Individuals With Intellectual and Developmental Disabilities Were Excluded From COVID-19 Vaccine Priority Guidelines

Last week, my colleagues and I authored a commentary in EClinicalMedicine, a clinical journal published by the Lancet, urging the Biden administration to amend the priority guidelines for COVID-19 vaccinations to include all people with intellectual and/or developmental disabilities (I/DD; Hotez et al., 2021).

It is critical that the entire I/DD population gains access to priority vaccines. But it’s also important that we consider why they were excluded in the first place.   

People with I/DD, including individuals with attention-deficit/hyperactivity disorder, autism spectrum disorder, cerebral palsy, learning disabilities, seizures, developmental delays, and/or intellectual impairment, comprise between 1% and 2% of the U.S. population. They are particularly susceptible to COVID-19, demonstrating more severe illness, greater risk of hospitalization, and almost twice the case fatality rates for individuals ages 18 to 74 (Turk et al., 2020). People with I/DD may experience difficulties following social distancing guidelines (Embregts et al., 2020) and often require in-person services from professionals who have been noted to work multiple jobs (Contrera, 2021). Despite that, the guidelines—from which states take their cue in administering vaccines—exclude the bulk of this population. It is critical that the entire I/DD population gains access to priority vaccines. But it’s also important that we consider why they were excluded in the first place.    

Disability stigma in health care 

Stigma—negative attitudes and beliefs based on distinguishing characteristics assumed to be disadvantageous—is at least partially to blame for the exclusion of people with I/DD from the COVID-19 vaccination guidelines (Mayo Clinic Staff, 2017). My experiences as both a developmental psychologist and the sibling of an autistic adult make plain that stigma against individuals with I/DD is rampant in health care. For starters, their interests are not adequately represented in health care policy, often because their needs and abilities are misunderstood and they are assumed to be different or separate from the general population (Scior et al., 2016). They are also excluded from research recruitment efforts and eligibility criteria. Indeed, a recent review of 300 randomized clinical trials published in high-impact medical journals found that people with I/DD were represented in only 2% of trials (Feldman et al., 2014). Exacerbating this is an undercurrent of implicit stigma, which is reflected in providers’ use of negatively biased or exclusionary language.  

For example, in focus groups, pediatric providers described working with their patients with I/DD as a “minefield” and referred to them as “those kids” (Como et al., 2020). Given that individuals with I/DD are well aware of these and other forms of stigma, they often conceal their I/DD status. Thus, a vicious cycle of stigma is at the root of their exclusion from the priority guidelines (Ditchman et al., 2013): Minimal research on this population, which is reluctant to self-identify, compounded by implicit bias and misinformation among health care professionals, resulted in insufficient data on their susceptibility to COVID-19 and a consequent unwillingness to include them in the priority guidelines.  

Beyond this, stigma is directly and indirectly damaging to health. Stigma has been linked with heightened cardiovascular reactivity, exacerbated stress responses, increased substance use, and a host of other negative health outcomes (Chaudoir et al., 2013; Pascoe et al., 2009). For individuals with I/DD, experiences of discrimination and concealment of disability status contribute to poorer health, including heightened stress and anxiety (Botha & Frost, 2020; Mitter et al., 2019; Song et al., 2018; Werner & Schulman, 2013).

Further, negative attitudes about individuals with I/DD reduce the number of medical providers willing to provide those patients with care and compromise the quality of care that they receive (Agaronnik et al., 2020; Ditchman et al., 2013). When primary care doctors view patients with I/DD as too “complicated” to treat, those patients must make appointments with specialists and miss out on important preventive care (Burge et al., 2008). Concealing a disability may also disqualify individuals with I/DD from receiving supports and services (Ditchman et al., 2013). We cannot begin to improve the health and well-being of individuals with I/DD without acknowledging the powerful role of stigma.  

There are several steps we can take to address stigma against individuals with I/DD. To start, we need to better train health care professionals to work with individuals with I/DD (Pelleboer-Gunnink et al., 2017; Wilkinson et al., 2012). 

