In Chapter 1 we defined low technology as inexpensive devices that are simple to make and easy to obtain. Many types of AAC approaches fit into this category. Examples of low technology approaches are shown in Figure 11-2. The communication cards shown in Figure 11-2, A, are on a chain worn around the neck of the person. The communication book shown in Figure 11-2, B, and the board or display shown in Figure 11-2, C, are based on letters/words/phrases or graphic symbols, respectively. The communication display in Figure 11-2, D, is an example of an activity-specific communication display that is placed by the door to facilitate the choosing of a recess activity. Other low-tech approaches, as described later in this chapter, may include placing symbols on items around a room to develop labeling skills, or using miniature objects as labels and formal systems such as the Picture Exchange System (PECS) to teach requesting.

Figure 11-2 Low-tech communication aids.

High-Tech AAC Systems

The term “high-technology AAC” refers to devices that have electronic components. Figure 11-3 illustrates some examples of high-tech AAC devices. There are two broad categories that are discussed in Chapter 5: direct selection and scanning. Some devices with limited functions are called “lite” technologies. The light pointer in Figure 11-3, C, is an example of a direct selection lite technology that has greater range and is easier to use than a mechanical head pointer. The lite technology devices in Figure 11-3, B and C, use scanning to choose between a few items using a single switch. “High technology” devices have many choices and typically provide speech output. They can use either direct selection (Figure 11-3, E) or scanning (Figure 11-3, F). Some AAC devices use mainstream technologies (e.g., computers and cell phones) with special software. These can use direct selection (Figure 11-3, G) or scanning (Figure 11-3, H).

The AAC Team

Finding the right AAC system for an individual requires a team approach. Each member of the AAC team has important roles and responsibilities: The client and family have the greatest knowledge of the daily communication needs of the person who has CCN. Family members are often the individual’s primary communication partners and serve as advocates and facilitators. The speech-language pathologist typically has the greatest general understanding of communication in general and can assess language and communication needs, abilities, and skills; select AAC materials and technologies; and develop a training program for the individual, caregivers, and family. The speech assistant may be responsible for programming the device with vocabulary for the individual and implementing the training program to teach the individual, family, and staff to use AAC system components effectively. The teacher sets educational goals and oversees classroom implementation of each child’s AAC system and has knowledge of literacy, social interaction, and education. The PT and/or OT carry out the motor evaluation, address seating and positioning needs, evaluate physical access to the AAC system, and have knowledge of how to support writing, drawing, and other activities of daily living. The positioning of the communication device for use (e.g., mounting to a wheelchair, locating on a table, or attaching it to the person for walking), the positioning of the control interface (see Chapter 6), and ensuring that the person is properly positioned to access the AAC system are often the responsibilities of a PT-assistant and OT assistant. In a classroom setting, an educational assistant may take on the roles of programming specific vocabulary into the device to meet educational goals and training the individual to use the device effectively for school work. In a work setting, programming and training may fall to a job coach. Family members may also be involved in programming and helping the individual learn to use the device effectively. These individuals support the person in the development of skill in using AAC to meet the person’s communication needs. They also may receive instruction that allows them to add vocabulary, set up the AAC system for daily use by the person, and take care of maintenance tasks such as charging batteries and cleaning the device. Key team members such as family, friends, co-workers, fellow students, residents living in the same group home, and employers are often referred to as “natural supports” because they have an ongoing relationship with the individual. Occasionally physicians, psychologists, vision specialists, and other professionals also play a role on AAC teams.

The Importance of Augmentative Communication in the Lives of People with Complex Communication Needs (CCN)

First person accounts of AAC users provide an important perspective. Christopher Nolan,⁵⁷ a man with cerebral palsy, wrote in the third person (as Joseph) about the importance of attentive and responsive communication partners. “Such were Joseph’s teachers and such was their imagination that the mute boy became constantly amazed at the almost telepathic degree of certainty with which they read his facial expression, eye movements, and body language. Many a good laugh was had by teacher and pupil as they deciphered his code. It was moments such as these that Joseph recognized the face of God in human form. It glimmered in their kindness to him, it glowed in their keenness, it hinted in their caring, indeed it caressed in their gaze.” (p.11)

AAC systems can enhance interaction, but they can also become the center of attention, detracting from the real goal of interpersonal interaction, as William Rush ⁵⁹ noted:

