Why We Need to Say Direct Care Work Is Real Work
Last month, PHI published Direct Care Work Is Real Work: Elevating the Role of the Direct Care Worker. The report looks at the inconsistent training landscape for direct care jobs and explores aspects of this work that are overlooked and undervalued. It builds on two prior publications in the Caring for the Future series, which detailed the composition and scale of the direct care workforce and the complexities of the long-term care industry.
Direct Care Work Is Real Work shows that low training standards hinder direct care workers’ potential and threaten quality of care. These standards also reinforce an insidious perception that direct care is not work, suggesting that it doesn’t require a specific set of knowledge and skills. This perception is further reflected in the failure to recognize direct care jobs with livable wages, benefits, safety protections, or career pathways.
Yet anyone who has provided or witnessed direct care work knows that it is real work. Here are four reasons why it remains widely misunderstood.
Direct care work takes place in locations we can’t, or choose not to, see.
Long-term care settings in the United States include private homes, nursing homes, and residential care communities, among other settings. People who do not work or receive care in these spaces are less likely to view them as workplaces in the way they might regularly view a food, retail, or construction site. This makes it harder to recognize direct care workers and describe what they do.
In addition to being structurally less visible than other labor, direct care work is often rendered invisible by choice. Long-term care, by definition, is provided to people who need assistance with activities of daily living on an ongoing basis. This concept of needing support contrasts with the values of individualism and self-reliance that pervade American society. These values reinforce significant social stigmas associated with aging, illness, and disability. Our culture is also highly youth-focused; we are uncomfortable with mortality and the need for end-of-life care. Such stigmas lead people to avoid these topics rather than to embrace them as normal conditions of humanity. This avoidance extends to the direct care workforce, leaving much of the public unfamiliar with, or uninterested in examining, its work.
Sexism, racism, and xenophobia have diminished the contributions of direct care workers.
The perception that direct care work is not real work is linked to longstanding and damaging assumptions about gender, race, ethnicity, and origin. These ideas continue to influence the social and economic structures through which we see, train, and compensate the direct care workforce.
Primary among the forces that undervalue direct care is the incorrect belief that caring activities are less effortful for women. Much of our economy has been built on the outdated assumption that work within the home—including care for older adults—will be done, unpaid, by female family members as a matter of social order. This legacy has been difficult to shake. As with other work traditionally performed by women, when direct care was formalized as paid labor, its wages were set abysmally low. Many assume that low-paying work is also less difficult work, making it easier to misunderstand direct care work as simple or low-skill. It is neither.
Gendered assumptions about care work have compounded other systems of oppression that have defined the labor of people of color and/or immigrants in the direct care workforce over time. In the U.S., home care work was part of the domestic labor performed largely by Black women for white families during slavery. Racialized domestic work arrangements continued with little in the way of wage and labor protections in the century that followed, suppressing the pace of professionalization for this workforce. It was not until 2013 that home care workers were included in the Fair Labor Standards Act and granted minimum wage and overtime protections at the federal level.
Direct care jobs are also among a number of demanding yet low-paying occupations that are disproportionately held by immigrant workers. In 2017, people born outside the U.S. comprised 26 percent of the direct care and likely a higher percentage of those employed out-of-pocket in the gray market. The high proportion of immigrant workers in direct care is commonly attributed to the physically and emotionally difficult nature of direct care work, which is presumed to be unappealing to U.S.-born workers. Such explanations reflect harmful xenophobic beliefs that immigrants are less deserving of well-recognized, well-compensated jobs than native-born Americans.
Though we live in an era when the law prohibits employment discrimination, the roots of gendered, racialized, and xenophobic labor arrangements run centuries deep. Many of the assumptions behind these forms of inequity have been internalized and accepted as inevitable in long-term care. They play out year after year, as funding decisions are made that keep the quality of direct care jobs low, obscuring the real complexity of this work and the worth of those who do it.
Weak training standards fail to reflect the full scope of direct care work.
As detailed in Direct Care Work Is Real Work, training for only two direct care occupations—home health aides and nursing assistants—is regulated at the federal level. Further, just 14 states have consistent training regulations for personal care aides. There are dozens of job titles for direct care workers that vary across states, settings, and funding programs. This variety of terms, and the inconsistent standards among them, add to confusion about this workforce. Disconcertingly, even leaders of the agencies that regulate direct care work may sometimes be unable to describe what these workers do.
Where training regulations exist, they tend to focus on the support direct care workers provide for consumers’ activities of daily living, such as eating and bathing. But today’s direct care workers do far more than their training standards, or pay levels, suggest: they perform physically demanding technical maneuvers, provide sustained social and emotional engagement, and support consumers in managing an increasingly complex array of health and behavioral conditions.
Direct care workers’ experiences are rarely given attention, and their impact is understudied.
Though direct care is the largest job sector in the U.S., its workers receive far less public attention than other health care and service workforces. Direct care work has become exponentially more complicated, and dangerous, due to the COVID-19 pandemic. Yet while long-term care settings account for a significant portion of virus cases and deaths, its workers have been largely left out of public health, advertising, and PPE donation campaigns celebrating essential workers and “health care heroes.” Many direct care workers have also been excluded from paid sick leave protections in federal relief bills like the Families First Coronavirus Response Act. Without sufficient PPE, training, and job supports, many feel on their own in the pandemic.
One reason direct care workers receive less attention for fighting COVID-19 is that their work is often disconnected from the larger health care system. Though home care workers and nursing assistants develop unique understandings of consumers’ physical, social, and environmental needs, they are rarely given opportunities to communicate with other health and social care providers. When these workers are integrated into care coordination teams, they can help reduce negative health outcomes for consumers. However, such care models are rare. So far, direct care workers’ impact on health outcomes is understudied and their true impact unassessed.
Together, the isolated settings, social stigmas, economic marginalization, and unsupportive systems surrounding direct care work leave many in this workforce feeling invisible. It is time to let direct care workers know they are seen and to say: direct care work is real work.