People with disabilities have long fought for the right to live at home rather than in institutions. Now, the Department of Justice says states don’t have to help make that happen.

The decision by the Trump administration comes amid massive cuts in federal funding for Medicaid. Advocates worry this could be a one-two punch for disabled Americans who want to live independently.

KFF Health News senior correspondent Stephanie Armour joined WAMU’s Health Hub on Aug. 19 to explain what this change means for Americans with disabilities and their loved ones.

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Doula Taja Iglesias and her business partner have built a space in Alexandria, Virginia, that’s all things pregnancy, birth, and childcare.

Comfortable couches in one area invite expectant parents to settle in for birth education classes. In another, a colorful pile of toys await the babies and toddlers. And there’s a free supply of diapers and food. Years ago, as Iglesias was giving birth and expressing her wish not to have an epidural for pain, she felt isolated and that her preferences were dismissed by the medical staff. Today, she works hard to make sure other parents can have the support of a doula.

“We kind of created this to fill the gaps that we realized existed because we had to go through it,” Iglesias said. She’s the founder of The Momager Co., a doula agency dedicated to giving parents care throughout the perinatal process.

Iglesias said one of the widest gaps is the lack of access to doula care for parents on Medicaid.

Doula care has been associated with improved breastfeeding initiation and less maternal anxiety. The perinatal doula care covers education about pregnancy and birth, advocacy for new parents in the hospital, and help after delivery with lactation and recovery. Doulas often work alongside doctors or midwives who provide medical care.

“The doula is the person that already knows what you want. We know what your dream birth is,” Iglesias explained. “We’re somebody that is standing on the side of the parent.”

Doula Taja Iglesias, founder of The Momager Co., a doula agency, offers some of her services from a welcoming space in Alexandria, Virginia. (Lynne Shallcross/KFF Health News) (Lynne Shallcross/KFF Health News) Your browser does not support the audio element.

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In 2022, Virginia became the fourth state to start reimbursing doulas through Medicaid. A push to address the country’s maternal mortality rates, which are higher than in other high-income countries, has been an engine for lawmakers looking to give women on Medicaid the support of doula care. For example, another Virginia law requires hospitals to allow an extra person, other than a family member, in the delivery room.

The services offered and the number of visits covered by Medicaid vary by state, but today doulas are covered in 26 states and Washington, D.C. An additional 20 states have considered proposals or are in the process of implementing similar policies.

In Virginia, doulas say the administrative and logistical challenges they encounter are trickling down to moms. A review of the Virginia Certification Board’s Doula Registry this June found just 19 doulas based in Northern Virginia accept payment from Medicaid.

Doulas say that while Medicaid coverage of their services is a good first step, the amount of paperwork required in the approval process and the low reimbursement rates mean that fewer doulas participate in the Medicaid program, reducing access for beneficiaries.

A 2021 law that extended doula benefits to Medicaid enrollees sought to improve the health of Virginia parents and decrease the number of mothers who die during the time surrounding birth. The state’s maternal mortality rate is among the nation’s highest.

As co-chair of the state’s task force on doula regulations, Iglesias helps shape policies that make it easier for moms on Medicaid to get doula care through the program.

To access doula services in Virginia, parents on Medicaid must have a referral from a doctor, and their doula must be approved by the state to care for Medicaid beneficiaries. Iglesias would like to see that process be quicker and less costly for doulas, who pay $75-$150 for certification.

While the policy debates continue, Iglesias has decided not to get certified to care for parents on Medicaid. Instead, she raises money to provide doula care for parents on Medicaid outside the system.

“I don’t want to be state-certified with a training that I feel is not full and complete, a training that doesn’t touch on that community aspect of work,” she said.

Iglesias said the services covered are too limited and Medicaid does not allow her to work with clients as she sees fit. Virginia’s payment covers up to eight doula visits. All but the first visit are limited to one hour, which Iglesias said isn’t enough time.

“If you want to actually build a relationship with this person that you’re going to be standing in with in their most vulnerable moment, it ain’t happening,” Iglesias said.

Informational pamphlets are displayed at The Momager Co., which offers appointments and group classes. (Lynne Shallcross/KFF Health News) The Momager Co. operates a store with free postpartum provisions, maternity clothes, baby essentials, and breast/chestfeeding supplies, as well as food and hygiene items. (Lynne Shallcross/KFF Health News) Donated baby clothing is available free to parents at the Alexandria, Virginia-based doula agency. (Lynne Shallcross/KFF Health News)

While pursuing her PhD at George Mason University, Desirae Leaphart Mensah studied the initial implementation of the doula reimbursement policy in Virginia.

Mensah collected data from 2022 to 2024 for a study published this year. She interviewed doulas eager to serve clients on Medicaid. But some told her they got bogged down in the paperwork and never were certified. Doulas report similar struggles with the certification process today.

Mensah said the mismatch between the size of the Medicaid population in Northern Virginia and the low number of doulas available leads to fewer parents receiving doula care.

Coverage is a good first step, Mensah noted, but it doesn’t translate to enough access. During the first two years of implementation, fewer than 1% of Medicaid births in Virginia used doula services. That study is the latest available.

Kenda Denia, executive director of Birth in Color, a statewide doula collective in Virginia, welcomed the law at first.

“But now we’re looking at certain logistics that are not working,” Denia said.

Private-pay doulas in Virginia commonly charge $1,200 to $3,000 per pregnancy. For families wanting more extensive prenatal or postpartum services, the fee can be as much as $6,000. Virginia’s Medicaid program, also known as Cardinal Care, reimburses doulas $859 per pregnancy. They receive an additional $100 if their client attends prenatal and postpartum doctors’ visits.

The pay is too low and does not reflect the value of the services they provide, Denia said. “Midwives don’t get paid this. Doctors don’t get paid this,” she explained. “We are driving to people’s homes for postpartum and prenatal care.”

Doulas might wait weeks or months for reimbursement, and the pay is not flexible. The Medicaid reimbursement rate is the same across the state and does not capture the higher cost of living in areas like Alexandria. It’s roughly 32% more expensive in Alexandria than the average cost of living in Virginia, according to ERI Economic Research Institute, a private data analytics group.

Despite the barriers, Denia applauded parts of the policy. Medicaid coverage of doulas means that more parents can have a “birthing bestie,” she said.

Before getting pregnant, Juliana Navia had no idea what doulas did. But while at a free clinic for her prenatal checkups, Navia connected with Iglesias. Later, Iglesias became Navia’s doula and helped her navigate a difficult situation when she wasn’t getting the kind of care she wanted at the hospital.

“I was stressed giving birth, but my doula helped me,” Navia said. “I was advocated for.”

