A Q&A with Elizabeth Dole and Steve Schwab

Elizabeth Dole is the founder of the Elizabeth Dole Foundation. Steve Schwab is the Executive Director of the Elizabeth Dole Foundation.

 

Q: Elizabeth Dole, Steve Schwab, thank you so much for joining us today. I want to talk a little bit about the Elizabeth Dole Foundation. Can you tell me, how did it begin? What are the markings of it?

ELIZABETH DOLE: About six years ago, my husband Bob was hospitalized at Walter Reed for almost 11 months. I was there every day. What I saw just opened my eyes to something I had not been aware of. These young spouses, I remember one, the room next to Bob, the young woman was lying on a pallet on the floor by her husband’s bed. This was for months, but he had lost both legs above the knee, and she was caring for him. Mrs. Steward down the hall, her son was about to undergo his 40th operation, and I began to invite some of the caregivers to come down to Washington for dinner just to get them out of the hospital room for a night.

{mosads}Of course you were being drawn more and more into what’s happening in their lives, and all the challenges they’re facing. Once Bob was released from the hospital, I decided I’ve got to do something about this. It was very much on my heart, so I established the foundation. We were aware right away that we were going to need evidence-based research to really be able to get to the heart of the problems and what we could do to help. That’s when we commissioned the RAND Corporation to undertake the first national comprehensive evidence-based research that’s been done on this population, military and veteran caregivers.

It really goes back to my husband being hospitalized, and my eyes being opened to something that I would not have been aware but for that period of time in the hospital.

 

Q: How would you describe the foundation’s mission?

DOLE: Certainly, the foundation’s mission is to empower military and veteran caregivers. We do that by raising awareness, also providing support for the many concerns that they have. We do this through collaborations where we’re able to really significantly impact their lives in a direct way. Then driving research, and certainly championing legislation, policy.

 

Q: What about the Hidden Heroes program?

DOLE: Our chairman for the Hidden Heroes campaign is Tom Hanks. [Last September] Tom came to Washington to provide the leadership to launch this campaign. He had provided for public service announcements. He had done photographs which have been running in magazines and newspapers since that time. We launched that day a couple of key initiatives. One is Hidden Heroes Cities. This is an effort to drive down to the local level what we’re doing nationally. In other words, to work with the mayor, other city officials in different areas to come up with a plan for identifying the caregivers in their community, and then providing them with local resources.

It’s important because this is the way we really find them, through these Hidden Heroes cities. We now have 100 cities, from San Francisco to Chicago, New York to New Orleans. That continues to grow. The other aspect that we launched at the event last September was HiddenHeroes.org, a state-of-the-art, first of its kind website specifically designed for military and veteran caregivers. This is important because many of these caregivers don’t realize there’s anyone else out there. They’re alone. They don’t even realize they’re caregivers. We need to drive them to this website where they can find a safe, secure place to visit with hundreds of other caregivers to share experiences, to talk over issues, cry on someone’s shoulder if they need to, to have that camaraderie.

Then also at HiddenHeroes.org, there are 200 at the present, and this is continuing to grow, but there are 200 carefully vetted resources which are available right away to caregivers who are very much in need of these resources.

 

Q: You mentioned that some caregivers might not even realize that they’re caregivers. Can you tell me a little?

DOLE: No, they really don’t. It’s amazing. I’ve talked to so many who will say, “I’m his mother. I’m just the mother. Of course I’m taking care of my son.” “I’m his spouse. Sure, I’m taking care of my husband or my wife,” but they don’t identify as caregivers. If they would just identify, they’d find that there are a lot of … Well, not a lot, but there are some resources available now. Of course, we’re trying to do everything we can to increase those resources, but there are certainly some available now, and we can provide that safe, secure place for them to communicate with other caregivers. In the past, there have been different projects, a number of different plans, people who are trying to help, but it isn’t necessarily evidence-based, nor are there metrics to determine whether that particular service is really effective or not. We want these resources to be carefully vetted.

STEVE SCHWAB: The other thing I would add, too, is for anyone who sees this to know that they should ask a military family if they have a caregiver, if there’s a caregiver present, that they should refer them to HiddenHeroes.org. You mentioned caregivers are reluctant to self-identify, and that’s because many of these families are so humble. They come from a military background. That’s what this movement is all about. It’s to encourage those folks to raise their hands and to connect with other folks just like them at Hidden Heroes.

 

Q: Is there any particular story that comes to mind over the years that you’ve been doing this of working with a military caregiver?

