“I will not go to the emergency room” — emphasis on not — were his first words after passing out, having a seizure, or regurgitating the protein smoothies I made to pass his narrowed esophagus. He said it again and again, even as fluid built up in his lungs, rendering him short of breath and prone to agonizing coughing spells. He had been a big, athletic guy, but now, in the ugly process of dying, he was looking gaunt. Ours was a precarious existence, but I understood his adamant rejection of the emergency department. Most prior visits had morphed into extended trips into a terrifying medical underworld — to a purgatory known as emergency department boarding.

I managed to keep Andrej at home while we planned for hospice, until one dreadful night at 2 a.m., when I ran out of hacks. We got into an ambulance and together headed to the hospital.

* * *

We had already learned the hard way that if you need admission to the hospital, you can remain in the emergency department — in the hallway or a curtained bay on a hard stretcher or in a makeshift holding area — for more than 24 hours, even for days, while waiting for a real hospital bed. In this limbo state, you’re technically admitted to the hospital, but still located in the physical domain of the ER. And the rules governing acceptable care and safety measures become much less clear.

In the summer of 2024, still being treated to keep his cancer at bay, Andrej had suddenly become somewhat delirious, requiring hospital admission to rule out the possibility of infection or, worse, of the cancer having spread to his brain. After we went to an emergency department near our home, in New York City, he lay trapped on a hard stretcher, with its rails up, for more than 36 hours, amid the alarms and calls for the code team, without any clues of whether it was day or night, and with access only to the few toilets shared by the dozens of patients and visitors in the emergency room. None of this helped his mental state. By the end of Day 2, he knew me — kind of — but had become convinced that the doctors were “the enemy” and that I was their paid accomplice.

After I pressed to move him to a bed “upstairs” — I meant to an inpatient ward — he was transported to a bed five floors higher. I realized too late that this was an “ED overflow area,” according to the paper sign attached to the entrance’s swinging door. A plaque in the hall identified it as a former labor and delivery floor. It had been kitted out with some of the trappings of an actual ward, such as real beds and bathrooms, but not the most important one: adequate personnel.

The space was by turns eerily quiet and wildly cacophonous. Although patients there were undergoing intimate, embarrassing procedures, rooms were gender-neutral. That first night, Andrej’s roommates were a man in a coma and an elderly French woman in a diaper and boots (no pants), who marched around her bed singing like a chanteuse. In the morning, I pestered a harried nurse and got Andrej moved to a quieter room with three beds, where two people died in three days.

The overworked staff did the best they could, but that was far from good care. My husband — who needed protein and calories but could consume only soft foods — was served chicken cutlets. When I noted to one nurse that Andrej’s soiled sheets hadn’t been changed for several days, she directed me to a linen cart so I could change them myself.

* * *

That first time, one of several extended ER stays Andrej made as a boarder, I thought perhaps we had just hit a busy time at a busy hospital. When I worked as an emergency medicine doctor a few decades ago, the ED was mostly empty at the beginning of my 7 a.m. shift. A few patients might be lingering from the day before: alcoholics who would sober up and leave, patients with a severe burn or a bad case of pneumonia who were waiting for a bed in intensive care.

In the decades since, EDs have doubled or even tripled in size. Even so, patients are piling up. When I started asking around, I quickly discovered ED boarding has become commonplace in the past five or so years and is getting worse, more or less omnipresent in hospitals. “Everyone knows about this problem, and no one cares enough to do anything about it,” Adrian Haimovich, an ED doctor at Boston’s Beth Israel Deaconess Medical Center who studies ED boarding, told me. “It’s barbaric.”

Measuring the problem has been challenging because data on ED boarding time is limited. Only this past November did the Centers for Medicare & Medicaid Services finalize a rule that would require hospitals to collect data on ED boarding times. Using what other data he could find, Haimovich has shown that boarding for more than 24 hours has increased dramatically for people 65 and older since the pandemic.

Once they enter ED boarding, patients exist in a gray zone. There has been a national push to establish “safe staffing” in EDs. Even with that, if an ED boarder has a medical complaint that needs quick attention, it’s easy for them to fall through the cracks, Haimovich said: In some hospitals, an admitting team of doctors from upstairs is responsible for the boarders stuck in the ED (but not the associated floor nurses); in others, overstretched ED medical staff must take full responsibility to care for boarders until a bed opens — and that in addition to seeing new patients. Some EDs now routinely hold more boarders — many of them quite ill — than patients being actively evaluated.

Doctors and nurses have complained bitterly about the situation, which forces them to provide inadequate care. Gabe Kelen, the director of emergency medicine at Johns Hopkins University, told me it’s creating a for emergency department staff. But doctors and department heads such as Kelen are not in control of admissions. Generally, a hospital’s administration parcels out inpatient beds, and emergency department boarding is in many ways a result of today’s business models and pressures.

* * *

When I worked as a doctor, if an ED was overwhelmed beyond capacity, the attending (that was me) typically called in to ambulance dispatch to request “diversion” — ambulances should take patients to another hospital. If a hospital got too full, the admitting office canceled elective admissions. Today, hospitals run like airlines and intentionally overbook, Kelen said. They also have fewer beds than they did a few years ago — in part because nurse (and executive) salaries have risen since the pandemic. An empty, staffed bed is a money loser, so the institution has an incentive to keep beds full and make new patients wait.

“The problem isn’t inefficiency — it’s the way health care finance is structured,” Kelen said. “Hospitals typically run on thin margins. Elective admissions are prioritized because they tend to be for lucrative procedures like heart catheterizations and joint replacements.”

Admitting patients through the emergency room has business advantages, too, even if it means they wait for a bed. The evaluation generates charges that typically run many thousands of dollars; once admitted, my husband was still billed the inpatient rate even for a stretcher in the hall. Old, sick, and dying patients are more likely to linger there in part because, after they’re in a real bed, they may take up that spot for days or weeks at a time while waiting for a bed in rehab or hospice, requiring nursing time but not the types of interventions that generate revenue.

Hospitals have tried band-aid fixes, such as bed-tracking software and discharge lounges where patients can wait for paperwork or transport home. Many do hire more doctors and nurses and orderlies in the ER to confront the overflow. But “long ED wait times and boarding have root causes that extend far beyond EDs and hospitals themselves,” Chris DeRienzo, the chief physician executive at the American Hospital Association, told me in an email. He listed the high cost of opening beds and the shortage of rehabilitation facilities, and emphasized the precarious financial situation of many hospitals.

But while Andrej waited in the overflow area, we were not thinking of any larger picture: He was sick, desperate, and still waiting for care. He lingered in boarding for four days before he got a bed. Each time he had to return to the ED, each time he faced a painful wait, he hardened his resolve to never go back.

* * *

Thunk. Crash. “Elisabeth, help!” Those were the sounds that woke me at 2 a.m.

I had fallen asleep on our bed, next to Andrej, his head raised with a foam wedge to ease his breathing and make sure food would not come up. Before I dozed off, I listened to his breathing — 30 times a minute, two times faster than normal — a sign he was struggling to get sufficient oxygen. And that racking cough. This was not good.

Now his bruised body was twisted, lying on the floor with his head against the bed frame. He’d attempted to use his walker to go to the bathroom. He was complaining of chest pain, coughing and short of breath. But he managed to get out those words: “I will not go to the ER.”

I knelt by his side in tears, telling him that I loved him but that I could not do anything more right now at home. Carlos, our super, helped me get him into bed and called EMS. I promised Andrej (against hope) that, given his condition, he would surely be quickly assigned to a real room and bed.

What happened next was a blur. I have a vague memory of paramedics arriving, putting him on the stretcher, sliding him into the ambulance, giving him oxygen. I mechanically grabbed his “do not resuscitate” form from under the refrigerator magnet and buckled myself in beside him.

Then he was in the ED, which was thrumming with activity, under the fluorescent lights, with oxygen in his nose, wearing a hospital gown, and looking gray and sick. The staff asked what was, for them, the operative question about a guy with widespread cancer: “Does he have a DNR?” Andrej asked me what was, for him, the operative question: “Did you bring my shoes?” He already wanted to leave.

An X-ray showed possible pneumonia, more tumors, and a buildup of fluid in his lungs. A medical team that covers oncology patients wrote an admitting note — he was now a boarder, again — and then retreated upstairs. They started antibiotics and gave him something to help him sleep amid the alarms and shouting. He didn’t.

When I came back the next morning — and two mornings after that — I was alarmed to see him still there on a hard stretcher, his feet dangling off the end, exhausted and in pain. “When will he be admitted to a bed?” I implored. If some of the stuff in his lungs was infectious, maybe he could be treated and get home.

Likely soon and I hear your frustration — I came to detest those two phrases.

Neighboring patients came and went 24 hours a day. Some were pleasant; some were screaming in pain or just screaming mad. Pulmonary doctors came and, in this semipublic space, used a large needle to remove three liters of fluid from Andrej’s right lung cavity.

* * *

Near the end of the Biden administration, in response to a bipartisan congressional request, the Department of Health and Human Services convened a meeting on emergency department boarding. Its report, from HHS’ Agency for Healthcare Research and Quality, came out the same month that the Trump administration took office, not long before Andrej’s fall — the last night he spent at home.

“Emergency department (ED) boarding is a public health crisis in the United States,” the report concluded. “Patients who are sick enough to require inpatient care can wait in the ED for hours, days, or even weeks.”

“Boarding contributes to increased mortality, medical errors, prolonged hospital stays, and greater dissatisfaction with care,” the report said.

The meeting proposal called for the formation of an expert panel to recommend solutions. In theory, a panel could have weighed in on key questions: Should hospitals — some of which are rich institutions — get paid an inpatient rate for boarding in the ED? Should they have to report boarding times and face penalties for excess? Should they be required to open more real beds, and should requirements for licensing be lessened? How can the country create more rehabilitation beds?

But since then, the Trump administration has dramatically cut that HHS agency’s staffing, as well as its grant programs. (Congress is still pushing to fund the agency.) The expert panel never formed, let alone offered solutions. The Centers for Medicare & Medicaid Services this year did initiate that will include voluntary reporting of boarding times in 2027, becoming mandatory in 2028. Bad marks will eventually affect Medicare reimbursement.

In an emailed statement, the Joint Commission, which certifies the nation’s hospitals, called boarding a “serious public health crisis” and “one of the most incredibly complex challenges in healthcare.” Although the organization does indirectly look at hospitals’ “ED throughput” from charts, such data is not comprehensive. Little information exists, for instance, about how many people’s last days are spent on stretchers, in hospital limbo.

None of this knowledge would have helped my dying husband. So I did what I’d promised myself I’d never do: I called a doctor friend, who called the hospital’s VIP office.

Suddenly Andrej was whisked to a real hospital room, with a bed that he could adjust to keep his head elevated, a tray he could eat from, a morphine pump, a TV, a bathroom, and a nurse call button at his side. A room with extra chairs, so his stepkids and friends could visit with gifts and mementos one last time. A room where the caring staff placed a chaise longue, where I could sleep over. That way, when he woke scared and coughing and yelling for me, I was there to hold his hand, adjust the oxygen, and push the button for an extra dose of narcotic.

Until, six days after we got in the ambulance and three days after we’d moved to this room, he woke early one morning, agitated and coughing, calling out, “Elisabeth?” I was there. But then, in a blink, he wasn’t.

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But officials warned that all optional Medicaid services are still under review as the state health department looks for cuts to offset a shortfall driven by higher-than-expected Medicaid costs.

Jon Ebelt, a spokesperson with the Montana Department of Public Health and Human Services, said the agency is preparing a request to the federal government to add doula care to the state’s Medicaid program. It would cost the state about $118,000 in its first year to provide doula Medicaid reimbursements, according to .

His April 15 comments came three weeks after department officials told Ñî¹óåú´«Ã½Ò•îl Health News that the state budget deficit had put those plans on hold. Ebelt denied that a final decision had been made in March to scrap the doula Medicaid payments, which state lawmakers approved in a bill last year. The coverage is “now proceeding as planned,” he said.

“At the time of your initial inquiry, we were still in the process of analyzing the appropriation,” Ebelt said.

Federal health officials must approve any amendments to the state’s Medicaid program before payments can begin. reimburse doulas through Medicaid.

Doulas are trained, nonmedical workers who support people through pregnancy and after they give birth. The care they provide is in health complications, which has prompted more states to cover doula services in recent years.

Montana lawmakers who supported expanding Medicaid to cover doula care in 2025 cited scarce maternity services, especially in rural and Indigenous communities. But this year, the state has a Medicaid budget deficit of more than and is expecting a similar shortfall next year. Plus, federal policy changes slated to take effect later this year are expected to increase costs.

“ There’s a need and a desire for doula services, but a lot of people can’t afford it,” said Sheri Walker, a Helena-based doula and president of the . “So that means many of us have other jobs that we have to juggle.”

Walker is a part-time labor and delivery nurse outside of her doula work.

On March 25, health department spokesperson Holly Matkin said in an email to Ñî¹óåú´«Ã½Ò•îl Health News that the agency “will not be moving forward with the implementation of doula services in the Montana Medicaid benefit package at this time.” She had added that it was unclear whether state law gives the department the authority to authorize coverage during the budget shortfall.

State Sen. , a Democrat who sponsored last year’s bipartisan doula reimbursement bill, said she didn’t know about the department’s plans until she saw Ñî¹óåú´«Ã½Ò•îl Health News’ reporting. Neumann said she and groups that had backed the legislation began calling health officials, making the case for doula services as a low-cost way to provide critical care.

After about a week, Neumann said, state officials told her the agency was moving ahead with doula services after all.

“They were on the chopping block,” Neumann said. “This is a story of how important it is for all Montanans to pay attention and stay connected to what’s happening.”

Ebelt did not clarify what led the department to change its position. However, he warned that optional Medicaid services, such as doula services, may still be cut.

“All optional services, including this service, are being reviewed,” Ebelt said, referring to doula care. He did not respond to a follow-up query as to whether the department might still decide to postpone the program following federal approval.

are types of care that states choose to cover through their Medicaid programs but aren’t required by federal law. That can include covering eyeglasses, prescription drugs, and prosthetics, and more specialized care such as physical therapy, or inpatient psychiatric services for people under 21.

Those services may not sound optional, said , who studies Medicaid financing at KFF, a health information nonprofit that includes Ñî¹óåú´«Ã½Ò•îl Health News. But she said they’re one of the few avenues states have to make adjustments when budgets get tight.

Congressional Republicans’ One Big Beautiful Bill Act, the spending measure President Donald Trump signed into law last July, is expected to put more states in a budget crunch as its provisions start to take effect by the end of the year. The federal government has estimated that the law will reduce federal Medicaid spending by nearly $1 trillion over 10 years. The law also left states with a higher share of the costs to provide food assistance.

Williams said many states expanded services in recent years by boosting optional Medicaid benefits and provider pay.

“We could see them walk those back,” Williams said.

Montana’s financial problems preceded federal changes. Last year, state lawmakers cut some of the health department’s funding and underestimated Medicaid use. The state also overestimated what the federal government would pay toward Montana’s Medicaid costs.

