The amounts represent what Medicaid spent covering the residents’ care when they lived at the Glenwood Resource Center, a state-run facility that closed last summer.

The bills are extraordinary examples of a practice called Medicaid estate recovery. Federal law requires states to try to collect money after some types of Medicaid recipients die. The point is to encourage people to use their own resources before relying on the public program. But some states, including Iowa, are particularly aggressive about the collections, national reports show.

Joy Higgins was stunned by a letter she received a few weeks after her 41-year-old daughter, Kristin, died last May. The letter was written on Iowa Department of Health and Human Services stationery. At the top, in bold letters, it said, “Re: Kristin Higgins.”

“Dear Joy Higgins,” the letter read. “Our sincere condolences to you, as we understand the above person is deceased.”

The letter explained that any money Kristin Higgins left behind would have to be remitted to the state to help repay Medicaid $4,263,148.67. Her family had 30 days to respond.

Joy Higgins, who lives in Council Bluffs, wonders why state debt collectors would send a massive bill to the family of someone like her daughter, who had little income because of a severe developmental disability stemming from a premature birth.

“What are they gaining? That’s my question. Except for kicking someone in the face right after they lost a loved one?” Higgins said.

Kristin Higgins’ only income was a Social Security disability benefit of $1,105 monthly. Most of that went directly to the state institution, where she lived for more than 30 years. Just $50 was set aside monthly as an allowance for personal expenses, according to a state ledger obtained by her family. “They knew exactly how much she had,” her mother said.

When she died, Kristin’s personal account had a balance of $2,239.84. The family put that money toward her funeral, an allowed expense. Nothing was left for the state to take. Higgins said receiving the letter was traumatic even though the family didn’t have to pay the Medicaid bill.

The Higginses have heard about similar attempts to collect from other families, including that of Eric Tomlyn, who died in 2020 at age 29 after spending most of his life at the Glenwood Resource Center.

Shortly after his death, the Tomlyn family received a Medicaid bill of more than $4.2 million. His mother, Susan Tomlyn, was shocked by the letter. “I was like, ‘What? What? Oh my God,’” she recalled.

She filled out a form explaining that the small balance in her son’s personal account had gone toward his funeral. “That’s the last I heard of it,” Tomlyn said.

Supporters of estate recovery efforts say the rules encourage people to pay for their own care before applying for Medicaid, which is mainly intended to help those with little money.

Critics of estate recovery programs say they often target families with little to give. Wealthier families tend to have lawyers who can structure estates in ways that avoid Medicaid repayment demands, the critics note.

Like Higgins, Tomlyn thought her Medicaid recovery bill came from state officials because it was printed on letterhead from the Iowa Department of Health and Human Services. The people who signed the letters identified themselves as being from the “Estate Recovery Program.” But the people who produce such letters work for private contractors hired to collect Medicaid debts, according to Alex Murphy, a spokesperson for the state agency. Their contract requires them to use state stationery.

Murphy said in an email to KFF Health News that such letters are sent after every death of an Iowa Medicaid recipient who was at least 55 years old or who lived in a long-term care facility. He said the letters “request information from family members regarding the deceased person’s assets and expenses,” and the letters note that repayments are expected only from the person’s estate.

Iowa’s Medicaid collections are handled by Sumo Group, a Des Moines company. Its director, Ben Chatman, declined to answer questions, including why the company sent bills to families of people with disabilities who lived most of their lives in state institutions. “I don’t do media relations,” Chatman said.

Sumo Group is a subcontractor of a national company, Gainwell Technologies, which has handled Medicaid collections for several states. In Iowa, the company is paid 11% of whatever it can collect from the estates of Medicaid participants. A spokesperson for Gainwell declined to comment.

Iowa’s Medicaid estate recovery program brought in $40.2 million in the fiscal year that ended last June, up nearly 14% from two years earlier, state records show. That total represents a sliver of the state’s total Medicaid budget, which is expected to hit $9 billion this year.

Nearly two-thirds of Iowa estate recovery cases wound up being closed with no collection of money last fiscal year, according to the state. In cases in which money was recouped, the average amount paid was about $10,000.

Thirty-five Iowa families were granted hardship waivers, which the state allows if an heir’s health or life would be endangered because payment of the Medicaid bill would deprive them of food, clothing, shelter, or medical care. Officials denied an additional 20 requests for hardship waivers.

A 2021 report to Congress estimated states collected more than $700 million annually from Medicaid participants’ estates. That money is shared with the federal government, which helps finance Medicaid. Some states claw back much less than others. Hawaii, for example, collected just $31,000 in 2019, the latest year analyzed in the federal report. Iowa, with about twice as many residents as Hawaii, raked back more than $26 million that year.

Americans aren’t subject to such clawbacks for using any other federal health program, including Medicare, which covers older people of all income levels.

The national group Justice in Aging has helped lead opposition to Medicaid estate recovery programs. Eric Carlson, a California attorney for the group, said the issue usually comes into play after the death of a person who had nursing home care covered by Medicaid. Recovery demands often force survivors to sell homes that are their families’ main form of wealth, he said.

Carlson said he hadn’t previously heard of Medicaid estate recovery bills topping $4 million, like the ones sent to survivors of the two Iowans with disabilities.

He wondered why debt collectors would pursue such cases, which are unlikely to yield any money but could cause anxiety for families. “Of course, if you open up a piece of mail that says you owe millions of dollars, you’re going to think the worst,” he said.

Carlson said he would advise anyone who receives such a letter to respond to it with documentation showing that their loved one’s estate can’t repay a Medicaid debt. “It’s never a good idea to ignore it,” he said. Failure to respond to the bill could lead to continued collection efforts, which could threaten a family member’s finances or property, he said.

Some states have reined in their Medicaid clawback efforts. For example, Massachusetts legislators last year voted to drastically limit their program. This was the second time Massachusetts reduced its Medicaid estate recovery effort, which once was one of the most aggressive in the U.S.

Critics in Congress have also tried to limit the practice.

Rep. Jan Schakowsky (D-Ill.) has twice introduced bills to eliminate the federal requirement that states claw back Medicaid spending from recipients’ estates. Last year’s bill gained 47 Democratic co-sponsors, but it received no support from the Republicans controlling the chamber, and there was no similar bill in the Senate. She plans to try again this year, even though her party remains in the minority.

Schakowsky said in an interview that she’d never heard of Medicaid estate recovery demands reaching millions of dollars, as the Iowa families faced. But demands for hundreds of thousands of dollars are common. For many families, “that’s still impossible” to meet, she said.

Schakowsky hopes that members of Congress from both parties will agree to curtail the program once they realize how much angst it causes their constituents and how relatively little money it returns to the government. “The whole program is ridiculous,” she said.

Her quest could become even tougher if the Trump administration moves ahead with proposals to trim Medicaid spending.

The office of Sen. Chuck Grassley, who is the senior member of Iowa’s all-Republican congressional delegation and has taken leading roles in many health policy debates, declined to comment on the issue.

The Iowa Department of Health and Human Services said it notifies families about the estate recovery process when they apply for Medicaid. Joy Higgins said she doesn’t recall seeing such a notice.

The institution where Kristin Higgins spent most of her life was closed last year after federal officials investigated complaints of poor medical care. But Joy Higgins said her daughter was treated well there overall. “If I had millions in the bank, I’d give it to the state,” she said. “I would. It was worth it.”

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But there’s actually some ambivalence about the parade’s absence in Kansas City. The celebration of the Chiefs’ win last year ended with a mass shooting that killed one person and injured at least 24 more. 

I’ve been talking to the survivors since then with my colleague Peggy Lowe at KCUR for a series we call “The Injured.” They’ve told us all about their lives since the shooting: about being left off the official list of victims, about doctors leaving bullets in their bodies, about the financial hardship of surviving, about the mental toll on the children who were shot, and about their efforts to restore a sense of safety in a society where gun violence is rampant. 

This week we published one last story about what therapists call the “thawing” of survivors. Many people who experience trauma emotionally freeze as a coping mechanism. But with time, that freeze melts, and the intensity of what happened to them can be suddenly overpowering. 

“Trauma pulls us into the past,” Gary Behrman told me. He’s a therapist who worked with witnesses of the 9/11 attacks in New York. 

Sights, smells, sounds, tastes, and touches can all trigger flashbacks that shut down the brain like an overloaded circuit breaker. The survivors in Kansas City told us about being triggered by loud noises, large crowds, and seeing police officers who remind them of the first responders at the shooting. 

