Text: S.Hrg. 115-364 — MILITARY CAREGIVERS: FAMILIES SERVING FOR THE LONG RUN

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[Senate Hearing 115-364]
[From the U.S. Government Publishing Office]


                                                        S. Hrg. 115-364

         MILITARY CAREGIVERS: FAMILIES SERVING FOR THE LONG RUN

=======================================================================

                                HEARING

                               BEFORE THE

                       SPECIAL COMMITTEE ON AGING

                          UNITED STATES SENATE

                     ONE HUNDRED FIFTEENTH CONGRESS


                             FIRST SESSION

                               __________

                             WASHINGTON, DC

                               __________

                             JUNE 14, 2017

                               __________

                            Serial No. 115-6

         Printed for the use of the Special Committee on Aging
         
         
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                       SPECIAL COMMITTEE ON AGING

                   SUSAN M. COLLINS, Maine, Chairman

ORRIN G. HATCH, Utah                 ROBERT P. CASEY, JR., Pennsylvania
JEFF FLAKE, Arizona                  BILL NELSON, Florida
TIM SCOTT, South Carolina            SHELDON WHITEHOUSE, Rhode Island
THOM TILLIS, North Carolina          KIRSTEN E. GILLIBRAND, New York
BOB CORKER, Tennessee                RICHARD BLUMENTHAL, Connecticut
RICHARD BURR, North Carolina         JOE DONNELLY, Indiana
MARCO RUBIO, Florida                 ELIZABETH WARREN, Massachusetts
DEB FISCHER, Nebraska                CATHERINE CORTEZ MASTO, Nevada
                              ----------                              
                 Kevin Kelley, Majority Staff Director
                  Kate Mevis, Minority Staff Director
                                CONTENTS

                              ----------                              

                                                                   Page

Opening Statement of Senator Susan M. Collins, Chairman..........     1
Statement of Senator Robert P. Casey, Jr., Ranking Member........     2
Statement of Senator Richard Burr................................     4
Statement of Senator Thom Tillis.................................     4

                           PANEL OF WITNESSES

Senator Elizabeth Dole, Founder, Elizabeth Dole Foundation, 
  Washington, DC.................................................     6
Ryan Phillippe, Actor, Director, and Writer, Los Angeles, 
  California.....................................................     8
Terri Tanielian, M.A., Senior Behavioral Scientist, RAND 
  Corporation, Arlington, Virginia...............................    20
Mary Hahn Ward and Thomas Ward, Veteran Caregiver and Veteran, 
  Wilmington, North Carolina.....................................    22
Melanie and Joe Swoboda, Veteran Caregiver and Veteran, Levant, 
  Maine..........................................................    23
Wanda and Samuel Ickes, Veteran Caregiver and Veteran, Alum Bank, 
  Pennsylvania...................................................    24

                                APPENDIX
                      Prepared Witness Statements

Senator Elizabeth Dole, Founder, Elizabeth Dole Foundation, 
  Washington, DC.................................................    40
Ryan Phillippe, Actor, Director, and Writer, Los Angeles, 
  California.....................................................    42
Terri Tanielian, M.A., Senior Behavioral Scientist, RAND 
  Corporation, Arlington, Virginia...............................    44
Mary Hahn Ward, Veteran Caregiver, Wilmington, North Carolina....    54
Melanie Swoboda, Veteran Caregiver, Levant, Maine................    54
Wanda Ickes, Veteran Caregiver, Alum Bank, Pennsylvania..........    55

                  Additional Statements for the Record

Wounded Warrior Project, Statement for the Record................    58

 
         MILITARY CAREGIVERS: FAMILIES SERVING FOR THE LONG RUN

                              ----------                              


                        WEDNESDAY, JUNE 14, 2017

                                       U.S. Senate,
                                Special Committee on Aging,
                                                    Washington, DC.
    The Committee met, pursuant to notice, at 2:34 p.m., in 
Room SD-106, Dirksen Senate Office Building, Hon. Susan Collins 
(Chairman of the Committee) presiding.
    Present: Senators Collins, Tillis, Burr, Fischer, Casey, 
Blumenthal, Donnelly, Warren, and Cortez Masto.

    OPENING STATEMENT OF SENATOR SUSAN M. COLLINS, CHAIRMAN

    The Chairman. This hearing will come to order.
    Good afternoon. I welcome all of you--veterans, caregivers, 
and advocates, especially my former colleague Senator Elizabeth 
Dole, who is an extraordinary advocate for our military 
caregivers.
    Our military families, heroes in plain clothing, are 
serving in America's cities and communities every single day.
    The effects of military service often do not end with a 
tour of duty. For many veterans and their families, the journey 
sometimes extends for a lifetime. For some with both visible 
and invisible scars, the transition home is not easy. Recovery, 
too, can take decades. Along the way, mothers, fathers, wives, 
husbands, and other family members and friends step in to 
serve.
    Today we will focus on those who care for America's 
veterans. In the United States, there are 5.5 million military 
caregivers. These family members and loved ones provide care on 
a constant and routine basis to our veterans. They are often 
vital in assisting veterans to make the transition all the way 
home. Military caregivers improve recovery, rehabilitation, and 
reintegration of wounded, injured, and disabled veterans.
    The number of military caregivers has been on the rise as 
veterans from Iraq and Afghanistan return home. Approximately 
20 percent of military caregivers today are caring for a post-
9/11 veteran. The needs and experiences of post-9/11 veterans 
differ from those of pre-9/11 veterans. While veterans from 
past conflicts and wars are aging and facing age-related 
conditions including Alzheimer's and cardiovascular diseases, 
post-9/11 veterans tend to be younger and face higher rates of 
PTSD, depression, substance abuse, and traumatic brain injury. 
Today we will learn more about the unique needs of military 
caregivers and what we can do to better support them.
    We will also unveil a RAND report, commissioned by the 
Elizabeth Dole Foundation, called ``Improving Support for 
America's Hidden Heroes.'' This report is a research blueprint 
for the future that offers a vision to advance our 
understanding of caregiver needs.
    Our military caregivers, like all caregivers, make many 
personal and financial sacrifices to ensure that their loved 
ones have the care they need. They may have to miss work, turn 
down promotions, or even leave the workforce altogether, 
creating what is at times an enormous financial strain for 
families. This toll affects the national economy as a whole. 
The loss in productivity just among post-9/11 caregivers costs 
our Nation approximately $6 billion per year.
    I have introduced bipartisan legislation that would better 
serve caregivers, including our military families. The RAISE 
Family Caregivers Act would require the Department of Health 
and Human Services to develop a national strategy to recognize 
and support our more than 40 million family caregivers. This 
bill, which I introduced with Senator Tammy Baldwin, has passed 
the HELP Committee, and I look forward to seeing it signed into 
law one day as a result of the advocacy of many who are here.
    In addition, the bipartisan Military and Veteran Caregiver 
Services Improvement Act would expand eligibility for the VA's 
caregiver program to veterans of all generations, not just the 
post-9/11 generation. This is a program that helps veterans who 
are wounded, ill, or injured, by supporting and providing 
resources to those who have taken on the caregiver role for 
them.
    And the Lifespan Respite Care Reauthorization Act would 
authorize $15 million per year over the next 5 years to allow 
full-time caregivers to take a temporary break from their 
responsibilities. This respite care is crucial. It protects the 
health of caregivers, decreases the need for professional long-
term care, and allow individuals who need care to remain in the 
comfort of their own homes.
    Despite their enormous sacrifice, military caregivers 
typically do not receive awards and admiration that America's 
veterans deservedly do. We must never forget our military 
caregivers, who are also true heroes. America's military 
caregivers enable veterans living with visible and invisible 
injuries to recover, remain involved with their communities, 
and enjoy fuller lives. We should do all that we can to support 
them.
    I am now pleased to turn to our Ranking Member, Senator 
Casey, for his opening remarks.

  OPENING STATEMENT OF SENATOR ROBERT P. CASEY, JR., RANKING 
                             MEMBER

    Senator Casey. Thank you, Chairman Collins. I appreciate 
you calling this hearing, and I want to thank you and so many 
others today.
    I want to thank as well our former colleague Senator Dole 
for your tireless work on behalf of military caregivers.
    Many of the brave men and women who have served our country 
in the armed forces return home bearing the marks of that 
service. Joining us today are some of those who served bravely 
so that America can remain the land of the free.
    To paraphrase what my father once said, ``We pray for 
military families and their loved ones serving around the 
globe; but we also pray for ourselves that we may be worthy of 
their valor.''
    So thank you for your service to our country.
    In order to better serve you, we are holding this hearing 
today to recognize not only our veterans, but the hidden heroes 
of the military, the estimated 5.5 million military caregivers 
across the country.
    Military caregivers come in many different forms-- spouses, 
family, friends, neighbors, and, of course, fellow veterans 
among them. The majority--roughly 60 percent--of those 
caregivers are women.
    We will also hear from our witnesses caring for a loved one 
and understanding that caring for a loved one can be stressful. 
It can be stressful physically, emotionally, and financially.
    We have made progress in helping our caregivers, but as our 
witnesses will tell us, we have to do more. We must strengthen 
the supports that are currently available and help more 
caregivers who need access to these supports.
    Whether a soldier served in Vietnam or Afghanistan, their 
caregivers should receive the same benefits and support from 
the VA. That is why I am a cosponsor of bipartisan legislation 
to expand the supports and services available to caregivers.
    Ensuring veterans and their families receive the care they 
need is also why I will continue to fight against efforts to 
decimate Medicaid.
    A report released by the Congressional Research Service 
explains that not all veterans are eligible for medical care 
from the VA. And many veterans cannot access VA services, for 
example, because they do not have a VA facility nearby. 
Sometimes family members do not qualify for VA services. That 
is when other coverage options become important.
    Medicaid provides health care to over 900,000 working-age 
veterans--340,000 of whom gained coverage following recent 
action by some states to expand Medicaid--and 660,000 veterans' 
spouses covered as well.
    For these families who served our country--and for millions 
more children, individuals with disabilities, and seniors--
Medicaid must be protected.
    Since it covers those 900,000 veterans and over 660,000 
spouses, proposals to cut Medicaid and substantially change 
health care should be the subject of hearings.
    So I look forward to hearing today from our witnesses about 
additional steps Congress can take to better support our 
Nation's military caregivers and their families.
    Thank you.
    The Chairman. Thank you, Senator Casey.
    This appears to be North Carolina day, but for the Aging 
Committee, it is always Maine and Pennsylvania's day. But we 
are very fortunate that both Senators from North Carolina serve 
on the Committee, and one of our chief witnesses plus some of 
our veterans and caregivers are from North Carolina. So I would 
like to give Senator Burr and Senator Tillis the opportunity to 
welcome those who are here from your home states.

               STATEMENT OF SENATOR RICHARD BURR

    Senator Burr. Well, thank you, Chairman Collins and Ranking 
Member Casey, for holding this important hearing on military 
caregivers. I particularly want to thank you for allowing 
Senator Tillis and myself the opportunity to share the pleasure 
of introducing the fine North Carolina witnesses we have here 
to testify and represent here today.
    Military caregivers is an extremely important issue 
nationally and certainly in North Carolina, where veterans make 
up 10 percent of our adult population. We have two power 
couples fighting for veterans represented here today, and for 
my half of the introductions, I want to welcome my former 
colleague in the United States Senate and good friend, 
Elizabeth Dole, back to the Senate. Senator Dole has a long and 
distinguished record of public service in and out of Government 
that many here know well. From leading the Department of 
Transportation to serving as Secretary of Labor to serving as 
president of the American Red Cross, Senator Dole has been 
there when her Nation called. And she has been there with grace 
and diligence.
    What I want to salute her for today is but just the latest 
chapter in her story of public service, and that is her 
veterans advocacy. Not only has she stood by the side of a 
certain Army Captain, who also knows his way around these 
Senate halls, but she has also been a relentless advocate 
through the Elizabeth Dole Foundation of all of our Nation's 
veterans. Bob and Elizabeth Dole, whether they are in the halls 
of the United States Senate or the halls of Walter Reed, 
continue to serve our Nation and to speak up on behalf of the 
needs of veterans and their caregivers. I am glad that our 
Committee will be hearing from them today and learning 
important lessons about what is working and where we still need 
to improve.
    I thank you, Senator Dole, for the grace and the steadfast 
attention you bring to any issue you tackle, and I know that 
your Senate family as well as our military caregiving community 
will be well served by hearing your voice today.
    I now turn to my friend and colleague Senator Tillis, who 
will make additional introductions.

                STATEMENT OF SENATOR THOM TILLIS

    Senator Tillis. Thank you, Senator Burr. Senator Dole, it 
is great to see you here. I appreciate you and this advocacy 
for hidden heroes. You and I have had many discussions about 
it. I enjoyed the kickoff, and I look forward to continuing to 
provide support.
    Chairman Collins, I have the distinct privilege to 
introduce two other constituents, Mary and Tom Ward. I have met 
Mary and Tom Ward on a few different occasions now, and from 
time to time I even get to pet the dog. But they would not let 
me do it today.
    But they have traveled here, and I have to say it is a real 
testament to their commitment to the issue of caregiving, not 
only for themselves but for everybody else. And I appreciate 
your leadership and advocacy, and we love it every time you 
come up here and visit.
    Tom's service as a Marine dates back from 1972 to 1975, and 
in 1993, I think you were about 13 years into your marriage 
when Tom contracted encephalitis, and after lengthy treatment, 
signs of cognitive difficultly surfaced.
    In 2010, Tom was diagnosed with ALS. ALS is a progressive 
disease that veterans develop at rates higher than the general 
population. Mary will share her story as a caregiver for her 
husband, including the challenges serving as a caregiver and 
still continuing to remain employed, and actually advocate on 
behalf of all caregivers.
    Madam Chair, I am pleased to have the Wards here today, and 
I appreciate their leadership. I look forward to their 
testimony.
    I will also tell you, Tom and Mary, I am on the Veterans' 
Affairs Committee, which is meeting at the same time right now, 
and I am going to step out of this Committee and try to get 
back, because you all know the work that we do there is also 
directly related to this issue.
    Also, you have my commitment as the Chair of the Personnel 
Subcommittee of Senate Armed Services that we are trying to get 
this right from the time somebody is in active service until 
the time they move their way through veteran status. Thank you 
for being here today.
    Thank you, Madam Chair.
    The Chairman. Thank you very much.
    Although Senator Dole has already been introduced, I do 
want to add just a few comments about the work that she has 
done as the founder of the Elizabeth Dole Foundation and a 
champion for military caregivers.
    Through the foundation, Senator Dole has shed light on the 
immense challenges facing our Nation's 5.5 million military 
caregivers, and she has really worked across the aisle. She 
actually brought Nancy Pelosi and me together to write an op-ed 
in support of a bill--not that that is that shocking, but 
around here these days that kind of bipartisan collaboration 
can be rare indeed--and that shows to me the work that Senator 
Dole has done to create a community of military caregivers 
through which they can connect, share advice, stories, and 
advocate for more support. And I want to point out that Senator 
Dole does this just as a volunteer, and I think her leadership 
has been extraordinary. I am familiar with the Dole Caregiver 
Fellowship Program and have had an individual from the State of 
Maine participate in that, and I just want to thank you for 
your service, and I look forward to hearing your testimony.
    On the same panel we will hear from someone who my staff 
was all excited about meeting, and that is Ryan Phillippe. As 
many of you know, Ryan is an actor, director, and writer, and 
more important from today's perspective, he is also an 
ambassador of the Elizabeth Dole Foundation's Hidden Heroes 
Campaign, which helps connect military caregivers to critical 
resources and connect them with other caregivers. So, Ryan, 
thank you for supporting our hidden heroes who care for our 
veteran heroes each and every day.
    Senator Dole, please proceed.

