Let’s Recognize That Care Work Is the Labor That Makes All Other Labor Possible

Part of the Series

The Struggle for Caregiving Equity

This spring the Biden administration declared April as National Care Workers Recognition Month, releasing the largest slate of executive actions for care work in history, including directives to support family caregivers and enhance job quality for long-term care workers. These include initiatives to ensure that funding for long-term care goes directly to worker wages, to establish the first-ever national pilot for respite for family caregivers, to create pipelines for care workers to enter child care and long-term care professions, and to increase training opportunities.

We should celebrate these wins while also recognizing that they are only a small part of addressing the issues care workers have faced for far too long. As a former direct care worker and someone who has family members who rely on direct care workers every day, I can tell you this: Care work is the labor that makes all other labor possible.

The work that this country’s 4.7 million direct care workers do is vital to tens of millions more people across the country. It can include providing supports in personal care and daily activities of living, assisting in communication, completing household tasks, building relationships and navigating the community. This work is invaluable to the people who rely on their care, to family caregivers, and to the system that relies on their labor to keep people who receive care and support out of more costly, restrictive and often segregated institutional settings.

Despite this, the U.S. has never directed appropriate federal investment to raise wages for this valuable workforce. The direct care workforce, in some states, make just more than minimum wage. That is unacceptable; this is skilled and important work that should be paid family-sustaining wages with career ladders.

The federal government must step in because states have not picked up the slack. We must build a robust federal paid family and medical leave program, create a strong national child care system, make transformative investments in aging and disability care, and set a standard of fair pay for all care workers.

Care workers even put their own safety aside to perform essential labor during the COVID-19 pandemic, fulfilling an even more critical role than before. They were stretched thin long before the pandemic and the public health crisis only exacerbated the issue. I’ll say this plainly: This exclusion and lack of investment is an equity issue rooted in our country’s founding.

Direct care workers — disproportionately Black, Brown and immigrant women — are often paid poverty wages in jobs that lack the most basic protections and benefits including overtime pay, paid leave and the right to form a union. In fact, care workers are among the lowest paid in the U.S. economy and are three times more likely to experience poverty than other workers. This harms not only the workers themselves, but everyone who depends on their work — which is to say, all of us.

Our nation has historically treated caregiving as invisible and not valued work because some of the earliest care workers in the United States were enslaved African women. Today, Black women continue to experience the deepest harms from the lack of investment in care.

The size of the problem requires both state and federal action.

It’s no accident that women — mostly underpaid Black, Brown and immigrant women — are expected to do care work without proper support, compensation or recognition. Racist, sexist and ableist systems that tolerate such discrimination have been allowed to continue for too long. Many people still think and refer to care work as “help,” as opposed to the highly skilled and vitally important profession it truly is for millions of workers.

It is imperative that we better protect, respect, and pay our care workers to ensure quality, consistent, person-centered care that meets the needs of our population — and to make a real move toward equity for the people who comprise this workforce.

I know this all too well from a personal perspective. In fact, my work to expand care for disabled people and older adults is rooted in my love for my brother and our joint passion to ensure that everyone has access to the supports that they need.

Chris is 33, autistic, and receives Medicaid home- and community-based services (HCBS) in Illinois. Throughout his life, my family has had to fight hard for inclusion, for consideration and for the services that he needs. So, it is never far from my mind how different his life could look without the supports that he receives.

Chris lives in the suburbs of Chicago with my parents who both work full-time jobs. His care team includes three to four direct support professionals (DSPs) who come throughout the week to ensure he can go out into the community, from working out to finding employment.

It sounds great, right? And it can be, but this supportive care that creates such independence all hangs on a very tenuous thread: that care workers can afford to care for others and still support their families and lives. In my home state of Illinois, where the average direct care wage is abysmally under $10 per hour, it’s a very thin thread indeed.

When I was writing this, I asked my brother to share his thoughts on this issue. He typed, “I want more support, I am very frustrated and I feel that my progress is being hurt. I need more regular scheduled DSPs and they deserve to earn more because of the work they do and so they stay. I have no patience anymore.”

This breaks my heart as a sister and as an advocate for care in this country. The stress I hear in my mom’s voice every time I ask for an update is the same stress I hear from every individual with disability, every aging adult, and every caregiving family member or provider group I talk to.

It is time to ensure that care jobs are good jobs with real wages, benefits and the right to workplace collective bargaining. It is time to reduce the strain on our caregivers and fix this inequity. And it is time to make permanent investments to strengthen our country’s care infrastructure for our families, loved ones, the economy and our collective future.

It’s time Congress finishes the job and prioritizes care workers and caregivers by passing vital legislation such as the Better Care Better Jobs Act and the Home and Community-Based Services Access Act, bills that would increase federal investments to specifically raise the wages of care workers.

In addition to federal investments campaigns like “They Deserve More” in Illinois that seek state funding, the size of the problem requires both state and federal action. In the meantime, care workers will continue to organize and share their stories, and we all will fight to ensure their value is seen.