NDSC COVID-19 and Other Resources
The mission of the National Down Syndrome Congress has always been to provide information, advocacy, and support concerning all aspects of life for individuals with Down syndrome and their families. We know that as concern for our community grows due to the coronavirus (COVID-19) pandemic, so does the amount of information that you are receiving. To help your family during the coronavirus (COVID-19) outbreak, we have sifted through the avalanche of information currently available to provide you with resources that are practical and useful to you and your family.
We are proud to have collaborated with other leading Down syndrome organizations to publish the Q&A on COVID-19 and Down Syndrome that addresses the most frequently asked questions our organizations are receiving. This document is an essential resource for individuals with Down syndrome and their families with expanded and abbreviated versions of the Q&A available in both English and Spanish.
The NDSC has gathered and vetted many resources to help our families through these unprecedented times. Parents who are now acting as teachers and therapists, or just looking for fun, free or low-cost entertainment and activities, as well as advocates who want to help make a change, can easily find the resources and ideas that they need in the NDSC COVID-19 Resource Library.
The NDSC COVID-19 Resource Library hosts resources and essential information covering topics such as Medical Resources & Facts to Follow, Online Learning Resource, Support Services Resources, Practical Explanations, Advocacy in Action, and Family Fun Activities. Below we have listed a few of our favorite resources that you will find under each category in the NDSC COVID-19 Resource Library.
Medical Resources & Facts to Follow
NDSC President and UPMC Down Syndrome Center Director, Dr. Kishore Vellody, and his colleague Dr. Andrew Nowalk, Clinical Director, Division of Infectious Diseases, UPMC Children’s Hospital of Pittsburgh recorded 2 podcasts in which they discuss COVID-19 and the concerns for the Down syndrome community.
The U.S. Food and Drug Administration is exercising its authority to protect consumers from firms selling unapproved products and making false or misleading claims. This FDA site hosts a list of companies and organizations which have been issued warnings for selling fraudulent products with claims to prevent, treat, mitigate, diagnose, or cure coronavirsus (COVID-19).
Online Learning Resource
Presented by Sean J. Smith, a professor of Special Education at the University of Kansas and an NDSC Board member, this three-part series was designed to help parents and educators make the jump from the classroom to online learning. The three sessions walk parents and educators through preparing individuals and the home for online learning, understanding the nature of online learning curriculum, content, and instructional techniques, and various tips, tools, and techniques to maximize online learning for students with disabilities. Watch any or all of the sessions now!
Do you have questions about how your child’s IEP is being implemented and what your rights are? The Department of Education has created a Q&A document that outlines states’ responsibilities to infants, toddlers, and children with disabilities and their families, and the staff serving these children during the COVID-19 outbreak.
Support Services Resources
We are thrilled to partner with The George Center to offer FREE music therapy sessions throughout this period of social distancing, with new sessions being added each week for young children, teens, young adults, and older adults. To learn more about the benefits of music therapy, you can view the recording of our recent webinar with Hannah Rhinehart, Director of The George Center.
Down syndrome Program MassGeneral-During this COVID-19 pandemic. Christina Cossa, a pediatric occupational therapist at MassGeneral Hospital Down Syndrome Program, has put together a list of helpful tips for caregivers of toddlers, preschoolers, and school-aged children with Down syndrome, who are trying to manage therapies from home.
Coronavirus: Clear Answers for All Kids is a straight forward resource that seeks to cover a wide range of questions emerging as children (and adults) struggle to understand the COVID-19 pandemic. Created with straightforward text and bright illustrations for children who process information best through words and pictures. This resource was designed for children who learn best through visual cues, and for those who may want to re-read the story and think about it independently.
Advocacy in Action
NDSC’s top-notch Policy & Advocacy team is diligently working to ensure that people with Down syndrome receive the resources from the federal government to weather the COVID-19 crisis and to protect their rights in the process.
On Thursday, April 2, 2020, NDSC’s Policy & Advocacy Team held a webinar for NDAC members –NDAC Briefing on COVID-19 : An Update on What’s Happening in Washington Concerning COVID-19. You may view the recording of the NDAC Briefing on COVID-19 or download the slide deck of the NDAC Briefing.
The Center for Public Representation (CPR), a national legal advocacy center for people with disabilities, website provides up-to-date information and resources on policy aspects of the COVID-19 crisis.
The U.S. Department of Education Supplemental Fact Sheet addresses the risk of COVID-19 in schools while serving children with disabilities and IDEA timelines.
Family Fun Activities
Join the Improvaneers every Wednesday in April at 2:00 PM for a Zoom Improv Party to learn great Improvaneer Method games to play at home to KEEP THOSE MINDS SHARP!
SproutFlix is the only distributor of films exclusively featuring people with intellectual and developmental disabilities. Through April 13th, they have ten popular full-screen, short films, FREE featuring people with intellectual and developmental disabilities.
Do you want to go to the San Diego Zoo, or Yellowstone National Park? Would you like to explore the surface of Mars or the Great Wall of China? You can see all of these places and more when you check out Virtual Field Trips!
We have also created an NDSC COVID-19 Resource Library for our Spanish speaking members. A list of resources in Spanish can be found under the En Espanol tab on the NDSC website.
Along with building the NDSC COVID-19 Resource Library, we have added many new webinars, on a variety of topics, to the NDSC Parent Webinar Series vault. The newest additions include the 3-part Online Learning series and the NDAC Briefing listed above, as well as:
- Take a Deep Breath: IDEA Implementation During COVID-19 School Closings
- Making Music Together: How Music Therapy Benefits All Ages
- Census 2020: Why it Counts to be Counted
You can also access webinars from the Parent Webinar Series archives such as:
- Our Voices Are Stronger Together: An Introduction to the Basics of Advocacy
- Decline in Skills: The Many Causes and Treatment Options Presented by Dr. Brian Chicoine
- Transitioning to Adulthood Without Falling Off a Cliff: Planning Strategies and Solutions That Allow Families to Fly Rather Than Fall as They Approach the Transition to Adulthood.
Coming April 14th – A collaborative webinar, presented by NDSC, Global Down Syndrome Foundation, and NDSS, that will address the concerns of protecting the rights of individuals with disabilities against health care rationing during the COVID-19 pandemic. Register today to attend the live session or to receive a link to a recording of the session to listen to at your convenience.
Knowledge and information about COVID-19 are developing and changing continuously. We will continue to strive to bring you the accurate, up-to-date, useful information that you expect from us. New information is continually being added so please check the Resource Library and the Parent Webinar Series often for new resources and look for regular updates in your inbox and on the NDSC social pages.
Stay safe and well.
NDSC Staff and Board of Directors