Communication Supports for People with Motor Speech Disorders

Elizabeth K. Hanson and Susan K. Fager

Communication supports for people with motor speech disorders can include strategies and technologies to supplement natural speech efforts, resolve communication breakdowns, and replace natural speech when necessary to enhance participation in all communicative contexts. This article emphasizes communication supports that can enhance participation, as described in the World Health Organization’s International Classiﬁcation of Functioning, Disability and Health. The article begins with a discussion of partner and patient-reported assessments to evaluate participation levels and barriers to participation. Then, it provides an overview of communication supports for speakers with motor speech disorders, organized by the status of the disorder as stable, improving, or degenerative. The article includes nine case examples to illustrate principles and provide examples of how to address stable and changing needs. Key words: alphabet supplementation, augmentative and alternative communication, communication partner, digital images, dysarthria, motor speech, photographic supplementation, topic supplementation

HIS ARTICLE describes the use of com- ciently and effectively. The focus is on the use T munication supports, also referred to as of supports and strategies to enhance spoken augmentative and alternative communication communication, and with it, participation and options, to assist adult speakers with motor independence in a variety of situations. speech disorders to communicate more effi- Individuals with a range of diagnoses and severity levels can have motor speech disorders. Some individuals have motor speech disorders as primary concerns; others have Author Affiliations: Communication Sciences and them concomitant with language or cognitive- Disorders, University of South Dakota, Vermillion communicative impairment. Individuals with (Dr Hanson); and Communication Center of motor speech disorders can be described as ei- Excellence, Institute for Rehabilitation Science and Engineering, Madonna Rehabilitation Hospital, ther stable (chronic with no changes), recov- Lincoln, Nebraska (Dr Fager). ering, or degenerating in their motor speech This article was developed, in part, under a grant from abilities. These pervasive conditions have a the National Institute on Disability, Independent Liv- substantial impact on participation in home, ing, and Rehabilitation Research (NIDILRR grant # work, and community settings. The following 90RE5017-02-01). NIDILRR is a center within the Ad- ministration for Community Living (ACL), Department case example is a composite of cases facing of Health and Human Services (HHS). The contents of similar issues. It is used to illustrate the im- this article do not necessarily represent the policy of pact a motor speech disorder can have on a NIDILRR, ACL, and HHS, and you should not assume endorsement by the Federal Government. person’s participation and autonomy. Case example 1. A 28-year-old man with The authors have indicated that they have no financial and no nonfinancial relationships to disclose. spastic cerebral palsy had recently moved from his parents’ home to an assisted living Corresponding Author: Elizabeth K. Hanson, PhD, Communication Sciences and Disorders, University of facility as his next step toward achieving his South Dakota, 414 E Clark St, Vermillion, SD 57069 personal goal of increasing independence as ([email protected]). an adult. He had spastic dysarthria, with an DOI: 10.1097/TLD.0000000000000137 intelligibility level of only 40% at the sentence 375

