Striving to Close The Gap Between First Responders and Indi…

December 2023 / January 2024 Closing The Gap Solutions - Striving to Close The Gap Between First Responders and Individuals Who Use Augmentative / Alternative Communication Systems by Mariesa Rang and Sharon Mankey

alternative augmentative communication (AAC)

Striving to Close The Gap Between First Responders and Individuals Who Use Augmentative / Alternative Communication Systems

stance, in our state of Indiana, “the minimum basic training requirements for each person ac- cepted for training at a law enforcement training school or acade- my includes 6 hours of training in interacting with: A. persons with autism, mental illness, addictive disorders, intellectual disabilities, and developmental disabilities. B. missing endangered adults as defined in Indiana code 12- 7-2-131.3. C. persons with Alzheimer’s or related senile dementia.” When one considers the amount of information that can be disseminated on each of the above topics to fit within the six-hour time frame, it becomes evident that such training may actually contain only basic information for the emergency first responder (EFR) to have the necessary skills to meet the needs of the victims.

In the United States 1.65% of the overall population have re- ported being victims of crime. Considering that research has shown that people with disabilities (PWD) are 1) four times more likely to be victims of crime as compared to individuals without disabilities and are 2) less likely to report and less likely to have their crimes prosecuted, it becomes evident that crimes involv- ing people with disabilities are under reported. In addition, first responders who are not trained in how to communicate well with victims who are nonverbal poses additional problems in getting necessary information to bring charges against perpetrators or to assist in other types of emergency situations. Each state has requirements for the numbers of hours and the types of training that are annually required for the different types of emergency first responders (EFRs) in law enforcement, firefighters, emergency medical services, and dispatchers. For in-

MARIESA RANG is a speech language pathologist currently teaching part-time at Western Michigan University. Her recently completed doctoral dissertation focused on training emergency first responders about how to communicate with people with complex communication needs. Mariesa Rang and Sharon Mankey have trained over 2000 first responders since 2016 and are working to share the training program nationwide. SHARON MANKEY is a former licensed practical nurse and emergency medical technician. Her career in speech language pathology included working with individuals from ages 0 – 99 years and work places included early intervention, hospital, and public and private schools. She retired from Purdue University – Fort Wayne in 2020 after a career of 19 years as an assistant clinical professor and the director of the Purdue Fort Wayne Communication Disorders Clinic .

December, 2023 / January, 2024 | www.closingthegap.com/membership

BACK TO CONTENTS

This can be compounded in a variety of situations. In the in- stance of natural disasters and especially when a PWD needs to be evacuated/relocated, EFRs need to be aware that individuals who are nonverbal or those with complex communication needs (CCN) may have a communication “system” (aka augmentative/alterna- tive communication [AAC] device, “talker,” iPad, or other name for their system) that they use to communicate. EFRs are often not aware of how important these systems are for the individual in being able to respond with their personal or health information. If it is not known that these systems are used or the location of the devices at the time of the emergency, the EFRs may not be aware to send the devices with the individual. This leaves the PWD un- able to communicate enroute and while at the new location. This can be a difficult situation for the person who is displaced as well as frustrating for those who are trying to communicate with them. This may result in not gathering needed information to provide adequately for that individual’s needs. At one in-service, an EFR verbalized how frustrating it would be on the part of the rescuer to not have a means to understand the individual who needs to be rescued. He noted that he would feel “helpless to know exactly what to do to assist.” This demonstrates the need for a training directly related to improving the commu- nication skills of EFRs in regard to individuals who are nonverbal or who have complex communication needs. Should the individual who uses an AAC system be separated from a known caregiver (as in the case of the caregiver’s illness or perhaps an accident where transportation to a medical facility is necessary), having access to the communication system is critical for the PWD to be able to summon assistance. This may involve contacting 911, explaining the situation to the responding EFRs, or even making arrangements for other people to step in as care- givers. The EFR needs to understand the communication system should not be viewed as “a toy” or “entertainment” for the individ- ual and instead be viewed as a critical piece of medical equipment used for communication to ask or answer questions. It should be viewed in the same way as a walker or wheelchair is viewed as a mobility device. All of these devices help support the individual in their independence to the fullest extent possible, so EFRs should be diligent in ensuring the individual they are helping has access to their device(s). EFRs need to be aware that communication devices may be accessed in different ways. They may communi- cate through direct selection or scanning by using various body parts to control their device. This will differ between individuals depending on their physical and cognitive abilities. Addition- ally, EFRs need to be aware that AAC devices may not have the emotion or inflection in the voice output in the same way spoken speech does. This lack of inflection may not reflect the individu- al’s emotional state when giving information. It is important that the EFR respond to the message they are trying to convey. Some individuals will also use nonverbal language to supplement their communication, so EFRs need to be aware of that, as well. In 2016, during an event to raise awareness of communicat-

