▶ 0:16:20>> the U.S. special committee on aging will come to order. Across the country, millions of americans are being squeezed from both sides. They are raising children, working full-time, and caring for an aging parent. Tim talks about this quite a bit. We call this group the sandwich generation and washington has not done enough to recognize them, support them, or simply to say we see you. The numbers are striking.
▶ 0:16:5111 million americans are simultaneously caring for a child and older adult. Many are doing this while working full-time. Too many find the balance impossible. Many are overwhelmed and doing it quietly without complaint. One in five family caregivers has reduced their work hours or left the workforce entirely to provide care. That is not just sacrifice. That is lost wages and retirement savings that compounds over a lifetime.
▶ 0:17:17The estimated economic value of unpaid caregiving in this country is $6 billion every year. These are sons, daughters, and spouses who have stepped up because they love someone. Love does not pay the bills. Our tax code, federal programs, and social infrastructure have not kept pace with what these families need.
▶ 0:17:36That is why I am proud to be working on multigenerational home care credit act which would provide meaningful tax relief to family caregivers who are paying out-of-pocket to care for both a child and older adult in the home. I am 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.
▶ 0:18:03This committee is not a partisan committee and these are not partisan issues. They are family issues. Let me say this clearly. We cannot talk about supporting family caregivers without talking about the older americans act. The community programs family caregivers depend on every single day flow through the oaa, everything from meal delivery to respite care and caregiver counseling. Reauthorization is not an option. It is overdue.
▶ 0:18:31The sandwich caregivers today and joining us virtually, we hear you. We hear your problems and we are going to try to do something about it. What you are doing is hard. It is beautiful and exhausting at the same time. It is one of the most important things a person can do in their life. 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.
▶ 0:18:55Our focus must also remain on ensuring the resources to help our caregivers, make sure they are protected against bad actors who try to defraud our government and them. People cannot be working, doing the difficult work of caring for their children and parents, and get ripped off when their taxes go to fraudsters. Fraud does not just steal resources. It is bad for the american economy. We saw it in minneapolis. We have seen it around the country.
▶ 0:19:24We saw new reports from the daily wire about caregiving fraud in columbus, ohio. This country is almost $40 trillion in debt. We need accountability to ensure every taxpayer dollar meant for caregiving and the witnesses we have before us today and the millions of americans they represent is going to where it is supposed to go. We have to stop the fraud and hold perpetrators accountable. We thank our witnesses for being here today and for the work they do on caregivers and the families they support. We have three votes.
▶ 0:19:55The ranking member and I are going to have to take turns to chair this and go, but we will be right back. Let me turn it over to the ranking member for your comments.
▶ 0:20:12Sen. Gillibrand: Family caregivers are under stress to care for 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 often times step back from their careers, 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.
▶ 0:20:44Sen. Gillibrand: The stress that sandwich generation of caregivers experience will worsen as they struggle 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.
▶ 0:21:11Sen. Gillibrand: Seniors and americans with disabilities from all 50 states sent us more than a thousand pages worth of statements, just to show how critical these services are. One new yorker's testimony sums up why these programs work.
▶ 0:21:32Sen. Gillibrand: She told me that she supports community living because it "creates a sense of belonging and support that strengthens everyone involved." many trump administration cuts funding for these programs like home and community-based services, they are not just striking budget line items. They are gutting the support networks that help american families stay afloat, seniors age with dignity, and people with disabilities thrive.
▶ 0:22:00Sen. Gillibrand: Many of these statements we received are from sandwich generation caregivers. Home and community-based services along with the older americans act programs are lifelines to family caregivers. There is no better one to speak about this experience than someone who lives it every day. With that I am very proud to yield the rest of my time to senator andy kim.
▶ 0:22:22Sen. Kim: 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 2024, my father lost his ability to walk after an accident. It was at that time that we also realize that he had a rapidly devolving cognition. Soon after, my father was formally diagnosed with alzheimer's. I stepped into this role as being a caregiver.
▶ 0:22:51Sen. Kim: This is on top of me being a father to two little boys, on top of being a U.S. senator. From that point onward, I joined the sandwich generation, a community made up of millions already, and we know that is only going to grow larger. The challenges of the sandwich generation touch all of our lives but too often go overlooked or unnoticed.
▶ 0:23:13Sen. Kim: We all know somebody managing the care of two or more generations of loved ones, holding down a job, keeping their family afloat, while being squeezed on both ends, often feeling isolated and navigating these challenges alone. Estimates show that there are over 11 million americans in this role. By 2030, baby boomers will be over the age of 65, and the demand on family caregivers, already stretched thin, will intensify.
▶ 0:23:41Sen. Kim: Why is the committee on aging talking about the sandwich generation? It is because the care that my aging father gets now is inherently tied to my ability to navigate, provide, and help pay for it. We cannot talk about the care for our seniors without considering the families and the caregivers that support them. I cannot be here at this hearing right now without having a caregiver there for my father right now, to ensure his health.
▶ 0:24:08Sen. Kim: This committee has a unique ability to help caregivers be seen, heard, and understood. For too 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 multigenerational caregiving. We cannot build policy on a foundation you cannot see.
▶ 0:24:33Sen. Kim: That is why today I introduced bicameral legislation to have a dedicated question on multigenerational caregiving on national surveys, so we can finally give the sandwich generation a permanent place. Understanding starts with listening. That is why I wanted this hearing today, to spotlight stories too often unheard. Now I want to introduce kathy lola, who is part of the sandwich generation in new jersey.
▶ 0:25:00Sen. Kim: It is stories like hers that can best stand up for our caregivers. I hope you can show the video quickly.
▶ 0:25:10Ms. Lola: Chairman scott, ranking member gillibrand, and distinguished members of the committee, thank you for having the hearing. My name is kathy lola, and I have a two-year-old with significant intellectual disabilities who I continue to care for at home. Several years ago, my dad was diagnosed with both alzheimer's and parkinson's disease and I became an important part of his caregiving team. At that time, I also became a sandwich generation caregiver.
▶ 0:25:40Ms. Lola: Many sandwich generation caregivers do not even recognize our role as caregivers and are 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.
▶ 0:26:03Ms. Lola: What could 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.
▶ 0:26:28Sen. Kim: Kathy is absolutely right. The systems are complex and confusing. I have felt that myself. I am grateful to people like kathy who are willing to share their story and be a voice to the challenges that millions are facing. What we hear today needs to be the foundation of continued action and progress toward a solution and relief of our caregivers and families deserve. Thank you chair.
▶ 0:26:51Chair Scott: Thank you, senator kim. Thank you, ranking member. Our first witness is carla -- karla radka, the senior resource -- the ceo of the senior resource alliance in orlando, florida. 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.
▶ 0:27:23Ms. Radka: Chairman scott, ranking member gillibrand, and distinguished members of the committee, thank you for the opportunity to be here today.
▶ 0:27:40Ms. Radka: As an area agency on aging, or aaa come up 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.
▶ 0:27:58Ms. Radka: In 1973, the aaa's were formally established in the older americans act as the on the ground organizations charged with helping vulnerable older adults live with independence and dignity in their homes and communities.
▶ 0:28:14Ms. Radka: For more than 50 years, the aaa's have served as global leaders in aging by planning, developing, funding, and implementing local systems of coordinating aging and other home and community-based services. While the national family caregiver support program was not added to oaa until 2000, the aaa's have been supporting families and caregivers of older adults for a very long time.
▶ 0:28:46Ms. Radka: At senior resource alliance, we use this essential funding to offer caregivers a number of critical services to shore up their own efforts, including information, resources, individual counseling, respite care, so they can take care of their duties, and assist caregivers in lightening the load as they provide quality care for their loved ones.
▶ 0:29:15Ms. Radka: As I end of the aaa's across the country continue to support family caregivers, there is one population that 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 down abstract policy discussion.
▶ 0:29:39Ms. Radka: 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 40 four years old, significantly younger than caregivers without children under the age of 18, which average 61 years old.
