Following a CNN report on Florida's decision to remove more than 13,000 children from a Medicaid program for very sick kids, Sen. Bill Nelson and Rep. Kathy Castor are calling on the Department of Health to investigate the decision.
In 2015, the state pulled more than 13,000 children out of the Children’s Medical Services, or CMS programs, a part of Florida’s Medicaid.
The children were moved to other Medicaid insurance plans that didn’t offer specialized care for sick children.
In a letter to Department of Health and Human Services Secretary Dr. Thomas Price Castor, Nelson called on the department "'to exercise its oversight and enforcement authority' to protect more than 13,000 Florida children with special needs who were improperly removed from the state’s specialized care program."
During its investigation, News 6 partner CNN spoke to a St. Augustine mother last month who said removing her son from CMS had devastating consequences. LJ Stroud was 11 years old when he was pulled from the program. He was days away from a series of surgeries that would remove a tooth from the roof of his mouth.
LJ was born with severe cleft lip and palate, which caused the strange eruption, as well as constant ear infections.
Meredith Stroud said she couldn't find surgeons on her son LJ’s new insurance plan who were willing to do the highly-specialized procedures he needed. Over the next seven months, her son lost 10 pounds, quit the football team and often missed school.
"He was in pain every day," Stroud told CNN. "I just felt so helpless. It's such a horrible feeling where you can't help your kid."
LJ and his family sued the state, and he was eventually placed back on Children’s Medical Services.
During the CNN investigation, pediatricians expressed their concerns and frustration with the decision to switch more than 13,000 children to insurance that did not cover their medical needs.
The data analysis the state used to justify switching the children is "inaccurate" and "bizarre," according to the researcher who wrote the software used in that analysis.
The screening tool Florida used to select which children would be kicked off the program has been called "completely invalid" and "a perversion of science" by top experts in children with special health care needs.
Then, in fall 2015, a state administrative law judge ruled that the Department of Health should stop using the screening tool because it was unlawful. But even after the judge issued his decision, the department didn't automatically re-enroll the children, or even reach out to the families directly to let them know that re-enrollment was a possibility.
The Florida Department of Health said in a statement after the CNN story ran that the screening tool has not been used in two years.
"It is our understanding, however, that despite this decision, the state has still not notified all of the families whose children were improperly removed from the program," the letter sent to the Department of Health secretary from Nelson and Castor said.
A Florida Department of Health spokesperson told News 6 families were contacted in July.
Parents and Florida pediatricians raised questions about the reasons why Florida's Republican administration switched the children's health plans. They question whether it was to financially reward insurance companies that had donated millions of dollars to the Republican Party of Florida.
"This was a way for the politicians to repay the entities that had contributed to their political campaigns and their political success, and it's the children who suffered," Dr. Louis St. Petery, former executive vice president of the Florida chapter of the American Academy of Pediatrics, said.
The department ardently denies those allegations.
"According to the state’s Medicaid agency (Agency for Health Care Administration), it is not true that health insurers benefit from having higher risk patients on their plans," the Florida Department of Health said in a news release.
Nelson and Castor said in July, 6,000 more families received notices that their children could be rescreened for eligibility to the CMS insurance program.
"We have seen over the years that the State of Florida has evaded its legal responsibilities in many instances to ensure access to care for the children of Florida," the letter read. "We urge HHS to exercise its oversight and enforcement authority to ensure that children in Florida are appropriately enrolled in the plan that best fits their needs."
In an email to News 6, the Florida Department of Health said that it "is 100 percent focused on making sure the programs we manage are providing quality care-- especially to children. Any assertion that children have been denied care is absolutely false."
Editor's note: This story has been updated with the Florida Department of Health's response to Aug. 18 CNN story.