From her hospital bed, Alexis Ratcliff asks a question: "What 18-year-old gets sued?"
Ratcliff is that 18-year-old, sued by the hospital in Winston-Salem, N.C., that wants her to leave.
Ratcliff, a quadriplegic who uses a ventilator, has lived at Atrium Health Wake Forest Baptist since she was 13. She wants to leave, too. But not to the nursing home the hospital found for her in another state.
She wants to live in a home nearby, close to her family and school.
When she refused to move to the distant nursing home, the hospital sued her for trespass.
The standoff in North Carolina shows the failure of states across the country to adequately address the long-term-care needs of younger people with complex disabilities. This year marks the 25th anniversary of a U.S. Supreme Court opinion that found states have an obligation to help people with disabilities — young and old — live, whenever possible, in their own homes and not in institutions like hospitals and nursing homes.
A 2010 NPR investigation found that states and the federal government failed to live up to the new requirement to help people live at home. Ratcliff's case, and new analysis by NPR, shows that progress in the states remains spotty, especially for people with the most complex disabilities.
In her hospital room decorated with cards, posters and Disney memorabilia, Ratcliff speaks softly under the persistent whoosh of the ventilator, a machine that pushes oxygen into her lungs. "I didn't ask to be here," Ratcliff says. "It wasn't my choice. It wasn't my decision. I didn't want to be here. But unfortunately, I'm the one who got sued."
She wants the state of North Carolina, where she has lived her entire life, to find a house or apartment for her, with aides and nurses. It's something the state has done for other people with disabilities similar to hers.
"Yes, I am a quad," she says. "But I'm still a normal human being, just like everyone else. And I should be able to live ... life to the fullest of my abilities."
Ratcliff says to do that, she needs to stay near her family and the neighboring college that gave her a full academic scholarship. She recently began online classes, but dreams of attending on campus one day.
In February 2008, when Ratcliff was 18 months old, she was injured — her neck crushed — in a car crash. Her mother was driving and her father was holding her in his lap in the front seat. Ratcliff's mother was high on drugs and was later convicted of multiple charges related to the accident and sentenced to prison.
Doctors at Wake Forest Baptist saved Ratcliff's life.
She was sent home to live with family. North Carolina's Medicaid agency sent nurses and aides to the house to help care for the young child, who needed a ventilator to breathe and a wheelchair to get around.
That arrangement ended when her grandfather developed serious health problems and gave up his house to move to an assisted living facility. In January 2019, when Ratcliff was 13, she returned to the hospital. Except for one six-month period when she stayed with a foster parent, she's lived there ever since.
Dr. Kevin High, the hospital's vice chief academic officer, says this isn't about money. Medicaid pays for Ratcliff's care.
High says a hospital isn't a place for people to live long term. Except for a short time after Ratcliff returned from her brief foster care placement, her health has been stable, according to the hospital's lawsuit, and she doesn't require the level of care she's getting in the hospital.
"We always have people waiting for beds. And especially ICU beds," says High, who until September served as the hospital's president. Some people get turned away or wait for prolonged periods, he says, "when you have people who stay in the hospital for a very long period of time like this."
Ratcliff says she still needs the bed — until care can be set up in a home or apartment.
Since Ratcliff came back to the hospital in 2019, the level of care has been attentive and skillful. She's had no bed sores, no respiratory infections. Those can be common — and deadly — for a quadriplegic on a ventilator.
The nurses, doctors and staff have been some of Ratcliff's biggest supporters, and her best friends.
Last spring, when Ratcliff graduated from high school, staff on the pediatric side, Brenner Children's Hospital, threw a big party. In August, when she turned 18, they threw her an even-bigger birthday celebration.
The next day, officials at the health center ordered her moved to the adult side of the hospital and increased the pressure on her to leave. With no nursing home in North Carolina willing to take her, the hospital found a nursing home a few hours away in Virginia.
High notes that Ratcliff initially said OK. But Ratcliff, who became her own guardian when she turned 18, says she felt pressured by hospital staff who said if she didn't go to the nursing home in Virginia she'd be sent instead to one even farther away, possibly in Ohio. Ratcliff and her lawyers say she was pressed to make a decision without family or another representative present.
Ratcliff's lawyers claim the hospital retaliated against the young woman. It removed the respiration equipment she needs to go outside the hospital and ended a contract with a nurse who occasionally took her out, the lawyers allege.
They claim Ratcliff has been warned that if she goes outside the hospital, she won't be allowed back in. She hasn't been outside since August.
