A National Long-term Care Program for the United States; A Caring Vision
Reprinted from JAMA. The Journal of the American Medical Association December 4, 1991, Volume 266 Copyright 1991, American Medical Association
The financing and delivery of long-term care (LTC) need substantial reform. Many cannot afford essential services; age restrictions often arbitrarily limit access for the nonelderly, although more than a third of those needing care are under 65 years old; Medicaid, the principal third-party payer for LTC, is biased toward nursing home care and discourages independent living; informal care provided by relatives and friends, the only assistance used by 70% of those needing LTC, is neither supported nor encouraged; and insurance coverage often excludes critically important services that fall outside narrow definitions of medically necessary care. We describe an LTC program designed as an integral component of the national health program advanced by Physicians for a National Health Program. Everyone would be covered for all medically and socially necessary services under a single public plan, federally mandated and funded but administered locally. An LTC payment board in each state would contract directly with providers through a network of local public agencies responsible for eligibility determination and care coordination. Nursing homes, home care agencies, and other institutional providers would be paid a global budget to cover all operating costs and would not bill on a per-patient basis. Alternatively, integrated provider organizations could receive a capitation fee to cover a broad range of LTC and acute care services. Individual practitioners could continue to be paid on a fee-for-service basis or could receive salaries from institutional providers. Support for innovation, training of LTC personnel, and monitoring of the quality of care would be greatly augmented. For-profit providers would be compensated for past investments and phased out. Our program would add between $18 billion and $23.5 billion annually to current spending on LTC. Polls indicate that a majority of Americans want such a program and are willing to pay earmarked taxes to support it. (JAMA. 1991; 266: 3023-3029)
AMERICAN medicine often cures but too rarely cares. Technical sophistication in therapy for acute illnesses coexists with neglect for many of the disabled. New hospitals that lie one-third empty house thousands of chronic-care patients because even the shabbiest nursing homes remain constantly full.1 If the fabric of our acute care is marred by the stain of the uninsured and underinsured, the cloth of our long-term care (LTC) is a threadbare and tattered renmant.
For millions with disabilities, the assistance that would enable independent living is unobtainable. Nursing homes offered as alternatives to the fortunate few with Medicaid or savings are often little more than warehouses. In the home, relatives and friends labor unaided, uncompensated and without respite. Geriatric training is woefully underfunded and carries little prestige.2 Hence, too few physicians are well equipped to address remediable medical problems that contribute to disability ,3,4 while many are called on to assume responsibility for care that has more to do with personal maintenance and hygiene than with more familiar medical terrain; even when they know what should be done, the needed resources are often unavailable. The experts in providing care-nurses, homemakers, social workers, and the like are locked in a hierarchy inappropriate for caring.
With the aging of the population and improved survival of disabled people of all ages, the need for a cogent LTC policy will become even more pressing. Yet policymakers have neglected LTC, for a number of reasons. (1) They have been unwilling to accept LTC as a federal responsibility in an era of cost containment. (2) Meeting routine living needs is a central feature of LTC, with biomedical issues often secondary .Hence, logic dictates that the system emphasize social services, not just medical ones, with social service and nursing personnel rather than physicians often coordinating care - a model that some physicians and policymakers may find threatening.5 And, (3) LTC needs are largely invisible to policymakers because the majority of services for disabled people - of any age - are provided by "informal" (unpaid) care givers, mainly female family members, neighbors, or friends.
Long-term care services are those health, social, housing, transportation, and other supportive services needed by persons with physical, mental, or cognitive limitations sufficient to compromise independent living. The United States has a complicated and overlapping array of financing and service programs for LTC. Financing for LTC is largely independent of financing for acute care and varies depending on whether the need is intermittent or continuous, short or long term, posthospital or unrelated to hospitalization.6-8 Private insurance companies have made only tentative efforts to market LTC insurance and currently insure less than 1% of Americans.9 Insurance for LTC is unaffordable to most who need it and rarely covers all necessary services.10-12 Thus, about half of LTC expenses are paid out-of-pocket, with most of the remainder paid by Medicaid.
Presently the elderly spend 18% of their income for medical care, with out-of-pocket costs rising twice as fast as Social Security payments. Medical expenses cost the average elder 4.5 months of his or her Social Security checks.13 The financial burden for LTC falls most heavily on disabled people without Medicaid coverage.14 To qualify for Medicaid, families must either be destitute or "spend down" their personal funds until they are impoverished. Furthermore, Medicaid is institutionally biased, funding nursing home care far more extensively than home - and community - based services.
Age restrictions on many LTC programs arbitrarily limit access, since about a third of the LTC population is not elderly.9,15,16 Seventy-eight percent of the disabled who receive Social security disability benefits, 14% of nursing home residents, and 34% of the non-institutionalized population reporting limitations in activity due to chronic conditions are under 65 years.17,18 Children constitute 5% of the severely disabled, yet generally are not eligible for LTC under public programs unless they are poor.
Informal services are vital to millions but are neither supported nor encouraged by current programs. More than 70% of those receiving LTC (3.2 million people) rely exclusively on unpaid care givers.19 Almost 22% use both formal and informal care, while 5% use only formal care.19-22 Of the more than 7 million informal care givers, three fourths are women, 35% are themselves over 65 years old, a third are in poor health, 10% have given up paid employment to assume the care of their loved one, and eight of 10 spend at least 4 hours every day providing care.9 Such personal devotion can never be replaced by the assistance of even the kindest of strangers. It must be valued and supported, not supplanted by formal care.
