[Joint House and Senate Hearing, 118 Congress]
[From the U.S. Government Publishing Office]
. S. Hrg. 118-362
HEROES AT HOME: IMPROVING SERVICES
FOR VETERANS AND THEIR CAREGIVERS
=======================================================================
JOINT HEARING
BEFORE THE
SPECIAL COMMITTEE ON AGING
AND THE
COMMITTEE ON VETERANS' AFFAIRS
UNITED STATES SENATE
ONE HUNDRED EIGHTEENTH CONGRESS
SECOND SESSION
__________
WASHINGTON, DC
__________
JUNE 5, 2024
__________
Serial No. 118-20
Printed for the use of the Special Committee on Aging
[GRAPHIC NOT AVAILABLE IN TIFF FORMAT]
Available via the World Wide Web: http://www.govinfo.gov
__________
U.S. GOVERNMENT PUBLISHING OFFICE
56-167 PDF WASHINGTON : 2025
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SPECIAL COMMITTEE ON AGING
ROBERT P. CASEY, JR., Pennsylvania, Chairman
KIRSTEN E. GILLIBRAND, New York MIKE BRAUN, Indiana
RICHARD BLUMENTHAL, Connecticut TIM SCOTT, South Carolina
ELIZABETH WARREN, Massachusetts MARCO RUBIO, Florida
MARK KELLY, Arizona RICK SCOTT, Florida
RAPHAEL WARNOCK, Georgia J.D. VANCE, Ohio
JOHN FETTERMAN, Pennsylvania PETE RICKETTS, Nebraska
----------
Elizabeth Letter, Majority Staff Director
Matthew Sommer, Minority Staff Director
SENATE COMMITTEE ON VETERANS' AFFAIRS
JON TESTER Montana, Chairman
PATTY MURRAY, Washington JERRY MORAN, Kansas, Ranking
BERNARD SANDERS, Vermont Member
SHERROD BROWN, Ohio JOHN BOOZMAN, Arkansas
RICHARD BLUMENTHAL, Connecticut BILL CASSIDY, Louisiana
MAZIE K. HIRONO, Hawaii MIKE ROUNDS, South Dakota
JOE MANCHIN III, West Virginia THOM TILLIS, North Carolina
KYRSTEN SINEMA, Arizona DAN SULLIVAN, Alaska
MARGARET WOOD HASSAN, New Hampshire MARSHA BLACKBURN, Tennessee
ANGUS S. KING, JR., Maine KEVIN CRAMER, North Dakota
TOMMY TUBERVILLE, Alabama
----------
TONY McCLAIN, Staff Director
DAVID SHEARMAN, Republican Staff Director
C O N T E N T S
----------
Page
Opening Statement of Senator Robert P. Casey, Jr., Chairman,
Special Committee on Aging..................................... 1
Opening Statement of Senator Jon Tester, Chairman, Committee on
Veterans' Affairs.............................................. 3
Opening Statement of Senator Rick Scott, Special Committee on
Aging.......................................................... 4
Opening Statement of Senator Jerry Moran, Ranking Member,
Committee on Veterans' Affairs................................. 5
PANEL OF WITNESSES
Peter Townsend PA-C Emeritus, Veteran and Self Advocate,
Susquehanna, Pennsylvania...................................... 7
Hannah Nieskens, Caregiver of Post-9/11 Veteran, Cardwell,
Montana........................................................ 9
Andrea Sawyer, National Advocacy Director, Quality-of-Life
Foundation's Wounded Veteran Family Care Program, Winston-
Salem, North Carolina.......................................... 11
Fred Sganga MPH, FACHE, LNHA, Legislative Director, National
Association of State Veterans Homes, Long Island, New York..... 13
Meredith Beck, National Policy Director, Elizabeth Dole
Foundation, Washington, D.C.................................... 14
APPENDIX
Opening Statements
Opening Statement of Senator Mike Braun, Ranking Member.......... 44
Prepared Witness Statements
Peter Townsend PA-C Emeritus, Veteran and Self Advocate,
Susquehanna, Pennsylvania...................................... 47
Hannah Nieskens, Caregiver of Post-9/11 Veteran, Cardwell,
Montana........................................................ 49
Andrea Sawyer, National Advocacy Director, Quality-of-Life
Foundation's Wounded Veteran Family Care Program, Winston-
Salem, North Carolina.......................................... 53
Fred Sganga MPH, FACHE, LNHA, Legislative Director, National
Association of State Veterans Homes, Long Island, New York..... 62
Meredith Beck, National Policy Director, Elizabeth Dole
Foundation, Washington, D.C.................................... 68
Questions for the Record
Peter Townsend PA-C Emeritus, Veteran and Self Advocate,
Susquehanna, Pennsylvania...................................... 74
Hannah Nieskens, Caregiver of Post-9/11 Veteran, Cardwell,
Montana........................................................ 75
Andrea Sawyer, National Advocacy Director, Quality-of-Life
Foundation's Wounded Veteran Family Care Program, Winston-
Salem, North Carolina.......................................... 76
Fred Sganga MPH, FACHE, LNHA, Legislative Director, National
Association of State Veterans Homes, Long Island, New York..... 80
Meredith Beck, National Policy Director, Elizabeth Dole
Foundation, Washington, D.C.................................... 81
C O N T E N T S (cont'd)
----------
Page
Statements for the Record
The Alzheimer's Association and Alzheimer's Impact Movement (AIM)
Testimony...................................................... 84
Jack Evans Testimony............................................. 86
Jacob Johnson Testimony.......................................... 87
Jerry Hromisin Testimony......................................... 90
Mark Rosensteel Testimony........................................ 91
Rob Grier Testimony.............................................. 93
HEROES AT HOME: IMPROVING SERVICES
FOR VETERANS AND THEIR CAREGIVERS
----------
Wednesday, June 5, 2024
U.S. Senate
Special Committee on Aging,
Committee on Veterans' Affairs
Washington, DC.
The Committee met, pursuant to notice, at 10:01 a.m., Room
50, Dirksen Senate Office Building, Hon. Robert P. Casey, Jr.,
Chairman of the Committee, presiding.
Present: Senator Casey, Tester, Murray, Brown, Gillibrand,
Blumenthal, King, Hassan, Kelly, Warnock, Moran, Cassidy, Rick
Scott, Tuberville, and Ricketts.
OPENING STATEMENT OF SENATOR ROBERT P. CASEY. JR.,
CHAIRMAN, SPECIAL COMMITTEE ON AGING
The Chairman. The Senate Special Committee on Aging and
Senate Veterans Affairs Committee will come to order.
Welcome to our first joint hearing. This joint committee
hearing, this Congress entitled, "Heroes at Home. Improving
Services for Veterans and Their Caregivers." It has been more
than a decade since the Aging Committee held a joint hearing,
and I want to thank Senator Tester and Senator Moran for
bringing together our two Committees today to examine the
important issues and unique challenges faced by veterans and
their caregivers.
I also want to note that Senator Scott, a member of our
Aging Committee, will be serving as the Ranking Member for the
Aging Committee hearing today that is part of this joint
hearing, and I am grateful for his leadership in acting and in
that capacity.
Our conversation today is particularly timely given that
tomorrow is the 80th anniversary of D-Day, commemorating the
Allied invasion of Normandy during World War II. We thank those
service members who fought on that day, and obviously, just
saying that doesn't convey anywhere near the depth of our
gratitude for all that they did to save our country and to
literally save the world.
We, of course, extend that thanks to those who are serving
today, all members of the Armed Forces, for the work they do
every day protecting our Nation. Veterans and their families
make great sacrifices to serve our country.
Our duty as members of the Senate is to provide support to
those who serve our country. We must provide care for those who
return home from service with injuries, both mental and
physical, and for those who face disease or illness later in
life.
Today's hearing is about the military family and paid
caregivers who uphold this duty to provide invaluable long-term
care to veterans. Joining us today are some of the most
resilient people in the Nation, both our veterans and their
caregivers, the caregivers who provide unwavering support to
the men and women who served in the Armed Forces.
I have said this before, we cannot claim to be the greatest
country in the world if we do not have the greatest caregiving
in the world, and that includes supporting the military
families and their paid caregivers. Military caregivers come in
many different forms, spouses, family, friends, neighbors, and
paid workers.
The majority, actually more than 96 percent of those
caregivers, are women, and we will hear from our witnesses
today that caring for a loved one can place a significant
physical, emotional, and financial stress on the veteran, the
caregiver, and family members.
Additional challenges for caregivers include navigating the
VA system, applying for programs, and finding other resources.
We will hear today from Peter Townsend, who comes to us from
Susquehanna County, Pennsylvania.
He is joined by his wife and caregiver, Lisa, and we will
hear from them about the needs and the experience of being a
care recipient, and what that care means to his continued
quality of life and health. long-term care is intended to
provide supports and services to help people live independently
and as safely as possible in the setting of their choice.
Caregiving services may include, of course, help with
activities of daily living, managing medications,
transportation, and so much more. The VA offers a wide range of
long-term care programs, providing a model of how to honor the
desires of those who want to continue living independently in
their homes and in their communities.
For example, many veterans rely on VA respite care so
caregivers can take a much needed time off for themselves or
home health aide services to help them in their homes while the
VA offers options and supports for veterans and their
caregivers, we will hear from our witnesses today that we must
do an awful lot more.
We must strengthen the long-term care supports that are
currently available and help more caregivers access these
services. That is why I am proud to support bipartisan and
bicameral legislation to expand veterans' access to long-term
care services and supports through the Elizabeth Dole Home Care
Act.
I want to thank my colleagues, Senator Tester, Senator
Moran, and Senator Hassan for leading on this important effort.
The VA's Program of Comprehensive Assistance for Family
Caregivers, known as PCAFC, is an important support for family
caregivers. It has, however, had challenges over the past
decades.
As the program has been reconfigured, too many veterans and
their caregivers have been denied benefits. This is not a new
problem. In 2017, the Senate Aging Committee held a hearing on
military caregivers.
During that hearing, two of my constituents, Wanda and
Samuel Ickes, discussed how the VA pushed them out of the
Family Caregivers Program. In response to those concerns, I
released a report on the program entitled, Discharged and
Denied. My report found that the VA failed to anticipate the
need of the caregivers' program, then abruptly discharged
thousands of veterans, all without oversight or a clear appeals
process.
Now that veterans of all eras are eligible for the Family
Caregivers Program, the VA must, must not repeat its earlier
mistakes. The VA should act swiftly to ensure the program
benefits every single family it was meant to serve.
With the recent patch and passage in implementation of the
Pact Act, we have seen the largest health care and benefits
expansion in the VA's history. The Pact Act expanded access to
health care for veterans who experienced toxic exposures in the
Vietnam Gulf War and post 9/11 eras, which has now helped grant
one million claims to veterans.
We need to make sure the VA has the resources it needs to
support these newly enrolled veterans and their caregivers, and
finally, we need to make sure the VA's resources are accessible
to those who are designed to serve.
As Chairman of this Committee, the Aging Committee, I have
pushed to make the VA make its websites and technology
accessible for people with disabilities, including injured
service members, as required by law.
I am pleased that the VA has made progress, but more work
remains to be done. I am working with Senator Scott to pass
Senate Bill 2516, the Veterans Accessibility Act, which will
require the VA to establish a Veterans Advisory Committee on
equal access to evaluate the VA's compliance with all, all
Federal disability laws.
I want to thank Senator Scott for your support on the
Veterans Accessibility Act and to the Dole Foundation for
endorsing the bill but thank you for that. We have our work cut
out for us, obviously. We need to uphold our duty, and it is
our duty, to support our veterans and their families.
We need to make sure the programs designed to serve them
are working as intended, and we need to make sure VA resources
are accessible. We need to take our lessons learned from the VA
to ensure that all who provide long-term care support and
services, whether they are military or civilian, family members
or direct care workers, we need to make sure that these
individuals are valued and are compensated for their work.
I look forward to hearing from our witnesses today about
their essential work and how Congress, and especially the
Senate, can better support our Nation's military caregivers and
their family.
Before I turn to Chairman Tester, I am going to run out
because I have to go to Judiciary Committee to introduce a
judge for a brief period of time, and I will be running back. I
will miss Chairman Tester's opening, but I will make sure that
I tune into C-Span to see it.
Thank you. Chairman Tester.
OPENING STATEMENT OF SENATOR JON TESTER, CHAIRMAN,
COMMITTEE ON VETERANS' AFFAIRS
Chairman Tester. We will miss you for a few minutes. Thank
you, Chairman Casey. I want to thank Senator Scott for being
here from the Aging Committee, for jointly convening this
important hearing with the Veterans Affairs Committee to
discuss veterans' caregivers.
Look, over the years, I have worked with leadership of
these Committees on several important initiatives related to
career givers, including the Elizabeth Dole Home Care Act with
Ranking Member Moran and Chairman Casey, and the Care Act with
Ranking Member Braun. Today, we hope to get additional feedback
and direction from our witnesses to guide these and future
efforts.
I want to thank all the witnesses for being here. You are
critically important in this process. I especially want to
welcome Hannah Nieskens. Sorry about that, Hannah. She is from
the metropolis of Cardwell, Montana. Hannah cares for her
husband, Kelly, who was injured while serving in the Montana
Army National Guard back in 2005.
That means she has been Kelly's primary caregiver for
nearly 20 years, while raising three kids and working at the
White Hall School District. Hannah, I want to thank you for
everything you do.
You are an inspiration to the folks on this side of the
dais. Our caregivers do their jobs every single day, providing
critical care and support to veterans when they need it most,
but for them to get the support assistance they truly need,
Congress needs to do its job.
I want to note--I would like to note that the House is
currently deliberating the path forward on a package of bills
negotiated by the Senate and House Veterans Affairs Committee,
named the Elizabeth Dole 21st Century Veterans Health Care and
Benefits Improvement Act.
This is comprehensive legislation that would expand access
to home and community-based care programs for veterans, and
bolster home health care staffing, attempts to strengthen the
VA caregiver and long-term care programs.
I look forward to getting this piece of legislation done by
working with the Dole Foundation, who has been a long-time
champion of these issues and this legislation. I look forward
to working with the veterans service organizations to finally
get this over the finish line on behalf of our Nation's
caregivers.
Why? Because our veterans have earned this. With that I am
going to turn it over to Senator Scott for his remarks.
OPENING STATEMENT OF SENATOR RICK SCOTT,
SPECIAL COMMITTEE ON AGING
Senator Rick Scott. Thank you, Chairman Tester. Good
morning. I would like to thank everyone for being here today
and want to welcome you all to this historic joint meeting of
the Senate Aging and Veteran Affairs Committees.
I want to thank Chairman Casey and Tester, as well as
Ranking Members Braun and Moran, for having this hearing today.
It is an honor to stand in for Ranking Member Braun today,
especially on an issue so personal to me and my family and
millions of Americans nationwide. I would like to put in
Senator Braun's, Ranking Member Braun's testimony into the
record.
Senator Tester. Without objection.
Senator Rick Scott. This hearing is an important
opportunity to hear about some key issues affecting veterans
receiving care and their caregivers as they age. As a Navy
veteran, the son of a World War II veteran, I know firsthand
the sacrifices made by our military members and their families.
I think about my dad, Orba.
He had a sixth-grade education and joined the Army as a
teenager, fought in the Battle of the Bulge and did all combat
jumps in World War II with the 82nd Airborne. He flew into
Normandy that morning. He didn't talk about service a lot, but
he was so proud to be in the U.S. Army--proud to wear the
uniform and defend our freedoms.
He told me the Germans were bad, the food was bad, the
foxholes were bad, so I joined the Navy. None of the
opportunities and freedoms we have as Americans would be
possible without the dedicated services of our brave heroes
like my father and those who have served.
That is why throughout my time as Governor of Florida, I
made it my mission to turn our State into the most active-duty
military and veteran friendly State in the Nation by championed
important legislation and funding to support priorities that
matter most to Floridians, Florida's active duty military and
veterans families.
Fighting for our heroes continues to be one of our top
priorities as a U.S. Senator. I always do everything I can to
support our veterans and their families so they can succeed and
pursue their dreams in our State.
I am proud to be a co-sponsor and supporter of dozens of
veterans related bills in the Senate, including the Elizabeth
Dole Home Care Act, the Major Richard Starr Act, and the Pact
Act. Our veterans showed up for our Nation and sacrificed so
much.
It is so important that we show up, support them after
their service, and make sure they have every resource they
need. It is also imperative today to recognize the critical
role played by our country's 5.5 million military caregivers,
who range from spouses, parents, children, friends, and family
members, who dedicate their lives and often give up so much to
care for those who serve our country.
I have the greatest honor of serving as United States
Senator and representing our veterans, honorable caregivers,
hardworking Florida families, and their American people. Thank
you, Chairman Tester.
Chairman Tester. Senator Moran.
OPENING STATEMENT OF SENATOR JERRY MORAN, RANKING MEMBER,
COMMITTEE ON VETERANS' AFFAIRS
Senator Moran. Chairman, thank you. I thank you and the
Ranking Member, Senator Scott, for leading this hearing today,
and I welcome our witnesses and look forward to their
testimony.
Caregivers who are often overlooked and forgotten simply
have a profound impact on our Nation's veterans. They are
invaluable in making certain that veterans with even the most
complex conditions receive the care and dignity that they
deserve.
It is disheartening to hear too frequently from dedicated
caregivers in Kansas and elsewhere about the numerous obstacles
they face in dealing with the Department of Veterans Affairs. I
have heard from caregivers who were denied services from the VA
Family Caregivers Program for vague reasons, and in some cases,
were only given a one sentence explanation.
In far too many cases--and a lot of what I know about this
is what veterans and their caregivers tell me, and what
casework we do in our office to try to solve those problems.
Far too often in these cases, the VA is failing to provide
families with a clear, detailed explanation of how to appeal a
VA decision, or what other VA programs and services they might
be eligible for.
This leaves the caregiver and veteran alike in limbo,
uncertain how to get the support they so desperately need.
Congress expanded the Family Caregiver program to veterans of
all ages in the Mission Act, which was signed into law six
years ago tomorrow.
While I expect there to be growing pains, that is to be
expected when the VA is implementing new legislation, it is
always disappointing to hear that the Expanded Family Caregiver
Program is not in a better place than it is today.
As we continue to wait for the VA to issue new regulations,
I look forward to hearing from our witnesses about the Family
Caregiver Program, how it must evolve to provide caregivers and
veterans the support they need. I introduced the Elizabeth Dole
Home Care Act, which would address the needs of veterans,
caregivers, and their families.
This legislation, if implemented correctly, would make it
easier for veterans to stay at home as they age by expanding
and improving the VA's home and community-based programs.
Almost half of VA patient population is over 65, and we know an
increasing number of those veterans want to live at home,
surrounded by their families, in their communities, and loved
ones, rather than the transition into a nursing home.
VA should honor veterans' preferences when, where, and how
to receive care. I also look forward to discussing how Congress
and the VA can better support state veteran homes, which play a
critical role in caring for veterans across the country. We
have two in our State, and we are trying to develop a third,
and the process we are going through to accomplish that third
one is amazingly slow.
Again, thanks to our witnesses, and to my colleagues on the
Aging and Veterans Affairs Committees, for being here today,
and with that, Mr. Chairman, I yield.
Senator Tester. I want to thank both of you and Congressman
Scott for your testimony. What?
Senator Murray. Senator.
Senator Tester. Oh, it is Senator--you didn't. You skipped
that, as I did. Thank you very much, Senator Scott. Sorry about
that. I am going to introduce the first witness today, and then
we will introduce the second ones before they come up to speak.
The first witness is from Casey Country. His name is Peter
Townsend. He is from Auburn Township in the great State of
Pennsylvania. Mr. Townsend served in the United States Army on
active duty from 1982 to 1986. He later worked as a physician
assistant until early retirement in 2014.
Sorry, Bobby, I am taking your thunder. In 2014, due to
complications from primary progressive multiple sclerosis. He
is accompanied by his wife Lisa who serves as his full-time
caregiver. I want to thank you both for being here today, and
unless Bob has something you would like to add, you can
progress with your testimony, Mr. Townsend.
STATEMENT OF PETER TOWNSEND PA-C EMERITUS, VETERAN
AND SELF ADVOCATE, SUSQUEHANNA, PENNSYLVANIA
Mr. Townsend. Thank you. Chairmans Casey and Tester,
Ranking Members Braun and Moran, and distinguished members of
the Committees, thank you for the opportunity to speak with you
today regarding my experiences with caregiver support services
available through the VA.
My name is Peter Townsend, and I am currently 60 years old
and live in Susquehanna County, Pennsylvania with my wife Lisa,
who is also my caregiver. I served on active duty in the United
States Army from 1982 to 1986.
Following my discharge in 1986, I went on to work for over
two decades as a physician assistant before retiring
prematurely due to complications of multiple sclerosis. As my
disease progressed, I began to experience significant
difficulties with mobility, fatigue, cognition, and bowel and
bladder dysfunction, among others.
Today, I rely upon a power wheelchair when out in the
community and a walker to ambulate for short distances at home.
Through conversations with fellow veterans, I learned that MS
was a medical condition that the VA recognized as a service-
connected disease, and with the assistance of Paralyzed
Veterans of America, of which I am a member, I was able to
successfully file a claim and am now rated 100 percent service
disabled due to MS. As my symptoms progressed, I began to rely
more on the assistance of my wife, Lisa. My MS can vary
dramatically.
Although most days are good days where I can function
fairly independently, when I have a flare or exacerbation, I
can become temporarily incapacitated. During these times, I
rely very heavily upon Lisa for assistance with a variety of
activities to include intermittent catheterization, transfers,
toileting, personal hygiene, dressing, and meal preparation. I
have had no fewer than three of these episodes already this
year.
Prior to leaving the workforce, Lisa had been working as a
case manager for Keystone Community Resources. Eventually, as
my condition deteriorated, Lisa decided to retire early from
her position at age 61 to be, or to become my full-time
caregiver.
Around this time, primarily through a process of self-
education and online resources, we learned of the VA's Program
of Comprehensive Assistance for Family Caregivers, the PCAFC.
We applied when eligibility open to veterans of all service
areas in October 2022. Unfortunately, our application was
denied.
As I understand it, we were denied due to the VA's
determination that I did not require assistance with the
performance of certain activities of daily living each time
that activity was performed, or that the level of assistance
did not "rise to the level required to participate in the
PCAFC."
This strict interpretation of the eligibility criteria by
the VA is of particular concern to veterans like myself with
medical conditions whose symptoms are highly variable and
unpredictable. Lisa was eventually enrolled into the Program of
General Caregiver Support Services, the PGCS.
However, this transition to the PGCS was not automatic, and
we went for some time thinking we were enrolled in the general
program, although we were not. One of the most valuable
benefits of the Program of Comprehensive Assistance is the
availability of medical insurance coverage for caregivers
through the Civilian Health and Medical Program of the
Department of Veterans Affairs, CHAMPVA.
CHAMPVA was the only way that we could afford for Lisa to
retire early. Lisa qualified for coverage due to my permanent
and total disability rating, so we did not have to rely upon
the PCAFC for this benefit.
The Program of General Caregiver Support Services offers
fewer benefits than the PCAFC, but one significant benefit it
does offer is respite care. We utilize this benefit when Lisa
underwent surgery.
Staff at the Wilkes-Barre VA arranged for me to be admitted
to the Community Living Center for three weeks while Lisa
recovered from her surgery. Lisa knew that regardless of what
was happening with my health, I was being cared for so that she
could focus on her recovery.
I can't emphasize enough how important this valuable--I
should say the valuable--how valuable the respite care benefit
was to our family, and it is comforting to know that it will be
there if we need it again in the future.
Throughout this journey, our goal has been to create an
environment that allows me to live in our home as long as
possible, and to avoid the need for long-term care.
Participation in VA's caregiver programs helps us to achieve
that goal.
The reality is that my current level of disability is such
that I am no longer able to live independently and would
require placement in an assisted living facility were it not
for Lisa's efforts. I would like to make it clear that Lisa and
I remain very grateful for all the benefits that we have
received and continue to receive.
To show my gratitude, I currently serve as a Redcoat
Ambassador at the Wilkes-Barre VA Medical Center. By
volunteering, I can help other veterans connect to and navigate
services more seamlessly and give back to the organization that
has done so much for me.
The system is not perfect, however, and there will always
be room for improvement. I encourage the Committees to work
with the VA to one, ensure a more seamless transition to the
PGCS following denial of the PCAFC. Two, to better communicate
resources and benefits available to veterans, and three, value
the work of caregivers by passing legislation which would give
Social Security credit to caregivers who have left the
workforce prematurely to care for their loved ones.
I thank you for this opportunity to share our experiences
and look forward to answering any questions that you may have.
The Chairman. Mr. Townsend, thanks for your testimony. We
are grateful that you are here. I will turn next to Chairman
Tester for his introduction, and then we will alternate. Why
don't we do the introductions first, and then we will turn to
our next witness for testimony. Chairman Tester.
Chairman Tester. Our next witness is Hannah Nieskens.
Hannah is, as I said in my opening statement, joining us from
Cardwell, Montana. One of the most beautiful places on Earth, I
might add.
Her husband sustained traumatic brain injury while serving
in Iraq, and she serves as his caregiver full-time. She is an
Elizabeth Dole Foundation alumna and is an advocate and
spokesperson about mental health issues associated with brain
injuries.
I just want to say, Hannah, it is not a short trip from
Montana to Washington, DC, and thank you for being here.
The Chairman. Thank you, Chairman Tester. Our third witness
is Andrea Sawyer. Andrea is an advocacy navigator for the
Quality of Life Foundation's Wounded Veteran Family Care
Program.
After her husband sustained injuries in Iraq, she became
his caregiver and an advocate for those other wounded warrior
families. We want to thank you for being here today and sharing
your experiences with us.
I will turn next to Ranking Member Scott, I guess I can
call you that today, for the next introduction.
Senator Rick Scott. I have the privilege of introducing
Fred Sganga, the Executive Director of the Long Island State
Veterans Home at Stony Brook University, a 350-bed skilled
nursing facility serving honorably discharged veterans and
their families.
Fred also serves as the first Vice President for the
National Association of State Veterans Homes, as a Board Member
of the National Council of Certified Dementia Practitioners.
Thanks for being here.
The Chairman. Our fourth and final witness is Ms. Meredith
Beck. Meredith is the National Policy Director for the
Elizabeth Dole Foundation. She has dedicated over 20 years to
the veteran caregiver in military communities.
We appreciate you being with us today. We will turn for
testimony to Ms. Nieskens.
STATEMENT OF HANNAH NIESKENS, CAREGIVER OF
POST-9/11 VETERAN, CARDWELL, MONTANA
Ms. Nieskens. Chairman Casey and Tester, Ranking Members
Moran and Scott, and distinguished members of the Committee,
thank you for allowing me to testify today. My name is Hannah
Nieskens and I have been married to my husband, Kelly, for 20
years.
For 18 and a half of those years, I have also been his
caregiver. In 2005, Kelly was a 23-year-old Montana Guardsman
activated to Army infantrymen deployed to forward Operating
Base McHenry in Hawija, Iraq.
On May 4th, 2005, during a routine patrol, Kelly's Humvee
was struck by a large IED. This explosion, the fifth roadside
bomb to hit his vehicle since his arrival in November, left the
Humvee disabled in an 11-foot wide crater and knocked the squad
members, including Kelly, unconscious.
Upon regaining consciousness and exiting the vehicle, they
came under heavy sniper fire. Kelly was struck by a large
caliber rifle round that traveled through his ribs, hit his
armored plates, and ricocheted multiple times through his torso
before lodging near his spine. He survived thanks to the
extraordinary efforts of medics, doctors, and the E-VAC team.
Upon returning to civilian life, Kelly faced numerous
physical limitations. He had mobility issues caused by
traumatically herniated discs, as well as nerve damage, pain,
and neurogenic bowels caused by scar tissue around his spine
and intestines. He suffered from migraines, seizures, and
hearing loss. His cognitive impairments, including problems
with executive functioning, memory deficits, and mood
dysregulation also posed significant challenges.
In 2016, after a decade of limited success with medications
prescribed to treat PTSD, an MRI performed through UCLA's
Operation Mend Program revealed 12 lesions on Kelly's brain,
some as large as a dime, confirming a significant TBI for which
both proper treatment and benefits had been delayed.
Throughout the past 12 years, the VA's Program of
Comprehensive Assistance for Family Caregivers, the PCAFC, has
been an invaluable resource for me as I navigated the
complexities of Kelly's care and providing me training and
support. In 2021, we were subjected to a grueling reassessment
process for PCAFC eligibility.
During a nearly two-hour virtual appointment with a
contracted occupational therapist, Kelly and I had to painfully
recount every limitation he faces. I had to quantify everything
I do as a caregiver, which after two decades of caregiving is
difficult when those caregiving tasks are so integrated into
our daily life.
The resulting report was incomplete and inaccurate, missing
critical information and VA disability ratings. Despite efforts
by the VA staff and me to correct these errors before review,
not all were corrected. The reassessment outcome was that
Kelly, and I did not meet eligibility criteria, and I was
dismissed from the program.
The decision highlighted several issues. Significant
discrepancies exist between the Veterans Benefits
Administration and Veterans Health Administration records,
leading to incomplete or incorrect ratings in disability
information submitted in reassessment reports.
For example, Kelly's VBA rated disability of status post
through and through gunshot wound injury coded with VBA
diagnostic code for muscle injuries due to wounds caused by
gunshots or other missiles was recorded in his VHA records as
superficial scars and back muscle impairment, as there was no
equivalent diagnostic code in the VHA medical record system.
