Glossary

Glossary of Accommodations and Supports for Patients with Communication Disabilities

This resource is intended as a guide when considering communication accommodations and supports for patients who have communication disabilities. It is not intended to be comprehensive or prescriptive.

General Terminology

Effective Communication: Effective communication is the successful joint establishment of meaning wherein patients and health care providers exchange information, enabling patients to participate actively in their care from admission through discharge, and ensuring that the responsibilities of both patients and providers are understood. To be truly effective, communication requires a two-way process (expressive and receptive) in which messages are negotiated until the information is correctly understood by both parties. Successful communication takes place only when providers understand and integrate the information gleaned from patients, and when patients comprehend accurate, timely, complete, and unambiguous messages from providers in a way that enables them to participate responsibly in their care (The Joint Commission: Advancing Effective Communication, Cultural Competence, and Patient and Family-Centered Care. A Roadmap for Hospitals. Oakbrook Terrace IL: The Joint Commission, 2010, p.1)

Communication Access: Refers to accommodations and supports that a patient may need for effective two-way communication with healthcare service providers and support personnel throughout the continuum of care. This includes face-to-face interactions to discuss health issues; communication over the telephone, at meetings and case conferences; reading and understanding of healthcare information, consent forms and prescriptions; and completing and signing medical forms and consent documents.

Communication Barrier: Any obstacle that prevents the effective exchange of ideas, thoughts, and questions in face-to-face, group or telephone interactions, and via reading and writing. Barriers include information that is presented in ways that the patient cannot understand what is being said and/or written, and/or not having effective communication methods, aids, supports, time or opportunity to negotiate their health care issues, express opinions, ask questions and provide consent to treatment.

Communication Accommodations: Items that enable patients with communication disabilities to understand and communicate effectively. Examples are picture/photo/text cards/ video explanations/ symbol or letter boards, communication devices, accessible call bells, voice amplifiers, hearing aids, glasses and visual aids, plain language materials, easy reading, and alternate-format documents. Some communication accommodations are personalized; others are generic to a particular medical setting (e.g., accessible call bells, pain scale, text in plain language).

Communication Strategies: Best practice techniques that can be used by a healthcare provider, family member, or support worker when communicating with a patient who has a communication disability. Examples of communication strategies include providing information in ways the patient can hear and understand and ensuring the person has the means, opportunity and time to communicate their messages.

Communication Supports: Refers to assistance and services that a patient may require over and above the best practice communication strategies that a healthcare provider can use. Communication support can be informal and provided by a person who knows the patient well, such as a family member or support worker and who has been authorized by the patient to assist with communication. In some situations, communication support may be formal and provided by a sign language interpreter, intervenor, translator, or speech-language pathologist.

Patients who may have Communication Disabilities

Patients with Communication Disabilities: Patients with communication disabilities are diverse and are represented across all ages, ancestry, colour, race, ethnic origin, linguistic, intellectual abilities, creed/spirituality, gender identity, sexual orientation, financial, family, marital status and cultural communities. In addition, they may or may not have additional (intersecting) disabilities such as physical, intellectual, sensory, learning ability and mental health issues.

Speech, Language and Communication Disabilities: Refers to a range of disabilities that can impact one or more areas of a person’s ability to speak, hear, read, write, and/or understand what is being said. Disabilities that impact on communication include cerebral palsy, intellectual disability, autism spectrum disorder, multiple sclerosis, Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s Disease), aphasia after a stroke, dementia, acquired brain injury, head and neck cancer, Parkinson’s disease and other disabilities.

Patients include children and adults with pre-existing disabilities that affect communication; patients with recent onset (first time) communication disorders (stroke, acquired brain injury); and patients with recent or temporary communication limitations due to medical interventions (intubation, tracheostomy, ventilator, laryngectomy).

Deaf: A person who cannot understand speech (with or without hearing aids or other devices), uses sound alone (i.e. no visual cues such as lip-reading), and who depends upon visual rather than auditory communication. “Visual means of communication” include sign language, lipreading, speechreading, and reading and writing. Such individuals are distinguished with the use of the word “Deaf” being capitalized.

