Foreword
This report
arrays evidence and analysis to assist decision makers in the private and
public sectors to address three important and perplexing questions about
long-term care for the increasing number of Americans who are elderly and
frail. These questions are who should pay for long-term care services
through what mechanisms; how to design and deliver these services; and how
to recruit, train, and retain a workforce to deliver long-term care
services.
The Milbank Memorial Fund commissioned Robyn I. Stone to write this
report as a result of meetings of leading trustees and executives of both
nonprofit and investor-owned organizations in long-term care. The Fund and
the American Association of Homes and Services for the Aging (AAHSA)
convened these meetings between 1997 and 1999. AAHSA represents 5,600
nonprofit organizations that provide health care, housing, and services to
more than one million of the nation's elderly. The Fund is an endowed
national foundation that works with decision makers in the public and
private sectors to study and communicate about significant issues in health
policy.
The leaders convened by AAHSA and the Fund deplored the absence of a
synthesis of information and analysis pertinent to developing public and
institutional policy for the future. They welcomed an invitation to Stone to
write such a synthesis because of her achievements as a researcher and
senior public official in long-term care.
Many people reviewed Stone's report in draft. Reviewers included managers
and trustees of organizations that provide long-term care services,
executives of associations and advocacy groups, researchers, and senior
officials in the legislative and executive branches of both state and
federal government as well as those in international organizations. Stone
made many changes in response to questions and suggestions from this diverse
set of reviewers.
Daniel M. Fox
President
Samuel L. Milbank
Chairman
Acknowledgments
The
following persons participated in meetings and/or reviewed this report in
draft. They are listed in the positions they held at the time of their
participation.
Kevin Anderson, Administrator, Mankato Lutheran Home, Mankato, Minn.;
Robert A. Applebaum, Professor of Sociology, Scripps Gerontology Center,
Miami University (Ohio); Robert D. Armitage, Chief Executive Officer and
President, Ebenezer Social Ministries, Shoreview, Minn.; Roger Auerbach,
Administrator, Senior and Disabled Services Division, Oregon Department of
Human Resources; Susan S. Bailis, Co-Chairman and Chief Executive Officer,
SolomontBailis Ventures, LLC, Newton, Mass.; Linda Berglin, Member, Human
Resources Finance Committee, Minnesota Senate; Jo Ivey Boufford, Dean,
Robert F. Wagner Graduate School of Public Service, New York University;
Laurence G. Branch, Professor, Center for the Study of Aging, Duke
University Medical Center, Durham, N.C.; Richard Browdie, Secretary,
Pennsylvania Department of Aging; James Carlson, Executive Director, Oregon
Health Care Association; Reginald Carter, Executive Vice President, Health
Care Association of Michigan; Rick E. Carter, President, Care Providers of
Minnesota; Christine K. Cassel, Professor and Chairman, Department of
Geriatrics and Adult Development, The Mount Sinai Medical Center, New York,
N.Y.; Harriette Chandler, Chair, Joint Health Care Committee, Massachusetts
House of Representatives; Elbert C. Cole, Executive Director and Founder,
Shepherd's Centers of America, Kansas City, Mo.; John J. Costello, Partner,
Byrne, Costello & Pickard, PC, Syracuse, N.Y.; William J. Cox, Great
Falls, Va.; John E. Curley, Jr., Gold River, Calif.; James E. Dewhirst,
President and Chief Executive Officer, The Friendly Home, Rochester, N.Y.;
John A. Diffey, President, The Kendal Corporation, Kennett Square, Pa.;
Connie Evashwic, Center for Health Care Innovation, California State
University; Judith Feder, Professor of Public Policy, Institute for Health
Care Research & Policy, Georgetown University Medical Center; Kathleen
M. Foley, Chief, Pain Service, Department of Neurology, Memorial
Sloan-Kettering Cancer Center, New York, N.Y., and Director, Project on
Death in America, New York, N.Y.; Iris Freeman, Executive Director, Advocacy
Center for Long Term Care, Bloomington, Minn.; Robert B. Friedland,
Director, National Academy on an Aging Society, The Gerontological Society
of America, Washington, D.C.; Susan Gerard, Chair, Health Committee, Arizona
House of Representatives; Ann E. Gillespie, Senior Vice President,
Professional and Organizational Development, American Association of Homes
and Services for the Aging (AAHSA), Washington, D.C.; Sheldon L. Goldberg,
President, AAHSA, then President and Chief Executive Officer, The Jewish
Home and Hospital, New York, N.Y.; Maria Gomez, Assistant Commissioner,
Aging Initiative: Project 2030, Minnesota Department of Human Services;
Sally Goodwin, Executive Director, Oregon Alliance of Senior and Health
Services, Tigard, Ore.; Lee Greenfield, Chair, Health and Human Services
Finance Division, Minnesota House of Representatives; Jennie Chin Hansen,
Executive Director, On Lok Senior Health Services, San Francisco, Calif.;
Mary Harahan, Deputy to the Deputy Assistant Secretary of Disability, Aging,
and Long-term Care Policy, U.S. Department of Health and Human Services;
Steve Hess, President, Florence Home, Omaha, Nebr.; Peter Hicks,
Co-ordinator, Policy Implications of Ageing, Directorate for Education,
Employment, Labour and Social Affairs, Organisation for Economic
Co-operation and Development (OECD), Paris, France; James Introne,
President, Loretto, Syracuse, N.Y.; Alexandre Kalache, Chief, Ageing and
Health Programme, World Health Organization (WHO), Geneva, Switzerland;
Robert L. Kane, Professor, Minnesota Chair in Long-term Care and Aging,
University of Minnesota, School of Public Health; Rosalie Kane, Professor
and Director, National Long-term Care Center, University of Minnesota; Mark
Kator, President, Isabella Geriatric Center, New York, N.Y.; Sandra Kilde,
President and Chief Executive Officer, Michigan Association of Homes and
Services for the Aging; Sheila M. Kiscaden, Ranking Minority Member, Health
and Family Security Committee, Minnesota Senate; Gayle Kvenvold, President
and Chief Executive Officer, Minnesota Health and Housing Alliance; Richard
Ladd, Ladd & Associates, Austin, Tex.; Richard R. Lance, Immediate Past
President, National Benevolent Association, Stanley, Kans.; Paul J.
Lanzikos, President and Chief Executive Officer, Massachusetts Aging
Services Association; Monte J. Levinson, Vice President, Medical Affairs,
Presbyterian Homes, Evanston, Ill.; Phyllis Lissman, Chair, Governor of
Oregon's Commission on Senior Services; Marian Lupu, Executive Director,
Pima Council on Aging, Tucson, Ariz.; Robert L. Mollica, Deputy Director,
National Academy for State Health Policy, Portland, Maine; Tom Moore,
Executive Director, Wisconsin Health Care Association; William Moyer,
Chairman of the Board, Presbyterian Homes, Inc., Lewisburg, Pa.; Andrew W.
Nichols, Member, Health Committee, Arizona House of Representatives; Charles
B. Persell, Chair, Board of Directors Village Center for Care, New York,
N.Y.; Kitty Piercy, Democratic Leader, Oregon House of Representatives;
Steve Proctor, President and Chief Executive Officer, Presbyterian Homes,
Inc., Camp Hill, Pa.; Carol Raphael, Chief Executive Officer, Visiting Nurse
Service of New York; Cindy Resnick, Senior Program Coordinator, The Rural
Health Office, University of Arizona; Robert Restuccia, Executive Director,
Health Care For All, Boston, Mass.; Michael Rodgers, Senior Vice President
for Government Affairs, AAHSA; Alan G. Rosenbloom, Acting President/Chief
Executive Officer, AAHSA; Peggy A. Rosenzweig, Member, Joint Finance
Committee, Wisconsin Senate; John Rother, Director, Legislation and Public
Policy, American Association of Retired Persons, Washington, D.C.; Paul
Rulison, Executive Director, Healthcare Trustees of New York State; Edward
Ryle, Director, Arizona Catholic Conference; Nelson J. Sabatini, Vice
President, Integrated Delivery Systems Operations, University of Maryland
Medical System; Dallas Salisbury, President, Employee Benefit Research
Institute, Washington, D.C.; John Sauer, Executive Director, Wisconsin
Association of Homes and Services for the Aging; William Scanlon, Director,
Health Systems Issues, United States General Accounting Office; Laurie
Sitton, Chair, Services Committee, Oregon Disabilities Commission,
Independent Living Resources; Robert Smedes, Deputy Director, Medical
Services Administration, Michigan Department of Community Health; Jeanette
C. Takamura, Assistant Secretary for Aging, U.S. Department of Health and
Human Services; Dale M. Thompson, Chief Executive Officer, Health
Dimensions, Cambridge, Minn.; Deborah Thomson, Director of Public Policy,
Alzheimer's Association, Cambridge, Mass.; Joan Van Nostrand, Statistician,
National Center for Health Statistics, Hyattsville, Md.; Bruce Vladeck,
Professor of Health Policy and Senior Vice President for Policy, The Mount
Sinai Medical Center, New York, N.Y.; Arthur Y. Webb, Chief Executive
Officer, Village Center for Care, New York, N.Y.; James Weil, Vice
President, Mature Market Group, Metropolitan Life Insurance Company,
Westport, Conn.; Terrie Wetle, Deputy Director, National Institute on Aging,
Bethesda, Md.; and Chuck Wilhelm, Director, Strategic Finance Office,
Wisconsin Department of Health and Family Services.
Introduction
Long-term care has become an
increasingly urgent policy issue. The number of elderly Americans and their
proportion of the nation's population are growing, and Americans who reach
age 65 are living longer. Debate over long-term care by policymakers and
members of the public has ebbed and flowed during the past three decades.
More and more Americans and their leaders face the dilemma of how to meet
the needs of elders with chronic disabilities in the United States.
The mass media have highlighted the cost of long-term care and the need
to plan for it well in advance; the burden of long-term care on individuals,
families, and society; and concerns about the quality of care.
Policymakers are struggling to define the roles of the federal and state
governments and the private sector in financing and delivering care to
elderly people with disabilities.
Policymakers now face three significant questions: (1) Who should pay for
long-term care, and how? (2) How should services to elders with disabilities
and their families be designed, and who should deliver them? (3) How can the
labor force delivering that care be recruited, trained, and maintained? For
long-term care policymakers in the United States, this is the triple knot.
Each of these three strands demands equal attention if sound, appropriate
policy is to be developed.
The question of financing has received periodic attention from federal
policymakers since the early 1970s. The potentially high cost and the lack
of political will, however, have impeded serious debate about access to
long-term care and about the "right" balance between the roles of the public
and private sectors. Except for some federal demonstration initiatives,
policy development related to the delivery of services has occurred
primarily at the state and local levels. At every level, the availability
and quality of the current and future long-term care labor force––both
professional and paraprofessional––have received the least attention of all.
This paper describes the current status of the three key dimensions of
long-term care policy––financing, delivery, and workforce––and identifies some
of the major demographic and policy trends that will affect the demand for,
and supply of, long-term care in the future. First I define long-term care,
including its range of services and settings, the populations that need
care, and the providers who comprise the formal and informal workforce. Next
I review the major issues that affect financing, delivery, and workforce
development. Then this paper identifies trends and projections that will
help shape the long-term care landscape in the twenty-first century.
Finally, I discuss the implications of current and emerging trends for
long-term care financing, delivery, and workforce development.
While recognizing that long-term care is important to people with
disabilities of all ages, this paper focuses on policy for those aged 65 and
older––the group most likely to need services. Although the boundaries
between acute and long-term care have blurred during the last decade, this
paper does not address all the issues related to services required by elders
with chronic illness and disabilities; its examination of managed care and
integration of services, for instance, is limited to their implications for
the development of long-term care policy and delivery systems. This paper
does not offer recommendations or prescriptions for an ideal system. It is
meant instead as a catalyst for dialogue and debate among policymakers,
providers, and consumers at all levels.
Defining Long-Term Health
Care
"Long-term care" is not easy to define. The boundaries
among primary, acute, and long-term care have blurred. Instead of
concentrating on acute care in hospitals as before, our health system is
increasingly devoted to chronic care by various providers in various
settings.
In acute care, physicians, nurses, and insurance companies choose and
deliver treatment. Long-term care concentrates on helping individuals to
function as well as possible; it demands intense involvement by family
members, particularly wives and adult daughters, as providers and
decision-makers. Families are often equal beneficiaries of long-term care
interventions, because the care for the elderly person who is disabled is an
important respite for the family caregiver (Stone and Kemper, 1989).
Long-term care encompasses a broad range of help with daily activities
that chronically disabled individuals need for a prolonged period of time.
These primarily low-tech services are designed to minimize, rehabilitate, or
compensate for loss of independent physical or mental functioning. The
services include assistance with basic activities of daily living (ADLs),
such as bathing, dressing, eating, or other personal care. Services may also
help with instrumental activities of daily living (IADLs), including
household chores like meal preparation and cleaning; life management such as
shopping, money management, and medication management; and transportation.
The services include hands-on and stand-by or supervisory human assistance;
assistive devices such as canes and walkers; and technology such as
computerized medication reminders and emergency alert systems that warn
family members and others when an elder with a disability fails to respond.
They also include home modifications like building ramps and the
installation of grab bars and door handles that are easy to use.
Relationship between Acute and Long-term
Care
Long-term care needs emerge from chronic medical
conditions that occur at birth or during developmental stages, such as
arthritis, diabetes, dementia, cerebral palsy, and prolonged mental illness,
or that result from accidents that cause conditions like traumatic brain
injury and paraplegia. Long-term care is not merely an extension of acute
care. Because it continues at length and mainly involves low-tech supportive
services, it becomes an integral part of the life of the elder with a
disability (Kane et al., 1998).
People who need long-term care also require primary care and acute care
when they are sick, but these temporary, episodic services focus on curing
an illness or restoring an individual to a previous state of better health.
Feder and Lambrew (1996) found that among the five million Medicare
beneficiaries with substantial long-term care needs, as measured by
limitations in three or more ADLs, average Medicare expenditures in 1993
were $8,960 compared with $2,835 for beneficiaries without substantial
long-term care needs. Fifty-one percent of the expenditures were for
inpatient hospital care, 28 percent for physician and outpatient visits, and
21 percent for skilled nursing facility and home health care. The
predominant strategy in long-term care is to integrate treatment and living
for elders with functional disabilities––not to undervalue health care for
those getting long-term care, but to incorporate health care into the
context of the functions of daily life (Kane et al., 1998).
One reason for the blurred boundaries between long-term care and various
stages of medical care-acute, post-acute, and subacute––is the confounding of
settings with services. (Post-acute care is care directly after a hospital
intervention; subacute refers to a vague treatment modality that may bypass
hospitals altogether or that focuses on longer-term rehabilitation,
ventilation care, and the like.) More and more acute care and high-tech
rehabilitation formerly provided in hospitals is being provided in
nonhospital settings traditionally used for long-term care, such as skilled
nursing facilities, and private homes. It is difficult to know where
medically oriented care stops and long-term care begins. Should medical
interventions such as intravenous drug therapy, ventilator assistance, and
wound care that are delivered in a nursing facility, residential care
facility, or the home be considered acute care, subacute care, or long-term
care? Should medication management for elders with chronic disabilities,
including the administration of injections and the monitoring of adverse
drug interactions, be considered long-term care or ongoing medical care?
Hospitals still provide long-term care for some patients; as Kane et al.
(1998) have noted, perhaps they should do so more often.
Fragmented funding adds to the confusion. Medicaid is the primary public
payer for long-term care, particularly in nursing homes, and Medicare is the
major payer for acute care. Because services follow funding, a given
category has tended to be defined by the reimbursement mechanism rather than
by the goals of the care, the skills it requires, or the characteristics of
the recipients.
The Role of Residence in Long-Term
Care
In long-term care, unlike acute care, housing conditions
are as essential as services. The place where people live, including the
physical and social environment, can greatly enhance or impede a person's
functional disability, independence, and quality of life. Nursing home
policies explicitly recognize the residential needs of the long-term care
population by including room and board, as well as care, in their costs. The
importance of housing is less clear in home- and community-based policies.
Housing conditions are often overlooked when care is delivered in an elder's
own residence, although there is increasing recognition that home
modifications may help keep individuals in the community and reduce their
need for formal services. But while housing is crucial to the development of
residential care, there is tremendous variation in the extent to which
services are integrated with housing needs.
In defining long-term care, then, several points are worth
emphasizing:
- Long-term care is primarily concerned with maintaining or improving
the ability of elderly people with disabilities to function as
independently as possible for as long as possible.
- Long-term care also encompasses social and environmental needs and is
therefore broader than the medical model that dominates acute care.
- Long-term care is primarily low-tech, although it has become more
complicated as elderly persons with complex medical needs are discharged
to, or remain in, traditional long-term care settings, including their own
homes.
- Services and housing are both essential to the development of
long-term care policy and systems.
Care Settings
Long-term care
is provided in a range of settings, depending on the recipient's needs and
preferences, the availability of informal support, and the source of
reimbursement. Much gerontological literature refers to a continuum of care,
identifying the nursing home as the most restrictive and one's own home as
the least restrictive setting in the spectrum. The literature also stresses
the appropriateness of a setting, assuming that a mechanism exists for
judiciously matching the individual and setting. The "continuum" and
"appropriateness" paradigms have been challenged (Kane et al., 1998; Stone,
1999) by those who argue that services can be delivered in any one of many
settings, depending on a constellation of individual, familial, and policy
factors. One's own home can be as restrictive as a nursing home, if an
individual is homebound and is not getting the services that would
facilitate some independence. In theory, a home-like atmosphere can be
created in any environment, including the nursing home. Furthermore,
"appropriateness" is subjective and should not be invoked to prevent
individuals from making their own choices, which are often paramount to
them.
Among the care silos that have been created primarily by reimbursement
policy, the nursing home––or nursing facility, as it is referred to by
Medicare and Medicaid––is the major institutional setting for long-term care.
In 1996, there were 16,706 certified nursing facilities in the United States
with an estimated 1.8 million beds (AARP, 1998a). A small number of people
are receiving care in other institutions, such as long-term care hospitals
and psychiatric facilities.
"Home and community-based care" is a catch-all phrase that refers to a
wide variety of noninstitutional long-term care settings, ranging from
various types of congregate living arrangements to recipients' own homes.
One category of home and community-based care, residential care, includes
assisted living facilities, board and care, and adult foster homes. The
boundaries between institutional and noninstitutional environments are far
from clear. Many assisted living and board and care facilities are large
buildings that strongly resemble hotels or nursing homes in physical
appearance and philosophy. Other residential care options are small, homey
settings that offer privacy and choice to residents. Some make services
available to disabled residents either directly or through contracts; many,
however, are long on room and board and short on care.
In contrast to nursing homes, which are licensed and regulated by the
federal government because they receive significant Medicare and Medicaid
reimbursement, residential care is handled by state and local jurisdictions.
Consequently, there is no consensus on the definition of "residential care";
the nomenclature, as well as the nature and scope of services, varies
tremendously (Mollica, 1998). One recent national study of assisted living
reported an estimated 11,472 facilities with approximately 650,500 beds and
558,400 residents at the beginning of 1998 (Hawes et al., 1999). The
definition of "assisted living" in this study includes facilities that have
11 or more beds; serve a primarily elderly population; provide 24-hour
oversight, housekeeping, and at least two meals a day; and supply personal
assistance with at least two of the following activities: taking
medications, bathing, and dressing.
Residential care tends to be regarded as an option for individuals who
may not require nursing home assistance but who can no longer remain in
their own homes. It is seen as a substitute for living at home and as the
next step in a downward trajectory toward nursing home placement. However,
states such as Oregon and Washington have been using residential care as an
alternative to nursing homes; substantial numbers of elders with severe
disabilities have been relocated or placed in assisted living or adult
foster homes.
Several forms of adult day care have been established to meet the needs
of the elderly long-term care population and their families. The most common
form is adult day care, in which elders with moderate disabilities receive
supervision and personal care, as well as social integration and
companionship in a group setting, usually during the work week from nine to
five. A limited number of programs also operate on weekends, and a few are
experimenting with evening and night hours. While adult day care serves both
physically and cognitively impaired elders, a disproportionate number of
people with Alzheimer's disease and other dementias use this option. It has
been an important source of respite for family caregivers who would
otherwise struggle to maintain their elderly relatives at home. A less
common, and more intensive, form of adult day care is the day health model.
It combines primary care with long-term care and is used by elders with
significant disabilities who often have multiple co-morbidities such as
diabetes, heart disease, and stroke. The Program of All-Inclusive Care for
the Elderly (PACE), which will be described later in this paper, builds its
program around the adult day health model.
Most elderly people with long-term care needs live at home, either in
their own homes, with or without a spouse, or in the home of a close
relative such as a daughter. In this setting, care may be defined as "home
health care," which includes some skilled nursing and supervised custodial
care, and "home care," which includes personal services like bathing,
dressing, and toileting as well as housework such as meal preparation and
laundry.
Who Needs and Uses Long-Term
Care?
The long-term care population is diverse in terms of age
and level of disability. Of the estimated 12.8 million Americans reporting
long-term care needs in 1995, as measured by the need for assistance with
ADLs or IADLs, 57 percent were over the age of 65. Another 40 percent were
adults below that age, and 3 percent were children (National Academy on
Aging, 1997). Among the 229 million Americans under the age of 65, only 0.1
percent were institutional residents and 2 percent were living in the
community with limitations in either ADLs or IADLs (Figure 1; Komisar et
al., 1996). In contrast, among the 34 million elderly in 1995, 5 percent
were nursing home residents and 12 percent were living in the community with
ADL or IADL limitations. Functional limitations increase substantially with
age, particularly for the oldest old. Among those aged 85 and over, 21
percent were in nursing homes in 1995 and another 49 percent were community
residents with long-term care needs (Figure 2; Alecxih, 1997a).