level, and spent the majority of his life com- tion Effectiveness Survey (Donovan, Velozo, municating with close friends and family us- & Rosenbek, 2007) or the Social Networks As- ing his natural speech, which was dysarthric sessment (Blackstone & Hunt Berg, 2012) de- but mostly intelligible to those who knew him scribed later. Application of communication well. However, when this young man made supports is driven by the participation level. his first unassisted visit to a bank to set up Participation refers to how well an individ- a bank account, he was extremely frustrated ual manages interactions in societal contexts. with the bank teller’s inability to understand The construct of participation takes two fac- him. As he became more frustrated, his spas- tors into account: performance of the indi- ticity increased, and his speech became less vidual with a motor speech disorder and the intelligible. The bank staff, alarmed by his in- response of their communication partner(s). creasing spasticity, contacted emergency per- Participation goals, along with consideration sonnel, as they thought he was having a health of the state of the speaker’s neurological con- crisis. The emergency medical technicians ar- dition (i.e., stable, recovering, or degenera- rived, determined where the man was resid- tive), drive clinical decision-making and inter- ing, and called the director of the assisted ventions related to communication supports living facility so that he could come to the for people with motor speech disorders. bank. The individual was embarrassed and an- Participation for persons with motor gry about the events that occurred. He real- speech disorders may be best assessed ized that he had no method or way to support through patient-reported outcome measures his communication attempts for use in such that document the individual’s perspective circumstances. He had always relied on his on his or her communication (Donovan natural speech because his environment typ- et al., 2007). For example, the Communica- ically contained individuals who knew him tion Effectiveness Survey, first introduced by well, and he had always been accompanied by Yorkston, Beukelman, Strand, and Bell (1999), a family member or friend. In order for him to revised by Ball, Beukelman, and Pattee (2004), participate in this new environment and meet and further revised and validated by Donovan his goals (increasing his independence), he et al. (2007), is an eight-item survey that doc- needed access to strategies to support accu- uments change in participation levels from rate communication with new and unfamiliar baseline to posttreatment for motor speech listeners. disorders. The survey uses a four-category response scale (from 1 = “not at all effective” PARTICIPATION AND RELATED to 4 = “very effective”) to gather input about ASSESSMENT TOOLS communication effectiveness in different contexts such as conversing with a family mem- Participation is a key component in the ber or friends at home, having a conversation World Health Organization’s International in a car, or with someone at a distance. In our Classification of Functioning, Disability and clinical practices, we have used the Communi- Health (World Health Organization, n.d.). This cation Effectiveness Survey with family mem- framework provides a model comprising im- bers of individuals with motor speech disor- pairment, activity, and participation. Motor ders, as well as the individuals themselves, speech disorders are assessed and diagnosed to compare perspectives. This can help indi- at the impairment level (e.g., decreased res- viduals understand the degree to which their piratory support, velopharyngeal incompe- communication effectiveness is impacted by tence, and imprecise articulation). Their im- their dysarthria, even with people who know pact on function is measured at the activity them well. level (e.g., objective speech intelligibility mea- Another tool that captures the participation sures). Participation may be assessed infor- aspect of communication disorders is the mally or with tools such as the Communica- Social Networks (Blackstone & Hunt Berg,

2012) assessment protocol. It uses compre- information and case examples to illustrate hensive and systematic information gathering how to select among such supports and indi- and observation procedures to obtain infor- vidualize them to address participation needs mation about the individual’s communication of individuals whose motor speech disorder strengths, environments, communication status is stable, recovering, or degenerative. partners, and differences in the partners’ ability and willingness to support the individual’s communication by learning new strategies. Supports when motor speech The protocol does not require training to impairment status is stable administer. The administrator gathers infor- Congenital neurologic conditions are often mation from multiple sources including inter- stable or chronic in their status. A report by views with the individual with the communi- the Centers for Disease Control and Preven- cation disorder (if possible), a family member, tion (2017) indicated that cerebral palsy is the and someone who is a paid communication most common motor disability in children, partner (such as a direct service professional, with worldwide prevalence reports that range personal care attendant, teacher, or speech- from 1.5 to more than 4 per 1,000 live births. language pathologist). The protocol identifies In the majority of cases, individuals with cere- the individual’s communication modalities, bral palsy have a motor speech impairment, strengths, and assistive technologies used, and these conditions are relatively stable into and further matches those categories to adulthood. Other congenital neurologic con- communication partners with whom they ditions, such as Duchenne and Becker mus- are used. For example, the individual may cular dystrophy, also cause relatively stable, communicate effectively with a speech- persistent motor speech impairment (Bushby generating device but only use it with certain et al., 2009). Acquired neurologic conditions partners who are willing to accommodate that arise from brain injury or stroke may that modality. Ultimately, the Social Networks result in a stable and chronic dysarthria or protocol leads to a summary of communica- apraxia of speech after a period of recovery. tion strengths, modalities, and partners who Cerebral palsy and other chronic and sta- are most willing to support communication ble motor speech disorders are often resis- or learn new supports, and guides the user tant to traditional behavioral intervention ap- in setting intervention goals. It is useful at proaches that focus on speech subsystem re- the participation level as a pre- and posttest mediation (Hustad, 2010), which means that to demonstrate change after intervention for improving participation and functioning may individuals with motor speech disorders. rely more on provision of communicative supports than on communicative interventions SUPPORTS RELATED TO MOTOR SPEECH aimed at reducing impairment. DISORDER STATUS Individuals with stable motor speech impairment may rely on speech for most com- Varied strategies could be used to support munication interactions, but experience dif- natural speech by people with motor speech ficulty conveying detailed information. They disorders whose primary communication communicate most effectively with familiar challenges are with speech intelligibility. An communication partners but find speaking overview of common speech supplemen- with unfamiliar partners to be challenging, tation supports for individuals with motor as in case example 1. Interacting with health speech impairments appears in Table 1. The care providers and other service providers four categories of supports summarized in this may be especially fraught with frustration and table are gestures, photographic supports, anxiety when important or complex informa- alphabet supplementation, and topic sup- tion is at stake. Case example 2 shows how, plementation. The sections that follow offer for one person with chronic speech motor

