S.Hrg.119-447

1[Senate Hearing 119-447]2[From the U.S. Government Publishing Office]34                                                      S. Hrg. 119-44756                         CAUGHT IN THE MIDDLE:7                         SUPPORTING FAMILIES IN8                        THE SANDWICH GENERATION9=======================================================================1011                                HEARING1213                               BEFORE THE1415                       SPECIAL COMMITTEE ON AGING1617                          UNITED STATES SENATE1819                    ONE HUNDRED NINETEENTH CONGRESS2021                             SECOND SESSION2223                               __________2425                             WASHINGTON, DC2627                               __________2829                              MAY 13, 20263031                               __________3233                           Serial No. 119-293435         Printed for the use of the Special Committee on Aging3637[GRAPHIC NOT AVAILABLE IN TIFF FORMAT]3839        Available via the World Wide Web: http://www.govinfo.gov4041                               __________4243                  U.S. GOVERNMENT PUBLISHING OFFICE4464-010 PDF               WASHINGTON : 202645=======================================================================4647                       SPECIAL COMMITTEE ON AGING4849                     RICK SCOTT, Florida, Chairman5051DAVE McCORMICK, Pennsylvania         KIRSTEN E. GILLIBRAND, New York52JIM JUSTICE, West Virginia           ELIZABETH WARREN, Massachusetts53TOMMY TUBERVILLE, Alabama            MARK KELLY, Arizona54RON JOHNSON, Wisconsin               RAPHAEL WARNOCK, Georgia55ASHLEY MOODY, Florida                ANDY KIM, New Jersey56JON HUSTED, Ohio                     ANGELA ALSOBROOKS, Maryland5758                              ----------59                McKinley Lewis, Majority Staff Director60                Claire Descamps, Minority Staff Director6162                         C  O  N  T  E  N  T  S6364                              ----------6566                                                                   Page6768Opening Statement of Senator Rick Scott, Chairman................     169Opening Statement of Senator Kirsten E. Gillibrand, Ranking70  Member.........................................................     27172                           PANEL OF WITNESSES7374Karla Radka, CEO, Senior Resource Alliance, Orlando, Florida.....     575Meghan Maher, MPH, End-of-Life Doula & Sandwich Generation76  Caregiver, Windermere, Florida.................................     677Jason Resendez, President & CEO, National Alliance for78  Caregiving, Washington, D.C....................................     879Josh Protas, Chief Advocacy and Policy Officer, Meals on Wheels80  America, Arlington, Virginia...................................    1081Rebecca Preve, Executive Director, Association on Aging in New82  York, Albany, New York.........................................    118384                                APPENDIX85                      Prepared Witness Statements8687Karla Radka, CEO, Senior Resource Alliance, Orlando, Florida.....    3688Meghan Maher, MPH, End-of-Life Doula & Sandwich Generation89  Caregiver, Windermere, Florida.................................    4290Jason Resendez, President & CEO, National Alliance for91  Caregiving, Washington, D.C....................................    4992Josh Protas, Chief Advocacy and Policy Officer, Meals on Wheels93  America, Arlington, Virginia...................................    6094Rebecca Preve, Executive Director, Association on Aging in New95  York, Albany, New York.........................................    749697                        Questions for the Record9899Karla Radka, CEO, Senior Resource Alliance, Orlando, Florida.....    83100Meghan Maher, MPH, End-of-Life Doula & Sandwich Generation101  Caregiver, Windermere, Florida.................................    85102Jason Resendez, President & CEO, National Alliance for103  Caregiving, Washington, D.C....................................    88104Josh Protas, Chief Advocacy and Policy Officer, Meals on Wheels105  America, Arlington, Virginia...................................    95106Rebecca Preve, Executive Director, Association on Aging in New107  York, Albany, New York.........................................   101108109                       Statements for the Record110111AARP Statement...................................................   135112Alzheimer's Impact Movement Statement............................   145113Caring Across Generations Statement..............................   150114HANYS Statement..................................................   162115MomsRising Statement.............................................   164116NADSP Statement..................................................   169117SIFMA Statement..................................................   172118119                         CAUGHT IN THE MIDDLE:120                         SUPPORTING FAMILIES IN121                        THE SANDWICH GENERATION122123                              ----------124125                        Wednesday, May 13, 2026126127                                        U.S. Senate128                                 Special Committee on Aging129                                                    Washington, DC.130    The Committee met, pursuant to notice, at 3:31 p.m., Room131G50, Dirksen Senate Office Building, Hon. Rick Scott, Chairman132of the Committee, presiding.133    Present: Senator Scott, Moody, Gillibrand, and Kim.134135                  OPENING STATEMENT OF SENATOR136                      RICK SCOTT, CHAIRMAN137138    The Chairman. The U.S. Senate Special Committee on Aging139will now come to order. Right now, across the country, millions140of Americans are being squeezed from both sides. They are141raising children, working full-time, and at the same time142caring for an aging parent who needs them.143    I want to thank Senator Kim for talking--he talks about144this quite a bit. We call this group the Sandwich Generation,145and Washington has not done nearly enough to recognize them,146support them, or simply even say, we see you. The numbers are147striking. An estimated eleven million Americans are148simultaneously caring for a child and an older adult.149    Many are doing this while working full time, but too many150find that balance impossible. Most are exhausted, overwhelmed,151and doing it all quietly without complaint. One in five family152caregivers has reduced their work hours or left the workforce153entirely to provide care. That is not just personal sacrifice,154that is lost wages and lost retirement savings that compounds155over a lifetime. The estimated economic value of unpaid family156caregiving in this country sees $600 billion every year. These157are sons, daughters, and spouses who have stepped up because158they love someone. Love doesn't pay the bills.159    Right now, our tax code, our federal programs, and our160social infrastructure hasn't kept pace with what these families161actually need. That is why I am proud to be working on Multi-162Generational Home Caregiver Credit Act, which will provide163meaningful tax relief to family caregivers who are paying out164of pocket to care of--care of both the child and older adult165relative in their home.166    I am also proud to be a co-sponsor of the Alleviating167Barriers to Caregiving Act, which takes important steps to168provide support and flexibility to family caregivers navigating169the complexities of federal programs.170    This Committee is not a partisan committee, and these171aren't partisan issues. They are family issues. Let me say this172clearly, we cannot talk--cannot talk about supporting family173caregivers without talking about the Older Americans Act. The174community programs that family caregivers depend on every175single day flow through the OAA.176    We are talking about everything from meal delivery to177respite care and caregiver counseling. Reauthorization isn't an178option--it is overdue. I would like now to address the Sandwich179Generation caregivers here today and who join us virtually, we180hear you. We hear your problems, and we are going to try to do181something about it. What you are doing is very hard, is182beautiful and exhausting at the same time, and is one of the183most important things a person can do in their life.184    Today, we want to hear your stories, understand your185challenges, and make sure your voices are heard as part of the186record that moves this work forward. We cannot forget that our187focus must also remain on ensuring the resources meant to help188our caregivers--make sure they are protected against bad actors189who try to defraud our Government and them.190    People can't be working, doing the difficult work of caring191for their children and parents, to then get ripped off by192Government that lets their taxes go to fraudsters. Fraud193doesn't just steal resources from and damage the integrity of194good programs, it is bad for the American economy.195    First, we saw it in Minneapolis, but we've seen it around196the country. Last week we saw new reports from the Daily Wire197about massive caregiving fraud happening in Columbus, Ohio.198This country is almost $40 trillion in debt.199    We need accountability to ensure that every taxpayer dollar200meant for caregiving, meant for good people like the witnesses201we have before us today and the millions of Americans they202represent, is going to where it is supposed to go.203    We have to stop the fraud and hold the perpetrators204accountable. I want to thank all of our witnesses for being205here today and for the work they do on behalf of caregivers and206the families they support.207    What is going to happen is we have three votes, so the208Ranking Member and I are going to have to take turns in the209beginning to chair this and go and we will be right back. Now210let me turn it over to the Ranking Member Gillibrand for her211opening comments.212213                 OPENING STATEMENT OF SENATOR214             KIRSTEN E. GILLIBRAND, RANKING MEMBER215216    Senator Gillibrand. Thank you, Chairman Scott, for today's217hearing. Sandwich Generation caregivers are under extreme218stress to care for their children and aging loved ones at the219same time.220    Today's hearing will shine a light on the immense financial221and personal stress that unpaid caregivers are experiencing.222Sandwich caregivers oftentimes step back from their careers--223step back from their career to meet the caregiving demands that224they have. My bill, the Social Security Caregiver Credit Act,225seeks to protect the retirement security of family caregivers.226    That stress that Sandwich Generation caregivers experience227will worsen as states grapple with the impact of the Big228Beautiful Bill, which already has many states contemplating229changes to the home and community-based services that help230older Americans and people with disabilities live independently231in their home. In December, this Committee solicited statements232from folks about what these services meant to them.233    Seniors and Americans with disabilities from all 50 states234sent us more than 1,000 pages worth of statements just to show235how critical these services are. One New Yorker's testimony236sums up why these programs work. She told me that she supports237community living because it "creates a sense of belonging and238support that strengthens everyone involved."239    When the Trump Administration cuts funding for these240programs like home and community-based services, they are not241just striking budget line items. They are gutting the support242networks that help American families stay afloat, seniors age243with dignity, and people with disabilities thrive.244    Many of these statements we received are from the Sandwich245Generation caregivers. Home and community-based services, along246with Older Americans Act programs, are lifelines to family247caregivers.248    There is no better one to speak about this experience than249someone who lives it every day. With that, I am very proud to250yield the rest of my time to Senator Andy Kim.251    Senator Kim. Thank you, Ranking Member Gillibrand. Thank252you, Chairman and Ranking Member for holding this hearing and253working with me on these incredibly important issues.254    This conversation hits especially close to home for me. In255April 2024, my father lost his ability to walk after an256accident. It was at that time that we also realized that he had257a rapidly devolving cognition.258    Soon after, my father was formally diagnosed with259Alzheimer's, and I stepped into this role as being a caregiver.260This is on top of me being a father to two little boys, on top261being a U.S. Senator. From that point onwards, I joined the262Sandwich Generation, a community made up of millions already263that are--and we know that is only going to grow larger.264    The challenges of the Sandwich Generation touch all of our265lives, but too often go overlooked or unnoticed. I bet we all266know somebody managing the care of two or more generations of267loved ones, holding down a job, keeping their family afloat,268while being squeezed on both ends, often feeling isolated and269navigating these challenges alone. Estimates show that there270are over 11 million Americans in this role.271    By 2030, baby boomers will be over the age of 65, and the272demand on family caregivers already stretched thin will273intensify, so why is the Committee on Aging talking about the274Sandwich Generation? It is because the care that my aging275father gets now is inherently tied to my ability to navigate,276provide, and help pay for it.277    We cannot talk about the care for our seniors without278considering the families and the caregivers that support them.279I cannot be here at this hearing right now without having a280caregiver there with my father right now to ensure his health.281This Committee has a unique ability to help caregivers be seen,282heard, and understood. For two long Sandwich Generation283caregivers have fallen through the cracks of our policy284frameworks.285    Part of the problem is that we are in the dark about how286many truly exist, because national data does not ask about287multi-generational caregiving. You cannot build policy on a288foundation you cannot see. That is why today I introduced289bicameral legislation to add a dedicated question on multi-290generational caregiving to national surveys so we can finally291give the Sandwich Generation a permanent place in our national292data.293    Understanding starts with listening. That is why I wanted294this hearing today, to spotlight stories too often unheard.295Now, I want to introduce Kathy Lola, who is part of the296Sandwich Generation in New Jersey. It is the stories like hers297that we hear from now on that can best stand up for our298caregivers. I hope we can show the video quickly.299    [Video playing.]300    Ms. Lola. Chairman Scott, Ranking Member Gillibrand, and301distinguished members of the Aging Committee, thank you for302having me here today to speak. My name is Kathy Lola, and I am303the mother of a 32-year-old with significant intellectual and304developmental disabilities who I continue to care for at home.305    Several years ago, my dad was diagnosed with both306Alzheimer's and Parkinson's disease, and I became an important307part of his caregiving team. At that time, I also became a308Sandwich Generation caregiver. Many Sandwich Generation309caregivers don't even recognize our role as caregivers and are310therefore unaware that support services may be available.311    From my perspective, as challenging as it was to care for312multiple family members, I was even more overwhelmed by the313complexity of the systems I had to navigate as I attempted to314find services and support for myself and my parents. What would315have made this process easier for us is having someone to guide316us through these confusing and convoluted systems.317    Having a central hub of supports and services, as well as a318navigator to assist with the processes, would have made our319journey much easier. Sandwich Generation caregivers deserve320more help and a better and simpler way of securing support for321ourselves and those we are caring for.322    [Video ends.]323    Senator Kim. Kathy is absolutely right. The system that324caregivers navigate are complex and confusing, and I have felt325that myself. I am so grateful to people like Kathy who are326willing to share their story and be a voice to the challenges327that millions are facing. What we hear today needs to be the328foundation of continued action and progress toward a solution329and relief our caregivers and our families deserve. Thank you,330Chairman, and I yield back.331    The Chairman. Thank you, Senator Kim. Thank you, Ranking332Member. Our first witness is Karla Radka, President and CEO of333the Senior Resource Alliance, the Area Agency on Aging serving334Central Florida.335    Ms. Radka leads an organization at the Center of the336Caregiving Support Network in one of the fastest growing337regions in the country. She knows firsthand what family338caregivers are asking for, where the gaps are, and what it339takes to deliver real services to real people in the340communities. Please begin your testimony.341342             STATEMENT OF KARLA RADKA, CEO, SENIOR343              RESOURCE ALLIANCE, ORLANDO, FLORIDA344345    Ms. Radka. Chairman Scott, Ranking Member Gillibrand, and346distinguished members of the committee, thank you for the347opportunity to be here today. As an Area Agency on Aging (AAA),348we serve older adults, caregivers, and families every day who349are navigating one of the most pressing and personal challenges350facing the nation-the caregiving crisis.351    In 1973, the AAAs were formally established in the Older352Americans Act, OAA, as the on the ground organizations charged353with helping vulnerable older adults live with independence and354dignity in their homes and communities. For more than 50 years,355the AAAs have served as local leaders in aging by planning,356developing, funding, and implementing local systems of357coordinating aging and other home and community-based services.358    While the National Family Caregiver Support Program was not359added to the Older Americans Act until 2000 as Title III-E,360AAAs have supported families and caregivers of older adults for361decades. At Senior Resource Alliance, we use this essential362funding to offer family caregivers a number of critical363services to shore up their own efforts including information,364resources, individual counseling, respite care, so they can365take care of their duties and assist caregivers in lightening366the road as they provide quality care for their loved ones.367    As my and other AAAs across the country continue to support368family caregivers, there one population that continues to stand369out, the Sandwich Generation. There are millions of Americans370who are caring for aging parents while raising children,371working full time, and trying to remain financially stable.372This is not an abstract policy discussion. There are real373people such as teachers, nurses, small business owners that are374doing everything right and still struggling to hold it375together.376    The average Sandwich Generation caregiver for a Medicare377recipient is 44 years old, significantly younger than378caregivers without children under the age of 18, which average379is 61 years old. For Sandwich Generation caregivers who are380employed, many report reducing their work hours as they take on381dual responsibilities caring for both older adults and young382children. Reducing hours and workforce for a caregiver also383reduce their income, which put them in a struggle.384    At our organization, this is a very real challenge we face385every day. I would like to share with you the story of Grace.386Grace is a mother of three children and also the sole caregiver387of her father who is living with dementia.388    She wakes multiple times during the night to manage her389father's medications and schedule medical appointments. The390reality of having to juggle life and workforce and be on the391workplace, and also caring for children, is actually a very392heavy burden that she has to live in. She actually shared with393us that she is failing at everything, at her work and at home.394    However, our organization has been able to support her with395referrals through our provider network and to provide respite396care for her. She has been to manage this situation in a very397effective way. The reality is that many of our caregivers are398one paycheck away from crisis. They are not looking for399handouts. They are looking for flexibility. They are looking400for that opportunity to be able to have support and to provide401quality care for their loved ones, our older Americans.402    In terms of what the Congress can do to really support403caregivers, especially the Sandwich Generation, well, the404approval, the authorization of the Older Americans Act and the405program Title III-E, which is the program that provides that406respite care that is so necessary to be able to continue to407provide services. Also, other bills that are in Congress that408are part of my written testimony.409    Caregiving does not happen in silos; it is a family affair.410Supporting this ecosystem of older adults, caregivers, and411multigenerational families working together is both sound412policy and good business.413    It really is good for the workforce, it is good for414families, and it is to continue to help seniors, elder415Americans to age in place in the communities they love, where416they volunteer, where they worship, where they have work. It is417important.418    The Sandwich Generation is holding on two other419generations, so they don't have to do it alone. Thank you for420allowing me to present in front of all of you and to carry the421voice of the families that we serve every day. Thank you.422    The Chairman. Thank you, Karla. Next, I am honored to423introduce Meg Maher, who also joins us from her home State of424Florida. She is here today, not as a policy expert or program425administrator, but as a caregiver.426    She has lived the Sandwich Generation experience, balancing427the demands of raising a family while caring for an aging loved428one, and she has agreed to share that story with us here today.429It takes courage. Voices like hers are exactly why we hold430hearings like this in Washington, DC. We need to hear directly431from the people these policies are meant to serve. Thank you432for being here today, and please begin your testimony.433434                STATEMENT OF MEGHAN MAHER, MPH,435436                  END-OF-LIFE DOULA & SANDWICH437438           GENERATION CAREGIVER, WINDERMERE, FLORIDA439440    Ms. Maher. Chairman Scott, Ranking Member Gillibrand, and441members of the Committee, thank you for the opportunity to442speak today, and for your leadership in advancing legislation443that recognizes and supports family caregivers.444    My name is Meghan Maher. I live in Florida, and I am a445sandwich caregiver. I am raising two school aged children while446also providing ongoing support to my father and his wife. I am447also an only child. There is no one to share this role with.448Whatever needs to happen, I am the one. I care for my family449because I love them. That love is not a burden. It is the450reason.451    Everything I share today comes from that. My caregiving452began in 2013, seven weeks after my oldest son was born, when453my mother was diagnosed with stage four breast cancer. I have454never known motherhood without also being a caregiver. A few455years later, as my mother's health declined, my parents moved456into our home.457    I had a toddler and a baby. I was providing hands-on care458for my mother while raising young children. That is what459sandwich caregiving can look like at its most literal, a dying460parent in one room, a baby in another, and you in the middle.461My mother died in 2017. Three months later, my father became462critically ill. There was no pause. Caregiving does not observe463a mourning period.464    My father survived that crisis, but my role as his465caregiver never truly ended. Today, he is in the early stages466of mild cognitive impairment. The type of support I provide has467changed, but it has not lessened. I attend medical, legal, and468financial appointments in person and on the phone. I track469changes, manage communication, and help navigate decisions. I470support him and his wife across state lines because they split471their time between Florida and South Carolina.472    I am the thread of continuity in his care and all of that473exists alongside raising my children who need a present mother.474The hardest part is not any one responsibility. It is that475every role matters. There is no version of this where everyone476gets enough of me. Many of--much of this work is invisible. It477is coordination, advocacy, communication, problem solving,478tasks, and holding the full picture. It runs in the background479of every day, and it is unpredictable. Care needs don't follow480a schedule.481    Even when resources are available, care is not necessarily482accessible. You cannot always find trusted support on short483notice. The barrier is not only cost, it is logistical,484administrative, and ongoing. Families and care providers are485both doing the best they can within a system that was not486designed for how caregiving actually unfolds. Caregiving has487also reshaped my professional life.488    I am self-employed in large part because traditional489employment could not accommodate the unpredictability of being490a sandwich caregiver. The flexibility of self-employment comes491with real, financial, and professional tradeoffs. There is a492cost to carrying all of this, and it lives in the body. It493affects sleep, health, and well-being. It means deferring your494own medical appointments because there is often something more495urgent. The loneliness of it also goes unspoken.496    There is particular kind of isolation that comes from being497the person who holds the full picture. Even when you are not498physically alone, you are the one holding it all the time. My499experience is not unique. That is exactly the problem. There500are millions of sandwich caregivers across the country, largely501without systems that recognize or support the full scope of502what they are carrying.503    Families like mine do this because we love each other, but504love is not a policy. Caregivers need systems that reflect the505reality of what this requires, flexible support, accessible506care, and infrastructure that accounts for the full scope of507this role. Thank you.508    The Chairman. Thank you, Ms. Maher. Now, I would like to509introduce Jason Resendez, President and CEO of the National510Alliance for Caregiving, the Nation's largest leading non-511profit research and advocacy organization focused exclusively512on family caregiving.513    He brings a national perspective to the caregiving crisis514backed by research, data, and years of experience working515across the policy landscape to advance support for family516caregivers of all ages and backgrounds. Please begin your517testimony.518519         STATEMENT OF JASON RESENDEZ, PRESIDENT & CEO,520       NATIONAL ALLIANCE FOR CAREGIVING, WASHINGTON, D.C.521522    Mr. Resendez. Chairman Scott, Ranking Member Gillibrand,523and members of the Committee, thank you for the opportunity to524speak today about the crisis facing our Nation's Sandwich525Generation caregivers, the millions of Americans caring for526children and adult at the same time, often invisibly and almost527always without enough support.528    This is an issue that is deeply personal to me, and I know529for many of you. I grew up watching my mom balance a full-time530job while raising three kids and caring for my grandmother531through multiple chronic conditions. It was tough work, and she532did it out of a deep sense of love and commitment to her533family, but also out of a necessity.534    There were no alternatives in our small South Texas town.535For as long as I can remember, my mom dreamed of becoming an536accountant, but she was never able to finish college. Her dream537took a backseat to her caregiving responsibilities and the cost538wasn't just a degree. It was a lifetime of lower wages, fewer539opportunities, and a smaller retirement because the years she540spent caring for her mother didn't count toward Social Security541the way that paid work does and my family's story isn't unique.542    According to research from the National Alliance for543Caregiving, which I lead in AARP, there are 63 million adults,544nearly one in four Americans, now providing ongoing demanding545care to a family member or friend with a serious illness or546disability. That is a nearly 50 percent increase in just a547decade.548    Sixteen million are Sandwich Generation caregivers, raising549a child or a grandchild at home while caring for an adult loved550one. That is about one in three family caregivers in the551Sandwich Generation. The typical sandwich caregiver is a woman552in her early 40's, more than a decade younger than the average553caregiver, juggling three roles at the same time, a job, her554kids, and a loved one who needs care.555    This work is not occasional. Sandwich caregivers provide an556average of 22 hours of care each week, a part-time job on top557of their parenting. More than 60 percent perform medical or558nursing tasks at home, managing medications, dressing wounds,559changing feeding tubes, and four in ten do so without any prior560training. These are ordinary Americans providing extraordinary561care, and the economic toll is severe. Fifty-eight percent of562sandwich caregivers experience at least one negative financial563impact, like taking on debt, depleting savings, losing income,564or leaving the workforce entirely.565    These are people in the prime earning years, and the costs566compound across decades into smaller retirements and tighter567household budgets. The personal toll runs alongside the568financial. One in three sandwich caregivers reports high569emotional stress, and many say caregiving has worsened their570own health. Most did not choose this role, it found them.571    The overwhelming majority tell us they need more help to572make this care work. Make no mistake, this is work. AARP573estimates that family caregivers now provide more than $1574trillion worth of care each year. They are the invisible575backbone of our economy and our long-term care system. Family576caregivers are clear about what would make a difference. They577need meaningful financial relief to offset the rising out of578pocket cost of care.579    They need a retirement system that recognizes caregiving as580the work it is. They want paid family and medical leave to help581balance the responsibility of caring for a loved one while582working. They need easier access to the fragmented maze of583benefits and supports that so many struggle on top of the hard584work of care to access. There is legislation before Congress585that responds directly to each of these needs.586    The Multi-Generational Home Caregiver Credit Act introduced587by Chairman Scott and Senator Welch would provide tax relief to588families providing care across generations. The Social Security589Caregivers Credit Act, championed by Ranking Member Gillibrand590and Senator Murphy, would credit caregivers up to five years591toward their Social Security benefits.592    The Alleviating Barriers for Caregivers Act from Senators593Markey and Capito would identify ways to reduce the594administrative burden on family caregivers as they try to595access programs like Medicare or Medicaid. The Senior Act from596Chairman Scott and Senator Smith would address caregiver597loneliness as the public health concern that it is.598    The Family Act, championed by ranking member Gillibrand,599would establish our Nation's first-ever paid family and medical600leave program. Paired with reauthorization and robust funding601for the Older Americans Act, these bills would bring us closer602to a society that truly values and invests in family603caregivers. Senators, my mom gave up her degree, her career,604and her financial future to care for the woman who raised her.605    Millions of Americans are doing the exact same thing right606now across this country, and they deserve better. We have the607data. We have solutions. We have 63 million reasons to act.608What we need now is the leadership that matches the sacrifices609of our Nation's Sandwich Generation caregivers. Thank you, and610I look forward to your questions.611    The Chairman. Thank you, Mr. Resendez. Now, I would like to612introduce Josh Protas, Chief Advocacy and Policy Officer at613Meals on Wheels America, the national leadership organization614supporting the network of more than 5,000 community based615senior nutrition programs operating in communities across the616country.617    He understands better than almost anyone what it means when618older adults can stay safely in their homes, and what is lost619when the programs that support them go underfunded or620unauthorized.621    That connection between community services, federal policy,622and family caregivers is at the heart of what we are exploring623today. Please begin your testimony.624625            STATEMENT OF JOSH PROTAS, CHIEF ADVOCACY626627              AND POLICY OFFICER, MEALS ON WHEELS628629                  AMERICA, ARLINGTON, VIRGINIA630631    Mr. Protas. Good afternoon Chairman Scott, Ranking Member632Gillibrand, and members of the Committee. Thank you for the633opportunity to testify at this hearing. My name is Josh Protas,634and I am proud to serve as the Chief Advocacy and Policy635Officer for Meals on Wheels America, here on behalf of a636nationwide network of more than 5,000 community based senior637nutrition programs serving older adults in nearly every638community. For millions of families Meals on Wheels starts with639a nutritious meal, but it offers so much more.640    It is a knock on the door, a safety check, a moment of641human connection, or a referral to other supportive services642and peace of mind for an adult daughter or son who is trying to643work, raise children, and care for an aging parent all at the644same time. The underpinning of all of this is the Older645Americans Act.646    The Meals on Wheels service model sets the gold standard647for a successful public-private partnership, working to reduce648nutritional risk and social isolation while saving taxpayer649dollars by ensuring that older adults live safer and longer in650their own homes, and keeping them out of costly health care and651long-term care settings.652    We can provide Meals on Wheels services to a vulnerable653older adult for an entire year for roughly the same cost as one654day in the hospital or twelve days in a nursing home but655federal funding has not kept pace with the increasing need656among our Nation's rapidly growing senior population and rising657costs for food, fuel, and program operations.658    One in three meals on wheels providers report keeping a659waitlist with seniors waiting an average of four months for the660care they need and deserve. Too many families are left to661absorb the consequences on their own. That challenge is only662growing with 12,000 people in America turning 60 years old663every day and more older adults struggling to afford their664basic needs.665    The number of seniors with low or very low food security666quadrupled between 1999 and 2023. Over the same period, the667buying power of federal funding for the OAA nutrition program668actually decreased, and the program was serving meals to669roughly the same number of seniors in 2024 as it did 25 years670earlier in 1999.671    This results in escalating unmet need. MAG Aging and Family672Services in Orem, Utah shared that, "Due to lack of funding, we673have had to resort to removing clients who have in-home support674from family members. Our waiting list continues to grow. This675has resulted in a lot of panicked seniors and caregivers who676are heavily reliant on our program." When community programs677cannot keep up, the burden shifts onto family caregivers who678are already stretched thin. That can mean more missed work,679more stress, more out of pocket costs, and more fear that a680loved one is going without food, safety, or connection.681    For these families, Meals on Wheels can bridge the gap682between what they want to provide and what they can683realistically do on their own. This is especially important for684caregivers who live at a distance and cannot be present every685day. This matters because the older adults served by Meals on686Wheels are often the most vulnerable in our communities. Many687live with multiple chronic conditions, limited mobility,688cognitive decline, disability, or social isolation.689    Without dependable support, they face greater risk of690malnutrition, falls, hospitalization, and premature nursing691home placements. The relatively small upfront federal692investment to provide Meals on Wheels services is smart fiscal693policy because it prevents more costly interventions694downstream. Plus, when we support seniors being able to live695independently at home, we reduce the strain on already696overburdened hospitals and nursing homes.697    When Satish reached out to Meals on Wheels, etcetera in698Sanford, Florida for help, he couldn't stand for long and was699dealing with diabetes, memory loss, and repeated falls that700made cooking dangerous. Some days, he would just go to bed701hungry. Satish had to be placed on a waitlist with more than702400 other seniors due to funding constraints. He waited three703long years for support.704    While he waited, his energy dwindled, and his world shrank.705When a meal slot finally opened up, his life changed overnight,706and he regained his strength, independence, and a sense of707connection. He said, "Meals on Wheels is lifesaving. For people708like me, it means everything." For caregivers, this kind of709support can be the difference between staying in the workforce710and cutting back hours, between stability and crisis, between711constant fear and peace of mind.712    Meals on Wheels cannot solve every challenge that families713caught in the middle face, but it can remove some of the daily714pressures that push families to the breaking point. During his715historic visit with Meals on Wheels in Central Maryland last716year, Secretary Kennedy noted the importance of strong support717so the Meals on Wheels programs can reach all in need. "History718will judge the humanity of our civilization by how we care for719our elderly," he said. "Meals on Wheels does not just provide720nutrition for the malnourished. It combats the epidemic of721loneliness through daily acts of care and compassion. President722Trump has asked us at HHS to continue supporting Meals on723Wheels so that no American in their twilight years feels724forgotten." Vulnerable seniors, their caregivers, and the Meals725on Wheels providers that serve them are still waiting to be726prioritized.727    It is time to end the wait. I urge you to prioritize728increased funding for Meals on Wheels and other Older Americans729Act services as essential supports for both seniors and their730family caregivers. Thank you again for holding this hearing on731this important topic and for your bipartisan leadership on732behalf of older Americans and their families.733734        STATEMENT OF REBECCA PREVE, EXECUTIVE DIRECTOR,735       ASSOCIATION ON AGING IN NEW YORK, ALBANY, NEW YORK736737    Ms. Preve. Thank you to Chairman Scott, Ranking Member738Gillibrand, and Senator Kim for allowing us to testify at this739hearing today. I am with the Association on Aging in New York,740and I have the distinct honor to represent the 59 Area Agencies741on Aging in the State of New York that do incredible work, day742in and day out, not only for older New Yorkers, but also for743family caregivers.744    I want to start the conversation by framing it, because I745think ageism is something that we see throughout not only746legislative priorities, but also funding. I want to highlight747that supporting family caregivers and older Americans should be748an expectation, not an afterthought.749    Older Americans contribute one-third of the overall750economic impact and output in this country and are worth over751$9 trillion annually. From an equity perspective, they deserve752to be supported, as do their caregivers. Family caregivers, you753have heard from my colleagues today, are the backbone of the754economy and the Nation, and they are largely invisible in755policy and funding decisions.756    Across the United States, more than 60 million caregivers757provide essential support to loved ones with a chronic illness,758a disability, or age related needs. Nearly one in four adults759is a caregiver, and most provide this without any form of760compensation. These caregivers are not just helping families.761    They are sustaining our entire health care system. In New762York alone, more than 4.1 million caregivers provide763uncompensated care to the tune of $58 billion per year in764economic activity. Nationally unpaid caregivers exceed $1765trillion to this country and yet we are failing to support766those Sandwich Generation caregivers.767    At the same time our demand is rapidly rising--we now have768between 75 and 80 million adults over the age of 60. That769number continues to grow. Many caregivers are part of the770Sandwich Generation, balancing care for aging relatives while771raising children including those with disabilities who live in772an entirely different ecosystem than aging services do.773    One in three family caregivers are Sandwich Generation and774they face the highest incidence of documented mental health and775workforce impacts. These individuals face intense competing776demands on their time, their finances, and their overall well-777being. Research indicates that 85 percent of Sandwich778Generation caregivers report at least one adverse mental health779impact.780    Serious suicidal ideation exists in 50 percent of Sandwich781Generation caregivers in the past 30-day period, which is eight782times the odds of the normal adult population. The strain on783caregivers is only increasing as our long-term care system784undergoes significant change.785    Since 2020, the U.S. has lost more than 750 skilled nursing786facilities due to workforce shortages, rising cost, and787financial instability. When these facilities close, the need788for care does not disappear. It is transitioned to community-789based settings and mostly on family caregivers.790    At the same time, H.R. 1 and the reduction in Medicaid791funds, new eligibility requirements and assessments will make792access to home and community-based services harder to obtain793and further push individuals to Area Agencies on Aging that794already have enormous waitlists. Despite these stark realities,795federal investment in caregivers has not kept pace. Under the796Older Americans Act, the National Family Caregiver Support797Program receives only about $200 million annually.798    That is less than 10 percent of all OAA funding. This is a799small fraction compared to the economic value caregivers800provide every year, and the consequences of the imbalance are801significant. For working caregivers, responsibilities often802mean reducing hours, taking unpaid leave, or leaving the803workforce entirely, leading to lost wages, reduced retirement804savings, and long-term financial insecurity.805    Additionally, caregivers spend more than the general public806out of their own pockets each year, almost $10,000 in807additional funds. We have over four million workers that have808left for caregiving roles since the COVID-19 pandemic at an809economic cost of $44 billion in lost wages. I want to talk for810a moment about Area Agencies on Aging and why they contribute811to the cost savings to not only caregivers, but the Medicaid812system.813    Our average client statewide, if you looked at all our814programs and services, is an 83 year old low income female who815lives alone, has four to ten chronic conditions like diabetes816and congestive heart failure, needs assistance with activities817of daily living, like bathing, toileting, and dressing, and we818are serving them in their homes and communities on average for819seven years for less than $10,000 a piece.820    If that individual was assessed for nursing home or821assisted living placement, they would qualify to the tune of822$150,000 on the Medicaid scorecard. Again, I want to highlight823New York, and I really want to comment on our state unit on824aging and the Director of NYSOFA, Greg Olsen, who is leading825the Nation in innovations.826    What we are asked here today is to come up with solutions827to some of these problems and New York has done exactly that.828We first looked at how we could support caregivers and taking a829real temperature of what was happening with caregivers in the830State of New York. Under Commissioner Olsen's leadership, the831state went through a comprehensive working caregiver initiative832where they not only surveyed state employees, but they also833surveyed private sector employees.834    They found exactly what we have talked about today, that835people really need to be supportive because they are either836leaving the workforce entirely, they are reducing their hours,837they are having mental health adverse effects. We came up with838the solution. We know that workers need to be supported and839have access to services, or these things happen to them.840    NYSOFA's response was to provide free for any New Yorker841under the New York Caregiver Portal an evidence based online842platform known as Trualta, which is supporting thousands of843caregivers across the State of New York and has actually booked844about $11 million in savings from a delay in skilled nursing845facility placements and caregiver support in the community that846reduced emergency department visits.847    We also have partnered with Any Care Counts New York, which848is using the caregiver intensity index to quickly within two849minutes assess the caregiver and determine are they in the red,850yellow, or green--which, do they have a mental health impact,851are they doing okay, are they not? Then you are instantly852linked to resources that assist you, including localized853resources for the State of New York but also in every state in854the Nation.855    State innovation alone cannot meet the scale of this856challenge though. Federal leadership is essential. We are857respectfully urging Congress to take the following actions.858Increase funding for the National Family Caregiver Support859Program and all of the Older Americans Act programs that have860been spoken about today.861    Provide direct financial relief to caregivers through tax862credits, stipends, and expanded Medicaid support. Strengthen863workplace policies, including paid family and medical leave and864flexible work arrangements to help caregivers remain in the865workforce. Ensure caregivers have access to training. Maintain866the independence of the Administration for community living as867a federal authority dedicated to aging and disability services,868and reauthorize the Older Americans Act, and know that family869caregivers are critical, yet often invisible part of our870national healthcare infrastructure. They allow millions of871older adults and individuals with disabilities to remain in872their homes and communities, while saving the system billions873of dollars each year.874    It is time to move beyond recognizing caregivers as heroes875and instead provide the policies, funding, and support they876need to continue this essential work. Thank you.877    Senator Gillibrand. I would now like to call on Senator Kim878for his questions.879    Senator Kim. Thank you, Ranking Member. Thank you all for880your comments here today. Ms. Maher, I would like to start with881you. Just first of all, thank you for sharing and when you882talked about just the isolation and the loneliness that you883feel, I feel it too. I know many others do as well.884    I hope by hearing your story, hearing my story, hearing885what we are talking about here today, I hope many that feel886invisible, feel lonely, recognize that, no, that there is many887going through this together.888    As you said, you know, look, many of us are ready to step889up for our loved ones and try to help. You know, we are not890asking for the moon. The way I sort of say is like, but it891still doesn't have to be this hard, you know. I think one thing892that stood out in your comments that I hear from so many others893is many of enter the Sandwich Generation--first of all, I894didn't even fully understand that term and then someone came up895to me was like, oh, you are part of the Sandwich Generation. I896am like, I guess.897    Like, you know, you are just so far deep in it, you don't898even time to step back sometimes and even assess that but what899you said I think stood out, that I hear from so many others, is900that many of us enter this designation of Sandwich Generation901through crisis.902    You know, I had this circumstance where my father is903literally going through surgery. You know, we are finding all904sorts of other problems simultaneously. Now all of a sudden, I905am being asked to make decisions about his health. I am being906asked to understand, you know, his Medicare levels.907    I am trying to understand this financial security. When I--908you know, I was not, you know, somebody that had, you know,909attorney privileges or had any other access. I think just910initially, I was just overwhelmed.911    I guess I just wanted to ask you to kind of talk through912this, like the complexity of navigating, you know, Medicare,913health care, you know, the financial systems and other things914to be able to assess. Can you talk a little bit about how that915affected you?916    Ms. Maher. Absolutely. Much of what you said resonates with917me. Certainly with my mom, I kind of call it, I didn't know918what I didn't know. As far as supports and services that might919be available through federal or community programs, I had no920idea.921    When moving through health care providers, the hospital922systems, discharge planners, we were never told about anything923that might be available for families like us. I didn't know924what was there.925    What you spoke about where you are kind of initiated in--at926a critical moment and suddenly you are the health care927surrogate, and you are making decisions. I did not have to do928that for my mom, and my dad and I have had many conversations929and planning meetings ahead of time about that, but I know that930is not the case with--for many families. They are kind of931launched into this having no idea maybe what their older loved932one even wants. Maybe their older loved one doesn't even have933advanced directives.934    Maybe they haven't even made that decision for themselves,935and then they are left kind of guessing.936    Senator Kim. Yes. No, I think that that planning and trying937to have that opportunity is something I am trying to help938engage, but also who we turn to, you know, for that and Mr.939Resendez, I wanted to turn to you.940    You know, there was a quote that stood out to me when I was941reading about the, you know, the start of Medicare for942instance. You know, President Johnson and Truman did this press943conference together.944    There is a line I wanted to read to you. Says, "no longer945will illness crush and destroy the savings that they have so946carefully put away over a lifetime so that they might enjoy947dignity in their later years. No longer will young families see948their own incomes and their own hopes eaten away simply because949they are carrying out their deep moral obligations to their950parents and to their uncles and their aunts." I wanted to ask951you, do you feel like this original promise is being born out952in full right now, or do we still have work to do?953    Mr. Resendez. We have--we have come a long way, I will say954that, in terms of the role of Medicare's recognition of the955importance of supporting the health of older adults across the956country. In terms of the way that we are investing in the957health older adults.958    We see that borne out by the longevity boom that we are959experiencing in this country but yet we have a tremendous road960still ahead. We are living longer, but we are living longer in961poorer health, and because of that, the demands on family962caregivers have only increased. One area where Medicare has not963kept up is in recognizing the role that family caregivers play964in supporting Medicare beneficiaries.965    In terms of providing direct support for family caregivers,966navigating what is complex care, right. Changing wound967dressings. The feeding tubes, PICC lines. These are things that968have historically taken place in acute care settings, certainly969in the time when the program was established. It is now more970and more happening in the home and yet family caregivers971receive very little support and training.972    That is starting to change in the Medicare program, and I973think that is the next frontier as policymakers start to think974about modernizing Medicare to rise