What is it like to be an older adult in America today? It is a question at the heart of what we do at The SCAN Foundation (TSF)—and as 2025 draws to a close, I want to share how the voices and perspectives of older adults guide our continuing work. I also want to use this opportunity to lift up what older adults are saying about their ability to find the high-quality services and supports they need and deserve so they can age with dignity.
Older adults have a clear message about what it’s like to age in America, and it is time we listen.
Americans want to age well, preferably at home and in their local community. But this fundamental desire is out of reach for millions of older adults, particularly those who have been historically underrepresented and underserved by our health care and social service systems. This includes older adults from communities of color, low-income populations, and those in rural settings which are often under-resourced. Making matters even worse, the federal government is in the process of slashing the very programs older adults depend on, including supports for home care, nutrition, and caregiver services. This will make it more difficult, not easier, for older adults to find dignity and independence in their homes and communities across the country.
Tired of “Just Surviving”
To get a better handle on what older adults are thinking and saying about the realities of aging in America today, The SCAN Foundation joined with the Public Policy Lab to support, The People Say, a groundbreaking resource amplifying the voices of older adults. Participants share real-life insights on issues like health care, caregiving, and transportation – the goal of the project – ensuring the lived experiences of aging Americans shape the policies that impact their daily lives.
As the TSF team looks toward 2026 and maps out what needs to happen to ensure that it’s possible to age well in the United States, I want to share some of those voices with you—voices full of honesty, hope, and courage. In these voices, I hear the patients I continue to see as a practicing physician. I also hear the voices of my parents, the parents of friends and colleagues, and countless caregivers too.
And what these voices are telling us is crystal clear: as a nation, we simply are not doing what we can to ensure that all older adults have the opportunity to live with dignity and independence. As Kelly from Arizona said: “I’m tired of [just] surviving… I’m not thriving, I want to be thriving.”
That word—thriving—comes up repeatedly in The People Say interviews. It means being able to afford food and medication … having someone to call when you need help … having purpose and connection. It means transportation to the grocery store, consistent and quality health care, local community centers with enriching classes and activities, and friends and family who help you live the way you want.
Critical Supports Are Hard to Find
Across these conversations, a common thread emerges: a desire for home and community-based supports that meets people where they are, honor their independence, and reflect their unique needs. AARP’s annual Home and Community Preferences Survey found that older adults overwhelmingly want to stay in their homes (75 percent) and communities (73 percent).
The older adults from The People Say reinforce this finding: Emily from Louisiana told us, “‘I’m not going anywhere, I’m not moving… I love this house.’”
But too often, what we need to age well at home and in our local community is hard to find. Jackie from Arizona shared, “I have a lot of trouble right now getting help to come… not really to take care of me, but to help me with the house cleaning.”
These stories remind us that thriving in older age isn’t only about health care; it’s about access, equity, and belonging. It’s about having a strong support system for care at home and in the community. And yet Medicaid is the only federal program that covers long-term services and support (LTSS), and states are grappling with how to deal with significant Medicaid cuts. Home and Community-Based Services are an optional program in Medicaid, and for states who need to find ways to make cuts, they may end up on the chopping block.
Impossible Tradeoffs
Earlier this year, we released an online data map developed by ATI Advisory. The data paints a picture of the 7.2 million older adults and people with disabilities who rely on Medicaid for long-term care and home and community-based services. Having this data on a county-by-county basis demonstrates that there are people who rely on these services in every community in the country, and demonstrates what is threatened by potential Medicaid reductions in HCBS.
Rita, in California, captured the impossible trade-offs many older adults are already facing, even in the absence of possible cuts: “When it comes to the summer, especially the summer, they make a choice of whether to be cool, to have an air conditioner running, pay their medical, pay their medicine, or eat.”
And it is not just the folks who are on Medicaid who are struggling. Millions of older adults, often known as the “forgotten middle,” make too much to be eligible for Medicaid, and they just can’t afford in-home care.
