ABSTRACT:
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.
Index terms: COVID-19, vaccines, children, survey, willingness
SARS-CoV-2 (COVID-19) poses a heightened risk for individuals with intellectual and/or developmental disabilities (DD). “DD” includes disorders that begin in childhood; affect physical, social, and/or emotional development; and may affect multiple body parts or systems. They span conditions such as autism spectrum disorder, cerebral palsy, Down syndrome, hearing loss, and attention-deficit/hyperactivity disorder (ADHD). COVID-specific disparities in outcome vary within intellectual and developmental disabilities (IDD); intellectual disability (ID) is associated with higher infection and case-fatality rates in adults,1,2 while DDs more generally increase the likelihood of hospitalization associated with COVID-19. For example, people with comorbid autism and ID were 9.3 times more likely to be hospitalized than people with COVID-19 without those diagnoses, while those with learning disabilities and autism (alone) were 3.8 and 3.6 times, respectively, more likely to be hospitalized than people without those diagnoses.3 Furthermore, adults with disabilities are more likely to want—but less likely to receive—a COVID-19 vaccine, than their nondisabled peers, in part because of inaccessible systems.4
Approximately 1 in 6 children in the United States has a developmental disability.5 Children with DD are disproportionately affected by COVID because of medical conditions that increase risk of severe illness, difficulty practicing preventive behaviors (e.g., mask-wearing, social distancing), and limited access to accessible vaccine settings.6 Amid the pandemic, children with DDs have experienced worsening anxiety, ADHD, and autism symptoms,7,8 along with increased medication usage.9 Given that children comprise 22% of the US population,10 vaccine uptake in children is critical to protecting themselves and the community at large.11 Although general (i.e., non–COVID-19) childhood vaccination rates in the United States have slowly increased in the past decade, current vaccination rates are impeded by COVID-19's impact on health care access and an ecosystem of generalized vaccine hesitancy.12 Before the pandemic, children with ID were less likely to have completed recommended vaccinations,13,14 as were children with autism (and their younger siblings).14 Furthermore, even compared with parents of children with other chronic health or developmental conditions, parents of children with autism express more vaccine concerns.15
Pre-existing concern regarding approved vaccines also influence intention toward COVID-19 vaccines for children. Surveys from 2020 found that 60% to 70% of US parents expressed willingness for their child to receive a COVID-19 vaccine.16,17 However, in an early 2021 survey of US parents, just 40% were willing to vaccinate. Willingness increased with child age, while unwillingness was linked to concerns about the vaccine being too new, side effects, and lasting health problems.18 Among parents with children 12 years and younger, just 49% in a national sample would vaccinate their youngest child (median age = 4.7 years). Not having a child in school/daycare and living in the South or Midwest was associated with increased hesitance.19 In this same survey with New York City parents, 62% would vaccinate their youngest child.20 After the May 2021 emergency use authorization (EUA) of a vaccine for 12- to 15-year-olds in the United States,21 the Kaiser Family Foundation's (KFF) Vaccine Monitor found increasing uptake and acceptance of vaccines for children. In September 2021, 52% of 12- to 17-year-olds had received the vaccine or would as soon as possible (ASAP) vs. 42% in both May and June 2021. Just 34% of parents of 5-11 year-olds, and 23% of parents of children younger than 5 years of age expressed willingness to vaccinate their child.22 Finally, a representative sample of US parents from June 2021 found Black and Hispanic parents less willing to immediately vaccinate, while those with older children were more willing.23
Children become infected with, get sick from, and transmit COVID-1924; their rates of infection exceeded those of adults for the first time in August 2021.25 Since the 2021–22 school year began, 1 in 4 children had to quarantine because of possible school-related exposures.22 School closures, undertaken to reduce COVID-19 spread, adversely affect children's health and well-being.26 Furthermore, although children with DDs are disproportionately affected by COVID-19, relatively little is known about parents'/caregivers' willingness and concerns regarding COVID-19 vaccines for their children. Thus, we conducted an online survey of parents of children with DDs in New York State (NYS) during Summer-Fall 2021 to identify (1) willingness to vaccinate by demographic (i.e., diagnosis) and related risk factors (i.e., routine vaccination status), (2) vaccine-related concerns by child age, and (3) associations between risk factors and high willingness to vaccinate, stratified by child age.
