New study at Mary Cariola Center, URMC looks at COVID-19 impacts on special needs students

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ROCHESTER, N.Y. (WROC) — A critical new effort has been announced to help keep students with intellectual and developmental disabilities safe during the COVID-19 pandemic. 

On Tuesday, the Mary Cariola Center and Del Monte Neuroscience Institute at URMC announced a $4 million dollar study that will focus on how the virus spreads among vulnerable populations and help schools provide a safe environment.

“The disease itself is truly something we do not want in any school, but especially ours. Our students with their disabilities and their medical complexities are very, very fragile,” said Karen Zandi, the President and CEO of Mary Cariola Center. 

Zandi said this new study will provide insight to the virus, help the center update and revise their safety practices frequently, keep students and staff healthy, and provide peace of mind to those who need a test. 

The research will also be provided for other schools to help them learn the best way to test students and provide insight on how COVID-19 can spread in school settings. 

“We want to test and test and test to make sure that if there’s an outbreak of the virus, we find that out as quickly as possible. We get those folks out of circulation for as long as they need to reset the virus doesn’t get into the school and run rife in the school,” said Dr. John Fox, the Director of Del Monte Institute for Neuroscience at URMC. 

Dr. Fox said this study is extra crucial because students with intellectual or developmental disabilities are 4 times more likely to catch COVID than others. 

“Then if they do catch it, they’re in the region of about seven to eight times more likely to succumb to disease. That’s a 32 fold increase in risk…and that’s a big deal,” Fox said. 

Dr. Fox said a big part of the study will be looking at how children with disabilities respond to antibodies and how long those antibodies last. 

“In the IDD population, many of the youngsters who have complex medical issues, we don’t know how long that’s going to last. So it’s important for us to track that and that’s one of the things we will be doing here over the next two years,” Fox said.

Part of the project includes keeping COVID out of schools. To do so, mobile testing units will also be used for students and staff members. 

“If a child is symptomatic, you don’t really want the child or the staff member to show up at the school. That’s a bad idea. We’re trying to cut off the infection on its knees. So we have a mobile testing unit that will go out to where the kids are to try to figure out who’s got the infection,” Dr. Fox said. 

Sarah Tedesco has already enrolled her son Harry in the study.  Harry has autism and has been part of Mary Cariola for five years.

“The challenges of wearing the mask and having increased hygiene protocols seemed insurmountable at the time. With time and practice and help, he’s made great progress in these areas,” Tedesco said. “However, with his limited ability to communicate, we do worry that if he were to contract the virus, we might not even know he was even sick until it was very serious.”

Harry has already been vaccinated through the study and Tedesco said she is glad all the research is being done at the center.

“Getting the blood draws and nasal swabs are very challenging for our son to say the least but being in a familiar environment does take a lot of stress out of the situation,” she said. 

Harry is now one of many kids locally paving the way for our country when it comes to testing among vulnerable populations of kids. 

Experts say this is a huge step forward for an important population in our community. 

“It’s really important for us to say, ‘don’t neglect our children, they are among the most vulnerable and medically fragile kids and if they get this virus, the outcome is very frightening,’” Zandi said. 

“We have a long history unfortunately in this country of not enrolling vulnerable populations in research and we need to proceed with a science-based approach when going through this pandemic and we can’t do that unless we conduct science in the very vulnerable populations that we are working so hard to help,” said Dr. Michael Mendoza, Monroe County’s Public Health Commissioner. 

This $4 million project is being funded by the National Institutes of Health. It could last up to two years.

To learn more about the Mary Cariola Center, its school and six residential homes, click here. 

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