‘Take Me Home’ ID will help nonverbal people communicate with police

Enterprise file photo by Michael Koff

State Assemblyman Angelo Santabarbara, at left, wants to see a standardized ID card for people who have difficulty communicating, such as people who are on the autism spectrum or who have Alzheimer’s disease. Santabarbara’s son, Michael, at right, is on the autism spectrum and speaks “a very few words,” his father said; Michael communicates with high fives, as here, uses a communication tool on his iPad, and is learning sign language.

ALBANY COUNTY  — The Guilderland police chief and a local legislator each has a son on the autism spectrum, and each is working to keep people who have trouble speaking safe.

State Assemblyman Angelo Santabarbara has proposed three-part legislation. The first part, which passed, created a statewide autism advisory board, now about to release an action plan. The other two bills — one to train police and the other to issue identity cards — are still in process.

Meanwhile, Guilderland Police, under the leadership of Chief Carol Lawlor, have just launched an ID-card program to supplement Guilderland’s Take Me Home program started in 2013.

The Take Me Home program is for people who are nonverbal or easily disoriented. This includes, Guilderland Police Chief Carol Lawlor said Thursday, people with Alzheimer’s disease or dementia and people on the autism spectrum or with other developmental disorders. It can include anyone who has difficulty communicating, she said, and about 60 people are now registered.

Lawlor said that her own adult son, who is on the autism spectrum and is nonverbal, will carry one of these cards.

While having a son who is on the spectrum may make this issue a little more immediate for Lawler, she said she likes to think that most of the Guilderland Police officers and other staff are keenly attuned to dealing with this issue. They are well trained in recognizing people with developmental disabilities or mental-health issues and finding ways to communicate, Lawlor said. Some have taken first-responder training in these topics offered by Albany County, and others have returned from that training to teach it, in turn, to Guilderland officers, she said.

In the Take Me Home program, begun four years ago in Guilderland, emergency information, photos, and descriptive information supplied by family is put into a database. This has enabled officers, in the past — when people were located who were unable to communicate or tell police their names — to check the database to see if they were registered and, if they were, to find out more about them and contact family members or caregivers.

The new ID-card system will provide another layer of protection, police believe. The card, the size of a driver’s license, will contain the registered person’s name and emergency contact information as well as instructions to contact the Guilderland Police.

Once police are contacted, they will have access to information about the person including diagnosis; method of preferred communication, such as sign language, picture boards, or written words; any sensory issues; favorite attractions or locations; likes and dislikes; and any atypical behaviors that may attract the attention of first responders.

People wishing to register someone for the Take Me Home program and receive an ID card may register online at www.guilderlandpd.org/takemehome and then make an appointment to have a photograph taken, Lawlor said.


The Enterprise — Elizabeth Floyd Mair 
The newly launched Take Me Home ID card will look
like this, said Guilderland Police Chief Carol Lawlor. 


Santabarbara’s legislation

Assemblyman Santabarbara, whose 111th District covers Montgomery County, most of Schenectady County, and the towns of Berne and Knox, continues to push for his package of bills that would create a standardized, optional ID card for people with autism and anyone with difficulty communicating, as well as standardized training for law enforcement and first responders across the state. The training would teach first responders best practices for recognizing and interacting with people on the spectrum and would also let them know to look for an ID card.

Santabarbara’s son, Michael, like Lawlor’s son, is also on the autism spectrum. Michael Santabarbara is largely nonverbal, his father said. Michael communicates with thumbs-ups and high fives and speaks “a very few words,” his father said; he also uses a communication tool on his iPad and is learning sign language.

Interest rose dramatically in the assemblyman’s bills, he said last week, when a body-camera video went viral in September, showing a police officer in Buckeye, Arizona, a suburb of Phoenix, stopping and handcuffing a 14-year-old boy, Connor Leibel, who had been walking alone in a park, “stimming.”

“Stimming” — or self-stimulatory behaviors — are movements that many people with autism make involuntarily, such as hand flapping, rocking, or bouncing. Experts say these behaviors stimulate the senses or decrease sensory overload, help with adapting to an unfamiliar environment, and reduce anxiety and produce a sense of calm.

The officer did not recognize the teenager’s repetitive hand movements as a signal of a developmental disorder — and did not know the word “stimming,” which the young man used and his aunt later explained — but thought the boy was using drugs, he explained later.