DOLE: There’s one that’s very poignant. Let me give you a couple of examples. First, to be more direct in answering your question, one of our caregivers, her husband has lost both legs, his right arm, several fingers on his left hand. She was bathing, feeding, dressing. I remember when we gave a speech together that she ended her comments by saying, “I’m 30 years old, and I’ll be a caregiver for the next 50 years.” Then I think about Stephanie and Tom Smith of Arkansas. Stephanie has shared with us the very difficult situation that she’s handling, because she said, “For caregivers like me,” she said, “We’re not just dealing with sadness or depression on the part of our veteran. We’re dealing with people who yearn for death.”

She told me how he had made several attempts at suicide, and at one point, Tom was being taken to the hospital in the ambulance. Stephanie was in the back with him, and he was pleading with her to let him die. “Please let me die this time.” He said, “I won’t hurt anymore, and I’ll be reunited with the friends I lost on the battlefield.” He said, “I already died in Iraq. My body just doesn’t know it yet.” You can imagine what she’s going through, because she is reacting to every possible trigger that could set off a situation for Tom. In other words, maybe one thing happens to him, but for her, it’s all day long, constantly, day after day after day trying to watch for potential triggers and make sure he doesn’t face them.

It’s an incredible situation in terms of the toll it takes on the caregiver, on her mental health. In fact, many of them dealing with situations like that are having issues themselves.

SCHWAB: My boss is a volunteer, and she has started and is leading a movement to take caregivers from the situation she just described towards empowerment. We have a program called the Dole Fellows Program where we work really directly to offer trainings for empowerment, peer connections, education to put those caregivers on a path to strength. There’s just as many or more caregivers who have gone through that program who today would say they’re a different person because they’ve made connections with their peers, because they’ve found respite and support in the resources that we’ve offered them through our partners. It’s working when we do connect the caregivers. That’s important to take stock of, as well.

 

Q: Is there anything you’ve learned from that program about the country as a whole in regards to military caregivers?

SCHWAB: I would just say that what we’ve learned is that there still is a big disconnect between civilian folks and military families. Less than 1% of our country is fighting to protect our freedom and security, so many citizens don’t understand what’s happening inside of military families. That’s part of we’re trying to do through our Hidden Heroes Cities program, is to educate communities on how to ask the right questions, and to encourage their neighbors to stand up and help them find support.

DOLE: What’s interesting here is that once you talk with a person about what’s going on, almost inevitably they’ll say, “I had no idea. What can I do to help?” Whether it’s philanthropists or state officials, federal officials, small businesses, corporations, non-profit organizations. As we’ve reached out to all of these entities, we have a coalition now composed of about 300 organizations and individuals who want to help, who’ve said, “I had no idea.” This goes back to the point of the divide. There’s no question. That’s less than 1% defending out freedom and our security today.

Most Americans have no idea what’s happening in military families, so you almost have to start there to open that door, and to explain what’s going on. Then they’re anxious to help. These are the men and women, our service members who have borne the battle, and our nation has a sacred vow to serve those who have borne the battle. As we illustrate, these are the people who borne the battle, and they need your help. The help is very forthcoming. It’s wonderful to work with so many people who wanted to join forces with us, and do what they can.

 

Q: Tell me a little bit about the support you’ve received from Congress among other groups.

DOLE: Several years ago, we started the Hidden Heroes Congressional Caucus. [House Minority Leader] Nancy Pelosi [D-Calif.] has been extremely active in this. She’s had several events for us on the Hill. She and [Rep.] Phil Roe, who’s the Veteran’s Affairs chairman, they’re our leaders on the House side. Then in the Senate, John McCain, Jack Reed, and Susan Collins, three senators are our leaders of the Hidden Heroes Caucus. Of course, Susan Collins just recently had a hearing on this subject. We have great support up there. It really makes a difference, because they’ve been active in different events with us, too.

One aspect that has been important to these caregivers is the faith side of things, because when they really get depressed and down with the heavy responsibilities, they turn to the clergy, but the clergy has no idea what’s going on in these families. We’ve had to educate the clergy. Joel Osteen has been my leader with regard to helping on this subject. He came to Washington, had an event on Capitol Hill, and all of these caucus leaders were there to speak. They’ve been so supportive and helpful in any way that they can. Then we have a number of collaborations. It’s really a part of this national coalition with these 300 organizations.

Lawyers for Heroes is one of the collaborations. This involves my foundation working with the Military Officers Association of America Public Council, which is the largest pro bono law firm in America, and the American Bar Association. When a caregiver and the family become really financially stressed, and they have a legal problem, they can’t afford to hire a lawyer, this group will provide a lawyer pro bono. There are a number of collaborations like that, which we’ve helped to lead, that address specific problems, whether it’s legal issues or financial issues. USAA has been very active with us on the financial side.