The hospital had tried before to discharge Ratcliff — a family member says it found nursing homes for her in California and New Jersey — but it sparred with a judge from Ratcliff's home county, who halted the transfer. That order, from a Surry County District Court, held until Ratcliff turned 18.
The hospital's lawsuit charging Ratcliff with trespass was filed in September, the month after she turned 18. It said her continued refusal to move to a nursing home out of state "constitutes a trespass" and asked a different court to require Ratcliff to accept the placement.
In November, Ratcliff's lawyers won an order from the new court that stopped the hospital from immediately moving her out of state.
Moving to another state would make it difficult to get back to North Carolina, says Lisa Nesbitt of Disability Rights North Carolina, which is representing Ratcliff. If Ratcliff moves to a nursing home in another state, Nesbitt says, she becomes a citizen of that state and gives up her North Carolina Medicaid. That would make it unlikely she could return to North Carolina, according to the response to the hospital's lawsuit.
"Right now, there is no known path back for her if she leaves the state," says Nesbitt.
There's another key player here: the state Medicaid agency. It's responsible for making an effort to help people like Ratcliff who are eligible for Medicaid get long-term care — in their own homes, not in a hospital or a nursing home.
NPR asked to speak to someone at North Carolina's Medicaid agency about what they're doing to help Ratcliff get out of the hospital.
The answer: "No comment."
In 2010, an NPR investigation found that all states and the federal government had failed to follow up on a new right of people who need long-term care to receive it in the "most integrated" and appropriate setting. That obligation was established by a 1999 U.S. Supreme Court decision in Olmstead v. L.C. Two Georgia women with developmental disabilities and mental illness, Lois Curtis and Elaine Wilson, argued that under the Americans with Disabilities Act, they had a right to get care in their community, not in state hospitals.
The NPR investigation found that although nursing homes mainly serve elderly people, there were more than 6,000 children and youth up to age 21 living in them and thousands more in their early 20s — many of whom could live in their communities with proper medical support.
A new NPR analysis found that although there are fewer young people in nursing homes today, thousands still live in one. NPR looked at federal data that, as of September 2023, showed 6,594 people age 30 and under living in American nursing homes.
One issue, policymakers say, is that younger disabled people in nursing homes often have some of the most complex medical needs, and those who are easier to set up at home — more often older people — get services first. Researchers writing in the journal Health Affairs faulted state agencies for allowing a "stagnation in nursing home use for younger people with disabilities."
"The cost is stolen lives," says co-author Ari Ne'eman, a Ph.D. candidate in health policy at Harvard. "People end up living out years, decades, sometimes their entire lives in institutional settings where they don't want to be and don't need to be."
Complex medical needs require support
If she were to live in her own home, Ratcliff would need a lot of caregiving support, probably 24 hours a day. She'll need aides, and likely a nurse, to watch that her ventilator works, that her tracheostomy tube — which directs the air from the ventilator to her lungs — doesn't get clogged or dislodged. She'll need someone to move her in bed and in her wheelchair so she doesn't get painful pressure sores.
"She absolutely can get that care at home," says Joonu Coste, a lawyer at Disability Rights North Carolina. Coste says the task now is for the state Medicaid agency "to put a package together that will support her so she can be in the community and do all the things that the rest of us want to do in the community: attend school, have friends, go out with friends. It's all possible, but Medicaid has to step in and help put this package together for her."
It takes time to put together the staff of nurses and aides needed to care for someone with complex medical needs, and there's a shortage nationwide of home-care aides, called direct service professionals. At one point last year, a nurse who had worked with Ratcliff considered caring for her in her own home, but that fell through.
Care at home is usually cheaper than what it costs for a disabled person like Ratcliff to live in a hospital and even in a nursing home. Holly Stiles, an attorney with Disability Rights North Carolina, notes that the state's Medicaid program has said Ratcliff is eligible for at-home service programs that, by law, are required to be cost neutral to the state overall.
Alexis Ratcliff says she needs to leave the hospital and have her own home in order to live a full life.
"You can't put a social butterfly in a bubble and think that it's going to be OK. And it's just not," she says.
From her hospital bed, she attended classes online at her high school in rural Surry County, northwest of Winston-Salem. She graduated last spring and was selected to the National Honor Society.
But it took a court order for Ratcliff to attend her high school graduation. A Surry County judge ordered the hospital to let her attend and to provide transportation and a nurse to accompany her.
Ratcliff won a full academic scholarship to nearby Salem College, a small women's school.
Ratcliff takes classes there online, for now. But her wish is to one day have a more normalized college experience and attend classes on campus.
"She loves people," Ratcliff's aunt, Susan Ratcliff, says. "And she would love to be here with her peers. She has missed out on so much of that."
