Creating inclusive care: Fellowship equips students to serve patients with disabilities

When Allison P. Edwards, DrPH, MS, RN, noticed many of her students felt uneasy about interacting with patients with disabilities, she saw it as an important teaching moment to foster understanding and confidence.

“My students had the opportunity to enhance their approach to caring for patients with disabilities, and I saw a critical need to bridge a gap in knowledge,” says Edwards, who leads the disabilities fellowship for undergraduate students at Cizik School of Nursing at UTHealth Houston. Edwards wrote the proposal for the program’s creation and developed its curriculum. The program is generously supported through the Joan and Stanford Alexander Professorship in Neurodevelopmental Disabilities.

Since one in four Americans has some form of disability, even nurses who do not specialize in this area will encounter a person with a disability.

“Providers need to know that health concerns can manifest differently in these patients,” she says. “Their behavior could be a cry for help, but they may not be able to articulate what is wrong.”

Since 2018, the fellowship has provided specialized training to more than 75 nursing students, equipping them with the knowledge and skills to meet the unique needs of patients with disabilities. Fellows gain hands-on experience by rotating through clinical sites selected from a total of 16 locations. This experience provides exposure to patients with a wide range of disabilities, covering neurodevelopmental conditions such as autism, Down syndrome, or cerebral palsy; acquired disabilities like spinal cord injuries, traumatic brain injuries, amputations, and burns; and progressive disabilities such as amyotrophic lateral sclerosis, dementia, and Alzheimer’s disease.

Current fellow Sarah Damron has encountered a spectrum of emotions during her rotations. She faced heartbreak upon learning a patient was refused an appointment by a specialist because that doctor was unfamiliar with treating patients with disabilities. Yet, she found inspiration in a patient who, despite not being able to feel her legs, is passionately pursuing a career in cosmetology.

“Some of this work is really moving, but some hurts my heart. We have to learn to deal with all of that. That’s what nursing is,” Sarah says.

Logan Allen credits the fellowship with transforming his approach to disability care and breaking down many of his initial misconceptions. A pivotal moment came when he connected with a patient with Down syndrome who loved discussing birthdays, demonstrating the engagement possible in conversations with all patients, regardless of cognitive abilities.

“After he went to his appointment and came back to see me for his flu shot, he remembered my birthday. Many people struggle to remember a name, and he not only remembered mine but my birthday, too,” Logan says. “Then we talked about sports. He was awesome.”

This experience left a lasting impression on Logan and reinforced the fellowship’s focus on fostering inclusivity in patient care.

“I may need to approach communication differently for a patient with developmental challenges, but my focus is always on ensuring I assess thoroughly and gather the same key information,” he says. “Everyone deserves the same standard of care.”

The fellowship’s clinical experiences are inspiring these nursing students to innovate to meet their patients’ needs. Sarah had some insights while helping a patient after a dental procedure that required sedation. When Sarah wheeled this patient, who is nonverbal, to her car, the patient immediately grabbed her water bottle.

“That made me realize she had been thirsty but couldn’t tell us and how that might be true for other patients, too,” Sarah says. “I thought that night about making picture boards so patients can point to what they need or identify their pain levels.”

Sarah is grateful that Cizik School of Nursing offers this program, as no other nursing schools in Texas offer a similar option.

“It’s important to learn how to meet patients where they are,” she says. “I want to be able to give care to everyone, no matter what condition they have.”

With increased philanthropic support, the program could expand to provide additional stipends and educational materials, training even more nursing students and graduate students to deliver skilled, compassionate care to all of their patients.