Hearings to examine Supporting Families in the Sandwich Generation.

the uss special community of nature will now come to order right now across the country millions of americans are being squeezed from both sides uh they they are raising children uh working full time at the same time caring for an aging parent who needs them and i want to thank senator kim for uh for talking he talks about this quite a bit we call this group the sandwich generation and washington has not done nearly enough to recognize them support them or simply even say we see you the numbers are striking an estimated eleven million americans are simultaneously caring for a child and an older adult many are doing this while working full time but too many find that balance impossible most are exhausted overwhelmed, and doing it all quietly without complaint. One in five family caregivers have has reduced their work hours or left the workforce entirely to provide care. That is not just personal sacrifice, that is lost wages and lost retirement savings that compounds over a lifetime. The estimated economic value of unpaid family caregiving in this country is six hundred billion dollars every year. These are sons, daughters, and spouses who have stepped up because they love someone. Love doesn't pay the bills. Right now our tax code, our federal programs, and our social infrastructure hasn't kept pace with what these families actually need. That's why I'm proud to be working on multi-generational home caregiver credit act, which will provide meaningful tax relief to family caregivers who are paying out of pocket to care or care or both a child and an older adult relative in their home. I'm also proud to be a cosponsor of the alleviating barriers to caregiving act, which takes important steps to provide support and flexibility to family caregivers, navigating the complexities of federal programs. These, this committee is not a partisan committee and these aren't partisan issues, they're family issues. Let me say this clearly, we cannot talk, cannot talk about supporting family caregivers without talking about the Older Americans Act. The community programs that family caregivers depend on every single day flow through the OAA. We're talking about everything from meal delivery to respite, Respect Care and Caregiver Counseling. Reauthorization isn't an option, it is overdue. I'd like now address the sandwich generation caregivers here today, and join us virtually, we hear you. We hear your problems and we're gonna try to do something about it. What you are doing is very hard, is beautiful and exhausting at the same time, and is one of the most important things a person can do in their life. Today we want to hear your stories, understand your challenges, and make sure your voices are heard as part of the record that moves this work forward. And we cannot forget that our focus must also remain on ensuring the resources meant to help our caregivers uh make sure they're protected against bad actors who try to defraud our government and them. People can't be working, doing the difficult work of caring for their children and parents, to then get ripped off by government that lets their taxes go to fraudsters. Fraud doesn't just steal resources from and damage the integrity of good programs, it's bad for the American economy. first we saw many opposites but we've seen around the country last we saw new reports from the daily wire about massive caregiving fraud happening in columbus ohio this country is almost forty trillion dollars in debt we need accountability to insure that every taxpayer dollar meant for caregiving and for good people like the witnesses we have before us today and the millions of americans they represent is going to where it's supposed to go we have to stop the fraud and hold the perpetrators accountable i wanna thank all of our witnesses for being here today and for the work they do on behalf of caregivers and the families they support. What's gonna happen, we have three votes. So the ranking member and I are gonna have to take turns in the beginning to uh to chair this and um go um um but we'll be right back. So now let me turn over to the ranking member uh Gillibrand for her opening comments.

Thank you Chairman Scott for today's hearing. Sandwich generation caregivers are under extreme stress to care for their children and aging loved ones at the same time. Today's hearing will shine a light on the immense financial and personal stress that unpaid caregivers are experiencing. Sandwich caregivers oftentimes oftentimes step back from their careers pers- and step back from their careers to meet the caregiving demands that they have. My bill, the Social Security Caregiver Credit Act, seeks to protect the retirement security of family caregivers. That stress that sandwich generation caregivers experience worsen as states grapple with the impact of the Big Beautiful Bill, which already has many states contemplating changes to the home and community-based services that help older Americans and people with disabilities live independently in their home. In December, this committee solicited statements from folks about what these services meant to them. Seniors and Americans with disabilities from all fifty states sent us more than thousand pages worth of statements just to show how critical these services are. One New Yorker's testimony sums up why these programs work. She told me that she supports community living because it " creates a sense of belonging and support that strengthens everyone involved." When the Trump administration funding for these programs like home and community-based services. They are not just striking budget line items, they're gutting the support networks that help American families stay afloat, seniors age with dignity, and people with disabilities thrive. Many of these statements we received are from the sandwich generation caregivers. Home and community-based services, along with older Americans Act programs, are lifelines to family caregivers. And there's no better one to speak about this experience than someone who lives it every day. With that, I'm very proud to yield the rest of my time to Senator Andy Kim.

