Still, Montana’s health department decided last year that Hailstone is no longer eligible for low-cost disability health coverage through Medicaid. The department switched her coverage to the state’s Children’s Health Insurance Program, another Medicaid program — three months before she aged out.

Before making the decision, the state didn’t seek records from the medical team treating Hailstone, according to letters from those doctors reviewed by Ñî¹óåú´«Ã½Ò•îl Health News. Rather, the administrative ruling came after state officials learned the now-19-year-old had stopped receiving Social Security disability payments. She said she did that because she hoped to get healthy enough to work and save some money — beyond what’s allowed under the tethered to those payments. But her health changes day to day, and she said for now she’s still too sick to consistently work.

Hailstone, who lives with her mom, has been able to keep Medicaid coverage while they appeal the case. She said that without Medicaid she can’t afford the treatment to manage the aftermath of her cancer.

“It feels like this process was made to make you give up,” Hailstone said.

Patients with disabilities have long struggled with administrative hoops, blunders, and confusion when trying to qualify for federally subsidized health coverage because of their illness. Now, new federal Medicaid work requirements mean states face the additional task of deciding who qualifies for a medical exemption. That means reviewing medical cases for an even larger swath of Medicaid enrollees.

Attorneys, researchers, and advocates who specialize in public aid said disability cases like Hailstone’s — though separate from the incoming work requirements — are an indication that states aren’t ready. As a result, they said, more people will be denied coverage in an opaque process.

“This will be the story of millions of people,” said Anthony Wright, who heads Families USA, a national nonprofit that advocates for ways to make healthcare more accessible.

Jon Ebelt, a spokesperson with the Montana Department of Public Health and Human Services, said the state doesn’t comment on individual Medicaid cases.

An will have to meet the new rules requiring them to prove they’re working, going to school, or volunteering to keep their Medicaid coverage, according to the Congressional Budget Office. of those enrollees live with a chronic health condition, according to KFF. Some will be excused from those rules if they can prove they’re too sick to work.

More than 5 million people are expected to lose Medicaid coverage by 2034 because of the work requirements, according to the CBO.

Work Requirements Become Law

Many Republican policymakers and the Trump administration have touted Medicaid work requirements to preserve coverage for the neediest. Congress made that national policy through last year’s One Big Beautiful Bill Act and gave states until January 2027 to implement work-for-coverage rules.

Some states are starting those checks early. Montana began in July. Nebraska initiated work requirements in May.

In the federal law creating the work requirements, Congress allowed states to exempt people who have an illness that qualifies them as “medically frail.” Many states created plans for those judgment calls, only to be surprised when federal officials released rules for the requirements that went beyond what Congress outlined, by also requiring enrollees to prove their illness makes it too hard to work.

Families USA and other organizations have argued the new rules force states to set up a patchwork of systems that, together, would be larger and more complicated than the Social Security Administration’s own disability review system. Last year, that federal program cost to administer to roughly 7 million people nationally. For comparison, Wright said, the federal law provided $200 million for states to share as they implement the work requirements. States are paying contractors millions of dollars to prepare often already flawed public aid systems to meet the new standards.

In June, 25 states over the medical frailty rules, arguing they’re too hard for patients to meet and for states to assess. That case is ongoing.

Hailstone was diagnosed with blood cancer at age 10. Her intestines tore, which led to their partial removal. As a result, her body struggles to process food and she can face severe dehydration. She said lingering side effects from her cancer treatment can leave her mind foggy and cause her hands and feet to swell enough that it’s hard to grip a fork or walk across a room.

Cancer dominated nearly half her life. It left mental scars, too.

“Some days you feel fine and then you suddenly crash,” Hailstone said.

Hailstone and her mom live in Roundup, a central Montana town of roughly 2,000 people. They regularly make the nearly two-hour round-trip drive to Billings for specialized care. She typically has three medical appointments a week to see her physical and occupational therapists and a mental health counselor.

Hailstone said she’s lucky she has her mother’s help navigating Medicaid. Her mom, Kyla Hailstone, said that the state hasn’t clearly defined how it determined her daughter’s disability status and that its appeal process has been slow and dysfunctional.

Taya Hailstone would qualify for Medicaid based on her income if she can’t prove her eligibility for disability coverage. But that would mean proving she’s too sick to meet the work requirement — putting her in the same position of having to rely on a state review of her illness.

“If I lose this, this is life-changing,” Hailstone said.

‘Things Fall Through the Cracks’

Hailstone qualified as disabled through the federal government as recently as 2024, about a year before the state said it was dropping her coverage. State officials can do their own medical review to determine whether someone meets the federal definition of a disability to access Medicaid.

“Whether that happens is always a bit of a crapshoot just based on state capacity,” said Megan Dishong, deputy director of the Montana Legal Services Association, which helps low-income people navigate public programs. “Things fall through the cracks.”

Ebelt said the state health department accepts disability decisions from the Social Security Administration. The state agency can conduct an internal disability determination if a person doesn’t have one from the SSA, but Ebelt said it doesn’t have to if a person qualifies for coverage another way.

“We are committed to treating every client with respect and helping those who are eligible receive appropriate Medicaid coverage,” Ebelt said.

