ST. PAUL, Minn. — High school senior Joshua Yang understands sacrifice. When he was midway through 10th grade, his mom survived a terrible car crash. But her body developed tremors, and she lost mobility. After countless appointments, doctors diagnosed her with Parkinson’s disease, saying it was likely triggered by brain injuries sustained in the wreck.

At 15, Yang, an aspiring baseball player and member of his school’s debate team, took on a new role: his mother’s caregiver.

Researchers estimate that Yang, now 18, counted among at least 5.4 million U.S. children who provide care to an adult in their home. As state officials eye federal Medicaid funding cuts that could drastically reduce home care services for those who are disabled or have chronic health conditions, many predict that number will rise.

That’s bad news for kids: Studies show that when young people take on care for adults with medical conditions, their health and academic outcomes decline. At the same time, their loved ones receive untrained care.

“It all fell to me,” said Yang, whose sisters were 9 and 10 at the time of their mom’s accident, and whose stepdad worked nights. His grades fell and he quit after-school activities, he said, unable to spare the time.

Early on, Yang found reprieve from a personal care nurse who gave them supplies, such as adult diapers, and advice on items to purchase, such as a chair for the shower. And for about a year, Yang was able to work for a personal care agency and earn $1,000 a month caring for his mom — money that went toward her medication and family needs.

But at the beginning of 11th grade, a change to his mom’s insurance ended her personal care benefit, sending him into a runaround with his county’s Medicaid office in Minnesota. “For a solid month I was on my phone, on hold, in the back of the class, waiting for the ‘hello,’” he said. “I’d be in third period, saying, ‘Mr. Stepan, can I step out?’”

A report published in May by the U.S. Government Accountability Office reminded states that National Family Caregiver Support Program grants can be used to assist caregivers under 18. However, the future of those grants remains unclear: They are funded through the Older Americans Act, which is awaiting reauthorization; and the Administration for Community Living, which oversees the grants, was nearly halved in April as part of the reorganization of the Department of Health and Human Services under President Donald Trump.

Additionally, if Congress approves proposed cuts to Medicaid, one of the first casualties likely will be states’ home- and community-based service programs that provide critical financial relief to family caregivers, said Andrew Olenski, an economist at Lehigh University specializing in long-term health care.

Such programs, which differ by state but are paid for with federal dollars, are designed to ensure that Medicaid-eligible people in need of long-term care can continue living at home by covering in-home personal and nursing care. In 2021, they served almost 5% of all Medicaid participants, costing about $158 billion.

By law, Medicaid is required to cover necessary long-term care in a nursing home setting but not all home or community care programs. So, if states are forced to make cuts, those programs are vulnerable to being scaled back or eliminated.

If an aide who makes daily home visits, for example, is no longer an option, family caregivers could step in, Olenski said. But he pointed out that not all patients have adult children to care for them, and not all adult children can afford to step away from the workforce. And that could put more pressure on any kids at home.

“These things tend to roll downhill,” Olenski said.

Some studies show benefits to young people who step into caregiving roles, such as more self-confidence and improved family relationships. Yang said he feels more on top of things than his peers: “I have friends worrying about how to land a job interview, while I’ve already applied to seven or eight other jobs.”

But for many, the cost is steep. Young caregivers report more depression, anxiety, and stress than their peers. Their physical health tends to be worse, too, related to diet and lack of attention to their own care. And caregiving often becomes a significant drag on their education: A large study found that 15- to 18-year-old caregivers spent, on average, 42 fewer minutes per day on educational activities and 31 fewer minutes in class than their peers.

Schools in several states are taking notice. In Colorado, a statewide survey recently included its first question about caregiving and found that more than 12% of high schoolers provide care for someone in their home who is chronically ill, elderly, or disabled.

Rhode Island’s education department now requires every middle and high school to craft a policy to support caregiving students after a study published in 2023 found 29% of middle and high school students report caring for a younger or older family member for part of the day, and 7% said the role takes up most of their day. Rates were higher for Hispanic, Asian, and Black students than their white peers.

The results floored Lindsey Tavares, principal of Apprenticeship Exploration School, a charter high school in Cranston. Just under half her students identified as caregivers, she said. That awareness has changed conversations when students’ grades slip or the kids stop showing up on time or at all.

“We know now that this is a question we should be asking directly,” she said.

Students have shared stories of staying home to care for an ill sibling when a parent needs to work, missing school to translate doctors’ appointments, or working nights to pitch in financially, she said. Tavares and her team see it as their job to find an approach to help students persist. That might look like connecting the student to resources outside the school, offering mental health support, or working with a teacher to keep a student caught up.

“We can’t always solve their problem,” Tavares said. “But we can be really realistic about how we can get that student to finish high school.”

Rhode Island officials believe their state is the first to officially support caregiving students — work they’re doing in partnership with the Florida-based American Association for Caregiving Youth. In 2006, the association formed the Caregiving Youth Project, which works with schools to provide eligible students with peer group support, medical care training, overnight summer camp, and specialists tuned in to each student’s specific needs. This school year, more than 700 middle and high school students took part.

