans almost from the start. In fact, the Biden administration repeatedly extended the emergency declaration, even after the peak of the crisis, to maintain safeguards that included keeping millions of low-income people on Medicaid.

Once the emergency officially ended in April 2023, states were free to cull their rolls. In preparation, federal officials advised states not to review more than 11% of their caseloads each month, cautioning that moving more quickly could overwhelm their systems and lead to the wrongful removal of eligible people.

But that was guidance, not a requirement, and Texas chose a far more aggressive plan.

In the first month of the unwinding, the state started the review process for about a million cases, or 17% of its caseload.

The federal government in May 2023 pressed Texas on why the state was moving so quickly. State officials downplayed the concerns, writing in an email obtained by the news organizations that they were frontloading people who most likely no longer qualified and were reviewing entire households at once.

Within the first four months of the unwinding, the state dropped more than 600,000 people from Medicaid. The vast majority were removed not because the state determined they were no longer eligible but for reasons such as failing to provide the proper documents in time.

That July, U.S. Health and Human Services Secretary Xavier Becerra called on Texas and other states to increase the number of eligible people they automatically renewed with existing government data. He warned in a letter that his agency would take action against states that were not complying.

In the same week, a group of employees anonymously emailed HHSC Executive Commissioner Cecile Young and media organizations, claiming senior management had alerted them that tens of thousands of people had improperly lost Medicaid due to the agency’s poor handling of the unwinding. Young’s chief of staff responded in an email that she couldn’t address the allegations of unidentified whistleblowers.

Texas alerted the federal government days later that it had erroneously dropped nearly 100,000 people, according to records obtained by the news organizations.

In August 2023, CMS once again implored the state to stop requiring eligible people to resubmit paperwork proving they still qualified. The federal agency said it appeared that many people didn’t know they needed to reenroll, didn’t understand the forms or faced obstacles in submitting the required information.

Other states that had taken a similar approach, such as Pennsylvania and Maine, made significant changes. Not Texas.

The state agency flagged to CMS last September that more than 30,000 kids lost their coverage, even though most of them should have been moved from Medicaid to the Children’s Health Insurance Program, according to emails the news organizations obtained through the state’s Public Information Act.

State officials later told the news organizations that 95,000 people had been wrongly removed, instead of close to 130,000, as originally reported to CMS. Asked why the figures had decreased, a spokesperson said the agency “provided approximate numbers as we worked to resolve the issue.” Agency representatives said the state quickly reinstated coverage and implemented changes to prevent further improper denials. They did not provide specifics.

Alarmed by the deluge of disenrollments, advocacy groups, health providers and newspaper editorial boards began calling on the state last summer to pause the unwinding and ensure people were not incorrectly losing coverage. It did not do so.

In October, after Texas had already disenrolled more than 1.2 million people, the state gave about 400,000 people who likely qualified for Medicaid an extra month to submit paperwork, according to an agency spokesperson.

Still, problems persisted.

In December, Becerra appealed directly to Abbott and eight other governors of states with the highest shares of children who had lost coverage. Texas accounted for nearly a quarter of all children in the U.S. who had lost Medicaid or CHIP during the unwinding, Becerra wrote. He again urged the state to employ a series of actions, including automatically renewing eligible people.

Without providing details, Becerra said the federal government would not hesitate to take action against states that did not comply with federal requirements.

“A One-Two Punch”

Three months later, Micaela Hoops’ children lost the government-subsidized health insurance for which they had qualified their entire lives. After years of not having to renew their Medicaid coverage under the pandemic rules, the 37-year-old North Texas mother said she was confused about when she was required to reapply and missed the deadline to provide proof of the family’s income.

Hoops sifts through paperwork from the Texas Health and Human Services Commission at her home in Sherman, Texas. (Danielle Villasana for ProPublica and The Texas Tribune)

In other states, the kids might have been automatically renewed using other government information, like quarterly payroll data reported by employers to the state or federal tax records. Instead, Hoops had to frantically reapply seven days after the coverage lapsed in March, submitting 24 pay statements for her husband’s weekly wages as a marketing director for a real estate company. This put the family at the back of a monthslong waiting list.

During that time, Hoops, a stay-at-home mom who homeschools the children, had to take her eldest son to the emergency room for a debilitating migraine. The visit came with a $3,000 bill that she and her husband could not pay. A few months later, the 14-year-old broke his nose while playing with his brother on a trampoline. She paid a few hundred dollars out of pocket for the doctor but couldn’t afford the CT scan required to reset his nose.