The prevalence of dementia and other forms of cognitive impairment is
difficult to assess. Many
cognitively impaired individuals manifest limitations in ADLS or IADLs, but
these limitations do not represent the entire cognitively disabled
population. A 1996 consensus panel organized by the Agency for Health Care
Policy and Research concluded that the rate of moderate to severe dementia
is about 2 percent in people aged 65-69, 4 percent in people aged 70-74, 8
percent in people aged 75-79, and 16 percent in people over 85. Researchers
analyzing data from the 1994 National Long-Term Care Survey (NLTCS) have
reported that almost one million elders are severely cognitively impaired by
Alzheimer's disease or another form of dementia (ASPE and AoA, 1998). A
smaller study of older people in East Boston, using less restrictive
criteria, concluded that 10 percent of the population over 65 and 47 percent
of the population over 85 had some degree of dementia (Costa et al., 1996).
The proportion of people aged 65 and older who stay overnight in nursing
homes fell by more than 8 percent from 1985 to 1995 (Bishop, 1999). The
decline was most striking for those over age 85, a population comprising
more than half the total elderly nursing home population. This decline may
result from (1) a decline in overall disability rates among the elderly; (2)
the increase in Medicare home health
use from 5 to 9 percent between 1985 and 1995; and (3) the increased use of
assisted living as a substitute for nursing home placement.
Preliminary analyses comparing samples of elderly nursing home residents
from the 1987 National Medical Expenditures Survey and the 1996 Medical
Expenditure Panel Study (Spillman et al., 1997) suggest important changes in
the characteristics of this population over that period. The population in
1996 is older: the proportion of those 85 and older increased from 43.5
percent in 1987 to 49.3 percent in 1996. Nursing home residents are also
more likely than before to be married––13.3 percent in 1987 and 16.7 percent
in 1996. The institutionalized elderly tended to be more severely disabled:
33.3 percent had five ADL limitations in the earlier study and more than 50
percent in the later one. In addition, the population appears to be more
cognitively impaired: a much lower proportion of the 1996 cohort recognized
staff, and a much higher proportion had difficulty making decisions compared
to the 1987 nursing home residents.
Approximately 81 percent of the elderly with ADL or IADL impairments live
in the community. They tend to be much less disabled than those in nursing
homes (Alecxih, 1997a). Sixty percent are disabled only in IADLs.
Approximately 17 percent are considered severely disabled, with limitations
in three or more ADLs. According to recent unpublished data from the 1994
NLTCS, 37 percent of ADL-impaired elderly people living in the community
report that they need help but do not receive it or receive less help than
necessary (Jackson & Doty, 1997). The vast majority of this group are
people with unmet IADL needs, particularly in the areas of meal preparation,
outdoor mobility, and money management. Only 1.4 percent report unmet ADL
needs; another 13.1 percent report undermet ADL needs. Additional
comparative analyses of previous waves of the NLTCS indicate that the
proportion of elderly people who report that they do not receive the ADL
help they need has declined, from 5.2 percent in 1984 to 2.6 percent in 1989
and to 1.4 percent in 1994.
These findings are intriguing because they
suggest that most elderly people with long-term care needs believe their
needs are being met. It is important to remember, however, that most of the
care is being provided "free" by family and friends; as the availability of
such caregivers declines in the future, unmet needs may grow. This research
also identifies a potential way to direct public dollars toward home and
community-based care, particularly when state and local funds are limited.
Most state programs now use some type of functional disability trigger to
determine eligibility for benefits. If assessment tools could be refined to
measure unmet and undermet needs, then funds could be allocated on a
priority basis.
While a minority of all elderly people need long-term care
at any given time, the need for services rises after age 65. The proportion
of elders likely to use nursing homes ranges from 39 percent to 49 percent,
depending on the database; estimates of those living in a nursing home for
at least two years after age 65 range from 16 percent to 25 percent
(Alecxih, 1997a; Murtaugh et al., 1990). One recent simulation model found
that elderly persons are more likely to use home care than nursing home care
over their remaining lifetime (72 percent versus 49 percent) (Table 1;
Alecxih, 1997a). The average lifetime nursing home use per elderly person is
one year, and the average home care use is a little over 200 visits. Many
users receive care for only short periods, while a small proportion uses
substantial amounts of long-term services.
Here again are the key points regarding people who use long-term
care:
- At any given time, slightly more than 10 percent of people over age 65
live in the community and need some degree of long-term care. Another 5
percent are in nursing homes.
- After age 65, almost half of all Americans will spend some time in a
nursing home. Almost three quarters will need some home care.
- The proportion of elderly people spending one or more nights in a
nursing home dropped over the past decade, but those in nursing homes are
more cognitively impaired than before.
- Among elderly people living in the community, more than one in three
report unmet or undermet needs, although most of these problems involve
the less intense instrumental activities of daily living (IADLs) rather
than activities of daily living (ADLs).
- The demand for long-term care increases dramatically with age,
underscoring the need to pay special attention to people aged 85 and over.
Who Provides Care?
Much
long-term care, in contrast to more medically oriented services, is unpaid
assistance provided by family and friends, as already noted. This has been
true in the past, and despite the persistent myth of family abandonment
fostered by many policymakers, it remains true today. Paid providers include
both professional and paraprofessional workers.
Informal Care
The major long-term
care provider is the family and, to a lesser extent, other unpaid "informal"
caregivers. According to the 1994 National Long-Term Care Survey, more than
seven million Americans––mostly family members––provide 120 million hours of
unpaid care to elders with functional disabilities living in the community.
If these caregivers were paid, the cost would run from $45 billion to $94
billion a year (ASPE and AoA, 1998). The overwhelming majority of
noninstitutionalized elders with disabilities––about 95 percent––receive at
least some assistance from relatives, friends, and neighbors. Almost 67
percent rely solely on unpaid help, primarily from wives or daughters. As
disability increases, elders receive more and more informal care. Eighty-six
percent of elders at greatest risk for nursing home placement––those with
three or more ADL limitations––live with others and receive about 60 hours of
informal care per week, supplemented by a little over 14 hours of paid
assistance.
Although statistics are unavailable, we know that many additional
relatives assist disabled family members living in nursing homes. Still
others engage in long-distance caregiving, arranging for the care of a
parent or other relative who lives far away. The importance of an informal
support system is underscored by the fact that 50 percent of elderly people
with long-term care needs who lack a family network live in nursing homes,
compared to only 7 percent of those who do have family caregivers (National
Academy on Aging, 1997).
Experts on long-term care typically refer to the person who regularly
provides the most assistance as the "primary" informal caregiver. Most
elders with disabilities have a primary caregiver who provides the bulk of
the care and obtains and coordinates additional help from other, "secondary"
caregivers, unpaid and paid. Data from the 1989 Informal Caregivers
Survey––the most recent national survey of informal caregivers for the
elderly long-term care population––indicate that almost 75 percent of primary
caregivers are women (ASPE and AoA, 1998). Thirty-six percent of informal
caregivers are adult children. Forty percent are spouses; the prevalence of
spousal caregiving increases with the level of the recipient's disability.
Other relatives and friends are most often secondary helpers, assuming
primary responsibility only when spouses or adult children are not
available.
The average age of the informal caregiver is 60. The great majority of
primary informal caregivers do not hold paying jobs, either because they
have retired or because they belonged to a generation of women who "stayed
at home," out of the paid workforce. Among the 31 percent who are in the
labor force, 66.6 percent work full time. Employed caregivers provide fewer
weekly hours of assistance than nonemployed caregivers, but they still
invest, on average, 18 hours per week. They are able to assume the primary
caregiver's role by relying on additional unpaid help from other family
members and friends and by purchasing care, usually to supplement secondary
informal assistance. Even with that supplemental help, employed primary
caregivers of elders with severe disabilities––those with three or more ADL
limitations––provide between 32 and 39 hours of care per week.
Two-thirds of caregivers with paying jobs report conflicts between jobs
and caregiving that caused them to rearrange their work schedules, to work
fewer paid hours than they otherwise would have, or to take unpaid leaves of
absence from work. Nearly half of female caregivers with part-time paid jobs
report working less because of elder care responsibilities. Sixteen percent
of caregivers with full-time jobs say that caregiving has caused them to
work fewer paid hours than they otherwise would have.
Formal Care Providers
While the
physician is the primary health professional in acute care, nurses provide
the majority of professional long-term care to the elderly. Physicians are
directly involved in long-term care as medical directors of nursing homes or
home health agencies; they also are required to sign off on home health care
plans. According to the 1996 National Sample Survey of Registered Nurses
(RNs), nursing homes or other extended care facilities employed 170,856
registered nurses or 8.1 percent of all RNs (BHPr, 1998). More than 87
percent of RNs working full time in nursing homes serve as head or assistant
head nurse, director of nursing, or assistant director of nursing (IOM,
1996). The Bureau of Labor Statistics (BLS) reports that 112,217 RNs were
employed by home health agencies in 1994 (NAHC, 1997). In addition, 182,110
licensed practical nurses (LPNs) worked in nursing homes in 1994, and
another 39,774 LPNs worked in home health care. Although LPNs are not
allowed to assess or formally plan for care, they often serve as charge
nurses in nursing facilities (IOM, 1996). Their major responsibilities
include supervising the care by nursing assistants, passing medications and
doing treatments, and monitoring residents' conditions.
Rehabilitation in long-term care is most often supplied by therapists. In
1996 there were approximately 115,000 employed physical therapists (PTs),
three-quarters of whom were working full time (BLS, 1999d). According to
statistics from the American Physical Therapy Association (1999), almost 11
percent of PTs were working in skilled nursing or extended care facilities,
4 percent in outpatient rehabilitation centers, and 10 percent in home care.
Only 314 physical therapists were certified in geriatrics in 1998 (American
Physical Therapy Association, 1998). Another 73,000 individuals were working
as occupational therapists or assistants in 1996 (BLS, 1999b; BLS, 1999c),
with an estimated 29 to 31 percent of them employed in freestanding or
hospital-based skilled nursing facilities or related long-term care settings
(Shank, 1999).
Most paid providers of long-term care are paraprofessional
workers––certified nursing assistants in the nursing home or home care
workers who deliver the largest share of the primarily low-tech personal
care and the assistance with managing daily life. After unpaid caregivers,
these workers are the key to helping elders with disabilities maintain their
independence and quality of life. According to the Bureau of Labor
Statistics, an estimated 643,080 nursing assistants were employed in nursing
homes in 1994 (IOM, 1996). Estimates of home care aides are more difficult
to obtain because many aides are hired privately and may not be included in
official statistics; many work part time and may hold more than one job
during the same period. The BLS (1999a) reported that approximately 697,000
homemaker-home health aides were employed by home health agencies,
hospitals, and others in 1996.
Not surprisingly, the majority of paraprofessionals are women. In 1997,
an estimated 89.4 percent of nursing aides were female (BLS, 1998a). A 1995
survey of home care workers reported that 96 percent of those employed by
agencies, and 100 percent of the self-employed, were female (Leon and
Franco, 1998). Nursing home aides tend to be younger than home care aides,
with mean ages of 36.6 years and 46.7 years, respectively (Crown et al.,
1995).
