When it comes to supporting our nation’s military caregivers – the family members and friends caring for a wounded, ill, or injured veteran each day in their homes – the Elizabeth Dole Foundation is a true leader. The foundation aims to raise awareness, conduct research, and support military family caregivers. Among that group, you will find children, teens, and young adults impacted by or directly involved in the mental, emotional, or physical care of a wounded, ill, or aging service member or veteran. They are known as Hidden Helpers.
In the first of two episodes, Steve Schwab, CEO, Elizabeth Dole Foundation, and Larry Moss, MD, President and CEO, Nemours Children’s Health, discuss Hidden Helpers: who they are, who they help, and the commitment to educating physicians across the nation about these hidden heroes’ unique medical and psychological needs.
Guests:
Steve Schwab, CEO, Elizabeth Dole Foundation
R. Lawrence “Larry” Moss, MD, FACS, FAAP, President and CEO, Nemours Children’s Health
Take the FREE online course “Caring for Children and Teens in Military Families.”
Host/Producer: Carol Vassar
EPISODE 70 TRANSCRIPT
Carol Vassar, podcast host/producer:
Welcome to Well Beyond Medicine: The Nemours Children’s Health Podcast. Each week, we’ll explore anything, and everything related to the 80% of child health impacts that occur outside the doctor’s office. I’m your host, Carol Vassar. And now that you are here, let’s go.
Music:
Well Beyond Medicine!
Carol Vassar, podcast host/producer:
When it comes to supporting our nation’s military caregivers, the family members and friends caring for a wounded, ill, or injured veteran each day in their homes, the Elizabeth Dole Foundation is a true leader established in 2012 by former two-time Cabinet Secretary, American Red Cross President, and US Senator Elizabeth Dole herself, a military family caregiver to her husband, the late Senator Robert Dole. The foundation aims to raise awareness, conduct research, and provide support for military family caregivers.
Among that group, you’ll find children, teens, and young adults impacted by or directly involved in the mental, emotional, or physical care of a wounded, ill, or aging service member or veteran. They are known as hidden helpers. This is a two-part episode in which we’ll hear the firsthand stories of a hidden helper and a military caregiving spouse raising a hidden helper on how this mostly unpaid, untrained, and unexpected sacrifice has directly impacted their day-to-day lives and even their life trajectories.
First, though, let’s learn a bit more about hidden helpers, who they are, what they need, and the coalition that’s working to fill the gaps in their support and care. Joining us to talk about all of this is Stephen Schwab, CEO of the Elizabeth Dole Foundation, and Dr. Larry Moss, president and CEO of Nemours Children’s Health, which is committed to educating physicians across the nation about hidden helpers. So what are those needs, and what was the impetus for creating the Hidden Helpers Coalition? Here’s Stephen Schwab.
Steve Schwab, CEO, The Elizabeth Dole Foundation:
As you mentioned, EDF was founded in 2012, and our mission began grounded in evidence-based research. If you know anything about Senator Elizabeth Dole, she has had a prolific 45-plus year public service record, and every major societal crisis that she has taken on, she’s done so with evidence-based research, and we commissioned a two-year study that we unveiled in 2014 at the White House with then-President Obama, Vice President Biden, who obviously later became president and Dr. Biden, the current First Lady, then Second Lady, and it told America that there was a crisis happening in homes all across the country, five and a half million families, where essentially the war had come home, wounded warriors in the millions suffering from lifelong wounds. And our country really didn’t acknowledge that this crisis was happening in homes across America. And so we built, as we do at EDF, commonly, a massive coalition to take on the gaps in services and needs that were identified in that study.
