ATLANTA – Nick Papadopoulos clenched the bed at his nursing home, terrified he would roll off without guardrails.
A wispy woman floated in from another room, confused, and crawled into bed with him. Papadopoulos, 38, yelled and hit the call button for help.
“Nobody came,” he said.
It was the start of a yearslong nightmare lived by millions of disabled and elderly Americans who rely on Medicaid: Instead of receiving in-home care to live independently, they are often forced to live in institutions.
It could become more common.
On Aug. 31, the Trump administration moved to make it easier for states to place disabled and elderly people in institutions. To appease a lawsuitfrom several Republican-led states, government lawyers told a federal judge they
were willing to erase a 50-year-old provision requiring federal funds be used to care for people in their homes, whenever possible.
In effect, it undermines a landmarkSupreme Court case from Papadopoulos’ home state that said denying people the ability to live in their communities is discrimination.
Advocates say the government’s concession erodes hard-fought civil rights under the Americans with Disabilities Act. And it threatens the return of a system where disabled people are locked in institutions instead of being allowed to live in their homes.
“It’s simply wrong and inconsistent with 50 years of law,” read a joint statement from seven national organizations, including the American Civil Liberties Union and Disability Rights Education & Defense Fund. “The disability community opposes any effort to turn back the clock on disability rights and community integration.”
Papadopoulos relies on this faltering system that is now endangered.
He lived independently with cerebral palsy using home-based supportsuntil 2016 when he entered the hospital with a common wound. Papadopoulos thought he would go home after a short nursing home stay.
Instead, he was put at the end of Georgia’s list of 6,000 people waiting for disability services. He lost his job, his house and, eventually, his independence.
After 10 years, he remained locked away in Room 130 at Brown Health & Rehabilitation, more than 30 miles from his Athens home.
Supreme Court: A right to live at home
Lois Curtis proved that Americans with disabilities have the right to live at home – and federal law protected them from an empty promise.
Curtis, like many others with intellectual and developmental disabilities, had spent most of her life locked away. The 25-year-old sought care one day at Georgia Regional Hospital in 1992, but was still there years later, against her will.
From a payphone, she kept calling Atlanta Legal Aid to ask: “When am I getting out of here?”
It had been two years since the Americans with Disabilities Act established civil rights protections against discrimination. The “integration mandate” says people with disabilities have a right to learn, live and work in the community alongside their neighbors.
At the time, more than 2.5 million people lived in institutions, such as psychiatric hospitals, nursing homes and other large residential facilities, according to federal statistics. Many entered voluntarily but didn’t have anywhere else to go after treatment. So they were kept there.
“They had choice in theory. Except they didn’t have it in practice,” said Susan Walker Goico, a senior attorney at Atlanta Legal Aid Society's Health and Disability Rights Unit.
Doctors said Curtis could live safely on her own with a 24-hour personal aid. She tended to wander from home and needed help managing medications and money. For years, the state had not provided Medicaid services for her to live at home.
Sue Jamieson, the attorney who met Curtis when she was first sent away at age 11, filed a lawsuit on her behalf against the state of Georgia in 1995. Elaine Wilson, who the hospital had tried to discharge to a homeless shelter, soon joined as a second plaintiff in the case, Olmstead v. L.C. and E.W.
Georgia denied discriminating against the women. The state claimed it simply did not have enough money to provide community-based care. Federal Medicaid rules did not – and still don’t– require them to offer it for adults.
The Supreme Court ruled in 1999 that the state could not institutionalize people simply because it did not want to pay for care at home or in the community. Federal research would later show that home-based services are, on average, a third the costof institutional settings.
“Persons without mental disabilities can receive the medical services they need without similar sacrifice” of their personal liberties, Justice Ruth Bader Ginsberg wrote for the majority. She added that confining people with disabilities “perpetuates unwarranted assumptions” that they are "incapable or unworthy of participating in community life."
Curtis left the hospital at last.
She lived with roommates in group homes and, finally, in her own apartment with support from a round-the-clock aid. When major decisions arose, like choosing a doctor, an expert board from a supported living program guided her.
“Lois had so much love for other people,” said Linda Pogue, who met her friend through a community art class. “She was just sharing it all out, in her way. The fun, the laughter, the art. The sharing of a cigarette.”
Curtis often sat at a picnic table on the wooded shore of Pine Lake, watching ducks and drinking Coke while painting. Her art featured continuous line drawing, a technique popularized by Pablo Picasso.
Curtis spoke at disability rights conferences and statehouses. She appeared in art shows and sold her work.