“My new friend (Wendy) was good looking. She was just over five feet tall and had brown eyes that matched the color of her shoulder length hair. Her skin showed a summer tan and she had a dynamite smile. ‘Did he show ya all his electronic stuff?’ one of my dorm mates asked her. “Go on, Bill, show her.” So I demonstrated the controls for my lights and clock radio. I showed off my door opener, which I could control via a radio transmitter attached to the Plexiglas tray on my wheelchair. She was impressed with the space-age technology. ‘Hey, show her your wheelchair and how it works. I’ll never understand how it works. It baffles me,’ another dorm mate said. So, wondering if I should sell tickets, I wheeled about the room. I demonstrated how I went straight, reverse, and turned left and right. I was angry at my dorm mates because I was a man, not a side show freak. My wheelchair was a tool for my mobility, not a novelty. Why couldn’t they see that? And why couldn’t they see that I was trying to get to know Wendy. Why didn’t they understand I had a right to my privacy just as they did? As I was wheeling around the room, I noticed that Wendy was typing something. I was disappointed in her. I thought she knew that I could hear and that she didn’t have to write things to me. Apparently I was wrong. When I was done showing my electric marvels to her and the guys, I rolled back to my typewriter to read, “I wish they would go, so we could talk by ourselves.” They finally left and we finally got to talk. Our friendship had started.” (p. 137)

The loss of speech can also occur later in life. Doreen Joseph ³⁸ lost her speech following an accident. She described her situation: “I woke up one morning and I wasn’t me. There was somebody else in my bed. And all I had left was my head. Speech is the most important thing we have. It makes us a person and not a thing. No one should ever have to be a ‘thing.’” (p. 8) Sue Simpson⁶⁴ lost her speech after a stroke at age 36. She wrote: “So you can’t talk, and it’s boring and frustrating and nobody quite understands how bad it really is. If you sit around and think about all the things you used to be able to do, that you can’t do now, you’ll be a miserable wreck and no one will want to hang around you for long.” (p. 11)

Partners of People with CCN Who Rely on AAC

Communication almost always involves a partner who may be in the room, on the phone, or a continent away on e-mail. Some “partners” may be merely imagined, as when someone writes a story. The “Circle of Communication Partners” (Figure 11-4) is helpful in defining the range of partners that a person with Complex Communication Needs who relies on AAC might encounter.¹³ The first circle represents the person’s life-long communication partners. This is primarily immediate family members. The second circle includes close friends (e.g., the people you tell your secrets to). These are often not family members. Acquaintances such as neighbors, schoolmates, co-workers, distant relatives such as aunts and cousins, the bus driver, and shopkeepers are included in the third circle. The fourth circle is used to represent paid workers such as a doctor, speech-language pathologist (SLP) or a physical therapist (PT), occupational therapist (OT), occupational therapy assistant (OTA), physical therapy assistant (PTA), speech assistant, teacher, educational assistant, or babysitter. Finally, the fifth circle is used to represent those unfamiliar partners with whom the person has occasional interactions. This circle includes everyone who doesn’t fit in the first four circles.

Figure 11-4 Circle of communication partners.

Table 11-1 shows that as we move from circle 1 to circle 5 the modes of communication required to communicate with people in each circle vary.¹⁷ For example, gestures and speech (even if it difficult to understand) are often preferred modes in circles 1 and 2. Circle 2 also includes some non-electronic communication boards as well as telephone and e-mail. Circle 4 reflects the school, work, and professional provider partners and therefore a wide range of modes are used. Circle 5 relies primarily on non-electronic communication boards, books, and SGDs of various types.

Table 11-1

Each of the Circles in Figure 11-4 Has Different Partners and Modes of Communication

Circle	Partners	Commonly Used AAC Modes and Techniques*
1	Life-long communication partners, immediate family members	Facial expressions, gestures, vocalizations, speech, and manual signs
2	Close friends (i.e., people who you tell your secrets to), often not family member	Facial expressions, gestures, vocalizations, non-electronic communication boards and books, telephone, and e-mail
3	Acquaintances such as neighbors, schoolmates, co-workers, distant relatives (such as aunts and cousins), regular shop keeper or bus driver	Facial expressions, gestures, vocalizations, low-tech and high-tech dedicated SGDs, telephone, and e-mail
4	Paid workers such as a speech-language pathologist (SLP) or a PT, OT, OTA, PTA, speech assistant, teacher, teacher assistant, or babysitter	Facial expressions, gestures, vocalizations, manual signs, non-electronic communication boards and books, writing, low-tech and high-tech dedicated SGDs, and mainstream-based SGDs
5	Unfamiliar partners with whom the person has occasional interactions (e.g., a bus driver and seldom-visited or new shop keepers)	Facial expressions, gestures, non-electronic communication boards and books, low-tech and high-tech dedicated SGDs, and mainstream-based SGDs

^*Blackstone SW and Hunt Berg M: Social networks: a communication inventory for individuals with complex communication needs and their communication partners – Inventory Booklet, Monterey, Calif.: Augmentative Communication, Inc., 2003.

