Adults with intellectual and developmental disabilities are at greater risk—three times greater than the general population—of COVID-19 complications and/or death. That risk factor is higher than those of most serious medical conditions.
Yet only 10 states have listed adults with IDD as a prioritized population in their vaccine action plans.
I serve as a member of the CFAC—the Consumer and Family Advisory Committee—for Vaya Health in North Carolina, and today the CFAC sent a letter to state officials recommending adults with IDD be added to North Carolina’s list of prioritized populations immediately.
In North Carolina, as in many places around the country, state officials have been emphasizing equity for historically marginalized populations. Surely the intellectually disabled community has been immeasurably marginalized historically and still is marginalized today in most every way—and members of this community are dying of COVID at a higher rate than people with cancer, heart failure, liver disease, or kidney disease.
As the letter notes: “We know that if adults with IDD are not explicitly and prominently included in direction in the COVID-19 Vaccine Plan, in reality they will end up being overlooked and last in line, as they often are in many ways, including general medical care. Given the vulnerabilities of the IDD population to COVID-19 specifically, that would be cruel and unacceptable.”
I am including the text of the letter below, in case you would like to check your own state vaccination schedule and, if your state is not one of the 10 that have already recognized adults with IDD as a vulnerable population to prioritize, adapt it to use as a template in your advocacy for them.
Stay safe and well.
Here’s the text:
Adults with intellectual and developmental disabilities are at higher risk (three times relative to the general population) of COVID-19 complications and/or death than adults with many serious medical conditions, including heart failure, chronic kidney disease, liver disease, and various types of cancer.
Residence of IDD adults in congregate settings accounts for some of that, without question, and we are pleased that IDD residents and staff in congregate settings received high vaccine priority. However, both the prevalence of significant co-occurring conditions, diagnosed and undiagnosed, in the IDD population and profound deficits in basic access to healthcare also contribute.
Additionally, even with access to care, adults with IDD often receive lower priority in care and access to care, given the perception by some medical professionals of poorer quality and value of life.
This week the CDC added Down syndrome to its list of conditions that carry an increased risk of severe illness from COVID-19, and 10 states have specifically prioritized adults with developmental disabilities in their vaccine plans. We recommend North Carolina join them promptly.
We recommend that the state immediately amend its COVID-19 Vaccine Plan to place adults with intellectual and developmental disabilities explicitly in a prioritized, listed group.
We recommend that NCDHHS publicly announce the change so medical and service providers are alerted to it in a prominent and instructive way.
We know that if adults with IDD are not explicitly and prominently included in direction in the COVID-19 Vaccine Plan, in reality they will end up being overlooked and last in line, as they often are in many ways, including general medical care. Given the vulnerabilities of the IDD population to COVID-19 specifically, that would be cruel and unacceptable.
We thank you for your consideration and for your work on behalf of all the people—including the most vulnerable—of North Carolina as we work together to overcome the threat of COVID-19.
Ray Hemachandra at Golden Moon Circles 
Hello. I am currently interested in advocating in favor of persons with IDD receiving priority access to the COVID 19 vaccine. Could you provide the citation for your statistic that people with IDD are three times more likely to experience complications and even death from a COVID infection than the general population? I believe a reference to the citation can make my advocacy letter stronger and I am interested in reading about it as well. Thank you.
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Hi Brittany Reavis,
Thank you for your question. The initial citation for that part of the letter is from https://www.disabilityscoop.com/2020/11/16/mounting-evidence-points-to-serious-covid-19-risk-for-those-with-idd/29084/
It begins: “People with developmental disabilities who contract COVID-19 face a higher risk of dying from the virus than just about anyone else, new research indicates. A review of private health insurance claims data for 467,773 people diagnosed with the coronavirus in the U.S. between April and August finds that individuals with developmental disorders are three times more likely to die compared to others. That’s the highest risk of any of the 15 conditions that the study looked at, which included heart failure, chronic kidney disease, liver disease and various types of cancer. Meanwhile, a separate category for people with intellectual disabilities and related conditions like Down syndrome showed a risk of death 2.75 times higher and was third on the list of conditions. That was followed by spina bifida and other nervous system anomalies. Lung cancer, with a nearly threefold increased risk, was the only other condition to rival the rate of death seen in those with developmental disorders and intellectual disabilities. (The study) comes from FAIR Health, a nonprofit with the nation’s largest private health care claims database, in conjunction with the West Health Institute and Marty Makary of the Johns Hopkins University School of Medicine. The findings largely mirror those from a handful of other studies that have looked specifically at the fate of people with developmental disabilities during the pandemic. But, the new review puts into context how the risk facing individuals with developmental disabilities exceeds that of those with nearly every other condition, no matter their age.”
I say the initial citation because subsequent reporting in Disability Scoop that was focused specifically on Down syndrome, in addition to intellectual and developmental disabilities more broadly, furthered that initial account.
Thank you very much for your advocacy, Brittany!
Best, Ray Hemachandra
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