Disabled community 'left behind' in vaccine rollout one year later

Hundreds to thousands of calls come in to the Disability Information and Access Line (DIAL) each week from disabled people across the country with questions about COVID-19, vaccinations, testing spots and more.

As one of the first call centers to focus specifically on the needs of disabled people, the federally funded hotline continues to pick up speed, filling a service previously unmet, according to the line's director Sara Clark. The more people know about it, she says, the more calls they're fielding.

"It's important for people with disabilities to know that they can turn to a trusted source for accurate information," Clark said.

DIAL was created in May 2021 and serviced and supported by national disability advocacy groups.

The call center has since been inundated with requests to assist disabled people in getting vaccinated, finding vaccination sites, in-home vaccination availability, educating callers about vaccine information, and overcoming physical or systemic barriers to accessing the vaccine and booster shots.

"Now that the word about us, it's showing us that there's a lot more people that have needed this but didn't necessarily know about it," Clark said.

The CDC reports that disabled adults were more likely to endorse the vaccine as protection against COVID, but are more likely to report difficulties in getting vaccinated than did adults without a disability.

Some 82.4% of disabled people have at least one dose of the vaccine, compared to 85.3% of non-disabled adults, according to the Centers for Disease Control and Prevention. Among disabled adults over the age of 65, the gap in vaccination widens to about five percentage points.

"The disability community didn't have a national call center until DIAL was created," said Sandy Markwood, the CEO of the national disability and elderly advocacy organization USAging. "It focuses primarily on COVID but people are also calling looking for supportive services, which are needed now more than ever."

The effort was funded by the U.S. Administration for Community Living and the CDC but is being run by USAging and other disability advocacy networks such as the National Disability Rights Network, the National Association of Councils on Developmental Disabilities and more.

Some 61 million adults in the United States live with a disability, the CDC reports -- that's about 1 in 4 adults who have some type of disability.

Curt Decker, the executive director of the National Disability Rights Network, said the COVID-19 pandemic has highlighted some of the ways that ableism in policies and procedures has impacted access to healthcare and safety for disabled people.

He said that the disabled community is often "left behind" in disasters and the COVID-19 pandemic is just the latest example of this.

"You've really got to think through all the different populations, different needs and design your programs to meet that whole range of people," said Decker. "Surprise, surprise -- here comes a pandemic and we didn't initially plan how our response is going to impact these very vulnerable populations."

Disabled people have been disproportionately impacted by the COVID-19 pandemic: "the increased risk of poor outcomes from the disease itself, reduced access to routine health care and rehabilitation, and the adverse social impacts of efforts to mitigate the pandemic," the CDC reports.

The pandemic has exacerbated pre-existing oppression on the disabled community. The World Health Organization notes that disabled people are more likely to be older, poorer, and have comorbidities -- all of which increase the risk of severe consequences from the virus.

"The disability community is very diverse, with all kinds of disabilities," Decker said. "Unfortunately, we've discovered that there are some people that are just not thinking about the population and what their needs are."

Markwood says that the lack of access to reliable information and vaccination sites has hampered vaccination efforts among this demographic.

"There was a lot of misinformation about what the impact of vaccines would be on people who had disabilities," Markwood said.

For people with intellectual disabilities and for people who are immunocompromised to some degree, advocates say that the fear of vaccination, lack of understanding of medical jargon, and lack of communication from doctors on individual health impacts was greatly unaddressed.

Many of the people calling DIAL's hotline, Clark says, are just looking for information and insight.

"Maybe the initial question would be: 'where can I get vaccinated?'" Clark said. "Then, it's the 'how' of getting there, getting the transportation. In some cases, people need assistance with getting into the appointment, waiting there, knowing what to expect next, and the peer support that our Centers for Independent Living offer."

Then come the issue of physically accessing the vaccine.

"If a person is using a wheelchair, will they be able to get to the vaccination site?" Clark said. "If it's a person who has sensory issues, they might get overwhelmed with a lot of people or a lot of noises or a situation they're not used to."

She added, "If they're trying to get into a spot that you know, wasn't wheelchair accessible or they they're a person who needs American Sign Language, but they're not able to communicate with people there -- they could also call us. We've trained and prepare people for that."

Some people with disabilities live in group homes or detention facilities, some cannot verbally communicate, some need transportation or communication assistance, Decker and Markwood said.

Some people are homebound or are under the guardianship of someone who may be against vaccines, they added.

Many factors create hostile or challenging scenarios for the vaccination rollout among disabled patients: if vaccination spots are difficult to travel to or navigate; if at-home vaccine administration is hard to come across; if a care provider or guardian is not adequately relaying accurate information or if medical information is not being understood or if websites and call centers are not disability-friendly.

"We actually went into a group home in one state where the residents wanted to be vaccinated, and the provider wouldn't do it -- so we had to get a mobile unit out there from the local health department could give them access to the vaccine," Decker said.

CDC states that reducing these barriers to vaccine scheduling and making vaccination sites more accessible "might improve vaccination rates among persons with disabilities."

The CDC has started acting on this by funding the Administration on Community Living's efforts to connect with the aging and disabled -- which includes backing DIAL.

Considering the ever-increasing demand for DIAL's services, there is still a clear need for resources to address the needs that are holding disabled people back from vaccination access.

"[Call center users] are so happy that there's someone to answer the phone because so often they call places and it's just an automated message," Clark said. "They are really just happy and grateful that there is someone at the other end of the line that can listen to them and hear their needs and not only hear their needs, but also point them in the right direction."