Copyright © 2017 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited. 378 TOPICS IN LANGUAGE DISORDERS/OCTOBER–DECEMBER 2017 ) continues ( (2005) Ullman (2013) and Isaacs (2002) Hustad and Garcia Beukelman, Taylor, and Hanson et al. (2013) Van Dijck (2008) Schiano, Chen, Coreena, Natural Usually easy to guess Shown to be as effective as other supplementation strategies Mobile technologies increase access to incorporating real-time digital images Web-based image search tools provide easy access to a wide range ofimages digital Augments speech by providing context or supplementing content with detail that is not easily spoken r r r r r r Body—no extra system or tools needed Printed photographs Mobile devices (i.e., phones and tablets) Communication software on speech-generating devices r r r r action, without words (e.g., holding a spoon, dipping into imaginary bowl, and bring to mouth) Common speech supplementation techniques including a description of the technique, the modality used in the technique, Speech Gestures Moving a body part to suggest Photographic supports Digital/photographic images Supplementation Techniques Description Modality Beneﬁts References Table 1. beneﬁts of the technique, and associated references

Copyright © 2017 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited. Communication Supports for People With Motor Speech Disorders 379 Hanson (2015) Dailey, (2003) Fercho, Baugh, and Hanson et al. (2013) Hanson et al. (2004) Hustad and Lee (2008) Hustad, Jones, and Helps communication partner perceive word boundaries by slowing speaking rate First letters provide phonemic cues to assist the communication partner in perceiving the initial phoneme May increase articulatory accuracy Provides the topic of the spoken message, which allows communication partner to guess spoken words r r r r ) Laminated paper printed with letters and short phrases On-screen keyboard on tablet device On-screen keyboard on speech-generating device (may also include word prediction list) Laminated paper with topic words On-screen display on tablet device or speech-generating device r r r r r Continued letter of each spoken word item in a list ofbeginning topics of at an the utterance Speaker points to the first Common speech supplementation techniques including a description of the technique, the modality used in the technique, supplementation Speech Alphabet Topic supplementation Speaker points to a specific Supplementation Techniques Description Modality Benefits References Table 1. benefits of the technique, and associated references (

impairment, photographs helped to fill the of the tub on the tablet, and gesturing to her gap between basic and detailed information. weak right leg, she communicated about the Case example 2. An 83-year-old woman challenge of bathing, and her doctor wrote had a series of cerebral vascular accidents in orders for a biweekly bath aide and physical her 70s that left her with flaccid dysarthria therapy from a home health agency. This com- characterized by imprecise articulation and bination of supports allowed her to remain an hypernasality/nasal emissions, making it dif- active participant in her family and in direct- ficult for communication partners to under- ing her health and medical care. stand her natural speech. Yet, she relied on natural speech as her primary communica- Special considerations for supports tion modality. Despite a slight right hemi- when conditions are stable plegia, she lived alone in her home with Speech supplementation with topic cues assistance from a home health provider for (i.e., pointing to the topic of an utterance, weekly shopping, light house cleaning, and such as “pets” before talking about a new some meal preparation. Her two adult chil- puppy) or the use of first-letter cues, can dren and grandchildren lived several hours support intelligibility for people with stable away. When reading the local newspaper, she motor speech disorders of varied types. Such used the flyer insert from the local grocery supports are usually not necessary for commu- store to circle items that she wanted to pur- nicators with stable conditions in situations chase during their weekly grocery trips. She with familiar partners, but they may be useful also saved the weather forecast to show her to establish topics and repair communication staff if she wanted to take care of something breakdowns with unfamiliar communication outside, such as water her plants if the fore- partners. Therefore, self-awareness of com- cast was hot and dry. She was adept at us- munication effectiveness is important, as the ing personal photographs to supplement her speaker must be aware of communication speech. For example, when asked who sent breakdowns and remember to use the repair her a box of chocolates she retrieved a photo- strategy. A focus in therapy on self-monitoring graph of a friend and, through gestures, lim- skills and strategic use of a supplementation ited speech, and the photograph, communi- display with letters, words, and photographs cated that he was an old friend who lived far to repair communication breakdowns can be away and sent her candy every year. used to support successful communication. Because of this existing communicative Individuals with stable status may reside strength in using graphic supports to commu- in living environments involving consistent nicate, her speech-language pathologist sus- communicative partners, such as family pected she would be successful with simple members, or with consistent staff in group digital photography to extend her capabilities homes, assisted living facilities, or long-term for detailed communication. Her family ea- care facilities. For individuals with stable gerly bought her a smaller tablet device, and motor speech disorders, residential transi- her speech-language pathologist integrated it tions may occur only when higher levels of into therapy sessions by teaching her how to care are needed related to aging or illness. access the camera application to take pho- In some living facilities, however, they may tographs and then retrieve them to show com- experience many changes in communication munication partners during conversations. partners because of the high turnover of She demonstrated mastery of this form of sup- direct support providers and other nonfamily plementation when she took a photograph of caregivers. The challenge then becomes her bathtub as a way to explain to her doc- training new caregivers, who begin as unfa- tor that she had difficulty stepping into the miliar communication partners, to adapt to tub independently. Again, through her limited the individual’s communication repair strate- speech (“no way! no way!”), the photograph gies. Communication partners need explicit

