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Desperate Families Search for Affordable Home Care

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Reed Abelson, The New York Times
Mon, 04 Dec 2023 10:00:00 +0000

It’s a good day when Frank Lee, a retired chef, can slip out to the hardware store, fairly confident that his wife, Robin, is in the hands of reliable help. He spends nearly every hour of every day anxiously overseeing her care at their home on the Isle of Palms, a barrier island near Charleston, South Carolina.

Robin Lee, 67, has had dementia for about a decade, but the couple was able to take overseas trips and enjoy their marriage of some 40 years until three years ago, when she grew more agitated, prone to sudden outbursts, and could no longer explain what she needed or wanted. He struggled to care for her largely on his own.

“As Mom’s condition got more difficult to navigate, he was just handling it,” said Jesse Lee, the youngest of the couple’s three adult children. “It was getting harder and harder. Something had to change, or they would both perish.”

Frank Lee’s search for trustworthy home health aides — an experience that millions of American families face — has often been exhausting and infuriating, but he has persisted. He didn’t entirely trust the care his wife would get in an assisted living facility. Last August, when a respite program paid for her brief stay in one so Frank, 69, could take a trip to the mountains, she fell and fractured her sacrum, the bone that connects the spine to the pelvis.

There is precious little assistance from the government for families who need a home health aide, unless they are poor. The people working in these jobs are often woefully underpaid and unprepared to help a frail, older person with dementia bathe and use the bathroom, or to defuse an angry outburst.

Usually, it is family that steps into the breach — grown children who cobble together a fragile chain of visitors to help an ailing father; a middle-aged daughter who returns to her childhood bedroom; a son-in-law working from home who keeps a watchful eye on a confused parent; a wife who can barely manage herself looking after a faltering husband.

Frank Lee finally found two aides on his own, with no help from an agency. Using the proceeds from the sale of his stake in a group of restaurants, including the popular Charleston bistro Slightly North of Broad, he pays them the going rate of about $30 an hour. Between his wife’s care and medical expenses, he estimates he’s spending between $80,000 and $100,000 a year.

“Who the hell can afford this?” he asked. “There’s no relief for families unless they have great wealth or see their wealth sucked away.” He worries that he will run out of money and be forced to sell their home of more than three decades. “Funds aren’t unlimited,” he said.

Credited with emphasizing local ingredients and mentoring young chefs in Charleston, Lee retired in 2016, a few years after his wife’s diagnosis.

In an interview at the time, he said, “My wife has given up her life to help me in my career, and now I need to pay attention to her.”

In 2020, he contacted a half-dozen home care agencies. Some couldn’t fill the position. Others sent aides who were quickly overwhelmed by his wife’s behavior. Doctors told the family they believed she has frontotemporal dementia, which appeared to affect her language and how she behaved.

One woman seemed promising, only to quit after a week or two. “We never saw her again,” Lee said. He tried a friend of the family for a time, but she left when her grandmother developed liver cancer.

“It was the whole year of going through different caregivers,” said son Jesse.

Finally, Frank found two women to help. One of them, Ronnie Smalls, has more than a dozen years of experience and is trained in dementia care. She has developed a rapport with Robin, who seems reassured by a quick touch. “We have a really good bond,” Smalls said. “I know her language, her expression.”

One day at the Lees’ cozy one-story house, decorated with furniture made by Robin, and with a yard overflowing with greenery, Smalls fed her lunch at the kitchen table with her husband and daughter. Robin seemed to enjoy the company, murmuring in response to the conversation.

At other times, she seemed oblivious to the people around her. She can no longer walk on her own. Two people are often needed to help her get up from a chair or go to the bathroom, transitions she often finds upsetting. A day without an aide — out because of illness or a family emergency — frays the tenuous links that hold the couple’s life together.

Lee said his wife barely resembles the woman he married, the one who loved hiking, skiing, and gardening, and who started a neighborhood preschool while raising their three children. A voracious reader, she is now largely silent, staring into space.