And the shooting happened at a cultural institution, Union Station, so many survivors found themselves back there unexpectedly. Kids had field trips to a science center inside. Follow-up doctor visits were often on nearby Hospital Hill. An October dinner organized for survivors was less than a mile away, prompting one young survivor to decline the invitation. 

One survivor told me about a date she went on in December in downtown Kansas City. She doesn’t know the city well — she lives in Leavenworth, Kansas — so she was shocked to look up and see the intersection where a bullet ripped through her leg. 

“Oh f—,” she told her date, fighting tears and a panic attack until the station was out of view. 

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In South Dakota, too, official records show zero abortions that year.

And in Idaho, home to abortion battles that have recently made their way to the U.S. Supreme Court, the official number of recorded abortions was just five.

In nearly a dozen states with total or near-total abortion bans, government officials claimed that zero or very few abortions occurred in 2023, the first full year after the Supreme Court eliminated federal abortion rights.

Those statistics, the most recent available and published in government records, have been celebrated by anti-abortion activists. Medical professionals say such accounts are not only untrue but fundamentally dishonest.

“To say there are no abortions going on in South Dakota is ludicrous,” said Amy Kelley, an OB-GYN in Sioux Falls, South Dakota, citing female patients who have come to her hospital after taking abortion pills or to have medical procedures meant to prevent death or end nonviable pregnancies. “I can think of five off the top of my head that I dealt with,” she said, “and I have 15 partners.”

For some data scientists, these statistics also suggest a troubling trend: the potential politicization of vital statistics.

“It’s so clinically dishonest,” said Ushma Upadhyay, a public health scientist at the University of California-San Francisco, who co-chairs WeCount, an academic research effort that has kept a tally of the number of abortions nationwide since April 2022.

The zeroing out is statistically unlikely, Upadhyay said, and also runs counter to the reality that pregnancy “comes with many risks and in many cases emergency abortion care will be needed.”

“We know they are sometimes necessary to save the pregnant person’s life,” she said, “so I do hope there are abortions occurring in South Dakota.”

State officials reported a sharp decline in the official number of abortions after the Supreme Court overturned Roe v. Wade in June 2022.

• Arkansas reported zero abortions in 2023, compared with 1,621 in 2022.
• Texas reported 60 in 2023, after reporting 50,783 abortions in the state in 2021.
• Idaho reported five in 2023 compared with 1,553 in 2021.
• South Dakota, which had severely restricted abortions years ahead of the Dobbs ruling, reported zero in 2023 compared with 192 abortions in 2021.

Anti-abortion politicians and activists have cited these statistics to bolster their claims that their decades-long crusade to end abortion is a success.

“Undoubtedly, many Arkansas pregnant mothers were spared from the lifelong regrets and physical complications abortion can cause and babies are alive today in Arkansas,” Rose Mimms, executive director of Arkansas Right to Life, said in a press statement. “That’s a win-win for them and our state.”

A spokesperson for the Arkansas Department of Health, Ashley Whitlow, said in an email that the department “is not able to track abortions that take place out of the state or outside of a healthcare facility.” State officials, she said, collect data from “in-state providers and facilities for the Induced Abortion data reports as required by Arkansas law.”

WeCount’s tallies of observed telehealth abortions do not appear in the official state numbers. For instance, from April to June 2024 it counted an average of 240 telehealth abortions a month in Arkansas.

Groups that oppose abortion rights acknowledge that state surveillance reports do not tell the full story of abortion care occurring in their states. Mimms, of Arkansas Right to Life, said she would not expect abortions to be reported in the state, since the procedure is illegal except to prevent a patient’s death.

“Women are still seeking out abortions in Arkansas, whether it’s illegally or going out of state for illegal abortion,” Mimms told KFF Health News. “We’re not naive.”

The South Dakota Department of Health “compiles information it receives from health care organizations around the state and reports it accordingly,” Tia Kafka, its marketing and outreach director, said in an email responding to questions about the statistics. Kafka declined to comment on specific questions about abortions being performed in the state or characterizations that South Dakota’s report is flawed.

Kim Floren, who serves as director of the Justice Empowerment Network, which provides funds and practical support to help South Dakota patients receive abortion care, expressed disbelief in the state’s official figures.

“In 2023, we served over 500 patients,” she said. “Most of them were from South Dakota.”

“For better or worse, government data is the official record,” said Ishan Mehta, director for media and democracy at Common Cause, the nonpartisan public interest group. “You are not just reporting data. You are feeding into an ecosystem that is going to have much larger ramifications.”

When there is a mismatch in the data reported by state governments and credible researchers, including WeCount and the Guttmacher Institute, a reproductive health research group that supports abortion rights, state researchers need to dig deeper, Mehta said.

“This is going to create a historical record for archivists and researchers and people who are going to look at the decades-long trend and try to understand how big public policy changes affected maternal health care,” Mehta said. And now, the recordkeepers “don’t seem to be fully thinking through the ramifications of their actions.”

A Culture of Fear

Abortion rights supporters agree that there has been a steep drop in the number of abortions in every state that enacted laws criminalizing abortion. In states with total bans, 63 clinics have stopped providing abortions. And doctors and medical providers face criminal charges for providing or assisting in abortion care in at least a dozen states.

Practitioners find themselves working in a culture of confusion and fear, which could contribute to a hesitancy to report abortions — despite some state efforts to make clear when abortion is allowed.

For instance, South Dakota Department of Health Secretary Melissa Magstadt released a video to clarify when an abortion is legal under the state’s strict ban.

The procedure is legal in South Dakota only when a pregnant woman is facing death. Magstadt said doctors should use “reasonable medical judgment” and “document their thought process.”

Any doctor convicted of performing an unlawful abortion faces up to two years in prison.

In the place of reliable statistics, academic researchers at WeCount use symbols like dashes to indicate they can’t accurately capture the reality on the ground.

“We try to make an effort to make clear that it’s not zero. That’s the approach these departments of health should take,” said WeCount’s Upadhyay, adding that health departments “should acknowledge that abortions are happening in their states but they can’t count them because they have created a culture of fear, a fear of lawsuits, having licenses revoked.”

“Maybe that’s what they should say,” she said, “instead of putting a zero in their reports.”

Mixed Mandates for Abortion Data

For decades, dozens of states have required abortion providers to collect detailed demographic information on the women who have abortions, including race, age, city, and county — and, in some cases, marital status and the reason for ending the pregnancy.

Researchers who compile data on abortion say there can be sound public health reasons for monitoring the statistics surrounding medical care, namely to evaluate the impact of policy changes. That has become particularly important in the wake of the Supreme Court’s 2022 Dobbs decision, which ended the federal right to an abortion and opened the door to laws in Republican-led states restricting and sometimes outlawing abortion care.

Isaac Maddow-Zimet, a Guttmacher data scientist, said data collection has been used by abortion opponents to overburden clinics with paperwork and force patients to answer intrusive questions. “It’s part of a pretty long history of those tools being used to stigmatize abortion,” he said.

In South Dakota, clinic staff members were required to report the weight of the contents of the uterus, including the woman’s blood, a requirement that had no medical purpose and had the effect of exaggerating the weight of pregnancy tissue, said Floren, who worked at a clinic that provided abortion care before the state’s ban.

“If it was a procedural abortion, you had to weigh everything that came out and write that down on the report,” Floren said.

The Centers for Disease Control and Prevention does not mandate abortion reporting, and some Democratic-led states, including California, do not require clinics or health care providers to collect data. Each year, the CDC requests abortion data from the central health agencies for every state, the District of Columbia, and New York City, and these states and jurisdictions voluntarily report aggregated data for inclusion in the CDC’s annual “Abortion Surveillance” report.

In states that mandate public abortion tracking, hospitals, clinics, and physicians report the number of abortions to state health departments in what are typically called “induced termination of pregnancy” reports, or ITOPs.

Before Dobbs, such reports recorded procedural and medication abortions. But following the elimination of federal abortion rights, clinics shuttered in states with criminal abortion bans. More patients began accessing abortion medication through online organizations, including Aid Access, that do not fall under mandatory state reporting laws.

At least six states have enacted what are called “shield laws” to protect providers who send pills to patients in states with abortion bans. That includes New York, where Linda Prine, a family physician employed by Aid Access, prescribes and sends abortion pills to patients across the country.

