Florida Parents Await Approved Assistance for Medically Fragile Children

Parents and relatives who are responsible for the care of medically fragile children aged 21 and younger will experience a delay in accessing medical training and financial compensation, as mandated by a new state law recently approved in the last legislative session. The legislation, known as HB 391, was sponsored by Florida Representative Chase Tramont (R) District 30 and signed into law by Governor Ron DeSantis in July. However, the final details and implementation guidelines will not be finalized until May.

Tramont emphasized the importance of not only passing the bill but also swiftly implementing it to ensure its efficacy. He stated, “We will create a sense of urgency on the folks that will have to implement this.” Tramont further expressed his clear communication to the Florida Agency for Health Care Administration, insisting that parents should receive no less than $18 per hour.

Under the provisions of the bill, parents will receive a maximum compensation of $25 per hour, coupled with an estimated $472,000 in funding allocated for training offered by certified nurses through home health agencies. Once certified, parents will be employed as medical aides for five days a week.

Tramont provided insight into the current developmental stage of the legislation, highlighting ongoing efforts to establish the rules and methods of implementation. The state will directly pay the home health agency, which will subsequently issue paychecks to the mothers, fathers, or caretakers acting as the home health aides.

The bill includes a requirement for a training program that encompasses a minimum of 85 hours focused on specific topics. Additionally, it permits a home health aide (HHA) to hire a family caregiver as an aide if they have completed the training program and fulfilled other criteria, such as undergoing a background screening. The legislation also mandates HIV/AIDS and cardiopulmonary resuscitation training for aides and necessitates that the employing HHA ensure the completion of 12 hours of in-service training for the aides every 12 months.

Tramont stressed the financial advantage of caring for medically fragile children at home, stating that the cost of housing them in medical facilities significantly surpasses the expenses associated with home care. This sentiment was echoed by Delora Bury, whose 3-year-old daughter Emersyn was diagnosed with Lysosomal Storage Disorder, a rare condition that hampers intellectual and physical development. Bury, who now devotes her time entirely to her daughter’s care, had to relinquish her job and income. The resulting personal and economic strain has taken a toll on her husband and three other children.

Bury explained, “It’s a lot, physically and mentally. [The legislation] will provide financial support that we are missing and how we are going to make ends meet financially when we have but one income coming into the house.” Having worked as a dental assistant for 15 years, she made the difficult decision to leave her position in order to care for her daughter. Bury also expressed her limited access to nursing assistance, emphasizing that once the nurses leave, she is solely responsible for her daughter’s care.

Tramont estimated that approximately 1,200 families will benefit from this legislation, acknowledging the challenging decision parents face when deciding between their careers and caring for their children. For any consumer or medical concerns, individuals can reach out via email to [email protected] or text “make ends meet” along with their issue to 407-676-7428.

In conclusion, the approval of HB 391 in Florida marks a significant step towards providing support and compensation to parents and relatives caring for medically fragile children. While the law was signed in July, the implementation details are still being finalized and are expected to be completed by May. The bill, sponsored by Representative Chase Tramont, emphasizes the importance of promptly enacting the legislation to ensure its effectiveness. Under the law, parents will receive medical training and financial compensation of up to $25 per hour, accompanied by funding for certified nurse training. The bill requires parents to undergo a comprehensive training program and enables them to be employed as medical aides five days a week. The legislation also emphasizes the cost-effectiveness of caring for medically fragile children at home compared to institutional care. The estimated 1,200 families expected to benefit from this law will experience significant relief from the financial burden associated with caring for their children.

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