Medicaid Data Sharing: Immigrant Families Fear Losing Healthcare Access

The sharing of Medicaid recipient data with federal immigration authorities, a practice initiated last year following a December court ruling, is prompting fear and uncertainty among immigrant communities, even those with legal status. The policy reverses decades of assurances that personal information provided to Medicaid would remain confidential, and is leading some eligible individuals to forgo necessary healthcare.

P, a Brazilian immigrant residing in the northeastern United States, moved to the country in 2016 with her family to access specialized medical care for her 11-year-ancient daughter, who has Rett syndrome. The condition severely impacts her daughter’s ability to eat, breathe, walk, and communicate. “My daughter’s life depends on Medicaid,” P stated, requesting that only her first initial be used due to fears of potential detention. Her daughter receives extensive in-home support, physical therapy, occupational therapy, speech therapy, and aquatic therapy weekly – services that would be financially impossible without Medicaid coverage.

P explained that she and her husband have private health insurance through their employment, but rely on Medicaid to cover the costs of their daughter’s and another son’s disabilities. The prospect of data sharing with immigration authorities has created significant anxiety. “It brings us an amount of anxiety every day. Your friends are around you that are just being arrested, and you don’t know if that can happen with you, too,” she said.

While some states, including California, Illinois, and Washington, have already shared data with immigration authorities, it remains unclear whether this information has been used to identify individuals for enforcement purposes. The Department of Homeland Security (DHS) did not respond to NPR’s inquiries regarding the use of the shared data.

The shift in policy represents a significant departure from historical practice, according to Cindy Mann, who previously oversaw Medicaid during the Obama administration and is now a partner at the legal and consulting firm Manatt Health. “It’s really a 180-degree reversal of long-standing policy,” Mann said. “The promise is really to assure people who are eligible for Medicaid to perceive comfortable that they can access that care without fear of putting their immigration status into jeopardy.” This assurance is no longer explicitly stated on government websites.

Historically, Medicaid has only shared personal data with the federal government for oversight purposes, such as verifying eligibility. The Department of Health and Human Services (HHS) maintains that the current data requests fall within this scope. However, the change is causing concern among patients who are questioning the safety of remaining enrolled in the program.

Pattie Lopez, who manages the health insurance department at Venice Family Clinic in Los Angeles, has been fielding calls from patients worried about the implications of the new policy. One patient, fearing potential repercussions, initially dis-enrolled from Medicaid but later re-enrolled, recognizing the necessity of continued coverage despite the risk. “She found it incredibly hard to go without health coverage, and so she came back. And, you know, she’s like, now I’m here taking a risk given that, you know, I need my medication,” Lopez recounted.

Eighty percent of the Venice Family Clinic’s patients rely on Medicaid. A decline in enrollment could place a significant financial strain on the clinic, which has already implemented a hiring freeze and is exploring other cost-cutting measures.

Andrew Cohen, an attorney with Health Law Advocates in Massachusetts, suggests that for individuals already enrolled in Medicaid or other programs, the federal government may already possess their information. “So remaining on coverage actually may be no additional risk,” Cohen stated. “There are instances where it may not be safe for everybody.”

In December, a judge issued a temporary limitation on Medicaid data-sharing in 22 states that had filed lawsuits, including Arizona, Michigan, and New Jersey. The restriction applies only to individuals unlawfully present in the country. In the remaining 28 states, including Texas, Kentucky, and Utah, no such limitations are in place.