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 fraudÌýin , , , 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. Ìý

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 Â鶹ŮÓÅ, a national health information nonprofit that includes Â鶹ŮÓÅ 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.”

Â鶹ŮÓÅ Health News’ Hayat Norimine contributed to this report.

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Health and Human Services Secretary Robert F. Kennedy Jr., a longtime anti-vaccine activist who rails against Big Pharma and ultraprocessed food, is the leader of the movement. And Americans’ .

Plus, polls show about reducing health care costs than MAHA priorities such as ending vaccine mandates and promoting raw milk.

Enhanced Affordable Care Act subsidies expired at the end of 2025, fueling a nationwide affordability debate. Roughly 24 million people buy coverage on the Affordable Care Act marketplaces, and many are now facing premium payments more than double what they faced last year.

After taking a political back seat in recent years, health care may dominate the 2026 election races.

Credits

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Now, though, it seems unlikely to become state law. In November, a vote to advance beyond a legislative subcommittee failed. Four out of six Republicans on the Senate Medical Affairs Committee subpanel refused to vote on the measure.

Republican state Sen. Jeff Zell said during a November subcommittee hearing that he wanted to help “move this pro-life football down the field and to save as many babies as we can.” Still, he could not support the bill as written.

“What I am interested in is speaking on behalf of the South Carolinian,” he said, “and they’re not interested in this bill right now or this issue right now.”

While that bill stalled, it signals that abortion will continue to loom large during 2026 legislative sessions. More than three years after the Supreme Court overturned Roe v. Wade, measures related to abortion have already been prefiled in several states, including Alabama, Arizona, Florida, Missouri, and Virginia.

Meanwhile, the South Carolina bill also exposed a rift among Republicans. Some GOP lawmakers are eager to appeal to their most conservative supporters by pursuing more restrictive abortion laws, despite the lack of support for such measures among most voters.

Until recently, the idea of charging women who obtain abortions with a crime was considered “politically toxic,” said Steven Greene, a political science professor at North Carolina State University.

Yet introduced “abortion as homicide” bills during 2024-2025 legislative sessions, many of which included the death penalty as a potential sentence, according to Dana Sussman, senior vice president of Pregnancy Justice, an organization that tracks the criminalization of pregnancy outcomes.

Even though none of those bills was signed into law, Sussman called this “a hugely alarming trend.”

“My fear is that one of these will end up passing,” she said.

Less than a month after the bill stalled in South Carolina, — which would create criminal penalties for “coercion to obtain an abortion” — was prefiled ahead of the Jan. 13 start of the state’s legislative session.

“The issue is not going away. It’s a moral issue,” said state Sen. Richard Cash, who introduced the abortion bill that stalled in the subcommittee. “How far we can go, and what successes we can have, remain to be seen.”

‘Wrongful Death’

Florida law already bans abortion after six weeks of pregnancy. But a Republican lawmaker introduced for the “wrongful death” of a fetus. If enacted, the measure will allow parents to sue for the death of an unborn child, making them eligible for compensation, including damages for mental pain and suffering.

The bill says neither the mother nor a medical provider giving “lawful” care could be sued. But anyone else deemed to have acted with “negligence,” including someone who helps procure abortion-inducing pills or a doctor who performs an abortion after six weeks, could be sued by one of the parents.

In Missouri, a constitutional amendment to legalize abortion passed in 2024 with 51.6% of the vote. In 2026, state lawmakers are asking voters to repeal the amendment they just passed. A new proposed amendment would effectively reinstate the state’s ban on most abortions, with new exceptions for cases of rape, incest, and medical emergencies.

“I think that’s a middle-of-the-road, common sense proposal that most Missourians will agree with,” said , a Republican state representative who to put the measure on the ballot.

Lewis said the 2024 amendment went too far in allowing a legal basis to challenge all of Missouri’s abortion restrictions, sometimes called “targeted regulation of abortion providers,” or TRAP, laws. Even before Missouri’s outright ban, the number of abortions recorded in the state had dropped from to .

