COVID-19 Vaccines for Children with Developmental Disabilities: Survey of New York State Parents' Willingness and Concerns.

OBJECTIVE: While 1 in 6 US children have a developmental disability (DD), and such children are disproportionately affected by COVID-19, little is known about their vaccination status. We surveyed New York State parents of children with DDs to ascertain willingness and concerns regarding COVID-19 vaccines. METHODS: An online survey was distributed to statewide DD networks from June to September 2021 (vaccines were authorized for adolescents in May 2021). We report associations between vaccine willingness and concerns and race/ethnicity, child age, in-person schooling, routine/flu vaccinations, and DD diagnoses. Willingness was categorized as "got/will get ASAP" (high), "wait and see/only if required," or "definitely not." RESULTS: A total of 352 parents (49.1% White) responded. Willingness differed by age ( p < 0.001). High willingness was reported for 73.9%, 50.0%, and 36.0% of children aged 12 to 17, 6 to 11, and 0 to 5 years, respectively. Willingness differed by autism diagnosis ( p < 0.01) and routine and flu vaccination status ( p < 0.001). Predominant concerns included side effects (89%) and children with disabilities not being in trials (80%). Less common concerns were COVID not serious enough in children to warrant vaccine (23%) and misinformation (e.g., microchips, 5G, DNA changes) (24%). Concerns about vaccine safety differed by age ( p < 0.01) and were highest for older and then the youngest children. In age-stratified adjusted models, attention-deficit/hyperactivity disorder was negatively associated with high willingness for age 5 or younger (OR = 0.02, 95% confidence interval, <0.001-0.622). CONCLUSION: Parents of children with DD in New York seemed highly willing for them to receive COVID-19 vaccines. Although few factors predicted willingness to vaccinate, addressing safety and developmental concerns regarding young children is warranted. Given their increased vulnerability, improved COVID-19 surveillance for children with DD is warranted.

Impact of the COVID-19 Pandemic on the Behavioral Health of People With Intellectual and Developmental Disabilities.

OBJECTIVE: The authors examined how the COVID-19 pandemic affected the behavioral health of people with intellectual and developmental disabilities (IDD). METHODS: A modified version of the Coronavirus Health Impact Survey-Adapted for Autism and Related Neurodevelopmental Conditions was sent to the authors' clinical networks and IDD-affiliated organizations from March to June 2021. RESULTS: In total, 437 people with IDD or their caregivers responded to the survey. Diagnoses included intellectual disability (51%) and autism spectrum disorder (48%). More than half (52%) of respondents reported worsened mental health. Losing access to services correlated with declining mental health. Interventions suggested to improve behavioral health included more time with friends and family (68%), more time outdoors (61%), and access to community activities (59%). CONCLUSIONS: COVID-19 affected the behavioral health of individuals with IDD. Survey results highlight the opportunity to leverage physical activity and pandemic-safe social supports as accessible means to mitigate gaps in services.

COVID-19 vaccine perceptions in New York State's intellectual and developmental disabilities community.

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 in five languages for the IDD community, was distributed to a convenience sample of IDD organizations throughout New York State. 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 developmental 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 to/received the vaccine were dispersed 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.