People with mental and developmental disabilities – such as Down syndrome, cerebral palsy, and autism – faced significant educational, employment, and mental and physical health hurdles during the pandemic.
Despite little research on the group of approximately 6.5 million Americans, these individuals are known to be at significantly higher risk of hospitalizations and coronavirus-related deaths. However, they were largely absent from vaccination priority lists in many states.
To combat what experts believe is a public health issue, the National Association of Developmental Disorders Councils last week launched a website that directs people with IDD to trusted COVID-19 vaccine resources, especially where they can be found can find one in their region.
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Those behind Get Out The Vaccine said the community is dealing with transportation issues, internet access issues, and general issues with preventive measures like social distancing and wearing masks – all factors that can keep them from getting a vaccine appointment to get.
But Emmanuel Jenkins, who has cerebral palsy, says he won’t let these challenges get in the way.
“If cerebral palsy won’t get me out of it,” he said, “I refuse to let a pandemic or virus do the same.”
Donna Meltzer, CEO of NACDD, said her goal is to ensure that people with disabilities “can lead full lives again”.
“Because of this pandemic, so many people have been isolated from their friends, families, co-workers and their community,” 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.”
There is no national database that records how many people with IDD are vaccinated against COVID-19. However, some states have their own censuses and are taking steps to ensure that this population is given priority access while supply remains limited.
For example, Maryland and Ohio have put people with developmental disabilities in their priority lists for phase 1b vaccines, Illinois has put people with disabilities in phase 1b, and Nevada and Washington have put the same group in phase 1c, according to the Kaiser Family Foundation.
However, the terminology used in government vaccination schedules has resulted in some people experiencing attention deficit disorder, hearing loss, seizures, stuttering, or other developmental delays resulting from early vaccination guidelines. Most states say that priority should be given to people with “high-risk conditions”, but the category may not include all people with IDD.
Many, if not all, states have prioritized adults living in long-term care facilities as recommended by the Centers for Disease Control and Prevention, however not all people with IDD live in nursing homes.
The vague criteria for vaccination “are based in part on persistent inattention to this population in research studies,” wrote four medical professionals in a comment published in The Lancet in February. “In particular, national population health data for people with IDD are incomplete and strategies to improve vaccination rates for people with IDD are not well understood.”
The CDC recognizes that people with disabilities are at higher risk of developing COVID-19, but the only intellectual or developmental illness it lists on its website is Down syndrome. The agency notes that “conditions will be added when there is enough scientific evidence to include them on the list. The list will be updated as new information becomes available. “
What risks do people with IDD see in diagnosing COVID-19?
CDC officials say that additional health conditions like diabetes, heart disease, or obesity – in addition to a disability – can increase the risk of developing COVID-19. One reason for this is that this group is more likely to have such pre-existing health conditions. In fact, the life expectancy of this population is nearly 20 years below that of the general public.
A study of more than 65 million patients in 547 health organizations found that people with IDD were more likely to develop COVID-19 (3%), be hospitalized (63%), admitted to an intensive care unit (15%) and dying (Aug. %) of COVID-19 compared to those infected with the virus but without IDD – 1%, 29%, 6% and 4%, respectively.
Another study of New York residents showed that the risk of death for people with IDD and COVID-19 was almost eight times higher than that of the general population.
Another paper found that people with intellectual and developmental disabilities are more likely to be infected and die from COVID-19, especially in their younger years, McClatchy News reported last June.
This group has “historically dealt with fragmented access to primary and preventive care, social and medical stigma and marginalization,” wrote medical professionals in The Lancet. “These barriers contribute to higher prevalence of co-occurring mental and physical health conditions and mortality rates, particularly among racial and ethnic minorities, women and people from low-income families.”
“Given these barriers and the resulting health disparities, we can anticipate barriers to the spread and uptake of vaccines among people with IDD,” they added.
Experts Say The Best Defense Against COVID-19 Right Now Is Vaccination; President Joe Biden announced that all Americans will be eligible to receive COVID-19 vaccines by May 1, although some states will open the eligibility earlier. However, most proponents agree that much needs to be done to ensure that people with IDD have the resources they need to access accurate information about vaccines.
The CDC has resources on COVID-19 that are easy to read, in American Sign Language, and for those with limited English language skills.
So far, as of April 1, more than 56 million people in the US have been fully vaccinated, a CDC tracker shows – about 16.9% of the population.
© 2021 McClatchy Washington Bureau
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