Transparency “is really important to help protect the integrity of the program, ensure funds are reaching the communities they’re meant to serve,” said Maya Sandalow, director of health policy for the Bipartisan Policy Center, a nonprofit think tank.

The federal government and states are compelled by public records laws to share documents when requested. But those requests can take months to fulfill, making their release too late for meaningful oversight as states rush to spend their allotments under tight federal deadlines.

In the meantime, the Centers for Medicare & Medicaid Services — which oversees the Rural Health Transformation Program — and some states aren’t proactively sharing information about where the funding is going and how it will be used.

CMS spokesperson Timothy Foster said the agency “will publish an annual report on state progress.”

States’ individual reports to CMS are “intended to be” shared upon request, but the agency won’t be proactively publishing the individual state reports, according to a CMS document.

Foster didn’t respond to questions about whether the agency will share examples of projects that are and aren’t working or create a tracker of funding recipients, award amounts, and what organizations plan to do with their funding — ideas that health and government transparency advocates have requested.

Instead, much of the program’s transparency thus far has been up to state governments, and “the level of details that states have publicized really varies,” said Sandalow, who co-wrote a on how the federal government can strengthen the rural health program, including through transparency.

Some states are sharing information with lawmakers, holding public meetings, and explaining where organizations plan to invest their money.

Others are more secretive, with multiple states declining to release public records in response to ³Ô¹Ï²»´òìÈ’ requests. Mississippi’s governor , West Virginia holds closed-door advisory meetings, and a South Dakota official wrote that he hoped CMS would keep its application from public view.

“I just don’t believe in all this secrecy,” said Mississippi state Sen. Hob Bryan, who chairs his chamber’s public health committee. “If they’re not up to something nefarious, why do they have to do it all in secret?”

Bryan, a Democrat, said there’s about the lack of transparency in his state.

Reaching Rural Patients

Congressional Republicans created the five-year Rural Health Transformation Program last summer as an eleventh-hour sweetener to President Donald Trump’s signature One Big Beautiful Bill Act. The money was intended to offset concerns about the anticipated in rural communities from the law, which is expected to by more than $900 billion over a decade.

Sandalow said some states may be struggling to share information since they’re busy rushing to hire staff and meet the program’s tight deadlines, including an annual report due Aug. 31.

In the meantime, a slew of media outlets, nonprofits, and businesses are stepping in to make it easier for the public to track the rural health program.

³Ô¹Ï²»´òìÈ is collecting states’ applications and approved plans and budgets, not all of which have been posted on state websites.

Rural Health Payout

Tracking Applications for Rural Health Transformation Funds

³Ô¹Ï²»´òìÈ is working to collect and post complete application materials, by state, here and will update this repository as new materials, released in response to public records requests, arrive.

Dec. 4, 2025

Rural Health Payout

Tracking State Rural Health Transformation Plans

³Ô¹Ï²»´òìÈ is working to collect and post approved plans as more states respond to emails and public records requests for their documents.

July 27, 2026

And several and have created trackers that , post funding opportunities, or list award recipients. But some resources are available only through paid services, aimed at helping businesses interested in applying for money.

Sandalow said previous federal programs “tend to draw attention for gaps in transparency and oversight rather than for doing it well.”

As an example, she pointed to the lack of oversight and transparency with the CARES Act and other covid relief programs, which saw .

In March, CMS published proposed quarterly and annual state reporting requirements for the rural health program, and a . At least three groups replied with letters expressing concerns about transparency.

CMS should share states’ progress reports, funding recipients, and what organizations plan to do with their awards, , the Bipartisan Policy Center’s vice president for health policy.

Sharing this information would make it easier to track progress, identify successful programs that other states may want to replicate, and “ensure funds reach the rural communities they are intended to serve,” he wrote.

Molly Smith, group vice president for public policy at the American Hospital Association, “to be as detailed as possible” about the “final destinations of these funds, given the complexity of the grant funding process.”

In , Charlene MacDonald, who leads the Federation of American Hospitals, noted that some funding recipients, such as large health systems and academic medical centers, will be distributing their awards to other entities.

CMS should collect those “downstream subrecipients,” wrote MacDonald, whose group represents for-profit hospitals and healthcare systems.

Without this information, she said, it will be difficult to know if “funding is reaching the rural hospitals, providers, and communities primarily intended to benefit from the program.”

It can also be difficult to know which for-profit companies are being paid with rural health money.

For example, and have listed hospitals and other health facilities that received funding to purchase telehealth, scanning devices, and other health technology. But the states list only some of the companies from which recipients will buy those products.

States won’t have to report “downstream” funding in their August reports to CMS but will have to do so for all future reports, according to the agency’s recently finalized .

The CMS documents say states must list subrecipients that receive subawards as well as vendors or contractors paid by an organization using rural health funding. Although states must report how much money these downstream recipients receive, they don’t have to describe which specific services or products the recipient is providing.

DIY Dashboards

As groups ask CMS to share more information, some states have created their own rural health spending dashboards or recipient lists, with varying levels of detail.

Alaska, , and other states list which organizations receive funding, their award amounts, and detailed descriptions of how recipients will spend the money.

and , however, are among the states that don’t share what awardees plan to do with their funding.

New Hampshire is that detail projects and their budgets on its Rural Health Transformation Program website. Some other states have uploaded contracts and grants on general procurement or award databases, which can be difficult to navigate.

, , and have used press releases to announce awards. But the announcements aren’t posted on their Rural Health Transformation Program websites, which could make it difficult to find this information.

Many states created advisory groups to provide transparency and accountability for their programs. Most committees host public meetings and upload minutes, recordings, or other materials from the discussions.

But the West Virginia Department of Health won’t share what’s discussed in its rural health advisory panel’s closed-door meetings, according to spokesperson Gailyn Markham.

“The panel is intended to serve as an informal forum for discussion and feedback among invited participants and program staff,” Markham said.

South Dakota, North Dakota, and Mississippi are among the states without advisory committees.

In response to public records requests, South Dakota released a nearly completely redacted version of its budget for the rural health program while Mississippi declined to release its budget.

Mississippi’s he vetoed a because it would “create an unnecessary layer of bureaucracy” that would have slowed the award process, which could cause the state to lose out on future funds. Mississippi is “ in all this secrecy,” Bryan, the state lawmaker, told ³Ô¹Ï²»´òìÈ.

Sandalow said it’s important for states to publish the impact of their rural health projects, adding that CMS should share which rural health projects are and aren’t working.

She said national and state health organizations are creating networks and holding conferences to help spread this information. States should “be able to learn from each other, get a sense of lessons learned and best practices, and then be able to pivot their initiatives accordingly,” Sandalow said.

Michael Cannon, who oversees health policy studies at the libertarian Cato Institute, said people should know how their $50 billion in taxes is being spent on the rural health program, and whether state projects are making rural patients healthier.

