By Barbara Gay, Ruth Katz, and James H. Johnson Jr.
As with the healthcare system, the
long-term-care “system” (such as it is) in the United States is characterized
by racial disparities in financing, access, quality, and service delivery.
Older African Americans in particular experience challenges even before any
need for long-term care (LTC) emerges. Consider the stark differences, as
follows:
·
Older African
Americans have lower net worth. In 2013, the median net worth of households
headed by white individuals older than age 65 was $255,000. The median net
worth of households headed by older African American individuals was $56,700
(Board of Governors of the Federal Reserve System, 2013).
·
Race and ethnicity are
highly correlated to poverty in the population of people older than age 65.
Five percent of older white men and
·
10 percent of older
white women live below the poverty threshold. In contrast, 17 percent of older
African American men and 21 percent of older African American women live below
the poverty threshold (Proctor et al., 2016).
·
Older African
Americans are less likely to have accumulated wealth over the course of their
working lives and are experiencing a “retirement crisis.”
·
African Americans
generally experience disability at earlier ages than do white Americans.
·
Few people own
long-term-care insurance policies, but differences persist. Thirteen percent of
white individuals older than age 65 had such policies in 2014 compared to 3
percent of African Americans (Johnson, 2016).
We have a long way to go to ensure equity
along a number of dimensions. When considering access to and quality of
long-term care for older people, it is no different—and should not be—for
African Americans. Policy makers contemplating long-term-care financing reform
must ensure that disparities are not perpetuated in any reformed system; they
must address racial disparities as they work on long-term-care reform.
Federal civil rights laws, including the Americans
with Disabilities Act, the Fair Housing Amendments Act of 1989, and the Fair
Housing Act of 1968 prohibit discrimination on the basis of race, color,
national origin, or disability, among other protected categories. But despite
decades of civil rights laws mandating desegregation of housing and other
services, the legacy of our country’s long history of racial discrimination
remains evident across the spectrum of aging services—from affordable housing
to home- and community-based services to nursing homes.
Today’s Long-Term Care “System”—a Dearth of
Options
Most people who need help with activities of
daily living receive that help from informal caregivers—family members and
friends. For those who need formal or paid long-term-care services, people who
can pay out of pocket have an array of choices. Many opt to bring personal care
and other services into their homes; this option can cost approximately $48,000
to $50,000 per year, depending upon the amount and type of care needed
(Genworth, 2018).
Other choices include continuing care retirement
communities, more recently christened “life plan communities” (LPC); and life
plan communities at home (non-residential membership in LPCs) that many LPCs
have started to serve non-residents; assisted living; the Village Movement;
and expanded availability of home- and community-based services. Because of the
diversification of models, the cost of these newer forms of long-term care
varies greatly. Moving into a life plan community, for example, can involve
entry fees exceeding $100,000, with monthly fees of $2,000 and above. People
who have the ability to pay these types of costs frequently hire case managers
or care coordinators to help them find and coordinate services.
For older adults with minimal income and
assets besides their homes, including people who have spent all their available
money on health and long-term care, the state-federal Medicaid program is an
option, but program choices are limited, and typically cover nursing home care
or, with limitations, some home- and community-based services.
Access to the newer forms of aging services
listed above generally requires greater personal financial resources, with more
options available to people with more disposable income. Unsurprisingly, the
private market has developed services and competes to provide them for people
who are best able to pay. Those with less disposable income have fewer
long-term services and supports (LTSS) choices and have had to depend more upon
informal family caregiving and nursing home care covered by Medicaid.
LTC Access and Quality Disparities
Older African Americans report more “challenges
with a range of activities of daily living (ADL) and instrumental activities of
daily living (IADL) . . . . [including] difficulty dressing, vision
difficulty, difficulty going out, physical difficulty, and difficulty
remembering,” according to James H. Johnson Jr. and Huan Lian, in their
article published in Journal of Housing for the Elderly (Johnson and Lian,
2018). These older adults are least likely to be able to age in place and are
most likely to need LTSS as they continue to age—in all likelihood in an institutional
setting, unless viable strategies are devised to update and modify their
dwelling units and broader living environments.
Johnson and Lian also discuss in their article
the legacy of employment and housing discrimination African Americans have
faced, as a result of which African American older adults are less likely than
other ethnic groups to have accumulated wealth. In addition to having fewer
resources to pay for home modifications to age in place, African American older
adults have less financial ability to pay privately for other LTSS.
Amid the debate about long-term-care financing
reform, policy makers must concurrently address racial disparities that persist
in the way LTC services are financed and delivered. The LTSS field faces a
number of questions relating to racial disparities in services, as follows:
·
Historically, African
Americans have had lower incomes and shorter life spans than white Americans.
