But if approved by voters in November, it’s unclear how much money the ballot initiative would raise, how quickly the funding would become available, and how lawmakers would spend it.

The measure would steer proceeds from a first-in-the-nation wealth tax to a state healthcare fund, giving the governor and lawmakers the power to decide how to spend what California’s nonpartisan legislative analyst “tens of billions of dollars.” Backers say it could raise up to $100 billion over five years to keep hospitals and emergency rooms open and preserve insurance coverage for millions of Californians. Yet, community health centers, doctors, and other healthcare entities that might benefit from such a cash infusion argue that the union spearheading the measure has readied a blank check for politicians.

“I’m not sure that you can say, with full security, that this will stop clinics from being closed or healthcare workers from being laid off, or people from losing their healthcare,” said Chris Hoene, executive director of the California Budget & Policy Center, a left-leaning nonprofit.

Can’t see the audio player? Visit kffhealthnews.org to listen.

Taxing the Ultrarich

Put on the ballot by one of California’s largest healthcare unions, Proposition 40 would impose a one-time 5% tax on with a net worth of at least $1 billion, including most of their stock holdings, yachts, and artwork. It would apply to those who were residents of California on Jan. 1, 2026. Real estate, pensions, and retirement accounts would generally be exempt.

The revenue raised is intended to offset the roughly in anticipated losses to the Golden State from congressional Republicans’ One Big Beautiful Bill Act. Over the next four years, state and federal funding cuts are projected to nearly double California’s uninsured population, which stands at , according to the University of California-Berkeley Labor Center.

Securing additional tax revenue is essential because state lawmakers have yet to come up with a way to pay for healthcare services that will be affected by the cuts, said Dave Regan, president of Service Employees International Union-United Healthcare Workers West, which represents hospital workers and got the wealth tax on the ballot. It would earmark 90% of the tax revenue for healthcare, while the remaining 10% would be split between food assistance and education at lawmakers’ discretion. Regan said such broad categories would give politicians flexibility to be more responsive to the looming cuts.

“Figuring out or predicting exactly what the fallout will be, of where reductions and cuts get made, in a complicated healthcare system, it’s just too difficult to predict,” Regan said.

Among the choices the next governor and lawmakers will face are whether to provide healthcare to people cut off by the new federal Medicaid work requirements, reverse state rollbacks limiting coverage for immigrants with legal status, or raise the low physician reimbursement rates that make some providers reluctant to accept patients enrolled in Medi-Cal, the state’s version of Medicaid.

Lawmakers could also shore up subsidies on Covered California, the state’s health insurance marketplace, whose enrollees have seen their premiums skyrocket after losing millions in federal assistance after Congress last year let enhanced subsides expire.

Most of the money must be spent on health, but healthcare experts said the measure’s ambiguous language could allow lawmakers to use the new billionaire health fund to replace existing state dollars, contrary to the text of the proposition.

“A lot of times these propositions are written in a way to get attention and get support,” said Glenn Melnick, a healthcare economist at the University of Southern California. “But in fact, they can be used for other things later.”

Instead, the healthcare industry is pushing for a long-term funding plan. René Bravo, a pediatrician in San Luis Obispo County and the president of the California Medical Association, worries that a one-time infusion of tax dollars “is going to run out.”

“We need to work on a more sustainable, durable funding mechanism for the Medi-Cal system,” he said.

At the same time, doctors are asking him what will happen when the biggest Medi-Cal eligibility cuts begin to take effect next year. Even if voters approve the ballot measure, the money wouldn’t be available for at least a few months while the state collects the tax. And billionaires could spread their payments over five years.

Californians Divided

Pasadena resident Lynne Wines, a 72-year-old retired banker, knows the state needs the money. But she worries that wealthy investors will see the measure as a precedent and flee the state. Even though the ballot measure is clear that it’s a one-time tax, Wines said it’s a slippery slope.

“Taxes have a way of being needed over and over, and politicians have a way of finding those needs,” Wines said. “So, I don’t really feel secure that this is just a one-time thing.”

She noted that Google co-founder and billionaire Sergey Brin bought a home in Nevada and moved some of his businesses to the Silver State late last year. He is backing ad campaigns opposing the measure. Brin has given more than $100 million to a nonprofit promoting two competing measures, Propositions 41 and 42, designed to blunt or block it, according to contributions filed with the secretary of state’s office. One would count some new state taxes toward California’s overall spending limit and require the state auditor to review new state tax proposals before voters weigh in. The other would prohibit new state taxes on personal property, intellectual property, retirement accounts, and other assets.

GOP gubernatorial candidate Steve Hilton, who has been endorsed by President Donald Trump, warned on CNN in June that just the threat of the tax “has sent trillions of dollars, by some estimates, of wealth leaving the state.” A March study by the conservative Hoover Institution at Stanford University projected that the billionaire tax would , citing, in part, the lost revenue from billionaires who have already left the state.

California voters appear torn over departing billionaires. Two independent September polls suggested voter support for Proposition 40 varied from a to a .

Pasadena resident Steve Erler, 74, works full-time as a building manager because he can’t afford to retire. He worries that federal cuts will hurt children and seniors.

“These people who are making all this money, they can never spend it all. What are they going to do, buy another house in the Hamptons, buy another jet? They don’t need that,” Erler said while out walking his dog in August. “They need to be able to say when they go to bed at night, ‘I helped a child with healthcare. I helped a senior get fed.’ That’s what’s important,” he said.

Democrats are divided — one of many ideological fights playing out nationwide this election cycle as progressives take on more centrist candidates. U.S. Sen. (I-Vt.) and the have endorsed Proposition 40, while Gov. Gavin Newsom, who is exploring a presidential bid, and Democratic gubernatorial nominee Xavier Becerra oppose it while saying that ultrawealthy or high-earning people should pay more. “It’s time for an economic reset, a true minimum tax on billionaires that, well, ensures the people at the very top pay at least the tax rate their own workers pay,” said Newsom, who supports a , although legislation for a federal has stalled.

If voters approve the ballot measure, political analysts said, it could show other states that taxing the wealthy may help close budget gaps and pay for essential services. Already several Democratic states, including , , , and , have approved millionaire taxes, but those have been limited to income, not overall wealth. Voters in Washington state will decide this fall whether to .

“I do think this is just the beginning of these proposals nationwide,” said Melnick, the USC healthcare economist.

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Next, she drove to meet an 85-year-old and her daughter, who had come in from out of town. The older woman had “pretty advanced dementia” and was scheduled to move into the secure memory care unit of a senior living facility that day, said Martinelli, who works as an aging life care manager with Mir Care Consultants in Central Texas. The three of them had a 9 a.m. meeting with the primary care doctor who would complete the paperwork for the move.

At the meeting, Martinelli explained the situation, and the doctor said he’d fill in the patient’s forms that afternoon. But later in the day, she got a call from a colleague saying that the doctor wouldn’t be able to complete the forms that day after all. That created a scramble because the woman wasn’t safe alone in her house. Martinelli ended up calling a home care agency she trusted. “I begged them to provide me with a caregiver in the next four hours,” she said.

If a combination of appointments, bureaucracy, vigilance, and worry about a vulnerable older person — often interspersed with medical emergencies — sounds familiar, it might help to know about a service its providers ruefully call the best-kept secret in eldercare.

Independent certified professionals like Martinelli used to be known as geriatric care managers. That’s what I called the people who make the 125-mile move from his apartment to a continuing care community near me, and later helped my disabled sister transition from her home to an assisted living facility.

