Supporting Families of Children Who Use AAC

Abstract

You have accessThe ASHA LeaderFeature1 Aug 2007Supporting Families of Children Who Use AAC Judy Seligman-Wine Judy Seligman-Wine Google Scholar More articles by this author https://doi.org/10.1044/leader.FTR1.12102007.17 SectionsAbout ToolsAdd to favorites ShareFacebookTwitterLinked In We had a meeting with several other parents. One of the fathers was very skeptical and even belligerent about his daughter communicating with AAC. To my great surprise I rose to the occasion and gave a long explanation of the importance of communication and AAC. The next morning at breakfast, my son began a conversation with me using his communication chart. He asked if it was going to rain. At long last he was actually initiating communication. I couldn’t believe the coincidence. —Mother of 4-year-old boy Was this a coincidence? Clinical experience has shown that family members, including parents, siblings, and often even grandparents, are most frequently the key players in determining a successful outcome for augmentative and alternative communication (AAC) implementation with children. Implementation of an AAC program into the daily routine provides the child who is severely delayed in speech and/or language development with the strategies to communicate and interact meaningfully and effectively. Yet it cannot be taken for granted that a family can automatically implement an AAC program with a child, just because the communication professional has prescribed this approach as part of the child’s educational-therapeutic intervention program. Families require support in a multitude of areas to facilitate their children’s use of AAC strategies. The importance of early intervention in all areas of rehabilitation is continually being stressed. Children who develop normally frequently say their first words before their first birthday. With many children in need of AAC, we initiate this intervention in the form of choice-making between objects and in the use of voice output for requesting an object or saying “more” at around 1 year of age or even earlier. In this stage, however, many of the families of children in need of AAC intervention—particularly if this need is associated with a physical disability—are still struggling with the acceptance of the child’s disability. Mourning and Acceptance The need to go through the mourning stage as a prerequisite for acceptance has been discussed in the literature. Frequently we are asking families in this stage to use an unfamiliar form of communication that sets their child apart as being different, and that requires learning and effort and even additional expense—at a time when they are still struggling with acceptance. For many families, the introduction of AAC is interpreted as a final diagnosis that their child will not speak—a harsh sentence that is difficult to cope with. We must stress to parents that both clinical experience and research (Cress & Marvin, 2003; Cumley, 2001) indicate that the use of AAC does not preclude the development of speech. As SLPs, we must continue to work on the development of the child’s oral and speech skills, together with the implementation of AAC strategies. It is essential that we provide assistance and support to enable family members to accept and use the recommended AAC strategies. This encouragement can be through discussions, education, and support groups with other parents—both those who are in a similar stage and those who have already been through the process. Groups for grandparents and also for siblings are also highly valuable. We must be constantly aware of the families’ needs, concerns, and fears in order to provide meaningful and relevant support. It is often important to repeat the same information over and over; the information that family members will absorb at a given time is a function of their state of acceptance at that time. Working Through the Details Parents must be members of the AAC team, at all levels of assessment and implementation (Beukelman & Mirenda, 2005). All family members, and siblings in particular, have much to offer in terms of vocabulary selection. Families frequently come to the table with a considerable amount of knowledge about the various AAC tools available. It is our job to help sort through this information to determine the strategy most appropriate for the specific child based on age, disability, and other factors. This new role is one that we as professionals are in the process of learning. After an assessment, families receive recommendations on many issues, including the AAC strategies to be used at the outset (speech output, communication chart, computer, etc.); the most appropriate graphic system (PCS, Blissymbols, written words, etc.); the initial vocabulary to be used; the suggested method of access; and communication settings. Families learn the details of the communication program, but these details may be difficult to retain and process. This same information may perplex the family later on, and slow or stop the implementation of the program. We play a critical role in setting priorities with the family and working through these recommendations. If we don’t, the wonderfully detailed report we have painstakingly written, complete with detailed recommendations for developing the AAC intervention program, may lie neatly folded in a drawer and the child may not experience the benefits of using AAC strategies. In-home Training Once an AAC system has been prescribed and developed for a specific child, the parents and other family members are expected to communicate with the child using these tools—but neither parents nor child has a model for communicating through the use of AAC strategies. We not only ask the families to respond to the child when he or she uses the AAC system to communicate with them, we also frequently ask them to use the AAC tools when they communicate with the child, to develop the child’s receptive language and to model AAC use. But how can we expect families to model the use of these strategies when they do not have experience in this area? It becomes our role to provide “facilitator” training. We can provide this training in a clinical or educational setting, but in my experience the most effective training takes place in the home, with as many family members as possible present. In this way, we model ongoing interaction with the child. Sibling participation enhances the sessions, as these interactions are often the most natural and interactive. An added benefit is the empowerment of the child who is communicating with AAC—the child becomes the center of attention and the one controlling the situation, leading to enhanced self-image and self-confidence. Witness the following scene: R., a 12-year-old girl with multiple disabilities, has some snacks to share with her brother and sister. She has three simple voice output devices in order to say to whom she is going to give a snack—her sister, brother, or herself. She