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] 

An Update on NDSS Actions in Response to the Death of Robert Ethan Saylor

Action Update from NDSS & NDSC

NDSC and NDSS continue efforts to help ensure the safety of the Down syndrome community and pursue justice for Ethan Saylor and his family.

We continue our efforts to work with the Civil Rights Division of the Justice Department.  At our second meeting  with the Justice Department, held  on April 22, representatives were present from the Civil Rights Division, the Criminal Division, and the Special Litigation Division. ADA compliance officials, trial attorneys and special advisors participated, as well. We are confident that the Justice Department is looking into the matter.  They do not make public statements about investigations.

On April 26, we met with several divisions of the Justice Department along with representatives of other disability groups to discuss the strategic plan of the Civil Rights and other divisions of the Justice Department.  Our statement focused on the need for training of law enforcement personnel to be able to diffuse situations in which they come in contact with an individual with a disability, who may not respond in a way that the personnel are familiar with or have seen before.

We have also been in contact with the Maryland State police, the Maryland State Prosecutors office and the Maryland Attorney General’s office.  We are consulting with the Saylor family attorney to determine our best course of action in pursuing these agencies.  

In preparing our training materials, we have asked for input from Down syndrome affiliates.  We are also meeting with other disability  organizations who have developed similar materials.  



NDSS and NDSC want to see justice served in Robert Ethan Saylor’s case and increase awareness and accountability by police departments across the country to prevent another tragedy from occurring.

To address the civil rights violation in Ethan’s case, NDSC and NDSS, with F.R.I.E.N.D.S. of Frederick County and Ethan’s mother, Patti Saylor, met with the US Department of Justice, Office of Civil Rights on Monday, April 22. Our organizations will continue to demand an independent inquiry as we have done to date. The DoJ remains deeply concerned about the situation. We are confident that our efforts will yield a positive outcome and we will continue to meet with the DoJ, especially in light of recent developments. We will post updates as they become available.  

Our organizations also believe that training materials for police departments across the country will enhance efforts to prevent another tragedy through education and better understanding.  NDSC and NDSS are developing and disseminating training materials for law enforcement and first responders that will address specific health and behavioral concerns associated with people with Down syndrome.  If individuals or affiliates would like to share information to be included in these materials please email [email protected].

NDSS and NDSC will also co-host a town hall meeting on Tuesday, April 23 at 12:00 pm ET.  All are encouraged to attend to hear more and attendees will have the opportunity to voice questions and concerns. You can join the Town Hall by dialing 1-877-410-5657 and using the following passcode: 69126.

As we continue our efforts, we encourage advocates to sign the petitions at and    We will continue to provide updates as they become available.


NDSS Actions in Response to the Death of Robert Ethan Saylor

Since the release of our NDSS comprehensive plan regarding the death of Robert Ethan Saylor, NDSS remains committed to ensuring necessary actions are implemented to ensure tragedies like this never happen again. We continue to work with the Saylor family, the family's attorneys and 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, as we enforce our plan.

As a follow up from our call for an independent inquiry, NDSS issued letters to the US Department of Justice Civil Rights Division and Department of Maryland State Police calling for an independent investigation.

We also thank F.R.I.E.N.D.S. for their public statement about the Ethan Saylor case, which keeps the community on the same page regarding our collaborative efforts. We will continue to work with NDSC and F.R.I.E.N.D.S. during the implementation of our plan.

We will continue to keep you updated on further developments. If you have specific questions, please contact us directly at [email protected] or 800-221-4602. 

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