Attitudes About and Acceptance of AAC

McCarthy and Light ⁵¹ reviewed 13 research studies on partners’ attitudes toward individuals who rely on SGDs. They identified several factors affecting attitudes: (1) characteristics of typically developing individuals, (2) characteristics of the person using AAC, and (3) characteristics of the AAC system. These are elements of the social context of the HAAT model (see Chapter 2). Attitudes toward individuals who use AAC vary across the parameters of gender, type of disability, age, experience of the user of AAC, experience and familiarity with the disability and AAC by the partner, and social context. Attitudes appear to be formed by the interaction of many of these factors. Some of these attitudes are summarized in Box 11-1.

Box 11-1 Attitudes of Partners Influence AAC Effectiveness

What the research tells us:

Attitudes about and acceptance of AAC

Children

• The attitudes of children who do not have disabilities toward children who do and who use AAC is influenced by their familiarity with children who have disabilities (i.e., whether the non-disabled students had a classmate with a disability) and by age (older children are less positive than are younger children).⁴

• In general girls are more positive toward disabled peers than boys.⁵

• Children who use AAC communicate mostly through responses and their typically developing peers initiate almost all of the requests.²⁴

• The longer the messages produced (2-word vs. 4-word utterances), the more positive are peers’ attitudes toward the child using AAC. Much of the interaction among peers involves expressions of humor and intimacy (e.g., laughing, joking, teasing, tickling, etc.).⁴

• Attitudes of peers toward an AAC user do not appear to be affected by the type of AAC system used.⁵

• The use of voice output led to more positive peer attitudes than when the output was only visual (letters on a display).⁴⁹

School settings:³⁹

• Unequal status with classmates and dissimilar interests lead to social exclusion for students who rely on AAC.

• Often peers speak to the teacher or teacher’s assistant rather than directly to the student.

• Teachers are concerned about lack of academic gain.

• Some device features (e.g., speech synthesis) are perceived as disruptive to other students.

• Teachers require time to adjust to the idea of having students with disabilities in class.

Employment:⁵³

• Employers and co-workers are influenced by workers who use AAC.

• Benefits for the worker are social interaction, personal enjoyment, and financial gain.

• Benefits to the employer include positive impacts on other employees, high quality of work performance, and loyalty of the employee.

• Employment challenges:

• Finding a good job match to individual skills

• Communication challenges (e.g., noisy AAC device, speaker phone use)

• Difficulty with typical office tasks (e.g., manipulation of paper, telephone use)

• Education or vocational skill level too low

• Lack of knowledge of work culture and physical challenges necessitating assistance from other workers

• Financial (e.g., insurance costs to company)

Communication needs that can be served by AAC

We as humans communicate in a myriad of ways depending upon the circumstances. If speaking and/or writing are not possible, we search for (and find) other ways of communicating. People with complex communication needs (CCN) are often unable to speak and write so that others can understand them. This can impact performance of the activities of daily living even if assistance from an attendant is available. AAC approaches help with face-to-face communication, as well as with communication on the phone and across the Internet. Writing includes such activities as drawing, plotting graphs, and mathematics. These are all the things that we normally do using a pencil and paper, computer, calculator, and other similar tools.

Light (1988)⁴³ describes four goals of communicative interaction: (1) expression of needs and wants, (2) information transfer, (3) social closeness, and (4) social etiquette. Expression of needs and wants allows people to make requests for objects or actions. Information transfer allows expression of ideas, discussion, and meaningful dialogue. Social closeness serves to connect individuals to each other, regardless of the content of the conversation. Social etiquette is used to describe those cultural formalities that are inherent in communication. For example, students will speak differently to their peers than to their teachers.

Dowden and Cook (2002)²⁸ defined three types of AAC communicators. Emergent communicators have no reliable method of symbolic expression and they are restricted to communicating about here and now concepts. Context-dependent communicators have reliable symbolic communication, but they are limited to specific contexts because they are either only intelligible to familiar partners, have insufficient vocabulary, or both. For example, a child may have symbols and understanding for specific school activities such as circle time or for interacting with their friends, but lack general vocabulary for going shopping or ordering at a restaurant or other typical activities of daily living. Independent communicators are able to communicate with unfamiliar and familiar partners on any topic. Each of these communicators has different needs and goals.

In this chapter communication needs are discussed for three major types of disorders that affect speech and language: (1) individuals with developmental disorders, (2) individuals with acquired conditions, and (3) individuals with degenerative conditions. While acknowledging that the focus of AAC interventions may vary across these groups, there is also substantial overlap in the issues we face when communication is severely limited, no matter what the causes may be.

