The information below was shared on July 23, 2020. For the most up-to-date information, please see the website of the Centers for Disease Control and Prevention (CDC) at this link.
Many individuals with Down syndrome and their families have asked us questions about going back to school and work this fall in light of the ongoing COVID-19 pandemic. I will focus on adolescents and adults with Down syndrome in this article since that is the population we serve at the Adult Down Syndrome Center.
In answering these questions, an important resource to review is a Q&A document on COVID-19 and Down syndrome developed by a consortium of national Down syndrome organizations and healthcare and service providers who care for people with Down syndrome. It continues to be reviewed and updated by the consortium. The most recent version was shared on April 27, 2020. It can be accessed at this link. We anticipate that a new version will be shared soon.
In addition to reviewing the information in the Q&A document, there are several questions to consider when deciding whether to return to school and/or work this fall. Answers to these questions will vary from one person to the next. There is no one-size-fits-all decision. We encourage individuals and families to review the questions as part of their decision making process.
- What is the rate of infection in your area?
- There is variation in the rate of infections in different geographical areas (city, state, country, etc.). The decision about returning to school or work may be different for someone living in an area with a high rate of infection versus an area with a lower rate of infection.
- What is the health status of the individual?
- How is the individual's overall health?
- Does the individual have risk factors such as diabetes mellitus, ongoing heart problems, chronic respiratory conditions, obesity, and/or impaired immunity due to treatment for cancer or chronic kidney disease? For example, we see a number of adults with Down syndrome who have recurrent lung infections (such as pneumonia). We would be concerned if they were exposed to the virus since they may be at higher risk of severe illness from COVID-19.
- Is the individual over the age of 40? According to the CDC, the risk for severe illness from COVID-19 increases as you get older. According to preliminary findings from an international Trisomy 21 Research Society survey, risk seems to increase starting at age 40 for adults with Down syndrome compared to closer to 65 for adults without Down syndrome.
- Limited data indicates infection and death rates are higher among people with intellectual disabilities.
- How well does the individual follow safety and hygiene recommendations?
- Does the individual wear a mask successfully and understand physical distancing? Does the individual follow handwashing guidelines and keep their hands away from their face?
- What is the health of the people with whom the individual with Down syndrome lives? How old are they? Do they have risk factors for severe infection from COVID-19? What is the potential impact on them if the individual with Down syndrome brought the virus into the living environment?
- We have seen some individuals with Down syndrome who have been asymptomatic or had mild symptoms of COVID-19. The individual with Down syndrome may not develop severe illness from COVID-19 but others in their living environment could be exposed and develop severe illness.
- With regards to school specifically, some evidence suggests that school-age individuals may have a higher likelihood of spreading COVID-19 within their household. The article at this link describes a study done in South Korea that found that young people between the ages of 10 and 19 were the age group most likely to spread COVID-19 in their household if they were the first to show symptoms.
- Two points to note: (1) The young people in this study did not have Down syndrome and (2) This study was done when school was closed. More research needs to be done to know what could be different if the young people had Down syndrome and/or if school was open during the study. As the authors of the study note, "The role of household transmission of SARS-CoV-2 amid reopening of schools and loosening of social distancing underscores the need for a time-sensitive epidemiologic study to guide public health policy."
- What plans have the school/workplace made to keep students, teachers, and employees safe?
- Will physical distancing be possible?
- What is the policy regarding masks? What about students or employees who cannot wear a mask?
- What are the plans for sanitizing the location?
- Will there be screening protocols?
- Will students and employees be required to be tested for COVID-19 before returning?
- What is the importance of what you are returning to?
- We understand that there are physical, mental, and social health benefits of school and work. We are not minimizing their importance. However, particularly in the higher risk situations described above, the importance of the activity must be balanced with the potential health risk. If the health risk is high, the questions that follow become even more important.
- What alternative options are available? What alternatives could be developed?
- Some schools and workplaces have been very creative in using video technology for virtual interaction and developing safe protocols to allow for some in-person interaction. In order to go back to school or work safely during the COVID-19 pandemic, changes must be made. But we can still engage meaningfully with school or work if we prioritize safety, think creatively, and be open to alternatives.
We acknowledge that we are cautious in our approach to the COVID-19 pandemic. Unfortunately, in our medical practice, we have experienced the range of what this virus can bring. Compared to the overall size of our practice, we have seen a significant number of individuals with Down syndrome develop COVID-19. Some have had no symptoms, others have had mild symptoms, and some have had severe symptoms. Among our patients, we estimate that the death rate from COVID-19 has been at least two times higher than that of people without Down syndrome (based on comparison to published data from the CDC). The number of patients we have seen is not large enough to draw conclusions to all people with Down syndrome. Additionally, particularly with smaller numbers, other factors such as rate of testing can have a greater effect on the data. However, our experience suggests that caution is warranted. Until we have more data, our recommendations will continue to encourage safety and caution.