Category: Rehab News

Tim Winard knew he needed to buy health insurance when he left his management job in manufacturing to launch his own business.

It was the first time he had shopped around for coverage, searching for a plan that would cover him and his wife, who was also between jobs at the time.

“We were so nervous about not being on a company-provided plan,” Winard said.

After speaking with an insurance agent, he decided against enrolling in an Affordable Care Act plan because he was concerned about the potential cost. Instead, he chose a short-term policy, good for six months.

Six months later, Winard was still working on starting his business, so he signed up for another short-term policy with a different insurer that cost about $500 a month.

When he needed a colonoscopy, Winard, 57, called his insurance company. He said a representative told him to go to any facility he wanted for the procedure.

Early last year, he had the colonoscopy at a hospital in Elmhurst, Illinois, not far from his home in Addison.

The procedure went well, and Winard went home right afterward.

Then the bill came.

The Medical Procedure

Periodic colon cancer screening is recommended for people at average risk starting at age 45 and continuing until age 75, according to the U.S. Preventive Services Task Force. In addition to those for preventive purposes, doctors may order colonoscopies to diagnose existing concerns, as was the case for Winard.

There are several ways to screen, including noninvasive stool tests. A colonoscopy allows clinicians to examine and remove any polyps, which are then tested to see whether they are precancerous or malignant.

The Final Bill

$10,723.19, including $1,436 for the anesthesia and $1,039 for the recovery room. After an insurance discount, his plan paid $817.47. Winard was left owing $7,226.71.

The Billing Problem: A Short-Term Plan, With Coverage Caps and Gaps

Short-term, limited-duration insurance policies do not have to follow rules established under the ACA because they are intended to be only temporary coverage.

As Winard experienced, benefits within the plans can vary, with some setting specific dollar caps on certain types of medical care — sometimes far below what it costs. What’s covered can be hard to parse, and the insurer generally gets the last word on interpreting its rules.

While some short-term policies look like comprehensive major medical policies, all come with significant caveats. Most have limits that people accustomed to work-based or comprehensive ACA plans may find surprising.

All short-term insurance carriers, for example, screen applicants for health conditions and can reject them because of health problems or exclude those conditions. Many do not include drug coverage or maternity care.

The fact that short-term plans can cover fewer services, conditions, and patients is why they are generally less expensive than an unsubsidized ACA plan.

“The general trade-off is lower premiums versus what the plans actually cover,” said Cynthia Cox, vice president and director of the program on the ACA at KFF, a health information nonprofit that includes KFF Health News, the publisher of California Healthline. “But the reason short-term plans are priced lower than a more comprehensive ACA plan is that they can deny people with preexisting conditions and don’t have to cover a lot of essential health benefits.”

Stunned that he owed more than $7,000 for his colonoscopy, Winard contacted his insurance company, Companion Life Insurance of Columbia, South Carolina.

An insurance representative told him in an email that it classified the procedure and all its costs, including the anesthesia, under his policy’s “outpatient surgery facility” benefit.

That benefit, the email said, capped insurance payment “within that facility” to a maximum of $1,000 per day.

That definition surprised Winard, who said he read his policy to mean that there was a cap on what could be charged for the facility itself — not for all the care he received there.

“I interpreted it to be a facility like a recovery room or surgery room,” he said. “They defined it to include any services at an outpatient facility.”

His plan says it covers colon cancer screening at 80% after patients meet their deductible. It also covers 80% of the cost of drugs provided in an outpatient setting.

Winard, who had met his deductible, said he expected he would pay only 20% toward the cost of his colonoscopy. But he also wondered why the screening, performed at Endeavor Health Elmhurst Hospital, was categorized by the insurer as a procedure at an “outpatient” facility.

According to the email Winard received from his insurer, his policy’s $1,000-a-day limit applies to “treatment or services in a state-approved freestanding ambulatory surgery center that is not part of a hospital, or a hospital outpatient surgery facility.”

Elmhurst Health spokesperson Allie Burke said that the hospital has an attached building where same-day outpatient procedures like colonoscopies are performed.

Short-term plans have been sold for decades. But in recent years, they’ve become a political football.

Out of concern that people would choose them over more comprehensive ACA insurance, President Barack Obama’s administration limited short-term plans’ terms to three months. Those rules were lifted in President Donald Trump’s first term, allowing the plans to again be sold as 364-day policies.

President Joe Biden, calling such plans “junk insurance,” restricted the policies to four months — a change that took effect one month after Winard’s procedure. Trump is expected to reverse Biden’s reversal and again make them available for longer durations.

The Resolution

In December, Winard hired an advocate, Linda Michelson, to help him parse his bill. They wrote to the hospital, offering to pay $4,000 if it would settle the entire bill — an amount Michelson said is about four times what Medicare would pay for a colonoscopy. Winard said the hospital declined the offer.

Spencer Walrath, another Elmhurst spokesperson, wrote in an email to KFF Health News that the hospital’s prices “reflect the value of the services we deliver.”

Companion Life did not respond to requests for comment. Scott Wood, who identified himself as a program manager and co-founder of Pivot Health, which markets Companion Life and other insurance plans, said in an interview that there was room for interpretation in the billing and that he had asked Companion Life to take another look.

Shortly after Wood’s comment to KFF Health News, Winard said he was contacted by his insurer. A representative told him that, upon reconsideration, the bill had been adjusted — although he was given no specific explanation as to why.

His new bill showed he owed only $770.

The Takeaway

Short-term plans can be appealing for some people because of the relatively low cost of their premiums, but consumers should read all the plan documents carefully before enrolling. Understand that the plans often won’t cover a full range of benefits, and check to see which services are covered and which are excluded. Check whether a policy includes per-day or per-policy-period dollar caps on coverage or other payout limits.

The federal government offers subsidies based on household income for ACA plans, which can make them comparable in cost to cheaper, short-term plans — but with a wider range of benefits.

In hindsight, Winard said he had not understood the difference between ACA policies and short-term plans.

His advice? Don’t rely solely on marketing materials, and always get a cost estimate, preferably in writing, before a nonemergency procedure like a colonoscopy.

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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Mari Villar was slammed by a car that jumped the curb, breaking her legs and collapsing a lung. Amy Paulo was in pain from a femur surgery that wasn’t healing properly. Katie Kriegshauser suffered organ failure during pregnancy, weakening her so much that she couldn’t lift her baby daughter.

All went to physical therapy, but their health insurers stopped paying before any could walk without assistance. Paulo spent nearly $1,500 out of her own pocket for more sessions.

Millions of Americans rely on physical and occupational therapists to regain strength and motor skills after operations, diseases, and injuries. But recoveries are routinely stymied by a widespread constraint in health insurance policies: rigid caps on therapy sessions.

Insurers frequently limit such sessions to as few as 20 a year, a KFF Health News examination finds, even for people with severe damage such as spinal cord injuries and strokes, who may need months of treatment, multiple times a week. Patients can face a bind: Without therapy, they can’t return to work, but without working, they can’t afford the therapy.

Paulo said she pressed her insurer for more sessions, to no avail. “I said, ‘I’m in pain. I need the services. Is there anything I can do?’” she recalled. “They said, no, they can’t override the hard limit for the plan.”

A typical physical therapy session for a privately insured patient to improve daily functioning costs $192 on average, according to the Health Care Cost Institute. Most run from a half hour to an hour.

