Jul 28, 2023 | Advocacy, Federal Government, Parent, Research
The scale and reach of the Maternal and Child Health (MCH) Block Grant—with current appropriations of $712,700,000—is indisputable, as 93 percent of pregnant women, 98 percent of infants, and 60 percent of children are touched. While impressive progress has been made in important benchmarks, including the 25 percent decline in infant mortality since 1997, bereavement remains absent from the MCH Block Grant scope. This omission is notable as the agency’s technical advisement manual to state programs mentions death more than 150 times and supports fetal and child death review panels throughout the United States; however, attending to bereavement or grief in the aftermath of these deaths is not included even once in the Health Resources and Services Administration’s (HRSA) guidance.
Bereavement—the loss of a significant relationship by death—is one of the most traumatic stressors a person endures, and extensive scientific evidence domestically and internationally points to the significant, enduring, and life-altering impacts bereavement has on grieving individuals in the short- and long-term. Similar to the MCH Block Grant program, the scale and reach of bereavement in the United States is extensive, particularly as concurrent mortality epidemics—COVID-19, overdose, suicide, homicide, maternal mortality, traffic fatalities, and the emergence of more extreme and deadly climate events—has left no neighborhood untouched.
Read more: Evermore Letter to HRSA
Jun 29, 2023 | Advocacy, Community, Family, Grief, Research
By Terri Schexnayder
Five new releases have landed in bookstores and audible programs recently. Each one delivers the topics of grief and loss through unflinching honesty with the author’s personal story—some even include moments of humor. We encourage you to read and share with bereaved family and friends these selected books.
Dina Gachman’s self-help book, So Sorry for Your Loss: How I Learned to Live with Grief and Other Grave Concerns, was released on April 11, 2023. Since losing her mother to cancer in 2018 and her sister to alcoholism less than three years later, the author and journalist has dedicated herself to understanding what it means to grieve, healing after loss, and the ways we stay connected to those we miss. Publisher’s Weekly called Gachman’s book “a poignant, personal exploration of grief.”
Regarding her esteem for Joyal Mulheron and the nonprofit she founded, Evermore, Gachman said, “after going through a traumatic in-home hospice experience with my mom, I was so happy to discover Evermore, and find out that there are people out there trying to reform bereavement care in the U.S. Until I went through it, I had no clue how emotionally, physically, and spiritually depleting and devastating it could be. I was so moved by Joyal’s story, and by the stories of others I spoke to for the book. So many of us out there are suffering through caregiving or the loss of a loved one, with little help, and Evermore’s mission is one I fully embrace. We need more help and more understanding around death, grief, and loss at home, at work, and as a society.”
In an excerpt from Gachman’s chapter about hospice, the reader learns more about Joyal Mulheron’s own struggles with the system after the loss of her infant daughter Eleanora:
Bereavement care in America is broken, if it even exists, says Joyal Mulheron, founder of Evermore, a nonprofit focused on improving the lives of bereaved families through research, policy, and education. … She saw firsthand how “broken” the system was when insurance companies would call her during her daughter’s pediatric in-home hospice and ask how many days or weeks it would be until her daughter passed away. Mulheron said she had twenty-three providers, but she was the one doing the caloric calculations, making sure her daughter was getting enough nutrition to keep her comfortable. … During that time, the company she worked for asked for her resignation, since she was caring for her daughter and could not devote herself to the job as she once had. Now, she is working to change those systems that were so broken for her, and for so many others.
After avoiding her grief from the loss of her father to bone cancer when Laurel Braitman was a child, the New York Times bestselling author eventually faced—and embraced—her pain in her thirties. What Looks Like Bravery: An Epic Journey Through Loss to Love, released by Simon & Schuster on March 14, 2023, is referred to as the “hero’s journey for our times.”
Her literal journey through mountainous regions, encountering life-threatening wildfires, and visiting with others about their grief along the way, Braitman’s powerful memoir “teaches us that hope is a form of courage, one that can work as an all- purpose key to the locked doors of your dreams.”
She shared how she, like so many of the children she met with, felt shame after their loss. “I became a facilitator to help grieving kids who lost siblings or who were ill … What I learned from them was that shame is really just another way to control the uncontrollable.”
Released on April 4, 2023, A Living Remedy: A Memoir by Nicole Chung, a Korean-American writer who was adopted by white parents is personal and addresses an important topic. Chung not only writes about the loss of both her father and mother to illness within the span of a few years but tackles the issues of class and the inequities of medical care in the United States. She witnessed this firsthand, especially when her father was dying, noting his death was “no doubt exacerbated by his lack of health insurance and limited access to care in the small Oregon town” where Chung grew up.
Chung shared an interview with LitHub journalist Hannah Bae. “I felt compelled to write about grief but also this common American experience, where so many people in this country who are not fantastically wealthy end up facing illness or loss without all the resources and support that we need.”