Thank you, Ranking Member Gillibrand, thank you, Chairman and Ranking Member, for holding this hearing and working with me on these incredibly important issues. This conversation hits especially close to home for me. In April of twenty twenty four, my father lost his ability to walk after an accident. It was at that time that we also realized that he had a rapidly devolving cognition and soon after my father was formally diagnosed with alzheimer's and i stepped into this role as being a caregiver this is on top of me being a father to two little boys on top of being a us senator from that point onwards i joined the sandwich generation a community made up of millions already that are and we know that's only gonna grow larger the challenges of the sandwich generation touch all of our lives but too often go overlooked or unnoticed. I bet we all know somebody managing the care of two or more generations of loved ones, holding down a job, keeping their family afloat while being squeezed on both ends, often feeling isolated and navigating these challenges alone. Estimates show that there are over eleven million Americans in this role. By twenty thirty, baby boomers will be over the age of sixty five, and the demand on k- family caregivers, already stretched thin, will intensify. So why is the Committee on Aging talking about the sandwich generation? It's because the care that my aging father gets now is inherently tied to my ability to navigate, provide, and help pay for. We cannot talk about the care for our seniors without considering the families and the caregivers that support them. I cannot be here at this hearing right now without having a caregiver there with my father right now to insure his health. This committee has a unique ability to help caregivers be seen, heard, and understood. For two long sandwich generation caregivers have fallen through the cracks of our policy frameworks. Part of the problem is that we are in the dark about how many truly exist, because national data does not ask about multi-generational caregiving. You cannot build policy on a foundation you cannot see. That's why today I introduced bicameral legislation to add a dedicated question on multi-generational caregiving to national surveys so we can finally give the sandwich generation a permanent place in our national data. Understanding starts with listening. That's why I wanted this hearing today, to spotlight stories too often unheard. And now I want to introduce Cathy Lola, who is part of the sandwich generation in New Jersey. It is a stories like hers that we hear from now on that can best stand up for our caregivers. I hope we can show the video quickly.

Chairman Scott, Ranking Member Gillibrand, and distinguished members of the aging committee, thank you for having me here today to speak. My name is Cathy Lola and I am the mother of a thirty-two year old with significant intellectual and developmental disabilities who I continue to care for at home. Several years ago my dad was diagnosed with both Alzheimer's and Parkinson's disease and I became an important part At that time, I also became a sandwich generation caregiver. Many sandwich generation caregivers don't even recognize our role as caregivers, and are therefore unaware that support services may be available. From my perspective, as challenging as it was to care for multiple family members, I was even more overwhelmed by the complexity of the systems I had to navigate as I attempted to find services and support for myself and my parents. What would have made this process easier for us is having someone to guide us through these confusing and convoluted systems. Having a central hub of supports and services, as well as a navigator to assist with the processes, would have made our journey much easier. Sandwich Generation caregivers deserve more help and a better and simpler way of securing support for ourselves and those we are caring for.

Cathy is absolutely right, the system that caregivers navigate are

Thank you, Sunil Kim. Um, thank you, ranking member. Our first witness is Carla Ratka, Carla Ratka. President, CEO of the Senior Resource Alliance. the Area Agency on Aging serving Central Florida. Miss Radcliffe leads an organization at the center of the caregiving support network in one of the fastest growing regions in the country. She knows firsthand what family caregivers are asking for, where the gaps are, and what it takes to deliver real services to real people in the communities. Please begin your testimony.

