Long-Term Care: Diverse, Growing Population Includes Millions of
Americans of All Ages (Letter Report, 11/07/94, GAO/HEHS-95-26).

Contrary to popular perception, not all Americans needing long-term care
are elderly or institutionalized.  Of the 12 million Americans requiring
such care, 5 million are working-age adults and about half a million are
children; the vast majority--10 million--live at home or in community
residential facilities. The long-term care needs of this population vary
considerably, from around-the-clock nursing care to occasional
assistance with household chores, such as cooking and house cleaning.
The aging of the baby boom generation means that long-term care needs
will increase well into the next century, as much as doubling among the
elderly population in the next 25 years.  Meaningful projections of the
nation's future long-term care needs, however, are clouded by
uncertainty about whether baby boomers will live longer, healthier lives
than preceding generations and by a lack of good estimates on the future
size of the nonelderly disabled population.  Further, researchers
believe that the number of younger disabled has grown in recent decades
and will continue to do so, in part as a result of changing medical
technology and other factors that may allow more low-birth-weight
infants to reach childhood, for example, or more young adults to survive
disabling accidents.  The diverse ages, needs, and conditions of the
long-term care population mean that greater flexibility is needed in the
design and administration of programs to match the range of individual
needs.

--------------------------- Indexing Terms -----------------------------

 REPORTNUM:  HEHS-95-26
     TITLE:  Long-Term Care: Diverse, Growing Population Includes 
             Millions of Americans of All Ages
      DATE:  11/07/94
   SUBJECT:  Long-term care
             Community health services
             Elderly persons
             Handicapped persons
             Aid for the handicapped
             Disadvantaged persons
             Home health care services
             Nursing homes
             Projections

             
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Cover
================================================================ COVER


Report to Congressional Requesters

November 1994

LONG-TERM CARE - DIVERSE, GROWING
POPULATION INCLUDES MILLIONS OF
AMERICANS OF ALL AGES

GAO/HEHS-95-26

Long-Term Care Population


Abbreviations
=============================================================== ABBREV

  ADL - activity of daily living
  AIDS - acquired immunodeficiency syndrome
  ASPE - Office of the Assistant Secretary for Planning and
     Evaluation
  IADL - instrumental activity of daily living
  SIPP - Survey of Income and Program Participation

Letter
=============================================================== LETTER


B-256273

November 7, 1994

The Honorable David Pryor
Chairman
The Honorable William Cohen
Ranking Minority Member
Special Committee on Aging
United States Senate

The Honorable Dave Durenberger
Ranking Minority Member
Subcommittee on Disability Policy
Committee on Labor and Human Resources
United States Senate

Last year, individuals and their families, as well as federal, state,
and local government programs, spent more than $100 billion on
long-term care.  Both the demand for and expenditures on these
services are projected to escalate rapidly.  Long-term care has been
evolving in recent years, both in terms of who receives services and
where those services are delivered.  Families, the traditional
providers of long-term care, are less able to maintain caregiving
responsibilities as they cope with competing demands.  Furthermore,
many program recipients currently are dissatisfied with the
accessibility and type of public services they receive.\1

Government at all levels, the private sector, and those who need
long-term care, as well as their families, are struggling with their
roles in the face of these trends.  State governments and other
entities have been experimenting with alternatives to current
programs to better meet individual needs.  As all players rethink
long-term care strategies, more information is needed about the size
and scope of the population needing long-term care. 

At your joint request, this report addresses this issue by providing
estimates of the current and future number of people needing
long-term care, as well as characteristics of this population.  These
estimates include those who currently receive family care or paid
services, as well as those who do not.  Our review objectives for
this effort were to (1) estimate the prevalence of current long-term
care need; (2) report on the future prevalence of need, including the
factors that may influence it; and (3) describe the diversity of
needs among different groups.  To address these objectives, we
reviewed key literature; interviewed researchers, practitioners,
experts, and long-term care consumers; and visited state and local
programs providing long-term care services.  A full description of
our methodology appears in appendix I. 


--------------------
\1 For more discussion of dissatisfaction with current long-term care
services, see Long-Term Care:  Demography, Dollars, and
Dissatisfaction Drive Reform (GAO/T-HEHS-94-140, Apr.  12, 1994). 


   RESULTS IN BRIEF
------------------------------------------------------------ Letter :1

The long-term care population today includes more than 12 million
people who say they need assistance with everyday activities as a
result of chronic conditions such as heart disease, mental
retardation, or acquired immunodeficiency syndrome (AIDS).  Contrary
to popular perception, millions of these individuals are not elderly. 
About 5 million are working-age adults and about half a million are
children under age 18.  And, in contrast to traditional notions of
long-term care, the vast majority of these people do not live in
nursing homes or other institutions.  Nearly 10 million live at home
or in other small community residences.  Furthermore, most people
needing long-term care assistance receive their care unpaid from
family members or friends, while a much smaller number receive
government services. 

