Montana is looking to fast-track Medicaid access for older adults who need help to stay in their homes or towns.

Medicaid, the joint federal-state health care program for low-income Americans, opens the door to services such as paying for help to prepare meals or shower safely. But applying for and obtaining that coverage can take weeks or months, leaving aging people in a dangerous limbo: too vulnerable to live at home without assistance, but too healthy to merit a hospital or nursing home bed.

Montana lawmakers drafted a bill for the legislative session that begins in January that would create a shortcut to that care. The Children, Families, Health, and Human Services Interim Committee’s proposal would allow older people and those with a physical disability who are likely eligible for Medicaid to start receiving in-home and community-based care while awaiting final approval.

The goal of presumptive eligibility is to avoid delays in providing stabilizing care outside of medical facilities. Supporters of the plan say local care is also a lot less expensive than hospital or nursing home care.

Montana would join at least 11 states that have presumptive eligibility for seniors and people with disabilities to access in-home care, according to AARP. Washington state began expediting Medicaid coverage in 2023 for people recently discharged from a hospital and plans to expand coverage further. Rhode Island authorizes such benefits to new long-term care applicants. And a law signed last winter in New Jersey means seniors there will have similar access.

People who are hospitalized or checked into a nursing home can struggle to find the middle-ground option for care they need.

Katy Mack, a spokesperson for the Montana Hospital Association, said bottlenecks in the process are difficult for patients, long-term care providers, and hospitals.

“Many elderly patients do ‘get stuck’ in hospitals waiting for transfer to a more appropriate level of care,” Mack said in an email. “This is due to a variety of issues, including staffing, bed availability, and appropriate payments from the patient’s source of health coverage.”

Tyler Amundson, executive director of Big Sky Senior Services, a nonprofit that helps seniors stay in their home, said in one case, a couple without the support they needed ended up in the hospital dozens of times over two months.

“There are a lot of seniors in our community struggling,” Amundson said. “They’ll go home from a hospital with just enough care to get by for a little while.”

The nation’s pool of older Americans is getting bigger. With age comes more medical complications. People 65 or older have the highest rate of preventable hospitalizations, and medical emergencies risk worse health outcomes.

Rising health care costs are fueling anxiety among tens of millions of seniors, with 1 in 10 living below the federal poverty level. Older adults are struggling to pay the combined cost of housing and medical care, and some become homeless.

For years, states have had the option through the Affordable Care Act to allow qualified hospitals to extend presumptive eligibility to some adults based on their income, on top of the opportunity that most states give pregnant women and children. But in states such as Montana, people 65 and older haven’t been included. States need a federal waiver to expand who qualifies for that early access.

Alice Burns, who researches Medicaid issues at KFF, a health information nonprofit that includes KFF Health News, said widening presumptive eligibility for in-home and community-based care gained momentum during the covid-19 pandemic.

“It’s easy to understand why,” Burns said. “When we had the fatality rates in nursing facilities that we did, it was like, OK, we cannot send these people to the nursing facilities unnecessarily.”

The Montana proposal would, after state training, allow tribal entities, area agencies on aging, and hospitals, among others, to screen patients for presumptive eligibility. Approved patients would begin receiving services while state health officials review their applications.

The draft bill spells out some covered services, such as meal delivery and in-home medical equipment. Lawmakers noted it’s not clear if the proposal would help people move into long-term care, such as assisted living facilities, which offer daily support rather than medical treatment.

Montana officials don’t have an estimate for how much the temporary coverage would cost. Jon Ebelt, a spokesperson for the Montana Department of Public Health and Human Services, declined to comment on the proposal.

Mike White is a co-owner of Caslen Living Centers, which has six small assisted living facilities across central and southwestern Montana. His company no longer accepts Medicaid applicants until their coverage is final, and White said it’s not alone. He said that process can take anywhere from three to six months due to cumbersome paperwork, which he said is too long for small businesses to go without pay.

State officials have said delays in Medicaid approval often stem from ongoing communication with applicants.

The state’s Medicaid program has gone through major upheaval in the past year as states nationwide reviewed eligibility for everyone on the program. Montana officials dropped more than 115,300 people from coverage in that process, according to the state’s final report. Those disenrollments continued as nonprofits and patients alike cited problems in the state’s process, including delays in application processing and access to help for other safety net services.

Now, state lawmakers predict a major political fight during the legislative session over whether to continue to allow expanded Medicaid access to people who earn up to 138% of the federal poverty level, or about $43,000 a year for a family of four.

State Rep. Mike Yakawich, the Billings Republican behind the presumptive eligibility proposal, said he wants to keep some of its language vague. He’s leaving room for negotiations and potential amendments during the legislative session and beyond.

“The focus is to keep people at home, and it’s still going to be a hard lift to get it past the session,” Yakawich said. “We can add more to it two years from now.”

Not everyone on the interim committee was on board.

Sen. Daniel Emrich, a Republican from Great Falls, voted against the policy, saying it sounded too much like a gamble for families.

“We run the risk of taking and providing a service that’s then going to be pulled out from under them,” Emrich said.

The counterargument is that such cases would be rare. Burns, with KFF, said there is no reliable data nationally to show how often people are denied Medicaid after being presumed eligible. Presumptive access to Medicaid in-home programs is relatively new. And, from hospital data for other patients, it’s difficult to know whether a person was denied Medicaid because they didn’t qualify or because they didn’t complete the paperwork after leaving the hospital.

“There’s all these places where the ball could get dropped,” Burns said.

She said the difference with measures like Montana’s is that support services follow patients in their daily life, making it less likely patients would fall off the radar.

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Her husband, Bradley McGinnis, said she had told her doctor and nurses about her symptoms and even went to the emergency room when they worsened. But, Bradley said, what his wife was told in response was, “‘It’s summertime and you’re pregnant.’ That haunts me.”

Two days later, Sara had a massive stroke followed by a seizure. It happened on the way to the hospital, where she was headed again due to a splitting headache.

Sara, from Kalispell, Montana, never met her son, Owen, who survived through an emergency delivery and has her oval eyes and thick dark hair. She died the day after he was born.

Sara had eclampsia, a sometimes deadly pregnancy complication caused by persistent high blood pressure, also known as hypertension. High blood pressure makes the heart work in overdrive, which can damage organs.

Sara died in 2018. Today, more pregnant people are being diagnosed with dangerously high blood pressure, a finding that could save their lives. Recent studies show the rates of newly developed and chronic maternal high blood pressure have roughly doubled since 2007. Researchers say the jump in cases is likely due in part to more testing that discovers the conditions.

But that’s not the whole story. Data shows that the overall maternal mortality rate in the U.S. is also climbing, with high blood pressure one of the leading causes.

Medical experts are trying to stem the tide. In 2022, the American College of Obstetricians and Gynecologists lowered the threshold for when doctors should treat pregnant and postpartum patients for high blood pressure. And federal agencies offer training in best practices for screening and care. Federal data shows that maternal deaths from high blood pressure declined in Alaska and West Virginia after implementation of those guidelines. But applying those standards to everyday care takes time, and hospitals are still working to incorporate practices that might have saved Sara’s life.

In Montana, which last year became one of 35 states to implement the federal patient safety guidelines, more than two-thirds of hospitals provided patients with timely care, said Annie Glover, a senior research scientist with the Montana Perinatal Quality Collaborative. Starting in 2022, just over half of hospitals met that threshold.

“It just takes some time in a hospital to implement a change,” Glover said.

High blood pressure can damage a person’s eyes, lungs, kidneys, or heart, with consequences long after pregnancy. Preeclampsia — consistent high blood pressure in pregnancy — can also lead to a heart attack. The problem can develop from inherited or lifestyle factors: For example, being overweight predisposes people to high blood pressure. So does older age, and more people are having babies later in life.

Black and Indigenous people are far more likely to develop and die from high blood pressure in pregnancy than the general population.

“Pregnancy is a natural stress test,” said Natalie Cameron, a physician and an epidemiologist with Northwestern University’s Feinberg School of Medicine, who has studied the rise in high blood pressure diagnoses. “It’s unmasking this risk that was there all the time.”

But pregnant women who don’t fit the typical risk profile are also getting sick, and Cameron said more research is needed to understand why.

Mary Collins, 31, of Helena, Montana, developed high blood pressure while pregnant this year. Halfway through her pregnancy, Collins still hiked and attended strength training classes. Yet, she felt sluggish and was gaining weight too rapidly while her baby’s growth slowed drastically.

Collins said she was diagnosed with preeclampsia after she asked an obstetrician about her symptoms. Just before that, she said, the doctor had said all was going well as he checked her baby’s development.

“He pulled up my blood pressure readings, did a physical assessment, and just looked at me,” Collins said. “He was like, ‘Actually, I’ll take back what I said. I can easily guarantee that you’ll be diagnosed with preeclampsia during this pregnancy, and you should buy life flight insurance.’”

Indeed, Collins was airlifted to Missoula, Montana, for the delivery and her daughter, Rory, was born two months early. The baby had to spend 45 days in a neonatal intensive care unit. Both Rory, now about 3 months old, and Collins are still recovering.

The typical cure for preeclampsia is delivering the baby. Medication can help prevent seizures and speed up the baby’s growth to shorten pregnancy if the health of the mother or fetus warrants a premature delivery. In rare cases, preeclampsia can develop soon after delivery, a condition researchers still don’t fully understand.

Wanda Nicholson, chair of the U.S. Preventive Services Task Force, an independent panel of experts in disease prevention, said steady monitoring is needed during and after a pregnancy to truly protect patients. Blood pressure “can change in a matter of days, or in a 24-hour period,” Nicholson said.

And symptoms aren’t always clear-cut.

That was the case for Emma Trotter. Days after she had her first child in 2020 in San Francisco, she felt her heartbeat slow. Trotter said she called her doctor and a nurse helpline and both told her she could go to an emergency room if she was worried but advised her that it wasn’t needed. So she stayed home.

In 2022, about four days after she delivered her second child, her heart slowed again. That time, the care team in her new home of Missoula checked her vitals. Her blood pressure was so high the nurse thought the monitor was broken.

“‘You could have a stroke at any second,’” Trotter recalled her midwife telling her before sending her to the hospital.

Trotter was due to have her third child in September, and her doctors planned to send her and the new baby home with a blood pressure monitor.

Stephanie Leonard, an epidemiologist at Stanford University School of Medicine who studies high blood pressure in pregnancy, said more monitoring could help with complex maternal health problems.

“Blood pressure is one component that we could really have an impact on,” she said. “It’s measurable. It’s treatable.”

More monitoring has long been the goal. In 2015, the federal Health Resources and Services Administration worked with the American College of Obstetricians and Gynecologists to roll out best practices to make birth safer, including a specific guide to scan for and treat high blood pressure. Last year the federal government boosted funding for such efforts to expand implementation of those guides.

“So much of the disparity in this space is about women’s voices not being heard,” said Carole Johnson, head of the health resources agency.

The Montana Perinatal Quality Collaborative spent a year providing that high blood pressure training to hospitals across the state. In doing so, Melissa Wolf, the head of women’s services at Bozeman Health, said her hospital system learned that doctors’ use of its treatment plan for high blood pressure in pregnancy was “hit or miss.” Even how nurses checked pregnant patients’ blood pressure varied.

“We just assumed everyone knew how to take a blood pressure,” Wolf said.

Now, Bozeman Health is tracking treatment with the goal that any pregnant person with high blood pressure receives appropriate care within an hour. Posters dot the hospitals’ clinic walls and bathroom doors listing the warning signs for preeclampsia. Patients are discharged with a list of red flags to watch for.

Katlin Tonkin is one of the nurses training Montana medical providers on how to make birth safer. She knows how important it is from experience: In 2018, Tonkin was diagnosed with severe preeclampsia when she was 36 weeks pregnant, weeks after she had developed symptoms. Her emergency delivery came too late and her son Dawson, who hadn’t been getting enough oxygen, died soon after his birth.

Tonkin has since had two more sons, both born healthy, and she keeps photos of Dawson, taken during his short life, throughout her family’s home.

“I wish I knew then what I know now,” Tonkin said. “We have the current evidence-based practices. We just need to make sure that they’re in place.”

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Su esposo, Bradley McGinnis, dijo que ella le había informado a su doctor y enfermeras sobre sus síntomas e incluso había ido a la sala de emergencias cuando empeoraron. Pero, según Bradley, lo que le dijeron a su esposa fue: “‘Es verano y estás embarazada’. Eso me atormenta”.

Dos días después, Sara sufrió un derrame cerebral masivo seguido de una convulsión. Sucedió de camino al hospital, a donde iba nuevamente por un dolor de cabeza insoportable.

Sara, de Kalispell, Montana, nunca conoció a su hijo, Owen, quien sobrevivió gracias a una cesárea de emergencia y tiene sus mismos ojos ovalados y su espeso cabello oscuro. La mujer murió al día siguiente del nacimiento.

Sara tuvo eclampsia, una complicación del embarazo a veces mortal causada por presión arterial alta persistente, también conocida como hipertensión.

Sara murió en 2018. Hoy en día, más embarazadas reciben diagnósticos de presión arterial peligrosamente alta, un hallazgo que podría salvar vidas. Estudios recientes muestran que las tasas de nuevos casos y de hipertensión materna crónica casi se han duplicado desde 2007. Investigadores dicen que el aumento en los casos se debe en parte a más pruebas que detectan la afección.

Pero esa no es toda la historia. Los datos muestran que la tasa general de mortalidad materna en el país también está aumentando, siendo la hipertensión una de las principales causas.

Expertos médicos están tratando de frenar esta tendencia. En 2022, el Colegio Americano de Obstetras y Ginecólogos bajó el umbral sobre cuándo los médicos deben comenzar a tratar a pacientes embarazadas y en posparto por hipertensión.

Y las agencias federales ofrecen capacitación en mejores prácticas para la detección y atención. Los datos federales muestran que las muertes maternas por hipertensión disminuyeron en Alaska y West Virginia después de la implementación de esas pautas.

Pero aplicar esos estándares en la atención diaria lleva tiempo, y los hospitales aún están trabajando para incorporar prácticas que podrían haber salvado la vida de Sara.

En Montana, que el año pasado se convirtió en uno de los 35 estados en implementar las pautas federales de seguridad para pacientes, más de dos tercios de los hospitales brindaron atención oportuna a los pacientes, dijo Annie Glover, científica investigadora senior del Montana Perinatal Quality Collaborative. Desde 2022, poco más de la mitad de los hospitales alcanzaron ese umbral.

“Toma un tiempo implementar un cambio en un hospital”, dijo Glover.

La hipertensión puede dañar los ojos, pulmones, riñones o corazón de una persona, con consecuencias que duran mucho más allá del embarazo. La preeclampsia —hipertensión persistente en el embarazo— también puede causar un ataque cardíaco.

El problema puede desarrollarse por factores hereditarios o de estilo de vida: por ejemplo, tener sobrepeso predispone a las personas a la hipertensión. Lo mismo ocurre con la edad avanzada, y cada vez más personas tienen hijos en una etapa posterior de la vida.

Las personas negras e indígenas son mucho más propensas a desarrollar y morir por hipertensión en el embarazo que la población en general.

“El embarazo es una prueba de estrés natural”, dijo Natalie Cameron, médica y epidemióloga de la Escuela de Medicina Feinberg de la Universidad Northwestern, quien ha estudiado el aumento en los diagnósticos de hipertensión. “Está desenmascarando este riesgo que siempre estuvo presente”.

Pero las mujeres embarazadas que no encajan en el perfil de riesgo típico también se están enfermando, y Cameron dijo que se necesita más investigación para entender por qué.

Mary Collins, de 31 años, de Helena, Montana, desarrolló hipertensión durante su embarazo este año. A mitad de la gestación, Collins aún hacía senderismo y asistía a clases de entrenamiento de fuerza. Sin embargo, se sentía lenta y estaba ganando peso demasiado rápido mientras el crecimiento de su bebé disminuía drásticamente.

Collins dijo que le diagnosticaron preeclampsia después de preguntarle a un obstetra sobre sus síntomas. Justo antes de eso, dijo, el doctor había dicho que todo iba bien mientras revisaba el desarrollo de su bebé.

“Revisó mis lecturas de presión arterial, hizo una evaluación física y simplemente me miró”, dijo Collins. “Él dijo: ‘En realidad, me retracto de lo que dije. Puedo garantizar fácilmente que serás diagnosticada con preeclampsia durante este embarazo, y deberías comprar un seguro para bajar los costos de transporte de emergencia (life flight insurance)”.