These partnerships are so valuable. Again, people are willing to step up and do it as soon as they learn what the problems are.

 

Q: Along those same lines, what would you say is the biggest problem or issue facing military caregivers that policymakers here in Washington need to address?

DOLE: I think that what we need right now as the Military and Veteran Caregiver Services Improvement Act, I had the opportunity to testify recently in the senate on this legislation. Ryan Phillippe, the young actor from Hollywood, who has family members who have served in the military and feels passionately about the issue, testified with me. There’s no question that one of the major issues right now is to include pre-9/11 caregivers. What we’ve been talking about is basically post-9/11. The pre-9/11 caregivers are dealing not just with war-related wounds, illnesses, and injuries, but also the compounding of those injuries by virtue of the aging of the veteran. They have a huge situation to deal with.

They have virtually no support. They’re just not included in the support that the post-9/11 caregivers have at this point. We need to get that legislation to expand services to pre-9/11, as well. Of course for post-9/11 caregivers, many of them are so young. The issue there is how are we going to care for them five, 10, 20 years out? It’s alarming almost, the lack of information that we have today about how to support caregivers long-term. That’s why we’re supporting research in order to get the data that’s needed. That must happen, because right now, we’re not prepared. Our country is not prepared to help these caregivers long-term.

SCHWAB: All of this is research-based. The bill the senator mentioned was built on the first study that we did, so all the deficiencies and gaps that study identified have been integrated into that legislation. That’s why every year we pushed as hard as we’ve pushed to get that legislation passed. The senator [Dole] just recommissioned RAND and unveiled at the most recent hearing another study. That study points out ten area of research deficiency that are very pressing for military caregivers, ranging from the issues that face children. Right now, there’s absolutely no research at all on the effects of caregiving on military children.

You can imagine there’s hundreds of thousands, if not millions of those children inside these families. Right now, we’re not learning anything about the long-term implications of them serving as primary and secondary caregivers. All of that research comes to bear as we implement our strategies.

DOLE: A couple of other areas would be: What is the effect of caregiving long-term on the caregiver? What’s the effect of caregiving on the care recipient? How are the care recipient’s needs going to change over time? We don’t have information on any of that. It’s really important to get that so we can then develop the services to help them long-term. That’s a major gap right now. I think the committee when we testified seemed to really pick up on that. I felt there was a lot of support in the room for pursuing that research. We’re going to need funding for it.

 

Q: What would you say, though, to critics who might say, “Look, our country has a lot of problems? Why put money towards something like this? As good a cause as it may be, why do that right now?”

DOLE: The fact that we have made a sacred vow to serve those who have borne the battle. These are the men and women who have borne the battle and our country needs to fulfill that commitment. Right now, these caregivers are an unpaid workforce, and they’re providing about $14 billion a year which our society would otherwise have to pick up. They’re doing this, and you think about the quality of life for the veteran who’s wounded, ill, or injured being in his own home or her own home, taken care of by a loved one versus hospitalized or institutionalized. It makes all the difference in the world.

Also, there are studies that indicate that it costs about $36,000 a year to have that care in the home. If the person was institutionalized, it would be about $330,000, so this is cost effective and it’s also fulfilling that sacred vow, which is so important because these are the people who are protecting our freedom and our security.

 

 

Q: What advice would you give, or maybe have you given to caregivers that you met on the way? 

DOLE: Goodness, we urge them to go to, first of all, to HiddenHeroes.org to get those resources, to be able to communicate with other caregivers. Actually, we bring in our caregiver fellows who represent all the 50 states. Each class comes into Washington at least once, and we have an opportunity to give them time with one another physically, which is wonderful. Also, they storm [Capitol] Hill. We set up appointments for them with their congressmen and senators, and they support legislation. It gives them an opportunity to feel a sense of purpose in terms of using their experience. No one is better at talking about this than the caregiver.

If someone were seated right here, I’d say, “That person is the one who can tell it far better than Steve and I,” because they’re experiencing it. Telling those stories to members of Congress and to other groups, to civic organizations in their home town. They do speeches, they do interviews at the local level, the national level, and we try to help with all of these activities to have them well-prepared.

SCHWAB: So many caregivers think they’re by themselves, and there aren’t others like them. I think the important message to impart to them is the fact that there are a lot of others like them, and they can find those folks at HiddenHeroes.org.

 

Q: How are military caregivers affected career-wise or financially? Even in their daily lives, how does being a caregiver affect them?

