The Forum
The Gerontologist
Vol. 47, No. 3, 271–279
Copyright 2007 by The Gerontological Society of America
Does Disparity in the Way Disabled Older
Adults Are Treated Imply Ageism?
Robert L. Kane, MD,1 Reinhard Priester, JD,1 and Dean Neumann1
Although the nearly one in seven Americans who
have disabilities share many characteristics, the attitudes toward and the programs, care models, expenditures, and goals for people with disabilities
differ substantially across age groups in ways that
suggest ageism. Expenditures per recipient are substantially higher for younger individuals with disabilities, largely as a result of more effective advocacy.
Programs that are rejected by younger people with
disabilities are considered mainstream for older
adults. As demographic, social, and economic circumstances change, preserving the programmatic
separation will become more problematic. Increased
competition for finite resources may motivate a closer
examination of commonalities across disabilities in
an effort to achieve greater equity.
Key Words: Disability, Long-term care, Medicaid
Disability is common across the age spectrum, but
society’s response differs substantially by age. Older
people are disadvantaged in terms of both the options offered them and the funds spent on them.
Expenditures per recipient are substantially higher
for younger individuals with disabilities, largely as
a result of more effective advocacy. This disparity
reflects a long history of viewing disability among
older adults as an expected concomitant of the aging
Address correspondence to Robert L. Kane, MD, University of
Minnesota School of Public Health, D351 Mayo (MMC 197), 420
Delaware Street SE, Minneapolis, MN 55455. E-mail: kanex001@
umn.edu
1
University of Minnesota School of Public Health, Minneapolis.
Vol. 47, No. 3, 2007
271
process. Older adults are seen as frail and vulnerable
people who need to be protected, whereas younger
individuals with disabilities accept risk as the price of
full social participation. Care options rejected by
younger people with disability (including both institutional and home care) are considered mainstream
for older adults. We suggest that these disparities in
spending and options represent a form of ageism.
What is ageism? Robert Butler, who coined the
term, defines ageism as ‘‘a process of systematic
stereotyping of and discrimination against people
because they are old’’ (Butler, 1975, p. 12). This
definition implies both an attitudinal component
(stereotyping and prejudicial attitudes, beliefs, and
conceptions of the nature and characteristics of older
adults) and a behavioral component (discrimination
against or inappropriate negative treatment of older
adults; Palmore, 1999). Throughout the long-termcare and social support systems, individuals with
similar levels of disability are treated differently
because of their age. But not all forms of differential
treatment based on age are inappropriate, and the
distinction between an age-differentiated behavior or
policy and discrimination can be subtle (Pasupathi &
Lockenhoff, 2004). Typically, age differentiation is
justified if it is based on physiological parameters
(e.g., expected survival or risk of adverse events),
whereas discrimination implies a deliberate effort
to exclude or to favor one group over another.
Structured forms of power, organization, and regulation in society may also inadvertently discriminate
against people in certain age groups (McMullin &
Marshall, 2001). We contend that the systematic
difference in the way older adults with disabilities
are treated relative to younger individuals with
disabilities constitutes ageism.
Ageism may also be viewed in terms of relative
power. Frail older adults are less likely to act on their
own behalf. Age-based organizations like AARP
have agendas that focus on more general goals that
affect a larger swath of the elderly population,
including retirement issues and medication coverage.
Studies sponsored by such groups that show large
majorities of older adults (89% in 2000) strongly or
somewhat agree that they would like to remain in
their current home for as long as possible (Bayer &
Harper, 2000) seem to be ignored when actions are
taken upon members of the frail subgroup, who are
labeled as vulnerable adults and reduced to a dependent status. In the most extreme cases, the older
person is ruled incompetent, denied rights, and
assigned a legal guardian.
Nearly one American in seven has a disability
(U.S. Census Bureau, 2004). Disability occurs across
all ages, and many etiological and societal commonalities are shared among disabled individuals.
People with all types of disabilities face similar access, health, economic, and social consequences. In
all age groups, individuals with disabilities are more
likely, relative to the overall population, to be poor
(Waldrop & Stern 2003), to use more health care
services (Hanson, Neuman, Dutwin, & Kasper, 2003),
to be without work (Stoddard, Jans, Ripple, &
Kraus, 1998; Waldrop & Stern 2003), and to receive
governmental financial assistance. Regardless of the
specific impairment or its cause, people with disabilities typically need one or more of a broad range
of health care, supportive services, or accommodations to address the myriad ways in which disabilities
impact their lives.
Cast in a civil rights framework, people with disabilities are ‘‘a discrete and insular minority’’ who,
as a group, ‘‘occupy an inferior status in our society,
and are severely disadvantaged socially, vocationally, economically, and educationally’’ (ADA Findings and Purpose, 42 USC 12101(a), p. 8). Viewing
differential treatment of individuals with disabilities
as a civil rights issue (i.e., as discrimination) gathered
steam throughout the 1970s and 1980s and culminated in 1990 with the passage of the Americans with
Disabilities Act, which draws heavily from previous
civil rights legislation and has been hailed by
supporters as a minority group approach to disability policy issues (Francis & Silvers, 2000).
A disparate set of federal, state, and local disability programs addresses the needs of individuals
with disabilities. The federal government alone has
more than 200 programs, spread across 20 different
agencies, designed specifically to provide financial
assistance or supportive services to various subsets
of individuals with disabilities (National Council
on Disability, 2005). Programs for individuals with
disabilities are distributed across three broad age
groups—children, younger adults, and adults aged
65 and older. There are important differences in
programs, care models, expenditures, goals, and at272
titudes toward people with disabilities across these
groups. People with similar types and extent of
disability may be treated differently and may be
entitled to different benefits depending on their age.
Uneven support reflects, in part, advocacy efforts
and the underlying attitudes about the subpopulations. Ongoing demographic, social, and economic changes may prompt a reexamination of
these differences.
The Impact of Disability
Estimates of the size of the U.S. disabled
population have relied on self-reports of disability
status, variously defined in terms of functional
impairments, restrictions on activities of daily living,
or the presence of other selected criteria (e.g., receipt
of federal benefits due to an inability to work;
Haveman & Wolfe, 2000). There is no consistent
definition of disability. The term is defined differently by a variety of private and public agencies and
organizations concerned with health and disability
issues. It is also defined in at least 67 places in the
United States Code (though many of the statutes
refer to definitions in other sections of the Code)
(Cherry Engineering Support Services, Inc., 2003).
Estimates of the number of individuals with
disabilities vary depending on the stringency of the
criteria used (i.e., the definition of disability) and the
nature of the survey questions. Each of the widely
cited national surveys of disability data, including
the American Community Survey, the Survey of
Income and Program Participation, the National
Health Interview Survey, the Current Population
Survey, the Decennial Census of the Population, and
the Medical Expenditure Panel Survey, defines
disability differently. Diverse survey methodologies
further contribute to dissimilar estimates (Gregory,
2004). The U.S. Census Bureau’s American Community Survey is among the most recent efforts to
provide accurate data on people with disabilities,
designed in part to correct flaws in Census 2000
estimates (Stern, 2004). According to the 2003
American Community Survey, 37.4 million civilian
noninstitutionalized Americans 5 years of age and
older (14% of that population) had one or more
disabilities (U.S. Census Bureau, 2004).
Elderly adults (aged 65 and older) experience
higher rates of disability than younger adults and
children. However, of all Americans who reported
any disability in 2000, nearly 56% were aged 16 to
64; elderly adults composed 36% (U.S. Census
Bureau, 2004).
The prevalence of disability in the population as
a whole is expected to grow. Some researchers
suggest that the rate of disability is declining
somewhat (Cutler, 2001; Spillman, 2004); however,
the rapid rise in obesity and associated health
problems has raised questions about this optimistic
The Gerontologist
scenario (Flegal, Carroll, Ogden, & Johnson, 2002;
Olshansky et al., 2005). The aging of the population
and the higher rate of disability among older adults
relative to the overall population suggest that the
total number of individuals with disabilities will
overwhelm any reductions in the forecasted rates
(Lakdawalla, Bhattacharya, & Goldman, 2004;
National Council on Disability, 2005). Even major
medical breakthroughs are unlikely to overcome the
force of aging (Aaron & Schwartz, 2004).