Así fue. Collins fue trasladada por aire a Missoula, Montana, para el parto, y su hija, Rory, nació dos meses antes. El bebé tuvo que pasar 45 días en la unidad de cuidados intensivos neonatales. Tanto Rory, que ahora tiene unos 3 meses, como Collins, aún se están recuperando.

El tratamiento típico para la preeclampsia es el parto. Los medicamentos pueden ayudar a prevenir convulsiones y acelerar el crecimiento del bebé para acortar el tiempo del embarazo si la salud de la madre o el feto lo necesitan. En raros casos, la preeclampsia puede desarrollarse poco después del parto, una condición que los investigadores aún no comprenden completamente.

Wanda Nicholson, presidenta del Grupo de Trabajo de Servicios Preventivos de EE. UU., un panel independiente de expertos en prevención de enfermedades, dijo que se necesita un monitoreo constante durante y después del embarazo para proteger verdaderamente a los pacientes. La presión arterial “puede cambiar en cuestión de días, o en un período de 24 horas”, dijo Nicholson.

Y los síntomas no siempre son claros.

Ese fue el caso de Emma Trotter. Días después de tener a su primer hijo en 2020 en San Francisco, sintió que su ritmo cardíaco disminuía. Trotter dijo que llamó a su médico y a una línea de ayuda para enfermeras, y ambos le dijeron que podría ir a la sala de emergencias si estaba preocupada, pero le aconsejaron que no. Así que se quedó en casa.

En 2022, unos cuatro días después de dar a luz a su segundo hijo, su corazón volvió a latir despacio. Esta vez, el equipo médico en su nuevo hogar en Missoula revisó sus signos vitales. Su presión arterial era tan alta que la enfermera pensó que el monitor estaba roto.

“‘Podrías tener un derrame cerebral en un segundo’”, recordó Trotter que le dijo su partera antes de enviarla al hospital.

Trotter estaba por tener a su tercer hijo en septiembre, y sus médicos planearon enviarla a casa con el nuevo bebé con un monitor de presión arterial.

Stephanie Leonard, epidemióloga de la Escuela de Medicina de la Universidad de Stanford que estudia la hipertensión en el embarazo, dijo que más monitoreo podría ayudar con problemas complejos de salud materna.

“La presión arterial es un componente en el que realmente podríamos tener un impacto”, dijo. “Es medible. Es tratable”.

El monitoreo ha sido durante mucho tiempo el objetivo. En 2015, la Administración de Recursos y Servicios de Salud federal trabajó con el Colegio Americano de Obstetras y Ginecólogos para implementar las mejores prácticas para hacer que el parto sea más seguro, incluyendo una guía específica para detectar y tratar la hipertensión.

El año pasado, el gobierno federal aumentó el financiamiento para estos esfuerzos para expandir la implementación de las guías.

“Gran parte de la disparidad en este ámbito se debe a que no se escucha las voces de las mujeres”, dijo Carole Johnson, jefa de la agencia de recursos de salud.

El Montana Perinatal Quality Collaborative pasó un año proporcionando esa capacitación sobre hipertensión a los hospitales de todo el estado. Al hacerlo, Melissa Wolf, jefa de servicios para mujeres en Bozeman Health, dijo que su sistema hospitalario aprendió que el uso por parte de los médicos de su plan de tratamiento para la hipertensión en el embarazo era “inconsistente”.

Incluso la forma en que las enfermeras medían la presión arterial de las pacientes embarazadas variaba. “Simplemente asumimos que todos sabían cómo tomar la presión arterial”, dijo Wolf.

Ahora, Bozeman Health está monitoreando el tratamiento con el objetivo de que cualquier embarazada con hipertensión reciba atención adecuada en el plazo de una hora. Carteles decoran las paredes de las clínicas y las puertas de los baños de los hospitales, enumerando los signos de advertencia de la preeclampsia. Se da de alta a los pacientes con una lista de señales de alerta para que estén atentas.

Katlin Tonkin es una de las enfermeras que capacita a los proveedores médicos de Montana sobre cómo hacer que el parto sea más seguro. Sabe lo importante que es por experiencia: en 2018, cuando estaba de 36 semanas, a Tonkin la diagnosticaron con preeclampsia severa, semanas después de haber desarrollado síntomas. Su parto de emergencia llegó demasiado tarde y su hijo Dawson, quien no había estado recibiendo suficiente oxígeno, murió poco después del nacimiento.

Desde entonces, Tonkin ha tenido dos hijos más, ambos nacieron sanos, y mantiene fotos de Dawson, tomadas durante su corta vida.

“Ojalá hubiera sabido entonces lo que sé ahora”, dijo Tonkin. “Tenemos las prácticas actuales basadas en evidencia. Solo necesitamos asegurarnos de que estén en funcionamiento”.

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In theory, Native Americans are entitled to free health care when the Indian Health Service foots the bill at its facilities or sites managed by tribes. In reality, the agency is chronically underfunded and understaffed, leading to limited medical services and leaving vast swaths of the country without easy access to care.

Its Purchased/Referred Care program aims to fill gaps by paying outside providers for services patients might be unable to get through an agency-funded clinic or hospital, such as cancer treatment or pregnancy care. But resource shortages, complex rules, and administrative fumbles severely impede access to the referral program, according to patients, elected officials, and people who work with the agency.

The Indian Health Service, part of the Department of Health and Human Services, serves about 2.6 million Native Americans and Alaska Natives.

Native Americans qualify for the referred-care program if they live on tribal land — only 13% do — or within their nation’s “delivery area,” which usually includes surrounding counties. Those who live in another tribe’s delivery area are eligible in limited cases, while Native Americans who live beyond such borders are excluded.

Eligible patients aren’t guaranteed funding or timely help, however. Some of the Indian Health Service’s 170 service units exhaust their annual pool of money or reserve it for the most serious medical concerns.

Referred-care programs denied or deferred nearly $552 million in spending for about 120,000 requests from eligible patients in fiscal year 2022.

As a result, Native Americans might forgo care, increasing the risk of death or serious illness for people with preventable or treatable medical conditions.

The problem isn’t new. Federal watchdog agencies have reported concerns with the program for decades.

Connie Brushbreaker, a member of the Rosebud Sioux Tribe, has been denied or waitlisted for funding at least 14 times since 2018. She said it doesn’t make sense that the agency sometimes refuses to pay for treatment that will later be approved once a health problem becomes more serious and expensive.

“We try to do this preventative stuff before something gets to the point where you need surgery,” said Brushbreaker, who lives on her tribe’s reservation in South Dakota.

Many Native Americans say the U.S. government is violating its treaties with tribal nations, which often promised to provide for the health and welfare of tribes in return for their land.

“I keep having my elders here saying, ‘There’s treaty rights that say they’re supposed to be able to provide these services to us,’” said Lyle Rutherford, a council member for the Blackfeet Nation in northwestern Montana who said he also worked at the Indian Health Service for 11 years.

Native Americans have high rates of diseases compared with the general population, and a median age of death that’s 14 years younger than that of white people. Researchers who have studied the issue say many problems stem from colonization and government policies such as forcing Indigenous people into boarding schools and isolated reservations and making them give up healthy traditions, including bison hunting and religious ceremonies. They also cite an ongoing lack of health funding.

Congress budgeted nearly $7 billion for the Indian Health Service this year, of which roughly $1 billion is set aside for the referred-care program. A committee of tribal health and government leaders has long made funding recommendations that far exceed the agency’s budget. Its latest report says the Indian Health Service needs $63 billion to cover patients’ needs for fiscal year 2026, including $10 billion for referred care.

Brendan White, an agency spokesperson, said improving the referred-care program is a top goal of the Indian Health Service. He said about 83% of the health units it manages have been able to approve all eligible funding requests this year.

White said the agency recently improved how referred-care programs prioritize such requests and it is tackling staff shortages that can slow down the process. An estimated third of positions within the referred-care program were unfilled as of June, he said.

The Indian Health Service also recently expanded some delivery areas to include more people and is studying whether it can afford to create statewide eligibility in the Dakotas.

Jonni Kroll of the Little Shell Tribe of Chippewa Indians of Montana doesn’t qualify for the referred-care program because she lives in Deer Park, Washington, nearly 400 miles from her tribe’s headquarters.