training to use communication support vascular accident, enjoyed weekly FaceTime strategies and facilitate the individual’s use of visits with her children and grandchildren on communication supports to repair commu- the tablet device purchased by her family. Al- nication breakdowns. For example, partners though she needed assistance to open the may need to learn that it is acceptable to ask application and initiate the call, she learned “What’s the first letter?” to cue the use of to pick up the tablet and change the cam- alphabet supplementation when a word is era direction to show her family items that not understood. Or they may need to ask for she could not otherwise describe. For exam- the topic of conversation while pointing to ple, when she received a bouquet of flowers a topic display, or to ask to see a picture to from her brother and sister-in-law, she told her understand more details. grandchildren about it by pointing the tablet Another situation that may pose a chal- at the bouquet on the table and then at the lenge for individuals with chronic motor greeting card that accompanied it when they speech disorders is telephone communica- asked who sent the flowers. tion. The challenges are caused by the limited acoustic signal that transmits the already Chronic conditions involving limited degraded speech signal (Hanson, Goldham- natural speech mer, & Bethard, 2016; Hanson & Sundheimer, Topic supplementation and alphabet sup- 2009), along with not seeing the speaker’s plementation can make it possible for an in- face and mouth, which would provide visual dividual to communicate with limited natural information (i.e., speech reading). In such sit- speech, although in some cases a speech gen- uations, individuals with motor speech im- erating device provides a modality for expres- pairment may point to first-letter cues, which sive language when natural speech is ineffec- can improve intelligibility although the com- tive. A speech generating device may offer an munication partner cannot see the letter cues alternative to natural speech or may be used during a telephone conversation. Research to repair communication breakdowns, even shows that speech intelligibility increases dur- when supplementation supports are used ing alphabet supplementation, even when (Hanson, Beukelman, & Yorkston, 2013). In the letter cues are not visible (Hanson, addition, many of the speech generating de- Yorkston, & Beukelman, 2004), perhaps be- vices currently available support digital pho- cause it slows the speaking rate and results in tographs and videos, which can also supple- more accurate articulatory targets (Hustad & ment natural speech by adding detail to the Lee, 2008). Beukelman and Yorkston (1977) basic message or carry a greater portion of reported an increase in speech intelligibil- the message for an individual who is non- ity and communication effectiveness when a speaking. Identifying which communication speaker with dysarthria pointed to first-letter supports and systems are appropriate for dif- cues during phone conversations with famil- ferent settings and situations can help the iar communication partners. Also, given the communicator increase effectiveness and de- variety of options for distance communication crease the frustration and isolation that of- through visual platforms, such as voice over ten accompanies severe communication im- Internet protocols like Skype and FaceTime, pairment. The following example shows how people with motor speech disorders who rely a speech-language pathologist balanced the on natural speech can participate in face-to- need for some speech output with the prefer- face conversations, which may improve their ences of her client. communication effectiveness. Case example Case example 4. A 29-year-old woman 3 shows how such programs can support com- with cerebral palsy lived alone in a ground- munication for a person with dysarthria. floor apartment and walked with an ex- Case example 3. The same 83-year old, who tremely ataxic gait. Her speech was severely lived alone after a left hemisphere cerebral dysarthric and limited to vocalizing, which

