Nov 12, 2024 | Advocacy, Appropriations, Federal Government, Grief
With Evermore’s support and encouragement, Congress passed the Consolidated Appropriations Act of 2023, directing the U.S. Department of Health and Human Services to produce a report on the need for bereavement and grief services in the United States. Last week, just prior to the national election, the report was released to the public. To our knowledge, it is the first report by the U.S. and a direct result of Evermore’s leadership.
The report examined the scope of need for quality grief services, assessed the demand for such services, and provided a holistic evaluation of affected populations. This included identifying necessary interventions for specific groups, such as healthcare workers and other impacted demographics, and assessing the prevalence of conditions like post-traumatic stress disorder (PTSD) and complicated grief (CG). Additionally, the role of hospice programs in offering community bereavement support was underscored as essential to addressing these growing needs.
Findings from an environmental scan and interviews with experts, including researchers, advocates, and clinicians, reveal that grief responses are complex and vary widely. Approximately 10% of bereaved adults develop prolonged grief disorder (PGD) or CG, though contributors suggest these figures might be underestimated due to diagnostic complexities and overlapping mental health issues. PGD frequently co-occurs with PTSD, depression, and substance use disorder, posing challenges for treatment. Children, caregivers, veterans, and individuals who experience traumatic loss are among those most affected by PGD. Effective support services span from traditional therapy to music therapy, emphasizing trauma-informed care, while schools and mental health settings serve as critical sites for identifying those in need.
The report highlights hospice as a crucial service in promoting healthy bereavement by offering anticipatory support and post-loss coping mechanisms. However, concerns about access inequities and the shift toward for-profit hospice models were noted. Systemic factors like race and socioeconomic status also influence access to bereavement services, with disparities particularly prominent for communities of color. Although the COVID-19 pandemic has increased awareness around grief and reduced stigma, it has also amplified service demands, especially in underserved communities. Many contributors support a more comprehensive approach to grief that goes beyond medicalization, advocating for a nuanced understanding of grief’s social and cultural dimensions.
The report suggests that current bereavement services are fragmented and inequitable, with a need for a more comprehensive, less medicalized approach to grief support. Recommendations include enhancing healthcare systems, improving access to services, and addressing the inequities in bereavement support.
Resources:
Read the full Report to Congress: An Overview of Bereavement and Grief Services in the United States here.
May 12, 2023 | Advocacy, Appropriations, Federal Government, Grief
Open for comment until 11:59 p.m. Eastern Time on Friday June 2, 2023
One of the most hotly debated topics in bereavement care is whether all grief is normative or a diagnosable condition. For the first time, the federal government is beginning to examine scientific evidence on when grief is normative and when, if ever, does it limit daily life and function.
As part of the FY23 U.S. budget process, Congress passed a $1 million appropriation directing the Agency for Healthcare Research and Quality, a federal health agency, to conduct an evidence-based review of grief and bereavement literature to determine the feasibility of developing consensus-based standards for high-quality bereavement and grief care. AHRQ is accepting comments from the public on this issue until 11:59 p.m. Eastern Time, Friday, June 2, 2023. To learn more, visit AHRQ’s website and follow the directions on how to submit a comment.
Further, a technical panel of experts will be convened to help guide and inform federal efforts. Evermore has the distinct opportunity to nominate experts for the technical panel. If you are interested in being nominated, submit a nomination here (the nomination period has now closed). Nominations will be accepted until 12:00 p.m. Eastern Time, Friday, May 19, 2023. Submitting a nomination application does not ensure that Evermore will advance your application to federal leaders. In addition, if accepted, Evermore will not cover expenses related to your service as part of this effort.
As concurrent mortality epidemics touch every neighborhood in America, now, more than ever, our nation must invest in grief and bereavement leaders, programs, and science. This effort will advance our nation toward Evermore’s vision of a world where all bereaved people experience a healthy, prosperous, and equitable future. We are more committed than ever to serving bereaved children and families and the tireless frontline providers who have been on the frontier for decades.
Dec 20, 2022 | Advocacy, Appropriations, Community, Data Collection, Family, Federal Government, Grief, Research
In 2022, our community of supporters has grown by more than 50 percent for the second consecutive year. Our movement consists of people from every corner of America – from truck drivers to professors to homeschoolers and executives. We unite in solidarity to create a more compassionate world for those who will follow us. What do we do with the pain of loss? We create change.
