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Children with complex medical needs like 6-year-old Sadie Smith, who has mitochondrial disease, a rare genetic disease, are struggling due to changes in the rules of enrollment for Medicaid and Florida’s delay in implementing a 2023 law to expand Florida KidCare.
Sadie needs four daily breathing treatments that take one hour each, a special wheelchair, and continuous care. Due to this rare genetic disease, Sadie is unable to walk, sit, or talk without a medical device. Sadie can’t ask for help, which requires always having an adult available to make sure she has what she needs.
While people may traditionally think of Medicaid as being for those living with limited income, families whose children have rare diseases or complex medical needs also depend on Medicaid to cover the many expenses that are absolutely essential to support their children’s medical needs. Private insurance, even when available, does not provide adequate coverage for children with complex medical needs.
Sadie is one of the many children whose life requires close monitoring of body temperature and seizure activity, multiple expensive medications, and medical equipment that are not covered by the private insurance she has through her dad’s job. Sadie’s parents were grateful for Medicaid which covered therapies, nursing, and services not covered under her dad’s plan – including a compounded medication that has enzymes and other supplements she needs because of her specific gene mutation. All of these things help slow the progression of her disease.
On May 31, 2024, Sadie lost her Medicaid benefits because her family was over the income limit once Florida redetermined her eligibility as part of the post-COVID Medicaid redetermination process. Her parents quickly applied for Florida KidCare and were shocked to learn that because they were slightly over the income for a subsidy and were on the full-pay plan, Sadie could not enroll in CMS (Children’s Medical Services), the KidCare plan for children with complex medical needs. That meant that her new Florida Kid Care plan would not cover all the services not included by her dad’s plan, which Medicaid had previously covered.
Sadie’s family has explored all existing options, including numerous calls to CMS, DCF, and even the Governor’s Office.
“The most frustrating part is the lack of clear information. When you call one agency they tell you things that give you hope, until you call the other agency to learn there is nothing they can do for you,” Sadie’s grandmother said.
Florida Health Justice Project engages in comprehensive advocacy to expand health care access and promote health equity for vulnerable Floridians.
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