ing with individuals with complex communication needs (CCN), it became evident that members of a local fire department did not have the necessary skills to address the needs of one of the participants. Casey, a young man with cerebral palsy who was accessing his communication device with his foot, volunteered to answer questions from people who were attending. These two firefighters were strongly encouraged to engage Casey in a con- versation. While they were reticent to do so at first, introductions were finally made and Casey asked them a question. His question was,“If my dad has a heart attack and I call 911 to ask for help, how seriously will they take my call?” The EFRs were momentarily left speechless as to how to answer his question and then replied,“We don’t know.” Upon realizing the seriousness of the question, the firefighters requested more information to be better prepared in a situation such as this. This request led to the development of an in-service that would ultimately be shared not only with that fire department but with the county sheriff’s department, the city police department of Fort Wayne, and various smaller towns and counties in the area in 2017. Given the positive response to the in-service, grants were secured in 2018, to provide the necessary funds to take the in-services to many first responder departments across the state. The value of the in-service was spread from de- partment to department by word of mouth in addition to mail, email, and phone calls to set up trainings. By 2019, approximately 1800 EFRs in Indiana had received the training. In 2020, COVID-19 brought a stop to trainings, but some trainings took place in Mon- tana and Michigan in 2022-23. The training is a one and one-half hour long combination of lecture, videos, role-playing scenarios, and question/answer. During the lecture, information is disseminated concerning who uses AAC, such as individuals with developmental or acquired dis- abilities. Videos and lecture also highlight how individuals access their devices, either through direct selection or scanning. One key component of the lecture is the presentation of crime statistics, as this demonstrates the increased vulnerability of PWD. In addition to the crime statistics, EFRs receive guidance on facilitating con- versations and social skills such as asking the individual to repeat if the message is unclear. In person demonstrations are provided as well as videos of in- dividuals as they access and use their own devices. The videos were created specifically for the training program. They and their caregivers were excited at the opportunity to be a part of educat- ing EFRs on such a critical issue for them. In the videos individu- als with CCN offered information and/or advice on how to bet- ter interact during conversations and were encouraged to make comments directly related to emergency situations and/or their possible needs. The EFRs reported having a better understand- ing of their need to be patient as the person communicates and how the AAC systems can be a reliable way to gather information about the emergency situation. Stressed during the training was the need for the EFR to listen to the actual victim and not fully rely on information received from other individuals at the scene. This is particularly important in cases of suspected abuse (phys-