to the moment that we are in975for family caregivers.976    Senator Kim. No, thank you so much. I agree wholeheartedly.977We have made great progress and I read that quote not to978necessarily say, you know, we have not made more progress, but979to try to recommit ourselves at this point to try and to follow980through to that original goal. That we can have that sense of981stability and security at a time when we are living longer,982that we are finding ourselves sometimes in poor health, but we983are also seeing health care expenses significantly higher than984where we saw before. Families spread out further and other985challenges. One last thing I wanted to just ask Mr. Resendez is986that, you know, I recently just introduced, as I said, this987legislation today called the Multi-generational Caregiving Data988Act, mostly because I am just trying to, again, make sure that989we are being seen, that we understand, and we can make real990rational decisions based off of that data. I wanted just to ask991you what you think--you know, whether or not you think that the992lack of this comprehensive data so far has hurt our ability to993fully understand what is the effects of multi-generational994caregiving in terms of the limits on our abilities to fully995understanding what these families need, and how this data might996be able to help policymakers, help us identify some of the gaps997that are out there. You know, we hear the anecdotal stories998that are so powerful, but what is it that the data can do to be999able to help us drive toward solutions going forward?1000    Mr. Resendez. Absolutely. Thank you, Senator Kim, for your1001leadership and advancing that piece of legislation. Data is1002absolutely critical to helping us understand the full scope of1003the challenges that family caregivers face, particularly1004sandwich caregivers. Having better data gives us the ability to1005make better decisions to understand how caregiving changes1006state to state, federal program to federal program.1007    Data absolutely can help drive change and help drive1008accountability, right. We are not going to change what we don't1009measure. By having stronger data systems in place, we can hold1010ourselves accountable.1011    We can hold policymakers accountable. We can hold states1012accountable for the progress they are making in responding to1013the data that starts to come in because of these new tools and1014measurement opportunities.1015    Senator Kim. Well, thank you so much. Chairman, again,1016thank for holding this hearing. Working with me on these--you1017know, we have some real ideas. You have ideas. The Ranking1018Member, myself, and others.1019    You know, I hope that this Committee can really try to1020accelerate that. The hearing is really wonderful, but what our1021caregivers, what the Sandwich Generation needs is real1022solutions, and I am grateful that you are willing to be part of1023the effort to be able to deliver that. Thank you, Chairman1024    The Chairman. Well, Senator Kim, thank you for caring about1025this, and thank you for your focus on this. Ms. Radka, the1026Senior Act includes provisions specifically designed to support1027multi-generational families and connect them to the broader1028community services network.1029    From your experience operating at the local level, how1030important is it that federal agency policy thinks about the1031whole family unit rather than just the older adult in1032isolation? What does it mean for how you design and deliver1033programs?1034    Ms. Radka. I think that supporting multiple generation1035households and to be able to support the whole family as a1036whole is a good business, because what we are talking about in1037here is that caregiving is not done in silos. It is a family1038affair, and when we support the family, we heal the world.1039    We are taking care of the family as whole unit, and1040especially in multi-generational families where the1041grandparents create an incredible environment for1042grandchildren. The studies and research show us that when1043grandparents are present on the life of a person younger than104418, there is less anxiety and less turmoil.1045    Then we know that for grandparents that are dealing with1046isolation, the presence of grandchildren is essential for1047quality of life. We have multiple families, and especially in1048minority communities where multi-generational families are part1049of the whole household.1050    Then providing that support to maintain that unit is a good1051business. It is good for the workforce because the caregiver1052can continue to have a presence on the workforce and take care1053of their financial resources and be a part of a financial1054contributor to the family. It is for the quality of life for1055the senior and it is good children who learn responsibility and1056compassion by having the elderly--older Americans living at1057home.1058    The Chairman. Thank you. Ms. Maher, one of the things we1059hear from Sandwich Generation caregivers across the country is1060that even when they can afford to pay for some help at home,1061the system makes it entirely impossible to get it. Home care as1062your agency--often require a minimum number of hours per visit1063or per week.1064    For a family that just needs a few hours of intermittent1065help, those minimums can make professional home care completely1066out of reach. Has that been your experience? What could you--1067when you could not get the flexible, affordable help you1068needed, who filled that gap? Was it you or somebody else?1069    Ms. Maher. Thank you for talking about this important and1070often unseen part of sandwich caregiving. This is absolutely--1071probably one of the largest challenges of sandwich caregivers I1072ever had, it was when I was caring for my mom and my dad when1073my sons were younger and their hands-on caregiving needs were1074different than they are now.1075    It was virtually impossible to find trusted support,1076intermittent care for them when I wanted to go with my mom to1077her infusions or oncology appointment, or with my dad. It was1078very difficult to find that type of care.1079    When we did find somebody that we trusted, we ultimately1080chose to have her come for more hours every week than what we1081ultimately needed to be able to have here and have her1082available. Because when you find somebody you trust, you do1083whatever you can to keep them.1084    The Chairman. Thanks. Mr. Resendez, I have been working on1085the Multi-generational Home Caregiver Credit Act, which would1086provide direct tax relief to family caregivers who are1087supporting both a child and an older adult in their home. From1088a research and policy standpoint, what does the evidence tell1089us about the financial burden facing these families, and why is1090a tax based approach the right vehicle to providing meaningful1091relief?1092    Mr. Resendez. Absolutely. We know that there are tremendous1093responsibilities that come with caregiving, financial being1094chief among them. More than 48 percent of family caregivers1095experience at least one negative financial impact because of1096their caregiving responsibility. That number goes up for1097Sandwich Generation caregivers who are balancing both the1098financial responsibilities of having children alongside the1099financial possibilities of caring for an adult with a serious1100illness or disabilities.1101    We also know from our research that over half of family1102caregivers say they want a tax credit to recognize and support1103their caregiving responsibilities. On average, family1104caregivers shoulder around $7,000 to $10,000 in out of pocket1105cost due to their caregiving roles. Things like home1106modifications, transportation, medical expenses, that the tax1107code does nothing to recognize. I am married to a teacher, and1108when we buy school supplies, we can deduct those from our1109taxes.1110    That is not the case for family caregivers shouldering1111caregiving responsibilities. By enabling the tax code to1112recognize and provide a credit for family caregiver shouldering1113multi-generational care, we say that we see and value those1114expenses and want to meaningfully address them through a more1115inclusive and caregiver-friendly tax system.1116    The Chairman. Thank you. Mr. Protas, the Older Americans1117Act is the backbone of the community nutrition programs your1118network depends on, right?1119    Mr. Protas. Yes.1120    The Chairman. We have been working hard to get the OAA1121reauthorized, and Raking Member Gillibrand and I are leading1122that effort. What is the current state of the Meals on Wheels1123network in terms of capacity and demand? What would a strong,1124fully reauthorized OAA mean for your ability to serve older1125adults and give family caregivers some relief?1126    Mr. Protas. Thank you for the question, Chairman Scott. I1127want to say thank you for your leadership, particularly on the1128Senior Act that addresses social isolation and loneliness, such1129an important issue. Yes, we have been waiting for the1130reauthorization of the Older Americans Act.1131    As you know, there was a bipartisan, bicameral agreement at1132the end of 2024. We would love to see that bill that has broad1133consensus be resolved and reauthorized by the end of this1134Congress as soon as possible. Seniors are waiting. They are1135waiting to be prioritized. I think, and we have heard a lot1136here today, that the needs of seniors and their caregivers just1137do not receive the attention or the priority consideration that1138they need.1139    For Meals on Wheels programs, they are struggling. As I1140mentioned in my written testimony, in my presentation, one in1141three Meals on Wheels providers has a waitlist right now.1142Sometimes that waitlist is into the years before a senior can1143get the help they need. Reauthorization of the Older Americans1144Act would send a strong message that these programs are1145important.1146    They need support but that also has to happen in the annual1147appropriations process. Currently for Title IIIC programs, the1148OAA nutrition program, the current funding is $1.06 billion.1149That hasn't changed for the last few years. In fact, it took a1150cut for the first time in Fiscal Year 2024. We calculate that1151the need is much, much greater than that. With the $1.061152billion, we are feeding about 2.6 million seniors and providing1153those moments of care and connection.1154    GAO estimates that there are another 2.5 million low-income1155food insecure seniors who are in need who are not being served.1156To put in context why it is such a smart investment to make1157sure that we are not leaving seniors behind, our estimate of1158the funding necessary to reach all food insecure, low-income1159seniors in need is $2.285 billion.1160    That is less than a quarter of what social isolation costs1161Medicare annually. We can make a smart investment upfront and1162have tremendous savings downstream, but we just have not made1163the investments for the infrastructure, for the supports that1164we know work.1165    The Chairman. Thank you. Ms. Preve, I represent Florida,1166and Ranking Member Gillibrand represents New York, two very1167different states in a lot of ways, but I suspect when it comes1168to Sandwich Generation caregivers, the stories you hear in New1169York aren't all that different from the ones Ms. Radka hears in1170Central Florida.1171    What does the caregiving crisis look like in New York, and1172what do you think the two states have in common when it comes1173to what families actually need? We have better beaches.1174    Ms. Preve. First, thank you for the question. My colleague1175Karla takes all of our volunteers from the State of New York1176during the hard winter months. You are absolutely right. It1177doesn't matter what state you are in in this country. The issue1178of Sandwich Generation caregivers is a story that we hear1179everywhere.1180    What I find really pertinent to the caregiving conversation1181is caregiving touches every one of us. Regardless of political1182party, regardless of religious beliefs, we are all faced with1183caregiving at one point in our lives.1184    One of the things that we know from data is that if you1185support caregivers, you get way more in economic return than1186you do if you don't support caregivers. You see that in a1187variety of different entities, including people leaving the1188workforce. I think what is striking to me--and I still do home1189visits.1190    I have been in this work for 20 years. I love spending time1191in living rooms. I hear the same story regardless of who the1192caregiver is or who the care receiver is, we just need some1193help. By the time a caregiver is ready to ask for help, they1194are already at a crisis point because people like Senator Kim1195try to do this work on their own for far too long with poor1196health outcomes for their loved one because they don't have any1197supports.1198    I also think in the work that I do, it is always really1199important to make the economic case on why investments are1200important, because I know we are laser focused on budgets. Just1201to share with you a couple tidbits. Seventy-two percent of1202Sandwich Generation caregivers have reduced or stopped1203contributing to their retirement plans. We are going to see a1204cascade effect of this as people get older. They are1205withdrawing funds from retirement accounts.1206    Switching from full-time to part-time on average, you are1207losing $21,000 of income per year for your earnings. The1208lifetime employment losses are over $600,000 in a caregiver's1209lifetime. More importantly, you are reducing spending on non-1210essential items. Seventy-two percent of Sandwich Generation1211caregivers eliminate vacations, don't take additional school1212trips, reduce their hobbies.1213    Forty-five percent of the Sandwich Generation caregivers1214report taking on credit card debt. We are going in the opposite1215direction with that statistic and 62 percent of people with1216minor children delay getting married or having additional1217children due to their caregiver issues. We are multiplying the1218problem, which comes down to math of the percentage of older1219people in the population with younger caregivers.1220    Again, states like New York and Florida, we are top four as1221far as overall population is considered. There truly has not1222been enough funding through the Older Americans Act in decades1223to support those caregivers and the burden not just falls on1224the states, it falls on localities that are filling those1225holes, because we have so many people on waiting lists.1226    I will share with you, the State of New York is fourth in1227the Nation for the 60 plus population. We have really robust1228funding under Governor Kathy Hochul. We still have 75,0001229services that are waitlisted at times for six to twelve to1230eighteen months. I think we have made the economic case, but I1231think more importantly, we have made the social case that we1232should not be treating the population that developed and funded1233this country who now have some care needs that we are not1234supporting.1235    The Chairman. Yes, thank you. Ms. Radka, your organization1236serves one of the fastest growing regions in the country and1237you are on the front lines every single day connecting families1238with services. In your experience when a Sandwich Generation1239caregiver walks through your door or calls your office, what1240are they most desperate for?1241    Ms. Radka. Our tagline is actually, know us before you need1242us, because by the time we receive a caregiver in our front1243door, there is already a precipitating factor or a crisis that1244is already taking place. At that moment is guidance to be able1245to map out where to even start and sometimes that door may not1246be just the actual front door.1247    That might be sometimes a virtual door, a phone call when1248the children of older adults are in a different state, and1249their parents, their aging parents, are in Central Florida, and1250there is a crisis. There is a hospitalization or a major1251concern or a fall. What they are looking for initially is just1252mapping out that direction of where to start.1253    Where to start with legal services to determine if they1254have access to be able to represent that older adults and make1255decisions for them and then in many cases, it is basic services1256like food, shelter, and transportation.1257    In many other cases, the support on navigating the world of1258Medicare in terms of understanding how the plans work and how1259to be to access the right professionals under those plans, so1260it is a multitude of reasons. Each caregiver is provided with1261individualized care because each one represent a microcosm that1262it may not be similar to that person that walks in the door1263next to them.1264    It is important for us to leverage technology. We have1265systems where we keep a record and there is a thread so that1266caregiver doesn't have to start telling their story from the1267beginning. Any of our counselors can pick up from there and be1268able to walk with them that path that is so unique and so1269persistent right now in our communities.1270    The Chairman. Thank you. Senator Kim.1271    Senator Kim. Yes. Thank you, Chairman. I just have a few1272more questions here just based off of what I heard. Ms. Preve,1273I wanted to start with you. You know, you were laying out1274some--you know, all the different tools that are available and1275whatnot.1276    When we had a chance to be able to talk briefly, you talked1277about how, you know, more and more tech tools are arising that1278we can, you know, start to think through how that might be able1279to help provide some support. I guess I just wanted to ask you1280just more broadly, you know, what gaps in resources do you see1281most frequently when working with Sandwich Generation1282caregivers?1283    What are your thoughts on how tech might be able to1284intersect and, you know, things that we can think about how to1285be able to speed up and amplify and scale? I would be1286interested in your thoughts.1287    Ms. Preve. Thank you so much for the question. Tech has1288been a game changer in the State of New York and the reality is1289we do not have enough funding or services and supports to1290provide the level of care that Sandwich Generation caregivers1291need, but we do have technology that can assist us in that1292practice.1293    Really when we looked--when New York State Office for the1294Aging did the working caregiver survey, they then developed1295tools for employers. They also developed tools for employees to1296be able to access additional employee assistance benefits.1297    Things that already exist through employers that they1298weren't tapping into. I think specifically to some of our tech1299projects, I talked about Trualta through the New York1300Caregiving Portal. If you are a caregiver looking for services,1301you don't have time to Google what service you are looking for1302or what condition you are.1303    Trualta gives you a standardized plan. If I am caring for1304someone with a spinal cord injury, I am going to get1305information on mobility and transfers. Where if I am caring for1306someone with a cognitive impairment, I might get information1307about sundowning. You can get that information in bite-sized1308increments, either podcasts, you can read materials, watch1309videos.1310    They have a completely anonymous online support group which1311has exploded with users because you don't have to turn your1312camera on, and you don't have to say your name. Caregivers that1313have this inherent thought process of, I can't talk about this1314being hard, are able to do that in a safe environment.1315    The New York Any Care Counts Campaign, that is a national1316movement that utilizes the caregiver intensity index to score1317people and then instantly direct them not only to resources,1318but also what is helping your care journey and what is hurting1319your care journeys. In your situation, it might be beneficial1320to you that you have two sons that bring you joy, and good1321family supports, but you might be really frustrated with the1322health insurance process and trying to get access to benefits1323for a loved one. It tells you that in real time so you can then1324direct to resources that fix those.1325    Then if you look at the others that I included in my1326testimony, we have deployed over 37,000 of the animatronic1327cats, dogs, and walkers, squawkers that reduce social isolation1328and loneliness. We have utilized LEQ, which is artificial1329intelligence robot that we put in people's homes that are1330engaging with older adults and caregivers repeatedly throughout1331the day.1332    A caregiver can then send reminders to their loved one in1333real time through the tablet on the LEQ unit, and then there is1334a whole host of varieties of online supports for caregivers1335where they can learn additional tools like the Get Set Up1336platform that is free for any New Yorker, the virtual senior1337center free for a New Yorkers.1338    We also have specialized television programs that we call1339the Netflix for dementia, where an individual can actually1340watch something pertinent to what was important in their lives,1341reduces caregiver burnout and stress because while you are1342making dinner, your loved one isn't watching a TV show that1343they can't follow. They might--I use the example today of a1344retired mechanic who watched a carburetor get rebuilt on the TV1345instead of just being stuck in front of Wheel of Fortune.1346    All these things are not a replacement for the human1347connections, but they have changed the game in the State of New1348York as far as us reaching an additional two million older New1349Yorkers and their families through these low-cost, high-yield1350tech interventions.1351    Senator Kim. Yes, thanks for that. I would love to be able1352to followup and be able to learn some more there. Ms. Maher, I1353wanted to just go back to you.1354    You know, one thing that really stuck out again from your1355testimony is talking about how, you know, the entirety in which1356you have been a mother, you have also had this experience being1357a caregiver. You know I hear from many about some of the1358tensions that come between that in terms of limited resources,1359but also just in terms of the challenges for instance of1360childcare and navigating the web with elder care.1361    I wanted to hear from you just, you know, how that affected1362you. You know, if there are any particular concerns that you1363had in terms of those tradeoffs that you wanted to share with1364us.1365    Ms. Maher. Yes, absolutely. That was something that was a1366big challenge for me, especially when my boys were younger, and1367they needed more hands-on care. It is very difficult to have1368intermittent care for children or for elder care. On both ends1369of the spectrum, there is often minimal hours, a certain number1370of visits each week. A certain number of hours required.1371    I understand that from the care provider standpoint. They1372need consistency and reliability, but it is very, very1373challenging to secure intermittent care. When I finally did,1374when we did find somebody trustworthy, we had her come really1375for more hours each week than what we truly needed her for1376because there is no infrastructure or system in place to meet1377the realities of the intermittent care that is needed.1378    We did what we could to keep her. We know that we had the1379financial resources to be able to do that, and that not every1380family has that. Being able to have care, elder care or1381childcare, is not just a financial barrier. It becomes like an1382administrative and an infrastructural barrier.1383    Senator Kim. Yes, there is a lot of logistics there. Like,1384I know one of the things I didn't quite comprehend was just,1385you know, with my father, as I said, he not only has the1386Alzheimer's, but is unable to walk.1387    Just realizing that, like, I do not have a car that can1388handle this, and let alone also, you, know, kid seats for my1389car, for my children. Like, you just trying to--like just1390logistics.1391    All of a sudden, like I just realized that one day when I1392was trying to take him to another medical appointment, like1393just those different challenges there. The childcare is1394certainly something I am hearing from a lot just of the1395challenges of, you know, adding costs as well on top of this1396all, especially when caregiving sometimes requires more of our1397time, as you were saying.1398    That then that just increases, again, some of the needs1399that we then have for our kids. Just trying to understand that1400whole picture is important because sometimes I feel like my1401identity as a father to two little boys is in direct tension to1402my identity as a son to my father.1403    It feels almost zero sum in which, you know, that can1404happen. In some ways it can be, when I am thinking about1405whether or not I can save for my kid's college. You know,1406feeling like that is something I can do in the way I wanted to1407because of I don't know what is going to happen with my1408father's care and where we are going on that front.1409    Thank you again for just sharing that with us all today.1410Chairman, thanks again for your generosity and letting me be1411able to raise some of these different points.1412    The Chairman. Thank you, Senator Kim. Mr. Resendez, I am1413proud to be a co-sponsor of the Alleviating Barriers for1414Caregivers Act, which would take important steps to expand1415support and flexibility for family caregivers.1416    From your national vantage point, what are the gaps in1417federal caregiver support that legislation like the ABC Act is1418designed to fill, and what does the research tell us about what1419happens to caregivers when those gaps go unaddressed?1420    Mr. Resendez. Absolutely. Thank you, Chairman Scott, for1421your leadership on the ABC Act, a really critical piece of1422legislation that will help address a key pain point that family1423caregivers face. I think we have heard across the panel, is the1424administrative burden that family caregivers face as they1425navigate essential benefits that could support them or their1426loved ones.1427    According to our research, over 60 percent of family1428caregivers spend their days on top of the care, and for1429sandwich caregivers on top of the carer for their children, on1430top of work, navigating paperwork and navigating how to access1431this benefit. How does this benefit impact my ability to access1432that benefit? It