Those most in need of nursing home care are least likely to find it
BRAIT, SUSAN
Those most in need of nursing home care are least likely to find it BY SUSAN BRAIT stringent regulations, and nursing home quality improved to a significant degree. Today, the issue is not quality...
...Other homes will take total-care patients, but only when hospital social workers put the pressure on...
...Though many already have elderly, ill parents, though most will grow old some day, perhaps because we fear our own infirmity and mortality we struggle to hold the problem far from view...
...Government must spend first to save money on unnecessary hospitalization and nursing home care," says Stanley Brody, Professor of Physical Medicine and Rehabilitation at the Hospital of the University of Pennsylvania...
...last year their combined income from Social Security was $491 a month...
...But if we're really committed to developing these community-based services, then it's going to take a long period of time...
...The officially preferred choice is return to the home...
...But Congress refuses even to fund enough demonstration projects to assess accurately the results of good alternative care...
...Yet state-funded alternative services have barely been able to get off the ground...
...Supply is not keeping pace with demand...
...People go simply because government has given them no choice...
...For him to enter a nursing home as a private patient in New Jersey would cost the Fosters at least $1,250 a month— between $15,000 and $20,000 a year...
...Fearing the time when Foster will be required to leave the hospital, his social worker calls every possible home every day, inquiring about vacancies...
...We have the National Council of Retired Persons, the National Citizens' Coalition for Nursing Home Reform, and the National Council on Aging...
...in June 1977 there were 1,819, and in July 1980 there were 2,600...
...States have their own methods for sidestepping welfare responsibilities...
...Sometimes I think we see the very old as a ravenous horde that's about to sweep down the hills and take us over," says Helen Smits...
...Today, the issue is not quality but quantity...
...But though all of these groups fight for better health care for the elderly, most of their lobbying efforts have been ineffective...
...She found it extremely easy...
...Because he is paralyzed, caring for him takes more time, and therefore is more expensive than caring for other longterm patients...
...The states get the rest...
...So many states, like New Jersey, limit the growth of the nursing home industry simply by paying profitless prices to profit-making companies...
...The state will only reimburse the nursing home for salaries at minimum wage...
...A lot of people are concerned," says Smits, "that if we put a lot of extra dollars into alternative services, new people, who were managing without services, will come along to gobble them up...
...Yet the nursing home that takes Daniel Berke receives the same amount of money for his care as it would for Clifford Foster's...
...fragile hands wrap carefully around a warm cup of coffee...
...Among those who find beds, he added, is "a large proportion of people who have been shown, in survey after survey, not to need nursing home care at all...
...Foster, seventy-three, has had a mild stroke and a bladder operation...
...Public health officials estimate one-third the nation's nursing home patients could move back to the community...
...Planning experts believe family care in a comfortable and familiar setting, with the aid of a visiting nurse or home-maker (if one can be found), is more humane and beneficial than institutional care...
...Inadequate facilities and those far away have been eliminated...
...Progress toward establishing alternative care," says David Wagner, another New Jersey health commissioner, "in this state, as in every other state, has been very limited because there are no means of financing these programs...
...By 1900 there were three million people sixty-five and over who accounted for 4 per cent of the population...
...So the Fosters' three daughters have begun to look for a home...
...Unlike Foster, he does not require labor-intensive, around-the-clock attention...
...Once such a patient has been identified, he or she becomes the responsibility of the state...
...Yet almost nothing has been done to develop them...
...Only then will they have the money saved from Medicaid payments to spend on experimental alternative care...
...This woman could never attach feeding tubes, change catheters, and prevent bedsores by lifting and rolling a paralyzed man...
...But New Jersey has one of the lowest nursing home bed ratios in the nation: thirty-two for every thousand persons aged sixty-five or more, rather than the more usual fifty to sixty...
...Today, 11 per cent of the population, one out of every nine Americans, is sixty-five or older...
...No one said they didn't have any beds or asked me to go through a three- or six-month period first of paying for him privately...
...And the Medicaid budget is constantly broke (this year legislators have already threatened to cut back reimbursements...
...We can get some limited experimental money from' foundations and the Federal Government, but there is no Federal program that guarantees financing for other kinds of living arrangements...
...One century ago, there were about 1.2 million people sixty-five or older who accounted for 3 per cent of the population...
...But even at those institutions, Foster's name will go to the very bottom of the eligibility lists...
...No one knows or can even begin to estimate what adequate long-term care would cost the state today and tomorrow...
...That leaves profit-making institutions willing to admit a mix of private and public patients...
