The , the public health insurance program that pairs state and federal money. Federal officials have announced unprecedented actions in Minnesota this year, declaring they could withhold over $2 billion in payments slated for the state and claw back nearly $260 million from last year.

The actions in Minnesota came as part of the administration’s declared crackdown on fraud, but critics have likened them to using a bludgeon instead of a scalpel, probably harming patients who rely on Medicaid for care but are not responsible for fraud in the program.

“It’s going to hurt a lot of people if they end up going through with this,” said Sumukha Terakanambi, a 27-year-old who has Duchenne muscular dystrophy and works as a public policy consultant with the Minnesota Council on Disability.

“Of course we support going after fraud,” Terakanambi said, but “this overly aggressive action is missing the point. It’s not punishing fraudsters. It’s punishing the people.”

Longtime Medicaid observers also doubt the federal actions will achieve their purported objective. , a senior managing director with the consulting firm Manatt, that actions of this magnitude by the federal government are unprecedented, partly because punitive measures against states have “really never been an effective way to address fraud.”

Meanwhile, fraud prosecutions as the U.S. attorney’s office there grapples with the exodus of nearly half its attorneys and a surge in cases from the Trump administration’s immigration crackdown.

Despite these concerns, Centers for Medicare & Medicaid Services head Mehmet Oz said the techniques the federal government is using in Minnesota could be applied to other states, and he has launched social media campaigns alleging high-dollar public benefit fraud��in , , , and . And a February release of by the Trump administration’s Department of Government Efficiency appears to be part of a campaign to paint the program as riddled by fraud, Guyer said.

, a research professor at Georgetown University’s Center for Children and Families, said that campaign by the administration seems particularly focused on services designed to keep people with disabilities out of institutions, and he described withholding $2 billion from Minnesota’s Medicaid program as “.”

A ‘Political Football’

Scrutiny of Minnesota’s public benefit programs began early in the Biden administration, years before the most recent investigations. The spotlight on the state’s Medicaid system grew after FBI raids in December 2024.

The following May, an into Medicaid housing stabilization services in Minnesota prompted further scrutiny from federal prosecutors, and from Gov. Tim Walz.

Under the Democratic governor, the state launched investigations into 85 autism providers, ordered a third-party audit of 14 types of Medicaid services deemed to be “high-risk” for fraud, and delayed payments for those services for up to 90 days. Many of the services are ones people with disabilities receive at home, making them more difficult to monitor. ��

Terakanambi worried the state’s “heavy-handed approach” would destabilize the entire home care system. While his own care was not disrupted — his parents provide the 10 hours of daily personal care he qualifies for through Medicaid — other Minnesotans with disabilities have said they experienced interruptions and .

In December, one man was after losing his in-home care services amid the crackdown.

“We’re losing sight of the people that have done nothing wrong, that rely on these supports and services to live in the community,” said Sue Schettle, chief executive of , a Minnesota nonprofit that represents organizations supporting people with disabilities. “It becomes a political football.”

Schettle said she took her concerns about the crackdown to state officials, who have since met routinely with her and other advocates. The subsequent federal actions, however, have left her “shell-shocked,” she said.

The ‘Nuclear Option’

In December, a , with help from state Republicans, supercharged the issue in Minnesota, alleging widespread fraud in child care centers owned by members of the Somali community. A follow-up state investigation of the child care centers that were featured in the video determined that all were “.”

On Jan. 6, CMS’ Oz sent Walz a letter alleging Minnesota’s Medicaid program was out of compliance with federal rules on fraud, waste, and abuse, setting the stage for the Trump administration’s move to withhold over $2 billion in federal Medicaid funds to Minnesota this year, about 18% of what the state received the year before.

Minnesota is appealing.

The Republican-aligned Paragon Health Institute, a think tank that recently published a calling for similar enforcement actions across the country, applauded the federal moves.

“That will spur states to take necessary action, thus ensuring that Medicaid funds go to those who are truly eligible,” said , a legal research analyst who co-authored the brief.

Georgetown’s Schneider questioned the necessity and effectiveness of withholding the money.

“I don’t see any relationship between that and actually reducing fraud against the Minnesota Medicaid program, given the state has already taken a lot of action,” he said.

In late February, Oz went further, announcing that on top of withholding $2 billion in future payments to Minnesota, the administration was in federal Medicaid payments to the state.

“We have notified the state that we will give them the money, but we are going to hold it and only release it after they propose and act on a comprehensive corrective action plan to solve the problem,” Oz said at with Vice President JD Vance.

Minnesota the deferment in court.

“We’re waiting for feedback from CMS on our corrective action plan, which is why we were surprised and confused when Dr. Oz said in a news conference with the vice president last week that we needed to provide one,” Minnesota Medicaid director John Connolly said at a March 3 news briefing.

‘Another Minnesota’

Oz and Vance both said during the February news conference that they are not specifically targeting Democratic-led states. Oz noted Florida has a “big fraud problem” and in mid-March sent a letter to state officials with a list of questions about their Medicaid program. Until then, the letters and most of Oz’s social media videos had been limited to California, Maine, and New York, all led by Democrats.

“We might have another Minnesota on our hands,” Oz said in posted the same day as sent to Maine Gov. Janet Mills, a Democrat, requesting information on how the state was addressing Medicaid fraud.

“And if we’re not satisfied with their progress, we reserve the right to cut off payments entirely,” Oz said in the video.

The video and letter were prompted by a in Maine that found the state had made at least $45.6 million in improper Medicaid payments. Similar audits in , , and had comparable findings.

In , Mills called Oz’s letter a “pretense to send ICE and other weaponized federal agents into states led by Democrats.”

CMS spokesperson Chris Krepich said the agency does not take funding actions lightly. “The focus is on strengthening oversight, improving accountability, and ensuring that vulnerable patients receive the services they are entitled to,” Krepich said.

But Terakanambi said it’s not difficult to see how federal actions like those in Minnesota could put services in jeopardy. The amount of money Minnesota could lose from the CMS actions announced this year is already equivalent to about two-thirds of the state’s rainy-day fund.

Many states are looking to reduce or even eliminate funding for home care services over much smaller budget shortfalls. And further cuts are anticipated, with congressional Republicans’ One Big Beautiful Bill Act, signed into law last year, expected to reduce federal Medicaid spending by more than $900 billion over the next decade.

“People will die,” Terakanambi said. “People will lose critical supports and will no longer be able to participate in their community the way they want to.”

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Services at risk include the 24/7 care that allows a 39-year-old with cerebral palsy to live independently; the in-home caregiving that lets a 26-year-old with brain damage from a hemorrhage at birth stay in his family home; and private duty nursing for a 19-year-old with cerebral palsy who has qualified for hospice care for complications including pulmonary decline from a spinal cord injury.

Concerns for such care arose when Idaho Gov. Brad Little, a Republican, proposed cutting $22 million from Medicaid — the joint state-federal health insurance program for people with low incomes or disabilities — to balance the state budget. Home- and community-based services such as caregiving, nursing, and residential rehabilitation are optional under Medicaid, and Little for the cuts.

Across the country, people with disabilities and their families are confronting similar plans to cut Medicaid as states grapple with budget challenges compounded by congressional Republicans’ One Big Beautiful Bill Act, which is expected to reduce federal spending on Medicaid by nearly $1 trillion over the next decade.

A four-hour town hall on the proposal in Idaho drew to the state capitol. Colorado lawmakers heard from concerned residents before pausing a pay cut for family caregivers. In Missouri, families raised alarms about a to services for people with disabilities.

“We saw this coming. We’ve tried to educate members of Congress,” said Kim Musheno, the senior director of Medicaid policy at The Arc, a national disability rights organization.

“Whenever there’s pressure on state budgets like those that are caused by the One Big Beautiful Bill Act, they go after Medicaid, and then they go after optional services,” Musheno said.

Many cuts included in the GOP bill, which President Donald Trump signed into law in July, haven’t yet taken effect, but the law is already impacting state budgets, particularly in states that align their tax rules with federal regulations.

Conforming to the federal law is expected to cost Idaho this year. Colorado lawmakers were called into a special session last year to address a created by the law. Those shortfalls — combined with national trends of increased Medicaid costs, , and further tax cuts passed by some state legislatures — are putting pressure on Medicaid programs.

Still, Musheno said she was surprised by how quickly Idaho targeted services for people with disabilities. “I couldn’t believe it.”

Little had already ordered Medicaid cuts last year as part of an effort to address a budget shortfall after years of and increasing program costs. That led to a in September for medical providers’ work with Medicaid patients. Little’s new proposed would be on top of those previous rate cuts.

“We were told by the legislature that they want to save some money in Medicaid, and so what we put together was a list of seven different options that were there,” Little said at a Feb. 17 press event. “There’s only so many levers we can pull in the Medicaid area that doesn’t jeopardize our funding.”

‘We Just Hold Our Breath’

Amber Grant said any further cuts for the nursing agency that provides care for her 19-year-old son, Matty, could be catastrophic.

