More changes lie ahead that make it important for those getting subsidies in 2026 to track their income and take steps to protect against that kind of financial hit.

First, the basics of how the subsidies work.

Enrollees pay a percentage of their household income toward their health insurance premiums based on a sliding scale, ranging in 2025 from nothing for very low-income people to 8.5% at higher income levels. Subsidies, usually paid directly to insurers, cover the rest.

The income calculation done during open enrollment is an estimate of what a household thinks it will earn in the coming year. At tax time, ACA enrollees must reconcile what they received in subsidies with what they actually earned. If their income rose, they might owe some of the subsidies back.

But don’t skip filing! People who get ACA subsidies must file tax returns no matter their income, and that is becoming even more important: The Trump administration people from subsidy eligibility if they have gone two consecutive years without filing, and it is proposing lowering that to one year.

Beware Surprise Tax Bills

All enrollees who received subsidies for ACA coverage in 2025 — — need to include a special form, the , with their tax filings. That form is used to reconcile a person’s actual income with the amount of subsidies they received, information the IRS mails them on a separate, . Subsidy amounts are based in part on the income projections they made when they enrolled in their ACA plans.

And that can lead to surprises. Some may find they get money back if their income was less than they estimated. But, if their income went above their initial or updated estimates, they probably qualify for less in assistance and will have to pay money back.

Groups that help people file their taxes say it’s not always easy for people to accurately estimate their income for the year ahead, especially those who run their own businesses, work multiple jobs, or have work that comes with varying hours.

Clients will say, “I can make anywhere between $20,000 and $45,000 next year. I just don’t know,” said Katie Alexander, director of training and volunteers for the health and economic opportunity program at Pisgah Legal Services, a western North Carolina nonprofit that provides free tax and health insurance help to people with low incomes.

Still, for taxes being filed now for the 2025 tax year, on what many people must repay.

That cap is $375 for a single individual who earned less than $31,300 in 2025, or . The maximum owed under that sliding scale for people whose income is on the higher end of the range is $1,625 for an individual and $3,250 for a family.

There is no repayment cap for people earning more than four times the federal poverty level — totaling $62,600 in 2025 for an individual or $106,600 for a family of three — so they could owe back all amounts that exceeded their eligibility.

“The amount is just so staggering for folks,” Alexander said.

One woman whom Pisgah staff helped with pulling together her taxes for 2025 made just above $50,000, which was more than she initially estimated. Her repayment was capped at $1,625, Alexander said. Without that cap, she would have owed $4,000, a substantial chunk of her annual income.

Plan Ahead: The Rules Will Be Tougher Next Tax Season

Congressional Republicans’ One Big Beautiful Bill Act, signed into law by President Donald Trump last summer, . That means come next year’s tax season, there will be no sliding-scale limit to how much people could owe back in subsidies for 2026 if their income exceeds their projections.

“That’s just going to be absolutely devastating,” Alexander said.

There are at least two other things to keep in mind, both stemming from covid-era enhanced tax credits, which expired at the end of last year because Congress did not extend them. One is that the amount of household income people must pay toward their premiums this year before subsidies kick in has risen to just over 2% on the low end of the income scale and up to nearly 10% for higher-income earners.

The second is that households earning over four times the federal poverty level no longer qualify for ACA subsidies.

The biggest financial hit could be felt by enrollees whose income rises enough during the year to exceed four times the poverty level. In that case, they would owe back all the subsidies they receive in 2026.

And that could be a lot.

In 2025, for example, the average monthly premium for ACA coverage was $619, but the average enrollee received subsidies worth enough to offset all but $74 of that, according to the .

There’s another twist for some. Because the enhanced credits were not extended, people are paying, on average, double the amount toward their premiums this year, so they may be looking to add to their incomes to cover the cost. A found that 43% of people who remained enrolled in coverage this year are planning to work more hours or get additional work to cover those costs.

“That makes sense, but it can also present a risk of being eligible for less subsidy money than they thought, or even mean they would have to repay the entire tax credit,” said Cynthia Cox, senior vice president and director of the Program on the ACA at KFF, a health information nonprofit that includes ºÚÁϳԹÏÍø News.

People can update their projected income at the marketplace website as it changes during the year.

Pisgah staff are calling people they’ve worked with and saying, “Please, please, please, if your income changes, call us so we can adjust your income through the marketplace,” Alexander said.