Insurers say annual visit limits help keep down costs, and therefore premiums, and are intended to prevent therapists from continuing treatment when patients are no longer improving. They say most injuries can be addressed in a dozen or fewer sessions and that people and employers who bought insurance could have purchased policies with better therapy benefits if it was a priority.

Atul Patel, a physiatrist in Overland Park, Kansas, and the treasurer of the American Academy of Physical Medicine and Rehabilitation, said insurers’ desire to prevent gratuitous therapy is understandable but has “gone too far.”

“Most patients get way less therapy than they would actually benefit from,” he said.

Hard caps on rehab endure in part because of an omission in the Affordable Care Act. While that law required insurers to cover rehab and barred them from setting spending restrictions on a patient’s medical care, it did not prohibit establishing a maximum number of therapy sessions a year.

More than 29,000 ACA health plans — nearly 4 in 5 — limit the annual number of physical therapy sessions, according to a KFF Health News analysis of plans sold last year to individuals and small businesses. Caps generally ranged from 20 to 60 visits; the most common was 20 a year.

Health plans provided by employers often have limits of 20 or 30 sessions as well, said Cori Uccello, senior health fellow at the American Academy of Actuaries.

“It’s the gross reality in America right now,” said Sam Porritt, chairman of the Falling Forward Foundation, a Kansas-based philanthropy that has paid for therapy for about 200 patients who exhausted their insurance over the past decade. “No one knows about this except people in the industry. You find out about it when tragedy hits.”

Even in plans with no caps, patients are not guaranteed unlimited treatment. Therapists say insurers repeatedly require prior authorization, demanding a new request every two or three visits. Insurers frequently deny additional sessions if they believe there hasn’t been improvement.

“We’re seeing a lot of arbitrary denials just to see if you’ll appeal,” said Gwen Simons, a lawyer in Scarborough, Maine, who represents therapy practices. “That’s the point where the therapist throws up their hands.”

‘Couldn’t Pick Her Up’

Katie Kriegshauser, a 37-year-old psychologist from Kansas City, Missouri, developed pregnancy complications that shut down her liver, pancreas, and kidneys in November 2023. After giving birth to her daughter, she spent more than three months in a hospital, undergoing multiple surgeries and losing more than 40 pounds so quickly that doctors suspected her nerves became damaged from compression. Her neurologist told her he doubted she would ever walk again.

Kriegshauser’s UnitedHealthcare insurance plan allowed 30 visits at Ability KC, a rehabilitation clinic in Kansas City. She burned through them in six weeks in 2024 because she needed both physical therapy, to regain her mobility, and occupational therapy, for daily tasks such as getting dressed.

“At that point I was starting to use the walker from being completely in the wheelchair,” Kriegshauser recalled. She said she wasn’t strong enough to change her daughter’s diaper. “I couldn’t pick her up out of her crib or put her down to sleep,” she said.

The Falling Forward Foundation paid for additional sessions that enabled her to walk independently and hold her daughter in her arms. “A huge amount of progress happened in that period after my insurance ran out,” she said.

In an unsigned statement, UnitedHealthcare said it covered the services that were included in Kriegshauser’s health plan. The company declined to permit an official to discuss its policies on the record because of security concerns.

A Shattered Teenager

Patients who need therapy near the start of a health plan’s year are more likely to run out of visits. Mari Villar was 15 and had been walking with high school friends to get a bite to eat in May 2023 when a car leaped over a curb and smashed into her before the driver sped away.

The accident broke both her legs, lacerated her liver, damaged her colon, severed an artery in her right leg, and collapsed her lung. She has undergone 11 operations, including emergency exploratory surgery to stop internal bleeding, four angioplasties, and the installation of screws and plates to hold her leg bones together.

Villar spent nearly a month in Shirley Ryan AbilityLab’s hospital in Chicago. She was discharged after her mother’s insurer, Blue Cross and Blue Shield of Illinois, denied her physician’s request for five more days, making her more reliant on outpatient therapy, according to records shared by her mother, Megan Bracamontes.

Villar began going to one of Shirley Ryan’s outpatient clinics, but by the end of 2023, she had used up the 30 physical therapy and 30 occupational therapy visits the Blue Cross plan allowed. Because the plan ran from July to June, she had no sessions left for the first half of 2024.

“I couldn’t do much,” Villar said. “I made lots of progress there, but I was still on crutches.”

Dave Van de Walle, a Blue Cross spokesperson, said in an email that the insurer does not comment on individual cases. Razia Hashmi, vice president for clinical affairs at the Blue Cross Blue Shield Association, said in a written statement that patients who have run out of sessions should “explore alternative treatment plans” including home exercises.

Villar received some extra sessions from the Falling Forward Foundation. While her plan year has reset, Villar is postponing most therapy sessions until after her next surgery so she will be less likely to run out again. Bracamontes said her daughter still can’t feel or move her right foot and needs three more operations: one to relieve nerve pain, and two to try to restore mobility in her foot by lengthening her Achilles tendon and transferring a tendon in her left leg into her right.

“Therapy caps are very unfair because everyone’s situation is different,” Villar said. “I really depend on my sessions to get me to a new normalcy. And not having that and going through all these procedures is scary to think about.”

Rationing Therapy

Most people who use all their sessions either stop going or pay out-of-pocket for extra therapy.

Amy Paulo, a 34-year-old Massachusetts woman recovering from two operations on her left leg, maxed out the 40 visits covered by Blue Cross Blue Shield of Massachusetts in 2024, so she spent $1,445 out-of-pocket for 17 therapy sessions.

Paulo needed physical therapy to recover from several surgeries to shorten her left leg to the length of her right leg — the difference a consequence of juvenile arthritis. Her recovery was prolonged, she said, because her femur didn’t heal properly after one of the operations, in which surgeons cut out the middle of her femur and put a rod in its place.

“I went ballistic on Blue Cross many, many times,” said Paulo, who works with developmentally delayed children.”

Amy McHugh, a Blue Cross spokesperson, declined to discuss Paulo’s case. In an email, she said most employers who hire Blue Cross to administer their health benefits choose plans with “our standard” 60-visit limit, which she said is more generous than most insurers offer, but some employers “choose to allow for more or fewer visits per year.”

Paulo said she expects to restrict her therapy sessions to once a week instead of the recommended twice a week because she’ll need more help after an upcoming operation on her leg.

“We had to plan to save my visits for this surgery, as ridiculous as it sounds,” she said.

Medicare Is More Generous

People with commercial insurance plans face more hurdles than those on Medicare, which sets dollar thresholds on therapy each year but allows therapists to continue providing services if they document medical necessity. This year the limits are $2,410 for physical and speech therapy and $2,410 for occupational therapy.

Private Medicare Advantage plans don’t have visit or dollar caps, but they often require prior authorization every few visits. The U.S. Senate Permanent Subcommittee on Investigations found last year that MA plans deny requests for physical and occupational therapy at hospitals and nursing homes at higher rates than they reject other medical services.

Therapists say many commercial plans require prior authorization and mete out approvals parsimoniously. Insurers often make therapists submit detailed notes, sometimes for each session, documenting patients’ treatment plans, goals, and test results showing how well they perform each exercise.

