Handbook of children with special health care needs


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Handbook of children with special health care needs

  1. 1. 23AbstractCommunicating confidently is the cornerstone of a positive self-image, andwe recognize that severe communication disorder is an example of a phrasethat will be interpreted differently in different contexts. Our intent in thischapter is not to diminish the impact of less debilitating communication dis-orders, but our focus will be on the small but significant minority of childrenwho have such severe difficulties that they either cannot communicate viaspeech or are at risk to have significant limitations in this area. This area ofpractice is known as augmentative and alternative communication (AAC).For children with severe communication difficulties, AAC is a powerfuloutlet for celebrating the fundamental human connection that all childrenneed to thrive. Healthcare providers are in a unique position to help identifyand support children with severe communication disorders, and this beginswith helping caregivers access AAC services for these children. Researchhas consistently shown that the use of AAC strategies does not interferewith the development of speech. Further, when the child’s caregivers useAAC strategies to support language development, the outcomes improve.AbbreviationsAAC Augmentative and Alternative CommunicationAJSLP American Journal of Speech-Language PathologyASHA American Speech-Language Hearing AssociationIDEA Individuals with Disabilities Education ActJSLHR Journal of Speech, Language, and Hearing ResearchD. Hollar (ed.), Handbook of Children with Special Health Care Needs,DOI 10.1007/978-1-4614-2335-5_2, © Springer Science+Business Media New York 20122Severe Communication DisordersCarol A. Page and Patricia D. QuattlebaumC. A. Page ()Center for Disability Resources, Department of Pediatrics,University of South Carolina School of Medicine,8301 Farrow Road, Columbia, SC 29203, USAe-mail: carolpageslp@gmail.comP. D. QuattlebaumCenter for Disability Resources, Pediatric Schoolof Psychology, 3612 Landmark Drive, Suite A,Columbia, SC 29204, USAe-mail: quattlep@yahoo.com
  2. 2. 24PL  Public LawSLP Speech-Language Pathologist2.1 IntroductionThe traditional articulation therapy may be thefirst image that comes to mind when the fieldof speech-language pathology is mentioned, andthis role is important. While misarticulation of “r”or “s” sounds might not seem to represent a seri-ous problem, this can negatively affect a child’sself-esteem and thereby limit his potential in life.Communicating confidently is a cornerstone of apositive self-image, and we recognize that severecommunication disorder is an example of a phrasethat will be interpreted differently in differentcontexts. In the field of speech-language pathol-ogy, severity ratings are based upon clinical judg-ment rather than an absolute numeric standard orseverity rating scale such as those used in rankingthe level of intellectual disability. Our intent inthis chapter is not to diminish the impact of lessdebilitating communication disorders, but ourfocus will be on the small but significant minorityof children who have such severe difficulties thatthey either cannot communicate via speech or areat risk to have significant limitations in this area.This area of practice is known as augmentativeand alternative communication (AAC).Severe communication disorders may resultfrom acquired injuries and illness or from de-velopmental conditions. Whether acquired orcongenital, the language, phonology/articulation,and voice disorders can each or in combinationlimit communication to such a degree that AACis needed. For example, a child might have suchsevere dysarthria (oral muscle weakness) result-ing from a head injury or treatment for cancerthat both articulation and voice are profoundlyimpaired. AAC may be needed for this childthroughout his or her life span. In contrast, thechild who has apraxia (oral motor planning prob-lems) associated with autism, may be unintelli-gible and require AAC for several years. Both ofthese children will have traditional articulationtherapy as a component of their intervention plan,and they must also be supported by strategies thataddress the broader picture of communication.Except in cases involving a short-term medicalintervention (as in a tracheostomy tube), the exactcourse of speech development andAAC interven-tion will be unique to the child. Some children willuseAAC for a relatively short time, and for othersAAC will be the primary mode of communicationinto adulthood. While the course is uncertain, theconsequences of inadequate communication skillintervention are more predictable. Children whoare not supported in communication developmentmay misbehave, become depressed and/or social-ly isolated (Light et al. 2003).The foundation of AAC rests upon the convic-tion that all individuals can and do communicate(National Joint Commission for the Communi-cation Needs of Persons with Severe Disabili-ties 1992). Further, successful communicationinterventions for children are the responsibil-ity of every communication partner, not just thespeech-language pathologist (SLP). The readerof this chapter will gain an understanding of:• The definition and scope of AAC• The population of children who benefits fromAAC• The difference between AAC and other learn-ing, symbol, and picture tasks• The components of successful AAC assess-ments• The components of successful AAC interven-tions2.1.1 What is AAC?The American Speech-Language-Hearing As-sociation (ASHA) has defined AAC as follows:“AAC involves attempts to study and when nec-essary compensate for, temporarily or permanent-ly, the impairments, activity limitations, and par-ticipation restrictions of individuals with severedisorders of speech-language production and/orcomprehension. These may include spoken andwritten modes of communication” (ASHA 2005).Whether through speech, behaviors, gestures,writing, etc., the human communication is auniquely complex and dynamic activity. The cru-cial link is a shared symbol system that allowsboth partners to construct messages and jointlyinterpret meaning (Fig. 2.1).C. A. Page and P. D. Quattlebaum
  3. 3. 25Typical or “normal” communicators have alarge repertoire of communication options (e.g.,facial expressions, body posture, gestures, eyegaze, vocalizations, speech, writing, comput-ers, telephones, etc). Individuals who have se-vere communication difficulties will also requirecombinations of communication modalities topromote functional and effective communicationin all environments. Therefore, best practice inAAC includes developing a multimodal commu-nication system. A child could be taught to usesigns, picture symbols and a voice output deviceto communicate in various contexts. AAC de-vices are more available now than ever before.Mainstream technology has streamlined the pro-cess of acquiring touch screen tablets and hand-held devices with AAC software or apps. This isan exciting development, but these are not foreveryone with a severe communication disorder(Gosnell et al. 2011).Sometimes family members question the needfor AAC because they feel that they know whattheir loved ones need even with minimal commu-nicative interaction. For example, children whohave supportive caregivers may be able to com-municate adequately using basic strategies such asreaching and utilizing facial expressions becausefamily members often report that they know whattheir loved ones need even with minimal commu-nicative interaction. Individuals outside the fam-ily typically have much more trouble interpretingidiosyncratic signals. When unfamiliar commu-nication partners encounter a child who cannotcommunicate using traditional symbol systems,they may not understand the message. AAC is thebridge that enables children with severe commu-nication difficulties to learn higher-level languageskills and to interact with individuals outside thefamily. AAC should be viewed as an essentialcomponent of intervention programs that providea foundation to support the learning, communica-tion, social and emotional development of chil-dren, and strengthen their relationships with fam-ily members and others in the community.2.1.2 Language DevelopmentSpoken language is the natural course of devel-opment for most children. In those who do notdevelop speech, a brain difference or disorderusually exists. Paul (2007, p. 11) summarized theresearch on brain structure and function relatedto developmental language impairments: “It isimportant to realize that no one pattern of brainarchitecture has been consistently shown in allindividuals with language impairment. Instead,these structural differences appear to act as riskfactors for language difficulty.” Conversely, achild with an acquired speech and language im-pairment will have the area of damage identifiedby various imaging tests.Communication intervention takes a some-what different form when children are not speak-ing, but the typical course of spoken languagedevelopment provides the starting point as AACplanning begins. There are a number of languagedevelopment models. Some focus more on thechild’s innate language capability. The fact thatchildren around the world follow a similar se-quence of cooing, to babbling to speech supportsthese theories. Other theories focus more on theneed for interaction with communication partnersas the springboard for language development.An appreciation of the contributions of each ofthese models has gained wide acceptance (Nelson2010). The following example (Table 2.1) showsthe parallels between spoken language develop-ment and language development that are support-ed withAAC. This comparison illustrates that justas language development evolves rapidly whentypical children are young, theAAC interventionsevolve and change as children’s needs change.2.1.3 The Impact of AAC on SpeechProductionThe use of AAC is not new to the twentyfirst cen-tury. Helen Keller was one of the first and mostFig. 2.1  Essential elements for human communication.This figure illustrates the three basic components ofhuman communicationReceiver:ReceptiveSender:ExpressiveShared Meaning2  Severe Communication Disorders
