Ethical integration of voice cloning into AAC for people living with ALS: a living guiding-principles framework

Introduction: Patients with amyotrophic lateral sclerosis (ALS) often require augmentative and alternative communication (AAC) to support impaired communication. We evaluated the effectiveness of an e-learning program for healthcare students on communication support for patients with ALS, which was adapted from a previous face-to-face program. Methods: The program included an 85-min preparatory session, 165-min AAC practice session, and 40-min review session. Fifty-five healthcare students completed the program with pre-/post-tests, AAC practices using a transparent communication board (Flick), Kuchimoji, the communication device, subjective burden based on the visual analog scale (VAS), and free-response comments. The participants completed the practice twice over a 6-month interval. Data were analyzed using the Wilcoxon signed-rank sum and chi-square tests. Results: The program was effective in improving knowledge and AAC skills, similar to the face-to-face version. The pre-/post-test scores significantly increased for beginners (from 70 to 80, P<.001) and experienced participants (from 75 to 80, P<.001). However, after 6 months, a significant decrease in the pre-/post-test scores was observed (from 80 to 75, P=.017). In AAC practice, the number of letters transmitted in 5 min significantly increased for Flick (beginner: 27, experienced: 30, P<.001) and Kuchimoji (beginner: 21, experienced: 24, P<.001), with a reduction in subjective burden according to the VAS ratio. Text mining revealed a high frequency of positive sentences in participants’ feedback regarding communication devices. Conclusions: The e-learning program effectively improved ALS communication support knowledge and skills, with a lower perceived burden than face-to-face training.

Augmentative and alternative communication (AAC) is used to support individuals with communication impairments, such as those with amyotrophic lateral sclerosis (ALS). The selection of AAC for patients with ALS involves a variety of factors, sometimes leading to the utilization of multiple AAC methods. This study aimed to survey patients with ALS in Japan, focusing on objectives: to describe the actual state of AAC usage among these patients and to investigate potential classifications in their choice of communication methods, along with identifying influential latent factors. Data from 102 patients with ALS were analysed using descriptive statistics and latent class analysis. A latent class analysis revealed four distinct classifications: class I, replacing unaid communication with AAC (n = 46, 45.1%); class II, with minimal AAC use (n = 24, 23.5%); class III, centred around no-tech/low-tech AAC (n = 17, 16.7%); and class IV combining unaid communication with various AACs (n = 15, 14.7%). These classifications were influenced by age at diagnosis, TPPV use, gastrostomy use, and the Revised ALS Functional Rating Scale. The characteristics of each class revealed a correlation between increased medical needs, such as bulbar palsy, motor and respiratory function decline, and the necessity for AAC. Notably, patients diagnosed at an older age and those with severe bulbar palsy, like those seen in bulbar-onset ALS, require early communication support due to early onset of communication impairments. Additionally, introducing AAC in the early stages of ALS suggests that learning diverse communication methods can contribute to the maintenance of communication.

A Partnership for Communication: A Personal Journey Through Amyotrophic Lateral Sclerosis

People with amyotrophic lateral sclerosis (ALS) often experience changes to their speech, and may use augmentative and alternative communication (AAC) devices and techniques to maintain the ability to communicate. The use of AAC may facilitate the participation of people with ALS in various life situations involving communication. There is limited data in the literature about the AAC approaches currently used by people with ALS, the professional services they receive to support communication, or the effects of AAC on their communicative participation. This dissertation involved a nationwide online survey of people with ALS, and comprises three papers intended to add to the knowledge base about AAC and other communication-related topics in this population. The first provides a snapshot of current trends in AAC use and service delivery experiences among people with ALS, with survey results presented using descriptive statistics and data visualization. The second describes survey respondents' self-ratings of communicative participation, and explores the effects of AAC use on those ratings. The third presents exploratory data analysis conducted on survey results, with a focus on personal, environmental, and other factors that may influence communication outcomes, and on suggested topics for future research. Results highlight the diverse experiences, needs, challenges, and successes of individuals navigating living with ALS and changing communication abilities.

