SACRAMENTO, California. — Medi-Cal, el complejo programa de Medicaid de California, con un valor de $174.6 mil millones, ofrece seguro de salud a casi 15 millones de residentes con bajos ingresos y discapacidades.

California inscribe al doble de personas que Nueva York y a más del triple que Texas, los dos estados con el mayor número de participantes en Medicaid después de California.

La alta tasa de inscripción se debe a que el estado va más allá de los requisitos federales de elegibilidad: ha expandido Medi-Cal a más residentes de bajos ingresos. También ofrece una amplia gama de beneficios, como atención oftalmológica, dental y de maternidad, algunos de los cuales se financian en gran parte con fondos federales, pero que también afectan el gasto estatal.

Sin embargo, últimamente, Medi-Cal ha estado en la mira política.

Los demócratas afirman que la mayor amenaza para Medi-Cal son los recortes presupuestarios republicanos de $880 mil millones que se están considerando en Washington, DC, y que, según expertos en salud, requerirían restricciones de elegibilidad, como requisitos laborales, o recortes de programas para generar ahorros suficientes a lo largo de una década.

Los republicanos argumentan que los costos de Medicaid se han disparado a causa del fraude y el abuso, y critican a los demócratas estatales por permitir que el beneficio esté disponible para inmigrantes sin importar su estatus legal.

En marzo, la administración del gobernador Gavin Newsom solicitó un préstamo de $3.4 mil millones para cubrir excedente de gasto inesperado en Medi-Cal, y en abril los legisladores asignaron $2.8 mil millones adicionales para el resto del año fiscal.

Si bien el gobernador demócrata reconoció la necesidad de ajustes, ha defendido los esfuerzos del estado para que más personas tengan cobertura. En 2022, la tasa de personas de menos de 65 años sin seguro en el estado bajó a un mínimo histórico del 6.2%, según la California Health Care Foundation.

Mientras los legisladores debaten la financiación del programa de la red de seguridad, esto es lo que está en juego para el mayor programa de salud de California.

¿Quién está cubierto?

Más de un tercio de los californianos dependen de Medi-Cal, o del Programa de Seguro de Salud Infantil (CHIP) relacionado, para consultar con un médico, terapeuta o dentista. También lo utilizan para obtener medicamentos y acceder a tratamiento.

Medi-Cal tambien representa una ayuda para las familias, ya que permite que las personas con discapacidad y los adultos mayores permanezcan en sus hogares, proporcionando cobertura a sus cuidadores. Además, financia la atención de enfermería para este ultimo grupo.

La gran mayoría de los afiliados califican porque ganan el 138% o menos del nivel federal de pobreza: $21.597 anuales para una persona o $44.367 para una familia de cuatro. Si bien es un monto bajo para un estado donde el ingreso familiar promedio supera los $96.000, es mucho más generoso que el límite de elegibilidad familiar de Alabama, que es del 18% del nivel federal de pobreza, o el de Florida, 26%.

A diferencia de Alabama o Florida, California extiende la cobertura a adultos de bajos ingresos sin dependientes. También cubre a más personas con discapacidad que trabajan, reclusos y otros residentes que no calificarían para el programa de beneficios si los legisladores estatales no lo hubieran ampliado más allá de lo requerido por el gobierno federal.

Según estimaciones estatales, Medi-Cal cubre a aproximadamente 7.3 millones de familias de bajos ingresos y a otros 5 millones de adultos, la mayoría sin dependientes. Un millón adicional de personas con discapacidades dependen del programa.

Medi-Cal también cubre los gastos de 1.4 millones de residentes mayores de 65 años que no están cubiertos por Medicare, como atención a largo plazo y servicios dentales, de audición y de la vista.

La mayoría de los beneficiarios adultos menores de 65 años de Medi-Cal trabajan, según una revisión de KFF de los datos del censo de marzo de 2024. En California, aproximadamente el 42% de los adultos sin discapacidades que reciben Medi-Cal trabajan a tiempo completo y un 20% adicional tiene empleos de medio tiempo. Aquellos que no tienen trabajo suelen cuidar a un familiar, ir a la escuela o estar enfermos.

Según los datos estatales de inscripción, poco más de la mitad de los beneficiarios de Medi-Cal son latinos, aproximadamente el 16% blancos no hispanos, el 9% asiáticos o habitantes de las islas del Pacífico y el 7% negros no hispanos. Esto difiere de los porcentajes totales nacionales, donde aproximadamente el 40% de las personas menores de 65 años que usan Medicaid son blancos no hispanos, el 30% hispanos, el 19% negros no hispanos y el 1% nativos americanos.

¿De dónde proviene el dinero para Medi-Cal?

El gobierno federal financia aproximadamente el 60% del programa. De su presupuesto de casi $175 mil millones para este año fiscal, se espera que Washington, DC, contribuya con $107.5 mil millones.

Unos $37.6 mil millones adicionales provienen del fondo general del estado. Los $29.500 millones restantes llegan desde otras fuentes, como las tarifas hospitalarias, un impuesto a las organizaciones de atención médica administrada, los ingresos fiscales del tabaco y los reembolsos de medicamentos.

California recibe el 50% de fondos federales de contrapartida para servicios básicos, como la cobertura para niños y mujeres embarazadas de bajos ingresos. Sin embargo, recibe un 9% de contrapartida para los aproximadamente 5 millones de californianos que ha incorporado a sus registros gracias a la expansión de Medicaid bajo la Ley de Cuidado de salud a Bajo Precio (ACA, también conocida como Obamacare).

¿Adónde se destina el dinero?

En promedio, Medi-Cal cuesta $8.000 por beneficiario, pero los costos varían ampliamente, según un análisis realizado en marzo por la Oficina del Analista Legislativo de California.

Por ejemplo, las personas con discapacidad representan el 7% de los afiliados pero el 19% del gasto de Medi-Cal, con un costo anual promedio de $21.626.

Mientras tanto, el costo para cubrir a las personas mayores rondea los $15.000. Y la inscripción de adultos mayores, de 1.4 millones, se ha disparado, aumentando un 40% desde 2020, a medida que los legisladores flexibilizaron las normas sobre la cantidad de bienes que las personas de 65 años o más pueden tener para seguir siendo elegibles para el programa.

California también cubre gran parte de la atención de salud de alrededor de 1.6 millones de inmigrantes sin papeles: aproximadamente $8,4 mil millones de los $9,5 mil millones, según declaró Guadalupe Manríquez, gerenta de presupuesto del programa del Departamento de Finanzas, durante una reciente audiencia del Comité de Presupuesto de la Asamblea.

¿Qué recortes podría haber?

En marzo, el presidente Donald Trump afirmó que no tocaría el Seguro Social, Medicare ni Medicaid, sino que se centraría en erradicar el fraude. Sin embargo, expertos en salud afirman que los servicios de Medicaid se verían desmantelados si el Congreso implementa recortes masivos de gastos para financiar la extensión de los recortes de impuestos de Trump.

Los republicanos del Congreso han debatido la implementación de requisitos de trabajo para adultos sin discapacidades, lo que podría afectar al menos a un millón de beneficiarios de Medicaid en California, la mayor cantidad en cualquier estado, según un análisis del Urban Institute.

