Shavondra Smalley loosens mucus in the lungs of her 8-year-old daughter Layla Smalley at their home in Natchez, Miss., Wednesday, Aug. 3, 2022. Credit: Eric Shelton/Mississippi Today

NATCHEZ – Shavondra Smalley wakes up on her living room couch and looks at her 8-year-old daughter Layla stretched out on a hospital bed beside her, BiPAP machine humming. The two start their day as they always do. 

Smalley pulls out a stethoscope and listens to Layla’s labored breathing, checking to see how much mucus has built up in her trachea in the four hours since she last performed this sacred task. She grabs a chest percussion therapy cup, shaped like the bottom of a toilet plunger, and taps her daughter’s chest with it for around five minutes. Having broken up any secretions that could obstruct Layla’s airflow, she then inserts a suction catheter into her tracheostomy tube and removes the debris. 

It’s a Wednesday, but Smalley can’t go to her job of seven years. Layla, who is bedridden, requires the care of a registered nurse when her mother is away. For over a month, the nursing staffing agency she uses has been unable to find enough nurses willing to take a job that only pays up to $35 per hour.

The current reimbursement levels from Medicaid were set in 2009, amidst a recession, and have not changed since, according to Kate Taylor, the owner of Faith and Friends Healthcare Staffing. Smalley uses her agency to find Layla’s nurses.

The hourly wages travel nurses can earn has decreased dramatically since their pandemic-fueled peak, when they could make up to $10,000 per week in New York. But they’re still much higher than the wages private-duty nurses can make serving patients like Layla who are on Medicaid. 

Smalley said she’s called the Mississippi Division of Medicaid multiple times to plead for help, but hasn’t received any response. Officials with the Division did not respond to emails or calls from Mississippi Today about reimbursement levels for private-duty nursing. When a reporter went to the Division building to try and speak with someone, he was told he must make an appointment. 

Taylor has also been reaching out to Medicaid.

“We have asked them (Medicaid) for reimbursement increases, and they say it’s in the works, but in the meantime, we can’t compete,” Taylor said.

Layla requires 20 hours of nursing care a day due to a litany of complex medical conditions. She was born with lissencephaly, which literally means “smooth brain,” a rare brain malformation characterized by the absence of normal folds in the cerebral cortex. She also suffers from scoliosis, chronic respiratory failure and pyruvate dehydrogenase complex deficiency, among other conditions. 

Over the past three weeks alone, Layla has only received 180 of the 420 hours of nursing care she needs, Smalley said. As a result, Smalley has missed work and is becoming increasingly exhausted.

“If they’re (Medicaid) not willing to try to increase the pay, then we’re still going to be going without the care that she needs,” she said. 

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Smalley, a single mother of three children, is currently on unpaid family leave from her job. She gets up to 12 weeks of leave each year and is quickly running out. She’s worried about paying her bills and putting food on the table for her three children. She wants to work and loathes the idea of taking “handouts” from others or getting on welfare.

“I work so hard to take care of my kids and to take care of my responsibilities,” Smalley said. “Anybody that knows me knows that I don’t like to owe anybody.”

She does not want to institutionalize Layla, believing she would receive lower quality care. She takes pride in the care she provides Layla at home, noting she has never had a bed sore.

“I took on the battle to fight for my child since day one, and I’m not stopping,” Smalley said

Though their life has never been “normal,” Smalley is proud of the life she has built for herself and her children. Not having the nursing care Layla needs not only keeps her from working, but also prevents her from doing simple things like going to church or attending her 13-year-old son, Jonathan’s, sports games. 

Jonathan helps out with Layla’s care when she can, though Smalley tries to prevent this as much as possible.

“I try not to put responsibility on my children, because they’re just kids,” Smalley said.

Federal dollars from coronavirus relief packages  subsidized increased nurse wages for hospitals, but not for private nursing staffing agencies like Taylor’s.

Taylor said in addition to Smalley, she has clients in Vicksburg, Collins and Greenwood who can’t get the level of nursing care they need. 

“Any place that’s a little bit more rural, it’s hard to staff,” Taylor said. “Even if I offer a little bit more pay, that doesn’t seem to help.”

Data from the health care management consulting firm Kaufman Hall & Associates showed the dramatic increase in the national average for contract nurse labor costs. Before the coronavirus pandemic, wage rates for contract nurses were almost double those for employed nurses. By March 2022, contract nurses were making $132 per hour while nurses employed by hospitals were making $39. 

Hospitals are competing with each other to hire nurses. Mississippi has lost more than 2,000 nurses over the course of the pandemic due to burnout or higher paying jobs in other states. This strain is being felt all across the country, and the national shortage is likely to get worse over time.

Smalley was told when she was five months pregnant with Layla that her child would have  lissencephaly and was given the option to terminate the pregnancy. She is against abortion, so she declined. 

After giving birth, Smalley received two weeks of tracheostomy and gastrostomy training at the hospital before being sent home with Layla. Through Medicaid’s Disabled Child Living At Home program, she was able to get a rotating group of nurses, each working 10-hour shifts, to take care of Layla. 

That has not been the case for over a month now. 

Medicaid is also experiencing a shortage of certain medical supplies, including tracheostomy tubes. Smalley has been forced to boil Layla’s tube in water to sanitize and reuse it, instead of replacing it each week as she should. 

The staffing problem Smalley is experiencing has been made worse by restrictions placed on who can provide Layla’s care. The nasopharyngeal suctioning Smalley performs on Layla every four hours is considered a “specialized skill” outside of the scope of practice of other health care workers like licensed practical nurses (LPNs) and vocational nurses. This restriction frustrates Smalley, as she’s able to perform it herself even though she’s not a medical professional.

Dr. Phyllis Johnson, executive director of the Mississippi Board of Nursing, said that while she understands Smalley’s frustration, nurses without the educational background of registered nurses do not have the skills needed to perform the kinds of emergency interventions that might be needed in a case as medically complex as Layla’s. 

“Our job is to make sure that the nurses perform safe, efficient and competent care the way they’ve been trained to, because when they don’t do that or step outside the scope of practice, that’s where the patients’ lives become endangered,” Johnson said. 

Smalley is doing the best she can in an exhausting and unsustainable situation. Her kids can’t help but notice the strain caring for Layla puts on their mom. Her 5-year-old daughter  Katelyn just started kindergarten and will often come and sleep next to Shavondra on the couch next to Layla’s hospital bed. 

Smalley has called multiple other staffing agencies across the state, none of which had the staffing available to help her.

“My daughter doesn’t have a voice so I have to be her voice and advocate for her … I just don’t know how long we can go on like this,” Smalley said. 

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Will Stribling covered healthcare and breaking news for Mississippi Today.