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Céline Gounder, KFF Health News’ editor-at-large for public health, discussed the cyclosporiasis outbreak on CBS News’ CBS Mornings on Aug. 5. Gounder discussed New Mexico’s measles outbreak on CBS News 24/7’s The Daily Report on Aug. 4. She also discussed peptides on Ideastream Public Media/WKSU’s Sound of Ideas on Aug. 3.

• Click here to watch Gounder on CBS Mornings.
• Click here to watch Gounder on The Daily Report.
• Click here to hear Gounder on Sound of Ideas.

KFF Health News chief Washington correspondent Julie Rovner discussed the end of a Biden-era Medicare Part D subsidy on WBUR’s Here & Now on Aug. 3.

• Click here to hear Rovner on Here & Now.

KFF Health News Southern correspondent Sam Whitehead discussed the new medical frailty work requirements on WUGA’s The Georgia Health Report on July 31.

• Click here to hear Whitehead on The Georgia Health Report.
• Read Whitehead’s “Doctors ‘Cringe’ at Possibility of Documenting Which Medicaid Enrollees Too Sick To Work.”

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

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For years, Washington, D.C., has paid for Medicaid — the state-federal health insurance program for low-income people — out of its general budget. But next year, the city is shifting part of that recurring multimillion-dollar cost to a new funding source: opioid settlement dollars.

That’s raising red flags for addiction recovery advocates, people directly affected by the crisis, and the commission in charge of recommending how the city uses its share of the settlement money.

The opioid payouts come from a host of companies that made or distributed prescription painkillers and were accused of fueling the overdose crisis. State and local governments nationwide are set to receive more than $50 billion over almost two decades. Washington, D.C.’s cut is expected to exceed $100 million.

The money is meant to remediate the addiction crisis, often by increasing services or funding new programs.

But many states are facing increasing fiscal pressures as they are squeezed by inflation, federal funding cuts, and rising costs. Some officials have been tempted to turn to opioid settlement cash as a budget stopgap — an idea that can trigger opposition and outrage from recovery advocates and people who have struggled with opioid addiction and their family members.

“These funds were awarded to D.C. for very specific reasons and with a specific mandate, which are to remediate issues related to the opioid crisis in new and innovative ways,” said Queen Adesuyi, a partner at Reframe Health and Justice, a consulting group for community-based organizations, who is crying foul over the proposed fiscal year 2027 budget.

A document provided to KFF Health News shows line items in the district’s fiscal 2027 budget that would direct about $2.3 million in opioid settlement funds to help pay for the city’s Medicaid contribution and at least $5.5 million to support addiction treatment centers previously funded through the general budget. Substituting opioid settlement dollars for general funding keeps overall spending on treatment flat instead of increasing.

“Opioid settlement dollars are not meant to be a rainy-day fund for existing government obligations,” said Shelly Weizman, associate director of the Center on Addiction and Public Policy at Georgetown Law’s O’Neill Institute.

More than 80 individuals and 30 city organizations signed a letter protesting this use of settlement dollars, saying the district’s Department of Behavioral Health planned to spend opioid cash to “pay off its own debts.” The letter was sent to DBH Director Barbara Bazron; the chair of the D.C. Council’s Committee on Health, Christina Henderson; and Attorney General Brian Schwalb.

Chad Jackson, himself in recovery, chairs the district’s Opioid Abatement Advisory Commission, which was created to advise the city on how to spend its settlement dollars. Jackson called the latest move supplantation, a budgeting tactic that shifts money from one fund to another to free up dollars.

“If the opioid settlement funds were not there, I feel pretty confident that these things would have been funded, because they have to be funded,” Jackson said.

What’s happening now is against the district’s opioid litigation law, he said.

The law says that money from the district’s opioid abatement fund “shall supplement, and not supplant.”

“It’s a pretty tightly written law where the intent is very clear: Do not supplant,” Weizman said.

Adesuyi, an advocate for programs that help people who use drugs, said the council is flouting that law and that it’s a “slap in the face.”

Queen Adesuyi is a Washington, D.C.-based harm reduction advocate and partner at Reframe Health and Justice, a consulting group for community-based organizations. At the July 15 meeting of the Opioid Abatement Advisory Commission, they speak against the city’s use of opioid settlement dollars to fill budget holes. (Aneri Pattani/KFF Health News)

Councilmember Henderson and Attorney General Schwalb weighed in too.

“We are also concerned that DBH may be using the settlement monies for other unauthorized purposes,” they wrote in a July 17 letter to the department. They highlighted the $2.3 million used to cover the city’s Medicaid contribution and asked the department to explain by July 31 how it determined that was legal.

It’s unclear whether the Department of Behavioral Health met that deadline. DBH, Henderson’s office, and the attorney general’s office did not respond to that specific question.

However, DBH spokesperson Denise Reed said in a statement that the department is “committed to compliance with all statutory requirements governing opioid settlement funds.” The department’s general position has been that its budget was approved by the council, and that the funding supports efforts that counter opioid addiction.

The council in June “passed a legally-certified budget for the next fiscal year that makes the best use of all local resources, including the opioid settlement fund, to award grants to 17 community-based providers who last year served nearly 9,800 residents including 3,500 in medication-assisted treatment for opioid addiction,” Reed told KFF Health News.

The district’s budget is pending a 30-day “congressional review,” which is the last step in its annual budgeting process.

Still, some residents like Adesuyi want more accountability for how the opioid money is spent.

“The drug supply is getting a lot more unpredictable, which calls for some nimbleness, and it calls for interventions that are more courageous. Unfortunately, DBH is not meeting the mark when it comes to that,” Adesuyi said, adding, “It’s frustrating, it’s disappointing, and it’s enraging because people are dying unnecessarily in the district to overdose.”

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Julie Rovner, KFF Health News’ chief Washington correspondent and host of the What the Health? podcast, joins An Arm and a Leg host Dan Weissmann to discuss the state of U.S. healthcare.

Rovner talks about the fallout from Trump administration cuts to Medicaid and Affordable Care Act subsidies. She also shares why she thinks healthcare will play a big role in the 2028 presidential election, and how she hopes her new podcast project — “How Would You Fix it?” — will contribute to the discussion.

You can hear “How Would You Fix It?” on Rovner’s weekly What the Health? From KFF Health News podcast, in which she speaks with newsmakers and journalists from top media outlets about the latest health policy headlines. 

Dan Weissmann @danweissmann @danweissmann.bsky.social Host and producer of "An Arm and a Leg." Previously, Dan was a staff reporter for Marketplace and Chicago's WBEZ. His work also appears on "All Things Considered," Marketplace, the BBC, "99% Invisible," and "Reveal," from the Center for Investigative Reporting. Credits Emily Pisacreta Producer Lynn Barbera Producer Adam Raymonda Audio wizard Ellen Weiss Editor Click to open the Transcript Transcript: Julie Rovner is worried: Checking in with a veteran DC reporter.

Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

Dan: Hey there. It was just a little more than a year ago, in May 2025, the last time I checked in with my colleague Julie Rovner. She’s the chief Washington correspondent for our pals at KFF Health News and in what I would call a normal world, like a little more than a year would be really, really soon to talk with her again on this show.

Cause when I started making An Arm and a Leg, I didn’t expect that trying to keep up with the news was gonna be anything I would really have to think about too much. Like, I was setting out to understand and explain a multi-trillion dollar chunk of the economy that isn’t the tech industry, so I was like, how fast could it possibly move? And Julie Rovner’s thing is fast-moving news. On her weekly podcast, What The Health?, she leads a round table of health policy experts and journalists, and pours over a steady stream of headlines. Like whatever happens, big or small, Julie is tracking it. 

And then came 2025, and suddenly there’s this avalanche of news, and it’s big. Like, the Trump administration was making these sweeping changes, cuts to federal health programs. It was a ton of change, and I wanted to talk to Julie to try and wrap my head around it. And she told me even she was struggling to keep up. 

Here’s what she said then.

Julie Rovner: I’m trying to keep a running list of what’s been cut and what’s been restored, yeah, and it’s virtually impossible because there’s 20 things every day.

Dan: Yeah. And a lot’s happened since then. Like, Congress has added work requirements to Medicaid. It allowed federal subsidies for Obamacare to expire for millions of people. And those are, like, the biggest picture items. The rest of it feels like a blur. So, pop quiz: do we have a permanent FDA commissioner, CDC director, surgeon general?

I looked it up. As of July 21 the answer is no, in all three cases. It is an avalanche. So I wanted to talk to Julie again to get a glimpse at that avalanche from, like, further up the mountain, so to speak. 

Julie, thank you so much for coming back.

Julie Rovner: Always a pleasure, Dan.

Dan: Well, we’ll see how much of a pleasure it is to talk about the American healthcare system, but let’s give it a shot. 

Dan: This is An Arm and a Leg, a show about why healthcare costs so freaking much and what we can maybe do about it. I’m Dan Weissmann. I’m a reporter. I like a challenge, so the job we’ve chosen here is to take one of the most enraging, terrifying, depressing parts of American life and bring you something entertaining, empowering, and useful. This time with help from Julie Rovner. Here we go.

Julie, last time we talked, you were astonished and worried about the pace of change and, like, destruction given all the cuts at the Department of Health and Human Services. And here’s what you said then…

Julie Rovner: How I’ve been thinking about this is that our healthcare system is a giant Jenga tower and it’s a little wobbly and what holds it up is everything that happens from the Department of Health and Human Services and they’re yanking out sticks from this Jenga tower as fast as they possibly can and when the whole thing comes down, it’s gonna be very not pretty.

Dan: So you said that a year and change ago, and just like the news I’m seeing this week, we’re taping more than a week before we’re gonna publish this, but there’s been a huge public health story in the news. You know, this outbreak of a foodborne parasite called cyclospora that causes explosive diarrhea.

Boris Sanchez: a warning to more sensitive viewers, this next story is kind of gross.

Caitríona Perry: If you are about to tuck into a bowl of raspberries or a big plate of salad, we’re very sorry because we may be about to put you off your food.

Dr. Richard Smith: If you’re somebody that’s into going to salad bars on a weekly basis Just give that a rest for a week or two

Dan: Yeah again, we’re taping this in mid-July, so maybe this all gets cleared up by the time we publish, but right now, like, I’m personally having early COVID flashbacks trying to figure out what fruits and vegetables are safe to eat and how long I have to cook them.

And you know, sure enough, folks are pointing out that among last year’s many cuts at HHS was federal tracking of a half dozen foodborne pathogens, including this one, cyclospora. So I mean, it all feels a little on the nose. Julie, how are you seeing all this play out?

Julie Rovner: Yeah, it does feel very on the nose, if you will, um, because we’re, like, a month into this outbreak, and it’s a very big outbreak. But we still don’t know what’s causing it. So now we’re having, you know, I saw this morning, uh, a recommendation from a doctor said, “Just don’t eat any fresh fruits and vegetables for the next week or so,” um, because this is unfortunately a parasite that doesn’t –  you can’t necessarily get rid of by washing.

Which is not to say don’t wash your fruits and vegetables. Do wash your fruits and vegetables, but that’s not enough in this case. Um, but yeah, in an, in a normal world, we would know by now what it was, and nobody knows what’s safe to eat, and that’s what happens when you pull those pieces out of the Jenga tower.

Dan: Yeah. And again, like, a week from now when we publish this, who knows what we’ll know, who knows what we’ll be eating. But it seems symbolic.

Julie Rovner: Yeah, I think one of the things that’s going on, you know, last year when we had sort of DOGE cutting and, you know, there were headlines everywhere, and this, these many people were being laid off, and these many people were taking early buyouts and, you know, there was, there was all of this sort of coverage if you will, of all of these cuts.

Things are still not happening, and things are still getting cut, and it’s much quieter. You know, money that officials promised would get distributed as Congress ordered, um, is not getting distributed as Congress ordered. 

So, you know, there are people who are waiting for grants that have not come. Things are still getting cut. Um, political appointees are still making decisions that often, that in the past were always made by career professional scientists, um, doctors, um, people with long experience. As we know, we’ve seen large cuts at a lot of these agencies, so there’s a lot of expertise that’s walked out the door.

So even if there are people still there, they don’t necessarily know as much as they used to. Um, things are sort of going on at that lower level that are not making headlines, but that are still, for the people who are involved in them, or at least what they tell me, are not great.

Dan: Yeah. And what are you seeing play out as a result of the cuts that we’ve seen so far? Like, what are you hearing about that I – like, what do I not know that my neighbors might be experiencing, but I just don’t happen to be hearing about?

Julie Rovner: What you don’t know is how many people are not getting needed medical care because they can’t afford it, whether because they lost their subsidies for the Affordable Care Act and they couldn’t continue to afford their insurance, or in even more cases, their subsidies went down and they bought down into less generous policies and now they have, you know, five-figure deductibles, and so they have insurance, but they still can’t afford to get care.

Or they may be legal immigrants who lost their eligibility for health insurance that they used to have, um, or they may be part of a mixed-status family that dropped insurance because they were afraid of getting targeted by immigration authorities even though, you know, some, some people in the family, were perfectly eligible for these programs.

And we have seen states that are starting to cut back on Medicaid in anticipation of some of these federal cuts that mostly take effect next January, but that are starting to take effect in states already. 

Adam Atchison: Some individual caregivers in Colorado are about to see their Medicaid funding cut.

Michael Perchick: Tonight, the major question remains what can North Carolina do to make up for that major funding shortfall? 

Justin Corr: One of the biggest issues we knew the Idaho Legislature would debate this year. Now Medicaid cuts are moving forward.

