Kevin Mayfield stopped by his childhood home to attend to his unofficial second job as his 83-year-old mother’s case manager.
Mayfield arrived straight from his Department of Public Works job, wearing a yellow reflective jacket with DC SNOW embroidered on the front. These days, when he’s not supervising snow teams or driving a street sweeper, he’s trying to prevent his bedridden mother from being dropped from the D.C. Medicaid program that pays for the care she receives at home.
Mayfield, who lives in Maryland with his daughter, comes to visit his mother every day.
“He takes good care of me,” Delores Mayfield says in a soft voice. “Good care of me.”
The elder Mayfield, who worked as a pharmacy assistant at Howard University Hospital, retired in 2001. She now spends her days in her house in Woodridge, where she raised her family and has lived for half a century. The view from her bedroom window, looking down the hill on her block, is filled with trees. Her fingernails are painted bright red, courtesy of a recent visit from one of her granddaughters.
Mayfield is at risk of losing this serene retirement she spent a lifetime working toward. She is one of more than 100 D.C. residents who, under a rule change, no longer have incomes low enough to qualify for D.C.’s Medicaid program for the elderly and physically disabled, known as the EPD program.
The program is designed to keep seniors in their homes and out of nursing facilities. It pays home-care aides for services such as meal preparation, bathing, dressing, and toileting.
With her retirement income just under $2,400 per month, Delores Mayfield has long been able to obtain coverage through the D.C. Medicaid home-care program. But it’s now limited to people with incomes under $2,200 per month, and people like Mayfield are being cut off from the program entirely.
For those caught in this rule change, options are limited. They can pay for home care out of pocket, which can cost hundreds of dollars per day, a financial impossibility for someone as close to the income cut-off as Mayfield. They can try to prove they are “medically needy,” a complex income-based classification that is hard to qualify for, offers temporary coverage, and expects beneficiaries to live on less than $650 each month.
For those in the vast economic middle—seniors who are neither poor enough for Medicaid nor anywhere close to wealthy enough to afford home care—the remaining option is a nursing facility. There, each resident may have only an eight-by-10 foot section of a room shared with a stranger, separated by a curtain. Nursing facilities are expensive, well over $100,000 annually per person on average, but Medicaid favors them, paying the portion of a facility’s bill that exceeds a patient’s income—even if the person is not poor. (Medicaid is different from Medicare, which covers many healthcare costs for seniors but does not pay for long-term care.)
At 83, Mayfield, a diabetic who has lost strength in her legs and suffered a hip fracture, may have many years ahead of her.
“They’re recertifying you for the last 10 years, and this come up,” says Kevin Mayfield. “My mom’s bedridden, can’t do nothing for herself. They take the aides away? Come on.”
Families like the Mayfields find themselves navigating a prohibitively expensive system that is only getting costlier as home-care workers—who are struggling to get by too—are organizing for higher wages and better benefits.
Mayfield, who applied for temporary coverage under the “medically needy” process and is awaiting a decision from the city, doesn’t know what the family will do if Medicaid drops his mother.
“I might have to quit my job. Somebody will have to take care of my mom. I can’t leave her here by herself. I would have to do something,” he says.
This rule cutting off Medicaid home-care coverage for some D.C. seniors was supposed to be in place from the time the program was created in 2008.
Instead, the District government was determining eligibility for the program only by considering financial assets—things like savings accounts and stocks. Federal rules, however, require that the program also consider an applicant’s monthly income, which typically comes from Social Security and retirement checks. If a person’s monthly total is more than $2,200, that person is ineligible.
D.C. wasn’t applying any income cut-off at all. Even someone with a high income could obtain Medicaid coverage.
The public was generally unaware of this. The advertised guidelines from the District Department of Health Care Finance, which administers D.C.’s Medicaid program, did include an income requirement. The government’s internal processes just didn’t apply it.
As a result, “most of those who were over the income standard never applied for benefits,” says Wayne Turnage, director of DHCF, “probably on the assumption that their application would be denied because of excessive earnings.”
Those over the income cap who did obtain benefits probably didn’t realize there was a cap, or they thought they might somehow still qualify, Turnage says.
He says the department has found 106 participants in the program who are over the income limit. About 80 percent of them have monthly incomes within $1,000 of the threshold. Their terminations from the program are spread out between the second half of 2016 and the first half of this year, depending on when each person’s annual renewal is scheduled.