I also used words like “godsend” and “indispensable.” After the moves, the care managers kept tabs on both my father and sister monthly and eased my fears that something urgent might strike the moment I left on a vacation or a work trip.

About a decade ago, these experts rebranded themselves as aging life care managers. It usually takes a couple of years to become one. Most enter the profession as nurses or social workers; some are physical or occupational therapists or gerontologists. They must attain a required combination of before they can take the certification exam.

The Aging Life Care Association, the nonprofit that represents these professionals, was founded in the 1980s and has grown to more than 2,000 members, but care managers still have a persistent public awareness problem.

“When we talk to someone, they say, ‘I wish I could have called you six months ago, but I didn’t know you existed,’” said Susy Elder Murphy, who owns Aging Well Eldercare, a large practice serving Washington, D.C., and its Maryland suburbs.

The caller is typically an adult child, the Aging Life Care Association has reported. Martinelli described a common scenario: “Mom is in the hospital, or the children went to visit and hadn’t realized she was so sick. They’re in a crisis.”

Enter the aging life care manager. What distinguishes her (it is usually a woman) from people with confusingly similar names — senior care advisers, patient advocates, care navigators — is her independence.

Aging life care managers work for the client and the family paying them, not for hospitals or insurance companies. Moreover, the association’s specifically prohibits “accepting or giving referral fees, fee splitting, kickbacks or other similar arrangements in exchange for client referrals.”

Contrast that with companies that promise free advice on senior living, like A Place for Mom. Care facilities pay A Place for Mom fees for steering new residents their way, as the organization . Advisers for companies that receive fees may be unlikely to recommend places that don’t pay, or to recommend home care, unless the company also contracts with local agencies.

“They’re really marketers, salespeople,” Julie Wagner, chief executive of the Aging Life Care Association, said about the referral companies. Some companies are about these financial incentives.

“If you want to buy a car and you go to the Ford dealer, they will not say, ‘I really see you in a Subaru,’” Murphy said. “You should be talking to someone who’s objective, neutral, and experienced.”

Care managers don’t come cheap. Wagner said association members’ hourly rates range from $150 to $350, with big geographic variations. In Texas, Mir’s standard rate is $185 an hour, billed in 15-minute increments. In Washington, Murphy’s practice charges $210 an hour. Sometimes families share the cost, as my sister and I did. And in some cities, social service agencies provide these specialists on a sliding scale.

Aging life care managers serve as coordinators, not hands-on caregivers, and the range of services they provide is quite broad.

They can, for example: Arrange and oversee a move to or within a senior living facility. Deal with insurers, including Medicare and Medicaid. Drive a client to the dentist. Recommend not only local residential communities and home care agencies but elder law lawyers, medical specialists, therapists, , and hospice organizations. Visit weekly or monthly to see that everything is going smoothly. Alert family members if it isn’t.

“A part of our job is mediating between family members, acting as a sounding board,” Martinelli said.

In fact, care managers like Murphy find their clients often seem more willing to listen to them than to their adult children — even if the advice is the same. “Your mom didn’t change our diapers or teach us to talk,” she said. “It’s a different relationship.”

In a of clients and families commissioned by the Aging Life Care Association, “the responses were overwhelmingly positive,” said Jullie Gray, a co-author of the study who teaches at the University of Washington School of Social Work.

The nearly 200 respondents did not constitute a representative national sample, Gray said. But 93% said the benefits of hiring an aging life care manager outweighed the costs, and 99% said they would recommend such a manager to someone else. The survey’s findings were presented at the 2025 meeting of the Gerontological Society of America.

Jeffrey Bernstein, an engineer in Middleton, Massachusetts, has for years relied on Aging Well Eldercare for help with his parents, two older siblings, and an aunt, all in Maryland. Like many people who eventually learn about care managers, “I had no idea such a person existed,” he said, until his wife read about them in a magazine.

Bernstein, 65, was unable to relocate to care for his family directly. But with care managers, “when something came up, they were there, they stepped up,” he said. “More importantly, they knew what to do when I wouldn’t have. It was tremendously helpful for my peace of mind.”

The same was true with Martinelli’s 85-year-old client in Austin. She spent the night with temporary caregivers and moved into her new home in the memory care unit that Tuesday, after her doctor finally produced the necessary documentation. “She went in just before noon,” Martinelli reported. “She had lunch.”

How was the new resident adjusting? “It’s been OK,” Martinelli said, sounding relieved. “So far, so good.”

The New Old Age is produced through a partnership with .

This article first appeared on ³Ô¹Ï²»´òìÈ and is republished here under a .

But Democratic strongholds across the country — including Oregon, California, , and — have more ambitious goals: single-payer, universal healthcare systems.

No state is closer to that goal than Oregon. A panel created by the state legislature in 2023 is slated to send lawmakers its proposal for a universal health plan by Dec. 1. The nine-person seeks to establish, starting in 2032, medical, vision, dental, and mental health benefits for every state resident from cradle to grave — with no premiums, deductibles, or copayments. Lawmakers could vote on a plan during the 2027 legislative session or refer it to voters as a ballot measure in 2028.

If approved, the state would be the first in the U.S. to implement what’s called a single-payer health coverage system. It could serve as a model for other states — and potentially the nation.

Proponents of the proposal argue that the public supports universal healthcare more than ever as healthcare spending and complexity grow. patients often delay care due to out-of-pocket costs. And medical debt remains a in the nation.

States have often served as laboratories to test health policies later implemented nationally. The Affordable Care Act was modeled after Massachusetts’ attempt to achieve universal health insurance coverage, once single-payer efforts there stalled. And Canada’s universal healthcare system began with a provincial plan in Saskatchewan.

“In the short to medium term, there is no chance that ‘Medicare for All’ can be passed at the national level,” said , a University of North Carolina health policy professor. “That’s where the states come in. A state like Oregon provides a more hospitable political environment and a more realistic path to single-payer reform.”

But advocates of the plan expect a significant fight from healthcare behemoths, including large hospital systems, seeking to sour public opinion on making such widespread changes. are health insurers. The industry’s deep pockets have helped derail myriad universal healthcare efforts at the federal and state levels.

In 2011, the Vermont Legislature voted to implement a universal healthcare plan but, three years later, Democratic Gov. Peter Shumlin, who had campaigned on the promise of single-payer, pulled the plug, citing “potential economic disruption.”

States that took the issue directly to voters have fared no better. Ballot measures in in 2016, in 2002, and in 1994 all failed by large margins.

“The aspirations of progressive reformers usually run smack into sobering political realities,” Oberlander said. “Translating a slogan into a legislative and political reality is a daunting task.”

Redirected Healthcare Dollars

Oregon’s proposal seeks to maintain the current level of spending on healthcare by government, business, and consumers with new corporate and personal taxes to replace insurance premiums and other out-of-pocket costs. Those would be combined with federal and state spending to create a single fund from which all hospitals, doctors, and other practitioners would be paid.

Board members said savings from cutting red tape, reducing fraud, and negotiating drug costs should allow the state to provide better benefits to more people.

In , the board estimated that a 30-year-old making $55,000 and purchasing a benchmark silver-level plan through the Affordable Care Act now pays $5,478 a year for insurance premiums in Oregon, but instead could pay $2,331 in taxes under the proposed plan.

Someone making $55,000 a year with coverage through their employer now pays $3,063 in premiums and out-of-pocket costs. Under the draft plan, that person could pay nothing for health services and could see any doctor in the state.

Currently, many employers pay much of the health insurance costs for their workers. The plan seeks to maintain those contributions by establishing a corporate payroll tax for companies whose payrolls exceed $500,000. Their employees could receive a partial tax credit for the taxes their employers pay. As a result, 31% to 60% of Oregonians wouldn’t pay anything for health benefits.

