ACCESS NOT OPTIONAL
March 19, 2015
By Audrey Fraizer
An employee at a discount shopping mall is directed by his supervisor to board a bus the supervisor believes is the bus route he uses to travels home each day. Little does she know that she’s inadvertently creating a missing person situation for her employee. The individual boards the bus, takes a seat, and looks ahead.
After 20 minutes, he calls 9-1-1.
An EPD answers.
“What’s the address of the emergency?”
“What’s the phone number you’re calling from?”
“What’s your name?”
“Okay, Tim, tell me exactly what happened.”
The EPD asks again.
“Okay, Tim, tell me exactly what happened.”
Tim has boarded the wrong bus. The mistake is not the supervisor’s fault. She is new at the job and assumed that since Tim had not hesitated to board the bus, that it had to be the right route. Tim knew that a bus brings him within walking distance of his home, but not which bus to take to get home.
The EPD had little to go on, and by repeating the same questions in a variety of ways she was able to find out where Tim had been before boarding the bus. Another EPD at the center overhears the conversation and calls the lost individual’s workplace.
Tim’s supervisor confirms the EPD’s suspicions. Tim has a cognitive disability that affects his ability to communicate. The dispatcher radios local police to relay missing person information, with a description of Tim provided by the supervisor. He is wearing blue jeans, a white and gray striped short-sleeved T-shirt, and a black backpack. He has Down syndrome.
An officer locates Tim standing at the bus stop near a busy intersection, miles from his usual stop. The officer drives Tim home using address information printed on a laminated ID inside his pack.
It doesn’t always work out so well.
Callers with cognitive disabilities
Intellectual or developmental disabilities cover a broad range of abilities. An individual may find it difficult to engage in meaningful conversation or provide clear or concise information in an emergency situation. Thinking is generally concrete—the here and now and tangible. Abstract concepts—space and time, for example—do not translate into something solid.
Tim thinks that as long as he gets on the bus, it will take him to the correct bus stop near his home.
Tim recognized a problem and called 9-1-1, but he had difficulty understanding the calltaker’s questions and, consequently, gave unrelated answers in a situation that was foreign to his routine. While the situation might cause an alarm to sound in individuals without cognitive delay, Tim’s inability to retrace his steps or take action magnified his anxiety. He left on a bus, but he is not going home.
While a cognitive disability should not be assumed based on the caller’s voice or pattern of answers, there are steps a calltaker can take to gather information and reassure the individual when a disability is suspected.
The first step is powering down interrogation, which is not to imply that the person is incapable of grasping directives. People with cognitive impairments (brain injuries and intellectual and developmental disabilities) need concrete information and to have the steps they need to take broken down into smaller parts. Calltakers should avoid acronyms or other non-literal verbiage and listen intently to background sounds, such as traffic noise or public address systems indicating an outdoor event.
In providing Pre-Arrival Instructions (PAIs), give one step at a time, suggested Penny Van Dyke, assistant operations manager (retired), Prince George’s County (Md.) Public Safety Communications (PSC).1
If the person gets off track—which might mean the individual is having trouble understanding—rephrase and repeat or move on to the next question and go back to the previous question when you have that answer.
Listen for signs that the person does understand and, if you’re not sure, ask the caller to state his (or her) understanding of the message or ask the individual to repeat what he said and then repeat it back. Allow additional time for the person to process the information. Don’t assume the individual can easily transfer knowledge gained in one task or another.
“Above all, you don’t want the person to hang up out of frustration,” Van Dyke said. “Keep the person on the line. Your callback might not be answered.”
The human touch
Establishing the human connection means throwing out stereotypes. Do not jeopardize the individual’s self-esteem by projecting your labels, Van Dyke said.
Yelling into the phone, slowing and exaggerating enunciation, or speaking in a “baby voice” demean the individual. Amplified expression does not enhance the individual’s comprehension, and it doesn’t help to pretend that you, the calltaker, understand when, in fact, you don’t.
Questions leading with “when,” “where,” and “how” are abstract concepts; they have no physical referents. Instead, use concrete language. For example: “Tell me something you see,” rather than “Where are you?” Avoid questions regarding time/complex sequences of events.
“Make sure communication is established,” Van Dyke said. “It’s about getting the relationship going.”
Try to draw the person out using a calming and reassuring voice, suggested Tracye Gilbert, emergency dispatcher III and 9-1-1 shift supervisor, Prince George’s County PSC.
“Be aware of strengths,” she said. “The person might be able to understand far more than he [or she] is able to communicate back to you.”
Gilbert also suggested giving additional time for the person to process the information. The answers that might seem to “come out of nowhere” might be a delay in processing and answering an earlier question.
Special accommodations and QA
Van Dyke recommends developing policies to accommodate callers with cognitive disabilities and to keep the quality assurance team in the loop by noting variations in the review process involving these calls.
According to the ED-Q™ Universal Protocol Standard: Once the scripted protocol question or instruction has been read as written, if the caller does not understand the scripted question or instruction, the calltaker will rephrase it, using language equivalent or nearly equivalent in meaning to that in the script.
If your experience with people who have intellectual and developmental disabilities—and the experience of the staff as a whole—is limited, be proactive, said Jenine Wallace, emergency dispatcher III and 9-1-1 shift supervisor, Prince George’s County PSC.
“Reach out to the community and develop ways your center can make the process work,” she said.
Wallace recommended contacting agencies that work with people with developmental delays for advice and holding 30-minute group meetings with fire, EMS, law enforcement, and transportation representatives to address concerns and develop processes.
“You have to create awareness,” she said. “Effective communication (with a person who has an intellectual disability) takes understanding and patience.”
What resources are available?