Montana instituted a three-month grace period for the work requirements. State officials won’t begin disenrolling people for noncompliance until October.

a University of Michigan social policy professor who has studied bureaucratic obstacles to public benefits, said convoluted disability cases are common enough for attorneys to specialize in accessing aid.

“When we’ve designed public programs in ways that people can’t figure out whether they’re eligible without consulting lawyers, we’ve done something wrong,” Herd said. “That has huge, huge implications for what’s to come.”

Montana officials have said they’ll automatically review medical records that could help patients qualify for an exemption. Even so, the federal guidelines released in June mean patients will probably still face additional steps to guarantee an exemption.

Meanwhile, already overstretched doctors worry they’ll face the burden of judging whether someone’s illness qualifies them for a work exemption.

Dishong said that between now and October, Montana officials could offer more clarity on how the process will work. She said she’s worried the state will end up “with a slow-roll mess” instead.

“This is a problem that’s just starting,” Dishong said.

As for Hailstone, she’s now reapplying for Social Security disability payments. That aid would limit how much she can work. But it would also guarantee access to Medicaid.

Have you tried to prove your eligibility for Medicaid under new rules that require people to show they are working, going to school, or participating in another qualifying activity? Click here to contact Ñî¹óåú´«Ã½Ò•îl Health News.

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MILLVILLE, Pa. — In an open field, arrows whizzed through the humid June air and struck their targets. Campers and counselors cheered.

It was archery hour at . Operations director Drew Meyer watched, a few tears escaping from behind his dark sunglasses.

“They will surprise you, like, flat out,” he said of the campers, who have all survived brain injuries. “They’ll come out here, and they’ll shoot for three hours and start hitting the target.”

Campers, ranging in age from 10 to 21, have been coming to Camp Cranium in Pennsylvania’s rural Columbia County since 2008. Some of their brain injuries are so severe that they have to relearn basics, from talking to tying their shoelaces. Some use wheelchairs or crutches. But during a week at camp, they climb rock walls, swim, and whiz down a zip line through the lush forest.

The existence of Camp Cranium, and a handful of others like it, is a response to a decades-long national trend: More people, including children, now survive crises resulting in brain injury than did in the 1980s. The improvements in survival are largely due to seat belt laws and and trauma centers that can treat injuries quickly.

But recently, efforts to track and prevent one type of brain injury, traumatic ones, are in flux after Congress didn’t renew a and prevention of traumatic brain injuries, and the Trump administration fired hundreds of employees at the Centers for Disease Control and Prevention, including the team tracking traumatic brain injuries, or TBIs.

“Brain injury can happen to anybody,” said , executive director of the . “This community deserves more.”

Tracking Brain Injuries

Lucas Hardy, 14, smiled at the encouraging crowd below. In a shady clearing in the woods, he climbed the 30-foot rock wall, aided by a hoist that pulled him out of his wheelchair and helped support his moves. Hardy suffered a traumatic brain injury at age 3, when a tree branch fell on him at a birthday party.

Annually, an estimated 2.8 million Americans experience a TBI — including about 475,000 children, according to the .

Recent data suggests those are undercounts. In 2018, a CDC team piloted a household survey asking about TBIs in a sample of U.S. children and adults. The results concluding that such injuries, which are often considered “hidden” because the damage is internal and unseen, are more widespread than hospitalization numbers suggest.

The mass firings at the CDC in early 2025 studying TBI, right before they were expected to launch a . A spokesperson for the Department of Health and Human Services, Emily Hilliard, did not respond to questions about the number of employees terminated, or if they were reinstated or replaced.

In a statement, she said: “The Trump Administration remains committed to supporting efforts to prevent traumatic brain injuries, improve surveillance, and ensure Americans have access to practical, evidence-based information that can help protect their health and safety.”

She said the agency’s TBI work is now handled by other staff members at the National Center for Injury Prevention and Control.

Hilliard said the CDC is deciding how to establish a cost-effective national concussion surveillance system within the bounds of current funding, and said the agency in 2026 dedicated funds to support, among other things, an about concussions, an , and concussion surveillance.

But Wolfkiel still worries about how the CDC firings and the impasse over federal funding will affect brain injury research and prevention efforts in the long term.

“The lack of resources and programs and information that’s out there is really just sort of appalling,” Wolfkiel said.

Federal Funding Uncertainty

Tony Sadowski, the camp’s , remembers when his son, Bryan, suffered a brain bleed that caused a hemorrhagic stroke at age 6. “You’re in the emergency room,” he recalled, “not knowing what version of your son’s going to wake up.”

Now 18, Bryan Sadowski has attended the camp for years.

“We’re very lucky to be able to be here,” the elder Sadowski said.

In 1996, before Bryan was born, Congress passed the Traumatic Brain Injury Act, which has provided many states with grants for TBI research, advocacy, and services. Since then, Congress reauthorized the act four times, largely with bipartisan support, until 2024.

It has remained lapsed since then. Trump’s secretary of the Department of Homeland Security, , supported when he was a senator. Congress is whether to reauthorize funding through 2030.

