Working with people who have intellectual and developmental disabilities, like Down syndrome or autism, can be complex and challenging even for those with years of training. But one group — law enforcement — often encounters people with these conditions in high-stress situations, with little or no training at all.
Patti Saylor knows all too well what the consequences of that can be.
Her son Ethan, who had Down syndrome, died after an encounter with law enforcement when he was 26. It's a tragedy she believes could have been prevented.
In January 2013, Ethan went to see the movie Zero Dark Thirty at a mall in Frederick County, Md. Afterward, when his support aide went to get the car, Ethan went back inside to try to see the movie a second time, but he didn't buy a new ticket.
Three off-duty sheriff's deputies, who were working as security guards, confronted him.
"He didn't cooperate, of course," Patti Saylor says. "He didn't want to leave. At that point, I believe, he wouldn't know what was going on."
According to a civil lawsuit filed by Ethan's parents, the deputies "tried to drag him from the theater," and Ethan "ended up on the floor with at least one deputy on top of him." The deputies said Ethan was asked to leave before they took him by the arms. They denied any wrongdoing in the case, which reached a settlement last year. There on the floor of the movie theater, Ethan stopped breathing. He was later pronounced dead at a local hospital. His death, from asphyxia, was ruled a homicide. A Frederick County grand jury cleared the deputies of criminal charges.
Ever since, Patti Saylor has been fighting to change the way law enforcement personnel are trained when encountering people like Ethan. She says families like hers — with firsthand knowledge — have a unique perspective.
"We know something the police don't know," Patti Saylor says. "I felt like we needed to teach them, and then hold them accountable."
"It's not always resistance"
Ethan Saylor's death highlighted the lack of training many law enforcement officers have when it comes to people with intellectual or developmental disabilities.
Instead, much of their training revolves around how to gain and maintain control of a situation. Police training programs nationwide spend, on average, 168 hours teaching officers about use of force, weapons and defensive tactics, according to the most recent statistics from the Justice Department. That compares with only 10 hours spent on mental illness, for example. For that report, the government did not track the training time devoted to intellectual and developmental disabilities.
Police training often creates the mindset: "I am the boss. You do what I tell you to do," says Seth Stoughton, a former police officer and now a University of South Carolina law professor who studies police regulation. "And if someone doesn't do what I tell them to do, it is indicative of a potential threat."
Experts say people with intellectual disabilities may have trouble processing those orders. They may struggle to follow directions or manage emotions.
"It's not always noncompliance. It's not always resistance. Sometimes it's inability," Stoughton explains. "The officer very often will perceive that inability as a refusal."
Some police training addresses intellectual and developmental disabilities within what is known as crisis intervention training, which largely focuses on mental illness and substance abuse. At least 27 states and the District of Columbia require officers to be taught how to respond to someone with mental health or substance abuse issues, according to the National Conference of State Legislatures.
Stoughton says the skills taught in those types of training — good communication skills, practicing patience, and earning a person's cooperation — may apply when responding to a person with an intellectual or developmental disability.
But, he says, the signs of a mental health crisis don't always apply to someone with this type of disability. Without specific training on these disabilities, he says, an officer might not recognize that they should adjust their behavior.
"Different tools to use on the street"
Six years after Ethan Saylor's death, Maryland has become a leader among states in requiring police training on how to respond to people with intellectual and developmental disabilities.
The Maryland Police and Correctional Training Commissions adopted the new requirements statewide in 2014. The next year, the state established the Ethan Saylor Alliance, which helps ensure that people with these types of disabilities play a central role in the training. Two professors at Loyola University Maryland, Lisa Schoenbrodt and Leah Saal, developed one such training. With a state grant, they hired 10 adults with a range of disabilities to role-play common scenarios with police. Last fall, they piloted the class at Prince George's Community College.
"If we can provide a different perspective and give them different tools to use on the street, I just think that's great," says Percy Alston, the director of the college's Public Safety and Security Institute.
Alston is responsible for training new and experienced police officers on how responding to people with these disabilities might be different than what officers are used to. He cites one very basic example: A lot of police officers don't like to be touched.
"Once I put my uniform on, I'm like Superman; you can't touch my cape. But there are people with certain disabilities that do like to touch," Alston explains. "So them touching you is not going to be an assault."
On a Friday morning at the police academy, Alston leads about a dozen officers through the first half of the class, and then the Loyola trainers role-play with some of the officers. In one scenario, trainer Elaina Camacho, who has autism, played a daughter who threatens her mom. Officer Joseph Powell, who works with the Prince George's County public schools, calmed Camacho down by doing something unusual: He asked to play her video game while they talked.
Alston says that moment gets at the heart of what the class is all about. He knows that officers have to think fast and respond quickly, and they must protect their own safety. But when they encounter someone who has an intellectual or developmental disability, they may need to slow down and approach things in a different way.
Patti Saylor believes that could have made the difference for Ethan.
"So many police officers have asked me, what should they have done? And I said, 'Well, you've got to use your bag of tricks,' " she says. In Ethan's case, "if you really wanted him to leave, you may have said, 'let's go on out here and get a snack while we wait for your mother.' "
"There's no magic pixie dust," she adds. "It is relationship." Copyright 2019 NPR. To see more, visit https://www.npr.org.