AAC for Individuals with Developmental Disabilities

Because the development of speech, language, and communication begins at birth, early intervention is important. Effective AAC interventions for children with developmental disabilities require that AAC be integrated into the child’s daily experiences and interactions, and that it take into account what we know about child development.⁴⁸ For example, many young children do not have the physical or cognitive skills to learn to use current AAC selection techniques (e.g., scanning or encoding), and thus are unable to access some AAC systems. Also, the design of current hi-tech AAC technologies often requires a child to stop playing in order to use a communication device. A more desirable approach is to design AAC technologies and strategies that incorporate the use of AAC into the child’s play activities so the child can talk about her play or interact with peers while engaged in the activity. In short, to be effective the design, type, and layout of the AAC system components should match the desires, preferences, abilities, and skills of those who rely on AAC systems. This is often called “feature matching.”

A major concern for parents is whether the use of AAC will impede their child’s development of speech. Research data puts all such fears to rest ¹⁷. In fact, research has shown that the use of AAC does not interfere with speech development and may enhance the development or return of speech. There are a number of possible explanations for this, including increased acoustic feedback (from voice output SGD); increased experience with conversational turns and other communicative functions; reduced pressure to speak, which releases motor stress; and the development of an internal phonology due to AAC systems use.¹⁸ Research shows that children with a broad range of developmental disabilities can benefit from AAC interventions. Developmental disabilities include children with cerebral palsy, intellectual disability, Down syndrome, other genetic disorders, and autism spectrum disorder (ASD).

Cerebral Palsy

Cerebral palsy is a non-progressive motor impairment due to a lesion or anomalies of the brain arising in the early stages of its development.⁶⁶ Cerebral palsy syndromes describe motor disorders characterized by impaired voluntary movement resulting from prenatal developmental abnormalities or perinatal or postnatal central nervous system (CNS) damage. It is primarily a disorder of muscle tone and postural control. Individuals who have cerebral palsy will often exhibit apraxia, which is the inability to perform motor activities even though sensory motor function is intact and the individual understands the requirements of the task.²³ Primitive reflexes, characterized by immediate and automatic movement performed at a subconscious level, also accompany cerebral palsy.³⁶ Typically these reflexes are inhibited or (more often) integrated into volitional movements in order to control posture and perform basic movement patterns as the infant develops. Cerebral palsy may affect the degree to which these reflexes are integrated and some reflex patterns persist into adulthood for those with CP. The primitive reflexes that most commonly influence AT use are the asymmetrical tonic neck reflex (ATNR) and the symmetrical tonic neck reflex (STNR). The impact of these on AAC use is shown in Figure 11-5.⁸

Figure 11-5 The asymmetric tonic neck reflex (ATNR) (left) and symmetric tonic neck reflex (STNR) (right) reflexes can impact AAC system use. (From Beukelman DR, Mirenda P: *Augmentative and alternative communication: management of severe communication disorders in children and adults,* ed 3, Baltimore, 2005, Paul H. Brookes)

CP is also characterized by variation in muscle tone ranging from increased tone (referred to as hypertonicity or spasticity) to low tone (referred to as hypotonicity). In an individual child the tone may be mixed, may vary over the course of the day, or vary depending on the child’s position.⁶⁶ This altered muscle tone has an impact on motor control required for the use of AAC devices. Oculomotor function is also abnormal (problems with eye movements) in many children with CP. Duckman (1979)²⁹ found that 92% of the children with CP had oculomotor dysfunction of some type. This finding has direct bearing on tasks that require frequent redirection of gaze, such as looking at a keyboard to find the desired character and then looking at a display or screen to monitor the selections.

As Scherer (1998)⁶¹ points out, the person who is born with cerebral palsy is likely to have adjusted to the disability and developed strategies that help accommodate for the lack of coordinated motor control. For example, some individuals are able to use a primitive reflex to initiate a movement. Others have learned to position equipment and materials in order to maximize the motor control they have. These individuals are inclined to view assistive technology as opening up new opportunities for them and they often apply their developed strategies to the control of these devices.

Case study 11-1 Meeting a Congenital Need for AAC

Joyce is 39 years old. She has cerebral palsy and she currently lives with her parents. Her speech is dysarthric and she is unable to use a pen or pencil for writing. Unaided communication modes include head nods and eye gaze. Joyce currently uses a switch mounted near her knee to control her scanning communication device, which has synthesized speech output and a small word-processing program for writing. To meet Joyce’s need to activate a call device for emergency help over the telephone, she uses an alarm tied into a 24-hour surveillance company and activated by a separate switch using her left arm. She uses her left arm for the emergency call device because this movement is less limited by being supine in bed than is knee movement. Also, when she is seated in her wheelchair, left arm use does not interfere with either her powered mobility or her communication, since they use other control sites.

