Steps to Develop a Disability Advocacy Response to Vaccine Roll-Out Plans

family photo of Stephanie Meredith and her husband and 3 children
Stephanie Meredith is the author and co-author of multiple resources for new and expectant parents who receive a diagnosis of Down syndrome or other genetic disabilities. Ms. Meredith leads the Center for Dignity’s Prenatal Diagnosis Subcommittee. Ms. Meredith shares her advocacy letter to Georgia state leadership as an example for other advocates who would like to ensure people with intellectual and developmental disabilities have equitable access to vaccines.
  • Assess your state’s vaccine plan to find out what phase would include people with developmental or intellectual disabilities. If your state doesn’t specifically identify ID/DD, they would likely be included in the population described as “individuals under 65 with particularly high risk or high-risk comorbidities and health conditions.
    Clarify with your state which category covers people with ID/DD and their caregivers (family members, direct support professionals, group home staff, and nursing home/assisted living staff) under their definitions. Ideally, we want to advocate for people with ID/DD and their caregivers in the same home to be vaccinated in the phase immediately following first responders, with the other highest risk groups.
  • Determine if your state needs to better clarify group homes and other congregate facilities that serve people with ID/DD as long-term care facilities. Ideally, we want to make sure that the staff at group homes and other facilities that serve people with ID/DD are included in the first responder phase. In addition, we want to make sure that people with ID/DD who live in those settings are treated as long-term care facility residents.
  • Advocate for your state to provide a plan that accommodates
    for “reasonable modifications
    to ‘drive-up only’ sites or other testing facilities, such as establishing mobile vaccination programs or providing no-cost transportation, to ensure that vaccinations are accessible to people with developmental disabilities whose family members do not drive or who reside in settings that do not provide transportation. Additionally, the vaccine protocol and accompanying information must
    be accessible to people with developmental disabilities in plain language, in screenreader accessible formats, and in alternative formats needed by people with developmental disabilities, including graphic format that is understandable by people who may not be able to read, and in non-English languages spoken in the US.
  • Point to a politically similar state that has similarly modified its guidelines. Current examples include Oregon, Texas, Ohio, and Tennessee.
  • Recruit collaborators:
  • Develop a plan to spread the word about your advocacy efforts, concerns, and proposal:
    1. Write a press release and contact local media. Compile 3-5 stories to share. Here’s an example of a media story.
    2. Host an email, phone, and social media contact to contact your governor, lawmakers, and state department of public health.

Helpful Resources

CDC Revised guidelines
AADMD Statement
New York Times article on vaccines
Risk Factors Among Privately Insured Patients: A Fair Health White Paper

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