 STATEMENT OF SENATOR ELIZABETH DOLE, FOUNDER, ELIZABETH DOLE 
                           FOUNDATION

    Senator Dole. Thank you so much. Thank you, Chairman 
Collins, Ranking Member Casey, and members of the Committee for 
calling today's hearing. By doing so, the Committee 
demonstrates its dedication to recognizing our Nation's 
military and veteran caregivers.
    And, Chairman Collins, I owe you special thanks for your 
strong support of key legislation and the Hidden Heroes Caucus, 
which you are co-chairing. You are sending a very powerful 
signal that our Nation's leaders must stand with America's 
military caregivers. Thank you so very much.
    This is not my first time testifying before the Senate 
Special Committee on Aging. Recently, I came across testimony I 
gave on June 29, 1978--39 years ago--when I was a member of the 
Federal Trade Commission. And like each of you, I once sat up 
there on the dais as a member of this Committee.
    To be honest, with the many issues before the Senate, I did 
not know at that time the enormous benefit military and veteran 
caregivers are making to our Nation and the huge personal toll 
it is taking.
    That all changed for me in 2011 when my husband, Bob, was 
hospitalized at Walter Reed. I became friends with young 
spouses, mothers, dads, sitting bedside, selflessly looking 
after their wounded, ill, or injured veteran. Their strength 
was incredible. Yet I could see they were carrying an emotional 
weight almost too heavy to bear. As they reeled over their 
loved one's injuries, they were being asked to make extremely 
difficult decisions without any preparation. And they were 
quietly wrestling with the fact that they might be serving in 
this new role for the rest of their lives.
    Just as heartbreaking are the stories of pre-9/11 
caregivers who have been supporting their loved ones for years, 
without any acknowledgment, struggling to care for the latent 
effects of undiagnosed post traumatic stress, Agent Orange, 
exposure to burn pits, or decades-old traumatic brain injuries 
that are now causing early-onset dementia. These caregivers are 
just as terrified, just as isolated, just as important to their 
veterans. But when they apply for the VA caregiver stipend, 
they are told that the timing of their veteran's service does 
not qualify them for support.
    An incredible 5.5 million Americans act as military and 
veteran caregivers. They are serving in each of your states 
right now, dressing, bathing, and feeding our veterans, 
performing at-home injections, managing medications, staying on 
constant guard for emotional triggers. For many, it is a 24-
hour job.
    I established the Elizabeth Dole Foundation in 2012 to 
raise awareness and support for these hidden heroes. We began 
by commissioning the RAND Corporation to undertake the first 
comprehensive, nationwide, evidence-based research on military 
caregivers. RAND's experts concluded that the most important 
factor to a wounded warrior's recovery or improvement was a 
well-supported caregiver. This statement could have been the 
headline of the report, but it was overshadowed by more 
alarming findings.
    The research uncovered high instances of isolation, 
physical ailments, depression, unemployment, debt, legal 
challenges, and much, much more. They are doing a tremendous 
job, but they are clearly, clearly suffering under the 
circumstances.
    There is an also an economic argument for supporting 
military caregivers. They provide nearly $14 billion dollars a 
year as an unpaid, voluntary workforce.
    Last September, the Elizabeth Dole Foundation launched 
Hidden Heroes, a multifaceted campaign featuring a first-of-
its-kind Web site full of carefully vetted resources and a 
safe, secure place for caregivers to connect with one another. 
We announced Hidden Heroes Cities, the galvanizing of 
communities to identify caregivers in their midst and the local 
resources to support them. I am proud to say we have recruited 
100 cities to date, from Augusta to Pittsburgh, Charlotte to 
Las Vegas.
    Our campaign is chaired by actor Tom Hanks, and the good-
looking guy sitting next to me, Ryan Phillippe, is a Hidden 
Heroes Ambassador. Ryan is an award-winning actor and star of 
USA Network's ``Shooter,'' where he plays the role of military 
veteran Bob Lee Swagger. More significantly, Ryan has close 
family ties to the military community, and he has become a 
passionate advocate for our caregivers. My heartfelt thanks to 
you, Ryan.
    You know, they stopped production. He flew in, got here 
this morning on a red eye, and tonight he will head back to 
California on another red eye. God bless you, Ryan.
    As you listen to Ryan and our other panelists, I urge you 
to consider taking two actions after today's hearing:
    First, please make the bipartisan Military and Veteran 
Caregiver Services Improvement Act the law of the land. This 
bill will expand essential services for caregivers of all eras. 
It will also provide direct assistance with some of the top 
challenges that military caregivers face every day, including 
respite, child care, financial advice, legal counseling, and 
education. I have with me a letter signed by 43 Hidden Heroes 
partner organizations. In fact, they are all right here behind 
me, and they urgently hope that this particular life-changing 
legislation is going to pass.
    Our second ask for today is that Congress invest in the 
critical research necessary to sustain positive outcomes for 
our caregivers in the coming years.
    In the next panel, you will hear from Terri Tanielian, of 
RAND, who will unveil a blueprint focused on identifying urgent 
research priorities. We urge you to listen carefully and 
champion this research, which is critical to our ability to 
support military caregivers 5, 10, 20 years down the road.
    And I have to tell you, based on what we already know, we 
expect more alarming issues to be uncovered. Anecdotally, we 
are hearing more about caregiver substance abuse and caregiver 
suicide. Marriages between veterans and caregivers are more 
vulnerable than ever. The strain of the urgent challenges now 
and the long road ahead is becoming too much for too many.
    Our Nation has long admired and respected our military men 
and women who have served our country so valiantly. And we have 
always reserved a special honor for those who returned from 
service with physical and emotional scars.
    Our goal now is an America where their caregivers are 
empowered, appreciated, and recognized for their service, an 
America where military caregivers are woven into the very 
fabric of the Nation's appreciation of our military.
    Thank you so very much.
    The Chairman. Thank you so much, Senator Dole, for your 
very eloquent and persuasive testimony.
    Mr. Phillippe.

