Marvin L. Dawkins last week in Randallstown, Md. He spent 11 years
in a nursing home before prevailing in his efforts to live at home.
(Photo by Mark Makela for The New York Times)
Marvin L. Dawkins was a 53-year-old AT&T manager when a blocked blood vessel left him paralyzed. It took 11 years, one lawsuit, repeated tangles over Medicaid rules — and a chance meeting on a church van — before he could extract himself from a nursing home outside Baltimore.
Now he lives in an apartment with the assistance of an aide, gets out for a job that he says gives him purpose, socializes with new friends and old ones, and revels in his freedom. "I determine what happens to me," he said. "I was there at the nursing home basically just laying in bed and watching TV. I didn’t think it was much of an existence."
Across the nation, many other Americans who could live elsewhere with help are unwillingly confined to nursing homes or long-term care facilities. Nearly 20 years after the Supreme Court ruled that disabled people requiring public support were entitled to live in their community, rather than in institutions unless medically necessary, the federal government and states are still far from achieving that goal. Because of budget cuts, inflexible rules, a patchwork of programs and a widespread failure to bolster alternative care, others like Mr. Dawkins describe feeling stuck in deeply unsatisfying, sometimes miserable, settings.
"Those people are not in view," said Eve Hill, the deputy assistant attorney general in the civil rights division at the Department of Justice. "We forget about them because they are not in our everyday lives. And that just can’t be the answer. We can’t ignore this."
Since 2009, the department has conducted investigations, brought lawsuits and settled with eight states over compliance with the court decision, which Ms. Hill said changed the assumptions of what people can do. "That requires us to unbuild something," she added, "and to build it differently."
Some states, including Minnesota, Oregon and Washington, have made real progress, taking steps like shifting more Medicaid dollars to home support, training caregivers to administer medications and paying family members who provide assistance. But in many others, government inaction and structural obstacles like a shortage of home health care aides have often made nursing homes the only option. South Dakota was singled out last week by federal officials who threatened to sue if the state did not fix its problems.
More than 1.4 million Americans live in nursing homes, but it is hard to know how many of them could move back home. Federal data suggests that about 155,000 nursing home residents have a low need for round-the-clock assistance. And about 217,000 people are of working age, another group that experts say could function well at home. But long-term care experts said that some residents who are sicker might also be good candidates to leave.
Sharon Overall of Fenton, Mo., 65, who entered a nursing home for what was to be a month of rehabilitation after injuring her spine, ended up spending 18 months there, losing her house, car and life insurance policies with nearly all her income going to the nursing home.
When Latrell Head, a 32-year-old single father in Atlanta, entered a nursing home after a leg amputation in October, workers there for a while would not allow him to leave to see his 8-year-old son or search for an apartment. Such facilities typically require relatives to sign residents out. "A prisoner has more rights than I have," he said he felt.
Mariussi Ogando-Rodriguez, 29, said she feels lonely among the hundreds of mostly older residents at the Manhattan nursing center where she has lived for three years. A former accounting student and cashier at Chipotle, she needs dialysis three times a week, but could care for herself. Gesturing toward a group of people watching television last week in a recreation room that smelled like urine, she said, "Sometimes I feel desperate."
A range of factors conspire to prevent residents from leaving. In many states, Medicaid programs restrict home health services, limiting the hours of care, for example. Waiting lists are common. Mentally ill people, for whom nursing homes are shelters of last resort, are particularly difficult to place. And everywhere, it seems, affordable, accessible housing for disabled people is in short supply.
Living at home is not the right choice for everyone, of course, even with assistance. Some people are too ill. Managing aides can be daunting, and family members might not be able — or willing — to care for relatives or share their homes, particularly when cognitive skills are impaired. For those without family, living alone can be isolating.
Still, about half of Medicaid spending on long-term care now goes toward services in the home or community, compared with less than 20 percent two decades ago, though that varies widely by state. Health care officials predict demand for in-home services will only grow as the population ages. Emily Johnson Piper, commissioner of the Minnesota Department of Human Services, said, "The baby boomers in Minnesota and across the country have the expectation that they will be offered and afforded availability of services for them to live out their retirement years in their communities."
