Like many people, in early 2021, Terrance Hasan attempted to log on and secure a vaccine appointment as it became available in New York.
Hasan, who has an intellectual disability, worked with his care coordinator, but couldn’t get an appointment.
“My care coordinator tried to set me up with getting the vaccine with the state and that was a little hard because the slots kept getting taken," Hasan said.
While it was hard for most people to find a vaccine in those early days, Americans with disabilities faced significant barriers to COVID-19 vaccine access.
In February, a Kaiser Health News investigation showed that among 94 vaccine websites from across all 50 states and the District of Columbia, almost all of them lacked accessibility features that would allow visually impaired Americans to book appointments or get general information.
Their letter included asking for access to include considerations for individuals with autism and other conditions where being in busy vaccination sites, for example, could be a sensory concern.
"Since each state has the option to develop its own vaccine registration system and distribution process, we ask that you ensure that these processes meet or exceed the requirements of the Americans with Disabilities Act and Section 504 and 508 of the Rehabilitation Act (29 U.S.C. 794d), as amended in 1998," the letter signed by Sen. Margaret Hassan of New Hampshire and 12 other senators said, in part.
So what ultimately helped Western New Yorker Terrance Hasan get his vaccine?
According to the agencies that coordinated vaccination for people with disabilities in Western New York and New York City, partnerships and agency-guided clinics were instrumental to vaccination in the areas they serve.
Western New York
Thomas Ess, the vice president of Emergency Management Safety and Security for People Inc., helped coordinate the vaccination effort among his agency and the Developmental Disabilities Alliance of Western New York.
"What made us successful in this was the ability to collaborate amongst the entire area and share, equitably, the vaccine when it was not as prevalent as it is now. Everyone was able to get what they needed. We were also able to specialize the environment," Ess said.
Ess explained to WBFO in April that DDAWNY agencies and local government realized they all had a role to play.
"The thought here was that we needed somebody to be in a task force almost to organize all this amongst all the agencies so that it was efficient. And, you know, because, frankly, the Department of Health couldn't or shouldn't have known, you know, every one of these people [who needed to get vaccinated]," Ess said. "So what we were able to do is assemble through the DDAWNY, the voluntary agencies, as well as state operations, to collaborate on a vaccine task force to work through the scheduling of all those prioritized persons, and then had the Erie County Department of Health come in and actually do the vaccination. But all the supports around it, including the building where we did it, how it was organized and designed, and then having specialized personnel there to help with certain situations, was supported by People Inc. and the other agencies, to make sure that we were able to have a successful clinic," Ess said.
And because Hasan receives support through and works for People Inc., that’s where he ultimately got vaccinated.
“I feel like it was easy to get the vaccine. They put my name on the list and then one once my name came up, I just went and got the vaccine," Hasan said.
Ess said that about 95% of People Inc.’s population is now vaccinated following the DDAWNY clinics and that the high vaccination rates allowed for the people they serve to return to some activities.
New York City area
In Western New York, DDAWNY agencies saw success by partnering together and with local and state offices. AHRC New York City, New York City's largest provider of services for people with disabilities, also relied on a partnership.
CEO Marco Damianisaid this led to 90% of the people who live with AHRC being vaccinated.
"Being a large organization in the state, we were quickly able to partner with a very large long-term care pharmacy. And they provided us vaccination clinics all over New York City. And we ended up vaccinating 1,000 people within our first week in that program," Damiani said.
The virus' spread impacted decisions around vaccination
As the pandemic continues, people with disabilities are at high-risk for COVID-19. Ess believes that how hard the disability community was hit by COVID-19 motivated people to get vaccinated.
As of April, Ess said 855 people are served by People Inc. in 147 group homes. Ess shared that between mid-December 2020 and the end of January 2021, they had 125 new cases and their first 10 deaths.
“So in that six-week time frame, we saw people becoming positive across the board and seeing a lot of people, unfortunately, you know, have negative experiences with COVID," Ess said.
Ess said they set up respite sites, as entire homes and staffing patterns became sick. It was difficult to keep up with how quickly it was spreading.
“We lost 10 people, which up until that point we had not. We were, up until December, we hadn't lost anyone. So that's really difficult when you see your friend die," Ess said.
This doesn't mean that people didn't still have questions or were unsure at first. For Hasan, he said that he did a lot of research before deciding to get the shot.
"It's new and I had questions about it and I had to really do my homework about it before I did it [got vaccinated for COVID-19]. I just didn't want to go into something without knowing, without knowing what it's about," Hasan said. "Now that I have it, I'm happy I have it, because I'm able to be around people that's been vaccinated."
He added that he had also researched a lot of information about COVID-19 and how it impacts people when they get sick, and that factored into his decision.
"So when it was time to get the shot, I knew that if I didn't get the shot and I get sick, I take a chance on maybe losing my life," Hasan said. "These are the chances we take if we don't get the shot. And I'm not saying that the shot is 100%, that it's gonna keep you from getting COVID, but [it will] lessen [the chance of getting it] or lessen the chances of if you get COVID, you won't get it as bad as if you didn't get the vaccine."
The future of COVID-19 vaccination
As the Delta variant surges, not only are unvaccinated people still getting vaccinated, but the CDC recommends immunocompromised people talk to their doctor about getting a third doseand boosters are coming for everyone starting in September.
Damiani said going forward, all sites need to be accessible, not just the sites organizations like his created.
“I know, at least in the abstract, I don't want to have a special vaccination clinic, I want all vaccination clinics to work. It's a lot of work to do this. It was not in our original job description to manage pandemic vaccination clinics, we did it, we did a good job with it," Damiani said. "But this is a lesson learned. And I think this is a good example of the role of government, as much as possible, to be coalescing around a common sense of purpose and responsibility. And then using the resources that organizations like ours can provide, with especially expertise, you're helping to staff some of these things for all kinds of different combinations of things to make going forward."