The prognosis is bleak, with doctors offering little to hang onto. “What’s the end game look like?” Lee asks, wondering if it would be better if his wife had the right to die rather than slowly disappear before his eyes. “As she disintegrates, I disintegrate,” he said. She recently qualified for hospice care, which will involve weekly visits from a nurse and a certified nursing assistant paid under Medicare.

Charleston is flush with retirees attracted by its low taxes and a warm climate, and it boasts of ways to care for them with large for-profit home health chains and a scattering of small agencies. But many families in Charleston and across the nation can’t find the help they need. And when they do, it’s often spotty and far more expensive than they can afford.

Most Americans want to remain in their own homes, living independently, for as long as possible. They want to avoid nursing homes, which they see as providing poor care, polls have found. And the ranks of older people who need such help will grow. By 2030, 1 in 5 Americans will be at least 65 as millions in the baby boomer generation retire.

In dozens of interviews, families described a desperate and sometimes fruitless search for aides to help loved ones with simple tasks on a predictable schedule at an hourly rate they can afford.

Roughly 8 million people 65 and older had dementia or needed help with two or more activities of basic daily life, like getting out of bed, according to an analysis of a federally funded survey of older Americans by KFF Health News and The New York Times. Only a million received paid help outside of a nursing home, and nearly 3 million had no help at all.

Most families can’t afford what agencies charge — about $27 an hour, according to Genworth, a long-term care insurance company. So, many take their chances on untrained caregivers found through word-of-mouth, Craigslist, or other resources.

A Scarcity of Workers

One of the main obstacles to finding paid help is the chronic shortage of workers. Some 3.7 million people had jobs as aides in home health or personal care in 2022, with half of them earning less than $30,000 year, or $14.51 an hour, according to the Bureau of Labor Statistics. The number of people needed is expected to increase by more than 20% over the next decade. But the working conditions are hard, the pay is usually bad, and the hours are inconsistent.

About 3 million people are working in private homes, according to a 2023 analysis by PHI, a nonprofit that studies and acts as an advocate for the workforce, although official estimates may not count many workers paid off the books or hired outside of an agency by a family. Eighty-five percent of home care workers are women, two-thirds are people of color, and roughly a third are immigrants. The pay is often so low that more than half qualify for public assistance like food stamps or Medicaid.

Dawn Geisler, 53, has made only $10 an hour working as a home health aide in the Charleston area for the past four years, without ever getting a raise. She declined to name the agency that employs her because she doesn’t want to lose her job.

Geisler discovered she liked the work after caring for her mother. Unlike an office job, “every day is just a little bit different,” she said. She now juggles two clients. She might accompany one to the doctor and keep the other one company. “I’m taking care of them like they were my own family,” she said.

The agency provides no guarantee of work and doesn’t always tell her what to expect when she walks through the door, except to say someone has Alzheimer’s or is in a wheelchair. Her supervisors often fail to let her know if her client goes to the hospital, so families know to call her cellphone. She has waited weeks for a new assignment without getting paid a penny. She herself has no health insurance and sometimes relies on food banks to put meals on the table.

“I’m not making enough to pay all the bills I have,” said Geisler, who joined an advocacy group called the Fight for $15, which is pushing to raise the minimum wage in South Carolina and across the country. When her car broke down, she couldn’t afford to get it fixed. Instead, she walked to work or borrowed her fiancé’s bicycle.

Most home health agencies nationwide are for-profit and are often criticized for ignoring the needs of workers in favor of the bottom line.

“The business models are based on cheap labor,” said Robyn Stone, senior vice president of research for LeadingAge, which represents nonprofit agencies. The industry has historically tolerated high turnover but now can’t attract enough workers in a strong, competitive job market. “I think there has been a rude awakening for a lot of these companies,” she said.

Many agencies have also refused to pay overtime or travel costs between jobs, and many have been accused of wage theft in lawsuits filed by home care workers or have been sanctioned by state and federal agencies.

Medicaid, the federal-state program that provides health care for the poor, is supposed to provide home aides but faces shortages of workers at the rates it pays workers. At least 20 states pay less than $20 an hour for a personal care aide, according to a recent state survey by KFF. Aides are often paid less under Medicaid than if they care for someone paying privately.