METHODS
Survey Development
This survey was adapted from a prior study of COVID-19 vaccine perceptions and intentions among adults with IDD, their caregivers, and professionals who work with them.27 For this parent/caregiver survey, many items were drawn directly from the above survey instrument, which included many from the Kaiser Family Foundation (KFF) surveys.28 Additional items geared to parents/caregivers were informed by the literature and “Engage & Educate,” a statewide campaign to promote vaccines among persons with DDs in New York State (NYS). These items included school/child care placement, preferred location for vaccination, and child-specific concerns about COVID-19 vaccines (e.g., effects on child development, fertility, interaction with required childhood vaccines). Data were analyzed by 3 age groups: (1) 12 to 17 years, i.e., adolescents, for whom there were emergency use authorizations (EUAs) at the time of the survey; (2) 6 to 11 years, i.e., school-age, who were the next age group up for EUA review; and (3) 5 years and younger, i.e., young children. After review by stakeholders, including parents, self-advocates, and disability service providers, the survey was translated into the following languages of the Engage & Educate project's community partners: Bengali, Chinese, Korean, and Spanish. This project received a determination of “Non-Research” from the institutional review boards at both sites.
Survey Distribution
The survey was built into Research Electronic Data Capture, a user-friendly, Health Insurance Portability and Accountability Act (HIPAA)-compliant data capture system. In addition to the above languages, the survey was translated into American Sign Language (ASL). For the ASL version, all instructions and survey items were video recorded in ASL and then attached to each individual question. An electronic link with a plain language description of the survey in all languages was posted through national, statewide, and regional networks and social media channels from June 3 to September 21, 2021. The 3 University Centers of Excellence in Developmental Disabilities in NYS also disseminated the survey to their networks, which included local health departments, service providers, Special Olympics New York, school districts, and a 150-member consortium of congregate care providers. Organizations serving persons with IDD who are Hispanic/Latino, Chinese, Korean, and South Asian also distributed the survey. Within NYS, the survey was shared using listservs and social media pages specific to parents of children with disabilities (e.g., parent advisory groups, parent leadership cohorts, special education parent-teacher associations).
Survey Items
Demographics and Placement Preferences
Individuals self-selected into the survey by indicating that they were a “caregiver who makes medical decisions for a child (under age 18) with a developmental disability” and were asked to complete the survey regarding one such index child. Participants reported on basic demographic information about their children including age band (i.e., 12–17 years, 6–11, 5 or younger), diagnoses provided, child hearing status, race and ethnicity, whether the child is up to date for current vaccines (including flu vaccine), and state of residence. Both (1) current school/child care placement and (2) preferred school/child care placement modality for fall were assessed with the following options: School: “100% in-person,” “100% remote” or “hybrid,” or; Child Care: “own home by someone else,” “other's home,” “center-based,” or; “homeschooled.”
Vaccine Willingness
Willingness to receive the COVID-19 vaccine was assessed with the following KFF item (additional instructions from the current survey italicized): “For your child aged [12–17, 6–11, 5 or younger]: How likely would you be to get the COVID-19 vaccine if it were offered for free?” Response options included the following: “already got (shown only for children aged 12–17),” “will get as soon as possible,” “wait and see,” “only if required,” and “definitely not.” We combined the first 2 responses into a “got/get ASAP” (i.e., “highly willing”) category. The next 2 categories were combined into a “waiting/if required” (i.e., “not yet willing”) category. Respondents who fell within either the final “do not intend” or “waiting/if required” category were shown an additional set of questions related to concerns about the vaccines.
Vaccine Concerns
Those who did not report high intention around the vaccine were asked to rate potential reasons for concern as a “big reason,” “little reason,” or “not a reason.” Concerns were grouped into overarching themes: general COVID concerns and specific child/family concerns about the vaccine, age-related concerns (for children aged 5 and younger only, including that the child is too young and the child is already getting too many vaccines at their age), and general concerns about vaccines. An open-ended prompt asked parents to describe other reasons for concern.
Preferred Vaccine Location
Parents were asked to rank order where they would prefer their child to be vaccinated for COVID-19, including office of pediatrician or family doctor, public vaccination site, grocery store, child's school, mobile vaccine unit, drive-through site, in-home service, and faith institution.
Analysis
Descriptive analysis was performed on parent and child demographics and COVID-19 vaccine–related items. Mean and SD were presented for the continuous variables, while count and percentage were presented for the categorical variables. Between-group difference was tested by using Student's t test or χ2 test. To examine the association between willingness to get vaccinated and potential risk factors, willingness was dichotomized into “got/get ASAP” and “else.” A logistic regression model was used with “got/get ASAP” as the dependent variable and race/ethnicity, school plan, flu vaccine status, and comorbidities as independent variables, stratified by age groups. As actual and planned EUA status varied across the 3 age groups, we expected that risk factor effects would also vary by age, so multivariate logistic regression models were run, stratified by age group. All analyses were performed by using SAS 9.4 (SAS Institute Inc, Cary, NC).
