Families with disabled children are in limbo as a Missouri aid program remains stalled
With a nursing shortage exacerbated by the pandemic, some children with disabilities don’t receive the full care they’re eligible for.
The seizures started hours after Gabriella Cotton was born.
In the neonatal intensive care unit at St. Louis Children’s Hospital, “there were tubes everywhere,” said her mom, Stephanie Currie. They protruded from Gabriella’s belly button and mouth, wires were strapped to her head and IV’s snaked out of the newborn’s five-and-a-half-pound body.
“All of my attention was on her at the time, just if she would be okay,” Currie said, who braced herself for the possibility of losing her newborn child. “I didn’t get to hold her until she was a week old.”
After MRI scans, Gabriella was diagnosed with a grade three bilateral brain bleed. It’s what caused her cerebral palsy and epilepsy — just two of the conditions that the now-three-year-old lives with daily.
The brain bleed also led to a build up of fluid known as hydrocephalus, requiring a ventriculoperitoneal shunt to be placed to drain extra fluid. She relies on being fed through a gastrostomy tube and physical movement can be difficult, requiring assistance with standing, sitting and controlling her head.
Gabriella can’t talk. But in the three years Currie has cared for her, as a mother and full-time caregiver, they’ve developed a bond that doesn’t need words to define it.
Families like Currie’s are ones that a new pilot program funded by the state aims to help. Included in this year’s state budget was nearly $3 million in federal stimulus funds to launch a program to train family members to be certified home health aides.
It would be small to start, with just 50 families in the St. Louis area. After being trained, the family members could be hired by a home health agency and be paid to provide care for their medically fragile children.
Team Select Home Care, an Arizona-based company that has lobbied for the program for the past three years, argues it’s a solution that will help tackle a shortage of private duty nurses, ensure children with disabilities receive consistent care and ultimately save both the state and company money.
“A parent never misses a shift, never calls in sick, there’s never a gap in care like there is when we’re only able to use nurses,” Fred Johnson, the company’s president and CEO, said.
But the program has yet to be implemented. The company said top state officials told them the budgeted funds were diverted to respond to COVID-19 needs instead. State agencies have ignored questions on the program for weeks. A state lawmaker and Team Select Home Care are raising questions as to why.
But while the program’s implementation remains in limbo, families like Currie’s are left to get by with the resources they have on hand, even when it’s not enough.
After being born in October 2018, Isabella Bisher kept turning blue.
Isabella would stop breathing. At first, she was sent home with oxygen. But five days later she developed a rhinovirus infection, and from there her oxygen levels and respiratory rates kept dropping. She was eventually diagnosed with congenital central hypoventilation syndrome, a rare neurological disorder that results in impaired breathing.
Like Gabriella, Isabella spent the early days of her life in the neonatal intensive care unit, where she experienced seizures and underwent a tracheostomy surgery to provide an alternate way to breathe. She stayed at St. Louis Children’s Hospital for nine months and wasn’t able to come home until August 2019.
Despite Isabella qualifying for 16 hours of nursing a day, her family could only secure one part-time nurse for four nights a week.
“Nursing was a nightmare,” Amanda Bisher, Isabella’s mom, said.
She’s gone through six or seven day nurses and nearly as many night nurses. One of the nurses who was a great fit and going through nursing school later left for a better paying job with better hours at a hospital when she graduated.
Low wage is a persistent problem within the private duty nursing industry that makes it difficult to attract staff. Advocates are hopeful increased Medicaid reimbursement rates that lawmakers passed this year will help.
As of right now, two different nurses cover six nights, along with help from Bisher’s mom, who is 60 years old and also helps care for Isabella.
“She’s here full time and helps us because Isabella is a full-time job,” Bisher said. “And I have five other children. It is not an easy task.”
‘I wouldn’t give it up for anything’
Both Bisher and Currie described at first being in shock as they learned how to navigate their daughters’ care and the rollercoaster of being in the neonatal intensive care unit.
But they’re now experts. Bisher can now launch into a detailed explanation of steps to tie and change Isabella’s tracheostomy tube — a process that initially terrified her and took a year until she felt comfortable doing it without a nurse’s help.
She’s become unfazed when Isabella has a spell of holding her breath and Bisher needs to step in and manually resuscitate her to jumpstart her breathing.
Currie knows the nonverbal cues to look for to understand Gabriella’s needs. A smile or a little chuckle means yes. Sucking on her hands a lot and cranky could be that her muscles are tight or she’s hungry.
“You kind of have to just learn. You learn smells, you learn what things look like, the differences,” Bisher said. “There’s a lot that goes into it, and you just can’t learn it all at once. It totally comes from experience.”
Currie didn’t return to her job as a sales associate at the Gateway Arch or her side job as a baker after Gabriella was born. Instead, she began caring for her full time. Without a day nurse, Bisher also provides full-time care for Isabella, on top of home-schooling her other kids.
Both are single-income families of eight.
“She’s kind of like my best friend. I spend everyday with her. So I really love it,” Currie said. “It is a lot of work. I think a lot of people would think that it’s very overwhelming. But I love it. I wouldn’t give it up for anything.”
Currie already went through the steps of becoming a certified home health aide, and was hired by Team Select Home Care when it initially started a pilot program before state officials said it needed to secure approval from the legislature in 2019.
It was devastating when the pilot got shut down, Currie said. Being paid to care for Isabella meant her husband didn’t have to work so many hours of overtime as a forklift operator at a freight company and could be with the family more. They felt like they could put savings aside and plan for the future.
“So when it stopped, our whole life kind of stopped,” Currie said. “And we had to think, ‘Okay, well now, what do we do now?’”
Bisher is part of the Caring for Complex Kids Coalition, which is a part of a federal lawsuit alongside nine families that sued the state last year. The lawsuit argued the state violated the Medicaid Act and Americans with Disabilities Act, in part, for failures to arrange for private duty nursing. As a result, the state has since agreed to a plan outlining steps it will take to ensure plaintiffs receive services.
While many of Isabella’s needs require higher certifications of care, Bisher said it would be “a huge help” and amazing to be able for her mother to be paid for the care she helps provide.
Currie has never sought out an in-home nurse, and she ultimately doesn’t want to. She feels she is best for the job. She doesn’t understand why she can hire a stranger to care for her daughter, but isn’t allowed to be paid to do so herself.
“Gabriella is my baby. And when your baby is sick, or when your baby doesn’t feel good, your baby needs you,” Currie said. “And being medically complex, she needs me every day. She needs me all the time, and I want to be able to do that for her.”
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