NDSC E-News ~ May 2020 ~ Convention From Your Couch

Mission Moment
With NDSC Executive Director, David Tolleson

We’ll be there for you!

First and foremost, I hope this finds you and your family well.  We know that these are challenging times, but I want you to know that we are here for you.  Over the last few weeks, our work has continued – and in some ways increased.  As always, we remain committed to bringing you resources, programming, and information that is useful to you and your family.

Although our staff has been hard at work, we have faced some headwinds.  We had to postpone last month’s golf tournament until August (if not later) and, of course, we had to cancel this year’s in-person convention (though as you’ll see below, we have exciting information to share about our upcoming NDSC 2020 virtual event!).

Nonetheless, we’ve moved forward. Along with our national partners, we have recently updated the Q&A on COVID-19 and Down syndrome. The new version, with the most up-to-date information, is available in English and Spanish (ENG Abbreviated  ENG Extended  SP Abbreviated  SP Extended) on our website. Our staff and board have been working to provide free webinars on topics such as preparing your home and your student for online learning; protecting the rights of those with disabilities from health care rationing; and, guidance issued by the U.S. Department of Education on the provision of services to students with disabilities during coronavirus related school closures.  As well, our Policy Team held a briefing to update our members on what’s happening in Washington concerning COVID-19, and we are providing free weekly music therapy sessions in conjunction with our partners at The George Center. You’ll find these and other resources in the new NDSC Resource Library.

NDSC has been fighting for disability rights for decades, but COVID-19 has presented unique challenges that have had a disproportionate impact on the disability community. Our policy team continues to vigorously defend the educational and civil rights of individuals with Down syndrome and other disabilities, fight to gain access to government resources, and remove unnecessary barriers for assistance.  Please LIKE the National Down Syndrome Congress Policy & Advocacy Facebook page to keep up with the latest advocacy news.

Our staff is also working with leading experts to develop an online Convention From Your Couch.”This multi-week event will combine recorded and live educational and social events. While it’s not the same as us all being together, it will offer a much-needed chance to learn and connect.  I hope you’ll join us!

Of course, we are still answering phone calls and emails from members and others, who need resources on a variety of topics.  From IEP’s to behavior and beyond, we’re here for you when you need us.

We know that many are now facing financial challenges.  However, if you’re able, I hope you’ll consider supporting us with a direct donation, by remembering us on May 5 during the world-wide #GivingTuesdayNow campaign, or we would love to see you participate in our first peer-to-peer fundraising campaign as we kick off our Convention From Your Couch FUNdraising Campaign.  Getting started is easy; just text the word CONVENTION to 44321.  Families need the NDSC, and the NDSC needs you!

Together, we’ve got this!

With warm wishes,




We’ll Be There For You!

2020 Convention From Your Couch GraphicNot even a world-wide pandemic could keep us from our FRIENDS.
are thrilled to announce that We’ll Be There For You!  

Join us May 11 through June 27 for the NDSC 2020 Convention From Your Couch. This virtual experience will offer programming and social connections for the entire family.  Beginning the week of May 11, we will present 3-4 new, one-hour workshops per week, along with the opportunity to attend Sharing Sessions designed for your individual ages and stages. Plus, we will be offering five Deep Dive Sessions over the course of the event. These 3-hour interactive workshops, presented by world-renowned speakers, are designed for those interested in gaining more in-depth knowledge and engaging in discussion with an expert on a specific topic.

Starting in June, we will kick-off Youth & Adult workshops, spotlights, and of course, the talent show! There will also be sessions just for siblings in a virtual Brothers & Sisters Conference.  The multi-week event will culminate with a full-day virtual event on Saturday, June 27, that will include Advocacy Training Boot Camp; Awards Presentation; Plenary with Keynote speaker, Zack Gottsagen; Membership Meeting; and a Zoom 321 Dance Party.

Registration is just $49 per household. Optional Deep Dive sessions may be purchased as add-ons for just $19 each. While we’ll miss seeing everyone in person, we are planning a top-notch learning experience along with opportunities to socialize.

Registration is Open NOW!

