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State Offers Alternative for Seniors Needing Care But Waiver Program Hobbled by Red Tape
At 82, after several falls and trips to the hospital, Marie Whalen found herself in a nursing home, put there by relatives from Harford County, Md., who no longer could care for her. "It was a horrible experience," said Whalen, a widow with no children and only minimal income. During her three-month stay, she had a changing set of roommates -- one with bed sores who screamed when aides put her in her wheelchair, one with dementia whose words were a stream of vulgarities, and one who moaned almost constantly. The staff changed frequently, too, and sometimes they were absent when residents roamed the halls late at night, Whalen said. "To me, she was getting weaker and not as strong as she should have been," said Whalen's 78-year-old sister, Elizabeth McMillen. "I was afraid she was going downhill." With the state's help, McMillen moved her sister to an assisted living home on the fringes of Ellicott City in Howard County. Whalen now lives in a spacious suburban home with four other elderly women and caretakers who help them bathe and dress, dispense medications and even prepare their favorite dinners. "I'm very happy here," Whalen said. "From the first day, I've loved it." Throughout Maryland, there are families eager for the solution Whalen and her sister found. A year-old state program aims to bring community-based services to thousands of low-income elderly who don't need or want to spend their last years in nursing homes. The so-called waiver program is run under a federal dispensation of the requirement that frail, low-income seniors be cared for in nursing homes. Although the waiver option has been available to states for 20 years, only now is Maryland trying to provide services to more residents. But cumbersome bureaucracy and too few care providers have hobbled the Medicaid-funded program, which had enrolled just 860 of the 2,397 people who had applied, as of last week. Applicants in 2001 typically waited months to receive services, and 80 died while waiting to get into the program, according to state figures. Even as the program tries to get established, advocates worry state budget woes could slow its progress. "That would disappoint many, many people and frustrate those of us who've waited for a long time for something like this to happen in Maryland," said John Kenney, chief of Aging and Disability Services in Montgomery County. Early results from federally funded research indicate there's little difference in seniors' health if they're treated in smaller residential settings rather than large nursing homes. Community-based services generally are cheaper, costing from $2,000 to $4,000 a month, compared with nursing homes, which range from $3,000 to $5,000 a month. They carry the popular vote, too. "For years and years and years, people have been begging for alternatives," said Ilene Rosenthal, chief of the housing division for the Maryland Department on Aging. "From a public policy standpoint, it makes sense." But the state's Department of Health and Mental Hygiene was reluctant to make the program bigger because officials feared it would prove too popular and strain the budget. "It's creating a new level of service," said John Folkemer, who directs the agency's Office of Planning, Development and Finance. "You would get a lot of people who were formerly cared for by family members in the community. Now they're relying on government." Nevertheless, Maryland lawmakers in 1999 unanimously passed legislation expanding community-based services for seniors on Medicaid. The program, which may enroll no more than 5,000 people by mid-2004, is expected to cost about $86 million in new spending over five years, with the state and federal governments contributing equally. But so many county and state agencies are involved in evaluating applicants and care providers that enrollees face a three- to six-month wait. "I will tell you, when this process first started off, it was the most frustrating damn thing I've dealt with," said Robert Molder, the program's director for Anne Arundel County. "Guidance from the state changed daily." In Prince George's County, gearing up for the program has been so arduous that just eight of 267 applicants were enrolled as of mid-November. "The staff is trying to learn the program and implement it at the same time," said Theresa M. Grant, director of Prince George's Aging Services Division. Some families find that loved ones, even if they can no longer care for themselves, don't meet the program's strict medical requirements. Parrish Kenny, a registered nurse in Severna Park, was eager to enroll her 83-year-old grandfather, who wanders at night, has dementia, cannot feed or bathe himself and needs help taking his medication. But state officials said he didn't qualify for skilled nursing care. "I was devastated," Kenny said. The state has had to scramble to enroll nearly 600 care providers, and some applicants have been unable to receive services because providers weren't available, said the Department of Aging's Rosenthal. Some care providers complain of the program's bureaucratic labyrinth or of reimbursements that they contend are too low. Others who participate find the state can be slow to pay. Deborah I. Chang, deputy secretary for health care financing, said the state is taking extra steps to enroll community-based providers and provide training. "We want to improve the program," she said. "We want to make it easier." In years to come, Rosenthal said, the program is expected to permanently reduce costly nursing home admissions. But Chang isn't certain the effort can expand while the state faces a $150 million shortfall in its Medicaid program. "People have asked me whether we're saving money. The waiver costs us," Chang said. "There's a lot of need out there." State Sen. Paula C. Hollinger (D-Baltimore County), a chief supporter of the program, points out that demand will only sharpen as the baby-boom generation pushes the population of 60-plus seniors to nearly 1.4 million, or 23 percent of Maryland's population, by 2020. "How we prepare ourselves now is going to give us a much better idea of how we do in the future," she said. In the meantime, there are the fortunate few, such as 76-year-old Ruthie Leukhardt, whose cousin John Burns helped her move into an assisted living home in eastern Montgomery County in 2000. The program pays for her stay, along with adult day care three days a week. "It's saving the government money, and it's giving better care," Burns said. "Her self-confidence has come up. She's less dependent." Leukhardt, a retired telephone operator from the District, agrees. "I'm a leader, oh, yes," she said. "The people are lovely here. This is much nicer."
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