knows that to be polite, she must give to each of them before she takes one for herself. Her sister and brother each want to be selected first—they start whispering in her ear “choose me first,” “you chose him last time,” etc. R. is enjoying every minute of this, and is laughing and teasing them. What power, what control, what empowerment! What fun for the SLP! Teaching Advocacy Parents of children who communicate using AAC frequently do not know how to advocate for their children’s rights to obtain the services and equipment they need. The parents are frequently overwhelmed by the child’s disability, the demands on them as a result of the disability, and the need to approach myriad public offices and service providers to obtain the needed services. Parents may be unaware of their children’s entitlements and rights, the eligibility requirements for public funding, or the governmental sources to approach, nor do they know how to advocate for public funding to help in the purchase of AAC services and equipment. Parents often either rely on the professionals working with their children to advocate for them, or they simply surrender rather than fight for their rights. It becomes the responsibility of the professional working with the family to provide the tools that empower these families to advocate for their children. We have provided classes for parents of children who communicate with AAC (Seligman-Wine, 1998) that include presentations on developing advocacy skills and the rights of persons who communicate using AAC. The speakers included representatives from the National Insurance program; the Ministries of Health, Education, and Social Welfare; a community advocacy center; and the National Human Rights Center for People with Disabilities. The most significant outcome has been parents’ change in attitude, as they become proactive in demanding that funding for AAC services and equipment be made available for their children. There are likely additional areas in which professionals working in the field of AAC are able to provide support to families of children who are communicating using AAC. Regardless of what they may be, we must remember that the support we provide to the families is often one of the critical factors contributing to the successful outcome of AAC intervention and implementation in young children. AAC in Israel: Services Widespread for Children, Not for Adults by Judy Seligman-Wine In Israel augmentative and alternative communication (AAC) implementation is widespread for children with both physical and cognitive disabilities. Adult AAC services still require development. The Ministries of both Health and Social Welfare are just beginning to develop programs to train professional personnel to implement AAC programs in school and residential settings. However, the government does not fund either AAC services or acquisition of AAC equipment. The Ministry of Education provides training for people working in their employ at no charge. AAC services are available through special education settings. Payment is necessary, however, outside of special education or for families wishing to augment services their child receives. In most cases, a family must pay privately for an AAC assessment or consultation from a specialty clinic. One Health Fund will cover this expense on the basis of an unwritten rather than formal agreement. AAC equipment must be purchased privately, most often with the support of private funding agencies. The Ministry of Health is required to fund everything included in what is referred to as “the basket of services.” As yet, AAC services and equipment are not included in this basket, despite repeated efforts. All three communication disorders/speech-language pathology training programs offer courses in AAC. One program offers a full year, the second is a full semester, and the third offers a half-semester. For most people (children and adults) who communicate using AAC, the primary communication tool is a chart. Voice output, primarily in the form of digitized speech, is frequently used in conjunction with the communication chart. Speech-generating devices (SGDs) are rarely used as the primary communication tool in Israel—they are expensive devices that must be imported and for which there is no public funding. Replacement in the event of breakdown is problematic. In addition, many people within the community do not use technology on the Sabbath and religious holidays, thus reinforcing the use of a paper chart as a primary tool. Yet the use of computer technology for communication is growing. Hebrew voice synthesis software is now available, enabling speech output through computer usage. The Boardmaker® program, which creates printed symbol-based communication materials, is available in both Hebrew and Arabic. Several writing programs—“Writing with Symbols” and “Clicker 4”—have been translated into Hebrew. An SGD loan library, run by a service organization, lends out a wide range of SGDs and computers with communication software to children and adults from throughout the country for up to six months. However, the many access devices that enable AAC usage through technology, particularly for adults, are not available in Israel, primarily due to expense. Even if funds are available, families are hesitant to acquire these devices, because they have difficulty obtaining devices to try out before purchase. Israel is a small country, making it possible to plan AAC events on a national scale. The Israeli chapter of the International Society for Augmentative and Alternative Communication (ISAAC) is very active, holding events such as a two-day annual conference with accompanying post-conference workshops, half-day workshops throughout the year, and an annual gathering (free of charge) for persons who communicate using AAC from throughout the country. For many individuals, this annual meeting is the highlight of their social calendar. ISAAC-Israel also publishes an annual journal comprising original articles, translations of major works from other languages, and the Hebrew translation of the abstracts from the English-language AAC Journal from the previous year. ISAAC-Israel is actively working together with government agencies to develop regulations for the rights of persons who communicate with AAC. Author Notes Judy Seligman-Wine, is a speech-language pathologist and an augmentative communication consultant at the Mish’aul Center for Augmentative Communication and Assistive Technology in Jerusalem, Israel. She can be contacted at [email protected]. Advertising Disclaimer | Advertise With Us Advertising Disclaimer | Advertise With Us Additional Resources FiguresSourcesRelatedDetails Volume 12Issue 10August 2007 Get Permissions Add to your Mendeley library History Published in print: Aug 1, 2007 Metrics Current downloads: 4,259 Topicsasha-topicsleader_do_tagasha-article-typesleader-topicsCopyright & Permissions© 2007 American Speech-Language-Hearing AssociationLoading ...