Los legisladores también podrían revertir la expansión de Medicaid bajo ACA, aprobada en 2010 y que permitió que más personas calificaran para Medicaid según sus ingresos. California, otros 39 estados y Washington, DC, han optado por adoptar la “expansión de Medicaid”, en la que el gobierno federal cubre el 90% de la cobertura de esos beneficiarios.

Si optara por mantener la cobertura para los aproximadamente 5 millones de beneficiarios adicionales que la han obtenido gracias a la expansion, le costaría a California miles de millones de dólares cada año.

Los republicanos también podrían hacer difícil que estados como California siguieran recibiendo ayuda federal a través de impuestos a proveedores, como el impuesto a las MCO, algo que propuso la primera administración Trump pero que posteriormente descartó. El impuesto a los planes de atención médica administrada genera alrededor de $5 mil millones al año y fue respaldado por los votantes en una iniciativa electoral el otoño pasado.

Sin embargo, el gobierno federal lleva años quejándose de cómo los estados aplican dichos impuestos a los planes de seguro y a los hospitales. Si restringe la forma en que los estados recaudan estos impuestos, probablemente provocaría un déficit de financiación en California.

Funcionarion de Newsom reconocen que, si se producen recortes federales, el estado no podría absorber el costo de los programas existentes. Los republicanos están presionando a los demócratas que controlan la Legislatura para que pongan fin a la cobertura de Medi-Cal para los residentes sin papeles, algo que ni Newsom ni los líderes legislativos demócratas han expresado su disposición a hacer.

Los líderes estatales también podrían verse obligados a recortar beneficios opcionales como la atención dental y la optometría, reducir los servicios destinados a mejorar la calidad de vida de los beneficiarios o los pagos a los planes de atención médica administrada que cubren al 94% de los beneficiarios de Medi-Cal.

Eso fue lo que hicieron los legisladores californianos durante la Gran Recesión: recortaron las tasas de reembolso a los proveedores y eliminaron beneficios, como la atención oftalmológica y dental para adultos. El entonces gobernador, el republicano Arnold Schwarzenegger, fue aún más lejos, recortando $61 millones de la financiación de Medi-Cal de los condados en una sangría presupuestaria que, según él, contenía “lo bueno, lo malo y lo feo”.

Esta historia fue producida por Kaiser Health News, que publica California Healthline, un servicio editorialmente independiente de la California Health Care Foundation.

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

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Mientras la epidemia de sarampión más grave en una década ha causado la muerte de dos niños y se ha extendido a 27 estados sin dar señales de desacelerar, las creencias sobre la seguridad de la vacuna contra esta infección y la amenaza de la enfermedad se polarizan rápido, alimentadas por las opiniones antivacunas del funcionario de salud de mayor rango del país.

Aproximadamente dos tercios de los padres con inclinaciones republicanas desconocen el aumento en los casos de sarampión este año, mientras que cerca de dos tercios de los demócratas sabían sobre el tema, según una encuesta de KFF publicada el miércoles 23 de abril.

Los republicanos son mucho más escépticos con respecto a las vacunas y tienen el doble de probabilidades (1 de cada 5) que los demócratas (1 de cada 10) de creer que la vacuna contra el sarampión es peor que la enfermedad, según la encuesta realizada a 1.380 adultos estadounidenses.

Alrededor del 35% de los republicanos que respondieron a la encuesta, realizada del 8 al 15 de abril por internet y por teléfono, aseguraron que la teoría desacreditada que vincula la vacuna contra el sarampión, las paperas y la rubéola con el autismo era definitiva o probablemente cierta, en comparación con solo el 10% de los demócratas.

Las tendencias son prácticamente las mismas que las reportadas por KFF en una encuesta de junio de 2023.

Sin embargo, en la nueva encuesta, 3 de cada 10 padres creían erróneamente que la vitamina A puede prevenir las infecciones por el virus del sarampión, una teoría que Robert F. Kennedy Jr., el secretario de Salud y Servicios Humanos, ha diseminado desde que asumió el cargo, en medio del brote de sarampión.

Se han reportado alrededor de 900 casos en 27 estados, la mayoría en un brote centrado en el oeste de Texas.

“Lo más alarmante de la encuesta es que estamos observando un aumento en la proporción de personas que han escuchado estas afirmaciones”, afirmó la coautora Ashley Kirzinger, directora asociada del Programa de Investigación de Encuestas y Opinión Pública de KFF. (KFF es una organización sin fines de lucro dedicada a la información sobre salud que incluye a KFF Health News).

“No es que más gente crea en la teoría del autismo, sino que cada vez más gente escucha sobre ella”, afirmó Kirzinger. Debido a que las dudas sobre la seguridad de las vacunas es factor directo de la decision de los padres reducer la vacunación de sus hijos, “esto demuestra la importancia de que la información veraz forme parte del panorama mediático”, añadió.

“Esto es lo que cabría esperar cuando la gente está confundida por mensajes contradictorios provenientes de personas en posiciones de autoridad”, afirmó Kelly Moore, presidenta y directora ejecutiva de Immunize.org, un grupo de defensa de la vacunación.

Numerosos estudios científicos no han establecido ningún vínculo entre cualquier vacuna y el autismo. Sin embargo, Kennedy ha ordenado al Departamento de Salud y Servicios Humanos (HHS) que realice una investigación sobre los posibles factores ambientales que contribuyen al autismo, prometiendo tener “algunas de las respuestas” sobre el aumento en la incidencia de la afección para septiembre.

La profundización del escepticismo republicano hacia las vacunas dificulta la difusión de información precisa en muchas partes del país, afirmó Rekha Lakshmanan, directora de estrategia de The Immunization Partnership, en Houston.

El 23 de abril, Lakshmanan iba a presentar un documento sobre cómo contrarrestar el activismo antivacunas ante el Congreso Mundial de Vacunas en Washington. El documento se basaba en una encuesta que reveló que, en las asambleas estatales de Texas, Louisiana, Arkansas y Oklahoma, los legisladores con profesiones médicas se encontraban entre los menos propensos a apoyar las medidas de salud pública.

“Hay un componente político que influye en estos legisladores”, afirmó. Por ejemplo, cuando los legisladores invitan a quienes se oponen a las vacunas a testificar en las audiencias legislativas, se alimenta una avalancha de desinformación difícil de refutar, agregó.

Eric Ball, pediatra de Ladera Ranch, California, área afectada por un brote de sarampión en 2014-2015 que comenzó en Disneyland, afirmó que el miedo al sarampión y las restricciones más estrictas del estado de California sobre las exenciones de vacunas evitaron nuevas infecciones en su comunidad del condado de Orange.

“La mayor desventaja de las vacunas contra el sarampión es que funcionan muy bien. Todos se vacunan, nadie contrae sarampión, todos se olvidan del sarampión”, concluyó. “Pero cuando regresa la enfermedad, se dan cuenta de que hay niños que se están enfermando de gravedad, y potencialmente muriendo en la propia comunidad, y todos dicen: ‘¡Caramba! ¡Mejor que vacunemos!’”.

En 2015, Ball trató a tres niños muy enfermos de sarampión. Después, su consultorio dejó de atender a pacientes no vacunados. “Tuvimos bebés expuestos en nuestra sala de espera”, dijo. “Tuvimos una propagación de la enfermedad en nuestra oficina, lo cual fue muy desagradable”.