His VBA rating for neurogenic bowl was recorded in the VHA
system as irritable colon. Perhaps more importantly, his 70
percent rating for his TBI was completely missing in the VHA
record as a rated service-connected disability.
The reassessment process placed undue emotional strain and
stress on us, and I believe reassessment should occur only when
a veteran's needs change significantly. Additionally, veterans
with specific VBA ratings such as incompetency, aid in
attendance, those should have presumptive eligibility for
caregiving.
It was also apparent that veterans with stable needs, or
those receiving private care, were disadvantaged in
reassessments due to fewer VHA medical records in the months
preceding the evaluation.
Stable needs does not equate to insignificant needs.
Furthermore, veterans who reside in areas with limited access
to specialists, such as where we reside in rural Montana, were
penalized due to access issues as they do not receive routine,
comprehensive evaluations involving multiple specialists.
This May marked 19 years since Kelly's injury. Over these
years, I have learned that aging significantly amplifies the
challenges faced by people with disabilities. Withdrawing
support for disabled veterans with high needs and their
caregivers is incomprehensible.
As the brain and body age, the need for consistent and
comprehensive care for our veterans only intensifies. Removing
caregivers from PCAFC could lead them to seek more expensive
care options for their veterans, including home health aides
through Medicare or the VA Programs.
Utilizing home health aides instead of caregivers
exacerbates the significant nationwide shortage of home health
aides. In addition, the availability of home health aides,
especially in rural areas like our small Montana town which has
a population of 68, is none too few.
Thank you for allowing me to share my story and the
challenges we face. I appreciate your commitment to improving
the lives of veterans and their caregivers. I am happy to
answer any questions you may have.
The Chairman. Ms. Nieskens, thank you for being here with
us today, and thanks for traveling to be here. It is a long
distance and grateful to have the benefit of your family's
story. Next, Ms. Sawyer.
STATEMENT OF ANDREA SAWYER, NATIONAL ADVOCACY
DIRECTOR, QUALITY-OF-LIFE FOUNDATION'S
WOUNDED VETERAN FAMILY CARE PROGRAM,
WINSTON-SALEM, NORTH CAROLINA
Ms. Sawyer. Chairman Tester and Casey, Ranking Members
Moran and Scott, and members of the Committee, thank you for
holding this hearing.
I am the Advocacy Director for the Quality of Life
Foundation which serves caregivers of the seriously injured
veterans. We create educational resources surrounding PCAFC and
are one of the few organizations that assist with clinical
appeals for PCAFC. Over the years, legislation and policy
surrounding caregivers has evolved.
The original legislation created the Caregiver Support
Program for post 9/11 Veterans. Post 9/11 Veterans accepted
into PCAFC under this regulation are called legacy caregivers.
The Mission Act of 2018 expanded eligibility to PCAFC to
veterans of previous generations. The VA drafted new
regulations in 2020.
By March 2022, there was a high denial rate for eligible
applicants from previous generations, around 70 percent, and
legacy review denials were around 80 percent. VA paused legacy
reassessments in March 2022.
Since then, VACO has rewritten the regulation, but no new
regulation has been published. After the March 2022 SVAC
hearing on PCAFC, VACO held collaborative sessions with VSOs to
discuss what we saw as the problems with the regulation.
However, in the fall of 2022, the VA Office of General
Counsel stopped these conversations and declared VA within the
confines of rulemaking. Since that time, VSOs have been given
no guidance on what will be in the new regulation for the
program.
We ask the Committees to work with VA and stakeholder
organizations on the following items. Congress needs to clarify
that the mission of PCAFC is to recognize the sacrifice of
caregivers providing services for their seriously injured
veterans.
Services so that in the absence of a family caregiver,
would be required to be provided by the VA. Remind VA that the
Caregiver Support Program was intended for the seriously
injured, not the severely injured.
Codify the activities of daily living, and supervision
protection and instruction needs should only require regular
assistance so that veterans are not denied PCAFC for attempting
any level of independence within the areas in which they need
assistance.
Require that all veterans medical providers give input on a
veteran's application for PCAFC, and remove the language in the
statute that states, to the maximum extent possible, when
requiring such input.
Require VHA to honor its duty to assist, to collect outside
medical records. Create a pathway to advocacy to require VA to
develop a program to allow VSOs to navigate the Veterans Health
Administration on behalf of veterans and caregivers.
Mandate that those veterans and caregivers needing
additional assistance beyond PCAFC are allowed to be presented
with all of their potential options for care. All of these
items are in the Senator Elizabeth Dole 21st Century Veterans
Health Care and Benefits Improvement Act, as well as listed
between, the Elizabeth Dole Home Care Act and Senator Tester's
Care Act.
Examine caregivers' financial security for post caregiving.
Senate Bill 3885, the Veteran Caregiver Reeducation,
Reemployment, and Retirement Act would create pathways for
caregivers to reenter the workplace and study, allowing them to
contribute to retirement accounts and Social Security so that
they are not destitute in their later years.
When testifying before Congress, then VA Secretary Shulkin
said that VA wanted to change PCAFC to align it with other VA
programs. One lawmaker at a time responded, I am concerned that
the VA may attempt to justify changes to the program at the
expense of our most vulnerable veterans, rather than working to
expand the program. This is exactly what has happened.
VA made the cheaper to run PCAFC harder to get into than
the more expensive geriatrics and extended care programs. A
PCAFC caregiver is paid between $8.60 an hour to $13.86 an
hour. VA reimbursement rates for home health aides ranged from
$31 an hour to $81 an hour.
We are simply asking you to restore PCAFC to one that
supports seriously injured veterans who have a need for
assistance on a regular basis. Allowing family caregivers to
supply this care in the home has proven to have better health
outcomes for veterans, as well as cost savings for the
government.
By passing the Senator Elizabeth Dole 21st Century Veterans
Health Care and Benefits Improvement Act, and the Veteran
Caregiver Reeducation, Reemployment, and Retirement Act,
Congress would reinforce support of veterans and their family
caregivers, and veterans' desire to age in place at home.
Veterans have given their all to defend America. Shouldn't
we honor their right to age in place, at home, with the
caregivers of their choice? The Quality of Life Foundation
thanks you for holding this hearing, and we look forward to
answering any questions you may have.
The Chairman. Ms. Sawyer, thank you for your testimony. We
are grateful you are here. Next, Mr. Sganga.
STATEMENT OF FRED SGANGA MPH, FACHE, LNHA,
LEGISLATIVE DIRECTOR, NATIONAL ASSOCIATION OF
STATE VETERANS HOMES, LONG ISLAND, NEW YORK
Mr. Sganga. Chairman Casey and Tester, Ranking Members
Scott and Moran, and members of the Committees, thank you for
inviting the National Association of State Veterans Homes,
better known as NASVH, to testify on ways to improve and expand
support for aging veterans and their caregivers.
As you know, NASVH is an all-volunteer organization
representing the interests of all 165 state veterans homes,
which combined operate 158 skilled nursing care programs, 47
domiciliary programs, three adult day health care, or ADHC
programs.
I am currently the Legislative Officer and past President
of NASVH. However, my full-time job as Executive Director of
the Long Island State Veterans Home at Stony Brook University,
a 340 bed skilled nursing facility serving honorably discharged
veterans and their families.
Mr. Chairman, state veterans homes provide approximately
half of all federally supported institutional long-term care
for veterans, yet we receive less than 20 percent of the VA's
total nursing home care budget. It is clear that the State Home
Partnership provides a tremendous value for VA by leveraging
matching State funding for the benefit of all the veterans we
serve.
Although the veteran population is projected to decline in
future years, there will always be significant numbers of
veterans who will need traditional nursing home care. While we
agree that VA should continue to expand home and community-
based care, it should be an in addition to not a subtraction
from facility based care.
One of the most promising areas to expand home based care
is through the stay-at-home adult day health care programs,
which helps to maximize the veteran's independence and enhance
their quality of life, as well as provide much needed respite
for the family caregivers.
The Long Island State Veterans Home operates a 40-slot
medical model adult day health care program serving 75
veterans, six days a week, Monday through Saturday. We provide
them with a full array of clinical services offered at our
skilled nursing facility, including physical, occupational, and
speech therapies, nutritional counseling, meals, recreational
therapy, as well as things like bathing, grooming, and hair
care.
We help stabilize chronic medical conditions, reduce
emergency room visits and potential hospitalizations, delay or
prevent nursing home placement, and provide significant respite
for caregivers. In fact, we can save a caregiver multiple trips
it would take to provide all the services that we are able to
provide in one single visit at the state veterans Home.
Adult day health care programs can be a critical lifeline
for both veterans and their caregivers, such as Colonel Mike
Grable and his wife, Jeannine. After graduating West Point and
having a 27-year military career, Mike had a severe stroke, and
for the next two years he required hospital care.
He faced the knowledge that he would need significant
physical therapy and extensive support for the rest of his
life. Fortunately, we were able to offer Mike the option of
enrolling in our adult day health care program at the Long
Island State Veterans Home.
Today, he receives the intensive care and support he
requires five days a week, while Jeannine, his spouse, was able
to return to work as a school nurse, secured in the knowledge
that her loved one is in good hands during the day and returns
home to her every evening.
Mr. Chairman, the biggest obstacle to States opening new
adult day health care programs is the construction or
modification of a facility. Unfortunately, current VA
regulations only allow existing adult day health care programs
to apply for construction grants.
We urge Congress to enact legislation to allow State homes'
construction grant program to be used to open new adult day
health care programs. In addition, we urge you to work with VA
so we can open satellite adult day health care programs that
could offer life changing service as an option to thousands of
additional veterans and their family caregivers.
NASVH also recommends that Congress create pilot programs
to explore new arrangements for providing integrated home and
community-based programs through and in partnership with the
state Veterans Home Program.
For example, when I was forced to suspend my adult health
care program during the COVID-19 pandemic, we were able to
quickly pivot to an innovative program that supported veterans
at home by providing meals at home, PPE, telehealth, and home
care visits.
Finally, I want to thank Senators Tester and Moran for
introducing legislation to create a pilot program to provide
assisted living care for veterans, which includes state
veterans homes. Mr. Chairman, state veterans homes can and must
play a greater role in meeting the needs of aging veterans and
their caregivers in partnership with the VA and other Federal
agencies.
NASVH looks forward to continuing to work with you to
ensure that our veterans have greater access to a full spectrum
of long-term care options, whether at home or in the State
Veterans Home Program.
That concludes my statement, and I would be pleased to
answer any and all questions that the members of the Committees
may have. Thank you so much.
The Chairman. Mr. Sganga, thank you for your testimony. We
will conclude with Ms. Beck.
STATEMENT OF MEREDITH BECK, NATIONAL POLICY DIREC-
TOR, ELIZABETH DOLE FOUNDATION, WASHINGTON, D.C.
Ms. Beck. Thank you. Chairman Casey and Tester, Ranking
Members Scott and Moran, and members of the Committee, thank
you for the opportunity to testify today.
My name is Meredith Beck, and I am the Senior Policy
Advisor for the Elizabeth Dole Foundation, a national nonprofit
whose mission it is to strengthen, empower, and support
America's military and veteran caregivers.
By working with these individuals every day, EDF is keenly
aware of the challenges, issues, and remarkable strengths of
the community we are honored to serve. While we have outlined
additional issues for consideration here in our written
testimony, we first want to focus on the urgency of the passage
of H.R. 8371, the Senator Elizabeth Dole 21st Century Veterans
Health Care and Benefits Improvement Act, mentioned previously.
Clearly and without hesitation, the number one priority of
the Elizabeth Dole Foundation is the immediate passage of this
legislation. It is not an exaggeration to say that we hear from
veterans and caregivers every day who are desperate for the
support provided by the provisions in this bill.
Every day we wait, their struggle continues. I will speak
more about this legislation later in the statement. Regarding
VA's Program of Comprehensive Assistance for Family Caregivers,
it remains a significant concern among all generations of
veteran caregivers.
We wish to strongly align ourselves with the comments and
recommendations made by our partner, the Quality of Life
Foundation, who has clearly articulated the program's current
challenges in their written testimony.
EDF is a proud--is proud to sponsor the vital specialized
clinical appeals work done by QoL. With respect to the
anticipated PCAFC regulations outlining new eligibility
requirements, EDF notes that the legacy caregiver cohort yet
again faces an uncertain future.
Many of these caregivers have endured multiple pauses,
regulation and leadership changes, and a lack of previous
program standardization. The emotional toil and financial
uncertainty caused by programmatic instability have weighed
heavily on caregivers and veterans alike, as outlined by
Hannah.
Therefore, EDF asked Congress to work with relevant veteran
service organizations to consider grandfathering this
population, except in cases of fraud, waste, or abuse. This
would allow the Caregiver Support Program to focus on its
mission of supporting all generations, rather than continuing
this years? long division within the veteran caregiving
community.
We would like to commend CSP for their efforts to increase
the use of respite services and the availability of mental
health support for veteran caregivers enrolled in PCAFC. This
has served as a lifeline for many who have previously struggle
without access to care. Therefore, we encourage Congress to
broaden access to mental health services to include those
enrolled in the Program of General Caregiver Support Services.
In addition to CSP, VA has many programs that, when
accessed, benefit veteran caregivers. Where available, the
Veteran Directed Program, for example, has high satisfaction
rates across the country.
Unfortunately, despite being created more than 16 years ago
and its demonstrated success, Veteran Directed is still not
available in every VA medical center. For example, Mary Ward, a
Dole caregiver fellow, cares for Tom, her 100 percent service
disabled husband and 14 year ALS patient who receives care at
the Durham VA.
In 2019, almost five years ago, Mary found out another high
need veteran in the area was enrolled in Veteran Directed and
began the process of trying to get Tom enrolled. During the
intervening years, she has been told repeatedly the program is
still unavailable in Durham, again, despite knowing another
veteran in the program.
After significant effort on Mary's part, an intervention
from EDF, the VA reversed course and Mary was told recently
that they would try to enroll Tom. If enrolled, Mary will be
able to hire her own familiar home health aides and respite
care support to ensure they are meeting Tom's significant
needs.
This process should not and cannot be this difficult for
veterans and caregivers. As a result of situations like Mary's
and Tom's. Ranking Member Moran was joined by Chairman Tester
and others to introduce S. 141, the Elizabeth Dole Home Care
Act.
In addition to mandating that every VA medical center
provide the Veteran Directed Program, the legislation takes a
holistic approach to ensuring this and other relevant programs
are offered nationwide are appropriately staffed and
communicate it to caregivers.
Most notably, the legislation increases expenditure cap for
non-institutional care. This would allow the most vulnerable
veterans and caregivers the support they need to stay in their
homes. Fellow Laura Gary, from Austin, Texas, who is present
today in this hearing, cared for her 100 percent service-
disabled husband Tom until his death in 2022.
Because of the mandated cap, Laura constantly had to fight
with the VA to get the appropriate support so Tom could
continue to enjoy movie nights with the family, opening gifts
on Christmas morning, and even their son's high school
graduation, which happened in their living room so that Tom
could attend comfortably, all of which he would have missed if
you were in the closest facility two hours away.
It was Tom's greatest wish to be home with his family, and
Laura fought every day until his death to make that possible.
Eventually, this legislation, which enjoys broad bipartisan
support in both houses of Congress, was included in the
recently introduced and the previously mentioned H.R. 8371.
This overall package includes numerous provisions designed
to benefit veterans and caregivers. Despite strong support from
the Chairman and Ranking Members of the Senate Veterans Affairs
Committee, as well as the Chairman of the House Committee, all
major veterans service organizations, and other advocacy
groups, this legislation has seemingly fallen victim to the
politics of the day and has been plagued by mischaracterization
of its provisions.
While caregivers and veterans still face significant
challenges today, many can be addressed through continued
oversight and the legislative initiatives mentioned in our
written and oral statements.
Therefore, EDF calls on Congress to come together, treat
H.R. 8371 with the respect and urgency it deserves, and pass it
without delay. Veterans and caregivers simply cannot wait any
longer for this lifesaving--and lifesaving provisions. Thank
you, Mr. Chairman, and we look forward to your questions.
The Chairman. Ms. Beck, thank you for your testimony. Thank
you to all of our witnesses. We will turn to questions. I will
start.
Mr. Townsend, I am just grateful you are here and
representing, in essence, the people of Pennsylvania and
veterans. We appreciate your service in the United States Army,
and I want to thank you for sharing the experiences that you
have had and offering insights into how you and Lisa have
navigated VA caregiving, both services and supports.
You shared that after an infection during an overseas tour
in South Korea, you contracted a virus that is known to cause a
progressive form of multiple sclerosis in some people.
Unfortunately, you are now living with the daily challenges
associated with MS.
After a long battle with the VA, you were eventually deemed
to have a 100 percent service-connected disability. Like so
many others, you have good days and bad days. Even on your good
days, you still require some level of assistance with your
activities of daily living.
You shared that you applied for the Program of
Comprehensive Assistance to Family Caregivers and were denied.
How did this make you feel? What were you thinking when that
determination was made? And do you feel that the VA's
assessment adequately considered your needs?
Mr. Townsend. Clearly, we were disappointed when we
received the determination. It is certainly our opinion that
VA's current interpretation of the eligibility criteria
eliminates many veterans like myself from participating in
programs like the comprehensive program in particular, simply
by not requiring assistance with certain activities of daily
living each time that activity is performed
I clearly think there is room for improvement, and I think
that was summarized best by Ms. Sawyer when she recommended the
change to requiring regular assistance rather than assistance
every single time a veteran performs that particular activity
of daily living.
The Chairman. Thanks very much. I will turn next to Ms.
Nieskens. You as well shared your own story and that of your
husband, and the work you have done as a caregiver.
In your testimony, you told us that professional home care
workers are an essential part of your husband's care team and
your support team. You also told us it is often hard to find
and keep these workers.
We hear about that a lot. This is a story that I hear all
too frequently back home, and we hear it in Washington as well,
that it really is a care crisis across the board, not just in
this context, but in the context of children and seniors and
veterans as well.
I have introduced several bills to improve both recruitment
and retention of direct care workers. These bills would benefit
older adults and people with disabilities, and we also support
the family caregivers who are left with little support or
without access to the services.
I would ask you to tell us what it means for you and your
family when you are not able to find a home care worker. What
steps can we take here in the Senate to make sure that a stable
and qualified workforce is there for you and your family?
Ms. Nieskens. Yes. The availability of home health aides is
there is, as everyone here knows I believe, there is a
nationwide shortage. I do believe the PCAFC helps to alleviate
that burden by allowing family members to fill that gap when
those HHAs aren't able to be found.
In addition, I think it is worth mentioning that the median
wage for a home health aide in the United States is somewhere
between $13 and $14 an hour.
When you consider what that requires for someone to come to
my home, the nearest metropolitan area to Cardwell is Butte,
Montana, which has roughly 35,000 people, so that is probably
where the home health aide would come from.
They would have to commute 40 miles over the continental
divide, over a very large pass in the middle of winter to come
to my home to provide health aide services. The likelihood of
finding someone who is willing to do that for $13.50 an hour is
just slim to none.
I do believe that the PCAFC helps to alleviate those needs
by allowing people that are already in the recipient's home or
immediate community to fill those needs.
The Chairman. Thanks very much. I will turn next to Senator
Scott.
Senator Rick Scott. Thank you, Chair. Mr. Sganga, how does
your facility assist veterans and their caregivers when the
veteran wants to remain in the home, but still need some
additional support?
Mr. Sganga. Our adult day health care program is a
phenomenal program. It allows for the veteran to keep his or
her own physician, whether they be with VA or whether they be
in the private community.
We think we do provide a tremendous service to these
veterans six days a week. I would like to give you an example,
Senator Scott. When the veteran is in our adult day health care
program, it is a six-hour visit. They arrive at 9:00 a.m., and
they depart around 3:00 p.m.. During the course of that time,
we can get a lot done for that veteran.
Think about someone who is caring for their elderly parent
or grandparent who is a veteran. While they are at the home,
they can receive phlebotomy because the doctor ordered a blood
test.
They can receive a simple X-ray or ultrasound. They can get
their teeth examined and cleaned. They can get their eyes
checked by our optometrist. They can receive podiatric care,
and even receive physical therapy, occupational therapy, and
speech therapy. Maybe their hearing aid needs a battery change.
They can even get a haircut. What I just said to you, I
just saved the caregiver about eleven trips in the community.
That is what we tend to do in the State Veterans Home Program
and our medical model Adult Day Health Care Program.
We are keeping veterans out of the emergency room, avoiding
hospitalization, and we are certainly delaying placement into
skilled nursing facilities. Thank you.
Senator Rick Scott. Thanks for what you do. Ms. Sawyer,
what is the biggest challenge for caregivers in accessing
benefits from the VA?
Ms. Sawyer. I am going to assume you mean caregiver
benefits, which are our actually--caregiver benefits actually
fall on the health care side, and some of the biggest problems
with those really have to do with the evaluation itself.
I would tell you that the law itself doesn't have many
problems. The regulation itself has many problems, the
implementing regulation, and one of those problems is the
language that VA created around each and every time with ADL
assistance. It prevents a veteran from having--showing any
independence at all.
Should they be able to toilet by themselves once in the
entire six months, that prevents them from being eligible for
each and every--for ADL assistance, for that ADL because it
doesn't meet the standard of each and every time. One of their
requests has been that the regulation be changed from each and
every time.
However, each and every time is actually in the regulation,
not the law, but it was upheld by the courts. Because we have
seen VA change this regulation multiple times, we have actually
asked that Congress codify that it be regular instruction
instead of--instead of how it is broadly worded in the law now.
For supervision, protection, and instruction, that standard was
also continuous daily care.
A lawsuit, the veteran lawyer lawsuit actually overturned
that and created that--said that regular instruction, forced it
back into regular instruction, which was the standard in the
law. We would ask that that once again be codified within
statute so that VA cannot make that change again regulatory.
There is also a standard that VA has put in the regulation
that in order to be the higher standard, that a veteran must be
unable to self-sustain in the community. We ask that Congress
make a little bit of change to that wording, even though it is
regulatory language, because currently VA employees don't
interpret that correctly.
We have asked it to be evaluated multiple times and what we
keep finding is that it continues to be the bane of everyone's
existence to get that to that higher level of acceptance. One
of the other problems is that folks don't know the options that
they have available to them.
If your family caregiver isn't able to perform those duties
or needs assistance because let's say you are a tracked and
vetted veteran who needs 24 hour a day care, your caregiver, it
is impossible for them to provide 168 hours of care per week.
The best thing to do would be to have VBC care, home health
aide, respite care, a combination of such for those hours.
What we have found is that there are matrixes that VA has
in place that govern the amount of hours that you have for GEC
programs. Then there are matrixes for the hours for PCAFC
programs, and then there are matrixes that govern how those
programs interact together. They, however, apply differently to
different generations of caregivers currently, and so, it is a
confusing maze as to what is available, and to top that all
off, those hours differ between different VISN or regional
medical communities within the VA.
To go back to an earlier question for just a second, when
someone was asking about caregiver wages, there is a mechanism
within the VA for your local VA to request--or VISN to request
an increase in home health care worker's reimbursement rates.
Most VAs, however, do not know how to engage that mechanism.
One way that you could eliminate or lower the shortage of
home health care workers is to increase that reimbursement
rates so that more people would be willing to take those jobs,
and if you look at the current reimbursement rates around VA,
in the State of Alabama, the current reimbursement rates are
$30.50 an hour--I am so sorry.
The Chairman. Ms. Sawyer--just wrap up on because we are
over time. I am sorry.
Ms. Sawyer. Yes, sorry.
The Chairman. Senator Scott, thank you.
Senator Rick Scott. Thank you.
The Chairman. We will turn next to Senator Murray.
Senator Murray. Well, thank you very much to our Chairmen
and Ranking Members for holding this really important hearing
today, and I appreciate the testimony from everyone. Mr.
Townsend, I want to particularly thank you.
Your story was my family story. My dad was a World War II
veteran diagnosed with MS when I was a young teenager, seven
kids in our family, and our family went through what your
family is. I want to thank you for your service and sacrifice
for our country.
I want to thank Lisa for what she, I know, does every
single day for your family as well and tell you that is why I
have worked so hard to get the Family Caregivers Act passed
personally because I know what so many people struggle with,
and it is a real challenge.
As Chairman of the Senate Veterans Committee at the time, I
worked really hard to implement it to make sure it actually was
in line with what our congressional intent was.
This hearing is really important as we evaluate it now, and
what all of you have said to us is really important. Mr.
Townsend, you answered Senator Casey a little bit, but just
tell me, while the VA continues its review now of this program,
what do you think we need to particularly focus on?
Mr. Townsend. Particularly with regard to eligibility for
the comprehensive program. Once again, I would go back to my
previous statement that the VA's current interpretation of the
eligibility criteria and requiring assistance with the
performance of activity--activities of daily living each time
that activity is performed is unrealistic, and as a result,
excludes a tremendous number of veterans and caregivers from
myself, from what otherwise is a very, very valuable resource,
a very valuable program.
Senator Murray. Yes, I appreciate that. I totally
understand that and that is really helpful, so again, thank
you. Thank you for being here and sharing your story, and for
what your family has done. I want to turn to Ms. Nieskens. Did
I say that correctly?
Ms. Nieskens. Nieskens.
Senator Murray. Nieskens, thank you. Thank you for what you
do for your husband and your family and your community and
everything in being a care giver.
I wanted to really ask you something that doesn't get
talked about a lot, and that is the high level of stress and
depression from caregivers, who I know it is especially true
for post 9/11 caregivers. Forty percent have met criteria for
major depressive disorder.
That is actually twice the amount as pre 911 caregivers and
four times the rate than that of non-caregivers. That is really
a heartbreaking statistic and I really think it is something we
need to focus on.
Can you talk a little bit about what services are currently
available for caregivers who need mental health treatment, and
what we need to do to really address that?
Ms. Nieskens. Yes. I agree that that is a startling
statistic. I think, you know, that is the reported statistic,
but in my experience just being in the caregiver community, I
think that the rate is actually higher than that.
One of the things that I think is so important about the
PCAFC is the support it does provide to caregivers. There are
community functions where they host abilities for caregivers to
actually interact with each other to meet other caregivers, and
that allows caregivers to feel less isolated.
Being, you know, a caregiver at a young age, I think is
something that most people don't expect. That greatly is in
contrast to people who are caring for someone who is geriatric,
and we certainly expect people of a certain age to have
mobility needs, or supervision, protection and instruction
needs.
However, to have to care for someone who is in their 20's
who has those same needs just is difficult when you are in your
20's yourself, so that certainly is kind of something that the
PCAFC does--you know, attempts to do is to support caregivers
in learning how to become a caregiver and to connect with each
other to provide educational resources.
There is also outside foundations like Quality of Life and
Elizabeth Dole Foundation, who also provide caregiver
communities and resources and educational calls and so on and
so forth for these caregivers.
Ultimately, they are really--I guess, something that Mr.
Townsend spoke to was the VA benefit that is allowable if you
are a caregiver through PCAFC would be your resource for
getting mental health therapy as a caregiver.
If you are just in the program of general care and you do
not have a 100 percent permanently and total disabled person,
you do not have access to that CHAMPVA, or perhaps that
insurance, that would allow you to seek those mental health
therapists.
Senator Murray. Thank you. Mr. Chairman, my time is up, but
I just want to also mention that something that I personally
know well is that 2.3 million children live in a household with
a disabled veteran.
They provide really unique challenges and responsibilities,
and Senator Boozman and I have a bill called the Helping Heroes
Act to help establish a new program to support kids who live
with a disabled veteran and give them the support they need.
I hope we all look at that as well, so thank you. Thank you
all very much.
The Chairman. Thank you, Senator Murray. We will turn next
to Senator Moran.
Senator Moran. Chairman, thank you. For the first time that
I know of, while we have had this joint meeting, and I would
say that our witnesses and their testimony are among the most
compelling of the many hearings that I have had with veteran
issues and aging issues. Thank you. Thank you.
I just want to comment, Mr. Sganga, that I share your view.
President Biden's most recent--excuse me, recent budget
submission is--requests $141 million for State Home
Construction Grant programs. The current list of projects that
is in waiting totals $1.2 billion.
This request barely scratches the surface, and I now face
this in my own State as we are waiting for new construction
project in Northeast Kansas. I just would highlight for the
Administration and for my colleagues, this not only delays the
care for veterans, but puts the State who is putting money into
this project in a difficult situation, planning and financing
the project.
Mr. Sganga, I am sure many of my colleagues will work to
find further resources beyond the President's request for
increases in funding of the State Home Construction Grant
program. Thank you for highlighting that.
Mr. Sganga. Thank you.
Senator Moran. Let me ask a couple of questions. Ms.
Sawyer, I appreciate you working closely with me and Senator
Sinema on the Veterans Caregiver Reeducation, Reemployment, and
Retirement Act.
Tell me why you think and tell my colleagues why you think
it is important for us to consider this legislation and what
impact it would have on caregivers' community.
Ms. Sawyer. Thank you, Senator. We appreciate your
involvement in creating that Act. It is certainly something
that has been a long time coming.
Most personal living caregivers are in situations where the
income in their home is unearned. If their veteran was injured
and medically retired, they may receive a 100 percent permanent
total VA pay and Social Security disability, as well as the
PCAFC caregiver stipend. All of that income is unearned.
That means caregivers cannot contribute to Social Security,
nor can they contribute to any kind of retirement account. That
leaves those caregivers in a very precarious financial State
for when their caregiving years and they reach retirement.
The Act, the Reeducation, Reemployment, and Retirement Act
that you and Senator Sinema introduced would allow--would study
whether or not caregivers would be allowed to contribute to
Social Security and their retirement accounts--whether there
would be a mechanism that could be created for that to take
place.
It would also allow caregivers who had to leave caregiving,
either because their veteran passed or they became unable to
care give, or their veteran recovered, or their veteran had to
go into a State home, it would give them $1,000 per caregiver
to renew their employment certifications that they lost due to
caregiving, and it would also offer them returnships, which
already exist for older Americans within the Department of
Labor.
If you have watched The Intern, the movie with Robert De
Niro and Anne Hathaway, that is a returnship where Robert De
Niro returns into the workplace. That would be the returnship
program--we are looking at caregivers, and so, it basically,
this bill actually creates a way to secure the financial
security for caregivers in their later ages, because as of
right now, there is no mechanism for them to be financially
secure. Once their veteran passes away, they are looking at
being financially destitute in their later years.
Senator Moran. Ms. Sawyer, thank you for highlighting that.
You are a more effective advocate than when I say those things,
and I appreciate you putting this into the record for all of us
to hear.
Ms. Beck, please give my regards to Senator Dole. We have
two Senators that Kansans, consider both of them Kansans, and
both Senators used their lives post-Senate career to make a
difference in lots of people's lives and particularly veterans.
I will be at the Eisenhower Presidential Library tomorrow as we
take a look at celebrating, recognizing the importance of D-Day
and those who served.
Certainly, Senator Bob Dole in his efforts to recognize
World War II Veterans on the National Mall, and Senator
Elizabeth Dole in her efforts to make sure that our veterans
are cared for correctly, and appropriately, and fully is
greatly appreciated in Kansas and across the country. One of
the things that--there is times that occur in which I just
think, how can this happen?
How can--somebody is bringing me a problem from their
veteran perspective and your reaction is, this can't be true.
What is going on here? One of them is the dismissal of legacy
participants in the caregiver program. It is on pause. We are
all pleased about that, but would you highlight, Ms. Beck, that
this position of being in no man's land, no person's land in
which no answers come, and we just keep waiting?
Ms. Beck. Senator, thank you for that question. I decided a
long time ago that the first time--the first time I stop
saying, why is this happening, was the first time I shouldn't
be doing this anymore.
I think Hannah's story probably explains it best of the
emotional, financial uncertainty that has gone along with this
program for that legacy cohort of caregivers. There are
currently 14,000, approximately 14,000 individuals who are
considered as part of that legacy cohort, and that number is
dwindling every day due to, unfortunately, deaths, sometime
improvement, sometimes divorce, and so, that number is not
extraordinarily high and going down. The idea of offering
grandfathering to that population of people would be to
recognize that they have undergone so many different regulation
changes, as Ms. Sawyer pointed out.
That the program intents somehow shifted from seriously
injured to severely injured, and there is a significant concern
that a number of those legacy cohort who have been found
eligible time and time again would then be removed from the
program when the new regulations are issued, and so, in
recognition of that, and that that was something that the
Congress has repeatedly said it was not intended, then the idea
of grandfathering that population and moving forward and
allowing CSP to focus on actually supporting this population,
rather than a divided conversation of eligibility that has gone
on for years, would be in their best interest.
Senator Moran. Thank you.
Ms. Beck. Thank you.
The Chairman. Thank you, Senator Moran. Senator Tester.
Senator Tester. Thank you, Chairman Casey. I want to talk
about some timelines here to flesh out the way it used to be,
and the way it is now, and why. I am going to direct my
questions to you, Hannah.
I understand that the challenge here or the problem, from
my perspective, has been that there were regulations published
almost four years ago, July 31st, 2020, that went into effect
October 1st of 2020.
You have been taking care of your husband for nearly 20
years. Can you tell me what it was like before those
regulations went into effect?
Ms. Nieskens. Before the regulations went into effect, I
felt supported and I certainly felt like there was a mechanism
within the VA where if I needed additional case management or
support for Kelly's needs, I knew who to call and who to ask,
and I had assurances that I would be able to navigate his care
successfully.
Once those regulations passed, and we were dismissed from
the caregiver program, as Senator Moran expressed, we feel like
we are in a purgatory situation here where we just don't know
what the next iteration of these regulations will look like.
Senator Tester. For further explanation, a regulation was
put into effect October 1st of 2020. Nothing changed with your
husband. His needs remained the same and potentially even got
greater because they are getting older.
Ms. Nieskens. Correct.
Senator Tester. Yet, you were removed from the program
because of a reassessment?
Ms. Nieskens. That is correct.
Senator Tester. That reassessment was required by the new
regulation?
Ms. Nieskens. Yes, that is correct.
Senator Tester. Were you able to appeal that assessment?
Ms. Nieskens. Yes. We appealed and we received a letter
which basically stated that it was unnecessary to appeal
because currently everything was on pause. The entire program
was being put on pause due to----
Senator Tester. The pause wasn't pre-regulation. The pause
was post-regulation.
Ms. Nieskens. Correct.
Senator Tester. Okay. Tell me what that impact had on your
family, the impact of losing that certainty that the Caregiver
program gave you before October 1st of 2020.
Ms. Nieskens. Right.
Senator Tester. What impact did that have on your family?
What the impact did that have on you, and your husband, and
your children?
Ms. Nieskens. Right. Basically it creates a large sense of
uncertainty. What does the future look like? Because if this
resource for all of these caregivers, including myself, is
going away, what replaces it? I don't know. I don't have those
answers, and so, it becomes increasingly difficult to fathom
how to meet Kelly's needs in the future.
Senator Tester. Financially, what would it do to you?
Ms. Nieskens. That would mean that I would lose the
caregiver stipend, which means that a significant portion of
her income is simply going away.
Senator Tester. Thank you for that. It is my understanding
that the new regulations are there and just haven't been
released. That is correct. I see a head nod. That is good
enough. Thank you. I want to go over to you, Meredith.
Appreciate your comment that we have got some really good bills
that actually get things done and get hung up because of
politics of the day. You are spot on, and quite frankly, it
ain't right.
Good policy is good policy regardless of political party
and regardless of who is carrying it, and we ought to look at
it from that standpoint. I want you to take a moment to
summarize, because you are intimately familiar with the
Elizabeth Dole Home Care Act, and I want you to summarize and
particularly highlight why this bill is so important for our
Nation's caregivers.
If you could refer it back to some of the challenges that
Hannah just explained, that would be helpful.
Ms. Beck. Yes, sir. Just to be clear, do you prefer the
Elizabeth Dole Home Care Act and the package, or just the
Elizabeth Dole Home Care Act? Yes, sir.
Senator Tester. My mic works. Keep it simple.
Ms. Beck. The Elizabeth Dole Home Care Act, as I mentioned,
has probably most importantly for the most severely injured,
and most ill, is the provision on removal of the cap.
That is, we have got--I have caregivers who are watching
right now, who are waiting every single day to ensure that they
are able to get the services that they need in the home to keep
the veterans that they care for in their home.
Those are going to be the individuals who have long-term
ALS, MS, severe traumatic brain injuries, and without that
removal of that cap to, which everyone seems to agree including
the VA, that they will potentially have to move to a nursing
home because that cap prevents them from getting the care and
services inside their home.
Also included in the legislation is the requirement that
Veteran Directed program be within every VA medical facility
because that program in addition can actually help to support a
lot of those caregivers who may not qualify for PCAFC for one
reason or another because you are actually allowed to pay your
family caregiver under that program.
That is significantly helpful for those who care for an
individual who have cognitive disabilities or mental health
disabilities that at the moment may or may not qualify for
PCAFC and gives them the flexibility and control of who they
are hiring in their home because often veterans with those
conditions don't want somebody who is unfamiliar in their home,
and so, you are able to hire a friend or family to do that. The
other provisions in the legislation include mandating that the
other programs within the VA that provide those care services,
home health aides, home based primary care are mandated to stay
within the VA because while those are a little bit more widely
available than Veteran Directed, as we have seen in PCAFC,
there is a concern if it is not legislated, it can be taken
away.
Senator Tester. Thank you very much for that explanation
and I appreciate all of your testimonies.
The Chairman. Thank you, Chairman Tester. I will turn next
to Senator Ricketts.
Senator Ricketts. Great. Thank you very much, Mr. Chairman.
There are over 16.2 million veterans living in the U.S.,
including a 111,000 that are calling Nebraska home. These brave
women and men have made great sacrifices for our country when
they put on the uniform, and I am committed to making sure they
have got quality benefits and care that they have earned.
Now, that is why I introduced the Tax Cuts for Veterans
Act. The bill would make military retirement pay tax free at
the Federal level, just like we did it in Nebraska where we
made tax free. Furthermore, across the country, there are more
than 6.5 million veterans and military caregivers who provide
$14 billion in unpaid labor for America's wounded warriors
every year.
Family and others who provide care for veterans spend on
average $11,500 of their personal income in out-of-pocket
expenses and related to the caregiving of the veterans every
year, which is roughly about one and a half times the--higher
than what other family caregivers spend.
The U.S. Department of Veterans Affairs offers support and
resources for caregivers of veterans enrolled in VA health care
through the VA caregiver support program. This program provides
caregivers with the access to VA health benefit--or health care
benefits, caregiver education, financial aid, mental health
services, and up to 30 days respite care.
Only 34 percent of veterans have used their earned benefits
at VA healthcare. Ms. Sawyer, over 33 percent of Nebraskans
veterans live in rural areas that can create unique challenges
for those veterans and their caregivers.
Do the VA caregivers' programs offer any resources that
specifically help veterans and caregivers living in rural
communities? If so, how do they provide support that addresses
the unique challenges those veterans face?
Ms. Sawyer. Thank you for the question. In rural areas, as
with caregivers who are in urban areas and that can't get out
of the home, there is--or there are mental health programs that
are virtual programs that have been put in place by PCAFC. If
you are a member of the Program of Comprehensive Assistance for
Family Caregivers, you now have access to therapy virtually
through that PCAFC program.
You also have options for respite care, in-home or in
facility, if they can find a home health aide caregiver--that
being the concern. What I was saying earlier is in rural areas
where it is difficult to find a home health care workers, there
are mechanisms in place where a VA can raise that reimbursement
rate, which would make it more attractive and possibly make
health care workers more widely available in rural areas.
Because, as Hannah said, trying to get someone to come
across the continental divide for $13 an hour is rather
daunting. In South Dakota, they have managed to raise the
reimbursement rate to $85.05 an hour.
Where in Alabama, it is $30.50 an hour. If your VAs are
able to raise that reimbursement rate, you would have better
access to those home health care workers. Also, it is difficult
sometimes for caregivers and veterans to travel to VA
facilities, so certainly community care makes sense.
The concern then is, for the program of comprehensive
assistance, is that those records need to be able to get into
VA medical records, which is what we see is keeping people from
being accepted into the program. It is not that there is a lack
of a need for assistance from the--of the veteran. There is a
lack of evidence of a need of assistance, and that is partly
because those outside records never get into the VA, or their
practitioners aren't asked about the specific needs of the
veteran. What is examined in PCAFC, in that evaluation process
is not actually ever asked about during your yearly exam.
Your PCM never evaluates you for ADL or supervision and
protection needs. Those are usually done by specialists, and
most of the time you see your specialists in your community
rather than traveling 200 miles or 400 miles, in the case of
Hannah and her husband in Montana.
You have to have that mechanism to get those records in. At
Quality of Life, we actually issue a questionnaire to
specialists that would actually document those needs and then
have that submitted to the VA by the veteran and caregiver. One
of those things is really getting that documentation into the
VA.
Senator Ricketts. Is that really relying on the veterans
then for asking that, or is there another way to make sure that
that kind of information can be captured when they go see those
specialists?
Ms. Sawyer. There is a duty to assist that that exists
within VBA, and we have worked with Dr. Richardson and her team
to really train her team on duty to assist within VHA.
It would be helpful if Congress could codify duty to assist
in the Veterans Health Administration, which would mean that if
a veteran and caregiver identify that there are outside medical
records that need to be obtained for the evaluation process, it
is VA's responsibility to get those records so that they may be
considered in that process.
While Dr. Richardson has trained her staff to do that, it
is by sheer force of will and leadership power that she gets
her team to do that, but that actually doesn't necessarily
exist within VHA itself.
Senator Ricketts. Great. Thank you very much, Ms. Sawyer.
Thank you, Chairman.
The Chairman. Thank you, Senator Ricketts. We will turn
next to Senator King.
Senator King. Thank you, Mr. Chairman. There is an unspoken
theme to this hearing as it has unfolded, and that is
implementation is as important as vision. We deal in laws up
here, but the majority of what you have been talking about
today has been implementation of the laws.
We can pass great laws, but if they are not adequately
implemented, it ain't going to work, and one of the best
examples--Mr. Sganga, you may know about this. Three and a half
years ago, we passed a law about domiciliary care at state
veterans homes, and we are still waiting for the regulations
three and a half years later.
In the meantime, our veterans homes in Maine are losing
something like $3 million a year based upon the lack of having
this back payment and the implementation. Tomorrow is the
anniversary of D-Day, and I have mentioned this before in this
Committee, I like to remind people when they tell me how long
things are going to take, that Eisenhower retook Europe in 11
months.
We should not be waiting years for regulations to implement
the laws that we pass here, so I hope that can be a theme, Mr.
Chairman, of this Committee. Not that the VA is--they are bad
people, or they are not--they are trying not to enforce the
laws.
Somehow we have to break through the delays and the sort of
sometimes the nonsensical, such as what you endured Hannah,
implementation. Because one of the other themes here is home
care is, a, preferred, and b, cheaper.
We should be encouraging it. Mr. Townsend, I presume you
would rather be at home than in a hospital or a nursing home.
Mr. Townsend. That is absolutely correct.
Senator King. The care that you are receiving, even at an
adequate reimbursement rate, is still a lot cheaper than what
it would be in one of those institutions. Isn't that correct?
Mr. Townsend. That is also correct, sir.
Senator King. My mother used to use the term pennywise and
pound foolish. I guess it must be an English term. In our case,
it would be pennywise and dollar foolish. This is a case where
we are nickel and dimeing on what is a much, much lower cost
alternative. Is that not correct? This is the big picture as I
see it. Ms. Beck.
Ms. Beck. Yes, sir. It is--these are human beings, first of
all, and as you said, the care in the home is causing in most
cases better outcomes, whether better health outcomes or better
quality of life.
From the perspective of cost savings, the idea, as has been
pointed out previously, that the PCAFC program has higher
standards to get to become a part of, then the more expensive--
home health program.
Senator King. I appreciate that. I am going to cut you off
because----
Ms. Beck. Yes, sir.
Senator King [continuing]. we are out of time. I have got
this little digital thing that tells me how many seconds I have
left. A good--another example is, Mr. Sganga, the recent CMS
rules about staffing ratios. HRSA indicate by next year we will
have a 78,000-nurse shortage in this country, and yet CMS is
issuing rules for increasing staffing when there is nobody to
hire.
I know in our--in Maine, we have lost--we are losing four
nursing homes so far this year, one this week. We have lost 26
in the last 10 years because mostly lack of staff. These well-
meaning regulations, nobody is against adequate staffing
levels, but the well-meaning regulations will end up with less
care if we lose nursing home beds. Mr. Sganga, do you agree?
Mr. Sganga. Well, said, Senator King. I think it is a big
problem and something we should be looking at nationwide. We
think for just skilled nursing facilities alone, we are going
to be lacking about 102,000 registered nurses and certified
nursing assistants just to meet that----
Senator King. Just because CMS passes a regulation doesn't
mean those nurses are going to magically spring into existence.
Mr. Sganga. That is correct. That is correct.
Senator King. Let the record show that you said, well
stated, Mr. King.
I just want to emphasize that. This is a very serious
problem. I mean, we are losing a caregiver--and what compounds
is the caregivers who are staying are being burnt out because
they are having to work so many hours.
We really should be--CMS ought to really be talking about
how do we surge people into this industry not requiring
staffing levels that are going to end up with not lesser care,
but no care for veterans and elderly people throughout the
country.
Mr. Sganga. Just one quick example. During the COVID-19
pandemic, I lost 36 caregivers in a single day on September
21st--I am sorry, September 28th, 2021, and that was due to the
vaccine mandate. We had to think quick on our feet that the
Long Island State Veterans Home. We came up with a new
provider, caregiver title of unit assistant.
These are people who are not certified nursing assistants,
but can do many the tasks of the CNAs, with the exception of
toileting and bathing. It was great. It worked out well for us.
They made a little bit less than a certified nurse assistant,
and we found plenty of people to fill this particular role.
The sad part for us as an institution is that we got no
credit whatsoever from CMS in terms of the payroll based
journal and the fact that we had an alternate type of caregiver
to provide the care, to be the hands on, to do things like
feeding the residents, helping them get dressed, helping make
their beds, helping transfer them around the facility.
We were able, as a state veterans home program, to come up
with the bodies to provide the care, but sadly, CMS did not
recognize this kind of caregiver. When it came to those, the
metrics of providing certain amount of providers per resident,
they were not counted.
Senator King. I think we move CMS out of Washington into
Poughkeepsie or Bozeman, Montana or someplace so they know what
is actually going on the ground. Thank you, Mr. Chairman.
The Chairman. Thank you, Senator King. We will turn next to
Senator Hassan.
Senator Hassan. Thank you very much, Mr. Chair.
Thanks to you and Chairman Tester, and Ranking Members
Moran and Braun for this hearing. To all of our witnesses, not
only thank you for being here today, but thank you for the
extraordinary work you do in your advocacy, and not only for
our country's veterans, but for the people who take care of our
country's veterans. It is really important and critical work,
obviously.
Mr. Townsend, I just wanted to start with a question to
you, and I want to thank you for your service in the Army, for
your years of work as a physician's assistant, and for your
advocacy. The recent FAA Reauthorization Act that President
Biden signed into law included a provision that I authored that
will expand access to universal charging stations in airport
restrooms.
These changing stations will provide individuals who
experience disabilities and their caregivers with a safer and
more dignified travel experience. I want to extend a special
thank you to the Paralyzed Veterans of America and Disabled
American Veterans for their support of this provision.
They really helped get it across the finish line, but Mr.
Townsend, can you speak to the importance of making travel more
accessible for individuals experiencing disabilities, and how
it helps them participate more fully?
Mr. Townsend. With regard to travel, the primary obstacle
that I faced since I have become a full-time wheelchair user in
the community is the distance.
Senator Hassan. Yes.
Mr. Townsend. Since becoming a wheelchair user, I am
reluctant to consider flying.
Senator Hassan. Yes.
Mr. Townsend. Therefore, I only travel by ground. I have
heard the horror stories from many others about what has
happened to their wheelchairs during travel. I can't imagine
the frustration of getting to your destination, only to have
essentially your legs taken away from you, so.
Senator Hassan. No, I appreciate that, and that is another
issue that we are working on and try to address. I just think a
lot of people aren't aware that the lack of access to universal
changing rooms can be a real barrier for people with
disabilities and their caregivers.
Ms. Beck, I want to thank you for a lot of the work of the
Elizabeth Dole Foundation, and thank you for the Elizabeth Dole
Home Care Act, which I am a co-sponsor. I have been very proud
to work with you on.
In your testimony, you touched on the financial strains
experienced by caregivers, especially families of veterans who
aren't associated with the VA or who have difficulty accessing
VA programs.
The Credit for Caring Act, which has bipartisan support,
would help relieve some of these financial strains by providing
tax cuts to family caregivers who also hold down another job,
which is a pretty frequent situation. Can you discuss some of
the financial strains that caregivers might face and how these
costs impact them and the people who they care for?
Ms. Beck. Sure. Thank you very much. The--essentially it
would be two populations probably involved in that question,
and it would be those veterans who are associated with the VA
and those who are not.
For veterans who are associated with the VA, there are any
number of programs and services that could potentially
reimburse or pay for needed supplies. However, one, as we have
discussed earlier, accessing information about that, knowing
about that, having the time to be able to do that is incredibly
difficult, so veterans and caregivers often pay out of pocket,
even if they are associated with the VA for sometimes for
especially--something as large as specially adapted housing
modifications or something as small as Tylenol, Advil, a gauze,
anything else along those lines.
Outside--for those not affiliated with the VA, they would
obviously be then responsible for those out-of-pocket expenses
writ large, and so, we are very much strong supporters of S.
3702, that Credit for Caring Act because of those out-of-pocket
expenses that they have to pay for.
Senator Hassan. Well, I appreciate that. I also just want
to note that there are caregivers who work part time jobs as
opposed to full-time job, so they are earning less as they are
also trying to take on this additional work and these
additional expenses.
Last question, and it is for you again, Ms. Beck. It is
really important that we obviously support people with
disabilities in their homes and for being as independent as
they can be, and we have talked a lot today about the workforce
shortage here.
We face a shortage of professionals who provide critical
services for individuals with disabilities, including direct
support professionals who can assist with communication, daily
tasks, provide job support, and respite to family caregivers.
My colleagues and I have been working to make sure we have
the information we need to support these professionals in the
work they do. Most recently getting DOL to adopt a job category
for direct support professionals so we can actually track how
many of them we have. I just want my colleagues to know how
important these people are. I have an adult son with severe
disabilities.
We have been blessed with a direct support professional
who's been with him 35 of his 36 years, and it has just been
extraordinary. These are people who are creative, hardworking,
make a huge difference, can provide respite care, and can help
people be independent.
Ms. Beck, what else can Congress do to strengthen support
services for people with disabilities and the caregiving
workforce?
Ms. Beck. One, thank you for that legislation because we
have all talked about the shortage issues, and we can't do
anything about it until you actually have data that shows where
they are and what is necessary. Increasing those reimbursement
rates, as has been mentioned.
You know, a lot of these people will do this out of the
goodness of their hearts, but there are a lot of people who--
most people are going to need to be employed and paid at an
adequate rate in order to provide the service that is
necessary.
The reimbursement rates, as was mentioned earlier with
the--especially within the Department of Veterans Affairs and
the varying knowledge of the mechanisms by which you can
increase those reimbursement rates.
Because while certainly the Elizabeth Dole Foundation is
supporting family caregivers, they also rely on those direct
support professionals in order to provide the services that you
mentioned, and so, this workforce is incredibly important to us
as we are trying to make sure that everyone has the services
they need in order to stay in their homes.
Senator Hassan. Thank you very much. Thank you for your
indulgence, Mr. Chair.
The Chairman. Thank you, Senator Hassan. Next, Senator
Kelly.
Senator Kelly. Thank you, Mr. Chairman, and thank you to
all our witnesses for being here today. My first questions for
Ms. Sawyer.
Ms. Sawyer, one of the most sacred promises that our
country makes is to care for our servicemembers when they
return home, and I am committed to making sure that our country
keeps these promises, and that includes ensuring that our
veterans' family caregivers have the support they need to care
for their loved ones. I have heard from Arizona veteran
families that they were removed from the Program of
Comprehensive Assistance for Family Caregivers during the
expansion rollout.
They had previously qualified, in some cases for years, for
this program. While I am glad that the VA has suspended the
reassessments and the discharges for legacy participants, I am
troubled that some of the folks who are disqualified still do
not have an expedited appeals process.
This is an important issue that is impacting Arizona's
veterans and also their families. I have continued to urge the
VA to fix this. Ms. Sawyer, could you please share your
experience with the changes to this program, the program of
Comprehensive Assistance for Family Caregivers.
Ms. Sawyer. Thank you, Senator. In the beginning, when the
program was first created, the only appeals that were available
were clinical appeals, and they were governed under VA's
regular clinical appeal guidance.
When the new regulations were written for the Mission Act
in 2020, those appeals, clinical appeals shifted to the
centralized eligibility assessment team that was created. With
the Beaudette court decision, it opened up multiple avenue--
more avenues for appeal.
The VA was--VHA was forced to create supplemental claims,
higher level review claims, which all occur under VHA, and then
there was an avenue opened up for Board of Veterans appeals
claims.
None of those had existed prior to the Beaudette case.
Also, because decisions had been governed under regular
clinical appeals, clinical appeals in the VA did not--do not
require justification. They simply can be listed as approved or
denied.
In the--with the Beaudette decision, VA did undertake an
effort to do an eight-point letter so now we know----
Senator Kelly. Can you describe what the Beaudette decision
was?
Ms. Sawyer. Sure. The Beaudette decision was a court
decision that basically said--where basically a veteran and his
spouse sued the VA to say, you said we weren't eligible for the
program, but we don't really know why because the letter that
you sent us doesn't tell us why, and we don't have rights to
appeal that we would in other situations.
The Beaudette decision then created those extra avenues for
appeals, and it created the need for the eight-point letter.
The eight-point letter is a letter that a veteran gets that
is--basically mirrors a process that is within the VBA, or the
Veterans Benefits Administration, that explains exactly why a
veteran is denied.
With the setting up of the supplemental claims and higher
level reviews, this was something unique to VHA that they had
never done before, and so that's kind of what has taken so
long. Originally, VA had to completely set up a process--VHA
had to completely set up a process they had never been involved
in, and then they had to write regulations, write directives,
everything administrative the VA does.
Then they had to train a staff how to do that. In the
meantime, they were already accepting those appeals but weren't
able to act on them. It took them--they were accepting appeals
for between 12 and 18 months before they could actually act on
them. They are actually acting on them now for supplemental
claims and higher level reviews, and so, we are starting to see
some decisions come out of there. One of the things with
Quality of Life Foundation we do, though, is to say if you had
supplemental information that should have been available at the
time of your original denial, while we would urge you to go
ahead and submit a supplemental claim, we also want you to, if
you have been denied from the beginning, we want you to go
ahead and submit a new application using all of that evidence
so we can go ahead and get you in the program with that extra
information, while at the same time, your supplemental claim
runs, which would then if you were accepted under your new
application, you would be back paid from your supplemental
claim, from the approval of your new application back to your
date of your original application.
However, there is a little bit of a narrow window that if
that information that we consider supplemental should have been
available at your first review, you can actually file it as a
clinical appeal and have your appeal acted on--within 30 days
that would actually get you back paid to your original
application.
Recently we have just, at Quality of Life, had that happen
with a veteran. Actually, he was an Arizona veteran, and we got
him back paid all the way to his denial in 2021 because they
had never contacted his specialist.
Senator Kelly. Sorry, I am way over, but do you feel this
is moving in the right direction?
Ms. Sawyer. I feel it is moving in the right direction, but
slowly.
Senator Kelly. Okay. Thank you.
The Chairman. Thank you, Senator Kelly. Senator Warnock.
Senator Warnock. Thank you so very much, Chairman Casey.
Thanks to you and Senator Tester for holding this important
hearing today. First Lady Rosalynn Carter, a great Georgian,
used to say that there are only four kinds of people in the
world. She said that there are those who have been caregivers,
those who are currently caregivers, those who will be
caregivers, and those who will need caregivers.
Yet our caregiving infrastructure is falling short for too
many, including our veterans. The VA boasts generous caregiving
programs for veterans and their families. I am grateful for the
work that happens there, but two of our witnesses today
confronted challenges with one Federal program intended to
financially support caregivers of injured veterans.
The Program of Comprehensive Assistance for Family
Caregivers, or the PCAFC. Ms. Nieskens, I am deeply sorry to
hear about your husband's grueling experiences with the PCAFC
reassessment process. You are the human face of the public
policy issue that we are trying to address.
It is important that we are saying to the families that the
goal is the veterans in this work. How tell me, how can the VA
improve the reassessment process, so veterans won't have to
experience the turmoil you and Kelly faced?
Ms. Nieskens. The regulatory changes that were implemented,
which required ADL assistance each and every time. Supervision,
protection, and instruction assistance at a rate of continuous
daily care were exclusionary. Therefore, needs such as my
husband has for neurogenic bowel and seizure care and things
like that, while those are very serious and require constant
care, regular care, they are episodic.
Therefore because of that, the nature of the disability
itself, they were unable to meet the standard of each and every
time and continuous daily care. That language is problematic
and should be changed.
Senator Warnock. Thank you so much. Again, you are the
human face. It is a public policy. Regulations often don't
match where people actually live. We have to be very
intentional about getting it right.
Mr. Townsend, thank you for your service and for being here
today as a witness. Like Ms. Nieskens, you and your wife
encountered barriers to receiving caregiving support. Can you
talk about your experience getting connected to assistance
after the VA denied your application for PCAFC?
Mr. Townsend. After we were denied access to the
comprehensive program, fortunately we were still able to access
most of the benefits Lisa has since been enrolled in the
General Program of Caregiver Assistance.
We are able to participate in benefits such as respite
care. We really haven't had--put it this way, the main benefit
of the comprehensive program is the benefit--at least for me,
is the availability of the medical insurance coverage through
CHAMPVA. The other benefit, obviously, is the financial support
through the stipend.
We can live without the stipend. What made it possible for
my wife to retire early and become my full-time caregiver was
that availability of CHAMPVA. In our case, since we were denied
access through the comprehensive program, fortunately for us,
because of the 100 percent permanent and total nature of my
disability rating, we were able to access that benefit through
other means, not through the caregiver program itself.
Senator Warnock. You were not automatically connected to
the caregiver program?
Mr. Townsend. That is true, sir. We--it is interesting that
as we went through the process of the application of the
comprehensive program, in our meetings with, for example, the
social worker at the hospital, she explained to us that if we
were denied access to the comprehensive program, we still would
be able to access the benefits through the general program.
We assumed that that transition from the comprehensive
program to the general program would be almost automatic if we
were denied access to the comprehensive program. Come to find
out, that is not the case. It was only later, when I contacted
the staff at the VA in Wilkes-Barre, that we realized that Lisa
was not formally enrolled in the basic or general caregiver
program.
She is now, but that was not an automatic transition.
Whatever the Committees can do to work with the VA to ensure a
more seamless transition between the comprehensive program and
the general caregiver program, if you are denied access to the
comprehensive program, would be of tremendous benefit.
Senator Warnock. You both paint a picture of a fractured
system where the constituent parts do not talk seamlessly to
one another, and so clearly there is room for improvement in
addressing the need for continuity of care, making sure
veterans don't fall between the tracks.
Thank you so very much for your witness and your
testimony--I think, brings this kind of issue into clear focus
and helps us to see the work that we have got to do. Thank you
for your service.
The Chairman. Thank you, Senator Warnock. I will turn to
Senator Cassidy.
Senator Cassidy. Thank you all. You know, I am a physician.
You will see that reflected. You can tell that Warnock is a
pastor, he went over. You know what I am saying?
Senator Warnock. Everybody went over.
Senator Cassidy. Well maybe that is----
The Chairman. We had a lot of overs today.
Senator Cassidy. A lot of overs. That is good. It is an
important topic. I thank you for doing that. I am a physician,
Mr. Townsend, and I noted that you had said that in your
testimony--if people have already asked my questions, I
apologize. I have been running around.
This is my sixth thing I have done today. I apologize for
not hearing what their answers were, but you spoke about your
ineligibility for the Program of Comprehensive Assistance for
Family Caregivers because you are 100 percent service related
disability didn't require assistance each time the activity is
performed.
I am a physician, not a neurologist, but I remember from
med school that MS waxes and wanes, and so, there is other
conditions which wax and wane. Tell me, how has that played? Is
that still an issue? What is the way to approach the VA
regarding this?
Mr. Townsend. Thank you very much for that question. You
are absolutely correct that medical conditions like mine, like
multiple sclerosis is often associated with symptoms that tend
to wax and wane, can be severe on certain occasions and less
severe. That has certainly been my experience with the
condition.
I am confident, that there are many other, veterans out
there in similar circumstances. As we talked about earlier, the
VA's current requirement that the veteran require assistance
with the performance of certain activities of daily living each
time or every time that activity is performed is restrictive
and has excluded not only myself, but I am sure many other
veterans like me, from participation in this very valuable
program.
Senator Cassidy. Is there the solution to propose? Ms.
Sawyer, I see you nodding your head.
Ms. Sawyer. Yes, sir. One of the solutions would be that
you remove--that VA removes each and every time from the
language of the regulation. One of our requests has been that
Congress actually codify that it needs to be regular assistance
with ADLs, because it was--in the regulation, it was regular
assistance with the ADLs until VA reinterpreted the regulation.
Senator Cassidy. I see.
Ms. Sawyer. We would like--that is why we would like to ask
Congress to codify that language.
Senator Cassidy. Let me ask you, was there an issue with
fraud? Why did they reinterpret it?
Ms. Sawyer. VA made a move in 2017 to what they said was to
realign the program with other VA geriatrics and extended care
programs. Unfortunately, what they did was make this program
actually even harder to get into than those other programs.
There were actually not--there is this rampant rumor, an
anecdote that there is a lot of fraud within this program.
There has not been proven to be a lot of fraud within this
program. Has there been some? Sure. Just like you see in every
VA program. It is not rampant like it was--like it has been
suggested.
The one way that I have been--I would be curious to talk to
Mr. Townsend about that you can get around that each and every
time standard is that if a veteran then needs supervision with
those activities of daily living, they can be--those ADLs can
be considered under supervision, protection, and instruction.
In the beginning, a lot of VA staffers were not trained to look
at it that way under this new regulation.
I would be curious to know if that--if he ever appealed and
had it looked at through the lens of supervision protection----
Senator Cassidy. Okay. I am going to make that a question
for the record, just because I want to ask Ms. Beck something.
Ms. Sawyer. Yes. Absolutely.
Senator Cassidy. Ms. Beck, I had coffee with a woman who is
now my age, 66, but I remember when she was 17, and so, and a
lot happens in the interim, and one of the things that hasps
happened is that she has a son who has been mentally ill, and
he is now 40--diagnosed when he was 27. It was--and she said at
some points she just felt like giving up. Just like, I can't do
it.
We can feel that, right. You mentioned here the issue of
support for the supporter. If you had to put your finger on the
critical gaps in mental health services for the caregivers,
where would your finger land?
Ms. Beck. Sir, thank you for that question. Yes, it is a
significant problem that we have seen quite a bit of at the
Elizabeth Dole Foundation. I think that one of the major things
we recommend in our testimony just to start to impact that
problem is that, you know, it has been great. The PCAFC was
able to now offer mental health services for those who are
eligible for that program, but that is a small minority of the
population.
In our testimony, we recommended that it be expanded to
those in the general program as well to at least, again, you
know, take a larger bite at the apple of addressing that. I do
think also that, you know, we haven't--we can also try to
remove some of the burden that is felt by those caregivers by
addressing some of the care coordination issues that are
rampant, speaking of things that are rampant, within the VA.
In almost every case that I have run into in years of doing
this and those with the foundation, lack of care coordination
has been at the root of the problem for both the veteran and
the caregiver.
The amount of time that the caregiver has to spend in
navigating those services, and the frustration and the anger of
consistently having to repeat and prove your issues, and the
needs is weighing very heavily on both caregivers and veterans
themselves.
Senator Cassidy. My friend, she said, every year I have to
go and reestablish that it is true that my son has been
disabled for mental illness for 20 years. It is like, why? Now,
I get you recover from some things, but there is some things
you do not recover from. It does seem like we could make some
distinctions of that in our law. I got to apologize to Warnock.
I went over longer than did he. Thank you all very much.
Ms. Beck. Thank you.
The Chairman. Senator Cassidy, thank you for your
questions. I will just have one question before we wrap up, and
I really appreciate the testimony of all of our witnesses. I
wanted to go back to you, Mr. Townsend. You are a retired
physician assistant and someone who is deeply engaged with
other veterans in your community through the Paralyzed Veterans
of America and volunteering at the local VA medical center at
Wilkes-Barre.
Even with your extensive knowledge of the health care
system and your veteran connections, you had to "self-educate"
on the VA benefits that were available to you. Multiple
veterans organizations have said they received no direct
outreach from the VA about the caregiver support program.
Often, veterans seem to have heard of the program from a
veterans service organization or from a fellow veteran, not
from the VA. I am concerned that this haphazard approach--and
that might be an understatement.
This haphazard hazard approach to outreach will leave too
many families that are eligible in the dark about the Caregiver
Support Program. Veterans and their caregivers deserve to know
when there is a program that can provide them with the support.
I would ask you, how did you find out about the caregiver
support program? That is number one, and number two is, how do
you think veterans who are not health care experts are
connected to other veterans as you are, can find out about
these programs and how to navigate them.
Mr. Townsend. The haphazard approach that you described,
Senator Casey, certainly has been my personal experience. Most
of what I learned through--it was through a process of self-
education, by talking to fellow veterans, by working with
veteran service organizations like PBA, by looking at online
resources.
Some of those are online resources, in fact, are produced
by the VA. It is interesting that one of the things that seemed
commonsense to me, because I agree with you, that the VA
medical system can be intimidating, even for somebody with
health care experience.
One of the first things I thought of, that would occur,
would be that when you--particularly when you are new in the
system, that you would have an opportunity to sit down with
maybe a social worker at the VA and they would explain to you
the benefits that you are eligible for, but that certainly was
not my experience.
If I could make one recommendation, it would simply be to--
for the VA to better educate the beneficiaries of their care,
of all the services that are currently available to them,
because that communication of information I think often doesn't
occur, at least not in the way that it should.
The Chairman. Well, that is a reasonable proposal. We need
a few of those around here. I wanted to close with a statement,
and we will wrap up, and all of you have been very patient with
your time and your experience and your expertise, and we
appreciate you being here with us.
As we heard today from our witnesses, the VA's Caregiver
Support Program is a vital and life changing benefit for so
many families, but too many veterans are not able to get the
benefits that they have earned, and that they and their
families deserve. Our service members, and veterans put their
lives on the line every day to ensure that America remains the
land of the free. We rely on their commitment.
When they are wounded or when they are injured or ill, they
need our support, and they need our commitment. With 5.5
million military caregivers in the United States, it is
imperative we do everything we can to support the critical
workers providing family and other paid caregiving.
As one family in Pittston, Pennsylvania, right near my
hometown of Scranton, shared in a statement. For the record,
for today's hearing, "if our son T.J., who lost his eyes and
one third of his brain in service to our country, if he is
disqualified, then we are left wondering who truly qualifies
for these services."
We must do more to provide support to veterans and
caregivers so that they can do their work and are supported
fully in the process. We need to provide easier and clearer
access to information about the caregiving and long-term care,
services and support that the VA offers, as well as easier
navigation and support in the application process.
As we heard from Mr. Townsend, veterans shouldn't have to
rely upon the word--upon word of mouth to find out about these
life changing benefits. We also need to make sure that the VA
has the resources that it needs, including a strong, stable
workforce to provide veterans with the best and most efficient
care, including caregiver support services.
I look forward to working with my colleagues to address the
needs of our millions of veterans and their family members who
are in need of long-term care. I know we will have a number of
statements for the record for this hearing--I should say
closing statements for the record for the hearing, and we will
enter those into the record at the appropriate time.
I want to once again thank all of our witnesses for
contributing their time and their expertise today. I will be
entering, and I am just holding up a folder with--containing
five written statements for the record.
These are from Pennsylvania veterans who receive long-term
care services and support from the VA, or who are enrolled in
the Family Caregiver--Family Caregiving Program.
The Chairman. Last, if any Senators have additional
questions for the record for witnesses, or statements to be
added to the record, the hearing record will be kept open for
seven days until next Wednesday, June the 12th. Thank you all
for participating today, and this concludes our hearing.
[Whereupon, at 12:06 p.m., the hearing was adjourned.]
=======================================================================
APPENDIX
=======================================================================
Opening Statements
=======================================================================
OPENING STATEMENT OF SENATOR MIKE BRAUN, RANKING MEMBER, SPECIAL
COMMITTEE ON AGING
American veterans represent the absolute best our country
has to offer, and they deserve the absolute best when they
return home.
Of our country's 16.5 million veterans, nearly half are 65
years or older and 3.2 million have a disability rating over
30%. Given these dynamics, it is essential that we improve how
we are caring for our aging and disabled veterans.
Historically, state veterans homes were the only option for
aging and disabled veterans in need of skilled nursing care.
Now, we have built a robust infrastructure of 165
facilities across all 50 states by working in partnership with
states. However, increasingly both older and younger veterans
want to remain in their homes while receiving care, often from
their families.
When younger post-9/11 veterans returned home wounded but
not fully in need of traditional institutional care, Congress
had to reevaluate its care options. Congress established the VA
Caregiver Support Programs (CSPs) to better meet the emerging
needs of this new era of veterans. These programs provide
family caregivers with a menu of services from education to
respite care.
Since 2011, the VA CSPs have helped relieve stress for tens
of thousands of wounded veterans and their caregivers. In 2020,
the Biden Administration published a rule that tightened
eligibility requirements for the Program of Comprehensive
Assistance for Family Caregivers. This resulted in many
participants being kicked off the program and no longer
receiving critical caregiver support.
I joined Senator Tester in introducing the CARE Act
(S.1792), which pushes back on VA while improving operation and
oversight of the Caregivers Program. I was pleased to see that
our bill was included in the bipartisan Veteran's package
currently making its way through the House. This isn't the only
improvement Congress can make to the VA Caregiver Support
Programs.
As we are facing critical shortages in the caregiving
workforce, Congress and the VA must ensure veterans have access
to consistent and reliable respite options. One way we can do
this is by leveraging the existing resource available in our
State Veterans Homes. Veterans should be able to use their
respite hours to access services including in-home paid
caregivers and State Veterans Homes Adult Day Health Centers.
These health centers provide more robust services for veterans
than traditional independent adult day cares and State Veterans
Homes are well-positioned to scale them quickly if given the
flexibility to do so.
By reinstating the State Veterans Homes construction
flexibilities and allowing them to open satellite locations at
existing medical and long-term care facilities, Congress can
swiftly and efficiently address the respite needs of veterans
and their caregivers.
I am committed to working with the Senate Committee on
Veterans Affairs to reinstate those flexibilities and ensure
all veterans have access to high-quality respite care.
I look forward to the discussion and insights our panelists
bring today.
=======================================================================
Prepared Witness Statements
=======================================================================
U.S. Senate Special Committee on Aging
"Heroes at Home: Improving Services for Veterans and Their Caregivers""
June 5, 2024
Prepared Witness Statement
Peter Townsend
Chairman Casey, Chairman Tester, Ranking Member Braun,
Ranking Member Moran, and distinguished members of the
Committees. Thank you for the opportunity to speak with you
today regarding my experiences with the caregiver support
services available through the VA and its Caregiver Support
Programs.
My name is Peter Townsend. I'm currently 60 years old and
live in Auburn Township, Susquehanna County in northeastern
Pennsylvania with my wife Lisa, who is also my caregiver.
I served in the United States Army on active duty from 1982
to 1986. After completing infantry and airborne training, I was
assigned to units in Ft. Lewis, Washington, Camp Kitty Hawk in
the Republic of Korea and Ft. Bragg, North Carolina.
Following my discharge from active duty in 1986, I used the
educational benefits I earned through the Veterans Educational
Assistance Program to pursue an education in healthcare and
earned degrees in nursing and as a Physician Assistant. I went
on to work for over two decades as a Physician Assistant,
mostly in primary care, before retiring prematurely in 2014 due
to complications of Primary Progressive Multiple Sclerosis.
When I was initially diagnosed with Multiple Sclerosis (MS)
around 2007, my symptoms were mild and progressed slowly.
Unfortunately, as the disease progressed, I began to experience
significant difficulty with mobility, as well as difficulties
with fatigue, cognition and bowel and bladder dysfunction,
among others. Today, I rely upon a power wheelchair when out in
the community and a walker to ambulate short distances in the
home.
Through casual conversations with fellow veterans, I
learned that MS was a medical condition that the VA recognized
as a presumptive, service-connected disease.\1\ At the urging
of my veteran friends, I filed a claim with the VA for
disability in 2019. With the assistance of Paralyzed Veterans
of America, of which I am a member, I was successful with my
claim and am now rated 100 percent service-disabled due to MS.
After receiving my determination, I enrolled for the first time
in VA healthcare.
---------------------------------------------------------------------------
\1\ VA Benefits and Services for Veterans with Multiple Sclerosis -
Multiple Sclerosis Centers of Excellence
---------------------------------------------------------------------------
As my symptoms progressed, I began to rely more and more on
the assistance of my wife, Lisa. My experience with MS has been
that of unpredictability with a wide variation in symptom
severity. Most days are "good days" where I am able to function
fairly independently. However, when confronted by a flair or
"pseudo exacerbation," often as the result of a febrile illness
or other acute condition, I can become temporarily
incapacitated. During these times, I rely very heavily on Lisa
for assistance with a variety of activities of daily living to
include intermittent catheterization, transfers, toileting,
personal hygiene, dressing and meal preparation. Fortunately,
these episodes are infrequent and short-lived, lasting from
several days to a week or two. Even though infrequent, I have
had no less than three of these episodes already this year.
Prior to leaving the workforce, Lisa had been working as a
Case Manager for Keystone Community Resources in Montrose,
Pennsylvania, a company that provides services to adults in the
community with intellectual and developmental disabilities.
Eventually, as my condition deteriorated, we decided that Lisa
would retire early from her position in June of 2022 at age 61,
in order to be my full-time caregiver.
Once again, primarily through a process of self-education
and online resources, we learned of the VA's Program of
Comprehensive Assistance for Family Caregivers (PCAFC). So,
when the VA opened eligibility for the program to veterans of
all service eras in October 2022, we applied. Unfortunately, we
were informed the following month that our application had been
denied. As I understand it, we were denied entry into the
program due to the VA's determination that I did not require
assistance with the performance of certain "activities of daily
living" each time that activity was performed, or that the
level of assistance did not "rise to the level required to
participate in the PCAFC".
This strict interpretation of the eligibility criteria by
the VA is of particular concern to veterans like myself with
medical conditions like MS whose symptoms are highly variable
and unpredictable. My concern is that because of this current
interpretation by the VA of the eligibility criterion for the
Program of Comprehensive Assistance, many other veterans like
me and their caregivers are being denied access to this
extremely valuable program. I'm confident that I am not the
only one!
After our application for the comprehensive program was
denied, Lisa was eventually enrolled into the Program of
General Caregiver Support Services (PGCSS). However, this
transition to the PGCSS was not automatic and we went for some
time thinking that we were enrolled in the general program,
although we were not.
One of the most valuable benefits of the Program of
Comprehensive Assistance, is the availability of medical
insurance coverage for caregivers through the Civilian Health
and Medical Program of the Department of Veterans Affairs
(CHAMPVA). The availability of CHAMPVA was the only way we
could afford for Lisa to retire early and fortunately for us,
she qualified for coverage under the program due to my
permanent and total disability rating. This option, however, is
not available to those veterans denied Access to the PCAFC,
whose disability rating is less than 100 percent, permanent and
total.
Although the Program of General Caregiver Support Services
offers fewer benefits than the PCAFC, one significant benefit
it does offer is respite care. We were able to utilize this
benefit earlier this year when Lisa underwent total knee
replacement surgery in January. The Spinal Cord Injury and
Disorder (SCI/D) Clinic Coordinator was able to arrange for me
to be admitted to the Community Living Center at the Wilkes-
Barre VA for three weeks while Lisa recovered from her surgery.
Lisa knew that regardless of what was happening with my health,
I was being cared for so that she could focus on her recovery.
I can't emphasize enough how valuable the respite care benefit
was to our family at that time, and it's comforting to know
that it will be there if we need it in the future.
Throughout this journey, our goal has been, and will
continue to be, to create an environment that allows me to live
in our home as long as possible and to avoid the need for long-
term care. Participation in the VA Caregiver Program helps us
to achieve that goal. The reality is that my current level of
disability is such that I am no longer able to live
independently and would require placement in an assisted-living
facility were it not for Lisa's efforts.
I would like to make it clear that Lisa and I remain very
grateful for all the benefits that we have received and
continue to receive! These include, but are not limited to, the
Home Improvements and Structural Alterations (HISA) grant that
we used last year to partially fund the complete remodel of our
master bathroom to make it fully wheelchair accessible, as well
as other grants and services that I am eligible for but have
yet to utilize. We thank the Veterans Administration for the
services that they have already provided and the excellent care
that I continue to receive.
One of the ways that I am able to show my gratitude is by
volunteering at the Wilkes-Barre VA Medical Center. For over
two years I have served as a Red Coat Ambassador, once a week,
as a way of serving my fellow veterans and by giving back to
the organization that has done so much for me.
The system is not perfect, however, and there will always
be room for improvement. I encourage the Committees to work
with the VA to ensure a more seamless transition to the PGCSS
following denial of the PCAFC. Also, there needs to be better
communication to veterans of the resources and benefits
available through the VA, particularly those newly enrolled in
VA healthcare. Lastly, taking care of a loved particularly
those newly enrolled in VA healthcare. Lastly, taking care of a
loved Finally, as a member of PVA, I would be remiss if I did
not mention the need for Congress to pass the Elizabeth Dole
Home Care Act (H.R. 522/S. 141) which will further improve upon
the resources and services available to veterans like myself
and their caregivers. This legislation addresses some of the
most urgent needs of veterans and the people who care for them,
and they should not have to wait any longer. I urge you to pass
this bill as quickly as possible.
I thank you for this opportunity to share our experiences
and look forward to answering any questions that you may have.
U.S. Senate Special Committee on Aging
"Heroes at Home: Improving Services for Veterans and Their Caregivers""
June 5, 2024
Prepared Witness Statement
Hannah Nieskens
Chairmen Casey and Tester, Ranking Members Braun and Moran,
and Members of the Senate Special Committee on Aging and Senate
Veteran Affairs Committee, I am honored to testify today. My
name is Hannah Nieskens, and I have been married to my husband,
Kelly, for twenty years. I have been his caregiver for eighteen
and a half of those years.
In 2005, Kelly was a 23-year-old Army infantryman deployed
to Forward Operating Base McHenry in Hawijah, Iraq. Hawijah,
located in the Sunni Triangle, was a hotspot for insurgency
activity during the Iraq War. On May 4, 2005, during a routine
patrol, Kelly's Humvee was struck by a large IED. This was the
fifth time a roadside bomb had hit his vehicle since his
arrival in November, but this time the damage was catastrophic.
The explosion left the Humvee disabled in an 11-foot-wide
crater, and the squad members, including Kelly, were knocked
unconscious.
Upon regaining consciousness and exiting the vehicle, they
came under sniper fire. Kelly was struck by a large-caliber
rifle round that traveled through his ribs, hit his armored
plates, and ricocheted multiple times through his torso before
lodging near his spine. He survived thanks to the extraordinary
efforts of medics, doctors, and the evacuation team.
Kelly was honorably discharged and did not receive medical
retirement or Servicemembers' Group Life Insurance Traumatic
Injury Protection (TSGLI). I believe this was partly because he
was under a stop-loss order when he was wounded, as his formal
separation date had already passed, and partly because he was a
National Guardsman activated to active duty Army service and
was unaware of these benefits.
Upon reintegration into civilian life, Kelly's physical
limitations were evident: mobility issues, painful scars, nerve
damage, neurogenic bowels, migraines, seizures, and hearing
loss. However, his cognitive impairments presented the greatest
challenges, including executive functioning issues, memory
deficits, mood dysregulation, impaired judgment, impulse
control problems, chronic sleep deficit, anxiety, difficulty
establishing and maintaining relationships, and inability to
concentrate. In 2011, after being referred by Kelly's VA
psychiatrist, I was accepted into the VA's Program of
Comprehensive Assistance for Family Caregivers (PCAFC), which
has been a lifeline for us. The support and assistance from the
PCAFC staff have been invaluable in managing Kelly's care and
providing support and educational opportunities for me; I have
nothing but good things to say about the VA Montana PCAFC
staff.
However, I did have concerns about Kelly's healthcare. The
Veterans Health Administration (VHA) doctors had prescribed
numerous medications to manage his symptoms with limited
success. In 2016, I shared my concerns with another caregiver I
had met through the PCAFC, suspecting that many of Kelly's
symptoms were due to TBI rather than PTSD. PTSD typically
improves with treatment, but TBI symptoms often worsen over
time as the brain ages. Kelly's symptoms had steadily worsened.
My friend recommended UCLA's Operation Mend program, which
provides comprehensive assessments for veterans. Kelly was
accepted to the UCLA program, and in June 2016, we traveled to
Los Angeles for an 8-day evaluation. Despite the neurologist's
initial expectations that a brain MRI was unlikely to show
anything of significance 11 years after the injury, an MRI
revealed twelve lesions on Kelly's brain, some as large as a
dime, confirming a significant TBI from the blast. I recall the
doctor asking Kelly if he remembered any symptoms from 2005. He
said he remembered having tremendous headaches for 3-4 months
and that his helmet would not fit on his head for a few weeks.
However, at the time, the care for his gunshot wounds took
priority.
The discovery of brain lesions, the results of UCLA
clinical neuropsych testing, and a UCLA spine evaluation
enabled us to reopen Kelly's Veterans Benefits Administration
(VBA) benefits claim to address missing and low disability
ratings. Kelly's (VBA) initial TBI disability rating had been
10%. I attribute this low rating to the lack of a comprehensive
neurological exam and the absence of a brain MRI. After a
thorough review of 29 sets of medical records spanning 2004-
2016, Kelly received additional benefits backdated to December
2016. These included a 100% permanent and total rating, a 70%
TBI rating, aid and attendance benefits, a 50% rating for
migraines, and service connection for neurogenic bowels. I was
also appointed his VA fiduciary due to the cognitive deficits
of TBI, including impaired judgment and memory, which rendered
him incompetent by VA definition.
In 2021, ten years after entering the VA's Program of
Comprehensive Assistance for Family Caregivers, we were
notified that Kelly needed a reassessment for our eligibility
for the PCAFC program. Honestly, given the magnitude of Kelly's
needs and the fact we had long been established with the
program, I trusted that this process would only reaffirm what
was already known. How wrong I was. The reassessment process
was grueling and heartbreaking. During a nearly two-hour
virtual appointment with a contracted occupational therapist,
Kelly and I had to painfully recount every limitation he faces.
When Kelly became emotional while discussing toileting needs
due to neurogenic bowel, the examiner was unable to see his
tears, and she pressed on.
I also had to try and quantify everything I do as a
caregiver. This is difficult when you have spent nearly two
decades as a caregiver because all of the support I provide is
so integrated into our daily lives. I did my best to recount my
caregiving tasks, including personal care assistance with
activities of daily living (ADLs), medication management, meal
preparation, transportation, behavioral and emotional support,
mobility assistance, financial management, home adaptation, and
advocacy and support with healthcare providers.
The resulting report was incomplete and inaccurate. Perhaps
the most egregious error was a statement that read in part, "He
has had a gunshot to the head." The report also missed critical
diagnoses and VBA disability ratings. For example, Kelly's VBA
rated disability of status post through and through gunshot
wound injury, coded with VBA diagnostic code 5320 for muscle
injuries due to wounds caused by gunshots or other missiles,
was recorded in his VHA records as superficial scars and back
muscle impairment, as there was no equivalent diagnostic code
in the VHA medical record system. His VBA rating for neurogenic
bowel was recorded in the VHA system as irritable colon.
Perhaps most importantly, his TBI disability, including the
rating of 70%, was completely missing in the VHA record as a
rated service-connected disability.
I did my best to advocate to get these disability codes
fixed before submission of the reassessment document for the
Centralized Eligibility and Appeals Team (CEAT) review. Despite
the best efforts of the VA staff, the incorrect diagnoses could
not be corrected due to inequivalent diagnostic codes between
the VBA and VHA systems.
The reassessment outcome was stunning. Ironically, on March
23, 2022, the very day of the Senate Veteran's Affairs
Committee hearing entitled "Honoring Our Commitment: Improving
VA's Program of Comprehensive Assistance for Family
Caregivers," a nurse at the Centralized Eligibility and Appeals
Team (CEAT) reviewed Kelly's and my case and determined that
"the Veteran and caregiver do not meet eligibility criteria."
We were issued a letter dismissing me from the program.
I have wondered, due to the timing, if this person actually
did a thorough review of the reassessment report or if, on the
morning of March 23, the CEAT staff hastily ejected a number of
program participants, anticipating that the Senate hearing may
result in a halt to all impending evaluations.
Regardless, this decision highlighted several issues:
1. Data Discrepancies: VBA and VHA records are stored in
separate databases, leading to incomplete or incorrect ratings
and disability information in the VHA record.
2. Process Discrepancies: A thorough VBA assessment,
considering extensive evidence from multiple medical sources
over a decade, contrasted sharply with a superficial VHA
evaluation based on a one-time exam with an examiner unfamiliar
with Kelly's needs and limited records review spanning six
months.
3. Outcome Discrepancies: The VBA examination process
identified a need for aid and attendance "to protect the
Veteran from the hazards or dangers incident to the Veteran's
daily environment." The VBA also determined a rating of
incompetency due to "cognitive deficit as of TBI." The VHA
reassessment determined that a "daily need for supervision,
protection, or instruction for a minimum of six continuous
months" did not exist.
4. Penalizing Stable Needs: Veterans with stable needs or
those receiving private care are disadvantaged in reassessments
due to fewer medical records. The lack of frequent doctor
visits should not be interpreted as an insignificant need.
Veterans with stable needs are less likely to doctor frequently
and, therefore, do not have an extensive health record.
5. Penalizing Access Issues: VA Montana Healthcare
strives to provide service to veterans but faces chronic
understaffing and a lack of specialty care providers. Kelly has
not seen a VA clinical psychologist, so there are no notes in
the VHA system from such a specialist about his cognitive
impairments for supervision, protection, and instruction (SPI).
Similarly, he has not been seen by a VA occupational therapist
to document his physical assistance needs. The neurologist who
recommended aid and attendance for Kelly retired this year,
transferring his care to the only other VA neurologist in the
state, located over 200 miles away. Kelly used to receive care
from a VA psychiatrist via telehealth, but she also retired,
and his medication management was transferred to a pharmacist
via telehealth. Through community care, Kelly receives regular
spinal injections from an orthopedic surgeon for mobility and
visits a community care chiropractor for pain and mobility
needs. Due to VA staffing challenges and shortages, veterans
may not develop comprehensive VA medical records with internal
notes regarding ADA or SPI needs. In our case, I believe the
lack of a detailed VA medical record in the six months
preceding the evaluation worked against us.
6. VBA Ratings Do Contribute to Program Access: The only
positive outcome from the PCAFC reassessment was that adding
Kelly's 70% TBI VBA rating to the VHA data system made him
eligible for additional support. In September 2022, a VA
Polytrauma/TBI program caseworker contacted us regarding his
TBI and offered additional services for which he was eligible.
When I explained that his TBI had occurred in 2005, the
caseworker was initially surprised that he was only now being
identified for needed care. "Better late than never," she said.
Considerations and Recommendations:
1. Presumptive Need: By its very nature, aid and
attendance and serving as a fiduciary are forms of supervision,
protection, and instruction. I believe certain VBA ratings
should, by their nature, be presumptive of caregiving needs,
such as incompetency, aid and attendance, or housebound status.
I believe it would save the VHA a whole lot of time, energy,
and expense if it utilized the VBA records as part of its
assessment process to eliminate reassessments for veterans with
presumptive ratings and conditions.
2. Threshold of Need: Define in law that ADL assistance
does not need to be "each and every time," as currently stated
in the regulation and upheld by a court as an allowable
interpretation. The current definition is exceptionally
problematic for certain conditions. For example, a diagnosis of
neurogenic bowel and treatment for encopresis with constipation
and overflow incontinence requires substantial and timely
hygiene assistance. However, by their nature, these conditions
are episodic and irregular. Similarly, the threshold for
supervision, protection, and instruction assistance should be
"regular," not "continuous daily care." Requiring "regular"
assistance with certain SPI needs to maintain personal safety
can also be episodic. For example, acting as a fiduciary
involves continuous, regular responsibilities, but not
necessarily daily tasks. Likewise, providing care during a
seizure episode or dissociative fugue state is continuous but
not daily, yet these situations demonstrate a "regular" need
for safety and protection assistance.
3. Costlier or Unavailable Alternatives: Removing
caregivers from PCAFC could lead them to seek more expensive
care options for their veterans, including home health aides
through Medicare or the VA programs. Utilizing home health
aides instead of caregivers exacerbates the significant
nationwide shortage of home health aides. In addition, the
availability of home health care aides, especially in rural
areas, like our town in Montana, which has a population of 68,
is none to few.
4. Reassessment Volume: Approximately 16,000 people need
a new PCAFC reassessment before September 2025. I fear another
rushed process will be neither comprehensive nor valid, placing
undue emotional strain and stress on veterans and caregivers. I
believe reassessments for PCAFC should not be annual. Instead,
reassessments could occur when a veteran's needs change
significantly, as determined by a doctor or the PCAFC team.
5. Comprehensive Evaluations: Specialists should be
involved in reassessments. Medical records from providers
outside the VA, whether through community care or private care,
should be obtained and considered. Given the high staff
turnover within the VA, records may need to be reviewed for a
period longer than six months to find the most accurate
information.
This May marked 19 years since Kelly's injury. Over these
years, I have learned that aging significantly amplifies the
challenges faced by people with disabilities. As the brain
ages, it naturally undergoes changes that can affect cognitive
function, memory, and overall neurological health. In
individuals with a traumatic brain injury (TBI), these aging
processes can be accelerated, leading to a more rapid decline
in cognitive abilities and exacerbating existing neurological
issues. Similarly, the body's physical aging process impacts
mobility and other bodily functions. Muscles weaken, joints
become stiffer, and the risk of developing chronic conditions
grows. These increasing needs make daily activities for people
with disabilities more challenging and require continuous,
specialized care.
Withdrawing support for disabled veterans with high needs
and their caregivers is incomprehensible. As the brain and body
age, the need for consistent and comprehensive care for our
veterans only intensifies. Removing the critical support
systems provided by programs like PCAFC not only jeopardizes
the health and well-being of veterans but also places an undue
burden on caregivers, making it increasingly difficult to
manage these complex and evolving needs.
Thank you for allowing me to share my story. I am happy to
answer any questions you may have.
U.S. Senate Special Committee on Aging
"Heroes at Home: Improving Services for Veterans and Their Caregivers""
June 5, 2024
Prepared Witness Statement
Andrea Sawyer
Chairmen Casey and Tester, Ranking Members Braun and Moran,
and Committee Members, my name is Andrea Sawyer, and I am the
Advocacy Director for the Quality of Life Foundation (QoLF), a
national non-profit organization founded in 2008 to address the
unmet needs of caregivers, children, and family members of
wounded, ill, or injured veterans.
As you know, over the years, legislation, and policy with
respect to caregivers has fortunately evolved. Congress passed
the VA MISSION Act of 2018 which made substantial changes to
the original Program of Comprehensive Assistance for Family
Caregivers (PCAFC). The changes include: (1) expanding PCAFC
eligibility to caregivers of Pre-9/11 veterans and (2)
expanding eligible care conditions to include illness and
noncombat-related injuries.
Initially, the MISSION Act legislation was greeted with
great fanfare. New generations of veterans and caregivers would
now be eligible, and those who were ill or otherwise injured
would have the option of having a loving family member care for
them. By broadening eligibility, Congress acknowledged the
argument caregivers had been making for years--by being present
at the veteran's side, caregivers are able to facilitate
growth, maintain progress that was made in therapies, and offer
a more complete medical picture to the specialists who were not
able to be with the veteran all the time. This led to improved
outcomes for many warriors and cost- savings for the
government.
Congressional Intent vs. Implementation
Congress clearly expressed its intent that seriously
injured veterans were to be served by the PCAFC program in the
MISSION Act legislation. As it had done with the original
legislation creating the program, Congress again made sure to
leave no doubt that injuries other than physical injuries were
to be considered, emphasizing on multiple occasions that,
"serious injury (including traumatic brain injury,
psychological trauma, or other mental disorder,)" be
considered. It is important to note that Congress had the
opportunity to change the eligibility requirement from
seriously injured to the stricter "severely" injured, a term
that was clearly in the lexicon at the time of the passage of
the legislation. However, Congress chose to stay with the more
inclusive "seriously injured."
As a result of this new legislation, the Department of
Veterans Affairs drafted new implementing regulations,
including revising the criteria for admission and developing
new application, assessment/evaluation, and approval/denial
processes. As a result, and due to the complexity of the new
evaluation and appeals processes, QoLF refocused its efforts
and created educational resources for those applying for the
program and assisted in the preparation of clinical appeals for
those who have been denied. Through our work, our staff has
developed a unique understanding of the operational and policy
questions and challenges surrounding the roll-out and
implementation of the post-MISSION Act PCAFC program. However,
let me be clear QoLF is NOT offering any clinical judgement, we
are simply assisting the caregiver and veteran to identify
factual errors and omissions in the record, gather documents
supporting their case, and articulate their arguments in clear,
concise language.
As we assisted in the drafting of these clinical appeals,
we found that although the new legislation broadened the
program, the VA's implementing regulations and guidance have
vastly narrowed the number of individuals who would qualify for
PCAFC services, including the stipend. In many cases, it seemed
the VA had exchanged a program intended for seriously injured
to one only for those who were severely injured. BOTH
categories of veterans often require a caregiver to achieve
their maximum level of functionality and highest quality of
life.
In March 2022, QoLF testified before the Senate Veterans
Affairs Committee (SVAC) about the problems we found with the
regulation and implementation of changes the VA made after the
MISSION Act passage. At that time, VA had just paused the
discharges of Legacy participants since their re-evaluations
had just begun under the post-MISSION Act evaluations. While it
was anticipated there would be some discharges among Legacy
participants, far more were discharged than expected through
the assessment process. Additionally, many older veterans from
the first MISSION Act cohort, with needs anecdotally expected
to qualify for the program, were not qualifying.
Where We Were:
At the time of March 2022 SVAC hearing, QoLF listed a
multitude of issues with the assessment and evaluation process,
some created from legislation, some from regulation, some from
the assessment language, and some from the implementation
process. The highlights of those stated issues were:
1. Language in the regulation requiring assistance "each
and every time" an Activity of Daily Living (ADL) was
completed;
2. Language in the regulation requiring "continuous daily
care" for supervision, protection, and instruction;
3. Language of serious injury v. catastrophically
injured;
4. Language surrounding the "ability to self-sustain in
the community" with respect to tier determination;
5. The length of time of the history of the veteran's
condition being evaluated in the record (past twelve months);
6. Gathering of the outside records and specialists'
input; and
7. Lack of evidence provided by the CEAT (Clinical
Eligibility Assessment Team) decision to understand the
discharge or level decision rendered.
Additionally, two court decisions, the Beaudette and the
Veteran-Warriors decisions, created new issues surrounding
PCAFC. The decisions meant the Caregiver Support Program (CSP)
had to develop and implement plans to resolve existing issues
within PCAFC, some of which QoLF had mentioned in our March
2022 SVAC testimony.
In the months after the March 2022 SVAC hearing on VA's
PCAFC, VA Central Office (VACO) CSP leadership wisely engaged
with Veteran Service Organizations (VSOs), CSP staff, and
caregivers across the country to learn about challenges,
identify additional issues, and discuss ideas for resolution.
As a result of those engagements, VACO CSP has resolved some of
the original issues, identified potential regulation changes,
and developed and implemented staff trainings for a program
that had not existed previously within VACO CSP, and, in some
areas, VHA. While we do not always agree, QoLF wants to commend
Dr. Colleen Richardson and her staff for their willingness to
engage in these very complex issues and seek appropriate policy
solutions.
Unfortunately, in the late fall of 2022, VA Office of
General Counsel ceased to allow the VACO CSP team led by Dr.
Richardson to interact with and continue the active listening
sessions with VSOs on policy and implementation language
surrounding the remaking of the regulation for the VA CSP,
including the PCAFC. Since that time, the entire Veteran
Caregiver Community, as well as the VSO Community, has awaited
the new pending regulation for the VA CSP, hoping that the
problems we testified to in the past, and will testify to
today, will be addressed in that new regulation.
On May 13, 2024, QoLF and Military Officers Association of
America (MOAA) held a Caregiver and Veteran Experience: A
Community's Response to the Pending VA Caregiver Support
Program Regulations 2024 Roundtable. At that time, we hosted
legislative representatives from many prominent VSOs, several
Congressional staffers, including SVAC staffers from both
sides, and caregivers, researchers, and governmental
representatives. The purpose of the roundtable was to identify
problems with the post-MISSION Act regulation and propose
actionable solutions to improve VA PCAFC. Some of those
solutions are incorporated our testimony today.
Where We Are:
While much work has been done, much still remains to make
this an effective and fair program for veterans and caregivers.
Below, please see a summary of remaining issues:
1. "Each and Every Time":The legality of 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 the program has been reviewed. The Sheets
decision ruled that this strict interpretation of assistance
with ADL's under VA's regulation was allowed under the
legislation creating the PCAFC. However, VACO 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, impeding progress in rehabilitation and potentially
causing harm. Changing the ADL language to "regular assistance"
would align the language with the frequency of assistance under
other VA programs, as well as allow veterans to function at
their highest potential when able to without fear of losing
their caregiver. Changing this language will require a
regulation change.
QoLF feels a change to "regular assistance with an ADL"
will resolve the issue. HOWEVER, to prevent any backsliding we
would prefer this language be legislated as otherwise the
regulation can be re-interpreted as was done in 2015, 2017, and
2020, necessitating constant pauses.
2. "Continuous Daily Care":The requirement that a
caregiver must assist a veteran with supervision, protection,
and instruction (SPI) continuously throughout the day excluded
some conditions for which the legislation had been expanded.
For example, under the original regulation for the MISSION Act,
a veteran with Alzheimer's who only sundowned would not be
eligible for the program because the veteran would not always
need "continuous daily care." While the veteran would have
needed daily care, the veteran was independent during some
daytime hours, and therefore care was not continuous. The
Sheets decision actually rectified this issue by stating that
the "continuous daily care" standard under the MISSION Act
regulation was stricter than the PCAFC legislation allowed. As
a result, the regulation reverted back to the definition found
in the legislation which was "regular or extensive
instruction."
The guidance for VA CSP SPI was rewritten, nationwide staff
was retrained, and QoLF has seen a significant improvement in
qualifying under this requirement.
3. "Seriously vs. Catastrophically Injured":Both the
Omnibus Act of 2010 and the MISSION Act used the term
"seriously injured." At the time of the original legislation
the term "Seriously Injured" existed in the DOD lexicon as a
person who would need at least six months to recover from
injury and would not return to a state of fitness for duty.
Because of the number of joint commissions that existed at the
time, media interest, and public scrutiny that lexicon was
understood at the time. By 2018, the passage of the MISSION
Act, withdrawal from Iraq, and downsizing of the force in
Afghanistan lowered the number of recently injured veterans and
attention to this population waned, allowing the term and its
definition to fall out of the common lexicon surrounding the
legislation. Transition of staff in Congress and in the VA also
created a vacuum of knowledge around this term.
The term "catastrophically injured" was created by the VA
in 1996 with the expansion of VA priority groups and the
realization that there were veterans who needed primary care
from VA, but whose severely disabling injuries/conditions were
NOT service-connected. For example, a veteran who became a
quadriplegic from a car accident AFTER his service, would
qualify under the designation of "catastrophically injured" so
as to be eligible for VA healthcare even though his severely
disabling injury was not a service-connected injury.
Additionally, catastrophically injured" focuses more on
injuries impacting the performance of ADL's and less on a need
for conditions that require SPI, although PCAFC allows for
qualification due to a severe need for SPI.
DOD used "catastrophically disabled" as a term to discuss
an injury category that was unlikely to ever be able to return
to fitness to duty after injury, allowing for a service
member's consideration for medical retirement during their
recovery process, but there was no adoption of DOD's term
"catastrophically disabled" in the original or MISSION Act
legislation surrounding PCAFC. Thus, VA never adopted the DOD's
definition of "catastrophically disabled" and instead used
their own previously existing definition.
Somehow, in the discussion of the PCAFC program through the
years since the MISSION Act, the understanding of these terms
has been confused by some organizations, veterans, and staff
leading to a misinterpretation of the intent of the program.
"Catastrophically injured" does NOT describe the injury
severity for PCAFC services in either the law or the VA
regulation. It was an "insurance" term created by VA to
designate a priority care and payment group for VA outpatient
healthcare services.
QoLF believes the issue surrounding the definition of VA's
term "catastrophically disabled" has brought to light why VA
did not use its own definition of "catastrophically disabled".
However, since the catastrophically disabled, as designated by
the VA, need high levels of assistance with ADL's and/or SPI
functioning, Congress could expand the eligibility to
"seriously injured and those designated as qualifying for VHA
services under VHA's definition of catastrophically disabled."
This would allow veterans who were severely disabled after
service, in non-service connected accidents or by non-service
connected illnesses, to be able to reap the benefits of VHA's
PCAFC.
4. "Unable to self-sustain in the community":For purposes
of determining the tier level of the veteran, the Caregiver
Eligibility Team (CEAT) has to answer the question, "Is the
veteran UNABLE to self-sustain in the community?" Due to the
confusing wording of the question, QoLF identified that this
was keeping many significantly injured veterans (quadriplegics,
triple amputees, and veterans missing parts of their brains)
from being placed in the highest tier for their caregiver
stipends. These denials were not because these veterans did not
qualify for that level of caregiving; it was because CEAT staff
often read the question backwards. QoLF addressed this issue in
our March 2022 SVAC testimony and addressed it with CSP
leadership afterward. VACO CSP set up a Quality Management (QM)
review team who did a random sampling of cases for the "unable
to self-sustain in the community" question. Upon that first
review, and with multiple errors documented, the field staff
was retrained. Once the retrained field staff had time to make
more decisions, another review was conducted. Despite many
retrainings and examples being added to the form where the
answer has to be given on this question, there still seem to be
many errors regarding the interpretation of that specific
question. This is not a legislative issue, it is a regulatory
issue.
QoLF believes that the VA regulation and assessments should
reframe the question to: Is the veteran able to function in the
community without a caregiver?
5. Review of past twelve months of records' review:In
our March 2022 SVAC testimony, we addressed that a review of
twelve months' worth of records may not accurately capture the
veteran's needs, especially during and immediately after the
COVID restrictions often kept patients from being seen in
clinic. Additionally, if veterans and their practitioners have
long-standing relationships, doctors may not take the time to
restate a veteran's needs in every record. Conversely, due to
the high turnover of VA physicians, a veteran and his primary
care physician may have only met together once before an
evaluation for PCAFC was completed by the physician.
Most VA physicians and practitioners do not have sufficient
time with patients during a visit to make required
documentation (screenings, etc.). Due to their limited time,
and these requirements, many practitioners simply copy and
paste many of the same notes visit to visit so that they can
pay attention to the patient. Thus, notes may not capture the
complete condition of the veteran due to the large amount of
information that must be collected in the very short amount of
time that the VA allots physicians to meet with patients. ADL
needs are neither required nor routinely documented during a
visit with a primary care doctor, nor are the needs of
supervision, protection, and instruction.
This issue is NOT resolved, but this issue involves much
more than the CSP. It is dependent upon the amount of general
information that physicians are required to collect, the short
period of time that VA physicians have to talk with their
patients and record notes in the record (in some clinics this
is 20 minutes-10 mins with the patient, 10 minutes for
documentation), the shortage and turnover of physicians, and
COVID which limited in person interaction between the veteran,
caregiver, and physician. Recall that many VA clinics refused
to allow caregivers in with veterans during COVID so physicians
may or may not have known if a caregiver was even involved. We
will further address this issue in our recommendations at the
end of our testimony.
6. "Gathering of outside records and
specialists'input":While the PCAFC assessment asks if the
veteran sees outside physicians, and the assessment notes the
answer, there is difficulty in getting the veteran's outside
records into the VA PCAFC process. Two reasons account for the
difficulty: VHA's understanding of their "duty to assist" and
each facility's policy for how records are placed in the system
at each VA. Caregiver Support Program (CSP) leadership has done
a significant amount of training with the CSP staff on
assisting Veterans and caregivers with gathering outside
records and giving the records time to arrive at the VA, while
also keeping an eye on the timeline for the PCAFC assessment
process. This "duty to assist" in the process is a new process
within VHA CSP. While this principle should have been
understood because it exists within veterans Benefits
Administration (VBA), it was not at many Veterans Health
Administration facilities, so "duty to assist" was formalized
by training. QoLF believes the training in "duty to assist" in
gathering outside records for local CSP staffs will help to
resolve this issue, but the language could be legislated to
insure that VHA honors its "duty to assist" veterans, as VBA is
already required to do.
The second issue with a veteran's outside records is the
placement of the records in a veteran's medical records. This
is true for services provided through Community Care or through
other insurance, TRICARE, or MEDICARE. The records must be
received and uploaded into the VA medical records system in
order to be considered as part of the PCAFC application.
However, EACH veterans Affairs Medical Center (VAMC)
Information Technology (IT) Office determines who has the
ability to upload these records-leading to variations in
procedures and the time needed to complete the process. Some
facilities allow the CSP office to directly upload the records
into the system, while others require the Primary Care Manager
(PCM) to first go through the records to determine what needs
to be scanned in and then send it to VA Records at the facility
for scanning. Other facilities require that outside records be
taken directly to a VA Records office. Further, none of these
circumstances allow the veteran or caregiver to see the Records
office. Further, none of these circumstances allow the veteran
or caregiver to see the Records office. Further, none of these
circumstances allow the veteran or caregiver to see the Records
office. Further, none of these circumstances allow the veteran
or caregiver to see the
QoLF believes that VA CSP and VA IT need to coordinate and
create a directive standardizing this process to minimize the
variations in outcome and promote the timely inclusion of
outside medical records in the decision making process. This is
outside the sole scope of VACO CSP. Some medical records and
community care records coordination and standardization
improvements are listed in H.R. 8371, the Senator Elizabeth
Dole 21st Century Veterans Healthcare and Benefits Improvement
Act.
Additionally, a veteran's specialists such as mental health
practitioners, neurologists, neuropsychologists, and
orthopedists, do not routinely have the ability to directly
offer their opinions on the functional capacity of a veteran
during the PCAFC process. Only PCMs are consulted. As with the
Primary Care concerns mentioned above, specialists have little
time to document a veteran's needs. As such, much information
about very specific treatment or assistance needs may not be
found in the record. PCMs are asked to answer questions about
treatment plans and institutionalization, but we know that they
rarely answer these questions in the CSP-PCM PCAFC
Collaboration document. The PCMs do not have time to review all
specialists' treatment plans and, therefore, may answer in a
way that disagrees with a specialist who treats a specific,
debilitating condition. Local CSP staff normally answer the
document assigned to the PCM's.
QoLF has recommendations for this issue later in our
testimony.
7. Lack of evidence provided by CEAT for admission/
discharge:VHA has conducted clinical appeals for many years for
various programs and services. As a clinical support program,
VHA rules apply to CSP. Previously, VHA required very little
documentation as to why a specific treatment or program was
approved or denied and this model continued with PCAFC. Thus,
PCAFC decision-makers at the VAMC, Veterans Integrated Service
Network (VISN), and CEAT levels did not have to do more than
post the answers to the eligibility questions and whether or
not they admitted or discharged the veteran. The VHA Clinical
Appeals Directive 1041 governing appeals within the program did
not require that the CEAT provide what evidence was considered
or how the CEAT came to their decision with the specificity
that is required in VBA decisions. The CEAT was also not
required to share what information was lacking for admission,
discharge, or to achieve a higher level of care.
Under the Beaudette decision, VHA was forced to change this
process with the notification of each level of VHA decision-
making and VHA clinical appeals for the PCAFC. The courts also
granted a right to appeal this decision to the Board of
Veterans Appeals.
This was a LARGE ask of the PCAFC program as it was
different than any other VHA program and these processes did
not exist previously within VHA. Since the Beaudette decision,
the PCAFC program had to create a more robust VHA clinical
appeals process, get feedback on that process from VSOs and
other stakeholder groups, and get training on the existing
eight-point letters used by VBA. PCAFC then had to develop a
model, have it approved by Office of General Counsel, develop
the IT template, develop training on how to implement and
complete the letter, field test it, adjust it, and then train
and implement this enterprise wide at each VISN.
PCAFC/VACO CSP have implemented a form that replicates all
of the information in a VBA eight-point letter documenting the
CEAT decision-making process. That form is required to be
uploaded to the veteran's medical record so that it is visible
within the record. Those forms are operational, and QoLF has
seen them in the record. These forms provide the needed
information to assure Veterans, caregivers, providers, and VSOs
that the decision-making process is impartial and to clarify
what evidence was considered during the decision process. If
important evidence was viewed but not considered, or if
information was missing, Veterans and caregivers now know
exactly what needs to be considered or included for any of the
three types of VHA clinical appeals that are now offered.
QoLF believes development of a CEAT decision-making form
and eight-point letter has solved the issue of being able to
determine how a decision was made by CEAT, what information was
considered, and if that decision complied with PCAFC
guidelines.
Where we need to be:
While many PCAFC issues existing prior to the March 2022
SVAC hearing have been resolved or are in the process of
resolution, some issues still remain, and, with closer
scrutiny, new issues have emerged. These issues include:
1. Lack of Congressional intent behind the expansion of
PCAFC to older generations;
2. PCAFC participant re-employment and retirement needs;
3. Aging caregivers and Caregiver-GEC interaction or non-
interaction;
4. The recommendation by some to move the program to the
VBA;
5. Interaction of IT policy and CSP at local facilities
regarding outside medical records' entry; and
6. PCM and Specialty Care Provider input in the
assessment and evaluation process.
As these issues have arisen, the issues have been discussed
with the VACO CSP and during the VA CSP Summits with VSOs and
stakeholders. The issues will require further efforts to
resolve, either within VACO CSP/PCAFC or through regulation or
legislation.
Lack of Understanding of Congressional Intent Regarding
Expansion of PCAFC:While QoLF agrees that every seriously
injured, service-connected veteran should be eligible to apply
for a caregiver, QoLF does recognize that the PCAFC was
originally created to recognize young, working-aged caregivers
leaving the workplace and not earning a wage or having the
benefit of health insurance. In expanding this program to
earlier generations, Congress did not clearly change this
intention.
While the program was never created to be a dollar-for-
dollar replacement for wages a caregiver had earned or could
earn in the workplace, it was considered a recognition of the
caregiver being unable to work due to the needs of the veteran.
With the expansion of PCAFC, older Veterans with service-
connected ratings who had non-service connected serious
conditions creating a need for assistance, were rightfully
included in the program, and in all fairness, this was a
necessity as proving whether or not a WWII veteran's dementia
or diminishing ability to complete ADL's was related to a
seventy year old injury would be virtually impossible and not
the type of clinical decision VHA makes. However, if the
caregiver was older, retired, and Medicare eligible, then the
original intent of PCAFC did not apply. If the MISSION Act
changed the intent of the program to compensate a caregiver for
a service that would otherwise be provided by the VA, then the
intent is changed, but there is no clear record of this change
of intent for expansion. This means that the VA has had to
guess at the intention of the MISSION Act expansion, making it
difficult to figure out how to merge an existing program
intended for a younger generation with generations of older
Veterans for whom the original intent does not apply.
Additionally, older cohorts of Veterans may have older
caregivers. The expansion without an official change of
understood intent creates the dilemma of whether or not the
caregiver is able to care for the veteran to the extent that is
necessary to safely keep the veteran at home. If a veteran is
deemed eligible and in need of a caregiver, the proposed
caregiver may be trying to do the job of caregiver, but PCAFC
may find that for the best health outcomes, the assistance the
veteran needs should be completed by someone other than the
person who is now filling that role. Then the question is: Who
fills that role?
QoLF believes Congress needs to define the intent of the
expansion of PCAFC to clarify that the mission of the program
is to "recognize the sacrifice of caregivers for providing
services that would otherwise be required to be provided by the
VA." Additionally, a clarification would assist in the
standardization of the program between generations and VISNs
across the country.
Retirement needs of PCAFC Caregivers:When Congress created
PCAFC, as discussed the intent was to serve a younger veteran
population, the vast majority of caregivers were spouses or
siblings of young Veterans or middle-aged parents of young,
injured Veterans. Many of those caregivers, referred to as
Legacy caregivers, had short work histories due to their age at
the time of becoming caregivers. Their injured veteran also had
little time in the work world.
While PCAFC was never meant to be a dollar-for-dollar
replacement for wages lost, designating the stipend as unearned
income has created a growing concern as these caregivers age
and have no way to contribute to either Social Security or a
retirement fund. Some caregivers will exit PCAFC when their
Veterans pass away, years before they are eligible to draw from
retirement plans, but they will have expired employment
certifications or will need to prove their worth in a new
workplace after having been out of their professional fields
while they were caregiving. In addition, due to the nature of
the veteran injuries, these survivors will not receive any
significant life insurance making the survivor financial
outlook bleak.
Department of Defense programs exist for military spouses
as they move duty station to duty station so that they can re-
certify their employment certificates or receive new training.
The Department of Labor has a model for returnship programs for
older workers who return to the workplace after an absence. VA
should develop models to help caregivers return to the
workplace and save for retirement so that caregivers do not
pass from PCAFC into poverty with the passage of their
Veterans. Also, in light of this, employment that does not
interfere with the duties of caregiving should not be held
against a caregiver's suitability.
QoLF believes that Congress should assist caregivers to
renew their employment certifications that lapsed due to
caregiving responsibilities and to re-enter the workplace
through returnship programs. Congress should study creating a
mechanism for which PCAFC caregivers earning the stipend would
be allowed to contribute to retirement accounts to secure their
financial futures into retirement as is outlined in S. 3885 the
Veteran Caregiver Re-education, Re-employment, and Retirement
Act of 2024.
Aging caregivers and PCAFC-GEC interaction:When PCAFC finds
a veteran in need of assistance, but the caregiver is not able
to safely provide the care the veteran needs, an alternate
caregiver needs to be found. In addition, some Veterans have
such significant needs that they need a combination of support
services to stay safely in their homes. Sometimes, another
family member is available, but Geriatrics and Extended Care
(GEC) programs through the VA, including Homemaker/Home Health
Aide (HHA) and Veteran Directed Care (VDC), are also an option
to fill those caregiving needs. However, a number of problems
exist with the assumption that other GEC programs will
automatically replace a caregiver:
1. Until recently, PCAFC did not track referrals to GEC
from PCAFC, allowing for loss of PCAFC to create a vacuum in
the assistance for the veteran because GEC did not initiate an
evaluation of the veteran for services.
QoLF does believe PCAFC has implemented a request that a
veteran and caregiver will be connected to GEC for evaluation
for GEC programs in the absence of a qualifying caregiver, but
QoLF remains concerned that the GEC programs may not be able to
fill the need in a timely manner. This is addressed in H.R.
8371, the Senator Elizabeth Dole 21st Century Veterans
Healthcare and Benefits Improvement Act.
2. There is a GEC case mix tool that determines the
number of hours that a veteran may receive care from both GEC
and CSP programs. While GEC leadership says that the hours that
are recommended for levels of care are suggested numbers of
hours, many VA facilities and local GEC programs take these
hours as hard limits. As a result, caregivers who live in the
home and provide care 24 hours a day, seven days a week, are
replaced by VA GEC programs that offer hard limits of either
32, or with an exception 56, hours a week. Please understand,
that means a caregiver is still doing 112 hours of caregiving
each week as those Veterans with the most significant needs
often require care at night as well. VA has simply taken away
the stipend and provided some help, if GEC providers are
available.
QoLF believes the case mix tool needs to be reviewed to
acknowledge that some Veterans require more care than is
currently allotted. The program and the GEC case mix tool need
to be flexible to accommodate the varying care needs of
Veterans and not be hard limits. QoLF believes Congress needs
to further examine the interaction of GEC programs and
services. This is addressed in H.R. 8371, the Senator Elizabeth
Dole 21st Century Veterans Healthcare and Benefits Improvement
Act.
3. GEC providers are unavailable. In many areas, agencies
and providers who are contracted to provide care through HHA
and Respite programs are unable to find workers to fill the
required number of hours on the contract. Many times this is
due to low compensation rates offered by the VA, and while the
VA does have mechanisms to increase compensation to meet the
market demand, it is extremely underutilized. In addition, due
in part to low wages, providers often do not show up at their
assigned time, and there is no way for caregivers and Veterans
to directly report this information to the VA. They can report
it to the contracted agency, but the agency may or may not find
a replacement aide, once again leaving caregivers and Veterans
without help. In a few cases of older caregivers, we do know
that some used their PCAFC stipends to pay for private
providers. When their PCAFC stipends were taken away, they
could no longer private pay for aides and VA programs were
unable to find agencies to fulfill contracts for HHAs and
Respite, creating greater health issues for caregivers and
Veterans. In one of our recent cases, a caregiver was
discharged from the program, specifically so she could be given
more HHA hours. Of the 32 hours she was granted for HHA care
through an agency, fewer than half of them were being filled by
the agency due to staffing shortages. She was having to call
EMS repeatedly to help her get the veteran up to bathe and
change him, which is what the HHA contracted care was supposed
to help her do.
