Dec 18, 2024 | Advocacy, Community, Family, Federal Government, Grief, Research
Evermore is Making the World a More Livable Place for All Bereaved People
Fourteen years ago today, I was sitting on my couch, trying to make sense out of what just happened to our family. Our terminally ill daughter, Eleanora, had died a few weeks prior. While others sang holiday songs and gleefully exchanged gifts, it was a profoundly painful, dark, and isolating time for me.
Within a few short years, I quit my career because I saw tragedies saturating our national headlines, leaving a trail of unseen and unsupported bereaved people in their wake, and I believed our nation should prioritize the needs of all bereaved people. Today’s systems and culture kick us while we’re down, all the while telling us to bare-knuckle our way through grief. Then, when we’re feeling defeated and broken, we’re told to be resilient and get back to work. This is what I set out to change.
This year, more than any other, Evermore has made incredible strides in making the world a more livable place for all bereaved people. We grew our community portfolio to support grieving young adults in a Hip Hop program in the South Bronx, hosted poetry workshops with more than 400 people, and launched an initiative to secure bereavement leave for students in post-secondary educational institutions.
We’ve connected with our supporters more than 40,000 times through our newsletter, events, and advocacy. People shared photos of their loved ones and sent us treasured family recipes. Hundreds of us jammed at our very own rock concert with The Bright Light Social Hour and Parker Woodland in Austin, Texas (please come rock out with us next year!).
Evermore’s groundbreaking advocacy efforts resulted in our nation’s first Report to Congress, which provided an overview of grief and bereavement services in the United States. Next year, a report analyzing more than 8,000 scientific studies will be published, reviewing the highest quality interventions for bereaved people — which was championed by Evermore and endorsed by Congress.
SAMHSA, the nation’s mental health agency, recognized National Grief Awareness Week for the first time. It released its first webpage on the topic. It released its first webpage on grief and bereavement and hosted its first two webinars on the topic, where nearly 2,000 people registered for one webinar alone! We partnered with the Social Security Administration and The White House to advance systems that identify and engage parentally bereaved children and their caregivers to confer up to $15 billion in Social Security benefits that are not being conferred to orphaned children today.
Evermore, in partnership with Penn State and the University of California, has original research pending in an esteemed academic journal that identifies key bereavement trends for the first time. We launched a bi-weekly newsletter covering emerging science and trends in bereavement.
We partnered with Newsweek, spotlighting stories of bereaved parents and how they have coped in the aftermath of their child’s death. Our work was featured on PBS NewsHour’s Brief But Spectacular and Harvard’s Public Health magazine, among others.
It’s an incredible feeling to be a part of this. I am honored that you’ve joined me in believing that our nation can do better. What we set out to do is actually happening, and so many lives will be impacted.
Together, Evermore is changing the way our nation prioritizes and attends to grieving and bereaved people.
We already know 2025 will be another year of transformative change (you’ll have to tune in to see what’s around the corner; I’m excited about it).
But I want to be clear. None of this would be possible without your support. Evermore is solely supported by our people, people like you. It is because of your solidarity and support that we have achieved so much. Please consider making a donation this holiday season. Every gift brings us closer to a world where all bereaved people can live vibrant, healthy, and prosperous lives.
Thank you for your support, encouragement, and belief in our work. Together, we are making the world a more livable place for all bereaved people.
With gratitude,
Joyal Mulheron
Executive Director, Evermore
Nov 25, 2024 | Advocacy, Federal Government
Right now, the Social Security Administration (SSA) is soliciting public comments on the use and conversation of Social Security benefits and Supplemental Security Income (SSI) payments for foster children, including those who are orphaned. Your comments are important, and you can take action by re-submitting Evermore’s formal comments to the SSA, which recommends the federal agency focus on three priorities:
1) Address under-enrollment in both Social Security benefits and SSI, as only half of children receive the benefit,
2) Prioritize child survivorship programs and benefits as an SSA top priority and
3) Enhance state support by offering technical assistance, educational offerings, and related services to upskill community organizations, agency staff, and other key leaders in children’s lives on the importance of Social Security benefits and SSI.