She said tying eligibility to tribal lands echoes old government policies meant to keep Indigenous people in one place, even if it means less access to jobs, education, and health care.

Kroll, 58, said she sometimes worries about the medical costs of aging. Moving to qualify for the program is unrealistic.

“We have people that live all across the nation,” she said. “What do we do? Sell our homes, leave our families and our jobs?”

People applying for funding face a system so complicated that the Indian Health Service created flowcharts outlining the process.

Misty and Adam Heiden, of Mandan, North Dakota, experienced that firsthand. Their nearest Indian Health Service hospital no longer offers birthing services. So, late last year, Misty Heiden asked the referred-care program to pay for the delivery of their baby at an outside facility.

Heiden, 40, is a member of the Sisseton-Wahpeton Oyate, a South Dakota-based tribe, but lives within the Standing Rock Sioux Tribe’s delivery area. Native Americans who live in another tribe’s area, as she does, are eligible if they have close ties. Even though she is married to a Standing Rock tribal member, Heiden was deemed ineligible by hospital staff.

Now, the family has had to cut into its grocery budget to help pay off more than $1,000 in medical debt.

“It was kind of a slap in the face,” Adam Heiden said.

White, the Indian Health Service spokesperson, said many providers offer educational materials to help patients understand eligibility. But the Standing Rock rules, for example, aren’t fully explained in its brochure.

When patients are eligible, their needs are ranked using a medical priority list.

Connie Brushbreaker’s doctor at the Indian Health Service hospital in Rosebud, South Dakota, said she needed to see an orthopedic surgeon. But hospital staffers said the unit covers only patients at imminent risk of dying.

She said that, at one point, a worker at the referred-care program told her she could handle her pain, which was so intense she had to limit work duties and rely on her husband to put her hair in a ponytail.

“I feel like I am being tossed aside, like I do not matter,” Brushbreaker wrote in an appeal letter. “I am begging you to reconsider.”

The 55-year-old was eventually approved for funding and had surgery this July, two years after injuring her shoulder and four months after her referral.

Patients said they sometimes have trouble reaching referred-care departments due to staffing problems.

Patti Conica, a member of the Standing Rock Sioux Tribe, needed emergency care after developing a serious infection in June 2023. She said she applied for funding to cover the cost but has yet to receive a decision on her case despite repeated phone calls to referred-care staffers and in-person visits.

“I’ve been given the runaround,” said Conica, 58, who lives in Fort Yates, North Dakota, her tribe’s headquarters.

She now faces more than $1,500 in medical bills, some of which have been turned over to a collection agency.

Tyler Tordsen, a Republican state lawmaker and member of the Sisseton-Wahpeton Oyate in South Dakota, says the referred-care program needs more funding but officials could also do a “better job managing their finances.”

Some service units have large amounts of leftover funding. But it’s unclear how much of this money is unspent dollars versus earmarked for approved cases going through billing.

Meanwhile, more tribes are managing their health care facilities — an arrangement that still uses agency money — to try new ways to improve services.

Many also try to help patients receive outside care in other ways. That can include offering free transportation to appointments, arranging for specialists to visit reservations, or creating tribal health insurance programs.

For Brushbreaker, begging for funding “felt like I had to sell my soul to the IHS gods.”

“I’m just tired of fighting the system,” she said.

Have you had an experience navigating the Indian Health Service’s Purchased/Referred Care program that you’d like to share with KFF Health News for our reporting? Tell us here.

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The proposal comes some four years after a state audit found shortcomings in the health department’s oversight. The rules largely mirror federal requirements that national health policy analysts said have yet to lead to any meaningful enforcement.

“What is being proposed in Montana doesn’t really move the needle,” said Kevin Barnett, a researcher with the California-based nonprofit Public Health Institute who has studied hospital community benefits for decades. “It kicks the can down the road to say ‘we’ll consider this another day.’”

State officials would now be paying more attention, he said, but the impact depends on what they do with the information.

Montana’s plan is part of a national trend by states to try to cover federal enforcement gaps. The state would join at least 10 others that require nonprofit hospitals to create a broad community benefit plan and 25 states that mandate the facilities publicly share their financial assistance policies, according to The Hilltop Institute, a think tank at the University of Maryland-Baltimore County.

Policymakers have focused on nonprofit hospitals as a growing number of people in the U.S. struggle to afford medical care and, altogether, owe at least $220 billion in medical debt. The debt disproportionately affects people in poverty and Black people, according to data analyzed by KFF, a health information nonprofit that includes KFF Health News.

States with set giving standards take different approaches. In recent years, California adopted new reporting requirements for hospitals to show how they serve vulnerable populations. Oregon created new rules for when and how hospitals must provide patients discounted care. And five states — Illinois, Nevada, Pennsylvania, Texas, and Utah — have set minimums that hospitals must spend toward community benefits.

Just over half of the hospitals in the U.S. are nonprofits. While each must report the “community benefits” they provide, federal law doesn’t specify which services qualify or how much to give. Inconsistent hospital reports make it difficult to distinguish between low and high givers.

Montana’s 2020 state audit found that hospitals report benefits vaguely and inconsistently. The following year, a KFF Health News investigation found that, even by hospitals’ own reports, some of Montana’s richest facilities fell behind the national average in community benefit spending.

A Montana law passed in 2023 requires the state health department to track hospitals’ giving and to define standards. The department’s proposed rules spell out some requirements, such as calling on hospitals to post financial assistance policies prominently online. But mostly, the list of requirements sets the stage for more to come.

Holly Matkin, a health department spokesperson, said the agency will establish standards that are “fair to all nonprofit hospitals.” The state plans to collect data over a three-year period to begin establishing standards in 2026.

The state’s proposed rules have some differences from federal requirements, such as mandating hospital-level reports as opposed to systemwide information that covers numerous hospital locations. They also leave room for the state to seek more details about how hospitals provide care at reduced prices, such as the number of people who receive financial aid or the average amount given per person.

But the Montana Hospital Association lobbied legislators against including too many reporting rules, arguing it would increase hospitals’ administrative burden. State lawmakers then narrowed the data the state can collect to largely the information hospitals already provide to the federal government. The association supports the state’s rules as proposed but has said any state standards need flexibility.

“The truth is that most communities have more health needs than they can effectively address,” said Bob Olsen, president and CEO of the Montana Hospital Association. “Models that apply a one-size-fits-all standard on communities take decision-making out of local communities, and have the potential to do more harm than good.”

Adam Zarrin, director of state government affairs with the Leukemia & Lymphoma Society, supported Montana’s proposal during a June 18 public hearing. But he testified that Montana could do more, such as mandating screening for financial assistance and requiring that hospitals provide it to patients at particular income levels.

“These rules could go even further to provide greater access and protections for Montanans who need and apply for financial assistance,” Zarrin said.

Health department officials said they plan to create numerical or narrative standards for judging how hospitals say they’ve responded to people’s needs — or a combination of the two. Officials are still vague on what either standard could entail. But they have said the benchmarks would be set each year based on each hospital’s size and patient revenue. Hospitals with operating losses wouldn’t have to meet the forthcoming rules.

Ge Bai, a health policy professor at Johns Hopkins University who has long studied hospitals’ community benefits, said such standards come with trade-offs. For example, standards that can be met through words rather than numbers might allow large hospitals to pay consultants to window-dress the story of their benefits while smaller systems struggle to show their worth. She said numerical rules, such as spending minimums, could cause some hospitals to slow efforts once they meet the state’s requirement.

“It’s not perfect,” Bai said. “But If we don’t do anything, well, that’s the status quo.”

In 2020, Oregon set minimums for the free or discounted care hospitals must provide, but even with those rules, the state’s overall charity care spending didn’t increase, Bai said. Last summer, lawmakers there added a new set of rules, including that hospitals must screen patients with large hospital bills to see if they qualify for financial assistance.

California also has implemented a combination of standards. In recent years, the state expanded reporting requirements, mandating that nonprofit hospitals explain the math behind their community benefits tally and detail how they’re serving vulnerable populations such as people who are homeless. The state also mandated that hospitals offer discounted care to uninsured patients or some people with costly medical bills.

Even in states like California, it can be hard to see how those policies affect patients who struggle to access care, said Barnett of the Public Health Institute. He said he’d like to see states require hospitals to reduce health disparities with specific outcomes, such as lowering preventable emergency room visits by people from especially poor neighborhoods.