More affluent people, however, could end up paying more than they do now. The exact numbers would depend on how lawmakers set tax rates and payment thresholds.

“What we are proposing is something very different,” said , executive director of the Oregon board. “Everyone contributes based on the amount that they are able to contribute and not based on utilization.”

Messaging Challenge Lies Ahead

The plan’s backers will try to convince hospitals and health systems that they would benefit from reducing red tape and eliminating unpaid bills. Currently, hospitals to bill dozens of public and private health plans, each with its own coverage and billing rules. A single plan covering everyone in the state could streamline the process, saving billions.

Rural hospitals could gain financial stability. They now often struggle to stay afloat because they typically have higher rates of patients who are uninsured or on Medicaid, with its often low reimbursement rates.

Hospitals aren’t so sure.

“The universal health plan proposal preserves much of the broken, fragmented status quo and adds new taxes and complexity that Oregonians can’t afford,” said Becky Hultberg, president and CEO of the . “With federal policy changes looming, we are entering a period of tremendous upheaval. This proposal could destabilize a system that is already struggling.”

Under the proposal, doctors and other practitioners would be paid somewhere between what Medicare pays on the low end and what private insurance pays on the high end. Although total payments to doctors would remain unchanged, rates would be negotiated with physician groups to shift more money into primary care and less into specialty services.

But it is unclear whether doctors would agree that more patient time, fewer administrative hurdles, and no more unpaid bills would be worth a payment structure that could cause specialists to lose out.

“There’s always winners and losers in designing something like this, and so how to distribute those is the hardest part,” said , an associate health policy professor at Pacific University who is slated to join the Oregon board in January. “But the second-hardest part is, I think, messaging this.”

Courtni Dresser, vice president of government relations for the , said her physicians group shares many of the board’s goals in improving access to care and reducing administrative burdens. But the group has yet to declare its support or opposition to the effort.

Health insurers haven’t formally weighed in on Oregon’s proposal either, but a single-payer system would, in essence, close off Oregon to any private healthcare plans.

“We expect insurance companies to put every ounce of money they can against this idea because our system is broken and they profit from it,” said Collin Stackhouse, communications coordinator for , a consumer group advocating for universal healthcare.

, a former insurance company executive who now works to expose industry influence, said he expects health plans to hammer the Oregon proposal with claims of high taxes, loss of choice, and the specter of “socialized medicine.”

“Most people go year to year without testing the limits of their health insurance policy,” Potter said. “And so, they’re easily scared into thinking that something valuable will be taken away from them, and that they will have something that’s inferior in its place.”

Health insurers argue their health plans help shield consumers from the full impact of rising healthcare costs.

“Americans consistently report strong satisfaction with their health coverage, including more than 180 million covered through work and 36 million who choose Medicare Advantage,” said Chris Bond, a spokesperson for the health insurance . “Policy solutions are needed to rein in the ever-higher prices charged by hospitals and drugmakers and make care more affordable for everyone.”

Federal Approval Needed

It’s unclear whether Oregon could secure federal approval to redirect Medicare and Medicaid dollars into its universal plan. Backers of the proposal do not expect the Trump administration to be receptive but say it will be years before approval is needed and hope the 2028 presidential election ushers in a more supportive administration. If federal waivers are not secured, Oregon could proceed in stages, starting with the non-Medicare population.

In California, Democratic candidates for governor are not debating whether to implement single-payer but how. New York lawmakers are debating a single-payer bill called the . And in Washington, state legislators have created a commission to design a universal healthcare plan.

The Oregon board has had regular contact with teams working on single-payer proposals in California and Washington, sharing approaches and looking for ways to collaborate, McDonell said.

, an Oregon family physician and a member of Physicians for a National Health Program, said he could envision the other West Coast states joining Oregon in implementing single-payer, much as California, Washington, and ±á²¹·É²¹¾±â€˜i have in to counter changes in federal vaccine recommendations.

“If our four states could do it,” he said, “that would be the momentum we would need to get it nationally.”

This article first appeared on ³Ô¹Ï²»´òìÈ and is republished here under a .

Another ArchCare nursing home, on Staten Island, has shut down a full floor. North of the city, in Dutchess County, its Ferncliff Nursing Home has contracted from 309 available beds to 196.

The eight nursing homes owned by ArchCare, a nonprofit that provides eldercare through the Archdiocese of New York, have 269 fewer usable beds than they did 18 months ago, a nearly 12% decline, creating waiting lists for patients seeking long-term care.

Across New York state, 24 nursing homes have closed since 2020, resulting in a loss of more than 3,000 licensed beds, according to LeadingAge New York, which represents nonprofit senior living organizations.

That mirrors . In 2015, the Centers for Medicare & Medicaid Services certified 15,648 nursing facilities. A decade later, that number had fallen by more than 900.

With the oldest baby boomers turning 80 this year, an age when the need for long-term care climbs sharply, researchers are sounding alarms. Will there be enough nursing home beds for a rapidly graying nation?

“We’re seeing a serious problem and it’s heading in the wrong direction,” said David Grabowski, a health policy researcher at Harvard Medical School. He is an author of a study in JAMA Internal Medicine that in national nursing home capacity from 2019 to 2024. “As you look at the demographics, this is only going to get worse, maybe a lot worse,” he said, especially given looming Trump administration policies on immigration and Medicaid financing.

The reasons for the shrinkage?

ArchCare blames inadequate state reimbursement for Medicaid, a perennial industry complaint. The primary payer for nursing home care, Medicaid provides less than the daily cost of care, said Clif Porter, chief executive of the American Health Care Association, an industry trade group.

“Before the pandemic and inflation, the losses were sustainable,” said Jason Hutchens, ArchCare’s chief operating officer. More recently, he said, “we were running at an unsustainable loss — we had no choice.”

Nursing homes, , try to compensate by attracting short-stay patients covered by Medicare, which pays higher rates than Medicaid. When they can’t, “unless you’re extremely rapacious or extremely efficient, you’re not going to make it,” said Vincent Mor, a health services researcher at the Brown University School of Public Health who is an author of an article, published in the New England Journal of Medicine, about reduced capacity. “The numbers don’t add up.”

Staff shortages, which have plagued nursing homes for decades, have also caused contractions and closures. Nursing home aides work stressful, low-paying jobs with historically high turnover rates. Their median hourly wage last year was $20.67, according to , a research and advocacy group for direct care workers. Although pay has risen over the past decade, about 40% of nursing home aides rely on some form of public assistance, such as Medicaid or the Supplemental Nutrition Assistance Program, PHI reported.

The number of nursing home aides has rebounded from the covid pandemic, according to PHI, but fewer are working than in 2015. And while hiring and retention have improved, Porter said, “there’s still a significant gap between demand, especially future demand, and where the workforce currently is.”

National occupancy rates, which fell sharply during the pandemic, have returned to a more typical 80%.

That figure can be misleading; it doesn’t mean 1 bed in 5 sit empty, awaiting a patient. Occupancy counts state-licensed beds, but the more meaningful number is operating beds — how many are actually available depending on a facility’s staffing and other factors.

That number is usually lower and, in many cases, sinking. The American Health Care Association reported in 2024 that almost half of nursing homes were and 57% had waiting lists for new residents.

It’s possible, of course, that they also face financial losses because of lower demand. “Nursing homes close because people don’t want to go to nursing homes,” said Sam Brooks, director of public policy for the National Consumer Voice for Quality Long-Term Care, an advocacy group. “The quality is so low that people avoid them like the plague.”

