[Senate Hearing 119-447]
[From the U.S. Government Publishing Office]
S. Hrg. 119-447
CAUGHT IN THE MIDDLE:
SUPPORTING FAMILIES IN
THE SANDWICH GENERATION
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HEARING
BEFORE THE
SPECIAL COMMITTEE ON AGING
UNITED STATES SENATE
ONE HUNDRED NINETEENTH CONGRESS
SECOND SESSION
__________
WASHINGTON, DC
__________
MAY 13, 2026
__________
Serial No. 119-29
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
64-010 PDF WASHINGTON : 2026
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SPECIAL COMMITTEE ON AGING
RICK SCOTT, Florida, Chairman
DAVE McCORMICK, Pennsylvania KIRSTEN E. GILLIBRAND, New York
JIM JUSTICE, West Virginia ELIZABETH WARREN, Massachusetts
TOMMY TUBERVILLE, Alabama MARK KELLY, Arizona
RON JOHNSON, Wisconsin RAPHAEL WARNOCK, Georgia
ASHLEY MOODY, Florida ANDY KIM, New Jersey
JON HUSTED, Ohio ANGELA ALSOBROOKS, Maryland
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McKinley Lewis, Majority Staff Director
Claire Descamps, Minority Staff Director
C O N T E N T S
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Page
Opening Statement of Senator Rick Scott, Chairman................ 1
Opening Statement of Senator Kirsten E. Gillibrand, Ranking
Member......................................................... 2
PANEL OF WITNESSES
Karla Radka, CEO, Senior Resource Alliance, Orlando, Florida..... 5
Meghan Maher, MPH, End-of-Life Doula & Sandwich Generation
Caregiver, Windermere, Florida................................. 6
Jason Resendez, President & CEO, National Alliance for
Caregiving, Washington, D.C.................................... 8
Josh Protas, Chief Advocacy and Policy Officer, Meals on Wheels
America, Arlington, Virginia................................... 10
Rebecca Preve, Executive Director, Association on Aging in New
York, Albany, New York......................................... 11
APPENDIX
Prepared Witness Statements
Karla Radka, CEO, Senior Resource Alliance, Orlando, Florida..... 36
Meghan Maher, MPH, End-of-Life Doula & Sandwich Generation
Caregiver, Windermere, Florida................................. 42
Jason Resendez, President & CEO, National Alliance for
Caregiving, Washington, D.C.................................... 49
Josh Protas, Chief Advocacy and Policy Officer, Meals on Wheels
America, Arlington, Virginia................................... 60
Rebecca Preve, Executive Director, Association on Aging in New
York, Albany, New York......................................... 74
Questions for the Record
Karla Radka, CEO, Senior Resource Alliance, Orlando, Florida..... 83
Meghan Maher, MPH, End-of-Life Doula & Sandwich Generation
Caregiver, Windermere, Florida................................. 85
Jason Resendez, President & CEO, National Alliance for
Caregiving, Washington, D.C.................................... 88
Josh Protas, Chief Advocacy and Policy Officer, Meals on Wheels
America, Arlington, Virginia................................... 95
Rebecca Preve, Executive Director, Association on Aging in New
York, Albany, New York......................................... 101
Statements for the Record
AARP Statement................................................... 135
Alzheimer's Impact Movement Statement............................ 145
Caring Across Generations Statement.............................. 150
HANYS Statement.................................................. 162
MomsRising Statement............................................. 164
NADSP Statement.................................................. 169
SIFMA Statement.................................................. 172
CAUGHT IN THE MIDDLE:
SUPPORTING FAMILIES IN
THE SANDWICH GENERATION
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Wednesday, May 13, 2026
U.S. Senate
Special Committee on Aging
Washington, DC.
The Committee met, pursuant to notice, at 3:31 p.m., Room
G50, Dirksen Senate Office Building, Hon. Rick Scott, Chairman
of the Committee, presiding.
Present: Senator Scott, Moody, Gillibrand, and Kim.
OPENING STATEMENT OF SENATOR
RICK SCOTT, CHAIRMAN
The Chairman. The U.S. Senate Special Committee on Aging
will now come to order. Right now, across the country, millions
of Americans are being squeezed from both sides. They are
raising children, working full-time, and at the same time
caring for an aging parent who needs them.
I want to thank Senator Kim for talking--he talks about
this quite a bit. We call this group the Sandwich Generation,
and Washington has not done nearly enough to recognize them,
support them, or simply even say, we see you. The numbers are
striking. An estimated eleven million Americans are
simultaneously caring for a child and an older adult.
Many are doing this while working full time, but too many
find that balance impossible. Most are exhausted, overwhelmed,
and doing it all quietly without complaint. One in five family
caregivers has reduced their work hours or left the workforce
entirely to provide care. That is not just personal sacrifice,
that is lost wages and lost retirement savings that compounds
over a lifetime. The estimated economic value of unpaid family
caregiving in this country sees $600 billion every year. These
are sons, daughters, and spouses who have stepped up because
they love someone. Love doesn't pay the bills.
Right now, our tax code, our federal programs, and our
social infrastructure hasn't kept pace with what these families
actually need. That is why I am proud to be working on Multi-
Generational Home Caregiver Credit Act, which will provide
meaningful tax relief to family caregivers who are paying out
of pocket to care of--care of both the child and older adult
relative in their home.
I am also proud to be a co-sponsor of the Alleviating
Barriers to Caregiving Act, which takes important steps to
provide support and flexibility to family caregivers navigating
the complexities of federal programs.
This Committee is not a partisan committee, and these
aren't partisan issues. They are family issues. Let me say this
clearly, we cannot talk--cannot talk about supporting family
caregivers without talking about the Older Americans Act. The
community programs that family caregivers depend on every
single day flow through the OAA.
We are talking about everything from meal delivery to
respite care and caregiver counseling. Reauthorization isn't an
option--it is overdue. I would like now to address the Sandwich
Generation caregivers here today and who join us virtually, we
hear you. We hear your problems, and we are going to try to do
something about it. What you are doing is very hard, is
beautiful and exhausting at the same time, and is one of the
most important things a person can do in their life.
Today, we want to hear your stories, understand your
challenges, and make sure your voices are heard as part of the
record that moves this work forward. We cannot forget that our
focus must also remain on ensuring the resources meant to help
our caregivers--make sure they are protected against bad actors
who try to defraud our Government and them.
People can't be working, doing the difficult work of caring
for their children and parents, to then get ripped off by
Government that lets their taxes go to fraudsters. Fraud
doesn't just steal resources from and damage the integrity of
good programs, it is bad for the American economy.
First, we saw it in Minneapolis, but we've seen it around
the country. Last week we saw new reports from the Daily Wire
about massive caregiving fraud happening in Columbus, Ohio.
This country is almost $40 trillion in debt.
We need accountability to ensure that every taxpayer dollar
meant for caregiving, meant for good people like the witnesses
we have before us today and the millions of Americans they
represent, is going to where it is supposed to go.
We have to stop the fraud and hold the perpetrators
accountable. I want to thank all of our witnesses for being
here today and for the work they do on behalf of caregivers and
the families they support.
What is going to happen is we have three votes, so the
Ranking Member and I are going to have to take turns in the
beginning to chair this and go and we will be right back. Now
let me turn it over to the Ranking Member Gillibrand for her
opening comments.
OPENING STATEMENT OF SENATOR
KIRSTEN E. GILLIBRAND, RANKING MEMBER
Senator Gillibrand. Thank you, Chairman Scott, for today's
hearing. Sandwich Generation caregivers are under extreme
stress to care for their children and aging loved ones at the
same time.
Today's hearing will shine a light on the immense financial
and personal stress that unpaid caregivers are experiencing.
Sandwich caregivers oftentimes step back from their careers--
step back from their career to meet the caregiving demands that
they have. My bill, the Social Security Caregiver Credit Act,
seeks to protect the retirement security of family caregivers.
That stress that Sandwich Generation caregivers experience
will worsen as states grapple with the impact of the Big
Beautiful Bill, which already has many states contemplating
changes to the home and community-based services that help
older Americans and people with disabilities live independently
in their home. In December, this Committee solicited statements
from folks about what these services meant to them.
Seniors and Americans with disabilities from all 50 states
sent us more than 1,000 pages worth of statements just to show
how critical these services are. One New Yorker's testimony
sums up why these programs work. She told me that she supports
community living because it "creates a sense of belonging and
support that strengthens everyone involved."
When the Trump Administration cuts funding for these
programs like home and community-based services, they are not
just striking budget line items. They are gutting the support
networks that help American families stay afloat, seniors age
with dignity, and people with disabilities thrive.
Many of these statements we received are from the Sandwich
Generation caregivers. Home and community-based services, along
with Older Americans Act programs, are lifelines to family
caregivers.
There is no better one to speak about this experience than
someone who lives it every day. With that, I am very proud to
yield the rest of my time to Senator Andy Kim.
Senator Kim. Thank you, Ranking Member Gillibrand. Thank
you, Chairman and Ranking Member for holding this hearing and
working with me on these incredibly important issues.
This conversation hits especially close to home for me. In
April 2024, my father lost his ability to walk after an
accident. It was at that time that we also realized that he had
a rapidly devolving cognition.
Soon after, my father was formally diagnosed with
Alzheimer's, and I stepped into this role as being a caregiver.
This is on top of me being a father to two little boys, on top
being a U.S. Senator. From that point onwards, I joined the
Sandwich Generation, a community made up of millions already
that are--and we know that is only going to grow larger.
The challenges of the Sandwich Generation touch all of our
lives, but too often go overlooked or unnoticed. I bet we all
know somebody managing the care of two or more generations of
loved ones, holding down a job, keeping their family afloat,
while being squeezed on both ends, often feeling isolated and
navigating these challenges alone. Estimates show that there
are over 11 million Americans in this role.
By 2030, baby boomers will be over the age of 65, and the
demand on family caregivers already stretched thin will
intensify, so why is the Committee on Aging talking about the
Sandwich Generation? It is because the care that my aging
father gets now is inherently tied to my ability to navigate,
provide, and help pay for it.
We cannot talk about the care for our seniors without
considering the families and the caregivers that support them.
I cannot be here at this hearing right now without having a
caregiver there with my father right now to ensure his health.
This Committee has a unique ability to help caregivers be seen,
heard, and understood. For two long Sandwich Generation
caregivers have fallen through the cracks of our policy
frameworks.
Part of the problem is that we are in the dark about how
many truly exist, because national data does not ask about
multi-generational caregiving. You cannot build policy on a
foundation you cannot see. That is why today I introduced
bicameral legislation to add a dedicated question on multi-
generational caregiving to national surveys so we can finally
give the Sandwich Generation a permanent place in our national
data.
Understanding starts with listening. That is why I wanted
this hearing today, to spotlight stories too often unheard.
Now, I want to introduce Kathy Lola, who is part of the
Sandwich Generation in New Jersey. It is the stories like hers
that we hear from now on that can best stand up for our
caregivers. I hope we can show the video quickly.
[Video playing.]
Ms. Lola. Chairman Scott, Ranking Member Gillibrand, and
distinguished members of the Aging Committee, thank you for
having me here today to speak. My name is Kathy Lola, and I am
the mother of a 32-year-old with significant intellectual and
developmental disabilities who I continue to care for at home.
Several years ago, my dad was diagnosed with both
Alzheimer's and Parkinson's disease, and I became an important
part of his caregiving team. At that time, I also became a
Sandwich Generation caregiver. Many Sandwich Generation
caregivers don't even recognize our role as caregivers and are
therefore unaware that support services may be available.
From my perspective, as challenging as it was to care for
multiple family members, I was even more overwhelmed by the
complexity of the systems I had to navigate as I attempted to
find services and support for myself and my parents. What would
have made this process easier for us is having someone to guide
us through these confusing and convoluted systems.
Having a central hub of supports and services, as well as a
navigator to assist with the processes, would have made our
journey much easier. Sandwich Generation caregivers deserve
more help and a better and simpler way of securing support for
ourselves and those we are caring for.
[Video ends.]
Senator Kim. Kathy is absolutely right. The system that
caregivers navigate are complex and confusing, and I have felt
that myself. I am so grateful to people like Kathy who are
willing to share their story and be a voice to the challenges
that millions are facing. What we hear today needs to be the
foundation of continued action and progress toward a solution
and relief our caregivers and our families deserve. Thank you,
Chairman, and I yield back.
The Chairman. Thank you, Senator Kim. Thank you, Ranking
Member. Our first witness is Karla Radka, President and CEO of
the Senior Resource Alliance, the Area Agency on Aging serving
Central Florida.
Ms. Radka leads an organization at the Center of the
Caregiving Support Network in one of the fastest growing
regions in the country. She knows firsthand what family
caregivers are asking for, where the gaps are, and what it
takes to deliver real services to real people in the
communities. Please begin your testimony.
STATEMENT OF KARLA RADKA, CEO, SENIOR
RESOURCE ALLIANCE, ORLANDO, FLORIDA
Ms. Radka. Chairman Scott, Ranking Member Gillibrand, and
distinguished members of the committee, thank you for the
opportunity to be here today. As an Area Agency on Aging (AAA),
we serve older adults, caregivers, and families every day who
are navigating one of the most pressing and personal challenges
facing the nation-the caregiving crisis.
In 1973, the AAAs were formally established in the Older
Americans Act, OAA, as the on the ground organizations charged
with helping vulnerable older adults live with independence and
dignity in their homes and communities. For more than 50 years,
the AAAs have served as local leaders in aging by planning,
developing, funding, and implementing local systems of
coordinating aging and other home and community-based services.
While the National Family Caregiver Support Program was not
added to the Older Americans Act until 2000 as Title III-E,
AAAs have supported families and caregivers of older adults for
decades. At Senior Resource Alliance, we use this essential
funding to offer family caregivers a number of critical
services to shore up their own efforts including information,
resources, individual counseling, respite care, so they can
take care of their duties and assist caregivers in lightening
the road as they provide quality care for their loved ones.
As my and other AAAs across the country continue to support
family caregivers, there one population that continues to stand
out, the Sandwich Generation. There are millions of Americans
who are caring for aging parents while raising children,
working full time, and trying to remain financially stable.
This is not an abstract policy discussion. There are real
people such as teachers, nurses, small business owners that are
doing everything right and still struggling to hold it
together.
The average Sandwich Generation caregiver for a Medicare
recipient is 44 years old, significantly younger than
caregivers without children under the age of 18, which average
is 61 years old. For Sandwich Generation caregivers who are
employed, many report reducing their work hours as they take on
dual responsibilities caring for both older adults and young
children. Reducing hours and workforce for a caregiver also
reduce their income, which put them in a struggle.
At our organization, this is a very real challenge we face
every day. I would like to share with you the story of Grace.
Grace is a mother of three children and also the sole caregiver
of her father who is living with dementia.
She wakes multiple times during the night to manage her
father's medications and schedule medical appointments. The
reality of having to juggle life and workforce and be on the
workplace, and also caring for children, is actually a very
heavy burden that she has to live in. She actually shared with
us that she is failing at everything, at her work and at home.
However, our organization has been able to support her with
referrals through our provider network and to provide respite
care for her. She has been to manage this situation in a very
effective way. The reality is that many of our caregivers are
one paycheck away from crisis. They are not looking for
handouts. They are looking for flexibility. They are looking
for that opportunity to be able to have support and to provide
quality care for their loved ones, our older Americans.
In terms of what the Congress can do to really support
caregivers, especially the Sandwich Generation, well, the
approval, the authorization of the Older Americans Act and the
program Title III-E, which is the program that provides that
respite care that is so necessary to be able to continue to
provide services. Also, other bills that are in Congress that
are part of my written testimony.
Caregiving does not happen in silos; it is a family affair.
Supporting this ecosystem of older adults, caregivers, and
multigenerational families working together is both sound
policy and good business.
It really is good for the workforce, it is good for
families, and it is to continue to help seniors, elder
Americans to age in place in the communities they love, where
they volunteer, where they worship, where they have work. It is
important.
The Sandwich Generation is holding on two other
generations, so they don't have to do it alone. Thank you for
allowing me to present in front of all of you and to carry the
voice of the families that we serve every day. Thank you.
The Chairman. Thank you, Karla. Next, I am honored to
introduce Meg Maher, who also joins us from her home State of
Florida. She is here today, not as a policy expert or program
administrator, but as a caregiver.
She has lived the Sandwich Generation experience, balancing
the demands of raising a family while caring for an aging loved
one, and she has agreed to share that story with us here today.
It takes courage. Voices like hers are exactly why we hold
hearings like this in Washington, DC. We need to hear directly
from the people these policies are meant to serve. Thank you
for being here today, and please begin your testimony.
STATEMENT OF MEGHAN MAHER, MPH,
END-OF-LIFE DOULA & SANDWICH
GENERATION CAREGIVER, WINDERMERE, FLORIDA
Ms. Maher. Chairman Scott, Ranking Member Gillibrand, and
members of the Committee, thank you for the opportunity to
speak today, and for your leadership in advancing legislation
that recognizes and supports family caregivers.
My name is Meghan Maher. I live in Florida, and I am a
sandwich caregiver. I am raising two school aged children while
also providing ongoing support to my father and his wife. I am
also an only child. There is no one to share this role with.
Whatever needs to happen, I am the one. I care for my family
because I love them. That love is not a burden. It is the
reason.
Everything I share today comes from that. My caregiving
began in 2013, seven weeks after my oldest son was born, when
my mother was diagnosed with stage four breast cancer. I have
never known motherhood without also being a caregiver. A few
years later, as my mother's health declined, my parents moved
into our home.
I had a toddler and a baby. I was providing hands-on care
for my mother while raising young children. That is what
sandwich caregiving can look like at its most literal, a dying
parent in one room, a baby in another, and you in the middle.
My mother died in 2017. Three months later, my father became
critically ill. There was no pause. Caregiving does not observe
a mourning period.
My father survived that crisis, but my role as his
caregiver never truly ended. Today, he is in the early stages
of mild cognitive impairment. The type of support I provide has
changed, but it has not lessened. I attend medical, legal, and
financial appointments in person and on the phone. I track
changes, manage communication, and help navigate decisions. I
support him and his wife across state lines because they split
their time between Florida and South Carolina.
I am the thread of continuity in his care and all of that
exists alongside raising my children who need a present mother.
The hardest part is not any one responsibility. It is that
every role matters. There is no version of this where everyone
gets enough of me. Many of--much of this work is invisible. It
is coordination, advocacy, communication, problem solving,
tasks, and holding the full picture. It runs in the background
of every day, and it is unpredictable. Care needs don't follow
a schedule.
Even when resources are available, care is not necessarily
accessible. You cannot always find trusted support on short
notice. The barrier is not only cost, it is logistical,
administrative, and ongoing. Families and care providers are
both doing the best they can within a system that was not
designed for how caregiving actually unfolds. Caregiving has
also reshaped my professional life.
I am self-employed in large part because traditional
employment could not accommodate the unpredictability of being
a sandwich caregiver. The flexibility of self-employment comes
with real, financial, and professional tradeoffs. There is a
cost to carrying all of this, and it lives in the body. It
affects sleep, health, and well-being. It means deferring your
own medical appointments because there is often something more
urgent. The loneliness of it also goes unspoken.
There is particular kind of isolation that comes from being
the person who holds the full picture. Even when you are not
physically alone, you are the one holding it all the time. My
experience is not unique. That is exactly the problem. There
are millions of sandwich caregivers across the country, largely
without systems that recognize or support the full scope of
what they are carrying.
Families like mine do this because we love each other, but
love is not a policy. Caregivers need systems that reflect the
reality of what this requires, flexible support, accessible
care, and infrastructure that accounts for the full scope of
this role. Thank you.