In 2025, California will start requiring hospitals to submit annual reports that include an analysis of access to care and a plan to address disparities. The state is still defining those reporting rules.

Whatever standard states employ, health policy researchers said promoting transparency is key, such as by standardizing reporting rules to provide a clear picture across systems. Bai said Montana’s rules are a good first step.

Matkin, from the state health department, said whatever giving benchmarks Montana sets won’t be a copy-and-paste of what others have tried. The department plans to create standards unique to Montana.

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Billings-based RiverStone Health is eliminating 42 jobs this spring, cutting nearly 10% of its workforce. The cuts have shuttered an inpatient hospice facility, will close a center for patients managing high blood pressure, and removed a nurse who worked within rural schools. It also reduced the size of the clinic’s behavioral health care team and the number of staffers focused on serving people without housing.

RiverStone Health CEO Jon Forte said clinic staffers had anticipated a shortfall as the cost of business climbed in recent years. But a $3.2 million loss in revenue, which he largely attributed to Montana officials disenrolling a high number of patients from Medicaid, pushed RiverStone’s deficit much further into the red than anticipated.

“That has just put us in a hole that we could not overcome,” Forte said.

RiverStone is one of nearly 1,400 federally funded clinics in the U.S. that adjust their fees based on what individuals can pay. They’re designed to reach people who face disproportionate barriers to care. Some are in rural communities, where offering primary care can come at a financial loss. Others concentrate on vulnerable populations falling through cracks in urban hubs. Altogether, these clinics serve more than 30 million people.

The health centers’ lifeblood is revenue received from Medicaid, the state-federal subsidized health coverage for people with low incomes or disabilities. Because they serve a higher proportion of low-income people, the federally funded centers tend to have a larger share of patients on the program and rely on those reimbursements.

But Medicaid enrollment is undergoing a seismic shift as states reevaluate who is eligible for it, a process known as the Medicaid “unwinding.” It follows a two-year freeze on disenrollments that protected people’s access to care during the covid public health emergency.

As of May 23, more than 22 million people had lost coverage, including about 134,000 in Montana — 12% of the state’s population. Some no longer met income eligibility requirements, but the vast majority were booted because of paperwork problems, such as people missing the deadline, state documents going to outdated addresses, or system errors.

That means health centers increasingly offer care without pay. Some have seen patient volumes drop, which also means less money. When providers like RiverStone cut services, vulnerable patients have fewer care options.

Jon Ebelt, communications director of the Montana Department of Public Health and Human Services, said the agency isn’t responsible for individual organizations’ business decisions. He said the state is focused on maintaining safety-net systems while protecting Medicaid from being misused.

Nationwide, health centers face a similar problem: a perfect financial storm created by a sharp rise in the cost of care, a tight workforce, and now fewer insured patients. In recent months, clinics in California and Colorado have also announced cuts.

“It’s happening in all corners of the country,” said Amanda Pears Kelly, CEO of Advocates for Community Health, a national advocacy group representing federally qualified health centers.

Nearly a quarter of community health center patients who rely on Medicaid were cut from the program, according to a joint survey from George Washington University and the National Association of Community Health Centers. On average, each center lost about $600,000.

One in 10 centers either reduced staff or services, or limited appointments.

“Health centers across the board try to make sure that the patients know they’re still there,” said Joe Dunn, senior vice president for public policy and advocacy at the National Association of Community Health Centers.

Most centers operate on shoestring budgets, and some started reporting losses as the workforce tightened and the cost of business spiked.

Meanwhile, federal assistance — money designed to cover the cost of people who can’t afford care —remained largely flat. Congress increased those funds in March to roughly $7 billion over 15 months, though health center advocates said that still doesn’t cover the tab.

Until recently, RiverStone in Montana had been financially stable. Before the pandemic, the organization was making money, according to financial audits.

In summer 2019, a $10 million expansion was starting to pay off. RiverStone was serving more patients through its clinic and pharmacy, a revenue increase that more than offset increases in operating costs, according to documents.

But in 2021, at the height of the pandemic, those growing expenses — staff pay, building upkeep, the price of medicine, and medical gear — outpaced the cash coming in. By last summer, the company had an operational loss of about $1.7 million. With the Medicaid redetermination underway, RiverStone’s pool of covered patients shrank, eroding its financial buffer.

Forte said the health center plans to ask state officials to increase its Medicaid reimbursement rates, saying existing rates don’t cover the continuum of care. That’s a tricky request after the state raised its rates slightly last year following much debate around which services needed more money.

Some health center cuts represent a return to pre-pandemic staffing, after temporary federal pandemic funding dried up. But others are rolling back long-standing programs as budgets went from stretched to operating in the red.

California’s Petaluma Health Center in March laid off 32 people hired during the pandemic, The Press Democrat reported, or about 5% of its workforce. It’s one of the largest primary care providers in Sonoma County, where life expectancy varies based on where people live and poverty is more prevalent in largely Hispanic neighborhoods.

Clinica Family Health, which has clinics throughout Colorado’s Front Range, laid off 46 people, or about 8% of its staff, in October. It has consolidated its dental program from three clinics to two, closed a walk-in clinic meant to help people avoid the emergency room, and ended a home-visit program for patients recently discharged from the hospital.

Clinica said 37% of its patients on Medicaid before the unwinding began lost their coverage and are now on Clinica’s discount program. This means the clinic now receives between $5 and $25 for medical visits that used to bring in $220-$230.

“If it’s a game of musical chairs, we’re the ones with the last chair. And if we have to pull it away, then people hit the ground,” said CEO Simon Smith.

Stephanie Brooks, policy director of the Colorado Community Health Network, which represents Colorado health centers, said some centers are considering consolidating or closing clinics.

Colorado and Montana have among the nation’s highest percentages of enrollment declines. Officials in both states have defended their Medicaid redetermination process, saying most people dropped from coverage likely no longer qualify, and they point to low unemployment rates as a factor.

In many states, health providers and patients alike have provided examples in which people cut from coverage still qualified and had to spend months entangled in system issues to regain access.

Forte, with RiverStone, said reducing services on the heels of a pandemic adds insult to injury, both for health care workers who stayed in hard jobs and for patients who lost trust that they’ll be able to access care.

“This is so counterproductive and counterintuitive to what we’re trying to do to meet the health care needs of our community,” Forte said.

KFF Health News correspondent Rae Ellen Bichell in Longmont, Colorado, contributed to this report.

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Residential treatment facilities are usually nondescript homes tucked into neighborhoods. The state’s lowest-intensity homes can provide people with alcohol and drug addiction leaving inpatient care a bridge to independent living. They’re the final option of four tiers of clinical housing and aim to offer residents stability amid daily stressors.

But these particular houses have been disappearing — down to 10 sites today from 14 in 2022. That was the year the state started paying providers a blanket rate for their services through Medicaid, the state-federal program for people with low incomes and disabilities. At the same time, the state increased the homes’ staffing requirements.

State health department officials lauded the 2022 change as an expansion in access to care, saying it increased the houses’ pay and matched the cost to operate. But providers warned at the time that it could backfire because the rates weren’t high enough to cover the new staffing rules.

Terri Russell, who runs John “Scott” Hannon House, a treatment home in Helena, said it has been hard to break even since, and she’s watched other sites close under financial pressure.

“It’s the hardest thing in the world to watch a person leave treatment and go back down to the homeless shelter, or go on the street,” Russell said.

The new voucher program could help fill in some of the gap, Russell said. Approved by the state in April, it pays low-intensity treatment residences to house uninsured people as they sign up for Medicaid or other health coverage. The idea is to reduce barriers to care for vulnerable patients at a key point in their recovery. But the money is capped at $35 a day, with a $1,000 limit per resident a year.

“It’s like it was somebody’s idea for a band-aid,” said Demetrius Fassas, who runs Butte Spirit Homes, which has two eight-bed facilities.

He said the payments fall well below the cost of providing care. And, because of the vouchers’ cap, the aid could run out weeks before someone knows whether they qualify for Medicaid coverage.

Low-intensity programs vary in how long patients stay; it could be a few months or more than a year. Fassas said when things go as intended, clients find stable jobs. That success can lead to residents earning too much money to qualify for Medicaid but not enough to afford the full cost of care.

Providers have said funding issues are widespread for substance use disorder programs but that shortfalls especially hit these low-intensity homes. The tension in Montana mirrors challenges elsewhere around how to fund transitional treatment so that patients don’t fall off a cliff in their recovery because care is unavailable.