If investors put that much money into a project, there is “no way” they “would let the recipients of those funds get away with the shoddy approach to transparency and accountability that the states are taking,” he said.

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

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

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

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

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

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

‘I Have No Options’

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

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

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

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

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

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

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

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

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

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

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

A Program Intended To Encourage Work

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

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

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

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

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

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

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

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

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

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

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

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

Falling Through the Cracks

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

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

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

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

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

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

This article is from a partnership that includes , , and .

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

Health secretary Robert F. Kennedy Jr. that AI nurses can provide “concierge care” to rural patients. Mehmet Oz, who leads the Centers for Medicare & Medicaid Services, “the best way to help some of these communities is going to be AI-based avatars” that connect rural patients to mental health services.

And many state health leaders agree. They are using some of their funding from the $50 billion federal Rural Health Transformation Program to expand AI among rural health organizations.

AI is computer technology that performs tasks that typically rely on human intelligence by finding patterns or generating words. It has the potential to improve the healthcare system by automating back-office work or identifying patients at risk, but several reports contend there’s little evidence AI can improve access to care and patient health in rural areas. It’s unclear how well states will track and share outcomes of the tech they invest in.

Meanwhile, some rural Americans are skeptical, according to interviews with people in Hot Springs, South Dakota, a city of about 3,400 residents at the southern end of the Black Hills.

“I get artificial intelligence for certain things, but for personal healthcare — no,” Tara Haffner said while standing outside the American Legion.

Haffner said she’s worried about AI making mistakes and wants healthcare to stay between her and her doctor.

But Phillip Mues, who oversees technology at Cherry County Hospital and Clinic in rural Valentine, Nebraska, said AI is already helping clinicians save time, reduce burnout, and focus more on patient care.

“I think it will help reduce burden on actual staffing,” he said. “It won’t replace people, but I think it will help in rural communities.”

Still, Mues said, AI can’t fix every challenge. Rural hospitals at risk of closing or ending certain services probably can’t use AI to save enough money to prevent those consequences, he said.

Congressional Republicans created the five-year Rural Health Transformation Program last summer as a last-minute sweetener to President Donald Trump’s signature One Big Beautiful Bill Act. The funding was intended to offset concerns about the anticipated in rural communities from the law, which is by more than $900 billion over a decade.

The Word on the Street

Hot Springs, which has a 25-bed independent hospital and a Department of Veterans Affairs hospital, is known for its sandstone buildings, veterans’ services, and, yes, hot springs. Residents must drive at least an hour for more advanced care.

Six people interviewed there by ³Ô¹Ï²»´òìÈ said the biggest problem in rural healthcare is the cost or long wait times caused by staffing shortages.

Doug Nikkila, a heavy equipment operator, said AI and other technology come with benefits and risks.

“If it’s not utilized correctly, it becomes a burden,” he said.

Nikkila, who’s concerned about nursing home residents being neglected amid staffing shortages, said he thinks AI should send reminders to staff when their residents are due for diaper changes or other care. He also wondered whether AI-powered video monitors could send alerts when they detect falls or illness symptoms.

The healthcare industry is rapidly adopting AI despite the tools being “poorly evaluated,” according to a , a Stanford- and Harvard-led group that evaluates health-related AI. The report says that while some AI has been successful in controlled settings, there’s less evidence it can perform in the real world. It also said few studies track patient outcomes.

Evidence is especially lacking in rural areas. A found that only 26 peer-reviewed studies about AI in rural healthcare were published from 2010 through April 29, 2025. Few analyzed implementation or outcomes.

Despite the dearth of results, some states appear interested in bold experiments — such as using AI to suggest diagnoses or recommend treatments. Utah officials said in their application to the rural health program that they are interested in funding a in AI-powered prescription refill requests.

Even tools proven to work in urban settings may not work in rural ones, said Qian Huang, an assistant professor at the Center for Rural Health and Research at East Tennessee State University.

She said the technology is usually tested at large, academic hospitals and trained on data from urban patients, who may not have the same health issues and obstacles — such as a lack of transportation — as rural patients.

A ³Ô¹Ï²»´òìÈ review of states’ plans for the Rural Health Transformation Program shows they’re interested in using AI to automate time-consuming, behind-the-scenes tasks, such as medical charting, coding, referrals, and prior authorization requests. Some states also mentioned ways AI can save money, such as Washington, which discussed tools that “identify and recover” money it’s owed.

Mues said the Valentine clinic has been using AI scribes that record appointments and generate notes describing the visit. He said surveys of clinicians before and after they started using the technology show the scribes have helped reduce burnout by letting providers focus on patient care with “eye contact on the patient, not the computer.”

States also mentioned funding AI that directly affects patient care, such as tools that recommend possible diagnoses and treatment options to clinicians. Mississippi wants to use predictive AI algorithms to “guide” emergency medics with “triage, routing, and treatment decisions.”

Several states want to use AI to analyze patients’ medical charts and remote monitoring devices to identify immediate or future health risks. North Dakota’s plans mention AI to “detect early signs of chronic disease and behavioral health conditions,” while New Hampshire’s discusses AI that identifies patients “at high risk of adverse drug events.”

Some states plan to give patients access to chatbots or wearable devices that transmit data to their clinicians. Utah is interested in funding AI-powered fetal-monitoring devices, while Kentucky will explore using AI chatbots to “deliver personalized nudges and education” through “health coaching, gamified incentives, and rewards.”

Whether the technology appeals to consumers is another matter. Hot Springs resident Stephanie Keller wears a smartwatch to track her fitness but has no interest in an AI chatbot using her data to encourage her to reach her health goals.

“I don’t have the time to chat with AI every day. I mean, are you kidding me? I don’t want to spend my time on a cellphone,” she said.

Rural health facilities also face challenges in implementing AI.

Huang, who has AI in rural healthcare, said rural hospitals and clinics may not have the hardware or IT staff needed to support the technology. She said clinicians and staff may already be doing three jobs at once and not have time to go through AI training.

Rural health facilities may not have fast-enough internet to use AI, while patients may have slow connections at home — if they have internet at all — or may not feel comfortable using AI, Huang said.

“In rural communities, trust and a personal relationship is essential,” she said.

Roy Ehlers, a Hot Springs resident, said he doesn’t trust AI in healthcare, or anywhere else.

“I’m old-fashioned. I don’t believe in it. Technology is not my forte,” Ehlers said.

Mues said that while some rural patients are “scared of AI,” most have let their clinicians at the Valentine facility use the scribing technology to record patients’ visits.

Will States Share AI Results?

Despite questions about implementation, the boom is on. Jordan Everson, an assistant professor at the Georgetown University Department of Family Medicine, said both urban and rural health facilities are rushing to use AI.

“The risk of signing contracts that rural healthcare organizations come to regret is pretty high,” said Everson, who previously worked in the information technology office at the U.S. Department of Health and Human Services.

