When Sherri Collins traveled to the State Farm Stadium in Glendale in February to get her first dose of the COVID-19 vaccine, she was surprised there were no American Sign Language interpreters available.
Collins, who is Deaf, said she made an appointment online and that there was no place to request accommodations beforehand. She had to rely on her husband, who is hard of hearing, to interpret the conversation, an experience she described as “stressful,” especially given that the vaccination site workers did not know how to interact with her.
“He had to make them repeat (themselves),” she said. “So he had to tell me, ‘This is what they’re asking.’ I think about eight to 10 people kept coming to our car, talking to us, and I had no idea. If it wasn’t for my husband, I would’ve been like, ‘I have no clue what you’re saying to me.’”
Since the beginning of the pandemic, Collins, who is the executive director of the Arizona Commission for the Deaf and Hard of Hearing, has faced challenges as a person and advocate for her community. Mask-wearing has been one of the biggest, she said. Collins, a 57-year-old from Goodyear, relies on lip-reading, which was inhibited by opaque masks.
“The one nice thing about the beginning of the pandemic is that we were able to procure 25,000 clear masks, so we shared them with the public,” she said. Collins remembers offering one to her doctor, who wore it to communicate with her at an appointment.
Collins is one of 1.1 million Arizonans with a hearing impairment. This group is part of the broader Arizona community of individuals with disabilities — sensory, physical and developmental — a group that advocates say has been overlooked in the vaccine distribution process.
In March, when the state opened vaccinations to anyone age 16 and older, many people in the disability community felt that they were left behind and made to compete with millions of others for few vaccination slots, even though many are at higher risk of contracting the coronavirus because of multiple medical conditions.
Now, as the pandemic enters a new phase, with the highly contagious delta variant of the coronavirus spreading, the disability community in Arizona still faces disproportionate barriers to getting vaccinated. But thanks to the hard work of advocates and health officials — and events focused on vaccinating the disability community —getting vaccinated has become easier.
At the beginning, too few accommodations, advocates say
Erica McFadden is the executive director of the Arizona Developmental Disabilities Planning Council, which is affiliated with the Governor’s Office and advocates for people with disabilities.
McFadden said that when they first opened, state-run vaccination clinics did not provide adequate accommodations for people with disabilities, which Collins said she experienced firsthand when she went to get vaccinated at State Farm Stadium in February.
“We’ve been asking for accommodations since the beginning, when they started administering the vaccines in December or January,” McFadden said. “We were asking for accommodations, and took a while to even be able to show that there was a need for it and for them to understand what it meant. It took months. I think the focus was so much on getting the vaccine out there that the ADA part was not a priority.”
April Reed, the vice president of advocacy at Ability360, a nonprofit organization that provides services for people with disabilities, said she heard several complaints.
People were “asking for materials in alternative formats and being told that that wouldn’t be provided or going on a website to book an appointment, but they weren’t able to reserve a sign language interpreter,” she said.
Reed said some people recalled calling vaccination sites to check if they were wheelchair-accessible and weren’t given a clear answer. “They were afraid to go because they knew that they needed that,” she said. “It was not uncommon for me to talk to somebody that had been trying for weeks and weeks and months to find a site that could provide accommodations.”
A state spokesperson said accommodations were made.
“State vaccine sites provided accommodation for people with disabilities and complied with the Americans with Disabilities Act,” Steve Elliott, a spokesperson from the Arizona Department of Health Services, said in a statement. “When staff were told of a patient’s need for accommodation, they had procedures in place to assist them.”
Per the Americans with Disabilities Act, a federal law prohibiting discrimination based on disability status, vaccination sites must provide accommodations for people with disabilities. “These obligations include providing reasonable accommodations and auxiliary aids and services (such as sign language interpreters, video remote interpreting, Braille),” according to the Arizona Center for Disability Law.
J.J. Rico, chief executive officer of the center, said that his organization was motivated to create a blog post outlining accessibility and accommodation resources after getting calls from Arizonans with disabilities and their advocates describing difficulties getting vaccinated. “So we wanted to write an article that covered the legal protections, the legal requirements under the Americans with Disabilities Act.”
Callers described facing long lines at state-run vaccination sites without adequate seating, in addition to inaccessible models, such as drive-thru vaccination sites that were incompatible with public transportation or paratransit services that many people with disabilities use, according to Rico.
He added that when the state of Arizona first began its vaccine rollout, “there really wasn’t even a box (on the website) or some place you could call if you needed a reasonable accommodation … whether that be that they needed a place to sit or a sign language interpreter.”
Rico, who is a lawyer, said that under Title II and Title III of the Americans with Disabilities Act, both public and private vaccination sites — including businesses and community-run vaccination sites — must provide “reasonable accommodations” upon request. For a hearing-impaired individual, this could include an ASL interpreter “if that person’s primary language is American Sign Language,” he said, emphasizing that there are many different sign languages, systems and dialects, including Signed English, which is distinct from ASL.
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Even if it is difficult to physically bring an interpreter to the site, modern technology, such as video calling, has made it easier to offer a diversity of interpreters remotely, Rico explained.
