Less Worthy Lives? We Must Prioritize People with Intellectual and Developmental Disabilities in COVID-19 Vaccine Allocation

Scott D. Landes, Margaret A. Turk, Katherine E. McDonald, and Maya Sabatello

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We expressed concern1 early in the COVID-19 pandemic that people with intellectual and developmental disabilities would disproportionately experience the health burdens of COVID-19 due to:

  1. higher prevalence of underlying medical conditions that can increase the severity of COVID-19 outcomes;2,3
  2. a disproportionate percentage of people with intellectual and developmental disabilities living in group home residences;4
  3. communications about COVID-19 prevention and treatment advice that is not accessible to people with disability;5,6
  4. historic and ongoing status as a vulnerable, and often marginalized, health disparities population.7,8

Unfortunately, these concerns were on target. Our first study included a large sample of people with and without intellectual and developmental disabilities who had been diagnosed with COVID-19 and confirmed a higher prevalence of underlying conditions among those with intellectual and developmental disabilities at all ages. It also indicated a higher case-fatality rate for people with intellectual and developmental disabilities at ages up to age 74.9 Our second study on group residential settings revealed that in New York State, people with intellectual and developmental disabilities living in group homes had a case rate 4 times higher, and case-fatality rate 1.9 times higher than the overall state population.10 A more recent study demonstrated that the higher case rate for those living in congregate settings (group homes and health care facilities) is likely associated with the number of residents per facility. However, the higher case-fatality rate is likely due to the higher prevalence of pre-existing conditions.11 Finally, a study in progress documents that these trends are consistent for people with intellectual and developmental disabilities across the U.S.12

Vaccination priorities reveal our values
Just distribution of vaccines requires prioritization decisions that consider medical need, social marginalization, and overall health-related harm and benefits.13 The evidence is clear that people with intellectual and developmental disabilities experience disproportionately severe COVID-19 outcomes and should be prioritized in the allocation of COVID-19 vaccines. Vaccine allocation decisions will speak volumes about whether we do—or do not—value the lives of people with intellectual and developmental disabilities. We concur with the recommendation from the National Academies of Sciences, Engineering and Medicine that people with intellectual and developmental disabilities residing in congregate settings, as well as their care staff, should receive priority in vaccination distribution.14 However, we are concerned that limiting prioritization only to those who reside in congregate settings, rather than the entire intellectual and developmental disabilities population, may be short-sighted. This vulnerable group experiences greater prevalence of pre-existing conditions that can exacerbate the severity of COVID-19. They also often need direct, not socially-distanced, support. Thus, it is imperative to prioritize all people with intellectual and developmental disabilities for timely access to the COVID-19 vaccine. Caring for those with the greatest need is a moral responsibility. Whether, and how, we prioritize people with intellectual and developmental disabilities in COVID-19 vaccine allocation will reveal the extent to which we value this group within our society.

References

  1. Landes, S.D., Stevens, J.D., & Turk, M.A. (2020, April 27). COVID-19 and pneumonia: Increased risk for individuals with intellectual and developmental disabilities during the pandemic. Syracuse University: Lerner Center for Public Health Promotion. https://lernercenter.syr.edu/2020/04/27/covid-19-and-pneumonia-increased-risk-for-individuals-with-intellectual-and-developmental-disabilities-during-the-pandemic/
  2. Landes, S.D., Stevens, J.D., & Turk, M.A. (2020). Cause of death in adults with down Syndrome in the US. Disability and Health Journal, 13(4), 1-9.
  3. Landes, S.D., Stevens, J.D., & Turk, M.A. (2020). Cause of death in adults with intellectual disability in the United States. Journal of Intellectual Disability Research, 65(1), 49-59.
  4. Braddock, D., Hemp, R., Rizzolo, M.C., Tanis, E.S., Haffer, L., & Wu, J. (2015) The state of the states in developmental disabilities: Emerging from the great recession. American Association on Intellectual and Developmental Disabilities.
  5. Sabatello, M., Blankmayer-Burke, T., McDonald, K.E., & Applebaum, P. (2020) Disability, ethics and health care in the COVID-19 pandemic. American Journal of Public Health 110(10), 1523-1527.
  6. Sabatello, M., Landes, S.D., & McDonald, K.E. (2020). People with disabilities in COVID-19: Fixing our priorities. The American Journal of Bioethics, 20(7), 187-190.
  7. Spong, C.Y., & Bianchi, D.W. (2018). Improving Public Health Requires Inclusion of Underrepresented Populations in Research. The Journal of the American Medical Association, 319(4), 337-338.
  8. Krahn, G.L., & Fox, M.H. (2014). Health disparities of adults with intellectual disabilities: What do we know? What do we do? Journal of Applied Research in Intellectual Disabilities, 27(5), 431-446.
  9. 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), 1-4.
  10. Landes, S.D., Turk, M.A., Formica, M.K., McDonald, K.E., & Stevens, J.D. (2020). COVID-19 outcomes among people with intellectual and developmental disability living in residential group homes in New York State. Disability and Health Journal, 13(4), 1-5.
  11. Landes, S.D., Turk, M.A., & Wong, A.W.W.A. (2020). COVID-19 outcomes among people with intellectual and developmental disability in California: The importance of type of residence and skilled nursing care needs [Manuscript accepted for publication – 12/2/2020]. Disability and Health Journal.
  12. Landes, S.D., Turk, M.A., & Ervin, D.A. (2020). Case-fatality rates for people with intellectual and develomental disabilities in 11 US states [Unpublished manuscript].
  13. Williams, J.H., & Dawson, A. (2020). Prioritising access to pandemic influenza vaccine: A review of the ethics literature. BMC Medical Ethics, 21(1), 40.
  14. National Academies of Sciences, Engineering, and Medicine. (2020). Framework for equitable allocation of COVID-19 vaccine. The National Academies Press.

Acknowledgments
Scott D. Landes is an affiliate of the Center for Aging and Policy Studies, which receives funding from the National Institute on Aging (grant # 1P30AG066583). Landes also receives funding from the National Institute on Aging (grant # 1R03AG065638). Margaret A. Turk receives funding from CDC/NCBDDD (1U19DD001218). Katherine E. McDonald receives funding from NIDILRR (grants # 90DP0026 and 90DPAD001). Maya Sabatello receives funding from NHGRI/NIH’s Office of the Director (OD) (grant # R01HG010868). The authors thank Shannon Monnat and Megan Ray for edits on an earlier version of this brief.

About the Author
Scott D. Landes (sdlandes@syr.edu) is an Associate Professor of Sociology in the Maxwell School at Syracuse University and Faculty Associate at the Aging Studies Center. Margaret A. Turk is a Distinguished Service Professor of Physical Medicine & Rehabilitations, Pediatrics, and Public Health & Preventive Medicine, State University of New York Upstate Medical University. Katherine E. McDonald is a Professor of Public Health, and Acting Associate Dean of Research, Falk College, Syracuse University. Maya Sabatello is an Associate Professor of Medical Sciences (in Medicine) and (in Medical Humanities and Ethics), at the Department of Medicine and the Department of Medical Humanities and Ethics, Columbia University.