Last year, Medicare inspectors found at least one quality violation serious enough to harm or jeopardize residents in 27% of nursing homes, according to an analysis by KFF, a health information nonprofit.

In recent decades alternatives emerged that diverted patients from nursing homes. About a million older adults currently live in assisted living facilities. And among Medicaid recipients, the ongoing policy shift called “rebalancing” has enabled more people to receive services at home () rather than in nursing homes.

In 1988, only 10% of Medicaid expenditures for long-term services went to home- or community-based services; the rest paid for institutional care. By 2020, more than 60% of expenditures funded home and community care, said Priya Chidambaram, a KFF senior policy manager specializing in Medicaid, citing a staff analysis.

How big a problem these trends pose depends partly on geography. The decline in the number of nursing homes in rural locations — about 10% from 2015 to 2025 — than the national drop of about 6%.

“It’s more difficult to staff a rural nursing home,” Chidambaram said. “Labor pools are smaller, and it’s hard to get people to take lower-paid or part-time jobs if they have to travel long distances.”

Bed shortages are also creating bottlenecks at hospitals. Where nursing home capacity declined, Grabowski’s team found, patients stayed in hospitals longer because they couldn’t locate posthospital care. They often had to travel farther to find facilities. “It gums up the entire system,” Grabowski said.

On two fronts, Trump administration policies could make matters worse, experts said. Revoking legal status for certain immigrant groups .

So far, “we’re not seeing significant impact across the country,” Porter said. But the effects are being felt in specific locations, including Florida, New York, and Massachusetts, he confirmed. With further revocations and deportations, “a lot fewer older adults are going to have caregivers,” Grabowski said.

The administration’s more than $900 billion in cuts to Medicaid over a decade are also expected to exact a toll. As states grapple with reduced funding, analysts expect home and community services to take a greater initial hit than institutional care. But that could increase pressure on nursing homes if patients who lose home care turn to institutions instead.

Less of these services “means more nursing home entry,” Grabowski said.

As policy ideas circulate — with calls for better data tracking, special visas for immigrant health workers, and targeted grants for nursing homes serving high-cost populations — researchers, advocates, and families are waiting to see what unfolds.

“So much of this is speculative,” Chidambaram said. “We don’t know what states will decide. We don’t know how the market will react. We’re in new territory here.”

The New Old Age is produced through a partnership with .

This article first appeared on ³Ô¹Ï²»´òìÈ and is republished here under a .

On a weekday morning in a quiet Boston neighborhood, a kitchen bustled with activity. Volunteers sliced chicken breasts, stuffed bell peppers, filled trays, and carefully labeled each item. It was part of an experiment to offer nutritious and medically tailored meals to Medicaid patients who are unable to shop for groceries and cook for themselves.

“Once I started to eat these meals that were geared toward my illness, I built up my muscle mass again, built up my strength, built up my confidence in myself,” said Vanessa Georges, who is in remission from throat cancer and said she would struggle to consume enough calories without the deliveries. “These meals have given me a second chance.”

Georges said she noticed another benefit from the meals: She spends less time at the doctor’s office.

Researchers have found evidence backing her observation. About 1,900 Massachusetts residents who, like Georges, received medically tailored meals for at least three months needed less medical care, according to published in the journal Nature Medicine. They had 20% fewer emergency department visits and 31% fewer hospitalizations than similar patients who did not receive meals.

“It actually saves the healthcare system money,” said , a cardiologist and professor at Tufts University who led the study. “That’s a really big deal, because most things in healthcare don’t.”

The research from Massachusetts that medically tailored meals could save states money — in addition to improving health. Yet such programs could land on the chopping block as states look to tighten spending under Trump administration budget cuts, even as federal officials argue that food is a critical component of health.

Medicaid Budget Cuts Loom

The 2025 law known as the One Big Beautiful Bill Act slashed projected Medicaid funding by more than $900 billion. Many Republicans who backed the bill believe federal health spending is too high and riddled with fraud. Sen. John Kennedy, a Louisiana Republican, for example, has accused California of “outrageous fraud” for using Medicaid dollars to fund housing and nutrition programs.

, a policy analyst at KFF, said states will have to make tough choices in the next few years as they figure out how to fill funding gaps. “If states are not able to offset the loss of federal funds with new taxes or reductions in other state spending, they may have to make program cuts,” she said. (KFF is a health information nonprofit that includes ³Ô¹Ï²»´òìÈ.)

Thirteen states have received federal waivers to use Medicaid dollars to pay for meals — part of an approach known as “food is medicine.” Three other programs are awaiting federal approval.

President Donald Trump’s support for social services has wavered. While the first Trump administration allowed states to pursue medically tailored meals and other social supports, the second Trump administration for Medicaid initiatives that address social needs. It hasn’t detailed a new policy. Administration officials have warned that they will be more focused on the budget impacts of such initiatives.

“They signaled they’re going to be a lot more skeptical,” said , an assistant professor at the University of Massachusetts Chan Medical School who studies nutrition programs and helped lead the Massachusetts study. “Instead of using a broad-based approach nationwide, they’re going to make decisions on a state-by-state basis.”

At the same time, health leaders in Trump’s administration have made nutrition a major focus, including by promoting . Robert F. Kennedy Jr., who leads the Department of Health and Human Services, and Mehmet Oz, administrator of the Centers for Medicare & Medicaid Services, have to serve healthier foods to boost patient outcomes.

The healthcare system is often willing to pay for surgeries, Oz said in a social media video in June, “but not always willing to pay for the nutrition that might help prevent those outcomes in the first place. That’s bothered me my whole career.” He added that the agency is , including medically tailored meals, to prevent illness and hospitalization. CMS officials did not respond to several emailed requests for comment for this article.

, who studies social determinants of health at Harvard Law School’s Center for Health Law and Policy Innovation, said the lack of federal guidance is stirring uncertainty for states that want to pursue nutrition programs in Medicaid. “We’re still waiting to see that big step forward around ‘food is medicine’ interventions,” she said. “We need to see that step forward to resolve some of the uncertainty.”

Lawmakers have had a hard time engaging administration officials on medically tailored meals, said U.S. Rep. Jim McGovern, a Massachusetts Democrat who sponsored a bill that would pilot meal deliveries for some . The legislation has yet to come up for a vote.

“I had thought, based on some of his rhetoric before he entered the Trump administration, that RFK Jr. would be a natural ally on this,” McGovern said. “But we can’t seem to get his attention.”

The Costs of Poor Nutrition

Some companies have been accused of for meals that were neither healthy nor nutritious, raising concerns about lax regulation of these programs.

But at in Boston, the food is prepared with specific attention to sugar, salt, fat, vitamins, and minerals and is based on a person’s health needs, said , chief executive of the nonprofit. Many recipients require food that is mild or low in fiber, for example.

“What we’re able to do is to work with your healthcare provider to understand your health realities — what your diagnoses are, what your medications are, side effects, food allergies, cultural norms — and then prescribe a diet for you that is scratch-made,” Waters said.

The Massachusetts researchers found that the meals — at a cost of $125 per person per week — essentially paid for themselves. Patients with heart disease used about $10,000 less in healthcare services over six months, and patients with kidney disease used $12,000 less in healthcare. There were also savings for people with diabetes, depression, and anxiety.

“Those are pretty big numbers when you think of how expensive those diseases can be and the prevalence in the population,” Waters said.

Nationally, , 10 million Americans would benefit from medically tailored meals, though only a small fraction are enrolled.