         STATEMENT OF RYAN PHILLIPPE, ACTOR, DIRECTOR 
                           AND WRITER

    Mr. Phillippe. Thank you, Senator Dole, for the kind words.
    Before I get started, I want to take a moment in light of 
this morning's tragic events and thank the Capitol police, the 
Alexandria police, and other first responders who were able to 
assist our Members of Congress and their staff. I know I speak 
for all of us when I say that our thoughts and prayers are with 
them.
    I also know I speak for everyone here when I say to Senator 
Dole that we are truly inspired by your leadership, vision, and 
tireless work on behalf of military caregivers. You are a 
shining light on our country's hidden heroes so that we can all 
honor their service.
    And I want to thank each of you for the opportunity to be 
here today. It is truly an honor.
    My experience growing up in a military family helped 
prepare me for this role, for this moment. Both my grandfathers 
fought in World War II--one in the Pacific theater, the other 
was a Bronze Star winner for fighting on the ground in Berlin. 
My dad was in the Navy during Vietnam. My uncles were both 
Seabees and infantrymen during that same period of time. All 
the members of my family who served thankfully returned, but 
each and every one were affected in one way or another.
    I have had the opportunity as well to work with countless 
veterans and those currently enlisted on various film and 
television projects, and all of this adds to my deep respect 
for our vets and the understanding that they are our Nation's 
true heroes.
    These days, I have been recently working with the Elizabeth 
Dole Foundation, and that is how I learned about a different 
kind of hero: our military caregivers. They are hidden heroes, 
family members or friends caring for warriors who return home 
from service with physical and emotional scars. And today we 
are here to ask for your help and urge you to take action.
    And if you know anything about Senator Dole, which you 
must, she does not take no for an answer.
    [Laughter.]
    Mr. Phillippe. She will hold you accountable, she will hold 
all of us accountable, because our Nation's military and 
veteran caregivers deserve it.
    Over a lifetime of care, military caregivers face 
tremendous challenges, and right now they have very few 
resources to help them. It is on all of us to fix that.
    Right now, military caregivers are shouldering this 
responsibility of care alone. They do not expect or ask for 
help, but the work they do merits more than just a display of 
gratitude. We owe our military and veteran caregivers 
purposeful action and lifelong support.
    Something struck me in Senator Dole's remarks I want to 
emphasize. The foundation's research found that military 
caregivers play an essential role in the recovery process of 
our veterans and in improving their quality of life.
    And I quote, ``The best chance for a wounded warrior to 
recover and thrive is having a strong, well-supported 
caregiver.''
    Yet this role imposes a substantial physical, emotional, 
and financial toll on the caregivers and their families. We can 
do better.
    And that is why we are here. We need to sign into law some 
very important legislation.
    For starters, I am speaking specifically about the recently 
reintroduced Military and Veteran Caregiver Services 
Improvement Act--bipartisan legislation, introduced in both the 
House and Senate, to make expanded resources available to 
military and veteran caregivers of all eras.
    This bill strengthens and expands vital programs that 
support caregivers nationwide and ensures that caregivers are 
recognized for their service in tangible ways.
    For example, if passed, pre-9/11 military caregivers would 
have the same support we give to our post-9/11 caregivers. I 
mean, Bob Dole served before 9/11. We are talking about 
caregivers for the heroes who served with him and the 
generations that followed. Their caregivers not only need but 
deserve our assistance.
    The VA's Caregiver Program should be available to all 
caregivers caring for all veterans, regardless of when they 
served.
    The bill also supports caregivers for veterans with 
service-related invisible injuries, like TBI and PTS, in the 
same way we help caregivers with veterans who have visible 
wounds. It should not matter whether we see the scar or not to 
give our veterans and the caregivers the resources they need.
    It also provides assistance with child care, financial 
advice, legal counseling, and education, which are all top, and 
currently unmet, needs. Ultimately, by signing onto this bill, 
you will have a positive impact on the health and well-being of 
our Nation's veterans and military families for a long time to 
come.
    As a Hidden Heroes Ambassador, I have had the privilege to 
meet with military caregivers across the country. And as I 
speak before you now, I cannot help but think about Megan and 
her husband, Matt, a Marine Corps veteran who honorably served 
two tours in Iraq. Megan and Matt are high school sweethearts, 
and when you meet them, you know it. They live in Connecticut 
now. They are a young couple. They are in love. Yet they have a 
long road ahead of them.
    As a result of injuries received during his combat service, 
Matt now suffers from a traumatic brain injury and PTS. Megan, 
his wife and primary caregiver, is by his side every day, 
helping him as he struggles with wounds that we cannot see, 
invisible wounds that most of us in this room cannot imagine.
    Megan explained to me that she never pictured herself as a 
caregiver for her husband, especially so soon into her 
marriage, but Matt needs her. It is a day-in, day-out, 24/7 
responsibility, managing doctor appointments, juggling 
medications, always on high alert looking out for things that 
might trigger Matt's PTS, and all, I might add, while raising 
three young boys.
    Megan is making the most of things, but she needs our help. 
In fact, there are 5.5 million military caregivers like Megan, 
quietly serving in communities across America. And they can no 
longer go it alone. They need us, and they need you.
    I ask you again, members of the Committee, and all of you 
here today to give your full support to the military caregivers 
serving our Nation. Senators, please sign onto the Military 
Caregiver Services Improvement Act and each of the pieces of 
legislation outlined.
    To everyone here today and watching across the country, 
please seek out military caregivers in your cities and towns, 
direct them to support and resources at HiddenHeroes.org, and 
ask how you can help.
    Thank you.
    The Chairman. Thank you very much for your testimony, and 
thank you also for your thoughtful acknowledgment of the 
bravery and extraordinary courage of the two Capitol Hill 
police officers this morning during the attack that stunned and 
has saddened all of us. Without their bravery, the injuries 
would have been far, far worse. We heard at our Republican 
lunch today a firsthand account from one of the Senators who 
was present, and it is very clear that without the two police 
officers putting their own lives in harm's way--and, indeed, 
both of them were wounded--there would have been deaths as well 
as injuries resulting from this attack. So thank you very much 
for acknowledging our law enforcement and first responders.
    Senator Dole, you mentioned two very important priorities. 
One is removing the disparity in the essential services that 
are provided so that it does not matter when you served your 
country. And second was the need to continue with critical 
research. Could you elaborate on the second area of the 
critical research? We are finding out that there are more 
connections between certain diseases and military service, such 
as ALS, than we ever realized. And if you could discuss that 
priority a little more, that would be helpful.
    Senator Dole. Right. And I am so pleased that Terri 
Tanielian of the RAND Corporation, who is one of the 
researchers in the 2014 RAND report from which so much else has 
flowed, is going to be here to testify in a little while.
    Let me just start with that 2014 report because this was 
the first national, comprehensive, evidence-based research that 
has ever been done on this population, military and veteran 
caregivers. And the RAND report illustrated a number of areas 
where there were gaps in services. And the legislation that we 
are focused on today, the Military and Veteran Caregiver 
Services Improvement Act, picks up on those gaps, and that is 
why we are so anxious to see that pass, because RAND has 
pointed out through their important research exactly what is 
needed. Now there is legislation to provide what is needed. So 
we need to pass that legislation.
    Now let us look down the road. So many of our caregivers 
are very young. They are in their 20s and their 30s, the post-
9/11 caregivers. You think about that, they literally may be 
caregivers for a long period of time. In fact, I was making a 
speech recently. One of my caregiver fellows was with me, and 
she made comments. And when she finished her remarks, she said, 
``I am 30 years old, and I will be a caregiver for the next 50 
years.''
    Now, do we know now how to prepare to support these 
caregivers 5 years down the road, 10 years, 20 years down the 
road? No, we do not. That is why this research that Terri will 
describe is so important. We need to understand. For example, 
how will the needs of a care recipient change over time? How 
does the caregiving responsibility impact the outcome on the 
caregiver? And, also, we need longitudinal research. But it is 
very important--I cannot stress enough how much we need your 
help to make sure that this research is undertaken right away, 
because once we get the results of the research that will be 
proposed today, we can then spread that to all of our partners. 
We have a national coalition of about 300 organizations, and 
there are many who will want to try to utilize that research 
along with us to try to come up with the right services to help 
these caregivers down the road.
    Right now, it is really alarming--alarming--how little we 
know about how to care for them down the road, and many of them 
will be undertaking these caregiving services for decades.
    The Chairman. Thank you.
    Mr. Phillippe, could you tell us what you have learned in 
your meetings with military caregivers? Are there certain 
lessons that you have learned or that you think we should know?
    Mr. Phillippe. I think something that really stands out to 
me in the conversation I have had is the strain on the family 
unit itself, the fact that a lot of caregivers have to put 
their lives on hold, their potential dreams, occupations they 
might have wanted to pursue, to take care of their veteran. I 
think that some of the stresses related to that full-time job 
and what it takes away from, even parenting or those sorts of 
things, that is why I think the respite aspect to this act is 
very important, giving some relief and some time off, some time 
to be your own person, and then return to your job as a 
caretaker with the required energy.
    That was something--you know, keeping families together I 
think is a big part of this act in my mind. As a father, that 
is something that is important to me. I think that there is a 
lot of stress and strains that come with dealing with these 
injuries and being a military and veteran caregiver that can be 
really disruptive potentially to a relationship, to the family 
unit. So that is something that I have heard from quite a few 
people I have sat with.
    The Chairman. Thank you.
    Senator Casey?
    Senator Casey. Thank you, Madam Chair.
    I will start with Senator Dole. Senator Dole, during your 
testimony you mentioned that caregivers to veterans from every 
era should be treated equally when it comes to the eligibility 
for VA programs like the Comprehensive Assistance for Family 
Caregivers Program. I agree with you, and I think people in 
both parties do. But it is the state of the law now that only 
caregivers from veterans who served after 9/11 are eligible for 
the Comprehensive Assistance for Family Caregivers Program.
    Since you and your organization work with caregivers for 
veterans of all eras, all conflicts, can you just describe to 
us in more detail how expanding the program would benefit those 
caregivers from pre-9/11?
    Senator Dole. Yes. The caregivers from pre-9/11 have been 
providing services for years, and they have had no 
acknowledgment. They are not acknowledged for what they are 
doing, and they are receiving very, very little in the way of 
services.
    The illnesses and the wounds and injuries of these veterans 
from earlier eras are compounded as they age by the aging 
process. So you have not only the war-related wounds, 
illnesses, and injuries, but you have the compounding of those, 
for example, the advent of ALS or Parkinson's disease, and 
certainly mobility difficulties and chronic pain, some forms of 
cancer.
    So here are these pre-9/11 caregivers dealing with all of 
this, totally unacknowledged, with very little support. And I 
think it is clear that they need to have the same kind of 
opportunities. When they have the most severe injuries that 
they are dealing with, they need to be a part of the 
Comprehensive Caregiver Program. And this would mean then that 
they have respite care. Respite is so important, because, you 
know, when you are almost burned out, how can you provide the 
best quality care for our veterans? And we are talking about 
those who have borne the battle.
    Now, our country made a sacred vow to serve those who have 
borne the battle. That is who we are talking about, the 
caregivers of these individuals, and they deserve to have the 
best possible care so that they are not depressed and facing 
immune system problems and heart problems. But that is what is 
happening now, a great deal of stress and anxiety and 
depression.
    And so it very important that we provide respite care and 
that we ensure that these caregivers are able to have, for 
example, some mental health counseling. If they are in the 
Comprehensive Program, they are going to have a stipend. They 
are also going to have health insurance if they do not have 
health insurance. It would be provided, the CHAMPVA health 
insurance. So they deserve this, and it is really unfair that 
they do not have it now. I think there is every reason to move 
quickly. And the sooner that we can get the legislation passed, 
we can begin, our community, to develop the services to meet 
these needs that are unique on the part of pre-9/11 veterans 
and their caregivers. They are unique needs, and we need to 
move quickly to tailor our programs to service those needs.
    Senator Casey. Well, I think your testimony today will help 
us move that legislation. That, I think, goes without saying, 
and we are grateful you are here.
    Senator Dole. Well, you know, may I add that we have been 
really proposing this legislation for several years. It would 
be so nice to see it passed before the end of the year, please.
    Senator Casey. Well, that is a good goal for the end of the 
year.
    Senator Dole. Okay.
    Senator Casey. Probably on most days you will be more 
persuasive than I will be, so we will need you to come back.
    In the same vein about providing the best possible care and 
coverage, I mentioned earlier about Medicaid that some 
veterans, some 900,000, because of their own circumstances, are 
covered by Medicaid. That is the coverage that they have. And I 
also mentioned there are 660,000 spouses who receive that 
benefit as well.
    Do you think that Medicaid can play a critical role in 
providing health care to veterans, their caregivers, and 
families? What is your sense of that? And I am assuming you run 
into people that have that kind of coverage.
    Senator Dole. Right. Well, we know from our caregivers who 
are enrolled in Medicaid that the program provides valuable--it 
is an extra coverage or valuable supplement for some of the 
expenses that the VA program does not cover. And then for those 
who are not on their veteran's health care plan, they would be 
under the same system as civilians. And I think the RAND report 
indicated 20 percent of military caregivers fall under the 
federal poverty line, and those particular individuals would 
find that Medicaid certainly would be one of the best options 
for their health insurance.
    Senator Casey. Thank you, Madam Chair.
    The Chairman. I am now delighted to call upon one of the 
Committee's most active members, Senator Cortez Masto.
    Senator Cortez Masto. Thank you. Thank you, Madam Chair. 
And welcome. Thank you both for being here.
    Senator Dole, thank you for everything you are doing in 
this space, and particularly addressing this important issue 
for our military caregivers. You talked about respite care, 
which is absolutely agree----
    Senator Dole. Yes.
    Senator Cortez Masto. [continuing]. It is key to really 
bringing some relief and additional services. But if you do not 
mind, talk a little bit about the isolation piece as well that 
occurs and why respite care will bring some relief.
    But there are other things that we should be doing to 
address isolation that I have seen with respect to caregivers, 
military caregivers as well.
    Senator Dole. Right. You know, it is amazing. As we have 
met with many caregivers, they really do not understand that 
they are a caregiver. And I think our earlier RAND research 
also pointed this out, that many of them do not see themselves 
as a caregiver. In other words, ``Well, I am just his mother. 
Of course, I am going to take care of him.'' ``I am the spouse. 
I am looking after my husband,'' or ``my wife.'' And so they do 
not understand that they are caregivers, and if they would just 
raise their hand, there are some resources available to them.
    And so we are trying to urge these caregivers to come out 
of the shadows and to go to--we have a state-of-the-art Web 
site. It is one of its kind that is specifically designed for 
military and veteran caregivers. They go to that Web site, 
HiddenHeroes.org. They will find a whole community of 
caregivers that they can talk to, they can compare notes, they 
can learn from one another, and there are several hundred 
carefully, carefully vetted resources on that Web site, and we 
will continue to grow those resources.
    But it is vitally important. We find that when a caregiver 
is so isolated, so alone, they do not know there are others out 
there. And they are just trying to--they are struggling trying 
to deal with everything all by themselves. And you can imagine, 
you know, think about this in a family where let us say there 
is a difficulty. It may be post traumatic stress or traumatic 
brain injury. The children in the family are having to be very 
careful as they move around; the spouse is trying to prevent 
triggers that could set off an emotional response. The kids 
cannot have children over for a sleepover. You know, it is a 
delicate situation. And they are dealing with all of this, and 
yet in most cases, they do not even realize that there are 
others they might connect with.'
    And once they connect, even with just one other person, one 
other caregiver, it is like magic. It is like a life-changing 
experience. And as we bring them together in larger numbers, I 
think they are able to support and help one another, and that 
has been one of the joys. I feel like our caregiver fellows--
and we have them from all 50 states. They are like extended 
family of mine. I consider them part of my family, you know. 
But that isolation, you are absolutely right, is such a big 
issue, and we need to bring them out of the shadows and connect 
them with others.
    And respite, you know, how can they provide the kind of 
quality care that these heroes of ours who have borne the 
battle deserve? How they can provide it if they are exhausted? 
You know, the respite is so important, and the Lifespan Respite 
Care Act is just vitally important. And we need to get that 
passed immediately so that the states can begin to tailor 
services to the caregivers.
    Senator Cortez Masto. Thank you, and so let me follow up on 
that because I absolutely agree, but here is the biggest 
challenge I also see, and let me open this up to Mr. Phillippe 
as well. How do you make them aware of the services that are 
available to them? This is the biggest challenge, the 
education, the awareness piece, how you bring that back into 
the communities.
    Senator Dole. Right.
    Senator Cortez Masto. And make sure they know that there 
are resources, number one, which is the most important, and 
then where to go to find out about it.
    Senator Dole. Yes. Let me mention Hidden Heroes Cities. 
This is something that we initiated last September, and I 
promise I will not talk too long because this is really your 
question, I think. But Hidden Heroes Cities, the idea is we now 
have 100 cities, and we continue to grow these. But we are 
reaching out to mayors and to other local leaders across the 
country, and the idea is that they will form a committee, we 
will help them to understand how to inspire caregivers in that 
local community to come forward, to identify the caregivers in 
that community. And then they will determine what resources do 
we have at the local level that can be extended to these 
caregivers and, where there are gaps in services, how can we 
fill those gaps? What is our strategy going to be? And we find 
that this is working very well as a way of reaching out to the 
caregivers.
    Also, in our national coalition, we have so many wonderful 
organizations that have chapters all across America. And, 
again, we need to reach out to them where they are, and that is 
at the local level. So we have to drive down to the local level 
what is happening.
    But I think clearly it is a matter of doing this in a 
number of different ways, also the kind of awareness campaign 
that we are involved in right now with Ryan Phillippe. He is 
doing public service announcements for us. He is going to 
events and speaking. Our caregiver fellows are speaking at 
Rotary Clubs and other local organizations, and the word is 
getting out more and more. We are trying to raise awareness in 
many different ways on many different levels.
    Senator Cortez Masto. Okay. Mr. Phillippe?
    Mr. Phillippe. One of the things that came up time and 
again talking with families was that there has been a 
frustration that the veterans' programs and support groups vary 
so much from state to state, even from city to county certain 
times. There were families that I talked to who would move to 
an area where they knew there were better facilities, better 
programs. And I think part of what Hidden Heroes would like to 
eventually implement is some sort of a national VA standard for 
how we treat our military caregivers and, therefore, our 
veterans.
    I think that as complex as that may seem, I think there is 
a way to do it. I think it just takes the right kind of people 
behind it.
    Senator Cortez Masto. I think we have got the right people 
behind it to give us that initial catalyst and push.
    Senator Dole. We need you.
    Senator Cortez Masto. Thank you. Thank you very much.
    Senator Dole. Thank you.
    The Chairman. Thank you, Senator.
    I was going to move to the next panel, but it is my 
understanding that Senator Warren is on her way, and since we 
know how to filibuster, we will----
    [Laughter.]
    The Chairman. We will go on a little more until she 
arrives. And there was actually a question that I wanted to ask 
you, Senator Dole, and that is, have you found that there is a 
difference in the needs of military caregivers versus civilian 
caregivers? I do not know whether that is something that you 
have looked into, but I was curious, if you have, whether you 
found a difference.
    Senator Dole. Well, the RAND report has told us that the 
military and veteran caregivers are experiencing a much higher 
rate of negative health consequences as a result of their 
caregiving services. They are experiencing these incredible 
difficulties in terms of anxiety and depression and immune 
system problems. And, you know, I think that is something where 
we come back to the respite. It is so very important to give 
them a chance to just break away a little bit and to be able to 
recharge their batteries.
    But I think that the RAISE Family Caregiver Act is also 
very important, and I know that you are sponsoring that, and it 
is important because it will provide for coordinating services 
across the Government in a way that makes them more efficient, 
the caregiving services. And we believe strongly in the need to 
coordinate between the VA, the DOD, the Department of Labor, 
HHS, and others that are involved in any way in caregiving. And 
it also will provide best practices and lessons learned that 
can be utilized by the military and veteran community, 
caregiver community. And anytime that you can spotlight what is 
going on, the labor of love that is taking place in these 
homes, anytime we can spotlight that it is a wonderful thing to 
do.
    So I hope that that piece of legislation is going to pass 
because if we want to foster a Nation that supports hidden 
heroes, all hidden heroes, these wonderful caregivers, then it 
is important to pass both pieces of legislation.
    The Chairman. Thank you.
    Senator Warren?
    Senator Warren. Thank you, Madam Chair, and thank you all 
for being here with us today, and especially thank you to the 
caregivers and their veteran spouses who are able to join us 
today.
    You know, Senator Dole, I want to say thank you for coming 
to see me earlier this year in order to tell me about the 
support that caregivers provide every day to wounded or ill 
veterans and servicemembers. Your foundation conducts a fellows 
program in which caregivers are selected to advocate for 
caregivers and ensure that they have the resources that they 
need. And one of those caregivers, Emery Popoloski, is sitting 
right here in the front row. She is a former fellow and is from 
Massachusetts. And not only does she care for her husband, 
Charlie, who served in the Army, she actually helps manage the 
caregiver fellows program, and she is here today, and I just 
want to say a very public thank you to Emery. Thank you for 
being here, Emery.
    You know, I am reminded, though, by Emery's being here that 
caregivers often need additional support for traveling to 
various appointments, child care services, mental health 
counseling, and other resources. And current law authorizes the 
VA to directly provide a stipend and other support services to 
caregivers of injured veterans from the wars of Iraq and 
Afghanistan, but does not authorize the agency to provide this 
direct additional support to caregivers of veterans from pre-9/
11 wars. This seems wrong, particularly because elderly 
veterans are a potentially vulnerable group.
    Now, Senator Dole, I know that you addressed this in your 
testimony, but this is really important, so I want to come back 
and underline here. When it comes to providing additional 
support services directly to caregivers, what are the 
consequences of classifying caregivers of veterans from post-9/
11 wars separately from caregivers of veterans of earlier wars?
    Senator Dole. It is a very unfair situation. We need the 
legislation we are focused on today so that as soon as possible 
we can begin to meet the very unique needs of the pre-9/11 
servicemembers and their caregivers. And it is so frustrating 
to me because these caregivers pre-9/11 have been providing 
services for years with no acknowledgment, without anyone 
really acknowledging the great work and services that they are 
providing and without the resources to be able to provide some 
respite care for them, an opportunity to have a stipend, which 
can be very helpful to them. They deserve to have the same 
benefits that post-9/11 veterans do when they are dealing with 
the most serious injuries, illnesses, and wounds, not only 
those war-related wounds but how they have been compounded by 
the aging process, which means that now you have the advent of 
things like Parkinson's and ALS and some cancers, plus just all 
the things that happen as you get older. You are less mobile, 
and you have more pain, and they are dealing with all of this 
without the support that they absolutely deserve.
    So I am hoping that this legislation really could be passed 
quickly before the end of the year so that we can begin to 
really focus on the kinds of services that they need. The 
faster it is passed, the quicker all this community can begin 
to provide services addressed to those particular individuals.
    Senator Warren. Well, I know that Chairwoman Collins and 
Senator Murray have introduced a bill on this, and I just want 
to say I am with you. I really hope this goes forward, and goes 
forward as soon as possible.
    I also want to ask another question. I know that some 
caregivers of elderly veterans requiring long-term, in-home, 
personal care can qualify for VA's aid and attendance benefit. 
But I also know that some scam artists have targeted veterans 
by charging them fees for obtaining this benefit even though 
the application is free.
    Senator Rubio and I also have a bill that would direct the 
VA to work with other federal agencies to crack down on these 
scams because I think it is just really important here.
    If I can, I want to hit one more point, and then if the 
Chair will indulge me for just a minute here. I come from a 
military family. All three of my brothers served. But that is 
not as common as it used to be. America has the world's best 
fighting force, but many people in our country no longer have a 
personal connection to our military. And as a result, they 
often do not know about the sacrifices of either the 
servicemember or the sacrifices of their caregivers.
    Senator Dole, do you think that the sense of isolation felt 
by some military and veteran caregivers is a reflection of a 
broader divide between ordinary citizens and our military? And 
do you just have a few thoughts you might give us--I am really 
out of time here, but a few thoughts you might give us about 
how we help heal that divide?
    Senator Dole. Yes. I think that the isolation does--you are 
right on point on this, no question about it. You know, when 
you realize that less than 1 percent are serving today 
defending our freedom and our security, most Americans have no 
idea what is going on in military homes today. And it is 
amazing. We have done an outreach to a number of organizations 
as we put together our national coalition. And whether we are 
talking with people in government or nonprofit organizations or 
we are talking with business leaders, maybe it is the faith 
community, often I hear, ``I had no idea. What can we do to 
help?''
    And there has been such an outpouring from this whole group 
that we have got this wonderful coalition, but there is no 
question that people just do not--you know, they do not know 
what is happening in the homes, so how are we going to address 
that?
    Well, one of the major goals of my foundation is raising 
awareness, and thanks to Ryan, he is helping us to raise 
awareness with the public service announcements, with the 
events that he attends, and working with our caregiver fellows 
and caregivers across America, meeting with them. And certainly 
the Hidden Heroes Campaign, the Hidden Heroes Cities, all of 
that is designed to raise awareness, to be able to help people 
to understand we need their support across the country.
    Hidden Heroes Cities is an example of driving down to the 
local level the concern for finding and identifying caregivers, 
and we have a lot of mayors and their teams working across 
America to raise awareness, to find the caregivers and lead 
them to the kind of support that we can give them.
    Senator Warren. Well, thank you again. Thank you for all 
you are both doing. We appreciate it.
    Senator Dole. Thank you.
    Senator Warren. Thank you, Madam Chair.
    The Chairman. Thank you.
    Senator Casey?
    Senator Casey. Yes, I know we have to wrap up soon, but, 
Mr. Phillippe, I wanted to ask you a question about your own 
interaction with veterans and their families. You mentioned in 
your testimony your own family background and also the time you 
have spent with people like Megan and Matt, living in 
Connecticut. What can you tell us about any kind of common 
themes that you hear or things that we should be aware of that 
veterans and their caregivers raise? Anything you can share 
with us about concerns they have or maybe some issues that we 
did not cover today?
    Mr. Phillippe. Yeah, I mean, what comes to mind immediately 
when you ask that is the idea of how unprepared some of our 
caregivers are for the role that they are immediately inserted 
into, the lack of education and training that goes along with 
having someone be prepared to take care of a disabled vet. I 
feel like that is something that can also be addressed. There 
is a bit of that in the bill about even helping with financial 
aid, having these families that now have extra costs because 
only one can work, or maybe not at all if they have a 24/7 job 
taking care of their vet. And so figuring out how to readjust 
their finances and to also allow for support for the children 
even and understanding, okay, you know, mom or dad is having 
this issue and we have to be gentle for this reason. It is not 
always the easiest thing to convey to someone who is young. A 
lot of these caregiver men and women are young and have not had 
the life experience or the actual physical training experience 
that a lot of nurses have in other capacities. So I think that 
is a big part of it.
    And what I always come back to is if we do not help our 
caregivers, what happens to our veterans? And when something 
happens to our veterans, that shame is something that we all 
share. And you see the rates of self-harm, the rates of drug 
and alcohol abuse go up when a veteran is left alone, when the 
marriage does not work, when their caregiver cannot handle it 
anymore. And I think it is up to us to offset those stresses 
and to try to keep those families together and to keep our vets 
healthy.
    Senator Casey. Thank you very much.
    The Chairman. Senator Cortez Masto? I just wanted to give 
you a chance. Thank you.
    I want to thank this panel for your truly compelling 
testimony. When Senator Dole first came to see me, it was after 
Senator Bob Dole had had a very rough year and had been in 
Walter Reed virtually the entire year. And I remember how 
impressed I was that rather than focusing just on her own 
situation, she told me of the stories of the veterans and their 
family members whom she had met at Walter Reed. And I know that 
is what inspired you to get involved in this. And it is so 
typical of the selfless service that you have given to your 
Nation your whole life, and I am very grateful for your raising 
public awareness of something that we truly need to act on.
    Senator Dole. Thank you.
    The Chairman. And, Mr. Phillippe, thank you for making such 
an effort, especially when I learned that you took the red eye 
here and the red eye back.
    Mr. Phillippe. It is worth it.
    The Chairman. I know how brutal that is. But I was not 
surprised when you said that you could not say no to Elizabeth 
Dole because all of us have found that to be the case, which is 
why I am co-chair of the Hidden Heroes Caucus today.
    [Laughter.]
    The Chairman. But it is indeed a worthy cause, and we do 
need to eliminate this disparity. I see in my own family where 
my mother for the last 8 years--my mother is 90 years old--has 
taken care of my now 91-year-old father, who is a World War II 
veteran who was wounded twice in the Battle of the Bulge, 
earned two Purple Hearts and a Bronze Star. And trying to get 
respite care is just so difficult.
    And I think that is the number one challenge. I really do.
    My mother has been extraordinary in doing that for 8 years, 
but as you both have pointed out, we now have Iraq and 
Afghanistan veterans whose loved ones may be in the caregiver 
role for 50 years, and we need to do a far better job of giving 
them the support that those who have borne the battle have 
earned.
    So thank you very much for being here today and for sharing 
your advice and guidance with us. Thank you.
    Senator Dole. Thank you so much.
    The Chairman. I now want to call up our second panel of 
witnesses.
    [Pause.]
    The Chairman. And while you are getting settled, I will 
note that we have two service dogs with us today who I know are 
very important to the veterans and their families who are here. 
I would invite them to testify as well if I could figure out 
how. I know how smart they are, that is for sure. Thank you.
    First on this panel, I would like to introduce Ms. Terri 
Tanielian. Ms. Tanielian is the senior behavioral scientist for 
the RAND Corporation and former director of the RAND Center for 
Military Health Policy Research. She has led numerous studies 
examining the needs of veterans and their families and co-
directed the RAND Corporation's 2014 study, ``Hidden Heroes: 
America's Military Caregivers.'' Ms. Tanielian--I hope I am 
saying that right--co-directed RAND's newest study on military 
caregivers called ``Improving Support for America's Hidden 
Heroes: A Research Blueprint,'' which is being released today.
    Senator Tillis mentioned our distinguished witnesses from 
North Carolina, but let me give a little reminder. We are going 
to be hearing from Mary and Thomas Ward, both of whom will 
testify today. Mrs. Ward is a 2016 Elizabeth Dole Fellow and a 
caregiver to her husband, a pre-9/11 Marine Corps veteran who 
lives with service-connected ALS. I thank you both for your 
service, and I look forward to your testimony today. And thank 
you for being here.
    We will next hear from two individuals from the great State 
of Maine--from Levant, Maine, to be specific--Melanie and 
Sergeant First Class Joe--everybody has a hard name today--
Swoboda. Got it right. Mrs. Swoboda is a 2016 Elizabeth Dole 
Fellow and a caregiver to her husband, a post-9/11 veteran who 
served in the Army for 18 years, including three tours in Iraq. 
Mrs. Swoboda has been her husband's caretaker for more than 10 
years and helps him with his physical injuries and post 
traumatic stress syndrome. In addition, Mrs. Swoboda has a 
degree in education and has taught in the military community 
for more than 15 years, so I thank you both for your service 
and look forward to hearing your testimony.
    And I would now like to ask our Ranking Member to introduce 
his witnesses.
    Senator Casey. Thank you, Chairman Collins. It is my 
pleasure to introduce our witnesses from Alum Bank, 
Pennsylvania, Sergeant Samuel Ickes and Wanda. Sergeant, we are 
grateful to you for your many years of service to our country 
in the Army in Panama, Iraq, and Afghanistan. I am also pleased 
to welcome your wife, Wanda, to the hearing today, and it was a 
pleasure to meet both of you today.
    Wanda is a hero in her own right, a hidden hero, as Senator 
Dole would tell us. In addition to being a caregiver for her 
husband, Wanda is a full-time student at the University of 
Pittsburgh at Johnstown and a Dole Caregiver Fellow. Thank you 
for your family's service to our country, and thank you for 
being here with us today at the hearing.
    The Chairman. And I add my thanks as well.
    We will start with Ms. Tanielian.