The Chairman. Thank you, Ms. Maher. Now, I would like to
introduce Jason Resendez, President and CEO of the National
Alliance for Caregiving, the Nation's largest leading non-
profit research and advocacy organization focused exclusively
on family caregiving.
He brings a national perspective to the caregiving crisis
backed by research, data, and years of experience working
across the policy landscape to advance support for family
caregivers of all ages and backgrounds. Please begin your
testimony.
STATEMENT OF JASON RESENDEZ, PRESIDENT & CEO,
NATIONAL ALLIANCE FOR CAREGIVING, WASHINGTON, D.C.
Mr. Resendez. Chairman Scott, Ranking Member Gillibrand,
and members of the Committee, thank you for the opportunity to
speak today about the crisis facing our Nation's Sandwich
Generation caregivers, the millions of Americans caring for
children and adult at the same time, often invisibly and almost
always without enough support.
This is an issue that is deeply personal to me, and I know
for many of you. I grew up watching my mom balance a full-time
job while raising three kids and caring for my grandmother
through multiple chronic conditions. It was tough work, and she
did it out of a deep sense of love and commitment to her
family, but also out of a necessity.
There were no alternatives in our small South Texas town.
For as long as I can remember, my mom dreamed of becoming an
accountant, but she was never able to finish college. Her dream
took a backseat to her caregiving responsibilities and the cost
wasn't just a degree. It was a lifetime of lower wages, fewer
opportunities, and a smaller retirement because the years she
spent caring for her mother didn't count toward Social Security
the way that paid work does and my family's story isn't unique.
According to research from the National Alliance for
Caregiving, which I lead in AARP, there are 63 million adults,
nearly one in four Americans, now providing ongoing demanding
care to a family member or friend with a serious illness or
disability. That is a nearly 50 percent increase in just a
decade.
Sixteen million are Sandwich Generation caregivers, raising
a child or a grandchild at home while caring for an adult loved
one. That is about one in three family caregivers in the
Sandwich Generation. The typical sandwich caregiver is a woman
in her early 40's, more than a decade younger than the average
caregiver, juggling three roles at the same time, a job, her
kids, and a loved one who needs care.
This work is not occasional. Sandwich caregivers provide an
average of 22 hours of care each week, a part-time job on top
of their parenting. More than 60 percent perform medical or
nursing tasks at home, managing medications, dressing wounds,
changing feeding tubes, and four in ten do so without any prior
training. These are ordinary Americans providing extraordinary
care, and the economic toll is severe. Fifty-eight percent of
sandwich caregivers experience at least one negative financial
impact, like taking on debt, depleting savings, losing income,
or leaving the workforce entirely.
These are people in the prime earning years, and the costs
compound across decades into smaller retirements and tighter
household budgets. The personal toll runs alongside the
financial. One in three sandwich caregivers reports high
emotional stress, and many say caregiving has worsened their
own health. Most did not choose this role, it found them.
The overwhelming majority tell us they need more help to
make this care work. Make no mistake, this is work. AARP
estimates that family caregivers now provide more than $1
trillion worth of care each year. They are the invisible
backbone of our economy and our long-term care system. Family
caregivers are clear about what would make a difference. They
need meaningful financial relief to offset the rising out of
pocket cost of care.
They need a retirement system that recognizes caregiving as
the work it is. They want paid family and medical leave to help
balance the responsibility of caring for a loved one while
working. They need easier access to the fragmented maze of
benefits and supports that so many struggle on top of the hard
work of care to access. There is legislation before Congress
that responds directly to each of these needs.
The Multi-Generational Home Caregiver Credit Act introduced
by Chairman Scott and Senator Welch would provide tax relief to
families providing care across generations. The Social Security
Caregivers Credit Act, championed by Ranking Member Gillibrand
and Senator Murphy, would credit caregivers up to five years
toward their Social Security benefits.
The Alleviating Barriers for Caregivers Act from Senators
Markey and Capito would identify ways to reduce the
administrative burden on family caregivers as they try to
access programs like Medicare or Medicaid. The Senior Act from
Chairman Scott and Senator Smith would address caregiver
loneliness as the public health concern that it is.
The Family Act, championed by ranking member Gillibrand,
would establish our Nation's first-ever paid family and medical
leave program. Paired with reauthorization and robust funding
for the Older Americans Act, these bills would bring us closer
to a society that truly values and invests in family
caregivers. Senators, my mom gave up her degree, her career,
and her financial future to care for the woman who raised her.
Millions of Americans are doing the exact same thing right
now across this country, and they deserve better. We have the
data. We have solutions. We have 63 million reasons to act.
What we need now is the leadership that matches the sacrifices
of our Nation's Sandwich Generation caregivers. Thank you, and
I look forward to your questions.
The Chairman. Thank you, Mr. Resendez. Now, I would like to
introduce Josh Protas, Chief Advocacy and Policy Officer at
Meals on Wheels America, the national leadership organization
supporting the network of more than 5,000 community based
senior nutrition programs operating in communities across the
country.
He understands better than almost anyone what it means when
older adults can stay safely in their homes, and what is lost
when the programs that support them go underfunded or
unauthorized.
That connection between community services, federal policy,
and family caregivers is at the heart of what we are exploring
today. Please begin your testimony.
STATEMENT OF JOSH PROTAS, CHIEF ADVOCACY
AND POLICY OFFICER, MEALS ON WHEELS
AMERICA, ARLINGTON, VIRGINIA
Mr. Protas. Good afternoon Chairman Scott, Ranking Member
Gillibrand, and members of the Committee. Thank you for the
opportunity to testify at this hearing. My name is Josh Protas,
and I am proud to serve as the Chief Advocacy and Policy
Officer for Meals on Wheels America, here on behalf of a
nationwide network of more than 5,000 community based senior
nutrition programs serving older adults in nearly every
community. For millions of families Meals on Wheels starts with
a nutritious meal, but it offers so much more.
It is a knock on the door, a safety check, a moment of
human connection, or a referral to other supportive services
and peace of mind for an adult daughter or son who is trying to
work, raise children, and care for an aging parent all at the
same time. The underpinning of all of this is the Older
Americans Act.
The Meals on Wheels service model sets the gold standard
for a successful public-private partnership, working to reduce
nutritional risk and social isolation while saving taxpayer
dollars by ensuring that older adults live safer and longer in
their own homes, and keeping them out of costly health care and
long-term care settings.
We can provide Meals on Wheels services to a vulnerable
older adult for an entire year for roughly the same cost as one
day in the hospital or twelve days in a nursing home but
federal funding has not kept pace with the increasing need
among our Nation's rapidly growing senior population and rising
costs for food, fuel, and program operations.
One in three meals on wheels providers report keeping a
waitlist with seniors waiting an average of four months for the
care they need and deserve. Too many families are left to
absorb the consequences on their own. That challenge is only
growing with 12,000 people in America turning 60 years old
every day and more older adults struggling to afford their
basic needs.
The number of seniors with low or very low food security
quadrupled between 1999 and 2023. Over the same period, the
buying power of federal funding for the OAA nutrition program
actually decreased, and the program was serving meals to
roughly the same number of seniors in 2024 as it did 25 years
earlier in 1999.
This results in escalating unmet need. MAG Aging and Family
Services in Orem, Utah shared that, "Due to lack of funding, we
have had to resort to removing clients who have in-home support
from family members. Our waiting list continues to grow. This
has resulted in a lot of panicked seniors and caregivers who
are heavily reliant on our program." When community programs
cannot keep up, the burden shifts onto family caregivers who
are already stretched thin. That can mean more missed work,
more stress, more out of pocket costs, and more fear that a
loved one is going without food, safety, or connection.
For these families, Meals on Wheels can bridge the gap
between what they want to provide and what they can
realistically do on their own. This is especially important for
caregivers who live at a distance and cannot be present every
day. This matters because the older adults served by Meals on
Wheels are often the most vulnerable in our communities. Many
live with multiple chronic conditions, limited mobility,
cognitive decline, disability, or social isolation.
Without dependable support, they face greater risk of
malnutrition, falls, hospitalization, and premature nursing
home placements. The relatively small upfront federal
investment to provide Meals on Wheels services is smart fiscal
policy because it prevents more costly interventions
downstream. Plus, when we support seniors being able to live
independently at home, we reduce the strain on already
overburdened hospitals and nursing homes.
When Satish reached out to Meals on Wheels, etcetera in
Sanford, Florida for help, he couldn't stand for long and was
dealing with diabetes, memory loss, and repeated falls that
made cooking dangerous. Some days, he would just go to bed
hungry. Satish had to be placed on a waitlist with more than
400 other seniors due to funding constraints. He waited three
long years for support.
While he waited, his energy dwindled, and his world shrank.
When a meal slot finally opened up, his life changed overnight,
and he regained his strength, independence, and a sense of
connection. He said, "Meals on Wheels is lifesaving. For people
like me, it means everything." For caregivers, this kind of
support can be the difference between staying in the workforce
and cutting back hours, between stability and crisis, between
constant fear and peace of mind.
Meals on Wheels cannot solve every challenge that families
caught in the middle face, but it can remove some of the daily
pressures that push families to the breaking point. During his
historic visit with Meals on Wheels in Central Maryland last
year, Secretary Kennedy noted the importance of strong support
so the Meals on Wheels programs can reach all in need. "History
will judge the humanity of our civilization by how we care for
our elderly," he said. "Meals on Wheels does not just provide
nutrition for the malnourished. It combats the epidemic of
loneliness through daily acts of care and compassion. President
Trump has asked us at HHS to continue supporting Meals on
Wheels so that no American in their twilight years feels
forgotten." Vulnerable seniors, their caregivers, and the Meals
on Wheels providers that serve them are still waiting to be
prioritized.
It is time to end the wait. I urge you to prioritize
increased funding for Meals on Wheels and other Older Americans
Act services as essential supports for both seniors and their
family caregivers. Thank you again for holding this hearing on
this important topic and for your bipartisan leadership on
behalf of older Americans and their families.
STATEMENT OF REBECCA PREVE, EXECUTIVE DIRECTOR,
ASSOCIATION ON AGING IN NEW YORK, ALBANY, NEW YORK
Ms. Preve. Thank you to Chairman Scott, Ranking Member
Gillibrand, and Senator Kim for allowing us to testify at this
hearing today. I am with the Association on Aging in New York,
and I have the distinct honor to represent the 59 Area Agencies
on Aging in the State of New York that do incredible work, day
in and day out, not only for older New Yorkers, but also for
family caregivers.
I want to start the conversation by framing it, because I
think ageism is something that we see throughout not only
legislative priorities, but also funding. I want to highlight
that supporting family caregivers and older Americans should be
an expectation, not an afterthought.
Older Americans contribute one-third of the overall
economic impact and output in this country and are worth over
$9 trillion annually. From an equity perspective, they deserve
to be supported, as do their caregivers. Family caregivers, you
have heard from my colleagues today, are the backbone of the
economy and the Nation, and they are largely invisible in
policy and funding decisions.
Across the United States, more than 60 million caregivers
provide essential support to loved ones with a chronic illness,
a disability, or age related needs. Nearly one in four adults
is a caregiver, and most provide this without any form of
compensation. These caregivers are not just helping families.
They are sustaining our entire health care system. In New
York alone, more than 4.1 million caregivers provide
uncompensated care to the tune of $58 billion per year in
economic activity. Nationally unpaid caregivers exceed $1
trillion to this country and yet we are failing to support
those Sandwich Generation caregivers.
At the same time our demand is rapidly rising--we now have
between 75 and 80 million adults over the age of 60. That
number continues to grow. Many caregivers are part of the
Sandwich Generation, balancing care for aging relatives while
raising children including those with disabilities who live in
an entirely different ecosystem than aging services do.
One in three family caregivers are Sandwich Generation and
they face the highest incidence of documented mental health and
workforce impacts. These individuals face intense competing
demands on their time, their finances, and their overall well-
being. Research indicates that 85 percent of Sandwich
Generation caregivers report at least one adverse mental health
impact.
Serious suicidal ideation exists in 50 percent of Sandwich
Generation caregivers in the past 30-day period, which is eight
times the odds of the normal adult population. The strain on
caregivers is only increasing as our long-term care system
undergoes significant change.
Since 2020, the U.S. has lost more than 750 skilled nursing
facilities due to workforce shortages, rising cost, and
financial instability. When these facilities close, the need
for care does not disappear. It is transitioned to community-
based settings and mostly on family caregivers.
At the same time, H.R. 1 and the reduction in Medicaid
funds, new eligibility requirements and assessments will make
access to home and community-based services harder to obtain
and further push individuals to Area Agencies on Aging that
already have enormous waitlists. Despite these stark realities,
federal investment in caregivers has not kept pace. Under the
Older Americans Act, the National Family Caregiver Support
Program receives only about $200 million annually.
That is less than 10 percent of all OAA funding. This is a
small fraction compared to the economic value caregivers
provide every year, and the consequences of the imbalance are
significant. For working caregivers, responsibilities often
mean reducing hours, taking unpaid leave, or leaving the
workforce entirely, leading to lost wages, reduced retirement
savings, and long-term financial insecurity.
Additionally, caregivers spend more than the general public
out of their own pockets each year, almost $10,000 in
additional funds. We have over four million workers that have
left for caregiving roles since the COVID-19 pandemic at an
economic cost of $44 billion in lost wages. I want to talk for
a moment about Area Agencies on Aging and why they contribute
to the cost savings to not only caregivers, but the Medicaid
system.
Our average client statewide, if you looked at all our
programs and services, is an 83 year old low income female who
lives alone, has four to ten chronic conditions like diabetes
and congestive heart failure, needs assistance with activities
of daily living, like bathing, toileting, and dressing, and we
are serving them in their homes and communities on average for
seven years for less than $10,000 a piece.
If that individual was assessed for nursing home or
assisted living placement, they would qualify to the tune of
$150,000 on the Medicaid scorecard. Again, I want to highlight
New York, and I really want to comment on our state unit on
aging and the Director of NYSOFA, Greg Olsen, who is leading
the Nation in innovations.
What we are asked here today is to come up with solutions
to some of these problems and New York has done exactly that.
We first looked at how we could support caregivers and taking a
real temperature of what was happening with caregivers in the
State of New York. Under Commissioner Olsen's leadership, the
state went through a comprehensive working caregiver initiative
where they not only surveyed state employees, but they also
surveyed private sector employees.
They found exactly what we have talked about today, that
people really need to be supportive because they are either
leaving the workforce entirely, they are reducing their hours,
they are having mental health adverse effects. We came up with
the solution. We know that workers need to be supported and
have access to services, or these things happen to them.
NYSOFA's response was to provide free for any New Yorker
under the New York Caregiver Portal an evidence based online
platform known as Trualta, which is supporting thousands of
caregivers across the State of New York and has actually booked
about $11 million in savings from a delay in skilled nursing
facility placements and caregiver support in the community that
reduced emergency department visits.
We also have partnered with Any Care Counts New York, which
is using the caregiver intensity index to quickly within two
minutes assess the caregiver and determine are they in the red,
yellow, or green--which, do they have a mental health impact,
are they doing okay, are they not? Then you are instantly
linked to resources that assist you, including localized
resources for the State of New York but also in every state in
the Nation.
State innovation alone cannot meet the scale of this
challenge though. Federal leadership is essential. We are
respectfully urging Congress to take the following actions.
Increase funding for the National Family Caregiver Support
Program and all of the Older Americans Act programs that have
been spoken about today.
Provide direct financial relief to caregivers through tax
credits, stipends, and expanded Medicaid support. Strengthen
workplace policies, including paid family and medical leave and
flexible work arrangements to help caregivers remain in the
workforce. Ensure caregivers have access to training. Maintain
the independence of the Administration for community living as
a federal authority dedicated to aging and disability services,
and reauthorize the Older Americans Act, and know that family
caregivers are critical, yet often invisible part of our
national healthcare infrastructure. They allow millions of
older adults and individuals with disabilities to remain in
their homes and communities, while saving the system billions
of dollars each year.
It is time to move beyond recognizing caregivers as heroes
and instead provide the policies, funding, and support they
need to continue this essential work. Thank you.
Senator Gillibrand. I would now like to call on Senator Kim
for his questions.
Senator Kim. Thank you, Ranking Member. Thank you all for
your comments here today. Ms. Maher, I would like to start with
you. Just first of all, thank you for sharing and when you
talked about just the isolation and the loneliness that you
feel, I feel it too. I know many others do as well.
I hope by hearing your story, hearing my story, hearing
what we are talking about here today, I hope many that feel
invisible, feel lonely, recognize that, no, that there is many
going through this together.
As you said, you know, look, many of us are ready to step
up for our loved ones and try to help. You know, we are not
asking for the moon. The way I sort of say is like, but it
still doesn't have to be this hard, you know. I think one thing
that stood out in your comments that I hear from so many others
is many of enter the Sandwich Generation--first of all, I
didn't even fully understand that term and then someone came up
to me was like, oh, you are part of the Sandwich Generation. I
am like, I guess.
Like, you know, you are just so far deep in it, you don't
even time to step back sometimes and even assess that but what
you said I think stood out, that I hear from so many others, is
that many of us enter this designation of Sandwich Generation
through crisis.
You know, I had this circumstance where my father is
literally going through surgery. You know, we are finding all
sorts of other problems simultaneously. Now all of a sudden, I
am being asked to make decisions about his health. I am being
asked to understand, you know, his Medicare levels.
I am trying to understand this financial security. When I--
you know, I was not, you know, somebody that had, you know,
attorney privileges or had any other access. I think just
initially, I was just overwhelmed.
I guess I just wanted to ask you to kind of talk through
this, like the complexity of navigating, you know, Medicare,
health care, you know, the financial systems and other things
to be able to assess. Can you talk a little bit about how that
affected you?
Ms. Maher. Absolutely. Much of what you said resonates with
me. Certainly with my mom, I kind of call it, I didn't know
what I didn't know. As far as supports and services that might
be available through federal or community programs, I had no
idea.
When moving through health care providers, the hospital
systems, discharge planners, we were never told about anything
that might be available for families like us. I didn't know
what was there.
What you spoke about where you are kind of initiated in--at
a critical moment and suddenly you are the health care
surrogate, and you are making decisions. I did not have to do
that for my mom, and my dad and I have had many conversations
and planning meetings ahead of time about that, but I know that
is not the case with--for many families. They are kind of
launched into this having no idea maybe what their older loved
one even wants. Maybe their older loved one doesn't even have
advanced directives.
Maybe they haven't even made that decision for themselves,
and then they are left kind of guessing.
Senator Kim. Yes. No, I think that that planning and trying
to have that opportunity is something I am trying to help
engage, but also who we turn to, you know, for that and Mr.
Resendez, I wanted to turn to you.
You know, there was a quote that stood out to me when I was
reading about the, you know, the start of Medicare for
instance. You know, President Johnson and Truman did this press
conference together.
There is a line I wanted to read to you. Says, "no longer
will illness crush and destroy the savings that they have so
carefully put away over a lifetime so that they might enjoy
dignity in their later years. No longer will young families see
their own incomes and their own hopes eaten away simply because
they are carrying out their deep moral obligations to their
parents and to their uncles and their aunts." I wanted to ask
you, do you feel like this original promise is being born out
in full right now, or do we still have work to do?
Mr. Resendez. We have--we have come a long way, I will say
that, in terms of the role of Medicare's recognition of the
importance of supporting the health of older adults across the
country. In terms of the way that we are investing in the
health older adults.
We see that borne out by the longevity boom that we are
experiencing in this country but yet we have a tremendous road
still ahead. We are living longer, but we are living longer in
poorer health, and because of that, the demands on family
caregivers have only increased. One area where Medicare has not
kept up is in recognizing the role that family caregivers play
in supporting Medicare beneficiaries.
