Ice Bucket Challenge Progress

 

Augmentative and Alternative Communication (AAC)

If you have been noticing some subtle changes in your voice and/or speech, there are health care providers who can help. A speech-language pathologist (SLP) is the member of your ALS team that addresses speech communication. Approximately 85% of people living with ALS will need some help with their communication at some point in the disease progression. It is the SLP’s responsibility to help address concerns and provide strategies to help support effective communication.

(Please Note: Reading all of this information at one time can be overwhelming to some people with ALS and their families. We highly recommend that you only access the information that pertains to your present circumstances.)

 

Augmentative and Alternative Communication (AAC) includes all forms of communication (other than oral speech) that are used to express thoughts, needs, wants, and ideas. We all use AAC when we make facial expressions or gestures, use symbols or pictures, or write. AAC is augmentative when used to supplement existing speech, and alternative when used in place of speech that is absent or not functional. Augmentative systems are used by individuals who already have some speech but are either unintelligible or have limited ability to use their speech. In such cases, other modes of communication are used to support or supplement what the person says verbally. Alternative communication is the term used when a person has no speech; individuals must completely rely on another method to make all of their ideas, wants, or needs known.

Individuals with severe speech or language challenges rely on AAC to supplement existing speech or replace speech that is not functional. Special augmentative aids, such as picture and symbol communication boards and electronic devices, are available to help individuals express themselves, thus increasing social interaction and feelings of self-worth.

 

Types of AAC Systems: 

If an individual cannot use speech to communicate effectively, there are numerous options to consider:

Unaided Communication Systems rely on the user's body to convey messages. Examples include gestures, body language, and/or sign language. Unaided communication requires some form of motor control. Many times, we use unaided AAC without even knowing (e.g., raising of the eyebrows, pointing, darting of the eyes, shrugging your shoulders, etc.).  If your speech is impaired, these slight movements may help to provide additional information about the message you wish to convey. 

Another form of unaided AAC is sign language. American Sign Language (ASL) requires brisk, detailed movements.  The system is complex and requires the correct sequencing and coordination of the upper body. If a person is experiencing difficulty with moving, sequencing, or controlling certain body parts, ASL may not be an appropriate solution to their speech changes. Contact your local SLP and ask about ways to address these concerns.

 

Aided Communication Systems require the use of tools or equipment in addition to the user's body. Aided communication methods can range from paper and pencil, to communication books or boards, to devices that produce voice output (speech generating devices or SGD's) and/or written output.  There are two types of unaided AAC: No/Low-Tech and High-Tech.

Aided AAC Graph

No/Low-Tech AAC are communication aids that do not require batteries or electricity to be operated. Some examples of No/Low-Tech AAC are communication boards, flipbooks, picture books, and symbol books. Individuals can communicate by pointing, using a laser pointer, a mouth stick, or by partner assisted scanning. These techniques may require some training with a SLP who often times can also help with assembling personalized communication books and alternative access methods. Some examples of No/Low-Tech are provided below.

Communication A-E-I-O-U Book
Communication Flip Book
Communication Needs Board
How to Use Low-Tech Communication Boards (Video)
Using a Laser Pointer and Communication Board  (Video) 

 

High-Tech AAC are communication aids that allow the storing and retrieval of messages and often come with speech output capabilities. Electronic communication aids allow the user to use picture symbols, letters, and/or words and phrases to create messages. Some devices can be programmed to produce different spoken languages. Some examples of High-Tech AAC are the MegaBee, Boogie Boards, modified Smart Devices, and Speech Generating Devices (SGDs). These examples vary in weight, size, storage space, and cost.

Many High-Tech AAC devices require formal evaluation and training with an SLP who will conduct a communication evaluation to determine any speech or language deficits. Following the evaluation, the SLP may make a recommendation for the use of a High-Tech AAC device and will recommend the most effective access method. The SLP will look for the most reliable and effective way a patient can use their device to communicate and can help with training on how to use the device, message and voice banking storage, phrase storage, and access training. 

It is important to remember that appropriately credentialed and specialized SLPs should conduct AAC evaluations and treatment. Consistent with the World Health Organization (WHO) framework, AAC system intervention is designed to:

Capitalize on strengths and address weaknesses related to underlying structures and functions that affect use of an AAC system;
Facilitate the individual's activities and participation by assisting the person to acquire new skills and strategies for using the AAC system effectively (e.g., in novel situations and with unfamiliar partners);
Modify contextual factors to reduce barriers and enhance facilitators of successful communication and participation, and to provide appropriate accommodations and other supports, as well as training in how to use them in conjunction with the AAC system.

AAC system intervention considers the abilities, needs, and preferences of the person in need and of those with whom they will communicate with (e.g., family, caregivers, educators, service providers). It also considers the environment in which the AAC system routinely will be used. Depending upon assessment results and the age/stage and life circumstances of the person in need, intervention addresses the following:

Identify and educate the patient/client, family/caregivers, and relevant others in the AAC system's operation
Plan for optimum patient/client use, including education in maintaining the AAC system and programming updates and modifications for conversational and other uses.
Use the AAC system while targeting any other speech-language (spoken or written) and communication goals and objectives appropriate to activity/participation needs and the individual's age and abilities.

*These resources are free and available due to the generosity of Boston Children’s Hospital, ALS Augmentative Communication Program.