He was born with brain damage and cerebral palsy before suffering a spinal cord injury when he was 10. In 2024, he briefly received hospice care before the family decided to work with a palliative care team to help him live out his life.

Through Medicaid, Matty qualifies for 120 hours of in-home private duty nursing care per week. But because of a nursing shortage, he typically receives only about half of that care, and Grant said it would get worse if the nursing agency is subjected to any more reductions.

“The reality is that any of us at any point in time could become disabled,” Grant said. “What kind of quality of care would we want?”

The potential cuts run even deeper for Grant’s family. Through another optional in-home Medicaid program, she and her husband, Jason, are both eligible to be paid for caring for their older son, Luke. The 24-year-old has autism, epilepsy, and an autoimmune condition and requires supervision 24 hours a day.

Jason primarily works as a self-employed remodeler, but Grant’s only income is the $21 an hour she gets to care for Luke. But she can be compensated only for the time she has him one-on-one, meaning when someone else is taking care of Matty, such as Jason or his nurses.

Grant said keeping up with the family’s house payments will be nearly impossible if they lose that income, and she said it seems like only a matter of time before some or all of her sons’ in-home care is disrupted. Idaho is in federal Medicaid funding over the next decade as a result of the One Big Beautiful Bill Act, according to �鶹Ů��, a national health information nonprofit that includes �鶹Ů�� Health News.

“We just hold our breath every legislative session,” Grant said. “I feel like I’m always trying to prove their worth, to prove their value, and it’s exhausting.”

State Rep. Josh Tanner, a Republican who co-chairs the legislature’s powerful budget committee, said he opposed cutting home- and community-based services, but it was up to a separate committee and workgroup to finalize cuts to the Medicaid program.

Medicaid covers . , the federal government picked up 80% of the state program’s $3.6 billion tab in 2023. Tanner said tapping the state’s $1.3 billion in reserves to fill the $22 million gap was a nonstarter.

“We don’t really have an overall revenue problem in the state right now,” Tanner said, “but we do have a spending problem, and part of that has been Medicaid in general.”

Senate Minority Leader Melissa Wintrow, a Democrat on the budget committee, disagreed, pointing instead to five years of tax cuts passed by the Republican supermajority that have in lost revenue, including last year.

“What we need to do is restore the revenue that we cut and put it back and admit the mistake and stop harming people and the very services that Idahoans depend on,” Wintrow said.

‘It Keeps Me Awake at Night’

It’s also unclear whether cuts to community-based care would save Idaho money, something Tanner acknowledged. For optional Medicaid programs to be approved by the federal government, states must demonstrate that they are cheaper than existing alternatives, such as being cared for in a nursing home. Cutting community-based care would probably push many people with disabilities into more costly institutional care.

That’s what Toni Belknap-Brinegar fears for her son Antahn Brinegar.

A brain hemorrhage at birth left Antahn, now 26, with severe brain damage, physical and developmental issues, and a seizure disorder. Belknap-Brinegar is his primary caregiver, but she realized when Antahn was 8 or 9 that she wasn’t physically capable of caring for her growing son. Now 200 pounds, he has two paid in-home caregivers, Belknap-Brinegar said, both single mothers whose own livelihoods may be in the balance amid talks of cuts.

Nursing homes aren’t equipped to properly care for Antahn, Belknap-Brinegar said. He needs to be constantly monitored for seizures. He can’t communicate his needs well, for example when he has to go to the bathroom.

“Without the services that he has and the care that he gets now, he would end up in a care center, and frankly, he would die,” Belknap-Brinegar said.

While home and community-based services are technically optional parts of Medicaid, a required states to provide them to people with disabilities when appropriate. A Justice Department investigation in the waning days of the Biden administration found that Idaho was into nursing homes, in violation of that ruling. The Trump administration is attempting to slash access to the lawyers who help ensure those rules are followed.

Documents also show the state agency that oversees Medicaid does not think the state has enough space in its residential facilities to care for all the people whose home- and community-based services could be cut under the governor’s plan.

That’s Ned Fowkes’ worry for his 39-year-old daughter, Eva.

A brain bleed when she was an infant left Eva with severe cerebral palsy and significant developmental disabilities. Although Eva is unable to speak, she has a “wonderful awareness,” Fowkes said, and is able to communicate through her expressions and convey her preferences.

After being cared for by her parents for 21 years, Eva was eager for the chance to move into a supported living home, where she could get round-the-clock care while living with another person with disabilities.

“Like most 21-year-olds, she probably wanted to hit the road and not be under the roof of her parents anymore,” Fowkes recalled. “She’s always been courageous in that sense.”

Fowkes and his wife visit at least three times a week, but at 79 and 76, they are no longer able to provide their daughter’s direct care.

The staff at Eva’s home already barely make a living wage, Fowkes said. Cuts to the program that pays for her care would trigger more turnover — or, worse, shutter the agency that staffs the home.

“I don’t know what we would do,” Fowkes said. “Eventually we’d lose our home. We would be bankrupt. Where would Eva go? Where would her roommate go? Who would care for them?”

“It keeps me awake at night,” he said. “Believe me.”

�鶹Ů�� Health News’ Hayat Norimine contributed to this report.

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O bien ya terminaste un par de semanas de rehabilitación. ¿Podrás manejar una rutina complicada de medicamentos, además de hacer las compras y cocinar?

Tal vez te caíste en la ducha y ahora tu familia quiere que consigas ayuda para bañarte y vestirte.

Por supuesto, hay centros que brindan ese tipo de asistencia, pero la mayoría de las personas mayores no quiere irse a vivir a esos lugares. Quieren quedarse en casa.

Y ahí está el problema.

Cuando las personas mayores comienzan a tener dificultades con las actividades diarias, ya sea porque se han vuelto más frágiles, por el avance de enfermedades crónicas o por la pérdida de una pareja o acompañante, la mayoría no quiere mudarse.

Desde hace décadas, el mayor tiempo posible.

Eso significa que necesitan cuidado en casa, ya sea proporcionado por familiares, amigos, cuidadores pagos o por una combinación de ellos. Pero el cuidado remunerado en casa es una parte especialmente afectada del sistema de atención a largo plazo, que está atravesando una escasez de personal cada vez más grave, justo cuando la población envejecida impulsa una demanda creciente.

“Es una crisis”, definió la doctora Madeline Sterling, médica de atención primaria en Weill Cornell Medicine y directora de la Iniciativa sobre el Trabajo de Cuidados en el Hogar () de la Universidad de Cornell. “No funciona bien para quienes forman parte del sistema”, ya sean pacientes (que también pueden ser personas jóvenes con discapacidades), familiares o cuidadores en el hogar.

“No se trata de algo que vaya a pasar en una década”, señaló Steven Landers, director ejecutivo de la Alianza Nacional para la Atención en el Hogar (National Alliance for Care at Home), una organización del sector. “Haz una búsqueda en Indeed.com en cualquier ciudad de Estados Unidos para encontrar asistentes de atención en el hogar, y verás tantas vacantes que te vas a quedar con la boca abierta”.

Pero aun en ese panorama desalentador, hay algunas alternativas que muestran resultados prometedores al mejorar tanto las condiciones laborales en el sector como la atención a los pacientes. Y están creciendo.

Un poco de contexto. Desde hace años, investigadores y administradores del sistema de atención a personas mayores vienen advirtiendo sobre esta crisis inminente. El cuidado en el hogar ya es una de las ocupaciones de más rápido crecimiento en el país: el año pasado había 3,2 millones de asistentes de salud en el hogar y de cuidado personal, frente a 1,4 millones una década atrás, , una organización de investigación y defensa del sector.

Así y todo, , el país necesitará unos 740.000 trabajadores adicionales de cuidado en el hogar en los próximos diez años, y reclutarlos no será tarea fácil. El costo para los consumidores es alto: en promedio, $34 por hora por uno de estos asistentes el año pasado, según la , con grandes diferencias según la región.

Pero los trabajadores reciben, en promedio, menos de $17 por hora.

Siguen siendo empleos inestables y mal remunerados. De una fuerza laboral compuesta en su mayoría por mujeres, aproximadamente un tercio inmigrantes, el 40% vive en hogares de bajos ingresos y la mayoría recibe algún tipo de asistencia pública.

Incluso cuando las agencias que los contratan ofrecen seguro médico y los trabajadores reúnen los requisitos para tenerlo, muchos no pueden pagar las primas.

No es sorprendente que el índice de rotación de personal alcance el 80% anual, , una organización sin fines de lucro que promueve cooperativas.

Pero no en todos lados. Una innovación que aún es pequeña pero está en expansión son las cooperativas de cuidado en el hogar que pertenecen a los propios trabajadores. La primera y más grande, Cooperative Home Care Associates en el Bronx, comenzó en 1985 y actualmente emplea a unos 1.600 cuidadores. The ICA Group contabiliza ahora 26 negocios de cuidado en el hogar propiedad de trabajadores en todo el país.

