Joyce McWain-Gray, 56, is one of hundreds of people who were wrongfully kicked off a District Medicaid program that provides in-home workers to care for people who are elderly or disabled. McWain lives alone and is semi-paralyzed from the waist down. (Sarah L. Voisin/The Washington Post)

After a spinal condition paralyzed her legs six years ago, Joyce McWain-Gray crawled to her second-floor bedroom in a LeDroit Park rowhouse and holed up for nearly a year.

For her weekly medical appointments, the 56-year-old relied on District firefighters to carry her down the 12 steps from her room.

McWain-Gray grew hopeless, she said, until a social worker told her about the District’s Elderly and Persons with Physical Disabilities Waiver Program.

The Medicaid program sent an aide to her house for 16 hours a day to help her bathe, dress, cook and clean. She got a motorized wheelchair and learned to ride the bus.

Then one day her freedom ended.

Joyce McWain-Gray, 56, is one of hundreds of people who were wrongfully kicked off a District Medicaid program that provides in-home workers to care for people who are elderly or disabled. (Sarah L. Voisin/The Washington Post)

The District would no longer pay for her care during evening hours, she learned in a letter from her home health agency. Then, three days later, the aide left a stack of adult diapers and a cooler of food next to McWain-Gray’s bed and left.

“They helped me with everything, and then all of a sudden it was gone,” said McWain-Gray, who lives on $710 a month in Social Security benefits. “I can’t even go to the bathroom by myself.”

McWain-Gray was illegally dropped from the program, her attorneys say, along with hundreds of other elderly or disabled people in the District — a move that attorneys who work for the city concede might have been improper.

The Washington Post found that the District cut 366 people from all or some of the services they may have been eligible to receive in the nine months ended March 2012, according to records on file at the D.C. Attorney General’s Office. About a third of those people died, the office said. The District doesn’t know how they died because the program doesn’t get copies of death certificates, officials said.

“These are absolutely critical services. The safety net falls and we look at dire consequences,” said Rebekah Mason, a staff attorney for the AARP’s Legal Counsel for the Elderly, which has represented about a dozen people facing termination from the District’s Medicaid waiver program.

Reinstatement possible

Officials with the District’s Department of Health Care Finance, which runs the waiver program, deny wrongfully cutting anyone from home health services. They said many participants lose their spots when contract case managers submit incomplete or late annual paperwork required by federal law. They said people can request an administrative hearing to fight the terminations and get back into the program if they are eligible. In the past two years, the District reinstated about 600 people, said Yvonne Iscandari, program director for the department’s Division of Long Term Care.

“You are not going to have a perfect system,” said Iscandari, who oversees the waiver program. “You are going to have instances where somewhere in the process somebody’s eligibility was not updated.”

But even home health agencies that contract with the District — and take some of the blame — worry that the District’s bureaucracy puts vulnerable people in peril.

“We’re not totally innocent in this, but some of the processes they’ve implemented have put some of the patients at risk and the agencies at risk,” said Linda Davis, owner of Premium Select Home Care, which serves about 100 Medicaid recipients in the District.

About two dozen licensed home health-care agencies contract with the District to serve about 3,000 people in the program. The District created the program in 1999, six years after Congress allowed Medicaid money to cover basic home help that doesn’t require a nurse. People must make less than $2,130 a month to qualify. The District funds 30 percent of the program and the federal government covers the rest.

The popular program reached its cap in 2011, creating a waiting list of more than 1,000 people. That triggered a paperwork backlog for contract case managers, who must get doctors to approve the level of care for each client every year. If they file it late or at the last minute, the District might not have time to authorize the continued care before the federal deadline, District officials said. That’s when the system ends the aid.

Legal guidance

Many of those people cut from the program got help from a handful of organizations that provide free legal services to seniors and people with disabilities. Attorneys for University Legal Services said they have taken up 30 to 40 termination cases in the past year and half. In some of those cases, people returned home from a brief hospital stay to discover that their aide and spot in the program were gone.

McWain-Gray is one of the people that University Legal Services helped.

She was still wearing a neck brace from a recent spinal surgery when she called for help in January 2012.

McWain-Gray said she remembers trying to change her diaper in bed in the evenings. She could not sit up. Widowed with no children, she says she had no one to turn to.

McWain-Gray’s attorney requested a hearing in front of an administrative judge, arguing that the District broke the law by not giving the woman enough notice of the pending termination.

Ending the Medicaid benefits of people who are eligible for them is illegal, said her attorney, Marjorie Rifkin. Within a few days of ending services, the District placed McWain-Gray back in the program and restored the 16 hours of daily home care.

Some clients receive vague notices that they will soon lose their home care. Others never get a notice. The practice is forcing people into nursing homes or leaving them to fend for themselves, Rifkin said. That led her and four other attorneys to write a complaint to D.C. Mayor Vincent C. Gray (D) in February 2012, threatening to sue the city if it didn’t make changes.

“We urge you to intervene to stop this practice and remediate the harm to those who need EPD Waiver services and supports to remain in their homes and the community,” read the complaint from the National Senior Citizens Law Center and University Legal Services.

Various outcomes

Attorneys who work for the city responded a few months later, saying that more than 300 people might have been improperly terminated from the program. Staff from Health Care Finance tracked down those people and found that 133 had died and 37 had entered nursing homes or other long-term care facilities, according to the letter. An additional 95 placed on the basic state Medicaid plan said they were satisfied with it. The District also took 69 people back into the waiver program at their request, the letter said.

The bureaucratic mess almost left one Northeast Washington man without anyone to care for his 89-year-old mother, who has dementia. Dwayne Hughes, 52, said he reached out for legal help after the woman’s home health-care agency kept calling to say that the District wasn’t paying. In November, Legal Counsel for the Elderly got Hughes’s mother back into the program.

“I made a commitment that I would take care of my mom. I’m going to keep her in the home as long as possible,” said Hughes, who arranged for 12 hours of daily care for his mother while he works evenings at a telecommunications company in McLean. “This is a good program, but there needs to be more oversight.”

Health Care Finance officials point to steps the District has taken to prevent people from losing the waiver benefits. District staff held mandatory training sessions for all case managers last year, focusing on the need to complete annual recertification on time, Iscandari said. Health Care Finance also began mailing notices to participants 90 days and 30 days ahead of their yearly recertification deadline. And all 1,397 people on the waiting list have received notice of available slots, she said.

The 30-day termination notices, which tell participants that they can request a hearing, help ensure that everyone who is eligible for home aid will continue to get it, Iscandari said. The program does not track how many people are terminated, when or why.

More to be done

Attorneys and advocates for Medicaid recipients say the District hasn’t done enough. People who don’t request a hearing can still lose their services because of the District’s administrative errors, Rifkin said.

“We don’t think the problem has been solved,” she said. “They’ve failed to manage the process.”