“For kids, it’s important for them to know they’re not alone,” said Julia Belkowitz, a pediatrician and an associate professor at the University of Miami who has studied student caregivers. “And for the rest of us, it’s important, as we consider policies, to know who’s really doing this work.”

In St. Paul, Joshua Yang had hoped to study civil engineering at the University of Minnesota, but decided instead to attend community college in the fall, where his schedule will make it simpler to continue living at home and caring for his mom.

But he sees some respite on the horizon as his sisters, now 12 and 13, prepare to take on a greater share of the caregiving. They’re “actual people” now with personalities and a sense of responsibility, he said with a laugh.

“It’s like, we all know that we’re the most meaningful people in our mom’s life, so let’s all help out,” he said.

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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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.

Subscribe to KFF Health News’ free Morning Briefing.

This article first appeared on KFF Health News and is republished here under a Creative Commons license.

The post Role Reversal: Millions of Kids Are Caregivers for Elders. Why Their Numbers Might Grow. appeared first on kffhealthnews.org

Note: The following A.I. based commentary is not part of the original article, reproduced above, but is offered in the hopes that it will promote greater media literacy and critical thinking, by making any potential bias more visible to the reader –Staff Editor.

Political Bias Rating: Center-Left

This article presents a perspective that highlights the challenges faced by young caregivers and emphasizes the negative impact of proposed Medicaid funding cuts, implicitly criticizing policies associated with the Trump administration’s Department of Health and Human Services reorganization. The framing draws attention to the social consequences of reduced federal support for home care, aligning with concerns typical of center-left viewpoints that prioritize social welfare and government assistance. While it reports facts and expert opinions, the tone and focus on potential harms from funding cuts suggest a mild progressive slant without overt partisanship or ideological rhetoric.

On Christmas Day at the WaTiki indoor water park, Hans Wirt was getting winded from following his son up the stairs to the waterslides.

Wirt’s breathing became more labored once they returned to the nearby hotel where they and Wirt’s girlfriend were staying while visiting family in Rapid City, South Dakota.

Then he grew nauseated and went pale. Wirt thought the cause might have been the altitude change between his home in Deltona, Florida — 33 feet above sea level — and Rapid City, at the edge of the Black Hills. But his 12-year-old son was worried and called for an ambulance.

“I could tell by the look in his eyes that there was something a little more to this,” Wirt said. “So I can kind of thank my son for saving my life.”

It turned out the 62-year-old was having a heart attack. A “lousy Christmas present,” Wirt said.

Medics stabilized Wirt before taking him to Monument Health — the only hospital in Rapid City with an emergency room — where he was treated over two days.

Then the bill came.

The Medical Procedure

Paramedics used a defibrillator to restore a normal heart rhythm. Doctors at the hospital gave Wirt various medications, used an electrocardiograph and other diagnostic and monitoring devices, and inserted stents into his arteries to improve blood flow to his heart.

The Final Bill

$95,523.73, including $32,998.90 for medical supplies, mostly related to the stents, and $28,879 for treatment in a cardiac catheterization lab. After unspecified hospital adjustments to the bill, Wirt owed $77,574.44.

The Billing Problem: Medicaid Across State Lines

Wirt is covered by Florida’s Medicaid program through Sunshine Health, a managed-care plan. But the South Dakota hospital refused to submit the bill to his out-of-state Medicaid plan, instead sending it to Wirt and eventually threatening to send the debt to a collection agency.

Medicaid, the government health insurance program primarily for low-income people and those with disabilities, is jointly funded by the federal government and states. States are responsible for administering Medicaid, and most contract with private insurance companies like Sunshine Health.

Federal law says state Medicaid programs must reimburse out-of-state hospitals for beneficiaries’ care in an emergency.

Many hospitals bill out-of-state Medicaid plans in such situations. If they don’t, they risk not being reimbursed at all, since Medicaid recipients probably won’t be able to afford large bills, said Katy DeBriere, who was legal director for the Florida Health Justice Project when she spoke with KFF Health News in April.

But there’s no federal law that requires them to do so, she said.

Federal court opinions have noted that hospitals are not required to bill Medicaid for every individual beneficiary they treat, even if they generally accept Medicaid.

Monument Health didn’t bill Wirt’s insurance because the hospital isn’t enrolled as a health care provider with Florida Medicaid, said hospital spokesperson Stephany Chalberg. She told KFF Health News that Monument bills Medicaid plans only in South Dakota and four bordering states: Wyoming, Montana, Nebraska, and Minnesota.

The hospital’s website says Medicaid patients who are not enrolled in one of those states “are responsible for any charges.”

“Due to the significant credentialing requirements of our multiple hospitals and hundreds of physicians we do not participate with all states,” a hospital representative wrote in a message to Wirt.

According to Florida’s Medicaid website, out-of-state providers who have treated one of its enrollees must submit five documents to bill the program, including a six-page application, a copy of the provider’s license, and a claim form.

