NDSC E-News ~ January 2021
Mission Moment
with Executive Director David Tolleson
Change is in the air as we begin a new year! The long-awaited COVID-19 vaccines are finally being distributed – albeit not as fast as we’d like – offering the hope of future hugs, joyful reunions, and a world getting back to work. Along with our valued national partners, NDSC is working on comprehensive, updated COVID-19 information for you and your family. In the meantime, because so many of you are calling with questions about the COVID-19 vaccine, we have prioritized the development of a COVID-19 Vaccine FAQ sheet. Look for it to release early next week.
We will be rolling out our new Ages & Stages program soon with new resources and webinars for each age and stage. We continue to work on this year’s NDSC Annual Convention and will be sharing more on that exciting event in the next few weeks.
As you know, change is also in the air in Washington, D.C. Working alongside our bipartisan Policy Advisory Council, NDSC’s Policy Team – the best Federal disability advocacy team in the nation – has developed a legislative priority list for the 117th Congress. That document is currently being reviewed by our Board of Directors and will be available to you by the end of the month. Of course, NDSC is a grassroots organization and needs you to affect meaningful change. If you aren’t a member of our NDSC National Down syndrome Advocacy Coalition (NDAC), I hope you’ll visit our website to learn more about the benefits to members. Membership is free and identifies you as someone willing to take a little time to make a big difference.
One thing that hasn’t changed is that the NDSC is here for you. Every day our staff goes to work focused on you and your family. We love hearing from you and helping families like yours, so I hope that you’ll call (770-604-9500) or e-mail (info@ndsccenter.org) us anytime if we can be of service or if you just want to talk. It’s free, and it’s what we’re here for!
We’re looking forward to talking with you soon!
We are thrilled to introduce our 2021 All Kinds of Heroes Golf Classic Grand Marshal, Steven Joe! Steven is 24 years old and has been an avid golfer since he started competing in Special Olympics golf at age 12. Steven and his family live in the Atlanta area and have been part of the NDSC family since shortly after Steven was born.
Steven invites you to join us for the 4th Annual NDSC All Kinds of Heroes Golf Classic to be held on World Down Syndrome Day, Sunday, March 21. We can’t wait to be back at the fabulous Bear’s Best Golf Course in Suwanee, GA, for this year’s tournament.
Not in Atlanta? Not a problem. Players can join us remotely from the course of their choice. All that is required is that the course is an 18-hole, par 70, or higher golf course, where players have the option to register as a foursome or individual qualifies for play. Remote player registration cut-off is March 19 to participate.
More information about the tournament, player’s fees, and sponsorship can be found on our website.
NDSC MEMBER COMMUNICATION SURVEY
We understand that everyone receives information differently and through many channels of communication. We are looking to our members to tell us how they receive, and prefer to receive information so that we may understand how to serve you better.
We want to hear your feedback so that we may communicate in ways that are most useful to our members. The survey should take less than 5 minutes to complete. Your answers will be anonymous unless you choose to add your name at the end of the survey. We appreciate your time and feedback.
Whether you or someone you know are celebrating the birth of a child or anticipating their arrival, NDSC is here with the resources and support that you may be seeking. Raising a child with Down syndrome is a journey with unique challenges and experiences, but rest assured, you are not alone. We are here for you every step of the way with the most up-to-date and accurate resources.
We are happy to release the recently updated NDSC digital New Parent Packet. This packet provides information to help new parents better understand Down syndrome, expectations and medical issues, the important role of siblings, early intervention and services, your child’s education, and much more with the invaluable section, “What Parents Wish They’d Known,” written for new parents by parents.
Our Programs Team is hard at work enriching your NDSC website experience. Soon we will launch Ages & Stages, with more accurate and up-to-date information and a series of webinars for each age or stage.
The NDSC Policy Team in Action
As you can imagine, our Policy and Advocacy team has been working overtime to engage with the Biden transition teams to help set policy priorities and plan for the Administration change. They have been advocating for all people with intellectual and developmental disabilities (IDD), their caregivers, and support personnel to be given priority in vaccine allocation and ensure that vaccine allocation is done in an equitable, accessible way, and for State and Local COVID-19 Education Funding.
