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Special-Needs Kids in Quandary

Leon County Judge John Cooper on June 30, 2022, in a screen grab from The Florida Channel. by slava
The Florida Channel
Leon County Judge John Cooper on June 30, 2022, in a screen grab from The Florida Channel.

Florida pediatricians say they are worried about what will happen to young special-needs patients as the state privatizes the Children's Medical Services program over the next three months.

The changes are part of a larger transition for Medicaid patients from a traditional system -- in which doctors and hospitals bill the state whenever a patient receives a service --to prepaid health plans. Thanks to a 2011 law revamping Medicaid, Children’s Medical Services must make the transition to managed care by Aug. 1.

Some pediatricians say the transition has been poorly planned and late in getting the word out and contracts signed.

"This means the 70,000 CMS children will be thrust into the unknown," said Sam Bell, a retired lobbyist who helped start Children’s Medical Services while he was a lawmaker from Volusia County in the 1970s. "These kids are going to be out there without medical homes and unable to get services. It’s going to be a crisis."

Children's Medical Services is designed to care for special-needs children, including those with autism, developmental and cognitive limitations, visual and hearing impairments, behavioral disorders and learning disabilities.

Pediatricians thought they had a stopgap in Senate Bill 2512, a Medicaid budget conforming bill that extended CMS as a fee-for-service option throughout the changeover. Fee-for-service is a traditional system in which doctors and other health providers are paid for individual services they provide, a different payment system than managed care.

But Sen. Denise Grimsley, chairwoman of the Senate Health and Human Services Appropriations Subcommittee, said Wednesday that the Senate would accept a House Medicaid bill (HB 5201), which does not contain a fee-for-service option for Children’s Medical Services.

"I don’t think it’s needed," said Grimsley, R-Sebring. "The Department of Health and (Agency for Health Care Administration) are both telling us CMS is ready.”

Department of Health communications director Nathan Dunn said his agency objected to the fee-for-service option because it could delay the rollout of Medicaid managed care.

"Any changes to the current transition plan would require approval from the (federal) Centers for Medicare & Medicaid Services, which could take several months," Dunn said in an email.

Justin Senior, deputy secretary for Medicaid at the Agency for Health Care Administration, said the transition is going well, and that kids enrolled in Children’s Medical Services can stay there until Aug. 1 if their parents so choose.

"Children who are medically complex, throughout the state, will have the option of choosing one of the regular health plans that are available in their area or choosing the CMS plan to receive their health services," Senior said.

But that’s not what the pediatricians say. They say families aren’t being informed that they could stay in CMS until Aug. 1.

Louis St. Petery, a pediatric cardiologist and executive vice president of the Florida Pediatric Society, said he’s been getting calls from worried parents. He pointed to families that had already chosen a Medicaid HMO, thinking they were choosing Children’s Medical Services, and were taken off the CMS rolls as a result.

"The nurses were telling me they can’t even make appointments for my patients down the road, and they’ve got to right this wrong," St. Petery said. "They’ve got to get them back in the CMS network. This is crazy."

According to the Department of Health, where CMS is housed, the "welcome letters" notifying parents that their children’s coverage is ending in its current form will go out May 26. Reminder letters will go out on June 23, while July 17 is the last day to choose a plan before the new system "goes live" on Aug.1.

"The compressed time frame is worrisome," said Anne Swerlick, deputy director at Florida Legal Services, who warned that continuity of care is crucial for children in such delicate conditions.

Swerlick’s colleague, attorney Amy Guinan, said the confusion over staying enrolled in CMS until Aug. 1 was partly due to the fact that the program remains an option for some other children, including those who have been removed from their homes due to abuse and neglect.

Both AHCA and the Department of Health have tried to clarify that children in foster care can stay in Children’s Medical Services, but with little leeway before the deadline.

"Please be advised that some of the Choice Counselors are telling parents and CMS case workers that CMS is not an option," emailed Katrina Ward, an operations review specialist at DOH, to colleagues on April 14. "THIS IS NOT TRUE. If a parent or (community based care) case worker chooses CMS and is told this is misinformation, they may speak to a supervisor."

But the deadline for choosing CMS for a child in foster care was April 17. That was three days after the email was sent.

Sen. Aaron Bean, a Fernandina Beach Republican and chairman of the Senate Health Policy Committee, said legislative leaders "have checked in with CMS, who say they’re on schedule, that they’re doing all that they need to do … at this time of the game to make it happen for a smooth transition."

Bell and St. Petery say they’ve tried repeatedly to address their concerns directly to DOH and AHCA, but that communications between the state and the pediatricians are further complicated by a lawsuit that has been pending for years.

In 2005, the Florida Pediatric Society and the Florida Chapter of the American Academy of Pediatrics filed a federal class-action lawsuit against the three state agencies that oversee children in Medicaid: AHCA, DOH and the Department of Children and Families. The plaintiffs argued that kids weren’t getting the services they were entitled to because the state’s reimbursement rates were so low that medical professionals had to pay in order to provide them.

The ruling in that case is still pending. Bean noted the doctors’ concerns and said lawmakers would be watching the rollout carefully.

"We’re going to be monitoring even more closely if there’s continued feedback that they’re not progressing or notices haven’t gone out," he said.