And shortly after, as a result of what we learned, we went back to RAND, and we said, “What else do we need to know on the impacts of these families long-term?” And so we did a research blueprint, and that blueprint told us that we didn’t know anything. There was no evidence-based research on the impact of caregiving, this long line of caregiving on children inside these military families. And so we commissioned another great research institution, Mathematica. We did a groundbreaking study. We unveiled it at the Biden White House about a year and a half ago with First Lady Dr. Biden by her side as she’s taken on this mission full throttle. And we said to America, there are roughly 2.3 million kids in homes across the country who are serving as primary and secondary caregivers to mom and dad. Carol, these are kids as young as 4, 5, 6 years old, 18, 19, 20, who are performing duties, many of them well beyond their psychological, mental, and emotional capabilities, administering medications, helping provide primary and secondary care to mom and dad who might have a physical or mental or emotional brain injury.
This is a new normal for America as veterans who are wounded and have traumatic brain injuries and long-term mental and emotional illnesses, wounds and injuries face decades if not a lifetime of caregiving needs. It’s the new normal in America that not just spouses and parents have caregiving duties, but children are inheriting these caregiving duties. When I was a kid or five and six years old, I just worried about when the streetlights turned on. I needed to come home and have dinner. We’re talking about kids who live on the line of anxiety and burnout, and depression. They’re not understood by their peers. They don’t have a typical interaction in school, and a lot of that leads to a stigma and a nervousness on their part to seek out the care and support that they need or to acknowledge to their friends and loved ones that their situation is a little different than Johnny’s around the corner, which is why we’re so excited to partner with one of our nation’s finest children’s health institution, the Nemours, to really face this issue head-on.
Carol Vassar, podcast host/producer:
How does this fit in with the mission and vision of the Elizabeth Dole Foundation overall?
Steve Schwab, CEO, The Elizabeth Dole Foundation:
Carol, it fits square in the middle of what we said we were going to do when we stood with the Obamas and a bipartisan group of leaders in the White House in 2014. But we said we were going to wake up in America and address all the gaps in services and support that military families are facing in homes across America. And that didn’t just mean caring for those who were caring for our wounded warriors, it meant stepping back and appreciating the holistic healthcare situation, the holistic support situation that was happening to American families.
Carol, I’ll take you back a couple of years. We’re not in the throes of a war in Iraq and Afghanistan today like we were 10 years ago. But what most people don’t understand is that that war is still being waged in countless homes across America as veterans who fought continue to battle with the wounds that they’re facing at home. I was at a funeral last week for a veteran who died by suicide from the Iraq and Afghanistan conflicts; not able to forget what he saw and who he lost, and the feelings of guilt that obviously overtook him, sadly. And he had three hidden helpers who are now without their father. And these are the stories that are happening in homes all across America.
So our mission is to work with incredible partners like Nemours and other institutions across the country to acknowledge that this is the new normal, to create training and education and support systems that help the veterans and the spouses and the parents, but also the children’s and the families and the communities all around these folks so that we can create that holistic web of support in the home, in the clinical setting at their place of employment. That’s our mission at EDF, is to ensure that those levels of support transcend the family, the community, and the systems of care.
Carol Vassar, podcast host/producer:
Well, Steve, let me just say I’m very sorry for your loss. And it sounds like these hidden helpers did the very, very best that they could and deserve support. All hidden helpers certainly deserve the support that is now on the radar of both Nemours and EDF. What led to the live event at the White House that you talked about about a year and a half ago?
Steve Schwab, CEO, The Elizabeth Dole Foundation:
Well, we have been blessed in our work really since the beginning to have a mission that is non-partisan, that is equal parts blue and red, and down the middle that every American, wherever you sit, wherever you live, whoever you are, wants to get involved in. And so when we produce a study that says there’s roughly two and a half million kids across the country who desperately need our support, people come running to help like Nemours did. Nemours isn’t even on the sidelines. They’re in the center of doing this work every day. And so the partnership that we are talking about today was natural.
And so when we went back to the White House and the administration and Republicans and Democrats in Congress and said we’ve got a study that says there’s another crisis facing a new generation of caregivers, the White House said, “Well, come in. Let’s roll out that research on the biggest, arguably the biggest platform in the country and EDF, depending on its history and our DNA of building multidimensional coalitions, because we believe in collective impact; we believe that coalition building is the best way to attack systemic, widespread systemic issues. We invited leading partners like Nemours to help us bring more organizations, and we’re now 150-plus strong. I think it’s actually around 180-plus organizations who joined Nemours and us in building a network of support that spans this country.
