FAQ’s from the AAC Committee for IALP
SLP = Speech Language Pathologist
AAC = Augmentative and Alternative Communication
- Q1: How young should AAC be started with children who are at-risk for speech delay (Deaf and Hard of Hearing, Autism Spectrum Disorder, Down's Syndrome, Tracheotomy, Cerebral Palsy, etc.) to best support them to develop communication, and what techniques and materials should be used?
- Q2: How much do AAC devices cost and who pays for them?
- Q3: Are AAC options appropriate for a child who has been diagnosed with Childhood Apraxia of Speech?
- Q4: Are the AAC needs and solutions different for adults?
1. Q: How young should AAC be started with children who are at-risk for speech delay (Deaf and Hard of Hearing, Autism Spectrum Disorder, Down's Syndrome, Tracheotomy, Cerebral Palsy, etc.) to best support them to develop communication, and what techniques and materials should be used?
AAC should begin from birth to prepare the family and child for developing communication from the first uses of body language and differentiated cries to making their wants and needs known. Early language support is essential to insure the success of any system of communication and should be multimodal because locations, situations and technology change consistently throughout the day and the environment.
1. Body language and gestural language: Supporting the family in reading the communications systems the child is using, presenting visual communication systems to the family they can use and assisting the child in using these to the best of their ability. I.e. Gestural language is a naturally occurring language system but can become a useful and in-depth system for a nonverbal child in situations where a child cannot use a concrete system. This often can be developed from observation of the child's abilities and molding them into a system the family feels comfortable with. Some examples of these can be facial expressions, eye movements, natural gestures, sign language, and variations in voice.
2. Choices: Choices help the child maintain a modicum of control of their environment and have the things they prefer. These can begin as soon as the child can look or reach in the most simple form, bottle or pacifier, mommy or daddy, food or drink. Objects word association is built using these choices and can move to photos of the times as they child matures. Many symbols systems are available as the child matures beyond the need for objects and photos. Development should proceed through the developmental process of typical language development to build the foundation for more advanced communication in the future.
3. Simple voice output devices: Use of voice output devices should not be introduced in the advance stage but in the single word stage and used as a single word system just as language develops. Call family, ask for more, greeting, participating in activities with others. There are multiple simple, one step devices available as well as adaptations for tape recorders or computers that are available, as well as turning an iphone or ipad into a single out put device. Moving to and forward developmentally as the child's language develops appropriately. Using a system beyond the developmental level of the child will be ineffective and discourage the family.
4. Cultural and Economic considerations: As the family is introduced to these ideas their family dynamics, culture, and economic situation should be a high priority in making decisions. Each country and culture has it's own outlook and handling of different situations. We need to be sure we understand their view of infants, their needs and how they are cared for before asking more than the family is able or willing to do. We need to also use systems that are financially appropriate to the family. Keeping programming low tech may be the perfect solution for many families because it allows them to stay within their cultural and/or economic means.
A.: In Europe, costs for technical communication aids vary from country to country, even when countries use the same currency (Euro) and when the costs refer to the very same device. Similarly different are insurance policies for each country; while in some countries (e.g. in Scandinavian countries or Germany) insurance companies reimburse most types of technical communication aids, in other countries they don’t.
In Austria, the major organization for developing, lending and selling communication aids, computer programs, and special toys and switches, with offices in several federal states, is LIFE tool (www.lifetool.at). LIFE tool in cooperation with teachers, therapists and families provides counseling regarding possible communication aids dependent on the abilities of the potential user, counseling regarding ways how to finance a device, and training in using a device or computer program. The service for counseling is free; clients can also borrow a device or program for a few weeks without having to pay.