List the steps you would take to evaluate Joyce’s success with these systems.

Autism Spectrum Disorder (ASD)

Autism Spectrum Disorder (ASD) is characterized by significant social communication challenges throughout life that reflect impairments in social interaction and in verbal and non-verbal communication as well as restricted, repetitive, stereotypical patterns of behavior, interests, and activities.¹⁴ Early intervention (starting as young as two years) improves outcomes for children with ASD. These children often have difficulty with joint attention (i.e., coordinating attention between people and objects) and with understanding and using symbols. Approximately one-third to one-half of children with ASD do not use speech functionally.¹⁴ The learning styles of children with ASD show a strong preference for static information (e.g., visual information that doesn’t change). As a result, they often benefit from the use of “visual supports” (e.g., printed guides that provide cues such as a list of common phrases). Because speech and other elements of conversation are transient, AAC devices and communication displays that utilize static visual symbols provide possible assistance for the child with ASD. Also, because of their dependence on rote or episodic memory, children with ASD often benefit from contextual clues and prompts. However, this can lead to them becoming prompt or context dependent and can decrease the carryover of skills. Thus, AAC interventions that extend the use of language and appropriate communication behaviors across different contexts and partners are needed. Blackstone (2003)¹⁴ argues that AAC can be effective for children with ASD because it addresses both their unique learning styles and communication needs.

Children with ASD can use no-tech (e.g., manual signs) and high- and low-technology approaches to AAC.⁵⁴ At this time, there is no clear evidence that one approach is superior to any other. The use of total communication (speech and manual signing) provides advantages because there is no need to care for or operate a device and because it promotes more natural forms of communication. However, not all children (or their partners) do equally well with this approach.

Some children develop more functional communication using low-tech–aided systems. The Picture Exchange Communication System (PECS)* is one widely used example. Voice-output communication aids can also support interactions. For example, Schlosser and Blischak (2001)⁶² suggested that electronically generated speech may be beneficial for children with ASD who have difficulty processing natural speech. Also, computer-aided instruction may help children with ASD attend to instructions and prompts when provided via electronic speech output. There are many considerations in choosing between the many available AAC approaches, including an individual’s preferences, ease of learning, effect on the development of speech and language, ability to use the approach functionally across partners, and the communication tasks the person needs to accomplish and contexts in which they take place. Finally, the degree of partner support and responsiveness is considered. Current best practices rely on clinician judgment as much as evidence because current research on the use of AAC approaches for individuals with ASD is promising, but inconclusive, in each of these areas.

AAC for Individuals with Acquired Disabilities

Adults with acquired disabilities such as traumatic brain injury (TBI), aphasia, and other static conditions may require the use of AAC interventions as part of the rehabilitation process.⁷ Persons with recovering conditions (e.g., traumatic brain injury or stroke) often experience changing levels of motor, sensory, and/or cognitive/linguistic capability. This group of users may benefit from the use of AAC to help them adapt. While many people may be unable to speak or write directly after a severe head injury or brain stem or cortical stroke, most will recover some abilities over a period of months or years. However, over the long-term, some individuals continue to benefit from the use of AAC if speech is unintelligible. In this section traumatic brain injury (TBI) and aphasia are discussed as examples of individuals with acquired AAC needs.

Traumatic Brain Injury (TBI)

TBI can result in the loss of speech and often causes physical, cognitive, and language impairments.⁶,⁴⁶ The motor impairment is often severe in TBI and the sequelae include problems with cognition (thinking, memory, and reasoning); sensory processing (sight, hearing, touch, taste, and smell); communication (expression and understanding); and behavior or mental health (depression, anxiety, personality changes, aggression, acting out, and social inappropriateness). These factors frequently hamper function and often are long-term outcomes that effect communication and other functions in very subtle ways, limiting the ability to access AAC.²² While the long-term recovery of speech is variable, immediately following the injury many individuals benefit from AAC interventions to support functional communication.

Beukelman et al. (2007)⁹ carried out a study of AAC use by individuals who had sustained a TBI. The individuals with TBI in this study generally accepted AAC recommendations, and none of the participants rejected AAC after receiving a low-tech or high-tech AAC option. When it did occur, AAC technology abandonment usually reflected the loss of a facilitator (a soft technology loss; see Chapter 1), not rejection of the technology (Box 11-2). Participants in this study relied predominantly on letter-by-letter spelling strategies primarily due to the interference of cognitive limitations with the ability to encode messages or utilize other message-formulation strategies. Beukelman et al. attempted to teach the use of encoding and/or word retrieval to several individuals with TBI who spelled their messages using AAC technology. Some were able to learn the encoding or prediction strategy in the intervention setting, but none used the strategy in their everyday communication, reporting that it was “too much work.”