And we hope and we expect that we’re going to be continuing to roll out incredible new levels of support like we are in the work that we’ve done with Nemours. So, the live event at the White House became an opportunity for us to say to America, “Wake up and do your part, follow the lead of organizations like Nemours who stood up,” and said, “It’s our responsibility as a nation to come to the side of these children and their families.”
Carol Vassar, podcast host/producer:
And at that event at the White House, you announced some public and very formal commitments by coalition members in support of the goals of the coalition. Talk about the strategy of challenging coalition members to make those formal commitments. What was the vision? What was the goal?
Steve Schwab, CEO, The Elizabeth Dole Foundation:
Well, Carol, that’s a great question. I’ll tell you, having the White House involved doesn’t hurt when you’re trying to leverage folks beyond the obvious reasons why this mission makes sense and why these kids need support. We were able to announce close to 50 commitments, including the incredible commitment that Nemours made and that we’ve now launched, and that’s similar to what we did when we rolled out our first RAND study in 2014. I think that it’s really important, and Senator Dole talks about this all the time.
You don’t commission and produce research for it to sit on a shelf. You produce research to lead to an end, to motivate and inspire organizations and individuals to take action, and what can inspire individuals and organizations to take action more than millions of children who desperately need our support right now? And so we announced 50-plus commitments with, by the way, our lead partner on this effort, the Wounded Warrior Project, who’s been with us since the very beginning and stood with us at the White House and announced a million-plus dollars in grants that have been invested in programs that are now have been stood up and are directly impacting these hidden helpers every single day. Thousands of them are in new programs and support that the Wounded Warrior Project has enabled.
And so by having institutions like Nemours stand up at the White House, we’ve led others to be inspired to make commitments beyond that event itself. So we’ve got organizations who are still stepping up today, and Carol and Dr. Moss, I think will inspire more by virtue of this podcast and getting more folks interested. The last thing I’ll say, Carol, is the best coalitions that I’ve been involved in are coalitions who keep the drum beat alive, which means you go beyond that big catalytic event like we had a couple of years ago in the White House, and you organize a dynamic coalition with leadership across, like Lynn Morris is leading our clinical health, leading our clinical efforts. You put experts in charge of groups that come together to take action, and they inspire one another to keep going. And that’s what we’re seeing in this coalition. We’ve got a long way to go, and we look forward to continuing to work with Nemours and other partners to just continue to wrap these kids in the support that they need long term.
Carol Vassar, podcast host/producer:
Dr. Moss, I’m hearing Nemours is a huge part of this coalition. Nemours was the first pediatric health system to join the Hidden Helpers Coalition. Why did Nemours Children’s Health opt to join, and how does that commitment link to Nemours’s vision and mission overall?
Dr. Larry Moss, President & CEO, Nemours Children’s Health:
Thanks for asking. And boy, Steve, that’s a tough act to follow. Steve does an absolutely spectacular job of bringing to life and really vividly articulating what these kids are going through. At Nemours, we have the opportunity to partner with many wonderful organizations, but this one is really special. And this one really strikes to the heart of who we are and what we care about. When I think of the roughly 9,500 we have that work at Nemours and are part of our mission to create health in children, perhaps our most important for value in this organization is service. And what better exemplifies service than what the women in our military do in this country? So to be able to be part of something, to be of service back to those people is a real privilege for us.
A little bit about Nemours. We are the country’s only multi-state, multi-hospital and health system. We care for roughly two million kids a year in six states up and down the East Coast of the United States. And I like to say that Nemours is in the business of creating health, not just treating disease. And perhaps a way to shine a light on that is to say that on any given day in this country, about four one hundredths of 1% of kids in this country are in the hospital, which means that 99.96% of kids are not. And we care just as much about the health of those kids as the kids that we take care of in our hospitals.
