TABLE 3-1 Federal and State Policies Discussed by Panelists

with the goal to help women and all people lead the lives they want to lead. Since its inception more than 50 years ago, it has focused on care-related issues because women are disproportionately caregivers (family members and others who provide unpaid care) and care workers (health workers and others paid for their labor), particularly women of color. Women have been expected to do this work, and the work has been devalued for centuries, she stated. It is essential to support caregivers and care workers as one key to women’s progress. Sharing her own lived experience as a family caregiver who had access to paid leave, Ms. Frye commented on the importance of that support to fulfill her caregiving responsibilities: “If I had not worked for the National Partnership or a White House where people cared about paid leave, I would not have been able to give my parents the care that they needed.”

Ms. Lee explained that the Center for WorkLife Law at the University of California, San Francisco, seeks to advance gender, racial, and class equity through a focus on the needs of family caregivers at work and in education. The center develops and implements evidence-based interventions in schools and workplaces and works to change policy at the state and national levels. They have compiled a database of legal cases dealing with family responsibilities discrimination. Research is used to make the case for stronger protections and to inform institutional changemakers, policymakers, and attorneys. The center also provides direct assistance to organizations; conducts bias interrupter training; and operates a free legal help line for workers and students.

Ms. Lee also discussed her role as director of the Pregnant Scholar Initiative in which she focuses on workers and students who are welcoming new children in their homes. Recent research in which she was involved, published in the American Journal of Cardiology, found a correlation between employment practices and pregnancy complications among women cardiologists (Gulati et al., 2022). She was also involved in a study that found that only 14 percent of the top 50 medical schools have policies for parental leave (see Chapter 2). Mothers are only half as likely to be in science, technology, engineering, and mathematics programs as in non-STEM programs, which she noted has implications for those who feel pushed out and for the workforce and country at large. Ms. Lee pointed to

some successes in 2022, including the PUMP for Nursing Mothers Act and the Pregnant Workers Fairness Act.¹

Dr. Reinhard introduced herself as the second of six children, with many caregiving responsibilities over the years, including for family members with mental health challenges, and as a nurse who spent many years in clinical practice. She now leads the AARP Public Policy Institute, which conducts research on family caregiving and other topics. In her own observations and in research, Dr. Reinhard said she has seen the amount of unpaid care that is expected of family members. She and colleagues developed a Burden Assessment Scale as a tool that is simple and quick, and has been translated and used around the world to assess caregiver burden (Reinhard et al., 1994).² She stressed the need for action, and to blend clinical practice with policy and research to reach more people. She called attention to the AARP Long-Term Services and Support (LTSS) Scorecard, including a 2023 release on “valuing the invaluable” that spotlights the economic contribution of family caregivers.³

DIFFERENT LAWS ACROSS THE COUNTRY

Mr. Resendez observed that the laws covering discrimination against caregivers vary across the nation. Dr. Reinhard commented that while she wished there was more federal legislation, the reality is that most caregiving-related actions occur at the state level, making it necessary to review what is happening in each state to identify promising practices and policies. She noted that this patchwork of laws made it a challenge to make progress from state to state and identify promising practices in policy. The LTSS Scorecard has included state-level laws related to discrimination for several years, noting as well that some local jurisdictions have passed such laws. She acknowledged the need to learn more about how this happened at the local level, who was championing it, and how it was able to pass. She also noted

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¹ Both these acts were passed by the 117th Congress in 2022. The PUMP for Nursing Mothers Act (S. 1658) was signed into law by President Biden on December 29, 2022, as part of the Consolidated Appropriations Act, 2023 (P.L. 117-328). It extends to more nursing employees the rights to receive break time and a private place to pump at work. The Pregnant Workers Fairness Act (H.R. 1065) requires employers with at least 15 employees to provide “reasonable accommodations” to a worker’s known limitations related to pregnancy, childbirth, or related medical conditions.

² Dr. Reinhard noted that “burden” is not currently used terminology to reflect caregiving responsibilities but was commonly used in the 1990s when she developed the scale.

³ See https://www.aarp.org/ppi/info-2015/valuing-the-invaluable-2015-update.html.

that unemployment insurance contains a little-known clause that covers caregiving. In her observations, an increasing number of policymakers are experiencing caregiving challenges, which helps them understand the problems but still need to find solutions, especially when money is involved.

