As a long-term care advocate, the most common question I get from friends is about access. A friend needs home care for his father with dementia, but he doesn’t know where to start or whether he can afford it. Another friend who has begun applying for Medicaid for her mother soon discovers that the application process is arduous and deeply invasive. Worse, she learns that paying for a nursing home will quickly deplete her mother’s savings—as designed by Medicaid—just to qualify for government support. The safety net for people who need long-term care is fractured, unfair and complicated—a painful realization at the worst possible time.
I think of these scenarios when I’m caught in policy debates about the value of home care workers. Today’s realities: Home care jobs pay substandard wages and offer limited training and advancement opportunities, which forces workers to pursue jobs in other sectors, like fast food or retail. Nationally, the workforce shortage in home care worsens by the day. Medicaid, the primary payer for long-term care, remains severely underfunded, politically precarious, and fraught with dysfunctions. More broadly, our ageist and ableist disregard for elders and people with disabilities—especially people of color—further shrinks the lens on this topic.
Accessing a caregiver, as my friends eventually discover, is about a broader system that’s ill-equipped to sustain us—and racial discrimination is one of the primary impediments.
Most recently, PHI, the organization for which I work, explored this idea when we issued three separate studies on this workforce. In June 2017, we released a study on immigrants in direct care, finding that roughly 1 million immigrants in this country provide paid care to older people and people with disabilities. In short: the long-term care sector would collapse without immigrants, a conclusion nicely captured by The New York Times and the Wall Street Journal (among other outlets). A few months later, we published a study on racial and gender disparities in the direct care workforce, finding that women of color experience higher poverty rates than others in their field. Women of color are the present and future of this workforce—yet they face punishing financial obstacles at every step.
Our third study—released this month as three research briefs—looked at Black, Latino and Asian and Pacific Islander workers in direct care. Black people represent nearly one in three direct care workers, and many are impoverished and rely on public benefits to survive. (Notably, the study found that the family incomes of black direct care workers are dramatically lower than white workers—about $15,000 less per year. Not only do low-wage direct care jobs spiral workers of color into poverty, but people of color contend with a racialized economy since birth and they arrive in these jobs already at a disadvantage.) A similar profile emerged for Latino and Asian/Pacific Islander workers in this sector: lower incomes, more poverty, and higher rates of public benefits than white workers. In turn, when this workforce suffers, the quality of care suffers, and all of us who rely on long-term care suffer, especially older people of color who enter their later years sicker and with fewer supports than the general population.
How can the aging and long-term care sector support people of color in direct care? For starters, we can collect better data on racial disparities in this industry, investigating whether workers of color struggle more on the job than their white peers. (We should also examine service-related outcomes among communities of color that spur health disparities—providers might be unintentionally neglecting the most isolated and vulnerable people in their service areas.) Long-term care providers should also set race-explicit hiring and retention goals, and they should work closely with people of color-led community-based organizations that are well-equipped to improve employability among their residents. For people of color, improving employment means more than creating better jobs—it means reforming the broader structures that feed inequality and impair employment, from education to housing, and much, much more.
It’s no wonder my friends struggle to access support when their parents need long-term care. The long-term care system needs extensive repair, which also includes fixing the racial and gender disparities hindering people of color in the direct care workforce, among other solutions. And it might boil down to a few core questions: If these workers, who are largely women of color, don’t earn enough to succeed on the job, how will they live—and why would they stay? And without direct care workers, who will care for our families when crisis hits?
Robert Espinoza is the Vice President of Policy at PHI (Paraprofessional Healthcare Institute), a national research and consulting organization and the nation’s leading expert on the direct care workforce. In 2010, he co-founded the Diverse Elders Coalition.
The opinions expressed in this article are those of the author and do not necessarily reflect those of the Diverse Elders Coalition.