And when I think about that and put in context the hidden helpers that Steve describes, those kids are not in the hospital, but unless we provide them what they need, they will be, and they will be as children, or perhaps they will be as adults if we don’t provide the environment for them to grow up without stress and without all the things that can lead to poor health for a lifetime. So this is a fantastic opportunity. I would say that Nemours is an expert in the health of children, but the Elizabeth Dole Foundation is an expert in all issues related to veterans, their needs, and their family’s needs. So it’s really a match made in heaven to be able to do this and to have an impact on those families.
Carol Vassar, podcast host/producer:
And from what Steve mentioned, it sounds like Nemours is taking a clinical lead here. What was the commitment that Nemours made as a member of the Hidden Helpers Coalition?
Dr. Larry Moss, President & CEO, Nemours Children’s Health:
Well, we committed some dollars, but that’s not the real commitment. The commitment really was to use our resources, which are fundamentally the knowledge, the skill, the expertise, and the compassion of our outstanding clinicians, to create this training program. And we’ve had physicians, psychologists, patient care support staff, really all of our team come together around the creation of these training videos, which are available for free to all clinicians in the country.
If I were working back to my experience as a medical student in San Diego at the University of California San Diego, I did a fair amount of my trading at Balboa Naval Hospital there. And man, if I would’ve something like this, I really could have done a better job. And I reflect on what a limited perspective I had as a medical student. And when I interface with military families on a regular basis, there was so much more I wish I had known, and there was so much more I wish I had been taught. And I took this course, I just took it a few days ago, and that was a top of mine the whole time I was going through, it was, “Wow, I wish I would’ve had that.” And now, it’s available for medical students, for practicing physicians, for nursing students, practicing nurses, and everybody in the healthcare spectrum. And it’s an opportunity to make us all better and to do better by these children.
Carol Vassar, podcast host/producer:
I took the course, too, a couple of days ago. I’m not a physician or a healthcare provider, but I did learn a lot. But I’m curious, Dr. Moss, what aspects of the course resonated most with you as a physician, as a pediatric surgeon by training?
Dr. Larry Moss, President & CEO, Nemours Children’s Health:
Well, I mean, overwhelmingly, it was the portions of the course where we heard directly from the kids and the spouses of these disabled veterans. I mean, that was incredibly powerful, and that trumps everything that a clinician can teach you. And so the combination of having the family perspectives and then you hear from the experts, and you’re able to put all that together, it really gives the course powerful credibility.
Carol Vassar, podcast host/producer:
Steve, the Hidden Helpers Coalition: it’s been around for about two years at this point. As you reflect on the member’s work to date, including Nemours, what do you see as bright spots within the healthcare sector and its ability to support military-connected children and families, and what would you like to build on?
Steve Schwab, CEO, The Elizabeth Dole Foundation:
Well, Carol, the brightest spot of our work, undoubtedly, is the work that we are talking about today. I want to step back and point out something about this particular commitment that is really important and that Nemours didn’t make a commitment just to train its own thousands of folks. It made a commitment to train and educate American clinicians. And so the experts at Nemours, who are absolutely incredible, and I met so many of them in the course of this passionate, knowledgeable, committed men and women, knew that we were creating a training that was going to benefit clinicians all across the country.
And so this bright spot, this model is based on a training system that we built at VA called The Campaign for Inclusive Care, which works with clinicians across the VA system, the largest in the country, to promote this concept of inclusive care, which in some ways, Dr. Moss was just getting at, because clinicians rely on important relationships with family members who surround their patients. And when we engage family members in the administration and the follow-up of the treatment of the patient, we see great results. We see adherence rare levels of adherence to follow-up. We see medication usage and specialization follow-up increase. We see costs go down for systems of care. So we expect we’re going to see the same kinds of results from the training that we’re putting forward with Nemours. We’re certainly going to educate providers on how to support these kids, but we’re going to benefit the families and the systems that these folks sit inside of, and we’re going to learn what more we can do in the future.
