I’m A Caregiver — & Any Paid Family Leave Plan Should Include Us

Photographed by Refinery29.
My mom was rushed to the hospital in April 2017 with symptoms of what she at first thought was a serious flu, but turned out to be acute myeloid leukemia. She already had limited mobility from Parkinson’s Disease, and the brutal first round of chemo left her mostly unable to walk thanks to a side effect called neuropathy. After a several-months-long remission, her AML is now back.
For me as an only child, this has meant shuttling back and forth between New York, where my job is, and D.C., where she and my dad live, so I can help her with everyday tasks. While I’m usually only there on weekends, it’s getting to the point where she needs round-the-clock care. Suffice it to say, I’ve given up on unpacking my weekender bag and I do a lot of half-sleeping on Amtrak trains.
I count my privileges every day. For my job letting me work remotely so I can file stories during the day and be with her in the mornings and evenings. For being able to afford the never-ending train tickets. For my mom’s private insurance, which covers a home health aide who attends to her three times a week. That she’s not one of millions of people who has to choose between dying and being in debt.
Another thing I’m grateful for is that I live in New York, one of only four states in the U.S. that has passed and implemented a paid family leave policy. (The others are California, New Jersey, and Rhode Island.) It provides employees with up to eight weeks of partially paid benefits, and covers not only new parents but also caregivers like myself, as well as those who need to help loved ones when a family member is deployed in the military. Thanks to the law, which went into effect on January 1, I’m scheduled to take a week-and-a-half leave that starts later this month.
This will give my family some much-needed peace of mind. I can be around my mom more and give her the care she needs. Plus, I won’t have to worry about losing work time or taking a huge financial hit.
Losing Thousands
While I’m lucky to only be under minor financial strain, working families lose an estimated $20.6 billion in wages each year because most U.S. citizens don’t have access to a comprehensive federal paid family leave program. Instead, we make do with the Family Medical Leave Act (FMLA), under which you are allotted 12 weeks of leave to take care of a child or sick relative (however, only about 60% of all employees are eligible for it, since it only applies to companies with over 50 people and carries other restrictions).
The other (giant) caveat? It’s unpaid, which spells stretched budgets, racked up debt, and added stress. That’s why about 60% of caregivers report making changes like cutting back their hours, finding a different job, or stopping work completely.
Chrissy Cox, 34, who lives in Richmond, VA, left her restaurant-supervisor job in 2016 to move in with her sister Courtney, who was living with a traumatic brain injury. (A semi-trailer truck plowed into her as she was pulling out of her rural driveway.) Now 27, Courtney is in need of 24-hour care, and had to learn how to walk and swallow again.
Chrissy lost a total of nine months’ pay, or about $16,000, while her husband, an accountant, covered most of Courtney and her husband's daily expenses. There had been talks of promoting her to manager at work, an opportunity that would have meant a big raise and bonus, but she had to turn her back on it. “We lived off my husband’s income, the limited amount my brother-in-law could contribute — he’s a pipe welder and work is spotty, he could only contribute $600 a month — and two contributions made by family members to help,” she told Refinery29.
If Virginia (better yet, the entire U.S.), had a paid family leave policy, Chrissy said, her life might not have turned upside-down. “We had no idea what we signed up for in July 2016, and that this is what life would be like. I thought it would be for a couple of months, I’d keep my job, and I’d be back to where I was in no time. I am happy to have helped my family this way. But if I had the financial support at the beginning, I know a lot of the issues we experienced could have been avoided.”
In December 2017, Kate Boone, 26, an account manager with Century Support Services in North Huntingdon, PA — another state without a paid family leave law — had to choose between using the unpaid FMLA leave or continuing to work while taking care of her mother, who has Parkinson’s Disease and broke her hip twice within a month.
Boone had exhausted all of her paid time off during her mother’s two surgeries. “My boyfriend and I tried to think up multiple ways to do this, living on my credit cards, living off her small Social Security check, taking out a small personal loan from my boyfriend’s dad…none of it was adding up,” she told Refinery29.
Eventually, they made the decision to house her mother in a personal care home, which costs $2,200 a month. Boone makes about $3,750 a month ($45,000 a year), and pays $1,500 for the home, which leaves her a little over $2,000 for other expenses. Her mother contributes the $700 difference.
“If FMLA were paid, I could have easily cared for my mom. It’s so silly that I’m literally paying over $2,000 a month to be able to work and collect a paycheck and ensure my mom gets cared for,” Boone said.
Not to mention the impact on her emotional health: “It’s very difficult to watch your mom decay into someone who can’t even brush her own hair and is confined to a wheelchair. The emotional toll caused me to spend a lot of days using my PTO to stay in bed and sleep all day.”
The “Rubanka” Proposal
This month marks the 25th anniversary of President Bill Clinton signing FMLA into law, and — amid the barrage of calls for action from advocates and politicians — we’re once again reminded that the U.S. is the only industrialized country in the world still missing a national family leave policy that doesn’t leave us broke (on top of being emotionally depleted) after caring for a loved one.
Democrats, backed by several nonprofit groups, have been trying to pass a comprehensive federal plan for years. Recently, Republicans hopped on the bandwagon, but with a completely different type of proposal. Ivanka Trump and Florida Sen. Marco Rubio are in talks about a new paid family leave bill, something Ivanka has made one of her signature issues in the White House. There is also one in President Trump’s 2019 budget plan, released Monday, as six weeks paid leave for parents and adopted parents of new children — which, again, doesn’t help non-parent caregivers. (The White House did not respond to a request for comment.)
Under the Ivanka-Rubio plan, which is based on a proposal from the conservative Independent Women’s Forum (IWF), new parents, including adoptive ones, would receive 12 weeks of benefits in exchange for tapping into their Social Security funds early. It does not include time off to care for a sick relative.
When asked why, IWF president Carrie Lukas, who helped craft the proposal, told Refinery29: “We thought that this would be a good starting point — to help some of the hardest cases — and could be tried first to make sure that it works well administratively...but then could be expanded to provide access to caregivers and situations currently covered by FMLA.” She added: “It’s maybe not a dream scenario for some people, but a lot of folks will see it as a solution.”
Rubio echoed her in a tweet, in which he wrote, “[M]y goal isn’t the ‘perfect’ plan, it’s 60 votes for [a] law better than status quo.”
But many Democrats see the Ivanka-Rubio plan, which is still in the rough-draft stages, as watered down and incomplete — partially because it does not include a caregiving component. Their argument: What’s the point of a paid leave plan that excludes three-quarters of workers? After all, according to the Department of Labor, 19% of workers take FMLA to provide care for an ill family member, 22% for the birth or adoption of a child, and 57% for their own illnesses.
From there, it stands to reason — and is a common refrain among Democrats — that caregiving is an essential part of a good paid family leave plan.
Not Enough
While Lukas said her group has been “reaching out to Democrats and left-of-center organizations,” no one has been publicly supportive yet. Democrats, along with nonprofit groups, are instead pushing for the Family And Medical Insurance Leave (FAMILY) Act, modeled on the successful state programs, introduced in early 2017 by New York Sen. Kirsten Gillibrand and Connecticut Rep. Rosa DeLauro.
The FAMILY Act would provide workers with up to 12 weeks of partial income, and covers pregnancy, childbirth recovery, the birth or adoption of a child, your own serious health condition, and, yes, caregiving. It would cover workers in every company, no matter the size, and cost the average person under $1.50 a week, paid through small employee and employer payroll contributions. But the majority of Republicans, including the Trumps and Sen. Rubio, won’t get on board with it.
“If the president was really serious about creating a paid leave program that would help all workers, he would support my #FAMILYAct. Actions speak louder than words,” Gillibrand tweeted.
Rep. Rosa DeLauro told Refinery29 in an email:
“Any proposal that stops short at parental leave only, does not cover at least up to 12 weeks, does not have a stable financing mechanism, or delays workers’ Social Security benefits, as Rubio’s plan reportedly proposes, is insufficient and will not actually help workers... We need a policy that includes paid time off to care for a seriously ill or injured family member.”
Many policy experts agree that the FAMILY Act makes the most sense for workers. Proposals that only focus on parenting ignore the fact that millennials are the newest “sandwich generation,” Ellen Bravo, co-director of Family Values @ Work, told Refinery29 — lots of us have aging parents and small children.
According to the 2015 Millennial Caregiver Report from the National Alliance of Caregiving and the AARP Public Policy Institute, people ages 18 to 34 make up nearly a quarter of the approximately 44 million caregivers in this country. Millennial caregivers spend an average of 21.2 hours a week caring for parents, grandparents, and other relatives, and an average of 34.9 hours a week at their jobs. The majority aren’t paid for their caregiving. And, unsurprisingly, women do a disproportionate amount of it.
It’s not too tough to do the math here and see that many people in our generation are stretched thin time and money-wise because we’re not getting paid time off. For some, there are also worries that caregiving could spell “career suicide,” as entrepreneur Hannah Becker writes. Financial ruin isn’t the only concern among a generation that has been raised to value achievement. It’s certainly something that creeps into my mind when I work late at night at the hospital, in hotel rooms, and on that Amtrak train.
Piecemeal Policies
While a federal policy still eludes us, we’re slowly patching up pieces of our ailing framework. States including Georgia, Hawaii, Massachusetts, and Vermont are working on adding themselves to the roster of places with paid leave policies that include caregiving. And, some corporations are stepping up their employee programs to make them more competitive.
Recently Starbucks, Walmart, and CVS announced more generous paid leave policies for their employees. Walmart, for example, now provides full-time hourly associates in the U.S. with 10 weeks of paid maternity leave and six weeks of paid parental leave, which is the same as for salaried workers. Previously, they only received six to eight weeks at half pay, which only applied to birth moms, leaving out adoptive parents and many LGBTQ couples.
But only about 13% of the private-sector workforce gets paid family leave from their companies at all. And the vast majority of companies don’t offer paid leave for caregivers. According to a November 2017 report by the nonprofit group PL+US: Paid Leave for the U.S., the caregiving landscape among American corporations looks bleak: Only two of the U.S.’ 70 largest employers — Deloitte and Cargill — offer any form of paid caregiving leave, while only about a third of top employers offer short-term disability to fill the gap. Other companies that announced paid caregiving leave, all in 2017, include Adobe, Facebook, and Vanguard. (COO Sheryl Sandberg touted Facebook’s commitment in a heartfelt letter where she mentioned her own family.)
Bravo said that while it’s a step in the right direction for corporations to expand their paid family leave policies, the solutions are still piecemeal. At the end of the day, state laws and company policies don’t add up to a federal law that covers every worker.
“I think it’s fine to see more examples as long as we remember that the solution won’t come from voluntary action alone,” she said. “After all, if voluntary action is what we rely on, we would still have lots of people working for below minimum wage and see more problems in terms of sexual harassment and race and gender discrimination.”
Because of voluntary action on the part of New York state, I won’t have to clobber together sick and personal days I may need for myself down the road. Being able to give my mom the care she needs, and spend more time with her at this critical moment, is priceless to me. It’s a right I would extend to everyone if I could.

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