Aunque dos niñas que eran sanas murieron de sarampión durante el brote de Texas, “la gente todavía no le teme a la enfermedad”, dijo Paul Offit, director del Centro de Educación sobre Vacunas del Hospital Infantil de Philadelphia, que ha atendido algunos casos.

Pero las muertes “han generado más angustia, según la cantidad de llamadas que recibo de padres que intentan vacunar a sus bebés de 4 y 6 meses”, contó Offit. Los niños generalmente reciben su primera vacuna contra el sarampión al año de edad, porque tiende a no producir inmunidad completa si se administra antes.

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

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While the most serious measles epidemic in a decade has led to the deaths of two children and spread to 27 states with no signs of letting up, beliefs about the safety of the measles vaccine and the threat of the disease are sharply polarized, fed by the anti-vaccine views of the country’s seniormost health official.

About two-thirds of Republican-leaning parents are unaware of an uptick in measles cases this year while about two-thirds of Democratic ones knew about it, according to a KFF survey released Wednesday.

Republicans are far more skeptical of vaccines and twice as likely (1 in 5) as Democrats (1 in 10) to believe the measles shot is worse than the disease, according to the survey of 1,380 U.S. adults.

Some 35% of Republicans answering the survey, which was conducted April 8-15 online and by telephone, said the discredited theory linking the measles, mumps, and rubella vaccine to autism was definitely or probably true — compared with just 10% of Democrats.

The trends are roughly the same as KFF reported in a June 2023 survey. But in the new poll, 3 in 10 parents erroneously believed that vitamin A can prevent measles infections, a theory Health and Human Services Secretary Robert F. Kennedy Jr. has brought into play since taking office during the measles outbreak.

About 900 cases have been reported in 27 U.S. states, mostly in a West Texas-centered outbreak.

“The most alarming thing about the survey is that we’re seeing an uptick in the share of people who have heard these claims,” said co-author Ashley Kirzinger, associate director of KFF’s Public Opinion and Survey Research Program. KFF is a health information nonprofit that includes KFF Health News.

“It’s not that more people are believing the autism theory, but more and more people are hearing about it,” Kirzinger said. Since doubts about vaccine safety directly reduce parents’ vaccination of their children, “that shows how important it is for actual information to be part of the media landscape,” she said.

“This is what one would expect when people are confused by conflicting messages coming from people in positions of authority,” said Kelly Moore, president and CEO of Immunize.org, a vaccination advocacy group.

Numerous scientific studies have established no link between any vaccine and autism. But Kennedy has ordered HHS to undertake an investigation of possible environmental contributors to autism, promising to have “some of the answers” behind an increase in the incidence of the condition by September.

The deepening Republican skepticism toward vaccines makes it hard for accurate information to break through in many parts of the nation, said Rekha Lakshmanan, chief strategy officer at The Immunization Partnership, in Houston.

Lakshmanan on April 23 was to present a paper on countering anti-vaccine activism to the World Vaccine Congress in Washington. It was based on a survey that found that in the Texas, Louisiana, Arkansas, and Oklahoma state assemblies, lawmakers with medical professions were among those least likely to support public health measures.

“There is a political layer that influences these lawmakers,” she said. When lawmakers invite vaccine opponents to testify at legislative hearings, for example, it feeds a deluge of misinformation that is difficult to counter, she said.

Eric Ball, a pediatrician in Ladera Ranch, California, which was hit by a 2014-15 measles outbreak that started in Disneyland, said fear of measles and tighter California state restrictions on vaccine exemptions had staved off new infections in his Orange County community.

“The biggest downside of measles vaccines is that they work really well. Everyone gets vaccinated, no one gets measles, everyone forgets about measles,” he said. “But when it comes back, they realize there are kids getting really sick and potentially dying in my community, and everyone says, ‘Holy crap; we better vaccinate!’”

Ball treated three very sick children with measles in 2015. Afterward his practice stopped seeing unvaccinated patients. “We had had babies exposed in our waiting room,” he said. “We had disease spreading in our office, which was not cool.”

Although two otherwise healthy young girls died of measles during the Texas outbreak, “people still aren’t scared of the disease,” said Paul Offit, director of the Vaccine Education Center at Children’s Hospital of Philadelphia, which has seen a few cases.

But the deaths “have created more angst, based on the number of calls I’m getting from parents trying to vaccinate their 4-month-old and 6-month-old babies,” Offit said. Children generally get their first measles shot at age 1, because it tends not to produce full immunity if given at a younger age.

KFF Health News’ Jackie Fortiér contributed to this report.

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

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SACRAMENTO, Calif. — Medi-Cal, California’s complex, $174.6 billion Medicaid program, provides health insurance for nearly 15 million residents with low incomes and disabilities. The state enrolls twice as many people as New York and more than three times as many as Texas — the two states with the largest number of Medicaid participants after California.

Enrollment is high because California goes beyond federal eligibility requirements, opening Medi-Cal to more low-income residents. The state also provides a broad range of benefits, such as vision, dental, and maternity care — some of which is largely paid for by federal dollars but which also affects state spending.

But lately, Medi-Cal has found itself in political crosshairs.

Democrats say the biggest threat to Medi-Cal is $880 billion in GOP budget cuts being mulled in Washington, D.C., which health experts say would require eligibility restrictions, such as work requirements, or program cuts to yield enough savings over a decade. Republicans argue that Medicaid costs have spiked due to fraud and abuse and they criticize state Democrats for making the benefit available to immigrants regardless of legal status.

In March, Gov. Gavin Newsom’s administration borrowed $3.4 billion to cover an unexpected overrun in Medi-Cal, and lawmakers in April appropriated an additional $2.8 billion for the rest of the fiscal year. Although the Democratic governor acknowledged a need for adjustments, he has defended the state’s efforts to get more people covered. In 2022, California’s uninsured rate for residents under age 65 hit a record low of 6.2%, according to the California Health Care Foundation.

As lawmakers debate funding for the safety net program, here’s what’s at stake for California’s largest health program.

Who’s Covered?

More than a third of Californians depend on Medi-Cal or the closely related Children’s Health Insurance Program to see a doctor, therapist, or dentist. They rely on the program to get medicine and access treatment. It can also be a lifeline for families by allowing people with disabilities and seniors to stay in their homes and providing coverage to their caregivers. It also funds nursing care for seniors.

The overwhelming majority of enrollees qualify because they earn 138% or less of the federal poverty level: $21,597 annually for an individual person or $44,367 for a family of four. While that’s low for a state where the median household income tops $96,000, it’s far more generous than Alabama’s family eligibility limit, which is 18% of the federal poverty level, or Florida’s, at 26%.

Unlike Alabama or Florida, California extends coverage to low-income adults without dependents. The state also covers more people with disabilities who work, inmates, and other residents who wouldn’t qualify for the benefit program if California lawmakers hadn’t expanded the program beyond what the federal government requires.

According to state estimates, Medi-Cal covers about 7.3 million low-income families and an additional 5 million adults, most of whom don’t have dependents. An additional million people with disabilities rely on the program.

Medi-Cal also picks up the tab for 1.4 million residents 65 and older for benefits not covered by Medicare, such as long-term care and dental, hearing, and vision care.