“Poor nutrition is the top cause of poor health in this country. It’s the top cause of preventable healthcare spending,” said Mozaffarian, director of the Food is Medicine Institute at Tufts. He has estimated that medically tailored meals could help patients avoid 1.6 million hospitalizations and in healthcare costs each year.

A Weekly Delivery That Makes a Difference

Steve Honyotski receives 10 meals at his Boston home each week, cooked fresh and delivered cold or flash-frozen. They’re ready to eat after just a couple of minutes in the microwave.

“The carrot ginger soup is my favorite,” Honyotski said.

Honyotski, 71, lives with several chronic conditions, including diabetes, obesity, and high blood pressure. He said he’s noticed improvements in his health since he started eating medically tailored meals. He needs less insulin to control his diabetes, and he’s lost enough weight to delay a knee replacement surgery.

For now, those meals will keep coming. And Massachusetts’ Medicaid director, Ryan Schwarz, said the state will seek federal approval to continue medically tailored meals in the coming years. “We feel very strongly committed to continuing these services,” he said.

In North Carolina, researchers found that food and housing supports lowered Medicaid spending over time. Yet even with federal approval for medically tailored meals, and evidence that the meals — along with housing and transportation support — were helping people, North Carolina state lawmakers suspended the services in 2025 over budget worries. After budget deliberations this summer, state legislators changed course and decided to the program.

“To me, that’s a signal of what might occur in other states as these Medicaid cuts hit,” said Hager, the UMass researcher. “Even though they have the authority to run these programs, it might be a lot harder for the states to actually implement them.”

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When Josh Fleig, Louisiana’s chief innovation officer, learned his state had set aside $20 million a year, for five years, to invest in startup rural health companies, his reaction was not surprising: “Wow!”

In rural America, where people are often reported to be sicker with poor access to healthcare, the cash influx is a relief. In the economic development space where Fleig operates, it’s an opportunity.

“Look, that’s a lot of money for what we do,” said Fleig, whose state-funded economic development office invests in corporate launches, ranging from software startups to shipbuilders.

Louisiana and a handful of other states set aside money from their share of the $50 billion federal Rural Health Transformation Program to quickly invest in new technologies, mirroring private industry moves. Lawmakers added the rural health program to offset more than $900 billion in reduced Medicaid spending expected over 10 years from Republicans’ sweeping 2025 tax and spending law.

But rather than filling the budget hole, the rural program’s assignment is to find new approaches for revitalizing rural communities where doctors are in short supply and hospitals have been downsizing and closing for decades. The federal government doled out the first-year rural health program awards to states this year, with pots ranging from $147 million in New Jersey to $281 million in Texas.

Modernizing technology infrastructure is a key pillar of the federal rural health program, and the catalyst money epitomizes the administration’s strategy to move fast and experiment with untested technology — much like the “move fast and break things” mantra during the heyday of Silicon Valley.

Instead of breaking things, though, the goal is to “move fast, fast-fail, innovate quickly, and move to sustainability,” said Aaron Bujnowski, a managing director with the healthcare industry group at the consultancy Alvarez & Marsal. “This is a transformation that is still meant to serve the people.”

Rigorous Rules and Tight Deadlines

Beyond Louisiana, Timothy Foster, a spokesperson for the Centers for Medicare & Medicaid Services, confirmed that Delaware, Georgia, Massachusetts, Nebraska, South Carolina, Virginia, and West Virginia are also creating rural health tech catalyst funds.

Every year, states must compete for rural funding in the five-year federal program. Federal regulators will take money away from states that do not meet the goals promised in their applications, including whether they designated money to companies for tech innovations.

CMS, which is overseeing the program, released a seven-step for states to follow when creating the tech catalyst operations. No more than 10% of each state’s award can be spent on a rural tech catalyst fund.

States’ initial annual progress reports for the rural fund were due at the end of August. CMS has declined to publicly post those reports; it plans to publish an annual report on state progress. States must show that first-year funds will be obligated — but not necessarily spent — by Oct. 30, according to the CMS guidance document.

Daniel X. O’Neil, a technology consultant who advocates for open data and open government, created a and parsed the original state applications to find dozens that mention catalyst awards and technology funds.

O’Neil said he is “looking forward to the clawbacks and the craziness of October because, you know, that’s serious stuff.”

For the rural health catalyst funds, CMS requires states to submit the list of finalists “at least 15 business days” before announcing winners, along with “sufficient information” for the agency to “assess each proposed project,” according to the guidance document.

The document outlines intellectual property and federal rights but does not provide guidance or standards for patient rights or protections. CMS spokesperson Foster stated in an email that the technology investments must comply with federal “privacy, security, interoperability, and patient safety” requirements.

Protecting Patients

Maya Sandalow, director of the health program at the Bipartisan Policy Center and one of the leading analysts watching the rural fund, said the catalyst funds are “public dollars” and has called for more transparency in the overall rural health program. The center is a nonprofit think tank in Washington, D.C.

Accurate and timely reporting must be done to ensure “the necessary guardrails are in place” to protect patients, she said, adding that the innovation needs to be “tested in a way that’s safe for the patients that they are going to be used on.”

To apply, startups must be less than 10 years old and have raised less than $50 million in early funding. Companies that win a portion of state catalyst funds must meet predetermined milestones before being paid — and federal officials will make “targeted reviews as needed,” according to the guidance document.

Louisiana officials announced the state’s tech catalyst fund with an event in rural Natchitoches, known as the filming location of the 1989 film Steel Magnolias. The fund quickly drew more than 200 companies competing for between $250,000 and $3 million in seed money.

Tiny startup Greens Health was invited to the event. The 2-year-old company analyzes Medicare claims to identify patients with chronic diseases, such as diabetes, and works with local home health nurses and senior facilities to improve care.

“We’ve been looking for a way to launch in Louisiana,” said Kehlin Swain, co-founder and chief executive of Greens Health. The company serves about 100 patients across Texas, Alabama, and Florida and hopes to get a $250,000 investment from Louisiana.

Louisiana’s Fleig said his state is “at a really interesting turning point.” The state secured $208.4 million for the first year of the rural health program and quickly created its catalyst fund using the state’s already established innovation department.

At the same time, nearly 1.1 million people live in Louisiana’s rural parishes and the state ranks as the “least healthy” in the nation, according to its own application. State rates of diabetes, obesity, and cardiovascular disease are among the highest in the nation.

Fleig believes Louisiana is an ideal place to test technology solutions. So, while Silicon Valley has “not needed much of what Louisiana has had to offer” for much of its existence, it does now, he said.

Caret Health is one of those companies. Co-founders Riya Pulicharam, who is a physician-researcher, and Kevin Zhao, an engineer, met in Silicon Valley. Together, they created a technology platform that identifies patients who need help getting to their appointments, having scans done, or picking up prescriptions. That technology flags a human, who then contacts the patient with a call or text.

Zhao said Caret had successful pilots at large health systems, but those places also had other vendors and “it was a pretty big uphill battle” to get in and scale. Then, in 2024, the company began paying attention to rural places.

“There wasn’t a lot of existing infrastructure. And that was really good for us because we were able to come in very quickly,” Zhao said. “A lot of the hospitals really needed this kind of service.”

Fast-forward to 2026: Caret Health is about 4 years old and has contracted with about 60 hospitals in 16 states. Pulicharam and Zhao hope to win $3 million to expand into Louisiana.

Louisiana’s Fleig said the state will take an equity stake in each company it invests in. “The dream” is that selected startup companies will also help the state make money to reinvest. If some companies fail — or fail fast — that’s to be expected, but the state should still make money because of “the law of averages,” he said.

