Summit Creates Network of Developmental Disability Nursing Experts

This August, the Golisano Institute for Developmental Disability Nursing (GIDDN) at St. John Fisher College brought together scholars, practitioners, and thought leaders in the field of developmental disability health care for a summit focused on education, practice, policy, scholarship, and leadership.

The purpose of the summit was to help the GIDDN team develop its Golisano Fellowship program, which aims to offer specialty training in intellectual and developmental disabilities (IDD) health care and policy and in turn, develop the next generation of nurses who will care and advocate for this unique population. The fellowship will be funded as part of the $5.8 million gift from Tom Golisano and the Golisano Foundation announced by Fisher in fall 2018.

“Fellowships are a common way that special practice is developed and leadership and policy skills are fostered,” said Dr. Dianne Cooney Miner, founding director of the Institute. “The summit generated remarkable, rewarding conversation about the care of individuals with IDD among an international, highly interprofessional group.”

The summit was originally designed to bring this group to campus, but the GIDDN team quickly pivoted as COVID-19 prevented in-person gatherings. Using Zoom and Ensemble to host and record the summit, the team was able to invite guests from the U.S. and abroad to participate. Nurse scholars, educators, and practitioners from Villanova University, University of Illinois at Chicago, Rush University, and Gulf Coast University attended, as did faculty from the University of Toronto and the Waterford Institute of Technology in Ireland, among others.

Dr. Steve Sulkes, a developmental pediatrician at UR Medicine and former president of the American Association of Developmental Medicine and Dentistry, along with Dr. Tiffany Pulcino, director of the UR Medicine Complex Care Center, joined the group. Ann Costello, executive director of the Golisano Foundation, and Dr. Alicia Bazzano, MD, Ph.D., MPH, chief health officer of Special Olympics, and representatives from the Autism Center and Alzheimer’s Association also offered their perspectives during the summit.

“It was so impactful to bring together these very accomplished folks, who are focused on IDD across ages and populations, and have them think about the fellowship and contribute to its curriculum development,” said Dr. Holly Brown, associate director of the Institute. “This is also the first step in creating a network of experts with specialized knowledge who are at the center of innovation and excellence in IDD care.”

The team also invited six family members of individuals with development disabilities to offer their guidance.

“A guiding principle for GIDDN has been keeping the voice of those diagnosed with IDD and their families and care givers at the center of our thinking and have their perspectives drive our work,” said Cooney Miner.

The GIDDN team will now take what they have learned from the summit to build a framework for the curriculum and formalize the fellowship’s admission criteria and application process. The team hopes to recruit 15 fellows for the inaugural cohort. While the initial plan was to host the fellowship during the summer months, Cooney Miner said summit participants expressed interest in a yearlong program and using technology to host guest speakers, panels, and webinars for the fellows.

“We’re focused on building a critical mass of nursing thought leaders who can incorporate IDD health care perspective in an intentional way in their everyday practice,” said Brown.