The main points regarding providers are these:
- Both formal and informal long-term care providers are overwhelmingly
female.
- The vast majority of long-term care providers are unpaid family
members-primarily wives and adult daughters-and friends. Sometimes they
must juggle competing demands and cut down their paid employment to
provide care.
- Unlike the acute care system, in which physicians direct most care,
nurses and ancillary therapists are the dominant professional providers of
the long-term care.
- The most important formal long-term care providers are
paraprofessionals-the certified nursing assistants, home health aides and,
home care or personal care workers. They have the most direct, continuing
contact with the elderly person with disabilities.
Long-Term Care
Financing
Financing is the first element of the triple knot
that also includes delivery and workforce preparation. Long-term care costs
make up a small but growing proportion of personal health care expenditures,
having increased from less than 4 percent in 1960 to more than 11 percent in
1993 (Alecxih, 1997b). The financing of long-term care services is a
patchwork of funds from the federal, state, and local levels and private
dollars, primarily paid from the consumer's own pocket.
In 1995, approximately $106.5 billion was spent on long-term care. Public
resources accounted for 57.4 percent of it. The largest part of public
funds, 37.8 percent, came from Medicaid (including 21.1 percent federal and
16.7 percent state dollars). Medicare paid 17.8 percent. Other federal and
state funds supplied lesser amounts (e.g., Veterans Affairs, Older Americans
Act, Social Services Block Grant, state general assistance). Private
insurance accounted for only 5.5 percent of the expenditures, with one out
of three of those dollars attributable to out-of-pocket expenses (Figure 3;
National Academy on Aging, 1997). These estimates do not place a dollar
value on the vast amount of unpaid care, including the value of wages
forgone by caregivers (Stone and Short, 1990). One recent study reported
that $196 billion a year is contributed to the U.S. health and long-term
care systems by familyand friends who provide care at home to people of all ages with chronic
disabilities (Arno et al., 1999).
Medicaid
Medicaid, the
federal/state health insurance program for the poor, is the major public
program covering long-term care for the elderly and for disabled people of
all ages. Despite the public's tremendous interest in, and demand for, care
in the home, Medicaid continues to exhibit a strong bias toward
institutional services. Of the almost $50 billion that Medicaid spent on
long-term care services in 1995, $40 billion supported nursing homes and
institutions for the mentally retarded (intermediate care facilities for the
mentally retarded, or ICF-MRs); only $9.9 billion paid for home and
community-based care. Even so, the home and community-based care sector has
grown tremendously. While total Medicaid spending for long-term care
increased by just 8.6 percent between 1993 and 1994, Medicaid waivers for
noninstitutional spending on home and community-based care and personal care
grew by 26 percent.
In contrast to the large federal role in financing acute care for the
elderly, the states are major financiers of long-term care. There are wide
variations among states, and within individual states, in funding for
institutional, home, and community-based care. Montana had the highest
Medicaid nursing home expenditures per capita in 1994, Arizona the lowest.
Arizona also had the lowest per capita expenditures for home and
community-based care, New York the highest (Graves and Bectel, 1996). In
fact, 35 percent of all Medicaid spending on home care in the United States
in 1995 occurred in New York (Kenney et al., 1998).
While the bias toward nursing homes prevails in most states, there have
been significant efforts to expand the options of home and community-based
care. Besides overall increases in home care spending, several states,
notably Oregon and Washington, have explicitly recognized nursing homes as
the setting of last resort, and have intentionally reduced the number of
nursing home beds; in Oregon the ratio declined from 47 beds per 1000
elderly in 1982 to 35 per 1000 elderly in 1995. Having had an aggressive
home and community-based care policy since the early 1980s, Oregon has
successfully placed many elders with serious disabilities and younger people
with disabilities in alternative assisted living facilities and adult foster
homes. Oregon also supports a strong case management program that allows
many beneficiaries with disabilities to remain in their own homes.
In addition to the federal Medicaid dollars that states match, and the
relatively modest sums available for personal care through the Older
Americans Act and the Social Services Block Grant, many states augment or
create their own separate programs with state funds. Pennsylvania and New
Jersey, for example, have relatively large home and community-based care
programs, which are supported mainly by lottery revenues. A number of local
communities have also been successful in raising funds for long-term care
services. In the Cincinnati area, Hamilton County, Ohio, supports elderly
people with disabilities through a county levy enacted under the leadership
of the local area agency on aging (AAA) (Council on Aging of the Cincinnati
Area, 1997). In 1997, the AAA's Elderly Services Program spent $17 million
for homemaker services, personal care, home-delivered meals, case
management, adult day care, and transportation for frail elderly people
living in 88 neighborhoods throughout Hamilton County. This AAA convinced
elderly and nonelderly citizens that the levy for long-term care services
was necessary, given continuing cuts in federal funds, and that the dollars
would benefit the entire community.
Medicare
Medicare has not
been considered a major payer for long-term care. Many observers have argued
that elderly people are unprepared for long-term care expenses because they
believe that Medicare will cover them. In reality, Medicare primarily covers
acute care costs. Its skilled nursing facility and home health care benefits
are intended as short-term coverage for post-acute care following a
beneficiary's hospitalization. However, the belief that Medicare covers
long-term care has more validity now than in the past. Through a series of
regulatory and administrative changes since 1989, Medicare
has come to
support more long-term, nonskilled personal care (Komisar and Feder, 1998).
Medicare spending for home health services increased nearly tenfold
between 1987 and 1995 (Kenney et al., 1998). A lawsuit and administrative
changes in 1989 led to lower denial rates and more liberal interpretations
of definitions (like "homebound") and scope of services (like management and
evaluation) by fiscal intermediaries––regional contractors for the Health
Care Financing Administration (HCFA, the agency that oversees Medicare and
the federal part of Medicaid) who review and approve or deny all Medicare
claims submitted by providers. Most of the growth in spending is attributed
to an increase in the number of visits, particularly by home health
aides––the low-tech, personal services usually regarded as long-term care.
Komisar and Feder (1998) estimated that visits per beneficiary represented
49 percent of the growth in Medicare's home health spending between 1990 and
1996 (Figure 4). Furthermore, the 10 percent of Medicare home health users
who received more than 200 or more visits in 1994 were responsible for 43
percent of that year's spending on home health care (Figure 5). The length
of home health care service has increased substantially, with a small but
growing proportion of users receiving continuous care for two years or more.
Recent research has found that these beneficiaries tend to be more
ADL-disabled, and to receive more unskilled, home health aide visits, than
beneficiaries receiving short-lived services after an acute care episode
(Komisar and Feder, 1998).
These findings support the contention by some policymakers that a small
but expensive
subpopulation of
Medicare home health users are receiving long-term care through this
program. It is difficult, however, to ascertain from the data how many of
these individuals also need skilled nursing that truly warrants home health
coverage. It is possible that the need for home health care has shifted
since Medicare began in 1965 and that more elderly people with chronic
disabilities coming out of hospitals require more unskilled personal care
than in the past.
There is also some evidence to suggest that providers participating in
Medicaid home care programs are being encouraged by states to help their
clients become eligible for Medicare home health benefits in order to reduce
state costs for long-term care; states are responsible for part of the
Medicaid payment, while Medicare uses federal funds alone (Kenney et al.,
1998). New York and Minnesota have explicit Medicare "maximization"
policies. Medicare maximization was documented by a series of case studies
in which state officials acknowledged that they were under budgetary
pressure to help elderly Medicaid clients become eligible for Medicare home
health benefits (Kenney et al., 1998). In many southern states, there is
strong evidence of maximization; in Mississippi and Tennessee, total
Medicare spending on home health care in 1995 was, respectively, 31 times
and 36 times higher than Medicaid spending on home and community-based care.
This maximization, however, is more likely to be caused by for-profit home
health agencies than by the behavior of state officials.
Congress and the Clinton Administration responded to the huge growth in
Medicare home health spending by enacting provisions in the Balanced Budget
Act of 1997 that significantly reduced Medicare payments to home health
agencies; implemented an interim payment system, with a new payment system
for reimbursement scheduled for 2000; and cracked down on fraud and abuse.
Public policymakers chose to address the "problem" by trying to retain the
post-acute nature of the home health benefit through significant
restructuring of reimbursement. Like others, I believe that the federal
government may have gone too far in its quest to "rein in" home health
agencies. Many home health agencies, particularly the nonprofits, have
closed due to insufficient funds to serve their clients. The ultimate loser
in this policy decision may be the elderly with disabilities who need
long-term as well as post-acute care.
Medicare spending has also increased for subacute care, a vague category
between acute and long-term care. There is no consensus about the definition
of "subacute." Proponents describe it as a set of intensive, coordinated
treatments and services provided to post-acute care patients in order to
minimize or even avoid expensive hospital stays; proponents see subacute
care as an innovative service delivery mechanism. Critics consider it a
marketing strategy by sophisticated providers trying to repackage
traditional post-acute care services supplied by a skilled nursing facility,
rehabilitation facility, or home health service (Harvell, 1997). "Subacute"
may refer to certain types of services, like rehabilitation (Singleton,
1993); to patients, like those who no longer require acute services (Hyatt,
1993); or to levels of services between acute hospital care and skilled
nursing care (Gonzales, 1994).
Medicare spending in nursing facilities increased substantially between
1990 and 1993, from 22 per 1000 beneficiaries to 31 per 1000 beneficiaries
(Alecxih, 1997a). Gage et al. (1997) found that increased Medicare
expenditures for these services resulted in part from administrative and
legislative changes and in part from subacute care for medically complex
patients in nonacute care settings. The question remains whether subacute
care is an innovative practice somewhere between acute hospital care and
skilled nursing care or, as Manard et al. (1995) concluded after a series of
case studies, strategic repackaging––"old wine in new bottles."
Private Long-Term Care
Insurance
Private long-term care insurance pays only a small
part of the bill. In 1995, such insurance covered less than 6 percent of
nursing home and home care costs (National Academy on Aging, 1997). The
market has grown over the past decade; the total number of policies sold
increased from 800,000 in 1987 to almost five million in 1996. A 1997 survey
by the Health Insurance Association of America (HIAA), a trade organization,
indicated that the number of policies purchased increased by more than
600,000 in 1996 alone, the largest number of long-term care policies ever
sold in one year (Coronel, 1998). The estimated total of five million,
however, is the cumulative number of policies ever sold. The number in force
is a fraction of those sold and could be even smaller, given the high lapse
rate seen in this industry.
The HIAA survey reported some fluctuation in the number of companies
marketing long-term care products, with 120 insurers selling long-term care
policies by the end of 1996 (Coronel, 1998). By the end of that year,
approximately 80 percent of the five million long-term care policies that
had been sold were individual policies. About 33.3 percent of the 1996
insurers sold policies either through employer groups or as part of a life
insurance package, up from 14 percent in 1988. These two types of insurance
products represented 20 percent of all long-term care policies sold as of
1996, up from less than 3 percent in 1988.
