Policymakers are not prioritizing Americans with disabilities for COVID-19 vaccinations, with several states bumping them down their eligibility lists, advocates say.
People with disabilities already are at greater risk because they often have underlying health conditions, or co-morbidities, that increase their chances of becoming seriously ill from the coronavirus, said Donna Meltzer, CEO of the National Association of Councils on Developmental Disabilities.
She noted as an example that comorbidities such as being overweight or obese, heart conditions and lower lung capacity can make people with Down syndrome more vulnerable.
“This is the case for numerous other disabilities, and so while the research might not be out there, we believe that all people with disabilities are at higher risk because of higher prevalence of comorbidities,” Ms. Meltzer said.
Las Vegas resident Santa Perez, who has cerebral palsy and asthma, said she has been “petrified” to leave home since the COVID-19 pandemic started.
“I am more scared — not just for me, but for my partner and my son,” said Ms. Perez, who serves as chairperson of the Nevada Governor’s Council on Developmental Disabilities. “I worry about where they go and how many people they will encounter. I’m more paranoid of everyone. I haven’t seen my family since before Christmas because they had an outbreak at my sister’s house.
“I know if I would have gone to the hospital, they would have looked at me in a different way,” she said. “They would look at my power wheelchair, the way I speak, the amount of care I need, and redeem me as unusable, less than, unworthy of care. They would not see my value.”
About 61 million Americans are living with disabilities, the Centers for Disease Control and Prevention estimates.
Although some, including Ms. Perez, have received vaccines, advocates say people with disabilities have been bumped down the priority list for vaccination in California and a few other states.
Advocates from 13 disability organizations sent a joint letter to the California Department of Public Health last month after the state set a date of March 15 to open COVID-19 vaccination to people with disabilities.
“Time is not on our side,” the letter said. “People with high risk disabilities/conditions continue to die, remain at higher risk than people without disabilities, and are susceptible to a permanent worsening of pre-existing conditions as a result of decisions made by the CA Department of Public Health’s to delay vaccine access for high risk Californians.”
The letter said people with high-risk disabilities and medical conditions were forced to wait while vaccinations were given to veterinary staff and outdoor exercise instructors.
Disability advocates say California’s plan “fails to communicate how it will meet the needs of our communities.”
North Carolina also has pushed people with disabilities down the priority list. Meanwhile, parents in Minnesota have been unsuccessful in their pleas to give their vaccination spots to their children with Down syndrome, The Associated Press reported. Ohio and Tennessee are vaccinating people with intellectual and developmental disabilities.
About 20 states haven’t explicitly included people with disabilities on their vaccination priority lists, AP reported, citing Donna Martin, director of state partnerships and special projects at the American Network of Community Options and Resources. ANCOR is a national trade association for service providers for people with disabilities.
Those who live in congregate settings such as group homes are on the priority list, but they represent only about 10% of people with developmental disabilities, Ms. Meltzer said.
For those who are eligible for vaccines, some disability advocates expressed concern about issues with accessibility.
“We need to be very clear on where these vaccine distribution sites are, so we need to understand where they are positioned strategically throughout the city,” said Justice Shorter, a disaster protection adviser at the National Disability Rights Network. “Are they in primarily affluent areas? Or are these sites also in communities of color, low-income neighborhoods? How are they being positioned? Because that very much is going to determine the level of overall accessibility in terms of people being able to get there. Are they near public transportation routes and lines?
“Have they set up a waiver in terms of public transportation if someone is going specifically to a vaccine distribution site?” she added. “Have they set up any sort of shuttle in certain neighborhoods to get people to the vaccine distribution site? Or is there any sort of alternative or specific transportation model that has been set up in order to support people to get to these different locations?”
Ms. Shorter said it is often assumed that people with disabilities have someone who can help them get to places they need to visit. “We can’t emphasize enough the level of exclusion that comes when your entire understanding of disability is that somebody else is going to help them,” she said.
Another issue could be the accessibility of vaccine distribution sites. Ms. Shorter asked whether drive-thrus are available for people who have to use paratransit and whether shuttle buses are accessible.
A group of 13 U.S. senators sent a letter earlier this month asking officials at the Department of Justice and the Department of Health and Human Services to guarantee that each state’s vaccine distribution process complies with the Americans with Disabilities Act. The letter was a response to a report from Kaiser Health News, which revealed that nearly all of the 94 government websites with COVID-19 vaccine sign-ups or information that they checked had accessibility issues.
“We just need to get the vaccine to these folks,” said David Boyer, managing attorney for community integration at the National Disability Rights Network. “It’s lifesaving, and we’re the greatest country in the world. We should be able to figure out a way to vaccinate all of our people.”
• This article is based in part on wire service reports.