NDSC Senior Advisor Stephanie Smith Lee was invited to attend a stakeholder meeting on January 12, with Dr. Miguel Cardona, President Biden’s nominee for Secretary of Education, and other leaders in the disability community. Dr. Cardona discussed his previous work to expand services to students with disabilities and the importance of ensuring that schools are an inclusive environment academically, socially, and emotionally. Dr. Cardona closed the session with remarks about the need to build teachers’ and systems’ capacity to educate all students and his commitment, if confirmed, to work with the new administration to create a culture of inclusivity.
To learn more about the advocacy efforts and the other work our Policy team is doing, read the most recent issue of the Policy & Advocacy Newsline.
If you would like to learn more about how you may become a stronger advocate for people with Down syndrome, we invite you to join National Down Syndrome Advocacy Coalition (NDAC). NDAC is an NDSC grassroots advocacy service designed to educate individuals with Down syndrome, their families, and other allies about policy issues. Members will receive the advocacy tools and techniques they need to engage with legislators to advocate for change effectively.
Call for Y&A Speakers
The Youth & Adults (Y&A) Conference Team is seeking proposals from anyone wishing to present a workshop or spotlight at the 2021 NDSC Convention. We are looking for presenters who can create an educational, empowering, and inspiring program for the more than 350 self-advocates (individuals 15 and older with DS) attending the Y&A Conference. our planning team has identified some topics to consider presenting on including stress relief, aging, healthy habits, self-protection, career advice, and so many more! All proposals are due by Tuesday, February 9, 2021.
Awards Nominations Deadline Extended
Each year we honor the individuals and organizations whose achievements, service, or contributions to the Down syndrome community are exemplary. If you know of an individual or organization that you feel is deserving of consideration for one of the 2021 NDSC awards, please nominate them through our online nomination form found on the NDSC website.
To learn more about the award categories or to access the Nomination Form visit our website. All nomination forms, along with supporting materials, should be submitted by midnight, January 24.
In the Community
Vanderbilt University Study
Researchers at Vanderbilt University are currently seeking primary caregivers of individuals who have complex communication needs. The goal is to gather primary caregivers’ perspectives on the training received (if any) to support and enhance their child’s communication skills. By gathering information and variables that lead to positive and negative experiences, they hope to make recommendations and outline key elements to minimize experiences that may be contributing to high levels of communication system abandonment and decrease the impact these systems may have on the family.
The survey will take approximately 20-30 minutes to complete. All responses are confidential. Only the principal investigators will have access to the completed surveys. For your convenience, the survey is set up to allow you to stop and return to it at any point (by clicking “save and return later”). There is no compensation for participation in this survey.
Questions about this research study should be sent to Emily Sheridan at emily.sheridan@vanderbilt.edu or Dr. Alexandra Da Fonte at alexandra.dafonte@vanderbilt.edu. For additional information or to report concerns, please feel free to contact the Vanderbilt University Institutional Review Board Office at 615.322.2918 or toll-free a: 866.224.8273.
DSMIG Town Hall Meeting February 6
You are invited to join the Down Syndrome Medica Interest Group (DSMIG-USA) on February 6, from 11:00 AM to 12:30 PM, for a Town Hall Meeting to discuss race and other social determinants of health. Panelists for the Town Hall Meeting include:
- Tomar Pierson-Brown, Associate Dean for Equity and Inclusive Excellence at University of Pittsburgh School of Law
- Roxanne Hoke-Chandler, M.S., Family Engagement Specialist at the Family and Community Engagement Team of the Federation for Children with Special Needs
- Katia D´Artigues, Journalist
- Yaneth Maldonado, Family Resource Navigators
- Chief William “Bill” Scott, San Francisco Police Department
This event is free but does require registration. For more information, visit the DSMIG-US website.