In the summer of 2019, a doctor referred my grandmother for home health care. By 2021, she was bedbound, unable to feed and clean herself, and was assigned two home health aides (HHAs). Both were women who had recently immigrated to the United States. I cannot imagine how my family would have managed my grandmother’s care without support from home health aides. Caregiving is a difficult, and as my grandmother knew, deeply undervalued job.  

My grandmother, too, was once a home health aide in New York City. She was proud of the work but could not hide how tired she was at the end of the day, or how much pain she sometimes felt in her arthritic hands and swollen feet.

As for many HHAs, her care work did not bring financial security. In the final decade of her life, my grandmother was dually eligible for Medicare and Medicaid, and paid for her groceries using food stamps. 

Over the course of a lifetime, we will all need care. To meet the growing crisis in care provision, we must radically alter labor conditions in the home healthcare industry. 

Exploitation in the Home Healthcare Industry

Across the country, home health aides are underpaid for their labor. In New York City, the site of my doctoral research, home health aides are paid minimum wage.. Even after the minimum wage was raised to $15 per hour, to keep up with the expensive costs-of-living in the region, New York City’s HHAs continue to live through poverty. In 2010, nearly 40% of New York state’s HHAs relied on social welfare benefits (such as food stamps and housing vouchers) to support themselves and their families. They are nearly twice as likely as other workers to be uninsured (27% of aides versus 15% of other workers). HHAs provide essential care and yet often find themselves without access to necessities. 

Unions are fighting to change the ways HHAs are compensated. A New York State policy allows HHAs to be paid for just 13 hours of a 24-hour shift, based on the erroneous assumption that aides are able to rest and take meal breaks while their charges are sleeping. In response to this policy, the Home Care Division of 1199 SEIU consolidated 42 claims into a single arbitration case and, earlier this year, won $30 million dollars in backpay for 100,000 current and former HHAs in New York.

New York State’s own Attorney General challenged the same policy in 2021. An investigation into Intergen Health, LLC and Amazing Home Care Services, LLC revealed routine failures to appropriately schedule and compensate for overtime, short shifts, 24-hour shifts (also known as “live-in” shifts), and multiple shifts in a single day. Over 12,000 home health aides from those agencies were subsequently awarded $18.8 million in unpaid wages. Combatting wage-theft is important, but the live-in shift policy remains in place, with the stipulation that employers must ensure that HHAs get 11 hours of rest, including 5 hours of uninterrupted sleep.  

The work of HHAs is devalued due to gendered, racialized, and xenophobic biases. In New York and across the country, direct care workers are almost always women, often immigrants, and, more and more, usually immigrant women of color. As Evelyn Nakano Glenn and Eileen Boris have suggested, care is publicly imagined to be gendered labor confined to the private domestic sphere. These definitions of care hinge on the assumption that women are natural caregivers, and do not have to be fairly compensated for their work. 

The argument that direct care work is low-paid because it is “unskilled” labor obfuscates the physically strenuous and emotionally taxing nature of homecare.

Home health and personal care aides wash, dress, cook and clean for, feed, and change the soiled diapers of adults who are unable to perform these activities of daily living on their own. This work requires heavy lifting, a strong stomach, and unyielding patience. 

Home care work is very much an issue of public importance, as such care is largely funded via taxation, including payroll taxes. Nationally, 76% of homecare spending was covered by Medicare and Medicaid in 2017. In New York, 87% of home care costs are covered by the state’s Medicaid program.  Far from being a “private” concern, the provision and quality of home health care is a question of our collective responsibility to each other. 

A Way Forward for Home Health Aides

The home health aide industry is facing a national labor shortage. At the same time, elders (and their families) are increasingly opting for home-based care over nursing homes and assisted living facilities. In what Martha Holstein calls our “looming dystopia of long-term care,” labor and eldercare activists are pushing for several policy changes that would assist elders, families, and the healthcare industry through “the graying of America.” 

Key among these proposals is the Domestic Workers’ Bill of Rights, which would ensure paid sick leave, meal and rest breaks, protections against workplace harassment, abuse and lost pay, and a clarification of roles and responsibilities.  Some advocates are also fighting for HHA career ladders, such as specialty training for the care of both chronic and acute conditions, and advanced roles as trainers and teachers. 

As seen in the New York HHA cases, stronger and more prolific unionization of home care workers across the country has great potential for improving working conditions. HHAs represented by labor unions are far more likely to have health insurance through their employers (51% of union workers versus 31% of non-union workers). The Protecting the Right to Organize Act (PRO-Act), which passed in the House of Representatives, would “strengthen federal laws to protect workers’ right to organize a union, and bargain and for negotiate higher wages and better benefits.” With nationwide support for labor unions at 68%, voters and advocates should vocally support the PRO-Act.

Many advocates and scholars have called for greater investment in care infrastructure. Yet, legislative efforts to enact this ambitious agenda have stymied. A plan to “solidify the infrastructure of the care economy” was initially part of the American Jobs Plan proposal released by the Biden Administration in the spring of 2021. The plan argued for creating “new and better jobs” with higher wages for HHAs, and thus attracting additional workers to an industry in desperate need. Despite their popularity, these provisions were not included in the Bipartisan Infrastructure Investment and Jobs Act. 

The solution to our nation’s eldercare crisis is comprehensive care work infrastructure legislation: to invest in long term care, including Medicare and Medicaid funding, so that home health agencies can properly and fairly pay their workers.

Congress must ensure a living wage, benefits, and protections for care workers, including workers’ rights to organize. Doing so will not only shore up the home health workforce, but will improve the lives of the 4 million homebound elders in the United States.