With plans now in the works for distributing a coronavirus vaccine, there are worries that despite the high risk they face, people with developmental disabilities may not be given priority.

The ongoing COVID-19 pandemic has the whole world waiting for a vaccine, but whenever one does become available, there won’t immediately be enough of it for everyone all at once. As a result, government officials are working to establish a pecking order.

Earlier this month, a committee from the National Academies of Sciences, Engineering and Medicine issued a preliminary framework outlining how a COVID-19 vaccine might be allocated. The committee formed at the request of the National Institutes of Health and the Centers for Disease Control and Prevention is expected to issue a final report this fall, which is intended to help inform federal decision-making on a vaccine.

The draft document included a four-phase plan for how to hand out a vaccine. Front-line health care workers would be prioritized as well as older adults living in congregate settings and people with high-risk conditions.

The proposal has disability advocates alarmed, however, because it contains no mention of when people with developmental disabilities could access a COVID-19 vaccine.

“The fact that people with disabilities were not explicitly named, it’s disappointment, frustration, exasperation,” said Shannon McCracken, vice president for government relations at the American Network of Community Options and Resources, or ANCOR, a national trade group representing disability service providers.

There are provisions for individuals living in group homes who would be in phase two. But, advocates say the plan overlooks people with developmental disabilities living in the community and in other types of congregate settings like nursing homes, developmental disability centers and psychiatric facilities unless they happen to have other high risk conditions too. These individuals wouldn’t qualify for a vaccine until phases three or four, stages when it would be broadly available to children and young adults.

The draft also includes conflicting information about when group home staff would be eligible for a vaccine and it lacks details about direct support professionals working in other settings, advocates said.

Research has shown that people with developmental disabilities are at significantly higher risk of dying from COVID-19 than others.

“I do think that the failure to include people with intellectual disabilities was an oversight that could cause serious harm,” said Sam Crane, legal director at the Autistic Self Advocacy Network. “This is especially true of people with intellectual disabilities living in institutional settings, who seem not to be addressed anywhere, and also people with disabilities in community-based settings who receive in-person supports and therefore cannot isolate.”

Crane’s group along with ANCOR, the National Association of State Directors of Developmental Disabilities Services, the American Academy of Developmental Medicine & Dentistry and others scrambled to respond to the National Academies of Sciences, Engineering and Medicine’s draft during a four-day comment period in early September, calling for the expert panel to recommend vaccine access for people with intellectual and developmental disabilities in earlier phases.

In addition, a task force from the Consortium for Citizens with Disabilities — a coalition representing dozens of disability advocacy groups — wrote to the Office for Civil Rights at the U.S. Department of Health and Human Services this week to push that office to ensure that any vaccine allocation plan provides equal access for people with disabilities in accordance with federal civil rights laws.

Advocates said they are also reaching out to lawmakers asking them to make sure that people with developmental disabilities are not left behind.

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