According to experts, more than half of orphans in the United States (children who have experienced the death of one or both parents before their 18th birthday) are not receiving the Social Security benefits that they are eligible to receive. These benefits are often a result of hard-earned taxpayer dollars by a child/ren’s parents, who anticipated these benefits would be conferred to their child/ren upon death. If current trends hold true, then upwards to $15,000,000,000 is not being conferred to orphaned children annually.
Evermore believes it is incumbent that SSA prioritizes orphanhood benefits, find these children, and confer the benefits that are rightfully theirs, thus offering them a future as healthy and prosperous as their non-bereaved counterparts. Indeed, it is our moral obligation to do so.
By following the link below, you may re-submit Evermore’s comments and include your own story or rationale as to why this is an important concern. Every comment matters. Please submit your comments today. SSA will stop accepting comments on Monday, December 2, 2024.
Resources:
Read the federal solicitation here: Request for Information: Use and Conservation of Social Security Benefits and Supplemental Security Income (SSI) Payments That Representative Payees Receive for Beneficiaries Residing in Foster Care
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.
Jun 19, 2024 | Advocacy, Federal Government
Got Questions? National Call to Discuss the U.S. Government’s First Report on Grief & Bereavement
We’re Here to Answer Your Questions:
Join Us!
]In May, the Agency for Healthcare Research and Quality (AHRQ), a little-known government agency, released its draft report, “Interventions to Improve Care of Bereaved People.” This is the U.S. government’s first report on grief and bereavement, and AHRQ is accepting public comments until Friday, June 28, 2024.
- You can submit your comments via this link.
- Additional context for the report can be found here.
If you have questions, consider joining Evermore’s national call this Friday at 1 p.m. Eastern Time.
Reviewers found that “important gaps in our knowledge of various aspects of bereavement care” remain. This report is a first step toward advancing bereavement care for all bereaved people, but a lot more work needs to be done.
Your voice, questions, and concerns are important. Please consider submitting them today.
May 14, 2024 | Advocacy, Community, Grief
Advancing Bereavement Leave for All Students in Higher Education
Each year, over 4 million students in higher education
are socially and academically impacted by bereavement
Losing a loved one at any juncture can alter the course of a life; navigating grief is a fraught and difficult process in the best of times. But for students in higher education—from trade schools to elite universities—it can be particularly overwhelming and cause them to abandon their studies.
According to some experts, nearly a third of college students who lose a friend or loved one while enrolled in higher education will fail to obtain their degree.
Douglas with his family.
Beyond the emotional ramifications, failing to get a degree has lifelong effects, and many grief experts argue that institutions should offer students bereavement leave and grief support. Sydney Rains and Red Douglas were two students who would have benefited from bereavement leave and grief support: Both lost their fathers when they were undergraduates, and now they are working to ensure future generations of students receive the critical support they did not.
Collaborating with Evermore and members from public and private institutions from across the country, Rains and Douglas are leading Evermore’s Higher Education Leave Policy (HELP) campaign. Their goal is to bring awareness that students, from trade schools to universities, are being severely impacted by grief and more can be done to support them.
Rains with her father.
Rains was finishing up her junior year at Gonzaga University when her father died, and she struggled to complete assignments when she returned to school. Amidst her grief, she successfully led a student-specific bereavement policy campaign at Gonzaga, and she’s now working with the Evermore HELP campaign to advise colleges interested in implementing similar plans at their own institutions.
The HELP campaign was developed after Dr. Heather Servaty-Seib, who played a critical role in establishing the Grief Absence Policy for Students (GAPS) for students at Purdue University in 2011, connected Douglas with Evermore. He’s a Ph.D. candidate at Oakland University in Rochester, Michigan, studying ways higher education administrators can provide support for bereaved students, and said he was “frequently citing Servaty-Seib’s findings… so I reached out and she quickly replied, connecting me with Evermore,” Douglas said. Evermore “embraced my work and proposed the idea of developing a nexus for higher education professionals advocating for students on this topic.”
Douglas’ dad reading the sports page, which includes Red’s statistics.
One of the primary issues facing advocates and experts creating these policies is a straightforward data question. According to research conducted by various scholars over the past two decades, the prevalence of grief among higher education students is dramatically underestimated. Reports indicate that 20 to 35% of undergraduate students are within 12 months of losing a loved one; upwards of 40% are within two years of a significant loss.
