Based on the much higher casualty rate for individuals with Intellectual and Developmental Disabilities (IDD) as reported from the state of New York, caregivers of individuals with Down syndrome have one job when it comes to COVID-19: do not let your loved one get infected.

Higher infection and death rate for those with IDD & COVID-19

Syracuse University’s Lerner Center for Public Health Promotion issued a report sharing concerning numbers of the infection and death rate amongst those with IDD.

According to the report, of the 140,000 New York residents with IDD, 1,100 were confirmed to have COVID-19. This equates to an infection rate of 0.7%. According to this helpful resource from the New York Times, at the time of this post, there were 606,800 positive cases nationwide. With a total population of around 330,000,000, that equates to an infection rate of 0.18%. This means the infection rate amongst those with IDD in New York is 3.8 times higher than the total infection rate nationwide.

Of even more concern is the death rate. Nationwide, there have been 25,922 deaths at the time of this post. Given the 606,800 positive cases, that equates to a death rate of 4.2%. New York’s death rate at the time of the Syracuse report was 4.4%. The death rate for those New Yorkers with IDD who had COVID-19? 9.5%. More than double the death rate experienced by all cases.

Death rate from pneumonia & under reporting of COVID-19 deaths

Pneumonia is one of the complications associated with COVID-19, given that it is a respiratory disease. The Syracuse researchers reviewed 2017 data for the death rate of individuals with IDD and pneumonia. The bar graph at the top of this post is a graphical illustration of what their research found, and is terrifying if you are a caregiver to someone with Down syndrome.

The death rate from pneumonia amongst those individuals with IDD is between 2.2 and 5.8 times higher than the rate for individuals without IDD. The 5.8 times higher bar in the graph shows that pneumonia kills individuals with Down syndrome at a higher rate than any one studied.

What is even more troubling is that the researchers found that cause of death is often inaccurately recorded for those with COVID-19 and IDD. From the report:

On close to half (48%) of the death certificates of people with IDD, certifiers inaccurately identify the individual’s disability as their underlying cause of death.

This means, if anything, the more than double death rate from COVID-19 for individuals with IDD is underestimated.

Patience wearing out

In the same week that the Syracuse report came out, other headlines were reported showing that for many, their patience is running out with the social distancing and shutdown of businesses:

New Jersey women defy two governors, drive to Kentucky for Easter services

Police visit Cowboys QB Dak Prescott’s home after report of ‘party‘ during coronavirus pandemic

Thousands protest Michigan governor’s social distance order

and, as I was writing this post:

Protests erupt outside Capitol over Beshear’s handling of pandemic, disrupting briefing

Eventually, the shut-down/social-distancing restrictions will be lessened, businesses will re-open, and more people will congregate. No doubt, this is what we all hope will eventually happen.

But, until there is a vaccine, the threat of being infected will not only remain, it may return to its high rate of risk. Already, as some countries are plateauing, the concern now is for a second peak following the re-opening of businesses and society, and, then, the infection begins to spread again.

Caregivers’ one job

No one, aside from hermits, lacks a connection to someone who would be in a high risk category if they were to become infected. We all have parents, mentors, co-workers, and loved ones who are of older age or immuno-compromised. But, obviously, and to some extent understandably, there are many who have weighed the risk and decided they would rather risk infection of them or their loved ones if it meant they got to return to work and a closer-to-normal everyday life.

But for those of us who are caregivers of individuals with Down syndrome, is being able to go back to the office, attend a football game, relax at a restaurant or bar on a weekend night going to be worth a near 1-in-100 chance of your loved one getting COVID-19? Especially when that means, if they do get infected, your son, daughter, brother, sister, uncle, aunt, or friend with Down syndrome will have almost a 1-in-10 chance of dying?

The stakes are higher for those of us with loved ones with Down syndrome. Therefore, we have one job: do not let them get infected. And, that starts with each of us minimizing our chance of being infected.