[House Hearing, 118 Congress]
[From the U.S. Government Publishing Office]
EVERYDAY HEROES: SUPPORTING THE
VETERAN CAREGIVER COMMUNITY
=======================================================================
HEARING
before the
COMMITTEE ON VETERANS' AFFAIRS
U.S. HOUSE OF REPRESENTATIVES
ONE HUNDRED EIGHTEENTH CONGRESS
SECOND SESSION
__________
WEDNESDAY, SEPTEMBER 25, 2024
__________
Serial No. 118-84
__________
Printed for the use of the Committee on Veterans' Affairs
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Available via http://govinfo.gov
______
U.S. GOVERNMENT PUBLISHING OFFICE
58-234 WASHINGTON : 2026
COMMITTEE ON VETERANS' AFFAIRS
MIKE BOST, Illinois, Chairman
AUMUA AMATA COLEMAN RADEWAGEN, MARK TAKANO, California, Ranking
American Samoa, Vice-Chairwoman Member
JACK BERGMAN, Michigan JULIA BROWNLEY, California
NANCY MACE, South Carolina MIKE LEVIN, California
MATTHEW M. ROSENDALE, SR., Montana CHRIS PAPPAS, New Hampshire
MARIANNETTE MILLER-MEEKS, Iowa FRANK J. MRVAN, Indiana
GREGORY F. MURPHY, North Carolina SHEILA CHERFILUS-MCCORMICK,
C. SCOTT FRANKLIN, Florida Florida
DERRICK VAN ORDEN, Wisconsin CHRISTOPHER R. DELUZIO,
MORGAN LUTTRELL, Texas Pennsylvania
JUAN CISCOMANI, Arizona MORGAN MCGARVEY, Kentucky
ELIJAH CRANE, Arizona DELIA C. RAMIREZ, Illinois
KEITH SELF, Texas GREG LANDSMAN, Ohio
JENNIFER A. KIGGANS, Virginia NIKKI BUDZINSKI, Illinois
Jon Clark, Staff Director
Matt Reel, Democratic Staff Director
Pursuant to clause 2(e)(4) of Rule XI of the Rules of the House, public
hearing records of the Committee on Veterans' Affairs are also
published in electronic form. The printed hearing record remains the
official version. Because electronic submissions are used to prepare
both printed and electronic versions of the hearing record, the process
of converting between various electronic formats may introduce
unintentional errors or omissions. Such occurrences are inherent in the
current publication process and should diminish as the process is
further refined.
C O N T E N T S
----------
WEDNESDAY, SEPTEMBER 25, 2024
Page
OPENING STATEMENTS
The Honorable Mike Bost, Chairman................................ 1
The Honorable Mark Takano, Ranking Member........................ 3
WITNESSES
Panel I
Dr. Colleen Richardson, Psy.D, Executive Director, Caregiver
Support Program, Veterans Health Administration, U.S.
Department of Veterans Affairs................................. 5
Accompanied by:
Ms. Laura Duke, Chief Financial Officer, Veterans Health
Administration, U.S. Department of Veterans Affairs
Panel II
Dr. Rajeev Ramchand, Senior Behavioral Scientist and Codirector,
RAND Epstein Family Veterans Research Institute................ 36
Mr. Steve Schwab, CEO, Elizabeth Dole Foundation (EDF)........... 38
Ms. Vanessa Chism, Elizabeth Dole Caregiver Fellow............... 40
Mr. Troy Broussard, State Director, AARP......................... 42
Mr. Jonathan Pruden, Special Advisor to the Chief of Staff-
Warrior Care, Wounded Warrior Project.......................... 44
APPENDIX
Prepared Statements Of Witnesses
Dr. Colleen Richardson, Psy.D Prepared Statement................. 59
Dr. Rajeev Ramchand Prepared Statement........................... 61
Mr. Steve Schwab Prepared Statement.............................. 67
Ms. Vanessa Chism Prepared Statement............................. 73
Mr. Troy Broussard Prepared Statement............................ 81
Mr. Jonathan Pruden Prepared Statement........................... 87
Statements For The Record
Veterans of Foreign Wars of the United States Prepared Statement. 99
Paralyzed Veterans of America Prepared Statement................. 103
Quality of Life Foundation Prepared Statement.................... 106
Blue Star Families Prepared Statement............................ 109
EVERYDAY HEROES: SUPPORTING THE
VETERAN CAREGIVER COMMUNITY
----------
WEDNESDAY, SEPTEMBER 25, 2024
Committee on Veterans' Affairs,
U.S. House of Representatives,
Washington, DC.
The committee met, pursuant to notice, at 10:16 a.m., in
room 360, Cannon House Office Building, Hon. Mike Bost
(chairman of the committee) presiding.
Present: Representatives Bost, Rosendale, Miller-Meeks,
Murphy, Van Orden, Ciscomani, Self, Kiggans, Takano, Brownley,
Pappas, Cherfilus-McCormick, Landsman, Budzinski, and Kennedy.
OPENING STATEMENT OF MIKE BOST, CHAIRMAN
The Chairman. The committee will come to order. First off,
I want to welcome all of our witnesses to the hearing here
today. I thank you for being here.
Before we get started, I would like to take a moment to
recognize our Gold Star family remembrance week, which honors
the families who have lost loved ones in service to our Nation.
Their sacrifices will never be forgotten and we extend our
deepest gratitude to them.
I also want to take a moment to welcome back to the
committee, I hope he is not having flashbacks, former U.S.
Department of Veterans Affairs (VA) Secretary Bob McDonald is
in the room.
Well, today we are going to discuss the critical issues
facing veterans' caregivers. Veterans' caregivers play an
unseen role in supporting their loved ones, the men and women
who serve our country.
Caregivers include veterans, spouses, children, parents
making countless sacrifices to care for their loved ones. Many
of these caregivers face emotional, financial, and physical
hardships because of their care that they have to deliver for
their veterans.
As a veteran who comes from a military family I understand
these challenges first-hand. My uncle returned home from
Vietnam with visible and invisible wounds of war and went on to
live a very successful life, but that required some care and
attention from the extended family.
Now, just yesterday, the Research and Development (RAND)
Corporation published a report on challenges and hardships
millions of military families live with every day. This report
sheds light on the evolving demographics of caregivers with
more aging parents and young children taking on caregiver
roles.
One of the major concerns in the report, which we have also
heard from advocates and stakeholders, is the lack of access to
mental health resources.
Caregivers are all also often isolated and experienced high
levels of stress and burnout, but many are unaware or unable to
access VA resources such as caregiver-specific mental health
support groups. This is especially true in rural parts of this
country like my district.
Now, provisions of the Senator Elizabeth Dole Act taken
from Ms. Kiggans' Caregiver Outreach and Program Enhancement
(COPE) Act, will require VA to award grants to improve the
mental health support for caregivers. This is an important step
toward addressing the mental health stigma and giving
caregivers the support they need.
Caregivers' families face economic pressure as many are
forced to reduce work hours or leave employment entirely. While
some financial support is available through the VA stipends, it
often falls short.
Beyond these challenges we must address the Biden-Harris
administration's failure to release new regulations from the
Program of Comprehensive Assistance for Family Caregivers
(PCAFC). The administration has dragged its feet on these
changes and leaving thousands of caregivers in limbo.
Caregivers support the men and women who served and it is
about time that the White House and VA put some action behind
their words. We are even hearing now from caregivers that VA
has slowed down services and new programs since disclosing
their budget shortfall.
It has been a battle getting clear information from VA
about the Veterans Health Administration (VHA) budget
shortfall. Based on what we know, none of the caregivers'
budget accounts seem to be included so it is troubling and
confusing why this is happening.
Now, I understand that the administration and the VA
leaders are urging Congress to immediately approve the VHA $12
billion budget shortfall without us asking questions.
Well, today's hearing will help us hold VA accountable and
determine the actions needed to ensure caregivers receive full
support they deserve.
Now finally, as I previously mentioned, the Dole Act is
critical legislation to improve services for caregivers. The
Dole Act expands access to home and community-based services
for veterans and would expand mental health support for
caregivers. I cannot imagine anyone that would vote against
this.
I hope to bring the bill to the floor very soon. It is time
to put politics aside support the needed legislation.
Now I am eager to hear today from VA about how they plan to
address the challenges of the veterans' caregivers and the
community that they serve.
We also look forward to learning from our expert witnesses,
but most importantly, we will hear directly from Vanessa Chism,
an Elizabeth Dole caregiver fellow who cares for her husband
every day. Her testimony will provide a powerful perspective on
the day-to-day life as a veteran caregiver.
I would also like to welcome the Elizabeth Dole caregiver
fellows who are advocating for caregivers on Capitol Hill
today. I am glad and especially would like to welcome Theresa
Coomer from the great State of Illinois. Thank you for being
here. Thank you for your dedication and sacrifice.
We see you, all of you caregivers, and as long as I am in
charge of this committee I will make sure that your voice is
heard.
With that, I now recognize Ranking Member Takano for his
opening statement.
OPENING STATEMENT OF MARK TAKANO, RANKING MEMBER
Mr. Takano. Well, thank you, Mr. Chairman.
Caregivers are an indispensable component of the complex
network of healthcare delivery for our most vulnerable
veterans. As we can all see from RAND's new report, caregivers
are not only partners, children, friends, neighbors, and loved
ones but also a critical lifeline for those who are living with
the visible and invisible wounds of war.
They take time out of their own lives and make sacrifices
every day to ensure that veterans in their lives have the best
possible healthcare and highest possible quality of life.
They wear many hats. They are advocates for veterans'
healthcare needs, carers who help veterans with daily tasks,
and often the most trusted members of their veteran support
systems.
Together with their veterans, they often must navigate a
complex system of services and supports, overcome hurdles after
bureaucratic hurdle, often that expense of their own mental
health and financial well-being.
I am glad that we can gather here today to acknowledge the
tireless and priceless sacrifices made by veteran caregivers
and to ensure that we are doing all we can to provide them with
the support and resources they deserve. I look forward to
hearing from RAND and the Elizabeth Dole Foundation (EDF) about
their new report.
I am interested in hearing more about what they found about
military and veteran caregiving, the military and veteran
caregiving population and how its needs have changed over the
past 10 years.
I am also glad we will have the opportunity to hear first-
hand from Ms. Vanessa Chism, who has been a full-time caregiver
for her Army veteran, Cody, for the last 15 years. The
perseverance and resilience she, along with her three children,
have shown in caring for Cody are nothing short of remarkable.
I look forward to hearing from other witnesses on panel two
about how they are working to support caregivers and their
recommendations to continue to support this vital population.
Much progress has been made but there is so much more to be
done.
Finally, I look forward to hearing more from VA about how
it plans to strengthen and expand services and supports for
caregivers. I hope we will hear more today about when VA
finally plans to issue its notice of proposed rulemaking for
the Caregiver Support Program (CSP).
Legacy participants of the Program of Comprehensive
Assistance for Family Caregivers have been waiting in limbo for
years to find out whether they will be able to stay in the
program and continue receiving the stipends and services they
rely on.
Now, before I close, I want to acknowledge the advocacy of
several witnesses on our panel for H.R. 542, the Elizabeth Dole
Home Care Act, which was authored by my colleague
Representative Julia Brownley.
Now, this legislation would be transformative for elderly
and disabled veterans and their caregivers. It would enable
veterans to remain at home, safely age in place, and avoid or
delay admission to nursing homes and other costly institutional
settings of care.
It will also help better connect veteran caregivers to
respite care and other supportive services that can help them
care for veterans.
In addition, this legislation will help improve VA's
coordination with other Federal long-term care programs that
promote aging at home. Now, for many Veterans Service
Organizations (VSO), the Elizabeth Dole Home Care Act has been
a top legislative priority since its original introduction in
2022.
I, too, want to see this legislation enacted as soon as
possible. Ensuring that VA can serve all veterans and
caregivers of every generation is critical. VA must have the
resources it needs to continue to build capacity and modernize
infrastructure so that we can have the very best services for
those who have earned them.
What this means is doing the hard work of putting VA on the
right track with regard to the balance of healthcare dollars in
both direct VA care and community care.
Now, this has become even more important with the thousands
of veterans coming into VA for the very first time with the
successful implementation of the Sergeant First Class Heath
Robinson Honoring our Promise to Address Comprehensive Toxics
(PACT) Act. That means every piece of legislation we move
forward must recognize and support the need for that balance
between direct care and community care.
H.R. 8371, the package that many of you have advocated for,
does not do that yet. It is 90 percent of the way there, but
the remaining parts need to be reconsidered and amended. I
appreciate your advocacy but I have been clear about what
changes I think are absolutely necessary to ensure the solvency
of VA. Without those changes I simply cannot support it at this
time.
However, as I have said repeatedly, I stand ready to work
together on an outcome that meets our goal of serving veterans
and those that care for them. If everyone is willing to work in
a bipartisan way, as has been the practice of this committee, I
do think we can get that accomplished.
Thank you, Mr. Chairman, and I yield back.
The Chairman. Thank you, Ranking Member Takano.
We will now turn to our witnesses in the first panel.
Testifying before us at the first panel is Dr. Colleen
Richardson, executive director of the Department of Veterans
Affairs, Caregiver Support Program. She is accompanied by Ms.
Laura Duke the chief financial officer of VHA.
Dr. Richardson, you are recognized for 5 minutes for your
opening statement.
STATEMENT OF COLLEEN RICHARDSON
Dr. Richardson. Good morning Chairman Bost, Ranking Member
Takano, and members of the committee. I appreciate the
opportunity to discuss VA's Caregiver Support Program. I am
accompanied today by Ms. Laura Duke, VHA's chief financial
officer.
As a Navy veteran, former caregiver, and the first clinical
psychologist with Marine Corps' Wounded Warrior battalion at
Camp Pendleton, I understand first-hand the important role
caregivers play in the lives of our veterans.
I am honored to serve as the leader of the VA's Caregiver
Support Program. This is not just a job for me. It is personal.
My goal is always to lead with honor, courage, and commitment,
the same values I learned while serving with the Marines.
I value delivering supports, education, resources, and
services to our caregivers through our two national programs,
the Program of Comprehensive Assistance for Family Caregivers
and the Program of General Caregiver Support Services, PGCSS.
Each year I designate a theme which drives the vision and
the operational focus for the year. Annual themes are
identified using feedback from caregivers, veterans, staff, and
strategic partners such as Veteran Service Organizations,
Members of Congress, and others.
In Fiscal Year 2024, the theme, the Year of the Caregiver,
the Whole Caregiver, was focused on enhancing the delivery of
clinical support services to caregivers and implementing other
programmatic and process improvements. I am excited to share
the progress we have made toward some of those initiatives.
First, we recognize and know the importance of Veterans
Integrated Service Networks (VISN) to serve as subject matter
experts on the benefits of respite, respite services, and
respite funding.
As a result, we have seen tremendous growth in the
utilization of respite care, which has increased 278 percent
since Fiscal Year 2022. We are thrilled to see more caregivers
taking advantage of this well-deserved benefit.
Additionally, CSP implemented a virtual psychotherapy
program for caregivers, or VPPC. Through the VPPC, VA is better
able to address and provide the mental health counseling family
caregivers request and deserve.
CSP has activated hubs in all 18 VISNs. The VPPC is on
track to complete over 14 psychotherapy appointments this
fiscal year.
Just when we fly we all hear the safety instructions of air
masks deploying from the ceiling, put on your own masks before
helping others. This applies to our caregivers.
We need to support them to take care of themselves so that
they can take care of their veterans. This is what respite and
mental health care are all about.
Finally, we heard overwhelmingly from caregivers of their
desire to receive Cardiopulmonary Resuscitation (CPR) training
so we made it available. Excuse me. CSP partnered with VA's
Center for Development and Civic Engagement, and similar, to
design a process to train caregivers in CPR.
CSP has provided educational support such as CPR and basic
life support certification to caregivers nationally. Today, CPR
training for caregivers has been implemented at 70 sites and
continues to grow. These trainings have been highly requested
by caregivers and empower them with the lifesaving skills
needed to support their veteran in the time of an emergency.
I could talk about many other innovative ways we are
supporting caregivers through CSP, but these milestones do not
overshadow VA's recognition and my recognition that there is
more work to be done in support of our caregivers, and
specifically, more work to be done to improve PCAFC.
While I am proud of all that we have accomplished and the
hard work and dedication of our employees on the Caregiver
Support Teams that exist at every VA medical facility, I also
recognize that there is more that we can do.
We have heard through various engagements and listening
sessions that some of our evaluation for criteria for PCAFC is
too restrictive. We have taken a close look at all aspects of
PCAFC to identify areas where we need to get better.
As announced in the spring unified agenda, VA intends to
issue a notice of proposed rulemaking to propose amendments to
PCAFC eligibility criteria and definitions and to consider
other changes to the evaluation processes. I am pleased to
share that a notice of proposed rulemaking was submitted to the
Office of Management and Budget (OMB) this year.
I am limited in what I can share as a rule remains under
review while we continue the deliberative process with OMB
regarding proposed changes. However, once the notice of
proposed rule is published, VA will announce this information
widely and encourage submission of public comments and feedback
to identify whether additional changes may be needed.
This marks a significant step toward VA's efforts to
further improve PCAFC and deliver a program which meets the
needs of eligible veterans of all eras and their family
caregivers.
I appreciate the continued support of this committee, VSOs,
some of whom you will be hearing from on the next panel, and
the vast caregiver community. Your support and advocacy are
essential to supporting our Nation's veterans, as well as those
who care for them.
On behalf of the Department of Veterans Affairs and the
Caregiver Support Program, we thank you for the opportunity to
be here this morning and appreciate the continued
collaboration.
[The Prepared Statement Of Colleen Richardson Appears In
The Appendix]
The Chairman. Thank you, Dr. Richardson and Semper Fi.
We are now going to go to questions and I will recognize
myself for 5 minutes, as soon as I mark my script where I am
at.
Dr. Richardson, why has VA delayed publishing the pending
caregivers PCAFC proposal rules for 2 years?
Dr. Richardson. Thank you for the question. CSP and VA has
taken a step back these last 2 years through community
engagements, meeting with VSOs, external partners. I thought it
was really important that we gather the information that they
felt was critical and what we are missing today to be
successful in implementation of this program.
We have taken that time these last 2 years to really look
at the criteria, where it stands today, and what changes need
to be made. As I mentioned, sir, we have submitted that notice
of proposed rulemaking to OMB and we continue that deliberative
process and discussions with them today.
The Chairman. You know, 2 years is a long time. I know
government moves slowly, but our witnesses on the second panel
have concerns about the holdup. What would be your answer to
them, other than the answer that you just gave? Or would it be
the same?
Dr. Richardson. I would say, you know, when we opened this
program up the first time on October 1 of 2020, we did not get
it quite right and I do not want that to happen again. Now that
I am leading the Caregiver Support Program, I think it is my
duty and obligation to these fellow caregivers to make sure
that we get it right this second time around. I want to be
careful in that process.
The Chairman. Well, caregivers in Illinois are having
issues accessing respite care. How can VA improve access to
these programs designed to give caregivers a break?
Dr. Richardson. Yes, sir. We noticed that as well, sir. We
had a very low respite utilization when I first came onboard.
Roughly around 7 percent of our budget was going toward respite
at that time.
What we heard through listening sessions, I have probably
done over hundreds of listening sessions both in-person and
virtually with caregivers across the country, took an
opportunity to see what it was that they needed to be
successful in this caregiving journey and also to identify what
they were not identifying for themselves.
As we all know, caregivers hardly ever take the time they
need for themselves in their caregiving journey. We heard
respite was one of those things and so what we did was--and now
they are experts and they have gone, I believe, in the train
the trainer model.
They have gone now into the medical facilities and trained
the local staff. We have seen an exponential increase in
respite. It is still not enough. I still think caregivers need
to take more advantage of the respite that is available to them
in both programs.
PGCSS and PCAFC by statute, thanks to Congress, no less
than 30 days of respite is offered to our caregivers across the
country.
The Chairman. Wonderful.
Ms. Duke, why is the VHA budget shortfall requesting via
the Toxics Exposures Fund (TEF) account instead of normal
accounts?
Ms. Duke. To the extent that Congress provided adequate
funding through the creation of the TEF to ensure that we would
be able to continue services for those veterans who have toxic
exposure, I can commit that if Congress provides the shortfall
as requested in TEF we will be able to execute that funding
against the care needs of this population in 2025.
The Chairman. Well, let me tell you what we feel here and,
I mean, the concern I have is that the administration of OMB
and VA are trying to avoid the Fiscal Responsibility Act
spending caps and create a funding gimmick.
That is my concern because the way the TEF is written it
allows you to spend freely and we do not have to always get the
reports back from VA we really like to get on how and when it
is being spent. That is our concern. I think you need to know
that.
Dr. Richardson, no spouse or caregiver often feeling
ignored by the VA--I am sorry--non-spouse caregivers often feel
ignored by the VA. What support services does VA offer to
parents and/or children and/or non-spouses that are the
caregiver?
Dr. Richardson. Sure. For the Program of Comprehensive
Assistance or the Program of General Caregiver Support we can
offer supports and services if they are enrolled in either one.
For PGCSS, our Program of General Caregiver Support
Services, there is no application for that program. As long as
a veteran is enrolled in VHA healthcare and identifies somebody
that takes care of them, whether it is helping them with day-
to-day tasks such as dressing or bathing or helping them with
supervision or protection or instruction, we can offer supports
and services to that particular caregiver.
It does not matter if they are spouse or a non-spouse. Then
we partner with other organizations to help children and
families across the country.
The Chairman. How are you getting that message out?
Dr. Richardson. Upon initial application. We have a couple
of things that we do right now. We realize that there are a lot
of people out who still do not know about the Caregiver Support
Program, so I hired an Outreach Coordinator within the VA
Central Office and a Communications Director.
We have attended, I think, over 70 national events in the
last couple of years just trying to get our word out there that
we have this program and it is available to all caregivers and
Veterans who are enrolled in VHA healthcare.
The Chairman. All right. Thank you. My time has expired.
I now recognize the Ranking Member, Representative Takano.
Mr. Takano. Thank you, Mr. Chairman.
My first question is to Dr. Richardson. In your testimony
you state that the number of caregivers using respite care has
increased by 278 percent since Fiscal Year 2022, which is just
2 years ago. What percentage of participants in the family
caregiver program have actually been served?
Dr. Richardson. Thank you for that question. You are
talking about the Program of Comprehensive Assistance, sir----
Mr. Takano. Yes, ma'am.
Dr. Richardson [continuing]. for Family Caregivers? I do
not have that number right in front of me, sir, but I can get
that for you if you would like.
Mr. Takano. I would appreciate that. How much of this
respite care is VA providing in-house versus referring to
private sector providers where veterans and their caregivers
are in competition with non-veterans who may have more
resources to pay out-of-pocket?
Dr. Richardson. Yes, sir. A majority of the care is
provided in the community, so respite care is something that we
contract with out in the community to provide services for our
veterans in their home.
We realize that this is not always the best option for our
veterans, so today we are piloting something called VDC
Respite, Veteran-Directed Care Respite, is being piloted in 11
sites across the country, some of them being rural sites as
well.
What we realize and what we have heard through listening
sessions is that our veterans and caregivers would prefer
somebody that they know to come into their home to care for
their veteran, and we agree.
We have partnered with VDC. As long as a veteran is duly
enrolled in VDC and CSP PCAFC, we will pilot this program to
see how well it works with our veterans across the country.
Then I hope to expand that as we move forward into the future.
Mr. Takano. All right. Well, thank you. Yes, I was
concerned to read in Ms. Chism's testimony that in the past 12
years that she has participated in VA's Family Caregiver
Program she has never been able to access respite care, nor has
she been able to enroll in the Veteran-Directed Care Program,
which would provide funds to hire someone to help.
What are some ways that you are working to improve
caregivers' access, you have already mentioned some, but to
improve the caregivers' access to respite care?
Dr. Richardson. Sure. We trained those 18 champions across
the country to make sure that our staff understood because we
know respite is different at every VA across the country.
Community resources are different across the country depending
on where you live and how you get those services.
That is something that we have really focused on this last
year and there is always work to be done. We are fluid and
flexible, and I want to continue to move in that direction.
Mr. Takano. Dr. Richardson, well, thank you for that. One
thing that struck me from reading RAND's new report is that
more and more caregivers are reporting a need for mental health
services but they often cite a lack of time to travel to mental
health appointments as the reason why they cannot. They do not
seek it out.
I am glad to hear that VA has implemented a virtual
psychotherapy program to help address this, and it seems like
even community virtual psychotherapy programs are, kind of,
becoming more of the norm and that this program has nearly had
14,000 visits.
Does that number reflect the total number of requests for
care that have been received? Or is there still unmet demand
for the services beyond the nearly 14,000 visits that you have
provided?
Dr. Richardson. Thank you, sir, for that question. I think
there is always a demand for mental healthcare and sometimes
people do not recognize that they have that demand for mental
healthcare.
I think some of the things that we do, we do that
traditional psychotherapy, as we mentioned, the virtual
psychotherapy hubs that we offer for a veteran, or excuse me,
that we offer for our caregivers enrolled in PCAFC.
The other thing that we do are in-person services and you
are right. 51 percent of the caregivers that we surveyed asked
for virtual psychotherapy. It is often hard for them to get the
veteran loaded into the vehicle, bring them to the local
medical facility, and take advantage of those in-person
appointments. That is what we hired our own staff, 54 staff
across the country to specifically care for our caregivers.
In addition to that, we are training our--this is the first
of its kind. I know of no other program that exists that
focuses on the specific needs of caregivers. As a clinical
psychologist, measurement-based care and evidence-based
treatment for the treatment of our caregivers is really
important to me and so that is something that we focused on
this year as well.
We are training our providers in evidence-based care for
our caregivers. Then we are also measuring that to see how it
is impacting their quality of life.
Mr. Takano. Well, Dr. Richardson, even though a veteran and
caregiver may be found ineligible for the Program of
Comprehensive Assistance for Family Caregivers, they are quite
likely to be eligible for a variety of other institutional
programs that VA administers.
However, we often hear from caregivers and advocates that
the Caregiver Support Program is not always facilitating warm
handoffs to other services. To what extent is VA working to
improve coordination among its programs to ensure that warm
handoffs are made?
I may need to just take this back because I do not want
to--we have a lot of numbers here. I do not want to intrude on
other members' time. Maybe you can get that back to us or maybe
another member will give me their time.
I yield back, Mr. Chairman.
The Chairman. Thank you, Ranking Member.
Representative Rosendale, you are recognized for 5 minutes.
Mr. Rosendale. Thank you very much, Mr. Chair, for holding
this hearing today.
The people who care about and care for our veterans, better
known as caregivers, play a vital role in supporting the health
of our veteran population.
Unfortunately, these caregivers often do not get the
necessary attention and support they deserve. I am grateful
that this committee is conducting this hearing.
Caregivers, typically family members or close friends, help
veterans with necessary activities that are essential to
living, including eating, dressing, and bathing. Caregivers are
the biggest advocates for veterans, helping them get to and
from doctor's appointments, ensuring that their bills are paid,
and interests are being looked out for.
Being a caregiver entails great sacrifice, and we have seen
touching stories of individuals giving up their prior careers
to care full-time for a loved one.
A recent study from The Associated Press-National Opinion
Research Center (NORC) Center for Public Affairs Research found
88 percent of Americans would prefer to receive any ongoing
living assistance they need as they age at home with loved
ones, which is the same information that you are sharing with
us.
Just 12 percent want to receive care in a senior community
or nursing home. Caregivers allowed veterans to live at home
surrounded by their loved ones.
I want to ensure that Congress continues to give needed
support to caregivers so they can continue to care for our
Nation's heroes.
Dr. Richardson, I have heard first-hand reports from many
individuals who want to be caregivers but they feel they lack
the necessary qualifications. The RAND report highlighted this
fact.
What steps are the VA taking to ensure that caregivers have
the proper training to care for veterans?
Dr. Richardson. Yes, sir, thank you for that question. As I
mentioned, we have done listening sessions, but in addition to
listening sessions we have done Veteran Signals (VSignals)
surveys. We have a 26 percent response rate, which is extremely
high.
In this we look at those opportunities to see what it is
that caregivers need to be successful. We may think we know
what they need but that is not always a hundred percent
accurate. It is important for me to hear from the consumer of
what we do.
Some of those things that we have heard just in the last 2
years have been mental health, we have gotten that. CPR, we
have done that. Respite, we have done that.
We have also heard they need additional assistance with
just different diagnoses, different ways to be successful in,
for example, transferring their veteran from the bed to the
chair or from the commode back to the chair, in and out of the
bathtub.
We have also heard, you know, as you know, veterans of
different service areas have very different and unique
caregiving needs. They are not the same amongst the service
eras.
What we have also heard is that our caregivers need not
only CPR but we are calling CPR plus. We have partnered this
year, so this coming year, we will have diabetic emergency. We
will have first aid, falls, head injuries, (SCI). We are adding
more and more resources based on what we hear, not on based
what we think they need.
Mr. Rosendale. Very good, very good. Thank you so much.
Ms. Duke, I am going to go into the financial end of these
things. Obviously, we want to make sure that the proper funding
is provided and that it is being fully utilized.
