A Comprehensive Guide to COVID-19
The National Association for Down Syndrome is monitoring the developing situation with the novel coronavirus (COVID-19) in the United States. The health and wellness of all members of our community is our first priority. We are providing a list of resources to assist individuals with Down syndrome and their families during this unprecedented time.
Despite the uncertainty surrounding COVID-19, our public awareness in-services are now being offered virtually. If you are interested in scheduling a virtual presentation, please contact Linda Smarto (firstname.lastname@example.org). All of our Basket Deliveries are being made in accordance with new Hospital policies. NADS would like to extend our gratitude to all of the healthcare professionals who are bravely working on the frontlines of this pandemic.
Please Read: NADS Statement on Programs due to COVID-19
COVID-19 and Down Syndrome
- NEW: DSMIG-USA IDD COVID-19 Vaccination Position Statement
- The Down Syndrome Medical Interest Group – USA (DSMIG-USA) issued an updated position statement on the COVID-19 vaccine on January 5, 2021 (the original statement was issued 12/16/2020).
- DSMIG-USA recommends the COVID-19 vaccine for individuals with Down syndrome or other intellectual disabilities who do not have a specific contraindication to the vaccine. The providers at the Adult Down Syndrome Center agree with the statement. Read the full DSMIG-USA statement HERE.
- NEW: Check out the Adult Down Syndrome Center COVID-19 Resource Library!
- Returning to School or Work in Fall 2020 (ADSC):
- Many individuals with Down syndrome and their families are deciding whether to return to school and/or work in the fall. Brian Chicoine, MD, Medical Director of the Adult Down Syndrome Center, has shared some questions and data to consider when making these decisions.
- Q & A on COVID-19 and Down Syndrome
- The National Association for Down Syndrome applauds the national consortium of Down syndrome organizations for creating this important COVID-19 & Down Syndrome resource for our community. The unprecedented spread of novel coronavirus (COVID-19) is presenting the world with a unique challenge and calls for a united response to better understand its impact on the Down syndrome community. This Q & A goes a long way in answering these important questions.
- The Q & A is currently available in English and Spanish.
- Travel Considerations & Work Recommendations for People with Down Syndrome (ADSC)
- Read statements from Dr. Brian Chicoine, the medical director of the Adult Down Syndrome Center, on travel and work considerations for people with Down syndrome in light of the spread of COVID-19.
- Q & A on Providing Services to Children with Disabilities During COVID-19
- The United States Department of Education released a Q & A on addressing students with disabilities during school closures due to COVID-19.
- LuMind IDSC: COVID-19 and Down Syndrome
- National Institutes of Health: DS-Connect is a powerful resource where people with Down syndrome and their families can:
- Connect with researchers and health care providers.
- Express interest in participating in certain clinical studies on Down syndrome, including studies of new medications and other treatments.
- Take confidential health-related surveys. These surveys are aimed at better understanding of the health of people with Down syndrome across their lifespans.
- Helping an Individual with Down syndrome Tolerate COVID-19 Testing (ADSC)
Important Medical Forms/Information
- Federal Civil Rights Resolution MUST Accommodate Patients with Disabilities with reasonable access to support persons in Hospital settings during COVID-19
- The Office for Civil Rights (OCR) at the U.S. Department of Health & Human Services’ Resolution states that federal law requires hospitals and state agencies overseeing them to modify policies to ensure patients with disabilities can safely access the in-person supports needed to benefit from medical care during the COVID-19 pandemic.
- Highlights from the Hospital Visitor Policy:
- Requires all hospitals and other health care facilities to allow designated persons (family members, staff, or others) to support any disabled patient that may need such support;
- Requires hospitals to provide available personal protective equipment (PPE) to support persons to keep them safe;
- Includes procedures for screening support persons for COVID-19 symptoms and for supporters to safely take breaks and leave and re-enter the hospital; and
- Encourages hospitals to mitigate the risk associated with support persons supporting COVID-19-positive patients.
- To help individuals with disabilities understand the resolution and know their rights, the Green Mountain Self-Advocates and the Autistic Self Advocacy Network created an informational video and booklet.
- To learn more about the Resolution & Hospital Visitor Policies during the COVID-19 pandemic, visit the OCR’s website.
- COVID-19 Disability Form
- Filling out this form helps physicians provide your child with proper medical treatment, in case they need to go to the hospital for COVID-19 related symptoms.
- My Health Passport
- This document can be brought to hospitals and clinics when receiving medical care. It shares information with healthcare professionals about how they can best support the individual receiving medical care.
- COVID-19 Testing Site Locations (Illinois)
Helping Your Children Understand & Cope During a Pandemic
- How to Wash Your Hands
- Social Stories
- Some social stories have been created to help explain COVID-19 to individuals with special needs. They can be viewed/downloaded for FREE at the following links:
- COVID-19 Test Story: This story is made for individuals who need a little help preparing for what to expect when they need to get a COVID-19 test. Being proactive and prepping ahead of time can help reduce anxiety.
- Wearing a Mask Social Story
- Coping with Grief
- Helping Children Cope with Grief (Child Mind Institute)
- Whether the loss is a grandparent, a parent, a classmate or even a beloved family pet, the grieving process can be difficult and every child will grieve in their own way. Parents, caregivers and educators wondering how they can help will find many answers to their questions in the following guide, which has been assembled with advice from several experts in the area of child and adolescent grief. You will find tips broken down into a range of ages and experiences, and information about what to say, who should say it, what to look out for and how to help.
- Helping Children Cope with Grief (Child Mind Institute)
- Coping with Stress
Resources for Parents/Caregivers
- Coping with Stress during the COVID-19 Pandemic
- COVID-19 Advice for the Public (WHO):
- Pregnancy and Breastfeeding during COVID-19
- COVID-19: Caring for Kids with Special Needs
- How to Balance Children’s Screen Time During the Pandemic
- The Matthew Foundation’s COVID-19 Online Virtual Series
- NEW: The Matthew Foundation’s Update on COVID-19 & Down syndrome Webinar is on Friday, January 8th, 2021 at 11 am CST (noon EST). A recording of the webinar will be provided after the event here.
- The Matthew Foundation hosted a webinar on Saturday, May 30th, 2020, that provided an opportunity to learn about Mental Wellness in People with Down syndrome & I/DD during COVID-19. Dennis McGuire, LCSW, PhD, and Allan Reiss, Professor of Psychiatry & Behavioral Sciences presented. A recording is available here.
Resources for Non-English Speakers
General COVID-19 Resources
- Centers for Disease Control and Prevention (CDC)
- World Health Organization (WHO)
- John Hopkins University Coronavirus Resource Center
- National Institutes of Health: COVID-19 Information
- National Alliance on Mental Illness (NAMI): COVID-19 Information & Resources
- COVID-19 Major Enacted State & Federal Legislative Action Center (PolicyEngage)