The majority of adult Medi-Cal recipients under 65 work, according to a KFF review of March 2024 census data. In California, about 42% of nondisabled adults on Medi-Cal work full time and an additional 20% work part time. Those not employed were most commonly caring for a family member, attending school, or ill.

Just over half of Medi-Cal recipients are Latino, about 16% white, 9% Asian or Pacific Islander, and 7% Black, according to state enrollment data. That differs from the nation as a whole, where about 40% of people under age 65 who use Medicaid are white, 30% Hispanic, 19% Black, and 1% Indigenous people.

Where Does the Money Come From?

The federal government pays for about 60% of the Medi-Cal program. Of its nearly $175 billion budget this fiscal year, Washington, D.C., is expected to contribute $107.5 billion.

An additional $37.6 billion comes from the state’s general fund. The final $29.5 billion comes from other sources including hospital fees, a managed-care organization tax, tobacco tax revenue, and drug rebates.

California receives 50% in matching federal dollars for core services, such as coverage to children and low-income pregnant women. But it gets a 90% match for the roughly 5 million Californians it has added to rolls under the Medicaid expansion authorized by the Affordable Care Act.

Where Does It Go?

On average, Medi-Cal costs $8,000 per recipient, but costs vary widely, according to a March analysis by the California Legislative Analyst’s Office.

For instance, people with disabilities account for 7% of enrollees but 19% of Medi-Cal’s spending, with an average annual cost of $21,626.

Meanwhile, the cost to cover seniors averages roughly $15,000. And senior enrollment, at 1.4 million, has skyrocketed, increasing 40% since 2020 as lawmakers eased the rules for how many assets people 65 and older could have and still qualify for the program.

California also foots much of the bill to cover about 1.6 million immigrants without legal status — roughly $8.4 billion of the $9.5 billion, Department of Finance program budget manager Guadalupe Manriquez said during a recent Assembly Budget Committee hearing.

What Could Get Cut?

President Donald Trump in March said that he would not “touch Social Security, Medicare, Medicaid” but focus on getting the “fraud out of there.” However, health experts say Medicaid services would be gutted if Congress follows through on massive spending reductions to pay to extend Trump’s tax cuts.

Congressional Republicans have discussed implementing work requirements for nondisabled adults, which could affect at least 1 million Medicaid enrollees in California, the most of any state, according to an analysis by the Urban Institute.

Lawmakers also could roll back the Medicaid expansion under the Affordable Care Act, also known as Obamacare, which passed in 2010 and allowed more people to qualify for Medicaid based on income. California, 39 other states, and Washington, D.C., have chosen to adopt “Medicaid expansion,” in which the federal government pays for 90% of coverage for those enrollees.

Such a move would cost California billions each year if it opted to continue coverage for the roughly 5 million additional enrollees who have gained coverage under the expansion.

Republicans could also make it tougher for states such as California to continue to draw federal aid through provider taxes such as the MCO tax, something the first Trump administration proposed but later dropped. The tax on managed care plans brings in about $5 billion a year and was endorsed by voters in a ballot initiative last fall, but the federal government has been complaining for years about how states levy such taxes on insurance plans and hospitals. If it restricts how states collect these taxes, it would likely cause a funding gap in California.

If federal cuts occur, Newsom officials acknowledge, the state couldn’t absorb the cost of existing programs. Republicans are pressuring Democrats who control the legislature to end Medi-Cal coverage of residents without legal status — something neither Newsom nor Democratic legislative leaders have expressed a willingness to do.

State leaders also could be faced with cutting optional benefits such as dental care and optometry, trimming services aimed at enhancing recipients’ quality of life, or reducing payments to managed care plans that cover 94% of Medi-Cal recipients.

That’s what California lawmakers did during the Great Recession, cutting reimbursement rates to providers and eliminating benefits including eye and dental care for adults. The governor at the time, Republican Arnold Schwarzenegger, went a step further, chopping $61 million from counties’ Medi-Cal funding in a budget bloodletting that he said contained "the good, the bad, and the ugly."

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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

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HELENA, Mont. — As Republican legislative leaders in Montana girded for this year’s battle over whether to extend Medicaid expansion in the state, they took aim at one of the program’s biggest backers: hospitals.

If Montana’s hospitals wanted to extend the government health insurance program that cost taxpayers about $1 billion in 2024, and benefit from that revenue, they should give something back, such as additional community health care services and benefits, GOP leaders argued as the session began in January.

But instead, they found out just how formidable a political force the state’s hospitals can be. The hospitals not only helped steamroll Medicaid expansion through the legislature, but they also defeated nearly all attempts to add new requirements to the program and to place new regulations on hospitals themselves.

Hospitals opposed and defeated bills to impose price caps and to prominently post their charges and killed an attempt to redirect Medicaid funds raised by a hospital tax.

Most Montana hospitals are nonprofit organizations that are largely exempt from state income and property taxes. Legislators requested drafts of several bills to scrutinize hospitals’ “community benefits,” the services they provide for free or at discounted costs that justify their nonprofit status, but did not introduce them during the session.

The only such bill introduced has been significantly amended, at the hospitals’ request.

The state hospital lobbyists’ political pull has frustrated conservative lawmakers in leadership positions who are seeking more oversight of and transparency from the hospitals.

“Hospitals don’t seem to want to come to the table to discuss anything, whether it’s transparency, controlling costs, or providing more information to the public on services,” said Republican state Sen. Greg Hertz, who sponsored the price-cap bill that was rejected on the Senate floor this month.

Hospitals say they’re willing to debate ways to improve health care in Montana, and they point to Medicaid expansion as a program whose benefits flow to all corners of the state.

Yet when it comes to regulations they regard as onerous or criticism that they’re uncooperative partners on health care policy, the hospitals aren’t shy about pushing back.

“I don’t think I’ve ever been approached by any of them on reforming the health care system,” Montana Hospital Association president and CEO Bob Olsen said of the hospitals’ critics in the legislature. “I think that we’ve demonstrated that we work on all kinds of health policies.”

Republicans hold big majorities this legislative session and their conservative leaders — most of whom opposed extending Medicaid expansion — have often seen hospitals as a political foe.

But Montana’s hospitals have always been a strong lobby in the state, with bipartisan appeal. The state’s 63 hospitals employ about 30,000 people, according to the MHA, including many of the state’s physicians, and have multiple lobbyists at the Capitol, both on their own and through the hospital association.

They also have a strong ally in state Rep. Ed Buttrey, a moderate Republican who also is on the board of directors of Benefis Health System. Buttrey sponsored the original 2015 Montana Medicaid expansion bill and bills to renew the program in 2019 and this year.

In the past year, hospitals worked to form a coalition with businesses, health clinics, physician groups, insurers, and advocates for people with low incomes to push for extension of Medicaid expansion, which provides government health coverage to about 74,500 low-income, nondisabled Montanans.

Medicaid expansion had been set to expire this June, but the bill extending it breezed through the legislature, passing by comfortable margins in February, with bipartisan support. Republican Gov. Greg Gianforte signed it into law last month.

The MHA has a political action committee that donates to multiple lawmakers of both parties. In 2024, it paid particular attention to allies of Medicaid expansion.

