NDSC E-News ~ August 2019

Mission Moment
With NDSC Executive Director, David Tolleson 

For most of the country, August means back to school.  Because of that, it’s natural to focus on why inclusion is so important.  Regardless of how many chromosomes we have, we all do better when we’re included – in school, work, faith communities, and social settings.  And it’s not just individuals who benefit.  Our society becomes stronger when everyone is included, when everyone can contribute based on their gifts, and when we can all celebrate both our commonalities and differences.

The film “The Peanut Butter Falcon”, which is currently in theaters, is centered on themes of inclusion and self-determination and the belief that families can form – and flourish – when people are given the opportunity to get to know one another.  We recognize that, sadly, inclusion is neither universally available nor equally applied in every setting.  However, we are committed to advocating for the laws and policies that support the right for individuals with Down syndrome to live their best lives, included and valued in the communities where they live, work and play.

Thank you for your support as we work to make the world a better place for all.

Best wishes,



As most schools are now back in session it is important that families have access to resources that support inclusive education, that will help families when working to formulate their child’s IEP, and to introduce the technology tools available.

We have compiled a list of back to school resources to help when looking for information on inclusion, as it relates to policy and research, Individualized Education Programs (IEPs), and technology tools and Universal Design for Learning (UDL) resources.  We have also included a list of social media pages that you may enjoy following for practical advice from other parents and advocates.

We believe this list is a good blend of policy, research, and practical tips. While the provided information can be very helpful, it is important to remember that the most successful inclusive experiences are usually based on building strong and positive relationships with administrators, educators, and other school personnel, to the greatest extent possible.

Inclusion Resource: Taking the Alternate Assessment
Does Not Mean an Education in a Separate Setting

If you have been told, or have concerns, that your child cannot be educated in the general education classroom because he or she takes an alternate assessment a brief published by the TIES Center, which is co-authored by Ricki Sabia, NDSC Senior Education Policy Advisor and TIES Center parent liaison, and Dr. Martha Thurlow, Director of the National Center on Educational Outcomes (NCEO) and Ties Center Advisor, may be a useful resource to you.  The brief can be downloaded by clicking on the link on the bottom right side of the TIES Center home page.

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On The Road Again

NDSC One-Day Summit in Central Nebraska  

This one day summit will include sessions on potty training, behavior, meaningful inclusion, DS-ASD 101, building and implementing IEPs for success, and technology.

If you are in the area you will not want to miss these sessions hosted by top guest speakers such as:

Jeanne Doherty, current Family Support Specialist for the Massachusetts Down Syndrome Congress,  Board President for Alternative Services, Inc., and Board President of the Down Syndrome-Autism Connection.

Kate Dougherty, proud wife, and M-O-M of 4 children -1 of which ROCKS his extra chromosome. Kate is the Vice President of the NDSC Board of Directors and the President and Founder of Down Country, a rural non-profit awareness and education initiative operating under the fundamental principles that: Every Child is a Gift! Every Child Can Learn! & Every Child Learns Differently! Kate is a national speaker, consultant, and currently co-hosts a local radio show “#Every1 talking about #Everything”, on WGEM 105.1FM, on Sunday mornings.

Julie Harmon,  proud parent of two sons with Down syndrome. Julie is the Inclusion Coordinator at the University of Colorado, Colorado Springs, a Board Member of the Colorado Springs Down Syndrome Association, and former Board Member of the National Down Syndrome Congress. NDSC. Her oldest son, Nick, attends college at the University of Colorado, Colorado Springs and is starting his senior year this fall. Julie’s youngest son, Noah, graduated from high school in the Spring and works at 24 Hour Fitness and loves everything about fitness.  Julie advocates for inclusion for people with disabilities in all aspects of life to someday realize a world with equal rights and opportunities for everyone.


DSDN Rockin 2019

We are proud to support the Down Syndrome Diagnosis Network 2019 Rockin’ Moms Retreat in Nashville, TN, September 6-7.  If you will be joining us in Nashville, stop by and see us in the vendor hall.  You can also see NDSC Programs and Partners Director, Tamara Pursley, and NDSC Policy and Advocacy Director, Heather Sachs, who will be presenting workshop sessions.


Have You Heard?
The NDSC 48th Annual Convention Will Take Us to the Big Easy in 2020!
NOLA Save the Date Banner

Look for more information in the coming weeks
Registration will open March 2020

More NDSC Resources – The NDSC Family Care Toolkit

When an emergency happens or a vacation and respite are needed, it is essential to have important information in one place for a family member or caregiver to step in to care for a loved one with Down syndrome.  The NDSC Family Care Toolkit, created with the support of the Global Down Syndrome Foundation, is a toolkit that will provide all important information, in one place, when a temporary caregiver is needed.

The Family Care Toolkit has a complete Parent guide as well as 6 sections to include information about Home, Family, Daily Living, Medical Information, Resources, and Emergency- including everything from how to use remotes to emergency medical consent forms.

The NDSC Family Care Tool Kit can be downloaded by visiting the NDSC website or contact us at info@ndsccenter.org for a printed copy and notebook.  Print copies of the Family Care Toolkit are available to NDSC member families (one per household) at no charge and are $10 for non-members.

Our Community

Oct is DS Awareness Month Banner

Down Syndrome Awareness Month is just around the corner – This October NDSC will be partnering with organizations across the country for Down Syndrome Awareness Month.  Our partner companies will be helping raise awareness as they participate in Dine-Out and Dollar Days with NDSC!  If you know of a company that would like to join us in celebrating during the month of October, please email rhonda@ndsccenter.org.

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Arc Survey

The Arc wants to hear from you!  This mission of The Arc is one of promoting and protecting the human rights of people with intellectual and developmental disabilities and actively supporting their full inclusion and participation in the community throughout their lifetimes.

Our friends at The Arc want to hear your perspective about how, together, we can all create a world where the disability community receives the support, services, and care they need and the respect they deserve.  They are asking for your input by completing an online survey. The survey should take no more than 30 minutes to complete, responses are anonymous and the survey can be accessed in both English and Spanish.

Should you have any issues with the survey please email Shakir Cannon-Moye at scannonmoye@communitywealth.com.

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