  4. 4. 26famous AAC users. She expressed herself bysigning letters of the alphabet against the palm ofher communication partner’s hand to begin herentrance as an interacting and contributing mem-ber of society. The success story of Helen Kelleris often perceived as an isolated incident. In real-ity, the world of AAC has exploded both theoreti-cally and technologically since then with most ofthe growth occurring over the past few decades.Along with most things that develop quickly,many misconceptions exist. A common miscon-ception among SLPs, parents, and even somephysicians is that giving a child an AAC systemwill lead to a disruption or impairment in natu-ral speech production. The research studies havelooked at the impact of AAC upon children ofdifferent ages and diagnoses. A meta-analysis ofthese studies by Millar et al. (2006) revealed thatAAC does not impede natural speech production.A growing body of research is continuing to pro-vide compelling evidence to share with familieswhen such concerns arise. AAC looks different,but it does not decrease the likelihood of speechproduction (Table 2.2).Another misconception is that AAC is onlyfor children who have failed to make progress inTable 2.1   Spoken language development versus supporting language development using AACLanguage LearningAttributeSpoken Language (Typical Development) AAC CorrelateTiming From birth, vocalizations are interpretedas communicationFrom birth, vocalizations are interpreted ascommunication. Whenever the child is atrisk for significant communication difficul-ties, AAC is consideredEarliest interactions Presymbolic communication is valuedand supportedPresymbolic communication is valued andsupportedExample: Parents respond to babbling asif the child is saying words. This focusedreinforcement of word-like utterancesgives rise to true wordsExample: Looking toward an object bychance is interpreted as communication.This focused reinforcement teaches thechild how to use eye gaze as communica-tion of a wordUtterance length Language evolves from single words tophrases and then sentencesSymbols are sequenced to produce phrasesand sentences. Adults model the use ofAAC strategiesScope of communicationpossibilitiesChildren cry, point, vocalize, use words,etc. to communicate. As they get older,they phone, write, type, text, and emailChildren are encouraged to use a variety ofmodalities so that they can communicate inmany contexts. (Speech, gestures, objects,writing, etc.)Social-emotionalmaturationChildren learn about emotions as theirparents teach them these words (happy,bored, etc.). They develop emotionalregulation and empathy through observa-tions of others and through conversationsChildren learn about emotions as their par-ents teach them these words (happy, bored,etc.). They develop emotional regulationand empathy through observations of othersand through conversations. Adults continueto model AAC strategiesBehavioral presentation As children learn to speak, they areexpected to use words rather than whin-ing, tantrums, etc. to communicateAs children learn to use AAC, they areexpected to use symbols/signals rather thanwhining, tantrums, etc. to communicateRate of message exchange Younger children process and producemessages more slowly and develop skillin more rapid communication exchangesover timeSpecific rate-enhancing strategies aretaught and these may be different for differ-ent situations. Residual speech is encour-aged because this is always more efficientthan AACRate of progress In young children, speech and languageskills advance rapidly in the preschoolyears and more subtle refinements evolvenaturally even into adulthoodAAC progress can be slower especiallywhen children have cognitive impairments.Systems are modeled, taught, and refinedinto adulthood to support communicationwith new partners and in new contextsC. A. Page and P. D. Quattlebaum
  5. 5. 27traditional speech-language therapy. Parents andclinicians do not need to choose between teachingspeech production and teaching AAC strategies.If deemed appropriate, traditional speech therapymay be pursued while a child uses an AAC sys-tem. In fact, AAC can stimulate verbal expres-sion for many children. AAC is best viewed as abridge to optimal communication and thereby anavenue for promoting cognitive, emotional, andsocial development.2.2 Early InterventionA child’s preschool years provide an unparal-leled opportunity to nurture all aspects of devel-opment during this critical period of rapid learn-ing. The results of a study by Binger and Light(2006) revealed that 12% of 8,742 preschoolerswho were receiving special education requiredAAC. Children who had developmental delays,autism spectrum disorders, speech-languageimpairments, and multiple disabilities were themost likely to need AAC. Clearly, significantnumbers of preschoolers around the UnitedStates will need this type of communication in-tervention.Many parents wonder about the old advice thattoddlers will grow out of speech and languagedelays. In fact, there are anecdotal reports of indi-viduals who did not begin talking until they werethree years old or older, and then matured intoadults with typical speech. Children who seemto have specific language impairment and thenrespond quickly to intervention are the very oneswho lend credibility to the notion that speechwill eventually develop. Yet even when speechdevelops, many late talkers will continue to havesubtle language problems (Rescorla 2009). Thebiggest concern is that it is not possible to pre-dict with absolute certainty which young childrenwill talk and which will not. This is true both forchildren who seem typical except for the absenceof speech and those who have other developmen-tal issues such as autism.A brief period of watchful waiting would beappropriate when the child is developing normallyin all other areas. When there are other develop-mental concerns or the communication delay ap-pears to be severe, the risks of limiting acceptablecommunication options to only natural speech aresignificant and could impact the child’s develop-ment in many areas. For example, children whocannot communicate in other ways may tantrum,become withdrawn, fail to establish friendships,and become academic underachievers when theyenter school. Children who speak increasinglyuse words as they mature and children who needAAC may use vocalizations, gestures, and sym-bols for regulating behavior and to support social-emotional maturation (Table  2.1). The urgencyof optimizing the child’s learning potential andsocial/emotional development requires explora-tion of AAC options whenever (a) communica-tion delays are evident or (b) the child’s historysuggests that he may be at risk for severe speech-language impairment. Caregivers need to under-stand that the choice is NOT between speech andAAC. Rather the choice is whether to work onlyon speech without knowing how quickly (or evenif) this will be a viable expressive option for thechild who is at risk of severe communicationTable 2.2   The impact of AAC interventions on language acquisitionStudy Participants OutcomeThe impact of augmentative and alter-native communication on the speechproduction of individuals with develop-mental disabilities: A research review(Millar et al. 2006; JSLHR)Meta-analysis of six stud-ies involving 27 individu-als, most of whom hadintellectual disabilitiesand/or autismNone of the subjects had decreased speechproduction, 11% showed no change and89% showed increased speech productionEffects of augmentative and alternativecommunication intervention on speechproduction in children with autism: Asystematic review (Schlosser and Wendt2008; AJSLP)Nine single-subjectdesigns and two groupstudies with 98 totalparticipantsAAC interventions did not impede speechproduction. Subjects made modest gains inspeech2  Severe Communication Disorders
  6. 6. 28difficulties or to support language developmentusing every means possible.Table 2.1 outlines the difference between spo-ken language development and language devel-opment in children who use AAC. The primarydifference is that in children at risk for severecommunication difficulties, there is a greatertherapeutic focus on reinforcing all vocaliza-tions, watching for subtle signals such as smallgestures, modeling the use of AAC systems, andproviding many opportunities to practice multi-ple communication modalities such as signs andpicture symbols. The child will progress fromsingle symbols to combinations and will movefrom a less developed communication system(e.g., crying) to a more symbolic level. The rateof progress varies for both spoken language de-velopment and language development of an AACuser; however, progress may be slower for thosewith cognitive impairments.Given that predictions about speech develop-ment are not completely reliable, the most help-ful approach healthcare providers can take whendiscussing a child’s communication difficulties isto guide parents toward an appreciation that in-tervention programs that combine augmentativecommunication strategies along with a focus onimproved articulation will be the most success-ful. The child who does begin to talk has not lostanything, and the child with persistent, severespeech production problems has the tremendousadvantage of being able to interact with others toaccess the knowledge that will promote greateracademic and social success.2.3 Diagnoses Associated withSevere CommunicationDisorders2.3.1 MedicalA number of medical conditions have comor-bid severe communication disorders and maylead SLPs toward consideration of an augmen-tative communication system. While some chil-dren have a single risk factor, others will havemultiple risk factors that can combine to have amore profound impact on speech production. Anexample is a child who has an intellectual dis-ability, hypotonia, and a behavioral presentationthat affects learning. This youngster is at greaterrisk for lasting communication difficulties thanthe child who has a single risk factor. However,a single risk factor can have a devastating effectsuch as with the child in our practice who con-tracted meningitis in infancy. When he was sixyears old, he had average scores on nonverbalcognitive measures. This child had received sev-eral years of speech-language intervention andwas able to produce just one speech sound: “uh.”A shift in his therapy goals to include a focus onAAC was urgently needed.In contrast to children such as the one withmeningitis who had a definitive medical diagno-sis, there are other children with severe speechimpairments who present with a normal neuro-developmental course and without a specificmedical etiology to explain the communicationdisorder. Both groups of children needed highquality, evidence-based interventions includingimplementation of AAC strategies.2.3.2 Medical NecessityThe potential outcome is the same for childrenwith a medical diagnosis that explains theirdisability and those without a medical diagno-sis: they are not able to participate optimally intheir medical care or in any other aspect of thedaily routine if they are not able to convey theirthoughts, ask questions and answer questions.When speech is defined as the ability to commu-nicate with others, it is clear that individuals whoare unable to communicate adequately improveor regain the ability to “speak” when appropriateaugmentative communication interventions arein place. This is true both when the etiology ofthe speech problem is evident and when it is not.2.3.3 BehaviorFrom an early age, children use behavior tocommunicate. The infant who cries when he isC. A. Page and P. D. Quattlebaum
