People with intellectual and developmental disabilities (I/DD) are much more likely to have encounters with law enforcement and first responders, yet are also more likely to have communication difficulties that can lead to misunderstandings, sometimes with tragic consequences. Following the death of Ethan Saylor in 2013, discussed below, NDSS played a key role in the passage of the law enforcement training bill in Maryland and has been working with other stakeholders and the US Department of Justice (DOJ) Community Relations Service to develop the new DOJ Intellectual & Developmental Disabilities Awareness Training for Law Enforcement. NDSS is continuing to advance legislation and training opportunities similar to Maryland’s across the US.

Ethan Saylor Alliance

Ethan Saylor, a 26-year-old man with Down syndrome, died tragically on January 12, 2013, while being forcibly removed and restrained by off-duty Frederick County, Maryland, police officers at a movie theater. Ethan and his support staff had just watched a movie and Ethan wanted to watch it for a second time but had not purchased a second ticket. The confrontation happened when Ethan’s support person went to get the car.

The death of Ethan Saylor in Maryland spurred action at the local and state levels to review and develop state-of-the-art training programs, develop community and relationship-building efforts, and, most importantly, include self-advocate educators in these pieces of training across all sectors. On September 17, 2013, Maryland Governor Martin O’Malley issued an executive order establishing a new commission, the Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities. This Commission was tasked with evaluating the current training received by people that interact with the disability community and developing and issuing recommendations about the types of training standards the state should adopt to educate individuals in positions of authority, particularly those in public sector positions. This Commission was chaired by Dr. Tim Shriver, Chairman of Special Olympics, and included former President and CEO of NDSS,. The Commission’s final report was issued in December 2015.

In February 2015, a bill (SB 853) was introduced in the Maryland State Senate to establish a training program for Maryland law enforcement named in honor of Ethan Saylor. The bill passed in May 2015, establishing the Ethan Saylor Alliance for Self-Advocates as Educators in the Maryland Department of Disabilities to increase training for members of law enforcement regarding the needs of those with developmental and intellectual disabilities. A key focus of the Saylor Alliance is having self-advocates take a central role in the delivery of the training.

Wandering (Elopement) - Kevin & Avonte's Law

Wandering (elopement) is a significant problem in the Down syndrome community, and can have tragic consequences. NDSS actively advocated for Kevin & Avonte’s Law (S 2614 / HR 4919), a bill named for two boys with autism who drowned after wandering. The bill was was introduced in the spring of 2016 and, although it passed the House on December 8, 2016, the bill did not pass in the Senate. The bill would have reauthorized the expired Missing Alzheimer’s Disease Patient Alert Program, and have included new provisions to support people with autism and other intellectual/developmental disabilities who wander. It would have allowed Department of Justice grants to be used by state and local law enforcement agencies to provide training programs with the goal of proactively preventing elopement (wandering), as well as to facilitate the development of emergency protocols for school personnel and first responders to track individuals who do elope. Grant funding could also have been used to establish or enhance notification and communications systems for the recovery of missing children with autism and other intellectual/developmental disabilities.

NDSS supported this legislation as it would have enhanced the safety of individuals with Down syndrome who wander and provided peace of mind to their families. NDSS submitted letters of support for the House and Senate versions of the bill and signed on to a letter of support as part of the Consortium for Citizens with Disabilities (CCD) Task Force on Developmental Disabilities, Autism, and Family Support. Click below to see these letters:

Thank you to all those who advocated for the passage of Kevin & Avonte’s Law. Through our efforts, Kevin & Avonte’s law is now the law of the land! The bill was included in the federal spending omnibus bill. Thank you again to everyone who worked to get Kevin & Avonte’s passed!