Julie Rovner: And we’re seeing states that are cutting back on optional programs, which, you know, members of Congress last year when they were debating this bill said, “Oh, we’re not gonna go after people, you know, who are seniors or who have disabilities.”

Um, except those are the programs that are optional, and when states have to roll back their Medicaid programs, that’s what they roll back, and indeed, that’s what’s happening, and we’re seeing, you know, story after story. But again, these are happening a little more quietly, making fewer headlines. But for the people they’re hurting, they are really hurting.

Dan: Wow. Yeah, I mean, a couple of stories that I, you know, you’re reminding me of, right, that, um, new federal rules keep rolling out, and some of them include eligibility for Medicaid for, like, people giving care or, or what it means to be medically frail and not be able to work, right? Tightening those restrictions and saying, “Look, it’s, you’re gonna have to jump through a lot more hoops to prove that you can’t work.”

Julie Rovner: Yeah, almost all of these rules are being … Those are not finalized yet, but almost all of these rules are also being challenged in court, um, by states, by, uh, healthcare providers, who obviously wouldn’t get paid anymore for providing this care, um, and by patients. So we will see, you know, how these ultimately play out.

But there are, you know, a — this administration has been sort of cut first, answer questions later. That’s been kind of the theme from the beginning, and that is still what’s going on. You know, one of the things we’re gonna talk about, um, on our podcast this week, uh, are stories of family caregivers, people who are losing eligibility for their families, uh, to help take care of them. You know, and, uh, Dr. Oz, who’s the head of Medicare and Medicaid, you know, has been talking about people who are, you know, collecting money for, you know, going to the grocery store or bringing in the newspaper…

Dr. Oz: Something called personal care services. You’ve never heard of that. Personal care services, basically, you’re paying your kids to carry the groceries upstairs, but you’re not actually paying. The state’s paying, and then the federal government’s paying the state back.

Julie Rovner: That’s not what these people are doing. These are people who are changing feeding tubes and, you know, helping people who are not ambulatory in and out of bed and on and off the toilet. I mean, this is … these are very, very difficult jobs, um, that, yes, sometimes family members are paid to do, but if they make it impossible, a lot of these people don’t know where they’re going to get help, and in some cases, these patients are gonna end up in institutions, and that’s gonna end up costing the federal government and taxpayers even more money in the long run.

Dan: And, and these cutoffs are happening now? 

Julie Rovner: They are. 

Dan: Like, folks are, folks are getting notices or being told, like, “No, your check for taking care of mom isn’t coming this week. You’re not getting that.”

Julie Rovner: That’s exactly what’s going on. In, in, in my home state of Maryland, they are cutting off this program. I believe… I can’t remember the exact date. It may be, there may be another month or so, but it’s, you know, they are getting notices that these programs are ending and I think Maryland is one of a half a dozen states that’s doing that.

Dan: Wow. And it’s, it’s like you said, these huge stories, they’re not grabbing a lot of headlines. I mean, like recently on your show, you were like, “What was shocking last year is now kind of status quo,” like at least in terms of media attention. But you’re still tracking all of it. 

And, all this reminded me of what you said when I talked with you the first time last year. So our Zoom meeting started, we started rolling tape. I said, “How are you?” And this is what you said:

Julie Rovner: I have a shirt that says, “Up and not crying.” I also have a shirt that says, “This is not normal.”

Dan: And I wanted to ask you, like, how are you doing now? Are y- d- are those shirts still in your wardrobe?

Julie Rovner: They are, and I have another one that says, “This is my living in unprecedented times shirt.” And I kind of rotate them.

Dan: And, and how, because many of us have the option, I always figured I did, of like, “Yeah, I’m gonna, I’m gonna titrate my exposure to news. I’m gonna calibrate, like this is how much I, you know, is good for me, is healthy for me to have right now.” And you know, some people turn it off altogether. And you do not have that option, unless you choose to do something entirely different. But like, I wanna ask you personally, like what is that like for you? 

Julie Rovner: It’s exhausting. 

Dan: Yeah.

Julie Rovner: I mean, I, and I worry. I worry about people, um, who need healthcare and aren’t getting it. I worry about students who, um, are trying to decide whether they can actually pursue their dreams of becoming a healthcare practitioner or a scientific researcher who are seeing sort of their pipelines cut off. That’s, that’s a big concern for me right now.

And I see things like Ben Sasse, the former senator who was very near death from pancreatic cancer, suddenly being able to take a new drug. And he said that, you know, his cancer is 99% gone. I mean, you see these medical breakthroughs that frankly government-sponsored research has helped bring to us, um, and I worry about whether they’re gonna be there for the next generation.

I mean, that’s something that’s, that’s really sort of jumping out at me. It’s like, look at all the things that we can do. Do you know why we’ve been able to do this? We’ve had this bipartisan agreement that investing in science and medicine is a good thing. That’s separate and apart from the fact that our healthcare system is messed up and costs too much, which I know is what you concentrate on – thank you very much. Um, but, you know, both of them are in trouble right now. And as I say, it’s not so much … You know, last year it was all the headlines. Now it’s just sort of, as I said, it’s kind of become the status quo that things are crumbling, and that worries me even more than when it was all over the headlines.

Dan: Coming up, I get Julie’s take on what’s happening to the Affordable Care Act and what she thinks is gonna happen in 2028 and beyond. That’s next

Dan: This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health issues in America.

The folks at KFF Health News are amazing journalists like, you know, today’s guest, Julie Rovner. Their work wins all kinds of awards every year, and we are honored to work with them

Dan: So, Julie, you know, since the last time we talked, as you noted: some Obamacare subsidies ended, and premiums went through the roof. Millions of people have dropped their insurance. And lots have signed up for cheaper plans that cover less.

And now, the Trump administration has been rewriting the rules for next year to encourage more people to sign up for plans that would cover a lot less, like including plans that require you to spend $30,000 or more to cover your family before insurance kicks in at all. And, you know, like, the two pillars of the Affordable Care Act were, like, let’s use subsidies to make non-crummy private insurance affordable for most people, and let’s expand Medicaid.

So, Republicans kept saying they just wanted to repeal the ACA, but, you know, they never did. And now I’m wondering, like, are we seeing something that’s, like, effectively kind of a slow motion repeal of the ACA by other means?

Julie Rovner: Oh, absolutely. No question about it. Um, most of the Affordable Care Act has been dismantled over, you know, th- th- this was … Several people have written this story. It’s like, you know, Republicans failed on their repeal and replace when they called it repeal. But basically, over the last 10 years, look at all the things we’ve taken away.

All the taxes that supported the financing of this have gone away. So the supporting taxes which were on mostly individ- you know, they were on health insurers, and drug companies, and, and large businesses, most of those have been, have gone away. Thank you lobbyists, you know, who came and said, “We don’t wanna pay these taxes.” Um, so basically the money’s just coming out of the treasury now. 