     STATEMENT OF TERRI TANIELIAN, M.A., SENIOR BEHAVIORAL 
                  SCIENTIST, RAND CORPORATION

    Ms. Tanielian. Thank you, Chairman Collins, Ranking Member 
Casey, and distinguished Committee members. My name is Terri 
Tanielian, and I am a senior scientist at the RAND Corporation, 
where I study the health and well-being of servicemembers, 
veterans, their families, and their caregivers.
    Many of our Nation's 20 million veterans have conditions or 
disabilities that require ongoing care. Supporting these 
veterans is a cadre of spouses, parents, and friends who 
provide unpaid, informal support with activities that enable 
them to live fuller lives.
    With the support of the Elizabeth Dole Foundation, I have 
led three sequential studies focused on this important 
population. Our 2014 study, which you heard about today, 
``Hidden Heroes,'' provided the first in-depth picture of 
military and veteran caregivers. It estimated the value they 
contribute to our society and exposed the risks they face as a 
result of their roles. Four of the study's findings were of 
particular surprise.
    First, of the 5.5 million military caregivers, 20 percent, 
or 1.1 million, were supporting an individual who served after 
September 11th.
    Second, post-9/11 caregivers are different than pre-9/11 
caregivers. They are younger, more likely to be spouses, and 
more likely to be in the labor force, which means they are 
working and providing care to a veteran.
    Third, post-9/11 caregivers were ineligible for many 
support programs because of their age, relationship to, or the 
condition of their care recipient.
    Fourth, we found significant threats to the future of 
military caregiving, especially as parents who are serving as 
caregivers are aging themselves and may soon be unable to fill 
those caregiving duties.
    Our newest report is a research blueprint designed to 
ensure better support for military and veteran caregivers. This 
blueprint was informed by input from more than 175 
stakeholders, including policy and program officials, 
researchers, clinicians, philanthropists, advocates, care 
recipients, and caregivers themselves. We generated consensus 
around ten high-priority research objectives, all of which are 
outlined in my written testimony. Today, however, I will focus 
on four that underscore the need for longitudinal research that 
will track these issues over time.
    One priority that we identified is to study how caregiving 
affects caregivers. Such research could help inform programs 
and policies designed to mitigate any adverse effects of 
caregiving, particularly with regard to mental health, 
employment, and family well-being.
    A second priority is to examine how caregiving affects the 
children of caregivers. No research has yet documented the 
effect of caregiving on children, though most stakeholders 
consider this to be a vital topic. Such studies should focus on 
the impact that caregiving has on parenting as well as the 
short- and long-term effects on children who serve as 
caregivers themselves.
    A third priority is to examine how care recipients needs 
change over time. As individuals age or recover from their 
injuries, their needs and demands for caregiving will change, 
and this may affect the duties and strain on the caregiver.
    The fourth priority for research is to assess how programs 
and policies impact caregiver well-being. We know very little 
about the impact of current programs on military caregiver 
outcomes, yet knowing what works and for whom is an important 
consideration for developing sound policies and funding worthy 
efforts.
    To conduct studies designed to fulfill the blueprint we 
released today, a number of conditions must be met. Members of 
the Senate can take critical steps to facilitate an environment 
conducive to research on military caregivers. This means 
providing adequate and sustained funding as well as requiring 
research for decision making when making decisions about the 
future of caregiver support programs.
    Our report also outlines several potential strategies for 
using this blueprint, including creating a research center of 
excellence specifically focused on military and veteran 
caregivers. It will be important for such a center to have 
multidisciplinary expertise as well as a broad focus to ensure 
that all of the outlined research objectives and special 
populations that are of importance to the veteran caregiving 
community are included in its mission.
    I will conclude by reiterating that the role of our 
blueprint is to convey a vision for future investments in 
research that will lead to improved support for military and 
veteran caregivers. Thank you for the opportunity to share this 
testimony with the Committee, and I look forward to your 
questions.
    The Chairman. Thank you very much.
    I would now like to call upon the Wards to testify. Thank 
you. Mrs. Ward.