With low pay and few benefits, many people would rather work the checkout line in a supermarket or at a fast-food chain than take on the emotionally demanding job of caring for an older person, said Ashlee Pittmann, the chief executive of Interim HealthCare of Charleston, a home health agency. She said that she recently raised wages by $2 an hour and had had more success keeping employees, but that she still worried that “we may not be able to compete with some larger companies.”

The Biden administration failed to obtain an additional $400 billion from Congress for home- and community-based services to shift emphasis away from institutional care. President Joe Biden signed an executive order this year to encourage some reforms, and federal officials have proposed requiring home health agencies to spend 80 cents of every government dollar on paying workers under Medicaid. But so far, little has changed.

Falling Through the ‘Doughnut Hole

Long-term care coverage for most Americans is a yawning gap in government programs. And the chasm is widening as more Americans age into their 70s, 80s, and 90s.

The government’s main program for people 65 and older is Medicare, but it pays for a home aide only when a medical condition, like recovery from a stroke, has made a person eligible for a nurse or therapist to come to the home. And the aide is usually short-term. Medicare doesn’t cover long-term care.

Medicaid, which does pay for long-term care at home, is limited to serving the poor or those who can demonstrate they have hardly any assets. But, again, the worker shortage is so pervasive that waiting lists for aides are years long, leaving many people without any option except a nursing home.

So millions of Americans keep trying to hang in and stay home as long as they can. They’re not poor enough to qualify for Medicaid, but they can’t afford to hire someone privately.

Many fall through what April Abel, a former home health nurse from Roper St. Francis Healthcare in Charleston, described as “the doughnut hole.”

“I feel so bad for them because they don’t have the support system they need,” she said.

She tried fruitlessly for months to find help for Joanne Ganaway, 79 and in poor health, from charities or state programs while she visited her at home. Ganaway had trouble seeing because of a tear in her retina and was often confused about her medications, but the small pension she had earned after working nearly 20 years as a state employee made her ineligible for Medicaid-sponsored home care.

So Ganaway, who rarely leaves her house, relies on friends or family to get to the doctor or the store. She spends most of her day in a chair in the living room. “It has been difficult for me, to be honest,” she said.

Turning to Respite Services

With no hope of steady help, there is little left to offer overstretched wives, husbands, sons, and daughters other than a brief respite. The Biden administration has embraced the idea of respite services under Medicare, including a pilot program for the families of dementia patients that will begin in 2024.

One nonprofit, Respite Care Charleston, provides weekday drop-off sessions for people with dementia for almost four hours a day.

Lee’s wife went for a couple of years, and he still makes use of the center’s support groups, where caregivers talk about the strain of watching over a loved one’s decline.

On any given morning, nearly a dozen people with dementia gather around a table. Two staff members and a few volunteers work with the group as they play word games, banter, bat balls around, or send a small plastic jumping frog across the table.

Their visits cost $50 a session, including lunch, and the organization’s brief hours keep it under the minimum state requirements for licensing.

“We’re not going to turn someone away,” Sara Perry, the group’s executive director, said. “We have some folks who pay nothing.”

The service is a godsend, families say. Parkinson’s disease and a stroke have left Dottie Fulmer’s boyfriend, Martyn Howse, mentally and physically incapacitated, but he enjoys the sessions.

“Respite Care Charleston has been a real key to his keeping going,” she said, “to both of us, quite frankly, continuing to survive.”

——————————
By: Reed Abelson, The New York Times
Title: Desperate Families Search for Affordable Home Care
Sourced From: kffhealthnews.org/news/article/dying-broke-desperate-families-search-for-affordable-home-care/
Published Date: Mon, 04 Dec 2023 10:00:00 +0000

Kaiser Health News

Years Later, Centene Settlements With States Still Unfinished

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kffhealthnews.org – Andy Miller – 2025-03-05 04:00:00

More than three years ago, health insurance giant Centene Corp. settled allegations that it overcharged Medicaid programs in Ohio and Mississippi related to prescription drug billing.

Now at least 20 states have settled with Centene over its pharmacy benefit manager operation that coordinated the medications for Medicaid patients. Arizona was among the most recent to join the ranks, settling for an undisclosed payout, Richie Taylor, a spokesperson for the state’s attorney general, told KFF Health News in December.

