With access to COVID-19 vaccines varying dramatically for people with developmental disabilities, advocates want the Centers for Disease Control and Prevention to update its prioritization plan to account for the high risk this population faces.

In a letter to CDC leadership late last month, 16 advocacy groups called for people with developmental disabilities who are living independently in the community or with family to be added to group 1B in the CDC’s recommendations for the vaccine rollout.

The agency has so far prioritized residents of long-term care facilities in group 1A, the first to get vaccinated, which in many states includes people with developmental disabilities living in congregate settings. But, the CDC has made no mention of those with similar diagnoses who live outside of group settings. Such a disparity is problematic, advocates say, given that research has shown that people with developmental disabilities are far more likely to die from COVID-19 than others.

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“Individuals with IDD are at significantly higher risk compared to the general population, regardless of their living situation,” reads the letter spearheaded by the American Academy of Developmental Medicine and Dentistry, a group for health professionals who provide clinical care to people with developmental disabilities. “We believe that at-risk individuals with IDD must be prioritized explicitly along with other high-risk diagnoses.”

Other groups that signed the letter include the American Association on Intellectual and Developmental Disabilities, the Autism Society of America, the National Association of Councils on Developmental Disabilities, the National Down Syndrome Congress, the National Down Syndrome Society and the American Network of Community Options and Resources, or ANCOR.

Decisions about COVID-19 vaccine access are being made at the state level, but many states are following the CDC’s recommendations. As a result, a patchwork of approaches has emerged across the country meaning that whether individuals with developmental disabilities have access to COVID-19 vaccines depends largely on what state — or even which county — they call home.

At present, just 32 state plans account for this population in some manner, according to ANCOR, which represents disability service providers across the nation. But what that means in practice is inconsistent.

“Currently, there is significant variability in how individuals with IDD are prioritized in vaccine allocation frameworks. We ask that the Centers for Disease Control and Prevention provide a centralized framework for vaccine allocation with clear guidelines regarding risk that includes adults with IDD,” the advocates wrote in their letter.

The CDC did not respond to a request for comment on the matter.