The long-term care needs of this population vary considerably, from
around-the-clock nursing care to occasional assistance with household
chores, such as cooking and house cleaning.  We estimate that about
5.1 million people are so severely disabled that they need
substantial assistance from others with basic self-care activities
like eating and going to the bathroom or significant supervision for
their own protection.  About half of this severely disabled group, or
2.4 million people, live in institutions like nursing homes; the
remaining 2.7 million live at home or in community settings. 

The aging of the large baby boom generation means that long-term care
need will increase well into the next century, as much as doubling
among the elderly population in the next 25 years.  Meaningful
projections of the nation's future long-term care needs, however, are
clouded by uncertainty about whether baby boomers will live longer,
healthier lives than preceding generations and by a lack of good
estimates on the future size of the nonelderly disabled population. 
The rising demand for long-term care services could be especially
acute in future years if longevity increases and with it the number
of elderly who are disabled.  Long-term care needs could be
mitigated, on the other hand, by medical breakthroughs that reduce
disability and enhance the quality of life. 

Less is known about the future long-term care needs of the
nonelderly, and projections of this population are difficult. 
Researchers nevertheless believe that the number of younger disabled
has grown in recent decades and will continue to do so, in part as a
result of changing medical technology and other factors that may
enable more low-birth-weight infants to reach childhood, for example,
or more young adults to survive disabling accidents. 

The diverse ages, needs, and conditions of the long-term care
population mean that greater flexibility is needed in the design and
administration of programs to match the range of individual needs. 
Many different conditions, both physical and mental, can cause
disability and necessitate different types of assistance.  An
individual with a physical condition like quadriplegia, for example,
may need hands-on help to get in and out of bed, while someone with a
mental condition, such as Alzheimer's disease, might instead require
constant supervision for their own safety.  In addition, age can
affect the type of assistance needed, because expectations of what is
an everyday activity change across the lifespan.  Children and
nonelderly adults, who constitute about 40 percent of the long-term
care population, often have different long-term care needs than the
disabled elderly, such as assistance attending school or working. 


   BACKGROUND
------------------------------------------------------------ Letter :2

Individuals need long-term care when a chronic condition, trauma, or
illness limits their ability to perform independently activities
essential to maintaining themselves or their households, or puts them
at risk of behavior that may harm themselves or others.  Different
definitions of long-term care yield different estimates of the number
of people who need long-term care services.  In this report, we
define a need for long-term care as needing assistance from another
person to perform certain everyday activities or as residing in an
institution such as a nursing home. 

Both physical and mental limitations can create a long-term care
need.  "Long-term care" is shorthand for the wide array of services
provided to help compensate for these limitations.\2 Most of the
support needed is not complex medical care, but assistance from
others with the routines of daily living.  As such, long-term care
often involves the most intimate aspects of people's lives--what and
when they eat, personal hygiene, getting dressed, using the bathroom. 
Services vary widely in their intensity and cost, depending on
individuals' conditions, the severity of their needs, and their
environment.  Long-term care assistance can range from helping a
frail elderly person dress, eat, and use the bathroom to skills
training and medication management for a mentally ill person to
technology and nursing care for a ventilator-dependent child. 

Need for long-term care is generally defined, irrespective of age and
diagnosis, by long-lasting limitations in the ability to undertake
basic activities and routines of daily living independently.  One
common way to assess these limitations is to measure an individual's
ability to perform basic self-care tasks, often called the activities
of daily living (ADL).  These include eating, bathing, dressing,
getting to and using the bathroom, and getting in or out of a bed or
chair.  Less severe impairments are often measured through the
ability to perform household chores and social tasks, known as
instrumental activities of daily living (IADL).  These include going
outside the home, keeping track of money or bills, preparing meals,
doing light housework, and using the telephone.\3 In addition, other
criteria--such as the ability to attend school or behavioral
problems--are sometimes used for children or people with mental
illness, whose age or condition means that limitations in self-care
and household tasks may not be as valid for assessing need. 

Families and friends provide the bulk of long-term care services to
people who need them.  Nonetheless, public and private spending on
long-term care services was estimated to exceed $108 billion in 1993. 
About $70 billion of this money was federal and state government
spending, primarily through the Medicaid program.  Almost all the
remaining $38 billion was paid by individuals and their families. 
Assuming the continuation of current spending patterns under current
law, expenditures for long-term care are projected to more than
double in the next 25 years. 


--------------------
\2 Some people with disabilities prefer to use the term "services"
rather than "care" and think of themselves as "consumers" rather than
"clients" or "care recipients." They prefer a more active role for
themselves in their use of services. 