Long-term care insurance markets vary widely across the country. The 1997
HIAA survey reported that by the end of 1996, half of all individual
policies had been sold in only nine states: California, Florida, Illinois,
Iowa, Missouri, Ohio, Pennsylvania, Texas, and Washington. Market
penetration rates, as measured by the number of policies sold to people aged
65 or over in each state, were highest in Iowa, Montana, Nebraska, North
Dakota, and Washington.
Twelve companies sold about 80 percent of all individual and group
association policies in 1996. All leading insurers offered plans that cover
nursing homes, home health care, adult day care, respite care, and
alternative care services. Ten of the 12 top sellers also offered a separate
assisted living facility benefit. These companies offered plans with an
annual 5 percent compounded inflation rate and with a nonforfeiture benefit;
that is, plans that pay some benefits even if the policy lapsed because of
an individual's failure to pay premiums. The average annual premium for
basic long-term care insurance, covering four years of nursing home or home
health care beginning after the first 20 days of care, purchased at age 65
was $980; the premium rose to $1,321 with nonforfeiture protection, to
$1,829 with 5 percent compounded inflation protection, and to $2,432 with
both additional protections.
Controversy has raged around private long-term care insurance for the
last decade. The private sector argues that public programs will never meet
the demand. Consumers and regulators express concern about high premiums and
fraudulent marketing practices. It is somewhat academic to argue about the
proportion of income or assets people will, or should, spend for long-term
care insurance (Friedland, 1990). One estimate suggests that a single person
ought to have at least $40,000 in liquid assets to consider purchasing
insurance (Polniaszek, 1997). A recent Consumer Reports article suggests
that only about 10 to 20 percent of the elderly can afford long-term care
insurance and notes that premiums for two "adequate" policies bought at age
65 cost $3,500 per year, or 13 percent of the median annual income of
elderly married couples ("How Will You Pay for Your Old Age?" 1997). Whether
this is a high or low proportion of a couple's annual expenditures depends
on how much money the couple has and what else they must buy.
Many observers have suggested that private long-term care insurance might
play a major role in financing these services only if an employer-based
group market develops, in which policies are sold to younger people.
Premiums for LTC insurance sold through employers are lower than those sold
as individual products because (1) employers can market to younger people;
(2) costs for administration and agents' commissions are lower; and (3)
employers might use bargaining power to reduce insurers' profit percentages.
Employer-based products also offer less stringent screening criteria or
eliminate screening entirely. Furthermore, a group market offers increased
ease and comfort of purchase due to fewer coverage decisions required.
According to the 1997 HIAA survey, 1,532 employers were offering
long-term care insurance to their employees and retirees by the end of 1996,
up from seven in 1988 and 1,260 in 1995. More than 500 employer-sponsored
plans were introduced in 1995 and 1996.
Preliminary findings from a recent study of 39 employers representing
900,000 employees indicate that most employers required less stringent
medical underwriting criteria or guaranteed coverage, at least to current
full-time employees (Lutzky et al., 1999). Most also offered coverage to at
least one group in addition to current full-time workers, like parents or
in-laws, spouses, and retired employees. Nearly all employers used a single
long-term care insurer. Most offered no more than three options for benefit
amounts. All employers surveyed offered inflation protection. Just over half
offered some type of nonforfeiture benefit. All but two of the employers
surveyed required the employee to pay the entire premium.
One interesting experiment in combining public and private policies is
the Partnership for Long-Term Care, a demonstration program sponsored by the
Robert Wood Johnson Foundation to promote the development of private funding
sources for long-term care (Cohen, 1997; McCall, 1997). The Partnership,
implemented in four states––California, Connecticut, Indiana, and New
York––uses private insurance to cover the initial costs of long-term care
(Meiners and McKay, 1989); Medicaid pays for services after private
insurance coverage is exhausted. Two models have been developed: a
Dollar-for-Dollar Disregard model in California, Connecticut, and Indiana
and a Total Asset Disregard model in New York. In the first model, consumers
purchase private insurance coverage equal to the amount of assets they wish
to protect. When the private benefits are exhausted, those assets are
disregarded in determining eligibility for Medicaid. The New York model
requires that consumers purchase three years of private nursing home or six
years of home care coverage, and all of the insured's assets are protected
once the private benefits have been exhausted.
One major limitation of this demonstration program––and of the development
of the private long-term insurance market as a whole––is the time lag between
the purchase of a policy and the filing of a claim. Consequently, the
Partnership demonstration has yet to obtain empirical evidence of its
successes or failures. But interesting information on the purchasers of
these products is already available (McCall et al., 1997). Partnership
purchasers were older, had smaller families, and were much more highly
educated than the comparison sample of individuals aged 55 to 75 who were
not covered by Medicaid. They were also more likely to be female, white, in
reportedly good or excellent health, and in a relatively high income
bracket. The Partnership sample was also more likely than the comparison
group to disagree with the statement "Medicare currently provides sufficient
coverage for long-term care" and was much less likely to believe that
government will pay for long-term care if they need it in the future. This
study identified the Partnership purchasers as a self-reliant group, whose
decisions to purchase insurance were based upon the desire to maintain
independence and preserve income and choice, rather than upon a desire to
leave an inheritance.
This discussion of long-term care financing in the United States
underscores the complicated, confusing nature of our fragmented system:
- Long-term care financing is a patchwork of public and private dollars.
More than one-third (37 percent) of the $106.5 billion spent on long-term
care is paid by the consumer.
- The value of informal caregiving, worth $45 to $95 billion annually,
is not included in the estimates of long-term care costs.
- Private insurance pays a small fraction of long-term costs. Without
significant growth in a group market, it is unlikely ever to cover more
than a small population.
- Medicaid is the primary public payer for long-term care. Despite
expanded coverage of home and community-based services, it remains biased
in favor of institutions.
- Due to the blurring of the lines between acute care and long-term
care, such as home health care and subacute care, and efforts by states to
substitute federal dollars for their own, Medicare now pays more of the
costs than before. The extent to which this trend will continue is
uncertain, given the changes in reimbursement for Medicare home health and
skilled nursing facility care under the 1997 Balanced Budget Act and a
federal crackdown on fraud and abuse.
Long-Term Care
Delivery
Policymakers, practitioners, and consumers recognize
the dual, and sometimes conflicting, needs to finance long-term care while
maintaining or improving the quality of care. These two objectives have
contributed to several trends in the delivery of care that have important
implications for the new century, when aging baby boomers will probably
increase the demand for an array of services.
Integration of Acute and Long-Term Care Services
A number of
initiatives at the federal, state, and provider levels seek to manage acute
and long-term care by integrating services in various ways. There is no
consensus on the definition of "integration." Some people insist funding as
well as delivery must be integrated. Others argue that the goal of
integration is to coordinate all services in order to meet the broad needs
of individuals and their families (Stone and Katz, 1996).
Most observers agree that integrated services demand the following
elements:
- broad and flexible benefits, including primary, acute, and long-term
care;
- far-reaching delivery systems that go beyond traditional hospital,
physician, and post-acute services to community-based long-term care, care
management, and specialty providers;
- adoption of mechanisms that actually integrate care, such as care
management and care planning protocols, interdisciplinary care teams,
centralized records, and integrated information systems;
- overarching quality-control systems with a single point of
accountability; and
- flexible funding with incentives to integrate funding streams and
minimize cost shifting (Booth et al., 1997).
Despite the rhetoric of integration, the dearth of experimentation and
successful innovation is not surprising. A primary barrier to integration of
acute and long-term care is the fragmentation of funding sources,
particularly Medicare and Medicaid. While a single source of financing is
not essential, integration is impeded when providers lack financial
incentives to develop a package of services in various settings that meets
the needs of the elderly person with disabilities. Furthermore, Medicare and
Medicaid have different eligibility requirements and coverage rules that may
impede the development of a rational plan of care for a disabled person who
needs acute and long-term care.
A second barrier is the fear of financial risk on the part of plans and
providers involved in integrating acute and long-term care. There is no
valid and reliable risk-adjustment methodology, or other technique, to
ensure that payments will cover the costs of providing care to people with
chronic illness and disability. The 1997 Balanced Budget Act attempted to
stimulate the Medicare managed care market by introducing Medicare+Choice.
But the availability and diversity of managed care options have not
expanded. On the contrary, HMOs have been cutting back on attractive
benefits, such as prescription drug coverage and plans with no premiums.
There are numerous reports of plans leaving many Medicare markets. Given
these trends, managed care plans are unlikely to offer long-term care
benefits to their enrollees.
Perhaps the most neglected barrier is the lack of knowledge, information,
and training that health and long-term care providers need in order to
offer, coordinate, and manage an array of services. There is no recognized
authority in our current health care system for managing care across time,
place, and profession, and little acknowledgment that individuals with
chronic disabilities shift among physicians, hospitals, nursing homes, and
their own homes. Acute and post-acute care providers generally do not
communicate with long-term care providers, even though an elderly person may
be getting services from both sectors. The absence of management information
systems and patient databases that span time and place is another obstacle
to the integration of acute and long-term care.
Federal Demonstrations
Most of the
research on integration of acute and long-term care has been conducted
through several federal demonstration projects. The Social HMO (SHMO), which
began in 1985, adds community care services and short-term nursing home care
to a Medicare-HMO acute care plan. Under this program, a broad cross-section
of people eligible for Medicare receive acute care and limited
community-based long-term care coverage. The Program of All Inclusive Care
for the Elderly (PACE) is a publicly funded approach to long-term care for
frail elders who are eligible for Medicaid and nursing home certifiable.
This program began as a demonstration project funded by HCFA and the Robert
Wood Johnson Foundation to replicate an integrated model of care in San
Francisco's Chinatown called On-Lok. The distinguishing features of PACE
are: (1) integrated funding and providers' financial risk through capitated
Medicare and Medicaid reimbursements; (2) integrated service delivery with
adult day care as the focal point; (3) case management through
interdisciplinary care teams, from the physician to the van driver; and (4)
a vigorous attempt to keep individuals in community care and out of nursing
homes (Branch et al., 1995; Cohen, 1997).
The findings from these demonstrations have been equivocal at best,
despite their long history (Newcomer et al., 1995a; Wiener and Skaggs,
1995). Researchers have pointed out the failure of the first generation of
SHMOs to integrate services by acute and long-term care providers (Manton et
al., 1994). Gruenberg et al. (1993), who compared PACE enrollee costs with a
national sample of fee-for-service Medicare beneficiaries, found that PACE
provides Medicare with a 9 percent to 34 percent saving, depending on the
analytical assumptions and sites selected. Shen (1993) has shown that
inpatient hospital use rates for frail elderly PACE enrollees are much lower
than a comparable frail population. But others have referred to PACE as a
"boutique" model that has tended to serve an average of 200 clients per site
and that may have engaged in client "skimming" (Branch et al., 1995).
At the same time, these models are intuitively appealing and have helped
shed light on better ways to coordinate care across a broad range of
services and systems. The Balanced Budget Act of 1997 makes PACE a permanent
Medicare provider; many state officials, often without much empirical
evidence, have expressed the desire to create systems like PACE in their own
communities. HCFA is currently supporting a second generation of SHMOs
designed to improve on the first generation (Kane et al., 1997). Rather than
controlling for adverse selection by proportional enrollment at various
disability levels, the new models will establish reimbursement rates based
on an individual's impairment and illness profile at the time of enrollment
and annually thereafter. In addition, the new generation will establish
geriatric health programs for all enrollees, not just those with long-term
care needs. This demonstration will focus on coordinating acute care with a
set of flexible, user-friendly, efficient long-term care services.