Health officials must outline a plan to cut costs before the state’s 2027 budget year begins on July 1. Simultaneously, the agency is trying to hire more staffers to begin vetting whether Medicaid enrollees meet or are exempt from new work requirements that also go in place July 1. The new rules, mandated through long-delayed state legislation and the federal spending law, will have a three-month grace period.

Stephanie Morton, executive director of , said she’s grateful the state is back on track to pay for doula services through Medicaid. But she said she’s worried about potential health care cuts to come.

“We know that doulas are a critical piece of that infrastructure, but standing alone and losing other sources of care really isn’t optimal,” Morton said. “These are not robust systems as it stands.”

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McLeod, who lives near Charleston, South Carolina, is still paying off chemotherapy bills that followed her 2017 diagnosis. She also now faces an onslaught of out-of-pocket costs for follow-up monitoring and care, including regular visits to a pulmonologist and allergist.

McLeod, 45, said she had already spent $2,500 in the first two months of the year and owes an additional $1,300 from a January colonoscopy. That’s on top of the $895 monthly premium for a health insurance plan that covers her family of six.

Those costs have led McLeod to ration her other care. Despite feeling intense chest pain since February, for example, she is putting off a CT scan and a visit to a heart specialist.

“You’re forced to pick and choose as to where your priorities really need to be,” said McLeod, director of strategic programs and partnerships at the Cancer Hope Network, a nonprofit that supports cancer patients. Even in that role, she struggles to navigate the financial aftermath of surviving the disease.

The cost of postcancer care often “keeps us hostage,” she said.

McLeod is one of nearly 19 million U.S. cancer survivors, many of whom continue to need prescriptions, doctor visits, and procedures to monitor their condition and manage posttreatment side effects. Of more than 1,200 cancer patients and survivors , about 47% said they had carried medical debt, with nearly half having owed more than $5,000, according to the American Cancer Society Cancer Action Network.

Yet health policy researchers and patient advocates said the experiences of cancer survivors reveal the limits of the Trump administration’s proposals to lower premiums, which may not help patients who accumulate large medical bills year after year. The proposals center on increasing the availability of high-deductible health plans, which have lower monthly payments but require patients to pay thousands of dollars out-of-pocket before coverage kicks in.

In addition, the administration has supported allowing insurers more leeway to sell plans that are not compliant with the Affordable Care Act. Such plans could bar people who have preexisting health conditions, like a cancer diagnosis, and exclude that ACA plans are required to cover.

The administration did not answer a request for comment on how its proposals would affect cancer survivors. But its supporters say, in general, people would have more flexibility to personalize coverage and more options for plans with lower monthly fees.

Michael Cannon, director of health policy studies at the Cato Institute, a libertarian think tank, believes patients would have better control over spending, and the option to choose what kind of care gets covered, if health plans were exempted from the ACA’s regulations. A person could opt for a plan that includes cancer treatment but not maternity care, for example.

History proves insurance coverage is not that simple, especially for people with preexisting conditions, said Jennifer Hoque, an associate policy principal with the American Cancer Society Cancer Action Network. When health plans could “pick and choose” enrollees based on preexisting conditions prior to the ACA, people needing the costliest care often struggled to find coverage, she said.

“They’re not going to choose a cancer survivor,” Hoque said of health insurers.

That was the case for Veronika Panagiotou, who said private insurers refused her coverage back in September 2013 because she had a high body mass index. Two months later, as a 25-year-old uninsured graduate student, she was diagnosed with non-Hodgkin lymphoma. The hospital treated her, she recalled, “and sent me all the bills.”

In January 2014, Panagiotou was able to buy one of the first ACA plans that went into effect. It covered chemotherapy and immunotherapy treatment, imaging, medications, hospital stays, weekly blood draws, a blood transfusion, and emergency room visits.

Now Panagiotou, 37, is cancer-free and works as director of advocacy and programs at Cancer Nation, a nonprofit advocacy group. Even though she is covered through her employer, Panagiotou said treatment-related expenses weigh heavily on her life decisions.

“Every choice I make, I think about cancer,” she said.

Chris Bond, a spokesperson for AHIP, the main health insurance trade association, said its members are working to improve access to coverage. But that can be a challenge when doctors and drugmakers are hiking prices, he said. Health plans are trying to “shield Americans from the full impact of those rising costs,” Bond said.

The Lymphoma Research Foundation has seen a 10% increase in applications to its patient aid fund this year, CEO Meghan Gutierrez said. “This trajectory suggests that financial safety nets, when they exist, are straining,” she said.

Rising prices are affecting everyone, regardless of the kind of health insurance they have, if any, said Brian Blase, president of Paragon Health Institute, a Republican-aligned think tank. “The biggest challenge for cancer patients isn’t the type of coverage,” he said. “It’s the underlying cost of care.”

Blase pointed to President Donald Trump’s as potentially helpful to cancer survivors. The Medicare Drug Price Negotiation Program, established by the Inflation Reduction Act of 2022, required the Department of Health and Human Services to negotiate prices for certain high-cost drugs, to lower prices for the federal health insurance program for people ages 65 and older. Drugs for breast, prostate, and kidney cancers are already on that list, .

Yet Hoque fears efforts to weaken ACA protections and financial support for marketplace plans will give cancer survivors — who she said tend to “hang on to insurance for dear life” — fewer options, especially between jobs or during career changes.

Erin Jones, a 31-year-old food policy researcher living in Fort Collins, Colorado, who was diagnosed with Hodgkin lymphoma as a young adult, is now cancer-free but still sees two oncologists, visits a high-risk breast clinic, and gets a breast MRI annually. Jones gets health insurance through the university where she works, and said she recently deferred acceptance to a PhD program partly due to uncertainty over affordable coverage.

“I don’t have the freedom to do the things I want to do as easily,” she said, “because I am constantly worried about health insurance.”

Costs related to surviving cancer, including monitoring for recurrence and treatment of side effects, were expected to reach $246 billion by 2030, up from $183 billion in 2015, according to .

Advancements in both detecting and curing cancer have resulted in a higher percentage of people surviving five years or more after diagnosis, according to the American Cancer Society. The number of survivors is expected to grow to more than 22 million people by 2035, .

Despite these advancements, the cost of treatment can steal the spotlight, said Ezekiel Emanuel, a co-director of the Healthcare Transformation Institute at the University of Pennsylvania and a onetime health policy adviser to former President Barack Obama.

An oncologist, Emanuel said he had observed patients make the difficult decision to delay or skip postcancer care as a result.

“Even when we triumph,” he said, “we don’t seem to be able to have a celebration.”

Are you struggling to afford your health insurance? Have you decided to forgo coverage? Click here to contact Ñî¹óåú´«Ã½Ò•îl Health News and share your story.

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The lawsuit, settled on confidential terms last year, blamed not only the managers of City Creek Post-Acute and Assisted Living but also the building’s owner, a real estate investment trust, or REIT.

In the year Darby died, City Creek paid CareTrust REIT more than $1 million in rent, while the Sacramento, California, nursing home ran a deficit, court records show.

Federal tax rules ban REITs from running health care facilities, but CareTrust was not an absentee landlord either, according to internal records filed in the case. It chose the nursing home’s management company and required through the lease that the home keep at least 80% of beds occupied. CareTrust granularly tracked how well the home kept to its financial plan, down to the money spent monthly on nurses and food, the records said. And the documents showed that the real estate company kept tabs on government safety inspection findings and Medicare quality ratings.

Both CareTrust and the nursing home operator denied liability for Darby’s death. CareTrust officials said in court papers that it is not involved in day-to-day nursing home decisions or patient care, and that it monitors facilities to ensure nothing jeopardizes rent payments. In a written statement, CareTrust Corporate Counsel Joseph Layne told Ñî¹óåú´«Ã½Ò•îl Health News: “We are the property owners, not the operators.”

Landlords With Influence

Over the past decade, real estate investment trusts have bought thousands of buildings that house nursing homes, hospitals, assisted living facilities, and medical offices. A Ñî¹óåú´«Ã½Ò•îl Health News examination of court filings and corporate records shows that these landlords have more influence than the health care facilities publicly acknowledge.

The documents reveal REITs often select the management who oversee the operations and leave them in place even when they are aware of threadbare staffing, floundering governance, repeated safety violations, or other problems that hamper quality of care. A California jury in March awarded $92 million in punitive damages against a former REIT over the death of a 100-year-old resident with dementia who froze to death outside her assisted living facility.

“The REITs are in charge,” said Laraclay Parker, one of the lawyers who represent Darby’s daughter.

Absence of Oversight

Despite their ubiquity, REITs remain invisible to state and federal health regulators. Hospitals and nursing homes are not required to disclose rent payments or landlord identities in the annual reports they submit to Medicare.

Under President Donald Trump, the Centers for Medicare & Medicaid Services a Biden-era requirement that nursing homes . Catherine Howden, a CMS spokesperson, said in a statement that the agency does not regulate facilities based on their tax status or corporate form and instead focuses on the quality of the care they provide.

REITs now of the nation’s senior housing, which includes assisted living, memory care, and independent living, according to an industry analysis. REITs also hold investments in nursing homes. Publicly traded REITs that focus on health care are now worth nearly a quarter of a trillion dollars, according to Nareit, an industry association.

While one research study found REIT investments were associated with , another concluded that after being bought by REITs, nursing homes frequently with less skilled nurses and aides. A concluded that health inspection results were worse after REIT investment.

Researchers also found that investor-owned hospital chains that sold buildings to REITs were or go bankrupt, with Steward Health Care. Often, private equity investors kept the sale proceeds as profits while the hospitals were burdened with new rent costs. “There were no improvements in clinical outcomes,” said Thomas Tsai, an associate professor at the Harvard T.H. Chan School of Public Health.

REITs are required to distribute most of their income and don’t have to pay the 21% federal corporate income tax on it. There is a catch: A REIT that “directly or indirectly operates or manages” a health care facility for five years. Typically, a REIT leases the property to another company that runs the nursing home or assisted living facility and maintains its tax break. Nareit said health care REITs distributed more than $7 billion in dividends in 2024.

Michael Stroyeck, head of health care analysis at Green Street, a real estate research company, said “there’s definitely a symbiotic relationship” between REITs and facility managers because they have the same goals. He said he has seen REITs replace operators that are having difficulties or go bankrupt.

John Kane, a senior vice president at the American Health Care Association and the National Center for Assisted Living, an industry group that represents nursing homes, said in a statement: “Given government funding often falls short, REITs have been valuable partners in helping to invest in long term care without influencing daily operations.”

Low Staffing at a Chain

Strawberry Fields REIT, which like CareTrust trades on the New York Stock Exchange, owns or controls the buildings of 131 nursing home facilities. The nursing home operations inside 66 of those facilities are owned by Moishe Gubin, Strawberry Fields’ chief executive, and Michael Blisko, one of its directors, according to Strawberry Fields’ for last year.

Gubin and Blisko also jointly own , which manages their nursing homes; Blisko is Infinity’s CEO. On average, Infinity-affiliated nursing homes provided an hour and a quarter less nursing care per resident per day than the national average of four hours, a Ñî¹óåú´«Ã½Ò•îl Health News analysis of federal records found.

Infinity and several of its nursing homes have recently settled 30 death and injury lawsuits in Cook County, Illinois, totaling more than $4 million, said Margaret Battersby Black, a Chicago lawyer. A jury last year awarded $12 million in a lawsuit brought against Infinity and one of its Chicago nursing homes over the 2023 death of Shirley Adams. A retired candy factory worker, Adams died after developing infected bedsores at Lakeview Rehabilitation and Nursing Center, according to the lawsuit.

“She had wounds that no one could explain,” one of her adult children, Leslie Adams, testified at trial. Medicare its lowest quality rating, one star out of five.

Paul Connery, a lawyer for Adams’ family, said they are still trying to collect on the judgment against the nursing home and management company, which now totals $17 million with interest and attorney fees.

“If I get caught speeding and I went to court, they issue me a ticket and I’ve got a fine to pay,” Adams said in an interview. “How are they able to still continue to move on with business like nothing has happened?”

In a phone interview and an email, Gubin said Strawberry Fields, Infinity, and the nursing homes are all legally distinct and that he has not played an active role in Infinity in more than a decade. He said nursing homes get sued all the time but that the verdict against Lakeview is so large that it will force the home to declare bankruptcy or shut down.

“The whole thing is unfortunate,” Gubin said by phone. “For 15 years they were a perfectly good guardian” and “a well-run building,” he said. “You wouldn’t think it was fair to be judged on your worst day.”

Blisko and an Infinity lawyer did not respond to requests for comment.

Strawberry Fields, which owns 10 assisted living facilities and two long-term care hospitals in addition to the nursing homes, earned net income last year of from $155 million in rent, a 21% profit margin, securities filings show. Gubin said those weren’t excessive returns.

A $110 Million Verdict

Traditionally, REIT leases make the operating companies responsible for paying property taxes, insurance premiums, and maintenance costs. In 2008, Congress gave health care REITs a new option to make money: On top of collecting rents, they could set up subsidiaries and take profits directly from health care businesses. They still must have independent management overseeing care decisions. Many REITs have embraced the role even though the subsidiaries must pay corporate taxes and risk losing money if the businesses do poorly.

Colony Capital was a REIT that through layers of shell corporations owned both the building and the operation of Greenhaven Estates, a Sacramento assisted living and memory care facility. In 2018 Greenhaven paid Colony $1.4 million in rent, nearly a third of its $4.5 million in revenue that year, according to financial records filed in court.

Greenhaven also was on the verge of losing its license, according to a revocation notice filed in November 2018 by the California Department of Social Services. Greenhaven had racked up years of health violations, including from letting untrained workers administer medications, lacking enough employees to care for people with dementia, and neglecting a resident who smeared feces over his body, bed, floor, and bathroom, the notice said.

In February 2019, a few weeks after celebrating her 100th birthday, Mildred Hernandez, a resident with Alzheimer’s, wandered out of Greenhaven in the middle of the night. Her assisted living wing had no exit door alarms even though it housed several residents with dementia, court records showed. Berta Lepe, one of Greenhaven’s caregivers, found Hernandez under a bush, wearing only a shirt and underwear. The temperature was in the 30s.

“She was talking, but I couldn’t understand what she was saying,” Lepe testified at trial over a lawsuit from Hernandez’s family. Hernandez died of hypothermia a few hours later, according to her death certificate.

Frontier Management, the company that Colony had hired to manage Greenhaven, denied liability and settled the lawsuit on undisclosed terms.

Since the lawsuit, Colony has changed its name to DigitalBridge, which no longer owns Greenhaven and gave up its REIT status. At trial earlier this year, DigitalBridge said resident care was the responsibility of Frontier and that Colony “encouraged” Frontier to address problems. Richard Welch, a former Colony executive, testified that replacing management is disruptive. “I viewed it as a last resort,” he said.

In March, a jury awarded Hernandez’s family $110 million: $10 million in compensatory damages, $92 million in punitive damages against DigitalBridge, and $8 million in punitive damages against Formation Capital, an asset management company.