“It’s a battle of getting visits,” said Jackee Ndwaru, an occupational therapist in Jacksonville, Florida. “If you can’t show progress they’re not going to approve.”

An Insurer Overruled

Marjorie Haney’s insurance plan covered 20 therapy sessions a year, but Anthem Blue Cross Blue Shield approved only a few visits at a time for the rotator cuff she tore in a bike accident in Maine. After 13 visits in 2021, Anthem refused to approve more, writing that her medical records “do not show you made progress with specific daily tasks,” according to the denial letter.

Haney, a physical therapist herself, said the decision made no sense because at that stage of her recovery, the therapy was focused on preventing her shoulder from freezing up and gradually expanding its range of motion.

“I went through those visits like they were water,” Haney, now 57, said. “My range was getting better, but functionally I couldn’t use my arm to lift things.”

Haney appealed to Maine’s insurance bureau for an independent review. In its report overturning Anthem’s decision, the bureau’s physician consultant, William Barreto, concluded that Haney had made “substantial improvement” — she no longer needed a shoulder sling and was able to return to work with restrictions. Barreto also noted that nothing in Anthem’s policy required progress with specific daily tasks, which was the basis for Anthem’s refusal.

“Given the member’s substantial restriction in active range of motion and inability to begin strengthening exercises, there is remaining deficit that requires the skills and training of a qualified physical therapist,” the report said.

Anthem said it requires repeated assessments before authorizing additional visits “to ensure the member is receiving the right care for the right period of time based on his or her care needs.” In the statement provided by Stephanie DuBois, an Anthem spokesperson, the insurer said this process “also helps prevent members from using up all their covered treatment benefits too quickly, especially if they don’t end up needing the maximum number of therapy visits.”

In 2023, Maine passed a law banning prior authorization for the first 12 rehab visits, making it one of the few states to curb insurer limitations on physical therapy. The law doesn’t protect residents with plans based in other states or plans from a Maine employer who self-insures.

Haney said after she won her appeal, she spaced out the sessions her plan permitted by going once weekly. “I got another month,” she said, “and I stretched it out to six weeks.”

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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As had been rumored for weeks, Health and Human Services Secretary Robert F. Kennedy Jr. unveiled a plan to reorganize the department. It involves the downsizing of its workforce, which formerly was roughly 80,000 people, by a quarter and consolidating dozens of agencies that were created and authorized by Congress.

Meanwhile, in just the past week, HHS abruptly cut off billions in funding to state and local public health departments, and canceled all research studies into covid-19, as well as diseases that could develop into the next pandemic.

This week’s panelists are Julie Rovner of KFF Health News, Maya Goldman of Axios News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine, and Alice Miranda Ollstein of Politico.

Among the takeaways from this week’s episode:

• As federal health officials reveal the targets of a significant workforce purge and reorganization, the GOP-controlled Congress has been notably quiet about the Trump administration’s intrusions on its constitutional powers. Many of the administration’s attempts to revoke and reorganize federally funded work are underway despite Congress’ previous approval of that funding. And while changes might be warranted, reviewing how the federal government works (or doesn’t) — in the public forums of congressional hearings and floor debate — is part of Congress’ responsibilities.
• The news of a major reorganization at HHS also comes before the Senate finishes confirming its leadership team. New leaders of the National Institutes of Health and the FDA were confirmed just this week; Mehmet Oz, the nominated director of the Centers for Medicare & Medicaid Services, had not yet been confirmed when HHS made its announcement; and President Donald Trump only recently named a replacement nominee to lead the Centers for Disease Control and Prevention, after withdrawing his first pick.
• While changes early in Trump’s second term have targeted the federal government and workforce, the impacts continue to be felt far outside the nation’s capital. Indeed, cuts to jobs and funding touch every congressional district in the nation. They’re also being felt in research areas that the Trump administration claims as priorities, such as chronic disease: The administration said this week it will shutter the office devoted to studying long covid, a chronic disease that continues to undermine millions of Americans’ health.
• Meanwhile, in the states, doctors in Texas report a rise in cases of children with liver damage due to ingesting too much vitamin A — a supplement pushed by Kennedy in response to the measles outbreak. The governor of West Virginia signed a sweeping ban on food dyes and additives. And a woman in Georgia who experienced a miscarriage was arrested in connection with the improper disposal of fetal remains.

Also this week, Rovner interviews KFF senior vice president Larry Levitt about the 15^th anniversary of the signing of the Affordable Care Act and the threats the health law continues to face.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: CNN’s “State Lawmakers Are Looking To Ban Non-Existent ‘Chemtrails.’ It Could Have Real-Life Side Effects,” by Ramishah Maruf and Brandon Miller. 

Alice Miranda Ollstein: The New York Times Wirecutter’s “23andMe Just Filed for Bankruptcy. You Should Delete Your Data Now,” by Max Eddy. 

Maya Goldman: KFF Health News’ “‘I Am Going Through Hell’: Job Loss, Mental Health, and the Fate of Federal Workers,” by Rachana Pradhan and Aneri Pattani. 

Joanne Kenen: The Atlantic’s “America Is Done Pretending About Meat,” by Yasmin Tayag. 

Also mentioned in this week’s podcast:

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This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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In the wooded highlands of northern Arkansas, where small towns have few dentists, water officials who serve more than 20,000 people have for more than a decade openly defied state law by refusing to add fluoride to the drinking water.

For its refusal, the Ozark Mountain Regional Public Water Authority has received hundreds of state fines amounting to about $130,000, which are stuffed in a cardboard box and left unpaid, said Andy Anderson, who is opposed to fluoridation and has led the water system for nearly two decades.

This Ozark region is among hundreds of rural American communities that face a one-two punch to oral health: a dire shortage of dentists and a lack of fluoridated drinking water, which is widely viewed among dentists as one of the most effective tools to prevent tooth decay. But as the anti-fluoride movement builds unprecedented momentum, it may turn out that the Ozarks were not behind the times after all.

“We will eventually win,” Anderson said. “We will be vindicated.”

Fluoride, a naturally occurring mineral, keeps teeth strong when added to drinking water, according to the Centers for Disease Control and Prevention and the American Dental Association. But the anti-fluoride movement has been energized since a government report last summer found a possible link between lower IQ in children and consuming amounts of fluoride that are higher than what is recommended in American drinking water. Dozens of communities have decided to stop fluoridating in recent months, and state officials in Florida and Texas have urged their water systems to do the same. Utah is poised to become the first state to ban it in tap water.

Health and Human Services Secretary Robert F. Kennedy Jr., who has long espoused fringe health theories, has called fluoride an “industrial waste” and “dangerous neurotoxin” and said the Trump administration will recommend it be removed from all public drinking water.

Separately, Republican efforts to extend tax cuts and shrink federal spending may squeeze Medicaid, which could deepen existing shortages of dentists in rural areas where many residents depend on the federal insurance program for whatever dental care they can find.

Dental experts warn that the simultaneous erosion of Medicaid and fluoridation could exacerbate a crisis of rural oral health and reverse decades of progress against tooth decay, particularly for children and those who rarely see a dentist.

“If you have folks with little access to professional care and no access to water fluoridation,” said Steven Levy, a dentist and leading fluoride researcher at the University of Iowa, “then they are missing two of the big pillars of how to keep healthy for a lifetime.”

