Struggles of Caregivers: The Impact of Medicaid Cuts on Families with Medically Fragile Children in Florida
Title: Families in Crisis: Florida’s Medically Fragile Children Face Care Cuts Amid Contract Changes
CLEARWATER, FL — Eight years ago, Melissa Decampos faced an unimaginable tragedy when her daughter took her own life. Now, she finds herself in a relentless battle to care for her granddaughter, Toriana Hayes, who has Wolf-Hirschhorn syndrome—a rare genetic disorder that leaves her developmentally delayed and at risk of life-threatening seizures.
At 19, Toriana appears much younger and requires constant care, including medication every three hours, feeding through a stomach tube, and a respiratory device for sleep apnea. For her entire life, Toriana has relied on 24-hour nursing care funded by Medicaid. However, in March, Sunshine Health, the company managing Florida’s program for medically fragile children, deemed this level of care “not medically necessary,” slashing Toriana’s nursing hours by half.
“I just can’t take it any longer,” Decampos, now 63, said, expressing her fears of exhaustion potentially triggering her own health issues, including a history of multiple myeloma.
Decampos is not alone. As Sunshine Health bids for a new state contract, nearly 100 families across Florida have reported similar reductions in at-home nursing services. Some children have been informed they no longer qualify for nursing care, contradicting medical advice from pediatricians and specialists.
Sunshine Health has not disclosed the number of denials issued this year but insists that its assessment process remains unchanged. “When a member’s documented clinical needs do not require one-to-one skilled nursing, our care managers offer alternative wrap-around services,” the company stated.
However, nursing agencies are alarmed by the sudden wave of denials. One agency reported that 70 of its patients received denial letters this year, while another noted 20 denials in just one month. Families are left scrambling to appeal decisions that could jeopardize their children’s health.
Kayla Webb, a Lakeland mother, experienced this firsthand when her son Dylan, who suffers from multiple medical issues including a heart defect and cyclical vomiting syndrome, had his nursing hours cut from 24/7 care to just eight hours a day. Despite appeals backed by medical professionals, Sunshine Health denied the request for reinstatement, claiming that Dylan’s needs could be met by home health aides—who are not licensed to administer medication or perform emergency procedures.
“This is putting these kids’ lives at risk,” Webb said, highlighting the emotional and physical toll on families forced to navigate a complex and often unyielding healthcare system.
The situation is compounded by a federal injunction against Florida for violating the Americans with Disabilities Act, stemming from a 2013 lawsuit that found many disabled children were unnecessarily institutionalized. The state is under pressure to meet benchmarks for providing skilled in-home nursing care, yet the recent denials raise concerns about compliance.
As families like Decampos and Webb fight for the care their children desperately need, the emotional and physical strain is palpable. “People with medically fragile children do not have the time to fight cases,” said Matthew Dietz, a law professor and advocate for disability rights. “They have a hard enough time caring for their own kids.”
In the face of these challenges, families are left to wonder: will their children receive the care they need, or will they be forced into a system that prioritizes cost over compassion? As the state prepares for a new contract with Sunshine Health, the stakes have never been higher for Florida’s most vulnerable children and their families.