The leading human rights organization for all individuals with Down syndrome.

National Down Syndrome Society
8 E 41st Street, 8th Floor
New York New York 10017
[email protected] 

NDSS Takes Multiple Actions to Prevent Tragedies Such as the Death of Robert Ethan Saylor from Occurring in the Future

In the aftermath of the tragic death of Robert Ethan Saylor and the investigation therein, our hearts and sympathies continue to go out to the Saylors, their friends and family, and the community at large. NDSS is determined to see to it that necessary and comprehensive actions are implemented to ensure tragedies like this never happen again.

NDSS is working with our local affiliate in Frederick, MD, the Family Resource Information and Education Network for Down Syndrome (F.R.I.E.N.D.S.), which was founded by Patti Saylor, Ethan’s mother. While NDSS cannot interfere in the ongoing investigations, we are here to support the Saylor family, F.R.I.E.N.D.S. and the community.

Many have noted that this incident could easily be repeated anywhere, and as the national advocate for the value, acceptance and inclusion of people with Down syndrome, we are doing everything possible to ensure that this never happens again, and what has happened to Ethan is not taken lightly. It is vitally important that professionals in law enforcement and first responders understand the nature of Down syndrome as a genetic condition, the medical and behavioral cues they can look for, and safe ways to avoid conflict and harm – so that people with Down syndrome can be treated with the respect that they deserve and that we demand. We expect law enforcement to treat people with Down syndrome with respect as citizens of our country, and members of welcoming communities.  

Following our meeting with the US Department of Justice this week, and based on feedback and input from the Down syndrome community, NDSS is taking a proactive, comprehensive approach to prevent another tragedy of this nature that includes all of these actions below:

  • Support F.R.I.E.N.D.S., the Saylor family and the need for an independent inquiry into the case of Robert Ethan Saylor to give the community an accurate, detailed report of the events that led to his untimely death
  • Roll-out NDSS Down syndrome guidelines for law enforcement/ first responders as an immediate resource, which will include best practices for affiliates and families about how to use the guidelines in their local communities to educate local law enforcement/ first responders
  • Convene and facilitate meetings between Down syndrome organizations, self-advocates, affiliates and community leaders with local law enforcement/first responders to establish a dialogue about Down syndrome, the medical and behavioral queues of Down syndrome, and safe ways to avoid conflict and harm
  • Work with the National Down Syndrome Congress; F.R.I.E.N.D.S.; Kennedy Krieger Institute, an internationally recognized institution dedicated to improving the lives of people with Down syndrome and other disabilities;  and the Saylor Family on a national web-based training module for law enforcement and first responders to be implemented as a long term solution and ensure that tragedies of this nature do not occur again

We invite the community to be a part of our short term and long term efforts to address this tragedy. We are committed to demanding action and preventing tragedies like Ethan’s death from occurring in the future. 

  • Buddy Walk
  • NDSS Yourway
  • NDSS DS-Ambassadors