 STATEMENT OF MARY WARD AND THOMAS WARD, VETERAN CAREGIVER AND 
                            VETERAN

    Ms. Ward. Good afternoon, and thank you, Chairman Collins 
and Ranking Member Casey, for inviting me and my husband, Tom, 
to this hearing on military and veteran caregivers. I am 
humbled to be here alongside a force of nature like Senator 
Dole, an advocate like Ryan Phillippe, an expert like Terri 
Tanielian, and my peers.
    I became a Dole Caregiver Fellow in 2016, but my journey as 
a caregiver started long before then. On June 21, 2010, Tom was 
diagnosed with ALS. Prior to that, in 1993, Tom had been 
disabled from encephalitis. He has required care from me since 
then, but the all-encompassing care of ALS is intense.
    I had his care figured out and organized until ALS came 
along. It is a devastating diagnosis--excuse me--but for me it 
was like getting sucker punched. Tom and I are that couple that 
fell in love almost instantly in 1979, and my grief has known 
no bounds. I know how this disease works. It will steal his 
life, and if I am not careful it will take mine as well. The 
work ahead as his caregiver is daunting at best. I am certain 
that I am not up to the task alone, yet for the most part I 
know I will have to be.
    In 2008, ALS was made a presumptive illness for veterans. 
Veterans are twice as likely to get ALS as non-veterans, and 
more than 4,500 veterans at a given time have ALS. Tom served 
in the U.S. Marine Corps from 1972 to 1975 so he qualified for 
benefits, and enter the VA into our lives.
    I had not considered myself Tom's caregiver until later in 
my life. I was committed to our vows and love for each other. A 
caregiver to me meant someone who was paid to come in and 
provide services. In 2013, I saw an interview with Senator 
Elizabeth Dole about caregivers, and that was my epiphany that 
I was a caregiver.
    ALS is a catastrophic disease, physically, emotionally, and 
financially. There is never a day that goes by that I am not 
grateful for all the VA does to support Tom as he battles ALS. 
The challenge lies in ensuring that he gets what he needs in a 
timely fashion: the correct breathing mask, medications, 
equipment, and so on. And while I work on managing resources 
available from the VA, at the same time I am taking care of Tom 
and teaching Advanced Placement U.S. Government and Politics 
online. Tom's need for assistance is non-stop. He is moving 
towards dependence rather than independence, and that is never 
going to change.
    One huge worry I have is the financial aspect of my future. 
I teach high school online so I can care for Tom but have done 
so at a significant salary reduction which has impacted my 
future retirement funds. I save diligently, but I am deeply 
concerned that as his dependence grows I will need to pay for 
assistance out of pocket as the VA will only provide 28 hours 
of care a week, and that will never be enough if Tom lives to 
full paralysis.
    We have two adult children who cannot assist in their dad's 
care. Our daughter is a second grade teacher in Charlotte. Our 
son is a sergeant first class with 14 years in the Army and 
currently a drill sergeant. Their dad is their hero and would 
help in a heartbeat if it was possible. The best thing they can 
do is to continue to grow their careers; that is the kind of 
help we want from them.
    Being a foundation fellow has been life changing for me. I 
have developed lifelong friendships with other fellows. Senator 
Elizabeth Dole has encouraged us to be ``solutionists,'' and so 
we are, with each other and with other caregivers.
    As a pre-9/11 caregiver, the VA offers me almost nothing. I 
receive no caregiver training from the VA, no stipend, no 
support other than a monthly national call with focused topics, 
and a few months ago was denied respite hours.
    I am one voice among many who need consistent and 
compassionate help as we carry this heavy responsibility caring 
for our veteran. And there is still so much that we do not 
know. We need to cultivate a better understanding of the needs 
of caregivers through research like the kind you heard about 
from Terri. And we need action. I hope you will consider 
passing the Military and Veteran Caregiver Services Improvement 
Act to help caregivers like me.
    Thank you for your time and consideration today. I welcome 
your questions for myself and my husband, Tom.
    The Chairman. Thank you so much, Mrs. Ward, for your very 
moving testimony. I cannot imagine anyone having listened to 
what you just said voting against our bill. So I hope that we 
can spread your testimony widely, and I really thank you for 
being here today.
    Mrs. Swoboda.

STATEMENT OF MELANIE SWOBODA AND JOE SWOBODA, VETERAN CAREGIVER 
                          AND VETERAN

    Ms. Swoboda. Good afternoon, Senators, and thank you, 
Chairman Collins and Ranking Member Casey, for having Joe and I 
at this hearing on military and veteran caregivers.
    My husband, retired Sergeant First Class Joseph Swoboda, is 
a three-time combat veteran of Operation Iraqi Freedom. He was 
deployed during the initial invasion in 2003, again in 2005, 
and again in 2007. Each time, the deployments were longer and 
longer. In 2003, he left for 8 months, in 2005 for 12 months, 
and in 2007, Joe was overseas for approximately 15 months.
    During the initial invasion and again in 2005, Joe 
sustained injuries in two explosions, in one of which he lost 
consciousness. However, because of the intensity of the 
fighting, there was no time for him to be checked by medics, so 
he shook it off and remained in the battle. Years later, the 
injuries he sustained would become impossible to ignore.
    This several-year period of rapid deployments was a 
whirlwind. Even when Joe was home, he was not home. When he was 
not at war, he was training for war in field exercises, so 
there was no time to recognize he was having any mental health 
or neurological issues. He had to push through it, as did I.
    After the third deployment, Joe asked to be given an 
assignment where he could train without being deployed. 
However, when he stopped going to combat, that was when the 
problems really started, when we finally had the opportunity to 
slow down, and these difficulties he was having started coming 
to light.
    I knew he was struggling. He was home, but he had never 
really come back from Iraq. A fellow soldier, who was also a 
trusted friend, saw his struggle, too, and thankfully insisted 
that Joe seek help for the overwhelming symptoms he was 
experiencing as a result of his traumatic brain injuries and 
post traumatic stress. The invisibility of his wounds meant 
most in the Army had never recognized Joe as being injured.
    Once these symptoms began to affect his work, Joe was 
medically retired from the Army, and during his out-processing, 
a staff member at Fort Benning handed me an application for the 
VA Caregiver Program. I filled out the paperwork, but I was not 
really sure what I was applying for. Of course, even when Joe 
had still been active duty, I was his caregiver, but I had 
never recognized it. All of the tasks I was doing were the ones 
you will hear any caregiver talk about: I was managing his 
medications, I was raising the kids alone, I was managing 
finances, and I was helping him remember things that he could 
no longer remember.
    I love my husband, and I would absolutely care for him 
regardless, but having caregiver support programs in place is 
so important to me because for the first time in 20 years, I 
can breathe. I cannot imagine how much harder this would be 
without those programs, but I know millions of caregivers 
manage every single day.
    It is still stressful, there is still a lot I have to do, 
but having the financial support of receiving a stipend and the 
opportunity for respite care has been crucial for my family.
    There are days when I think I cannot go on like this, I 
cannot have this much stress and pressure on me. And it is not 
just the stress on me. I also see how the stress of caregiving 
affects our children, too. Respite services, though, give us 
all an opportunity to recharge.
    Support systems like the Dole Caregiver Fellowship, with 
the network of knowledgeable caregivers who can help answer so 
many questions and programs offered by the VA such as the 
Caregiver Support Program make this sustainable for me and for 
so many other caregivers.
    This kind of support should be available to all military 
and veteran caregivers, whatever era their veteran served. It 
is really helping people. It is really making a difference. I 
hope that you will consider supporting and passing the Military 
and Veteran Caregiver Services Improvement Act to do just that.
    Thank you so much for your time this afternoon. I look 
forward to answering any questions you may have.
    The Chairman. Thank you so much, Mrs. Swoboda, for sharing 
your story with our Committee.
    Mrs. Ickes.

