This increased privatization hasn’t benefited the recipients of home healthcare. According to some studies, for-profit home-care agencies are costlier for Medicare than nonprofit ones, and the quality of care is worse, with more patients requiring repeat hospitalizations.

There is, however, a growing trend in home healthcare that cuts against the spread of for-profit care provision. Worker-owned home-care agencies like CHCA differ from both for-profit and nonprofit agencies in a number of meaningful ways. In worker-owned home-care agencies—most often structured as worker co-ops—professional caregivers earn an hourly wage but also shape the training protocols, cultural expectations, and financial management of the company. Home-care workers in these agencies make, on average, $2 more per hour and have a 38 percent annual turnover rate. These care workers stick with their jobs not only because the pay is better but also because the jobs themselves are structured in ways that make them feel more respected and effective.

Clara’s current client is Sam, 47, who lives in a one-bedroom apartment on the 13th floor of St. Margaret’s House, a large building in Manhattan’s financial district that houses tenants who pay rent with Section 8 vouchers. Sam has cerebral palsy and uses an electric wheelchair. He dreams of running his own after-school program someday, but for now he spends most of his days with Clara gazing out at the South Street Seaport and talking about everything under the sun. At night, after Clara has headed back up to Washington Heights, he can hear the concerts at the nearby Rooftop at Pier 17; last summer, he even caught one of his favorite bands, Green Day.

Medicaid has been funding Clara’s work supporting Sam four days a week since 2023. She helps him with his laundry, goes to the supermarket or medical appointments with him, cleans his sparse apartment, helps him shower, and cooks meals for him—including his favorite of her dishes, baked salmon in coconut milk.

When I spoke with them in Sam’s apartment, Clara had just returned from a visit to the Dominican Republic. (CHCA has provided paid vacation time since it was founded, which is not the industry standard.) While Clara was gone, Sam had substitute caregivers who were nice enough, but he refused to eat anything but their breakfasts because, he says, “No one cooks like Clara.”

“She’s like my mom,” Sam adds, and Clara lights up. “She’s caring, inviting—with her, you feel comfortable talking to her about anything. She’s family.”

Sam’s beloved mom died of gallbladder cancer, which she contracted while working on the World Trade Center site after the 9/11 terrorist attacks. She was known for being what Sam calls a “helicopter parent”—always hovering over him to make sure he was OK. His aunt, by contrast, pushed him to take risks and be independent; she died last year as well. Clara is Sam’s lasting connection to the spirit of the fierce women who raised him. “When Clara retires, I’m retiring,” he jokes. “I’m leaving New York!”

Sam has family in North Carolina who have told him he could move there if he needs a change of scenery. No matter how good the views are from his apartment, he doesn’t feel like it would be worth it to stay if Clara leaves. “I always tell her, ‘If I win the lottery, I got you,’” Sam says. “I got her.”

Though there are only 25 worker-owned home-care agencies in the United States, the number has sharply increased in the past five years. This is partly a result of the Covid-19 pandemic. Care workers often lacked adequate personal protective equipment, pandemic-specific training, paid time off, or compensation for hazardous working conditions. Having learned just how little value employers placed on their well-being, many care workers have sought out existing co-ops, been part of efforts to transform care companies into co-ops, or created their own from scratch.

Academic institutions, advocacy organizations, and networks of worker co-ops have heeded this wake-up call—leading to some real momentum in the sector. At an annual national conference, worker-owners gather to strategize about how to increase their ranks and raise their profile (the 10th such conference will be held in Tacoma, Washington, in October), and many coalitions have emerged to help worker-owners exchange information about best practices, welcome new organizations into the movement, and collectively solve some of the sustainability challenges they all face. And nonprofit funders are also starting to wake up to the nature of what care advocate Ai-jen Poo calls a “triple dignity investment,” in which care workers, family caregivers, and care receivers all benefit. The foundation Next50 recently announced a $500,000 grant to the Rocky Mountain Employee Ownership Center to launch a worker-owned home-care agency in Colorado.

Meanwhile, the Trump administration has gutted Medicaid at a time when there is already a major shortage of programs that serve seniors and people with disabilities. The so-called One Big Beautiful Bill will cut federal Medicaid spending by $1 trillion over the next 10 years, according to the health-policy organization KFF. Some states will attempt to make up the difference, but many count on Medicaid for a significant portion of their budget and will have to cut services. Rural areas will be the hardest hit.

Our elders, family members, friends, and neighbors with disabilities don’t have a system that dignifies them, and those who take care of them don’t have a system that dignifies the work they do. But it doesn’t have to be this way, as worker-owned care agencies are making clear. As Clara says, her time with CHCA has “made me feel safe, like I have a voice.”