Box 11-2 AAC and TBI

What the research tells us

TBI and AAC

• 68% of this sample was advised to utilize high-technology AAC devices.

• 94% of these individuals and their decision makers accepted the recommendations.

• After 3 years, 81% continued to use their AAC technology, 6% had not received the technology because of funding problems, and 12% had discontinued AAC device use because they did not have appropriate AAC facilitator support.

• 87% used letter-by-letter spelling, while the remaining 13% relied on symbols and drawings.

• Low-technology AAC options were recommended for 32% of the total group.

• 100% accepted the recommendation.

• After 3 years, 63% continued to use their low-technology AAC strategies at least part time.

• 37% discontinued use because they regained sufficient natural speech to meet their communication needs.

Aphasia

Persons who sustain a stroke often experience language difficulties that we collectively call aphasia. One lasting problem these individuals have is vocabulary retrieval or word-finding difficulties. There are several AAC-related approaches with potential for aphasia rehabilitation.³⁷ For example, individuals who can recall first letters and recognize a desired word from a list may use word prediction devices or software. The individual begins typing a letter and then the device predicts several words from which to choose (see Figure 5-11). There are many factors that must be considered when applying AAC in aphasia rehabilitation. Research supporting aphasia intervention using AAC is described in Box 11-3. Some people with severe aphasia learn to augment their speech and communication efforts by relying on gestures and an alternative symbol system.³⁷ However, while persons with aphasia may be able to use graphic symbols, many find it difficult to apply them socially or to generalize their use.

Box 11-3 AAC Can Provide Assistance for Individuals with Aphasia

What the research tells us

Aphasia and AAC

Speech feedback can provide additional monitoring of written work, which helps the person to identify and correct mistakes. King and Hux (1995)⁴⁰ describe the use of a talking word processor to increase writing accuracy for individuals with aphasia.

Garrett and Beukelman (1992)³² present a classification system for aphasic individuals that is useful in planning AAC interventions. This scheme guides intervention planning by describing five types of aphasic communicators: basic choice, controlled situation, augmented, comprehensive, and specific need. For each of these categories, the authors identify residual skills, intervention goals, and AAC skills and suggest AAC activities for both partners and the individual with aphasia.

Fox and Fried-Oken (1996)³¹ propose questions related to effectiveness, efficiency, and generalization in AAC aphasiology research.

One area of concern for future development in AAC is how best to represent meaning on AAC technologies for persons with aphasia.⁷

Case study 11-2 AAC Following Stroke

Eileen is a 62-year-old woman who has sustained a brainstem stroke and now requires maximal assistance for daily living. Eileen’s unaided communication modalities include isolated words, facial expressions, yes/no responses, and inflectional vocalizations. She also has two AAC devices. The first of these is a letter board, accessed by her eye gaze that she uses to indicate her needs and choices (Figure 11-2). The unaided systems and letter board have limitations. The unaided systems require significant amounts of interpretation by the partner, and the manual eye gaze device is slow because it relies on spelling and interpretation by her partner. These limitations are partially overcome by Eileen’s electronic AAC device, which she accesses using head movements to make selections with a head pointer using a reflective dot on her forehead (see Chapter 6). This device includes vocabulary storage so she can use whole words and phrases, and it provides synthesized speech output. These features allow Eileen to converse with more people, and they make it easier on the communication partner. Each of these devices contributes to the quantity and quality of her communication interactions.

Eileen’s daughter has just gotten engaged and is bringing her fiance to meet Eileen. How would you help her prepare for the visit?

=”p1295″>One commercial device designed specifically for persons with aphasia is the Lingraphica™, which organizes symbols by semantic categories (e.g., places, foods, and clothing) and includes synthetic speech output and animation of verbs (e.g., “walk” or “give”).* Lingraphica provides graphic building blocks which are called icons (small pictures, sometimes animated). The icons can be manipulated to generate messages using a cursor. Lingraphica also has applications that allow favorite icons, phrases, and videos selected on the Lingraphica to be transferred to the iPhone and iPod touch. The mobile accessory can be used as an AAC device for communication or for self-cueing and scaffolding (i.e., helping to generate expressive language by providing prompts). Other technological interventions for aphasia are focused on supporting specific communication tasks such as answering the phone, calling for help, ordering in restaurants or stores, giving speeches, saying prayers, or engaging in scripted conversations. These may be either paper-based systems or electronic devices.