As much as possible, keep track of income during the year. This isn’t easy, especially for workers who don’t have a job with regular paychecks.

“If you’re meeting with a CPA to talk about taxes, have a conversation to make sure you’re making enough money to afford your costs, but not too much to lose eligibility for a subsidy,” Cox said. “Contributing toward a retirement plan or a health savings account can lower part of your income that counts toward subsidy eligibility.”

Others might choose to dial back their work hours or forgo a new client contract.

“If taking that extra shift means putting you over the line of 400% of the federal poverty level and that’s going to cost you $10,000 in repayments, maybe don’t take that shift,” said Jason Levitis, a senior fellow at the Urban Institute who follows ACA and tax policy issues.

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Ollie’s parents, who adopted her in 2020, tried to sign her up for a clinical trial using — which genetically reprograms a patient’s white blood cells to help them fight cancer — at UNC Health in Chapel Hill, North Carolina, an hour-and-a-half drive from their home in Eden.

Her mother, Britany Super, described it as Ollie’s “last option.”

But in early March, Super recalled, UNC Health’s financial office told them the bad news: The state’s new insurance for kids in foster care wasn’t going to pay for the treatment.

In December, Ollie became one of hundreds of thousands of kids nationwide enrolled in a special kind of public health insurance for people served by the foster care system. That insurance, known as a specialized managed care plan, is part of Medicaid, the federal-state program that covers health costs for people with low incomes or disabilities.

North Carolina is one of 14 states with such specialized foster care plans, according to the National Academy for State Health Policy. The plans differ by state, but each is meant to expand coverage for children in the foster care system — and for kids who were adopted out of it, such as Ollie and her siblings.

Yet, as in other states that have struggled when adding such plans, North Carolina families have faced hurdles obtaining care. Thousands of doctors whose services were covered under Medicaid were not included in the specialized plan — which is costing the state $3.1 billion over four years — when it rolled out on Dec. 1. That left guardians and parents of kids adopted out of the system scrambling to figure out whether they would have to find new health care providers or new insurance.

In North Carolina, the insurance plan’s stumbles have added another layer of complication around health care issues. The state — like many others — is already over expected Medicaid cuts in the wake of congressional Republicans’ One Big Beautiful Bill Act. A separate Medicaid funding shortfall also prompted a push to cut care providers’ reimbursement rates.

Texas, which established its plan 18 years ago, that its foster families also had a hard time finding doctors on the insurance. In Florida, researchers for the state reported as early as 2016 that there was .

Illinois’ plan by the Centers for Medicare & Medicaid Services over a lack of access to care. Research concluded that California’s plan children with adequate mental health services. Georgia’s access problems alarmed state officials enough to calling for children to be removed from the plan and put back on other Medicaid plans.

But such specialized plans for kids in foster care continue to gain traction. Four states have started their own plans in the past five years, said , the senior director of children and family health at the National Academy for State Health Policy, and she said it’s likely more will adopt them soon.

showing how these programs are faring, Medicaid policy analysts said. It’s therefore difficult to know why they’ve run into rollout problems or whether they’ve improved access to care. That makes the plans risky, said , a research professor at Georgetown University’s Center for Children and Families.

“The states that are going in this direction, unless they have data to support it, are experimenting,” Schneider said. “They’re putting all their eggs in one basket, so they need to pay close attention.”

Rough Rollout

North Carolina’s specialized insurance plan for foster kids experienced problems the day it rolled out.

The state automatically enrolled Ollie and about 32,000 other people in , called . North Carolina officials had said the program would improve health care access for foster children, who often have medically complex needs and move frequently.

But foster families quickly began hearing that their health care providers were not taking the insurance, according to several families who recounted their experiences fighting to get their children’s procedures covered under the plan.

UNC Health, a state-run health system that is , with nearly 4,400 physicians, initially, which is why it told Super that Ollie’s CAR T-cell treatment wouldn’t be covered.

After more than two months of limbo for families, UNC Health ultimately in mid-March with Blue Cross Blue Shield of North Carolina, which runs the plan.

But some North Carolina doctors still don’t accept Healthy Blue insurance.

, interim deputy secretary for North Carolina’s Medicaid program, said her office to expand its network, even though it already has what she called an “adequate” number of providers. North Carolina’s health department and Blue Cross Blue Shield did not answer ºÚÁϳԹÏÍø News’ questions about how many providers are covered by the new insurance.