As of 2022, at least 33 states were using money from Medicaid to help run residential treatment programs, KFF found. Federal rules prohibit Medicaid dollars from going to room and board at transitional homes, though states can chip in their own money. In North Dakota, for example, lawmakers set aside state funds for a voucher program that addresses treatment barriers, which include the cost of room and board.

Montana once was among the states that let providers seek help covering room and board costs for its poorer residents. The money came from federal grants the state manages for addiction treatment and prevention.

But those room and board grants stopped when Montana’s health department shifted to higher, bundled Medicaid rates in 2022. According to a state report last year, reducing the block grants to the low-intensity homes allowed officials to put that money toward other “prevention priorities.”

The new rules the state added at the same time brought the residential facilities up to American Society of Addiction Medicine standards. That included having on-site clinical services, a clinical director for each home, and an employee working anytime a resident was in the home, including night shifts.

Fassas, of Butte Spirit Homes, called the rules bittersweet. They increased the quality of care. But, Fassas said, he had to hire six additional workers to comply with the rules and the company now runs at a loss if he doesn’t find additional grants.

Jon Ebelt, a spokesperson with the Montana Department of Public Health and Human Services, said the new rates, $143 a day per Medicaid resident, were developed by a state-paid contractor as part of Montana’s effort to match the cost of care.

Ebelt said administrative costs were factored into the state’s Medicaid rate, and that traditional room and board expenses typically fall into that category.

Low-intensity homes’ rates haven’t increased since they went into place in 2022.

Malcolm Horn, chief behavioral health officer for the Rimrock Foundation, said the facilities need more help in covering expenses like the mortgage, repairs to the home, or feeding residents.

The Rimrock Foundation, which is based in Billings, is one of Montana’s largest mental health providers. Horn said after the new rules were implemented, Rimrock converted one of its two low-intensity homes for women with children into high-intensity housing, which pays more. The switch displaced families in the low-intensity program.

“We couldn’t actually sustain having both those houses,” Horn said.

Montana officials set aside $300,000 for the voucher program and estimated that money would help cover initial housing for 329 people in 2024.

Terri Todd, who runs the nonprofit Gratitude in Action in Billings for people in recovery, advocated for the program during the 2023 legislative session. She said the goal had been to follow North Dakota’s model to help cover addiction care for people facing barriers. But Montana lawmakers scaled that back, which Todd attributed to concerns about cost.

Todd said that while what survived the legislature is less than what she had hoped for, the voucher program is still a start in addressing barriers to care.

State Rep. Mike Yakawich, the Republican who proposed the program, said it was initially so broad, he learned, it overlapped with some existing efforts. But he said state staffers told him the low-intensity group homes’ room and board costs were an area that could use more funding.

Yakawich said securing any money felt like a win in a funding tug-of-war. More help to stabilize the state’s mental health system is coming.

Money for the vouchers is coming out of Republican Gov. Greg Gianforte’s HEART Fund initiative, which is due to invest about $25 million a year toward behavioral health programs. Separately, state officials recently announced that they’re creating grants to increase Montana’s bed capacity across residential facilities, including for substance use treatment providers. That money could go toward reopening closed facilities.

But Yakawich said even that infusion of money won’t provide enough to go around.

“Everybody wants a chunk of the pie, and not everyone’s going to get it,” he said.

The voucher program is scheduled to expire in three years, Yakawich said. By then, he said, maybe he can persuade lawmakers to renew the program — with more money.

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Living in Las Vegas and then 50, he finally felt safe enough to come out as a transgender man. He had his wife’s support and a doctor’s letter showing he had a long history of gender dysphoria, the psychological distress felt when one’s sex assigned at birth and gender identity don’t match.

Although in-network providers were available, Smith-Collins selected Florida-based surgeon Charles Garramone, who markets himself as an early developer of female-to-male top surgery and says that he does not contract with insurance. Smith-Collins said he was willing to pay more to go out-of-network.

“I had one shot to get the chest that I should have been born with, and I wasn’t going to chance it to someone who was not an expert at his craft,” he said.

Smith-Collins arranged to spend a week in Florida and contacted friends there who could help him recover from the outpatient procedure, he said.

Garramone’s practice required that the patient agree to its financial policies, according to documents shared by Smith-Collins. One document stated that “full payment” of Garramone’s surgical fees is required four weeks in advance of surgery and that all payments to the practice are “non-refundable.”

Smith-Collins said he and his wife dipped into their retirement savings to cover the approximately $14,000 upfront. With prior authorization from his insurer in hand saying the procedure would be “covered,” he thought his insurance would reimburse anything he paid beyond his out-of-pocket maximum for out-of-network care: $6,900.

The day before surgery, Smith-Collins signed another agreement from the surgeon’s practice, outlining how it would file an out-of-network claim with his insurance. Any insurance payment would be received by the doctor, it said.

The procedure went well. Smith-Collins went home happy and relieved.

Then the bill came. Or in this case: The reimbursement didn’t.

The Patient: Cass Smith-Collins, now 52, who has employer-based coverage through UnitedHealthcare.

Medical Services: Double-incision top surgery with nipple grafts, plus lab work.

Service Provider: Aesthetic Plastic Surgery Institute, doing business as The Garramone Center, which is owned by Garramone, according to Florida public records.

Total Bill: The surgeon’s practice billed the patient and insurance a total of $120,987 for his work. It charged the patient about $14,000 upfront — which included $300 for lab work and a $1,000 reservation fee — and then billed the patient’s insurer an additional $106,687.

The surgeon later wrote the patient that the upfront fee was for the “cosmetic” portion of the surgery, while the insurance charge was for the “reconstructive” part. Initially, the insurer paid $2,193.54 toward the surgeon’s claim, and the patient received no reimbursement.

After KFF Health News began reporting this story, the insurer reprocessed the surgeon’s claim and increased its payment to the practice to $97,738.46. Smith-Collins then received a reimbursement from Garramone of $7,245.

What Gives: Many patients write to Bill of the Month each year with their own tangled billing question. In many cases — including this one — the short answer is that the patient misunderstood their insurance coverage.

Smith-Collins was in a confusing situation. UnitedHealthcare said his out-of-network surgery would be “covered,” then it later told Smith-Collins it didn’t owe the reimbursement he had counted on. Then, after KFF Health News began reporting, he received a reimbursement.

Adding to the confusion were the practice’s financial polices, which set a pre-surgery payment deadline, gave the doctor control of any insurance payment, and left the patient vulnerable to more bills (though, fortunately, he received none).

Agreeing to an out-of-network provider’s own financial policy — which generally protects its ability to get paid and may be littered with confusing insurance and legal jargon — can create a binding contract that leaves a patient owing. In short, it can put the doctor in the driver’s seat, steering the money.

The agreement Smith-Collins signed the day before surgery says that the patient understands he is receiving out-of-network care and “may be responsible for additional costs for all services provided” by the out-of-network practice.

Federal billing protections shield patients from big, out-of-network bills — but not in cases in which the patient knowingly chose out-of-network care. Smith-Collins could have been on the hook for the difference between what his out-of-network doctor and insurer said the procedure should cost: nearly $102,000.

Emails show Smith-Collins had a couple of weeks to review a version of the practice’s out-of-network agreement before he signed it. But he said he likely hadn’t read the entire document because he was focused on his surgery and willing to agree to just about anything to get it.

“Surgery is an emotional experience for anyone, and that’s not an ideal time for anyone to sign a complex legal agreement,” said Marianne Udow-Phillips, a health policy instructor at the University of Michigan School of Public Health.

Udow-Phillips, who reviewed the agreement, said it includes complicated terms that could confuse consumers.

Another provision in the agreement says the surgeon’s upfront charges are “a separate fee that is not related to charges made to your insurance.”

Months after his procedure, having received no reimbursement, Smith-Collins contacted his surgeon, he said. Garramone replied to him in an email, explaining that UnitedHealthcare had paid for the “reconstructive aspect of the surgery” — while the thousands of dollars Smith-Collins paid upfront was for the “cosmetic portion.”

Filing an insurance claim had initially led to a payment for Garramone, but no refund for Smith-Collins.

Garramone did not respond to questions from KFF Health News for this article or to repeated requests for an interview.

Smith-Collins had miscalculated how much his insurance would pay for an out-of-network surgeon.