 

AAC Systems Capabilities

AAC systems are diverse: unaided communication uses no equipment and includes signing and body language, while aided approaches use external tools. The symbols used in AAC include gestures, photographs, pictures, line drawings, letters and words, which can be used alone or in combination. Body parts, pointers, adapted mice, or eye tracking can be used to select target symbols directly, and switch access scanning is often used for indirect selection. Message generation is generally much slower than spoken communication, and as a result, rate enhancement techniques may be used to reduce the number of selections required. These techniques include “prediction”, in which the user is offered guesses of the word/phrase being composed, and “encoding”, in which longer messages are retrieved using a pre-stored code.

AAC systems typically change over time depending on severity of speech impairment, physical status, and the individual's communication needs. AAC may consist of using an alphabet board to cue the listener to the first letter of the word being spoken, and may be used with those less familiar with the individual. In the later stages, AAC often becomes the main communicative method, although familiar conversation partners may still understand some spoken words. The method of access to a communication device depends on the type and severity of the disease. It is important to note that individuals with ALS may experience changes in their function and speech production. The SLP plays a crucial role in assessing these changes and providing strategies/methods that facilitate effective communication.

Forms of AAC

 

What is No-Tech? Unaided, or No-Tech, AAC strategies rely on the user’s body to convey messages. Unaided strategies include gestures, body language, and/or sign language. Keep in mind that unaided communication strategies must be understood by others to be effective.

What is Low-Tech? Low-tech communication aids are defined as those that do not need batteries, electricity or electronics to meet the user's communication needs. These are often very simple aids created by placing letters, words, phrases, pictures and/or symbols on a board or in a book, which may be accessed. Depending on physical abilities and limitations, users might indicate the appropriate message with a body part, a head or mouth stick or light pointer. Alternatively, they might indicate yes or no as a listener scans through the possible options.

What is High-Tech? Electronic communication devices are used by individuals that are unable to make themselves verbally understood. Many different electronic communication systems are available. Some communication systems are custom designed for a specific user or can only be used in specific situations.  For example, a communication system that works through a desktop computer cannot travel with the patient to doctor visits, but a laptop or notebook computer is more portable and will allow the patient to travel with the system. 

Dedicated and Undedicated Systems: Electronic communication devices can be broken down into two categories: dedicated and undedicated systems.  A dedicated device is strictly a communication device—the only thing it does is speak.  Undedicated devices, which are computer based, not only speak, but also feature all the functions of a regular PC or laptop—word processing, e-mail, web surfing, etc.

Voice output on a device is either digitized or synthesized.  A digitized voice utilizes recorded human speech.  Synthesized speech devices use computer- generated speech.  There are pros and cons to both types of devices.  Digitized devices, although more “normal” sounding, are limiting because they can only say the words or phrases programmed on the device.  They do not allow for free-thinking.  Synthesized devices allow the user to have pre-programmed phrases or words and spell out novel thoughts.  Communication devices can be accessed several ways.  The term access refers to the way the individual will operate the communication system.

An access method for an individual will often change as the disease progressively leads to weakening of different areas of the body.  This means that a patient, who at one-point uses hands for communication, may lose this ability and eventually may need to use another access method.  It is important for individuals living with ALS to know that communication does not have to stop simply because hands become weak and typing is no longer possible. There are alternative access methods that use different body parts (e.g., head, legs, feet, etc.). Special software allows the user to "dwell" on a letter (timed stoppage on a letter) and the computer will then type the letter they are dwelling on.

For more sophisticated computer access there are several “eye gaze” computer systems. These high-priced specialty computers rely on eye movement for activation.  This type of machine is only used by individuals that have little or no muscle movement left.  To use eye gaze systems, the user must remain still to use this computer. Individuals who utilize an eye gaze device will require a mount to hold the computer in place to effectively communicate.

How do I know which AAC device is best? Many families often inquire about specific devices they’ve heard about or have seen others use. It is important to remember that the progression of ALS is different for everyone. Approaching health care providers with questions about SGDs is a useful way to learn about the different AAC approaches. The best health care professional to approach about the use of AAC is a speech language pathologist, or SLP. An SLP will conduct an assessment to determine what strengths and challenges a patient encounters. The evaluation of a user's effective access and requirements for AAC will include the individual's motor, visual, cognitive, language and communication skills. The evaluation requires the input of family members and caregivers, who have direct insight into the patient’s daily routine, specific needs and wants. Respecting ethnicity and family beliefs are key to a family-centered and ethnically competent approach. 

The ALS Association, Florida Chapter is happy to assist you with your communication needs. Contact your Regional Program Manager for help navigating the insurance system to obtain speech-generating devices (SGDs) and/or to arrange for loaner equipment. If you have any questions about AAC, you can also speak with your SLP or contact the Assistive Technology Manager at 813-637-9000 ext. 118.

Additional Resources and Learning Materials

Resource Guide 9: Changes in Speech and Communication Solutions
This resource guide covers how speech can be affected by ALS and explores a variety of techniques, technologies, and devices available for improving communication. By maintaining communication with others, you continue to make a significant difference in their lives, while retaining control of your own.

Basics of Augmentative and Alternative Communication (AAC) (Video) 

Proactive Strategies for Speech:

How to Use ModelTalker at Home 

Strategies for Using Your Speech:

Voice Amplification

AAC Apps for Your Smart Device:

Apple Products
Android Products
Text to Speech Apps and Reviews

*Please note that information supporting this webpage came from outside resources (i.e., ASHA, USSAAC)

Please Note: The ALS Association Florida Chapter provides training only on speech-generating devices (SGDs) that are within the Florida Chapter’s Assistive Technology Loan Program. Contact your Regional Program Manager for help navigating the insurance system to obtain training with your SGD.