Several states are addressing that risk by using their rural health funding to create groups that will help rural health facilities vet, select, or monitor AI tools while offering training, ongoing assistance, or funding for upfront costs.

CMS spokesperson Timothy Foster said the agency doesn’t have any AI-specific reporting requirements but is working on a form for states to report their overall progress and outcomes.

Abraham Pritzker, who works at Julota, a company that helps health organizations track data, said states should measure more than how often AI programs are used.

For example, states can measure whether the tech reduces falls, 911 calls, or hospital admissions, said Pritzker, a former paramedic. Huang said it’s also important to ask clinicians and patients about their experiences using AI.

Yet many states’ applications to the rural health program mention tracking only AI adoption metrics, not what happens after facilities deploy the tech. Some of these states may add further reporting requirements down the road.

Vermont spokespeople did not respond when asked why their state’s requires organizations to report only how many clinicians and patients are served by the tech, not how much time they save.

States requiring recipients to report outcomes include , which will track how often AI-powered patient monitoring devices trigger accurate alerts. organizations to track cost savings, while Wisconsin lists “patient outcomes” and “productivity and efficiencies” as possible metrics.

Huang said that after collecting results, states need to share them so other states and healthcare organizations can learn from their experiences.

“We do not have a lot of resources to waste on tools that don’t work in rural areas,” she said.

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

“They called me a ‘liability to the job site,’” Pugh said, recalling the words of his manager when a seizure cost him his last job at a fast-food restaurant in this western Montana city.

When the 46-year-old lost work in the past, his wife of 10 years covered their rent and he tended to their home until he found another job. But his wife died last year. Soon after, Pugh became homeless. His problem with alcohol became worse, which made managing his seizures more difficult.

“When she died, my whole base was depleted,” Pugh said.

Medicaid pays for the prescriptions that keep Pugh’s seizures at bay. The government-subsidized health coverage would also pay for an addiction treatment program that Pugh said he has tried to get into, but he was told there’s a waitlist.

Pugh’s goal has been to get healthy enough to work again. But he’s worried about being able to keep the Medicaid coverage he needs to get to that point.

Early Embrace of New Rules

In the spring, the federal government finalized regulations requiring millions of people who receive Medicaid benefits to prove they’re working, volunteering, or going to school to keep their coverage. States have until January to begin those checks. Montana, Arkansas, and Nebraska have already started implementing them.

The Trump administration’s federal work requirements exempt certain groups of people: those with disabilities, those older than 64, pregnant people and Native Americans, among others. To receive an exemption, anyone without a clear-cut qualification — such as through their age or disability status — will have to prove they’re too sick to work.

But the administration decided that being homeless isn’t a medical condition and can’t count as an automatic out from having to meet the new requirements. Many conservative policymakers support work requirements, and some states have attempted to implement such rules for years. At least four states — Montana, Arizona, Kentucky, and Utah — previously proposed policies that included homelessness as an exemption.

But federal officials have said that’s not allowed. In an email to ³Ô¹Ï²»´òìÈ, the Centers for Medicare & Medicaid Services declined to provide a comment on the record. But the agency confirmed that states must stick to the federal government’s list of exemptions. Homelessness in the U.S. increased by 27% from 2013 to 2025, from the Department of Housing and Urban Development. Last year, about 746,000 people .

Many, like Pugh, qualified for Medicaid, though the number of enrollees who are homeless is difficult to measure. In 2023, who received medical or behavioral health services through one of the nation’s roughly 300 programs were enrolled in Medicaid.

Jennifer Tolbert, deputy director of KFF’s Program on Medicaid and the Uninsured, said the federal regulations are a lot stricter than many states had expected, even those on board with work requirements. (KFF is a health information nonprofit that includes ³Ô¹Ï²»´òìÈ.)

“It took everyone by surprise,” Tolbert said.

Mehmet Oz, who leads CMS, touted the regulations as a “path to prosperity” during a press conference in June.

“We need to get people to try to work,” Oz said. In June, 25 mostly Democratic-led states over the regulations, arguing the medical frailty standard would be too hard for enrollees to meet — and for states to assess. The work requirements are projected to increase the number of uninsured people nationwide by by 2034, according to the Congressional Budget Office.

Most states will begin to implement the Medicaid work requirements in January. 

Montana plans to begin booting Medicaid enrollees from coverage this October if they can’t prove they’re in compliance with the work requirement.

“My Medicaid is still active, but when are they gonna cut that off from me?” Pugh said. “I can’t get employed. How am I supposed to survive?”

The differences between the states’ and federal government’s exemption lists don’t end with people who are homeless. In Montana, lawmakers also planned to excuse people fleeing domestic violence and caregivers of hospitalized family members — two other groups left off the federal exemption list.

“These are simply parties that, due to a number of conditions, cannot meet those requirements,” Republican state Rep. Ed Buttrey said in 2019 when the Montana Legislature passed its first Medicaid work requirement bill. Buttrey did not comment for this article.

Federal officials have said many people who are homeless could fall under another exemption, such as being too sick to work. But, like many states, Montana’s system to automatically conduct those checks through existing medical records isn’t ready, though health department spokesperson Jon Ebelt said it should be in place by October. Anyone not automatically exempted by the state would have 30 days to prove their case.

A Possible Exemption for Health

Pugh might qualify for a pass due to his seizures. But getting to doctor appointments the past year has been hard for him.

The anniversary of his wife’s death just passed. Typically, Pugh has to find a new place to sleep outside each night. One night while camping, Pugh lost his wallet and important documents. And with the addiction treatment centers that accept Medicaid patients overbooked, Pugh has had to rely on willpower to avoid drinking.

“I’m taking it one day at a time,” he said.

A little over two hours north, in Kalispell, Dustin Goss, a case manager at a homeless shelter called Samaritan House, said Pugh’s experience reflects why he’s worried that people who qualify for an exemption will get tangled in bureaucratic tape.

“You can’t really worry about getting paperwork done when you don’t know where you’re eating today,” Goss said.

Cassidy Kipp, who heads Samaritan House, said once people find shelter and start to stabilize, they typically find work. But even then, meeting the new requirements can be challenging. Clients often start with temporary and informal jobs — such as cleaning out a storage unit — that don’t come with a pay stub, Kipp said. 

Kaitlyn Bosshardt, a social worker at Partnership Health Center, a health clinic in Missoula, has seen more people priced out of longtime rentals as housing costs outpace people’s paychecks. Meanwhile, affordable housing and rental aid are limited.

Partnership Health is one of roughly 1,400 health centers nationwide that receive federal funding to serve patients based on what they can afford — meaning even those who lose Medicaid can receive care. But organizations representing health centers have said if too many patients lose the coverage, some clinics won’t be able to fill the financial hole.

The other problem is that these clinics generally don’t provide specialty care.

