A National Long-term Care Program for the United States; A Caring Vision
Each institutional provider, eg, community agency, nursing home, home care agency, or social service organization, would negotiate a global operating budget with the local LTC agency. The budget would be based on past expenditures, financial and clinical performance, utilization, and projected changes in services, wages, and other related factors. Alternatively, institutional providers could contract to provide comprehensive LTC services (or integrated LTC and acute care services) on a capitated basis. No part of the operating budget or capitation fee could be used for expansion, profit, marketing, or major capital purchases or leases. Capital expenditures for new, expanded, or updated LTC facilities and programs would be allocated based on explicit health planning goals separately from operating budgets by the state LTC agency. For-profit providers would be paid a fixed return on existing equity, and new for-profit investment would be proscribed. As Physicians for a National Health program has previously proposed,31 physicians could be paid on a fee-for-service basis, or receive salaries from institutional providers. Physicians and other providers would be prohibited from referring patients to facilities or services in which they held a proprietary interest. Providers participating in the public program would be required to accept the public payments as payment in full and would not be allowed to charge patients directly for any covered service. Federal and state budget allocations for LTC services would be separate from those for acute care, as in Canada.
Coverage would extend to anyone, regardless of age or income, needing assistance with one or more activity of daily living (ADL) or instrumental activity of daily living (IADL). (ADLs are basic self-maintenance activities [ie, bathing, dressing, going to the toilet, getting outside, walking, transferring from bed to chair, or eating]; IADLs relate to a person's ability to be independent [cooking, cleaning, shopping, taking medications, doing laundry, making telephone calls, or managing money].) High-risk patients not strictly meeting this definition would be eligible for services needed to prevent worsening disability and subsequent costly institutional care. Local panels would have the flexibility, within their defined budgets, to authorize a wide range of services, taking into account such social factors as the availability of informal care.
When case management or care co- ordination is needed, the local agencies would assume these tasks or delegate them to appropriate providers, eg, capitated providers offering comprehensive services. Not all those needing LTC require case management.32 Case managers and care coordinators would work with the client, family, and other care givers to assess adequacy and appropriateness of services, promote efficiency, and respond to changing needs. Progressive decline in function characterizes many chronic illnesses, while full recovery is possible in others. Thus, change in need is a nearly universal aspect of LTC and mandates frequent reevaluation and flexibility. In all cases, programs should encourage independence and minimize professional intrusion into daily life.
A universal need-based entitlement to LTC would replace the current irrational patchwork of public and private programs, each with its own eligibility criteria, by age, cause of disability, and income. All income groups would be covered without means testing, which is cumbersome and costly to administer , may increase costs in the long run by causing people to postpone needed care, creates a stigma against recipients, and narrows the base of political support for the program.28 There are scant data on how to set simple eligibility standards that ensure coverage for all in need, while excluding those for whom LTC services are a luxury rather than a necessity. We have chosen an inclusive general criterion (one ADL or IADL) and have left fine tuning to local agencies able to individualize decisions.
In all, approximately 3.9% of the population (9.3 million people in 1985) would be eligible for covered LTC services. An estimated 3.6% (7.6 million persons) of the total noninstitutionalized population need assistance with ADLs or IADLs,15 including only .8% of those aged 65 to 69 years but 46% of those aged 85 years and over.15 Another 1.5 million people are in nursing homes and residential care facilities,17 and 200,000 people are in psychiatric and long-stay hospitals.33
UTILIZATION AND COST CONTROLS
Removing financial barriers to LTC will increase demand for formal services. Long-term care insurance could legitimately result in a 20% increase in nursing home utilization and a 50% to 100% increase in use of community and home health care by the elderly.9,24 Increases in utilization might be expected to level off after about 3 years, as occurred in Saskatchewan's LTC program.27
Our program would be financed entirely by tax revenues, without premiums, deductibles, copayments, or co-insurance. However, people permanently residing in residential care would use part of their basic Social Security or Supplemental Security Income to contribute to "hotel" costs. Although other cost-sharing methods raise revenues and discourage utilization, these regressive financing mechanisms disproportionately burden the poor and the sick and reduce the use of preventive and other essential services.28,34,35
Although we eschew financial barriers to care, utilization controls are essential since many LTC services (eg, "meals on wheels," homemakers) are desirable to people without disabilities. Several states' Medicaid programs have demonstrated that screening and utilization controls can both control costs and improve care by preventing unnecessary institutionalization, coordinating services, and ensuring the use of the most appropriate care.35,36
The local LTC agencies, each with a defined catchment area and budget, would apportion the finite resources for LTC among those in need. These local agencies, serving as the single point of entry for LTC service authorization, would work with clients and care givers to select and coordinate appropriate services from a comprehensive listing of providers. This approach relies on enforceable overall budgetary ceilings to contain costs. The local agencies would have strong incentives to support more cost-effective informal providers and community-based services that might forestall institutionalization.