RESULTS
Demographics and Willingness to Vaccinate
This diverse sample of 352 included parents of Asian (18.6%), Black/African-American (9.3%), and Hispanic/Latina(o) (16.5%) descent, 56.5% of whose index child was younger than 12 years. Autism was the predominant diagnosis (62.2%), followed by attention-deficit/hyperactive disorder (ADHD)/learning (30.1%) and developmental delay (25.3%) (Table 1). Although New York State (NYS) announced in May 2021 that its schools would open for in-person learning in Fall 2021,29 24% of parents were not planning for their child to attend school in-person in September. Most children's routine vaccinations were up to date (94.0%), but only 70.5% of age-eligible children had received a flu shot in the last year. The top ranked vaccination settings, which varied by age, were doctor's office, other (p < 0.001), and home (p.01).
Table 1.
Demographics and Willingness to Vaccinate
| N (%) | Got/Get ASAP | Wait/If Required | Definitely Not | |
| Overall | 352 | 202 (57%) | 97 (28%) | 53 (15%) |
| Race/ethnicity (parent):** | ||||
| Asian | 62 (18.6%) | 40 (64.5%) | 20 (32.3%) | 2 (3.2%) |
| Black/African-American | 31 (9.3%) | 13 (41.9%) | 9 (29.0%) | 9 (29.0%) |
| Hispanic/Latino(a) | 55 (16.5%) | 23 (41.8%) | 21 (38.2%) | 11 (20.0%) |
| White | 164 (49.1%) | 109 (66.5%) | 38 (23.2%) | 17 (10.4%) |
| Other | 22 (6.6%) | 12 (54.5%) | 6 (27.3%) | 4 (18.2%) |
| Language of survey: | ||||
| English | 308 (87.5%) | 177 (57.5%) | 80 (26.0%) | 51 (16.6%) |
| Korean | 34 (9.7%) | 21 (61.8%) | 11 (32.4%) | 2 (5.9%) |
| Other | 10 (2.8%) | 4 (40.0%) | 6 (60.0%) | 0 (0.0%) |
| Preferred vaccine site (#1): | ||||
| Doctor's office | 252 (71.6%) | 140 (55.6%) | 77 (30.6%) | 35 (13.9%) |
| Other*** | 60 (17.0%) | 21 (35.0%) | 17 (28.3%) | 22 (36.7%) |
| Home** | 54 (15.3%) | 24 (44.4%) | 14 (25.9%) | 16 (29.6%) |
| Child age*** | ||||
| 0–5 yr | 75 (21.3%) | 27 (36.0%) | 26 (34.7%) | 22 (29.3%) |
| 6–11 yr | 124 (35.2%) | 62 (50.0%) | 50 (40.3%) | 12 (9.7%) |
| 12–17 yr | 153 (43.5%) | 113 (73.9%) | 21 (13.7%) | 19 (12.4%) |
| School plans: | ||||
| Current: in-person | 215 (61.1%) | 128 (59.5%) | 55 (25.6%) | 32 (14.9%) |
| Current: Other | 137 (38.9%) | 74 (54.0%) | 42 (30.7%) | 21 (15.3%) |
| Fall: in-person | 269 (76.4%) | 154 (57.2%) | 76 (28.3%) | 39 (14.5%) |
| Fall: Other | 83 (23.6%) | 48 (57.8%) | 21 (25.3%) | 14 (16.9%) |
| Routine vaccines current:*** | ||||
| Yes | 331 (94.0%) | 195 (58.9%) | 92 (27.8%) | 44 (13.3%) |
| No | 21 (6.0%) | 7 (33.3%) | 5 (23.8%) | 9 (42.9%) |
| Flu vaccine past 12 mo:*** | ||||
| Yes | 248 (70.5%) | 158 (63.7%) | 67 (27.0%) | 23 (9.3%) |
| No | 104 (29.5%) | 44 (42.3%) | 30 (28.8%) | 30 (28.8%) |
| Diagnosis: not mutually exclusive:a | |||||
| Autism* | Yes | 219 (62.2%) | 124 (56.6%) | 53 (24.2%) | 42 (19.2%) |
| No | 133 (37.8%) | 78 (58.6%) | 44 (33.1%) | 11 (8.3%) | |
| ADHD/learning | Yes | 106 (30.1%) | 65 (61.3%) | 26 (24.5%) | 15 (14.2%) |
| No | 246 (69.9%) | 137 (55.7%) | 71 (28.9%) | 38 (15.4%) | |
| Developmental delay | Yes | 89 (25.3%) | 55 (61.8%) | 23 (25.8%) | 11 (12.4%) |
| No | 263 (74.7%) | 147 (55.9%) | 74 (28.1%) | 42 (16.0%) | |
| Intellectual disability | Yes | 61 (17.3%) | 41 (67.2%) | 13 (21.3%) | 7 (11.5%) |
| No | 291 (82.7%) | 161 (55.3%) | 84 (28.9%) | 46 (15.8%) | |
| Blindness + hearing + others | Yes | 99 (28.1%) | 57 (57.6%) | 24 (24.2%) | 18 (18.2%) |
| No | 253 (71.9%) | 145 (57.3%) | 73 (28.9%) | 35 (13.8%) | |
Differences in “willingness”: *p < 0.05, **p < 0.01, ***p < 0.001.
