The COVID-19 Vaccine Experiences of People with I/DD and Direct Support Professionals

Across the country, we’re seeing signs that the situation regarding access to COVID-19 vaccines is changing dramatically. Compared to the earliest months following FDA approval of the first COVID-19 vaccines when demand for the shots far outpaced supply, there are now reports that in many states and communities, there are far more appointments available than there are people able or willing to take them. By the time of this writing, everyone in the United States 12 years of age or older has become eligible to receive the shot, ending a months-long patchwork of state systems in which only those in particular priority tiers were eligible.

This significant shift in the national COVID-19 vaccine situation led ANCOR to wonder whether the uptick in vaccine accessibility happening at the national level was also being experienced by people with intellectual and developmental disabilities (I/DD) and the direct support professionals (DSPs) who support them.

This curiosity led us to field a survey of our members in April 2021 to understand the situation regarding access to and uptake of COVID-19 vaccines within our community. In the context of the situation facing people supported by the provider organizations that responded, the questionnaire sought to assess what percentage of people supported had received at least one shot, the primary modes by which people supported were receiving vaccines, and the barriers preventing vaccination rates from being higher. The questionnaire asked similar questions about the DSPs employed by respondents’ organizations, although in this context, we asked what provider organizations were doing to support their employees’ ability to become vaccinated.

In all, the survey garnered 164 responses from provider organizations that deliver I/DD services in 25 states. Together, these organizations serve 73,840 adults and children with I/DD, with the average respondent supporting 456 families. The remainder of this article summarizes our key findings and concludes with our observations about the next chapter in our broader efforts to ensure people with I/DD and the DSPs on which they rely remain safe from the worst effects of COVID-19.