Disabilities are linked to substantial, though indeterminate, public and private expenditures. Total
expenditures in the United States for disability services, support, accommodations, and assistance are
thought to be substantial; precise figures, however,
do not exist. In 1986, total public and private disability expenditures in the United States were estimated at $169.4 billion, or 4% of the gross national
product (Berkowitz & Greene, 1989). More recent
estimates of total national disability expenditures are
not available, but the expansion of disability-related
services and accommodations during the past few
decades almost certainly means that national disability expenditures now exceed 4% of the GNP.
Perspectives on Disability
Disability has been viewed from several vantage
points with different policy implications. Older
adults have relied on a medical model whereby the
illness that produces the disability is the basis for
service eligibility (Oldman, 2002). The medical
model identifies disability as a problem of the
person, directly caused by disease, trauma, or
another health condition. Medical factors are seen
as centrally involved in creating the disability, and
medical care is an important component of responding to it. From the medical model’s perspective,
individuals with disabilities are entitled to benefits
that accrue from the consequences of their underlying impairments. Labeling their problems as
medical consequences provides a basis for covering
their costs under medical insurance (including
Medicare and Medicaid).
By contrast, the disabilities affecting younger
people are often the result of genetics or trauma.
They may not be susceptible to medical interventions. Hence, these younger individuals have primarily based their claims to entitlement on a civil
rights argument derived from a social model of
disability (J. Morris, 1997). Instead of considering
disability as ‘‘the lack of some mental, physical, or
emotional ‘tool’ which most other people can call
upon in addressing life’s tasks’’ (National Council on
Disability, 1986, p. 587), the social model posits
disability as resulting from a disabling environment.
One version of the social model views disability
solely as a social construction. More nuanced
versions assert that disability begins with a medical
Vol. 47, No. 3, 2007
273
pathology but also represents the negative aspects of
the dynamic interaction between a person’s health
condition and that person’s social and physical
environment (Jette, 1999; Nagi, 1969). Some disability activists have tried to extend this social argument
to the situation of older adults with disabilities, often
those with disability who have aged. In the main,
however, older adults and their advocates have not
bought into this conceptual framework, perhaps
because they do not see the same urgency to participate actively in the community.
By focusing on the interaction between the environment and a health condition, not just the health
condition itself, the social model rejects the notion
that disability is fundamentally an attribute of the
individual, maintaining instead that public attitudes,
stigma, stereotypes, and how society deals with and
responds to a person’s impairment are fundamental
to the problem. According to this model, the appropriate response includes eliminating ‘‘the attitudinal
and institutional barriers that preclude persons with
disabilities from fully participating in society’s mainstream’’ (Silverstein, 2000, p. 1695). The Americans
With Disabilities Act was specifically designed to
address those barriers.
The social model of disability reinforces the
notion that individuals with disabilities share important commonalities. Disabled people of all ages
need, for instance, access to information to support
choice and control; accommodations to access work,
leisure, and family; financial assistance; affordable
housing; and preventive, diagnostic, and therapeutic
health care services to ensure a basic level of health
and safety. Similar types of disabilities occur across
all age groups; people of any age can have physical
disabilities, cognitive deficits, or mental illness.
Regardless of a person’s age, the need for accommodation, access, care, or services can be temporary,
long term, or lifelong. The common denominator is
the effect of the impairment or disabling condition
on the individual’s participation in normal daily
activities. All individuals with disabilities require,
albeit to varying degrees, assistance, accommodations, or compensatory services.
Differences in Responses to Disabilities
Despite the commonalities shared by individuals
with disabilities, the responses to disabilities in diverse populations vary widely in legislation, funding,
administration, and services (Burkhauser & Daly,
2002). Similar levels and types of disability are dealt
with very differently across different age groups.