Differences in “willingness” between children with (yes) diagnosis vs. without (no).
Willingness to vaccinate differed by race/ethnicity (p < 0.01). White and Asian parents were highly willing to vaccinate their child (66.5% and 64.5%, respectively), while 29.0% of Black/African-American and 20.0% of Hispanic/Latino(a) parents did not intend to. Willingness also differed by child age (p < 0.001). High willingness was reported by parents of 73.9% of adolescents, 50.0% of school-age children, and 36.0% of young children. Autism was the only diagnosis associated with willingness to vaccinate (p < 0.01). Parents of children with autism (vs. without autism) were more than twice as likely to “definitely not” want their child vaccinated (19.2% vs. 8.3%). Routine and flu vaccination status were both associated with willingness to vaccinate (p < 0.001); school plans and preferred vaccination site were not.
Concerns About Getting Vaccine
Among parents who were not highly willing to vaccinate their child (n = 150), the most frequently reported “big reasons” for concern were side effects (88.7%), noninclusion of children with disabilities in clinical trials (80.0%), vaccine being too new and wanting to see effect on others (75.2%), effect on child's development (68.0%), and not wanting child to be used as an experiment (66.7%) (Table 2). Concerns related to getting COVID from the vaccine (18.8%), the low rate of serious COVID illness in children (22.8%), vaccines containing microchips/5G/changing DNA (24.2%), and needle anxiety (30.9%) were less common. Among parents of children aged 0 to 5 years, 100% indicated that their child was too young for the vaccine.
Table 2.
Concerns About Getting Vaccine: Total Sample and by Age
| Overall | N (%) | 0–5 | 6–11 | 12–17 |
| N = 150 | N = 48 | N = 62 | N = 40 | |
| COVID concerns | ||||
| Side effects | 133 (88.7%) | 45 (33.8%) | 55 (41.4%) | 33 (24.8%) |
| COVID vaccine not safe* | 72 (48.0%) | 27 (37.5%) | 21 (29.2%) | 24 (33.3%) |
| Children with disabilities not in trials | 120 (80.0%) | 43 (35.8%) | 46 (38.3%) | 31 (25.8%) |
| Too new, want to see effect on others | 112 (75.2%) | 37 (33.0%) | 46 (41.1%) | 29 (25.9%) |
| COVID not serious enough in children to need vaccine | 34 (22.8%) | 9 (26.5%) | 13 (38.2%) | 12 (35.3%) |
| Vaccine might contain microchip, 5G, change DNA | 36 (24.2%) | 14 (38.9%) | 10 (27.8%) | 12 (33.3%) |
| Will not decide until trials in this age group | 67 (60.9%) | 31 (46.3%) | 36 (53.7%) | N/A |
| Vaccine concerns | ||||
| Do not trust vaccines in general** | 35 (23.5%) | 14 (40.0%) | 6 (17.1%) | 15 (42.9%) |
| Do not trust health care system** | 32 (21.6%) | 11 (34.4%) | 6 (18.8%) | 15 (46.9%) |
| Specific child/family concerns | ||||
| Effects on child's development | 102 (68.0%) | 37 (36.3%) | 40 (39.2%) | 25 (24.5%) |
| Effects on fertility | 60 (40.3%) | 20 (33.3%) | 26 (43.3%) | 14 (23.3%) |
| Child might get COVID from vaccine | 28 (18.8%) | 9 (32.1%) | 11 (39.3%) | 8 (28.6%) |
| Do not want child used as “experiment” | 100 (66.7%) | 38 (38.0%) | 36 (36.0%) | 26 (26.0%) |
| Religious or cultural reasons | 18 (12.1%) | 6 (33.3%) | 5 (27.8%) | 7 (38.9%) |
| Needle anxiety | 46 (30.9%) | 17 (37.0%) | 17 (37.0%) | 12 (26.1%) |
| Vaccine site will not support child's needs | 47 (31.5%) | 17 (36.2%) | 19 (40.4%) | 11 (23.4%) |
| My child is too young for this vaccine | 37 (77.1%) | 37 (100%) | N/A | N/A |
| Child is getting too many vaccines now | 14 (29.8%) | 14 (100%) | N/A | N/A |
Age differences: *p < 0.05, **p < 0.01.