As you know, $3.4 billion of your $12 billion shortfall is
for medication. You have explained this as a result of new,
high cost drugs that do not have generic versions.
The main drugs are injectable diabetes and weight loss
drugs and resmetirom for liver disease. How much in fiscal 2024
did the VHA spend on weight loss and injectable diabetes drugs?
Ms. Duke. I do not have that number with me but we will get
it for you.
Mr. Rosendale. Yes.
Ms. Duke. I do think that the reason for including it in
the shortfall analysis was the concern that this would be a
growing need for our veterans based on the trends that we have
seen outside of VA.
Mr. Rosendale. It is and this is exactly the line of
questioning I want to get to because as in my previous job as a
commissioner of securities and insurance for the State of
Montana, I did an incredible amount of research on healthcare
and the cost of pharmaceutical drugs and know that it is a
major driving cost for healthcare.
How much do you plan on spending in 2025 on these
medications, fiscal 2025?
Ms. Duke. I would have to get that specifically broken out
by medicine.
Mr. Rosendale. Okay. Please get that information for me. A
recent study found that those taking any form of semaglutide
lost an average of 39 percent of muscle mass, of muscle mass.
Another study found that these weight loss drugs come with
a heightened risk of gastrointestinal problems, specifically a
3.67 time higher risk of stomach paralysis. We also know that
the need for these drugs to be effective for weight loss it has
to be taken for a lifetime.
Why does the VA think it is a good use of taxpayer money to
spend thousands of dollars per month per veteran on drugs that
have so many side effects, require a lifetime of taking for any
benefit, are way more expensive than in Europe, and fail to
address the root cause of the veteran's metabolic dysfunction?
Ms. Duke. I will take that back to our pharmacists who make
the ultimate determination regarding what the standard of care
is. I would just say that----
Mr. Rosendale. This has got to be a coordination not just
pharmacists, but the physicians within the VA have to start
addressing the root cause of the problem instead of just
treating the symptoms. Okay?
That is what we need to get at and the food, the diet, the
exercise. We have to begin to incentivize that to get our arms
around obesity instead of just giving everybody a pill.
Thank you, Mr. Chair. I yield back.
The Chairman. Thank you.
Representative Brownley.
Ms. Brownley. Thank you, Mr. Chairman and thank the
panelists for being here.
Dr. Richardson, my first question is to you. I think we are
all very much aware that VA suspended in 2022, suspended its
annual reassessment of eligibility for the legacy cohort within
the Family Caregiver Program and this pause was to better
understand the impacts of that reassessment criteria.
We all know, I think we probably all of us here, agree that
ineligibility for this program would certainly upend the
caregivers' ability to do their job and would certainly upend
the veterans who need these services as well.
My bill, the Elizabeth Dole Home Care Act, I think would
provide a really more than adequate transition for both these
folks in the legacy cohort, as well as new caregivers and new
veterans who are going to need these services. I know that you
have made it very clear that you are not going to provide us
with the criteria that you are evaluating now, but do you
believe that the Elizabeth Dole Care Act would provide that
transition successfully?
Dr. Richardson. Thank you, ma'am, for that question. I
believe VA has offered TA (phonetic 2:07:25) and views on that,
and I apologize, ma'am. I do not have that in front of me to
further comment from VHA's standpoint on that.
Ms. Brownley. Are you aware of the bill?
Dr. Richardson. Yes, ma'am, I am.
Ms. Brownley. You cannot make a personal assessment or a
comment?
Dr. Richardson. Ma'am, I always appreciate the opportunity
to provide feedback on opportunities like this, but I want to
make sure I am in line with what the VHA has provided as well,
ma'am.
Ms. Brownley. Okay. Almost everybody has asked about
respite care and I wanted to ask briefly about this, too. You
know, in Ms. Chism's testimony, as I think the ranking member
mentioned, that for 12 years she was unable to receive respite
care. For 12 years she was unable to receive respite care.
Then when she was finally able to receive it she was told
it would be she would have to give a 2-week notice in order to
get it. You know, having to rearrange her whole schedule and so
forth and perhaps miss a child's recital at school or whatever
it might be that she needed it for.
I just do not understand why this is happening. I do
understand why it is happening. There are not enough respite
providers out there. I do not understand that if you have got a
caregiver who is providing care for a veteran on a full-time
basis that for 12 years she is unable to receive any kind of
respite care?
You know, I would just want to hear your comments with
regards to that. I want to know that are the caregiver
coordinators across the country reporting back to you how many
people who are asking for respite care who cannot receive
respite care?
Dr. Richardson. Yes, ma'am. I think it is completely
unacceptable on every level. Caregivers should have every
opportunity available to them to take the respite that they
deserve in order to take a break. It is unacceptable.
I think my staff does let me know, and I also meet with the
caregivers to also find out things.
Ms. Brownley. Whoa, whoa, they let you know? Is this just
sort of a casual thing? They will call you up and say, oh, by
the way, I have a couple of people out here that I cannot
provide respite care to? Or is it within your system to report
that so you have the accurate data?
Dr. Richardson. Yes, ma'am. It is within my system to
report that, that we have the accurate data. We actually pay
out the respite out of my program office so I am aware.
That is what was brought to my attention, that we had such
a low underutilization of respite across the country about a
year ago. That is why we started the respite champions
initiative so that we can increase that and make sure that our
caregivers are getting that respite care they deserve.
Ms. Brownley. Do you know how many respite people that you
need to really satisfy the need out there across the country?
The VA has this, sometimes has an issue of doing really well in
one area but not so well in another area.
Dr. Richardson. Yes, ma'am. I think it really depends on
the caregiver and the veteran. Some of them need 24-hour care.
Some of them need care for 2 hours twice a week. It really
depends on the location and what the needs are of that
particular caregiver and veteran.
Ms. Brownley. Thank you. Ms. Chism also submitted in her
testimony the issue around the Veteran-Directed Care Program
that the VA provides and noted that this direct care is not
really offered in certain areas and it is in a very limited
catchment area throughout the country. Can you speak to that
please?
Dr. Richardson. Thank you, ma'am. My understanding of
Veteran Directed Care which, as you know, falls under
Geriatrics and Extended Care (GEC), I believe, is now
attempting to be offered across the country. Happy to take that
back and get you further information from GEC if necessary.
Ms. Brownley. Thank you. I think I would like to know when
it is going to be offered across the country and how long is
that going to take for that to happen. I think it is a very
popular program within the veterans.
Certainly I think, again, the Elizabeth Dole Act addresses
this and addresses the respite issue and certainly, I think, a
successful transition for the legacy cohort and new veterans
and new caregivers to move forward. I would like to have more
specific information.
With that, I will yield back.
The Chairman. Dr. Miller-Meeks, you are recognized for 5
minutes.
Ms. Miller-Meeks. All right. Thank you very much, Chairman
Bost.
I thank our witnesses for appearing here and some of the
doctors were trying to answer the previous question for you,
which my question is somewhat related to that and you may have
already answered it, Ms. Duke.
You are requesting $1 billion for high cost drugs. I am not
going to go into the necessity for them because I think there
is value in that, but it is a round number and I believe you
have described it as a guess.
Do you think it would be more appropriate to come back to
Congress and request the amount of money once you have a more
reliable estimate? Or is it an estimate because you are
anticipating growth in the need of those medications?
Ms. Duke. Thank you for the question. It is clearly the
latter. It is the recognition that this is evolving and
becoming a fiscal pressure within our purview, not specifically
the semaglutides, but pharmacy growth was part of what
necessitated us coming forward with a shortfall.
We wanted to make sure that we were transparent about the
needs and also not that we would have to make any decisions
regarding pharmaceuticals based on having to make budget
tradeoffs next year. We always want to provide to our
healthcare professionals what is necessary for the veterans'
treatment.
Ms. Miller-Meeks. You estimated in your Fiscal Year 2025
budget that the growth of community care spending would drop
from 14.8 percent to 12 percent. Now, you are estimating that
it will increase to 16.5 percent and this difference accounts
for $1.9 billion of your budget shortfall. Having taken care of
my mother with Alzheimer's and my mother after my father's
death and he was retired military, why would you have assumed
in your budget that community care would shrink? I mean,
certainly, in all of your listening sessions it is
extraordinarily popular.
People, if they can, would rather be in their home with
people that they know and with whom they have a relationship.
Ms. Duke. It is not actually that we anticipate the program
shrinking. It was the rate of growth. We have always
anticipated that community care obligations would continue to
grow. It was how quickly.
This was, again, going back to post-John S. McCain III,
Daniel K. Akaka, and Samuel R. Johnson VA Maintaining Internal
Systems and Strengthening Integrated Outside Networks Act
(MISSION) Act trying to figure out what is the balance of the
way to best serve veteran needs in light of the fact that we
have facilities where we do and veterans live where they do.
This was a readjustment of the estimate of how much
community care would need to grow to continue to provide
veterans with the care that they are seeking.
Ms. Miller-Meeks. Well, you know, then I would have
anticipated as a budget person and to my brother-in-law, who is
as an accountant, that you would have kept the estimate the
same rather than reduce it. I just want to make sure that that
is not a result of the VA trying to restrict community care
access.
Ms. Duke. No, ma'am. We are----
Ms. Miller-Meeks. Thank you.
Ms. Duke [continuing]. committed to providing care wherever
the veterans need it.
Ms. Miller-Meeks. Thank you.
Dr. Richardson, the RAND report indicates that many
caregivers feel unrecognized and unsupported by the VA, and I
think you might have addressed this a little bit, but what
immediate actions will the VA take to ensure caregivers are
acknowledged as the key partners in veterans' care? That
includes making decisions for veterans.
Dr. Richardson. Yes, ma'am. I think that that is a critical
and crucial role for our caregivers. Oftentimes our caregivers
know more about the veteran than the veteran does him or
herself.
I agree with you. I think this is an opportunity for us to
continue to collaborate across VA medical centers across the
country, especially, probably, within primary care where we see
most veterans come in first and have that opportunity to make
sure that we are recognizing those caregivers.
One of the things that we have already done is caregivers
have their own medical record when they are identified as
caregivers in VHA healthcare system.
Ms. Miller-Meeks. Is there a training that is required in
primary care clinics for this relationship between the
caregiver, the veteran, and the primary care provider?
Dr. Richardson. Yes, ma'am, there is. We have the Campaign
for Inclusive Care that we have partnered with several years
ago with the Elizabeth Dole Foundation to ensure that
caregivers are being included.
What I understand from what you are saying and what I have
also heard from caregivers is that has not been effective
enough and we need to do better.
Ms. Miller-Meeks. Speaking of the Elizabeth Dole
Foundation, you noted in your testimony that several programs,
including the VHA's family resource coordination program, have
been delayed or limited since the announcement of the budget
shortfall.
Can you discuss the decision to limit the family resource
coordination program, which, in essence, family caregivers are
saving the VA money which is intended to connect caregiver
families with needed resources from a phased implementation
plan to a pilot program?
Dr. Richardson. Yes, ma'am. I am happy to connect with our
partners and Care Management and Social Work on that question
as that falls under their purview.
Ms. Miller-Meeks. Okay.
Thank you to our witnesses.
Thank you, Chair Bost. I yield back.
The Chairman. Representative Pappas.
Mr. Pappas. Thank you. Mr. Chairman.
I want to thank our witnesses for their testimony and it is
great to see a room full of veterans, caregivers, and advocates
who are part of this conversation. We appreciate the work that
you all do to help us figure out the right way forward.
Dr. Richardson, can I ask you a question? You know, we are
so appreciative of what caregivers, family members, friends,
and countless others who take care of our veterans do day in
and day out. Unfortunately, some face a situation where a
veteran passes away and we need to ensure that there is
communication with the individual so that they can get the help
they need through VA's Office of Survivor Assistance.
We have heard from caregivers who are unaware of these
resources and are often scrambling to access the information
that they deserve. I am wondering if there are any warm
handoffs to caregivers in this situation and what greater
coordination can you provide with Veterans Benefits
Administration (VBA) to make sure these individuals get the
resources and help they need?
Dr. Richardson. Sure. Thank you for the question. You are
correct. The caregiver to survivor journey is in and of itself
a challenging journey and we want to make sure that we have
those resources and make it as smooth as possible for our
caregivers who are transitioning to that role.
There is a survivor and memorialship program that has been
set up under Care Management and Social Work this past year.
We have a very close partnership with that organization or
within that program office, excuse me, and will plan to
continue to work with them. I think we could do a better job on
that collaboration piece as well.
Mr. Pappas. Well, we know that caregivers often sacrifice
financially and on average this is quantified to be $8,500 in
out-of-pocket costs that caregivers incur every year and $4,500
in earnings that they forego. Certainly supporting survivors as
caregivers make that transition is incredibly important.
What other financial help is provided to caregivers? Any
resources or supports that exist to make sure that they are
able to make ends meet?
Dr. Richardson. One of the things that we offer in PCAFC is
financial and legal services for our caregivers enrolled in the
program. They have opportunities to take advantage of how to do
living wills, living trusts, budget planning, those kinds of
things so that they can prepare for those potential things that
may happen in the near future.
Mr. Pappas. I noticed a number of folks that are not
participating in support services. I think on average it was 40
percent to 60 percent depending on the age group of the
caregiver.
You talked a lot about the respite care and how utilization
has increased since you have gotten the word out, but it
appears that that was an issue where it was not a lack of
demand, that you have to work on the supply side of things to
make sure that people could get access to those services in a
more efficient fashion.
Are there other categories of support services that you are
going to look to expand or increase or just ensure that folks
know about them? I guess, what is the reason why so many are
not taking advantage of these services?
Dr. Richardson. Sure. Thank you for the question. There are
several things that we are going to expand. I think one of the
things that is important that we are going to expand this year
is peer support mentoring. We know veterans appreciate the
opportunity to meet with fellow veterans who have been there,
done that, understand what they have gone through.
It is the camaraderie. It is that automatic connection, and
we know that happens in the caregiving community as well. We
have committed to having one peer support mentor for the
Caregiver Program across the country in every VA medical
facility. That is one piece of it.
The other thing that we have done is we hear various things
from caregivers. While they love that opportunity to connect
they cannot always come in person so we have those virtual
offerings.
We have Coaching into Care health, health and well-being
coaches that really focuses on the individual caregiver and not
what is the matter with them but what is it that matters to
them.
There is just a lot of variety of services that we offer
both virtually and in-person for our caregivers, and I think we
need to continue to do a good job with that as we go forward.
Mr. Pappas. You mentioned a new initiative around CPR
training for caregivers. How is that going and how is VA
getting the word out to individuals about this new service?
Dr. Richardson. Yes, sir, thank you. It has gone
exceptionally well. We have heard overwhelmingly, because we
survey our caregivers after the fact, and it has been very,
very well-received across the country.
Today, we are at 70 medical facilities. Some of our
caregivers can get actual BLS certification and CPR
certificate, or excuse me, not BLS but CPR certification.
As we go forward we want to have this at every VA medical
facility across the country. I hope that we can do that this
year.
In addition, like I said, we are doing that CPR plus, so
helping them with diabetic emergencies, falls, spinal cord
injuries. We have also put together mobility transfer videos
for them to watch and observe and learn from that as well.
Mr. Pappas. Do you know how many individuals have gone
through the program, have taken the training?
Dr. Richardson. Probably several thousand, sir, 7,000 to
10,000 I would guess. Quite a few.
Mr. Pappas. Thank you.
Dr. Richardson. Yes, sir.
Mr. Pappas. I yield back.
The Chairman. Thank you.
Dr. Murphy, you are now recognized.
Mr. Murphy. Thank you, Mr. Chairman.
Thank you guys for coming today. I really deeply appreciate
the attention that we pay for our caregivers.
I just still see a lot of patients and oftentimes it is up
to the wife or truly the oldest daughter that comes in and
cares for their father or their mother, whoever the veteran is,
and the sacrifice that they go through.
I just want to follow up on one other thing about the
semaglutides. You know, it is not only the VA's budget that is
getting busted. It is Medicare's budget. It is private
insurance companies' budget.
I think actually we need to have a American conversation as
to dialing back this. This should not be, hey, if I want to
lose some weight I get a drug. It should be really much more of
a metabolic discussion.
It is going to be germane really to the entire country, not
just to the VA, but it needs to be done, I think, in a much
more academic and research manner, not only for the sake of
saving costs but some of the deleterious effects that we talked
about.
There are some good effects, decrease in kidney disease and
some of the other things, but I think it needs to be a national
discussion. Hopefully it comes down to the VA and hopefully we
stop spending the billions of dollars on this drug that has
become now, kind of, more of a cliche that you see folks on.
I will say this. Ms. Duke, is there anything that you guys
have now had to deal with as far as more costs with the PACT
Act with any of these instances that you are having to deal
with?
Ms. Duke. So, PACT----
Mr. Murphy. As far as, I am sorry. As far as I am
understanding that is really one of the major drivers for this
huge deficit.
Ms. Duke. Correct. The PACT Act both expanded eligibility
so veterans who previously we did not have contact with could
come in for care. We have seen not just that we have new
enrollees, but those who are already enrolled are now more
likely to take advantage of the services because of the
outreach that we have provided.
That is what is driving that need for more care, both in
the community and in the direct care system, which led us to
revisit our budget estimates for the 2025 budget.
Mr. Murphy. Yes. I mean, that is a good thing. Again, I
think all of us on this committee are very concerned about the
efficiency and the management of dollars within the VA system.
You know, as I have said in this committee before, we spend
5:1 compared to the British healthcare system on our veterans.
Not that that is wrong, but it is inefficient. We are not doing
something right or not doing something that I think the private
world would ever stand for.
Dr. Richardson, just getting back, because I know I want
to--there are a couple of statistics here really that were
bothersome.
Only, I guess, half of the folks who are caregivers
participated in programs offered by the VA. What is being done
as far as education to making sure that these folks take
advantage of the programs that are out there for them?
Dr. Richardson. Sure. Thank you for that question, sir. As
I have mentioned earlier out, we have hired an Outreach
Specialist within the program. We have partnered with our local
VA medical facilities and we try to attend as many national
outreach events as possible.
Veterans in the veteran community, when you know somebody
you know somebody who knows something.
Mr. Murphy. Yes.
Dr. Richardson. If we can get the word out to just a few
people we know it will spread quickly. We have seen that, sir,
in the last month alone. I August we had 9,600 applications
come in our door, which is the largest volume of applications
we have seen all Fiscal Year for PCAFC.
I have to make some assumptions that I hope that this
outreach is working the way it is intended to.
Mr. Murphy. Yes. You cannot make people sort of yourself
and you can educate them that things are available.
One other thing I did want to follow up with, this
committee and all of us are very, very concerned about suicide
amongst our veterans themselves. I personally think we can do a
hell of a lot more at the VA. We are not doing the job that we
should.
Then this translates also to caregivers because there is so
much depression, there is so much isolation, there is so much
sacrifice that goes into that. Can you speak a little bit about
what you guys are doing for the caregivers themselves because,
you know, it is a common thing amongst people of my maturity
that we are becoming parents to our parents.
This is not just germane to the VA but it is also other
folks and it is a life-changing event and transition. Not only
we mourn the loss of a parent but we also mourn the loss of our
life. Can you speak to that a little bit with suicidal
ideations and some of the other things because I know it is
much higher in caregivers?
Dr. Richardson. Yes, sir, absolutely. Thank you for that
question. As I mentioned earlier, we have the virtual
psychotherapy programs that are available to our caregivers now
across the country. It is a simple referral from the Caregiver
Support Team at the local medical facility to get them into
that appointment.
Typically we are getting them in and getting phone calls
out within 5 days. I think that is one aspect, right? Not
everybody wants traditional mental health therapy. A lot of
people want nontraditional.
A lot of veterans want nontraditional mental health therapy
and so that is the peer support mentoring where that comes in,
their ability to connect with somebody who is there, who has
been there in that caregiving journey.
I think we could do a better job of that. That is why we
are going to put peer support across the entire country.
The other thing is what we offer at the local medical
facilities, nontraditional, chair, excuse me, yoga, mindfulness
groups.
We have the Coaching Into Care, the coaching health and
well-being coaches that really focuses on what matters to our
caregivers because their caregiving needs are different than
what the needs are of their veterans that they are caring for.
We have to address them individually based on what they need.
Mr. Murphy. Yes. This is a real problem. I just see just on
a regular basis just the absolute burden that these folks have,
so thank you for your attention.
Mr. Chairman, I will yield back.
The Chairman. Mr. Landsman.
Mr. Landsman. Thank you, Mr. Chair.
Thank you to all of our veterans and caregivers and
advocates. It really is wonderful to see this room full. We
know how much you do and care and we are grateful for
everything that you do.
I want to talk a little bit about the evaluation and data
collection and some of the concerns I think we collectively
share. This committee has heard me preach about continuous
improvement, and I am from Cincinnati.
We have one of the best children's hospitals in the
country, and it is a story I like to tell because I am proud
Cincinnatian, but it is also instructive in terms of how to
approach almost anything.
They became the best or top two, three children's hospitals
in the country by becoming the best at getting better. They
just developed a culture of continuous improvement. Everything
got collected, all of the data whether it was about a procedure
or an experience from a parent or a child. It was constant,
constant, constant.
It is to this day they measure everything and they test and
they take chances and they are not afraid to fail. As a result,
you get the best care in the country.
There is, you know, an evaluation component to everything
we do. An evaluation only tells us what happened and not what
is happening. It does not really tell us what to do moving
forward the way data collection and continuous improvement
does.
Here is what is bothering me. You have got 2 years of
learning, but we do not really have any exposure to that
learning. The evaluation was too restrictive and now it is
going through this rulemaking process. Do not have any real
sense as to how long that is going to take.
You do not need a rule change to collect data, correct? You
do not need a rule change to survey your caregivers and
veterans to find out what is working and what is not working,
correct?
Dr. Richardson. Correct.
Mr. Landsman. You would not need a rule change to use that
data to then get better immediately at what you are, you know,
providing for veterans and caretakers, correct?
Dr. Richardson. Yes, sir.
Mr. Landsman. Then tell me a little bit about the 2 years
and why we do not know what you know in terms of everything
that was learned and what is being asked as part of the
rulemaking process A, B. What is the role of continuous
improvement, if any, as it relates to this work?
Dr. Richardson. Yes. Yes, sir, good question. Thank you. I
think two separate things as I am thinking about this. One is
looking at the specific eligibility criteria that rule is and
definitions that we have used to allow caregivers to apply and/
or get accepted or denied into the Program of Comprehensive
Assistance.
In regards to what you are talking about quality assurance
and quality improvement, overall well-being, how the caregivers
see our program, and how we support them is to me different.
What we have done to address that, we have a VSignal survey
that has gone out.
It has been 2 years in September since we have sent it out.
We have seen nice improvements.
It is for folks enrolled in PCAFC and PGCSS. We have a 97
and 98 percent approval rate across the country with those
numbers so seeing good scores there.
Does that mean that we are perfect? Absolutely not. It just
means that we are taking the opportunity to get feedback on the
care and respect. Do we help them with the support services
that they need? That is important to look at.
The other thing that we have looked at are the processes in
and of themselves, so I brought in a QM team, a Quality
Management, Quality Assurance Team. It is run by an Registered
Nurse (RN).
She oversees the process across the entire country.
We are reviewing charts, records, ensuring that it is
standard and consistent. One VA is one VA but it should not be
one VA is one VA. It should be that your experience at every VA
may be a little bit different but it is standardized and
consistent no matter where you go.
They should have the same experience no matter which VA
they go to. That is something that we have also looked at, very
separate and different than the eligibility piece itself.
Mr. Landsman. With my remaining time I just, it would be
very helpful, I think, appreciating all the questions that we
have to get the data that you have.
Dr. Richardson. Of course.
Mr. Landsman. Everything that you have learned that should
be made public. I mean, you know, I understand a lot of that
has to do with eligibility, but there is still learning in
there that would benefit us as policymakers.
Dr. Richardson. Yes, sir.
Mr. Landsman. Okay, thank you. I yield back.
The Chairman. Representative Van Orden.
Mr. Van Orden. Thank you, Mr. Chairman.
Dr. Richardson, I have got to say that you have been
shockingly competent and transparent. This does not often
happen in our committee hearings with the Veterans Affairs
Administration, so I really appreciate it.
I am the longest serving enlisted member of the military to
ever be elected to Congress in the history of this country. I
get all of my healthcare through the VA or community care. I am
a 100 percent service-connected disabled veteran.
I love the VA. I love my folks in La Crosse and Tomah. I
get these cool glasses there and everyone that checks me in to,
you know, cleaning the place to my primary care, they are
awesome.
Why do not I know about this program? Do you know what I
mean? Is there, like, a flyer at a cork board that I am missing
when I go there to get my physical?
Dr. Richardson. You should absolutely know about this
program, sir. Yes, sir.
Mr. Van Orden. Okay. Do me a favor. Let us walk the dog on
this. You got a veteran that is eligible for this care, right,
safe environment, has got a home and all that stuff and they do
not have, you know, debilitating psychological issues or going
to be violent.
Then so we have that and then we got somebody that wants to
provide care for this person and we have got someone that wants
to provide care for the caregiver, correct?
How do you figure that out? Like, how do you figure out who
the caregiver is, like, who is eligible for it and then how do
you figure out who is eligible to provide care for the
caregiver?
Dr. Richardson. Absolutely, sir, great question. Oftentimes
our caregivers do not recognize that that is exactly what they
are doing.
Mr. Van Orden. Really. Right.
Dr. Richardson. I have taken care of my husband now for 15,
17 years and did not realize that I was a caregiver until I
became the Executive Director of this program.
Mr. Van Orden. All right. That is an issue that we can
actually work on, cannot we? How is the compensation level for
these caregivers and the caregivers and the caregivers
determined?
Dr. Richardson. Depending on the program, so the Program of
Comprehensive Assistance for Family Caregivers is set in
regulation to pay our caregivers enrolled in that program at a
GS-4 pay scale----
Mr. Van Orden. That is GS-4, correct?
Dr. Richardson [continuing]. and based on locality. Yes,
sir.
Mr. Van Orden. Okay. Can we recently just say if we are
spending 5 bucks, this is an arbitrary number, and I must admit
I cannot really do math, so we are going to say if we
arbitrarily spend $5 providing care that we are really saving
50 bucks at the end because having a veteran having to go into
inpatient care or to a veterans home or whatever is
exponentially more expensive than having him stay at their
home. There is significantly less dignity. As Mr. Rosendale
noted, 88 percent of folks want to do this, right?
Here is my question. You have got compensation up to $3,500
for PCAFC, right?
Dr. Richardson. Yes, sir.
Mr. Van Orden. All right. That is $42,000 a year. The
median income in the State of Wisconsin is $33,179. That is a
solid job. Could we potentially look at saying, hey, let us
look at the median income per State, and I know it is going to
vary, I get it.
Then tie the compensation for these caregivers and the
caregivers of the caregiver to the median income of the State
that they live in so that they feel like, one, they are valued
because they are, and two, they do not have to do this, you
know, taking the hit and all that stuff.
Again, we spend $5 up front we save $50 later. I just to
me, I mean, that is the advantage of being enlisted. I mean,
this just popped right out to me immediately.
One, we have got to advertise. I got to know that this is
available because, believe it or not, even though I am a
roguishly handsome young man I am getting older.
You know, these programs, my wife takes care of me right
now. You know, she is a nurse and she stays at home. I want my
wife to know about this. I wanted you to know about it. Take
care of your husband. God bless you for that and thanks for
your service in Fallujah, ma'am. Taking care of the Marines,
Semper Fi.
Dr. Richardson. Semper Fi.
Mr. Van Orden. I want people to know about this so they use
it, and I want my fiscal hawk buddies to understand that by
spending 5 bucks up front we are saving 50 bucks on the back
side.
If you can, I would love for you to come to La Crosse,
Wisconsin and I would love--I will host you there. I will give
you cheese curds. I will do the everything. I am serious.
Dr. Richardson. Yes, sir.
Mr. Van Orden. Let us do a clinic----
Dr. Richardson. Okay.
Mr. Van Orden.--with signs saying, hey, if you are taking
care of somebody you should be compensated so they feel
comfortable doing it.
Dr. Richardson. Yes, sir.
Mr. Van Orden. I will do that with you. That is a real
offer, okay?
Dr. Richardson. Yes, sir.
Mr. Van Orden. I hope you take me up on it. God bless you
for your work and you, too, ma'am. Ms. Duke is so happy right
now. She is, like, yes. You have seen some of my hearings
before. She is, like, yes. He did not talk to me.
Okay. Well, all right.
Sir, with that I yield back.
Dr. Richardson. Thank you.
The Chairman. It was so entertaining though.
Representative Budzinski, you are recognized for 5 minutes.
Ms. Budzinski. Thank you, Mr. Chairman and Ranking Member.
I want to thank the panelists for being here today and I
too just want to say thank you to the veterans that are here
and their caregivers that took time out of their schedules to
be here for this hearing and the Elizabeth Dole Foundation for
also being here. It is great to have you.
I wanted to ask Dr. Richardson a few questions specific to
the RAND report as it relates to rural access. I know Chairman
Bost talked about that. He and I are actually from similar
parts of the world and also behavioral health.