If the wealth gap narrows and longevity among African Americans increases, as
current trends suggest, will they have access
·
to the same LTSS
options available to white Americans?
·
To what extent will
efforts to improve LTSS options for all Americans eliminate disparities in
access to services for African Americans?
·
And what additional
steps should policy makers engaged in long-term-care financing reform take to
ensure that older people of all races, ethnic groups, religions, and other
categories have equal access to the LTSS they need, in the settings they
prefer?
Differences in Quality of Care
Racial disparities in nursing home care are
well-documented. According to one study by Barton Smith et al. (2008), African
Americans used nursing home care at a higher rate than did white Americans,
“finally closing a racial gap in use rates . . .” However, the authors also
found a new problem: the lower quality of care in nursing homes occupied by
African Americans. They noted that African American nursing home residents
were more likely to live in nursing homes cited for serious deficiencies in
care and in homes that had been terminated from the Medicare and Medicaid
programs. According to the authors’ findings, African American nursing home
residents were more likely than whites to live in homes with lower ratios of
staff to residents, and with the preponderance of residents being covered by
Medicaid.
Another study found that quality-of-care disparities
“appear to be related to racial and socioeconomic segregation of
long-term-care facilities as opposed to within-provider discrimination”
(Konetzka and Werner, 2009).
Such disparities may be linked to the
resources found (or not) in different neighborhoods. An October 2018 study
revealed that residents of poorer communities had less access to nursing homes
with high star ratings, and speculated that “[t]hese areas may lack sufficient
resources to adequately staff the facility and deliver care that meets industry
quality standards” (Yuan et al., 2018).
However, a report from the American Association
of Homes and Services for the Aging (now LeadingAge) cautioned, “It is
inaccurate and unfair to characterize all [inner city] facilities as places of
poor care and discrimination” (American Association of Homes and Services for
the Aging, 2009). The report pointed out that nonprofit nursing homes in inner
city areas often have decades-long records of valuable service to their
communities.
As an example, the report cited Eliza Bryant
Village, which was established by the daughter of a freed slave in 1896 to
provide African Americans with the long-term care they were unable to access
elsewhere in the city due to segregation (American Association of Homes and
Services for the Aging, 2009).
Still, the report noted the challenges faced
by nursing homes operating in areas of scarce resources, serving people with
complex health, financial, and social needs. With Medicaid as the primary
payment source, these nursing homes are “less financially secure,” they have
difficulty recruiting professional staff, and the front-line staff they are
able to recruit in their neighborhoods may need training in life skills, as
well as in resident care. The residents these homes serve may never have
received appropriate health treatment and often come in with untreated chronic
diseases such as diabetes, AIDS, or chemical dependency.
Assuring high-quality nursing home care and
the financial resources to pay for it are larger questions still facing the
LTSS field. Initiatives addressing quality of care and reimbursement for care
covered by Medicaid and other public programs should help to alleviate
disparities in the quality of nursing home care available to African Americans.
Conversely, policy makers should consider the disparate impacts that the
failure to address these central issues have upon low-income African Americans
who have few other resources to cover essential LTSS costs. To the extent that
older African Americans have fewer resources to pay privately for alternatives
to nursing home care, failure to enforce nursing home quality standards and to
adequately reimburse nursing homes for services provided to residents covered
by Medicaid will leave them with substandard nursing home care.
Achieving the monumental goal of assuring the
availability of financing for LTC services will help to solve these disparities
issues, but will not ensure that African Americans (and others) have equal
access to high-quality services that meet their needs. Creative solutions are
urgently needed to ensure that our most vulnerable African American older
adults are able to receive proper care and live out their remaining years of
life with dignity.
Rebalancing Medicaid—Does This Help
Address Disparities?
Reforming Medicaid in a strategic manner could
help address disparities. Efforts to eliminate so-called institutional bias in
Medicaid coverage of LTSS date back as far as 1999, when the U.S. Supreme
Court held in Olmstead v. L.C. that states must provide services to people with
disabilities in community-based settings if such services are appropriate,
accepted by the client, and can be reasonably accommodated.
The Affordable Care Act established several
initiatives to help states balance Medicaid LTSS programs between nursing home
care and home- and community-based services. These initiatives included the
State Balancing Incentives Program, Community First Choice, Money Follows the
Person, Real Choice Systems Change Grants, and others.
The goal of these initiatives is to provide
LTSS that are person-driven, with maximum consumer choice over types of
services and providers. Also, Medicaid rebalancing seeks to ensure that LTSS
are provided in culturally competent ways.
To the extent that African Americans may rely
more on Medicaid for LTSS, states’ rebalancing efforts should give them a
wider selection of and more effective choices of services and providers.
Medicaid rebalancing is an ongoing process; according to an October 2018 survey
of state Medicaid directors, forty-eight states were planning to expand
coverage of home- and community-based services under their Medi-caid
programs in 2018–2019 (Gifford et al., 2018).
In addition, the difficulties many older African
Americans encounter in remaining in the community must be recognized and
addressed. African American older adults are more likely to live in the oldest
housing stock, which can require the most extensive and expensive modifications
to accommodate disabilities related to aging. They also are more likely to live
in rented and-or multi-family housing, which generally cannot be modified, and
they are more likely to spend in excess of 30 percent of their incomes on
housing costs (Johnson and Lian, 2018).
The Johnson and Lian study examines household
generational make-up, finding that older African Americans are less likely to
be living with spouses and more likely to be living with children and-or
grandchildren. For some older African Americans, these family arrangements
mean more available helpers and caregivers, but others take responsibility for
raising grandchildren and supporting adult children and other relatives.
The study’s authors make a number of recommendations
to help the most vulnerable African Americans to age in place, including
federal guidance and partnerships to make housing and neighborhoods more
age-friendly; streamlined processes for federal home repair loans; training and
a route to payments for family caregivers; and funding through the Center for
Medicare & Medicaid Innovation to demonstrate best practices for helping
vulnerable older people age at home.
Will Available Funding Address Disparities?
Policy makers engaged in LTC financing reform
should not assume that equitable financing alone will solve inequities that are
generations old. At the upper financial level of LTSS options, LPCs offer the
surest level of security against changing physical and mental condition. The
typical LPC provides a range of aging services, from independent living
through long-term nursing care, for an initial entry payment and monthly fees.
More recently, different models have developed under which residents may access
services more on an á la carte basis than a pre-paid basis. Several
communities now offer Continuing Care at Home programs, where individuals do
not move onto a campus. These services are paid for out of pocket and involve
enrollment and monthly fees that vary according to services provided.
Historically, it has been unusual to find African
American residents in LPCs. This could in part be due to the large initial
investment to move into these communities, which is a barrier for many
consumers. But even without income differences, disparities still may persist.
In Johnson and colleagues’ study, Race and
Residence in Continuing Care Retirement Communities/Life Plan Communities, the
authors interviewed six African Americans who were LPC residents or who
planned to move into one. The interviewees discussed factors that attracted
them to LPCs—the chance to age in place, amenities, activities, social
opportunities, and quality of life. They noted some drawbacks, however,
including the perception that some white residents viewed African Americans as
representatives of their race and the burden of being the first African
Americans to move into a community (Johnson Jr., Parnell, and Johnson, 2018).
Commenting on barriers to diversity in LPCs,
one interviewee suggested that African Americans generally have a different
cultural attitude toward long-term care, one emphasizing family caregiving, and
viewing nursing home care as a last resort.
Other interviewees cited a cultural expectation
among African Americans that older generations with available financial
resources would assist younger family members and would leave inheritances for
future generations (Johnson Jr., Parnell, and Johnson, 2018). According to this
view, the cost of a LPC could exhaust resources that might otherwise be
available to give younger family members a strong start in life.
Considerations and Approaches to LTC
Reform
New public or private approaches to solving
the problem of how to pay for long-term care, even if they appear to create a
level playing field, may inadvertently perpetuate long-standing disparities
and biases that are built into today’s healthcare and LTC systems. To ensure
equal access, choice, and quality, policy makers discussing long-term care
financing reform should keep in mind the following considerations:
·
In order to eliminate
disparities in LTSS, it is essential to first recognize that they exist and
why.
·
Disparities have
resulted from long-standing discrimination in the delivery of services and a
narrower array of choices available to individuals with lower incomes. Increasing
choices available to lower-income people may alleviate disparities, but there
also must be flexible financing to enable beneficiaries to effectively exercise
their choices. It may be necessary to build in incentives to increase the
variability and availability of service providers in a community.
·
Targeted efforts are
needed to ensure a wide array of services available in African American
communities, that information about them is accessible to community residents,
and that marketing and promotion of these services comply with federal civil
rights laws.
·
For cultural and
financial reasons, African Americans may rely more heavily upon informal family
caregiving more than do other population groups. In low- and middle-income
families, caregivers often must continue paid employment; effective public
policy would build in ways to support such caregivers in keeping their family
members home. Adult day service programs and other respite services, for
example, can be instrumental in enabling family caregivers to remain employed;
expanded eligibility and coverage would be beneficial.
·
It is important to
analyze closely any assumption that individuals with Medicaid coverage do not
need additional supports to access the same benefits and choices that people
are getting under a new program. It is not uncommon for discussions of LTSS
financing reform to focus on the “middle market,” assuming that Medicaid will
serve low-income people, and high-income people may be able to cover
themselves.
·
Short of creating a
new LTC financing program, significant reforms in Medicaid coverage for LTC
could help to address disparities. To the extent that older African Americans
have lower incomes than older whites, they may be more reliant upon Medicaid
and may have greater difficulty finding quality care. Proposals to block grant
Medicaid or impose per capita caps on federal funding would have a disparate
impact on older African Americans who must rely upon Medicaid to finance
essential LTSS. And effective quality oversight of LTSS in all settings is
especially important for lower income populations that may not have the
personal financial resources to “vote with their feet” to choose
·
different service
providers.
·
Given that many of the
most vulnerable African American older adults are renters, enacting
legislation requiring public-sector housing authorities and private-sector
owners of multi-family rental properties to make age-friendly upgrades to
properties and their built environments will reduce the likelihood of accidental
slips and falls that often lead to long-term stays in institutionalized care.
These policy changes are essential to address
the racial disparities in LTSS—disparities that result from the United States’
long legacy of racial discrimination. While policies that foster aging in
place make communities more age friendly, support family caregivers, improve
housing stock, address financing, and ensure high-quality services in
residential settings will benefit all populations as they age, such policies
will be particularly important to make high-quality LTSS accessible and
affordable for older African Americans and their families.
Barbara Gay is vice president of Public Policy
Communications at LeadingAge, in Washington, D.C. Ruth Katz. M.A., is senior
vice president of Public Policy/Advocacy at LeadingAge. James H. Johnson Jr.,
Ph.D., is Distinguished Professor of Strategy and Entrepreneurship and
director, Urban Investment Strategies Center, at the University of North
Carolina’s Kenan-Flagler Business School in Chapel Hill, North Carolina.
References
American Association of Homes and Services for
the Aging. 2009. Serving the Underserved: The Case for Supporting and
Sustaining a Mission of Value: Recommendations for the
Inner City Brain Trust. Washington, DC:
American Association of Homes and Services for the Aging.
Barton Smith, D., et al. 2008. “Racial
Disparities in Access to Long-Term Care: The Illusive Pursuit of Equity.” The
Commonwealth Fund. tinyurl.com/y3pfn29k. Retrieved December 28, 2018.
Board of Governors of the Federal Reserve
System. 2013. Survey of Consumer Finances 2013. tinyurl.com/yxk4fhqf. Retrieved
December 28, 2018.
Genworth. 2018. Cost of Care Survey 2018.
tinyurl.com/ybhbupdo. Retrieved December 28, 2018.
Gifford, K., et al. 2018. “States Focus on
Quality and Outcomes Amid Waiver Changes: Results from a 50-State Medicaid
Budget Survey for State Fiscal Years 2018 and 2019.”
Henry J. Kaiser Family Foundation.
tinyurl.com/y9kjnlhk. Retrieved December 28, 2018.
Johnson, J. H. Jr., and Lian, H. 2018.
“Vulnerable African American Seniors: The Challenges of Aging in Place.”
Journal of Housing for the Elderly 32(2): 135–59.
Johnson, J. H. Jr., Parnell, A. M., and
Johnson, T. L. 2018. Race and Residence in Continuing Care Retirement
Communities/Life Plan Communities. Cedar Grove Institute for Sustainable
Communities. tinyurl.com/y52srgjw. Retrieved December 28, 2018.
Johnson, R. W. 2016. “Who Is Covered by
Private Long-Term-Care Insurance?” Urban Institute. tinyurl.com/yxqklvdz.
Retrieved December 28, 2018.
Konetzka, R. T., and Werner, R. 2009.
“Disparities in Long-Term Care: Building Equity Into Market-Based Reforms.”
Medical Care Research and Review 66(5): 491-521.
Proctor, B., et al. 2016. Income and Poverty
in the United States: 2015. U.S. Census Bureau. tinyurl.com/jgwmkty. Retrieved
December
28, 2018.
28, 2018.
Yuan, Y., et al. 2018. “Socioeconomic and
Geographic Disparities in Accessing Nursing Homes with High Star Ratings.”
Journal of Post-Acute and Long-Term Care Medicine 19(10): 852–59.
No comments:
Post a Comment