\3 These are the ADLs and IADLs measured in the data reported here. 
In other analyses, continence (bladder or bowel control or both) and
the ability to get around inside the home are sometimes considered
ADLs, and laundry, grocery shopping, heavy work, and taking
medications may be included as IADLs. 


   LONG-TERM CARE POPULATION NOT
   ALL IN NURSING HOMES OR ELDERLY
------------------------------------------------------------ Letter :3

The long-term care population today includes an estimated more than
12 million Americans of all ages, in many different settings, who
need assistance from others to carry out everyday activities as a
result of physical and mental impairments.  Contrary to popular
perception, most people within this population live at home or in
community residential settings, not in institutions such as nursing
homes.  The largest group is elderly, but approximately 40 percent
are working-age adults or children.  Of those receiving assistance
from others, most are helped by family members and friends, while a
much smaller number receive assistance from government programs. 

Most people who need long-term care do not live in institutions.  Of
the more than 12 million Americans estimated to need long-term care
assistance, only about 2.4 million live in institutions, such as
nursing homes, chronic care hospitals, or other facilities.  (See
table 1.) The remaining 10 million individuals live at home or in
small community residential settings, such as group homes or
supervised apartments. 



                          Table 1
          
           Most Needing Long-Term Care Are Not in
                        Institutions

                   (Numbers in thousands)

                      In          At home or
Age           institutio        in community         Total
group                 ns            settings    population
------------  ----------  ------------------  ------------
Children              90                 330           420
Working-age          710               4,380         5,090
 adults
Elderly            1,640               5,690         7,330
==========================================================
Total              2,440              10,400        12,840
----------------------------------------------------------
Sources:  Based on information from the U.S.  Department of Health
and Human Services, and the Institute for Health Policy Studies at
the University of California, San Francisco.  For more detail, see
appendix II. 

Most people needing long-term care are elderly, a total of about 7.3
million.  Overall, approximately three-fifths of the long-term care
population are elderly.  (See fig.  1.) Nonetheless, a sizable
proportion of people needing long-term care is under age 65--about
5.1 million working-age adults and 400,000 children with long-term
care needs either reside in institutions or live in the community. 

   Figure 1:  Most People Needing
   Long-Term Care Are Elderly

   (See figure in printed
   edition.)

Note:  Includes people needing long-term care in institutions or in
the community.  Children are those under age 18, working-age adults
are those aged 18 to 64, and the elderly are those aged 65 and older. 

Source:  Based on data shown in table 1. 


   LEVEL OF NEED VARIES; SMALLER
   GROUP HAS SEVERE DISABILITIES
------------------------------------------------------------ Letter :4

Among the more than 12 million people with limitations in everyday
activities, there is a considerable range in the intensity and
severity of their need for long-term care.  Some people need
assistance only with household tasks, like preparing meals or doing
housework, while others cannot even undertake basic self-care, such
as eating and bathing, without help from others.  Still others may
have a long-term care need for supervision or guidance, because of
their mental impairments, regardless of their ability to care for
themselves. 

One common way to identify people with more severe needs is to focus
only on those individuals needing assistance with self-care and to
exclude those who only need assistance with less intense household
tasks.  This smaller group of 6.2 million people includes about 3.8
million adults outside of institutions who require another person's
help with at least one of the basic self-care tasks--eating,
dressing, bathing, or using the bathroom--which are more essential to
independent personal functioning, and 2.4 million people in
institutions. 

The most severely disabled population--those who need substantial
assistance--comprises approximately 5.1 million individuals.  About
2.4 million of these people live in institutions because of their
disabilities.  Another 1.3 million adults live in the community and
need assistance from others with three or more self-care tasks, for
example, people with advanced multiple sclerosis who cannot eat,
dress, use the bathroom, or get out of bed without help.  Finally,
researchers in the Office of the Assistant Secretary for Planning and
Evaluation of the Department of Health and Human Services estimate an
additional 1.4 million people require significant assistance because
of mental disabilities, even if they do not report needing help with
three or more self-care activities.  People with mental
impairments--such as mental retardation or schizophrenia--may be
physically capable of performing everyday activities without
assistance, but may be unlikely to do them in a safe, consistent, or
appropriate manner.  Even with no limitations in self-care, they may
engage in other inappropriate behaviors that are a danger to
themselves or others and require substantial supervision.  It is
important to note that the actual number of people who ultimately
participate in any program may differ from these estimates, depending
on how need for assistance is measured and the level of demand for
program services. 

Limitations in a number of self-care tasks are a good indicator of
severity of need because the amount and intensity of long-term care
assistance a person needs increase appreciably with the number of his
or her impairments.  Recent data confirm that the average number of
hours of care received--both from family and paid sources--rises with
the number of basic self-care activities with which an individual
needs assistance.  This increase is especially dramatic between
limitations in two or fewer and three or more self-care tasks. 

In addition to the elderly and working-aged adults, children are an
important component of the long-term care population and often have
distinct care needs.  Among young children, need for long-term care
is harder to assess because their age makes the traditional measures
of self-care and household maintenance inappropriate measures of
their abilities.  Infants and toddlers, for example, are not expected
to dress themselves or prepare their own food, whether or not they
are disabled.  Instead, children's long-term care needs may be
assessed by other criteria, such as limitations in activities more
typical for their age group.  About 330,000 children living at home
are unable to engage in major play or school activities because of
disabilities such as epilepsy, asthma, or cystic fibrosis.  A smaller
population of approximately 170,000 children are severely disabled
with conditions such as cerebral palsy or mental retardation and need
assistance with self-care if they are 6 years and older or if they
are under that age and have a similar level of impairment.  An
additional 90,000 children live in settings away from their families,
such as a facility for those with mental illness or mental
retardation, or homes for the physically handicapped.\4


--------------------
\4 This statistic includes children living in a range of settings
outside their homes, such as foster care placements and nursing
homes.  Not all are large institutions, some may only have a few
beds.  See app.  II for details. 


   FUTURE LONG-TERM CARE NEED WILL
   GROW, BUT EXTENT IS UNCERTAIN
------------------------------------------------------------ Letter :5

In the future, long-term care need will grow, but predicting the
magnitude and composition of that growth is complicated by several
factors.  Experts agree that population aging will increase the
number of disabled elderly needing long-term care over the next
several decades, but no consensus exists on the size of that
increase.  In addition, estimates of future long-term care need among
the nonelderly disabled are difficult to project.  Finally, several
factors, such as medical advances or changes in death rates, could
increase or decrease need among elderly and nonelderly persons alike. 


      POPULATION AGING WILL
      INCREASE NEED
---------------------------------------------------------- Letter :5.1

The 21st century will be marked by a dramatic increase in the size of
the elderly population as the large baby boom generation ages.  While
most elderly people are not disabled, the elderly as a whole have the
greatest likelihood of needing long-term care.  As a result of this
population aging, researchers predict that the number of elderly
needing long-term care may as much as double in the next 25 years. 
Figure 2 shows that recent projections of elderly needing long-term
care reach between 10 million and 14 million by 2020, and 14 million
to 24 million in 2060, compared with about 7 million today. 

   Figure 2:  Population Aging
   Will Increase Long-Term Care
   Need

   (See figure in printed
   edition.)

Source:  These projections are taken from K.  Manton,
"Epidemiological, Demographic, and Social Correlates of Disability
among the Elderly," The Millbank Quarterly, vol.  67 (1989), tables
1, 3, and 4. 

While the sheer number of future elderly is expected to drive up
demand for long-term care services, projections of the number of
elderly needing long-term care in the next century vary because of
different assumptions about the future prevalence of disability. 
Changes in death and disease rates among the nation's older
population, for example, will affect the need for long-term care. 
Long-term care need intensifies significantly with age, especially
after age 85.  It is this subpopulation, the elderly aged 85 and
older, that is projected to grow most rapidly.  Some researchers
argue that medical advances have increased life expectancy but have
not changed the onset of illness.  They predict that declining death
rates may actually increase long-term care need if, for example, more
people live to develop age-related disabling conditions such as
Alzheimer's disease or live longer with existing disabilities. 
Others argue that disability is becoming increasingly compressed into
a shorter portion of the lifespan, decreasing the number of years
long-term care is needed.  Improved treatments or prevention of
common disabling conditions among the elderly, such as strokes and
heart disease, could lessen long-term care need, independent of death
rates. 

Furthermore, according to the Bureau of the Census, future
generations of elderly are likely to be different from the elderly of
today--better educated and more culturally diverse--in ways that
could affect their ultimate health and economic status.  Higher
levels of both education and income are often associated with lower
levels of disability.  At the same time, the economic resources
available in old age vary significantly with race and ethnicity. 
Increasing cultural diversity among the elderly may increase the
number of disabled elderly with few resources who need publicly
subsidized long-term care. 


      ESTIMATES OF FUTURE NEED
      AMONG NONELDERLY DIFFICULT
---------------------------------------------------------- Letter :5.2

Estimates of future long-term care need among the nonelderly are
difficult for a variety of reasons.  There are fewer data on
disability among the nonelderly with which to project future
disability.  Relative to the elderly, severe disability among those
under 65 is less common.  Small changes in how frequently certain
disabling conditions, such as cerebral palsy, occur among the
nonelderly can significantly affect the numbers needing long-term
care.  These factors make it difficult to predict future disability
trends and subsequent long-term care need. 

Researchers agree that the number of nonelderly people with long-term
care needs has grown in recent decades and that this increase is
likely to continue.  Some of the reasons suggested for past growth
include better technology and improved access to acute care, both of
which may make it possible for people to survive previously fatal
conditions while sustaining permanent disabilities.  Furthermore,
survival of many low-birth-weight babies to childhood or children
with developmental disabilities into adulthood may also be increasing
the numbers of nonelderly needing long-term care. 


      OTHER FACTORS COULD AFFECT
      FUTURE DISABILITY
---------------------------------------------------------- Letter :5.3

Future disability and long-term care need among people of all ages
will be affected by several factors.  Changes in health behaviors can
have an impact on the prevalence of common disabling conditions.  For
example, the percentage of Americans who smoke cigarettes dropped
nearly 40 percent--from 42 to 26 percent--between 1965 and 1991. 
Smoking is strongly related to future heart disease, one of the most
common causes of functional impairments that necessitate long-term
care.  Research also suggests many traumatic brain injuries, which
can cause both mental and physical disabilities, could be prevented
by improved motor vehicle safety or by use of protective head gear by
bicyclists and motorcyclists.  Greater use of these safety devices
may decrease the incidence of such injuries and subsequent long-term
care need. 

We do not know now how future medical advances will affect long-term
care need.  Improved treatments and technology may result in the
prevention of certain chronic conditions, or simply in incremental or
marginal improvements in the management of their symptoms.  Improved
management of AIDS complications has and could continue to result in
the need for long-term care over longer periods.  Lower death rates
from two common causes of functional limitation, heart disease and
stroke, may actually result in a larger number of people living with
disabilities. 


   POPULATION INCLUDES DIVERSE
   DISABILITIES AND NEEDS
------------------------------------------------------------ Letter :6

The long-term care population is very diverse and includes people of
all ages with a wide array of disabling conditions and assistance
needs.  Long-term care need can stem from a variety of limitations in
mental or physical abilities, or both.  While the type of long-term
care assistance needed is often related to the disabling condition,
needs are also affected by an individual's age.  Need for publicly
funded long-term care is a function of several additional factors,
including the availability of family caregivers and financial
resources. 


      MANY DIFFERENT PHYSICAL,
      MENTAL CONDITIONS CAN CREATE
      LONG-TERM CARE NEED
---------------------------------------------------------- Letter :6.1

Individuals of all ages need long-term care as a result of many
different physical and mental conditions.  Physical disabilities,
such as difficulty walking, are caused by a range of conditions, such
as paraplegia, heart disease, asthma, arthritis, and many others. 
Mental disabilities, such as a limited ability to reason or
inappropriate and dangerous behavior, result from conditions that
include severe and persistent mental illness, dementia, traumatic
brain injuries, mental retardation, and other developmental
disabilities.  Some people can have both types of disabilities
resulting, for example, from Alzheimer's disease and a stroke or from
a traumatic brain injury. 

There are both similarities and differences between the elderly and
nonelderly population in the conditions most often causing a need for
assistance.  Among both the elderly and the nonelderly, arthritis and
heart disease are two of the most common causes of long-term care
need.  Among the nonelderly, mental retardation is the third most
frequent condition necessitating long-term care.  About 670,000
nonelderly adults need assistance with household tasks or self-care
because of mental retardation or a related developmental disability. 
An additional 140,000 individuals under 65 live in institutions,
primarily facilities for those with mental retardation, and 180,000
more live in small residential facilities.  Mental retardation is
less common among the elderly; however, dementia, generally stemming
from Alzheimer's disease, is especially prevalent and a frequent
cause of long-term care need.  More than half a million elderly
living at home or in community settings report needing assistance
with everyday activities as a result of Alzheimer's disease or other
dementias.  Many fewer adults under 65 have Alzheimer's; however,
about 750,000 people aged 18 to 64 need long-term care because of a
mental or emotional illness or condition, such as schizophrenia or
bipolar disorder.  The most common chronic conditions limiting
activity in children are respiratory disorders, such as asthma;
mental retardation; and other mental or nervous system conditions,
such as cerebral palsy. 


      DISABILITY, AGE AFFECT TYPE
      OF ASSISTANCE NEEDED
---------------------------------------------------------- Letter :6.2

The range of disabilities and ages in the long-term care population
creates significant diversity in the types of support needed--both
between and within population groups.  The long-term care assistance
an individual needs is often related to the type of
impairment--mental or physical--causing his or her disability. 
People with mental disabilities are more likely to need supervision,
protection, or verbal reminders to accomplish everyday activities,
rather than the hands-on assistance people with physical disabilities
frequently need.  However, not everyone with the same disabling
condition needs the same type of care.  Long-term care need can even
vary for the same person over time as conditions, such as AIDS,
change and symptoms worsen or abate. 

Age can also influence the type of assistance required, and long-term
care needs and goals often vary among the elderly, working-age
adults, and children.  These differences are related to the
expectations and everyday activities typical for each stage of life. 
Severely disabled children frequently need services to support their
families in continuing the care they already provide as well as
assistance with learning basic life skills and attending school.  In
contrast, nonelderly adults more often require services to help them
establish their own households or regain lost skills.  They may want
assistance to enable them to work and participate in related
activities.  Elderly people, who often no longer work, may instead
need long-term care services that let them maintain their
independence and stay in their own homes and communities despite a
decline in their abilities. 


      NEED FOR PUBLICLY FUNDED
      CARE AFFECTED BY ADDITIONAL
      FACTORS
---------------------------------------------------------- Letter :6.3

While a person's need for long-term care begins with functional
limitations, the need and demand for publicly subsidized services are
influenced by several additional factors.  Many people needing
long-term care already receive unpaid help from family or friends,
and may prefer this informal care to a public program.  Currently
most disabled people do receive their care unpaid from family members
and friends, primarily women.  However, greater geographic dispersion
of families, smaller family sizes, and the large percentage of women
who work outside the home are straining the capacity of this care
source.  Large numbers of potential caregivers in the baby boom
generation may ease this strain in the near future.  However, as
members of this generation become disabled themselves and need
assistance, they may have fewer family members available to care for
them.  Fewer informal caregivers, even with no increase in disability
prevalence, could increase demand on public programs.  In addition,
some people may be able to purchase the assistance they need with
private funds.  Some people, even with very severe disabilities, do
not want assistance from others. 

Finally, an individual's environment can also play a role in the need
for government assistance.  Community resources, such as public
transportation, and accommodation in public places, such as
workplaces and housing, can make it easier to function with a
disability without the assistance of another person. 


   CONCLUSIONS
------------------------------------------------------------ Letter :7

The current long-term care population's size and diversity have
implications for how public and private programs are designed and
administered.  Because most people needing long-term care live in
their own communities--not nursing homes or institutions--services
available in the home and community are increasingly important.  The
long-term care needs of the large number of disabled working-age
adults and children are often different from those of the disabled
elderly.  Furthermore, not everyone with a disability needs long-term
care to function independently.  Within the long-term care population
severity of need varies, with some people needing only occasional aid
and a much smaller number requiring substantial assistance.  Need for
publicly subsidized services is often a function of several factors
in addition to disability, including individual financial resources,
availability of family and other unpaid caregivers, and community
resources.  Finally, there is uncertainty about the extent of growth
in future need and demand for long-term care. 


---------------------------------------------------------- Letter :7.1

We discussed a draft of this report with officials from the
Department of Health and Human Services, and they generally agreed
with our findings.  As agreed with your offices, unless you publicly
announce its contents earlier, we plan no further distribution of
this report until 30 days from the date of this letter.  At that
time, we will send copies to the Secretary of Health and Human
Services and other interested parties and make copies available to
others upon request. 

Please call me on (202) 512-7215 if you or your staff have any
questions concerning this report.  Other contacts for this report are
listed in appendix III. 

Jane L.  Ross
Director, Income Security Issues


METHODOLOGY
=========================================================== Appendix I

To address our objectives for this report, we interviewed
researchers, practitioners, and long-term care consumers, and held
panel discussions with experts in the long-term care field.  We
visited several state and local programs providing long-term care
services for the elderly and nonelderly to identify disability groups
currently receiving long-term care services, to examine the
prevalence of their needs, and to learn about the diversity of
long-term care needs within and among disability groups.  These
included programs in Massachusetts, Michigan, Minnesota, Oregon,
Pennsylvania, Texas, and Vermont. 

In addition, we synthesized key literature in the area of long-term
care.  Finally, we used information from a forum we held in July 1993
on long-term care reform issues that brought together federal and
state program officials, representatives of different disability
groups, academic experts, and congressional staff to discuss service
delivery, program accountability, and cost control issues. 

We conducted our review between January and September 1994 in
accordance with generally accepted government auditing standards. 


SOURCE OF POPULATION ESTIMATES
========================================================== Appendix II

The population estimates presented in this report were based on data
from several sources.  This appendix discusses these sources by
subpopulation. 


   INSTITUTIONAL RESIDENTS, ALL
   AGES
-------------------------------------------------------- Appendix II:1

The number of people in institutions, by age, was calculated by
Michele Adler of the Office of Disability and Long-Term Care Policy,
Office of the Assistant Secretary for Planning and Evaluation (ASPE),
Department of Health and Human Services.  These estimates include
people with long-term care needs in nursing homes, homes for the
physically handicapped, intermediate care and other facilities for
those with mental retardation, facilities for people with mental
illness, child welfare/foster care for children with mental
retardation, and correctional facilities, as well as residents of
shelters or other facilities for the homeless.  Not all of these
facilities are large; some may only have a few beds.  The data
sources for these estimates were the 1990 Decennial Census; the
Center for Mental Health Services, Substance Abuse and Mental Health
Administration; and Charlie Lakin of the Center on Residential
Services and Community Living at the University of Minnesota.  These
data will be published in an upcoming ASPE Research Note, "Population
Estimates of Disability and Long-Term Care."


