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The District leads the nation in the proportion of disabled young people who live in nursing homes. It doesn’t have to.
Photo Essay by Darrow Montgomery
On a warm Friday afternoon in late September, Lionell A. Betterton Sr. rests on the front porch of the Cardinal O’Boyle Residence for Priests. Since January, Betterton has lived next door, at the St. Thomas More Nursing Home, just across Eastern Avenue in Hyattsville, Md.
Betterton spends most of his days out here, gazing across the green lawn, shooting the breeze with his nursing home buddies. And every other day, he goes home to see his wife, who still lives with their seven kids Laurel, Md. All in all, a leisurely way for Betterton to spend his twilight years. Except for one thing: These are not his twilight years. At age 32, Betterton still has decades left before he hits retirement age.
Stories like Betterton’s explain why D.C. leads the nation in yet another depressing statistic: the number of young people living in nursing homes. On Aug. 29, 1988, at around 9 p.m., Betterton had just gotten off the No. 92 bus heading toward Garfield when he was robbed by two men at gunpoint. The robbers took the gold chains around his neck, the watch on his wrist, and his wallet. They were about to leave when Betterton got a glimpse of one of their faces.
Rather than risk identification by their victim, one of the attackers shot Betterton in the neck at point-blank range. The bullet damaged his spinal cord and he is now a quadriplegic. Yet Betterton doesn’t consider this a total tragedy. “I was blessed,” he says. “Most people who get shot in the neck at point-blank range, their head pops off.”
Over the past 10 years, Betterton has passed from nursing home to nursing home. Some have been good, he says, and others have been terrible. Along the way, he’s had 25 surgeries, including the amputation of his right leg, which he lost because of infected pressure sores. “I made this myself,” he says proudly, tapping his prosthesis. “Out of styrofoam, cardboard, and a bungie cord.”
Whenever Betterton speaks, he sounds intensely upbeat. He doesn’t cruise in his motorized wheelchair so much as zoom from place to place. Not surprisingly, he works as an in-house courier at the nursing home. He’s made a life for himself here, but he says he’d rather be with his family. His youngest child is only a year old.
When asked whether he thinks he’ll be able to make the transition to life outside after being in an institution for so long, Betterton points to his legs and replies, “If I can adjust to this, I can adjust to anything.”
Going home for good, however, is no simple journey. The apartment where Betterton’s wife and kids live is not set up for a person in a wheelchair. Even if it were, Betterton would still need a nurse to come for two hours in the morning to help him get out of bed and to assist with his bowel and bladder care. The nurse would also have to come back at night to help him back into bed.
Almost anywhere else in the country, the obstacles keeping Betterton from moving home would be surmountable. But Betterton receives his Medicaid benefits through the District, where accessible housing and home care are practically non-existent for people who are poor, paralyzed, and under retirement age.
As a result, of the nearly 4,000 District Medicaid recipients who live in nursing homes, 1,368roughly one-thirdare younger than 65. The national average is 10 to 12 percent. Young disabled D.C. adults are scattered in nursing homes across the metropolitan area, with some even as far away as Delaware.
Relocating people like Betterton from nursing homes to wheelchair-accessible apartments where nurses can visit would be an expensive arrangement. But it would be an awful lot cheaper than the status quo, in which the District spends an average of $53,000 for each Medicaid recipient in a nursing home. According to federal Medicaid statistics, community-based services cost about half that.
And the current arrangements are not merely wastefulthey’re also illegal. The District has had 27 years to comply with federal requirements that 5 percent of its public housing units be accessible to the mobility impaired. But only about 2 percent of units currently qualify. And the city has not been able to offer more home health care services to the disabled because Medicaid officials have not applied for a waiver from the federal government that would free up Medicaid dollars to do so.
“I would like to live in the community. I would like to get my family back together,” says Mikel Elmore, 46, a resident of MedLink nursing home in Northeast. Three years ago a car hit Elmore while he was riding a bicycle. The accident left him with two flattened vertebrae. He is paralyzed from the waist down.
After getting out of the hospital, Elmore tried living with his brother, but he says his brother just didn’t know how to take care of him properly. He has been at MedLink ever since. Sitting in his wheelchair, surrounded by plants and pictures of his wife and 17-year-old daughter, he says he could make it on his own now if he had an accessible home and an attendant four hours a day. “I know what I need. I could adjust well to living on my own. I just have no place to go.”
Bobby Coward sits in his wheelchair in front of 941 North Capitol Street NE. He is here to visit the D.C. Office of Disability Affairs, part of the city’s Department of Consumer and Regulatory Affairs. Officially, the office is supposed to help businesses comply with the Americans with Disabilities Act (ADA) and investigate those that do not. But its building doesn’t even have an automatic door.
