Vaccine Prioritization for People with Intellectual/Developmental Disabilities

The Arc of North Carolina has been advocating for people with intellectual/developmental disabilities (I/DD) and their families for almost 70 years. We have developed strong partnerships with local, state, and federal organizations to ensure their issues are heard and addressed.

While we recognize there are many challenges with distribution and supply of the COVID-19 vaccine, we were extremely disheartened when the North Carolina Department of Health and Human Services (NC DHHS) re-prioritized vaccination for people with I/DD from Group 2 to Group 4. This includes people with Down syndrome who are ten times more likely to die from COVID-19.

People with I/DD must be considered high priority to receive the COVID vaccine. Most people with I/DD do not reside in long-term care facilities or group homes. They live with their families or they live on their own. They often have complicated medical histories and need support in making healthy choices. We stand with our consumers and families who find themselves in Group 4 unacceptable and ask that people with I/DD be moved back to Group 2 for COVID vaccination.

The World Health Organization (WHO) and the Centers for Disease Control and Prevention (CDC) have stated that people with I/DD are at an increased risk to become infected and to die from complications of COVID-19. The COVID-19 Case and Mortality Report studied COVID-19 data from eight states. The authors found that 12.3% of people with I/DD died as a result of complications due to COVID-19 compared to 6.7% of the general public who died from complications due to COVID-19.

In addition to their families, many people with I/DD rely on paid persons to provide personal care for them in their homes and to access their community. These caregivers are increasing the exposure risk to the very people they support. They are being vaccinated as a part of Group 1 in order to be a critical support to a medically compromised person who is at the bottom of the priority list for a vaccine.

The Arc of North Carolina has significant shared knowledge and collective experience from families and individuals in the I/DD community experiencing the devastating effects of the pandemic. We are willing to work cooperatively with state leadership to help them fully understand the increased risk to people with I/DD and will work with state and federal agencies to address the needs for this community.