The- one of the things that the Republican budget bill did last year um, it didn’t roll back the explicit, expansion of Medicaid, but now we’re gonna have these work requirements, which, what we know from other states that have done work requirements end up, yes, taking off people who are, who simply refuse to work, but also because of the bureaucracy involved, end up cutting off people who are working, and who are eligible, and who do need the, the health insurance coverage. We have seen this.

You know, most of the people who end up getting kicked off the program get kicked off for what are called administrative reasons, which means they just could not navigate all of the required paperwork and bureaucracy. Um, so I mean, we really are seeing a slow motion repeal of the Affordable Care Act.

Dan: And so what might happen? I mean, Like, you’ve been looking at this for 40 years, and I’m, I am old enough to remember as a young person noticing that, like, when Bill Clinton ran for president in the early 1990s, you know, a big piece of the pitch was like, “Healthcare costs too much. Not enough people have insurance. We gotta do something about it.” And it, you know, they weren’t able to pass a law. But where might things go?

Julie Rovner: So let me tell you one of the things that kind of freaks me out. Um, would, and you go back to sort of the Affordable Care Act. I covered the Clinton health plan, and it- it died, as I like to describe, because, you know, everybody, all of those special interests wanted to cut off just one finger of it, and in the end, the patient bled to death. That’s sort of been my go-to metaphor for the Clinton healthcare plan. 

So what happened when they tried to put together the Obama healthcare plan is it like- like rather than have all of the special interest outside of the tent, let’s get all the special interest into the tent, and one of the ways they did that is said, “Look, if more people are insured, then you’re gonna get more of your bills paid.”

And particularly, you know, the hospitals and the drug companies said, “Yeah, that sounds good. We would like people to be able to pay for the things that we provide.” Um, well, so what are we doing now? We’re taking this apart, and we’re having people not be able to pay for things, and we’re having states not be able to pay for things.

States had used what was called creative financing for their portion of Medicaid, which remember, is a shared expense between the federal government and the states. So now you’ve got hospitals freaking out, and you also … I mean, we’re seeing hospitals close. It starts with rural hospitals. But, you know, I- I like to say it’s not just people without insurance who are gonna be impacted by this.

If health providers can no longer keep their doors open, then even if you have insurance, you may not have any place to go to get it. We’re already seeing healthcare deserts in, you know, less populated parts of the country. What is this gonna do when you see fewer people with health insurance, fewer people with Medicaid, fewer people with the Affordable Care Act?

Dan: Umm. Wow. 

Julie Rovner: Sorry, I’m just a continuing ray of sunshine.

Dan: No, no, no. No, no, you’re, you’re like– I’m asking you what might happen, you’re like, “Well, here’s the worst that might happen.” But, um, you know, what might a path look like to changing course?

Julie Rovner: Well, I feel like, you know, and when it comes to healthcare, the left is moving to the left and the right is moving to the right. Um, you know, we’ve always in, in the 40 years I’ve been doing this, um, and even going back to things like Medicare in 1965, what has gotten things done is when people, is when the two sides come together in a compromise. Those are the only big achievements in healthcare. Um, with the possible exception of the Affordable Care Act, which Republicans say, you know, “Oh, that wasn’t, you know, that w- that was only, that passed only with Democratic votes,” but it was a Republican idea. It was pulled from what Mitt Romney did in Massachusetts in 2006. So it was intended as a compromise, um, even if in the end the Republicans … The Republicans started moving right, I think, before the Democrats started moving left. 

But now you’re seeing, you know, most of the Democratic candidates, I’m looking in the midterms, you know, are, are back to the mantra of Medicare for All. Joe Biden was one of the few candidates in 2020 who did not endorse Medicare for All. He wanted to just expand the Affordable Care Act. That’s what was seen as a middle ground. 

Now nobody seems to want a middle ground. You know, the right wants to just take everything apart and get government out of healthcare in general and let people, you know, sort of give people a little bit of money and have them, you know, have the free market take over. And the left wants Medicare for All, which is, you know, the, the U.S. has tried to, to do what every other country has done and have universal coverage, and has so far not really succeeded at that. Although I will say at its peak, the, when the Affordable Care Act had the expanded subsidies, we were down to about an 8% uninsurance rate, which was the lowest since anybody had been keeping track. So it was, it was getting closer. 

Um, but now I see the parties moving apart. Will they move back together again at some point? I don’t know. Um, but, but for, I think, the immediate future, we’re seeing them retreat to their corners. And in healthcare that really, even though sometimes at the 30,000-foot level they’ve been fighting about that, at the 5,000-foot level they’ve been able to get together and do things. Um, a good example is the No Surprises Act, you know, the let’s get rid of surprise bills. 

Um, I’m not sure I even see them coming together on sort of the little stuff right now. Everybody is just very, very, very unhappy with everybody else.

Dan: Wow. Well. Okay. Uh, it’s not the cheerfulest thing I ever

Julie Rovner: You look like you’re, you’re processing that.

Dan: I am. I am. I am. I am. And of course, you know, as you say, during this period when people had, when the, the greatest proportion of people had insurance, uh, you know, I’m still doing this show. I mean, people have insurance, but having insurance doesn’t necessarily mean you have healthcare that you need and can afford.

Julie Rovner: Yes, everything. We will both be employed for as long as we want talking about the foibles of the U.S. healthcare system.

Dan: I mean…

Julie Rovner: That I am con- that prediction I am very confident of

Dan: I will never run out of material – that’s the crappy thing. But things are, like we said, they’re accelerating, they’re different, and I’m wondering how is all this changing how you see your job going forward?

Julie Rovner: Well, one thing that I’m, working towards myself, is I am predicting that we are going to have another major political throw down over healthcare in the coming years. Not necessarily next year, but probably, you know, the … I think this will be a big focus of the 2028 presidential campaign, and in 2029 we’re gonna have a big debate.

Are we gonna solve anything? I have no idea. But in preparation for that debate, I feel like there’s a whole generation that sort of didn’t live through the Clinton health plan, and that didn’t even live through the fight over the Affordable Care Act, and that one of the things that I would like to do as sort of a public service, um, is throw all of the options back on the table for people to see that, you know, that if this was easy, we would’ve solved it a long time ago. 

So I am … One of the things that we’re doing as part of our podcast is a special project called How Would You Fix It? I am sort of calling every smart person I know from across the ideological spectrum and asking them, “Okay, how would you fix it?”

I mean, I’m nearing retirement myself. I feel like I have this obligation to kind of, you know, shepherd the people who wanna learn through another round of this, um, so that we can have an educated debate and decide what we as a society wanna do about healthcare.

Dan: Wow. You think there will be a great big conversation, there will be a great big change. 

Julie Rovner: Uh, I think there will be a great big conversation. I don’t know that I think there will be great big change. I’ve, I’ve, I have covered enough of unsuccessful ones of these. I, I am not predicting its success, I am simply predicting the fight.

Dan: Fair, fair, fair. But, uh, even so, um, having a big public conversation seems better than not. 

Julie Rovner: As a journalist, I would think that. As somebody, and who’s … As somebody who cares about the, the, the sorry state of our healthcare system, I, I think it would be — I think it’s time.

Frankly, one of the reasons I think this is about to happen is that when in the early 2000s, when we were sort of building up to the fight over the Affordable Care Act, you could sort of see it coming because everybody was unhappy, and everybody wanted to sue for peace.

Um, you know, that the, the hospitals were unhappy, the drug companies were unhappy, the doctors were unhappy. You know, the, the employers were unhappy. The labor unions were unhappy. I feel like that is true again, and it’s more true.

And now even the haves, what we call them, the people who have insurance and don’t want, you know, are afraid of change, even the haves are unhappy. Everybody thinks they’re paying too much, which is why I’m predicting we’re gonna have another big public debate about this in the next four or five years.

Dan: I think the prospect of having a big public debate about a big public problem also strikes me as like an optimistic stance for anyone who cares about, you know, living in a democracy where people have a say in, in democracy where people have a say in what happens.  

Julie Rovner: It is, I, I’m sort of clinging to it as a, as a hope

Dan: Mm-hmm. I, uh, I just really appreciate that.

Julie Rovner, thank you so much for joining me. It’s been such a pleasure. Um, till next time, I’ll be listening to “How Did You Fix It?”

Julie Rovner: Thank you, Dan. And see, talking to you makes me feel better.

Dan: All right. That’s what I’m going for. That’s what I’m going for. Let, let’s stay in touch. 

Julie Rovner: We will. 

Dan: All right. Great. Take care. 

Julie Rovner: Thanks, Dan. 

Dan: Bye-bye. 

Dan: Okay, so I asked Julie Rovner how the avalanche of change has her thinking about her job description these days, and I wanna share how I’ve been thinking about mine.

You might have noticed over the last couple of months we’ve taken a break from producing podcast episodes, and here’s why. Basically, in April a few family health issues blossomed all at once. And as I turned my attention there, I realized I had some health issues of my own that needed attention. 

I started making this show eight years ago. I’ve been running it on a shoestring ever since, and that has meant running myself a little ragged sometimes. Honestly, too often and for too long. That’s not good for my health, and it’s not good for An Arm and a Leg, ’cause a ragged version of me does not make the best version of this show.

I needed some time just to break some habits — I called it detox from workaholism — and I needed to attend to my own health.

Like, earlier this year, I’d scheduled a little surgery, and I put it off ’cause I got sick from — you guessed it — running myself so ragged. And of course I was still trying to run so hard, I couldn’t imagine when I might reschedule it. So honestly, it wasn’t until I put myself on break for a minute that I even thought, “Oh yeah, I, I could do that surgery now.”

So surgery happened in early June. I’m all healed up, and I’ve been working with a really excellent therapist, and I’ve been incredibly grateful to my colleagues for their patience and for keeping things running. And together, we are starting to put together some new ways of doing things. It’s gonna be a work in progress.

There are so many things we wanna do. But I can’t be a workaholic anymore. So for our next episode, we’re gonna bring back one more favorite from our archives, give ourselves a running start, and then we’ve got some incredible, important stories and projects we just can’t wait to get back to. For now, thank you so much for sticking with us. It is a privilege to get to do this work, make this show for you, and to work with my incredible colleagues.

I will catch you soon. Till then let’s all take care of ourselves.

This episode of An Arm and a Leg was produced by Emily Pisacreta, with help from our summer intern, Lynn Barbera (welcome, Lynn!) — and edited by Ellen Weiss. 

Adam Raymonda is our audio wizard.

Our music is by Dave Weiner and Blue Dot Sessions. 

Claire Davenport is our engagement producer.

Amanda Boyd is our Operations Manager. Bea Bosco is our consulting director of operations. 

An Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in-depth journalism about health issues in America and a core program at KFF, an independent source of health policy research, polling, and journalism.

Zach Dyer is senior audio producer at KFF Health News. He’s editorial liaison to this show.

An Arm and a Leg is distributed by KUOW, Seattle’s NPR news station.

And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor.

They allow us to accept tax-exempt donations. You can learn more about INN at INN.org.

Finally, thank you to everybody who supports this show financially.

You can join in any time at arm and a leg show, dot com, slash: support.

An Arm and a Leg is a co-production of KFF Health News and Public Road Productions.

For more from the team at An Arm and a Leg, subscribe to its weekly newsletter, First Aid Kit. You can also follow the show on Facebook, Instagram, LinkedIn, and Bluesky. And if you’ve got stories to tell about the healthcare system, the producers would love to hear from you.

To hear all KFF Health News podcasts, click here.

And subscribe to An Arm and a Leg on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

The Trump administration credits its fraud control efforts for the disappearance of millions of people from Obamacare rolls rather than a sharp rise in premiums — a claim disputed by policy experts that glosses over the reality that many more Americans now find themselves without health insurance.

Enrollment in Affordable Care Act plans fell by nearly 3 million this year to about 19.2 million, following steep premium increases by insurers and the Republican-led Congress’ unwillingness to extend more generous premium subsidies. On average, ACA customers pay $178 a month in premium payments this year, a 58% increase from 2025, according to KFF, while their deductibles — the amount consumers must pay annually before insurers pick up their share — have climbed 37% to nearly $3,800 a year.

“These are real people who are now forced to make impossible choices,” said Annalyse Keller, a spokesperson for Keep Americans Covered, a large coalition of lobby organizations for the healthcare industry, including insurers and patient advocacy groups.

But a Department of Health and Human Services report released in June, written mostly by President Donald Trump’s political appointees and allies, asserts that 5.6 million people were fraudulently enrolled in ACA plans in 2025, and that the Trump administration removed 2.9 million of them — the same number as the 2026 drop in enrollment.

There’s little dispute that the ACA suffers from some fraud, as do most government programs. The administration said it has taken actions to tighten the enrollment process to thwart brokers who fraudulently enroll people without their knowledge.

For example, the administration in August 2025 halted a Biden-era initiative that allowed low-income people to sign up for coverage year-round. Regulators also have removed 1.5 million people since 2025 for reasons such as not meeting a requirement to file their taxes over two years or being concurrently enrolled in another health program, such as Medicaid, which is not allowed.

But health policy experts say that the administration is overstating the extent of ACA fraud and that the HHS report relies on debatable assumptions, such as that all sign-ups under the year-round enrollment program for low-income people were potentially fraudulent. ACA enrollment fell off a cliff because of escalating prices for insurance plans, policy analysts say, which the administration’s done nothing to stem.