In terms of providing direct support for family caregivers,
navigating what is complex care, right. Changing wound
dressings. The feeding tubes, PICC lines. These are things that
have historically taken place in acute care settings, certainly
in the time when the program was established. It is now more
and more happening in the home and yet family caregivers
receive very little support and training.
That is starting to change in the Medicare program, and I
think that is the next frontier as policymakers start to think
about modernizing Medicare to rise to the moment that we are in
for family caregivers.
Senator Kim. No, thank you so much. I agree wholeheartedly.
We have made great progress and I read that quote not to
necessarily say, you know, we have not made more progress, but
to try to recommit ourselves at this point to try and to follow
through to that original goal. That we can have that sense of
stability and security at a time when we are living longer,
that we are finding ourselves sometimes in poor health, but we
are also seeing health care expenses significantly higher than
where we saw before. Families spread out further and other
challenges. One last thing I wanted to just ask Mr. Resendez is
that, you know, I recently just introduced, as I said, this
legislation today called the Multi-generational Caregiving Data
Act, mostly because I am just trying to, again, make sure that
we are being seen, that we understand, and we can make real
rational decisions based off of that data. I wanted just to ask
you what you think--you know, whether or not you think that the
lack of this comprehensive data so far has hurt our ability to
fully understand what is the effects of multi-generational
caregiving in terms of the limits on our abilities to fully
understanding what these families need, and how this data might
be able to help policymakers, help us identify some of the gaps
that are out there. You know, we hear the anecdotal stories
that are so powerful, but what is it that the data can do to be
able to help us drive toward solutions going forward?
Mr. Resendez. Absolutely. Thank you, Senator Kim, for your
leadership and advancing that piece of legislation. Data is
absolutely critical to helping us understand the full scope of
the challenges that family caregivers face, particularly
sandwich caregivers. Having better data gives us the ability to
make better decisions to understand how caregiving changes
state to state, federal program to federal program.
Data absolutely can help drive change and help drive
accountability, right. We are not going to change what we don't
measure. By having stronger data systems in place, we can hold
ourselves accountable.
We can hold policymakers accountable. We can hold states
accountable for the progress they are making in responding to
the data that starts to come in because of these new tools and
measurement opportunities.
Senator Kim. Well, thank you so much. Chairman, again,
thank for holding this hearing. Working with me on these--you
know, we have some real ideas. You have ideas. The Ranking
Member, myself, and others.
You know, I hope that this Committee can really try to
accelerate that. The hearing is really wonderful, but what our
caregivers, what the Sandwich Generation needs is real
solutions, and I am grateful that you are willing to be part of
the effort to be able to deliver that. Thank you, Chairman
The Chairman. Well, Senator Kim, thank you for caring about
this, and thank you for your focus on this. Ms. Radka, the
Senior Act includes provisions specifically designed to support
multi-generational families and connect them to the broader
community services network.
From your experience operating at the local level, how
important is it that federal agency policy thinks about the
whole family unit rather than just the older adult in
isolation? What does it mean for how you design and deliver
programs?
Ms. Radka. I think that supporting multiple generation
households and to be able to support the whole family as a
whole is a good business, because what we are talking about in
here is that caregiving is not done in silos. It is a family
affair, and when we support the family, we heal the world.
We are taking care of the family as whole unit, and
especially in multi-generational families where the
grandparents create an incredible environment for
grandchildren. The studies and research show us that when
grandparents are present on the life of a person younger than
18, there is less anxiety and less turmoil.
Then we know that for grandparents that are dealing with
isolation, the presence of grandchildren is essential for
quality of life. We have multiple families, and especially in
minority communities where multi-generational families are part
of the whole household.
Then providing that support to maintain that unit is a good
business. It is good for the workforce because the caregiver
can continue to have a presence on the workforce and take care
of their financial resources and be a part of a financial
contributor to the family. It is for the quality of life for
the senior and it is good children who learn responsibility and
compassion by having the elderly--older Americans living at
home.
The Chairman. Thank you. Ms. Maher, one of the things we
hear from Sandwich Generation caregivers across the country is
that even when they can afford to pay for some help at home,
the system makes it entirely impossible to get it. Home care as
your agency--often require a minimum number of hours per visit
or per week.
For a family that just needs a few hours of intermittent
help, those minimums can make professional home care completely
out of reach. Has that been your experience? What could you--
when you could not get the flexible, affordable help you
needed, who filled that gap? Was it you or somebody else?
Ms. Maher. Thank you for talking about this important and
often unseen part of sandwich caregiving. This is absolutely--
probably one of the largest challenges of sandwich caregivers I
ever had, it was when I was caring for my mom and my dad when
my sons were younger and their hands-on caregiving needs were
different than they are now.
It was virtually impossible to find trusted support,
intermittent care for them when I wanted to go with my mom to
her infusions or oncology appointment, or with my dad. It was
very difficult to find that type of care.
When we did find somebody that we trusted, we ultimately
chose to have her come for more hours every week than what we
ultimately needed to be able to have here and have her
available. Because when you find somebody you trust, you do
whatever you can to keep them.
The Chairman. Thanks. Mr. Resendez, I have been working on
the Multi-generational Home Caregiver Credit Act, which would
provide direct tax relief to family caregivers who are
supporting both a child and an older adult in their home. From
a research and policy standpoint, what does the evidence tell
us about the financial burden facing these families, and why is
a tax based approach the right vehicle to providing meaningful
relief?
Mr. Resendez. Absolutely. We know that there are tremendous
responsibilities that come with caregiving, financial being
chief among them. More than 48 percent of family caregivers
experience at least one negative financial impact because of
their caregiving responsibility. That number goes up for
Sandwich Generation caregivers who are balancing both the
financial responsibilities of having children alongside the
financial possibilities of caring for an adult with a serious
illness or disabilities.
We also know from our research that over half of family
caregivers say they want a tax credit to recognize and support
their caregiving responsibilities. On average, family
caregivers shoulder around $7,000 to $10,000 in out of pocket
cost due to their caregiving roles. Things like home
modifications, transportation, medical expenses, that the tax
code does nothing to recognize. I am married to a teacher, and
when we buy school supplies, we can deduct those from our
taxes.
That is not the case for family caregivers shouldering
caregiving responsibilities. By enabling the tax code to
recognize and provide a credit for family caregiver shouldering
multi-generational care, we say that we see and value those
expenses and want to meaningfully address them through a more
inclusive and caregiver-friendly tax system.
The Chairman. Thank you. Mr. Protas, the Older Americans
Act is the backbone of the community nutrition programs your
network depends on, right?
Mr. Protas. Yes.
The Chairman. We have been working hard to get the OAA
reauthorized, and Raking Member Gillibrand and I are leading
that effort. What is the current state of the Meals on Wheels
network in terms of capacity and demand? What would a strong,
fully reauthorized OAA mean for your ability to serve older
adults and give family caregivers some relief?
Mr. Protas. Thank you for the question, Chairman Scott. I
want to say thank you for your leadership, particularly on the
Senior Act that addresses social isolation and loneliness, such
an important issue. Yes, we have been waiting for the
reauthorization of the Older Americans Act.
As you know, there was a bipartisan, bicameral agreement at
the end of 2024. We would love to see that bill that has broad
consensus be resolved and reauthorized by the end of this
Congress as soon as possible. Seniors are waiting. They are
waiting to be prioritized. I think, and we have heard a lot
here today, that the needs of seniors and their caregivers just
do not receive the attention or the priority consideration that
they need.
For Meals on Wheels programs, they are struggling. As I
mentioned in my written testimony, in my presentation, one in
three Meals on Wheels providers has a waitlist right now.
Sometimes that waitlist is into the years before a senior can
get the help they need. Reauthorization of the Older Americans
Act would send a strong message that these programs are
important.
They need support but that also has to happen in the annual
appropriations process. Currently for Title IIIC programs, the
OAA nutrition program, the current funding is $1.06 billion.
That hasn't changed for the last few years. In fact, it took a
cut for the first time in Fiscal Year 2024. We calculate that
the need is much, much greater than that. With the $1.06
billion, we are feeding about 2.6 million seniors and providing
those moments of care and connection.
GAO estimates that there are another 2.5 million low-income
food insecure seniors who are in need who are not being served.
To put in context why it is such a smart investment to make
sure that we are not leaving seniors behind, our estimate of
the funding necessary to reach all food insecure, low-income
seniors in need is $2.285 billion.
That is less than a quarter of what social isolation costs
Medicare annually. We can make a smart investment upfront and
have tremendous savings downstream, but we just have not made
the investments for the infrastructure, for the supports that
we know work.
The Chairman. Thank you. Ms. Preve, I represent Florida,
and Ranking Member Gillibrand represents New York, two very
different states in a lot of ways, but I suspect when it comes
to Sandwich Generation caregivers, the stories you hear in New
York aren't all that different from the ones Ms. Radka hears in
Central Florida.
What does the caregiving crisis look like in New York, and
what do you think the two states have in common when it comes
to what families actually need? We have better beaches.
Ms. Preve. First, thank you for the question. My colleague
Karla takes all of our volunteers from the State of New York
during the hard winter months. You are absolutely right. It
doesn't matter what state you are in in this country. The issue
of Sandwich Generation caregivers is a story that we hear
everywhere.
What I find really pertinent to the caregiving conversation
is caregiving touches every one of us. Regardless of political
party, regardless of religious beliefs, we are all faced with
caregiving at one point in our lives.
One of the things that we know from data is that if you
support caregivers, you get way more in economic return than
you do if you don't support caregivers. You see that in a
variety of different entities, including people leaving the
workforce. I think what is striking to me--and I still do home
visits.
I have been in this work for 20 years. I love spending time
in living rooms. I hear the same story regardless of who the
caregiver is or who the care receiver is, we just need some
help. By the time a caregiver is ready to ask for help, they
are already at a crisis point because people like Senator Kim
try to do this work on their own for far too long with poor
health outcomes for their loved one because they don't have any
supports.
I also think in the work that I do, it is always really
important to make the economic case on why investments are
important, because I know we are laser focused on budgets. Just
to share with you a couple tidbits. Seventy-two percent of
Sandwich Generation caregivers have reduced or stopped
contributing to their retirement plans. We are going to see a
cascade effect of this as people get older. They are
withdrawing funds from retirement accounts.
Switching from full-time to part-time on average, you are
losing $21,000 of income per year for your earnings. The
lifetime employment losses are over $600,000 in a caregiver's
lifetime. More importantly, you are reducing spending on non-
essential items. Seventy-two percent of Sandwich Generation
caregivers eliminate vacations, don't take additional school
trips, reduce their hobbies.
Forty-five percent of the Sandwich Generation caregivers
report taking on credit card debt. We are going in the opposite
direction with that statistic and 62 percent of people with
minor children delay getting married or having additional
children due to their caregiver issues. We are multiplying the
problem, which comes down to math of the percentage of older
people in the population with younger caregivers.
Again, states like New York and Florida, we are top four as
far as overall population is considered. There truly has not
been enough funding through the Older Americans Act in decades
to support those caregivers and the burden not just falls on
the states, it falls on localities that are filling those
holes, because we have so many people on waiting lists.
I will share with you, the State of New York is fourth in
the Nation for the 60 plus population. We have really robust
funding under Governor Kathy Hochul. We still have 75,000
services that are waitlisted at times for six to twelve to
eighteen months. I think we have made the economic case, but I
think more importantly, we have made the social case that we
should not be treating the population that developed and funded
this country who now have some care needs that we are not
supporting.
The Chairman. Yes, thank you. Ms. Radka, your organization
serves one of the fastest growing regions in the country and
you are on the front lines every single day connecting families
with services. In your experience when a Sandwich Generation
caregiver walks through your door or calls your office, what
are they most desperate for?
Ms. Radka. Our tagline is actually, know us before you need
us, because by the time we receive a caregiver in our front
door, there is already a precipitating factor or a crisis that
is already taking place. At that moment is guidance to be able
to map out where to even start and sometimes that door may not
be just the actual front door.
That might be sometimes a virtual door, a phone call when
the children of older adults are in a different state, and
their parents, their aging parents, are in Central Florida, and
there is a crisis. There is a hospitalization or a major
concern or a fall. What they are looking for initially is just
mapping out that direction of where to start.
Where to start with legal services to determine if they
have access to be able to represent that older adults and make
decisions for them and then in many cases, it is basic services
like food, shelter, and transportation.
In many other cases, the support on navigating the world of
Medicare in terms of understanding how the plans work and how
to be to access the right professionals under those plans, so
it is a multitude of reasons. Each caregiver is provided with
individualized care because each one represent a microcosm that
it may not be similar to that person that walks in the door
next to them.
It is important for us to leverage technology. We have
systems where we keep a record and there is a thread so that
caregiver doesn't have to start telling their story from the
beginning. Any of our counselors can pick up from there and be
able to walk with them that path that is so unique and so
persistent right now in our communities.
The Chairman. Thank you. Senator Kim.
Senator Kim. Yes. Thank you, Chairman. I just have a few
more questions here just based off of what I heard. Ms. Preve,
I wanted to start with you. You know, you were laying out
some--you know, all the different tools that are available and
whatnot.
When we had a chance to be able to talk briefly, you talked
about how, you know, more and more tech tools are arising that
we can, you know, start to think through how that might be able
to help provide some support. I guess I just wanted to ask you
just more broadly, you know, what gaps in resources do you see
most frequently when working with Sandwich Generation
caregivers?
What are your thoughts on how tech might be able to
intersect and, you know, things that we can think about how to
be able to speed up and amplify and scale? I would be
interested in your thoughts.
Ms. Preve. Thank you so much for the question. Tech has
been a game changer in the State of New York and the reality is
we do not have enough funding or services and supports to
provide the level of care that Sandwich Generation caregivers
need, but we do have technology that can assist us in that
practice.
Really when we looked--when New York State Office for the
Aging did the working caregiver survey, they then developed
tools for employers. They also developed tools for employees to
be able to access additional employee assistance benefits.
Things that already exist through employers that they
weren't tapping into. I think specifically to some of our tech
projects, I talked about Trualta through the New York
Caregiving Portal. If you are a caregiver looking for services,
you don't have time to Google what service you are looking for
or what condition you are.
Trualta gives you a standardized plan. If I am caring for
someone with a spinal cord injury, I am going to get
information on mobility and transfers. Where if I am caring for
someone with a cognitive impairment, I might get information
about sundowning. You can get that information in bite-sized
increments, either podcasts, you can read materials, watch
videos.
They have a completely anonymous online support group which
has exploded with users because you don't have to turn your
camera on, and you don't have to say your name. Caregivers that
have this inherent thought process of, I can't talk about this
being hard, are able to do that in a safe environment.
The New York Any Care Counts Campaign, that is a national
movement that utilizes the caregiver intensity index to score
people and then instantly direct them not only to resources,
but also what is helping your care journey and what is hurting
your care journeys. In your situation, it might be beneficial
to you that you have two sons that bring you joy, and good
family supports, but you might be really frustrated with the
health insurance process and trying to get access to benefits
for a loved one. It tells you that in real time so you can then
direct to resources that fix those.
Then if you look at the others that I included in my
testimony, we have deployed over 37,000 of the animatronic
cats, dogs, and walkers, squawkers that reduce social isolation
and loneliness. We have utilized LEQ, which is artificial
intelligence robot that we put in people's homes that are
engaging with older adults and caregivers repeatedly throughout
the day.
A caregiver can then send reminders to their loved one in
real time through the tablet on the LEQ unit, and then there is
a whole host of varieties of online supports for caregivers
where they can learn additional tools like the Get Set Up
platform that is free for any New Yorker, the virtual senior
center free for a New Yorkers.
We also have specialized television programs that we call
the Netflix for dementia, where an individual can actually
watch something pertinent to what was important in their lives,
reduces caregiver burnout and stress because while you are
making dinner, your loved one isn't watching a TV show that
they can't follow. They might--I use the example today of a
retired mechanic who watched a carburetor get rebuilt on the TV
instead of just being stuck in front of Wheel of Fortune.
All these things are not a replacement for the human
connections, but they have changed the game in the State of New
York as far as us reaching an additional two million older New
Yorkers and their families through these low-cost, high-yield
tech interventions.
Senator Kim. Yes, thanks for that. I would love to be able
to followup and be able to learn some more there. Ms. Maher, I
wanted to just go back to you.
You know, one thing that really stuck out again from your
testimony is talking about how, you know, the entirety in which
you have been a mother, you have also had this experience being
a caregiver. You know I hear from many about some of the
tensions that come between that in terms of limited resources,
but also just in terms of the challenges for instance of
childcare and navigating the web with elder care.
I wanted to hear from you just, you know, how that affected
you. You know, if there are any particular concerns that you
had in terms of those tradeoffs that you wanted to share with
us.
Ms. Maher. Yes, absolutely. That was something that was a
big challenge for me, especially when my boys were younger, and
they needed more hands-on care. It is very difficult to have
intermittent care for children or for elder care. On both ends
of the spectrum, there is often minimal hours, a certain number
of visits each week. A certain number of hours required.
I understand that from the care provider standpoint. They
need consistency and reliability, but it is very, very
challenging to secure intermittent care. When I finally did,
when we did find somebody trustworthy, we had her come really
for more hours each week than what we truly needed her for
because there is no infrastructure or system in place to meet
the realities of the intermittent care that is needed.
We did what we could to keep her. We know that we had the
financial resources to be able to do that, and that not every
family has that. Being able to have care, elder care or
childcare, is not just a financial barrier. It becomes like an
administrative and an infrastructural barrier.
Senator Kim. Yes, there is a lot of logistics there. Like,
I know one of the things I didn't quite comprehend was just,
you know, with my father, as I said, he not only has the
Alzheimer's, but is unable to walk.
Just realizing that, like, I do not have a car that can
handle this, and let alone also, you, know, kid seats for my
car, for my children. Like, you just trying to--like just
logistics.
All of a sudden, like I just realized that one day when I
was trying to take him to another medical appointment, like
just those different challenges there. The childcare is
certainly something I am hearing from a lot just of the
challenges of, you know, adding costs as well on top of this
all, especially when caregiving sometimes requires more of our
time, as you were saying.
That then that just increases, again, some of the needs
that we then have for our kids. Just trying to understand that
whole picture is important because sometimes I feel like my
identity as a father to two little boys is in direct tension to
my identity as a son to my father.
It feels almost zero sum in which, you know, that can
happen. In some ways it can be, when I am thinking about
whether or not I can save for my kid's college. You know,
feeling like that is something I can do in the way I wanted to
because of I don't know what is going to happen with my
father's care and where we are going on that front.
Thank you again for just sharing that with us all today.
Chairman, thanks again for your generosity and letting me be
able to raise some of these different points.
The Chairman. Thank you, Senator Kim. Mr. Resendez, I am
proud to be a co-sponsor of the Alleviating Barriers for
Caregivers Act, which would take important steps to expand
support and flexibility for family caregivers.
From your national vantage point, what are the gaps in
federal caregiver support that legislation like the ABC Act is
designed to fill, and what does the research tell us about what
happens to caregivers when those gaps go unaddressed?
Mr. Resendez. Absolutely. Thank you, Chairman Scott, for
your leadership on the ABC Act, a really critical piece of
legislation that will help address a key pain point that family
caregivers face. I think we have heard across the panel, is the
administrative burden that family caregivers face as they
navigate essential benefits that could support them or their
loved ones.
According to our research, over 60 percent of family
caregivers spend their days on top of the care, and for
sandwich caregivers on top of the carer for their children, on
top of work, navigating paperwork and navigating how to access
this benefit. How does this benefit impact my ability to access
that benefit? It is a maze that caregivers spend hours on hours
a day trying to navigate.
The ABC Act would provide an assessment of how to reduce
that administrative barrier from a family caregiver specific
perspective to increase access to Medicare and Medicaid and
SSA, Social Security Administration, benefits.
