Maryland Responds to Death of Man With Down Syndrome

The death of a young man with Down syndrome three years ago has resulted in a tangible change that will hopefully help protect future generations of people with disabilities in his state.

In January 2013, Robert Ethan Saylor, a 26-year-old with Down syndrome, went to see “Zero Dark Thirty” at a movie theater in Frederick, Maryland. After the movie, when Saylor refused to leave the theater because he wanted to watch it again, the theater called three off-duty Frederick County sheriff’s deputies to help remove him, The Washington Post reported. Despite warnings from Saylor’s aide that he did not like to be touched, an altercation occurred between the officers and Saylor, who ended up on the ground in handcuffs and in medical distress. A short time later, Saylor was pronounced dead at a local hospital. A grand jury investigation into the incident did not indict the officers involved.

Three years later, part of Saylor’s legacy is a groundbreaking new approach to law enforcement training.

After Saylor’s death, his sister Emma Saylor started a Change.org petition that earned nearly 380,000 signatures and got the attention of the Governor of Maryland at the time, Martin O’Malley. Through executive order, O’Malley established Maryland’s Commission for Effective Community Inclusion of Individuals With Intellectual and Development Disabilities. The Commission included both people who represented law enforcement and people who represented the disability community. They were charged with developing some recommendations for the state. The Ethan Saylor Alliance was then established to implement the commission’s recommendations for increased training for members of law enforcement and other public entities.

A few things make what’s happening in Maryland unique. First, no state has a consistent, uniform training program regarding individuals with developmental disabilities offered to officers statewide. Currently, many places have some requirements and guidelines for officers to get disability-sensitivity training, but they vary widely from county to county.

“We did a lot of research early on what other models are out there when it comes to training for law enforcement and first responders,” Sara Weir, the President of the National Down Syndrome Society (NDSS), told The Mighty. “No place has this comprehensive of a platform rolled out in a statewide effort.”

Something else that makes Maryland’s program unique is the emphasis self-advocates. The training is taught by people with disabilities who are being paid for their work.

The Ethan Saylor Alliance is recruiting, training and supporting individuals with intellectual and developmental disabilities who will then teach and run the trainings with police officers and first responders.

“That portrays a powerful message to everyone about partnership and [equality] in all efforts,” Joanna Pierson, the Executive Director of The Arc of Fredrick County told The Mighty.

The trainings are much more comprehensive than what is offered in many other places, according to Teri Sparks, who works at the Maryland Disability Law Center and was on the Governor’s Commission and Co-Chairs the Saylor Steering Committee.

“This isn’t disability-sensitivity training; this is actually a training for officers on how to interact and respond to individuals with disabilities,” Sparks told The Mighty. “It goes several steps beyond disability-sensitivity training.”

The trainings start with a four-hour core curriculum developed with the help of, and taught by, self-advocates with disabilities. This training has been mandatory for all incoming police officers since January 2015 and is now also mandatory in-service training to veteran officers as well. By the end of 2017, an estimated 27,700 officers statewide will have been trained.

Patti Saylor, Ethan Saylor’s mother, told The Mighty that many officers she’s met throughout this process have had little, if any, knowledge or understanding of intellectual and developmental disabilities. Standardized trainings can give officers and first responders insight into the experiences of a person with disabilities.

“Accountability is important, but training is a part of that accountability,” Patti Saylor told The Mighty via email. “It’s important to meet law enforcement where they are at when demanding accountability… Standardizing training and building relationships between the law enforcement community and the disability community are paramount for safety and accountability.”

No piece of legislation mandated law enforcement undergo this training; the decision to implement the new training techniques was an agreement reached through cooperation between law enforcement, the government and the disability community.

Sparks says the Alliance has already been contacted by some other states interested in implementing this.

“It is our hope that this will be a template that other states will follow to ensure the safe community inclusion of individuals with intellectual and developmental disabilities,” Sparks told The Mighty.

NDSS is currently developing a tool kit and packet with some model legislation to facilitate other states following in Maryland’s example. The tool kit will be available this spring.

“We want to make this the very best state in terms of community inclusion,” Sara Weir told The Mighty. “We want to make Maryland the model state and push the legislation and recommendations from the commission to all 50 states.”

Patti Saylor is proud of what’s happening in Maryland — how it grew out of a grassroots effort, how it is an example of the power of a collective and relentless call for change. But, she says, it’s not time to celebrate. There is still a lot of work to be done to bring this kind of change to every state in the country. For now, she finds solace in how this change has become an important part of her son’s legacy.

“While our family continues to grieve the loss of him in our daily lives, we take comfort in knowing others can be spared heartache or worse because of these efforts,” she said.