“REIT money is very detached from knowing about or caring about patient or resident outcomes, because it’s not in their business model,” Ed Dudensing, a lawyer for the family, said in an interview. “Their allegiance is to their investors.”

DigitalBridge has asked the judge to delay finalizing the judgment while its legal challenges to the lawsuit and the verdict are evaluated. A DigitalBridge attorney and a corporate spokesperson did not respond to requests for comment, a Formation attorney declined comment, and a Frontier attorney and a spokesperson did not respond to a request for comment.

‘Wet From Head to Toe’

When CareTrust bought City Creek Post-Acute and Assisted Living in 2019, the Sacramento nursing home where Pearlene Darby lived had a one-star Medicare rating and was losing money. CareTrust leased the building to a management company called Kalesta Healthcare Group based on the business plan Kalesta submitted.

While CareTrust was not the operator, it held periodic phone calls with Kalesta, which provided “a full update of what’s happening at the facility,” including changes in leadership, financial progress, and health inspection survey results, according to deposition testimony by Ryan Williams, a Kalesta co-founder.

According to a state inspection report, in 2020, the year Darby died, City Creek left a resident in soiled linens “wet from head to toe lying in bed” for more than eight hours. During a different visit, a health inspector cited the home after watching a nurse put a dirty diaper back onto a resident after caring for a wound. “It was just a small stool and it is far from where the wound is,” the nurse told the inspector, according to the report.

James Callister, CareTrust’s chief investment officer, said in his deposition that CareTrust officials “review results of regulatory surveys provided to us by the tenant. We review the five-star rating.” He said, “We evaluate results of care, but we do not evaluate types of care given or how or when, no.”

Darby had been living in City Creek since 2011 after a stroke left her in a wheelchair. She needed help getting in and out of bed. From September through November 2020, Darby lost 30 pounds, her family’s lawsuit alleged. During those months, employees dropped her three times as one worker rather than the required two operated the mechanical lift, the lawsuit said.

The suit alleged City Creek failed to reposition her every two hours in bed or her wheelchair, which is the clinical standard for people at risk of bedsores, and to promptly order devices to protect her skin.

In November, the nursing home sent Darby to the hospital. A blood test found bacteria had entered her bloodstream from her feces’ touching open skin wounds, according to the lawsuit. The hospital diagnosed her with sepsis. A surgeon said she needed an operation to redirect fecal waste from her intestines but concluded she wasn’t medically stable enough for surgery, the suit said.

Darby began receiving comfort care measures and was sent back to City Creek. She died two weeks later. In court filings, CareTrust and Kalesta denied the allegations.

In a phone interview, Williams, the Kalesta co-founder, said Darby’s death occurred during the most challenging point of the covid pandemic, when California rules required any nurses testing positive for the virus to be sent home and nurses were quitting out of fear for their health. “It was the most herculean of professional efforts to secure enough staff,” he said.

While expressing sympathy for Darby and her family, he said it was “unconscionable” that personal injury lawyers sued nursing homes over care failures during “the worst of times.”

In court, CareTrust petitioned Judge Richard Miadich to dismiss it from the lawsuit before trial. “This case does not concern a property condition,” CareTrust’s lawyers wrote. “CareTrust is simply a landlord.” But the judge ruled last year a jury should decide whether CareTrust “exercised actual control over City Creek.”

The case was settled out of court a few months later. All parties declined to reveal the settlement terms.

A 67% Profit

As recently as November 2023 — four years after its acquisition — City Creek earned one star from Medicare. It was cited for failing to have the minimum nursing home staffing required by California law during five of 24 randomly selected days in 2022, according to an inspection report. Williams said in the interview that Kalesta had increased spending on nursing over the course of its ownership, including boosting wages, but that it takes a year or two to turn around a troubled nursing home. He said the home’s star rating in 2023 was dragged down by its poor inspection history from before Kalesta took over.

City Creek’s rating has climbed in the past two years, and it now has the top overall rating of five, according to Medicare. Medicare rates City Creek’s current staffing levels as average. That’s better than most nursing homes in more than 200 buildings CareTrust bought before 2025, according to a Ñî¹óåú´«Ã½Ò•îl Health News analysis of federal data. On average, CareTrust nursing homes provided a half hour less nursing care per resident per day than the national average of four hours.

In its statement to Ñî¹óåú´«Ã½Ò•îl Health News, CareTrust’s counsel Layne said the REIT worked to “identify quality operators as tenants,” and that the homes the REIT rents out have more nurses and aides than the minimum required for nursing homes by their state governments. “The operators are licensed by state regulators and retain sole responsibility for operations,” the statement said.

CareTrust, which now owns more than 500 senior housing and nursing home buildings, reported net income last year of $320 million from in rents and other revenue — a 67% profit margin. By comparison, HCA Healthcare, one of the nation’s largest for-profit hospital and health care chains, for last year.

Lesley Ann Clement, one of Darby’s lawyers, said cases like hers show the nursing home industry is wrong to complain it lacks financial resources for more staffing.

“There’s plenty of money,” Clement said. “They’re just not spending it on patient care.”

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The Office of Personnel Management 65 insurance companies to provide monthly reports with detailed medical and pharmaceutical claims data of more than 8 million people enrolled in federal health plans, Ñî¹óåú´«Ã½Ò•îl Health News reported earlier this month. The request, which could dramatically expand the personally identifiable medical information OPM can access, alarmed health ethicists, insurance company executives, and privacy advocates.

Now, OPM Director Scott Kupor has two letters on his desk — one from 16 U.S. senators and another led by Rep. Robert Garcia, the top Democrat on the House Oversight Committee — asking him to drop the agency’s proposal.

“The collection of broad, personally identifiable data regarding medical care and treatment raises concerns that OPM could target certain federal employees seeking vital health care services that the Administration disagrees with on political grounds,” the Democratic House members , citing Ñî¹óåú´«Ã½Ò•îl Health News.

The letters from congressional Democrats alone are unlikely to reverse OPM’s plans. Republicans — who control Congress and, ultimately, any oversight activities — have not weighed in on OPM’s notice.

OPM did not immediately respond to a request for comment on the letters. The agency, which said in its notice that it will use the data for oversight and to manage the federal health plans, has not publicly addressed written concerns about its proposal.

The notice, posted and sent to insurers in December, states that insurers are legally permitted to disclose “protected health information” to OPM and does not provide instructions to redact identifying information, such as names or diagnoses, from the claims.

That data could be used to implement cost-saving measures, health policy experts told Ñî¹óåú´«Ã½Ò•îl Health News earlier this month. But it would also give the Trump administration — which has laid off or fired tens of thousands of federal workers — access to a vast trove of personal information.

In the letters, Democratic lawmakers lay out a number of concerns about potential consequences of OPM’s obtaining detailed medical claims for millions of federal workers.

The — led by Adam Schiff of California and Mark Warner of Virginia — argues that OPM is not equipped to safeguard such sensitive data and that the administration could share the records across government agencies, as it has done with personal information on millions of Medicaid enrollees.

They also assert that the agency does not have a legal right to the data and that insurers’ sharing the information with OPM would “violate the core principles of the Health Insurance Portability and Accountability Act.” HIPAA requires certain organizations that maintain identifiable health information — such as hospitals and insurers — to protect it from being disclosed without patient consent. The proposal, the senators warn, threatens patients’ relationships with their clinicians, especially “sensitive disclosures regarding mental health, chronic illness, or other deeply personal conditions.”

“For these reasons, we strongly urge you to cease any further consideration of this proposal,” states the letter, which was sent to Kupor on April 19.

The American Federation of Government Employees, the largest union for federal employees, to Ñî¹óåú´«Ã½Ò•îl Health News’ reporting. The union noted in a statement from its national president, Everett Kelley, that OPM’s proposal “comes in the context of coordinated attacks on federal employees and repeated stretching of the legal boundaries for sharing sensitive personal data across government agencies.

“The question of what this administration intends to do with eight million Americans’ most private health information is not academic,” the AFGE statement read. “It is urgent.”

In an emailed statement, Kelley applauded the congressional letters.

“We are pleased that Democratic lawmakers on the Hill are just as outraged as we are over this administration’s blatant attempt to breach the privacy of millions of Americans across the country,” Kelley wrote. “We share their concerns regarding potential misuse of the information to continue illegally targeting workers and their demand for OPM to withdraw this proposal.”

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The federal government doesn’t track what happens to children after their parents are detained or deported, and state data varies. Independent news reports are scarce and likely undercount the issue. But there’s evidence that in many states some of the children are being placed in foster care. 

In Oregon, for example, there have been at least two cases in which children who were separated from their parents were placed into foster care by the state. Jake Sunderland, press secretary for the state Department of Human Services, said that before last fall, this “simply had never happened before.” 

Separation from a parent can be deeply traumatic for children and lead to a broad range of , including post-traumatic stress disorder. Some states have responded by updating their temporary guardianship laws to help immigrant parents better prepare care for their children in the event of their detention or deportation.

Lawmakers in New Jersey are to allow parents to nominate standby, or temporary, guardians in the event of death, incapacity, or debilitation. The proposal adds separation caused by federal immigration enforcement as another allowable reason. 

Nevada and California passed similar laws last year. 

Yet some parents are hesitant to participate, said Cristian Gonzalez-Perez, an attorney at Make the Road Nevada, a nonprofit that provides resources to immigrant communities. The hesitancy is out of fear that Immigration and Customs Enforcement agents could access their personal information and use it to target them for detention or deportation.

My colleagues Claudia Boyd-Barrett, Renuka Rayasam, and Amanda Seitz reported on a case in which ICE used data from the Department of Health and Human Services’ Office of Refugee Resettlement to detain parents under the impression they were reuniting with their children, highlighting the precarious situation for immigrant parents. 

Additionally, ICE detention makes it difficult to reunite parents with their children if they’ve been placed in foster care because reunification often requires court-ordered programs, said Juan Guzman, director of children’s court and guardianship at the Alliance for Children’s Rights, a legal advocacy organization in Los Angeles. Nominating a guardian is one way to ease immigrants’ feelings of helplessness when facing the threat of detention or deportation, Gonzalez-Perez said.

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But Republican lawmakers in some states think the new rules — part of the GOP’s One Big Beautiful Bill Act, signed last July by President Donald Trump — don’t go far enough.

Indiana is leading that charge, with a new law that requires applicants to prove they’ve been working or participating in a similar activity for three consecutive months to get benefits.

Meanwhile, residents in many other states will have to show they’ve been working just one month, the least cumbersome option under Trump’s signature tax-and-domestic-spending law. It instructs states to decide whether to require one, two, or three months of work history.

As in Indiana, Republican Idaho lawmakers approved a three-month requirement, and the state’s governor signed the bill into law on April 10.

The efforts, along with similar moves in Arizona, Missouri, and Kentucky, are aimed at restricting flexibility to implement the federal law at the state level.

“Normally, you would not see state legislators weighing in on these decisions,” said Lucy Dagneau, a senior official with the American Cancer Society’s advocacy arm.

The nonpartisan Congressional Budget Office estimated 18.5 million adults will be subject to the new rules, which will be enforced across 42 states and the District of Columbia. In Indiana, work rules will target about 33% of the state’s Medicaid population. The rules generally wouldn’t apply to children, people 65 or older, or people with disabilities or serious health issues.

Typically, state administrators — not lawmakers — detail how they plan to comply with new federal standards, and they often look to federal regulators for guidance. But officials at the Centers for Medicare & Medicaid Services have yet to tell states how to comply with many aspects of the sweeping budget law, leaving state lawmakers to intervene.

Gov. Mike Braun, a Republican, signed the Indiana bill into law on March 4, making his state the first to set the Medicaid work requirement at three months — the longest period allowed under the federal law.

Republican state Sen. Chris Garten introduced a bill in January, saying it was needed to “align” state law with the new federal Medicaid rules. He also pitched the bill as a way to crack down on “waste, fraud, and abuse” in public programs.

When ineligible people get enrolled, it robs “the truly vulnerable Hoosier who actually needs the help,” Garten said during a January committee hearing.

Democratic state Sen. Fady Qaddoura expressed skepticism during the hearing and questioned the necessity of the legislation. Qaddoura asked Indiana Family and Social Services Administration Secretary Mitch Roob to provide an estimate of the number of ineligible people who enrolled in Medicaid in the state.

“I think very few,” Roob replied. “It’ll never be none.”

After hearing Roob’s answer, Qaddoura said there is no evidence of a widespread problem in Indiana. He accused Republicans of using waste, fraud, and abuse as justification to deny health benefits and food aid to vulnerable Hoosiers.

Garten later called Qaddoura’s accusation a “fundamental mischaracterization” of the bill.

Republicans have said imposing these limits protects the Medicaid program’s longevity.

“We believe in a safety net for our most vulnerable, not a hammock for able-bodied adults that choose not to work,” Garten said. “By tightening these screws, we ensure that our safety net remains sustainable.”

Indiana’s Medicaid enrollment is expected to decrease because of Garten’s legislation, according to an analysis from Indiana’s nonpartisan Legislative Services Agency.

Medicaid helps keep people healthy, so they can continue to work, said Adam Mueller, executive director of the Indiana Justice Project, a nonpartisan legal advocacy organization focusing on health, housing, and food insecurity.

Mueller worries that people will struggle to prove their work history, especially those with nontraditional jobs.

“If the point is to get people engaged, the one month would do it,” Mueller said.

Ultimately, he fears the law will harm Hoosiers with the greatest need for assistance. “They’re going to get tripped up by the bureaucratic hurdles.”

An analysis by the Center on Budget and Policy Priorities predicted that work rules will and that how states choose to implement the rules will “significantly affect the number of people who lose coverage.” State policy decisions will determine just “how intense the burden is,” the left-leaning think tank found, and opting for a shorter look-back period “will enable more people to enroll.”

Lawmakers in multiple states considered limits. And the same right-leaning lobbying group, the Foundation for Government Accountability, testified in favor of these measures in Arizona, Indiana, and Missouri.

In Missouri, FGA lobbyist James Harris said the measure intends to “move people from dependency and give them back that dignity and pride of work.”

Missouri state Rep. Darin Chappell proposed requiring a three-month look-back period like the measure in Indiana. But the latest version of the bill he sponsored would require applicants to show they were working for only one month before enrolling.

Chappell, a Republican, said his initiative would encourage a “working mindset.”

Anna Meyer, owner of a small bakery in Columbia, Missouri, said the implication is that she and others on Medicaid are lazy. “I have been working since I was 15 years old,” she said. “I’m 43 now.”

Meyer, who voiced her opposition, said she previously had problems submitting information to the state Medicaid agency. She fears new reporting requirements will put her and others at risk of losing coverage, even if they meet the work rule.

She has fibromyalgia, a chronic condition that increases overall sensitivity to pain. She also has food allergies. Medicaid helps pay for medications and doctor visits that keep her healthy and allow her to keep working.

“I work very hard,” Meyer said.