Meanwhile, Lewis backed another proposed constitutional amendment that will appear on the 2026 ballot. That measure would make it harder for Missourians to amend the state constitution, by requiring any amendment to receive a majority of votes in each congressional district.

One analysis suggested as few as any ballot measure under the proposal. Lewis dismissed the analysis as a “Democratic talking point.”

‘Gerrymandered’ Districts

Republican lawmakers aren’t necessarily aiming to pass abortion laws that appeal to the broadest swath of voters in their states.

Polling conducted ahead of Missouri’s vote in 2024 showed 52% of the state’s likely voters supported the constitutional amendment to protect access to abortion, a narrow majority that was consistent with the final vote.

In Texas, state law offers no exceptions for abortion in cases of rape or incest, even though a 2025 survey found 83% of Texans believe the procedure should be legal under those conditions.

In South Carolina, a 2024 poll found only 31% of respondents supported the state’s existing six-week abortion ban, which prohibits the procedure in most cases after fetal cardiac activity can be detected.

But Republicans hold supermajorities in the South Carolina General Assembly, and some continue to push for a near-total abortion ban even though such a law would probably be broadly unpopular. That’s because district lines have been drawn in such a way that politicians are more likely to be ousted by a more conservative member of their own party in a primary than defeated by a Democrat in a general election, said Scott Huffmon, director of the Center for Public Opinion & Policy Research at Winthrop University.

The South Carolina legislature is “so gerrymandered that more than half of the seats in both chambers were uncontested in the last general election. Whoever wins the primary wins the seat,” Huffmon said. “The best way to win the primary — or, better yet, prevent a primary challenge at all — is to run to the far right and embrace the policies of the most conservative people in the district.”

That’s what some proposals, including the “abortion as homicide” bills, reflect, said Greene, the North Carolina State professor. Lawmakers could vote for such a measure and suffer “very minimal, if any,” political backlash, he said.

“Most of the politicians passing these laws are more concerned with making the base happy than with actually dramatically reducing the number of abortions that take place within their jurisdiction,” Greene said.

Yet the number of abortions performed in South Carolina has dropped dramatically — by 63% from 2023 to 2024, when the state enacted the existing ban, according to data published by the state’s Department of Public Health.

Kimya Forouzan, a policy adviser with the Guttmacher Institute, which tracks abortion legislation throughout the country and advocates for reproductive rights, said South Carolina’s attempt to pass “the most extreme bill that we have seen” is “part of a pattern.”

“I think the push for anti-abortion legislation exists throughout the country,” she said. “There are a lot of battles that are brewing.”

Â鶹ŮÓÅ Health News correspondent Daniel Chang and Southern bureau chief Sabriya Rice contributed to this report.

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Vestida de azul y con un gran moño en sus rizos rubios, la niña de 3 años se sentó en el regazo de su madre pronunciando con cuidado el nombre de una compañerita de clase después de escuchar las palabras “mejor amiga”. Hace apenas unos meses, Gaile Osborne no esperaba que su hija adoptiva hiciera amistades en la escuela.

Diagnosticada con autismo a los 14 meses, Aubreigh Osborne comenzó este año a tener dificultades para controlar sus perretas y, en ocasiones, se autolesionaba. Su dificultad para interactuar socialmente hizo que su familia evitara salir en público. Pero este verano comenzó a recibir una terapia llamada de “análisis de comportamiento aplicado”, conocida como ABA en inglés, que suele utilizarse para ayudar a personas con autismo a mejorar sus habilidades sociales y de comunicación.

Desde entonces, empezó el preescolar, ha comido con mayor regularidad, logró dejar el pañal, acompaña a su madre al supermercado sin incidentes y conoció a quien es su mejor amiga. Todo eso, por primera vez en su corta vida.

“Eso es lo que ABA nos está dando: momentos de normalidad”, dijo Osborne.

Pero en octubre, las horas de terapia de Aubreigh se redujeron abruptamente de 30 a 15 por semana, como parte de una iniciativa estatal para recortar el gasto de Medicaid.