  7. 7. 29hungry gets reinforced for this behavior: parentsprovide sustenance. As children get a little older,parents learn to differentiate their cries and morereliably predict whether the child needs a bottle,a diaper change, or to be held. The expectationfor typically developing children is that they willadvance from crying to more sophisticated com-munication strategies. They will learn to reachfor objects or vocalize to get their needs met.When their efforts to vocalize receive a lot of at-tention, they begin to practice this more and thenbegin to produce word approximations.Children who are not able to progress fromcrying to words may persist in crying and addother undesirable behaviors to get what they want.For example, the child who screams and hits maylearn that this behavior is a way of asking to be re-moved from situations he does not like. Researchhas documented that communication disordersand behavior disorders coexist between 33 and67% of the time (Gidan 1991; Prizant et al. 1990).While the cause-effect relationship is not wellestablished, the treatment for behavior disordersmust incorporate communication intervention asa component of a broader intervention plan thatmay also include counseling, behavior modifica-tion techniques, and medication management. Autism and IntellectualDisabilitiesThe behavioral difficulties that can be associatedwith autism and intellectual disabilities deservespecial consideration. Both of these diagnoses en-compass a broad spectrum of developmental is-sues which may or may not include limited speechproduction. Children with milder forms of thesedisabilities may have excellent speech intelligibil-ity and functional language skills. However, thereare many who will have significant articulationand language impairments. When limited speechcapability coexists with a tendency to be easilyupset, the result can be severe behavioral prob-lems that are difficult to treat. Children may resortto aggression, tantrums, self-stimulatory behavior,or excessive whining when they do not have othermethods for getting what they want (Mirenda2005). These behaviors are not unique to childrenwith autism and intellectual disabilities, but whenchildren have multiple diagnoses it can be moredifficult to determine what triggers the maladap-tive behavior and equally challenging to plan suc-cessful interventions. The research on interven-tions for children who have autism spectrum dis-orders, intellectual disabilities, or both shows thatusing AAC to support language development andsocial communication in these children has thepotential to have a positive effect on both behaviorand communication (Romski and Sevcik 2003).2.3.4 Identification and AssessmentA child’s ability to succeed in the classroom,to develop friendships, and ultimately to obtainmeaningful employment is directly linked tocommunication skills. For children with severecommunication disorders, reaching these goalsbegins with a thorough communication skills as-sessment. This process can be set in motion bythe primary healthcare provider who monitorshealth and development and guides families to-ward resources and services in the community.2.3.5 Healthcare Providers’Roles andResponsibilitiesChildren who have health issues that impact de-velopment often have accompanying speech andlanguage disorders. Physicians and other pediat-ric healthcare providers play a significant role inmonitoring a child’s speech and language skillsand making recommendations for screenings and,if indicated, full communication assessments.Knowledge of developmental norms andguidelines for making referrals to SLPs is vital.Language development begins within the firstfew months of life. A newborn baby is exposedto the rhythm or prosody of the speech of othersand begins to orient to sounds and then voices inthe environment. As early as four to six months,the children attempt to babble, an important pre-cursor to speech. Children speak their first wordsaround 10–12 months of age and begin put-ting novel two-word phrases together at 18–24months. Even young infants who are not bab-2  Severe Communication Disorders
  8. 8. 30bling when expected and show little interest insocial interaction may need speech and languageservices. Those who have more severe delays arepotential candidates for AAC.National and some state programs such asBabyNet, which serves newborns and childrenup to three years old, may provide speech-lan-guage therapy services at no charge. Child Findis the federally mandated public school programthat focuses on identifying children three- to six-year old with disabilities. Public schools providespeech and language therapy services for chil-dren who qualify in first grade up to the age of 21(IDEA P.L. 108–446 2004). Private speech–lan-guage therapy services are also available in manycommunities.Healthcare providers need to be aware of SLPsin their area who are trained to use AAC inter-vention and strategies to support communicationdevelopment. In addition, it is helpful to prepareparents for the array of interventions, includingAAC, which the SLP may suggest. This focusesthe caregivers on the idea of supporting commu-nication development rather than focusing solelyon speech production. Further, this alerts the SLPthat the expectations for this child include thepossibility of AAC interventions so that this isexplored early in the relationship with the family.Physicians are sometimes asked to play aunique role when children need AAC to supportthe idea of communication as interaction: thirdparty payers sometimes require a prescriptionfrom the child’s primary care provider whenpurchase of a voice output device is being con-sidered. The cost of these devices ranges fromUS$ 100 to as much as US$ 16,000. Therefore,the physician who is writing the prescriptionneeds to have confidence that the SLP who isrecommending the voice output device has madean appropriate selection that will meet the child’sneeds for several years.2.3.6 SLPs’Assessment Roles andResponsibilitiesWhen a communication disorder is either sus-pected or present, a referral to an SLP is indicat-ed. While SLPs are not the only source of com-munication stimulation for a child, these profes-sionals have the training to help support both thechild and those who interact with the child. Thissupport targets not just how the child sounds andwhat words he says but also how well he uses hisknowledge in the everyday routine.Communication assessment of children whohave some speech: Many children who haveAAC needs will have at least some residualspeech that can and must be nurtured. These chil-dren may be able to participate in aspects of a testprotocol that includes standardized testing. Thetesting will encompass the following areas: LanguageLanguage assessments typically include com-ponents that measure five areas: morphology(grammar), phonology (speech sounds), syntax(word order/sentence length), semantics (vocab-ulary/meaning), and pragmatics (social languageuse). Children with autism spectrum disorders(ASD) have the most difficulty with the commu-nication-social component of language (Mirendaand Iacono 2009). Children with very severecommunication impairments may have difficultyin all of these areas of language.Pragmatics deserves special attention becausethe ultimate goal is for children to become in-dependent, socially appropriate, and appealingcommunicators. This area is the interface ofspeech and language skills with daily routinesand familiar and unfamiliar communication part-ners. Pragmatics is a key consideration in thedevelopment of AAC systems that are effectiveand contribute to improved quality of life. Eventhough there are standardized tests for pragmaticskills, these are not normed for children withsevere communication disorders. Therefore theSLP will assess pragmatic language through in-formal observations and caregiver interviews. ArticulationThis is often the most obvious area of communi-cation impairment. Standardized testing includesadministration of tests designed to elicit produc-tion of all the speech sounds of English. Childrenwho have a very limited speech sound repertoireC. A. Page and P. D. Quattlebaum
  9. 9. 31may be asked to imitate very simple words orsingle consonant or vowel sounds. An interestingphenomenon that has a profound effect on speechintelligibility is the inconsistency that is evidentwith apraxia of speech which is a disorder ofmotor speech programming. Children with thisdisorder often cannot imitate the sounds that theyproduce regularly in their spontaneous speech at-tempts. Those who have motor weakness ( dysar-thria) will consistently have difficulty producingsounds clearly. Children may also have a reso-nance disorder ( hyponasality or hypernasality).Oral structure and function impairments may re-sult in constant or profuse drooling, which maybe remediated with positioning techniques, lip-strengthening exercises, heightening increasedattention to maintaining a closed-mouth posture,or prescription drugs such as Robinul. Severeoral structural impairments can drastically affectarticulation skills and may need to be addressedwith surgery. Like many other aspects of com-munication, children may have combinations ofdevelopmental speech sound errors and apraxia,dysarthria, and/or oral structural impairments. FluencyA fluency disorder is characterized by devia-tions in continuity, smoothness, rhythm, and/oreffort with which phonologic, lexical, morpho-logic, and/or syntactic language units are spo-ken (ASHA 1999). When children with Downsyndrome, Fragile X, Moya Moya disease, andtraumatic brain injury have severe communica-tion disorders, stuttering may be a concomitantfeature (Van Borsel et al. 2006; Van Borsel andVanryckeghem 2000). VoiceVoice disorders involve complications in one ormore aspects of vocal quality (hoarseness, stri-dency, breathiness), pitch (frequency), loudness,and/or duration (length of time speaking on a sin-gle breath), given an individual’s age and/or gen-der (ASHA 1993). Generalized neuromuscularimpairments can have an impact on breath sup-port for residual speech in children with severecommunication disorders. Maximizing posturalintegrity through improved seating systems mayincrease breath support for longer utterances.Amplification of residual speech in children whospeak softly may decrease breathiness that arisesfrom the child’s efforts to “shout” to be heard. Vision and HearingDetermining if