is a maze that caregivers spend hours on hours1433a day trying to navigate.1434    The ABC Act would provide an assessment of how to reduce1435that administrative barrier from a family caregiver specific1436perspective to increase access to Medicare and Medicaid and1437SSA, Social Security Administration, benefits.1438    Really bedrock programs that family caregivers and the1439people that they are caring for rely on to make care work, to1440make home and community-based living possible, so by targeting1441that administrative burden, we go a long way in recognizing and1442honoring the time that it takes to care on a daily basis.1443    The Chairman. Thank you. Mr. Protas, the Senior Act1444includes provisions focused on multi-generational family1445support. From your perspective, operating across thousands of1446communities, how important is that federal aging policy1447connects the dots between nutrition independence in the1448families and caregivers surrounding older adults?1449    Mr. Protas. Thank you again for your leadership on the1450Senior Act. We know from years of evidence how important social1451connections are for helping seniors to live independently,1452keeping them out of emergency rooms, out of hospitalizations,1453and out of nursing homes.1454    That support also has significant health benefits too.1455Being able to bolster the ability to make those connections for1456seniors, not only helps the senior, but it provides that peace1457of mind for caregivers who can't always be there. It gives1458caregivers that ability to not face the tensions so acutely1459between putting in work hours and being there for their loved1460ones. Knowing that that kind of connection and care is there is1461a huge support for caregivers.1462    The Chairman. Ms. Preve, just briefly, how much does a1463robot cost, and how do you get funded?1464    Ms. Preve. Again, we are really lucky. Our state unit on1465Aging, Director Olsen, really loves technology. This has been1466something--when we were thrown, you know, headfirst in the1467COVID-19 pandemic in the State of New York, we were hit hard1468and fast. We had to adjust our service model to get to people.1469    We know that social isolation and loneliness is equivalent1470to smoking up to a pack of cigarettes a day. This for us was1471really prevention agenda. The LEQ robots are actually not that1472expensive. It is around $900 for the robot, but they will work1473with states that are interested, and then there is a monthly1474subscription fee. I have to tell you, LEQ looks like the Pixar1475lamp. When you get up in the morning, she wakes up, she will1476follow you.1477    I am going to use myself as an example. She will say, good1478morning, how did you sleep last night, Becky? If I say four1479days in a row, I slept terribly, and on day five I say, LEQ, I1480sleep really well, she will then prompt me and say, what did1481you do different last night and why did you sleep better? The1482AI actually learns with you as you go. She will learn who your1483relatives are.1484    If you text a photo to the LEQ unit, LEQ will announce it1485to the individual. It is the first proactive AI that we have1486seen with older people. Unlike Alexa where you have to prompt1487her, LEQ prompts you automatically. What we have found is that1488not only are people engaging in health and exercise activities1489because LEQ prompt them. They are drinking more water.1490    They are taking their medications on time. Their social1491isolation and loneliness has been reduced by 98 percent in the1492pilot that we have done over the course of the past three1493years. The most popular feature that LEQ has built in is you1494can play bingo against other LEQ users in the community.1495    Organically, our users have become friends. Some might live1496in Manhattan, and some might live Clinton County, New York, and1497they have forged these relationships. If you can change1498someone's life and reduce their risk of dying from social1499isolation and loneliness for such a low price, for us, that was1500just a win-win that we embraced wholeheartedly.1501    The Chairman. You talked earlier about, you know, I think1502return on investment. Have you been able to show your1503Legislature that you can get a return in investment?1504    Ms. Preve. Absolutely.1505    The Chairman. Yes, what is their--how do they think about1506it? Do they give you more money? Has it worked?1507    Ms. Preve. Last year, we actually have the largest1508investment for unmet needs in the history of the State of New1509York. Obviously, we are still waiting for the budget in the1510State Of New York as we speak.1511    What is really important, and I have said this to the1512Legislature before, we tell stories all the time about1513individuals, people with disabilities, we share stories, but it1514never seems to move the mark. You have to talk about the1515economics, and you have to talk about the return on investment.1516Every one of our 34 public-private partnerships has been1517measured or is being measured because we are continuing to1518deploy them.1519    When we can show a really strong return on investment, it1520absolutely gets the attention of elected officials to say this1521is going to save our state money, but it is also the right1522thing to do for people. Again, I am more than willing to1523provide follow-up on our data and metrics.1524    We have--just with our animatronic pet project, I think1525there has been over 18 studies published on the efficacy, as in1526LEQ has been in the New York Times and a variety of other1527highlighted features. Every one of them has shown a return.1528    I think for me personally, looking at a pilot that we did1529in the Rochester area in the State of New York in partnership1530with Lifespan of Greater Rochester to embed our case management1531staff in primary care physician's offices showed almost a four1532to one return on investment ratio.1533    The Chairman. Were they able to reduce spending in a1534different area because of that?1535    Ms. Preve. The Legislature or the individual primary----1536    The Chairman. No, the Legislature.1537    Ms. Preve. They--part of our unmet need funds were----1538    The Chairman. Was it Medicaid spending they saved money on1539or--how--?1540    Ms. Preve. It was Medicaid savings that we booked our1541savings against. We serve throughout the AAA network non-1542Medicaid eligible individuals that are just above the income1543benchmark, but we know if we can't get the services to them,1544ten percent spend down to Medicaid immediately to go to a1545skilled nursing facility, and an additional seven percent spend1546down to MLTC in the community, which is a much larger cost than1547the AAA services that we are able to provide. The problem is we1548have historically never had enough funding through the OAA to1549support the service infrastructure, because unlike Medicaid, we1550can't guarantee the service.1551    The Chairman. If you have data that can show on the federal1552level, because I have no impact on New York's budget, and I am1553not the Governor of Florida anymore so I can't impact their1554budget. If you any on the federal budget, I can talk to--1555because it all comes through CMS. I can talk to Mehmet Oz and1556get him to reach out. Because if you can do that, it is better1557for the patient, and it saves the Federal Government money, so1558it seems like they ought to invest more money.1559    Ms. Preve. I will send you a copious amount of information1560about cost savings by investing in our service infrastructure.1561    The Chairman. Yes, and I will be glad to--I have got--I1562talk to him quite a bit and I see him in a couple weeks. If you1563give me the data, I will get it to him and try to get him to1564reach out to you. Ranking Member, you are up.1565    Senator Gillibrand. Thank you. Thank you guys. This1566testimony has been excellent. I want to talk a little bit with1567all of you on the notion of unpaid and paid leave. Today we1568have a requirement that you can take unpaid leave by law if1569your company has over, I think, five employees.1570    What we have been trying to do is provide paid leave, and I1571want to talk about that separately. The fact that our1572caregivers just aren't earning money. Much of this care is1573uncompensated, and they are giving a trillion dollars of1574uncompensated care every year. I want to talk about that1575separately. I would like to hear from each of you, and Jason,1576you could start.1577    One in every four adults in the United States is a1578caregiver, and as this Sandwich Generation grows, the question1579of who bears the cost of caregiving has never been more urgent.1580At the same time, the people receiving the care, the children,1581the aging parents, the ill family members, are left dependent1582on whatever a worker can cobble together.1583    That is why I am leading a bill to create a national paid1584leave program, so that you could take up to three months off to1585meet the needs of a loved one, or your own for illness, but to1586meet needs of the loved one and continue to be paid a portion1587of your salary so that are not unpaid during that time.1588    Also so that don't lose your spot in your job, but also so1589you can, you know, stay in your apartment, stay in your home,1590not be unable to pay your bills. Mr. Resendez, knowing that1591caregiving is almost an unavoidable reality for most Americans,1592how should policymakers approach family and caregiving as a1593foundational investment for both the labor force and for the1594health and well-being of the people they care for? What other1595workplace flexibility should employers consider as more and1596more Americans are faced with new or compounding caretaking1597responsibilities?1598    Mr. Resendez. Absolutely. Thank you, Ranking Member1599Gillibrand, for your leadership on the Family Act and paid1600family and medical leave. More broadly, we hope that it1601inspires other members of the Senate and Congress to understand1602that caregiving isn't a niche issue.1603    It is an issue that touches more than 63 million Americans,1604and 70 percent of those family caregivers that are working age,1605age 18 to 64, balance those caregiving responsibilities while1606also balancing career responsibilities. Policymakers should1607treat paid family and caregiving leave as core economic1608infrastructure, not a fringe benefit.1609    Without it, we know that over nearly 50 percent of family1610caregivers experience negative financial impacts like stopping1611savings, taking on debt, taking high interest credit cards, or1612leaving the workforce entirely.1613    A national paid leave standard that explicitly covers1614caregiving for aging parents, sick spouses, adult children with1615disabilities, would help stabilize the workforce, protect1616retirement security, and reduce the cascading healthcare costs1617that come when family caregivers delay their own care.1618    It is also a smart economic investment. Family caregivers1619already contribute 49 billion hours of care valued at one1620trillion a year. Protecting their ability to stay in the1621workforce while caregiving is far less costly than absorbing1622the downstream impacts and burnout, and also lost tax revenue1623that happens when families have to leave the workforce, a1624particular issue that female caregivers face over their1625lifetime at an estimated cost of around $300,000 in lost1626earnings.1627    Senator Gillibrand. Ms. Preve, will you give me your1628opinion about having a national paid leave program?1629    Ms. Preve. It is a brilliant idea and again, when you look1630at what caregivers are faced with, I think there is a couple1631reasons we need to be laser focused on it. Not only because it1632is the right thing to do, because obviously we know that, but1633we know caregivers are already paying, you know, up to $10,0001634more out of pocket in their grocery carts each year but we also1635know a lot of people are leaving the workforce.1636    I hear this all over the State of New York of having to1637make the choice between staying and working or leaving and1638staying home. You know, if you look since COVID, we have lost1639almost 4.6 million people in the workforce due to caregiving--1640$44 billion in economic loss of wages. When you look at that,1641you know it makes the economic standpoint, but I think you also1642need to look at it in the larger lens of we are losing skilled1643nursing facility beds across the country.1644    We lost 750 nationally, but in the State of New York, we1645lost 14 and reduced our beds. You don't even have a choice1646anymore to stay working and have a place for a loved one to go1647because those facilities are closing at an alarming rate.1648Currently, if you look at, you know, what is happening with1649reimbursement rates, 44 percent of skilled nursing facilities1650have indicated that they are operating in the negative margins1651and 300 additional ones are looking at closure.1652    It would be one thing if we had this robust infrastructure1653for people that had to remain in the workforce, but we simply1654don't. Allowing those workers to be paid while they can take1655that time off is going to increase the overall health and1656wellness of the older population and people with disabilities,1657but it is also going to delay emergency department utilization1658and skilled nursing facility utilization, which is driving our1659healthcare costs through the roof.1660    For us, it is a win-win because it is another relatively1661low cost, very high yield intervention that is going to support1662those Sandwich Generation caregivers.1663    Senator Gillibrand. Thank you. Ms. Radka, do you have any1664opinions?1665    Ms. Radka. Definitely, I do. I think that it is so1666important to be able to support caregivers with a paid leave.1667Not only does it contribute to the mental health well-being of1668the caregiver, knowing that an employer had offered this type1669of benefits, especially when there is an early diagnosis or1670when there is a crisis happening at home with their loved one.1671    I think it also contributes to the good environment and the1672culture of the workplace and loyalty from employees. That1673ability to be able to have the security of a job, a place that1674they can go back to continue to earn a living while they1675navigate this complex world of caregivers for aging parents and1676older Americans.1677    Senator Gillibrand. Ms. Maher or Mr. Protas, do you want to1678add anything to what paid leave could have made--certainly in1679your position, Ms. Maher, that might have made a difference in1680the challenges that you faced at that time.1681    Ms. Maher. Thank you. Yes, caregiving has really shaped1682nearly every professional decision that I have made. I left1683oncology clinical research when my oldest son was just under a1684year old. When I returned to work, I had this sense that a1685traditional job with fixed hours was not going to allow me to1686meet the needs of my family. I am now self-employed, which1687gives me flexibility to show up for my family, but it comes1688with real economic tradeoffs----1689    Senator Gillibrand. Economic costs----1690    Ms. Maher. Absolutely, huge economic tradeoffs. Like it1691would be immediate and long-term, so.1692    Senator Gillibrand. Yes, and you have to pay for all your1693insurance as a self-employed person.1694    Ms. Maher. Yes.1695    Senator Gillibrand. Which is very expensive.1696    Ms. Maher. Yes.1697    Senator Gillibrand. Much more expensive.1698    Ms. Maher. Yes.1699    Senator Gillibrand. Mr. Protas, do you have any thoughts?1700    Mr. Protas. I have so many thoughts, but I will keep them--1701--1702    Senator Gillibrand. Whatever you want to share.1703    Mr. Protas [continuing]. keep them on topic. Absolutely,1704paid leave would help caregivers. It would help relieve1705burnout. It will relieve the stresses that they feel. I want to1706maybe give a different perspective. By more robustly funding1707Older Americans Act program services, we can relieve the need1708for caregivers to take time off as much as they currently do,1709whether that is paid or unpaid.1710    We have systems in place that can provide some very helpful1711complementary support to older adults in need. Chairman Scott,1712you talked before about, you know, the important return on1713investment for some of these technologies. That exists also for1714Older Americans Act program services.1715    If we make the smart upfront investments to make sure that1716families and their caregivers are getting support through1717programs that already exist, we can relieve the need for----1718    Senator Gillibrand. For that emergency care, yes. I have1719another idea for you. One of the bills that I work on with1720Senator Murphy and others is to make sure that when you are in1721one of these caregiver modes, that you are getting credit for1722your Social Security. That they are putting placeholder--it is1723as if you were remunerated, what your pay would have been, and1724that then gets put into your Social Security.1725    I would like your opinion on that bill, but I also want to1726go one step further. Imagine, as a caregiver, if you get paid1727by Social Security to do the care, as opposed to just your1728Social Security money going to an assisted living facility or1729going to a--like that you could actually be paid for the care.1730I would like your thoughts and comments on both of those ideas.1731Ms. Preve.1732    Ms. Preve. I think they are fantastic. I think one of the1733things that we are really trying to push is that if there is a1734gap in someone's employment because they were a caregiver, they1735are probably the best employee that you are ever going to get1736because literally these caregivers are schedulers, they are1737social workers, they are medical professionals. The skill set1738is just immense.1739    Not having that gap and actually the financial security of1740paying into Social Security number one is huge, but number two,1741being able to give an economic benefit to a caregiver that1742wants to do this work and who is available to do this work, is1743again--it is a return on investment for those individuals not1744ever having to go to another higher level of care. You know, to1745some of the comments today, having direct care workers is a1746national problem.1747    It has been a problem since 1987 when it was on the front1748page of the New York Times. There are not enough direct care1749workers to fill the needs in homes and communities. Allowing1750organic caregivers to get paid for the work that they were1751doing would solve that solution. Again, keep people in homes1752and communities, which is way cheaper for our system than1753forcing someone into institutional care.1754    Senator Gillibrand. Mr. Protas--why don't we just go down.1755    Mr. Protas. I think that would support caregivers1756immediately, in terms of being paid through Social Security,1757but it would also have benefits for the future for savings for1758retirement.1759    The demographic change, the shift that we have had in this1760country with a rapidly growing senior population and fewer1761younger adults who will be able to contribute and care for1762them, is something we haven't reckoned with. It seems like it1763makes sense and is a good idea to start working toward filling1764that gap.1765    Senator Gillibrand. Mr. Resendez1766    Mr. Resendez. Absolutely. Thank you for your leadership on1767these issues and ideas. Social Security credit would go a long1768way in helping to replace and stabilize the financial1769insecurity that family caregivers experience when they are1770forced to leave the workforce.1771    That was my mom's experience and millions of other1772caregivers like her, and we know that they rack up over1773$300,000 in lost earnings over a lifetime because of that1774shift. Being able to ensure that that care, which is work,1775right--this is a highly complex care, care that is valued at $11776trillion, certainly saves the Medicare and Medicaid program1777billions of dollars, trillions of dollars annually.1778    A credit would recognize that as work and ensure that1779family caregivers don't risk their financial instability to1780provide it. In terms of direct care or direct payments, this is1781something that we know family caregivers want, particularly1782lower income family caregivers and programs that can provide1783direct financial compensation to family caregivers, not as a1784handout, but for the services that they provide----1785    Senator Gillibrand. Correct.1786    Mr. Resendez [continuing]. are things that family1787caregivers want and need. We are talking about providing1788complex care, wound care, changing feeding tubes, and doing1789this in the backdrop of a direct care workforce shortage. By17902034, PHI estimates that we will need to find 10 million direct1791care workforce jobs if we are going to meet the demand for care1792in this country. That is likely not going to happen.1793    We need to think creatively about how we fill that gap.1794Bringing family caregivers into that process through programs1795like either SSA payments or consumer direction, which already1796exists in every state across the country, or the structured1797family caregiver support program enables us to value the1798contributions of family caregivers while also addressing the1799workforce shortage that we are experiencing.1800    Senator Gillibrand. Yes. It is also so much cheaper,1801because we know that for an older adult, care at home has1802better outcomes. Being able to age in place, being able to have1803your care being met. Institutional care is multitudes more1804expensive. It is the cheapest, most efficient, most effective1805care.1806    Then with the AI examples you were talking about, and you1807have the ability to have AI counterparts and telehealth1808counterparts, that caregiver can meet the need that would cost1809three times as much if you put somebody in a nursing home or an1810institutional care with much worse outcomes.1811    It is good for everybody, and it saves us much more money1812in health care costs down the line--and saves Medicare dollars1813and Medicaid dollars.1814    Mr. Resendez. Absolutely.1815    Senator Gillibrand. Ms. Maher.1816    Ms. Maher. Thank you for looking at this bill, and I think1817it will really bring some ease and help to eliminate the long-1818term economic tradeoffs that come from so many sandwich1819caregivers needing to leave the workforce. Receiving Social1820Security credit for the caregiving that is provided helps set1821up sandwich caregivers for more financial stability in the1822future.1823    Senator Gillibrand. Ms. Radka.1824    Ms. Radka. I am so glad that you asked this question,1825because the Veterans Administration already through a program1826that is called Veterans Direct Care, and one that is1827implemented at my AAA, provide a service to veterans where they1828are on the driver's seat to select their caregiver, and a1829caregiver that gets paid.1830    It could be a trusted neighbor who has background in1831medicine. It could be a relative. It could be a professional1832from the community. What is important is that these veterans1833continue to age in place, like you mentioned. It is a reduced1834cost, the preventing institutionalization. It prevents hospital1835readmission and definitely provide a quality of care.1836    Senator Gillibrand. It also affects their mental wellness.1837Mental health is a huge challenge. Again, all the evidence we1838have seen, when a senior can stay in his or her community with1839the people she knows and loves, she is going to thrive. She is1840going to do better, better outcomes. Will live longer. Will be1841healthier.1842    Ms. Radka. Definitely. I think there is something that is1843very important, and you also touched on that, is the leverage1844of technology and AI.1845    Like in our community, we have implemented a system to1846detect fall prevention. It is very discreet. It is radar based,1847but also it is monitored 24/7, and that allows that caregiver1848the peace of mind that if they are far away, or even a few1849houses or a few doors down, they can be notified immediately if1850there is a fall and we know how detrimental falls can be in our1851seniors.1852    Implementation of systems like this radar based technology1853to detect falls, or implementation of programs like the1854hospital readmission, prevention hospital, hospitalization that1855we have in our area where we put services to really give a1856peace of mind and support the caregiver with care in the home1857for the senior, it creates a better safety net to be able to1858provide care for our caregivers and our older Americans.1859    Senator Gillibrand. Thank you, everybody.1860    The Chairman. All right. I would like to thank everyone for1861being here today and participating. I Look forward to1862continuing to work with all of our members here on the1863Committee.1864    If any Senators have additional questions for the witnesses1865or statements to be added, the hearing record will be open1866until next Wednesday at 5:00 p.m. I want to thank you for being1867here. If everybody will come up, we'll get a picture.1868    [Whereupon, at 5:09 p.m., the hearing was adjourned.]1869=======================================================================18701871                                APPENDIX18721873=======================================================================18741875                      Prepared Witness Statements18761877=======================================================================1878[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]18791880=======================================================================18811882                        Questions for the Record18831884=======================================================================18851886                 U.S. Senate Special Committee on Aging18871888 "Caught in the Middle: Supporting Families in the Sandwich Generation"18891890                              May 13, 202618911892                        Questions for the Record18931894                              Karla Radka18951896                  Ranking Member Kirsten E. Gillibrand18971898    Question:18991900    Can you speak to the broad range of caregiving1901relationships amongst the caregivers you work with and why a1902more [generous/expansive] understanding of family caregivers is1903critical for this growing wave of Americans entering the1904sandwich generation?19051906    Response:19071908    Caregiving today extends far beyond traditional definitions1909and must be understood through a broader, more inclusive lens.1910    Through our work at the Senior Resource Alliance, we1911support caregivers across a wide and evolving spectrum of1912relationships. Caregivers are not only adult children caring1913for aging parents, but they also include spouses, siblings,1914grandparents raising grandchildren, and even neighbors or close1915friends who step into caregiving roles out of necessity. Many1916of these caregivers are unpaid and operate outside formally1917recognized systems of care, yet they provide essential support1918that enables individuals to remain in their homes and1919communities with dignity.1920    Within the sandwich generation, caregivers are balancing1921multiple responsibilities simultaneously raising children while1922supporting aging parents, often while maintaining full-time1923employment. Increasingly, this also includes multi-generational1924caregiving arrangements that reflect the complexity of modern1925families.1926    An expansive understanding of "family caregiver" is1927critical to ensure that policies reflect lived realities,1928promote equitable access to services, and strengthen program1929effectiveness. When definitions are too narrow, many1930individuals providing substantial care are excluded from1931support and resources designed to assist them.19321933    Policy Recommendations:19341935    To better align federal policy with the realities of1936caregiving today, Congress should:19371938      