Portraits (static pictures or other symbols) contain limited, usually decontextualized information (e.g., a picture of a person with a plain background), and additional information about the person(s) or object in a portrait must be generated by the individual with aphasia or speculated on by the communication partner.⁹ This spontaneous generation of additional specific and detailed information is difficult for individuals with severe chronic aphasia. An alternative approach uses Visual Scene Displays (VSDs) (see Figure 11-6 and discussion later in this chapter). VSDs use personalized digital photos of scenes and arrange these on a dynamic display device (these devices are described later in this chapter). Each element in a visual scene is pictured in its natural relationship and position to all other elements in the scene.⁵² The meaning of all elements and semantic associations are integrally tied together, creating a holistic context.

Figure 11-6 VSD layout for family outing or wedding (personalized). (From Blackstone S: Visual scene displays, *Augment Commun News,* 16(2):1–5, 2004).

VSDs enable individuals with severe aphasia to use familiar photographs to engage partners in interactions about multiple topics. In addition, the design of the technology makes it relatively easy for partners to provide conversational supports such as prompting with familiar reminders. The individual with aphasia and the communication partner co-construct “the gist” of the visual scene. Contextualized pictures are paired with text and voice output to communicate specific messages, ask questions, and/or provide support for the communication partner. Because of the dynamic nature of the display, the user is continually prompted regarding the available choices, reducing the individual’s need to rely on recall memory. It is also possible to use the same approach with paper-based displays. There is a template provided by the University of Nebraska at http://aac.unl.edu/intervention.html.

Case Study 11-3 AAC in a Adult Day Care Center

You work as a member of the transdisciplinary rehabilitation team in an adult day healthcare program. The program has participants with a variety of disabilities and needs, and some have difficulty speaking. The center offers nursing, social work, physical therapy, speech- language pathology, occupational therapy, a variety of activities, and meals. There is an Individual Program Plan (IPP) in place for each participant. Some participate in the program’s art activities in small groups with an instructor or aide; others are in supported employment for half days and in the center for the other half of the days. Other participants are in the center all day and they have occasional community outings with care staff to recreational sites, stores, and physical activity venues (e.g., swimming). You have been asked to help address the communication needs of four of these participants:

• A 25-year-old man with TBI living in an apartment with supported living services and a roommate.

• A 40-year-old man with severe intellectual disability and good fine motor control, who is ambulatory and living in a group home with other adults functioning at about the same level.

• A 19-year-old woman with cerebral palsy that limits her fine and gross motor abilities in all four limbs, who lives with her primary caregiver, her sister.

• A 67-year-old woman with aphasia secondary to a CVA, living at a rehab facility.

None of these individuals has functional speech that is consistently understood by either strangers or even their caregivers, who know them well.

What things are important to know as you prepare to attend the interdisciplinary team meeting to discuss these participants’ augmentative communication assessment needs and as you prepare to consult with the participants’ family members and/or caregiving staff?

AAC for Individuals with Progressive Neurological Conditions

A degenerative medical condition in which speech and/or language functions are gradually lost presents a different set of challenges for the person with complex communication needs (CCN) and for AAC interventions. For many conditions, multiple AAC modes are necessary as the disease progresses and motor skills and cognition decline. Persons with degenerative conditions often experience changing levels of motor, sensory, and/or cognitive/linguistic capability that require the adaptation of the human/technology interfaces to accommodate their changing motor and cognitive skills. In this section ALS is discussed as an example of a degenerative condition that significantly impacts communication.

ALS

Amyotrophic Lateral Sclerosis (ALS), also referred to as one of the motor neuron diseases, is a rapidly progressing neuromuscular disease that gradually reduces motor control until total paralysis results. It affects speech in the majority of cases (see Case Study 11-4). The spinal form of ALS affects one limb asymmetrically and spreads to other limbs and eventually to upper motor neurons and respiration.³³ Speech is affected in the later stages. The bulbar form of ALS primarily affects the muscles of speech, swallowing, and respiration, resulting in loss of speech earlier in the course of the disease.³³ While persons with ALS utilize the same AAC systems as others, there are unique factors considered during the intervention process. For example, it is not uncommon for someone to begin using a direct selection AAC system and later on require scanning due to loss of motor function. If this type of transition is not planned for initially by the interdisciplinary team, it can be very hard for the person to maintain effective interactions. However, it can be a very difficult topic for both the clinician and family to discuss. Families differ in their desire and ability to deal with the longer term implications of physical decline.¹¹ Some families prefer to “plan ahead” and consider future needs while others prefer to take things as they come. Some Speech Generating Devices (SGDs) can accommodate direct selection and a variety of indirect selection modes, so these are often recommended. ALS patients tend to use high-tech aids with strangers for conversation.¹¹ No-tech approaches, including “20 questions” (the person can answer yes or no by head nod, eye blink, or other means) or gestures may be most effective with family communication and to express basic needs. Because the no-tech approaches are only understood by family members, low-tech approaches such as letter boards are more often used with strangers.

