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 40 years old or older, so we must remain vigilant and update our resources as available information and recommendations evolve.

DSNetwork is proud to share the valuable, free COVID-19 & Down Syndrome Resource published by GLOBAL and the national consortium – DSMIG-USA, GLOBAL, LuMindIDSC, NDSC, NDSS, and NTG. The Resource focuses on new and updated information, vaccines for kids aged 5-11, COVID-19 boosters, breakthroughs, mental health, ways to stay safe in schools, precautions for people with Down syndrome, and advocacy. Please remember we are here for you during this difficult time.

Basic Information on COVID-19 & Down syndrome

Download flyer on COVID-19 and Down syndrome, published by Global Down Syndrome Foundation.

Click here for easy-to-read booklets (“social stories”) about COVID-19 and vaccines have been created for people with intellectual disabilities by a healthcare organization in Canada. Here are also some excellent videos that you might consider using in answering some of the questions that you loved one with Down syndrome might have:

Video (1:00): How Would COVID Vaccines Work in the Body (Washington State Department of Health)
Video (2:56): Dreaming of a Safe COVID-19 Vaccine (Stanford Medicine)
Video (2:30): Vaccines Do Not Cause COVID-19 (COVID Prevention Network)

Click here for full article on Hospital Visitation Updates for Individuals with Disabilities

Template Letter Here

The coronavirus pandemic affects many aspects of our lives and one major change is how hospitals, outpatient clinics, and outpatient surgical facilities have changed their visitor policies. Many hospitals, clinics, and facilities adopted blanket bans on visitors with no (or limited) exceptions that exclude support persons for people with disabilities. Frequently, exceptions have been limited to permitting visitors for pediatric patients, end of life patients, or patients going through childbirth.

Visitor policies that exclude the presence of support for patients with disabilities, such as a family member, violate the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, Section 1557 of the Affordable Care Act and the Arizonans with Disabilities Act. These civil rights laws require covered healthcare facilities to provide reasonable modifications to policies for individuals with disabilities. Without a family member or support person, some patients with disabilities are being denied equal access to medical treatment, effective communication, the ability to make informed decisions and provide consent, and maybe unnecessarily subjected to physical and pharmacological restraints. Read more >>

Download HHS-Bulletin on Civic Rights-CoronaVirus-3-28-20

People with disabilities and other vulnerabilities should keep a copy of the bulletin with them to share with medical professionals should they need to seek treatment for COVID-19

HHS issued a Bulletin on Civil Rights, HIPAA and the Coronovirus Disease last week which clearly spells out that, “…persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative “worth” based on the presence or absence of disabilities. Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient based on the best available objective medical evidence.”

Arizona Center for Disability Law
177 North Church Ave, Suite 800
Tucson, Arizona 85701-1119
Phone: (520) 327-9547 | Toll-free: (800) 927-2260
Email: center@azdisabilitylaw.org  | www.azdisabilitylaw.org

COVID-19 Vaccines for People with Down Syndrome

The Down Syndrome Medical Interest Group, a national organization of Down syndrome clinical experts, recommend that all adults with Down syndrome receive the vaccine, unless they have a specific contraindication.


Per The Down Syndrome Program at Massachusetts General Hospital:  The FDA announced, and the CDC recommended that certain people whose immune systems are compromised moderately to severely should receive an additional dose of the mRNA COVID-19 vaccine after the initial 2 doses. This would include the following patients with Down syndrome who are 12 years or older:

  • who are actively receiving treatment for cancer, such as leukemia
  • who received a stem cell transplant within the past 2 years
  • who are on active treatment with high-dose corticosteroids or other drugs that may suppress your immune response.

The CDC does not recommend, and the vaccines are not authorized by the Federal Drug Administration (FDA) for additional doses or booster shots for any other patients at this time. Recipients of the Johnson & Johnson/Janssen COVID-19 vaccine are not eligible to receive additional doses.

ADHS Website>>

The Arizona Department of Health Services (ADHS) is prioritizing the distribution of the COVID-19 vaccine in Arizona in three phases. Phase 1 has 3 distribution timeframes (A, B, C). AZ is currently in Phase 1A and 1B which includes healthcare personnel, healthcare support occupations and long-term care facility residents (and staff at these facilities), Direct Care Workers providing home and community based services to members in their own homes.