In St. Louis, Jessica Norton, an OB-GYN, treats many Medicaid patients at an Affinia Healthcare clinic. She said they struggle to remain insured even though Missouri extends a full year of Medicaid coverage to eligible women after they give birth. Some of her patients are inexplicably kicked off that coverage by the time of their checkups six weeks after birth. She fears red tape from the new work requirements will make it harder to hang on to insurance, even though pregnant women and new mothers are supposed to be exempt.

Norton criticized lawmakers for the message this policy sends to vulnerable patients. They are saying, “Oh, actually, health care is a privilege, and you have to earn it,” she said.

of adults ages 19 to 64 on Medicaid already work, according to KFF. The reason many of the remaining adults on Medicaid are not working is that they are retired, serving as a caregiver, or too sick, KFF has found.

Some states are not only setting the strictest requirements but also blocking out the optional leniency built into the federal rules.

For example, states may adopt additional exemptions from work rules, such as allowing people to claim a “short-term hardship,” designed to provide continued Medicaid coverage to people with medical conditions that prevent them from working.

Missouri lawmakers are seeking a constitutional amendment to bar their state from offering such optional exemptions. But patient advocates warn these limits would harm the state’s vulnerable residents when they need coverage the most, particularly Missouri’s rural cancer patients.

Often, rural Missouri patients must travel to Kansas City or St. Louis for treatment, disrupting their ability to work, Emily Kalmer, a lobbyist for the American Cancer Society’s advocacy arm, testified at the January hearing. Recognizing this, the federal law provides certain exemptions for this kind of scenario.

But this short-term hardship exemption would be off the table in Missouri.

Time is “very important in the life of a cancer patient or a cancer survivor,” Kalmer said.

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It started building over the summer, fed by news of across Southern California, Trump administration plans to with Immigration and Customs Enforcement, and the passage of state and federal restrictions on immigrant Medicaid eligibility. Then in November, the federal government released a new that, if enacted, could block certain immigrants from obtaining permanent legal residency if they or family members have used public benefits, including Medicaid.

Many of González’ clients and their children, often U.S. citizens, still qualify for California’s Medicaid program, known as Medi-Cal, which provides health coverage to over 14 million residents with low incomes or disabilities. But increasingly, they don’t want to enroll or renew their coverage, she said.

“Many people don’t want to apply,” she said. “There are people who say they don’t even want to go outside and water their plants.”

An analysis by Ñî¹óåú´«Ã½Ò•îl Health News found that, from June to December, the latest month for which figures are available, almost 100,000 immigrants without legal status left Medi-Cal, representing about a quarter of all disenrollments in that time frame, even though this group makes up only about 11% of Medi-Cal enrollees.

It marks a reversal in a steady rise in enrollment among immigrants without legal status in California. Until July, sign-ups among this group had risen every month since the state opened Medi-Cal to all low-income residents regardless of immigration status in January 2024.

Tessa Outhyse, a spokesperson for the California Department of Health Care Services, which oversees Medi-Cal, said the enrollment declines can be mostly attributed to the fact that the government restarted eligibility checks that were suspended during the covid-19 pandemic. Indeed, overall Medi-Cal enrollment peaked in May 2023, and has since declined by about 1.6 million.

But two researchers, Leonardo Cuello at Georgetown University’s Center for Children and Families and Susan Babey at the UCLA Center for Health Policy Research, pointed out that California and most other states had fully resumed eligibility checks . In other words, that wouldn’t explain why enrollment has fallen precipitously in the last 12 months or so.

What has changed, Cuello said, is that the federal government passed the One Big Beautiful Bill Act, and executive orders added more changes that are propelling disenrollment.

Surveys Offer Clues

found immigrant adults nationally, especially parents, to be increasingly avoiding government programs that help pay for food, housing, or health care, to avoid drawing attention to their or a family member’s immigration status. That included lawfully present residents and naturalized citizens. Parental avoidance of these programs is particularly concerning, Cuello said, because about 1 in 4 children in the U.S. have an immigrant parent, even though most of those children were born in the U.S.

Cuello suspects that may help explain a nationwide enrollment drop of almost 3% in Medicaid and the Children’s Health Insurance Program during the first 10 months of last year, including a 5.6% drop in enrollment among California children, according to .

During the first Trump administration, the president broadened public charge criteria to allow consideration of Medicaid use and food and housing assistance. That led many citizen children and other household members to they were eligible for. Some the programs even after several courts blocked implementation and Democratic President Joe Biden rescinded the rule.

“It caused a high level of confusion,” said Louise McCarthy, president and CEO of the Community Clinic Association of Los Angeles County, which represents about 70 health centers in the Los Angeles area. “Community health center staff are still working to undo the effects of the first rule.”

Projected Savings

Currently, only people reliant on cash assistance programs or long-term, government-funded institutionalized care may be considered a public charge risk when applying for a visa to enter the country or to become a legal permanent resident. But under the Trump administration’s proposed rule, Medicaid and other noncash programs could be used to determine whether an immigrant is likely to become dependent on the government. Immigration officers would also have more discretion to label people a public charge.

The Department of Homeland Security’s proposal says the changes are needed because the existing rules hamper the agency’s ability to make decisions about an immigrant’s risk of becoming reliant on government resources. A public comment period for the proposal ended in December.

DHS did not respond to a request about when it plans to make a final decision on the rule. The change would “align with long-standing policy that aliens in the United States should be self-reliant and government benefits should not incentivize immigration,” the proposal states.

The agency projected the change could save federal and state governments almost $9 billion annually from people disenrolling from or forgoing enrollment in public benefit programs.

A of the proposed rule estimated it could result in 1.3 to 4 million people disenrolling from Medicaid or CHIP, including as many as 1.8 million citizen children.

“It’s clearly being weaponized to create fear and anxiety,” said Benyamin Chao, supervising health and public benefits policy manager at the California Immigrant Policy Center. He called the proposal part of an “assault on lawfully present immigrants and U.S. citizens who are family members, and just the general community.”

Public charge fears are expected to decrease enrollment also in anti-hunger programs, such as the Supplemental Nutrition Assistance Program, known in California as CalFresh. Mark Lowry, who heads the Orange County Food Bank, said that that — along with disenrollment related to the One Big Beautiful Bill Act — could overwhelm food pantries, since federal nutrition programs account for the vast majority of food aid.

“There’s no way that the emergency food system has the capacity or resources to address those needs,” he said.

Health Care Needs

Fear of Medi-Cal enrollment doesn’t extend to all immigrants. Juana Zaragoza manages a program in Oxnard that helps mostly Indigenous Mexican farmworkers sign up for Medi-Cal. Overall enrollment and reenrollment has remained steady over the past few months, she said. Neither she nor the community members she serves know much about the public charge proposal, she added.

Often, any concerns they have are outweighed by an immediate need for health care.

“We encounter a lot of people who are balancing: what benefits me now and what benefits me later,” she said. “Some just want to cover their needs in the moment.”

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The federal government doesn’t track how many children have entered foster care because of immigration enforcement actions, leaving it unclear how often it happens. In Oregon, as of February two children had been placed in foster care after being separated from their parents in immigration detention cases, according to Jake Sunderland, a spokesperson for the Oregon Department of Human Services.

“Before fall 2025, this simply had never happened before,” Sunderland said.

As of mid-February, nearly by Immigration and Customs Enforcement. The record 73,000 people in detention in January represented an compared with one year before. According to , parents of 11,000 children who are U.S. citizens were detained from the beginning of Trump’s term through August.

The news outlet NOTUS that at least 32 children of detained or deported parents had been placed in foster care in seven states.

Sandy Santana, executive director of Children’s Rights, a legal advocacy organization, said he thinks the actual number is much higher.

“That, to us, seems really, really low,” he said.

Separation from a parent is deeply traumatic for children and can lead to , including post-traumatic stress disorder. Prolonged, intense stress can lead to more-frequent infections in children and developmental issues. That “toxic stress” is also associated with responsible for learning and memory, according to KFF.

, and amended existing laws during Trump’s first term to allow guardians to be granted temporary parental rights for immigration enforcement reasons. Now the enforcement surge that began after Trump returned to office last year has prompted a new wave of state responses.

In New Jersey, lawmakers are considering to amend a state law that allows parents to nominate standby, or temporary, guardians in the cases of death, incapacity, or debilitation. The bill would add separation due to federal immigration enforcement as another allowable reason.

Nevada and California passed laws last year to protect families separated by immigration enforcement actions. California’s law, called the , allows parents to nominate guardians and share custodial rights, instead of having them suspended, while they’re detained. They regain their full parental rights if they are released and are able to reunite with their children.

There are significant legal barriers to reunification once a child is placed in state custody, said Juan Guzman, director of children’s court and guardianship at the Alliance for Children’s Rights, a legal advocacy organization in Los Angeles.

If a parent’s child is placed in foster care and the parent cannot participate in required court proceedings because they are in detention or have been deported, it’s less likely they will be able to reunite with their child, Guzman said.

are U.S. citizens who live with a parent or family member who does not have legal immigration status, according to research from the Brookings Institution, a Washington, D.C.-based think tank. Within that group, 2.6 million children have two parents lacking legal status.

Santana said he expects the number of family separation cases to grow as the Trump administration continues its immigration enforcement campaign, putting more children at risk of being placed in foster care.

the agency to make efforts to facilitate detained parents’ participation in family court, child welfare, or guardianship proceedings, but Santana said it’s uncertain whether ICE is complying with those rules.

ICE officials did not respond to requests for comment for this report.

Before the change in California’s law, the only way a parent could share custodial rights with another guardian was if the parent was terminally ill, Guzman said.

If parents create a preparedness plan and identify an individual to assume guardianship of their children, the state child welfare agency can begin the process of placing the children with that individual without opening a formal foster care case, he added.

While Nevada lawmakers expanded an existing guardianship law last year to include immigration enforcement, the measure requires the parents to take the additional step of filing notarized paperwork with the secretary of state’s office, said Cristian Gonzalez-Perez, an attorney at Make the Road Nevada, a nonprofit that provides resources to immigrant communities.

Gonzalez-Perez said some immigrants are still hesitant to fill out government forms, out of fear that ICE might access their information and target them. He reassures community members that the state forms are secure and can be accessed only by hospitals and courts.

The Trump administration has taken through the Centers for Medicare & Medicaid Services, the IRS, the Supplemental Nutrition Assistance Program, the Department of Housing and Urban Development, and other entities.

Gonzalez-Perez and Guzman said that not enough immigrant parents know their rights. Nominating a temporary guardian and creating a plan for their families is one way they can prevent feelings of helplessness, Gonzalez-Perez said.

“Folks don’t want to talk about it, right?” Guzman said. “The parent having to speak to a child about the possibility of separation, it’s scary. It’s not something anybody wants to do.”

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“I will not go to the emergency room” — emphasis on not — were his first words after passing out, having a seizure, or regurgitating the protein smoothies I made to pass his narrowed esophagus. He said it again and again, even as fluid built up in his lungs, rendering him short of breath and prone to agonizing coughing spells. He had been a big, athletic guy, but now, in the ugly process of dying, he was looking gaunt. Ours was a precarious existence, but I understood his adamant rejection of the emergency department. Most prior visits had morphed into extended trips into a terrifying medical underworld — to a purgatory known as emergency department boarding.

I managed to keep Andrej at home while we planned for hospice, until one dreadful night at 2 a.m., when I ran out of hacks. We got into an ambulance and together headed to the hospital.

* * *

We had already learned the hard way that if you need admission to the hospital, you can remain in the emergency department — in the hallway or a curtained bay on a hard stretcher or in a makeshift holding area — for more than 24 hours, even for days, while waiting for a real hospital bed. In this limbo state, you’re technically admitted to the hospital, but still located in the physical domain of the ER. And the rules governing acceptable care and safety measures become much less clear.

In the summer of 2024, still being treated to keep his cancer at bay, Andrej had suddenly become somewhat delirious, requiring hospital admission to rule out the possibility of infection or, worse, of the cancer having spread to his brain. After we went to an emergency department near our home, in New York City, he lay trapped on a hard stretcher, with its rails up, for more than 36 hours, amid the alarms and calls for the code team, without any clues of whether it was day or night, and with access only to the few toilets shared by the dozens of patients and visitors in the emergency room. None of this helped his mental state. By the end of Day 2, he knew me — kind of — but had become convinced that the doctors were “the enemy” and that I was their paid accomplice.

After I pressed to move him to a bed “upstairs” — I meant to an inpatient ward — he was transported to a bed five floors higher. I realized too late that this was an “ED overflow area,” according to the paper sign attached to the entrance’s swinging door. A plaque in the hall identified it as a former labor and delivery floor. It had been kitted out with some of the trappings of an actual ward, such as real beds and bathrooms, but not the most important one: adequate personnel.

The space was by turns eerily quiet and wildly cacophonous. Although patients there were undergoing intimate, embarrassing procedures, rooms were gender-neutral. That first night, Andrej’s roommates were a man in a coma and an elderly French woman in a diaper and boots (no pants), who marched around her bed singing like a chanteuse. In the morning, I pestered a harried nurse and got Andrej moved to a quieter room with three beds, where two people died in three days.

The overworked staff did the best they could, but that was far from good care. My husband — who needed protein and calories but could consume only soft foods — was served chicken cutlets. When I noted to one nurse that Andrej’s soiled sheets hadn’t been changed for several days, she directed me to a linen cart so I could change them myself.

* * *

That first time, one of several extended ER stays Andrej made as a boarder, I thought perhaps we had just hit a busy time at a busy hospital. When I worked as an emergency medicine doctor a few decades ago, the ED was mostly empty at the beginning of my 7 a.m. shift. A few patients might be lingering from the day before: alcoholics who would sober up and leave, patients with a severe burn or a bad case of pneumonia who were waiting for a bed in intensive care.

In the decades since, EDs have doubled or even tripled in size. Even so, patients are piling up. When I started asking around, I quickly discovered ED boarding has become commonplace in the past five or so years and is getting worse, more or less omnipresent in hospitals. “Everyone knows about this problem, and no one cares enough to do anything about it,” Adrian Haimovich, an ED doctor at Boston’s Beth Israel Deaconess Medical Center who studies ED boarding, told me. “It’s barbaric.”

Measuring the problem has been challenging because data on ED boarding time is limited. Only this past November did the Centers for Medicare & Medicaid Services finalize a rule that would require hospitals to collect data on ED boarding times. Using what other data he could find, Haimovich has shown that boarding for more than 24 hours has increased dramatically for people 65 and older since the pandemic.

Once they enter ED boarding, patients exist in a gray zone. There has been a national push to establish “safe staffing” in EDs. Even with that, if an ED boarder has a medical complaint that needs quick attention, it’s easy for them to fall through the cracks, Haimovich said: In some hospitals, an admitting team of doctors from upstairs is responsible for the boarders stuck in the ED (but not the associated floor nurses); in others, overstretched ED medical staff must take full responsibility to care for boarders until a bed opens — and that in addition to seeing new patients. Some EDs now routinely hold more boarders — many of them quite ill — than patients being actively evaluated.

