Are AAC Users at Greater Risk of Dying from COVID? (Updated)

two people in blue-green scrubs and masks hovering over a patient(Updated December 23, 2020, and March 14, 2021)

There are two main COVID risks: (1) the risk of getting the coronavirus that causes COVID-19 and (2) the risk of having serious complications or dying from COVID-19 if you do get it.

The first risk depends entirely on a person's daily environment, their actions, and the actions of those around them. We know that many people who cannot speak and who rely on augmentative and alternative communication (AAC) strategies do face higher risks of contracting or getting the virus. That is because so many of us live in group or "congregate" settings. More people = more exposure to potential carriers = more transmission risk. It is also because, due to our disabilities, we often cannot take necessary precautions to reduce that risk, like wearing masks, staying six feet away from others, washing hands frequently, and cleaning surfaces around us.

The second risk is whether we are more likely to be hospitalized and die from COVID if do get the coronavirus. Even before there were any studies on whether we had higher disability-related biological or neurological risk factors that might make COVID more harmful to us, many of us knew the answer to this question was "yes." We knew from lived experience that there is a much higher chance that we will be discriminated against and denied life-saving care if we need it. As Joseph Shapiro's recent story on National Public Radio makes abundantly clear, even thirty years after the passage of the Americans with Disabilities Act, society continues to make unwarranted assumptions about the value and quality of our lives and violates our civil rights in the process.

Moreover, because of our communication disabilities, and because we were (and still are) unlawfully denied access to necessary in-person communication supports in hospitals, we are at a severe disadvantage for advocating for our own life-saving care. Because we are more likely to be discriminated against and denied adequate medical treatment if we get COVID, we know there's a greater chance we'll die from COVID if we get it because bias, stereotypes, and denial of accommodations limit our access to health care.

But we now have ten studies suggesting some AAC users also have inherently higher risks of dying from COVID if we get the virus — regardless of these other environmental and societal factors. These studies did not specifically look at people who need and use AAC, but they did look at data for people with intellectual or developmental disabilities (I/DD). CommunicationFIRST serves anyone who cannot rely on speech to be understood, regardless of cause or age of onset. Many older adults have acquired speech loss due to conditions like ALS, Parkinson's disease, stroke, brain injury, and multiple sclerosis. But the majority of our younger population — including students in pre-K to 12 school settings — owe their speech disability to conditions like autism, apraxia, cerebral palsy, Down syndrome, and rare genetic syndromes. These conditions all fall into the I/DD umbrella category.

These ten studies, published between May 2020 and March 2021, tell us that AAC users who have intellectual or developmental disabilities are between 1.7 and 16 times* more likely to die from COVID if they get it than those who do not have I/DD. 

We've compiled, summarized, and linked to each of the studies below. They are arranged in order from when they first were made available online. We'll update this post with new studies as they become available.

The critical point is that we now know AAC users with I/DD (including most students who need and use AAC) are at higher risk of dying from COVID if they get it. And because many AAC users — due to their disabilities — are unable to take safety precautions like wearing masks and keeping 6 feet away from others, they are also at higher risk of contracting the virus, especially if they are exposed to other people outside their bubble. Everyone who loves an AAC user must take extra precautions to protect us from getting COVID-19, because if we do get it we are much more likely to die. And those with I/DD should be included in the high-risk vaccine priority category.

The vaccine is not expected to be available to children under age 16 until August 2021 at the earliest. We must remain vigilant until this virus is under control.

________

The "16 times" figure comes from the first (May 24, 2020) TriNetX paper below. It was derived by dividing the case fatality rate of 1.6% in the I/DD population by the 0.1% case fatality rate in the no-I/DD population. In correspondence with the authors of this paper, they note that the 1.6% and 0.1% case fatality rates were calculated from just 2 and 1 COVID-associated deaths, respectively. Because of that small sample size and the varying statistical significance levels, the authors did not compute what is known as an "odds ratio" from this data for this group of patients under age 18. The "16 times" figure should therefore be interpreted with caution. If and when the TriNetX analysis is updated with more fulsome data, we will amend this to reflect the updated case fatality rates and odds ratios.


COVID-19 CASE FATALITY STUDIES OF THOSE WITH INTELLECTUAL OR DEVELOPMENTAL DISABILITIES 

    1. Available online May 24, 2020: Turk, MA, Landes, SD, Formica, MK, & Goss, KD (July 2020), “Intellectual and Developmental Disability and COVID-19 Case-Fatality Trends: TriNetX Analysis,” Disability and Health Journal 13(3): 100942 (link)
      • Used TriNetX COVID-19 Research Network real-time database of electronic medical records (55 million patients globally) to compare COVID-19 death rates between individuals of all ages with and without I/DD, overall and by age group, from January 20 to May 14, 2020. Of the 55 million patients in the database at the time, 30,282 had COVID-19 diagnoses, including 474 with I/DD and 29,808 without. (I/DD was identified by ICD-10 codes for cerebral palsy, autism, Down syndrome, intellectual disability, and other developmental disability.)
      • Key Takeaway: COVID patients under age 18 with I/DD had a 1.6% chance of dying, compared to those without I/DD, who had less than a 0.1% chance of dying if they contracted COVID. COVID patients between the ages of 18 and 74 with I/DD had a 4.5% chance of dying, compared to those without I/DD, who died at a rate of only 2.7%. In other words, if you were under age 18, the data suggest you were 16 times more likely to die from COVID if you got COVID and had I/DD than if you didn't have I/DD (note that because the 1.6% and 0.1% figures are derived from only 3 deaths total, the "16 times" figure should be interpreted with caution). And if you were between 18 and 74 years old and got COVID, you were 1.7 times more likely to die if you had I/DD than if you didn't.
    2. Available online June 9, 2020: Joseph Shapiro, “COVID-19 Infections and Deaths Are Higher Among Those with Intellectual Disabilities,” National Public Radio (June 9, 2020) (link)
      • Analyzed COVID case fatality data through June 3, 2020, of people with intellectual disabilities and autism who receive services from the states of Pennsylvania and New York; data from New York State Department of Health, Pennsylvania Department of Health, Pennsylvania Office for People with Developmental Disabilities, and New York Office for People with Developmental Disabilities
      • Key Takeaway: “In Pennsylvania, numbers obtained by NPR show that people with intellectual disabilities and autism who test positive for COVID-19 die at a rate about twice as high as other Pennsylvania residents who contract the illness. In New York, the state with the most deaths from COVID-19, people with developmental disabilities die at a rate 2.5 times the rate of others who contract the virus.”
    3. Available online June 24, 2020: Landes, SD, Turk, MA, Formica, MK, McDonald, KE, & Stevens, JD (October 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): 100969 (link)   
      • Analyzed symptomatic COVID-19 case rates, case-fatality, and mortality among 20,431 adults (18 and over) with I/DD living in residential group homes (4-14 residents) in New York state through May 28, 2020, compared to New York state's overall 2019 population of 19,453,291. COVID data obtained from New York Department of Health and New York Disability Advocates (NYDA), a coalition of organizations serving individuals with I/DD. 
      • Key Takeaways: Between the start of the pandemic and May 28, 2020, 15% of adults with I/DD living in residential group homes in New York state died from COVID if they contracted it, whereas 7.9% of people in New York state overall died from COVID if they contracted it (case fatality rate). The COVID mortality rate of those with I/DD in group homes was nearly 8 times higher than the general population - 1,175 per 100,000 for people with I/DD compared to 151 per 100,000.
    4. Available online September 16, 2020: Landes, SD, Turk, MA, Formica, MK, & McDonald, KE, “COVID-19 Trends Among Adults with Intellectual and Developmental Disabilities (IDD) Living in Residential Group Homes in New York State through July 10, 2020,” Syracuse University Lerner Center for Public Health Promotion Research Brief #32 (Sept. 16, 2020) (link)
      • Compared data from April 10 to July 10, 2020, for 13,200 adults with I/DD living in Medicaid waiver-funded group homes in New York state with overall COVID-19 trends in the state
      • Key Takeaway: “Case-fatality rates (the percentage of confirmed COVID-19 cases that resulted in death) were 2.7 times higher for people with IDD (19%) than for New York State overall (7%) on April 10. The case-fatality rate then dropped but remained approximately 2.0 times higher for people with IDD (~16%) than for New York State overall (8%) from April 17 to July 10.”
    5. Available online October 2020: Scott Spreat, Ryan Cox, & Mark Davis, "COVID-19 Case and Mortality Report: Intellectual or Developmental Disabilities" (undated) (link)
      • Examined data provided by 8 US states through May 31, 2020 (California, Colorado, Indiana, Maryland, New Jersey, New York, Pennsylvania, Virginia) for 611,202 individuals with an I/DD diagnosis who are on Medicaid and served by either an I/DD HCBS waiver or an ICF/IID (compared to 8-state population total of 107,722,117)
      • Key Takeaway"12.3% of adults with I/DD died from reasons related to the infection, while only 6.7% of members of the general public who contracted the virus ultimately died from reasons related to COVID-19.... The likelihood of an individual with I/DD being diagnosed was roughly equivalent to that of a member of the general public (1.1 times more likely). Once diagnosed, however, the individual with I/DD was 1.84 times more likely to die than an infected member of the general public."
    6. Available online October 21, 2020: Clift, AK, Coupland, CAC, Keogh, RH, Hemingway, H, & Hippisley-Cox, J (2020), “COVID-19 Mortality Risk in Down Syndrome: Results From a Cohort Study of 8 Million Adults,” Annals of Internal Medicine (link)
      • Analyzed data from January 24 to June 30, 2020, from 8.26 million adults (age 19 and over) in the United Kingdom, including 4,053 adults with Down syndrome
      • Key Takeaway: Adults with Down syndrome were 10.39 times more likely to die from COVID-19 if they contracted it than people without Down syndrome, even controlling for age, sex, ethnicity, BMI, dementia diagnosis, care home residency, congenital heart disease, and other comorbidities. 