The PAC gave $61,000 to the Montana Democratic Party and $75,000 to a political committee that supported moderate Republicans in contested GOP legislative primaries last June, according to filings with the state commissioner of political practices.

The majorities that passed Medicaid expansion in February included every Democrat in the legislature and many of the moderate Republicans supported by the political committee financed partly by the MHA.

Democrats also have been voting almost universally against bills that would impose new regulations on hospitals.

Hertz’s bill, which would have capped larger hospitals’ prices at 300% of the Medicare rate for most procedures, failed on the Senate floor this month on a 26-24 vote. All but one Democrat and nine Republicans voted against it.

State Sen. Cora Neumann, a Democratic member of the Senate Public Health, Welfare and Safety Committee, also voted against a bill requiring nonprofit hospitals to show that their community benefits meet or exceed the value of their property tax exemptions.

Neumann said she supports better access to affordable care in Montana but that “the policies we have been presented with are not well thought out and raise concerns for me about government overreach.”

State Rep. Jane Gillette, a Republican who chaired the legislative panel overseeing health care spending in the state budget, tried last month to redirect a small portion of Medicaid expansion funds — $7 million a year — to certain hospitals. The money is part of $365 million generated annually by a tax on hospital services, and the corresponding federal match, according to Olsen, the hospital association leader.

Half of the $7 million would go to smaller, independent hospitals and the other half would be distributed to hospitals showing “exceptional health outcomes and efficiencies,” she said.

The House Appropriations Committee agreed March 24 to insert her proposals into the session’s main budget bill.

But a week later — after hospitals lobbied against the change — the same committee torpedoed language in a separate bill that would have implemented the changes. The next day, on the House floor, all but one Democrat and 25 Republicans formed a two-thirds majority to remove the funding change from the budget bill.

“That tells you what a stronghold the hospitals have,” Gillette said. “Even a slight variation to our current system is not acceptable to them.”

Olsen said the change would have taken money from some larger hospitals and moved it elsewhere, and not necessarily to the smaller hospitals Gillette hoped to help.

“She approached us, but never tried to work with us,” he said. “It wasn’t going to reach those hospitals that she wanted to reach.”

Senate President Matt Regier, a Republican, made a last attempt to insert Gillette’s amendment into the state budget bill on the Senate floor on April 17, but it was rejected on a 27-23 vote, with all 18 Democrats and nine Republicans voting no.

Hospitals are, however, working with Regier on his community-benefit reporting measure — the last-standing bill that might impose new regulations on hospitals.

The bill says if the community benefits reported by nonprofit hospitals don’t equal or exceed the value of their exemption from property taxes, they must pay the difference into a fund that would be distributed to small, “critical access” hospitals.

During the bill’s initial hearing April 2, Regier — a Medicaid expansion opponent and sometimes sharp critic of the hospitals — said he was open to amendments that hospitals might find acceptable.

The original bill cleared the Senate April 5 on a party-line, 30-18 vote, with Republicans in favor. Then, in a House committee meeting on April 17, Republicans attached amendments that had the hospitals’ blessing and sent the bill to the House floor.

The changes delay the law’s effective date until 2027 and more specifically define the community benefits that must be reported and the potential property tax liability to which hospitals must match their benefit.

Olsen said the MHA will support the amended bill.

“The truth of it is, hospitals have always far exceeded the tax exemption for community benefits, on the spending they do,” he said. “Some might fall short, from time to time — but over the long haul, they exceed those exemptions.”

Regier’s attempt to quantify the amount and compare it to nonprofit hospitals’ tax exemption is not unreasonable, Olsen said: “I’m confident hospitals can do it.”

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

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HHS and FDA announced a series of new measures to phase out all petroleum-based synthetic dyes from the nation’s food supply.

Eboni Tomasek expected to take home her newborn the day after he was born in a San Jose hospital. But, without explanation, hospital staff said they needed to stay a second night. Then a third. A nurse said her son had jaundice. Then said that he didn’t. She wondered if they had confused her with another African American mother. In any event, why couldn’t she and the baby boy she’d named Ezekiel go home?

No one would say. “I asked like three times a day. It was brushed off,” Tomasek said, relaying her story by phone as she cradled Ezekiel, now 6 months old, in their San Jose apartment. She was told only that more tests were being run to ensure “everything’s good before you leave.”

She knew that her intensifying anger and fear about the holdup could raise her blood pressure, that Black pregnant women and new mothers are especially vulnerable to hypertension, and that it could kill her. Distraught, she called the person she most trusted to calm her, a caseworker for Santa Clara County’s Black Infant Health program.

“She really did help me to stay centered,” Tomasek said of the caseworker, who tracked her health throughout the pregnancy. “I felt a lot better.”

Since 2000, approximately 14,000 families have participated in Santa Clara County’s Black Infant Health program and related Perinatal Equity Initiative, both aimed at decreasing racial disparities in maternal and infant health. Enrolled mothers are assigned caseworkers and nurses who visit them at home to monitor blood pressure and other vital signs, help with breastfeeding, and screen infants for developmental delays. The mothers also attend support groups to learn skills to buffer the well-documented effects of racism in obstetric care.

The programs have measurably improved the health of enrolled women over the past decade, county data from 2024 shows, reducing rates of maternal hypertension — a leading cause of pregnancy-related deaths — by at least 30% and increasing screenings for other potentially life-threatening conditions.

Experts in the field and program participants stress that this work is urgent — in California, Black women are at least three times as likely as white women to die from pregnancy-related causes, and, nationally, Black infants have the highest rates of preterm birth and mortality.

While advocates for Black mothers laud the programs’ results as cause for optimism, they are concerned that the climate against diversity, equity, and inclusion, or DEI, initiatives could impede progress. Efforts to improve the health of this at-risk population have been targets of private lawsuits before, but since President Donald Trump took office, he has demanded the termination of all “‘equity-related’ grants” and threatened federal litigation against programs he claims illegally favor one racial group over another — even when they are designed to save lives, as is the case with the Santa Clara efforts.

Santa Clara County has received most of the $1 million-plus in federal funding it expects for Black Infant Health and the Perinatal Equity Initiative programs for the fiscal year ending in June. But county officials say it’s unclear how much, if any, of the remaining money — which comes from the federal health department’s Health Resources and Services Administration and Centers for Medicare & Medicaid Services — is at risk amid federal anti-DEI policies and the recent cuts at the Department of Health and Human Services. The status on funding for the coming fiscal year is also unknown, county officials said.

Santa Clara stands to lose more than $11 million in public health funds due to the federal cuts, including money used to help deliver health services to underserved communities. A list of some of the federal grants already terminated includes millions of dollars from at least three programs in other states focused on Black birth outcomes.

Any decrease in federal funding for these types of programs could have dire consequences, said Angela Aina, cofounder and executive director of Black Mamas Matter Alliance. “We will likely see an increase in deaths,” she predicted.

Aina’s group pilots research and promotes public policy on behalf of 40 U.S. community-based organizations focused on Black maternal health. Member programs connect pregnant women to health care, counseling, and nutritional and breastfeeding advice, among other things.

If these services are cut, advocates fear, the progress made toward reducing racial disparities in birth outcomes could backslide. KFF research has found that eliminating such focused efforts could exacerbate the inequities, worsen the nation’s health, and increase health care costs overall.

