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Sick Kids Dropped From State Health Program Could Be Re-Enrolled

The Florida Department of Health is moving closer to re-opening the healthcare program for some of the state’s sickest kids. And that could eventually mean some of the 9,000 children dropped from the program could re-enroll.

During the Summer the Florida Department of Health began quietly dropping families from the Children’s Medical Services Program—steering them instead into Medicaid Managed Care plans. Among those removed from CMS was Charmin Pafford’s six-year-old daughter who has Type 1 Diabetes and wears a pump all the time. The condition is so severe, her daughter could die in a day without the device and insulin it provides.

“Her pump, its required to be changed every three days. Because if not, it causes high blood sugars because it becomes contaminated," Pafford said. "So, we’d gotten to the point that we had to make it go as long as we could.”

Pafford says in July she received a call from a Department of Health official who asked five questions from a survey—including the one question critics have now identified as a trick:

"And it was literally five simple questions. I can’t remember the other three to save my life.  But the one was, ‘does she receive outside therapy?’ Is she able to be active as any normal kid?’ And it was three other questions. And that is what I was given my answer by. And it was over the phone.”

Answering “yes” to the question "Is she able to be active as any normal kid?" resulted in 9,000 of some of the state’s sickest kids removed from CMS. Families sued the state, and now the Department of Health is working to revise how it screens families. Under the proposed rule, a doctor’s input can now lead to immediate enrollment if a child has a condition that’s on the department’s preapproved list.

“The attestation form has a series of diagnostic codes with chronic and serious conditions that can be initialed by a physician to automatically establish clinical eligibility," Jennifer Tschetter, the Department’s Chief Operating Officer, recently explained during a rulemaking meeting.

But the parent survey, which has caused so many problems, remains. And the healthcare advocacy group Florida Chain, is questioning its continued use.

Limitations are not the same thing as health care needs. Furthermore, most children with special healthcare needs aren’t going to have such limitations if they get proper treatment, as delivered through a specialty healthcare network," said Florida Chain policy director, Laura Brennaman.

Still, Tallahassee-based pediatric cardiologist Dr. Louis St. Petery, a critic of CMS’s changes, say the proposed rules are a step forward:

“I’m delighted to move forward with readmitting kids to CMS and I’m also delighted that you specifically mentioned a re-opening of this rule in three months.”

The re-opening of the rule would be for the Department to consider adding more conditions the list of those that warrant coverage in the program.

Charmin Pafford says she misses the support CMS provided her family, the immediate responses, and what she says is a greater attention to care than what she’s received in her new Staywell plan. That plan took effect September first. It was not until shortly after Thanksgiving her daughter began receiving the medications and testing strips she relies on daily. Pafford is frustrated the current list of conditions floated by the Department of Health doesn’t include Type 1 diabetes. But she says if the family had the opportunity, they would return to the Children’s Medical Services Program. And they could soon get it.  According to the News Service of Florida, the Department of Health says the families of kids who were dropped under the old process can apply at their local Children's Medical Services offices to be reinstated.

Copyright 2020 WFSU. To see more, visit WFSU.

Lynn Hatter is a Florida A&M University graduate with a bachelor’s degree in journalism. Lynn has served as reporter/producer for WFSU since 2007 with education and health care issues as her key coverage areas. She is an award-winning member of the Capital Press Corps and has participated in the NPR Kaiser Health News Reporting Partnership and NPR Education Initiative. When she’s not working, Lynn spends her time watching sci-fi and action movies, writing her own books, going on long walks through the woods, traveling and exploring antique stores. Follow Lynn Hatter on Twitter: @HatterLynn.