Caregiving Crisis: OMG, it's the FMLA issue!
30 Years of the Family & Medical Leave Act. Think caregiving doesn't apply to you? Our science-backed assessment determines IT DOES. Dedicated to a friend gone too soon.
Hey everyone,
This phrase has been rattling in my head lately: Caregiving comes for us all.
So much of the problem and delay in improving our care infrastructure (and the various permutations of woes that it causes) is because of the misconception that caregiving is a women’s problem. A family problem. A kid problem.
If more people (cough cough the largely male pop of U.S. lawmakers) realized caregiving affects everyone, then making the case for better support would be easier. Or not even necessary.
But how to show that we all are, if not currently, then someday, caregivers? 🤔 Science! I’ve dug deep into the part of my brain where my science knowledge sits (yes I had to take my college science classes pass/fail what of it; I’m arts and letters all the way1). And now I’m here to disprove — and disapprove — these notions by asking the following questions:
1. Are you human?
2. Do you have family?
3. Are there humans in your life you care about and/or are responsible for?
4. Does the passage of time affect you or the humans referred to in Questions 2 and 3?
5. Do you have a body? (Not someone else’s but your own physical manifestation on Earth… or if you’re a bajillionaire, then space or Mars.)
If you answered ‘yes’ to any of these questions: caregiving is coming for you. If you answered ‘no’… well, you still answered. And that means you’re likely human. And guess what? Caregiving is coming for you.
I’ve been thinking about this a lot lately because a beautiful, brilliant, effervescent friend died this week after nearly four years of cancer treatment. Mandy Jenkins was light and love, a pioneer in digital media and a person who threw herself enthusiastically into everything she did — work, mentoring, friends, travel, adventures. She had so much drive. She gave so much, and she did it all with humility, grace and humor. She and her husband, Ben Fischer, were the most supportive and loving (and fun!) of couples. They truly appreciated each other and were partners in all they did: moves across the country, career changes, through ups and downs, in life.
And then she got sick. Breast cancer. And Ben became her caregiver. Throughout her treatment, he was there. Caring for her, advocating for her, ensuring she had a high quality of life, seeing shows and traveling. Rushing to day-of appointments at clinics, knowing which medications need to be stored in which way, lining up care if he needed to travel for work, and later, maneuvering her into a wheelchair to go out to dinner with friends, asking a waiter to thin out a blueberry milkshake to make it easier for her to drink. In every way possible he was a caregiver.
Most people don’t expect to become a caregiver for their spouse — especially one so young. Mandy was diagnosed at 38. Ben did it and he did it beautifully. I’ll never forget the sweet smile on his face as he wheeled her out of their Brooklyn apartment building on what became our last evening out together. (Evening of the aforementioned thick blueberry shake.) The love between them was palpable. Care is love.
No one can predict life. We have bodies. We love people. We age… if we’re privileged to do so. Caregiving comes for us all.
Mandy was one of the first to subscribe to this newsletter. For anyone who knows her enthusiasm for new ways of storytelling, knowledge and sarcasm — and her steadfast support of her friends, this tracks. While she was in hospice, the Family & Medical Leave Act turned 30 years old. Infrastructure like that allows people like Ben — and so many others in Mandy’s family — to give care and love, and to be with those they treasure most. And it allows people living with illnesses to also take the time that they need.
So this issue is all about FMLA — where it came from, how it’s helped and where it’s going (or not, as the case may be🙄).
And this issue is dedicated to Mandy. She cared for so, so many and leaves behind a legacy of giving everything your all and doing ‘more’ (which was a tattoo she had). During her illness, she gave and gave. She used her voice — as a person living with and working with an illness, to advocate for a mindset shift in the workplace. “Sick people, we get the job done”2 was the name of her funny, heartfelt and empathetic talk. Even in death, she still cared. Mandy chose to donate her body to the Ohio State University College of Medicine. Her gift will impact young doctors and their patients for decades to come. (And body donation means less money to the funeral industrial complex!3) And a memorial in her honor is raising funds for the Breast Cancer Research Foundation. Mandy, your legacy knows no bounds. Thank you and we love you.
Thanks for being here. Please message with your thoughts for future issues. Our next monthly issue is (probably) March 31st. See you soon. Be kind and be ‘more.’
OMG Let’s Do a FMLA FAQ, OK?
Q: What is FMLA and who is eligible?
A: Omg! IYKYK, LOL, right? FMLA is the Family & Medical Leave Act, which guarantees (certain types of) workers in the U.S. up to 12 weeks of unpaid leave a year to care for themselves or a loved one -- without fear of losing their jobs. It covers workers whose employers have over 50 people (ie not small biz), and who have worked for their employer the past 12 months and worked 1,250 hours.4 The U.S. Department of Labor has a Big Gulp size FAQ if you want all the details.
The FMLA was signed into law by Pres. Bill Clinton on Feb. 5, 1993 — making it a 30-year-old millennial. It was introduced in every Congress since 1984, was vetoed by Pres. George H.W. Bush twice before being signed into law by Clinton. FMLA is considered the U.S.’ first national law to support people’s lives at work and with their families.
Actual footage of the signing ceremony after-party - the bill was his first to sign in office. Party!
“The FMLA is a case study of elected officials on both sides of the aisle — and advocacy groups representing diverse interests — joining together to support common sense public policy for the good of our nation,” writes the National Partnership for Women & Families, which wrote the first draft of the legislation. (See their deeper dive here.)
Q: How many people have taken FMLA over the years and why?
A: FMLA has been used nearly 463 million times, per research by the National Partnership for Women & Families. Last year alone, the group estimates nearly 15 million workers were supported by the FMLA. And why do they take leave? The group found it’s nearly evenly split between people taking it for their own health or to care for others. About 75% of leaves last 8 weeks or less, and 40% are two weeks or less.
Q: Why don’t people take leave?
A: People need leave at among the most difficult times in their lives and it’s heart-breaking when they cannot take it whether by choice or denial of FMLA. Here’s a collection of stories from A Better Balance, a national advocacy group. There are two main reasons people don’t take leave:
Economics: Many people cannot afford to take unpaid leave.
About 10.9 million workers needed leave in 2022 but did not take it, the National Partnership reports. And two-thirds – more than 7.2 million – say it is because they could not afford unpaid leave.
Ineligibility: About 44% of workers are not eligible for FMLA, the National Partnership says.
Of those who aren’t eligible, it’s because they work for small employers (15%), don’t work enough hours or haven’t worked for their employer long enough (21%).
In 2022, some 2.7 million workers ineligible for FMLA are estimated to have needed leave but did not take it because they feared losing their jobs.
This ineligibility particularly affects workers of color, women and solo parents, the group says.
The National Partnership illustrates these disparities:
Relative to other groups of women, Black women have higher labor force participation, and their families are more reliant on their income: nearly 80 percent of Black mothers are breadwinners for their households. But the FMLA's limitations – stringent eligibility rules and lack of pay – limit the ability of millions of Black women to support their households and care for their own health and their loved ones each year.
Q: What’s next for FMLA?
A: Say it with me: National! Paid! Leave! Movements for passage continue at the national and state levels, but progress is needed asap.
The U.S. remains the only high-wealth country without any form of paid leave, notes Vicki Shabo, policy expert and paid leave advocate at Better Life Lab. (Frequently quoted in this newsletter!) The FMLA was always meant to be a stepping stone to more, she writes. Not only do we need paid leave, but we also need to expand the definition of who people can care for. Currently: people can provide care under FMLA to children under 18 and adult children incapable of caring for themselves, parents and spouses.
This too-narrow definition of “family member” does not reflect the full range of care needs families have as our population ages and it is culturally mismatched to the extended networks of family care that are commonly found in families of color, immigrant families, LGBTQIA families, and families with disabled loved ones. — Vicki Shabo
There was a “glimmer of hope” for national paid leave in 2021 with the Biden administration’s “Build Back Better” plan, Shabo wrote. But care economy provisions did not make it into the final bill. (Oh, hey West Virginia Sen. Joe Manchin. 🙄)
The Biden-Harris administration continues to call for more changes, and it marked the anniversary by showcasing some of its actions and reasons for supporting paid leave.
Across the country, millions of workers still face impossible choices between keeping a paycheck and caring for their family or themselves. This is especially true for women, who shoulder disproportionate caregiving responsibilities, with real consequences for their ability to participate in the labor force and support their families over the course of their lives.
Examples of actions:
Encouraging heads of Federal agencies to provide leave for Federal employees when they need it, whether or not they've worked for one year.
Working with states on their own paid leave bills. The administration recently convened state legislators seeking to advance their own measures. So far, 11 states and the District of Columbia have passed paid leave. And the Department of Labor is creating a new website with information on state paid leave laws.
Other efforts include helping people diagnosed with cancer or their caregivers understand their rights.
Bottom line: Everyone needs access to paid leave to be able to care for themselves and the people they leave. And the definitions need to be expanded. Caregiving comes for us all. I keep thinking about it because of what my beautiful friend Mandy and her husband Ben have experienced. It comes for us all, but are our lawmakers ready to support us?
The wrap-up gods have smiled upon me. The combination of bettering our futures, FMLA, Bill Clinton, and Mandy, with her deep love of Fleetwood Mac, means of course, we’re playing this song. 💜
Signing off
Thanks, as always, for reading. Please send feedback, other questions for the FMLA quiz, and favorite Fleetwood Mac tracks. If you found value in Caregiving Crisis, please share with a friend. See you soon.
Caregiving Crisis is a newsletter written by Emily Fredrix Goodman. We aim to publish monthly but other things may get in the way.
As evidenced by my🔥 placement of that semicolon. I know what I’m doing! 👊
Mandy loved being smart with her money. She got her wedding dress on eBay! (And that inspired me to be creative with mine… I got a bridesmaids dress in white.) A few months before she passed, we were out to eat and a lack of service meant that to take home my son’s s’mores pudding, I had to take the bowl… And figured I might as well take the serving spoon. Mandy was very into this and I now refer to that spoon as my ‘Mandy spoon.’ 🥄💟
Sooo I found out I was preg with my son in-between accepting a job and starting. I was PANICKED that I wouldn’t be eligible for FMLA because I would need it well before 12 months with the company. I tried to do the math to see if I could cram 1,250 hours of work into 9 months (which turned into 8), and HR told me no - you can’t do that. Luckily, they had a generous leave policy that applied to me. I marked one year with the company right after coming back from leave. How many others are in stressful situations like this without the benefit of leave offerings from their employers? UGH