was insufficient for supporting effective speech recovery in excess of 10 years pos- communication. She did not want a portable tonset (Jordan, 1994; Workinger & Netsell, speech generating device but preferred a 1992). This section describes communication small communication book that contained let- supports for people with varied but improv- ters, punctuation, numbers, a section of short ing motor speech patterns. phrases and topic words, as well as personal Many people with improving status may photographs that she used to communicate continue to rely on communication support details about common topics (see Table 1) strategies for long term, but their use of dif- and personal information. She had sufficient ferent techniques and the contexts in which fine motor skill to handle the book, locate the strategies are most useful may change as the desired page, and point to words, letters, their speech improves. Transitioning through and photographs. However, she needed voice various care settings is not uncommon for this output for telephone calls, which was her con- group, as they continue to improve. For exam- nection to family and method for scheduling ple, individuals who have sustained a severe public transportation rides. Together with her traumatic brain injury have been reported to speech-language pathologist, she determined transition through a full continuum of care that the solution for this need was a large com- in the years after their injury, often includ- puter with speakers that supported synthe- ing transitions from acute care hospital, to sized speech output software, which allowed inpatient rehabilitation, to outpatient rehabil- her to preprogram messages and to spell novel itation, to skilled nursing facility, to assisted messages when needed. Intervention focused living, and to community living with home on teaching her how to preprogram messages health support (Fager, Hux, Karantounis, and how to identify potential communica- & Beukelman, 2006). The caregivers and tion breakdown and repair strategies during communication partners can change substan- phone calls. A high-quality speakerphone was tially with each transition for these individ- placed near the computer speakers to pick up uals. With changing communication needs the synthesized speech output of the desktop and communication partners over time and system. She used this system to schedule rides across settings, rehabilitation teams might es- and appointments. She also used the system tablish someone in the role of communica- to call the speech-language pathologist when tion advocate. Communication advocates are she needed assistance, such as when she often family members or friends of the in- lost her communication book and needed a dividual who requires communication sup- replacement. ports. The communication advocate typically has the background information regarding the Supports when motor speech recommendation, implementation, and evo- impairment is improving lution of communication supports and can In some cases, acquired neurologic con- share this information with new caregivers ditions are accompanied by a motor speech to ensure that these supports continue to be impairment that is recovering or improving used (Beukelman, Fager, Ball, & Dietz, 2007; (Duffy, 2005). These impairments can result Fager, Hux, Beukelman, & Karantounis, 2006; from a wide range of etiologies, such as cere- Hemsley & Balandin, 2009). bral vascular accident, traumatic brain in- Communication supports for individuals jury, high-level spinal cord injury, Guillain- with improving motor speech impairment can Barre´ syndrome, and myasthenia gravis. Some play a unique role in communication effective- speakers may present with mild deficits for ness. First, because these individuals are often which they can compensate or that can be working toward recovery of some natural remediated with intervention. However, oth- speech, communication supports can be in- ers present with moderate-to-severe impair- troduced as a temporary means of supplemen- ments that follow a prolonged recovery path. tation early in recovery or when intelligibility Some researchers have reported functional is severely impaired. Second, communication

