Castor and Nelson pressure Florida to reinstate sick children to top-tier Medicaid plan

TAMPA — Two Democratic congressional lawmakers are asking the federal government to intervene and pressure Florida to reinstate specialized health coverage for thousands of sick and disabled children.

U.S. Sen. Bill Nelson and U.S. Rep. Kathy Castor called Thursday for action to help children previously enrolled in Children's Medical Services, a Medicaid plan that covers treatment for conditions such as birth defects, heart disease, diabetes and blindness.

About 13,000 children were switched to less comprehensive Medicaid plans in 2015 after the state changed eligibility rules.

An administrative judge ordered the state to scrap the rules that same year. But as of July, only about 6,000 affected families had been told they could rejoin the program, according to a letter Nelson and Castor sent this week to Tom Price, secretary of the U.S. Department of Health and Human Services.

"I'm asking for answers why poor children, very sick with huge medical needs, were kicked off that program and not notified for two years they could be back on the program," Nelson said.

Florida Department of Health officials said Nelson and Castor were misled by an "inaccurate" CNN report. The department sent letters to families in July, they said. Only about 6,000 letters were needed because many families are already back in the Children's Medical Services program or are no longer eligible for Medicaid, said spokeswoman Mara Gambineri.

The two-year lag in notifying families stemmed from legal concerns that the Department of Health could be accused of promoting one insurance plan over another, she said. When that was cleared up, a draft letter had to be vetted by the Agency for Health Care Administration.

"It was difficult determining if we could do it," Gambineri said. "We didn't want to cause more confusion, but at this point everyone has been notified."

This is not Castor's first run-in with the state over the issue. She previously asked the Centers for Medicare and Medicaid Services to intervene. She said the two-year delay is unacceptable and accused the state of "obliterating" a program that families rely upon.

"They had the direction then to fix this," Castor said. "Nonetheless, the state, the governor, the Department of Health has dragged their feet."

Florida's CMS plan was developed decades ago to help poor families caring for children with chronic health issues navigate the complex medical system. Unlike most other Medicaid plans, it pays for a health case manager who helps parents find pediatric specialists.

Also, the Medicaid plans that children were switched to were not accepted by some specialists, said Dr. Toni Richards-Rowley, a Lithia pediatrician.

The new eligibility rules were introduced in May 2015. At the time, the program covered about 70,000 children. Its enrollment is now about 61,000.

Health Department leaders said in 2015 that the changes were necessary to "ensure that only children with chronic and serious health conditions were part of the (program)" in light of its $826 million budget.

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The families of four children dropped from the program challenged the changes in court, saying the new tool had not gone through the state's formal rulemaking procedure. An administrative judge ruled in their favor and threw the changes out. Another revised screening process was adopted in January 2016.

Dr. Louis St. Petery, a pediatric cardiologist who practices in Tallahassee, was among a group of physicians who said the 2015 rules had hurt some of the state's most vulnerable kids. He is still skeptical that the state has made amends.

"There's some lack of information here coupled with the fact they didn't want to do it in the first place," he said. "That makes me suspicious that all the parents have been notified."

Contact Christopher O'Donnell at codonnell@tampabay.com or (813) 226-3446. Follow @codonnell_Times.