Asked about states reporting zero or very few abortions in 2023, Prine said she was certain those statistics were wrong. Texas, for example, reported 50,783 abortions in the state in 2021. Now the state reports on average five a month. WeCount reported an average of 2,800 telehealth abortions a month in Texas from April to June 2024.

“In 2023, Aid Access absolutely mailed pills to all three states in question — South Dakota, Arkansas, and Texas,” Prine said.

Texas Attorney General Ken Paxton filed a lawsuit in January against a New York-based physician, Maggie Carpenter, co-founder of the Abortion Coalition for Telemedicine, for prescribing abortion pills to a Texas patient in violation of Texas’ near-total abortion ban. It’s the first legal challenge to New York’s shield law and threatens to derail access to medication abortion.

Still, some state officials in states with abortion bans have sought to choke off the supply of medication that induces abortion. In May, Arkansas Attorney General Tim Griffin wrote cease and desist letters to Aid Access in the Netherlands and Choices Women’s Medical Center in New York City, stating that “abortion pills may not legally be shipped to Arkansas” and accusing the medical organizations of potentially “false, deceptive, and unconscionable trade practices” that carry up to $10,000 per violation.

Good-government groups like Common Cause say that the dangers of officials relying on misleading statistics are myriad, including a disintegration of public trust as well as ill-informed legislation.

These concerns have been heightened by misinformation surrounding health care, including an entrenched and vocal anti-vaccine movement and the objections of some conservative politicians to mandates related to covid-19, including masks, physical distancing, and school and business closures.

“If the state is not going to put in a little more than the bare minimum to just find out if their data is accurate or not,” Mehta said, “we are in a very dangerous place.”

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Emily Tavis was on a first date in December when she looked up and realized they were driving past the downtown Kansas City, Missouri, intersection where a bullet ripped through her leg at last year’s Super Bowl victory parade.

“Oh f—,” Tavis said, bewildering her date.

She lives 35 miles away in Leavenworth, Kansas, and hadn’t yet returned to Union Station, where the mass shooting happened. She felt like crying. Or maybe it was a panic attack. She held up a finger signaling to her date that she needed a moment. That’s when it hit him, too.

“Oh crap, I didn’t even realize,” he said, and kept driving in silence.

Tavis sucked in her tears until the station was out of view.

“So anyway,” she said aloud, while thinking to herself, “way to go. Panic attack, first date.”

A year after the Feb. 14 shooting that killed one and injured at least 24 people, the survivors and their families are still reeling. Relationships have strained. Parents are anxious about their children. The generous financial support and well wishes that poured through in early days have now dried up. And they’re ambivalent about the team they all root for; as the Chiefs moved on to another Super Bowl, many wondered why their beloved team hasn’t acknowledged what they have all been going through.

“I can’t believe the Chiefs didn’t do anything for us,” said Jacob Gooch Sr., who was shot in the foot. The team, the owner family’s foundation, and the National Football League gave a combined $200,000 to a fund for survivors, but Gooch said no one from the organization reached out to his family, three members of whom were shot.

What’s happening to these families is far from unusual. Many survivors emotionally freeze as a coping mechanism to avoid fully feeling the trauma they suffered. But with time, survivors experience what therapists call “thawing,” and the intensity of what happened can suddenly overpower them like it did Tavis.

“Trauma pulls us into the past,” said Gary Behrman, a therapist who published a model of crisis intervention based on his work with witnesses of the 9/11 attacks in New York.

Sights, smells, sounds, tastes, and touches can all trigger flashbacks that shut down the brain like an overloaded circuit breaker. It’s a survival response, Behrman said; the brain is a friend.

The key to recovery is to help survivors find healthy ways to manage those triggers — when they are ready.

Survivors thaw at their own pace. Regaining control after a life-threatening event is a process that can take weeks, months, or years.

It can be hard not to feel forgotten when life carries on around them. As fans rallied around the Chiefs this season, survivors found it hard to watch the games. The Chiefs lost to the Philadelphia Eagles in Sunday’s Super Bowl. Philadelphia will hold its own parade on Friday, exactly one year after the shooting.

“It sucks because everybody else went on,” Jason Barton said. He performed CPR on a man he now thinks was one of the alleged shooters, his wife found a bullet slug in her backpack, and his stepdaughter was burned by sparks from a ricocheted bullet.

“If we were on the other side of that place, we would too,” he said. “It wouldn’t have affected us.”

A Trip Back to Union Station

Tavis isn’t the only survivor to have found herself unintentionally back at Union Station in the year since the shooting. Kids had field trips to Science City, located inside the station. Follow-up doctor visits were often on nearby Hospital Hill. An October dinner organized for survivors by a local faith-based group was less than a mile away, prompting one young survivor to decline the invitation.

Tavis had planned to return to Union Station as part of her healing process. She thought she would go on the one-year mark to have a moment alone to feel whatever emotions swept over her there.

Maybe God was showing her she was ready by placing her back there unexpectedly, her therapist told her. Maybe. But she didn’t feel ready in that moment.

Tavis wanted to see a therapist right after the shooting. But she didn’t seek one out until July, after the local United Way distributed financial assistance to survivors and relieved the months-long financial strain of lost work and medical bills incurred by many. Tavis and her partner at the time had taken out an extra credit card to cover expenses while they waited for the promised help.

After two months of visits, her therapist started prepping Tavis for eye movement desensitization and reprocessing, a technique to help trauma survivors. She now spends every other session making her way through a spreadsheet of memories from the parade, visualizing and reprocessing them one by one.

She’s nervous as the one-year mark approaches. It’s on Valentine’s Day, and she worries it’ll be depressing.

She decided to invite Gooch, her former partner, to come to Union Station with her that day. Despite everything, he’s the one who understands. They were at the parade together with their son and Jacob’s two older kids. Both Gooch Sr. and his older son, Jacob Gooch Jr., were also shot.

Trauma Changes Who We Are

Gooch Sr. hasn’t worked since the parade. His job required standing for 10-hour shifts four days a week, but he couldn’t walk for months after a bullet shattered a bone in his foot and it slowly fused back together. He hoped to go back to work in July. But his foot didn’t heal correctly and he had surgery in August, followed by weeks of recovery.

His short-term disability ran out, as did his health insurance through work. His employer held his job for a while before releasing him in August. He’s applied for other jobs in and around Leavenworth: production, staffing agencies, auto repair. Nothing’s come through.

“We’ve all gone through problems, not just me,” Gooch Sr. said. “I got shot in my foot and haven’t worked for a year. There are people that have been through much worse stuff over the past year.”

He feels good walking now and can run short distances without pain. But he doesn’t know if he’ll ever play football again, a mainstay of his life since he can remember. He played safety for the semiprofessional Kansas City Reapers and, before the parade, the 38-year-old was considering making the 2024 season his last as a player.

“A lot more than football has been stolen from me in this last year. Like my whole life has been stolen from me,” Gooch Sr. said. “I really hate that part of it.”

And those emotions are painfully real. Trauma threatens our beliefs about ourselves, said Behrman, the therapist. Every person brings their own history to a traumatic event, a different identity that risks being shattered. The healing work that comes later often involves letting go and building something new.

Recently Gooch Sr. started going to a new church, led by the husband of someone he sang with in a children’s choir growing up. At a Sunday service this month, the pastor spoke about finding a path when you’re lost.

“I’m looking for the path. I’m in the grass right now,” Gooch Sr. said at his home later that evening.

“I’m obviously on a path, but I don’t know where I’m headed.”

‘I Did the Best I Could’

Every day before Jason Barton goes to work, he asks his wife, Bridget, if he should stay home with her.

She’s said yes enough that he’s out of paid time off. Jason, who’s survived cancer and a heart attack, had to take unpaid leave in January when a bad case of the flu put him in the hospital. That’s real love, Bridget said with tearful eyes, sitting with Jason and her 14-year-old daughter, Gabriella, in their home in Osawatomie, Kansas.

Bridget has connected with the mother of another girl injured in the shooting. They’ve exchanged texts and voicemails throughout the year. It’s nice to have someone to talk to who gets it, Bridget said. They’re hoping to get the girls together to build a connection as well.

Except for a trip to therapy once a week, Bridget doesn’t leave the house much anymore. It can feel like a prison, she said, but she’s too scared to leave. “It’s my own internal hell,” she said. She keeps thinking about that bullet slug that lodged in her backpack. What if she’d been standing differently? What if they’d left 10 seconds earlier? Would things be different?

A Post-it note in her kitchen reminds her: “I’m safe. Gabriella is safe. I did the best I could.”

She carries a lot of guilt. About Jason staying home. About not leaving the house, even to see her grandkids. About wanting the family to go to the parade in the first place. At the same time, she knows she kind of thrived in the chaos after the shooting, taking charge of her daughter, talking to the police. It’s confusing.

The family has carried the trauma differently. In the six months after the parade, Jason watched reality TV shows that kept him out of his head — 23 seasons of “Deadliest Catch” and 21 seasons of “Gold Rush,” including spinoffs, he estimated. Lately he’s kept his mind occupied with a new hobby: building model cars and planes. He just finished a black 1968 Shelby Mustang, and next is an F4U-4 Corsair plane that Bridget got him.

Gabriella was unfazed about returning to Union Station for a class field trip to Science City, but she was startled when she saw a group of police officers inside the station. Her mom watched her location on her phone and texted her all day.

Gabriella took up boxing after the parade, then switched to wrestling. It had been going well, even felt empowering. But she’s stopped going, and Bridget thinks it’s partly due to the emotion of the anniversary — the first is always the hardest, her therapist said. Gabriella insisted that wrestling was just exhausting her.

Because they weren’t shot, the family didn’t benefit from resources available to other survivors. They understand that other families are recovering from bullet wounds or even mourning a death.

Still, it would be nice to have some acknowledgment of their emotional trauma. Their names have been in the news. You’d think the Chiefs would have at least sent a letter saying, “We’re sorry this happened to you,” Jason said.

Jason proposed to Bridget at a Chiefs game. Now watching games on TV triggers flashbacks.

“I want to be a part of Chiefs Kingdom again,” Bridget said, “but I just can’t. And that is a huge, really lonely feeling.”

‘There Is a Word Called “Resilience”’

One evening last October, survivors gathered with their families at a Mexican restaurant in downtown Kansas City.

Some came dressed in their Sunday best, some in red football jerseys. All ages, toddlers to 70-somethings, some from Missouri, some from Kansas. Some spoke only Spanish, some only English. Most of the two dozen people had never met before. But as they talked, they discovered the shooting that binds them also gave them a common language.

Two young boys realized they’d tossed a football during the jubilation before the violence erupted. A woman in her early 70s named Sarai Holguin remembered watching them play on that warm February day. After a blessing and dinner, Holguin, who was shot in the knee and has had four surgeries, stood to address the room.

“I was the first victim taken to the medical tent,” she said in Spanish, her words translated by a relative of another survivor. She saw everything, she explained, as, one by one, more survivors were brought to the tent for treatment, including Lisa Lopez-Galvan, a 43-year-old mother who was killed that day.

Yet in that tragedy, Holguin saw the beauty of people helping one another.

“This showed us that humanity is still alive, that love is still alive. There is a word called ‘resilience,’” Holguin said, the translator stumbling to understand the last word, as people in the audience caught it and shouted it out. “Resilience.”

“This word helps us overcome the problems we face,” Holguin said. “To try to put the tragic moment we all lived behind us and move on, we must remember the beautiful moments.”

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Three years later, he landed in an inpatient hospital after expressing suicidal thoughts.

After more than a decade cycling through juvenile detention, foster care placements, and state prisons, Valdez realizes now that treatment for his mental health conditions would have made life on his own much easier.

“It’s not until you’re put in, like, everyday situations and you respond adversely and maladaptive,” he said, “you kind of realize that what you went through had an effect on you.”

“I was struggling with a lot of mental stuff,” said Valdez, now 27.

For years, people like Valdez have often been left to fend for themselves when seeking health care services after their release from jail, prison, or other carceral facilities. Despite this population’s high rate of mental health problems and substance use disorders, they often return to their communities with no coverage, which increases their chances of dying or suffering a lapse that sends them back behind bars.

A new federal law aims to better connect incarcerated children and young adults who are eligible for Medicaid or the Children’s Health Insurance Program to services before their release. The goal is to help prevent them from developing a health crisis or reoffending as they work to reestablish themselves.

“This could change the trajectory of their lives,” said Alycia Castillo, associate director of policy for the Texas Civil Rights Project. Without that treatment, she said, many young people leaving custody struggle to reintegrate into schools or jobs, become dysregulated, and end up cycling in and out of detention facilities.

Medicaid has historically been prohibited from paying for health services for incarcerated people. So jails, prisons, and detention centers across the country have their own systems for providing health care, often funded by state and local budgets and not integrated with a public or private health system.

The new law is the first change to that prohibition since the Medicare and Medicaid Act’s inception in 1965, and it came in a spending bill signed by President Joe Biden in 2022. It took effect Jan. 1 this year, and requires all states to provide medical and dental screenings to Medicaid- and CHIP-eligible youths 30 days before or immediately after they leave a correctional facility. Youths must continue to receive case management services for 30 days after their release.

More than 60% of young people who are incarcerated are eligible for Medicaid or CHIP, according to a September 2024 report from the Center for Health Care Strategies. The new law applies to children and young adults up to age 21, or 26 for those who, like Valdez, were in foster care.

Putting the law into practice, however, will require significant changes to how the country’s thousands of correctional facilities provide health care to people returning to communities, and it could take months or even years for the facilities to be fully in compliance.

“It’s not going to be flipping a switch,” said Vikki Wachino, founder and executive director of the Health and Reentry Project, which has been helping states implement the law. “These connection points have never been made before,” said Wachino, a former deputy administrator of the Centers for Medicare & Medicaid Services.

The federal CMS under the Biden administration did not respond to a question about how the agency planned to enforce the law.

It’s also unclear whether the Trump administration will force states to comply. In 2018, President Donald Trump signed legislation requiring states to enroll eligible youths in Medicaid when they leave incarceration, so they don’t experience a gap in health coverage. The law Biden signed built on that change by requiring facilities to provide health screenings and services to those youths, as well as ones eligible for CHIP.

Even though the number of juveniles incarcerated in the U.S. has dropped significantly over the past two decades, more than 64,000 children and young adults 20 and younger are incarcerated in state prisons, local and tribal jails, and juvenile facilities, according to estimates provided to KFF Health News by the Prison Policy Initiative, a nonprofit research organization that studies the harm of mass incarceration.

A ‘Neglected Part of the Health System’

The federal Bureau of Justice Statistics estimates that about a fifth of the country’s prison population spent time in foster care. Black youths are nearly five times as likely as white youths to be placed in juvenile facilities, according to the Sentencing Project, a nonprofit that advocates for reducing prison and jail populations.

Studies show that children who receive treatment for their health needs after release are less likely to reenter the juvenile justice system.

“Oftentimes what pulls kids and families into these systems is unmet needs,” said Joseph Ribsam, director of child welfare and juvenile justice policy at the Annie E. Casey Foundation and a former state youth services official. “It makes more sense for kids to have their health care tied to a health care system, not a carceral system.”

Yet many state and local facilities and state health agencies nationwide will have to make a lot of changes before incarcerated people can receive the services required in the law. The facilities and agencies must first create systems to identify eligible youths, find health care providers who accept Medicaid, bill the federal government, and share records and data, according to state Medicaid and corrections officials, as well as researchers following the changes.

In January, the federal government began handing out around $100 million in grants to help states implement the law, including to update technology.

Some state officials are flagging potential complications.

In Georgia, for example, the state juvenile justice system doesn’t have a way to bill Medicaid, said Michelle Staples-Horne, medical director for the Georgia Department of Juvenile Justice.

In South Dakota, suspending someone’s Medicaid or CHIP coverage while they are incarcerated instead of just ending it is a challenge, Kellie Wasko, the state’s secretary of corrections, said in a November webinar on the new law. That’s a technical change that’s difficult to operationalize, she said.

State Medicaid officials also acknowledged that they can’t force local officials to comply.

“We can build a ball field, but we can’t make people come and play ball,” said Patrick Beatty, deputy director and chief policy officer for the Ohio Department of Medicaid.

States should see the law as a way to address a “neglected part of the health system,” said Wachino, the former CMS official. By improving care for people transitioning out of incarceration, states may spend less money on emergency care and on corrections, she said.

“Any state that is dragging its feet is missing an opportunity here,” she said.

‘Our System Is Making People Worse’

The Texas Department of Family Services took custody of Valdez when he was 8 because his mother’s history of seizures made her unable to care for him, according to records. Valdez said he ran away from foster care placements because of abuse or neglect.

