Covid Updates

Find resources on COVID-19 and Down syndrome, which are developing as the global pandemic continues. 

UPDATES on COVID-19 BOOSTER SHOTS & 3rd DOSES >>

Read the latest guidance from the CDC and Chicago Adult Down Syndrome Center

Arizona Department of Health Services

Vaccine appointments are available on the Vaccines website, check often as new appointments are added frequently. Those who think they may have been in contact with someone who is sick, please visit TESTING LOCATIONS page to find a test near you.

DID YOU KNOW?
The CDC officially categorized people with Down syndrome as “high risk” for COVID and its variants. Meaning those with Down syndrome have a likelihood of having more severe symptoms. A few studies on COVID underscore the risk to be especially acute in people with Down syndrome who are at least 40 years old, so we must remain vigilant and update our resources as information and  recommendations evolve. COVID and Down syndrome Resources, published by the national consortium – DSMIG-USA, GLOBAL, LuMindIDSC, NDSC, NDSS, and NTG, focus on new and updated information, vaccines for kids aged 5-11, COVID boosters, breakthroughs, mental health, ways to stay safe in schools, precautions for people with Down syndrome, and advocacy.

Please remember DSNetwork is here for you.

 

Basic Information on COVID and Down syndrome

COVID-19 and Down syndrome Resource

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

How can I explain and prepare my loved one with Down syndrome to receive the COVID-19 vaccine?

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)

Hospital Visitation Updates for Individuals with Disabilities

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 >>

Bulletin on Civil Rights

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 Coronavirus 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.”

Statement on the Right to Access Medical Treatment
AZ Protection and Advocacy Office

ARIZONA
CAP/PADD/PAIMI/PAIR/PABSS/PAAT/PATBI/PAVA
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

Arizona Center for Disability Law

Covid-19 vaccine for people with down syndrome

Should my loved one with Down syndrome get a COVID-19 vaccine?

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.

COVID-19 VACCINE POSITION STATEMENT – DSMIG

Can my loved one with Down syndrome get a booster for COVID-19 vaccine?

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.

How can my loved one with Down syndrome get a COVID-19 vaccine?
Arizona Department of Health Services

Vaccine appointments are available on the Vaccines website, check often as new appointments are added frequently. Those who think they may have been in contact with someone who is sick, please visit TESTING LOCATIONS page to find a test near you.

What to Expect after Getting the 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>>
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DSNetwork has been able to continue offering some of its programs via Virtual Zoom Groups. Visit our event page for up-to-date opportunities.

COVID-19 Related Resources for Down syndrome

Arizona Department of Health Services
AZ Division of Developmental Disabilities
Raising Special Kids

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.

Global Down Syndrome Foundation
LuMind Down Syndrome Foundation

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>>

National Down Syndrome Society
National Down Syndrome Congress

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

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

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