Dr. Richardson, one of the findings in the RAND report
highlights that rural veteran caregivers face significant
challenges in accessing certain services due to the lack of
broadband in their areas.
In fact, the report notes that about a quarter of
caregivers in rural areas did not have reliable broadband
Internet access in their home. What specific steps is the VA
taking to expand telehealth and in-person support services for
rural caregivers, particularly for those who may lack that
reliable access to Internet?
Dr. Richardson. Yes, ma'am, thank you for the question.
They have something available to them called the Digital
Divide. It is a consult in which we can provide those services,
that device to them.
Unfortunately, not as many people take advantage of that. I
think that is something that we need to communicate better and
get out to them so that they know that it is available to them.
We also find that because of post-COVID that we still do
not have a lot of in-person offerings. That is something that
we are pushing this year, that everybody will have in-person
services available to them at their local VA medical facility.
I think the other thing that you run into with rural areas
is it is a commute sometimes. They have a long commute
sometimes to get in-person services.
If we can get them connected to that Digital Divide, we can
get them connected with those services because Caregiver
Support Program offers both virtual and in-person and so it can
be any service that they need.
It could be 24, you know, we have programs that are
available to them at whatever time works best for them because
caregiving is not 8 to 4:30.
Ms. Budzinski. Right.
Dr. Richardson. We just need to do a better job from that
digital divide perspective, I think, to get that information
available to them and let them know what is available locally
and when and make sure that we are meeting their schedules as
it comes available to them.
Ms. Budzinski. That, kind of, leads into my next question
and a little bit of what Congressman Van Orden was talking
about is this awareness----
Dr. Richardson. Yes, ma'am.
Ms. Budzinski [continuing]. of this program and in rural
communities in particular they really struggle with getting
access to that information to be aware of these support
services. Is the VA looking at anything, you know, uniquely to
help, kind of, bring more awareness into rural communities of
the support systems you are providing?
Dr. Richardson. Yes, ma'am. That is a great question. I
think we have partnered with all the local medical facilities.
In every month of November is National Family Caregivers Month
and we require as part of a best practice or what we call the
One Plan, is that everybody offers something in-person.
I always think there are opportunities to communicate
better. I mean, I have been with VA, get my healthcare at VA
now for 14 last years and I am still learning so many things
that VA has to offer.
I think it is just continued communication. We have VA.gov
delivery. We have, I think, over a couple hundred thousand
people that subscribe to our gov delivery. We continue to send
out those emails.
Sometimes that works for our younger caregivers. It does
not always work for older caregivers.
Ms. Budzinski. Right.
Dr. Richardson. We have to think about the various needs
that they have across the country, too.
Ms. Budzinski. Okay, thank you.
Dr. Richardson. Yes, ma'am.
Ms. Budzinski. I have another question and this is more on
behavioral health. The RAND report indicated high rates of
stress and burnout among veteran caregivers with many
experiencing anxiety and depression.
Could you speak to what specific mental health support
programs is the VA implementing to address the unique needs of
veteran caregivers?
Dr. Richardson. Yes, ma'am. As I mentioned earlier, we have
a virtual psychotherapy program available to our caregivers
that are enrolled in PCAFC at all 18 VISNs across the country.
As a clinical psychologist for almost 20 years now and
having spent time with the Marines that, you know, you have to
think very differently about how we do care. I think one of the
things that we have realized is this does not exist anywhere
else in the country to my awareness, that we specialize in
mental health treatment for caregivers.
We are looking at a few different things. We are looking at
how to improve their quality of life. We are looking at how to
lower rates of depression and anxiety.
We just trained our providers last week in ACT for
depression so we are trying to do evidence-based psychotherapy,
train those 54 providers that we hired across the country to
provide those services to ensure that they are meeting the
needs of what we are seeing across the country, one.
Two, the other thing is we have to measure it. I need to
know where they started baseline and where they are going to be
when we are done with that psychotherapy because I think mental
health is a continuous journey. You do not have it 1 day and
not have it the next and 3 years later you are fine. It, kind
of, varies across that continuum.
We want to make sure that we are looking start to finish is
what we are doing effective and does it work?
Ms. Budzinski. Great, thank you. Just in real quick in
closing, I just wanted to mention an important piece of
legislation that is relevant here that I introduced this
morning alongside Congresswoman Brownley, the Improving
Veterans' Experience Act.
It is a simple yet important bill that would codify the
veterans experience office at the VA which supports and enables
VA to gather feedback directly from veterans, their families,
and caregivers on how to enhance VA services.
We were excited to do that this morning. Great to have you
here.
I yield back.
Dr. Richardson. Thank you, ma'am.
The Chairman. Representative Self, you are recognized for 5
minutes.
Mr. Self. Thank you, Mr. Chairman.
Dr. Richardson, you have pointed something out that I think
is across the VA. Many of the veterans simply do not know the
myriad of programs that are available to them. The education I
think in the VA has got to improve in every area.
Ms. Duke, I have got in front of me the, let us turn to the
$12 billion. I have in front of me the $1.7 billion, about 14
percent of your $12 billion, are in something called non-pay.
Okay?
I have got that break out in front of me. It is an
interesting category. Of the $1.7 billion you have got almost
$2 billion are in other contractual services and almost a
billion dollars in other supplies and materials and equipment
go down.
We have mentioned the PACT Act, so this is kind of curious
to me because how does the equipment, let us just start there,
how does the equipment go down where we know more veterans are
coming because of the PACT Act?
Ms. Duke. Thank you for the question, sir. I would say that
this is, first of all, this is a representative calculation for
the purposes of generating our estimate. We, as always, leave
our field directors in charge if they need to make an equipment
purchase and let a contract lapse. They have that capacity to
make those decisions in the medical center based on the----
Mr. Self. Okay. That is the decisions, but how in the world
does VA writ large, you, say that you are going to buy less
equipment? Let us leave that one and go to the other
contractual services, $2 billion dollars increase?
Now, by the way, you said that about 16 percent is going to
be through community care. Did I hear that correct?
Ms. Duke. Yes, sir.
Mr. Self. I thought that was low because I thought I had
seen a figure far larger than that, but we will take your
growth there in community services. What are these other
contractual services? I will get to my point after this.
Ms. Duke. There is a variety. This could include clinical
services where we are using contract staff to supplement
Federal employees. This could be bringing in folks to assist
with the work that needs to be done in the medical center.
It really is, kind of, a catch-all. We can get you some
more breakout if that is helpful?
Mr. Self. Yes. I would love to see it because I think this
could be a slush fund, let us just be honest, non-pay 14
percent of your $12 billion. I want to know what you are
spending that on because other contractual services does not
give me much clarity.
The rest of the categories here, transportation, rent and
utilities, other supplies and materials, equipment, grants,
insurance, those are things that I can get ahold of. Other
contractual services sound to me like you are contracting
things out and I want to know what those are.
Let us go to your prosthetics. Almost half a billion
dollars is in the prosthetics area. Now, before we even go
there you have already hired 5,000 new employees. No, you have
hired 17,000 employees off the top of my head, 17,000. You have
not told us what those 17,000 employees are.
You have told us about the 5,000 that you are going to
hire. When are you going to tell us about the 17,000 that you
have already hired?
Ms. Duke. We can get you information regarding the breakout
of our Full-Time Equivalent (FTE) onboard.
Mr. Self. Seventeen thousand that you have already hired
that we do not know what they, who they are and what they are
doing, I think, is 17,000 employees is a lot of employees that
we do not know about as the committee.
Now, let us go to the almost half a billion dollars in
prosthetics. First of all, you are utilizing emerging
technologies and you may have to send these to me, okay,
because I am about out of time.
I want to know about the emerging technologies that are
costing so much more. I want to know the growth in veterans
because as we wind down, why are more veterans accessing
prosthetics?
Where do you get your general inflation number? Then you
mentioned, I think in your testimony, ongoing procurement
challenges. That is something we might be able to help you
with. I want to know what your procurement challenges are
specifically.
If you will take those four questions, the emerging
technologies, the number of veterans, where do you get your
inflation numbers, and the procurement challenges. We will send
this to you as (inaudible 1:27:38).
Thank you so much.
Mr. Chairman, I yield back.
The Chairman. Representative Cherfilus-McCormick, you are
recognized for 5 minutes.
Ms. Cherfilus-McCormick. Thank you, Mr. Chairman.
Thank you so much to our caregivers for being here and all
the hard work that you do. I am actually very happy to be
having this hearing today where we can spotlight our
caregivers.
Sometimes I feel like our caregivers are the strength
behind our veterans who have served and we do not do enough to
actually make sure that our caregivers are taken care of.
My father-in-law he passed in 2018 and it was a tough
moment for us to take turns trying to figure out how to serve
him from my other sister-in-law and my brothers. We all tried
to fill that gap, so I cannot imagine being a sole provider or
having to bear it every single day. I thank you so much for
being here.
I also want to start off by asking one first question about
the caregiver stipends. Do they earn Social Security credits,
Dr. Richardson?
Dr. Richardson. Good morning, ma'am. No they do not.
Ms. Cherfilus-McCormick. Then I also wanted to highlight
two of our guests who are sitting in the audience. I want to
use this time to share two stories of caregivers. Sitting in
the audience today Stacey Hawley and Ashley Lee. I commend them
for both of their tireless advocacy and for their being here
today.
Stacey is an Elizabeth Dole Foundation fellow, legal
professional, caregiver, and mother to Army Sergeant Nathaniel
Heath-Price. I do not know how you do all of that. Nathaniel is
a member of the 82d Airborne Division who was deployed to
Afghanistan.
After a Traumatic Brain Injury (TBI) left Heath-Price
wheelchair-bound, Stacey had to balance her full-time job as a
paralegal with the onerous demands of being a caregiver to her
son. Like so many caregivers, Stacey experienced heavy
financial strain.
She exhausted her retirement savings and even began to sell
her own blood just to make ends meet. In the face of all these
obstacles, Stacey was never deterred. Rather, she continued to
persevere utilizing support services like the VA respite care
program, as well as the VSOs like the Semper Fi Fund and the
Wounded Warrior Project.
Thanks to the Elizabeth Dole Foundation, Stacey was
informed of the Pillars of Strength Scholarship which covers
full tuition and fees for caregivers to injured veterans. She
was accepted and now can complete her Bachelor's degree, a
long-time dream of hers.
Next, I would like to look at and talk about Ashley Lee,
who was raised by her single father, Darrell, a Vietnam veteran
living with Amyotrophic Lateral Sclerosis (ALS). Ashley became
the sole care provider for her father after losing her husband
in a tragic motorcycle accident.
Ashley ended up having to quit her job to care for her
father around the clock. Sadly, his condition continued to
deteriorate eventually requiring him to be placed on a
ventilator. Due to the frequency in which Ashley's father was
admitted to the hospital, she relied on housing provided by a
nonprofit organization to be close to her father, often for 3
months at a time.
Despite these immense challenges, Ashley has not wavered.
She continued to pursue her Ph.D. in psychology with an
emphasis on research for our veterans with spinal cord
injuries. Ashley hopes to 1 day work for the VA healthcare
systems and Stacey and Ashley represent the best of us.
I cannot thank them enough for being here today and for
sharing their deeply personal and likely traumatic stories with
lawmakers like myself. Thank you so much for your service and
the other members also.
We must never forget the immense contribution caregivers
like Stacey and Ashley make to our communities across the
country.
Dr. Richardson, I have one more question for you in the
small amount of time I have left.
The Programs of Comprehensive Assistance for Family
Caregivers is a vital lifeline to so many caregivers across the
country. The program provides eligible caregivers with a
monthly stipend to help make up for lost wages, as well as
respite care.
When caregivers need a much-deserved break, even the
important role this program plays for so many families, I am
concerned that the VA is continuing to drag its feet on
publishing new regulations to refine the eligibility criteria
for program participants.
Since pausing this discharge of legacy participants under
the current criteria in 2022, VA has yet to propose new
regulations leaving many families in limbo.
Dr. Richardson, why did the VA feel it was necessary to
update the eligibility criteria back in 2020?
Dr. Richardson. Yes, ma'am, thank you. When the program,
when the MISSION Act of 2018 expanded the Program of
Comprehensive Assistance to veterans of all service eras, at
that time, the program, VHA took a step back to look at the
program as a whole. That is how those October 1, 2020
regulations came to be.
Today, we realize that we can do better. VA has taken a
step back these last 2 years and looked and relooked at the
eligibility criteria and have submitted a proposed rule to the
Office of Management and Budget this year.
Ms. Cherfilus-McCormick. Since my time is running out, if
you could provide this answer later on, how can the committee
work with VA to ensure that these regulations are expedited and
that the veterans and their caregivers are aware of the new
eligibility criteria for the PCAFC.
Thank you and I yield back.
The Chairman. Representative Ciscomani, you are recognized
for 5 minutes.
Mr. Ciscomani. Thank you, Chairman.
Thank you all for coming to testify today. I appreciate
that supporting caregivers and ensuring VA programs function
efficiently is something I am proud to have a role here in
Congress. I have introduced and co-led legislation with the
comprehensive purpose. Also, for example, the Care Act, and as
well as the Veterans Caregiver Reeducation, Reemployment, and
Retirement Act, which all aim to enhance the caregiver
experience while bolstering programs already in place.
Now, this has been talked about a bit during this hearing.
I want to do a little more emphasis on the rural side of
things.
Dr. Richardson, caregivers have shared that even when they
are approved for respite care, which gives caregivers,
obviously, the opportunity to take a break from caregiving
responsibilities, VA has been unable to provide basic care
services in their place. That has been mentioned here already.
This is especially concerning for the rural parts of my
district. What is the VA doing to address the significant issue
and ensure eligible caregivers can actually receive the
services they are entitled to and veterans that they care they
are entitled to as well?
Dr. Richardson. Yes, sir. Thank you for the question. Two
things, one, we have hired those respite champions across the
country. They are trained at all 18 VISNs. They now have
expertise in respite sources, respite funding.
Because respite has been different across the country to
every VA, we wanted to have experts at every VA medical
facility that could understand what are the respite resources
available to them regardless of where they live? That was the
first thing that we did.
That has been implemented. That is now in place. We should
have respite SMEs, subject matter experts, at every VA medical
facility across the country.
The second thing that we are doing is piloting this VDC
pilot and so we have 11 sites onboard. Several of them are in
rural areas from Chillicothe to Anchorage, Alaska, Togus,
Maine. I think we have six of those sites in rural areas so
that we can really focus on offering respite to those veterans
duly enrolled in VDC and PCAFC who have high, acute needs.
Mr. Ciscomani. I thank you for that. I want to just
emphasize the importance of it. I am looking forward to seeing
what the impact is from the approach that you are taking now.
The anecdotal evidence I hear at home is that they are not
getting what they need and especially at the rate that they
need it. I am curious to know also when do you think you can
expect some, kind of, measurement on how successful the efforts
are being done?
Dr. Richardson. Yes, sir, thank you. I hope by the end of
this year after we pilot these 11 sites. I do not anticipate
that it will not be successful.
This is an opportunity for veterans to bring into their
home who they want to care for them, so I cannot imagine that
it would not be successful, sir.
Mr. Ciscomani. Well, I look forward to receiving that
information or report or whatever it is that you compile to
show progress in this area. I would appreciate that.
Dr. Richardson. Yes, sir.
Mr. Ciscomani. Dr. Richardson, back to you as well, when
someone lovingly devotes all their time to a spouse or a family
member in need of long-term care, we just heard from my
colleague an example of that, they likely do not have the time
to work and earn an income themselves.
Being out of the workforce for long periods of time can
heavily impact someone's ability to get back into the
workforce. Does the program for, the one you just mentioned,
the Program of Comprehensive Assistance for Family Caregivers,
include any kind of support for reintegrating these individuals
back into the workforce?
Dr. Richardson. Thank you for the question, sir. Today no
it does not.
Mr. Ciscomani. We need to do something about that. You
know, would including programs like this to assist with
workforce reintegration be possible within the program or would
a new program be necessary for that?
Dr. Richardson. Thank you for the question. I think it is a
matter of partnerships across VHA depending on--we know
caregivers have very unique skills that most people do not have
because of what they have done for their particular veteran.
They have a lot of skilled skills, if you will, from bowel, you
know, Peripherally Inserted Central Catheter (PICC) lines,
bowel and bladder, those kinds of things.
I think it could be a matter of seeing what we can do to
integrate their skills into something meaningful just as we do
with, you know, men and women who discharge from the military
that have a particular background in medicine or a particular
background in, you know, corpsmen, medics, et cetera. I think
there is an opportunity there to do something great with that.
Mr. Ciscomani. Well, I do not want to put words in your
mouth, but I am sensing that you think it is a good idea. It is
a good opportunity. We have these caregivers that took care of
veterans that they developed these skills that could be very
valuable into the workforce as well.
I think we have an opportunity here that we can work
together on to either, again, find out and if you could report
back to me on this as well and the committee, if it is more
possible to add this program to existing programs or we need to
venture out into something else?
I am very interested in that. The more people that are out
in the workforce the better it is for everyone. Getting a
paycheck is not only good for the family and the economy but
for the soul as well once they are back in there. We need to
make sure that we support them in that after, especially what
they have gone through with the support they provided.
If I could partner with you on that and have your
commitment to get something to us back here shortly, I would
appreciate that.
Dr. Richardson. Yes, sir.
Mr. Ciscomani. Thank you.
With that, Chairman, I yield back.
The Chairman. Mr. McGarvey, you are recognized for 5
minutes.
Mr. McGarvey. Thank you, Mr. Chairman.
Dr. Richardson, I want to thank you and your team for
serving the more than 80,000 veteran caregivers participating
in your programs. While many of the resources for caregivers
are designed to be helpful, caregivers do find some of these
services difficult to navigate, coordinate, and, ultimately,
find them inaccessible.
In RAND's recently published caregivers report they found
that military and veteran caregivers who are caring for
veterans younger than 60 are at higher risk for depression.
They are also less likely to seek care than their non-
caregivers. Nearly half of caregivers report that they have no
backup care and no one to turn to if they need support.
Even with the respite champions initiative and empowering
programs like Veteran-Directed Care, utilization of needed in-
home support services remains low. The VA can do better if it
embraces customer experience and innovation.
Take, for example, the Office of Geriatrics and Extended
Care at VHA's innovation team who are running the tech-enabled
respite home care pilot that empowers aging veterans and
caregivers to choose their own, they get to choose their own
trained home care professionals, even their neighbor through a
technology-enabled co-employer model.
The caregiver could take a break and they can choose
someone they know who has their back. Preliminary findings are
promising.
60 percent of veterans participating in the pilot selected
people from their existing communities to be employed, trained,
bonded, and insured by the co-employer to provide home care
support at a wage that was 50 percent higher than those offered
by traditional home care agencies. Let me repeat that, 50
percent higher wages.
Because there was less overhead cost for the employer, the
cost to the VA was significantly lower than traditional home
aid and respite services. You have got comfort, you have got
higher wages, you have got lower cost to the VA.
I think this pilot demonstrated a significantly improved
customer experience and increased rates of utilization for
these services, all with an overall lower price tag to the VA.
Better experience, lower price, higher wages.
Dr. Richardson, what plan does the VA have to roll out the
tech-enabled respite home care pilot to other pilot sites or to
scale-up VA-wide?
Dr. Richardson. Thank you for the question. I am happy to
take that back to our GEC partners. I certainly do not want to
step on their toes and commit them to something I am unsure of.
What I can say is it is an excellent program. We agree,
which is why we are piloting our VDC respite pilot for those
dually enrolled in VDC and PCAFC.
I think you are right. I think veterans want people they
know and care about to come into their home to take care of
them. We want to be able to do that for them as well.
Mr. McGarvey. Thank you for that. Whatever you find out,
you know, let us know----
Dr. Richardson. Yes, sir.
Mr. McGarvey [continuing]. because it is I think with this
committee you see there is a lot of bipartisanship here because
what we are doing is coming together and trying to find the
best way to take care of the men and women who were willing to
put on a uniform and sacrifice everything for us.
If we have got something like this, again, higher wages,
lower costs, better customer experience, we want to see that
for our veterans.
Another question is how will your team prioritize patient
experience and innovation moving forward? How are you guys
collecting feedback on some of the patient experiences?
Dr. Richardson. Yes, thank you for the question. Several
ways, and we have been doing this since I came onboard 3 and a
half years ago.
First thing is as a leader you think you know what you know
but you really do not until you get down into the work of who
actually does the real work around here. That is our staff at
the local medical facilities and that is the caregiver who are
on the receiving end of these services.
I do listening sessions across the country every single
month with literally everybody, from my teams at every VA
medical facility, either virtual or in-person, and with
caregivers across the country when I go to those sites.
We have to look at that information, one. Two, we do a
VSignal survey. It is 2 years this September that we rolled
that out across the country.
What we do is we have these opportunities for customer, I
forget what we call it, but basically if we see something that
was not favorable, they did not have a good experience, we pick
up the phone and we call that caregiver and say what can we do
better to earn your trust? What can we do better to improve
your experience in our program?
Mr. McGarvey. That is wonderful. Thank you so much, Dr.
Richardson.
Mr. Chairman, I yield back.
The Chairman. Representative Kiggans, you are recognized.
Ms. Kiggans. Thank you, Mr. Chair.
Dr. Richardson, prior to serving in Congress I was a
geriatric nurse practitioner and I am always looking for
opportunities to support just other people who want to take
care of and serve our veterans and our greatest generation.
How is the medical personnel shortage affecting caregiver
training and support programs? Are there any plans for
expanding something like scholarship programs or financial
incentives or training for people like Certified Nursing
Assistant (CNA), Licensed Practical Nurse (LPN), or geriatric-
focused nurses at the VA?
Dr. Richardson. Yes, ma'am, thank you for the question.
Caregiver Support is primarily comprised of social workers and
psychologists. We do have a few physicians that sit in and
nurse practitioners, occupational therapists, RNs, et cetera at
the Centralized Eligibility and Appeals Teams at the VISNs that
render those decisions for the Program of Comprehensive
Assistance.
To my knowledge, today through CSP we do not offer those,
but I know VHA as a whole does offer those incentives and
scholarships for those. I forget what they are called, ma'am,
but happy to take that back and get that specific information
for you.
Ms. Kiggans. Good, just finding ways to just incentivize
people to go into that line of work. I think it is a very
special, just special form of healthcare.
Then on that same note, I remember in my primary care
practice, and I represent Virginia's Second District, so large
veteran population, one of our challenges was just
communicating to our veteran families what resources were
available to them.
I remember even things like the VA would build ramps or
supply adult diapers or nutrition, you know, and respite care
in a lot of situations, but even as a veteran, as a healthcare
provider it was hard for me to know what was available to our
veteran families.
We would work with a really great and involved office
manager a lot of times to liaison with the VA and find out, you
know, what that specific veteran family was eligible for.
How can we do a better job at not only communicating with
the families and caregivers but communicating with providers,
specifically primary care providers, who touch a lot of that
patient population as well?
Dr. Richardson. Yes, ma'am, thank you for the question. You
are right. There are a lot of opportunities. As a veteran
myself who has been with VA now for almost 18 years, I struggle
to navigate the system because there are so many things
available and we do not always know what is out there for us. I
think there is an opportunity to collaborate with primary care
to enhance that.
I think one of the things I truly enjoy about our program
is we do something called in-house wellness contacts and it is
our opportunity once a year to go into the veteran and
caregiver's home to have contact with them.
I have seen time and time again how our social workers and
staff have identified needs for veterans that they did not know
was available to them. To your point, shower chairs, chairs
that lift them in and out of the seats that they sit in because
they are unable to get in and out or transfer easily.
I think, you know, that is something that I have seen
historically now in the last 3 and a half years, but I always
think that there is an opportunity to do better on the
communication piece to let veterans and caregivers know what
resources are available.
Ms. Kiggans. Yes. That is a good idea. There is nothing
like going into someone's home and seeing specifically what
their needs are and doing----
Dr. Richardson. Yes, ma'am.
Ms. Kiggans [continuing]. a little bit of home health. It
is a whole different world and I think you can learn a lot more
by just working with the civilian side of the house, too,
because a lot of our veterans do still receive civilian primary
care.
I mean, we had lots of drug reps come visit and different
people communicating, you know, what is new on the medicinal
front, but that maybe incorporating that, too, into visits,
just visits to primary care practices that are civilian just to
educate providers.
I think that would be certainly useful in a district like
mine with a large veteran population. Let us see. According to
the Census Bureau, 49 percent of living veterans are 65 and
older and 25 percent are between the ages of 70 and 79 years
old.
What strains are you seeing on the existing caregiver
support system as these veterans and their families register
for VA caregiver programs?
Dr. Richardson. I think we see a couple different things
that depending on the service era of that particular veteran. I
think when you start looking at your younger group of veterans
you start to see a lot of strain because the caregivers are not
just managing or taking care of a veteran.
They are raising children. They are trying to work. They
are trying to manage a household and kids sports and all those
different types of things.
I think when you start looking at your potentially pre-1975
population of veterans, your World War II veterans, your Korean
veterans, and your Vietnam veterans, you are seeing different
strains on the family where the caregiver in and of him or
herself is not always capable of providing those personal care
needs that that particular veteran needs.
Now the daughter or the son-in-law or a family friend is
coming in to step into the picture. Then they know even less
about VA than maybe a spouse does at that time. Those are the
challenges that I see in the program today.
Ms. Kiggans. I would agree with that. We certainly know it
is a sandwich generation a lot of times taking care of our
older adults and their younger families. It is a job that is
thankless, and we need to be finding ways to incentivize our
caregivers that we use to the best patient outcomes. We had
especially family that could be very involved.
It is not possible for every family, but as much as we can
be helpful in incentivizing that and making their lives easier,
providing the benefits they are entitled to, we are happy to
help, I know, from this committee. Thank you for all you do.
I yield back, Mr. Chair.
The Chairman. Representative Kennedy, you are recognized
for 5 minutes.
Mr. Kennedy. Thank you, Chairman.
Dr. Richardson, thank you for your testimony and your
leadership.
Ms. Duke, thank you for your testimony and leadership as
well and for your service to our country and to all the
veterans that have joined us here today and those watching for
their service to our country as well.
I am, too, like my colleague, a healthcare practitioner. I
am an occupational therapist. I am happy to hear you just
mention occupational therapy is under your purview. I am the
son of a nurse, a grandson of a nurse, and the son of a father
who received lifesaving medical treatment at the VA hospital in
Buffalo when I was a young boy in the early 1980's.
Obviously, it is very personal for me and my family as it
is personal for all families across our country, the work that
you are doing. That is why it is so important your testimony
here today and how we can work to get it right.
I want to go back to what one of my colleagues brought up
in the $12 billion fund for new hiring. My colleague mentioned
new hires, and I think, Ms. Duke, this is for you.
My colleague brought up new hires coming in at 5,000,
potentially 17,000. But question I have because of the data
that I have seen is that there is actually a decrease in
employees across the system since the PACT Act was put in
place. Is that accurate? Has there been a net increase or
decrease in employment across the board at the VA?
Ms. Duke. The short answer is there has been an increase
when we expected it to be a decrease and that is why we are
communicating the need for additional resources. We had
expected coming into 2024, because we have been so successful
hiring up last year, that we would be able to keep FTE coming
down and still continue to provide the same quality of care.
What we have seen from our front lines is that that was not
feasible. Because we have never had a hiring freeze, we now see
our staffing going up. The 5,000 is what we are anticipating
net across the system growing in 2025 which, again, is just to
enable our field to continue to bring on what is necessary.
Mr. Kennedy. What I am asking is not forward-looking but to
this point. Since the PACT Act was passed has there been an
increase or decrease in employment across the system?
Ms. Duke. Increase.
Mr. Kennedy. There has been an increase. Those 5,000 new
hires you mentioned have already been hired, or 17,000 have
already been hired?
Ms. Duke. They have not but we were able to grow in
response to the emergent needs that we were seeing.
Mr. Kennedy. The issue is that you cannot pay them with the
amount of appropriation that has been given to you thus far?
There is a $12 billion hole. Is that accurate?
Ms. Duke. $12 billion in 2025.
Mr. Kennedy. Yes.
Ms. Duke. That includes resources that we are spending in
2024 that we did not think we would need to.
Mr. Kennedy. Right. An increase in need from veterans that,
thankfully, with the leadership of the community and the
Congress and the president, has enacted the PACT Act to broaden
healthcare services for our military heroes.
The funding is not there so it is unsustainable at this
point. You need that $12 billion.
Ms. Duke. That is our estimate as of this time.
Mr. Kennedy. Well, I would argue that Buffalo, New York,
that VA hospital that helped saved my father's life 4 years
ago, is a shining example of the need for more resources.
Nurses just recently were out on the picket line calling
for more resources. They are saying that there is what amounts
to a hiring freeze, even though you just said there is not a
hiring freeze, because it takes 9 months to onboard an
individual because the funding is not there.
I just want to make the point, and maybe you can elaborate
on it, that, you know, the promise of America to our veterans
if you don the uniform, is not being kept if the funds are not
being put in place in order to provide for the care that they
are depending on.
Ms. Duke. I would say that the reason we came forward with
the shortfall was because we did not want to be in a situation
where we did not have adequate resources to continue to meet
that promise to our veterans across our system.
Mr. Kennedy. Well, we have work to do. Thank you.
The Chairman. The gentleman yields back?
Well, thank you, Dr. Richardson.
Thank you, Ms. Duke, for testifying today. I know it was,
kind of, long but you are excused. We appreciate you being
here.
Once again, Dr. Richardson, Semper Fi.
Then our second panel of witnesses can approach the table
and take their seats whenever they are available.
All right. On our second panel we have Dr. Rajeev Ramchand,
a senior behavioral scientist and coordinator of RAND Epstein
Family Veterans Research Institute. I got all that out right.
We also have Mr. Steve Schwab, the Chief Executive Officer
(CEO) of the Elizabeth Dole Foundation. We have Ms. Vanessa
Chism, an Elizabeth Dole caregiver fellow, and Mr. Troy
Broussard, State director of the AARP, and Mr. Jonathan Pruden,
special advisor to the chief of staff for Warrior Care at the
Wounded Warrior Project.
Now, I now recognize Dr. Ramchand for 5 minutes to deliver
your testimony.
STATEMENT OF RAJEEV RAMCHAND
Dr. Ramchand. Chairman Bost, Ranking Member Takano, and
members of the committee, thank you for inviting me to testify.
My name is Dr. Rajeev Ramchand and I co-direct the RAND Epstein
Family Veterans Policy Research Institute at RAND, a nonprofit,
nonpartisan research organization.
Yesterday RAND released, ``America's Military and Veteran
Caregivers, Hidden Heroes Emerging From the Shadows.'' I had
the honor of leading this study.
The study estimates that there are 14.3 million military
and veteran caregivers. This estimate surpasses past estimates
of military and veteran caregiving in the United States.
Many people caring for those in need of support do not
identify as caregivers, but previous research has largely
relied on a person identifying as a caregiver in order to be
counted as one.
Our updated approach relies on people describing the
caregiving tasks they perform. We are including caregivers may
not identify as such. This may include spouses caring for aging
parents, individuals caring for their friends with mental
health conditions or substance use disorders, or non-family
members who may take on caregiving roles for their friends and
neighbors.
Many military and veteran caregivers see value in
caregiving.
As a caregiver taking care of a veteran friend told us, you
feel like you are doing humanitarian work. You learn from their
personal experiences, from their life, but there are costs to
caregiving as well.
In my testimony today I am going to describe highlights
from our research that demonstrate the diversity of military
and veteran caregivers and those they are caring for, as well
as the implication this diversity has for policy.
I am also going to quantify the emotional and financial
costs of caregiving and provide policy options to address these
issues.
Military and veteran caregivers are not a monolith. One
important distinction we found was that 26 percent of these
caregivers are caring for servicemembers and veterans aged 60
and under, and these caregivers and their experiences are very
different from those who care for someone over age 60.
Those caring for younger veterans and servicemembers are
most often spouses, neighbors and friends, or family members,
such as siblings or aunts and uncles.
In contrast, the largest group caring for older veterans
are adults caring for their parents, though spouses and friends
each account for a significant proportion as well.
Many military and veteran caregivers are caring for
individuals with cognitive, mental health, and substance use
diagnoses. Between 40 and 60 percent of military and veteran
caregivers reported that their caregiving entails helping the
veteran cope with stressful situations, manage sudden changes
in mood, or avoid triggers of anxiety or antisocial behavior.
These tasks only scratch the surface of what these
caregivers do to help servicemembers and veterans struggling
with emotional and behavioral issues, including thoughts of
suicide. The problem is that many policies and programs
overlook military and veteran caregivers to those with mental
health and substance use conditions.
Eligibility requirements are often based on Activities of
Daily Living (ADL), such as helping a person bathe or
Instrumental Activities of Daily Living (IADL), such as grocery
shopping or housework.
These may be inadequate for describing what many military
and veteran caregivers do. This has implications for policy.
First, we must ensure that policies and programs directed
to support military and veteran caregivers, including those run
by the VA, support those carrying for individuals with mental
health and substance use diagnoses.
Second, we must promote programs to caregivers in ways that
do not require them to identify as caregivers in order to
partake in them. Caregiving takes an emotional toll. 43 percent
of military and veteran caregivers to those aged 60 or under
meet criteria for depression, nearly four times that as non-
caregivers.
Among the top barriers they report for not receiving mental
healthcare were not having time for such care and being worried
about the side effects of medications or being hospitalized if
they were to admit certain things, such as past suicidal
thoughts.
Our report makes strong recommendations to increase mental
health care to caregivers and their families. As you have
heard, VA is piloting a novel approach, but those who are doing
it are a small subset of caregivers who qualify and are
eligible for the PCAFC.
There is more needed, especially outside of VA. Expanding
telehealth may increase access to mental healthcare for more
people but its benefits will only be fully realized when
interstate licensure agreements are worked out.
Integrating mental health into primary care, like models
such as collaborative care, is also a critically important
step. If you compensated military and veteran caregivers for
all the hours of caregiving they perform, it would total well
over $100 billion. Most caregivers are not paid for their work.
There are different approaches to help address this
financial strain. We recommend that programs serving caregivers
expand outreach to help them identify existing sources of
support, such as Supplemental Nutritional Assistance Program
(SNAP) or Special Supplemental Nutrition Program for Women,
Infants, and Children (WIC) . We also recommend that Congress
seriously consider tax credit options for caregivers.
Research has shown that other tax credits, such as the
earned income tax credit or the expansion of the child tax
credit during the height of COVID, helped lift millions out of
poverty. A caregiver tax credit might result in similar results
as well.
Thank you for your time and I look forward to your
questions.
[The Prepared Statement Of Rajeev Ramchand Appears In The
Appendix]
The Chairman. Thank you, Doctor.
Mr. Schwab, you are now recognized for 5 minutes for your
opening statement.
STATEMENT OF STEVE SCHWAB
Mr. Schwab. Good morning and thank you, Chairman Bost,
Ranking Member Takano, and members of the committee for the
opportunity to testify today. My name is Steve Schwab, and I am
CEO of the Elizabeth Dole Foundation, a national nonprofit
whose mission is to strengthen and support military and veteran
caregivers.
Before I begin, I want to recognize the more than 60 Dole
caregiver fellows that we have in attendance today from all
across the country, as well as many more watching online. They
have taken precious time away from their caregiving duties to
be here and, simply put, their value to their loved ones and
the VA and this Nation cannot be overstated.
I would also like to thank and recognize former Secretary
Bob McDonald for being here today and for coming onboard as the
foundation's new board chairman. Yesterday, the foundation was
honored to welcome over 600 guests to our 9th annual convening,
launching the new RAND report just outlined by Dr. Ramchand in
his testimony.
This landmark research, thanks in part to our friends at
Wounded Warrior Project and AARP, reflects what we see every
single day at the foundation, as well as in the moving
testimony that you will hear soon from Vanessa Chism.
We could not be more proud of Vanessa and her family for
being willing to share her experience and theirs to help
others. I want to thank Vanessa, Cody, and the Chism family for
being here today.
While I offer a detailed outline of EDF's takeaways from
the RAND report in my written statement, I want to focus today
on two grave areas of concern for our community. First,
addressing the current Veterans Health Administration budget
shortfall.
While we appreciate that Congress acted quickly to address
the funding shortfall for the VBA, the challenge still remains
to fund VHA at appropriate levels to ensure veterans and their
caregivers receive needed and earned care and services.
While the VA Caregiver Support Program represents a
relatively small part of the VA, the impact of the shortfall in
this program offers a picture of the overall impact at the
agency level for veterans and their caregivers.
We will endanger veterans and caregivers by abolishing
frontline vacant positions, by instituting hiring freezes, or a
lack of clinical providers and social workers and budget cuts
to vital programs like respite that were just finally starting
to get traction, as we heard from Dr. Richardson.
In addition, prior to the identification and announcement
of this shortfall, multiple new programs impacting caregivers,
veterans, and survivors were on track for full implementation.
The Veteran Family Resource Coordination Program, the Survivor
Assistance and Memorial Affairs Program, and the lead social
workers at the VISN level were all delayed. These programs and
services are intended to connect caregivers and families with
resources before a crisis occurs and could promote cost
savings, as we have heard this morning in addition to the added
peace of mind for the caregiver.
Additionally, the foundation and every other major veteran
service organization strongly support the passage of H.R. 8371,
the Senator Elizabeth Dole 21st Century Veteran Healthcare and
Benefits Improvement Act.
As many of you know, this omnibus bill includes the
Elizabeth Dole Home Care Act, which has numerous provisions
directly impacting veterans and caregivers. Most notably, the
legislation would remove the 65 percent expenditure cap on VA
provided in the home and allow our most vulnerable veterans and
caregivers the support they need to stay with their loved ones.
We thank Congresswoman Julia Brownley for her leadership in
introducing and fighting for this legislation.
While the passage of this bill is a top priority, the
veterans omnibus package, to which Senator Dole also proudly
lent her name, includes numerous additional provisions
important to caregivers and veterans, excuse me, including
grants in the community to provide much needed mental
healthcare to veterans and their caregivers, a pathway to
advocacy, a long-awaited pilot program for assisted living
services, significant benefits for survivors, which has come up
repeatedly this morning, and finally enhanced access in the
community for those whom it has been determined for their
clinician is in their medical best interest. It enhances access
to rehabilitation for veterans in need.
I also want to remind this committee how vital it is that
we grandfather our 14,000 legacy caregivers into the PCAFC
program. This committee has championed landmark legislation,
such as the PACT Act and the Veterans Comprehensive Prevention,
Access to Care, and Treatment (COMPACT) Act, that significantly
increased the number of veterans receiving VA care, benefits,
and creating additional strain on the VA system.
We understand there needs to be a conversation about the
balance of community care and direct care. We want to
strengthen the VA and ensure staffing is sufficient for the
need, but until a plan is in place the access to care
provisions in the omnibus provide a lifeline to veterans in
need and the caregivers who advocate for them.
Many of the challenges outlined here and in the RAND report
can be addressed through continued oversight and legislative
initiatives, as I have outlined.
Specifically, the omnibus package would provide in many
cases immediate relief to those in need. We urge members of the
House to reach out to trusted veteran caregiver and survivor
advocacy organizations to hear their perspective on this
legislation and ensure its swift passage.
Veterans and caregivers have been waiting for 2 years for
Congress to take action on many of the provisions in this bill
and they simply cannot wait any longer for its lifesaving and
life-changing provisions.
Thank you, Mr. Chairman, and I look forward to your
questions.
[The Prepared Statement Of Steve Schwab Appears In The
Appendix]
The Chairman. Thank you, Mr. Schwab.
Ms. Chism, you are recognized for 5 minutes for your
opening testimony.
STATEMENT OF VANESSA CHISM
Ms. Chism. Chairman Bost, Ranking Member Takano, and
members of the committee, thank you for allowing me to speak
today. I am sharing my story today representing millions of
other caregivers who are experiencing similar struggles yet
they bravely tend to our Nation's heroes every single day.
My name is Vanessa Chism. I am the wife and caregiver for
my husband Cody. We were high school sweethearts marrying soon
after graduation.
In 2003, he decided to join the U.S. Army as a combat
medic. While at our third duty station he deployed to Iraq and
in December 2008 he came home. I naively thought he was
unscathed from the atrocities of war simply because he was
coming home without being medivacked out of the combat zone.
The moment I saw him, I knew I was wrong.
Ultimately, my husband was medically retired from Walter
Reed Army Medical Center in 2011 after spending almost 2 years
in the Warrior Transition Unit (WTU) there with a diagnosis
primarily of Post-Traumatic Stress Disorder (PTSD) with bipolar
disorder.
My husband was appropriately diagnosed in 2012. It was
determined that my husband's experiences in combat likely
caused PTSD, moderate TBIs, and seizures.
While suspected for many years, it was not until 2024 that
he was diagnosed with chronic traumatic encephalopathy by the
VA, causing continuous neurological decline.
It has taken me 15 years, collegiate education in
psychology and behavioral neuroscience, six VAs, and multiple
private physicians to even begin to understand his actual
diagnosis and the care and services available to him and our
entire family.
His daily life is afflicted with chronic suicidal
ideations, migraines, epileptic seizures, episodes of
psychosis, chronic pain, and cognitive impairment leaving him
unable to care for himself independently.
While he is still here physically, I have lost who my
husband once was. Our family endures the ever-changing
neurological decline resulting from traumatic brain injuries,
but we have learned to fight and learned to advocate and
prevail as a family.
There are programs within the VA established to assist
families like mine. However, accessibility is the problem. I
have been enrolled in the PCAFC program since 2012, currently a
legacy participant.
On November 5, 2021 despite VA assessors stating multiple
times that my husband is not capable of caring for himself, I
received notification that he was being discharged from the
program because he would not need continuous care for more than
6 months.
I am currently among the approximately 14,000 of their
legacy participants in the pause waiting for the VA to disclose
our fate, which leaves us all vulnerable and unsure of what the
future holds.
Enrollment in the PCAFC program provides eligibility for
respite care, yet I have not received and have never received
it. I requested respite care multiple times at multiple VA
facilities. While approved, there were no available providers.
I was successful in receiving respite care once. It was
through the Elizabeth Dole Foundation. The respite provider
drove and assisted my husband with obtaining medications from
the VA and then took him with his service dog to a dog park to
play.
The simple ability to not have to worry for just a few
hours is invaluable. Currently, my respite is provided by my
incredible children. They too have dedicated their lives to
being caregivers to their father.
Without apprehension they step in to help, whether that be
driving him to the store and making sure he remembers why he is
there, knowing what to do when he has a seizure, understanding
when plans have to be canceled, or monitoring their dad doing
simple daily tasks.
Both of my older children have had periods in their lives
where they needed therapy services to help them. Thankfully,
the Wounded Warrior Project helped me ensure all barriers were
removed so that they received care.
While I recognize the challenges of this life, I like to
focus on the positives. All three of my children are incredibly
kind, compassionate, flexible, and always dependable. These are
characteristics they not only present when they are at home but
throughout our community.
There are sacrifices made, but they have their dad at home
with them. That can never be replaced.
Veteran-directed care is another beneficial program.
However, I have found that staff at VA healthcare facilities
are not fully trained regarding the VDC program and it is often
only available in limited catchment areas.
I have had to inform social workers at VA facilities of the
VDC program and explain the process for eligibility. VDC could
only allow me to directly hire trusted individuals who are
familiar with Cody's needs and provide me with respite care.
Yet, I have been unsuccessful in accessing this program.
VDC could be an asset to me and other caregivers who need
and deserve a break so we can be at our best when caring for
our veterans.
Another beneficial yet challenging to access program is the
community care network. For example, when referred to a
community care podiatrist we found multiple hurdles attempting
to access care. The podiatrist provided exceptional care, yet
she was not permitted by the VA to provide something as simple
as a walking boot improve his mobility.
After waiting for months for the VA, I spent hours of my
time to discuss with the VA how to fix this problem. The delay
was a result of inaccurate paperwork. The unnecessary back and
forth was more costly for the VA and detrimental for Cody.
I became my husband's full-time caregiver at 26, and I am
now 41. Being my husband's caregiver is a choice I make and 15
years into this I am fully aware of the sacrifices I have made
and will continue to make.
With the appropriate support structures in place, I can be
a better caregiver for him every day. I am no longer naive. I
know that there may come a day where I can no longer care for
Cody in my home.
We should all be allowed to make the decision that is best
for our families with the full support of the VA. My husband
chose to defend our country without hesitation, unknowing the
consequences of war that would impact the rest of his life.
Despite any disabilities and accommodations, if he chooses,
my husband deserves to be involved as much as possible in our
lives. We cannot give him that choice without your help.
It is this country's responsibility to ensure we provide
our veterans with unwavering, easily obtainable support.
Because of my lived experiences and experiences of other
caregivers, I would like to make the following recommendation.
The immediate passage of H.R. 8371 because it addresses
many of ours and other families' challenges.
Grandfather all current PCAFC legacy participants. We have
proven we are eligible for this program.
Expansion of complex, post-acute neurological treatment
within VHA.
Provide easily obtainable case management or care
coordination services for veterans with complex medical needs.
Thank you all for the opportunity to share my story. I
share these personal details with you not looking for sympathy,
but to ensure significant, positive, impactful change,
lessening the load for veterans and their caregivers across
this Nation.
Thank you and I look forward to questions.
[The Prepared Statement Of Vanessa Chism Appears In The
Appendix]
The Chairman. Thank you, Ms. Chism.
Mr. Broussard, you are now recognized for 5 minutes.
STATEMENT OF TROY BROUSSARD
Mr. Broussard. That is right. Thank you. Chairman Bost,
Ranking Member Takano, and members of the committee, my name is
Troy Broussard and I am the State Director of AARP Kentucky.
AARP, which advocates for more than 100 million Americans age
50 and older, including the over 430,000 Kentuckians,
appreciates this opportunity to provide testimony at today's
hearing.
I will tell you, it is my distinct honor to also have the
opportunity to testify before my very own Member of Congress,
Representative McGarvey out of District Three in Louisville,
Kentucky. It is an honor to be here.
I am also a proud Army Desert Storm veteran. For me, being
a veteran embodies resilience, sacrifice, and a deep sense of
duty to my country, our country.
Prior to becoming the State Director of AARP Kentucky, I
led AARP's national veteran and military families initiative
and worked very closely with the Dole Foundation.
Helping veterans allows me to give back to those who shared
a very similar situation that I had in the military, and it
paved the way for me to serve my country and my community. It
is a way to honor their service and to ensure that they receive
the care, compassion, and recognition that they deserve.
The vast majority of veterans who need care are getting it
at home provided by their loved ones. That may be as simple as
driving someone to the VA for a doctor's appointment, managing
appointments, or finances or more complex things like helping
someone get dressed, bathe or, anything along those lines.
Increasingly, these tasks are becoming more and more
medical, changing a dressing, catheters, tube feeding,
operating equipment, and more. We call this family caregiving.
There are more than 48 million people across our great country
who are doing this work each and every day.
These caregivers are truly everyday heroes, the ones that
are sitting behind us here and out listening to this as well. I
will give you one, a hero like Terri, who lives in Indiana who
cares for her husband who served in the Air Force. She received
some support from VA and has used AARP's free caregiving
resources.
At the same time, she faces challenges such as healthcare
providers being dismissive and not appropriately communicating
to her about her husband's care.
Family caregivers are holding up their families and
America's long-term care system. While it is a labor of love,
it can also be overwhelming both personally and financially.
One out of three caregivers is spending at least 20 hours a
week on caregiving so it can also have an impact on their jobs
as well.
We at AARP have found that family caregivers spend, on
average, 26 percent of their income annually, or $7,200, on
caregiving. Those who care for our veterans spend about 50
percent more, more than $11,000, a year.
We are doing what we can to help. We have free resources at
AARP, information, and tools to help caregivers. That can be
found at aarp.org/veterans. We try to make sure that veterans
and their families get access to benefits that they are
eligible for and know what help is out there.
We need more than a website, okay? The reality is without
family caregivers, more Americans would have to rely on
government programs for their care. We estimate that value of
care being provided is about $600 billion a year. That is money
taxpayers are not spending because families are doing it for
free.
We are so thankful for the bipartisan, bicameral Assisting
Caregivers Today Caucus, or the ACT Caucus, co-chaired by
Representatives Jen Kiggans and Debbie Dingell.
We are hoping that Congress will recognize the incredible
contribution of caregivers and the money they are spending out-
of-pocket and advance bipartisan legislation to give a tax
credit to help offset those expenses.
We can do more to cut the red tape between Medicare, U.S.
Social Security Association (SSA), VA to make it a little bit
easier for caregivers. You know, we are seeing great strides in
states already. Oklahoma and Nebraska have passed tax credits
for caregivers already. In Kentucky this year, my team
successfully fought to increased access to broadband, increased
access to home care in Medicaid, and an increase in funding for
our senior meals.
We have also worked very closely with our Kentucky
Department of Veterans Affairs to share resources, specifically
like our military caregiving guide that provides caregivers
step-by-step instructions on how to help them through that
process and the special needs of a veteran.
In closing, I want to thank you all for bringing attention
to the millions of everyday heroes who are caring for their
loved ones who served our country. They need and deserve our
support and common-sense solutions that meets their needs, and
AARP is proud to provide support to them through advocacy,
resources, and research. Thank you.
[The Prepared Statement Of Troy Broussard Appears In The
Appendix]
The Chairman. Thank you, Mr. Broussard.
Captain Pruden, you are recognized for 5 minutes for your
opening statement.
STATEMENT OF JONATHAN PRUDEN
Mr. Pruden. Thank you, Chairman Bost, Ranking Member
Takano, and members of the committee for the opportunity to
speak about the tremendous contributions of the caregivers
providing care and support to our Nation's wounded warriors.
Caregivers play a critical and indispensable role in the
lives of these veterans and many have risen to the occasion
with love, pride, boundless energy, and unwavering commitment.
Many have faced mental, physical, and financial hardship along
the way.
We are grateful for the chance to speak on those challenges
today. Our perspective is informed by over 20 years of
delivering programs and services to wounded warriors.
Caregivers have been by our side every step of the way,
including my wife Amy.
Caregivers play a key role in how we serve through our
independence program, which helps veterans with moderate to
severe brain injuries, paralysis, or neurological condition to
live more independently and have better quality of life.
Caregivers have also been crucial partners in how we
provide care through our complex case coordination program,
which leverages VA, U.S. Department of Defense (DoD), and
community resources to rapidly triage and address the most
urgent needs of our veterans.
Caregivers have shaped our calls to action before this
committee in Congress. Caregivers drove our advocacy for the
Program of Comprehensive Assistance for Family Caregivers which
launched in 2011 and has grown to play a meaningful role in the
lives of more than 60,000 caregivers in 2024.
Caregivers helped set a vision for how we tested innovative
long-term planning through the Assisted Living for Veterans
with TBI pilot, which ran for 10 years and provided insights on
how we can better care for younger veterans who require
supportive living environments.
Caregivers, including many of those in this room, are a key
part of our strong support for Elizabeth Dole 21st Century
Veterans Healthcare and Benefits Improvement Act. This bill
includes many provisions that would support veterans and
caregivers, and I am pleased to highlight three of those today.
First, VA has many programs to support veterans. They can
be hard to navigate and are not uniformly available or funded
across the country. Caregivers are often left confused and
frustrated when they try to help their loved ones.
The Dole Act would require VA to expand access to home and
community-based services like Veteran-Directed Care to every VA
medical center also require VA to counsel veterans and
caregivers about these programs before they have to leave
PCAFC.
Second, caregiving often takes a huge emotional toll.
RAND's recent survey shows that 84 percent of post-9/11
caregivers show high levels of perceived stress which can
contribute to depressive thoughts and suicidal ideation. Sadly,
many are not connected to the support they need.
The Dole Act would authorize VA to provide grants to
organizations that support caregiver mental health and well-
being. It would also help mitigate some of the stress
associated with caregiving by ensuring better access to respite
care, as many of the members here today have discussed.
Third, post-9/11 caregivers are aging alongside the
veterans they support. As life circumstances change over time,
caregivers who are parents, children, and adult siblings may be
more likely to seek other care arrangements.
Finding alternative care solutions for veterans,
particularly those with the greatest needs, must be a priority
but it will take planning.
The Dole Act highlights one avenue through a pilot to
provide assisted living services to eligible veterans and
assess their satisfaction with the program. Most veterans and
caregivers want to remain at home as long as possible, but we
owe it to them have suitable options in the community when
staying at home is no longer an option or is not feasible or
safe.
Beyond passing the Dole Act, Congress can support
caregivers by helping them navigate complex systems of care. VA
has tremendous resources but they are not always easy to find
or understand.
Other Federal, State, and community resources exist but
they are not clearly connected. We can start by empowering VA
to create a system that helps centralize care coordination and
patient advocacy, particularly for those with the most complex
needs.
Caregivers often become the best advocates for their
veterans, but the fact is these veterans still need consistent,
coordinated care from VA. Congress can also help caregivers
plan for their financial future.
Based on Wounded Warrior Project's annual survey and RAND's
recent research, post 9/11 caregivers show substantial out-of-
pocket costs associated with caregiving. Caregiving duties can
also greatly impact the caregiver's ability to build and
maintain a career, placing them in even deeper financial
uncertainty.
To those ends, we support the Veteran Caregiver
Reeducation, Reemployment, and Retirement Act. We encourage
more oversight to help provide a clearer picture of how VA and
other Federal agencies can support caregivers now and into the
future.
It is also a fresh reminder for VA and Congress to reaffirm
their commitment to caregivers by resolving the financial
uncertainty and emotional anxiety created by the current
regulatory pause and review of PCAFC.
Thank you again for the opportunity to testify and I look
forward to your questions.
[The Prepared Statement Of Jonathan Pruden Appears In The
Appendix]
The Chairman. Well, I want to thank each of you for your
testimony. I appreciate that so much.
Ms. Chism, I want to thank you for personally putting your
story out here. I know that is not an easy thing to do and for
showing your family and what you are facing, to be the face of
the many others that are in the crowd and across this Nation.
We are going to go to questions, and I will recognize
myself for 5 minutes. Then we will go on.
Mr. Schwab, the Elizabeth Dole Foundation is strongly
supporting the Elizabeth Dole Act and the bills that would
support caregivers. What would be the most immediate impact on
caregivers if the Dole Act were passed?
Mr. Schwab. Thank you for this question, Mr. Chairman. We
have talked a lot this morning about the Elizabeth Dole Home
Care Act and while that is a major priority of the foundation,
it is not our only priority. We want to make sure that folks
understand the other legislation that is part of the omnibus
bill.
A lot has been said about the terrific and impactful ways
the Home Care Act will impact caregivers, and Vanessa talked
about some of them. I want to stress the fact that the
reimbursement rate for expenditure caps on non-institutional
care will go from 65 percent to 100 percent is life-changing.
We have caregivers who are providing support, for instance
with loved ones that have ALS, that are going into debt
supporting those in-home costs. Expanding VDC is critical. It
is a big part of the Home Care Act.
We have talked about the necessary mandate around warm
handoffs. That is not happening at the VA right now.
I also want to talk about some aspects of the bill that are
beyond the Home Care Act. There is an assisted living pilot
program that is essential. Access to care provisions, we have
heard from a lot of members this morning and from Vanessa about
how access and navigation continues to be a major issue.
We have talked extensively about the lack of mental health
and mental healthcare for caregivers. The reality is right now
that the programs that are offered are to the PCAFC program
participants, which is a small percentage of the overall
caregiving population and the omnibus bill would allow for
expansion of that.
We have also talked about the value and the transition, the
hard transition from caregiver status to survivor status, Mr.
Chairman. This bill, the omnibus bill, has survivor provisions
in it that are really vital to the community as well. The
impact is gigantic.
The Chairman. Ms. Chism, can you, kind of, share what the
biggest obstacles you face when trying to access VA and support
services such as respite care?
Ms. Chism. Thank you for the question. My biggest obstacle
when trying to access that is actually the VA. I have found the
VA employees are not educated in the programs that the VA
offers, nor do they understand the criteria for caregivers to
receive these support services.
I have actually experienced a VA social worker telling me
that I would probably figure it out before they would when
requesting assistance, and I never heard from them again. I did
figure it out.
There is also a huge issue with staffing within VHA
facilities resulting in their inability to provide appropriate
healthcare to our veterans and support services, especially
respite care for our caregivers.
I know we discussed the budget shortfall that we are all
aware of, and I do believe that that is having an impact. I
would like to know the extent of the impact that it is going to
continue to have on us.
We recently switched my husband's care over to the
Baltimore VA for respite care. There I was told for the first
time ever that I could get on respite, however, I need to
request it at least 2 weeks in advance.
That is not something that is really reasonable in my life
with the way I do not know if my husband is going to happen a
traumatic seizure and be in the hospital the next day. I do not
know what is going to happen.
I provide around the clock supervision for him, and I am
simply requesting occasional assistance. When I did receive
resident through the EDF Foundation I used those hours to
volunteer at my youngest daughter's school.
I am not asking for to go on elaborate things. We are
asking for every day, mundane tasks that most people can do,
like going to do grocery shopping without much thought.
The Chairman. Thank you.
Well, Captain Pruden, Wounded Warriors Project does a great
job of advocating the needs for veterans and PTSD and TBI. In
your view, what are the biggest gaps in the VA's current
support programs for caregivers and when they assist a veteran?
Mr. Pruden. Obviously, you have to have the supports in
place for the veteran and part of the Elizabeth Dole Act,
Section 105, covers access standards for rehabilitation care,
residential rehabilitative care because, as you know, those
with PTSD, TBI, and often comorbid substance abuse issues, when
they need to go into care usually it is precipitated by a
crisis.
It impacts their family and their children directly and say
I am ready to go. Give me help. Having to wait weeks and months
for care is not appropriate and not okay and too often that
impact, if it is allowed to go on, has hugely damaging effect
on our caregivers and their families.
As Vanessa pointed out and Dr. Richardson pointed out, the
VA is a giant, complex web of programs and services. We need
better case coordination for our caregivers so that they can
help to help navigate the system into the good programs that do
exist inside VA.
The Chairman. Thank you.
With that, I will yield back.
I have Representative Brownley. You are recognized for 5
minutes.
Ms. Brownley. Thank you, Mr. Chair and thank you Mr.
Ranking Member for allowing me to go. I am late for a meeting
so I appreciate it very much.
Ms. Chism, I just wanted to also chime in here to thank you
for being here today and your testimony. Everyone on the panel
gave excellent testimony today but yours really penetrates in
our psyche and it is really, really important to hear stories
like yours.
It means a great deal and it is most impactful to hear your
story and to hear your experiences. I just want to thank you
for that and really do honor your perseverance and your, as you
said, this is my choice and I will continue to make it.
It is just, to me, it gives me chills and I am very
impressed and very, very grateful to your service to our
country as well. Thank you for that.
Dr. Ramchand, I wanted to ask you about some elements in
the report, and I think the report highlights that caregivers
for veterans who are under the age of 60 are at higher risk of
depression and are less likely to seek care than non-
caregivers.
This is really an important point for me. I mean, just I am
not sure how we solve the problem. I think awareness that help
is out there I think is very important, but I also think that
perhaps we need to require some way, shape, or form, whether it
is by video or something that if someone is going to step up to
do a caregiving job that they need to listen to this video from
the VA that talks about the statistics that you have uncovered
here for folks that are under 60.
Most importantly, I think to make them feel that they are
not alone in all of this, that there are a whole sea of
caregivers like you going through similar things and to seek
help. I mean, it has taken us a long time to convince veterans
to seek help, and I think we need to, sort of, do the same
thing for caregivers.
If they are going to care give, do caregiving under the
envelope of the VA, I think the VA should be doing something to
make sure that they are aware of the programs and not feel
alone. Does that make sense to you or?
Dr. Ramchand. It does make sense. I think that in addition,
and thank you for the statement and the comment, I think that
we really explored alternative delivery models for that care.
I think that the current models that exist, and you
mentioned earlier telehealth is increasing and I think that
that holds a lot of promise and should be made more available,
but I think other methods like integrating mental healthcare
into primary care.
Asynchronous counseling we bring up in our report, which
is, kind of, text message-based counseling to help with stress,
all these alternative methods that, kind of, address this
barrier of time.
Vanessa's story may be. She is doing things all the time.
To even take 3 hours out to go to a mental health appointment
once a week or once every 2 weeks it might not be attainable.
How do we meet people where they are at?
Our report describes some of those options, but I think
that that is really, kind of, the critical. Even, you know,
even forcing them could create more stress. You know, we have
to let them kind of direct it.
That is what I think are some really unique opportunities
there.
Ms. Brownley. Okay, very good. I mean, I do not mean to use
the word force, but just a requirement that when you join the
program you have to listen to this 30-minute video so that
people understand what the services are and not feel alone.
I get your point. I really, really do. I also, you might
not know this, but when you talk about 20 percent of caregivers
in this group have had thoughts in the past year about suicide,
taking their own lives, I am just wondering if the VA is, if
those veterans who we know have committed suicide, do they know
this element of the fact that they potentially could be
caregivers?
I do not know whether--I will follow up with the VA to find
that out, but that would be an important data point.
Also mentioned about the interstate licensure but, you
know, within the VA we do have this telehealth and we can go,
you know, we have the supremacy law and we can go across State
lines so it is not so much of an issue within the VA.
Outside of the VA it is a whole other community care. It is
another challenge.
Dr. Ramchand. Right. For caregivers, most, you know, the
only ones that are getting mental healthcare from the VA are
those enrolled in that PCAFC program.
Ms. Brownley. Yes.
Dr. Ramchand. The majority of that, you know, 13.7, you
know, however many it is, million care military and veteran
caregivers that is not really an option. They are receiving
care in the community.
Ms. Brownley. Yes, very good. You mentioned a tax credit,
which I think is a really good idea. I think it should be a tax
credit that we did in the rescue plan which gives folks the
money up front and not having to wait or be required to do
their taxes. Many people do not make enough income to even do
their taxes but we can talk about that later.
Mr. Broussard, you mentioned that Oklahoma and Kentucky
both have tax credits. What do their tax credits look like?
Mr. Broussard. Yes. It is actually Oklahoma and Nebraska.
Ms. Brownley. Oh, Oklahoma and Nebraska.
Mr. Broussard. That is okay.
Ms. Brownley. That is exactly what I wrote down but I did
not say that.
Mr. Broussard. You made it through Broussard, pronouncing
that, so you are good----
Ms. Brownley. Okay, good. Okay, good.
Mr. Broussard [continuing]. in my book. It is a $2,000 tax
credit that is for most caregivers, but it is a higher maximum
of $3,000 for family caregivers of a veteran. Those were passed
by those states and I think that is a great model to look at it
and to start with.
$2,000 for regular caregivers and if it is with veterans it
would be up to $3,000 in those states.
Ms. Brownley. Great. Great, thank you.
Mr. Broussard. Thank you so much.
Ms. Brownley. Dr. Ramchand, one last question. You stated
that your study says that caregivers generally forego around
$4,500 in earnings each year. That seems low to me but that is
what the conclusion is?
Dr. Ramchand. Yes. It is an average and it is we really
base it upon, well, we look at income and we look at comparing
to non-caregivers' and caregivers' income. What we found is
that that is mostly driven by work disruptions.
As you could imagine, around 27 percent of caregivers in
our study reported a work disruption. 11 percent switched jobs,
you know, so we have that broken out into the types of
disruptions that they have experienced.
Certainly, many caregivers are leaving the labor force
completely and we have those numbers as well. There are a lot
that are juggling both caregiving and work and so we present an
average.
Certainly, you know, a lot of caregivers that we have heard
anecdotally, as well as we have a qualitative component of the
report, that describe many of whom have had to give up, you
know, participation in the labor force.
Ms. Brownley. Very good.
Thank you, Mr. Chairman. I yield back.
The Chairman. Ranking Member, you are recognized.
Mr. Takano. Thank you, Mr. Chairman. I want to just commend
Congresswoman Brownley for her tremendous expertise and work
she has done in this policy area.
Ms. Chism, you testified, and I want to just make sure that
I am getting it right, you started caregiving at a young age;
is that right? You are doing this full-time?
Ms. Chism. Yes. I started when I was 26.
Mr. Takano. Oh, you started when you were 26, you said? I
am assuming your husband is 100 percent service-connected
disabled and he gets 100 percent and he gets a disability
pension?
Ms. Chism. Yes.
Mr. Takano. The stipend you get as a--you are enrolled in
the family caregiver program so you are get a stipend. That is
helpful, the combined income, and I do not want to delve into
all the other ways in which your family may be supported, but I
am troubled by the fact that people your age, caregivers your
age, you are not only out of workforce but the stipend you are
getting it is, you know, it is what it is.
You are not earning any Social Security credit for that,
right?
Ms. Chism. Yes. I have no Social Security. There is no
credit for that whatsoever. I have actually recently. I am
employed, but I had to find a job that was I actually work for
a nonprofit VSO that they are incredibly flexible. I work
remotely because I am concerned that we will be just completely
eliminated, which would cause financial ruin for my family.
I mean, even though I would like to point out that stipend,
I am tier 3 in the DC, Maryland and Virginia (DMV) area and I
get paid about $110 a day----
Mr. Takano. Okay.
Ms. Chism [continuing]. for 24-hour care. Yes. That is
something, yes.
Mr. Takano. You are certainly saving the American taxpayer
money by being a full-time caregiver.
Ms. Chism. Right.
Mr. Takano. You having to go out and find a job that allows
you to do this work, I think I want to work with the chairman
to fix this particular issue that you are not earning Social
Security credit.
It is a real strain on the number of years you are going to
be doing this.
I am also concerned about you have three young kids, and I
think it could be a challenge that you are taking care of kids
and husband and also sometimes families are also taking care of
elders.
I am hearing that the kids are likely to have emotional
conduct problems in these households. I am not saying that
yours are having those problems, but that is a challenge for
everybody involved. Are the children eligible for, you know,
Civilian Health and Medical Program of the Department of
Veterans Affairs (CHAMPVA) as well and able to get mental
health services they might need?
Ms. Chism. We, because my husband was medically retired, we
have access to Tricare so we have Tricare. Though the veterans
who were not medically retired they do not have that.
Mr. Takano. There is a gap there is what----
Ms. Chism. There is a gap there, yes.
Mr. Takano. We need to, because I am thinking in such cases
where we have caregiver needs we need to think about not just
the caregiver but the kids in the household, too, right?
Ms. Chism. Absolutely.
Mr. Takano. Making sure that they are supported.
Dr. Ramchand, how do you propose that VA expand its
definition of caregiver to include those caring for veterans
with a substance use disorder or a mental health condition?
Dr. Ramchand. Well, it is a great question. There is not
much precedent for it. We really scratched the surface by
looking at people who are helping with memory tasks, as well as
people who are helping manage mood and anxiety.
We believe that there needs to be more work to really start
quantifying the aspects of caregiving to individuals with these
conditions so we can delineate more what those tasks involve,
which are most beneficial so that we can come up with some,
kind of, proxy similar to how we use ADLs and IADLs, but
something that is more cognizant of those mental health
conditions.
Right now, we do not have, kind of, the empirical data to
do that. In the meantime, I think that we can take examples
that account for narratives provided by caregivers that account
for these things.
I realize that that might be laborious but we do have,
kind, of technologies right now that could be really helpful in
starting to quantify what these caregivers are doing and take
conditions like this into consideration so that we can really
start thinking more inclusively about caregivers to those with
these challenges.
Mr. Takano. Well, I just want to ask you another follow-up,
if I can? Do you think VA has a role to play in ensuring
caregivers are connected with additional support services like
SNAP, WIC, and Supplemental Security income (SSI)? What are
some of the ways that VA can connect veterans and caregivers
with other Federal benefits?
It is, kind of, like an add-on to what I was talking about
with making sure that the caregiver in the family program is
getting, like, Social Security credits at least.
Dr. Ramchand. I mean, I am a big proponent and I think the
research supports these no wrong door policies. When a
caregiver goes in to seek support for the first time the person
that they are talking to, whether that is at the VA or at a
VSO, be aware of these benefits or at least be thinking about
these benefits so that they can help the caregiver figure it
out.
As we have heard, caregivers are very burdened. They are
very tired. Having them, kind of, cruise around Googling what
benefits that might be available to them is probably not the
most efficient way.
Those who, kind of, you know, raise their hand to help
support caregivers, ensuring that they have that knowledge and
can help them apply for those programs I think it would be a
tremendous asset.
Mr. Takano. Well, thank you. I have gone over my time.
I am going to yield back, Mr. Chairman.
The Chairman. Mr. McGarvey.
Mr. McGarvey. Thank you very much, Mr. Chairman.
Ms. Chism, I just want to echo everyone else's comments.
Your testimony is incredible. It is impactful. It is
courageous. We are so appreciative of you and your service and
I want to make sure we recognize.
I would also like to thank RAND, the Elizabeth Dole
Foundation, everyone on this panel. Thank you. Thank you for
the incredible work you all have done to develop and share the
insights of this year's caregiver report, a truly phenomenal
job. I hope a lot of people are paying attention to what you
all are saying today.
You have identified how caregivers more than ever before
are invested and how much time and effort and getting a deeper
understanding of their unique experiences, their strengths,
their challenges, and character.
I also want to extend a personal warm welcome to Mr. Troy
Broussard, the State director of the AARP from my hometown of
Louisville, Kentucky, a proud Army veteran to boot. Thank you,
Mr. Broussard, for all of your service.
I appreciate what you do for the caregivers throughout our
district in the great Commonwealth of Kentucky. It is always
great to have another Louisvillian up here.
Mr. Broussard. Right.
Mr. McGarvey. We will get into some questions now that we
thanked everybody. I would like to explore whether there are
promising home care support programs and models that you all
seen implemented or ideas you have on how the VA can implement
and test programs that are more responsive to the caregivers'
unique needs and problems.
While there are over 14 million military and veteran
caregivers, the RAND study suggests that 40 percent of adults
this country provides some form of caregiving. While VA has
more work to do to improve its Caregiver Support Programs, they
are actually leading the way in terms of large-scale support
infrastructure for caregivers.
The VA is uniquely positioned, given its size, to inform
broader models of support that impact the lives of millions of
Americans providing care to non-military veteran loved ones.
Mr. Broussard, you mentioned different models in your
testimony and ideas such as tax credits. Do you think the VA is
a good testing ground for these sorts of innovative ideas to
assist our caregivers?
Mr. Broussard. Thank you, Congressman McGarvey, for that
question. The VA, we feel, is a good place to test those
innovative ideas to support those caregivers.
Both VA and non-VA caregiver support efforts can learn from
and build on each other. You know, the self-direction programs
that allow family caregivers to be paid for providing care for
their loved one are extremely important. That model is in the
VA under the Veteran-Directed Care, which is being expanded in
VA, which is great.
Like I mentioned earlier, you know, Oklahoma and Nebraska
have enacted those tax credits so that could be something we
feel it would be very important.
Then last, the VA Program of Comprehensive Assistance for
Family Caregivers provides family caregivers training to assist
in delivering these personal care services to a veteran. I
think that would be important. Medicare now reimburses for
that.
I think that could be a good testing ground with the VA to
attempt to do that. We will be more than happy to help support
that as well.
Mr. McGarvey. I appreciate that and that is the support we
want to see. In fact, something I have said before and I will
continue to say and you will see more from me in the coming
months and years because I think the VA should have a fifth
mission of innovation because of its ability with its broad
scale to implement some of these ideas that, of course, are not
just fantastic for our veterans, the men and women who are
willing to put on a uniform and sacrifice everything for us,
but they can also be applied outside of the veteran context and
be beneficial to everybody.
Dr. Ramchand, I will go to you next and ask where do you
see opportunities for innovation and impact in the realm of
home support service programs at the VA? How can the VA better
develop pilot programs or better scale what they are already
piloting to help our caregivers?
Dr. Ramchand. I think that really the opportunities abound.
I think, as I have been, kind of, stating, the big need is
support for mental healthcare and substance use. What does
home-based care look like? What are those needs? I think there
are real opportunities for pilot.
The VA has a strong research arm within it and so I think,
you know, there is a lot of, kind of, research potential should
the, you know, researchers be encouraged to start looking at
veteran caregivers, especially those to do with mental health
or cognitive conditions, as well as complex needs.
I do think that those are ways in which the VA could really
be that proving testing ground for some of these novel
approaches.
Mr. McGarvey. Okay. Anything on the pilot programs or
better scaling? Sure, go ahead. I mean, it was part of the
question to you, but Mr. Schwab, you seem to want to jump in.
Mr. Schwab. I would just like mention----
Mr. McGarvey. You have got 4 seconds.
Mr. Schwab. I would just like to say respite has come up
quite a bit today. Vanessa talked about her challenges around
utilization of respite and the delivery of respite.
The VDC, that program, we see a fast expansion across VA to
open up those channels, but I would also like to acknowledge
that she mentioned a program that we delivered through the Dole
Foundation that was flexible, timely, and responsive to better
respite, caregiver respite needs when they need them.
I am a big believer in what you said around innovation and
VHA is looking at that respite model and seeing how it might be
able to be pilot expanded across VA. We would really like to
see that happen.
Mr. McGarvey. Thank you all so much. I really appreciate
your testimony and I appreciate your service. Thank you.
The Chairman. At this time if the Ranking Member has any
closing remarks?
Mr. Takano. Mr. Chairman, I think this has been a very
bipartisan, productive, committee hearing and I want to commend
you for bringing us all together.
I want to express my gratitude to all the witnesses that
appeared before us today.
I want to thank all my members for being here, especially
as we are ending, you know, the October recess. You all should
know that it is an impressive number of members that showed up.
It is because your cause, I think, is so sympathetic.
Again, Ms. Chism and all the caregivers who are here in the
room today, the Nation owes you a great debt of gratitude. We
owe you more than gratitude. We owe you real support, and I
will be working really hard with the chairman to make that
happen. Thank you so much.
The Chairman. I want to thank the Ranking Member and I
agree with his remarks. I am going to associate myself with
that and each one of the witnesses.
Ms. Chism, I did not express it, and it is not easy to come
before Congress, but I guarantee you the Ranking Member was
right and the amount of members that made sure they were here
to discuss this.
I want to thank all of the witnesses, but I also want to
thank all the caregivers that are out there in the audience
today. Thank you for being here.
We could not do our work without the advocacy that you do
to inform us of the problems that we face, not only in the
caregiver realm but also as we try to make sure that the VA is
doing what the VA is supposed to do.
Many of the issues that were raised today are addressed in
the passage of H.R. 8371. That is the Dole Act. We appreciate
your support.
With that, I ask unanimous consent that all members shall
have 5 legislative days in which to revise and extend their
remarks and include extraneous material. Hearing no objection,
so ordered.
The hearing is adjourned.
[Whereupon, at 12:59 p.m., the committee was adjourned.]
=======================================================================
A P P E N D I X
=======================================================================
Prepared Statement of Witnesses
----------
Prepared Statement of Colleen Richardson
Good morning, Chairman Bost, Ranking Member Takano, and Members of
the Committee. I appreciate the opportunity to discuss VA's Caregiver
Support Program (CSP). I am accompanied today by Ms. Laura Duke, VHA's
Chief Financial Officer. VA understands the critical role caregivers
have in supporting the needs of Veterans and the importance of
supporting Veteran caregivers throughout their caregiving journey. VA
is proud to be a leader in caregiver support through implementation of
the Program of Comprehensive Assistance for Family Caregivers (PCAFC)
and the Program of General Caregiver Support Services (PGCSS).
The Caregivers and Veterans Omnibus Health Services Act of 2010
(P.L. 111-163) mandated the creation of PCAFC and PGCSS. PGCSS is
available to caregivers of Veterans of any era as long as the Veteran
is enrolled in VA health care and needs personal care services. Through
PGCSS, caregivers have access to skills training, coaching, peer
support, telephone support, and respite care, among other services VA
provides. PGCSS is available to a broader group of Veterans and
caregivers than our other program PCAFC, which has been expanded
several times. PCAFC was originally designed to support Family
Caregivers of Veterans or members of the Armed Forces undergoing
medical discharge who incurred or aggravated a serious injury in the
line of duty on or after September 11, 2001, and who met other program
requirements. Section 161 of the VA Maintaining Internal Systems and
Strengthening Integrated Outside Networks Act of 2018 (P.L. 115-182)
phased in expanded PCAFC eligibility to Family Caregivers of eligible
Veterans. Accordingly, on October 1, 2020, PCAFC was expanded to
eligible Veterans who incurred or aggravated a serious injury on or
before May 7, 1975, and on October 1, 2022, PCAFC was expanded further
to include eligible Veterans of all eras.
Through PCAFC, Family Caregivers have access to all of the supports
and services available through PGCSS. Family Caregivers in PCAFC are
also eligible for instruction, preparation, and training to assist in
delivering personal care services to the eligible Veteran, mental
health counseling, and beneficiary travel. In addition, PCAFC
designated Primary Family Caregivers are eligible for respite care, a
monthly stipend, access to health care coverage through the Civilian
Health and Medical Program of the Department of Veterans Affairs, and
certain legal and financial services.
Today, through PCAFC and PGCSS, CSP is supporting more caregivers
of Veterans than ever before. As of September 20, 2024, over 25,000
caregivers are receiving support through PGCSS, and over 62,570 Family
Caregivers are participating in PCAFC. I appreciate this opportunity to
share some of the work we have accomplished to deliver more support to
more caregivers than ever before.
CSP named Fiscal Year (FY) 2024 ``The Year of the Caregiver, The
Whole Caregiver.'' Throughout the year, we have focused on enhancing
the delivery of clinical support to caregivers and implementing other
programmatic and process improvements based on feedback we heard from
caregivers, Veterans, Veterans Service Organizations, and Members of
Congress. I will briefly mention three areas in which we have been able
to deliver exceptional results for caregivers, directly driven by the
feedback we received.
First, we have seen tremendous growth with caregivers using respite
care. Respite care is a critical resource for caregivers since
caregivers must take care of themselves so that they can care for their
Veteran. Through our Respite Champions initiative, CSP trained Respite
Champions within each Veterans Integrated Service Network (VISN) to
serve as subject matter experts in the benefits of respite, respite
resources, and respite funding. Since implementing the Respite
Champions initiative, the number of caregivers using respite has
increased by 278 percent since the end of Fiscal Year 2022.
Additionally, we implemented a Virtual Psychotherapy Program for
Caregivers (VPPC). VA can now offer virtual psychotherapy services to
Family Caregivers participating in PCAFC. Through VPPC, VA is better
able to address and provide the mental health counseling Family
Caregivers request and deserve. CSP has activated clinical resource
hubs in all 18 VISNs. As of September 6, 2024, VPPC completed over
13,916 psychotherapy visits with Family Caregivers participating in
PCAFC during FY 2024.
Finally, we heard overwhelmingly from caregivers of their desire to
receive Cardiopulmonary Resuscitation (CPR) Training--so we made it
available. VA designed a process to train caregivers in CPR. As of
September 6, 2024, CPR training for caregivers has been implemented at
70 VA facilities and continues to grow. In addition, CSP collaborated
with the American Red Cross to develop and publish a ``Hands-Only'' CPR
video to train caregivers on this life-saving skill.
These are just a few of the expanded clinical supports we have been
able to deliver to caregivers over the past year. Through continued
outreach, we will work to ensure caregivers are aware of these services
and can access them, where and when it is right for them. These
accomplishments do not overshadow VA's recognition that there is more
work to be done to support of caregivers, and specifically more work to
do to improve PCAFC.
As you may know, on June 9, 2022, VA announced a suspension of
annual reassessments with certain exceptions. This suspension includes
annual reassessments of Veterans or Service members who applied for
PCAFC or who were approved to participate in PCAFC before October 1,
2020, and their Family Caregivers, collectively known as ``the legacy
cohort.'' This suspension remains ongoing while we closely examine
current PCAFC eligibility requirements and consider any changes that
may be needed to ensure PCAFC is working as intended. As a result of
this review and our continued deliberations, VA is now working to
publish a notice of proposed rulemaking (RIN 2900-AR96) to propose
amendments to the eligibility criteria, definitions, and other elements
of the evaluation process for PCAFC.
This rule will mark a significant step toward further improving
PCAFC and delivering a program that meets the needs of eligible
Veterans of all eras and their Family Caregivers. Once the proposed
rule is published, VA will share it widely and encourage the public to
submit comments and feedback about any changes being proposed. We will
carefully consider all feedback received to determine whether
additional changes may be needed.
As the rulemaking process continues, we are committed to ensuring
that Veterans and their caregivers have the care and support they
deserve. We encourage Veterans and caregivers to visit our website at
www.caregiver.va.gov to learn more about these programs and other ways
VA supports caregivers. We also have CSP teams at every VA medical
center, and information about how to contact these teams is available
on the website.
Conclusion
We are committed to always earning the trust of Veterans and their
caregivers and will work hard to continue the improvements we have made
thus far. Your continued support is essential to providing this care
for Veterans and their families. On behalf of VA and CSP, we thank you
for the opportunity to be here and welcome your continued
collaboration.
Prepared Statement of Rajeev Ramchand
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Prepared Statement of Steven Schwab
Introduction
Chairman Bost, Ranking Member Takano, and Members of the Committee,
thank you for the opportunity to testify today. My name is Steve
Schwab, and I am the CEO of the Elizabeth Dole Foundation (EDF), a
national non-profit whose mission is to strengthen and support military
and veteran caregivers, founded on the legacy and service of Senator
Elizabeth Dole.
Before I begin, I want to recognize the more than 60 Dole Caregiver
Fellows we have in attendance today, as well as many more watching
online. They have taken precious time away from their caregiving duties
to watch and be here and will be visiting your offices this afternoon
sharing their message of hope and calls to action for all Members of
Congress. These caregivers provide a tremendous economic value,
approximately $119 Billion at a minimum, according to the newly
released RAND study. Beyond their economic value and even more
importantly, they promote better outcomes for veterans, options for
care both in and outside of the home, family cohesion, and community
involvement. Simply put, their value to their loved ones cannot be
overstated.
In addition, given that so many of our caregivers will transition
to veteran survivors, I also want to recognize that this is Gold Star
Families Remembrance Week. In many ways, these caregivers and survivors
have ``borne the battle'' mentioned in President Lincoln's speech and
deserve all of the honor and support this Nation can offer.
Yesterday, the Elizabeth Dole Foundation was pleased to welcome
over 600 guests to our 9th Annual Convening launching the RAND study
outlined by Dr. Ramchand in his testimony. This landmark study,
released 10 years after the initial RAND report outlining challenges in
military and veteran caregiver community, reflects what we see every
day at EDF as well as in the moving testimony from our Dole Fellow,
Vanessa Chism. We could not be more proud of her and her family for
being willing to share their experiences to help others.
In reviewing the new RAND report and considering our own everyday
experiences with military and veteran caregivers, we have coalesced
around four interconnected areas of focus, which will guide our
programmatic and advocacy efforts moving forward.
Economic Mobility:
As Dr. Ramchand testified, the RAND report identified multiple
factors influencing the economic stability of caregivers. Lost wages,
inability to plan or save for retirement, unforeseen out of pocket
expenses, and unemployment because of caregiving duties all often
result in financial strain and uncertainty on caregiving families.
Family members often leave jobs to care for a loved one and can no
longer contribute to retirement plans and lose valuable professional
credentials over time. They also often find that their employers simply
do not recognize the reality of life at home or give them the support
they need, like paid family leave. We are proud to be able to provide
Emergency Financial Relief through our Hope Fund supported by the Bob
and Delores Hope Foundation, but we must do more. We must give
caregivers and their families the opportunity to achieve not only
short-term economic stability, but also long-term economic mobility to
ensure the hope of a better life for generations to come. Fortunately,
there are several actions Congress can take to address this and other
situations to relieve some of the financial burden facing these
caregivers:
First, Congress must demand the immediate publication of the Notice
of Proposed Rulemaking (NPRM) regarding the VA's Program of
Comprehensive Assistance for Family Caregivers. (PCAFC). This program,
which provides vital financial and other support to those caring for
veterans with the most complex needs, has been an economic lifeline.
However, since March 2022, the program has been on hold while the VA
reviewed concerns related to its eligibility criteria. While we applaud
the VA for recognizing and working to address the concerns, the agency
and Administration have been working on an NPRM for almost 2 years,
leaving those impacted in significant financial limbo. Numerous
organizations, including EDF, recently sent a letter to the President
requesting the publication of the proposed rule, and we would welcome
Congress' oversight on this issue.
In addition, EDF requests that consideration be given to the amount
of demonstrated time a caregiver spends coordinating care for the
veteran as part of the PCAFC assessment process. Veterans requiring
degrees of supervision and protection are eligible for PCAFC, and
ensuring access to health care and services should be a major
consideration under this criterion.
With respect to the legacy cohort of PCAFC participants, those
Post-9/11 caregivers who were admitted to the program prior to
September 30, 2020, yet again face an uncertain future due to the
pending changes in eligibility requirements. Many of these caregivers
have repeatedly been found eligible for the program over the years and
endured multiple pauses, regulation and leadership changes, lack of
previous program standardization, and questionable assessments. While
they have benefited from the stipend, the emotional toil and financial
uncertainty have weighed heavily on caregivers and veterans alike.
Therefore, EDF asks Congress to work with the VA and relevant veteran
service organizations to consider ``grandfathering'' this population of
approximately 14,000 caregivers into PCAFC, except in cases of fraud or
abuse, and allow the VA's Caregiver Support Program (CSP) to focus on
its mission of supporting all generations of caregivers, rather than
continuing this year's long struggle.
With respect to legislation that would positively impact the
economic mobility of family caregivers, EDF endorses the following:
H.R. 7165/S. 3702, the Credit for Caring Act, introduced
by Congressman Mike Carey and Congresswoman Linda Sanchez, and endorsed
by our partner, AARP, which would offer a $5,000 tax credit to eligible
working family caregivers, both veteran and civilian, to offset the
over $8,500 in out-of-pocket caregiving expenses incurred every year.
This legislation would clearly remove some of the financial strain
experienced by these families, especially those veterans who are either
not associated with the VA or have experienced difficulty accessing the
programs and services available to them and, instead, pay out of pocket
for their needed goods and services.
H.R. 9276/S. 3885, The Veteran Caregiver Reeducation,
Reemployment, and Retirement Act introduced by Congressmen Morelle and
Ciscomani. For many enrolled in PCAFC, their caregiving role will come
to an end, hopefully due to improvement in the veteran for whom they
care, but, sadly, often due to the passing of the veteran. This
legislation would do many things to alleviate the caregiver's financial
strain and anxiety, including extend enrollment in the Civilian Health
and Medical Program of the Department of Veterans Affairs (CHAMPVA) for
up to 180 days after disenrollment from PCAFC, allow the VA to pay
caregivers up to $1,000 to maintain professional licensure, study the
feasibility of establishing a retirement plan for family caregivers,
and study the barriers and incentives to hiring former family
caregivers to work for the VA.
While EDF strongly endorses this legislation, we also suggest
an amendment to help alleviate a current inequity related to
retirement planning for parents enrolled in PCAFC who care for
their service-disabled child--currently approximately 2,500
individuals. The VA offers a program called Dependency and
Indemnity Compensation; a monthly tax-free monetary benefit
offered to eligible survivors. This program is often a
financial lifeline for those who are eligible, and spouse
survivors are rightfully not subject to an income threshold.
Parent caregivers, however, are subject to an income threshold,
in some cases as low as approximately $18,000/year. For
example, Christine Cooley of Florida cared for her severely
combat-injured Marine son, Josh, until he passed away last
October. As a single mother, she was his caregiver for 17 years
following his severe injuries. Now at age 73, she is unable to
return to work. Because she is a parent, she is subject to the
DIC income limit, and her $23,000 annual social security
payment exceeds the threshold. With Social Security now her
sole source of income, she is in danger of losing the home she
shared with her son after his injury.
As Congress considers H.R. 9276, EDF requests that the
Committee consider abolishing or greatly increasing the DIC
income limits for non-spouse caregivers enrolled in PCAFC,
currently approximately 18,000 caregivers, allowing them to
plan for retirement and leaving them far less financially
vulnerable when their caregiving roles come to an end.
H.R. 3651, the Love Lives on Act of 2023 introduced by
Congressmen Dean Phillips and Richard Hudson. As I mentioned
previously, military and veteran caregivers often become survivors, and
many caregivers we encounter have significant concerns about what
happens to them financially if/when the veteran passes away. In
addition to the grief they experience, they also can experience benefit
loss. Among other things, the legislation would allow surviving spouses
to retain the Survivor Benefit Plan (SBP) and Dependency and Indemnity
Compensation (DIC) upon remarriage at any age and allow surviving
spouses to maintain eligibility for education benefits under the Fry
Scholarship and Dependents Education Assistance upon remarriage or if
that marriage subsequently ends due to death, divorce, or annulment.
Finally, it allows remarried surviving spouses to regain their TRICARE
benefits if that marriage subsequently ends due to death, divorce, or
annulment.
Mental Health and Wellness
The second and third focus areas identified by EDF through the
findings in the RAND report are a need to support the mental health and
wellness of the caregiver and to address the unique needs of children
in the caregiving home.
As Dr. Ramchand noted in his report, the mental health toll on
family caregivers is tremendous, with 43 percent of those caring for a
veteran under the age of 60 meeting the criteria for depression, and a
staggering 22 percent of that same population reporting suicide
ideation. Thirty-six percent of those caregivers wanted mental health
treatment but did not get it, mostly because they lacked the time to do
so or feared how being hospitalized or taking medication would impact
their ability to care for their loved one. The good news is that we, as
a society, have raised awareness of the need to identify mental health
needs. Now we need to identify ways to address them more easily.
At the same time, 27 percent of military and veteran caregivers are
also raising a child, and 39 percent of those children help with at
least one caregiving task. It is important to note that, in addition to
assisting with activities of daily living like administering medication
and feeding, young children are also learning to modify their behavior
to avoid ``triggering'' a parent or, like Vanessa said, for those with
cognitive issues, learning to remind their dad why he is at the grocery
store. Supporting these families and ensuring safe households for
veterans and their families is not only the right thing to do; it is
also the smart thing to do, as many of these children often grow up
with a desire to serve in the military themselves.
Keeping this data in mind and to ensure better outcomes for
caregivers, the veteran, and the entire family, the Elizabeth Dole
Foundation recommends and endorses the following:
Expand Access to mental health care beyond those enrolled
in PCAFC. The recent availability of mental health support for veteran
caregivers enrolled in PCAFC has served as a lifeline for many who
previously struggled without access to care. While caregiving for a
loved one can be incredibly rewarding for the caregiver and often is
vital for the well-being of the veteran, the mental health toll on
caregivers can be daunting, as has been noted above. Therefore, we
encourage Congress to, at a minimum, broaden access to mental health
care for those beyond PCAFC to include those enrolled in the Program of
General Caregiver Support Services (PGCSS) under CSP.
H.R. 3581 the Caregiver Outreach and Program Enhancement
(COPE) Act, introduced by Congresswomen Jen Kiggans and Chrissy
Houlahan, would improve access to mental health support for veteran
caregivers by establishing grant programs that support their overall
mental health and well-being. This type of support serves the caregiver
and the veteran for whom they are providing care by addressing the
stress, anxiety, and depression that can be associated with caregiving.
It also gives options to caregivers who may not be comfortable or
eligible to get services through the VA. While this legislation has
passed in the House of Representatives, we strongly support its final
passage in both Houses of Congress.
H.R. 8165, the VA Marriage and Family Therapists Equity
Act. introduced by Congresswoman Julia Brownley, would expand access to
professional therapists for caregivers and veterans by removing an
outdated licensing requirement that limits the availability of
appropriate qualified therapists. Due to the nature of caregiving and
the general stress on families today, EDF is seeing, anecdotally, a
significant increase in the number of marriages, families, and children
that need support. This legislation would go a long way toward
addressing the availability of needed therapists.
Identify/Develop a scale to accurately measure the
caregiving intensity of those caring for individuals with mental health
and cognitive disorders. The RAND report notes that while scales exist
to measure caregiver intensity, they may be biased in how they are
constructed by assigning higher intensity levels to those providing
support with Activities of Daily Living, such as helping care
recipients bathe or dress, versus those caring for individuals with
mental health and cognitive deficits. Given that the report also cites
a higher incidence of mental health and cognitive issues for care
recipients under the age of 60, as well as a higher incidence of mental
health needs among their caregivers, it is important that a scale be
developed to accurately measure their caregiving intensity, so we may
better understand and attend to their needs.
Improving the Care Ecosystem for Veterans and their Caregivers
Given the expansive nature of RAND's report, as well as our daily
experience with caregivers, the fourth focus area identified by EDF is
the need to Improve the Care Ecosystem for Veterans and their
caregivers to ensure the remaining needs of this population were
captured. This broadly encompassing area includes a focus on
improvement and increased access to programs and services that enhance
and promote both the veteran and caregiver's whole health. EDF notes
that, while potentially eligible, veterans and their caregivers must
navigate a complex array of benefits and services to find the right
``Easter Egg'' and often are not aware of programs that could benefit
them. In addition, there are gaps and outdated restrictions on many
programs that limit access to those in need. The near constant effort
to identify resources and advocate on behalf of the veteran can weigh
heavily on both the caregiver and veteran.
In recognition of this struggle and the effort to improve the care
ecosystem in the clinical setting, in the home, and in the community,
EDF recommends the following:
Addressing the current Veterans Health Administration
(VHA) Budget Shortfall. While we appreciate that Congress acted quickly
to address the funding shortfall for the Veterans Benefits
Administration, the challenge remains to fund VHA at appropriate levels
to ensure veterans and their caregivers receive needed and earned care
and services. While the Caregiver Support Program is a small part of
the VA, the impact of the shortfall on this program shows the overall
impact at the operational level for veterans and their caregivers.
Abolishing front line positions to disguise need, hiring freezes, a
lack of clinical providers and social workers, and budget cuts to vital
programs like respite that were just finally gaining traction,
endangers veterans and caregivers.
In addition, prior to the identification and announcement of
the shortfall, multiple new programs impacting veterans,
caregivers, and survivors were on track for full
implementation. The Family Resource Coordination Program
intended to connect families with needed services both inside
the VA and in the community to prevent many of the issues we
have heard about today has now gone from a phased
implementation plan at each VA Medical Center with a full-time
dedicated employee to a pilot program. This will certainly
delay access to this service for many caregivers and families
in need. The Survivor Assistance and Memorial Affairs program
housed under VHA is designed to offer personalized supportive
services to families, caregivers, and survivors at the end of a
veteran's life is now unable to move forward as planned at each
VA medical center. Last, the establishment of a lead social
worker at the VISN level to standardize services, establish
training protocols and serve as a point of contact for
exceptionally complex cases was put on hold. All these programs
and services are intended to connect caregivers and families
with resources before a crisis occurs and could potentially
promote cost savings in addition to the added peace of mind for
the
Expansion and Further Adoption of the Campaign for
Inclusive Care. EDF partnered with the VA to train clinicians and staff
on the practice of inclusive care through our Campaign for Inclusive
Care. The program is intended to improve the health outcomes for the
veteran, reduce the stress and burden on the caregiver, and reduce
burnout on the part of providers because of more effective visits. CIC
also shows promise in reducing VA costs by minimizing ER visits and
increasing medication adherence, promoting better outcomes for the
veteran and family. The program has been well received and veterans and
caregivers would benefit from its further expansion.
Passage of H.R. 4518, The Care Act of 2023 introduced by
Chairman Tester and Senator Braun establishing the ``Pathway to
Advocacy''. This legislation would allow knowledgeable organizations to
assist veterans and caregivers in navigating VA services and supplement
overwhelmed social workers.
Discussion and passage of H.R. 9399, the Coordinating
Care for Senior Veterans and Wounded Warriors Act recently introduced
by Congressmen Morelle and Ciscomani. The VA is implementing its new
Care Coordination and Integrated Case Management program which could be
helpful for some veterans. For those with the most complex needs, this
legislation creates a pilot program to offer a higher level of
assistance and is a firm step forward in the establishment of more
effective care coordination. We look forward to continuing to work with
the Committee on this important issue.
Passage of H.R. 542, the Elizabeth Dole Home and
Community Based Services for Veterans and Caregivers Act of 2023,
introduced by Congresswoman Julia Brownley and modified favorably in
the Senate. In addition to the Caregiver Support Program, the VA has
many programs that, if accessed, benefit caregivers both directly and
indirectly, most of which are housed under Geriatric and Extended Care
(GEC). At EDF, we see and hear about the positive things that can
happen when veterans and caregivers are connected by caring and
passionate providers and social workers to the programs and services
that enhance their care and their quality of life. Additional respite
services, Veteran Directed Care, Home-Based Primary Care, and the
Homemaker Home Health Aide programs are just some of the programs that
support veterans in their homes and can serve as a lifeline for
veterans and caregivers in need. Where available, the Veteran Directed
program, for example, has incredibly high satisfaction rates. The
program, a joint offering from the VA and the Department of Health and
Human Services, offers veterans and caregivers greater choice and
control over their care and services. They can use the program to hire
familiar friends and family to provide unskilled care--especially
important to those with mental health needs and traumatic brain
injuries--transportation, skilled care, and other goods and services.
They can supervise their own employees and hire support during the
hours that are needed, rather than being held subject to agency hours
and restrictions. In addition, this program has been incredibly helpful
to those who struggle with getting appropriate care in their homes
either due to contracted agency employee absences or the general dearth
of HHA providers around the country, as noted in the President's April
2023 Executive Order, Increasing Access to High Quality Care and
Supporting Caregivers. Unfortunately, despite being created in 2008 and
demonstrating success since then, Veteran Directed is still not
available in every VA medical center. In many cases, VA staff are
unfamiliar with the program, even if it is supposedly available at the
facility, or the program exists in name only, without the appropriate
staff available to ensure its availability and success. For example,
Mary Ward, a Dole Caregiver Fellow, cares for her 100 percent service-
disabled veteran husband and 14-year ALS patient, Tom, who receives
care from the Durham VA Medical Center. Mary is an astute and effective
advocate for Tom. In 2019, once she found out another high-need veteran
in the area was enrolled in the Veteran Directed Program, she began the
process of trying to get Tom enrolled. However, over the intervening
years, she has been told repeatedly that the program was still
unavailable in Durham, a large VA medical center--again, even though
another veteran was already enrolled. Finally, after significant effort
on Mary's part and intervention from EDF, the VA reversed course and
Mary was told recently that the agency would try to enroll Mr. Ward in
an existing area of coverage for the Veteran Directed Program. If
enrolled, Mary will be able to hire her own home health and respite
care to ensure Tom's needs are met. This should not and cannot be this
difficult for veterans and caregivers.
As a result of situations like Mary and Tom's, Congresswoman
Brownley thankfully introduced the The Elizabeth Dole Home and
Community Based Services for Veterans and Caregivers Act. In
addition to mandating that every VA medical center provides the
Veteran Directed Program, the legislation, as modified in the
Senate, takes a holistic approach to ensuring this and other
GEC programs and services are offered and appropriately
staffed. It also attempts to ensure that caregivers have access
to information on available programs and services in a
centralized location and requires the coordination of other
available services if a caregiver is denied or discharged from
PCAFC for reasons other than waste, fraud, or abuse.
Most notably, the legislation increases the expenditure cap for
non-institutional care from 65 percent to 100 percent of the
cost of the closest VA Community Living Center (CLC). This
allows the most vulnerable veterans and caregivers the support
they need to stay in their homes, often leading to better
outcomes for the family. The removal of the cap would have
helped people like Dole Fellow Lara Garey from Austin, TX, who
cared for her 100 percent service-disabled veteran, Tom, until
his death in July 2022. Because of the mandated cap, Lara
constantly had to fight with the VA to get the appropriate
support in their home so Tom could continue to enjoy movie
nights with the family, opening gifts on Christmas morning,
attending concerts, and even being present for their son's high
school graduation--all of which he would have missed if he were
in a facility 2 hours away. It was Tom's greatest wish to
remain in their home and maintain as normal a life as possible
in such an abnormal situation. He wanted to be surrounded by
the peace and love of his family during the hardest of times.
He deserved that choice, and Lara fought every day until his
death to make that possible.
Rapid, Thoughtful Expansion of the Veteran Directed Respite
Pilot. As the VA works to improve support for veteran
caregivers of all generations, we would like to commend the
Caregiver Support Program for its efforts to dramatically
increase the use of traditional respite care for eligible
individuals by over 200 percent through the enactment of
``respite champions,'' VA employees whose job it is to support
access and coordinate services for those seeking to use respite
services. In addition, the VA has recently launched a pilot
program in 10 sites providing access to respite care through
the Veteran Directed program, allowing caregivers and veterans
the ability to hire their own respite services. This is
especially beneficial for those with specialized needs,
including severe mental health and cognitive disorders, as they
can hire and hire providers familiar to them during the hours
of their choosing.
Call to Action
Fortunately, many of the pieces of legislation mentioned above, the
Elizabeth Dole Home Care Act, the COPE Act, The Care Act of 2023, and
the Love Lives On Act were included in H.R. 8371, the Elizabeth Dole
21st Century Veterans Healthcare and Benefits Improvement Act. While
the passage of the original Elizabeth Dole Home Care Act is the top
priority for EDF, the overall package, to which Senator Dole was also
proud to lend her name, includes numerous additional provisions
designed to benefit veterans and caregivers including:
Enhanced access to care in the community for those for
whom it has been determined by their clinician to be in their medical
best interest.
Enhanced access to residential rehabilitation for
vulnerable veterans.
A long-awaited pilot program to assess the effectiveness
of and satisfaction with assisted living services, giving veterans and
caregivers options in their care.
Enhanced burial and education benefits for survivors.
Conclusion:
At the Elizabeth Dole Foundation, we focus on issues that directly
impact caregivers and issues of significant interest to them. Many of
the challenges outlined here and in the RAND report can be addressed
through continued oversight and the legislative initiatives mentioned
above. Specifically, the Senator Elizabeth Dole 21st Century Veterans
Healthcare and Benefits Improvement Act, which enjoys strong support
from all major veteran service organizations, would provide, in many
cases, immediate relief to those in need. We urge Members of the House
to reach out to trusted veteran, caregiver, and survivor advocacy
organizations to hear their perspective on this legislation and then
ensure its swift passage. Veterans and caregivers have been waiting for
2 years for Congress to take action on many of the provisions in the
bill, and they simply cannot wait any longer for its life-changing, and
likely life-saving provisions.
Thank you Mr. Chairman, and I look forward to your questions.
Prepared Statement of Vanessa Chism
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Prepared Statement of Troy Broussard
Chairman Bost, Ranking Member Takano, and members of the Committee,
thank you for inviting AARP to testify today. My name is Troy
Broussard, and I am the State Director for AARP Kentucky. AARP, which
advocates for the more than 100 million Americans age 50 and older,
including over 430,000 Kentuckians, appreciates the opportunity to
provide testimony at today's hearing about supporting the veteran
caregiver community. It is my distinct honor to also have the
opportunity to testify before my own Member of Congress, Representative
McGarvey. As a proud Army Desert Storm Veteran and someone who played a
pivotal role in leading AARP's National Veterans & Military Families
Initiative (VMF), I look forward to sharing with you AARP's work to
support our Nation's family caregivers, including those specifically
caring for our veterans and military families. They are indeed everyday
heroes.
AARP Supports Family Caregivers Broadly Including Military and Veteran
Caregivers
One of AARP's top priorities is supporting our Nation's more than
48 million family caregivers by providing them with resources and
tools, advocating for greater support for them at the Federal, State,
and local levels, providing resources to employers to support their
caregiving employees, conducting leading research on family caregiving,
and working with hospitals, health systems, and other stakeholders to
improve support for family caregivers. Family caregivers help older
adults, veterans, and people with disabilities live independently in
their homes instead of being forced into nursing homes. Family
caregivers need commonsense solutions that will save them time and
money and provide them with more support.
Every day, family caregivers assist their older parents, spouses,
siblings, grandparents, adult children, and other loved ones so they
can live independently in their homes--where they want to be. They help
with everything including meals, bathing, dressing, chores, medications
and medical care, finances, grocery shopping, transportation,
coordinating care across multiple providers and care settings,
advocating on their loved one's behalf, and much more.
Family caregivers are the backbone of a broken long-term care
system, providing $600 billion in unpaid labor annually, saving
taxpayers billions. Without them, America's health and long-term care
systems would collapse. Without family caregivers' support, many older
Americans would be forced into costly nursing homes with the government
and taxpayers paying the bill. Some family caregivers help a few hours
a month while others are on call 24 hours a day, 7 days a week. On
average, family caregivers provide almost 24 hours of care a week, and
thirty-two percent of family caregivers provide at least 21 hours of
care to their loved one each week. More than one in four family
caregivers (29 percent) provide care for 5+ years.
More than six in ten family caregivers (61 percent) work full-or
part-time. On average, they are working around 35 hours per week. The
time they spend caregiving can be the equivalent of another part-or
full-time job. Caregivers may choose to or have to make changes to
their work situation, given their caregiving responsibilities. Six in
ten family caregivers say they have experienced at least one impact or
change in their employment situation due to caregiving, with about half
going in late, leaving early, or taking time off to provide care.
Caregivers also cut back on hours, take a leave of absence, give up
working entirely, or retire early. These changes often impact income,
access to employer-sponsored benefits and retirement savings, which can
have long-term consequences.
Sandwich generation caregivers, caring for an older family member
or friend and raising children or grandchildren, are juggling even
more, often in addition to paid employment. Sandwich generation
caregivers are generally ages 35-64 (increasingly including Gen Z and
millennial caregivers) and are more likely than other caregivers to be
working while caregiving. They also report being more emotionally and
financially strained. A sandwich generation caregiver could be an adult
son or daughter caring for a parent who is a veteran while also caring
for children or a parent caring for an adult child who is a veteran and
an older relative.
Family caregivers often spend time searching for resources,
information, support, and services for the person they are assisting or
themselves as a caregiver. Over half (56 percent) of family caregivers
advocate with care providers, community services, or government
agencies on behalf of their loved one. One in four want help figuring
out forms, paperwork, and eligibility for services. Among those
coordinating care, 31 percent find it difficult to do so. Terri in
Indiana cares for her husband, who served in the Air Force. She has
used some of AARP's caregiving resources and she also receives some
important support from the Department of Veterans Affairs (VA),
including the VA paying Terri to take care of her husband and having a
ramp installed on the house to accommodate a wheelchair. The ramp was
also covered through the VA. At the same time, she also faces
challenges, such as health care providers being dismissive and not
appropriately communicating with her about her husband's care.
Nearly six in ten caregivers (58 percent) assist with medical/
nursing tasks, such as injections, tube feedings, wound care, operating
equipment, and more. African American/Black and Hispanic/Latino
caregivers more often help with medical/nursing tasks than do white
caregivers, and caregivers of spouses/partners more often assist with
such tasks than all other caregivers. It is important to note that
veterans may experience unique physical and/or mental health
challenges, given their service, which can be even more complicated and
challenging to address. Too often, family caregivers do not receive the
education and training they need to assist them in performing medical/
nursing tasks. AARP has worked with others to conduct research
specifically around family caregivers performing medical/nursing tasks.
Family caregivers also face financial challenges. More than three
in four family caregivers (78 percent) are incurring out-of-pocket
costs due to caregiving. Caregiving is costly both in terms of out-of-
pocket expenses paid to assist their loved ones and potential income
and retirement savings foregone. An AARP report found that family
caregivers spend, on average, 26 percent of their income on caregiving
expenses or over $7,200 annually. The 26 percent is a measure of
financial strain. The financial strain is higher for African American/
Black and Hispanic/Latino family caregivers who spend, on average, 34
and 47 percent, respectively, of their income on caregiving expenses
annually. AARP Research has found that family and others who provide
care for veterans spend on average $11,500 of their personal income on
out-of-pocket costs related to caregiving each year, more than fifty
percent higher than for family caregivers overall. The support provided
by caregivers also helps save taxpayer dollars by assisting in delaying
or preventing expensive nursing home care and unnecessary hospital
stays. Nearly half of family caregivers have experienced at least one
financial setback due to caregiving, such as using their personal
savings, cutting their own healthcare expenditures, or reducing
retirement savings. The out-of-pocket expenses that many family
caregivers incur are on top of the financial impacts that can occur due
to reducing hours or leaving paid employment entirely.
AARP's Leadership to Support Our Nation's Family Caregivers, Including
Military Veteran Caregivers
AARP has long worked to support our Nation's family caregivers
through our advocacy, resources and tools for caregivers, research,
work with employers, and more. Our goal is to help shine a spotlight on
family caregiving and bring about the changes needed to support family
caregivers in the public and private sectors.
Resources
AARP is dedicated to providing resources, information, and tools to
support our Nation's active duty, veterans, and their family
caregivers. Physical, emotional, and financial challenges face
caregivers broadly. At the same time, caregivers of veterans may also
face unique or different challenges than civilian caregivers. Family
caregivers of veterans face higher out-of-pocket costs than civilian
caregivers, on average, as previously noted. Caregivers may also face
unique challenges in caring for a veteran affected by the wounds of
war, and who may have unique or more complex physical, emotional, or
mental challenges. Veteran caregivers may provide care earlier and
longer than other caregivers, often due to service-related injuries.
Military caregivers consistently experience worse health outcomes,
greater strains in family relationships, and more workplace problems
than non-caregivers.
Care options and available resources can be different for
caregivers of veterans, including the availability of the VA Caregiver
Support Program. Caregivers of veterans can have access to some
resources and support not available to civilian family caregivers. It
is important that caregivers of veterans have access to the benefits
for which they are eligible. As with civilian caregivers, spouses,
parents, siblings, children under age 18, other relatives, friends, and
neighbors can take on an array of tasks to assist a veteran in living
independently. AARP joined the Elizabeth Dole Foundation, Wounded
Warrior Project, and others as a member of the Hidden Helpers Coalition
regarding support and services for military caregiver kids and youth.
AARP cosponsored the documentary, Sky Blossom: Diaries of the Next
Greatest Generation, about teens and twenty-somethings caring for a
veteran parent or grandparent.
AARP has developed specific resources for military and veteran
caregivers. These resources can be accessed through AARP's Veterans,
Active Duty, and Military Families page (www.aarp.org/veterans) and
AARP's Family Caregiver Resource Center. Resources AARP provides for
caregivers of veterans include:
Military Caregiving Guide for Veterans, Service Members
and Their Families from AARP and the Elizabeth Dole Foundation-this
includes information, a glossary of terms to know, resources, and
checklists to help the caregiver organize and find the support they
might need. The guide outlines five key areas that family caregivers
face.
AARP Financial Workbook for Veteran and Military Family
Caregivers-this is a practical guide focused on health, housing, and
money management to help a caregiver get organized. Each set of
worksheets is designed for the caregiver to capture the essential
information they need to manage the complex responsibilities of
caregiving.
Mental Health and Emotional Support Guide for Veteran and
Military Family Caregivers from AARP and the Elizabeth Dole Foundation-
this guide includes five self-care tips, warning signs of a mental
health crisis, and resources and support.
Veterans and Military Families Health Benefits Navigator
(also available to print here)-this is a tool to help veterans and
their family members find and obtain service-related health benefits.
The navigator can help you to learn more about health benefits provided
through the VA and Department of Defense (DoD); understand how to apply
for VA or other Federal health care programs; and identify how to get
free help from certified representatives who have experience and
knowledge of the VA's process for awarding benefits.
Veterans Home Modification Benefits Guide-this guide
helps to connect veterans and military families with financial
assistance programs to modify their homes.
These and other free handbooks on an array of issues are also
available here. The Elizabeth Dole Foundation, AARP, and the Chamber of
Commerce Foundation's Hiring Our Heroes Program has also developed
``Supporting Military and Veteran Caregivers in the Workplace: A
Practical Guide for Employers'' as a resource to support military and
veteran employees and help shape policies and procedures that focus on
supporting military and veteran employees. We have also worked to share
information about the PACT Act. For example, in July 2023, AARP hosted
a nationwide PACT Act Tele-Town Hall on expanded health care benefits
and services available to veterans and their families from the VA under
the law. AARP developed this short document about benefits available
under the PACT Act.
AARP works on the national, State, and local levels to provide
resources to military and veteran caregivers. AARP Kentucky is working
closely with the Kentucky Department of Veterans Affairs (KDVA)
supporting and sharing Military Caregiving resources at a recent Women
veterans resource event. AARP Kentucky staff and volunteers shared
resources that included a specific Military Caregiving guide that
provides step-by-step instructions on how to prepare to become a
successful caregiver to a veteran.
AARP established a Veterans Fraud Center to learn more about the
latest scams targeting the military community. Veterans, active-duty
service members, and their families are nearly 40 percent more likely
than civilians to lose money to scams and fraud. AARP has an AARP
Watchdog Alert Handbook: Veterans Edition to find out more about the
common scams and schemes con artists use to steal money and personal
identities from veterans, service members, and their families and how
to stay safe. Veterans and their families can report a scam or fraud to
AARP's Fraud Watch Network online or at 1-877-908-3360 Monday through
Friday 8 am - 8 pm EST to help warn others. Operation Protect Veterans
is a joint program of AARP's Fraud Watch Network and the U.S. Postal
Inspection Service (USPIS). The initiative provides free resources and
community programs to proactively spot scams and deliver helpful
guidance from fraud specialists if you have been targeted.
For family caregivers broadly (including military and veteran
caregivers), AARP has a wide variety of articles, tips, tools, guides,
and more to assist family caregivers with their caregiving
responsibilities and help with self-care. Caregivers can access these
resources in our Family Caregiver Resource Center (www.aarp.org/
caregiving or www.aarp.org/cuidar).
We also have a toll-free family caregiving resource line that can
suggest resources for caregivers on a variety of topics. The resource
line, 1-877-333-5885, is available Monday through Friday from 8 am to 8
pm EST. It is also available in Spanish at 1-888-971-2013.
Members of the Home Alone Alliance-a collaborative of AARP,
developed more than 50 instructional videos on common complex care
tasks specifically created for family caregivers. The videos are free
of charge, and many are available in multiple languages. The VA was
involved in the development of the series of videos on mobility.
Several VA hospitals currently use them as a resource for caregivers
prior to discharge. We also work with hospitals and health system
leaders to better recognize and support family caregivers. Efforts
include a series focused on promising practices for systems seeking to
be more inclusive of family caregivers and the development of a Family
Caregiver Program Guide designed in collaboration with Chief Nurse
Officers, that focused on helping system and clinical leaders execute
policy and practice changes to better meet the needs of patients, their
families, and the clinicians and social service providers who care for
them.
Research
AARP has been working on leading research on family caregiving for
years. Below are some key examples:
Valuing the Invaluable 2023 Update: Strengthening Supports for
Family Caregivers-This report includes State specific data on the
number of family caregivers, the value of the unpaid labor they
provide, and more. This report pulls from multiple sources to profile
who family caregivers are and the challenges they face and includes
several first-person accounts of the experience. It takes a detailed
look at recent developments and promising Federal and State policies
that support family caregivers, as well as promising practices in the
public and private sectors, including the positive representation of
caregivers in popular media. It concludes with specific
recommendations.
Family Caregiver Considerations for the Future of Hospital at Home
Programs-The Hospital at Home (HaH) model shifts care into the home
setting and delivers acute hospital-level care to eligible patients
where they live instead of in a hospital. This means that family
caregivers may end up providing increased assistance to the HaH patient
with activities of daily living and handling household chores (e.g.,
cleaning, laundry). This brief presents four detailed Family Caregiver
Considerations that HaH models can incorporate into policy and program
design to best support patients and family caregivers.
Caregiving in the US 2020- This is a national report on family
caregivers conducted by AARP and the National Alliance for Caregiving
about every 5 years. In addition to the full report, there is an
executive summary, profiles of different ``typical'' caregivers, an
infographic and more. This provides an important overview of family
caregivers in the US.
Home Alone Revisited: Family Caregivers Providing Complex Care-
This study builds on the landmark Home Alone study, which was the first
national look at how family caregivers are managing medical/nursing
tasks, such as managing medications, changing dressings, and other
tasks in the home setting, that are typically performed by trained
professionals in hospitals. Home Alone Revisited affirms many of the
findings of the original 2012 study and adds new information about
targeted issues.
A Closer Look at Sandwich Generation Caregivers of Medicare
Beneficiaries-Early research has shown the negative impact the
compounded responsibility of caring for an older adult while still
caring for young children can have on caregivers' physical health,
well-being, and financial welfare. This report uses qualitative and
quantitative data to depict sandwich generation caregivers to Medicare
beneficiaries and the care they provide. Today, the combined dynamics
of Americans delaying having children and younger generations taking on
caregiving for older adults are leading to a new picture of what it
means to be sandwiched between two generations who need daily care.
2023 State Scorecard on Long-Term Services and Supports (LTSS) for
Older Adults, People with Physical Disabilities, and Family Caregivers
(Scorecard)-The Scorecard compares State LTSS systems across multiple
dimensions of performance, reflecting the importance and
interconnectedness each has on the overall LTSS system. Support for
Family Caregivers is one of five dimensions across which states are
measured. States that do well supporting family caregivers tend to have
stronger overall LTSS systems; the scores and ranks of the Support for
Family Caregivers dimension showed the highest correlation out of all
five dimensions to overall State LTSS system performance.
US Voters' Views on Support for Family Caregiving-According to this
AARP poll, voters across the country want Congress to address family
caregiving issues. This is especially true for those age 50 and older:
over two-thirds of voters, and 75 percent of voters 50+, say it is very
important for Congress to help seniors live in their own homes. More
than half (57 percent) say the same for supporting unpaid family
caregivers. An overwhelming majority of voters, 78 percent, are either
a current, past, or future family caregiver. Over 70 percent of voters
across the political spectrum say they would be more likely to support
a candidate who backed proposals to support family caregivers, such as
a tax credit, paid family leave, and more support and respite services.
Advocacy
In Congress, AARP has worked with the bipartisan, bicameral
Assisting Caregivers Today (ACT) Caucus co-chaired by Representatives
Jen Kiggans (R-VA) and Debbie Dingell (D-MI) and Senators Michael
Bennet (D-CO) and Shelley Moore Capito (R-WV), to help shine a
spotlight on family caregivers. The ACT Caucus raises awareness about
the challenges facing family caregivers and advocates for policies that
support them. We are also working to advance bipartisan legislation to
improve support for and provide financial relief for family caregivers,
including caregivers of veterans, including:
Elizabeth Dole Home-and Community-Based Services for
Veterans and Caregivers Act (H.R. 542) to expand access to current VA
programs providing care at home and provide for improved coordination
among VA's home-and community-based services and with the Program for
All-Inclusive Care for the Elderly (PACE). The bill also improves
transitions and access to services for veterans and family caregivers
denied or discharged from the VA Program of Comprehensive Assistance
for Family Caregivers (PCAFC), creates a centralized website for VA's
caregiving resources, and increases respite care for veteran and
military caregivers;
Caregiver Outreach and Program Enhancement (COPE) Act
(H.R. 3581) to establish a grant program to award funding to
organizations that support the mental health and well-being of veteran
and military caregivers enrolled in the VA's PCAFC. The bill also
requires the VA and Government Accountability Office to provide
Congress with a report on the mental health of veteran and military
caregivers, the availability and accessibility of mental health
treatment for veteran and military caregivers, and information on the
grant program and its outcomes;
Expanding Veterans' Options for Long-Term Care Act (H.R.
1815) to establish a 3-year pilot program to assess the effectiveness
of providing assisted living services to eligible veterans;
Autonomy for Disabled Veterans Act (H.R. 2818) to
increase the amounts available under the VA's Home Improvement and
Structural Alterations (HISA) Grant program to $10,000 for veterans
with a service-connected disability and $5,000 for veterans with a
disability that is not service-connected. The legislation would allow
veterans to make necessary adaptations for wheelchairs, medical
equipment, and to improve accessibility throughout the veteran's home
to help them remain at home;
Veterans Protection from Fraud Act (H.R. 3956) to enhance
penalties to help prevent fraud against our Nation's veterans and their
families;
Supporting Access to Falls Education and prevention and
Strengthening Training Efforts and Promoting Safety initiatives (SAFE
STEPS) for Veterans Act (H.R. 9179) to prevent falls among veterans by
establishing an Office of Falls Prevention in the VA, establishing a
public education campaign, developing research on falls prevention
programs for veterans, helping to ensure safe patient handling and
mobility policies, and more;
Credit for Caring Act (H.R. 7165) to provide a non-
refundable tax credit of up to $5,000 for eligible working family
caregivers to offset some of the out-of-pocket costs of caring for a
loved one;
Alleviating Barriers for Caregivers Act (H.R. 8018) to
reduce red tape for family caregivers in Medicare, Medicaid, Social
Security programs, and the Children's Health Insurance Program;
Lowering Costs for Caregivers Act (H.R. 7222) to allow a
family caregiver with a health savings account, flexible spending
account, health reimbursement account, or Archer medical savings
account to use funds in those accounts for the qualified medical
expenses of parents or parents-in-law; and
Connecting Caregivers to Medicare Act (H.R. 7274) to help
inform people about Medicare's voluntary option for Medicare
beneficiaries to allow family caregivers to access their health
information through 1-800-MEDICARE. This can make it easier for
caregivers to communicate with Medicare to help their loved one or to
advocate on their behalf.
Among the supporters of the Credit for Caring Act, Alleviating
Barriers for Caregivers Act, and the Connecting Caregivers to Medicare
Act are the Elizabeth Dole Foundation and Paralyzed Veterans of
America. Other Veterans and Military service and support organizations
have also shown previous support for a family caregiver tax credit.
States across the country are also working to support family
caregivers. In 2023 and 2024, AARP Oklahoma and AARP Nebraska
successfully advocated for a tax credit for family caregivers in their
states to assist with out-of-pocket costs. While both states capped
their tax credits at $2,000 for most caregivers, they also established
a higher maximum credit - $3,000 - for family caregivers who take care
of a veteran.
This year, AARP Maryland was instrumental in creating a Caregiver
Expense Grant Program that will allow eligible family caregivers to
apply for grants of up to $2,500 a year to cover expenses related to
caring for someone 60 or older, and AARP Connecticut expanded its
state's paid leave law to cover nearly all private sector employees.
The new law broadens the range of family members for whom an employee
may use leave, increases the rate at which employees accrue leave, and
allows employees to use leave in more situations, including closures
due to a public health emergency. Finally, in my home State of
Kentucky, AARP successfully passed legislation to increase access to
home care in Medicaid, an increase in funding for senior meals and
numerous other provisions that will positively impact veterans and
their caregivers.
Conclusion
Thank you for your attention to the important issue of supporting
veteran family caregivers. They help veterans live in their homes and
communities. Family caregivers and military and veteran caregivers need
and deserve our support and commonsense solutions that meet their
needs. AARP is proud to support our Nation's military and veteran
family caregivers through advocacy, resources, and research.
Prepared Statement of Jonathan Pruden
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Statements for the Record
----------
Prepared Statement of Veterans of Foreign Wars of the United States
Chairman Bost, Ranking Member Takano, and members of the committee,
on behalf of the men and women of the Veterans of Foreign Wars of the
United States (VFW) and its Auxiliary, thank you for the opportunity to
provide our comments on this important topic.
As a grateful nation, our mission is to support those who have
defended our freedoms but how are we supporting the caregivers who have
dedicated their lives to caring for our Nation's veterans? The
Department of Veterans Affairs has come a long way in the services it
provides to support the care of our Nation's veterans but there is
still more work to be done. Caregivers make up a variety of people from
spouses to children, parents, and even neighbors who work tirelessly to
ensure that veterans have the best quality of life. Veterans who
require caregivers are not only part of the aging population of 65
years and older but also include Post 9/11 veterans with critical
injuries like Traumatic Brain Injury (TBI), Post Traumatic Stress
Disorder (PTSD), gunshot wounds, amputations, spinal cord injuries,
etc.
Background
Prior to 2010, the VA had an informal caregiver program. Caregivers
assisting veterans who served prior to 9/11 tend to resemble civilian
caregivers where they relied on local programs to assist. Informal
caregiver training and resources including family caregivers of
veterans were eligible for VA counseling and mental health services,
and reimbursed attendants for travel expenses related to authorized VA
treatment for the veteran were available by the VA. However, there was
no dedicated program to address the unique needs of the veterans. When
the veterans were unable to care for their daily needs, decisions were
made by caregivers to ensure that their loved one would not be
institutionalized. However, this resulted in emotional, financial, and
physical strain on caregivers that led to burnout.
It was in March 2007 when President George W. Bush established the
President's Commission on Care for America's Returning Wounded
Warriors, which was tasked with providing a comprehensive review of the
care provided to injured military personnel returning from the wars in
Afghanistan (Operation Enduring Freedom/OEF) and Iraq (Operation Iraqi
Freedom/OIF). The Commission resulted in six recommendations: (1).
Modernizing and improving the disability and compensation systems; (2).
Aggressively preventing and treating post-traumatic stress disorder and
traumatic brain injury; (3). Significantly strengthening support for
families; (4). Immediately creating comprehensive recovery plans to
provide the right care and support at the right time in the right
place; (5). Rapidly transferring patient information between the
Departments of Defense (DoD) and Veterans Affairs (VA); and (6).
Strongly supporting Walter Reed by recruiting and retaining first-rate
professionals through 2011. Through these recommendations, the
President was able to get a 77 percent budget increase to support
veterans' healthcare.
In May 2010, Congress passed the VFW-supported Caregivers and
Veterans Omnibus Health Services Act of 2010 requiring that VA
establish a range of new services to support caregivers of eligible
Post 9/11 veterans. There were strict guidelines to eligibility
requirements, 86 percent of the veterans who are enrolled in the
caregiver program have a service-connected disability rating of 70
percent or higher. A veteran must have incurred or aggravated a serious
injury while serving in the military on or after Sept. 11, 2001. Due to
the serious injury, the veteran must also now require assistance with
the management of their personal care and functions involved in daily
life. This assistance must be needed for a minimum of six continuous
months based on a clinical decision, and then receive continuous care
from a Patient Aligned Care Team or another VA health care team which
is in the best interest of the veteran. The veteran must also agree to
receive ongoing care at home by the designated family caregiver, and
those services provided by the caregiver may not be provided by any
other individual or entity. The payment structure was based on a 3-tier
system which was determined by how many hours of care a week were
needed based on the clinical decision.
To comply with this legislation, VA created two new caregiver
programs. The first, the Program of General Caregiver Support Services
(PGCSS) established peer support mentoring, skills training, coaching,
telephone support, online programs, and referrals to available
resources to caregivers of veterans. The second, the Program of
Comprehensive Assistance for Family Caregivers (PCAFC) expanded
benefits and services to include a Caregiver Support Line, a monthly
stipend, health care coverage, legal and financial planning services,
and travel expenses. However, members of VFW, some of whom were from
World War II, the Korean War, the Vietnam War, the Gulf War, and
various other conflicts, expressed concerns that there was no
justifiable reason to exclude otherwise deserving veterans from program
eligibility simply based on the era in which they served.
After the push for veterans of all eras to participate in the PCAFC
and as a part of the VA MISSION Act of 2018, the PCAFC was then
expanded to veterans of all eras. In July 2020, VA published the final
rule for the caregiver expansion program after a 16-month delay. The
first phase of the expansion was implemented in Oct. 2020, adding
veterans who served after May 7, 1975, and before Sept. 11, 2001.
However, eligibility criteria requirements for acceptance into the
caregiver program became rigorous. VA's definition of a serious injury
for participation in the caregiver program as, ``any injury, including
traumatic brain injury, psychological trauma, or other mental disorder,
incurred or aggravated in the line of duty in the active military,
naval, or air service on or after September 11, 2001, that renders the
veteran or service member in need of personal care services.'' That
definition was critical because it did not successfully define the
inclusion of those who need the assistance of a caregiver due to
debilitating illnesses that render a veteran unable to perform
activities of daily living without the assistance of a caregiver, such
as Parkinson's Disease and Amyotrophic Lateral Sclerosis (ALS). While
VA has never considered non-mental health illnesses when determining
eligibility for the caregiver program, the Department of Defense's
Special Compensation for Assistance with Activities of Daily Living
(SCAADL) program did.
In fall 2021, VA officials announced they would review all
``legacy'' participants--individuals admitted before October 2020--to
ensure they still met the criteria for participation. At the time, it
was estimated that about one-third of the nearly 20,000 legacy
participants could be dropped from the program because of eligibility
changes. These issues have led to VA implementing a moratorium on
involuntary revocations from the program until VA was able to analyze
the thousands of recent revocations to determine if veterans are being
erroneously removed from the program.
While the VFW certainly agrees that veterans who have recovered
from injuries and illnesses should be put on a path to achieve
independent living and no longer require the assistance of a caregiver,
such decisions must be made when the veteran and the caregiver agree
and not by VA employees who lack the proper training and medical
expertise to make such decisions. When a decision is made to graduate a
veteran from the caregiver program, VA must ensure veterans and their
caregivers are given the training and resources, such as employment
training and independent living counseling, to ensure veterans can
properly transition from needing a caregiver to performing activities
of daily living without the assistance of others.
On September 21, 2022, VA issued an interim final rule by extending
eligibility for legacy participants, legacy applicants, and their
Family Caregivers, and the applicable benefits afforded to such Family
Caregivers, to include the monthly stipend, by 3 years. In Oct. 2022,
the second phase of the implementation expanded the PCAFC program to
all veterans leading to more than 74,000 veteran caregivers in Fiscal
Year 2023. VA's Caregiver Annual 2023 Report indicated that 98 percent
of PCAFC applications were processed within 90 days or less. The
Caregiver Support line has received more than 150,000 calls, with the
top three reasons being appeals, application status, and referrals. The
national training curriculum has been provided in multiple languages
and the approximately 2500 Caregiver Support Staff are receiving
training to provide the adequate assistance and support needed to
assist the caregiver.
Economic and Personal Hardships of Caregivers
Parents and children of veterans are impacted in many ways when
they become caregivers. Parents raise their children to become
independent with the goal of the child caring for the parent's during
their aging years but when a life-altering injury or illness occurs
unexpected things happen. Sometimes these older parents have a
difficult time caring for themselves and it becomes an emotional strain
and burden on them to accept the role of caregiver to their child.
Challenges that caregivers face are managing their time, lack of
privacy, sleep deprivation, depression and isolation, and being afraid
to ask for help. Children of veterans who suffer from an injury or
illness may have to go through the process of growing up too soon by
helping more around the house, some have a hard time understanding the
significance of the injury or illness and the impact it has on them,
and not having that emotional connection they yearn for as they are
figuring out who they are in this world. Family and individual mental
health services offer the support caregivers need, as they travel the
road to recovery or a sense of normalcy.
The economic hardships that veterans, their families, and
caregivers face is substantial; families sacrifice a lot when a veteran
is disabled and needs care and supervision. Often, the spouse, child,
parent, or family friend must quit their job to meet the need. This
sacrifice leaves a hole in the financial picture of the family. The
Caregiver stipend should be increased to offset this sacrifice. Also,
when a caregiver stops their outside employment, there is no
contribution to Social Security, which is concerning for the caregiver.
38 CFR 71.40 (c)(4)(1) and (2) report that the stipend amount for the
PCAFC provides two levels of benefit. The VA approved Primary Caregiver
for the veteran can receive a monthly stipend which is calculated by
multiplying the monthly stipend rate by 0.625 and if the VA determines
that the eligible veteran is unable to self-sustain in the community,
the Primary Caregiver stipend would be calculated by multiplying the
monthly stipend rate by 1.00. These caregivers are taking the place of
a VA services and should be compensated as such.
Current VA Programs
The VA Caregiver Program is a critical service provided to veterans
and their families. For veterans, their families, caregivers, and
future enrollees, the VA Caregiver Support Programs are critical.
Improvements are necessary for the Caregiver programs to include
Respite Services, Non-primary Caregiver Employment Support, and
Modernization and Standardization of the systems used to process and
adjudicate Caregiver Claims including Notification Letters. Caregivers
are often on duty for 24 hours a day, the mental strain of caring for a
loved one is complex and overwhelming at times and can lead to
depression and burnout. The PCAFC provides respite services and CHAMPVA
coverage. CHAMPVA is a cost-share program and is not insurance
coverage. We know that an individual's mental health has a direct
correlation to an individual's physical health. Respite services, if
approved, are authorized up to 30 days of care in a calendar year and
must be arranged in advance. The current types of Respite Care offered
are: 1 visit of 30 days in a Community Living Center (VA Nursing Home);
10 short stays of 3 days each; or you may have a Home Health Aide come
to your home and stay for up to 6 hours in a row, day or night, with
each of these visits counting as 1 day. Families can divide their
approved respite care among the different types of Respite Care. When
listening to the concerns of Caregivers the 30-day limitation for
respite services does not adequately allow for unpredicted illnesses or
emergencies that may arise that could impact their ability to complete
their roles as a caregiver.
VA approved Non-Primary Caregivers for veterans have limited
protection if they must miss work to step in for the Primary Caregiver.
There is no protection of their employment or financial offset when
they do leave or miss work to provide this service. Providing
employment protection to Non-Primary Caregivers under PCAFC would
additionally relieve the mental burden and concerns of financial
insecurity of those Non-Primary Caregivers, who do not receive all the
same benefits that the Primary Caregivers receive under PCAFC.
Unlike the process that the Veterans Benefits Administration (VBA)
has in place to process Disability Claims, Appeals, and other benefits
administered under the Department of Veterans Affairs; the Caregiver
Applications and Appeals process is administered under the Veterans
Health Administration and does not provide the ability for Veterans
Service Organizations and Accredited Representatives to follow these
claims through the adjudication process, as seen in the VBA systems.
The PCAFC claims are received and processed at the local VA Medical
Centers, which lack standardization and oversight like compensation
claims. Inconsistency in adjudicating these claims and processing
notifications of decisions is causing undue mental and financial burden
on these veterans, families, and caregivers. Much like the VA
Disability Claims and Appeals letters sent to notify veterans of rating
decisions, the Caregiver Notification letters are intended to
communicate crucial information about the veteran's caregiver status,
required process, and benefits within the program. However, the
complexity of these letters often makes it difficult for the veteran to
comprehend the status details and implications if further information
or action is required.
The VFW and the Veterans Service Organizations (VSO) community
advocated for the simplification of decision notices, as well as
standardized verbiage when recognizing the service of the caregivers
and the loss of the veteran. It is understood that all the complex
legal language is required to be included but recognition of service,
and condolences should be upfront and not lacking compassion. Some
letters that caregivers or veterans have received do not even include
condolences for the loss and are straight to the benefits decision.
Many decision letters do not provide adequate information for veterans,
families, or caregivers to determine why the claim for caregiver status
was declined. Some will come with a one-sentence explanation with no
direct ``why'' which leaves even VSOs and accredited service officers
guessing on how to proceed. And finally, standardization of the veteran
eligibility process should be done as well. 38 CFR 71.20 reports
veteran eligibility criteria for the PCAFC program. This regulation
reports that for an individual to be eligible they must have had a
serious injury incurred or aggravated by service, and VA defines
serious injury as a 70 percent VA rating or a combination of 70 percent
for disability, and they must be in need of personal care services for
a minimum of six continuous months based on any ONE of the following:
an inability to perform an activity of daily living (ADL); or a need
for supervision, protection, or instruction. VA defines the inability
to perform ADLs as a veteran or service member who requires personal
care services each time he/she completes one or more of the following:
dressing/undressing, bathing, grooming oneself in order to keep oneself
clean and presentable, adjusting any special prosthetic or orthopedic
appliance, that because of the disability, cannot be done without
assistance, toileting, feeding oneself due to loss of coordination of
upper extremities, extreme weakness, inability to swallow or the need
for non-oral means of nutrition or mobility. The inability to self-
sustain in the community is defined by VA as the veteran requiring
personal care services each time, he/she completes three or more of the
seven activities of daily living listed above and is fully dependent on
a caregiver to complete ADLs or has a need for supervision, protection
or instruction. These criteria set for ADLs are clearly defined yet the
inability to self-sustain in the community based on supervision,
protection, or instruction is not defined at all.
VFW Recommendations
The role of the caregiver is crucial to ensuring that veterans have
the dignity of staying in their own homes while receiving care. We have
listed some possible solutions that could further support the work and
great service caregivers provide.
(1). Congress should increase the stipend amount while providing
coverage for Social Security points.
(2). Recognizing that the role of a caregiver is highly stressful
and VA should provide more comprehensive insurance coverage for the
caregivers, providing for physical and mental health coverage.
(3). Increase the number of respite days or allow a flex increase
for those emergency or unpredictable situations that may arise. This
will assist with the burden of care and help to improve the mental
health of caregivers.
(4). Provide employment protection services to approved Non-Primary
Caregivers to help reduce financial burdens. This would help increase
mental health and economic stability.
(5). Standardize the caregiver program to include letters, along
with modernizing the digital access of the PCAFC adjudication process
like those that are accessible to VSOs through VBA.
(6). Define the eligibility criteria for supervision, protection,
or instruction, as it is not well defined. Also, standardize the
implementation of the criteria as it should be standard practice,
nationally.
The VFW urges Congress and VA to be mindful of the sacrifices that
families, friends, children, etc. selflessly accept to care for and
support our Nation's veterans. The PCAFC provides a robust number of
services that our caregivers greatly need and improving these services
will allow for a greater quality of care. The VFW strongly urges
Congress to pass H.R. 8371, The Senator Elizabeth Dole 21st Century
Veterans Healthcare and Benefits Improvement Act, which would enhance
and reform the delivery of services at the VA by prioritizing veterans,
their families, their caregivers, and their survivors. This bill would
increase of expenditure cap for non-institutional care alternatives to
nursing home care. It would authorize the Secretary to enter into
agreements with Aging and Disability Resource Centers, area agencies on
aging, or State agencies, as well as centers for independent living,
Indian Tribes or Tribal organizations. It would also provide
coordination with assistance and support services for caregivers, and
provide a centralized website to access information and provide
improvements to the Homemaker and Home Health aide program. These are
critical improvements the program needs, and caregivers have waited
long enough, and should not have to wait for another Congress to
provide this help.
Chairman Bost, Ranking Member Takano, this concludes my statement.
Again, thank you for the opportunity to offer our comments on this
issue to the committee.
Information Required by Rule XI2(g)(4) of the House of Representatives
Pursuant to Rule XI2(g)(4) of the House of Representatives, the VFW has
not received any Federal grants in Fiscal Year 2024, nor has it
received any Federal grants in the two previous Fiscal Years.
The VFW has not received payments or contracts from any foreign
governments in the current year or the preceding two calendar years.
Prepared Statement of Paralyzed Veterans of America
Chairman Bost, Ranking Member Takano, and members of the committee,
Paralyzed Veterans of America (PVA), would like to thank you for the
opportunity to submit our views on the Department of Veterans Affairs'
(VA) Caregiver Support Program. PVA members uniquely understand the
value of caregiver support. While the VA provides essential health care
services to severely disabled veterans, it is their caregivers that
provide the day to day services needed to sustain their well-being.
Caregivers are often the most important component of rehabilitation and
maintenance for veterans with catastrophic disabilities because their
welfare directly affects the quality of care veterans receive.
Affect of Funding Deficiencies in VA Health Care on Caregivers
In June, PVA warned this committee that VA's Spinal Cord Injury and
Disorder (SCI/D) system of care was not sufficiently funded to properly
care for all of the SCI/D veterans on the department's registry.
Veterans are not the only ones who suffer when health care services are
unavailable or even eliminated. Often, their caregivers are forced to
fill the gaps that result when critical services such as inpatient
respite are eliminated or unavailable.
Staffing levels for the SCI/D system of care are detailed in
Veterans Health Administration (VHA) Directive 1176, which was last
amended on February 7, 2020. PVA strongly believes in each of the
requirements outlined in this directive because they are based on the
level of care needed to maintain the health and well-being of veterans
with SCI/D.
For months, our staff in the field have been telling us critically
needed positions at SCI/D centers were going unfilled. Now, essential
positions across VHA are being ``lost'' due to an inability to recruit
for them or even ``abolished.'' Specifically, many vacant positions in
social work, nursing, and several therapy disciplines have been
eliminated. Additionally, when medical staff leave, their vacated
positions are often not being back filled causing strain on the system
and ultimately denying veterans access to earned health care services.
Eligible veterans are entitled to up to 30 days of respite care
services per calendar year. These hours can be utilized for in-home
care, depending on the family's preference and the veteran's needs.
Normally, veterans with SCI/D are placed in one of VA's acute or long-
term care SCI/D centers to accomplish this. But in many parts of the
country, insufficient funding coupled with the elimination of staff
positions and unfilled vacancies has severely limited the availability
of respite care.
Earlier this year, the husband of PVA's National Senior Vice
President needed back surgery. Our Senior Vice President is a
quadriplegic and her husband is her primary caregiver. Despite the fact
they live close to one of VA's larger SCI/D centers, VA was unable to
provide respite prior to his surgery. A friend stepped in to help for a
few days, but as soon as he was released from the hospital, her husband
had to forego his own recovery and resume caring for her. In this
instance, and in many others, VA is failing in one of its very basic
obligations to SCI/D veterans. Something is very wrong here and we urge
this committee to get to the bottom of it quickly.
Role of the VA's Program of Comprehensive Assistance for Family
Caregivers (PCAFC)
VA's PCAFC is unique in that it is the only integrated program that
provides caregivers with health insurance, a stipend, travel expenses,
mental health care, respite care, and injury specific training. Without
these support services the quality of care provided by the caregiver is
likely to be compromised and the veteran is more likely to experience
frequent medical complications and require long-term institutional
care. Veterans who access PCAFC are medically stable enough to live
outside an institution, but lack the functionality to care for
themselves on an ongoing basis.
Despite having been established nearly 15 years ago, executing the
program continues to be challenging for the VA. As of August 5, 2024,
the VA reported having 13,881 applications in process, but the
department is no longer reporting the number of approved applications.
Instead, they are reporting the percentage of approvals from the
Veterans Integrated Services Network (VISN). Without being able to
track the number of applications approved in comparison to the number
of pending applications it is difficult to keep track of their
progress.
Recently, we learned that other specialty care areas, including
VA's PCAFC, are also suffering with staffing shortages. PCAFC vacancies
cannot be filled because they were not previously identified as
``critical,'' and we understand that more than 125 of them have been
eliminated. Now more than ever, it is important that Congress
understand the important correlation between PCAFC, the SCI/D system,
and the impact that understaffing due to funding deficiencies has on
them.
Reforming VA's PCAFC to Better Serve Veterans and Their Caregivers
VHA is working on a rulemaking to make changes to the current
caregiver regulation and an announcement about those proposals was
expected months ago. PVA joined 11 other advocacy groups in a letter to
the President last month pressing the White House to release proposed
changes to the PCAFC. While we wait for the proposed rule, we would
like to highlight several concerns that consistently pose challenges
for our members in accessing and benefiting from this critical program.
First, we strongly believe that the PCAFC should be reformed to
ensure that veterans' efforts to be independent, when possible, do not
disqualify them from participating in this program. The current
requirement for veterans to need assistance ``each time'' they perform
an activity of daily living (ADL) \1\ is overly restrictive and fails
to recognize the reality of living with a catastrophic disability. As a
result, veterans have been unjustly denied participation in the PCAFC.
Instead, VA should adopt a less stringent requirement, such as
``regularly requires'' assistance.
---------------------------------------------------------------------------
\1\ 38 C.F.R. Sec. 71.15.
---------------------------------------------------------------------------
In addition, we continue to be concerned by the requirement for
veterans to have a 70 percent disability rating in order to be eligible
for the PCAFC. As PVA noted in our May 2020 comments on the proposed
rule, the necessary VA rating should be lowered to 50 percent or more;
or as combined with any other service-connected disability or
disabilities for a combined rating of 50 percent or more.'' Congress
believed that these veterans were of the highest concern, and assigned
them to VA health care priority group one, which is the highest
priority group a veteran can be assigned.'' \2\ We firmly believe the
current rating requirement is too restrictive as it has prevented many
deserving veterans from being eligible for the program and it should be
lowered to 50 percent.
---------------------------------------------------------------------------
\2\ Paralyzed Veterans of America, Comment Letter on Proposed Rule
about the Program of Comprehensive Assistance for Family Caregivers
Improvements and Amendments Under the VA MISSION Act of 2018 (May 5,
2020).
---------------------------------------------------------------------------
VA should also address the onerous criteria for assignment to the
highest tier under the PCAFC. Veterans with significantly different
levels of disability are assigned to the lowest tier, because of the
overly restrictive criteria for the highest tier. Our National
President, who is a quadriplegic, is in the PCAFC and was assigned the
lowest tier. Out of curiosity, he asked a nurse in the program what it
would take for a veteran to be placed in the higher tier. Essentially,
she told him the veteran would have to be bedbound and incoherent in
order for that to happen.
VA's current requirement fails to recognize that veterans who are
able to have a measure of independence still may need significant
caregiver assistance in completing their ADLs. PVA raised this concern
in our comments to VA's proposed rule in May 2020. We noted that,
``Requiring a veteran to be fully dependent on a caregiver each time he
or she completes three or more ADLs will result in few veterans being
eligible for the higher-level stipend. VA should reconsider this
requirement because it works against the department's efforts to foster
veterans' independence wherever and whenever possible and promotes
total reliance on a caregiver.'' \3\ This concern has now become a
reality and VA must remedy this problem when revising the PCAFC rule.
In the alternative, VA should provide additional tiers to recognize the
diversity of care needs and the burden on family caregivers.
---------------------------------------------------------------------------
\3\ Id.
---------------------------------------------------------------------------
In September 2022, VA announced the extension of legacy veterans
and their family caregivers in the program through September 2025. The
extension allows the department to continue supporting this cohort of
veteran caregivers, while they worked to ensure that PCAFC met the
unique needs of veterans of all eras and their caregivers. This cohort
of legacy veterans and their caregivers are once again facing an
uncertain future. Many of them have been found eligible for the program
over the years and endured multiple pauses, regulation and leadership
changes, lack of previous program standardization, and questionable
assessments. The physical and emotional toll on them is tremendous, and
they deserve some degree of certainty that will allow the Caregiver
Support Program to focus on its mission of supporting all generations
of caregivers.
Additional Supports Needed for Caregivers
A 2023 AARP report titled, ``Valuing the Invaluable,'' \4\
determined that family caregivers provide an average of 18 hours of
unpaid care per week. We have no doubt that commitment is even higher
whenever a veteran is involved. Many caregivers of veterans are taking
care of other family members and maintaining jobs outside the home. Too
many are forced, however, to reduce their hours or leave the workforce
entirely. The physical, emotional and financial toll of family
caregiving is enormous so it is extremely important that VA and
Congress do more for them.
---------------------------------------------------------------------------
\4\ Valuing the Invaluable
---------------------------------------------------------------------------
PVA supports the Credit for Caring Act (H.R. 7165) which would
provide an annual, nonrefundable Federal tax credit of up to $5,000 to
eligible family caregivers to help address the financial challenges of
caring for older parents, spouses, and other loved ones, while
remaining in the workforce. Another PVA endorsed bill, the Alleviating
Barriers for Caregivers (ABC) Act (H.R. 8018) would eliminate red tape
for caregivers who interact with Medicare, Medicaid, and Social
Security. Also, the PVA-supported Social Security Caregiver Credit Act
(H.R. 3729) would provide credits under Social Security to ensure that
caregivers are not penalized in retirement for taking time out of the
workforce to perform caregiving duties. The changes enacted by these
bills alone would go far in supporting those who care for the Nation's
veterans at home.
A growing number of veterans with chronic illnesses or other
disabling conditions receive care from unpaid family members. Many of
these family caregivers are also employed outside the home. While some
are able to alter their work schedules or take time off from their jobs
to provide hands on care, others are compelled to leave their jobs to
assume a fulltime caregiver role. Numerous barriers often impede this
important family decision, and the caregiver having access to their own
health insurance is likely to be chief among them. The primary
caregivers of veterans in PCAFC are fortunate because they receive
medical insurance coverage through VA's Civilian Health and Medical
Program (CHAMPVA). Granting access to CHAMPVA for other disabled
veterans who are not eligible for the PCAFC or who are not 100 percent
permanent and total would also benefit their caregivers, and keep many
of these veterans out of much more costly, institutional long-term
care.
Finally, we cannot overlook the importance of passing the many
caregiver-related provisions in the Elizabeth Dole Home Care Act (H.R.
542) which have now been incorporated into the much larger omnibus
package entitled, the Senator Elizabeth Dole 21st Century Veterans
Healthcare and Benefits Improvement Act (H.R. 8371). This includes a
requirement that the VA provide a personalized and coordinated handoff
of veterans and caregivers denied or discharged from the PCAFC into any
other home care program for which they may be eligible. Passage of this
legislation is one of PVA's top legislative priorities in 2024. We urge
Congress to complete action on this critically important legislation
immediately after it returns in November.
PVA would once again like to thank the committee for the
opportunity to submit our views on supporting veterans' caregivers, and
would be happy to take any questions for the record.
Information Required by Rule XI 2(g) of the House of Representatives
Pursuant to Rule XI 2(g) of the House of Representatives, the
following information is provided regarding Federal grants and
contracts.
Fiscal Year 2023
Department of Veterans Affairs, Office of National Veterans Sports
Programs & Special Events----Grant to support rehabilitation sports
activities--$479,000.
Fiscal Year 2022
Department of Veterans Affairs, Office of National Veterans Sports
Programs & Special Events----Grant to support rehabilitation sports
activities--$ 437,745.
Disclosure of Foreign Payments
Paralyzed Veterans of America is largely supported by donations from
the general public. However, in some very rare cases we receive direct
donations from foreign nationals. In addition, we receive funding from
corporations and foundations which in some cases are U.S. subsidiaries
of non-U.S. companies.
Prepared Statement of Quality of Life Foundation
Chairman Bost and Ranking Member Takano, and Members of the
Committee, thank you for allowing Quality of Life Foundation's Wounded
Veteran Family Care Program (QoLF WVFCP) to present our testimony to
you about veteran caregivers and their needs through this statement for
the record. Quality of Life Foundation is a national non-profit
organization that was founded in 2008 to address the unmet needs of
caregivers, children, and family members of those who have been
wounded, become ill, or were injured serving this Nation. Since 2008,
QoLF's mission evolved to include working directly with veterans and
caregivers as they attempt to apply for and navigate the Program of
Comprehensive Assistance for Family Caregivers (PCAFC) and other
clinical support programs within the Department of Veterans Affairs.
Serving all generations, we focus on those with significant wounds,
illnesses, or injuries, and find ourselves often assisting veterans
with the most complex needs.
As one of the few organizations working exclusively within the
Veterans Health Administration (VHA), QoLF has been a prime witness to
and help for caregivers utilizing many of the programs and services
available within VHA. While we do NOT provide clinical recommendations
of any kind, our role is to ensure that veterans and their caregivers
are prepared for the PCAFC process, assist in drafting clinical appeals
to ensure VHA is following its own regulations and directives, and
assist veterans and their caregivers in navigating other programs and
supports available to them.
Our role allows us to see the positive things which happen when
veterans and their caregivers are connected by caring, passionate
providers and social workers to the programs and services that enhance
both their care and quality of life. PCAFC, Respite, Veteran Directed
Care, and the Homemaker Home Health programs are just some of the
programs supporting veterans in their homes and serve as a lifeline for
veterans and their caregivers in need. Unfortunately, we also see what
happens when those especially vulnerable veterans and their caregivers
are not connected to these vital resources.
Overview
The recent RAND study, America's Military and Veteran Caregivers:
Hidden Heroes Emerging From the Shadows, highlights that veteran
caregivers often spend their time on a range of activities, including
providing personal care, managing medical tasks, and handling
administrative duties related to healthcare. Many caregivers also
reported high levels of emotional and physical strain, with significant
time dedicated to supporting their loved ones' mental well-being. This
study underscores the need for additional support and resources for
these caregivers to effectively manage their responsibilities. The RAND
study validates the trends that Quality of Life Foundation's staff see
on a daily basis when assisting veterans and their caregivers. And, as
QoLF has done previously, we will again make recommendations for
legislation that can assist those caregivers, this time with the
backing of evidence from the recently released RAND study.
Problems:
1. Veteran caregivers experience financial hardships. Military and
veteran caregivers lose an average of $13,105 annually in lost wages
and productivity due to their caregiving responsibilities. (RAND, viii)
35 percent of military and veteran caregiver households live at or
below 130 percent of the Federal poverty level, and less than 33
percent of those households are using government programs that provide
financial assistance, like the Supplemental Nutrition Assistance
Program, or SNAP. (RAND, viii-ix) In addition, fewer than half of
veteran caregivers are able to take advantage of workplace
accommodations, such as flexible hours, telecommuting, shortened work
weeks, which would make their caregiving easier, thus contributing to
income loss and higher caregiver burden. (RAND, ix)
2. Veteran caregivers experience a high mental health burden.
Specifically, 43 percent of military and veteran caregivers whose care
recipients were under 60 met the criteria for depression. 20 percent of
those caregivers had thought about suicide within the past 12 months,
and 36 percent said they needed mental health help but did not access
it. (RAND, vii). And 25 percent of caregiving military and veteran
caregiving parents reported that their children needed mental
healthcare. (RAND, viii)
3. Veteran caregivers do not feel valued by veterans' healthcare
teams. Veteran caregivers whose care recipients use VHA healthcare as
their primary healthcare believe their input on the veteran is not
valued. These caregivers also believe they are not included in
healthcare decisions made by the veteran's healthcare team, despite
being responsible for carrying out the treatment plan. Many caregivers
feel that they must follow up on care and paperwork from the VHA
healthcare team, and that their veterans experience healthcare delays.
(RAND, x) Many of these caregivers are caring for veterans with complex
wounds, illnesses, and injuries.
Recommended Solutions
1. Pass the Veteran Caregiver Re-education, Re-employment, and
Retirement Act (H.R. 9276). When the original legislation (PL 111-163)
was passed creating the VA Caregiver Support Program (CSP), the
unintended consequence of making the income from PCAFC an unearned
income stipend was that included caregivers have no means to save for
their own retirement or contribute to Social Security if there is no
other earned income in the home. (Combat Related Special Compensation,
VA Disability, and Social Security Disability Income are all considered
unearned income and are the only income sources for many veteran-
caregiver households.) Because no prior program had existed to support
caregivers in this way across the United States, the consequences for
retirement and Social Security contributions were not understood at the
time of the legislation. Caregivers first learned of the consequences
after they attempted to make contributions to their pre-existing
retirement accounts and were hit by fees for making unauthorized
contributions.
Additionally, caregivers have gaps in their resumes and lose their
employment certifications while caregiving for their loved one. When
their loved one either passes away or returns to independent
functioning, caregivers need to return to the workplace and have to
address these issues.
Since the creation of the CSP, caregivers have been concerned about
being able to prepare themselves for their retirement years. The
Veteran Caregiver Re-education, Re-employment, and Retirement bill
would study the issue of allowing caregivers to make contributions to
Social Security and other types of existing retirement accounts.
This bill would allow caregivers to have funds provided to renew
their professional certifications, study the feasibility of caregivers
being allowed to participate in a Department of Labor returnship
program, and create a study to explore VA incorporating former
caregivers into the VA workforce as personal care attendants which
would assist VHA in filling gaps in its workforce.
Ultimately, QoLF sees this bill as a way to support caregivers who
voluntarily supported their veterans through wounds, illnesses, and
injuries, while preventing them from falling into poverty and
necessitating that they rely on public assistance programs after
caregiving whether though aging out or through their veteran passing
away. QoLF is not asking Congress to fund retirement for these
caregivers, simply to find a pathway so caregivers have the option of
funding their own retirement accounts.
2. Pass the Credit for Caring Act (H.R. 7165). This legislation
provides up to a $5000.00 non-refundable Federal tax credit for working
family caregivers. The bill would help to offset a portion of
caregiving expenses that veteran caregivers are paying out of pocket.
It would cover home health aides, respite care, adult day care, etc.
3. Legislate the language surrounding Activities of Daily Living
and the level of assistance needed by the veteran to ensure the intent
of Congress to allow ``regular assistance with an ADL'' to be the
standard for PCAFC eligibility rather than the current assistance
standard of ``each and every time a veteran performs an ADL.'' The
requirement that a caregiver must assist a veteran with an Activity of
Daily Living (ADL) ``each and every time'' it is completed for
eligibility in PCAFC was reviewed by the courts. The Veteran Warriors,
Inc. v. McDonough ruled that this strict interpretation of assistance
with ADL's under VA's regulation was allowed under the legislation
creating PCAFC. However, VA Central Office CSP has acknowledged that
this strict interpretation is keeping veterans, especially older
veterans, out of the program and penalizing veterans for being able to
do anything for themselves which impedes progress in rehabilitation and
potentially causes patient harm. Prior to the 2020 regulation governing
PCAFC, the ADL standard for PCAFC was ``regular assistance'' which was
in line with the standard for Supervision, Protection, and Instruction.
By legislating this language, PCAFC would be opened to those
caregivers who have previously been denied participation, thus allowing
them to participate in PCAFC which would allow them financial
compensation for responsibilities that they have been fulfilling for
free and that has caused them to miss time at or leave their job,
impacting their income.
While QoLF would not normally ask Congress to legislate this
language to such specificity, we do so in this instance. The regulation
governing PCAFC has changed four times since the creation of this
program in 2011, and we are currently waiting for a new proposed
regulation to be published in the immediate future. In order to keep
changes from being made each time there is new leadership at the helm
of VA, we ask that Congress write the legislation into statute,
preventing the legislative language that exists now from being
continually re-interpreted by VA and necessitating the constant pauses
in PCAFC that have occurred since the programs inception.
4. Establish a cadre of specially trained case managers, similar to
the Federal Recovery Care Coordination Program (FRCP) and potentially
linked to the lead coordinator who can take on the most difficult
cases. This would benefit the individual caregiver and veteran while
freeing up the care managers and other case managers to serve more
veterans. While most caregiver and veteran dyads can be accommodated by
a simple phone call to a social worker or care manager, those with the
most complex needs often need an individual with the training,
competency, desire, and authority to request waivers, explore options,
and develop integrated care plans.
5. Ease the process of obtaining a case manager. It is difficult to
obtain a case manager and very little public information exists to
educate the veteran and the caregiver on case management. As a result,
caregivers do most of the case management for their care recipients.
If a caregiver were to look for a case manager the following might
ensue: The Richmond, Virginia VAMC homepage only mentions case
management once as a subheading for Post 9/11 M2VA Care. There is no
mention of co-morbid complex care case management or of disease
specific case management. If you click on Post 9/11 M2VA case
management, the description is not about multiple disease/condition/
injury care, but more a description of transitioning back into civilian
life after serving in the military. For those veterans that entered
Afghanistan in 2001 or Iraq in 2003, should they look for case
management services for multiple complex care needs, the description
would not be one that would likely cause them to connect with the M2VA
program or case managers. For any other veteran, not post 9/11, there
is no mention of case or care management programs on the front page for
that facility.
So how exactly does a veteran know that these programs exist, know
to ask for them, and know how to find them?
6. Establish a ``Pathway to Advocacy'' for outside organizations to
officially assist veterans and caregivers within VHA. QoLF strongly
supports the recent Senate introduction of the CARE Act of 2023 which
includes a provision requiring the Secretary to develop a process to
train and recognize non-profit organizations to assist in the
navigation of programs and services within the Veterans Health
Administration, allowing support and assistance for caregivers in
obtaining care for their veteran care recipients. While QoLF currently
uses Releases of Information to advocate on behalf veterans and
caregivers, such a process would allow certified organizations to work
more effectively WITH social workers and care managers to better
support the population we all serve.
7. Pass the Elizabeth Dole Home Care Act (H.R. 542). QoLF strongly
supports the passage of this act which provides expanded mental health
care and respite care for veteran caregivers in the Program of General
Caregiver Support Services who do not currently receive mental health
care in support of their caregiving duties. This also honors veterans'
decisions to be cared for in their homes by eliminating the home care
cost cap that currently forces a veteran into a nursing home.
Additionally, QoLF offered language in this bill that would ensure if
veterans and caregivers were found ineligible for PCAFC, other programs
the care recipient was qualified for would have to be identified and
put in place before the caregiver could be removed from PCAFC or as a
result of a denial of PCAFC. This would allow caregivers to feel
supported.
Conclusion
Quality of Life Foundation would like to thank the Committee for
allowing us to offer these suggestions to improve the lives of military
and veteran caregivers as well as the veterans for whom they care. We
would be happy to answer any questions that you have.
Prepared Statement of Blue Star Families
Chairman Bost and Ranking Member Takano, thank you for holding this
critically important hearing on ``Everyday Heroes: Supporting the
Veteran Caregiver Community.''
I am the Associate Director of Policy at Blue Star Families--the
nation's leading grass-roots military family support organization, with
over 300,000 members and impacting more than 1.5 million military and
Veteran family members every year. By cultivating innovative programs
and partnerships, Blue Star Families seeks to ensure no matter where
their service takes them, our military and Veteran families always feel
connected, supported, and empowered to thrive. This approach ensures
military readiness and enhances retention and recruiting efforts.
With 13 chapters strategically located across the country and a
robust and secure digital presence, Blue Star Families provides both
virtual and in-person support, creating a consistent and reliable
presence that resonates with military, Veteran, guard, and reserve
families. Our chapters are unique and serve as vital hubs where
innovative programs, events, and services are offered, fostering a
sense of community and connection. By providing opportunities to engage
with civilian neighbors, institutions, and organizations, we aim to
integrate military families seamlessly into their local communities.
For well over 10 years, Blue Star Families has recognized
caregivers in military families as a vital member of the military
community and provided them with personalized and intimate programming
and reliable resources. While our programs continuously innovate and
adapt to evolving caregiver needs, the one thing that has remained
constant is that Blue Star Families is a trusted ally and supporter for
ALL caregivers.
The term ``Military caregivers'' is currently defined as those
caring for an active-duty or Veteran service member who has serious
injuries or illnesses,\1\ likely caused by military service. This
definition falls short of fully capturing the scope of caregiving for
today's military family. ``Military caregivers'' are disproportionately
wives caring for a spouse or partner with a military-connected injury,
or sometimes adult children or battle buddies.\2\
---------------------------------------------------------------------------
\1\ Strong, J. (2018). Military Caregivers. Clinical Social Work
Journal. 46. 156-163. DOI: https://doi.org/10.1007/s10615-018-0657-6
\2\ Ramchand, R., Tanielian, T., Fisher, M.P., Vaughan, C.A.,
Trail, T.E., Batka, C., et al. (2014). Hidden Heroes: America's
Military Caregivers. Santa Monica, CA: RAND Corporation, 2014. https://
www.rand.org/pubs/research_reports/RR499.html.
---------------------------------------------------------------------------
Amending the term and referring to them instead as ``caregivers in
military families'' allows for the inclusion of caregivers of all
kinds.\3\ A caregiver in a military family may care for children with
special needs, other family members with chronic conditions, aging
parents and grandparents, battle buddies, and many others.\4\
---------------------------------------------------------------------------
\3\ Blue Star Families. (2021). Special report: Caregiving in
military families. https://bluestarfam.org/wp-content/uploads/2021/06/
BSF_RCI_Caregiving_Report_2021.pdf
\4\ Blue Star Families. (2021). Special report: Caregiving in
military families. https://bluestarfam.org/wp-content/uploads/2021/06/
BSF_RCI_Caregiving_Report_2021.pdf
---------------------------------------------------------------------------
Additionally, a significant yet often overlooked group of
caregivers, commonly referred to as Hidden Helpers, has gained
attention through the work of the Elizabeth Dole Foundation. These are
children and youth who live in homes with injured or ill service
members and Veterans.\5\ Despite their young age, they take on
caregiving responsibilities, often without realizing the extent of
their role.
---------------------------------------------------------------------------
\5\ Elizabeth Dole Foundation, Wounded Warriors Project, Hidden
Helpers. (n.d.). What you need to know about hidden helpers. Hidden
Heroes.https://hiddenheroes.org/wp-content/uploads/2021/11/EDF-
HiddenHelpers-Programs.pdf
---------------------------------------------------------------------------
It is estimated that 2.3 million Hidden Helpers across the United
States provide essential care and support to their loved ones.\6\ These
young caregivers manage tasks ranging from assisting with daily
activities to providing emotional support, all while balancing school
and other personal commitments.
---------------------------------------------------------------------------
\6\ Malick, S., Sandoval, M., Santiago, T., Jacobs Johnson, C.,
Gehrke, A., & Metallic, E. (2022). Hidden helpers at the frontlines of
caregiving: Supporting the healthy development of children from
military and veteran caregiving homes (No.
0cb41ff18c0a4064abd0dca2b83008a7). Mathematica Policy Research. https:/
/hiddenheroes.org/wp-content/uploads/2022/01/Hidden_Helpers.pdf
---------------------------------------------------------------------------
Despite their critical contributions, many Hidden Helpers do not
see themselves as caregivers. Instead, they view their actions as
simply doing what is best for their family members.\7\ Blue Star
Families 2021 Special Report on Caregiving also found this to be true
of adult caregivers.\8\
---------------------------------------------------------------------------
\7\ Malick, S., Sandoval, M., Santiago, T., Jacobs Johnson, C.,
Gehrke, A., & Metallic, E. (2022). Hidden helpers at the frontlines of
caregiving: Supporting the healthy development of children from
military and veteran caregiving homes (No.
0cb41ff18c0a4064abd0dca2b83008a7). Mathematica Policy Research. https:/
/hiddenheroes.org/wp-content/uploads/2022/01/Hidden_Helpers.pdf
\8\ Blue Star Families. (2021). Special report: Caregiving in
military families. https://bluestarfam.org/wp-content/uploads/2021/06/
BSF_RCI_Caregiving_Report_2021.pdf
---------------------------------------------------------------------------
Caregivers in military families often have to balance caregiving
responsibilities with the unique demands of the military lifestyle.
This lifestyle brings its own set of challenges, frequently
prioritizing military service obligations and daily job demands over
family and caregiving needs. These challenges can include separations
from the service member due to deployments or training, leading to
periods of isolation from family and friends.
These caregivers face the same military lifestyle challenges as
their non-caregiver peers, but their issues are often intensified. For
example, the stress of frequent moves not only disrupts the family
routine but also complicates access to consistent medical care and
support services for their loved ones.\9\ The service member's absence
can leave caregivers solely responsible for managing the household and
caregiving duties, adding to their emotional and physical burden.
---------------------------------------------------------------------------
\9\ Blue Star Families. (2021). Special report: Caregiving in
military families. https://bluestarfam.org/wp-content/uploads/2021/06/
BSF_RCI_Caregiving_Report_2021.pdf
---------------------------------------------------------------------------
Furthermore, typical stressors of military life, such as financial
instability and the pressure of adapting to new environments, carry
different and more profound meanings for caregivers. The need to find
new healthcare providers and support systems with each move is
daunting, and the isolation felt during a service member's absence is
more pronounced for those already under the strain of caregiving.
Sustaining programs that support their well-being and self-care are
essential, as they play a pivotal role in maintaining caregivers'
health and happiness and the overall resilience of our military
community.
Our enduring partnership with the Veterans United Foundation
remained steadfast in supporting the Caregivers Empowering Caregivers
(CEC) Program, an integral program within Blue Star Families. This
partnership enabled us to expand and enhance our program, which is
focused on providing crucial resources, support networks, and education
to empower caregivers.
Dedicated to the principles of self-care, resource sharing, and
community building, we offer a platform for caregivers to connect,
share experiences, and develop strategies for self-care. We equip
participants with the tools and resources to manage their caregiving
responsibilities while prioritizing their own well-being.
In 2022, the Blue Star Families of Dayton & Southwestern Ohio
Chapter embarked on an inspiring initiative to strengthen community
bonds and support students within Franklin City Schools and Lakota East
Schools. This initiative led to the creation of the Purple Star &
Hidden Helper Club, a beacon of togetherness and understanding for
students with diverse backgrounds and experiences.
The program started modestly with just six students but quickly
expanded, eventually welcoming over 40 students. This diverse group
included children of active-duty service members, Guard/Reserve
members, Hidden Helpers, and civilian students. The club's growth
highlighted its significant impact and the importance of such support
systems within schools. Throughout the school year, these students
gathered monthly, focused on the noble cause of fostering a sense of
belonging and mutual support among students.
This initiative is an excellent model of the importance of
community-level stewardship, which supports military-connected children
and fosters a broader sense of empathy and understanding among all
students.
In that same community in April 2023, during the Month of the
Military Child, an extraordinary vision board activity took place,
filled with laughter, creativity, and the delightful aroma of pizza.
This special event was designed to foster new friendships, deepen
existing bonds, and promote a greater understanding of military
culture.
For the Hidden Helper students, this initiative was significant.
These students face the daily challenge of balancing their academic
pursuits with caregiving responsibilities at home, creating a life
filled with unpredictability and stress. The event offered them a
cherished moment of respite and camaraderie, allowing them to relax and
connect with peers who understood their experiences.
The event fostered a sense of belonging and solidarity among the
students. As they crafted their vision boards, they shared their dreams
and aspirations, discovering common ground and building a network of
mutual support.
This is the story of the Purple Star & Hidden Helper Club, where
every journey is shared, and no one walks alone. Through events like
these, the club continues to foster a supportive and understanding
community, celebrating the resilience and strength of military-
connected children and their caregivers.
In 2023, Blue Star Families offered in-person Caregivers Empowering
Caregivers programming in four of our Chapter locations nationwide.
These in-person programs invite up to 20 caregivers in each location to
be part of a cohort that meets four or more times during the year.
These face-to-face interactions offer a secure environment for
caregivers to come together, establish connections, and allocate
dedicated time to prioritize their personal self-care journeys.
The Caregivers Empowering Caregivers Program had 12 in-person
cohorts and served 126 caregivers and Hidden Helpers. Data collected
through the program's post-event surveys revealed diverse
participation: 36 percent were Veteran spouses, 27 percent were active-
duty spouses, and 18 percent were Veterans. Furthermore, 45 percent
identified as Black, Indigenous, people of color, or multiracial.
The feedback was overwhelmingly positive. Every participant (100
percent) felt respected, able to connect with others, and comfortable
expressing themselves. This inclusive environment fostered a sense of
community and belonging among the attendees.
Quotes from Participants
The joy of seeing many military-affiliated caregivers taking some
time out to relax, network, share experiences, and laugh brings great
fulfillment to me.--Army Reserve Spouse
I loved being able to talk to others who ``get it.'' Being a
caregiver and a military spouse can be so isolating and lonely at
times.--Active-Duty Air Force Spouse
The survey also highlighted tangible outcomes from the cohort. Over
41 new peer connections were established, creating a supportive
caregiver network. Additionally, 73 percent of participants were
introduced to new resources that could aid them in their caregiving
roles. This exposure significantly enhanced their understanding of
available support, with 73 percent reporting a deeper knowledge of
local resources. Moreover, 54 percent of participants learned how to
navigate these existing resources better, empowering them to utilize
the support systems effectively.
The Caregivers Empowering Caregivers cohorts provided a respectful
and inclusive space for caregivers, facilitated meaningful connections,
and increased awareness and understanding of valuable resources. This
initiative by Blue Star Families has significantly impacted the
participants, equipping them with the tools and networks necessary to
support their caregiving journey.
Blue Star Families continues to demonstrate its unwavering
commitment to military and Veteran families through innovative programs
and dedicated support. By creating a network of inclusive and
empowering initiatives, we have made significant strides in ensuring
that these families feel connected, supported, and empowered, no matter
where their service takes them.
The success stories and positive feedback from participants
underscore the critical impact of Blue Star Families' work. Whether
it's through supporting Hidden Helpers, facilitating new friendships
and resource awareness, or offering a platform for self-care and mutual
support, Blue Star Families has shown that a strong, supportive
community is essential for the resilience and well-being of military
and Veteran families.
As we continue to evolve and expand our programs to meet the
changing needs of our communities, Blue Star Families remains a trusted
ally and steadfast supporter for all caregivers within military and
Veteran families. Our dedication ensures that no military-connected
family has to navigate their journey alone, reinforcing our role as a
cornerstone of support and empowerment within the military and Veteran
community.
Policy recommendations
Extend the U.S. Department of Veterans Affairs' Program
of Comprehensive Assistance for Family Caregivers (PCAFC) \10\ for
Legacy Participants and Legacy Applicants through Sept. 30, 2025.
---------------------------------------------------------------------------
\10\ https://news.va.gov/115526/good-news-for-veterans-and-
caregivers/
Develop accommodations through the Department of
Education for Hidden Helpers in K-12 and Higher Education settings to
---------------------------------------------------------------------------
allow for caring of family members.
Develop tax credits for caregivers to promote financial
stability.
Promote work environments that are supportive of
caregivers.
A national campaign to address the stigma associated
with caregiving to ensure employers and others are supportive
of caregivers.
Continue to conduct rigorous evaluations of those
initiatives designed to support military and veteran caregivers.\11\
---------------------------------------------------------------------------
\11\ Ramchand, R., Dalton, S., Dubowitz, T., Hyde, K., Malika, N.,
Morral, A.R., Ohana, E., Parks, V., Schell, T.L., Swabe, G., Trail,
T.E., & Williams, K.M. (2024). America's military and Veteran
caregivers: Hidden heroes emerging from the shadows. RAND Corporation.
https://www.rand.org/pubs/research_reports/RRA3212-1.html
Continue to conduct research that fully captures the
breadth of caregiving and those who serve as caregivers.\12\
---------------------------------------------------------------------------
\12\ Ramchand, R., Dalton, S., Dubowitz, T., Hyde, K., Malika, N.,
Morral, A.R., Ohana, E., Parks, V., Schell, T.L., Swabe, G., Trail,
T.E., & Williams, K.M. (2024). America's military and Veteran
caregivers: Hidden heroes emerging from the shadows. RAND Corporation.
https://www.rand.org/pubs/research_reports/RRA3212-1.html
Thank you for holding this important hearing. Please use Blue Star
Families as a resource when you consider this or other matters of
---------------------------------------------------------------------------
concern to military and Veteran families.
[all]