The EverCare model of managed care for nursing home residents, originally
a subsidiary of the United Health Care Corporation, also shows promise for
an integrated approach to serving the institutionalized population. Through
Medicare and Medicaid waivers, HCFA is currently testing this model in nine
sites. The program enrolls nursing home residents in a risk-based HMO, with
the nursing home costs covered by Medicaid or private insurance. Teams of
geriatricians and nurse practitioners provide more intensive primary care
services than usual to nursing home residents, and coordinate this care with
the long-term care services provided by nurses and nurses' assistants.
Because EverCare pays for all medical services incurred by the nursing home
resident, regardless of the site where they are delivered, there is no
incentive for the nursing home provider to shift costs to Medicare by
hospitalizing a resident. The intent is to maintain enrollees' health and
functioning, to treat enrollees holistically, and to prevent medical crises
that could lead to unnecessary hospitalizations (Shield, 1996). While no
HCFA evaluations have been completed yet, the program appears to save money
by shortening the length of hospital stays and paying the nursing homes for
the additional costs associated with caring for residents who would
otherwise be hospitalized (Malone et al., 1993). Nursing homes participate
because they see the marketing advantage in the improved, coordinated health
care their residents receive (Kane et al., 1998).
State Initiatives
Motivated by
escalating Medicaid budgets and growing numbers of aged, blind, and disabled
enrollees, many states have expressed interest in the integration of acute
and long-term care. They are particularly concerned about their "dual
eligible" population––those eligible for Medicare and Medicaid who account
for about 17 percent of the states' Medicaid enrollees and 30 to 35 percent
of program expenditures (Booth et al., 1997). As of 1995, 19 states had some
type of integration initiative. Several are experimenting with innovative
financing and service delivery of acute and long-term care for elderly
people on Medicaid and younger people with disabilities. Arizona's long-term
care system is part of a mandatory Medicaid managed care program begun in
the late 1980s. Medicaid acute, long-term, and behavioral health services
are included in the Arizona package, but Medicare funding is not explicitly
integrated into the program. The program, however, implicitly achieves a
degree of integration at the contractor level, because Medicare services are
usually delivered through the organization that provides the capitated
long-term care services; Medicare reimburses the contractor on a
fee-for-service basis.
Minnesota was the first state to receive Medicare and Medicaid waivers to
explicitly integrate acute and long-term care for elders eligible for both
programs in seven counties in the Minneapolis-St. Paul area. The Minnesota
Senior Health Options (MSHO) program offers package of acute and long-term
services through a choice of three managed care plans, with voluntary
enrollment. Plans pay for the first 180 days of nursing home costs and then
are reimbursed on a fee-for-service basis with the plan continuing to
provide all services. MSHO includes financial incentives for plans to use
home and community-based care in lieu of institutional services.
Texas Star+Plus has enrolled 60,000 aged, blind, and disabled
beneficiaries, including 31,000 people eligible for Medicare and Medicaid,
into one of three managed care plans in the Houston area. Two have
established Medicare risk mechanisms. Medicaid enrollment is mandatory;
beneficiaries may also choose to receive their Medicare coverage through one
of the two Medicare risk plans participating in this pilot project. As an
incentive to enroll in the full acute and long-term care package, they will
receive an unlimited prescription drug benefit.
The Robert Wood Johnson Foundation and HCFA are sponsoring evaluations of
these programs and demonstrations in other states, but the results of these
studies will not be available for some time. Meanwhile, the rhetoric of
integration will continue, as policymakers, providers, and researchers
struggle to implement the details.
Provider Initiatives
Despite the
lack of financial incentives to integrate a continuum of care for elders
with chronic disabilities, a number of providers are attempting to create
integrated service systems. The motivation is not purely altruistic,
although these providers do, for the most part, represent organizations and
health professionals that have traditionally cared for the elderly and that
understand the need to coordinate and manage care. There are also strong
market incentives to develop such systems. Hospitals trying to fill beds,
and skilled nursing facilities looking to expand beyond traditional
long-term care, see integration as a way to develop business. Hospitals are
integrating vertically––buying nursing homes, rehabilitation centers, and
home health agencies––in an effort to become an all-purpose provider in the
community. Skilled nursing facilities and, to a lesser extent, home health
agencies, are more likely to be integrating horizontally––building alliances
with hospitals, physicians' groups, assisted living developers, and other
community-based providers.
The National Chronic Care Consortium (NCCC) is a strategic alliance of 31
nonprofit health systems in the United States and Canada that share a vision
of integrated care for individuals with chronic health conditions and
disabilities. The NCCC aims to enable member organizations to serve as
laboratories for establishing chronic care networks. Networks are defined as
"a set of primary, acute and long-term care providers in a given community
committed to working together to collectively prevent, delay, and reduce the
progression of disability associated with serious and disabling chronic
conditions." To achieve this goal, the NCCC advocates the creation of
integrated administration, information, financing, and care management
arrangements to help providers work together in minimizing costs while
maximizing the long-term health and well-being of the population being
served.
One of the major contributions by the NCCC is the development of the
Self-Assessment for Systems Integration (SASI) tool, a set of guidebooks and
training materials supported by a grant from the John A. Hartford
Foundation. SASI identifies nine key objectives essential for chronic care
integration and addresses these objectives through sections on goal-setting,
planning, self-measurement, and resources. To date, SASI has been used
internally by selected NCCC members to assess their progress toward
integration. No evaluations have been published, so it is difficult to
assess SASI's effectiveness. The NCCC intends to market this package to
provider groups interested in developing integrated systems, but SASI has
not yet been used by non-NCCC members.
Assisted Living
Another trend
that is attracting attention from policymakers, private developers, and
consumers is assisted living. One significant problem with this trend is the
lack of a consistent definition used by providers, regulators, and
policymakers. Some argue that "assisted living" is just a '90s label for a
long-term care setting that has been around for centuries––another example of
"old wine in new bottles." Homes for the aged, frequently associated with
nonprofit fraternal and religious organizations, proliferated in the
nineteenth and early twentieth centuries to supply room and board for poor,
infirm elderly people. Over the past three decades, sporadic attention has
focused on scandalous mistreatment of residents in board and care homes, a
version of homes for the aged that also became a refuge for the people with
chronic mental illness in response to the deinstitutionalization frenzy of
the 1960s.
In the 1980s the term "residential care facility" became fashionable as a
catch-all label for places providing room, board, and some level of
protective oversight. Hawes et al. (1993) have estimated that about a half
million people live in residential care facilities or board and care homes
in the United States. Perhaps twice that number are living in unlicensed
facilities (Newcomer et al., 1997).
It is somewhat ironic that homes for the aged, board and care homes, and
other types of residential care were replaced in the late 1960s and 1970s by
nursing homes modeled after hospitals. "Nursing homes" have delivered far
less nursing care than the name suggests. Today residential care is again in
fashion. It is viewed as a desirable alternative to nursing homes because of
its ostensibly less institutional character and its emphasis on a social,
rather than a medical, model. A number of states, including Oregon,
Washington, Florida, and Colorado, have aggressively tried to use
residential care as a less costly substitute for institutions. One recent
study estimates that anywhere between 15 and 70 percent of the nursing home
population, nationwide, could live in residential care instead (Spector et
al., 1996). Kane (1997) has questioned the judgment of hospital discharge
planners who refer elders with disabilities to nursing homes, rather than
alternative arrangements, because 24-hour care is supposedly available. She
notes that remarkably little nursing care is provided in nursing homes. For
example, a survey of nursing home residents in six states found that 39
percent of the residents received no care from a registered nurse in 24
hours; residents who did receive such care received an average of only 7.9
minutes; care by a nursing assistant averaged 76.9 minutes daily (Friedlob,
1993). Despite these arguments, empirical research has been equivocal on the
issue of the "substitutability" and cost savings of residential care
compared to nursing home placement (Kane et al., 1991; Newcomer et al.,
1995b; Sherwood and Morris, 1983). In fact, residential care is more likely
to be a substitute for living in one's own home than in a nursing home.
What appears to distinguish assisted living from residential care in
general and from the somewhat pejorative "board and care" is a matter of
philosophy and emphasis on care, not just housing (Kane, 1997). Some have
also suggested that assisted living is the rich person's residential care
while board and care is for poor people who rely on federal Supplemental
Security Income (SSI) and state supplements (SSP) to cover the costs. A
recent survey of assisted living regulations in 50 states indicates that
four states-Alabama, Rhode Island, South Dakota, and Wyoming-use the terms
"assisted living" and "board and care" interchangeably (Mollica and Snow,
1996).
For the other states, key characteristics differentiating assisted
living from other types of residential care are:
- an explicit focus on privacy, autonomy, and independence, including
the ability to lock doors and use a separate bathroom;
- an emphasis on apartment settings in which residents may choose to
share living space; and
- the direct provision of, or arrangement for, personal care and some
nursing services, depending on degrees of disability.
As noted in an earlier section on care settings, Hawes et al. (1999)
recently completed the first national survey of assisted living, using a
national probability sample of facilities that met several criteria. These
include having 11 or more beds; primarily serving an elderly population; and
providing 24-hour staff oversight, housekeeping, at least two meals a day,
and personal assistance with two or more activities of daily living (ADLs).
According to preliminary findings from a telephone survey, most facilities
offer consumers a range of privacy options. Single rooms were the most
common residential unit (52 percent); the rest of the units were apartments.
The most common type of single room was a private room with a full bathroom;
the most common apartment was a one-bedroom for single occupancy.
While most facilities reported a general willingness to serve residents
with moderate physical limitations, fewer than half were willing to admit or
retain residents who needed assistance with transfers from a bed or chair.
Furthermore, fewer than half of participating facilities would admit (47
percent) or retain (45 percent) residents with moderate to severe cognitive
impairment; only 28 percent would admit or retain residents with behavioral
symptoms such as wandering.
In assessing the extent to which these facilities' characteristics match
the philosophy of assisted living, Hawes et al. (1999) concluded that only
11 percent offered high privacy and high service. Another 18 percent
provided high privacy but low service. Twelve percent offered low privacy
but high service. The researchers noted that residents of these assisted
living facilities had considerably more privacy and choice than residents in
most nursing homes and in the board and care homes they had investigated in
a previous study. Nevertheless, facilities varied widely. A substantial
segment of the industry provided environments that did not reflect the
philosophy of assisted living. Furthermore, the many facilities whose
admission or retention policies excluded people with the cognitive
impairments or severe physical disabilities suggests that assisted living is
not an environment where those who experience significant functional decline
can "age in place."