Otras familias en el país también han visto restringido su acceso a esta terapia mientras funcionarios estatales aplican recortes importantes al programa: el seguro de salud público que cubre a personas con bajos ingresos y con discapacidades. Carolina del Norte recortó en 10% los pagos a proveedores de ABA. Nebraska redujo casi 50% los pagos para algunos de estos servicios. En Colorado e Indiana, entre otros estados, también consideran reducciones.

Estos recortes llegan cuando el gasto de Medicaid en esta terapia se ha disparado en los últimos años. Los pagos por ABA en Carolina del Norte fueron de $122 millones en el año fiscal 2022 y en 2026, un aumento del 423%. En Nebraska, el gasto aumentó 1.700% en los últimos años. En Indiana, el incremento fue de 2.800%.

El aumento en el diagnóstico y la conciencia sobre el autismo ha hecho que más familias busquen tratamiento para sus hijos, que puede ir de 10 a 40 horas semanales de servicios, según Mariel Fernandez, vicepresidenta de asuntos gubernamentales del Consejo de Proveedores de Servicios para el Autismo ().

Además, la cobertura de esta terapia por Medicaid es relativamente reciente. El gobierno federal para el autismo en 2014, pero no todos incluían ABA, considerada por Fernandez como el “estándar de oro”, hasta 2022.

Déficits presupuestarios estatales y los casi $1.000 millones en recortes previstos en Medicaid, derivados de la Gran y Hermosa Ley (One Big Beautiful Bill Act) del presidente Donald Trump, han llevado a los estados a reducir el gasto en ABA y otras áreas en crecimiento dentro del programa.

También ha influido una serie de auditorías estatales y federales que pusieron en duda los pagos realizados a algunos proveedores de ABA.

Una del programa Medicaid en Indiana estimó pagos indebidos de al menos $56 millones en 2019 y 2020, señalando que algunos proveedores cobraron por horas excesivas, incluso durante la hora de la siesta.

Una auditoría similar en Wisconsin calculó pagos indebidos por al menos $18,5 millones entre 2021 y 2022. En Minnesota, las autoridades estatales tenían sobre proveedores de servicios para el autismo en el verano, a finales del año pasado como parte de una investigación por fraude a Medicaid.

Familias presentan batalla

Pero los esfuerzos por reducir el gasto en esta terapia también han generado rechazo entre las familias que dependen del tratamiento.

En Carolina del Norte, las familias de 21 niños con autismo presentaron una demanda judicial contra el recorte del 10% en los pagos a proveedores. En Colorado, un grupo de proveedores y padres por su decisión de requerir autorizaciones previas y reducir los pagos por la terapia.

Y en Nebraska, familias y defensores aseguran que los recortes —que van del 28% al 79%, según el tipo de servicio— podrían poner en riesgo el acceso al tratamiento.

“Sus hijos han tenido avances muy importantes y ahora los dejan en la estacada”, dijo Cathy Martinez, presidenta de , una organización sin fines de lucro con sede en Lincoln, Nebraska, que apoya a personas autistas y a sus familias.

Martinez pasó años abogando para que Nebraska exigiera cobertura para la terapia ABA, cuando su familia se tuvo que declarar en bancarrota por pagarla de su bolsillo para su hijo Jake.

Jake fue diagnosticado con autismo a los 2 años, en 2005, y comenzó a recibir ABA en 2006. Martinez atribuye a esta terapia el que Jake haya aprendido a leer, escribir, usar un dispositivo de comunicación asistida e ir al baño solo.

Para pagar el tratamiento, que costaba $60.000 al año, la familia pidió dinero prestado a un familiar, hipotecó su casa por segunda vez y terminó en bancarrota.

“Me dio muchísima rabia que mi familia tuviera que declararse en bancarrota para poder darle a nuestro hijo algo que recomendaron todos los doctores que lo vieron”, dijo Martinez. “Ninguna familia debería tener que elegir entre la bancarrota y ayudar a su hijo”.

Nebraska ordenó la cobertura de servicios para el autismo en 2014. Ahora, Martinez teme que los recortes lleven a los proveedores a dejar de ofrecer el servicio, limitando el acceso por el que tanto luchó.