Modernize the federal definition of "family caregiver"1939to explicitly include non-biological and non-legal caregiving1940relationships.19411942      
Expand and strengthen the National Family Caregiver1943Support Program to ensure it serves caregivers across1944relationship types and circumstances.19451946      
Promote culturally responsive caregiving approaches that1947recognize extended family and community-based caregiving1948structures.19491950      
Enhance outreach and navigation support through the1951aging network to ensure all caregivers can access services1952early and effectively.19531954    What impact does the persisting direct care workforce1955shortage have on family caregivers, particularly those in the1956sandwich generation?19571958    Response:19591960    The persistent shortage of direct care workers has a1961profound and compounding impact on family caregivers,1962particularly those in the sandwich generation. In many cases1963relying and leveraging assisted technology, like 24/7 fall1964detection that is installed in the home of seniors and engaging1965caregivers in the process and monitoring.1966    Direct care workers including home health aides and1967personal care aides are essential to enabling older adults and1968individuals with disabilities to remain safe in their homes.1969However, workforce shortages continue to limit access to these1970services, shifting increasing responsibility to family1971caregivers.As a result, family caregivers are often required to1972fill critical gaps in care delivery, taking on complex and time1973intensive responsibilities without formal training or adequate1974support. Many are forced to reduce their work hours, take1975unpaid leave, or exit the workforce entirely affecting both1976their immediate financial stability and long term retirement1977security.1978    The strain is especially acute for sandwich generation1979caregivers, who are already balancing caregiving1980responsibilities across two generations while managing1981employment and family obligations. Inadequate access to direct1982care also contributes to delays in services, increased stress,1983and a higher risk of caregiver burnout.1984    Addressing the direct care workforce shortage is therefore1985essential not only to strengthen the long term care system, but1986also to stabilize and support family caregivers.1987    Policy Recommendations:19881989    To address the workforce crisis and reduce strain on1990families, Congress should:19911992      
Increase federal investment in the direct care1993workforce, including support for competitive wages, benefits,1994and retention strategies.19951996      
Expand workforce development initiatives focused on1997training, credentialing, and career pathways for direct care1998workers.19992000      
Strengthen funding for home and community based services2001(HCBS) to improve access to care and reduce reliance on unpaid2002caregivers.20032004      
Advance financial support for family caregivers, such as2005tax credits, to offset the economic burden when formal care is2006unavailable and seeking effective models such the Veterans2007Direct Care from the Veterans Administration.20082009      
Promote integrated care models that better connect2010family caregivers and direct care workers to improve2011coordination and support.20122013                 U.S. Senate Special Committee on Aging20142015 "Caught in the Middle: Supporting Families in the Sandwich Generation"20162017                              May 13, 202620182019                        Questions for the Record20202021                              Megan Maher20222023                  Ranking Member Kirsten E. Gillibrand20242025    Question:20262027    Please share with us how caring for your parents has2028affected your employment status and work-related decisions.20292030    Response:20312032    Caregiving has shaped nearly every major professional2033decision I've made.2034    I left oncology clinical research when my oldest son was2035under a year old, during the same period my mother had been2036diagnosed with stage IV breast cancer. When I later returned to2037work, it became clear that traditional employment structures2038were difficult to reconcile with the realities of caregiving.2039    The unpredictability of caregiving - medical appointments,2040care coordination, responding to urgent situations with little2041warning - in addition to mothering two children, does not fit2042neatly into fixed schedules or limited leave policies. Much of2043caregiving happens in the spaces between planned events, and2044those demands are often invisible until they become2045unavoidable.2046    Over time, I found myself making professional decisions not2047primarily around advancement, but around flexibility and the2048ability to remain responsive to my family's needs.2049    I eventually became self-employed as an end-of-life doula,2050and that flexibility has allowed me to remain responsive as my2051family's caregiving needs have evolved. In many ways, the work2052I built professionally grew directly out of the caregiving2053realities I was living personally.2054    At the same time, self-employment has come with significant2055tradeoffs. It has meant constrained income growth, reduced2056retirement contributions, no employer-sponsored benefits, and2057long-term financial consequences that accumulate gradually over2058time.2059    I believe this is true for many caregivers. People quietly2060reshape their employment, career trajectories, and financial2061futures around what their families need. Much of that impact2062remains largely invisible from the outside and insufficiently2063recognized in policy conversations about work, caregiving, and2064economic security.20652066    Question:20672068    What kinds of caregiver and workplace offerings might have2069benefited your situation by providing you with additional2070options and peace of mind?20712072    Response:20732074    Two things would have made the greatest difference:2075flexible workplace policies and stronger caregiving2076infrastructure outside the workplace. I think they have to work2077together - one without the other is not enough.2078    On the workplace side, the most valuable offering would2079have been flexibility that was both meaningful for employees2080and workable for employers: flexibility around scheduling, some2081discretion for managers to accommodate unavoidable caregiving2082demands, and leave policies that recognize caregiving for aging2083parents as a legitimate and recurring need, not a rare2084exception. Caregiving is unpredictable. A workplace structure2085that acknowledges that reality, rather than requiring2086caregivers to manage it invisibly, would have changed the2087calculus significantly.2088    But workplace flexibility alone does not solve the problem2089if the support systems outside work are not there. What would2090have given me the most peace of mind was knowing there was2091reliable, accessible support available when caregiving needs2092changed unexpectedly - support that did not require navigating2093complicated systems or planning weeks in advance. An employee2094assistance program with real caregiving navigation support2095would have been enormously valuable: someone who could help2096identify what resources existed locally, through federal2097programs, and within the healthcare system.2098    For years, I did not know what I did not know. A single2099knowledgeable person pointing the way would have changed that.2100    For sandwich caregivers specifically, employer-sponsored2101backup childcare - the kind many large employers now offer for2102new parents - would have been transformative during the years2103when my sons were young and my caregiving responsibilities were2104most acute. Finding trusted, last-minute childcare for a single2105appointment was one of the hardest logistical challenges of2106those years. I also believe backup elder care support would2107make an enormous difference for many caregivers trying to2108balance work responsibilities with the unpredictable realities2109of caring for aging parents or relatives.21102111    Question:21122113    What policy reforms should Congress prioritize to better2114support family caregivers' financial security and workforce2115participation?21162117    Response:21182119    Three areas deserve urgent attention.2120    First, Congress should prioritize simplifying access to2121federal programs. The Alleviating Barriers for Caregivers Act2122addresses something I have witnessed firsthand, not in my own2123caregiving, but in my work supporting families. Navigating2124Medicaid is, for many families, meticulous and exhausting. The2125paperwork is rigorous, extraordinarily time-consuming, and2126requires a meticulous attention to detail that is difficult to2127maintain while actively caregiving. The process is opaque, and2128even finding the correct pathway can be difficult. Families2129apply, get denied, appeal, and start over. Many end up needing2130to hire a professional to help them through the process, which2131creates another cost families may not be able to absorb.2132    The Home and Community-Based Services (HCBS) Medicaid2133waiver program deserves particular attention. It is the pathway2134that can allow someone to receive home-based services and2135remain in the place they call home rather than entering a2136nursing facility. In practice, the waitlists can be2137extraordinarily long, and the eligibility rules, documentation2138requirements, and application processes are often burdensome2139for families already under significant strain.2140    What I find difficult to reconcile is this: it is often2141easier, procedurally, to place someone in a nursing facility2142than it is to support them remaining at home. For families who2143want to keep a loved one at home - which is what many people2144want, and what research has shown leads to better outcomes\1\ -2145the burden can be significantly higher. Families are often2146required not only to go through the already rigorous Medicaid2147application process, but then also endure additional layers of2148assessments, documentation, and eligibility determinations2149specific for HCBS. Even after completing that process, many2150encounter extraordinarily long waitlists, inconsistent2151availability, or the reality that services may never become2152available at all. This imbalance in access and support deserves2153to be addressed directly.2154---------------------------------------------------------------------------2155    \1\ Rachel M. Werner et al., "Patient Outcomes After Hospital2156Discharge to Home Health Care vs Skilled Nursing Facility," JAMA2157Internal Medicine 179, no. 5 (2019): 617-623, doi.org; National2158Institutes of Health, "Effectiveness and Cost-Effectiveness of Home-2159Based Support for Older Adults," PubMed Central, last modified 2017,2160nih.gov; "Long-Term Care Survival Rates Among Matched Beneficiaries,"2161The Gerontologist 58, no. 4 (2018): 685-694.2162---------------------------------------------------------------------------2163    Second, Congress should prioritize meaningful financial2164recognition of caregiving's economic cost. The2165Multigenerational Home Caregiver Credit Act is an important2166step. Caregiving carries real and often invisible financial2167costs: increased household expenses, constrained professional2168capacity, deferred income, reduced savings, and long-term2169financial tradeoffs. A tax credit that acknowledges those costs2170formally would be both practically helpful and symbolically2171important.2172    Third, paid family leave must include caring for aging2173relatives. Senator Gillibrand raised this during the hearing,2174and I want to support it clearly for the record. The caregiving2175workforce is not only new parents. Sandwich generation2176caregivers are navigating the needs of aging parents at the2177same time they are raising children and maintaining careers.2178Paid leave that covers elder caregiving - not only parental2179leave - would be a significant and meaningful support for2180millions of Americans doing this work.21812182    Question:21832184    Given that one in five families is now spending more than2185$30,000 a year on childcare, can you speak to how these2186prohibitive costs specifically impact your ability to save for2187your own future while also managing the medical needs of your2188aging father?2189    Response:21902191    The financial reality of sandwich caregiving is a squeeze2192from both directions. For many of us, that squeeze does not2193announce itself all at once. It accumulates quietly, over2194years.2195    When my sons were young and my caregiving responsibilities2196were most acute, childcare costs were significant. Those were2197the same years I was navigating my mother's illness, supporting2198my father through a medical crisis, and eventually building a2199self-employed practice around the realities of caregiving in my2200family. The costs were simultaneous and compounding - not only2201in dollars spent, but in professional capacity, income growth,2202and long-term financial trajectory.2203    I want to speak clearly about what self-employment means2204for long-term financial security, because I think it is2205underrecognized in this conversation. I made a deliberate2206choice to be self-employed because traditional employment was2207not well suited to the unpredictability of my caregiving2208responsibilities. That choice gave me flexibility. It also2209meant no employer-sponsored retirement plan, no employer match,2210no employer-sponsored benefits, and an income I intentionally2211constrained to make space for my family.2212    Those are not temporary costs. They are permanent ones that2213compound over time and show up in retirement security.2214    This is true for many sandwich caregivers. The financial2215impact is not only what we spend. It is what we do not save, do2216not invest, and do not accumulate because caregiving reshapes2217the architecture of our professional and financial lives in2218ways that are largely invisible from the outside and largely2219unrecognized by policy.2220    The combined direct out-of-pocket costs and the ongoing2221responsibilities, time demands, and employment disruptions2222associated with caring for children and aging family members2223create long-term consequences for caregivers' financial2224futures. That is something this Committee should take2225seriously.22262227                 U.S. Senate Special Committee on Aging22282229 "Caught in the Middle: Supporting Families in the Sandwich Generation"22302231                              May 13, 202622322233                        Questions for the Record22342235                             Jason Resendez22362237                  Ranking Member Kirsten E. Gillibrand22382239    Question:22402241    In what ways do home- and community-based services provide2242a lifeline for sandwich generation caregivers?22432244    Response:22452246    Home- and community-based services are often the difference2247between a sandwich generation caregiver being able to stay in2248the workforce and being forced to drop out or institutionalize2249a loved one. The 2025 Caregiving in the U.S. report finds that225029 percent of caregivers fall into the sandwich generation2251category, simultaneously providing care for children and2252adults, and among caregivers under age 50, that number rises to225347 percent(1) -a population already juggling paid work,2254childrearing, and high-intensity care. HCBS-personal care,2255adult day programs, home health, respite, and supported2256employment-directly absorbs hours of care that would otherwise2257fall to these families, allowing them to remain employed,2258sustain their own health, and parent their children. Over five2259million people receive Medicaid-covered home care services2260annually(2), and for the family members of those recipients,2261HCBS is functionally the public infrastructure that makes their2262dual caregiving role survivable.22632264    Question:22652266    How might recent Medicaid cuts put home- and community-2267based services at risk, and what impact would this have on2268sandwich generation caregivers who would experience a loss of2269crucial support?22702271    Response:22722273    The 2025 reconciliation law is estimated to reduce federal2274Medicaid spending by approximately $911 billion between 20252275and 2034-roughly a 14 percent reduction in federal funding for2276the program(3)-and HCBS is uniquely exposed because, unlike2277nursing facility care, it is an optional Medicaid benefit.2278During the last major reduction in federal Medicaid spending,2279all states reduced spending on home care: 40 states served2280fewer people and 47 states cut benefits or payment rates for2281long-term care providers(3). The likely consequences for2282sandwich caregivers are longer waiting lists, fewer authorized2283service hours, lower provider rates that worsen workforce2284shortages, and tighter eligibility-forcing more unpaid hours2285onto family members already reporting record financial strain2286and burnout(1). In practical terms, every hour of HCBS the2287system cuts is an hour transferred to a daughter, son, or2288spouse who is also raising kids and holding a job.22892290    Question:22912292    Given the preference for and cost savings in providing2293supports and services through HCBS over institutional settings,2294could you please speak to the importance of rebalancing our2295systems to address this reality?22962297    Response:22982299    Rebalancing is both what people want and what costs less.2300McGarry and Grabowski found that a one percent increase in HCBS2301spending was associated with state nursing home populations2302falling by an average of 47 residents and institutional2303Medicaid LTSS spending dropping by $7.3 million, with no2304evidence of a "woodwork" effect on Medicaid enrollment(4). In23052023, average annual Medicaid LTSS expenditures were $17,2982306per person for individuals receiving HCBS, compared with2307$54,462 for individuals in institutional settings, and the2308national evaluation of Money Follows the Person found that2309average per-person Medicaid health and LTSS costs were 23-302310percent lower following transitions back to the community(5).2311Yet structural bias persists: nursing facilities are a2312mandatory Medicaid benefit while HCBS is optional(5), forcing2313many older adults and people with disabilities into more costly2314institutional settings even when their needs and preferences2315could be met at home. Eliminating that bias-by making a core2316HCBS benefit mandatory, sustaining Money Follows the Person,2317and tying enhanced federal match to rebalancing progress-would2318align spending with both consumer preference and fiscal2319reality.23202321    Question:23222323    Knowing that caregiving is almost an unavoidable reality2324for many Americans, how should policymakers approach family and2325caregiving leave as a foundational investment for both the2326labor force and for the health and wellbeing of the people they2327care for?23282329    Response:23302331    Policymakers should treat paid leave the way they treat2332roads or public schools: as core infrastructure that enables2333the rest of the economy to function. More than 63 million2334Americans-nearly one in four adults-provided care for an adult2335or child with a complex medical condition or disability and2336more than 60% provide that care while working. A national, job-2337protected paid leave program-covering serious illness, end-of-2338life care, and care for a parent, child, spouse, or chosen2339family member-keeps workers attached to jobs, preserves wage2340and retirement growth (which disproportionately protects women2341and caregivers of color), and improves outcomes for the person2342being cared for. Without it, the United States will continue to2343absorb the cost as lost productivity, premature workforce2344exits, and higher downstream Medicaid spending when unpaid2345caregiver health collapses.23462347    Question:23482349    What other workplace flexibilities should employers2350consider as more and more Americans are faced with new or2351compounding caretaking responsibilities?23522353    Response:23542355    Beyond paid leave, employers should normalize flexible and2356predictable scheduling, remote and hybrid options where2357feasible, part-time-with-benefits pathways, and intermittent2358leave that tracks the episodic nature of real caregiving (a2359hospital discharge, a fall, a new diagnosis). Concrete benefits2360matter: subsidized backup care for elders and children,2361employer-paid respite, navigator and care coordination2362services, eldercare FSA-style accounts, and caregiver employee2363resource groups to reduce isolation. Over 40 percent of2364caregivers now provide high-intensity care, and many perform2365complex medical tasks while only 22 percent receive training1-2366designs that only accommodate a short, one-time leave miss the2367actual shape of long-term caregiving. The business case is2368straightforward: retention of experienced workers, lower2369turnover costs, and reduced presenteeism among the roughly one2370in four employees who are caregivers right now.23712372    Question:23732374    How do you respond to the argument that caregiving should2375be a purely uncompensated family responsibility, and why is2376direct financial support a necessary investment?23772378    Response:23792380    Family caregiving is essential, skilled work, and it2381deserves to be treated that way. Caregivers provide an2382estimated $1.1 trillion worth of care each year-care the public2383system would otherwise have to buy at market rates-and the work2384is more demanding than ever. Today's caregivers handle complex2385medical tasks that once required a hospital and trained2386professionals: managing medications and IV lines, operating2387monitoring equipment, dressing wounds, and coordinating across2388multiple specialists, often around the clock and while holding2389down jobs of their own.(1) Work this skilled and this vital2390calls for real support, not gratitude alone. Formal supports2391and services-refundable caregiver tax credits, Social Security2392caregiver credits, Medicaid self-direction programs, paid2393leave, training, and respite care-recognize caregiving for what2394it is: a demanding job that sustains both the health system and2395the people who depend on it, while preventing the larger costs2396that follow when caregivers are pushed into poverty, forced to2397retire early, or worn down until their own health gives way.23982399    Question:24002401    Can you discuss how building a stronger long-term care2402system would reduce the burden on family caregivers and help2403support the broader economy?24042405    Response:24062407    A robust long-term care system functions as workforce2408infrastructure. When HCBS, adult day, home health, and trained2409direct care workers are available and affordable, family2410caregivers can stay in paid jobs, contribute to GDP and tax2411revenue, and continue saving for their own retirement; when2412those supports are absent, employers absorb the losses through2413turnover and reduced hours, and Medicaid eventually absorbs2414them through avoidable institutionalization in emergency room2415visits and nursing homes. The number of family caregivers has2416jumped to 63 million Americans-a 45 percent increase, or nearly241720 million more caregivers, over the past decade.(1) That2418growth is picking up speed as the population ages. Building the2419system now costs far less than the alternative: leaving2420families to carry the burden and paying for more expensive2421nursing-home care later.24222423    Question:24242425    Beyond direct caregiver support, what gaps exist in the2426long-term services and supports infrastructure itself, such as2427workforce shortages in home health and adult day programs, that2428can force families into caregiving roles with inadequate2429support?24302431    Response:24322433    Even with generous caregiver benefits, families hit a wall2434when there are no workers or programs to pay for. The direct2435care workforce numbers 5.4 million workers, including nearly24363.2 million home care workers.(6) The field can't hold onto2437people: median annual turnover for nursing assistants in2438nursing homes was nearly 100 percent in 2017-2018, and home2439care turnover ran close to 75 percent in 2024.6 At the same2440time, adult day programs have shrunk in many states, respite2441care is chronically underfunded, rural areas have especially2442thin home care networks, and waiting lists for home- and2443community-based services stretch for years in many states.(2)2444So families "choose" to provide care only in the narrowest2445sense-often there's no alternative, no matter their insurance2446or income.24472448    Question:24492450    What federal investments in the paid LTSS workforce would2451most reduce unmet need among older adults?24522453    Response:24542455    The federal investments with the largest expected return on2456unmet need are: (a) a permanent enhanced Federal Medical2457Assistance Percentage (FMAP) for HCBS tied to workforce wage2458floors and rebalancing benchmarks; (b) a substantial, sustained2459increase in funding for the Older Americans Act, including2460Title III-E for caregivers and nutrition and transportation2461programs; (c) federal floor wages and benefits for Medicaid-2462funded direct care workers; (d) reinvigorated Money Follows the2463Person and full implementation of the Ensuring Access to2464Medicaid Services rule; and (e) funded apprenticeships and2465career ladders for the direct care workforce.24662467    Question:24682469    What legislative opportunities are there to better support2470family caregivers, such as enhanced training, financial relief,2471or increased access to respite care?24722473    Response:24742475    Several bills now before Congress map directly onto the2476needs you've identified-financial relief, training, respite2477care, and access to care.2478    On financial relief, several bills stand out. The Social2479Security Caregiver Credit Act (S. 4396 / H.R. 8490) would2480credit eligible caregivers with up to five years of deemed2481wages toward their Social Security benefits, addressing the2482fact that total wage, pension, and Social Security losses due2483to caregiving exceed $300,000 over a lifetime. The2484Multigenerational Home Caregiver Credit Act (S. 3295 / H.R.24857584) would establish a $2,000 nonrefundable tax credit for2486adult family members who live with an aging relative and2487provide at least 10 hours per week of qualifying care. The2488FAMILY Act (S. 2823 / H.R. 5390) would establish the country's2489first comprehensive national paid family and medical leave2490program: up to 12 weeks of partial wage replacement. And the2491HELP Copays Act (S. 864 / H.R. 6423) would require insurers and2492pharmacy benefit managers to count copay assistance toward a2493patient's deductible and out-of-pocket maximum.2494    On respite care and training, the foundation is the Older2495Americans Act reauthorization (S. 2120), which underpins the2496home- and community-based services system; its National Family2497Caregiver Support Program (Title III-E) is the only federal2498program dedicated specifically to supporting family caregivers-2499funding respite, training, counseling, and information and2500referral services. Paired with it, FY 2027 appropriations would2501direct $256 million to the National Family Caregiver Support2502Program and $20 million to the Lifespan Respite Care Program,2503given that more than a third of caregivers want respite and2504only 14 percent receive it.2505    On access to care and earlier diagnosis, the ASAP Act (S.25063267 / H.R. 6130) would permit Medicare to cover FDA-cleared2507blood-based screening tests for Alzheimer's and related2508dementias. Under current law, Medicare is barred from covering2509these tests without specific congressional authorization, and2510the result is that fewer than 10 percent of people are2511diagnosed at the mild cognitive impairment stage, when2512treatment is significantly more effective. For the millions of2513caregivers supporting a parent or grandparent with cognitive2514decline, earlier diagnosis means a longer window for treatment2515and planning-and a delay in the most intensive and costly2516phases of dementia care.2517    On easing the burden of navigation, the ABC Act (S. 1227 /2518H.R. 2491) would require CMS, the Social Security2519Administration, and CHIP to identify ways to reduce2520administrative burden on family caregivers-a response to the2521fact that one in four caregivers explicitly say they want help2522with forms, paperwork, and eligibility for services.2523    Finally, these bills are most effective inside a coherent2524national framework: the National Strategy to Support Family2525Caregivers, the first-ever federal roadmap, authorized by the2526bipartisan RAISE Family Caregivers Act. The path forward is to2527reauthorize the RAISE Act through the Older Americans Act2528reauthorization, double the implementation funding, set2529measurable targets, and hold federal agencies accountable.25302531    Question:25322533    What lessons can we draw from the American Rescue Plan2534Act's enhanced federal match for HCBS, and what would it take2535to translate that one-time investment into durable HCBS system2536improvements?25372538    Response:25392540    Section 9817 of the American Rescue Plan Act gave2541qualifying states a temporary boost-a 10 percentage-point2542increase in the federal share of Medicaid spending (the FMAP)2543for certain home- and community-based services. As a result,2544states expected to spend nearly $37 billion to enhance, expand,2545or strengthen those services, including essential caregiver2546supports like self-directed programs.(8) The lesson is2547encouraging but incomplete: even a temporary increase in the2548federal match produced fast, measurable gains-higher pay rates,2549recruitment and retention bonuses, shorter waiting lists, and2550new technology investments. But states warned all along that2551one-time money couldn't sustain ongoing wage increases or new2552services.2553    Turning that one-time infusion into lasting change takes a2554permanent enhanced FMAP for these services-tied to2555transparency, minimum wage floors for workers, and real2556progress on rebalancing. It also takes making these services a2557mandatory Medicaid benefit, so states can't pull back the2558moment federal support fades.25592560    Question:25612562    How could streamlining and simplifying Medicaid HCBS waiver2563authorities reduce administrative complexity for states and2564beneficiaries navigating the patchwork system?25652566    Response:25672568    The current patchwork-1915(c) waivers, 1915(i) and 1915(k)2569state plan options, 1915(j) self-direction, and 11152570demonstrations-creates real administrative drag for states and2571bewildering complexity for families navigating eligibility,2572services, and waiting lists. The Bipartisan Policy Center has2573recommended that Congress streamline the authority process into2574one that captures the existing flexibilities within current2575waivers, such as the commonly used 1915(c) waiver, preserving2576access while making service delivery less administratively2577complex(9). A consolidated HCBS authority-with a single set of2578person-centered planning, conflict-free case management, and2579quality reporting standards-would reduce state administrative2580cost, shrink approval timelines, and let beneficiaries move2581across services and life stages without re-qualifying every2582time their needs change.25832584    Question:25852586    What is your assessment of how the current federal-state2587HCBS financing structure is performing, and what reforms would2588most meaningfully expand older adults' ability to receive care2589at home and in the community?25902591    Response:25922593    The current structure is producing slow rebalancing but at2594the cost of profound inequity: where you live and what your2595disability label is determine whether you get services or sit2596on a multi-year list. From 2022 to 2023, HCBS users as a2597percentage of total Medicaid LTSS users grew from 86.6 to 87.12598percent, while HCBS expenditures as a percentage of total2599Medicaid LTSS expenditures fell from 64.6 to 63.8 percent(10)-2600signaling that more people are getting some HCBS but at thinner2601per-person service levels. The reforms most likely to expand2602older adults' ability to age at home are: making a core HCBS2603benefit mandatory in Medicaid (mirroring the existing mandatory2604status of nursing facility care); a permanent enhanced FMAP for2605HCBS; federally enforced minimum service standards; dedicated2606waiting-list reduction funding; and Medicare coverage of a2607meaningful long-term care benefit so that Medicaid is not the2608only payer of last resort.26092610    Question:26112612    What actions should federal policymakers take to increase2613recruitment and retention of direct care workers, and how would2614those policies improve the experiences of family caregivers?26152616    Response:26172618    Despite incremental gains, the median hourly wage for2619direct care workers was just $17.36 in 2024, with median annual2620earnings just under $26,000(7), and Medicaid is the dominant2621payer for HCBS services-meaning federal policy effectively sets2622wages in this field. Federal actions that would most move2623recruitment and retention include: a required pass-through of2624rate increases to worker compensation; federally funded2625apprenticeship and certification pathways with stackable2626credentials; immigration pathways for direct care occupations;2627health and retirement benefits parity; and OSHA-backed safety2628standards. For family caregivers, a stable, decently paid2629workforce means actually being able to find a worker-reducing2630the burden of last-minute call-offs, training a revolving door2631of aides, and filling unfilled hours themselves.26322633    Question:26342635    Can you speak to why investing in the direct care workforce2636including improving wages, benefits, training, labor2637protections, and career pathways is critical to meeting the2638nation's long-term care needs? And what should Congress be2639doing to support and stabilize the direct care (caregiving)2640workforce so that seniors, people with disabilities, and2641families can actually access the care they need?26422643    Response:26442645    PHI's twenty years of research has documented chronic2646challenges facing a direct care workforce comprised largely of2647women, people of color, and immigrants, who-despite incremental2648wage growth and the importance of their work-still face2649significant economic instability(7). The HCBS workforce is2650projected to grow more than any single occupation in the coming2651decade, creating an estimated 700,000-plus new jobs, but2652turnover runs upwards of 80 percent(9). A workforce in which a2653significant share of workers live in low-income households and2654rely on public assistance cannot be the foundation of care for2655the largest aging cohort in U.S. history(7). Congress should:2656(1) fund apprenticeship, training, and advanced-role pathways2657(including universal direct care worker credentials and2658advanced aide roles); (2) extend FLSA and NLRA protections2659fully to home care workers; (3) make permanent the enhanced2660HCBS FMAP; and (4) invest in workforce data infrastructure so2661states can target shortages.26622663    Question:26642665    How would passing the Domestic Workers Bill of Rights2666support the direct care workforce that many sandwich caregivers2667rely on?26682669    Response:26702671    There are an estimated 2.2 million domestic employees2672across the United States working in private homes to provide2673direct care, child care, and house-cleaning services(11), and2674they remain partially or wholly excluded from foundational2675labor protections enacted in the 1930s. The federal Domestic2676Workers Bill of Rights Act (S. 3396 / H.R. 3971, 119th2677Congress) would extend common workplace protections to this2678workforce (overtime, paid sick days, freedom from2679discrimination and harassment); require written agreements and2680privacy protections; and provide a temporary increase in the2681federal medical assistance percentage for Medicaid-funded2682services delivered by domestic employees(11,12). For sandwich2683caregivers, this matters because stable, fairly paid home care2684workers are far more likely to stay in the job, reducing the2685constant retraining and gap-filling that families currently2686absorb, and the bill's FMAP boost would channel real wage gains2687to the workers families depend on most.26882689                        Senator Raphael Warnock26902691    Question:26922693    Nearly 42 percent of Georgians aged 65 or older depend on2694Social Security benefits for at least half of their income.2695These benefits help them afford daily expenses and alleviate2696the financial burden on sandwich caregivers, who cover2697essential services for older adults. However, since January26982025, the Trump administration has cut more than 7,000 Social2699Security Administration (SSA) employees, and Georgia lost2700nearly 10 percent of its SSA workforce between Fiscal Year27012024-2025. Due to massive workforce cuts, Georgians must wait2702weeks to schedule an appointment with the SSA field office and2703an average of 11 months for disability claims.2704    How can Congress improve SSA customer service to ensure2705older adults in states like Georgia have access to their hard-2706earned benefits?27072708    Response:27092710    Congress should: (1) restore SSA's frontline workforce2711through dedicated, multi-year administrative funding with2712staffing floors at field offices, prioritizing states like2713Georgia that have lost a disproportionate share; (2) require2714SSA to publicly report disaggregated, state-level wait-time and2715backlog data, after the agency's mid-2025 removal of detailed2716customer service metrics obscured the impact of staffing cuts;2717and (3) halt further field office closures, since older adults2718and their family caregivers depend disproportionately on in-2719person service. Every delayed benefit pushes a Georgia family2720closer to crisis and a caregiver closer to leaving the2721workforce-a cost the public system ultimately absorbs anyway.27222723    Question:27242725    Sandwich caregivers face mounting stress from managing the2726rising cost of child care while also caring for their aging2727family members. Compared to average parents who spend 202728percent of their annual income on child care, they spend an2729additional 17 percent of their annual income caring for older2730adults. On April 11, 2025, Senator Bennet and I co-introduced2731S. 1393, the American Family Act, which would expand the Child2732Tax Credit (CTC) by providing a $4,320 credit for families with2733children under six years old and a $3,600 credit for families2734with children aged 6-17.2735    How would an increase in the CTC help sandwich caregivers2736in Georgia, who carry the financial burden of supporting two2737generations of their families?27382739    Response:27402741    According to National Alliance for Caregiving and AARP2742research, 29 percent of family caregivers are in the sandwich2743generation, rising to 47 percent among caregivers under 50, and2744especially common among Latino (43 percent) and Black (362745percent) caregivers-populations strongly represented in2746Georgia.(1) The financial pressure is concrete: one in four2747family caregivers are taking on debt, half report a negative2748financial impact from caregiving, and one in five cannot afford2749basic needs like food.2750    An expanded Child Tax Credit is one of the most effective2751tools we have to relieve that pressure. The American Family Act2752would increase the credit's value from $2,000 to $6,360 for2753newborns, $4,320 for children age one to six, and $3,600 for2754children age six to seventeen, and-critically-deliver it as a2755refundable, monthly advance payment. For a sandwich caregiver2756in Georgia, monthly cash flow is the difference between2757covering this month's home health aide and skipping it; between2758keeping a child in licensed care and patching together informal2759arrangements that pull the caregiver out of the workforce. The27602021 American Rescue Plan version of the expanded CTC cut child2761poverty roughly in half almost overnight; restoring and2762improving on that policy through the American Family Act would2763do the same for the families holding up two generations at2764once. Paired with the caregiving-specific investments-HCBS,2765paid leave, the Credit for Caring Act, and a stabilized direct2766care workforce-the expanded CTC is a foundational piece of a2767comprehensive family economic policy, not a competing one.27682769Sources & Citations277027711.      AARP and National Alliance for Caregiving. Caregiving2772in the U.S. 2025. Washington, DC: AARP, July 24, 2025. DOI:277310.26419/ppi.00373.001. https://www.aarp.org/pri/topics/ltss/2774family-caregiving/caregiving-in-the-us-2025/277527762.      KFF. "Medicaid Home Care (HCBS) in 2025." Based on the277723rd KFF survey of officials administering Medicaid home care2778programs in all 50 states and DC (April-July 2025). https://2779www.kff.org/medicaid/medicaid-home-care-hcbs-in-2025/278027813.      KFF. "States' Management of Medicaid Home Care Spending2782Ahead of H.R. 1 Effects," November 2025. https://www.kff.org/2783medicaid/states-management-of-medicaid-home-care-spending-2784ahead-of-h-r-1-effects/278527864.      McGarry, B. E., & Grabowski, D. C. (2023). Medicaid2787Home and Community-Based Services Spending for Older Adults: Is2788There a "Woodwork" Effect? Journal of the American Geriatrics2789Society, 71(10), 3143-3151. DOI: 10.1111/jgs.18478. https://2790agsjournals.onlinelibrary.wiley.com/doi/10.1111/jgs.18478279127925.      Caldwell, J., Bixby, L., Siegel, R., Pickern, S.,2793Stober, K., & Cahn, D. (April 2026). Home and Community-Based2794Services Improve Outcomes While Reducing Costs [Research2795Brief]. Community Living Policy Center, Lurie Institute for2796Disability Policy, Brandeis University. https://2797heller.brandeis.edu/community-living-policy/research-policy/2798publications/pdfs/briefs/hcbs-improve-outcomes-and-reduce-2799costs.pdf280028016.      PHI. "Understanding the Direct Care Workforce" (updated28022025). https://www.phinational.org/policy-research/key-facts-2803faq/280428057.      PHI. Direct Care Workers in the United States: Key2806Facts 2025. September 2025. https://www.phinational.org/2807resource/direct-care-workers-in-the-united-states-key-facts-28082025/280928108.      Centers for Medicare & Medicaid Services.2811"Strengthening and Investing in Home and Community Based2812Services for Medicaid Beneficiaries: American Rescue Plan Act2813of 2021 Section 9817." https://www.medicaid.gov/medicaid/home-2814community-based-services/guidance-additional-resources/2815strengthening-and-investing-home-and-community-based-services-2816for-medicaid-beneficiaries-american-rescue-plan-act-of-2021-2817section-9817281828199.      National Association of Counties. "Medicaid cuts2820threaten home and community-based care," March 2025 (with2821comments from Lisa Harootunian, Bipartisan Policy Center, and2822Stephen McCall, PHI). https://www.naco.org/news/medicaid-cuts-2823threaten-home-and-community-based-care2824282510.      Carpenter, A., Stepanczuk, C., Murray, C., & Wysocki,2826A. (2025). Trends in Users and Expenditures for Home and2827Community-Based Services as a Share of Total Medicaid Long-Term2828Services and Supports Users and Expenditures, 2023. Mathematica2829for the Centers for Medicare and Medicaid Services. https://2830www.medicaid.gov/medicaid/long-term-services-supports/2831downloads/ltss-rebalancing-brief-2023.pdf2832283311.      U.S. Congress. Domestic Workers Bill of Rights Act, S.28343396 (Sen. Gillibrand, introduced December 9, 2025) and H.R.28353971 (Rep. Jayapal, introduced June 16, 2025), 119th Congress2836(2025-2026). https://www.congress.gov/bill/119th-congress/2837senate-bill/3396/text2838283912.      National Domestic Workers Alliance. "As Care Remains2840Essential, Federal Domestic Workers Bill of Rights Reintroduced2841to Extend Long-Overdue Labor Protections," June 16, 2025.2842https://www.domesticworkers.org/press-releases/as-care-remains-2843essential-federal-domestic-workers-bill-of-rights-reintroduced-2844to-extend-long-overdue-labor-protections/28452846                 U.S. Senate Special Committee on Aging28472848 "Caught in the Middle: Supporting Families in the Sandwich Generation"28492850                              May 13, 202628512852                        Questions for the Record28532854                              Josh Protas28552856                  Ranking Member Kirsten E. Gillibrand28572858    Question:28592860    How do we best support older Americans who do not have any2861family members to serve as caregivers?28622863    Response:28642865    For older Americans without family caregivers, robust2866investment in community-based services like Meals on Wheels is2867not optional. It is essential. The scale of the need is2868significant: 1 in 2 seniors living alone lack the income to pay2869for basic needs,(1) and 12 million older adults face financial2870challenges that impact their ability to age at home.(2) For2871these individuals, community-based programs made possible2872through the Older Americans Act help with critical support and2873assistance to fill in the gaps and enable seniors to remain at2874home, where they prefer to be.2875    These programs serve as a direct lifeline, providing2876nutritious meals and critical safety and wellness checks,2877social connection, and referrals to other health and supportive2878services.(1) For seniors without family nearby, Meals on Wheels2879volunteers are often the only people who check on them2880regularly, serving as the critical first line of defense2881against falls, medical emergencies, and untreated health2882conditions. The stories of Robin in Norman, Oklahoma, who was2883in cardiac distress when Meals on Wheels volunteers arrived and2884called 911, and Patricia in San Diego, California, whose home2885fire was extinguished by a volunteer, illustrate how these2886services can be lifesaving for seniors with no one else to look2887out for them.(1)2888    Nearly 14 million older Americans are threatened by or2889experiencing hunger, with 1 in 2 seniors living alone lacking2890the income to pay for basic needs.(2) For many vulnerable2891seniors, and particularly for those without family, they have2892no supplemental source of support to fill in the gaps to make2893ends meet. A senior on a four-month waitlist for Meals on2894Wheels services with family nearby may have someone able to2895bring groceries or check in. A senior on that same waitlist2896with no family may be left to struggle and suffer alone.2897    Addressing isolation is not a secondary concern for seniors2898without family support. Meals on Wheels volunteers are often2899the only regular human contact a home-delivered meal client2900receives.(1) Social isolation and loneliness among older adults2901are serious public health crises linked to increased risks of2902depression, cognitive decline, heart disease, and mortality.2903Research has found that social isolation among older adults2904leads to an extra $6.7 billion in Medicare spending annually,2905comparable to the costs associated with having high blood2906pressure or arthritis.(1)2907    Despite the effectiveness of Meals on Wheels services in2908meeting the needs of vulnerable seniors, community-based2909programs are experiencing growing need, high costs, and2910widening funding gaps. One in three local Meals on Wheels2911providers maintains a waitlist, with seniors waiting an average2912of four months for vital meals, connection and care, and in2913some cases, seniors must wait two or more years for the2914services they need and deserve.(1) Nearly two-thirds of2915providers with waitlists serve rural areas, where there is2916often less access to supportive services.2917    Federal funding has not kept pace with growing need for2918years. Between 1999 and 2023, the number of older adults2919experiencing low or very low food security quadrupled; but2920during that same period, the total purchasing power of OAA2921Nutrition Program funding measured in 2024 dollars declined.2922The OAA Nutrition Program served roughly the same number of2923seniors (2.6 million) in 2024 as it did in 1999, despite2924dramatic growth in the senior population over that period.12925There are an estimated 2.5 million low-income, food insecure2926older adults who are not receiving the home-delivered or2927congregate meals they need.2928    Policymakers should prioritize robust and sustained funding2929for the OAA Nutrition Program to eliminate waitlists and2930dramatically expand the number of seniors the network can2931reach. Congress should also support a strong and timely OAA2932reauthorization to strengthen and expand the full network of2933community-based aging services. We have the infrastructure and2934the knowledge to reach millions more seniors in need. What is2935missing is the federal investment to make it possible.(1)2936Ensuring that no older American without family support is left2937hungry, isolated, or unsafe is not only a moral imperative, it2938is also a cost-effective and fiscally responsible one: Meals on2939Wheels services can be provided to a vulnerable senior for an2940entire year for roughly the same cost as one day in the2941hospital or twelve days in a nursing home.(1)29422943    Question:29442945    For those seniors who do have family members, either as2946part of their immediate household or who reside long-distance,2947how do we as policymakers structure and resource available2948programs and services to alleviate the need for families to2949provide hidden unpaid caregiving?29502951    Response:29522953    Family caregiving is often invisible to policymakers, yet2954its scale and economic weight are enormous. Family caregivers2955provided over $1 trillion in economic value in 2024 through295649.5 billion hours of caregiving, a dramatic increase from the2957$350 billion estimated in 2006.(3) According to the AARP and2958the National Alliance for Caregiving's Caregiving in the US29592025 report, 63 million Americans are caregivers, representing2960nearly one in four adults. Of these, 29% are sandwich2961generation caregivers supporting both children and adults, half2962report a negative financial impact due to caregiving, and one2963in five caregivers cannot afford basic needs like food.(4) The2964workforce consequences are significant: sandwich generation2965caregivers are 5.7% less likely to participate in the labor2966force and, for those employed, work five hours less per week2967compared to non-caregiving workers, with more pronounced2968effects on women.(5) These are not marginal hardships. They are2969widespread, measurable, and addressable through smarter public2970investment.2971    For families with aging loved ones living in the same2972household, the daily demands of caregiving compound the2973pressures of work and child-rearing in ways that can become2974unsustainable. For those providing long-distance care, the2975challenges are different but equally serious: the inability to2976be physically present creates anxiety, generates costly and2977disruptive travel, and leaves seniors vulnerable in the gaps2978between visits. In both cases, community-based services like2979Meals on Wheels serve as a critical bridge. They provide2980regular nutritious meals, conduct wellness and safety checks,2981offer social connections and make referrals to other health and2982supportive services. These community-based programs provide2983daily, consistent support that family caregivers cannot always2984provide due to work, distance, or their own family2985obligations.