A few years later, he entered the Texas juvenile justice system for the first time. Officials there would not comment on his case. But Valdez said that while he was shuffled between facilities, his antidepressant and antipsychotic medications would be abruptly stopped and his records rarely transferred. He never received therapy or other support to cope with his childhood experiences, which included sexual abuse, according to his medical records.

Valdez said his mental health deteriorated while he was in custody, from being put in isolation for long periods of time, the rough treatment of officials, fears of violence from other children, and the lack of adequate health care.

“I felt like an animal,” Valdez said.

In August, the U.S. Department of Justice released a report that claims the state exposes children in custody to excessive force and prolonged isolation, fails to protect them from sexual abuse, and fails to provide adequate mental health services. The Texas Juvenile Justice Department has said it is taking steps to improve safety at its facilities.

In 2024, 100% of children in Texas Juvenile Justice Department facilities needed specialized treatment, including for problems with mental health, substance use, or violent behavior, according to the department.

Too often, “our system is making people worse and failing to provide them with the continuity of care they need,” said Elizabeth Henneke, founder and CEO of the Lone Star Justice Alliance, a nonprofit law firm in Texas.

Valdez said trauma from state custody shadowed his life after release. He was quick to anger and violence and often felt hopeless. He was incarcerated again before he had a breakdown that led to his hospitalization in 2022. He was diagnosed with post-traumatic stress disorder and put on medication, according to his medical records.

“It helped me understand that I wasn’t going crazy and that there was a reason,” he said. “Ever since then, I’m not going to say it’s been easy, but it’s definitely been a bit more manageable.”

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But the CEO of Herbruck’s Poultry Ranch wasn’t sure how the family egg producer (one of the largest in the U.S., in business for over three generations) was going to get through it, financially or emotionally. One staffer broke down in Herbruck’s office in tears.

“The mental toll on our team of dealing with that many dead chickens is just, I mean, you can’t imagine it,” Herbruck said. “I didn’t sleep. Our team didn’t sleep.”

The stress of watching tens of thousands of sick birds die of avian flu each day, while millions of others waited to be euthanized, kept everyone awake.

In April 2024, as his first hens tested positive for the highly pathogenic avian influenza H5N1 virus, Herbruck turned to the tried-and-true U.S. Department of Agriculture playbook, the “stamping-out” strategy that helped end the 2014-15 bird flu outbreak, which was the largest in the U.S. until now.

Within 24 to 48 hours of the first detection of the virus, state and federal animal health officials work with farms to cull infected flocks to reduce the risk of transmission. That’s followed by extensive disinfection and months of surveillance and testing to make sure the virus isn’t still lurking somewhere on-site.

Since then, egg farms have had to invest millions of dollars into biosecurity. For instance, employees shower in and shower out, before they start working and after their shifts end, to prevent spreading any virus. But their efforts have not been enough to contain the outbreak that started three years ago.

This time, the risk to human health is only growing, experts say. Sixty-six of the 67 total human cases in the United States have been just since March, including the nation’s first human death, reported last month.

“The last six months have accelerated my concern, which was already high,” said Nahid Bhadelia, an infectious diseases physician and the founding director of Boston University’s Center on Emerging Infectious Diseases.

Controlling this virus has become more challenging, precisely because it’s so entrenched in the global environment, spilling into mammals such as dairy cows, and affecting roughly 150 million birds in commercial and backyard flocks in the U.S.

Because laying hens are so susceptible to the H5N1 virus, which can wipe out entire flocks within days of the first infection, egg producers have been on the front lines in the fight against various bird flu strains for years. But this moment feels different. Egg producers and the American Egg Board, an industry group, are begging for a new prevention strategy.

Many infectious disease experts agree that the risks to human health of continuing current protocols are unsustainable, because of the strain of bird flu driving this outbreak.

“The one we’re battling today is unique,” said David Swayne, former director of the Southeast Poultry Research Laboratory at the USDA’s Agricultural Research Service and a leading national expert in avian influenza.

“It’s not saying for sure there’s gonna be a pandemic” of H5N1, Swayne said, “but it’s saying the more human infections, the spreading into multiple mammal species is concerning.”

For Herbruck, it feels like war. Ten months after Herbruck’s Poultry Ranch was hit, the company is still rebuilding its flocks and rehired most of the 400 workers it laid off.

Still, he and his counterparts in the industry live in fear, watching other farms get hit two, even three times in the past few years.

“I call this virus a terrorist,” he said. “And we are in a battle and losing, at the moment.”

When Biosecurity Isn’t Working … or Just Isn’t Happening

So far, none of the 23 people who contracted the disease from commercial poultry have experienced severe cases, but the risks are still very real. The first human death was a Louisiana patient who had contact with both wild birds and backyard poultry. The person was over age 65 and reportedly had underlying medical conditions.

And the official message to both backyard farm enthusiasts and mega-farms has been broadly the same: Biosecurity is your best weapon against the spread of disease.

But there’s a range of opinions among backyard flock owners about how seriously to take bird flu, said Katie Ockert, a Michigan State University Extension educator who specializes in biosecurity communications.

Skeptics think that “we’re making a mountain out of a molehill,” Ockert said, or that “the media is maybe blowing it out of proportion.” This means there are two types of backyard poultry enthusiasts, Ockert said: those doing great biosecurity, and those who aren’t even trying.

“I see both,” she said. “I don’t feel like there’s really any middle ground there for people.”

And the challenges of biosecurity are completely different for backyard coops than massive commercial barns: How are hobbyists with limited time and budgets supposed to create impenetrable fortresses for their flocks, when any standing water or trees on the property could draw wild birds carrying the virus?

Rosemary Reams, an 82-year-old retired educator in Ionia, Michigan, grew up farming and has been helping the local 4-H poultry program for years, teaching kids how to raise poultry. Now, with the bird flu outbreak, “I just don’t let people go out to my barn,” she said.

Reams even swapped real birds with fake ones for kids to use while being assessed by judges at recent 4-H competitions, she said.

“We made changes to the fair last year, which I got questioned about a lot. And I said, ‘No, I gotta think about the safety of the kids.’”

Reams was shocked by the news of the death of the Louisiana backyard flock owner. She even has questioned whether she should continue to keep her own flock of 20 to 30 chickens and a pair of turkeys.

“But I love ’em. At my age, I need to be doing it. I need to be outside,” Reams said. “That’s what life is about.” She said she’ll do her best to protect herself and her 4-H kids from bird flu.

Even “the best biosecurity in the world” hasn’t been enough to save large commercial farms from infection, said Emily Metz, president and CEO of the American Egg Board.

The egg industry thought it learned how to outsmart this virus after the 2014-15 outbreak. Back then, “we were spreading it amongst ourselves between egg farms, with people, with trucks,” Metz said. So egg producers went into lockdown, she said, developing intensive biosecurity measures to try to block the routes of transmission from wild birds or other farms.

Metz said the measures egg producers are taking now are extensive.

“They have invested hundreds of millions of dollars in improvements, everything from truck washing stations — which is washing every truck from the FedEx man to the feed truck — and everything in between: busing in workers so that there’s less foot traffic, laser light systems to prevent waterfowl from landing.”

Lateral spread, when the virus is transmitted from farm to farm, has dropped dramatically, down from 70% of cases in the last outbreak to just 15% as of April 2023, according to the USDA.

And yet, Metz said, “all the measures we’re doing are still getting beat by this virus.”

The Fight Over Vaccinating Birds

Perhaps the most contentious debate about bird flu in the poultry industry right now is whether to vaccinate flocks.

Given the mounting death toll for animals and the increasing risk to humans, there’s a growing push to vaccinate certain poultry against avian influenza, which countries like China, Egypt, and France are already doing.

In 2023, the World Organization for Animal Health urged nations to consider vaccination “as part of a broader disease prevention and control strategy.”

Swayne, the avian influenza expert and poultry veterinarian, works with WOAH and said most of his colleagues in the animal and public health world “see vaccination of poultry as a positive tool in controlling this panzootic in animals,” but also as a tool that reduces chances for human infection, and chances for additional mutations of the virus to become more human-adapted.

But vaccination could put poultry meat exporters (whose birds are genetically less susceptible to H5N1 than laying hens) at risk of losing billions of dollars in international trade deals. That’s because of concerns that vaccination, which lowers the severity of disease in poultry, could mask infections and bring the virus across borders, according to John Clifford, a former chief veterinary officer of the USDA. Clifford is currently an adviser to the USA Poultry and Egg Export Council.

“If we vaccinate, we not only lose $6 billion potentially in exports a year,” Clifford said. “If they shut us off, that product comes back on the U.S. market. Our economists looked at this and said we would lose $18 billion domestically.”

Clifford added that would also mean the loss of “over 200,000 agricultural jobs.”

Even if those trade rules changed to allow meat and eggs to be harvested from vaccinated birds, logistical hurdles remain.

“Vaccination possibly could be on the horizon in the future, but it’s not going to be tomorrow or the next day, next year, or whatever,” Clifford said.

Considering just one obstacle: No current HPAI vaccine is a perfect match for the current strain, according to the USDA. But if the virus evolves to be able to transmit efficiently from human to human, he said, “that would be a game changer for everybody, which would probably force vaccination.”

Last month, the USDA announced it would “pursue a stockpile that matches current outbreak strains” in poultry.

“While deploying a vaccine for poultry would be difficult in practice and may have trade implications, in addition to uncertainty about its effectiveness, USDA has continued to support research and development in avian vaccines,” the agency said.

At this point, Metz argued, the industry can’t afford not to try vaccination, which has helped eradicate diseases in poultry before.

“We’re desperate, and we need every possible tool,” she said. “And right now, we’re fighting this virus with at least one, if not two, arms tied behind our back. And the vaccine can be a huge hammer in our toolbox.”

But unless the federal government acts, that tool won’t be used.

Industry concerns aside, infectious diseases physician Bhadelia said there’s an urgent need to focus on reducing the risk to humans of getting infected in the first place. And that means reducing “chances of infections in animals that are around humans, which include cows and chickens. Which is why I think vaccination to me sounds like a great plan.”

The lesson “that we keep learning every single time is that if we’d acted earlier, it would have been a smaller problem,” she said.

This article is from a partnership that includes Michigan Public, NPR, and KFF Health News.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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It’s working, even in an unlikely place: Indiana, which has had some of the nation’s highest hospital prices. Over the past few years, Indiana lawmakers have passed bills pushed by Sachdev that target complex and sometimes wonky health policy issues.

Sachdev, 55, trained as a pharmacist and for years led a coalition of Indiana businesses. In her quest to shake up the status quo, she sparked the creation of a national report on hospital pricing. She won over powerful Republican donor Al Hubbard, who has championed her proposals. She’s convened health care experts from across the country to tackle cost transparency. In turn, all this has elevated her profile in Indiana and beyond.

Now, this disruptor has ascended to a position of power in the Hoosier State. Indiana’s new Republican governor, Mike Braun, appointed her to a newly created Cabinet position overseeing the state’s health care agencies.

Republican leaders in Indiana have been receptive to Sachdev’s work, persuaded by her argument that the free-market approach of limited government intervention, long favored by the GOP, doesn’t work with health care.

“I believe in a free market, too,” she said.

But health care isn’t like a grocery store where shoppers have lots of options in the cereal aisle and can see the prices. Too often, Indiana patients are left with few choices and no price transparency, Sachdev said. That messaging has resonated with Indiana Republicans, she said, because they see it in their own communities.

A decade ago, when she began representing frustrated employers as chief executive of the Employers’ Forum of Indiana, she asked the businesses within that coalition to identify their biggest pain point: “They unanimously said health care affordability.”

Sachdev had spent years training as a pharmacist, pursuing a career in health care like her father. He was a researcher at the University of Oklahoma who made advances in decoding cystic fibrosis, a life-threatening genetic disorder that damages the lungs.

In her own career, Sachdev said, she has always sought answers to seemingly simple questions, driven by data and her belief that sound policy stems from rigorous analysis of the available evidence. So to examine the employers’ concerns, she sought to find out how health care prices in Indiana compared with those in other states. No such data existed at the time.

She cold-called Chapin White, then an economist at the Rand Corp. research organization, and persuaded him to help her find the answer. After some initial studies of Indiana, Rand published a study in 2019 that analyzed the prices paid by private health plans to more than 1,500 hospitals across the nation.

The results shocked her: Indiana landed at the top of the list, with the highest hospital prices among the 25 states initially studied. Sachdev was incredulous that her adopted state had earned such a dubious distinction. “We’re not New York City,” she said.

The results emboldened her — and state lawmakers — to take action. “When we’re highlighted like that, it certainly requires our attention,” said Chris Garten, the majority floor leader in the Indiana Senate and a former chair of the General Assembly’s oversight task force on health care costs.

The push for transparency also gained momentum nationally, leading President Donald Trump to issue an executive order in his first term that required hospitals to publicly disclose prices.

“Gloria was the catalyst for getting this started,” said Brown University economist Christopher Whaley, one of the other authors of the price transparency report while at Rand.

Consolidation has fueled higher prices in medical care. But Indiana is an outlier in how it chose to respond to consolidation, at least among red states, said Katie Gudiksen, executive editor of The Source on Healthcare Price and Competition, an online resource from the University of California Law-San Francisco.

Over the past few years, Indiana legislators have enacted laws to combat consolidation, banning large hospital systems from tacking on extra fees, restricting employers from imposing non-compete contracts on primary care physicians, and requiring health care companies to report pending mergers to the state’s attorney general.

Sachdev called the move to ban extra fees in some hospitals a major victory. Across the U.S., hospitals may add an extra charge to a bill, known as a facility fee, even when the visit happens outside the hospital at an affiliated doctor’s office. Indiana’s law not only lowers prices, she said, but also removes an incentive for hospitals to buy up physician practices for the purpose of tacking on a facility fee.

“All of our efforts are really in this space of increasing competition,” she said.

Last spring, Sachdev drew national medical pricing experts to Indianapolis for a conference on health care transparency. Celebrity entrepreneur Mark Cuban, a critic of high prices in the industry, was a keynote speaker.

At the conference, the latest installment of the Rand report was unveiled. Indiana had fallen from the top spot to the state with the ninth-highest prices.

Last fall, however, a hospital merger threatened to undo some of Sachdev’s wins in Indiana. Rival hospitals in Terre Haute were seeking to merge. The deal would have left the city and those in the surrounding rural areas with a hospital monopoly, and such consolidations elsewhere have been shown to raise medical prices.

Under the state’s Certificate of Public Advantage law, the deal would have been shielded from federal anti-monopoly restrictions. Two dozen states have had COPA laws on their books at some point, despite warnings from the Federal Trade Commission that such hospital mergers can become difficult to control and may decrease the overall quality of care.

The deal faced immense pushback. Doctors, health economists, and the FTC called on the Indiana Department of Health to deny Union Health’s application to merge with HCA Healthcare-owned Terre Haute Regional Hospital.

In an opinion piece in The Indianapolis Star, Sachdev urged regulators to consider the harm that came after similar mergers elsewhere.

“The evidence shows how deals, like the one in Terre Haute, can crush communities,” Sachdev wrote with Zack Cooper, a health economist and associate professor at Yale University.

In November, just days before the state was due to rule on the deal, Union Health withdrew its merger application.

“I was thrilled,” Sachdev said. “The writing was on the wall that it would have been denied.”

Now, Indiana state Sen. Ed Charbonneau, a Republican and chair of the Senate health committee, has introduced a bill to repeal the state’s COPA law. Indiana would become the sixth state to roll back such a law.

Describing Sachdev as aggressive and analytical, Charbonneau said she regularly shares her thoughts about the COPA law and other health care issues. “Gloria is not at all reluctant to come and talk to me or call me or text me,” he said.

When Braun appointed her as secretary of health and family services, he said in a statement that her “proven track record of transforming healthcare delivery and costs makes her the ideal choice to lead Indiana’s health initiatives.”

Braun’s health care agenda targets prices that “are robbing Hoosiers’ paychecks,” according to his campaign platform, which adds, “Without intervention, the strain will only get worse.”

In his second week as governor, Braun signed multiple executive orders seeking to increase transparency, directing state agencies to review the practices of pharmacy benefit managers and evaluate pricing. He also has said he plans to build on the legislature’s “ambitious work” of tackling affordability. With Republicans in control of the legislature, Braun is unlikely to encounter political gridlock, a reality that excites Sachdev.

“I’ve been working from the ground up, and we’ve made progress,” she said. “If I’m helping Gov. Braun from the top down, we can make faster, greater progress.”

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“It put a smile on my face to see him so happy,” Schachter said.