Really bedrock programs that family caregivers and the
people that they are caring for rely on to make care work, to
make home and community-based living possible, so by targeting
that administrative burden, we go a long way in recognizing and
honoring the time that it takes to care on a daily basis.
The Chairman. Thank you. Mr. Protas, the Senior Act
includes provisions focused on multi-generational family
support. From your perspective, operating across thousands of
communities, how important is that federal aging policy
connects the dots between nutrition independence in the
families and caregivers surrounding older adults?
Mr. Protas. Thank you again for your leadership on the
Senior Act. We know from years of evidence how important social
connections are for helping seniors to live independently,
keeping them out of emergency rooms, out of hospitalizations,
and out of nursing homes.
That support also has significant health benefits too.
Being able to bolster the ability to make those connections for
seniors, not only helps the senior, but it provides that peace
of mind for caregivers who can't always be there. It gives
caregivers that ability to not face the tensions so acutely
between putting in work hours and being there for their loved
ones. Knowing that that kind of connection and care is there is
a huge support for caregivers.
The Chairman. Ms. Preve, just briefly, how much does a
robot cost, and how do you get funded?
Ms. Preve. Again, we are really lucky. Our state unit on
Aging, Director Olsen, really loves technology. This has been
something--when we were thrown, you know, headfirst in the
COVID-19 pandemic in the State of New York, we were hit hard
and fast. We had to adjust our service model to get to people.
We know that social isolation and loneliness is equivalent
to smoking up to a pack of cigarettes a day. This for us was
really prevention agenda. The LEQ robots are actually not that
expensive. It is around $900 for the robot, but they will work
with states that are interested, and then there is a monthly
subscription fee. I have to tell you, LEQ looks like the Pixar
lamp. When you get up in the morning, she wakes up, she will
follow you.
I am going to use myself as an example. She will say, good
morning, how did you sleep last night, Becky? If I say four
days in a row, I slept terribly, and on day five I say, LEQ, I
sleep really well, she will then prompt me and say, what did
you do different last night and why did you sleep better? The
AI actually learns with you as you go. She will learn who your
relatives are.
If you text a photo to the LEQ unit, LEQ will announce it
to the individual. It is the first proactive AI that we have
seen with older people. Unlike Alexa where you have to prompt
her, LEQ prompts you automatically. What we have found is that
not only are people engaging in health and exercise activities
because LEQ prompt them. They are drinking more water.
They are taking their medications on time. Their social
isolation and loneliness has been reduced by 98 percent in the
pilot that we have done over the course of the past three
years. The most popular feature that LEQ has built in is you
can play bingo against other LEQ users in the community.
Organically, our users have become friends. Some might live
in Manhattan, and some might live Clinton County, New York, and
they have forged these relationships. If you can change
someone's life and reduce their risk of dying from social
isolation and loneliness for such a low price, for us, that was
just a win-win that we embraced wholeheartedly.
The Chairman. You talked earlier about, you know, I think
return on investment. Have you been able to show your
Legislature that you can get a return in investment?
Ms. Preve. Absolutely.
The Chairman. Yes, what is their--how do they think about
it? Do they give you more money? Has it worked?
Ms. Preve. Last year, we actually have the largest
investment for unmet needs in the history of the State of New
York. Obviously, we are still waiting for the budget in the
State Of New York as we speak.
What is really important, and I have said this to the
Legislature before, we tell stories all the time about
individuals, people with disabilities, we share stories, but it
never seems to move the mark. You have to talk about the
economics, and you have to talk about the return on investment.
Every one of our 34 public-private partnerships has been
measured or is being measured because we are continuing to
deploy them.
When we can show a really strong return on investment, it
absolutely gets the attention of elected officials to say this
is going to save our state money, but it is also the right
thing to do for people. Again, I am more than willing to
provide follow-up on our data and metrics.
We have--just with our animatronic pet project, I think
there has been over 18 studies published on the efficacy, as in
LEQ has been in the New York Times and a variety of other
highlighted features. Every one of them has shown a return.
I think for me personally, looking at a pilot that we did
in the Rochester area in the State of New York in partnership
with Lifespan of Greater Rochester to embed our case management
staff in primary care physician's offices showed almost a four
to one return on investment ratio.
The Chairman. Were they able to reduce spending in a
different area because of that?
Ms. Preve. The Legislature or the individual primary----
The Chairman. No, the Legislature.
Ms. Preve. They--part of our unmet need funds were----
The Chairman. Was it Medicaid spending they saved money on
or--how--?
Ms. Preve. It was Medicaid savings that we booked our
savings against. We serve throughout the AAA network non-
Medicaid eligible individuals that are just above the income
benchmark, but we know if we can't get the services to them,
ten percent spend down to Medicaid immediately to go to a
skilled nursing facility, and an additional seven percent spend
down to MLTC in the community, which is a much larger cost than
the AAA services that we are able to provide. The problem is we
have historically never had enough funding through the OAA to
support the service infrastructure, because unlike Medicaid, we
can't guarantee the service.
The Chairman. If you have data that can show on the federal
level, because I have no impact on New York's budget, and I am
not the Governor of Florida anymore so I can't impact their
budget. If you any on the federal budget, I can talk to--
because it all comes through CMS. I can talk to Mehmet Oz and
get him to reach out. Because if you can do that, it is better
for the patient, and it saves the Federal Government money, so
it seems like they ought to invest more money.
Ms. Preve. I will send you a copious amount of information
about cost savings by investing in our service infrastructure.
The Chairman. Yes, and I will be glad to--I have got--I
talk to him quite a bit and I see him in a couple weeks. If you
give me the data, I will get it to him and try to get him to
reach out to you. Ranking Member, you are up.
Senator Gillibrand. Thank you. Thank you guys. This
testimony has been excellent. I want to talk a little bit with
all of you on the notion of unpaid and paid leave. Today we
have a requirement that you can take unpaid leave by law if
your company has over, I think, five employees.
What we have been trying to do is provide paid leave, and I
want to talk about that separately. The fact that our
caregivers just aren't earning money. Much of this care is
uncompensated, and they are giving a trillion dollars of
uncompensated care every year. I want to talk about that
separately. I would like to hear from each of you, and Jason,
you could start.
One in every four adults in the United States is a
caregiver, and as this Sandwich Generation grows, the question
of who bears the cost of caregiving has never been more urgent.
At the same time, the people receiving the care, the children,
the aging parents, the ill family members, are left dependent
on whatever a worker can cobble together.
That is why I am leading a bill to create a national paid
leave program, so that you could take up to three months off to
meet the needs of a loved one, or your own for illness, but to
meet needs of the loved one and continue to be paid a portion
of your salary so that are not unpaid during that time.
Also so that don't lose your spot in your job, but also so
you can, you know, stay in your apartment, stay in your home,
not be unable to pay your bills. Mr. Resendez, knowing that
caregiving is almost an unavoidable reality for most Americans,
how should policymakers approach family and caregiving as a
foundational investment for both the labor force and for the
health and well-being of the people they care for? What other
workplace flexibility should employers consider as more and
more Americans are faced with new or compounding caretaking
responsibilities?
Mr. Resendez. Absolutely. Thank you, Ranking Member
Gillibrand, for your leadership on the Family Act and paid
family and medical leave. More broadly, we hope that it
inspires other members of the Senate and Congress to understand
that caregiving isn't a niche issue.
It is an issue that touches more than 63 million Americans,
and 70 percent of those family caregivers that are working age,
age 18 to 64, balance those caregiving responsibilities while
also balancing career responsibilities. Policymakers should
treat paid family and caregiving leave as core economic
infrastructure, not a fringe benefit.
Without it, we know that over nearly 50 percent of family
caregivers experience negative financial impacts like stopping
savings, taking on debt, taking high interest credit cards, or
leaving the workforce entirely.
A national paid leave standard that explicitly covers
caregiving for aging parents, sick spouses, adult children with
disabilities, would help stabilize the workforce, protect
retirement security, and reduce the cascading healthcare costs
that come when family caregivers delay their own care.
It is also a smart economic investment. Family caregivers
already contribute 49 billion hours of care valued at one
trillion a year. Protecting their ability to stay in the
workforce while caregiving is far less costly than absorbing
the downstream impacts and burnout, and also lost tax revenue
that happens when families have to leave the workforce, a
particular issue that female caregivers face over their
lifetime at an estimated cost of around $300,000 in lost
earnings.
Senator Gillibrand. Ms. Preve, will you give me your
opinion about having a national paid leave program?
Ms. Preve. It is a brilliant idea and again, when you look
at what caregivers are faced with, I think there is a couple
reasons we need to be laser focused on it. Not only because it
is the right thing to do, because obviously we know that, but
we know caregivers are already paying, you know, up to $10,000
more out of pocket in their grocery carts each year but we also
know a lot of people are leaving the workforce.
I hear this all over the State of New York of having to
make the choice between staying and working or leaving and
staying home. You know, if you look since COVID, we have lost
almost 4.6 million people in the workforce due to caregiving--
$44 billion in economic loss of wages. When you look at that,
you know it makes the economic standpoint, but I think you also
need to look at it in the larger lens of we are losing skilled
nursing facility beds across the country.
We lost 750 nationally, but in the State of New York, we
lost 14 and reduced our beds. You don't even have a choice
anymore to stay working and have a place for a loved one to go
because those facilities are closing at an alarming rate.
Currently, if you look at, you know, what is happening with
reimbursement rates, 44 percent of skilled nursing facilities
have indicated that they are operating in the negative margins
and 300 additional ones are looking at closure.
It would be one thing if we had this robust infrastructure
for people that had to remain in the workforce, but we simply
don't. Allowing those workers to be paid while they can take
that time off is going to increase the overall health and
wellness of the older population and people with disabilities,
but it is also going to delay emergency department utilization
and skilled nursing facility utilization, which is driving our
healthcare costs through the roof.
For us, it is a win-win because it is another relatively
low cost, very high yield intervention that is going to support
those Sandwich Generation caregivers.
Senator Gillibrand. Thank you. Ms. Radka, do you have any
opinions?
Ms. Radka. Definitely, I do. I think that it is so
important to be able to support caregivers with a paid leave.
Not only does it contribute to the mental health well-being of
the caregiver, knowing that an employer had offered this type
of benefits, especially when there is an early diagnosis or
when there is a crisis happening at home with their loved one.
I think it also contributes to the good environment and the
culture of the workplace and loyalty from employees. That
ability to be able to have the security of a job, a place that
they can go back to continue to earn a living while they
navigate this complex world of caregivers for aging parents and
older Americans.
Senator Gillibrand. Ms. Maher or Mr. Protas, do you want to
add anything to what paid leave could have made--certainly in
your position, Ms. Maher, that might have made a difference in
the challenges that you faced at that time.
Ms. Maher. Thank you. Yes, caregiving has really shaped
nearly every professional decision that I have made. I left
oncology clinical research when my oldest son was just under a
year old. When I returned to work, I had this sense that a
traditional job with fixed hours was not going to allow me to
meet the needs of my family. I am now self-employed, which
gives me flexibility to show up for my family, but it comes
with real economic tradeoffs----
Senator Gillibrand. Economic costs----
Ms. Maher. Absolutely, huge economic tradeoffs. Like it
would be immediate and long-term, so.
Senator Gillibrand. Yes, and you have to pay for all your
insurance as a self-employed person.
Ms. Maher. Yes.
Senator Gillibrand. Which is very expensive.
Ms. Maher. Yes.
Senator Gillibrand. Much more expensive.
Ms. Maher. Yes.
Senator Gillibrand. Mr. Protas, do you have any thoughts?
Mr. Protas. I have so many thoughts, but I will keep them--
--
Senator Gillibrand. Whatever you want to share.
Mr. Protas [continuing]. keep them on topic. Absolutely,
paid leave would help caregivers. It would help relieve
burnout. It will relieve the stresses that they feel. I want to
maybe give a different perspective. By more robustly funding
Older Americans Act program services, we can relieve the need
for caregivers to take time off as much as they currently do,
whether that is paid or unpaid.
We have systems in place that can provide some very helpful
complementary support to older adults in need. Chairman Scott,
you talked before about, you know, the important return on
investment for some of these technologies. That exists also for
Older Americans Act program services.
If we make the smart upfront investments to make sure that
families and their caregivers are getting support through
programs that already exist, we can relieve the need for----
Senator Gillibrand. For that emergency care, yes. I have
another idea for you. One of the bills that I work on with
Senator Murphy and others is to make sure that when you are in
one of these caregiver modes, that you are getting credit for
your Social Security. That they are putting placeholder--it is
as if you were remunerated, what your pay would have been, and
that then gets put into your Social Security.
I would like your opinion on that bill, but I also want to
go one step further. Imagine, as a caregiver, if you get paid
by Social Security to do the care, as opposed to just your
Social Security money going to an assisted living facility or
going to a--like that you could actually be paid for the care.
I would like your thoughts and comments on both of those ideas.
Ms. Preve.
Ms. Preve. I think they are fantastic. I think one of the
things that we are really trying to push is that if there is a
gap in someone's employment because they were a caregiver, they
are probably the best employee that you are ever going to get
because literally these caregivers are schedulers, they are
social workers, they are medical professionals. The skill set
is just immense.
Not having that gap and actually the financial security of
paying into Social Security number one is huge, but number two,
being able to give an economic benefit to a caregiver that
wants to do this work and who is available to do this work, is
again--it is a return on investment for those individuals not
ever having to go to another higher level of care. You know, to
some of the comments today, having direct care workers is a
national problem.
It has been a problem since 1987 when it was on the front
page of the New York Times. There are not enough direct care
workers to fill the needs in homes and communities. Allowing
organic caregivers to get paid for the work that they were
doing would solve that solution. Again, keep people in homes
and communities, which is way cheaper for our system than
forcing someone into institutional care.
Senator Gillibrand. Mr. Protas--why don't we just go down.
Mr. Protas. I think that would support caregivers
immediately, in terms of being paid through Social Security,
but it would also have benefits for the future for savings for
retirement.
The demographic change, the shift that we have had in this
country with a rapidly growing senior population and fewer
younger adults who will be able to contribute and care for
them, is something we haven't reckoned with. It seems like it
makes sense and is a good idea to start working toward filling
that gap.
Senator Gillibrand. Mr. Resendez
Mr. Resendez. Absolutely. Thank you for your leadership on
these issues and ideas. Social Security credit would go a long
way in helping to replace and stabilize the financial
insecurity that family caregivers experience when they are
forced to leave the workforce.
That was my mom's experience and millions of other
caregivers like her, and we know that they rack up over
$300,000 in lost earnings over a lifetime because of that
shift. Being able to ensure that that care, which is work,
right--this is a highly complex care, care that is valued at $1
trillion, certainly saves the Medicare and Medicaid program
billions of dollars, trillions of dollars annually.
A credit would recognize that as work and ensure that
family caregivers don't risk their financial instability to
provide it. In terms of direct care or direct payments, this is
something that we know family caregivers want, particularly
lower income family caregivers and programs that can provide
direct financial compensation to family caregivers, not as a
handout, but for the services that they provide----
Senator Gillibrand. Correct.
Mr. Resendez [continuing]. are things that family
caregivers want and need. We are talking about providing
complex care, wound care, changing feeding tubes, and doing
this in the backdrop of a direct care workforce shortage. By
2034, PHI estimates that we will need to find 10 million direct
care workforce jobs if we are going to meet the demand for care
in this country. That is likely not going to happen.
We need to think creatively about how we fill that gap.
Bringing family caregivers into that process through programs
like either SSA payments or consumer direction, which already
exists in every state across the country, or the structured
family caregiver support program enables us to value the
contributions of family caregivers while also addressing the
workforce shortage that we are experiencing.
Senator Gillibrand. Yes. It is also so much cheaper,
because we know that for an older adult, care at home has
better outcomes. Being able to age in place, being able to have
your care being met. Institutional care is multitudes more
expensive. It is the cheapest, most efficient, most effective
care.
Then with the AI examples you were talking about, and you
have the ability to have AI counterparts and telehealth
counterparts, that caregiver can meet the need that would cost
three times as much if you put somebody in a nursing home or an
institutional care with much worse outcomes.
It is good for everybody, and it saves us much more money
in health care costs down the line--and saves Medicare dollars
and Medicaid dollars.
Mr. Resendez. Absolutely.
Senator Gillibrand. Ms. Maher.
Ms. Maher. Thank you for looking at this bill, and I think
it will really bring some ease and help to eliminate the long-
term economic tradeoffs that come from so many sandwich
caregivers needing to leave the workforce. Receiving Social
Security credit for the caregiving that is provided helps set
up sandwich caregivers for more financial stability in the
future.
Senator Gillibrand. Ms. Radka.
Ms. Radka. I am so glad that you asked this question,
because the Veterans Administration already through a program
that is called Veterans Direct Care, and one that is
implemented at my AAA, provide a service to veterans where they
are on the driver's seat to select their caregiver, and a
caregiver that gets paid.
It could be a trusted neighbor who has background in
medicine. It could be a relative. It could be a professional
from the community. What is important is that these veterans
continue to age in place, like you mentioned. It is a reduced
cost, the preventing institutionalization. It prevents hospital
readmission and definitely provide a quality of care.
Senator Gillibrand. It also affects their mental wellness.
Mental health is a huge challenge. Again, all the evidence we
have seen, when a senior can stay in his or her community with
the people she knows and loves, she is going to thrive. She is
going to do better, better outcomes. Will live longer. Will be
healthier.
Ms. Radka. Definitely. I think there is something that is
very important, and you also touched on that, is the leverage
of technology and AI.
Like in our community, we have implemented a system to
detect fall prevention. It is very discreet. It is radar based,
but also it is monitored 24/7, and that allows that caregiver
the peace of mind that if they are far away, or even a few
houses or a few doors down, they can be notified immediately if
there is a fall and we know how detrimental falls can be in our
seniors.
Implementation of systems like this radar based technology
to detect falls, or implementation of programs like the
hospital readmission, prevention hospital, hospitalization that
we have in our area where we put services to really give a
peace of mind and support the caregiver with care in the home
for the senior, it creates a better safety net to be able to
provide care for our caregivers and our older Americans.
Senator Gillibrand. Thank you, everybody.
The Chairman. All right. I would like to thank everyone for
being here today and participating. I Look forward to
continuing to work with all of our members here on the
Committee.
If any Senators have additional questions for the witnesses
or statements to be added, the hearing record will be open
until next Wednesday at 5:00 p.m. I want to thank you for being
here. If everybody will come up, we'll get a picture.
[Whereupon, at 5:09 p.m., the hearing was adjourned.]
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APPENDIX
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Prepared Witness Statements
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[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
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Questions for the Record
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U.S. Senate Special Committee on Aging
"Caught in the Middle: Supporting Families in the Sandwich Generation"
May 13, 2026
Questions for the Record
Karla Radka
Ranking Member Kirsten E. Gillibrand
Question:
Can you speak to the broad range of caregiving
relationships amongst the caregivers you work with and why a
more [generous/expansive] understanding of family caregivers is
critical for this growing wave of Americans entering the
sandwich generation?
Response:
Caregiving today extends far beyond traditional definitions
and must be understood through a broader, more inclusive lens.
Through our work at the Senior Resource Alliance, we
support caregivers across a wide and evolving spectrum of
relationships. Caregivers are not only adult children caring
for aging parents, but they also include spouses, siblings,
grandparents raising grandchildren, and even neighbors or close
friends who step into caregiving roles out of necessity. Many
of these caregivers are unpaid and operate outside formally
recognized systems of care, yet they provide essential support
that enables individuals to remain in their homes and
communities with dignity.
Within the sandwich generation, caregivers are balancing
multiple responsibilities simultaneously raising children while
supporting aging parents, often while maintaining full-time
employment. Increasingly, this also includes multi-generational
caregiving arrangements that reflect the complexity of modern
families.