(1)2986    A study published in Innovation in Aging by researchers2987from Brown University and Johns Hopkins University, conducted2988through in-depth interviews with 85 clients and 14 caregivers2989across 13 Meals on Wheels programs, documented the concrete2990ways in which Meals on Wheels alleviates caregiver burden.2991Although clients and caregivers reported that Meals on Wheels2992eased some caregiving burden, they also identified substantial2993unmet needs. Caregivers reported substantial burden and2994suggested that they would benefit from assistance with2995financial and care planning, identification of additional2996available formal support, and access to respite care.(6) A2997companion study published in JAMA Network Open and funded by2998the Patient-Centered Outcomes Research Institute found that2999home-delivered meals relieved stress and financial strain on3000family caregivers, giving them more time for their own health3001and well-being.(7) For sandwich generation caregivers3002especially, Meals on Wheels can be the difference between being3003able to maintain employment and being forced to reduce hours or3004exit the workforce, with long-term economic consequences for3005families and the broader economy.(1)3006    Meals on Wheels programming can also support the health and3007wellbeing of caregivers. Only 36% of caregivers report very3008good mental health, and 27% say their caregiving3009responsibilities cause them a great deal of stress.(5) Local3010providers that offer predictability and reliability in meeting3011the daily needs of elderly loved ones allow caregivers to focus3012more fully on their work, their children, and quality time with3013their older relative, rather than operating in a constant state3014of worry and crisis management.(1) The story of Claire in3015Thousand Oaks, California, a homebound senior who lost her3016husband and lives hundreds of miles from family, illustrates3017this clearly. Her Meals on Wheels volunteer became not just a3018meal deliverer but a source of genuine social connection and3019emotional support, providing her distant family with the3020reassurance that someone was present and caring for her.(1)3021    To alleviate the burden of hidden unpaid caregiving more3022significantly, policymakers should act on several fronts:3023    First, Meals on Wheels America urges Congress to adequately3024fund the OAA Nutrition Program to meet growing demand,3025eliminate waitlists, and ensure that the network has the3026capacity to reach the estimated 2.5 million low-income, food3027insecure older adults not currently receiving the meals they3028need.(1)3029    Second, policymakers should prioritize effective caregiver3030supports and resources. These include financial assistance, tax3031credits and respite care. Meals on Wheels America recommends3032investment in expanded access to information about local3033programs; many caregivers remain unaware of the community3034resources available to them.8 Research on state-level3035approaches has found that the most effective state strategies3036to support family caregivers of older adults include financial3037support for working caregivers, caregiver assessment and care3038planning, and expanded access to respite care, particularly for3039those at elevated risk of institutionalization.(9)3040    Third, community-based aging services must be made widely3041available, easily accessible, and sufficiently resourced so3042that families are not forced into crisis-driven care decisions,3043such as premature and costly institutionalization. Meals on3044Wheels services can be provided to a vulnerable senior for an3045entire year for roughly the same cost as one day in the3046hospital or twelve days in a nursing home.(1) The cost of not3047investing in these services falls on families, on caregivers,3048and ultimately on taxpayers.30493050    Question:30513052    What are some of the health outcomes related to isolated3053older adults receiving home-delivered meals?30543055    Response:30563057    Older adults enrolling in Meal on Wheels have high rates of3058food insecurity, nutritional risk, loneliness and chronic3059conditions factors that are associated with poorer health3060outcomes, increased health care utilization, and higher health3061care costs.(10) Recent research from the Deliver-EE clinical3062trial found that seniors accessing Meals on Wheels services3063experience food insecurity at rates five times higher than3064typical U.S. older adults (47% versus 9%), and many report3065financial strain and functional limitations that make obtaining3066and preparing nutritious food difficult.(11) Additionally, more3067than half of participants lived alone, and approximately one in3068five reported frequently feeling isolated from others.3069    Meals on Wheels services help to effectively address food3070insecurity, malnutrition, poor diet quality and loneliness3071while reducing the likelihood of falls and other household3072injuries. These services lead to reduced need for costly3073hospital and nursing home care and improve the health and well-3074being of the older adults served. Regular meal delivery and3075contact with volunteers or staff also provide meaningful social3076connections for isolated older adults. The consequences of3077social isolation are substantial. Adjusted for inflation to3078August 2025 dollars, social isolation among older adults is3079associated with an estimated $9 billion in Medicare spending3080annually. This estimate was calculated using the U.S. Bureau of3081Labor Statistics Consumer Price Index Inflation Calculator and3082is based on the original estimate of $6.7 billion in excess3083Medicare spending attributable to social isolation in 20123084dollars.(12)3085    The impact of these services is reflected in participant-3086reported outcomes. According to the 2023 National Survey of3087Older Americans Act Participants, 79% of home-delivered meal3088participants reported that the meals helped improve their3089health, and 91% reported that the meals helped them live3090independently in their own homes.(13)30913092    Question:30933094    How have hospitalization rates or nursing home admissions3095been affected by nutrition assistance, and how does that3096demonstrate the cost-effectiveness of federal investment in3097these programs relative to institutional care?30983099    Response:31003101    Investment in community-based nutrition assistance prevents3102far more costly downstream expenses. This conclusion is3103supported by peer-reviewed studies, national surveys and the3104lived experiences of millions of seniors and their families.3105    Meals on Wheels America's 2023 report, The Case for Meals3106on Wheels: An Evidence-Based Solution to Senior Hunger and3107Isolation, analyzed 38 studies spanning 1996 to 2023 and found3108that Meals on Wheels programs consistently reduce healthcare3109utilization and costs, falls, nursing home use, and social3110isolation.(14) The program does so while also improving food3111security, diet quality, nutritional status, and seniors'3112ability to age in place.(1) Multiple studies reviewed in the3113report found that participants needed fewer emergency room3114visits and experienced fewer hospitalizations and readmissions.3115Access to home-delivered meals also allowed seniors to remain3116in their homes rather than transfer to nursing facilities, and311792% of home-delivered meal participants report that meals help3118them continue to live independently.(1) These improvements3119represent a systematic reduction in the most expensive forms of3120care our health system provides.3121    Broader research literature on nutrition assistance and3122institutional care reinforces these findings. A Johns Hopkins3123University study published in BMC Geriatrics examining nearly312478,000 older adults dually eligible for Medicaid and Medicare3125in Maryland found that SNAP participants had a 23% reduced odds3126of nursing home admission compared to nonparticipants, and that3127an additional $10 of monthly SNAP assistance was associated3128with lower odds of admission and fewer days of stay among those3129admitted. The implications are significant: modest food3130assistance investments at the front end translate directly to3131avoided nursing home costs, which are borne primarily by3132Medicaid.3133    Medically tailored meals, which are offered by many local3134Meals on Wheels providers, are associated with a 49% reduction3135in inpatient admissions, 72% fewer admissions to skilled3136nursing facilities, and 16% lower health care costs compared to3137individuals with similar demographic characteristics who did3138not receive them.(15) A landmark 2025 study published in Health3139Affairs by researchers at Tufts University estimated that3140nationwide implementation of medically tailored meals could3141save approximately $23 billion in health care costs in the3142first year alone and prevent more than 2.6 million3143hospitalizations annually related to complications from3144diabetes, heart disease, and cancer. Overall, the researchers3145found that medically tailored meal programs were linked to a314647% reduction in annual hospitalizations and a 19.7% reduction3147in annual healthcare spending.(16) Research from Morrison3148Healthcare further found that participants in medically3149tailored meal programs saw a 30% decrease in emergency3150department visits and a 37% decrease in inpatient length of3151stay, with average savings of $12,046 in healthcare costs per3152participant while enrolled.(17)3153    The cost comparison between nutrition assistance and3154institutional care is profound. Meals on Wheels can serve a3155vulnerable senior for an entire year for roughly the same cost3156as a single day in the hospital or twelve days in a long-term3157care facility.(1) Among individuals receiving medically3158tailored meals, the average monthly medical expenditures are315940% lower than for a matched group not receiving meals, $8433160versus $1,413 per month. Senior malnutrition alone costs an3161estimated $76 billion a year in health care expenses. Older3162adult falls cost the health care system an estimated $1003163billion annually, with most of that cost paid by Medicare.3164Research demonstrates that social isolation among older adults3165leads to an extra $6.7 billion in Medicare spending per year,3166comparable to the costs associated with having high blood3167pressure or arthritis.(1) Each of these conditions,3168malnutrition, falls, and isolation, is directly addressed by3169the Meals on Wheels model, which provides nutritious meals,3170safety checks at the point of delivery and regular human3171contact for seniors who would otherwise have none.3172    Widening shortfalls in federal OAA Nutrition Program3173funding have exacerbated the challenges of a rapidly growing3174senior population and rising costs for food, fuel and program3175operations, leading to widespread and mounting unmet need. The3176number of older adults experiencing low or very low food3177security quadrupled between 1999 and 2023. During this same3178period, the purchasing power of OAA Nutrition Program funding3179adjusted to 2024 dollars declined. The OAA Nutrition Program is3180currently serving roughly the same number of seniors in 2024 as3181it did in 1999, despite a dramatically larger and more3182vulnerable senior population.(1) One in three local Meals on3183Wheels programs maintains a waitlist, with seniors waiting an3184average of four months for vital meals. Satish, a senior in3185Sanford, Florida, waited three years on a waitlist of more than3186400 people before receiving services. During that time his3187health deteriorated, his energy dwindled, and his world shrank.3188The cost of that three-year delay in terms of health decline,3189potential hospitalizations, and reduced independence almost3190certainly exceeded by a wide margin what it would have cost to3191him with Meals on Wheels services from the start.(1)3192    The failure to provide adequate federal funding for Meals3193on Wheels services results in significant downstream costs for3194seniors, family caregivers and taxpayers. Seniors who do not3195receive nutrition assistance, safety checks, and social3196connection are more likely to be at risk for falls,3197malnutrition, food insecurity, diet-related chronic diseases,3198social isolation and loneliness and the cascading challenges3199associated with these conditions. They are more likely to face3200emergency room visits, hospitalizations and premature nursing3201home placements. The costs for these situations are borne by3202Medicare, Medicaid, families, and taxpayers at rates profoundly3203higher than the modest costs of the community-based3204interventions that could have prevented them. Meals on Wheels3205services are an essential, cost-effective and fiscally3206responsible investment.(1)32073208    Question:32093210    How do restrictive SNAP work requirements fail low-income3211sandwich generation?3212    Response:32133214    The core problem with restrictive SNAP work requirements3215for sandwich generation caregivers is that the program does not3216consistently or clearly account for the realities of unpaid3217elder caregiving. The One Big Beautiful Bill Act, enacted in3218July 2025, made significant changes to SNAP work requirements,3219including raising he upper age threshold for work requirements3220from 54 to 64, and changing the caregiver exemption to only if3221the youngest child in the household is under age 14, down from3222the previous threshold of under age 18.(18) The Congressional3223Budget Office estimates that the law's SNAP reductions,3224approximately $187 billion over 10 years, will result in3225roughly four million people losing SNAP benefits.(19) These3226changes create particular challenges for low-income sandwich3227generation caregivers, who are simultaneously caring for3228children and aging relatives.(1)3229    While some caregivers may be able to seek exemptions or3230demonstrate that caregiving responsibilities satisfy work3231requirement obligations, doing so often requires navigating3232confusing and cumbersome state specific administrative3233processes and documentation requirements.(20) The statutory3234framework explicitly recognizes caregiving for young children3235but provides far less direct recognition for unpaid elder3236caregiving, despite its substantial time commitment and3237economic impact.(21) 16 million Americans provide unpaid care3238to aging loved ones while also raising children or supporting3239younger family members. These caregiving responsibilities often3240result in lost wages, reduced retirement savings, and adverse3241physical and mental health outcomes, including physical strain,3242emotional stress, and social isolation.(1) For many low-income3243caregivers, SNAP helps offset income lost because of caregiving3244responsibilities. When access to benefits becomes contingent on3245work requirements that do not readily account for those3246responsibilities, caregivers may face difficult choices between3247maintaining food assistance, meeting administrative requirement3248and continuing to provide essential care for aging family3249members.3250    The threat to seniors is direct and serious. Meals on3251Wheels functions as a partnership with family caregivers, not a3252replacement for them, providing regular wellness and safety3253checks, social connection, referrals to transportation and3254health care resources, and an early warning system when health3255or safety concerns arise.(1) This system depends on caregivers3256remaining able to provide some baseline level of informal3257support: coordinating care, checking in, being available for3258emergencies, and supplementing meal delivery on days when Meals3259on Wheels doesn't deliver. If SNAP work requirements3260destabilize the financial footing of low-income sandwich3261generation caregivers, forcing them into more hours of paid3262work to maintain eligibility, the time and energy they devote3263to their aging relatives diminishes and the informal support3264network surrounding a senior can fray quickly.(1) New SNAP work3265requirements now include previously exempt individuals ages 553266to 64, and for many seniors, these changes come at a time when3267fixed incomes and rising costs already make it difficult to3268consistently afford food and healthcare, resulting in greater3269barriers to accessing nutrition assistance.3270    The Meals on Wheels network is already badly strained,3271making additional pressure from SNAP cuts especially dangerous.3272One in three local Meals on Wheels providers maintains a3273waitlist, with seniors waiting an average of four months for3274vital meals and in some cases two or more years. There are an3275estimated 2.5 million low-income, food insecure older adults3276not currently receiving the home-delivered or congregate meals3277they need.(1) Meals on Wheels America has warned that if more3278older Americans lose access to SNAP and are at risk of food3279insecurity and malnutrition, it will put greater pressure on3280senior nutrition providers that are already struggling to keep3281up with existing demand. Meals on Wheels providers do not have3282the resources to address increased need without significant3283additional federal investment.(3)3284    Restrictive SNAP work requirements fail low-income sandwich3285generation caregivers because they treat unpaid elder3286caregiving as economically invisible, fail to count it as3287qualifying work, ignore the income losses it causes, and risk3288weakening family supports in place for aging loved ones. Meals3289on Wheels services and family caregivers are critical3290complementary supports that bolster the health, well-being and3291independence of vulnerable older adults, and policies that3292undermine one will inevitably harm both.(1)32933294Sources & Citations329532961.      Josh Protas, Chief Advocacy and Policy Officer, Meals3297on Wheels America. Testimony for "Caught in the Middle:3298Supporting Families in the Sandwich Generation." United States3299Senate Special Committee on Aging, May 13, 2026.330033012.      Meals on Wheels America. "Meals on Wheels America3302Issues Statement on House of Representatives' Passage of H.R.33031." May 22, 2025. https://www.mealsonwheelsamerica.org/news/3304meals-on-wheels-america-issues-statement-on-house-of-3305representatives-passage-of-h-r-1/330633073.      Meals on Wheels America. "Findings From New Study3308Reinforce That Home-Delivered Meals Provide Critical Health and3309Social Benefits to Older Adults and Caregivers." September 30,33102025. https://www.mealsonwheelsamerica.org/news/findings-from-3311new-study-reinforce-that-home-delivered-meals-provide-critical-3312health-and-social-benefits-to-older-adults-and-caregivers/331333144.      AARP and National Alliance for Caregiving. Caregiving3315in the US 2025. Washington, DC: AARP, July 24, 2025. https://3316www.aarp.org/pri/topics/ltss/family-caregiving/caregiving-in-3317the-us-2025/331833195.      "Impacts of Sandwich Caregiving on Labor Market3320Outcomes." Innovation in Aging, December 31, 2025. https://3321www.ncbi.nlm.nih.gov/pmc/articles/PMC12763280/332233236.      Gadbois, E., Stetten, N., Samuel, L., et al. "Meals on3324Wheels and Family Caregiving: Benefits Received and Unmet3325Needs." Innovation in Aging, December 31, 2025. https://3326academic.oup.com/innovateage/article/9/Supplement--2/3327igaf122.479/8412863332833297.      Meals on Wheels America. "Findings From New Study3330Reinforce That Home-Delivered Meals Provide Critical Health and3331Social Benefits to Older Adults and Caregivers." September 30,33322025. https://www.mealsonwheelsamerica.org/news/findings-from-3333new-study-reinforce-that-home-delivered-meals-provide-critical-3334health-and-social-benefits-to-older-adults-and-caregivers/333533368.      Meals on Wheels America. "Findings From New Study3337Reinforce That Home-Delivered Meals Provide Critical Health and3338Social Benefits to Older Adults and Caregivers." September 30,33392025. https://www.mealsonwheelsamerica.org/news/findings-from-3340new-study-reinforce-that-home-delivered-meals-provide-critical-3341health-and-social-benefits-to-older-adults-and-caregivers/334233439.      "Moving Toward Best Practices in State Approaches to3344Supporting Family Caregivers of Older Adults." The Milbank3345Quarterly, 2019. https://www.ncbi.nlm.nih.gov/pmc/articles/3346PMC6840424/3347334810.      Bernard K, Gadbois E, Clark M, et al. Craving More3349Than Meals: Social Isolation Among Older Adults on Meals on3350Wheels Waitlists. Innovation in Aging.3351335211.      Samuel L, Gadbois E, Bernard K, et al. The Role of3353Food Insecurity in Relation to Meals on Wheels Participation.3354Innovation in Aging. 20253355335612.      Flowers, L., Houser, A., Noel-Miller, C., Shaw, J.,3357Bhattacharya, J., Schoemaker, L., & Farid, M. (2017). Medicare3358Spends More on Socially Isolated Older Adults. AARP Public3359Policy Institute.3360336113.      Administration for Community Living. 2023 National3362Survey of Older Americans Act Participants.3363336414.      Meals on Wheels America. The Case for Meals on Wheels:3365An Evidence-Based Solution to Senior Hunger and Isolation.3366September 2023. Available at: Meals on Wheels America Research3367Report.3368336915.      Center for Health Care Strategies. "Medically Tailored3370Meals." October 10, 2025. http://www.chcs.org/resource/3371medically-tailored-meals/3372337316.      Deng, S., Hager, K., Wang, L., et al. "Estimated3374Impact of Medically Tailored Meals on Health Care Use and3375Expenditures in 50 US States." Health Affairs, April 2025.3376https://www.healthaffairs.org/doi/10.1377/hlthaff.2024.013073377337817.      Morrison Healthcare. "Medically Tailored Meals3379Decrease Healthcare Costs, ED Visits and Inpatient Stays."3380September 30, 2025. https://www.morrisonhealthcare.com/case-3381studies/medically-tailored-meals-decrease-healthcare-costs-ed-3382visits-and-inpatient-stays/3383338418.      Congressional Research Service, Supplemental Nutrition3385Assistance Program (SNAP) and Related Nutrition Programs in3386P.L. 119-21: An Overview (R48552)3387338819.      Congressional Budget Office. Cost Estimate for H.R. 1,3389One Big Beautiful Bill Act. 2025.3390339120.      U.S. Department of Agriculture, Food and Nutrition3392Service. Supplemental Nutrition Assistance Program (SNAP) Work3393Requirements and Exemptions Guidance.3394339521.      Capital Area Food Bank. "Senior Hunger Conference33962026: Turning Insights Into Action." May 18, 2026. https://3397www.capitalareafoodbank.org/blog/2026/05/18/senior-hunger-3398conference-2026-turning-insights-into-action/33993400                 U.S. Senate Special Committee on Aging34013402 "Caught in the Middle: Supporting Families in the Sandwich Generation"34033404                              May 13, 202634053406                        Questions for the Record34073408                             Rebecca Preve34093410                  Ranking Member Kirsten E. Gillibrand34113412    Question:34133414    How would cuts to Home and Community-Based Services create3415added stress for Area Agencies on Aging?34163417    Response:34183419    Cuts to Medicaid under H.R. 1 are likely to affect Area3420Agencies on Aging indirectly but significantly, especially3421through pressure on home- and community-based services (HCBS),3422care coordination programs, and state aging-service budgets.3423Anticipated reductions will trigger a cascade: narrowed3424Medicaid eligibility will reduce service availability, loss of3425coverage will increase unmet need, and both pressures will3426intensify demand on an already underfunded system. Although3427AAAs are primarily funded through the Administration for3428Community Living and the Older Americans Act at the federal3429level, they are also dependent upon state and local funding3430streams that will be impacted by Medicaid reductions. This is3431occurring at a time when the older population is rapidly3432increasing, and there has been a continual loss of3433institutional settings nationally.3434    An important additional concern is that AAA networks are3435already underfunded relative to existing community needs. Even3436before any Medicaid reductions, many AAAs struggle to meet the3437needs of older adults and family caregivers who are not3438Medicaid-eligible, but still cannot afford private long-term3439care, transportation, respite services, or in-home supports.3440Waiting lists for all services under the AAA network continue3441to grow, as funding has not kept pace with inflation or3442population growth. If more older adults lose Medicaid coverage,3443lose HCBS access, or turn to AAAs for help after reductions in3444state-funded services, AAAs may face increased caseloads,3445longer waitlists, increased caregiver burnout and crisis, and3446individuals being unsafe in home and community-based settings.3447    Organizations focused on aging and disability policy3448believe that as HCBS is not a federally required program, it3449will be one of the first targeted for cuts, as the focus will3450be on mandated services.3451    Several analyses of H.R. 1 note that states may respond to3452federal Medicaid reductions by cutting provider payments,3453narrowing eligibility criteria, capping waiver slots available,3454and reducing any optional long-term services and supports.3455    The most immediate operational pressures are expected to3456begin in late 2026 and 2027, when new eligibility checks and3457Medicaid reporting requirements phase in. (benefitsusa.org)34583459    Question:34603461    In what ways does Medicaid's program structure and existing3462processes work to prevent fraud among beneficiaries?34633464    Response:34653466    Medicaid fraud in the United States is monitored through a3467layered system involving federal agencies, state Medicaid3468programs, private contractors, managed care organizations, data3469analytics systems, audits, and criminal investigations. Most3470anti-fraud efforts focus on providers rather than3471beneficiaries, because provider fraud accounts for the largest3472financial losses.3473    The key components to fraud prevention include federal3474oversight under the Centers for Medicare and Medicaid Services3475(CMS), the Office of the Inspector General (HHS-OIG), the3476Department of Justice (DOJ), and the Federal Bureau of3477Investigation (FBI). These agencies work to oversee program3478integrity requirements for the states, conduct audits and3479investigations, prosecute civil and criminal cases, and3480investigate large-scale healthcare fraud schemes. The federal3481government also operates the Medicaid Integrity