On Grief: Love, Loss, Memory by Jennifer Senior, released on April 4, 2023, is based on an intriguing story around the journal of a young man Bob who died on 9/11 at the World Trade Center. Atlantic writer Senior interviewed Bob’s parents after his death. Years later, she shared with NPR’s Rachel Martin her desire to find the truth behind why the journal ended up with Bob’s fiancé Jen rather than his mother. “[His mother] was so upset and said, ‘How can you give away the last thing our son ever wrote?’ It was – it is a chance to have – to hear his voice one more time, to, in a weird way, be in conversation with him …”
The nagging question for Senior became, why didn’t Jen give the journal back when Bob’s mother asked for it? On Grief answers that and provides a larger conversation about the book’s title.
The Archaeology of Loss: Life, Love and the Art of Dying by Sarah Tarlow, released on April 20, 2023, shares the archaeologist’s shock and grief when faced with the sudden loss of her husband Mark. Called “a fiercely honest and unique memoir,” it reveals how nothing could have prepared Tarlow, after years of studying death in her research, for the loss of someone she loved. About writing her memoir, Tarlow said:
“When you find your husband lying dead, you think you will not forget a single detail of that moment. As an archaeologist, I like to get my facts right … I am excavating my own unreliable memory. I cannot go back and check.”
Resources:
So Sorry for Your Loss: How I Learned to Live with Grief and Other Grave Concerns
What Looks Like Bravery: An Epic Journey Through Loss to Love
A Living Remedy: A Memoir
On Grief: Love, Loss, Memory
The Archaeology of Loss: Life, Love and the Art of Dying
Time: How to Connect with Loved Ones After They Die
The Guardian: The Archaeology of Loss
WNYC Memoir About Avoiding Grief
NPR: Grief Book Has Its Roots in the Long-Lost Diaries of a 9/11 Victim
LitHub Nicole Chung on Writing Through Grief and How to Begin Again
Jun 29, 2023 | Advocacy, Community, Family, Grief
By Jena Kirkpatrick
Jason Edwards grew up in the small town of Graham in West Texas where being gay was not accepted. Pegged as the class ‘gay boy,’ he was bullied relentlessly. His dad tried to spark his interest in sports and Edwards recalled being out on the field spinning around like Wonder Woman. “I was always different,” he said. On June 7, 2000, Edwards’ sister, Bella, was killed in an automobile accident. “It was like a part of me had been cut off—and I was just bleeding,” he said.
Edwards and Bella were queer siblings. They had an inseparable relationship, supporting each other throughout their lives. “I knew if she was a part of my life, I would always be OK. And then, I was not. I was not OK at all,” he shared. Edwards described the physical feeling of his sister’s loss as if his life source had been pulled out of his chest and replaced with an uncontrollable shake. He stopped writing for years, stopped calling his friends and became a recluse. Eventually, he ended up moving to start his life over because he could not handle the memories.
“There was no help for me,” said Edwards. He found his anger and sadness to be something unlike anything he had ever experienced in his life. The Psychological Bulletin reported in November of 2011, “Experiencing the death of a loved one during childhood or adolescence has long term effects on biopsychosocial pathways affecting health.” Navigating this loss was compounded by his schizophrenia. Edwards said he is not ashamed of his condition, but when a schizophrenic experiences a trauma, they need extra help. “It is ridiculous, it is awful. Public healthcare is a joke—you sometimes wait eight hours to see a doctor for fifteen minutes,” he said.
Edwards believes it is a human right to have grief counseling and healthcare. He continues to deal with complex trauma, experiencing a heart attack and multiple heart issues in the last few years. The Journal of the American Medical Association noted, “Sibling death in childhood is associated with a seventy-one percent increased all-cause mortality risk among bereaved persons.”
Edwards now lives in Austin, Texas, with his husband Matt. In June of 2015, same sex marriage was declared legal in all fifty states. They were engaged that month and married in August of 2016. “We felt that we deserved the same right to be legally married as anyone else did,” said Edwards. This Pride Month has been about spotlighting our queer brothers and sisters and continuing to highlight the societal shifts occurring in our country.
However, on June 22, 2022, the Texas GOP adopted an anti-LGBTQ platform declaring that being gay was ‘abnormal’, which opposes all efforts to validate transgender identity. This year, Texas lawmakers passed bills banning puberty blockers and hormone therapy for transgender kids and restricting the college sports teams that trans athletes can join. Edwards remains optimistic. “When I am at work, I see parents come in with t-shirts that say, ‘Protect Trans Kids.’ The world is changing, and I think we are winning. It is just an uphill battle.” The fight for bereavement care is an uphill battle as well. Being bereaved with no care only compounds the pain of marginalization.
And there are still so many people who do not understand what it is like to be marginalized. If we all woke up tomorrow and the world was different, men were supposed to be with men and women with women, maybe then people would understand how alienating it feels being the minority. Then people might understand how natural it feels to be with the one you love. Oscar-nominated actor Elliot Page said, “This world would be a whole lot better if we just made an effort to be less horrible to one another.”
Edwards remains optimistic and hopeful that our future has no prejudices, a world where understanding and acceptance replaces hate. He tries to fill his days with beauty, love, friends, art, poetry, music, and good food. “We are all rushing towards death. We just need connection,” he said. “What would happen if we all put our differences aside? We could make real change. If we take the time, we can find something in common with everyone.”