All told, Centene has agreed to pay more than $1 billion in settlements, according to Cohen Milstein, one of the law firms representing states in the agreements. Meanwhile, St. Louis-based Centene reported $163 billion in revenue in 2024, largely proceeds from government health programs for Medicaid, Medicare, and the Affordable Care Act. The health care company has admitted no wrongdoing in the settlements.

Two state holdouts appear to remain: Georgia has yet to settle with Centene, even though the administration of Gov. Brian Kemp hired law firm Liston & Deas in 2019 to investigate state pharmacy benefit operations.

Florida hired the same law firm in 2021 to pursue overbilling allegations involving Centene, but state officials declined to answer a reporter’s questions about whether Florida has dropped the case, reached an undisclosed settlement, or is still discussing the issue.

Neither state has publicly disclosed what’s standing in the way of potentially tens of millions of dollars in Centene payouts, or whether negotiations are taking place. Because the deals are largely occurring outside the court system, the process between the private law firms hired by states and Centene remains generally out of public view.

Centene spokespeople did not return multiple phone calls and emails asking for updates. In 2022, the company said it was working on settlements with Georgia and eight other states, having reached deals with 13 others. And in a Securities and Exchange Commission filing in October, Centene said it had reached settlements with “the vast majority of states impacted” over the operations of its former pharmacy benefits manager.

Georgia has “taken disproportionately long compared to other states,” said Greg Reybold, a vice president of the American Pharmacy Cooperative, which represents independent pharmacies.

Meanwhile, Centene’s Georgia Medicaid plan, the Peach State Health Plan, lost its bid last year to continue its longtime participation in a Georgia Medicaid program in which companies cover the care for Medicaid recipients for a set fee from the government rather than for each medical service provided. The company, which has been part of the contract since the managed-care program began in 2006, filed a protest over the contract awards, saying that the process was “mismanaged, rife with errors and reckless practices.”

Nationally, pharmacy benefit managers, or PBMs, have come under increased scrutiny over accusations of pocketing discounts on medications or inflating costs in the years since Centene started settling its Medicaid-related allegations. Members of Congress have proposed major policy constraints on PBMs. Centene has since overhauled its PBM operation.

Still, a possible settlement in Georgia could bring in significant money to the state. California had the largest publicly disclosed settlement at $215 million, split with the federal government, but a settlement with Georgia could be in the range of the $88 million that Centene agreed to pay in the Ohio dispute, Reybold said.

The state should aggressively pursue a settlement with Centene, said Roland Behm, co-founder of the Georgia Mental Health Policy Partnership, who is a critic of Centene and its Georgia Medicaid plan. Behm said state Attorney General Chris Carr should take “the same tenacious prosecutorial action” against Centene that Carr’s agency takes against individuals involved in fraud against Medicaid, the federal-state program that provides health insurance coverage for those with low incomes or disabilities.

Carr’s office said in 2022 that it stood ready to represent Georgia in settlement negotiations with Centene. Carr, a Republican who has announced he’s running for governor in 2026, received tens of thousands of dollars in campaign contributions from Centene, its subsidiaries, and its executives, as did Kemp, a fellow Republican, KFF Health News reported in 2022. Contributions to the Kemp and Carr campaigns were part of more than $26.9 million that Centene, its subsidiaries, its top executives, and their spouses donated to state politicians in 33 states, to their political parties, and to nonprofit fundraising groups from 2015 through 2022.

Since 2022, the company and its political action committee have contributed, combined, at least $2 million more to the campaigns of Florida and Georgia candidates of both political parties, along with state party organizations and political committees, according to state campaign finance records.

When asked about a possible settlement, a spokesperson for Carr, Kara Murray, directed a reporter to the Georgia Department of Community Health, which administers Medicaid.

Fiona Roberts, a spokesperson for that agency, then told KFF Health News that the department “is actively pursuing options to ensure regulatory compliance with the state’s contract.” She declined to comment further.

Florida’s attorney general’s office directed a reporter to the state agency that oversees Medicaid, the Florida Agency for Health Care Administration. But that agency did not respond to multiple phone calls and emails requesting comment.

Rebecca Grapevine of Healthbeat contributed to this article.

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Home Improvements Can Help People Age Independently. But Medicare Seldom Picks Up the Bill.

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kffhealthnews.org – Joanne Kenen – 2025-03-03 04:00:00

Chikao Tsubaki had been having a terrible time.

In his mid-80s, he had a stroke. Then lymphoma. Then prostate cancer. He was fatigued, isolated, not all that steady on his feet.

Then Tsubaki took part in an innovative care initiative that, over four months, sent an occupational therapist, a nurse, and a handy worker to his home to help figure out what he needed to stay safe. In addition to grab bars and rails, the handy worker built a bookshelf so neither Tsubaki nor the books he cherished would topple over when he reached for them.

Reading “is kind of the back door for my cognitive health — my brain exercise,” said Tsubaki, a longtime community college teacher. Now 87, he lives independently and walks a mile and a half almost every day.

The program that helped Tsubaki remain independent, called Community Aging in Place: Advancing Better Living for Elders, or CAPABLE, has been around for 15 years and is offered in about 65 places across 26 states. It helps people 60 and up, and some younger people with disabilities or limitations, who want to remain at home but have trouble with activities like bathing, dressing, or moving around safely. Several published studies have found the program saves money and prevents falls, which the Centers for Disease Control and Prevention says contribute to the deaths of 41,000 older Americans and cost Medicare about $50 billion each year.

Despite evidence and accolades, CAPABLE remains small, serving roughly 4,600 people to date. Insurance seldom covers it (although the typical cost of $3,500 to $4,000 per client is less than many health care interventions). Traditional Medicare and most Medicare Advantage private insurance plans don’t cover it. Only four states use funds from Medicaid,the federal-state program for low-income and disabled people. CAPABLE gets by on a patchwork of grants from places like state agencies for aging and philanthropies.

The payment obstacles are an object lesson in how insurers, including Medicare, are built around paying for doctors and hospitals treating people who are injured or sick — not around community services that keep people healthy. Medicare has billing codes for treating a broken hip, but not for avoiding one, let alone for something like having a handy person “tack down loose carpet near stairs.”

And while keeping someone alive longer may be a desirable outcome, it’s not necessarily counted as savings under federal budget rules. A 2017 Centers for Medicare & Medicaid Services evaluation found that CAPABLE had high satisfaction rates and some savings. But its limited size made it hard to assess the long-term economic impact.

It’s unclear how the Trump administration will approach senior care.

The barriers to broader state or federal financing are frustrating, said Sarah Szanton, who helped create CAPABLE while working as a nurse practitioner doing home visits in west Baltimore. Some patients struggled to reach the door to open it for her. One tossed keys to her out of a second-story window, she recalled.

Seeking a solution, Szanton discovered a program called ABLE, which brought an occupational therapist and a handy worker to the home. Inspired by its success, Szanton developed CAPABLE, which added a nurse to check on medications, pain, and mental well-being, and do things like help participants communicate with doctors. It began in 2008. Szanton since 2021 has been the dean of Johns Hopkins University School of Nursing, which coordinates research on CAPABLE. The model is participatory, with the client and care team “problem-solving and brainstorming together,” said Amanda Goodenow, an occupational therapist who worked in hospitals and traditional home health before joining CAPABLE in Denver, where she also works for the CAPABLE National Center, the nonprofit that runs the program.

CAPABLE doesn’t profess to fix all the gaps in U.S. long-term care, and it doesn’t work with all older people. Those with dementia, for example, don’t qualify. But studies show it does help participants live more safely at home with greater mobility. And one study that Szanton co-authored estimated Medicare savings of around $20,000 per person would continue for two years after a CAPABLE intervention.

“To us, it’s so obvious the impact that can be made just in a short amount of time and with a small budget,” said Amy Eschbach, a nurse who has worked with CAPABLE clients in the St. Louis area, where a Medicare Advantage plan covers CAPABLE. That St. Louis program caps spending on home modifications at $1,300 a person.