BACK TO CONTENTS

As the word spread about the trainings, the authors realized the magnitude of the work needing to be done and began recruiting other speech-language pathologists and relevant stakeholders to take the trainings to their communities. In order to facilitate this and make the task less daunting, the authors created a website that contains all of the training materials they use. This website for First Responders Augmentative/Alternative Communication is www.fraac.com and includes the PowerPoint lecture with the videos embedded, scenarios for role-playing, and a step-by-step instructional guide on how to contact departments and conduct trainings. Additionally, a sample training was filmed and added to the website so that people interested in offering training could see it being done before doing it themselves. Other resources rel- evant to the topic have also been added to the website. All mate- rials are free to download and use. While we offer these materials for others to use, we readily acknowledge that our way of doing things is not the only way for EFRs to learn this information. We encourage others who download the materials to revise them to best suit their own personalities and presentation style. We also encourage them to create their own videos so that EFRs may get a glimpse of individuals with CCN who live in their neighborhood. This familiarity may help the EFRs when working within an actual emergency. There is still a lot of work to be done and we continue to en- courage people to join us in the effort to improve communication skills between first responders and individuals with CCN. This is not the only profession where this training needs to be imple- mented though. Plans are in the works to educate medical and legal staff as well in an effort to meet the needs of the individual with CCN following the acute emergency. CITATIONS Bureau of Justice Statistics. (n.d.). Rate of Victimizations by Crime Type, 2021. Generated using the NCVS Dashboard (N-DASH) at www.bjs.ojp.gov. August 7, 2023. Bryen, D. N., Carey, A., & Frantz, B. (2003). Ending the silence: Adults who use augmentative communication & their experiences as victims of crimes. Augmentative & Alternative Communication, 19(2), 125-134. https://doi. org/10.1080/0743461031000080265 Harrell, E. (2021). Crime against persons with disabilities, 2009- 2019: Statistical tables. U.S. Department of Justice: Bureau of Justice Statistics, 1-18.

ical, mental, sexual, and other) where the other person present may be a caregiver, “friend,” or family member and yet may be the perpetrator. Anecdotally, the three groups (law enforcement, firefighters, and emergency medical workers) were noted to have varying de- grees of engagement at the beginning of the trainings. (Note that typically in the state of Indiana, firefighters also receive training in emergency medical services.) While firefighters and members of the emergency medical services group responded as more openly accepting of the information, law enforcement officers remained fairly detached as noted by their postures of leaning back in their chairs, little note taking, and folded arms. When the crime statis- tics were introduced, the law enforcement officers leaned forward and became more openly engaged in the presented material. By the end of the in-service the vast majority of the EFRs expressed having learned skills that would help them in emergency situa- tions with this specific population. Eight role-playing scenarios were developed based on sto- ries and situations discussed with a police officer and firefighter known to the authors. In these scenarios, one EFR is given the part of the “responding officer.” This participant receives only what an officer would receive over the emergency radio from the dispatcher. Generally, this information is fairly minimal. Another participant plays the role of the “victim.” The victim, of course has the bulk of the information and may or may not have a communi- cation system in order to respond to the officer’s questions. The purpose for the role playing is for the responding officer to deter- mine the full extent of the situation and assist the victim in a pru- dent manner. The responding officer has to respond creatively in some situations, ask appropriate questions and take the time to “listen” to the nonverbal victim. It was during the role-playing exercises that the EFRs often realized the gravity of using good communication strategies with this population. Following the role-playing scenarios, a short debriefing takes place to review the highlights of the training material. EFRs are encouraged to share their experiences with the whole group, in- cluding their successes and difficulties. They are also encouraged to ask any questions they have, and from these questions, the training program has undergone several revisions so that EFRs re- ceive the most critical and beneficial information as possible. The scenarios proved to be beneficial as the participants worked to find suitable solutions to the situations. One officer stated that he wished he had had the training a few weeks earlier as he respond- ed to a similar call to his scenario. During another in-service, the EFRs asked about transporting a motorized wheelchair if it is left at the scene of an accident. Despite the professional knowledge the presenters have, this question was baffling and the present- ers offered to research the question to provide the most accurate information possible. In this instance, the appropriate resources were found and shared with the inquiring department, in addi- tion to adding the newly discovered information to the existing training program.

December, 2023 / January, 2024 | www.closingthegap.com/membership

BACK TO CONTENTS

Page 1 Page 2 Page 3

www.closingthegap.com

Made with FlippingBook Ebook Creator