“We welcome qualified providers who want to join,” said Blue Cross Blue Shield of North Carolina spokesperson Sara Lang.

Other problems . As thousands of health care records move over to a statewide database managed by Healthy Blue, children’s doctors are struggling to track their patients’ medical histories, said foster care advocates and pediatricians. Parents reported problems seeing health records, finding themselves locked out of online portals. Others couldn’t access prescriptions. Surgeries got delayed. Appointments were canceled.

“Network management for any plan is an ongoing process,” Lang said.

All this meant added red tape and heartache for the caregivers of children like Ollie with complex medical needs — those the .

Gearing Up

Cancer has been part of Ollie’s life since she was 2. She was in the process of getting adopted out of foster care when she began chemotherapy and radiation treatments, then received two stem cell transplants, Super recalled.

Surgeons installed temporary tubes in a vein near her heart and a feeding tube in her abdomen. Her hair fell out as the treatment intensified, and a thin layer of skin peeled off, forcing her new family to wear surgical gowns and gloves when they wanted to be close.

“She doesn’t remember life outside of going to doctors and being in a hospital,” Super said.

Ollie still has a port in her chest ready for whenever she needs intravenous medicine, and her monthly doctor appointments are about to become weekly. During an emergency room visit in mid-March, doctors told Super her daughter’s cancer had spread. Ollie will need more chemotherapy before her body is ready for the more advanced treatment.

But the Supers, thrown into uncertainty for more than two months, still feel some relief. They’re preparing for back-and-forth drives for the CAR T-cell therapy treatments in Chapel Hill. And they’re grateful, even if it means Ollie will spend at least five more weeks in and out of a hospital.

Reliable health insurance will be vital for Ollie, and Healthy Blue leaders said they are talking with doctors, parents, and others to make sure the plan is working. Her procedures carry multimillion-dollar price tags, her mother said, but having her bills seamlessly covered allows the family to focus on Ollie’s treatment.

“The biggest challenges for her will be in the first few months of the study,” said Super, who knows the therapy’s side effects include fever, fatigue, and confusion. “But I’m hoping that after that, the CAR T-cells will do their job and fight the cancer and she can continue to have a playful, active life.”

That means, they hope, the girl could be at home more often with her five siblings and the three family dogs, including Remy, a border collie mix who is Ollie’s favorite.

Super relishes those precious moments for her daughter — “being a kid and doing kid things.”

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The boys sat in one waiting room and then another. Two hours and 20 minutes passed before the two were isolated, according to obtained by ºÚÁϳԹÏÍø News. Then two more hours ticked by.

As the sun rose, an emergency room doctor called the state epidemiologist and described the symptoms. The public health official told him to keep the kids in the hospital and quarantine them. Shortly after that call, the patients were diagnosed.

It was measles.

Hospital staff gave the father instructions on how to quarantine the family and sent them home.

The virus exposed at least 26 other people in the hospital that January day, federal investigators determined. Health inspectors for CMS investigated the measles infections and other failures in care and concluded that the twins’ symptoms should have triggered an isolation procedure for which Mission Hospital staffers had trained seven months earlier. CMS designated Mission in “” for the exposures and other unrelated issues, one of the most severe sanctions a hospital can face, threatening to pull federal funding unless it remedied the problems.

A spokesperson for Mission said its staff was trained to manage airborne sickness and is following federal rules.

As U.S. hospitals face an increasing risk of encountering measles, and pressure to immediately spot it, health care workers face an unusual barrier: Many don’t know what it looks like.

“There’s a word, ‘morbilliform’ — it means measles-like, and there are lots of viruses that can cause a rash that looks like a measles rash in children,” said Theresa Flynn, a pediatrician in Raleigh and the president of the North Carolina Pediatric Society. In 30 years in health care, she’s never seen a measles case, she said.

North Carolina has reported more than 20 cases since mid-December, and more than 3,000 people nationwide have been infected since the beginning of 2025.

Children in areas with low immunization rates to outbreaks, triggering public health campaigns to promote the measles vaccine. CMS Administrator Mehmet Oz encouraged vaccination in a .

