Originally published here.

For older adults and many people with disabilities, personal care services are often critical for facilitating community living over institutionalized living (Doty et al., 1996). Personal care aides1 (also called direct supports or direct support professionals) assist people with disabilities and older adults with activities of daily living as well as other tasks necessary for community integration. As a result of the many different roles they may play, such as assistance with personal care, transportation, education, household tasks, and self-determination, personal care aides must utilize a complex balance of skills and competencies (Hasan 2013; Hewitt et al. 2008; National Direct Service Workforce Resource Center n.d. 2013; Robbins et al. 2013).

As a result of an increase in community living among people with disabilities, and the aging of the baby boomer population, the personal care sector is one of the fastest growing areas of the labor force in the United States (Bogenschutz et al. 2014; Micke 2015; Robbins et al. 2013). In 2011, there were approximately four million personal care aides in the United States (National Direct Service Workforce Resource Center 2013; Taylor 2008). By 2020, direct support is estimated to be the largest job in the country (Bogenschutz et al. 2014; Hewitt 2014).

Despite an increased need, there is currently a personal care staffing crisis, with astronomical turnover (American Network of Community Options and Resources 2017; Bogenschutz et al. 2014; Ligas Consent Decree Monitor 2017; Micke 2015). Estimates suggest that organizations supporting people with disabilities or older adults may see anywhere from 30% to 70% personal care aide turnover a year (American Network of Community Options and Resources 2017; Bogenschutz et al. 2014; Hewitt 2014; Keesler 2016; Micke 2015). The majority of this turnover is due to staff quitting rather than being fired, because despite the immense and growing need, personal care aides ‘are among the nation’s most vulnerable workers’ (American Network of Community Options and Resources 2014, 1).

This staffing crisis is decades in the making in the United States; its origins are in deinstitutionalization. With deinstitutionalization and an increase in community living, larger workforces were needed; staff’s roles also shifted from only supporting people’s basic needs, such as health and safety, to expanded tasks and roles wherein personal care aides were also responsible for supporting community integration, people’s goals, etc. (American Network of Community Options and Resources 2014). Despite an increased workload and the demand for personal care services, personal care aides’ wages in the United States have not increased appropriately, even including a failure to mirror inflation (Wachino, 2016).

Despite demanding work that requires a multifaceted skillset, the majority of personal care aides in the United States receive wages only slightly higher than the federal minimum wage. As of May 2017, the national average wage for personal care workers was $11.59 an hour or $24,100 annually (Bureau of Labor Statistics 2017b). For comparison, the annual living wage in the United States in 2017 for a family of four (two working adults, two children) was $66,851—$16.07 an hour for each parent (Nadeau and Glasmeier 2019). Low wages, combined with very few positions offering benefit packages, such as health coverage, retirement, paid time off or personal leave, have resulted in many personal care aides relying on public assistance (Bogenschutz et al. 2014; Hewitt et al. 2008).

Low wages, a lack of benefits, a lack of training, and organizational cultures all culminate to produce immense turnover and recruitment problems. This is problematic not only for the lives of personal care aides themselves, but also because it negatively impacts people with disabilities and older adults. The personal care aide crisis not only hinders the community integration of people with disabilities, it can also put their very health and safety at risk. As such, ‘a competent and stable workforce is a quality indicator in the lives of people with’ disabilities (McLaughlin et al. 2015, 267).

While individual human service agencies often cannot simply increase wage rates because they receive reimbursement through Medicaid, states have the flexibility to determine not only what services they provide in Medicaid, such as personal care, but the rates they provide for those services (American Network of Community Options and Resources 2014; Wachino, Schneider, and Rousseau 2004). States primarily fund their share of Medicaid through taxes and, as a result, state climates favoring tax cuts find reduced revenues dedicated to Medicaid services (Holahan et al. 2004). As such, decisions about dedicating revenues, including if and how personal care aide wages are prioritized, are impacted by factors such as states’ stances on taxation, ideas of ‘entitlements,’ and disability attitudes, among others. As a result, attitudes about not only people with disabilities, but also other prejudices and structural oppressions, can impact decisions regarding state policies and allocations, including personal care services and wages for personal care aides. For most individuals in society, including policy makers and those in positions to determine funding distribution, attitudes toward social minority groups are acquired over time, socially constructed, and influence the action of its members (Campbell 2009; Schwartz and Armony-Sivan 2001).

In this study, we explored how ableism, racism, and sexism may trickle down to impact personal care aide wages in the United States. In doing so, our findings revealed a significant relationship between states’ average personal care aide wages and their sexism, wherein states that were more sexist had lower personal care aides on average. While we hope our research will help call attention to this relationship and related structural barriers to personal care aide wages, we do not intend to suggest that by tackling sexism alone the personal care aide crisis will be fixed. It is but a piece of a very complex problem decades in the making; as such, we recognize a multipronged approach is necessary.

For example, Smith, Macbeth, and Bailey (2019) suggest the professionalization of direct support professionals will not only result in wage stabilization and expanded tenure of personal care aides as a result of a career ladder, but also better supports for people with disabilities as a result of competency-based training. Regardless of the strategies utilized to stabilize, grow, and recognize the profession of personal care aides, it is important to examine the role sexism plays in the wages of personal care aides. Until structural oppressions are addressed, there will be no justice—for personal care aides or the people with disabilities they support.

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