Lori Leskin lives every day with the fear that her daughter Sami could get sick and have to go to the hospital.
Sami is non-verbal and has a seizure disorder.
“I’m terrified of her getting sick, having breathing problems, unable to communicate how she feels, possibly being intubated. The thought of that is absolutely terrifying for me,” Leskin said.
Leskin knows what it would be like because Sami had to be hospitalized last year with pneumonia.
“I spent seven weeks in the ICU with her. I can’t imagine her going through that on her own. Unthinkable for me,” Leskin said.
Leskin is not alone.
There are 50,000 individuals in Connecticut with Intellectual and Developmental Disabilities.
Three weeks ago, Gov. Ned Lamont made it possible for the 5,000 disabled adults in group homes and other congregate settings to have a care person accompany them to the hospital. But individuals like Sami are not included.
Tom Fiorentino, chairman of the ARC of Connecticut, said New York made this possible for the I/DD community and it’s past time Connecticut did too.
“They allow someone to be there with that person,” Fiorentino said. “I think they did that for a couple of reasons. One is just hospital efficiency. You don’t want somebody in the middle of your hospital in the middle of a health crisis who might be non-verbal.”
Asked if he would consider such a move, Lamont said “Let me think about that. It certainly makes good intuitive sense to me.”
The Department of Development Services says they are working to reach a resolution with the Department of Public Health and the Connecticut Hospital Association and hope to have guidance early next week.