Sandra's Story

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Sandra and Lavonda Smith

Having to feed, clean, nurture, and ensure that your kids’ needs are met can be challenging. However, being the mother of a special needs child alone is a mountainous responsibility only some people can do well. Thankfully, for Sandra Smith, she flourishes in being a mother.

Sandra, a resident of Central Mississippi, has three children. The oldest is 13 and very active in sports. The youngest recently started kindergarten. Her middle child Lavonda is special needs and requires twenty-four-hour care.

Lavonda was born prematurely, causing several complex issues. At birth, doctors noticed her enlarged ventricles. Lavonda was diagnosed with a rare metabolic disorder months later. So rare doctors said she had less than a 1% chance of getting it. Her medical professionals did not expect her to live longer than a year because of her complications at birth. Lavonda defied all odds and is nine years old.

Although she exceeded doctors’ expectations and continues to do so, she must be cared for around the clock. Lavonda is on a BiPap ventilator 24/7 to help her breathe and tracheal and gastronomy tubes. Medicaid covered and provided private-duty nursing for Lavonda’s care until 2019. Specifically, licensed practical nurses (LPN) would sit with Lavonda and provide the care she needed around the clock. Over the years, Lavonda and Sandra grew comfortable with these nurses as they had been in their homes providing the necessary care that Lavonda needed.

However, in December 2019, Medicaid changed its guidelines stating that any ventilator patient must be cared for by registered nurses (RN). Changing the guidelines was a massive disruption to Lavonda’s care because Medicaid no longer covered the LPNs the family was accustomed to working with for years. The change forced Lavonda to go a month without care.

It’s no secret that Mississippi has a shortage of RNs, and Lavonda feels the impact directly. The care company was scrambling to find RNs who could provide private-duty care in the area. They found two full-time RNs who could provide care to Lavonda Monday through Friday, but the high turnover for RNs left Lavonda with no coverage during nights and the weekends for more than six months.

Sandra switched Lavonda’s care provider in July 2020, hoping they would have a more consistent staff. We’ll call the company, Blue United. Unfortunately, they faced the same difficulty scheduling RNs, but they did staff the Smith’s with LPNs to ensure Lavonda would be with care around the clock. They continued using Blue United for two years with minimal complaints.

Due to new guidelines, when Medicaid found out Blue United was sending LPNs to care for Lavonda, they stopped funding the company, eventually forcing it to shut down completely. Thankfully for the Smiths, though, the owner of Blue United was familiar with Lavonda and her situation, so he paid out-of-pocket to ensure she never went without care when Medicaid stopped funding them. It was a divine gesture, but Sandra still had to find detrimental care for her daughter.

Sandra eventually moved on to another company. We’ll call the company Cross Healthcare Services, but they also needed help finding full-time RNs. The RNs from Cross Healthcare Services mainly traveled from Brookhaven and other locations even further away. Due to the pay and distance, the nurses could not commit to caring for Lavonda full-time, which is mandatory to keep her nose, mouth, and trach clear; suction and aspirate her; and ensure that nothing blocks her airway.

Not finding full-time RNs put Sandra in a tough position. She had a full-time job working Monday-Friday as well as two other kids. She relied on nurses to provide her daughter’s care while she was away. Sandra made the hard decision to take unpaid leave from work. It put severe emotional, physical, and mental stress on her.

While caring for Lavonda, Sandra continued looking for care companies, but each had the same problem. Sandra had to be both nurse and mother for more than seven months. Through it all, Sandra was determined to bring about change. She continually called doctors, disability assistance programs, local, state, and federal governments, and Medicaid advocating for her situation, trying to bring change to the process and care for her daughter.

Prayerfully in September 2022, Medicaid and the Board of Nursing came together on the terms of the scope of practice for LPNs and RNs. After reviewing the case, they determined to approve the utilization of LPNs for private duty situations like Lavonda’s when RNs are not available. The change allowed Sandra to return to work full-time, but the overall challenge of finding and keeping qualified nurses to provide care remains.