An expansive understanding of "family caregiver" is
critical to ensure that policies reflect lived realities,
promote equitable access to services, and strengthen program
effectiveness. When definitions are too narrow, many
individuals providing substantial care are excluded from
support and resources designed to assist them.
Policy Recommendations:
To better align federal policy with the realities of
caregiving today, Congress should:
Modernize the federal definition of "family caregiver"
to explicitly include non-biological and non-legal caregiving
relationships.
Expand and strengthen the National Family Caregiver
Support Program to ensure it serves caregivers across
relationship types and circumstances.
Promote culturally responsive caregiving approaches that
recognize extended family and community-based caregiving
structures.
Enhance outreach and navigation support through the
aging network to ensure all caregivers can access services
early and effectively.
What impact does the persisting direct care workforce
shortage have on family caregivers, particularly those in the
sandwich generation?
Response:
The persistent shortage of direct care workers has a
profound and compounding impact on family caregivers,
particularly those in the sandwich generation. In many cases
relying and leveraging assisted technology, like 24/7 fall
detection that is installed in the home of seniors and engaging
caregivers in the process and monitoring.
Direct care workers including home health aides and
personal care aides are essential to enabling older adults and
individuals with disabilities to remain safe in their homes.
However, workforce shortages continue to limit access to these
services, shifting increasing responsibility to family
caregivers.As a result, family caregivers are often required to
fill critical gaps in care delivery, taking on complex and time
intensive responsibilities without formal training or adequate
support. Many are forced to reduce their work hours, take
unpaid leave, or exit the workforce entirely affecting both
their immediate financial stability and long term retirement
security.
The strain is especially acute for sandwich generation
caregivers, who are already balancing caregiving
responsibilities across two generations while managing
employment and family obligations. Inadequate access to direct
care also contributes to delays in services, increased stress,
and a higher risk of caregiver burnout.
Addressing the direct care workforce shortage is therefore
essential not only to strengthen the long term care system, but
also to stabilize and support family caregivers.
Policy Recommendations:
To address the workforce crisis and reduce strain on
families, Congress should:
Increase federal investment in the direct care
workforce, including support for competitive wages, benefits,
and retention strategies.
Expand workforce development initiatives focused on
training, credentialing, and career pathways for direct care
workers.
Strengthen funding for home and community based services
(HCBS) to improve access to care and reduce reliance on unpaid
caregivers.
Advance financial support for family caregivers, such as
tax credits, to offset the economic burden when formal care is
unavailable and seeking effective models such the Veterans
Direct Care from the Veterans Administration.
Promote integrated care models that better connect
family caregivers and direct care workers to improve
coordination and support.
U.S. Senate Special Committee on Aging
"Caught in the Middle: Supporting Families in the Sandwich Generation"
May 13, 2026
Questions for the Record
Megan Maher
Ranking Member Kirsten E. Gillibrand
Question:
Please share with us how caring for your parents has
affected your employment status and work-related decisions.
Response:
Caregiving has shaped nearly every major professional
decision I've made.
I left oncology clinical research when my oldest son was
under a year old, during the same period my mother had been
diagnosed with stage IV breast cancer. When I later returned to
work, it became clear that traditional employment structures
were difficult to reconcile with the realities of caregiving.
The unpredictability of caregiving - medical appointments,
care coordination, responding to urgent situations with little
warning - in addition to mothering two children, does not fit
neatly into fixed schedules or limited leave policies. Much of
caregiving happens in the spaces between planned events, and
those demands are often invisible until they become
unavoidable.
Over time, I found myself making professional decisions not
primarily around advancement, but around flexibility and the
ability to remain responsive to my family's needs.
I eventually became self-employed as an end-of-life doula,
and that flexibility has allowed me to remain responsive as my
family's caregiving needs have evolved. In many ways, the work
I built professionally grew directly out of the caregiving
realities I was living personally.
At the same time, self-employment has come with significant
tradeoffs. It has meant constrained income growth, reduced
retirement contributions, no employer-sponsored benefits, and
long-term financial consequences that accumulate gradually over
time.
I believe this is true for many caregivers. People quietly
reshape their employment, career trajectories, and financial
futures around what their families need. Much of that impact
remains largely invisible from the outside and insufficiently
recognized in policy conversations about work, caregiving, and
economic security.
Question:
What kinds of caregiver and workplace offerings might have
benefited your situation by providing you with additional
options and peace of mind?
Response:
Two things would have made the greatest difference:
flexible workplace policies and stronger caregiving
infrastructure outside the workplace. I think they have to work
together - one without the other is not enough.
On the workplace side, the most valuable offering would
have been flexibility that was both meaningful for employees
and workable for employers: flexibility around scheduling, some
discretion for managers to accommodate unavoidable caregiving
demands, and leave policies that recognize caregiving for aging
parents as a legitimate and recurring need, not a rare
exception. Caregiving is unpredictable. A workplace structure
that acknowledges that reality, rather than requiring
caregivers to manage it invisibly, would have changed the
calculus significantly.
But workplace flexibility alone does not solve the problem
if the support systems outside work are not there. What would
have given me the most peace of mind was knowing there was
reliable, accessible support available when caregiving needs
changed unexpectedly - support that did not require navigating
complicated systems or planning weeks in advance. An employee
assistance program with real caregiving navigation support
would have been enormously valuable: someone who could help
identify what resources existed locally, through federal
programs, and within the healthcare system.
For years, I did not know what I did not know. A single
knowledgeable person pointing the way would have changed that.
For sandwich caregivers specifically, employer-sponsored
backup childcare - the kind many large employers now offer for
new parents - would have been transformative during the years
when my sons were young and my caregiving responsibilities were
most acute. Finding trusted, last-minute childcare for a single
appointment was one of the hardest logistical challenges of
those years. I also believe backup elder care support would
make an enormous difference for many caregivers trying to
balance work responsibilities with the unpredictable realities
of caring for aging parents or relatives.
Question:
What policy reforms should Congress prioritize to better
support family caregivers' financial security and workforce
participation?
Response:
Three areas deserve urgent attention.
First, Congress should prioritize simplifying access to
federal programs. The Alleviating Barriers for Caregivers Act
addresses something I have witnessed firsthand, not in my own
caregiving, but in my work supporting families. Navigating
Medicaid is, for many families, meticulous and exhausting. The
paperwork is rigorous, extraordinarily time-consuming, and
requires a meticulous attention to detail that is difficult to
maintain while actively caregiving. The process is opaque, and
even finding the correct pathway can be difficult. Families
apply, get denied, appeal, and start over. Many end up needing
to hire a professional to help them through the process, which
creates another cost families may not be able to absorb.
The Home and Community-Based Services (HCBS) Medicaid
waiver program deserves particular attention. It is the pathway
that can allow someone to receive home-based services and
remain in the place they call home rather than entering a
nursing facility. In practice, the waitlists can be
extraordinarily long, and the eligibility rules, documentation
requirements, and application processes are often burdensome
for families already under significant strain.
What I find difficult to reconcile is this: it is often
easier, procedurally, to place someone in a nursing facility
than it is to support them remaining at home. For families who
want to keep a loved one at home - which is what many people
want, and what research has shown leads to better outcomes\1\ -
the burden can be significantly higher. Families are often
required not only to go through the already rigorous Medicaid
application process, but then also endure additional layers of
assessments, documentation, and eligibility determinations
specific for HCBS. Even after completing that process, many
encounter extraordinarily long waitlists, inconsistent
availability, or the reality that services may never become
available at all. This imbalance in access and support deserves
to be addressed directly.
---------------------------------------------------------------------------
\1\ Rachel M. Werner et al., "Patient Outcomes After Hospital
Discharge to Home Health Care vs Skilled Nursing Facility," JAMA
Internal Medicine 179, no. 5 (2019): 617-623, doi.org; National
Institutes of Health, "Effectiveness and Cost-Effectiveness of Home-
Based Support for Older Adults," PubMed Central, last modified 2017,
nih.gov; "Long-Term Care Survival Rates Among Matched Beneficiaries,"
The Gerontologist 58, no. 4 (2018): 685-694.
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Second, Congress should prioritize meaningful financial
recognition of caregiving's economic cost. The
Multigenerational Home Caregiver Credit Act is an important
step. Caregiving carries real and often invisible financial
costs: increased household expenses, constrained professional
capacity, deferred income, reduced savings, and long-term
financial tradeoffs. A tax credit that acknowledges those costs
formally would be both practically helpful and symbolically
important.
Third, paid family leave must include caring for aging
relatives. Senator Gillibrand raised this during the hearing,
and I want to support it clearly for the record. The caregiving
workforce is not only new parents. Sandwich generation
caregivers are navigating the needs of aging parents at the
same time they are raising children and maintaining careers.
Paid leave that covers elder caregiving - not only parental
leave - would be a significant and meaningful support for
millions of Americans doing this work.
Question:
Given that one in five families is now spending more than
$30,000 a year on childcare, can you speak to how these
prohibitive costs specifically impact your ability to save for
your own future while also managing the medical needs of your
aging father?
Response:
The financial reality of sandwich caregiving is a squeeze
from both directions. For many of us, that squeeze does not
announce itself all at once. It accumulates quietly, over
years.
When my sons were young and my caregiving responsibilities
were most acute, childcare costs were significant. Those were
the same years I was navigating my mother's illness, supporting
my father through a medical crisis, and eventually building a
self-employed practice around the realities of caregiving in my
family. The costs were simultaneous and compounding - not only
in dollars spent, but in professional capacity, income growth,
and long-term financial trajectory.
I want to speak clearly about what self-employment means
for long-term financial security, because I think it is
underrecognized in this conversation. I made a deliberate
choice to be self-employed because traditional employment was
not well suited to the unpredictability of my caregiving
responsibilities. That choice gave me flexibility. It also
meant no employer-sponsored retirement plan, no employer match,
no employer-sponsored benefits, and an income I intentionally
constrained to make space for my family.
Those are not temporary costs. They are permanent ones that
compound over time and show up in retirement security.
This is true for many sandwich caregivers. The financial
impact is not only what we spend. It is what we do not save, do
not invest, and do not accumulate because caregiving reshapes
the architecture of our professional and financial lives in
ways that are largely invisible from the outside and largely
unrecognized by policy.
The combined direct out-of-pocket costs and the ongoing
responsibilities, time demands, and employment disruptions
associated with caring for children and aging family members
create long-term consequences for caregivers' financial
futures. That is something this Committee should take
seriously.
U.S. Senate Special Committee on Aging
"Caught in the Middle: Supporting Families in the Sandwich Generation"
May 13, 2026
Questions for the Record
Jason Resendez
Ranking Member Kirsten E. Gillibrand
Question:
In what ways do home- and community-based services provide
a lifeline for sandwich generation caregivers?
Response:
Home- and community-based services are often the difference
between a sandwich generation caregiver being able to stay in
the workforce and being forced to drop out or institutionalize
a loved one. The 2025 Caregiving in the U.S. report finds that
29 percent of caregivers fall into the sandwich generation
category, simultaneously providing care for children and
adults, and among caregivers under age 50, that number rises to
47 percent(1) -a population already juggling paid work,
childrearing, and high-intensity care. HCBS-personal care,
adult day programs, home health, respite, and supported
employment-directly absorbs hours of care that would otherwise
fall to these families, allowing them to remain employed,
sustain their own health, and parent their children. Over five
million people receive Medicaid-covered home care services
annually(2), and for the family members of those recipients,
HCBS is functionally the public infrastructure that makes their
dual caregiving role survivable.
Question:
How might recent Medicaid cuts put home- and community-
based services at risk, and what impact would this have on
sandwich generation caregivers who would experience a loss of
crucial support?
Response:
The 2025 reconciliation law is estimated to reduce federal
Medicaid spending by approximately $911 billion between 2025
and 2034-roughly a 14 percent reduction in federal funding for
the program(3)-and HCBS is uniquely exposed because, unlike
nursing facility care, it is an optional Medicaid benefit.
During the last major reduction in federal Medicaid spending,
all states reduced spending on home care: 40 states served
fewer people and 47 states cut benefits or payment rates for
long-term care providers(3). The likely consequences for
sandwich caregivers are longer waiting lists, fewer authorized
service hours, lower provider rates that worsen workforce
shortages, and tighter eligibility-forcing more unpaid hours
onto family members already reporting record financial strain
and burnout(1). In practical terms, every hour of HCBS the
system cuts is an hour transferred to a daughter, son, or
spouse who is also raising kids and holding a job.
Question:
Given the preference for and cost savings in providing
supports and services through HCBS over institutional settings,
could you please speak to the importance of rebalancing our
systems to address this reality?
Response:
Rebalancing is both what people want and what costs less.
McGarry and Grabowski found that a one percent increase in HCBS
spending was associated with state nursing home populations
falling by an average of 47 residents and institutional
Medicaid LTSS spending dropping by $7.3 million, with no
evidence of a "woodwork" effect on Medicaid enrollment(4). In
2023, average annual Medicaid LTSS expenditures were $17,298
per person for individuals receiving HCBS, compared with
$54,462 for individuals in institutional settings, and the
national evaluation of Money Follows the Person found that
average per-person Medicaid health and LTSS costs were 23-30
percent lower following transitions back to the community(5).
Yet structural bias persists: nursing facilities are a
mandatory Medicaid benefit while HCBS is optional(5), forcing
many older adults and people with disabilities into more costly
institutional settings even when their needs and preferences
could be met at home. Eliminating that bias-by making a core
HCBS benefit mandatory, sustaining Money Follows the Person,
and tying enhanced federal match to rebalancing progress-would
align spending with both consumer preference and fiscal
reality.
Question:
Knowing that caregiving is almost an unavoidable reality
for many Americans, how should policymakers approach family and
caregiving leave as a foundational investment for both the
labor force and for the health and wellbeing of the people they
care for?
Response:
Policymakers should treat paid leave the way they treat
roads or public schools: as core infrastructure that enables
the rest of the economy to function. More than 63 million
Americans-nearly one in four adults-provided care for an adult
or child with a complex medical condition or disability and
more than 60% provide that care while working. A national, job-
protected paid leave program-covering serious illness, end-of-
life care, and care for a parent, child, spouse, or chosen
family member-keeps workers attached to jobs, preserves wage
and retirement growth (which disproportionately protects women
and caregivers of color), and improves outcomes for the person
being cared for. Without it, the United States will continue to
absorb the cost as lost productivity, premature workforce
exits, and higher downstream Medicaid spending when unpaid
caregiver health collapses.
Question:
What other workplace flexibilities should employers
consider as more and more Americans are faced with new or
compounding caretaking responsibilities?
Response:
Beyond paid leave, employers should normalize flexible and
predictable scheduling, remote and hybrid options where
feasible, part-time-with-benefits pathways, and intermittent
leave that tracks the episodic nature of real caregiving (a
hospital discharge, a fall, a new diagnosis). Concrete benefits
matter: subsidized backup care for elders and children,
employer-paid respite, navigator and care coordination
services, eldercare FSA-style accounts, and caregiver employee
resource groups to reduce isolation. Over 40 percent of
caregivers now provide high-intensity care, and many perform
complex medical tasks while only 22 percent receive training1-
designs that only accommodate a short, one-time leave miss the
actual shape of long-term caregiving. The business case is
straightforward: retention of experienced workers, lower
turnover costs, and reduced presenteeism among the roughly one
in four employees who are caregivers right now.
Question:
How do you respond to the argument that caregiving should
be a purely uncompensated family responsibility, and why is
direct financial support a necessary investment?
Response:
Family caregiving is essential, skilled work, and it
deserves to be treated that way. Caregivers provide an
estimated $1.1 trillion worth of care each year-care the public
system would otherwise have to buy at market rates-and the work
is more demanding than ever. Today's caregivers handle complex
medical tasks that once required a hospital and trained
professionals: managing medications and IV lines, operating
monitoring equipment, dressing wounds, and coordinating across
multiple specialists, often around the clock and while holding
down jobs of their own.(1) Work this skilled and this vital
calls for real support, not gratitude alone. Formal supports
and services-refundable caregiver tax credits, Social Security
caregiver credits, Medicaid self-direction programs, paid
leave, training, and respite care-recognize caregiving for what
it is: a demanding job that sustains both the health system and
the people who depend on it, while preventing the larger costs
that follow when caregivers are pushed into poverty, forced to
retire early, or worn down until their own health gives way.
Question:
Can you discuss how building a stronger long-term care
system would reduce the burden on family caregivers and help
support the broader economy?
Response:
A robust long-term care system functions as workforce
infrastructure. When HCBS, adult day, home health, and trained
direct care workers are available and affordable, family
caregivers can stay in paid jobs, contribute to GDP and tax
revenue, and continue saving for their own retirement; when
those supports are absent, employers absorb the losses through
turnover and reduced hours, and Medicaid eventually absorbs
them through avoidable institutionalization in emergency room
visits and nursing homes. The number of family caregivers has
jumped to 63 million Americans-a 45 percent increase, or nearly
20 million more caregivers, over the past decade.(1) That
growth is picking up speed as the population ages. Building the
system now costs far less than the alternative: leaving
families to carry the burden and paying for more expensive
nursing-home care later.
Question:
Beyond direct caregiver support, what gaps exist in the
long-term services and supports infrastructure itself, such as
workforce shortages in home health and adult day programs, that
can force families into caregiving roles with inadequate
support?
Response:
Even with generous caregiver benefits, families hit a wall
when there are no workers or programs to pay for. The direct
care workforce numbers 5.4 million workers, including nearly
3.2 million home care workers.(6) The field can't hold onto
people: median annual turnover for nursing assistants in
nursing homes was nearly 100 percent in 2017-2018, and home
care turnover ran close to 75 percent in 2024.6 At the same
time, adult day programs have shrunk in many states, respite
care is chronically underfunded, rural areas have especially
thin home care networks, and waiting lists for home- and
community-based services stretch for years in many states.(2)
So families "choose" to provide care only in the narrowest
sense-often there's no alternative, no matter their insurance
or income.
Question:
What federal investments in the paid LTSS workforce would
most reduce unmet need among older adults?
Response:
The federal investments with the largest expected return on
unmet need are: (a) a permanent enhanced Federal Medical
Assistance Percentage (FMAP) for HCBS tied to workforce wage
floors and rebalancing benchmarks; (b) a substantial, sustained
increase in funding for the Older Americans Act, including
Title III-E for caregivers and nutrition and transportation
programs; (c) federal floor wages and benefits for Medicaid-
funded direct care workers; (d) reinvigorated Money Follows the
Person and full implementation of the Ensuring Access to
Medicaid Services rule; and (e) funded apprenticeships and
career ladders for the direct care workforce.
Question:
What legislative opportunities are there to better support
family caregivers, such as enhanced training, financial relief,
or increased access to respite care?
Response:
Several bills now before Congress map directly onto the
needs you've identified-financial relief, training, respite
care, and access to care.
On financial relief, several bills stand out. The Social
Security Caregiver Credit Act (S. 4396 / H.R. 8490) would
credit eligible caregivers with up to five years of deemed
wages toward their Social Security benefits, addressing the
fact that total wage, pension, and Social Security losses due
to caregiving exceed $300,000 over a lifetime. The
Multigenerational Home Caregiver Credit Act (S. 3295 / H.R.
7584) would establish a $2,000 nonrefundable tax credit for
adult family members who live with an aging relative and
provide at least 10 hours per week of qualifying care. The
FAMILY Act (S. 2823 / H.R. 5390) would establish the country's
first comprehensive national paid family and medical leave
program: up to 12 weeks of partial wage replacement. And the
HELP Copays Act (S. 864 / H.R. 6423) would require insurers and
pharmacy benefit managers to count copay assistance toward a
patient's deductible and out-of-pocket maximum.