Many already are.

Overlapping ‘Dental Deserts’ and Fluoride-Free Zones

Nearly 25 million Americans live in areas without enough dentists — more than twice as many as prior estimates by the federal government — according to a recent study from Harvard University that measured U.S. “dental deserts” with more depth and precision than before.

Hawazin Elani, a Harvard dentist and epidemiologist who co-authored the study, found that many shortage areas are rural and poor, and depend heavily on Medicaid. But many dentists do not accept Medicaid because payments can be low, Elani said.

The ADA has estimated that only a third of dentists treat patients on Medicaid.

“I suspect this situation is much worse for Medicaid beneficiaries,” Elani said. “If you have Medicaid and your nearest dentists do not accept it, then you will likely have to go to the third, or fourth, or the fifth.”

The Harvard study identified over 780 counties where more than half of the residents live in a shortage area. Of those counties, at least 230 also have mostly or completely unfluoridated public drinking water, according to a KFF analysis of fluoride data published by the CDC. That means people in these areas who can’t find a dentist also do not get protection for their teeth from their tap water.

The KFF Health News analysis does not cover the entire nation because it does not include private wells and 13 states do not submit fluoride data to the CDC. But among those that do, most counties with a shortage of dentists and unfluoridated water are in the south-central U.S., in a cluster that stretches from Texas to the Florida Panhandle and up into Kansas, Missouri, and Oklahoma.

In the center of that cluster is the Ozark Mountain Regional Public Water Authority, which serves the Arkansas counties of Boone, Marion, Newton, and Searcy. It has refused to add fluoride ever since Arkansas enacted a statewide mandate in 2011. After weekly fines began in 2016, the water system unsuccessfully challenged the fluoride mandate in state court, then lost again on appeal.

Anderson, who has chaired the water system’s board since 2007, said he would like to challenge the fluoride mandate in court again and would argue the case himself if necessary. In a phone interview, Anderson said he believes that fluoride can hamper the brain and body to the point of making people “get fat and lazy.”

“So if you go out in the streets these days, walk down the streets, you’ll see lots of fat people wearing their pajamas out in public,” he said.

Nearby in the tiny, no-stoplight community of Leslie, Arkansas, which gets water from the Ozark system, the only dentist in town operates out of a one-man clinic tucked in the back of an antique store. Hand-painted lettering on the store window advertises a “pretty good dentist.”

James Flanagin, a third-generation dentist who opened this clinic three years ago, said he was drawn to Leslie by the quaint charms and friendly smiles of small-town life. But those same smiles also reveal the unmistakable consequences of refusing to fluoridate, he said.

“There is no doubt that there is more dental decay here than there would otherwise be,” he said. “You are going to have more decay if your water is not fluoridated. That’s just a fact.”

Fluoride Seen as a Great Public Health Achievement

Fluoride was first added to public water in an American city in 1945 and spread to half of the U.S. population by 1980, according to the CDC. Because of “the dramatic decline” in cavities that followed, in 1999 the CDC dubbed fluoridation as one of 10 great public health achievements of the 20th century.

Currently more than 70% of the U.S. population on public water systems get fluoridated water, with a recommended concentration of 0.7 milligrams per liter, or about three drops in a 55-gallon barrel, according to the CDC.

Fluoride is also present in modern toothpaste, mouthwash, dental varnish, and some food and drinks — like raisins, potatoes, oatmeal, coffee, and black tea. But several dental experts said these products do not reliably reach as many low-income families as drinking water, which has an additional benefit over toothpaste of strengthening children’s teeth from within as they grow.

Two recent polls have found that the largest share of Americans support fluoridation, but a sizable minority does not. Polls from Axios/Ipsos and AP-NORC found that 48% and 40% of respondents wanted to keep fluoride in public water supplies, while 29% and 26% supported its removal.

Chelsea Fosse, an expert on oral health policy at the American Academy of Pediatric Dentistry, said she worried that misguided fears of fluoride would cause many people to stop using fluoridated toothpaste and varnish just as Medicaid cuts made it harder to see a dentist.

The combination, she said, could be “devastating.”

“It will be visibly apparent what this does to the prevalence of tooth decay,” Fosse said. “If we get rid of water fluoridation, if we make Medicaid cuts, and if we don’t support providers in locating and serving the highest-need populations, I truly don’t know what we will do.”

Multiple peer-reviewed studies have shown what ending water fluoridation could look like. In the past few years, studies of cities in Alaska and Canada have shown that communities that stopped fluoridation saw significant increases in children’s cavities when compared with similar cities that did not. A 2024 study from Israel reported a “two-fold increase” in dental treatments for kids within five years after the country stopped fluoridating in 2014.

Despite the benefits of fluoridation, it has been fiercely opposed by some since its inception, said Catherine Hayes, a Harvard dental expert who advises the American Dental Association on fluoride and has studied its use for three decades.

Fluoridation was initially smeared as a communist plot against America, Hayes said, and then later fears arose of possible links to cancer, which were refuted through extensive scientific research. In the ’80s, hysteria fueled fears of fluoride causing AIDS, which was “ludicrous,” Hayes said.

More recently, the anti-fluoride movement seized on international research that suggests high levels of fluoride can hinder children’s brain development and has been boosted by high-profile legal and political victories.

Last August, a hotly debated report from the National Institutes of Health’s National Toxicology Program found “with moderate confidence” that exposure to levels of fluoride that are higher than what is present in American drinking water is associated with lower IQ in children. The report was based on an analysis of 74 studies conducted in other countries, most of which were considered “low quality” and involved exposure of at least 1.5 milligrams of fluoride per liter of water — or more than twice the U.S. recommendation — according to the program.

The following month, in a long-simmering lawsuit filed by fluoride opponents, a federal judge in California said the possible link between fluoride and lowered IQ was too risky to ignore, then ordered the federal Environmental Protection Agency to take nonspecified steps to lower that risk. The EPA started to appeal this ruling in the final days of the Biden administration, but the Trump administration could reverse course.

The EPA and Department of Justice declined to comment. The White House and Department of Health and Human Services did not respond to questions about fluoride.

Despite the National Toxicology Program’s report, Hayes said, no association has been shown to date between lowered IQ and the amount of fluoride actually present in most Americans’ water. The court ruling may prompt additional research conducted in the U.S., Hayes said, which she hoped would finally put the campaign against fluoride to rest.

“It’s one of the great mysteries of my career, what sustains it,” Hayes said. “What concerns me is that there’s some belief amongst some members of the public — and some of our policymakers — that there is some truth to this.”

Not all experts were so dismissive of the toxicology program’s report. Bruce Lanphear, a children’s health researcher at Simon Fraser University in British Columbia, published an editorial in January that said the findings should prompt health organizations “to reassess the risks and benefits of fluoride, particularly for pregnant women and infants.”

“The people who are proposing fluoridation need to now prove it’s safe,” Lanphear told NPR in January. “What the study does, or should do, is shift the burden of proof.”

Cities and States Rethink Fluoride

At least 14 states so far this year have considered or are considering bills that would lift fluoride mandates or prohibit fluoride in drinking water altogether. In February, Utah lawmakers passed the nation’s first ban, which Republican Gov. Spencer Cox told ABC4 Utah he intends to sign. And both Florida Surgeon General Joseph Ladapo and Texas Agriculture Commissioner Sid Miller have called for their respective states to end fluoridation.

“I don’t want Big Brother telling me what to do,” Miller told The Dallas Morning News in February. “Government has forced this on us for too long.”

Additionally, dozens of cities and counties have decided to stop fluoridation in the past six months — including at least 16 communities in Florida with a combined population of more than 1.6 million — according to news reports and the Fluoride Action Network, an anti-fluoride group.

Stuart Cooper, executive director of that group, said the movement’s unprecedented momentum would be further supercharged if Kennedy and the Trump administration follow through on a recommendation against fluoride.

Cooper predicted that most U.S. communities will have stopped fluoridating within years.

“I think what you are seeing in Florida, where every community is falling like dominoes, is going to now happen in the United States,” he said. “I think we’re seeing the absolute end of it.”

If Cooper’s prediction is right, Hayes said, widespread decay would be visible within years. Kids’ teeth will rot in their mouths, she said, even though “we know how to completely prevent it.”

“It’s unnecessary pain and suffering,” Hayes said. “If you go into any children’s hospital across this country, you’ll see a waiting list of kids to get into the operating room to get their teeth fixed because they have severe decay because they haven’t had access to either fluoridated water or other types of fluoride. Unfortunately, that’s just going to get worse.”

KFF Health News data editor Holly K. Hacker contributed to this article.

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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SACRAMENTO — President Donald Trump is vowing a new approach to getting homeless people off the streets by forcibly moving those living outside into large camps while mandating mental health and addiction treatment — an aggressive departure from the nation’s leading homelessness policy, which for decades has prioritized housing as the most effective way to combat the crisis.

“Our once-great cities have become unlivable, unsanitary nightmares,” Trump said in a presidential campaign video. “For those who are severely mentally ill and deeply disturbed, we will bring them to mental institutions, where they belong, with the goal of reintegrating them back into society once they are well enough to manage.”

Now that he’s in office, the assault on “Housing First” has begun.

White House officials haven’t announced a formal policy but are opening the door to a treatment-first agenda, while engineering a major overhaul of the housing and social service programs that form the backbone of the homelessness response system that cities and counties across the nation depend on. Nearly $4 billion was earmarked last year alone. But now, Scott Turner, who heads Trump’s Department of Housing and Urban Development — the agency responsible for administering housing and homelessness funding — has outlined massive funding cuts and called for a review of taxpayer spending.

“Thanks to President Trump’s leadership, we are no longer in a business-as-usual posture and the DOGE task force will play a critical role in helping to identify and eliminate waste, fraud and abuse and ultimately better serve the American people,” Turner said in a statement.

Staffing cuts already proposed would hit the part of the agency overseeing homelessness spending and Housing First initiatives particularly hard. Trump outlined his vision during his campaign, calling for new treatment facilities to be opened on large parcels of government land — “tent cities where the homeless can be relocated and their problems identified.” They could receive treatment and rehabilitation or face arrest. Now in office, he has begun to turn his attention to street homelessness, in March ordering Washington, D.C., to sweep encampments, potentially separating homeless people from their case managers and social service providers, derailing their path to housing.

The administration is discouraging local governments from following the federal policy, telling them it will not enforce homelessness contracts “to the extent that they require the project to use a housing first program model.” And, in a recent order “reducing the scope of the federal bureaucracy,” Trump slashed the U.S. Interagency Council on Homelessness, shrinking the agency responsible for coordinating funding and initiatives between the federal government, states, and local agencies, known as Continuums of Care.

“Make no mistake that Trump’s reckless attacks across the federal government will supercharge the housing and homelessness crisis in communities across the country,” Democratic U.S. Rep. Maxine Waters of Los Angeles said in response to the order.

Support Without Forced Treatment

Housing First was implemented nationally in 2004 under the George W. Bush administration to combat chronic homelessness, defined as having lived on the streets with a disabling condition for a long period of time. It was expanded under President Barack Obama as America’s plan of attack on homelessness and broadened by President Joe Biden, who argued that housing was a basic need, critical to health.

The policy aims to stabilize homeless people in permanent housing and provide them with case management support and social services without forcing treatment, imposing job requirements, or demanding sobriety. Once housed, the theory goes, homeless people escape the chaos of the streets and can then work on finding a job, taking care of chronic health conditions, or getting sober.

“When you’re on the streets, all you’re doing every day is figuring out how to survive,” said Ann Oliva, CEO of the National Alliance to End Homelessness. “Housing is the most important intervention that brings a sense of safety and stability, where you’re not just constantly trying to find food or a safe place to sleep.”

But Trump wants to gut taxpayer-subsidized housing initiatives. He is pushing for a punitive approach that would impose fines and potentially jail time on homeless people. And he wants to mandate sobriety and mental health treatment as the primary homelessness intervention — a stark reversal from Housing First.

The shift has ignited fear and panic among homelessness experts and front-line service providers, who argue that forcing treatment and criminalizing homeless people through fines and jail time simply doesn’t work.

“It’s only going to make things much worse,” said Donald Whitehead Jr., executive director of the National Coalition for the Homeless. “Throwing everybody into treatment programs just isn’t an effective strategy. The real problem is we just don’t have enough affordable housing.”

Trump got close to ending Housing First during his first term when he tapped Robert Marbut to lead the U.S. Interagency Council on Homelessness in 2019. Marbut pushed for mandating treatment and reducing reliance on social services, while curtailing taxpayer-subsidized housing. He argued that forcing homeless people to get sober and enter treatment would help them achieve self-sufficiency and end their homelessness. But covid-19 stalled those plans.

Now, Marbut said, he believes the president will finish the job.

“Trump knows that what we need to do is get funding back to treatment and recovery,” Marbut said. “The Trump administration is laser-focused on ending Housing First. They realized it was wrong the first time and that’s why I was selected to change it. They still realize it’s wrong.”

Trump and administration officials did not respond to questions from KFF Health News. A request to interview Turner was not granted. Project 2025’s “Mandate for Leadership,” a conservative policy blueprint from some of Trump’s closest advisers, explicitly calls for an end to Housing First.

Under Attack

Housing First is under attack not only from Republicans who have long criticized taxpayer-subsidized housing for homeless people, but also from Democrats responding to public frustration over homeless encampments multiplying around the nation. Last year, the federal government estimated that more than 770,000 people in the U.S. were homeless, a record high. That was up 18% from 2023. And while housing grows increasingly unaffordable, homeless camps have exploded, spilling into city parks, crowding sidewalks, and polluting sensitive waterways, despite unprecedented public spending.

Already, cities and states, liberal and conservative, are cracking down on street homelessness and targeting the mental health and addiction crisis. This is true even in deep-blue states like California, where Gov. Gavin Newsom has created a “CARE Court” initiative that can mandate treatment even though housing isn’t always available and threatened to withhold funding from cities and counties that don’t aggressively clear encampments.

San Francisco Mayor Daniel Lurie has proposed ending harm reduction for drug users. Los Angeles Mayor Karen Bass is prioritizing encampment sweeps even though the promise of housing or shelter is elusive. And San Jose Mayor Matt Mahan won initial City Council support for plans to arrest people who refuse shelter three times in 18 months and to divert permanent housing funding to pay for an expansion of homeless shelters.

