Ability Beyond strict with virus precautions as it supported its disabled clients
BETHEL — Penney Parkes can’t talk to her son on the phone.
Her 28-year-old son, Eric, who has autism, lives in a group home run by Ability Beyond, a Bethel-based nonprofit that supports adults in Connecticut and New York with intellectual disabilities.
She has been able to see him outside at times over the past year, but COVID-19 restrictions on visitors are tight at the facility and talking to him on the phone is a challenge.
“When we tried [phone calls] in the beginning of the pandemic, that got him very upset,” said Penney Parkes, of Fairfield. “[He asked]
‘Why are you on the phone? Why aren’t you here? Why aren’t we going to Stew Leonard’s? Why aren’t we going to dinner? He doesn’t understand we’re in a pandemic.”
People with intellectual and developmental disabilities are three times more likely to die from the virus compared to patients without health conditions, according to an analysis from a nonprofit.
It’s why Ability Beyond, which serves about 3,000 people annually, has limited visitors and held many programs virtually.
“We’ve been really cautious,” said Jane Davis, chief executive officer of the nonprofit.
The approach has been effective, she said. COVID-19 rates among group home clients have been about one-third less than the surrounding community, she said.
The organization turned its Bethel headquarters into an “isolation hub” for clients who got COVID, with 28 beds and a “COVID positive” and “COVID possible” side, Davis said.
“It’s what kept our numbers incredibly low,” she said.
Vaccines critical
The state’s vaccine rollout does not prioritize people with disabilities for the shot — which led the nonprofit Disability Rights Connecticut to file a federal complaint.
Davis said her organization is advocating for the clients to be next in line, as well. Many clients are front-line workers, she said.
But the nearly 500 clients living in group homes were eligible for the vaccine. About 92 percent have gotten their first shot, while around 40 percent have both doses, Davis said.
Eric Parkes got his second shot on Feb. 22, his mom said. She and her husband, David, are getting their first dose on March 20.
Nearly all staff were eligible because they worked at the group homes, but fewer employees — about 25 percent as of a couple weeks ago — are vaccinated, she said. Staff has struggled to get appointments, she said.
Some day programs have been held in-person and families were allowed to visit outside, but the organization tightened restrictions when cases climbed again in late fall.
But with the vaccines and declining COVID-19 rates, the nonprofit is looking toward easing visitor restrictions at group homes and phasing into in-person day programs, Davis said.
Davis hopes outside visits will be permitted soon, two weeks after nearly all clients have had the second dose. She said the organization is still working out rules for family members with and without the vaccine.
But day programs will likely not resume 100 percent in-person until the fall, she said. This depends on when clients living with their own families can get vaccinated, she said.
“We’re being very careful about the phases and the space,” Davis said. “We’ll be watching just to make sure — because our community is so at risk — that the prevalence rates are staying low and it seems to be going well.”
The pandemic has put a financial strain on the organization, too. Davis estimated the nonprofit spent close to $1 million on isolation kits, special helmets for those who cannot tolerate masks and other personal protective equipment.
State agencies continued to reimburse the organization for its virtual programs, while the nonprofit has received federal COVID-19 relief funding. A fundraising gala will be held virtually and in-person at the Amber Room Colonnade on April 24.
‘He wasn’t isolated’
Penney Parkes said it’s been challenging not to see her son often.
“What I think has gotten us through the day is that we know he’s so well taken care of,” she said.
Penney Parkes said the organization has been “amazing” throughout the pandemic. Even without the day programs, Eric Parkes has grown by doing activities with his housemates and through the one-on-one support he receives, his mom said.
“He wasn’t isolated, which was incredible,” she said.
He has played croquet and wiffle ball outside, while his family has sent puzzles and a pretzelmaking set.
The pandemic has not been as severe on some clients’ mental health as Davis had feared, she said. It’s been “incredibly hard” for those living alone, but clients with roommates in the group homes have been OK.
“We’ve been working really hard for the folks residentially to keep everyone engaged and busy,” Davis said.
Virtual services, like Zumba, arts classes and an upcoming lip-sync battle, have helped clients on the day programs, she said.
“We’ve been trying to come up with things like [the lip-sync battle] occasionally to keep it fun and keep folks focused on positive things,” Davis said.
The hardest moment was when Eric Parkes had a seizure in April and his mom could not see him, Penney Parkes said.
“That was one of the worst days of my life,” she said.
He had another seizure in August. She sat outside and watched him through the window screen.
The family was permitted to visit outside for Eric Parkes’ 28th birthday on May 30. The backyard was set up with balloons and a cake.
“He was really happy and laughing and a little confused at the beginning,” Penney Parkes said.
The Parkeses have explained the pandemic to their son by calling it the “big flu.”
“He understands the flu,” Penney Parkes said. “He’s had the flu. But I don’t know that he can comprehend more than that. It’s been hard for us to comprehend, really.”