“When you’re overqualified by just a small amount, it just seems really unfair to me,” says Rhonda, who did not want her family’s full names published. “I don’t understand why they can’t just grandfather the people who already have this service in.”
Rhonda has been helping her aunt Eva, an 82-year-old Northeast resident who is over income under the rule change and is set to lose the care she receives six hours per day, six days a week. She has a hearing this week.
Services like meal preparation, bathing, and dressing have helped Eva remain safely in the home her mother purchased in 1961 as her health has worsened. She’s had one hip replacement, and her doctor says she must have a second. She gets around unsteadily and is afraid of falling when she is by herself. Eva has never been married and does not have children of her own.
Her niece says she heard about a service where seniors can pay $10 per hour for help with errands and household tasks. Even at half the cost of a licensed home-care worker, that adds up.
“I’m thinking, oh gosh, that’s going to be a hardship,” Rhonda says.
Eva says she will not leave her home. “I really feel comfortable in my home,” she says. “I know my surroundings, the neighbors.” Her doctor’s office is in the neighborhood too.
Other members of the family have spent time in nursing facilities, Rhonda says, where they observed unclean conditions and rodent infestations. When she visited, she recalls, “everybody just seemed like they were kind of drugged up, quite honestly.”
Nursing facilities screen applicants by their ability to pay, and the best facilities are generally out of reach for Medicaid recipients, because Medicaid pays relatively low rates. In lower-cost facilities, patients usually share a room with a stranger, a curtain around the bed providing their only privacy. Eighty square feet per person is all that is required in the District.
People can live in environments like this for decades with health conditions that are debilitating but not fatal.
The number of nursing facilities in the District has shrunk to 18 with the closure of The Washington Home last year, and some have long waiting lists. Without enough facilities in the city to meet the need, the District’s Medicaid program currently pays for 480 D.C. residents to live in facilities in Maryland and Virginia, away from home and relatives.
Seniors who are over the income limit for the Medicaid home-care program can join or stay on the program temporarily by proving they are “medically needy.” In the District, that means showing that they only have $642.83 to live on each month after medical expenses. Stretching $642.83 far enough to pay for housing, food, and every other non-medical expense is, in itself, not easy in a city whose cost of living is among the highest in the nation.
“It is nearly impossible for most people,” says Rebekah Mason, a staff attorney with Legal Counsel for the Elderly, which provides free legal services to low-income D.C. residents 60 and older.
For Delores Mayfield, her living expenses include maintaining her home. “The house is old,” Kevin Mayfield says. “Mom’s had this house for the longest time.”
At her income level, she can be deemed medically needy for six months if she spends about $11,000 of her own money on medical costs. Bills that Medicaid has paid don’t count. She has dental bills she has been paying down. Her son doesn’t know whether that’ll be enough, but he applied. He rates their chances at 50-50. If it works out, Mayfield can prolong her coverage for up to six months.
Mason says that after a family has received a termination notice, navigating the hearing process and trying to remain on the program is “incredibly complicated”—and not just for seniors.
“We’re still learning it, and we breathe this,” she says.
Despite being legally blind, Leah Graham still cooked for herself at age 104. “And it still tasted awesome,” says Claire Taylor, Graham’s 50-year-old granddaughter. “Better than mine.”
Two years ago, an infection landed Graham in the hospital. When she left the house that day, she walked down the 18 steps leading from her front door to the street. Unable to keep up the marching exercises she did daily at home, and without physical therapy in the hospital, Graham’s muscles atrophied during the eight-day stay, her granddaughter says.
“She walked into the hospital. She did not walk out,” Taylor says.
Now 106 years old, Graham is confined to her bed in a house on a quiet block in Hillcrest. She moved there after she retired 40 years ago to live with her daughter, her son-in-law, and her grandchildren in their home. Graham’s daughter, who was her only child, died in 2012.
Graham has lost her mobility, her vision, and some of her hearing, but her doctor tells her that her heart is strong, and her vitality is evident. On a recent afternoon, lying in bed, she answered her granddaughter with a cheerful “I sure do” more than once when a mere “yes” would’ve done.
For a time, with the family unable to afford full-time home care, Graham’s other granddaughter Karen Taylor helped take care of her, but she couldn’t do things like lift her grandmother. “We don’t know what we’re doing, and they do,” Claire Taylor says of her grandmother’s aides.