Mahan believes liberals and advocates have been too “purist” because housing isn’t being built fast enough, while investments in shelter and treatment have been inadequate. “It can’t only be about Housing First,” he said.

Homelessness crackdowns have exploded since the U.S. Supreme Court made it easier for elected officials and law enforcement agencies to fine and arrest people for living outside. Since June, roughly 150 laws imposing fines or jail time have been passed, with about 45 in California alone, said Jesse Rabinowitz, campaign and communications director for the National Homelessness Law Center.

Rabinowitz and other experts say both Republicans and Democrats are undermining Housing First by criminalizing homelessness and conducting encampment sweeps that hinder the ability of front-line workers to get people into housing and services.

However, there’s disagreement on whether to entirely dismantle the policy. Liberal leaders want to maintain existing streams of housing and homelessness funding while expanding shelters and moving people off the streets. Conservatives blame Housing First for the rise in homelessness and are instead pushing for mandatory treatment and cutting housing subsidies.

“I used to think it was just a waste of taxpayer money because it wasn’t treatment-based, but now I think it actually enables people to remain homeless and addicted,” Marbut said of the Housing First approach. He favors requiring behavioral health treatment as a prerequisite to housing.

Evidence shows Housing First has been successful in moving vulnerable, chronically homeless people into permanent housing. For instance, a systematic review of 26 studies indicated that, compared with treatment-first, “Housing First programs decreased homelessness by 88%.”And the approach has shown remarkable improvements in health, reducing costly hospital and emergency room care.

Experts say Housing First has been severely underfunded and implemented unevenly, with some homelessness agencies taking federal money but not providing appropriate services or housing placements.

“Making it the broad policy to all homelessness leaves it vulnerable to being attacked the way it’s currently being attacked,” said Philip Mangano, a Republican who spearheaded the development of Housing First as the lead homelessness adviser to George W. Bush. “The truth is it’s a mixed bag. For some people like those who are using substances, the evidence just isn’t there yet.”

Others say it has been ineffective in some places because of rampant misspending, abuse, and a lack of accountability.

“This works when it’s done right,” said Marc Dones, a policy director for homelessness initiatives at the University of California-San Francisco, arguing that housing can save lives and lower spending on costly health care. “But I think we have been too polite and too nice for too long about some real incompetence.”

Jeff Olivet, who succeeded Marbut at the U.S. Interagency Council on Homelessness under Biden, said Marbut and Trump’s positions are misguided. He argues that Housing First has worked for those who have gotten indoors, yet the number of people falling into homelessness outpaces those getting housing. And he says there was never enough money to provide housing and supportive services for everyone in need.

“Housing First is not just about sticking somebody in an apartment and hoping for the best,” Olivet said. “It’s really about providing stable housing and access to health care, mental health and substance use treatment, and to support people, but not forcing it on people.”

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The National Institutes of Health employee said she knew things would be difficult for federal workers after Donald Trump was elected. But she never imagined it would be like this.

Focused on Alzheimer’s and other dementia research, the worker is among thousands who abruptly lost their jobs in the Trump administration’s federal workforce purge. The way she was terminated — in February through a boilerplate notice alleging poor performance, something she pointedly said was “not true” — made her feel she was “losing hope in humans.”

She said she can’t focus or meditate, and can barely go to the gym. At the urging of her therapist, she made an appointment with a psychiatrist in March after she felt she’d “hit the bottom,” she said.

“I am going through hell,” said the employee, who worked at the National Institute on Aging, one of 27 centers that make up the NIH. The worker, like others interviewed for this story, was granted anonymity because of the fear of professional retaliation.

“I know I am a mother. I am a wife. But I am also a person who was very happy with her career,” she said. “They took my job and my life from my hands without any reason.”

President Trump and his allies have increasingly denigrated the roughly 2 million people who make up the federal workforce, 80% of whom work outside the Washington, D.C., area. Trump has said federal workers are “destroying this country,” called them “crooked” and “dishonest,” and insinuated that they’re lazy. “Many of them don’t work at all,” he said earlier this month.

Elon Musk — who is the world’s richest person and whose Department of Government Efficiency, created by a Trump executive order, is infiltrating federal agencies and spearheading mass firings — has claimed without evidence that “there are a number of people on the government payroll who are dead” and others “who are not real people.” At a conference for conservatives in February, Musk brandished what he called “the chain saw for bureaucracy” and said that “waste is pretty much everywhere.”

The firings that began in February are taking a significant toll on federal employees’ mental health. Workers said they feel overwhelmed and demoralized, have obtained or considered seeking psychiatric care and medication, and feel anxious about being able to pay bills or afford college for their children.

Federal employees are bracing for more layoffs after agencies were required to deliver plans by this month for large-scale staff reductions. Compounding the uncertainty: After judges ruled that some initial firings were illegal, agencies have rehired some workers and placed others on paid administrative leave. Then, Trump on March 20 issued a memo giving the Office of Personnel Management more power to fire people across agencies.

Researchers who study job loss say these mass layoffs not only are disrupting the lives of tens of thousands of federal workers but also will reverberate out to their spouses, children, and communities.

“I’d expect this will have long-lasting impacts on these people’s lives and those around them,” said Jennie Brand, a professor of sociology at UCLA who wrote a paper about the implications of job loss. “We can see this impact years down the road.”

Studies have shown that people who are unemployed experience greater anxiety, depression, and suicide risk. The longer the period of unemployment, the worse the effects.

Couples fight more when one person loses a job, and if it’s a man, divorce rates increase.

Children with an unemployed parent are more likely to do poorly in school, repeat a grade, or drop out. It can even affect whether they go to college, Brand said. There’s an “intergenerational impact of instability,” she said.

And it doesn’t stop there. When people lose their jobs, especially when it’s many people at once, the wealth and resources available in their community are reduced. Kids see fewer employed role models. As families are forced to move, neighborhood stability gets upended. Unemployed people often withdraw from social and civic life, avoiding community gatherings, church, or other places where they might have to discuss or explain their job loss.

Although getting a new job can alleviate some of these problems, it doesn’t eliminate them, Brand said.

“It’s not as if people just get new jobs and then pick up the activities they used to be involved with,” she said. “There’s not a quick recovery.”

Slashing Cultural Norms

The firings are upending a long-standing norm of the public sector — in exchange for earning less money compared with private-sector work, people had greater job security and more generous benefits. Now that’s no longer the case, fired workers said in interviews.

With the American economy moving toward temporary and gig jobs, landing a traditional government job was supposed to be “like you’ve got the golden goose,” said Blake Allan, a professor of counseling psychology at the University of Houston who researches how the quality of work affects people’s lives.

Even federal workers who are still employed face the daily question of whether they’ll be fired next. That constant state of insecurity, Allan said, can create chronic stress, which is linked to anxiety, depression, digestive problems, heart disease, and a host of other health issues.

One employee at the Centers for Medicare & Medicaid Services, who was granted anonymity to avoid professional retaliation, said the administration’s actions seem designed to cause enough emotional distress that workers voluntarily leave. “I feel like this ax will always be over my head for as long as I’m here and this administration is here,” the employee said.

Federal workers who passed on higher-paying private sector jobs because they wanted to serve their country may feel especially gutted to hear Trump and Musk denigrate their work as wasteful.