Sus temores parecieron confirmarse a fines de septiembre, cuando Above and Beyond Therapy, uno de los mayores proveedores de ABA en Nebraska, notificó a las familias que dejaría de participar en el programa Medicaid del estado, debido a los recortes.

El sitio web de Above and Beyond ofrece servicios en al menos ocho estados. Según una , la empresa recibió más de $28.5 millones del programa Medicaid con administración privada de Nebraska en 2024. Eso representa aproximadamente un tercio del gasto total en ABA en el estado ese año, y cuatro veces más que el segundo proveedor más grande. Su director general, Matt Rokowsky, no respondió a las solicitudes de entrevista.

Una semana después de anunciar su retiro, la empresa cambió de opinión y decidió continuar ofreciendo servicios bajo Medicaid, citando “una enorme cantidad de llamadas, correos electrónicos y mensajes emotivos” en una carta enviada a las familias.

Danielle Westman, madre de Caleb, un adolescente de 15 años paciente de Above and Beyond que recibe 10 horas semanales de ABA en casa, se sintió aliviada con el anuncio. Caleb es semiverbal y tiene tendencia a alejarse de sus cuidadores.

“No voy a ir con ninguna otra empresa”, dijo Westman. “Muchas compañías de ABA quieren que vayamos a sus centros en horario de oficina. Mi hijo tiene mucha ansiedad, ansiedad muy alta, así que estar en casa, en su espacio seguro, ha sido increíble”.

Funcionarios de Nebraska que antes de los recortes, el estado tenía las tarifas de reembolso de Medicaid para ABA más altas del país y que los nuevos pagos siguen siendo competitivos en comparación con los estados vecinos, que el servicio “sea accesible y sostenible a futuro”.

, director estatal de Medicaid, dijo que su agencia sigue de cerca la situación y que no tenía conocimiento de proveedores que hubieran dejado el estado debido a los recortes. Afirmó que más proveedores han comenzado a operar en Nebraska desde que se anunciaron los cambios.

Uno incluso celebró los recortes. Corey Cohrs, CEO de , que tiene siete centros en el área de Omaha, criticó lo que considera una tendencia de algunos proveedores a ofrecer 40 horas de servicios por niño por semana, sin diferenciar necesidades. Lo comparó con recetar quimioterapia a todos los pacientes con cáncer, sin importar la gravedad, solo porque es el tratamiento más caro.

“Así se gana más dinero por paciente y no se toman decisiones clínicas reales para determinar el mejor camino”, expresó Cohrs.

Nebraska estableció un límite de 30 horas semanales de ABA sin revisión clínica adicional, y según Cohrs, las nuevas tarifas son viables para los proveedores, a menos que su modelo de negocios dependa exclusivamente de las altas tasas de Medicaid.

En Carolina del Norte, los servicios de ABA de Aubreigh Osborne fueron restablecidos principalmente gracias a la persistencia de su madre, quien llamó una y otra vez hasta lograr que el sistema cediera.

Y por ahora, Gaile Osborne no tendrá que preocuparse por las disputas legislativas que podrían afectar la atención de su hija. A principios de noviembre, un juez del Tribunal Superior del estado suspendió temporalmente los recortes a ABA mientras avanza la demanda presentada por las familias.

Osborne es directora ejecutiva de Foster Family Alliance, una importante organización de defensa del cuidado temporal en el estado, y fue maestra de educación especial durante casi 20 años. A pesar de su experiencia, no sabía cómo ayudar a Aubreigh a mejorar socialmente. Al principio, era escéptica sobre ABA, pero ahora ve en esta terapia un puente hacia el bienestar de su hija.

“No es perfecta”, dijo Osborne. “Pero el progreso que ha tenido en menos de un año es increíble”.

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Dressed in blue with a big ribbon in her blond curls, the 3-year-old sat in her mother’s lap carefully enunciating a classmate’s first name after hearing the words “best friend.” Just months ago, Gaile Osborne didn’t expect her adoptive daughter would make friends at school.