“Estas cooperativas están logrando resultados excepcionales”, dijo el doctor Geoffrey Gusoff, médico de familia e investigador en servicios de salud en la Universidad de California en Los Ángeles. “Tienen la mitad de la rotación que las agencias tradicionales, mantienen a los clientes el doble de tiempo y pagan $2 más por hora” a sus copropietarios.

Cuando Gusoff y sus colegas entrevistaron a miembros de cooperativas para publicado en JAMA Network Open, “esperábamos escuchar más sobre la compensación”, comentó. “Pero la respuesta más común fue: ‘tengo más voz’” en cuanto a las condiciones laborales, la atención a los pacientes y la gestión de la cooperativa.

“Los trabajadores dicen que se sienten más respetados”, señaló Gusoff.

A través de una iniciativa que ofrece financiamiento, asesoramiento empresarial y asistencia técnica, The ICA Group planea aumentar el número de cooperativas a 50 en los próximos cinco años, y a 100 para 2040.

Otra alternativa que está ganando terreno son los registros que permiten que trabajadores de cuidado en el hogar y personas que necesitan asistencia se conecten directamente, a menudo sin involucrar a agencias que supervisan y hacen verificación de antecedentes, pero que también se quedan con aproximadamente la mitad del pago que hacen los consumidores.

Uno de los registros más grandes, , conecta a trabajadores y clientes en Oregon y Washington. Establecido a través de acuerdos con el Service Employees International Union, el sindicato de salud más grande del país, Carina atiende a 40.000 proveedores y 25.000 clientes. (Según PHI, solo alrededor del 10% de los trabajadores de cuidado en el hogar están sindicalizados).

Carina funciona como una especie de “bolsa de trabajo digital” gratuita, explicó Nidhi Mirani, su directora ejecutiva. Salvo en el área de Seattle, solo atiende a personas que reciben cuidado a través de Medicaid, el principal financiador de atención en el hogar. Las agencias estatales se encargan del papeleo y de supervisar las verificaciones de antecedentes.

Las tarifas por hora que se pagan a proveedores independientes encontrados a través de Carina, establecidas por contratos sindicales, suelen ser más bajas que las que cobran las agencias. Pero los trabajadores ganan desde $20 por hora, además de recibir seguro médico, días de licencia paga y, en algunos casos, beneficios de jubilación.

pueden ser gestionados por los estados, como ocurre en Massachusetts y Wisconsin, o por plataformas como , que está disponible en cuatro estados. “La gente busca tener afinidad con la persona que entra a su casa”, dijo Mirani. “Y los proveedores individuales también pueden elegir a sus clientes. Funciona en ambas direcciones”.

Por último, estudios recientes indican que una mejor capacitación para los trabajadores de atención en el hogar puede tener un impacto positivo.

“Estos pacientes tienen afecciones complejas”, dijo la doctora Sterling. Los trabajadores, al tomar la presión arterial, preparar alimentos y ayudar a que sus clientes se mantengan activos, pueden detectar síntomas preocupantes apenas surgen.

Su equipo llevó a cabo un ensayo clínico con —“la principal causa de hospitalización entre los beneficiarios de Medicare”, señaló— en el que se midieron los efectos de un módulo virtual de capacitación de 90 minutos sobre los síntomas y el manejo de esta enfermedad.

“Hinchazón en las piernas. Falta de aire. Son las primeras señales de que la enfermedad no está bajo control”, explicó Sterling.

En el estudio, que incluyó a 102 trabajadores de VNS Health, una gran organización sin fines de lucro en Nueva York, la capacitación demostró mejorar tanto el conocimiento como la confianza del personal para atender a pacientes con insuficiencia cardíaca.

Además, cuando los asistentes recibieron una aplicación móvil para comunicarse con sus supervisores, hicieron menos llamadas al 911 y los pacientes tuvieron menos visitas a salas de emergencia.

Iniciativas a pequeña escala como los registros, cooperativas y programas de capacitación no resuelven el principal problema del cuidado en el hogar: el costo.

Medicaid cubre los cuidados en el hogar para adultos mayores de bajos ingresos con escasos recursos, aunque el nuevo presupuesto del gobierno de Trump en más de $900.000 millones durante la próxima década. En teoría, las personas con más recursos pueden pagar de su bolsillo.

Pero “las familias jubiladas de clase media terminan usando todos sus recursos y básicamente se empobrecen para poder calificar para Medicaid, o simplemente no reciben cuidados”, dijo el doctor Landers. Opciones como la residencia asistida o las residencias de mayores son aún más costosas.

Estados Unidos nunca ha asumido el compromiso de financiar el cuidado a largo plazo para las personas de clase media, y parece poco probable que lo haga esta administración.

Aun así, los ahorros derivados de estas innovaciones podrían reducir costos y ayudar a ampliar el acceso a esta atención a través de programas federales o estatales. Hay varias pruebas y programas piloto en curso.

Los trabajadores de cuidado en el hogar “tienen una comprensión muy profunda de las afecciones de los pacientes”, expresó la doctora Sterling. “Capacitarlos y darles herramientas tecnológicas demuestra que, si queremos que los pacientes se queden en casa, esta es una forma de lograrlo con la fuerza laboral que ya tenemos”.

The New Old Age se produce en colaboración con .

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Or, you’ve completed a couple of weeks in rehab. Can you handle your complicated medication regimen, along with shopping and cooking?

Perhaps you fell in the shower, and now your family wants you to arrange help with bathing and getting dressed.

There are facilities that provide such help, of course, but most older people don’t want to go there. They want to stay at home; that’s the problem.

When older people struggle with daily activities because they have grown frail, because their chronic illnesses have mounted, or because they have lost a spouse or companion, most don’t want to move. For decades, surveys have shown that for as long as possible.

That means they need home care, either from family and friends, paid caregivers, or both. But paid home care represents an especially strained sector of the long-term care system, which is experiencing an intensifying labor shortage even as an aging population creates surging demand.

“It’s a crisis,” said Madeline Sterling, a primary care doctor at Weill Cornell Medicine and the director of Cornell University’s . “It’s not really working for the people involved,” whether they are patients (who can also be younger people with disabilities), family members, or home care workers.

“This is not about what’s going to happen a decade from now,” said Steven Landers, chief executive of the National Alliance for Care at Home, an industry organization. “Do an Indeed.com search in Anytown, USA, for home care aides, and you’ll see so many listings for aides that your eyes will pop out.”

Against this grim backdrop, however, some alternatives show promise in upgrading home care jobs and in improving patient care. And they’re growing.

Some background: Researchers and elder care administrators have warned about this approaching calamity for years. Home care is already among the nation’s fastest-growing occupations, with 3.2 million home health aides and personal care aides on the job in 2024, up from 1.4 million a decade earlier, , a research and advocacy group.

But the nation will need about 740,000 additional home care workers over the next decade, , and recruiting them won’t be easy. Costs to consumers are high — the median hourly rate for a home health aide in 2024 was $34, shows, with big geographic variations. But an aide’s median hourly wage .

These remain unstable, low-paying jobs. Of the largely female workforce, about a third of whom are immigrants, 40% live in low-income households and most receive some sort of public assistance.

Even if the agencies that employ them offer health insurance and they work enough hours to qualify, many cannot afford their premium payments.

Unsurprisingly, the turnover rate approaches 80% annually, according to , a nonprofit organization that promotes co-ops.

But not everywhere. One innovation, still small but expanding: home care cooperatives owned by the workers themselves. The first and largest, Cooperative Home Care Associates in the Bronx borough of New York City, began in 1985 and now employs about 1,600 home care aides. The ICA Group now counts 26 such worker-owned home care businesses nationwide.

“These co-ops are getting exceptional results,” said Geoffrey Gusoff, a family medicine doctor and health services researcher at UCLA. “They have half the turnover of traditional agencies, they hold onto clients twice as long, and they’re paying $2 more an hour” to their owner-employees.

When Gusoff and his co-authors interviewed co-op members for in JAMA Network Open, “we were expecting to hear more about compensation,” he said. “But the biggest single response was, ‘I have more say’” over working conditions, patient care, and the administration of the co-op itself.

“Workers say they feel more respected,” Gusoff said.

Through an initiative to provide financing, business coaching, and technical assistance, the ICA Group intends to boost the national total to 50 co-ops within five years and to 100 by 2040.

Another approach gaining ground: registries that allow home care workers and clients who need care to connect directly, often without involving agencies that provide supervision and background checks but also absorb roughly half the fee consumers pay.

One of the largest registries, . Established through agreements with the Service Employees International Union, the nation’s largest health care union, it serves 40,000 providers and 25,000 clients. (About 10% of home care workers are unionized, according to PHI’s analysis.)

Carina functions as a free, “digital hiring hall,” said Nidhi Mirani, its chief executive. Except in the Seattle area, it serves only clients who receive care through Medicaid, the largest funder of care at home. State agencies handle the paperwork and oversee background checks.

Hourly rates paid to independent providers found on Carina, which are set by union contracts, are usually lower than what agencies charge, while workers’ wages start at $20, and they receive health insurance, paid time off, and, in some cases, retirement benefits.

may be operated by states, as in Massachusetts and Wisconsin, or by platforms like , available in four states. “People are seeking a fit in who’s coming into their homes,” Mirani said. “And individual providers can choose their clients. It’s a two-way street.”

Finally, recent studies indicate ways that additional training for home care workers can pay off.

“These patients have complex conditions,” Sterling said of the aides. Home care workers, who take blood pressure readings, prepare meals, and help clients stay mobile, can spot troubling symptoms as they emerge.

Her team’s recent clinical trial of home health — “the No. 1 cause of hospitalization among Medicare beneficiaries,” Sterling pointed out — measured the effects of a 90-minute virtual training module about its symptoms and management.

“Leg swelling. Shortness of breath. They’re the first signs that the disease is not being controlled,” Sterling said.

In the study, involving 102 aides working for VNS Health, a large nonprofit agency in New York, the training was shown to enhance their knowledge and confidence in caring for clients with heart failure.

Moreover, when aides were given a mobile health app that allowed them to message their supervisors, they made fewer 911 calls and their patients made fewer emergency room visits.

Small-scale efforts like registries, co-ops, and training programs do not directly address home care’s most central problem: cost.

Medicaid underwrites home care for low-income older adults who have few assets, though the Trump administration’s new budget by more than $900 billion over the next decade. The well-off theoretically can pay out-of-pocket.

But “middle-class retired families either spend all their resources and essentially bankrupt themselves to become eligible for Medicaid, or they go without,” Landers said. Options like assisted living and nursing homes are even more expensive.

The United States has never committed to paying for long-term care for the middle class, and it seems unlikely to do so under this administration. Still, savings from innovations like these can reduce costs and might help expand home care through federal or state programs. Several tests and pilots are underway.

Home care workers “have a lot of insight into patients’ conditions,” Sterling said. “Training them and giving them technological tools shows that if we’re trying to keep patients at home, here’s a way to do that with the workforce that’s already there.”

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Acostada e inmóvil sobre una mesa plegable que hacía las veces de cama, Dunnebacke se quejaba de dolor en las piernas. La enfermera Ana Kanellos, enrollando dos pequeñas toallas blancas, mostró cómo elevarle los tobillos para aliviarle el dolor.

“¿Las piernas de mamá siempre están hinchadas? Entonces, levántaselas”, dijo Kanellos.

Unas 20 personas, residentes de Nueva Orleans, escuchaban con atención, interesadas en aprender más sobre cómo cuidar a seres queridos en casa cuando se acercan al final de sus vidas.

Alix Vargas, una de las asistentes, dijo que antes le aterraba la idea de morir. Pero hace unos tres años, la muerte de una prima muy cercana la impulse a participar en talleres grupales de escritura, lo que la ayudó a enfrentar su duelo y superar ese miedo.“Siento un fuerte llamado hacia este trabajo”, dijo. “Definitivamente es un conocimiento que quería adquirir y ampliar mi mente en ese sentido. Y además, es algo que todos vamos a experimentar en nuestras vidas”.

El taller la hizo pensar en una vecina cuya madre tiene demencia.“Inmediatamente pensé: ‘Ok, hay alguien en mi entorno cercano que está viviendo esto’”, recordó Vargas. “‘Esto es una forma práctica de poner en acción la ayuda mutua’”.

La demanda de atención médica en casa, incluyendo los cuidados paliativos domiciliarios, se ha disparado desde el inicio de la pandemia de covid, al igual que el número de personas que cuidan a familiares.

Según realizada por AARP y la Alianza Nacional de Cuidadores (National Alliance for Caregiving), se calcula que 63 millones de personas en el país —casi una cuarta parte de los adultos— brindaron cuidados a otra persona con una condición médica o discapacidad, por lo general otro adulto, el año anterior.

En los últimos 10 años, unas 20 millones de personas más han asumido este rol de cuidadoras.

Se estima que casi 1 de cada 5 personas en Estados Unidos tendrá 65 años o más para 2030, por lo que expertos en salud pronostican que la necesidad de cuidadores en el hogar seguirá creciendo.

Hay numerosos recursos en línea sobre cuidados al final de la vida, pero la capacitación práctica para preparar a personas cuidadoras no es tan accesible, y puede ser costosa. Aun así, familiares sin entrenamiento están asumiendo tareas de enfermería y atención médica.

Durante su campaña presidencial de 2024, Donald Trump prometió más apoyo para las personas cuidadoras, incluyendo un nuevo crédito fiscal para quienes cuidan a familiares. Respaldó un proyecto de ley que fue reintroducido en el Congreso este año y que permitiría otorgar créditos fiscales de hasta $5.000 a cuidadores familiares, pero la legislación no ha avanzado.

Mientras tanto, los recortes a Medicaid previstos en la ley republicana conocida como One Big Beautiful Bill Act, que el presidente Trump firmó en julio, podrían llevar a que algunos estados reconsideren su participación en programas opcionales de Medicaid, como el que ayuda a cubrir los . Esto podría hacer que morir en casa sea aún menos accesible para familias de bajos ingresos, según investigadores y defensores.

Activistas como Osha Towers tratan de ayudar a los cuidadores a navegar esta incertidumbre. Towers lidera el trabajo comunitario en LGBTQ+ en Compasión y Opciones (), una organización nacional que busca mejorar los cuidados, la preparación y la educación sobre el final de la vida.“Es sin duda algo muy aterrador, pero lo que sí sabemos que podemos hacer ahora es simplemente estar presentes para cada persona, y asegurarnos de que sepan qué necesitan para estar preparadas”, afirmó Towers.

En Nueva Orleans, una , que se enfoca en apoyar a familiares que brindan cuidados al final de la vida y en el momento de la muerte, es una de las que busca llenar ese vacío de conocimiento.

Wake organizó el taller gratuito de tres días en septiembre donde Dunnebacke, fundadora del grupo, simuló ser una paciente moribunda. Estos talleres buscan preparar a las personas para saber qué esperar cuando un ser querido está muriendo y cómo cuidarlo, incluso sin ayuda profesional costosa. Los cuidados domiciliarios a tiempo completo son poco comunes.“No se necesita ninguna formación especial para hacer este trabajo”, señaló Dunnebacke. “Solo se necesitan algunas habilidades y apoyos para poder hacerlo”.

En cierto modo, la evolución de los cuidados al final de la vida en Estados Unidos en el último siglo han vuelto a cómo era en el pasado. No fue sino hasta la década de 1960 que la mayoría de las personas comenzaron a morir en hospitales, residencias de mayores e instituciones de cuidados paliativos, en lugar de en casa.

Aunque estas instituciones pueden ofrecer atención médica avanzada inmediata y cuidados paliativos, a menudo carecen de la conexión humana que proporciona el cuidado en el hogar, según Laurie Dietrich, gerente de programas de Wake.

Ahora, más personas quieren morir en sus casas, rodeadas de su familia, pero con el apoyo y la tecnología que ofrecen las instalaciones médicas modernas.

En la última década, las doulas del final de la vida o matronas de la muerte —personas que brindan apoyo no médico y emocional a las personas moribundas y sus seres queridos— se han vuelto más populares como una forma de acompañar en ese proceso y llenar ese vacío.

Douglas Simpson, director ejecutivo de la Asociación Internacional de Doulas del Final de la Vida (), dijo que su organización reconoce la falta de recursos sobre cuidados durante la muerte, por lo que está capacitando a doulas para que actúen como educadoras comunitarias. Espera que estas doulas sean especialmente útiles en comunidades rurales y que promuevan conversaciones sobre la muerte.“Se trata de lograr que las personas se sienta más abiertas y cómodas para hablar sobre la muerte y reflexionar sobre su propia mortalidad”, dijo Simpson.

La capacitación como doula de la muerte varía según la organización, pero el grupo de Simpson se enfoca en enseñar sobre el proceso de morir, cómo respetar la autonomía de la persona que está muriendo y cómo las doulas deben cuidar de sí mismas mientras cuidan de otros.

Algunas personas que participaron en el taller de Wake ya habían recibido algún tipo de formación como doula de la muerte. Después de que la madre de Nicole Washington fue asesinada en 2023, ella consideró convertirse en doula. Pero pensó que la capacitación, que puede costar entre $800 y $3.000, era demasiado clínica e impersonal, en contraste con el enfoque comunitario de Wake.“Me siento con mucha energía, muy animada”, aseguró Washington. “Y también es muy reconfortante compartir con personas que están familiarizadas con la muerte y el duelo”

Susan Nelson, de Ochsner Health, quien ha trabajado como geriatra por 25 años, dijo que se necesitan más programas especializados como el de Wake para capacitar y preparar a las personas cuidadoras.“Aprender habilidades para cuidar a otros suele ser, lamentablemente, una experiencia de prueba y error”, añadió Nelson.

Compasión y Opciones también busca educar a personas cuidadoras. Towers explicó que la formación de la organización abarca desde la planificación anticipada hasta actuar como representante de atención médica y brindar cuidados durante la etapa final.“En este país nos hemos alejado de los cuidados al final de la vida de una forma en la que antes no lo hacíamos”, dijo Towers.

Towers señaló que este movimiento para cuidar a las personas en casa y brindarles apoyo comunitario tiene sus raíces en la epidemia de VIH/sida, cuando algunos médicos a personas con VIH. Amistades, especialmente dentro de la , comenzaron a organizar la entrega de alimentos, visitas, vigilias al pie de la cama e incluso círculos de contacto, donde los pacientes recibían gestos de consuelo como tomarse de las manos para aliviar el dolor y la sensación de aislamiento.

“Me gusta verlo como un modelo de lo que podemos volver a hacer hoy: priorizar el cuidado comunitario”, dijo Towers.

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El gobierno de Trump, que ha prometido “transparencia radical”, afirmó en un documento de que planea publicar el “resumen de proyectos” de los estados que obtengan fondos. Siguiendo el ejemplo de los reguladores federales, muchos estados ocultan sus solicitudes completas, y algunos se han negado a revelar cualquier detalle.

“Seamos claros”, dijo Alan Morgan, director ejecutivo de la Asociación Nacional de Salud Rural (NRHA, por sus siglas en inglés). “Los directores de hospitales, los administradores de clínicas, los líderes comunitarios: todos van a querer saber qué están haciendo sus estados”.

Entre los miembros de la NRHA se incluyen hospitales y clínicas rurales con dificultades económicas, a los que prometieron beneficiar con el Programa de Transformación de la Salud Rural del gobierno de Trump.

Morgan señaló que sus miembros están interesados en saber qué proponen los estados, qué ideas son aprobadas o rechazadas y cuáles son sus justificaciones presupuestarias, que explican cómo podría gastarse el dinero.

Mejorar la atención médica rural es una “tarea increíblemente complicada y difícil”, afirmó Morgan.

El Programa de Transformación de la Salud Rural, con una duración de cinco años, fue aprobado por el Congreso en una ley —la llamada One Big Beautiful Bill Act— que también reduce drásticamente el gasto de Medicaid, del cual dependen en gran medida los proveedores de salud en zonas rurales. Este programa está siendo observado con atención porque representa una inyección muy necesaria de fondos, aunque con la condición impuesta por el gobierno de Trump de que el dinero se utilice en ideas transformadoras y no simplemente para mantener a flote a hospitales rurales en crisis.

La ley indica que la mitad de los $50.000 millones se dividirá en partes iguales entre todos los estados con una solicitud aprobada. El resto se distribuirá en base a un sistema de puntos. , $12.500 millones se asignarán en función del nivel de “ruralidad” de cada estado. Los otros $12.500 millones se otorgarán a estados que obtengan en iniciativas y políticas alineadas, en parte, con los objetivos del gobierno de Trump bajo el lema “Hacer a Estados Unidos Saludable de Nuevo” ().

El secretario de Salud y Servicios Humanos, Robert F. Kennedy Jr., ha prometido en repetidas ocasiones abrir el gobierno al pueblo estadounidense. Su agencia tiene una dedicada a la “transparencia radical”.

“Estamos trabajando para que este sea el Departamento de Salud y Servicios Humanos (HHS, por sus siglas en inglés) más transparente en sus 70 años de historia”, en un testimonio escrito al Congreso en septiembre.

Lawrence Gostin, profesor de derecho en salud pública en la Universidad Georgetown, dijo que el HHS está actuando “de manera totalmente opaca” y que el público tiene derecho a exigir “mayor apertura y claridad”. Sin transparencia, agregó, la población no puede evaluar las responsabilidades de esa agencia.

Catherine Howden, vocera de los Centros de Servicios de Medicare y Medicaid (CMS, por sus siglas en inglés), dijo que la agencia seguirá las regulaciones federales que rigen los al publicar información sobre el programa de salud rural.

Las solicitudes de subvención “no se hacen públicas durante el proceso de evaluación por méritos”, dijo Howden, y agregó: “El propósito de esta política es proteger la integridad de las evaluaciones, la confidencialidad de los solicitantes y la naturaleza competitiva del proceso”.

Demócratas y algunos defensores de la atención de salud temen que las decisiones sobre la distribución del dinero tengan motivaciones políticas.

“Me preocupan las represalias políticas”, dijo la representante Nikki Budzinski, demócrata de Illinois. Como los demócratas controlan la política de nuestro estado, “nuestra solicitud podría no ser tomada tan en serio como la de otros estados liderados por republicanos”, agregó.

En noviembre, los legisladores demócratas de Illinois en la Cámara de Representantes enviaron al administrador de los CMS, Mehmet Oz, solicitando una “evaluación justa e integral” de la solicitud estatal. Las autoridades de Illinois aún no han comunicado su propuesta a �鶹Ů�� Health News, que presentó una solicitud de registros públicos.

Heather Howard, profesora en la Universidad de Princeton, dijo que le “sorprende gratamente la transparencia de muchos estados”.

Howard dirige el programa State Health and Value Strategies de la universidad, que el fondo de salud rural, y elogió a la mayoría de los estados por publicar sus resúmenes del proyecto.

“Esto demuestra el enorme interés que despierta el programa”, dijo Howard.

Su equipo, que revisó cerca de dos docenas de resúmenes estatales, identificó temas comunes como la expansión de servicios móviles y a domicilio, mayor uso de tecnología, y desarrollo de la fuerza laboral con becas, bonos por contratación y ayuda para cuidado infantil en puestos de alta demanda.

“Creo que es emocionante”, dijo Howard. “Considero muy valioso lo que podemos aprender de estas propuestas”.

Howard señaló que las solicitudes de Georgia y Alabama incluían el uso de telerrobótica: una propuesta para utilizar robots para realizar ecografías remotas.

Otro tema que “me entusiasma”, dijo, es el esfuerzo de los estados por crear grupos o comités asesores, como en Idaho, donde se espera que los grupos de trabajo se enfoquen en tecnología, desarrollo de fuerza laboral, colaboración con comunidades indígenas, y salud mental y conductual.

Los 50 estados presentaron sus solicitudes a los reguladores federales antes de la fecha límite del 5 de noviembre, y las resoluciones se anunciarán antes de que termine el año, según los CMS.

Hasta finales de noviembre, casi 40 estados habían hecho público su resumen del proyecto, que es la parte principal de la solicitud donde se describen las iniciativas propuestas, según un seguimiento de �鶹Ů�� Health News. Más de una docena de estados también publicaron sus presupuestos.

Un pequeño grupo de estados —Idaho, Iowa, Kansas, Minnesota, Nuevo México, Dakota del Norte, Carolina del Sur y Wyoming— publicó todos los componentes de la solicitud.

�鶹Ů�� Health News presentó solicitudes de registros públicos para obtener las peticiones completas de los estados. Algunos se negaron a entregar cualquier parte de sus materiales.

Nebraska, por ejemplo, rechazó la solicitud argumentando que su contenido es “información comercial o propietaria” que “podría beneficiar a competidores comerciales”.

Kentucky compartió el resumen de su solicitud, pero indicó que el resto es un “borrador preliminar” no sujeto a divulgación bajo las leyes estatales.

Erika Engle, vocera del gobernador de Hawaii, Josh Green, dijo que el gobernador “está comprometido con la transparencia”, pero se negó a compartir la propuesta del estado.

Hawaii y otros estados aún están procesando solicitudes formales de registros públicos.

Este programa de salud rural forma parte de la ley aprobada en julio que se prevé que reducirá el gasto federal de Medicaid en zonas rurales en durante los próximos 10 años.

Se espera que estos recortes afecten las finanzas de centros rurales, poniendo en riesgo su capacidad para seguir operando. Un informe reciente de Commonwealth Fund reveló que muchas áreas rurales siguen a atención primaria. Pero las normas del programa de salud rural indican que solo el 15% de los nuevos fondos puede utilizarse para pagar atención directa a los pacientes.

Entre los recortes a Medicaid y la nueva inversión del programa, “hay una verdadera oportunidad para que las políticas nacionales tengan un impacto en las zonas rurales, tanto de forma negativa como positiva”, señaló Celli Horstman, investigadora principal de la fundación en Nueva York y coautora del informe.

Entre las propuestas disponibles al público, los estados con gobiernos demócratas muestran disposición para apoyar algunos de los objetivos del gobierno, aunque también rechazan otros, lo cual podría restarles puntos.

Por ejemplo, Nuevo México indicó que presentará una ley para que los estudiantes tomen la Prueba Presidencial de Aptitud Física (Presidential Fitness Test) y que los médicos realicen cursos de educación continua sobre nutrición. Pero no impedirá que las personas usen sus beneficios del Programa de Asistencia Nutricional Suplementaria (SNAP, por sus siglas en inglés) para comprar productos “no nutritivos” como sodas o dulces.

Muchos estados planean invertir en tecnología, como telesalud, ciberseguridad y equipos para monitoreo remoto de pacientes. Otros temas incluyen mejorar el acceso a alimentos saludables, fortalecer los servicios de emergencia, prevenir y tratar enfermedades crónicas, y recurrir a trabajadores comunitarios de salud y paramédicos para visitas domiciliarias.

Algunas propuestas específicas incluyen:

• Arkansas quiere gastar $5 millones en su programa “FAITH” —Acceso, Transporte y Salud Basados en la Fe— para que instituciones religiosas rurales organicen eventos de educación y pruebas preventivas. También se instalarían circuitos para caminar y equipos de ejercicio en las congregaciones.
• Alaska, que históricamente ha usado trineos de perros para entregar medicamentos en zonas remotas, quiere probar el uso de “sistemas aéreos no tripulados” para agilizar la entrega de medicinas.
• Tennessee quiere aumentar el acceso a actividades saludables con inversiones en parques, senderos y mercados agrícolas.
• Maryland propone abrir mercados móviles e instalar refrigeradores y congeladores para facilitar el acceso a alimentos frescos y saludables que suelen dañarse en zonas rurales con pocos supermercados.

El senador estatal Stephen Meredith, un republicano que representa una parte del oeste de Kentucky, dijo que espera que los hospitales rurales sigan cerrando, pese al programa estatal.

“Creo que estamos tratando los síntomas sin curar la enfermedad”, señaló después de escuchar una .

Morgan, cuya organización representa a hospitales rurales que probablemente cerrarán, dijo que las ideas del estado pueden sonar bien.

“Uno puede escribir una narrativa que suene maravillosa”, afirmó. “Pero traducir esas metas aspiracionales en un programa funcional, eso es más difícil”.

Los reporteros de �鶹Ů�� Health News, Phil Galewitz, Katheryn Houghton, Tony Leys, Jazmin Orozco Rodriguez, Maia Rosenfeld, Bram Sable-Smith y Lauren Sausser contribuyeron con este artículo.

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The Trump administration, which has promised “radical transparency,” that it plans to publish the “project summary” for states that win awards. Following the lead of federal regulators, many states are withholding their complete applications, and some have refused to release any details.

“Let’s be clear,” said Alan Morgan, chief executive of the National Rural Health Association. “The hospital CEOs, the clinic administrators, the community leaders: They’re going to want to know what their states are doing.” The NRHA’s members include struggling rural hospitals and clinics, which would benefit from the Trump administration’s Rural Health Transformation Program.

Morgan said his members are interested in what states propose, which of their ideas are approved or rejected, and their budget narratives, which detail how the money could be spent.

Improving rural health care is an “insanely complicated and difficult task,” Morgan said.

The five-year Rural Health Transformation Program was approved by Congress in a law — the One Big Beautiful Bill Act — that also drastically cuts Medicaid spending, on which rural providers heavily depend. It’s being watched closely because it’s a much-needed influx of funds — with a caveat from the Trump administration that the money be spent on transformational ideas, not just to prop up ailing rural hospitals.

The law says half of the $50 billion will be divided equally among all states with an approved application. The rest will be distributed through a points-based system. Of , $12.5 billion will be allotted based on each state’s rurality. The remaining $12.5 billion will go to states that on initiatives and policies that, in part, mirror the Trump administration’s “” objectives.

Health and Human Services Secretary Robert F. Kennedy Jr. has repeatedly promised to open the government to the American people. His agency has devoted to “radical transparency.”

“We’re working to make this the most transparent HHS in its 70-year history,” in written testimony to lawmakers in September when releasing information about the rural health program.

Grant applications are “not released to the public during the merit review process,” Howden said, adding, “The purpose of this policy is to protect the integrity of evaluations, applicant confidentiality, and the competitive nature of the process.”

Democrats and many health care advocates are concerned politics will affect how much money states get.

“I am very concerned about retaliation,” said Rep. Nikki Budzinski (D-Ill.). Because Democrats control her state’s politics, “our application might not be as seriously considered as other states that have Republican leadership,” she added.

Illinois’ Democratic members of the U.S. House to CMS Administrator Mehmet Oz in November asking for “full and fair consideration” of their state application. Illinois officials have not yet released their state’s proposal to �鶹Ů�� Health News, which has a pending public records request.

Heather Howard, a professor of the practice at Princeton University, said she is “pleasantly surprised at how transparent the states have been.”

Howard directs the university’s State Health and Value Strategies program, which the rural health fund, and praised most states for publicly posting their project summaries.

“To me, it speaks to the intense interest in this program,” Howard said. Her team, reviewing about two dozen state summaries, found themes including expansion of home-based and mobile services, increased use of technology, and workforce development initiatives like scholarships, signing bonuses, and child care assistance for high-demand positions.

“I think it’s exciting,” Howard said. “What’s great here is the experimentation we’re going to learn from.”

Telerobotics appeared in Georgia’s and Alabama’s applications, she said, including a proposal to use robotic equipment for remote ultrasounds.

Another theme that “warms my heart,” Howard said, was the effort among states to create advisory groups or committees, including in Idaho, where work groups are expected to focus on technology, workforce development, tribal collaboration, and behavioral health.

All 50 states submitted applications to federal regulators by the Nov. 5 deadline and awards will be announced by the end of the year, according to CMS.

As of late November, nearly 40 states had released their project narrative, the main part of the application, which describes proposed initiatives, according to �鶹Ů�� Health News tracking. More than a dozen states have also released their budget narratives.

Also as of late November, only a handful of states — Idaho, Iowa, Kansas, Minnesota, New Mexico, North Dakota, South Carolina, and Wyoming — had released all parts of the application.

�鶹Ů�� Health News filed public records requests for states’ complete applications. Some states have refused to release any of their application materials.

Nebraska, for example, rejected a public records request, saying its application materials are “proprietary or commercial information” that “would give advantage to business competitors.”

Kentucky shared its application summary but said the remainder of the application is a “preliminary draft” not subject to release under state laws.

Erika Engle, a spokesperson for Hawaii Gov. Josh Green, said the governor “is committed to transparency” but declined to share any of the state’s proposal.

Hawaii and other states are still processing formal public records requests.

The rural health program is part of the July law projected to reduce federal Medicaid spending in rural areas by 10 years.

Those cuts are expected to affect rural health facilities’ bottom lines, threatening their ability to stay open. A recent Commonwealth Fund report found that rural areas continue to to primary care. But the guidelines for the rural health program say states can use only 15% of their new funding to pay providers for patient care.

Between the Medicaid cuts and funding boost from the new program, “there’s real opportunity for national policy to impact rural, both in the negative and the positive potentially,” said Celli Horstman, a senior research associate at the New York-based policy think tank who co-authored the report.

Among the publicly available rural health transformation proposals, Democratic-leaning states show support, or are willing to adopt, some of the administration’s goals but will lose out on points from eschewing others.

For example, New Mexico said it would introduce legislation requiring students to take the Presidential Fitness Test and physicians to complete continuing education courses on nutrition. But it won’t prevent people from using their Supplemental Nutrition Assistance Program benefits to buy “non-nutritious” foods such as soda and candy.

Many states want to invest in technology, including telehealth, cybersecurity, and remote patient monitoring equipment. Other themes include increasing access to healthy food, improving emergency services, preventing and managing chronic illnesses, and enlisting community health workers and paramedics for home visits.

Specific proposals include:

• Arkansas wants to spend $5 million through its “FAITH” program — Faith-based Access, Interventions, Transportation, & Health — to enlist rural religious institutions to host education and preventive screening events. Congregations could also install walking circuits and fitness equipment.
• Alaska, which historically relied on dogsled teams to bring medication to remote areas, is looking to test the use of "unmanned aerial systems" to speed up pharmacy deliveries to such communities.
• Tennessee wants to increase access to healthy activities by spending money on parks, trails, and farmers markets.
• Maryland wants to start mobile markets and install refrigerators and freezers to improve access to fresh, healthy food that often spoils in rural areas with few grocery stores.

State Sen. Stephen Meredith, a Republican who represents part of western Kentucky, said he still expects rural hospitals to close despite his state’s rural health transformation program.

“I think we’re treating symptoms without curing the disease,” he said after listening to a presentation on Kentucky’s proposal at .

Morgan, whose organization represents rural hospitals likely to close, said the state’s ideas may sound good.

“You can craft a narrative that sounds wonderful,” he said. “But then translating the aspirational goals to a functioning program? That’s difficult.”

�鶹Ů�� Health News staffers Phil Galewitz, Katheryn Houghton, Tony Leys, Jazmin Orozco Rodriguez, Maia Rosenfeld, Bram Sable-Smith, and Lauren Sausser contributed to this report.

