Health care is often one of the largest and most stable sectors in cities throughout the country. In fact, home health aides and personal care aides are among the largest job growth occupations of the coming decade.

However, tight budgets, combined with a growing demand for specialized care, mean that nursing home facilities and providers of home- and community-based care agencies are increasingly facing closures and financial ruin. Care workers and clients alike fear that the current trends of industry consolidation and privatization, along with underinvestment, will result in poorer care quality, decreased job satisfaction and lower rates of unionization.

In addition to expanding health care access and actions like immigration reform, the long-term care industry requires a robust non-extractive financing strategy to offer an alternative path for financially burdened nonprofit and smaller providers, particularly Black, Indigenous and people of color (BIPOC) business owners, to provide quality jobs caring for aging adults and people with disabilities.

The Centering Equity in Long-Term Care Class of the MIT Community Innovators Lab (CoLab) Mel King Community Fellowship Program is a cross-sectoral set of leaders that seeks to re-envision and actualize a Long-Term Support Services (LTSS) system that will build wealth for care workers and preserve wealth for those who need care and their families. Mel King, whom the fellowship was named after, was a barrier-breaking Boston politician and activist who died at the age of 94 on March 28, 2023.

This strategic leadership program consists of 18 leaders representing more than 1 million workers, tens of millions of potential investment dollars and is directly connected to hundreds of local advocacy organizations. The fellowship program is structured to support fellows as they co-lead projects that advance the short-term and long-term opportunities for change across the care sector.

Through a coordinated bi-coastal effort concentrated in California and New York, CoLab works to advance universal long-term care, engage values-aligned finance leaders and position the long-term care workforce — primarily women of color and women who have immigrated to the U.S. — to own and govern the businesses that deliver long-term care services in BIPOC communities.

As a growing industry with large numbers of BIPOC workers, long-term care is a sector in transition that offers both risk and opportunity. For example, 90 percent of the direct care workforce in New York City are people of color; in Manhattan, 55 percent of direct care workers identify as Hispanic or Latino, compared to 16 percent of workers in Brooklyn.

“Healthy BIPOC-owned businesses could be a critical component for closing the racialized wealth gap. Yet currently, BIPOC workers and business owners tend to be concentrated at the bottom of the market in small “mom and pop” service enterprises that often subsist from payroll to payroll with workers subsidizing the affordability gap with sub-minimum or poverty wages,” Aquilina Soriano-Versoza, executive director of the Pilipino Workers Center of Southern California, said.

By leveraging disruptive moments of change created by the COVID-19 pandemic, CoLab can help build economic democracy through centering equity and human development in the long-term care sector.

Challenges in Long-Term Care

The COVID-19 pandemic continues to be a significant challenge in the long-term care sector. According to a 2021 report from the Home Care Association of New York, home care agencies in New York experienced an estimated loss of $200 million since the onset of COVID-19 [from late 2020 to 2021].

Meanwhile, the number of older adults in the U.S. continues to grow.

In 2019, 16 percent of the U.S. population was age 65 or older, and that figure is expected to grow to 21.6 percent by 2040. The 85 and older population is projected to more than double from 6.6 million in 2019 to 14.4 million in 2040, a 118 percent increase.

Nearly 90 percent of adults want to age in place, resulting in an increased demand for home care and hospice providers. Many agencies were not able to meet this demand. Revenue loss, increased demand and worker shortages continue to be the trend for home care agencies throughout the country.

That means that workers are often forced to choose between further financial instability and risking their own health to provide services to their clients. Many have no choice but to subject themselves to significant health risks in caring for those especially susceptible to COVID-19. There have been reports of nursing home workers and home care workers leaving their positions due to low compensation and increased job-related stress.

However, this was not a new trend – workers were already overworked and underpaid prior to the pandemic, which exacerbated an existing workforce shortage. In New York, 67 percent of home care aides turnover annually and 56 percent of certified nursing assistants report on the job injuries due to lack of training and workforce shortages. In fact, nursing assistants are nearly eight times more likely to experience workplace injuries than the typical U.S. worker. Because work-related illness is considered a workplace injury, COVID-19 caused injury rates among nursing assistants to increase by more than 300 percent from 2019 (299 injuries per 10,000 workers) to 2020 (1,014 injuries per 10,000 workers).

In California, the median wage for long-term care workers is $3.86 less than the median wage for all other occupations with equivalent entry-level requirements. Additionally, 44 percent of all direct care workers earn below 200 percent of the federal poverty level.

“As I started to work in the care industry I noticed that the majority of the caregivers were women and over 90 percent of those women were women of color,” said Carmen Roberts, executive vice president of SEIU 2015.  “I realized then that this is like life in America, where they’re disenfranchising folk by not either paying attention to what you do, not respecting you, not wanting to pay you, not giving you benefits – the whole gamut.”

These dynamics have their roots in structural racism and patriarchy, which have assigned low value and no protections for work traditionally performed by women of color, who today make up the majority of the workforce in the long-term care sector.

The pandemic also continues to impact older adults and people with disabilities. Calling it the “Great Retirement,” a 2022 AIG study found that the COVID-19 pandemic drove millions into early retirement. While health concerns were a critical reason, many recent retirees also cited job loss and a host of financial concerns. A 2022 study from the Administration for Community Living also found that people with disabilities were disproportionately affected by the hardships brought by COVID-19.

With a lack of workers, family caregivers often take on additional responsibilities. These responsibilities, often taken on by women, can cause both health and economic impacts as people are forced to drop out of the workforce.

Transforming the Sector

Transforming the sector will take time and will require a broad set of stakeholders to be successful. The CoLab Fellowship creates an intentional space for fellows to come together and collaborate.

“It’s an opportunity to think about how to change systems that are broken,” said Kevin Prindiville, one of the Mel King Fellows and Executive Director of Justice in Aging.

In the short term, state legislatures are in a position to provide relief to workers through long-overdue wage increases in the long-term care sector. In New York, Mel King Fellows worked through state officials to pass a $3 increase in hourly wages for home care workers, the largest wage boost in the nation. In California, Mel King Fellows are hoping to similarly pass a $5 wage increase for public sector care workers. In California, Mel King Fellows are also working to secure fair wages, effective workforce training and development, and pathways for worker ownership for care workers.

In response to the myriad forms of misinformation and lack of a gender/race lens in public narratives regarding the long-term care sector, fellows have begun publishing a collection of op-eds, videos and other popular education materials that communicates the nuances and opportunities in easily digestible ways.

Watch their first video “The Crisis and Opportunity for Community Wealth in Long-term Care.”

In the long term, fellows from New York and California, in partnership with LTSS experts Marc Cohen, co-director, LeadingAge LTSS Center at UMass Boston, and Ben Veghte, director at WA Cares Fund, will collaborate with MIT faculty and students to establish a planned LTSS financing model in New York and California that centers on equity by addressing many of the job quality and wealth disparities that are the focus of their respective organizations.

In addition, Mel King Fellows Brendan Martin, co-director of Seed Commons, one of the largest investment funds focused on financing worker ownership, David Hammer, executive director of the ICA Group, a leader in co-op development in the LTSS sector and Adria Powell, CEO of Cooperative Home Care Associates (CHCA), a best-in-class home care organization and the largest worker-owned cooperative in the U.S., along with Aqulina Soriano-Versoza, executive director of Philipino Workers Center of Southern California will work together to establish a co-op conversion and expansion fund focused on the LTSS sector.

Martin, Hammer, Soriono-Versoza and Powell will focus on scaling and expanding CHCA and the Pilipino Worker Center’s home care co-op model. The CoLab and Fellows will support both entities with the business development strategy, landscape analysis of their respective market opportunities and readiness for scaling. Fatemeh Hosseini, director of CoLab’s Mel King Fellowship Program, noted that in both California and New York, labor organizations like SEIU 2015, UDW and SEIU 1199 will play a critical role in building strategy and organizing political support.

Advancing Solutions

Expanding access to long-term services and supports requires coalitions and resources. Worker co-ops offer a solution to workforce shortages in the sector, care and job quality. Funders and investors in the private and public sector can support scaling existing worker co-ops through business growth and mergers and acquisitions. State governments can invest in working groups, studies and adopt legislation to expand long-term care access through alternative state financing models.

In April, the Mel King Fellows will come together in Boston at the MIT campus to move projects and prototypes to the next stage. During this time they will have the opportunity to learn from a panel of experts on state-based campaigns and scaling worker-owned business in LTSS and to conduct learning exchanges with thinkers and providers in the disability justice landscape and to engage in transformative conversations that will advance each prototype and harness the power and wisdom that is held by the fellows. To learn more visit www.colab.mit.edu/mkcf.