Deafened: Individuals, who grow up hearing or hard of hearing and, either suddenly or gradually, experience a profound hearing loss. Deafened adults usually use speech with visual cues such as Communication Access Realtime Translation (CART) or computerized note-taking, speechreading, or a signed language.

Hard of Hearing: A person who has a hearing loss and whose usual means of communication is spoken language. This definition includes a broad spectrum of hearing loss, including those who are late-deafened and those deaf in childhood and educated orally.

Deafblind: A person who is Deafblind has a combined loss of hearing and vision to such an extent that neither the hearing nor vision can be used as a means of accessing information to participate and be included in the community.

Vision Loss / Low Vision: A level of vision loss or low vision that has been legally and clinically defined for persons with a central visual acuity of 20/200 or less in the better eye with the best possible correction, and/or a visual field of 20 degrees or less.

Sample Communication Methods and Accommodations

Communication methods: Communication methods include speech, vocalization, mouthing, body positioning, facial expressions, eye gaze, gestures, mime, sign language, adapted signs, writing, drawing, typing, selecting or pointing to pictures, photographs, symbols, written words and letters of the alphabet.
Lipreading/ Speechreading: Lipreading means watching the movement of the lips, jaw, and tongue to discern what sounds and words are being shaped and spoken. Only about 40% of the spoken language appears on the lips.

Speechreading involves understanding a person through a combined “look and listen” technique. The speech-reader sees visible movement and sometimes hears at least part of the message. This visible movement is not only lip, tongue, and jaw movement but also facial expression, eye expression, body language, the context in which the person is speaking, and whatever sounds one hears. All possible cues are utilized to assist in speechreading, including sight, amplified sound, and educated guessing.

Home Language: Refers to the language the patient typically uses at home and/or the language they are most comfortable or proficient in using. In addition to communication accommodations and supports, a patient whose home language is different from a healthcare provider’s language and who has difficulty understanding and communicating in the healthcare provider’s language, may require a language interpreter and/or translated written materials.

Preferred Communication Method: Refers to the patient’s preference in using their communication methods in a specific situation. For example, a patient may prefer to use a letter board or answer yes and no questions rather than using their speech generating communication device when lying in bed. A person may use sign language as their preferred communication method.

Communication Aids: Communication aids enable patients with speech and language disabilities to communicate. Examples include: pen, paper, letter board, picture board, speech generating device, artificial larynx, hearing aids, switches to operate call bells or devices, eye gaze technology, adapted call bells, baby monitor, pain scale, pictures that support comprehension; amplifier, and “In case of emergency cards”, etc. Communication aids can be generic or commercial for some situations (e.g., emergency room, ambulance, bedside, ICU), or custom made for an individual to reflect their specific communication needs.

Sample Accommodations and Supports for Reading and Writing

Accessible Information: Accessible information is easy to read and understood by the individual for which it is intended.

Alternative Format: Written information provided as an alternative to standard print, or handwritten information. Examples include large print, braille or electronic.
Large Print: Printed information enlarged and formatted in ways a person with low vision can read.

Accessible Text, Layout and Design: Digital and print materials that follow best practice guidelines for font, alignment, color contrast, layout and use of graphics.
Plain Language / Easy Read Documents: Writing that is clear, concise, well organized, and follows other best practices appropriate to the subject or field and intended audience.

Braille: A system of touch reading and writing for some persons with blindness, low vision or vision loss in which raised dots represent the letters of the alphabet.
PDF Documents: When posted online, a document, which has been coded and rendered pdf accessible, can be read out loud by a screen reader, enabling someone with vision loss to have the same access to information as someone with vision.

Accessible Forms: Accessible digital forms that can be completed using assistive devices and allow the user to take breaks and save their input as required.

Website: Accessible websites that comply with WCAG 2.0

Video: Videos that are captioned or subtitled.

