Written Testimony of Lynn Feinberg, MSW Senior Strategic Policy Advisor Independent Living/Long-Term Care AARP Public Policy Institute

Meeting of February 15, 2012 - Unlawful Discrimination Against Pregnant Workers and Workers with Caregiving Responsibilities

Chairwoman Berrien and Commissioners, thank you for inviting AARP to participate in today's meeting on "Unlawful Discrimination against Pregnant Workers and Workers with Caregiving Responsibilities." I am Lynn Feinberg, Senior Strategic Policy Advisor in AARP's Public Policy Institute. AARP is a nonprofit, nonpartisan organization with a membership that helps people 50+ have independence, choice, control, and quality of life in ways that are beneficial and affordable to them and society as a whole. Equal opportunity in the workplace, and the ability of workers to balance work and family responsibilities, is central to that quality of life.

I am honored to be with you today to provide a profile of the realities facing family caregivers of aging relatives or friends, especially the experience of workers with eldercare responsibilities. Caregiving for an aging relative – once one of the most personal and private matters in family life – is a growing public issue. It is also an intensely personal issue affecting an increasing number of real people in our country in all walks of life.

The "New Normal" of Family Caregiving

For America's families, the challenges and pressures of family caregiving for an older adult are a growing reality. To illustrate, I'd like to share with you Alice's story.

Alice is divorced, 53-years-old, an only child, and caring at home for her 86 year-old father who has multiple chronic conditions. She has two children she still supports, though they are attending college in other states. She also has a full-time job at a technology company in Virginia. She can only afford to hire a home health aide for her father three mornings a week, despite his needs for additional care and support. Alice goes to her job at 7 am each morning, but she takes the worries about her father with her. As her father's health declines, her responsibilities increase. Every day at 3pm she has to drive home to give her father an injection, and then go back to work. On two of those days she has to leave her job at lunchtime to bring her father to a dialysis center. On these days, she returns to work and stays late to make up the time. Once she gets home, her evenings are spent caring for her father — making dinner and helping him eat, administering medications, bathing and washing him, and getting him ready for bed. Her father is agitated, forgetful, and gets up often at night, and frequently needs help going to the bathroom. Alice can't sleep. These are just the normal days.

Increasingly, and especially after her father's recent hospitalization, Alice is consumed with assisting her father in carrying out daily activities (such as bathing, dressing), coordinating his care from multiple health care and social service providers, providing or arranging transportation to doctor's visits and community services, handling insurance claims and bills, managing multiple medications, giving injections, and doing other health-related tasks, and much more. Oftentimes she has to arrange for her father's care during the day, while she is on the job, and this disrupts her work day and causes extra stress. On the days that her father has doctors' appointments, Alice takes the day off to go with her father so that she can communicate with the health professionals and ensure that her father is getting good care. She recently was offered a job promotion, but had to turn it down because of her caregiving activities, and that made her depressed. She needs the additional income to make ends meet and to pay for her father's additional care needs, but she couldn't take on more job responsibilities that involved travel. Alice is overwhelmed juggling her full-time job, caring for her father, and being there for her kids. She has no social life and has lost touch with her friends. She has begun to experience severe back pain from transferring her father from bed to chair, and getting him into and out of the car. Her blood pressure has gone way up. She knows she can't continue doing it all, but she loves her father and wants to give back to him as he gave to her as a child. She also needs a steady pay check, and wants to save for her own retirement. Holding down a job while providing eldercare can be a challenging balancing act, a financial hardship, an emotional rollercoaster, and a health risk too.

Alice isn't alone.

She is one of about 62.1 million family caregivers in the United States providing an estimated 40.3 billion hours of care to an adult with limitations in daily activities (such as bathing, dressing or eating) during 2009. According to AARP's Public Policy Institute, the estimated economic value of their unpaid contributions was approximately $450 billion in 2009, up from an estimated $375 billion in 2007. How much is $450 billion? It is as much as the total sales of some of the world's largest companies (e.g., Wal-Mart: $408 billion in 2009) and the three largest publicly held auto companies combined (Toyota, Ford, Daimler: total $439 billion).

