Florida to Opt in to Law that will Improve Care for Medically Fragile Kids

September 22, 2023
A group of eight people smiling. They are in a bright colored office and woman in middle is holding a toddler.
St. Joseph's Children's Hospital President Sarah Naumowich, Gabe and Emily Calcines, BayCare System Communications Strategist Amy Gall, Luke Calcines, U.S. Rep. Kathy Castor, BayCare Government Relations Manager John Learn and BayCare Government Relations Director Jason Rodriguez during a meeting in D.C. this summer.


An idea that took root in St. Joseph’s Children’s Hospital will soon benefit children with chronic or complex medical conditions across Florida.
Gov. Ron DeSantis signed Senate Bill 2500 into law on June 15, 2023, taking the first step for Florida to opt in to the Advancing Care for Exceptional Kids Act (ACE Kids) Act.
After years of advocacy and deliberation, ACE Kids was signed into federal law on April 18, 2019. The bipartisan legislation improves how care is delivered to America’s medically fragile children and was inspired by the Daniel J. Plasencia, MD Children’s Chronic Complex Clinic at St. Joseph’s Children’s Hospital, which leads the nation in coordinating care for medically complex children.

When implemented by states opting in to the program, ACE Kids will enable better care coordination across multiple providers, ease access to necessary care across state lines, decrease Medicaid spending, and reduce the need for children with chronic or complex conditions to be hospitalized. 

U.S. Representatives Gus Bilirakis and Kathy Castor championed the bill and leaders from BayCare and St. Joseph’s Children’s Hospital have spent more than a decade advocating for the passing of this important legislation. Patients and families from St. Joseph’s Children’s Hospital’s Chronic Complex Clinic joined them in their efforts, sharing their health care stories during meetings with members of Congress.

A woman on left wearing black sweater is smiling and looking at a boy in black shirt who is looking at a man in business suit on the right.
Krystal Lockhart discusses how the ACE Kids Act will help her son, Lakota, with Rep. Gus Bilirakis in 2017.
“The implementation of ACE Kids in Florida will improve outcomes for the thousands of medically fragile children in our state, including our own Chronic Complex Clinic patients,” said St. Joseph’s Children’s Hospital President Sarah Naumowich. 

Patients like Luke, who was born with a blood vessel abnormality inside his brain and has undergone five surgeries to correct blood flow through the malformation; Lakota, who was born with an extremely rare condition that causes his breathing to stop every time he falls asleep; and Lucy, who receives nourishment through a feeding tube, breaths through a ventilator and requires nursing care 24 hours a day. 

A man and woman and child in a wheelchair are smiling and posing in front of a building in the nation's capitol.
Russell and Lisa Ferlita with their daughter, Lucy, after a day of meeting with members of Congress in 2018.
“We’re grateful to U.S. Representatives Gus Bilirakis and Kathy Castor for championing ACE Kids and to Gov. DeSantis and the Florida Legislature for including language in the upcoming budget that will likely lead to Florida being the first state to sign onto ACE Kids,” BayCare Government Relations Director Jason Rodriguez said. “We appreciate their thoughtful leadership, and for ensuring that Florida continues to lead the nation in caring for its most medically complex children.”

St. Joseph’s Children’s Hospital’s Chronic Complex Clinic has been recognized nationally for its innovative work with medically complex children. Serving as a medical home, the specialized clinic provides consistent, accessible and coordinated primary care, resulting in healthier, happier and higher qualities of life for its patients.

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