, mumps, and rubella vaccine, a person has a 3% chance of getting the virus after exposure. If exposed, an unvaccinated person has a 90% chance of being infected, according to the CDC. It can take a week or two before someone infected with measles shows symptoms.

But for the past year, the Trump administration has . Health and Human Services Secretary Robert F. Kennedy Jr. was a longtime anti-vaccine activist before taking office, and under his leadership the Centers for Disease Control and Prevention has reduced the number of shots recommended to children.

After measles erupted in West Texas last year, Kennedy publicly for the virus, including steroids, antibiotics, and cod liver oil.

Infectious disease experts and doctors said federal policies have left health care workers to lean on their own experience or guidance from their state public health systems to fight a disease that many are preparing to see for the first time and that initially may behave like the common cold.

“As measles becomes more common, all of us are leveling up in our ability to recognize and immediately respond to suspected measles,” Flynn said.

Three C’s

Officially, the U.S. has maintained “measles elimination status” since 2000, meaning the U.S. has avoided significant spread of the virus. After outbreaks in Texas, Arizona, Utah, and now South Carolina, the nation is on track to lose that designation before the year is out. tie elimination status to a lack of a continuous viral spread persisting for 12 months.

One county in South Carolina, an hour’s drive from Asheville, has had in the current outbreak — more than Texas reported in all of 2025.

Symptoms of measles, a virus that , can include fever, cough, a blotchy rash, and red, watery eyes. Researchers consider measles among the most contagious diseases, and the virus may remain active for up to two hours after an infected person leaves a room.

It can be lethal, with .

In 2025, two children in Texas and one adult in New Mexico died of measles.

Along with tracking data, the CDC on its website for diagnosing measles. State public health agencies and some counties have developed dashboards tracing the disease as it surfaces in such places as hospitals, schools, grocery stores, and airports. Large hospital systems developed staff training protocols last year and shared them with area clinics.

Look for the three C’s, : cough, coryza (cold symptoms), and conjunctivitis (pink eye). According to CMS inspection records, HCA Healthcare, which owns Mission Hospital, trained Mission staff on the three C’s early last year. On top of failing to isolate the twin patients right away, Mission staff didn’t have a designated area for patients with respiratory symptoms, federal inspectors found.

The CDC advises health workers to immediately place patients with measles or suspicious symptoms in a special isolation room, where airflow is controlled inward. The Mission patients were separated from other patients only by plastic partitions, according to the CMS records.

Mission spokesperson Nancy Lindell said the hospital was equipped and staffed to manage airborne illnesses like measles.

“Our hospital has been working with state and federal health officials on proactive preparedness, and we are following guidance provided by the CDC,” Lindell said.

(Dogwood Health Trust, a private foundation established as part of HCA’s purchase of Mission Health, helps fund ºÚÁϳԹÏÍø News coverage.)

Most U.S. clinics and hospitals have never experienced measles cases, said Patsy Stinchfield, a former president of the National Foundation for Infectious Diseases and a nurse practitioner. She called CMS’ Immediate Jeopardy penalty for Mission “extreme,” given the virus can be so difficult to identify.

“In the middle of winter right now, measles looks like every other viral respiratory infection that kids come in with,” Stinchfield said.

The CDC has been less communicative in the past year with clinics about their response to outbreaks, said health workers and infectious disease experts. This disconnect began soon after Trump took office, according to a ºÚÁϳԹÏÍø News investigation finding that health officials in West Texas were unable to talk with CDC scientists as measles surged last February and March.

“We certainly do not feel the support or guidance from the CDC right now,” said Brigette Fogleman, a pediatrician at Asheville Children’s Medical Center, where staff members have come up with their own method of staving off the virus: screening patients over the phone and in their cars before a visit.

In response to questions about how the CDC is supporting health care organizations during the measles resurgence, spokesperson Andrew Nixon said that “state and local health departments have the lead in investigating measles cases and outbreaks” and that the CDC provides support “as requested.” He pointed to numerous guides and simulation tools the agency has developed as the virus has spread.

Jennifer Nuzzo, an epidemiologist and director of the Pandemic Center at Brown University, acknowledged that diagnosing measles is a major challenge, emphasizing that coordination among public health agencies is critical in overcoming that challenge.

Stinchfield attributed the spread of measles to CDC leaders’ lack of communication to clinics and to the public — no ads on buses, no social media campaigns, no sense of urgency. “When you are at the highest level of measles cases in 30 years, we should be seeing lots more from our federal government,” Stinchfield said. “And I think it’s harming kids and causing an inordinate amount of work and expense that really doesn’t belong in health care right now.”

