PHOENIX — Laura Gjacs' spends a lot of time with her 9-year-old daughter Tori. Laura is a social worker by trade but has been a full-time caregiver for her daughter after she was diagnosed with a rare neuromuscular disorder months after she was born.
"She has a diagnosis of Warburg Micro syndrome and the one that causes a lot of problems is Neuromyelitis optica," said Laura.
Neuromyelitis optica affects Tori's central nervous system, and causes paralysis in her legs and arms, along with painful spasms.
"It's a full-time job"
"She will come off her BiPap machine, and we will do her ADL’s for the day and get her dressed," said Laura. "She does her inhalers. She has multiple medications throughout the day that we administer. She is g-tube fed, so she feeds on that 19 hours a day.”
Beyond her diagnosis, Tori is your typical kid.
"She likes music and dancing, arts and crafts," said Laura. "She loves going for walks. We go for walks about an hour and a half each day, even in the summer when it’s hot outside, then we literally go for a walk at 10 o’clock when it’s cool. She loves to be outside.”
COVID-19 has added to the challenges of providing around-the-clock care for Tori due to nursing shortages and Laura's inability to get a job outside of caring for her.
It's challenging for most families with medically fragile children like Tori to stop working to provide necessary medical care. But after Arizona House Bill 2521 was passed last year, the state has become the third to approve the Family Licensed Health Aide (FLHA) Program.
“A lot of times this may be the first time a family member can contribute to some type of income,” said Colby Kostur, Regional Vice President of Long-Term Care at Team Select Home Care.
How the new FLHA Program works
The program allows caregivers the ability to provide skilled care services for loved ones while operating under the supervision and guidance of a registered nurse case manager.
Team Select Home Care employs parents and family members for the Colorado and New Hampshire programs and was instrumental in getting Arizona legislation passed.
The program requires family members to pass the state and board of nursing schooling and typically takes less than a week.
Laura was the first parent to complete the program in Arizona.
“It’s definitely helping families and the financial constraints they face,” said Laura.
According to Team Select Home Care, the FLHA Program provides many benefits including:
- Improved access to quality care for the child.
- Opportunities for the family member to earn a living by providing skilled care for their loved one.
- Helps alleviate the nursing shortage by adding an influx of LHAs to the workforce that will free up RNs and LPNs to care for higher acuity patients.
- Provides significant cost savings for Arizona Medicaid and taxpayers in two main ways:
- 30-50% savings for every hour of nursing care replaced with LHA care.
- Significant reductions in unplanned hospitalizations of medically fragile children can cost an average of $4,264 per day.
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