Problems typically arise when families decide to purchase a technical device: While Austrian insurance companies reimburse mobility aids to a high degree, communication aids hardly ever are reimbursed. A frequently used argument is that in Austria persons with a disability receive a monthly "nursing money": The amount of daily care a person needs decides over the level of the nursing money, ranging between 1 and 7, which theoretically should allow the person to pay for either human or technical aids in the amount he or she needs. However, there are children and adults who physically are quite able to care for themselves, but cannot produce verbal speech and would profit from a high tech communication aid. Those persons typically only receive a low level of nursing money, while the costs for a high tech communication aid (e.g., a powerful Minspeak based device) exceed 10.000 €. Consequently many families experience an odyssey through various charity organizations or funds to get coverage for at least parts of such an expensive device, resulting in long periods between the decisions for a device and actually owning and being able to use the device.
Another consequence of financial barriers is that children (more than adults) may get supplied with a low-tech device with recorded speech (typically ranging between about 100 and 1000 €, depending on the capacity), although the child might have the potential for becoming an efficient user of a high tech device with word processing, which allows creating individual messages.
High costs of a device may also be an obstacle to switch to a device of higher capacity in case the child had matured and would be ready for a more complex device.
There are schools that have a small pool of various low-tech communication aids to be used by children with complex communication needs, but these are owned by the schools and to not go with the student once he or she leaves the school.
Children with Childhood Apraxia of Speech (CAS) demonstrate severe communication difficulties that negatively impact their ability to reliably convey their needs, wants and thoughts. Since these children have difficulty with volitional or imitative production of speech sounds and sequences, they are often candidates for augmentative communication system either as a primary communication system or a secondary communication system (ASHA, 2007). Often, parents of children with CAS voice concerns as to whether the provision of AAC systems or techniques will inhibit or prevent the continued development of speech. Studies have supported those children, when provided with communication displays during speech activities, attempted to verbalize more in presence of multiple modalities. Clearly, an augmentative communication display can provide the child with a reliable means of communication until the child is able to develop his/her own speech skills to a level where they are able to support intelligible speech.
During the period of nonverbal communication, it is critical that AAC techniques and strategies be an integral part of the intervention plan to facilitate continued language development while the speech motor system matures. Further, it is crucial to preserve the motivation while these children communicate by preventing frequent communication breakdowns which were likely to occur if AAC techniques were not included. Implementing AAC devices for children with childhood apraxia of speech are not a highly researched area. With the limited research that is available, it shows many benefits to implementing an AAC device with this population. Evidence-based research (mostly case studies) in CAS suggests that positive outcomes of intervention plans occurred when AAC systems and techniques were included. Children exhibited significant improvements in their language levels when AAC techniques were applied. Thus, Augmentative and Alternative Communication (AAC) may be appropriate for children with a diagnosis of CAS.
While traditional speech therapy is in progress, children do benefit from using sign language for some period of time until they are able to generate intelligible speech. AAC in any form (either aided or unaided) should be encouraged that allows for continued language, vocabulary, literacy and educational development. With AAC, a child can participate in classroom, engage in meaningful conversations with their partners, present with minimal conversational breakdowns and repairs, and demonstrate increased confidence in social communicative situations. Also, AAC increases the likelihood that a listener who is familiar with the speaker can “catch” the meaning of an unintelligible utterance, which can help motivate the child to communicate using the AAC device. Implementing these devices can reduce the communication pressure felt by the child who has experienced a great deal of failure and anxiety in communication attempts. This allows the child to feel comfortable communicating again. AAC also provides an alternate form of sensory input that can be used as paired association method for triggering "speech motor memories."
In light of clinical service delivery, the use of AAC requires a skilled SLP to ensure that the child's needs and abilities are properly considered and met. With proper planning and implementation, AAC is extremely unlikely to interfere with the child's development of speech. If providing support to the AAC user and family, SLPs should familiarize themselves with EBP and the current literature on AAC.
- As with all groups of people who need to use AAC, adults with significant communication impairments are not a single homogenous group. Assessment must always be focused on the needs of the individual.
- The communication needs for all individuals are complex and wide-ranging. They include a need to maintain social closeness, to develop friendships, to establish and share one’s identity and to support each person in reaching life goals – educationally, socially and personally. The goals adults have may differ in important ways from the goals of younger children and youths. The barriers and supports available are also likely to differ. In many countries, support service structures and entitlements available to children differ in important ways from those available to adults. The implications of these changes vary depending on whether someone faces the challenge of a severe communication impairment for the first time as an adult, or whether someone has a someone has a lifetime experience of needing to use AAC and must deal with transitions from one set of structures and supports to coping with new systems, procedures, supports and entitlements.
