The PDF in which this article appear can be found in Bifocal Vol. 46 Issue 4.
April 29, 2025
Aging at Home and Defending Medicaid: A Conversation During Uncertain Times
Nicole Shannon, J.D.
Though much is uncertain in our current era, at least one thing is unchanged: the desire of Americans to age in place. In an AARP report published just a few months ago, 75% of adults 50-plus wish to remain in their homes as they age, with that number even higher among adults 65-plus. But with Medicaid on the chopping block, the primary key to aging at home is on shaky ground.
Aging at home is not a high-minded ideal—it is a legal imperative. Last year, we celebrated 25th anniversary of Olmstead v L.C., the landmark decision that held that the American with Disabilities Act prohibits certain institutional segregation of people with disabilities. Even after over 25 years, the dream of community integration is far from realized. Dozens of states have active consent decrees, settlement agreements, litigation, or similar under Olmstead, including numerous cases involving needless institutionalization of adults in nursing homes who could instead be living in the community.
We are facing an existential crisis. In “normal” times, advocacy for aging in place has focused on expanding Medicaid Home and Community Based Services (HCBS) through policy advocacy, Olmstead litigation, and traditional estate and Medicaid planning. But today, advocates are fighting to defend the very existence of Medicaid—and with it, the ability to age in at home.
Medicaid is the main funding source for the HCBS that enables low-income older adults and adults with disabilities to live in the community. Though federal Medicaid law requires that states cover mandatory benefits such as nursing home services, HCBS can be limited by states. With a cut in Medicaid funds, discretionary programs such as HCBS are likely to be first on the chopping block. States may choose to cut provider payment rates to make up for the shortfall. The existing direct care workforce shortage will be exacerbated, with fewer people willing to work for even more meager wages.
Without these HCBS vital programs, people who want to age at home will face potentially insurmountable barriers that jeopardize both their safety and autonomy. The remaining choices will include relying on friends and family members to fill in the gaps, going without necessary care, or ultimately moving into an institutional setting. Many people will find themselves in risky situations with under-trained (or untrained) caregivers. Those caregivers will give up paid work, go without respite, and be more susceptible to burnout. All this, to attempt to age at home.
Those of us in the law and aging network have a responsibility to protect Medicaid. Elder and disability rights organizations across the country are sounding the alarm and putting together resources. Justice in Aging frequently updates Medicaid defense resources. The Kaiser Family Foundation has a deep well of data on Medicaid and how changes can impact older adults. The National Health Law Program is amplifying voices of Medicaid beneficiaries. And a coalition of about 100 organizations such as the AARP and The Arc have banded together to create the Modern Medicaid Alliance to protect Medicaid.
All of this can feel overwhelming, but we can do something if we work together and focus on our communities. For advocates searching for next steps in protecting Medicaid, these common themes are emerging:
- Put lived experience front and center. With your client’s permission, seek out stories from your clients on how cuts to Medicaid will impact their daily lives. Concrete examples from your clients are powerful reminders to policy makers that these are not numbers on a page—these are our community members.
- Be clear that these “reforms” are cuts to Medicaid, and older adults and adults with disabilities cannot be shielded. States will be forced to cut benefits, eligibility, or both. The Home and Community Based Services crucial to aging at home are likely to be some of the first cuts states make.
- Act early and often by contacting your state and local officials. Every member of the law and aging network has information to hear. The federal budget process is likely to stretch on, but the time is now to tell elected officials about the true cost of Medicaid cuts.
- Work together with others in the law and aging network. Advocacy is a team sport. When it feels impossible, overwhelming, or confusing, lean on other advocates for guidance, inspiration, and community.
We must answer the call to protect the hard-fought progress and continue moving forward. Aging at home is a key to independence and autonomy.