INNOVATION IN THE PROVISION OF LTC
Broad changes in the provision of LTC are essential.37 The current system is fragmented among many acute care in- patient, ambulatory, and LTC providers. This fragmentation creates higher costs through the duplication of bureaucracy and the failure to achieve administrative economies of scale. More important, the lack of coordination compromises the quality of care. A unified financing system would foster the integration, or at least coordination, of acute care and LTC - an essential step, since virtually everyone needing LTC also needs acute care. Financing the full continuum of care from a common source might also enable a more rational targeting of resources, with emphasis on preventive services, early intervention, vigorous rehabilitation, and restorative care. Expanded community-based services would allow earlier discharge for many hospitalized patients and might forestall hospitalization for many others.
The goal of the national LTC program would be to support and assist informal caregivers, not to replace them. However, informal care givers should not be expected to undertake an overwhelming burden of care and would be offered predictable respite care and other supportive services, such as counseling, training, and support groups.
The program would encourage the provision of LTC by multidisciplinary teams of social workers, nurses, therapists, physicians, attendants, transportation workers, and other providers. Collegial relationships and teamwork should be the rule, with leadership from nurses and social workers as well as from an expanded cadre of well-trained geriatricians, rather than the traditional hierarchical relationships between physicians and nonphysicians.38
The availability of capitated funding would foster organizations providing consolidated and comprehensive LTC and acute care services. Two LTC demonstrations that have employed such a model are the social health maintenance organizations and the On Lok Senior Health Service in San Francisco, Calif. Both provide a full range of acute, ambulatory, and LTC services with a capitated financing system.39,40
Although such coordinated care may be optimal,41 individual providers could continue to operate on a contractual or fee-for-service basis. In some cases, family members or other informal caregivers could be approved as providers. However, in these situations responsibility for case management and care coordination would ordinarily rest with the local LTC agency.
Innovation would be supported by earmarked extra funding that the state LTC boards would award to local agencies offering the most promising proposals. While each local agency would be required to provide a standard set of ser- vices with uniform eligibility criteria and reimbursement rates, this supplemental funding would encourage state and local agencies to develop services beyond the basic level and to seek and reward innovation. This is particularly important for improving services to different age groups, disability categories, and cultural and racial minorities.
Finally, missteps are inevitable in the course of the major reform we envision. Funding for ongoing evaluation is essential to rapidly disclose problems and allow their timely correction. Particular attention should be focused on key policy questions where current expert opinion has not been fully tested by rigorous research. In what situations does case management improve outcomes or efficiency? What organizational framework best ensures appropriate attention to both medical and social needs? What, if any, preventive measures minimize deterioration in mental or physical function? Are categories such as ADLs and IADLs optimal for targeting care?
QUALITY OF CARE
No other segment of the health care system has as many documented quality of care problems as the nursing home industry , and concern is growing about the quality of home care.42-44 As many as one third of all nursing homes are operating below the minimum federal standards.45 Monitoring the quality of LTC has been hindered by variability in state regulatory programs and the lack of well-validated regulatory standards and procedures.46