One day in June, as temperatures hovered around 90,  Pugh visited Watershed Navigation Center, a refuge run by Partnership for people without steady housing to have a meal or see a doctor. His doctor, Atarah Sidey, told Pugh that the neurology clinic that managed his seizures had dismissed him from their care after he missed three appointments.

She referred Pugh to the other neurologist in town and talked about trying to find treatment for his addiction.

“It’s just that if I don’t make the effort at changing, it ain’t gonna happen and I’m gonna end up found on the side of the road somewhere,” Pugh told Sidey.

“You got this, though, Tywon,” she responded as Pugh nodded his head. “You can do this.”

Pugh has connected with a social worker for help keeping his Medicaid. By late July, he was waiting for space to open at a Missoula addiction treatment center and waiting on responses from two job applications.

In the hard moments, Pugh imagines his wife telling him to stay calm, that things will get better.

“I just don’t wanna lose hope in the meantime,” he said.

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

Source: <a href=”; target=_”blank”>Centers for Medicare & Medicaid Services</a>

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³Ô¹Ï²»´òìÈ will update this database as more states respond to emails and public records requests for their documents.

Note: Data collected as of Aug. 18, 2026. ³Ô¹Ï²»´òìÈ reporters searched state websites, requested documents, and filed public records requests. ³Ô¹Ï²»´òìÈ continues to collect documents.

Sources: Documents publicly posted online or released in response to ³Ô¹Ï²»´òìÈ requests; <a href=”; target=_”blank”>Centers for Medicare & Medicaid Services</a>

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

Meanwhile, patients, their advocates, and clinicians say little has improved.

“It has never been this bad for patients,” said U.S. Rep. Greg Murphy (R-N.C.), a physician who co-chairs the GOP Doctors Caucus.

The overarching intent of the June 2025 pledge was to improve a controversial process called prior authorization, which regularly requires patients or someone on their medical team to seek approval from insurers before proceeding with treatment.

According to AHIP, the health insurance industry trade group, health plans have eliminated 6.5 million prior authorizations for patients — equal to an 11% reduction — since the announcement.

But critics remain skeptical. Sally Nix, a patient advocate who has a chronic disease, described the voluntary pledge as “performative.” And Murphy, who participated in the news conference with Health and Human Services Secretary Robert F. Kennedy Jr. announcing the pledge last year, said it has “no teeth.”

Voluntary insurer pledges rarely make things better for patients, said , a research professor at the Center on Health Insurance Reforms at Georgetown University.

“In the absence of clear rules, policies, standards, and mandates,” she said, insurance companies are “going to do what makes sense for them to do financially.”

The Department of Health and Human Services did not respond to questions for this report. It isn’t clear how, or whether, the Trump administration is holding insurers accountable.

‘Zero Faith’

Prior authorization — sometimes called preauthorization or precertification — has been around for decades. The insurance industry has long argued that the practice, which varies by company, helps control costs, reduces waste and fraud, and prevents potential harm to patients. It’s regularly invoked for a huge swath of services, ranging from low-cost urgent care to expensive cancer treatment.

“Prior authorization is a vital patient safeguard,” said Chris Bond, a spokesperson for AHIP.

The 2024 killing of UnitedHealthcare CEO Brian Thompson sparked a national groundswell of anger about insurance denials, with patients and doctors becoming increasingly vocal about the tactics they say insurance companies use to boost profits at the expense of care.

Prior authorization reform is one of the rare healthcare issues Democrats and Republicans tend to agree on. On July 15, the House Ways and Means Committee unanimously that would force Medicare Advantage plans to provide to the federal government a list of all items and services that are subject to prior authorization, and to report data about denials and grievances, among other requirements.

Last year’s industry pledge was organized as a direct response to public anger, Mehmet Oz, administrator of the Centers for Medicare & Medicaid Services, said when it was announced. “There’s violence in the streets over these issues,” he said.

“Americans are upset about it,” Oz said, later adding, “I’m looking forward to seeing the results.”

Mike Gartner, founder of Health Access Innovation, an organization that helps patients overturn insurance denials, said he doubts that insurance companies are changing their policies in meaningful ways. The 11% reduction in prior authorization cited by AHIP “hides a lot of nuance,” Gartner said.

Patients who need the costliest services, such as cancer treatment, are still being disproportionately denied access to doctor-recommended care, he said.

AHIP said its data included reductions in prior authorization for medical services, not prescription medicines. The trade group didn’t provide details explaining which services have been dropped from prior authorization or how those reductions differ across individual insurers.

Last year, Oz said the federal government would be “evaluating progress” toward the pledge and “driving accountability,” and he foreshadowed “public dashboards.” But no such dashboards exist, and federal officials did not respond to questions about how they’re holding companies accountable.

Murphy, the North Carolina congressman, said he has “zero faith” in the industry policing itself.

He didn’t believe insurance companies then, he said, “and I don’t believe them now.”

‘At War’ With an Insurer

In February, days after Betsy Adler and Justin Young’s daughter Coco was born with a serious heart defect, the Stillwater, Minnesota, family received paperwork showing they were racking up out-of-network costs.

During Adler’s pregnancy, the family had switched insurers, , which is based in Minnetonka, Minnesota, and one of that initially signed the industry pledge. Adler said she’d checked with her employer’s human resources department and on Medica’s website to make sure her maternal-fetal specialists and hospital were in-network before their new health plan went into effect earlier this year.

But then, the insurance company started processing some claims as out-of-network. By mid-March, the family had accrued more than $4,000 in out-of-network charges, on top of more than $3,000 for in-network bills. And the bills kept coming.

When Adler, a psychotherapist, called to figure out what was going on, she said, an insurance company representative said she hadn’t submitted a referral from her primary care provider beforehand. Attempts to fix the problem went nowhere. At one point, Adler said, Medica required her to visit a clinic she’d never been to before to obtain a referral. But she said a Medica representative told her the referral was never received, because the insurer’s fax machine was down.

“I have a critically ill child,” Adler remembered thinking shortly after Coco was discharged from the cardiovascular intensive care unit. “I can either spend my emotional energy at war with Medica, or I can let it go and just enjoy my time with my daughter.”

Medica spokesperson Greg Bury said he wouldn’t discuss the case, citing patient privacy rules. In an emailed statement, he wrote the company is “committed to working with her to ensure she understands what is covered under her benefits and our responsibilities.”

One of six specific promises all insurers made when they signed the pledge was to honor a 90-day grace period when patients switch insurance plans, starting Jan. 1 of this year. Often called “continuity of care,” this grace period allows patients to temporarily continue receiving services and medications that were authorized under a previous insurer.

But that applies only in some circumstances, Georgetown’s Corlette said. The wording of the pledge suggests that insurance companies aren’t obligated to honor another company’s network parameters. When Adler and Young switched insurers, for example, Medica was not obligated to cover the cost of out-of-network providers as if they were in-network, even though they were in-network under the family’s old plan.

Adler and Young switched insurance companies again when Coco was a month old, to avoid accruing more out-of-network costs.

Denial After Approval

The percentages cited by AHIP don’t tell the whole story, said Nix, the patient advocate. Insurers are “not including the data for the loopholes they create,” she said.

For example, nothing in the pledge prevents insurance companies from retroactively denying payment, even when care is preapproved. “Patients are going to see a lot more retroactive denials,” said Nix, who recently had her insurer process, then later deny, a claim for injections to relieve her nerve pain.

Something similar recently happened to Jocelyn Austin, 49, of Amherst, New York. Over the course of nearly 20 years, she developed an addiction to sleeping and anxiety pills prescribed to her by a doctor. Last year, she spent weeks at an inpatient treatment center for substance abuse. Her insurer, Independent Health, had approved the admission. Austin said she has been substance-free since her discharge.

But the facility sent her a bill for more than $12,000 in December showing her insurer had not paid for the treatment she received, according to documents Austin shared with ³Ô¹Ï²»´òìÈ. This was in addition to the $10,000 she paid at the beginning of her treatment to satisfy her out-of-network deductible. The approval letters from Independent Health had specified that “authorization is not a guarantee of claim payment.”

Frank Sava, a spokesperson for Independent Health, said a denial was issued and upheld in this case because the services provided “were inconsistent with the care that was authorized” and “the medical record did not sufficiently support what was billed.” He said those findings were reviewed and confirmed by an outside consultant.

An explanation of benefits issued by the insurer last summer indicated the “provider,” not the patient, was responsible for the cost of her treatment. And yet the treatment facility has continued to pressure her for payment, she said.

Austin, who has not paid her outstanding bill, said insurance companies “should be held accountable.”

‘Significant Work Ahead’

Another one of the six commitments insurers made last year was to adopt new technology that would standardize the electronic submission of prior authorization requests. During the news conference announcing the pledge last summer, Chris Klomp, the director of Medicare and a deputy CMS administrator, said more than 50% of prior authorizations are still paper-based and processed by phone or fax machine.

In April, AHIP related to that technology initiative, explaining that participating insurers would adopt the new standards on a rolling basis. Health insurers agreed to implement the pledge’s various commitments by predetermined deadlines, and this initiative is scheduled to be operational by Jan. 1, 2027. But eight insurers that initially signed the pledge last year didn’t sign the technology update when it was announced in April, AHIP told ³Ô¹Ï²»´òìÈ.

Those insurers are Alignment Health Plan, EmblemHealth, HealthFirst, Independent Health, Medica, MVP Health Care, Point32Health, and SummaCare. Their beneficiaries span the country, from California to New York. None of those eight insurers agreed to interviews for this report, but most sent ³Ô¹Ï²»´òìÈ emailed statements indicating that they remain committed to prior authorization reform.

AHIP’s approach to continuity of care “would have required the transfer of confidential member health information through a non-standardized process involving third-party participation,” wrote Jerry Slowey, a spokesperson for , which offers Medicare Advantage policies in Arizona, California, Nevada, North Carolina, and Texas. “We do not believe that level of data sharing was contemplated in the original commitment.”

Bury, the spokesperson for Medica, which covers beneficiaries in Iowa, Kansas, Minnesota, Missouri, Nebraska, North Dakota, Oklahoma, South Dakota, and Wisconsin, said the company “supports the goal of these standardization efforts.” But the April update “raised a significant technical and operational hurdle that we are not able to commit to at this time,” he said.

Alex Gomez, a spokesperson for EmblemHealth, said in late June the company “will sign onto the commitment” after ³Ô¹Ï²»´òìÈ posed questions about why it had not endorsed the April update.

“We anticipate more plans will be added over the coming months,” said Bond, the AHIP spokesperson. Health plans are “working continuously to implement their commitments to simplify and improve the experience.” He acknowledged that “there is still significant work ahead.”

The original pledge also included a promise that insurance companies would enhance transparency and use “clear, easy-to-understand explanations” when communicating to patients — something they were already supposed to be doing under the Affordable Care Act.

Yet companies still regularly neglect to explain why care has been denied, and their communications often contain “inconsistent and contradictory information,” said Gartner, of Health Access Innovation. He and Murphy also said they suspect insurance companies are increasingly using artificial intelligence to generate denials.

“They craft the pathways to basically deny things immediately with the hope that people will give up,” Murphy said.

The congressman said he wishes President Donald Trump would sign executive orders addressing some of these issues. “The problem is the insurance industry is the strongest lobby in this town.”

Do you have an experience with prior authorization you’d like to share?  to tell ³Ô¹Ï²»´òìÈ your story.

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If you or someone you know may be experiencing a mental health crisis, contact the 988 Suicide & Crisis Lifeline by dialing or texting “988.”

Eight days before my 33rd birthday in April, a social worker at a crisis clinic near Denver determined I was an imminent danger to myself. She placed me on an involuntary 72-hour mental health hold.

What came next wasn’t treatment, but a search for a bed. Clinic staffers called area hospitals with inpatient psychiatric units, asking if they had available beds. They didn’t. So, I was told I had to spend the night at the clinic, which is open 24/7. I settled into a recliner, trying to make myself comfortable as my mind drifted in a blank, disassociated haze. Sleep came in brief bursts.

Since the 1950s, the United States has seen a nationwide due in part to deinstitutionalization and the rise of antipsychotics. But that has created a critical shortage for those needing help. From 2011 to 2023, the number of hospitals with inpatient psychiatric units , according to a 2025 study. Another study from that year found that this country has 28.4 inpatient psychiatric beds per 100,000 people — not even half the 60-bed ratio researchers frequently refer to as the .

The shortage has created what the American Psychiatric Association : emergency rooms overwhelmed with people suffering from severe mental health illnesses, inpatient stays prematurely shortened to speed up bed turnover, and acutely ill individuals left without critical care.

“Where are these people going?” said , an assistant health policy professor at Rutgers University, who co-authored those 2025 studies. “For people who don’t receive this care, they don’t just go away. How is it affecting them? Society? Their families?”

Meanwhile, the White House shut down the part of the national suicide hotline catering to LGBTQ+ youth, President Donald Trump’s 2027 budget proposal calls for cuts to agencies , and Health and Human Services Secretary Robert F. Kennedy Jr. recently announced a plan to .”

A Fractured System

I was already intimately familiar with the country’s fractured mental healthcare system before I was involuntarily committed. What I had yet to experience myself, I saw through my wife: waitlists, outpatient programs stretched beyond capacity, and inpatient psychiatric care so scarce that access often depends on surviving a crisis severe enough to justify it.

She died by suicide after we had separated.

As the years passed, grief and anxiety pushed me from observer to patient.

At the crisis clinic, I woke up the following morning disoriented and groggy. In the bathroom — its door deliberately unable to latch, swinging both ways so staffers could enter in case of an emergency — I stood at the sink and watched the faucet run, trying to piece together how I had ended up here.

America’s history of treating mental illness is long and complicated.

The 19th and 20th centuries saw the removal of people with severe mental disorders from jails and — squalid facilities designed to house the poor — to state asylums that (though they ultimately became ). From the 1860s to the 1930s, the number of psychiatric hospitals increased dramatically, according to the American Psychiatric Association, and by 1955, the number of psychiatric beds in the U.S. peaked at more than half a million.

However, owing to the development of antipsychotics, the belief that psychiatric institutions were inhumane, and President John F. Kennedy’s 1963 to free thousands of Americans from a life in institutions, many state hospitals shut down. An estimated for adults and kids are left in a country where more than 14 million experience severe mental illness each year.

Two years after JFK’s legislation passed, a new policy prohibited federal Medicaid funds from covering inpatient psychiatric care in facilities . The goal was to encourage states to move patients out of large, often substandard psychiatric institutions into community-based care settings.

The consequences of these changes, however, have been far-ranging. People with severe mental illnesses are often forced to as they wait for a bed to open. The length of stay in state psychiatric hospitals , according to research by the Treatment Advocacy Center, a national organization focused on eliminating barriers to the treatment of severe mental illness. And some people with mental illness .

From 1986 to 2014, as the behavioral health crisis intensified, mental health expenditures in the U.S. rose from $32 billion to $186 billion — though the proportion of that spending allocated to inpatient care .

This period also recorded major policy shifts affecting inpatient hospitalization rates, notably the 1999 U.S. Supreme Court decision in Olmstead v. L.C. The ruling shifted care away from psychiatric facilities by mandating states to people with developmental and mental disabilities.

“The road to hell is paved with good intentions,” said Leslie Carpenter, legislative advocacy manager at the Treatment Advocacy Center. “A lot of these bills, including the Community Mental Health Act, were really well intended and ended up with adverse consequences.”

For me, that next day at the clinic passed both painfully slowly and in a blur. A staff member I hadn’t met before told me they were still reaching out to hospitals across the region. The search for a bed continued.

‘No One Wants To Pay for Any of This Care’

Last year, members of Congress introduced two bills to change the 16-bed Medicaid funding cap at inpatient psychiatric facilities, the and the , which would increase the cap to 36 beds. Both have stalled in the House.

According to the Congressional Budget Office, a federal agency that analyzes budgetary and economic issues, eliminating the 16-bed limit would increase Medicaid expenditures from 2024 to 2033.

“No one wants to pay for any of this care that people need,” said Colorado state Sen. , a Democrat who has witnessed limitations to Colorado’s mental healthcare system firsthand because her son has schizoaffective disorder.

In lieu of federal action, states are stepping up to bridge the gaps.

Colorado, 15 other states, and Washington, D.C., now operate under waivers allowing Medicaid to fund inpatient facilities for mental health treatment, according to KFF data. Seven additional states have waivers pending. One 2025 study found that these waivers may be tied to fewer hospitalizations, emergency department visits, and incarcerations .

Yet even local efforts to improve mental healthcare face resistance. In California, Colorado, Iowa, Missouri, Nebraska, and New York, locals have pushed back against proposed psychiatric facilities for minors, claiming such facilities will worsen safety and lower property values. Behavioral health advocates have disputed these claims and argued they are rooted in stigma.

That psychiatric facility in Colorado was . The state has nearly 20 inpatient beds per 100,000 people, , according to 2022 data across all 50 states plus Washington, D.C., collected by the Treatment Advocacy Center. Wyoming ranked first with 47.3 beds per 100,000 residents, although, as the least populous state, it has only 275 total inpatient beds compared with California’s 5,703. Minnesota ranked last, with only 4.3 inpatient beds per 100,000 residents.

While increasing the number of inpatient psychiatric beds is vital, mental health advocates are also calling for , such as peer support specialists and clubhouses, where people with serious mental illnesses can learn life skills and find community.

When it came time for me to use our mental health safety net, I was among the fortunate ones: At noon the day after my hold began, a bed opened at a hospital in Denver — a rare stroke of luck in a system in which many people wait days or weeks for the care they need. An ambulance transferred me to the hospital at 3 p.m., marking 21 hours into my 72-hour hold.

Two days later, on my last day at the psychiatric hospital, I stood outside the nurse’s station awaiting discharge papers.

A man I had not seen before looked at me and asked, “Are you leaving?”

“Yes,” I said. “Are you being admitted?”

“Yeah,” he responded. “This is my third time being hospitalized in a year.”

I shook his hand. “Good luck,” I said, and I walked out the door.

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

³Ô¹Ï²»´òìÈ freelance contributor Michael Scaturro discussed the FDA’s new approval of a sunscreen chemical on Science Friday on June 19.

• .
• Read Scaturro’s “FDA’s Greenlight of Old Chemical Offers Chance To Restore Faith in Sunscreen.”

³Ô¹Ï²»´òìÈ South Dakota correspondent Arielle Zionts discussed the closure of dialysis clinics in rural Nebraska on The Daily Yonder’s Yonder Radio on June 18.

• .
• Read Zionts’ “Rural Nebraska Dialysis Unit Closes Despite the State’s $219M in Rural Health Funding.”

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

The Department of Health and Human Services is seeking data from little-known state systems that allow hospitals and clinics to exchange detailed, identifiable patient information, ³Ô¹Ï²»´òìÈ has learned.

In private meetings, some public health leaders have objected to giving Kennedy’s team access to such data, raising doubts that it’s legal or that the information would even be useful.

They have also expressed concerns about allowing the federal government to peer into the minutiae of Americans’ medical records, which could mean viewing anything from doctors’ notes to prescription history. HHS has offered no insight into how it will protect or handle the personal health information it obtains.

But Kennedy told ³Ô¹Ï²»´òìÈ that medical records are key to investigating the cause of autism, vaccine safety, and chronic diseases. And millions of dollars in grant money has poured into a Nebraska nonprofit that has assisted Kennedy’s effort, according to state records.

He and his advisers have been frustrated that federal access to Americans’ medical records has been limited.

“We need a good health record system, and one of the things that really surprised me most when I came into office is that there is — that the systems are broken,” Kennedy said in a May interview. “We’ve had to go to the states and, luckily, we’ve got a lot of cooperation from the states, but we now have databases together that we can actually do the studies on. Those studies are in motion.”

HHS has not publicly announced any new projects involving medical records and autism or vaccine research. Kennedy faced blowback last year when he proposed compiling the medical records of people with autism to create a federal disease registry — which health department officials .

But Kennedy said in May, “We have a whole pipeline of studies that will be done over the next year.”

Though the White House has steered Kennedy away from further changes to U.S. vaccine policy ahead of November’s crucial midterm elections, President Donald Trump has regularly echoed Kennedy’s doubts about vaccine safety and last week signed an executive order calling for the U.S. to reduce the number of vaccines recommended for children.

Kennedy’s political appointees and allies — including William “Reyn” Archer III, a former Texas health official and whom Kennedy hired as a senior adviser — have led the initiative for the health department to collect and examine medical records.

Federal officials met with leaders of the state-run health information exchange systems several times over the past year and asked how the personal medical records they maintain could be used for vaccine research, according to seven people who participated in the discussions or were familiar with them.

Craig Behm, who runs the Maryland health information exchange, said Kennedy’s team asked about how the vast trove of medical records they store from hospitals and health systems could be used to study vaccines.

“If this administration wants to conduct research on the effectiveness of vaccines, are you saying you all can help us conduct that research?” Behm recalled being asked by a top official at HHS’ health information technology office.

Last June, Behm and leaders of other state exchanges met with Kennedy’s top advisers to discuss sharing more medical data with federal agencies. The state organizations followed up with a pitch in October for a new surveillance system that would give the federal health department “real-time, 24-hour data feeds on opioid and chronic disease trends” within a year, according to a presentation reviewed by ³Ô¹Ï²»´òìÈ. Under the proposal, HHS would get data from 90% of the population’s medical records by 2028.

Administration officials regularly asked during the meetings how the records could be used to monitor vaccine safety. Kennedy has rejected the federal government’s current vaccine-monitoring systems; decades of research has shown immunizations are safe and effective for most people.

“Vaccine safety, or whatever words you want to use, has come up pretty consistently in those conversations,” said John Kansky, CEO of the Indiana Health Information Exchange.

Kansky sees the potential value of sharing information from the exchanges for public health but is worried about the focus on vaccines: “It’s like, oh man, I wish you would have picked something that pushed fewer buttons for people.”

A System To Monitor Chronic Disease

Nearly every state has at least one health information exchange — often regulated by state laws and run by private companies or nonprofits — that enables hospitals and health systems to immediately share patients’ medical records with one another. The systems allow doctors and nurses to quickly pull up nearly anyone’s medical history and records at emergency rooms or share after-visit summaries and notes with patients’ primary care providers, for example.

In certain circumstances — most often dealing with cases of infectious diseases such as measles or flu — the exchanges notify public health authorities, like the state health department or the Centers for Disease Control and Prevention. Using the exchanges for broader public health purposes is not an unusual idea in itself. But it can present privacy, legal, and ethical complications, health officials say.

In the end, Behm said his organization in Maryland declined to share more data with the federal government for vaccine research, noting that sharing medical records for that purpose would require a rash of approvals from hospitals, state political leaders, and research boards. Any new data-sharing agreement should also have a clear, detailed framework outlining what would be shared and with whom, he added.

“A number of us said, ‘We can’t do anything our agreements don’t allow us to do, so no,’” Behm said. Indeed, most health information exchanges have contractual restrictions on who can access clinical data.

Kansky said Indiana is still weighing whether to provide additional data for Kennedy’s project, and that nothing has yet been shared.

HHS spokesperson Emily Hilliard did not answer questions about how many states are participating in Kennedy’s project, what new data the agency is collecting, how much the federal government is spending on the initiative, how it is protecting patient privacy, or who has access to the data.

“HHS is strengthening public health surveillance and modernizing data systems to better understand and combat the childhood chronic disease epidemic as part of Secretary Kennedy’s Make America Healthy Again agenda,” Hilliard said in an emailed statement. “Americans deserve robust systems to monitor the drivers of chronic illness.”

Kennedy has asserted, without evidence, that vaccines can cause chronic illness.

A Kennedy Partner in Nebraska

At least one state has been cooperative.

The former leader of Nebraska’s state health information exchange has led the effort to share data from medical records with the federal government.

Jaime Bland, former CEO of CyncHealth — the Nebraska health information exchange used by in the state — said several states are looking to “open up channels” to provide more analysis to Kennedy’s team.

“They’re looking at the data differently and providing some insights back to the CDC,” Bland told ³Ô¹Ï²»´òìÈ.

Bland was among a group who proposed that CyncHealth would help kick off the initiative, according to a 43-slide PowerPoint presented to federal officials during an October meeting.

CyncHealth and other state health information exchanges would “ingest data from hospitals, clinics, laboratories, pharmacies, payers, and social services agencies,” then “link claims and clinical records through a master patient index.”

Data from the exchanges “will be deidentified where appropriate,” according to one slide.

The federal government would pay the exchanges for furnishing the records, according to the proposal: $3 a person, annually.

Officials would “frame publicly that this is not a new database, but a federated trust model that delivers real-time data for all HHS missions,” the presentation reads.

After the meeting, Nebraska’s health department was awarded a large grant from the CDC, and CyncHealth in turn got millions of dollars from the state.

On Dec. 19, the CDC announced new funding under its , which sends money to state and local health departments for lab work, health information enhancements, and solutions for outbreaks.

Nebraska’s state health department was awarded $18.7 million — the most of any state last year, though Nebraska is the 38th most populous state. By comparison, Texas received $9.2 million, and California got $10.8 million.

CyncHealth was then awarded three contracts totaling $13.6 million from the state health department just weeks later, on Jan. 9 and Jan. 16, according to a publicly accessible database of state contracts.

Grace McNamara, a spokesperson for CyncHealth, said it retained $2.4 million of the funding for Kennedy’s project; the remaining money was distributed to “other participating states and various vendor organizations for implementation support.”

A former CDC official who was aware of the transaction, but not authorized to speak publicly about it, confirmed the money was intended for CyncHealth to supply data for Kennedy’s initiative to look at vaccines and autism. McNamara said that the “work is focused on improving outcomes related to acute and chronic illnesses.”

“The referenced project is not research, but rather a proof-of-concept project on how health information exchange and public health can work together to improve health outcomes and is not specific to autism,” she said in an emailed statement.

McNamara did not answer questions about what type of medical data is being provided to the federal health department or whether patients’ identifying information is removed.

Bland left her post at CyncHealth — where she was paid nearly — in December. She was named in April as the chief data strategist for the MAHA Institute — a think tank founded by allies of Kennedy and Trump to advance their Make America Healthy Again movement.

Bland agreed with Kennedy that data from state health information exchanges could provide more insight into autism’s causes or vaccine injuries.

“The data is so fragmented, so modeled when it comes to population health and public health, that we lose sight of the individual stories,” Bland said. She told a story she had heard about a woman who had a seizure after receiving the HPV vaccine.

“You know, the vaccine is safe — it absolutely is — but it wasn’t safe for her,” Bland said. “As public health officials, we say the vaccine is safe. But there are cases where it is not.”

Daniel Jernigan, a former top CDC official who left the agency last summer, said he tried to point Kennedy to data that would help the health secretary study vaccine safety and autism.

After 31 years at the CDC overseeing public health surveillance, emerging infectious diseases, and the influenza divisions, Jernigan thought the solution was simple. The secretary could work with researchers to obtain huge databases pulled from health systems nationwide and maintained by major electronic health records companies.

Those databases are deidentified, meaning they don’t include patient names or other information that can identify individuals. Jernigan said Kennedy didn’t seem interested.

Instead, as The New York Times first reported, the health secretary dispatched two top advisers — Archer and Hannah Anderson, his former deputy chief of staff — to the CDC’s headquarters in Atlanta last July to download millions of identifiable patient records directly from the Vaccine Safety Datalink, the system the health agency uses to investigate complications from vaccines. The records, though, were decades old.

Jernigan said the federal government has limited legal authority to access medical records from state health information exchanges. In any case, examining those records may provide a view of a person’s medical history that will not necessarily produce answers to Kennedy’s questions about vaccines and autism.

“If they’re just using the electronic health record data, there are limits to that,” Jernigan said. “If they’re only looking at electronic health record data, all you’re going to get is what was captured in the encounter. It’s not going to be very satisfying.”

³Ô¹Ï²»´òìÈ data reporter Maia Rosenfeld contributed to this article.

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

And they say an overhaul — less than seven months before states must start enforcing the requirement — will be costly.

by the Centers for Medicare & Medicaid Services dictate many granular details about how the new work requirements will play out. They cover how states should check whether Medicaid enrollees are following the rules, and how people can claim an exemption so that their health benefits don’t hinge on work, community service, or going to school.

Next year, President Donald Trump’s One Big Beautiful Bill Act could require roughly across 42 states and the District of Columbia who receive Medicaid benefits to prove they’re working or participating in a similar activity to keep their health coverage — unless they qualify for an exemption.

Much of the verification will run through state computer systems that assess whether low-income people qualify for Medicaid and other safety net programs — technology often built and run by private companies under contracts routinely worth hundreds of millions of dollars. Many of those systems have a history of errors that can cut off benefits to eligible people.

For months, states have been communicating with federal regulators and rushing to build systems to comply with the looming mandates, said Kinda Serafi, a partner at the Manatt Health consulting and legal firm. The rules released this week represent a “significant policy pivot” from what states were expecting, Serafi said.

“The administration has actually taken what we know to be a tough situation and has just made it even worse,” Serafi said. States had already committed to paying contractors tens of millions to adjust their systems.

After Trump signed his signature tax-and-spending bill into law last July, one of the most significant remaining questions was how much discretion the federal government would give states to define exemptions for people too sick to work. The “medical frailty” exemption allows a person to claim they have a health condition that prevents them from working at least 80 hours a month, as the law requires.

To qualify, a person generally must fit into at least one of five categories: They must be blind or disabled; have a substance use disorder; have a disabling mental disorder; have a physical, intellectual, or developmental disability that significantly impairs their daily life; or have a serious medical condition. States are not allowed to add categories.

Under the new regulations, CMS said having a medical condition alone isn’t sufficient to exempt someone from the work requirements. States must assess “the severity of an individual’s condition” to determine whether they can stay on Medicaid without working — a standard that makes it more difficult for enrollees to meet the criteria.

CMS officials did not list specific conditions that qualify for exemptions, but the agency did say homelessness can’t be a reason to claim that exemption because it is not a medical condition.

To implement the law, states “will have to undo work that they did,” said , deputy director of Princeton University’s State Health and Value Strategies program, which works with state governments on various health coverage issues.

The Trump administration previously acknowledged that the work to upgrade state Medicaid eligibility systems to comply with the law is coming at a cost. In January, top CMS officials said government contractors, including Deloitte, Accenture, and Optum, and reduced rates through 2028 to help states adjust their systems.

The discounts “may be helpful” in some states, but they’re “not going to be helpful across the board” due to variations in state contracts, said , director of the State Health and Value Strategies program.

“Anytime you have to go back and say, ‘Oops, we need to reprogram this one thing,’ there’s a cost,” Howard said.

States were prepared to create lists of conditions and diseases to qualify people for work requirement exemptions, according to health care experts advising them. Mining data to verify someone’s illness was already a tall order for states because the computer systems that determine whether someone is eligible for Medicaid often do not communicate with the systems that track medical claims.

America’s health care payment systems rely on a set of standardized codes that correspond to specific diagnoses.

But there’s no “code that designates that someone is too sick to work — that’s a subjective assessment,” said Rachel Klein, deputy executive director of , a nonpartisan advocacy group for people with HIV. “This is a recipe for disaster.”

The new federal standards pose immediate issues for Nebraska, which launched its Medicaid work requirement on May 1, eight months before the federally mandated deadline. Nebraska handles decisions on medical frailty differently than the Trump administration does.

Nebraska officials had already released a nearly of medical conditions that qualify as exemptions, such as types of cancer, dementia, autism, epilepsy, HIV, and Parkinson’s disease. The state, which relies on government workers to check Medicaid eligibility, doesn’t require a person to prove how sick they are.

But under Trump’s rules, people will have to show their qualifying illness is impeding their ability to work.

Now, Nebraska is “going to have to go back and figure out how to assess whether all of these people are too sick to meet the requirement,” Klein said.

Medicaid enrollees are slated to start losing coverage this summer under Nebraska’s early rollout.

Sarah Maresh, a program director with , an advocacy organization for people with low incomes, said the state should refrain from terminating people’s coverage until next year because of the changes it will need to make. State residents are already confused and scared, she said, and the new rule “makes matters much worse.”

In response to several questions, Jeff Powell, a spokesperson for Nebraska’s Department of Health and Human Services, said the state is reviewing the new federal regulation to determine potential impacts.

The new federal standards will limit people’s ability to attest that they are medically frail starting in 2028 and will require documentation as proof, another change states weren’t expecting, Meuse said. had planned to allow applicants and enrollees to declare conditions themselves to get exemptions, according to KFF.

Striking the right balance of flexibility was an important part of deliberations when crafting these rules, CMS Administrator Mehmet Oz said on a June 1 call with reporters. “The mantra we kept coming back to was that we’re forgiving, but we’re not foolish,” he said.

Trump officials wrote in the regulation that Medicaid work requirements have “the potential to empower Medicaid beneficiaries” by allowing them to “escape isolation and dependency, build confidence, achieve self-sufficiency and prosperity, and improve health.”

Stephanie Burdick, a leader of the Protect Medicaid Utah coalition, disputed the premise.

“If they want to improve work opportunities or connection and decrease isolation and loneliness, they would be starting job programs and volunteer service programs,” Burdick said. “They wouldn’t just be forcing more administrative burden onto people and then saying that it’s good for them.”

An estimated will become uninsured by 2034 due to Medicaid work requirements, according to the nonpartisan Congressional Budget Office.

But with the new regulations, Howard said, there’s a risk of “that number being even higher.”

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