▶ 0:30:05Ms. Radka: For the sandwich generation of caregivers who are employed, and they report that reducing their work hours is an alternative for them when they have to care for a person. Doubling their responsibilities as caregivers, the elderly and young children. Reducing hours and work force for a caregiver also reduces their income, which puts them in a struggle.
▶ 0:30:32Ms. Radka: At our organization, this is a reality we face every day. I would like to share with you the story of grace. Grace is a mother of three children and the sole caregiver of her father, who is living with dementia. She wakes up multiple times in the evening to care for the medications of this father, and also to schedule doctors appointments.
▶ 0:30:59Ms. Radka: The reality of having to juggle life and work force and be in the workplace and also caring for children is actually a very heavy burden. She actually shared with us that she is failing at everything -- at her work and at home. However, our organization has been able to support her with referrals to a provider network, and to provide respite care for her.
▶ 0:31:29Ms. Radka: She has been able to manage this situation in a very effective way. The reality is that many of our caregivers are one a 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.
▶ 0:31:54Ms. Radka: In terms of what the congress can do to really support caregivers, especially the sandwich generation, well, approve the reauthorization of the older americans act, and the program which is the program that provides that respite care that is so necessary to be able to continue to provide services. Also, other bills in congress that are part of my written testimony.
▶ 0:32:25Ms. Radka: Caregiving does not happen in silence. It is a family affair. Supporting this ecosystem of older americans, caregivers, and multigenerational families together, is good business. That impact is profound. It really is good for the workforce. It is good for families.
▶ 0:32:46Ms. Radka: And it is 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 worked. It is important. The sandwich generation is holding on to all the 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.
▶ 0:33:14Chair Scott: Thank you, karla. I also want to introduce mebhan m -- meghan mayer, from florida, who is here as a caregiver. She has balance the demands of raising a family while caring for an aging loved one. She has agreed to share that story with us today. It takes courage. Voices like hers are the reason we hold hearings like this in washington, D.C..
▶ 0:33:44Chair Scott: 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.
▶ 0:33:55Ms. Maher: Thank you for the opportunity to speak today and for your leadership in advancing legislation that recognizes and supports family caregivers. I live in florida and I am a sandwich caregiver. I am raising 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.
▶ 0:34:25Ms. Maher: Whatever needs to happen, I am the one. I care for my family because I love them. That love is not a burden. It is the reason. Everything I share today comes from that. My caregiving began in 2013, seven weeks after my oldest son was born, when my mother was diagnosed with stage iv 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.
▶ 0:34:55Ms. Maher: I had a toddler and a baby. I was providing hands-on care for my mother while raising young children. That is what sandwich caregiving can look like at its most literal. A dying parent in one room, a baby in another. And you in the middle. My mother died in 2017. Three months later, my father became critically ill. There was no pause. Caregiving does not observe a morning. -- mourning period.
▶ 0:35:28Ms. Maher: 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. I tracked 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.
▶ 0:35:58Ms. Maher: I am the thread of continuity in his care. And all of that exists alongside raising my children, who need a present mother. The hardest part is not any one responsibility. It is that every role matters. There is no version of this where everyone gets enough from me. Much of this work is invisible.
▶ 0:36:21Ms. Maher: It is coordination, advocacy, communication, problem-solving, tasks, and holding the full picture. It runs in the background of every day and it is unpredictable. Care needs don't follow a schedule. Even when resources are available, care is not necessarily accessible. We cannot always find trusted support on short notice. The barrier is not only cost.
▶ 0:36:50Ms. Maher: It is logistical, administrative, and ongoing. Families and care providers are 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.
▶ 0:37:15Ms. Maher: 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.
▶ 0:37:45Ms. Maher: Even when you are not physically alone, -- physically at home, 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, love is not policy.
▶ 0:38:11Ms. Maher: 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.
▶ 0:38:25Chair Scott: Thank you. I would like to introduce jason resendez, president and ceo of the largest advocacy organization focused on family caregiving. He brings a national perspective backed by research, data, and years of experience across -- working across the policy landscape to support caregivers of all ages and backgrounds. Please begin your testimony.
▶ 0:38:53Mr. Resendez: 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 an adult at the same time, often invisibly and almost always without enough support. This is an issue that is deeply personal to me, and I know for many of you.
▶ 0:39:18Mr. Resendez: 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. My mom dreamed of becoming an accountant, but she was never able to finish college. Her dream took a backseat to her caregiving responsibilities.
▶ 0:39:47Mr. Resendez: The cost was a lifetime of lower wages, fewer opportunities, and a smaller retirement, because the years she spent caring for her mother did not count toward social security the way paid work does. My family story is not unique. According to research from the national alliance for caregiving and aarp, there are 63 million adults, nearly one in four americans, providing ongoing demanding care to a family member or friend with a serious illness or disability.
▶ 0:40:16Mr. Resendez: That is a nearly 50% increase in just a decade. 16 million are sandwich generation caregivers, raising a child or grandchild at home while caring for an adult loved one. The typical sandwich caregiver is a woman in her early 40's, more than a decade younger than the average caregiver, juggling three roles at the same time -- a job, her kids, and a loved one who needs care. This work is not occasional.
▶ 0:40:46Mr. Resendez: Sandwich caregivers provide an average of 22 hours of care each week, a part-time job on top of their parenting. More than 60% provide medical or nursing tasks at home -- managing medications, dressing wounds, changing feeding tubes. Four in 10 do so without prior training. These are ordinary americans providing extraordinary care. The economic toll is severe.
▶ 0:41:12Mr. Resendez: 58% of sandwich caregivers experience at least one negative financial impact like taking on debt, depleted savings, losing income, or leaving the workforce entirely. These are people in their prime earning years, and the costs compound across decades into cratered 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.
▶ 0:41:42Mr. Resendez: 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 $1 trillion worth of care each year. They are the invisible backbone of our economy and our long-term care system. Family caregivers are clear about what would make a difference. They need meaningful financial relief to offset the rising out-of-pocket costs of care. They need a retirement system that recognizes caregiving as the work it is.
▶ 0:42:14Mr. Resendez: They want paid family and medical leave to help balance the responsibility 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 with on top of the hard work of care, to access. Legislation in congress response directly to each of these needs. The home caregiver credit act introduced by chairman scott and senator welch would provide tax relief to families providing care across generations.
▶ 0:42:42Mr. Resendez: The social security caregiver credit act from ranking member to and senator murphy would credit caregivers up to five years toward their social security benefits. In the alleviating barriers from senators markey and o would find ways to reduce the administrative barrier on caregivers as a trade to access programs like medicare and medicaid. The senior act would address caregiver loneliness as the public health concern that it is.
▶ 0:43:11Mr. Resendez: The family act championed by ranking member gillibrand would establish our first ever paid family and medical leave program. With robust funding, these bills will 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.
▶ 0:43:37Mr. Resendez: Millions of americans are doing the same thing right now across this country, and they deserve better. We have the data. We have the solutions. We have 63 million reasons to act. What we need now is a leadership that matches the sacrifices of our nation's sandwich generation caregivers. Thank you and I look forward to your questions.
▶ 0:43:58Chair Scott: Now I would like to introduce josh protests -- p rotas from meals on wheels america, supporting senior nutrition programs operating in communities across the country. He understands better than almost anyone what it means for older adults to say -- stay safely in their homes and what happens when programs to support them go underfunded or unauthorized.
▶ 0:44:27Chair Scott: That connection between policy and family caregivers is the heart of what we are exploring today. Please begin your testimony.
▶ 0:44:33Mr. Protas: Good afternoon, members of the committee. Thank you for the opportunity to testify at this hearing. I am proud to serve as the chief advocacy and policy officer for meals on wheels america, here on behalf of a nationwide network of community-based nutrition programs serving older adults in nearly every community. For millions of families, meals on wheels starts with a nutritious meal, but offers so much more.
▶ 0:45:00Mr. Protas: It is a knock on the door, a safety check, a moment of 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.
▶ 0:45:19Mr. Protas: The meals on wheels service model sets the gold standard for its successful public-private partnership, working to reduce nutrition risk and social isolation while saving taxpayer dollars to ensure that older adults are safe or longer in their old homes, 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 12 days in a nursing home.
▶ 0:45:47Mr. Protas: Federal funding has not kept pace with increasing need among our nation' history rapidly growing senior population, and rising costs for food and fuel. One in three meals on wheels providers report a wait list, with seniors waiting an average of four months on care they need and deserve. Too many families are left to absorb the consequences on their own.
▶ 0:46:10Mr. Protas: That challenge is only growing, with 12,000 people in america turning 60 years old every day and more older adults struggling to afford their basic needs. The number of seniors with low or very low food security quadrupled between 1999 and 2023. Over the same period, the combined power of federal funding for the nutrition program actually decreased. The program is serving meals to roughly the same number of seniors in 2024 as it did 25 years earlier, in 1999.
▶ 0:46:45Mr. Protas: Mag aging and family services in utah shared that due to lack of funding we have had to resort from removing support. The 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.
▶ 0:47:08Mr. Protas: That can be more missed work, more stress, more out-of-pocket costs, and more fear that a loved one is going without food and safety. For these families, meals on wheels can reduce the gap between what they want to provide and what they can realistically do on their own. This is especially important for caregivers who live at a distance and cannot be present every day. This matters because the older adults served by meals on wheels are often the most vulnerable in our communities.
▶ 0:47:37Mr. Protas: Many live with multiple chronic conditions, limited mobility, cognitive decline, disability, or social isolation. Without dependable support, they face greater risks of 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.
▶ 0:48:03Mr. Protas: Plus, when we support seniors being able to live independently at home, we reduce the strain on already overburdened hospitals and nursing homes. When one senior reached out, he could not stand for long. He was dealing with memory loss and repeated falls that made cooking dangerous. Some days, he would just go to bed hungry. She had to take a place on a waitlist with more than 400 other seniors due to funding constraints.
▶ 0:48:31Mr. Protas: He waited three long years for support. While he waited, his energy dwindled in his world shrank. When a mail slot finally opened up, his life changed overnight. He regained his strength, independence, and a sense of connection. He said meals on wheels is life-saving. For people like me, it means everything. For caregivers, this kind of support can be the difference between staying in the workforce and cutting back hours, between stability and crisis, between constant fear and peace of mind.
▶ 0:49:01Mr. Protas: Meals on wheels cannot solve every problem families face, but it can remove some of the daily pressures that push families to the breaking point. During his historic visit with meals on wheels in central maryland last year, secretary kennedy noted the importance of strong support so that meals on wheels programs can reach all of the needy. 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.
▶ 0:49:31Mr. Protas: It combats loneliness with daily acts of care and compassion. President trump has asked us to continue supporting meals on wheels so no american in their twilight years feels forgotten. Vulnerable seniors, their caregivers, and providers that serve them are still waiting to be prioritized. It is time to end the waiting. 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.
▶ 0:49:58Mr. Protas: Thank you again for holding this hearing on this important topic and for your bipartisan leadership on behalf of older americans.
▶ 0:50:16Ms. Preve: Thank you for allowing us to testify today. I'm with the association on aging in new york and have the honor to represent the 50 nine area agencies on aging in the state of new york that do work not only for older new yorkers, but for family caregivers. I want to start the conversation by framing it, because I think ageism is something we see throughout not only legislative priorities, but also funding. Supporting family caregivers and older americans should be an expectation, not an afterthought.
▶ 0:50:47Ms. Preve: Older americans contribute a third of the economic impact and output in this country and are worth over $9 trillion annually. From an equity perspective, they deserve to be supported, as do their caregivers. Family caregivers are the backbone of the economy and the nation, and they are largely invisible in policy and funding decisions. More than 60 million caregivers provide essential support to loved ones with a chronic illness, disability, or age-related needs.
▶ 0:51:13Ms. Preve: Nearly one in four adults as a caregiver, and most by this without any compensation. These caregivers are not just helping families. They are sustaining our health care system. In new york, more than 4.1 million caregivers provide care to the tune of $58 billion per year of economic activity. Nationally, unpaid caregivers exceed $1 trillion to this country, yet we are failing to support those sandwich generation caregivers. At the same time, demand is rapidly rising.
▶ 0:51:42Ms. Preve: We have between 75 and 80 million adults over the age of 60. That number continues to grow. Many caregivers are balancing care for aging relatives while raising children, including those with disabilities, who live in a different ecosystem then aging services do. One in three caregivers are sandwich generation and face the highest instance of mental health and workforce impacts. They face intense competing demands on their time, finances, and overall well-being.
▶ 0:52:12Ms. Preve: Research indicates that 85% of sandwich generation caregivers support -- report at least one adverse mental health impact. Serious suicidal ideation exists in 50% of sandwich generation caregivers in the last 30 day period, which is eight times the odds of the normal adult population. The strain on caregivers is only increasing as our care system undergoes significant change. Since 2020, the U.S.
▶ 0:52:38Ms. Preve: Has lost skilled nursing facilities due to rising costs and financial instability. When these facilities close, the need for care does not disappear. It is transition to community-based settings and mostly on family caregivers. The same time, the reduction of medicaid funds, new eligibility requirements, and assessments only make community based services harder to obtain and push individuals to agencies that already have enormous weight lists.
▶ 0:53:07Ms. Preve: Despite the stark realities, federal investment in caregivers has not kept pace. The support program receives only about 200 million dollars annually, less than 10% of all oaa funding. This is a small fraction compared to the economic value caregivers provide every year. The consequences of the imbalance are significant. Responsibilities often mean taking leave or leaving the work faced workforce entirely.
▶ 0:54:04Ms. Preve: Caregivers spend more than the general public out of their own pockets each year. Almost $10,000 in additional funds. We have over 4 million workers that have left their caregiving role since the covid-19 pandemic, at an economic cost of $44 billion in lost wages. I want to talk for a moment about area agencies on aging and why they contribute to the cost savings to not only caregivers, but the medicaid system. Our average client statewide is an 83-year-old low income female who lives alone, has four to 10 chronic conditions like diabetes and congestive heart failure, needs assistant with activities like bathing, toileting, and dressing, and we are serving them on average for seven years for less than $10,000 a piece. If that individual was assessed for nursing home placement, they would qualify for the tune of 150 thousand dollars on the medicaid scorecard.
▶ 0:54:33Ms. Preve: I want to highlight new york and I want to comment on our state unit on aging and the director, greg olson, who is leading the nation and innovations. We are asked to come up with solutions to some of these problems. New york has done exactly that. We first looked at how we could support caregivers. Taking a real temperature of what was happening with caregivers in the state of new york.
▶ 0:54:58Ms. Preve: Under commissioner olson's leadership, the state went through a comprehensive working caregiver initiative where they not only surveyed state, but private sector employees, and they found what we talked about today, that people need to be supported because they are leaving the workforce entirely, reducing their hours, having mental health adverse effects. We came up with a solution. We know that workers need to be supported and have access to services when these things happen to them.
▶ 0:55:27Ms. Preve: Our response was to provide free for any new yorker under the new york caregiver portal and evidence-based online platform which is supporting thousands of caregivers across the state of new york and has actually booked about $11 million in savings from a delay in skilled nursing facility placements and caregiver support in the community that reduced emergency department visits.
▶ 0:55:50Ms. Preve: We also have partnered with someone using the caregiver intensity index to quickly assess a caregiver and determine are they in the red, yellow, or green. Do they have a mental health impact? You are instantly linked to resources that assist you, including localized resources for the state of new york, but also every state in the nation. State innovation alone cannot meet the scale of this challenge. Federal leadership is essential.
