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Mission Moment 

with the NDSC Executive Director

All Kinds of Heroes Golf Classic 

Even if you can’t make it to Bear’s Best Atlanta on April 24, you can still get in on the fun!

This year our golf Classic silent auction is going digital so that everyone has a chance to bid on items like

• A Dormie Network Membership
• UGA Back-to-Back Champion swag
• A Tyler Matzek signed baseball and
• A Kyle Petty Driving Experience Package

The silent auction will open on April 17th. Visit the NDSC Golf Classic Facebook page for updates and to catch a glimpse of other silent auction items, then on the 17th check out ALL the items in the digital silent auction site.

51st Annual NDSC Convention

Did you know that attendees to the 51st Annual Convention this July 20-23 get discounted tickets to the Orlando theme parks? Deals include Disney World, Universal Studios, Sea World and MORE. Half-day and evening tickets are also available. 

Register before April 30th to secure Early Bird pricing and to reserve your theme parks tickets!

Interested in learning about special education and rights? Check out our two single-day conferences, Educators Conference and Wrightslaw Conference.

Welcome Newest NDAC Member

NDSC is excited to welcome Michigan’s Petra Mark to the National Down Syndrome Advocacy Coalition (NDAC)! With the addition of Petra to NDAC, we now have only 17 states needing Self-Advocate Representation. Let us know if you or someone you know is a person with Down syndrome who can represent one of our missing states. Learn more and complete an easy online application at  NDAC FAQ & ONLINE APPLICATION or contact Jawanda Mast at jawanda@ndsccenter.org.

Advocacy Training Boot Camp 

Want to learn how to be a more effective advocate? Don’t miss Our 6th Annual Advocacy Training Boot Camp, Friday morning, July 21, 8:00 – 11:30 AM. Advocacy Training Boot Camp, sponsored by the Association of University Centers on Disabilities, is free with convention registration. We have a wonderful agenda planned to give you the tools you need to be an effective advocate. No experience? This is for you! Registration for this session is encouraged but not required.

Wils Van Bergen 

On April 8th, Wils Van Bergen will celebrate his four-year work anniversary as an Office Services Clerk at ShuffieldLowman Attorneys and Advisors in Orlando, FL. Wils loves “having a job, having good coworkers, and earning my own spending money.” Wils says he spends his money on “My fiancé Eleana and on my favorite X-Box and PlayStation Games.” Human Resources Manager Maureen McArdle says, “We are proud to support Wils and his efforts in raising awareness for Down Syndrome. He is a very loyal and dedicated employee, and everyone looks forward to seeing him. He always has a smile on his face and is willing to do whatever is asked of him.” Thank you ShuffieldLowman for supporting individuals with Down syndrome through employment and thank you Wils for sharing your story!

New Accrediting Agency for Inclusive Higher Education 

In a major development for postsecondary students with intellectual disability (ID), a new accrediting agency has been incorporated, the Inclusive Higher Education Accreditation Council (IHEAC). Launched by the National Coordinating Center, Think College, the new nonprofit agency will accredit higher education programs for students with ID, improving quality and accountability. In another milestone, an accreditation team conducted a site visit at the Western Carolina University UP program, the first college program seeking accreditation by the new agency. NDSC Senior Policy Advisor, Stephanie Smith Lee participated in the visit and is the president of the IHEAC.

Heather Hancock 

Our featured NDAC Member, Heather Hancock Blackburn, 39 of Moore, Oklahoma, is a fierce advocate for the inclusion of individuals with Down syndrome. She is very proud of her advocacy work with her local Down syndrome group, the Down Syndrome Association of Central Oklahoma, to make the world a better place for people with Down syndrome.

Website Feature

Research Opportunities

One of the ways experts learn more about Down syndrome is through research of individuals with the condition. These research opportunities are voluntary for families, and their purpose is to provide information that helps professionals set goals, objectives and policy, as well impact the future of individuals with Down syndrome.

Position Statement on Guardianship for Individuals with Down syndrome 

NDSC is excited to announce our newest position statement on Guardianship for Individuals with Down syndrome. Through this position statement, NDSC recognizes that the guardianship system needs major reform to ensure that people with Down syndrome retain, to the greatest extent possible, all their civil rights and constitutional due process protections and to ensure that a less restrictive alternative is available should it meet a person’s needs. Given this, NDSC believes less restrictive means of decision-making support should be considered before the use of guardianship is considered as an option. With this position statement, NDSC furthers its commitment to disability rights and ensuring that people with Down syndrome have the freedom and opportunity to make their own choices.

NDSC Urges Social Security Administration to Eliminate Food from Support and Maintenance Calculations 

On February 15, 2023, the Social Security Administration (SSA) published a proposed regulation that would take a step toward updating outdated rules for the Supplemental Security Income (SSI) program. The proposed regulation would exclude food purchased by others from being considered for the purposes of SSI. The NDSC Policy and Advocacy Team submitted comments to the SSA in support of the proposed changes to remove food from the calculation of In-Kind Support and Maintenance (ISM).

The deadline to submit public comments is April 17, 2023.  If you or a family member would like to submit your own comments, please use this link from Justice in Aging for a pre-filled template to submit comments: tinyurl.com/ssiregulations.

Upcoming Events

Apr. 17-19 – 2023 Down Syndrome Advocacy Conference | In-Person at Hilton, Crystal City Reagan National Airport with the National Down Syndrome Society, Down Syndrome Affiliates in Action, LuMind IDSC Foundation, GLOBAL, and GiGi’s Playhouse, Inc.

Apr. 24 – 7th Annual All Kinds of Heroes Golf Classic | In-Person

Apr. 17 – Ages & Stages Webinar |  T3: Tips to Promoting Independence at an Early Age with Dr. Solandy Forte

May 17 – Quarterly National Down Syndrome Advocacy Coalition (NDAC) Call

May 22 – Ages & Stages Webinar | T4: Planning, Preparing, and Promoting Inclusion within the School Setting with Dr. Solandy Forte

July 20-23 – 51st Annual Convention ~ Dreams Do Come True

Aug. 26 – 2nd Annual Big Game Ball

Our Contact Information
National Down Syndrome Congress
30 Mansell Court, Suite 108
Roswell, GA 30076
800.232.6372
http://ndsccenter.org

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