While assisted living does warrant serious consideration by policymakers,
providers, and consumers, a number of impediments to its development need
attention. Today, the assisted living market is primarily composed of the
well-off elderly, with little available to moderate- or low-income
consumers, as the recent study by Hawes et al. (1999) confirms. This gap is
due, in part, to the limited sources and inadequate amounts of public
financing (primarily SSI and SSP), which could help subsidize room, board,
and care for financially strapped individuals and their families. The most
common monthly rate for facilities offering either high service or high
privacy was approximately $1,800 in 1998.
Other impediments to assisted living include concerns, expressed by state
policymakers and potential private providers, about balancing consumer
choice and privacy on one hand with health, safety, and liability
considerations on the other. One major issue reflecting this concern is the
degree to which states are willing to moderate their nurse practice acts to
allow the delegation of certain tasks, such as administering medication,
caring for wounds, and changing catheters (Kane, 1997). A number of states,
such as Oregon, Kansas, Texas, Minnesota, and New York, have included nurse
delegation provisions, but the latitude and interpretations of the
provisions vary tremendously. Not surprisingly, they have met serious
resistance by many nurses' organizations, for whom professional turf is as
significant as care issues.
The motives of the assisted living industry have also been questioned.
The industry includes more real estate developers and hotel managers than
care providers. Furthermore, as nursing homes look for new markets and
reimbursement strategies that circumvent government regulation, many skilled
nursing facilities may simply lay carpet, install door locks, and hang out
the "assisted living" shingle. Finally, there are questions about the amount
of assistance that these facilities actually provide. According to the study
by Hawes et al., 65 percent of the participating facilities supplied "low
service"; that is, they did not have an RN on staff or did not provide
nursing care, although they did provide 24-hour staff oversight,
housekeeping, two meals, and personal assistance. Another 5 percent,
categorized as "minimal service," supplied no personal assistance with ADLs.
Given that many facilities do not admit or retain people with severe
physical disabilities or cognitive impairment, the level of care is
additional cause for concern.
Consumer-Directed Care
The
1990s may someday be referred to as the period when the health care and
long-term care consumer came of age. Consumer choice is a relatively recent
phenomenon in acute care. It has a lengthier history in long-term care, due
primarily to the disability rights and independent living movements that
started in the 1960s and 1970s. Catalyzed by younger people with physical
disabilities who strongly oppose institutionalization and want a range of
home and community-based options controlled by consumers, a trend toward
more consumer involvement and direction has begun to emerge among the
elderly.
The care of consumer direction includes the ability of people with
long-term care needs to take an active part in choosing that care. Consumer
direction emphasizes privacy, autonomy, and the right to "manage one's own
risk." In long-term care, it is seen as a way to level the playing field
between institutional care and home and community-based care. A growing
number of policymakers also see it as a potential way to save money through
more efficient allocation of resources and delivery of care.
Policy options range from consumer involvement in planning and
decision-making to the ultimate in consumer direction-providing cash
benefits to beneficiaries and letting them purchase their own services.
Except for one program administered by the U.S. Department of Veterans
Affairs, most consumer direction has occurred at the state level, through
Medicaid home and community-based waivers and state-funded personal
assistance service programs. California, for example, has a large
independent provider component to its In-Home Supportive Services (IHSS)
program, which is funded by Medicaid, for elderly and younger disabled home
care clients. Rather than receiving case managed services through an agency,
participants can choose to hire and fire their own workers. As employers,
they can direct their care and be more responsible for its quality. The
state supports a registry of home care workers and also allows clients to
hire their own family caregivers.
A recent study funded by the Department of Health and Human Services
compared client and worker outcomes for those participating in IHSS's
independent provider program with those receiving case-managed services from
a county agency (Doty et al., 1999). The study's principal finding is that
clients in the consumer-directed model had more desirable outcomes than
those receiving professionally managed services within three broadly defined
areas: satisfaction with services, feelings of empowerment, and perceived
quality of life. No significant differences were found between the two
models in client safety and unmet needs. Workers in the agency-based
programs received, on average, higher hourly wages and were also more likely
than independent providers to receive health insurance coverage and other
job-related benefits. A significantly higher percentage of independent
providers as compared to agency employees had jobs in addition to the IHSS
work. However, workers in both models reported generally high levels of job
satisfaction and there were no significant differences between the two
worker categories on this measure. The independent providers reported better
relationships with their clients than did the agency-based workers.
At least 35 of the 50 states have programs that provide some form of
financial payment to relatives and other informal caregivers who perform
homemaking, chores, and personal services (Linsk et al., 1992). The programs
may compensate for caregivers' work or only for their out-of-pocket expenses
(Keigher and Stone, 1992). Wage programs provide compensation directly to
the caregiver, although most programs provide neither full-time employment
nor fringe benefits to persons caring for one or two recipients. Allowance
programs provide a flat grant geared to the financial needs of the family or
caregiver and the care recipient's condition. Caregivers may qualify because
of their eligibility for public income assistance, shared household status,
or relationship to the recipients.
Direct cash payments for long-term care services, including payments to
caregivers, have been much more controversial in the United States than in
other countries. Germany's 1994 Dependency Insurance Act, for example,
provides universal coverage of long-term care for disabled people of all
ages, with a choice of cash, vendor payments, or a combination of cash and
in-kind benefits (Schneider, 1997). During the first year of operation, 80
percent of care recipients who were least impaired and nearly 66.6 percent
of severely disabled recipients chose cash benefits. Since the value of the
program's cash payments is considerably lower than the cost of vendor
payments, the overwhelming choice of cash helped Germany's care funds keep
their budgets within the prescribed limits.
The Medicaid program precludes direct cash payments to care recipients.
However, through a joint planning and evaluation grant from the Department
of Health and Human Services and the Robert Wood Johnson Foundation, three
states––New Jersey, Arkansas, and Florida––have received Medicaid waivers to
experiment with "cashing out" the home and community-based care benefit. The
states are now designing their respective programs, including (1)
establishing the cash payment rates; (2) developing the marketing strategy
for enrolling people eligible for Medicaid into a treatment group and a
control group, which will receive case-managed agency services; (3) planning
a counseling program to help cash recipients choose how to use the dollars;
and (4) creating a quality-monitoring system that balances consumer autonomy
with concerns about safety and potential fraud and abuse.
As new managed care initiatives focus on choices made by the informed
consumer, it will be interesting to see how rhetoric is translated into
reality in the long-term care arena. Historically, U.S. policymakers have
been comfortable with cash benefits for certain subpopulations, like
veterans and workers with disabilities. President Clinton proposed a $3,000
nonrefundable tax credit for people needing long-term care, measured by
having at least two ADL limitations, or for family members caring for them.
While modest, this proposal would provide consumer-directed benefits, that
is, a cash refund. Policymakers have been less supportive of direct payments
to allegedly "undeserving" individuals, like those in specific Supplemental
Security Income eligibility categories, including mentally disabled children
and substance abusers. Concerns about misuse of dollars as well as potential
liability for unforeseen mishaps, such as abuse of elderly clients by
privately hired workers or deaths of elders because of insufficient or
inappropriate service delivery, have impeded the growth of this trend in the
United States.
Consumer direction is not an option for all people with long-term care
needs, but it may prove to be an effective and efficient way to allocate
precious resources to an important part of this population. Proponents of
consumer direction see it as a relatively safe and inexpensive way to meet
consumers' needs and allow payment of relatives and friends for important
services. Opponents view it as a vehicle for depressing wages, exploiting
workers, and jeopardizing the health and well-being of vulnerable consumers
who may not be able to supervise their own care adequately (Feldman, 1997).
Although little empirical research has tested either perspective,
forthcoming findings from the "cash and counseling" demonstration and other
studies may shed light on the potential and pitfalls of this emerging
trend.
A review of trends in long-term care service delivery suggests the
following points:
- A number of federal, state, and provider-based initiatives have
experimented with integrating acute and long-term care services. But
integration has been seriously hampered by fragmented financing; a lack of
knowledge of, and training in, how to actually integrate service delivery;
and questions about whether integrated care would really save much money.
- The development of assisted living has been hampered by a lack of
consensus on definitions and variations in regulation and oversight from
state to state.
- The assisted living market consists primarily of upper-middle- and
high-income elderly, who often receive little service for their money.
- Several states have aggressively used assisted living as a substitute
for nursing home care, opening up the market to modest- and low-income
elders.
- Consumer-directed home and community-based care, while not appropriate
for all people who need long-term care, offers choice and autonomy for
those who prefer to hire and fire their own workers and direct their own
care.
- Preliminary studies suggest that the quality of care is not
jeopardized when consumer direction is chosen in lieu of an
agency-directed model.
- Significant ethical issues surround consumer direction, including the
balance between autonomy and safety, the potential exploitation of
personal care workers, the appropriateness of this option for cognitively
impaired older adults, and the potential for fraud and abuse by family
members.
- Other countries, such as Germany and Austria, provide natural
laboratories for studying the advantages and disadvantages of
consumer-direction.
Workforce
Preparation
Financing mechanisms and delivery systems are
essential to sound long-term care policy. A third factor is the most
important and the most often overlooked: the adequacy and availability of a
trained workforce to deliver care. Today's professional and paraprofessional
workforce is woefully unprepared to meet the long-term care needs of an
aging society. This problem is likely to worsen as the baby boomers age in
the first half of the new century.
While physicians are not primarily responsible for the provision of
long-term care, their involvement is essential for linking primary, acute,
and long-term care delivery. In order to treat elderly persons with
comorbidities and functional limitations, physicians should know what
long-term care resources are available in the local community to meet their
patients' medical needs. Finally, they should be sensitive to the needs of
family members, who are often the primary caregivers and decision makers for
elderly parents.
Unfortunately, most physicians in the United States have no training in
long-term care and do not understand the relationships among their patients'
health conditions and their physical, social, and psychological needs. Some
physicians are exposed to long-term care when their patients are discharged
from hospitals to home health agencies, but most simply sign off on care
plans rather than helping to provide and monitor care.
Medical directors of nursing homes generally have formal or on-the-job
training in geriatrics, but few physicians choose this specialty, which
trains health professionals to understand the unique yet diverse needs of
elderly patients. Only 8,800 of the 684,000 American physicians (1.2
percent) in the United States today are certified in geriatric medicine
(Larson, 1998). Only 14 of the nation's 126 medical schools offered courses
in geriatric medicine in 1992, and fewer than 3 percent of recent medical
school graduates have taken electives in geriatrics. In 1992, a survey of
primary care residencies found that long-term care experience in geriatrics
was required in 86 percent of family practice residency programs, compared
with 25 percent of internal medicine programs (Counsell et al., 1994). Most
geriatric curricula in the programs surveyed were taught in nursing homes,
with little emphasis upon rehabilitation, home care, and coordination of
acute and chronic care.
Of the 98,000 medical residencies and fellowships supported by Medicare
in 1998, only 324 were in geriatric medicine or geriatric psychiatry.
Furthermore, more than 20 percent of slots in the top 16 geriatric
fellowship programs went unfilled from 1991 to 1994 for lack of qualified
applicants (Besdine, 1994). Only about 500 geriatric specialists now teach
in American medical schools. This faculty shortage is exacerbated because
these academic geriatricians spend most of their time treating patients.
Clinical care, not teaching, makes money.
