Medicaid is top of mind these days, as Congress considers some of the most consequential changes to the program in its 60-year history—changes that would have profound implications for older adults, their caregivers, and the entire aging and disability ecosystem. Of particular concern is what might happen to Medicaid’s home- and community-based-services (HCBS) program, which funds functional supports like help with eating, bathing, and dressing that allow individuals to remain in their own homes with independence as they age. If federal proposals become law, states will be forced to address major financing gaps, and history tells us that that is when budgets get squeezed.
As many reflect on the value of Medicaid HCBS and its future, it is important to ground ourselves in what older adults, millions of whom depend upon Medicaid for their health and long-term care, tell us about what matters most in their lives. Take Tony, for example, an older adult from urban Alabama who participated in The People Say, an online qualitative database of lived experience developed by The SCAN Foundation and Public Policy Lab. Tony most values keeping his sense of purpose and independence as he ages, a desire shared by many older adults. At least 88% of individuals ages 50 to 80 feel it is important to remain in their homes for as long as possible, largely because it facilitates autonomy and independence.
Stories like Tony’s put a human face on the policies and programs that form the foundational support for vulnerable older adults in this country. And while they have the power to inspire and empower, it is often the combination of these kinds of stories with quantitative data that help paint the most holistic picture of a complex policy issue like Medicaid HCBS financing and delivery.
A Clearer Picture of Where and How Care Happens
Information is power when trying to address the needs of individuals. That’s why a new county-level data map from ATI Advisory is so important. At a time when stakeholders of all kinds are thinking about what lies ahead for Medicaid long-term services and supports (LTSS), this new tool allows for a first-of-its-kind breakdown of how many people in each county receive Medicaid LTSS, including HCBS and care provided in institutional settings like nursing homes. Segmenting LTSS data in this way will give policymakers, advocates, researchers and others a much more granular understanding of who gets Medicaid-funded long-term care in which areas and settings, supporting a more informed policy dialogue about program design and refinement.
‘HCBS infrastructure is fragile. Even though
every state provides some kind of HCBS,
it remains an “optional” benefit.’
For example, in Missouri, over 25% of Medicaid enrollees aged 65-79 use HCBS. This ranks 4th in the country (behind Minnesota, Pennsylvania, and New York). Even though Missouri has a high overall HCBS utilization among older adults, there is a surprisingly wide gap between counties in the Show Me State – ranging from 52 percent on the high end to 10.5 percent on the low end. Having a more granular breakdown of HCBS and LTSS utilization will allow policymakers to design more targeted and efficient programs for older adults and people with disabilities.
This is a big step forward for policymakers and researchers—but most importantly, for older adults and their advocates. It will help stakeholders ask better questions, tailor solutions locally, and track progress toward a more person-centered care system.
Why HCBS Matters
As the data shows in more detail than ever, there are millions of people who rely upon Medicaid HCBS for their care needs, including over 1.5 million older adults ages 65 and older. As the country continues to rapidly age and the number of family caregivers available to provide hands-on help diminishes, demand for these services will only grow.
Unfortunately, HCBS infrastructure is fragile. Even though every state provides some kind of HCBS, it remains an “optional” benefit, meaning states are not legally required to offer it under federal law (unlike Medicaid nursing home care). Likewise, scope of benefits and timely access depends upon the unique shape of state policy, local provider capacity, and direct-care worker availability. Many states maintain long waiting lists—in fact more than 700,000 people were on HCBS waitlists in 2024, with average wait times exceeding 3 years.
Access to high-quality HCBS has never been more essential. To fully grasp this need, more up-to-date data and user-friendly information is needed, because behind every data point is a real person waiting to bathe safely, to receive help preparing food, or to get support to remain in the community they have known and loved.
Elevating the People Behind the Numbers
At a time when policies are being contemplated that could fundamentally reshape Medicaid HCBS programs, we need as detailed and comprehensive a picture as possible of how these vital supports impact people’s day-to-day realities. And the work does not stop here; The SCAN Foundation is working on additional HCBS-focused projects, including developing a consensus definition for the term that can unite how diverse stakeholders talk about these programs, and a journey and process map that highlights challenges individuals face accessing care.
The new county-level data, combined with compelling first-hand stories like Tony’s, and other future projects, will make HCBS experiences more visible and visceral. They challenge us to act with greater urgency and greater precision. And they remind us that the foundation of aging well is having the choice and the ability to access help that supports true community living in the place we want to stay—our own homes.
You can watch a recent webinar, hosted by the SCAN Foundation, where policy experts discuss how changes to Medicaid could impact the ability of states to provide HCBS.
Josh Kramer serves as the Program Manager for Federal Policy at the Scan Foundation. Josh is a dedicated health policy expert with extensive experience in Medicare, Medicaid, and advancing health care solutions for older adults. He has worked across both the executive and legislative branches, shaping policies that enhance access to care and improve health outcomes for older adults and people with disabilities.
Before joining the SCAN Foundation, Josh advised former U.S. Department of Health and Human Services Secretary Xavier Becerra on Medicare payment policies, long-term care initiatives, and policies to promote health care competition. His work focused on improving hospital payment models and strengthening Medicare’s role in providing high-quality care.
Previously, he worked for the United States Senate Aging Committee for Chairman Bob Casey, where he played a key role in advancing policies related to Medicaid home and community-based services and dual-eligible beneficiaries, helping to shape initiatives that support older Americans in accessing long-term services and supports. He holds a Master’s in Public Policy from George Washington University and a Bachelor’s in Government & Law and History from Lafayette College.
Davis Baird serves as the Director of Federal Health & Aging Policy at the SCAN Foundation. For the past decade, he has been honored to work in various roles focused on improving the quality of life for vulnerable older adults and people with serious and chronic illnesses.
Prior to SCAN, he served as the Vice President of Hospice Policy & Advocacy at the National Association for Home Care & Hospice (NAHC). Previously, he was the Policy & Advocacy Manager at the Coalition to Transform Advanced Care (C-TAC), and a Program Manager at the National Association for Area Agencies on Aging (now USAging).
He’s led federal legislative strategy and engagement on end-of-life care issues, built strategic policy-focused partnerships across organizations dedicated to improving advanced illness care, and helped facilitate grant-funded work to better connect the aging and disability network with traditional health care entities. Davis has a Masters in Gerontology from the University of Southern California (USC) and a Bachelor’s in Psychology from the College of Charleston.
Photo: This photo of Tony, an older adult from Alabama who participated in The People Say (a public-interest platform to advance equitable policymaking with qualitative research), is used per that site’s terms.
Photo credit: Courtesy of The SCAN Foundation.
