The battle to protect Medicaid for older adults and people with disabilities now moves to state capitals — where care hangs in the balance.
Last July, Congress voted to pass the Budget Reconciliation Act of 2025 (H.R. 1) and enact the largest Medicaid cuts in history. For months before the vote, advocates, older adults, and people with disabilities repeatedly warned lawmakers that cutting federal Medicaid funding would put home and community-based services (HCBS) first on the chopping block. But lawmakers took to the airwaves dismissing these claims, asserting they were only cutting “wasteful” spending, and promising that key Medicaid programs, including HCBS, would be protected and even strengthened as they cut federal Medicaid funding to states by $1 trillion. This was always an empty promise.
Medicaid’s coverage of HCBS is not a luxury. For most people, it’s the only option for at-home care. HCBS help with everyday activities like dressing, bathing, cooking, and taking medications that allow older adults and people with disabilities to remain at home and part of their communities. HCBS save money too, relieving costs for families who can’t afford to pay for care out of pocket and avoiding far more expensive institutional care that Medicaid would otherwise have to pay for. Research shows people who need but don’t receive HCBS are far more likely to have to go into nursing facilities.
Ellie was a caregiver for her mother, Jane, who had Alzheimer’s, and also her father. When she was no longer able to balance her job and full-time caregiving, she left her job. Without her income, Ellie was unable to financially support both her family and her parents. Medicaid provided the lifeline she needed: paying Ellie to be her mom’s full-time caregiver under an HCBS program. “Being able to keep my mom at home where things are familiar, and to be cared for by family, was an incredible gift,” Ellie says. “Medicaid let my parents be cared for by the people who know how to care for them best, in the comfort of home, and in the last stage in their lives where they deserved to be honored and cherished.”
The real deception is lawmakers promising protection while stripping away the care people depend on.
Despite the lack of alternatives, Medicaid coverage of HCBS is optional under federal law, meaning states have discretion to cut these programs when federal funding is cut and budgets tighten. In fact, history shows that following the Great Recession, when Congress cut federal Medicaid funding, every single state responded by cutting HCBS.
Less than a year after H.R. 1 passed, states — including Colorado, Idaho, Missouri, Nebraska, Utah, and North Carolina — have already proposed cuts to Medicaid HCBS. Disabled people, older adults, and their families who spent 2025 fighting H.R. 1 at the federal level are now forced to take the fight to their state capitals, demanding that their legislators maintain the Medicaid services that enable them to live at home.
With cuts to the very Medicaid programs Congress and the Trump Administration promised to protect now a reality, some policymakers are doubling down on disingenuous justifications. They insist these cuts are rooting out waste and even fraud, not cutting care — but this claim is really only a pretext to slash benefits that support older adults and people with disabilities at home and shift costs onto families. Meanwhile, measures such as targeted audits, data‑driven oversight, and strengthened safeguards that would actually address fraud are being discounted and dismantled. The real deception is lawmakers promising protection while stripping away the care people depend on.
If lawmakers don’t fund Medicaid, our parents, friends, neighbors – all of us - pay the price.
These cuts are not an abstract line item on a spreadsheet. They will force people like Jane into institutions, push costs onto families, deepen the caregiver crisis, and fall hardest on women and communities of color. They will worsen health outcomes and ultimately increase state spending. Research shows that cuts to HCBS will prove more expensive for states by increasing nursing facility use, while significantly harming the quality of life of older adults and people with disabilities. In other words, short‑term “savings” from cuts become long‑term losses for families and public budgets alike.
So far, those air‑wave assurances—that Medicaid would remain intact for those who need it most—are nothing more than political cover for gutting Medicaid. If lawmakers are serious about those promises, they need to act. And we must demand that they do. Neither the federal government nor states are without options.
Federally, Congress could restore Medicaid funding and make real investments in our long-term care system. States could raise revenue and stop tax giveaways to the ultra-wealthy and corporations — choices that preserve care without forcing families to shoulder the cost. If lawmakers don’t fund Medicaid, our parents, friends, neighbors – all of us - pay the price.
