Anne Marie Pearson of West Chester, Pennsylvania, took care of her sister, Joanne, five years ago when she was dying of cancer. “This was a responsibility I couldn’t walk away from – this was family,” Anne Marie said. When she requested leave under the Family and Medical Leave Act (FMLA), she was told the law didn’t cover siblings. Anne Marie had to leave her job of 17 years. Since then, she has spearheaded efforts to pass a state bill that would expand the definition of family to include siblings, grandparents and grandchildren.
That bill, HR 298, had a hearing today before the Pennsylvania House Committee on Labor and Industry. Below are excerpts from the testimony of Family Values @ Work Director Ellen Bravo.
In 1995 I was appointed to the bipartisan Commission on Leave appointed by Congress to evaluate the impact of the Family and Medical Leave Act. We held three hearings across the country to gather input from employers and employees. At one of these sessions, a woman testified about losing her brother to AIDS. She and her siblings were all able to be with him in his final weeks. She thanked the Commissioners as she described how much the physical and psychological care they were able to give meant to him and to them.
“Thank your employer,” we had to tell her. “Employers can always go further than the law, but FMLA does not include siblings.”
I thought of that woman a few nights ago, when I attended the celebration of the life of Jeremiah, who died of a rare form of cancer at age 26. When he was first diagnosed seven years ago, his older sister, Moriah, had just accepted a job in Minnesota and was ready to move from their hometown of Milwaukee. She never left town because she wanted to be with her brother as he battled this disease. This fall, when it was clear that Jeremiah was out of options and would have to enter hospice care, Moriah requested FMLA leave.
“Sorry,” her employer told her. “The Family and Medical Leave Act doesn’t include siblings.”
For Moriah – as for any of us – that was like being told, “Siblings aren’t family.”
California recently passed a law similar to the one you are considering. One of those who spearheaded that fight is Donald Bentley, a civil engineer. With the help of a full-time caregiver, Donald provides round-the-clock care for his brother George, who has muscular dystrophy and is a quadriplegic. Donald has testified about the penalties and discrimination he’s experienced at work because of these caregiving responsibilities which make it impossible for him to accept last-minute requests to work overtime. Should George have needed emergency care, Donald would not have been allowed to use family leave.
Trish Hughes Kreis also worked in support of that California bill. She lives in Sacramento, where she manages a local law firm and cares for her brother, Robert, age 47, disabled due to lifelong intractable epilepsy. Fortunately, Trish’s employer has worked with her while she juggles Robert’s numerous appointments and hospitalizations. Trish points out that reflecting the realities of family is not a favor, but a smart business move,
“As a manager,” she says, “I know that unpaid, protected leave has not placed an undue burden or cost to our business. It may be an inconvenience to find temporary coverage, but it is not insurmountable, especially considering the benefits to the firm of standing by our employees. This flexible approach has saved us money by reducing turnover costs.” Trish is grateful to have an understanding employer – but she knows not everyone does.
Last February, on the 20th anniversary of the signing of the FMLA, President Bill Clinton spoke about the importance of this legislation – and the need to expand it. He reminded the public that laws are not monuments; they’re meant to improve over time. “People desperately want to have successful families, to be good parents, to have a job and succeed at it,” he said. “If you take one away to get the other, the country pays a grievous price and every life is diminished.”
He was right. We all lose – the employer who has to replace an experienced employee, the sibling who struggles to pay bills, the roofer who loses the job because the client can no longer afford the repair and will have to make do with buckets under the leaks; the deli owner whose place she can’t afford to patronize.
We know that the involvement of loved ones is critical to the recovery of brain trauma patients. According to Dr. Stephan Mayer, director of the Neurological Intensive Care Unit at Columbia University Medical Center, “The common denominator is a present, loving and supportive family. I can’t say how important it is to have your loved ones around you helping you battle through.” For many families, that loved one is a sibling, or grandparent, or grandchild.
We hear the same analysis from hospice workers. At the memorial for Jeremiah in Milwaukee, one of the nurses who’d cared for him told me: “We provide excellent care, but we can’t be in the room 24/7. The hands of loved ones that perform dozens of acts throughout the day keep patients resilient – and when the time comes, eases their passing.”
You don’t have to be a neurosurgeon or a hospice nurse to know what a difference this care means to a patient – and to the family member who provides it. Susan Lamb in Biddesford, Maine is someone who was able to care for her grandmother in her final month of life. She summed up what many of us know: “I can tell you that a sad month was also very rich with moments of intimacy. You cannot put a price on peace, but I’d wager you that unresolved regret is very expensive.”
Anne Marie Pearson refers to HB 298l as “Joanne’s Law.” I’d like to rename it “Joanne and Anne Marie’s law.” Every one of us can imagine how important it must have been to Joanne to have Anne Marie provide the constant, intimate care required with a terminal illness.
We all can say thank you to Anne Marie Pearson. This legislative body can make Joanne’s death a little less painful and that thank you so much more meaningful by passing this bill.