Today’s Victories for Direct Care Workers Took Decades of Activism

The last few years have been profound for direct care workers. The COVID-19 pandemic has strained this workforce, yet it has also amplified its visibility and compelled the $1.9-trillion American Rescue Plan Act, which many states are using to propose historic measures that improve these jobs. Further, while the federal “Build Back Better” proposal has stalled, the Administration for Community Living recently issued a funding notice to establish a national technical assistance center for direct care workers—and other initiatives could follow. At the state level, policymakers continue to draw attention to this workforce, responding to the growing workforce shortages that further threaten care for millions of older adults and people with disabilities.

This level of national attention on direct care workers is unprecedented and sorely needed. Historic moments of this magnitude do not happen overnight. As we celebrate the attention that direct care workers are increasingly garnering and reflect upon everything that is still needed to transform the direct care workforce in the long term, it's important to take stock of the major advances that got us to this point. Here is a select sample of defining historical moments for the direct care workforce draw from PHI’s new timeline on this movement.

1893–1965

In 1893, the country’s first public health nurse, Lillian Wald, began delivering home health services throughout New York City. Her work established what would later become one of the largest nonprofit home healthcare agencies in the country, the Visiting Nurse Service of New York (VNSNY). Today, VNSNY is part of a long-term care sector that includes more than 12,000 home health agencies, more than 15,000 nursing homes and nearly 29,000 residential care communities employing millions of direct care workers.

In the 1930s, as Congress created the New Deal and established both the National Labor Relations Act (1935) and the Fair Labor Standards Act (1938), domestic and agricultural workers were excluded from these critical collective bargaining rights, as well as from wage and overtime protections. Such policy exclusions would impoverish these workers for decades and lay the foundation for the poor job quality this workforce has experienced to the present.

‘Since PHI’s founding, a growing number of organizations have dedicated themselves to strengthening the direct care workforce.’

Starting in 1935, Congress began creating the national infrastructure for supporting millions of older adults and people with disabilities by passing the Social Security Act—and in 1965, it established Medicare, Medicaid and the Older Americans Act. While these programs have been critical to millions of people—and built an ever-growing direct care workforce—they have also been rife with inequities and persistently struggled because of underfunding.

1985–2010

In 1985, a small team of home health aides and workforce experts founded Cooperative Home Care Associates, a first-of-its-kind worker-owned home care agency in the South Bronx that would grow into the largest worker cooperative in the country. Six years later, what was then called the Paraprofessional Healthcare Institute (now PHI), was established, eventually becoming the nation's leading expert on this workforce.

Since PHI’s founding, a growing number of organizations have dedicated themselves to strengthening the direct care workforce, creating an extensive network of national, state and local groups that flourishes to this day.

In 2000, the U.S. Department of Health and Human Services awarded the first known federal grant or contract to support direct care workers, which funded the establishment of the National Clearinghouse on the Direct Care Worker (now the National Direct Care Workforce Resource Center). This resource helps researchers, policymakers and others in better understanding—and building the knowledge base on—these workers.

Federal support for direct care workforce projects continued throughout the decade. Funded projects included: a series of publications to help recruit, train and retain home care workers (2002); the creation of the Direct Service Workforce Learning Collaborative to develop innovative direct care workforce strategies; a groundbreaking report on the healthcare workforce (2009); a six-state program through the Affordable Care Act that collectively trained approximately 4,500 new and incumbent direct care workers across three years (2010); and a seminal report that recommended a first-ever national minimum data set on the direct care workforce (2010).

2011–2021

On the heels of the federal progress that had been made for direct care workers, and bolstered by joint advocacy from several leading organizations, the U.S. Department of Labor issued a federal rule in 2013 that extended wage and overtime protections under FLSA to more than 2 million home care workers nationwide. (Due to a court delay, the rule didn’t go into effect until October 2015.)

In 2013 the Labor Department issued a rule extending wage and overtime protections to more than 2 million home care workers.

This rule further galvanized the direct care workforce political movement, including at the state level, where organizations and coalitions advanced a range of policy measures to improve compensation, training, advancement and general support for these workers. Nationally, the research field and workforce development sector designed a variety of cutting-edge studies and interventions during this decade. In addition, a growing network of national organizations raised the visibility of these workers in various industries, policy spaces and the media.

In 2020, while running for president, then–Sen. Joe Biden released a large-scale plan to “create a 21st-century caregiving and education workforce,” representing the first significant acknowledgement of these workers from a presidential candidate. In early 2021, Biden’s administration announced several significant proposals to improve direct care jobs, notably Build Back Better, a multibillion-dollar investment in improving direct care jobs and expanding home- and community-based services (among other measures). Build Back Better has lost some momentum at the federal level but it has paved a path for other policy measures at the federal level that would continue to improve these jobs and increase access to care for everyone.

The Path Ahead

Movements take time to achieve lasting change. They take effort and innovation. They are led by a constellation of individuals and groups—some more visible than others.

But the work is far from over. We are years away from strengthening the direct care workforce to the point where all of us can receive the services and supports we need—and where workers can thrive professionally and financially. Let’s continue to work together to create this reality.

Read a curated timeline of the direct care workforce movement.


Robert Espinoza is the Executive Vice President of Policy at PHI, where he directs a national policy advocacy and research program focused on the direct care workforce. He also serves as a member of the board of directors for the American Society on Aging, the National Academy of Social Insurance, and the FrameWorks Institute.