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.
Apr 5, 2023 | Family, Federal Government, FMLA, Grief
By Prerna Shah
When a loved one dies, many family members seek bereavement leave to attend to family affairs, their grief, and sort through the many changes that invisibly unfold behind closed doors. It may be surprising to learn that most employees have no legal right to take leave, except in five states in America (learn more about state bereavement laws here).
The Family Medical Leave Act, also known as FMLA, provides job and benefits protection for 56 percent of the United States workforce; however, bereavement is not an eligible condition for job or wage protection. Many may be surprised to learn that newly bereaved families have no legal right to take leave to cope with the death of a loved one.
So, what is a newly bereaved family member to do?
In honor of National Employee Benefits Day, Evermore sat down with Jeff Nowak, an FMLA expert, who provides legal strategies and solutions for employers of all sizes across the globe, for an in-depth conversation on all aspects of FMLA.
1) What is the FMLA?
FMLA is a federal law that provides up to 12 weeks of leave to an eligible employee in a 12-month period. There are a number of reasons why you may be eligible for FMLA job protection, including
- An employee’s own serious health condition,
- the employee has to care for a family member with a serious health condition, or
- due to pregnancy,
- bonding time after childbirth or adoption, or placement into foster care, and
- a qualifying need due to the active duty of a spouse, child, or parent.
While FMLA generally covers all public-sector employers, it also extends coverage to private employers that have 50 or more employees in a 75-mile radius. In general, to be eligible, an employee must have worked for at least 1,250 hours over the previous 12 months.
2) Does FMLA offer bereavement leave?
No, generally, FMLA does not specifically provide bereavement leave; however, Department of Labor statements and legislative history indicate a miscarriage is classified as a “serious health condition.” As a result, both miscarriage and stillbirth — two conditions before independent life begins — should be eligible for FMLA bereavement leave if the birthing person is unable to work because of her own “serious health condition” (e.g., physical recovery from miscarriage and/or labor and delivery, emotional distress). Paternal coverage may be extended if the spouse is caring for a loved one with a serious health condition.
For most bereaved families, however, bereavement is not an eligible event for FMLA job or wage protection.
Novak shares, “Oftentimes, employers have their own bereavement leave policies. Generally, these policies cover one to three days of bereavement leave, but that is not enough for most people. FMLA can be invoked to cover bereavement leave if the employee has a serious health condition like depression or anxiety, but you would need to invoke the ‘serious health condition.’”
3) How can you best communicate with your employer after a loss?
Communication is key.
According to Novak, “It’s so critical that the employee simply communicates upfront. Be candid with your employer. I’m hurting right now. This is a really difficult time for me, I can’t keep my attention on my work when I’m dealing with this loss in my life.”
“Some of us are fearful of that, right? We’re fearful of what the employer may do. We are in fear of losing our job as a result. But it’s important to characterize what you’re dealing with; if you need to start using words like, “My mental health is at issue here, or I just need to leave for my own mental health.” I tell employers that that line alone triggers an FMLA obligation. Now we potentially are in an FMLA-protected situation.”
Novak suggests that it’s beneficial to involve the HR team: “It’s important to be in full communication with the HR team. Look at your FMLA policy and find out, who does your employer want you to communicate with?”
Candid and open communication with the employer can make a difference; however, only share what you feel comfortable with. When the employer understands that coping is inducing mental distress, that’s when FMLA may be triggered, and this affords the employee job-protected leave.
4) What compensation is offered through the FMLA?
Leave associated with FMLA is unpaid.
When someone close to us dies, families often incur unexpected costs like funeral expenses, moving property or estate titles, among others. Novak shares, “By its very nature, federal FMLA is unpaid. And that remains (so) today. And I would say for the foreseeable future, federal FMLA is going to be unpaid.”
Nowak adds, “As a result of Congress being unable or unwilling to pass a paid leave law at the federal level, we’ve seen quite a bit of growth at the state and local level when it comes to paid FMLA leave.”
If you are able to take bereavement leave, it’s important to keep in mind that employers have no legal obligation to pay the employer during their leave.
Nowak notes that while a handful of states have passed their own FMLA laws, others have passed paid FMLA laws and others have provisions for paid sick leave (learn more about state bereavement laws here).
Nowak says, “It’s likely that we may see a paid leave law that involves contributions from either the employer or the employee or both sharing (contributions) that provide the funding for paid leave.”
5) Where can I find out more information?
For more in-depth coverage of our session with Jeff Nowak, you can head to our YouTube channel, and don’t forget to subscribe while you are checking our videos. We regularly update our channel with resources from experts working in the area of grief and bereavement, and our ‘In the Know’ sessions are very popular and informative.
On our website, you will also find many relevant and expert-led resources on FMLA – miscarriage and stillbirth, state laws and legislation related to bereavement leave, U.S. military bereavement leave guidance, general information on grief, how community leaders can help, our national grief support directory, books on grief for adults and children, our most recent achievements in advancing in bereavement care, and more.
Please also help spread the word about FMLA and bereavement leave, have these conversations with your colleagues and coworkers on this National Employee Benefits Day.
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!
