As a television blasted on the other side of the curtain of his shared nursing home room in the District, 87-year-old Edward Stith sat near his prosthetic leg and wondered if he would ever get out of there.
“Birth certificate, Social Security, government-issued ID — everything they asked for, I gave it to them, and they’re not giving me nothing,” he said, adding that he would prefer to live on his own with someone coming to help with bathing and meals. “I wasn’t supposed to be here no three years; I thought I’d be here maybe a year.”
Stith is among several hundred nursing home residents who are plaintiffs in a class-action lawsuit alleging that the District has failed to comply with a federal mandate to move eligible and interested Medicaid recipients out of nursing homes and into the community, where they are entitled to in-home care.
The suit, filed in 2010 by University Legal Services, AARP Foundation Litigation and the private law firm of Arent Fox, is scheduled to go to trial Sept. 13. It contends that an estimated 500 to 2,900 people with disabilities are “unnecessarily institutionalized in nursing facilities, segregated and isolated from their families and friends. These individuals desperately want to return to their communities.”
Surveys consistently show that older people prefer to stay in their homes for as long as they can, and federal and local government policies have increasingly moved in that direction. A 1999 Supreme Court ruling said that public entities must provide community-based services to people with disabilities whenever possible and that unnecessarily institutionalizing them is a form of discrimination.
Serving people at home is also more cost-effective, advocates say.
“The no-brainer part of this is this would actually save the District money,” said Kelly Bagby, an attorney for the AARP Foundation, adding that there are people who have secured housing but are waiting for the city to set up in-home services. “We’re saying that they can do more and should.”
The Office on Aging and the mayor's office declined to comment on the lawsuit. City officials also did not respond to a request for the cost of nursing home care compared with in-home care. But Marjorie Rifkin, managing attorney for Disability Rights DC at University Legal Services, said the District had reported that for 2014, the average cost was $52,334 a person for in-home care and $69,886 for nursing facility care.
Despite the potential savings, getting people out of institutions and provided with home care requires work upfront to find appropriate housing and to set up the services, Bagby said. “D.C. is just not setting enough resources to this task,” she said. “Last year, D.C. was very proud of moving 35 people from nursing homes to the community. At this rate, a lot of people will never get out, and a lot of our plaintiffs have died waiting to get out of the nursing home.”
Twenty-six people were moved in 2014, and previously the numbers were in the teens or below, Rifkin said.
The suit also alleges that people with disabilities have been forced into nursing homes because the city has not provided adequate alternatives.
Federally and state-funded waivers for Medicaid recipients who are elderly or have physical disabilities — known as EPD waivers — allow people to receive up to 16 hours a day of in-home services and case management if they need help with at least two activities of daily living such as bathing, eating or dressing. If they need 24-hour care, they can get an additional eight hours through the D.C. Medicaid Personal Care Assistance program.
The program Stith qualified for, Money Follows the Person, is a federal Medicaid program that helps older people and those with disabilities move to their communities from nursing homes. To qualify, a person must have been in a nursing home or hospital for at least 90 days and must have received Medicaid in the last month of services there.
The Office on Aging’s executive director, Laura Newland, said that in the past, people had had trouble applying to the EPD waiver program, so the application process was revamped in 2015.
Newland could not confirm how many people have been moved in recent years from nursing homes into the community. But she said that of about 4,000 slots for EPD waivers, available to people who have made that transition and also to those who have never moved from their homes, only a little more than half have been filled.
“We have been kind of waiting to see if when we changed the application process for the waiver, would that change the utilization of the waiver,” she said, adding that there has not been a change. “It just looks like we have more slots than people who are qualifying and wanted to use those services.”
She added that the expiration date on MFP vouchers such as Stith’s are advisory. “That deadline, honestly, it’s a deadline because we want to make sure that people use the voucher,” she said. “The deadline is extended on an individual, case-by-case basis. No one has been denied a voucher because of that deadline.”
Newland said that although the city sends workers to help people complete the applications, “nursing-home social workers can gather the information on their own as well.”
But most facilities don’t have enough staffing to do so, Rifkin said. Transitions Healthcare, the 360-bed Anacostia nursing home where Stith lives, has three social workers, she said. “Other states have far surpassed the District’s level of providing basic transition assistance. . . . There’s no system here.”
To Rifkin, the unfilled EPD waiver slots are a sign of a problem. “Most states have years-long, in many cases decades-long waiting lists to get home services. It’s a big mystery. We think that nobody’s willing to go out and help them get these services.”
James Edelin, 61, says he’s too young to spend the rest of his life in a nursing home. A former addiction counselor who has worked with nonprofit groups, he has lived at Deanwood Rehabilitation and Wellness Center in Northeast Washington since he had a kidney and liver transplant in 2013. He said he is on a waiting list for housing.
“I want to go back to the community. I want to go back to work if I can,” he said. “Here, every room you go to there’s somebody there. I use a curtain in my room, but that doesn’t do anything for sound. If you wanted to have an intimate conversation I don’t know where you’d go. The sooner I can get out of here, the better.”
Stith feels the same way. He’s sick of institutional food — “we eat turkey all the time” — and would love some potato salad and barbecued ribs. He also misses the beach.
“I served this country. I gave this country four good years of my life,” he said, “and they tell me they can’t give me a house or apartment to live in?”