Both Hill staff and CMS experts who have looked at CAPABLE do see potential routes to broader coverage. One senior Democratic House aide, who asked not to be identified because they were not allowed to speak publicly, said Medicare would have to establish careful parameters. For instance, CMS would have to decide which beneficiaries would be eligible. Everyone in Medicare? Or only those with low incomes? Could Medicare somehow ensure that only necessary home modifications are made — and that unscrupulous contractors don’t try to extract the equivalent of a “copay” or “deductible” from clients?

Szanton said there are safeguards and more could be built in. For instance, it’s the therapists like Goodenow, not the handy workers, who put in the work orders to stay on budget.

For Tsubaki, whose books are not only shelved but organized by topic, the benefits have endured.

“I became more independent. I’m able to handle most of my activities. I go shopping, to the library, and so forth,” he said. His pace is slow, he acknowledged. But he gets there.

Kenen is the journalist-in-residence and a faculty member at Johns Hopkins University School of Public Health. She is not affiliated with the CAPABLE program.

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A Runner Was Hit by a Car, Then by a Surprise Ambulance Bill

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kffhealthnews.org – Sandy West – 2025-02-28 04:00:00

Jagdish Whitten was on a run in July 2023 when a car hit him as he crossed a busy San Francisco street. Whitten, then 25, described doing “a little flip” over the vehicle and landing in the street before getting himself to the curb.

Concerned onlookers called an ambulance. But Whitten instead had friends pick him up and take him to a nearby hospital, the Helen Diller Medical Center, operated by the University of California-San Francisco.

“I knew that ambulances were expensive, and I didn’t think I was going to die,” he said.

Whitten said doctors treated him for a mild concussion, a broken toe, and bruises.As he sat in a hospital bed, attached to an IV and wearing a neck brace, Whitten said, doctors told him that because he had suffered a traumatic injury, they had to send him by ambulance to the city’s only trauma center, Zuckerberg San Francisco General Hospital.

After a short ambulance ride, Whitten said, emergency room doctors checked him out, told him he had already received appropriate treatment, and released him.

Then the bill came.

The Medical Procedure

Traumatic injuries are those that threaten life or limb, and some facilities specialize in providing care for them. For someone hit by a car, that can include stabilizing vital signs, screening for internal injuries, and treating broken bones and concussions. Zuckerberg Hospital is a Level 1 trauma center, meaning it can provide any care needed for severely injured patients.

In emergency medicine, it is standard to transfer patients to centers best equipped to provide care. Ambulances are typically used for transfers because they are able to handle trauma patients, with tools to aid in resuscitation, immobilization, and life support.

At the first hospital, Whitten said, doctors performed a thorough workup, including a CT scan and X-rays, and advised him to follow up with his primary care physician and an orthopedic doctor. He was evaluated at the second hospital and released without additional treatment, he said.

The Final Bill

$12,872.99 for a 6-mile ambulance ride between hospitals: a $11,670.11 base rate, $737.16 for mileage, $314.45 for EKG monitoring, and $151.27 for “infection control.”

The Billing Problem: Surprise Bills Are Common With Ground Ambulances

Ground ambulance services are operated by a hodgepodge of private and public entities — with no uniform structure, or regulatory oversight, for billing — and most function outside insurance networks. Patients don’t typically have a choice of ambulance provider.

There are state and federal laws shielding patients from out-of-network ambulance bills, but none of those protections applied in Whitten’s case.

Whitten was insured under his father’s employer-sponsored health plan from Anthem Blue Cross. So when he received a nearly $13,000 bill months after his short transfer ride, he sent a photo of it to his dad.

Brian Whitten said the bills from the two hospitals — and the family’s out-of-pocket responsibility — were in line with what he had anticipated. But he was stunned by his son’s ambulance bill from AMR, one of the nation’s largest ambulance providers. Anthem Blue Cross denied the claim, saying the ambulance was out-of-network and required pre-authorization.

“It didn’t make a whole lot of sense to me, because the doctor is the one who put him in the ambulance,” Brian Whitten said. “It’s not like somehow he just decided, ‘Hey, can I take an ambulance ride?’”