▶ 0:56:19Ms. Preve: We urge congress to increase funding for the national caregiver support program and all the older americans act programs that have been spoken about today. By direct financial relief to caregivers through tax credits, stipends, medicare support. Strengthen paid family and mental leave and help caregivers remain in the workforce. Ensure caregivers have access to training.
▶ 0:56:44Ms. Preve: Maintain the independence of the administration for community living as a federal authority, and reauthorize the older americans act. And know that family caregivers are critical yet an often invisible part of our infrastructure. They allow millions of adults and individuals with disabilities to remain in their homes and communities while saving the system billions of dollars each year. It is time to move beyond recognizing caregivers as he and provide the support they need to continue this essential work. Thank you.
▶ 0:57:15Sen. Gillibrand: I would like to call on senator kim for his questions.
▶ 0:57:18Sen. Kim: Thank you all for your comments here today. Ms. maher, first of all, thank you for sharing. When you talked about the isolation and the loneliness that you feel, I feel it too. I know many others do as well.
▶ 0:57:37Sen. Kim: And I hope by hearing your story, hearing my story, hearing what we are talking about here today -- I hope many that feel invisible, feel lonely, recognize that there are many going through this together. As you said, many of us are ready to step up for our loved ones and try to help. We are not asking for the moon. But it does not have to be this hard, you know?
▶ 0:58:05Sen. Kim: One thing that stood out in your comments, and I hear from so many others, is many of us enter the sandwich generation -- I did not fully understand that term and then someone came up to me and was like, you are part of the sandwich generation. I guess? You are so far deep in you do not have time to step back at times and even assess that. What you said I think stood out that I hear from so many others. Many of us enter this designation of sandwich generation through crisis.
▶ 0:58:35Sen. Kim: I had the circumstance where my father was literally going through surgery. We are finding all sorts of other problems simultaneously. And now all of a sudden I am being asked to make decisions about his health. I am being asked to understand his medicare levels and I am trying to understand his financial security.
▶ 0:58:57Sen. Kim: I was not somebody that had, you know, attorney privileges, or had any other access. So I think just initially, I was just overwhelmed. I wanted to ask you to talk through this, the complexity of navigating medicare, health care, the financial systems and other things. Can you talk a little bit about how that affected you?
▶ 0:59:24Ms. Maher: Absolutely. So much of what you said resonates with me. Certainly, with my mom, I did not know what I did not know, as far as supports and services that might be available through federal and community programs. I had no idea.
▶ 0:59:50Ms. Maher: When moving through health care providers, hospital systems, discharge plans, we were never told about anything that might be available for families like us. So I did not know what was there.
▶ 1:00:08Ms. Maher: And what you spoke about where you are kind of initiated in a critical moment, and suddenly you are the surrogate and you are making decisions -- I did not have to do that for my mom. And my dad and I have had many conversations and planning meetings ahead of time about that.
▶ 1:00:33Ms. Maher: But I know that is not the case for many families, and they are launched into this having no idea, maybe, what their older loved one even wants. Maybe their older loved one does not even have advanced directives. Maybe they have to make that decision for themselves and they are left guessing.
▶ 1:00:58Sen. Kim: I think that planning and trying to have that opportunity is something I'm trying to help engage. But also, who do we turn to for that? I wanted to turn to you -- there was a quote that stood out to me when I was reading about the start of medicare, since president johnson and truman did this press conference together. There is a line and wanted to read.
▶ 1:01:21Sen. Kim: It says no longer will illness crush or 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 own hopes eat away simply because they are tearing away their deep moral obligations to their uncles and aunts. Do you feel this original promise is being born out in full right now? Do we still have work to do?
▶ 1:01:52Mr. Resendez: We have come a long way. I will say that. In terms of the role of medicare's recognition of the importance of supporting the health of older adults across the country, in terms of the way that we are investing in the health of older adults -- we see that borne out by the longevity boom we are experiencing in this country. Yet we have a tremendous road still ahead.
▶ 1:02:20Mr. Resendez: We are living longer, but we are living longer in poor health. Because of that, the demands on family caregivers have only increased. One area where medicare has not kept up is in recognizing the role that family caregivers play in supporting medicare beneficiaries.
▶ 1:02:38Mr. Resendez: So in terms of providing direct support for family caregivers navigating what is complex care -- changing wound dressings, feeding tubes, picket lines -- these have historically taken place in an acute care setting at the time the program was established. Now, more and more happening in the home. Yet family caregivers received little support and training. That is starting to change with the medicare program.
▶ 1:03:08Mr. Resendez: That is the next infrastructure, for medicare to rise to that level for family caregivers.
▶ 1:03:15Sen. Kim: I agree wholeheartedly. We have made great progress. I read that quote not to say we have not made any progress, but to try to recommit ourselves at this point to try 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.
▶ 1:03:36Sen. Kim: We have also seen health care expenses significantly higher than where we saw before, family spread out further, and all the challenges. One last thing I wanted to ask is that I recently introduced legislation today called the multigenerational caregiving data act. Mostly because I am just trying to make sure that we are being seen, that we understand that we can make rational decisions based on that data.
▶ 1:04:03Sen. Kim: I wanted to just ask you what you think, whether or not you think that the lack of this comprehensive data so far has hurt our ability to fully understand the effects of multigenerational caregiving in terms of the limits on our abilities to fully understand what families need, and how this data might be able to help policymakers -- help us identify some of the gaps that are out there. We hear the anecdotal stories that are so powerful.
▶ 1:04:33Sen. Kim: What is it that the data can do to be able to help us drive toward solutions, going forward?
▶ 1:04:40Mr. Resendez: Thank you for your leadership in advancing that piece of legislation. Data is actually critical to helping us understand the full scope of the challenges that family caregivers face, particularly sandwich caregivers. Having better data gives us the ability to make better decisions. To understand how caregiving changes, state to state. Federal program to federal program.
▶ 1:05:09Mr. Resendez: Data absolutely can help drive accountability. We are not going to change what we don't measure. By having stronger data systems in place, we can hold ourselves accountable. We can hold policymakers accountable. We can hold states accountable for the progress they are making, responding to the data that starts to come in because of these new tools and measurement opportunities.
▶ 1:05:37Sen. Kim: Chairman, again, thank you for holding this hearing, working with me on these. We have real ideas, the ranking member, myself, and others, and I hope this committee can try to accelerate that. The hearing is really wonderful. But what are caregivers, what the sandwich generation needs israel solutions. I am grateful that you are willing to be part of that effort. Thank you chairman.
▶ 1:05:59Chair Scott: Thank you for caring about this and thanks for your focus on this. The senior act includes provisions specifically designed to support multigenerational families and connect them to the broader community services network. From your experience operating at the local level, how important is it that federal agency policy thinks about the whole family unit rather than just the older adult in isolation, and what does it mean for how you design programs?
▶ 1:06:27Ms. Radka: I think that supporting multiple generation households, and to be able to support the whole family as a whole, is a good business, because what we are talking about in here is that caregiving is not done in silos. It is a family affair.
▶ 1:06:44Ms. Radka: When we support the family, we are taking care of the family as a whole unit, and especially in multigenerational families where the grandparents create an incredible environment for grandchildren. Studies and research show us that when grandparents are present in the lives of a person younger than 18, there is less fighting and less turmoil.
▶ 1:07:12Ms. Radka: We know that for grandparents that are dealing with isolation, the presence of grandchildren is essential for quality of life. We have multiple families and especially in minority communities, where multigenerational families are part of the whole household, and then providing that support in that unit is a good business.
▶ 1:07:36Ms. Radka: It is good for the workforce because the caregiver can continue to have a presence in the workforce and take care of their financial resources, and be a financial contributor to the family. It is good for the quality of life for the senior. It is good for the children who learn responsibility and compassion by having the elderly, or older americans living at home.
▶ 1:08:00Chair Scott: One of the things we hear from sandwich generation caregivers across the country is that even when they can afford to pay for some help at home, the costs are prohibitive. Home care agencies often require a minimum number of hours per visit or per week. For a family that just needs a few hours, those limits can make professional home care completely out of reach. Has that been your experience?
▶ 1:08:29Chair Scott: And when you could not get the affordable help you needed, who filled that gap? Was it you or somebody else?
▶ 1:08:37Ms. Maher: Thank you for talking about this important and often unseen part of sandwich caregiving. This is absolutely probably one of the largest challenges of sandwich caregiving I ever had, is when I was caring for my mom and my dad when my sons were younger, and the hands on
▶ 1:09:07Ms. Maher: Caregiving needs were different than they are now. It was virtually impossible to find trusted support, intermittent care, for them, when I wanted to go with my mom to her infusions, or with my dad. It was very difficult to find that type of care.
▶ 1:09:32Ms. Maher: And when we did find somebody that we trusted, we ultimately chose to have her come for more hours every week than what we ultimately needed, to be able to have her and have her available, because when you find somebody you trust, you do whatever you can to keep them.
▶ 1:09:54Chair Scott: Working on the multigenerational home caregiver credit act, which would provide tax relief to family caregivers who are supporting both a child and an older adult in their home. From a research and policy standpoint, what does the evidence tell us about the financial burden facing these families, and why is a text based approach the right vehicle to provide meaningful relief?
▶ 1:10:18Mr. Resendez: We know that there are tremendous responsibilities that come with caregiving, financial being chief among them. More than 48 percent of family caregivers experience at least one negative financial impact because of their caregiving responsibility. That number goes up for sandwich generation caregivers who are balancing the financial responsibilities of having children alongside the financial responsibilities of caring for an adult with a serious illness or disabilities.
▶ 1:10:48Mr. Resendez: We also know from our research that over half of family caregivers say they want a tax credit to recognize and support their caregiving responsibilities. On average, family caregivers shoulder around $7,000 to 10,000 dollars in out-of-pocket costs due to their caregiving roles. Home modifications, transportation, medical expenses that the tax code does nothing to recognize.
▶ 1:11:15Mr. Resendez: I am married to a teacher and when we buy school supplies, we can deduct those from our taxes. That is not the case for family caregivers shoulder and caregiving responsibilities. By enabling the tax code to recognize and provide a credit for families who are shouldering multigenerational care, we say that we see and value those expenses and want to meaningfully undress them through a more inclusive and
▶ 1:11:46Mr. Resendez: Caregiver-friendly tax system.
▶ 1:11:47Chair Scott: The older americans act is the backbone of the community programs or network depends on. We have been working hard to get the oaa reauthorized. Ranking member gillibrand and I are leaving that effort. What is the current state of the meals on wheels network in terms of capacity and demand? What would a strong, fully reauthorized oaa mean for your ability to give family caregivers some relief?
▶ 1:12:16Mr. Protas: Thank you for your question and thank you for your leadership, particularly on the senior act that addresses social isolation and loneliness. Such an important issue. We have been waiting for the reauthorization of the older americans act. As you know, there was a bipartisan bicameral agreement at the end of 2024.
▶ 1:12:38Mr. Protas: We would love to see that bill, that broad consensus, be resolved in reauthorized by the end of this congress, as soon as possible. Seniors are waiting. We have heard a lot here today that seniors and their caregivers do not see the priority consideration that they need. For the meals on wheels programs , they are struggling.
▶ 1:13:06Mr. Protas: As I mentioned in my written testimony and presentation, one in three meals on wheels providers has a waitlist right now. Sometimes, that might list us into the years before a senior can get help. Reauthorization of the older americans act would send a strong message. These programs are important. But that also has to happen in the annual appropriations process.
▶ 1:13:32Mr. Protas: Currently four title iii c programs, the oaa nutrition program, current funding is 1.0 $6 billion. That has not changed for the past few years. It took a cut for the first time in fy 24. We calculate that the need is much, much greater than that. The $1.06 billion, we are feeding about 2.6 million seniors and providing those moments of care.
▶ 1:13:59Mr. Protas: Gao estimates there are another 2.5 million food insecure seniors who are not being served. To put in context why it is such a smart investment to make sure we are not leaving somebody behind, our estimate of the funding necessary to reach all food insecure low income seniors is $2.85 billion. That is less than a quarter of what social isolation costs medicare annually.
▶ 1:14:29Mr. Protas: So we can make a we can make a smart investment but we have not made an investment on the infrastructure and support we know works.
▶ 1:14:40Chair Scott: I represent florida. Ranking member gillibrand represents new york. I suspect one comes to caregivers from of the stories you hear in new york are not different from what you here in florida. What you think the states have in common when it comes to what families actually need? We have better beaches.
▶ 1:15:07Ms. Preve: My colleague takes all the volunteers from the state of new york during the winter months. It does not matter what state you are in. Sandwich generation caregivers are a story we hear everywhere. What I find pertinent to the caregiving conversation is caregiving touches everyone regardless of political party or religious beliefs. We are all faced with caregiving at one point in our lives.
▶ 1:15:37Ms. Preve: One thing we know from data is that if you support caregivers, you get more and economic return than you do if you don't support caregivers. You see that in many entities including people leaving the workforce. What is striking to me, I have been at this for 20 years. I love sitting in living rooms and I hear the same story regardless of who the caregiver or receiver is. We just need help. By the time a caregiver is ready to ask for help they are at a crisis point.
▶ 1:16:07Ms. Preve: People like senator kim try to do this work on their own for too long with poor outcomes because they don't have support. In the work I do it is important to make the economic case on why investments are important. I know we are focused on budgets. To share with you a couple tidbits, 72% of sandwich generation caregivers have reduced or stopped contributing to their retirement plans so we will see a cascade effect as people get over -- get older.
▶ 1:16:38Ms. Preve: They are switching from full-time to part-time, losing $21,000 of income for -- per year. Lifetime employment losses are over $600,000 in a caregivers lifetime but more importantly they are reducing spending on nonessentials.
▶ 1:16:55Ms. Preve: 72% of caregivers eliminate vacations, don't take school trips, reduce their hobbies, 45% report taking on credit card debts are going in the opposite direction with that statistic. 62% of people with minor children delay getting married or having additional children due to caregiver issues.
▶ 1:17:17Ms. Preve: We are multiplying the problem which comes down to math, the percentage of older people in the population with younger caregivers and states like new york and florida, we are taught for -- top four in population and there has not been enough funding through the older americans act in decades to support caregivers. The burden doesn't just fall on the states, it falls on localities that are filling the holes because we have so many people on waiting lists.
▶ 1:17:46Ms. Preve: New york is fourth in the nation for the 60 plus population. We have robust funding under governor kathy hochul. . We have 75,000 services that are waitlisted 6-18 months. We have made the economic case but more importantly, we made the social case that we shouldn't be treating the population that develops unfunded this country, -- and funded this country, but have care needs that we are not supporting.
▶ 1:18:12Chair Scott: Your organization serves one of the fastest growing regions in the country. You connect families with services. When a sandwich generation caregiver walks through your door, what are they most desperate for?
▶ 1:18:27Ms. Radka: Our tagline is no us before you need us. By the time we receive a caregiver in the front door, there is already a precipitating factor or crisis that is taking place. At that moment, it is guidance to be able to map out where to even start. Sometimes the door may not be the actual front door.
▶ 1:18:54Ms. Radka: It might sometimes be a virtual door, a phone call when the children of older adults are in a different state than their parents, and their aging parents are in central florida and there is a crisis or hospitalization, or a major concern or a fall. What they are looking at is mapping out where to start.
▶ 1:19:19Ms. Radka: Where to start with legal services to determine if they have access to be able to represent the older adults and make decisions for them. And in many cases, it is basic services like food, shelter and transportation. In many other cases, support for navigating the world of medicare in terms of understanding how the plans work and how to be able to access the right professionals under those plans.