2020 Registration Fee: $49/household – includes access to all workshops (general and Y&A) and social activities throughout the timeline, including sharing sessions and all June 27 activities.

Deep Dive Sessions: $19/ea. – Unlike the in-person convention, you can attend more than one Deep Dive session.

Convention From Your Couch T-Shirts:  $19/ea.

If this will be your first NDSC Convention, we hope to give you a glimpse of the magic that our one-of-a-kind annual event holds. To see more details about Convention From Your Couch visit the NDSC website.  While we will miss seeing everyone in person, we will still provide a meaningful 2020 convention and hope that you are making plans to join us in Phoenix in 2021!


Convention From Your Couch Peer-to-Peer Fundraising Campaign

If you find value in the information and resources that NDSC provides year-round, please join us for our first-ever peer-to-peer fundraising campaign. It’s easy, fun, and the TOP fundraiser will be acknowledged at the Zoom 321 Dance Party on June 27.

How can you get involved?

  1. Donate by texting the word CONVENTION to 44321
  2. Create your personal fundraising page – To get started Text the word CONVENTION to 44321 or email NDSC Development Director, Christine Milano, at Christine@NDSCcenter.org for assistance setting up your page.
  3. Click the button below to start FUNdraising NOW

START FUNdraising NOW button

Your efforts will help NDSC continue to enhance our services and programs, extend our outreach to rural and urban communities, and continue to support the families who need us the most.

Let the FUNdraising and FRIENDraising begin!

NDSC Policy Team Leads the Charge in Protecting IDEA Rights in the Time of COVID-19!

NDSC provided an in-depth analysis, which was considered by both the U.S. Department of Education and Congress, that shows that broad waivers of IDEA are not necessary and would diminish fundamental civil rights.  Under the Coronavirus Aid, Relief, and Economic Security (CARES) Act, the Secretary of Education, Betsy DeVos, was required to determine if any waiver authority is necessary to provide “limited flexibility to state and local education agencies” during the COVID-19 pandemic and also to provide her recommendations to Congress. Despite the many challenges posed by the COVID-19 pandemic, the Department of Education Secretary recognizes that the central civil rights protections in IDEA must be protected, parents must consent to changes, and learning must continue for students with disabilities. The Secretary’s report aligns with the analysis NDSC conducted of relevant sections of IDEA, E.D. guidance, and proposed waiver requests.

The U. S. Department of Education (E.D.) has announced that “the Secretary is not recommending Congress pass any additional waiver authority concerning the Free Appropriate Public Education (FAPE) and Least Restrictive Environment (LRE) requirements of the Individuals with Disabilities Education Act (IDEA), reiterating that learning must continue for all students during the COVID-19 national emergency.”

It should be noted that the Secretary’s report is not a blanket rejection of all IDEA waivers. She does recommend waiver authority in the following two areas to provide limited and reasonable flexibility while schools are closed:

•  Authority to extend IDEA Part B initial evaluation timelines for children aged 3 to 21+. The timelines would begin again “no later than the day on which health and safety factors allow for face-to-face meetings to resume.”  This would include explicit authority for a young child served under Part C (birth-3) to continue to receive services until the evaluation of Part B services is completed – essential protection for these young children.

•  Authority to allow more flexibility for Personnel Development Scholars, which would provide relief for scholars unable to perform their service obligations during the pandemic.

We appreciate all of the advocates who contacted the Education Department and commends the Department for protecting the rights of children with disabilities under IDEA.  This action will now move to Congress. Some national education organizations are redoubling their efforts to convince Congress that broad IDEA waivers are needed. NDSC will be urging Congress to accept the Secretary’s reasonable recommendations and not unilaterally expand the scope of IDEA waivers. Please watch for NDSC’s updated action alert on this topic and keep up the advocacy efforts!

Important May 5th Deadline for SSI and V.A. Beneficiaries

If you plan to claim dependent children (under 18) to receive $500/child to your Automatic Stimulus Payment (Recovery Rebate), the deadline to submit through the IRS website is MAY 5, 2020. SSI recipients who do NOT plan to claim dependent children will receive the full $1200 economic impact payment automatically. The IRS projects that these payments will go out by early May.