Kristen Bole, a UCSF spokesperson, said in a statement that the health system’s standard of care is to stabilize patients and, when appropriate, transfer them to other medical facilities that are most appropriate to care for patients’ needs, adding that ambulance transfers between hospitals are standard practice.

While the medical system at large relies on negotiated prices for services, ambulance services operate largely outside of the competitive marketplace, said Patricia Kelmar, senior director of health care campaigns for PIRG, a nonpartisan consumer protection and good-government advocacy organization.

Ambulance transfers between hospitals to ensure the highest quality of care available are fairly common, Kelmar said. And with many hospitals being purchased and consolidated, it would follow that the number of ambulance transfers between facilities could increase as specialized medical units at any given hospital are downsized or eliminated, she said.

According to a study of private insurance claims data conducted in 2023, about 80% of ground ambulance rides resulted in out-of-network billing.

Generally, out-of-network providers may charge patients for the remainder of their bill after insurance pays. In some cases, patients can be on the hook even when they did not knowingly choose the out-of-network provider. These bills are known as “surprise” bills.

“It’s a financial burden, a significant financial burden,” said Kelmar, who is a member of the committee created to advise federal lawmakers on surprise bills and emergency ambulance transportation.

Eighteen states have implemented laws regulating surprise ambulance billing. A California law cracking down on surprise ambulance billing took effect on Jan. 1, 2024 — months after Jagdish Whitten’s ambulance ride.But Kelmar said those state laws don’t really help people with employer-sponsored insurance, because those plans are beyond state control — which is why federal legislation is so important, she said.

As of 2022, federal law protects patients from receiving some surprise bills, especially for emergency services. But while lawmakers included protections against air ambulance bills in the law, known as the No Surprises Act, they excluded ground ambulance transports.

The Resolution

Whitten’s father filed an insurance appeal on his son’s behalf, which Anthem granted. The insurer paid AMR $9,966.60.

Michael Bowman, a spokesperson for Anthem, said AMR had not submitted all the information it required to process the claim, leading to the initial denial. After consulting with AMR, Anthem paid its coverage amount, Bowman said.

But the insurer’s payment still left Whitten with a $2,906.39 bill for his out-of-network ambulance ride. Brian Whitten said he called an AMR customer service number several times to contest the remaining charges but was unable to bypass its automated system and speak with a human.

“I couldn’t find a way to talk to somebody about this bill other than how to pay it, and I didn’t want to pay it,” he said.

Unsuccessful and frustrated, Brian Whitten paid the remaining bill in January 2024, he said, concerned it would be turned over to a collection agency and hurt his son’s credit — and his well-being.

There was one more twist: He was shocked when he later reviewed his credit card statements and discovered that AMR had quietly but fully refunded his payment in October.

“It’s amazing that he got his money back,” Kelmar said. “That’s what’s shocking.”

In a statement, Suzie Robinson, vice president of revenue cycle management with AMR, said the company’s third-party billing agency regularly performs audits to ensure accuracy. An audit of Jagdish Whitten’s bill “revealed that the care provided did not meet the criteria for critical care,” Robinson said, which prompted the full refund.

Robinson said audits indicated fewer than 1% of its 4 million medical encounters annually are billed incorrectly.

The Takeaway

Robinson said patients who feel that AMR has billed them incorrectly should contact the company via email.

For patients in need of an ambulance in an emergency, there are few protections — and usually few options: Sometimes you don’t have a better choice than to get in.

Federal protections require that health plans cover certain surprise bills, with patients paying only what they would if they had received in-network care. Expanding those protections to ground ambulance bills would require Congress to act.

Ambulance providers deserve to be appropriately compensated for their vital role in our medical system, Kelmar said. But the system as it stands almost incentivizes providers to charge a higher rate, which can lead to surprise billing and financial hardship for patients and their families, she said.

Kelmar said she worries not just about the debt those bills create for consumers but also that people may decline vital ambulance transportation in an emergency, for fear of getting hit with an exorbitant bill.

“We just need to bring some sense back to the system,” she said.

Bill of the Month is a crowdsourced investigation by KFF Health News and The Washington Post’s Well+Being that dissects and explains medical bills. Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, at the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? Tell us about it!

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