DOLE: Imagine this: They’re home from the hospital now. That caregiver is providing all the medications. They’re giving injections in many cases. They’re arranging for rehabilitation. They are handling all of the legal matters for the family, financial issues, and they’ve not had experience in legal and financial issues in many cases because they’re so young, the post-9/11 caregivers. They’re trying to prevent triggers that can set off an emotional response that can last for an extended period of time, and they’re raising children.

Many of them are also bathing, feeding, dressing the wounded, ill, or injured. In some cases, they have to enter the workforce because they’re the sole breadwinner for the family, so they need flexible work. Can you imagine having all of that going on in your life, and you’re arranging for doctor’s appointments, providing the transportation, to the doctors? When they have multiple illnesses and injuries, they’re trying to coordinate access to healthcare systems with different structures. It’s mind-boggling, it really is. Obviously with all of that, and the stress and strain, and the depression that can occur because of this, and illnesses such as heart problems and immune system problems, they need respite.

They need all the help we can give them in terms of finding some relief from this. It’s really staggering, isn’t it?

SCHWAB: Many of these folks have become the sole breadwinner for their families because they have to. When I comes to serving their wounded warrior, they often have to leave the workforce, which requires them to go and serve as the family’s sole breadwinner. The implications are having a full-time job while serving as, in some cases, a full-time caregiver, while raising children, managing a household. It’s endless.

 

Q: There’s been a lot of talk about Obamacare and repealing and replacing it. Has Obamacare affected the role of caregivers at all?

SCHWAB: There’s not a lot of data on it yet. What we know to be true is that more families have more choices for insurance. One of the original revelations of the first study was that a lot of these families are uninsured. We’re still waiting on more data to see what the numbers tell us, but we are in favor of any plan that’s going to offer flexible, affordable insurance to these families. 

DOLE: Many of them have no doctor, much less insurance. In fact, one of the things that we’re hoping the Veteran’s Administration might do is when a veteran comes in for an appointment to have a wellness check for the caregiver, because many of them are so involved in providing all of these services that they don’t take good care of themselves. If they have no doctor and no insurance, they need help.

 

Q: Do you think the current administration will affect caregiving legislation?

SCHWAB: We think that the president is committed through the great passion and energy that we’re seeing from Secretary [of Veterans Affairs David] Shulkin. [The] secretary has been an ally dating back to when he served as the undersecretary for [former] Secretary [of Veterans Affairs Robert] McDonald. [Elizabeth] and I recently met with Secretary Shulkin. He’s expressed his interest and passionate belief that pre-9/11 caregivers should be served by the program, so we believe that this administration is taking the issues and challenges of this population very seriously.

DOLE: Absolutely. He is concerned about caregivers across the board, across the country, and he’s making some changes now in the comprehensive caregiver program. We have made recommendations to some changes that we think need to be made, and he’s determined to get it right. He’s giving that very careful attention. I think there’s no question that in terms of issues that involve our veterans and caregivers, they’re right on top of it.

 

Q: What can the average person do, someone who’s never heard about the role of military caregivers? What can civilians do?

DOLE: Certainly they should go to HiddenHeroes.org, because there are many suggestions on that website as to how an individual, or a church, or a business, or a non-profit can make a difference for caregivers. That’s a great place to go. Also just simple things: If there’s a family in your neighborhood, help them. Mow the lawn. Pick up the prescriptions. Pick up the groceries. Take a meal over. That can make a big difference. I would suggest one other thing: Hidden Heroes Cities. You can go to HiddenHeroes.org, see what cities are already signed up.

If [your] city is not one of our cities, approach your mayor or other members of the city council, leaders in the community and suggest that maybe it would be a good idea to try to identify caregivers in that community. You can be the real impetus for setting up a Hidden Heroes city. It’s not a difficult thing to do. There are leaders in the community like Red Cross and other organizations that will meet. Our foundation helps them to identify how to look for caregivers in the community, and then to come up with local services that can really be helpful to them. That’s a great way to do something really significant.

SCHWAB: If you know a military family, and most folks know someone who’s fought to protect our freedom and securities, ask them if there’s a caregiver. Talk about caregivers. Ask about it in your church or your workplace, hospital setting, civic organizations. The more they hear people talking about them and embracing them and acknowledging them, the more they’ll come out from the shadows.

Dole is a former North Carolina Republican senator and has served as the secretary of Transportation, secretary of Labor and president of the American Red Cross. She founded the Elizabeth Dole Foundation in 2012. Schwab is the executive director of the Elizabeth Dole Foundation. This interview has been edited and condensed by The Hill staff.