Against the backdrop of sweeping changes to U.S. federal assistance programs under the recently enacted One Big Beautiful Bill Act (OBBBA), on October 8th HPOD hosted a webinar, together with Harvard Law School’s Disabled Law Students Association (DLSA) and the Boston Center for Independent Living (BCIL), to outline the enormous human toll these changes are likely to take and ways to draw greater attention to them. Event speakers included noted scholars, advocates, and community leaders who identified different ways in which these policy changes could leave hundreds of thousands of Americans with disabilities without the supports that allow them to remain in their homes, thereby unnecessarily forcing many into nursing facilities or institutional settings and threatening persons with disabilities civil right to live independently in the community.
HPOD Executive Director Professor Michael Ashley Stein opened the event by underscoring that the planned cuts loom especially large for the disability community. Although proponents have argued that the OBBBA would streamline federal spending, Professor Stein cautioned that Medicaid cuts—though often discussed in abstract budgetary terms—translate into profound human consequences. He noted that states, faced with reduced federal funding, will be forced to make painful trade-offs: cutting benefits, restricting eligibility, or scaling back home-and-community-based services (HCBS) that make independent living possible. These decisions, he emphasized, risk pushing thousands back toward re-institutionalization, reversing decades of progress since the Supreme Court’s landmark Olmstead v. L.C. decision affirming the right to community living.
Hezzy Smith, HPOD’s Director of Advocacy Initiatives, moderated the panel discussion, which featured four speakers offering diverse personal and professional perspectives on Medicaid’s indispensable role in disability inclusion and the enormous human toll of the OBBBA’s funding cuts. Together, they explored how the OBBBA jeopardizes not only vital HCBS but also the fundamental promise of self-determination and inclusion for millions of Americans with disabilities. In this way, panellists sought to spotlight the human narratives often lost in fiscal debates—stories that illustrate what budget cuts truly mean for independence and dignity.
A Civil Right Undermined
Dr. Lisa Iezzoni is a Professor of Medicine at Harvard Medical School who has both researched and experienced health inequities as a person with disability. She began the panel discussion by contextualizing the OBBBA’s cuts within decades of uneven state implementation of Medicaid long-term services and supports. She warned that federal cuts will exacerbate disparities and erode quality of care—both in community settings and nursing facilities. Referring to the Olmstead decision, she underscored that without adequate funding, the right to live independently risks becoming “a promise in name only.” Iezzoni described how the OBBBA’s provisions, combined with recent court rulings, would “reduce the quality of care that people in nursing homes receive,” citing a 2025 Texas federal court decision vacating national nursing-staffing standards.
She then told the story of Michael, a man with quadriplegia forced into a nursing home after losing his PCA hours: “Within weeks, he had bedsores, infections, and depression. He said, ‘I feel like I’ve been buried alive.’” Before OBBBA, such outcomes were already too common. Now, Iezzoni warned, “they will become the norm.” She concluded that these compounded cuts “undermine the civil right granted by Olmstead—the right to live independently in and be a part of one’s community.”
‘When Medicaid Is Cut, We All Lose’
Dianna Hu is software engineer and President of BCIL’s Board of Trustees who depends on personal care assistants (PCAs): “I’m a software engineer because of my personal care assistants.” PCAs—workers who help with dressing, bathing, cooking, and transportation—make independent living possible for her and thousands of disabled workers like her. She described how even small changes to PCA programs can cause cascading harm: “In the past, states proposed kicking people off if they ‘didn’t use enough hours.’ Imagine losing meal prep or transfer assistance overnight.”
She underscored how the ripple effects of PCA program cuts extend to other communities. “When Medicaid is cut,” she explained, “it’s not just our lives that are disrupted—it’s the livelihoods of the people who make independent living possible.” The proposed cuts would not only endanger disabled people’s independence but also destabilize a low-wage, largely immigrant caregiving workforce. For example, “most PCAs are low-income women, immigrants, and people of color,” Hu said. “When Medicaid is cut, it’s not just our independence that’s threatened—it’s their livelihoods, too.”
Losing Independence, Losing Dignity
Anne Fracht, HPOD’s Self-Advocacy Associate, gave voice to the emotional and practical costs of instability in Medicaid funding. “Medicaid has been my passport to the world,” she said. “It’s what allows me to work, have friends, and live in my own apartment.” She described rationing medications when coverage gaps occurred, and the constant anxiety that chronic staff shortages—now worsening—might force her back into a group home. “People don’t realize,” she said, “how easily you can lose everything. I’ve seen friends end up institutionalized again just because their caregiver quit and there was no one to replace them.”
She spoke movingly about her experience navigating staff shortages that worsened after the pandemic and are now deepened by funding instability. She also raised concerns about continued access to essential medications she relies on to control her seizures. Even before the cuts, her doctors had frequently alerted her to the possibility that she might need to shift to generic medications in the future, without knowing in advance how her body would respond to them. Funding cuts will only exacerbate the risks inherent in relying on already-fragile support systems.
A System Built on Fragility
Vesper Moore, Chief Operating Officer of Kiva Centers, a peer-led mental health organization, broadened the discussion to include the mental health and peer support communities served by Kiva Centers. Cuts to HCBS, he explained, will disproportionately harm people with psychosocial disabilities and marginalized backgrounds—many of whom already struggle to stay connected to care networks. Moore also reflected on his own family’s experience with Medicaid, highlighting how the program has long been a bridge between economic survival and full participation in society. Cuts, he argued, are not abstract policy changes but “a slow dismantling of freedom.”
During the Q&A, participants asked about the ripple effects of Medicaid and immigration policy intersections, emphasizing how compounding administrative burdens and eligibility restrictions can further marginalize immigrant disabled individuals and their caregivers.
Closing Reflections
Professor Stein concluded the event by reiterating that the fight to preserve Medicaid is, fundamentally, a fight to preserve the right to live in the community—a right that, though affirmed by law, remains under constant threat by shifting political winds. “We must remember,” he said, “that behind every line item in a budget are human lives.”
Sahar Khan is a Class of 2026 LL.M. Candidate at Harvard Law School.
Event Co-Sponsors