Doctors and nurses have complained bitterly about the situation, which forces them to provide inadequate care. Gabe Kelen, the director of emergency medicine at Johns Hopkins University, told me it’s creating a for emergency department staff. But doctors and department heads such as Kelen are not in control of admissions. Generally, a hospital’s administration parcels out inpatient beds, and emergency department boarding is in many ways a result of today’s business models and pressures.

* * *

When I worked as a doctor, if an ED was overwhelmed beyond capacity, the attending (that was me) typically called in to ambulance dispatch to request “diversion” — ambulances should take patients to another hospital. If a hospital got too full, the admitting office canceled elective admissions. Today, hospitals run like airlines and intentionally overbook, Kelen said. They also have fewer beds than they did a few years ago — in part because nurse (and executive) salaries have risen since the pandemic. An empty, staffed bed is a money loser, so the institution has an incentive to keep beds full and make new patients wait.

“The problem isn’t inefficiency — it’s the way health care finance is structured,” Kelen said. “Hospitals typically run on thin margins. Elective admissions are prioritized because they tend to be for lucrative procedures like heart catheterizations and joint replacements.”

Admitting patients through the emergency room has business advantages, too, even if it means they wait for a bed. The evaluation generates charges that typically run many thousands of dollars; once admitted, my husband was still billed the inpatient rate even for a stretcher in the hall. Old, sick, and dying patients are more likely to linger there in part because, after they’re in a real bed, they may take up that spot for days or weeks at a time while waiting for a bed in rehab or hospice, requiring nursing time but not the types of interventions that generate revenue.

Hospitals have tried band-aid fixes, such as bed-tracking software and discharge lounges where patients can wait for paperwork or transport home. Many do hire more doctors and nurses and orderlies in the ER to confront the overflow. But “long ED wait times and boarding have root causes that extend far beyond EDs and hospitals themselves,” Chris DeRienzo, the chief physician executive at the American Hospital Association, told me in an email. He listed the high cost of opening beds and the shortage of rehabilitation facilities, and emphasized the precarious financial situation of many hospitals.

But while Andrej waited in the overflow area, we were not thinking of any larger picture: He was sick, desperate, and still waiting for care. He lingered in boarding for four days before he got a bed. Each time he had to return to the ED, each time he faced a painful wait, he hardened his resolve to never go back.

* * *

Thunk. Crash. “Elisabeth, help!” Those were the sounds that woke me at 2 a.m.

I had fallen asleep on our bed, next to Andrej, his head raised with a foam wedge to ease his breathing and make sure food would not come up. Before I dozed off, I listened to his breathing — 30 times a minute, two times faster than normal — a sign he was struggling to get sufficient oxygen. And that racking cough. This was not good.

Now his bruised body was twisted, lying on the floor with his head against the bed frame. He’d attempted to use his walker to go to the bathroom. He was complaining of chest pain, coughing and short of breath. But he managed to get out those words: “I will not go to the ER.”

I knelt by his side in tears, telling him that I loved him but that I could not do anything more right now at home. Carlos, our super, helped me get him into bed and called EMS. I promised Andrej (against hope) that, given his condition, he would surely be quickly assigned to a real room and bed.

What happened next was a blur. I have a vague memory of paramedics arriving, putting him on the stretcher, sliding him into the ambulance, giving him oxygen. I mechanically grabbed his “do not resuscitate” form from under the refrigerator magnet and buckled myself in beside him.

Then he was in the ED, which was thrumming with activity, under the fluorescent lights, with oxygen in his nose, wearing a hospital gown, and looking gray and sick. The staff asked what was, for them, the operative question about a guy with widespread cancer: “Does he have a DNR?” Andrej asked me what was, for him, the operative question: “Did you bring my shoes?” He already wanted to leave.

An X-ray showed possible pneumonia, more tumors, and a buildup of fluid in his lungs. A medical team that covers oncology patients wrote an admitting note — he was now a boarder, again — and then retreated upstairs. They started antibiotics and gave him something to help him sleep amid the alarms and shouting. He didn’t.

When I came back the next morning — and two mornings after that — I was alarmed to see him still there on a hard stretcher, his feet dangling off the end, exhausted and in pain. “When will he be admitted to a bed?” I implored. If some of the stuff in his lungs was infectious, maybe he could be treated and get home.

Likely soon and I hear your frustration — I came to detest those two phrases.

Neighboring patients came and went 24 hours a day. Some were pleasant; some were screaming in pain or just screaming mad. Pulmonary doctors came and, in this semipublic space, used a large needle to remove three liters of fluid from Andrej’s right lung cavity.

* * *

Near the end of the Biden administration, in response to a bipartisan congressional request, the Department of Health and Human Services convened a meeting on emergency department boarding. Its report, from HHS’ Agency for Healthcare Research and Quality, came out the same month that the Trump administration took office, not long before Andrej’s fall — the last night he spent at home.

“Emergency department (ED) boarding is a public health crisis in the United States,” the report concluded. “Patients who are sick enough to require inpatient care can wait in the ED for hours, days, or even weeks.”

“Boarding contributes to increased mortality, medical errors, prolonged hospital stays, and greater dissatisfaction with care,” the report said.

The meeting proposal called for the formation of an expert panel to recommend solutions. In theory, a panel could have weighed in on key questions: Should hospitals — some of which are rich institutions — get paid an inpatient rate for boarding in the ED? Should they have to report boarding times and face penalties for excess? Should they be required to open more real beds, and should requirements for licensing be lessened? How can the country create more rehabilitation beds?

But since then, the Trump administration has dramatically cut that HHS agency’s staffing, as well as its grant programs. (Congress is still pushing to fund the agency.) The expert panel never formed, let alone offered solutions. The Centers for Medicare & Medicaid Services this year did initiate that will include voluntary reporting of boarding times in 2027, becoming mandatory in 2028. Bad marks will eventually affect Medicare reimbursement.

In an emailed statement, the Joint Commission, which certifies the nation’s hospitals, called boarding a “serious public health crisis” and “one of the most incredibly complex challenges in healthcare.” Although the organization does indirectly look at hospitals’ “ED throughput” from charts, such data is not comprehensive. Little information exists, for instance, about how many people’s last days are spent on stretchers, in hospital limbo.

None of this knowledge would have helped my dying husband. So I did what I’d promised myself I’d never do: I called a doctor friend, who called the hospital’s VIP office.

Suddenly Andrej was whisked to a real hospital room, with a bed that he could adjust to keep his head elevated, a tray he could eat from, a morphine pump, a TV, a bathroom, and a nurse call button at his side. A room with extra chairs, so his stepkids and friends could visit with gifts and mementos one last time. A room where the caring staff placed a chaise longue, where I could sleep over. That way, when he woke scared and coughing and yelling for me, I was there to hold his hand, adjust the oxygen, and push the button for an extra dose of narcotic.

Until, six days after we got in the ambulance and three days after we’d moved to this room, he woke early one morning, agitated and coughing, calling out, “Elisabeth?” I was there. But then, in a blink, he wasn’t.

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But officials warned that all optional Medicaid services are still under review as the state health department looks for cuts to offset a shortfall driven by higher-than-expected Medicaid costs.

Jon Ebelt, a spokesperson with the Montana Department of Public Health and Human Services, said the agency is preparing a request to the federal government to add doula care to the state’s Medicaid program. It would cost the state about $118,000 in its first year to provide doula Medicaid reimbursements, according to .

His April 15 comments came three weeks after department officials told Ñî¹óåú´«Ã½Ò•îl Health News that the state budget deficit had put those plans on hold. Ebelt denied that a final decision had been made in March to scrap the doula Medicaid payments, which state lawmakers approved in a bill last year. The coverage is “now proceeding as planned,” he said.

“At the time of your initial inquiry, we were still in the process of analyzing the appropriation,” Ebelt said.

Federal health officials must approve any amendments to the state’s Medicaid program before payments can begin. reimburse doulas through Medicaid.

Doulas are trained, nonmedical workers who support people through pregnancy and after they give birth. The care they provide is in health complications, which has prompted more states to cover doula services in recent years.

Montana lawmakers who supported expanding Medicaid to cover doula care in 2025 cited scarce maternity services, especially in rural and Indigenous communities. But this year, the state has a Medicaid budget deficit of more than and is expecting a similar shortfall next year. Plus, federal policy changes slated to take effect later this year are expected to increase costs.

“ There’s a need and a desire for doula services, but a lot of people can’t afford it,” said Sheri Walker, a Helena-based doula and president of the . “So that means many of us have other jobs that we have to juggle.”

Walker is a part-time labor and delivery nurse outside of her doula work.

On March 25, health department spokesperson Holly Matkin said in an email to Ñî¹óåú´«Ã½Ò•îl Health News that the agency “will not be moving forward with the implementation of doula services in the Montana Medicaid benefit package at this time.” She had added that it was unclear whether state law gives the department the authority to authorize coverage during the budget shortfall.

State Sen. , a Democrat who sponsored last year’s bipartisan doula reimbursement bill, said she didn’t know about the department’s plans until she saw Ñî¹óåú´«Ã½Ò•îl Health News’ reporting. Neumann said she and groups that had backed the legislation began calling health officials, making the case for doula services as a low-cost way to provide critical care.

After about a week, Neumann said, state officials told her the agency was moving ahead with doula services after all.

“They were on the chopping block,” Neumann said. “This is a story of how important it is for all Montanans to pay attention and stay connected to what’s happening.”

Ebelt did not clarify what led the department to change its position. However, he warned that optional Medicaid services, such as doula services, may still be cut.

“All optional services, including this service, are being reviewed,” Ebelt said, referring to doula care. He did not respond to a follow-up query as to whether the department might still decide to postpone the program following federal approval.

are types of care that states choose to cover through their Medicaid programs but aren’t required by federal law. That can include covering eyeglasses, prescription drugs, and prosthetics, and more specialized care such as physical therapy, or inpatient psychiatric services for people under 21.

Those services may not sound optional, said , who studies Medicaid financing at KFF, a health information nonprofit that includes Ñî¹óåú´«Ã½Ò•îl Health News. But she said they’re one of the few avenues states have to make adjustments when budgets get tight.

Congressional Republicans’ One Big Beautiful Bill Act, the spending measure President Donald Trump signed into law last July, is expected to put more states in a budget crunch as its provisions start to take effect by the end of the year. The federal government has estimated that the law will reduce federal Medicaid spending by nearly $1 trillion over 10 years. The law also left states with a higher share of the costs to provide food assistance.

Williams said many states expanded services in recent years by boosting optional Medicaid benefits and provider pay.

“We could see them walk those back,” Williams said.

Montana’s financial problems preceded federal changes. Last year, state lawmakers cut some of the health department’s funding and underestimated Medicaid use. The state also overestimated what the federal government would pay toward Montana’s Medicaid costs.

Health officials must outline a plan to cut costs before the state’s 2027 budget year begins on July 1. Simultaneously, the agency is trying to hire more staffers to begin vetting whether Medicaid enrollees meet or are exempt from new work requirements that also go in place July 1. The new rules, mandated through long-delayed state legislation and the federal spending law, will have a three-month grace period.

Stephanie Morton, executive director of , said she’s grateful the state is back on track to pay for doula services through Medicaid. But she said she’s worried about potential health care cuts to come.

“We know that doulas are a critical piece of that infrastructure, but standing alone and losing other sources of care really isn’t optimal,” Morton said. “These are not robust systems as it stands.”

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McLeod, who lives near Charleston, South Carolina, is still paying off chemotherapy bills that followed her 2017 diagnosis. She also now faces an onslaught of out-of-pocket costs for follow-up monitoring and care, including regular visits to a pulmonologist and allergist.

McLeod, 45, said she had already spent $2,500 in the first two months of the year and owes an additional $1,300 from a January colonoscopy. That’s on top of the $895 monthly premium for a health insurance plan that covers her family of six.

Those costs have led McLeod to ration her other care. Despite feeling intense chest pain since February, for example, she is putting off a CT scan and a visit to a heart specialist.

“You’re forced to pick and choose as to where your priorities really need to be,” said McLeod, director of strategic programs and partnerships at the Cancer Hope Network, a nonprofit that supports cancer patients. Even in that role, she struggles to navigate the financial aftermath of surviving the disease.

The cost of postcancer care often “keeps us hostage,” she said.

McLeod is one of nearly 19 million U.S. cancer survivors, many of whom continue to need prescriptions, doctor visits, and procedures to monitor their condition and manage posttreatment side effects. Of more than 1,200 cancer patients and survivors , about 47% said they had carried medical debt, with nearly half having owed more than $5,000, according to the American Cancer Society Cancer Action Network.

Yet health policy researchers and patient advocates said the experiences of cancer survivors reveal the limits of the Trump administration’s proposals to lower premiums, which may not help patients who accumulate large medical bills year after year. The proposals center on increasing the availability of high-deductible health plans, which have lower monthly payments but require patients to pay thousands of dollars out-of-pocket before coverage kicks in.

In addition, the administration has supported allowing insurers more leeway to sell plans that are not compliant with the Affordable Care Act. Such plans could bar people who have preexisting health conditions, like a cancer diagnosis, and exclude that ACA plans are required to cover.

The administration did not answer a request for comment on how its proposals would affect cancer survivors. But its supporters say, in general, people would have more flexibility to personalize coverage and more options for plans with lower monthly fees.

Michael Cannon, director of health policy studies at the Cato Institute, a libertarian think tank, believes patients would have better control over spending, and the option to choose what kind of care gets covered, if health plans were exempted from the ACA’s regulations. A person could opt for a plan that includes cancer treatment but not maternity care, for example.

History proves insurance coverage is not that simple, especially for people with preexisting conditions, said Jennifer Hoque, an associate policy principal with the American Cancer Society Cancer Action Network. When health plans could “pick and choose” enrollees based on preexisting conditions prior to the ACA, people needing the costliest care often struggled to find coverage, she said.

“They’re not going to choose a cancer survivor,” Hoque said of health insurers.

That was the case for Veronika Panagiotou, who said private insurers refused her coverage back in September 2013 because she had a high body mass index. Two months later, as a 25-year-old uninsured graduate student, she was diagnosed with non-Hodgkin lymphoma. The hospital treated her, she recalled, “and sent me all the bills.”

In January 2014, Panagiotou was able to buy one of the first ACA plans that went into effect. It covered chemotherapy and immunotherapy treatment, imaging, medications, hospital stays, weekly blood draws, a blood transfusion, and emergency room visits.

Now Panagiotou, 37, is cancer-free and works as director of advocacy and programs at Cancer Nation, a nonprofit advocacy group. Even though she is covered through her employer, Panagiotou said treatment-related expenses weigh heavily on her life decisions.

“Every choice I make, I think about cancer,” she said.

Chris Bond, a spokesperson for AHIP, the main health insurance trade association, said its members are working to improve access to coverage. But that can be a challenge when doctors and drugmakers are hiking prices, he said. Health plans are trying to “shield Americans from the full impact of those rising costs,” Bond said.