there are sensory deficits thatcould impact the use of an AAC system is essen-tial. Referrals for vision and hearing assessmentmay be suggested before determining the bestAAC device for the child. Motor SkillsOptimal positioning is paramount to gesture andsign language or accessing a communication de-vice and an SLP may refer the child for a seatingand positioning assessment prior to beginningAAC device trials to ensure a child’s optimal ac-cess to an AAC device.2.4 AAC AssessmentIn contrast to the relative objectivity of standard-ized testing, AAC assessment has many moreinformal, subjective components. A number ofresources have excellent information on planningand conducting this type of assessment (Beukel-man and Mirenda 2005; Hegde and Pomaville2008). Unlike standardized testing which may becompleted more quickly, a comprehensive AACassessment may not be completed within the firstappointment.Assessingthecommunicationskillsofchildrenwho have limited language is frequently a chal-lenge. These children use little or no speech, andthey are often described as prelinguistic. Someof them may show little interest in playful inter-actions and others may have physical disabilitiesor sensory deficits that have limited their accessto the world around them. With children who arefunctioning at this level, the merits of standard-ized testing are debatable when all the test itemsare too hard for the child. Obviously, there areagencies that require test scores even when stan-dardized testing seems counterproductive.Another concern about standardized testingwith children who are prelinguistic is that we are2  Severe Communication Disorders
  10. 10. 32often left knowing more about what they cannotdo than what they can do. Without some idea ofwhat the child is communicating in less conven-tional ways, we do not have an appropriate start-ing point for intervention. Further, the energyexpended in charting the absence of skills rein-forces the sadness and pessimism that caregiv-ers may already be feeling. Every skill the childdemonstrates is a valuable skill, and beginningwith a functional assessment of all the ways achild communicates is the most effective wayto help caregivers fully appreciate their child’spotential. Donnellan (1984, p.  141) introducedthe “Criterion of the Least Dangerous Assump-tion,” which suggests that it is best to assume allindividuals have something to communicate, buthave severe difficulty doing so. To err on the sideof assuming competence is to set the stage forcreating positive outcomes. Notice the differencebetween focusing on what a child cannot do andwhat a child can do:• “The child is nonverbal, only answers limitedyes/no questions with head movement, andcannot access (point to) pictures of objectsindicating wants and needs,” compared to,• “The child can nod/shake his head yes/no toconcrete questions about objects to meet wantsand needs, uses eye gaze for direct selectionof a photo indicating a want/need from a fieldof eight photos positioned approximately 18inches away from him.”2.4.1 HistoryCollaboration with teachers, occupational thera-pists, physical therapists, teachers of the visu-ally impaired, and input from the parents andthe child with the communication disorder arecritical for the decision-making process (Angelo2000; Parette et al. 2001; Kintsch and DePaula2002; Beukelman and Mirenda 2005). Reports ofwhat has been tried in the past and insights re-garding what strategies and equipment did or didnot meet the communication needs are valuable.As with any speech–language assessment, the re-sults of medical, educational, vision, and hearingassessments will be important elements of the as-sessment plan for these children.2.4.2 Ecological InventoryWhen a standardized test must be administeredto satisfy an agency’s eligibility requirements,the SLP can still support the development ofappropriate goals by supplementing the test re-sults with what is variously called an ecologi-cal inventory, a routine-based assessment ora functional assessment. Using an ecologicalinventory for obtaining subjective, pragmaticinformation can provide far more informationthan structured standardized tests for childrenwith severe communication disabilities. The in-terview component of an ecological inventoryoften infuses caregivers and interventionistswith greater optimism about the child’s poten-tial and that alone is reason enough to focuson this to obtain baseline data for interventionplanning.A typical ecological inventory (Nalty andQuattlebaum 1998) will include the followingquestions:• How does the individual communicate now(gestures, signs, eye gaze, vocalizations, lim-ited verbalizations, object symbols, picturesymbols)?• What are the child’s favorite activities, objects,places, people, and foods?• When does the child try to interact with othersthe most?• Where does the child communicate now?• What environmental barriers exist? Does onecommunication device or system work betterin one environment than another?• Does the child fatigue quickly? Under whatconditions, if any, can the fatigue be mini-mized?• Who does the child interact with (e.g., friends,siblings, teachers, medical personnel, etc.)?• What communication partner barriers exist? Isone communication partner reluctant to a newway of communicating or to learn new tech-nology? Will one partner need more trainingthan another?C. A. Page and P. D. Quattlebaum
  11. 11. 33• How does the child learn best? Is the child avisual or auditory learner?• What aspects of the child’s current communi-cation system work well?The basic goals of an in-depth interview aboutthe daily routine are to determine what the childis doing to participate in routines and what thechild likes to do (Table 2.3). This ecological in-ventory of the morning routine showed that Jar-rod uses eye contact and smiling to interact withfamily members. He can point to show that heknows where his favorite foods are kept, and hemakes selections by pushing away objects/foodsthat he does not want. The interview also re-vealed that there are some additional opportuni-ties for increasing Jarrod’s communication skills.For example, pauses could be used to encouragehim to signal that he knows what is coming nextin a routine, and he could be taught to do morechoice making when objects are presented tohim.An analysis of Jarrod’s interactions revealednumerous deliberate attempts to communicate.Some children will not show as much evidence ofinterest in communicating. Ideas for interventionsfor children who are not yet showing much inten-tional communication are available in the bookby Korsten et al. (2007). The authors outline strat-egies for objectively identifying a child’s sensorypreferences and then using these preferences todevelop higher-level communication skills.2.4.3 Feature MatchingFeature matching describes the process of deter-mining what communication system would bebest to explore. The major aspects to considerwhen beginning a feature match are the child’scurrent level of skills, daily needs, current com-munication system, and future communicationneeds. It eliminates the chance of selecting adevice based on its popularity or an ambiguousdetermination of being “the best one.” The web-site created by AbleData (http://www.abledata.com/abledata.cfm?pageid = 19337) lists manyassistive technology products including AACproducts and their features. The best communica-tion device or system will always be the one thathas the features that meet the needs arising fromthe child’s disabilities. Determining the optimalfeature matches begins with looking at the indi-vidual assessment objectives and their associatedfeatures. The child’s assessment team uses selec-tion criteria to match the features to the child’sneeds based on their abilities (Table 2.4).Table 2.3   Example of an ecological inventory for a morning routineDaily RoutineMs. Smith was interviewed about the typical daily routine to better learn about the types of communication symbolsJarrod is using at home. She described a typical school morning as follows:7:00 a.m. Ms. Smith walks into Jarrod’s room to wake him up. He will sit up and look around briefly. Then hewill look at his mother, make eye contact and smile. Ms. Smith helps him get off of his bed. Then hetakes her hand to lead her to the bathroom. Ms. Smith puts him on the toilet. Jarrod wears pull-ups. Hedoes not indicate that he wants a clean pull-up. He takes his pull-up off later in the day, but he does notusually do this first thing in the morning. Ms. Smith washes Jarrod’s face and brushes his teeth. Jarrodcan provide some assistance with this7:15 a.m. Ms. Smith gets Jarrod dressed. His father selects his clothes for him. Jarrod can assist with parts of thedressing routine7:20 a.m. Jarrod goes downstairs on his own accord. He will get a banana or some grapes for himself. WhenMs. Smith comes into the room, she will offer him something to eat. If he does not want what she hasoffered, he will begin pointing to things. He will push items away until he gets what he wants. If Jarrodwants more, he repeats the same routine of pointing toward the cabinet that has what he wants. Jarrodwalks away when he is finished7:40 a.m. When Jarrod sees everyone going to the door, he gets his jacket and goes to the door. After they arriveat school, he will occasionally wave goodbyeJarrod’s parents provided the following list of activities and objects he likes: bathing/water play, swinging, slidingon the slide, walking around holding objects, fruit, chicken nuggets, and running2  Severe Communication Disorders
  12. 12. 34A final major consideration for a featurematch is the child’s future communication needs.While meeting the child’s present communica-tion needs is paramount, addressing the commu-nication needs of the future plays a critical rolein determining intervention goals and objectivesand in selecting communication devices. Forexample, a child with a degenerative conditionmay need to practice eye gaze access to a dy-namic display communication device if otherforms of access are expected to deteriorate.2.5 AAC DevicesAlthough there is great diversity within specificdiagnoses, a specific diagnosis does not indi-cate the need for a specific device. Device tri-Table 2.4   Feature matchingObjective Feature Selection CriteriaShared symbolsystemUnaided: Signs and gestures Choose one or more types of symbols that areconsistent with the child’s cognitive and literacycapabilities to nurture multimodal communicationAided: Objects, photographs, graphics,and/or textDevelopment of alanguage systemSingle-meaning pictures: One symbol hasone meaning representing one word or anentire thoughtChoose one or more language system(s) that areconsistent with the child’s cognitive and literacycapabilitiesSemantic compaction: Symbols combinedto generate vocabularySpelling: Letters combined to createwordsConstruction ofmessages to interactwith othersVocabulary: Core vocabulary of common,frequently used words combined withpersonal vocabularyChoose meaningful vocabulary to motivate thechild to communicate. A resource ishttp://aac.unl.edu/vocabulary.htmlAccess to commu-nication symbolsDirect selection:Message activated by pushing against thedevice surface or using eye gazeChoose selection method that child can reliablyuse to efficiently access communication symbolsKeyguard to prevent accidental activationof letter and picture symbolsAbbreviation expansion, word prediction, andphrase prediction can minimize fatigueIndirect selection/switch scanning:Step, linear, row/column, block Choose one- or two-switch scanning method thatmaximizes the child’s reliable movements and isconsistent with the child’s cognitive capabilitiesMinimizing visual impairments:High contrast settings Choose background and foreground color, textand symbol size that allow the child to see anddiscriminate between symbolsZoom and magnifying optionsLarge display communication devicesAuditory scanning Choose auditory options so child can choose com-munication symbols based on using hearingMinimizing hearing impairments:Amplification Choose amplification level so the child can hearthe voice outputVisual activation cues Choose visual activation cues so the child can seewhat communication messages are selectedAccess to commu-nication deviceCarrying case/shoulder strap: For childrenwho are ambulatoryChoose a carrying system that allows the child toindependently carry the communication devicewhile ambulatingMounting systems: Fasten device to astand or to a wheelchair or bed for chil-dren who are non-ambulatoryChoose a mounting system that provides accessto the communication device while the child isseated or lying in bedC. A. Page and P. D. Quattlebaum
  13. 13. 35als are an integral part of the feature matchingprocess. Determining the best communicationsystem includes a trial period for the child to usethe device during daily routines and collectingdata to support the recommendation for a spe-cific device. Communication devices can be bor-rowed from most vendors or from State Tech Actprograms (http://www.resna.org/content/index.php?pid = 132). Many of these programs offerfree AAC device loans and have a device dem-onstration center. AAC device vendors can oftenmake arrangements such as rent-to-own, rent, ora free loan to an AAC professional. In addition,most vendors will assist the SLP through pro-gramming demonstrations or providing informa-tion about training webinars or teleconferences.Communication equipment is often referred toby its level of technology using three primary cat-egories: low, mid, and high. The words “low,” or“mid” may appear to indicate that these commu-nication devices lack effectiveness, are easy forall AAC users to learn or require less knowledgeon the part of the team working with the child,but this is not the case. Again, the most appro-priate device is the one that has the features thechild needs. As progress is made, documentingthe AAC user’s skill with low- or mid-tech devic-es supports funding requests for more advancedsystems. Regardless of the level of technology,it is important that communication devices arerecommended based on the results of a thoroughassessment and feature match.“Low-tech” includes communication boardsand booklets. Low-tech devices are relatively in-expensive to purchase, or can be quick and easy toconstruct and are typically easy to modify. Manyconsider it prudent to introduce low-tech commu-nication devices during the assessment process tokickstart the intervention process, obtain usefulinformation about issues related to feature match-ing and as a backup for mid- to high-tech devices.“Mid-tech” communication devices requirebattery power for operation, cost more than low-tech devices and require communication partnersto have at least a cursory knowledge of how toprogram, operate, and maintain the communica-tion device. Human voices are digitally recordedon mid-tech devices.“High-tech” communication devices typicallyprovide a larger vocabulary than low- and mid-tech devices. Many high-tech devices includedigitized and/or computer-generated synthesizedspeech. The training required and the program-ming and maintenance of the devices can bemore involved than low- and mid-tech devices.However, when feature matching shows a needfor a high-tech communication device, the im-pact of these devices in meeting the communica-tion needs of severely multiply-disabled childrencannot be overemphasized.Readily available mainstream handheld de-vices with Apple, Android, or Windows operat-ing systems are increasing in popularity and haveAAC software or apps. However the software orapps may not be robust enough to meet all thechild’s communication needs. Vendor supportand training, device warranties and device dura-bility must be taken into consideration. As withall AAC devices, trial use and careful documen-tation of effectiveness continues to be importantcomponents of an AAC assessment.2.6 Standardized Tests, Observation,and Reports from SignificantOthersStandard scores, percentile ranks, and age equiv-alents are valuable objective data to be reportedin a summary. Descriptive data from standard-ized tests are reported if the child is very youngor severely delayed in the area of expressive orreceptive communication skills.The importance of subjective information can-not be overstated for children with severe com-munication disabilities. Informal observationsare made before, during, and after the standard-ized testing process. These descriptions shouldinclude comments about the child’s response tonew people and objects in their environment,to structured versus nonstructured tasks, and tomotivating and nonmotivating items or activi-ties. Spontaneous communication in the form ofgestures, facial expressions, body posture, andvocalizations should be documented. Parents,school staff, and significant others can be given2  Severe Communication Disorders
  14. 14. 36questionnaires to fill out prior to the assessment.These questionnaires will include space for thechild’s medical history, descriptions of the child’scurrent communication and participation in thedaily routine, information about motor skills andreports of behavioral issues that may exist. Thefeedback from the questionnaires provides greatinsight regarding the child’s communicationskills during a typical week. Parents and otherteam members will be interviewed further on theday the child is assessed.2.6.1 Summary of FindingsThe summary of all the information gatheredthrough formal and informal testing is compiledinto a report. This report provides the physician,parents, therapists, school staff, early interven-tionists, and others with detailed informationabout the child’s communication skills, com-munication goals and objectives, strategies thatfacilitate communication and any recommendedAAC devices. Sometimes ongoing therapeutictrials of AAC strategies and equipment are rec-ommended.2.6.2 Prognosis for SuccessSuccessful outcomes in AAC are specific to eachuser, and the traditional language developmentparadigm is not always the best model for mea-suring success. For some children, success mightmean increased participation in an activity or ininteractions with familiar partners. The prog-nosis for success is based on many factors, andthe child’s health status, motivation and supportfrom others are the foundations for this determi-nation. Strengths in all three areas are not alwaysneeded for successful outcomes, but a pattern ofstrengths leads to more reliable predictions aboutfuture outcomes. Extrinsic IndicatorsChildren with severe communication disordersneed considerable support from family, schoolstaff, and therapists to learn new communica-tion skills. Using a team approach to interventionmaximizes the benefits to the child, and teammembers learn from each other. The parents playa powerful role in the team. All the other teammembers must remember that parents have de-veloped the interaction style they use with theirchild in response to the child’s communicationefforts, and the parent–child interaction stylemay have been profoundly affected by the child’shealth issues. It is not uncommon for familymembers and other communication partners toreduce the communication demands on a childwith severe or multiple disabilities as they focuson the complex process of meeting the child’sbasic needs. The communication partners mayhave developed a pattern of speaking for thechild and making decisions for him. The parents’ability to shift their focus as the child’s health sta-bilizes so that they can incorporate therapy ob-jectives during everyday routines is an indicatorfor a positive outcome. Likewise, when teachers,early interventionists, shadows, or aides thinkcreatively about how best to facilitate the child’scommunication skills throughout the school day,the prognosis is more positive. If it is possiblefor the child’s SLP to cotreat with other teammembers, this has the benefits of modeling com-munication–stimulation techniques for the otherinterventionists while reducing any confusion thechild may experience when seeing multiple ther-apists in separate appointments. This empowersall adults who interact regularly with the child tomodel language using the AAC system. Intrinsic IndicatorsWhen a child realizes the power of communica-tion and is motivated to be an active participantin learning language and engage with communi-cation partners, the prognosis for improvement isgood. Some children experience the frustrationof attempting to communicate through limitedvocalizations, unnoticed or misunderstood ges-tures or body postures or misinterpreted attemptsto localize with eyes or head position. This canlead to learned helplessness and being a passiveobserver rather than active participant. Some ofthese children focus on pleasing others ratherthan actively learning a symbol system or how toC. A. Page and P. D. Quattlebaum