There were few significant age-related differences across the 16 listed concerns (18 concerns for 0- to 5-year-olds). These included concerns about the vaccine's safety (p < 0.05), which was highest for children aged 0 to 5 years (37.5%) compared with 6- to 11-year-olds (29.2%) or 12- to 17-year-olds (33.3%). Lack of trust in vaccines generally (p < 0.01) and in the health care system (p < 0.01) was higher for the young children and adolescents, although sample sizes were small. A minority of parents (n = 19) offered additional reasons for concerns. These included lack of FDA approval/emergency use authorization (EUA) (n = 1), cardiac/myocarditis (n = 2), metals in vaccine (n = 2), and do not trust pharmaceutical companies/no liability (n = 2).
Predictors of “Got/Will Get ASAP” Vaccine
In adjusted models, compared with White parents, the odds of high willingness to vaccinate 0- to 5-year-old children were lower for Black (odds ratio [OR] = 0.06; 96% confidence interval [CI], 0.01–0.50) and Hispanic (OR = 0.12; 95% CI, 0.01–1.09) parents. A diagnosis of ADHD was negatively associated with high willingness for age 5 or younger (OR = 0.02, 95% CI, <0.001–0.622) (Table 3). Among parents of 6- to 11-year-olds, reduced odds of being highly willing were reported by Hispanic (vs. White) parents (OR = 0.23; 95% CI, 0.06–0.90). There were no significant predictors in model for 12- to 17-year-olds related to demographic factors; however, the odds of high willingness to vaccinate were greatest among those whose children who had a flu vaccine in the past 12 months (OR = 5.84; 95% CI, 2.43–14.03).
Table 3.
Predictors of “Got/Get ASAP” Vaccine for Child
| 0–5 Years | 6–11 Years | 12–17 Years | |||||||
| Level | Odds Ratio | Lower 95% CI | Upper 95% CI | Odds Ratio | Lower 95% CI | Upper 95% CI | Odds Ratio | Lower 95% CI | Upper 95% CI |
| Race (vs White) | |||||||||
| Asian | 0.16 | 0.02 | 1.34 | 0.94 | 0.30 | 2.98 | 1.39 | 0.34 | 5.59 |
| Black | 0.06** | 0.01 | 0.50 | 1.10 | 0.20 | 6.13 | 1.06 | 0.17 | 6.47 |
| Hispanic | 0.12* | 0.02 | 0.72 | 0.23* | 0.06 | 0.90 | 0.60 | 0.19 | 1.95 |
| Others | 0.09 | 0.01 | 1.09 | 0.79 | 0.16 | 3.84 | 1.98 | 0.33 | 12.07 |
| Current schooling | |||||||||
| Any in-person (vs. none) | 0.94 | 0.24 | 3.57 | 2.03 | 0.70 | 5.94 | 0.997 | 0.39 | 2.58 |
| Fall school plan | |||||||||
| Any in-person (vs. none) | 0.78 | 0.14 | 4.34 | 0.54 | 0.17 | 1.72 | 1.09 | 0.35 | 3.40 |
| Flu vaccine, recent | |||||||||
| Got vaccine (vs. not) | 5.13 | 0.72 | 36.48 | 2.24 | 0.88 | 5.75 | 5.84*** | 2.43 | 14.03 |
| Diagnosis (vs. no) | |||||||||
| Autism | 2.97 | 0.59 | 14.80 | 2.18 | 0.88 | 5.40 | 0.98 | 0.36 | 2.64 |
| ADHD | 0.02* | <0.001 | 0.62 | 1.51 | 0.67 | 3.42 | 0.60 | 0.23 | 1.61 |
| Developmental delay | 2.90 | 0.60 | 14.12 | 0.81 | 0.31 | 2.12 | 1.51 | 0.44 | 5.13 |
| Intellectual disability | 5.22 | 0.49 | 55.61 | 1.50 | 0.49 | 4.65 | 1.26 | 0.36 | 4.50 |
| Vision/hearing/other | 0.25 | 0.04 | 1.66 | 1.66 | 0.59 | 4.64 | 0.48 | 0.17 | 1.40 |
*p < 0.05, **p < 0.01, ***p < 0.001. ADHD, attention deficit/hyperactive disorder; ASAP, as soon as possible; CI, confidence interval.