    7. Available online November 11, 2020: FAIR Health, West Health Institute, & Makary, M, “Risk Factors for COVID-19 Mortality Among Privately Insured Patients: A Claims Data Analysis,” FAIR Health White Paper (Nov. 11, 2020) (link)  
      • Analyzed data from privately insured US patients in the FAIR Health National Private Insurance Claims repository longitudinal dataset of 100 million lives, including the 467,773 patients diagnosed with COVID-19 from April 1, 2020, through August 31, 2020
      • Key Takeaways: 
        • COVID-19 patients under age 70 with developmental disorders (DD) (not including autism, which wasn’t included in this study) were 4.76 times more likely to die than those without DD. People with DD under age 70 who contracted COVID-19 had a 5.3% chance of dying.
        • COVID-19 patients under age 70 with ID and related conditions (including Down syndrome, but not including autism) were 3.61 times more likely to die than those without ID. People with ID under age 70 who contracted COVID-19 had a 2.32% chance of dying.
    8. Available online December 5, 2020: Landes, SD, Turk, MA, & Wong, AWWA (in press), “COVID-19 Outcomes Among People with Intellectual and Developmental Disability in California: The Importance of Type of Residence and Skilled Nursing Care Needs,” Disability and Health Journal, 101051 (link) 
      • Analyzed data on COVID-19 outcomes for all 354,640 people of all ages in California receiving I/DD services from early May through October 2, 2020, based on seven types of residence, compared to 39,157,583 Californians not receiving I/DD services
      • Key Takeaway: Californians not receiving I/DD services who contracted COVID-19 had a 1.9% chance of dying, whereas those receiving I/DD services who contracted COVID-19 had a 5.5% chance of dying. Californians receiving I/DD services across all residential settings thus had a 2.8 times greater likelihood of dying from COVID-19 if they caught it then people who did not receive I/DD services. People with I/DD living in their own home or a family home had a 2.8% chance of dying, compared with people with I/DD living in group or congregate settings, who had case fatality rates ranging from 4.3% to 20.4%.
    9. Available online December 23, 2020: Alistair MacDonald & Caitlin Ostroff, "Covid-19 Is Deadlier for People with Autism, Down Syndrome. Now Families Are Pushing Hard for Vaccines," Wall Street Journal (Dec. 23, 2020) (link)
      • Analyzed data from 12 US states through mid-December 2020. The authors confirmed in personal correspondence that the data included people of all age groups with I/DD who received services from the state.
      • Key Takeaway: People with "intellectual developmental disorders," which is not defined in the article (but which the authors confirmed in personal correspondence was intended to refer to people with intellectual or developmental disabilities (I/DD)), are 2.5 times more likely to die from COVID-19 if they get it than people without such disorders
    10. Available online March 5, 2021: Gleason, J., Ross, W., Fossi, A., Blonsky, H., Tobias, J., & Stephens, M. (2021), "The Devastating Impact of COVID-19 on Individuals with Intellectual Disabilities in the United States," NEJM Catalyst (link)
      • Examined records of 64,414,495 patients of all ages, including 127,003 with intellectual disabilities, across 547 health care organizations from January 2019 through November 2020 using the Vizient Clinical Database/Resource Manager
      • Key Takeaways
        • Patients with ID had higher rates of COVID-19 incidence than those without ID (3.1% vs 0.9%)
        • Patients with ID were more likely thank those without ID to be admitted to the hospital if diagnosed with COVID-19 (63.1% vs. 29.1%)
        • Those with ID and COVID-19 had higher rates of ICU stay thank those without ID and COVID-19 (14.5% vs. 6.3%)
        • Patients with ID were more likely to die than those without ID following diagnosis of COVID-19 (8.2% vs. 3.8%)
        • Having ID is the strongest independent risk factor getting diagnosed with COVID-19
        • Having ID is the second-most strongest risk factor (after age) for dying from COVID-19
        • "These odds of mortality in this population is significantly higher than other conditions such as congestive heart failure, kidney disease, and lung disease."
        • "The risk of exposure in this population can be explained by a number of factors, including the need for daily care that many with intellectual disabilities have, which requires regular contact with home-care support personnel and others, use of shared transportation, and in many cases residence in high-contact housing such as long-term care facilities. Some individuals with intellectual disabilities have sensory issues that make tolerating mask-wearing for long periods of time difficult. Cognitive impairments and communication difficulties also raise the question of need for family or caregiver support when hospitalized. Beyond the direct risk of Covid-19, the pandemic has had negative effects on the ability of individuals with intellectual disabilities to receive the health care and daily support that they typically receive. Providers who are not cognizant of this medical limitation may incorrectly turn them away, even though this limitation is covered by the Americans with Disabilities Act. A lack of typical supportive services may lead to increased behavioral issues and treatment with psychotropic medication with negative side effects, including weight gain. These risk factors and the additional barriers previously discussed indicate that increased resources are needed to vaccinate this vulnerable population and those who provide direct care, to prevent Covid-19 infection. It is notable that the inpatient mortality is elevated in this group, but ICU admission was not elevated. This raises questions about whether critically ill patients with intellectual disabilities are less likely to be transferred to a higher level of care, or if this reflects differences in advanced care planning in this population."