Alexis Ratcliff is 19 and she's lived, since she was 13, in a hospital in North Carolina. This week, the disabled woman moved to her own apartment. When she saw the spacious, renovated place for the first time, she celebrated. "Oh, it's beautiful," she said, her voice quiet and awed, as she maneuvered her power wheelchair down the wide and newly built wood ramp.
The Trump administration celebrated, too, and put out a press release to mark its role in helping the state get Ratcliff home. But the release from the U.S. Department of Health and Human Services left out one detail: The Trump administration, in its budget request for the next fiscal year, zeroed out the money for the program that helped Ratcliff move.
NPR described Ratcliff's plight in a story last year. She was a baby when a car accident left her with significant disabilities. She's quadriplegic and uses a power wheelchair, which she controls by moving a joystick with her chin. She needs a ventilator — 24 hours a day — to breathe.
Her grandfather became her primary caregiver. But when he developed serious health problems when Alexis was 13, there was no longer a home or people to care for her.
She moved into a hospital in Winston-Salem, N.C., for what was supposed to be a short stay.
It lasted for six years.
When Alexis turned 18 in 2023, the hospital — Atrium Health Wake Forest Baptist — tried to get her to leave and sued her for trespass. Officials said they needed the space in the intensive care unit for other patients, and wanted Alexis to agree to move to a distant nursing home in another state.
She refused. She wanted to stay near her family and friends, and to accept a scholarship from a local college.
Plus, leaving North Carolina would mean she might never return because there was no guarantee she could get back onto the state's Medicaid program.
Over the years, Ratcliff got excellent care at the hospital, which kept the quadriplegic teen free of bed sores and respiratory illnesses. Nurses and staff at the hospital became her friends and advocates, throwing parties on her birthday and when she graduated, with honors, from high school.
But things soured once the hospital pressured Ratcliff to move. Officials at the hospital took her wheelchair, her lawyers say, and told her that if she went outside she would not be allowed back through the doors of the hospital. After the NPR story, the hospital dropped its lawsuit against the teen.
Asked about Ratcliff leaving the hospital, hospital officials released a statement saying they could not comment on "specific cases due to patient confidentiality." And added: "Providing care in the most appropriate setting — especially for patients with extended or complex needs — is central to our mission. Hospitals, by design, are not intended to serve as long-term residences for patients over multiple years."
In the new apartment, Ratcliff said it's hard for her to pick a favorite place. Maybe it's the big bedroom with pink walls, she said. Or the large shower. At the hospital, she got six years of sponge baths.
Or maybe it's the patio with a grill.
"I love the patio," she says. "The patio might be my favorite. And that's because I love being outside."
In the hospital, going outside was an infrequent production that required finding or hiring nurses to take her. At her house, she gets to decide when she wants to go outside and get assistance from her round-the-clock staff.
Medicaid, a combination of federal and state money, will pay for a live-in caregiver, plus aides and nurses. It's expensive for someone with so much medical need to live at home, but, according to Ratcliff's lawyers and advocates, far less expensive than living in the hospital.
Summer Tonizzo, a spokesperson for North Carolina's Department of Health and Human Services, declined to specify costs for Ratcliff, but said the state Medicaid agency in 2024 supported 19,564 people living in their own homes at a cost of $617.4 million.
Last week, Robert F. Kennedy Jr., the secretary of the U.S. Department of Health and Human Services, noted the hard work it took — a collaboration between federal and state officials, Ratcliff and her advocates — to get the young woman into her own apartment.
"Sixty years ago, my father, as a new U.S. Senator, called for reform of institutions that confined people with disabilities to be 'condemned to a life without hope,' " Kennedy said in a statement. Now, he said, his agency had "fulfilled that vision by ending unnecessary segregation and helping a young woman build the future she deserves."
Kennedy's statement marked the 26th anniversary of the U.S. Supreme Court's 1999 Olmstead decision, which said keeping disabled people in institutions can be a violation of the Americans with Disabilities Act.
In 1965, Kennedy's father, Robert F. Kennedy, as a U.S. senator from New York, made an unannounced visit to Willowbrook State School, an institution for children and adults with intellectual disabilities. He would tell a New York state legislative committee that he was shocked to see residents "living in filth and dirt, their clothing in rags, in rooms less comfortable and cheerful than the cages in which we put animals in a zoo."
In 1972, journalist Geraldo Rivera, then a young local TV reporter, sneaked into the same state hospital with cameras, giving viewers a disturbing look at the same conditions.
Those and other investigations led Congress to establish a network — in all 50 states, every U.S. territory and the District of Columbia — of legal advocacy agencies with the power to go into institutions where people with intellectual disabilities live and provide legal representation.
There was wide bipartisan support for the protection and advocacy network, says Virginia Knowlton Marcus, chief executive director of Disability Rights North Carolina, the group that represented Ratcliff.
The bill creating the protection and advocacy network was signed into law by President Gerald Ford in 1975, she said. At the time, the network only represented people with intellectual disabilities. President Ronald Reagan signed a law expanding the program to represent people with mental illness. And President George H.W. Bush, who supported passage of the Americans with Disabilities Act, then signed a further expansion to let all disabled people be covered.
It's that last program, called Protection and Advocacy for Individual Rights, or PAIR, that covered Ratcliff. It allowed attorneys and advocates at Disability Rights North Carolina to file legal challenges, against the hospital and the state Medicaid agency, and to do the work to get her into her own home.
Today, the protection and advocacy network faces sharp cuts. The proposed Trump administration budget for the upcoming fiscal year would cut the program for people with mental illness by more than half, and eliminate PAIR, which this year has a $20 million budget.
The press office for the U.S. Department of Education, which funds PAIR, did not respond to requests for comment.
The U.S. Department of Health and Human Services, though, was more active in Ratcliff's case. After the NPR story in February 2024 about Ratcliff, Disability Rights North Carolina — which was already representing her — filed a complaint with the HHS Office for Civil Rights, alleging that she was being unnecessarily institutionalized and the state of North Carolina was not acting fast enough to find her a home.
Last week, HHS announced it had reached an agreement with North Carolina and laid out the state's commitment to helping Ratcliff live successfully out of the hospital. That work was started by the Biden administration's HHS and continued by the Trump administration.
In a statement to NPR, Paula Stannard, the head of the HHS Office for Civil Rights, said the agreement over Ratcliff "ends her unnecessary institutionalization and gives her the opportunity to have the future she hopes for and deserves under the law."
Stannard said she spoke to Ratcliff days before she moved. "Her optimism for the future shone through," Stannard said. "She tells me she wants to be a disability rights lawyer to help others in situations similar to hers."
Ratcliff says, now that she's in her own home, she'd like to go to college and then law school. She says maybe one day she will work for a protection and advocacy agency, like the one that helped her.
Her first big trip, though, will be to Washington later this month. Ratcliff says Stannard extended an invitation, from Kennedy, to help celebrate the 35th anniversary of the ADA on July 26.
Copyright 2025 NPR