Purpose The objective of this study was to explore and describe current trends in the augmentative and alternative communication (AAC) use and service delivery experiences of people with amyotrophic lateral sclerosis (PALS) in the U.S. Methods Cross-sectional data were collected from 216 PALS via an anonymous online questionnaire in 2021. Results Over 70% of participants reported at least some detectable speech disturbance, and approximately half used aided communication during face-to-face interactions. Among respondents with severe speech impairment, over 90% reported using speech-generating devices, and just over half reported using low-tech AAC. Most participants had met with an SLP to discuss speech and communication, but varied in both timing of the initial intervention and frequency of ongoing intervention. Fewer than half reported that their family members or other important people had received education or support related to communication for PALS. Participants also shared their use of and experiences with telephone and video calls, access methods, mounting systems, word prediction and stored phrases, and message and voice banking. Conclusions Results highlight the importance of early referral for AAC intervention, ongoing re-evaluation and treatment, involvement of communication partners and support for multimodal communication and adaptation to changing needs.

The purpose of this study was to explore what speech-language pathologists (SLPs) who are AAC specialists see as advantages and disadvantages of providing AAC services via telehealth, how well tele-AAC assessments align with guidelines for in-person assessments, and how SLPs’ perspectives of tele-AAC services changed post-COVID. Fifteen SLPs who are AAC specialists and experienced working with people with amyotrophic lateral sclerosis watched videos of speech generating device (SGD) assessments conducted via telehealth for eight people with amyotrophic lateral sclerosis. Using a checklist based on the AAC Clinical Assessment Project (AAC-CAP), the SLPs rated how comparable remote assessment was to in-person assessment, and described advantages and challenges. Across checklist elements, most participants rated AAC assessment via telemedicine as “same/comparable” to in-person assessment. The most common advantages of tele-AAC assessment were that tele-AAC was more functional, increased care partner availability, and increased clients’ comfort at home. The most common challenges were technical difficulties and a limited comprehensive assessment due to the remote modality. Tele-AAC should be considered a viable assessment option as it may increase equitable access to care for more people with amyotrophic lateral sclerosis. Tools such as the AAC-CAP may help generalist SLPs increase their comfort and proficiency providing AAC services.

Introduction: Amyotrophic Lateral Sclerosis (ALS) is a neurodegenerative disease that in its evolution affects the occupational performance of the person. This may require the use of different assistive technology in order to improve the communication possibilities and, by extension, personal autonomy. Objective: to identify the perspective of people with ALS in relation to the influence of communication processes in their occupations and to explore possible Augmentative and Alternative Communication (AAC) in the occupational therapy intervention process. Methods: A descriptive and observational quantitative study of a series of cases with a transversal temporal perspective. The ALS-FRS-R, ACIS, ATD PA and PIADS instruments have been used. The sample consisted of 10 people with ALS. Results: The level to which the person normally incorporates the device into his life does not depend on the functional health situation derived from ALS. The AAC that has had the greatest impact on the participants has been the APP voice assistant. An informative guide on AAC has been developed for people with ALS and families. Conclusions: The functions of the occupational therapist in the intervention with support products for communication (assessment, planning, intervention and monitoring) are transcendental for the promotion of personal autonomy of people with ALS because thanks to the incorporation of the communication device they can continue to develop, participate and make their own decisions in freedom.

This phenomenological qualitative study explored how eight speech-language pathology specialists in augmentative and alternative communication (AAC) (who self-identified as adult-focused) would approach the AAC assessment process when presented with a case study of an adult with amyotrophic lateral sclerosis (ALS). The general research questions were: What areas are assessed by AAC specialists evaluating individuals with ALS? How do specialists evaluate the areas identified: In all, four themes emerged: (a) Area of Assessment, (b) Method of Assessment, (c) Patient Education, and (d) Decision Criteria. These results support authoritative models of AAC assessment. AAC assessment is a complex task and understanding the behaviors of specialists, as outlined in this article, may be a first step in assisting general practice SLPs to complete AAC assessments for individuals with ALS with greater confidence and comfort.

The majority of individuals with amyotrophic lateral sclerosis (ALS) benefit from augmentative and alternative communication (AAC) at some point during the disease process. Different AAC approaches are used, depending on functional status, communication purposes, familiarity of the communication partner, and the environment. Early, middle, and late stages of AAC intervention have been identified and reflect changes in an individual's functional status and subsequent changes in communication needs. Trends in the use of low- and high-technology AAC systems appear to correspond to these stages. In this article, case studies are used to demonstrate how individuals tend to rely on both unaided and low-technology AAC methods during the early stages of ALS, on high-technology systems during the middle stages of the disease, and again on unaided and low-technology AAC methods during the late stages of ALS.

