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Beyond babies: Families use paid leave to care for aging parents, ailing loved ones
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Editor's note: This article is part of a series on paid family leave in the U.S. Read the first article here.

LEHI, Utah Its the end of a painfully long February day that started at 5 a.m. when Jasmine Parker got up to get ready for work, and nightfall finds her standing exhausted in the snack aisle of the Fort Union Target store, topping her packed grocery cart with boxes of Ding Dongs.

Every minute counts, so as she heads for the checkout line, shes already divvying up the groceries into two piles she'll deliver to separate houses. One stack is noticeably heavy on sweets and soft foods like Ensure and applesauce. She tosses the adult diapers on that pile.

Parker, 38, has been managing two separate households: the one she shares with husband Scott and their two nearly grown sons in Lehi and the home she grew up in, 24 miles and 32 minutes north, in Cottonwood Heights, where her dad, Dick Fisher was living with a terminal illness.

Parker shops for both and makes sure both sets of bills are paid. She supervises the cleaning and the details that make both households run all while working full time for a local police department.

Fisher, 79, died Tuesday of chronic obstructive pulmonary disease. The man who once sailed the world in the Navy and climbed steep mountains for the sheer joy of motion spent his last months tethered to a small dining room table by a long oxygen lead, bone thin and so weak he could barely open the blister pack that holds the antibiotic he was supposed to take.

Parker was tethered, too.

The rope that bound her was love and responsibility, sandwiching her between the needs of her own family and the needs of her father. And like nearly 44 million other caregivers in America, she carved time from personal, family and career demands to care for someone she loves.

Parker is a daddys girl who cashed in her sick leave and vacation time to take him to appointments and be close when he was having an especially rocky day. She was worried about running out of paid personal leave which was likely to happen soon but would have continued her caring unpaid, burning hours under the Family and Medical Leave Act, which would have protected her job but not cover the income she'd miss.

When most Americans think of family and medical leave, they picture maternity or paternity leave new moms and dads caring for babies. The truth is, more than 80 percent of leave takers do so in order to care for their own medical needs or those of an aging parent, ailing spouse or sick child, according to the U.S. Department of Labor.

I think all of us tend to forget that paid family and medical leave covers a host of other conditions, says Jane Waldfogel, a professor of social work at Columbia University who has studied this topic for nearly two decades. If you think about it that broadly, it starts being something that every employee is going to need at some point.

Because of that, paid family leave is increasingly on the national radar.

Experts and advocates point to a rapidly expanding collection of companies announcing paid leave policies, bipartisan reports on the issue, references to it from the White House and a growing number of states offering or proposing their own statewide paid-leave policies.

A bill before Utah legislators this winter, for example, proposed paid parental leave for state employees, but stagnated in committee.

While conversations are increasing, they often snag on two issues: Who will benefit from leave, and who should pay for it?

Often, people assume paid leave means forcing or mandating employers to pay those costs out of their profits, said Isabel V. Sawhill, senior fellow in economic studies at the Brookings Institution. Many employers do contribute to paid disability insurance for employees, but most states offering paid leave for broader caregiving need do so through small payroll contributions from employees a type of social insurance, says Sawhill, meaning everybody has some skin in the game theyre contributing to the system and (can access) benefits when they need it.

Several studies show that large percentages of businesses in states with paid leave policies report neutral or positive feelings about them, but such policies don't always operate without some challenges, whether it's paperwork issues, lack of awareness or even unintended business consequences.

For Parker, even a rocky system would be better than nothing.

If Utah offered paid family leave, Parker says she'd have a buffer time to deal with crises in her own immediate family, time for a vacation, time to just breathe. It would be amazing, she says. "I think I'm probably like a lot of people. Sometimes, it feels pretty overwhelming."

Growing need for care

In 1970, just under 10 percent of the population were senior citizens.

By 2030, more than 20 percent of U.S. citizens will be 65 years or older, and 70 percent of those will need long-term, non-medical care at some point, whether its help with dressing, bathing, using the restroom or other activities of daily living.