Despite the lapse in funding, money is still flowing to TBI programs at the CDC and in states, according to , president and CEO of the Brain Injury Association of America.

Congress did appropriate $8.25 million for TBI program activities through the . That’s far less than the $23 million Congress provided for each fiscal year, from 2020 through 2024, the last time it .

“The TBI Act is the only piece of federal funding for traumatic brain injury at the federal level,” Willis said. “We’re aiming to preserve what we have.”

The funding uncertainty has not affected the handful of brain injury camps, including Camp Cranium and in Alabama, because they are nonprofits that mostly rely on private donations.

Back at Camp Cranium, bursts of laughter, whoops of delight, and distant chatter punctuated the humid summer air.

While her fellow campers did archery or art, Brianna Engleman moved between groups, collecting song requests for a dance that evening. When she was 5, doctors performed a to relieve her of debilitating seizures. But the surgery itself can injure other parts of the brain.

She lives in Northern Virginia and first attended Camp Cranium as a teen in 2018. It was her first time being around so many people like her, said Engleman, now 21.

“I’ve gotten more confident,” Engleman said. “It made me think, well, there’s actually good people out there.”

Next time she returns to camp, she said, she plans to do so as a counselor.

This article is from a partnership that includes , , and Ñî¹óåú´«Ã½Ò•îl Health News.

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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.

Ñî¹óåú´«Ã½Ò•îl 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.

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

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

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

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

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

‘I Have No Options’

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

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

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

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

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

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

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

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

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

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

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

A Program Intended To Encourage Work

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

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

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

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

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

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

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

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

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

“The premiums charged in buy-in programs are nowhere near close to the expected costs of covering people,” Burns said. (KFF is a health policy research, polling, and news organization that includes Ñî¹óåú´«Ã½Ò•îl Health News.)

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

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

Falling Through the Cracks

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

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

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

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

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

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

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That could change. In June, the Department of Justice issued 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 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 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, 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 that mandate integration for people with disabilities.

They’re concerned that agencies will stop enforcing disability laws that ensure people aren’t. 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 . 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 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 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 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 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 , 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 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, from the University of Minnesota’s , 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 that addresses homelessness by expanding involuntary treatment and institutionalization, reversing a 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 , 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 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 and poses a higher risk of neglect and abuse.

, 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.”

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More than a decade ago, Noon said, she was diagnosed with adult-onset Still’s disease, a rare type of inflammatory arthritis that can cause rashes, debilitating pain, and fevers. The disease upended her life.

She had been living a typical suburban life in Michigan, shuttling her two kids to activities like cheerleading, choir practice, and track. She was active in the PTA. She managed a bank.

She went from that to crawling to the bathroom because she was in so much pain, “just crying all day long” from being so sick.

Noon, who is disabled, said she couldn’t work for eight years — a time marked by hospital stays that stretched for weeks.

“I honestly thought I was going to die,” Noon said.

So it was a shock when Michigan denied her application for Medicaid benefits last year after she lost private insurance. Worse yet, it came down to an IT error, according to an attorney who helped Noon overturn the denial.

“I can’t afford my medical care. I have to have insurance,” said Noon, who has returned to working.

Deloitte, a multibillion-dollar global consulting firm, has operated Michigan’s Medicaid eligibility system under contracts worth roughly $768 million since 2006, according to contracts reviewed by Ñî¹óåú´«Ã½Ò•îl Health News. Nationwide, Deloitte dominates this important slice of government business: At least 25 states have awarded the company contracts to build or run computer systems that control access to safety net benefits such as Medicaid.

Michigan’s system has incorrectly directed people with disabilities into skimpier benefits that cover limited care or has denied coverage completely, a Ñî¹óåú´«Ã½Ò•îl Health News investigation found. Similar problems were at the center of a class-action suit in Tennessee, , and have occurred in Texas, according to interviews and state records.

The Ñî¹óåú´«Ã½Ò•îl Health News investigations are based on statements from state officials, allegations and declarations in court documents, emails obtained through public records requests, state government information provided to Medicaid enrollees and applicants, and interviews with attorneys and patients or their caregivers.

In an emailed statement, Deloitte spokesperson Karen Walsh said it found “no system anomalies causing routine denials of Medicaid for people with disabilities.”

“There are many reasons why someone may no longer be eligible for a benefit they once received or believe they deserve,” Walsh said. “All of the eligibility systems we support are owned by the states and built to their unique specifications. We will continue to work at the direction of our state clients.”

Lynn Sutfin, a spokesperson for Michigan’s Department of Health and Human Services, said it “is not aware of any widespread or systemic issues” within Bridges, Michigan’s eligibility system for Medicaid, SNAP, and other benefits, “related to disability‑based eligibility pathways.” 

Since 2006, Deloitte’s contracts with the state have said the company is responsible for development, implementation, maintenance, operations, and enhancements to the Michigan system.

Computer system problems foreshadow trouble as states prepare to roll out the most significant and complicated changes to their Medicaid programs in years. Those changes, dictated by President Donald Trump’s landmark One Big Beautiful Bill Act, have states rushing to update their Medicaid computer systems.

Nationwide, on Medicaid have a disability, according to KFF.