Despite this reality, as of 2019 only 44 institutions of higher education in the United States had student-specific bereavement policies. Sevaty-Seib argues this is surprising when considering such policies exist at the K-12 level, and are also extended as workplace benefits to faculty, staff, and administrators at most colleges and universities.
Such policies address the risks that are specific to students in higher education, which boil down to these major factors:
Disruption of Academic Performance
The death of a loved one can significantly disrupt a college student’s academic performance. Grieving individuals may struggle to concentrate, meet deadlines, or attend classes regularly. Symptoms can manifest as lethargy, changes in appetite, insomnia, loss of interest in hobbies, and social isolation, all of which negatively impact grades and may result in dropping out. It’s essential for students to communicate with professors and academic advisors about their situation to explore possible accommodations and support systems.
Emotional Turmoil
Grief is a complex and intense emotional experience. Students mourning the loss of a loved one may feel overwhelmed by a range of emotions, including sadness, jealousy, anger, guilt, and confusion. These emotions can affect every aspect of their lives, from relationships with friends and family to their sense of self and purpose. Douglas said that felt “a strange jealousy toward my friends who still had both parents.” Seeking support from campus counseling services, support groups, or trusted individuals can provide a safe space to express and process these emotions.
Social Isolation
While research indicates social support is key, in the midst of grief, students often withdraw from social activities and isolate themselves from their peers. “When I lost my father, it was a very isolating experience,” Douglas said. “I never wanted to bring it up, so I had no idea how many other students were going through something similar.” Higher ed administrators can help grieving students by facilitating connections with their peers in similar situations.
Financial Stress
The death of a loved one can also bring financial burdens, such as funeral expenses, medical bills, or loss of financial support from parents. Students may find themselves grappling with these financial stressors on top of their grief, leading to heightened anxiety and uncertainty about their future. However, data on exactly how dire these situations become for grieving students is hard to find. Indiana University graduate and HELP contributor Malhar Pagay sought to find the number of bereaved students who dropped out due to financial stress, but discovered “the data is nearly impossible to find.” Colleges and universities are not keeping data on whether leaving is related to grief or bereavement. But if they did ask these questions, Pagay said, it would help them “make data-informed decisions about policies related to student grief and bereavement.”
Apr 17, 2024 | Advocacy, Federal Government
When someone close to us dies, we’re hardly in the right frame of mind to handle logistics and practical matters. Yet, often, this is the first thing we’re forced to confront.
There’s the matter of the deceased’s body and how it will be handled, but also funeral arrangements and ceremonial planning to honor the life of the person we’re grieving.
Funeral planning requires people to make multiple decisions while experiencing difficult and intense emotions. Making matters even more challenging, funeral arrangements are financially taxing.
In America, the funeral industry is essentially unavoidable after someone close to us dies. Because the funeral industry is ubiquitous and homogenous — offering the same services, same processes and procedures for after-death care — we rarely question it. But there’s a lot about the funeral industry you may not know.
Here are five facts about the funeral industry that will probably surprise you:
1. The funeral industry pulls in big dollars.
In the U.S., funeral homes are a $20 billion dollar annual industry. Most funeral homes are privately owned, and increasingly, more funeral homes are owned by large corporations.
Service Corporation International, the largest death-care corporation in the country, owns and operates more than 1,400 locations in North America and brought in more than $4 billion in revenue in 2023.
“Families are hurting. They are not only losing someone meaningful in their lives, their losses are compounded by the soaring costs in burials and cremations,” says Evermore founder Joyal Mulheron. “The funeral industry is well-funded, made only more profitable by our nation’s concurrent mortality epidemics — just look at their revenue statements.”
According to Statista, there are nearly 19,000 funeral homes in the U.S., yet there remains a surprising lack of competition in the industry. In the past several decades, larger funeral service companies, and in some cases, private equity firms, have bought up smaller, family-run businesses that were well-known and trusted in their communities.
The result has been a growing monopoly on the industry by fewer wealthy — and powerful — businesses. The industry’s consolidation was the central storyline for the 2023 hit The Burial, starring Tommy Lee Jones and Jamie Foxx and directed by Maggie Betts.
