When Rob Stone finished high school in Bethesda, Maryland, in 2018, he was asked to identify three goals for his life. Stone loves art and baseball. He’s cheerful, sports a cheeky mustache, and he’s always up for an adventure.

Stone has a rare genetic movement disorder, dystonia-parkinsonism, that limits his mobility and speech. Setting specific goals would help him construct the life he wanted, and help his family identify the services he would need to live it to the fullest.

His parents suggested goals like “going on lots of walks” or “visiting state parks.” Stone just looked at them like they were ridiculous, said his mom, Jeneva Stone.

“We eventually discovered, through the right series of questions, that Robert wanted to protest,” she said. He’d watched disabled protesters dragged out of their wheelchairs from then-Senate Majority Leader Mitch McConnell’s office at the U.S. Capitol the year before, as they demanded the preservation of the Affordable Care Act.

Now 29, Rob has been a fixture on Capitol Hill and at the Maryland State House ever since, advocating alongside his parents for disability rights and healthcare. Earlier this year, he joined with other advocates to lobby the state legislature not to cut funding for services that help him and others live in their communities.

They weren’t able to prevent the cuts, but they did succeed in limiting them.

Disability advocates around the country are fighting a surge of federal and state actions that have eroded protections meant to keep people with disabilities living and working in their communities, rather than in institutions.

The federal government has walked away from decades-old requirements that states deliver disability services to people where they live. At the same time, state leaders, citing budget shortfalls, have rolled back community services the feds don’t require them to fund.

“It’s really hard,” said Rob Gorski, an Ohio father of three sons with autism who runs a popular social media account called TheAutismDad. “You try to wrap your head around one thing, and by the time you even figure out a path forward from there, they’ve thrown more stuff at you.”

In Maryland, state lawmakers were weighing cuts to Medicaid, the joint federal-state program that covers much of Rob’s care, which he receives at home. The federal government will be reducing its share of Medicaid funding as part of the One Big Beautiful Bill Act, the broad tax and spending measure President Donald Trump signed last summer.

Maryland ended up cutting $126 million from the agency that administers Medicaid for people with developmental disabilities — but that was less than the $150 million reduction that Democratic Gov. Wes Moore originally proposed. The final budget also scrapped a proposed cap on how much state funding a person in the program could receive per year.

“Medicaid itself isn’t just a budget line item,” Jeneva said. “It’s the mechanism through which the federal government ensures that people with disabilities have the civil right to live in their communities.”

Other threats to community-based disability services have emerged in Washington, D.C., and across the nation.

In June, the U.S. Department of Justice issued an opinion memo that says states don’t have to fund in-home or community-based services for people with disabilities who don’t want to live in institutions. The memo is a significant reinterpretation of federal law and represents a shift away from decades of civil rights protection.

The memo doesn’t change federal law, but it does signal a new focus for the DOJ, which is the primary enforcer of disability rights. Without enforcement, advocates worry, the civil rights protections they rely on could become moot.

In July, the DOJ published another notice saying it would no longer enforce its longstanding guidance on how to implement a landmark U.S. Supreme Court decision, Olmstead v. L.C., that requires public entities to provide community-based services, rather than institutional care, to people with disabilities whenever possible.

The federal spending reductions in the One Big Beautiful Bill Act are likely to spur more cash-strapped states to cut home- and community-based services, since the federal Medicaid law only requires them to provide institutional care. More than half a dozen states have already moved to limit such services for people with disabilities, according to an analysis of state actions by researchers at George Washington University.

And at least three states are suing to dismantle a section of disability law that requires states to provide community-based services.

Defenders of the changes say they will allow states to refocus their limited dollars on people with the most serious medical needs.

New Medicaid work requirements in the Trump law, which are expected to drop between 3 million and 7 million people from the rolls, “will free up more state funding for (home- and community-based services) recipients,” said Rachel Barkley, director of the Able Americans disability policy think tank, which is housed inside the conservative National Center for Public Policy Research.

But Jeneva Stone says the cuts in Maryland threaten her son’s ability to get the nursing and other services he needs to be able to live at home. She worries families like hers will be the first to face forced institutionalization.

“More and more burden falls on family caregivers to fill in the gaps, and that leads to unsustainable economic situations for families,” she said. “Once your job situation falls apart, your savings are gone, you’re faced with this ugly choice: I believe strongly in my son’s civil right to stay in his community, but I can’t keep a roof over his head.”