 STATEMENT OF WANDA ICKES AND SAMUEL ICKES, VETERAN CAREGIVER 
                          AND VETERAN

    Ms. Ickes. Thank you, Chairman Collins and Ranking Member 
Casey, for inviting my husband and I here today to testify. I 
would also like to thank the Elizabeth Dole Foundation and 
Senator Dole, Ryan Phillippe, and Terri Tanielian for taking 
the time to be here today. It is humbling to have voices like 
theirs speak on behalf of caregivers like myself.
    It is my hope that by sharing a small part of my journey as 
a caregiver with this Committee that you can ensure future 
caregivers do not face the same hurdles that my husband and I--
and other caregivers--have had to overcome.
    My husband, Sam, had been married to the Army long before 
he married me. In the 1980s, he was an Army Ranger in Panama in 
Operation Just Cause, though he still saw action with the 3rd 
Ranger Battalion. That is when he suffered his first TBI. 
Later, he was in a bad accident that got a lot of metal put in 
his body, so much that the Army said he could not perform his 
duties anymore and released him.
    After 9/11, he couldn't not do the job the Army trained him 
to do. He went and got every waiver he needed so he could go 
back into the Reserves as an MP, a military police officer. He 
signed up for every single deployment. He was deployed more 
than he was not. Over the course of those deployments, Sam 
earned three Purple Hearts. He did his job. He brought every 
single person back alive. He went above and beyond his duty.
    Sam came back from his deployments looking like the same 
person, but he did not come back acting like the same person. 
When you meet him, when you speak to him for a few minutes, he 
looks like everybody else. Talk to him a little bit longer, and 
you can see his issues in his eyes, in the way he talks. Sam 
undeniably still lives with the effects of the war.
    One day, when Sam was home on leave from his deployment, he 
had gone into the backyard to grill dinner. After he was gone 
for a while, longer than dinner should have taken, I glanced 
out the window and saw flames lapping at the side of the house. 
I did not hear Sam doing anything about it. I ran outside and 
saw that he was just standing there, wide-eyed, staring at the 
fire eating away at our house. I pushed him away and closed the 
grill to put out the fire, and that is when I realized he had 
some serious issues. That is when I realized that he would need 
more help, a little extra help. But the Army did not see it 
that way.
    When he came back from his last deployment, where he 
suffered his last major TBI, the Army released him and said he 
was healthy enough to go back to civilian life. In the 60 days 
of leave that he had earned between leaving the military and 
going back to his old job, I began noticing more of the little 
things that were different about him. He was stuttering, he 
could not process things, his memory was terrible. He was very 
distant.
    I took him to the VA, and I pushed the issue. Sam was not 
the same person. The more I talked about the issues he was 
having, the more the doctors realized I was right. But I had to 
write to the Senator to get the Army doctors to reevaluate him 
so he could be given the right benefits from the military, the 
ones that he had earned.
    It should not have been that difficult. The Army should 
have sent him back to civilian life--I am sorry. The Army was 
going to send him back to civilian life and he could not hold a 
job. He could have ended up homeless, or worse. I could not and 
would not let that happen. I had to figure out everything out 
on my own. I had to make it right for him and for us. When he 
came back with his issues, I stepped up because he could not. I 
took control because he could not. And I became his caregiver.
    When we had access to the VA Caregiver Program, it was very 
good to us. It allowed me to have respite time as a caregiver, 
to have the down time and respite time that I could focus on 
me. And that stipend, you cannot put a dollar sign on it.
    As you consider how to improve the lives of caregivers, 
know that the Military and Veteran Caregiver Services 
Improvement Act makes important strides in improving 
coordination between the Department of Defense and the VA when 
servicemembers are transitioning into civilian life and in 
extending a priceless stipend to so many caregivers and 
veterans in need. Those are certainly policies that would have 
helped Sam and I as we figured out our new life. I hope you 
will support this legislation and help ensure it to be signed 
into law.
    Thank you for allowing me this opportunity to share, and I 
look forward to your questions.
    The Chairman. Thank you so much for your testimony, and I 
want to thank all of you for being here today and sharing your 
personal stories with us. It really makes a difference.
    You know, a lot of times we talk about numbers here in the 
Senate, and we talk about, for example, that there are 5.5 
million military caregivers. But when you put a human face on 
it and you hear the individual stories, it makes such a 
difference. It makes it so real.
    Let me go across, starting with the Wards and then the 
Swobodas and then the Ickeses, and ask a question of all of 
you. I often hear that caregivers are very reluctant to ask for 
help or support, and, Mary and Melanie, it sounds like in your 
case you did not think of yourselves as caregivers initially, 
as being that role. Others may be just hesitant to ask for 
help, and many simply are unaware of what help there is out 
there, although I think we would all agree it is not adequate 
and it is not fair that there is this disparity.
    But I would ask, starting with you, Mrs. Ward, how can we 
better help military caregivers overcome the barriers of their 
own willingness to accept help?
    Ms. Ward. So, well, for me personally, I think I would have 
needed somebody to ask me to have some help, which is probably 
true of many other caregivers. I think I am just one of many 
when it comes to that.
    I think for us, getting a diagnosis of ALS meant an 
enormous amount of stress and work in the future, work for me, 
and I probably would have really benefitted by having somebody 
reach out to me, maybe even separate from Tom. I think it is 
very difficult to be the care recipient and hear the kind of 
stress it will be for their caregiver, because they are not a 
burden but it could feel like a burden. And I think it would 
really be okay if we had somebody take us aside and speak with 
us and be available for us for questions and to kind of help us 
brush ourselves off and get moving in the direction that we 
need to, to still try to have the best life that we can.
    The Chairman. Thank you.
    Melanie?
    Ms. Swoboda. I think it would have been helpful to me to 
have had more education about caregiving during my husband's 
Med Board process. During this process there are many briefings 
that are held to help the soldier transition out of the 
military. So I think that having--and it could be very simple 
as training someone who is already giving briefings about other 
aspects of out-processing, to present information to potential 
caregivers.
    Much of the information I have learned along the way came 
from social media outlets, and organizations like the Elizabeth 
Dole Foundation are definitely leading the way in disseminating 
information and, more importantly, helping caregivers to self-
identify.
    But I agree with you, Senator, that it is difficult for us 
who love our spouses so much to identify as caregiving because 
we do it because in sickness and in health, and we take that 
literally. So thank you.
    The Chairman. Thank you.
    Wanda?
    Ms. Ickes. Well, I agree with Melanie, the fact that the 
veterans have their out-processing, and they are told what 
happens next. We are not, you know, especially if there is any 
insight as to the issues that the veterans are having, that 
they might need caregiving, they might not, you know, be the 
same as when they left. It would be great if we were given the 
same out-processing briefing that they are.
    But in our case, he was a reservist, and there is no local 
FRG or anything to kind of steer me. I was on my own. I had to 
figure it out as I went. We both did. He has had the advantage 
that he had the military behind him telling him where to turn, 
you know, and what to do, and I did not have that.
    The Chairman. Thank you.
    Ms. Tanielian, I am astounded to learn from your testimony 
that there has not been a single study performed on the impact 
of caregiving on children, and Mrs. Swoboda talked about the 
impact for her in trying to balance raising children at the 
same time. Why has there been so little research done on the 
whole area of military and veteran caregivers? Thank goodness 
for the Elizabeth Dole Foundation, but, in general, when you 
look at the literature, it is astounding how little research 
has been done.
    Ms. Tanielian. Well, you are right. When you look at the 
literature, what you do find is that most of what we have 
learned about caregiving is from research that has looked at 
caregiving to the elderly or caregiving to individuals who 
suffer from age-related conditions and chronic conditions--
dementia, cancer, and the like.
    I should note that those studies and those findings are 
relevant for military and veteran caregivers, particularly as 
we know that 80 percent of our military and veteran caregivers 
are of the pre-9/11 era and are tending to issues that are also 
associated with age, although our veterans are at higher risk 
for some of those conditions.
    The VA has been a leader in doing research on veteran 
caregivers, particularly around some of those age-related 
conditions--dementia, for example. But often the challenge in 
getting research conducted or programs initiated is having 
awareness that there are issues that may need to be studied. So 
I would say awareness is a challenge, but also funding, making 
sure that there is funding available for researchers to be able 
to implement studies on a specific population or in a specific 
disease or clinical condition area that also includes 
caregiving.
    As we look towards better solutions to improve the care 
that we can provide for specific populations, just as we have 
seen with support programs, caregivers become kind of like that 
offshoot or that incidental population that is served. And so 
we are hopeful by bringing attention and crafting this 
blueprint that will give some facilitation to the research that 
needs to be conducted to answer so many of those knowledge 
gaps, including about children.
    The Chairman. Thank you.
    Senator Casey?
    Senator Casey. Thanks very much, I wanted to reiterate the 
thanks that Chairman Collins expressed to each of you for your 
testimony. This cannot be easy, and I know that this is not the 
way you spend most of your days providing testimony in a Senate 
hearing.
    I was struck by the personal reflections that each of you 
had about the challenge of caregiving in your own experience. 
Mary, when you said early in your testimony about getting the 
diagnosis, you said it was like getting sucker punched and what 
that was like for you and like it would be for anyone.
    Melanie, when you said having caregiver support programs 
``for the first time in 20 years, I can breathe,'' I think that 
gives us a sense of how difficult this is.
    And, Wanda, you said, ``I stepped up because he could 
not,'' which is, I think, something that each of you could say 
about your caregiving.
    Sometimes we have hearings in Congress, and we are not sure 
about the impact around the country. But anyone who is watching 
this or will watch it later or hear about it or read about it I 
think would be inspired by your testimony. So I hope you 
understand that you are helping others in the manner that you 
testified.
    I guess in so many ways you may think that this kind of 
service you are rendering is simply a natural act, right? It is 
an act of love for someone that you have spent most of your 
life with. But in another sense, when we consider what you have 
had to be dealing with all these years, it is an indication 
that you in your own way have been triumphant over something 
very difficult. And we are grateful to have the chance to hear 
it up close in your testimony.
    Wanda, I will start my question with you. I know that in 
your case you were once part of the VA Comprehensive Caregiver 
Program, but recently the Department informed you that you 
would no longer be eligible for the program. How has that 
decision changed your ability to care for your husband and also 
yourself?
    Ms. Ickes. We were recently told that we graduated. I guess 
that is supposed to be a good thing. For us it is not. The 
stipend that I received, that we received, we used that for my 
respite. Sam belongs to a hunting camp, and he goes there a lot 
for his respite care. With TBI and PTSD, he needs to, you 
know--he needs the solitude and things, and that is where he 
would go. But he cannot go by himself. Most of his care is 
safety issues for him, and I cannot just let--it is several 
states away. I cannot allow him to go there himself. The money 
that we received, the stipend we received was used for both of 
our respite. He would go away; he would have someone accompany 
him. I was able to pay them travel and pay them for meals and 
to be away. And that was his respite care and mine because I 
knew he was being taken care of. He was being cared for. So I 
had my down time also. Now we do not have that.
    The stipend also allowed me to go back to school to get my 
degree because he is 100 percent disabled. He is not permitted 
to work. So whatever we want in our house, in our life, for the 
rest of our lives, is going to have to come from me. The 
stipend was enormous for us. It was not a lot dollar-wise, but 
we depended on it to be there just for the little bit of time 
to get me through school so I could, you know, get a career 
going and make the money that we are losing from him.
    Do you want to add anything?
    Mr. Ickes. I just did not understand when they told me I 
graduated from a program that--today is the best I am going to 
be. Tomorrow, I slip each--it might just be a little bit, but 
every day you slip a little more with TBI or PTSD. Yeah, you 
will find a common ground, but you are still going to lose that 
short-term memory. The issues are still going to be there. 
Every day just gets a little tougher. I mean, you kind of 
adjust your life to it, but I do not understand how they can 
tell you that you graduated from a program when it feels like 
you just stepped into the program.
    Senator Casey. Well, I appreciate that, and I know you both 
understand others have had the same experience. I know that the 
VA has initiated an internal review of these eligibility 
decisions and placed a moratorium on any further benefit 
revocations. So while we are happy about that, that no one is 
being discharged from the program in that fashion, it is very 
little solace to you and to others at this time that lost those 
benefits.
    We have a letter to the VA indicating that and also urging 
them to re-enroll those who were discharged with insufficient 
explanation until the review is completed and the procedures 
can be improved. So we are going to continue to work on this.
    Thank you.
    The Chairman. Thank you.
    Senator Tillis?
    Senator Tillis. Thank you, Madam Chair. Since I have been 
gone, I went over to the Veterans' Affairs Committee, and I 
told them I was at this Committee and how we need to make it a 
priority to look at actually addressing some of the things that 
the Ranking Member, Senator Casey, mentioned, some of the 
revocations and disruption of service.
    Here is one thing that I ask. I never miss an opportunity 
in this venue. We have got a lot of red tape to cut through in 
the VA and the DOD. Between now and the time we get through it, 
let your Senate offices and your home states be the scissors. 
Every single one of us, we have opened--I have been here for 
2\1/2\ years. That is how long I have been in the Senate. We 
have opened up our 10,000th case in those 2\1/2\ years helping 
people, 6,000 of which are veterans-related. The next time that 
you deal with the VA on benefits that you are entitled to and 
you are not getting the right answer, let your next phone call 
be to the Senator of your choice in your state. Make it our job 
because we owe it to you.
    First and foremost, I want to thank all of you for your 
service, both the spouses and the men here who served.
    Ms. Tanielian, I want to--I know, by the way, I have just 
got to go back and brag again on Tom and Mary. They come up 
here for a number of things. They were at Senator Dole's 
kickoff for Hidden Heroes. They have come up and advocated for 
ALS research. You are continuing to serve. Not only are you 
serving your household, Ms. Ward, but you are out here doing a 
great service for everybody else who needs your voice.
    But, Ms. Tanielian, I want to talk more--and you are 
talking to somebody who is just in the unique position of being 
on this Committee, the Veterans' Affairs Committee, and the 
Chair of the Personnel Subcommittee. Wanda talked about 
transition. You know, we have talked about the need to do a 
better job of identifying potential--either caregivers right at 
transition or at some point in the life cycle of the veteran. I 
know that you have suggested in the blueprint additional 
research. Can you give me an idea of-- there are a couple of 
things. One, how do we glue together that entire chain? How do 
we identify servicemembers that may not even know that they may 
need care so that we are better alerted and better prepared at 
the time that they do? And, also, what sorts of--I really think 
that we have to touch on the economic case for doing this. If 
the burden continues to increase on caregivers, then we will 
have fewer caregivers. And we will end up having to pay a price 
for less care and less valuable care to the veteran.
    So to what extent does your research or do you think 
research should be focused on, one, gluing this VA, DOD, the 
veterans service organizations, the network that comes together 
in addition to the family caregiver, research on that, and then 
research on the business case so that we can go and talk about 
why funding--this is a dollar well spent. For one thing, it is 
a debt that we owe every single one of you. For another thing, 
I think it makes fiscal sense at some level.
    Ms. Tanielian. So thank you. Those are great questions, and 
I am going to start with your second question first and then 
turn to the other one around transition. And you are absolutely 
right. Making the business case is often what motivates 
individuals to pay attention to something, and so quantifying 
the societal cost savings of caregiving, in fact, was one of 
our research priorities in the blueprint. And while 
stakeholders felt this was highly important and very critical, 
they also wanted it to include research that would document the 
costs that they experienced, not just the savings that they 
contribute but the costs that they accrue as well, in financial 
and economic terms. That can be costs, you know, associated 
with lost productivity, costs associated with, you know, 
support programs or health care utilization as well. So really 
a need to do research that looks at the cost as well as the 
cost-effectiveness of different programs that we can put in 
place. And so we need much more research in those areas.
    On the transition piece and what can we do to better 
identify caregivers, in our 2014 study we made a series of 
recommendations, and they were in four categories, and the 
first really was around empowering caregivers through a number 
of different strategies to help themselves identify but also 
help systems identify them.
    There have been a number of new programs that have been 
implemented, including in the Department of Defense, to try to 
identify individuals who are serving as caregivers and provide 
them with education, training, and peer support.
    We called attention to the need to look at eligibility 
criteria for different programs across different federal 
agencies to ensure that those eligibility criteria were defined 
in ways that were, in fact, intended to target the population 
who is providing care and service to our military 
servicemembers and veterans.
    But we also talked about the need to put in place 
appropriate education and training so that individuals who may 
not understand that their caregivers become aware of what it 
will entail.
    We also talked about the need to create environments that 
are more sensitive to caregivers. Health care providers. Health 
care providers should be conducting caregiving needs 
assessments when they are interacting with their patients. And 
if someone indicates that they have caregiving needs, then the 
health care provider should be asking to speak with their 
caregiver and learning more about that caregiver and doing 
their own needs assessment to understand what it is that the 
caregiver needs to have their health issues addressed as well.
    Senator Tillis. Thank you. Madam Chair, if I may just for a 
second, the VA the week before last announced that they are 
implementing an electronic medical record system that has the 
same platform that the DOD has. Now we have an opportunity to 
really talk about a better integration using the data in the 
electronic health record from the DOD and using the right kind 
of analytics to even better increase our understanding on the 
people who need the help the most.
    The last thing I will leave you with is there is a whole 
group of people out there. At some level, each and every one of 
you have benefitted from some VA benefits, either now or in the 
past. But we also have pre-9/11 veterans, particularly dating 
back to the Vietnam War, a whole class of veterans that may 
have gotten an other than honorable discharge, and those 
circumstances of that discharge may have very much had 
something to do with traumatic brain injury or PTS, and we 
simply did not know how to categorize it. So what we also have 
to do is look back and see that group of people that not only 
the caregivers are struggling, but they never even had a single 
bit of the safety net of VA benefits coming out with an 
honorable discharge, and that is something else we need to look 
at going forward.
    Thank you, Madam Chair.
    The Chairman. Thank you very much, Senator.
    Senator Cortez Masto?
    Senator Cortez Masto. Thank you. Thank you, Madam Chair. 
And thank you to all of you.
    Let me follow up really quickly with Ms. Tanielian on the 
discussion you were just having. First of all, thank you for 
this blueprint. I think it is fantastic, and I hope there are 
many folks, including many here in Congress, who pick this up 
and have wonderful ideas on how we can address some of the 
issues we are talking about today.
    But one of the things that you brought up which I am a big 
fan of is creating a research center of excellence. Can you 
talk a little bit more about that and what you envision that 
would look like?
    Ms. Tanielian. Sure. We identified the need for--or we 
suggested a potential strategy around creating a research 
center of excellence because it would provide the opportunity 
to give strategic pursuit to the research objectives that we 
identified by providing kind of a nest egg of funding and 
leadership, to bring together the field and the community to 
really jump-start some of the needed research. So there are 
multiple ways and multiple examples of other research centers 
of excellence, but we suggested it because we thought a center 
of excellence specifically focused on military and veteran 
caregiving research would go a long way to make sure that we 
can get started on filling the knowledge gaps that we 
identified and pursuing the research objectives that the 
stakeholder community agreed are of high importance right away.
    Senator Cortez Masto. Are there already models out there 
that can be replicated or emulated, or however, that we could 
look to or best practices that could help jump-start that?
    Ms. Tanielian. There are many examples that already exist. 
Given the topic--and there are certainly a number of different 
ways to go about establishing something in the federal agencies 
or in the federal sector or putting something into the private 
sector. And there are advantages and disadvantages with all of 
those different approaches.
    Ultimately, I think given the topic and military and 
veteran caregiving, there are certainly examples of where the 
VA has established other centers of excellence where they 
conduct research in partnership with outside organizations to 
really ensure the leadership and funding and momentum to pull 
together the research community in a multidisciplinary way to 
pursue strategically and intentionally the research objectives 
that we identified.
    Senator Cortez Masto. Thank you. And then let me just say 
to the Wards, Swobodas, and the Ickeses, thank you so much for 
being here. First of all, let me mirror what my colleagues have 
said. Thank you for your service, not only your active service 
in our military and protecting our country, but your continued 
service, sacrifices made both by, gentlemen, you as well as 
your family members. So thank you.
    And, honestly, you know, part of me is sitting here 
thinking this is unconscionable that we even have to have this 
discussion, that we are not doing everything we can to take 
care of you and your families when you have put your lives on 
the line to protect our freedoms and our democracy. It is just 
ridiculous to me.
    So I want you to know, at least from all our perspectives--
I am speaking for my colleagues, but I know they believe this--
that your words are not ringing hollow.
    We have got to do something. And the last thing we want to 
do is have something like this just sit on a shelf somewhere 
and have your words go nowhere. So you are hearing that 
commitment. Already we have put some action items in place, as 
you have heard.
    Let me ask you this, and I think, Mrs. Ward, you talked 
about this. Mary, you highlighted in your comments that you 
were denied respite care by the VA a couple of months ago. Is 
that correct? And can you talk a little bit about that and give 
me a little background on why that occurred?
    Ms. Ward. Yes, I was denied respite care in the fall, and 
actually it was to come here in Washington, D.C., as a fellow 
for the summit in September. And I put in for respite care so 
there would be somebody a few hours a day to help Tom. He needs 
help cooking, getting dressed. It is not like an amputation, so 
it is not like, oh, he absolutely cannot do a thing. He can 
feed himself, but he cannot cook for himself. And the person 
from the VA who did the intake with me, I mean, I will just be 
honest. Here are her words: ``We do not provide people to come 
and cook and clean.'' And I said, ``Okay.'' I mean, I told her 
the truth. That is what I needed. I suppose I could have said 
other things, but I just told her the truth. So I dealt with it 
on a personal level. I handled it. Tom ate meatloaf every night 
for a few nights while I was gone, and I had some people check 
in with him, and we handled it. But it will never happen again. 
I will never go away again without having somebody there to 
care for him or he will have to come with me. That is just the 
way it has to be. The potential for a fall--he still can 
ambulate some around the home--is too great.
    Senator Cortez Masto. Thank you all for telling your 
stories today and having your voices heard. Really, our goal is 
to make sure you make a difference in others' lives as well, so 
thank you.
    The Chairman. Senator Blumenthal.
    Senator Blumenthal. Thank you very much, Madam Chairwoman, 
and thank you so much for having this hearing. And I want to 
thank all of you for being here today. There are few topics of 
greater importance to any of us who serve here, and 
particularly because I serve on the Armed Services Committee 
and on the Veterans' Affairs Committee. As a matter of fact, I 
apologize for being late because I just left a hearing at the 
Veterans' Affairs Committee.
    I would like to ask members of the panel, since we are 
scrutinizing the budget there, whether you think that the VA's 
budget is sufficient to help with caregivers--and we are trying 
to expand this effort; as you know, Senator Murray and the 
Veterans' Affairs Committee has led this effort long before I 
was there, but I am an enthusiastic co-supporter--whether the 
resources are sufficient and whether they are focused in the 
right areas.
    Mr. Swoboda. I would like to say, sir, that it makes sense 
to me that if more caregivers were out there for our veterans--
and, first, let me say this, what it is like to be a combat 
veteran away from combat. I just met a World War II veteran a 
few weeks ago. He was at a place back home in Maine called the 
Cole Museum, and they take time to spend time with veterans and 
sort of ground them and give them a reason to be alive. You 
know, combat veterans, when we are overseas, we are so used to 
being so on edge, things going on around us all the time. You 
are going 1,000 miles an hour. Then when you come home to the 
``Land of McDonald's,'' what I call it, nothing is happening. 
You know, you are still going 1,000 miles an hour, but there is 
nothing going on.
    So a combat veteran will either--without support like my 
wife, you know, being my caregiver, she grounds me. If a 
veteran is grounded and given a purpose to continue on, they do 
not fall into suicide; they do not fall into alcohol. This 
particular World War II veteran had just come out of his house 
5 years ago. He did not want anything to do with anybody since 
World War II. How many years has that been? The guy has missed 
his whole life, until somebody finally got to him, and not 
necessarily his caregiver, but somebody grounded him. And that 
is why caregivers are so important to combat veterans. We have 
to be grounded. We know that there are no IEDs on I-95. But we 
know in our brains that we have to look. You cannot stop that. 
So we need somebody there to ground us, and that is what 
caregivers do.
    Senator Blumenthal. And two of our four children have 
served, both deployed, one in the Marine Corps, the other in 
the Navy. So I know what you mean. They are probably in less 
need of grounding than I am a lot of the time.
    Mr. Swoboda. Yeah.
    Senator Blumenthal. Not that anything that we do here is in 
any way similar in any way to combat. But I have seen this 
countless times in Connecticut, and that is why I have tried to 
work through the VA, and that is why I am asking the question 
about support from the Veterans Administration.
    Mr. Swoboda. May I add, sir?
    Senator Blumenthal. Sure.
    Mr. Swoboda. It makes sense to me that if there were more 
caregivers, the VA would have to spend less money on mental 
health. You know, they would have to spend less money on 
mileage to go to a doctor, because that caregiver is there, 
that caregiver is being paid to be there for them. My wife has 
a master's degree. She is a school teacher. She has had to step 
way down just to be there for me. And she is happy to do that, 
and I would much rather have her than anybody else. But there 
is a sacrifice there.
    Senator Blumenthal. Well, I want to thank you both for your 
service, and I mean both of you. And I thank the countless 
other caregivers for their service. This point is one that I 
make. We tend to thank the veteran for her or his service, and 
the caregivers are equally deserving of thanks. So I appreciate 
your being here and giving a face and a voice to that very 
important point. Thank you.
    Thank you, Madam Chair.
    The Chairman. Thank you, Senator.
    Today we have had an extraordinary hearing, hearing from 
the caregivers, seeing our veterans who have served our country 
so well. Listening to such terrific advocates as Senator 
Elizabeth Dole and Ryan Phillippe has truly been a moving 
experience. And I do believe that the testimony that you have 
given us, supported by the work the RAND Corporation has done, 
will help us advance the three bills that we have talked about 
today.
    This Committee does not have legislative jurisdiction, but 
what we do have is the ability to shine a spotlight on an issue 
that has not received the attention that it deserves. And with 
your help, that is exactly what we have done today.
    I could not help but think as I listened to the testimony 
today that there is a reason that we use the words ``military 
family,'' because as we have seen from the testimony of Mary, 
of Melanie, of Wanda, when a person joins the military, the 
whole family serves. And that service can last a lifetime.
    It is very clear to me that our Nation's 5.5 million 
military caregivers who face such substantial emotional and 
financial issues each and every day need far more support than 
we have been giving. And I am just so grateful that you are 
willing to come and share your personal stories with us, 
because that, along with the RAND Corporation study and the 
determined advocacy of the woman who will not take no for an 
answer, Senator Elizabeth Dole, and the ambassador of her 
group, Ryan Phillippe, will allow us to get something done. And 
I just want to assure you of my personal commitment in that 
regard.
    Senator Casey, do you have any final comments that you want 
to make?
    Senator Casey. Yes, briefly. Thank you, Madam Chair, and I 
want to thank our witnesses. Maybe Wanda said it best. Wanda, 
you said in your testimony about Sam, you said, ``He did his 
job. He went above and beyond his duty.'' I think that could be 
said not only of Sam but of you and of Melanie and Joe and Mary 
and Tom. We are grateful that you have been willing to do that 
in your lives, but also grateful that you are willing to share 
it and give us both inspiration and information about why we 
need to pass these legislative items as well as to do other 
advocacy on your behalf and on behalf of those that we 
represent.
    So thanks for being here and thanks for serving your 
country in more ways than one.
    The Chairman. Committee members will have until Friday, 
June 23rd, to submit any additional questions for the record 
which we may be getting to you. But, again, my profound thanks 
to all of our witnesses today, to my Ranking Member, and to all 
the Committee members who participated in today's hearing. And 
thank you also to our dedicated staff. We could not do it 
without them as well.
    Thank you for being here, and this concludes our hearing.
    [Whereupon, at 4:38 p.m., the Committee was adjourned.]