Mm-hmm. Chairman Scott, Franky, Member Gilligrand, and distinguished members of the committee, thank you for the opportunity to be here today. As an Area Agency on Aging, or short for Triple A, we serve older adults, caregivers and families every day who are navigating one of the most pressing and personal challenges facing the nation, and that is the caregiving crisis. In nineteen seventy-three, The Triple As were formally established in the Older Americans Act, OAA, as the on the ground organizations charged with helping vulnerable older adults live with independence and dignity in their homes and communities. For more than fifty years, the Triple As have served as local leaders in aging by planning, developing, funding, and implementing local systems of coordinating aging and other home and community-based services. While the National Family Caregiver Support Program wasn't added to OAA until two thousand as title three E, the triple As have been supporting families and caregivers of older adults for a very long time. As Senior Resource Alliance, we use this essential funding to offer family caregivers a number of critical services to shore up their own efforts, including information, resources, individual counseling, respite care, so they can take care of their duties and assist caregivers enlighten the road as they provide quality care for their loved ones. As my and other triple As across the country continue to support family caregivers, there is one population they continue to stand out. The sandwich generation. There are millions of Americans who are caring for aging parents while raising children working full-time and trying to remain financially stable. This is not an abstract policy discussion. There are real people, such as teachers, nurses, small business owners, that are doing everything right and still struggling to hold it together. The average sandwich generation caregiver for a Medicare recipient is forty four years old, significantly younger than caregivers without children's under the age of eighteen, which at average is sixty one years old. And for the sandwich generation caregivers who are employee, may report that reducing their work hours is an alternative for them when they have to care for a person and doubling the responsibilities as caregivers for the elderly and young children. Reducing hours and workforce for a caregiver also reduce their income, which put them in a struggle. At our organization, this is a very good reality that we face every day. And I would like to share with you the story of Grace. Grace is a mother of three children and also the sole caregiver of her father who is living with dementia. She wakes up multiple times on the evening, care for the medications of his father, and also to schedule doctor's appointments. The reality of having to juggle life and workforce and be on the workplace, and also caring for children is actually a very heavy burden that she has to live in. She actually shared with us that this is that she's failing at everything, at her work and at home. However, our organization has been able to support her with referrals through our provider network and to provide respite care for her she has been able to manage the situation in a very effective way the reality is that many of our caregivers are one paycheck away from crisis they are not looking for handouts they are looking for flexibility, they are looking for that opportunity to be able to have support. and to provide quality care for their loved ones, our older Americans. In terms of what the Congress can do to really support caregivers, especially the sandwich generation, well, the approval, the authorization of the Older Americans Act and the program Title Three E, which is the program that provide that respite care that is so necessary to be able to continue to provide services. Also, other bills that are in Congress that are part of my written testimony. Caregiving doesn't happen in silos. It's a family affair in supporting this ecosystem of older Americans, caregivers, and multi-generational families that are all buying together is good business. And that impact is profound. It really is good for the workforce, it's good for families, and it's good to continue to help seniors, elder Americans, to age in place in the communities they love, where they volunteer, where they worship, where they have work. It is important. The sandwich generation is holding on to other generations, so they don't have to do it alone. Thank you for allowing me to present in front of all of you and to carry the voice of the families that we serve every day. Thank you.

Thank you, Carla. Next, I'm honored to introduce Ma- my Mayor, who also joins us from her home state of Florida. She is here today not as a Policy Expert or Program Administrator, but as a caregiver. She has lived the sandwich generation experience, balancing the demands of raising a family while caring for an aging loved one. And she has agreed to share that story with us here today. Takes courage. Voices like hers are exactly why we hold hearings like this and uh, Washington DC. Uh, we need to hear directly from the people these policies are meant to serve. Thank you for being here today and please begin your testimony.

