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District residents say cuts in Medicaid home care hours leave them vulnerable

Claire Taylor, left, visits her grandmother Leah Graham, 108, who has been receiving 24-hour care in her home in Southeast Washington through a Medicaid program. Recently her family learned that the hours are slated to be cut, and they worry this could endanger Graham. (Tara Bahrampour/The Washington Post)

For decades, Leah Graham was a pillar in her neighborhood in Southeast Washington, tending her vegetable garden, helping sick neighbors, baking her signature strawberry cake with icing made of confectioners’ sugar and strawberry Kool-Aid.

Now 108, Graham has dementia and is too frail to leave her bed, but neighbors still stop by, as do her granddaughter and great-grandson, who live 10 minutes away. She became bedridden at 104 but has been able to stay in the house she’s lived in for more than 40 years because she has been eligible to have a caregiver in her home 24 hours a day through the Elderly and Persons with Physical Disabilities (EPD) Medicaid Waiver program.

But in December, Graham was among several hundred District residents who learned that their personal care aide (PCA) hours were slated to be cut after the city hired a company that started doing reviews using a new assessment tool and a new case-management system.

“These were rolled out all at the same time, without any kind of pilot project,” said Tina Nelson, manager at Legal Counsel for the Elderly (LCE), an affiliate of AARP that provides free legal and social-work services to low-income D.C. residents 60 and older.

When they heard last summer about the planned changes, LCE and other advocacy groups sent letters expressing concern that the new system had not been tested and that its reassessments of eligibility could put vulnerable people at risk.

Their fears came true, Nelson said, adding, “It has resulted in numerous applicants having PCA services drastically reduced or being found ineligible after reassessment.”

Studies show that older people prefer to stay in their homes for as long as possible, and federal and local government policies have increasingly moved in that direction . Most EPD recipients are 65 and older, and eligibility for the services is reassessed annually.

Although the city’s Department of Health Care Finance (DHCF) is supposed to inform clients of changes to their eligibility, many were not told about the changes or learned about them only indirectly, Nelson said.

Legal Counsel for the Elderly and its Office of the D.C. Long-Term Care Ombudsman Program are handling close to 200 cases; a few have also been referred to District law firms that help LCE with pro bono work. But many people may not know they can get help, Nelson said, adding that clients are supposed to receive formal notice about any proposed changes and given a chance to appeal them before a judge.

After Graham was reassessed in October, her granddaughter, Claire Taylor, was at a recertification hearing when a DHCF representative happened to mention that Graham’s home care hours were going to be reduced to 19 a day. Taylor said she received a formal letter about it two days later, after a judge at the hearing asked the representative why she hadn’t received one. Seven weeks later, when Taylor returned for a continuance of the original hearing, the representative said the hours would be cut further, to 17.

“It was a shock,” said Taylor, an accountant, sitting last week at her grandmother’s bedside. She said Graham needs round-the-clock care because she does not sleep regular hours and is prone to choking. “We’ve had problems recently making sure she’s turned on a regular basis or she could develop sores,” she said.

‘A lot of our plaintiffs have died waiting to get out of the nursing home’

Melisa Byrd, Medicaid director for the DHCF, said the new system was introduced to make assessments more objective and bring them in line with standards used in other jurisdictions. It also allows the data to be fully automated and easier to query, she said.

So far, of about 3,400 District residents who receive EPD waivers, roughly half have been re­assessed. Of those, 47.5 percent kept their existing benefits or were recommended for an increase or decrease of less than two hours a day. An additional 36.5 percent were recommended for a decrease of two or more hours a day, and 16 percent were recommended for a daily increase of two or more hours, Byrd said.

No one should have hours cut before receiving formal written notice from the department, along with an explanation of how to appeal, Byrd said. Recipients have the opportunity to provide letters from doctors, family members and caregivers, and in the cases of people whose hours have been reduced by more than four a day, “we’ve instructed our vendor to have a nurse do another review before the change is finalized,” Byrd said.

Some confusion may have arisen when case managers saw that a reduction in hours had been recommended and mentioned it to clients before they got the formal notice, Byrd said.

“We’re looking into it — is it a system problem? Do we need to better educate assessors?” she said.

She added that there was no mandate to reduce hours. “We want these beneficiaries to get the service.”

But recipients and their families are worried. Harriet Hirshorn’s 85-year-old mother, Anne Sue Hirshorn, who has dementia, lives in her Glover Park house with 24-hour care. When she was left alone once during a 15-minute lapse between caregiver shifts, she walked to a department store and became confused while trying to buy Christmas presents. She was arrested, then hospitalized with a heart problem and took several months to recover, her daughter said.

“We’ve been told by doctors and care providers not to even leave her alone for a short time, because to us that’s basically playing ‘mother roulette,’ ” Hirshorn said.

Her mother, an art historian and artist, is comforted by being in her own home, and she still paints and draws. But her most recent assessment recommended that her hours be cut to eight per day, and then they were further reduced to four, Hirshorn said.

Daniela de la Piedra, a senior attorney with LCE who is representing Hirshorn’s mother, said the latest assessment “does not take the whole person into account. Sure she can eat, but does the person know that she can’t just eat candy all day?”

Taylor, too, worries that a lapse in care could mean her grandmother would have to move to a nursing home, meaning she and her son would be unable to visit as frequently and that Graham would lose her connection to her neighbors and the comforts of home.

Talking about it, Taylor’s eyes welled up.

“I’m not going to take her out of what she knows,” she sobbed. She leaned down to kiss her grandmother’s halo of fuzzy hair.

“She was 104 before she ever needed anything. Anything. And to make us risk her care is just inhumane to me.”