There are also programs to facilitate communication that are particular to an agency or state, although not specifically geared toward 9-1-1 personnel.
The Arc, an organization for people with intellectual and developmental disabilities, recommends the File of Life (see Emergency Information Form (EIF) to the right) to provide critical medical information to assist medics responding to an emergency. The kit includes a refrigerator magnet, a personal size wallet/purse pouch, and a glove compartment vehicle pouch and supporting materials such as a door decal and instruction form. Arc suggests contacting your local municipality for access to the program.
An EIF is available through the American College of Emergency Physicians and the American Academy of Pediatrics; the form is filled out by parents and guardians for agency use in an emergency.
Maryland will be the first state to teach all law enforcement officers about people with intellectual and developmental disabilities in training sessions, starting this year. People with disabilities will play a part in every lesson, either in person or through videos. All police academies and veteran officers will be required to take the in-service training.
The 2014 Maryland General Assembly mandated the training following the death of Robert Ethan Saylor, 26, who had Down syndrome, when off-duty sheriff's deputies, moonlighting as mall security officers, tried to forcibly remove him from a movie theater in January 2013. His larynx was broken, and he suffocated.
California, Delaware, New Jersey, Indiana, Louisiana, and New Mexico all have laws requiring training for responders in interacting with people who have intellectual and development disabilities. Crisis Intervention Team (CIT) programs with about 2,800 police agencies nationwide teach officers to calm excited subjects instead of automatically using force.2
Colorado Life Trak is a radio transmission system designed to assist law enforcement and rescue agencies in locating lost or missing persons diagnosed with disorders complicating communication. Participants wear a personalized wristband that emits a constant tracking signal over several miles. A 9-1-1 call from the participant or a person reporting an individual lost or missing initiates a search with special tracking devices.
Equal access for speech- and hearing-impaired
The Americans with Disabilities Act (ADA) regulates equal access for people who are deaf, partially deaf, or have a speech disability. Specifically, the act requires 9-1-1 or other telephone emergency service providers to provide TTY (originally meaning Teletypewriter but today translated as Text Telephone) users with direct access and an opportunity to benefit from emergency services that is equal to the opportunity afforded others.3
TTY was developed in the early 1960s and newer TTY systems incorporate Voice Carry Over (VCO) and Hearing Carry Over (HCO) communications.
In VCO, a captioned telephone allows deaf and partially deaf individuals to receive both the voice and written captions of the conversation. The calltaker communicates by typing messages to the user on a TTY and listening to the CapTel user respond by voice.
HCO allows individuals with speech disabilities, but who have normal hearing ability, to type the telephone conversation to the other person on a text display (commonly, TTY) and listen to the other person's (calltaker) voice responses. The caller’s responses are typed directly.
Although TTY is an effective way to contact 9-1-1, Short Message Service (SMS) is becoming a primary means of phone communication for most Americans and that, of course, includes the approximately 48 million Americans who are deaf or partially deaf and 7.5 million Americans with speech disabilities.
To meet the new communication environment, the Federal Communications Commission (FCC) adopted rules in August 2014 requiring delivery of text-to-9-1-1 by wireless carriers and certain IP-based text application providers.
While text-to-9-1-1 is limited, it is expanding. According to the FCC (August 2014), PSAPs serving two entire states (Vermont and Maine) and portions of 16 states are accepting emergency texts. The FCC had already adopted rules requiring automatic “bounce-back” text messages where the service is not available.
Text-to-9-1-1 does not replace but is meant to augment existing voice-based 9-1-1 systems.
Red flags raised during calls alerted Karl Kuehn, a 9-1-1 center manager with the city of Layton, Utah, to find a solution through the service called Smart911, which minimizes the guesswork at the time of the call and without risking the individual’s confidentiality.
Smart911 provides a safe and trusted portal for residents to volunteer the detailed information about their household that 9-1-1 calltakers and dispatchers may need in the event of an emergency. The safety profile is available upon registering the landline or cellphone, and users can supply information on everything from medical conditions, to the home’s floor plan, to the number and type(s) of pets. An option to post photographs can help in finding a missing person.
Municipalities, such as Layton, provide the service through Rave Mobile Safety. The city pays for the service but does not charge residents for its use.
During the past 18 months since Smart911 went live for Layton residents, Kuehn continues to focus his outreach on people with the greatest need, including those with disabilities or health concerns and senior citizens. Smart911 can also assist in cases of repeated domestic abuse—when the caller may be afraid to talk—by verifying names and addresses.
“The perspective is not hitting the numbers,” Kuehn said. “We encourage safety profiles for anyone who might need some special attention during an emergency. The more people that sign up, the more people we can help.”
Kuehn emphasizes user confidentiality, an important factor in a society concerned about identity theft and data sharing. No one can access the personal data without a 9-1-1 call triggering the profile stored in the Rave database, and users receive notification every six months to update their profiles. They can add, subtract, and opt out, Kuehn said. As yet, he hasn’t heard of anyone dropping out.
“We’re not trying to intrude on personal lives, and we’re going to ask most of these questions during an emergency, anyway,” he said. “The technology saves time and represents another way for us to help the community.”
EIFs are available at
1Van Dyke P, Wallace J, Gilbert T. “Beautiful Minds of Special Needs Callers.” NAVIGATOR 2014.
2Dishneau D. “Police to get training about disabled people.” The Denver Post. Associated Press, Maryland. 2014; May 22, http://www.denverpost.com/nationworld/ci_25816340/md-police-get-training... (accessed Oct. 20, 2014).
3“Access for 9-1-1 and Telephone Emergency Services.” Federal Communications Commission. http://www.fcc.gov/encyclopedia/access-9-1-1-and-telephone-emergency-ser... (accessed Oct. 20, 2014).