Chairman Scott, Ranking Member Gillibrand, and members of the committee. Thank you for the opportunity to speak today, and for your leadership in advancing legislation that recognizes and supports family caregivers. My name is Megan Marr, I live in Florida, and I am a sandwich caregiver. I am raising two school-age children while also providing ongoing support to my father and his wife. I am also an only child. There is no one to share this role with. Whatever needs to happen, I am the one. I care for my family because I love them. That love is not a burden. It is the reason. Everything I share today comes from that. My caregiving began in twenty thirteen. seven weeks after my oldest son was born, when my mother was diagnosed with stage four breast cancer. I have never known motherhood without also being a caregiver. A few years later, as my mother's health declined, my parents moved into our home. I had a toddler and a baby. I was providing hands-on care for my mother while raising young children. That is what sandwich caregiving can look like at its most literal. a dying parent in one room, a baby in another, and you in the middle. My mother died in twenty seventeen. Three months later, my father became critically ill. There was no pause. Caregiving does not observe a mourning period. My father survived that crisis, but my role as his caregiver never truly ended. Today, he is in the early stages of mild cognitive impairment. The type of support I provide has changed, but it has not lessened. I attend medical, legal, and financial appointments in person and on the phone. I track changes, manage communication, and help navigate decisions. I support him and his wife across state lines because they split their time between Florida and South Carolina. I am the thread of continuity in his care. And all of that exists alongside raising my children, who need a present mother. The hardest part is not any one responsibility. It's that every role matters. There is no version of this where everyone gets enough of me. Many of, much of this work is invisible. It's coordination, advocacy, communication, problem solving, tasks, and holding the full picture. It runs in the background of every day, and it is unpredictable. Care needs don't follow a schedule. Even when resources are available, care is not necessarily accessible. You cannot always find trusted support on short notice. The barrier is not only cost, it is logistical, administrative, and ongoing. Families and care providers are both doing the best they can within a system that was not designed for how caregiving actually unfolds. Caregiving has also reshaped my professional life. I am self-employed in large part because traditional employment could not accommodate the unpredictability of being a sandwich caregiver. The flexibility of self-employment comes with real financial and professional trade-offs. There is a cost to carrying all of this, and it lives in the body. It affects sleep, health, and well-being. It means deferring your own medical appointments, because there is often something more urgent. The loneliness of it also goes unspoken. There is a particular kind of isolation that comes from being the person who holds the full picture. Even when you are not physically alone, you are the one holding it all the time. My experience is not unique. That is exactly the problem. There are millions of sandwich caregivers across the country, largely without systems that recognize or support the full scope of what they are carrying. Families like mine do this because we love each other, but love is not a policy. Caregivers need systems that reflect the reality of what this requires, flexible support, accessible care, and infrastructure that accounts for the full scope of this role. Thank you.

Thank you, Miss Marm. Now I'd like to introduce Jason Resendiz, President and CEO of the National Alliance for Caregiving, the nation's largest leading non-profit research and advocacy organization focused exclusively on family caregiving. He brings a national perspective to the caregiving crisis, backed by research, data and years of experience, working across the policy landscape to advance support for family caregivers of all ages and backgrounds. Please begin your testimony.

Chairman Scott, Ranking Member Gillibrand, and members of the committee. Thank you for the opportunity to speak today about the crisis facing our nation's sandwich generation caregivers. The millions of Americans caring for children and adult at the same time, often invisibly and almost always without enough support. This is an issue that's deeply personal to me and I know for many of you. I grew up watching my mom balance a full-time job while raising three kids and caring for my grandmother through multiple chronic conditions. It was tough work, and she did it out of a deep sense of love and commitment to her family, but also out of a necessity. There were no alternatives in our small South Texas town. For as long as I can remember, my mom dreamed of becoming a s- an accountant, but she was never able to finish college. Her dream took a backseat to her caregiving responsibilities. And the cost wasn't just a degree. It was a lifetime of lower wages, fewer opportunities, and a smaller retirement. Because the year she spent caring for her mother didn't count towards social security the way that paid work does. And my family's story isn't unique. According to research from the National Alliance for Caregiving, which I lead, and AARP, there are sixty-three million adults, nearly one in four Americans, now providing ongoing demanding care to a family member or friend with a serious illness or disability. That is a nearly fifty percent increase in just a decade. Sixteen million are sandwich generation caregivers, raising a child or a grandchild at home while caring for an adult loved one. That's about one in three family caregivers in the sandwich generation. The typical sandwich caregiver is a woman in her early forties, more than a decade younger than the average caregiver, juggling three roles at the same time, a job, her kids, and a loved one who needs care. This work is not occasional. provide an average of twenty-two hours of care each week, a part-time job on top of their parenting. More than sixty percent perform medical or nursing tasks at home, managing medications, dressing wounds, changing feeding tubes, and four in ten do so without any prior training. These are ordinary Americans providing extraordinary care. And the economic toll is severe. Fifty-eight percent of sandwiched caregivers experience at least one negative financial impact. like taking on debt, depleting savings, losing income, or leaving the workforce entirely. These are people in the prime earning years, and the costs compound across decades into smaller retirements and tighter household budgets. The personal toll runs alongside the financial. One in three sandwich caregivers reports high emotional stress, and many say caregiving has worsened their own health. Most did not choose this role, it found them. And the overwhelming majority tell us they need more help to make this care work. And make no mistake, this is work. AARP estimates that family caregivers now provide more than one trillion dollars worth of care each year. They are the invisible backbone of our economy and our long-term care system. Family caregivers are clear about what would make a difference. They need f- meaningful financial relief to offset the rising out-of-pocket costs of care. They need a retirement system that recognizes caregiving as the work it is. They want paid family medical leave to help balance the responsibilities of caring for a loved one while working. And they need easier access to the fragmented maze of benefits and supports that so many struggle on top of the hard work of care to access. There is legislation before Congress that responds directly to each of these needs. The multi-generational home caregiver credit act introduced by Chairman Scott and Senator Welch will provide tax relief to families providing care across generations. The Social Security Caregiver Credit Act, championed by ranking member Gillibrand and Senator Murphy, would credit caregivers up to five years towards their social security benefits. And the alleviating barriers for Caregivers Act from Senators Markey and Capito, would identify ways to reduce the administrative burden on family caregivers as they try to access programs like Medicare or Medicaid. And the Senior Act from Chairman Scott and Senator Smith would address caregiver loneliness as the public health concern that it is. and the Family Act, championed by ranking member Gillibrand, would establish our nation's first ever paid family and medical leave program. Paired with reauthorization and robust funding for the Older Americans Act, these bills would bring us closer to a society that truly values and invests in family caregivers. Senators, my mom gave up her degree, her career, and her financial future to care for the woman who raised her. Millions of Americans are doing the exact same thing right now