...Through Medicare the Federal Government regulates and pays for acute treatment and one hundred days of post-hospital convalescent care...
...Congress is determined not to spend more than it already does on health care for the elderly," says Joyce Leanse, associate director for the National Council on Aging, "so they have locked themselves into supporting what is...
...And there will be no such Federal programs soon...
...As our elderly population grows numerically and proportionally, it also grows older and older...
...Non-profit, church-sponsored homes also must be eliminated because Clifford Foster has none of the requisite religious affiliations...
...States realize that if beds are not available, patients can not be transferred to nursing homes...
...What little savings they once had were used up long ago...
...The issue is money...
...Alternative services have expanded with glacial slowness," says Vladeck, who is also the author of a new book called Unloving Care: The Nursing Home Tragedy, "largely because available public funds are used up by an ever-increasing supply of nursing homes...
...If you were an administrator operating a profit-making corporation required to admit a certain number of Medicaid patients to keep your operating license, which patient would you choose...
...Many factors severely limit their options...
...His wife had access to the same institutions as Clifford Foster's children...
...Faced with this kind of demographic reality, public officials tend to turn and bolt...
...In New Jersey, there is much talk of...
...And society allows government to hedge because most people prefer to avoid the issue...
...One of the ways they lose money, for example, is on state payments for nurses' aides...
...A church home can make up those deficits by fundraising in the community, but a profit-making home can't do that...
...The oldest segment of those over sixty-five has increased and will continue to increase much more rapidly than the older population as a whole...
...Daniel Berke had his last and most disabling stroke at fifty-four and, after an unsuccessful attempt at rehabilitation, his doctors agreed that he should go to a nursing home...
...He can walk, though with difficulty...
...Every time they pay more than minimum wage they lose money...
...When the state pays costs like that, for-profit groups can't come into the system and the supply of state Medicaid beds stays inadequate...
...When the Government framed the 1965 Medicare and Medicaid laws, it looked at the complete requirements for adequate long-term care and decided to give as much of the problem as possible to the states...
...says Dr...
...The Feds try to shift as many of their health care costs as possible over onto the states, and the states try to shift as many of their health care costs as possible over onto the Feds...
...Because there is such a severe shortage of long-term facilities, the state encourages elderly patients and their families to look for alternative kinds of care...
...After five years of budget-squeezing and costly planning, New Jersey has established only twelve medical daycare centers statewide...
...By the year 2000,44 per cent of our elderly will be more than seventy-five years old...
...Patients either pay their own bills of, when they can't afford it (as is almost always the case), hospitals absorb the losses...
...Nor, in fact, could her daughters do these things: They have neither the skills nor the stamina to care for an incapacitated man twenty-four hours a day, seven days a week...
...New Jersey is a case in point: In September 1975, when the state began counting patients waiting to get into nursing homes, there were 1,340...
...Like most families, the Fosters want a clean place where good care is available within reasonable visiting distance...
...Even in states where reimbursements are adequate overall, they often do not reflect individual patient costs...
...To develop long-term care options, Vladeck theorizes, states must hold down the supply of nursing home beds...
...Instead it finances study commission after study commission, exploring theory after theory...
...Since these services are performed by semiskilled nurses' aides, most states reimburse for them at a lower rate than that for services to someone who needs a licensed practical or registered nurse...
...An estimated one-third of the patients could live in the community— but they do not have the choice "New nursing home beds primarily tend to get filled not from hospital backlogs but rather from a permanent but marginal demand among the unhospitalized aged," Bruce Vladeck, a New Jersey assistant commissioner for health planning, said recently in The New York Times...
...On one of my regional visits recently, I talked with a non-profit, church-owned nursing home in Washington State...
...Narrow wrists protrude from a neat cotton dress...
...Some government officials agree: "The problem with any cost reimbursement system is, how realistic is it in terms of cost...
...By the time today's children retire, one out of six Americans will be sixty-five or older...
...Yet one family got help with ease while another is rapidly approaching desperation...
...Other densely populated states (New York, Pennsylvania, California) have similarly long waiting lists, but New Jersey's is one of the longest ..Many factors have contributed to the shortage of nursing home beds in the state: strict quality regulation (which has prevented any New York State-type Moreland Commission scandals), traditionally low state payments (periodically subjected to sudden legislative cutbacks) to a profit-making industry, and a recent two-year building moratorium (to allow for government planning...
...Daniel Berke lives in the same community as Clifford Foster...
...Faced with rapidly growing numbers of old people, public officials tend to turn and bolt Nursing home administrators say they are forced to prefer private patients over public patients to make up for deficits created by inadequate government reimbursements...