The Lymphoma Research Foundation has seen a 10% increase in applications to its patient aid fund this year, CEO Meghan Gutierrez said. “This trajectory suggests that financial safety nets, when they exist, are straining,” she said.

Rising prices are affecting everyone, regardless of the kind of health insurance they have, if any, said Brian Blase, president of Paragon Health Institute, a Republican-aligned think tank. “The biggest challenge for cancer patients isn’t the type of coverage,” he said. “It’s the underlying cost of care.”

Blase pointed to President Donald Trump’s as potentially helpful to cancer survivors. The Medicare Drug Price Negotiation Program, established by the Inflation Reduction Act of 2022, required the Department of Health and Human Services to negotiate prices for certain high-cost drugs, to lower prices for the federal health insurance program for people ages 65 and older. Drugs for breast, prostate, and kidney cancers are already on that list, .

Yet Hoque fears efforts to weaken ACA protections and financial support for marketplace plans will give cancer survivors — who she said tend to “hang on to insurance for dear life” — fewer options, especially between jobs or during career changes.

Erin Jones, a 31-year-old food policy researcher living in Fort Collins, Colorado, who was diagnosed with Hodgkin lymphoma as a young adult, is now cancer-free but still sees two oncologists, visits a high-risk breast clinic, and gets a breast MRI annually. Jones gets health insurance through the university where she works, and said she recently deferred acceptance to a PhD program partly due to uncertainty over affordable coverage.

“I don’t have the freedom to do the things I want to do as easily,” she said, “because I am constantly worried about health insurance.”

Costs related to surviving cancer, including monitoring for recurrence and treatment of side effects, were expected to reach $246 billion by 2030, up from $183 billion in 2015, according to .

Advancements in both detecting and curing cancer have resulted in a higher percentage of people surviving five years or more after diagnosis, according to the American Cancer Society. The number of survivors is expected to grow to more than 22 million people by 2035, .

Despite these advancements, the cost of treatment can steal the spotlight, said Ezekiel Emanuel, a co-director of the Healthcare Transformation Institute at the University of Pennsylvania and a onetime health policy adviser to former President Barack Obama.

An oncologist, Emanuel said he had observed patients make the difficult decision to delay or skip postcancer care as a result.

“Even when we triumph,” he said, “we don’t seem to be able to have a celebration.”

Are you struggling to afford your health insurance? Have you decided to forgo coverage? Click here to contact Ñî¹óåú´«Ã½Ò•îl Health News and share your story.

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The lawsuit, settled on confidential terms last year, blamed not only the managers of City Creek Post-Acute and Assisted Living but also the building’s owner, a real estate investment trust, or REIT.

In the year Darby died, City Creek paid CareTrust REIT more than $1 million in rent, while the Sacramento, California, nursing home ran a deficit, court records show.

Federal tax rules ban REITs from running health care facilities, but CareTrust was not an absentee landlord either, according to internal records filed in the case. It chose the nursing home’s management company and required through the lease that the home keep at least 80% of beds occupied. CareTrust granularly tracked how well the home kept to its financial plan, down to the money spent monthly on nurses and food, the records said. And the documents showed that the real estate company kept tabs on government safety inspection findings and Medicare quality ratings.

Both CareTrust and the nursing home operator denied liability for Darby’s death. CareTrust officials said in court papers that it is not involved in day-to-day nursing home decisions or patient care, and that it monitors facilities to ensure nothing jeopardizes rent payments. In a written statement, CareTrust Corporate Counsel Joseph Layne told Ñî¹óåú´«Ã½Ò•îl Health News: “We are the property owners, not the operators.”

Landlords With Influence

Over the past decade, real estate investment trusts have bought thousands of buildings that house nursing homes, hospitals, assisted living facilities, and medical offices. A Ñî¹óåú´«Ã½Ò•îl Health News examination of court filings and corporate records shows that these landlords have more influence than the health care facilities publicly acknowledge.

The documents reveal REITs often select the management who oversee the operations and leave them in place even when they are aware of threadbare staffing, floundering governance, repeated safety violations, or other problems that hamper quality of care. A California jury in March awarded $92 million in punitive damages against a former REIT over the death of a 100-year-old resident with dementia who froze to death outside her assisted living facility.

“The REITs are in charge,” said Laraclay Parker, one of the lawyers who represent Darby’s daughter.

Absence of Oversight

Despite their ubiquity, REITs remain invisible to state and federal health regulators. Hospitals and nursing homes are not required to disclose rent payments or landlord identities in the annual reports they submit to Medicare.

Under President Donald Trump, the Centers for Medicare & Medicaid Services a Biden-era requirement that nursing homes . Catherine Howden, a CMS spokesperson, said in a statement that the agency does not regulate facilities based on their tax status or corporate form and instead focuses on the quality of the care they provide.

REITs now of the nation’s senior housing, which includes assisted living, memory care, and independent living, according to an industry analysis. REITs also hold investments in nursing homes. Publicly traded REITs that focus on health care are now worth nearly a quarter of a trillion dollars, according to Nareit, an industry association.

While one research study found REIT investments were associated with , another concluded that after being bought by REITs, nursing homes frequently with less skilled nurses and aides. A concluded that health inspection results were worse after REIT investment.

Researchers also found that investor-owned hospital chains that sold buildings to REITs were or go bankrupt, with Steward Health Care. Often, private equity investors kept the sale proceeds as profits while the hospitals were burdened with new rent costs. “There were no improvements in clinical outcomes,” said Thomas Tsai, an associate professor at the Harvard T.H. Chan School of Public Health.

REITs are required to distribute most of their income and don’t have to pay the 21% federal corporate income tax on it. There is a catch: A REIT that “directly or indirectly operates or manages” a health care facility for five years. Typically, a REIT leases the property to another company that runs the nursing home or assisted living facility and maintains its tax break. Nareit said health care REITs distributed more than $7 billion in dividends in 2024.

Michael Stroyeck, head of health care analysis at Green Street, a real estate research company, said “there’s definitely a symbiotic relationship” between REITs and facility managers because they have the same goals. He said he has seen REITs replace operators that are having difficulties or go bankrupt.

John Kane, a senior vice president at the American Health Care Association and the National Center for Assisted Living, an industry group that represents nursing homes, said in a statement: “Given government funding often falls short, REITs have been valuable partners in helping to invest in long term care without influencing daily operations.”

Low Staffing at a Chain

Strawberry Fields REIT, which like CareTrust trades on the New York Stock Exchange, owns or controls the buildings of 131 nursing home facilities. The nursing home operations inside 66 of those facilities are owned by Moishe Gubin, Strawberry Fields’ chief executive, and Michael Blisko, one of its directors, according to Strawberry Fields’ for last year.

Gubin and Blisko also jointly own , which manages their nursing homes; Blisko is Infinity’s CEO. On average, Infinity-affiliated nursing homes provided an hour and a quarter less nursing care per resident per day than the national average of four hours, a Ñî¹óåú´«Ã½Ò•îl Health News analysis of federal records found.

Infinity and several of its nursing homes have recently settled 30 death and injury lawsuits in Cook County, Illinois, totaling more than $4 million, said Margaret Battersby Black, a Chicago lawyer. A jury last year awarded $12 million in a lawsuit brought against Infinity and one of its Chicago nursing homes over the 2023 death of Shirley Adams. A retired candy factory worker, Adams died after developing infected bedsores at Lakeview Rehabilitation and Nursing Center, according to the lawsuit.

“She had wounds that no one could explain,” one of her adult children, Leslie Adams, testified at trial. Medicare its lowest quality rating, one star out of five.

Paul Connery, a lawyer for Adams’ family, said they are still trying to collect on the judgment against the nursing home and management company, which now totals $17 million with interest and attorney fees.

“If I get caught speeding and I went to court, they issue me a ticket and I’ve got a fine to pay,” Adams said in an interview. “How are they able to still continue to move on with business like nothing has happened?”

In a phone interview and an email, Gubin said Strawberry Fields, Infinity, and the nursing homes are all legally distinct and that he has not played an active role in Infinity in more than a decade. He said nursing homes get sued all the time but that the verdict against Lakeview is so large that it will force the home to declare bankruptcy or shut down.

“The whole thing is unfortunate,” Gubin said by phone. “For 15 years they were a perfectly good guardian” and “a well-run building,” he said. “You wouldn’t think it was fair to be judged on your worst day.”

Blisko and an Infinity lawyer did not respond to requests for comment.

Strawberry Fields, which owns 10 assisted living facilities and two long-term care hospitals in addition to the nursing homes, earned net income last year of from $155 million in rent, a 21% profit margin, securities filings show. Gubin said those weren’t excessive returns.

A $110 Million Verdict

Traditionally, REIT leases make the operating companies responsible for paying property taxes, insurance premiums, and maintenance costs. In 2008, Congress gave health care REITs a new option to make money: On top of collecting rents, they could set up subsidiaries and take profits directly from health care businesses. They still must have independent management overseeing care decisions. Many REITs have embraced the role even though the subsidiaries must pay corporate taxes and risk losing money if the businesses do poorly.

Colony Capital was a REIT that through layers of shell corporations owned both the building and the operation of Greenhaven Estates, a Sacramento assisted living and memory care facility. In 2018 Greenhaven paid Colony $1.4 million in rent, nearly a third of its $4.5 million in revenue that year, according to financial records filed in court.

Greenhaven also was on the verge of losing its license, according to a revocation notice filed in November 2018 by the California Department of Social Services. Greenhaven had racked up years of health violations, including from letting untrained workers administer medications, lacking enough employees to care for people with dementia, and neglecting a resident who smeared feces over his body, bed, floor, and bathroom, the notice said.

In February 2019, a few weeks after celebrating her 100th birthday, Mildred Hernandez, a resident with Alzheimer’s, wandered out of Greenhaven in the middle of the night. Her assisted living wing had no exit door alarms even though it housed several residents with dementia, court records showed. Berta Lepe, one of Greenhaven’s caregivers, found Hernandez under a bush, wearing only a shirt and underwear. The temperature was in the 30s.

“She was talking, but I couldn’t understand what she was saying,” Lepe testified at trial over a lawsuit from Hernandez’s family. Hernandez died of hypothermia a few hours later, according to her death certificate.

Frontier Management, the company that Colony had hired to manage Greenhaven, denied liability and settled the lawsuit on undisclosed terms.

Since the lawsuit, Colony has changed its name to DigitalBridge, which no longer owns Greenhaven and gave up its REIT status. At trial earlier this year, DigitalBridge said resident care was the responsibility of Frontier and that Colony “encouraged” Frontier to address problems. Richard Welch, a former Colony executive, testified that replacing management is disruptive. “I viewed it as a last resort,” he said.

In March, a jury awarded Hernandez’s family $110 million: $10 million in compensatory damages, $92 million in punitive damages against DigitalBridge, and $8 million in punitive damages against Formation Capital, an asset management company.

“REIT money is very detached from knowing about or caring about patient or resident outcomes, because it’s not in their business model,” Ed Dudensing, a lawyer for the family, said in an interview. “Their allegiance is to their investors.”

DigitalBridge has asked the judge to delay finalizing the judgment while its legal challenges to the lawsuit and the verdict are evaluated. A DigitalBridge attorney and a corporate spokesperson did not respond to requests for comment, a Formation attorney declined comment, and a Frontier attorney and a spokesperson did not respond to a request for comment.

‘Wet From Head to Toe’

When CareTrust bought City Creek Post-Acute and Assisted Living in 2019, the Sacramento nursing home where Pearlene Darby lived had a one-star Medicare rating and was losing money. CareTrust leased the building to a management company called Kalesta Healthcare Group based on the business plan Kalesta submitted.

While CareTrust was not the operator, it held periodic phone calls with Kalesta, which provided “a full update of what’s happening at the facility,” including changes in leadership, financial progress, and health inspection survey results, according to deposition testimony by Ryan Williams, a Kalesta co-founder.

According to a state inspection report, in 2020, the year Darby died, City Creek left a resident in soiled linens “wet from head to toe lying in bed” for more than eight hours. During a different visit, a health inspector cited the home after watching a nurse put a dirty diaper back onto a resident after caring for a wound. “It was just a small stool and it is far from where the wound is,” the nurse told the inspector, according to the report.

James Callister, CareTrust’s chief investment officer, said in his deposition that CareTrust officials “review results of regulatory surveys provided to us by the tenant. We review the five-star rating.” He said, “We evaluate results of care, but we do not evaluate types of care given or how or when, no.”

Darby had been living in City Creek since 2011 after a stroke left her in a wheelchair. She needed help getting in and out of bed. From September through November 2020, Darby lost 30 pounds, her family’s lawsuit alleged. During those months, employees dropped her three times as one worker rather than the required two operated the mechanical lift, the lawsuit said.

The suit alleged City Creek failed to reposition her every two hours in bed or her wheelchair, which is the clinical standard for people at risk of bedsores, and to promptly order devices to protect her skin.

In November, the nursing home sent Darby to the hospital. A blood test found bacteria had entered her bloodstream from her feces’ touching open skin wounds, according to the lawsuit. The hospital diagnosed her with sepsis. A surgeon said she needed an operation to redirect fecal waste from her intestines but concluded she wasn’t medically stable enough for surgery, the suit said.

Darby began receiving comfort care measures and was sent back to City Creek. She died two weeks later. In court filings, CareTrust and Kalesta denied the allegations.

In a phone interview, Williams, the Kalesta co-founder, said Darby’s death occurred during the most challenging point of the covid pandemic, when California rules required any nurses testing positive for the virus to be sent home and nurses were quitting out of fear for their health. “It was the most herculean of professional efforts to secure enough staff,” he said.

While expressing sympathy for Darby and her family, he said it was “unconscionable” that personal injury lawyers sued nursing homes over care failures during “the worst of times.”

In court, CareTrust petitioned Judge Richard Miadich to dismiss it from the lawsuit before trial. “This case does not concern a property condition,” CareTrust’s lawyers wrote. “CareTrust is simply a landlord.” But the judge ruled last year a jury should decide whether CareTrust “exercised actual control over City Creek.”

The case was settled out of court a few months later. All parties declined to reveal the settlement terms.

A 67% Profit

As recently as November 2023 — four years after its acquisition — City Creek earned one star from Medicare. It was cited for failing to have the minimum nursing home staffing required by California law during five of 24 randomly selected days in 2022, according to an inspection report. Williams said in the interview that Kalesta had increased spending on nursing over the course of its ownership, including boosting wages, but that it takes a year or two to turn around a troubled nursing home. He said the home’s star rating in 2023 was dragged down by its poor inspection history from before Kalesta took over.

City Creek’s rating has climbed in the past two years, and it now has the top overall rating of five, according to Medicare. Medicare rates City Creek’s current staffing levels as average. That’s better than most nursing homes in more than 200 buildings CareTrust bought before 2025, according to a Ñî¹óåú´«Ã½Ò•îl Health News analysis of federal data. On average, CareTrust nursing homes provided a half hour less nursing care per resident per day than the national average of four hours.