Those numbers wouldnt be so concerning if they werent juxtaposed against the shrinking number of caregivers.

The U.S. Census charts this through its dependency ratio the number of elderly or children who depend on someone else for support compared to the number of working, non-dependent citizens. The higher the ratio, the greater the demand on the working-age population.

In the 60s, the dependency ratio was heavily skewed toward child dependency, due to all the boomers born between 1946 and 1964.

As boomers started retiring in 2011, the dependency ratio began tipping the other way. By 2020, it will be 28 elderly folks for every 100 working-age employees, and by 2050, up to 36.

Experts worry about this caregiving cliff and are calling for more support for existing caregivers, who are more often than not untrained but loving family members like Parker.

In Utah, there are 336,000 family caregivers who provide more than $4.2 billion of uncompensated care annually, says Laura Polacheck, communications director of AARP Utah.

Nationwide, that number skyrockets to 43.5 million caregivers who have provided care for a family member in the last year.

Yet while family members average 24-plus hours each week caring for loved ones, some people still dont identify with that title theyre just helping grandma with shopping, laundry and house cleaning, or making sure dad gets to his chemo appointments and eats dinner.

When its pointed out that such help is caregiving, people finally realize, Oh yeah, thats me, says Michael Wittke, director of advocacy for the National Alliance for Caregiving.

People dont know that there is a movement to support them as a population, or that they belong to a population that society recognizes is going to be put under increased demands as more and more baby boomers age, Wittke said.

Traditionally, that pressure has been felt by a woman in her 50s a daughter or granddaughter yet, today, nearly a quarter of caregivers are millennials, ages 18-34, and just as likely men as women.

More than half of them also work full time.

That means more employees asking, How many hours can I afford to be away from work? Do I turn down this promotion because it might mean more hours away from my family member? and even, Do I need to quit my job? says Wittke.

While the National Alliance for Caregiving is not a lobbyist group, when it talks with state legislators and advocates about support for caregivers, it emphasizes that paid leave policies are great if theyre broad enough to include everyone, not just new moms and dads.

The family caregiver has a strong role to provide, said Wittke. They should be supported in such a way that their quality of life is not diminished and their financial security is (not) compromised.

Why paid family leave?

Right now, the only national caregiving support for employees is the unpaid leave available through the Family and Medical Leave Act, which guarantees qualified employees access to 12 weeks of unpaid, job-protected leave for caregiving needs.

It was an important step when passed 25 years ago, advocates say, but left a lot to be desired, only covering full-time employees who have worked at least a year in companies larger than 50 employees. And its unpaid.

Since then, five states have implemented or passed their own paid family leave policies: California, New Jersey, Rhode Island, New York and Washington state, plus Washington, D.C.

Were really at a point where people understand, even if you have the job protection to take that time off for leave, few can afford to do it, says Sen. Gayle Goldin, D-Providence, a champion for Rhode Islands paid family leave policy, called Temporary Caregiver Insurance. We need to be able to have paid time off to deal with those opportunities, either positive or in crisis moments and not be concerned about falling into poverty.

On the whole, Americans like the idea of paid leave.

Pew Research Center polls show that 85 percent of Americans believe employees should have paid leave for personal medical reasons, 82 percent agree with paid leave for new mothers (69 percent for new fathers) and 67 percent believe employees should get paid leave to care for a family member with a serious health condition.

The debate arises over who should pay for that leave.

A Pew survey from March 2017 found the country nearly split on whether the government should mandate that employers provide leave (51 percent) or allow businesses to decide for themselves (48 percent).

While many businesses have chosen to offer paid leave independently, having a federally determined benefit "floor," funded through a national payroll tax deduction system, would even out the nation's current patchy paid-leave coverage, plus ensure paid-leave protections for low-wage workers those most likely to have little to no paid time off, explained Aparna Mathur, resident scholar in economics at American Enterprise Institute and co-author of a recent bipartisan report on paid family leave.

This social insurance approach is preferable to a forced mandate, Mathur explained, and is the approach taken by most of the states offering paid leave. It's just like car or home insurance, only employees are investing in themselves. It's also the basis of the Family and Medical Insurance Leave Act, or FAMILY Act a bill proposed by Sen. Kristen Gillibrand (D-NY) and Rep. Rosa DeLauro (D-CT).

This is exactly the role of government, to make sure that people can take care of themselves and their families in a way that is setting up the structure, but having it be self-funded, said Ellen Bravo, co-director of Family Values @ Work, a network of state coalitions working for policies like paid leave. A self-paying system people recognize that makes a lot of sense.

Waldfogel has surveyed businesses particularly small and medium-size businesses (10 to 99 employees) in Rhode Island, New Jersey and New York and found that nearly two-thirds of employers are very or somewhat supportive, and that 75 to 85 percent are either supportive or neutral toward paid family leave policies.

Yet that also means there's a section of business and organizations that still oppose mandated paid leave policies.

Increasing payroll taxes for employees and sometimes employers ends up becoming a "tax on employment," says Demian Brady, director of research for the National Taxpayers Union Foundation. And often, the price tag for such a policy ends up being higher than promised.

"It's better to find optional ways for employers to be able to implement such programs," he says, "rather than forcing mandates or higher taxes that ultimately hurt employment."

Taking leave

C.W., a 29-year-old northern California woman, is happy to pay roughly $15 per $1,500 bi-monthly paycheck, because it provides her a safety net against the autoimmune disease shes dealt with since she was 12.

In February 2017, C.W., who asked that we identify her by her initials for privacy, began experiencing headaches, fuzzy vision, joint pain, muscle cramps and gastrointestinal issues signs of an impending full-body meltdown.

She held off until late May, then spent the next eight weeks on the couch, driving five hours to her medical appointments and occasionally schlepping through the neighborhood when she had enough energy to walk her dog, Sadie.

Under California law, after a week of leave, C.W. could claim 55 percent of her take-home pay for the remaining weeks she was out sick. She filled in the rest of her hours by using accrued sick and vacation days. (As of January 2018, California increased the percent of pay to 60-70 percent.)

Im really grateful for it, she said. It allowed me to take leave that I needed, knowing that Id eventually get paid, so that was comforting.

However, researchers have found that not everyone knows about paid leave even when their state offers it.

In California, four years after their paid leave policy began, only 18 percent of parents with a critically ill child had heard of the program and only 5 percent had used it.

One year after Rhode Island's program began, 51 percent of people knew about it but those earning less than $40,000 were significantly less likely to have heard of the program, compared to employees earning more.

For C.W., knowledge of the program was crucial, because without her 2-month restorative break, she's pretty sure she would have been forced to quit her job an education job she loves and is good at.

Without her leave being paid, shed have burned through all her savings and would have had to ask others for financial help.

C.W. knows the system isnt perfect there were conflicts with bosses over the time card process, and administrative delays meant she didnt actually get paid until she got back to work but shes still grateful for it.

I dont want to be a burden, she says, but I know that I have (leave) there if I need it. I hope I never need it again, but well see what happens.

Building policies

C.W. was able to take leave because California has had paid disability leave since 1946. Rhode Island, New Jersey, New York and Hawaii have similar decades-old structures, often called temporary disability insurance (TDI).

With existing scaffolding, it was relatively easy for California to add paid family leave in 2004 the first state to do so.

New Jersey and Rhode Island followed a few years later, and New Yorks policy took effect Jan. 1, 2018 all by adding on to their TDI structures, often calling it TCI, or temporary caregiving insurance.

When Washington state rolls out paid leave benefits in 2020, it'll be the first state to have built a program from scratch and could set a national precedent, says Waldfogel.

"It feels to me like this (paid leave) movement is accelerating," she says. Especially now with a big state, Washington state, that didnt have a TDI program, paving the way to doing it in a non-TDI state. I think were going to see more states passing these kinds of laws.

Connecticut, Hawaii, Oregon, Massachusetts, Vermont, Colorado, New Hampshire and Maine are discussing paid family leave in their 2018 legislative sessions, and Minnesota, Montana, Georgia, Pennsylvania and Wisconsin have discussed it at some point.

Only Washington, D.C., has chosen to fund its paid leave program, which will start in 2020, entirely through employer contributions, and has faced significant backlash over the decision.

New York's policy of employee-funded paid family leave has only been active since Jan. 1, 2018, but Jennifer Apetz, 61, can already see the pros and cons.

As owner of Ferrel's Garage along with her husband, Paul Ferrel, she was glad they could offer paid time off to their son, one of their mechanics, whose wife had a baby in January. Thankfully business was slow and their other two mechanics divvied up his workload.

But for Apetz, it still meant time filling out several pages of paperwork, plus hoping that no one else got sick or needed time off during that window.

"If he was out, and my husband was sick, then what do I do?" she asked. "Everything really can come to a screeching halt very quickly."

She wants to take care of her employees, which is why she pays thousands of dollars in low co-pay health insurance and disability insurance. But she's worried about the logistics of adding paid family leave into that existing disability policy.

The new law allowed her to start withholding small amounts from her employees' paychecks last July, but come Jan. 1, 2018, she was required to pay the full cost of a year's worth of paid family leave insurance essentially footing half the bill herself, until she can collect the rest of the premium over the next six months.

She'd rather see a system where employers can collect the paid family leave tax from employees, and pay for the insurance policy on a quarterly basis protecting employers if an employee quits after a short period of time, and shielding employees from losing out on their payments if a company folds.

The Society for Human Resource Management doesn't take positions on state bills, but overall, it prefers approaches that encourage rather than demand action, said Lisa Horn, director of congressional affairs for SHRM.

"We don't think the government is the best entity to deliver a framework for these types of benefits," she said. "We think every employer, every organization is unique, and so is their workforce."

They "preach" to their members that being an effective organization requires offering a competitive rewards package that matches employee needs, she said.

Dane Linn, a vice president for the Business Roundtable, a group of CEOs of leading U.S. companies such as Walmart, Macy's, Verizon Communications, AT&T and Johnson & Johnson said they dont have a policy on paid family leave, but havent come out against the concept either.

They are just concerned about a federal mandate that swoops down and interferes with individual company policies many of which are far more generous than could be offered by states or the federal government, he said.

Looking forward

Back in Utah, Parker isn't worried about TDI systems, payroll taxes or federal mandates. She's now planning a funeral and thinking about all the times she couldn't be with her dad because she had to be at work.

She remembers how he would sit at his kitchen table, choking and drinking his way through an astonishing amount of water to dilute the mucous that continually gagged him. He would watch TV, and when he got tired, mute the TV and rest his head on the little wooden table.

Parker always made sure Fisher's faded Famous Dave's take-out bag, never far from his side, was filled with crucial medicines that kept his blood pressure and anxiety down, his blood thin, his breathing possible. It was as vital as the oxygen lead that snaked behind him.

"It makes me sad," Parker said in an interview before his death. "His body is going and he's so tough, he can't accept it. He mourns all the things he thinks he should be able to do."

When he first got sick, father and daughter had deep conversations, but lately she did most of the talking while he just tried to breathe. Often, they would sit quietly together, both exhausted.

When she was with him, she often worried her work wasn't getting done. When she was at work, she always wondered how he was doing. She kept a mental tally of her personal time and tried desperately to meet most of his needs in her ever-shrinking free time or on the weekends. Often, she'd be with him eight hours a day on Saturday and Sunday.

It was always a careful balance, because she needs her job and the income it provides, but he needed her, too. And she knew if she ran out of her paid personal vacation and sick hours, both their lives would become more difficult.

"I actually have been really fortunate to not have to use unpaid hours yet," Parker said before her dad's death. "But it's getting close. Then we'll have to see what happens. Our lives are pretty crazy right now and sometimes I really do feel overwhelmed."
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