Cover Story

Homebodies

Enfeebled by age and unwilling to burden their families, many seniors waste away in nursing homes. But with millions of baby boomers beginning to peer into the twilight of their own lives, the search for nursing home alternatives is registering on the political radar screen. Many states, as well as the federal government, are wrestling with the issue of how best to accommodate an aging population-and programs based in home, faith, and community are gaining attention

Issue: "Aging in place," March 31, 2001

in Florida-Susan Roberts can't keep her mind on her project. She's supposed to be gluing brightly colored bits of construction paper onto a cardboard Mardi Gras mask, but she'd rather talk about the cab ride she once took. "As soon as I got in the car, a verse came on the radio: Blessed-isn't that a great word, blessed?-is he that dieth in the Lord, for he shall rest from his labors. I heard that verse, and I thought, 'Praise God!' I haven't worried about dying since." The little lady in the pink cardigan sweater doesn't look like she would need to worry about dying soon, in any case. But her looks-and her sheer enthusiasm-are deceiving. Mrs. Roberts is 92 years old and suffers from the dementia that so often comes with old age. Though she says her cab ride happened two weeks ago, it might well have been 20 years ago. She can talk easily about her grandfather, a bishop in the African Methodist Episcopal Church, but the details of the here-and-now can seem tantalizingly out of reach. She does know that it's almost time to go home, however. It's nearly 3:00 on a sunny Friday afternoon, which means her grandson will soon pick her up from Share the Care, an adult daycare center in downtown Orlando. She'll spend the weekend the same place she spends each night: in her own home and her own bed. She feels blessed and her family does too. But many elderly Americans, and their families, do not feel blessed. When Washington lawmakers a generation ago decided that nursing homes were the option of choice for dealing with elderly Americans, the federal Medicare program began tying the hands of would-be family caregivers. The vast majority of Medicare dollars flowed into institutional settings, with little help available for families whose schedules might allow them to care for a loved one at home. Medicare reimbursement schedules pushed many of the elderly into nursing homes while kinder and less expensive home-based alternatives languished. Problems became evident to all during the 1990s. With the lax oversight typical of federal programs, Medicare costs began to spiral out of control while service declined. Huge national nursing home chains began to crop up, built by highly leveraged financing and based on the assumption that Uncle Sam would continue to write the checks indefinitely. With government paying almost all the bills while asking almost no questions, some unscrupulous operators reduced staffing and expertise, choosing to rely on unskilled nurses' aides making barely minimum wage. Complaints starting coming as some families, already feeling guilty over their choice to institutionalize a loved one, grew alarmed by what they saw on the occasional visit: soiled sheets, bedsores, forgotten meals, improper medications. A rash of lawsuits ensued, and nursing homes saw the cost of liability insurance soar. At the same time, Congress took a closer look at the industry and found a widespread pattern of abuse. One company overcharged by $1.3 billion. Another billed Uncle Sam for luxury condos, a corporate jet, and a staff retreat-in Italy. In 1997 lawmakers responded by capping the daily Medicare reimbursement per client-just what the chains had feared most. With the federal trough running dry, nursing home operators watched as huge profits turned into devastating losses. By 2000, five of the seven largest national chains had declared bankruptcy. Florida, with its grayer-than-average population, was hardest hit by the nursing home shakeout. Entire chains threatened to pull out of the state, citing the high cost of doing business there. Individual homes that were unable to afford liability insurance shut their doors, forcing families to scramble to find new beds for their loved ones. State officials last year scrambled, too, trying to contain a growing crisis that threatened Florida's reputation as the nation's number-one place to retire. That's when Florida intensified the search for alternatives-and some of them actually seem to be working. "I do think we're on the cutting edge," said Gema G. Hernandez, the secretary of the state Department of Elder Affairs. She ticks off a long list of initiatives, from certified elder-ready towns like Dunedin to a managed long-term care program that can oversee all of a senior's needs, from the first home-delivered meal to the final moment of full-time nursing care. Through it all, Ms. Hernandez explains, the goal is to allow people to "age in place" for as long as possible before being institutionalized. "Aging in place simply means the right place for the right person at the right time. Most of the time, the right place is home and community. Less than 3 percent of the time is the right place a nursing home." In the remaining 97 percent of cases, families can provide better, more loving care than an institution can-and they do it for a fraction of the price. According to experts, few seniors really need the kind of round-the-clock medical attention that a nursing home can provide at an average cost, in Florida, of $37,000 a year. Too often, families choose to institutionalize an older parent because they simply don't see any other options. Seniors may not need constant medical attention, but they often do need constant attention-something that working families cannot provide while still holding down two jobs. Community-based programs like the one Mrs. Roberts attends are now the darlings of state planners. "We want to provide the best quality of life to people," said Mary Ellen Ort-Marvin, director of the Community Based Long Term Care program at the Christian Service Center, where Mrs. Roberts spends her days. "But I think that the message really has been striking home since we've had all these limited resources and all these quality issues in nursing homes. The fact that we can save money and avoid those nursing home issues by providing community-based services has really gotten us a lot of attention and support." That support is not limited to the Christian Service Center. Secretary Hernandez says the state is looking to promote "the whole gamut of services that allow seniors to remain in the community: adult day care, respite services, home meal delivery, transportation services. Everything you need that will support you and your caregiver so you don't have to look for another alternative." Thanks to a law allowing limited Medicaid waivers, states like Florida now have some flexibility in redirecting federal dollars from nursing home care to community-based alternatives. Still, Washington needs to grant much more autonomy to the states in caring for their seniors, according to Ms. Hernandez. She cites transportation as an example: Many seniors can't drive, yet still need to get to the grocery store, the doctor's office, and church. Lack of mobility is one of the issues that can lead to premature institutionalization, so the state can actually save money by helping seniors get around. Though there's some federal money available for such programs, it comes from so many different sources-HUD, Energy, Transportation-and with so many different strings that states find it difficult to tailor programs to suit their own needs. But Ms. Hernandez admits that Washington isn't the only culprit; her hands are tied by home-grown laws, as well. In administering funds for Community Care for the Elderly, the secretary cannot contract with faith-based organizations, according to the Florida code. That's something that has to change, she says. "This is an important quality of life issue. If I have a home-delivered meal provider who shares my same belief system, by the very fact that I can talk to that person about my spiritual life, that meal becomes an added value to my life. If I have a personal care aide who also shares my belief system, even as she's bathing me, we may be talking about spiritual issues, and that adds value to my life. The law has to change ... I want people to recognize that spiritual life is critical-just as critical as bathing someone and changing their diapers." Orlando's Christian Service Center shows just how crucial the faith-based community can be to the success of statewide initiatives on aging. Ms. Ort-Marvin says her program is unique in Florida, in that it does receive government funds despite its religious affiliation. CSC is funded through the Alzheimer's Respite Initiative, a separate statewide program that does not have the religious restrictions found in the Community Care for the Elderly law. That allows the Center's eldercare program to meet about 60 percent of its $1 million annual budget with government funding. In return, the state of Florida gets a lean, professionally managed program that saves millions of tax dollars each year. CSC's eldercare program uses that $1 million to serve 500 families in Central Florida at an average cost of just $2,000 each: one full year of community care costs the same as just 20 days in a nursing home. If each of those families had to institutionalize a loved one at an average cost of $37,000, the total bill would approach $19 million a year. "I think our model here has shown that the faith-based community has really stepped in to help the elder population," Ms. Ort-Marvin said. "What do we want to do in a faith-based organization? We want to provide care to people. We want to be there to support them in their old age. It's a ministry to us and to our supporters. But to the government it's a social service, and that's how they fund it. That allows us the opportunity to do what we know is important." The eldercare budget, she emphasizes, is separate from CSC programs such as the homeless ministry that are more explicitly evangelistic. Still, the success of the respite care program is due in large part to its faith-based nature. Ms. Ort-Marvin speaks in churches several times a month, raising private funds to supplement the tax dollars she receives, and enlisting volunteers from 300 supporting churches. That volunteering allows the family members of Alzheimer's patients to get away for a few crucial hours of freedom. One such patient, Betty Garrett, knew she wanted to grow old at home. She had watched a sister languish in a nursing home for 12 years, a victim of the Alzheimer's that ran in her family. Every night, she and her husband, Jim, would drive to the home to feed and sit with the woman who no longer recognized them. Finally, Mr. Garrett recalled, his wife "just burst out crying. She knew it was happening to her, and she didn't want to end up there." Mrs. Garrett was only 59 years old when she started double-paying bills and getting lost on the way to the grocery store. A few years later, at the Mayo Clinic, the Garretts got the diagnosis they'd been dreading: Alzheimer's. Jim Garrett, older by two years, tried to care for his wife at home, but he had troubles of his own. His vision was failing rapidly, rendering him legally blind. "In the beginning, I was trying to do it all myself," he recalled. "I used to read to her for hours at a time until my voice would get hoarse ... I couldn't leave her alone, so I had to take her everywhere with me. One day I was trying to put her in the car and she slipped off the seat. I grabbed her so she wouldn't fall all the way, and it took three vertebrae out of my back. "I would've had to put her in a nursing home, definitely. I was right at the point where I'd have to put her in, and I didn't want to do that." Instead, a daughter moved back home to help out, and the Garretts discovered adult daycare at the Christian Service Center. "It was a wonderful relief," Mr. Garrett said, his voice quavering. "They took such good care of her. She would come home at night, and she'd be better after being around people. It was good for her, as well as for us." "Mom," as he calls her, went to the center several days a week for three or four years. Then in October, her condition worsened. "It was taking several people to take her to the bathroom at daycare, and they couldn't do that, you know, so they said we'd have to bring her home." Even now, CSC sends a nurse to the house every Thursday afternoon, allowing Mr. Garrett to get away for a few hours of precious downtime. "Twenty-four hours a day is a long time," he said. "She's in the final stages now. She's totally dependent. We have to feed her and do all the work. But praise the Lord, I know we take care of her better than they could in the nursing home." Mr. Garrett says the weekly respite care is just enough help to allow him and his daughter to keep Mrs. Garrett at home. They'd like to keep her there until death comes. They know it's what she'd want. And she's not the only one. Aging baby boomers worried about their own mortality will likely force governments at all levels to re-think their nursing home bias, affording more people the opportunity to grow old and die at home, where they feel most comfortable. Whatever fancy name the government may give it, eldercare reform is bound to generate plenty of heat in the coming years. "Aging in place would be our own choice for ourselves," said Ms. Ort-Marvin, explaining why the movement is likely to catch on. "Elders are just us, only older. Where do you want to get old? Where do you want to die? We all kind of want to die in our sleep, in our own bed."

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