Graham’s teacher pension and Social Security total almost $2,400 per month, putting her over the $2,200 cap for the D.C. Medicaid home-care program.
After her family slogged through the application process, having incurred more than $10,000 in out-of-pocket medical costs for a period, Graham was able to qualify as medically needy for the D.C. Medicaid home-care program last year. Her six months ends this spring. Now they have to do it again.
Medicaid will not contribute to her bills when she is between coverage. It won’t take Graham more than a few weeks to spend $10,000 more on home care, and she doesn’t need much money to live on after medical expenses—Graham lives with her son-in-law in the house he owns. But the home-care company bills every two weeks, so the bill that puts her over $10,000 could bring her far past $10,000. As she waits for D.C. to process her application, the expenses could pile up every hour. The months it took the family to obtain coverage the first time haven’t inspired confidence for a quick turnaround from the city.
New York and Illinois allow their residents to buy into Medicaid and receive care. Instead of incurring enough medical bills to qualify as medically needy, they may simply pay that sum in cash, directly to the state. D.C. Medicaid does not allow this.
“I cannot start this process all over again,” says Claire Taylor, who is managing her grandmother’s case.
Taylor is determined to do right by the grandmother who helped raise her, to keep her with family in the home she has known for so long.
“You hear things that happen in nursing homes,” Taylor says. “They may happen, they may not happen. They won’t happen to her.”
Besides navigating the Medicaid system and mounds of paperwork on her grandmother’s behalf, Taylor has an 8-year-old son and a job as an accountant with Prince George’s County Public Schools.
Taylor’s accounting experience has been useful. She has a mind for rules like the ones she is wading through. She’s well-organized, maintaining a thick binder—having outgrown a smaller binder, and before that just a folder—of all her grandmother’s records.
The federal government told D.C. as early as 2009 that its failure to apply an income cap ran afoul of Medicaid’s restrictions. It wasn’t until 2016 that the Department of Health Care Finance finalized a rule to make the eligibility standards official.
In those years in between, it does not appear that the District government was in a rush to implement the stricter rules.
Officials were concerned about what would happen to the seniors who would be cut off. In an email last October, Claudia Schlosberg, DHCF’s senior deputy director, outlined the predicament to Mike Nardone, director of programs for the elderly and disabled in the Medicaid division of the federal Centers for Medicare and Medicaid Services.
“We are very anxious to try to find a workable solution as we have people now who are significantly disabled and living in the community who are being forced into nursing homes,” Schlosberg wrote to Nardone.
Schlosberg noted that this could be an opportunity for Medicaid to reduce its “institutional bias,” referring to the ways that Medicaid tends to favor placement in institutions instead of care at home.
For instance, people moving to nursing facilities can use their projected future bills to qualify for Medicaid coverage from the start. In contrast, to qualify as medically needy for home care, people must rack up steep bills, then apply for coverage after.
Additionally, the cost of rent, food, and utilities are wrapped up in the fees of a nursing facility. It’s all one big medical cost, so Medicaid winds up paying for housing and food at a facility. In their own homes, seniors’ groceries and rent or mortgage payments are not medical expenses.
The laws that govern Medicaid can be convoluted, and that does leave some room for creativity.
Federal overseers proposed a new path to Medicaid coverage in the District that would be tenable within federal law. Legally, D.C. could make anyone eligible for home care if their income is below the amount Medicaid pays for the cheapest nursing facility in the District. This proposal would open up Medicaid home-care coverage to residents with an annual income under $84,700, a significant portion of the city’s population. But D.C. deemed it cost-prohibitive.
Meanwhile, the cost of long-term care, already immense, is growing.
The average amount that Medicaid pays for a nursing facility in D.C. is about $116,000 annually per person, which is lower than what people pay if they have their own funds.
Medicaid currently pays $20.20 per hour in the District for a home-care aide, up from $16.32 in 2013. Six hours of home care six days per week, the amount Eva receives, translates to about $38,000 a year. She could save Medicaid substantially by staying out of a nursing facility—not to mention the immeasurable benefit of being able to stay in her own home.
For those who require 24-hour care, the $20.20 hourly rate translates to almost $177,000 per year.
Michael Thompson became a home-health aide in D.C. after working in nursing facilities, where he says he was responsible for as many as 10 patients at a time during his shifts, too many for one person to adequately care for.
“It was always a big load,” Thompson says.