“Our stakeholders are in a state of confusion right now because the federal workers that still have a job are not allowed to communicate, or there’s some kind of muzzle on their communication,” Aina said. “We don’t know — are we going to receive the rest of those grant funds?”

When asked how the state would respond to federal budget cuts to programs like Black Infant Health, Brian Micek, a California Department of Public Health spokesperson, said only that the agency remains “committed to protecting Californians’ access to the critical services and programs they need” and steadfast in its mission to “advance the health and well-being of California’s diverse people and communities.”

Requests for comment from the federal departments responsible for the grants funding Santa Clara’s programs went unanswered.

Communications directors from groups working on reducing racial disparities in birth outcomes declined to be interviewed for this article, citing fears of retribution.

Tonya Robinson, program manager for Black Infant Health, stands defiant in the face of these threats. She sees the federal government’s anti-DEI crusade as an invitation to practice the very skills they teach.

“Our program is working,” Robinson said. “And the way it’s working is by empowering women, giving women voices to help them stand up for what is right, and to recognize discrimination and the impact of structural racism on their bodies.”

The government’s antagonism toward her work inspires Robinson to soldier on calmly as a role model for the women she serves.

“We’re continuing to forge ahead,” Robinson said. “We want to make sure that we can be an example of how to manage stress at this time, in front of our clients.”

Evidence surfaced that childbirth was deadlier for African American women than white women more than a century ago. But the issue did not gain significant public attention until 2018, when celebrities like Beyoncé and Serena Williams began airing their harrowing birth stories, highlighting the striking vulnerability of Black pregnant women and new mothers, even those with unlimited means.

In 2021, then-President Joe Biden proclaimed a week in April Black Maternal Health Week. A presidential proclamation marking that week in 2024 read that “when Black women suffer from severe injuries or pregnancy complications or simply ask for assistance, they are often dismissed or ignored in the health care settings that are supposed to care for them.”

Eboni Tomasek certainly felt ignored.

Three days after giving birth in September — and after her Santa Clara caseworker reminded her she had a right to know why she wasn’t being released — a nurse finally explained that Tomasek’s blood pressure had been too high for the hospital to safely discharge her.

Had she been white, Tomasek believes, the staff would have informed her sooner. “I feel like they were being racist,” she said. She credited her training through Black Infant Health with her ability to calm herself and help lower her blood pressure, allowing her to leave that day with Ezekiel.

Jamila Perritt, president and CEO of Physicians for Reproductive Health, believes that the poor health outcomes Black women and infants face have historical roots and will change only with the help of programs that, like those in Santa Clara, address conditions facing Black women.

“What we’re seeing in terms of maternal mortality are race-bound conditions,” said Perritt, an obstetrician who co-chairs Washington, D.C.’s Maternal Mortality Review Committee. “Our policies cannot be race-blind if we’re attempting to address them.”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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

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They’re the fixers, the ones who step in when Affordable Care Act enrollees have a problem with their coverage, like a newborn incorrectly left off a policy or discovering that a rogue broker had signed them up or switched their plan without consent.

Specially trained caseworkers help resolve such issues, which might otherwise cause consumers to rack up large doctors’ bills or prevent them or their family members from getting care. Now, though, the broad federal reduction in force set in motion by the Trump administration has cut the ranks of those caseworkers, slashing two out of six divisions of caseworkers, according to one affected worker and a former Centers for Medicare & Medicaid Services official familiar with the situation, Jeffrey Grant.

Currently, the number of ACA enrollees is at an all-time high of 24 million. The ACA — known as Obamacare — has long drawn disfavor from Republicans and Trump himself. The health law faces additional changes next year that, if adopted, could sow confusion and more problems. Consumers would face a new learning curve with extra paperwork and rules. And the caseworker cuts might extend the time needed to resolve any difficulties.

“It impacts not only our jobs, but all these people we serve,” said one New York City-based caseworker, who was let go in a Feb. 14 purge affecting federal employees in their probationary periods. “Usually, we would have on average 14 days to take care of a case that was very difficult, although the urgent cases would be solved within two to three business days. It will now be delayed so much more. Whole teams got wiped out completely.”

NPR and KFF Health News are not naming the two affected workers in this article because they fear professional or personal repercussions for speaking to the media.

The two teams of caseworkers were dismantled in a haphazard fashion that left some workers without an official notice but locked out of their computers.

The cuts have demoralized caseworkers, whose jobs demand a grasp of complex and arcane health insurance rules in a little-known government department that most consumers don’t interact with — CMS’ Exchange Customer Solutions Group — until they need help.

“The loss in staffing is going to reduce the ability for people to get through” to caseworkers after contacting the marketplace or other organizations for help, said Jackie Kiger, executive director of Pisgah Legal Services, a nonprofit that provides legal and ACA help for North Carolina consumers and is facing a budget reduction under a separate effort by the Trump administration to cut “navigator” funding by 90%. Navigators are government-funded nonprofits that help people enroll in the ACA or resolve problems with coverage.

The federal force reduction aims to decrease the number of employees at agencies within the Department of Health and Human Services from 82,000 to 62,000, including the Centers for Disease Control and Prevention, the Food and Drug Administration, the National Institutes of Health, and CMS.

CMS, which oversees the ACA and other government health programs, will lose about 300 workers, including about 30 caseworkers scattered nationwide. The cuts come amid thousands of other federal job losses, including front-line workers across an array of agencies, from Social Security field offices to the National Park Service.

In a press release, HHS estimated its reduction in force will save taxpayers $1.8 billion a year. No one from CMS responded to KFF Health News’ questions about the caseworker reductions.

What Will Be Affected?

When consumers have a problem with their ACA plan, their first step is usually to call the federal or state marketplace on which they purchased coverage.

Those call centers can handle basic questions about plans purchased on the federal exchange, which serves 31 states. (State marketplaces handle their own complex cases and don’t rely on federal caseworkers.)

When someone calls the federal marketplace 800 number with coverage problems, the inquiry probably winds up on a caseworker’s desk, said one affected caseworker. That employee received a reduction-in-force notice several days after losing access to their work computer on April 1.

Caseworkers usually don’t speak directly with consumers, the worker said. Using information sent over by the federal marketplace — including notes taken when consumers called in with problems, as well as ACA applications — they handle or oversee consumer requests, such as canceling a plan or adding a member.

One of the last problems handled by that caseworker involved a child born in November who was not added correctly to the family’s plan for 2024, meaning any care the child received during the last two months of the year was not covered and the family risked being stuck with the bills.

“This person did everything right, including calling the marketplace within 60 days to report the birth and add the newborn to their coverage,” said the worker, who was quickly able to resolve it because it was a marketplace error.

The worker, who is now soured on federal employment and will look for a new job in the private sector, said caseworkers handled an average of 30 issues a day, but that in recent months the number kept climbing, heading past 45, and grew even more intense after the Feb. 14 dismissal of probationary employees.

“It’s not an easy job,” the worker said, noting the challenge of constantly evolving rules and policies governing health plans.

Ferreting Out Fraud

In the past year, caseworkers have dealt with cases involving unauthorized enrollments or switching, a problem that ticked up in late 2023, according to KFF Health News investigations, and continued through much of last year, resulting in at least 274,000 complaints to CMS through August. The complaints centered on practices by rogue brokers who enrolled or switched coverage for consumers without their express knowledge. That could leave them without access to their health provider networks or drug coverage, or even facing a tax bill.