In 2011, President Barack Obama invited her to the Oval Office. She gave him a hug, a smile and a painting.
Curtis lived as she chose until her death from cancer in 2022. Thousands watched a livestream of her funeral.
A common injury lands him in financial trouble
Because of Curtis anddisability rightsactivists like her, the nation’s laws promised Papadopoulos similar access to a public education and the American Dream.
Born with cerebral palsy, he had the same energy, interests and, for a while, opportunities as other Astoria boys who explored New York City without crutches or canes. His overprotective Greek mother often kept him at home after school, so Papadopoulos delved into pop culture. He’d feed tapes into the VHS player, plop on the floor, and watch “Predator” or “Dragonslayer” on repeat.
After graduating, Papadopoulos took classes at Hunter College, bonding with classmates over sword and sorcery movies. He asked a girl out, and she said yes. He drank and partied – a little too much – like a regular college kid. He left college to manage real estate with his dad.
With settlement money from the medical malpractice case stemming from his delivery as a baby, the family had bought investment properties they rented out. He earned enough to cover his medical expenses without insurance.
“I became a slum lord,” Papadopoulos quipped.
But then he went to the hospital with a severe skin infection, a common but serious condition for people who stay in one position for long periods. Untreated, it can lead to blood poisoning or muscle and bone damage.
The cost for treatment threatened to ruin him. A Harvard analysis found that hospitals routinely bill more than $40,000 to treat his condition.
Papadopoulos had two choices.
He could sell everything he owned to pay for his care. When he was broke enough, he could apply for Medicaid. Or, he could transfer his properties to his mother and be poor enough to qualify for government health coverage immediately. That’s what he did.
“It sucks. And it’s systematic,” Papadopoulos said. “No matter how much you try to improve your situation, they bottleneck you and make sure that you remain poor.”
To maintain the services that let him stay independent, including Medicaid and monthly Social Security Insurance payments, his assets can't exceed $2,000. He can’t earn more than $1,690 a month before taxes.
It was a preview of the government bureaucracy that would shape his life.
Lost his job, his home, his independence
Papadopoulos moved to Athens, Georgia, in 2009 for warmer weather and new adventures.
At a drab Christmas party for the local Center for Independent Living, Papadopoulos caught the attention of the nonprofit’s leader when he chatted up everyone in the room, trying to “liven it up.” He offered Papadopoulos a job.
For two years, he worked as a peer support specialist, learning about the services that let disabled people live and work in their communities. He realized, “Oh, I qualify for this, too.”
After Curtis’ landmark victory at the Supreme Court, states like Georgia started using more federal Medicaid funds to provide services to adults in their homes. But Congress never changed the rules to require it. And states can arbitrarily cap how many people, like Papadopoulos, they support living in the community.
Around the same time – and a short drive from where Curtis enjoyed her freedom – Papadopoulos lived independently thanks to those Medicaid services. It paid a personal aid to help him four hours a day with basic tasks, mostly bathing and getting dressed.
He started using a power chair as he lost mobility, and he gained weight. Then, in 2016, he developed a pressure wound, a condition serious enough that it could cut to muscle or bone.
This time, there would be no returning home. On paper, he had the right to live where he wanted, but he fell into a services gap just as Curtis had decades earlier.
A long hospital stay led Papadopoulos to lose his job and his home. He lost his Medicaid support services and monthly Social Security payments. To get his home care back, he'd have to go on Georgia’s waitlist – along with thousands of others.
“I was just angry,” he recalled.
Today, a national survey shows more than 606,000 people wait for Medicaid home services. In at least seven states, people can wait more than a decade.
And the wait could get longer.
State leaders targeted these voluntary programs after Congress’ historic Medicaid cuts as part of the One Big Beautiful Bill. Several states have already cut budgets for home care and how much theypay providers.
This year in Georgia, legislators approved adding 900 slots for home services to chip away at the 8,000 people on its waitlist, like Papadopoulos. But Gov. Brian Kemp vetoed that expansion.
Papadopoulos called the decision “terrible.”
“People's dreams won't happen,” he said.
'I'm going to die'
Papadopoulos understands. His own life was effectively paused at age 38.
When he lost his home services, Papadopoulos could choose to live on the streets or in a nursing home – it wasn’t a real choice.
He struggled going from a “grown-ass man” who chose his own bedtime to being the patient in Room 130.
