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 a big smile. He had a good reason — Kevin had 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 non-verbal. 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 to just be around other people, and she knows he’s eager to be getting out more — he gets 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 this one are reaching some of the most vulnerable populations. But many in the disability community are still left to navigate the process on their own.
The Arc hosted Friday’s clinic. The organization 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 old 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,” Skeggs 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 are 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 to be close to 400,000 people in the state — 11% of the population.
Stephen Byers, an attorney with Disability Rights Connecticut, says 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,” Byers explained, “the governor and state have offered no specific plan to ensure that the vaccination is made promptly available to those with disabilities.”
DDS said that those with intellectual and developmental disabilities who are under state care have been, or will soon be, vaccinated.
But Byers said those outside of this group are left to fend for themselves.
Doris Maldonado is among them. Right now, she’s finding it very difficult to find a vaccine for her son, Tyler. 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.
Although all adults are now eligible for the vaccine, that doesn’t mean they have an equal opportunity to get the vaccine. Transportation, technology and ability to book an appointment are all bigger lifts for folks in the disability community. The issue right now isn’t who was prioritized by the state, Maldonado says, it’s who currently has access.
The good news is that Maldonado thinks the solution to that 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 reflect on how the system may work for them, but 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.