“When these administrative systems get overloaded, everyone gets impacted,” said Pamela Herd, a University of Michigan professor who researches bureaucratic obstacles to accessing government benefits. “The systems are going to be really, really strained.” 

In Michigan, Noon was eligible for Medicaid through a program that provides coverage to disabled adults who work. But the state’s computer system didn’t register that she is disabled and said she earned too much to qualify, according to documents reviewed by Ñî¹óåú´«Ã½Ò•îl Health News and interviews with Noon and Anastassia Kolosova, a disability rights attorney who helped her.

Without Medicaid coverage, Noon paid hundreds of dollars out-of-pocket for prescriptions, after scrounging for discount coupons. She takes some of the drugs twice a day.

Without them, “I’m toast,” she said. It was stressful “not knowing if my medicine’s going to be $50 or $500 this month, because it changes constantly.”

Noon said her doctor agreed to fewer visits to avoid medical bills.

“It was kind of a nightmare,” Noon said.

‘I Just Wanted To Give Up’

Medicaid, a safety net health program jointly run by the federal government and states, people with low incomes or disabilities. State governments rely on companies like Deloitte to design and operate computer systems that assess whether people qualify for Medicaid or food aid through the Supplemental Nutrition Assistance Program, commonly known as food stamps.

That technology has a history of errors that deprive eligible people of benefits, earlier Ñî¹óåú´«Ã½Ò•îl Health News investigations have shown. As reported previously, Kenneth Smith, a Deloitte executive who leads its national human services division, said Medicaid eligibility technology is state-owned and agencies “direct their operation” and “make decisions about the policies and processes that they implement.”

“They’re not Deloitte systems,” he said, noting Deloitte is one player among many who together administer Medicaid benefits.

States are under immense pressure to update their eligibility systems on a tight schedule to adhere to requirements in the Republicans’ sweeping 2025 tax and spending law. Companies including Deloitte, Accenture, and Optum are being paid millions in taxpayer funds to make the changes, which are projected to strip Medicaid from roughly 7.5 million people and SNAP from 2.4 million people by 2034.

Many coverage restrictions in the new federal law don’t apply to seniors, children, or people who are disabled, such as Noon. Nonetheless, the law’s demands on state agencies and the computer systems they oversee will disrupt benefits, advocates for Medicaid enrollees and other healthcare experts said in interviews.

The same systems also need to correctly classify why someone is eligible for Medicaid — and therefore which rules and restrictions apply.

The law’s SNAP restrictions began to take effect in 2025, and major Medicaid provisions begin later this year, generally after the midterm elections.

Kolosova is a supervising attorney with Disability Rights Michigan, a legal advocacy organization for people with disabilities. She said she has been unable to get a meeting with Michigan officials to understand the underlying problem that deprived Noon of health coverage.

State records show Deloitte has held contracts for at least 14 years for Bridges, Michigan’s eligibility system for Medicaid, SNAP, and other benefits. In its attempts to secure more business, the company often cites its nationwide footprint in Medicaid operations.

“Deloitte understands Bridges,” and its history in Michigan makes the company “the ideal vendor,” the firm said in its . Given Deloitte’s work on similar systems in 31 other states, , “Michigan benefits from our technical expertise drawn from across the nation.”

But advocates who work with people with disabilities say Michigan’s computer system has failed to recognize when certain adults should receive Medicaid benefits.

Problems aren’t unique to the Great Lakes State. Medicaid beneficiaries who brought a against Tennessee in 2020 said the state’s Deloitte-built system “does not reliably test for eligibility” for several categories of people with disabilities. The firm’s is worth $1.12 billion over a decade.

A federal judge in 2024 , ruling that Tennessee violated federal law and the U.S. Constitution. The lawsuit does not name Deloitte as a defendant.

In Michigan, a from the state’s Office of the Auditor General said government agencies “did not provide effective project administration” and failed to ensure that the state could “independently maintain and operate Bridges” because “the contractor did not transfer knowledge and skills” to state officials, according to the audit.

The auditor’s report said that, as a result, Deloitte’s original contract — valued at roughly $70 million — ballooned by $50 million over the initial cost, a 71% increase. State records show Michigan would go on to add millions more, bumping the cost of Deloitte’s initial contract to $124.1 million.

The audit said maintaining the contract would result “in significant additional costs.”

Sutfin said that “the state is now fully capable of operating and maintaining Bridges independently.”

Deloitte’s in Michigan — worth $197.4 million — is set to expire in 2030.

Noon applied for Medicaid in August, she and Kolosova said. In September, the Michigan Department of Health and Human Services sent a notice denying her coverage, citing incorrect income information and stating she wasn’t disabled, according to Kolosova and state documents reviewed by Ñî¹óåú´«Ã½Ò•îl Health News.

Noon said that when she called the state for help, state workers “didn’t know anything about” the Medicaid program she had applied to, Freedom to Work.

“I can’t tell you how many times I just wanted to give up,” she said.

For some people with disabilities, Medicaid is supposed to count only half their earnings when assessing whether they should receive benefits. That didn’t happen. Kolosova said she thinks Michigan’s eligibility system didn’t identify Noon as disabled, even though the state “already had all the information they needed” to show she was.

