Improving Vaccine Confidence for People with Intellectual and Developmental Disabilities

Date: June 17, 2021
Time to read: 5 minutes.

People with intellectual and developmental disabilities (I/DD) have historically experienced health and social inequities that are compounded by the COVID-19 pandemic.[1] COVID-19 risk factors like diabetes or chronic lung or heart disease are more common for people with I/DD, resulting in more than a two-fold increase in hospitalizations (63% versus 29%), need for intensive care (15% versus 8%) and death (8% versus 4%) when compared to people without I/DD.[2],[3]

Given these risk factors, the American Association on Health and Disability conducted a rapid online survey to understand how people with disability, including people with I/DD, perceive the distribution and administration of COVID-19 vaccines. Out of the 4,131 survey respondents, 27% indicated uncertainty or unwillingness to take the vaccine. Respondents noted several reasons for their lack of vaccine confidence including limited trust that the vaccine is safe and effective, concern about how the vaccine will impact existing disabilities and conditions in the short and long term, and overall lack of accessibility to information and vaccine sites.[4]

Through partnerships, health plans have supported people with I/DD to increase vaccine confidence and access needed services in their local communities by:

  1. Using person-centered practices to inform decision-making. Health plans can support person-centered practices by hosting member/family webinars to provide education or by partnering with community organizations to offer information and decision-making support. For example, UnitedHealthcare partnered with the National Association of Councils on Developmental Disabilities to launch the GetOutTheVaccine website, which shares information and helps people and their families manage anxieties associated with the limited and misunderstood information related to the COVID-19 vaccine. The website includes guidance on vaccine accessibility and reflects the thoughts of people with I/DD, their families and friends, and their direct support professionals. A “share your shot” feature enables people with I/DD and their families to celebrate vaccine confidence by posting vaccine photos and tagging #GOTVaccine. 
  2. Driving action through data. Some health plans are using data dashboards to guide vaccine outreach and education. Using the dashboards to identify people with I/DD who have chronic conditions or risk factors can help health plans target outreach to those most in need. 
  3. Supporting a “no wrong door” approach to outreach, education, and administration. A “no wrong door” approach is a coordinated system of community-based organizations working together to ensure a seamless and person-friendly experience. Health plans have access to a broad array of community partners to support vaccine outreach and access. One health plan used their partnerships with county area agencies on aging, local health systems, and housing providers such as adult living facilities, residential care facilities, and adult family homes to educate individuals and secure vaccine appointments. Another health plan worked with organizations specializing in I/DD and national organizations such as the National Hispanic Council on Aging and the Black Coalition against COVID-19 to reach people with greater vulnerability and less vaccine confidence. 
  4. Mitigating accessibility barriers. A few health plans have focused on improving health literacy through clarity in messaging, the use of multiple formats (e.g. plain language, large print, Braille) and languages (including American Sign Language), and modification of vaccine sites by offering transportation and parking proximity. Some plans find that mass vaccination sites are more difficult for members to access and are hosting smaller vaccination clinics or providing support to local pop-up clinic sites to overcome these accessibility barriers.  One health plan used online patient education materials to enhance the readability and accessibility of vaccination education print materials while another provided access to interpreter services.

Additionally, the U.S. Department of Health and Human Services (HHS) recently launched the Disability Information and Access Line (DIAL) hotline to help people with disability find vaccination locations in their communities, assist callers with making vaccination appointments, and connect callers to local services to overcome barriers to vaccination. The hotline can also provide information and resources to answer questions and address concerns about the vaccines and connect individuals with disability to information and services that promote independent living and address fundamental needs, such as food, housing, and transportation.  

To optimally support beneficiaries with barriers to vaccine access, CMS announced an opportunity for providers to receive enhanced payment for at-home vaccination.  This enhanced payment supports both the administration costs as well as the clinical time needed to monitor post-vaccination outcomes.

For more information on health plan strategies to promote collaboration, target outreach to people most at risk through data, and employ effective outreach to increase vaccine confidence, view previous RIC blog posts on Strategies For Health Plans To Support Access To COVID-19 Vaccines For Vulnerable PopulationsExpanding Language Access To COVID-19 Vaccination Materials, and Engaging Family And Friend Caregivers In COVID-19 Vaccination Efforts.

[1] Krahn, G. L., Walker, D. K., & Correa-De-Araujo, R. (2015). Persons with disabilities as an unrecognized health disparity population. American journal of public health, 105 Suppl 2(Suppl 2), S198–S206. https://doi.org/10.2105/AJPH.2014.302182.

[2] Centers for Disease Control and Prevention. (2021). COVID-19: People with Certain Medical Conditions. Retrieved from https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html.

[3] Gleason, J., Ross, W., Fossi, A., Blonsky, H., Tobias, J., & Stephens, M. (2021). The devastating impact of Covid-19 on individuals with intellectual disabilities in the United States. NEJM Catalyst Innovations in Care Delivery, 2(2).  

[4] Drum, C.E. & Ditsch, J. (2021). COVID-19 Vaccine & Disability Survey: Vaccine Hesitancy Among Adults with Disabilities. Rockville, MD: American Association on Health and Disability. Retrieved from https://aahd.us/wp-content/uploads/2021/04/COVID-19VaccineandDisabilitySurvey.pdf.

Topic Areas:
Resource: