The Price of Caring: When Unpaid Caregiving Becomes a Human Rights Issue

Author: Zeinab Abulhul, PhD

June 9, 2026

[Image source: De an Sun at Unsplash]

Introduction: A Question of Rights, Not Charity 

In the United States (U.S.) and across high-income countries, defined by the World Bank as nations with a gross national income per capita of $13,935 or more, the responsibility of caring for children and relatives with disabilities falls primarily on family members, the vast majority of whom are women. This consistent pattern stems from deeply rooted cultural norms and traditional gender roles that continue to assign primary caregiving duties to women (ILO,2022; A/HRC/58/43, 2025).

As of 2025, approximately 63 million Americans—nearly one in four adults—serve as family caregivers, reflecting a 45% increase over the past decade (AARP & National Alliance for Caregiving, 2025). Of these, nearly 59 million provide care for adults with severe medical needs and chronic disabilities (AARP Public Policy Institute, Valuing the Invaluable 2026). This unpaid labor forms the foundation of the long-term care system, yet it remains largely invisible and socially normalized (AARP & National Alliance for Caregiving, 2025; A/HRC/58/43, 2025).

In 2024 alone, family caregivers in the U.S. provided an estimated 49.5 billion hours of care. The economic value of this unpaid labor is calculated by estimating the cost of paying professional care workers for the same number of hours. Using this method, the contribution reached approximately $1.01 trillion in 2024, equivalent to about 3.6% of the U.S. Gross Domestic Product (GDP) (AARP Public Policy Institute, Valuing the Invaluable 2026). This enormous contribution exceeds both Medicaid spending ($932 billion) and private-sector health care costs ($967 billion) (AARP Public Policy Institute, Valuing the Invaluable 2026). 

[Image Source: Economic Value of Family Caregiving and Spending on Select Health and LTSS Categories, in Billion]

Despite this immense contribution to the national economy, caregivers frequently face severe personal repercussions. Approximately 23% have gone into debt as a direct result of caregiving, and 20% report difficulty meeting basic needs such as food, housing, and utilities (AARP & National Alliance for Caregiving, 2025). These financial pressures often stem from high out-of-pocket medical and therapy costs not fully covered by insurance, lost wages from reduced working hours, transportation expenses, and home modifications. 

The financial hardship faced by so many Americans who provide essential, uncompensated medical care to a loved one is not a result of individual choice but of deliberate policy frameworks that treat caregiving as a private family obligation rather than a public good (Beach & Hardy et al., 2022). 

In the U.S., unpaid caregiving receives very limited formal recognition or protection under federal law. There is no national paid family leave policy, no comprehensive federal protections against caregiver discrimination in employment, and unpaid carework is largely excluded from Social Security and retirement benefit calculations (U.S. Department of Labor, 2026; Social Security Administration, 2025). 

Under international law, when systemic structures governing caregiving responsibilities result in social exclusion and economic deprivation, they constitute structural violations of human rights. This situation reflects a broader paradigm shift: moving from viewing the provision of care as “charity” to recognizing adequate support and compensation for it as a “right,” a position explicitly supported by the United Nations High Commissioner for Human Rights in a recent report concerning the human rights dimension of care (OHCHR, A/HRC/58/43/,30 January 2025).  

Economic Disadvantage as a Human Rights Violation

The financial penalty for informal or unpaid caregiving is severe, particularly for parents, especially mothers of children with intensive needs. U.S.-based research consistently shows that mothers of children with Autism Spectrum Disorder (ASD) earn, on average, 35% less than mothers of children with other health limitations and 56% less than mothers of children without disabilities (Cidav & Marcus et al., 2012; Kosherbayeva & Kozhageldiyeva et al, 2025). More recently, U.S. studies confirm that these earnings gaps persist for many years, with mothers of children with developmental disabilities experiencing significant reductions in employment hours and lifetime earnings (Lynch et al 23). Households raising children with autism or other developmental disabilities are also significantly more likely to experience financial hardship and are 26% more likely to be classified as low-income compared to their peers (Collins & Al- Jaishi et al, 2025).

Beyond lost wages due to the reduced working hours or leaving the workforce to meet caregiving responsibilities, families face substantial direct economic burdens. Out-of-pocket expenses are often high because the U.S. healthcare system is highly fragmented, with services split across federal, state, and private providers, resulting in inconsistent coverage and long waiting lists (Burns et al., 2025). For example, families in many states must pay up to $10,000 for comprehensive autism diagnostic assessments when public services are limited or delayed (Frontiers in Public Health, 2025).  

A 2025 study on families of children with complex developmental conditions, such as  Angelman Syndrome, a rare genetic disorder that causes severe developmental delays, intellectual disability, minimal speech, seizures, and the need for lifelong intensive care, found that the average annual household income loss due to caregiving reached $31,809 (Walkowiak, 2025). This loss primarily results from caregiving, reducing their working hours or leaving employment to provide constant support. 