On respite care and training, the foundation is the Older
Americans Act reauthorization (S. 2120), which underpins the
home- and community-based services system; its National Family
Caregiver Support Program (Title III-E) is the only federal
program dedicated specifically to supporting family caregivers-
funding respite, training, counseling, and information and
referral services. Paired with it, FY 2027 appropriations would
direct $256 million to the National Family Caregiver Support
Program and $20 million to the Lifespan Respite Care Program,
given that more than a third of caregivers want respite and
only 14 percent receive it.
On access to care and earlier diagnosis, the ASAP Act (S.
3267 / H.R. 6130) would permit Medicare to cover FDA-cleared
blood-based screening tests for Alzheimer's and related
dementias. Under current law, Medicare is barred from covering
these tests without specific congressional authorization, and
the result is that fewer than 10 percent of people are
diagnosed at the mild cognitive impairment stage, when
treatment is significantly more effective. For the millions of
caregivers supporting a parent or grandparent with cognitive
decline, earlier diagnosis means a longer window for treatment
and planning-and a delay in the most intensive and costly
phases of dementia care.
On easing the burden of navigation, the ABC Act (S. 1227 /
H.R. 2491) would require CMS, the Social Security
Administration, and CHIP to identify ways to reduce
administrative burden on family caregivers-a response to the
fact that one in four caregivers explicitly say they want help
with forms, paperwork, and eligibility for services.
Finally, these bills are most effective inside a coherent
national framework: the National Strategy to Support Family
Caregivers, the first-ever federal roadmap, authorized by the
bipartisan RAISE Family Caregivers Act. The path forward is to
reauthorize the RAISE Act through the Older Americans Act
reauthorization, double the implementation funding, set
measurable targets, and hold federal agencies accountable.
Question:
What lessons can we draw from the American Rescue Plan
Act's enhanced federal match for HCBS, and what would it take
to translate that one-time investment into durable HCBS system
improvements?
Response:
Section 9817 of the American Rescue Plan Act gave
qualifying states a temporary boost-a 10 percentage-point
increase in the federal share of Medicaid spending (the FMAP)
for certain home- and community-based services. As a result,
states expected to spend nearly $37 billion to enhance, expand,
or strengthen those services, including essential caregiver
supports like self-directed programs.(8) The lesson is
encouraging but incomplete: even a temporary increase in the
federal match produced fast, measurable gains-higher pay rates,
recruitment and retention bonuses, shorter waiting lists, and
new technology investments. But states warned all along that
one-time money couldn't sustain ongoing wage increases or new
services.
Turning that one-time infusion into lasting change takes a
permanent enhanced FMAP for these services-tied to
transparency, minimum wage floors for workers, and real
progress on rebalancing. It also takes making these services a
mandatory Medicaid benefit, so states can't pull back the
moment federal support fades.
Question:
How could streamlining and simplifying Medicaid HCBS waiver
authorities reduce administrative complexity for states and
beneficiaries navigating the patchwork system?
Response:
The current patchwork-1915(c) waivers, 1915(i) and 1915(k)
state plan options, 1915(j) self-direction, and 1115
demonstrations-creates real administrative drag for states and
bewildering complexity for families navigating eligibility,
services, and waiting lists. The Bipartisan Policy Center has
recommended that Congress streamline the authority process into
one that captures the existing flexibilities within current
waivers, such as the commonly used 1915(c) waiver, preserving
access while making service delivery less administratively
complex(9). A consolidated HCBS authority-with a single set of
person-centered planning, conflict-free case management, and
quality reporting standards-would reduce state administrative
cost, shrink approval timelines, and let beneficiaries move
across services and life stages without re-qualifying every
time their needs change.
Question:
What is your assessment of how the current federal-state
HCBS financing structure is performing, and what reforms would
most meaningfully expand older adults' ability to receive care
at home and in the community?
Response:
The current structure is producing slow rebalancing but at
the cost of profound inequity: where you live and what your
disability label is determine whether you get services or sit
on a multi-year list. From 2022 to 2023, HCBS users as a
percentage of total Medicaid LTSS users grew from 86.6 to 87.1
percent, while HCBS expenditures as a percentage of total
Medicaid LTSS expenditures fell from 64.6 to 63.8 percent(10)-
signaling that more people are getting some HCBS but at thinner
per-person service levels. The reforms most likely to expand
older adults' ability to age at home are: making a core HCBS
benefit mandatory in Medicaid (mirroring the existing mandatory
status of nursing facility care); a permanent enhanced FMAP for
HCBS; federally enforced minimum service standards; dedicated
waiting-list reduction funding; and Medicare coverage of a
meaningful long-term care benefit so that Medicaid is not the
only payer of last resort.
Question:
What actions should federal policymakers take to increase
recruitment and retention of direct care workers, and how would
those policies improve the experiences of family caregivers?
Response:
Despite incremental gains, the median hourly wage for
direct care workers was just $17.36 in 2024, with median annual
earnings just under $26,000(7), and Medicaid is the dominant
payer for HCBS services-meaning federal policy effectively sets
wages in this field. Federal actions that would most move
recruitment and retention include: a required pass-through of
rate increases to worker compensation; federally funded
apprenticeship and certification pathways with stackable
credentials; immigration pathways for direct care occupations;
health and retirement benefits parity; and OSHA-backed safety
standards. For family caregivers, a stable, decently paid
workforce means actually being able to find a worker-reducing
the burden of last-minute call-offs, training a revolving door
of aides, and filling unfilled hours themselves.
Question:
Can you speak to why investing in the direct care workforce
including improving wages, benefits, training, labor
protections, and career pathways is critical to meeting the
nation's long-term care needs? And what should Congress be
doing to support and stabilize the direct care (caregiving)
workforce so that seniors, people with disabilities, and
families can actually access the care they need?
Response:
PHI's twenty years of research has documented chronic
challenges facing a direct care workforce comprised largely of
women, people of color, and immigrants, who-despite incremental
wage growth and the importance of their work-still face
significant economic instability(7). The HCBS workforce is
projected to grow more than any single occupation in the coming
decade, creating an estimated 700,000-plus new jobs, but
turnover runs upwards of 80 percent(9). A workforce in which a
significant share of workers live in low-income households and
rely on public assistance cannot be the foundation of care for
the largest aging cohort in U.S. history(7). Congress should:
(1) fund apprenticeship, training, and advanced-role pathways
(including universal direct care worker credentials and
advanced aide roles); (2) extend FLSA and NLRA protections
fully to home care workers; (3) make permanent the enhanced
HCBS FMAP; and (4) invest in workforce data infrastructure so
states can target shortages.
Question:
How would passing the Domestic Workers Bill of Rights
support the direct care workforce that many sandwich caregivers
rely on?
Response:
There are an estimated 2.2 million domestic employees
across the United States working in private homes to provide
direct care, child care, and house-cleaning services(11), and
they remain partially or wholly excluded from foundational
labor protections enacted in the 1930s. The federal Domestic
Workers Bill of Rights Act (S. 3396 / H.R. 3971, 119th
Congress) would extend common workplace protections to this
workforce (overtime, paid sick days, freedom from
discrimination and harassment); require written agreements and
privacy protections; and provide a temporary increase in the
federal medical assistance percentage for Medicaid-funded
services delivered by domestic employees(11,12). For sandwich
caregivers, this matters because stable, fairly paid home care
workers are far more likely to stay in the job, reducing the
constant retraining and gap-filling that families currently
absorb, and the bill's FMAP boost would channel real wage gains
to the workers families depend on most.
Senator Raphael Warnock
Question:
Nearly 42 percent of Georgians aged 65 or older depend on
Social Security benefits for at least half of their income.
These benefits help them afford daily expenses and alleviate
the financial burden on sandwich caregivers, who cover
essential services for older adults. However, since January
2025, the Trump administration has cut more than 7,000 Social
Security Administration (SSA) employees, and Georgia lost
nearly 10 percent of its SSA workforce between Fiscal Year
2024-2025. Due to massive workforce cuts, Georgians must wait
weeks to schedule an appointment with the SSA field office and
an average of 11 months for disability claims.
How can Congress improve SSA customer service to ensure
older adults in states like Georgia have access to their hard-
earned benefits?
Response:
Congress should: (1) restore SSA's frontline workforce
through dedicated, multi-year administrative funding with
staffing floors at field offices, prioritizing states like
Georgia that have lost a disproportionate share; (2) require
SSA to publicly report disaggregated, state-level wait-time and
backlog data, after the agency's mid-2025 removal of detailed
customer service metrics obscured the impact of staffing cuts;
and (3) halt further field office closures, since older adults
and their family caregivers depend disproportionately on in-
person service. Every delayed benefit pushes a Georgia family
closer to crisis and a caregiver closer to leaving the
workforce-a cost the public system ultimately absorbs anyway.
Question:
Sandwich caregivers face mounting stress from managing the
rising cost of child care while also caring for their aging
family members. Compared to average parents who spend 20
percent of their annual income on child care, they spend an
additional 17 percent of their annual income caring for older
adults. On April 11, 2025, Senator Bennet and I co-introduced
S. 1393, the American Family Act, which would expand the Child
Tax Credit (CTC) by providing a $4,320 credit for families with
children under six years old and a $3,600 credit for families
with children aged 6-17.
How would an increase in the CTC help sandwich caregivers
in Georgia, who carry the financial burden of supporting two
generations of their families?
Response:
According to National Alliance for Caregiving and AARP
research, 29 percent of family caregivers are in the sandwich
generation, rising to 47 percent among caregivers under 50, and
especially common among Latino (43 percent) and Black (36
percent) caregivers-populations strongly represented in
Georgia.(1) The financial pressure is concrete: one in four
family caregivers are taking on debt, half report a negative
financial impact from caregiving, and one in five cannot afford
basic needs like food.
An expanded Child Tax Credit is one of the most effective
tools we have to relieve that pressure. The American Family Act
would increase the credit's value from $2,000 to $6,360 for
newborns, $4,320 for children age one to six, and $3,600 for
children age six to seventeen, and-critically-deliver it as a
refundable, monthly advance payment. For a sandwich caregiver
in Georgia, monthly cash flow is the difference between
covering this month's home health aide and skipping it; between
keeping a child in licensed care and patching together informal
arrangements that pull the caregiver out of the workforce. The
2021 American Rescue Plan version of the expanded CTC cut child
poverty roughly in half almost overnight; restoring and
improving on that policy through the American Family Act would
do the same for the families holding up two generations at
once. Paired with the caregiving-specific investments-HCBS,
paid leave, the Credit for Caring Act, and a stabilized direct
care workforce-the expanded CTC is a foundational piece of a
comprehensive family economic policy, not a competing one.
Sources & Citations
1. AARP and National Alliance for Caregiving. Caregiving
in the U.S. 2025. Washington, DC: AARP, July 24, 2025. DOI:
10.26419/ppi.00373.001. https://www.aarp.org/pri/topics/ltss/
family-caregiving/caregiving-in-the-us-2025/
2. KFF. "Medicaid Home Care (HCBS) in 2025." Based on the
23rd KFF survey of officials administering Medicaid home care
programs in all 50 states and DC (April-July 2025). https://
www.kff.org/medicaid/medicaid-home-care-hcbs-in-2025/
3. KFF. "States' Management of Medicaid Home Care Spending
Ahead of H.R. 1 Effects," November 2025. https://www.kff.org/
medicaid/states-management-of-medicaid-home-care-spending-
ahead-of-h-r-1-effects/
4. McGarry, B. E., & Grabowski, D. C. (2023). Medicaid
Home and Community-Based Services Spending for Older Adults: Is
There a "Woodwork" Effect? Journal of the American Geriatrics
Society, 71(10), 3143-3151. DOI: 10.1111/jgs.18478. https://
agsjournals.onlinelibrary.wiley.com/doi/10.1111/jgs.18478
5. Caldwell, J., Bixby, L., Siegel, R., Pickern, S.,
Stober, K., & Cahn, D. (April 2026). Home and Community-Based
Services Improve Outcomes While Reducing Costs [Research
Brief]. Community Living Policy Center, Lurie Institute for
Disability Policy, Brandeis University. https://
heller.brandeis.edu/community-living-policy/research-policy/
publications/pdfs/briefs/hcbs-improve-outcomes-and-reduce-
costs.pdf
6. PHI. "Understanding the Direct Care Workforce" (updated
2025). https://www.phinational.org/policy-research/key-facts-
faq/
7. PHI. Direct Care Workers in the United States: Key
Facts 2025. September 2025. https://www.phinational.org/
resource/direct-care-workers-in-the-united-states-key-facts-
2025/
8. Centers for Medicare & Medicaid Services.
"Strengthening and Investing in Home and Community Based
Services for Medicaid Beneficiaries: American Rescue Plan Act
of 2021 Section 9817." https://www.medicaid.gov/medicaid/home-
community-based-services/guidance-additional-resources/
strengthening-and-investing-home-and-community-based-services-
for-medicaid-beneficiaries-american-rescue-plan-act-of-2021-
section-9817
9. National Association of Counties. "Medicaid cuts
threaten home and community-based care," March 2025 (with
comments from Lisa Harootunian, Bipartisan Policy Center, and
Stephen McCall, PHI). https://www.naco.org/news/medicaid-cuts-
threaten-home-and-community-based-care
10. Carpenter, A., Stepanczuk, C., Murray, C., & Wysocki,
A. (2025). Trends in Users and Expenditures for Home and
Community-Based Services as a Share of Total Medicaid Long-Term
Services and Supports Users and Expenditures, 2023. Mathematica
for the Centers for Medicare and Medicaid Services. https://
www.medicaid.gov/medicaid/long-term-services-supports/
downloads/ltss-rebalancing-brief-2023.pdf
11. U.S. Congress. Domestic Workers Bill of Rights Act, S.
3396 (Sen. Gillibrand, introduced December 9, 2025) and H.R.
3971 (Rep. Jayapal, introduced June 16, 2025), 119th Congress
(2025-2026). https://www.congress.gov/bill/119th-congress/
senate-bill/3396/text
12. National Domestic Workers Alliance. "As Care Remains
Essential, Federal Domestic Workers Bill of Rights Reintroduced
to Extend Long-Overdue Labor Protections," June 16, 2025.
https://www.domesticworkers.org/press-releases/as-care-remains-
essential-federal-domestic-workers-bill-of-rights-reintroduced-
to-extend-long-overdue-labor-protections/
U.S. Senate Special Committee on Aging
"Caught in the Middle: Supporting Families in the Sandwich Generation"
May 13, 2026
Questions for the Record
Josh Protas
Ranking Member Kirsten E. Gillibrand
Question:
How do we best support older Americans who do not have any
family members to serve as caregivers?
Response:
For older Americans without family caregivers, robust
investment in community-based services like Meals on Wheels is
not optional. It is essential. The scale of the need is
significant: 1 in 2 seniors living alone lack the income to pay
for basic needs,(1) and 12 million older adults face financial
challenges that impact their ability to age at home.(2) For
these individuals, community-based programs made possible
through the Older Americans Act help with critical support and
assistance to fill in the gaps and enable seniors to remain at
home, where they prefer to be.
These programs serve as a direct lifeline, providing
nutritious meals and critical safety and wellness checks,
social connection, and referrals to other health and supportive
services.(1) For seniors without family nearby, Meals on Wheels
volunteers are often the only people who check on them
regularly, serving as the critical first line of defense
against falls, medical emergencies, and untreated health
conditions. The stories of Robin in Norman, Oklahoma, who was
in cardiac distress when Meals on Wheels volunteers arrived and
called 911, and Patricia in San Diego, California, whose home
fire was extinguished by a volunteer, illustrate how these
services can be lifesaving for seniors with no one else to look
out for them.(1)
Nearly 14 million older Americans are threatened by or
experiencing hunger, with 1 in 2 seniors living alone lacking
the income to pay for basic needs.(2) For many vulnerable
seniors, and particularly for those without family, they have
no supplemental source of support to fill in the gaps to make
ends meet. A senior on a four-month waitlist for Meals on
Wheels services with family nearby may have someone able to
bring groceries or check in. A senior on that same waitlist
with no family may be left to struggle and suffer alone.
Addressing isolation is not a secondary concern for seniors
without family support. Meals on Wheels volunteers are often
the only regular human contact a home-delivered meal client
receives.(1) Social isolation and loneliness among older adults
are serious public health crises linked to increased risks of
depression, cognitive decline, heart disease, and mortality.
Research has found that social isolation among older adults
leads to an extra $6.7 billion in Medicare spending annually,
comparable to the costs associated with having high blood
pressure or arthritis.(1)
Despite the effectiveness of Meals on Wheels services in
meeting the needs of vulnerable seniors, community-based
programs are experiencing growing need, high costs, and
widening funding gaps. One in three local Meals on Wheels
providers maintains a waitlist, with seniors waiting an average
of four months for vital meals, connection and care, and in
some cases, seniors must wait two or more years for the
services they need and deserve.(1) Nearly two-thirds of
providers with waitlists serve rural areas, where there is
often less access to supportive services.
Federal funding has not kept pace with growing need for
years. Between 1999 and 2023, the number of older adults
experiencing low or very low food security quadrupled; but
during that same period, the total purchasing power of OAA
Nutrition Program funding measured in 2024 dollars declined.
The OAA Nutrition Program served roughly the same number of
seniors (2.6 million) in 2024 as it did in 1999, despite
dramatic growth in the senior population over that period.1
There are an estimated 2.5 million low-income, food insecure
older adults who are not receiving the home-delivered or
congregate meals they need.
Policymakers should prioritize robust and sustained funding
for the OAA Nutrition Program to eliminate waitlists and
dramatically expand the number of seniors the network can
reach. Congress should also support a strong and timely OAA
reauthorization to strengthen and expand the full network of
community-based aging services. We have the infrastructure and
the knowledge to reach millions more seniors in need. What is
missing is the federal investment to make it possible.(1)
Ensuring that no older American without family support is left
hungry, isolated, or unsafe is not only a moral imperative, it
is also a cost-effective and fiscally responsible one: Meals on
Wheels services can be provided to a vulnerable senior for an
entire year for roughly the same cost as one day in the
hospital or twelve days in a nursing home.(1)
Question:
For those seniors who do have family members, either as
part of their immediate household or who reside long-distance,
how do we as policymakers structure and resource available
programs and services to alleviate the need for families to
provide hidden unpaid caregiving?
Response:
Family caregiving is often invisible to policymakers, yet
its scale and economic weight are enormous. Family caregivers
provided over $1 trillion in economic value in 2024 through
49.5 billion hours of caregiving, a dramatic increase from the
$350 billion estimated in 2006.(3) According to the AARP and
the National Alliance for Caregiving's Caregiving in the US
2025 report, 63 million Americans are caregivers, representing
nearly one in four adults. Of these, 29% are sandwich
generation caregivers supporting both children and adults, half
report a negative financial impact due to caregiving, and one
in five caregivers cannot afford basic needs like food.(4) The
workforce consequences are significant: sandwich generation
caregivers are 5.7% less likely to participate in the labor
force and, for those employed, work five hours less per week
compared to non-caregiving workers, with more pronounced
effects on women.(5) These are not marginal hardships. They are
widespread, measurable, and addressable through smarter public
investment.
For families with aging loved ones living in the same
household, the daily demands of caregiving compound the
pressures of work and child-rearing in ways that can become
unsustainable. For those providing long-distance care, the
challenges are different but equally serious: the inability to
be physically present creates anxiety, generates costly and
disruptive travel, and leaves seniors vulnerable in the gaps
between visits. In both cases, community-based services like
Meals on Wheels serve as a critical bridge. They provide
regular nutritious meals, conduct wellness and safety checks,
offer social connections and make referrals to other health and
supportive services. These community-based programs provide
daily, consistent support that family caregivers cannot always
provide due to work, distance, or their own family
obligations.(1)
A study published in Innovation in Aging by researchers
from Brown University and Johns Hopkins University, conducted
through in-depth interviews with 85 clients and 14 caregivers
across 13 Meals on Wheels programs, documented the concrete
ways in which Meals on Wheels alleviates caregiver burden.
