HARTFORD, Conn. – 2020 was a crucial year for Nick Sinacori. The 25-year-old man from West Simsbury, who has intellectual disabilities and autism, was ready to leave his parents’ home and live alone for the first time.
Then the coronavirus crisis struck.
“It was a challenge,” said Sinacori. “I was really looking forward to my freedom.”
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People with intellectual disabilities were particularly vulnerable to the social and emotional upheaval caused by the pandemic. Restrictions on daily activities, mask mandates, and other rules designed to stop the virus from spreading all contribute to mental stress, especially in people with autism, experts say. Public health policies that limit social interaction deepen isolation for both people with disabilities and their families.
There are also increased health risks. Many people with intellectual and developmental disabilities – a broad category that includes Down syndrome and other chromosomal diseases, as well as cerebral palsy – are immunocompromised or have underlying medical problems that make them more prone to infection. They often live in group homes where it is more difficult to maintain physical distance.
They’re Also More Likely to Die: An insurance claims analysis by FAIR Health, a nonprofit focused on greater visibility into healthcare costs, found people with intellectual and developmental disabilities had a three times higher death rate from coronavirus than people without such an obstruction or disorder.
“Infection and death rates across the country have been quite high compared to the general population,” said Win Evarts, executive director of The Arc Connecticut, the state affiliate of the country’s largest advocacy group for people with intellectual disabilities.
“I’m happy to say that the state’s Department of Developmental Services has been proactive in making the Connecticut numbers a lot better than the national ones,” said Evarts.
During the first wave of the pandemic, the department moved some of its services online, a move that proponents say has saved lives despite keeping more people with disabilities away from work, day programs and other support networks. “Every action has a reaction, and the by-product of that was increased isolation,” Evarts said.
According to statistics compiled by the department at the end of November, 549 people cared for by DDS have been infected with the corona virus. 30 died. The Connecticut death toll at that time was 4,900.
“The virus has created incredible challenges for the people we support and the way in which such support is provided,” said Krista Ostaszewski, spokeswoman for the department.
“Our community has faced tragic losses and immense difficulties, but in the face of adversity, we continue to seek inspiration through the acts of kindness, support and perseverance that will help us move forward together,” said Ostaszewski.
“We felt like he had a good life.”
Sixty-one year old John Joseph Griffin Jr., known to everyone as “Jackie,” was an excellent Special Olympian who worked for JC Penney at Westfarms Mall for years and lived in a group house in Simsbury.
He got sick in the summer. “He had trouble swallowing,” said his mother, Frances Griffin. After his discharge from the hospital, he was transferred to the Riverside Health and Rehabilitation Center in East Hartford.
“One day they called my daughter and said, ‘Your brother is not doing so well,'” said Frances Griffin. “So we all went to see him … the next day he died.”
Jackie Griffin died on August 29; His death certificate lists COVID-19, but his parents said they weren’t sure what exactly happened. “They said he had the virus, but we don’t know what he died of,” said Frances Griffin.
Their son lived with them until he was 50 years old. One of his – and his parents’ – proudest moments came in 1980 when he graduated from Conard High School and received a standing ovation from his classmates.
“We felt he had a good life,” said Frances Griffin.
The increased risks for people with developmental and intellectual disabilities have raised questions about the spread of a coronavirus vaccine. Historically, these people have faced discrimination and other barriers to quality health care, and proponents say they deserve to be at the forefront when a vaccine becomes available.
“This is an overlooked group,” said Stephen Morris, executive director of Favarh, The Arc’s Farmington Valley subsidiary. “As we near a time when a vaccine is available, priority must be given to people with (disabilities), as well as people who live in nursing homes.”
In the early days of the pandemic, Favarh shut down most of its day programs and workplaces. “As things moved, we started reopening our day programs and employment programs,” said Morris. “But some people didn’t come back because they had medical complications themselves or couldn’t wear a mask. People have been home a long time and it affects their health in different ways. “
Nick Sinacori spent the first few months at home with his family; “We ran a lot,” remembers his mother, Suzanne Sinacori.
Sinacori is now back behind the cash register and bussing tables at BeanZ & Co., a coffee shop in Avon that employs people with disabilities.
“BeanZ is like family,” Sinacori said. “When the pandemic broke out, I was out from March to June. I really missed seeing my colleagues. “
One such employee, Lauren Traceski, 28, said the pandemic had caused a lot of emotional upheaval. “I feel like I’m on a roller coaster,” she said.
Traceski recently got engaged and had planned to move in with her fiancé earlier this year. Like Sinacori, their plans have been delayed by the COVID-19 crisis. “I just want to start our life together,” she said.
Both Sinacori and Traceski are moving into a new apartment complex in Canton developed by Favarh to accommodate disabled and non-disabled tenants. The complex, which will initially open in March, should now be ready by the end of the year.
Sinacori is also keen to start a new chapter, but he said, “I’m trying to learn to be patient.”
His mother said she had seen her son mature in recent months. “A few years ago I didn’t know if he could do it,” said Suzanne Sinacori. “He’s more sensitive. This taught him other skills. “
Morris was impressed by the way people with intellectual and developmental disabilities adapted to new realities during the pandemic.
“We have these preconceptions that someone who has an intellectual disability that affects part of their life will be more responsive to things like the mask requirement,” said Morris. “While they are at a higher risk of increased health complications in terms of coping with the social consequences, I think they are doing a phenomenal job.”
© 2020 The Hartford Courant
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