Thank you, Mr. Resendiz. Um, now I'd like to introduce Josh Portas, Vice President of Policy and Advocacy at Meals on Wheels America, the national leadership organization supporting the network of more than five thousand community-based senior nutrition programs operating in communities across the country he understands better than almost anyone what it means when older adults can stay safely in their homes and what is lost when the programs that support them go underfunded or unauthorized that connection between community services federal policy and family caregivers is at the heart of what we are exploring today please begin your testimony

good afternoon chairman scott ranking member jillibrand and members of the committee Thank you for the opportunity to testify at this hearing. My name is Josh Protis and I'm proud to serve as the Chief Advocacy and Policy Officer for Meals on Wheels America, here on behalf of a nationwide network of more than five thousand community-based senior nutrition programs serving older adults, in nearly every community. For millions of families, Meals on Wheels starts with a nutritious meal, but it offers so much more. It's a knock on the door, a safety check, a moment of human connection, a referral to other supportive services, and peace of mind for an adult daughter or son who is trying to work, raise children, and care for an aging parent all at the same time. The underpinning of all of this is the Older Americans Act. The Meals on Wheels service model sets the gold standard for successful public-private partnership, working to reduce nutritional risk and social isolation while saving taxpayer dollars, by ensuring that older adults live safer and longer in their own homes, and keeping them out of costly health care and long-term care settings. We can provide Meals on Wheels services to a vulnerable older adult for an entire year for roughly the same cost as one day in the hospital or twelve days in a nursing home. But federal funding has not kept pace with increasing need among our our nation's rapidly growing senior populat population and rising costs for food, fuel, and program operations. One in three Meals on Wheels providers report keeping a wait list, with seniors waiting an average of four months for the care they need and deserve. Too many families are left to absorb the consequences on their own. That challenge is only growing, with twelve thousand people in America turning sixty years old every day, and more older adults struggling to afford their basic needs. The number of seniors with low or very low food security quadrupled between nineteen ninety nine and twenty twenty three. But over this same period, the buying power of federal funding for the OAA nutrition program actually decreased, And the program was serving meals to roughly the same number of seniors in twenty twenty four as it did twenty five years earlier in nineteen ninety nine. This results in escalating unmet need. MAG Aging and Family Services in Orem, Utah, shared that "Due to lack of funding, we've had to resort to removing clients who have in-home support from family members. Our waiting list continues to grow. This has resulted in a lot of panicked seniors and caregivers who are heavily reliant on our program." When community programs cannot keep up, the burden shifts onto family caregivers who are already stretched thin. That can mean more missed work, more stress, more out of pocket costs, and more fear that a loved one is going without food, safety, or connection. For these meal, for these families, Meals on Wheels can bridge the gap between the, what they want to provide and what they can realistically do on their own. This is especially important for caregivers who live at a distance and cannot be present every day. This matters because the older adults served by Meals on Wheels are often the most vulnerable in our communities. Many live with multiple chronic conditions, limited mobility, cognitive decline, disability, or social isolation. Without dependable support, they face greater risk of malnutrition, falls, hospitalization, and premature nursing home placements. The relatively small upfront federal investment to provide Meals on Wheels services is smart fiscal policy. because it prevents more costly interventions downstream. Plus, when we support seniors being able to live independently at home, we reduce the strain on already overburdened hospitals and nursing homes. When Saish reached out to Meals on Wheels, et cetera, in Samford, Florida for help, he couldn't stand for long and was dealing with diabetes, memory loss, and repeated falls that made cooking dangerous. Some days he would just go to bed hungry. Saish had to be placed on a wait list with more than four hundred other seniors, due to funding constraints. He waited three long years for support. While he waited, his energy dwindled and his world shrank. When a meal slot finally opened up, his life changed overnight, and he regained his strength, independence, and a sense of connection. He said, " Meals on Wheels is lifesaving. For people like me, it means everything." For caregivers, that, this kind of support can be the difference between staying in the workforce and cutting back hours, between stability in crisis, between constant fear, and peace of mind. Meals on Wheels cannot solve every challenge that families caught in the middle face, but it can remove some of the daily pressures that push families to the breaking point. During his historic visit with Meals on Wheels of Central Maryland last year, Secretary Kennedy noted the importance of strong support so that Meals on Wheels programs can reach all in need. "History will judge the humanity of our civilization by how we care for our elderly," he said. "Meals on Wheels does not just provide nutrition for the malnourished, It combats the epidemic of loneliness through daily acts of care and compassion. President Trump has asked us at HHS to continue supporting Meals on Wheels so that no American in their twilight years feels forgotten. Vulnerable seniors, their caregivers, and the Meals on Wheels providers that serve them are still waiting to be prioritized. It's time to end the wait. I urge you to prioritize increased funding for Meals on Wheels and other older Americans Act services, as essential supports for both seniors and their family caregivers. Thank you again for this, for holding this hearing on this important topic, and for your bipartisan leadership on behalf of older Americans and their families.

Thank you to Chairman Scott, Ranking Member Gillibrand, and uh Senator Kim for allowing us to testify at this hearing today. I'm with the Association on Aging in New York and I have the distinct honor the fifty-nine area agencies on aging in the state of New York that do incredible work day in and day out, not only for older New Yorkers but also for family caregivers. And I wanna start the conversation by framing it, because I think ageism is something that we see throughout not only legislative priorities but also funding. And I wanna highlight that supporting family caregivers and older Americans should be an expectation, not an afterthought. Older Americans contribute one third of the overall economic impact and output in this country, and are worth over nine trillion dollars annually. From an equity perspective, they deserve to be supported as do their caregivers. Family caregivers you've heard from my colleagues today are the backbone of the economy in the nation and they're largely invisible in policy and funding decisions. Across the United States, more than sixty million caregivers provide essential support to loved ones with a chronic illness a disability or age-related needs. Nearly one in four adults is a caregiver and mu- most provide this without any form of compensation. These caregivers are not just helping families, they're sustaining our entire health care system. In New York alone, more than four point one million caregivers provide uncompensated care to the tune of fifty eight billion dollars per year in economic activity. Nationally unpaid caregivers exceed one trillion dollars to this country, and yet we're failing to support those sandwich generation caregivers. At the same time, our demand is rapidly rising. We now have between seventy five and eighty million adults over the age of sixty. That number continues to grow. Many caregivers are part of the sandwich generation, balancing care for aging relatives, while raising children, including those with disabilities who live in an entirely different ecosystem than aging services do. One in three family caregivers are sandwich generation and they face the highest incidence of documented mental health and work force impacts. These individuals face intense competing demands on their time, their finances, and their overall well-being. Research indicates that eighty-five percent of sandwich generation caregivers report at least one adverse mental health impact. Serious suicidal ideation exists in fifty percent of sandwich generation caregivers in the past thirty day period which is eight times the odds of the normal adult population the strain on caregivers is only increasing as our long-term care system undergoes significant change since twenty twenty the US has lost more than seven hundred and fifty skilled nursing facilities due to workforce shortages rising cost and financial instability when these facilities close the need for care does not disappear it's transitioned to community based settings and mostly on family caregivers. At the same time, H R one and the reduction in Medicaid funds, new eligibility requirements and assessments will make access to home and community-based services harder to obtain and further push individuals to area agencies on aging that already have enormous wait lists. Despite these stark realities, federal investment in caregivers has not kept pace. Under the Older Americans Act, the National Family Caregiver Support Program receives only about two hundred million annually that's less than ten percent of all OAA funding. This is a small fraction compared to the economic value caregivers provide every every year, and the consequences of the imbalance are significant. For working caregivers, responsibilities often mean reducing hours, taking unpaid leave, or leaving the workforce entirely, leading to lost wages, reduced retirement savings, and long-term financial insecurity. Additionally, caregivers spend more than the general public out of their own pockets each year, almost ten thousand dollars in additional funds. We have over four million workers that have left for caregiving roles since the COVID-nineteen pandemic at an economic cost of forty four billion dollars in lost wages. I wanna talk for a moment about uh area agencies on aging and why they contribute to the cost savings to not only caregivers but the Medicaid system. Our average client statewide, if you looked at all our programs and services, is an eighty-three year old low income female who lives alone, has four to ten chronic conditions like diabetes and congestive heart failure, needs assistance with activities of daily living like bathing, toileting and dressing, and we're serving them in their homes and communities on average for seven years for less than ten thousand dollars a piece. If that individual was assessed for nursing home or assisted living placement, they would qualify to the tune of a hundred and fifty thousand dollars on the Medicaid scorecard. So again, I wanna I wanna highlight New York, and I really wanna comment on our State Unit on Aging and the Director um of NYSOFA, Greg Olson, who is leading the nation in innovations. What we're asked here today is to come up with solutions to some of these problems in New York. has done exactly that. We first looked at how we could support caregivers and taking a a real temperature of what was happening with caregivers in the state of New York. So under Commissioner Olson's leadership the state went through a comprehensive working caregiver initiative where they they not only surveyed state employees but they also surveyed private sector employees and they found exactly what we've talked about today that people really need to be supportive because they're they're either leaving the workforce entirely they're reducing their hours, They're having mental health adverse effects, and so we came up with the solution. Uh, we know that workers need to be supported and have access to services, or these things happen to them. So, Nysoph's response was to provide free for any New Yorker under the New York Caregiver Portal an evidence-based online platform known as True Alta, which is supporting thousands of caregivers across the state of New York, and has actually booked about eleven million dollars in savings from uh delay in skilled nursing facility placements. and caregiver support in the community uh that reduced emergency department visits. We also have partnered with AnyCare Counts New York, which is using the caregiver intensity index to quickly within two minutes um assess the caregiver and determine are they in the red, yellow, or green, which do they have a mental health impact, are they doing okay, are they not. And then you're instantly linked to resources that assist you, including localized resources for the state of New York, but also in every state in the nation. State innovation alone cannot meet the scale of this challenge, though federal leadership is essential. We're respectfully urging Congress to take the following actions. Increase funding for the National Family Caregiver Support Program and all of the older Americans Act programs that have been spoken about today. Provide direct financial relief to caregivers through tax credits, stipends, and expanded Medicaid support. Strengthen workplace policies, including paid family and medical leave and flexible work arrangements to help caregivers remain in the workforce. ensure caregivers have access to training, maintain the independence of the Administration for Community Living as a federal authority dedicated to aging and disability services and reauthorize the Older Americans Act, and know that family caregivers are critical, yet often invisible part of our national healthcare infrastructure. They allow millions of older adults and individuals with disabilities to remain in their homes and communities, while saving the system billions of dollars each year. It's time to move beyond recognizing caregivers as heroes and instead provide the policies,