So Coward must wait until someone opens the door for him. “I’ve tried to get somebody to do something about that door,” Coward says as he rolls through the lobby.
A former airplane mechanic, Coward became a quadriplegic after a car accident eight years ago. Today, he’s an activist with the local chapter of ADAPT, a national disabilities rights group. He and ADAPT attorney Marjorie Rifkin have met with the D.C. Housing Authority to lobby for an increase in the number of handicapped-accessible public housing units. City officials say they are working with groups like ADAPT to find solutions. But, like the non-existent automatic door, they have fallen short of their stated goals.
According to the D.C. Housing Authority, just 221 public housing unitsabout 2 percent of totalare accessible to the mobility impaired. The real number may even be lower than that, says Linda Royster, the former Disabilities Act coordinator for DCHA, and now the executive director of the Disability Rights Council, a regional advocacy group. According to Royster, few of the units the housing authority says are accessible actually meet federal accessibility requirements. “Virtually all of these units do not comply with any current accessibility standard,” she notes. “Many of these units were built a long time ago when there were no standards.”
And many of the units that do exist are also for single people with disabilities. “Government officials think people in wheelchairs don’t have sex. There’s no preparation for families,” says Hannah Pitts-Galmore, the acting director of the Independent Living Center, a non-profit that connects the disabled with services. It’s one thing when your disabled population is largely geriatric. It’s quite another when you have hundreds of twenty-somethings in wheelchairs.
Nearly 2,000 District families suffering unspecified disabilities are currently waiting for accessible public housing, according to the housing authority. This number includes people with a broad range of disabilities, some of whom are in wheelchairs and some of whom are currently in nursing homes. The wait can last anywhere from six months to several years.
Disabilities rights advocates contend that housing officials squandered an opportunity to comply with the 1973 Rehabilitation Act, the precursor to the American With Disabilities Act, while the public housing agency was under the direction of court-appointed receiver David Gilmore. “Gilmore spent $150 million rehabilitating the D.C Housing Authority. He spent it well. Thousands of units are now decent, respectable, nice places to live, as all public housing should be. But he did not build one accessible housing unit,” says Royster, who worked under Gilmore for two and a half years. “They were rehabilitating those units anyway. Why not make them accessible? All it took was the will to do it.”
DCHA officials admit that they have not done much to address the lack of accessible housing. They say most of the accessible units created in the last few years have been in senior citizen buildings. But they insist that they have laid important groundwork so they can now focus on creating more accessible units. “Five years ago, people had no heat. We had to keep water from infiltrating buildings. Overall, the condition of the housing stock has improved greatly,” says Chris Stennett, DCHA’s director of development and modernization administration.
If bureaucrats can’t manipulate building plans to accommodate the disabled, they can at least manipulate numbers: After DCHA tears down several housing projects, the total number of units the agency will be responsible for will shrink from about 10,000 to about 8,500. According to Michael Kelly, the agency’s new chief executive officer, that means that DCHA will have to have 427 accessible units. Accepting the premise that the housing authority already has 221 truly accessible unitswhich Kelly says the agency will re-evaluate to see if they meet current standardsthe agency would then need to create 206 new accessible units to comply with federal law.
Kelly adds that the housing authority has either completed or plans to complete 88 units with HOPE VI funds from the Department of Housing and Urban Developmentleaving just 118 units for the agency to build over a three-year period. Sounds simple enough, right? But the catch is that Kelly can’t say when that three-year period will begin. “Assessments need to happen. Budgets need to be drafted,” he explains.
Some work, at least, is underway. Housing authority officials have promised to make 5 percent of the 324 mixed-income housing units they’re building on Wheeler Road SE wheelchair accessible and open to adults of all ages. But as Rifkin points out, even if 5 percent of all new public housing units were accessible, that would only add up to 20 or 30 unitsfar less that what’s necessary to reach the federally mandated 5 percent of all public housing unitsand much less than what’s necessary to meet local need.
While a simple goal such as making the city comply with the law provides an appealing target for activists, it won’t do much for people like Bettertonfor the simple reason that laws on accessible housing weren’t written for cities where so many young men wind up paralyzed because of violent crimes. The 427 units of housing required by law wouldn’t cover half of the under-65 population currently residing in nursing homes, most of whom Royster estimates could live alone under the proper circumstances.
