According to a press release by Global Down Syndrome Foundation, an important new educational resource was released today by a consortium of national Down syndrome organizations. It has a great deal of undated information related to the impact of COVID-19 on individuals with Down syndrome. Click on any of the links for the national organizations for a PDF copy of this resource, or click here for English or here for Espanol to download it from GLOBAL.

Today, an important and timely COVID-19 and Down Syndrome Resource (“Resource”) was published by a consortium of national Down syndrome organizations: the Down Syndrome Medical Interest Group-USA (DSMIG-USA), Global Down Syndrome Foundation (GLOBAL), LuMind IDSC Foundation (LuMind IDSC), National Down Syndrome Congress (NDSC), National Down Syndrome Society (NDSS), and National Task Group on Intellectual Disabilities and Dementia Practices (NTG).

The Resource builds upon the publication of the Q&A on COVID-19 & Down Syndrome and focuses on new and updated information specific to testing, vaccines, mental health, ways to stay safe, and advocacy in hospital settings and for appropriate care. It is available in both English and Spanish.

“It is important and useful to have tips on how to help individuals with Down syndrome prepare for the vaccine, especially if they have an aversion to needles,” says Debbie Shadrix, Georgia mom to Bradley Carlisle, a self-advocate who just received his second dose. “I also think everyone should read the sections on mental health and safety!”

In December of 2020, the Center for Disease Control and Prevention (“CDC”) officially added Down syndrome to the list of medical conditions that are considered “high-risk” for severe illness or death from COVID-19. This decision was made after studies found that adults with Down syndrome, particularly those age forty and older, are 4-5 times more likely to be hospitalized and 10 times more likely to die from complications associated with COVID-19.

Adding Down syndrome to the CDC list of high-risk conditions has had implications for vaccine prioritization and distribution, another topic which is discussed in detail in the new COVID-19 and Down Syndrome Resource. 

“This Resource is very helpful in explaining the vaccines and when the CDC recommends those with Down syndrome should get it,” says Dolores Zarate, founder of Down By The Border in Texas and mother of Zariah, who has Down syndrome. “It also makes it clear that the governors and states will ultimately decide who gets it when, and we will continue to advocate for individuals with disabilities to move up in priority.”

This Resource is informational only and not intended to provide medical advice or related advice. This Resource should NOT be considered a substitute for the advice of medical professionals or other professionals. Consult with your doctor or other healthcare professional(s) for medical advice. 

The following national and international organizations support the COVID-19 & Down Syndrome Resource: Down Syndrome Affiliates in Action, Exceptional Parenting Magazine, GiGi’s Playhouse, International Mosaic Down Syndrome Association, Jerome Lejeune Foundation, Matthew Foundation, T21 Research Society, and Down Syndrome Association of Ontario.

This Resource is copyrighted and cannot be duplicated on any website or edited without infringement of intellectual property. However, families, friends, and professionals are encouraged to visit any of the consortium member websites hyperlinked below to download a PDF or share the PDF by email, text, or social media.

About the National Consortium

Down Syndrome Medical Interest Group-USA (DSMIG-USA)
DSMIG-USA is a group of health professionals committed to promoting the optimal health care and wellness of individuals with Down syndrome across the lifespan.

Global Down Syndrome Foundation (GLOBAL)
The Global Down Syndrome Foundation is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome.

LuMind IDSC Foundation (LuMind IDSC) 
The LuMind IDSC Foundation is a non-profit organization that accelerates Down syndrome research to increase availability of therapeutic, diagnostic, and medical care options and empowers families through education, connections, and support.

National Down Syndrome Congress (NDSC) 
The National Down Syndrome Congress is a not-for-profit organization dedicated to an improved world for individuals with Down syndrome. 

National Down Syndrome Society (NDSS) 
The mission of the National Down Syndrome Society is to be the leading human rights organization for all individuals with Down syndrome.

National Task Group of Intellectual Disabilities and Dementia Practices (NTG)
The NTG’s mission is to advocate for services and supports for people with intellectual disability and their families who are affected by Alzheimer’s disease and dementias.