   ADULTS WITH ADL AND IADL
   LIMITATIONS
-------------------------------------------------------- Appendix II:2

Researchers at ASPE used data from the Survey of Income and Program
Participation (SIPP), conducted by the Bureau of the Census, to
estimate that 4,380 working-age (aged 18 to 64) and 5,690 elderly
adults need assistance with one or more activities of daily living
(ADL) or instrumental activities of daily living (IADL).  These
estimates are drawn from the third wave of the 1990 SIPP panel and
represent the noninstitutionalized adult population of the United
States.  IADLs, which are household and social tasks, assessed in
SIPP include going outside the home, for example to shop or visit a
doctor's office; keeping track of money and bills; preparing meals;
doing light housework, such as washing dishes or sweeping a floor;
and using the telephone.  ADLs, which are basic self-care tasks,
include getting in or out of a bed or a chair; taking a bath or
shower; dressing; eating; or using the toilet, including getting to
the toilet. 

Using the same SIPP data provided by ASPE, we estimated that 3.8
million people aged 18 and older need assistance with 1 or more ADL
and 1.3 million need assistance with 3 or more. 


   CHILDREN WITH DISABILITIES
   LIVING AT HOME
-------------------------------------------------------- Appendix II:3

Researchers from the Institute for Health Policy Studies at the
University of California, San Francisco used data from the 1991
Health Interview Survey to estimate that approximately 330,000
children under age 18 were unable to perform a major activity typical
for their age group as a result of their disabilities.  The Health
Interview Survey, which is conducted annually by the National Center
for Health Statistics, measures limitations in ordinary play for
children under 5 years of age and limitations in school attendance
for children aged 5 to 17.  This estimate was originally published in
a paper for the Child Health Consortium, "Meeting Children's
Long-Term Care Needs Under the Health Security Act's Home and
Community-Based Services Program," in January 1994. 

ASPE researchers estimated in August 1994 that 170,000 children under
age 18 were severely disabled and needed long-term care.  Severe
disability was defined as limitations in at least one ADL for
children aged 6 and older and a comparable level of impairment for
children under this age.  This estimate was based on the 1989
National Health Interview Survey and the 1987 National Medical
Expenditure Survey, and will also be published in the forthcoming
"Population Estimates of Disability and Long-Term Care."


   PEOPLE WITH SEVERE MENTAL
   DISABILITIES
-------------------------------------------------------- Appendix II:4

ASPE researcher John Drabek estimated that approximately 1.4 million
people have a level of cognitive impairment similar in severity to
needing assistance with three or more ADLs.  This population includes
140,000 people of all ages with severe or profound mental retardation
or another developmental disability, 150,000 people aged 18 to 64
with severe mental illness, and 1,100,000 elderly people with
Alzheimer's disease or other mental illness.  Severe cognitive
impairment among the elderly was defined as (1) missing four or more
questions on the Short, Portable, Mini-Mental Status Questionnaire;
and (2) one of the following:  needing assistance with medication
management, money management, or telephoning; evidence of a behavior
problem; or needing assistance with one or more ADLs.  These data
were drawn from the 1989 National Long-Term Care Survey.  Data on
nonelderly adults with mental illness were derived from SIPP, the
1989 Health Interview Survey, and the East Baltimore Mental Health
Survey of the National Institute of Mental Health's Epidemiological
Catchment Area program.  Data on mental retardation and developmental
disabilities were supplied by Charlie Lakin. 


   NONELDERLY PEOPLE WITH MENTAL
   RETARDATION OR DEVELOPMENTAL
   DISABILITIES
-------------------------------------------------------- Appendix II:5

Using data from wave 3 of the 1990 SIPP provided by ASPE researchers,
we estimated that approximately 670,000 people aged 18 to 64 need
assistance with at least one ADL or IADL because of mental
retardation or a developmental disability.  The ADLs and IADLs
assessed were the same as those discussed previously. 

Using data compiled by the Center on Residential Services and
Community Living at the University of Minnesota and provided by
Charlie Lakin, we estimated that 140,000 people with mental
retardation or a related condition live in institutions and an
additional 180,000 live in small community residential settings. 
These data encompass all persons under age 65, including children. 
Institutions are defined as facilities with 16 or more beds that were
designed specifically for the care of people with mental retardation
or developmental disabilities, as well as other psychiatric
facilities and nonspecialized nursing homes.  Small community
residential settings are facilities with 1 to 15 beds.  These data,
which are for 1993, were adjusted to represent residents under age 65
only, based on the percentages of elderly residents in these
facilities found in the 1987 National Medical Expenditure Survey. 
Not every state provided data for all years or all institution types;
some states provided data from earlier years. 


