the author: a white woman with brown hair in a ponytail and brown eyes, wearing black shirt in front of green wall
Tracy Waller, Esq., MPH, is an attorney with the Maryland Center for Developmental Disabilities (MCDD) at Kennedy Krieger Institute as part of the MCDD’s grant to develop a Center for Dignity in Healthcare for People with Disabilities (CDHPD).

As the world tries to tackle the deadly Coronavirus Disease 2019 (COVID-19), people with intellectual and developmental disabilities (I/DD) face increased odds of dying from the virus. The Centers for Disease Control and Prevention (CDC) is the agency charged with “protect[ing] America from health, safety and security threats.” Last updated September 11, 2020 [as of this blog post], the CDC webpage, “People with Disabilities,” reads, “[m]ost people with disabilities are not inherently at higher risk for becoming infected with or having severe illness from COVID-19.” And “[a]ll people seem to be at higher risk of severe illness from COVID-19 if they have serious underlying chronic medical conditions.” However, people with disabilities are more likely to have underlying medical conditions. And, according to a November 11, 2020 white paper released by FAIR Health, the death rate of people with intellectual and developmental disabilities is higher than those without them.

FAIR Health, a collaboration with the West Health Institute and Marty Makary, MD, MPH, from Johns Hopkins School of Medicine, released a white paper titled “Risk Factors for COVID-19 Mortality among Privately Insured Patients.” This white paper was highlighted by Roni Caryn Rabin’s November 11, 2020 NYTimes article, “Developmental Disabilities Heighten Risk of Covid Death.”

In the FAIR Health white paper, both “Developmental Disorders” and “Intellectual Disabilities and Related Conditions” were considered comorbidities.[1] The study found that while the death rate of all patients with COVID-19 was 0.6 percent, it was much higher for people with intellectual and developmental disabilities. In each age group,  COVID-19 patients with developmental disorders (e.g., developmental disorders of speech and language, developmental disorders of scholastic skills, central auditory processing disorders) had the highest odds of dying from COVID-19. Patients with COVID-19 in this category were 3.06 times more likely to die than patients who had COVID-19 but not developmental disorders. 

In each age group, COVID-19 patients with intellectual disabilities and related conditions (e.g., Down syndrome and other chromosomal anomalies; mild, moderate, severe and profound intellectual disabilities; congenital malformations, such as certain disorders that cause microcephaly) had the third highest risk of COVID-19 death. Patients with COVID-19 in this category were 2.75 times more likely to die than patients who had COVID-19 but not intellectual disabilities and related conditions. 

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The white paper cited several factors that likely contribute to the increase in the severity of COVID-19 for people with I/DD including: the nature of group settings; rates of comorbid respiratory disorders and comorbid endocrine, nutritional and metabolic disorders; and economic and social factors.

Other factors may include the lack of support people for people with I/DD. As recently as June, the Office of Civil Rights (OCR) at the U.S. Department of Health and Human Services (HHS) resolved a complaint with the State of Connecticut after people with disabilities were denied access to needed support persons in clinical settings.

Several COVID-19 vaccines have recently been demonstrated to be effective as they have completed Phase 3 of their clinical trials. Pfizer and BioNTech have already begun their vaccine rollout. The companies’ emergency use authorization request was reviewed at the U.S. Food and Drug Administration’s (FDA) Vaccines and Related Biological Products Advisory Committee Meeting on Thursday, December 10, 2020, and approved for emergency use authorization on the evening of December 11, 2020. And after the December 17, 2020 Vaccines and Related Biological Products Advisory Committee Meeting for Moderna’s emergency use authorization request, its COVID-19 vaccine was also approved on the evening of December 18, 2020. With more than 180 vaccines for COVID-19 in the global research pipeline, additional vaccines are likely to become available. However, the allocation of vaccines continues to be a hotly debated topic. The National Academies of Sciences, Engineering, and Medicine just released a “Framework for Equitable Allocation of COVID-19 Vaccine” recognizing that certain individuals are at an increased risk of severe illness or death from COVID-19 and offering an overarching framework for vaccine allocation. And while the FAIR Health white paper unequivocally indicates that people with I/DD are at higher risk of contracting and dying from COVID-19, the next administration’s consideration of people with I/DD in vaccine allocation remains to be seen.

[1] Comorbidities were established using the Centers for Medicare & Medicaid Services (CMS) Chronic Conditions Data Warehouse (CCW) diagnosis categories, which include common chronic conditions (e.g., diabetes, hypertension) as well as other chronic, potentially disabling condition. Autism is not included in either developmental disorders or intellectual disabilities; it is treated as a separate category in the CCW list.