We’ve done that in 2022, and we are on the cusp of much more. This year has been the most consequential yet in the advancement of bereavement policy, and we could not have made it this far without you. As we reflect on 2022 and look towards 2023, there are some bright spots we want to share with you:
- We are winning mindshare among our nation’s most esteemed federal health leaders. In an event hosted by the Centers for Disease Control & Prevention (CDC), our founder and executive director Joyal Mulheron, had the distinguished opportunity to provide a private briefing to key U.S. Department of Health & Human Services agencies on bereavement policy, research, and statistics. As an emerging social and health concern, it is imperative that government leaders understand the complexity of bereavement policy and its impact as it crafts and prioritizes its response.
- With Evermore’s support, Congress is directing the federal government to establish credentialing standards for grief therapists. Supporting bereaved people requires specialized training, which is not currently required for mental health practitioners. We are thrilled that Congress has directed federal health leaders to create universal eligibility standards to bring consistent and quality care to all grieving people.
- For the first time, Congress is encouraging CDC to collect bereavement data because of Evermore’s advocacy. Adding bereavement exposure to CDC data collection provides key demographic data and trends by race, geography, chronic disease risk factors, identity, and age, for example. A recurring data set of this magnitude will facilitate a better understanding of the scope of the problems connected to bereavement, and it will inform future policymaking and program priorities and investments.
- With Evermore’s support, Congress is directing federal health leaders to write the nation’s first report on grief and bereavement. COVID-19 and the nation’s concurrent mortality epidemics have impacted millions of Americans, yet grief and bereavement are not prioritized in our nation’s health policies, programs, or funding initiatives. This report will provide a holistic evaluation of the scope of the issue, the populations impacted, and the interventions offered to support grieving children and families.
- We are fighting for consumer rights, protections, and price transparency in the funeral industry. In almost every state in the nation, funeral homes are not required to publicly share their prices before a bereaved family walks through their doors, thereby leaving newly bereaved families vulnerable to price gouging and spending on services they don’t need or want. Evermore is preparing comments to submit to the Federal Trade Commission (FTC) on why funeral homes should be required to share pricing information publicly. This proposed amendment may substantially protect bereaved families during times of loss and crisis.
- Evermore releases America’s Forgotten Orphans, a free 58-page report, to bring childhood bereavement to the attention of federal lawmakers and agencies. In collaboration with Penn State and the University of Southern California, we identified a 22-year trend in increasing childhood bereavement across every state in the nation and among every racial and ethnic population. Childhood bereavement, and bereavement generally, have been a long-standing public health and social concern hiding in plain sight.
- Evermore releases free fact sheets and tools to calculate childhood bereavement in your own jurisdiction. We’ve developed 51 state fact sheets that help state and local lawmakers assess and better understand childhood bereavement in their jurisdictions. In addition, we’ve provided tools allowing local champions to calculate the prevalence of childhood bereavement in their school or Congressional districts.
- We are bringing the nation’s experts in grief and bereavement to you. This year we launched In the Know, a monthly video series featuring some of the nation’s experts in grief and bereavement, including luminaries like Megan Devine, one of our nation’s most respected grief leaders, and Dr. Toni Miles, who helped pioneer bereavement epidemiology.
- Evermore’s national grief directory continues to be a top resource for grieving children and families. Our comprehensive grief directory features more than 300 nonprofit resources across every state in the nation and continues to grow.
- Our weekly newsletter keeps our community connected, learning, and engaged. This year we launched a weekly newsletter to provide insights on bereavement science, policy, and community action. Our readership continues to grow as our stories and information aim to transform our nation’s systems toward supporting the lives of bereaved children and families.
We are not sitting on the sidelines and hoping change will come. We are actively working to advance these critical developments with respect and credibility each day. As we close out 2022, we want to thank you for making our work possible. Unlike other health and social concerns, bereavement policy and law are not funding priorities for any philanthropist or foundation we can find. Instead, people like you solely fund our movement.
We will continue our work building a healthy, prosperous, and equitable future for all bereaved people in 2023. If you would like to support our work in the coming year, you can make a donation here.
We wish you and yours a warm, healthy, and restorative 2023!
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.”