DISCUSSION
This article reports on novel data from more than 350 parents of children with developmental disabilities (DDs) in New York State (NYS) regarding COVID-19 vaccines. Compared with the general population, parents of children with DD seemed more willing to vaccinate their children (for context, study data were collected after vaccine emergency use authorization (EUA) for 12- to 15-year-olds in May 2021—which expanded the December 2020 EUA for 16-year-olds and older—and before the October 2021 EUA for 6- to 11-year-olds21). Parents of 73.9% of 12- to 17-year-olds got or would get as soon as possible (ASAP) the vaccine for their child with a DD versus 52% in the September 2021 Kaiser Family Foundation (KFF) Vaccine Monitor. Similarly, willingness to get the vaccine ASAP was higher for school-age children in our study than in the KFF survey (50% vs. 34%) and in the youngest children (36% vs. 23%).22 Furthermore, as of mid-December 2021, 19% of 5- to 11-year-olds and 62% of 12- to 17-year-olds in the United States had received at least 1 vaccine dose.30 These proportions are lower than our “get/get ASAP” study data from several months earlier at these same ages.
To be sure, findings from this NYS sample may not be generalizable to the United States given prepandemic demographic differences and state-specific COVID-19 parameters such as infection, morbidity, and vaccination rates. For example, 49% of the United States parents in a prior survey intended to vaccinate their youngest child—mean age of 5 years19—compared with 62% of New York City parents using the same survey.20 In addition, as of March 2022, more 5- to 11-year-olds in NYS had received an initial vaccine dose compared with the national average for this age group (42% vs. 33%), as had more 12- to 17-year-olds (82% vs. 67%).31 Similarly, at the time of our study, NYS's overall vaccination rates (children and adults) were approximately 8% above the national average.30 Potential geographic confounding and lack of DD-specific surveillance data thus limit comparisons with the general (vs. DD-specific) population.
To meet this demand, the top ranked vaccination settings were doctor's offices, followed by public sites and schools. This ordering parallels NYS's roll out, which prioritized doctor's offices and community pharmacies. Unlike health care settings that care for children with IDD, not all community sites and schools have IDD-trained staff and behavioral supports needed to provide positive vaccine experience for children with IDD (e.g., visual schedules, social stories, and sensory distraction materials). Efforts are also needed to increase access to health care visits (e.g., flexible scheduling, transportation assistance) and to emphasize that COVID-19 vaccinations should not be delayed until their child's next well-child visit. In addition, vaccine outreach and education must be tailored to the DD population's concerns about side effects, noninclusion of children with disabilities in vaccine trials, and effects on their development. Notably, these DD-specific concerns overlap with those identified for adults with DD, such as representation of persons with DD in vaccine trials and not wanting to be “used as experiment.”27 These findings underscore broader issues about the lack of inclusion of persons with DDs in disease surveillance and research. Finally, outreach to families of color is needed to address perceptions of a health care system that has often been difficult to access, not met their needs, and oftentimes failed to deliver respectful care.
Fewer children with autism and other DDs are current with their recommended vaccinations,13–15 largely because of long debunked myths.15 Not surprisingly, study participants not intending to vaccinate their child (albeit just 15% of the sample) were 3 times as likely to report their child was not up to date with routine vaccinations or the flu shot. Findings by specific diagnosis were nuanced. Unadjusted for age or other factors, higher willingness was comparable across diagnoses, although relatively more parents of children with (vs. without) autism did not intend to vaccinate their child. This finding suggests that just a subset of parents of children with autism had strong preferences against vaccination. The only significant finding for diagnosis in age-stratified multivariate models was attention deficit/hyperactivity disorder (ADHD)'s association with lower odds of young children getting the vaccine. Thus, parents' decisions about COVID-19 vaccines for their children with DDs are multifactorial and may not mirror prior data about vaccines and diagnosis.
Regarding race/ethnicity, a higher overall percentage of Black and Hispanic parents were not willing to vaccinate their child. Similarly, some people of color in the United States were initially more vaccine-hesitant—although gaps with White non-Hispanics have largely narrowed.30 There is valid and historical mistrust in the health care system among communities of color in this country, which likely affected initial hesitance. In response, culturally and linguistically competent outreach and education sought to target mistrust and likely reduced hesitance. In contrast to our findings presented in Table 1, in age-stratified models, there were no significant differences in “high willingness” by any race/ethnicity for adolescents and only lower odds for Hispanic (vs. White) for school-age children. By contrast, White parents of young children were significantly more likely to get the vaccine ASAP than all other race/ethnic groups. These finding suggest that parents of color are balancing health care system mistrust and concerns about the vaccine with short-term and long-term concerns about their child's health and the COVID-19 vaccine's potential for families to get back to or maintain their routines.
