NDSC E-NEWS ~ December 2019


Mission Moment

With NDSC Executive Director, David Tolleson

 This year is rapidly winding down.  Are you someone who makes New Year’s resolutions?  If so, please put participation in the 2020 Census near the top of your list.  Why?

1. Not being counted could hurt your family member with Down syndrome.  The census is used to determine funding for supports for people with disabilities, as well as how those funds are distributed to your state and community.  Historically, people with disabilities have been under counted, meaning less money for the programs their family member need – or will need – to live and work in the community.

2. The United States is NOT a democracy.  No matter how often the media or politicians say it, it’s not true.  The United States is a republic and the census determines how many representatives your state gets in Congress.  If you, or your family member with Down syndrome, are not counted, it will negatively impact your representation.

3. It is required by law.  A census must be taken every 10 years, per the U.S. Constitution.  Everyone who lives within our borders – citizen or not – is required to participate.  Failure to do so is a Federal crime.

Understandably, one of the most common reasons that people do not want to take part in the census is concern about who will have access to their information.  Learn more about the Census Bureau’s privacy safeguards by clicking the video below.

Census Safe Info

While the Census Bureau will begin counting in remote areas in January, Census Day is observed nationwide on April 1st.  By this date, every home will receive an invitation to participate in the 2020 Census.  Once the invitation arrives, you should respond with information for your home online, by phone, or by mail.  Later in the month, census takers will begin conducting quality check interviews to help ensure an accurate count.  In May, census takers will visit the homes of those who haven’t responded.  People who live in Puerto Rico, U.S. Island Areas, very remote areas (such as parts of northern Maine and Alaska), areas that are experiencing a natural disaster, and group living arrangements (on-campus student housing, military bases, health care facilities, etc…), will have slight differences in their timelines.

The Census Bureau will deliver its final count to the President and Congress next December, as required by law.  By March 31, 2021, the Census Bureau will send redistricting counts to the states, which will be used to redraw federal and state legislative districts based on population changes.

As a National Partner of the U.S. Census Bureau, the NDSC is committed to making sure that everyone with Down syndrome receives the services and supports they need to live their best lives, and that your family’s voice is heard.  Thank you for joining me in making this important resolution.

Happy New Year to you and yours!



Year End banner

With your help, 2020 will be another year of even more expansion.  Please consider giving a little something extra to NDSC for the New Year.

Year End Donation button

COE LogoBecause of the incredible support NDSC has received in 2019, we have grown by leaps and bounds.  We have expanded our reach to serve more rural and underserved communities and to have had a greater impact on the Down syndrome community than ever before.

In its first year, NDSC’s Center for Outreach & Education took part in 14 rural outreach and informational conferences in 13 cities in the United States, Colombia, Dominican Republic, and Mexico.  We are reaching more people where they are, as over 3,000 people have attended and viewed recordings of our free parent webinars in 2019.

If you missed any of these informational sessions covering topics such as Supported Decision Making, Grassroots Advocacy, or the highly popular Decline in Skills webinar, presented by Dr. Brian Chicione, you can watch them on your time!

Did you know that you can access our recorded webinars and watch them when it’s convenient for you and with captioning? Visit our Channel and find something for all ages and stages.

Tenemos una selección de seminarios web presentados en español, incluyendo comunicación, sexualidad, regresión y más.

                                           Click to Parent Webinars_ENG                       Parent Webinars_SP_SQ

Call for SA Speakers The Youth & Adults Conference is the heart and soul of the NDSC Convention.  It is the place where self-advocates, those with Down syndrome 15 years of age or older, come together to meet up with old friends, to make new friends, and to learn from each other.

The Youth & Adult Planning Team is looking for self-advocates who have a special skill, talent, or message that they want to share during the Youth & Adult Conference with the other 350-plus self-advocates who will be in attendance.  Do you have a new dance move that you learned or perfected?  Would you like to lead a group in a craft, activity or game?  Do you have an accomplishment that would be inspirational for your peers to hear about?

If you have an engaging activity or an inspirational message we invite you to submit a proposal to share your talents, experiences, and perspectives with your peers during the Youth & Adult Conference sessions.

Self-advocates interested in presenting during the 2020 NDSC Youth & Adult Conference should submit proposals by 5:00 PM, Friday, January 31, 2020.

Submit Proposal

2020 Call for SpeakersWhat makes the NDSC Convention different than any other convention? it is the educational, empowering, and inspirational information shared by world-renowned experts with convention attendees.

Each year convention attendees choose from a multitude of presentations on topics such as transition planning, behavior, advocacy, and much more.  Do you know of a speaker who has a dynamic, engaging, presentation that you think would make a great workshop or pre-conference session at the 48th Annual NDSC Convention? If so, please invite them to submit an NDSC Workshop Proposal for consideration.  The General Workshop Speaker proposals deadline is January 3, 2020, so please act soon!

                                                                        Submit Proposal


2020 Call For Speakers_SPPor favor complete la propuesta a continuación. Una vez que envíe, recibirá un correo electrónico confirmando su envío. ¡Gracias! Fecha límite de envío: 3 de enero, 2020. Los invitamos a enviar sus propuestas para posibles ponencias durante la Convención Anual del NDSC 2020 en la ciudad de Nueva Orleans. No todas las solicitudes serán aceptadas, y serán aprobadas por el Comité de Programación de la Convención (CPC). Cada año el NDSC recibe un gran número de propuestas; de hecho son más de las que se pueden aceptar. Los talleres son de 90 minutos, incluido el tiempo para preguntas y respuestas. Buscamos conferenciantes con un amplio conocimiento sobre el síndrome de Down y que tengan facilidad para comunicarse con las familias.

   Submit Proposal_SP2

Registration Opens

We are already planning for a revitalized NDSC Convention in 2020, with a new found energy and excitement that only New Orleans can provide, a new digital registration system, and 4 full days of pre-conference programs, medical and educational conferences, healthcare and research rallies, roundtables, and workshops where self-advocates, families, and the professionals who serve them will receive accurate and up to date information.

We hope that you are planning to join us for our 48th Annual Convention in New Orleans, Louisiana, June 25 – 28, 2020. The 4 days of the convention are comprised of specialized conferences and programs with something designed for everyone; individuals with Down syndrome, self-advocates, parents, siblings, professionals, and community advocates.  Look for more information soon on our website with convention registration and hotel block details, deadlines, and guides to getting the most from the jam-packed weekend.


College Fair Save teh Date

NDSC and Think College present the 2nd annual College Fair!  This is an opportunity for self-advocates and their families to learn about the postsecondary education opportunities available, and for colleges and universities to showcase their postsecondary programs. Last year 20 colleges participated in the 2019 College Fair.  We anticipate even more participation this year.

NDSC Logo                Think Colleg Logo

2020 DPS Logo

Join NDSC on Capitol Hill This Spring!

Join us March 23 – 25, 2020 for the Disability Policy Seminar.  This one of a kind seminar offers the opportunity for passionate advocates, self-advocates, experts, and professionals in the disability community to come together and learn about key issues that affect them most, and is your chance to make an impact!

The event is packed with informative sessions from experts and provides opportunities to discuss key issues with others from your state. After two days of training and learning, attendees start day three with a breakfast kickoff, followed by a day on Capitol Hill for meetings with their Members of Congress.

For more information about the event visit disabilitypolicyseminar.org

Facebook Birthdays

Thank you to all who invited us to their birthday parties in 2019!

We are so grateful to all who hosted Facebook fundraisers to benefit NDSC this year.  Together, our members, volunteer leaders, staff, and friends of NDSC raised nearly $16,000.00 that will fund new programs and projects in 2020.

A special shout out to our top fundraisers who each raised $321 or more through Facebook fundraisers: Norman Palmer, Tamara Jackson Pursley, Carolina Elias, Sharon Davis Kosboth, Jay And-Heather Harvey, Zach Carroll, Annette Manuel Irvello, Marilyn Tolbert, Thomas G. Luciani, Kathleen Kupris, and Niki Michaelson Baumer. 

Facebook fundraisers are not just for birthdays.  You can start a fundraiser at any time.  If you would like to support the work of NDSC through a Facebook fundraiser it is as simple as a click!

Start a FB fundraiser