“Work is such a fundamental part of our identity,” Allan said. When it’s suddenly lost, “it can be really devastating to your sense of purpose and identity, your sense of social mattering, especially when it’s in a climate of devaluing what you do.”

Andrew Hazelton, a scientist in Florida, was working on improving hurricane forecasts when he was fired in February from the National Oceanic and Atmospheric Administration. The mass firings were carried out “with no humanity,” he said. “And that’s really tough.”

Hazelton became a federal employee in October but had worked alongside NOAA scientists for over eight years, including as an employee at the University of Miami. He lost his job as part of a purge targeting probationary workers, who lack civil service protections against firings.

His friends set up a GoFundMe crowdfunding page to provide a financial cushion for him, his wife, and their four children. Then in March, after a federal judge’s order requiring federal agencies to rescind those terminations, he was notified that he had been reinstated on paid administrative leave.

“It’s created a lot of instability,” said Hazelton, who still isn’t being allowed to do his work. “We just want to serve the public and get our forecasts and our data out there to help people make decisions, regardless of politics.”

Health Coverage Collateral

Along with their jobs, many federal workers are losing their health insurance, leaving them ill equipped to seek care just as they and their families are facing a tidal wave of potential mental and physical health consequences. And the nation’s mental health system is already underfunded, understaffed, and overstretched. Even with insurance, many people wait weeks or months to receive care.

“Most people don’t have a bunch of money sitting around to spend on therapy when you need to cover your mortgage for a couple months and try to find a different job,” Allan said.

A second NIH worker considered talking to a psychiatrist and potentially going on an antidepressant because of anxiety after being fired in February.

“And then the first thought after that was: ‘Oh, I’m about to not have insurance. I can’t do that,’” said the worker, who was granted anonymity to avoid professional retaliation. The worker’s health benefits were set to end in April — leaving too little time to get an appointment with a psychiatrist, let alone start a prescription.

“I don’t want to go on something and then have to stop it immediately,” the worker said.

The employee, one of several NIH workers reinstated this month, still fears getting fired again. The worker focuses on Alzheimer’s and related dementias and was inspired to join the agency because a grandmother has the disease.

The worker worries that “decades of research are going to be gone and people are going to be left with nothing.”

“I go from anxiety to deep sadness when I think about my own family,” the employee said.

The NIH, with its $47 billion annual budget, is the largest public funder of biomedical research in the world. The agency awarded nearly 59,000 grants in fiscal 2023, but the Trump administration has begun canceling hundreds of grants on research topics that new political appointees oppose, including vaccine hesitancy and the health of LGBTQ+ populations.

The NIH worker who worked at the National Institute on Aging was informed in mid-March that she would be on paid administrative leave “until further notice.” She said she is not sure whether she would find a similar job, adding that she “cannot be at home doing nothing.”

Apart from loving her job, she said, she has one child in college and another in high school and needs stable income. “I don’t know what I’m going to do next.”

We’d like to speak with current and former personnel from the Department of Health and Human Services or its component agencies who believe the public should understand the impact of what’s happening within the federal health bureaucracy. Please message KFF Health News on Signal at (415) 519-8778 or get in touch here.

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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PLEASANTVILLE, Iowa — Zach Mecham has heard politicians demand that Medicaid recipients work or lose their benefits. He also has run into a jumble of Medicaid rules that effectively prevent many people with disabilities from holding full-time jobs.

“Which is it? Do you want us to work or not?” he said.

Mecham, 31, relies on the public insurance program to pay for services that help him live on his own despite a disability caused by muscular dystrophy. He uses a wheelchair to get around and a portable ventilator to breathe.

A paid assistant stays with Mecham at night. Then a home health aide comes in the morning to help him get out of bed, go to the bathroom, shower, and get dressed for work at his online marketing business. Without the assistance, he would have to shutter his company and move into a nursing home, he said.

Private health insurance plans generally do not cover such support services, so he relies on Medicaid, which is jointly financed by federal and state governments and covers millions of Americans who have low incomes or disabilities.

Like most other states, Iowa has a Medicaid “buy-in program,” which allows people with disabilities to join Medicaid even if their incomes are a bit higher than would typically be permitted. About two-thirds of such programs charge premiums, and most have caps on how much money participants can earn and save.

Some states have raised or eliminated such financial caps for people with disabilities. Mecham has repeatedly traveled to the Iowa Capitol to lobby legislators to follow those states’ lead. The “Work Without Worry” bill would remove income and asset caps and instead require Iowans with disabilities to pay 6% of their incomes as premiums to remain in Medicaid. Those fees would be waived if participants pay premiums for employer-based health insurance, which would help cover standard medical care.

Disability rights advocates say income and asset caps for Medicaid buy-in programs can prevent participants from working full time or accepting promotions. “It’s a trap — a poverty trap,” said Stephen Lieberman, a policy director for the United Spinal Association, which supports the changes.

Lawmakers in Florida, Hawaii, Indiana, Iowa, Maine, Mississippi, and New Jersey have introduced bills to address the issue this year, according to the National Conference of State Legislatures.

Several other states have raised or eliminated their program’s income and asset caps. Iowa’s proposal is modeled on a Tennessee law passed last year, said Josh Turek, a Democratic state representative from Council Bluffs. Turek, who is promoting the Iowa bill, uses a wheelchair and earned two gold medals as a member of the U.S. Paralympics basketball team.

Proponents say allowing people with disabilities to earn more money and still qualify for Medicaid would help ease persistent worker shortages, including in rural areas where the working-age population is shrinking.

Turek believes now is a good time to seek expanded employment rights for people with disabilities, since Republicans who control the state and federal governments have been touting the value of holding a job. “That’s the trumpet I’ve been blowing,” he said with a smile.

The Iowa Legislature has been moving to require many nondisabled Medicaid recipients to work or to document why they can’t. Opponents say most Medicaid recipients who can work already do so, and the critics say work requirements add red tape that is expensive to administer and could lead Medicaid recipients to lose their coverage over paperwork issues.

Iowa Gov. Kim Reynolds has made Medicaid work requirements a priority this year. “If you can work, you should. It’s common sense and good policy,” the Republican governor told legislators in January in her “Condition of the State Address.” “Getting back to work can be a lifeline to stability and self-sufficiency.”

Her office did not respond to KFF Health News’ queries about whether Reynolds supports eliminating income and asset caps for Iowa’s buy-in program, known as Medicaid for Employed People with Disabilities.

National disability rights activists say income and asset caps on Medicaid buy-in programs discourage couples from marrying or even pressure them to split up if one or both partners have disabilities. That’s because in many states a spouse’s income and assets are counted when determining eligibility.

In Iowa, for example, the monthly net income cap is $3,138 for a single person and $4,259 for a couple.

Iowa’s current asset cap for a single person in the Medicaid buy-in plan is $12,000. For a couple, that cap rises only to $13,000. Countable assets include investments, bank accounts, and other things that could be easily converted to cash, but not a primary home, vehicle, or household furnishings.

“You have couples who have been married for decades who have to go through what we call a ‘Medicaid divorce,’ just to get access to these supports and services that cannot be covered in any other way,” said Maria Town, president of the American Association of People with Disabilities.

Town said some states, including Massachusetts, have removed income caps for people with disabilities who want to join Medicaid. She said the cost of adding such people to the program is at least partially offset by the premiums they pay for coverage and the increased taxes they contribute because they are allowed to work more hours. “I don’t think it has to be expensive” for the state and federal governments, she said.