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

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Dunnebacke lay still atop a folding table that was dressed as a bed, complaining that her legs hurt. Registered nurse Ana Kanellos, rolling up two small white towels, demonstrated how to elevate her ankles to ease the pain.

“ Mom’s legs are always swollen? Raise ’em up,” Kanellos said.

About 20 New Orleans residents listened intently, eager to learn more about how to care for loved ones at home when they’re nearing the end of their lives. Attendee Alix Vargas said she used to be terrified of dying. But about three years ago, a close cousin’s death led her to attend group writing workshops, helping her embrace her grief and conquer her fear.

“ I’m feeling very called towards this work,” she said. “It’s definitely knowledge that I wanted to obtain and expand my mind in that way. And this is also something that we’re all going to encounter in our lives.”

The workshop made her think about a neighbor whose mother has dementia.

“ I was immediately thinking, ‘OK, there’s someone in my immediate orbit that is experiencing this,’” Vargas recalled. ‘“Here’s a practical way to put the mutual aid in use.’”

Demand for home health care, including at-home hospice care, has skyrocketed since the onset of the covid pandemic, as has the number of family caregivers. An estimated 63 million people in the U.S. — nearly a quarter of all American adults — provided care over the previous year to another person with a medical condition or disability, usually another adult, according to by AARP and the National Alliance for Caregiving. In the past 10 years, about 20 million more people have served as caregivers.

With nearly 1 in 5 Americans expected to be 65 or older by 2030, health care experts predict the demand for at-home caregivers will continue to rise. Online resources for end-of-life care are widely available, but hands-on training to prepare people to become caregivers is not, and it can be expensive. Yet untrained family members-turned-caregivers are taking on nursing and medical tasks.

Donald Trump promised more support for caregivers during his 2024 campaign, including a pledge to create new tax credits for those caring for family members. He endorsed a bill reintroduced in Congress this year that would allow family caregivers to receive tax credits of up to $5,000, but the legislation hasn’t moved forward.

Meanwhile, the Medicaid cuts expected from Republicans’ One Big Beautiful Bill Act, which President Trump signed in July, could prompt states looking to offset their added expenses to reconsider participating in optional state Medicaid programs, such as the one that helps pay for . That would threaten to make dying at home even more unaffordable for low-income families, said advocates and researchers.

Advocates like Osha Towers are trying to help caregivers navigate the uncertainty. Towers leads LGBTQ+ engagement at , a national organization that focuses on improving end-of-life care, preparation, and education.

“It is certainly very scary, but what we know we can do right now is be able to just show up for all individuals to make sure that they know what they need to be prepared for,” Towers said.

In New Orleans, a , which focuses on supporting family caregivers providing end-of-life and death care, is one of the organizations trying to help fill the knowledge gap. Wake put on the free, three-day September workshop where Dunnebacke, the group’s founder, pretended to be a dying patient. Such workshops are aimed at preparing attendees for what to expect when loved ones are dying and how to care for them, even without costly professional help. Full-time at-home care is rare.

“You don’t have to have any special training to do this work,” Dunnebacke said. “You just need some skills and some supports to make that happen.”

In some ways, the evolution of end-of-life care in the U.S. over the past century has come full circle. It was only starting in the 1960s that people shifted from dying at home to dying in hospitals, nursing homes, and hospice facilities.

Such institutions can provide immediate advanced medical support and palliative care for patients, but they often lack the human connection that home care provides, said Laurie Dietrich, Wake’s programs manager.

Now, more people want to die in their homes, among family, but with the support and technology that comes with modern medical facilities.

In the past decade, death doulas — who support the nonmedical and emotional needs of the dying and their loved ones — have grown in popularity to help guide people through the dying process, helping to fill that gap. Douglas Simpson, executive director of the , said his organization recognizes the lack of resources for death care, so it is training doulas to be community educators. He hopes doulas can be especially useful in rural communities and lead conversations about dying.

“Making people more open, more comfortable about talking about death and considering their mortality,” Simpson said.

Death doula training varies depending on the organizer, but Simpson’s group focuses on teaching attendees about the dying process, how to maintain the autonomy of the dying person, and how to be aware of how they show up to a job and take care of themselves while caring for others.

Some people who attended Wake’s workshop had also attended some form of death doula training in the past. After Nicole Washington’s mother was killed in 2023, she considered becoming a death doula. But she thought the doula training, which can cost $800 to $3,000, was clinical and impersonal, as opposed to Wake’s community-based approach.

“I feel very energized, very uplifted,” Washington said. “It’s also really nice to be in a space with people who are familiar with death and grief.”

Ochsner Health’s Susan Nelson, who has worked as a geriatrician for 25 years, said there is a need for more specialized programs to train and prepare caregivers, like Wake’s.

“Learning caregiving skills is probably, unfortunately, more trial by fire,” Nelson said.

Compassion & Choices is another organization trying to educate caregivers. Towers said the group’s training ranges from advanced planning to acting as a health care proxy to caring for the dying.

“We’ve gone to a place in our country where we’re so removed from end-of-life care in a way that we didn’t used to be,” Towers said.

Towers said the movement to care for people at home and give them community support has roots in the AIDS epidemic, when some doctors for AIDS patients. Friends, especially in the , started coordinating food delivery, visits, bedside vigils, and even touch circles, where patients could receive comforting forms of touch such as hand-holding to ease pain and feelings of isolation.

“I like to look at it as a blueprint for what we can get back to doing now, which is again just prioritizing community care,” Towers said.

This article was produced in collaboration with . Verite News reporter Christiana Botic contributed to this report.

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“I have no children, no husband, no siblings,” Barden remembered saying. “Who’s going to hold my hand while I die?”

Barden, 75, never had children. She’s lived on her own in western Massachusetts since her husband passed away in 2003. “You hit a point in your life when you’re not climbing up anymore, you’re climbing down,” she told me. “You start thinking about what it’s going to be like at the end.”

It’s something that many older adults who live alone — a growing population, — wonder about. Many have family and friends they can turn to. But some have no spouse or children, have relatives who live far away, or are estranged from remaining family members. Others have lost dear friends they once depended on to advanced age and illness.

More than 15 million people 55 or older don’t have a spouse or biological children; nearly 2 million have no family members at all.

Still other older adults have become isolated due to sickness, frailty, or disability. Between , who do not live in nursing homes, aren’t in regular contact with other people. And research shows that isolation becomes even more common as death draws near.

Who will be there for these solo agers as their lives draw to a close? How many of them will die without people they know and care for by their side?

Unfortunately, we have no idea: National surveys don’t capture information about who’s with older adults when they die. But dying alone is a growing concern as more seniors age on their own after widowhood or divorce, or remain single or childless, according to demographers, medical researchers, and physicians who care for older people.

“We’ve always seen patients who were essentially by themselves when they transition into end-of-life care,” said Jairon Johnson, the medical director of hospice and palliative care for Presbyterian Healthcare Services, the largest health care system in New Mexico. “But they weren’t as common as they are now.”

Attention to the potentially fraught consequences of dying alone surged during the covid-19 pandemic, when families were shut out of hospitals and nursing homes as older relatives passed away. But it’s largely fallen off the radar since then.

For many people, including health care practitioners, the prospect provokes a feeling of abandonment. “I can’t imagine what it’s like, on top of a terminal illness, to think I’m dying and I have no one,” said Sarah Cross, an assistant professor of palliative medicine at Emory University School of Medicine.

Cross’ research shows that more people die at home now than in any other setting. While hundreds of hospitals have “No One Dies Alone” programs, which match volunteers with people in their final days, similar services aren’t generally available for people at home.

Alison Butler, 65, is an end-of-life doula who lives and works in the Washington, D.C., area. She helps people and those close to them navigate the dying process. She also has lived alone for 20 years. In a lengthy conversation, Butler admitted that being alone at life’s end seems like a form of rejection. She choked back tears as she spoke about possibly feeling her life “doesn’t and didn’t matter deeply” to anyone.

Without reliable people around to assist terminally ill adults, there’s also an elevated risk of self-neglect and deteriorating well-being. Most seniors don’t have enough money to pay for assisted living or help at home if they lose the ability to shop, bathe, dress, or move around the house.

Nearly $1 trillion in cuts to Medicaid planned under President Donald Trump’s tax and spending law, previously known as the “One Big Beautiful Bill Act,” probably will , economists and policy experts predict. Medicare, the government’s health insurance program for seniors, generally doesn’t pay for home-based services; Medicaid is the primary source of this kind of help for people who don’t have financial resources. But states may be forced to eviscerate Medicaid home-based care programs as federal funding diminishes.

“I’m really scared about what’s going to happen,” said Bree Johnston, a geriatrician and the director of palliative care at Skagit Regional Health in northwestern Washington state. She predicted that more terminally ill seniors who live alone will end up dying in hospitals, rather than in their homes, because they’ll lack essential services.

