Thursday, March 28, 2013

NDSS, NDSC and other advocates meet with US DOJ re: Robert Ethan Saylor

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Contact: Julie Cevallos                           
National Down Syndrome Society                       

National Down Syndrome Society Meets with the U.S. Department of Justice and other Representatives of the Down Syndrome Community

Meeting focused on the need for national law enforcement and first responder training guidelines, to be implemented nationwide, regarding individuals who have Down syndrome.

Washington, DC – March 27, 2013. The National Down Syndrome Society (NDSS) attended a meeting yesterday with the U.S. Department of Justice (DOJ), along with National Down Syndrome Congress (NDSC), the Kennedy Krieger Down Syndrome Clinic Director Dr. George Capone, representatives from our Frederick County, Maryland affiliate, Family Resource Information and Education Network for Down Syndrome (F.R.I.E.N.D.S.), and representatives of the Saylor Family. With the Robert Ethan Saylor case high on their watch list, the Community Relations Service (CRS) of the U.S. Department of Justice initially reached out to F.R.I.E.N.D.S. to offer their services, which resulted in yesterday’s meeting. Robert Ethan Saylor died in Frederick County, Maryland on January 12, 2013.

NDSS is determined to see to it that necessary actions are implemented to ensure tragedies like this never happen again. “Our hearts and sympathies go out to the family and friends of Robert Ethan Saylor.  At NDSS, we envision a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities. Ethan deserved to be a welcomed member of his community. We join the rest of the Down syndrome community in their sadness and outrage as we act for positive change,” says NDSS Vice President of Advocacy & Affiliate Relations Sara Weir. 

Yesterday, the discussion centered around the need for national law enforcement and first responder training guidelines regarding individuals with Down syndrome to prevent another tragedy of this nature happening again in the future, in any town in the United States.

“The ultimate goal of this collaborative effort will be to create a training program that can be easily accessed and flexible enough that all law enforcement and first responders nationwide can participate,” says NDSS President Jon Colman.

NDSS wants to see national law enforcement and first responder guidelines for the fair and safe treatment and respect of people with Down syndrome developed and implemented across the country as soon as possible. It is vitally important that these professionals understand the nature of Down syndrome as a genetic condition, medical and behavioral queues they can look for, and safe ways to avoid conflict and harm. 

About NDSS
The National Down Syndrome Society is a nonprofit organization representing the approximately 400,000 Americans who have this genetic condition. NDSS is committed to being the national advocate for the value, acceptance and inclusion of people with Down syndrome. To learn more about NDSS, visit

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