Coronavirus Pandemic Takes Toll On Disability Community
HARTFORD, Conn. — For Nick Sinacori, 2020 was going to be a pivotal year. The 25-year-old West Simsbury man, who has an intellectual disability and autism, was poised to leave his parents’ home and live on his own for the first time.
Then the coronavirus crisis struck.
“It’s been challenging,” Sinacori said. “I was really looking forward to my freedom.”
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People with intellectual disabilities have been especially vulnerable to the social and emotional upheaval brought on by the pandemic. Restrictions on daily activities, mask mandates and the other rules designed to stop the spread of the virus contribute to mental stress, especially among those who have autism, experts say. Public health guidelines limiting social interaction deepen isolation, for both individuals with disabilities and their families.
There are heightened health risks as well. Many people with intellectual and developmental disabilities — a broad category that includes Down syndrome and other chromosomal conditions as well as cerebral palsy — are immunocompromised or have underlying medical issues that make them more susceptible to infection. They often live in group homes, where physical distancing is harder to maintain.
They also are more likely to die: An analysis of insurance claims conducted by FAIR Health, a nonprofit focused on bringing greater transparency to health care costs, found that people with intellectual disabilities and developmental disorders have a coronavirus fatality rate three times higher than those without such a disability or disorder.
“The rates of infection and mortality nationwide have been quite high in comparison to the general population,” said Win Evarts, executive director of The Arc Connecticut, the state affiliate of the nation’s largest advocacy organization for people with intellectual disabilities.
“I’m happy to say because of the proactive work of the state (Department of Developmental Services), the numbers in Connecticut are better than the national numbers by quite a bit,” Evarts said.
During the first wave of the pandemic, the department shifted some its services online, a move that advocates say saved lives, even as it kept more people with disabilities away from work, day programs and other support networks. “Every action has a reaction and the byproduct of that was increased isolation,” Evarts said.
According to statistics compiled by the department as of late November, 549 individuals served by DDS have contracted the coronavirus; 30 have died. Connecticut’s overall COVID-19 death toll at that juncture was approaching 4,900.
“The virus has created incredible challenges for the individuals we support and the way such supports are provided,” said Krista Ostaszewski, a department spokeswoman.
“Our community has faced tragic loss and immense hardship, but in the face of adversity we continue to seek inspiration from the actions of kindness, support and perseverance that help us move forward together,” Ostaszewski said.
“We felt like he had a good life.”
Sixty-one-year-old John Joseph Griffin Jr., known to everyone as “Jackie,” was a decorated Special Olympian who worked for years at J.C. Penney at Westfarms mall and lived in a group home in Simsbury.
He fell ill over the summer. “He was having problems swallowing,” said his mother, Frances Griffin. After his release from the hospital, he was sent to Riverside Health and Rehabilitation Center in East Hartford.
“One day they called my daughter and said ‘your brother’s not doing so good,'” Frances Griffin said. “So we all went over to see him … the next day he passed away.”
Jackie Griffin died on Aug. 29; his death certificate lists COVID-19, but his parents said they aren’t sure exactly what happened. “They said he had the virus but we don’t know what he died of,” Frances Griffin said.
Their son lived with them until he was 50. One of his — and his parents’ — proudest moments occurred in 1980, when he graduated from Conard High School and was given a standing ovation by his classmates.
“We felt like he had a good life,” Frances Griffin said.
The heightened risks faced by people with developmental and intellectual disabilities has raised questions about the distribution of a coronavirus vaccine. Historically, these individuals have faced discrimination and other barriers to quality health care, and, advocates say, they deserve to be near the front of the line when a vaccine becomes available.
“This is an overlooked group,” said Stephen Morris, executive director of Favarh, the Farmington Valley branch of The Arc. “As we’re approaching a time when there’s an available vaccine, people with (disabilities) need to be a priority, just like people who live in nursing homes.”
In the early days of the pandemic, Favarh shut down most of its day programs and employment sites. “As things evolved, we started to reopen our day programs and our employment programs,” Morris said. “But some people haven’t come back, because they have medical complications themselves or cannot wear a mask. People have been home for a long time and that impacts their health in different ways.”
Nick Sinacori spent those first few months home with his family; “we did a lot of walking,” recalled his mother, Suzanne Sinacori.
Sinacori is now back behind the cash register and bussing tables at BeanZ & Co., a coffeeshop in Avon that employs people with disabilities.
“BeanZ is like family,” Sinacori said. “When the pandemic hit, I was out from March ’til June. I really missed seeing my coworkers.”
One of those coworkers, Lauren Traceski, 28, said the pandemic has caused a lot of emotional upheaval. “I feel like I’m on a roller coaster,” she said.
Traceski recently got engaged and she had planned to move in with her fiance earlier this year. Like Sinacori, her plans have been delayed by the COVID-19 crisis. “I just want to start our lives together,” she said.
Both Sinacori and Traceski are moving into a new apartment complex in Canton developed by Favarh that will house tenants who have disabilities and those who do not. The complex, initially expected to open in March, is now scheduled to be ready by the end of the year.
Sinacori is also eager to start a new chapter, but he said, “I’m trying to learn to be patient.”
His mother said she’s seen her son mature over the past few months. “A couple of years back, I don’t know if he’d be able to do this,” Suzanne Sinacori said. “He’s more empathetic. This has taught him a different set of skills.”
Morris said he’s been impressed by the way those with intellectual and developmental disabilities have adapted to the new realities of life during the pandemic.
“We have these preconceived notions that just because someone has an intellectual disability that affects part of their life, they will have a harsher reaction to things like the mask requirement,” Morris said. “While they’re at greater risk for increased health complications, as far as coping with the social consequences, I think they’re doing a phenomenal job.”
© 2020 The Hartford Courant
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