Mar 18, 2020 | Advocacy, Appropriations
For the first time in history, key federal health agencies will report what activities, if any, they are doing to advance bereavement care. Photo by Bob Bowie on Unsplash
As Congress shut its doors and fears of COVID-19 swept the nation, a small group of families and professionals worked tirelessly to advance our nation’s bereavement care system. We know that lack of high-quality, consistent bereavement care is an invisible public health crisis. It touches nearly every doorstep in America. In the wake of overdose deaths, suicides, and mass casualty events and now COVID-19, our nation’s response must consist of more than thoughts and prayers.
Bereaved families face declines in health and wellbeing, instability and solvency. Bereaved spouses, parents and siblings are all at risk of premature death as a result of their loss. Ten percent become disabled because of it; when a death is violent that number doubles, particularly after the death of a child. Two million children have lost a parent and only 45 percent access Social Security Income. Suicide among children ages 10–24 are up 76 percent since 2007.
The problem is more stark for minority families. Twenty-nine percent of black families report the death of a child, while 20 percent of Hispanic families and 17 percent of white families report the death of a child respectively. According to the Institute of Medicine, the death of a child is one of the most profound and enduring stresses a person can experience. Further, by age 20 black families are twice as likely to lose a child when compared to their white counterparts. By age 70 that number is nearly 3.5 times higher and by 80, it is more than quadrupled.
Bereavement and its implications on families are not part of our nation’s public health dialogue, or children and families or racial equity.
We can do better.
Bereavement care in America is broken. There are limited tools, few qualified professionals and even fewer protective policies. For nearly ten years, Congress has failed to protect to bereaved parents from being fired.
Late Wednesday, Rep. Lloyd Doggett’s (D-TX-35) office said he would lead the effort to direct key federal health agencies to report activities, if any, they are conducting to advance bereavement care. His commitment grew from listening to a mother whose 19-year old son, Ellis, was killed by a drunk driver. Our small team now had 48-hours to deliver five Congressional members to support the amendment — a tall order for a team with no lobbying firm, no established relationships and a global pandemic in our midst.
Fast and furiously we sent emails to Republican and Democratic members overnight. As offices opened, a mother who lost her 24-year old son, Alex, to addiction called Rep. Lisa Blunt Rochester (D-DE). When the receptionist said, “how can I help you today?” She replied, “I want to talk about my dead son.” She was patched to the chief of staff. We had our first signatory. Less than 32 hours left.
And so, it began. The CEO of Good Grief, a New Jersey nonprofit bereavement center serving 900 children and families monthly, recruited our second, Rep. Andy Kim (D-NJ-3). 28 hours left. Shortly thereafter, with the engagement of the president for the Association for Death Education and Counseling, Rep. Nita Lowey (D-NY-17), chairwoman of the House Appropriations Committee, supported the inclusion of the language. As did Rep. Rosa DeLauro (D-CT-3), chairwoman of the subcommittee on health appropriations, and other appropriators.
Then, the leader of a coalition supporting parents who have lost a child at any age, brought Rep. Jan Schakowsky (D-IL-9) on board. Minutes later, a mother contacted Rep. Peter Welch (VT-D) and talked about life after her 25-year son, Kevin, was killed by a train. Four down, one to go. 27 hours remaining. Four hours later, Rep. Deb Haaland (D-NM-1) joined, followed by Rep. Kathleen Rice (D-NY-4), Rep. Josh Gottheimer (D-NJ-5) and Rep. Danny Davis (D-IL-7). Eight signatures with eight hours remaining.
We had done it; at least in the House. For the first time in history, key federal health agencies will report what activities, if any, they are taking to stem declines in health and wellbeing among bereaved families, as well as what tools and resources are available to professionals.
On to the Senate. It remains to be seen who will lead the charge or if this issue will make any priority list. As of Friday, the Centers for Disease Control and Prevention estimate 200,000 to 1.7 million Americans could die from COVID-19, compounding an already stressed health system.
We believe that every member of Congress — and the Administration — should support every American’s access to quality, tailored bereavement care. Whether it’s the urban mother who loses her son to homicide or the rural family who loses their aging father to suicide. Where professionals have the tools, resources and research to respond, support and continue serving our nation’s bereaved families. It is not a partisan issue; this is an American issue.
