Missouri Medicaid Work Requirements Threaten Coverage for Family Caregivers | Policy Debate Raises Fears for Disabled Individuals and In-Home Care

Tags: Medicaid work requirements, Missouri Medicaid policy, caregiver Medicaid risk, Prader-Willi syndrome care, in-home disability support, Medicaid expansion cuts

Family Caregiver Faces Medicaid Threat Despite Full-Time Care Work

Kimberly Gallagher, a full-time caregiver in Kansas City, Missouri, may soon be forced to prove she’s employed—even though the state pays her to care for her severely disabled adult son. This new bureaucratic burden is part of a broader push by federal lawmakers to impose Medicaid work requirements, potentially threatening coverage for millions of Americans.

Gallagher’s son Daniel, 31, lives with Prader-Willi syndrome and autism, conditions that require constant care. Despite the round-the-clock responsibility, Gallagher had to give up legal guardianship of Daniel years ago just to qualify for payment under Missouri’s in-home care Medicaid program.

Now, under proposed work requirements in Congress, she could face losing her own Medicaid coverage unless she meets reporting criteria, despite doing full-time care work that the state already tracks.

The Reality of Medicaid Work Requirements

New legislation being debated in Congress would require Medicaid expansion recipients to work or perform community service for 80 hours per month. The goal, according to proponents, is to reduce federal spending and push people into the workforce. Missouri is among the 40 states that opted into Medicaid expansion, which currently provides coverage to over 20 million low-income Americans.

While many family caregivers would technically be exempt from the work requirement, Gallagher likely would not be—because of the unique legal workaround she was forced into years ago. Although she’s doing qualifying work, she’ll still have to navigate paperwork or face losing her insurance, unless the state can match her to existing labor data.

Bureaucratic Failures Could Cause Mass Coverage Loss

Gallagher’s situation is far from isolated. According to research from KFF and the Urban Institute, most Medicaid recipients are already working, caregiving, attending school, or living with a disability. However, technical failures and reporting errors are expected to cause millions of people to lose coverage.

In Arkansas, when work requirements were briefly implemented in 2018, more than 18,000 people lost coverage, primarily due to confusion and procedural issues rather than actual noncompliance. Similar outcomes are feared in Missouri, which already struggles with backlogged Medicaid processing and call center understaffing.

In 2023, when COVID-era continuous coverage protections ended, 79% of the 378,000 Missourians who lost Medicaid did so for procedural reasons, not because they were ineligible.

Gallagher’s Medicaid at Risk Amid Budget Cuts

Gallagher, 59, enrolled in Medicaid after her husband’s death in 2019 and the loss of their private insurance. Now diagnosed with Hashimoto’s disease, she relies on Medicaid for medication and occasional relief caregivers who allow her time to manage her own health and assist her aging parents.

Her son’s Medicaid coverage, which funds essential in-home care, is also at risk. Many such programs are optional for states, and deep federal budget cuts could force Missouri to eliminate or reduce these services. Without them, Gallagher says, her only income would be Daniel’s Social Security, and she would be unable to provide the care he needs.

Millions Like Gallagher Could Be Affected

While only a small portion of Medicaid recipients are unemployed without valid reasons, millions could still lose their insurance due to administrative barriers and reporting errors. Gallagher and others like her highlight a key flaw in the proposed system: it doesn’t account for the realities of caregiving and punishes those who already contribute through unpaid or underpaid labor.

“I think it’s appalling,” Gallagher said. “It would destroy our lives.”