Program,3482utilizing contractors to audit providers, review billing3483patterns, and identify suspicious claims.3484    Additionally, each state has a Medicaid Fraud Control Unit,3485usually housed in the state attorney general's office. These3486specialized units investigate provider fraud, patient abuse and3487neglect in facilities, and financial exploitation in Medicaid-3488funded care settings. These units are jointly funded by federal3489and state governments and recover billions each year in3490settlements, prosecutions, and penalties. States are also3491conducting random audits and payment reviews.3492    These state and federal agencies also use predictive3493analytics and artificial intelligence to find unusual billing3494behavior, such as extreme number of patients, duplicate claims,3495excessive billing for certain procedures, billing for deceased3496patients and geographic outliers.3497    CMS's Fraud Prevention System uses large claims databases3498and algorithmic pattern detection similar to financial fraud3499monitoring. Commonly targeted fraud in this system are3500typically phantom billing, upcoding, kickback schemes, identity3501theft, inappropriate and unnecessary durable medical equipment,3502and fraudulent visits. Again, the overwhelming majority of3503fraud is on a provider level, not an individual enrollee.3504    Oversight is also mandated to be provided by Managed Care3505Organizations, as many Medicaid recipients are enrolled in MLTC3506plans. MLTCs are required to provide utilization review,3507provider credentialing, claims audits, and fraud referrals.3508States then monitor MLTCs to determine whether they are3509complying with anti-fraud regulations.3510    Fraud is also targeted through employee whistleblowers,3511patient complaints, auditors, and law enforcement. The False3512Claims Act encourages whistleblowers to come forward by3513allowing them to file lawsuits and be provided a portion of3514recovery funds if fraud is identified. There is an additional3515fraud reporting portal available through HHS-OIG.35163517    Question:35183519    How might these claims of fraud and demand for rigorous3520review of services undermine access to HCBS, and how would that3521impact the families that rely on this essential support?35223523    Response:35243525    Claims of widespread Medicaid fraud - especially when3526paired with demands for more aggressive eligibility reviews,3527service authorizations, or utilization controls - can3528unintentionally undermine access to home- and community-based3529services (HCBS), even for people who are fully eligible and3530legitimately need care.3531    HCBS programs already operate with extensive oversight,3532documentation requirements, care assessments, and periodic3533eligibility reviews. When additional layers of scrutiny are3534added in response to fraud concerns, the practical effect is3535often slower access to services, increased administrative3536burden, and greater instability for older adults, people with3537disabilities, and family caregivers. At the individual level3538these impacts can include delays in approving services or3539renewing eligibility, interruptions of personal care hours,3540additional paperwork and reassessments, stricter prior3541authorizations, increases in denials, and provider withdrawal3542from Medicaid due to administrative burden and lower3543reimbursements.3544    For families, these disruptions can be significant because3545HCBS often functions as the support system that allows an older3546adult or person with a disability to remain safely at home3547rather than enter institutional care. Families losing services3548are faced with increased unpaid caregiver burden, lost income3549due to leaving work or taking time off, social isolation and3550loneliness, more frequent emergency department utilization due3551to poor health outcomes, and a higher risk of nursing home3552placement.3553    The burden is especially severe for middle- and lower-3554income families who do not qualify for extensive private-pay3555care but also cannot absorb sudden caregiving costs on their3556own. Additionally, many of these services that are available3557for non-Medicaid eligible individuals through the AAA network3558are waitlisted due to the significant increase in demand.3559    Rural communities can be particularly vulnerable because3560provider networks are already thin. Additional administrative3561requirements may cause home care agencies or direct care3562workers to stop participating in Medicaid altogether, further3563reducing available services.3564    There is also concern that broad political narratives3565emphasizing fraud can create public skepticism around Medicaid3566and HCBS programs generally, even though many oversight systems3567already exist and most beneficiaries rely on services3568appropriately and legitimately. In practice, heightened anti-3569fraud systems sometimes identify procedural or paperwork issues3570rather than intentional abuse, yet beneficiaries can still lose3571services during reviews or appeals.3572    For Area Agencies on Aging and disability organizations,3573this often translates into more crisis calls from family3574members, increased demand for caregiver supports, longer3575waitlists, and more demand for appeal and enrollment3576assistance.3577    In many cases, the result is not simply reduced spending,3578but a shift of care responsibilities from publicly supported3579systems onto unpaid family caregivers - most often spouses,3580adult children, and other relatives.35813582    Question:35833584    Based on your years of experience working with older adults3585and their families in New York state, can you discuss the3586importance of New York's strategic plan for supporting family3587caregivers?35883589    Response:35903591    The importance of New York's strategic plan for supporting3592family caregivers is rooted in a simple reality: family3593caregivers are the backbone of the long-term care system, and3594without stronger support for them, both families and public3595systems face growing strain. Having a State Strategic Plan for3596Aging elevates the conversation to the forefront of all3597government agencies and future planning, and directly addresses3598the two most persistent systemic barriers facing older adults3599and people with disabilities: ageism - the devaluation of older3600adults as contributing members of society - and ableism, the3601systemic exclusion of people with disabilities from equitable3602access to services and opportunities.3603    In communities across New York family caregivers routinely3604provide transportation, medication management, personal care,3605meal preparation, supervision, financial coordination, and3606emotional support for aging relatives. The majority of this3607care is unpaid, often provided while caregivers are also3608balancing employment, raising children, or managing their own3609health concerns.3610    Through decades of work with older adults and caregivers, I3611have witnessed many families reach crisis points not because3612they are unwilling to provide care, but because they lack3613adequate support, respite, training, financial stability, or3614access to services.3615    New York's Master Plan for Aging included family caregivers3616because it recognizes caregiving as a public health, workforce,3617and economic issue - not simply a private family3618responsibility. The plan helps establish a coordinated3619statewide framework to expand respite and caregiver supports,3620improve access to information and navigation, increase3621caregiver training and mental health support, address workforce3622shortages in the home, improve coordination across systems, and3623allow older adults to remain in homes and communities for as3624long as possible.3625    The plan is especially significant given New York's aging3626population and growing demand for home- and community-based3627services (HCBS). As more older adults prefer to age at home,3628family caregivers increasingly fill gaps created by workforce3629shortages, rising long-term care costs, and limited3630institutional capacity.3631    From the perspective of aging service providers, strategic3632caregiver investments are also cost-effective. Supporting3633caregivers can help delay or prevent nursing home placement,3634reduce emergency department utilization, and lower overall3635Medicaid expenditures - making caregiver support one of the3636highest-return investments a state can make in its long-term3637care system.3638    Importantly, New York's caregiver strategy acknowledges3639that caregiver support is not only about preventing hardship -3640it is about preserving dignity, independence, and quality of3641life for older adults and the people who care for them.3642    As Medicaid, HCBS, and aging-service systems face3643increasing pressure nationally, a comprehensive caregiver3644strategy gives New York a framework for responding proactively3645rather than reactively to the growing demands placed on3646families and community-based aging networks.36473648    Question:36493650    How would other states benefit from drafting similar plans3651like I am working to do with my Strategic Plan for Aging Act?36523653    Response:36543655    Other states could benefit significantly from developing3656strategic plans like New York's because these approaches3657encourage states to prepare systematically for the realities of3658an aging population rather than responding only after crises3659emerge.3660    A statewide aging strategy creates a coordinated framework3661for addressing the interconnected challenges facing older3662adults, family caregivers, healthcare systems, workforce3663development, housing, transportation, nutrition, and long-term3664care. Without that kind of planning, aging services are often3665fragmented across agencies and programs, making it difficult3666for families to navigate support or for states to respond3667efficiently to growing need.3668    States that adopt comprehensive aging plans could benefit3669in key ways such as better coordination between all systems,3670improving support for family caregivers, making the case for3671investments into HCBS services, identifying gaps in services3672and workforce, and more efficiently using public resources.3673    A strategic plan also helps states shift from a reactive3674model to a preventive one. Instead of focusing primarily on3675institutional care after someone enters crisis, states can3676invest earlier in caregiver support, home modifications,3677nutrition programs, transportation, dementia services, and3678community-based supports that help older adults remain3679independent longer.3680    Plans modeled after New York's approach can also elevate3681the role of family caregivers as essential partners in long-3682term care policy. Across the country, millions of unpaid3683caregivers provide care that would otherwise fall to Medicaid-3684funded systems or institutional providers. Supporting3685caregivers through respite, training, workplace flexibility,3686and navigation services can improve both family stability and3687system sustainability.3688    Another important benefit is accountability. Strategic3689aging plans establish measurable goals, timelines, and cross-3690agency collaboration, helping states evaluate whether policies3691are improving outcomes for older adults and caregivers.36923693    Question:36943695    How does keeping the Administration for Community Living3696intact ultimately benefit sandwich caregivers?36973698    Response:36993700    Keeping the Administration for Community Living (ACL)3701intact benefits sandwich caregivers because ACL serves as one3702of the primary federal agencies coordinating the programs,3703funding, and infrastructure that help families care for both3704older adults and people with disabilities while also balancing3705work and child-rearing responsibilities. The organization was3706founded specifically for the needs of Older Americans and3707people with disabilities to have a separate and distinct3708representation and support. ACL is also responsible for3709providing State Unit on Aging support, and for providing grant3710funding opportunities for aging and disability populations.3711    ACL helps sustain services such as caregiver support, home3712delivered and congregate meals, transportation, evidence-based3713wellness programs, caregiver education and support groups,3714dementia services, benefits counseling, falls prevention3715programs, elder rights protections, and local AAAs.3716    ACL also plays a unique coordinating role by integrating3717aging and disability policy rather than treating them as3718separate systems. That matters for sandwich caregivers because3719many families navigate multiple overlapping needs at once -3720such as caring for an older parent with dementia while also3721supporting an adult child with disabilities or children with3722behavioral health needs.3723    If ACL were weakened, fragmented, or absorbed into agencies3724without a dedicated aging and disability focus, families could3725face reduced coordination between programs, complicated service3726navigation, inconsistent caregiver supports across states, and3727decreased federal attention to caregiver needs.3728    Keeping ACL intact also supports a broader policy goal:3729shifting care away from expensive institutional settings and3730toward home- and community-based services (HCBS), which most3731older adults prefer and which many family caregivers depend on3732to keep loved ones safely at home.3733    Ultimately, maintaining ACL helps preserve the3734infrastructure that allows sandwich caregivers to continue3735caring for loved ones without carrying the entire burden alone.3736It supports not only older adults and people with disabilities,3737but also the economic and emotional stability of the families3738who care for them every day.37393740    Question:37413742    How might paid, as opposed to unpaid, leave benefits change3743the way caretakers balance their caregiving responsibilities,3744especially if they are in the sandwich generation?37453746    Response:37473748    Paid leave benefits can significantly change how caregivers3749- especially those in the sandwich generation - manage3750caregiving responsibilities because they provide something many3751families currently lack: time without immediate financial3752sacrifice.3753    For sandwich caregivers balancing employment, child-3754rearing, and care for aging parents or relatives, unpaid leave3755often forces impossible choices between maintaining income and3756health insurance vs caring for a loved one, meeting a child's3757needs or protecting their own physical and mental health.3758    Paid family and medical leave can reduce those pressures by3759allowing caregivers to temporarily step away from work while3760still receiving partial or full income replacement. That3761flexibility canmake caregiving more sustainable and reduce the3762likelihood that caregivers will leave the workforce entirely.3763The workforce impact of caregiving is already substantial.3764Recent research from AARP and S&P Global found that:37653766      
67% of working caregivers report difficulty balancing3767jobs and caregiving responsibilities,37683769      
27% reduced work hours or shifted from full-time to3770part-time employment,37713772      
16% turned down promotions,37733774      
13% changed employers;37753776      
and 16% stopped working entirely for a period of time3777because of caregiving demands.37783779    The same research found that caregiving-related stress and3780work disruption are especially severe for people providing high3781levels of care while trying to maintain employment. For3782sandwich-generation caregivers, paid leave may help them attend3783medical appointments, coordinate hospital discharges and home3784care, provide intensive care at home after a medical event, and3785develop a sustainable long-term care plan for a loved one3786without the added pressure of lost wages.3787    Compared with unpaid leave, paid leave can particularly3788benefit middle- and lower-income families who cannot afford3789extended periods without income. While higher-income workers3790may sometimes absorb unpaid time away from work, many3791caregivers live paycheck to paycheck and risk financial3792instability, loss of housing, depletion of retirement accounts,3793and loss of employment.3794    Paid leave may also improve workforce retention and3795productivity. Many caregivers - especially women, who still3796provide a disproportionate share of family caregiving - reduce3797hours, miss advancement opportunities, or exit employment3798altogether because balancing work and caregiving becomes3799unmanageable. Employers often experience increased absenteeism,3800reduced productivity, turnover, and burnout among employees3801managing caregiving responsibilities without adequate support.3802    At the same time, family caregivers provide an enormous3803economic benefit to the country. AARP estimates that family3804caregivers now provide roughly $1 trillion annually in unpaid3805care - labor equivalent to nearly 24 million full-time workers.3806Without stronger caregiver supports, including paid leave, many3807families absorb these costs privately through lost wages,3808reduced retirement savings, and long-term financial insecurity.3809    There are also broader health and social impacts. Research3810consistently shows that caregiving stress contributes to3811increased alcohol and substance use, increased suicidal3812ideation, sleep disruption, caregiver burnout. Notably,3813research indicates that 85% of sandwich generation caregivers3814have at least one adverse mental health impact.3815    In sandwich-generation households, paid leave can also3816reduce intergenerational strain. Caregivers are often3817simultaneously supporting children's educational, emotional,3818and financial needs while managing aging relatives' medical and3819functional needs. Paid leave gives families more flexibility to3820respond to these overlapping responsibilities without forcing3821one set of needs to compete directly against another.3822    Importantly, paid leave recognizes caregiving as a3823legitimate societal and economic responsibility rather than a3824purely private family issue. As the population ages and more3825adults provide care across generations, policies that support3826caregivers increasingly affect workforce participation,3827economic stability, and the long-term sustainability of the3828care system itself.38293830    Question:38313832    How are soaring prices for gas and other essentials3833impacting families who are struggling to care for young3834children and aging relatives?38353836    Response:38373838    Soaring prices for gas, food, housing, utilities,3839prescription medications, and other essentials place3840significant additional pressure on families who are already3841balancing the costs of caring for both young children and aging3842relatives, particularly those in the sandwich generation.3843    Caregiving is already financially demanding, even before3844inflation is factored in. Families caring for children and3845older adults often face overlapping expenses such as3846transportation, childcare, prescription drugs, home heating and3847utilities, groceries, home modifications, medical equipment,3848and loss of wages due to time away from employment.3849    In rural communities, where healthcare providers and3850services may be located long distances away, transportation3851costs can become a major barrier to care access. Families may3852postpone appointments, reduce social visits, or struggle to3853maintain consistent caregiving routines because of travel3854expenses.3855    At the same time, the cost of essentials continues to rise.3856Families may find themselves making difficult tradeoffs between3857paying for childcare, filling prescriptions, purchasing3858groceries, paying utility bills, or being able to hire respite3859or home care workers. These costs also intensify stress, as3860many Older Americans are on very fixed incomes and are forced3861to rely on caregivers for financial support.3862    Parents and caregivers may feel constant pressure trying to3863meet the needs of multiple generations simultaneously while3864watching household expenses increase faster than wages or3865benefits.3866    These economic pressures also affect workforce3867participation and productivity. Some caregivers take on3868additional jobs, reduce hours to manage caregiving, or leave3869employment altogether when care responsibilities and costs3870become unmanageable. Employers may see increased absenteeism3871and burnout among workers balancing caregiving and financial3872stress.3873    Inflation can also drive increased demand for publicly3874supported services such as nutrition, transportation, caregiver3875respite, energy assistance, and Medicaid-funded services - all3876of which are already strained by significant waitlists.3877    For sandwich-generation families, rising costs do not3878affect only one part of life - they create cumulative pressure3879across caregiving, employment, healthcare, transportation, and3880household stability all at once. Policies that support3881affordable caregiving services, transportation access, paid3882leave, caregiver tax relief, and home- and community-based3883services can help reduce some of that strain and allow families3884to continue caring for loved ones safely and sustainably.38853886                        Senator Raphael Warnock38873888    Question:38893890    More than 47,000 older adults and individuals with3891disabilities in Georgia rely on Medicaid Home and Community-3892Based Services (HCBS) for personal care assistance, meal3893delivery, and home health services. Family caregivers,3894including the sandwich generation, also depend on HCBS for3895critical respite care and training services. However, on July38964, 2025, President Trump signed the One Big Beautiful Bill Act3897(OBBBA) into law, which cut nearly $1 trillion in Medicaid3898funding for the next several years.3899    Ms. Preve, how will cuts to Medicaid from OBBBA affect3900older Georgians' and sandwich caregivers' access to HCBS?39013902    Response:39033904    If Medicaid funding is reduced substantially, the impact on3905HCBS for older Georgians and sandwich caregivers is usually3906immediate and structural rather than gradual.3907    In Georgia, where tens of thousands of older adults and3908people with disabilities rely on Medicaid HCBS for personal3909care, meal delivery, case management, and home health supports,3910the first pressure point is typically eligibility and access.3911States facing reduced federal Medicaid funding often respond by3912tightening waiver eligibility, limiting enrollment slots, or3913creating waiting lists for HCBS programs. That means some3914individuals who are already eligible may experience delayed3915services, reduced hours of care, or loss of certain supportive3916services like respite care.3917    For older adults, this can directly affect the ability to3918remain safely at home. HCBS is often what prevents premature3919nursing home placement. When those services are reduced,3920families frequently must step in to fill the gap. That shifts3921responsibility from paid professional support onto unpaid3922family caregivers.3923    This creates a ripple effect across households. Sandwich3924caregivers, who are already balancing children, work, and elder3925care, often experience the greatest strain because they have3926the least flexibility in time and resources. Even small3927reductions in HCBS can force difficult tradeoffs between3928employment, childcare, and elder care responsibilities.3929    There is also a broader system effect: when HCBS becomes3930less available, demand increases for hospitals, emergency3931departments, and institutional long-term care, which are far3932more expensive settings. Families often experience this not as3933a policy change, but as a crisis when home care suddenly3934becomes unavailable or insufficient.3935    From a policy perspective, HCBS is one of the most3936sensitive areas of Medicaid because it is optional for states3937but essential for families. This means when budgets tighten, it3938is often one of the first areas to face constraints, even3939though it is also one of the most cost-effective ways to3940support aging in place and reduce institutional care.39413942    Question:39433944    How will Georgians' access to these services compare to3945individuals in states like New York that have expanded3946Medicaid?39473948    Response:39493950    In general, Georgians' access to Home and Community-Based3951Services (HCBS) is more constrained than in states like New3952York that have more expansive Medicaid programs and a stronger3953policy commitment to long-term services and supports in the3954community.3955    In Georgia, Medicaid HCBS is largely structured through3956waiver programs, which means services are typically capped with3957enrollment limits, subject to waitlists, and are more narrowly3958targeted to individuals meeting strict functional and financial3959criteria. Even when someone qualifies clinically, services may3960be dependent upon the availability of a waiver slot.3961    By contrast, states like New York have made more extensive3962use of Medicaid expansion and long-term care investment in3963community-based services. New York has a broader infrastructure3964for HCBS delivery, including larger waiver capacity, stronger3965integration with managed long-term care programs, and more3966robust connections between Medicaid and aging-service systems.3967    For families, especially sandwich-generation caregivers,3968these differences matter in day-to-day life. In Georgia,3969limited HCBS availability can mean families more frequently3970have to fill gaps themselves when formal services are not3971available or are insufficient. That can increase unpaid3972caregiving burdens, workforce disruption, and reliance on3973informal support networks.3974    The broader policy distinction is that states with Medicaid3975expansion and stronger HCBS investments tend to treat home-3976based care as a core part of long-term care infrastructure,3977while states with more constrained Medicaid structures often3978rely more heavily on eligibility limits and capped waiver3979programs to manage costs.3980[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]39813982=======================================================================39833984                       Statements for the Record39853986=======================================================================3987[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]39883989                               [all]