Bereavement touches all of our doorsteps, regardless of geography, race, religion or wealth. As a modern society, families no longer have to slog through their losses alone. Imagine a tomorrow where individuals, families and communities have the resources, policies and programs in place to facilitate healthy coping, to get us back to work, to contribute back to society.
We are dedicated to making the world a more livable place for bereaved families. We hope you will join us because someday this will likely be your story too.
Mar 16, 2020 | FMLA, Appropriations
For too long, too many have considered bereavement as simply a mental health issue. When a family member or loved one dies, those grieving experience a deep sadness as their lives are changed fundamentally forever. Conventional wisdom tells us a bereaved individual or family will eventually “get over it,” “find closure” and “move on.” But, those commonly held myths are far from the truth.
Research continues to show that a loved one’s death isn’t something that we just “come to terms” with. Researchers tell us that bereavement grief makes us more prone to cognitive decline, disease and premature death. It can lead to financial loss. And it can tear families apart.
What’s more, federal policies and programs can compound the experience, further victimizing mourning Americans who need more than our thoughts, prayers and casseroles.
For example, of the two million bereaved children in the United States, Social Security Income is not reaching all children leaving those in need with lower levels of economic wellbeing and educational attainment. Or, for example, two fathers Barry Kluger and Kelly Farley have advocated for nearly a decade to protect newly bereaved parents from being fired from their jobs. Imagine losing your child, then your job.
Over the last three weeks, Evermore has been calling Congressional offices, meeting with staff and sending materials to dozens of staffers. And here’s the good news: Capitol Hill is listening, and lawmakers are beginning to understand that bereavement isn’t just a mental health issue, but an issue — and an American issue — that demands serious attention. The question is: will they act?
As deaths from suicide, overdoses and mass casualty events increase, members see how bereavement and the lack of a public health response is impacting their own communities. These discussions come as lawmakers consider appropriations bills and updates to the Family and Medical Leave Act, which currently does not provide time off for workers after a child’s death.
Here’s where Evermore is making big strides in bereavement care.
Appropriations committees address bereavement
In appropriations committees in both the House and Senate, spending bill proposals recommend that the U.S. Department of Health and Human Services seek information from its agencies about their bereavement care activities. Those agencies include the National Institutes of Health, the Centers for Disease Control and Prevention and the Substance Abuse and Mental Health Services Administration, for example.
According to the proposal, the agencies would be tasked with examining their own activities to advance bereavement care for families, including risk factors for survivors and whether policies and programs in place help or hinder coping and processing. Agencies would also be charged with documenting what resources they are providing to the professional community as well.
If approved, it would be the first time the agencies have studied how they address the bereaved and could pave the way for future spending bills that fund new efforts to support those who are grieving.
FMLA expansion could come
Congress hasn’t built upon the Family and Medical Leave Act since it was passed in 1993, and that’s led to many workers not having the right to take unpaid leave or unable to afford unpaid leave when it is available. For many grieving parents, in particular, the law doesn’t carve out an opportunity for them to take time off without fear of losing their job.
But that may be about to change. In February, the House Education and Labor Subcommittee on Workforce Protections held a hearing to talk about FMLA expansion, including bereavement care. In her opening remarks, Rep. Alma Adams, a Democrat from North Carolina, talked about the number of cases where the act does not cover workers who need to take leave, specifically calling out “family members taking time to grieve a child’s death.”
Research continues to show that the death of a child is one of the most severe and prolonged trauma that anyone can experience, which is why it is critical for Congress to recognize child death as an eligible event for FMLA job protection.
Evermore is having an impact here too. We submitted a statement for the record on the importance of including a child death as an eligible event for FMLA.
Our request is three-pronged.
- We want the U.S. Department of Labor to conduct a survey on bereavement leave for all employers with more than 50 employees.
- We’d like the FMLA to be expanded to include a child’s death as an eligible event, so parents have time to mourn.
- And we’re asking Congress to increase the age of a child to 26 in the law to make it parallel with the Affordable Care Act and tax law.
“As a modern society, we should no longer have to slog through death alone with few resources,” Mulheron said. “We can reimagine a tomorrow where people have the support they need in their own communities — whether urban or frontier America — and where professionals have robust supports, resources and benefits to move this work forward.”
Added Mulheron: “There’s still plenty of work to do, but this is a shared human experience, and people know that. We’re thrilled that offices are listening.”
