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.