Many states have concluded that caring for people at home is more cost-effective. Washington State, for example, has found that its costs for one nursing home resident would pay for home care for seven people. Alabama calculated that it cost the state about $25,000 a year less, per person, to offer care at home.
The few studies that have compared the outcomes of people in nursing homes with those cared for at home have reached mixed conclusions. In one recent study, researchers surveyed thousands of former nursing home residents. They reported significant improvements in satisfaction and fewer unmet needs for help with personal care. However, more than three-quarters of them said they had visited an emergency room or been admitted to a hospital or nursing home during the first year of living in the community. Some advocates have also raised concerns about abuse in unregulated home care.
Representatives of the nursing home industry acknowledged that many residents do not need to remain in their facilities. But they said better alternatives were required.“If there is no one with the state to help coordinate that transition process, then there is nowhere for that person to go,” said Mike Cheek, a senior vice president at the American Health Care Association, which represents for-profit nursing homes.
South Dakota has one of the worst records in the country. Nearly 17 percent of its nursing home population is classified as having a low need for the services provided in an institution, among the highest percentages of any state, according to an AARP report.
Shane Bear Heels, 48, has spent more than a quarter of his life in a small nursing home in White River, S.D., overlooking a horse pasture and open field. Most residents there are members of the Rosebud Sioux Tribe, whose reservation is nearby.
A quadriplegic since crashing his car in 2001, Mr. Bear Heels said he receives good medical care and takes pride in helping his fellow residents. But he also yearns for more independence. He said he would like to spend more time outside, but the unpaved roads and dearth of sidewalks in the area made that difficult
"I definitely would like to be in a different setting," said Mr. Bear Heels, who worked as an electrician before his injury. "Who wants to be like elders?"
He needs help repositioning his body while sleeping and getting into his motorized wheelchair. But once situated there, he is mostly self-sufficient until bedtime. He uses his mouth to maneuver the chair, flip through television channels and send emails. But for now, he appears stuck.
Like some other nursing home residents, Mr. Bear Heels said he has no one who could serve as his advocate and does not know where to turn for help to live elsewhere. (Federal rules now require nursing homes to ask residents at least quarterly whether they want to talk with someone about living in the community and, if so, connect them with a local agency.) He does not own a house, and even if he did, finding reliable home health care workers would be difficult. Many aides, who are relatively low paid, cannot afford cars to reach clients in rural areas like his.
In its report, the Justice Department acknowledged that South Dakota’s geography and limited work force posed challenges, but it also said that the state had not made better use of existing programs, including one that places disabled people in small, family-style group homes. The state has moved only 10 people home from nursing facilities since 2013 as part of a federal grant to do so, according to the federal report. Kim Malsam-Rysdon, South Dakota’s secretary of health, said state officials agreed that community-based care was preferable in many cases, but that "it’s just a balancing act of the ideal and reality."
Minnesota faces some of the same challenges, but it has managed to move more than 3,000 people from nursing homes to the community since 2010 through one program. Others provide alternatives so people do not have to enter nursing homes.
Accomplishing that has not been easy, state officials said: Each person needing support requires a network of people and organizations to address housing needs, provide assistive technologies and find grants and programs to cover these costs.
Minnesota and other states, such as California, allow public funds to be used to pay family members for the care they provide. In San Francisco, Alice Wong’s parents turn her at night to prevent bedsores and work with aides hired by Ms. Wong to provide much of the near-total care she needs because of a progressive nerve disorder, spinal muscular atrophy. "It’s the best of both worlds," said Ms. Wong, 42, the founder of the Disability Visibility Project. "All disabled people should have that choice across the country."
Mr. Dawkins, the former nursing home resident from Baltimore County who was paralyzed, said the vulnerability he sometimes feels at night when he has no aides to help him is outweighed by the control he has over his daily activities. At the nursing home, he often had to wait up to an hour for a response after pushing his call button, he recalled in an interview, and aides would wake him at 3 a.m., when it suited their schedule, to dress him for church services hours later.
It was on a ride to church that he met an advocate who helps nursing home patients apply for support services to live independently. He sued the State of Maryland, which had denied him Medicaid funding for at-home care, but he won the assistance two years ago. Now he has a job going door to door at nursing homes, including the one he left, identifying residents interested in following the same path.
"I’ve had people when I told them about the program cry, break down and cry," he said.