Kelly contends DCHA is working on the bigger issue, too. He says he’s working with the mayor’s office to develop incentives for Section 8 landlords to create more privately-owned apartments suited for the disabled. There are 4,721 families with disabilities currently waiting for accessible Section 8 housinga quarter of the total waiting list. But Section 8 requirements don’t include any provisions to make apartments wheelchair accessible. Because of the cost, few landlords are willing to make apartments accessible on their ownand public housing authorities have no tools to force them to do so. “We don’t have that kind of stick,” says Kelly. So he and the mayor hope that a carrot will do just as well.
No one wants to live in a nursing home in his twenties. But it’s worse to be trapped inside a housing project where you can’t navigateor even leave on your own.
Daniel Rowe, 22, lives in the Potomac Gardens Housing Project in Southeast with his mother and sister. Since being shot in the back several times in a gang-related dispute six years ago, he hasn’t been able to feel or move anything below the waist. The lack of sensation means he is often the last to realize that sores on his body have become infected.
Rowe was already injured when he and his family first moved into a second-floor Potomac Gardens apartment five years ago. His mother had to carry him and his wheelchair down the stairs when the school bus arrived to take him to Ballou Senior High School, and then carry him and the chair back up when he came home in the afternoon.
Rowe can’t use the bathroom in his apartment because the doors are not wide enough to fit his wheel chair, nor is there enough room inside for him to maneuver. As a result, he hasn’t used the bathroom in nine months. To bathe, his mother and sister leave buckets of water around him so he can wash himself. To urinate, he wears a catheter tube and a bag.
In August, Rowe landed in Washington Hospital Center, after Coward and Rifkin came knocking on his door. The two found him while making the rounds at Potomac Gardens to see how disabled residents were faring. When they met Rowe, he had open sores so severe that his bones were protruding from his skin. Coward and Rifkin alerted the housing authority and Medicaid officials that Rowe needed to be hospitalized immediately.
Housing authority officials offered to move Rowe to an apartment in the Lincoln Heights Housing Project, but he refused because that was where he was shot. So now, housing officials plan to move Rowe to a two-bedroom unit inside the development on Wheeler Road. Rowe’s mother signed a lease for the apartment earlier this month.
“The D.C. government doesn’t like to be embarrassed,” notes Coward. “But they don’t exactly want to help you either.”
Rowe required surgery for his sores. He might not have had to go to the hospital at all, however, if he had had a nurse to regularly check his skin, and if he had been able to bathe properly. He says he has had home health attendants in the past, who came mainly to change the bandages on his pressure sores. They never stuck around for very long, though. “A nurse would come for a while then stop because they were afraid to come to my neighborhood,” he says.
Rowe’s mother complained to her son’s social worker. But nothing came of her complaints. So rather than live at the mercy of skittish attendants, she started changing her son’s bandages herself.
Administrators for local home health care companies say they do not send home attendants anywhere they believe their welfare is in danger. When home health care aides go AWOL, clients can file a complaint with the Medical Assistance Administration, which administers Medicaid in the District; the Health Regulation Administration, which monitors home health agencies; or the 24-hour hotline of the License and Regulation Administration. But there is no law or regulation that requires an aide to provide services to a client if the aide doesn’t wish to.
And that’s when a young, disabled person can get a home health aide in the first place. Medicaid offers a limited amount home health care services, 36 visits a year. Pitts-Galmore estimates that most disabled adults require about six hours of individualized care each day, as well as a homemaking attendant who can perform other chores, such as shopping and laundry.
D.C. Medicaid pays for some homemaking services for individuals with physical disabilities through its Personal Care Aide Program. It could offer more healthcare and homemaking services. In fact, the city does have more services available for the elderly, the mentally retarded, and developmentally disabled. But before it can do the same for disabled adults under 65, the District must secure a Medicaid waiver to set up a program specifically for that group, or expand an existing one. Herbert Weldon, the director of D.C. Medicaid, says he is considering expanding the current waiver program for the elderly to include younger disabled adults.
Last month, Ward 1 D.C. Councilmember Jim Graham and Ward 8 Councilmember Sandy Allen introduced the “Medicaid Community Attendant Services and Supports Act of 2000,” or MICASSA. Every member of the D.C. Council agreed to co-sponsor it. The bill requires the city “to provide coverage for community-based attendant services and supports under the Medicaid program.”
But Weldon notes that even if proposed legislation becomes law, the process still may not speed up. “We can’t implement a waiver until the feds approve it,” he says. “After all, it’s a federal program, not a District one.”