The Arc of the United States has developed a FAQ about COVID-19 Stimulus Recovery Rebates resource, in both English and Spanish, that addresses frequently asked questions about COVID-19 stimulus recovery rebates.

COVID-19 Resource Library

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. To help your family during the coronavirus (COVID-19) outbreak, we have gathered and vetted resources that are practical and useful to help you and your family through these unprecedented times.

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 resources recently added to the library and our Parent Webinar Series.

Q&A on COVID-19 and Down syndrome Update – The Q&A on COVID-19 and Down syndrome published by a consortium of national Down syndrome organizations including National Down Syndrome Congress (NDSC), the Down Syndrome Medical Interest Group-USA (DSMIG-USA), Global Down Syndrome Foundation (Global), LuMind IDSC Foundation (LuMind IDSC), National Down Syndrome Society (NDSS), and National Task Group on Intellectual Disabilities and Dementia Practices (NTG). The resource was reviewed by numerous clinicians, advocacy organizations and family members of individuals with Down syndrome, and includes answers to the following general questions:

·  How can I help prevent the spread of the virus?

·  What common symptoms should I look for?

·  What should I consider when it comes to decisions made by, or on behalf of my loved one with Down syndrome?

View the latest versions of the Q&A on COVID-19 and Down syndrome by clicking below.


Q&A ENG ABBR button     Q&A ENG EXT button          Q&A SP ABBR button    Q&A SP EXT

No Discriminating in Health Care Rationing webinar – Presented by NDSC Policy & Advocacy Director, Heather Sachs, in collaboration with Global Down Syndrome Foundation and NDSS, this webinar addresses the concerns of protecting the rights of individuals with disabilities against health care rationing during the COVID-19 pandemic and answer questions such as:

·   What is medical rationing and why is it concerning?

·   What have advocacy groups been doing so far?

·   What protocols are hospitals developing?

·   Why are individuals with Down syndrome considered “high risk”?

·   What are the legal prohibitions of discrimination?

·   What can families do to advocate if their loved one with Down syndrome is hospitalized?

·   How can your local Down syndrome organization get involved?


Take a Deep Breath: IDEA implementation during COVID-19 school closings webinar – Presented by NDSC Senior Education Policy Advisor, Ricki Sabia, discusses guidance issued by the U.S. Department of Education on the provision of services to students with disabilities during coronavirus related school closures. This session also includes frequently asked questions about COVID-19, including questions about parent/student rights, answered by COPAA Legal Director, Selene Almazan.


Discussing the rights and equal medical treatment of people with Down syndrome podcast – Join NDSC President and Medical Director of the Down Syndrome Center of Western PA, Dr. Kishore Vellody, and NDSC Policy & Advocacy Director, Heather Sachs, J.D., on this Apple podcast as they discuss the rights of people with Down syndrome when it comes to obtaining equal medical treatment, particularly during the COVID-19 pandemic.


NDSC Policy & Advocacy Briefing webinar – Hear updates on what’s happening in Washington concerning COVID-19.


Tips for Speech Therapy at Home for Children with Autism – This guide addresses the needs of our children with co-occurring DS-ASD.  It provides useful tips to be used with children with autism and Down syndrome alike and gives details as to how parents can conduct speech therapy interventions at home. It includes ideas for speech therapy activities divided by age groups, including infants & toddlers, pre-schoolers, school-age children, and adolescents.


The George Center Special Offer to NDSC Members – Our partners at the George Center are offering FREE music therapy sessions throughout this period of social distancing to all NDSC members. New sessions for young children, teens, young adults, and older adults are added weekly.


Support the NDSC

GivingTuesdayNow 2020

Support NDSC on #GivingTuesdayNow, a global day of unity to take place on May 5, 2020, as a response to the unprecedented need caused by COVID-19.

DONATE #GivingTuesdayNOW

NDSC Soiree of Stars Gala – Save the Date

On October 22, 2020, NDSC will host our first-ever National Down Syndrome Congress Soiree of Stars Gala in Atlanta, GA. We hope that you will save the date and make plans to join us as we shine a light on individuals, organizations, and businesses that have made an impact in the Down syndrome community.