  15. 15. 37use language to meet some of their needs. Unlessthe child can be engaged regularly and experi-ence the power of being an active participant inthe communication exchange, the prognosis re-mains guarded.2.6.3 Stable Versus ProgressiveMedical ConditionThe child’s diagnosis of a stable medical condi-tion plus positive extrinsic and intrinsic indica-tors suggests a successful outcome in improvingcommunication skills. However, children whohave medical diagnoses that will lead to devel-opmental regression also need AAC interven-tions. In these circumstances, the child’s abilityto learn or maintain communication skills may beimpacted by increased fatigue, impaired access tothe communication device and pain or sicknessassociated with a declining medical condition.A multimodality communication system can beimplemented to prepare the children for a modeof communication they will need to rely on moreheavily in the future. For example, a child may bea proficient communicator with eye gaze, facialexpressions, gestures, signs and a communicationdevice today, but it is anticipated that eye gaze,facial expressions, and a communication devicewill be the best modes of communication as thedisease process progresses. The SLP will monitorthe child’s changing needs and make changes tohis communication system to increase the likeli-hood of ongoing communication success duringthe disease progression.2.7 AAC InterventionIntervention for AAC use is the next critical stepafter the assessment. This is the culmination ofthe information collected during the assessmentput into practical application. Intervention beginswith writing functional communication goals.AAC intervention must be based on evidencethat has been established by research and clinicaland educational practice (ASHA 2005). Althoughbasic therapeutic concepts have been describedin the literature, the features of each communi-cation system remain specific to the individualuser. Communication goals should be culturallyand linguistically appropriate and should includea strong commitment from family members. Re-search shows that when the users of electroniccommunication devices have the opportunity topractice frequently with caregivers who showthat they value this type of communication, theintervention is much more successful (Dada andAlant 2009; Romski and Sevcik 2003). Modelingthe use of the AAC system is known as AidedLanguage Stimulation or Augmented InputStrategies.In some respects, AAC interventions for se-vere communication disorders mirror medicalmodels of intervention for chronic medical con-ditions such as diabetes, high blood pressure, andsickle cell anemia. The patients with these con-ditions and their health care providers share thegoal of optimal management of the symptoms.Plans for treatment are made with the under-standing that while the disease cannot be cured,appropriate treatment can (a) help patients livethe most normal lives possible and (b) decreasecomplications and costs in the future. Interven-tion for severe communication disorders can beviewed within a similar framework. SLPs care-fully evaluate the communication abilities andpotential of each child, consider the child’s sup-port network and prescribe appropriate interven-tions. Following this, SLPs work with the childand all of the child’s caregivers to maximize thechild’s success with the AAC interventions thatare suggested.As the intervention begins, it is crucial to helpthe team distinguish between AAC and otherlearning, symbol, and picture tasks. As parents,teachers, and other interventionists work withchildren who have severe speech impairments,they ask these children to do what all childrenare expected to do: demonstrate what they knowso that adults can measure their knowledge. Thechild’s responses can take many forms dependingupon any motor difficulties or cognitive delaysthat may be present. Some children will look atthe object as it is named to signal that they recog-nize it. Others may be asked to point to pictures2  Severe Communication Disorders
  16. 16. 38or to use an adapted keyboard to type the answerto a question.The difference between AAC and other typesof learning activities must be clarified from theoutset because this confusion can create signifi-cant problems for both the AAC user and thosewho interact with him. A common misconceptionis that any activity done with “pictures” is thesame thing as AAC. In fact, pictures are used formany different purposes in the classroom and athome to meet cognitive/academic goals such as:• Learning family members’ names• Learning new vocabulary• Reading comprehension• Matching• Sorting• Understanding the daily schedule• Learning the written form of the child’s namefrom seeing this matched with the photoThe key difference in AAC is that accessingthe pictures is NOT the goal; real, meaningful in-teraction in a natural, spontaneous conversationalcontext is the goal. An analogy is that a car is atool that takes you to the beach, but the car is notthe same thing as the vacation. In the same way,AAC is a tool that takes you into social interac-tions. The focus is on using pictures to engageanother human being rather than on using pic-tures to demonstrate knowledge.In our experience, this confusion betweenhow picture symbols are used in AAC and howpictures can facilitate other types of learning isquite persistent. For example, picture identifi-cation is a skill that children are taught from ayoung age. Parents want their children to recog-nize pictures of family members and to identifypictures in storybooks. Increased adeptness inthis skill is associated with increases in cognitiveskills, and so picture identification is a way thatparents can celebrate their children’s achieve-ments. When families are asked to use pictures tonurture communication, they often need a lot ofsupport and training as they shift from a focus oneliciting responses in a teaching format to usingobjects, pictures, etc. to nurture improved socialcommunication skills.Using pictures and other symbols to com-municate is a skill that has to be taught, and wesuspect that it is the teaching component of AACthat so quickly gets interventionists off track. Thenatural tendency is to go back to using picturesto demonstrate receptive skills and knowledge.Using pictures for expressive communicationrequires creativity and an unwavering focus onthe goal: achieving social communication that ismeaningful by broadening the scope of interac-tions beyond simplistic demonstration of knowl-edge and allowing the AAC user to develop theunique personhood that stems from the ability toexpress his thoughts. Failure to understand howto use symbols to support communication hasmajor consequences; children who have had topoint to pictures over and over again in learn-ing tasks need an entirely different type of expe-rience in order to recognize the value of usingpictures to develop connections with the peoplearound them. The focus shifts from demonstra-tion of knowledge to demonstration of a desireto engage other people both in the ideas that areinteresting to the AAC user and in discussions ofthe ideas that interests others.2.7.1 Vocabulary Selection for an AACSystemThe goal for vocabulary selection is to providea means for the child to interact with others toparticipate fully in home, school, and communityenvironments (ASHA 1993). Selection of mo-tivating vocabulary is crucial if the child is ex-pected to improve his communication skills. Thismeans that the child’s interests are consideredfirst, and the vocabulary should include a varietyof word types. While nouns provide the child op-portunities to meet basic wants and needs, the vo-cabulary is not varied enough to allow the childto learn or experience the benefits of using a richcommunication system to meet social and emo-tional needs.Vocabulary development is as closely linkedto social and emotional development as it is tolanguage development. As they mature, childrenare expected to talk about their unhappiness rath-er than engage in misbehavior. Parents of typi-cally developing children spend a great deal ofC. A. Page and P. D. Quattlebaum
  17. 17. 39time and energy supporting this aspect of devel-opment at least until their children are old enoughto live independently. A number of reports indi-cate that children with delayed language skillsshow an increased prevalence of problem behav-iors. (Chamberlain et al. 1993; Pinborough-Zim-merman et al. 2007; Prizant et al. 1990; Sigafoos2000). Therefore it is not surprising that evenwhen early intervention has taken place, chil-dren with severe communication disorders mayhave behavior problems that must be addressed.Concerns may include ADHD, frustration, tan-trums, aggression, withdrawal, or combinationsof these. Careful vocabulary selection can pro-vide acceptable communication to replace theseproblem or challenging behaviors. The researchis compelling, and it shows that improved com-munication skills can dramatically improve be-havior (Sigafoos et al. 2009; Wacker et al. 2002).Vocabulary selection should rely heavily onwhat is known as core vocabulary. Core vo-cabulary consists of a few hundred words thatmake up about 80% of what typical speakers say(Baker et al. 2000). Most of the core vocabularywords are not easy to represent with pictures orobjects so the symbols for them may have to betaught. These words include pronouns, verbs,articles, adjectives, and demonstratives. If achild’s beginning AAC system offers a limitedamount of messages on the communication de-vice, core vocabulary can maximize availablemessage space by providing a small vocabularyset that generalizes across communication en-vironments. Further, core vocabulary facilitatesgenerative language skills ( Cannon and Edmond2009). Generative language provides opportuni-ties to express fuller meaning as a result of put-ting words together. For example: a child usinga voice-output communication device can sendone prerecorded message “Let’s go to McDon-ald’s,” or send two prerecorded messages “go”and “eat.” The sentence indicates only onemeaning, whereas combining words allows thechild to begin an interaction with their commu-nication partner who will then ask, “Where doyou want to go to eat?” This allows the childto experience new things by asking for differ-ent dining places over time. An additional ben-efit is that the child learns the rules of syntax bycombining words to create different meanings.Careful consideration should be given to storingsentences that address more urgent or frequentneeds as single messages. These may include “Ineed help,” “Please ask yes/no questions,” or“It’s not on my communication board/device.”For other messages, access to the core vocabu-lary should be the priority.2.7.2 Routine-Based InterventionsRoutine-based interventions begin with the in-formation obtained from the ecological inven-tory. This information is used for introducingmany opportunities for the child to communicatethroughout the day during typical activities. Thevocabulary may be available in one or more typesof symbols or devices and is conducive to com-munication exchanges throughout the day.2.7.3 Writing Individualized EducationPlans (IEPs) for AAC Use in theClassroomThe Individuals with Disabilities Education Act(IDEA 2004) states that the need for assistivetechnology must be considered for every childwith a disability. Assistive Technology devicesare defined in IDEA 2004 (§ 300.5) as “any item,piece of equipment, or product system, whetheracquired commercially off the shelf, modified, orcustomized, that is used to increase, maintain, orimprove functional capabilities of children withdisabilities.” One type of assistive technology isAAC devices. IDEA 2004 (§ 300.6) defines anassistive technology service as “any service thatdirectly assists an individual with a disabilityin the selection, acquisition, or use of an assis-tive technology device.” The service includes afunctional evaluation in the child’s natural en-vironment; providing acquisition to an assistivetechnology device; customization, maintenance,and repair of the device; coordinating therapies,interventions, and services with current educa-tion and rehabilitation plans; and training the2  Severe Communication Disorders