Objective: This tutorial paper is to explore the novel nature of communicative competence in augmentative and alternative communication (AAC) practice by comparing it to communicative competence in naturally verbal dyadic communication. Patients and Methods: This paper first reviews the four domains of communicative competence in AAC practice. Second, it examines competence in dyadic communications between naturally verbal people without disabilities, deriving new insights and using these to analyze the evolution of communicative competence in AAC practice. Results: Communicative competence in AAC practice should be reconceptualized from a new perspective as dyadic, learned, co-constructed, and of relative value, ascertained through performance. Conclusion: In the past decades, the study of communicative competence in AAC practice has primarily focused on individual persons who use AAC. However, the conceptualization of communicative competence should shift away from an individualized construct toward a dyadic construct. This leads to a discussion of potential implications and future research directions. This paper might offer AAC researchers and practitioners an opportunity to deepen their understanding of communicative competence and promote more positive outcomes for people who use AAC.

Background: Amyotrophic lateral sclerosis (ALS) progressively impairs motor function, compromising speech and limiting communication. Augmentative and alternative communication (AAC) is essential to maintain autonomy, social participation, and quality of life for people with ALS (PALS). This review maps technological developments in AAC, from low-tech tools to advanced brain–computer interface (BCI) systems. Methods: We conducted a scoping review following the PRISMA extension for scoping reviews. PubMed, Web of Science, SciELO, MEDLINE, and CINAHL were screened for studies published up to 31 August 2025. Peer-reviewed RCT, cohort, cross-sectional, and conference papers were included. Single-case studies of invasive BCI technology for ALS were also considered. Methodological quality was evaluated using JBI Critical Appraisal Tools. Results: Thirty-seven studies met inclusion criteria. High-tech AAC—particularly eye-tracking systems and non-invasive BCIs—were most frequently studied. Eye tracking showed high usability but was limited by fatigue, calibration demands, and ocular impairments. EMG- and EOG-based systems demonstrated promising accuracy and resilience to environmental factors, though evidence remains limited. Invasive BCIs showed the highest performance in late-stage ALS and locked-in syndrome, but with small samples and uncertain long-term feasibility. No studies focused exclusively on low-tech AAC interventions. Conclusions: AAC technologies, especially BCIs, EMG and eye-tracking systems, show promise in supporting autonomy in PALS. Implementation gaps persist, including limited attention to caregiver burden, healthcare provider training, and the real-world use of low-tech and hybrid AAC. Further research is needed to ensure that communication solutions are timely, accessible, and effective, and that they are tailored to functional status, daily needs, social participation, and interaction with the environment.

Augmentative and Alternative Communication (AAC) refers to all forms of communication that can be used to support people with little or no functional speech. The present study was part of a broader European project that aimed at gathering information about the service provision in AAC in the Basque Autonomous Community, Spain. One hundred and fifty-three professionals in special education completed an electronically distributed questionnaire comprising 19 questions that were divided into three sections: background information, participants’ AAC practices, and AAC specific training. The findings from the analysis revealed that most of the participants have used systems of AAC at some point in their professional lives. Some participants reported not using AAC systems due to a lack of knowledge, but most of them specified that they did not stop using them once they had started. We found that participants rely on a variety of AAC systems with the most used being communicative apps and software, along with printed communication tables and self-created instruments. Data suggest that professionals use low-tech self-created materials, and this may be related to the fact even though most of the participants received some type of short training they reported that it was insufficient.

Objectives: In this study, it is aimed to reveal what extent speech and language therapists (SLT) working in Turkey used augmentative and alternative communication (AAC) systems in their working area. For this purpose, it was investigated how they perceive AAC in terms of its scope and role; ACC applications within the scope of interventions for communication, language and speech disorders; best practice insights on AAC; what factors are seen as facilitating or limiting the implementation of AAC within the scope of intervention and suggestions for providing the best practice for AAC. Methods: Phenomenology, one of the qualitative research methods, was used in the study. The subject of the study is the opinions of SLTs working in Turkey on their clinical practices and thoughts on the use of AAC. The study group consists of 15 SLTs from Turkey and determined by using maximum diversity sampling method. The semi-structured interview forms were used in which SLTs’ views, suggestions and expectations about AAC applications in the service delivery as a data collection tool. The obstacles and difficulties in these applications were discussed. Content analysis was used and also carried out using the qualitative data analysis program MAXQDA 2018. In order to ensure the consistency of the data analysis, the data were analyzed by another field expert and the 92% consensus was tried to be reached by using the consistency formula. Results: Participant opinions consist of benefiting status from AAC, opinions on the importance of AAC, preferred case groups and reasons for AAC implementation, opinions on current best practice understanding on communication and language intervention/use of AAC, opinions on current working conditions on AAC practices, opinions on the limitations of the use of AAC in communication and language intervention and recommendations for ensuring effective use of AAC themes. Conclusions: The results of the study show that supporting individuals who can benefit from AAC in the context of intervention services for communication disorders requires great effort. In addition, SLTs stated that they strongly believed in AAC and its potential value for individuals with communication disorders, but did not have sufficient self-confidence about their current or developing skills in this area. It is also seen that clinicians need training and support from employers, professional or government agencies that set policies and standards to achieve their AAC related goals.