    
      
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                                APPENDIX

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                      Prepared Witness Statements

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         Prepared Statement of Senator Elizabeth Dole, Founder,
                       Elizabeth Dole Foundation
    Thank you Chairman Collins, Ranking Member Casey, and members of 
the committee for calling today's hearing.
    By doing so, the committee demonstrates its dedication to 
recognizing our nation's hidden heroes--their honorable service, their 
enormous sacrifice, and their selfless daily, and often lifelong, 
journey of care.
    Chairman Collins, I owe you special thanks for your support of key 
legislation and the Hidden Heroes Caucus, sending a strong signal that 
our nation's leaders must stand with America's military caregivers. 
Thank you so very much.
    This is not my first time testifying before the Senate Special 
Committee on Aging. Recently, I came across testimony I gave on June 
29, 1978--39 years ago, as a member of the Federal Trade Commission. 
And, like each of you, I once sat up there on the dais as a member of 
this committee.
    To be honest, with the many issues before the Senate, I didn't know 
at the time the true benefit military and veteran caregivers are making 
to our Nation. And the huge personal toll it is taking.
    That all changed for me in 2011 when my husband Bob was 
hospitalized at Walter Reed. I became friends with young spouses, 
mothers, dads . . . sitting bedside, selflessly looking after their 
wounded, ill or injured veteran. Their strength was incredible. Yet, I 
could see they were carrying an emotional weight almost too heavy to 
bear. As they reeled over their loved one's injuries, they were being 
asked to make extremely difficult decisions without any preparation. 
And they were quietly wrestling with the fact that they might be 
serving in this new role for the rest of their lives.
    As I visited with them day in and day out, my eyes were opened to 
the critical role these caregivers play in helping our wounded warriors 
recover and thrive. And sadly, how much stress is placed on them by the 
tremendous responsibilities they take on, without any real preparation, 
often in isolation, and with very little support.
    Just as heartbreaking are the stories of pre-9/11 caregivers who 
have been supporting their loved ones for years, struggling to care for 
the latent effects of undiagnosed post-traumatic stress, Agent Orange, 
exposure to burn pits, or decades-old traumatic brain injuries that are 
now causing early on-set dementia. These caregivers are just as 
terrified. Just as isolated. Just as important to their veterans. But 
when they apply for the VA Caregiver stipend, they are told that the 
timing of their veteran's service does not qualify them for support.
    I established the Elizabeth Dole Foundation in 2012 to raise 
awareness and support, empower military caregivers and recognize their 
service to our Nation. We began by commissioning the RAND Corporation 
to develop the first comprehensive, nationwide, evidence-based research 
on military caregivers.
    At the time, we knew so little, but realized we needed to uncover 
exactly . . . Who are military caregivers? How many are there in 
America? What roles do they play? What are their needs? How old are 
they? What kind of support do they provide? And for what type of 
injuries?
    There are 5.5 million Hidden Heroes in our Nation. Each provides 
daily support and care around various functions of day-to-day life. 
These women and men manage medications, schedule and coordinate 
appointments, provide emotional and physical support, arrange for 
rehabilitation, handle legal and financial challenges, and more.
    Caregivers support every generation, from World War II veterans, 
like my husband Bob, to injured service members of our current 
operations. In fact, there are 1.1 million military caregivers, most 
under the age of 30 with children in the home, who care for post-9/11 
era veterans and service members.
    Though caregivers may not always be easy to recognize, they are all 
around us.
    Our research also helped clearly define the broad societal benefits 
of caregiving. RAND's experts concluded that the most important factor 
to a wounded warrior's recovery or improvement was a well-supported 
caregiver. This Statement could have been the headline of the report, 
but it was overshadowed by more alarming findings.
    We discovered that by nearly every measure, military and veteran 
caregivers were suffering under the weight of their responsibilities. 
The study found high instances of isolation, physical ailments, 
depression, unemployment, debt, and much, much more.
    Yes, caregivers are vital to those who were injured while 
protecting our freedom and our security. But if we do not come to the 
aid of these hidden heroes, a crucial, irreplaceable support system for 
disabled service members and veterans will be imperiled.
    There is also an economic argument for supporting military 
caregivers. They provide nearly $14 billion dollars a year as an 
unpaid, voluntary workforce--enormous costs that would otherwise be 
borne by our society.
    These women and men do not necessarily think of themselves as 
caregivers--for example, ``I'm just the spouse taking care of my 
husband, the mother caring for my son''--and they feel uncomfortable 
asking for help. This makes it difficult to identify them, and in turn, 
difficult to connect them to the support they might need.
    And, very few services and helpful resources are designed 
specifically for military caregivers. We want to solve these problems 
by providing a continuum of care across a lifetime.
    That's why, in addition to continuing our research partnership with 
RAND, the Elizabeth Dole Foundation is actively working with leaders in 
government as well as the private sector, nonprofits, and the faith-
based community.
    Last September, we launched Hidden Heroes, a multifaceted campaign 
to expose the tremendous challenges and long-term needs faced by our 
nation's military caregivers and to inspire fellow Americans to seek 
solutions. We also introduced HiddenHeroes.org, a first of its kind Web 
site full of carefully vetted resources and a safe, secure place for 
caregivers to connect with one another. In less than a year, more than 
60,000 caregivers and concerned citizens have come to the site to 
search for information and to take action to help.
    Our campaign is chaired by actor Tom Hanks, and we have enlisted 
the help of several other high-profile individuals as Hidden Heroes 
Ambassadors, like Ryan Phillippe. Ryan is a multi-award winning actor 
and star of NBCUniversal/USA Network's conspiracy thriller, Shooter. He 
plays the role of military veteran, Bob Lee Swagger. More 
significantly, Ryan has close family ties to the military community.
    In real life, Ryan is using his own ``swagger'' to privately meet 
with military caregivers across the country to help amplify their 
voices. Our Hidden Heroes Campaign features Ryan in a national public 
service announcement that has been seen across the country in 
newspapers, magazines, on TV and digitally.
    Ryan, your work with us is extraordinary. My heartfelt thanks to 
you!
    We also announced Hidden Heroes Cities, the galvanizing of 
communities to identify caregivers in their midst and the local 
resources to support them. I am proud to say we have recruited 100 
cities to date, from Augusta to Phoenix, from Pittsburgh to Nashville.
    This is where the real action is happening. We need to wrap our 
arms around these caregivers where they live and inspire them to raise 
their hands so that our communities can deliver the support they 
deserve. We are asking you to encourage cities in your States to become 
Hidden Heroes Cities.
    Most importantly, we are not doing this alone. In the Foundation's 
National Coalition, there are more than 300 partners. The VA, local, 
state, and federal leaders, faith-based organizations, VSOs and MSOs, 
philanthropists, corporations, even the media, are helping to power the 
Hidden Heroes movement.
    The VA Caregiver Program is one great example of what happens when 
coalitions come together to work with Congress to address gaps in 
services. And we continue to press for needed reforms and to 
collaborate with the VA to make this program much more efficient and 
more accessible to a broader range of military caregivers.
    As you listen to Ryan and our other panelists, I urge you to 
consider taking two actions after today's hearing:
    First, make the bipartisan Military and Veteran Caregiver Services 
Improvement Act the law of the land.
    This bill will expand essential services for caregivers of all 
eras. It will also provide direct assistance with some of the top 
challenges military caregivers face every day including respite, 
childcare, financial advice, legal counseling, and education.
    I have with me a letter signed by 30 Hidden Heroes partner 
organizations. It calls on Congress to urgently pass this piece of 
life-changing legislation. This is the third year in a row we have 
asked for passage of this critical legislation--let's make it the law 
of the land this year.
    Our second ask is that Congress invest in the critical research 
necessary to sustain positive outcomes for our caregivers in the coming 
years.
    In the next panel, you'll hear from Terri Tanielian, Senior 
Behavioral Scientist at the RAND Corporation.
    As a follow up to our 2014 study, the Elizabeth Dole Foundation 
commissioned RAND last year to develop a blueprint to forecast the most 
important areas where additional research is required in order to 
effectively support military caregivers' long term needs.
    Terri will share key findings of the research blueprint today, 
which was released just this morning. These findings can inform us 
all--public, private, nonprofit, and local communities--on the most 
urgent areas where we need additional research.
    We urge congressional leaders to champion this research critical to 
our support of military caregivers five, ten, 20 years out . . . to 
work with us to provide funding to address these urgent research gaps.
    And I have to tell you . . . Based on what we already know, we 
expect more alarming issues to be uncovered. Anecdotally, we are 
hearing more about caregiver substance abuse and caregiver suicide. 
Marriages between veterans and caregivers are more vulnerable than 
ever--the strain of the urgent challenges now and the long road ahead 
is becoming too much for too many.
    Additionally, I want you to hear from some of our Hidden Heroes. 
There is truly no better way to appreciate their service and sacrifice 
than hearing directly from them.
    We hope their testimony inspires each of you to join the bipartisan 
Hidden Heroes Caucus. I hope you'll be an advocate with your colleagues 
in the Senate and in the House. Show Americans that we can come 
together around the most important issues of our day.
    There is much work yet to be done to ensure our hidden heroes are 
empowered with the same support and love they give so selflessly every 
day. And, as I said, we cannot do it alone. We need your help.
    Our nation has long admired and respected our military men and 
women who have served our country so valiantly. And we have always 
reserved a special honor for those who returned from service with 
physical and emotional scars.
    Our goal now is an America where caregivers are empowered, 
appreciated and recognized for their service, an America where military 
caregivers are woven into the very fabric of the nation's appreciation 
of our military.
    Thank you so very much.
                               __________
   Prepared Statement of Ryan Phillippe, Actor, Director, and Writer
    Thank you, Senator Dole, for your kind words.
    I know I speak for everyone here, when I say that we are truly 
inspired by your leadership, vision and tireless work on behalf of 
military caregivers. You are bringing our country's Hidden Heroes out 
of the shadows to honor their service. And I want to thank each of you 
for this opportunity today.
    My experience growing up in a military family helped me prepare for 
this role. You see, my father and both of my grandfathers served in the 
military. I grew up with a deep respect for our veterans and an 
understanding that they are our nation's real heroes.
    These days, it is a privilege and a great honor to play a veteran 
in my latest role, as Bob Lee Swagger on USA Network's Shooter.
    Now, thanks to the Elizabeth Dole Foundation, I've learned about a 
different kind of hero--our military caregivers. They are Hidden 
Heroes, family members or friends caring for warriors who return home 
from service with physical and emotional scars.
    And today, we are here to ask for your help and urge you to take 
action.
    And, if you know anything about Senator Dole, she doesn't take no 
for an answer! She will hold you--all of us--accountable. Because our 
nation's military and veteran caregivers deserve it.
    Over a lifetime of care, military caregivers face tremendous 
challenges and, right now, they have very few resources to help them.
    It's on all of us to fix that.
    Right now, military caregivers are shouldering this responsibility 
of care alone. They don't expect or ask for help, but the work they do 
merits more than just a display of gratitude. We owe our military and 
veteran caregivers purposeful action and life-long support.
    Something struck me in Senator Dole's remarks I want to emphasize.
    The Foundation's research found that military caregivers play an 
essential role in the recovery process of our veterans, and in 
improving their quality of life.
    And I quote, ``The best chance for a wounded warrior to recover and 
thrive is having a strong, well-supported caregiver.''
    Yet, this role imposes a substantial physical, emotional, and 
financial toll on the caregivers and their families. We can do better.
    This is why we're here. We need to sign into law some very 
important legislation.
    For starters, I'm speaking specifically about the recently 
reintroduced Military and Veteran Caregiver Services Improvement Act--
bipartisan legislation, introduced in both the House and Senate, to 
make expanded resources available to military and veteran caregivers of 
all eras.
    By signing onto this bill--you will strengthen and expand vital 
programs that support caregivers nationwide, and ensure that caregivers 
are recognized for their service in tangible ways.
    And, ultimately, we will have a positive impact on the health and 
well-being of our nation's veterans and military families for a long 
time to come.
    Here's a snapshot of what the Act will do:

