WESTON (CBSMiami) – The smile on the face of 16-year-old Rebecca Hyman can fool most.
On the day CBS4 met up with her, her father, Seth Hyman, said, "She may look happy and smiling, but that's all seizure activity… she hasn't slept in 36 hours."
Rebecca was born with a rare genetic disorder which causes her to suffer hundreds of seizures a day.
Because of Becca's condition, she has a prescription for 24/7 at-home healthcare nursing.
The problem is the national nursing shortage bleeds over to the private duty nursing services.
This leaves Seth Hyman and his wife to care for Becca's medical needs and juggling work at the same time.
An exhausting predicament.
Hyman said, "The big fear that we have: Is today going to be the day that Rebecca will have a seizure that will take her life?"
Hyman shared video of Becca having a grand mal seizure in the middle of the night.
He was alerted, came to her rescue trying to calm her, and administering oxygen.
It's something a registered home healthcare nurse should take care of.
"Something needs to be done on a legislative level here in the state of Florida," said Hyman.
State Senate Minority Leader Lauren Book agrees and recognizes this is a crisis that should never be happening.
Leader Book said, "At the end of the day if these kids need care, they need to have that care period!"
Less than one week after meeting with Hyman, Leader Book gathered a roundtable of caucus members and reps from state agencies to take on the issue of lack of at-home pediatric nursing.
And now she's moving forward with a resolution.
"So, as we're going up to Tallahassee next week for a special session. We're going to sit down with AHCA secretary and members of her staff and the different care agencies to make sure that we're getting the nurses these families need for these prescriptions."
The at-home nursing shortage began when the government started pumping federal dollars into healthcare systems effectively changing the rates of pay.
Nurses bailed from private companies.
Team Select is healthcare agency that places nurses in situations like the Hyman's. Felipe Ascenso runs the office out of Doral and says the state's pay can't keep up.
Ascenso said, "Some hospitals even offer gigantic bonuses, upwards of $20,000, or traveling positions that make upwards of $100 an hour. That's something we can't compete with. Our billing rates aren't even close to there."
We called more than 15 home healthcare nursing agencies in South Florida.
Ascenso from Team Select was the only one to call back.
He and his team are battling the nursing salary discrepancies.
The State Agency for Health Care Administration – or AHCA – is in charge of Florida's $25.2 billion Medicaid program and its reimbursement rates.
The maximum rate of reimbursement for private nursing is $29.10 an hour.
And that "fee schedule" was updated this year, 2022.
Ascenso says Team Select's nursing shortage is roughly 20% deficit.
"We have up to five people who are constantly calling, calling, we're always calling new grads. We're calling nurses with licenses for many years", Ascenso said. "We're always focused on making sure we're satisfying the needs of our clients."
Another South Florida family in the same precarious position is Maria Appenzauser and her daughter Chrystal.
Maria Appenzauser is a single mom stretched to the limits.
Chrystal lives in a wheelchair and requires a ventilator 24/7.
Appenzauser says Chrystal was denied schooling in the Broward County Public School system.
Before the pandemic Chrystal was enrolled at Cypress Bay High.
But the nursing shortage has stolen Chrystal's semblance of normalcy.
She hasn't been allowed at school for over a year.
Appenzauser said, "The school is telling us they don't have or can't find a nurse for her to go to school. She's on a ventilator 24/7, she needs to be suctioned every 20 minutes, her mouth."
Despite Chrystal prescription for round the clock nursing Broward schools sent a letter saying it was unable to secure a qualified nurse to provide services.
"Since school start, she keeps telling me, 'Mom I want to go to school. What happened with the nurse? I want to be with my friends.' She loves to go to school", said Appenzauser.
Leader Book says the state's reimbursement rates haven't been looked at in years.
She says the money is there and perhaps reevaluating reimbursement rates is a start so these families can return to an albeit challenging, but manageable life.
Book says she'll raise the issue of the pediatric nursing shortage again, during the special session and it'll definitely be a topic when the legislature reconvenes next year.
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