ABSTRACTWe report on how functional capacity of communication and the use of augmentative and alternative communication (AAC) technology changed in persons with amyotrophic lateral sclerosis (ALS) and progressive dysarthria during a period of two years. The initial sample comprised 30 participants, nine of them survived the whole two years. The data was gathered in 157 communication assessments by a speech-language pathologist. Functional capacity of communication was evaluated with combined severity scales of speech and upper and lower limb function. Communication strategies used were gathered based on the participants’ own reports, and their use was confirmed during the clinical visits. A total of 57% of the participants either supported or substituted their natural speech with high- or low- technology strategies. The majority of them reported that they used high-technology rather than low-technology AAC as the main communication means after speech had deteriorated. The classification of functional capacity of communication changed in 63% of participants, more in bulbar than spinal-onset ALS as the disease progressed. Natural speech is a strong means of communication and not effortlessly replaceable. However, AAC means, such as handwriting, text-to-speech devices and computer-based devices, are essential for persons with ALS as their speech deteriorates. Several AAC strategies to augment deteriorated speech and replace natural speech are often needed. Functional capacity of communication and its individual changes along the disease progression must be taken into account during the continuing communication aid processes.

Background and aims: Adults with acquired neurological disorders (stroke, Traumatic Brain Injury ...) develop their verbal communication and literacy capabilities as typical speakers and writers. They use these skills to participate academically, vocationally, recreationally, and socially. Depending upon their neurological condition, they gradually or suddenly lose their speech or language capabilities and are required to rely on Augmentative and Alternative Communication (AAC) systems to meet their communication needs. In addition to the loss of their spoken communication, the impact of their neurological condition on their participation patterns is potentially profound with reduced ability to care for themselves, a reduction or loss of employment, and usually a sudden or gradual restriction of their social networks. AAC is an umbrella term that encompasses the communication methods used to supplement or replace speech or writing for those with impairments in the production or comprehension of spoken or written language. During the past five decades, AAC technologies have been developed to compensate for these natural communication losses. Stroke is one of the main causes of disability in the world. About 20% of stroke patients experience aphasia, with 20-30% of these individuals exhibiting severe communication deficits for at least a portion of their recovery period. Augmentative and Alternative Communication (AAC) encompasses the communication methods used to supplement or replace speech or writing for those with impairments in the production of spoken or written language. Specifically designed Human Computer Interfaces (HCI), as an assistive technology, provides new channels of communication for patients with aphasia, dysarthria, and dyspraxia, when accompanied by movement impairments. In this workshop after stating a science review of the following types of issues: AAC acceptance (individually, culturally); AAC availability; AAC use patterns; AAC limitations are main issues, an AAC technology for post-stroke patients will be presented which developed by a knowledgebase company in Iran. The system allows patients with communication and motor impairment to state their intentions and feelings by a minimum movement in their body, or just by moving their eyes. Different sensors and switches are available to adopt based on the limited ability of the patients. For detecting eye movements, a novel wearable miniaturized system has been developed that is worn as a headband and detects eye movements based on processing electro-oculogram. A high performance graphical user interface has been developed to type letters and numbers in Persian language. The system also provides words prediction, text to speech conversion with natural voice, and sending/receiving messages in the mobile networks for a convenient communication experience. The developed system has been tested successfully by more than 20 patients with different disabilities, and is now commercially available.The proposed system can also help the severely disabled people with amyotrophic lateral sclerosis, quadriplegia, muscular dystrophy or cerebral palsy to communicate with others and mention their intentions, needs and feelings. This low-cost wearable device assures high level of comfort for the user without fatigue and do not need long time training. The system can also be adapted for the patients who can speak, but could not move their hands, to work with the computer and enjoy using the internet.