Ms. Lee concurred that it is a “slog” getting these laws passed state by state, but she has seen progress. Five states—Alaska, Delaware, Minnesota, New York, and Maine—have some protection against family responsibilities discrimination, but the definitions vary from state to state. In particular, she noted that New York defines family status as being a parent of children, which excludes a huge group of workers who need protections are caregivers for other individuals. Two hundred localities also have some protection against family caregiving discrimination, but many focus on parents. The latest estimate is that 30 to 40 percent of the workforce is covered through different policies and laws; those who are left out try to find other legal recourse, such as the Americans with Disabilities Act of 1990 (P.L. 101-336) or Title VII of the Civil Rights Act of 1964 (P.L. 88-352). However, she noted, most workers do not have access to a lawyer who can help them find these routes. She urged federal legislation to make protections clearer and not have to engage in legal gymnastics to get caregivers the protections they need. Ms. Frye posited that the legal framework is complicated because perceptions of care are rooted in gender and gender roles. Society devalues care work, especially by women of color, and it must be elevated as worthy to protect, she said. National laws will help, but she stressed the need to look at cultural and not just legal challenges.

The Family and Medical Leave Act (FMLA; P.L. 103-3) is marking its 30th anniversary in 2023,⁴ and Ms. Frye called for modernization of eligibility. It omits 40 percent of the working population because the employer is not covered, the employee has not worked for the employer long enough, or for other reasons. Workers of color are disproportionately not covered. Dr. Reinhard noted 11 states and the District of Columbia have legislated paid family leave, but the protections and implementation vary especially at the state level. In addition, she pointed out, only 14 states mandate paid sick leave, with differences across states about whether this leave can be used for caregiving of family members who are sick. To Dr. Reinhard, taking full advantage of existing policies is the “lowest-hanging fruit.” Ms. Lee underscored the need for laws to prevent discrimination against caregivers. “I see antidiscrimination law as hand in hand with sick and paid family leave,”

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⁴ For information about the FMLA, see https://www.dol.gov/agencies/whd/fmla.

she stressed, noting that she has seen cases where employees are penalized or retaliated against under the assumption they will need accommodations. Sometimes employees do not feel safe asking for leave. While FMLA has protections against retaliations and interference, the act does not cover all workers, nor does it protect against other forms of bias.

EXEMPLARS OF PROMISING PRACTICES

Mr. Resendez agreed on the need for discrimination protection dispelling of stigma, and building a culture that supports caregiving. He asked the panelists about any exemplars at the state level. Ms. Lee pointed to policies in Delaware, California, and Minnesota, as well as in New York, although the law in that state only covers caregiving for children. In Delaware, she noted, there is a law against caregiver discrimination and providing paid family leave, though she noted the details of this law had some shortcomings in her opinion. She also discussed expanding access to paid family leave in California and the provision of emergency sick leave as a result of the pandemic and a recently passed bill on bereavement leave. The California legislature was also currently considering legislation to ban family responsibilities discrimination, which Ms. Lee noted she was watching closely. Ms. Frye noted that Washington State has introduced progressive wage replacement as part of its implementation of the Build Back Better Act (P.L. 117-169), in which people with the lowest incomes can take leave and still receive some of the wages they must forego.

Ms. Frye reinforced that FMLA is at its heart an antidiscrimination measure to remedy sex discrimination under the assumption that women are the primary caregivers. Building from Dr. Mangurian’s presentation on caregiving as an aspect of gender equity (see Chapter 2), Mr. Resendez asked about the core elements to achieve equity. Dr. Reinhard suggested using a caregivers’ assessment to understand individuals’ needs. She commented that when she co-conducted a literature search on what is known about family caregiving across cultures, she found research in the 1980s and 1990s within a stress paradigm, followed by many years with almost no research. The research is starting again, but also improving, she said, with oversampling as a critical way to understand the needs of diverse caregivers in terms of populations, cultures, the conditions of the people for whom they are caring, and other variables. This knowledge can lead to better policies and interventions, Dr. Reinhard said.

legislation support women in the workforce, and part of achieving this is to ensure that supports are in place for women to take these jobs. She also noted the CHIPS Act includes a provision that principal investigators who are caregivers are not penalized in accessing research grants. It provides greater flexibility to adjust the timeline of a grant, which she said is one piece of the puzzle for greater diversity by not derailing people with caregiving demands.