In its statement to Ñî¹óåú´«Ã½Ò•îl Health News, CareTrust’s counsel Layne said the REIT worked to “identify quality operators as tenants,” and that the homes the REIT rents out have more nurses and aides than the minimum required for nursing homes by their state governments. “The operators are licensed by state regulators and retain sole responsibility for operations,” the statement said.

CareTrust, which now owns more than 500 senior housing and nursing home buildings, reported net income last year of $320 million from in rents and other revenue — a 67% profit margin. By comparison, HCA Healthcare, one of the nation’s largest for-profit hospital and health care chains, for last year.

Lesley Ann Clement, one of Darby’s lawyers, said cases like hers show the nursing home industry is wrong to complain it lacks financial resources for more staffing.

“There’s plenty of money,” Clement said. “They’re just not spending it on patient care.”

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The Office of Personnel Management 65 insurance companies to provide monthly reports with detailed medical and pharmaceutical claims data of more than 8 million people enrolled in federal health plans, Ñî¹óåú´«Ã½Ò•îl Health News reported earlier this month. The request, which could dramatically expand the personally identifiable medical information OPM can access, alarmed health ethicists, insurance company executives, and privacy advocates.

Now, OPM Director Scott Kupor has two letters on his desk — one from 16 U.S. senators and another led by Rep. Robert Garcia, the top Democrat on the House Oversight Committee — asking him to drop the agency’s proposal.

“The collection of broad, personally identifiable data regarding medical care and treatment raises concerns that OPM could target certain federal employees seeking vital health care services that the Administration disagrees with on political grounds,” the Democratic House members , citing Ñî¹óåú´«Ã½Ò•îl Health News.

The letters from congressional Democrats alone are unlikely to reverse OPM’s plans. Republicans — who control Congress and, ultimately, any oversight activities — have not weighed in on OPM’s notice.

OPM did not immediately respond to a request for comment on the letters. The agency, which said in its notice that it will use the data for oversight and to manage the federal health plans, has not publicly addressed written concerns about its proposal.

The notice, posted and sent to insurers in December, states that insurers are legally permitted to disclose “protected health information” to OPM and does not provide instructions to redact identifying information, such as names or diagnoses, from the claims.

That data could be used to implement cost-saving measures, health policy experts told Ñî¹óåú´«Ã½Ò•îl Health News earlier this month. But it would also give the Trump administration — which has laid off or fired tens of thousands of federal workers — access to a vast trove of personal information.

In the letters, Democratic lawmakers lay out a number of concerns about potential consequences of OPM’s obtaining detailed medical claims for millions of federal workers.

The — led by Adam Schiff of California and Mark Warner of Virginia — argues that OPM is not equipped to safeguard such sensitive data and that the administration could share the records across government agencies, as it has done with personal information on millions of Medicaid enrollees.

They also assert that the agency does not have a legal right to the data and that insurers’ sharing the information with OPM would “violate the core principles of the Health Insurance Portability and Accountability Act.” HIPAA requires certain organizations that maintain identifiable health information — such as hospitals and insurers — to protect it from being disclosed without patient consent. The proposal, the senators warn, threatens patients’ relationships with their clinicians, especially “sensitive disclosures regarding mental health, chronic illness, or other deeply personal conditions.”

“For these reasons, we strongly urge you to cease any further consideration of this proposal,” states the letter, which was sent to Kupor on April 19.

The American Federation of Government Employees, the largest union for federal employees, to Ñî¹óåú´«Ã½Ò•îl Health News’ reporting. The union noted in a statement from its national president, Everett Kelley, that OPM’s proposal “comes in the context of coordinated attacks on federal employees and repeated stretching of the legal boundaries for sharing sensitive personal data across government agencies.

“The question of what this administration intends to do with eight million Americans’ most private health information is not academic,” the AFGE statement read. “It is urgent.”

In an emailed statement, Kelley applauded the congressional letters.

“We are pleased that Democratic lawmakers on the Hill are just as outraged as we are over this administration’s blatant attempt to breach the privacy of millions of Americans across the country,” Kelley wrote. “We share their concerns regarding potential misuse of the information to continue illegally targeting workers and their demand for OPM to withdraw this proposal.”

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The federal government doesn’t track what happens to children after their parents are detained or deported, and state data varies. Independent news reports are scarce and likely undercount the issue. But there’s evidence that in many states some of the children are being placed in foster care. 

In Oregon, for example, there have been at least two cases in which children who were separated from their parents were placed into foster care by the state. Jake Sunderland, press secretary for the state Department of Human Services, said that before last fall, this “simply had never happened before.” 

Separation from a parent can be deeply traumatic for children and lead to a broad range of , including post-traumatic stress disorder. Some states have responded by updating their temporary guardianship laws to help immigrant parents better prepare care for their children in the event of their detention or deportation.

Lawmakers in New Jersey are to allow parents to nominate standby, or temporary, guardians in the event of death, incapacity, or debilitation. The proposal adds separation caused by federal immigration enforcement as another allowable reason. 

Nevada and California passed similar laws last year. 

Yet some parents are hesitant to participate, said Cristian Gonzalez-Perez, an attorney at Make the Road Nevada, a nonprofit that provides resources to immigrant communities. The hesitancy is out of fear that Immigration and Customs Enforcement agents could access their personal information and use it to target them for detention or deportation.

My colleagues Claudia Boyd-Barrett, Renuka Rayasam, and Amanda Seitz reported on a case in which ICE used data from the Department of Health and Human Services’ Office of Refugee Resettlement to detain parents under the impression they were reuniting with their children, highlighting the precarious situation for immigrant parents. 

Additionally, ICE detention makes it difficult to reunite parents with their children if they’ve been placed in foster care because reunification often requires court-ordered programs, said Juan Guzman, director of children’s court and guardianship at the Alliance for Children’s Rights, a legal advocacy organization in Los Angeles. Nominating a guardian is one way to ease immigrants’ feelings of helplessness when facing the threat of detention or deportation, Gonzalez-Perez said.

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But Republican lawmakers in some states think the new rules — part of the GOP’s One Big Beautiful Bill Act, signed last July by President Donald Trump — don’t go far enough.

Indiana is leading that charge, with a new law that requires applicants to prove they’ve been working or participating in a similar activity for three consecutive months to get benefits.

Meanwhile, residents in many other states will have to show they’ve been working just one month, the least cumbersome option under Trump’s signature tax-and-domestic-spending law. It instructs states to decide whether to require one, two, or three months of work history.

As in Indiana, Republican Idaho lawmakers approved a three-month requirement, and the state’s governor signed the bill into law on April 10.

The efforts, along with similar moves in Arizona, Missouri, and Kentucky, are aimed at restricting flexibility to implement the federal law at the state level.

“Normally, you would not see state legislators weighing in on these decisions,” said Lucy Dagneau, a senior official with the American Cancer Society’s advocacy arm.

The nonpartisan Congressional Budget Office estimated 18.5 million adults will be subject to the new rules, which will be enforced across 42 states and the District of Columbia. In Indiana, work rules will target about 33% of the state’s Medicaid population. The rules generally wouldn’t apply to children, people 65 or older, or people with disabilities or serious health issues.

Typically, state administrators — not lawmakers — detail how they plan to comply with new federal standards, and they often look to federal regulators for guidance. But officials at the Centers for Medicare & Medicaid Services have yet to tell states how to comply with many aspects of the sweeping budget law, leaving state lawmakers to intervene.

Gov. Mike Braun, a Republican, signed the Indiana bill into law on March 4, making his state the first to set the Medicaid work requirement at three months — the longest period allowed under the federal law.

Republican state Sen. Chris Garten introduced a bill in January, saying it was needed to “align” state law with the new federal Medicaid rules. He also pitched the bill as a way to crack down on “waste, fraud, and abuse” in public programs.

When ineligible people get enrolled, it robs “the truly vulnerable Hoosier who actually needs the help,” Garten said during a January committee hearing.

Democratic state Sen. Fady Qaddoura expressed skepticism during the hearing and questioned the necessity of the legislation. Qaddoura asked Indiana Family and Social Services Administration Secretary Mitch Roob to provide an estimate of the number of ineligible people who enrolled in Medicaid in the state.

“I think very few,” Roob replied. “It’ll never be none.”

After hearing Roob’s answer, Qaddoura said there is no evidence of a widespread problem in Indiana. He accused Republicans of using waste, fraud, and abuse as justification to deny health benefits and food aid to vulnerable Hoosiers.

Garten later called Qaddoura’s accusation a “fundamental mischaracterization” of the bill.

Republicans have said imposing these limits protects the Medicaid program’s longevity.

“We believe in a safety net for our most vulnerable, not a hammock for able-bodied adults that choose not to work,” Garten said. “By tightening these screws, we ensure that our safety net remains sustainable.”

Indiana’s Medicaid enrollment is expected to decrease because of Garten’s legislation, according to an analysis from Indiana’s nonpartisan Legislative Services Agency.

Medicaid helps keep people healthy, so they can continue to work, said Adam Mueller, executive director of the Indiana Justice Project, a nonpartisan legal advocacy organization focusing on health, housing, and food insecurity.

Mueller worries that people will struggle to prove their work history, especially those with nontraditional jobs.

“If the point is to get people engaged, the one month would do it,” Mueller said.

Ultimately, he fears the law will harm Hoosiers with the greatest need for assistance. “They’re going to get tripped up by the bureaucratic hurdles.”

An analysis by the Center on Budget and Policy Priorities predicted that work rules will and that how states choose to implement the rules will “significantly affect the number of people who lose coverage.” State policy decisions will determine just “how intense the burden is,” the left-leaning think tank found, and opting for a shorter look-back period “will enable more people to enroll.”

Lawmakers in multiple states considered limits. And the same right-leaning lobbying group, the Foundation for Government Accountability, testified in favor of these measures in Arizona, Indiana, and Missouri.

In Missouri, FGA lobbyist James Harris said the measure intends to “move people from dependency and give them back that dignity and pride of work.”

Missouri state Rep. Darin Chappell proposed requiring a three-month look-back period like the measure in Indiana. But the latest version of the bill he sponsored would require applicants to show they were working for only one month before enrolling.

Chappell, a Republican, said his initiative would encourage a “working mindset.”

Anna Meyer, owner of a small bakery in Columbia, Missouri, said the implication is that she and others on Medicaid are lazy. “I have been working since I was 15 years old,” she said. “I’m 43 now.”

Meyer, who voiced her opposition, said she previously had problems submitting information to the state Medicaid agency. She fears new reporting requirements will put her and others at risk of losing coverage, even if they meet the work rule.

She has fibromyalgia, a chronic condition that increases overall sensitivity to pain. She also has food allergies. Medicaid helps pay for medications and doctor visits that keep her healthy and allow her to keep working.

“I work very hard,” Meyer said.

In St. Louis, Jessica Norton, an OB-GYN, treats many Medicaid patients at an Affinia Healthcare clinic. She said they struggle to remain insured even though Missouri extends a full year of Medicaid coverage to eligible women after they give birth. Some of her patients are inexplicably kicked off that coverage by the time of their checkups six weeks after birth. She fears red tape from the new work requirements will make it harder to hang on to insurance, even though pregnant women and new mothers are supposed to be exempt.

Norton criticized lawmakers for the message this policy sends to vulnerable patients. They are saying, “Oh, actually, health care is a privilege, and you have to earn it,” she said.

of adults ages 19 to 64 on Medicaid already work, according to KFF. The reason many of the remaining adults on Medicaid are not working is that they are retired, serving as a caregiver, or too sick, KFF has found.

Some states are not only setting the strictest requirements but also blocking out the optional leniency built into the federal rules.

For example, states may adopt additional exemptions from work rules, such as allowing people to claim a “short-term hardship,” designed to provide continued Medicaid coverage to people with medical conditions that prevent them from working.

Missouri lawmakers are seeking a constitutional amendment to bar their state from offering such optional exemptions. But patient advocates warn these limits would harm the state’s vulnerable residents when they need coverage the most, particularly Missouri’s rural cancer patients.

Often, rural Missouri patients must travel to Kansas City or St. Louis for treatment, disrupting their ability to work, Emily Kalmer, a lobbyist for the American Cancer Society’s advocacy arm, testified at the January hearing. Recognizing this, the federal law provides certain exemptions for this kind of scenario.

But this short-term hardship exemption would be off the table in Missouri.

Time is “very important in the life of a cancer patient or a cancer survivor,” Kalmer said.

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According to new data from the Centers for Disease Control and Prevention, there were 3.6 million births in 2025, a from 2024. The fertility rate dropped to 53.1 births per 1,000 women ages 15 to 44, down 23% since 2007.

The Trump administration has said it wants to reverse this trend. President Donald Trump has called for “a new baby boom,” and aides have solicited proposals from outside advocates and policy groups ranging from baby bonuses to expanded fertility planning. The administration is also the federal government’s only dedicated family planning program: Title X.

For more than five decades, Title X has been geared — with bipartisan support — toward giving low-income women access to contraception, screening for sexually transmitted infections, and reproductive health care regardless of ability to pay. At its peak, the served more than 5 million patients a year. Title X clients have reported the program as their sole source of health care in a given year.

In early April, the Department of Health and Human Services for Title X grants for fiscal year 2027, which begins in October. The 67-page Notice of Funding Opportunity included only one mention of contraception — describing it as overprescribed, associated with negative side effects, and part of a broader “overreliance on pharmaceutical and surgical treatments.”

The grant notification reshapes the program from its traditional public health intervention efforts to focus on fertility, family formation, and reproductive health conditions such as polycystic ovary syndrome, endometriosis, low testosterone, and erectile dysfunction.

While Title X will continue to help women “achieve healthy pregnancies,” the grant document does not explicitly reference preventing unintended pregnancies — a long-standing goal of the program.

Jessica Marcella, who oversaw the Title X program as a senior official in the Biden administration, said the new funding notice amounts to a wholesale redefinition of family planning.

“What we’re seeing is trying to use our nation’s family planning as a Trojan horse for an entirely different agenda,” Marcella said, noting that Trump eliminating Title X altogether.

Birth Rates and Fertility Trends

The administration is overhauling Title X in the context of declining birth rates. But researchers who study fertility trends say the decline is driven by forces that have little to do with contraception access and that restricting it is unlikely to produce more births.

The most important factors, according to demographer Alison Gemmill of UCLA, are timing-related. “Childbearing is increasingly delayed as part of a broader shift toward later adult milestones, including stable employment, leaving the parental home, and marriage,” she said.

Most American women, she said, still complete their childbearing years with an average of two children, suggesting a shift toward smaller families rather than an increase in childlessness.

“Having children has become more contingent and more planned,” she said.

Much of the decline since 2007 reflects women postponing births rather than forgoing them.

“The average number of babies women are having in their whole lives has not fallen. It’s still more than 2.0 for women aged 45,” said Philip Cohen, a professor of sociology at the University of Maryland.

Phillip Levine, an economist at Wellesley College, said the birth rate has declined due to shifts in how women approach work, leisure, and parenting. “Efforts to reverse those patterns would be more successful if they can make childbearing more desirable, not make it harder to prevent a pregnancy,” he said.