Everything feels uncertain, she said, as longstanding protections seem to be dissolving for her son and others like him.

“They’re happy, they’re living great lives,” she said. “Are they medically complicated? Yeah. But do they deserve to spend the rest of their lives lying in a bed in a facility just because it’s easier to care for them in a congregate setting?”

‘That’s what people want’

In the middle of the 20^th century, disabled activists and their family members demanded an end to systemic abuses suffered by many of the hundreds of thousands of disabled people who were hidden away in sprawling state institutions around the country.

In the following decades, presidents and lawmakers of both parties championed a national shift away from segregating disabled people in huge facilities and toward the provision of services — such as home health nurses, physical therapy or adaptive tools — that would enable them to live at home or in their communities.

The two most consequential landmark federal disability rights laws were signed by Republican presidents: Richard Nixon signed the Rehabilitation Act in 1973, and George H.W. Bush signed the Americans with Disabilities Act in 1990. Then, in its 1999 Olmstead ruling, the U.S. Supreme Court ruled that the unjustified institutionalization of people with disabilities was a form of discrimination.

“For decades we have very intentionally been shifting resources away from institutional care and into the community, because that’s what people want, and it’s more cost effective,” said Alison Barkoff, a health law and policy professor and director of the Hirsh Health Law & Policy Program at George Washington University.

“We can serve, generally, three people in the community for every one person in an institution. And it leads to better outcomes.”

More than 8 million Medicaid users receive such home- and community-based services across the country, while 1.5 million get services in institutions, such as nursing homes. Federal law requires state Medicaid programs to provide medical care and other support for people with disabilities.

People who live in institutions cost Medicaid an average of $54,462 per year, compared with $17,298 for people who get home and community services, according to the most recent Medicaid data.

State investments in home- and community-based services often result in short-term spending increases, but over time lead to long-term cost savings and a reduction in institutional spending, according to research from Brandeis University’s Community Living Policy Center.

The national shift to community-based services has been overwhelmingly popular. About 82% of people who receive community-based services prefer to live at home rather than in an institution, according to the most recent survey by the Medicaid and CHIP Payment and Access Commission.

That’s why, said Barkoff, “it is incredibly shocking, the approach that this administration is taking to something that has been so bipartisan and so much a part of American culture for decades.”

Some Republican-led states now want courts to adopt the Trump administration’s new interpretation of the Olmstead decision. Texas has already used the June DOJ memo in its lawsuit challenging federal requirements to provide community-based services. Florida also has used the memo as part of its appeal of a case involving medically complex children who were forced into nursing homes because the state refused to pay for in-home services.

Conservative state leaders say the federal government shouldn’t dictate how states offer support for people with disabilities, and argue that nursing shortages and other issues make it too difficult for states to care for some people outside of institutions.

Left behind

Barkley of Able Americans supports the shift away from institutionalization, but she says there should be more public investment in group homes or smaller facilities that can provide 24/7 oversight for people with more complex needs who can’t live safely at home.

“Unfortunately, it’s only when somebody with a serious mental illness hits the criminal justice system that they’re able to receive care,” she said. “And so for this sliver of the serious mental illness population, this movement has left them behind.”

VOR, a national disability rights nonprofit that supports “a full continuum of care options” for people with disabilities, argues that overly aggressive enforcement of the Olmstead decision and related federal law has, in some cases, resulted in people with disabilities being moved into community settings without adequate support. That broad-strokes application has contributed to poor outcomes, including homelessness, for some people.

The DOJ memo and other federal actions reducing community care have been driven in part by the Trump administration’s push to address homelessness, said Barkoff. Trump issued an executive order last July giving states a green light to commit people experiencing homelessness to treatment centers or hospitals, whether they want to go or not.

“They have created this narrative that Olmstead created this problem” of not enough beds for people who need higher levels of care, said Barkoff. But without Olmstead, “there was just a hollow promise to close institutions,” she said.

“What Olmstead did was create a tool to require states to follow through on that commitment.”

Gorski said it’s been more apparent this year than ever that there are people and families, particularly those with complex care needs, who feel that the shift away from institutional care hasn’t helped them.

Recent efforts by the Trump administration to roll back protections are “exploiting where we’ve failed to ensure that we’re taking care of our own people,” he said. “Everyone in this community should feel seen and heard and like they have a place at the table.”

