Where Do Family Caregivers Fit in the Debate Over Paid Family Leave?

The debate over paid family leave tends to center around two elements: 1) paid leave narrowly defined as “maternity leave” that supports new parents, and 2) differences between political parties over how to pay for it.

Last week’s Senate Finance subcommittee hearing on paid family leave followed this predictable script. Ivanka Trump spoke as the voice for paid maternity leave. Legislators debated how best to fund the benefit, ranging from the FAMILY Act (or Family Medical Insurance Leave Act), proposed by Sen. Kristen Gillibrand (D-NY), to Sen. Marco Rubio’s (R-Fl.) plan to draw upon social security benefits to fund the leave.

Bi-partisan support already exists for the current expression of the federal Family Medical Leave Act (FMLA). Since 1993, FMLA has provided up to 12 weeks of unpaid, job-protected leave for more than 100 million U.S. citizens. FMLA covers a wide array of individuals through vastly different seasons of care:

• an employee recovering from an illness,
• parents of a newborn or newly adopted child, or
• a family caregiver supporting a seriously ill loved one.

While many employees benefit from FMLA, the ones who do not take leave state that they cannot afford to take unpaid time off. In response to this common barrier, select states have begun to evolve their expression of FMLA into a paid benefit, which has spurred the current debate on a federal expression of paid leave.

A new report released today by the Families Valued Initiative of the Center for Public Justice, Time to Flourish: Protecting Families’ Time for Work and Rest, supports this evolution. Report authors Katelyn Beaty and Rachel Anderson stress that, regardless of how wage-replacement would be funded, a paid FMLA benefit will contribute to the flourishing of families. Following the contemporary script, their report focuses predominately on the parental leave expression of FMLA. Parental leave has a clear trigger event (birth or adoption) and is used during a clearly-defined benefit period that can be uniformly applied to all recipients.

However, the care needs of an ever-growing older population of the U.S. continue to be a blind spot in the conversation and understandably so. In contrast to caring for a newborn, the care journey for a seriously ill adult can be unpredictable, requiring intense care for a few days or weeks after crisis events, or may require a constant level of care for years. The average family caregiver devotes more than 20 hours a week to caregiving tasks. And 20% of Americans balance that unpaid part-time job with working full-time. Paid family leave would be helpful, but when would the benefit begin? Could it be taken intermittently? Is 12 weeks enough, too much, or too little time?

As I considered these questions at a recent convening on the report, I thought of Paula, a family caregiver who Naomi Cahn and I interviewed for our book on modern-day expressions of elder care. When Paula’s father, Lawrence, enrolled in hospice care, he called a family meeting. He wanted to stay at home to die. Paula’s profession as a nurse and her close proximity (she lived in a trailer on the back half of her father’s property) made her the perfect candidate to be his caregiver.

However, she couldn’t quit her full-time job at a local nursing home to devote all her time to her father. Paula knew about FMLA, but she could not afford to take unpaid time off. A paid FMLA, either federal or state, could have benefited Paula in the two months she cared for her dying father.

Enrollment in hospice care could provide a trigger event for a caregiver’s eligibility to receive a paid FMLA benefit. There are many reasons why this idea might work:

• The benefit trigger is tied to the care recipient. The parental leave benefit begins when an infant is born or a child is adopted. Using hospice enrollment as the trigger event for a paid family care benefit ties the benefit to the care recipient as well.
• Hospice is universally available. Hospice is both a federal (Medicare) and state (Medicaid) program. Caregivers of all ages and financial ability would be eligible.
• Society has a financial incentive to support family caregivers during a hospice enrollment. Hospice is not only the gold standard way to care for an individual at the end of life, but it is also the most cost-effective way to do so for society. For example, 25% of Medicare spending occurs in the final month of life for persons over 65-years of age when not enrolled in hospice care.
• Family members are already included in the hospice benefit. Every hospice provider must be able to provide a respite level of care, which supports caregivers during a time of exhaustion or need. Expanding caregiver support through hospice would build upon the precedent of hospice already being the only federal and state benefit that includes a reimbursement rate for family support.
• There would be a time limit on the benefit period. The average length of stay for a hospice patient in 2016 was 71 days (median length of stay was 24 days). The average family caregiver would need less than the 12 weeks already stipulated by FMLA.

In the final days of her father’s life, Paula sat vigil at his bedside. She called in “sick” to the nursing home. She understood that her job might be at risk, but she could not imagine being anywhere else. She sang songs, intoned prayers, and held his hand during his final moments. Paula is proud that she was able to make possible her father’s wish to die at home, but the stress of her job made caring for him more complicated. While her family survived, a paid FMLA could have helped them flourish.

Using hospice enrollment to determine eligibility for paid leave is just one viable option to consider. The good news is that the time appears ripe for the enactment of a federal paid family leave benefit. As this long overdue discussion of the FMLA continues, let’s not forget that FMLA is an intergenerational, pro-family policy. It’s important that we take time to determine how to administer a paid benefit equitably for the full array of family caregivers, including those caring for elderly or critically ill loved ones.

Rev. Amy Ziettlow is a minister in the Evangelical Lutheran Church in America and is the former COO of The Hospice of Baton Rouge. She is the author (with Naomi Cahn) of Homeward Bound: Modern Families, Elder Care & Loss (Oxford, 2017).

Editor’s Note: The views expressed in this article are those of the author and do not necessarily reflect the official policy or views of the Institute for Family Studies.