Red state moves to strip life-sustaining care from critically ill immigrant children

Scores of low-income immigrant children living with critical illnesses could soon lose access to life-sustaining medical care after Tennessee officials directed public health departments to verify their immigration status and report to the federal government, according to the Tennessee Justice Center.

The Tennessee Department of Health is targeting Children’s Special Services, a last-resort public health insurance program for kids with disabilities and life-threatening illnesses, such as cancer, spina bifida and terminal diseases.

The state agency last week said it planned to inform families as soon as this week of a new policy requiring immigration status verification as a condition of continuing benefits according to Michele Johnson, executive director of the Tennessee Justice Center.

The program, which relies on a combination of federal and state funding, is administered by local departments of public health across Tennessee. For more than 50 years, it has served children with severe disabilities who need ongoing care and have no other insurance, regardless of immigration status.

In Middle Tennessee, about 100 children without legal immigration status are at risk of losing ongoing medical coverage, according to Metro Department of Public Health officials.

How many children statewide could be impacted isn’t clear. The Tennessee Department of Health did not respond to requests for information or comment.

The program used to assist young people up to age 21. Earlier this year, the state health department directed local public health agencies to disenroll anyone 18 or older.

The Metro Nashville Health Department cut seven young adults from the program, but by last month had found alternatives for them, D’Yuanna Allen-Robb, director of the department’s Maternal Child and Adolescent Health Division said during a May health board meeting. It is unknown how many were impacted statewide.

Children do not have similar alternative safety net services in Tennessee.

The department did not address what Johnson said were unanswered questions about the scope of the immigration status checks. It is unclear whether the state plans to disenroll children whose families cannot provide proof of legal immigration status or report them to immigration officials. The Tennessee Department of Health did not respond to questions seeking clarity.

Either scenario could jeopardize the health and welfare of children with severe medical conditions who, along with their families, could become targets of immigration enforcement.

“It’s a huge threat to life for kids with significant disabilities and for families that can’t afford to support their kids,” Dr. Morgan McDonald, a member of the Metro Nashville Board of Health, said in a meeting on May 14.

Among those impacted is a 10-year-old boy who was born with spina bifida, a congenital disorder that confines him to a wheelchair and requires near-monthly trips to the doctor or emergency room, according to his mother, Gabriella. She asked only to be identified by her first name because she fears the family could be targeted by immigration officials for speaking out — especially given their pending asylum case.

The family arrived in the United States when the boy was 3 years old, and since then they’ve sought medical care for him through the Children’s Special Services program.

Last year, when he temporarily lost coverage for several months — for reasons his mother said she did not understand — a support group of fellow mothers pitched in to buy her in-home supplies. But the experience was agonizing, she said.

“It was horrible then,” Gabriella said. “Now? This leaves us defenseless and adrift.”

Gabriella said she and her husband are just six months away from a final decision on their asylum claim. She worries not only about losing her son’s lifeline to life-sustaining medical care but the consequences for their case if they are reported to Immigration and Customs Enforcement.

“If we go back to Honduras, he’s not going to make it,” Gabriella said.

“We are afraid. We were afraid before this. I’m afraid all the time. I’m afraid to go outside. I’m afraid they’ll take me without my kid.” She wept as she spoke.

The Department of Health’s decision to require immigration status reporting in the program last week forced a scramble among healthcare advocates, according to Michele Johnson, executive director of the nonprofit Tennessee Justice Center, which advocates for access to healthcare.

Whether the department’s directive requires reporting of immigrants without legal status, disenrollment or both, it “should be immediately rescinded as it is unlawful,” the Tennessee Justice Center said in a letter to the state’s Department of Health Wednesday.

The letter, sent to Mary Katherine Bratton, general counsel for the Tennessee Department of Health, notes that recently enacted Tennessee legislation requiring immigration verification of those seeking public benefits explicitly applies only to those 18 and older.

The directive also conflicts with federal guidance issued last year that limits federal public benefits to people without citizenship status, according to the Justice Center.

The Children’s Special Services program is funded through a Maternal and Child Health Services block grant, which is not included in the federal guidance, the letter said. The 24-page federal guidance, issued in July 2025, includes a list of federally funded programs that the Trump administration now includes in its definition of “federal public benefits” that are unavailable to immigrants without legal status. The Maternal and Child Health Services block grant is not included in the list.

Johnson said the directive from the state leaves families with “no good options.”

“We’re really concerned in this environment that our clients are having to risk their childrens’ lives,” Johnson said.

“If they withdraw from the program, they almost certainly will die without the care they need,” she said. “If they stay on the program, and ICE comes and gets them and their kids, they almost certainly will die because they don’t get the healthcare they need in Alligator Alcatraz or any number of other places.” Alligator Alcatraz refers to an immigrant detention facility in the Florida Everglades.

Johnson said her organization expected to file a legal challenge to the directive as soon as they find affected families willing to join as plaintiffs. But, she said, it’s challenging because so many people are afraid they will be targeted by federal immigration officials if they join a lawsuit.