Golisano Institute for Developmental Disability Nursing Receives Special Olympics Health Grant

December 9, 2024

The Golisano Institute for Developmental Disability Nursing at St. John Fisher University received $50,000 through the Special Olympics Health 2024 Systems Change in Inclusive Health Subgrant, funded by the Centers for Disease Control and Prevention. The grant will fund the creation of professional development materials that will prepare advanced practice providers (APPs) to deliver quality care to individuals with intellectual and developmental disabilities (IDD).

A nurse listens to a patient's heartbeat.

Individuals with IDD face alarming health disparities, including a lack of preventative care, preventable illness, and a higher mortality rate than their peers without disabilities. The Golisano Institute for Developmental Disability Nursing was established in 2018 with support from The B. Thomas Golisano Foundation and a personal donation from Tom Golisano. Since its inception, the Institute has worked to create an international cadre of nurses with the skills, experience, and competencies to care for individuals with IDD.

 Part of this effort is the development of educational modules for advanced practice provider primary care residency programs. Advanced practice providers are licensed to diagnose, treat, and manage many common medical conditions.  Five initial modules were created in 2020-2021, also supported by Special Olympics. Designed for advanced practice providers including nurse practitioners and physician’s assistants, the content includes five asynchronous modules exploring inclusive health principles, health promotion, assessment, pelvic and reproductive health, and behavioral health. The curriculum also features guidance for clinical experiences and opportunities for in-person case discussions. The Institute designed the curriculum so that it can be easily integrated into existing residency programs nation-wide.

The initial five modules have been piloted and evaluated with five cohorts of nurse practitioners and medical residents at Highland Family Medicine in Rochester, New York. Through pilot feedback and interviews with residency program directors across the United States, the Institute identified recommendations for augmenting the content, including the addition of life-span modules that address pediatrics and aging, and the enhancement of behavioral health content to incorporate psychopharmacology. The subgrant will fund the creation of three new modules on those topics as well as a pilot phase and assessment of the content. The contents of this project are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.

The Institute aims to develop the curriculum and pilot the full package of eight learning modules to at least three advanced practice provider resident programs by the end of 2025. The program design is being developed using guidance from the Consortium for Advanced Practice Providers.

“The ultimate goal of this project is that every APP completing a residency program in the U.S. is competent and confident to care for this population and lead system change to improve policy, practice, and outcomes for persons with IDD,” said Dr. Holly Brown, executive director of the Institute. “We plan to work with a group of early adopter residency programs to evaluate and document impact while supporting broader efforts to make the case to peer programs. The Institute will advocate for integration of this IDD-inclusive content in the accreditation standards for residency programs.”

This work aligns with the Special Olympics’ mission of creating global, systematic change that improves the health care of individuals with IDD.

“Advanced Practice Providers, in particular nurse practitioners provide the most health care for people with IDD and this program will give them the skills and knowledge to provide better care and improve health outcomes for the population,” Brown explained. “In general, advanced practice providers can play key roles in systems change, enhancing the care delivered to patients throughout their organizations. We anticipate significant multiplier effects on health care and beyond the residents and patients they directly serve.”

To learn more about the Golisano Institute for Developmental Disability Nursing, visit go.sjf.edu/golisanoinstitute.