People with Down syndrome, ages 16 and older, living in congregate living arrangements (group homes) are eligible during Phase 1B which is now underway in AZ. People aged 16 and older, who have 2 or more high-risk medical conditions, as defined by the CDC, will be eligible at the beginning of Phase 1C. Down syndrome is defined as one of those high-risk medical conditions. Intellectual disability is a “neurological condition” and is another high-risk medical condition. Therefore, all people with Down syndrome, ages 16 and older, should be eligible to receive the vaccine in AZ at the beginning of Phase 1C. Below is a chart of the Vaccine Prioritization…click image to enlarge.

Currently, Maricopa County has a pre-screening tool in order to determine whether an individual meets the criteria for the Phase 1A or 1B population. Points of Dispensing (POD) sites are being established in each county. Please refer to the ADHS COVID-19 vaccine web page for county contacts and additional information about the vaccine and distribution plan. Additional links for county and clinic pre-registration and pre-screening for vaccine availability can be found at http://azhealth.gov/findvaccine

Qualified Vendors and Providers may get questions from members or their families regarding the COVID-19 vaccine. The AZ Division of Developmental Disabilities (DDD) has added a link to a COVID-19 Vaccine Information in Plain Language document created by the Self Advocacy Resource and Technical Assistance Center (SARTAC) on its Actions Related to COVID-19 web page. DDD is still awaiting confirmation on whether additional DDD members (not living in Long-Term Care Facilities) will be included among Phase 1C. Check the DDD website for additional information as it becomes available from ADHS.

Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health, estimated that the process for approving vaccines in children will begin soon, and that research data will likely need to be reviewed by the FDA before vaccines are distributed in people younger than 16 years.

Click here for a sample letter of medical necessity that families can ask primary care providers to sign for their loved one with Down syndrome. (Note that people ages 16–17 are only eligible to receive the Pfizer-BioNTech vaccine.)

Posted by the CDC:

COVID-19 vaccination will help protect you from getting COVID-19. You may have some side effects, which are normal signs that your body is building protection. These side effects may affect your ability to do daily activities, but they should go away in a few days.
Learn more>>
Download flyer

DSNetwork has been able to continue offering some of its programs via Virtual Zoom Groups. Visit our event page for up-to-date opportunities. Click here for calendar of events

COVID-19 Related Resources for Down syndrome

Resources During This Uncertain Time
For more than 40 years, Raising Special Kids has been providing assistance and credible resources for Arizona families. Their work continues in this uncertain time and are regularly updating resources on COVID-19 on their website.

LuMind Down Syndrome Foundation keeps up-to-date Information on their website about COVID-19 and Down Syndrome. LuMind IDSC is committed to providing frequent COVID-19 updates that are evidence-based and relevant, and whenever possible, specific for Down syndrome. Learn more>>

NDSC, following the lead of the trusted experts at the Down Syndrome Medical Interest Group, and in agreement with Dr. Fauci, recommend people with Down Syndrome receive the vaccines. In December, the Centers for Disease Control (CDC) added those with Down syndrome to the list of People with Certain Medical Conditions at increased risk of severe illness from the virus that causes COVID-19. A recent Science Magazine report suggests that people with Down syndrome are five times more likely to be hospitalized with severe illness and ten times more likely to die from complications from COVID-19.

To address the many questions, NDSC has created FAQ Fact Sheets in both English and Spanish about the vaccine, as well as a plain language infographic that can be found in the NDSC COVID-19 Resource Library. NDSC is also working with national partners on an updated comprehensive, medically-reviewed COVID-19/Down syndrome information document, which should be released later this month.

>> NDSC Plain Language COVID-19 Vaccine Infographic

>>NDSC COVID-19 Resource Library

Phoenix Children’s Hospital has put together great resources regarding Down syndrome and COVID-19.

The T21 Research Society (T21RS) is conducting an international survey of COVID-19 in Down syndrome. The survey is for caregivers of and clinicians for individuals who have been diagnosed with COVID-19 at some point.