i'd now like to call on senator kim uh for his questions

thank you ranking member and thank you all for uh your comments here today uh miss uh mayor i would like to start with you just first of all thank you for sharing and when you talked about just the isolation and the loneliness that you feel i i feel it too and uh i know many others do as well And I hope by hearing your story, hearing my story, hearing what we're talking about here today, I hope many that feel invisible, feel lonely, recognize that no, there there's many going through this together. And as you said, you know, look, many of us are are are are are ready to step up for our loved ones and try to help. You know, we're we're we're not asking for the moon, but the way I sort of say is like, but it still doesn't have to be this hard. you know and i think one thing that stood out in your comments that i hear from so many others is many of us entered the sandwich generation first of all i didn't even fully understand that term and then someone came up to me and was like oh you're part of the sandwich generation i'm like i guess but like you know you're just so far deep in it you don't even time to step back sometimes and even assess that but what you said i think stood out that i hear from so many others is that many of us enter this designation of sandwich generation through crisis uh you know i had the such circumstance where my father is literally going through surgery uh you know we're we're finding all sorts of other problems simultaneously and there uh now all of a sudden i'm being asked to make decisions about his health i'm being asked to understand you know his medicare uh levels and and and i i'm trying to understand his financial uh security when i'd you know i was not uh you know somebody that had um you know uh uh you know uh attorney privileges or or had any other access so i think just initially i was just overwhelmed and i guess i just wanted to ask you to kinda talk through this like the complexity of navigating you know medicare healthcare uh you know the financial systems and other things to be able to assess can you talk a little bit about how that affected you

absolutely so much of what you said resonates with me um certainly with my mom i kinda call it i didn't know what i didn't know as far as supports and services that might be available through federal or community programs um i had no idea and when moving through healthcare providers the hospital systems discharge planners we were never told about anything that might be available for families like us. So, I didn't know what was there. And uh what you spoke about where you're kind of initiated in at a critical moment, and suddenly you are the healthcare surrogate and you're making decisions. Um I did not have to do that for my mom and my dad and I have had many conversations and planning meetings ahead of time about that but i know that's not the case with for many families and they're kind of launched into this having no idea maybe what their older loved one even wants maybe their older loved one doesn't even have advanced directives so maybe they haven't even made that decision for themselves and then they're left kind of guessing

yeah no i think that the planning and and trying to have that opportunity is something i'm trying to help engage but also who do we turn to you know for that and mister uh mister i wanted to turn to you you know there was a quote that stood out to me when i was reading about the you know the start of medicare for instance uh you know president johnson and truman did this press conference together and there's a line here i wanted to read to you it says quote no longer will illness crush and destroy the savings that they have so carefully put away over a lifetime so that they might enjoy dignity in their later years. No longer will young families see their own incomes and their own hopes eaten away simply because they are carrying out their deep moral obligations to their parents and to their uncles and their aunts. I wanted to ask you, do you feel like this original promise is being borne out in full right now, or do we still have work to do?

We have uh we've come a long way, I'll say that, in terms of the role of medicare's recognition of the importance of supporting the health of older adults across the country in terms of uh the way that we are investing in uh the health of older adults uh i we see that borne out by the longevity boom that we're experiencing in this country but yet we have a tremendous road still ahead we are living longer but we are living longer in poor health and because of that the demands on family caregivers have only increased. And one area where Medicare has not kept up is in recognizing the role that family caregivers play in supporting uh Medicare beneficiaries. Uh, so in terms of providing direct support for family caregivers navigating what is complex care, right, changing wound uh dressings, uh, feeding tubes, PIC lines, these are things that have historically taken place in acute care settings, certainly in the time

you know

uh when the program was established uh it's now more and more happening in the home and yet family caregivers receive very little support and training that's starting to change in the medicare program and i think that's the next frontier as policymakers start to think about modernizing medicare to rise to the moment that we're in for family caregivers

no thank you so much i agree wholeheartedly we've made great progress and i read that quote not to necessarily say you know we have not made more progress but to try to recommit ourselves at this point to trying to follow through to that original goal that we can have that sense of stability and security at a time when we are living longer that we are finding ourselves sometimes in poor health but we're also seeing healthcare expenses significantly higher than where we saw before families spread out further and other challenges and one last thing i wanted to just ask mister resendez is that yeah i i i recently just introduced as i said this legislation today called the multi-generational caregiving data act uh mostly because i i'm just trying to again make sure that we're being seen that we understand and we can make real rational decisions based off of that data i wanted to just ask you what you think you know whether or not you think that the lack of this comprehensive data so far has hurt our ability to fully understand what is the effects of multi generational caregiving in terms of the limits on our ability to fully understand what these families need and how this data might be able to help policymakers, help us identify some of the gaps that are out there. You know, we hear the anecdotal stories that are so powerful, but what what is it that the data can do to be able to help us drive towards solutions going forward?