Earlier this year, I testified before the California Assembly, highlighting the urgent need to increase investments in long-term services and supports for California’s forgotten middle. Using data from TSF-funded research, conducted by NORC at the University of Chicago, I shared the following:
“There will be 1.6 million older adults aged 75 and older that fall within the forgotten middle in California. Nearly half of these will be people of color. The majority will experience three or more chronic conditions and limitations with activities of daily living, like walking, eating, bathing, and dressing. Caregiver support will be critical for these individuals to continue to live in community, but nearly half will most likely not have family within 10 miles to provide support. Medicare, unfortunately, does not cover long-term care, leaving those in the forgotten middle with few options for accessing needed care.”
According to NORC, by 2033 we will see more than 16 million middle income older adults in the forgotten middle nationwide.
What It Takes to Thrive
Home and community-based services can help give older adults the independence they desire, but it is relationships that make the difference in whether people can truly thrive. Celeste from Minnesota told us about learning to trust her home visitor: “When I first met her, I was looking at her sideways, not knowing if I should trust her or not to tell her anything… now I love her to come over… …. It makes me feel better….”
And Reggie in Wyoming described how a local senior center became his lifeline: “I was three years homebound because of MS [multiple sclerosis] and my stroke. I found out about the senior center and the transportation available to me, and I’ve been here for three years ever since, every day, Monday through Friday… it’s just been a lifesaver.”
These stories underscore that thriving comes not from any single program or service, but from a web of relationships and programs that make people feel seen, supported, and valued. And when it comes to supporting older adults to thrive, it’s not enough to design top-down solutions from afar; older adults need to be actively engaged in the process of defining what is going to work best for them in their local communities. That’s the focus of an initiative we support in California, Equity Community Organizing Groups (ECO Groups), Led by trusted community partners, these groups bring older adults, caregivers, family, and others together to identify the issues that matter most in their communities, and then organize, build leadership, and collaborate across sectors to drive solutions. ECO Groups are not programs delivered to communities; they are community-powered efforts that elevate local priorities and strengthen the policy and systems changes needed to address them.
From Listening to Action
As the president and CEO of The SCAN Foundation, I find that the voices we are hearing across these and other initiatives are an inspiration. They remind me of the “why” of our work. Each story offers fresh insights on how we as a funder should be investing, partnering, and shaping policy. Each story shines a light on the kinds of changes we need to make in California and nationally to support older adults to age well
Listening is where it begins, but moving to action is essential. If older adults are telling us that our current systems are not set up to offer and deliver the services and supports they want and need, then it is our collective responsibility to do better. It is time to transform the systems that shape aging in America; we must make those systems more equitable, more coordinated, and more responsive to the people and communities that rely on them.
That’s why I am so excited about a new initiative we’re supporting, the Aging & Disability Policy Lab. As we announced in November, TSF committed nearly $8 million over three years to support the Lab to develop and advance viable, people-centered policy solutions addressing the needs of low-income older adults and people with disabilities. At the heart of the Lab’s work is building on and complementing the work of others in this space and a focus on active community involvement. As I shared in our announcement:
“For decades, policymakers have discussed solutions that could make care and support more affordable, but change has been elusive. The Aging & Disability Health Policy Lab will move from talk to action, driven by people’s lived experiences, to shape real, lasting policies that help every person age with dignity and purpose.”
Through partnerships like the Lab, combined with our other efforts to ensure that we are listening to and honoring the voices and perspectives of older adults, TSF is committed to advancing solutions that support all people to age well at home and in their local communities.
This is our unrelenting focus and our mission for 2026 and beyond: to ground our work in the lived experience of the people and the communities we care so deeply about and demonstrate impact. We are incredibly grateful for your partnership and allyship in this vital work. And we wish you all the best as we look ahead to another year with a shared desire to make this a better, more caring, and more equitable world.
Thank you,
Sarita