▶ 1:19:49Ms. Radka: It is a multitude of reasons. Each caregiver is provided with an individualized care because each one represents a microcosm that may not be similar to the person walks in next to them. It is important for us to leverage technology. We have systems where we keep a record. There is a trend, so the caregiver doesn't have to start telling their story from the beginning.
▶ 1:20:18Ms. Radka: Any of our counselors can pick up from there and be able to walk the path that is so unique and persistent right now in our communities.
▶ 1:20:27Chair Scott: Thank you. Senator kim?
▶ 1:20:30Sen. Kim: Thank you. I have a few more questions based on what I heard. I wanted to start with you. You laid out the different tools. When we had a chance to talk, you talked about how, more tech tools are arising that we can start to think through how it might be able to help provide support.
▶ 1:20:56Sen. Kim: I wanted to ask more broadly what gaps in resources you see most frequently when working with sandwich generation caregivers? What are your thoughts on how tech might be able to intersect and things we can think about how to be able to speed up and amplify the scale? I would be interested in your thoughts.
▶ 1:21:17Ms. Preve: Thank you for the question. Tech has been a game changer in the state of new york. We don't have enough funding to provide the level of care that sandwich generation caregivers need but we have technology that can assist us in the practice.
▶ 1:21:39Ms. Preve: When we looked, when new york state office for the aging did the working caregivers survey they did -- developed tools for employers and employees to be able to access additional employee assistance benefits. Things that already exist through employers that they weren't tapping into. Specifically to tech projects I talked about the new york caregiving portal. If you are looking for services you don't have time to google what service you are looking for or what condition. You are we give you a standardized plan.
▶ 1:22:10Ms. Preve: If I'm caring for someone with a spinal injury I will get. Mobility and transfer information if someone has a cognitive impairment I might get information about son downing. . You can watch videos, they have an anonymous online support group which has exploded with users because you don't have to turn your camera on and you don't have to say your name. Caregivers with this inherent thought process of I can't talk about this being hard can do that in a safe environment.
▶ 1:22:37Ms. Preve: The new york any care counts campaign is a national movement that utilizes the caregiver intensity index to score people and instantly direct them to resources and what is helping your care journey and hurting it. In your situation, it might be beneficial that you have two sons that bring you joy and good supports but you might have for -- be frustrated with the health insurance process and trying to access benefits. It tells you that in real time.
▶ 1:23:07Ms. Preve: You can direct to resources that fix those. When you look at others I included in my testimony, we deployed over 37,000 of the animatronics cats, dogs and walkers that reduce loneliness. We have a robot that we put in people's homes that are engaging with older adults and caregivers, repeatedly through the day. A caregivers -- can send their reminders through a tablet.
▶ 1:23:35Ms. Preve: There is a variety of online supports for caregivers where they can learn additional tools like the get set up platform that is free, the virtual senior center. We have specialized television programs we called the netflix for dementia where individuals can watch something pertinent to what was important in their lives. It reduces caregiver burnout because your loved one isn't watching a tv show they can't follow.
▶ 1:24:04Ms. Preve: I used an example of a retired mechanic who watched a carburetor get rebuilt on the tv instead of being stuck in front of wheel of fortune. These are not replacements for human connections but they have changed the game in the state of new york as far as us reaching an additional 2 million older new yorkers and their families through these low-cost, high-yield interventions.
▶ 1:24:28Sen. Kim: I would love to follow up and be able to learn more. I wanted to go back to you. One thing that stuck out from your testimony is talking about the entirety in which you have mother, you have had the experience of being a caregiver. I hear about the tensions that come between that in terms of limited resources and in terms of the challenges of childcare and navigating eldercare.
▶ 1:24:58Sen. Kim: I wanted to hear from you how that affected you. If there are any particular concerns you have in terms of those trade-offs that you wanted to share with us.
▶ 1:25:08Ms. Maher: Absolutely. That was something that was a big challenge for me especially when my boys were younger and they needed more hands-on care. It was very difficult to have intermittent care for children, or for eldercare.
▶ 1:25:32Ms. Maher: On both ends of the spectrum, there are minimal hours, certain number of visits each week, certain number of hours required. And I understand that the care provider standpoint, they need consistency and reliability. It is challenging to secure intermittent care.
▶ 1:25:57Ms. Maher: When I finally did, when we found somebody trustworthy, we had her come really for more hours each week than what we truly needed her for. Because there is no infrastructure or system in place to meet the realities of the intermittent care that is needed. So we did what we could to keep her. We know we have the financial resources to be able to do that.
▶ 1:26:28Ms. Maher: Not every family has that. Being able to have care, elder care or childcare, it is not just a financial barrier. It becomes an administrative and infrastructural barrier.
▶ 1:26:48Sen. Kim: A lot of logistics. I know one thing I didn't comprehend was with my father, he not only has alzheimer's but he is unable to walk. Just realizing I don't have a car that can handle this, let alone also, kids seats if I put my children in. All the logistics, I realized that one day when I tried to take him to a medical appointment. Just those different challenges.
▶ 1:27:20Sen. Kim: The childcare is something I'm hearing from a lot, the challenges of added costs on top of this, especially when caregiving requires more of our time. That increases the needs we then have for our kids. So trying to understand that whole picture is important. Sometimes I feel like my identity as a father to two boys is in direct attention to my identity as a son to my father.
▶ 1:27:50Sen. Kim: It feels almost zero-sum in which that can happen. In some ways it can become a when I think about whether I can save for my kids college, feeling like that is something I can't do like I wanted to because of, I don't know what will happen with my father's care. Thank you for sharing that with us today. Chairman, thank you for your generosity in letting me be able to raise these points.
▶ 1:28:15Chair Scott: Thank you. I'm proud to be a cosponsor of the alleviating barriers for caregivers act. It would support flexibility for family caregivers. From your vantage point, what are the gaps in federal caregiver support the legislation like this can fill and what does research tell us about what happens to caregivers when those gaps go unaddressed?
▶ 1:28:40Mr. Resendez: Thank you chairman scott for your leadership on the abc act. It is a critical piece of legislation that will help address a key pain point family caregivers face. We have heard across the panel about the administrative burden family caregivers face as they navigate essential benefits that could support them or their loved ones.
▶ 1:29:07Mr. Resendez: According to our research, over 60% of family caregivers spend their days on top of the care, for sandwich caregivers on top of care for children and work, navigating paperwork, how to access this benefit, how does this impact my ability to access that benefit. It is a maze. Caregivers spend hours a day trying to navigate his.
▶ 1:29:33Mr. Resendez: The abc act would provide an assessment of how to reduce the administrative barrier from a family caregivers specific perspective to increase access to medicare and medicaid and ssa, social security benefits. Bedrock programs that family caregivers and people they are caring for, rely on to make care work and home and community-based living possible.
▶ 1:30:02Mr. Resendez: By targeting that administrative burden, we go a long way in recognizing and honoring the time it takes to care on a daily basis.
▶ 1:30:11Chair Scott: Thank you. The senior act includes provisions focused on multi-generation family support. From your perspective, operating across communities, how important is the policy to connect the dots between independence of families and caregivers surrounding older adults?
▶ 1:30:31Mr. Protas: Thank you for your leadership on the senior act. We know from years of evidence how important social connections are for helping seniors to live independently, keeping them out of emergency rooms and hospitalizations, and out of nursing homes. That support also has significant health benefits.
▶ 1:31:00Mr. Protas: Being able to bolster the ability to make those connections for seniors not only helps the senior, it provides a piece of mind for caregivers can't always be there, gives caregivers the ability to not face the tension so acutely between work hours and being there for their loved ones. Knowing that that kind of connection and care is there, is a huge support for caregivers.
▶ 1:31:28Chair Scott: Attached is a robot cost? How do you get funded?
▶ 1:31:34Ms. Preve: We are lucky, our state unit on aging, the director loves technology so this has been something, when we were thrown headfirst into the covid pandemic, we were hit hard and fast and we had to adjust the service model to get to people. We know social isolation and loneliness is lent to smoking up to a pack of cigarettes per day so this was prevention agenda. The robots are not that expensive.