“If we are good, we’ll make more money than we spent,” Fleig said. “Either way, it’s going to go back into improving healthcare outcomes.”

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If the state Office of Health Care Affordability adopts the fines next week, hospitals, medical groups, insurers, and others could face penalties that amount to as much as 125% of the total they spend above the state’s annual growth targets.

The penalty proposal comes after healthcare entities in California were asked to limit growth by 3.5% last year and ramp down to 3% by 2029. Seven hospitals that state officials consider particularly expensive face even smaller growth targets: 1.8% in 2026, dropping to 1.6% by 2029.

Consumer advocates argue that state financial deterrents are critical to bring relief to millions of Californians struggling with high insurance premiums and out-of-pocket expenses. Hospitals accounted for in U.S. health spending from 2022 to 2024, compared with 11% from retail prescription drugs. But adding teeth to those targets sets up a fight with the powerful hospital industry, which has a challenging the spending limits as unreasonable. Hospitals warned that they will cut back on vital services, including in emergency rooms, obstetrics, and behavioral health.

Healthcare industry representatives said the state affordability office hasn’t accounted for year-to-year volatility or other factors beyond the industry’s control, such as rising minimum wages, state earthquake retrofit requirements, and expensive new drugs.

“They’re building the plane while flying it,” said Ben Johnson, group vice president for financial policy at the California Hospital Association. “We know improvements in affordability are needed, but we have serious questions about how and about what the unintended consequences could be under OHCA’s rather stringent approaches.”

When calculating penalties, California regulators would consider various factors, including a healthcare entity’s financial situation, its market impact, and the gravity and number of offenses, according to a in June. And entities would first be given opportunities to implement performance improvement plans to bring their spending into line before penalties are imposed. For those that don’t comply, the board is considering penalties of $10,000 a day or a flat $500,000.

The penalties, which the affordability office’s eight-member board is required by to adopt, are slated for discussion, and a potential vote, at the board’s . The soonest healthcare providers would be subject to penalties is 2028, because it’s expected it will take two years to collect and publicly report spending data to measure against the 2026 targets. The state is still collecting data on how entities performed against the 2025 targets, which aren’t enforceable, according to Andrew DiLuccia, a spokesperson for the California Department of Health Care Access and Information.

States Set Targets

California is one of at least eight states that have set spending targets as part of an expanding effort to curb soaring healthcare spending across the nation. Connecticut, Massachusetts, Oregon, and Rhode Island have also authorized the use of some type of financial penalty. The specifics of each vary widely, although so far no state has applied them.

A by the California Health Care Foundation found that 4 out of 10 state residents said they had medical debt, and 6 in 10 reported that they or a family member had skipped or delayed medical care in the previous 12 months because of cost. Nationwide, about say it is difficult to afford healthcare costs.

After Rosalyn Book got stiches on her chin, the elementary school teacher received a $15,000 ER bill from a local hospital, despite having insurance. Many teachers in her district leave because they can’t afford the cost of healthcare and insurance premiums, she said.

“The healthcare charges are just insanity, and what we get as patients for the care, it’s not the best either,” said Book, president of the Monterey Bay Teachers Association. “If you’re a working, regular individual in terms of how much you make, the cost of living and especially the healthcare is just not doable.”

Meanwhile, hospitals are warning there’s a risk of more closures. According to Yale University’s , 17 hospitals have closed in the state since 2016, compared with only six openings.

Hospitals and other healthcare providers have said the proposed multimillion-dollar penalties are too steep and could destabilize their operations at a time when they’re facing funding challenges, including massive federal cuts to Medicaid, the end of enhanced federal subsidies for Affordable Care Act plans, and a sharp rise in uninsured patients. The One Big Beautiful Bill Act, passed by congressional Republicans and signed by President Donald Trump last summer, is expected to reduce federal Medicaid spending by more than — including by in California — and increase the rolls of the uninsured in the U.S. by over a decade.

Johnson said hospitals raise prices on commercial payers to offset the expense of treating uninsured patients, as well as patients on Medicaid and Medicare, which can reimburse care providers at rates that fall short of treatment costs.

In addition, said Anete Millers, vice president of legal and regulatory affairs at the California Association of Health Plans, tax increases on managed-care plans recently to offset federal Medicaid cuts will force plans to increase their prices for consumers.

“Some spending pressures originate outside of the control of health plans and are the result of public policy decisions rather than underlying changes in healthcare utilization or efficiency,” she told the affordability office’s .

Kristof Stremikis, the director of market analysis and insight at the nonprofit California Health Care Foundation, acknowledged that external forces can drive costs but said that plenty of unnecessary spending is within the healthcare system’s control, such as administrative waste and duplicative tests and procedures. of U.S. healthcare spending is considered wasteful, according to .

Elizabeth Mitchell, a former Office of Health Care Affordability board member whose term ended in May, agreed.

“Every business has external challenges,” said Mitchell, who is now president and CEO of Purchaser Business Group on Health, a nonprofit coalition representing large employers. “The hospital industry has not taken accountability to actually manage costs. I have heard those excuses for decades, and at some point, they have to make changes.”

First Step To Bring Down Costs

of five states with cost growth benchmarks, published in June, found that some have succeeded in modestly slowing healthcare spending, particularly those with enforcement mechanisms. However, spending growth in most states has still set. 

Jeremy Vandehey, a consultant with the Peterson-Milbank Program for Sustainable Health Care Costs, said setting benchmarks and collecting data to analyze which entities meet them is only a first step. Armed with information about what and who is driving up costs, states are more empowered to take additional action, such as imposing penalties or regulating prices, to bring down costs, he said.

“I don’t think anybody in any state is declaring victory on healthcare costs, but I wouldn’t say that that means the programs are a failure,” Vandehey said. “In all of these states, there’s much more robust conversations happening about, OK, we haven’t solved our cost crisis, so we need additional action.”

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“I’ve seen nurses get shoved, pushed, scratched. The biggest one is bitten,” said Dhooghe, who works at in Grand Blanc, Michigan.

The in healthcare has in states such as , , , , and , where Dhooghe and many of her co-workers have been on the picket line since Labor Day last year.

“People will question me and be like, ‘Why are you still working in a place if you’re treated like this?’” said Dhooghe, who gets by on strike benefits and working extra shifts at another hospital. The problem, she said, is that other hospitals aren’t any better. “It’s the same everywhere I go.”

In a statement, spokesperson Dana Jay acknowledged violence against healthcare workers is a “national epidemic” and said the health system’s efforts to address the problem include metal detectors, armed security officers trained to make “misdemeanor arrests,” and de-escalation training.

“We have zero tolerance for violence of any kind,” said Jay, asserting the strike is not about safety but is instead “simply an economic strike.”

Nationwide, hospital workers are seven times as likely to be injured on the job due to violent acts as members of the general working population, according to the available from the Bureau of Labor Statistics. The outcry over workplace violence in healthcare is pitting workers’ demands for better compensation and staffing against hospital operators pressured to cut costs.

‘A Powder Keg’

Violent outbursts are so common that they’ve been dramatized on the popular medical TV series . “Emergency rooms right now are like a powder keg,” said Rachel Odes, an assistant professor at the University of Wisconsin-Madison School of Nursing.

In hospitals, a combative or violent patient is known as a “.” Outbursts can be spontaneous and unpredictable, making some almost impossible to prevent. But research shows the increases when hospitals are understaffed or employees are insufficiently trained or experienced.

Mental health worker Andrew Kimball-Mirzaie said he got hurt in February 2024 at Butler Hospital in Providence, Rhode Island.