  18. 18. 40child who uses the device and the child’s com-munication partners. IDEA2004 (§ 300.105) alsodescribes each school’s responsibility to provideassistive technology devices or services if theseare required as a part of the child’s special educa-tion, related services, or supplementary aids andservices.If the IEP team determines that AAC is need-ed, then the components of this intervention mustbe described in the child’s IEP. To ensure the useof AAC in the classroom, the team documents thechild’s communication, academic and functionalneeds along with the child’s strengths. A state-ment is included in the IEP about the child’s aca-demic achievement and functional performance,including how the child’s disability affects par-ticipation and progress in the general educationcurriculum.Based on this information, measurable an-nual educational and functional goals and objec-tives are written in the child’s IEP (Downey et al.2004). An academic goal should be written toinclude the area of need; the direction of change;the level of attainment (Wright and Laffin 2001);and how the AAC device relates to a functionaltask. For example, the present level of academicachievement and functional performance mayshow that the child uses varying vocalizations toget attention, greet others, to protest and to answersimple yes and no questions. The child also useseye gaze to indicate a desire for things in the im-mediate environment. With a new focus on AAC,the child has begun to demonstrate some successusing eye gaze to select one of four choices foractivities and can push a single-message voiceoutput device with the left hand. An example ofa short-term objective is: During group singingtime, the child will use a single-message, voice-output device to participate with peers in the re-peated chorus 90% of the time as observed dur-ing 10 random trials. Another example could be:Using a portable eye gaze frame, the child willindicate a preference between four choices 80%of the time in five random trials. Notice that thefocus of these objectives is on relating the useof the technology to a functional outcome. Theequipment should not be viewed as an end in it-self, but rather a means to an end.2.7.4 SLPs’Intervention Rolesand ResponsibilitiesThe American Speech-Language Hearing Asso-ciation has prepared a position statement on theroles and responsibilities of SLPs with respectto AAC. It states that providing AAC services iswithin an SLP’s scope of practice. SLPs shouldacquire training and resources to serve thosewho may benefit from AAC; assess and providefunctional treatment with a multi-disciplinaryteam approach; use a multimodality approach;document outcomes; and recognize and supportthe way an AAC user prefers to communicateto maintain and promote quality of life (ASHA2005). SLPs should have knowledge of typicaldevelopmental stages and skills, conduct compre-hensive assessments, identify strategies and im-plement a comprehensive intervention plan, andassess effectiveness of the AAC system (ASHA2002). If the SLP has not had adequate trainingin AAC practice, he or she must refer to anotherprofessional who can provide quality services. Creating/ProvidingCommunication SystemsBecause AAC is consumer driven, the type ofsymbols, layout of symbols, language system,and level of technology are determined individ-ually for each child and are components of thecommunication system. More than one low-techcommunication system can be created to meet thecommunication needs across different environ-ments. Typically, the child’s SLP is responsiblefor the construction of low-tech communicationsystems or securing equipment loans for mid- orhigh-tech system trials. Low-tech communica-tion devices can be constructed and providedimmediately so that higher-level communicationskills are nurtured in advance of a more sophisti-cated communication system that may be needed.Sometimes AAC devices are purchased justbefore students transition into new programs andat other times the parents may purchase deviceswithout the type of assessment or device trial de-scribed as best practice. This has occurred withincreasing frequency as mainstream devices havebecome more popular as less expensive alterna-C. A. Page and P. D. Quattlebaum
  19. 19. 41tives to dedicated AAC devices. As a result, theremay be different opinions about what device bestmeets the child’s needs. At these times, utmostdiplomacy and regard for each team member’scontribution is important in determining howexisting devices fit into the child’s multimodalcommunication system. Educating CommunicationPartnersThe success of a child’s communication systemincreases when SLPs teach parents, teachers,teaching assistants, other therapists and aids howto encourage the child’s functional use of thecommunication system throughout the day. TheSLP should also teach these partners to model theuse of the communication system and learn pro-gramming basics for mid- and high-tech devices.Team participation and feedback are essential aschanges and updates to the available vocabularyand symbol layout are necessary as the childlearns a new communication system. Therapeutic AAC Device TrialsUpon using the AAC device consistently for sev-eral days, the child may begin to interact with thedevice less and less or refuse to use the device.Some children may not be able to express them-selves well enough to give an adequate explana-tion for this rejection. There are many reasons thatthe device may be neglected or refused. The de-vice may be too heavy, or the symbols may be toosmall, too complex, too abstract or unmotivating.Perhaps the communication partners are not mod-eling and encouraging the use of the device dur-ing the naturally occurring activities. The SLP willwant to contact the team members to discuss theirimpressions of why the child is resistant to usingthe communication device and implement changesbased on observation and feedback from them.Documenting the level of success the child hasusing the device provides data to share with fund-ing sources. Providing data on several differentAAC device trials informs funding sources thatthe device is recommended based on evidence ofbeing the optimal fit for a particular child’s com-munication needs and not because it is the onlyone tried or the one deemed best in the market. Funding and Letters of MedicalNecessity (LMN)Professionals who support children with com-munication disorders can reach consensus on thepremises that (a) communication is a fundamen-tal element of human existence, (b) without com-munication, interactions that nurture basic healthare not possible, and (c) electronic communica-tion devices are a reasonable response wheneverall lower-tech options have been considered andproven inadequate. Usually vigorous efforts areneeded to secure funding for these more costlydevices. Assisting with funding requests requiresdedication and a significant time commitment ofthe SLP.In addition to the traditional speech and lan-guage evaluation and report, Medicaid and otherthird party payers also require the SLP to write aletter of medical necessity (LMN). The LMN in-corporates specific information about the child’scommunication skills and howAAC equipment isable to meet those needs and is sent to the physi-cian to request a physician’s order for a particularAAC device. The LMN and the physician’s orderare used for applying for funding and justifyingthe request through a variety of payer sources. Ifthe initial funding request is denied, an appealletter is written with additional justification.School districts are required to provide com-munication devices for a child if they are deemednecessary for the child to receive a Free and Ap-propriate Public Education (FAPE). Schools maypurchase an AAC device through their budget orthrough available federal or state grants. It is notunusual for schools to be reluctant to send elec-tronic AAC devices home with children. If theAAC device is written in the IEP as required toolfor the child to complete homework, then the de-vice must be sent home with the child to ensure aFAPE. A limited number of federal or state grantsmay be available to schools to purchase AAC de-vices.As a result of funding constraints that agen-cies face, some may feel compelled to dividecommunication into components that relate tohome, school, medical settings, etc. or to developspecific guidelines that place constraints on fund-ing based on variables such as age and type of2  Severe Communication Disorders
