People with developmental disabilities are not being adequately prioritized in plans to distribute COVID-19 vaccines, advocates say, even though they’re more likely to die from the virus.

Centers for Disease Control and Prevention Director Robert Redfield approved a recommendation from the agency’s Advisory Committee on Immunization Practices earlier this month on how initial doses of forthcoming vaccines should be distributed. The shots are expected to be in short supply, so access will be limited.

Under the recommendations, vaccines will first go to health care workers as well as residents of long-term care facilities. The committee will meet again to determine who should be part of the next phases of the rollout.

While states are not required to follow the CDC guide for distributing COVID-19 vaccines, most are expected to. And that has disability advocates worried.

Research shows that people with developmental disabilities who contract COVID-19 face a two to 10 times greater risk of dying as compared to others. Given that, Shannon McCracken, vice president for government relations at the American Network of Community Options and Resources, or ANCOR, said people with developmental disabilities should be “explicitly included in the top priority tier.”

“We would certainly expect the message of increased mortality in people with IDD, especially those living in group settings, would resonate with public health officials at the local, state and federal level,” said McCracken whose group represents disability service providers across the nation.

Under the current CDC recommendations, some people with developmental disabilities could qualify for the first phase of vaccine distribution if they live in a long-term care facility. That’s likely to include residents of institutions.

“But, we are concerned because that would likely not include people with disabilities living in group homes, supported living or in their own homes receiving services,” said Nicole Jorwic, senior director of public policy at The Arc. “This is a big gap.”

What’s more, Jorwic flagged the lack of priority for direct support professionals assisting people with disabilities who receive home- and community-based services. These workers are low paid and often work in multiple homes, amplifying their potential to spread the virus, she said.

Now, advocates are turning their attention to states, which will have the final say in how vaccines are allocated.

“Advocates at the state level need to see the federal recommendations as a starting point and push for more coverage for all people with disabilities and the workforce in any setting to have higher priority for access to the vaccine,” Jorwic indicated.

McCracken said ANCOR has written to each of the nation’s governors, calling on them to classify people with intellectual and developmental disabilities living in any type of congregate setting — including institutions and group homes — as residing in a long-term care facility for the purpose of COVID-19 vaccine distribution. In addition, the group wants direct support professionals to be considered health care workers.

“We would hope (long-term care facilities) would apply to (Intermediate Care Facilities for Individuals with Intellectual Disability) and HCBS programs, because social distancing is virtually impossible when supporting someone in their home,” McCracken said. “No matter what the recommendations are, the states and territories do still have the authority to prioritize critical populations as they see fit.”

Read more stories like this one. Sign up for Disability Scoop's free email newsletter to get the latest developmental disability news sent straight to your inbox.