State Prepares for More Measles Cases

In North Carolina’s Buncombe County, home to Asheville and Mission Hospital, health officials had counted seven measles cases by mid-February and anticipated many more, according to state epidemiologist Zack Moore. It’s unclear how many of those are connected to the Mission exposure.

hosted by the county, urging families to get their children vaccinated, debunking vaccine misinformation, and updating parents on local case numbers.

Days before, a local private school had quarantined about 100 students after an exposure. were immunized, according to state data.

At Fogleman’s clinic, parents are asked to wait in their vehicles with their children, and staffers come out to screen them there. Some parents resist vaccination and note recently weakened federal recommendations around measles vaccines , she said.

Kennedy handpicked the committee members who made those recommendations, with several members having spread medical misinformation in the past.

One parent recently told a nurse, “It’s only measles. It doesn’t kill anybody,” Fogleman said.

That’s not true, her team must explain.

As the clinic holds families in the parking lot, trying to figure out whether symptoms point to the dangerous virus, it’s difficult to get the message across, Fogleman said, especially when the nation’s top disease agency hasn’t conducted a widespread information campaign about the risks from measles — or the vaccine’s ability to almost entirely prevent it.

“We can’t change the past,” Fogleman said. “All we can do is try to educate and move forward.”

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An older couple in flannel pajamas sat together in the waiting room. A toddler waved as affecting her clinic — and many others across the nation — will only get worse.

Hall’s clinic, the Celo Health Center, is one of seven locations that make up the , which was supposed to receive up to $10 million over the next decade through , a federal program to improve primary care, , by providing payments for physicians to address patient needs. Her organization planned to use the money to hire staff, build better connections with local specialists, and buy more vehicles to shuttle patients to appointments, according to its CEO, .

Then, in March, clinic administrators received an email during the Department of Government Efficiency’s whirlwind of federal cuts: The Centers for Medicare & Medicaid Services would soon shutter Making Care Primary, a year into what was supposed to be a 10-year program. Nearly 700 practices in eight states . North Carolina had 23 clinics and centers in the program, the most of any state, followed by Washington, New Mexico, and New York. Doctors who had signed up for it said they were stunned.

“I’m angry, but more than that, I am so very sad,” . “It’s heartbreaking — to have an already inadequate health care system be made even more inadequate, to throw away opportunities to improve, even a little.”

Now, CMS’ Innovation Center, which created Making Care Primary, is set to launch a new 10-year program to boost primary care called the , known by its acronym LEAD. In that program, funding will be sent to health care organizations, often managed by companies, instead of directly to primary care doctors and clinics.

CMS wouldn’t say how much the programs cost. But it maintained that eliminating Making Care Primary reduced spending to improve quality of care. Nixing Making Care Primary and three other programs at the agency — including another focused on primary care — would , CMS said at the time.

Making Care Primary “was not on track to meet its intended savings goal,” CMS spokesperson Alexx Pons said. Innovation Center models to save money over time, in part by improving patients’ access to health care and helping them avoid costly hospital visits. Practices that signed up for Making Care Primary and want to join LEAD will have to apply for the program beginning in March.

Yet Making Care Primary’s elimination has created skepticism among doctors. The change exacerbated their fears about uncertain funding overseen by the Trump administration as covid-era Medicaid provisions , enhanced Affordable Care Act subsidies , and Congress passed more funding cuts in President Donald Trump’s One Big Beautiful Bill Act.

, a physician and the CEO of the Mountain Area Health Education Center in western North Carolina, which serves 16 mostly rural counties, questions how his organization is supposed to plan for the future “when the future can just go away so quickly.”

A Chance To Change Primary Care

The U.S. is facing a . In 2023, more than 100 million people in the U.S. to a primary care doctor in their area, the National Association of Community Health Centers reported. Some states, such as Colorado, have passed legislation more primary care funding at the state level.

The health care shortage where Hall works in western North Carolina is , she said she often makes personal calls to doctors to schedule appointments.

Hall said one of her patients is an uninsured woman who has been waiting six months for a colonoscopy. The patient has severe anemia and possibly gastrointestinal bleeding. Hall has been trying to get the patient somewhere that offers free or discounted care.

