Discrimination and prejudice against people with disabilities, based on assumptions of inferiority, abnormality, or diminished humanity.[i] Under the dominant political philosophy of neoliberal capitalism in the United States in which people with functional limitations are positioned as less “valuable” due to market perceptions of reduced productivity, ableism is weaponized to justify the low-quality care and inhumane conditions often experienced by consumers of long-term services and supports (LTSS). For example, Friedman and VanPuymbrouck (2019) found that states whose residents have more disability prejudice direct less of their LTSS funding towards home- and community-based services (HCBS), reflecting a bias towards institutionalization of disabled consumers of long-term care.[ii]
Discrimination and prejudice against older adults and elders, based on negative associations and stereotypes related to age. Gerontologist Robert Butler first coined the term in 1969, during the Civil Rights era, to describe the pervasive, systematic negative treatment of older adults in the United States.[iii] Ageism contributes significantly to lowered care quality and the devaluation of caregiving for consumers (mostly older adults) who use LTSS to live safely at home and in nursing and residential facilities. In the U.S., the default public funding for LTSS has historically been biased towards institutional care, and the thus responsibility for caring for older loved ones often falls to unpaid family members due to the unaffordability of paid in-home care – one of many examples of structural ageism at work in devaluing caregiving. Low quality jobs for long-term care workers are also partially rooted in how consumers, many who are older adults, are systematically devalued culturally.[iv]
BIPOC is an acronym which stands for Black, Indigenous and People of Color.[v] BIPOC workers, including Black, Latinx, Asian, Indigenous and non-white identified people, make up the disproportionate majority of the long-term care (LTC) workforce.[vi] When speaking or writing about a specific group or demographic of non-white caregivers, utilize more specific language that refers to the caregivers’ preferred identities.
An organization of caregivers bargaining collectively for quality jobs, wages, benefits, better working conditions and workplace protections. Access to caregivers’ unions is associated with better job quality for caregivers, which in turn leads to better care quality for consumers – the pandemic has even shown how mortality rates from COVID-19 are lower in unionized nursing homes.[vii]
One of millions of Americans—including children, adults, and elders—who have disabilities or chronic conditions and utilize long-term services and supports, ranging from assistance with activities of daily living (ADLs) like eating, bathing, and dressing or other activities such as housekeeping to more complex medical care.[viii] The number of consumers is expected to increase rapidly during the next several decades as the U.S. population ages. Millions of consumers receive publicly funded LTC services, pay for private care, or receive unpaid care from family members and friends. Many consumers also go without enough of the services they need because they lack family support and/or the financial resources to pay for care.[ix] Chronic underfunding and narrow eligibility for public LTSS programs for consumers exacerbates the low wages and benefits and poor job quality experienced by most LTC workers.
Home- and community-based services (HCBS) is an umbrella term for long-term health care, services, and supports provided to a consumer in their home and/or in more integrated community-based settings, as opposed to institutional settings such as nursing homes.[x] HCBS enable many people with disabilities of all ages to live independently and fully participate in their communities as they choose.[xi] HCBS include both health and human services to address an individual’s medical needs, daily living activities, and community integration.[xii] The HCBS workforce provides a variety of services, including personal care (such as assistance with bathing, dressing, eating, transferring, and toileting), home health care (such as skilled nursing care; physical, occupational and speech therapy; and pharmacy services), transportation, homemaker and chore services, and many more.[xiii]
Intersectionality is an analytical framework conceptualized by Black feminist and critical race scholar Kimberlé Crenshaw for understanding how aspects of a person’s social and political identities combine to create different modes of discrimination and privilege.[xiv] Intersectionality provides a tool to unpack how factors of advantage and disadvantage such as gender, sex, race, class, sexuality, religion, disability, nationality, physical appearance, and others, contribute to what Black feminist theorist Patricia Hill Collins refers to as the “interdependent phenomena” of oppressions a person experiences.[xv] Intersectionality is an important framework to inform processes of advancing racial equity and job quality in long-term care because it helps us understand the complex, intersecting oppressions that long-term care workers face in their field that have led to each worker’s unique experiences with poor job quality and barriers to advancement. It also helps us understand the myriad of life factors that impact the whole person of the worker, in addition to their employment role as a caregiver, in order to create equitable, comprehensive workforce policies.
Long-term care (LTC) provided in facility-based settings such as skilled nursing facilities, or SNFs, (also called nursing homes), outside of the community or home of the consumer. Medicaid is the primary payer of LTSS, yet despite most consumers’ preferences to receive care at home, federal Medicaid law has a historical and continued bias towards institutional care over home- and community-based services (HCBS).[xvi] Institutional care in nursing homes is primarily provided by nursing assistants who do the emotionally and physically demanding work of providing personal bodily care, lifting and carrying, and providing emotional support to residents who may be experiencing mental health difficulties or memory loss. Despite the demanding work, nursing assistants experience poor job quality, earning near-poverty wages, receiving minimal supervisory support, and finding frequently finding training and career paths limited.[xvii] The poor job quality experienced by workers in direct caregiving is no coincidence: 91 percent of nursing assistants are female, and the majority (over 53%) are people of color. Structural racism and sexism precipitate both the composition of the nursing assistant workforce and the continuation of low wages and lack of advancement in the institutional care field.[xviii]
Occupational segregation occurs when one demographic group is overrepresented or underrepresented among different kinds of work or different types of jobs.[xix] Occupations with more men tend to be paid better regardless of skill or education level. This is because if work is done predominantly by women, then it is valued less in the labor market.[xx] This trend is also highly racialized: women of color at all education levels are segregated into jobs with lower wages than their white female peers of similar skill levels.[xxi] Long-term care is one of the most segregated fields in the U.S. labor market – 87% of direct care workers in home care and institutional care are female, and 59% are people of color.[xxii] The demographic profile of the long-term care workforce reflects the legacy of caregiving as “women’s work,” the responsibility of unpaid and low-paid women in the home. Caregiving jobs are undervalued in the labor market, leading to women and people of color (especially a disproportionate percentage of Black women compared to the population) in low-wage long-term care occupations.[xxiii] Thus the occupational segregation of LTC functions cyclically, sorting women and people of color into poor quality jobs and then the very demographics of the workforce keeping wages low and job quality down due to structural racism and sexism.
Racial equity can be defined as both an outcome and as a process.[xxiv] As an outcome, racial equity occurs when race no longer determines a person’s socioeconomic outcomes and everyone has what they need to thrive, regardless of where they live or their background. As a process, racial equity should be applied when those most impacted by structural inequities are meaningfully involved in the creation and implementation of the institutional policies and practices that impact their lives.[xxv] When our society achieves racial equity, all people (including people of color) will be owners, planners and decision-makers in the systems that govern their lives, and everyone benefits from a more just, equitable system.[xxvi] Our society will not be able to reach racial equity without acknowledging and accounting for past and current inequities.[xxvii] Specifically within long-term care, racial equity means that consumers have access to quality care and workers have access to quality jobs regardless of their race – and this cannot be accomplished without accounting and correcting for the layers of racial inequities in caregiving that have been embedded in receiving and providing care throughout U.S. history.
Throughout U.S. history, opportunity, freedom and prosperity have been largely reserved for white people through the intentional exclusion and oppression of people of color. The deep-rooted racial and ethnic inequities that exist today are a direct result of structural racism, which can be broadly defined as the historical and contemporary policies, practices and norms that create and maintain white supremacy.[xxviii]
The Aspen Institute Roundtable on Community Change convened key thinkers and activists in early 2000 to provide this seminal definition of structural racism:
“A system in which public policies, institutional practices, cultural representations, and other norms work in various, often reinforcing ways to perpetuate racial group inequity. It identifies dimensions of our history and culture that have allowed privileges associated with “whiteness” and disadvantages associated with “color” to endure and adapt over time. Structural racism is not something that a few people or institutions choose to practice. Instead, it has been a feature of the social, economic and political systems in which we all exist.”[xxix]
Understanding the embedded and often invisible currency of structural racism in our society is essential to advancing racial equity and job quality in long-term care because often the intentional policy choices that over time have devalued caregiving and relegated care occupations to low wages and little opportunity for advancement are distorted and blame is placed at the feet of the workers (especially women of color), rather than on the structural racism at work.
The Aspen Institute Roundtable on Community Change convened key thinkers and activists in early 2000 to provide this seminal definition of structural racism:
“A system in which public policies, institutional practices, cultural representations, and other norms work in various, often reinforcing ways to perpetuate racial group inequity. It identifies dimensions of our history and culture that have allowed privileges associated with “whiteness” and disadvantages associated with “color” to endure and adapt over time. Structural racism is not something that a few people or institutions choose to practice. Instead, it has been a feature of the social, economic and political systems in which we all exist.”[xxix]
Understanding the embedded and often invisible currency of structural racism in our society is essential to advancing racial equity and job quality in long-term care because often the intentional policy choices that over time have devalued caregiving and relegated care occupations to low wages and little opportunity for advancement are distorted and blame is placed at the feet of the workers (especially women of color), rather than on the structural racism at work.
Scholar john a. powell coined the term targeted universalism to describe an innovative policy development and implementation strategy of setting universal goals for all groups pursued by targeted processes to achieve those goals by tailoring policies to how different groups are situated within structures, culture, and across geographies.[xxx] In long-term care workforce policy reform, applying targeted universalism is an important practice because it helps attune reforms to address the challenges and barriers each worker faces based on their unique, intersecting identities and social factors that provide advantages and disadvantages (see the definition of “Intersectionality”). As john a. powell et al explain, by developing and implementing targeted universal policies, reformers need not be limited to simply “closing the gap” between Black and white workers, for example, but can break down barriers each group faces in order to bring outcomes for all workers to a visionary universal goal.[xxxi]