The process is different in each state, and many Medicaid programs reimburse out-of-state providers at lower rates than those that are in-state, according to the Medicaid and CHIP Payment and Access Commission, a federal agency that advises Congress.

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Provider enrollment barriers leave “beneficiaries in an untenable situation, preventing them from accessing the coverage to which they are legally entitled,” Chalberg said.

Wirt decided to submit his bill to his Medicaid plan on his own. But he said Sunshine Health told him it can only process bills received directly from providers.

Elizabeth Boyd, a spokesperson for Sunshine Health, told KFF Health News that its staff contacted the hospital on Wirt’s behalf. She did not respond when asked why the plan can’t process bills submitted by patients or what more it could have done to help Wirt.

The Resolution

A few days after KFF Health News emailed officials at Monument Health for this story, Wirt noticed his balance due fell from more than $77,000 to $0.

Chalberg told KFF Health News that Monument Health covered Wirt’s bill through its charity care program. She said that “appropriate patients” are told about the program and that “before any bill is sent to collections, it is evaluated to determine whether the patient may qualify for our financial assistance policy.”

To retain tax-exempt status, nonprofit hospitals must have programs that provide free or discounted care to patients who can’t afford their bills.

But Wirt said that when he first contacted Monument Health after receiving his bill and said he couldn’t afford to pay it, officials didn’t mention the program. He said they didn’t share any resources when he asked whether there were outside groups that could help him pay the bill. Wirt said hospital officials just recommended setting up a payment plan, but the monthly bills were still too high for him to afford. “There’s a reason why I’m on Medicaid,” Wirt said. “It’s just beyond me how they can expect somebody who had Medicaid to come up with that kind of money. It’s unrealistic.”

The Takeaway

Sarah Somers, legal director at the National Health Law Program, said the various “cogs in the Medicaid system” didn’t operate correctly in Wirt’s situation. “Nobody’s exerting themselves enough to just smooth the way for this person.”

States are responsible for managing Medicaid and are therefore the main “cog,” Somers said. She said Medicaid managed-care companies are also supposed to intervene.

Somers and DeBriere said Medicaid recipients who receive bills they don’t think they owe should file a complaint with their state’s Medicaid program and, if they have one, their managed-care plan. They can also ask whether there is a Medicaid or managed-care caseworker who can advocate on their behalf.

The attorneys said patients should also contact a legal aid clinic or a consumer protection firm that specializes in medical debt. DeBriere said those organizations can help file complaints and communicate with the hospital.

DeBriere said that, had she assisted Wirt, she would have immediately sent a letter to Monument Health ordering it to stop billing him and to either register with Florida Medicaid to submit his bill or offer him charity care.

Wirt said the doctors who treated him and the medical care he received at Monument Health were excellent. He said he spoke out about the hospital’s billing practices because he doesn’t want others to endure the same experience.

“If I get sick and have a heart attack, I have to be sure that I do that here in Florida now instead of some other state,” he joked.

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!

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.

USE OUR CONTENT

This story can be republished for free (details).

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.

Subscribe to KFF Health News’ free Morning Briefing.

This article first appeared on KFF Health News and is republished here under a Creative Commons license.

The post A Medicaid Patient Had a Heart Attack While Traveling. He Owed Almost $78,000. appeared first on kffhealthnews.org

Note: The following A.I. based commentary is not part of the original article, reproduced above, but is offered in the hopes that it will promote greater media literacy and critical thinking, by making any potential bias more visible to the reader –Staff Editor.

Political Bias Rating: Center-Left

This content is primarily focused on health care issues, specifically problems encountered by Medicaid beneficiaries with out-of-state medical billing and insurance practices. It highlights the challenges faced by low-income and Medicaid patients in accessing affordable care and navigating complex administrative systems. The critique of hospital billing practices and Medicaid administration reflects concerns commonly associated with center-left perspectives, which emphasize stronger government oversight, expanded access to health care, and protections for vulnerable populations. However, the article maintains a factual, investigative tone without strong partisan language or advocacy, aligning it closer to a center-left rather than a far-left position.

The post In Arizona County That Backed Trump, Conflicted Feelings About Cutting Medicaid appeared first on kffhealthnews.org

Note: The following A.I. based commentary is not part of the original article, reproduced above, but is offered in the hopes that it will promote greater media literacy and critical thinking, by making any potential bias more visible to the reader –Staff Editor.

Political Bias Rating: Center-Left

This content presents a nuanced discussion of Medicaid, focusing on the complexities faced by residents in a conservative, rural area that heavily relies on the program. While it acknowledges conservative concerns about government waste and the desire for spending cuts, the article emphasizes the importance and benefits of Medicaid, particularly for vulnerable populations. It critiques proposed Republican-led cuts by highlighting the potential negative impact on individuals who depend on Medicaid, and it cites nonpartisan research and data supporting the program’s expansion and role in addressing health care gaps. The balanced but generally sympathetic framing toward Medicaid and its beneficiaries, alongside critical coverage of Republican proposals, suggests a Center-Left political bias.