He’d been working at the private psychiatric hospital for about six weeks and said he hadn’t yet worked in the ER. He said he was sent there to “monitor” a man in his 20s who was waiting for an inpatient bed.

The patient was alone in a back room watching a Knicks basketball game on TV, he recalled. Kimball-Mirzaie said he got the patient a drink and a snack. They were watching the game when, suddenly, he said, the patient stood up and punched him in the face. He said the assault left him with a concussion and broken nose. His injuries were documented in the hospital’s.

“I understand that there is an inherent danger with the job,” Kimball-Mirzaie said. He doesn’t blame the patient, who was very ill at the time. “We should have had at least another staff member with us,” he said, “and I should have been adequately trained on the unit.”

The attack emboldened Kimball-Mirzaie to join some 700 other unionized Butler workers last spring and summer in a months-long strike, which forced the hospital to close . Service Employees International Union 1199 New England declared the strike a win.

Employees received wage increases that union leaders said would enable the hospital to attract and retain more staff. The hospital also agreed to provide financial support for workers violently injured on the job. And the hospital and union agreed to jointly fund a “time bank” to supplement workers’ compensation for injured workers who need more time to recover.

But five months later, a nurse supervisor at Butler had to call 911 because an unarmed patient in the hospital’s ER was assaulting staff. According to the police report, by the time police arrested the patient, he’d injured two nurses, a security guard, and a police officer.

“Butler recognizes the importance of being proactive in protecting those who provide care,” Mary Marran, Butler’s president and chief operating officer, said in a statement. She added that hospital leadership meets regularly with staff to review safety measures and “identify opportunities to strengthen protection for everyone.”

The patient was charged with four counts of , including against the two nurses.

The American Hospital Association has said punishment is key to preventing violence. It has been to make assaulting healthcare workers a that would carry in prison. At least , including and , have enacted similar laws. But workplace safety experts say there is no evidence that such laws have reduced the incidence of violence against healthcare workers.

Calls for ‘Safe Staffing’

Striking healthcare workers around the country often have demanded “safe staffing” instead of stronger punishments for patients who cause injuries.

The against healthcare workers has caught the attention of the , the accreditation organization for more than 80% of U.S. hospitals and health systems. The commission released national performance goals that and require hospitals to be and that staff be trained “to provide safe, quality care.”

But no federal law limits the number of patients in a nurse’s care across healthcare settings, despite the nation’s largest nurses union, National Nurses United, having pressed for a national standard . Hospitals must “safely staff all units” to enable nurses to “provide the care that patients need before they get agitated or disoriented,” said , lead industrial hygienist for .

Some states have passed their own staffing laws. Only has enacted broad mandatory nurse staffing ratios, which were associated with lower mortality rates and likely higher retention. Oregon enacted a staffing law, . Legislators in and have introduced similar bills, but they have failed to advance to floor votes.

The American Hospital Association opposes mandatory minimum nurse staffing ratios in hospitals, saying they would “remove real-time clinical judgment and flexibility,” , and potentially force some hospitals to turn away patients or delay care, spokesperson Colleen Kincaid said. And she pointed to California, whose for psychiatric hospitals reportedly in at least four counties.

“There are a lot of other things you can do to prevent workplace violence than just increasing staffing levels,” said , who was a deputy assistant secretary of labor for the Occupational Safety and Health Administration during the Obama administration and helped develop OSHA’s for healthcare and social service workers.

Barab said hospitals can, for example, train employees in de-escalation, install metal detectors, or have specially trained security guards on-site so staff don’t have to wait for police to arrive when an incident happens.

, a worker safety and health policy expert at Georgetown University, said the in congressional Republicans’ One Big Beautiful Bill Act will in the next few years.

When funding dries up, she said, “protecting workers is going to be the first thing that gets cut.”

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Carter’s specialty is reeling in grants to support students in the Omaha Nation school district, where she is a finance manager. One paid for the garden that sits next to the district’s campus. Another allowed the school system, in one of Nebraska’s lowest-income counties, to pay students to maintain it.

“They’re out in the sun. They’re watering plants,” she said. “It’s the first time they get a paycheck in their life.”

Carter, 41, is paralyzed from the chest down, an injury she’s lived with since a fall in her early 20s. It didn’t slow her down as she built her accounting career and got a master’s degree in human resource management.

But in November 2023, Carter — who lives in Sioux City, Iowa — got a letter from Iowa’s Department of Health and Human Services. It said that her income was too high for her to stay on Medicaid and that she might lose her benefits in two weeks if she didn’t take action.

States are scrambling to get ready for a new federal requirement to double-check that many people on Medicaid qualify for the benefit, by showing they are working, volunteering, or studying at least 80 hours per month. Politicians’ focus on requiring work has angered many people with disabilities who have Medicaid and say current policies that apply to them have the opposite effect — making them choose between working or receiving benefits.

‘I Have No Options’

When Carter got the letter, she was making $110,000 a year, well above Iowa’s 2023 income limit for working people with disabilities: $36,450 for a household of one.

“I had no time at all to prepare,” she said. “I had a decision to make.”

At the time, Carter got her health coverage through Iowa’s , a buy-in program that allows working disabled Iowans to pay part of their income to the state to maintain access to Medicaid benefits. Forty-seven states offer , but eligibility through limits on income and assets.

For years, disability rights advocates have pushed state legislatures to change the limits, arguing they prevent people like Carter from accepting raises or building savings, for fear of losing crucial medical benefits. Massachusetts, Minnesota, New Jersey, and Rhode Island have eliminated such limits over the past five years.

To keep her Medicaid coverage, Carter would’ve had to find a job paying her far less than she was making. Or she could drop her Medicaid coverage and enroll in the school district’s health plan. But that plan didn’t cover many of the disability-related expenses that Medicaid did.

Carter decided to keep her job and leave the Medicaid buy-in program. In the end, the decision felt like a no-brainer, she said.

“I like getting up and going to work every day, and I really like what I do,” she said. “Why would I throw that away?”

But it’s been hard on her finances. Carter said she now spends about $35,000 a year out-of-pocket for expenses her old plan covered, such as the nurse who visits her three times a week, modifications to her car, and wheelchair repairs.

“I had the motors go out on my wheelchair,” she said. “So that was like $4,000 to fix.”

Over the next year, Carter picked up extra jobs and cashed in some of her retirement savings.

“I want to pay my own way. I don’t mind paying taxes,” she said. She doesn’t want to hide her income, either. “I just want an option,” she said. “I have no options right now.”

A Program Intended To Encourage Work

Congress to create Medicaid buy-in programs in the 1990s, intending to incentivize more people with disabilities to work. Iowa was one of the first states to adopt the program.

According to state data, 11,640 Iowans were participating in the buy-in program as of late January, or 1.7% of all Medicaid recipients in Iowa.

The income caps have inched up since Carter got her letter. , set at 250% of the federal poverty level, is $39,900 for a household of one this year.

The rules also restrict recipients from accumulating too much in assets. The is $12,000 for an individual or $24,000 for a married couple, excluding some assets, such as a primary home or vehicle.

Carlyn Crowe, the public policy manager at the , said the limits can prevent disabled Iowans from reaching their goals. “Work full-time and be able to buy a house, live in the community, buy a car,” she said. “Those limits placed on what they can earn and save are keeping them from doing that.”

Crowe’s organization, which has counterparts in every state, is and advocates for people with disabilities. In Iowa, such advocates have asked legislators to drop the hard limits on income and assets. Instead, they suggest that disabled Iowans pay 6% of their income to buy into the Medicaid program, an approach modeled after a 2024 that created a Medicaid buy-in program with no income and asset limits. (Tennessee is waiting on federal approval before starting its program.)