“Reasonableness is determined not just by money, but also looks at the size of the location,” he said. “State-run vaccination sites have a lot more resources, whereas a small location that’s being hosted by a small community-run organization may not necessarily have the resources or the utilities to schedule and contact an interpreter.”
The Arizona Department of Health Services said in a statement to The Arizona Republic that it offered several accommodations for people with disabilities at state-run vaccination sites and mobile vaccination clinics contracted by the state. They included screen readers for visually impaired people, specifically designated appointments for people with disabilities, wheelchair assistance and golf-cart transportation to and from parking lots, and drive-thru services for patients who arrived on public transportation, Elliott, the AZDHS spokesperson, said.
“All sites were accessible to those with mobility issues,” Elliott said. “At the drive-thru State Farm Stadium site, for example, those administering shots had procedures for staff to administer shots in vans if needed.”
Vaccination events and other solutions
In April and May, Ability360 spearheaded two vaccination events targeting the Phoenix-area disability community. It enlisted a coalition of other disability advocacy groups, including the Arizona Center for Disability Law, Arizona Developmental Disabilities Planning Council and Arizona Commission for the Deaf and Hard of Hearing. The Arizona Department of Health Safety was also a co-sponsor of the events.
The clinics, which were held at Ability360’s Phoenix location, offered first and second doses to individuals with disabilities as well as their families and caregivers. The events were appointment-only, offered ADA reasonable accommodations upon request and drew close to 2,000 people, according to Reed and McFadden.
Reed said her group was prompted to organize the events after hearing from Arizonans with disabilities, some of whom were denied accommodations elsewhere. “It was really important to them that they’d be able to come to a place where it was familiar, and that they felt safe and that they knew that there would be accommodations provided.”
In April, the Arizona Center for the Blind and Visually Impaired held a vaccination event for people with visual impairments, but drew only about 20 people.
In the two months since the Ability360 events, McFadden said disability advocacy groups have been focused on encouraging other vaccination sites to become more accessible. “We’re trying to show how to give vaccines correctly, how to provide accommodations, how to have interpreters there, how to have things in large print, how to have stress balls for people who might have anxiety issues. So we try to model that for other sites.”
Rico explained that the Arizona Center for Disability Law hopes to show both public and private vaccination sites “how easy it is to provide accommodations on the spot.”
“If someone has a physical disability that doesn’t allow them to spend long periods of time standing, have an extra chair to offer for them to sit and not lose their place in line,” he said. For individuals with hearing impairments, Rico explained, interpreters are an example of an ADA reasonable accommodation.
But effective communication could also include exchanging notes.
Collins, from the Arizona Commission for the Deaf and Hard of Hearing, said her group worked with the Department of Health and the Maricopa County government to design communication cards for people with hearing and vision loss.
When they show up at a vaccination site, these individuals can fill out a card to facilitate communication between themselves and vaccination site workers. The card includes language that says “I am using this card to communicate because I have an accommodation scheduled/or need (an) on-site ASL interpreter, video remote interpreting, CART,” which is a speech-to-text interpreting service.
The card also allows the user to ask a vaccination site worker to either speak into their smartphone or write or type what they are saying, and includes a list of standard questions that people are asked before they get vaccinated — such as allergies and pregnancy status — that card users can fill out ahead of time.
“Those cards were distributed at the vaccine (sites), so that if a person was deaf or hard of hearing, they were able to give them that card to help answer their questions and give them information when they were getting their vaccine,” Collins said, referring to state- and county-run vaccination sites.
Reed said that after the Ability360 vaccination events, there has been a heightened awareness surrounding accessibility. “We’re definitely receiving less complaints from the community,” she said, but added that challenges still remain and that more people with disabilities would have been vaccinated earlier had vaccinations been more accessible from the start.
Today, it is easier for people with disabilities to get the vaccine, Reed said, thanks to months of community advocacy. “I think a lot of people at this point are able to go to their pharmacy and to their doctor’s office and other places that they’re very familiar with and where they know the staff, and so I think that’s helped a lot with access.”
The Arizona Developmental Disabilities Planning Council has put together a COVID-19 vaccination resource page for individuals with disabilities and their loved ones, in addition to assembling a checklist for vaccination sites to ensure that they are ADA-compliant.
Rico said the state’s website added a section to request accommodations while scheduling an appointment at the mass vaccination sites and distributed a fact sheet about best practices for accommodations to its vaccine task force.
The state continues to contract with 13 providers to administer mobile vaccination clinics, according to the Arizona Department of Health Services.
People with disabilities who are still looking to get a COVID-19 vaccine can use the Arizona Developmental Disabilities Planning Council’s resource page and the online vaccine navigator to receive assistance in scheduling an appointment.
Reed said that the key to a truly accessible vaccination site is a willingness to talk to people with disabilities about their concerns. “I think that one thing that was very different about our site is that people knew that they could call and they could ask questions.”
What surprised her most about the Ability360 event, she said, was the community’s outpouring of emotion and appreciation when their needs were met — something she hopes all vaccination sites will strive to achieve in the coming months.
“You can see the burden on (the community) from not having access or worrying about their loved ones getting the vaccine,” she said. “I’m hopeful that we can learn a lot from this experience as a community and this can be an opportunity to make sure that in the future, these types of events are accessible to people with disabilities from the start.”