Sample Communication Supports

Authorized Communication Assistant: An individual who is formally authorized by a patient with a speech, language and communication disability to assist them in communicating with healthcare providers. A communication assistant can be a family member, a support worker or someone else who is familiar with how the individual communicates. They may assist the patient in two-way communication with a healthcare provider as well as assist the patient with reading and understanding written information. They may assist with completing forms, signatures and note taking. An authorized communication assistant is not a substitute decision maker and does not have Power of Attorney.

Speech-Language Pathologist: A professional who conducts communication assessments, provides communication intervention services and recommends communication methods, aids and devices. A Speech-Language Pathologist is required to provide appropriate communication methods for patients who have no way to communicate; to participate in capacity assessments for patients with complex communication disabilities and to assist in situations where there is no familiar person to provide communication assistance or where there is a need for impartial, neutral communication assistance.

Communication Disorders Assistant or Communication Health Assistant: Works in a clinical capacity under the direction and supervision of a Speech Language Pathologist.
Translator: A translator interprets written text from one language to another.
Language interpreter: A language interpreter translates oral speech from one language to another.

Sign Language Interpreter: Enables a conversation between a member of the culturally Deaf community and people who speak another language, such as English and French. In Canada, the most popular types of sign language interpretation consist of American Sign Language (ASL) and langue des signes Québécoise (LSQ). Interpreters are knowledgeable in the sign language and culture of Deaf and hard of hearing persons, and the spoken language and the norms of the (hearing) majority culture.

Intervenor: Professionals who provide intervention to an individual who is deafblind. The intervenor mediates between the person who is DeafBlind and their environment to enable them to communicate effectively with and receive non-distorted information from the world around them.

Deaf Interpreter: Deaf individuals who are fluent in ASL or LSQ and have interpreting experience. They work together with a hearing interpreter to facilitate communication between a Deaf person and a hearing person.

Communication Access Realtime Translation (CART): CART is the live, word-for-word transcription of speech to text so that individuals can read what is being said in group settings or at personal appointments on a laptop or a larger screen. CART services can be provided on-site or remotely, in both English and French, via a secure website.
Other aids for people who are Deaf, deafened or hard of hearing: The Ubi Duo enables wireless real time text-to-text communication with groups of two to four people. There are also numerous personal amplification systems that facilitate communication.

Sample Personal Support Services

Personal Support and Attendant Services: Services that a person may need for positioning, mobility, assistance with eating and drinking and personal hygiene. A personal support worker or attendant may work for an agency or be employed directly by a person with a disability. Patients with pre-existing communication disabilities may require their personal support worker, or attendant, to provide these services to them when they are hospitalized.

Direct Service Provider: Within the developmental disabilities community, paid support staff may be referred to as direct support professionals, developmental service workers or developmental support professionals. These individuals are trained specifically to support people with developmental disabilities. Similar to PSW’s, they may or may not have additional training to assist with communication.

Accommodations and Supports in Consent and Capacity Situations

Communication assistance in consent and capacity situations: Patients with communication disabilities may require communication accommodations and supports within consent and capacity situations to understand what is being said, ask questions, and communicate their decision.

Alternate Decision Makers: Some patients with disabilities may have a legally appointed guardian, attorney for personal care, substitute or a supported decision maker. The involvement of these appointed persons in the decision-making process is necessary to enable the participation of the patient.

Sample Accommodations and Supports for Telephone Communication

Speech Generating Device: A person with a communication disability may use a speech generating device, (including a smart phone) to communicate over the telephone.
Authorized Communication Support person: A patient with a communication disability may want to authorize a communication support person to interpret their communication over the telephone.

Alternatives to Telephone: A person with a communication disability may require alternatives to telephone use, such as electronic messaging (i.e., email, text, live chat or instant messaging, fax), or video relay.

Message Relay System: A trained operator relays printed and/or spoken messages to and from communicators over the telephone.

 

 

Developed by Barbara Collier, CDAC with input from Sarah Blackstone, and members of Ontario’s Healthcare Standards Development Committee: Lorin MacDonald, Serge Falardeau, Marianne Park, Natalie Spagnuolo, Sandi Bell and Dr. Yona Lunsky