If Betterton ever gets to live outside of a nursing home, the first thing he says he wants to do is go back to school and get a job. “I need to set an example for my kids. I want them to be able to say, ‘My father works’ or, ‘He’s in college,’ not ‘He’s in a wheelchair and he doesn’t do anything all day.’ ”
The most important part of working, Betterton says, won’t be how much money he earns but how he earns it: “When I leave that front porch, it will be to do something clean and decent.” He once worked for Metro cleaning buses. But Betterton admits he also sold drugs “to make ends meet.”
Being paralyzed, he says, has freed him from the pressures of hustling. “When I was walking, I thought about nothing but money, wearing gold,” he says. “I thought that’s what you’re supposed to have when you get out of school.”
“Now, I don’t worry about selling drugs, being in the street,” says Betterton, who has had two years of college at the University of the District of Columbia. “I’m not locked up with some 300-pound guy named Timmy who wants to make me his girlfriend. I don’t worry any more that anybody is going to shoot me, or there’s going to be a drive-by.”
As for the men who held him up, Betterton says they ended up serving only four years in prison each. Seven years ago, he actually ran into the man who shot him. His attacker was more nervous about the encounter than he was, Betterton says. “I tried to tell him that I forgave him. He kept looking over his shoulder like something was going to happen,” Betterton recalls. He says he sees the other robber frequently. “We say ‘Hi’ to each other. He doesn’t recognize me.”
A few weeks later, on a chilly October day, Betterton seems to have lost any of the enthusiasm he once had for living on his own. Bundled up in a black leather jacket, he says he would rather stay in the nursing home.
It’s easy to see why, after he explains what happened to him over a recent weekend. Betterton was on his way to see his family when his wheelchair hit a bad piece of curb. The chair tipped over and Betterton tumbled out onto the concrete face-first. He couldn’t get back in his chair. He says he tried to yell for help, but he was in a wooded area near the nursing home and no one heard him. The next morning, a woman walking her dog found him. By then, he had been laying on the ground for 13 hours.
“If something should happen to me, I know that I can get the care I need here,” he says.
Roland “Chuck” Yates, 34, would rather take his chances. He applied for an accessible apartment when he first arrived at St. Thomas More three years ago, but he hasn’t heard anything. As soon as he gets an apartment, he says he’s leaving the nursing home. “A place of my own?” he says, smiling. “I’ll leave you a forwarding address, because I’ll be out of here.”
Like Betterton, Yates travels a lot. Three days a week, he gets up at 5 a.m. to go to classes at UDC, where he is majoring in psychology. He’s already become a sort of in-house troubleshooter: the other young residents turn to him with their troubles. “I’m like the wheelchair mayor,” Yates quips.
Being far too young for a nursing home isn’t the only thing Betterton and Yates have in common. The two actually knew each other before they were paralyzed. In fact, Betterton, Yates, and Rowe all come from the same far Southwest neighborhood.
Before Yates moved into the nursing home, he and Rowe reunited at National Rehabilitation Hospital. Rowe, who was in for pressure sores, returned to his room one day to discover that his new roommate was none other than “Big Chuck,” the guy who used to give him quarters for the ice cream truck when Rowe was small. Yates was there because he had been crossing the intersection of 18th Street and Minnesota Avenue SE one day on his way to work, when a white four-door sedan hit him, crushing his body against a row of parked cars. When Yates woke up three days later, he was paralyzed from the waist down. He doesn’t remember being hit. And the police never caught the person who hit him.
Yates visited Rowe recently at Washington Hospital Center because he heard his young friend was feeling blue. He says he often needs a lift himself. “This place is designed for old folks to die. I’m not old and I’m not going to die. I’ve got a lot of Remy still to drink. A lot of green still to blaze,” he riffs one afternoon in front of the priests’ home. “I’ll get me a little nurse for about four hours a dayand all night long depending on what she looks like.”
The guys around him chuckle. Yates stops kidding for a second.
“You can’t expect to wheel these guys out into the sun and they’ll be OK,” he says, nodding toward his friends. “You’ve got to give these dudes more to the life than this right here.” CP
“I’ve been thinking about going to a nursing home,” says Rickey McCombs, 26. “My grandmother doesn’t want me to, but that’s the only way I can see me getting to school. I want to be a lawyer. I so really want to go to school.” McCombs lives on the second floor of his grandparents’ house in Petworth. Before he can leave the house, he must crawl, step by step, down 20 steps to the street. On a good day, it takes him 25 minutes; on a bad day, 45 minutes. He can’t get into the bathroom, so he has sponge baths. “It’s not that I don’t get clean, but there’s nothing like a shower,” he says. “I’ve been dreaming about a shower since I left the hospital.” McCombs became paralyzed in March 1997 after two stray bullets hit him in the back. A year later, he was accepted to the University of the District of Columbia. But he couldn’t get to class regularly. “Basically, I’ve been lying in bed for almost four years,” he says. “I rarely go out. I get depressed a lot just laying here. I can’t help but get depressed. I don’t have anything to look forward to.”
