Casey Means and MAHA Remove the 'Public' From Public Health
The Office of the Surgeon General is responsible for communicating scientific information to the public and addressing public health issues. Means' record would normally be considered antagonistic toward this fundamental goal, but Trump has praised the nominee as having "impeccable 'MAHA' credentials." Means describes herself as someone who left "traditional medicine," and has expressed health beliefs that flirt with pseudoscience and closely align with those of Robert F. Kennedy Jr.
Co-author of Good Energy: The Surprising Connection Between Metabolism and Limitless Health and co-founder of Levels (a company that sells continuous glucose monitors), Means has peddled health claims that are questionable at best and dangerous at worst. Like other wellness influencers, she has dabbled in some Goop-esque activities, like consulting with a spiritual medium and taking part in a full moon ceremony, which are a little woo-woo but don't harm anyone else. Of greater consequence to public health is Means' skepticism of vaccines. She has also called birth control use "disrespect of life" and endorsed the supposed health benefits of raw milk. The prospect of having a surgeon general who believes such things is terrifying.
Beyond the pseudoscience, Means' general orientation toward health is out of touch with the needs of average Americans. She has built her career and reputation on promoting lifestyle choices such as healthy eating and exercise. From afar, her takes may appear sensible, and at times, even compatible with sound medical advice. A healthy diet and exercise are important, but they alone do not translate to good, humane policies.
Means has suggested that health issues like "depression, anxiety, infertility, heart disease, erectile dysfunction, type 2 diabetes, Alzheimer's dementia, [and] cancer" are "under our control and simpler than we think." Simpler for whom? An emphasis on lifestyle ultimately assigns structural and institutional problems to individual Americans to solve for themselves. In a country where wealth buys health, how many Americans can afford to insulate themselves and their families from risks of disease and disability? The federal minimum wage has been stagnant at $7.25 since 2009. Meanwhile, the cost of necessities like housing, food, and child care have increased precipitously.
WASHINGTON, DC - MAY 12: U.S. Health and Human Services Secretary Robert F. Kennedy Jr. speaks alongside President Donald Trump during a press conference in the Roosevelt Room of the White House on May 12,...
WASHINGTON, DC - MAY 12: U.S. Health and Human Services Secretary Robert F. Kennedy Jr. speaks alongside President Donald Trump during a press conference in the Roosevelt Room of the White House on May 12, 2025, in Washington, DC. MoreIn her "health wishlist" for the Trump administration, Means says we need leaders who will "inspire people to care about their health, the food they eat, and their fitness." Americans do not need inspiration. Americans need access. It is cruel to push the idea that people are unhealthy simply because they do not care. Our most urgent public health problems cannot be solved with personal empowerment and lifestyle choices. For instance, 7.2 million children live in food-insecure households. Meanwhile, the House of Representatives is planning to cut $12 billion from federally funded school meal programs.
Health care is also inaccessible to many Americans because, unlike many of its peer countries, the U.S. does not offer universal health coverage. Even for those who do have health insurance, coverage is often insufficient, causing many to accrue medical debt. The Trump administration has added new public health problems: the Food and Drug Administration recently suspended quality control for milk, the Department of Agriculture withdrew a proposal to reduce Salmonella in raw poultry products, and the Environmental Protection Agency has loosened restrictions on mercury pollution. Meanwhile, Kennedy continues to fuel vaccine hesitancy amid a national measles outbreak.
MAHA priorities are misaligned with public health needs. Means' sunny website—where she promotes her book, recipes, and newsletters—frames good health as an individual project. Means' wish list to the Trump administration proposes actions that would address processed foods, "Big Pharma," vaccine safety, alternative medicine, and paternalistic restrictions on SNAP. It is apparent that her and Kennedy's health concerns reflect the airy worries of the rich. Their brand of health care is for people who can choose to be healthy, people with the time and money to pursue health optimization, and people comfortable enough to be fussy over food dyes.
Pandering to the desires of the upper class, MAHA pushes products and services that are out of reach for the average American. The surgeon general is supposed to be the nation's doctor. Means is just an entrepreneur who peddles an expensive lifestyle.
Catherine Tan is an Assistant Professor in Sociology at Vassar College. She is the author of Spaces on the Spectrum: How Autism Movements Resist Experts and Create Knowledge, published by Columbia University Press.
The views expressed in this article are the writer's own.
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2 hours ago
- Business Insider
81 and working to survive
Noah Sheidlower spent two days following Lydia and Bill Hinds, a married couple of nearly 30 years, who say they're just scraping by in central Connecticut. He reviewed their financial records for this story. He also interviewed more than 90 workers in their 80s and 90s, and 30 researchers and nonprofit leaders focused on older Americans at work. This story is part of a series on people working past 80. Lydia Hinds, 81, collapses onto her red couch, takes a deep breath, and lets out a defeated yell. She just returned home from what was supposed to be a five-hour shift wiping down appliances and helping customers at a Home Depot in Berlin, Connecticut. In the first four hours, she paused several times to catch her breath, so she clocked out an hour early. "I feel trapped working, but I can't stop working," Lydia says, sitting up to cuddle her basset hound, Brigette. Her husband, Bill, gives her a kiss but lets her be. The 90-year-old would like to get a job to help Lydia pay the bills, but because of health problems, there's little he can do. "I feel so guilty that I can't work," Bill says. "You can't work because of your age and your health issues," Lydia snaps back. "There's no sense feeling guilty about it." A certificate for a regional award that Lydia received from Home Depot, praising her dedication to the job, sits on their coffee table. Since starting in 2022, she's received two promotions, despite being unable to climb ladders or lift heavy objects because of her heart failure diagnosis last year. In a photo attached to the award, she's smiling from ear to ear. Now, the best Lydia can muster is a muted grin. If she stopped working and lost her $300 weekly pay after taxes, she and Bill fear they couldn't afford rent. A few weeks back, they had 44 cents in savings. They weren't sure what they would eat for dinner. Three printed-out job applications for remote customer service positions lie near her award. She doubts she'll get further than one interview, but each application is a glimmer of hope. "What company would hire an 81-year-old?" Lydia asks. "Hopefully one of them." A better-paying, less intense job could give them the boost they've yearned for, especially as Lydia's weekly hours some weeks have been cut from 22 to 17. Lydia is one of over half a million Americans over the age of 80 who still work as managers, retail salespeople, lawyers, drivers, and other jobs — over 4% of the Silent Generation. That number has gone up to 4.2% from 3.6% in the last decade due to various factors making full retirement impossible or undesirable for a growing number of seniors, according to a Business Insider analysis of Census data. "We do know that the 75-plus demographic is the fastest growing segment of the workforce," says Carly Roszkowski, vice president of financial resilience at AARP. Americans age 75 and over are twice as likely to be in the workforce now as they were in the early 1990s, according to Bureau of Labor Statistics data. Those in their 80s or older are part of the Silent Generation of Americans born between 1928 to 1945. They grew up against the economic backdrop of the Great Depression and World War II, and learned to be financially cautious after seeing what their parents endured. However, they didn't have access to the same kind of personal finance advice and tools that are prevalent today. In recent months, more than 90 workers aged 80 and older told Business Insider in interviews how health challenges, loneliness, and increased cost of living all play into their decision to work at their age. Over a dozen say all they could find were minimum-wage jobs, and many work despite medical diagnoses. The financial strain bleeds into their relationships with spouses and children, and exacerbates a pervasive feeling of isolation. Right now, the Hindses take in $4,600 a month from their Social Security, Bill's pension from a TV station in Connecticut, and Lydia's monthly wages. Monthly rent for their one-bedroom apartment in a 55-plus development is $1,400, their car payment is $625 a month, their car insurance is $236 a month, and their Medicare combined is $426 a month. On top of that, they have emergency medical expenses, medications, grocery and gas bills, and utilities. They're left with close to nothing at the end of the month. "I keep thinking, 'What happened that we can't go out?'" Lydia says of the couple's social life. "But the rent's gone up, and it's eaten up most of the Social Security money. We're in deep trouble." Business Insider's '80 over 80' series draws on interviews with more than 80 people who are working past their 80th birthdays about their careers, retirement planning, living expenses, healthcare, and life lessons. Fill out this form to contribute to the series and read more here: How these 80-somethings are stitching together work, savings, and Social Security to get through the month The anti-aging secret these 80-somethings swear by: work Meet the 90-somethings with lessons to share on life, work, and money I'm 88, still working, and living with my stepdaughter. I lost most of the half a million I saved, but I still feel fulfilled. I'm 85 and don't have retirement savings — but I'm not too worried about it Healthy enough to work into their 80s Bill and Lydia say their financial mistakes were ones anyone could make. They never gambled, their investments weren't too risky, and they worked in decently paid jobs their entire careers. Still, some miscalculations, unavoidable health issues, and poor timing have put them in a wobbly financial situation. "Every month when it's time for my Social Security check, I get really tense. I'm so afraid it's not going to come," Lydia says. "If we don't get that, we're out of here. We're on the street." The number of cost-burdened households — those that spend more than 30% of their income on housing expenses — age 65 and older has steadily risen since the early 2000s. Research from the Joint Center for Housing Studies at Harvard University found that among adults age 75 and older who live alone in metro areas, only 13% could pay for assisted living without having to dig into their assets. "I wish I had saved just $20 a week in my retirement account all those years ago," Lydia whispered during her shift. Even a small nest egg would relieve her stress. She has under $1,000 left in her 401(k) from Home Depot, down from nearly $10,000 at its peak, as she pulled out money twice for medical and day-to-day costs. In 2022, Bill and Lydia needed additional income. During the pandemic, they'd both suffered from health issues, including Bill breaking his leg, which kept them from working. They relied solely on Social Security, Bill's small pension of $335 a month from his time at the local TV station in advertising sales, and some savings. But when they couldn't sustain their lifestyle anymore that year, Lydia drove down the road to the closest Home Depot and applied for a job. Home Depot hired her at $16 an hour in the electrical department. She was 79. "I loved it at first, and I still enjoy my customers," Lydia says. "But when I started there, I didn't know I had heart failure." When Lydia noticed tasks like sewing curtains and gardening knocked her out, a doctor found that her heart was not pumping nearly enough blood. At work each day, she's expected to clean appliances, keep aisles tidy, and help customers with their needs for $19.55 an hour. Still, she kept her sense of humor. "When I got the echocardiogram, I joked with the doctors and told them, 'I forgot to tell you I'm pregnant,'" Lydia says. "They got a big laugh out of that." As her condition worsened, she would have to catch her breath just from walking down an aisle. Conversations with customers and coworkers, who call her "Ms. Lydia," keep her ignited. She says she's thankful that Home Depot has given her time off with pay, as part of her sick leave benefits, to go to doctors' appointments. She used Connecticut's paid family medical leave for six weeks because of her heart failure diagnosis. Home Depot didn't respond to a request for comment for this story. Lydia isn't alone in her battle between work and health. Similar circumstances have pushed many of those who are healthy enough to continue working. Others in her position may need the income, but aren't physically able to work. Beth Truesdale, a research fellow at the W.E. Upjohn Institute for Employment Research, says a "shocking number of people" are pushed out of the labor force in their 50s and 60s, let alone their 70s and 80s. The percentage of people who are working drops sharply starting around age 51, across all genders and education levels. Truesdale's calculations from 2020 showed a roughly 20-point fall in the percentage of people working at age 61 compared to 51. That's not mainly because of early retirements, she says. It's because of factors like poor health, caregiving responsibilities, and physically demanding roles. Dozens of older Americans told BI over the last year that they had no choice but to retire earlier after a diagnosis or injury. Many rely solely on Social Security, which is about $2,000 monthly on average. Lydia's coworker, Tony Sparveri, 80, works for a similar reason as her. He started part-time at Home Depot two decades ago in the gardening department before transitioning to a full-time kitchen and bath design consultant. He's not on his feet all day, and says the work makes him feel youthful. He earns more than Lydia and works mostly for financial reasons, as taxes on his home and rising costs have burdened him and his wife. "Mentally and physically, I feel really good, and that's a blessing," Sparveri says. Still, he's concerned that many older people will continue to be hurt by rising prices and economic uncertainty. "People are suffering, and I don't want to put myself in that position." Love keeps them going through financial ups and downs One afternoon, Lydia searches every nook and cranny of the apartment in search of a CD by Bill's former jazz ensemble, recorded in 1996 with jazz pianist Bill Mays. He walks to a cabinet and pulls it out. She puts it into the CD player and starts dancing, humming the melody to the first track. Bill looks on with a slight smile. He started playing piano when he was 3, performed with a swing jazz band, and hosted an FM jazz radio show in Austin. "Most of those people are dead," Bill says of his old bandmates. "Well, you're not," Lydia quips. Bill and Lydia have lived in their current apartment for six of their nearly 30 years of marriage. This is Bill's second and Lydia's third marriage, and each has children from previous spouses. Lydia lost much of her savings in her 40s when her second husband abruptly closed one of the successful office and mail service stores they started together. He declared bankruptcy very shortly after. "It all went down the tubes," she recalls, noting she was able to get a previous job back shortly after. "I still don't know how I got through that." They didn't know each other at the time, but while Lydia was recovering from that financial setback, Bill was making $90,000 a year from performances and his work at the TV station. Lydia met Bill through a dating service in 1995. He picked her up for their first date in a white limousine, wearing a camel-hair coat. "I was going on dates with three women at the time, but when I saw her, I dropped them all," Bill says. "He had glasses three times bigger than he needed, which I took care of," Lydia jokes. Like any marriage, theirs has had its ups and downs. After a brief stint in Florida, they returned to Connecticut and spent most of their savings on a house that required more repairs than they had expected. Lydia had moved on from the now-closed mail stores and was working as a real estate agent, but says she rarely made enough money to be comfortable. Bill had left the TV station in 1994 to focus on his band and was playing at weddings, teaching piano lessons, and selling pianos. They had been able to save a little throughout their career, but never enough to think they could retire. "We put almost all of our money into that house," Lydia says. She says they bought it for $185,000 in 2002 and spent more than $100,000 on renovations. "It looked a lot better, and we figured we'd flip it and do OK." Then the 2008 recession hit "like a ton of bricks," Bill says. At the time, they had $75,000 invested in the market, but as the market fell, they pulled from their account to pay for their increased mortgage and property taxes. The couple hoped they'd get some money out of the home they'd renovated. But they defaulted on their mortgage in 2015, and a forced sale brought only $115,000. They filed for bankruptcy. The income from a side business Lydia had started to help people downsize their homes, and the piano lessons that Bill gave, weren't enough. They were among the more than 10 million Americans who lost their homes due to the Great Recession. The S&P 500 took over five years to fully bounce back after dropping more than half its value from its high in 2007 to its lowest point in 2009. For thousands of households approaching retirement age, this meant working longer after their savings shriveled. "I take a lot of responsibility. We've made mistakes, but also, who knew a recession was coming?" Bill says. "We all make mistakes, honey," Lydia says. While Americans on average are saving close to the recommended 15% of their income for retirement, many in their 80s and 90s grew up before financial education and 401(k)s were prevalent. Not saving enough was a common regret among the over 3,800 older Americans who shared with BI their retirement regrets and what aspects of their lives they would redo if they had the chance. Maura Porcelli, a senior director at the National Council on Aging, says the organization "saw people who thought they had done their due diligence in planning for retirement, the sort who thought their monthly budgets were going to be sufficient, who had all those hopes dashed." "We know that a good number of older adults are susceptible to a major life event that can knock out a major chunk of their savings," she says. According to the Federal Reserve's Survey of Consumer Finances, the bottom fifth of households headed by someone 75 and older had a net worth of about $75,000 in 2022, including equity built up in their homes. For now, the Hindses are bracing for another life-shattering event. "If I lose her, I don't know what I'm going to do," Bill says. "She feels the same way." Working to survive and holding on to each other Some days after work, Lydia sits at her computer and applies for any job she could reasonably do. She tries to appear as sprightly as possible in her applications, sometimes emphasizing how she graduated from the University of Hartford mid-career in 1994. Though she omits her age from her résumé, she suspects that employers have been able to tell, preventing her from landing anything higher-paying than Home Depot. To counter her many rejections, she started building an online business selling funny gift cards, bags, and clothes. She hired a company to design her website, which cost a few hundred dollars. She works with a print-on-demand company to secure merchandise. She hopes it will take off enough that she can work fewer hours at Home Depot. There is little concrete data about the prevalence of potential ageism among workers in their 80s. Companies are prohibited from age discrimination against workers 40 and older per the Age Discrimination in Employment Act. Many of the dozens of workers BI spoke with say they suspected their age hindered their progress at work or hurt their job applications. "Managers are already thinking that 60 is too old, so there's little hope for someone who is much older," says Janine Vanderburg, who founded the anti-ageism nonprofit Changing the Narrative. "Many of the job boards for older workers are focused on lower-paid jobs where there's a demand. If you cannot pay your mortgage, your rent, whatever it is, and you need to work, it's better to do something than nothing." Though programs like the Senior Community Service Employment Program help lower-income Americans 55 and older get job training, the two dozen aging and work researchers and organization executives BI spoke to agreed there should be more resources for older Americans in the workplace. This could include more conversations with workplace leadership about advocating for older workers, more training on technology topics like AI, or local legislation codifying more protections against ageism. Lydia and Bill hope to move out of their apartment before their rent rises again. It's increased by nearly $300 a month since they moved in 2019, but they have nowhere to go. They're waiting for an open cottage at a nearby care facility, which would cost $1,650 for a one-bedroom unit, but they've rethought whether that would be feasible financially. "I want to be in a place where if something happens, we're still together — or at least we can visit each other easily," Lydia says. With all the financial strain, some days, Lydia wants to give up and say, "The hell with it." The couple attributes their longevity to their connection. They say they rarely fight, and when they do, it ends with laughs and comfort. "We're soulmates," Lydia remarks, pointing to Bill. Their relationship is vital because many people in their community, she says, are not well enough to live active lives. Plus, Lydia no longer speaks to her daughter after years of a souring relationship. Bill's relationship with his children is tighter. For his 90th birthday, most of his family flew to Connecticut. They're about to become great-grandparents. It's hard to maintain friends on a budget, Bill says. They've set aside some money to visit a friend on Cape Cod in October, and Bill has plans to see a film with a friend. One of the downsides of aging, he says, is losing friends left and right. Many have died, while others have drifted away. Their Christmas dinner table of 10 a few years ago has dwindled to just three. Amid financial frustrations and loneliness, they find moments of solace. Now and then, they drive the half hour to Hartford in their 2023 Hyundai Elantra for a concert or to the shore with their dog. But often, it's the little moments that distract them from their financial anxiety. For the first time in five years, Bill sits at the piano in their community's clubhouse. He strikes a few chords, cringing as the notes sound slightly too dissonant for his liking. "I have perfect pitch," Bill says. "When I shout, he can tell me what note it is," Lydia whips back. From memory, he plays selections from Claude Debussy's "Clair de Lune" and Frédéric Chopin's "Nocturnes," missing a note here and there to his frustration. Tears stream down Lydia's face as he serenades her with the out-of-tune piano. When he finishes a prelude, she hugs him tightly. It's moments like these that keep her going, she says, holding his hand on the walk back home. Once there, Lydia takes a green binder and places it on her coffee table. In it are 30 pages of notes in preparation for a September trip to New York City for Bill's 91st birthday. A dozen pages are devoted to receipts, directions, and other logistics, like a fancy Italian dinner at Carmine's and a $550-a-night hotel room on Broadway. But given their finances, they've canceled the dinner and are just doing a day trip without a hotel stay. They want to save for Lydia's birthday in August. "I wanted to do something special, but we can't swing it," Lydia says, grabbing a tissue to wipe her eye. "A lot of people don't make it to 91." One page sticks out. It's a receipt for the Broadway musical "Buena Vista Social Club": Two front-row balcony tickets cost her $700. She's paying $50 a month through November via a buy now, pay later app. Bill has long loved the music, and though the tickets were out of their budget, she says it's worth it. For just a day, they will feel wealthy. Nothing, not even the medical bills protruding from her desk, her dwindling paystubs, or a dozenth new medication, would get in the way of that.
2 hours ago
As ADA turns 35, groups fighting for disability rights could see funds slashed
TOPEKA, Kan. -- Nancy Jensen believes she'd still be living in an abusive group home if it wasn't shut down in 2004 with the help of the Disability Rights Center of Kansas, which for decades has received federal money to look out for Americans with disabilities. But the flow of funding under the Trump administration is now in question, disability rights groups nationwide say, dampening their mood as Saturday marks the 35th anniversary of the landmark Americans with Disabilities Act. Federal dollars pay for much of their work, including helping people who seek government-funded services and lawsuits now pushing Iowa and Texas toward better community services. Documents outlining President Donald Trump's budget proposals show they would zero out funds earmarked for three grants to disability rights centers and slash funding for a fourth. Congress' first discussion of them, by the Senate Appropriations Committee, is set for Thursday, but the centers fear losing more than 60% of their federal dollars. The threat of cuts comes as the groups expect more demand for help after Republicans' tax and budget law complicated Medicaid health coverage with a new work-reporting requirement. There's also the sting of the timing: this year is the 50th anniversary of another federal law that created the network of state groups to protect people with disabilities, and Trump's proposals represent the largest potential cuts in that half-century, advocates said. The groups are authorized to make unannounced visits to group homes and interview residents alone. 'You're going to have lots of people with disabilities lost,' said Jensen, now president of Colorado's advisory council for federal funding of efforts to protect people with mental illnesses. She worries people with disabilities will have 'no backstop' for fighting housing discrimination or seeking services at school or accommodations at work. The potential budget savings are a shaving of copper from each federal tax penny. The groups receive not quite $180 million a year — versus $1.8 trillion in discretionary spending. The president's Office of Management and Budget didn't respond to an email seeking a response to the disability rights groups' criticism. But in budget documents, the administration argued its proposals would give states needed flexibility. The U.S. Department of Education said earmarking funds for disability rights centers created an unnecessary administrative burden for states. Trump's top budget adviser, Russell Vought, told senators in a letter that a review of 2025 spending showed too much went to 'niche' groups outside government. 'We also considered, for each program, whether the governmental service provided could be provided better by State or local governments (if provided at all),' Vought wrote. Disability rights advocates doubt that state protection and advocacy groups — known as P&As — would see any dollar not specifically earmarked for them. They sue states, so the advocates don't want states deciding whether their work gets funded. The 1975 federal law setting up P&As declared them independent of the states, and newer laws reinforced that. 'We do need an independent system that can hold them and other wrongdoers accountable,' said Rocky Nichols, the Kansas center's executive director. Nichols' center has helped Matthew Hull for years with getting the state to cover services, and Hull hopes to find a job. He uses a wheelchair; a Medicaid-provided nurse helps him run errands. 'I need to be able to do that so I can keep my strength up,' he said, adding that activity preserves his health. Medicaid applicants often had a difficult time working through its rules even before the tax and budget law's recent changes, said Sean Jackson, Disability Rights Texas' executive director. With fewer dollars, he said, 'As cases are coming into us, we're going to have to take less cases.' The Texas group receives money from a legal aid foundation and other sources, but federal funds still are 68% of its dollars. The Kansas center and Disability Rights Iowa rely entirely on federal funds. 'For the majority it would probably be 85% or higher,' said Marlene Sallo, executive director of the National Disability Rights Network, which represents P&As. The Trump administration's proposals suggest it wants to shut down P&As, said Steven Schwartz, who founded the Center for Public Representation, a Massachusetts-based organization that works with them on lawsuits. Federal funding meant a call in 2009 to Disability Rights Iowa launched an immediate investigation of a program employing men with developmental disabilities in a turkey processing plant. Authorities said they lived in a dangerous, bug-infested bunkhouse and were financially exploited. Without the dollars, executive director Catherine Johnson said, 'That's maybe not something we could have done.' The Kansas center's private interview in 2004 with one of Jensen's fellow residents eventually led to long federal prison sentences for the couple operating the Kaufman House, a home for people with mental illnesses about 25 miles (40 kilometers) north of Wichita. And it wasn't until Disability Rights Iowa filed a federal lawsuit in 2023 that the state agreed to draft a plan to provide community services for children with severe mental and behavioral needs. For 15 years, Schwartz's group and Disability Rights Texas have pursued a federal lawsuit alleging Texas warehouses several thousand people with intellectual and developmental disabilities in nursing homes without adequate services. Texas put at least three men in homes after they'd worked in the Iowa turkey plant. Last month, a federal judge ordered work to start on a plan to end the 'severe and ongoing' problems. Schwartz said Disability Rights Texas did interviews and gathered documents crucial to the case. 'There are no better eyes or ears,' he said.
Hamilton Spectator
6 hours ago
- Hamilton Spectator
As the ADA turns 35, groups fighting for disability rights could see their federal dollars slashed
TOPEKA, Kan. (AP) — Nancy Jensen believes she'd still be living in an abusive group home if it wasn't shut down in 2004 with the help of the Disability Rights Center of Kansas, which for decades has received federal money to look out for Americans with disabilities. But the flow of funding under the Trump administration is now in question, disability rights groups nationwide say, dampening their mood as Saturday marks the 35th anniversary of the landmark Americans with Disabilities Act. Federal dollars pay for much of their work, including helping people who seek government-funded services and lawsuits now pushing Iowa and Texas toward better community services. Documents outlining President Donald Trump's budget proposals show they would zero out funds earmarked for three grants to disability rights centers and slash funding for a fourth. Congress' first discussion of them, by the Senate Appropriations Committee, is set for Thursday, but the centers fear losing more than 60% of their federal dollars. The threat of cuts comes as the groups expect more demand for help after Republicans' tax and budget law complicated Medicaid health coverage with a new work-reporting requirement. There's also the sting of the timing: this year is the 50th anniversary of another federal law that created the network of state groups to protect people with disabilities, and Trump's proposals represent the largest potential cuts in that half-century, advocates said. The groups are authorized to make unannounced visits to group homes and interview residents alone. 'You're going to have lots of people with disabilities lost,' said Jensen, now president of Colorado's advisory council for federal funding of efforts to protect people with mental illnesses. She worries people with disabilities will have 'no backstop' for fighting housing discrimination or seeking services at school or accommodations at work. The potential budget savings are a shaving of copper from each federal tax penny. The groups receive not quite $180 million a year — versus $1.8 trillion in discretionary spending. Trump's administration touts flexibility for sta tes The president's Office of Management and Budget didn't respond to an email seeking a response to the disability rights groups' criticism. But in budget documents, the administration argued its proposals would give states needed flexibility. The U.S. Department of Education said earmarking funds for disability rights centers created an unnecessary administrative burden for states. Trump's top budget adviser, Russell Vought, told senators in a letter that a review of 2025 spending showed too much went to 'niche' groups outside government. 'We also considered, for each program, whether the governmental service provided could be provided better by State or local governments (if provided at all),' Vought wrote. Disability rights advocates doubt that state protection and advocacy groups — known as P&As — would see any dollar not specifically earmarked for them. They sue states, so the advocates don't want states deciding whether their work gets funded. The 1975 federal law setting up P&As declared them independent of the states, and newer laws reinforced that. 'We do need an independent system that can hold them and other wrongdoers accountable,' said Rocky Nichols, the Kansas center's executive director. Helping people with disabilities navigate Medicaid Nichols' center has helped Matthew Hull for years with getting the state to cover services, and Hull hopes to find a job. He uses a wheelchair; a Medicaid-provided nurse helps him run errands. 'I need to be able to do that so I can keep my strength up,' he said, adding that activity preserves his health. Medicaid applicants often had a difficult time working through its rules even before the tax and budget law's recent changes, said Sean Jackson, Disability Rights Texas' executive director. With fewer dollars, he said, 'As cases are coming into us, we're going to have to take less cases.' The Texas group receives money from a legal aid foundation and other sources, but federal funds still are 68% of its dollars. The Kansas center and Disability Rights Iowa rely entirely on federal funds. 'For the majority it would probably be 85% or higher,' said Marlene Sallo, executive director of the National Disability Rights Network, which represents P&As. The Trump administration's proposals suggest it wants to shut down P&As, said Steven Schwartz, who founded the Center for Public Representation, a Massachusetts-based organization that works with them on lawsuits. Investigating allegations of abuse and pushing states Federal funding meant a call in 2009 to Disability Rights Iowa launched an immediate investigation of a program employing men with developmental disabilities in a turkey processing plant. Authorities said they lived in a dangerous, bug-infested bunkhouse and were financially exploited. Without the dollars, executive director Catherine Johnson said, 'That's maybe not something we could have done.' The Kansas center's private interview in 2004 with one of Jensen's fellow residents eventually led to long federal prison sentences for the couple operating the Kaufman House, a home for people with mental illnesses about 25 miles (40 kilometers) north of Wichita. And it wasn't until Disability Rights Iowa filed a federal lawsuit in 2023 that the state agreed to draft a plan to provide community services for children with severe mental and behavioral needs. For 15 years, Schwartz's group and Disability Rights Texas have pursued a federal lawsuit alleging Texas warehouses several thousand people with intellectual and developmental disabilities in nursing homes without adequate services. Texas put at least three men in homes after they'd worked in the Iowa turkey plant. Last month, a federal judge ordered work to start on a plan to end the 'severe and ongoing' problems. Schwartz said Disability Rights Texas did interviews and gathered documents crucial to the case. 'There are no better eyes or ears,' he said. ___ Hunter reported from Atlanta.