supports can play a direct role in intervention cueing to help him use his communication (Beukelman, Nordness, Yorkston, & Hux, supports. As he transitioned to his parents’ 2011; Fager, Doyle, & Karantounis, 2007). For home and outpatient therapy, his cognitive example, techniques such as alphabet supple- deficits began to improve and he required less mentation and topic supplementation rein- cueing to use his communication supports. force strategies often used in intervention by He began to initiate the use of the supports to requiring the person to slow his or her speech resolve communication breakdowns. As his productions, which, in turn, results in delib- intelligibility began to improve (60% at word erate articulatory placement and increased level and 30% at sentence level), he was in- segmentation of words. Third, as speech im- troduced to alphabet supplementation using proves, intervention may focus on identifying a letter board (Table 1). Although he required the contexts where communication support maximal cues initially to use this strategy, he strategies may be most effective. For example, began to use it with greater independence as intervention may help the person identify his cognitive abilities improved. when to initiate a strategy during a communi- At this time, he began to integrate back cation breakdown, rather than continuing to into limited community settings (e.g., home, attempt natural speech with no support. In social outings with friends and family), and addition, intervention may help the person his communication partners were familiar. In- identify which communication partners tervention focused on continued use of his (e.g., familiar vs. unfamiliar) require different communication boards and alphabet supple- types of communication supports to under- mentation with decreasing cues as his natu- stand messages being communicated. Case ral speech improved. Eventually, he moved example 5 illustrates some of these principles. out of his parents’ home into an assisted liv- Case example 5. A 20-year-old man who ing facility. In this setting, his opportunities sustained a severe traumatic brain injury as to communicate with a wider range of part- a result of a motor vehicle accident demon- ners increased, as did the need for him to strated severe mixed spastic-flaccid dysarthria manage his communication supports with a (20% intelligible at word level and 0% at sen- greater level of independence. Intervention tence level) at the beginning of his recovery. outcomes were evaluated and new interven- His recovery included multiple environments tion goals were determined with the Social and communication partners. Communica- Networks Assessment. Results indicated that tion supports were initiated in acute rehabil- his communication partners now included itation to support effective communication staff/residents of the assisted living facility, un- between health care providers and the young familiar people in the community, and people man (i.e., patient–provider communication; at a local gym. Contexts included face-to-face Blackstone, Beukelman, & Yorkston, 2015). and telephone communication. It was deter- They included the use of full message commu- mined that he would benefit from a support nication boards that had information about that included synthesized speech output to al- basic needs, activity choices for therapy, pain low him to participate with greater indepen- scales, orientation information, and social dence in these contexts. He used a tablet with messages for family/friends. Attempts at nat- the Compass1 application from TobiiDynavox ural speech were largely unsuccessful at this with full messages programmed to support level because of the severity of his dysarthria the communication of routine and predictable accompanied by cognitive impairments consistent with brain injury (e.g., recall/memory, initiation, and attention). This man’s communication supports served as a supplement and 1Compass communication software app by Tobii Dy- at times a replacement for his natural speech navox, 2100 Wharton Street, Suite 400, Pittsburgh, PA attempts. During acute care, communication 15203, https://www.tobiidynavox.com/en-US/products/ partners were taught to provide maximal software/

information (e.g., making a doctor’s appoint- ing motor abilities with disease progression. ment). In addition, he continued to use al- As a result, plans, for example, for help- phabet supplementation using a keyboard in- ing individuals transition from using a touch terface in the Compass application. Interven- screen to using eye tracking technology to tion focused on identifying which support access a speech generating device may be strategies to use given certain contexts (e.g., integrated into intervention (Beukelman & using alphabet supplemented speech during Mirenda, 2013). face-to-face communication breakdowns, us- To address these concerns, clinicians can ing pre-programmed messages, and spelling use a staging approach to guide clinical to communicate over the telephone). decision-making when planning communication supports for individuals with degenera- Supports when motor speech is tive conditions (Mathy et al., 2000). A staging degenerating approach can be designed to accommodate In some cases, impaired motor speech changes associated with ﬁve stages in the de- status does not improve or remain stable, but volution of speech intelligibility, which are degenerates. This occurs when individuals characterized as follows: (1) no detectable have neurodegenerative conditions such as speech disorder, (2) beginning evidence of amyotrophic lateral sclerosis, Parkinson’s motor speech impairment, (3) reduction in disease, or multiple sclerosis. Such indi- intelligibility, (4) natural speech no longer in- viduals often experience a deterioration telligible without augmentation, and (5) no of their motor speech system, resulting in functional speech (Mathy et al., 2000). Infor- progressing dysarthria (Ball, Fager, & Fried- mation about stages and examples of supports Oken, 2012; Yorkston, Klasner, & Swanson, for changing stages is provided in the sections 2001; Yunusova, Green, Linstrom, Pattee, & that follow. Zinman, 2010). Some individuals progress to complete anarthria (no speech). However, Maintaining participation in Stages 1 there is often a period where natural speech and 2 of degenerative conditions continues to be a substantial component of In Stage 1, when no detectable speech these individuals’ communication (Ball et al., disorder is present, it is typically a time 2012; Mathy, Yorkston, & Gutmann, 2000). when people have recently been diagnosed Such an evolving pattern requires special con- and their particular diagnosis has not yet im- sideration for providing supports for natural pacted their speech production capabilities. speech. The timing of appropriate communi- This stage often includes education of the per- cation supports can be guided by following a sonandthefamily.Theroleofcommunica- staging approach to clinical decision-making tion supports can be introduced to prepare when individuals have declining or degenera- the person for future recommendations and tive conditions (Ball et al., 2001; Ball, Beukel- provide reassurance that there are techniques man & Pattee, 2002; Ball, Beukelman, Ullman, and strategies available to support continued Maassen, & Pattee, 2005; Mathy et al., 2000). life participation as natural speech declines. For people with degenerative conditions, As the degenerative condition declines, participation challenges change over time, re- communication supports can be introduced quiring ongoing reassessment of needs and as the motor speech impairment begins to im- adjustment to the supports that are required. pact participation. Stage 2 occurs when the Adjustments may occur to the type of support, motor speech impairment becomes apparent, the kinds of messages included in the supports as indicated by an obvious communication (alphabet supplementation vs. word/picture disorder affecting intelligible speech, writ- boards), and access to the communication ing, and functional reading aloud. Although support. This is because many individuals speech may still be intelligible, breakdowns with degenerative conditions exhibit decreas- may begin to occur with unfamiliar listeners,