Though it is unclear how many such complaints fell to a federal caseworker, some improperly switched consumers want to be restored into plans they had originally chosen, while others want them canceled.

“I have seen people who were enrolled and every two or three months a broker would switch them to a different plan,” said the caseworker who was locked out in early April. “The more health plans they were enrolled in, the more difficult it was to handle on the back end.”

New hires spend months learning the ropes.

The New York-based worker let go in February during her probationary period said she had joined CMS in October and spent three months in training. Just about a month after completing that training, she was let go — a bitter irony, she said, because she had sought stability in a job with the federal government, having experienced a layoff during her private-sector career.

“I took a huge pay cut — over $40,000 — when I went from the private sector into the government,” said the mother of three whose husband serves in the military. Her federal salary was about $76,000, which is not high for an expensive market like the New York metropolitan area. “But I took it as an opportunity to get in the door and move up. Then, boom, I get hit with another layoff.”

“I can only imagine how hard it is for people with 10 to 15 years with the government who are banking on it for retirement,” she said.

Starting next year, the Trump administration has proposed several changes to the ACA, including ending year-round eligibility for very low-income applicants, requiring additional financial and eligibility documentation, and charging some people a monthly $5 fee when auto-reenrolled in coverage until they confirm their eligibility.

Such changes will “make things harder, so there you will have more things that go wrong,” said Grant, the former CMS official, who founded Schedule F Healthcare Strategies after leaving CMS. “You will then also have fewer caseworkers to handle the work.”

We’d like to speak with current and former personnel from the Department of Health and Human Services or its component agencies who believe the public should understand the impact of what’s happening within the federal health bureaucracy. Please message KFF Health News on Signal at (415) 519-8778 or get in touch here.

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SACRAMENTO, Calif. — California has halted a court-ordered medical parole program, opting instead to send its most incapacitated prisoners back to state lockups or release them early.

The unilateral termination is drawing protests from attorneys representing prisoners and the author of the state’s medical parole legislation, who say it unnecessarily puts this vulnerable population at risk. The move is the latest wrinkle in a long-running drive to free those deemed so ill that they are no longer a danger to society.

“We have concerns that they cannot meet the needs of the population for things like memory care, dementia, traumatic brain injury,” said Sara Norman, an attorney who represents the prisoners as part of a nearly three-decade-old federal class-action lawsuit. “These are not people who are in full command and control of their own surroundings, their memories — they’re helpless.”

Caring for a rapidly aging prison population is a growing problem across the United States. It is twice as expensive to imprison older people than those younger, according to Johns Hopkins University researchers, and prisoners 55 and older are more than twice as likely to have cognitive difficulties as non-incarcerated older adults.

Medical parole is reserved for the sliver of California’s 90,000 prisoners who have a “significant and permanent condition” that leaves them “physically or cognitively debilitated or incapacitated” to the point they can’t care for themselves, according to the state parole board. Prisoners who qualify — excluded are those sentenced to death or life without parole — can be placed in a community health care facility instead of state prison.

Attorneys said the roughly 20 parolees the state has returned to lockup need significant help performing basic functions of daily life, with some in wheelchairs or suffering from debilitating mental or physical disabilities. They say outside facilities have the capacity to provide more compassionate and humane care to very ill prisoners.

Kyle Buis, a California Correctional Health Care Services spokesperson, characterized the program as “on pause” as patients return to in-prison facilities and as officials anticipate increasing their use of the compassionate release program. Prisoners granted compassionate release have their sentences reduced and are released into society, while those on medical parole remain technically in custody.

“There were multiple considerations that went into this decision,” Buis said. “Our growing ability to support those with cognitive impairment inside of our facilities was one factor.” Democratic Gov. Gavin Newsom also cited “eliminating non-essential activities and contracts” to save money.

While nearly every state now has a medical parole law, they are rarely used, according to the National Conference of State Legislatures. One common reason is eligibility. Texas, for instance, screened more than 2,600 prisoners in 2022 but approved just 58 people. Officials also often face procedural hurdles, according to the Vera Institute of Justice, a national nonprofit research and advocacy group.

Some states, however, have tried to expand medical parole programs. Michigan did so because an earlier version of the law proved too difficult to use, resulting in the release of just one person. New York has some of the nation’s broadest criteria for release but is among states struggling to find nursing home placements for parolees.

California’s first effort to free prisoners deemed so incapacitated that they are no longer dangerous began in 1997 with a little-used process that allowed corrections officials to seek the release of dying prisoners. But that program resulted in the release of just two prisoners in 2009. The medical parole program was officially created by a state law that took effect in 2011 and was expanded in 2014 to help reduce prison crowding so severe that federal judges ruled it was harming prisoners’ physical and mental health.

Nearly 300 prisoners had been granted medical parole since July 2014, state officials reported. The average annual cost per medical parolee was between about $250,000 and $300,000 in 2023, Buis said. And despite lawmakers’ expectations when they started the program, he said, Medi-Cal — California’s Medicaid program, which is partly funded by the federal government — did not reimburse the state for their care because they were still considered incarcerated.

California has had a rollercoaster relationship with its sole nursing home contractor for medical parolees. The state ended its contract with Golden Legacy Care Center in Sylmar at the end of 2024, Newsom reported in January in his summary of the state’s 2025-26 budget.

In 2021, prison officials said they were sending dozens of paralyzed and otherwise disabled prisoners back to state prisons and limiting medical parole, blaming a federal rule change that barred any restrictions on prisoners in such facilities. The move came after state public health inspectors fined Golden Legacy for handcuffing an incapacitated patient’s ankle to the bed in violation of state and federal laws.

Golden Legacy did not return repeated telephone and email requests for comment. Buis said state officials “continuously monitored care at Golden Legacy, and we never had concern for the quality of care provided.”

Attorney Rana Anabtawi, who also represents prisoners in the class-action suit, toured Golden Legacy’s medical parole building with Norman in November and saw caregivers offering memory care patients special art classes and a “happy feet” dance party.

She felt it “was a much better place for our patients than being in prison — there appeared to be regular programming aimed at engaging them, there were no officers walking around, the patient doors were open and unlocked, patients had general freedom of movement within their building.”

Over the past several years, the California Department of Corrections and Rehabilitation has built up its capacity to service those with severely compromised health. The state created two of its own memory care units in men’s prisons, a 30-bed unit in the California Health Care Facility in Stockton in 2019 and a 35-bed unit in the California Medical Facility in Vacaville in 2023. The Central California Women’s Facility in Chowchilla provides up to 24-hour skilled nursing care for women with life-limiting illnesses including dementia.

Yet Norman fears the in-prison facilities are a poor substitute.

“They’re nowhere near enough and they are inside prisons, so there’s a limit to how compassionate and humane they can be,” she said.

In addition to the 20 returned to state prisons when the contract expired, Buis said, one was paroled through the standard process, while 36 were recommended for compassionate release. Of those, 26 were granted compassionate release, eight were denied, and two died before they could be considered.

