Parents and relatives caring for medically fragile children 21 years of age and younger will have to wait to apply for medical training and financial compensation provided under a new state law approved in the last legislative session.
HB 391, sponsored by Florida Rep. Chase Tramont (R) District 30, was signed into law by Gov. Ron DeSantis in July, but the final details will not be hammered out until May.
“It’s one thing to pass a bill, but until you implement it, it means nothing,” Tramont said. “We will create a sense of urgency on the folks that will have to implement this.”
Tramont told News 6 that he has “made very clear” to the Florida Agency for Health Care Administration that no lower than $18 per hour should go to the parent.
[EXCLUSIVE: Become a News 6 Insider (it’s FREE) | PINIT! Share your photos]
The bill provides a maximum of $25 per hour along with an estimated $472,000 in funding to pay for training provided by certified nurses with home health agencies.
Once the parents are certified, they will be paid as medical aides five days each week.
ACHA has issued a timeline to put the law into action, which you can view below.
“They’re still developing what the rules are going to be and how they’re going to implement it,” Tramont told News 6 from Tallahassee. “The state will be paying the home health agency and then they will be providing the paycheck for the home health aide which will be the mother, or the father or caretaker in each particular case.”
The bill requires a training program to “consist of at least 85 hours of training in specified topics and allows a home health aide (HHA) to employ a family caregiver as an aide if he or she has completed the training program and met other specified criteria, including background screening.”
The bill also requires an aide to complete HIV/AIDS and cardiopulmonary resuscitation training, and requires the employing HHA to ensure that the aide has 12 hours of in-service training every 12 months.
Tramont stressed that the cost of housing a child in a medical facility “far exceeds” the cost of care for them in their family home.
Delora Bury’s 3-year-old daughter Emersyn was diagnosed with Lysosomal Storage Disorder, a rare disease that impacts the body’s metabolism slowing down intellectual and physical development.
Bury has assumed full-time care of her daughter, giving up her job and income. She says the personal and economic pressure has been difficult on her husband and three other children.
“It’s a lot, physically and mentally,” Bury said. “It 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.”
Bury worked as a dental assistant for 15 years and walked away from her position to care for her daughter.
She told News 6 she is getting limited help from nurses, and once they leave “at 4 p.m. or 7 p.m., it’s all on me.”
Tramont said an estimated 1,200 families will benefit from this legislation.
“It’s a tough spot to be in when you’re a parent to decide: do I keep my career or do I take care of my child?”
If you have a consumer or medical issue email makeendsmeet@wkmg.com or text the words “make ends meet” along with your issue to 407-676-7428.
HB 391 Timeline by Christie Zizo on Scribd
Get today’s headlines in minutes with Your Florida Daily: