COVID-19 Vaccine Perceptions in New York State’s Intellectual and Developmental Disabilities Community

Abstract

Background: People with intellectual and developmental disabilities (IDD) are at disproportionate risk for severe COVID 19 outcomes, particularly those living in congregate care settings. Yet, there is limited data on vaccine perceptions in the disability community. Objective: To explore COVID 19 vaccine perceptions in individuals with IDD, their family members, and those who work with them, to inform a statewide vaccine information and messaging project. Methods: A national survey, adapted for the IDD community, was distributed to a convenience sample of IDD organizations throughout New York State, in five languages. Constructs included vaccine intention, reasons for vaccine hesitancy, and trusted sources of vaccine information. Zip code data were used to map respondent location and vaccine preferences. Results: Of n= 825 respondents, approximately 75% intended to or had received the vaccine, across roles (i.e., people with disabilities, family members, direct care workers) and racial/ethnic groups. Greater vaccine hesitancy was reported in younger individuals and those making decisions on behalf of a person with IDD. Concerns included side effects and the swiftness of vaccine development. Black and Hispanic participants had heightened concerns about being an experiment for the vaccine. Trusted sources of information included healthcare providers and family members. Respondents who intended/got the vaccine were distributed throughout the state. Conclusions: Vaccine preferences in this New York State disability community sample align with national data. Identified concerns suggest the need for community education that addresses misperceptions. Age and race differences in perspectives highlight the need for tailored education, delivered by trusted messengers.

COVID-19 vaccination hesitancy among Americans with disabilities aged 18-65: An exploratory analysis

“…Studies including disability have largely been narrow in geographic scope (i.e. New York state 13 ) or based on medical diagnoses as an indicator of disability (i.e. multiple sclerosis 14 ).…”

The willingness of UK adults with intellectual disabilities to take COVID‐19 vaccines

“…We could find only one study with any data from people with ID themselves. In a survey of family carers, paid staff, and people with intellectual and developmental disabilities in New York State, USA, Iadarola et al (2021) reported data on vaccine willingness from 91 people with disabilities (including people with ID). 'Vaccine intent' was defined as definitely or probably being willing to have the vaccine and included a small number of people who had already had a vaccine, with 83.5% reporting positive vaccine intent.…”

COVID-19 vaccination intentions amongst care-professionals in the field of intellectual disability: a scoping review

“…A total of 26 papers were selected and analysed, focusing on the socio-demographical predictors of vaccine willingness and the attitudes that inspire vaccine hesitancy in healthcare workers. Only two papers were found that focussed on healthcare workers working with individuals with intellectual disabilities (Iadarola et al, 2021;Lunsky et al, 2021). Vaccine willingness percentages were comparable between the respondents of these two papers and within the subgroups of these papers.…”

“…In the two papers that describe vaccine hesitancy in healthcare workers that care for people with intellectual disabilities (Iadarola et al, 2021;Lunsky et al, 2021), the main socio-demographical predictor of willingness was age, with younger people being more hesitant for vaccination. Other sociodemographical characteristics like profession, gender, ethnicity, education and geographical location were not statistically significant predictors of vaccine willingness.…”

“…In both papers, healthcare workers showed a comparable percentage of vaccination intention; 76% and 82%. Iadarola et al (2021) 8 focused not only on healthcare workers who care for people with intellectual disabilities, but also individuals diagnosed with intellectual disabilities and family members of people with intellectual disabilities (e.g., individuals who spend time with people with intellectual disabilities and make decisions for them). Vaccine intentions did not significantly vary across these three groups.…”