People with intellectual and developmental disabilities have been mostly absent from vaccination priority lists.
People with intellectual and developmental disabilities — such as Down syndrome, cerebral palsy and autism — have faced significant hurdles during the pandemic involving education, employment and mental and physical health.
Despite little research on the group comprising about 6.5 million Americans, it’s well known these individuals face significantly higher risks of coronavirus-related hospitalization and death — yet they have been mostly absent from many states’ vaccination priority lists.
To combat what experts deem a public health concern, the National Association of Councils on Developmental Disabilities launched a website to help guide people with IDD to trusted resources on COVID-19 vaccines, particularly where to find one in their area.
Those behind “Get Out The Vaccine” said the community is dealing with transportation issues, internet access problems and general struggles with following preventive measures such as social distancing and mask wearing — all factors that can keep them from getting a vaccine appointment.
But Emmanuel Jenkins, who has cerebral palsy, says he won’t let those challenges stand in the way.
“If cerebral palsy is not going to take me out,” he said, “I refuse to let a pandemic, or a virus do the same.”
Donna Meltzer, CEO of NACDD, said her goal is to make sure people with disabilities can “get back to living their fullest lives.”
“So many people have been isolated from their friends, families, coworkers and their community because of this pandemic,” Meltzer said in a statement. “We want our community to understand the benefits of the vaccine and feel empowered to make the decision to get vaccinated on their own.”
There is no national database that tracks how many people with IDD are getting vaccinated against COVID-19, but some states have their own counts and are taking steps to ensure this population receives priority access while supplies remain limited.
For example, Maryland and Ohio included people with developmental disabilities in its Phase 1b vaccine priority list, Illinois included people with disabilities in its Phase 1b, and Nevada and Washington included the same group in its Phase 1c, according to the Kaiser Family Foundation.
Still, the terminology used within state vaccination plans has left some people with attention-deficit disorders, hearing loss, seizures, stuttering or other developmental delays out from early vaccination guidelines. Most states say people with “high risk medical conditions” should be prioritized, but the category may not include all people with IDD.
Many, if not all, states also prioritized adults living in long-term care facilities, per Centers for Disease Control and Prevention recommendations, however not all people with IDD live in nursing homes.
The vague criteria for vaccination “stems, in part, from a continued inattention to this population in research studies,” four medical professionals wrote in commentary published February in the Lancet. “Specifically, national population health data for individuals with IDD is incomplete and strategies to improve vaccination rates in individuals with IDD are under-explored.”
The CDC acknowledges that people with disabilities are at higher risk of getting COVID-19, but the only intellectual or developmental condition it lists on its website is Down syndrome. The agency notes “conditions are added when there is enough scientific evidence to support putting them on the list. The list is updated as new information becomes available.”
What risks do people with IDD face when diagnosed with COVID-19?
CDC officials say additional health conditions such as diabetes, heart disease or obesity — on top of a disability — can raise risks of getting COVID-19. Part of the reason being that this group is more likely to have such pre-existing health conditions. In fact, life expectancy for this population is nearly 20 years below that of the general public.
A study of more than 65 million patients across 547 health care organizations found that people with IDD were more likely to get COVID-19 (3 percent), be hospitalized (63 percent), be admitted to an intensive care unit (15 percent) and die (8 percent) from COVID-19 compared to those infected with the virus but without IDD — 1 percent, 29 percent, 6 percent and 4 percent, respectively.
Another study of New York residents showed that risk of death for people with IDD and COVID-19 was nearly eight times higher than that of the general population.
Yet another paper found that people with intellectual and developmental disabilities were more likely to become infected by and die from COVID-19, especially at younger ages, McClatchy News reported in June.
This group has “historically grappled with fragmented access to primary and preventive care, social and medical stigma, and marginalization,” medical professionals wrote in the Lancet. “These barriers contribute to higher prevalence of co-occurring mental and physical health conditions and rates of mortality, particularly for racial and ethnic minorities, women, and individuals from low-income families.”
“Given these barriers and resulting health disparities, we can anticipate hurdles for vaccine dissemination and uptake among individuals with IDD,” they added.
Experts say the best defense against COVID-19 right now is vaccination; President Joe Biden announced all Americans will be eligible to get COVID-19 vaccines by May 1, although some states are opening up eligibility earlier. However, most advocates agree there’s much to be done to ensure people with IDD have the resources they need to access accurate information about vaccines.
So far, more than 56 million people have been fully vaccinated in the U.S. as of April 1, a CDC tracker shows — about 16.9 percent of the population.