“Hospitals are often not the most humane place to die,” Johnston said.

While is an alternative paid for by Medicare, it too often falls short for terminally ill older adults who are alone. (Hospice serves people whose life expectancy is six months or less.) For one thing, hospice is underused: Fewer than half of older adults under age 85 take advantage of hospice services.

Also, “many people think, wrongly, that hospice agencies are going to provide person power on the ground and help with all those functional problems that come up for people at the end of life,” said Ashwin Kotwal, an associate professor of medicine in the division of geriatrics at the University of California-San Francisco School of Medicine.

Instead, agencies usually provide only intermittent care and rely heavily on family caregivers to offer needed assistance with activities such as bathing and eating. Some hospices won’t even accept people who don’t have caregivers, Kotwal noted.

That leaves hospitals. If seniors are lucid, staffers can talk to them about their priorities and walk them through medical decisions that lie ahead, said Paul DeSandre, the chief of palliative and supportive care at Grady Health System in Atlanta.

If they’re delirious or unconscious, which is often the case, staffers normally try to identify someone who can discuss what this senior might have wanted at the end of life and possibly serve as a surrogate decision-maker. Most states have laws specifying default surrogates, usually family members, for people who haven’t named decision-makers in advance.

If all efforts fail, the hospital will go to court to petition for guardianship, and the patient will become a ward of the state, which will assume legal oversight of end-of-life decision-making.

In extreme cases, when no one comes forward, someone who has died alone may be classified as “unclaimed” and buried in a common grave. This, too, is an increasingly common occurrence, according to “The Unclaimed: Abandonment and Hope in the City of Angels,” a book about this phenomenon, published last year.

Shoshana Ungerleider, a physician, founded End Well, an organization committed to improving end-of-life experiences. She suggested people make concerted efforts to identify seniors who live alone and are seriously ill early and provide them with expanded support. Stay in touch with them regularly through calls, video, or text messages, she said.

And don’t assume all older adults have the same priorities for end-of-life care. They don’t.

Barden, the widow in Massachusetts, for instance, has focused on preparing in advance: All her financial and legal arrangements are in order and funeral arrangements are made.

“I’ve been very blessed in life: We have to look back on what we have to be grateful for and not dwell on the bad part,” she told me. As for imagining her life’s end, she said, “it’s going to be what it is. We have no control over any of that stuff. I guess I’d like someone with me, but I don’t know how it’s going to work out.”

Some people want to die as they’ve lived — on their own. Among them is 80-year-old Elva Roy, founder of Age-Friendly Arlington, Texas, who has lived alone for 30 years after two divorces.

When I reached out, she told me she’d thought long and hard about dying alone and is toying with the idea of medically assisted death, perhaps in Switzerland, if she becomes terminally ill. It’s one way to retain a sense of control and independence that’s sustained her as a solo ager.

“You know, I don’t want somebody by my side if I’m emaciated or frail or sickly,” Roy said. “I would not feel comforted by someone being there holding my hand or wiping my brow or watching me suffer. I’m really OK with dying by myself.”

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“I see you went popcorn-crazy this weekend,” Owens teased as she brushed kernels off the counter into a garbage can. Crooks, who relies on a walker or wheelchair, can steady herself against the counter while waiting for corn to pop. But back, knee, and foot problems have left the 77-year-old silver-haired retired teacher incapable of most food preparation and cleanup.

Like nearly 800,000 other Californians, Crooks depends on aides from In-Home Supportive Services, a program funded through Medi-Cal, California’s version of Medicaid. Owens has worked as Crooks’ aide for almost three years. In addition to cooking and cleaning, she helps her shower, shops for groceries, drives her to medical appointments, and runs other errands.

For more than 50 years, low-income seniors and disabled people have been able to stay in their California homes — and out of — with help from government-paid aides. But in their latest bid to renew President Donald Trump’s tax cuts, House Republicans released a plan on May 11 that would over 10 years from Medicaid with how to cut the budget. Several proposals would disproportionately target California, according to Larry Levitt, �鶹Ů��’s executive vice president for health policy. Federal cuts, coupled with the state’s existing budget woes, could inflict a “double whammy for California and trigger reductions in Medi-Cal and other state programs,” he said. �鶹Ů�� is a health information nonprofit that includes �鶹Ů�� Health News.

Although federal law compels states to offer certain services, such as nursing home care, they’re to cover home-based care for low-income seniors and disabled people like Crooks, leaving the in-home services program to cuts, said Amber Christ, managing director of health advocacy for the nonprofit legal group Justice in Aging.

In the wake of the Great Recession, California made a series of funding cuts to in-home support aides. Lawsuits temporarily stopped the bulk of the cuts, but a led to an 8% reduction in 2013 and an additional 7% cut in 2014.

Further reducing these services would inevitably force more people to move into nursing homes, Christ said. “It would be an enormous setback from the progress we have made to provide care in the home and the community to support older adults and their families,” she said. “I think it will cost people’s lives.”

Owens supports herself and her teenage son with what she earns working 136 hours a month for Crooks. She’s confident she can figure out another way to make a living, so she’s less worried about losing her $20-an-hour income than she is about Crooks’ losing her independence.

“I absolutely adore Carol,” said Owens, 36, as she chopped onions for Crooks’ breakfast. “I look at her as a grandma.”

From a makeshift desk where she’d been scrolling through emails, Crooks affectionately eyed Owens and announced, “You’re adopted.”

In his May 14 , Gov. Gavin Newsom trimmed funding for In-Home Supportive Services, most notably by putting weekly caps of 50 hours on provider overtime and travel, reinstating an asset limit, and eliminating the service for immigrant adults without legal status who aren’t already enrolled.

The proposed changes are unlikely to affect Crooks, but if congressional Republicans slash Medicaid spending, the Democratic governor , California could not afford to backfill all the proposed federal cuts. Almost two-thirds of the $28.3 billion California has budgeted for the in-home support program is supposed to come from endangered federal Medicaid funding. The state legislature must pass a balanced budget by June 15, regardless of the status of federal funding negotiations.

Owens delivered an omelet and a mug of coffee to Crooks. “I know these are politicians,” she said, “but they still have to understand the elders are our roots. And I’m sure they have to have some kind of heart.”

Crooks is less certain, more anxious. “If they start messing with my programs,” she said, “I’m in trouble.”

Burt Conell, 64, is also worried. A paraplegic, he’s been confined to a wheelchair for 30 years, since, despondent after his girlfriend left him, he jumped in front of a train. He relies on in-home aides to help him bathe and clean his San Francisco apartment.

When he heard the government might cut his funding, he imagined being unable to shower, getting rashes and bedsores, and having to move into a nursing home. Again, he contemplated suicide.

“It made me feel like I was using so much resources that I shouldn’t exist,” he said.

At an of San Francisco’s Disability and Aging Services Commission, Commissioner asked about the fate of In-Home Supportive Services, on which she relies. “We don’t know what’s going to happen,” Executive Director Kelly Dearman replied, adding that Medicaid cuts could result in a decrease in the number of hours San Francisco beneficiaries, like Conell and Bittner, who is quadriplegic with a speech disability, receive. “It’ll be dire,” Dearman concluded.

Every day, around 30 people contact California Advocates for Nursing Home Reform seeking advice on how to get in-home help, said Maura Gibney, the nonprofit’s executive director. These days, the group frequently hears from recipients who have achieved a semblance of normalcy in the aftermath of a major setback, such as a stroke, but fear they’ll lose their benefits, she said.

“It’s hard to really give people reassurance at this time because I don’t think any of us know what will happen,” Gibney said.

Lately, when she hears from people looking for in-home help for the first time, Gibney wonders if their efforts will end up being pointless. “It feels a little bit like trying to show somebody how to get into the building as the top floor is on fire,” she said.

Paul Dunaway, who directs Sonoma County’s Adult and Aging Division, described the dearth of information he and his staff have to offer older and disabled people about future services as “anxiety-provoking.”

“There’s a lot of chaos happening and not much to really grab onto yet about the funding on the federal level,” Dunaway said.

Uncertainty and fear about service cuts, coupled with weaning off pain medicine from a back surgery, left Crooks — who retired from teaching after being diagnosed with bipolar disorder — unable to sleep, she said, and she spiraled into her first manic episode in more than a decade.

Owens was sweeping the living room but stopped to listen as Crooks talked about being tired, worried, and feeling out of control. “I told her, ‘Regardless, I’m gonna always be here for you, no matter what,’” Owens said.

Crooks, wearing a T-shirt picturing the Statue of Liberty with her hands covering her face, nodded. “It helped a lot,” she said.

Nonetheless, without an in-home aide, Crooks said, she would have no choice but to move into a nursing home — a fate she cannot bear to consider.

“It wouldn’t be a home,” she said. “It’s where people go to die.”

This article was produced by �鶹Ů�� Health News, which publishes , an editorially independent service of the .��

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