Congress has considered a similar proposal to allow people with disabilities to work more hours without losing their Social Security disability benefits, but that bill has not advanced.

Although most states have Medicaid buy-in programs, enrollment is relatively low, said Alice Burns, a Medicaid analyst at KFF, a health information nonprofit that includes KFF Health News, the publisher of California Healthline.

Fewer than 200,000 people nationwide are covered under the options, Burns said. “Awareness of these programs is really limited,” she said, and the income limits and paperwork can dissuade potential participants.

In states that charge premiums for Medicaid buy-in programs, monthly fees can range from $10 to 10% of a person’s income, according to a KFF analysis of 2022 data.

The Iowa proposal to remove income and asset caps has drawn bipartisan backing from legislators, including a 20-0 vote of approval from the House Health and Human Services Committee. “This aligns with things both parties are aiming to do,” said state Rep. Carter Nordman, a Republican who chaired a subcommittee meeting on the bill. Nordman said he supports the idea but wants to see an official estimate of how much it would cost the state to let more people with disabilities participate in the Medicaid buy-in program.

Mecham, the citizen activist lobbying for the Iowa bill, said he hopes it allows him to expand his online marketing and graphic design business, “Zach of All Trades.”

On a recent morning, health aide Courtnie Imler visited Mecham’s modest house in Pleasantville, a town of about 1,700 people in an agricultural region of central Iowa. Imler chatted with Mecham while she used a hoist to lift him out of his wheelchair and onto the toilet. Then she cleaned him up, brushed his hair, and helped him put on jeans and a John Deere T-shirt. She poured him a cup of coffee and put a straw in it so he could drink it on his own, swept the kitchen floor, and wiped the counters. After about an hour, she said goodbye.

After getting cleaned up and dressed, Mecham rolled his motorized wheelchair over to his plain wooden desk, fired up his computer, and began working on a social media video for a client promoting a book. He scrolled back and forth through footage of an interview she’d done, so he could pick the best clip to post online. He also shoots video, takes photos, and writes advertising copy.

Mecham loves feeling productive, and he figures he could work at least twice as many hours if not for the risk of losing Medicaid coverage. He said he’s allowed to make a bit more money than Iowa Medicaid’s standard limit because he signed up for a federal option under which he eventually expects to work his way off Social Security disability payments.

There are several such options for people with disabilities, but they all involve complicated paperwork and frequent reports, he said. “This is such a convoluted system that I have to navigate to build any kind of life for myself,” he said. Many people with disabilities are intimidated by the rules, so they don’t apply, he said. “If you get it wrong, you lose the health care your life depends on.”

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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On a sunny weekday in Atlanta, a small crowd of people gathered for a rally outside of a labor union headquarters building.

The event, put together by Atlanta-area Democratic U.S. Rep. Nikema Williams, was attended mostly by union members and recently fired federal workers, including Ryan Sloane.

“I was fired by an anonymous email at 9 p.m. in the middle of a holiday weekend,” he said.

Sloane is still seeking reinstatement, but he feels he no longer has much to lose by speaking out.

“I’m only here today because they cannot fire me twice,” Sloane said.

When he received his termination notice, he was a few months into a job as a public affairs specialist at the Centers for Disease Control and Prevention.

At the CDC, his days were spent updating far-flung local TV, radio, and newspaper journalists about threats such as seasonal flu, measles, and food safety in their communities.

A judge has ordered the reinstatement of some fired federal employees, at least temporarily. But their jobs are still on the line.

Sloane said his former colleagues at the CDC whose jobs aren’t yet in limbo are scared.

“They are terrified that their life’s work is going to be deleted from servers and not backed up because it does not comport with the ideologies of the new administration,” he said. “No one is benefiting from this.”

From the end of January to mid-February, the Trump administration took offline some CDC webpages and froze external communications, including its widely read Morbidity and Mortality Weekly Report epidemiological digest.

The webpages that were removed included CDC public health reports, datasets, and guidance on infectious diseases and sexual health. After a court order, some agency information was restored, at least for now.

But even temporary disruptions to CDC communications could have big ripple effects.

It is information that state and local health departments, hospitals, university researchers, and others rely on to help them respond to outbreaks.

“CDC is there to provide technical information, provide funding, provide support, but it’s a collaborative work, working together to keep Americans safe,” said former CDC Director Tom Frieden, who headed the agency from 2009 to 2017. He is now president and CEO of the nonprofit organization Resolve to Save Lives. “In this country, we have a patchwork or network of public health. It’s really up to the local, city, and state health departments to get the job done.”

City and state health agencies also need the collaboration of CDC experts to help investigate local disease outbreaks and other threats to public health.

A clinician who has worked at the agency for more than two decades pointed to the CDC’s singular ability to send medical supplies and deploy highly specialized teams of scientists to help local communities identify and contain outbreaks. KFF Health News agreed not to use the clinician’s name because she fears she will be fired for airing these views publicly.

“A lot of them are assigned to state and local health departments, so really even beyond individual positions, any funding cuts that the agency takes are also passed on to state and local health departments,” the clinician said. “A lot of their budget comes from federal money as well.”

The Trump administration has attempted to terminate hundreds of employees from the CDC alone, along with hundreds more workers at the National Institutes of Health and other federal agencies with a U.S. health and safety role.

Many public health and science researchers are concerned about the cuts’ impacts on the nation’s ability to respond to threats — and about whether state and local public health departments will be able to keep communities healthy without the CDC’s partnership.

Billionaire Elon Musk has said his Department of Government Efficiency intends to keep cutting federal agencies’ budgets and staff, targeting what it calls “fraud.”

“Anytime someone gets fired, it’s always difficult. But with $36 trillion in debt, we have to reduce the size of the federal government,” Republican U.S. Rep. Marjorie Taylor Greene told WABE during a March visit to the Georgia State Capitol.

Her district includes parts of suburban Atlanta about 30 miles from CDC headquarters.

Greene also chairs a House subcommittee also called “DOGE,” for “Delivering on Government Efficiency.”

“Fortunately, with all the investments that are being brought back into the country under President Trump, I really hope that those federal workers are able to find new jobs,” she said.

She did not comment on whether local public health departments around the country would be able to work efficiently without the support of CDC experts who have been terminated.

But many U.S. public health experts are expressing concern.

The CDC has long been a key training ground for the next generation of U.S. public health researchers.

Emory University epidemiology professor Patrick Sullivan was one of them earlier in his career. The HIV expert previously worked at the CDC for about 15 years.

“When I started working in HIV prevention at CDC in the early 1990s, we didn’t have the treatments that essentially allowed people living with HIV to have a full, healthy, normal lifespan,” he said. “We didn’t have the treatments that essentially allowed people living with HIV to have a test that people could take home to test themselves.”

Sullivan said the progress he has seen over the last several decades gave him optimism, and that advances in HIV treatment and prevention are a great example of the importance of federal support for public health work.

“Discovery science and pharmacy science really have given us the tools that we need to end the HIV epidemic in the United States,” he said.

But, to have those scientific tools without adequate public health staff or funding to use them, he said, will cost American lives.

This article is from a partnership that includes WABE, NPR, and KFF Health News.

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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