A two-year study of long-term care for the aging has focused on 14 facets of the problem, rated them according to importance and feasibility for improvement and concluded that the No. 1 issue is case management: the process of determining need and the best way to fill it.
A hundred, give or take one or two, experts met recently at the University Hilton for the "Staying at Home" conference that was a part of the study. Their mission was to discuss feasibility of implementation and to vote for the four items that they consider not only important but possible to achieve.
In addition to case management, the experts chose care-givers supports, meaning community help to those who care for the frail elderly; home-care incentives, ways to make it cost-effective to keep the aged at home; and levels of care, a balanced continuum between independent living and a skilled nursing facility.
Raymond M. Steinberg, who holds a doctorate in social work, was director of the project conducted by the Institute for Policy and Program Development of USC's Andrus Gerontology Center. He emphasized that the study covered facets of the long-term care system, "not just a single program but a look at the system as a whole. We needed to see how things connect or do not connect."
The result was the selection of 14 possible goals, what Steinberg called "14 'shoulds' " that ranged from equal access to long-term care services to how to educate physicians about the need--or absence of need--for institutionalized care.
Steinberg explained the matter of case management, not surprisingly deemed the No. 1 goal by the professionals, mostly social workers, who ranked the issues.
"Case management involves service brokers, someone to assess the need and to indicate what resources are available to the client," he said. "Someone needs to recommend change as the situation changes, for example to have home-delivered meals for the client when needed but to not have that service go on forever.
"Some multiservice centers claim they are doing case management, but they do not hire a skilled person, a nurse or a social worker, because that person would be paid more than the center director. There is a growing number of private managers, some of them good, some bad.
"There is the matter of labeling: senile, Alzheimer's disease--Alzheimer's is the flavor of the month. Yet no one asks if the person has ever had a CAT (brain) scan or if he or she can prepare meals. You can't just match a need and a resource without digging deeper."
Steinberg, who emphasized that the study entailed the efforts of many professionals, also spoke of the group's second choice for attention, support for those caring for the frail elderly at home. These include tax concessions, reimbursement or subsidy for home-care costs and respite arrangements to relieve the care givers.
"A General Accounting Office study in Cleveland showed that 80% of the help for the frail elderly came from the family," Steinberg said. "That's 80% of help, not 80% of cases. We ought to nurture that informal care giving. There are a lot of resources, but they are being underutilized. In some cases people have called a community services agency and the agency itself didn't know what respite meant."
Third choice of the professionals for implementation was home-care incentives, governmental and private health insurance policies to provide financial incentives--as opposed to the present disincentives--for caring for the elderly at home.
"We need to revise the payment policies of insurance, which do not cover long-term care or home care," Steinberg said. "Employer associations and labor groups are now looking at their coverage (with this in mind).
"In Palo Alto the Veterans Administration made an offer to care givers that if they would care for the person at home they could put the person back in the hospital to provide respite to the care giver. Some VA people thought the care givers would abuse the plan, but surprisingly they didn't use it a lot.
"It is not easy to change this on a local level. We need to get the state to apply for more waivers for Medicare, especially since Congress is convinced that home care is less costly."
The fourth goal selected as feasible for implementation was levels of care, a goal that calls for more gradations between placement in a skilled nursing facility and being at home. Board and care homes, a step between independent living and a skilled nursing facility, may need to be defined in special categories according to the special needs of clients, entailing additional reimbursement from government, insurance or consumers, the report said.
"Theoretically, we have an intermediate facility between skilled nursing and home care," Steinberg said, "but the state reimburses for home care or a board-and-care facility at a much lower rate. So there are 38,000 skilled nursing beds in Los Angeles County and only 633 intermediate care beds.
"In looking at board-and-care homes we had thought that people would be evicted for medical reasons, but we found it was more often likely to be behavior problems. . . . It is hard to find board and care for those with a moderate income or who are mentally impaired.
Board and Care Unclear
"In the study, half of our informants thought of board and care as an institutionalized setting; the other half did not. It is unclear what board and care is or should be."
The levels of care issue also involves the matter of case management, in the sense that appropriate care--how much, how little--must be decided by someone. Steinberg, who is involved in a federal study of public guardianship, explained.
"Anybody who is hard to handle is referred to the County Public Guardian, which provides conservatorship," he said. "Nine of 10 cases are not appropriate for conservatorship, which is a serious thing that involves losing one's civil rights. California probate law is to avoid it as much as possible.
"If nine of 10 cases are not appropriate for the Public Guardian, why are they referred? The labels are not true. 'Senility' can be due to medication or lack of nutrition. One big gap we found is that a high percentage of people can care for themselves--except for managing their financial resources.
Financial Service Needed
"Customarily, needs are health and social services. We might see that a new service needs to be created: financial. In one instance a woman was about to lose her home because she hadn't paid a sewer tax; you can defer property taxes but not services charges. The woman was referred for conservatorship, which made her and her family so angry that they refused other community help that was available to them.
"Street people also are a concern. Having an address where they can get a Social Security or welfare check is a problem, or if they get the Social Security check they are ripped off before the month is over. We need a way to hold the money and give it out weekly; that would have to be voluntary, of course.
"Sometimes aid is cut off because people can't handle the (required) forms. One woman kept being turned down because she insisted she had property that her husband had sold off 40 years ago."
Promise of Implementation
Steinberg stressed that, although only four issues were chosen in the final vote--largely because of their promise for implementation--each of the others was also important. They include:
--Equitable access to a minimum of long-term care services. Suggestions here involve uniformity of resources across geographic lines, inequities based on ethnicity and opportunities for exchange of information between cities and regions.
--Financial management to conserve assets, handle routine money transactions and mobilize resources for care. The study found many cases of older people who coped independently in most ways except for the management of funds.
--Designation of a planning organization to weigh options and coordinate a long-term care system.
--Local and state advocacy organizations. Steinberg sees a move to such groups "because the active elderly are being faced with having to care for frail spouses. I get the impression they have been effective in reform for long-term care facilities; regulating nursing homes is an easier one to advocate (than providing long-term care at home). But it (advocacy) is growing and I see positive change."
--Recruitment of volunteers to work with frail elders. The study recommended seeking family surrogates from the religious sector, employee retirement associations and membership organizations to which the frail elder had belonged.
--A change in DRG (diagnostically related groups) Medicare payments that often result in premature discharge of patients from acute care. The recommendation calls for sufficient time for discharge planning to avoid institutionalization in instances where home care is feasible.
--An increase in basic services for the frail elderly: home chore, protective services, adult day care and mental health services.
--Improvements in quality and regulated standards of care.
--A comprehensive network for information and referrals.
--Education and incentives for physicians regarding diagnosis, placement and rehabilitation of elders. Despite suggestions of programs through medical journals and professional organizations, Nancy Corby of the Long Beach Community Hospital Geriatric Program had this to say: "The best way to educate the physician is by educating the families of the elderly as to what is decent care and to have them demand it."
Large and Real Problems
Although acknowledging that the problems are large and real, many of the professionals involved in the study, which was funded by the John Randolph and Dora Haynes Foundation, concurred with the assessment of Estelle Tuvman of Scan Health Plan, Long Beach, who formerly worked with the Gray Panthers.
"Five years ago at the Gray Panthers I'd be asked by the media to find a cute old lady who roller-skated at Venice," Tuvman said. "It has changed so enormously in the last two to three years. . . . The aging are getting attention as consumers and as people in the media."