QoLF recommends that a mechanism be created for local VAMCs
to be trained in how to raise reimbursement rates quickly when
rates drop below competitive area rates for Home Health
workers. In addition, the VA needs to better track when
providers are not showing up for shifts and develop options to
address this problem to potentially include paying family
caregivers who are providing care for a veteran when a
contracted agent is supposed to be doing so. VA should also not
be able to discharge a veteran or caregiver from PCAFC, except
in cases of fraud or abuse, without GEC care being in place if
the reason for dismissal is that the caregiver is deemed unable
to fulfill the assistance needs of the veteran. This is
addressed in H.R. 8371, the Senator Elizabeth Dole 21st Century
Veterans Healthcare and Benefits Improvement Act.
4. The Veteran Directed Care Program (VDC) is an
invaluable tool within the VA that allows Veterans to create
flexible budgets to provide for their own clinical support
needs, including caregiving. While we have understood that some
have suggested that the VDC program replace CSP, QoLF does not
agree. Currently, many VAMC's do not offer VDC, and even those
that do often do not have a dedicated staff member to
administer the program. In addition, Medical Center Directors
are hesitant to implement the program because they are paid by
reimbursement and the VAMC must provide the funding up front.
Furthermore, the problems with finding providers for VDC are
often the same as HHA and Respite. Lastly, while sometimes
preferred, VDC places a significant paperwork and accounting
burden on the veteran or family member which can be especially
difficult for older Veterans and caregivers. In some cases, due
to the case mix matrix mentioned above, that family member now
performing these administrative duties may be a former
caregiver who is no longer allowed to participate in the
caregiver program, but still has to provide all the caregiving
services except for the limited hours that are now provided by
a VDC caregiver.
QoLF believes that the VDC program can be a good option for
some caregivers, but the CSP program provides a much more
comprehensive host of services and is administratively less
burdensome to the caregiver.
The recommendation to move PCAFC eligibility from VHA to
VBA:Some have recommended that VBA has a better evaluation
process to decide if Veterans qualify for programs based on
disabilities than VHA. While QoLF acknowledges that VBA does
make eligibility decisions for benefits, PCAFC is a clinical
support program as defined by statute, an area in which VBA has
no experience. The purposes are different and not comparable,
and VBA has no viable way to determine eligibility for a
clinical program. If PCAFC eligibility were shifted to VBA, why
wouldn't the eligibility for Homemaker/Home Health Aide,
Veteran Directed Care, or Home-Based Primary Care (HBPC), all
clinical support programs, be made through VBA?
Additionally, some have argued that veteran service
officers did not have access to PCAFC records. To resolve this,
VSO's simply needed to ask Veterans and caregivers to provide a
copy of the veteran's medical records. All of the PCAFC
documentation was in the medical record, and VHA has now
created an online portal where VSOs have access to view
documentation for VHA Supplemental Claims and VHA Higher-Level
Reviews. The Board of Veterans Appeals works in concert with
PCAFC to obtain all documentation related to cases submitted to
the Board. That documentation is and always has been available
to the VSOs.
QoLF feels this issue has been resolved by the developments
in PCAFC after the Beaudette decision implementation. However,
QoLF believes that the VA should explore the opportunity to
establish a "pathway to advocacy" through VHA where
organizations, traditional VSOs and other nonprofit
organizations, can be trained on the services and programs
available to Veterans through VHA, be given points of contact
for those program to connect Veterans, and create a release of
information that is recognized throughout the VA so qualified
organizations can advocate on a veteran's behalf. "Pathway to
Advocacy" is included in H.R. 8371, the Senator Elizabeth Dole
21st Century Veterans Healthcare and Benefits Improvement Act.
Interaction between PCAFC and IT:As discussed earlier, QoLF
believes VACO CSP and VA IT/ VA Medical Records need to create
a unified policy for how a veteran's outside provider records
(whether CCN or private pay) are uploaded to the VHA medical
record and PCAFC application to be viewed. This important issue
should not be left to a facility by facility decision.
PCM and specialists' input in the assessment and evaluation
process:Because VA PCMs and specialty care providers have
little time to document needs for assistance in the medical
records leaving an absence in the record of documentation of
the veteran's need(s) for assistance, a uniform way to document
these needs becomes necessary. While we understand that
clinicians may not want to weigh in directly through a
questionnaire in the assessment process, it is important that
these practitioners are able to document the needs of the
veteran in both ADLs and SPI.
QoLF would offer some suggestions to see that PCMs' and
specialty care providers' input is provided:
1) Congress should remove the language "to the maximum
extent possible" when describing the input of the physician in
the MISSION Act;
2) VA creates a form that is filled out once a year where
the PCM documents a discussion of a veteran's ADL's and makes a
decision to refer to Occupational Therapy (OT)/Physical
Medicine and Rehab for a Functional Independence Measurement
and Functional Assessment Measurement score (FIM-FAMs) or full
OT exam. Mental Health Providers and/or neurologists would be
required to complete a SLUMS (or similar mental status) score
yearly and decide if further evaluations or service referrals
were needed; and
3) VHA should develop a training for all medical
providers within VA to address why documenting current needs,
even if takes time and is repetitive, is needed for the PCAFC
evaluation, as well as other clinical support services that VHA
provides.
QoLF does not believe that there is any ill intent, simply
a lack of time, on the part of providers to document all the
needs of a veteran carefully. Requiring a veteran's medical
specialists, not just the PCM, to participate in PCAFC, is
included in H.R. 8371, the Senator Elizabeth Dole 21st Century
Veterans Healthcare and Benefits Improvement Act.
Conclusion
QoLF appreciates the opportunity to offer feedback in the
form of updates and recommendations on the state of PCAFC. We
would like to again offer praise for Dr. Richardson and her
VACO CSP team. Since Dr. Richardson's tenure in the VA CSP
began in February 2021, she was tasked with continuing to
implement a program that had a regulation, directive, and
assessment developed prior to her arrival. When confronted with
the challenges created by the processes established prior to
her arrival to the program, Dr. Richardson and her team have
acknowledged these issues and made a concerted effort to
conduct quality management reviews; to rectify what they can
within the program themselves through training and guidance to
the locals, VISNs, or national program; to engage with
stakeholders about changes that are needed and should be
proposed; and she has taken action on all feedback she has been
given. While we feel PCAFC has had many stops and starts, QoLF
feels that the Program, which has not before existed in any
medical setting in the United States, is today on a footing to
work out the final problems and be the extremely successful
program that Veterans and caregivers need it to be and the
program Congress intended it to be.
We urge the passage of H.R. 8371, the Senator Elizabeth
Dole 21st Century Veterans Healthcare and Benefits Improvement
Act to codify important changes within PCAFC to codify
important changes to PCAFC. Additionally we request the passage
of S. 3885 the Veteran Caregiver Re-education, Re-employment,
and Retirement Act of 2024 which would create pathways for
caregivers to return to employment when they are finished with
their caregiving duties and allow them to save for retirement
while they are fulfilling their caregivers duties so they do
not wind up destitute in their later years. Thank you for the
opportunity to present our testimony to you today.
U.S. Senate Special Committee on Aging
"Heroes at Home: Improving Services for Veterans and Their Caregivers""
June 5, 2024
Prepared Witness Statement
Fred Sganga
Chairmen Casey and Tester, Ranking Members Braun and Moran,
and Members of the Committees:
Thank you for inviting the National Association of State
Veterans Homes (NASVH) to testify on ways to improve and expand
support for aging Veterans and their caregivers. As you may
know, NASVH is an all-volunteer organization dedicated to
promoting and enhancing the quality of care and life for the
Veterans and families in our Homes through education,
networking, and advocacy. Today, there are 165 VA-recognized
State Veterans Homes (SVHs) across the nation operating 158
skilled nursing care programs, 47 domiciliary care programs,
and three adult day health care (ADHC) programs. All 165 SVHs
are members of NASVH, the only organization that represents
their collective interests, and our membership is expected to
continue growing with 13 new Homes expected to seek VA
recognition by the end of next year.
I am currently the Legislative Officer and a past President
of NASVH, however my full-time job is Executive Director of the
Long Island State Veterans Home at Stony Brook University, a
340-bed skilled nursing facility serving honorably discharged
Veterans and their families. I also serve as an adjunct
professor in the Graduate Healthcare Administration Programs at
Stony Brook University and Hofstra University, where I lecture
on the topics of healthcare leadership and long-term care
management.
Background of the State Veterans Home System
Messers Chairmen, the State Veterans Homes program is a
partnership between the federal government and State
governments that dates back to the post-Civil War period. To
help cover the cost of care for Veterans who choose to reside
in SVHs, VA provides per diem payments at different rates for
skilled nursing care, domiciliary care, and ADHC. VA also
provides State Home Construction Grants to cover up to 65
percent of the cost to build, renovate, and repair SVHs, with
States required to provide at least 35 percent in matching
funds.
Today, there are over 30,000 authorized State Home beds
providing a mix of skilled nursing and domiciliary care. SVHs
provide approximately half of all federally-supported
institutional long-term care for our nation's Veterans
according to VA's most recent budget submission. However, State
Veterans Homes will consume less than 20% of VA's total FY 2024
obligations for Veterans' long-term nursing home care.
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According to VA, the institutional per diem for SVH skilled
nursing care is approximately $262; by comparison, the rate for
private sector community nursing homes is about 60% higher
($424), while the rate for VA's Community Living Centers (CLCs)
is about 750% higher ($1,971). Although there are important
differences among these programs that account for some of the
cost differences, it's clear that the SVH partnership provides
tremendous value for VA by leveraging matching State funding
for the benefit of the we serve.
[GRAPHIC NOT AVAILABLE IN TIFF FORMAT]
Oversight of State Homes
VA certifies and closely monitors the care and treatment of
in SVHs, which includes a comprehensive recognition survey
before any new Home can be certified to receive federal
financial support, and an annual inspection surveys to assure
resident safety, high-quality clinical care, and sound
financial operations. SVHs must meet extensive VA regulations
covering more than 200 clinical standards, in addition to
dozens of fire and life safety standards.
About 75 percent of State Homes are also certified to
receive Medicare support for their residents and must undergo
annual inspections by the Centers for Medicare and Medicaid
Services (CMS) to assure safety and quality care. In addition,
State Homes usually function within or are overseen by a
state's department or division of' affairs, public health, or
other accountable agency, and typically operate under the
governance and oversight of a board of trustees, a board of
visitors, or other similar accountable public body.
Aging Need a Full Spectrum of long-term Care Options
Today, there are an estimated 8.3 million living aged 65 or
older, approximately 4.9 million who are 75 or older, and 1.3
million who are 85 or older. VA data shows that SVHs care for a
significantly older veteran population than either VA CLCs or
community (contracted) nursing homes. State Homes also provide
more long-stay care and more end-of-life care, as would be
expected for their older veteran population. In total, the
average daily census (ADC) for all VA-supported nursing home,
both long and short stay, is only about 32,000; which is less
than one-half of 1% of the approximately 8.3 million living 65
or older, and just over 2% of those 85 plus; and these
percentages are projected by VA to drop in future years.
Over the past decade, VA has been placing greater focus and
resources on home- and community-based services (HCBS) and
NASVH strongly supports expanding these services to provide
aging a full spectrum of long-term care options. However, the
amount of nursing home care offered by VA today is woefully
inadequate compared to the overall number of eligible. Although
the need for nursing home care may diminish as the veteran
population declines in future years, it will never go away:
there will always be significant numbers of who lack adequate
family support to allow them to age at home. There are also
many of who will be able to utilize HCBS to remain in their
homes for as long as possible but will eventually reach an age
and stage where traditional nursing home care is necessary. For
these reasons, Congress and VA must continue to make smart
investments to sustain and expand traditional bed-based care.
VA should expand home- and community-based care, but it should
be an addition to, not a subtraction from facility-based care.
NASVH and our member State Veterans Homes will continue to
seek new and innovative ways of delivering long-term services
to aging and ill Veterans, including through a range of
graduated care options for Veterans who need support to age in
place. SVHs understand aging Veterans' needs and have expertise
in connecting them with their VA benefits and services. With
our clinical knowledge and extensive infrastructure, State
Veterans Homes could serve as hubs in communities across the
country, particularly in rural areas, to offer aging Veterans a
full spectrum of long-term support services, including home-
based care.
Opportunities to Expand SVH Adult Day Health Care Programs
In addition to skilled nursing and domiciliary care
programs, SVHs are authorized to offer Adult Day Health Care
(ADHC), which is a non-institutional alternative to a skilled
nursing facility for aging Veterans who have sufficient family
support to remain in their own homes, but who need or will
benefit from a day program that promotes wellness, health
maintenance, and socialization. ADHC can help to maximize the
participant's independence and enhance their quality of life,
as well as provide much-needed respite for family caregivers.
Medical Supervision Model ADHC provides a higher-level of
care, including comprehensive medical, nursing, and personal
care services combined with social activities for physically or
cognitively impaired adults. This program is staffed by teams
of multi-disciplinary healthcare professionals who evaluate
each participant and customize an individualized plan of care
specific to their health and social needs. There are currently
only three State Veterans Homes operating ADHC programs - New
York, Minnesota, and Hawaii - although several other states are
working on plans that could lead to additional programs in the
future.
At the Long Island State Veteran Home, we have a 40 slot
Medical Model ADHC program, with about 75 Veterans currently
enrolled. We operate a six day-a-week program, Monday through
Saturday, for six hours each day, from 9:00 AM to 3:00 PM. We
also provide door-through-door transportation that is fully
wheelchair accessible, with ambulettes picking up the Veterans
and returning them home at the end of the day. We provide these
Veterans with the full array of clinical services offered at
our skilled nursing facility, while allowing them to live in
their own home. Those services include physical, occupational,
and speech therapies; clinical nutritional counseling, along
with three meals (includes dinner to go); recreational
activities provided by a Certified Therapeutic Recreation
Specialist (CTRS); along with personal care, including bathing,
grooming, and hair care. Our ADHC program helps to improve the
quality of life and maintain the independence of the veteran.
We also help stabilize chronic medical conditions, reduce
emergency room visits and potential hospitalizations, delay or
prevent nursing home placement, and provide significant respite
support for caregivers. In fact, we can save a caregiver
multiple trips it would take to provide all the services we are
able to provide in one day.
ADHC programs can be a critical lifeline for both Veterans
and their caregivers, as shown in the story of one of our
residents, West Point graduate and Army Colonel Mike Grabel.
After a heavily decorated 27 year military career, that
included three tours in Iraq and Afghanistan, Mike had a
stroke. For the next two years, he required hospital care and
faced the knowledge that he would need significant physical
therapy and extensive support for the rest of his life. His
wife Jeannine was with him every step of the way during his
recovery. Due to the level of support Mike required, and the
need for Jeannine to return to work, they had to consider
whether the best option was placement in a skilled nursing
facility. Fortunately, we were able to offer Mike the option of
enrolling in our Adult Day Health Care program. Today, Mike
receives the care and support he requires six days a week,
including door-through-door transportation, nutritious meals,
and comprehensive medical and personal care services. Jeannine
was able to return to work as a school nurse, secure in the
knowledge that her loved one is in good hands.
To increase Veterans' access to SVH ADHC programs, NASVH
offers two recommendations. First, VA and Congress should
modify and/or clarify current regulations so that the State
Veterans Home Construction Grant program can be used to
construct, modify, or expand SVH facilities to operate new or
expand existing ADHC programs. VA's current interpretation of
federal regulations does not allow a SVH to apply for a
construction grant in order to begin a new ADHC program; it may
only seek a grant to expand or replace a facility being used
currently for ADHC. Although dozens of states have expressed
interest and taken steps towards offering adult day health care
services, the single greatest barrier to entry is the
construction of new or modification of existing space to
properly operate an ADHC program. We call on Congress to work
with VA to make this commonsense adjustment to encourage
expansion of SVH ADHC programs.
Second, VA should authorize and take actions to encourage
SVHs to establish satellite ADHC programs outside their
facilities and campuses in more conveniently located areas
where there are high concentrations of Veterans who could use
these services. The Long Island State Veteran Home's ADHC
program can only serve Veterans in Suffolk County because of
the distance they would have to travel. However, we have been
working for several years to open a satellite ADHC program in
Nassau County, which would open up this life-changing service
as an option to thousands of additional Veterans and family
caregivers.
Additional Home-Based Care Services in State Veterans Homes
In addition to expanding ADHC programs, NASVH also
recommends that Congress and VA explore other ways for SVHs to
develop new home-based programs, including ones similar to VA's
Home Based Primary Care, Homemaker Home Health Aide Care,
Respite Care, Palliative Care and Skilled Home Health Care. For
example, during the COVID pandemic, I was forced to temporarily
shut down our ADHC program under State orders intended to
protect Veterans. However, I was able to pivot to an innovative
program that supported the Veterans enrolled in our ADHC
program by providing meals, PPE, telehealth, and home care
visits. VA was able to support this temporary program using
emergency powers granted to the Secretary during the pandemic.
Given the flexibility and financial benefits to VA from
partnering with State Veterans Homes, there are myriad
possibilities for better addressing the changing demographics,
needs and preferences of Veterans today and in the future. Many
State Veterans Homes already offer a number of medical and
therapeutic services that could be provided on an outpatient
basis for Veterans participating in home-based programs.
With our expertise on the needs of aging Veterans, SVHs
could develop an array of home-based services to support
Veterans who want to age in their own homes. When they are no
longer able to remain at home, SVHs could ease their
transitions to facility-based skilled nursing care. Such an
integrated non-institutional program could begin as a pilot
program, with different states customizing it to meet local
circumstances. NASVH recommends that Congress consider
establishing pilot programs to explore new arrangements for
providing integrated home- and community-based programs through
and in partnership with State Veterans Homes, offering a full
spectrum of support from home care to skilled nursing care.
Expanding the Spectrum of Care in State Veterans Homes via
Assisted Living
State Homes currently offer two levels of residential care:
skilled nursing care for those who need significant support
completing activities of daily living (ADLs) and domiciliary
care, for those who are able to complete their ADLs, but
require shelter, food, and other basic necessities. With
millions of aging Veterans no longer able to live
independently, but whose needs fall in between these two levels
of VA-supported care, NASVH believes it is time to begin
offering assisted living programs in State Veterans Homes,
which could offer greater support than offered by domiciliary
care and would cost less than skilled nursing care.
NASVH was pleased to offer our strongest support for S.
495, the Expanding Veterans' Options for Long-Term Care Act,
legislation that would authorize VA to create a three-year
pilot program to provide assisted living care for Veterans. In
particular, we appreciated the inclusion of State Veterans
Homes. We understand that a scaled-down version of the pilot
program is part of the omnibus Senator Elizabeth Dole 21st
Century Veterans Healthcare and Benefits Improvement Act and we
hope that all Senators will support this legislation. On behalf
of our member State Homes and the Veterans we serve, I want to
thank Senators Tester and Moran for introducing this
legislation.
Continuing Challenges Facing State Veterans Homes
Messers Chairmen, State Veterans Homes are still recovering
from the severe impacts of the COVID pandemic, particularly
with regard to their financial operations, as every State Home
had to significantly increase expenditures for PPE, cleaning
and sanitizing supplies, and laundry services. Homes also had
enormous increases in personnel costs to cover wages, overtime,
hazard pay, sick leave and temporary agency staffing. In
addition, many Homes made modifications to buildings and rooms
for isolation and further enhanced sanitization measures to
include new technologies and new equipment.
During this same time, occupancy levels in most SVHs
declined because new admissions were suspended, leaving an
increasing number of beds empty. Today, SVHs still face
significant challenges in bringing their occupancy rates back
up to normal levels, primarily due to national staffing
shortages that are impacting all health care facilities. As a
result, the level of VA per diem support provided each year to
State Veterans Homes has declined significantly in recent
years, creating serious financial challenges for Homes to
remain solvent at a time when their State budgets are also in
crisis. Although VA is authorized to pay a basic per diem that
covers up to 50% of the cost of a veteran's care, the basic per
diem rate in recent years has been less than 30% of the actual
cost. NASVH is seeking new legislation that would set the basic
per diem rate permanently at 50% of the daily cost of care.
NASVH is also seeking support from Congress to fully fund
the State Home Construction Grant program. Over the past
decade, annual appropriations for this program have been
extremely volatile: typically providing funding for only a
small portion of the qualified state matching grants, with
occasional bursts of funding to catch up to the full demand.
The backlog of Priority Group one State Home Construction
Grants, which includes critical life-safety projects, continues
to rise far beyond available federal funding. When the overdue
FY 2024 Priority list is released later this year, it is
expected to show a need for at least $1.2 billion in federal
funds to match what the States have already made available.
Unfortunately, Congress appropriated just $164 million for
FY 2024, less than 15% of the amount required to fully fund the
program. For FY 2025, VA requested just $141 million, though
the House Appropriations Committee proposed slightly increasing
that funding level to $154 million in a vote last week. NASVH
is seeking support from Congress to substantially increase
funding for the State Home Construction Grant program - to at
least $600 million in FY 2025.
The funding gap is even worse than it looks due to VA's
unwillingness to provide "Build America, Buy America Act"
(BABAA) waivers for State Home Construction Grants. As you may
know BABAA - which was approved in 2022 and became effective in
2023 - requires the federal government and recipients of
federal grants to buy most materials and products from US
manufacturers. However, the law included a waiver provision for
projects that would have a very hard, if not impossible, time
complying with the new domestic content requirements due to the
unavailability U.S. made components and materials, or the
extremely high cost of U.S. made products. There is
particularly a sourcing problem for HVAC systems,
refrigeration, generators, transformers, electrical controls,
and LED lighting fixtures, that are virtually impossible to
procure from U.S. manufacturers.
A number of States that previously received conditional
grant approvals from VA prior to BABAA's effective date, and
who have already expended significant funds for planning,
design, and/or long-lead procurement, are now threatened with
the loss of federal matching funds, which will almost certainly
force them to delay or cancel these much-need construction
projects. Without this legislation and these BABAA waivers,
many States will have to cancel vital construction projects,
and as a result thousands of aging and disabled Veterans would
lose the opportunity to receive high-quality long-term care in
a State Veteran Home.
Legislation was introduced in the Senate and House ("WAIVER
Act", S. 3886 & H.R. 7514) to require that VA use its statutory
authority to provide State Veterans Homes one-time transitional
waivers from certain "Build America, Buy America Act" (BABAA)
requirements that would otherwise prevent many State Veterans
Homes from receiving VA funding for critical construction
projects. We would urge all Senators to consider supporting
this legislation.
Clinical Staffing Challenges
Messers Chairmen, the biggest challenge facing State
Veterans Homes is the shortage of clinical professionals. As
these Committees are certainly aware, there is a national
staffing crisis affecting virtually every health care system,
especially for nurses and other critical clinical positions,
and particularly in rural and remote areas. State Homes are
already challenged in hiring and retaining staff because of
workforce shortages and the significant competition from local
hospitals, higher-paying transitionary agency positions (e.g.,
traveling nurses), and other private employers. Current
staffing shortages are impacting veteran access to care since
many SVHs are turning away new admissions due to their
inability to recruit, hire, and retain sufficient staffing.
Furthermore, the recent promulgation by CMS of new minimum
staffing standards will further exacerbate our challenges. It
is estimated that nearly 94 percent of nursing homes nationwide
do not currently meet at least one or more of the three
proposed CMS requirements. Although many SVHs are already in
compliance, these new standards will increase competition for a
limited labor pool - particularly for nurses. These new
staffing minimums could result in SVHs being forced to restrict
the number of Veterans they can serve, and it is possible we
could see some SVHs close altogether, with both scenarios
leaving aging and disabled Veterans at risk.
We have been grateful for VA's Nurse Recruitment and
Retention Scholarship program which has had a positive impact
on a number of SVHs. We are asking Congress to expand that
program so that more Homes can benefit from it. At the same
time, we believe that a similar program for other critical
staffing vacancies - such as physical therapists, dieticians,
social workers, etc. - could help boost the ability of SVHs to
compete with private sector employers who are able to offer
higher salaries and benefit packages. We hope to work with
Congress to develop new and innovative programs that will help
SVHs recruit and retain sufficient staffing to allow more
Veterans to be served by our Homes.
Strengthening NASVH-VA Partnership
Finally, to maximize the effective use of State Veterans
Homes' resources and capabilities. VA must finally commit
itself to a full and meaningful partnership with States. Too
often, SVHs are an afterthought in VA's planning and budgeting
processes. This is exemplified by the continuing lack of
representation by State Veterans Homes on VA's Geriatrics and
Gerontology Advisory Committee (GGAC), despite NASVH having
nominated multiple highly-qualified State Home administrators
and leaders in recent years.
Messers Chairmen, State Veterans Homes can and must play a
greater role in meeting the needs of aging Veterans and their
caregivers in partnership with VA and other federal agencies.
NASVH looks forward to continuing to work with these Committees
and your colleagues in the Senate to ensure that Veterans have
greater access to a full spectrum of long-term care options,
whether at home or in nursing homes. That concludes my
statement, and I would be pleased to answer any questions that
you or Members of the Committees may have.
U.S. Senate Special Committee on Aging
"Heroes at Home: Improving Services for Veterans and Their Caregivers""
June 5, 2024
Prepared Witness Statement
Meredith Beck
Chairmen Casey and Tester, Ranking Members Braun and Moran,
and Members of the Committees, thank you for the opportunity to
testify today. My name is Meredith Beck, and I am the Senior
Policy Advisor for the Elizabeth Dole Foundation (EDF), a
national non-profit whose mission is to strengthen, empower,
and support America's military and veteran caregivers and their
families by raising public awareness, driving research,
championing policy, and leading collaborations that make a
significant positive impact on their lives. By working with
military and veteran caregivers every day through our numerous
programs including Hidden Heroes Communities, our Hidden
Helpers initiative for caregiver children, the Hope Fund which
provides financial relief directly for caregivers, our mental
wellness workshops, and through our network of Dole Caregiver
Fellows in every state, EDF is keenly aware of and has a unique
perspective on the challenges, issues, and remarkable strength
of the military and veteran caregiving community we are honored
to serve.
U.S. Department of Veterans Affairs Caregiver Support Program/
Program of Comprehensive Assistance for Family Caregivers
The U.S. Department of Veterans Affairs (VA) Program of
Comprehensive Assistance for Family Caregivers (PCAFC) remains
a significant concern among all generations of veteran
caregivers. We wish to strongly align ourselves with the
comments and recommendations made by our partner, the Quality
of Life Foundation (QoL), who has clearly articulated the
program's current challenges in their written testimony. EDF is
proud to sponsor the vital, specialized clinical appeals work
done by the QoL. As we await the public release of new
regulations governing PCAFC, we look forward to continuing to
work with QoL to ensure that veteran caregivers are given the
support they need and deserve.
With respect to the new PCAFC regulations, EDF notes that
the legacy cohort of eligible caregivers, those post-9/11
veteran caregivers who were admitted to the program prior to
September 30, 2020, yet again face an uncertain future. 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 eligible
post-9/11 veteran caregivers have benefitted from the monthly
stipend included in the PCAFC, the emotional toil and financial
uncertainty caused by programmatic instability in the PCAFC
have weighed heavily on caregivers and Veterans alike.
Therefore, EDF asks Congress to work with relevant veteran
service organizations to consider "grandfathering" this
population of caregivers into the PCAFC, except in cases of
fraud, waste, or abuse. This would allow the Caregiver Support
Program (CSP) to focus on its mission of supporting all
generations of caregivers rather than continuing this years-
long division within the veteran caregiving community.
As the VA works to improve support for veteran caregivers
of all generations, we would like to commend the Caregiver
Support Program for their efforts to dramatically increase the
use of 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.
Additionally, 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 in numerous RAND studies.
Therefore, we encourage Congress to 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.
Further, we were delighted to learn of the Administration's
FY2025 budget request that included an approximately 20%
increase in spending for support and services within CSP.
However, we were disappointed to learn recently that, despite
the budget request increase and expected program expansion, CSP
will not be offered a waiver like other VA programs from the
current specific purpose funding restrictions. This means that,
in most cases, CSP will not be allowed to hire the front-line
social workers, program managers, and nurses that make the
program most effective at the local level. This hiring freeze
will almost certainly have a detrimental effect on caregivers,
Veterans, and VA staff who work very hard to support those in
the program.
Elizabeth Dole Home Care Act
In addition to CSP, the VA has many programs that, when
accessed, benefit veteran caregivers both directly and
indirectly, most of which are housed under Geriatric and
Extended Care (GEC). At EDF, we see the positive things that
can happen when Veterans and caregivers are connected by
caring, passionate providers and social workers to vital
programs and services. Additional respite services, the Veteran
Directed, Home-Based Primary Care and the Homemaker Home Health
Aide are just some of the programs that support the care and
quality of life of Veterans and caregivers, especially at home
and can serve as a lifeline for Veterans and caregivers in
need.
Where available, the Veteran Directed Program, for example,
has high satisfaction rates among Veterans and caregivers
across the country. This program, a joint offering from the VA
and U.S. Department of Health and Human Services (HHS), offers
Veterans and caregivers greater choice and control over their
care and services by allowing participants to hire familiar
friends and family members to provide unskilled care,
transportation, skilled care, and other goods and services.
Veterans and caregivers can supervise their own employees and
hire additional support during the hours that are needed rather
than being subject to agency hours and restrictions. In
addition, this program has been especially helpful to those who
struggle to find 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
Executive Order from April 2023.