over the phone, or in noisy public settings of the tablet or smart phone) may be appro- (e.g., restaurant). Case example 6 offers an priate. The following case example illustrates illustration of this progression. this stage of progression. Case example 6. A 45-year-old man had bul- Case example 7. A 50-year-old woman with bar onset amyotrophic lateral sclerosis, which multiple sclerosis recently experienced an ex- primarily involves speech signs with no evi- acerbation of her condition. With this exac- dence of physical limitations yet in arms or erbation, her speech intelligibility decreased, legs in the early stages. At the time of this she demonstrated increased cognitive deﬁcits example, he exhibited Stage 2 characteris- (e.g., short-term memory limitations, impul- tics in that he noticed that he was required sivity, and problem-solving difﬁculty) and to frequently repeat himself to unfamiliar lis- challenges with vision. She moved in with her teners when in noisy environments, such as daughter because her family and physician in stores, restaurants, or parties. Appropriate were concerned about her safety. Her pre- communication supports for him at this stage vious communication supports had included included ways to support writing to clarify alphabet and topic supplementation (see messages and supplement natural speech at- Table 1) with occasional writing in a small tempts when communicating in noisy envi- notebook. Although she had primarily relied ronments. Examples included writing with on her natural speech, she used the other sup- pen/paper, note-taking applications for his ports to resolve communication breakdowns smart phone and computer tablets, and a Boo- with listeners who were unfamiliar with her gie Board electronic magic slate, which is a de- in the community. With the changes in her vice that allows the user to write a message on cognitive abilities, she was no longer able its surface that can be quickly erased with the to successfully implement the use of her al- press of a button. This individual could man- phabet and topic supplementation techniques age his communication exchanges using his without frequent cues from her communica- natural speech in all but a few select contexts. tion partners. The text on her supplementa- In those, he employed communication sup- tion boards was enlarged to accommodate her ports described earlier, which also prepared vision changes. Intervention focused on de- him for using similar and additional supports veloping an 8 × 12-communication book to maintain functioning and participation as (including full messages and personally rele- his condition evolved. vant digital pictures for quick recognition of messages), as she began to shift from relying Maintaining participation in Stage 3 primarily on her natural speech to communi- of degenerative conditions cate, to the use of external communication In Stage 3, which is characterized by re- supports in a wide range of contexts (home duction in intelligibility, individuals experi- and community). Intervention at this stage ence dysarthria so severe that partners can no also focused on partner training to cue her to longer understand them when they use only use her supports, identify the contexts where their natural speech. At this stage, commu- she may need the most cueing/support, and nication supports begin to play a prominent how to add content to the communication role in all contexts. Natural speech attempts book to support any new communication may still be combined with alphabet supple- opportunities. mentation strategies to support the partner’s ability to understand the messages being com- Maintaining participation in Stage municated. Written supports may continue to 4 of degenerative conditions be used if the person has adequate physical In Stage 4, natural communication abilities. If motor abilities are impaired, alter- strategies require supplementation by aug- native access to mobile devices (e.g., using mentative techniques to achieve effective an onscreen keyboard application activated communication. In this stage, some of the via switch scanning by touching the surface communication support strategies mentioned