The term "family caregiver" is broadly defined and refers to any relative, partner, friend, or neighbor who has a significant personal relationship with and provides a broad range of assistance for an older person or other adult with a chronic or disabling condition. These individuals may live with or separately from the person receiving care and services.

The average family caregiver in the U.S. is a 49-year-old woman who works outside the home and spends nearly 20 hours per week providing unpaid care to her mother for nearly five years. Almost two-thirds of family caregivers are female (65%). More than eight in ten are caring for a relative or friend age 50 or older.

Changing Demographics and Economics: Aging of the Population, Greater Reliance on Family Care, Changes in Family Life, and More Older Workers in the Labor Force

Although caregiving has been, is now, and will continue to be central to American family life, several converging factors make family caregiving an issue of critical national significance today:

Aging of the population. The U.S. is facing an unprecedented shift in the size and proportion of its older population. Last year, in 2011, the oldest of the estimated 78 million baby boomers—Americans born between 1946 and 1964—began to turn 65. Today, over 40 million people, or about one in every eight Americans, are ages 65 and older, but this number is projected to grow to an estimated one in five Americans, or about 72 million, by 2030.

Not only is our population aging rapidly, but people are living longer too. In 1900, the average age of death was 47 years, and people died mostly from acute care conditions. Today, Americans are living well into their eighties and nineties and beyond, often with multiple, complex chronic conditions that require care and supportive services.

Greater reliance on family care. When we think about long-term supportive services, the picture that comes to mind may be of an older person in a nursing home. But the reality is that most long-term care is not institution-based at all. The vast majority of older adults with chronic, disabling conditions live at home and in the community, and they receive family care. Research consistently shows that between 80 to 90 percent of care in the community to older adults is provided by family and friends.

Medical advances, shorter hospital stays, limited discharge planning and expansion of home care technology have transferred the cost and responsibility for the care of frail older adults onto families. Family members are now asked to carry out health care tasks (such as wound care, tube feedings) in the home with little preparation or training. At the state and local level, increased demands and budget cuts for paid home and community-based services to supplement family care are placing more responsibilities and economic burdens on families.

Changes in family life. Changes in family structure, such as delayed marriage and childbirth, high rates of divorce, and smaller family size than in the past, mean that the burden of care fall on fewer people in a family. Women's increased participation in the labor force— growing from 33 percent of the labor force in 1960 to 74 percent in 2009—and more widely dispersed families impact the older adult and the family (Jacobsen, Kent, Lee, and Mather, 2011). With older people less likely now to have family close by than in the past, long-distance caregiving is a mainstay of life for many baby boomers who are in the labor force and care for aging parents.

More older workers in the labor force. Workers ages 55 and older were 19.5 percent of the labor force in 2010 (Bureau of Labor Statistics, 2011). By 2018, it is projected that workers 55+ will comprise nearly one in four (23.9%) people in the labor force—almost all of the growth in the workplace between now and 2018 will be in the 55 and older age group (Toossi, 2009). Nearly half (47%) of AARP's members who are age 50+ are working full or part time.

The Costs of Family Caregiving

A 30-year body of research shows that family members who provide care and support to older persons or adults with chronic or disabling conditions are themselves at risk. Emotional, physical and financial problems arise from the complexities and strains of family caregiving. There are negative effects on the caregivers' own physical and emotional health, financial situation, retirement security, social networks, careers, and ability to keep their loved one at home. The impact is especially great when the care is for a loved one with complex health conditions and both functional and cognitive impairments, such as a person suffering from Alzheimer's disease (Feinberg, Reinhard, Houser, and Choula, 2011).

Recent findings from the American Psychological Association's Stress in America survey show that those who serve as family caregivers to aging relatives report higher levels of stress and poorer health than the population at large. More than half (55 percent) of caregivers surveyed said that they felt overwhelmed by the amount of care their family member needs (American Psychological Association, 2012).

How Eldercare is Different from Childcare

Eldercare responsibilities—especially for adult children caring for a parent or parent-in-law—are different from childcare responsibilities in several fundamental ways. Chronic illness or disability affects not only the individual but the family. When an older person becomes ill, roles, relationships, and expectations within the family change (Mace and Rabins, 2011).

Evidence suggests that more family caregivers with eldercare responsibilities are assisting older family members or friends with higher rates of disability than in the past, and are more likely to be providing hands-on and often physically demanding and intimate personal help with activities such as bathing or using the toilet (Houser, Gibson, and Redfoot, 2010).

Children are generally more predictable than aging parents, and become (hopefully) more self-sufficient as they grow up. Eldercare may arise gradually from chronic, degenerative conditions, such as multiple sclerosis, Parkinson's disease, or Alzheimer's disease. But very often the need for long-term supportive services arises abruptly as the result of an accident or acute health crisis, such as a broken hip or a stroke (Reinhard, Kassner, Houser, and Mollica, 2011). Suddenly, an adult child is thrown into this world of caregiving with little preparation or time to make choices. The unpredictability of eldercare, and the unexpected financial costs of care, often adds to the strain of family caregiving.

In eldercare, an adult child may live at a distance from a parent, creating complicated logistics, additional out-of-pocket expenses, and more worries—especially if the adult child also has a job in addition to caregiving responsibilities.

Also several family members, such as siblings, may be involved in care for an aging parent, which can cause family conflict. Complex emotions play a role in providing care to a parent with serious and advanced illness, especially when family members must make health care decisions in the event of loss of capacity for a parent with dementia. These emotions can arise not only from the sometimes consuming task of providing and coordinating care, but also from facing one's own mortality, and not knowing what care their parent would want.

Profile of the Working Caregiver

Recent Gallup research finds that more than one in six (17%) Americans who work at full- or part-time jobs also provide care and assistance for an older relative or friend, or an adult with disabilities. Over half of working caregivers are women (54%), but 46 percent are men. More than one in five (22%) middle-aged and older workers (ages 45-64) report being caregivers, typically for an aging parent—the highest percentage of any age group (Gallup Inc., 2011).

Working caregivers are socioeconomically diverse. More than one in five (21%) working Americans with an annual income of less than $36,000 report that they are caregivers, compared to sixteen percent of middle-income households (annual income between $36,000 - $89,000), and 15 percent of higher-income households (annual income of $90,000 or higher). Those with less education are somewhat more likely to be working and caregiving: 20% high school or less; 15% college graduate; and 16% post-graduate work or degree (Gallup Inc., 2011).

About 42 percent of U.S. workers have provided care for an aging relative or friend in the past five years. Just under half (49%) of the workforce expects to be providing eldercare in the coming five years (Families and Work Institute, 2010).

Impact of Caregiving on Work

The vast majority (74%) of family caregivers have worked at a paying job at some point during their caregiving experience. More than half (58%) are estimated to be currently employed either full-time or part-time, balancing work with their caregiving role.

The costs of caregiving impact both individual workers and employers. When it becomes stressful to juggle caregiving activities with work and other family responsibilities, or if work requirements come into conflict with caregiving tasks, some employed caregivers make changes in their work life.

According to the Caregiving in the U.S. 2009 survey conducted by the National Alliance for Caregiving and AARP, nearly seven in ten (69%) caregivers report making work accommodations because of caregiving. These adjustments include arriving late/leaving early or taking time off, cutting back on work hours, changing jobs or stopping work entirely. Family caregivers with the most intense level of caregiving (those who provide 21+ hours of care each work), or those who live with their care recipient are especially likely to report having to make workplace accommodations.

Lost wages and retirement. Family caregivers can face financial hardships if they leave the labor force due to caregiving demands. The financial impact on working caregivers can involve multiple aspects of their income security, including their wages, job security and career paths, and employment benefits such as health insurance, Social Security, and retirement savings.

A recent analysis found that the lifetime income-related losses sustained by family caregivers age 50+ who leave the workforce to care for a parent are about $115,900 in wages, $137,980 in Social Security benefits, and conservatively $50,000 in pension benefits. These estimates range from a total of $283,716 for men to $324,044 for women, on average, in lost income and benefits over a caregiver's lifetime (MetLife Mature Market Institute, 2011).

Because women are the major caregivers for aging relatives, and typically work less years then men, the financial impacts on working women who also are caregivers can be particularly troublesome. Research suggests that assuming the role of caregiver for aging parents in midlife has a greater economic impact on female caregivers' retirement years (MetLife Mature Market Institute, 2011). There is also evidence that assuming the caregiving role for aging parents may substantially increase women's risks of living in poverty and receiving public assistance in old age (Wakabayashi and Donato, 2006).

During the continued economic downturn, family caregivers face conflicting pressures and economic consequences. One study found that employed caregivers were either less willing to take time off from work to provide care (50%), or were faced with having to work more hours or get an additional job (33%) to cover caregiving costs. More than four in ten (43%) employed caregivers have had their work hours or pay cut since the economic downturn (Evercare and National Alliance for Caregiving, 2009). An online survey of caregivers found that one-third of employed caregivers said that the recent recession had caused them to quit their job, retire early, reduce work hours, or take a leave of absence (Caring.com, 2011).

Employer Considerations. Caregiving has economic consequences not only for the family caregiver but also for employers: there are costs to accommodating and supporting caregiving, but there are also costs to not accommodating and supporting caregiving.

A recent survey found that working caregivers are forced to miss an average of 6.6 days of work a year because of caregiving responsibilities, and estimated that U.S. businesses lose up to $25 billion annually from full-time caregiving employees due to absenteeism alone (Gallup Inc. 2011). Research also shows a link between working family caregivers of older adults and their health care costs. In one study, employers were found to be paying about eight percent more for the health care of employees with eldercare responsibilities compared to noncaregiving employees, potentially costing U.S. businesses an additional estimated $13.4 billion per year (MetLife Mature Market Institute, National Alliance for Caregiving, and University of Pittsburgh, 2010). Prior estimates suggest that U.S. businesses lose up to $33.6 billion per year in lost productivity from full-time employees, due to a range of factors, including the costs associated with replacing workers, absenteeism, workday distractions, supervisory time, and reductions in hours from full-time to part-time.

However, many studies also document the business case for instituting workplace policies that support and accommodate employees with caregiving responsibilities. As the EEOC's paper on employer best practices notes:

Numerous studies have found that flexible workplace policies enhance employee productivity, reduce absenteeism, reduce costs, and appear to positively affect profits.http://www.eeoc.gov/policy/docs/caregiver-best-practices.html - 7 They also aid recruitment and retention efforts, allowing employers to retain a talented, knowledgeable workforce and save the money and time that would otherwise have been spent recruiting, interviewing, selecting and training new employees. (US EEOC, 2009).

The human resources and cost savings to employers from offering supportive arrangements for working caregivers and other employees can amount to far more than the cost of not doing so. For instance, in one recent research report, just one firm, Deloitte, reported a savings of over $400 million in turnover costs alone in one year from having instituted workplace flexibility policies. (Corporate Voices, 2011).

Given the prolonged economic downturn, it is especially important that family caregivers with eldercare responsibilities — especially older workers age 50+ who are in their peak earning years — stay in the workforce while caring for an older relative. Employers can serve the best interests of their employees by anticipating and responding to the growing challenges of eldercare for their employees with greater flexibility in the workplace and policies that would benefit working caregivers — by making eldercare resources available to working caregivers, more wellness programs and preventative health services, better retirement planning information, flexible workplace arrangements, and supervisors who are sensitive to family caregivers.

Unlawful Discrimination against Workers with Family Responsibilities

In 2007, the EEOC promulgated important and useful guidance on some of the ways in which discriminatory treatment of workers with caregiving responsibilities might violate the civil rights laws that the EEOC is charged with enforcing (US EEOC, 2007). Traditionally, as the EEOC's guidance reflects, FRD has manifested itself primarily as sex discrimination, usually based on stereotypes held by employers that women, and not men, are -- or even should be -- responsible for family caregiving. Women have borne the brunt of these stereotypes, but men, too, have faced adverse treatment or retaliation by employers who believed men should not be caregivers. Differential treatment on the basis of sex is actionable under Title VII whether the worker is younger and caring for children, or older and caring for an aging parent.

The EEOC guidance also addresses the statutory prohibition on associational discrimination under the Americans with Disabilities Act. The ADA itself expressly prohibits "excluding or otherwise denying equal jobs or benefits to a qualified individual because of the known disability of an individual with whom the qualified individual is known to have a relationship or association." Consequently, an employer's refusal to hire a worker who has a disabled spouse due to concerns about higher health care costs, or passing over an older worker for promotion because of awareness of that worker's caregiving responsibilities for an ailing parent, would violate this provision of the ADA.

However, the EEOC guidance is silent as to the implications of FRD as a possible violation of the Age Discrimination in Employment Act. Studies show that caring for an aging relative is a responsibility that disproportionately tends to occur at older ages: the average age of caregivers for those 50+ is age 50 (National Alliance for Caregiving, 2009). Admittedly, not all of these older caregivers are in the workforce, but over 60% said they were presently employed, and three-fourths of family caregivers for older adults report that they were employed for at least some of the time that they were caring for that loved one, so there is likely substantial overlap. As both the workforce and the population ages, the workplace will include even more older employees with caregiving responsibilities for more older relatives and friends.

AARP urges the EEOC to take note of these changing demographics in its guidance and to expand its conception of the protected bases on which FRD may occur to include age. FRD could present as disparate treatment based on age, for instance, if an employee's caregiving responsibilities were used as a pretext for age discrimination in a termination, or if an employer passed over for promotion an older, more qualified employee based on assumptions about that employee's ability to juggle work and caregiving. Or, it could present as disparate impact based on age (or sex), for instance, if an employer imposed unduly harsh penalties for failing to follow rules on getting approvals for absences that did not account for the periodic need to arrive a little late or leave a little early that often accompanies caregiving. If the EEOC is updating its enforcement guidance on FRD, discrimination against older workers should be added.

It is certainly the case that eldercare responsibilities can be overwhelming at times. Sometimes, a worker may need to pare back hours or leave the workforce altogether to manage the load. However, as the research findings above illustrate, most family caregivers for aging relatives or friends handle these duties while continuing to remain employed and doing their jobs. The civil rights laws, properly enforced, should ensure that workers' opportunities are not limited by stereotypes, misperceptions, or unwarranted assumptions about caregiving.  In addition, there needs to be vigorous enforcement of the FMLA and the enactment of additional workplace requirements, such as paid sick days, that will accommodate the needs of working caregivers and enable them to successfully juggle job and family responsibilities, as so many do now. 

Conclusion

As more American families experience the "new normal" of working and being a family caregiver, better public policies, private initiatives and community supports are needed to both help workplaces adapt and to sustain caregiving families. AARP thanks the Commission for acknowledging the concerns of midlife and older workers with eldercare responsibilities. We look forward to working with the Commission to ensure that the growing numbers of working family caregivers have access to "family-friendly" workplace policies and support services, receive equal opportunity in the workplace, and are protected from employment discrimination. I thank you for the opportunity to testify today and I would be happy to answer any questions you may have.

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References

American Psychological Association, Stress in America (Washington, DC: American Psychological Association, January 2012).

Aumann, K., Galinsky, E., Skai, K., Brown, M., and Bond, J.T., The Elder Care Study: Everyday Realities and Wishes for Care (New York, NY: Families and Work Institute, October 2010).

Bureau of Labor Statistics, Employment status of the civilian noninstitutional population by age, sex, and race, Table 3 (2011), https://www.bls.gov/cps/cpsaat03.htm

Caring.com, Usage and Attitude Survey (Caring.com, February 2011).

Corporate Voices, Business Impacts of Flexibility: An Imperative for Expansion (2011), http://cvworkingfamilies.org/flex_report/flex_report.shtml

Doty, P. "The evolving balance of formal and informal, institutional and non-institutional long-term care for older Americans: A thirty-year perspective," Public Policy & Aging Report 20, no. 1 (2010):3-9.

Evercare and National Alliance for Caregiving, The Economic Downturn and Its Impact on Family Caregivers: Report of Findings. (Minnetonka, MN: Evercare, and Bethesda, MD: National Alliance for Caregiving, 2009).

Family Caregiver Alliance, Caregiver Assessment: Principles, Guidelines, and Strategies for Change. Report from a National Consensus Development Conference, Vol. I. (San Francisco, CA: Family Caregiver Alliance, 2006).

Feinberg, L., Reinhard, S.C., Houser, A., and Choula, R., Valuing the Invaluable: 2011 Update, The Growing Contributions and Costs of Family Caregiving, AARP Public Policy Institute, Insight on the Issues 51 (Washington, DC: AARP, June 2011).

Gallup, Inc., The Cost of Caregiving to the U.S. Economy, Gallup-Healthways Well-Being Index (December 2011), http://gmj.gallup.com/content/151049/cost-caregiving-economy.aspx

Houser, A., Gibson, M.J., and Redfoot, D., Trends in Family Caregiving and Paid Home Care for Older People with Disabilities in the Community: Data from the National Long-Term Care Survey. AARP Public Policy Institute Research Report 2010-09 (Washington, DC: AARP, September 2010).

Jacobsen, A., Kent, M., Lee, M. and Mather, M., "America's aging population," Population Bulletin 66, no. 1 (February 2011).

Johnson, R. and Lo Sasso, A., "The impact of elder care on women's labor supply," Inquiry 43 (2006):195-210.

Mace, N.L. and Rabins, P.V., The 36-Hour Day, 5th Edition (Baltimore, MD: The Johns Hopkins University Press, 2011).

MetLife Mature Market Institute, The MetLife Study of Caregiving Costs to Working Caregivers: Double Jeopardy for Baby Boomers Caring for Their Parents (Westport, CT: MetLife Mature Market Institute, 2011).

MetLife Mature Market Institute and National Alliance for Caregiving, MetLife Caregiving Study: Productivity Losses to U.S. Business (Westport, CT: MetLife Mature Market Institute and Bethesda, MD: National Alliance for Caregiving, 2006).

MetLife Mature Market Institute, National Alliance for Caregiving, and University of Pittsburgh, MetLife Study of Working Caregivers and Employer Health Care Costs (Westport, CT: MetLife Mature Market Institute, February 2010).

National Alliance for Caregiving, in collaboration with AARP, Caregiving in the U.S.: A Focused Look at Those Caring for the 50+ (Nov. 2009):18, 56-57, http://assets.aarp.org/rgcenter/il/caregiving_09.pdf.

Pavalko, E.K. and Henderson, K.A. "Combining care work and paid work: Do workplace policies make a difference?" Research on Aging 28, no. 3 (2006):359-74.

National Alliance for Caregiving and AARP, Caregiving in the U.S. 2009 (Bethesda, MD: National Alliance for Caregiving, and Washington, DC: AARP, November 2009). Funded by the MetLife Foundation.

Reinhard, S.C., Kassner, E., Houser, A., and Mollica, R., Raising Expectations: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers, AARP, The Commonwealth Fund, and The SCAN Foundation, September 2011.

Toossi, M., "Labor force projections to 2018: Older workers staying more active," Monthly Labor Review (November 2009):30-51.

U.S. Equal Employment Opportunity Commission, Enforcement Guidance: Unlawful Disparate Treatment of Workers with Caregiving Responsibilities (May 23, 2007).

U.S. Equal Employment Opportunity Commission, Employer Best Practices for Workers with Caregiving Responsibilities (2009).

Wakabayashi, C. and Donato, K.M., "Does caregiving increase poverty among women in later life? Evidence from the Health and Retirement Survey," Journal of Health and Social Behavior, 47, no. 3 (2006):258-74.