The additional funding through Making Care Primary would have allowed the network of clinics to improve its communication systems with specialists. Coordination of this kind of care is one of the challenges Making Care Primary was supposed to address.

“I’m still not sure what we’re going to do for her,” Hall said.

Making Care Primary sought to create an efficient payment system for primary care clinics and help them better track patients, allowing doctors to be less burdened by administrative duties and focus more on care.

It provided bonuses to primary care doctors for maintaining their patients’ health, as well as flexible funding that could be used to improve patients’ quality of life in numerous ways. That included patients’ transportation to health care facilities, food vouchers, moving expenses, or help with utility bills.

Spokespeople for health departments in the states that signed up for Making Care Primary said some doctors have since lost trust in federal support.

“It can be difficult for providers, especially smaller community base practitioners, to pool resources to invest in non-clinical development,” said Cadence Acquaviva, a spokesperson for New York’s health agency. “An abrupt change can damage the confidence in future programs’ sustainability.”

An Uncertain Future

The CMS Innovation Center tests health care models to find those that improve care and lower costs for the health system and patients. The center created Making Care Primary after testing it as one of those models. It’s unclear whether the models have ultimately saved money; a 2023 Congressional Budget Office report for increasing spending by nearly double the amount the CBO projected the center would save in taxpayer money over 10 years.

, who directed the center under President Joe Biden, said Making Care Primary ended so early that it could not have produced any meaningful data on whether the patients it served became healthier.

She acknowledged that the program didn’t draw in as many clinics as she hoped and lagged in enrollment. But if it were her decision to make, “I would have said, ‘It’s not enough time,’” Fowler said. “It takes more than a year to get the numbers.”

Hathaway said his Mountain Area Health Education Center signed on to Making Care Primary believing it could change the profession: It promised to ensure practices received immediate, consistent federal money to enhance primary care. Other models made that funding more difficult to obtain.

It’s unclear whether LEAD will draw more enrollment than Making Care Primary, but Hathaway, who has years of experience with elements included in LEAD, is skeptical of the program.

“Anytime you put multiple layers of bureaucracy between us and the patients and the dollars, it just costs more,” he said.

Hall said doctors “see the suffering firsthand” but often feel helpless in a system that cuts people off from primary care. She has been frustrated with the nation’s health care system, she said, which she feels focuses on profits over patients.

“We should be rolling out the red carpet for everybody to come see their family doctor and keep them out of the emergency room,” Hall said. “That would keep costs lower for the whole system. I’m wearing rose-colored glasses now, but I really believe that.”

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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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The ambulances frequently travel back and forth to in Asheville, the largest and most central hospital in the region. Trips can take more than two hours, according to Mark Snelson, director of , the local emergency medical service.

“When we get busy and all three of them are gone, we have no ambulances in our county,” he said.

Snelson and others in Madison County aren’t seeking more ambulances. They want a hospital closer than Mission. And the state agrees. In 2022, North Carolina Department of Health and Human Services officials said Madison and three other mountain counties needed 67 more acute care hospital beds. The state raised that to 93 beds in 2024, then to 222 by Oct. 15.

But the only indication of a new hospital thus far is a 25-acre field of graded dirt with a sign planted beside the highway reading “FUTURE HOME OF AdventHealth Weaverville.”

For the past three years, Mission Hospital’s owner has contested Florida-headquartered ’s attempt to build the hospital on land bought for $7.5 million in rural Weaverville, just minutes south of Madison County. It was , an event that would have defied the of rural hospital closures.

The irony is that the very law that calls for the new hospital — the state’s certificate of need, or CON, law — has been used to prevent further construction. Such laws are intended to cap unfettered health care expansion by allowing new hospitals and expansions only when a state can document a need for them. But the legal process has tied up the proposed Weaverville hospital in court, just as other such laws have done with projects in ; ; and .

All states had certificate of need laws until 1987, when the federal government repealed a mandate requiring them. Today, North Carolina is one of with the laws still on the books. Twelve others have repealed them or let them expire, and some, and , have significantly weakened theirs amid concerns they limit health care access and boost costs. President Donald Trump’s Federal Trade Commission and Department of Justice are among those questioning the need for the laws.

In North Carolina, too, opposition to the state’s certificate of need law has surfaced in both the General Assembly, where a has been dormant since April, and more prominently in the state Superior Court.