Alex would have turned 21 that day, six years after he and 16 other children and staff at Marjory Stoneman Douglas High School in Parkland, Florida, were shot and killed by a former student in 2018. In the years before the shooting, that former student had displayed concerning behavior that elicited dozens of calls to 911 and at least two tips to the FBI.

“Alex should still be here today. It’s not fair,” Schachter said.

After two weeks of grieving Alex’s death, Schachter, propelled by anger and pain, began advocating for school safety. In part, he wanted to ensure his three other children would never be harmed in the same way. He joined the newly formed Marjory Stoneman Douglas High School Public Safety Commission to improve the safety and security of Florida’s students. And he launched a nonprofit bearing Alex’s name, which advocates for school safety.

Doing that work, he learned about threat assessment teams, groups of law enforcement and school officials who try to identify potentially dangerous or distressed kids, intervene, and prevent the next school shooting. Florida is one of about 18 states that require schools to have threat assessment and intervention teams; a national survey estimates 85% of public schools have a team assigned to the task.

The teams, whose mission and operational strategies often are based on research from the FBI and the Secret Service’s National Threat Assessment Center, or NTAC, have become more common as the number of school shootings has increased. Despite their prevalence for almost 25 years, some of the teams have developed systemic problems that put them at risk of unfairly labeling and vilifying children.

States vary widely in their requirements of threat assessment teams and there isn’t a nationwide archetype. Few school districts and states collect data about the teams, little is known about their operations, and research on their effectiveness at thwarting mass shootings and other threats is limited. But a 2021 analysis by the NTAC of 67 plots against K-12 schools found that people “contemplating violence often exhibit observable behaviors, and when community members report these behaviors, the next tragedy can be averted.”

“School shooters have a long thought process. They don’t just snap. They have concerning behavior over time. If we can identify them early, we can intervene,” said Karie Gibson, chief of the FBI’s Behavioral Analysis Unit.

Yet, Dewey Cornell, a forensic clinical psychologist who in 2001 developed one of the first sets of guidelines for school threat assessment teams, said there have been problems. In many cases, he said, threats have been deemed not serious “but parents and teachers are so alarmed that it is difficult to assuage their fears. The school community gets in an uproar and the school administrators feel pressured to expel the student.”

And in other cases, a school doesn’t do a threat assessment and assumes a student is dangerous when somebody else reports them as a threat, and they may take a zero tolerance approach and remove them from the school, said Cornell, the Virgil S. Ward professor of education at the University of Virginia.

A task force convened by the American Psychological Association found little evidence that zero tolerance policies have improved school climate or school safety and said they may create negative mental health outcomes for students. The task force cited examples of students who were expelled for incidents or school rule violations as minor as having a knife in their lunch box for cutting an apple.

Marisa Randazzo, a research psychologist and the director of threat assessment for Georgetown University, said she has also seen “hyperreactions,” especially among school communities that have experienced a mass killing.

“It’s understandable. People who have been close to an event like this are on higher alert than other people,” said Randazzo, who previously worked for the Secret Service and co-founded Sigma Threat Management Associates.

Threat assessments are supposed to be a graduated process calibrated to the seriousness of a problem, since the majority of student threats are not credible and can be resolved through supportive interventions, according to research from the Secret Service.

Stephanie Crawford-Goetz, a school psychologist and the director of mental health for student support services in the Douglas County School District in Colorado, where a shooting occurred at a charter school in 2019, said her district’s threat assessment process emphasizes a proactive, rehabilitative approach to managing potential threats, as the NTAC suggests.

Crawford-Goetz said her district interviews students before convening the team to assess whether a threat is a misguided expression of anger or frustration and if the student has a plan and means to carry out violence.

Students whose threats are deemed transient receive support, such as help with coping skills, and they may meet with a mental health provider.

If the threat is credible, a student may be temporarily removed from the classroom or school.

Randazzo said the vast majority of kids who make threats are suicidal or despondent: “The process is designed primarily to figure out if someone is in crisis and how we can help. It is not designed to be punitive.”

Crawford-Goetz tells parents about her district’s threat assessment team at the beginning of the school year. Some districts report keeping their teams a secret from parents, which is not how they were designed to operate, said Lina Alathari, chief of the NTAC. Her team encourages schools to educate the whole community about the threat assessment process.

Some advocacy groups contend that threat assessment teams have perpetuated inequities. There has also been widespread concern that children with disabilities can easily get swept into a threat assessment.

In a 2022 report, the National Disability Rights Network, a nonprofit based in Washington, D.C., said some threat assessment teams have become “judge, jury, and executioner,” going beyond assessing risk of serious, imminent harm to determining guilt and punishment.

Expanding their scope allows threat assessment teams to get around civil rights protections, the report says.

Cornell disputed the disability rights group’s conclusion. “This has not been corroborated by scientific studies and is speculative,” he said.

Some states, such as Florida, mandate that threat assessment teams determine whether a student’s disability played a role in their behavior and recommend they include special education teachers and other professionals in their evaluation.

In Texas, which has mandated threat assessment teams, a third of students subjected to threat assessments in the Dallas Independent School District receive special education services.

Yet, the district doesn’t have a special education staff representative on its threat assessment team, according to a March 2023 report by Texas Appleseed, a nonprofit public interest justice center.

Many school districts are developing their own models in the absence of national standards for threat assessments.

Florida revamped its threat assessment system in January 2024 to improve response times, provide consistent data collection, and build in more checks and balances and oversight, said Pinellas County Sheriff Bob Gualtieri, who is also chair of the Marjory Stoneman Douglas High School Public Safety Commission.

The new model requires the teams to work quickly and file uniform, electronic summary reports of threat assessment findings. Those results follow students throughout their school years.

The adjustments are intended to eliminate the risk of not knowing about a student’s past troubling behavior if they change schools, as occurred with the Parkland shooter and a student who shot and killed classmates at a high school near Winder, Georgia, in September, said Gualtieri.

“As parents, you never stop worrying about your kids,” Schachter said.

Virginia mandates that all public schools and higher education institutions, including colleges, have threat assessment teams. In Florida, where one of Schachter’s daughters attends college, threat assessment teams are mandated in all public schools, including charter schools.

“There’s more work to be done,” Schachter said.

Cheryl Platzman Weinstock’s reporting is supported by a grant from the National Institute for Health Care Management Foundation.

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Trump’s order, titled “Protecting Children From Chemical and Surgical Mutilation,” is certain to face legal challenges and would require congressional or regulatory actions to be fully enacted. But transgender people and their advocates are concerned it will nonetheless discourage prescriptions and medical procedures they consider to be lifesaving in some cases, while complicating insurance coverage for gender-affirming care.

“It can’t be understated how harmful this executive order is, even though it doesn’t do anything on its own,” said Andrew Ortiz, a senior policy attorney at the Transgender Law Center. “It shows where the administration wants to go, where it wants the agencies to put their efforts and energies.”

The order is one of several Trump has issued, less than two weeks since taking office, that target the trans community. He has directed his administration to recognize only the male and female sex — and to abandon the term “gender” altogether. He ordered the State Department to issue passports identifying Americans only by their genders assigned at birth. He has encouraged the Justice Department to prosecute teachers and other school officials who help trans children transition, including by using their preferred names. And he signed an order that’s expected to lead to transgender people being banned from military service.

“We’re terrified. We cry every day. Hurting my family and my kid is winning politics for Republicans right now,” said the parent of a transgender child who lives in Missouri and asked not to be identified for fear of being targeted. “Every bone in my body is telling me I can’t keep my child safe from my government anymore, I can’t keep my family safe.”

About 300,000 American children ages 13-17 identify as transgender, according to the Williams Institute at the UCLA School of Law, which researches sexual orientation and gender identity law and public policy. But the number who seek gender-affirming care is believed to be far fewer. An examination by Reuters and Komodo Health of about 330 million health insurance claims filed from 2017 to 2021 found that fewer than 15,000 patients ages 6 to 17 with a diagnosis of gender dysphoria had received gender-affirming hormone therapy and fewer than 5,000 had started puberty-blocking medications — though the annual number of such patients more than doubled over the five-year span.

Trump’s order seeking to disrupt insurance coverage for young people, the Williams Institute said in a brief, “will likely at least limit the availability of gender-affirming care or make it more difficult to access in the short term and could increase risk for both providers and recipients of the care.”

Much of what the order calls for would require rule changes or other federal guidance, which can take weeks to months. Though it is mostly directed toward government health insurance programs, the order could have private-sector implications, too, and is likely to face litigation from states or advocacy organizations.

