Charles H. Sloan-After disabled 6-year-old dies on the way to school, parents speak out about safety

A mother is Charles H. Sloandemanding justice after her 6-year-old daughter died on her bus ride to school.

“My daughter's passing could have and should have been prevented,” said Najmah Nash, the mother of Fajr Atiya Williams.

“This was purely due to neglect and policies and procedures being disregarded,” she added.

Fajr died on her bus ride to school in New Jersey’s Franklin Township when bumps in the road caused her to slump in her wheelchair, making the harness that secured her to the chair become tight around her neck and block her airways.

Fajr had a rare chromosome disorder called Emanuel syndrome, which is characterized as a developmental and learning disability that stunts growth and development, according to the National Organization for Rare Disorders.

“She was just a vibrant kid, she was so happy. Her eyes were big and brown. And she would just draw you in just looking at her,” said Nash. “Although she was nonverbal, I believe she talked through her eyes.”

She has teamed up with other parents of disabled students, including Lauren Sammerson of the school’s Special Education Parent Advisory Council, who say they are working with the school board to ensure students with disabilities are protected in schools.

“I want the world to know that I, Najmah Nash, will not back down. I will not stop fighting for change,” Nash said. “And I will assure you with every fiber of my being to make sure that change comes and it comes now, and swiftly because I don't want no other family to feel the way I feel right now.”

A bus monitor, Amanda Davila, has been charged with second-degree manslaughter and second-degree endangering the welfare of a child in the death. She is accused by the Somerset County Prosecutor's Office of being on her phone and wearing headphones during the crucial time when Fajr was slumped in her chair.

This was in violation of policies and procedures, according to the prosecutor's office. ABC News has reached out to her attorneys for comment.

“We've entrusted these people to take care of our children,” Nash said. “They should be able to recognize if, and when, any child in their care is in distress.”

“We cannot stand by and not do anything for our children, especially when it comes to safety," Sammerson said, a mother of two children with disabilities.

Parents say transportation, communication and education have been at the center of the conversation.

Complaints about children being dropped off at the wrong locations, the need for data-driven individual educational plans for disabled students and communication with parents are just some of the subjects of upcoming debate between school officials and parents, according to Sammerson.

“For some of us, particularly children who are nonverbal, it can be very disheartening when you don't get any information and you're not sure exactly what they're experiencing, what happened,” Sammerson said.

She said the conversation has opened up for parents, students and educators to work together on how to best accommodate students who are disabled, which will make schools a better place for both disabled and able-bodied students.

"Inclusion is always a key to making sure that all voices are heard," Sammerson said. "And for those who have an ability, it's about sharing it with others. And if there's something that you aren't able to do, or maybe not able to do as well, others can help and provide that support as needed."

District Superintendent Dr. John Ravally said the district has policies, trainings, drills and modifications to help protect staff and students from such tragedies. In light of Fajr's death, the district "has taken additional steps to remind" bus vendors "of the expectations and ensure compliance."

Ravally, as well as other administrators, plan to meet with parents to discuss and remedy concerns.

Nash wants Fajr to be remembered for her "happy screams" and "crazy laughter."

"She started giving out high fives and waving at other classmates in school," Nash said. "It was just a beautiful sight to see how much she's grown over the years."