Dear Chairman Scott and Ranking Member Gillibrand,
The SCAN Foundation appreciates the opportunity to submit this statement for the record in relation to the Committee’s December 3, 2025 hearing, “Aging in Place: The Impact of Community during the Holidays.”
The SCAN Foundation is a California and nationally-focused, non-partisan foundation that works towards a society where all of us can age well with purpose. The SCAN Foundation integrates policy and programmatic grantmaking with mission-aligned impact investing to drive near-term solutions and long-term, systems level reforms. We pursue this vision by igniting bold and equitable changes in how older adults age in both home and community.
We appreciate the Committee’s interest in elevating the importance of programs that help older adults and people with disabilities remain in their own homes and communities. This starts with ensuring that these individuals can access the long-term services and supports (LTSS) they need, especially those offered through the Older Americans Act (OAA) and through Medicaid’s home and community-based services (HCBS) program. Medicaid HCBS is the largest payer of home care in the country and makes it possible for millions of low-income Americans to receive the kind of help with daily activities that keeps them from having to move to an institutional setting, which can reduce health care system costs while improving individual care experiences. Indeed, we know that most older adults want to age in their own homes and communities, and we need more investments and policy support to ensure those preferences can be honored now and, in the future, when demand for long term care in the home will rise exponentially.
And while it is critical to continue to bolster the Medicaid HCBS and OAA systems and workforce, policy solutions to support the home care needs of middle-income Americans and their families, those in the so-called “Forgotten Middle”, are also desperately needed. This group, which will grow to 16 million people by 2033, is ineligible for Medicaid, yet still unable to afford the health, home care, and housing services that can help them remain in their own communities as they age. There are virtually no public programs to assist these older adults and their families, and with the median annual cost of private pay home care hitting nearly $78,000 in 2024, most cannot afford paid help, and have to rely on over-burdened family caregivers, increasing numbers of whom are reducing their own working hours or dropping out of the workforce altogether to help take care of their loved ones.
The country needs bold new initiatives in order to address the exploding demand for home- and community-based care of all kinds. Fortunately, there is bipartisan support for a host of public policies to help pay for the costs of long-term care and caregiving, many of which would involve an expanded role for the federal government. Likewise, policymakers do not need to “start from scratch” when it comes to designing the details of specific proposals; over the last 40 years, there have been many ideas put forward, by Congress, researchers, advocates, and other LTSS stakeholders.
By recognizing the urgent need for LTSS and HCBS solutions, committing to act, and using the lived experiences and feedback of actual users of long-term care to guide its work, Congress can help millions of older adults and people with disabilities stay safe, secure, and supported in their homes and communities.
There is a Rich History of LTSS Policy Solution Development
Data and the lived experience of millions of families across the country indicate that people struggle to pay for and coordinate the LTSS that supports daily living activities like bathing, eating, and dressing. These services are not covered by traditional Medicare, even though many Americans incorrectly assume they are. Medicaid remains the country’s largest financing source for HCBS, and six out of ten Americans plan to rely on Medicaid to meet their long-term care needs in the future. But Medicaid HCBS is chronically underfunded, with estimates of nearly 600,000 individuals on waitlists for the services in 2025. At the same time, recent federal legislative changes to Medicaid could strain the HCBS system even further, as states grapple with hard decisions about whether and how to cut their HCBS programs to make up for financing shortfalls. This policy shift—combined with an aging population, long-term care workforce shortages, fewer available family caregivers, and a growing retirement crisis in which most people lack adequate savings for future care—has created a significant gap in America’s care delivery system. Addressing this gap is essential to ensuring that older adults and family caregivers can access the support they need.
Luckily, Congress has, at various times, considered legislation to make LTSS more accessible and affordable. Similarly, researchers and aging and disability advocates have developed policy concepts to further address the need. The SCAN Foundation supported the development of a new, online Compendium of Financing Options for Long-Term Care Services and Supports, which provides a comprehensive overview of the public and private financing solutions proposed over the past three decades that can help inform current and future policymaking. We hope it can serve as a helpful resource to support Congress as it considers policies to bolster the long-term care and HCBS systems.
Incorporating Lived Experience in Policy Development
TSF strongly believes that policies and programs designed for older adults and people with disabilities must be informed by their lived experiences. Health and aging policies are usually designed from the system perspective, rather than that of the person receiving the care. Research and policy development on older adults often fails to meaningfully incorporate their direct feedback, and only rarely prioritizes the voices of underserved populations.
