Covid -19 and Down syndrome Resources

Down Syndrome Indiana’s number one concern is the safety and health of the families we serve. Down Syndrome Indiana is committed to following the recommendations of health officials.

We are also committed to serving you and ensuring the continuity of operations of the organization. DSI will continue to operate during this time. Down Syndrome Indiana staff will continue to answer phones and respond to emails though most of us will be doing so remotely. We are still here for you.

Tell us how COVID-19 has Affected your Family

Updated March 15, 2021

The University of Indianapolis Krannert School of Physical Therapy has partnered with Down Syndrome Indiana to help us identify how the COVID-19 pandemic has affected your family. Please click on the link below for an anonymous survey that will take you about 10 to 15 minutes to complete. Your responses will be completely anonymous and no identifying data about you will be tracked or recorded. Please respond by April 5th, 2021. Thank you for helping us better understand your needs. 

Link to the survey:

Important Vaccine Update

Updated March 2, 2021

The Indiana Department of Health is now in phase 1B, which includes Indiana’s most vulnerable populations, including individuals with Down syndrome (ages 16+). See letter from the Indiana Department of Health:  Special-population-2.25.21-1

You will be receiving a letter via email and postal service inviting individuals with Down syndrome to register to receive the COVID-19 vaccination. This is a new process. You’ll receive a text message and/or email in the near future with a link unique only to the individual with Down syndrome and that can only be used once to sign up for a vaccine appointment. Hoosiers, with Down syndrome, who are 16 and 17 years old will need to sign up for sites administering the Pfizer vaccine (i.e. hospitals), and that information is available for each site when you schedule. You should bring that letter with you to your appointment, but it is not required if you sign up with your unique link.

The Indiana Department of Health asks you to please take these steps now to make sure you are ready to receive the vaccine when it’s available to you:

  • Touch base with your provider to ensure your medications won’t interfere with the vaccine.
  • Ensure your healthcare provider has your correct email and cell phone number (or the contact information of someone who can help you). This step is important because the Indiana Department of Health is relying on providers to identify individuals with Down syndrome.

As stated above, Indiana is now working to vaccinate those with certain medical conditions that place them more at risk than others of becoming severely ill if infected with COVID-19. In addition to Down syndrome, the medical conditions include:

  • Active dialysis patients
  • Sickle cell disease patients
  • Post-solid organ transplant
  • People who are actively in treatment (chemotherapy, radiation, surgery) for cancer now or in the last three months, or with active primary lung cancer or active hematologic cancers; lymphoma, leukemia and multiple myeloma

If you have any of these conditions, you will soon be eligible to receive the COVID-19 vaccine. If you do not receive notifications (letter, email, text) with your loved one’s unique code by March 15th, please check with your primary care provider to make sure they have submitted your loved one’s information to the Indiana Department of Health.

In the meantime, please continue to wear a mask, practice good hand hygiene and stay 6 feet away from others you don’t live with.

For more information on the COVID-19 vaccine, visit  

NEW COVID-19 & Down Syndrome Resource

Updated March 3, 2021

In December 2020, the CDC officially categorized people with Down syndrome as “high risk” for COVID-19, meaning that they have a higher likelihood of having more severe symptoms and sadly death. A few studies on COVID-19 underscore the risk to be especially acute in people with Down syndrome who are forty years old or older.

Down Syndrome Indiana, Inc. is proud to share the valuable, free COVID-19 & Down Syndrome Resource in English and Spanish published by GLOBAL and the national consortium. The Resource 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.

We strongly recommend you read through this important resource.

We applaud the national consortium of Down syndrome organizations for creating this important resource for community. Please remember we are here for you during this difficult time and do not hesitate to call or email. In the meantime, please stay healthy and be safe!

Down Syndrome Medical Interest Group – USA:  Intellectual and Developmental Disability COVID-19 Vaccination Position Statement

Updated -January 5, 2021

COVID Medical Plus


COVID-19: Preparing for an Emergency

As the pandemic has worsened, a number of adults with disabilities and their families have been concerned that 1) health care providers could deny treatment such as ventilators to people with significant disabilities and medical histories, and 2) concerned that in the current climate of zero visitors in hospitals for adults, that someone who is nonverbal and/or developmentally delayed could be hospitalized without the comfort and communication provided by their parent or other primary caregiver.

These tools can help you prepare to cope with ER visits and hospitalizations calmly and effectively:  Read more at

Indiana’s Considerations for Learning and Safe Schools (IN-CLASS)

The Indiana Department of Education (IDOE) today released 2020-2021 school year COVID-19 reentry considerations. Indiana’s Considerations for Learning and Safe Schools (IN-CLASS) was developed in partnership with the Governor’s office, the Indiana State Department of Health, the Indiana Family and Social Services Administration, the Indiana High School Athletic Association, and IDOE’s Reentry Advisory Group, comprised of practitioners and professional organizations.

“The health and safety of Hoosier students, school staff, and communities is priority one. Providing students with a quality education is critical and therefore it is crucial we offer considerations focused on getting students back in the classroom in a safe manner,” said State Superintendent Dr. Jennifer McCormick. “Considering the many unknowns associated with COVID-19, we also recognize the importance of alternative learning opportunities. We appreciate the thoughtful and collaborative spirit in which IN-CLASS was developed.”

To view the IN-CLASS reentry considerations, please visit: For more information on IDOE’s commitment to schools during the COVID-19 pandemic, including up-to-date resources, please visit:

To view IN-CLASS in Spanish: spanish-in-class-covid-19-health-and-safety-considerations-for-indiana-schools-541.


Live Question and Answer Session with Dr. Joshua Green

Down Syndrome Indiana presents a webinar with Dr. Joshua Greene about what we know about how COVID-19 may impact individuals with Down syndrome followed by a question and answer session. Available at: 


Q&A on COVID-19 and Down Syndrome

Most people with Down syndrome are at “high risk” for COVID-19 because of certain underlying medical conditions. Down Syndrome Indiana is proud to support GLOBAL and this IMPORTANT UPDATED Q&A about Down Syndrome & COVID-19.

This UPDATED Q&A includes important new resource links, information on returning to school, work and programs, and health outcomes for people with Down syndrome who have contracted COVID-19. We strongly recommend you read through this important resource and stay vigilant during this devastating pandemic.

We applaud the national consortium of Down syndrome organizations for creating this important resource for community. Please remember we are here for you during this difficult time and do not hesitate to call or email. In the meantime, please stay healthy and be safe!


DSI Ask The Expert COVID-19

Check out DSI’s newest Ask The Expert page on COVID-19 by Dr. Mary Ciccarelli with Center for Youth and Adults with Conditions of Childhood and Indiana University School of Medicine. 


Indiana State Department of Health Updates

You can sign up for direct COVID-19 updates from the Indiana State Department of Health at: Their website is updated at 10:00am daily.

#T21COVID Hashtag on Social Media

Along with other Down syndrome organizations, Down Syndrome Indiana has adopted the hashtag #T21COVID on social media (Facebook, Instagram, LinkedIn and Twitter) so that families can easily identify information on COVID-19 and Down syndrome.


LuMind IDSC Down Syndrome Foundation has a very informative video and additional resources available at:

Social Stories

Knowing that people everywhere are concerned, the DS medical professionals are in depths of discussion about heightened risks of COVID 19 for our community. With our world in quarantine and change in schedules, children experience many additional issues including exacerbated behaviors and activity.  To help children understand, this graphic might help caregivers address anxiety and help with understanding.

Corona Virus KIDS English 3.2020

Corona Virus KIDS Spanish 3.2020

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