Health and Safety; Emergency Issues
Healthcare and AAC
Advancing Effective Communication, Cultural Competence, and Patient – and Family – Centered Care: A Roadmap for Hospitals: support for hospital personnel to implement New Joint Commission Standard on Effective Communication by the Joint Commission. Information on laws and regulations, links to information, model policies, and educational tools. Requires Adobe Reader for download. http://www.jointcommission.org/assets/1/6/ARoadmapforHospitalsfinalversion727.pdf
Books Beyond Words. Full color picture books. Titles include Getting On With Epilepsy, Going into Hospital, Going to the Doctor, Going to Out-Patients, Keeping Healthy Down Below, Looking After My Balls, Looking After My Breasts, Looking After My Heart, Michelle Finds a Voice. http://booksbeyondwords.co.uk/
Call to Action: Improving Care to Communication Vulnerable Patients, Joint Commission. [The Joint Commission accredits and certifies more than 18,000 health care organizations and programs in the United States.] Handout from webinar; includes tools and strategies for communication across health care settings. http://www.patientprovidercommunication.org/files/CommunicationVulnerableWebinar.pdf
Feedback on AAC intervention from adults who are temporarily unable to speak by Melanie Fried-Oken, Julie Howard & Susie Roach Stewart, Rehabilitation lnstitute of Oregon, Portland, Oregon, USA. Published online: 22 May 2015. Augmentative and Alternative Communication, 7:1, 43-50. "The natural oral communicator who becomes a temporary nonspeaker from neurologic disease, mechanical or surgical intervention, or the introduction of lifesaving equipment, can critique AAC intervention in a new and vital way. They can relate how satisfactory augmented communication is, and what obstacles can be overcome to effect successful expression. The suggestions provided here by cognitively intact adults who relied on AAC approaches during Guillain-Barre syndrome or botulism episodes are quite pragmatic and simple." https://www.ohsu.edu/xd/research/centers-institutes/institute-on-development-and-disability/reknew/research/upload/Article-48-CCN-LIS.pdf
How to Use Books Beyond Words. Books Beyond Words are full-colour picture books that address some of the problems in understanding experienced by people with intellectual and communication difficulties. BOOKS BEYOND WORDS: Telling the Whole Story in Pictures by Sheila Hollins (UK). http://www.intellectualdisability.info/how-to-guides/articles/books-beyond-words-telling-the-whole-story-in-pictures
The Joint Commission's Draft Standards on Patient-Provider Communication: Advancing effective communication, cultural competence and patient-centered care, 8/23/2009, Amy Wilson Stronks, The Joint Commission. Draft standards include many issues, including some specific to augmentative communication: training of staff on the use of communication tools, identification of the patient’s communication needs, provision of language access services and auxiliary aids, documentation of the use of language access services and auxiliary aids, and other related issues. http://www.patientprovidercommunication.org/index.cfm/article_5.htm
Learning about Intellectual Disabilities and Health, St. George’s University of London. http://www.intellectualdisability.info/how-to-guides Clinical communication guidelines: http://www.intellectualdisability.info/how-to-guides/articles/clinical-communication
Nonverbal Complaints / Clues, Ruth Myers, MD, James Salbenblatt, MD, Melodie Blackridge, MD. List of behaviors commonly seen as problems and possible biomedical causes. http://dimagine.com/page66.html
Nonverbal Individuals with Intellectual/Developmental Disabilities Experiencing GERD [gastroesophogeal reflux disorder]: From Infants to Older Adults by Wendie C. Medina, DNP, RN, APN-CNS, CRRN. IJNIDD – International Journal of Nursing in Intellectual and Developmental Disabilities 2005; 2(1):2. Clinical review article about the challenge of diagnosing GERD in individuals who are unable to report symptoms due to severe communication disorder and presumed intellectual disability. No test is definitive. Diagnosis relies on patient report of symptoms and of relief after treatment. Risk factors, reflux symptoms, behaviors that have been linked with GERD in studies. https://ddna.org/publications/journal/vol-2-issue-1-article-2/
Nonverbal Patients, developmental disabilities resources for healthcare providers. Includes Using Nonverbal Communication, Recognizing Medical Conditions (list of specific symptoms and underlying conditions that may be related), References, Resources. http://www.ddhealthinfo.org/
Patient Provider Communication website. "Communication is the joint establishment of meaning." Information, presentations, bibliography; links to articles and regulations relating to communication in healthcare settings: Promising Practices in Overcoming Communication Barriers, Training Nurses in Patient Communication, Joint Commission’s Draft Standards on Patient-Provider Communication, Hospital Communication Handbook, Overcoming Communication Barriers in Emergency Situations, Emergency Preparedness and Augmentative Communication, and other articles. http://www.patientprovidercommunication.org/
Promising Practices in Overcoming Communication Barriers by Harvey Pressman and Val Lewis. "In a few hospitals around the world, communication specialists are pioneering new ways to overcome the communication barriers between patients and care providers – barriers at the root of reduced patient safety, extended length of hospital stay, unnecessary exacerbation of pain, hospital caused injuries, avoidable deaths, and many other undesirable outcomes." http://www.centralcoastchildrensfoundation.org/draft/wp-content/uploads/2012/03/Promising-Practices.pdf
