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Mary Cariola Center, URMC to study how COVID-19 affects people with disabilities

Racquel Stephen

Two local agencies will work together to help scientists better understand how COVID-19 affects people with intellectual and developmental disabilities.

Mary Cariola Center in Rochester is participating in a national study led by UR Medicine’s Del Monte Institute for Neuroscience.

“This study means the world to us, to our families, our staff, our students. Some might say it's a godsend,” said Karen Zandi, Mary Cariola’s president/CEO.

Zandi said she also sees this opportunity as a way to keep her school operating safely.

“It will help us understand how to best test the population, how COVID spreads in school settings, and is imperative in keeping those with IDD safe,” Zandi said.

The $4 million project, funded by the National Institutes of Health, will allow the University of Rochester Medical Center to collect testing and antibody samples from some of Mary Cariola’s students and staff over the next two years to help provide critical insight into how the virus spreads among the vulnerable population. The data collected during this study will be merged with information collected at other sites across the country.


Credit Racquel Stephen / WXXI News
Dr. John Foxe, Director of Del Monte Institute for Neuroscience


“Ultimately, this study will have major implications for schools across the United States and specifically for schools that serve vulnerable students,” said Dr. John Foxe, director of the Delmonte Institute. 

According to the NIH, an unvaccinated person with intellectual and developmental disabilities is four times more likely to contract COVID-19, and eight times more likely to die from the disease than someone without an IDD. 

Foxe said this research will help institutions like Mary Cariola make the best decisions for its students and staff and to communicate effectively.

“A big part of our project here is to try to better understand how do we get our message out to the folks in the (IDD) community in a clearer, more cogent, coherent way, so that they can make the choices that they need to make,” Foxe said.

Sarah Tedesco’s son Harry is one of the students participating in the study. She said her decision to enroll Harry, who has autism and an intellectual disability, was motivated by the lack of COVID-19 information available to parents seeking answers for children with disabilities. 

“Having Harry participate in the study seemed like a way for him to make a valuable contribution to helping families like ours with these kinds of decisions,” Tedesco said.

In addition to collecting research samples, the Del Monte Institute will also have a mobile vehicle that will allow them to travel between the school and students’ homes to test and track those who may test positive.

Racquel Stephen is a health and environment reporter. She holds a bachelor's degree in English literature from the University of Rochester and a master's degree in broadcasting and digital journalism from the S.I. Newhouse School of Public Communications at Syracuse University.