All summer, Christopher Best II eagerly awaited his first day of kindergarten. But instead of joining his classmates at school in August, he stayed at home. 

Five-year-old Christopher depends on a mobile ventilator and a tracheostomy tube to breathe. His doctor recommends that a one-on-one nurse attend school with him to manage his care and respond in case of an emergency.

But two months into the school year, Madison County Schools has not hired a dedicated nurse to care for Christopher, a scenario disability rights advocates say is not uncommon for children with complex medical conditions. 

Emily Catazaro, Christopher’s mother, is frustrated by the delays that have inhibited her son from attending school. 

“He cries every day because he can’t go to school,” said Catazaro, who moved her family from Copiah County based on recommendations from Christopher’s doctors about the special education services in Madison County schools. 

A week before the school year began, district officials informed Catazaro they had assigned an interim nurse to care for Christopher at school. Concerned that the nurse did not have adequate tracheostomy experience, including practice completing an emergency tracheostomy tube change on Christopher, Catazaro, a registered nurse herself, requested that the nurse receive further training. 

But by the time school officials met with Catazaro and agreed to allow her to provide additional training to the nurse on Aug. 13, two weeks later, district staff said they would have to re-offer the position to the interim nurse. 

Since then, neither an interim nor permanent nurse has been assigned to Christopher. Without a nurse to care for him at school, Christopher receives a total of five hours of instruction at home each week. 

On Sept. 30, the district told Catazaro in a meeting it will contract with a private nursing company to provide one-on-one nursing care for Christopher at school. 

A school staff member contacted Catazaro to schedule the meeting Sep. 20, eight days after Mississippi Today reached out to Madison County Schools about Christopher’s case. 

Madison County Schools declined to answer questions about Christopher’s case. The district also declined to respond to inquiries about its special education, one-on-one nursing and homebound instruction policy and staffing, saying those responses could be construed to violate student privacy. 

“The teachers, staff, and administrators of Madison County Schools are committed to ensuring they meet the unique and individualized needs of all their students. The District is committed to following all state and federal laws, regulations, and policies with respect to providing services to its students,” district communications director Gene Graham told Mississippi Today in an email.  

Under the Individuals with Disabilities Education Act, first passed in 1975, children with disabilities are entitled to receive a “free appropriate public education” in the least restrictive setting possible. The federal law marked a growing effort to include all children in schools by providing support services to children with disabilities instead of educating them in self-contained classrooms. 

School districts are required by law to provide a full-time nurse to students if their health condition necessitates it, said Lily Moens, Christopher’s attorney and a law fellow at the Mississippi Center for Justice who focuses on special education advocacy. 

Moens spoke to Mississippi Today about the Individuals with Disabilities Education Act and special education challenges in Mississippi, but did not answer questions about Christopher’s case. 

“There is an obligation for the school to provide an education that is in the least restrictive environment,” she said.

Given Christopher’s dependence on a ventilator, it is “recommended and preferred” that a specially trained, one-on-one nurse care for him during the school day, Christopher’s doctor wrote in a letter provided to the school district.  

Christopher faces severe health risks in the classroom, including low levels of oxygen, which can be difficult to detect without a trained eye, or equipment failure. Because Christopher is non-verbal and predominantly conveys ideas with sign language, it is crucial for him to have a dedicated nurse who can communicate with him and understands his complex health needs, said Catazaro. 

“Christopher is a bright and capable student who deserves the experience of learning in a classroom setting among his peers,” said Christopher’s doctor in the letter. 

Staffing challenges

Staffing shortages can challenge the ideals of the Individuals with Disabilities Education Act, said Diana Autin, the executive director of National PLACE, a nonprofit membership organization that advocates for families.

Since the COVID-19 pandemic, shortages of teachers, speech and occupational therapists and nurses have caused difficulties for school districts aiming to provide adequate special education services to students, she said. 

Registered nurse vacancies at Mississippi hospitals reached their highest numbers in over a decade last year. 

Madison County Schools officials assured Catazaro in a meeting on July 25 that the district would provide a one-on-one nurse for Christopher. 

But there is no enforceable timeline for employing such staff if the school district is not able to hire for the position, said Moens. 

Catazaro herself interviewed for the job and received a rejection letter dated Aug. 21. 

“It is very difficult to get any kind of one-on-one assistance in our state,” said Pam Dollar, the executive director of the Mississippi Coalition for Citizens with Disabilities and Christopher’s advocate through the Mississippi Parent Training and Information Center. “… If the support that a child needs is too costly, the school district is going to push back.” 

The Mississippi Parent Training and Information Center, a program of the Coalition for Citizens with Disabilities, educates parents of children with disabilities about their educational rights and supports them as they navigate the process of developing an individualized education plan with school districts. 

“Especially in regions of the state that are much more underfunded in terms of their local school systems, (staffing) presents a big challenge,” Moens said. 

Madison County School District has the fifth highest revenue of all school districts in the state. It received $189 million from local, state and federal sources during the 2022-2023 school year.

‘He’s getting left behind’

In late April, Christopher began attending Madison County’s public preschool with a one-on-one nurse hired by the school district and trained by Catazaro. 

But as the school year came to a close, Catazaro said she learned that Christopher’s one-on-one nurse would not continue working with him during Extended School Year, a program public schools are required to provide to qualifying students with disabilities. 

She was told a nurse would check on Christopher at 15-minute intervals, despite his doctor’s recommendation that he have a full-time nurse. 

“The nurse will be in Christopher’s ESY classroom to assess him every 15 minutes,” wrote Vicki Doty, the director of special education for Madison County Schools, in an email to Catazaro on June 3, the first day of extended year programming. 

Given his complex health needs, check-ins only every 15 minutes could have dire consequences for Christopher, said Catazaro. 

She opted to remove Christopher from extended school year programming until a one-on-one nurse could be hired, and requested a mediation with the school district to resolve the disagreement. 

Madison County later offered Christopher one additional hour of instruction each week at home to make up for lost extended school year classroom time. 

In mediation, the school requested a medical review from a medical doctor rather than Christopher’s usual nurse practitioner, said Catazaro. After reviewing Christopher’s doctor’s recommendation that he be assigned a one-on-one nurse, the county told Catazaro they would secure a nurse for Christopher while at school.

But two months later, the school still has not provided a nurse.

“What about no child left behind? He’s getting left behind,” Catazaro said.

This article first appeared on Mississippi Today and is republished here under a Creative Commons license.