Currently, trainings exclusively focus on eliminating preexisting negative attitudes to enhance care. Effective programming must also promote neurodiversity, which conceptualizes disability as a valuable aspect of identity that does not require a cure (Kapp et al., 2013). In practice, this means that providers should utilize inclusive language that reflects patients’ diverse needs and abilities, promote health and well-being rather than single out patients’ limitations, and respond to the experiences and priorities of patients (Baida & Ivanova, 2019). 

Training medical staff is not enough, however; stigma begins in childhood, and neurodiversity education should begin well before doctors become doctors (Carter et al., 2016). The field has witnessed the emergence of children’s programming, such as Realabilities, a television show that emphasizes the strengths of children with I/DD (Silton et al., 2016). Continuing these efforts would ensure that the next generation is less subject to perpetuating stigma.  

Lastly, there is a pressing need for a corresponding neurodiversity-focused approach to research. This requires collaborating with individuals with I/DD in research that involves them. With my team at UCLA, I co-lead the Autism Intervention Research Network on Physical Health. In developing the network, we prioritized the establishment of an Autistic Researchers Review Board—composed of autistic researchers who are both scientists and lived-experience experts—to guarantee that our research meets the needs of I/DD populations. Advancing these recommendations will go a long way toward eliminating the pervasive health care stigma that resulted in people with I/DD being excluded from the priority COVID-19 vaccination guidelines.

Emily Hotez, PhD, is an assistant professor at the David Geffen School of Medicine at the University of California, Los Angeles (UCLA). Dr. Hotez is a developmental psychologist-researcher with a focus on autism, adult development, and health and well-being. She co-leads the Autism Intervention Research Network on Physical Health and can be reached at @EmilyHotezPhD.

References 

Agaronnik, N., Pendo, E., Lagu, T., DeJong, C., Perez-Caraballo, A., & Iezzoni, L. I. (2020) Ensuring the reproductive rights of women with intellectual disability. Journal of Intellectual & Developmental Disability, 45(4), 365–376. https://doi.org/10.3109/13668250.2020.1762383 

Baida, L., & Ivanova, O. (2019). Universal design in healthcare: Manual. United Nations Development Programme. https://www.ua.undp.org/content/ukraine/en/home/library/democratic_governance/universal-design-in-health-care-institutions.html  

Botha, M., & Frost, D. M. (2020) Extending the minority stress model to understand mental health problems experienced by the autistic population. Society and Mental Health, 10(1), 20–34. https://doi.org/10.1177/2156869318804297 

Burge, P., Ouellette-Kuntz, H., Isaacs, B., Lunsky, Y., & Undergraduate Medical Education in Intellectual Disabilities Group at Queen’s University (2008). Medical students’ views on training in intellectual disabilities. Canadian Family Physician, 54(4), 568–569. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2294093/

Carter, E. W., Biggs E. E., & Blustein C. L. (2016). Relationships matter: Addressing stigma among children and youth with intellectual disabilities and their peers. In K. Scior and S. Werner (Eds.), Intellectual disability and stigma (pp. 149–164). Springer. https://doi.org/10.1057/978-1-137-52499-7_10

Chaudoir, S. R., Earnshaw, V. A., & Andel, S. (2013). “Discredited” versus “discreditable”: Understanding how shared and unique stigma mechanisms affect psychological and physical health disparities. Basic and Applied Social Psychology, 35(1), 75–87. https://doi.org/10.1080/01973533.2012.746612  

Como, D. H., Floríndez, L. I., Tran, C. F., Cermak, S. A., & Stein Duker, L. I. (2020). Examining unconscious bias embedded in provider language regarding children with autism. Nursing & Health Sciences, 22(2), 197–204. https://doi.org/10.1111/nhs.12617 

Contrera, J. (2021, January 13). People with disabilities desperately need the vaccine. But states disagree on when they’ll get it. Washington Post. Retrieved January 14, 2021, from https://www.washingtonpost.com/dc-md-va/2021/01/13/disabled-coronavirus-vaccine-states/

Ditchman, N., Werner, S., Kosyluk, K., Jones, N., Elg, B., & Corrigan, P. W. (2013). Stigma and intellectual disability: potential application of mental illness research. Rehabilitation Psychology, 58(2), 206–216. https://doi.org/10.1037/a0032466  