Whereas cognitively impaired younger people, for
instance, are encouraged to live independently and
to assume as much responsibility as possible, older
adults with dementing illnesses are viewed as
needing regular supervision, often in institutions.
Yet cognitive disability among the young and the old
is not the same. Although some individuals with
cognitive impairment may be educated and improve
their function over time, dementia’s clinical course
features continual decline. Nonetheless, cognitive
impairment in older adults is often the basis for
institutionalization, whereas younger individuals are
mainly managed in the community. A substantial
part of older adults’ heavy use of nursing homes has
been traced to active reliance on the medically needy
category of the Medicaid program, whereby the
predictable costs on a nursing home stay make
determining eligibility easier (R. A. Kane, Kane, &
Ladd, 1988).
The dominant model of disability that is adopted
by a given population with disabilities largely determines the rationale for demanding services available
to that population. If disability is viewed as the result
of illness, the primary goal is cure or amelioration
(e.g., through rehabilitation); care is a secondary
target, mainly in a compensatory model where
services are designed to compensate for identified
dysfunction. Peoples’ entitlements to care are based
on the extent of their impairment. Framing the
problem of disablement instead as a product not of
the physical or mental impairment per se, but of the
social and environmental barriers faced by individuals with impairments, transforms the basis of
viewing the different treatment of those with disabilities in employment, access to public services,
and other aspects of daily life into a form of discrimination and, in consequence, within the realm of
civil rights protections. Viewing disability discrimination as a civil rights problem requires a model of
disability that identifies the barriers to disabled
individuals’ integration into the community as due,
at least in part, to social practice and policies. In
contrast, identifying disability solely as impairmentrelated dysfunction, as the medical model does,
‘‘undercuts the propriety of construing access for
the disabled as equal protection for civil rights’’
(Francis & Silvers, 2000, p. xvi)
Younger adults with disabilities (including some
who are in their 40s and 50s) maintain that disabled individuals have been unfairly denied access to
many of life’s activities by virtue of their disabilities
(Harris Interactive, 2004). They view disabled individuals as a segregated minority who deserve equal
protection under the law. They reject traditional
agency-based and medically oriented home care
and insist instead on personal care attendants who
can provide a broader range of services and thus
facilitate their full participation in social commerce
(Simon-Rusinowitz & Hofland, 1993). Conversely,
older adults with disabilities remain staunchly in the
medical model (Oldman, 2002). They and their
caregivers share the belief that disability results
from underlying disease that is a natural consequence
of aging. When care decisions need to be made, family
members, health professionals, and sometimes even
older adults themselves still consider responses such
274
as institutionalization, which have been rejected by
young disabled individuals, as appropriate for older
individuals. This discrepancy likely reflects a difference in underlying expectations for these populations.
Some argue that a disparity is not a prejudice if
the group affected endorses the choice as a preference. Younger people with disabilities would counter
that older people have simply been brainwashed into
accepting the inevitability of institutional care.
Ironically, when surveyed, older people living in
the community express a strong aversion to nursing
homes (Bayer & Harper, 2000), but when they
become frail these negative feelings are overridden.
Disability is partly a social construct, shaped by
the beliefs of individuals with disabilities and their
advocates as well as society at large. Advocates of
children with disabilities actively pursue an agenda
of inclusion (mainstreaming), insisting that disabled
children need, and deserve, to be a part of normal
childhood activities. Younger adults with disabilities
likewise demand accommodations and compensatory assistance that permit them full participation in
social and economic activities and the same choices
and control in their everyday lives that others in their
age group aspire to have. They reject care or services
that, if accepted, would keep them apart from the
rest of society (R. A. Kane, 2006). Nonetheless, some
adults with disabilities, including many in the deaf
community, value their separateness from society. As
one example, Laurent, South Dakota, is a town
expressly created for people who sign: Its developers
envision it as ‘‘a place where our nation’s signing
community can gather together to live, work, play,
and worship in comfort and beauty’’ (Davey, 2005,
p. A1). Older adults, in contrast, appear to be more
accepting of activity limitations due to disability
(R. L. Kane & Kane, 2001).