Specifically, the directive intends to limit insurance coverage for hormonal or surgical treatments that help young people transition.

It directs the secretary of the Department of Health and Human Services to “take all appropriate steps” to end insurance coverage of such treatments. It specifically names several government programs such as Tricare, which serves the military and its dependents; Medicare and Medicaid; federal and postal health benefit programs; and the Foreign Service Benefit Plan.

“The aim here is clearly targeted at federally funded plans, such as Medicare and Medicaid, but there’s a lack of clarity as to whether it would impact other plans, such as exchange plans, where essential health benefits are required,” said Lindsey Dawson, director of LGBTQ Health Policy at KFF, the health policy research, polling, and news organization that includes KFF Health News.

State Medicaid programs vary widely in their rules around transgender care, with a variety of limits or restrictions on what types of care can be covered for minors in just over half the states, according to a map provided by the Colorado-based Movement Advancement Project, a nonprofit think tank.

While little is likely to happen immediately from the order — one of more than 100 issued by the president since his inauguration last week — it could, nonetheless, have a chilling effect on medical professionals.

The order directs the Department of Justice to work with Congress to promote legislation that would allow children and parents a “private right of action” — the ability to file a lawsuit — against medical professionals who provide transgender care.

And the Justice Department was also directed to consider the application of existing laws to those who provide or promote access to gender care.

In addition, one section of the order directs agencies to “take appropriate steps to ensure that institutions receiving Federal research or education grants end the chemical and surgical mutilation of children,” a move that could affect hospitals or medical schools.

Julian Polaris, a partner at the consulting firm Manatt, said the order “displays the federal government’s willingness to use federal programs to restrict access to disfavored services even to providers and patients outside those federal programs.”

The move drew immediate criticism from groups supporting LBGTQ+ people’s rights.

“It is unconscionable that less than 24 hours after trying to take away Head Start programs and school meals for kids, President Trump issued an order demonizing transgender youth and spreading dangerous lies about gender-affirming care,” Alexis McGill Johnson, president and CEO of Planned Parenthood Federation of America, wrote in a press release.

Because it defines “youths” as those under age 19, the order would apply the directives to medical treatments provided to 18-year-olds, who otherwise are considered adults in making legal choices, voting, or serving in the military.

“There’s also just a problem with not seeing young people as capable in making decisions around their health and their futures, and so blurring that line and trying to move it up and taking more control over more people is obviously concerning,” Ortiz said. “But having the line hard at 18 also doesn’t make it any better.”

Ortiz noted that the order contains misinformation about medical care for young people who are transitioning and targets a small subset of U.S. residents: transgender youths in families that can access and afford gender-affirming care.

“That should be concerning to everybody,” he said, “that they are pulling out populations to target, to say that, ‘We don’t think that you deserve access to best-practice medical care.’”

Trump’s order explained that the action was necessary because such medical treatment could cause young people to regret the move later, once they “grasp the horrifying tragedy that they will never be able to conceive children of their own or nurture their children through breastfeeding.”

KFF Health News Midwest correspondent Bram Sable-Smith contributed to this report.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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One of the studies would reveal whether veterinarians who treat cattle have been unknowingly infected by the bird flu virus. Another report documents cases in which people carrying the virus might have infected their pet cats.

The studies were slated to appear in the official journal of the Centers for Disease Control and Prevention, the Morbidity and Mortality Weekly Report. The distinguished journal has been published without interruption since 1952.

Its scientific reports have been swept up in an “immediate pause” on communications by federal health agencies ordered by Dorothy Fink, the acting secretary of the Department of Health and Human Services. Fink’s memo covers “any document intended for publication,” she wrote, “until it has been reviewed and approved by a presidential appointee.” It was sent on President Donald Trump’s first full day in office.

That’s concerning, former CDC officials said, because a firewall has long existed between the agency’s scientific reports and political appointees.

“MMWR is the voice of science,” said Tom Frieden, a former CDC director and the CEO of the nonprofit organization Resolve to Save Lives.

“This idea that science cannot continue until there’s a political lens over it is unprecedented,” said Anne Schuchat, a former principal deputy director at the CDC. “I hope it’s going to be very short-lived, but if it’s not short-lived, it’s censorship.”

White House officials meddled with scientific studies on covid-19 during the first Trump administration, according to interviews and emails collected in a 2022 report from congressional investigators. Still, the MMWR came out as scheduled.

“What’s happening now is quite different than what we experienced in covid, because there wasn’t a stop in the MMWR and other scientific manuscripts,” Schuchat said.

Neither the White House nor HHS officials responded to requests for comment. CDC spokesperson Melissa Dibble said, “This is a short pause to allow the new team to set up a process for review and prioritization.”

News of the interruption hit suddenly last week, just as Fred Gingrich, executive director of the American Association of Bovine Practitioners, a group for veterinarians specializing in cattle medicine, was preparing to hold a webinar with members. He planned to disclose the results of a study he helped lead, slated for publication in the MMWR later that week. Back in September, about 150 members had answered questions and donated blood for the study. Researchers at the CDC analyzed the samples for antibodies against the bird flu virus, to learn whether the veterinarians had been unknowingly infected earlier last year.

Although it would be too late to treat prior cases, the study promised to help scientists understand how the virus spreads from cows to people, what symptoms it causes, and how to prevent infection. “Our members were very excited to hear the results,” Gingrich said.

Like farmworkers, livestock veterinarians are at risk of bird flu infections. The study results could help protect them. And having fewer infections would lessen the chance of the H5N1 bird flu virus evolving within a person to spread efficiently between people — the gateway to a bird flu pandemic.

At least 67 people have tested positive for the bird flu in the U.S., with the majority getting the virus from cows or poultry. But studies and reporting suggest many cases have gone undetected, because testing has been patchy.

Just before the webinar, Gingrich said, the CDC informed him that because of an HHS order, the agency was unable to publish the report last week or communicate its findings. “We had to cancel,” he said.

Another bird flu study slated to be published in the MMWR last week concerns the possibility that people working in Michigan’s dairy industry infected their pet cats. These cases were partly revealed last year in emails obtained by KFF Health News. In one email from July 22, an epidemiologist pushed to publish the group’s investigation to “inform others about the potential for indirect transmission to companion animals.”

Jennifer Morse, medical director at the Mid-Michigan District Health Department and a scientist on the pending study, said she got a note from a colleague last week saying that “there are delays in our publication — outside of our control.”

A person close to the CDC, speaking on the condition of anonymity because of concerns about reprisal, expected the MMWR to be on hold at least until Feb. 6. The journal typically posts on Thursdays, and the HHS memo says the pause will last through Feb. 1.

“It’s startling,” Frieden said. He added that it would become dangerous if the reports aren’t restored. “It would be the equivalent of finding out that your local fire department has been told not to sound any fire alarms,” he said.

In addition to publishing studies, the MMWR keeps the country updated on outbreaks, poisonings, and maternal mortality, and provides surveillance data on cancer, heart disease, HIV, and other maladies. Delaying or manipulating the reports could harm Americans by stunting the ability of the U.S. government to detect and curb health threats, Frieden said.

The freeze is also a reminder of how the first Trump administration interfered with the CDC’s reports on covid, revealed in emails detailed in 2022 by congressional investigators with the House Select Subcommittee on the Coronavirus Crisis. That investigation found that political appointees at HHS altered or delayed the release of five reports and attempted to control several others in 2020.

In one instance, Paul Alexander, then a scientific adviser to HHS, criticized a July 2020 report on a coronavirus outbreak at a Georgia summer camp in an email to MMWR editors, which was disclosed in the congressional investigation. “It just sends the wrong message as written and actually reads as if to send a message of NOT to re-open,” he wrote. Although the report’s data remained the same, the CDC removed remarks on the implications of the findings for schools.

Later that year, Alexander sent an email to then-HHS spokesperson Michael Caputo citing this and another example of his sway over the reports: “Small victory but a victory nonetheless and yippee!!!”

Schuchat, who was at the CDC at the time, said she had never experienced such attempts to spin or influence the agency’s scientific reports in more than three decades with the agency. She hopes it won’t happen again. “The MMWR cannot become a political instrument,” she said.

Gingrich remains hopeful that the veterinary study will come out soon. “We’re an apolitical organization,” he said. “Maintaining open lines of communication and continuing research with our federal partners is critical as we fight this outbreak.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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