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BUILDING ON A LEGACY
How $50 Million will transform the lives of people with intellectual and developmental disabilities
The year could have been 2044, or close to it, before the intellectual and developmental disabilities (IDD) clinical care and research at the University of Rochester Medical Center (URMC) would be able to merge in an unparalleled way and, possibly, break ground on a facility dedicated to bettering the lives of people living with IDD. But instead, on June 13, 2024, entrepreneur, philanthropist, and civic leader Tom Golisano made a historic $50 million commitment to the University of Rochester to build the Golisano Intellectual and Developmental Disabilities Institute at the University of Rochester Medical Center.
intellectual and developmental disabilities and their families.”
“Creating a better world for people with IDD has been a passion of mine for over 40 years,” Golisano said. “URMC’s vision for the new Golisano IDD Institute takes that dedication to a new and unprecedented level, putting patients at the center of every focus and providing one-stop integrated care and coordinated customized services. The impact will be an enhanced quality of life and access to care that, before now, has only been a dream for people with
“I am proud that Tom finds our medical center worthy of his investment,” said David Linehan, MD, CEO of URMC, dean of the School of Medicine and Dentistry, and senior vice president for Health Sciences for the University of Rochester. “There could be no better home for the Golisano IDD Institute, a center that will set the global standard for improving the lives of people with special needs, than the University of Rochester Medical Center.”
It is the largest single gift in the University’s history, and it will help build a new world-class transdisciplinary center to provide solutions to the traditionally underserved IDD population. Approximately 19,000 people are affected locally, 120,000 regionally, and 200 million worldwide. “We are now in the position to build a truly integrative IDD institute and to launch new critical initiatives,” said John Foxe, PhD, professor of Neuroscience, director of the Del Monte Institute for Neuroscience, and the founding director of the Golisano IDD Institute. “This would have taken us another two decades to realize. But Tom’s gift catapults us 20 years into the future.”
The year may be an arbitrary estimate of the time money could buy. However, the work is anything but, as Foxe explains. The institute will serve as a pivotal hub for advancing, advocating, serving, treatments, and education related to IDD. The work done at the institute will inform clinicians and policies around the world. Leading and building an institute like this is why Foxe was recruited nearly a decade ago by retired CEO of URMC, dean of the University of Rochester School of Medicine and Dentistry, and senior vice president for Health Sciences Mark Taubman, MD.
A Storied History
Clinicians and scientists at URMC have been at the forefront of research and care for people living with IDD for decades. Nationally recognized leaders in autism research and treatment, such as Susan Hyman, MD, professor of Pediatrics, and Tris Smith, PhD, the former Haggerty-Friedman professor in Developmental and Behavioral Pediatrics research, transformed the landscape of care and understanding of interventions for the disease. Smith’s research helped move treatment for children with autism toward behavioral interventions. Hyman’s work helped inform the American Academy of Pediatrics recommendations that early intervention for symptoms associated with autism is critical to improving outcomes among children, even before a formal diagnosis.
For 75 years, the Department of Pediatrics at URMC has provided care to children with IDD in our community. In the early 1960s, the division of Developmental and Behavioral Pediatrics began providing clinical services specifically for children with autism. Past department chairs, such as Bob Haggerty, MD, Lissa McAnarney, MD, Nina Schor, MD, PhD, and Pat Brophy, MD, moved this important work forward, cultivating a space where some of the most complex patients receive care. Today, Jill Halterman, MD, chair of Pediatrics and physician-in-chief at Golisano Children’s Hospital (GCH), leads the GCH team that continues to improve care, health, and quality of life for individuals with IDD.
As the population of people with IDD began to age, the Medical Center opened one of the nation’s first Complex Care Centers. It is a place where adults with IDD and complex needs could go for much of their medical care. Along with primary care, the center houses a multitude of specialties to integrate services with specially trained providers including dentists. Adela Planerova, MUR Dr, MS, is the director of dental services at the center that served more than 900 patients in 2023.
Oral health is the number one unmet health care need for people with an IDD. Eastman Institute for Oral Health (EIOH) is the largest provider in the Rochester region for people with complex needs. Several innovative techniques for managing patients with IDD such as desensitization, acclimation, gradual exposure therapy, lotion for touch therapy, aroma therapy, music and low light for relaxation, were developed by an EIOH alum. Today, the institute is led by Director Eli Eliav, DMD, PhD, and serves nearly 2,000 people with IDD a year from more than 40 counties in its community clinics, specialty care clinics, and at Strong Memorial Hospital. Wayne Lipschitz, DDS, MS, leads its Specialty Care Clinic and has performed oral surgeries on more than 3,000 patients with IDD. Its residency training programs train dentists and dental specialists to better serve patients with IDD.
Training is a cornerstone of URMC. In 1994, the National Institutes of Health (NIH) designated the Medical Center as a Leadership Education in Neurodevelopmental Disabilities (LEND). This program has supported the training of health professionals, including dentists, MDs, physical therapists, social workers, nurses, and others, to work with and care for people with IDD. Laura Silverman, PhD, associate professor of Pediatrics, is the program director who helps teach professionals from different disciplines how to be leaders in the field of developmental disabilities. LEND is one of three federal designations related to IDD at the University. The longest-standing designation is the University Center of Excellence in Developmental Disabilities (UCEDD). Suzannah Iadarola, PhD, associate professor of Pediatrics and Public Health, is the current director of the federally funded program that develops community partnerships, fosters accessibility and inclusion, and translates research into best practice, with and for people with IDD. The University received the third federal designation in 2020, becoming an Intellectual and Developmental Disabilities Research Center (IDDRC). The center is co-led by Foxe and Ania Majewska, PhD, professor of Neuroscience. This final designation thrust the University onto the short list of eight institutions with the trifecta of federal awards related to IDD, giving a nod to its research, training, care, and community partnerships.
Within a year of receiving the IDDRC designation, the University partnered with Mary Cariola Center, an education and life skills center for people with severe IDD and complex medical needs, to understand the impact of the COVID virus on the IDD community. Along with providing the school with real-time test results and mitigating the virus by identifying asymptomatic cases, this project is informing how airborne illnesses spread and impact this type of setting.
Informing The World And Bettering Lives
The Golisano IDD Institute will coalesce the years of tradition and growth and build upon the University’s nearly $80 million investment in IDD programs over the past nine years. It will help close gaps, address challenges, meet demands, expand educational opportunities, and community partnerships.
IDD clinical care and research will be brought together in one building. It will include a second Complex Care Center, become a primary training site for healthcare providers specializing in this area of care, and expand the EIOH Specialty Clinic and telemedicine services.
Developmental and Behavioral Pediatrics, as well as the LEND and UCEDD programs, will expand their integrated care and developmental disabilities training functions, and collaborate across the institute to ensure advocacy, accessibility, and education are relevant to the needs of the IDD community. Researchers in the IDDRC and Del Monte Institute for Neuroscience will advance diagnostics and provide genetic testing to leverage our understanding of IDD.
“We can now purchase the highly sophisticated tools required to allow breakthroughs in diagnosis and treatment, hire and train more professionals, and better meet the growing demand for services,” Foxe said. “It is a truism that the test of the strength of a great society is to be found in the ways it treats its most vulnerable. Here in the new Golisano IDD Institute, we will hew to a simple but powerful maxim—that no person shall be defined by their limitations, but rather by their possibilities.”