To address these shortcomings, The SCAN Foundation, in collaboration with the Public Policy Lab, built an online qualitative database of older adult interviews called The People Say. This tool is designed to ensure that the lived experiences of underserved older adults, including those of color, those who are low income, and/or those who live in rural areas, are captured, coded, and tied to relevant policy and program topics, such as transportation, care navigation, financial supports, and more. The People Say has data from over 140 interviews with older adults and their caretakers talking about their lives and what matters most to them. It is designed in a user-friendly way so that those creating and refining policy, programs, or practices, including access to HCBS and supports for caregivers, can easily search for and access targeted multimedia that speaks to the unique perspectives of older adults and caregivers.
On The People Say, there are many examples of older adults describing their experiences with LTSS and HCBS. For example, one older adult from urban California tried to get in-home services but, in her words, “It was almost impossible to find someone, and it was impossible for me to keep following through. I surrendered.” This story is all too common among older adults, most of whom have to rely on family members to provide unpaid care or provide it themselves. As Anna, from Louisiana, who cares for her husband, explains “I have to take care of myself and also take care of him [my husband]. And taking care of him is is a job by itself, because I have to make sure he take his medicine and make sure he take a bath, just make sure he eats, and it’s hard…. If I go somewhere, I have to take him with me.” Stories like these demonstrate that there is a need for policies involving LTSS to more intentionally solicit older adults’ real-world experiences. As another interviewee powerfully stated, “Until you are there as an older adult or you are taking care of an older, elderly parent, you have no idea what that world looks like. And you didn’t know how they got there or how you got there. And so for policymakers, they really need to be in tune with what they don’t see. How can you be in more tune to what you don’t see? And are you asking questions of those who are not the ones who are speaking up for themselves?“.
Multiple and Sometimes Conflicting Definitions of “HCBS” Can Frustrate Policy Progress
The absence of a clear, universally accepted definition for HCBS creates barriers to service alignment, quality measurement, cross-agency planning, and coherent policymaking. This definitional variability undermines efforts to answer essential questions about HCBS, such as: “What works, for whom, and in which circumstances?” Without clarity on the elements, values, and intended outcomes of HCBS, systems struggle to coordinate services, measure impact, and direct resources equitably—particularly for underserved populations, including older adults with lower incomes and those living in geographically isolated regions.
The SCAN Foundation believes that establishing a shared understanding of what HCBS encompasses—and highlighting the current inconsistencies in how it is defined— will strengthen efforts to improve HCBS and help ensure that organizations, policymakers, and individuals are pushing for progress with a unified voice. To this end, The SCAN Foundation is exploring work around how best to create a consensus definition for HCBS, and we look forward to sharing findings with the Committee and other stakeholders in the future.
Leveraging Multi-Sector Plans for Aging (MPAs) to Support Community Living
Some states are using Multi-Sector Plans on Aging (MPAs) to find creative solutions to help their older adults age in place. MPAs are cross-sector policy and program blueprints that help improve coordination across state policymakers and private stakeholders to ensure older adults can live with dignity in the setting they choose. For example, implementation of California’s MPA has improved access to HCBS by using data-driven analyses to identify gaps in both Medicaid and non-Medicaid services, and by implementing programs like CalAIM’s Community Supports and Enhanced Care Management to address social needs and complex care transitions. 12 states currently have MPAs in place, and many more are actively exploring creating their own. Drawing from state MPA progress, there have been encouraging federal efforts to create a national plan on aging as well, both at the congressional and administration levels.
Keeping Older Adults at Home Makes Economic Sense
In the year of the 60th anniversary of the three cornerstone programs that have shaped aging in America—Medicare, Medicaid and the OAA—it is important to reemphasize how import these programs help older adults and people with disabilities stay at home and save the government money in the process. For instance, every dollar invested in services through the OAA generates a $3.39 return on investment. Ensuring robust funding for programs like HCBS helps prevent costly acute-care use, keeps family caregivers in the workforce, improves quality of life, and strengthens the broader economy by supporting a healthier, more stable older population. Studies have found that caregiving responsibilities have reduced work productivity by one-third, hurting the economic stability of the caregiver and their family as well as the overall economy. Protecting these programs is not only important for individuals’ well-being but also carries significant economic benefits.
Conclusion
Thank you for the Committee’s continued interest in home- and community-based care and the work you are doing for the for the millions of Americans that use Medicaid HCBS and OAA programs. Additionally, we commend the Committee for continuing to elevate the lived experience individuals at its hearings. We look forward to our continued collaborations with the Committee and elevating the voices of older adults in policy and program development.