Diagnosed with autism at 14 months, Aubreigh Osborne started this year struggling to control outbursts and sometimes hurting herself. Her trouble with social interactions made her family reluctant to go out in public.

But this summer, they started applied behavior analysis therapy, commonly called ABA, which often is used to help people diagnosed with autism improve social interactions and communication. A tech comes to the family’s home five days a week to work with Aubreigh.

Since then, she has started preschool, begun eating more consistently, succeeded at toilet training, had a quiet, in-and-out grocery run with her mom, and made a best friend. All firsts.

“That’s what ABA is giving us: moments of normalcy,” Gaile Osborne said.

But in October, Aubreigh’s weekly therapy hours were abruptly halved from 30 to 15, a byproduct of her state’s effort to cut Medicaid spending.

Other families around the country have also recently had their access to the therapy challenged as state officials make deep cuts to Medicaid — the public health insurance that covers people with low incomes and disabilities. North Carolina attempted to cut payments to ABA providers by 10%. Nebraska cut payments by nearly 50% for some ABA providers. Payment reductions also are on the table in Colorado and Indiana, among other states.

Efforts to scale back come as state Medicaid programs have seen spending on the autism therapy balloon in recent years. Payments for the therapy in North Carolina, which were $122 million in fiscal year 2022, are in fiscal 2026, a 423% increase. Nebraska saw a 1,700% jump in spending in recent years. Indiana saw a 2,800% rise.

Heightened awareness and diagnosis of autism means more families are seeking treatment for their children, which can range from 10 to 40 hours of services a week, according to Mariel Fernandez, vice president of government affairs at the . The treatment is intensive: Comprehensive therapy can include 30-40 hours of direct treatment a week, while more focused therapy may still consist of 10-25 hours a week, released by the council.

It’s also a relatively recent coverage area for Medicaid. The federal government autism treatments in 2014, but not all covered ABA, which Fernandez called the “gold standard,” until 2022.

State budget shortfalls and the nearly $1 trillion in looming Medicaid spending reductions from President Donald Trump’s One Big Beautiful Bill Act have prompted state budget managers to trim the autism therapy and other growing line items in their Medicaid spending.

So, too, have a series of state and federal audits that raised questions about payments to some ABA providers. A of Indiana’s Medicaid program estimated at least $56 million in improper payments in 2019 and 2020, noting some providers had billed for excessive hours, including during nap time. A similar audit in Wisconsin estimated at least $18.5 million in improper payments in 2021 and 2022. In Minnesota, state officials had into autism providers as of this summer, after the late last year as part of an investigation into Medicaid fraud.

Families Fight Back

But efforts to rein in spending on the therapy have also triggered backlash from families who depend on it.

In North Carolina, families of 21 children with autism filed a lawsuit challenging the 10% provider payment cut. In Colorado, a group of providers and parents is over its move to require prior authorization and reduce reimbursement rates for the therapy.

And in Nebraska, families and advocates say cuts of the magnitude the state implemented — from 28% to 79%, depending on the service — could jeopardize their access to the treatment.

“They’re scared that they’ve had this access, their children have made great progress, and now the rug is being yanked out from under them,” said Cathy Martinez, president of the , a nonprofit in Lincoln, Nebraska, that supports autistic people and their families.

Martinez spent years advocating for Nebraska to mandate coverage of ABA therapy after her family went bankrupt paying out-of-pocket for the treatment for her son Jake. He was diagnosed with autism as a 2-year-old in 2005 and began ABA therapy in 2006, which Martinez credited with helping him learn to read, write, use an assistive communication device, and use the bathroom.

To pay for the $60,000-a-year treatment, Martinez said, her family borrowed money from a relative and took out a second mortgage before ultimately filing for bankruptcy.

“I was very angry that my family had to file bankruptcy in order to provide our son with something that every doctor that he saw recommended,” Martinez said. “No family should have to choose between bankruptcy and helping their child.”