Santabarbara said his own son does hand flapping with one of his hands at all times.

And Michael, the assemblyman said, is 15, but looks like an adult, Santabarbara said; unlike the thin 14-year-old in the video, Michael is six-foot-two and weighs 220 pounds.

“He looks like an adult, but he’s not,” said Santabarbara, and this makes the assemblyman all the more worried about how the police might treat his son in an encounter, if they felt threatened by his size.

People affected by autism are not any more likely than the typical population to be dealt with by law-enforcement officials as witnesses, victims, or suspects, says Dennis Debbaudt of Florida, a nationally recognized expert who develops, conducts, and advocates for first-responder training around this issue. But people with autism are up to seven times more likely than others to encounter police, Debbaudt said, because of what is called the “suspicious person” contact — calls from neighbors or passersby who see someone doing something that doesn’t seem “normal.”

In the Arizona video, Santabarbara said, the teenager was outside enjoying his favorite park when he was stopped and then, when he tries to walk away after speaking briefly with the officer, tackled to the ground and handcuffed.

The number of people on the spectrum has been rising for years, and is now at 1 in 68, said Santabarbara, and they are not all children anymore. There are many adults who are working and who are enjoying parks like anyone else, he said, adding, “And why shouldn’t they?”

It isn’t just police, Santabarbara said: His son would be likely to run away if approached by a firefighter, too. He recounted the accommodations that needed to be made recently when Michael’s blood needed to be drawn for a Lyme test, after he was bitten by a tick:

Blood had to be taken from the left arm, because Michael must constantly move his right hand to manage his stress and anxiety; the lights needed to be lowered, and there could not be any loud noises, since those would make Michael immediately raise his left thumb to cover his ear, when he needed to hold his arm still.

Santabarbara, who is the chairman of an assembly committee on autism-spectrum disorders, wants to see the same identity card used statewide, to help ensure that all first responders will look for and recognize it. He said the card could potentially be made in a bright yellow or bright red to make it more noticeable.

The card would include the bearer’s name, address, and diagnosis — such as autism or Alzheimer’s — and a few sentences about that condition, such as, “I may become physically agitated if you prompt me verbally or touch me or move too close to me … I am not intentionally refusing to cooperate. I may need your assistance.”

In the 21-minute Arizona body-cam video, Connor remains handcuffed for almost five minutes, even after his aunt arrives and explains to the officer that the young man is on the autism spectrum and explains the hand movements. The officer explains later in the video that, because the boy had held the string up and seemed to smell it, the officer thought he was inhaling drugs; then, when the boy abruptly tried to walk away, he grabbed him.

The teenager and his aunt are detained for about 20 minutes, as other officers arrive and discuss the situation. Near the end of the video, the aunt suggests politely that local officers might need training in recognizing signs of autism.

“The more information we have, the more quickly we can de-escalate,” Santabarbara said.

One of Santabarbara’s bills was signed into law this spring. It created the first-ever statewide autism advisory board.

The board consists of “a powerful mix,” Santabarbara said, of the heads of state agencies that deal with developmental disabilities, experts in the field of autism, as well as “self-advocates,” including family members of people who are on the spectrum. The board is also open to people who have autism, Santabarbara said, adding that their voices are crucial.

One of the tasks of the board will be to develop a statewide, unified autism action plan. The plan, which Santabarbara says will be complete in a matter of days, will look at all of the challenges that people with these disorders face: including communication, housing, and employment, Santabarbara said, and make recommendations. It will be sent to all of the state’s legislators and to the governor’s office.

The plan will be revised every year, the assemblyman said, to incorporate the most up-to-date information and practices.

Santabarbara’s remaining bills — centered on the optional ID card and the standardized training — have found new sponsors since the release of the Arizona body-cam video.

The ID-card bill passed in the Assembly, but was not discussed or voted on in the Senate, he said.

Soon after the release of the body-cam video — which Santabarbara said brought him to tears — he shared links to it with state legislators and with the governor’s office.

Santabarbara hopes his two remaining bills will pass this spring.

Santabarbara calls the Take Me Home program “another tool in the toolbox,” and notes that he has partnered with police in both Schenectady and Rotterdam to start programs and is now talking with Amsterdam police about starting one.

Police in Schenectady offer the use of an optional shoelace charm — slipped over a shoelace — that can alert first responders that the person is in the Take Me Home program.


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