By failing to recognize her disability, the state used the wrong income formula and said Noon earned too much to qualify for Medicaid, she added. Deloitte and Michigan declined to respond to a detailed list of questions about Noon’s experience.

Kolosova said Disability Rights Michigan has seen a growing number of calls from people about Freedom to Work benefit denials. “Maybe two or three a month,” she said.

“There’s something wrong with the system if they’re relying on individual caseworkers to catch this,” Kolosova said. “The system needs to work.”

Enrolled in the Wrong Coverage

Noon’s experience isn’t the first time in recent years that people with disabilities have been denied benefits by Deloitte-run eligibility systems.

In Texas in 2023, Lilly Livingston, who has Down syndrome and is now 22, was abruptly cut off from Medicaid benefits, according to Livingston’s mother, Marie. She has undergone numerous surgeries to reconstruct her severely misaligned jaw, which caused sleep apnea and impaired her speech and chewing ability. She relied on an array of Medicaid services, including speech and occupational therapy.

When Livingston lost benefits, she was wrongly enrolled in Healthy Texas Women, a limited program that provides breast and cervical cancer screenings and family planning services.

“Trying to fix that was a nightmare,” Marie Livingston said.

Terry Anstee, an attorney with Disability Rights Texas, intervened.

In a September 2023 email with the subject line “URGENT,” Anstee begged a Texas Medicaid eligibility worker for help.

Some unknown “error” had occurred and stripped Livingston of her benefits, Anstee said in an email he sent to a state Medicaid staffer. “Lilly has had 2 major surgeries, and her recovery is contingent on Medicaid.”

It was clear that Livingston qualified for Medicaid through multiple paths, Anstee said: “It never made any sense.”

Deloitte declined to respond to a detailed list of questions about Livingston’s case. Jennifer Ruffcorn, a spokesperson for Texas Health and Human Services, confirmed that Livingston was erroneously enrolled in Healthy Texas Women. However, Ruffcorn said, Livingston did not experience a lapse in Medicaid coverage in 2023.

Anstee disputed the state’s characterization: “A glance in the system by a Texas HHS press officer or other staff 3 years after the fact may not tell the full story or show the issues that Ms. Livingston endured in August and September 2023. Ms. Livingston experienced lapses in coverage.”

The problem Livingston encountered in Texas was also reported in Michigan.

In 2024, mental health services advocates in Michigan raised red flags about a similar error: People with disabilities were being enrolled in a limited Medicaid program covering sexual health and family planning services. Plan First covers only services and treatment for sexually transmitted infections. It doesn’t provide the comprehensive coverage that people with disabilities require.

But some enrollees were “being automatically enrolled in Plan First,” Malcolm Kletke, a lobbyist representing the Community Mental Health Association of Michigan and other mental health providers, wrote to a Michigan health official, according to emails obtained by Ñî¹óåú´«Ã½Ò•îl Health News through a public records request.

These enrollees had “long received Medicaid due to their disability,” and getting enrolled in the wrong plan meant losing access to “services essential to their recovery and quality of life,” Kletke wrote in September 2024 to Amy Epkey, a senior deputy director of the Michigan Department of Health and Human Services.

In fact, the state’s own records show that Medicaid enrollment for those with disabilities did decline.

Over roughly four years, enrollment in the Medicaid category that includes people with disabilities , according to the Michigan House Fiscal Agency, which provides nonpartisan analysis to lawmakers. The drop was unusual given people generally leave the program because of death or having recovered from a temporary disability, and it’s unlikely those numbers would balloon, said Robert Sheehan, who was the mental health association’s CEO at the time.

Sutfin said the state examined the decline in enrollment and found “several contributing factors, including post‑covid renewal patterns, changes in beneficiary circumstances and movement to other coverage categories.”

After inquiries from Ñî¹óåú´«Ã½Ò•îl Health News, the Michigan health department acknowledged in April that it had made changes to “address concerns raised by advocates.”

Michigan’s computer system now prevents approval of Plan First benefits until all other coverage options are evaluated, Sutfin told Ñî¹óåú´«Ã½Ò•îl Health News. Sutfin said the changes were implemented but “not to correct system errors.”

Sutfin said the state submitted a change request to Deloitte to address this problem. The fix was implemented in January 2025.

Until presented with Kletke’s email, the state had denied there were problems related to Plan First.

Even after the state addressed that issue, other problems persisted.

Noon’s coverage denial notice arrived in September. She fought with the state for months to reverse its decision, “paying cash for all of the medicines through these appeals over and over and over again.”

It was only in January that she was approved.

“I literally cried,” Noon said. “It was a really big deal.”

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

Her team tends to “cringe” anytime they hear about patients having to fill out lots of paperwork, like when applying for Social Security Disability payments, because it can be a difficult, burdensome process.

Thornton tries to support her patients, she said, but understands the limits of her training.

“A lot of times the forms are so complex that I don’t really know what’s the true definition of what this form is asking me,” she said. “We refer them to a disability provider.”

