Emily D. Tisdale: Work rules put caregivers at risk — and could hurt all of us

Big changes are coming to the Medicaid system next year — and I fear they will quietly but profoundly decimate the unpaid workforce that already props up our long-term-care system.

At first glance, the new requirements seem like a no-brainer — force non-disabled adults on Medicaid to work or volunteer at least 20 hours a week to encourage employment and reduce public spending. But did you know that, according to the AARP, nearly 8 million people who work as unpaid caregivers to a loved one rely on Medicaid for their insurance?

These caregivers are not disconnected from work; they are performing essential labor every day. The result of forcing people to choose between going back to work or providing lifesaving care to their loved one will be higher health care costs for everyone, thanks to an increased demand for paid caretakers and institutional care.

The AARP reports nearly one in five Americans ages 50–64 rely on Medicaid, and many have chronic health conditions or disabilities that make consistent employment difficult. Many are also vital caregivers for their family, whether for their parents or sometimes children and grandchildren — sometimes both. This is the “sandwich generation,” stretched thin even before new requirements are imposed. But starting in January — and in a few states, even earlier — the 2025 Budget Reconciliation Act will require an estimated 18 million adults on Medicaid to work or participate in approved community activities to maintain their coverage.

This change will have real consequences for families. Take, for example, a 55-year-old daughter who has reduced her employment to take care of her father with dementia or a 42-year-old nephew who is balancing his wife’s minimum-wage job and family responsibilities with caring for his aunt with multiple chronic conditions. New work and volunteer requirements, designed without them in mind, turn them into invisible casualties — to the tune of nearly 5 million people by 2034, according to the Congressional Budget Office. Their daily caregiving makes it possible for older adults to remain safely at home, but it might not count as “work” under these requirements.

Family caregivers provide essential, unpaid labor. According to AARP, more than 40 million Americans provide billions of hours of care each year, valued at roughly $600 billion. Many have already reduced work hours, declined promotions or left the workforce entirely. Their contribution is not theoretical — it prevents emergency room visits, delays or avoids nursing home placement and reduces the strain on an already overburdened health care system.

Work requirements risk stripping coverage from people who are unable to work — not because they are unwilling to work but because caregiving responsibilities and their own health or physical limitations can make consistent employment realistically impossible. Ironically, this is the same population most likely to be providing intensive care for aging parents, spouses, children with disabilities and other loved ones. As a result, the very people keeping older adults safe in their homes might lose their own health care coverage.

Adding Medicaid work-reporting requirements to this already fragile balancing act risks undermining the system that makes aging in the community possible. Caregivers might be forced to choose between completing monthly paperwork to maintain coverage or continuing the hands-on care that keeps loved ones stable. For families already at the margin, the administrative burden alone can push them to a breaking point.

The irony is stark: These requirements might increase the very costs they aim to control. When caregivers must return to work or increase formal hours to maintain coverage, older adults lose essential support. The daughter who once managed medications and prevented falls is now working full time, leaving her mother at higher risk of hospitalization. The nephew who once provided daily care must step back, accelerating the need for paid home care or nursing home placement — services Medicaid ultimately pays for at far greater expense.

Medicaid exists to provide access to health care, not to penalize the unpaid labor that sustains families and communities. As states design their implementation plans, they must include meaningful protections for family caregivers: clear exemptions, simplified documentation and recognition that caregiving itself is a form of community engagement. Aging in the community works best when caregivers are supported, not sidelined.

As states design and implement Medicaid work requirements, policymakers must explicitly recognize family caregiving as legitimate community engagement, create clear caregiver exemptions and minimize administrative barriers that threaten coverage. The question is not whether work matters — but whether we will protect the essential work family caregivers already do to make aging with dignity possible.•

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Tisdale is executive director of the University of Indianapolis Center for Aging & Community.tisdale