Nebraska mandated insurance coverage for autism services in 2014. Now, Martinez worries the state’s rate cuts could prompt providers to pull out, limiting the access she fought hard to win.

Her fears appeared substantiated in late September when Above and Beyond Therapy, one of the largest ABA service providers in Nebraska, notified families it planned to terminate its participation in Nebraska’s Medicaid program, citing the provider rate cuts.

Above and Beyond’s website advertises services in at least eight states. The company was paid more than $28.5 million by Nebraska’s Medicaid managed-care program in 2024, according to a . That was about a third of the program’s total spending on the therapy that year and four times as much as the next largest provider. CEO Matt Rokowsky did not respond to multiple interview requests.

A week after announcing it would stop participating in Nebraska Medicaid, the company reversed course, citing a “tremendous outpouring of calls, emails, and heartfelt messages” in a letter to families.

Danielle Westman, whose 15-year-old son, Caleb, receives 10 hours of at-home ABA services a week from Above and Beyond, was relieved by the announcement. Caleb is semiverbal and has a history of wandering away from caregivers.

“I won’t go to any other company,” Westman said. “A lot of other ABA companies want us to go to a center during normal business hours. My son has a lot of anxiety, high anxiety, so being at home in his safe area has been amazing.”

Nebraska officials the state previously had the highest Medicaid reimbursement rates for ABA in the nation and that the new rates still compare favorably to neighboring states’ the services are “available and sustainable going forward.”

States Struggle With High Spending

State Medicaid Director said his agency is closely tracking fallout. Deputy Director said that while no ABA providers have left the state following the cuts, one provider stopped taking Medicaid payments for the therapy. New providers have also entered Nebraska since officials announced the cuts.

One Nebraska ABA provider has even applauded the rate cuts. Corey Cohrs, CEO of , which has seven locations in the Omaha area, has been critical of what he sees as an overemphasis by some ABA providers on providing a blanket 40 hours of services per child per week. He likened it to prescribing chemotherapy to every cancer patient, regardless of severity, because it’s the most expensive.

“You can then, as a result, make more money per patient and you’re not using clinical decision-making to determine what’s the right path,” Cohrs said.

Nebraska put a on the services without additional review, and the new rates are workable for providers, Cohrs said, unless their business model is overly predicated on high Medicaid rates.

In North Carolina, Aubreigh Osborne’s ABA services were restored largely due to her mother’s persistence in calling person after person in the state’s Medicaid system to make the case for her daughter’s care.

And for the time being, Gaile Osborne won’t have to worry about the legislative squabbles affecting her daughter’s care. In early December, North Carolina Gov. Josh Stein canceled all the Medicaid cuts enacted in October, citing lawsuits like the one brought by families of children with autism.

“DHHS can read the writing on the wall,” , announcing the state health department’s reversal. “That’s what’s changed. Here’s what has not changed. Medicaid still does not have enough money to get through the rest of the budget year.”

Osborne is executive director of Foster Family Alliance, a prominent foster care advocacy organization in the state, and taught special education for nearly 20 years. Despite her experience, she didn’t know how to help Aubreigh improve socially. Initially skeptical about ABA, she now sees it as a bridge to her daughter’s well-being.

“It’s not perfect,” Osborne said. “But the growth in under a year is just unreal.”

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MU Health Care, donde practican la mayoría de los médicos que utiliza su familia, estaba inmerso en una disputa contractual con Anthem, la aseguradora de salud de Wingler. El contrato vigente estaba a punto de expirar.

Entonces, el 31 de marzo, la mujer recibió un correo electrónico alertándola de que al día siguiente el hospital ya no estaría en la red de Anthem.

La noticia la dejó atónita.

“Sé que negocian contratos todo el tiempo… pero parecía un simple trámite burocrático que no nos afectaría. Nunca antes me habían excluido de la red de una aseguradora de esa manera”, comentó. El momento no pudo ser menos oportuno.