“The top-level claim” that all the decline in enrollment since 2025 is because of improper or fraudulent enrollees leaving the market “is not remotely credible,” said Matthew Fiedler, a senior fellow at the Brookings Institution. “We know that lots of people have seen higher premiums, and there’s really good evidence that when premiums go up, people drop coverage.”

Healthcare costs are a big concern for voters ahead of November’s midterm elections, and both Democrats and Republicans are trying to spin the issue to their advantage. Democrats argue more needs to be done to make insurance less expensive for consumers, while Republicans are trying to focus on the need to save taxpayer dollars from fraud.

A recent KFF poll found that voters trust Democrats over Republicans to address healthcare costs (37% vs. 26%). The poll also found, though, that 55% of Republican voters consider it extremely important for candidates to address healthcare fraud, more than any other issue, showing that the White House’s effort to shift focus from costs has had some success with its own supporters.

But Jonathan Oberlander, a professor of health policy and management at the University of North Carolina, questioned whether the fraud narrative will hold up as voters continue to struggle with rising costs.

“It will be cold comfort to the very real persons who could no longer afford coverage and dropped their plans,” he said in an email to KFF Health News.

How We Got Here

Under President Joe Biden, Congress passed a law that included more generous tax subsidies for people enrolled in Obamacare, starting in 2021. Those enhanced subsidies lowered premium payments, with millions qualifying for a large enough tax credit to reduce their monthly payment to zero. The Biden-era law also allowed wealthier households to get assistance.

ACA coverage essentially doubled, from just over 11 million Americans in 2021 to more than 22 million in 2025, according to the HHS report.

Republicans and conservative groups argue that the growth wasn’t driven only by people newly enrolling because of lower premiums. Instead, they say, the enhanced subsidies, along with other Biden-era policies — including easing income verification requirements for some enrollees — invited fraud. Unscrupulous, commission-seeking insurance brokers found it easier to sign people up for coverage, often without their knowledge, while ordinary consumers could more easily fudge their income and qualify for the largest subsidy possible.

The conservative Paragon Health Institute’s president, Brian Blase, wrote in a recent webpost that the HHS report’s conclusion on the scope of improper enrollment is likely an undercount. He remains unconvinced by the arguments that rising premiums are to blame for the sharp drop in ACA enrollment, saying subsidies remain generous for many people.

The Administration’s Current Targets

The debate will continue as more enrollment data emerges from the federal marketplace and the exchanges run by states. Some policy experts — including the consulting group Wakely — expect the year to end with the number of ACA policyholders down by as much as 26% from last year.

Trump’s regulators will likely connect further drops with anti-fraud efforts. The HHS report alleges there are potentially millions more who remain improperly enrolled. The report’s authors noted that some of the administration’s anti-fraud proposals have been blocked by court rulings.

In a video HHS released June 27, HHS Secretary Robert F. Kennedy Jr. pats Mehmet Oz, the head of the Centers for Medicare & Medicaid Services, on the back for the number of canceled ACA plans so far. Oz threatens potential ACA hucksters: “Don’t walk away from us, run! Because we are going to find you.”

In an email responding to KFF Health News’ questions, CMS spokesperson Christopher Krepich said his agency this summer will block ACA applications made by brokers that lack a Social Security number. By open enrollment this fall, CMS plans to require more identify-proofing when brokers enroll people and will limit a broker’s access to accounts until that person “has been authorized by the consumer to work on their behalf.”

How some suspicious enrollments will be removed is spelled out in emails sent in June to insurance carriers and obtained by KFF Health News.

CMS told insurers that the agency will send them files for ACA accounts it believes are potentially unauthorized. Each flagged consumer account will have used a sales broker to enroll, be in a zero-premium plan, and lack a Social Security or an immigration documentation number — which Kennedy said in the video is a glaring sign of fraud.

Insurers must try to contact the enrollees to verify that they signed up for coverage. After 60 days, insurers must report policies they were unable to verify to CMS, which will cancel them.

Krepich wrote that carriers are cooperating with efforts to investigate accounts with missing or unverified information.

Policy experts, including Fiedler, note that the absence of a Social Security number doesn’t automatically prove fraud. While it could indicate a fake enrollee, a missing Social Security number might also be a simple oversight by the consumer or their broker, for example, or a newborn added to a parent’s account at birth, before they’ve received a number.

“That the administration put it in a report and did not summarily terminate these enrollments suggests they believe there is some mix of different circumstances,” Fiedler said.

The administration report singles out another segment of enrollments as suspicious: very low-income, subsidy-eligible people who shifted to plans that carry no monthly premium, suggesting “fraudulent agents and brokers are moving them to keep gaining commissions and avoid detection.” The report also cites ACA enrollees who file no medical claims as suspicious.

Policy experts question the assumptions behind those concerns.

Younger or lower-income people use healthcare less often, for example, which can explain why they may make no claims — particularly when they must first spend thousands of dollars out-of-pocket to meet high deductibles.

And very low-income people may switch to plans with higher deductibles in exchange for making no premium payment because they struggle to come up with the $50 or $80 monthly share that other plans might require.

“People are hurting for money,” said Florida insurance agent Jason Fine. “I literally have people who can’t afford to pay $15. I would not immediately assume that a person who went from a silver plan to a bronze plan, that it’s fraud,” referring to two types of ACA plans.

Fine said the administration needs to focus on better enforcement of existing rules, saying he has reported to regulators dozens of unscrupulous agents who have switched clients without authorization, yet none were barred from selling ACA policies.

He and other agents continue to push for adding multifactor identification, as banks and other financial institutions use, to the federal ACA marketplace. Some states that run their own exchanges have two-factor authentication or other types of ID verification and have not reported problems with unauthorized switching.

CMS — under both Biden and Trump — has not added two-factor authentication to the federal marketplace, healthcare.gov.

Rep. Glenn Grothman (R-Wis.) introduced legislation to require it in June, but its prospects are murky.

“It will help reduce fraud,” said Ronnell Nolan, who leads Health Agents for America, a lobbying group that has long urged CMS to add the feature. Grothman’s legislation, she said, might “encourage CMS to do it themselves.”

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Amanda DeSimone-Shabrack relies on a home healthcare aide to help her high-needs autistic 12-year-old son. Virginia’s Medicaid program covers the assistance, enabling her to work as both an education technology specialist and a professor, run errands, and keep Mason in the home.

That could change. In June, the Department of Justice issued a legal opinion saying federal disability rights laws don’t require states to provide services that allow people with disabilities to remain in their homes rather than institutions.

It’s a sharp reversal from 1999, when a landmark Supreme Court ruling held that unjustified institutionalization constituted discrimination under the Americans with Disabilities Act. Previous administrations have relied on that ruling to enforce civil rights for disabled people, but the Trump administration says that long-held interpretation is wrong.

Advocacy groups say legal protections for about 40 million adults and 5 million children who have disabilities could be undermined, and they worry that the new interpretation may herald a return to forced institutionalization.