   NONELDERLY ADULTS WITH MENTAL
   ILLNESS
-------------------------------------------------------- Appendix II:6

The 750,000 nonelderly adults who need long-term care as a result of
mental illness include 140,000 adults in institutions and 610,000
living in the community.  We used data, provided by ASPE researchers,
from wave 3 of the 1990 SIPP to estimate that 610,000 people aged 18
to 64 need assistance with at least one ADL or IADL because of a
mental or emotional condition.  The activities assessed were the same
as for the population with mental retardation.  We derived the
estimate of institutionalized adults with mental illness by using
unpublished data from the 1990 Inventory of Mental Health
Organizations.  These data were supplied by the federal Center for
Mental Health Services and include adults aged 18 to 64 who have
severe mental illness.  The institutions inventoried include state
and county mental hospitals, private psychiatric hospitals,
Department of Veterans Affairs psychiatric organizations, residential
treatment centers, multiservice mental health organizations, and
general hospital psychiatric units. 


   ADULTS WITH ALZHEIMER'S DISEASE
   OR OTHER DEMENTIA
-------------------------------------------------------- Appendix II:7

We also used the data from wave 3 of the 1990 SIPP provided by ASPE
to estimate that approximately 550,000 people aged 65 and older
report needing assistance with ADLs or IADLs as a result of
Alzheimer's disease or another dementia.  The same activities were
measured for this population as for the populations with mental
illness and mental retardation. 


GAO CONTACTS AND STAFF
ACKNOWLEDGMENTS
========================================================= Appendix III

GAO CONTACTS

James C.  Musselwhite, Jr., Project Director, (202) 512-7259
Sara Koerber Galantowicz, Principal Evaluator, (313) 256-8037

ACKNOWLEDGMENTS

In addition to those named above, the following individuals made
important contributions to this report:  Eric Anderson reviewed
report drafts, Linda F.  Baker assisted with report writing, Cynthia
Bascetta provided project oversight, George H.  Bogart provided legal
review, Patricia C.  Bonini assisted with preliminary data gathering
and report writing, Connie J.  Peebles provided advice on population
data and reviewed drafts, and William Scanlon reviewed drafts and
provided advice on data analysis and presentation. 


RELATED GAO PRODUCTS
============================================================ Chapter 0

Long-Term Care Reform:  States' Views on Key Elements of
Well-Designed Programs for the Elderly (GAO/HEHS-94-227, Sept.  6,
1994). 

Long-Term Care:  Other Countries Tighten Budgets While Seeking Better
Access (GAO/HEHS-94-154, Aug.  30, 1994). 

Medicaid Long-Term Care:  Successful State Efforts to Expand Home
Services While Limiting Costs (GAO/HEHS-94-167, Aug.  11, 1994). 

Long-Term Care Reform:  Program Eligibility, States' Service
Capacity, and Federal Role in Reform Need More Consideration
(GAO/T-HEHS-94-144, Apr.  14, 1994). 

Long-Term Care:  Demography, Dollars, and Dissatisfaction Drive
Reform (GAO/T-HEHS-94-140, Apr.  12, 1994). 

Long-Term Care:  Support for Elder Care Could Benefit the Government
Workplace and the Elderly (GAO/HEHS-94-64, Mar.  4, 1994). 

Long-Term Care:  Private Sector Elder Care Could Yield Multiple
Benefits (GAO/HEHS-94-60, Jan.  31, 1994). 

Health Care Reform:  Supplemental and Long-Term Care Insurance
(GAO/T-HRD-94-58, Nov.  9, 1993). 

Long-Term Care Insurance:  High Percentage of Policyholders Drop
Policies (GAO/HRD-93-129, Aug.  25, 1993). 

Long-Term Care Reform:  Rethinking Service Delivery, Accountability,
and Cost Control (GAO/HRD-93-1-SP, July 13, 1993). 

Long-Term Care Case Management:  State Experiences and Implications
for Federal Policy (GAO/HRD-93-52, Apr.  6, 1993). 

Long-Term Care Insurance:  Actions Needed to Reduce Risks to
Consumers (GAO/T-HRD-92-44, June 23, 1992).  Reports on same topic: 
GAO/HRD-92-66, Mar.  27, 1992, and GAO/HRD-92-14, Dec.  26, 1991. 
Testimonies on same topic:  GAO/T-HRD-92-31, May 20, 1992, and
GAO/T-HRD-91-14, Apr.  11, 1991. 

Long-Term Care:  Projected Needs of the Aging Baby Boom Generation
(GAO/HRD-91-86, June 14, 1991). 