Documents show that before the procedure Smith-Collins received a receipt from Garramone’s practice marked “final payment” with a zero balance due, as well as prior authorization from UnitedHealthcare stating that the surgery performed by Garramone would be “covered.”

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But out-of-network providers aren’t limited in what they can charge, and insurers don’t have a minimum they must pay.

An explanation of benefits, or EOB, statement shows Garramone submitted a claim to UnitedHealthcare for more than $106,000. Of that, UnitedHealthcare determined the maximum it would pay — known as the “allowed amount” — was about $4,400. A UnitedHealthcare representative later told Smith-Collins in an email that the total was based on what Medicare would have paid for the procedure.

Smith-Collins’ upfront charges of roughly $14,000 went well beyond the price the insurer deemed fair, and UnitedHealthcare wasn’t going to pay the difference. By UnitedHealthcare’s math, Smith-Collins’ share of its allowed amount was about $2,200, which is what counted toward his out-of-pocket costs. That meant, in the insurer’s eyes, Smith-Collins still hadn’t reached his $6,900 maximum for the year, so no refund.

Neither UnitedHealthcare nor the surgeon provided KFF Health News with billing codes, making it difficult to compare the surgeon’s charges to cost estimates for the procedure.

Garramone’s website says his fee varies depending on the size and difficulty of the procedure. The site says his prices reflect his experience and adds that “cheaper” may lead to “very poor results.”

Though he spent more than he expected, Smith-Collins said he’ll never regret the procedure. He said he had lived with thoughts of suicide since youth, having realized at a young age that his body didn’t match his identity and feared others would target him for being trans.

“It was a lifesaving thing,” he said. “I jumped through whatever hoops they wanted me to go through so I could get that surgery, so that I could finally be who I was.”

The Resolution: Smith-Collins submitted two appeals with his insurer, asking UnitedHealthcare to reimburse him for what he spent beyond his out-of-pocket maximum. The insurer denied both appeals, finding its payments were correct based on the terms of his plan, and said his case was not eligible for a third, outside review.

But after being contacted by KFF Health News, UnitedHealthcare reprocessed Garramone’s roughly $106,000 claim and increased its payment to the practice to $97,738.46.

Maria Gordon Shydlo, a UnitedHealthcare spokesperson, told KFF Health News the company’s initial determination was correct, but that it had reprocessed the claim so that Smith-Collins is “only” responsible for his patient share: $6,755.

“We are disappointed that this non-contracted provider elected to charge the member so much,” she said.

After that new payment, Garramone gave Smith-Collins a $7,245 refund in mid-April.

The Takeaway: Udow-Phillips, who worked in health insurance for decades and led provider services for Blue Cross Blue Shield of Michigan, said she had never seen a provider agreement like the one Smith-Collins signed.

Patients should consult a lawyer before signing any out-of-network agreements, she said, and they should make sure they understand prior authorization letters from insurers.

The prior authorization Smith-Collins received “doesn’t say covered in full, and it doesn’t say covered at what rate,” Udow-Phillips said, adding later, “I am sure [Smith-Collins] thought the prior authorization was for the cost of the procedure.”

Patients can seek in-network care to feel more secure about what insurance will cover and what their doctors might charge.

But for those who have a specific out-of-network doctor in mind, there are ways to try to avoid sticker shock, said Sabrina Corlette, a research professor and co-director of the Center on Health Insurance Reforms at Georgetown University:

• Patients should always ask insurers to define what “covered” means, specifically whether that means payment in full and for what expenses. And before making an upfront payment, patients should ask their insurer how much of that total it would reimburse.
• Patients also can ask their provider to agree in advance to accept any insurance reimbursement as payment in full, though there’s no requirement that they do so.
• And patients can try asking their insurer to provide an exact dollar estimate for their out-of-pocket costs and ask if they are refundable should insurance pick up the tab.

Bill of the Month is a crowdsourced investigation by KFF Health News and NPR that dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!

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Jason George began noticing in September that Medicaid payments had stalled for some of his assisted living facility residents, people who need help with daily living.

Guardian Group Montana, which owns three small facilities in rural Montana, relies on the government health insurance to cover its care of low-income residents. George, who manages the facilities, said residents’ Medicaid delays have lasted from a few weeks to more than six months and that at one point the total amounted to roughly $150,000.

George said the company didn’t have enough money to pay its employees. When he called state health and public assistance officials for help, he said, they told him they were swamped processing a high load of Medicaid cases, and that his residents would have to wait their turn.

“I’ve mentioned to some of them, ‘Well what do we do if we’re not being paid for four or five months? Do we have to evict the resident?’” he asked.

Instead, the company took out bank loans at 8% interest, George said.

Montana officials finished their initial checks of who qualifies for Medicaid in January, less than a year after the federal government lifted a freeze on disenrollments during the height of the covid-19 pandemic. More than 127,200 people in Montana lost Medicaid with tens of thousands of cases still processing, according to the latest state data, from mid-February.

Providers who take Medicaid have said their state payments have been disrupted, leaving them financially struggling amid the unwinding. They’re providing care without pay, and sometimes going into debt. It’s affecting small long-term care facilities, substance use disorder clinics, and federally funded health centers that rely on Medicaid to offer treatment based on need, not what people can pay.

State health officials have defended their Medicaid redetermination process and said they have worked to address public assistance backlogs.

Financial pinches were expected as people who legitimately no longer qualify were removed from coverage. But the businesses have said an overburdened state workforce is creating a different set of problems. In some cases, it has taken months for people to reapply for Medicaid after getting dropped, or to access the coverage for the first time. Part of the problem, providers said, are long waits on hold for the state’s call center and limited in-person help.

The problem is ongoing: George said two Guardian residents were booted from Medicaid in mid-March, with the state citing a lack of information as the cause.

“I have proof we submitted the needed information weeks ago,” he said.

Providers said they’ve also experienced cases of inconsistent Medicaid payments for people who haven’t lost coverage. It can be hard to disentangle why payments suddenly stop. Patients and providers are working within the same overstretched system.

Jon Forte is the head of the Yellowstone County health department in Billings, which runs health centers that provide care regardless of patients’ ability to pay. He said that at one point some of the clinics’ routine Medicaid claims went unpaid for up to six months. Their doctors are struggling to refer patients out for specialty care as some providers scale back on clientele, he said.

“Some have honestly had to stop seeing Medicaid patients so that they can meet their needs and keep the lights on,” Forte said. “It is just adding to the access crisis we have in the state.”

Payment shortfalls especially hurt clinics that base fees on patient income.

David Mark, a doctor and the CEO of One Health, which has rural clinics dotted across eastern Montana and Wyoming, said the company anticipated making about $500,000 in profit through its budget year so far. Instead, it’s $1.5 million in the red.

In Yellowstone County, Forte said, the health department, known as RiverStone Health, is down $2.2 million from its anticipated Medicaid revenue. Forte said that while state officials have nearly caught up on RiverStone Health’s direct Medicaid payments, smaller providers are still seeing delays, which contributes to problems referring patients for care.

Jon Ebelt, a spokesperson for the Montana Department of Public Health and Human Services, said Medicaid can retroactively pay for services for people who have lost coverage but are then found eligible within 90 days. He said the state’s average redetermination processing time is 34 days, the average processing time for applications is 48 days, and, when processing times are longer, it’s often due to ongoing communication with a client.

Ebelt didn’t acknowledge broader Medicaid payment delays, but instead said a provider may be submitting claims for Medicaid enrollees who aren’t eligible. He rejected the idea that individual examples of disruptions amount to a systemic problem.

“We would caution you against using broad brush strokes to paint a picture of our overall eligibility system and processes based on a handful of anecdotal stories,” Ebelt said in an emailed response to a KFF Health News query.

Ebelt didn’t directly answer questions about continued long waits for people seeking help but instead said continued coverage depends on individual beneficiaries submitting information on time.

Federal data shows Montana’s average call center wait time is 30 minutes — putting it among states with the highest average wait times. Mike White, co-owner of Caslen Living Centers, which has six small assisted living facilities across central and southwestern Montana, said some family members allowed the company to manage residents’ Medicaid accounts to help avoid missing deadlines or paperwork. Even so, he said, the company is waiting for about $30,000 in Medicaid payments, and it’s hard to reach the state when problems arise.