Case study 11-4 AAC and ALS: Changing Needs

Mr. Webster was assessed for an AAC device shortly after he began to lose the ability to speak as a result of ALS. He received a direct selection spelling device, which he accessed using his right index finger. This device was highly effective for him, and he was fond of making lists of tasks to be done around the house, planning menus, and creating shopping lists for his wife and son, which allowed him to maintain his role as head of the household. Unfortunately, Mr. Webster eventually lost the ability to use his finger to type and was again referred for an AAC assessment.

A new device was recommended and purchased for him. This device utilized single-switch scanning accessed through eyebrow movement. This system was not effective for Mr. Webster. Several factors led to the difference in results between the two systems. First, there was an 11-month period between when he was unable to use the first system and the delivery of the second system. This time without a functional communication system probably contributed to a much more dependent role in the family for Mr. Webster, and he told us that he had “nothing to say” when we asked about his nonuse of the new system. His dependent role in communication also changed his role as head of the household. The new system was also more complicated to set up and to operate. It required his wife and attendant to learn more about the system, and he had to wait for one of them to set it up for him. The effort involved on everybody’s part seems overwhelming.

What steps would you take to try to re-establish a role for Mr. Webster in the family?

Individuals with ALS use their technology until within a few weeks of their deaths. In one study those with primary bulbar ALS used their AAC technology an average of 24.9 months, and those with spinal ALS used their AAC technology for an average of 31.1 months.⁵² This means that they will require support for AAC throughout the later stages of the disease.

It is important that clinicians provide information regarding the speech-language characteristics of ALS at the outset of intervention. There is a relationship between speaking rate and intelligibility, with 80% intelligibility occurring at about 130 wpm.³ Speech rate continually drops as ALS progresses, and this measure is used to determine the timing of AAC interventions. It is recommended that individuals with ALS be referred for AAC assessment when their speaking rate reaches 100 to 125 words per minute on the Sentence Intelligibility Test (the mean speaking rate on this test for adults without disability is 190 words per minute).⁵²

Families need to remain aware of AAC service intervention opportunities and the need for ongoing training. Flexible AAC devices and strategies that will accommodate for changes over the course of the disease are important. Acceptance of AAC by persons who have ALS is high. In one four-year study, over 96% of those given the choice of AAC accepted that choice.³ A key reason for acceptance of AAC by persons with ALS is their desire to continue interacting with communication partners in a variety of contexts. As the disease progresses it is increasingly important for the individual with ALS to have a reliable method to make their needs known. Establishing a reliable no-tech communication method, such as eye gaze or eye-blink yes or no, is important so that the individual retains some means of communication when all other motor functions are no longer available.

Dementia

Dementia is a syndrome, or pattern of clinical symptoms and signs, that can be defined by: (1) a decline of cognitive capacity with some effect on day-to-day functioning; (2) impairment in multiple areas of cognition (global); and (3) a normal level of consciousness.⁵⁸ The incidence of dementia is expected to grow. Currently 10% of people aged 65 years and older and 47% of people 85 years and older have been diagnosed with Alzheimer’s disease.⁵² This percentage translates into about 4 million people in the United States, a number that is expected to increase to 14 million by the year 2050. A major characteristic of dementia is difficulty in communicating, both receptively and expressively.

The aim of AAC intervention in dementia is to maximize communicative and memory functioning, to maintain (or increase) activities that increase participation/engagement, and maintain (or increase) quality of life for people with dementia across the disease progression.⁵² Successful AAC intervention may also increase the quality of life and decrease the stress of family and professional caregivers of individuals with dementia.

AAC interventions for dementia are designed to maintain function, compensate for lost function, and/or counsel the individual or family regarding conditions and options for managing the symptoms of dementia. There are several forms of compensatory support typically used. Low-technology communication cards and books, pictures, drawings, and printed reminders can be designed to support those with dementia to remind them of temporal or semantic information. High-technology support such as computerized memory aids for visual or auditory information is also available (see Chapter 10). AAC in dementia intervention is typically designed to support the individual, rather than to support his or her communication interactions, per se.⁵²

AAC interventions for dementia are relatively new, but there is mounting evidence of their effectiveness. Investigation of the use of AAC and cognitive support technology by persons with dementia is encouraging. Most approaches involve low-technology memory and communication books and high-technology displays that are positioned within the individual’s living space. Additional techniques include modifications of the communication partner’s behavior during communicative interactions by: