PTO for Rare Disease Caregivers Should be Commonplace

The State of PTO

Of all of the industrialized countries in the world, the United States is the only one that in the year 2020 still doesn’t guarantee that workers can obtain paid family leave when needed. Now that doesn’t mean that no one in our country can obtain paid family leave, but it isn’t a super common trend. In 2018, even to take care of a new baby, only 17% of workers could take PTO. For small companies, this number is just 11%.

Donald Trump signed a bill which provides all federal employees PTO for adoption, fostering a child, or birth. Additionally, 8 states and DC require employers or workers to pay into state funds for PTO.

Broader definitions of PTO allow workers to take off to care for a sick family member or an elderly parent, to grieve after the death of a loved one, to take emergency temporary custody of a child, to bond with a new grandchild, and even to take care of a new pet.

Part of the changes that have been made in recent years come from employees advocating for themselves. It’s also come due to a tightening labor market. With employees speaking up, employers are facing pressure to change their practices in order to both recruit and sustain their workforce.

Here are some stories of employees who have been able to use PTO to care for their loved ones.

Jackie Christie

Jackie works at Best Buy in Minnesota. Her company allows PTO for family care-giving for up to 4 weeks.

Her mother passed away in 2017 and Jackie found it difficult to balance work, her children, and her life, as well as taking care of her mom. She tried to work from home, but she felt guilty. She didn’t feel as though she was fully present with her mom.

Last February she was hit with another problem when her dad was diagnosed with mesothelioma. It was aggressive. He was facing terrible side effects and Jackie was doing all she could to care for him. But this time, she was allowed to have paid time off. As her dad entered hospice, she was able to spend all her time with him. She explains that the time off relieved her of guilt, and it gave her permission to enjoy every moment she could with her father.

Jodi Hutchison-Sanford

Jodi works at Bristol-Myers Squibb in New Jersey. This company allows employees 8 weeks of paid leave specifically for caregiver obligations. They then are allowed an additional four weeks off of unpaid time.

Jodi’s husband’s daughter, named Maddie, was diagnosed with postural orthostatic tachycardia syndrome (POTS). Later, it was discovered she also had a brain tumor. She faced surgery, proton radiation, a second surgery, 5 types of chemotherapy, and an immunotherapy drug. Sadly, nothing worked. After facing a seizure, she was paralyzed on the right side of her body. It was then that Jodi took her leave.

She was able to manage the logistical needs of the family so that Maddie’s parents could spend every last moment with their daughter. Maddie passed away in March of 2019.

Jodi took a total of 12 weeks off, including time for herself to grieve.

Brian Wiggins

Brian works at Revere Copper Products in New York. In the state, employees can receive up to 60% of their pay during necessary time off.

Brian explains that even though they’re not paid their full salary, it undeniably helps. Brian said he’s now helped other employees at his company sign up for it, something they never would have done before, even for the birth of their child.

Brian’s own daughter is diabetic. When she was first diagnosed she was put in a medically induced coma for 9 days. He and his wife didn’t leave her bedside.

With neither parent getting paid, they were relying on tax rebates to pay their bills. Even the 60% salary has helped the family immensely. Brian explains how necessary his time off is. Without it he wouldn’t even be able to take his daughter to her necessary appointments.

He also describes how the paid time off helped his daughter feel less guilty about her healthcare costs and the time she needs. It’s comforting for her to know that there’s money coming in and that she’s not a burden, something no child should ever feel.

Brendan Ricci

Brendan works at Deloitte in Virginia. This company gives a whopping 16 weeks of PTO for employees to care for family members or a new child.

When Brendan’s mom started feeling sick, they all suspected it was Lyme disease. It turned out to be much worse. The breast cancer she had faced back in high school had come back and spread to her lymph nodes, skull, brain, and bones. Brendan immediately took time off to help his dad and sister take care of her.

He moved up his wedding with his fiancé so that his mom could be there for the ceremony.

After her funeral, he took additional time off for bereavement. He used this time to transcribe some of his mother’s journals.

These stories showcase the importance of PTO with flexible reasons. Yes, parents need time off to care for a newborn. But just as important, is time to take care of sick family members, and loved ones facing rare diseases.

You can read more about these broader PTO initiatives here.


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