The use of compassionate release increased under a law passed in 2022 that eased the criteria, including by adding dementia patients. Last year, 87 prisoners received compassionate release. By contrast, during the six years before the new law, just 53 were freed. Officials expect about 100 prisoners each year will qualify for compassionate release, Buis said.

Compassionate release would allow them to “sort of die with dignity,” said Daniel Landsman, vice president of policy for the criminal justice advocacy group FAMM, previously known as Families Against Mandatory Minimums, and ensure “that the California prison system is not turning into a de facto hospice or skilled nursing facility.”

Mark Leno, who authored California’s medical parole law when he was a Democratic state senator, criticized prison officials for ending their use of the law without legislative approval and instead just terminating the Golden Legacy contract. He also railed against returning very ill patients to prisons, a decision he called “perfectly inhumane.”

“Is it just cruel punishment and retribution or is this thoughtful execution of the law put in place by the legislature?” he said.

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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

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The assisted living facility in Edina, Minnesota, where Jean Peters and her siblings moved their mother in 2011, looked lovely. “But then you start uncovering things,” Peters said.

Her mother, Jackie Hourigan, widowed and developing memory problems at 82, too often was still in bed when her children came to see her midmorning.

“She wasn’t being toileted, so her pants would be soaked,” said Peters, 69, a retired nurse-practitioner in Bloomington, Minnesota. “They didn’t give her water. They didn’t get her up for meals.” Her mother dwindled to 94 pounds.

Most ominously, Peters said, “we noticed bruises on her arm that we couldn’t account for.” Complaints to administrators — in person, by phone, and by email — brought “tons of excuses.”

So Peters bought an inexpensive camera at Best Buy. She and her sisters installed it atop the refrigerator in her mother’s apartment, worrying that the facility might evict her if the staff noticed it.

Monitoring from an app on their phones, the family saw Hourigan going hours without being changed. They saw and heard an aide loudly berating her and handling her roughly as she helped her dress.

They watched as another aide awakened her for breakfast and left the room even though Hourigan was unable to open the heavy apartment door and go to the dining room. “It was traumatic to learn that we were right,” Peters said.

After filing a police report and a lawsuit, and after her mother’s 2014 death, Peters in 2016 helped found Elder Voice Advocates, which lobbied for a state law permitting cameras in residents’ rooms in nursing homes and assisted living facilities. Minnesota passed it in 2019.

Though they remain a contentious subject, cameras in care facilities are gaining ground. By 2020, eight states had joined Minnesota in enacting laws allowing them, according to the National Consumer Voice for Quality Long-Term Care: Illinois, Kansas, Louisiana, Missouri, New Mexico, Oklahoma, Texas, and Washington.

The legislative pace has picked up since, with nine more states enacting laws: Connecticut, North Dakota, South Dakota, Nevada, Ohio, Rhode Island, Utah, Virginia, and Wyoming. Legislation is pending in several others.

California and Maryland have adopted guidelines, not laws. The state governments in New Jersey and Wisconsin will lend cameras to families concerned about loved ones’ safety.

But bills have also gone down to defeat, most recently in Arizona. For the second year, a camera bill passed the House of Representatives overwhelmingly but, in March, failed to get a floor vote in the state Senate.

“My temperature is a little high right now,” said state Rep. Quang Nguyen, a Republican who is the bill’s primary sponsor and plans to reintroduce it. He blamed opposition from industry groups, which in Arizona included LeadingAge, which represents nonprofit aging services providers, for the bill’s failure to pass.

The American Health Care Association, whose members are mostly for-profit long-term care providers, doesn’t take a national position on cameras. But its local affiliate also opposed the bill.

“These people voting no should be called out in public and told, ‘You don’t care about the elderly population,’” Nguyen said.

A few camera laws cover only nursing homes, but the majority include assisted living facilities. Most mandate that the resident (and roommates, if any) provide written consent. Some call for signs alerting staffers and visitors that their interactions may be recorded.

The laws often prohibit tampering with cameras or retaliating against residents who use them, and include “some talk about who has access to the footage and whether it can be used in litigation,” added Lori Smetanka, executive director of the National Consumer Voice.

It’s unclear how seriously facilities take these laws. Several relatives interviewed for this article reported that administrators told them cameras weren’t permitted, then never mentioned the issue again. Cameras placed in the room remained.

Why the legislative surge? During the covid-19 pandemic, families were locked out of facilities for months, Smetanka pointed out. “People want eyes on their loved ones.”

Changes in technology probably also contributed, as Americans became more familiar and comfortable with video chatting and virtual assistants. Cameras have become nearly ubiquitous — in public spaces, in workplaces, in police cars and on officers’ uniforms, in people’s pockets.

Initially, the push for cameras reflected fears about loved ones’ safety. Kari Shaw’s family, for instance, had already been victimized by a trusted home care nurse who stole her mother’s prescribed pain medications.

So when Shaw, who lives in San Diego, and her sisters moved their mother into assisted living in Maple Grove, Minnesota, they immediately installed a motion-activated camera in her apartment.

Their mother, 91, has severe physical disabilities and uses a wheelchair. “Why wait for something to happen?” Shaw said.

In particular, “people with dementia are at high risk,” added Eilon Caspi, a gerontologist and researcher of elder mistreatment. “And they may not be capable of reporting incidents or recalling details.”

More recently, however, families are using cameras simply to stay in touch.

Anne Swardson, who lives in Virginia and in France, uses an Echo Show, an Alexa-enabled device by Amazon, for video visits with her mother, 96, in memory care in Fort Collins, Colorado. “She’s incapable of touching any buttons, but this screen just comes on,” Swardson said.

Art Siegel and his brothers were struggling to talk to their mother, who, at 101, is in assisted living in Florida; her portable phone frequently died because she forgot to charge it. “It was worrying,” said Siegel, who lives in San Francisco and had to call the facility and ask the staff to check on her.

Now, with an old-fashioned phone installed next to her favorite chair and a camera trained on the chair, they know when she’s available to talk.

As the debate over cameras continues, a central question remains unanswered: Do they bolster the quality of care? “There’s zero research cited to back up these bills,” said Clara Berridge, a gerontologist at the University of Washington who studies technology in elder care.

“Do cameras actually deter abuse and neglect? Does it cause a facility to change its policies or improve?”

Both camera opponents and supporters cite concerns about residents’ privacy and dignity in a setting where they are being helped to wash, dress, and use the bathroom.

“Consider, too, the importance of ensuring privacy during visits related to spiritual, legal, financial, or other personal issues,” Lisa Sanders, a spokesperson for LeadingAge, said in a statement.

Though cameras can be turned off, it’s probably impractical to expect residents or a stretched-thin staff to do so.

Moreover, surveillance can treat those staff members as “suspects who have to be deterred from bad behavior,” Berridge said. She has seen facilities installing cameras in all residents’ rooms: “Everyone is living under surveillance. Is that what we want for our elders and our future selves?”

Ultimately, experts said, even when cameras detect problems, they can’t substitute for improved care that would prevent them — an effort that will require engagement from families, better staffing, training and monitoring by facilities, and more active federal and state oversight.

“I think of cameras as a symptom, not a solution,” Berridge said. “It’s a band-aid that can distract from the harder problem of how we provide quality long-term care.”

The New Old Age is produced through a partnership with The New York Times.

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

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