After working for over sixteen years in the home care industry, Hui Ling Chen, a home care attendant in New York City, is rallying against the city’s permission of the twenty-four-hour workday system. The system, she claims, is “inhumane for both the patient and the home attendants.” 

Chen is part of a much larger fight that seeks to establish fair wages and humane working conditions in the home care industry. The struggle isn’t new: it has roots going back decades. But as home attendant shortages worsen and the United States population ages, it is more important than ever for home care attendants and other live-in employees to continue standing up against their agencies’ and employers’ wage theft and exploitative treatment. 

This is a fight in cities across the country. In March 2024, in New York City, the No More 24! campaign completed a six-day hunger strike with the demand of ending twenty-four-hour workdays. Led by the Ain’t I a Woman?! Coalition, this movement seeks to end the twenty-four-hour workday, which it claims destroys the health and lives of women-of-color home attendants.

Very rarely are workers compensated for all of their hours of labor. 

Our nation’s care infrastructure relies heavily on home care attendants. These workers primarily care for aging or disabled patients, who often require extensive help for tasks such as eating, bathing, and general movement. As a result, home care attendants often perform round-the-clock work and may be designated as live-in employees who work, eat, and sleep in a patient’s home. However, very rarely are workers compensated for all of their hours of labor. 

Home care attendants are entitled to protections that are not being enforced.

The New York Department of Labor has determined that it is legally permissible for agencies to pay “live-in employees” for as little as thirteen of the hours in a twenty-four-hour shift as long as the attendants are given eight hours of sleep time—with five of those being uninterrupted hours—and three hours for meal breaks. Otherwise, each hour in a twenty-four-hour workday must be compensated. 

Yet while the former case seems to offer a good balance of work and rest, the nature of the job prevents live-in home care attendants from receiving their allocated rest hours. Many  patients’ needs cannot wait until an attendant has finished their eating or resting hours. When that is the case, employers are required to pay their workers for the full twenty-four hours worked. Unfortunately, this is rarely enforced, and attendants are often working twenty-four-hour workdays not only with little to no rest, but also being paid a fraction of what they’re due. Notably, many of these home care attendants are elderly or disabled themselves—or become disabled in the process of their work. Many are also immigrant women who are low-income and not fluent in English, and so struggle to defend themselves against employers and employment agencies with legal counsel.

Without adequate labor protections, both home care workers and their patients are suffering.

The shortage of home attendants, coupled with the fact that many are lacking the financial, psychological, and physical support they need, not only results in consequences for the workers themselves: it can also decrease the quality of care patients receive. Exhausted and underpaid workers are not able to provide their best work. Many of the testimonies from the No More 24! campaign, as well as from other campaigns across the nation, express their desire to ensure their patients are treated with dignity and respect. However, many cannot provide it because of the grueling circumstances they are forced to work under and the injuries sustained on the job. 

Many of the testimonies from the No More 24! campaign, as well as from other campaigns across the nation, express their desire to ensure their patients are treated with dignity and respect.

Stories from current and past workers are downright horrifying. Testimonials cite women who’ve lost pregnancies due to stress and developed chronic back and hip pain. Many, if not all, cite the lack of uninterrupted sleep as the cause. A translation of Mei Kum Chu’s testimony, for instance, spotlights the failure of the system to provide support for both her and her patient (emphasis added): 

My first patient had many illnesses. The person in charge of the assignment told me I had to turn her body over every ninety minutes every night. One day, while helping her go bathe, her legs had no strength and to make sure she doesn’t fall, I injured my wrist. I was unable to work for more than half a year. The second patient also needed twenty-four-hour care. I was unable to sleep because she called for me every one to two hours. Because I could not get proper sleep at night, and got busy and tired, I slipped in the shower and was injured. I still assisted the patient because her son lived far away and did not visit her often. Without me, she would live very painfully and with no dignity. But after a while, my injury and pain became so much. I had to retire.

Acuzena Deras, a home care attendant of nineteen years, had a similar experience (emphasis added):

My daughters pleaded with me to leave the job but I said I couldn’t leave. It was the only way I can support my family. My daughters saw the toll it took. They said, “you put up with so much abuse to your body.” If you try to close your eyes for even a minute, the patient cries out. The most I slept on a shift was an hour. I had many patients throughout the years and many of them were very difficult cases. I have chronic back pain and hip pain. I take medications and I am completely dependent on them. If I could turn back time, I wouldn’t do those twenty-four hours if I had the chance. Never.

Courts have weakened labor laws that would protect home care attendants.

New York was the first state in the nation to establish a Domestic Workers’ Bill of Rights, a bill passed in 2010 to extend overtime protection, establish paid rest days and harassment protections for home care workers, nannies and house cleaners. California—a state where similar stories of exploitation are coming from home care workers—was quick to follow. But while fair working conditions are now on the books, in practice, challenges remain.

New York has seen two class action allegations against home care agencies in the past few years. As a result of the rulings in the court cases and a 2017 Department of Labor Emergency Rulemaking, the laws remain in effect, but the state has essentially been given permission to ignore their enforcement.

This response ultimately exemplifies the choices made by state actors to uphold inhumane working conditions and conditions that perpetuate wage theft. The poor working conditions and unlivable wages have pushed the industry into a negative feedback loop: workers don’t want to stay in the field with such monstrous conditions and low pay, and the workers that do stay are then subjected to longer hours and less pay to meet the demand given the overwhelming labor shortage, leaving many employees exhausted and at risk for injuries on the job. This also puts patients at risk of poor care.

This has resulted in low worker retention rates across the industry. With little pay and poor working conditions, experienced home care attendants are choosing to leave the field. This makes the labor shortage that’s been present since the 1980s even worse. 

Steps must be taken to increase wages and provide incentives to protect workers.

To reduce this labor shortage and protect both workers and patients, the first step is to increase the pay rate. When the American Rescue Plan Act (ARPA) was passed with increased funding for home and community-based services (HCBS), forty-eight states reported raising payment rates and forty-one states offered incentive payments to workers. The law also provided a boost to the existing care infrastructure. With extra funds, states were able to invest in the infrastructure needed for workforce recruitment and retainment programs. This trend needs to continue. ARPA’s HCBS funding is set to expire in 2025, so states are operating with a temporary solution to a long-standing problem. 

With extra funds, states were able to invest in the infrastructure needed for workforce recruitment and retainment programs.

Low wages contribute to the problems of worker recruitment and retention. Real wages for home care workers in New York State, for instance, rose by 22 percent, or $2.56 an hour, from 2011 to 2021, but still fall well below a living wage. According to the New York Times, the pay in the industry is so low, more than half of workers qualify for public assistance, such as food stamps or Medicaid. Nationally, one in five home care workers live in poverty and nearly half are low-income.

What also needs to be done is enforcement of the law to ensure workers are compensated for their labor, as well as creating a system where employers are not incentivized to cut corners on worker pay. Currently, the industry is reliant on Medicaid to fund its services at the state level. As Medicaid is the largest funder of home care services and nearly half of all states now use managed care to finance and administer their Medicaid home care programs, budget cuts only serve to hurt workers in the industry. When there is little funding for home care agencies to pay their employees, employers are incentivized to exploit workers by cutting wages and forcing long working hours.  

While the labor shortage worsens, the need for care workers is projected to increase.

It’s not as if home care isn’t in demand either. In fact, it’s one of the fastest growing industries in the United States. According to the National Center for Health Workforce Analysis, the demand for direct care workers is projected to increase by 48 percent for nursing assistants, 43 percent for personal care aides, and 42 percent for home health aides between 2020 and 2035. Despite the growing demand, between 2013 and 2019, the number of home care workers per 100 HCBS funded by Medicaid (the primary payer for long-term services and support) declined by 11.6 percent. As the general population continues to grow older, elders and younger people with disabilities will find it more challenging to receive the care they need—so long as the shortage of care workers persists. 

If we want to create a sustainable infrastructure for both attendants and patients, then changes must be enacted quickly. Our population is becoming increasingly older, making the care infrastructure more vital than ever. Funding and reducing incentives for employers to break the law must be prioritized in order to fix the long-standing problems in the home care industry. Without it, we are dooming the most vulnerable parts of our population and the groups that care for them.

Acknowledgments: The author is grateful for the careful review and feedback offered by Reena Arons from the National Domestic Workers Alliance.