LaSonya Weaver, a home-health aide who has been providing care to District residents in their homes since 2001, also used to work in a nursing facility. “I had too many people,” she says. Patients must be turned frequently to prevent bed sores, and Weaver says workers weren’t able to keep up.
In one-on-one settings, aides can devote more attention to their clients. “We love to take care of people,” says Weaver. “We love to see people light up when we come through the door.” She and Thompson both say home-care workers occasionally buy their clients supplies and toiletries out of their own pockets.
In an expensive city, they too are struggling to get by. The high cost of home care does not mean workers are well paid. Since 2014, home-health aides in the District have filed four class-action lawsuits accusing their employers—various private agencies—of unpaid wages and overtime violations.
Home-care workers are also organizing nationally for higher pay and better benefits. In 2015, the federal Department of Labor required that home-care agencies pay their employees the minimum wage and overtime. Previously, they were exempt under rules enacted during a time when institutional care was the norm and home care was commonly done on an informal basis.
One of the nation’s fastest-growing fields, home-care work has become increasingly skilled and professionalized. In 2012, the District Department of Health finalized new regulations for home-health aides in the city. They undergo training that includes nursing tasks, such as giving enemas and oxygen therapy. They can change colostomy bags and clean around feeding tubes.
Though the Medicaid home-care program is for non-medical services, like bathing, toileting, and meal preparation, the D.C. program requires the workers to be licensed home-health aides in most cases.
Some of them feel they’ve become medical professionals who are nevertheless treated like maids, making the $13.95 per hour required of D.C. contractors, with minimal benefits and few opportunities for advancement.
“To do maid-type work—no. That’s not what we trained for,” says Thompson. “I’m trained to make sure that you are healthy.”
“We need to be treated like the hospitals treat their workers,” says Weaver.
Their compensation and treatment suggest their work is not highly valued. But it is vital. After the FBI raided and shut down a group of home-care agencies in D.C. in 2014 for Medicaid fraud, home-care aides had to continue working, unpaid.
Last year when buses and Metro shut down due to a blizzard, Thompson says he walked from his home near the Silver Spring border in Northwest to reach his client in Southwest, through the snow.
“I know he was in that bed by himself,” Thompson says.
On a sunny Saturday earlier this month, family and friends of the late Gladys Lewis gathered for a memorial service at Plymouth Congregational United Church of Christ on North Capitol Street.
Lewis grew up in segregated Loudoun County, Virginia, marrying at age 18 and having eight children, one of whom died in infancy. “She overcame one heck of a lot of obstacles,” says Walter Bryant, her 76-year-old son.
Lewis began her career as a maid. “Back in the ’30s, that was the only job a black woman could get,” her son says, “and she was determined she was going to go beyond that. And she did.”
Lewis eventually worked to become a successful fashion buyer for upscale department stores. After her husband passed away, a second marriage brought her to D.C.
Late in life, she developed Alzheimer’s disease. Under the D.C. Medicaid home-care program, she received the care she needed to remain at home. In February, she passed away at age 97.
Changing long-familiar surroundings can harm any frail senior, particularly an Alzheimer’s patient. “To take her out of the house suddenly, to put her in a nursing home, we thought would be ill-advised,” Bryant says.
At her memorial service, the program described her as a “trailblazer, political activist, change agent,” honoring her civil rights activism. Her son told a story of a time when his mother called him to come home from college to help integrate a movie theater.
She also blazed a trail in the District’s Medicaid program. According to Legal Counsel for the Elderly, she was the first beneficiary of the elderly home-care program to get 24-hour care, which her doctor recommended. She set a precedent that other seniors in the city benefitted from. Attorney Rebekah Mason says the D.C. government had been operating under a belief that 16 hours per day was the most the program could provide.
“We were only hearing rumors. We could find no policy in writing, nothing in the regulations, nothing that said 16 was the max,” Mason says.
Near the end of Lewis’ memorial service, her daughter Janet, one of five children still living, got up to speak. She asked if any of the home-care workers who aided her mother through the last phase of her life were present, and if they would stand. In one of the furthest-back pews, the one who made it to the service stood up, and the sanctuary applauded.
“We couldn’t have asked for anyone better,” the daughter said. “They loved mom. I mean, they loved mom. I’m just so grateful.”
Low-income D.C. seniors can contact Legal Counsel for the Elderly on its hotline, 202-434-2120.