Doctors including Thornton worry they’ll see more of those kinds of requests because of coming changes to Medicaid, the government health insurance program for people with low incomes or disabilities. Starting Jan. 1 in most of the country, some enrollees — mainly adults without dependents — must prove they’re working or performing other qualifying activities 80 hours a month.

issued in June say people can obtain an exemption if they’re “medically frail,” or too sick or disabled to work, which may require them to submit documentation from a medical professional. That standard prompted a lawsuit at the end of June from dozens of mostly Democratic-led states and has Thornton worried it could force her and her staff to assess things like how much a patient can lift or how far they can walk.

“If I’m asked, ‘Is this person medically frail?’ What does that even mean?” Thornton said. “I don’t know, and I’ve been doing this for 25 years.”

Last year’s GOP tax-and-spending law known as the One Big Beautiful Bill Act established the work rule, which will affect an estimated when more states start enforcing it. The mandate is expected to cause a larger increase in the number of people without health insurance than any other part of the law, a health information nonprofit that includes Ñî¹óåú´«Ã½Ò•îl Health News.

Doctors say they aren’t trained to accurately assess whether someone’s health keeps them from working. Many don’t have time to handle another administrative task that takes them away from patient care. And being involved in whether someone gains access to a public benefit undermines the doctor-patient relationship, several doctor groups and physicians said.

“When you introduce unnecessary, non-evidence-based, confusing, and bureaucratic policies like this into clinical care, it just raises the level of moral distress for providers,” said Christopher Chen, a senior healthcare adviser at the consulting firm Manatt.

The Centers for Medicare & Medicaid Services declined to respond on the record about doctors’ concerns. But the agency confirmed that enrollees may need to get documentation from a clinician to prove they’re too sick to work and said states would make final determinations.

The Trump administration has previously said states should use available data sources — such as medical claims and payment data — before making patients submit proof of medical frailty from a provider.

“Documentation should be relatively easy to provide,” Mehmet Oz, the CMS administrator, said during a June 1 press call.

But deciding whether a patient is too sick to work is a subjective, high-stakes decision, said Chen, who also practices as a hospitalist at Valley Medical Center in Renton, Washington.

“We’re trained to take care of people,” he said. “We’re trained to learn about someone’s symptoms, make diagnoses, treat them. We’re not trained to make these kinds of work determinations.”

When they apply and every six months after, Medicaid enrollees subject to the rule will have to prove that they’re performing the minimum monthly hours of qualifying activities — or will likely have to prove as frequently that they qualify for an exemption.

If states can’t find sufficient evidence that someone is too sick to work, that person will be able to self-attest to it under penalty of perjury — but only for a short time. States may take someone’s word that they’re medically frail twice in 2027 and only once in 2028.

Last month, 25 mostly Democratic-led states over the final regulations, arguing the medical frailty standard would be too hard for enrollees to meet — and for states to assess.

The standard, they argue, requires state Medicaid agencies to “take on the role of occupational medicine experts” or adds that burden to physicians who are not necessarily trained in occupational medicine.

CMS declined to comment on the litigation.

The Trump administration has crusaded against fraud in government health programs including Medicaid. It recently — including medical professionals — over more than $6.5 billion in alleged fraud schemes.

CMS has said it will keep a close watch on how states administer the work requirements and may take corrective action if states step out of line.

That has doctors concerned about the potential repercussions if they incorrectly assess whether someone is too sick to work, as farfetched as those worries might be, said Rahul Vanjani, a primary care and addiction medicine physician and researcher at Brown University.

“We, using our imaginations, wonder if someone is auditing these forms in the background and if they’re going to reach out to the licensing board.”

The country is short of primary care providers, and it could be hard for people seeking an exemption to find a clinician to help them document that they’re too sick to work, doctors said.

It will be even more challenging for someone without insurance, said Jennifer Wagner, who researches Medicaid eligibility at the left-leaning Center on Budget and Policy Priorities.

“How could an applicant who doesn’t have health coverage get a doctor’s note?” she asked.

The American Medical Association, the nation’s largest professional association of doctors and medical students, lobbied federal officials to change the standard for documenting medical frailty in the days before the final regulations were made public.

In May, the AMA sent to Oz, the CMS administrator, arguing that forcing doctors to attest to their patients’ ability to work wouldn’t just be an administrative headache but would affect the way they interact with those in their care.

In a statement, the association’s president, Willie Underwood III, said the work rule “transforms the clinical encounter into an eligibility gatekeeping process.”

“Patients will likely sense that shift,” he said. “And if they begin to suspect that what they share with their physician could affect their coverage, the conditions for open and honest communication will start to break down.”

Doctors have a fixed amount of time to spend with patients and would rather focus on treating medical conditions than filling out forms, especially ones that put them in a position to “represent the state,” said John Ayanian, an internal medicine physician and researcher at the University of Michigan.

“Their first obligation is to serve the best interest of their patients,” Ayanian said.

Lauren Davis, an attorney with Community Legal Services of Philadelphia, helps clients navigate other public benefit programs, such as the Supplemental Nutrition Assistance Program, which has a similar work rule. Enrollees can get an exemption from it if they’re too sick to work.

She recalled a client with a cognitive condition that affected her memory. The client’s doctor wasn’t comfortable filling out an exemption form without seeing her in person, but she kept forgetting to make an appointment and eventually gave up, said Davis, who worries Medicaid enrollees could face similar barriers to getting exemptions.

“This person is eligible,” Davis said. “The reason that they’re not able to get what they need to show that they’re eligible is because of their medical condition.”

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

“All nonspeakers above the age of 5 should be given the opportunity,” typed Bonker, who is 28 and cannot talk. Her mother, Virginia Breen, held a wireless keyboard for her. They sat on a hotel patio before an April 27 meeting with a senior aide to Health and Human Services Secretary Robert F. Kennedy Jr.

“We are misunderstood and underestimated,” Bonker typed, occasionally humming or lightly groaning as she considered where to place a slender forefinger on the keyboard.

Assisted spelling is used to help nonverbal people communicate by pointing to letters on boards or using keyboards with physical help from another person.

Supporters say assisted spelling has improved the lives of thousands of people with autism, such as Bonker, and they have powerful allies. Kennedy appointed Bonker and another autistic “speller,” as they call themselves, to a 20-member autism panel including several parents and others who have attributed autism to childhood vaccinations.

At the reconfigured panel’s first public session on April 28, three other members said their nonspeaking adult children were learning to communicate through spelling. The panel issued a resolution with  stating that “robust” communications programs are essential for autistic people. Bonker has urged the Department of Health and Human Services to support training in assisted spelling for those who want it.

But leading for , as well as those representing and , that these methods — premised on the idea that people with autism have the normal range of cognitive powers but are imprisoned in malfunctioning bodies — are flawed or fraudulent.

Other, validated methods enable nonspeakers to communicate through digital and analog pictures and letter boards. But assisted spelling isn’t autonomous communication, critics say: Consciously or not, the board holder may be influencing or responsible for the typed or pointed-at words — as with a Ouija board.

For many parents in Kennedy’s Make America Healthy Again community, the spelling controversy is angrily ringing the same bells as the notion that vaccines cause autism — which they refuse to consider debunked. As some people see it: Established medicine damaged them with vaccines and now refuses to accept a helpful treatment.

People with autism are “trapped in bodies that have betrayed them because the medical establishment has betrayed them,” said Louis Conte, who has a child with autism, in a of a Kennedy-allied MAHA publication.

By limiting access to spelling, “you are not just limiting expression, you are erasing identity,” said Katie Sweeney, the mother of an autistic adult who is affiliated with an anti-vaccine , at the autism panel meeting.

Mainstream autism experts and advocates in March convened the Independent Autism Coordinating Committee as a counter to Kennedy’s panel. At the new group’s meeting, one member spoke out against the spelling methods.

“In this underfunded disability environment, I don’t want a single penny diverted to debunked interventions like spelling,” said , a senior lecturer in history at the University of Pennsylvania and an who described her 27-year-old son as “profoundly autistic.”

It’s not only a waste of time, she said later in an interview, but “people subjected to spelling are not given access to evidence-based education. Every interaction turns someone like my son into a puppet, and I find that very objectionable.”

A Patchwork of Perspectives

The universe of autistic people, their parents, researchers, advocates, and service providers is a broad, acrimonious spectrum. Some say that vaccines or chemical exposures caused a massive increase in autism, others that diagnostic changes account for most of the increase. Some seek mainstream or alternative treatments, some demand classroom inclusion, and others want residential treatment. Some people with autism say it’s a difference, not a disability.

“When I tell the parents of a young child they have autism, it’s a tragedy,” said Audrey Brumback, a child neurologist at Dell Medical School at the University of Texas-Austin. “When I give the same diagnosis to a teenager, it’s good news. It means, ‘There’s nothing wrong with you; you’re just autistic.’”

Scientific medicine has failed to deliver good treatments for autism. After four decades of concerted research, “the results have for the most part been very disappointing,” said David Mandell, a professor of psychiatry and pediatrics at the University of Pennsylvania.

Severely autistic children — those requiring round-the-clock care with ailments like epilepsy and generally lacking in verbal language — account for of all U.S. autism diagnoses. Caring for them may mean dropping careers and spending vast sums on therapy. “They ought to spell special education with a dollar sign,” said Tracy Simmons, whose 17-year-old son, Noah, has autism.

Many parents of autistic children have tried vitamins and diets that exclude wheat, soy, or dairy. Some have turned to hyperbaric oxygen chambers, others to pig hormones to repair damage spuriously attributed to measles-mumps-rubella vaccines, and infusions of metal-leaching chemicals to remove traces of heavy metals in childhood shots. Recent regimens include camel’s milk, broccoli extract, and stem cell injections obtained at great expense in Panama and India.

In September, the White House touted leucovorin, used in some cancer care and for an ultra-rare genetic condition. Marty Makary, then-commissioner of the FDA, said the drug could help 50% to 60% of kids with autism.

There’s little evidence behind any of these treatments, Brumback said. Many parents try multiple remedies at once; if a child’s condition improves, it’s hard to tell what worked — or whether the child simply grew out of a problem.

Noah the Speller

During a Zoom session in which he typed on a keyboard held by his mother, Noah Simmons wrote glowingly about the world opened to him by two years of learning to spell and type.

“Im a new person. I have friends, I write, climbing,” he typed. “Conversation. I can have one. I have a say. Im human now.”

Later, at an indoor climbing center in Gaithersburg, Maryland, Noah scrambled nearly to the top of the wall before he slipped. He glided down the rope and slapped a high five with his climbing instructor as his mother approached. She carried a laminated sheet with the alphabet on it.

Tracy Simmons held the paper while Noah stabbed at the letters one by one, ending with a flourishing swipe at the exclamation mark: “Im going to crush it again!”

There, and at a later keyboard session at home, Noah seemed in control. But when Tracy stopped offering verbal prompts and encouragement, or stopped holding the board, Noah often got lost and signaled a need for help.

Tracy Simmons acknowledges that whoever holds the board could be steering a speller’s words. Despite his climbing prowess, Noah lacks fine motor skills, is anxious, and has trouble controlling his body, she said.

“He’s working on becoming an independent typer. He can do it short amounts of time,” she said. “But at times he gets overwhelmed.”

The method used by Noah and his mother came into use in the United States in the early 1990s. At first, trainers guided the arms or hands of the spellers as they pointed to a letter board. The idea was that the intelligence or literacy of severely autistic people was trapped in bodies they couldn’t control. They needed help physically learning to spell, first with a pencil or finger pointing at stenciled or printed letters, and eventually by typing on a keyboard.

Within a few years, however, dozens of experiments had shown that the facilitators, not the autistic people, were doing the spelling. A that the spellers could identify words or objects without their facilitators.

In addition, the technique has resulted in — sometimes in the autistic person’s life skeptical of the spelling process.

Next came the Rapid Prompting Method, devised by Soma Mukhopadhyay, an Indian mother of a boy with profound autism, who brought her system to the United States in 2001. Elizabeth Vosseller, a speech pathologist in Herndon, Virginia, launched a nearly identical method, Spelling to Communicate. In both, the facilitator, not the speller, holds the letter board. But each method relies on prompts.

Mukhopadhyay and Vosseller, who did not respond to requests for comment, have each declined to submit their systems to the kind of testing that disproved facilitated communication. Bonker said calls for such tests show a lack of respect for the disabled.

Asked why, after 23 years as a speller, she couldn’t communicate alone or without her mother holding the board, Bonker typed, “I can do it in certain environments that don’t include interviews with strangers.” Severely autistic people need coaches to help control their anxiety, Breen said.

Another star of the speller world, Woody Brown, spoke through his mother with Jenna Bush Hager on the Today show on April 1. The Browns were promoting his novel, Upward Bound, which became an immediate New York Times bestseller after its March release. During the segment, Mary Brown spoke in complete sentences that she said came from Woody, but the letters he typed, as far as the program’s viewers could see, did not correspond to her words and often looked like gibberish.

This raised questions about how Woody Brown could be the author of what critics described as a brilliant, sensitive novel. They pointed out that Mary Brown has worked as a Hollywood script analyst. The Browns did not respond to efforts to reach them for comment.

“Spellers” are best known to the public through the success of The Telepathy Tapes, which briefly unseated The Joe Rogan Experience as the country’s most popular podcast early last year. In The Telepathy Tapes’ first season, people with profound autism were allegedly revealed as clairvoyant superhumans.

The evidence for their telepathic abilities was produced through spelling. The host showed spellers and facilitators two things, and the speller, with the facilitator present, typed out what the facilitator saw. Viewers had to wonder whether this was evidence of telepathy or confirmation of what critics have said all along: that the facilitator is the one controlling the words, often by feeding the speller subtle cues.

Bonker said she appreciated the Telepathy Tapes’ host for including her nonprofit group’s information on its website. As for telepathic skills, “I believe nonspeakers have many gifts,” she said. “And I believe what they say.”

The debate over spelling is playing out in boards of education and courtrooms, where parents of autistic children seek aid for their children’s spelling lessons.

In New York state in March, anti-vaccine on state Sen. Patricia Fahy, the Democratic chair of the disabilities committee, after she inserted language into a disability rights bill requiring that payments go to “verified” communication methods that assured patient autonomy.

Vikram Jaswal, a University of Virginia psychologist who works with spellers, said he’s seen people with severe autism who can type independently, though only a handful have that ability out of the couple of hundred spellers he’s met. More research is needed to figure out who can best benefit from the technique, he said.

Tracy Simmons believes in the method, and so does her son — assuming he’s in control of what he types.

On a recent morning, Tracy read aloud a beautiful escape-from-Alcatraz story she said Noah had written with her help and that of his spelling trainer. “He writes all the time in his head,” she said, but it could take years for her son to consistently type independently.

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News 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, Ñî¹óåú´«Ã½Ò•îl Health News 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 Ñî¹óåú´«Ã½Ò•îl Health News 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 Ñî¹óåú´«Ã½Ò•îl Health News. 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 Ñî¹óåú´«Ã½Ò•îl Health News.

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.”

Ñî¹óåú´«Ã½Ò•îl Health News data reporter Maia Rosenfeld contributed to this article.

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News 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.”

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .