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."
SACHA PFEIFFER, HOST:
It can take years of training to learn how to work with people who have disabilities like autism or Down syndrome. Yet, the police encounter people with these conditions at crucial moments. And they often have little or no training at all. NPR's Meg Anderson reports on one state's efforts to change that.
MEG ANDERSON, BYLINE: Patti Saylor is showing me pictures of her son Ethan in a cap and gown at high school graduation, laughing with his younger brother and sister.
PATTI SAYLOR: He was a character like so many people with Down syndrome are, just big personality.
ANDERSON: Ethan loved guitars and animals and action movies.
SAYLOR: From an early age, he loved everything good guy, hero. And then another extreme passion of his was law enforcement. And that's something that is really shocking when I tell people that.
ANDERSON: Shocking because in 2013, Ethan was killed in an encounter with police. He went to see the movie "Zero Dark Thirty" with an aide hired to help him be more independent. After the movie, Ethan tried to see it again. But he didn't buy another ticket. And he was confronted by three off-duty Frederick County, Md., sheriff's deputies. They were working security, and Ethan refused to leave.
SAYLOR: And so at that point, they just upped the ante. Well, you know, if you don't leave, we're going to have to arrest you.
ANDERSON: Ethan had the physical characteristics of someone with Down syndrome and had significant cognitive impairments and struggled with anxiety. The deputies said Ethan was asked to leave before they took him by the arms. According to a civil lawsuit filed by Ethan's parents, the deputies, quote, "tried to drag him from the theater." And Ethan, quote, "ended up on the floor with at least one deputy on top of him."
SAYLOR: And he stopped breathing. So the officers perform CPR. And, you know, Ethan died there on the floor of the movie theater.
ANDERSON: He was 26-years-old. The deputies denied any wrongdoing. And a Frederick County grand jury cleared them of criminal charges. But Ethan's death got national attention. And it highlighted a big question, just how much training do police officers get on these types of disabilities?
SETH STOUGHTON: The answer is short and depressing. They're generally not trained.
ANDERSON: Seth Stoughton is a former police officer and a law professor at the University of South Carolina. He studies how police are trained nationwide. Officers, he says, generally spend a lot of time learning how to gain control.
STOUGHTON: I am the boss. You do what I tell you to do. And if someone doesn't do what I tell them to do, it is indicative of a potential threat.
ANDERSON: But what some officers see as non-compliance might just be inability. In Maryland, largely because of Patti Saylor's advocacy, police officers are now taught how to adjust their behavior. It's a leader among states in requiring this type of training.
PERCY ALSTON: All right. Good morning, everybody.
UNIDENTIFIED STUDENTS: Good morning.
ANDERSON: In a classroom at the Prince George's Community College, about a dozen officers are listening to Percy Alston. He runs the police academy here.
ALSTON: So how many of you in uniform would let somebody walk up to you and touch you?
ANDERSON: A few officers cringe. They're not used to being touched. But Alston says someone with an intellectual disability might want to do that. He also says the person could feel overwhelmed by police. They might struggle to follow directions or manage emotions.
ALSTON: Here's a scenario. We've got a mother and a daughter.
ANDERSON: Now, it's role-playing time. Trainer Elaina Camacho, who has autism, is playing the daughter. She threatens her mom with a nail file, and her mom calls the police.
JOSEPH POWELL: Elaina.
ELAINA CAMACHO: What?
POWELL: Hey, how you doing?
ANDERSON: The officer, Joseph Powell, gets her to open the door, but not until he knows it's safe.
POWELL: Before you let me in, though, is there any weapons you have in there that might harm me or anyone else?
ANDERSON: Powell asks Camacho to put down the nail file. She does. And then he does something unusual. He asks to play her video game while they talk.
POWELL: Am I pressing the right buttons?
POWELL: OK, yeah, I just won. Thought I was good.
ANDERSON: Percy Alston tells the class that moment was key. With a person who has an intellectual disability, one thing officers can do is slow down.
ALSTON: So coming up with different strategies on how to get the goal that you're trying to obtain - I don't care how you get there, you got there. I loved it.
CYNTHIA BROWN: Twenty-seven years, never received a class like until today.
ANDERSON: Cynthia Brown, is one of the officers being trained. She used to be an officer in Washington, D.C. Now she's an investigator at a Maryland high school.
BROWN: I think it should be taught everywhere to all law enforcement.
ANDERSON: Patti Saylor was at the training, too, watching from the front row. She says for her son Ethan, that could have made the difference.
SAYLOR: So many police officers have asked me, well, what should they have done? And I said, well, you've got to use your bag of tricks. If you really wanted him to leave, you may have said well, let's go on out here and get a snack while we wait for your mom.
ANDERSON: There's no magic pixie dust, she says. It all comes down to relationships. Meg Anderson, NPR News. Transcript provided by NPR, Copyright NPR.