Although clients and caregivers reported that Meals on Wheels
eased some caregiving burden, they also identified substantial
unmet needs. Caregivers reported substantial burden and
suggested that they would benefit from assistance with
financial and care planning, identification of additional
available formal support, and access to respite care.(6) A
companion study published in JAMA Network Open and funded by
the Patient-Centered Outcomes Research Institute found that
home-delivered meals relieved stress and financial strain on
family caregivers, giving them more time for their own health
and well-being.(7) For sandwich generation caregivers
especially, Meals on Wheels can be the difference between being
able to maintain employment and being forced to reduce hours or
exit the workforce, with long-term economic consequences for
families and the broader economy.(1)
Meals on Wheels programming can also support the health and
wellbeing of caregivers. Only 36% of caregivers report very
good mental health, and 27% say their caregiving
responsibilities cause them a great deal of stress.(5) Local
providers that offer predictability and reliability in meeting
the daily needs of elderly loved ones allow caregivers to focus
more fully on their work, their children, and quality time with
their older relative, rather than operating in a constant state
of worry and crisis management.(1) The story of Claire in
Thousand Oaks, California, a homebound senior who lost her
husband and lives hundreds of miles from family, illustrates
this clearly. Her Meals on Wheels volunteer became not just a
meal deliverer but a source of genuine social connection and
emotional support, providing her distant family with the
reassurance that someone was present and caring for her.(1)
To alleviate the burden of hidden unpaid caregiving more
significantly, policymakers should act on several fronts:
First, Meals on Wheels America urges Congress to adequately
fund the OAA Nutrition Program to meet growing demand,
eliminate waitlists, and ensure that the network has the
capacity to reach the estimated 2.5 million low-income, food
insecure older adults not currently receiving the meals they
need.(1)
Second, policymakers should prioritize effective caregiver
supports and resources. These include financial assistance, tax
credits and respite care. Meals on Wheels America recommends
investment in expanded access to information about local
programs; many caregivers remain unaware of the community
resources available to them.8 Research on state-level
approaches has found that the most effective state strategies
to support family caregivers of older adults include financial
support for working caregivers, caregiver assessment and care
planning, and expanded access to respite care, particularly for
those at elevated risk of institutionalization.(9)
Third, community-based aging services must be made widely
available, easily accessible, and sufficiently resourced so
that families are not forced into crisis-driven care decisions,
such as premature and costly institutionalization. Meals on
Wheels services can be provided to a vulnerable senior for an
entire year for roughly the same cost as one day in the
hospital or twelve days in a nursing home.(1) The cost of not
investing in these services falls on families, on caregivers,
and ultimately on taxpayers.
Question:
What are some of the health outcomes related to isolated
older adults receiving home-delivered meals?
Response:
Older adults enrolling in Meal on Wheels have high rates of
food insecurity, nutritional risk, loneliness and chronic
conditions factors that are associated with poorer health
outcomes, increased health care utilization, and higher health
care costs.(10) Recent research from the Deliver-EE clinical
trial found that seniors accessing Meals on Wheels services
experience food insecurity at rates five times higher than
typical U.S. older adults (47% versus 9%), and many report
financial strain and functional limitations that make obtaining
and preparing nutritious food difficult.(11) Additionally, more
than half of participants lived alone, and approximately one in
five reported frequently feeling isolated from others.
Meals on Wheels services help to effectively address food
insecurity, malnutrition, poor diet quality and loneliness
while reducing the likelihood of falls and other household
injuries. These services lead to reduced need for costly
hospital and nursing home care and improve the health and well-
being of the older adults served. Regular meal delivery and
contact with volunteers or staff also provide meaningful social
connections for isolated older adults. The consequences of
social isolation are substantial. Adjusted for inflation to
August 2025 dollars, social isolation among older adults is
associated with an estimated $9 billion in Medicare spending
annually. This estimate was calculated using the U.S. Bureau of
Labor Statistics Consumer Price Index Inflation Calculator and
is based on the original estimate of $6.7 billion in excess
Medicare spending attributable to social isolation in 2012
dollars.(12)
The impact of these services is reflected in participant-
reported outcomes. According to the 2023 National Survey of
Older Americans Act Participants, 79% of home-delivered meal
participants reported that the meals helped improve their
health, and 91% reported that the meals helped them live
independently in their own homes.(13)
Question:
How have hospitalization rates or nursing home admissions
been affected by nutrition assistance, and how does that
demonstrate the cost-effectiveness of federal investment in
these programs relative to institutional care?
Response:
Investment in community-based nutrition assistance prevents
far more costly downstream expenses. This conclusion is
supported by peer-reviewed studies, national surveys and the
lived experiences of millions of seniors and their families.
Meals on Wheels America's 2023 report, The Case for Meals
on Wheels: An Evidence-Based Solution to Senior Hunger and
Isolation, analyzed 38 studies spanning 1996 to 2023 and found
that Meals on Wheels programs consistently reduce healthcare
utilization and costs, falls, nursing home use, and social
isolation.(14) The program does so while also improving food
security, diet quality, nutritional status, and seniors'
ability to age in place.(1) Multiple studies reviewed in the
report found that participants needed fewer emergency room
visits and experienced fewer hospitalizations and readmissions.
Access to home-delivered meals also allowed seniors to remain
in their homes rather than transfer to nursing facilities, and
92% of home-delivered meal participants report that meals help
them continue to live independently.(1) These improvements
represent a systematic reduction in the most expensive forms of
care our health system provides.
Broader research literature on nutrition assistance and
institutional care reinforces these findings. A Johns Hopkins
University study published in BMC Geriatrics examining nearly
78,000 older adults dually eligible for Medicaid and Medicare
in Maryland found that SNAP participants had a 23% reduced odds
of nursing home admission compared to nonparticipants, and that
an additional $10 of monthly SNAP assistance was associated
with lower odds of admission and fewer days of stay among those
admitted. The implications are significant: modest food
assistance investments at the front end translate directly to
avoided nursing home costs, which are borne primarily by
Medicaid.
Medically tailored meals, which are offered by many local
Meals on Wheels providers, are associated with a 49% reduction
in inpatient admissions, 72% fewer admissions to skilled
nursing facilities, and 16% lower health care costs compared to
individuals with similar demographic characteristics who did
not receive them.(15) A landmark 2025 study published in Health
Affairs by researchers at Tufts University estimated that
nationwide implementation of medically tailored meals could
save approximately $23 billion in health care costs in the
first year alone and prevent more than 2.6 million
hospitalizations annually related to complications from
diabetes, heart disease, and cancer. Overall, the researchers
found that medically tailored meal programs were linked to a
47% reduction in annual hospitalizations and a 19.7% reduction
in annual healthcare spending.(16) Research from Morrison
Healthcare further found that participants in medically
tailored meal programs saw a 30% decrease in emergency
department visits and a 37% decrease in inpatient length of
stay, with average savings of $12,046 in healthcare costs per
participant while enrolled.(17)
The cost comparison between nutrition assistance and
institutional care is profound. Meals on Wheels can serve a
vulnerable senior for an entire year for roughly the same cost
as a single day in the hospital or twelve days in a long-term
care facility.(1) Among individuals receiving medically
tailored meals, the average monthly medical expenditures are
40% lower than for a matched group not receiving meals, $843
versus $1,413 per month. Senior malnutrition alone costs an
estimated $76 billion a year in health care expenses. Older
adult falls cost the health care system an estimated $100
billion annually, with most of that cost paid by Medicare.
Research demonstrates that social isolation among older adults
leads to an extra $6.7 billion in Medicare spending per year,
comparable to the costs associated with having high blood
pressure or arthritis.(1) Each of these conditions,
malnutrition, falls, and isolation, is directly addressed by
the Meals on Wheels model, which provides nutritious meals,
safety checks at the point of delivery and regular human
contact for seniors who would otherwise have none.
Widening shortfalls in federal OAA Nutrition Program
funding have exacerbated the challenges of a rapidly growing
senior population and rising costs for food, fuel and program
operations, leading to widespread and mounting unmet need. The
number of older adults experiencing low or very low food
security quadrupled between 1999 and 2023. During this same
period, the purchasing power of OAA Nutrition Program funding
adjusted to 2024 dollars declined. The OAA Nutrition Program is
currently serving roughly the same number of seniors in 2024 as
it did in 1999, despite a dramatically larger and more
vulnerable senior population.(1) One in three local Meals on
Wheels programs maintains a waitlist, with seniors waiting an
average of four months for vital meals. Satish, a senior in
Sanford, Florida, waited three years on a waitlist of more than
400 people before receiving services. During that time his
health deteriorated, his energy dwindled, and his world shrank.
The cost of that three-year delay in terms of health decline,
potential hospitalizations, and reduced independence almost
certainly exceeded by a wide margin what it would have cost to
him with Meals on Wheels services from the start.(1)
The failure to provide adequate federal funding for Meals
on Wheels services results in significant downstream costs for
seniors, family caregivers and taxpayers. Seniors who do not
receive nutrition assistance, safety checks, and social
connection are more likely to be at risk for falls,
malnutrition, food insecurity, diet-related chronic diseases,
social isolation and loneliness and the cascading challenges
associated with these conditions. They are more likely to face
emergency room visits, hospitalizations and premature nursing
home placements. The costs for these situations are borne by
Medicare, Medicaid, families, and taxpayers at rates profoundly
higher than the modest costs of the community-based
interventions that could have prevented them. Meals on Wheels
services are an essential, cost-effective and fiscally
responsible investment.(1)
Question:
How do restrictive SNAP work requirements fail low-income
sandwich generation?
Response:
The core problem with restrictive SNAP work requirements
for sandwich generation caregivers is that the program does not
consistently or clearly account for the realities of unpaid
elder caregiving. The One Big Beautiful Bill Act, enacted in
July 2025, made significant changes to SNAP work requirements,
including raising he upper age threshold for work requirements
from 54 to 64, and changing the caregiver exemption to only if
the youngest child in the household is under age 14, down from
the previous threshold of under age 18.(18) The Congressional
Budget Office estimates that the law's SNAP reductions,
approximately $187 billion over 10 years, will result in
roughly four million people losing SNAP benefits.(19) These
changes create particular challenges for low-income sandwich
generation caregivers, who are simultaneously caring for
children and aging relatives.(1)
While some caregivers may be able to seek exemptions or
demonstrate that caregiving responsibilities satisfy work
requirement obligations, doing so often requires navigating
confusing and cumbersome state specific administrative
processes and documentation requirements.(20) The statutory
framework explicitly recognizes caregiving for young children
but provides far less direct recognition for unpaid elder
caregiving, despite its substantial time commitment and
economic impact.(21) 16 million Americans provide unpaid care
to aging loved ones while also raising children or supporting
younger family members. These caregiving responsibilities often
result in lost wages, reduced retirement savings, and adverse
physical and mental health outcomes, including physical strain,
emotional stress, and social isolation.(1) For many low-income
caregivers, SNAP helps offset income lost because of caregiving
responsibilities. When access to benefits becomes contingent on
work requirements that do not readily account for those
responsibilities, caregivers may face difficult choices between
maintaining food assistance, meeting administrative requirement
and continuing to provide essential care for aging family
members.
The threat to seniors is direct and serious. Meals on
Wheels functions as a partnership with family caregivers, not a
replacement for them, providing regular wellness and safety
checks, social connection, referrals to transportation and
health care resources, and an early warning system when health
or safety concerns arise.(1) This system depends on caregivers
remaining able to provide some baseline level of informal
support: coordinating care, checking in, being available for
emergencies, and supplementing meal delivery on days when Meals
on Wheels doesn't deliver. If SNAP work requirements
destabilize the financial footing of low-income sandwich
generation caregivers, forcing them into more hours of paid
work to maintain eligibility, the time and energy they devote
to their aging relatives diminishes and the informal support
network surrounding a senior can fray quickly.(1) New SNAP work
requirements now include previously exempt individuals ages 55
to 64, and for many seniors, these changes come at a time when
fixed incomes and rising costs already make it difficult to
consistently afford food and healthcare, resulting in greater
barriers to accessing nutrition assistance.
The Meals on Wheels network is already badly strained,
making additional pressure from SNAP cuts especially dangerous.
One in three local Meals on Wheels providers maintains a
waitlist, with seniors waiting an average of four months for
vital meals and in some cases two or more years. There are an
estimated 2.5 million low-income, food insecure older adults
not currently receiving the home-delivered or congregate meals
they need.(1) Meals on Wheels America has warned that if more
older Americans lose access to SNAP and are at risk of food
insecurity and malnutrition, it will put greater pressure on
senior nutrition providers that are already struggling to keep
up with existing demand. Meals on Wheels providers do not have
the resources to address increased need without significant
additional federal investment.(3)
Restrictive SNAP work requirements fail low-income sandwich
generation caregivers because they treat unpaid elder
caregiving as economically invisible, fail to count it as
qualifying work, ignore the income losses it causes, and risk
weakening family supports in place for aging loved ones. Meals
on Wheels services and family caregivers are critical
complementary supports that bolster the health, well-being and
independence of vulnerable older adults, and policies that
undermine one will inevitably harm both.(1)
Sources & Citations
1. Josh Protas, Chief Advocacy and Policy Officer, Meals
on Wheels America. Testimony for "Caught in the Middle:
Supporting Families in the Sandwich Generation." United States
Senate Special Committee on Aging, May 13, 2026.
2. Meals on Wheels America. "Meals on Wheels America
Issues Statement on House of Representatives' Passage of H.R.
1." May 22, 2025. https://www.mealsonwheelsamerica.org/news/
meals-on-wheels-america-issues-statement-on-house-of-
representatives-passage-of-h-r-1/
3. Meals on Wheels America. "Findings From New Study
Reinforce That Home-Delivered Meals Provide Critical Health and
Social Benefits to Older Adults and Caregivers." September 30,
2025. https://www.mealsonwheelsamerica.org/news/findings-from-
new-study-reinforce-that-home-delivered-meals-provide-critical-
health-and-social-benefits-to-older-adults-and-caregivers/
4. AARP and National Alliance for Caregiving. Caregiving
in the US 2025. Washington, DC: AARP, July 24, 2025. https://
www.aarp.org/pri/topics/ltss/family-caregiving/caregiving-in-
the-us-2025/
5. "Impacts of Sandwich Caregiving on Labor Market
Outcomes." Innovation in Aging, December 31, 2025. https://
www.ncbi.nlm.nih.gov/pmc/articles/PMC12763280/
6. Gadbois, E., Stetten, N., Samuel, L., et al. "Meals on
Wheels and Family Caregiving: Benefits Received and Unmet
Needs." Innovation in Aging, December 31, 2025. https://
academic.oup.com/innovateage/article/9/Supplement--2/
igaf122.479/8412863
7. Meals on Wheels America. "Findings From New Study
Reinforce That Home-Delivered Meals Provide Critical Health and
Social Benefits to Older Adults and Caregivers." September 30,
2025. https://www.mealsonwheelsamerica.org/news/findings-from-
new-study-reinforce-that-home-delivered-meals-provide-critical-
health-and-social-benefits-to-older-adults-and-caregivers/
8. Meals on Wheels America. "Findings From New Study
Reinforce That Home-Delivered Meals Provide Critical Health and
Social Benefits to Older Adults and Caregivers." September 30,
2025. https://www.mealsonwheelsamerica.org/news/findings-from-
new-study-reinforce-that-home-delivered-meals-provide-critical-
health-and-social-benefits-to-older-adults-and-caregivers/
9. "Moving Toward Best Practices in State Approaches to
Supporting Family Caregivers of Older Adults." The Milbank
Quarterly, 2019. https://www.ncbi.nlm.nih.gov/pmc/articles/
PMC6840424/
10. Bernard K, Gadbois E, Clark M, et al. Craving More
Than Meals: Social Isolation Among Older Adults on Meals on
Wheels Waitlists. Innovation in Aging.
11. Samuel L, Gadbois E, Bernard K, et al. The Role of
Food Insecurity in Relation to Meals on Wheels Participation.
Innovation in Aging. 2025
12. Flowers, L., Houser, A., Noel-Miller, C., Shaw, J.,
Bhattacharya, J., Schoemaker, L., & Farid, M. (2017). Medicare
Spends More on Socially Isolated Older Adults. AARP Public
Policy Institute.
13. Administration for Community Living. 2023 National
Survey of Older Americans Act Participants.
14. Meals on Wheels America. The Case for Meals on Wheels:
An Evidence-Based Solution to Senior Hunger and Isolation.
September 2023. Available at: Meals on Wheels America Research
Report.
15. Center for Health Care Strategies. "Medically Tailored
Meals." October 10, 2025. http://www.chcs.org/resource/
medically-tailored-meals/
16. Deng, S., Hager, K., Wang, L., et al. "Estimated
Impact of Medically Tailored Meals on Health Care Use and
Expenditures in 50 US States." Health Affairs, April 2025.
https://www.healthaffairs.org/doi/10.1377/hlthaff.2024.01307
17. Morrison Healthcare. "Medically Tailored Meals
Decrease Healthcare Costs, ED Visits and Inpatient Stays."
September 30, 2025. https://www.morrisonhealthcare.com/case-
studies/medically-tailored-meals-decrease-healthcare-costs-ed-
visits-and-inpatient-stays/
18. Congressional Research Service, Supplemental Nutrition
Assistance Program (SNAP) and Related Nutrition Programs in
P.L. 119-21: An Overview (R48552)
19. Congressional Budget Office. Cost Estimate for H.R. 1,
One Big Beautiful Bill Act. 2025.
20. U.S. Department of Agriculture, Food and Nutrition
Service. Supplemental Nutrition Assistance Program (SNAP) Work
Requirements and Exemptions Guidance.
21. Capital Area Food Bank. "Senior Hunger Conference
2026: Turning Insights Into Action." May 18, 2026. https://
www.capitalareafoodbank.org/blog/2026/05/18/senior-hunger-
conference-2026-turning-insights-into-action/
U.S. Senate Special Committee on Aging
"Caught in the Middle: Supporting Families in the Sandwich Generation"
May 13, 2026
Questions for the Record
Rebecca Preve
Ranking Member Kirsten E. Gillibrand
Question:
How would cuts to Home and Community-Based Services create
added stress for Area Agencies on Aging?
Response:
Cuts to Medicaid under H.R. 1 are likely to affect Area
Agencies on Aging indirectly but significantly, especially
through pressure on home- and community-based services (HCBS),
care coordination programs, and state aging-service budgets.
Anticipated reductions will trigger a cascade: narrowed
Medicaid eligibility will reduce service availability, loss of
coverage will increase unmet need, and both pressures will
intensify demand on an already underfunded system. Although
AAAs are primarily funded through the Administration for
Community Living and the Older Americans Act at the federal
level, they are also dependent upon state and local funding
streams that will be impacted by Medicaid reductions. This is
occurring at a time when the older population is rapidly
increasing, and there has been a continual loss of
institutional settings nationally.
An important additional concern is that AAA networks are
already underfunded relative to existing community needs. Even
before any Medicaid reductions, many AAAs struggle to meet the
needs of older adults and family caregivers who are not
Medicaid-eligible, but still cannot afford private long-term
care, transportation, respite services, or in-home supports.
Waiting lists for all services under the AAA network continue
to grow, as funding has not kept pace with inflation or
population growth. If more older adults lose Medicaid coverage,
lose HCBS access, or turn to AAAs for help after reductions in
state-funded services, AAAs may face increased caseloads,
longer waitlists, increased caregiver burnout and crisis, and
individuals being unsafe in home and community-based settings.
Organizations focused on aging and disability policy
believe that as HCBS is not a federally required program, it
will be one of the first targeted for cuts, as the focus will
be on mandated services.