2. The funeral industry is poorly regulated.
The funeral industry is primarily regulated by the Funeral Rule. Introduced in 1984 by the Federal Trade Commission (FTC), the Funeral Rule was established to prevent vulnerable families from being exploited by licensed funeral homes after the FTC found widespread deceptive practices that limited consumers’ ability to make informed decisions. Today, if funeral homes violate the Rule, they may be subject to penalties of more than $51,000 per violation.
While this seems like a strong deterrent, the FTC granted the funeral industry a “sweetheart deal” more than 25 years, according to the Wall Street Journal (WSJ). When funeral homes are found to be in violation of the Funeral Rule, they can opt to participate in the Funeral Rule Offenders Program (FROP), a training program run by the National Funeral Directors Association (NFDA), which is the industry’s largest trade association and lobbying group. The offending funeral homes who enroll in the program become members of the association.
Essentially, the organization that lobbies lawmakers for fewer industry regulations is the same entity responsible for “policing” and penalizing offending businesses. NFDA conceals violations from American consumers and according to some experts, “it’s essentially a hush-money business.” However, the WSJ secured a list of 538 funeral homes that violated the Funeral Rule and publicly reported them earlier this year.
3. With no price transparency requirements for the funeral industry, consumers are highly vulnerable to overpaying.
In October 2022, the FTC revealed that more than 60 percent of funeral homes have little to no pricing information on their websites. This leaves consumers in a particularly vulnerable position.
“Imagine losing your child and then having to negotiate where their body goes and how much you’ll pay for it, all within hours,” says Mulheron. “When our own daughter was terminally ill, I called several funeral homes in hopes of identifying one where she could be taken once she died. Several told me they would ‘cut me a deal’ if she died soon. One facility, more than an hour away from our home, said, ‘We charge our flat rate for children of $400.’ We need more people like this leading the industry, not private equity brokers.”
Funeral costs for a single death event are significant, especially for families who struggle to cover the ongoing costs of housing, food, and medical care. According to a 2023 NFDA survey, the average cost of a funeral with a viewing and burial is nearly $8,300. A funeral with cremation costs only about $2,000 less.
These costs don’t take into account the costs of the cemetery, monument, marker, or other miscellaneous expenses, such as flowers. According to the Funeral Alliance Association, these added expenses often increase the total cost of full funeral services by $2,000 or $3,000.
4. Plan your funeral, but don’t prepay!
Following the WSJ’s release of the 538 funeral homes that violated federal law, a second WSJ article featured several stories of individuals who tried to act responsibly by paying for their own funerals in advance of dying. In some cases, their families ended up paying twice or more than the initial contracted amount. Whether it is lost paperwork, industry consolidation, “the fine print,” or something else entirely, it’s best to plan for the funeral but not pre-pay, then share your desires widely with family and friends.
5. Rather than regulate, your hard-working tax dollars are being used to reimburse funeral expenses.
In 2020, Congress passed a bill reimbursing some families for funeral expenses and only if they lost a loved one to COVID-19 (i.e., if your loved one died from overdose, homicide, or suicide, for example, you do not qualify for reimbursement). As of today, the Federal Emergency Management Agency (or FEMA), responsible for managing taxpayer reimbursement dollars for funeral expenses, has distributed $2.8 billion to 438,000 approved applications, with an average award of $6,400.
Fortunately, the federal government is beginning to act. The FTC has initiated a regulatory process indicating it will reissue the Funeral Rule. Evermore submitted comments to the FTC and is continuing to follow along. However, this process can take years and there is no indication on when the FTC might act. There is reason to believe that the industry will sue the FTC when it does act, further delaying price transparency.
It’s time for the funeral industry to join the digital age by sharing prices online. If we, as a nation, focus on closing down children’s lemonade stands for operating without permits, we can easily protect consumers from the funeral industry’s bad actors. After all, as Benjamin Franklin said, “nothing is certain except death and taxes.”
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We welcome readers to share their experiences working with funeral homes — positive or negative, confusing, frustrating, or supportive. If you have a story to share, email us at hello@stagingevermore.dbdodev.com.