Unfortunately, despite being created more than sixteen
years ago and its demonstrated success, 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
technically 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% service-disabled veteran husband and 14-year
Amyotrophic lateral sclerosis (ALS) patient, Tom, who receives
care from the Durham VA Medical Center. Mary is an astute and
effective advocate for Tom. In 2019, once Mary 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. During the intervening years, she has been
told repeatedly that the program was still unavailable in
Durham, again, despite knowing another veteran was enrolled.
Finally, after significant effort on Mary's part and
intervention from EDF, the VA reversed course and Mary was told
within the last two weeks that the agency would try to enroll
Tom in the Veteran Directed Program. If enrolled, Mary will be
able to hire her own, familiar home health and respite care
support to ensure they are meeting Tom's significant needs.
This process should not and cannot be this difficult for
Veterans and caregivers. As a result of situations like Mary
and Tom's, Ranking Member Moran was joined by Chairman Tester
and others to introduce S. 141, The Elizabeth Dole Home Care
Act. In addition to mandating that every VA medical center
provide the Veteran Directed Program, the legislation takes a
holistic approach to ensuring this and other GEC programs are
offered nationwide and appropriately staffed. The bill also
attempts to ensures that caregivers have access to information
on available programs and services in a centralized digital
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% to 100% of the cost of the
closest VA Community Living Center (CLC). This would allow the
most vulnerable Veterans and caregivers the support they need
to stay in their homes, often leading to better outcomes for
veteran families, like the Gareys from Austin, TX. The removal
of the cap would help people like Dole Caregiver Fellow Lara
Garey, who is present at today's hearing, cared for her 100%
service-disabled veteran, Tom, until his death due to
complications from ALS 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, and even their son's high school graduation, which
happened in their living room so Tom could comfortably attend-
all of which he would have missed if he were in a facility two
hours away. It was Tom's greatest wish to remain at home to be
surrounded by the peace and love of his family during the
hardest of times. Tom deserved to be home with his family, and
Lara fought every day to make that possible. As you can see,
she continues to advocate on behalf of caregivers and Veterans
in similar situations.
Eventually, this legislation, which enjoys bipartisan
support in both Houses of Congress, was included in its
entirety in the recently introduced H.R. 8371, the Senator
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 includes numerous 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.
Authorizes grants to community-based organizations to
provide mental health care to caregivers.
A long-awaited pilot program to assess the effectiveness
of and satisfaction with provided assisted living services.
Mandates a "Pathway to Advocacy" requiring the Secretary
of the VA to develop a process to identify, train, and certify
outside organizations to assist Veterans and caregivers as they
navigate the resources and programs of the Veterans Health
Administration.
Enhanced burial and education benefits for survivors.
Despite strong support from the Chairman and Ranking
Members of the Senate Veterans Affairs Committee as well as the
Chairman of the House Veterans Affairs Committee, all major
veteran service organizations, and disease-related advocacy
groups, the legislation has seemingly fallen victim to the
politics of the day and been plagued by misinformation and
mischaracterization of its provisions. We urge Members of the
Senate to reach out to trusted veteran community advocacy
organizations to get factual information regarding this
legislation to ensure its swift passage, and remove Veterans,
caregivers, and survivors in need from the political fray.
Additional Issues:
In addition to issues addressed in the Senator Elizabeth
Dole 21st Century Veterans Healthcare and Benefits Improvement
Act, EDF would like to highlight other remaining challenges as
well as proposals meant to address them.
As noted above, the lack of care coordination especially
for those with the most complex needs continues to be an
ongoing challenge for Veterans and caregivers alike. We
regularly hear from caregivers who spend hours every day trying
to access the care and benefits their Veterans need, to varying
degrees of success depending on their knowledge of the
available programs and services as well as that of the VA staff
with whom they are working. Therefore, EDF supports the
following:
Passage of S. 1792, The Care Act of 2023 introduced by
Chairman Tester and Senator Braun establishing the "Pathway to
Advocacy" discussed previously. This legislation would allow
knowledgeable organizations to assist Veterans and caregivers
in the navigation of VA services as well as supplement
overwhelmed social workers.
Discussion and passage of legislation recently
introduced by Ranking Member Moran and Senator King, the
Coordinating Care for Senior Veterans and Wounded Warriors Act.
The VA is in the process of 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. Consideration of 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.
Passage of S. 622, the Helping Heroes Act, introduced by
Senators Murray and Boozman requiring a full-time Family
Support Coordinator at each VA medical Center and requiring the
VA to collect data on veteran families to better understand
their needs. In the recent past, the VA prioritized the
establishment of Family Support Resource Coordinators at each
VA medical center, but the position but the position was put on
hold as a result of a funding shortfall. These resource
coordinators would help connect families and caregivers to the
right resources both inside and outside of the VA, potentially
providing a longer-term cost savings by proactively connecting
families with needed services earlier in their journey.
The establishment of a case management and social work
lead at the VISN level who could help to coordinate training,
standardization of services, and serve as a point of contact
when challenges arise.
We support all of these initiatives intended to relieve
some of the administrative burden for both Veterans and
caregivers.
With respect to financial wellness, EDF strongly supports
two other pieces of legislation intended to alleviate the
financial strain often caused by caregiving as well as how to
adjust when the caregiving role has concluded due to
improvement, death, divorce or other causes:
S. 3702, the Credit for Caring Act, introduced by
Senators Bennett and Capito and also endorsed by our partner,
AARP, would offer a $5,000 tax credit to eligible working
family caregivers, both veteran and civilian, to offset the
over $7,200 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 the difficulty discussed above accessing the
programs and services available to them and, instead, pay out
of pocket for their needed goods and services.
S.3885, The Veteran Caregiver Reeducation, Reemployment,
and Retirement Act introduced by Ranking Member Moran and
Senator Sinema. For many PCAFC caregivers, their caregiving
role will come to an end, hopefully due to improvement in the
veteran for whom they care, but any number of reasons can be
cited for this outcome. This legislation would do many things
to alleviate that 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 would 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, EDF is familiar with a parent caregiver in Florida
whose combat-injured Marine son recently passed away. His
single mother was his caregiver for 17 years following his
severe injuries, and 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 the Committee considers S. 3885, EDF requests that the
Committee consider abolishing or greatly increasing the DIC
income limits for non-spouse caregivers enrolled in PCAFC,
allowing them to plan for retirement and leaving them far less
financially vulnerable when their caregiving role has
concluded.
Conclusion:
While caregivers and Veterans still face significant
challenges today, many can be addressed through continued
oversight and the legislative initiatives mentioned above.
Specifically, the Elizabeth Dole Home Care Act as well as the
language included in the larger legislative package would
provide, in many cases, immediate relief to those caregivers
and Veterans most in need. Therefore, the Elizabeth Dole
Foundation calls on Congress to come together, treat this vital
legislation with the respect and urgency it deserves, and pass
it without delay. Veterans and caregivers cannot wait any
longer for its life-changing, and likely life-saving
provisions.
Thank you, Mr. Chairmen, and I look forward to your
questions.
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Questions for the Record
=======================================================================
U.S. Senate Special Committee on Aging
"Heroes at Home: Improving Services for Veterans and Their Caregivers"
June 5, 2024
Questions for the Record
Peter Townsend
Ranking Member Mike Braun
Question:
In your opening statement you referenced your time staying
in a Community Living Center (CLC) for respite while your wife
was recovering from knee surgery. Why did you choose to use a
CLC instead of an in-home aide?
Response:
When I contacted my primary care provider to discuss
respite care in advance of my wife's knee replacement surgery,
inpatient respite was what was offered at that time. We did not
discuss the use of an in-home aide. After further
consideration, I do believe that inpatient respite care at the
CLC was the right choice for my situation. Although my stay at
the CLC was uneventful, the care was available to me at all
times should I need it. Had I experienced an acute exacerbation
of my symptoms during that time, scheduling an in-home aide
would have been difficult and would likely not have provided
the care and assistance that I required at the time that
assistance was needed.
Question:
How did you feel about the quality of care you received at
the CLC?
Response:
The quality of care that I received during my three weeks
of respite at the Community Living Center at the Wilkes-Barre
VA Medical Center was excellent.
Senator Kristen Gillibrand
Question:
Veterans whose health is affected by service should be
supported in their time of need. My Social Security Caregiver
Credit Act provides retirement compensation to individuals who
leave the workforce or need to reduce their work hours to care
for their loved ones. How would retirement compensation have
helped you and your wife?
Response:
My wife, Lisa, left the workforce at age 62 to become my
full-time caregiver. Her premature retirement meant that she
missed out on Social Security contributions for at least three
years, and also missed out on the opportunity to contribute to
her retirement account through her employer. Prior to her
retirement, Lisa had been employed full-time for her entire
adult life, with the exception of the year following the birth
of our son. Although we have not attempted to calculate the
financial effects of her lost contributions, I would assume
that it is significant. Recognizing that caregiving is work and
providing the appropriate retirement compensation to caregivers
who leave the workforce to care for their loved ones would be a
valuable benefit and the right thing to do! I thank you for
your question and for your commitment to this important issue.
U.S. Senate Special Committee on Aging
"Heroes at Home: Improving Services for Veterans and Their Caregivers"
June 5, 2024
Questions for the Record
Hannah Niekens
Senator Kyrsten Sinema
Question:
How do you believe the VA could better ensure it is
accounting for a patient's full medical history to prevent
those in need of community care from being at a disadvantage
when applying for the PCAFC program?
Response:
To improve the Veteran's Administration's ability to
account for a patient's full medical history, especially for
those utilizing community care or outside providers, the
following steps could be taken:
Integrated Health Information Systems: Develop and
implement a more robust and integrated health information
system that allows seamless sharing of medical records between
the VHA and community care providers. This system should be
interoperable with various electronic health record (EHR)
systems used by outside providers. The records should also be
easily accessible to VHA providers.
Integration of VBA and VHA Records: There are significant
discrepancies between Veterans Benefits Administration (VBA)
and Veterans Health Administration (VHA) records. Ensuring
these records are integrated and accessible across both systems
is crucial. This integration would help in providing a complete
medical history and prevent misunderstandings and omissions of
critical health information.
Reporting and Documentation: Establish reporting
requirements for community care providers to ensure they
consistently and comprehensively document and share medical
records with the VHA. This could include standardized forms and
protocols to ensure consistency and completeness.
Enhanced Coordination and Communication: Foster better
coordination and communication channels between the VHA and
community care providers. Joint case reviews and designated
liaisons could help ensure that the VHA receives timely and
complete medical information.
Patient Education and Empowerment: Educate Veterans about
the importance of sharing their full medical history with the
VHA. Provide them with tools and resources to track and manage
their community care medical records within existing personal
health record apps or patient portals. Additionally, provide
the opportunity to self-upload medical records from providers
who are not part of the community care network.
Data Analytics and Monitoring: Utilize data analytics to
monitor and identify gaps in community care medical records.
Implement systems that flag missing or incomplete information
based on known community care appointment authorizations and
prompt follow-up actions to ensure the patient's medical
history is fully accounted for.
Policy and Legislative Support: Advocate for policies and
legislation that support the integration of health information
systems and mandate the sharing of medical records between the
VHA and community care providers. This could also include
funding for technology upgrades and training programs.
Comprehensive Care Coordination Programs: Utilize care
coordination programs that assign care coordinators or case
managers to Veterans, especially those with complex medical
histories, to help bridge the gap between the VHA and community
care providers, ensuring all relevant medical information is
captured and communicated effectively. Examples of programs
with case management include VA Patient Aligned Care Teams
(PACTs), VA Polytrauma System of Care, Geriatrics and Extended
Care (GEC) Services, Mental Health Intensive Case Management
(MHICM), Caregiver Support Program, Military Sexual Trauma
(MST) Coordinators, Homeless Veterans Programs, VA Transition
Care Management (TCM), VA Post-Deployment Integrated Care
Initiative (PDICI).
Stable Needs: A review of medical records should include
all relevant records from any point in time where significant
need was established. Veterans who have stable needs were
disadvantaged by not having a preponderance of medical records.
U.S. Senate Special Committee on Aging
"Heroes at Home: Improving Services for Veterans and Their Caregivers"
June 5, 2024
Questions for the Record
Andrea Sawyer
Senator Kyrsten Sinema
Question:
Your testimony in a previous hearing brought to my
attention the healthcare, financial, and employment
difficulties veteran family caregivers are facing. Your
testimony, the input provided by your organization, the Quality
of Life Foundation (QoLF), and input from the Military Officers
Association of America have been critical to the formulation of
my bill, the Veteran Caregiver Re-Education, Re-employment, and
Retirement Act. One of the provisions of my bill mandates a
study of allowing caregivers to make contributions to Social
Security and other types of existing retirement accounts. What
are the QoLF's thoughts on retirement account options that
should be available to caregivers enrolled with the VA's
Program of Comprehensive Assistance for Family Caregivers
(PCAFC)?
Response:
Quality of Life Foundation has not taken a stand on the
type of retirement accounts which caregivers should be allowed
to contribute to. However, caregivers should have some form of
account created like that of Social Security or Railroad
Benefits so that there is a retirement safety net. Another
option would be to create a Thrift Savings Plan for caregivers
or to allow them to set up retirement savings. These accounts
could be taxed at the time of withdrawal like that of current
IRA's, so as not to create a taxation problem for stipend vs.
wages with the actual PCAFC stipend.
Question:
Another provision of my bill requires the VA to study the
potential challenges and opportunities of hiring additional
former PCAFC caregivers to help address staffing shortages.
What are the most significant barriers to VA employment that
QoLF has identified for PCAFC caregivers attempting to reenter
the workforce?
Response:
Caregivers moving out of full-time caregiving and back into
the workforce will have the same challenges as new parents
returning to the workforce will have. Many studies cite that
new parents have problems with child care, balancing career and
childcare demands, and continued career advancement. The same
are true for caregivers, as caregiving is essentially the same
as child-rearing in its impact on careers.
Just because a caregiver is dismissed from PCAFC does not
mean that the care recipient does not need care, just that they
need care to a lesser extent than before. Caregivers have to
find alternative care resources for their loved ones through
home health care or other alternative programs. If those care
supports fail to show or run late, then the former PCAFC
caregiver has to step into that role. This creates absenteeism
in the workplace for caregivers and can threaten long-term
employability for caregivers. Jobs should allow work-place
flexibility options so that caregivers can work from home in
order to fulfill caregiving duties simultaneously.
While many workplaces tout flexible work options,
caregivers will need workplaces to be extremely flexible.
Workplaces that expect caregivers to do nine to five jobs while
also having to ferry loved ones to doctors offices and other
appointments that are during the traditional work day, are not
caregiver friendly. Caregivers will need work places that are
focused on task achievement, not on adhering to a traditional
schedule. Caregivers have learned to achieve many goals during
caregiving, but they do their work during non-traditional
hours.
Caregivers will be left behind in career advancement as
long as they are caregiving. Because caregivers will not have
kept up with the latest advancements, missed out on continuing
education, had gaps in licensure, etc., caregivers will fall
behind in their fields. When their caregiving duties end,
caregivers will be able to make this up, but in the short term,
there will be some damage to the caregiver's career
advancement. Workplaces that are able to offer return ships
that can capitalize on the flexibility that caregivers have
mastered will be the workplaces that are able to value and
integrate caregivers successfully into their places of work.
Question:
Are there staffing gaps at the VA that former PCAFC
caregivers could be helpful in closing?
Response:
VA can integrate caregivers into a myriad of positions that
it has. Caregivers come from a variety of fields prior to
caregiving, from education, healthcare, finance, structural
engineering, etc. VA could potentially give a hiring preference
to former caregivers (many of them may already have spousal
preference for 100% p and t Veterans) to integrate them into VA
careers. VA could use unskilled caregivers as personal care
attendants or help them achieve their CNA 1 and CNA 2's to meet
staffing HHA needs for Veterans within the VA. Since VA and its
contracted agencies are facing a severe shortage of HHA
workers, it would only make sense for VA to work out a program
to help caregivers achieve CNA licensure and then hire on
former caregivers to fill the open roles that VA has in its
labor force.
Question:
In your testimony, you also highlighted the requirement
that PCAFC caregivers assist their veteran with an activity of
daily living each and every time in order to retain eligibility
for the Program, which could effectively penalize Veterans for
rehabilitating themselves to a point where they do not require
assistance every single time. Do you share the concern that
Veterans engaging in rehabilitation regimens and treatments
could lose their PCAFC eligibility?
Response:
Quality of Life Foundation has always been concerned with
the language requiring assistance "each and every time" an ADL
is performed. We have routinely pointed out the problem with
this language in our testimonies and conversations on the Hill
and with VA staff. Veterans should be encouraged to participate
in rehabilitation and treatment regimens to achieve the highest
level of independence possible without it threatening a
veteran's level of assistance. No caregiver wants to limit the
independence of their veteran through rehabilitation, but the
VA threatens a caregiver/veteran dyad's security if a veteran
shows even the slightest level of independence, even if such
independence is not sustainable.
A veteran who has lost both legs and needs prosthetics to
walk may need the assistance of a caregiver while learning to
walk again, while suffering from stump sores, and after
removing prosthetics in order to shower, toilet, or sleep. Just
because the veteran is independent on the prosthetics to walk
does not mean they may not otherwise need assistance. The
veteran's legs did not magically grow back. Penalizing a
veteran for being able to do one thing, one time without
assistance, is simply ludicrous.
The best examples of this come with Veterans with
conditions like MS that are relapsing and remitting. Veterans
can be independent, but at any point in time, their disease may
progress and they will need immediate care. Using an "each and
every time" ADL standard simply does not make sense. Caregivers
and Veterans should be encouraged to achieve long-term
rehabilitation without the constant short-term threat of having
PCAFC withdrawn until the independence achieved has proven to
be sustainable.
Question:
I understand that Veterans and their loved ones struggle at
times to secure PCAFC eligibility, so I appreciate the work
QoLF does to help them enroll with the Program. Do you work
with Veteran Service Organizations and other groups to ensure
they are equipped to advocate on behalf of caregivers and their
Veterans as they navigate the PCAFC application process and,
for those denied initially, the clinical appeals process?
Response:
Quality of Life Foundation works with many other
organizations in the veteran space to educate those
organizations on the issues facing caregivers and Veterans
throughout the PCAFC application and appeals process. We do
education sessions with multiple VSO's to teach them about how
VHA reviews the medical records to determine whether a
caregiver is needed. We discuss with them how to appeal a
caregiver determination since the appeal is a VHA appeal, which
is not the realm in which most VSO's operate. We run education
sessions on the process for many veteran supporting
organizations such as Semper Fi Fund/America's Fund Visiting
Nurses, Neuro Community Care (administrator of Wounded Warrior
Project's Independence Program) case managers, Homes For Our
Troops case managers, the Elizabeth Dole Foundation Fellows,
and other organizations that request those briefings. We do
briefings on the actual application process and separate
briefings on the types of appeals available for each decision
that is made.
Collaboratively, we also hold roundtables with MOAA for the
VSO and stakeholder community on the Caregiver and Veteran
experience. In 2023, our focus was on caregiver respite. In
2024, our first roundtable was on the state of the pending
caregiver regulation.
QoLF has created a PCAFC assessment work group of VSO
stakeholders to discuss what needs to be captured in a new
assessment for the PCAFC program to make sure that it gauges a
veteran's need for assistance and that the assessment is a
validated instrument.
What we have found is that QoLF has the expertise to be the
thought leader in the very niche space of caregiver. By staying
in our lane, we are able to support larger VSO's from having to
become masters of all, and to have them support us in our
mastery. With our granting organizations, we cross refer. When
families need PCAFC help, our grantors send the families to us,
and when Veterans needs other assistance beyond PCAFC, we refer
to our grantors for assistance.
Senator Bill Cassidy
Question:
Thank you for providing more information during our
dialogue at the recent hearing, "Heroes at Home: Improving
Services for Veterans and their Caregivers." I want to formally
recognize your efforts as the primary caregiver for your
husband after he was wounded serving our nation.
Regarding our discussion, I wanted to follow up with you on
the questions below about the Program of Comprehensive
Assistance for Family Caregivers (PCAFC):
How can we change the VA's interpretation of assistance
required for "activities of daily living" to include conditions
that involve periodic periods of higher disability hardship?
And how would "regular assistance" provide clarity for these
types of conditions - were they initially included prior to
Department of Veterans' Affairs reinterpretation?
Response:
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. This
language change also impacted those Veterans with diseases with
relapsing, remitting patterns. 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 and allowed for
relapsing, remitting conditions.
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 any day now. 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.
Question:
How can we clarify that supervision for "activities of
daily living" be included as part of the "each and every time"
standard so that we can provide needed relief to impacted
Veterans and their families through PCFAC?
Response:
When guidance was issued to the field after Veteran-
Warriors v. McDonough, the field was supposed to address
activities of daily living that did not meet the "each and
every time" standard under supervision, protection, and
instruction. Supervision, protection, and instruction, allows
CSP to look at each ADL through the lens of needing assistance
for safety while performing the ADL on a "regular" basis. SPI
on a "regular basis" for ADL's would meet the SPI standard for
qualifying for SPI. That ADL SPI falls under "Does the veteran
have the physical ability to cope or take action in a changing
environment/"; "What type of support does the veteran need to
remain safe in the home?'; "What type of support does the
veteran need to remain safe away from the home?"; "Is the
veteran able to identify his needs?"; and lastly "Is the
veteran able to arrange for his health and safety?"
Since all of necessary guidance for ADL's under SPI exists
already in field guidance, Congress could ask VA to take a
retroactive look at ADL denials and see if any denials could be
accepted under the SPI qualifications. This would impact most
denials before June 2022, but after that, corrected guidance
had been issued to and implemented in the field, in most cases.
As always, there are certain VISNs that do not comply with
field guidance, and VACO CSP has little authority to fix this.
VACO CSP has standardized authority, not centralized authority.
This means if a VISN chooses not to abide by field guidance,
there is little repercussions for the local Caregiver
Eligibility Assessment Team, and only the Veteran/Caregiver
Dyad suffer. If Congress wanted to fix this issue, Congress
could give centralized authority to the Caregiver Support
Program so that the VACO CSP staff could actually enforce the
directive they are charged with writing and implementing but
have only force of will and personality to implement under the
current standardized authority granted to CSP.
U.S. Senate Special Committee on Aging
"Heroes at Home: Improving Services for Veterans and Their Caregivers"
June 5, 2024
Questions for the Record
Fred Sganga
Ranking Member Mike Braun
Question:
In your opening statement, you mentioned that you run one
of only three Adult Day Health Care (ADHC) facilities for
Veterans. How long does a Veteran visit you during a day, and
what differentiates your ADHC from other independent adult day
programs? How do Veterans find out about this program? Who is
eligible for this service? Does VA currently contract with your
ADHC to provide respite care services for Veterans in VA's
CSPs, specifically, PCAFC and PGCSS? Do you believe your ADHC
would be able to provide this respite care?
Response:
"At this time, responses are not available for printing.
Please contact the U.S. Special Committee on Aging for further
updates and to obtain a hard copy, if available."
Question:
Indiana only has one State Veterans Home. When I met with
the Director of the Indiana Department of Veterans Affairs, he
suggested it would be more cost effective and beneficial if the
state could use existing long-term care facilities-like renting
a wing of a nursing home in Evansville or Fort Wayne-as opposed
to building an entirely new facility. However, VA doesn't
currently allow these kind of satellite operations. Did VA
previously allow satellite sites? Do you believe it would be
more fiscally responsible if State Veterans Homes had the
flexibility to utilize space in this way? During the hearing
you were questioned on the impact of the nursing home minimum
staffing rule by Senator King. Could you please expand on the
following: How does this rule impact your facilities and other
SVH directors' facilities? What are some creative staffing
alternatives that CMS could consider while ensuring quality
patient care standards are upheld?
Response:
"At this time, responses are not available for printing.
Please contact the U.S. Special Committee on Aging for further
updates and to obtain a hard copy, if available."
Senator Kirsten Gillibrand
Question:
Living at home or in the community and receiving care
during times of need is a basic right, but Veterans deal with
long waiting lists and limited options for these services. The
HCBS Access Act and HCBS Relief Act reinforces services
provided in the home and community and give our Veterans with a
disability dignified living choices. How would expanding
support for home- and community-based services complement the
current services provided by the VA?
Response:
"At this time, responses are not available for printing.
Please contact the U.S. Special Committee on Aging for further
updates and to obtain a hard copy, if available."
U.S. Senate Special Committee on Aging
"Heroes at Home: Improving Services for Veterans and Their Caregivers"
June 5, 2024
Questions for the Record
Meredith Beck
Ranking Member Mike Braun
Question:
In your testimony you mentioned Veterans simply do not know
about critical benefits like the Caregiver Support Program. I
am concerned that without sufficient outreach, education, and
support, too many Veterans will never be able to use these
services. How can the Veterans Administration make sure that
every veteran eligible for these important benefits knows about
and can use them?
Response:
"At this time, responses are not available for printing.
Please contact the U.S. Special Committee on Aging for further
updates and to obtain a hard copy, if available."
Question:
It is important for the VA to ensure that Veterans are
aware of the opportunities available to them. The VA posts
information on many of its programs online. However, Aging
Committee oversight found that the VA has not consistently made
its websites and other technology accessible for people with
disabilities, as required by law. Including people with
disabilities in VA oversight could help. Senator Scott and I
introduced a bill, S. 2516, the Veterans Accessibility Act, to
give Veterans with disabilities a role in overseeing the VA's
compliance with all federal disability laws, which the
Elizabeth Dole Foundation has endorsed. How does noncompliance
with federal disability laws limit access to VA programs? How
would the Veterans Accessibility Act help ensure that the VA's
programs are accessible for all Veterans and their caregivers?
Response:
"At this time, responses are not available for printing.
Please contact the U.S. Special Committee on Aging for further
updates and to obtain a hard copy, if available."
Senator Kirsten Gillibrand
Question:
Five and a half million caregivers providing vital care for
our nation's Veterans experience high levels of burden,
distress, financial strain, and other negative consequences
like depression. I am pushing to pass the Elizabeth Dole Home
Care Act, which would provide these workers the support they
need. Thank you for your testimony. This bill requires VA to
conduct a review of the use, availability, and effectiveness of
respite services. In what ways would an expansion of respite
care better support the care and quality of life of caregivers?
Response:
"At this time, responses are not available for printing.
Please contact the U.S. Special Committee on Aging for further
updates and to obtain a hard copy, if available."
Senator Kyrsten Sinema
Question:
I appreciate the Elizabeth Dole Foundation's endorsement of
my Veteran Caregiver Re-education, Re-employment, and
Retirement bill and your suggested amendment to eliminate
annual income caps for dependency and indemnity compensation
(DIC) payments to non-spouse PCAFC caregivers. Of the 2500
PCAFC parent caregivers cited in your written testimony, about
how many would be eligible for DIC payments at their current
annual income levels? Do payments from the PCAFC monthly
stipend from within twelve months of a veteran passing count
towards the DIC eligibility income caps, even though the
stipend payments are considered unearned income?
Response:
"At this time, responses are not available for printing.
Please contact the U.S. Special Committee on Aging for further
updates and to obtain a hard copy, if available."
=======================================================================
Statements for the Record
=======================================================================
U.S. Senate Special Committee on Aging
"Heroes at Home: Improving Services for Veterans and Their Caregivers"
June 5, 2024
Statements for the Record
The Alzheimer's Association and Alzheimer's Impact Movement (AIM)
Testimony
The Alzheimer's Association and Alzheimer's Impact Movement
(AIM) appreciate the opportunity to submit this statement for
the record for the Senate Special Committee on Aging and Senate
Committee on Veterans' Affairs joint hearing on "Heroes at
Home: Improving Services for Veterans and their Caregivers."
The Association and AIM thank the Committees for their
continued leadership on issues important to the millions of
Veterans living with Alzheimer's and other dementia and their
caregivers. This statement highlights the importance of
services to meet the needs of our nation's Veterans living with
Alzheimer's and other dementia, as well as their caregivers.
Founded in 1980, the Alzheimer's Association is the world's
leading voluntary health organization in Alzheimer's care,
support, and research. Our mission is to eliminate Alzheimer's
and other dementia through the advancement of research; to
provide and enhance care and support for all affected, and to
reduce the risk of dementia through the promotion of brain
health. AIM is the Association's advocacy affiliate, working in
a strategic partnership to make Alzheimer's a national
priority. Together, the Alzheimer's Association and AIM
advocate for policies to fight Alzheimer's disease, including
increased investment in research, improved care and support,
and the development of approaches to reduce the risk of
developing dementia.
Nearly half a million American Veterans are living with
Alzheimer's - and as the population ages, that number is
expected to grow. In 2022, an estimated 451,000 Veterans were
living with Alzheimer's. The U.S. Department of Veterans
Affairs (VA) has projected the number of Veterans living with
Alzheimer's dementia will increase by 8.4 percent through 2033
to more than 488,000. For Veterans, the prevalence may grow
even faster in future years because they have a higher risk of
developing dementia, as they are uniquely exposed to certain
risk factors. For example, evidence indicates that even mild
traumatic brain injury (TBI) increases the risk of developing
certain forms of dementia. A recent meta-analysis estimated the
increase in dementia risk from any form of TBI was nearly 70
percent. The significant increase in the number of Veterans
with Alzheimer's and other dementias will place a heavy burden
on the VA health care system, and in particular, nursing home
care.
The Alzheimer's Association is deeply grateful for the VA's
comprehensive approach to dementia and the people it affects:
its extensive research, its care and support services within
the Geriatrics and Extended Care program, and its participation
on the Advisory Council on Alzheimer's Research, Care, and
Services. We are particularly appreciative of our joint
pursuits, including the Alzheimer's Disease Neuroimaging
Initiative (ADNI) and the Partners in Dementia Care program,
and we are glad to serve as a resource to the VA as it
continues to balance the protection of its aging Veterans while
encouraging the availability of high quality care.
