Alone in the hospital with no way to communicate. That has been the experience for some adults with developmental disabilities in our state throughout this pandemic.
When the ambulance came in April for their mother, who has a brain injury, Michele McDuell and Susan Fandacone said they expected at least one of them would be able to accompany her to the hospital. They said their mother is non-verbal when she is sick and they use a special language to communicate with one another.
“It was told to us that during these COVID times that are unprecedented,” McDuell said.
They were devastated when they were told that wasn’t possible. They said the hospital told them they wouldn’t perform any extreme measures to save their mother’s life.
“Unlike other times where families had the right and were the decision makers on their family members code status that if our mother was to code it would be the staff's decision not the family's decision and that they would not do CPR on our mother,” McDuell said.
Their mother, who went to the hospital for a kidney infection, contracted COVID-19 and was given a 1% chance of survival after being intubated.
“They had never seen a patient with my mother's baseline come off a ventilator or survive,” McDuell said.
But that’s what happened. After 35 days in the hospital, their mother went home where she’s now being cared for by her family.
“Through communicating with my mom, she thought we had abandoned her and that she wasn’t going to see us again. How terrifying for all these other families who are going through the same thing? It was a living hell,” McDuell said.
The sisters are grateful that now thanks to the help of advocacy groups that filed a complaint with the U.S. Civil rights office, no family will have to go through that they experienced.
“We are blessed so blessed our mom is home with us right now, but a lot of patients like our mom didn’t make it home. And how much of that is the COVID and the medical conditions and how much of that was them thinking they were abandoned when they thought death was an easier option?" McDuell asked.
Earlier this week the Office of Civil Rights mediated an agreement with the Department of Public Health and Connecticut hospitals to permit the entrance of a designated support person for a patient with a disability.
“The nature of the COVID virus it’s something that’s difficult to contain and the infection spread is so high,” Cathy Cushman said.
Cushman, legal director at disability rights Connecticut, said she understands why restrictions were imposed but it does those with disabilities a disservice.
“The disabilities are not just individuals with intellectual, developmental disabilities, but also people with altered mental state disabilities, other intellectual cognitive impairments, physical disabilities, as well as mental behavioral health disabilities,” Cushman said.
The new agreement goes into effect on Monday.