...She hopes one will turn up before Medicare stops paying his bills...
...Institutions take them because they are easy, profitable patients...
...Nursing home administrators, required to make a profit to stay in business, say they can only lose money on patients like Foster...
...Helen Smits, former director of the Health Standards and Quality Bureau for the Federal Health Care and Financing Administration...
...For the last eleven years, the Fosters have lived in a mobile home on rented land in Pemberton, New Jersey...
...They say they lose $200,000 to $300,000 a year on payments from the state...
...So we run and hide, ignoring our humanity, choosing to forget that one day soon we will be they...
...Yet the state pays no more for his care than anyone else's...
...They set up and administer their own programs and take responsibility for rate reimbursement, quality control, provision of adequate services, and half the cost...
...Officials believe more day-care centers, more visiting nurses, and more congregate living arrangements would provide humane and less costly support services to the aged...
...In the meantime, his children make their institutional visits, fill out the required forms, plead with their local officials and administrators, and then go home to wait and worry, their father's fate left to the mercy of Federal and state public policy...
...and if patients can not be transferred to state-financed institutions, the state does not have to pay for their care...
...Only then, when other options have been provided, only when the old have somewhere else to go, will improper use of existing services be eliminated...
...It's very difficult for a public official to appear so callous," says Vladeck, "and say, 'Well, we're working to develop these other alternatives, but it's necessarily going to be a slow and painstaking process.' Institution building is hard to do...
...Clifford Foster was a nurseryman and a farmer for most of his working life...
...Even with the severest shortage, though, private patients who can pay their way do get care...
...The issue is not time...
...more probably it will be more expensive, so that even with adequate alternative care there still will be no money for Clifford Foster's nursing home bed...
...If more sheltered housing, with access to prepared meals and emergency medical care, were available, many could live there, independent yet assisted...
...Unfortunately, Mrs...
...Mental and physical ailments requiring long-term care get worse with advancing age...
...For instance, Federal forces pressure doctors to search out and finger elderly patients who no longer need acute hospital care...
...Tiny, frail, and frightened, she sits in one daughter's kitchen and listens to yet another family discussion about her husband, but never says a word...
...but there is a question of allocation of resources...
...When Foster's children made the rounds of their local institutions, they found one that absolutely refused to take patients on tube feedings and catheters...
...Reimbursements by states are least for patients who cost nursing homes the most...
...They need supportive services which now, in most communities, can only be obtained in institutions...
...New Jersey does not pay hospitals for patients waiting for non-existent nursing home beds...
...alternative care...
...I only considered two places," Margaret Berke says, "and the one I preferred took him right away, on Medicaid...
...Nursing homes, such as they are, already cost New Jersey about $250 million a year...
...Almost all of the elderly on nursing home waiting lists are medically indigent—people who can no longer or never could afford to pay forty, fifty, or sixty dollars a day for institutional care...
...Daniel Berke is an easy, inexpensive nursing home patient...
...He never earned much money, but with the help of his wife's wages from a hosiery mill he always managed to support his family and stay solvent...
...This division of responsibility has resulted in various thinly disguised Medicare and Medicaid maximization programs...
...He can feed himself and, with minimum help, dress himself...
...During that same five-year period, the Medicaid nursing home waiting list (made up of indigent elderly screened by the state's own officials) has doubled...
...Clifford Foster must be bathed, dressed, fed, cathe-terized, and passively exercised every day...
...With more medical daycare centers where children could drop their parents on the way to work, and more visiting nurses and homemakers to assist the elderly and their children at home, many could live in some comfort free of institutions...
...Available to Clifford Foster in his community are one information center for senior citizen housing, one day care center with hot lunches and recreation, two nutritional programs, and five community organizations that offer supportive counseling, individually and in groups...
...No one offers to attach Foster's feeding tube, change his catheter, or salve his erupting bedsores...
...The logic is inexorable: The man or woman who needs a nursing home bed most is also the man or woman least likely to find one...
...If there were an infinite amount of money, we could solve the problem...
...States will do as little as possible without financial commitment from the Federal Government...
...The hope is that it would be cheaper...
...Yet, because total-care patients like Foster require extensive, time-consuming attention, invariably they are a nursing home's most expensive charges...
...Then long-term care facilities would have more room for such total-care patients as Clifford Foster...
...Their savings wiped out, his medical insurance gone, his wife, Margaret, applied for Medicaid and began looking for a home...
...Aware of the plight of people like Foster as our population slowly shifts from youth to age, some activist groups concerned with the elderly have organized...
Vol. 45 • November 1981 • No. 11