Asked about the role of contraception in reducing maternal mortality and how the new funding notice advances that goal, HHS press secretary Emily Hilliard said in a statement: “Applicants for the 2027 Title X funding cycle will be expected to align with the administration’s stated priorities in the released Notice of Funding Opportunity. HHS, under the leadership of Secretary Kennedy and President Trump, will continue to support policies that support life, family well-being, maternal health, and address the chronic disease epidemic. HHS remains focused on improving maternal outcomes and ensuring programs are administered consistent with applicable law.”

Marcella said the new funding notice is the product of two converging forces: the Make America Healthy Again movement, with its skepticism of conventional medicine and emphasis on lifestyle and behavioral interventions, and a pronatalist agenda that seeks to boost birth rates by steering policy toward family formation.

The document’s language reflects both: It repeatedly invokes “optimal health” and “chronic disease” while sidelining the contraceptive services that have defined Title X for .

Clare Coleman, president and CEO of the National Family Planning & Reproductive Health Association, which represents health professionals focused on family planning, said tying Title X to birth-rate goals replaces individual decision-making with a government objective. The program “is designed to facilitate access to family planning services, including services to achieve and prevent pregnancy,” she said.

Title X’s New Focus

The administration’s changes have been welcomed on the right.

Emma Waters, a senior policy analyst at the conservative Heritage Foundation, who has advocated for what she calls “restorative reproductive medicine,” said the new funding notice reflects overdue attention to neglected aspects of women’s health.

“I was particularly encouraged to see language that spoke to the delays in diagnosis for conditions like endometriosis, the need for women to practically understand how their cycle and fertility works, and to ensure that real root-cause was promoted through Title X,” Waters said.

She described the notice as an expansion, not a narrowing, of the program’s mission: “I see this iteration of Title X as the fulfillment of its purpose. The goal was never just ‘more contraception’ but a wholesale empowerment of women to govern their own fertility.”

Waters also argued that untreated reproductive health problems may contribute to lower birth rates.

“One of the interesting aspects of this debate, and one that is often overlooked, is the degree to which painful and unaddressed reproductive health problems may suppress or create ambivalence around a woman’s desire to have kids,” she said, pointing to endometriosis.

An estimated of reproductive age have endometriosis, and of those, . Scientifically speaking, the relationship is an association, not a proven cause. Women aren’t screened for endometriosis if they don’t have symptoms, and the condition may be more prevalent than is recognized. Researchers still do not fully understand why some women with endometriosis struggle to conceive while others do not, and treating the disease does not reliably restore fertility.

Infertility rates in the U.S., meanwhile, have not risen. An found them essentially flat between 1995 and 2019, even as the national birth rate fell sharply — a divergence that points away from untreated reproductive disease as an explanation.

Meanwhile, in February, the American College of Obstetricians and Gynecologists enabling earlier diagnosis of endometriosis without surgery, a step toward addressing the delays Waters described. But the first-line treatment ACOG recommends is hormonal therapy, part of the same category of care the funding notice dismisses as part of an “overreliance on pharmaceutical and surgical treatments.” The effect, reproductive health experts say, is a contradiction: Title X is now prioritizing diagnosis of endometriosis while deemphasizing the drugs clinicians use to treat it.

Treatments that have been shown to improve fertility in women with endometriosis, such as laparoscopic surgery and in vitro fertilization, are . When President Richard Nixon signed Title X into law in 1970, as a way to expand access to family planning services — helping women determine the number and spacing of their children by making contraception and related preventive care more widely available, particularly for those who could not afford it. , not Title X, is the primary government health insurance program covering health care for low-income women, but, like many commercial insurance plans, it .

Many of the conditions prioritized in the funding notice deserve attention, said Liz Romer, a former chief clinical adviser for the HHS Office of Population Affairs who helped write updated guidelines for the family planning program. But they fall outside the scope of what Title X can realistically provide.

“There’s not even enough funding to support the core premise of contraception,” Romer said. “And so, if you want to expand Title X funding, you can expand the scope, but you can’t move away from the foundation.”

The emergence of an anticontraception ideology within federal health policy is striking, she said, given how broadly the public supports access to birth control. Eight in 10 women of childbearing age surveyed by KFF in 2024 reported having in the previous 12 months.

Laura Lindberg, director of the Concentration in Sexual and Reproductive Health, Rights and Justice at Rutgers School of Public Health, said, “If contraception is sidelined in Title X, it won’t just change language on paper but will show up as fewer options and more barriers for patients.” Funding could move away from providers who offer a full range of contraceptive care, she added, “toward organizations that are ideologically opposed to contraception and don’t deliver the same standard of health care services.”

The Stakes Are High

The United States already has one of the highest maternal mortality rates among wealthy nations — as of 2024. According to the CDC, in the U.S. may be preventable. Medical research shows that pregnancy carries substantially higher risks of blood clots, stroke, and cardiovascular complications than hormonal contraception.

And since the Supreme Court’s Dobbs decision in 2022, which overturned the constitutional right to abortion established by Roe v. Wade, access to abortion has been significantly curtailed across much of the country. While national abortion numbers have risen, driven largely by telehealth and interstate access, research shows births have increased in states with bans, with an estimated , disproportionately among young women and women of color.

Dr. Christine Dehlendorf, who directs the Person-Centered Reproductive Health Program at the University of California-San Francisco, said “there is absolutely no evidence for any positive outcome of restricting access to contraception.” Restrictions would instead increase demand for abortion care and make it harder for women to prevent high-risk pregnancies.

Since Trump returned to office, more than a dozen Title X grantees have had their grants frozen, forcing some health centers to stop delivering services, lay off staff, or close. During the first Trump administration, regulatory changes led to a decline in Title X participation from more than . The program grew slowly under the Biden administration, reaching about 3 million clients, before the current round of disruptions began.

The second Trump administration’s overhaul of the program, Marcella said, “directly undermines the public health intent of our nation’s family planning program and will potentially exclude millions of individuals from getting the care they have relied on for decades. It’s bad policy.”

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It started building over the summer, fed by news of across Southern California, Trump administration plans to with Immigration and Customs Enforcement, and the passage of state and federal restrictions on immigrant Medicaid eligibility. Then in November, the federal government released a new that, if enacted, could block certain immigrants from obtaining permanent legal residency if they or family members have used public benefits, including Medicaid.

Many of González’ clients and their children, often U.S. citizens, still qualify for California’s Medicaid program, known as Medi-Cal, which provides health coverage to over 14 million residents with low incomes or disabilities. But increasingly, they don’t want to enroll or renew their coverage, she said.

“Many people don’t want to apply,” she said. “There are people who say they don’t even want to go outside and water their plants.”

An analysis by Ñî¹óåú´«Ã½Ò•îl Health News found that, from June to December, the latest month for which figures are available, almost 100,000 immigrants without legal status left Medi-Cal, representing about a quarter of all disenrollments in that time frame, even though this group makes up only about 11% of Medi-Cal enrollees.

It marks a reversal in a steady rise in enrollment among immigrants without legal status in California. Until July, sign-ups among this group had risen every month since the state opened Medi-Cal to all low-income residents regardless of immigration status in January 2024.

Tessa Outhyse, a spokesperson for the California Department of Health Care Services, which oversees Medi-Cal, said the enrollment declines can be mostly attributed to the fact that the government restarted eligibility checks that were suspended during the covid-19 pandemic. Indeed, overall Medi-Cal enrollment peaked in May 2023, and has since declined by about 1.6 million.

But two researchers, Leonardo Cuello at Georgetown University’s Center for Children and Families and Susan Babey at the UCLA Center for Health Policy Research, pointed out that California and most other states had fully resumed eligibility checks . In other words, that wouldn’t explain why enrollment has fallen precipitously in the last 12 months or so.

What has changed, Cuello said, is that the federal government passed the One Big Beautiful Bill Act, and executive orders added more changes that are propelling disenrollment.

Surveys Offer Clues

found immigrant adults nationally, especially parents, to be increasingly avoiding government programs that help pay for food, housing, or health care, to avoid drawing attention to their or a family member’s immigration status. That included lawfully present residents and naturalized citizens. Parental avoidance of these programs is particularly concerning, Cuello said, because about 1 in 4 children in the U.S. have an immigrant parent, even though most of those children were born in the U.S.

Cuello suspects that may help explain a nationwide enrollment drop of almost 3% in Medicaid and the Children’s Health Insurance Program during the first 10 months of last year, including a 5.6% drop in enrollment among California children, according to .

During the first Trump administration, the president broadened public charge criteria to allow consideration of Medicaid use and food and housing assistance. That led many citizen children and other household members to they were eligible for. Some the programs even after several courts blocked implementation and Democratic President Joe Biden rescinded the rule.

“It caused a high level of confusion,” said Louise McCarthy, president and CEO of the Community Clinic Association of Los Angeles County, which represents about 70 health centers in the Los Angeles area. “Community health center staff are still working to undo the effects of the first rule.”

Projected Savings

Currently, only people reliant on cash assistance programs or long-term, government-funded institutionalized care may be considered a public charge risk when applying for a visa to enter the country or to become a legal permanent resident. But under the Trump administration’s proposed rule, Medicaid and other noncash programs could be used to determine whether an immigrant is likely to become dependent on the government. Immigration officers would also have more discretion to label people a public charge.

The Department of Homeland Security’s proposal says the changes are needed because the existing rules hamper the agency’s ability to make decisions about an immigrant’s risk of becoming reliant on government resources. A public comment period for the proposal ended in December.

DHS did not respond to a request about when it plans to make a final decision on the rule. The change would “align with long-standing policy that aliens in the United States should be self-reliant and government benefits should not incentivize immigration,” the proposal states.

The agency projected the change could save federal and state governments almost $9 billion annually from people disenrolling from or forgoing enrollment in public benefit programs.

A of the proposed rule estimated it could result in 1.3 to 4 million people disenrolling from Medicaid or CHIP, including as many as 1.8 million citizen children.

“It’s clearly being weaponized to create fear and anxiety,” said Benyamin Chao, supervising health and public benefits policy manager at the California Immigrant Policy Center. He called the proposal part of an “assault on lawfully present immigrants and U.S. citizens who are family members, and just the general community.”

Public charge fears are expected to decrease enrollment also in anti-hunger programs, such as the Supplemental Nutrition Assistance Program, known in California as CalFresh. Mark Lowry, who heads the Orange County Food Bank, said that that — along with disenrollment related to the One Big Beautiful Bill Act — could overwhelm food pantries, since federal nutrition programs account for the vast majority of food aid.

“There’s no way that the emergency food system has the capacity or resources to address those needs,” he said.

Health Care Needs

Fear of Medi-Cal enrollment doesn’t extend to all immigrants. Juana Zaragoza manages a program in Oxnard that helps mostly Indigenous Mexican farmworkers sign up for Medi-Cal. Overall enrollment and reenrollment has remained steady over the past few months, she said. Neither she nor the community members she serves know much about the public charge proposal, she added.

Often, any concerns they have are outweighed by an immediate need for health care.

“We encounter a lot of people who are balancing: what benefits me now and what benefits me later,” she said. “Some just want to cover their needs in the moment.”

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The federal government doesn’t track how many children have entered foster care because of immigration enforcement actions, leaving it unclear how often it happens. In Oregon, as of February two children had been placed in foster care after being separated from their parents in immigration detention cases, according to Jake Sunderland, a spokesperson for the Oregon Department of Human Services.

“Before fall 2025, this simply had never happened before,” Sunderland said.

As of mid-February, nearly by Immigration and Customs Enforcement. The record 73,000 people in detention in January represented an compared with one year before. According to , parents of 11,000 children who are U.S. citizens were detained from the beginning of Trump’s term through August.

The news outlet NOTUS that at least 32 children of detained or deported parents had been placed in foster care in seven states.

Sandy Santana, executive director of Children’s Rights, a legal advocacy organization, said he thinks the actual number is much higher.

“That, to us, seems really, really low,” he said.

Separation from a parent is deeply traumatic for children and can lead to , including post-traumatic stress disorder. Prolonged, intense stress can lead to more-frequent infections in children and developmental issues. That “toxic stress” is also associated with responsible for learning and memory, according to KFF.

, and amended existing laws during Trump’s first term to allow guardians to be granted temporary parental rights for immigration enforcement reasons. Now the enforcement surge that began after Trump returned to office last year has prompted a new wave of state responses.

In New Jersey, lawmakers are considering to amend a state law that allows parents to nominate standby, or temporary, guardians in the cases of death, incapacity, or debilitation. The bill would add separation due to federal immigration enforcement as another allowable reason.

Nevada and California passed laws last year to protect families separated by immigration enforcement actions. California’s law, called the , allows parents to nominate guardians and share custodial rights, instead of having them suspended, while they’re detained. They regain their full parental rights if they are released and are able to reunite with their children.

There are significant legal barriers to reunification once a child is placed in state custody, said Juan Guzman, director of children’s court and guardianship at the Alliance for Children’s Rights, a legal advocacy organization in Los Angeles.

If a parent’s child is placed in foster care and the parent cannot participate in required court proceedings because they are in detention or have been deported, it’s less likely they will be able to reunite with their child, Guzman said.

are U.S. citizens who live with a parent or family member who does not have legal immigration status, according to research from the Brookings Institution, a Washington, D.C.-based think tank. Within that group, 2.6 million children have two parents lacking legal status.

Santana said he expects the number of family separation cases to grow as the Trump administration continues its immigration enforcement campaign, putting more children at risk of being placed in foster care.

the agency to make efforts to facilitate detained parents’ participation in family court, child welfare, or guardianship proceedings, but Santana said it’s uncertain whether ICE is complying with those rules.

ICE officials did not respond to requests for comment for this report.

Before the change in California’s law, the only way a parent could share custodial rights with another guardian was if the parent was terminally ill, Guzman said.

If parents create a preparedness plan and identify an individual to assume guardianship of their children, the state child welfare agency can begin the process of placing the children with that individual without opening a formal foster care case, he added.

While Nevada lawmakers expanded an existing guardianship law last year to include immigration enforcement, the measure requires the parents to take the additional step of filing notarized paperwork with the secretary of state’s office, said Cristian Gonzalez-Perez, an attorney at Make the Road Nevada, a nonprofit that provides resources to immigrant communities.

Gonzalez-Perez said some immigrants are still hesitant to fill out government forms, out of fear that ICE might access their information and target them. He reassures community members that the state forms are secure and can be accessed only by hospitals and courts.

The Trump administration has taken through the Centers for Medicare & Medicaid Services, the IRS, the Supplemental Nutrition Assistance Program, the Department of Housing and Urban Development, and other entities.

Gonzalez-Perez and Guzman said that not enough immigrant parents know their rights. Nominating a temporary guardian and creating a plan for their families is one way they can prevent feelings of helplessness, Gonzalez-Perez said.

“Folks don’t want to talk about it, right?” Guzman said. “The parent having to speak to a child about the possibility of separation, it’s scary. It’s not something anybody wants to do.”

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