More than 100 days after Hoops reapplied, the state restored her children’s coverage retroactively. She hopes Medicaid will cover the hospital visit, but her son’s nose remains crooked.

“My children didn’t deserve to go without insurance,” Hoops said. “They’re kids. They have medical emergencies, things happen, and they deserve to be taken care of.”

Coverage for Hoops’ children wasn’t restored until more than 100 days after she reapplied. (Danielle Villasana for ProPublica and the Texas Tribune)

While Hoops’ children got their Medicaid back, some families that believe they wrongly lost Medicaid are still waiting after being forced to reapply. Texas’ median processing time for Medicaid applications is almost three months, according to a recent agency briefing obtained by the news organizations. This exceeds the federal limit of 45 days for most cases.

The sudden suspension of health insurance for a population the size of New Mexico has had additional ramifications in Texas, including higher treatment costs for hospitals and clinics forced to take on more uninsured patients.

Texas Children’s Hospital in Houston, the largest pediatric hospital in the country, laid off employees this year after significant budget shortfalls. A hospital spokesperson declined to comment, but, in a recent financial filing, the hospital attributed some of the challenges to losing Medicaid patients during the state’s unwinding process.

Across the state, some safety net clinics reported a 30% decrease in Medicaid revenue due to the unwinding, said Jana Eubank, who heads the Texas Association of Community Health Centers. She said the extra costs added to challenges for the already financially strapped facilities.

“Some centers are having to lay off staff. Some centers are furloughing staff,” Eubank said. “I’ve got a couple of CEOs that aren’t taking a salary right now. I’ve had centers that are unfortunately having to cut back certain services or extended hours, like behavioral health services, dental services, just because they can’t afford to continue to offer that care.”

Separately, some families that were pushed off Medicaid are also waiting more than a month for food assistance because Texas uses the same eligibility system to process applications for both.

San Antonio Food Bank CEO Eric Cooper said the nonprofit was crushed by demand this summer when families faced sudden medical bills, kids were out of school and the state had a backlog of more than 277,000 food stamp applications. The situation worsened when Texas declined to participate in a federal nutrition program, turning down an estimated $450 million that could have helped feed nearly 3.8 million poor children during the summer. HHSC officials said they could not get the program running in time.

“It’s felt like a one-two punch, the double whammy,” Cooper said.

“We haven’t really felt any relief since the Medicaid unwinding and the official end of the public health emergency,” he added. “It’s still an emergency. It’s still a crisis.”

Federal Investigation

In May, after Texas’ unwinding ended, the federal government launched an investigation into long waits faced by people who had applied for Medicaid coverage. Addressing these persistent delays was especially important because they affected eligible people who lost coverage in the past year, Sarah deLone, director of CMS’ Children and Adults Health Programs Group, wrote in a letter to the state.

Former federal officials and health policy experts called the probe a significant step by the agency, which typically works with states behind the scenes.

But CMS has few options to hold Texas accountable if it finds wrongdoing, said Joan Alker, executive director of the Center for Children and Families at Georgetown University in Washington, D.C. The Biden administration’s major enforcement tool is yanking federal funding, but that could cause low-income people to lose health insurance and invite a lawsuit from Texas, Alker said. And the investigation likely won’t go anywhere if Donald Trump wins in November, she said, since the former president previously encouraged states to restrict Medicaid access and promised to undo the Affordable Care Act entirely.

CMS spokesperson Stephanie Rossy declined to comment directly on its investigation or on Texas’ handling of the unwinding. But in a statement she wrote that “states’ choices have real consequences for eligible people’s ability to stay covered.”

Texas officials also declined to discuss the probe, but in a letter to the federal agency two weeks after the May investigation announcement, the state’s Medicaid director, Emily Zalkovsky, acknowledged that Texas experienced “severe operational and systems challenges” during the unwinding.

Although the federal probe was welcomed by advocacy groups, as well as some health care providers and Texas families, it’s unlikely to immediately help eligible people who lost Medicaid during the unwinding and are waiting to get back on.

While Hoops’ children have regained coverage, she believes that what her family endured reflects state leaders’ attitudes toward low-income people.

“Maybe they didn’t realize they were making cruel decisions,” she said. Still, she feels like the state’s mentality is basically, “Well, you just shouldn’t be dependent on us.”

Caught in Texas’ Medicaid and Food Stamp Application Backlog? Know Someone Who Is? Help Us Report.

This post was originally published on ProPublica.