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
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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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Available via the World Wide Web: http://www.govinfo.gov
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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
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Kevin Kelley, Majority Staff Director
Kate Mevis, Minority Staff Director
CONTENTS
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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
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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.
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
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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