Kristina and Nick Bruno were overjoyed when a 2023 Florida bill passed, meant to help support the treatment for their medically fragile child, only to be unable to access the funding two years later.
The law (SB 391), which passed in 2023, allows parents and caregivers of children with chronic and complex medical needs to be paid a salary to care for that child. However, it is almost impossible for a parent to be enrolled without losing their Medicaid eligibility, linked to the new income.
For the Bruno family, losing Medicaid isn’t an option. Their son, Braden Bruno, has a rare genetic disease requiring round-the-clock care. Braden visits the ER up to six times a year, has 12 doctors and multiple therapies, requires medical supplies, and needs specialized in-home equipment.
Kristina said those expenses take an intense financial toll on the family.
“Every single child should have their basic needs met, right? But for these children, their basic needs are these medical needs. To be on Medicaid is huge. But with that comes the stringent, stringent, stringent income limits,” Kristina said.
The law includes a program launched for parents to complete training with a home health care agency and a salary from that agency to take care of their child as a nursing assistant.
Angels of Care is an home health care agency that worked to help get the law passed. While parents have been trained, they haven’t been paid because of how it would affect their Medicaid eligibility.
Jennifer Munson, vice president of Angels of Care's East Region, said the agency is doing everything it can to assist families because it knows how helpful the program can be.
“Some of these families are not going to be eligible for the program based on the type of insurance that they carry,” Munson said. “We are still collaborating with them and trying to help them potentially get on a plan that does qualify them to participate in this program.”
Though Angels of Care has only put three families through the program so far, the demand is extremely high in facilities all over Florida, according to Munson.
“As of now, we have over 100 families that we seek to get through this program,” Munson said.
Changes are being developed to fix those eligibility concerns. Republican state Rep. Chase Tramont, who sponsored the bill in 2023, is working with the House Health Care Facilities Systems Subcommittee to fix this issue.
“Never did I anticipate it would be two years for it to be implemented,” Tramont said.
He’s drafting a proposal that would change the eligibility requirements, so parents won’t lose Medicaid benefits.
Advocates asked the committee to classify the children as a “family of one,” meaning they would be treated as an individual making no income and not affect their caregiver’s Medicaid benefits. That seems to be where policymakers are leaning.
“The child will be a family of one that will likely be what we put in there.” Tramont said.
Kristina expressed that to many parents and caregivers the law is more than just a benefit, it’s a necessity. She believes her family is best equipped to help her son.
“We're the ones that have been keeping him alive this whole time,” Kristina said., “It's hard to just say, yeah, here you go, take care of my son ... even if someone were to come in, the amount of training and getting to know him, it wouldn't be an overnight thing.”
The subcommittee plans on exploring potential new solutions in the coming weeks.
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