AAC Barriers and solutions for adults with developmental disabilities:
- Barrier 1: Transitions. Transitions are challenging for all of us. For people moving from education-based childhood services to service-based adult services, it is important to plan the transition carefully (Bryen, Chung, & Lever, 2010). As they leave school days behind, adolescents and adults who use AAC move increasingly towards involvement in three key areas in society: post-secondary educational opportunities, the workplace and community living (McNaughton & Bryen, 2007). These changes present new and often unexpected challenges and barriers. Many adults suddenly find they can no longer access services they need when they leave the school system (e.g., Bryen et al., 2010; Hamm & Mirenda, 2006). In some countries, they face significant challenges in getting help when they encounter problems with their AAC devices (Smith & Connolly, 2008), or in maintaining their AAC systems, both high-tech and low tech. Keeping up with changing vocabulary demands can particularly difficult, sometimes leading to a real loss of functional value of AAC systems (Murphy, Marková, Collins, & Moodie, 1996).
- Solution: Make a plan! Bryen and her colleagues (2010) stress that successful transitions require planning centered on three key areas: (1) ensuring that adults who use AAC have access to the vocabulary needed to communicate in socially-valued adult roles: (2) increasing social networks so that high rates of unemployment, social isolation and depression are reduced; and (3) increasing personal safety and reducing the risk of being a victim of crime or abuse.
- Vocabulary is the bedrock of successful communication. Across the school years, SLPs or family members often assume responsibility for ensuring that AAC vocabulary is updated and maintained. This may no longer be possible or appropriate for adults who use AAC. Identifying possible future vocabulary needs and how these can be managed is essential in effective transition planning. Using individuals who rely on AAC and who have participated in socially valued adult roles as informants, as well as professionals engaged in these contexts, Bryen identified vocabulary needed for a range of adult-related contexts. These lists are available at http://disabilities.temple.edu/aacvocabulary/. Part of the plan must address who has responsibility for programming vocabulary and how that process will be managed.
- Barrier 2. Workplace preparedness. Many adolescents who use AAC continue to leave school with limited literacy or assistive technology skills, making it even more difficult to access employment. Individuals with severe and multiple disabilities are the least likely of any disability group to pursue postsecondary education to support employment (McNaughton & Bryen, 2007). Employers may have little awareness of the needs and abilities of people who use AAC.
- Solution 2: Focused up-skilling. Specialized, short programs targeting employment, literacy and assistive technology skills can be very beneficial (Bryen, Carey, & Cohen, 2004; Bryen et al., 2010; Bryen, Slesaransky, & Baker, 1995; Cohen, Bryen, & Carey, 2003). Many of the more successful programs extend over a short number of weeks but are very specific in their focus and are driven by the goals and needs of the adult participants. If these programs are embedded into functional workplaces, the benefits can be even greater, even for people with very significant disabilities (Foley & Staples, 2003)
- Solution 3: Use Technology! Many of the successful programs capitalize on technology supports that can be delivered online, rather than in person, creating a structure of 1-2 weeks of intensive support, followed by online mentoring. In the Mentor Project (Light et al., 2007), adults who used AAC received web-based instruction in a range of skills and then went on to become mentors to younger AAC users, assisting them to develop solutions to problems such as planning living arrangements and finding a job.
- Barrier 3: Shrinking social networks. Social networks are important to all of us. Strong social networks help reduce isolation, loneliness, support mental health and can open new opportunities for leisure and for employment. Many individuals who have significant physical disabilities and who use AAC have limited social networks, that shrink further when they leave the school environment. One study in Australia (Ballin & Balandin, 2007) found that difficulty in communication and limited social networks were most related to loneliness.
- Solution: Extend and consolidate social networks. It is easy to focus on the operational and language demands of using AAC, but unless there is someone to talk to, and a reason to want to talk, these skills are meaningless. It is important to explore what kinds of networks are available (for example, using the Social Networks tool (Blackstone & Hunt-Berg, 2003)). The next step is to plan strategically to support and extend these networks.
- Solution: Use Technology! Email, Internet forums and social network media offer opportunities to extend networks within few physical demands. The Augmentative Communication Online Users Group (ACOLUG http://disabilities.temple.edu/ACOLUG) is an international e-mail list for individuals who use AAC to meet, share information, form social networks and support each other.
- Solution: Recognize the time factor. Networks develop over time, as a person ‘finds their place’ within a particular context. This means that we need to stay connected to individuals who use AAC over extended periods of time, checking in and offering a point of contact.
- Solution: Build multi-modal communication systems. Low-tech solutions to communication needs are always important. Adults who have moved away from school-based services often rely far more heavily on unaided communication systems and low-tech supports than they did while they were in school. It is important that these systems are as effective as they can be. It’s easy to overlook the importance of clear eye pointing or unambiguous yes/no responses, when there are many obvious operational skills needing attention to support access to a high-tech device. However, for many contexts where adults find themselves, their preferred options are unaided and low-tech. This means we have a responsibility to ensure that we place as much priority on developing these skills and ensuring those around them are familiar with these systems as we have for the more ‘sophisticated’ operational skills that are necessary for device use.
Ballin, L., & Balandin, S. (2007). An exploration of loneliness: communication and the social networks of older people with cerebral palsy. Journal of Intellectual and Developmental Disabilities, 32(4), 315-326.
Blackstone, S., & Hunt-Berg, M. (2003). Social networks: A communication inventory for individuals with complex communication needs and their communication partners. Monterey, CA: Augmentative Communication Inc.
Bryen, D., Carey, A., & Cohen, K. (2004). Augmentative communication employment training and supports (ACETS): Some employment-related outcomes. Journal of Rehabilitation 70(1), 10-18.
Bryen, D., Chung, Y., & Lever, S. (2010). What you might not find in a typical transition plan! Some important lessons from adults who rely on Augmentative and Alternative Communication. Perspectives on Augmentative and Alternative Communication, 19(June), 5-8.
Bryen, D., Slesaransky, G., & Baker, D. (1995). Augmentative Communication and Empowerment Supports (ACES): A look at outcomes. Augmentative and Alternative Communication, 11(1), 79-88.
Cohen, K., Bryen, D., & Carey, A. (2003). Augmentative Employment Training and Supports (ACETS). Augmentative and Alternative Communication, 19, 199-206.
Foley, B. E., & Staples, A. (2003). Developing Augmentative and Alternative Communication and Literacy Interventions in a Supported Employment Setting. Topics in Language Disorders, 23(4), 325-343.
Hamm, B., & Mirenda, P. (2006). Post-school Quality of Life for individuals with developmental disabilities who use AAC. Augmentative and Alternative Communication, 22(2), 134-147.
Light, J., McNaughton, D., Krezman, C., Williams, M., Gulens, M., Galskoy, A., et al. (2007). Web-based instruction in socio-relational skills and collaborative problem solving for adults who use augmentative and alternative communication. Augmentative and Alternative Communication, 23(1), 1-15.
McNaughton, D., & Bryen, D. (2007). AAC technologies to enhance participation and access to meaningful societal roles for adolescents and adults with developmental disabilities who require AAC. Augmentative and Alternative Communication, 23(3), 217-219.
Murphy, J., Marková, I., Collins, S., & Moodie, E. (1996). AAC systems: Obstacles to effective use. European Journal of Disorders of Communication, 31, 31-44.
Smith, M., & Connolly, I. (2008). Roles of aided communication: Perspectives of adults who use AAC. Disability and Rehabilitation: Assistive Technology, 3(5), 260-273.
Submitted on behalf of the AAC Committee by Judy Montgomery, AAC Committee Chair.
Martine Smith Ireland
Gonda Pickl Austria
Permelia McCain USA
Jayanti Ray USA