To the best of our knowledge, this is the first such parent/caregiver data in the DD population, thus filling a gap in knowledge for this vulnerable population. We note that national data track COVID-19 vaccination rates only for adults (i.e., 18 years and older) by functional disability (i.e., mobility, cognitive) but not for children with disability or for children or adults with developmental disabilities.30 Another strength is the sample's race/ethnic and linguistic diversity, including nearly half persons of color and 12.5% who completed the survey in a language other than English. In addition, inclusion of vetted items, such as the KFF Vaccine Monitor classifications for willingness to vaccinate, enables comparisons. A limitation related to use of KFF items is that it may have been unclear to parents of children younger than 12 years that the free vaccine for their child would only be offered after appropriate safety data and an EUA were obtained. Another limitation is the convenience sample, which may bias toward families connected to the DD networks from which we recruited. In addition, as noted above, findings may not be representative of the DD community nationwide. Finally, the sample may exclude parents who were unable to access and navigate a web-linked survey.
CONCLUSION
Children with developmental disabilities (DDs) are vulnerable to both the health risks posed by COVID-19 and the pandemic's impact on developmental services, in-person schooling, and socialization opportunities. The apparently high willingness of parents of children with DDs to vaccinate their children is encouraging, although trust will need to be engendered among parents of young children of color to actualize these intentions. Additional monitoring data are needed to track COVID-19 disease, vaccine intentions, and vaccination rates in children with DD.
ACKNOWLEDGMENTS
The authors would like to thank all our language and American Sign Language community partners for assisting with survey distribution.
Footnotes
Supported by grants from the Administration on Intellectual and Developmental Disabilities, US Department of Health and Human Services: Grant # 90DD0661 (University of Rochester) and Grant # 90DDUC0035 (Einstein College of Medicine) and from the Developmental Disabilities Planning Council of New York State: Grant #: DDP01-T00021GG-1100200 (Einstein College of Medicine)
Disclosure: The authors declare no conflict of interest.
REFERENCES
- 1.Gleason J, Ross W, Fossi A, et al. The devastating impact of COVID-19 on individuals with intellectual disabilities in the United States. New Engl J Med. 2021. Available at: https://catalyst.nejm.org/doi/full/10.1056/CAT.21.0051. [Google Scholar]
- 2.Landes SD, Turk MA, Ervin DA. COVID-19 case-fatality disparities among people with intellectual and developmental disabilities: evidence from 12 U.S. jurisdictions. Disabil Health J. 2021;14:101116. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Karpur A, Vasudevan V, Shih A, et al. Brief report: impact of COVID-19 in individuals with autism spectrum disorders: analysis of a national private claims insurance database. J Autism Dev Disord. 2022;52:2350–2356. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.Ryerson AB, Rice CE, Hung MC, et al. Disparities in COVID-19 vaccination status, intent, and perceived access for noninstitutionalized adults, by disability status—national immunization survey adult COVID module, United States, may 30-June 26, 2021. MMWR Morb Mortal Wkly Rep. 2021;70:1365–1371. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 5.Zablotsky B, Black LI, Maenner MJ, et al. Prevalence and trends of developmental disabilities among children in the United States: 2009-2017. Pediatrics. 2019;144:e20190811. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6.Tinker SC, Cogswell ME, Peacock G, et al. Important considerations for COVID-19 vaccination of children with developmental disabilities. Pediatrics. 2021;148:e2021053190. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7.Valicenti-McDermott M, Rivelis E, Bernstein C, et al. Letter to the editor: the impact of the COVID-19 pandemic on the mental health of youth with developmental disabilities. J Child Adolesc Psychopharmacol. 2021;31:697–698. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8.Masi A, Mendoza Diaz A, Tully L, et al. Impact of the COVID-19 pandemic on the well-being of children with neurodevelopmental disabilities and their parents. J Paediatr Child Health. 2021;57:631–636. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9.Lee V, Albaum C, Tablon Modica P, et al. The impact of COVID-19 on the mental health and wellbeing of caregivers of autistic children and youth: a scoping review. Autism Res. 2021;14:2477–2494. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10.Annie E. Casey Foundation. Kids Count Data Center. Available at: https://datacenter.kidscount.org/data/tables/99-total-population-by-child-and-adult-populations#detailed/1/any/false/574,1729,37,871,870,573,869,36,868,867/39,40,41/416,417. Accessed April 10, 2021. [Google Scholar]