▶ 1:32:03Ms. Preve: It is around $900 for the robot, but they will work with states that are interested. There is a monthly subscription fee. I have to tell you, le q looks like the pixar lamp. She wakes up and she will follow you. I will use me as an example. She will say how did you sleep last night, becky? If I say I slept terribly four days in a row and on day five I will say I slept well, she will say what did you do different last night and why did you sleep better?
▶ 1:32:34Ms. Preve: That ai learns as you go. She will learn who your relatives are so if you text a photo, le q will announce it to the individual. It is the first proactive ai we have seen with older people unlike alexa where you have to prompt her. Le q prompts you automatically.
▶ 1:32:54Ms. Preve: Not only are people engaging in health and exercise because ellie q prompts them, they are drinking more water, taking medications on time and social isolation and loneliness has been reduced 98% in the pilot we have done over three years. The most popular feature is, you can play bingo against other le q users in the community. Organically, users have become friends. Some might live in manhattan and some might live elsewhere and they forged relationships.
▶ 1:33:26Ms. Preve: If you can reduce someone's risk of dying from loneliness for such a low price, for us that was a win-win that we embraced.
▶ 1:33:33Chair Scott: You talked about return on investment. Have you been able to show your legislature that you could get a return?
▶ 1:33:46Ms. Preve: Absolutely.
▶ 1:33:48Chair Scott: What do they think about it? Did they give you more money?
▶ 1:33:51Ms. Preve: Last year we got the largest investment for unmet needs in the history of the state of new york. We are still waiting for the budget in the state of new york as we speak but what is important, and I said this to the legislature before, we tell stories all the time about individuals, people with disabilities, we share stories but it never seems to move the mark. You have to talk about the economics and you have to talk about the return on investment.
▶ 1:34:23Ms. Preve: Every one of our 34 public-private partnerships has been measured or is being measured because we continue to deploy them. When we can show a strong return on investment it gets the attention of elected officials to say this will save our state money, but it is also the right thing to do for people. So I am more than willing to provide follow-up on our data and metrics. For the animatronics pet project, there have been over 18 studies on the efficacy. Leq has been in the new york times and a variety of other features.
▶ 1:34:53Ms. Preve: Everyone has shown a return and I think for me personally, looking at a pilot we did in the rochester area of new york in partnership of lifespan, to help staff, showed almost a 4-1 return on investment ratio.
▶ 1:35:09Chair Scott: They able to reduce spending because of these?
▶ 1:35:13Ms. Preve: The legislature or the individuals?
▶ 1:35:16Chair Scott: The legislature.
▶ 1:35:18Ms. Preve: Part of our unmet
▶ 1:35:23Need Chair Scott: Funds -- was it medicaid spending they save money on?
▶ 1:35:24Ms. Preve: It was medicaid savings. We served non-medicaid eligible individuals that are just above the income benchmark. If we can't get services to them, 10 percent spend down to medicaid to go to a skilled nursing facility. 7% spend down to an ltc in the community which is a much larger cost then the services we provide.
▶ 1:35:51Ms. Preve: We have historically never had enough funding through the oaa to support the service and structure -- infrastructure.
▶ 1:35:57Chair Scott: If you have data that could show on the federal level, because I have no impact on new york's budget. About the governor of florida. If you had any on the federal budget, it comes through cms so I can talk to men met awes and get -- mehmet oz and get him to reach out. It seems the essays the federal government money.
▶ 1:36:26Ms. Preve: I will send you copious information about cost savings by investing in service infrastructure.
▶ 1:36:31Chair Scott: Talk to him quite a bit and I will see him in a couple weeks. If you give me the data I will try to get him to reach out to you. Ranking member, you are up.
▶ 1:36:45Sen. Gillibrand: Thank you guys. This testimony has been excellent. I want to talk a little bit with all of you on the notion of unpaid and paid leave. Today, we have a requirement that you can take unpaid leave by law if your company has over five employees. What we have tried to do is provide paid leave. I want to talk about that separately. The fact that caregivers just aren't earning money. So much of the care is uncompensated.
▶ 1:37:17Sen. Gillibrand: It is $1 trillion of uncompensated care every year. I would like to hear from each of you, and you can start, one in every four adults in the U.S. is a caregiver and as sandwich generation grows, who bears the cost? The people receiving the care, the children of aging parents and family members are dependent on whatever a worker can cobble together.
▶ 1:37:44Sen. Gillibrand: I'm leading a bill to create a national paid leave program so you could take up to three months off to meet the needs of a loved one or your own, meet the needs of a loved one and continue to be paid a portion of your salary so you are not unpaid during that time and so you don't lose your job, and you can stay in your home or your apartment and not be unable to pay your bills. Mr.
▶ 1:38:11Sen. Gillibrand: Resendez, caregiving is an unavoidable reality. How should policymakers approach family and caregiving is a foundational investment for the labor force and for the health and well-being of the people they care for? What other workplace flexibilities should employers consider as more and more americans are faced with new, compounding caretaking responsibilities?
▶ 1:38:32Mr. Resendez: Thank you, ranking member, for your leadership on the family act and paid family and medical leave. More broadly, we hope it inspires other members of the senate and congress to understand that caregiving is an issue that touches more than 63 million americans.
▶ 1:38:54Mr. Resendez: 70% of those family caregivers that are working age, age 18-64, balance caregiving responsibilities while also balancing career responsibilities. Policymakers should treat paid family and caregiving leave as core economic infrastructure, not a fringe benefit.
▶ 1:39:18Mr. Resendez: Without it, we know nearly 50% of family caregivers experience negative financial impacts like stopping savings, taking on debt , taking out high-interest credit cards or leaving the workforce entirely. . And national paid leave standard that explicitly covers caregiving for aging parents, sick spouses, adult children with disabilities would help stabilize the workforce, protect retirement security, and reduce the cascading health care costs that come when family caregivers delay their own care.
▶ 1:39:46Mr. Resendez: It is a smart economic investment. Family caregivers contribute 49 billion hours of care valued at $1 trillion per year. Protecting their ability to stay in the workforce while caregiving is far less costly than absorbing the downstream impacts of burnout and lost tax revenue that happens when families have to leave the workforce.
▶ 1:40:08Mr. Resendez: In particular, you know caregivers face this issue over their lifetime at an estimated cost of $300,000 in lost earnings.
▶ 1:40:17Sen. Gillibrand: Will you give your opinion about how many national -- having a national paid leave program?
▶ 1:40:26Ms. Preve: It is a brilliant idea. When you look at what caregivers are faced with, there are a couple reasons we need to be focused on it. Not only because it's the right thing to do because we know that, but caregivers are paying up to $10,000 more out-of-pocket and grocery carts. A lot of people are leaving the workforce. I hear this all over the state, having to make the choice between working or leaving and staying home.
▶ 1:40:53Ms. Preve: Since covid we lost 4.6 million people do caregiving in the workforce. $44 billion in economic loss of wages. So when you look at that, you know it makes the economic standpoint but I think you also need to look at it in the larger lens of, we are losing skilled nursing facility beds across the country. In the state of new york we have lost 14 and reduced beds so you don't have a choice anymore to stay working and have a place for a loved one to go because those facilities are closing at an alarmingly -- alarming rate.
▶ 1:41:25Ms. Preve: When you look at what is happening with reimbursement rates, 44% of skilled nursing facilities indicated they are operating in the negative margins. 300 additional ones are looking at closure. It would be one thing if we had a robust infrastructure for people that had to remain in the workforce but we simply don't. So allowing those workers to be paid while they can take time off is going to increase the health and wellness of the older population and people with disabilities.
▶ 1:41:54Ms. Preve: It will also delay emergency department utilization and skilled nursing facility utilization which is driving health care costs through the roof. For us, it is a win-win because it is another relatively low cost, high-yield intervention that will support those sandwich generation caregivers.
▶ 1:42:09Sen. Gillibrand: You have opinions?
▶ 1:42:12Ms. Radka: I do. . It is so important to be able to support caregivers with paid leave. Not only does it contribute to mental health well-being of the caregiver, knowing there -- their employer offered these benefits especially when there is an early diagnosis or there is a crisis happening at home with their loved one.
▶ 1:42:35Ms. Radka: I think also, it contributes to the good environment and the culture of the workplace and loyalty from employees. That ability to be able to have the security of the job, a place to go back, and continue to earn a living while they navigate this complex world of caregiver and aging parents and older americans.
▶ 1:43:01Sen. Gillibrand: Do you want to add anything to what paid leave could have done? I'm sure that would make a difference in the challenges you faced.
▶ 1:43:08Ms. Maher: Thank you. Caregiving has really shaped nearly every professional decision I have made. I left oncology, clinical research when my oldest son was just under a year old. When I returned to work, I have the sense that a traditional job with fixed hours was not going to allow me to meet the needs of my family.
▶ 1:43:40Ms. Maher: So I'm now self-employed, which gives me flexibility to show up for my family, but it comes with real economic costs, trade-off. Huge economic trade-offs. Immediate and long-term.
▶ 1:43:57Sen. Gillibrand: And you have to pay for all of your insurance as a self-employed person.
▶ 1:44:00Ms. Maher: Yes. It is very expensive.
▶ 1:44:05Sen. Gillibrand: Do you have any thoughts?
▶ 1:44:07Mr. Protas: I have so many thoughts. Absolutely, paid leave would help caregivers relieve burnout. It would relieve the stresses they feel. I want to give a different perspective. By more robustly funding the older americans act services, we can relieve the need for caregivers to take time off as much as they currently do. Whether that is paid or unpaid.
▶ 1:44:38Mr. Protas: We have systems in place that can provide some very helpful complementary support older adults in need. Chairman scott, you talked before about the important return for investment with some of these technologies. That exists for older americans act programs services. We made it -- we make smart upfront investments to make sure families and caregivers are getting support for programs that exist. We can relieve the need for --
▶ 1:45:10Sen. Gillibrand: Emergency care, yes. One bill I worked on with senator murphy and others is to make sure when you in caregiver mode, you're getting credit for your social security so they are putting placeholder, it is as if you were were enumerated, what your pay would have been and that gets put into your social security. I would like your opinion on that bill and I would like to go a step further.
▶ 1:45:36Sen. Gillibrand: Imagine as a caregiver, if you get paid by social security to do the care. As opposed to just come a money going to -- social security going to assisted living. That you could actually be paid for the care. I would like your thoughts and comments on those ideas.
▶ 1:45:57Ms. Preve: I think they are fantastic. I think one of the things we are trying to push is that if there is a gap in someone's employment because they were a caregiver, they are probably the best employee you are ever going to get. Literally, these caregivers are schedulers, social workers, medical professionals. The skill set is immense.
▶ 1:46:17Ms. Preve: Not having that gap in the financial security paying into social security is huge and number two, being able to give an economic benefit to a caregiver that wants to do this work is a return on investment for those individuals not having to go to another higher level of care. To some of the comments today, having direct care workers is a national problem.
▶ 1:46:46Ms. Preve: It has been a problem since 1987 when it was on the front page of the new york times. That are not -- there are not enough direct care workers. Allowing organic caregivers to get paid would solve that. And keep people in homes and communities which is cheaper than forcing somebody into institutional care.
▶ 1:47:04Sen. Gillibrand: I will just go down.
▶ 1:47:05Mr. Protas: I think that would support caregivers immediately in terms of being paid through social security but it would also have benefits for the future savings for retirement. The demographic change, the shift we have had in this country with a rapidly growing senior population and fewer younger adults who will be able to contribute and care for them, is something we haven't reckoned with.
▶ 1:47:31Mr. Protas: It seems like it makes sense and is a good idea to start working towards filling the gap.
▶ 1:47:38Sen. Gillibrand: Mr. resendez?
▶ 1:47:41Mr. Resendez: Thank you fruit -- for your leadership. It would go a long way helping to stabilize financial security family and caregivers experience when they are forced to leave the workforce. That was my mom's experience and millions of other caregivers like her. We know they rack up 400,000 dollars in lost earnings over a lifetime because of that shift.
▶ 1:48:10Mr. Resendez: Being able to ensure that care, which is work, it is highly complex care. Certainly saves medicare and medicare -- and medicaid trillions of dollars annually. A credit would recognize that as work and ensure family caregivers don't risk their financial instability to provide it.
▶ 1:48:39Mr. Resendez: In terms of direct care or direct payments, this is something we know family caregivers want. Particularly lower income family caregivers. The programs that can provide direct compensation to caregivers not as a handout but for the services they provide, are things that family caregivers want and need. We are talking providing complex care, wound care, changing feeding tubes, and doing this in the backdrop of the direct care workforce shortage.
▶ 1:49:07Mr. Resendez: By 2034 it is estimated we will need 10 million direct care workforce jobs if we meet the demand for care in this country. That is likely not going to happen. We need to think about how we fill the gap. Bringing family caregivers into the process through programs like ssa payments or consumer direction, which exists in every state, structured family caregiver support programs, enable us to value the contributions of family caregivers while addressing the work horse shortages.
▶ 1:49:39Sen. Gillibrand: Ended it is so much cheaper because we know for older adults, care at home has better outcomes. You can age in place, have your care be met, institutional care is multitudes more expensive so it is the cheapest, most efficient and effective care and with the ai examples you talked about, you have the ability to have ai counterparts and telehealth counterparts.
▶ 1:50:02Sen. Gillibrand: The caregiver can meet the need that would cost three times as much if you put somebody in a nursing home or institutional care with worse outcomes. So it's good for everybody and saves more money in health care costs down the line. Saves medicare and medicaid dollars.
▶ 1:50:17Mr. Resendez: Absolutely.
▶ 1:50:19Ms. Maher: Thank you are looking at this bill and I think it really brings some ease and help to eliminate the long-term economic trade-offs that come from so many sandwich caregivers needing to leave the workforce, receiving social security credit for the caregiving that is provided helps set up sandwich caregivers for financial
▶ 1:50:51Ms. Maher: Stability in the future.
▶ 1:50:52Ms. Radka: I am so glad you asked this question because the veterans administration has a program called veterans direct care. It is implemented and provides a service to veterans where they are in the driver seat to select their caregiver and the caregiver gets paid. It could be a trusted neighbor who has a background in medicine. It could be a relative.
▶ 1:51:22Ms. Radka: It could be a professional from the community. What is important is that the veteran continues to age in place, like you mentioned. It is a reduced cost to prevent institutionalization and hospitalization and provides quality of care.
▶ 1:51:40Sen. Gillibrand: It affects mental health. It is a huge challenge. The evidence we have seen, the senior and stay in their community. She is going to thrive and do better, better outcomes, will live longer and be healthier.
▶ 1:51:57Ms. Radka: I think it is something that is important that you touched on, the leverage of technology and ai. In our community, we have implemented a system to detect fall prevention. It is discrete and radar-based.
▶ 1:52:14Ms. Radka: It is monitored 20 47 and that allows the caregiver peace of mind that if they are far away, or even a few doors down, they can be notified immediately if there is a fall.
▶ 1:52:33Ms. Radka: Know how detrimental falls can be for seniors so implementation of systems by this radar-based technology to detect falls, or implementation of programs like the hospital readmission prevention, hospitalization we have in our area, with services to give peace of mind and support caregivers with care in the home for the senior, also creates a better safety net to be able to provide care for
▶ 1:53:06Ms. Radka: Caregivers and older americans.
▶ 1:53:07Chair Scott: I would like to thank everyone for being here today. We look forward to work with members. All of our members on the committee. Senators have additional questions or statements to be added, the hearing record will be open until next wednesday at 5:00 p.m. If everyone will come up, we can get a picture.