in the earlier stages may still be implemented; and pages with full messages related to the however, the use of alternative access devices two contexts he enjoyed. These included so- (e.g., switch scanning), key guards, adapta- cial messages, messages specific to lessons be- tions to touch screens, and other techniques ing discussed in bible study, which his wife may be required to augment motor access could update, and comments he would fre- issues that are common in degenerative con- quently make during social interactions with ditions. As illustrated with case example 8, his friends at coffee. Touchscreen access mod- communication support strategies continue ifications were made to the device, including to be used extensively and begin to replace changing the touch screen setting to activate natural speech attempts more frequently, only when a finger is lifted off of the surface. as intelligibility and the ability to speak This was used to decrease inadvertent acti- decline. vations. The access methods for this device Case example 8. A 70-year-old retired man could be modified in the future if required with Parkinson’s disease exhibited severe mo- (e.g., by introducing single-switch scanning), tor speech impairment coupled with limited as his condition continued to decline. hand movement. Previously he had relied on alphabet supplementation (Table 1) at home Maintaining participation in Stage 5 and a text-to-speech device (Lightwriter SL402 of degenerative conditions by Abilia Toby Churchill) to support his com- In Stage 5, when no functional speech is munication in a bible study and during weekly present, individuals typically are nonspeak- coffee meetings with friends. He required ing and rely on speech generating devices communication partner cues to remind him and other strategies as a complete replace- to use these supports when communication ment for their natural speech. At this stage, breakdowns occurred because he was expe- if a person were referred in a timely manner, riencing decreased insight into the severity the formal evaluation for a speech generat- of his speech deficits. Recently, his ability to ing device would have already occurred. If accurately type on the LightwriterR had de- such a referral were not made, the evaluation clined, and the high rate of errors was causing would occur at this stage. The speech generat- him to avoid using his device despite cues. ing device would replace speech completely, This recent physical decline also limited his or nearly so, and intervention would focus participation in the bible study and coffee on identifying specific contexts in which the group, two community activities that he had device would be used, the primary commu- valued. nication partners, the cues/supports the in- Intervention focused on introducing him to dividual would need to effectively use the the use of a touch screen device (Indi3 by To- speech generating device, and backup sys- bii Dynavox with Communicator 54 software) tems to support ongoing communication in with access to both a keyboard for spelling all contexts. Backup systems could include techniques such as low tech communication displays with letters, words, and phrases and accessed through direct selection (e.g., point- 2 LightWriter R SL40 by Abilia Toby Churchill, Norman ing and eye gaze) or partner-assisted scanning. Way Industrial Estate, Over, Cambridge CB24 5QE, England, http://www.toby-churchill.com/products/light writer-sl40/ SUMMARY AND CONCLUSION 3Indi speech generating device by Tobii Dynavox, 2100 Wharton Street, Suite 400, Pittsburgh, PA 15203, https:// Targeting the participation level of www.tobiidynavox.com/en-US/products/devices/ the World Health Organization’s model of 4Communicator 5 communication software by Tobii Dy- navox, 2100 Wharton Street, Suite 400, Pittsburgh, PA functioning for individuals with motor speech 15203, https://www.tobiidynavox.com/en-US/products/ impairment provides speech-language pathol- software/ ogists, rehabilitation teams, individuals, and

their families with a path to identify effective conditions, supports grow and expand communication supports for them. For peo- as their needs change across stages from ple who are stable in their recovery, supports supplementation to complete replacement of must meet a wide range of needs and may natural speech. A combination of supports require modiﬁcation, as living situations or that either augment or replace spoken lan- new communication opportunities, contexts, guage and provide supplemental information and partners are encountered. For people for communication partners addresses the who are recovering, communication sup- goal of effective communication. As commu- ports are needed that can supplement natural nication partners share in the construction of speech initially but can be reduced over meaning during conversations, they may take time, as speech becomes more intelligible. In amoreactiveroletoguidethespeakertouse addition, supports may be limited to contexts established communication supports with a with unfamiliar communication partners. For focus on effective communication and active people who are experiencing degenerating participation.

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