- 11.Orskov S, Nielsen BF, Fons S, et al. The COVID-19 pandemic: key considerations for the epidemic and its control. APMIS. 2021;129:408–420. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12.Olusanya OA, Bednarczyk RA, Davis RL, et al. Addressing parental vaccine hesitancy and other barriers to childhood/adolescent vaccination uptake during the coronavirus (COVID-19) pandemic. Front Immunol. 2021;12:663074. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.Emerson E, Robertson J, Baines S, et al. Vaccine coverage among children with and without intellectual disabilities in the UK: cross sectional study. BMC Public Health. 2019;19:748. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 14.Zerbo O, Modaressi S, Goddard K, et al. Vaccination patterns in children after autism spectrum disorder diagnosis and in their younger siblings. JAMA Pediatr. 2018;172:469–475. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 15.Sahni LC, Boom JA, Mire SS, et al. Vaccine hesitancy and illness perceptions: comparing parents of children with autism spectrum disorder to other parent groups. Child Health Care. 2020;49:385–402. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 16.Davis MM, Zickafoose JS, Halvorson AE, et al. Parents' Likelihood to Vaccinate Their Children and Themselves Against COVID-19. medRxiv; 2020. Available at: 10.1101/2020.11.10.20228759. Accessed August 9, 2022. [DOI] [Google Scholar]
- 17.Kelly BSB, McCormack L, et al. Predictors of willingness to get a COVID-19 vaccine in the U.S. BMC Infect Dis. 2021;21:1–7. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 18.Szilagyi PG, Shah MD, Delgado JR, et al. Parents' intentions and perceptions about COVID-19 vaccination for their children: results from a national survey. Pediatrics. 2021;148:e2021052335. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 19.Teasdale CA, Borrell LN, Kimball S, et al. Plans to vaccinate children for coronavirus disease 2019: a survey of United States parents. J Pediatr. 2021;237:292–297. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 20.Teasdale CA, Borrell LN, Shen Y, et al. Parental plans to vaccinate children for COVID-19 in New York city. Vaccine. 2021;39:5082–5086. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 21.US Food and Drug Administration. COVID-19 Vaccines: FDA COVID-19 Vaccine News and Updates. 2021. Available at: https://www.fda.gov/emergency-preparedness-and-response/coronavirus-disease-2019-covid-19/covid-19-vaccines. Accessed August 9, 2022. [Google Scholar]
- 22.Lopes LHL, Sparks G, et al. KFF COVID-19 Vaccine Monitor: Vaccination Trends Among Children and COVID-19 in Schools. Foundation KF; 2021. Available at: https://www.kff.org/coronavirus-covid-19/poll-finding/kff-covid-19-vaccine-monitor-trends-among-children-school/. Accessed August 9, 2022. [Google Scholar]
- 23.Rane MS, Robertson MM, Westmoreland DA, et al. Intention to vaccinate children against COVID-19 among vaccinated and unvaccinated U.S. Parents. JAMA Pediatr. 2022;176:201–203. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 24.Science Brief: Transmission of SARS-CoV-2 in K-12 Schools and Early Care and Education Programs. 2021. Available at: https://www.cdc.gov/coronavirus/2019-ncov/science/science-briefs/transmission_k_12_schools.html. Accessed August 9, 2022. [PubMed] [Google Scholar]
- 25.Meckler LKD. Covid cases in kids are soaring. In Tennessee, most remain unmasked and unvaccinated. In: The Washington Post21021. 2021. Available at: https://www.washingtonpost.com/education/2021/10/04/kids-covid-cases-tennessee/. Accessed October 5, 2021. [Google Scholar]
- 26.Viner RRS, Saulle R, et al. Impacts of School Closures on Physical and Mental Health of Children Andn Young People: A Systematic Review. medRxiv; 2021. Available at: https://www.medrxiv.org/content/10.1101/2021.02.10.21251526v1. Accessed August 9, 2022. [Google Scholar]
- 27.Iadarola S, Siegel JF, Gao Q, et al. COVID-19 vaccine perceptions in New York State's intellectual and developmental disabilities community. Disabil Health J. 2022;15(1). Available at: https://www.sciencedirect.com/science/article/pii/S1936657421001448?via%3Dihub. Accessed August 9, 2022. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 28.Hamel LKAMC, Brodie M. KFF COVID-19 Vaccine Monitor. 2020. Available at: https://www.kff.org/coronavirus-covid-19/report/kff-covid-19-vaccine-monitor-december-2020/. Accessed August 9, 2022. [Google Scholar]
- 29.New York State: Governor Cuomo Announces All New York State Schools to Reopen in September [press release]. Available at: https://www.governor.ny.gov/news/video-audio-governor-cuomo-announces-all-new-york-state-schools-reopen-september. Accessed August 9, 2022. [Google Scholar]
- 30.Centers for Disease Control and Prevention. COVID Data Tracker: Demographic Trends of People Receiving COVID-19 Vaccinations in the United States. Available at: https://covid.cdc.gov/covid-data-tracker/#vaccination-demographics-trends. Accessed August 9, 2022. [Google Scholar]
- 31.American Academy of Pediatrics. Children and COVID-19 Vaccination Trends: Summary of Data Publicly Reported by the Centers for Disease Control and Prevention Date: 3/2/22. 2022. [Google Scholar]