St. Augustine, Florida (CNN)When he was 11 years old, LJ Stroud of St. Augustine, Florida, had a tooth emerge in a place where no tooth belongs: the roof of his mouth.
LJ was born with severe cleft lip and palate, which explained the strange eruption, as well as the constant ear infections that no antibiotic could remedy.
With her son in terrible pain, Meredith Stroud arranged for surgeries to fix his problems.
But just days before the procedures were to take place, the surgeons' office called to cancel them.
Like nearly half of all children in Florida, LJ is on Medicaid, which has several types of insurance plans. The state had switched LJ to a new plan, and his surgeons didn't take it.
LJ wasn't alone. In the spring and summer of 2015, the state switched more than 13,000 children out of a highly respected program called Children's Medical Services, or CMS, a part of Florida Medicaid. Children on this plan have serious health problems including birth defects, heart disease, diabetes and blindness.
The state moved the children to other Medicaid insurance plans that don't specialize in caring for very sick children.
Stroud says that for her son, the consequences were devastating. Despite hours of phone calls, she says, she couldn't find surgeons on his new insurance plan 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 said. "I just felt so helpless. It's such a horrible feeling where you can't help your kid."
LJ filed a lawsuit against the state of Florida, and he was eventually placed back on Children's Medical Services and received the care he needed. But some Florida pediatricians worry about other children with special health care needs who, two years later, are still off the program.
The doctors aren't just worried; they're angry.
First, 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.
Second, the screening tool the state 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.
Third, in fall 2015, a state administrative law judge ruled that the Department of Health should stop using the screening tool because it was unlawful. However, 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.
Finally, parents and Florida pediatricians raise questions about the true 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," said Dr. Louis St. Petery, former executive vice president of the Florida chapter of the American Academy of Pediatrics.
Experts outside Florida are also disturbed that the children were switched out of CMS, a program that's served as a model for other states for more than 40 years.
"CMS is well-known and well-respected," said Dr. James Perrin, professor of pediatrics at Harvard Medical School. "It's one of the earlier programs to build in assurances that these kids get the kind of care they need."
"These are the sickest and most vulnerable kids, and (changing their insurance) can mean life or death for them," said Joan Alker, executive director of the Center for Children and Families at Georgetown University. "This is really very troubling."
Dr. Rishi Agrawal, an associate professor of pediatrics at Northwestern University's Feinberg School of Medicine, agreed, adding that Florida should have more carefully considered how the insurance switch would affect the children's health care.
"The process in Florida was particularly abrupt and poorly executed," he said.
Mara Gambineri, a spokeswoman for the Florida Department of Health, said that "at no time (during the insurance switch) did children go without medically necessary services."
State officials, including a spokesman for Gov. Rick Scott's office, declined to comment directly on the pediatricians' and parents' concerns that the children might have been switched to benefit contributors to the Republican Party of Florida.
"The department's number one priority is protecting the health and well-being of all Florida residents, especially children with special health care needs," Gambineri wrote in an email. "The department remains committed to providing quality health care services to Florida's children with special health care needs."
A mother's anguish
In spring 2015, LJ's mother received a phone call from a nurse at the Florida Department of Health.
Stroud had no idea that one word she would say to that nurse -- just one single word -- would cause her son months of pain and suffering.
The nurse asked Stroud a series of questions, including whether LJ was limited in his ability to do things other children could do.
Despite his birth defect, LJ goes to school and plays with friends, so she answered no.
Stroud says that because of that answer, LJ lost his insurance with CMS, the program that has cared for children with special health care needs in Florida for 40 years, and was put on a different Medicaid insurance plan.
LJ was one of 13,074 Florida children kicked off CMS -- that's about one in five children in the program -- as a result of the telephone survey, according to a presentation, testimony and a letter from Florida's top health officials.
Stroud thinks back to her answer to the nurse's question about limitations.
"That question's not fair," Stroud said of the one that got her child kicked off CMS. "What [the Florida Department of Health] did was totally wrong."
Pediatrician: 'A truly duplicitous question'
Experts agree with her.
"I personally find it pretty astonishing that they can take a survey question like that and use it to justify the de-enrolling of these kids," said Dr. Jay Berry, an assistant professor of pediatrics at Harvard Medical School who studies policies for children with special health care needs.
What Florida did was "completely invalid," added Dr. John Neff, professor emeritus of pediatrics at the University of Washington, another expert on children with special health care needs.
The pediatricians explained that many children with serious and chronic medical conditions -- such as cleft lip and palate, HIV, diabetes and cystic fibrosis -- are often able to do things other children can do. However, they still require extensive and highly specialized medical care.
The question the Florida Department of Health nurses asked -- "Is your child limited or prevented in any way in his or her ability to do the things most children of the same age can do?" -- would lead to disqualifying children who truly have special medical needs from a program designed for them, said Stephen Blumberg, associate director for science at the National Center for Health Statistics and one of the world's leading experts on the epidemiology of children with special health care needs.
"You would get false negatives. Your conclusion would be that a child does not have special health care needs when, in fact, the child does," he added.
Gambineri, the Department of Health spokeswoman, said it no longer uses the survey that resulted in 13,074 children being removed from CMS.
"It is unfortunate the negativity surrounding this issue is a continued topic of inquiry, as the department and our stakeholders have put in a significant amount of time and effort to move past this issue for the benefit of the children we serve," she wrote.