Recognizing Psychosis in Persons with Intellectual Disabilities Who Do Not Use Speech By Ruth Myers MD (formerly Ruth Ryan). "Persons with intellectual disabilities (also called learning disability or mental handicap) and/or developmental disabilities such as autism are vulnerable to the same psychiatric conditions as anyone else (Szymanski et al 1990) ... However, recognition of psychosis (hallucinations, delusions, or paranoia) requires the examiner to try to ascertain the internal perceptual experiences of persons who do not use the same primary spoken language as the examiner ... An additional complicating issue is that many of the same behaviours that might indicate psychosis can also be indicators of equally significant but very different (and much more common) neuropsychiatric phenomena. For example, a person who is experiencing a visual migraine aura might appear to be "looking at things that aren’t there". Thus, although careful observation is important, it is at least as important to interpret the observations in the context of the person’s other symptoms and life experiences." http://www.intellectualdisability.info/diagnosis/articles/recognizing-psychosis-in-persons-with-intellectual-disabilities-who-do-not-use-speech
Speaking Differently The focus of this website is on facilitating communication in the healthcare setting between health care professionals and people who use Augmentative and Alternative Communication (AAC). This websi te provides strategies that can be used in all stages of the communication process, from arranging the meeting, t o planning what you want to say, and repairing communication breakdowns. Communication Strategies for Health Pro fessionals, Frequently Asked Questions for AAC Users and for Health Professionals, Resources. http://grassrootsaac.com/Speaking%20Differently/Speaking_Differently/index.htm
Speaking Differently Tool Kits "Speaking differently is producing several "Toolkits" which consist of vital information that adult augmented communicators need when entering into important situations." A Visit to the Doctor, A Visit to the Dentist, A Visit to the Pharmacist. http://grassrootsaac.com/Speaking%20Differently/Speaking_Differently/toolkits.htm
Strategies for Healthcare Professionals. Explains strategies for using the “READY” approach (Respect, Eliminate Misunderstandings, Allow Enough Time, Do not Make Assumptions, Yes-No and Communication Preferences) http://grassrootsaac.com/Speaking%20Differently/Speaking_Differently/AACtion.htm
Vidatak EZ Boards: Meeting Patient Communication Needs with Evidence-Based Practice. Power Point presentation about need for communication support for patients, results of research. Link to presentation is in left border on web page. "It's time to improve patient communication standards." http://www.vidatak.com/research.html
. Information on VidaTalk app: http://www.vidatak.com/index.htmlSafety Issues
About Safety — This section contains information about common safety concerns for people who have physical and communication disabilities. Includes Safety Issues, Safety Situations, Resources. Communication Disabilities Access Canada website. http://cdacanada.com/safety/
Access to Justice — "Police, legal and justice services must be fully accessible to people who have communication disabilities. Topics: Videos, Communication Intermediaries, Information for police, legal and justice services, Communication Intermediary roster, Information for Communication Intermediaries, Information for people with communication disabilities, Guidelines for working with a Victim or Witness, Guidelines for Working with an Accused Person, Resources. Communication Disabilities Access Canada. http://www.access-to-justice.org/
Communication4ALL: You Can Tell and Be Heard (English/Sepedi) for Children and Adults in South Africa By Diane Nelson Bryen, Ph.D., Temple University, and Priscillia Kershaw, University of Pretoria, South Africa. "Being able to tell a trustworthy person that you have been physically or sexually assaulted or were a victim of another crime is one way to improve your personal safety." Includes Adult Communication Aid and Child Communication Aid. http://disabilities.temple.edu/aacvocabulary/c4all.shtml
Crimes and Abuse — Communication Disabilities Access Canada. "This section contains information about some abuses and crimes that can be experienced by people who have communication disabilities. There are suggestions for what to do if you think are being abused and vocabulary to communicate about abuse and crimes." Topics: About Abuse, Getting Help, Communicating about Abuse (Picture Displays, Communication Assistance), Resources. Picture displays (free download) include: Emotional Abuse, Sexual Abuse, Words about sex, Crimes, Financial Abuse, Physical Abuse, Making decisions about abuse, Making a complaint/disclosure, Emergency, Discrimination, Police, Legal People and Places, Legal Procedures, Legal Outcomes. http://www.cdacanada.com/crimes/
Ending the Silence of People with Little or No Functional Speech: Testifying in Court by Diane Nelson Bryen of Temple University, Christopher H. Wickman of Temple University. "Research from the United States indicates that people with developmental disabilities are four to 10 times more likely to be victims of a crime and that crimes against them are less likely to be reported or prosecuted (Martin, Ray, Sotres-Alvares, Kupper, Moracco & Dickens, 2006). Individuals with disabilities who have little or no functional speech face a double vulnerability when it comes to crime, abuse, and neglect as they are often the voiceless and invisible members of society (Bryen & Frantz, 2004; Bryen, Carey, & Frantz, 2005; Davies, 2002)… In summary, based on the 14 legal cases analyzed for this article and the outcomes of their trials, victims with disabilities who have limited or no functional speech have the right to, and the support of legal precedents, to testify in court proceedings." Report from a research study. http://dsq-sds.org/article/view/1711/1759
Premise Alert Communication Boards. Speak Unlimited Inc. "Our nonverbal communication boards assist professionals and people who cannot make their circumstances clear due to that they speak another language or have a medical condition such as autism, Alzheimer's syndrome, stroke, traumatic brain injury, unfamiliar or impaired speech, or other difficulties." Versions for Police, EMS, Hospital, or School Nurse. http://papremisealert.com/us/communication-boards/
Safeguarding People who use Augmentative and Alternative Communication from Sexual Abuse / Victimization. The Speak Up Project was designed to: 1) explore the experiences and needs of people who use AAC in relation to sexual abuse; 2) provide resources, education, vocabulary and strategies to respond to and / or to reduce the risk of abuse in their lives; and 3) provide support to community agencies that should play a role in responding to, or preventing the sexual abuse of people who use AAC. http://www.cdacanada.com/crimes/Speak_Up/SUPSummaryReport.pdf
Safety Matters: 5 Resources for People who Use AAC by Carole Zangari., PrAACtical AAC blog. "Whether it is in preparing AAC materials, teaching people to use them, promoting self-advocacy, supporting families, or educating the community: Safety matters. — If you’re not safe, nothing else is even worth talking about." http://praacticalaac.org/praactical/safety-matters-5-resources-for-people-who-use-aac/
Tips for Emergency Response Personnel Interacting with Someone Who Needs Communication Assistance by Diane Nelson Bryen. http://disabilities.temple.edu/aacvocabulary/e4allTips.shtml#tips
Victimization of Clients Who Use AAC. "People who have complex communication disabilities and who use augmentative and alternative communication systems (AAC)* are highly vulnerable for all types of abuse and crimes." http://www.access-to-justice.org/pdfs/Victimization.pdf
Emergencies / Emergency Preparedness
Emergency Preparedness. Extensive list of links to information and resources. USSAAC (United States Society for Augmentative and Alternative Communication) website. http://www.ussaac.org/emergency-preparedness
AAC in the ICU, Augmentative Communication News, February 2007 "“Being unable to speak is a common condition in ICUs, because more than one-third of those admitted require mechanical ventilation ... an ability to communicate during a critical illness can increase the patient’s participation in the assessment of pain and other symptoms and in making important decisions." Article includes AAC Materials for the ICU, AAC Strategies for Supporting Expression, Suggested ICU AAC Equipment and Supplies http://www.augcominc.com/newsletters/index.cfm/newsletter_1.pdf
Communication vulnerable patients in the pediatric ICU: Enhancing care through augmentative and alternative communication John M. Costello, Lance Patak, and Jennifer Pritchard. Journal of Pediatric Rehabilitation Medicine: An Interdisciplinary Approach 3 (2010) 289–301. "Being unable to communicate is emotionally frightening for children and can lead to an increase in sentinel events, medical errors and extended lengths of stay…This article describes three phases of intervention for communication vulnerable children in the PICU and provides examples of treatment approaches that ensure communication access as their medical condition changes." https://www.researchgate.net/publication/51523623_Communication_vulnerable_patients_in_the_pediatric_ICU_Enhancing_care_through_augmentative_and_alternative_communication
Preparenow.org The mission of preparenow.org is to ensure that the needs and concerns of vulnerable people are addressed in emergency preparedness and response. Preparedness library: http://www.preparenow.org/prepare.html. All library documents are downloadable and in the public domain. Each may be used as is or adapted. Credit to the original creator and/or this website is appreciated. Some of these documents provide assistance for organizations whose client base includes vulnerable people, while others are designed as planning tools for individuals. The information in this library makes it possible for organizations with limited staff and funding to make preparedness information available to a broader audience. Resource Links: http://www.preparenow.org/links.html
Disaster Preparedness and People with Complex Communication Needs "The AAC community has a key role to play in ensuring that people with limited speech have access to communication during an emergency or disaster. While each situation is different and not everything can be anticipated, planning and preparations ALWAYS result in better outcomes." Information and materials for people with limited speech, emergency response personnel, AAC advocates. http://aac-rerc.psu.edu/index.php/webcasts/show/id/12
Earthquake Tips for People With Disabilities http://www.preparenow.org/eqtips.html
Earthquake Tips for People with Cognitive Disabilities (intellectual disabilites, brain injury, stroke and other conditions that may reduce the ability to process information.) http://www.preparenow.org/cogdis.html
Strengthening Emergency Communication Strategies Between Responders And People Who Are Disproportionally Impacted by Sarah Blackstone. Downloadable PowerPoint presentation. http://adapresentations.org/doc/8_13_15/Strengthening_emergency_comms.ppt
Tips for Creating an Emergency Health Information Card: http://www.preparenow.org/tipcrd.html