These figures demonstrate that the “care penalty,” a term used to describe the economic disadvantages (lost wages, career setbacks, and increased expenses) that caregivers, particularly mothers, face as a direct result of unpaid caregiving responsibilities (Fobre,2017). 

This is not merely a budgetary inconvenience but a systemic driver of poverty. When caregivers reduce their working hours or leave the workforce, their income drops sharply. At the same time, they continue to face high ongoing out-of-pocket costs for therapies, medical equipment, medications, and specialized care (Cidav & Marcus et al., 2012). This combination creates a double financial burden: less money coming in while essential care-related expenses remain high or even increase. Over time, many families deplete their savings, leading to accumulating debt and restricting families’ ability to afford necessities such as rent, nutritious food, and utilities. What begins as a caregiving responsibility gradually turns into long-term economic disadvantage and poverty for many households (Cidav & Marcus et al., 2012; Saunders et al, 2015).

By systematically producing these outcomes, current caregiving policies actively undermine the human rights to an adequate standard of living, as protected under Article 11 of the International Covenant on Economic, Social and Cultural Rights (ICESCR) and Article 28 of the Convention on the Rights of Persons with Disabilities (CRPD) (OHCHR, A/HRC/58/43/,30 January 2025).

Legal Framework Violations

The current lack of meaningful legal and policy protections for family caregivers in the U.S. violates several core instruments of international human rights law.

The Right to Work

The Universal Declaration of Human Rights (UDHR Art. 23), which includes the right to just and favorable conditions of work, is undermined when the absence of adequate state support forces caregivers, predominantly women, to leave the workforce entirely or accept low-paying “flexible” jobs that offer little security or benefits. The United Nations High Commissioner for Human Rights has noted that excessive unpaid care responsibilities deplete women’s time and resources necessary for decent employment (OHCHR, 2025).

Gender Inequality: Caregiving As Systemic Discrimination 

Caregiving remains deeply gendered beyond the U.S., disproportionately impacting women on a global scale. Worldwide, women and girls perform more than three-quarters of unpaid care work, totaling an estimated 16 billion hours per day (UN WOMEN, 2025). In the domestic sphere, women spend 3.2 times as many hours on unpaid care responsibilities as men (ILO, 2025). 

This imbalance is not biological; it is a structural manifestation of gender discrimination. It results from longstanding social norms, cultural expectations, and economic systems that assign primary care responsibilities to women while undervaluing this burden. One caregiver described her experience this way:

“I had to give up a prosperous career and took jobs to work around their schedule. I took a 90% pay cut and lived out of my savings, which has been depleted.” 

Maylia, a working caregiver, was interviewed in the Caregiving in the U.S. 2025 Report by AARP and the National Alliance for Caregiving (Primary Caregiver Testimony caregiving in the US 2025).

In the U.S., the birth of a child with disabilities often leads to a persistent reduction in maternal earnings, estimated at around 12% lower earnings that can last for at least a decade, while the impact on fathers’ labor market outcomes is statistically insignificant (Cheung, T.T. et al., 2025). 

The UN Working Group on Discrimination Against Women and Girls has stated that fragmented and insufficient care policies amount to systemic gender discrimination (UN Special Procedures, 2025). When States fail to provide adequate paid leave and flexible work protection, caregiving supports, they allow structural discrimination to persist, violating the Convention on the Elimination of All Forms of Discrimination against Women (CEDAW).

This pattern reveals that unpaid caregiving is not a private family matter, but a structural form of gender discrimination that systematically undermines women’s economic security and equality. Without bold state action, these violations of women’s rights will persist. 

State Responsibility: The Duty to Protect and Fulfill

Human rights law imposes three core obligations on States (i.e., national governments, not individual U.S. states). These are known as the tripartite obligations: 

• The duty to respect (refrain from interfering with rights), 

• The duty to protect (prevent third parties, such as employers, from violating rights), and

• The duty to fulfill rights (take proactive measures through legislation, funding, and service to ensure people can actually enjoy these rights) (International Human Rights Law,n.d; OHCHR, A/HRC/58/43, 2025).

The U.S. falls short in several areas, particularly in the duty to fulfill. The absence of a national paid family leave policy leaves many caregivers without income protection when they need time off to provide care. Additionally, long waiting lists for medicaid home and community-based services (HCBS), which help people with disabilities receive care at home instead of in institutions, force many families to bear the full burden of caregiving themselves. These are not minor gaps; they represent a significant failure to meet international human rights obligations (Milvillarreal, 2017).

The Office of the United Nations High Commissioner for Human Rights (OHCHR) has emphasized this point in recent reports. In particular, the 2026 report on disability-inclusive infrastructure (A/HRC/61/32) stresses that States must invest in accessible housing, transportation, and community support systems. Without infrastructure, caregiving becomes increasingly isolated, and caregivers' own rights to health, employment, and social participation are severely restricted (OHCHR, A/HRC/61/32/2026). 

These gaps are not unavoidable or purely fiscal; they are the result of policy choices. Successive governments have chosen not to prioritize comprehensive caregiver support, even though stronger systems exist in many other high-income countries. This political decision has direct human rights consequences for millions of families. 

The Way Forward: Policy Recommendations

A human rights-based approach requires States to move beyond symbolic recognition and to use the “maximum available resources” to actively fulfill caregivers’ rights (ICESCR, Article 2). The following reforms are essential not only to alleviate individual hardship but also to transform caregiving from a cause of structural inequality into a supported public good. 

Legal Recognition of Caregivers 

Currently, the U.S. lacks comprehensive federal protections for caregivers. Codifying “family caregiver status” as a protected class in employment discrimination law at the federal and state levels would prohibit retaliation and unfair treatment (A/HRC/58/43,2025). This reform is critical because it would protect millions of workers from job loss or demotion due to caregiving, reduce forced exits from the workforce, and establish caregiving as a legitimate societal contribution rather than a personal sacrifice (A/HRC/58/43, 2025).

Social Protection and Caregiving Credits

Unpaid caregiving remains invisible in most retirement systems, including Social Security in the U.S. Because benefits are primarily based on formal paid employment, years spent providing unpaid care often result in zero or reduced credits, leading to significantly lower retirement income later in life. 

Implementing direct caregiver payments and Social Security “caregiving credits” would recognize unpaid care as real labor that counts toward retirement benefits. Politically, this represents a major shift from treating caregiving as a private family burden to acknowledging it as essential public work that benefits society as a whole. This reform would significantly reduce old-age poverty among long-term caregivers, especially women, who are disproportionately affected (A/HRC/58/43, 2025; U.S. Senator Chris Murphy, 2026). 

Paid Leave and Workplace Reform: 

The U.S. remains one of the few wealthy countries without universal paid family leave. Mandating paid family leave and flexible scheduling as enforceable rights would shift the burden from individual caregivers to employers and the State.  This would allow caregivers to remain in the workforce, maintain their income and career trajectories, and improve overall family well-being (U.S. Senate, 119th CONGRESS, 2025).

Expansion of HCBS Services: 

Long waiting lists for home- and community-based services (HCBS) force many families to provide full-time care themselves. Eliminating waiting lists and expanding respite care and community-based support services (HCBS) would fulfill obligations under the Convention on the Rights of Persons with Disabilities (CRPD), particularly Article 19 on the right to independent living. This would reduce caregiver burnout, enable more people with disabilities to live in their communities, and lessen the overall economic strain on families. 

Investment in Inclusive Infrastructure 

Aligning with OHCHR standards in A/HRC/61/32 (2026), investing in disability-inclusive transportation, housing, and public spaces would reduce the burden on caregivers. This investment would promote greater autonomy for persons with disabilities and help build more inclusive societies. 

These recommendations are grounded in existing international human rights obligations. Implementing them would mark a significant political shift: from a system that exploits unpaid caregivers to one that values and supports care as a cornerstone of social and economic justice.

Conclusion 

When the U.S. relies on the unpaid labor of millions of family caregivers, predominantly women, while allowing such labor to cause economic hardship, lost opportunities, and social exclusion, it violates the fundamental principles of dignity, equality, and justice.

The legal frameworks to address this injustice already exist in international human rights law, particularly the ICESCR, CRPD, and CEDAW. 

What is missing is not the law, but the political will to apply these standards domestically. Recognizing caregivers’ rights as human rights is both a legal obligation and a moral imperative.  The U.S. must move from viewing caregiving as a private sacrifice to treating it as a supported public good through comprehensive policy reform. The need for structural reform has been delayed for too long. Its implementation is crucial for maintaining family stability, economic strength, and America’s commitment to human rights.

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Glossary

• Care penalty: A reduction in wages, benefits, and career advancement opportunities experienced by individuals who take time off to care for family members.

• Human rights-based approach: A conceptual framework directed towards promoting and protecting human rights based on the international human rights standards

• Medicaid: A jointly funded, federal-state health insurance program for low-income and needy people in the U.S. It covers children, the aged, the blind, the disabled, and other people eligible to receive federally assisted income maintenance payments.

• Right to work: Part of the Universal Declaration of Human Rights, stating that everyone has the right to work, to free choice of employment, to just and favorable conditions of work and to protection against unemployment

• Structural Violence: A form of violence in which some social structure or social institution that may harm people by preventing them from meeting their basic needs or rights

• Structural discrimination: A type of institutional bias that targets individuals with protected characteristics like race, gender, or caste, limiting their opportunities. It can be deliberate or accidental and may be embedded in policies of public or private institutions.

• Tripartite Obligations: The three distinct levels of responsibility placed upon states regarding the fulfillment of economic, social, and cultural rights, particularly the right to food

• Unpaid Caregiving: A person doing a caregiving activity without receiving a wage for it