My mother (Ruth Finkelstein) used to say that she fell into the next phase of her life. Like many independent older adults, a fall catapulted her from a fulfilling life in her lovely apartment into the gray zone of assisted and then institutional living. In between the two phases were several months when direct care workers helped me (an overwhelmed daughter with school-age children and full-time job) to provide the round-the-clock care she required.
Needless to say, this care was not reimbursed by any health insurance to which we had access, a story for another day. Today, I want to confess how I filled that gap in care. It is not a story I am proud of.
A friend introduced me to an aide (let’s call her Angel) in the hospital where she worked. Angel organized other aides in this community hospital to provide exactly the service we needed—kind, competent, reliable carers to help my mother wash, dress, prepare meals, use unfamiliar mobility devices, and reorient her social universe. Some of Angel’s colleagues moonlighted to supplement low-wage jobs. Others worked entirely for cash pay (“off the books”) for up to 24 hours a day. Angel selected carers, coordinated coverage, kept track of hours, and dispersed payment, which was enormously helpful. My responsibilities were to get the cash to pay everyone, do my mother’s errands, and visit. Once I trusted Angel and she assured me the carers would be like her, I didn’t ask many questions.
However, as my professional interests turned to aging, my health policy advocacy work expanded into the caring economy. Working with the Domestic Workers Alliance, Caring Across Generations, and the Caring Majority raised my consciousness about the exploitation of the direct care workforce, and I began to think about the times I had employed off-the-books direct care workers myself.
Back then, I had assumed a dichotomy: people worked off the books because their work was deemed not legal (sex work, unlicensed vendors) or because they were deemed not legal (undocumented); otherwise, people worked “on the books.” The reality is significantly more complicated. Workers who do not have adequate documentation to collect benefits from the Social Security system nevertheless pay into it (in 2022, $25.7 billion came from immigrants without a documented immigration status; Rachamallu, 2025). Workers who do on-the-books work supplement their wages with off-the-books work or alternate between the two.
How might ‘off the books’ work contribute to the direct care worker shortage, and could it explain observed low Social Security benefits for women?
If this issue is ubiquitous, why focus on the direct care workforce? Direct care workers, a category that includes nursing assistants, home health aides, and personal care aides, provide vital assistance to people with disabilities and older adults at very low pay, making them among the most precarious workers in the United States. Furthermore, these job classifications are among the fastest growing occupations in the country (U.S. Bureau of Labor Statistics, 2025).
Many direct care providers work off the books or move back and forth between formal and informal employment. Such arrangements add to these workers’ precarity, as they earn less and are not covered by workplace protections. Informal labor market work is expected to impact direct care workers’ retirement savings and future earnings, as, by definition, neither they nor their employers are paying into Social Security. However, we are aware of no existing studies that assess direct care workers’ employment trajectories and retirement outlook.
The Short-Lived Research Project
Our research proposal was motivated by evidence that direct care workforce shortages (Eisner, 2023) impede home care availability, which is critical to the health and well-being of people with disabilities and older adults, as well as their ability to keep living in their own homes. (Funding for this proposal by the Social Security Administration lasted only five months as it ended when funding for all New York Retirement and Disability Research Center projects was terminated by DOGE in February 2025.)
First, we had questions about how off-the-books work might contribute to this shortage both directly and by diluting policy solutions. Secondly, we had questions about the role that off-the-books work might play in explaining observed low Social Security benefits for women, particularly for women of color, who make up most of the direct care workforce (it is 87% women and 61% people of color; Campbell et al., 2021). Thirdly, we were concerned that off-the-books work worsened exploitation, ranging from wage theft to sexual and other harassment, which is already a risk given the isolated nature and lack of federal employment protections in the home care/direct health care sector.
For these reasons, we sought to understand direct care workers’ employment trajectories over the life course, focusing on describing their work arrangements and explaining their decision-making about working on and off the books. To analyze employment trajectories, we planned to draw upon both nationally representative secondary data sources and qualitative interviews.
We began with a scoping review to identify appropriate datasets. We found that most surveys asked about employment without referencing whether the work was on or off the books, or only collected such data about a “main job,” which did not capture the degree of informal work evident in tax records (Abraham & Houseman, 2019). When Abraham and Houseman (2019) identified informal work, the data did not include enough information to identify direct care workers, nor did it follow work trajectories. Thus, it was difficult to estimate informal direct care work without knowing how reports of employment and hours at work could be categorized.
Data from the Federal Reserve’s Survey of Household Economics and Decisionmaking (SHED) sheds some light on informal work, although the data come from Knowledge Panel, a nationally representative, probability-based online research sample which is compromised by a relatively low response rate. Between 2018 and 2020, they asked respondents to report several kinds of “occasional work” or “side jobs” including childcare for pay and disabled or elder care services. We find that slightly more than 6% of respondents report this kind of work, with more engaging in childcare than in disabled or elder care. Among those who provide such care, more are women, low income, and report not currently being employed. These workers are typically young, with nearly 14% of individuals ages 18–24 reporting this work, and are more likely to be Black, Hispanic, or another racial ethnic group other than white or Asian.
‘We believe a better understanding of the formal and informal sector work choices of direct care workers still matters.’
Although notable, these findings do not answer our questions about work trajectories and how care workers make decisions about which kind of work they engage in. This kind of research is crucial to more accurately estimate the amount of paid care work being done, the size of the direct care workforce, and to identify the vulnerabilities of this workforce. Our planned next step was to conduct qualitative interviews with care workers in the New York City area to gain a better understanding of their choices and work trajectories. However, as the political and policy context has changed, we were unable to conduct these interviews.
Several factors in addition to loss of funding caused us to stop work at this point. First, our recruitment partners, the union representing some home health workers and a coalition of providers and home care recipients, became completely focused on the threats to Medicaid, the main funder of home and other long-term care services.
Second, the aggressive prosecution of immigrants, including revoking legal status for entire groups (for example, Temporary Protected Status for Haitians and others), roundups, detention, and deportation, has caused immense fear in immigrant communities, including a fear of leaving the house, even to go to work. Given the largely immigrant composition of the direct care workforce, it was implausible that people would volunteer to discuss off-the-books work. Finally, in the current climate, the research team considered it unwise to ask immigrants to come forward for interviews or for anyone to risk discussing informal sector work, even under the protection of our Institutional Review Board’s confidentiality agreement.
Why have we published this research note without our findings? We continue to believe the findings from our proposed study would inform several aspects of direct care workforce policy. First, we do not know how well our existing data accurately describes direct care workers, so we cannot accurately predict or address workforce shortages. Second, we are missing crucial information to understand the extent to which direct care workers will be ready for retirement. Social Security eligibility requires working 40 quarters on the books, where the employer and employee are paying into Social Security. The amount of retirement income paid depends on average lifetime earnings over 35 years. Off the books work does not count toward Social Security eligibility, so some direct care workers may not be eligible for any Social Security upon retirement. People who work both on and off the books are credited with lower lifetime earnings, lowering the amount of their retirement payment. Might this lack of preparation for retirement contribute to the high age of these workers (Hudson, 2017), despite the physically demanding work? And might these payment dynamics contribute to the lower retirement incomes of women? Third, movement between formal and informal sectors undermines the effectiveness of policy initiatives to improve pay and job quality for this critical workforce.
We believe a better understanding of the formal and informal sector work choices of direct care workers still matters. We hope our questions will motivate collaborations with researchers led by direct care workers that describe the conditions of their work and their lives; the trade-offs between formal and informal work; and the ways people make decisions between them. The current and imminent policy environments will place even more stress on the direct care workforce: cuts to Medicaid will lead to downward pressure on wages and hours; crackdown and deterrence of immigration will further shrink an inadequate work force; decrease in trust in government and belief in the future solvency of Social Security may discourage work on the books. It is crucial that we not allow direct care workers to disappear from our consciousness; we have a responsibility to help them bring their experiences and decisions into our policy-making.
Ruth Finkelstein, ScD, is the executive director of the Brookdale Center for Healthy Aging at Hunter College. Jessica Halliday Hardie, PhD, is a professor in the Department of Sociology at Hunter College and the Graduate Center. Cicely Johnson, PhD, is a senior researcher and professor at the Brookdale Center for Healthy Aging at Hunter College.
Photo credit: Shutterstock/Amnaj Khetsamtip
References
Abraham, K. G., & Houseman, S. N. (2019). Making ends meet: The role of informal work in supplementing Americans’ income. RSF: The Russell Sage Foundation Journal of the Social Sciences 5(5), 110–131. https://doi.org/10.7758/RSF.2019.5.5.06.
Campbell, S., Del Rio Drake, A., Espinoza, R., & Scales, K. (2021). Caring for the future: The power and potential of America’s direct care workforce. PHI. http://phinational.org/caringforthefuture
Eisner, E. (2023). Workforce report: Labor shortage mitigation in New York’s home care sector. Fiscal Policy Institute. https://fiscalpolicy.org/workforce-report-labor-shortage-mitigation-in-new-yorks-home-care-sector
Hudson, R. B. (2017). The need for and the needs of the direct care workforce. Public Policy & Aging Report 27(3), 81–83. https://doi.org/10.1093/ppar/prx019.
Rachamallu, K. (2025, April 23). Immigrants contribute greatly to the Social Security trust fund’s solvency. Center on Budget and Policy Priorities. https://www.cbpp.org/blog/immigrants-contribute-greatly-to-the-social-security-trust-funds-solvency
U.S. Bureau of Labor Statistics. (June 13, 2025). Occupational Outlook Handbook. Office of Employment and Unemployment Statistics. https://www.bls.giv/ooh