“In a month, I hope to be out of here,” says Mwenea Ajanaku, 45. Ajanaku has applied to live in several apartments across the city since his Ivy City apartment burned down last year. Until he finds a new place that is wheelchair-accessible, he must stay at J.B. Johnson Nursing Center on 1st Street NW, near Union Station. Because of a rare disorder, Ajanaku has been a wheelchair rider all his life, but he has never lived in a nursing home before. He says he misses traveling: He’s driven cross-country six times. But right now, his priority is to find a place to live that is big enough for him and his family. His girlfriend and their infant son have been staying with his girlfriend’s mother since the fire. “I’ve already missed a year of my son’s life,” Ajanaku says.
In his room in the St. Thomas More Nursing and Rehabilitation Center in Hyattsville, Lionell A. Betterton Sr., 32, walks again, at least on screen. Using his hands and his mouth, he navigates his virtual body through a video-game version of a New York slum as snipers fire at him from tenement rooftops and grenades fall at his feet. Betterton says he used to sell drugs “to make ends meet.” Then one night 13 years ago, a robber shot Betterton in the neck at point-blank range. Now a quadriplegic, Betterton has lived in nursing homes for the past 10 years. Although he’s talked about leaving, a recent accident has made him think twice. “If something should happen to me, I know that I can get the care I need here,” he says.
At least once a month, Bobby Coward, 36, makes the rounds at public housing projects and nursing homes seeking out other wheelchair riders. On his journeys, Coward, an activist with the local chapter of the national disabilities rights group ADAPT, has met men and women who are either trapped in their homes without a ramp or a chair lift, or can’t live on their own because they don’t have accessible housing. Coward, who lives in the basement of his mother’s home on East Capitol Street NE, understands the daily frustrationsbut also the sense of liberation that comes with living in the community. Over the past year, he has been lobbying D.C. housing officials to build more accessible units and Medicaid officials to provide more services for the disabled. But he hasn’t had much success beyond bringing individual cases to the city’s attention. “The D.C. government doesn’t like to be embarrassed,” notes Coward. “But they don’t exactly want to help you, either.”
Three years ago, Mikel Elmore, 46, became paralyzed from the waist down after a car hit him while he was riding a bicycle. When he first left the hospital, he moved in with his brother. “When I laid down on his couch, little did I realize that I would be on the same couch for five weeks,” he says. It’s not that his brother and his family didn’t try. “They just didn’t know how to take care of me properly,” Elmore explains. So he moved into MedLink Nursing Center at 7th Street and Constitution Avenue NE. Now, he wants to move back into the community and work. “I want to help send my daughter to college,” Elmore says. “I know what I need. I could adjust well to living on my own. I just have no place to go.”
Three days a week, Roland “Chuck” Yates, 33, gets up at 5:30 a.m. so he can make 9 a.m. classes at the University of the District of Columbia, where he is studying psychology. He says he already counsels the other young residents at St. Thomas More Nursing and Rehabilitation Center. “I’m like the wheelchair mayor,” he jokes. He’s lived at St. Thomas More since he was injured in a hit-and-run two years ago. Besides being paralyzed, Yates says, he’s been shot and stabbed. “All that you hear in rap music, I’ve done it,” he says. Nursing-home life doesn’t suit him: “This place is designed for old folks to die.” He’s been waiting for a place of his own to come through since he came to St. Thomas More. “Getting out of here,” he says, “would be too sweet.”
Daniel Rowe, 22, has been at Washington Hospital Center since August, when activists seeking to help paralyzed people came across him in the Potomac Gardens public housing project. He had not been able to enter a bathroom in nine months, and his pressure sores were so severe that his bones were protruding. Rowe recently underwent surgery for the sores. The operations are over for now, but his legs still have patches of raw skin and his heels are bandaged. Rowe recalls that six years ago he was in the same hospital when he was first injured after being shot in a gang-related incident. “It’s a hurtin’ feeling spending Christmas, Thanksgiving, and birthdays in the hospital,” he says. “In the hospital, they throw Thanksgiving dinner for patients who can’t go home, but it’s not the same.” Now, he has something better to look forward to: He will be going home to a new wheelchair-accessible place on Wheeler Road SE.
Art accompanying story in the printed newspaper is not available in this archive: Photo Essay by Darrow Montgomery.