When they do get through to the state’s call center, the person on the other end can’t always resolve their issue or will answer questions for only one case at a time.

“You don’t know how long it’s going to take — it could be two months, it could be six months — and there’s nobody to talk to,” White said.

Ebelt said long-term care facilities were provided information on how to prepare for the unwinding process. He said new Medicaid cases for long-term care facilities are complicated and can take time.

Stan Klaumann lives in Ennis and has power of attorney for his 94-year-old mom, who resides in one of Guardian’s assisted living homes. Klaumann said that while she never lost coverage, the state didn’t make Medicaid payments toward her long-term care for more than four months and he still doesn’t know why.

He said that since last fall the state hasn’t consistently mailed him routine paperwork he needs to fill out and return in exchange for Medicaid payments to continue. He tried the state’s call center, he said, but each time he waited on hold for more than two hours. He made four two-hour round trips to his closest office of public assistance to try to get answers.

Sometimes the workers told him that there was a state error, he said, and other times that he was missing paperwork he’d already submitted, such as where money from selling his mom’s car went.

“Each time I went, they gave me a different answer as to why my mother’s bills weren’t being paid,” Klaumann said.

Across the nation, people have reported system errors and outdated contact information that led states to drop people who qualify. At least 28 states paused procedural disenrollments to boost outreach to people who qualify, according to federal data. Montana stuck to its original time frame and has a higher procedural disenrollment rate than most other states, according to KFF.

Stephen Ferguson, executive director of Crosswinds Recovery in Missoula, said the substance use disorder program doesn’t have a full-time person focused on billing and sometimes doesn’t realize clients lost Medicaid coverage until the state rejects thousands of dollars in services that Crosswinds submits for reimbursement. After that, it can take months for clients to either get reenrolled or learn they truly no longer qualify.

Ferguson said he’s writing grant proposals to continue to treat people despite their inability to pay.

“We’re riding by the seat of our pants right now,” he said. “We are unsure what next month or the next quarter looks like.”

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

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Too often, health care workers wait to seek counseling or addiction treatment, causing their work and patient care to suffer, said Jean Branscum, CEO of the Montana Medical Association, an industry group representing doctors.

“They’ve invested so much time in their career,” Branscum said. “To have anything jeopardize that is a big worry on their mind.”

Montana, like other states, has a recovery program for health professionals who have a substance use disorder or mental illness. However, medical associations say such programs often come with invasive monitoring, even for voluntary care. And gray areas about when a mental illness should become public breeds fear that seeking care jeopardizes a medical career.

Montana is among the states looking to boost confidential care for health professionals as long as they’re not deemed a danger to themselves or patients. In recent years, at least a dozen states have considered or created confidential wellness programs to offer clinicians help early on for career burnout or mental health issues. States have also reworked medical licensing questions to avoid scrutiny for providers who need mental health treatment. The changes are modeled after Virginia legislation from 2020.

During a legislative committee meeting last month, advocates for Montana medical professionals asked state lawmakers to follow Virginia’s lead. They say the goal is twofold: to get clinicians treatment before patients are at risk and to curtail the workforce burnout that’s partly fueled by untreated stress.

Montana’s existing medical monitoring program, the Montana Recovery Program, is run by the global company Maximus. Montana’s professional advocates had backed another nonprofit to run Montana’s program, which didn’t win the state contract.

The Montana Recovery Program declined a request for an interview, instead referring KFF Health News to the Montana Department of Labor & Industry, which oversees the state’s medical licensing boards. Department staffers didn’t comment by deadline.

In a Medscape survey released this year, 20% of physicians said they felt depressed, with job burnout as a leading factor. The majority said confiding in other doctors wasn’t practical. Some said they might not tell anyone about their depression out of fear people would doubt their abilities, or that their employer or medical board could find out.

Health professionals are leaving their jobs. They’re retiring early, reducing work hours, or switching careers. That further dwindles patients’ care options when there already aren’t enough providers to go around. The federal government estimates 74 million people live in an area without enough primary care services due to a workforce shortage.

Aiming to ensure patient safety, state medical boards can suspend or revoke clinicians’ rights to practice medicine if substance use or psychological disorders impair their work. Those cases are rare. One study found roughly 4,400 actions against the licenses of U.S. physicians for either substance use or psychological impairment from 2004 to 2020.

Nonetheless, workforce advocates say disclosure requirements cause some health professionals to dodge questions about mental health histories on licensing and insurance forms or forgo care altogether. They’re worried divulging any weakness will signal they shouldn’t practice medicine.

The mental health questions health workers are asked vary by state and profession. For example, nurses in Montana renewing their license are asked if they have any psychological condition or substance use that limited their ability to practice “with reasonable skill and safety” in the previous six months. Along with being asked about substance use on the job, doctors are required to say whether they’ve experienced a mental condition that “might adversely affect any aspect of your ability to perform.”

“When I see that question on my renewal, do I have to report that I was depressed because I was going through a really tough divorce?” Branscum cited as an example of workers’ uncertainty. “You know, my life is turned upside down now. Am I obligated to report that?”

A “yes” wouldn’t immediately result in licensing problems. Those who do report mental health troubles would be flagged by state workers as a potential concern. They could end up before the board’s same screening panel that recommends whether to revoke a license, or be referred to long-term monitoring with regular screening.

Additionally, health professionals are required to report when other clinicians show unprofessionalism or have potential issues that affect performance. Branscum said medical professionals worry that what they say in a counseling session could be flagged for licensing boards, or that a co-worker may make a report if they seem depressed at work.

Bob Sise, a Montana addiction psychiatrist and co-founder of the nonprofit 406 Recovery, told state lawmakers that job stressors are playing into workers’ mental health challenges, such as long shifts and heavy patient loads. And with the rising cost of health care, physicians feel they’re sacrificing their commitment to healing as they routinely substitute optimal treatment for lesser care that patients can afford.

Sise said his practice now has roughly 20 health professionals as patients.

“They were able to access care before it was too late,” Sise said. “But they’re the exception.”

In Virginia, doctors, nurses, physician assistants, pharmacists, and students can join the state’s SafeHaven program. Melina Davis, CEO of the Medical Society of Virginia, said the service offers counseling and peer coaching with staffers available to answer a call 24/7.

“If you only have a moment at 2 a.m., or that’s when you had the chance to first process the death of a patient, then you can talk to somebody,” Davis said.

Those in the program are assured that those conversations are privileged and can’t be used in lawsuits. This year, the state is considering adding medical diagnoses under the program’s confidential protections.

States that have followed suit have slight variations, but most create a “safe haven” with two types of wellness and reporting systems. Those who seek out care before they’re impaired at work have broad privacy protections. The other defines a disciplinary track and monitoring system for those who pose a risk to themselves or others. Indiana and South Dakota followed Virginia’s lead in 2021.

States are also narrowing the time frame that licensing boards can ask about mental illness history. The American Medical Association has encouraged states to require health care workers to disclose current physical or mental health conditions, not past diagnoses.

Last year, Georgia updated its license renewal form to ask doctors if any current condition “for which you are not being appropriately treated” affects their ability to practice medicine. That update replaces a request for seven years of mental health history.

Even outside the “safe haven” framework, some states are grappling with how to grant doctors privacy while guaranteeing patient safety.

The Medical Board of California is creating a program to treat and monitor doctors with alcohol and drug illnesses. But patients’ advocates have argued too much privacy, even for voluntary treatment, could risk consumers’ well-being. They told the state medical board that patients have a right to know if their doctor has an addiction.

Davis said states should debate how to balance physicians’ privacy and patients’ safety.

“We in medical professions are supposed to be saving lives,” she said. “Where’s the line where that starts to fall off, where their personal situation could affect that? And how does the system know?”

According to the Montana Recovery Program website, it’s not a program of discipline but instead one “of support, monitoring, and accountability.” Participants may self-refer to the program or be referred by their licensing board.

Branscum, with the Montana Medical Association, said the state’s monitoring program is needed for cases in which an illness impairs a clinician’s work. But she wants that form of treatment to become the exception.

Vicky Byrd, CEO of the Montana Nurses Association, said nurses don’t tend to join the program until they’re forced to in order to keep their license. That leaves many nurses struggling in silence until untreated illness shows up in their work, she said.

“Let’s get them taken care of before it has to go on their license,” Byrd said.

Because after that point, she said, it’s hard to recover.

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

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This story can be republished for free (details).