La consulta: Cuando la aseguradora de salud de una madre de Missouri no pudo llegar a un acuerdo con su hospital, la mayoría de sus médicos quedaron repentinamente fuera de la red. Se preguntaba cómo conseguiría que se cubriera la atención médica de sus hijos o cómo encontraría nuevos médicos. “Para una familia de cinco… ¿por dónde empezamos?” — Amber Wingler, 42 años, de Columbia, Missouri

La hija de Wingler, Cora, de 8 años, había estado teniendo problemas intestinales sin razón aparente. Las listas de espera para ver a varios especialistas pediátricos y tener un diagnóstico, desde gastroenterología hasta terapia ocupacional, eran largas: iban de semanas hasta más de un año.

(En un comunicado, el vocero de MU Health Care, Eric Maze, afirmó que el sistema de salud trabaja para garantizar que los niños con las necesidades más urgentes sean atendidos lo antes posible).

De repente, las consultas con los especialistas para Cora estaban fuera de la red de su seguro. A varios cientos de dólares cada una, el costo se habría disparado rápidamente. Los únicos otros especialistas pediátricos dentro de la red que Wingler encontró estaban en St. Louis y Kansas City, ambos a más de 120 millas de distancia.

Así que Wingler pospuso las citas médicas de su hija durante meses mientras intentaba decidir qué hacer.

En todo el país, las disputas contractuales son comunes, con más de 650 hospitales involucrados en conflictos públicos con aseguradoras desde 2021.

Y podrían volverse aún más frecuentes a medida que los hospitales se preparan para recortes de aproximadamente $1.000 millones en el gasto federal en salud, según lo estipulado por la ley insignia del presidente Donald Trump, promulgada en julio.

Los pacientes atrapados en una disputa contractual tienen pocas opciones viables.

“Existe un antiguo proverbio africano que dice: cuando dos elefantes pelean, la hierba se aplasta. Y, lamentablemente, en estas situaciones, a menudo los pacientes son la hierba”, afirmó Caitlin Donovan, directora de la Patient Advocate Foundation, una organización sin fines de lucro que ayuda a personas con dificultades para acceder a la atención médica.

Si te sientes aplastado bajo una disputa contractual entre un hospital y tu aseguradora, esto es lo que necesitas saber para protegerte financieramente:

1. “Fuera de la red” significa que probablemente pagarás más.

Las aseguradoras negocian contratos con hospitales y otros proveedores médicos para establecer las tarifas que pagarán por distintos servicios. Cuando llegan a un acuerdo, el hospital y la mayoría de los proveedores que trabajan allí pasan a formar parte de la red de la aseguradora.

La mayoría de los pacientes prefieren consultar con proveedores “dentro de la red” porque su seguro cubre parte, la mayor parte o incluso la totalidad de la factura, que podría ascender a cientos o miles de dólares. Si consultas con un proveedor fuera de la red, podrías tener que pagar la factura completa.

Si decides seguir con tus médicos habituales aunque estén fuera de la red, puedes consultar sobre la posibilidad de obtener un descuento por pago en efectivo y sobre el programa de asistencia financiera del hospital.

2. Las disputas entre hospitales y aseguradoras suelen resolverse.

, investigador de políticas de salud de la Universidad Brown, examinó 3.714 hospitales no federales en Estados Unidos y halló que, entre junio de 2021 y mayo de 2025, un 18% de ellos tuvo una disputa pública con una compañía de seguros de salud.

Cerca de la mitad de esos hospitales finalmente se retiraron de la red de la aseguradora, según los datos preliminares de Buxbaum. Sin embargo, la mayoría de estas rupturas se resuelven en uno o dos meses, agregó. Por lo tanto, es muy probable que tus médicos vuelvan a formar parte de la red, incluso después de una separación.

3. Podrías calificar para una extensión que te permita reducir costos.

Ciertos pacientes podrían calificar para una extensión de la cobertura dentro de la red, lo que se llama continuidad de la atención.

Puedes pedir esta extensión llamando a tu aseguradora, pero el proceso puede ser largo. Algunos hospitales han habilitado recursos para ayudar a los pacientes a solicitarla.

Wingler pasó por todo ese calvario por su hija: horas al teléfono, llenando formularios y enviando faxes.

Pero dijo que no tenía el tiempo ni la energía para hacerlo para todos los miembros de su familia.

“Mi hijo estaba en fisioterapia”, dijo. “Pero lo siento mucho, hijo, tú sigue con los ejercicios que tienes que hacer. No voy a pelearme para que tú también tengas cobertura, cuando ya estoy peleando por tu hermana”, se dijo.

También es importante tener en cuenta si se trata de una emergencia médica: en la mayoría de los servicios de urgencias, los hospitales de las tarifas de su red.

4. Puede que tengas que esperar para cambiar de aseguradora.

Quizás estés pensando en cambiarte a una aseguradora que cubra a tus médicos favoritos. Pero ten en cuenta que muchas personas que eligen sus planes de salud durante el período anual de inscripción abierta quedan atadas a su plan durante un año. Los contratos entre las aseguradoras y los hospitales no necesariamente coinciden con el año de tu plan.

Ciertos , como casarse, tener un hijo o perder el trabajo, pueden permitirte cambiar de seguro fuera del período anual de inscripción abierta, pero que tus médicos dejen de pertenecer a la red de tu seguro no se considera un acontecimiento de vida que te permita hacerlo.

5. Buscar un nuevo médico puede llevar mucho tiempo.

Si la ruptura entre tu aseguradora y el hospital parece definitiva, podrías considerar buscar una nueva lista de médicos y otros proveedores que estén dentro de la red de tu plan. ¿Por dónde empezar? Tu plan probablemente tenga una herramienta en línea para buscar proveedores dentro de la red cerca de donde vives.

Pero ten en cuenta que cambiar de médico podría significar esperar para establecerte como paciente de uno nuevo y, en algunos casos, tener que ir más lejos.

6. Vale la pena guardar los recibos.

Incluso si tu seguro y el hospital no llegan a un acuerdo antes de que expire su contrato, existe la probabilidad de que lleguen a un nuevo acuerdo.

Algunos pacientes deciden posponer sus citas mientras esperan. Otros mantienen sus citas y pagan de su propio bolsillo. Si es tu caso, guarda los recibos. Cuando las aseguradoras y los hospitales llegan a un acuerdo, este suele aplicarse retroactivamente, por lo que las citas que pagaste de tu bolsillo podrían estar cubiertas después de todo.

Fin de un suplicio

Tres meses después de que expirara el contrato entre la aseguradora de Wingler y el hospital, ambas partes anunciaron un nuevo acuerdo. Wingler se unió a la multitud de pacientes que programaron las citas que habían pospuesto durante la crisis.

En un comunicado, Jim Turner, vocero de Elevance Health, la empresa matriz de Anthem, escribió: “Abordamos las negociaciones enfocados en la equidad, la transparencia y el respeto por todos los afectados”.

Maze, de MU Health Care, dijo: “Comprendemos la importancia del acceso puntual a la atención pediátrica especializada para las familias y lamentamos profundamente la frustración que algunos padres han experimentado al intentar programar citas tras la resolución de las negociaciones de nuestro contrato con Anthem”.

Wingler se alegró de que su familia pudiera volver a ver a sus médicos, pero su alivio se vio atenuado por la determinación de no volver a encontrarse en la misma situación.

“Creo que seremos un poco más precavidos cuando llegue el período de inscripción abierta”, dijo Wingler. “Nunca nos habíamos preocupado por revisar nuestra cobertura de gastos de bolsillo porque no la necesitábamos”.

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Last winter, Amber Wingler started getting a series of increasingly urgent messages from the local hospital in Columbia, Missouri, letting her know her family’s health care might soon be upended.

MU Health Care, where most of her family’s doctors work, was mired in a contract dispute with Wingler’s health insurer, Anthem. The existing contract was set to expire.

Then, on March 31, Wingler received an email alerting her that the next day Anthem was dropping the hospital from its network. It left her reeling.

“I know that they go through contract negotiations all the time … but it just seemed like bureaucracy that wasn’t going to affect us. I’d never been pushed out-of-network like that before,” she said. Ìý