Kevin Skeggs was smiling under his mask. The 24-year-old sat with his mom in the activity room of the Arc of Litchfield County in Torrington on Friday.
Christine Skeggs briefly pulled back her son’s mask to show his big smile. He had a good reason -- Kevin just received his first dose of the coronavirus vaccine at a clinic set up by the state for residents with intellectual and developmental disabilities, or IDD. This group includes people with Down syndrome, cerebral palsy or, in some cases, autism spectrum disorder.
Kevin is nonverbal. His mother says he “lives his life on his face and in his movements, and his sounds. And [right now] he misses everybody.”
Skeggs says Kevin is happy just to be around other people, and she knows he’s eager to be getting out more -- he’s excited every time they get in the car.
With all Connecticut adults now eligible for the vaccine, the focus has turned to getting shots in arms. Dedicated clinics like the one at the Arc are reaching some of the most vulnerable populations. But many in the disabled community are still left to navigate the process on their own.
The Arc, which hosted Friday’s clinic, is an organization that provides day care, job training and other support to people with disabilities. Families of residents with IDD were alerted by their caseworkers and booked appointments.
Staff at the Arc welcomed back familiar faces after a long time of social distancing. Parents reacquainted themselves with friends from the Before Times. And Skeggs shared a word of optimism from behind her mask.
“It’s a relief to have a vaccine,” she said. “And it’s been hard having him get one because he didn’t fit the other [eligibility] groups. So to be able to have this clinic today for people with IDD is important.”
The Connecticut Department of Developmental Services works with a population of about 17,000 individuals with IDD. Two-thirds of that group is under the age of 44, according to DDS. Most of that population just became eligible for the vaccine.
But that doesn’t begin to capture the total disability population in Connecticut, which is estimated at close to 400,000 -- 11% of the state’s population.
Stephen Byers, an attorney with Disability Rights Connecticut, said he’s happy to see dedicated vaccine clinics for some in the disability community. But they don’t cover everyone.
“Except for people with intellectual and developmental disabilities, who are clients of Connecticut’s Developmental Disability Services, the governor and state have offered no specific plan to ensure that the vaccination is made promptly available to those with disabilities,” Byers said.
DDS said that those with intellectual and developmental disabilities who are under state care have been or soon will be vaccinated.
But Byers said those outside this group are left to fend for themselves.
Doris Maldonado is among them. She’s finding it difficult to get her son Tyler a vaccine. He works in a supermarket, and as a 17-year-old he is eligible only for the Pfizer vaccine, making the search even harder.
Maldonado advocates for people with disabilities and their families in both English and Spanish-speaking communities. Maldonado herself is disabled. So is her other son, Tyler’s twin, Dylan.
While all adults are eligible for the vaccine, it doesn’t mean they have an equal opportunity to get it. Transportation, technology and ability to book an appointment are all bigger lifts for folks in the disability community. The issue isn’t who was prioritized by the state, Maldonado says, it’s who has access.
The good news is that Maldonado thinks the solution is simple. “If people would just have a conversation with people with disabilities, and say ‘how can we do this better?’ then it would be better,” she said.
Maldonado said her son’s disabilities are sometimes invisible, and for that, he experiences another kind of marginalization. She sees that same phenomenon happening in vaccine access for the disability community.
"The top down [is] looking at us and wondering, ‘Why aren’t those people doing what we do?’ We’re not like you, we’re not all the same, but we should have equitable access.”
Those in charge of the vaccination effort, Maldonado said, should consider that while the system may work for them, it may not be designed to work for all.
Ali Oshinskie is a corps member with Report for America, a national service program that places journalists into local newsrooms. Ali covers the Naugatuck River Valley for Connecticut Public Radio. Email her at aoshinskie@ctpublic.org and follow her on Twitter at @ahleeoh.
