“Nothing About Us, Without Us”


Wednesday was a historical day in the Maryland General Assembly. The Maryland Senate Finance Committee convened a hearing on a major piece of legislation – the Ethan Saylor Center for Self‐Advocates as Educators. This groundbreaking center would prepare people with Down syndrome and other intellectual and developmental disabilities to participate in training programs for law enforcement and other public sectors.

Senator Ron Young (D‐Frederick) and Delegate Carol Krimm (D‐Frederick) introduced legislation (SB 853 and HB 1161) to establish The Saylor Center based on a key recommendation from the #justiceforethanCommission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities. As you may know, this Commission was formed following the tragic death of one of our own, Ethan Saylor, a young man who happened to have Down syndrome, who died in the custody of three off‐duty Frederick County sheriffs in January of 2013. The Commission is chaired by Special Olympics Chairman Timothy P. Shriver, and includes representatives of state, disability and law enforcement organizations, including myself. Our Commission, as part of our charge from former Governor Martin O’Malley, developed a detailed plan to promote safer practices for law enforcement personnel to respond to an individual with a disability.

Disability Advocates

I was honored and humbled to testify on the panel with Patti Saylor, Ethan’s mother, along with several members of the Commission along with law enforcement representatives, self-advocates and leaders of the Maryland disability community. You can read our NDSS testimony here.  You can also check out some excellent converge by the Frederick News Post of the hearing here .

What Would This Legislation Do?

The Saylor Center would recruit, prepare and coordinate individuals with intellectual and developmental disabilities to participate as trainers in a variety of trainings across the public sector, with an initial focus on training for law enforcement. Beginning in 2015, all police academies in Maryland must include training on intellectual and developmental disabilities. Our Commission recommended that self‐advocates participate in such training, but the need for qualified trainers far exceeds the current availability. The Center would be a first in the nation to be part of state government and sends a strong message that people with intellectual and developmental disabilities play a central role in any training about appropriately and effectively interacting with people with intellectual and developmental disabilities.Hearing Notice

In addition to training self‐advocates, the Center would identify and disseminate national, state and local training best practices regarding people with intellectual and developmental disabilities as trainers and educators. The legislation establishes a Governing Board that would oversee the Center and the effectiveness of training programs that include people with intellectual and developmental disabilities.

Goal: Forming a Saylor Center in Every State – One of Ethan’s Many Legacies 

As the national advocate for the value, acceptance and inclusion of people with Down syndrome, we strongly urge the State of Maryland to pass the Ethan Saylor Center for Self-Advocates as Educators Bill (SB 853) to establish this new center to support the coordination and preparation of self-advocates who can become active educators in training in various sectors across the state. Maryland, with this significant legislation, has the opportunity to lead the way for other states to follow. As the national advocacy organization representing people with Down syndrome, we would plan to spearhead the effort to ensure that every state in this country has an Ethan Saylor Center, and Maryland, Ethan’s home state, could help us lead the way in doing so. Law enforcement, the disability community, and the state legislature collectively have the power to diminish the likelihood that a similar tragedy will happen again.

What’s Next in Maryland? Wednesday’s hearing was favorably received and we have been told by the Senate Finance Committee that the Committee intends to move some version of the bill, but there will be changes made due to fiscal impact of the bill. We realize that this bill is a revolutionary idea and even a scaled-down version will be a big stride forward. With only three weeks left to go in the legislative session, we expect to see quick action as the bill moves through the Senate and then goes to the House. Our team will be watching closely and will continue advocating for the establishment of the Center. Stay tuned on how you can advocate and help us pass the Saylor Center in Maryland.

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