Therapeutic providers have created their own
belief systems, sometimes in concert with consumers
and sometimes at odds with them. Those who work
with disabled children actively support a variety of
supportive and rehabilitative services that are expected to allow these children to assume more independent roles as they mature. Younger adults with
disability often find themselves at odds with medical
providers who seem fixated on addressing the underlying disease process instead of simply allowing
the disabled individuals to get on with their lives.
In contrast to the two younger age groups, both
providers and older consumers have accepted a much
more limited, pessimistic view of disability in older
adults (Adams et al., 2002). Older adults are seen as
vulnerable and hence unable to achieve any meaningful measure of independence. They are expected to
make do with care that maintains them in a dependent, subordinate role. Old age is assumed to
imply inevitable decline (Lynne, 2004). Successful
aging is associated with coping through reduced
expectations and greater focus (Baltes & Baltes,
1990; Lang, Rieckmann, & Baltes, 2002).
The Gerontologist
Disability programs, particularly publicly funded
programs, reflect these differences in attitudes and
expectations across the age groups. In many
programs, care approaches that have been rejected
by younger individuals with disabilities are still
promoted for older adults. State Medicaid programs,
for example, historically supported the segregation
of individuals with disabilities into institutions,
including nursing homes and intermediate care
facilities for people with mental retardation. Political
activism (particularly on behalf of children and
young adults with disabilities), the legally recognized
‘‘right to treatment’’ of institutionalized individuals,
expanded use of antipsychotic drugs, and other
developments spurred the deinstitutionalization
movement in the 1960s and 1970s. Since the early
1980s, states have taken advantage of amendments to
the Medicaid statute to develop and fund a variety of
alternatives to institutional care that enable beneficiaries with disabilities to live in, and thus remain
integrated with, their communities. Most notably,
Medicaid’s Home and Community-Based Services
(HCBS) Waivers (commonly referred to as Section
1915(c) waivers, after the section of the Social
Security Act under which they are authorized) allow
states to develop programs for targeted populations
to decrease their reliance on institutional care and
shift to community-based services.
The waivers both encourage innovative approaches and limit states’ financial risk. Unlike the
Medicaid program itself, which requires states to
provide uniform benefits to all enrollees, HCBS
waivers allow states to vary the types of services and
individuals served. Waivers can be designed for separate groups of people (e.g., individuals with a traumatic brain injury) and provide services not offered
under the state’s regular Medicaid plan (U.S. General
Accounting Office, 2003). The popular HCBS waivers
have dramatically reallocated Medicaid long-termcare expenditures. Although the distribution of these
expenditures varies widely across states—reflecting
differences in the type, number, and amount of
services provided under waivers in different states—
the clear trend is toward more HCBS spending.
Between fiscal year (FY) 1991 and FY 2004, the share
of Medicaid long-term-care spending for institutional
care declined from 86% to 64%, whereas the share
spent for home- and community-based care grew
correspondingly (Burwell, Sredl, & Eiken, 2004).
This shift in expenditures was spurred by the
Supreme Court’s 1999 Olmstead decision, under
which
states are required to place persons with mental
disabilities in community settings rather than in
institutions when the State’s treatment professionals
have determined that community placement is
appropriate, the transfer from institutional care to
a less restrictive setting is not opposed by the
affected individual, and the placement can be
Vol. 47, No. 3, 2007
275
reasonably accommodated. Olmstead v. L.C.
(1999) 527 U.S. 581 (p. 583)
The federal New Freedom Initiative, begun in 2001,
further supported this trend with Real Choice
System Change Grants aimed at helping states
‘‘develop enduring infrastructures that support
people of any age who have a disability to live
and participate in their communities’’ (Medicaid
Program, 2001. p. 28,183).
The Olmstead decision and the New Freedom
Initiative apply to disabled individuals of all ages and
with all types of disabilities, and there are some
indications of convergence across disability populations. Consumer direction, for example, is explicitly
incorporated into service programs in many states or
is included in distinct demonstration projects such as
Cash and Counseling (Mahoney, Simon-Rusinowitz,
Loughlin, Desmond, & Squillace, 2004). The Deficit
Reduction Act of 2005 will permit states to offer
(beginning in January 2007) self-direction for personal assistance services without needing to get
a waiver. Spearheaded by the disability community,
the consumer-directed approach was initially targeted more often at younger individuals with disabilities than at older adults (DeJong, Batavia, &
McKnew, 1992). More recently, however, consumerdirection programs have been used with older
beneficiaries as well (Benjamin, 2001; Foster, Brown,
Phillips, & Carlson, 2005). Thus, for instance, as of
2002, nearly three fourths of the enrollees in the Cash
and Counseling demonstration project in Arkansas
(one of the demonstration’s initial three states) were
aged 65 or older (Medstat, 2002).
But the overall trend toward home- and community-based care has been much more pronounced
for some populations with disabilities than for others.
By FY 2005, about 58% of national Medicaid longterm-care expenditures for enrollees with mental
retardation or developmental disabilities (MR/DD),
nearly all of whom were under age 65, went to homeand community-based services and the remaining
42% to institutional-based care (Eiken, Burwell, &
Selig, 2006). For older adults and people with physical
disabilities, the division in Medicaid long-term-care
expenditures was 27% for home- and communitybased care and about 73% for institutional (i.e.,
primarily nursing home) care (Figure 1). An analysis
of Medicaid’s HCBS waiver programs found that
MR/DD beneficiaries represented 39% of participants nationwide in 2001 and consumed nearly 75%
of total waiver spending, whereas older adults and
people with physical disabilities, who represented
58% of all waiver enrollees, received only 24% of
total expenditures (Kitchener, Ng, Miller, & Harrington, 2005). This expenditure ratio has remained
stable: In FY 2005, 75.3% of HCBS waiver expenditures were for long-term-care supports for individuals
with MR/DD, and 23% were for older adults and
individuals with physical disabilities (the remainder
Figure 1. Distribution of Medicaid Long-Term-Care Expenditures by Major Population Groups: FY 2005.
was for other populations, such as people with HIV or
AIDS and individuals with traumatic brain injury)
(Eiken et al., 2006).
Similar disparities are evident in the 13 states that
have separate HCBS waivers serving only people
aged 65 and older. Total expenditures in FY 2004 for
Minnesota’s Elderly Waiver (eligibility restricted to
ages 65 and older), for example, were $116.6 million,
or less than 11% of the state’s total HCBS waiver
expenditures of $1,097 million. Likewise, of Connecticut’s $576 million HCBS waiver expenditures in
FY 2004, only $90 million, or 15.6%, was for its aged
waiver (Eiken, Burwell, & Walker, 2005).
The disparity across disability groups can be seen
vividly using state-level analyses that permit comparisons in terms of expenditure by recipient. Figure
2 presents the data for eight states for which we have
tracked the Medicaid-expenditure patterns for various programs. The data are presented as the ratio of
MR/DD spending to that on aging and disabled
adults in 2004. The first two sets of columns address
overall and per-recipient spending for institutional
care; the latter two present overall and per-recipient
spending for home- and community-based care.
With the exception of Arkansas, the ratio of total
spending on institutions was less than 1. In contrast,
the spending per recipient for institutional care was
much greater for MR/DD clients. This difference
likely reflects the small numbers of institutionalized
MR/DD clients, for whom the cost per case is high.
For HCBS, overall spending (a function of per-client
costs and numbers of clients) was higher for MR/DD
clients in six states, and spending per client was 2 to
5 times higher for MR/DD than for older clients.
Social Security income mitigates the discrepancy
in Medicaid payments between older adults and
younger individuals with disabilities. Older adults
are more likely to receive Social Security and become
eligible for Medicaid under the Medically Needy
provision, whereas younger people are generally
categorically eligible by virtue of their disabilities. As
a result, Medicaid expenditures for older adults may
not commence until their Social Security income has
been spent. The net Medicaid expenditure may thus
276
be less. In 2005, the average annual Social Security
payment was about $10,800. Across our eight states
the average annual waiver payment for elderly and
disabled adults was $12,229, whereas the payment
for MR/DD was $36,046. Social Security might
explain only a part of that difference.
The pattern of disparity in disability expenditures
changes substantially if Medicare is added into the
equation. But this computation has not been, and
with current data limitations perhaps cannot be,
accurately performed. Medicare includes three
groups of enrollees: (a) adults aged 65 and older,
(b) individuals younger than age 65 who are
permanently disabled and have received Social
Security disability payments for at least 2 years,
and (c) individuals with end-stage renal disease.
Although enrollees in the latter two groups, by
definition, have a disability, not all of their Medicare
expenditures are spent on account of their disability.
Some Medicare expenditures may instead go for
acute care or other health conditions that have
nothing to do with the enrollee’s disability, and it is
not clear if these should count as disability
expenditures. Estimating disability expenditures for
Medicare enrollees aged 65 and older with a disability raises different concerns. No Medicare database
uses disability as an identifying marker; thus, a proxy
measure (e.g., two or more activity of daily living
dependencies) would be needed to identify elderly
Medicare enrollees who have a disability. Once this
cohort of enrollees is identified, the question arises
whether all of their Medicare expenditures should be
counted or only those expenditures that can be
attributed or linked directly to their disability.
The Role of Advocacy
In a democracy, advocacy plays an important role
in galvanizing support for a program or a group.
Much of current disability policy has been shaped by
the actions of advocates. Most disability advocacy is
linked to a single, specific disease or syndrome. Only
a few cross-disability and broad-based advocacy
The Gerontologist
Figure 2. Ratio of Expenditures for MR/DD to Aging and Adult Services in Eight U.S. States, 2004.
organizations, such as the American Association of
Persons With Disabilities, the National Organization
on Disability (NOD), and AARP, represent more
heterogeneous groups. Although most advocacy is
diagnosis and population specific, ad hoc coalitions
of disability organizations periodically form at the
state and federal government levels, but they are
rarely inclusive and usually disband once their
limited purpose has been achieved.
The advocacy situation differs for young and old.
For children with disabilities, the primary advocates
are their parents, who have a long-standing interest
in the outcome, because the child will be around for
a considerable period of time. Young adults advocate
for their cause throughout their lifetimes. The
situation for older adults is different. Their period
of disability is typically much shorter. Their natural
advocates are their children. Although children of
older adults with disabilities may become actively
involved in advocacy activities during the period of
active care, they are less likely to sustain this
involvement upon the death of the parent. Moreover,
personal histories may play a strong role.
Confronting Ageism
The combination of an aging population and
a growing unwillingness to spend money on social
Vol. 47, No. 3, 2007
277
programs seems inevitably to lead to a competition
between younger and older individuals for a constrained resource pool. Such a conflict will raise
questions about the fair distribution of finite
resources, including concerns about efficiency and
attention to current anomalies. For example, Medicare represents positive ageism (Palmore, 1999); it
provides near universal coverage for elderly adults
with disabilities, whereas more than 5% of younger
adults (aged 18–64) with disabilities are without
public or private health coverage (Hanson et al.,
2003). There is some potential for efficiencies by
emphasizing commonalities in needs and interests
across age groups and by reducing programmatic
fragmentation. From a social justice perspective, it is
not immediately apparent why different groups of
people with basically similar disabilities should be
treated differently. All age groups should be offered
comparable services; institutions considered inappropriate for some should not be thrust on others. A
more equal distribution of resources may be more
appropriate, in light of the commonalities shared by
individuals with disabilities across all ages.
Different scenarios for the future are possible. In
one scenario sufficient social resources are available
to provide adequately for all who need care. But
another, currently prevalent scenario looks toward
restricted resources and the competition for them
(President’s Council on Bioethics, 2005). Some
anticipate that calls for more efficiency in long-term
care will lead to greater use of community care, thus
changing the current press for institutional care, but
it is not yet clear that community care will really save
money (increased demand may offset any per-person
savings) or dramatically cut back on institutional
care. If the competition for Medicaid and other
public resources becomes more intense, more attention will inevitably be devoted to the current
disparities in funding and program design.
Having different programs and age-differentiated
policies does not necessarily imply ageism (discrimination). Neither does putting everyone into the
same program necessarily imply equality. One way
to reduce ageism in long-term-care policy and
programs would be to promote individual resource
management for disability program enrollees, usually referred to as consumer-directed care. If everyone could agree that people can have different
values, needs, and goals at various stages of their
lives, giving money directly to the disabled individuals would allow them to spend it how they want.
Presumably, preferences would not be used to set
payment rates. Rather, consumers would determine
how funds allocated on the basis of consistently
assessed needs could be spent.
Another strategy would be to consolidate all
programs for individuals with disabilities, regardless
of age or etiology, into a single state agency. Several
states have pursued such a strategy, including
Vermont, Washington, and Wisconsin. Washington’s Aging and Disabilities Services Administration,
for example, was formed in 2003 with responsibility
for (a) long-term services and supports for elders,
adults with physical disabilities, and people with
developmental disabilities; as well as (b) Medicaid
financial eligibility functions. Consolidating formerly
separate agencies into a single governmental unit
was meant to promote a unified mission, shared
values, and common strategies (such as eligibility
assessments and quality improvement initiatives)
across all disability programs. An implicit goal was
to more closely align disability policy and programs
that serve populations of all ages and with all types
of disability. Although the approaches across groups
would not necessarily be identical, the contrasts
would become more evident.
Although disability policy should encourage independence for all people with disabilities, it should
not abandon social responsibility or force the same
solutions on individuals with varying needs and
desires. Differences across disability programs and
services reflect not only historical and perhaps
theoretical differences, but they may also respond
to important distinctions in needs, values, and
priorities of different groups of individuals with
disabilities. Thus, different groups may not warrant
strictly equal responses. Advocates of younger
people with disabilities argue that the fact that one
group of citizens with shared interests and common
278
needs has successfully engaged the political process
to acquire economic and other benefits specific to
those on whose behalf they advocate does not by
itself mean that the spoils of their labor should be
seen as a disproportionate or unfair share. Competing (fairly) in a world of finite resources is not only
inevitable; it reflects a basic democratic principle.
Other groups should be free to do the same and some
do, with varying degrees of success.
Conclusion
There is substantial evidence that older and
younger adults with similar degrees and types of
disability are treated differently in terms of the options for service they have available and the amount
of money spent on them. The question is whether
these differences in treatment represent ageism, even
if they reflect beliefs held by both professionals and
clients who view different expectations as a concomitant of different life stages. This distinction is more
complicated when the party potentially being
discriminated against shares the dominant values.
Acquiescence does not imply fairness. One of the
lessons of the civil rights movement was that ingrained social ideas are not necessarily correct. Once
the underlying premises were challenged, discrimination was recognized as invalid.
However, fairness need not mean one size fits all.
Such an approach could inhibit the development
of more appropriate strategies for redressing the
impact of disabilities in these different groups.
There is insufficient evidence about the effectiveness
of various strategies to address cost-effectiveness
among different target groups, and some of the
outcomes are themselves amorphous. Satisfaction
and even quality of life can be influenced by
expectations, which, in turn, are shaped by social
beliefs (Rust & Oliver, 1994).
Emphasizing commonalities is not a new idea.
Three decades ago, R. Morris (1980) proposed reorganizing welfare programs along functional lines
across constituencies. He proposed large organizations that could handle a variety of different types of
clients who required similar services. Neugarten (1982)
argued against older people’s entitlement to special
benefits solely because they were old. She too favored
a common set of eligibility criteria based on need.
Now the shoe is on the other foot; older adults are
receiving disproportionately less. Older individuals
should be able to get a full range of services and
adequate support. Whether or not it is called ageism,
the gap persists.
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Received March 29, 2006
Accepted November 27, 2006
Decision Editor: Linda S. Noelker, PhD