The shortage of paraprofessional workers––certified nursing aides in
nursing homes and home care aides––is currently a crisis for long-term care
providers. Ironically, much of this crisis can be attributed to booming
local economies, where unemployment rates are low and where nursing homes
and home care agencies compete with fast food restaurants that pay higher
wages and offer better benefits. Paraprofessionals are among the worst paid
workers in the service sector ("Who Makes What," 1998). Unattractive job
features include low wages and benefits, lack of career advancement, high
potential for injury, and exposure to much emotional stress. According to
National Occupational Employment and Wage Data for 1996 (BLS, 1997), the
median hourly wage was $7.46 for nursing assistants, $7.51 for home health
aides, and $6.48 for personal and home care aides. Furthermore, Crown et al.
(1995) reported that 28.5 percent of nursing home aides had no health
insurance coverage; the comparable estimate for home care aides was 38.9
percent. Only 35.7 percent of nursing home aides and 24.6 percent of home
care aides had employer-sponsored pension plans.
Despite federal requirements that nursing home and home care aides
working in organizations certified by Medicare or Medicaid receive at least
75 hours of training (Simpkins, 1997; IOM, 1996), the content and quality of
paraprofessional training vary widely across the United States (Feldman,
1994). Nursing aides' incidence rate of injuries and illness that involved
loss of work days is one of the highest among all categories of service
industry employees (OSHA, 1998); the injury incidence rate per 100 full-time
workers in 1996 was 16.2 percent for nursing home aides and 8.6 percent for
home health care workers. The most common problems were back injuries
resulting from inappropriate lifting and transferring of patients. Workers
also suffer abuse in both institutions and homes, often inflicted by
cognitively impaired clients with severe behavior problems. Racial tensions
between white care recipients and aides who are people of color may
exacerbate the situation.
Heavy workloads; a lack of respect, autonomy, and opportunities for
career advancement; a lack of extrinsic rewards, such as adequate wages and
health benefits; and the availability of other job opportunities lead to
high burnout rates. Annual turnover far exceeds that of other types of
employees in the service industry (Atchley, 1996; Banaszak-Holl and Hines,
1996). High turnover has significant financial and psychological costs for
providers. It also increases the workload and lowers the morale of remaining
staff members. Several large studies have confirmed that recruitment and
retention would be improved by initiatives that: (1) provide competitive
salaries; (2) create opportunities for career advancement; (3) explicitly
recognize aides' contributions; (4) involve aides in care planning; and (5)
foster a good working relationship with nursing staffs (Feldman, 1994;
Banaszak-Holl and Hines, 1996). Research findings suggest that wages, while
important, are not the key to recruiting and retaining workers. Many
caregivers derive immense satisfaction from caring and nurturing; most
respond well to professional recognition and career opportunities within the
long-term care system. Salary and benefits, however, are likely to become
major factors in this strong economy.
Several key points can be drawn from this discussion:
- The lack of a well-trained, well-qualified workforce for long-term
care is an even graver problem than financing and delivery problems.
- Despite the aging of the population, a demographic imperative, few
physicians or other health professionals are trained in geriatrics. There
are few financial or cultural incentives to obtain training or pursue
careers in the care of older adults with chronic illness and disabilities.
The shortage of paraprofessionals and the high turnover rates are caused
by inadequate wages, benefits, professional recognitions, and career
advancement opportunities. The shortage has been exacerbated by the strong
economy, in which competition from other service industries like fast food
chains is fierce.
The Future of Long-Term Care
Demand
In the future, a number of factors will converge to
shape the magnitude, scope, and nature of the demand for long-term care:
changing demographics and the health and functional status of the
population; the availability of family members and other unpaid, "informal"
caregivers; the financial status of various generations and the degree to
which they plan in advance for long-term care; and the availability and cost
of institutional care and community-based alternatives. A crystal ball is
invariably inaccurate. Projections must therefore be examined cautiously.
Major progress in the treatment of Alzheimer's disease, for example, or a
pandemic that wipes out a large subpopulation could significantly influence
the size and character of the long-term care population.
The Aging Population
The new century will bring an
unprecedented increase in the size of the elderly population as the large
baby boom generation ages. While most elderly people are not disabled, the
likelihood of their needing long-term care increases with age. The
population aged 65 and over is expected to increase substantially between
now and 2040. Different assumptions about mortality, fertility, and
immigration, however, create widely disparate estimates of the size of that
increase (Friedland and Summer, 1999), ranging from 59 million to 92 million
elders living in the United States (U.S. Bureau of the Census, 1996).
Estimates for those aged 85 years or older-those most likely to need
long-term care-range from 8.3 million to 20.9 million in 2040. Older women
will continue to outnumber men, although in recent years women have not seen
the marked decline in deaths from heart disease that have benefited men
(Treas, 1995). If trends like this continue, the gender gap in longevity may
shrink somewhat.
The change in the number and proportion of elderly population will be
affected, as well, by racial and ethnic diversity. In 1995, 85 percent of
the U.S. population aged 65 and over was non-Hispanic white, 8 percent was
black, and 5 percent was Hispanic; the remainder was other races.
Projections for 2050 are 67 percent non-Hispanic white, 10 percent black, 16
percent Hispanic, almost 7 percent Asian Pacific Islander, and less than 1
percent other races (Figure 6; Friedland and Summer, 1999).
Increased Longevity: Quantity vs. Quality
Part of the projected
increase in the number and proportion of elderly people in the twenty-first
century is due to an increase in life expectancy at age 65. In 1995, men
could expect to live 15.5 years beyond that.
Males can
expect to live 17.6 more years in 2020 and 18.5 years in 2030. The
comparable estimates for females are 20.6 years in 2020 and 21.2 years in
2030, up from 19 years in 1995 (U.S. Bureau of the Census, 1996).
The extent to which these added years will be free of disability is
subject to debate. Studies have indicated that life expectancy at birth in
the United States was 72.7 years in 1976 and 75.4 years in 1990 (Colves and
Blanchet, 1983; Crimmins et al., 1997). But life expectancy free of
disability was only 56 years and 58.9 years, respectively; the other 16.7
years and 16.5 years were spent with a limitation in activity. Some
researchers argue that medical advances have increased life expectancy but
have not delayed the onset of illness (GAO, 1994). They predict that
declining death rates may actually increase long-term care needs if, for
example, more people live long enough to develop age-related conditions such
as dementia or live longer with existing disabilities.
Researchers
have been particularly interested in projecting the size of the long-term
care population in an aging America. One recent analysis, which applied 1994
National Health Interview Survey data to U.S. Census Bureau projections,
estimates that the number of people aged 65 and over with activity
limitations will rise to 22 million in 2020 and to 28 million in 2030; in
1994, the number was 12 million (Rice, 1996). Kunkel and Applebaum (1992)
have emphasized the need to use a dynamic model, which does not necessarily
assume that the rates of disability and mortality will remain constant over
the next half century. Using various scenarios, they note that by the year
2040––when the baby boomers reach their eighties and nineties––the number of
older Americans with disabilities will have increased significantly. Their
estimates of elderly people with a long-term disability range from 14.8 to
22.6 million people, depending on the assumptions built into the model.
Manton and colleagues (1997) report that disability rates among the
elderly may be declining (Figure 7). They estimate that the prevalence of
disability among older Americans for 1994, as measured by limitations in
ADLs, was 3.6 percent lower than the
1982 standardized rate (21.3 percent, down from 24.9 percent). According to
these researchers, the number of elderly Americans with a serious chronic
disability grew from 6.4 million in 1982 to 7.1 million in 1994. But if the
disability rate had remained at the 1982 level, the number in 1994 would
have been 8.4 million. This research team estimates that the disability
decline between 1982 and 1994 reduced the population in institutions by
400,000, saving $17.3 billion in nursing home costs in 1994. Using the
constant 1982 disability rate, the estimated number of elders with
disabilities in 2030 would be 17 million; at the constant estimated 1996
disability rate, the number would be 14.6 million; based on a 1.5 percent
annual decline estimated by Manton and colleagues (1997), the number would
be 8.5 million.
Geographic Diversity
While estimates of the aging population
are usually presented for the nation as a whole, the number of elderly
people, and their impact on the demand for long-term care, vary tremendously
from state to state. As baby boomers start to reach retirement age in 2011,
the size of the population aged 65 and over is expected to increase in all
states (Campbell, 1997). California and Florida will continue to rank first
and second, respectively, in having the most elderly residents. By 2025,
Texas will rank third, passing New York and Pennsylvania.
In 1995, Florida had the largest proportion of elderly (19 percent), and
Alaska the smallest (5 percent) (Table 2). By 2025, Florida is expected to
remain the oldest state, with more than 26 percent of its population aged 65
or older. Alaska will remain the youngest state, with 10 percent elderly.
Only five states had populations that were at least 15 percent elderly in
1995. The rapid growth in the ranks of older people is further illustrated
by the fact that by 2025, 48 states will reach or exceed that proportion.
Only Alaska (10 percent), California (13 percent), and the District of
Columbia (14 percent) will not meet or exceed 15 percent.
Changes in the geographic distribution of elders are affected by several
factors. Growth of the nonelderly population is one factor. Alaska has a
very small proportion of elders because many of its newcomers are young.
Similarly, Utah had relatively few elders in 1994 (9 percent), due to an
unusually high fertility rate and many young newcomers. Conversely, Iowa
ranks fifth in the proportion of elderly (15.2 percent), chiefly because
younger people have moved away. Consequently, elderly Iowans may face
serious long-term care problems because their pool of potential unpaid
caregivers has shrunk.
The migration of younger people has more impact than migration by the
elderly (Treas and Longino, 1997). Older people are more likely to stay put
than the nonelderly (Treas and Longino, 1997), although, contrary to
conventional wisdom, the United States in general is a country of
"non-movers." In 1994, 94.4 percent of those 65 or older remained in place,
compared with 81.7 percent of those under 65 (Table 3). The movers in both
age groups tended to remain in the same county. Interstate migration rates
have remained stable over four decades, with most migration by older people
concentrated in their early years of retirement (Longino, 1998). Almost two
million people aged 60 or older moved from one state to another during the
five-year period ending in 1990. Florida received the most in-migrants (23.8
percent of the total), followed by California (6.9 percent), Arizona (5.2
percent), and Texas (4.1 percent) (Table 4).
The 1990
census data show a changing pattern of out-migration by retirees. While it
is generally assumed that the states people leave are all in the "rust
belt," fewer migrants left New York, Illinois, and Ohio in 1990 than in
1980. Surprisingly, some sunbelt states such as California and Florida were
rising to the top of the list of states that people leave (Table 5).
If the migration rate remains stable and most of the future movers are
recent retirees, the number of elderly who move long distances should grow
very little. The median age among current interstate movers is in the
mid-60s. Growth in that median age could affect the demand for long-term
care, particularly for states receiving an influx of retirees. But people
who do not migrate can also affect the need for long-term care. Young
retirees who "age in place" in states like Florida and Arizona can require
long-term care as time passes.
A countervailing trend is the "return migrant" phenomenon. Older,
widowed, and less-healthy elderly people may return to their state of
o
