Editor’s Note: The John A. Hartford Foundation is collaborating with ASA to advance equity in aging by supporting ASA RISE, a 20-week social justice and leadership program for rising leaders of color in aging, and via the development and dissemination of equity-related, partnership-based thought leadership through ASA’s Generations platform. This blog post is part of that series.
Everyone has the right to live in the community and age in place, free of barriers to housing and healthcare. Medicaid enables eligible people to access healthcare services, preventive care and the Home and Community-based Services (HCBS) needed to live healthy lives. In anticipation of Medicaid cuts, states and local organizations have begun anticipating impacts to service delivery.
Like many, my family and I also have had to grapple with how impacts to Medicaid will affect my grandmother and our family dynamics. At age 93, she continues to live in the community among her family. But over the past few months her services, provided by the local Aging Services Access Point, have been reduced. The decision to shift her service delivery was beyond our control, yet the impact echoed throughout the family. Over the past decade, my grandmother has used the same direct care worker to support her activities of daily living. When that person’s hours were cut in half, the family was offered no additional support options, so we assumed responsibility to provide additional caregiving and direct care support to preserve her quality of life.
In my culture, older family members remain at home, if possible. The burden of responsibility weighed heavily on us as we sought to increase our circle of support while honoring her goal to live independently. Unfortunately, my grandmother’s circumstance is not unique.
States across the nation have begun to witness shifts in service delivery as a result of the proposed federal budget. Advocates, people with disabilities, and families across the aging and disability networks must be thoughtfully engaged in research to effectively lend their voices and uplift the services and supports most important to them.
Medicaid provides health coverage to 7.2 million low-income older adults who are also enrolled in Medicare, and provides coverage to 4.8 million people with disabilities who are enrolled in Medicare. Gaps in Medicaid and HCBS impact service delivery, access to direct care and community-living, and contribute to lasting impacts on health, economics, and community participation of individuals and families. Diverse stakeholders throughout the field of aging must be prepared to continue to meet the needs of individuals and families as people with disabilities and older adults continue to age, use healthcare services, and live longer in the community.
‘Data is immensely valuable for policymakers, service providers and state advocates to effectively measure their impact and prepare for the future of care delivery.’
While Medicaid defense remains effective, it is time to meaningfully and thoughtfully center the voices of people with disabilities and older adults to uplift diverse aging experiences across cultures. “Nothing about us without us,” is a motto often used in the disability community and advocacy spaces to indicate inclusion, representation, and visibility of persons with disabilities in all aspects of life. This motto has shaped my career as an advocate, convener and researcher as I have learned the power of community engagement, the strength of collective voice, and the power of storytelling.
Research shows barriers to Medicaid HCBS. As a senior project manager at Brandeis University, I evaluate community-living outcomes of people of color with disabilities across the lifespan. I uplift research training models for diverse stakeholders, strengthen community engagement, and center disability justice in public health research. This work is increasingly important as people live longer and continue to age in place in their communities. Also, there is a need to address caregiving and family support. Data is immensely valuable for policymakers, service providers and state advocates to effectively measure their impact and prepare for the future of care delivery.
Because the full extent of the budget’s impact on Medicaid remains uncertain, community-based research and data quality will continue to be vital to effectively measure HCBS need and use at local, state and national levels, as well as to effectively reduce harm and address unmet needs for people with disabilities and older adults for years to come.
Although there is a small but growing number of researchers of color with disabilities, I joined ASA to expand my network to further bridge the connection between research and the community. The ASA RISE program centers leadership and mentorship and fosters an environment for growth. I am honored to have joined ASA RISE and its cohort of passionate leaders of color who will shift the field of aging.
ASA shares my commitment to addressing systemic barriers to aging and I am proud to share in its commitment to foster an aging network that is inclusive, responsive, and equitably addresses community needs. I aim to shift the landscape of aging services, challenge perceptions of aging, uplift culture, and work collectively to center community voices in research, policy, systems and advocacy to preserve continuity of care and center harm reduction for those most at risk.
Additional research is needed to effectively evaluate Medicaid impact, assess barriers to HCBS, identify best practices, and uplift community-centered recommendations for the next generations. As a qualitative researcher, I explore barriers in community living for people of color and aim to advance participation in research by cultivating relationships with diverse stakeholders, which will strengthen engagement, uplift diverse stories, and center recommendations of persons of color in research. I want to inspire the next generation of researchers to reimagine study recruitment and bolster participant engagement by cultivating partnerships across sectors to advance understanding of community-living outcomes and experiences of persons with disabilities across the lifespan.
As a proud ASA RISE alum, I am prepared for leadership roles in the field of aging. I look forward to leading the work, cultivating relationships with diverse stakeholders to center impact-driven recommendations and those rooted in community voices, to reduce harm and brighten the future of care delivery for older adults and people with disabilities.
Jennifer Lee-Rambharose, MS, is senior project manager at Brandeis University in Waltham, Mass.
Photo caption: Most of the ASA RISE Cohort 4 in Orlando, Fla., at On Aging 2025. Author Jennifer Lee-Rambharose is at the center of the front row in multi-colored glasses.