In recent years, these efforts have built bipartisan support and gained traction. An Iowa House committee unanimously in 2025 to remove the income and asset caps, but the bill died after failing to move forward during this spring’s legislative session.

State legislatures now in Medicaid spending estimated at more than $900 billion over 10 years, as part of the One Big Beautiful Bill Act.

, an associate director of KFF’s Program on Medicaid and the Uninsured, said the specific worry is that buy-in programs, though they’re a small part of the larger Medicaid system, could increase overall Medicaid spending if eligibility changes.

“The premiums charged in buy-in programs are nowhere near close to the expected costs of covering people,” Burns said. (KFF is a health policy research, polling, and news organization that includes ³Ô¹Ï²»´òìÈ.)

Focusing on initial cost increases is myopic, said , the director of disability policy at at Iowa’s Drake University. More workers mean additional income tax revenue for states. It also enables some people with disabilities to earn enough to transition off other government assistance programs, such as the Supplemental Nutrition Assistance Program.

“Three, five, seven years from now, you may be recouping those expenses by having people be able to work their way off,” Van Sant said.

Falling Through the Cracks

Iowa lawmakers tried a more modest adjustment during this year’s legislative session. Instead of removing the income limit entirely, they introduced legislation that would raise the cap to 300% of the federal poverty level and exempt pension accounts and a spouse’s income, among other things, from the asset cap.

In the end, the provision was stripped from a wide-ranging public assistance bill. If it had passed, the new income limit would have been one of the for a buy-in program, according to KFF.

, a former City Council member in Sioux City who was paralyzed from the chest down after a diving accident, told state lawmakers during a hearing in February that the proposal was a step in the right direction, but not enough.

“I fear that we’re going to lose people to other states,” said Watters, who added that he was considering moving to Minnesota, which never had an income cap and eliminated asset caps for its in 2024.

Even if Iowa had raised its income limit, Carter would still have been ineligible.

Carter remains committed to her primary job at the school district. She plans to keep working there and taking on additional jobs, seven days a week, so she can pay for her medical needs and continue helping students.

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If he wanted to learn more about an outbreak of measles or hantavirus, he would pore over the weekly CDC report that came by email. If a patient’s family was traveling to Africa or Asia, he would check the latest CDC vaccine recommendations for overseas travel. And if a family was worried about potential side effects from a shot, he could always send them to the CDC’s website to bolster his argument to get the immunization.

Public trust in the CDC has in the road , but for medical professionals, Snyder said, “the CDC used to be, worldwide, the most trusted source of information pertaining to public health and infectious disease.”

Yet even doctors began losing trust, Snyder said, after Donald Trump was elected president again. Trump quickly tapped longtime anti-vaccine activist Robert F. Kennedy Jr. as his nominee to lead the Department of Health and Human Services, which oversees the CDC.

Within months of his confirmation as secretary, Kennedy had of the CDC’s vaccine advisory board and replaced them with , some of them prominent vaccine skeptics.

“It turned into a completely unreputable source of information,” Snyder said.

This rupture of scientific trust in the CDC has put many pediatricians like Snyder in a bind, as they no longer turn to the country’s preeminent public health agency and instead search for ways to fill the information gap. Some doctors are launching their own vaccine education efforts, sometimes in collaboration with local public health departments.

On Jan. 5, the CDC from the recommended for all children — against the advice of major medical groups like the . The as the agency dropped rotavirus, covid-19, influenza, hepatitis A, hepatitis B, and meningococcal disease from the list. The agency did not respond to a request for comment for this article.

In March, after , a federal judge to revert to the previous guidelines. The administration the judge’s decision.

The back-and-forth “creates a whole bunch of confusion in the public,” Snyder said. “And it’s very confusing even for healthcare providers.”

So he’s trying to be clear to patients about what the evidence shows, even if that means going against the federal government. His practice, Amherst Pediatrics, to say: “The CDC is no longer considered to be a reliable or legitimate source of information.”

“It’s shocking that we have to say that,” Snyder said. Instead, the site directs families to get information from their own doctor, the state of Massachusetts, or nongovernmental medical organizations including the AAP.

In the exam room, Snyder is having more tense conversations with families. He said some parents are explicit that they want to hew to what the CDC recommends. “Even if they don’t say that, we have definitely seen increasing hesitancy and questions,” he said. “All of that interferes with us protecting children.”

On a spring afternoon, several of Snyder’s young patients came into Amherst Pediatrics for routine visits.

“Let’s talk about vaccines,” Snyder said to one mother, Tenzin Dekey, who was there with her 1-year-old. Snyder explained that her son was due for the , which protects against measles, mumps, and rubella, in addition to the chickenpox, hepatitis A, and flu vaccines.

“So that’s four shots, two in each leg,” he said, as he handed Dekey CDC information sheets about the vaccines. She glanced at them and agreed to the shots.

Ironically, the information sheets are stamped with the CDC’s logo — — even though Amherst Pediatrics has explicitly directed patients away from the CDC. Snyder said he hates that disconnect.

“This has been a source of heated discussion,” he said. “How can we be saying, ‘Do not trust the CDC when it comes to vaccines,’ yet here is the information we’re giving our own patients when they’re in the office about vaccines?”

Another mother brought her 14-year-old son for his annual physical. She asked to be identified by only her first name, Melissa, so she could freely discuss her family’s private health issues.

Snyder recommended the , which helps . Although Melissa had refused the HPV vaccine in a previous visit, this time she left the decision up to her son. He agreed to it. But for other vaccines, she wouldn’t budge.

“I’m a hard ‘no’ on the covid,” she told Snyder.

“We could talk about that if you want,” he suggested.

“I don’t need to talk about it,” she replied.

After the appointment, Melissa said she just doesn’t know whom to trust anymore when it comes to vaccine safety. She used to get information from the CDC but no longer does.

“I worry that it’s been politicized a lot, and I don’t like politics,” she said. “Now I prefer to hear things from people, healthcare professionals.”

Such distrust and confusion inspired Snyder to join an independent vaccine information campaign, along with other pediatric practices and health departments in the Connecticut River Valley of Western Massachusetts.

The campaign’s website, which is promoted in Snyder’s waiting room, is called . It sidesteps the CDC and highlights advice from local doctors and national medical groups, . Valley Vax bought ads on the sides of buses in Western Massachusetts to promote the site, with the faces and testimonials of local doctors including Snyder.

“We wanted something that felt familiar and appealing and that they might be more likely to trust,” said , director of Amherst’s public health department, who coordinates the Valley Vax effort.

She said the organizers decided not to criticize the CDC outright.

“Some information from the CDC is reasonable. Like they are doing a good job of tracking influenza-like illness rates in the country,” Malin said. “It’s important not to discount an organization completely.”

Still, she said it’s the first time she’s had to contradict health information from the CDC. “That’s not a comfortable place to be in at all,” she said.

Other health leaders are also banding together to get out evidence-based information. At the state level, California, ±á²¹·É²¹¾±â€˜i, Oregon, and Washington — frustrated with the CDC — operate the to “ensure the public has access to credible information.” And governors of 14 states and Guam set up the in response to declining trust in federal health agencies.

Locally, some public health departments are partnering with community leaders to reach people who have stopped listening to government institutions but “do have strong connections within their faith community or do have strong connections within their neighborhood,” said , a spokesperson for the .

Like Amherst, many local health departments now direct people to professional medical organizations instead of the CDC, Casalotti said, because advice from those groups may change slightly as the science evolves, but it’s unlikely to change with each lawsuit against the government.

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