But even VOR warned in a June statement that the DOJ memo “substantially weakens” protections and federal pressure on states to fund the community-based services many people with intellectual or developmental disabilities depend on.

States on their own

In June, Republican lawmakers in Ohio swiftly backtracked on a proposal that would have barred Medicaid recipients’ family members from being paid as caregivers. They pulled the controversial portion of the bill after backlash from residents who said it would hurt people with developmental disabilities whose caregivers are often relatives whose caregiving duties prevent them from taking other jobs.

Some states have recently expanded home and community-based services, including Georgia, Illinois, Ohio and Wyoming, according to George Washington University’s analysis. Others, including California, Idaho, Indiana, Maryland, Minnesota and Nebraska, have limited services.

Some, like Kansas and Virginia, have done both.

Ultimately, as the feds back away from enforcing civil rights protections, states are left to figure out how to offer services for people with disabilities in a way that balances civil rights with budget realities.

“At this point it’s kind of a state-by-state effort,” said Illinois state Sen. Julie Morrison, a Democrat who sponsored a bill this year, now law, that turned Illinois’s state disability commission into a cabinet-level agency.

“But at the end of the day we are obligated, morally I believe, to make sure we are taking care of people who need these services and who want to live in an independent environment.”

Rob Stone and his parents plan to continue meeting with state legislators in Maryland to push back against deeper cuts to services that help him remain with his family. His mother said she’s been doing a lot of explaining to lawmakers about how civil rights for people with disabilities fit into existing law.

“There’s a tremendous need for advocates to educate legislators at the state level about this because they’ve never had to think about these things before,” she said.

“It’s always been something the federal government takes care of.”

Stateline reporter Anna Claire Vollers can be reached at avollers@stateline.org.

The Trump administration announced Tuesday that it is freezing more than $1 billion in Medicaid payments to California and Minnesota in an effort to crack down on fraud.

Medicaid is the public health insurance for people with low incomes, including some disabled and elderly people, jointly funded by state and federal dollars.

The U.S. Department of Health and Human Services and the Centers for Medicare & Medicaid Services deferred more than $867 million to California and $199 million to Minnesota. The feds say they need more documentation from those states to support some Medicaid claims for services that are at high risk for fraud.

The freeze marks the latest round of withheld payments as the Trump administration continues its crackdown on suspected fraud in publicly-funded social service programs, mostly focusing on Democratic-led states. Earlier this year, the Trump administration launched a fraud task force to look into potential waste or abuse in publicly-funded benefits programs, explicitly naming states such as California, Colorado, Illinois, Maine, Minnesota and New York.

The Trump administration has already deferred Medicaid payments in Minnesota twice this year, totaling nearly $400 million. The deferral process, under which the federal government can withhold funding when questioning claims already billed to Medicaid, had never been used to deny funding for entire service areas until a $243 million deferral in February, the Minnesota Attorney General noted.

A letter delivered Tuesday from CMS to the Minnesota Department of Human Services stated that $195 million of the deferred $199 million comes from specific providers that CMS identified as high-risk for fraud or “aberrant billing practices” based on historical billing and analysis. The money comes from services delivered from January through March and has already been paid. States will have to provide documentation backing up the claims or be forced to reduce future billing to the federal government.

The Trump administration has also threatened to withhold $2 billion in annual Medicaid funding to Minnesota in a separate process. The funding fight in Minnesota centers on 14 Medicaid services deemed high-risk to fraud and are largely designed to give long-term care for elderly and disabled people. But state officials have said that funding freezes could deliver a serious blow to the state’s Medicaid program more generally, which cost $18 billion in 2024 and covers other low-income Minnesotans.

John Connolly, temporary commissioner and state Medicaid director for the Minnesota Department of Human Services, said in a statement that Tuesday’s deferral reflects the federal government’s “unprecedented and punitive ways as part of their war on Medicaid and its recipients.”

“CMS touts their new fraud-detection capabilities, yet has not provided data or explanation on how the deferral amount was calculated or what it was based on. I respectfully ask the federal government to partner with us and share any information about their methods to identify potentially fraudulent providers in Minnesota,” Connolly said.

The federal-state fight over Medicaid funding has affected thousands of Medicaid providers in Minnesota, who were abruptly cut off from funding as the state raced to reach a federal deadline to screen all providers in the “high-risk” services. Providers and their advocates said the process was rushed and left legitimate providers unable to get paid for delivering services to vulnerable Minnesotans.