Home-and Community-Based Services: The Impact on Family
Caregivers and Needs of the Alzheimer's and Dementia Community
We are grateful for the VA's commitment to supporting
Veterans living with Alzheimer's and other dementia by offering
an array of long-term care and support services, such as
assisted living, residential, as well as adult day and home
health care.
Home-and community-based services (HCBS) allow people with
dementia to remain in their homes while providing family
caregivers with much-needed support. These services empower
caregivers to provide quality care for their loved ones while
allowing them to manage and improve their health. While 83
percent of care provided to older adults in the United States
comes from family members, friends, or other unpaid caregivers,
nearly half of these caregivers do so for individuals with
Alzheimer's or other dementia. Of the total lifetime cost of
caring for someone with dementia, 70 percent is borne by
families - either through out-of-pocket health and long-term
care expenses or from the value of unpaid care. In 2023,
caregivers of people with Alzheimer's or other dementias
provided an estimated 18.4 billion hours of informal - that is,
unpaid - assistance, a contribution valued at $346.6 billion.
Several states are implementing innovative solutions to
address Alzheimer's by developing critical, cost-effective,
dementia-specific HCBS programs. These programs are allowing
people with dementia and their caregivers to access services
and support that are uniquely tailored to meet their needs,
allowing them to remain in their homes and communities longer
and enjoy a greater quality of life. Building off of innovative
solutions by several states, the VA through the Veterans Health
Administration (VHA) should consider adopting a core set of
home-and community-based services that are specifically
designed for people with dementia. A core set of HCBS, in
addition to other services, will allow people with Alzheimer's
to continue to remain in their communities and be independent
for as long as possible.
Supporting Veterans' Access to High Quality Long-Term Care
Services
While people living with Alzheimer's and other dementia and
their caregivers often prefer to keep the individual living in
the home for as long as is manageable, they make up a
significant portion of all long-term care residents. More than
60 percent of the VA's costs of caring for those with
Alzheimer's are for nursing home care. Given our constituents'
intensive use of these services, the quality of this care is of
the utmost importance.
While much of the training for long-term care staff is
regulated at the state level, we encourage the Committees to
consider proposals that support state VHA Medical Centers in
implementing and improving dementia training for direct care
workers, as well as their oversight of these activities.
Training policies should be competency-based, should target
providers in a broad range of settings and not limited to
dementia-specific programs or settings, and should enable staff
to (1) provide person-centered dementia care based on a
thorough knowledge of the care recipient and their needs; (2)
advance optimal functioning and high quality of life; and (3)
incorporate problem-solving approaches into care practices.
We also urge the Committees to support VHA Medical Centers
in the following efforts: (1) any training curriculum should be
delivered by knowledgeable staff that has hands-on experience
and demonstrated competency in providing dementia care; (2)
continuing education should be offered and encouraged; and (3)
training should be portable, meaning that these workers should
have the opportunity to transfer their skills or education from
one setting to another.
Conclusion
The Alzheimer's Association and AIM appreciate the
Committees' steadfast support for Veterans and their caregivers
and the continued commitment to advancing issues important to
the millions of military families affected by Alzheimer's and
other dementia. We look forward to working with the Committees
and other members of Congress in a bipartisan way to advance
policies to support the growing population of Veterans living
with dementia and their caregivers.
U.S. Senate Special Committee on Aging
"Heroes at Home: Improving Services for Veterans and Their Caregivers"
June 5, 2024
Statements for the Record
Jack Evans Testimony
Good afternoon. I am providing my written statement to you
because I cannot attend this important hearing.
My name is Jack Evans, III. I am a retired major in the US
Army Reserve, having served in the Reserve Program from May
1983 to May 2008. I live in Enola, Pennsylvania, and have been
married to DiAnn Evans for approximately 35 years.
In 1991, I was diagnosed with diabetes and served the
majority of my military career with this condition. In 2011, I
was diagnosed with kidney failure and started hemodialysis
shortly after this. In 2014, I began doing hemodialysis at home
after my wife, who was a schoolteacher, received training on
how to administer my treatments.
In 2021, my wife and I first applied for the VA Caregiver
Support Program and were subsequently denied. We appealed the
decision, and the VA has yet to respond as of today, June 11,
2024. Following the VA's suggestion, we reapplied for the
program in the spring of 2023, receiving approval. My wife's
and my circumstances did not change between our 2021 and 2023
applications, but the VA's assessment method did. The VA
reviewed my 2021 application through video and voice calls,
while they reviewed my 2023 application through an at-home
visit, allowing them to comprehensively understand my needs.
Due to these discrepancies in assessment, the program
manager at the VA in Lebanon, PA, suggested that we file a
separate clinical appeal regarding the payments we should have
received if the VA had approved us initially. Last week, the VA
denied this appeal, more than two years after our original
application to the VA Caregiver Support Program. In their
denial letter, the VA included incomplete and inaccurate
documentation that they reviewed to make this decision.
For instance, I received surgery in the fall of 2020 and
underwent extensive rehabilitation for two weeks. However,
according to the VA's documentation, I never had surgery then
and only spent one day in rehabilitation. Furthermore, the VA
did not consider my medical records before the fall of 2020,
records from non-VA facilities, or any of my dialysis records,
even though I have received dialysis treatments multiple times
a week for a decade. We are patient, but my wife and I are
entitled to the arrears from this program. That is why we will
appeal this denial until we can access the benefits we deserve.
In saying this, I want to emphasize the following:
The caregiving program's stipend is helpful to my wife,
who facilitates my care. We do not collect a substantial sum
for the time and effort she puts in daily, but spousal
recognition is essential. My wife supported me throughout my 25
years in uniform, and we appreciate the VA's assistance.
Through this program, my wife and I have access to a
group of professionals who can discuss complex medical and
emotional concerns with us, which is significant. A few times,
we used this support system to make difficult decisions
regarding my treatments.
My wife has participated in videoconferences, and she
tells me that these help her learn coping skills and hear from
others with similar issues.
However, finding out about this program and whether we
were eligible was difficult. Like the VA Dialysis Program I
participate in, I learned about the caregiving program via
"word of mouth." It would have been beneficial if the VA had
provided information about this program when my VA Disability
Rating went up to 100%. Depending on how the VA would have
evaluated my situation, I could have been eligible as a full-
time dialysis patient as early as 2014.
In closing, I thank Senators Casey and Tester for their
interest and attention to this critical and consequential
support program.
Respectfully,
Jack O. Evans, III
U.S. Senate Special Committee on Aging
"Heroes at Home: Improving Services for Veterans and Their Caregivers"
June 5, 2024
Statements for the Record
Jacob Johnson Testimony
My name is Jacob Johnson, and I live in Saylorsburg,
Pennsylvania. I'm a native of Russiaville, Indiana, over 650
miles away. I have no family in Pennsylvania other than my 10-
year-old son.
I joined the Marine Corps in 2002 and served until I was
medically separated in 2014. After this, I followed my then-
wife and our 4-month-old son to her hometown in Oregon. We
moved to Pennsylvania in 2016 to be close to her mother, who
lives in Scranton, Pennsylvania. I've had various health issues
related to my service, much of which I believe is burn pit
related, and I have primarily used the VA for my healthcare. My
wife and I separated in 2018, and I've been divorced since
then. I have several disabilities, with extensive PTSD and
mental illness, as well as a brain injury, which I will discuss
later.
In March of 2022, the VA hospital in Wilkes Barre,
Pennsylvania, instructed me to go to the closest emergency room
because I was pretty sick. I was diagnosed with necrotizing
pancreatitis, and my body had begun to shut down. I was in
kidney failure, my lungs were full of fluid, and I was septic.
My doctors didn't think they were going to be able to save my
life, and I spent the next seven months or so in and out of the
hospital. I had drains in my abdomen, requiring flushing and
tracking the amount of infected fluid coming out of my body
twice a day. I was on a plethora of medications for infections,
several other enzymes to keep me alive, and pain medicines that
had to be regulated.
The VA hospital trained my then-girlfriend, Celeste, how to
take care of me. She regulated my meds and kept a logbook of my
drained fluid measurements, which she gave to the home care
nurse, who came once a week to check on us. Celeste bathed me
because I couldn't get my drains wet. Additionally, I could
barely move around or reach anything below my waist. She wiped
my backside because I couldn't even do that due to the drains
from my abdomen and the 100 pounds of fluid I had gained from
my kidneys not working correctly. Celeste forced me to eat
because it was so difficult and painful for me to ingest food.
She would take care of my son, who was eight at the time, which
allowed me to spend time with him.
Celeste also took me to multiple weekly appointments
because I could barely walk or drive. She would pick up my
daily needs and medications because it was too painful for me
to ride in a car. I was unable to communicate my health
concerns to doctors and healthcare professionals due to the
medicines I was on and the effects that sepsis and fevers had
on my brain so Celeste would do this for me. I was a full-time
project, and she took time off from her realtor profession to
take care of me.
As I said, regarding the months and months Celeste spent
caring for me, I was in no mental capacity to make sound
medical decisions. Furthermore, I was in no mental capacity to
advocate for our needs or perform research on which programs
within the VA we might qualify for. Around October of 2022, I
started researching potential health insurance programs for my
kids as I realized I probably wouldn't be on my feet and
working for quite some time. During my research, I stumbled
upon the caregiver support program. My family applied for the
program but was denied because they didn't recognize the level
of care I needed. I still disagree with their assumption as I
look back at where I was mentally and physically.
The VA also denied us any back pay. They told us they would
not retroactively approve any service requests, which is
astonishing. How do you deny a person something they qualified
for when they weren't in any capacity to apply for it?
Celeste's bills and house payments-none of that went away.
Those were all still waiting for her even though she was taking
care of me.
I tried to challenge the decision, but the caregiver
support program manager at the Wilkes-Barre VA Clinic told me
she would have to deny us again because none of my information
had changed. She stated that she wanted to assist, but her
hands were tied due to the legislative nature of the denial.
The VA denied my family something we qualified for because I
wasn't in the mental capacity to research or speak on my behalf
due to a severe illness.
I thought we were doing the right thing in getting me out
of the hospital to heal at home, saving taxpayers thousands of
dollars a day for my care. Veterans are promised help and
assistance from the VA, but they never back up their promises.
I'm not the only person in my area who has dealt with this very
same issue, and it's extremely sad.
Another thing I should note is that the caregiver support
manager told me that each VA clinic has a team of social
workers who are supposed to push this information out, but this
has yet to happen. My family didn't hear from any social
workers until I contacted the caregiver support program manager
in Wilkes-Barre. It was too little too late, though, and she
couldn't do anything for us either. This is a program where
Veterans' caregivers are constantly denied compensation, and
there is nowhere or no one to advocate to for change. It's a
dead-end road.
I was told to call my Senators and Congressmen, so I did
that. I have been fighting this issue for over a year, and it
is just now receiving attention from elected officials. I
understand that you all are extremely busy people, and I can
respect and appreciate that. What I don't understand is the
massive overreach for these small programs. People die and lose
their homes, cars, and electricity, waiting to be heard on
these issues even though the government and VA hires program
managers to address these concerns.
Furthermore, I would say these program managers are more
than capable of making case-by-case decisions for Veterans and
their families who are in need. Taxpayers are left to assume
that their money funds excellent programs through the VA and
that the VA listens to and promptly assists each veteran and
their family. I can tell you this is not the case from my
experience as a veteran trying to utilize the resources I need.
The VA already has the necessary tools and personnel, but they
can't make common-sense, case-by-case decisions for anyone to
access their programs.
I also think "retroactive" processes need to be addressed
if we aren't going to utilize our social workers in a way that
could benefit every veteran. I don't understand how it is so
difficult to notice if a veteran has an illness that could
potentially kill them or leave them and their family in a bad
spot for months on end. It makes us, as Veterans, wonder why
tax dollars go to pay these social workers if no one even knows
they exist, and they don't reach out to families who are in
obvious need of extra services.
Fast forward a year or so - in October of 2023, I had to
call the VA crisis line. I had a mental breakdown and began
contemplating suicide. I was tired of feeling like I was
holding my family back from their lives with everything I had
going on. The fact that Celeste was behind on her mortgage and
other bills had taken its toll on my mental health. I felt as
though the very government that I went to battle for, receiving
injuries in the process, had turned its back on me, my family,
and my loved ones. I also felt that this was my fault, and I
wanted to take myself out of the picture so everyone around me
could move forward with their own lives. I called the crisis
line, but I waited six weeks to receive proper mental health
care.
We hear politicians say, "Twenty-two a day is way too
high." They say, "How do we get that down?" However, to
Veterans, it's more than a campaign slogan. I know more
Veterans who have taken their own lives than I can count on one
hand, but we can change this. Often, it comes down to us
feeling as if we are holding back our loved ones from reaching
their full potential for one reason or another, which is
precisely how I felt.
It is hard watching another human being stress over
finances when you know in your heart and mind that you are the
cause of that stress. Celeste is still digging herself out of
the hole she's in, and no one has reached out to her, saying,
"Hey, we owe you this for taking care of one of ours." She's
never even received a thank you for how she has helped me and
my kids. If it weren't for her, I wouldn't be here today, and
my kids would be suffering as a result. As I close with this
portion of my letter, I ask again that she receive the
compensation she earned while taking care of me, which would
allow her to catch up on mortgage payments and other bills from
when she could not work.
You all have to understand that many Veterans are in my
shoes as they don't move back to their hometowns once they exit
the military and instead follow their spouses and kids to a new
home. You also have to understand that the divorce rate for
veteran families is exceptionally high. With that being said,
many Veterans are divorced, living hundreds of miles away from
their families and friends so they can be close to and have a
hand in raising their kids to be successful in life. We date
new people who aren't familiar with how the VA works, as we're
not that familiar with it until we need to use it. There is an
encyclopedia of programs the VA offers, and no one can ever
memorize all of them. We sometimes can't advocate for
ourselves, and no one steps in to do that for us. There has to
be some way to advocate for the other side of things once we
have our capacities back, and unfortunately, there isn't.
As far as recommendations for improvements:
Implement retroactive approvals for Veterans and their
families in situations where the veteran cannot research
programs during a time of need due to health reasons.
Look at why families are being denied the caregiver
support program at an alarming rate.
If we want to change the suicide rate in the veteran
community, listen to what the Veterans are saying. It seems
from our perspective that many things are assumed and not
discussed.
Ensure VA social workers reach out to Veterans and their
families, especially those outside hospitals, to address their
needs through community care. The Veterans in outside care
facilities are often forgotten about by their VA team.
I hope this information makes sense and you consider it
when drafting legislation significantly affecting veteran
service members and their loved ones. These programs are
designed to do great things for the veteran community, but we
need to ensure they're accessible and that the application
processes are sensible for everyone. I appreciate you all
reaching out to me and hearing my story. Thank you for all that
you do for us and our loved ones.
Respectfully,
Jacob Johnson
U.S. Senate Special Committee on Aging
"Heroes at Home: Improving Services for Veterans and Their Caregivers"
June 5, 2024
Statements for the Record
Jerry Hromisin Testimony
My name is Jerry Hromisin. My wife, Mary Ellen, son, Thomas
"TJ," and I live in Pittston, Pennsylvania. Mary Ellen and I
are sharing TJ's story as his sole caregivers.
In 2005, TJ graduated from the University of Scranton at
the top of his ROTC class and then joined the U.S. Army. In May
of 2007, while leading a platoon of soldiers, he was shot by a
sniper. TJ lost both of his eyes and one-third of his brain,
but he survived against all odds.
When TJ returned home, he was barely functioning. He could
not sit up or walk, and he depended on a feeding tube for
nutrition. TJ also underwent extensive rehabilitation while
recovering from numerous surgeries. At one point, doctors
replaced his skull with polymer, but the procedure failed,
leading to infection, and requiring another complex operation
with years of recuperation.
Mary Ellen and I revolve around TJ. He is the center of our
lives, and we take care of his every need. Because of TJ's
severe brain injury, his life is built on uniformity - every
task must be repeated in the same way and at the same time. For
instance, each morning, I lay out breakfast materials,
arranging dishes and silverware so that TJ won't struggle to
find his food. I check that his shampoo and soaps are on the
correct shelves in the shower, and I arrange his clothes
according to their patterns and colors.
Mary Ellen carefully organizes TJ's many seizure
medications and supplements in containers with dots and Velcro,
but TJ still cannot take them on his own. She is the only one
who knows how to clean, remove, and replace TJ's prosthetic
eyes.
In the time since TJ's injury, we have made many friends at
the VA in Wilkes-Barre, Pennsylvania. They notified us of their
caregiving program, which compensates those caring for their
loved ones full-time. We enrolled, and Mary Ellen began
receiving a small stipend, which was cut by a third after TJ's
first yearly evaluation. Due to the most recent assessment, our
family will be dismissed from the program in September 2025.
The evaluators of this program made their decision after
asking TJ misguided questions over the phone without attempting
to understand his care needs. They said, "TJ, can you walk 10
feet alone?" He answered yes, so they assumed he could call a
taxi, use mass transportation, and travel to his doctor's
appointments alone. In reality, TJ doesn't leave our home
without either Mary Ellen or me at his side - if he did, he
would wander Pittston aimlessly.
Our family's efforts to appeal this decision have failed.
As a result, we will lose our monthly stipend in addition to
support services, such as caregiver teleconferences for
managing stress and book club meetings. The stipend itself is
not much - if the VA had to provide care within a facility for
all of the individuals in the program, their combined stipends
wouldn't cover the cost. However, with this money, I can buy a
few things for Mary Ellen to brighten her day or pay a couple
of our bills.
After September 2025, my family will still eat and provide
constant care for TJ, but receiving the stipend is a matter of
principle. If the VA were ending the program, we would
understand. If the program exists, and there are families
enrolled, while TJ, who lost his eyes and one-third of his
brain in service to our country, is disqualified, then we are
left wondering who truly qualifies.
The VA's caregiving program supports countless families of
injured service members. Please protect and strengthen access
to this program for caregivers like Mary Ellen and I providing
life-saving care to Veterans like TJ.
Thank you for reading our testimony.
Respectfully,
Jerry Hromisin
U.S. Senate Special Committee on Aging
"Heroes at Home: Improving Services for Veterans and Their Caregivers"
June 5, 2024
Statements for the Record
Mark O. Rosensteel Testimony
I joined the U.S. Air Force right out of high school on
February 19, 1980, and went to basic training at Lackland Air
Force Base in Texas for approximately eight weeks, graduating
on April 1, 1980. Then, I went to a technical school in Denver,
Colorado, for three months of intense training in electronics
and optics. I learned how to maintain and operate high-altitude
reconnaissance cameras for RF4C Phantom II Jets.
My unit used RF4C Phantom II Jets, which were flown
extensively during the Vietnam War, for photography,
topographical map-making, and bomb damage evaluation. From 1980
to 1983, the Air Force trained pilots to continue assessments
with these jets and provide photographic reconnaissance of
numerous conflicts, including Desert Storm in Iraq. Several
times, the U.S. Forestry Service commissioned us to use a
special film capable of distinguishing between living trees and
those that had died due to fire, insects, or other causes.
The RF4C Phantom II Jets had six cameras, including one for
infrared photography. These jets also carried magnesium
cartridges, which acted like giant flashbulbs, lighting up the
night sky and allowing us to use standard film cameras.
We had problems from time to time, which you may have seen
in the news. At Shaw Air Force Base in Sumter, South Carolina,
I reviewed film of a plane crash during pilot training. Two of
our pilots had an in-flight emergency and could not return to
base, so they ejected from their aircraft over the ocean.
Usually, search and rescue would find pilots in a matter of
hours, but on this particular day, it was not so.
We flew planes 24 hours a day for ten days, searching for
the pilots, but only found one. On the tenth day, the base
commander called off the search. Even now, putting these words
to paper hurts thinking of that lost pilot and his family. My
unit developed close friendships working with pilots daily and
ensuring their equipment properly functioned for each flight.
However, sometimes, it just didn't work out.
I was at Shaw Air Force Base for approximately eighteen
months before the Air Force transferred my unit to Bergstrom
Air Force Base in Austin, Texas. I worked there until the day
of my injury.
One weekend, we organized a cookout for a friend heading
overseas for a one-year assignment. Everything was going great
until I dove into a swimming pool unmarked for depth. I
immediately snapped my neck, and my new story began.
Paramedics soon rushed me to the hospital. I immediately
spoke with my surgeon, and we worked everything out, or so I
thought. Unbeknownst to me, after putting me on pain
medication, my doctors made decisions without my consent,
causing more damage to my spinal cord. To give you some context
- anytime you are injured, you are covered by the military if
you are wounded within 25 miles of your duty station or on
leave, making my injury 100% service-connected.
If the doctors in Austin, Texas, had fully operated on me,
removing the damaged bone chip from my spinal cord, it would
have reduced the severity of my injury by 90 percent. Instead,
I was transferred to Wilford Hall in San Antonio, Texas, where
I waited two weeks before moving to Cleveland, Ohio. There, at
the nearest spinal cord injury center, I finally had a second
operation to remove the bone chip causing my paralysis.
The next day after surgery, I started to get movement back
in my arms and wrist. Even though I went to therapy five days a
week for the next year, I was never able to move my fingers or
legs again. I tried everything I could to no avail.
Now, I use V.A. facilities for medical care when needed.
Through one of their services, the Homemaker Health Aide
Program, I receive care five days a week, which is a tremendous
help.
The Elizabeth Dole Home - and Community-Based Services for
Veterans and Caregivers Act of 2023, or the Elizabeth Dole Home
Care Act of 2023, compensates Veterans' family members for
their tireless work providing essential care. These programs
save money, keeping Veterans out of expensive nursing homes.
About ten years ago, I had a friend living in a nursing home
who paid $6,000 monthly for a double room. She lived with a
patient who continuously set off alarms all night long, trying
to get her out of bed. The misery she went through in that
nursing home was not fit for a dog. I could discuss this more,
but it would take another two pages. If you have never had the
chance, visit a few nursing homes, which will tell you all you
need to know about how the staff care for their patients.
The VA caregiving program is vital for Veterans with ALS -
amyotrophic lateral sclerosis - and MS - multiple sclerosis.
ALS is highly debilitating, and in most cases, Veterans with
this condition rarely last long enough to receive care before
their paperwork is done. Therefore, I believe these programs
must be reformed and expanded so Veterans can receive fast-
tracked care. It is debilitating for family members left behind
to watch their loved one's health, in some cases, deteriorate
before their eyes.
I have suffered from my condition for 41 years and now rely
on a wheelchair, still doing the best I can to help my fellow
Veterans wherever I go. Over the past few years, an
organization I am involved with, Five Plus with Paralyzed
Veterans of America, has advocated with our legislative
dignitaries, trying to explain how important it is to care for
our fellow Veterans. I understand there is only so much that
can be done at once, but we need to do all we can.
Thank you for this opportunity, Senator Casey.
Respectfully,
Mark O. Rosensteel
U.S. Senate Special Committee on Aging
"Heroes at Home: Improving Services for Veterans and Their Caregivers"
June 5, 2024
Statements for the Record
Rob Grier Testimony
My name is Rob Grier, and I am the son of a United States
Air Force disabled veteran and civil rights pioneer. I reside
in Pittsburgh, Pennsylvania. Since 2010, I have been a
caregiver for my parents, who are aging and have had
significant health challenges.
My mother, an early childhood educator who obtained her PhD
from the University of Pittsburgh, passed away in 2016 after
being diagnosed with Alzheimer's. My father is a proud Air
Force veteran who served our country with honor and now faces
service-connected disabilities. This journey has been both
rewarding and challenging, and I am grateful for the support we
have received from various Veteran Administration (VA) programs
and initiatives.
I would like to extend my deepest appreciation to Senator
Bob Casey and his dedicated staff for their leadership and
unwavering commitment to supporting caregivers and aging
Pennsylvanians. Senator Casey's efforts have significantly
impacted the lives of Pennsylvanians and the rest of the
country, mainly through the Senator's role as Chairman of the
Special Committee on Aging.
I am also profoundly grateful to Senator Elizabeth Dole,
CEO Steve Schwab, and the entire staff at the Elizabeth Dole
Foundation for their relentless advocacy for veteran
caregivers. The Honorable Denis McDonough, leading the
Department of Veterans Affairs, has shown exceptional
leadership in improving VA services. I give special thanks to
Donald Koenig, Director of the VA Pittsburgh Healthcare System,
and Jamie DaPos from the VA Pittsburgh Caregiver Support
Services for their outstanding work. I also give a heartfelt
thank you to Dad's long-time primary care physician, Dr. Maria
Venegas Ortiz. Dad may not be here with us without her care and
professionalism.
Furthermore, I extend my heartfelt thanks to President Joe
Biden for his leadership and dedication to the welfare of
Veterans and caregivers. His commitment to addressing the needs
of our nation's Veterans has been instrumental in driving
positive change. Additionally, I am grateful to Secretary of
Defense Lloyd Austin for his awe-inspiring leadership and
support of initiatives that enhance the lives of service men
and women, Veterans, and their families.
The United States is facing a caregiving crisis exacerbated
by an aging population, a shrinking healthcare workforce, the
impacts of COVID-19, and insufficient funding for social
services. According to the US Census Bureau, by 2050, the
number of Americans aged 65 and older is expected to increase
by 47%, with at least half needing caregiving. This situation
demands urgent attention and action to support caregivers and
their families.
The Pittsburgh VA Healthcare System provides world-class
care for thousands of Veterans across the United States,
setting a benchmark for the nation. Programs like the VA
Caregiver Support Program have been invaluable in allowing me
to care for my father at home. This support has included
training, technical assistance, and access to a network of
professionals dedicated to the well-being of Veterans and their
families. Additionally, the VA's Program of General Caregiver
Support Services (PGCSS), CPR Training, Aid and Attendance, and
respite care have been a tremendous help.
The collaboration between the VA and the University of
Pittsburgh Medical Center (UPMC) is a model of innovation. It
enables clinicians to rotate through different departments and
share best practices, enhancing the quality of care provided to
Veterans and the general public. UPMC practices inclusive care
daily, exemplifying the commitment to integrating caregivers
into the healthcare team. This ensures comprehensive and
holistic care for our Veterans and the public.
Family caregivers can improve the quality of life for
disabled Veterans and help them recover and rehabilitate. A
2015 National Library of Medicine study found that the VA's
Caring for Older Adults and Caregivers at Home (COACH) program
helped Veterans with dementia live longer at home and leave
institutional care more quickly. The Program of Comprehensive
Assistance for Family Caregivers (PCAFC) also supports
caregivers of post-9/11 Veterans who need help with daily
activities or supervision.
The National Institutes of Health research has shown family
caregiving has significant benefits for patients and health
systems because it reduces nursing home stays, inpatient
visits, and formal home care use. Caregivers who care for
Veterans with trauma-based comorbidities reported intensive
caregiving and significant levels of distress, depressive
symptoms, and other negative consequences. These caregivers
require comprehensive support services, including access to
health care, financial assistance, and enhanced respite care.
The planned expansion of VA caregiver support has the potential
to provide positive benefits for this population and serve as a
model for caregiver support programs outside the VA healthcare
system.
Caregiving is critical in reducing loneliness among
Veterans and patients in need. Loneliness is a significant risk
factor for suicide, particularly among Veterans. According to
the National Institutes of Health, the suicide rate for
Veterans is 1.5 times higher than that of the general
population. The suicide rate is 2.5 times higher for female
Veterans compared to their non-veteran counterparts. In 2017,
the veteran suicide rate in the United States was just over 27
suicides per 100,000, compared to 14 suicides per 100,000 among
civilians. Loneliness and social isolation are closely linked
to these alarming statistics.
Research has shown that caregiving helps reduce loneliness
and improve social connections, which are vital in preventing
suicide. Caregivers provide emotional and social support,
creating a sense of belonging and community for those they care
for. By fostering these connections, caregivers can
significantly lower the risk of suicide among Veterans and
other individuals in need.
Caring for my parents has been a deeply personal and
transformative experience. Now, having the ability to support
my father at home means that he can age in a familiar and
loving environment, surrounded by family. This improves his
quality of life and provides a sense of dignity and respect for
his service to our nation.
The programs and resources provided by the VA, the
Elizabeth Dole Foundation, and UPMC have been crucial in
navigating this journey. From training and education to
financial and emotional support, these initiatives have
empowered me to be a better caregiver and advocate for my
father's needs.
These are my recommendations to improve the VA caregiver
program -
Expand Proven Programs: The successful programs that
were most beneficial to us, like inclusive care, home health
aides, respite, and the Post Acute Recovery Clinic (PARC) at
the VA Pittsburgh Healthcare System, should be extended to
other Pennsylvania VA hospitals and hospitals nationwide,
ensuring that all caregivers have access to the best practices
and resources.
Increase Funding and Resources: Social services and
medical care programs need increased funding to meet
caregiving's rising costs and demands.
Promote Private Sector Partnerships: Leveraging the
support of private sector partners like UPMC, Comcast
NBCUniversal, USAA, and AARP can provide additional resources
and innovative solutions to support caregivers.
Support Legislative Initiatives: The Senator Elizabeth
Dole 21st Century Veterans Healthcare and Benefits Improvement
Act, which would make federal funding available for the first
time to local governmental veteran service officers, would help
Veterans navigate the VA benefit landscape in their local
communities.
The caregiving crisis in the United States requires
immediate and sustained action. I am encouraged by the efforts
of Senator Casey and the collaborative initiatives between the
public and private sectors. Together, we can create a future
where caregivers are supported, and aging individuals receive
the care and respect we all deserve. Thank you for the
opportunity to share my journey and advocate for improved
caregiving policies.
Respectfully,
Rob Grier
[all]