The stage is also now set for a legal fight between advocates, states, and the federal government. Some states with ongoing lawsuits challenging disability rights requirements are already citing the DOJ opinion in hopes it will help them prevail.

In a case in Texas, for example, some Republican-led states are arguing that a rule instituting a 1973 civil rights law that led to community and home integration of people with disabilities is costly and infringes on states’ rights.

People like DeSimone-Shabrack are especially worried because, they say, the opinion follows a spate of White House and Republican-led initiatives that have already begun eroding hard-won protections for people with disabilities.

“I’m worried. Am I going to have to put him in an institution, and what’s that going to be like for him?” said DeSimone-Shabrack, whose personal home care help was recently reduced from 30 to 18 hours a week by the state. “As he gets older, am I going to be able to care for him without this support?”

The Department of Health and Human Services remains steadfast in enforcing federal civil rights laws, agency spokesperson Emily Hilliard said in an email.

“Our commitment to ensuring that individuals with disabilities are treated with dignity, afforded equal opportunity, and are able to meaningfully access community services remains unchanged,” she said.

But advocacy groups say the DOJ opinion could have sweeping repercussions. The opinion doesn’t change existing law, but advocates worry that HHS and the DOJ could begin rescinding guidance and regulations that mandate integration for people with disabilities.

They’re concerned that agencies will stop enforcing disability laws that ensure people aren’t unnecessarily institutionalized. HHS, for example, has historically investigated disability discrimination claims at hospitals and in states that get federal funding, enforcing compliance with home and community integration through voluntary agreements. Disability rights experts say those agreements could now be imperiled.

And some states facing financial pressures may roll back Medicaid services that enable people with disabilities to stay in their homes and communities — a trend that’s already happening following last year’s passage of the One Big Beautiful Bill Act, which cuts a projected $900 billion-plus from the safety net program over a decade.

Democrats are seizing on the opinion, which was released in a DOJ memo, to portray President Donald Trump and Republicans as a threat to people with disabilities. Sen. Tammy Duckworth (D-Ill.) and other Senate Democrats led the introduction of a resolution calling on the DOJ to rescind the opinion.

“The Trump Administration’s memo is an outrageous attack on the rights and independence of the disability community,” Duckworth said in a statement.

The DOJ didn’t return emails seeking comment.

According to the DOJ’s interpretation, regulations that give disabled people the right to demand certain services for daily living — bathing, mental health counseling, and financial budgeting help, for instance — and that require states to extend community-based services to mentally disabled individuals are unlawful, a view the agency acknowledged “is out of step with the common understanding of that decision within the federal courts.”

States may have legitimate reason to treat mentally disabled people in institutions, “including resource constraints, capacity limitations in community-based facilities, and safety concerns for both the patient and the community,” the memo reads.

The Supreme Court case, Olmstead v. L.C., has long shaped federal policy. And while it remains to be seen how courts will respond to the DOJ, some states seeking to curtail disability protections see the opinion as significant.

Consider the 2024 lawsuit in federal court in the Northern District of Texas by Republican-led states arguing that an HHS rule about the integration mandate is unlawful. The lawsuit began with broader claims and 17 state plaintiffs. Following significant advocacy from the disability community, only Texas, Alaska, and Florida remain.

Following the new DOJ interpretation, the states filed documentation to inform the court about the memo as a new and relevant development. Similar documentation citing the memo has been filed in disability rights cases in Florida and New Hampshire, according to The Arc of the United States, a disability advocacy group.

Advocates for people with disabilities say the speed at which plaintiffs are citing the opinion underscores how it may be used to justify the erosion of protections.

“The administration’s attempt to dismantle decades of progress in community integration is alarming and inconsistent with federal disability rights laws and Supreme Court precedent as well as the critical enforcement work of prior administrations,” said Shira Wakschlag, senior executive officer of legal advocacy and general counsel at The Arc.

Forced institutionalization led to human rights violations, segregation, and a eugenics movement in the late 19th and early 20th centuries that included involuntary sterilization.

Exposure of the abuses, legal battles, and an independent living movement caused a major shift toward integration. Fewer than 1% of people with intellectual or developmental disabilities lived in state-run facilities in 2021, down from almost 30% in 1967, according to data from the University of Minnesota’s Residential Information Systems Project, which maintains metrics on such long-term services and supports.

The Trump administration has already taken steps to reverse that trend, advocates say.

Trump signed an executive order last year that addresses homelessness by expanding involuntary treatment and institutionalization, reversing a “housing first” approach championed by the Biden administration.

Much of the special education program office is moving from the Department of Education to HHS, raising concerns among advocates that the administration is reverting to a view that disabilities are a medical issue to be fixed rather than differences that can be accommodated.

And cuts in federal funding for Medicaid, a federal-state insurance program for people with low incomes or disabilities, also portend fewer resources and services. States have responded by reducing some optional benefits such as home health aides and support. In addition, qualifying for an exemption from the program’s work requirements, which take effect Jan. 1 in most states, will pose significant hurdles for people with disabilities.

The June DOJ opinion, advocates say, could accelerate the shift and result in court rulings that chip away at disability rights.

“While it doesn’t overnight change the law, it’s very troubling and very dangerous,” said Zoe Brennan-Krohn, director of the Disability Rights Program at the American Civil Liberties Union. “It reflects a really deeply held disrespect for disabled people from this administration and a total lack of awareness of the lived experiences of people with disabilities who are living in their homes.”

Data shows there can be benefits to involuntary institutionalization. Relative to those voluntarily admitted, people with psychiatric illness who were involuntarily admitted “experienced greater improvements in symptoms and function,” according to a September 2024 review in Psychiatry, Psychology and Law, a peer-reviewed academic journal.

Deinstitutionalization has created new challenges. More hospitals have been forced to board people with psychiatric illness in emergency rooms because of a dearth of available beds. And moving people into home- and community-based living was supposed to be accompanied by an increase in outpatient care and treatment that never materialized, creating gaps in support.

But advocates for the disabled community say involuntary institutionalization strips people of their autonomy and poses a higher risk of neglect and abuse.

Jennifer Kucera, 57, of Cleveland, spent two years in a nursing home. She has spinal muscular atrophy, a genetic disease that kills motor neurons, leaving her able to move only part of her left arm and her head.

At the institution, she said, she felt bored and trapped and developed intense itching from scabies, which is caused by microscopic mites.

For more than a decade, however, she has lived in an apartment with the help of caregivers who come in the morning to get her dressed and ready and return to put her to bed. She works at a disability rights group, and her care is covered by Medicaid.

“The two years I lived in the nursing home, it was the most horrible time in my life,” said Kucera, who worries about the DOJ opinion on Olmstead. “My future is a shaking floor beneath me. With the stroke of a pen, they could get rid of everything I’ve built for myself.”

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

This article first appeared on KFF Health News and is republished here under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.