  20. 20. 42disability. However, it is not possible for SLPs toethically restrict communication opportunities toa specific environment.If it is appropriate for the child to use a mid- tohigh-tech AAC device beyond the school setting(e.g., the home and the community), insuranceor Medicaid funding may be investigated. In-surance options must be explored prior to seek-ing Medicaid funding as Medicaid is the payerof last resort. To receive Medicaid funding, thechild must be eligible for Medicaid and the AACdevice must be deemed medically necessary. Pri-vate avenues of funding include church groups,service clubs such as Lion’s Club, Sertoma Club,and Shriner’s, local charities and private pay.While the value of communication cannot beoverstated as it relates to the potential for par-ticipation in the daily routine and communicat-ing health concerns, fiscal responsibility is anequally important consideration. The purchaseof an electronic AAC device is appropriate onlywhen there is compelling documentation of theother strategies and techniques that have beentried and have proven inadequate. It is reasonableto assume that more expensive communicationdevices would require extensive documentationthat explains why less expensive alternatives areinadequate and that these requests would be scru-tinized very carefully.2.8 Parents’Rolesand ResponsibilitiesParents whose children have severe communi-cation disorders are thrust into systems and ser-vices that can be confusing and overwhelming.For some parents to be successful participants inAAC implementation, they may need an initialperiod for mourning and acceptance (Seligman-Wine 2007). Team members have to respect thisjourney and support both parents and children asthey move through the grief process.It is not possible to predict how quickly par-ents will move toward acceptance of AAC sys-tems, and research shows that parent involvementvaries greatly during AAC assessment and imple-mentation (Bailey et al. 2006). Some basic respon-sibilities that parents face when their child firstreceives an AAC device include programming,participating in vocabulary selection, facilitatingdevice use across settings, modeling device use,troubleshooting device problems, and the dailyupkeep and cleaning of the device. Parents mustalso allocate the time and effort required for theseactivities as they continue to support their child’sdevelopment in other areas. They will benefitfrom referral to support groups or possibly indi-vidual counseling as they balance all the demandsof raising a child with special needs.2.8.1 Parent Participation in AACTrainingTraining is often available from the child’s SLPand device vendors and through workshops, con-ferences, seminars, and webinars held by special-ists in the field. The parents’goal will be learninghow to maximize naturally occurring commu-nication interactions through modeling the useof the device in motivating activities. They alsoneed to learn to program and maintain electroniccommunication devices, make decisions aboutappropriate vocabulary, and recognize possiblesigns of need for small or large changes to a com-munication system. Acquiring this amount of in-formation and skill may seem overwhelming atfirst, but it can be learned over time.2.8.2 Creating Opportunities for AACUse Across EnvironmentsTraining the child to use AAC strategies in thehome and community requires that parents be-come familiar with the AAC objectives and howto apply them during naturally occurring activi-ties. Parents also need to educate other familymembers and significant others in the communityabout how best to communicate with their child.Including a message on the child’s communica-tion device stating how the child communicatesand how others may best communicate with thechild may be beneficial. Children always requiremany opportunities to practice communicationC. A. Page and P. D. Quattlebaum
  21. 21. 43skills to facilitate communication in and acrossenvironments. For example, a child may learn touse his communication system at home to talkwith his parents about his experiences in school(Bailey et al. 2006).2.8.3 Advocating for the ChildA parent’s ability to advocate for their child’sright to communicate, obtain an AAC assessmentandAAC intervention requires knowledge of fed-eral and state laws and policies and procedures.The onus is often on the parent to become self-educated about their children’s rights and avail-able services and resources. Schools, state techact programs, early intervention agencies, andsupport groups can be valuable resources for thisinformation. A parent may need to remind pro-fessionals to include them as part of their child’sassessment team, as participants in device selec-tion, and as participants in vocabulary selectionon the communication device.Transition planning  Specific transitions dur-ing the child’s development may trigger consid-eration of an AAC reassessment. Examples aremoving to a new school or home or when thedevelopmental picture changes significantly.Parents will need to meet with the child’s schoolteam before and after changes take place toensure that the AAC system travels with the childand continues to meet the communication needsof the child. An excellent resource for supportingolder students is Transition Strategies for Adoles-cents Young Adults Who Use AAC (McNaugh-ton and Beukelman 2010).2.8.4 UpdatingAnAAC system should provide a means for allow-ing a child to meet his communication needs nowand in the future. Ongoing monitoring is needed todetermine if theAAC system is providing a meansfor the child to engage meaningfully in social rela-tionships and participate in activities with success(Beukelman and Mirenda 2005). The monitoringand updating of an AAC system is dynamic in na-ture and therefore never ends. The AAC systemsused by children typically need updating eachtime a significant school transition occurs or whenthere is a significant change in development. Asthe child’s communication and literacy skills im-prove, the AAC system will again need updating.A successful AAC system is based on the needsidentified during the assessment and provides ameans to expand and thereby enhance the qualityof social interactions and activities commensuratewith the child’s typically developing peers.2.9 Literacy, Language, and AACIt has been suggested that “children with devel-opmental speech/language impairments are at ahigher risk for reading disabilities than typicalpeers with no history of speech/language impair-ment” (Schuele 2004, p. 176). Factors that maypositively influence a child’s literacy skills areplenty of opportunities to practice reading andwriting, exposure to topics of interest to the child,regular exposure to peers who read and write,and many experiences of success while readingand writing (Special Education Technology–Brit-ish Columbia 2008).A child with a severe communication dis-ability may begin communicating with AACusing single word messages only which shouldbe drawn from core vocabulary lists. Often, ini-tial communication focuses on the use of singlenouns or verbs. If single-word messages are se-lected to nurture symbol sequencing, the childhas the opportunity to combine single symbolsto demonstrate an understanding of semantics,combine symbols to communicate phrases, orsentences that may increase the specificity ofmeaning, promote generative language and de-velop knowledge of syntax. Syntax refers to howwords are combined and is important for bothcommunication and literacy skills. For example,the child may initially use the communicationsystem to express “juice.” With practice, thechild may combine single words to convey spe-cific information about the juice such as “wantjuice,” “no juice,” or “more juice.” This skill can2  Severe Communication Disorders
  22. 22. 44be extended to literacy as the child learns to readand perhaps write or type “juice” and other wordsthat can be combined with “juice.”The increased number of opportunities forcommunication using high-tech communicationdevices also facilitates literacy skills throughinterfaces with other technology. Operating sys-tems in high-tech communication devices ofteninclude word processing, phone, and internetwith e-mail and instant messaging capabilities.The child can write and communicate with otherswhile using his specific access method to practiceliteracy skills in these motivating activities usinga combination of video, photographs, graphics,whole words, and individual letters for spelling.2.10 Discharge from InterventionSLPs are prepared to nurture the child’s lan-guage skills, both through direct services andthrough training teachers and families. Planningfor discharge from formal intervention shouldbe part of the initial assessment. The IEP teamdetermines the criteria for discharging the childfrom speech-language pathology interventionthrough analysis of (a) the communication skillsacquired by the child, (b) the level of indepen-dence the child has achieved, (c) the adequacy oftraining and followthrough of teachers, parents,and child for maintaining and updating the com-munication system as needed, (d) the ability ofteachers, parents, and/or the child to determineand request a reassessment if the need is pres-ent. Discharge should be a natural evolution of acarefully planned intervention program. In mostinstances, when children have severe communi-cation disorders, the parents should be preparedfor the possibility that the child may need addi-tional services in the future.2.11 SummaryFor children with severe communication diffi-culties, AAC is a powerful outlet for celebratingthe fundamental human connection that all chil-dren need to thrive. Healthcare providers are in aunique position to help identify and support chil-dren with severe communication disorders, andthis begins with helping the caregivers to accessAAC services for these children. Research hasconsistently shown that the use of AAC strate-gies does not interfere with the development ofspeech. Further, when the child’s caregivers useAAC strategies to support language develop-ment, the outcomes improve. All children whohave significant developmental delays and thosewho may be at risk of severe communication dif-ficulties should have high quality interventionsthat are proven to enhance communication skills,and AAC strategies are in this category.ReferencesAmerican Speech-Language-HearingAssociation (ASHA).(2002). Augmentative and alternative communication:Knowledge and skills for service delivery. ASHA Sup-plement 22, 97–106.AmericanSpeech-Language-HearingAssociation(ASHA).(2005). Roles and responsibilities of speech-languagepathologists with respect to alternative communication:Position statement. ASHA Supplement 25, 1–2.American Speech-Language-HearingAssociation (ASHA)Special Interest Division 4: Fluency and Fluency Dis-orders. (1999). Terminology pertaining to fluency andfluency disorders: Guidelines. ASHA, 41(Suppl. 19),29–36.Angelo, D. H. (2000). Impact of augmentative and alter-native communication devices on families. Augmen-tative and Alternative Communication, 16(1), 37–47.ASHA Ad Hoc Committee on Service Delivery in theSchools. (1993). Definitions of communication disor-ders and variations. ASHA, 35(Suppl. 10), 40–41.Bailey, R. L., Parette Jr., H. P., Stoner, J. B., Angell, M.E., Carroll, K. (2006). Family members’ percep-tions of augmentative and alternative communicationdevice use. Language, Speech, and Hearing Servicesin Schools, 37, 50–60.Baker, B., Hill, K., Devylder, R. (2000). Core vocabularyis the same across environments. Paper presented ata meeting of the Technology and Persons with Dis-abilities Conference. California State University,Northridge. http://www.csun.edu/cod/conf/2000/proceedings/0259Baker.htm.Beukelman, D. R. Mirenda, P. (2005). Augmentativeand alternative communication: Supporting childrenand adults with complex communication needs (3rded.). Baltimore: Brookes.Binger, C., Light, J. (2006). Demographics of pre-schoolers who require AAC. Language, Speech, andHearing Services in Schools, 37, 200–208.C. A. Page and P. D. Quattlebaum
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  25. 25. http://www.springer.com/978-1-4614-2334-8