Several analyses of H.R. 1 note that states may respond to
federal Medicaid reductions by cutting provider payments,
narrowing eligibility criteria, capping waiver slots available,
and reducing any optional long-term services and supports.
The most immediate operational pressures are expected to
begin in late 2026 and 2027, when new eligibility checks and
Medicaid reporting requirements phase in. (benefitsusa.org)
Question:
In what ways does Medicaid's program structure and existing
processes work to prevent fraud among beneficiaries?
Response:
Medicaid fraud in the United States is monitored through a
layered system involving federal agencies, state Medicaid
programs, private contractors, managed care organizations, data
analytics systems, audits, and criminal investigations. Most
anti-fraud efforts focus on providers rather than
beneficiaries, because provider fraud accounts for the largest
financial losses.
The key components to fraud prevention include federal
oversight under the Centers for Medicare and Medicaid Services
(CMS), the Office of the Inspector General (HHS-OIG), the
Department of Justice (DOJ), and the Federal Bureau of
Investigation (FBI). These agencies work to oversee program
integrity requirements for the states, conduct audits and
investigations, prosecute civil and criminal cases, and
investigate large-scale healthcare fraud schemes. The federal
government also operates the Medicaid Integrity Program,
utilizing contractors to audit providers, review billing
patterns, and identify suspicious claims.
Additionally, each state has a Medicaid Fraud Control Unit,
usually housed in the state attorney general's office. These
specialized units investigate provider fraud, patient abuse and
neglect in facilities, and financial exploitation in Medicaid-
funded care settings. These units are jointly funded by federal
and state governments and recover billions each year in
settlements, prosecutions, and penalties. States are also
conducting random audits and payment reviews.
These state and federal agencies also use predictive
analytics and artificial intelligence to find unusual billing
behavior, such as extreme number of patients, duplicate claims,
excessive billing for certain procedures, billing for deceased
patients and geographic outliers.
CMS's Fraud Prevention System uses large claims databases
and algorithmic pattern detection similar to financial fraud
monitoring. Commonly targeted fraud in this system are
typically phantom billing, upcoding, kickback schemes, identity
theft, inappropriate and unnecessary durable medical equipment,
and fraudulent visits. Again, the overwhelming majority of
fraud is on a provider level, not an individual enrollee.
Oversight is also mandated to be provided by Managed Care
Organizations, as many Medicaid recipients are enrolled in MLTC
plans. MLTCs are required to provide utilization review,
provider credentialing, claims audits, and fraud referrals.
States then monitor MLTCs to determine whether they are
complying with anti-fraud regulations.
Fraud is also targeted through employee whistleblowers,
patient complaints, auditors, and law enforcement. The False
Claims Act encourages whistleblowers to come forward by
allowing them to file lawsuits and be provided a portion of
recovery funds if fraud is identified. There is an additional
fraud reporting portal available through HHS-OIG.
Question:
How might these claims of fraud and demand for rigorous
review of services undermine access to HCBS, and how would that
impact the families that rely on this essential support?
Response:
Claims of widespread Medicaid fraud - especially when
paired with demands for more aggressive eligibility reviews,
service authorizations, or utilization controls - can
unintentionally undermine access to home- and community-based
services (HCBS), even for people who are fully eligible and
legitimately need care.
HCBS programs already operate with extensive oversight,
documentation requirements, care assessments, and periodic
eligibility reviews. When additional layers of scrutiny are
added in response to fraud concerns, the practical effect is
often slower access to services, increased administrative
burden, and greater instability for older adults, people with
disabilities, and family caregivers. At the individual level
these impacts can include delays in approving services or
renewing eligibility, interruptions of personal care hours,
additional paperwork and reassessments, stricter prior
authorizations, increases in denials, and provider withdrawal
from Medicaid due to administrative burden and lower
reimbursements.
For families, these disruptions can be significant because
HCBS often functions as the support system that allows an older
adult or person with a disability to remain safely at home
rather than enter institutional care. Families losing services
are faced with increased unpaid caregiver burden, lost income
due to leaving work or taking time off, social isolation and
loneliness, more frequent emergency department utilization due
to poor health outcomes, and a higher risk of nursing home
placement.
The burden is especially severe for middle- and lower-
income families who do not qualify for extensive private-pay
care but also cannot absorb sudden caregiving costs on their
own. Additionally, many of these services that are available
for non-Medicaid eligible individuals through the AAA network
are waitlisted due to the significant increase in demand.
Rural communities can be particularly vulnerable because
provider networks are already thin. Additional administrative
requirements may cause home care agencies or direct care
workers to stop participating in Medicaid altogether, further
reducing available services.
There is also concern that broad political narratives
emphasizing fraud can create public skepticism around Medicaid
and HCBS programs generally, even though many oversight systems
already exist and most beneficiaries rely on services
appropriately and legitimately. In practice, heightened anti-
fraud systems sometimes identify procedural or paperwork issues
rather than intentional abuse, yet beneficiaries can still lose
services during reviews or appeals.
For Area Agencies on Aging and disability organizations,
this often translates into more crisis calls from family
members, increased demand for caregiver supports, longer
waitlists, and more demand for appeal and enrollment
assistance.
In many cases, the result is not simply reduced spending,
but a shift of care responsibilities from publicly supported
systems onto unpaid family caregivers - most often spouses,
adult children, and other relatives.
Question:
Based on your years of experience working with older adults
and their families in New York state, can you discuss the
importance of New York's strategic plan for supporting family
caregivers?
Response:
The importance of New York's strategic plan for supporting
family caregivers is rooted in a simple reality: family
caregivers are the backbone of the long-term care system, and
without stronger support for them, both families and public
systems face growing strain. Having a State Strategic Plan for
Aging elevates the conversation to the forefront of all
government agencies and future planning, and directly addresses
the two most persistent systemic barriers facing older adults
and people with disabilities: ageism - the devaluation of older
adults as contributing members of society - and ableism, the
systemic exclusion of people with disabilities from equitable
access to services and opportunities.
In communities across New York family caregivers routinely
provide transportation, medication management, personal care,
meal preparation, supervision, financial coordination, and
emotional support for aging relatives. The majority of this
care is unpaid, often provided while caregivers are also
balancing employment, raising children, or managing their own
health concerns.
Through decades of work with older adults and caregivers, I
have witnessed many families reach crisis points not because
they are unwilling to provide care, but because they lack
adequate support, respite, training, financial stability, or
access to services.
New York's Master Plan for Aging included family caregivers
because it recognizes caregiving as a public health, workforce,
and economic issue - not simply a private family
responsibility. The plan helps establish a coordinated
statewide framework to expand respite and caregiver supports,
improve access to information and navigation, increase
caregiver training and mental health support, address workforce
shortages in the home, improve coordination across systems, and
allow older adults to remain in homes and communities for as
long as possible.
The plan is especially significant given New York's aging
population and growing demand for home- and community-based
services (HCBS). As more older adults prefer to age at home,
family caregivers increasingly fill gaps created by workforce
shortages, rising long-term care costs, and limited
institutional capacity.
From the perspective of aging service providers, strategic
caregiver investments are also cost-effective. Supporting
caregivers can help delay or prevent nursing home placement,
reduce emergency department utilization, and lower overall
Medicaid expenditures - making caregiver support one of the
highest-return investments a state can make in its long-term
care system.
Importantly, New York's caregiver strategy acknowledges
that caregiver support is not only about preventing hardship -
it is about preserving dignity, independence, and quality of
life for older adults and the people who care for them.
As Medicaid, HCBS, and aging-service systems face
increasing pressure nationally, a comprehensive caregiver
strategy gives New York a framework for responding proactively
rather than reactively to the growing demands placed on
families and community-based aging networks.
Question:
How would other states benefit from drafting similar plans
like I am working to do with my Strategic Plan for Aging Act?
Response:
Other states could benefit significantly from developing
strategic plans like New York's because these approaches
encourage states to prepare systematically for the realities of
an aging population rather than responding only after crises
emerge.
A statewide aging strategy creates a coordinated framework
for addressing the interconnected challenges facing older
adults, family caregivers, healthcare systems, workforce
development, housing, transportation, nutrition, and long-term
care. Without that kind of planning, aging services are often
fragmented across agencies and programs, making it difficult
for families to navigate support or for states to respond
efficiently to growing need.
States that adopt comprehensive aging plans could benefit
in key ways such as better coordination between all systems,
improving support for family caregivers, making the case for
investments into HCBS services, identifying gaps in services
and workforce, and more efficiently using public resources.
A strategic plan also helps states shift from a reactive
model to a preventive one. Instead of focusing primarily on
institutional care after someone enters crisis, states can
invest earlier in caregiver support, home modifications,
nutrition programs, transportation, dementia services, and
community-based supports that help older adults remain
independent longer.
Plans modeled after New York's approach can also elevate
the role of family caregivers as essential partners in long-
term care policy. Across the country, millions of unpaid
caregivers provide care that would otherwise fall to Medicaid-
funded systems or institutional providers. Supporting
caregivers through respite, training, workplace flexibility,
and navigation services can improve both family stability and
system sustainability.
Another important benefit is accountability. Strategic
aging plans establish measurable goals, timelines, and cross-
agency collaboration, helping states evaluate whether policies
are improving outcomes for older adults and caregivers.
Question:
How does keeping the Administration for Community Living
intact ultimately benefit sandwich caregivers?
Response:
Keeping the Administration for Community Living (ACL)
intact benefits sandwich caregivers because ACL serves as one
of the primary federal agencies coordinating the programs,
funding, and infrastructure that help families care for both
older adults and people with disabilities while also balancing
work and child-rearing responsibilities. The organization was
founded specifically for the needs of Older Americans and
people with disabilities to have a separate and distinct
representation and support. ACL is also responsible for
providing State Unit on Aging support, and for providing grant
funding opportunities for aging and disability populations.
ACL helps sustain services such as caregiver support, home
delivered and congregate meals, transportation, evidence-based
wellness programs, caregiver education and support groups,
dementia services, benefits counseling, falls prevention
programs, elder rights protections, and local AAAs.
ACL also plays a unique coordinating role by integrating
aging and disability policy rather than treating them as
separate systems. That matters for sandwich caregivers because
many families navigate multiple overlapping needs at once -
such as caring for an older parent with dementia while also
supporting an adult child with disabilities or children with
behavioral health needs.
If ACL were weakened, fragmented, or absorbed into agencies
without a dedicated aging and disability focus, families could
face reduced coordination between programs, complicated service
navigation, inconsistent caregiver supports across states, and
decreased federal attention to caregiver needs.
Keeping ACL intact also supports a broader policy goal:
shifting care away from expensive institutional settings and
toward home- and community-based services (HCBS), which most
older adults prefer and which many family caregivers depend on
to keep loved ones safely at home.
Ultimately, maintaining ACL helps preserve the
infrastructure that allows sandwich caregivers to continue
caring for loved ones without carrying the entire burden alone.
It supports not only older adults and people with disabilities,
but also the economic and emotional stability of the families
who care for them every day.
Question:
How might paid, as opposed to unpaid, leave benefits change
the way caretakers balance their caregiving responsibilities,
especially if they are in the sandwich generation?
Response:
Paid leave benefits can significantly change how caregivers
- especially those in the sandwich generation - manage
caregiving responsibilities because they provide something many
families currently lack: time without immediate financial
sacrifice.
For sandwich caregivers balancing employment, child-
rearing, and care for aging parents or relatives, unpaid leave
often forces impossible choices between maintaining income and
health insurance vs caring for a loved one, meeting a child's
needs or protecting their own physical and mental health.
Paid family and medical leave can reduce those pressures by
allowing caregivers to temporarily step away from work while
still receiving partial or full income replacement. That
flexibility canmake caregiving more sustainable and reduce the
likelihood that caregivers will leave the workforce entirely.
The workforce impact of caregiving is already substantial.
Recent research from AARP and S&P Global found that:
67% of working caregivers report difficulty balancing
jobs and caregiving responsibilities,
27% reduced work hours or shifted from full-time to
part-time employment,
16% turned down promotions,
13% changed employers;
and 16% stopped working entirely for a period of time
because of caregiving demands.
The same research found that caregiving-related stress and
work disruption are especially severe for people providing high
levels of care while trying to maintain employment. For
sandwich-generation caregivers, paid leave may help them attend
medical appointments, coordinate hospital discharges and home
care, provide intensive care at home after a medical event, and
develop a sustainable long-term care plan for a loved one
without the added pressure of lost wages.
Compared with unpaid leave, paid leave can particularly
benefit middle- and lower-income families who cannot afford
extended periods without income. While higher-income workers
may sometimes absorb unpaid time away from work, many
caregivers live paycheck to paycheck and risk financial
instability, loss of housing, depletion of retirement accounts,
and loss of employment.
Paid leave may also improve workforce retention and
productivity. Many caregivers - especially women, who still
provide a disproportionate share of family caregiving - reduce
hours, miss advancement opportunities, or exit employment
altogether because balancing work and caregiving becomes
unmanageable. Employers often experience increased absenteeism,
reduced productivity, turnover, and burnout among employees
managing caregiving responsibilities without adequate support.
At the same time, family caregivers provide an enormous
economic benefit to the country. AARP estimates that family
caregivers now provide roughly $1 trillion annually in unpaid
care - labor equivalent to nearly 24 million full-time workers.
Without stronger caregiver supports, including paid leave, many
families absorb these costs privately through lost wages,
reduced retirement savings, and long-term financial insecurity.
There are also broader health and social impacts. Research
consistently shows that caregiving stress contributes to
increased alcohol and substance use, increased suicidal
ideation, sleep disruption, caregiver burnout. Notably,
research indicates that 85% of sandwich generation caregivers
have at least one adverse mental health impact.
In sandwich-generation households, paid leave can also
reduce intergenerational strain. Caregivers are often
simultaneously supporting children's educational, emotional,
and financial needs while managing aging relatives' medical and
functional needs. Paid leave gives families more flexibility to
respond to these overlapping responsibilities without forcing
one set of needs to compete directly against another.
Importantly, paid leave recognizes caregiving as a
legitimate societal and economic responsibility rather than a
purely private family issue. As the population ages and more
adults provide care across generations, policies that support
caregivers increasingly affect workforce participation,
economic stability, and the long-term sustainability of the
care system itself.
Question:
How are soaring prices for gas and other essentials
impacting families who are struggling to care for young
children and aging relatives?
Response:
Soaring prices for gas, food, housing, utilities,
prescription medications, and other essentials place
significant additional pressure on families who are already
balancing the costs of caring for both young children and aging
relatives, particularly those in the sandwich generation.
Caregiving is already financially demanding, even before
inflation is factored in. Families caring for children and
older adults often face overlapping expenses such as
transportation, childcare, prescription drugs, home heating and
utilities, groceries, home modifications, medical equipment,
and loss of wages due to time away from employment.
In rural communities, where healthcare providers and
services may be located long distances away, transportation
costs can become a major barrier to care access. Families may
postpone appointments, reduce social visits, or struggle to
maintain consistent caregiving routines because of travel
expenses.
At the same time, the cost of essentials continues to rise.
Families may find themselves making difficult tradeoffs between
paying for childcare, filling prescriptions, purchasing
groceries, paying utility bills, or being able to hire respite
or home care workers. These costs also intensify stress, as
many Older Americans are on very fixed incomes and are forced
to rely on caregivers for financial support.
Parents and caregivers may feel constant pressure trying to
meet the needs of multiple generations simultaneously while
watching household expenses increase faster than wages or
benefits.
These economic pressures also affect workforce
participation and productivity. Some caregivers take on
additional jobs, reduce hours to manage caregiving, or leave
employment altogether when care responsibilities and costs
become unmanageable. Employers may see increased absenteeism
and burnout among workers balancing caregiving and financial
stress.
Inflation can also drive increased demand for publicly
supported services such as nutrition, transportation, caregiver
respite, energy assistance, and Medicaid-funded services - all
of which are already strained by significant waitlists.
For sandwich-generation families, rising costs do not
affect only one part of life - they create cumulative pressure
across caregiving, employment, healthcare, transportation, and
household stability all at once. Policies that support
affordable caregiving services, transportation access, paid
leave, caregiver tax relief, and home- and community-based
services can help reduce some of that strain and allow families
to continue caring for loved ones safely and sustainably.
Senator Raphael Warnock
Question:
More than 47,000 older adults and individuals with
disabilities in Georgia rely on Medicaid Home and Community-
Based Services (HCBS) for personal care assistance, meal
delivery, and home health services. Family caregivers,
including the sandwich generation, also depend on HCBS for
critical respite care and training services. However, on July
4, 2025, President Trump signed the One Big Beautiful Bill Act
(OBBBA) into law, which cut nearly $1 trillion in Medicaid
funding for the next several years.
Ms. Preve, how will cuts to Medicaid from OBBBA affect
older Georgians' and sandwich caregivers' access to HCBS?
Response:
If Medicaid funding is reduced substantially, the impact on
HCBS for older Georgians and sandwich caregivers is usually
immediate and structural rather than gradual.
In Georgia, where tens of thousands of older adults and
people with disabilities rely on Medicaid HCBS for personal
care, meal delivery, case management, and home health supports,
the first pressure point is typically eligibility and access.
States facing reduced federal Medicaid funding often respond by
tightening waiver eligibility, limiting enrollment slots, or
creating waiting lists for HCBS programs. That means some
individuals who are already eligible may experience delayed
services, reduced hours of care, or loss of certain supportive
services like respite care.
For older adults, this can directly affect the ability to
remain safely at home. HCBS is often what prevents premature
nursing home placement. When those services are reduced,
families frequently must step in to fill the gap. That shifts
responsibility from paid professional support onto unpaid
family caregivers.
This creates a ripple effect across households. Sandwich
caregivers, who are already balancing children, work, and elder
care, often experience the greatest strain because they have
the least flexibility in time and resources. Even small
reductions in HCBS can force difficult tradeoffs between
employment, childcare, and elder care responsibilities.
There is also a broader system effect: when HCBS becomes
less available, demand increases for hospitals, emergency
departments, and institutional long-term care, which are far
more expensive settings. Families often experience this not as
a policy change, but as a crisis when home care suddenly
becomes unavailable or insufficient.
From a policy perspective, HCBS is one of the most
sensitive areas of Medicaid because it is optional for states
but essential for families. This means when budgets tighten, it
is often one of the first areas to face constraints, even
though it is also one of the most cost-effective ways to
support aging in place and reduce institutional care.
Question:
How will Georgians' access to these services compare to
individuals in states like New York that have expanded
Medicaid?
Response:
In general, Georgians' access to Home and Community-Based
Services (HCBS) is more constrained than in states like New
York that have more expansive Medicaid programs and a stronger
policy commitment to long-term services and supports in the
community.
In Georgia, Medicaid HCBS is largely structured through
waiver programs, which means services are typically capped with
enrollment limits, subject to waitlists, and are more narrowly
targeted to individuals meeting strict functional and financial
criteria. Even when someone qualifies clinically, services may
be dependent upon the availability of a waiver slot.
By contrast, states like New York have made more extensive
use of Medicaid expansion and long-term care investment in
community-based services. New York has a broader infrastructure
for HCBS delivery, including larger waiver capacity, stronger
integration with managed long-term care programs, and more
robust connections between Medicaid and aging-service systems.
For families, especially sandwich-generation caregivers,
these differences matter in day-to-day life. In Georgia,
limited HCBS availability can mean families more frequently
have to fill gaps themselves when formal services are not
available or are insufficient. That can increase unpaid
caregiving burdens, workforce disruption, and reliance on
informal support networks.
The broader policy distinction is that states with Medicaid
expansion and stronger HCBS investments tend to treat home-
based care as a core part of long-term care infrastructure,
while states with more constrained Medicaid structures often
rely more heavily on eligibility limits and capped waiver
programs to manage costs.
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