HHS Secretary Robert F. Kennedy Jr. said the Trump administration’s goal is to strengthen the integrity of the Medicaid program and make sure federal funds are spent appropriately.

“States that receive federal Medicaid funding must demonstrate that every dollar meets federal requirements,” Kennedy said in a news release on the deferred funds. “When they cannot, we will not release federal funds until they do.”

California Gov. Gavin Newsom, a Democrat, called the withheld funds a “recycled political stunt” in a post on X, and said his state was being targeted for political reasons.

Minnesota Democratic Gov. Tim Walz rejected the Trump administration’s framing of the situation in a post on X: “This isn’t about fraud — it’s about cutting your healthcare so that Trump can afford the tax cuts he gave to billionaires.”

CMS said it identified unusually high growth in spending on certain in-home care programs in California, triggering the hold on that state’s funds. It has not provided proof of fraud.

Newsom countered in his X post, arguing that California is saving taxpayer money “by keeping seniors and people with disabilities out of far more expensive nursing homes.”

In Minnesota, a CMS review flagged expenditures that raised “potential eligibility or billing concerns.”

“CMS is done trying to chase down stolen and misused funds after they’ve already left the building,” Dr. Mehmet Oz, CMS administrator, said in a news release, adding that the deferred payments are part of a “proactive new approach to program integrity.”

The pauses in funding don’t affect who is eligible for Medicaid, and they’re not permanent cuts.

Alyssa Chen of the Minnesota Reformer contributed to this story. Stateline reporter Anna Claire Vollers can be reached at avollers@stateline.org.

As state and federal officials work to identify the source of the recent outbreak of the intestinal illness cyclosporiasis, Michigan health officials have identified lettuces or salad greens as one potential culprit.

“Early information has shown lettuce as a common product that regularly comes up during the investigation,” said Dr. Natasha Bagdasarian, chief medical executive at the Michigan Department of Health and Human Services, in a news release. “We will continue to provide updates as we learn more.”

Officials cautioned they haven’t ruled out other food items as the source. The U.S. Centers for Disease Control and Prevention (CDC) has confirmed 1,645 cases in 34 states, but that is a significant undercount based on the numbers being reported by state health officials.

Cyclosporiasis is caused by the parasite cyclospora. Symptoms include watery or “explosive” diarrhea, nausea and stomach cramps. It’s often contracted by eating or drinking something contaminated with the parasite, which lives in feces.

Michigan first reported an outbreak of cyclosporiasis on July 1 after nearly 200 cases were reported across seven counties. The state now leads the nation in cases, with the state health department reporting 2,640 cases Monday and 44 hospitalizations. The case numbers jumped 69% from Friday.

New York, Ohio, Illinois, Indiana and Kentucky also have reported a higher than usual number of cases. New York City alone has seen 403 cases this year, most of them since May 1. The New York City Health Department said in a statement to Stateline that it’s working with partners to determine a common source.

Ohio health officials reported 177 cases as of July 2, with 28 hospitalizations.

“Fortunately there have been no deaths in Ohio, as is consistent with our past experiences with this illness,” said Dr. Bruce Vanderhoff, director of the Ohio Department of Health, in a statement.

“Nevertheless, this is a serious illness that can cause dehydration and require people to seek emergency medical care, and it should be taken seriously.”

The CDC expects case numbers to continue rising, given a typical six-week lag between the onset of illnesses and when cases are typically reported to the CDC. The New York Times reported it has independently confirmed at least 4,800 cases this year.

States such as  Michigan are rushing to do their own sleuthing after cutbacks have reduced surveillance capabilities at the federal level. Last year, the CDC scaled back its surveillance program that monitors foodborne illnesses. It no longer requires monitoring for six pathogens, including cyclospora, only requiring reporting for two: salmonella and Shiga toxin-producing E.coli.

The CDC acknowledged that while it’s working to collect and analyze data at the national level, “State health departments may have more timely information about the situation in their jurisdictions.”

The Trump administration said on social media on Monday that the CDC is working with 3,000 health departments to gather data, and that the U.S. Food and Drug Administration is investigating the outbreak alongside the CDC and state and local partners.

Local health departments in Michigan have conducted more than 1,000 interviews of those who’ve tested positive for cyclosporiasis, to try to trace the source of the outbreak, state officials said.

But in many states, the risk to the public remains low.

It’s  not uncommon for states to see at least a few cases of cyclosporiasis each year. Michigan typically identifies 40-50 each year, while Rhode Island documented six cases last year and 12 in 2024. Because it can take up to two weeks for symptoms to develop after a person is exposed to the parasite, state officials say it takes time to investigate the source.

There’s currently no evidence that links recreational water exposure, such as swimming in lakes, as a risk factor for the illness. And in none of the cases confirmed by the CDC did the affected person report any travel during the two weeks prior to falling ill.

In previous cyclosporiasis outbreaks, bagged salad mixes and kits were identified as the culprit, along with fresh cilantro, basil, raspberries, snow peas and green onions. One of the largest outbreaks of cyclosporiasis was in 2020, which resulted in 701 people falling ill in 14 states, and which the CDC linked to Fresh Express bagged salads.

The CDC has identified cases in the current outbreak in the following states: Alaska, Arkansas, California, Colorado, Connecticut, Florida, Georgia, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Maryland, Massachusetts, Michigan, Minnesota, Nebraska, New Hampshire, New Jersey, New York, North Carolina, Ohio, Pennsylvania, Rhode Island, Tennessee, Texas, Utah, Virginia, West Virginia and Wisconsin.

This story was updated to reflect new numbers from the Centers for Disease Control and Prevention. Janine Weisman of the Rhode Island Current, Kyle Davidson of the Ohio Capital Journal and Jon King of the Michigan Advance contributed to this report. Stateline reporter Anna Claire Vollers can be reached at avollers@stateline.org.

Fifteen states on Friday sued the Trump administration to prevent millions of dollars in cuts to school-based mental health funding.

The new lawsuit is part of an ongoing legal battle between Democratic-led states and the U.S. Department of Education over a mental health grant program that Congress established following the 2018 school shooting at Marjory Stoneman Douglas High School in Parkland, Florida.

At stake is a $1 billion program that offers grants to school districts across the country to help them hire and train more mental health professionals to work in schools.

Democratic attorneys general in 15 states say the Trump administration, in defiance of a December 2025 court order, plans to unlawfully terminate the grants at the end of this month, resulting in millions in lost funding.

“Our children deal with a unique set of problems which arise from growing up in 2026 — from loneliness to substance use disorder to the ever-present fear of violence — and the programs funded through these grants are designed to help them cope and hopefully thrive,” said Rhode Island Attorney General Peter F. Neronha, a Democrat, in a statement announcing the lawsuit.

In 2022, after a school shooting in Uvalde, Texas, claimed the lives of 19 students and two teachers, Congress allocated $1 billion to the Mental Health Service Professional Demonstration Grant Program to increase the number of school-based mental health professionals.

That funding effort was bipartisan; at the time Republican U.S. senators including John Cornyn of Texas, Susan Collins of Maine and Thom Tillis of North Carolina publicly supported it. And within a year, the grants had funded mental and behavioral health services to nearly 775,000 students nationwide.

But in April 2025, under President Donald Trump, the U.S. Department of Education told grantees the funding would be halted because their programs conflicted with Trump administration priorities. At that time, the grants were supporting efforts in 49 states to prepare thousands of mental health professionals to work in K-12 schools.

Trump administration officials told the media that the grants were cut over what the administration saw as connections to diversity, equity and inclusion initiatives.

A coalition of 17 Democratic state attorneys general sued last July, and a court ruled in their favor, ordering the Trump administration to stop the grant discontinuation. In the months since the order, the education department has threatened to withhold funding or terminate the grants altogether.

The Democratic attorneys general said they filed the new lawsuit to cover gaps in the previous court order that could allow the Trump administration to follow through on its desire to halt the funding.

“The courts have repeatedly ruled that the Trump Administration does not have the power to arbitrarily revoke grant funding that provides critical mental health services to our students,” said Massachusetts Attorney General Andrea Joy Campbell, a Democrat, in a statement about joining the lawsuit.

“Still, the federal government continues its attempts to terminate funding.”

Stateline reached out to the U.S. Department of Education for comment but did not receive a response before publication.

Attorneys general participating in the lawsuit are from California, Colorado, Connecticut, Delaware, Illinois, Maine, Maryland, Massachusetts, Michigan, New Mexico, New York, Oregon, Rhode Island, Washington and Wisconsin.

Stateline reporter Anna Claire Vollers can be reached at avollers@stateline.org