CHCA, which was founded in the Bronx in 1985 by the labor organizers Rick Surpin and Peggy Powell, is the oldest and largest worker-owned care agency in the United States. When I spoke with Powell, she was ending a long day of meetings in her role as a senior adviser at PHI, an organization she helped create, which focuses on increasing the quality of direct-care jobs through research and policy advocacy. Considered the godmother of this growing movement, Powell told me about her winding journey to home healthcare. She was raised in the 1960s alongside five brothers and sisters in Harlem and Queens by an Italian American mother and a Black father—factory workers who became civil servants (neither made it past middle school).

After graduating from City College, Powell worked as a secretary at the national headquarters of the Episcopal Church, which at the time had undertaken an initiative to address the root causes of poverty. Her mentors quickly realized she could do more than type 70 words a minute, so they asked her to join mission trips to Latin America. Those trips were “eye-openers” for her, Powell says; she watched poor Haitians siphon water out of the hotel pools for drinking. The poverty there was so much more visible than in the United States.

After she returned home, Powell went into community organizing but soon grew “disenchanted with fight-back politics.” When she met Surpin, they were both organizing for economic justice, particularly among restaurant workers. Neither knew anything about home healthcare, but they realized that, like food-service work, the jobs were easy to access and low-paying—an ideal vehicle for reaching the kinds of workers they were trying to empower. They decided to start organizing in that sector, setting up an agency owned by workers whom they would train and work alongside.

Powell was in charge of developing the training for the founding worker-owners of CHCA. Influenced by a paper by the missionary Carman St. John Hunter, who advocated “learner-centered education,” Powell shaped the organization’s ethos of welcoming workers with questions like “What do you already know about caregiving? Who have you taken care of? What did you do when you were taking care of them?”

This kind of Socratic training is a natural fit in an industry that delivers what is, after all, a universal part of human life—care. “The first place you start is with the learner’s experience,” Powell says. “Then you introduce the home-health context and ask, ‘What do you see? What are the connections between your experience and this job?’” The business structure makes them owners, but it is the learner-centered training that makes them feel like experts.

Today, CHCA is run by Powell’s daughter, Adria. Adria studied psychology and Black studies at Boston College and anticipated becoming a therapist, but her path began to change after she spent summer vacations back in New York working at CHCA. “I’m the granddaughter of a domestic worker. I’m clear that this work isn’t paid [enough], because it is steeped in a history where this work was done for free, done on the backs of slaves,” Adria says. “Getting people to understand and value home care is incredibly challenging because of the people who do the work.” Today, home healthcare is performed primarily by middle-aged women of color. According to PHI’s annual report on the evolving care workforce, 85 percent of home-care workers are women, and the median age is 48; 33 percent are immigrants, and 40 percent are multilingual. In addition to advocating for worker ownership, CHCA has also pursued unionization as a means of improving standards for workers. In 2003, CHCA members voted to unionize with SEIU 1199, the 450,000-member healthcare division of the Service Employees International Union. With SEIU, CHCA successfully agitated for legislation that has raised home-care workers’ pay and labor standards in New York State. “Achieving worker justice and power requires thinking beyond one business at a time,” Rebecca Lurie, the founder of the Community and Worker Ownership Project at the City University of New York, wrote in an article for Nonprofit Quarterly. “Opportunities to build economic power will be missed if worker ownership is not aligned with broad-based representation for frontline workers.”

Forty years after its founding, chca is still going strong, employing 1,600 workers, all in the New York City area, more than half of whom have opted to be worker-owners. The other worker-owned care agencies don’t employ nearly as many people as CHCA—on average, they have fewer than 50 employees. And in the for-profit home-care sector, there is increasing consolidation. The Chicago-based firm Waud Capital Partners acquired Senior Helpers, a home-care agency with more than 15,000 employees in 44 states, in 2024, and last year it acquired MedTec Healthcare, an Illinois-based company with 1,000 employees. Competing with such consolidated companies is tricky for tiny worker-owned organizations.

Cost is a huge issue for the industry. According to AARP, the average annual out-of-pocket cost of home care in 2021 was roughly $42,000 per person, for 30 hours of weekly care at $27 an hour. (As expensive as that may sound, it is still far cheaper than nursing homes, which have an average annual out-of-pocket cost of $108,000 for a private room.) Medicare doesn’t cover most types of home care, particularly those that assist with “activities of daily living,” or ADLs—things like bathing, dressing, and toileting. Seniors who qualify for Medicaid or get support through Veterans Affairs can get some home care paid for by the government, but otherwise most families are left making impossible choices: going into debt; leaving their parents alone when they know they need more support and hoping it will all be OK; cycling in and out of the hospital when it isn’t; or providing the care themselves, when they can. Most estimates indicate that over 60 percent of home-care costs are paid for out of pocket.

Low Medicaid reimbursement rates are one of the ethical and practical headwinds for this movement. These rates vary and are determined by a combination of federal and state contributions, but they are generally lower than the rate that agencies receive from private-pay clients. Grassroots cooperatives are too small to rely on Medicaid clients alone or even as a majority of their business, but these are often the clients that worker-owners would most like to serve: their neighbors, friends, and community members.

“I have always felt called to serve people from underserved or marginalized communities who need support to remain safely in their homes, but many of them rely on public funding or insurance programs, and these funding structures place limits on service hours, wages, or continuity of care,” says Terrell Cannon, the training coordinator and a worker-owner at Home Care Associates in Philadelphia. “It makes it hard to sustain long-term, consistent support despite real need.”

The national network of folks working to expand these cooperatives are addressing such challenges. The ICA Group, founded in 1977, which helps workers form cooperatives of all kinds, has a national initiative called Elevate dedicated to home-care agencies. It links small cooperatives all over the country so they can trade tips and share resources. It’s also forming what its members call “secondary cooperatives,” in which co-ops share a back office and therefore save on overhead and on the time spent learning how to run their businesses.

Vivid Life Home Care is a thriving secondary cooperative based in Los Angeles that links five home-care agencies with a total of 52 worker-owners. Led by longtime labor organizer Aquilina Soriano Versoza, Vivid Life has similarities to a franchise model, but without the top-down ethos or the competition among franchisees. Versoza and her collaborators spent nearly two years designing the structure of the secondary cooperative so that it would enable members to have real worker power but not overwhelm those who want to be caregivers rather than business operators.

Versoza wants Vivid Life to be poised to become the designated agency to partner with California if and when the state creates a universal public long-term-care program. Her goal is to have a cooperative operating in every region of the state within five years. “We need to transform long-term care,” Versoza says. “It’s part of being able to be really human.”

California would be following in the footsteps of Washington State, which is home to multiple worker-owned care agencies and established a first-of-its-kind public long-term-care insurance program, WA Cares, in 2019. But worker-owned home-care agencies are not confined to the coasts: Rural Wisconsin has a robust worker-owned care presence as well.

We know that worker-owned agencies create better jobs and better patient outcomes, but there isn’t sufficient research yet on how they accomplish that. Geoff Gusoff, a clinician and researcher based in Los Angeles, is currently conducting just such a study, funded by the National Institute on Aging. “We have a sense from talking to people that employ these co-ops that they think the care quality is great. Industry data shows patients stay with co-ops twice as long compared to traditional agencies, which may suggest significantly higher care quality and patient satisfaction,” he explains. “But we don’t know exactly why or how the co-ops achieve these results.”

Gusoff, like Peggy and Adria Powell, became interested in worker-owned care through faith and family. He grew up with his grandmother, who was a domestic worker. During graduate school at Boston College, he studied liberation theology and helped organize janitors. He went on to get dual degrees in medicine and business from the University of Pennsylvania and continued to organize, this time with farmworkers. For him, liberation theology and worker ownership are closely linked: “The fundamental insight of liberation theology is that it undoes hierarchy,” he says. Worker co-ops’ openness to information from all sources seems to be a major reason their home-care workers deliver better care. In more traditional settings, “we don’t get information correct because the people that know the most are able to say the least,” Gusoff explains.

A professional care worker may spend eight hours a day—sometimes more—with a client, which gives them intimate knowledge about the client’s health. But at traditional home-care companies, the workers are rarely included in conversations with doctors, nurses, or social workers or asked to share their observations about the client’s care.

While data about worker-owned home care may be lacking, the benefits are palpable in practice. Clara cares deeply about her clients and believes she has a sixth sense about how they’re doing. During the pandemic, she cared for an elderly person whose health appeared steady, but she had a bad feeling and alerted the family. Three days later, the client died in a hospital. When Clara walked into Sam’s apartment recently, he told her everything was fine, but she could tell from the expression on his face that he was in pain. Eventually, he acknowledged that his feet were killing him.

In 2023, my family started to come to terms with the fact that my mom could no longer care for my father, who suffers from frontotemporal dementia with Lewy-body dimensions, on her own. As with so many isolated family caregivers, her own mental and physical health was starting to fail. My brother, mom, and I took a big swing at a solution—moving all of our families within three blocks of one another in an attempt to take care of my dad collectively.

We managed it for about a year through a patchwork of care. For a season, we found an independent home-care worker who visited a couple of days a week. During another season, we used an excellent day-care program in a neighboring town, but it shut down shortly after we found it because low Medicaid reimbursements rates left it underfunded.

My dad’s symptoms worsened, as did all of our mental health. My mom couldn’t get a single night’s continuous sleep or spend a minute alone without worrying that my dad would walk out the front door and wander off. Caught between my dad’s needs and those of my 9- and 12-year-old daughters, I felt constant stress as a “sandwich-generation” caregiver. Slowly, we admitted to ourselves that we needed to find a memory-care facility.

As I was touring facilities all over the San Francisco Bay Area, I knew to ask about cost, activities, food, and caregiver-to-resident ratios. What I didn’t know to ask about was business structure. But when I walked into the Elder Ashram, a worker-owned residential facility founded in 2019, I felt something qualitatively different in the air. It was present in the interactions between the caregivers and the residents—what I can only describe as a familial feeling. It was present in the interactions among the caregivers too: lots of laughter and an easy orchestration of everyone’s talents to engage the residents and keep things lively.

Kirk Rivera, until recently the facility’s coordinator of resident relations, wouldn’t just send me a form about my dad’s ADLs, as a for-profit chain might; he e-mailed me a video of my dad singing “Swing Low, Sweet Chariot” and called to check in if he hadn’t seen me in the hallways in a while. Many of the Elder Ashram’s professional caregivers have worked there since its founding.

After my dad had a spate of falls, I sat around a table with a group of nine staff members to discuss potential solutions. The care workers were just as respected, and often even more insightful, than the MD and the nurse in attendance. One care worker noted that bed alarms, which are used in bigger facilities, can be agitating to people with dementia and suggested increasing the number of times the night-shift worker checked on my dad from four to eight to get more information about his patterns. High-status degrees can mean little when trying to improve a vulnerable loved one’s quality of life.

The movement for worker ownership in direct care is poised to grow even bigger. The ICA Group wants to see 50 worker-owned home-care agencies by 2030 and to double that number by 2040. To that end, Katrina Kazda, who leads the organization’s cooperative work, wants to create an acquisition fund whereby ICA’s Elevate initiative could buy companies and help caregivers to become owners. But she recognizes that even rapid growth in the number of co-ops won’t fundamentally transform the sector. “The entire industry is moving towards consolidation, so one co-op here, there, and everywhere can’t solve the problem,” Kazda says.

Even in this politically polarized time, worker ownership is embraced by people across the political spectrum as a solution to unprecedented wealth inequality. Nearly three-quarters of all respondents (including 74 percent of Democrats, 72 percent of Republicans, and 67 percent of independents) in a national survey said they would rather work for an employee-owned company than for shareholders or the government. “Americans disagree about a lot of things, but this is not one of them,” says Joseph Blasi, the director of the Rutgers Institute for the Study of Employee Ownership and Profit Sharing.

Vermont Senator Bernie Sanders, one of the most enthusiastic backers of co-ops and employee stock-ownership plans (ESOPs) in Congress, is the lead sponsor of the Employee Ownership Financing Act, which would create a loan program to expand financing options for workers seeking to buy the businesses they work for. At a Senate committee meeting last year on employee ownership, while talking about ways to make the formation of ESOPs easier, Ohio Republican Senator Jon Husted said, “ESOPs are one of the most virtuous forms of capitalism in America.”

Still, Adria Scharf, a researcher who works with Blasi at Rutgers, cautions that “we can’t overburden the worker-cooperative structure and expect it to solve all the systemic problems.” Indeed, increased public funding will be key to addressing America’s care crisis. The last significant effort to transform the funding landscape was in 2021, when President Joe Biden proposed the Build Back Better bill, which would have stabilized and strengthened the home-care sector. As the sector now waits for another big push at national reform, local efforts show what is possible. “These precious organizations are just hidden in the shadows, and they are so different,” Scharf says. “They’re so beautiful.”

Peggy Powell knows that cooperatives represent a tiny fraction of the larger sector, but she doesn’t see scale as the only measure of significance. “Coming out of working-class roots, coming out of roots where you know you have very little control over many things in your life…putting one foot in front of the other is the victory,” she says. Her daughter Adria is still fighting for full-scale transformation. “We need access to capital, technical assistance, co-op-friendly policy, robust and strong cooperative networks, and investment in leadership and development pipelines for workers and worker-owners in the cooperative sector,” she says.

“Worker-owned home-care service delivery in the US,” she adds, “is the cornerstone of a far more equitable and caring economy.”