NASHVILLE, TN — Last week Gov. Bill Lee’s administration issued an ultimatum to hundreds of immigrant families in Tennessee: If parents wished to keep their disabled and critically ill children on a last-resort medical program, their personal information would be turned over to a state agency that shares data with Immigration and Customs Enforcement.
The notice, targeting immigrant children without permanent legal status, came with a June 30 deadline and no transition plan for young patients who rely on ventilators and feeding tubes, or who are midway through chemotherapy treatment — healthcare that, until now, has been provided through the Children’s Special Services program.
The decision prompted a sprint last week by public health workers to figure out ongoing care.
Democratic lawmakers pressed the Tennessee Department of Health for details.
The Tennessee Chapter of the American Academy of Pediatrics urged pediatricians across the state to send urgent letters and sign a petition.
The Tennessee Justice Center, a nonprofit legal advocacy firm, searched for plaintiffs willing to join a legal challenge.
As of Friday, they had not found a family willing to join.
Even if parents are not fully identified in public court filings, their identities would have to be shared with lawyers defending the state during the course of litigation, said Michele Johnson, executive director.
Families are “so scared,” Johnson said.
“I can’t overstate the impact we’re seeing,” Dr. Morgan McDonald, who sits on Nashville’s Metro Health Board, said during a Thursday board meeting.
“We’re seeing nurses scramble for ventilators, for feeding tubes, to try (to obtain) metabolic formula, to try to keep kids out of the hospital, to try to keep kids alive,” she said.
Public health staff have been “working around the clock to not let any child fall through the cracks, but the resources are fewer and fewer for these families,” she said.
About 400 families enrolled in the Children’s Special Services program received notice last week, according to an email from the Tennessee Department of Health — shared with the Lookout — that was sent from the state health department to Sen. Heidi Campbell, a Nashville Democrat.
The email came in response to Campbell’s demand for more details from the department last week.
The department did not respond to the Lookout’s request for more information about the letters last week.
Among those impacted is a 10-year-old boy with complex medical conditions including spina bifida, autism and kidney disease who has been enrolled in Children’s Special Services for seven years, according to his mother, Gabriella.
She asked to be identified only by her first name because she fears her family being targeted by immigration officials for speaking publicly.
Their asylum claim is pending.
On Saturday, Gabriella sat at her kitchen table as her son sat in his wheelchair in front of the TV watching cartoons.
She and her husband have decided to withdraw their son from the program, she said.
Her 8-year-old daughter and 4-year-old son put their arms around their mother as she dropped her face into her hands and cried.
“We are not comfortable today,” she said.
“We have no other choice.
We have to take him from Children’s Special Services.
Because I see in the news that they don’t care.
I see them taking a mother with a baby.
I don’t want to put the life of my children in their hands.
I don’t want immigration to come to my house.
I don’t want them to put us in detention.
In detention (my son) wouldn’t get any care.”
“I don’t understand why they are doing this to these kids, not just my own.”
She paused as she searched for the right words in English, taking out her phone to type into a translation program.
“They are innocent children,” the translation text read.
