After three months and nearly losing her job, Shavondra Smalley of Natchez is hopeful her 8-year-old daughter can now get the medical care she needs so the mother can get back to work.

Smalley, who struggled to find nurses to care for her bed-bound daughter, is hopeful the situation will improve thanks to a proposed increase in pay from Medicaid for private duty nurses and rewritten doctor’s orders that specifically allow for the use of licensed practical nurses when registered nurses aren’t available.

The nursing shortage, exacerbated by high-paying travel and contract nursing jobs, meant very few nurses were interested in working for the meager hourly reimbursement rate approved by Medicaid for private duty nurses, who work one-on-one with patients in their homes. And confusion over some of the care Smalley’s daughter Layla was receiving prompted a months-long period where the licensed practical nurses (LPNs) who had been taking care of Layla for years were no longer allowed by Medicaid.

This left Smalley, a single mother, with no choice but to take an unpaid leave from her job to take care of Layla, who is bed bound. Her daughter requires 20 hours of nursing care a day because of complex medical conditions including a rare brain malformation called lissencephaly. 

On average, each week for the last three months, they had a nurse for about 40 of the 140 hours Layla needed, Smalley estimated.

“The main issue was my child needed care and me being a single mother, I needed to work,” said Smalley. 

READ MORE: Nursing shortage, low reimbursement rates mean this 8-year-old can’t find care

Layla also suffers from scoliosis, chronic respiratory failure and pyruvate dehydrogenase complex deficiency, among other conditions. She is on a ventilator around the clock. 

She is enrolled in Medicaid’s Disabled Child Living at Home program, which allows certain disabled children with long-term disabilities or complex medical needs who live at home with their families to qualify for Medicaid. 

The state Division of Medicaid on Sept. 30 submitted an emergency amendment to the federal Centers for Medicare and Medicaid Services for a 15% increase in reimbursement rates for private duty nurses for as long as the federal Public Health Emergency lasts. The proposal is still pending before the federal government, but if approved, the increase will retroactively take effect as of Oct. 1. The amendment says the rate increase would be “to ensure that sufficient health care items and services are available to meet the needs of individuals enrolled in the respective programs… .” 

The Public Health Emergency could end as soon as mid-January, so the rate increase would expire at that point.

“We’re still evaluating private duty nursing rates post-Public Health Emergency, but doing the emergency amendment to the state plan is allowing us to be a little faster than what normally submitting things for federal approval is,” said Matt Westerfield, communications officer at the Division of Medicaid. “We’re attempting to provide as quick of a relief as we possibly can.” 

Currently private duty nurses are paid ranging from $17/hour for certified nursing assistants to $34/hour for registered nurses, or RNs. RNs who take care of patients on ventilators in the home – like Layla – are paid $51/hour. A 15% increase would mean the rates would rise to nearly $20/hour and $39/hour, and up to $58.65/hour for registered nurses taking care of patients on ventilators. 

Layla’s physician in September also rewrote a plan of care that calls for RNs but allows for LPNs when RNs are unavailable. The revised plan of care was originally denied by Medicaid, Smalley said, but she did what she’s been doing the past three months and picked up the phone, prepared to file an appeal. 

“I’d been speaking with a lawyer and she told me if I’m not happy with the services, I can file for an appeal,” Smalley said.

When she got the news the plan of care had been denied, she called Medicaid to initiate the process and left a message with the person who handles appeals.

“About 20 to 30 minutes later, I got a call from somebody completely different with Medicaid … who wanted to hear my side of the story. I explained to her what was going on and told her the doctor approved for there to be RNs and LPNs and (there has been clarification) that we’re not doing deep suctioning, and you all are still denying these services.”

There had also been confusion over whether nurses were performing a task called “deep stem suctioning” on Layla. Smalley and Layla’s caregivers also had to get clarity from the Board of Nursing that the tracheostomy care Layla receives is not deep right main stem suctioning that extends beyond the carina, a section at the bottom of the trachea, but is instead routine tracheostomy care. LPNs are not allowed to perform deep suctioning.

The next day, the employee called Smalley back and told her the care had been approved by Medicaid – days before Smalley’s employer told her if she wasn’t able to return to work the following week at the end of her leave, the job would have to be posted.

Smalley returned to work Monday – the same day her 12-week leave ended – and has the next several weeks of care lined up, she said. 

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