      The VA's caregiver program should be available to all 
caregivers caring for all veterans regardless of when they served. If 
passed, pre-9/11 military caregivers would have the same support we 
give to our post-9/11 caregivers. Look, Bob Dole served before 9/11. We 
are talking about caregivers for the heroes who served with him and the 
generations that followed. Their caregivers not only need but deserve 
our assistance.
      The Act would expand essential respite services for 
military caregivers. They should receive some relief from their duties. 
Some time off from their 24-hour a day, 7 days a week responsibility to 
run errands, pick up their kids from school, or relax. They need it. 
Let's give it to them.
      It would better coordinate and align caregiver services 
across the VA system, government agencies and private services, so no 
matter where you live in our country, as a military caregiver, you have 
access to support.
      The bill would support caregivers for veterans with 
service-related invisible injuries, like TBI, in the same way we help 
caregivers with veterans who have visible wounds. It shouldn't matter 
whether we see the scar or not to give our veterans and caregivers the 
resources they need.

    And finally, it provides assistance with childcare, financial 
advice, legal counseling, and education, which are all top, and 
currently unmet, needs.
    As a Hidden Heroes Ambassador, I've had the privilege to meet with 
military caregivers across the country. As I speak before you now, I 
can't help but think about Megan and her husband Matt, a Marine Corps 
veteran who honorably served two tours in Iraq. Megan and Matt are high 
school sweethearts and man, when you meet them, you know it. They now 
live in Connecticut.
    They are a young couple. They are in love. And yet, they have a 
long road ahead. As a result of injuries received during his combat 
service, Matt now suffers from a traumatic brain injury and PTSD. 
Megan, his wife and primary caregiver, is by his side every day, 
helping him as he struggles with wounds we can't see, invisible wounds 
that most of us in this room could never imagine.
    Megan explained to me that she never pictured herself as a 
caregiver for her husband, especially so soon in her marriage, but Matt 
needs her. It is a day in and day out, 24-7 responsibility, managing 
doctors appointments, juggling medications, always on high alert 
looking out for ``things'' that might trigger Matt's PTSD and, all, I 
might add, while raising three young boys.
    Megan is making the most of things, but she needs our help. In 
fact, there are 5.5 million military caregivers like Megan, quietly 
serving in communities across America. They can no longer go it alone. 
They need us. They need you.
    I ask you again, members of the Committee, and all of you here 
today, to give your full support to the military caregivers serving our 
Nation. Senators, please sign onto the Military Caregiver Services 
Improvement Act and each of the pieces of legislation outlined.
    To everyone here today and watching across the country, please seek 
out the military caregivers in your cities and towns, direct them to 
support and resources at HiddenHeroes.org and ask how you can help.
    Thank you.
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            Prepared Statement of Mary Ward and Thomas Ward,
                     Veteran Caregiver and Veteran
    Good afternoon and thank you Chairman Collins and Ranking Member 
Casey for inviting me and my husband, Tom, to this hearing on military 
and veteran caregivers. I am humbled to be here alongside a force of 
nature like Senator Dole, an advocate like Ryan Phillippe, an expert 
like Terri Tanielian, and my peers.
    I became a Dole Caregiver Fellow in 2016, but my journey as a 
caregiver started long before then. In June 21, 2010, Tom was diagnosed 
with ALS. Prior to that, in 1993, Tom had been disabled from 
encephalitis. He has required care from me since then, but the all-
encompassing care of ALS is intense.
    I had his care figured out and organized until ALS came along. It's 
a devastating diagnosis. For me it was like getting sucker punched. Tom 
and I are that couple that fell in love almost instantly in 1979. My 
grief has known no bounds. I know how this disease works. It will steal 
his life, and if I am not careful it will take mine as well. The work 
ahead as his caregiver is daunting at best. I am certain that I am not 
up to the task, alone, yet for the most part I know I will have to be.
    In 2008, ALS was made a presumptive illness for veterans. Veterans 
are twice as likely to get ALS as non-veterans and more than 4,500 
veterans at a given time have ALS. Tom served in the US Marine Corps 
from 1972-1975 so he qualified for benefits. Enter the VA into our 
lives.
    I had not considered myself Tom's caregiver until later in my life. 
I was committed to our vows and love for each other. A caregiver to me 
meant someone who was paid to come in and provide services. In 2013 I 
saw an interview with Senator Elizabeth Dole about caregivers; that was 
my epiphany, that I was a caregiver.
    ALS is a catastrophic disease: physically, emotionally, and 
financially. There is never a day that goes by that I am not grateful 
for all the VA does to support Tom as he battles ALS. The challenge 
lies in ensuring that he gets what he needs in a timely fashion: the 
correct breathing mask, medications, equipment, and so on. While I work 
on managing resources available from the VA, at the same time I am 
taking care of Tom and teaching Advanced Placement U.S. Government and 
Politics online. Tom's need for assistance is non-stop. He is moving 
toward dependence rather than independence. That is never going to 
change.
    One huge worry I have is the financial aspect of my future. I teach 
high school online so I can care for Tom but have done so at a 
significant salary reduction which has impacted my future retirement 
funds. I save diligently but I am deeply concerned that as his 
dependence grows I will need to pay for assistance out of pocket as the 
VA will only provide 28 hours of care a week, and that will never be 
enough if Tom lives to full paralysis.
    We have two adult children who cannot assist in their dad's care. 
Our daughter is a 2nd grade teacher in Charlotte. Our son is a sergeant 
first class with 14 years in the Army and currently a drill sergeant. 
Their dad is their hero and would help in a heartbeat if it was 
possible. The best thing they can do is to continue to grow in their 
careers; that is the kind of help we want from them.
    Being a Foundation Fellow has been life changing for me. I have 
developed lifelong friendships with other fellows. Senator Elizabeth 
Dole has encouraged us to be ``solutionists'' and so we are, with each 
other, and with other caregivers.
    As a pre-9/11 caregiver the VA offers me almost nothing. I receive 
no caregiver training from the VA, no stipend, no support other than a 
monthly national call with focused topics, and a few months ago was 
denied respite hours.
    I am one voice, among many, who need consistent, and compassionate 
help as we carry this heavy responsibility caring for our veteran. And 
there is still so much that we don't know. We need to cultivate a 
better understanding of the needs of caregivers through research like 
the kind you heard about from Terri. And we need action. I hope you 
will consider passing the Military and Veteran Caregiver Services 
Improvement Act to help caregivers like me. Thank you for your time and 
consideration today. I welcome your questions for myself and my 
husband, Tom.
                               __________
         Prepared Statement of Melanie Swoboda and Joe Swoboda,
                     Veteran Caregiver and Veteran
    Good afternoon, senators, and thank you Chairman Collins and 
Ranking Member Casey for having Joe and I at this hearing on military 
and veteran caregivers.
    My husband, retired Sergeant First Class Joseph Swoboda, is a 
three-time combat veteran of Operation Iraqi Freedom. He was deployed 
during the initial invasion in 2003, again in 2005, and again in 2007. 
Each time, the deployments were longer and longer. In 2003, he left for 
8 months, in 2005 for 12 months and in 2007, Joe was overseas for 15 
months.
    During the initial invasion, and again in 2005, Joe sustained 
injuries in two explosions, in both of which he lost consciousness. 
However, because of the intensity of the fighting, there was no time 
for him to be checked by medics, so he shook it off and remained in the 
battle. Years later, the injuries he sustained would become impossible 
to ignore.
    This several years period of rapid deployments was a whirlwind. 
Even when Joe was home, he was not home--when he was not at war, he was 
training for war, in field exercises, so there was no time to recognize 
he was having any mental health issues. He had to push through it, and 
so did I.
    After the third deployment, Joe asked to be given an assignment 
where he could train without being deployed. However, when he stopped 
going to combat, that was when the problems really started, when we 
finally had the opportunity to slow down, and these difficulties he was 
having started coming to light.
    I knew he was struggling--he was home, but he had never really come 
back from Iraq. A fellow soldier, who was also a trusted friend saw his 
struggle, too, and thankfully, insisted that Joe seek help for the 
overwhelming symptoms he was experiencing as a result of his Traumatic 
Brain Injuries and Post Traumatic Stress. The invisibility of his 
wounds meant most in the Army had never recognized Joe as being 
injured.
    Once these symptoms began to affect his work, Joe was medically 
retired from the Army and during his out processing, a staff member at 
Ft. Benning handed me an application for the VA Caregiver Program. I 
filled out the paperwork, but I wasn't really sure what I was applying 
for. Of course, even when Joe had still been active duty, I was his 
caregiver, but I had never recognized it. All of the tasks I was doing 
were the ones you'll hear any caregiver talk about: I was managing his 
medications, I was raising the kids alone, I was managing finances, and 
I was helping him remember things that he could no longer remember.
    I love my husband, and I would absolutely care for him regardless, 
but having caregiver support programs in place is so important to me 
because for the first time in 20 years, I can breathe. I can't imagine 
how much harder this would be without those programs--but I know 
millions of caregivers manage every single day.
    It's still stressful, there's still a lot I have to do, but having 
the financial support of receiving a stipend and the opportunity for 
respite care has been crucial for my family.
    There are days when I think I can't go on like this, I can't have 
this much stress and pressure on me. And it's not just the stress on 
me, I also see how the stress of caregiving affects our children, too. 
Respite services, though, give all of us an opportunity to recharge.
    Support systems like the Dole Caregiver Fellowship, with the 
network of knowledgeable caregivers who can help answer so many 
questions, and programs offered by the VA such as the Caregiver Support 
Program make this sustainable for me and for so many other caregivers.
    This kind of support should be available to all military and 
veteran caregivers, whatever era their veteran served. It's really 
helping people. It's really making a difference. I hope that you will 
consider supporting and passing the Military and Veteran Caregiver 
Services Improvement Act to do just that.
    Thank you so much for your time this afternoon. I look forward to 
answering any questions you may have.
                               __________
          Prepared Statement of Wanda Ickes and Samuel Ickes, 
                     Veteran Caregiver and Veteran
    Thank you Chairman Collins and Ranking Member Casey for inviting me 
here today to testify. I would also like to thank the Elizabeth Dole 
Foundation and Senator Dole, Ryan Phillippe, and Terri Tanielian for 
taking the time to be here today. It is humbling to have voices like 
theirs speak on behalf of caregivers like myself.
    It is my hope that by sharing a small part of my journey as a 
caregiver with this committee that you can ensure future caregivers do 
not face the same hurdles that my husband and I--and other caregivers--
have had to overcome.
    My husband Sam had been married to the Army long before he married 
me. In the 80's, he was an Army Ranger which meant despite it being so-
called ``peacetime'', he still saw action. That's when he suffered his 
first TBI, in Panama. Later, he was in a bad accident that got a lot of 
metal put in his body, so much that the Army said he couldn't do his 
job anymore and released him.
    After 9/11, he couldn't not do the job the Army trained him to do. 
He went and got every waiver he needed so he could go back in the 
Reserves as an MP, a military policeman. He signed up for every single 
deployment. He was deployed more than he was not. Over the course of 
those deployments, Sam earned three Purple Hearts. He did his job. He 
brought every single person back alive. He went above and beyond his 
duty.
    Sam came back from his deployments looking like the same person, 
but he didn't come back acting like the same person. When you meet him, 
when you speak to him for a couple minutes, he looks like anyone else. 
Talk to him a little bit longer, and you start to see his issues in his 
eyes, in the way he talks. Sam undeniably still lives with the effects 
of war.
    One day, when Sam was home on leave from a deployment, he had gone 
into the backyard to grill dinner. After he had been gone a while, 
longer than dinner should have taken, I glanced out the window and saw 
flames lapping at the side of the house. But I didn't hear Sam doing 
anything about it. I ran outside and saw Sam was just standing there, 
wide-eyed, staring at the fire eating away at our house. I pushed him 
away, closed the grill, put the fire out, and that's when I realized he 
had some serious issues. That's when I realized he would need some 
extra help. The Army didn't see it that way.
    When Sam came back from that last deployment, where he suffered his 
last major TBI, the Army released him and said he was healthy enough to 
go back to his civilian life. In the 60 days of leave he had between 
leaving the military and going back to his old job, I began noticing 
more of the little things that were different about him. He was 
stuttering, he couldn't process things, his memory was terrible. He was 
different, distant.
    I took him to the VA, and I pushed the issue. Sam wasn't the same 
person. The more I talked about the issues he was having, the more the 
doctors realized I was right. But I had to write my Senator to get the 
Army doctors to reevaluate him so he would get the right benefits from 
the military.
    It should not have been that hard. The Army was going to send him 
back to civilian life and he couldn't hold a job. He could have ended 
up homeless. Or worse. I couldn't and wouldn't let that happen. I had 
to figure out everything out on my own. I had to make it right for him, 
for us. When he came back with his issues, I stepped up because he 
couldn't. I took control because he couldn't. I became his caregiver.
    When we had access to the VA Caregiver Program, it was very good to 
us. It allowed me to have respite time as a caregiver. To have the 
downtime, the respite time when I could focus on me, that stipend, you 
can't put dollar signs on it.
    As you consider how to improve the lives of caregivers, know that 
the Military and Veteran Caregiver Services Improvement Act makes 
important strides in improving coordination between the Department of 
Defense and the VA when service members are transitioning into civilian 
life and in extending a priceless stipend to so many caregivers and 
veterans in need. Those are certainly policies that would have helped 
me and Sam as we figured out this new life. I hope you will support 
this legislation and help ensure it is signed into law.
    Thank you for allowing me this opportunity to share and I look 
forward to your questions.

  
      
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                  Additional Statements for the Record

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