Embregts, P. J., van den Bogaard, K. J., Frielink, N., Voermans, M. A., Thalen, M., & Jahoda, A. (2020). A thematic analysis into the experiences of people with a mild intellectual disability during the COVID-19 lockdown period. International Journal of Developmental Disabilities, 1-5. https://doi.org/10.1080/20473869.2020.1827214

Feldman, M. A., Bosett, J., Collet, C., & Burnham-Riosa, P. (2014). Where are persons with intellectual disabilities in medical research? A survey of published clinical trials. Journal of Intellectual Disability Research, 58(9), 800–809. https://doi.org/10.1111/jir.12091 

Hotez, E., Hotez, P. J., Rosenau, K. A., & Kuo, A. A. (2021). Commentary: Prioritizing COVID-19 vaccinations for individuals with intellectual and developmental disabilities. EClinicalMedicine. Advance online publication. https://doi.org/10.1016/j.eclinm.2021.100749  

Kapp, S. K., Gillespie-Lynch, K., Sherman, L. E., & Hutman, T. (2013). Deficit, difference, or both? Autism and neurodiversity. Developmental Psychology, 49(1), 59–71. https://doi.org/10.1037/a0028353  

Mayo Clinic Staff. (2017, May 24). Mental health: Overcoming the stigma of mental illness. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/mental-illness/in-depth/mental-health/art-20046477 

Mitter, N., Ali, A., & Scior, K. (2019). Stigma experienced by families of individuals with intellectual disabilities and autism: A systematic review. Research in Developmental Disabilities, 89, 10–21. https://doi.org/10.1016/j.ridd.2019.03.001  

Pascoe, E. A., & Smart Richman, L. (2009). Perceived discrimination and health: A meta-analytic review. Psychological Bulletin, 135(4), 531–554. https://doi.org/10.1037/a0016059 

Pelleboer-Gunnink, H. A., Van Oorsouw, W., Van Weeghel, J., & Embregts, P. (2017). Mainstream health professionals’ stigmatising attitudes towards people with intellectual disabilities: A systematic review. Journal of Intellectual Disability Research, 61(5), 411–434. https://doi.org/10.1111/jir.12353 

Scior, K., Hamid, A., Hastings, R., Werner, S., Belton, C., Laniyan, A., & Patel, M. (2016). Consigned to the margins: A call for global action to challenge intellectual disability stigma. The Lancet Global Health, 4(5), E294–E295. https://doi.org/10.1016/S2214-109X(16)00060-7  

Song, J., Mailick, M. R., & Greenberg, J. S. (2018). Health of parents of individuals with developmental disorders or mental health problems: Impacts of stigma. Social Science & Medicine, 217, 152–158. https://doi.org/10.1016/j.socscimed.2018.09.044 

Silton, N. R., Arucevic, S., Ruchlin, R., & Norkus, V. (2016) Realabilities: The development of a research-based children’s television program to address disability awareness and a stop-bullying platform in the schools. In Special and gifted education: Concepts, methodologies, tools, and applications (pp. 448–469). IGI Global. https://doi.org/10.4018/978-1-4666-5792-2.ch015

Turk, M. A., Landes, S. D., Formica, M. K., & Goss, K. D. (2020). Intellectual and developmental disability and COVID-19 case-fatality trends: TriNetX analysis. Disability and Health Journal, 13(3), Article 100942. https://doi.org/10.1016/j.dhjo.2020.100942  

Werner, S., & Shulman, C. (2013). Subjective well-being among family caregivers of individuals with developmental disabilities: The role of affiliate stigma and psychosocial moderating variables. Research in Developmental Disabilities, 34(11), 4103–4114. https://doi.org/10.1016/j.ridd.2013.08.029  

Wilkinson, J., Dreyfus, D., Cerreto, M., & Bokhour, B. (2012). “Sometimes I feel overwhelmed”: Educational needs of family physicians caring for people with intellectual disability. Intellectual and Developmental Disabilities, 50(3), 243–250. https://doi.org/10.1352/1934-9556-50.3.243