The COVID Vaccine: Where Do People with Disabilities Stand?

When the encouraging news broke that Moderna and Pfizer have both produced efficient COVID-19 vaccines, the conversation immediately turned to who will receive them first. Earlier this month, CDC Director Robert Redfield approved a recommendation that priority be given to health care workers and residents of long-term care facilities. This has disability advocates worried, as people with developmental disabilities are not among the list of prioritized individuals (unless they live in a long-term care facility), and are more likely to die from COVID-19 complications than their neurotypical peers. 

Several clear bottles with a blue cap are lined up. The bottles have a white label that reads COVID-19 Coronavirus Vaccine in blue letters.

States are not required to follow the CDC guidelines for distributing vaccines, but they are expected to. California’s Department of Public Health (CDPH) released allocation guidelines for the first phase of vaccine rollouts on December 5, which align with the CDC’s recommendations. 

These recommendations include a long list of prioritization subcategories that depend on the available vaccine doses, but the take-home is that if there are not enough vaccines in the first round of distribution, the prioritized populations will be divided into three main tiers. 
Tier 1 includes:

  • Health care workers at hospitals and dialysis centers
  • Emergency medical providers (such as EMTs)
  • Health care workers in skilled nursing, assisted living, and similar facilities for elderly or medically vulnerable patients, and residents of those facilities

Tier 2 includes: 

  • Health care workers at primary care clinics and intermediate care facilities
  • Providers of home health and in-home supportive services (IHSS)
  • Community health workers and public health field staff

Tier 3 includes providers at specialty clinics, dental clinics, pharmacies, and laboratories. 

This shows that while providers of home health and IHSS are included in Tier 2, recipients of home health and IHSS are not. 

Disability advocates are highly concerned that these proposals have not adequately prioritized people with developmental disabilities. A data review of private health insurance claims for 467,773 people diagnosed with COVID-19 between April and August found that individuals with developmental disorders are three times more likely to die of COVID-19 complications than others. A separate category for people with intellectual disabilities and related conditions like Down syndrome showed a risk of death that is 2.75 higher than others. This aligns with other studies that have looked specifically at people with developmental disabilities during the pandemic. 

Shannon McCracken, vice president for government relations at the American Network of Community Options and Resources (ANCOR), said that because of this, people with developmental disabilities should be “explicitly included in the top priority tier.” ANCOR is calling on all state governments to classify people with intellectual and developmental disabilities living in any type of congregate setting as residing in a long-term care facility for the purpose of getting the COVID-19 vaccine. They also want direct support professionals to be considered health care workers. 

Nicole Jorwic, senior director of public policy at The Arc, notes that the current recommendations likely would “not include people with disabilities living in group homes, supported living, or in their own homes receiving services.” Jorwic also raised the concern that direct support professionals who assist people with disabilities with home- and community-based services are also not among the top priority recipients; these workers often work in multiple homes, which increases the risk of spreading the virus. 

“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 said.

Join ANCOR’s Twitter campaign by tweeting Governor Gavin Newsom. We’ll keep you updated in the meantime as more information becomes available.

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