But some , health care economists, and certificate of need lawyers argue that, though the laws create bureaucracy that can delay projects, that’s not justification to do away with them.

The principle behind certificates of need is to hold at bay what is unnecessary expansion and price inflation brought on by a free market, which makes health care more expensive for everyone.

“If the principle is worth preserving, don't abandon the principle,” said , a health care attorney with the Benesch law firm and former counsel for . “Improve the process to allow the principle to flourish.”

Who Should Fill the Need?

Mission Health is the largest health care network and the largest employer in the Tar Heel State’s share of the Appalachians. Nashville-based bought the century-old, nonprofit, six-hospital system for $1.5 billion in 2019, converting it to a for-profit operation that serves an 18-county region. (The Dogwood Health Trust, a nonprofit established as part of HCA’s purchase of Mission Health, helps fund ºÚÁϳԹÏÍø News’ coverage.)

Though AdventHealth already owns one hospital in the North Carolina mountains about a 30-minute drive from the Weaverville site, its bid to build a new one represents a threat to HCA’s stronghold. Mission argues it is best positioned to meet the needs the state says exist in the Madison County region.

“Not all acute care beds are the same,” Mission Health spokesperson Nancy Lindell said. “Instead of adding more beds at facilities that are unable to provide the complex medical and surgical care needed, the region would be better served by expanding bed capacity at Mission Hospital.”

An eastern North Carolina eye surgeon’s against the state’s health agency and top state officials alleged the state’s certificate of need law “has nothing to do with protecting the health or safety of real patients.” The ophthalmologist, Jay Singleton, has argued the law prevented him from performing surgeries at his own center because the state didn’t see a need to duplicate services already provided at the local hospital, where he was obligated to operate.

In early November, Republican state Treasurer Brad Briner, the , and several academics who study such laws nationally filed amicus briefs supporting Singleton’s case and urging a judge to reject the state’s attempt to dismiss it.

“I’ve characterized CON law as a permission slip to compete,” said , a George Mason University economics and law professor who co-authored the brief. “It’s as if, when a McDonald’s wanted to open up a shop next to Burger King, they have to go to the state regulator to ask if that’s OK.”

Stratmann argued that, instead of , more competition would give hospitals and providers greater leverage in negotiating with insurance companies.

That view aligns with a stance the federal government has held for almost 40 years. With varying degrees of fervor under Democratic and Republican leadership, the Federal Trade Commission and Department of Justice have argued that the laws are anticompetitive and bad for consumers. The Justice Department did not respond to questions about its current position, and the FTC declined to comment on the record.

“CON laws create barriers to entry and expansion, limit consumer choice, and stifle innovation,” the Federal Trade Commission wrote in an April letter to Rhode Island Gov. Dan McKee, a Democrat, as the state’s legislature considered, but ultimately abandoned, amendments to its certificate of need law. “For these reasons, the Agencies have consistently suggested that states repeal or retrench their CON laws.”

‘It’s Personal’

In a to Trump and congressional leaders, Senate Democrats named five North Carolina hospitals on a list of rural hospitals in danger of closing if the president’s then-pending spending and tax-cut legislation, called the One Big Beautiful Bill, became law, citing research from the .

Two of the five North Carolina hospitals on that list, and , are part of the Mission Health system. Both had three consecutive years of negative profit margins, like hundreds of others on the list. Lindell, the Mission Health spokesperson, said HCA is committed to keeping those two facilities open.

Even so, Madison County Health Department Director Tammy Cody said the needs in the region remain and the certificate of need appeals process has slowed down getting help.

“This isn’t theoretical — it’s personal," she said. "Every delay means a mother in labor risks a longer ride, an elder with chest pain waits longer for help, or a worker injured on the job faces unnecessary complications.”

AdventHealth spokesperson Victoria Dunkle said the hospital system supports the state’s law partly because it “protects rural access to health care and ensures the community has a voice in the process.” The legal process has kept families waiting, she said, but AdventHealth plans to move forward with the Weaverville hospital “as soon as possible.”

Snelson, the ambulance service director, voiced a question many in the region have asked since the hope of a new rural hospital surfaced.

“Why is it a bad thing for another hospital to come in here to take some of the stress off of Mission?” he asked. “Within a day of it opening, it's going to be full.”

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