Papadopoulos could not leave, not even for a day trip. Just to get out of bed, facility rules said he needed a medical lift and two aids. He had to wait until they were done with more than 20 other patients. Papadopoulos spent so much time in bed, he lost muscle mass and developed osteoporosis.
Sometimes, he sat in a soiled diaper for hours before help arrived.
“They did their best,” he said, acknowledging nurses and aids had tocare for too many people.
While in the nursing home, Papadopoulos missed his mother’s funeral. He missed his dad’s funeral. He missed a cousin’s wedding and the birth of his nephew. Concerts and dinners and movies with friends were a thing of the past.
He was exposed to diseases he never would have been at home. In just his first year, a bacterial infection gave him nonstop diarrhea, belly cramps and a fever. Andscabies mites burrowed into his skin, making painful and itchy tender spots he could not reach.
“It's scary because I'd never experienced going through this,” he said. He remembers thinking, “I'm going to die. This is the end.”
Regardless of what Curtis’ Supreme Court case said about his rights, he could not get out.
While he tried to “hold on to my humanity,” several states fought to rescind the rules requiring them to use federal dollars to keep people with disabilities in their own homes whenever possible. Several Republican-led states, including Georgia, filed that lawsuitin 2024.
In June, the Department of Justice announced it would no longer enforcethose federal guidelines. On Aug. 13, justice officials asked a federal judge to vacate a related decisionthat protected Florida kids from being put into institutions for care.
And on Aug. 31, federal lawyers sided with the suing states, offering to erase the integration mandate from federal health regulations as part of a settlement. They said it’s not discrimination to treat someone in an institution if there are “legitimate” reasons for states to prefer it over caring for them in their homes.
Florida joined the lawsuit “to serve as a check on federal power, not to deny care," said James Williams, spokesman for Florida Attorney General James Uthmeier. "Reclaiming state authority gives Florida the flexibility needed to address critical public safety and homelessness issues while ensuring proper care for individuals."
Papadopoulos was outraged that the federal agency charged with protecting his rights has instead undermined them.
“The Department of Justice has become the very same bad actor they were charged to defend against,” he said.
'I'm going to fight'
In July 2026 – 10 years after he went in to recover from a common injury – Papadopoulos moved out of Room 130. He’d finally found a home services provider to take on his medically complex case.
“Even in horror movies, what doesn’t kill you makes you stronger,” he said of his time in a nursing home. “It didn’t kill me. Would I wish it on my worst enemy? No. But that experience forged me and prepared me for what comes ahead.”
On his first day of freedom, Papadopoulos went to the movies and saw “Backrooms.” He visited the state botanical gardens in Athens, where a patch of edible plants inspired him.
“That’s what I want at my house,” he thought. “My own herb garden with peppers and basil and all that.”
He looked forward to cooking again with his support staff, eating the Greek food of his childhood instead of the fried cafeteria meal of the day.
Papadopoulos now eats what he wants, when he wants.
He can make “bad choices” like drinking a diet soda with dinner or staying up late watching Netflix. He can roll through his wooded neighborhood at any hour. He can call 911 without permission from a charge nurse.
“When you're in a nursing home, your identity is stripped from you. You're no longer a person like you were. You're a patient,” he said.
Support workers and nurses often become “like family,” Papadopolous said.
They prepare meals together. Talk about movies. Go fishing. Play Uno. Commiserate about the long waits at doctors’ offices. Bicker about whether to go out or stay home.
Still, life with home services comes with challenges. Staff quit without notice – presumably for better pay or shorter shifts at nursing homes and hospitals. He rarely hears from them once they leave.
“You think you’re building these relationships,” Papadopoulos said. “But they disappear.”
After 10 years of isolation and dictated routine, he must rediscover himself and build a new place in the community. He plans a trip to the theater to watch the new Spider-Man movie. He considers a suggestion to attend Atlanta Dragon Con.
In between, he joins the advisory committees of disability organizations and testifies at government hearings, most virtually. Papadopoulos is prepared to defend his civil rights and the Medicaid services that fulfill those promises.
“I'm going to fight ’til the very end to help other people, free other people from nursing homes,” he said.
That July night, Papadopoulos bantered with two support people as they used a lift to swing him from a power chair to his bed. They washed his body with hand towels and said goodnight.
Secure between guardrails, Papadopoulos fell asleep, at last, in his own home.
Jayme Fraser is an investigative data reporter at USA TODAY. She can be reached by text or on Signal at (541) 362-1393 or by emailing jfraser@usatodayco.com.
This article originally appeared on USA TODAY: He lost 10 years in a Georgia nursing home. Fed rules make it common