Susan Ratcliff notes that before Alexis had to live in the hospital she took a school bus every day, in her wheelchair, to middle school, where she made good friends.
At Salem, school officials are working to help Ratcliff succeed. They've already thought out how to move classes to wheelchair-accessible rooms if Ratcliff one day comes to the campus of brick sidewalks and old brick Colonial-era buildings, some built in the 1700s and 1800s.
When Ratcliff was unable to leave the hospital to attend office hours, her faculty adviser, Diane Lipsett, took office hours directly to Ratcliff, making periodic visits to the hospital.
"We talk a lot here — all of my colleagues talk — about meeting students where they are," says Lipsett, an associate professor of religion. "Sometimes that's metaphorical. With Alexis, it means a different space, too."
Ratcliff can't use her hands. But from her hospital bed, she uses her voice to control her iPad and iPhone, calling friends and family, sending emails and doing her schoolwork. Every day, she calls her younger sister, Apple.
In addition to the chance to attend college, Ratcliff says it's important to stay nearby so she can be close to family. Established in a home of her own, she could see her sister more, along with other friends and family, including her aunt and her grandfather.
Living in their own homes
Around the country, many people with Ratcliff's high level of disability do live in their own homes. Tracy Chen, born with a rare muscular disorder, lives in Pennsylvania, where the state set up a program to provide in-home care to people with complex medical needs. Chen says, "Don't let people tell you you're not able to do something."
The 21-year-old, who uses a ventilator and electric wheelchair, has lived in her parents' home, in group homes and in a hospital for a brief period in 2022, before she moved into her own apartment in Philadelphia with a full-time nurse and aides. She appreciates the freedom to invite family over to play board games or to take an Uber to the Cheesecake Factory for lunch with friends.
In Charlotte, N.C., technology helps Hogan VanSickle live in a low-slung brick ranch home with her mother. VanSickle, a quadriplegic, shows how she uses voice commands to set her bed to shift every 45 minutes through the night to help her avoid pressure sores.
After an auto accident in 2014, VanSickle spent 2 1/2 years in a nursing home. "I was miserable," she says.
VanSickle says overworked aides there failed to do basic care, like moving her body so she wouldn't get bedsores. She had lots of them; two got infected down to the bone.
"It was probably the most painful experience of my life, easily," she says. "I would have taken 10 spinal cord injuries over that bone infection. I mean, it was just so ungodly painful."
During the time in the nursing home, she had to be hospitalized for months after developing dangerous sepsis. She said she'd go weeks — 21 days at one point — without a shower.
Things got better for her when North Carolina's Medicaid program moved her into a house with her parents and arranged for aides to come in seven hours a day to help her with things like getting out of bed, getting dressed and eating.
VanSickle, who is 41 now, went back to school — where she studies law. She attends a hybrid online and on-campus program at the University of Dayton Law School. She'll take the bar exam in July.
VanSickle wants to become a disability rights lawyer and help people like Alexis Ratcliff. Recently, she spoke to Ratcliff. "At 18, to be able to stand up against a hospital and say, 'This is not OK, you're not going to do this to me,' is so impressive," VanSickle says.
Living in the hospital, Alexis Ratcliff was forced to grow up fast.
She says her parents' lives were marred by drug use. Her father died a few years after the auto accident.
And last month, Ratcliff's mother died, too.
Anna Marie Crim spent years in prison for the accident that injured her daughter so badly. When she came out, in 2020, it was Ratcliff who reached out.
"When she first got out, she was doing fantastic," Ratcliff says of the mother she barely knew. "She was sober. She was working at Goodwill."
They talked on FaceTime frequently.
"We were really close at that moment," Ratcliff says.
But then, Ratcliff could tell from their conversations that her mother was hanging out again with old friends who abused drugs.
Ratcliff — then just 15 — warned her mother to stay away from them.
Her mother's calls became less and less frequent.
When she died in January, she was 37.
"I love her. I do," she says. "We never had a perfect relationship. Never the perfect mother-daughter relationship that I would love. And I am sad that she's gone."
Still, the relationship was stressful. "The stress of worrying about her," Ratcliff says. "The stress of knowing whether she's alive or not. And the stress of calling and seeing if she's high. And just the stress of the drama, the pain and the heartache."
Now Alexis Ratcliff is dealing with a different stress. She says she intends to finish her fight to get out of the hospital, avoid the nursing home and get the life she dreams of — to finish college and move to a place she can call home.
Robert Benincasa contributed reporting to this story. The radio story was produced by Graham Smith.