Dr. Reinhard also pointed out that through the Caregiver Advise, Record, Enable (CARE) Act passed in 46 states and the District of Columbia, patients discharged from the hospital can identify a person who will help them, and that person is included in the patient’s medical record and receives training. AARP is following implementation of the act across states.⁵ She suggested this requirement be included under Centers for Medicare and Medicaid regulations or Joint Commission standards.⁶

As discussed throughout the workshop, some policies face unexpected challenges or lead to unintended consequences in implementation, Mr. Resendez said, and he asked discussants for their thoughts on the kinds of unintended consequences that have occurred with current policies. Pointing to lessons learned from the FMLA and from states with paid family medical leave, Ms. Frye underscored that “policy is the first piece. It is all about implementation and how it is integrated in the workplace to intentionally promote a culture that supports the law. If the culture does not support caregiving, even with a policy in place, the incentive is not to have people who are caregivers. Implementation matters.” She also said a robust infrastructure is essential for policy to work effectively. For example, the technical infrastructure must be in place to deliver benefits to people weekly or biweekly when they are on leave. Also, all leave policies are not the same, she said. Some organizations have policies only for high-level workers, or even instances where leave is available to all employees, only women take leave and men are discouraged from doing so. The fact that policies are on paper is not the same as using them, Ms. Frye stated.

Ms. Lee also suggested not waiting for laws to change. “If you have political capital at your institution to push for family caregiving policies, please use it,” she urged participants. Only a handful of states prohibit family responsibilities discrimination, but the need is growing: The population

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⁵ For more information, see https://www.aarp.org/politics-society/advocacy/caregiving-advocacy/info-2014/aarp-creates-model-state-bill.html.

⁶ For more on Joint Commission standards, see https://www.jointcommission.org/standards/about-our-standards/.

is aging, the number of workers with disabilities has grown almost 19 percent, and the U.S. Supreme Court’s Dobbs v. Jackson Women’s Health Organization decision on access to abortions will have consequences.⁷ “At some point, our system is going to break again,” Ms. Lee said. “We are going to continue suffering from a STEMM workforce and education pipeline that cuts out women, people of color, and family caregivers.”

DISCUSSION

Opening the public discussion, committee member J. Nicholas Dionne-Odom, Ph.D., R.N. (University of Alabama at Birmingham) asked about leveraging federal policies to effect changes within institutions. Ms. Frye said, “My message to anyone at an institution or organization is ‘this is coming.’ Paid leave will be here, not if but when, and hopefully sooner rather than later. It is better to be on top of the issue now and to do it effectively.”

In answer to a question from committee member Sandra Masur, Ph.D. (Icahn School of Medicine at Mount Sinai) about data resources for the committee and the public to learn more on existing policies across states, Dr. Reinhard suggested the LTSS Scorecard, which was last compiled in September 2020 and will be updated for release in September 2023. In fall of 2022, WorkLife Law created a table of state and discrimination laws.⁸ The National Partnership for Women and Families also collects and shares information, including a website set up for the 30th anniversary of FMLA.⁹

Committee member Jeff Gillis-Davis, Ph.D. (Washington University in St. Louis) expressed concerns about what courts may decide on caregiving, noting the Supreme Court’s decision on Dobbs v. Jackson and the court’s upcoming case on affirmative action. Ms. Frye said the history of the Supreme Court on caregiving related to FMLA is uneven, but she expressed hope in this area, referring to the Hibbs decision (Nevada Department of

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⁷ See Dobbs, State Health Officer of the Mississippi Department of Health, et al. v. Jackson Women’s Health Organization et al. (2022) at https://www.supremecourt.gov/opinions/21pdf/19-1392_6j37.pdf.

⁸ WorkLife Law, State and Local FRD [family responsibilities discrimination] Laws Prohibiting Employment Discrimination against Parents and Other Caregivers, https://worklifelaw.org/wp-content/uploads/2021/10/State-and-Local-FRD-Law-Table.pdf.

⁹ This website no longer appears to be available online as of May 2023. An archived view of the website can be found at http://web.archive.org/web/20230410154716/https://www.nationalpartnership.org/our-impact/news-room/news-coverage/long-live-leave-celebrating.html.

Human Resources v. Hibbs) and Coleman decision (Coleman v. Court of Appeals of Maryland).¹⁰ In particular, she explained the Hibbs decision was the first time the Supreme Court tackled the FMLA and its antidiscrimination protections. It reflected the reality that the issue of care is not a partisan issue because it touches so many people. In addition, she said, most cases are litigated at the local level, where changes will take place. She also noted that the pandemic has changed workers’ expectations, and caregiving is a universal need.

Ms. Lee expressed hope, as seen in the PUMP for Nursing Mothers Act and Pregnant Workers Fairness Act that passed with support from both parties. Committee member Robert Phillips, Jr., M.D. (American Board of Family Medicine) noted a primary concern of railroad employees in a possible strike in late 2022 was with paid sick leave and asked about the role of unions in advancing policies, noting that STEMM labor usually organizes in different ways. Ms. Frye said the National Partnership supported the rail workers’ demand for paid sick leave, but acknowledged the strike was a unique scenario because of its potential impact on the economy. However, because there was so much effort by rail workers in a traditionally male field to push for sick leave sent a message that this is a work and labor standards issue, and essential to the workplace. “The power of the union to drive this issue was an important marker,” Ms. Frye asserted. “And it is a reminder to us all that these issues cut across race, gender, and class.” Ms. Lee noted that some STEM unions exist or are forming, and many in the new generation of STEMM are organizing with colleagues.

Mr. Resendez reminded the group of the data about who has access to existing leave policies with higher education (see Chapter 2), with faculty having the highest access. Graduate and medical students are starting to organize. Paid leave is inevitable, but it is important to see how comprehensive paid leave will be implemented and how attention is weighted to parental care. There is an opportunity to think expansively about who caregivers are, their needs, and the tools available to build pressure for comprehensive policies, including unions, he commented. An audience member commented that the variance in policies by position (faculty, residents, staff) represent a “ladder of leave privilege.” Ms. Frye said the dynamic occurs outside of the academic workforce in which benefits for those at the

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¹⁰ See Nevada Department of Human Resources, et al. v. William Hibbs, et al., 538 U.S. 721 (2003) at https://www.supremecourt.gov/oral_arguments/argument_transcripts/2002/01-1368.pdf and Daniel Coleman v. Court of Appeals of Maryland, et al., 132 U.S. 1327 (2012) at https://www.law.cornell.edu/supremecourt/text/10-1016.

corporate level do not extend to frontline workers. “This is an equity issue. This is a matter of discrimination. If you reinforce leave privilege, then you are reinforcing inequity that probably tracks other problems,” she said. As a practical matter, the data reinforce that a larger percentage of high-wage employees have access to paid family leave than do low-wage employees. Federal protections can avoid this disparity. She said her message to employers is that extending policies is about promoting equity, not handing out benefits to retain employees who are most likely to be hired elsewhere. Dr. Reinhard asserted the need to consider sick leave. Forty percent of workers have no sick leave, and most are lower-income workers. Ms. Frye noted from a business perspective, businesses are more productive and remain more intact when they have supports for workers to step out to care for family and come back to the workplace.

Regarding federal legislation, Ms. Lee said paid leave was available during the Families First Coronavirus Response Act (P.L. 116-127), which saved lives and livelihoods, and was very popular as a stopgap measure. Although movement for paid family and sick leave is strong on all sides, she did not think passage of permanent legislation would occur soon. Dr. Reinhard also pointed to pandemic-related public health waivers and flexibilities, as well as respite care in some states. States have 6 months after the end of the declared public health emergency to decide if they want to continue these policies. To Ms. Frye, a lesson learned is that these benefits occurred amid a devastating emergency. “Pandemic amnesia” is setting in, but it is important to remind people about what happened and that the need still exists. Mr. Resendez urged becoming fierce advocates for comprehensive leave for all caregivers.

In response to an audience member question about building a strong base of support for changes to policies for caregivers, Dr. Reinhard observed that younger caregivers are more ready to act through social media and other ways. Ms. Lee agreed that younger people take flexibility as a core workforce benefit. It is important to work across generations and for all caregivers, and not segment the movement, she said. Ms. Frye said that care cuts across every community and constituency. It disproportionately affects women, but it affects everyone. The economic case is compelling, as Secretary of the Treasury Yellin and business leaders have stated. It also concerns the health and well-being of families. “When we make that case collectively, we build support and momentum,” she concluded.

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