Another really growing area of need that we’re excited about is around education support. We’re working with a group called the Military Child Education Coalition to understand how we can train administrators and teachers in the same ways about how you can become knowledgeable about the needs of hidden helpers. Some kids who are inside military families get tagged as behavioral issues in school. When teachers are unaware that these children are having the kinds of challenges they are at home, they’re not acting out for acting out sake. They’re probably revealing through subtle behavioral aspects that their situation at home is a challenge. And right now, we’re not actively educating teachers and administrators in schools the ways that we are now with clinicians through the training that we’re doing with Nemours, and so we’re really excited about that.
We’re also working on a screening tool with a wonderful clinician to help us and hopefully pilot screening tools and clinical institutions on how we can tag kids who are hidden helpers, how we can integrate screening tools into electronic health records, how we can ensure that when families come into a clinical setting, there’s a way to acknowledge that they’re a military family or a military child or a military caregiver. All of this is to empower clinicians at great organizations like Nemours or educators and schools across the country, or clinicians at the VA or other civilian institutions to both be aware of what’s happening in military-connected families but also to empower them to support them even more effectively.
Carol Vassar, podcast host/producer:
Anything I haven’t asked either of you that you’d like to share?
Dr. Larry Moss, President & CEO, Nemours Children’s Health:
I’ll just underscore the power of working together. So you could say, “Gosh, is Nemours out of its lane doing something like this? We’re a hospital, and we run clinics.” And I’d say this partnership sort of beautifully exemplifies that our lane is anything that affects the health of children, but we can’t do all that multitude of things alone. We need experts in those areas. And we couldn’t have begun to even think about creating something like this without the expertise, the support, the partnership of an organization that’s an expert on veteran issues like the Elizabeth Dole Foundation. And I couldn’t have asked for a better partner as we move this forward. And so it hasn’t just been a privilege. It’s really been an honor to be allowed to do this work.
Steve Schwab, CEO, The Elizabeth Dole Foundation:
Well, and Carol, let me say that what Nemours has done is what we hope individuals and organizations across the country will do in recognizing that less than one-half of one percent of America fights to protect our freedom and security. Think about that. Less than one-half of one percent of America allows us to be America, but millions of family members surround those service members and those veterans. And so, while there is a big disconnect between civilian society and the military and veterans that serve us, we all have a responsibility to care for them when they come home. We have a responsibility to understand their unique needs. And right now, we have a patriotic duty to do what we can individually and organizationally to step in or stepping in as needed. And that’s what Nemours has done here in a really inspiring way. And our hope is, and we’re already seeing it happening, that more organizations will follow their lead.
Carol Vassar, podcast host/producer:
Stephen Schwab is the CEO of the Elizabeth Dole Foundation. He was joined in conversation about our nation’s hidden helpers and the Hidden Helpers Coalition by Dr. Larry Moss, president and CEO of Nemours Children’s Health, which is an active member of the coalition.
Music:
Well Beyond Medicine!
Carol Vassar, podcast host/producer:
The course created by Nemours to educate medical providers about the unique health needs of hidden helpers is available to anyone, anywhere, anytime, at no cost. We’ll put a link to that course in our show notes for this episode. And if you are a provider, CME credits are available, but this isn’t the end of the Hidden Helper story. Our next episode of the Well Beyond Medicine Podcast features firsthand accounts of a military spouse caring for a wounded warrior and their seven-year-old son and of a hidden helper who doesn’t remember a time when she wasn’t helping her mom care for her dad, who was severely injured by a roadside bomb while serving in Iraq in 2005. That’s next time. Please join us.
Our production team for both of these episodes includes Che Parker, Cheryl Munn, Allison Gertel-Rosenberg, Kate Blackburn, Susan Masucci, Lauren Teta, and from the Elizabeth Dole Foundation, Lisell Perez-Rogers, Tessa Miller, and Brandon Hofacker. Thanks to our guests, Steven Schwab and Dr. Larry Moss, for sharing their time and expertise. And thanks to you for tuning in. I’m Carol Vassar. Until next time, remember, we can change children’s health for good, Well Beyond Medicine.
Music:
Well Beyond Medicine!