We believe that a government-financed program will be required in order to ensure adequate LTC for most Americans. At most 40%, and perhaps as few as 6%, of older Americans could afford private LTC insurance.9,10,23-25 The average nursing home costs of $20000 to $40 000 per year would bankrupt the majority of Americans within 3 years.26
There is growing recognition that the crisis in LTC, as in acute care, calls for bold and fundamental change. We pro-pose the incorporation of LTC into a publicly funded national health program (NHP). We borrow from the experience in the Canadian provinces of Manitoba and British Columbia,27 where LTC is part of the basic health care entitlement regardless of age or income.27 Case managers and specialists in needs assessment (largely nonphysicians) evaluate the need for LTC and authorize payment for services. This mechanism for directing appropriate services to those in need has allowed broad access to nursing home and community-based services without runaway inflation.
We also incorporate elements from several recent LTC proposals for the United States.9,10,14,24,28-30 Most of these, however, have three important flaws: (1) they focus primarily on the aged and would exclude the 40% to 51% of those who need LTC but are under the age of 65 years15,16; (2) while most would expand Medicare, they would provide a major role for private insurers, perpetuating fragmented and inefficient financing mechanisms; and (3) they exclude nurses and social workers from certifying and prescribing nonmedical LTC services, inappropriately burdening physicians with responsibilities that are often outside their areas of interest and expertise.
Our proposal is designed as a major component of the NHP proposed by Physicians for a National Health Program.31 The NHP would provide universal coverage for preventive, acute, and LTC services for all age groups through a public insurance program, pooling funds in existing public programs with new federal revenues raised through progressive taxation. This approach would improve access to the acute care that could ameliorate much disability, eliminate the costly substitution of acute care for LTC, prevent unnecessary nursing home placements, and provide a genuine safety net, both medical and financial, for people of all ages.GOALS FOR LTC Nine principles are central to our proposal:
- Long-term care should be a right of all Americans, not a commodity available only to the wealthy and the destitute.
- Coverage should be universal, with access to services based on need rather than age, cause of disability, or income.
- Long-term care should provide a continuum of social and medical services aimed at maximizing functional independence.
- Medically and socially oriented LTC should be coordinated with acute inpatient and ambulatory care.
- The program should encourage the development of accessible, efficient, and innovative systems of health care delivery.
- The program should promote high-quality services and appropriate utilization, in the least restrictive environment possible.
- The financial risk should be spread across the entire population using a progressive financing system rather than compounding the misfortune of disability with the specter of financial ruin.
- The importance of "informal" care should be acknowledged, and support, financial and other, should be offered to assist rather than supplant home and community caregivers.
- Consumers should have a range of choices and options for LTC that are culturally appropriate.
Everyone would be covered for all medically and socially necessary services under a single public plan. Home- and community-based benefits would include nursing, therapy services, case management, meals, information and referral, in-home support (homemaker and attendant) services, respite, transportation services, adult day health, social day care, psychiatric day care, hospice, community mental health, and other related services. Residential services would include foster care, board and care, assisted living, and residential care facilities. Institutional care would include nursing homes, chronic care hospitals, and rehabilitation facilities. Drug and alcohol treatment, outpatient rehabilitation, and independent living programs would also be covered. In special circumstances, other services might be covered such as supported employment and training, financial management, legal services, protective services, senior companions, and payment for informal caregivers.
Preventive services would be covered in an effort to minimize avoidable deterioration in physical and mental functioning. The reluctance of some individuals to seek such preventive services requires sensitive outreach programs. Supportive housing environments, though essential for many who are frail and disabled, should be financed separately as part of housing rather than medical programs. Long-term care services would supplement and be integrated with the acute care services pro- vided by the NHP, such as medical, dental, and nursing care; drugs and medical devices; and preventive services.31
The public program, with a single, uniform benefit package, would consolidate all current federal and state pro- grams for LTC. At present, 80 federal programs finance LTC services, including Medicare, Medicaid, the Department of Veterans Affairs, the Older Americans Act, and Title XX Social Services.21 Other public programs finance LTC for the developmentally disabled, the mentally disabled, substance abusers, and crippled children. State disability insurance programs also finance some LTC. This multiplicity of programs leaves enormous gaps in both access and coverage, confuses consumers attempting to gain access to the system, and drives up administrative costs. Furthermore, the system is grossly out of balance, biased toward acute and institutional care and away from community-based health and social services. In contrast, the proposed LTC program would be comprehensive, administratively spare, and "user friendly."
Comprehensive coverage permits use of the most appropriate services and may prevent unnecessary hospitalization or institutional placement. Since most individuals needing LTC prefer to remain at home,24,26 services should pro- mote independent living and support informal caregivers, using nursing homes as the last resort rather than as the primary approach to LTC. Services must be culturally appropriate for special population groups including ethnic, cultural, and religious minorities; the oldest old; individuals who are mentally impaired or developmentally disabled; children; and young adults.
ADMINISTRATIVE STRUCTURE AND ELIGIBILITY FOR CARE
With a federal mandate, each state would set up an LTC system with a state LTC Planning and Payment Board and a network of local public LTC agencies. These local agencies would employ specialized panels of social workers, nurses, therapists, and physicians responsible for assessing individuals' LTC needs, service planning, care coordination, provider certification, and, in some cases, provision of services. These agencies would serve as the entry points to LTC within local communities, certify eligibility for specific services, and assign a case manager when appropriate.
The LTC Planning and Payment Board and the local LTC agencies in each state would pay for the full continuum of covered LTC services. Each state's LTC operating budget would be allocated to the local LTC agencies based on population, the number of elderly and disabled, the economic status of the population, case-mix, and cost of living. Each local LTC agency would apportion the available budget to cover the operating costs of approved providers in its community - although the actual payment apparatus would be centralized in the state's LTC Planning and Payment Board to avoid duplication of administrative functions.