Speech-Generating Device Funding and Patterns of Acquisition for Persons With Amyotrophic Lateral Sclerosis

2015 ◽  
Vol 24 (4) ◽  
pp. 155-160
Author(s):  
Laura J. Ball ◽  
Gary L. Pattee ◽  
Lewis Golinker ◽  
David R. Beukelman
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Augmentative And Alternative Communication ◽  
Age Groups ◽  
Functional Communication ◽  
Alternative Communication ◽  
Work Related ◽  
Speech Generating Device ◽  
Communication Needs ◽  
Care Costs ◽  
Lateral Sclerosis

People with such severe and complex communication needs that they require speech-generating devices (SGDs) to meet daily communication needs come from all age groups and socioeconomic backgrounds (Beukelman & Mirenda, 2013). Among this group are people eligible for Medicare, which will provide payment for a percentage (typically 80 percent) of covered health care costs, including SGDs. Medicare eligibility extends to people age 65 and older and younger people who became disabled from non-work related causes. In this article, the authors first review Medicare coverage for augmentative and alternative communication (AAC) devices beginning in the 1980s and subsequently document the SGD acquisition and access of 64 people with amyotrophic lateral sclerosis (ALS) whose speech became so severely limited that they required an SGD to support functional communication.

“My World Has Expanded Even Though I'm Stuck at Home”: Experiences of Individuals With Amyotrophic Lateral Sclerosis Who Use Augmentative and Alternative Communication and Social Media

2015 ◽  
Vol 24 (4) ◽  
pp. 680-695 ◽  
Author(s):  
Jessica Caron ◽  
Janice Light
Keyword(s):  
Social Media ◽  
Amyotrophic Lateral Sclerosis ◽  
Augmentative And Alternative Communication ◽  
Future Research ◽  
Loss Of Function ◽  
Alternative Communication ◽  
Communication Modes ◽  
Communication Needs ◽  
Use Of Social Media ◽  
Lateral Sclerosis

PurposeThis study aimed to expand the current understanding of how persons with amyotrophic lateral sclerosis (pALS) use augmentative and alternative communication and social media to address their communication needs.MethodAn online focus group was used to investigate the experiences of 9 pALS who use augmentative and alternative communication and social media. Questions posed to the group related to (a) current use of social media, (b) advantages of social media, (c) barriers to independent use, (d) supports to independent use, and (e) recommendations for developers, policy makers, and other pALS.ResultsParticipants primarily reported that use of social media was a beneficial tool that provided increased communication opportunities, connections to communication partners, and networks of support. Specific results are discussed with reference to the research as well as implications for practice and recommendations for future research.ConclusionsAs individuals with ALS experience loss of function, some communication modes may no longer be viable. Providing access to different modes of communication, including social media, can allow independence, participation and better quality of life.

scholarly journals Comparing the Effects of Speech-Generating Device Display Organization on Symbol Comprehension and Use by Three Children With Developmental Delays

2017 ◽  
Vol 26 (2) ◽  
pp. 227-240 ◽  
Author(s):  
Andrea Barton-Hulsey ◽  
Jane Wegner ◽  
Nancy C. Brady ◽  
Betty H. Bunce ◽  
Rose A. Sevcik
Keyword(s):  
Augmentative And Alternative Communication ◽  
Visual Scene ◽  
Future Research ◽  
Functional Communication ◽  
Alternative Communication ◽  
Communication Assessment ◽  
Speech Generating Device ◽  
Symbol Comprehension ◽  
Communication Needs

Purpose Three children ages 3;6 to 5;3 with developmental and language delays were provided experience with a traditional grid-based display and a contextually organized visual scene display on a speech-generating device to illustrate considerations for practice and future research in augmentative and alternative communication assessment and intervention. Method Twelve symbols were taught in a grid display and visual scene display using aided input during dramatic play routines. Teaching sessions were 30 minutes a day, 5 days a week for 3 weeks. Symbol comprehension and use was assessed pre and post 3 weeks of experience. Results Comprehension of symbol vocabulary on both displays increased after 3 weeks of experience. Participants 1 and 2 used both displays largely for initiation. Participant 3 had limited expressive use of either display. Conclusions The methods used in this study demonstrate one way to inform individual differences in learning and preference for speech-generating device displays when making clinical decisions regarding augmentative and alternative communication supports for a child and their family. Future research should systematically examine the role of extant comprehension, symbol experience, functional communication needs, and the role of vocabulary type in the learning and use of grid displays versus visual scene displays.

“Augmentative and Alternative Communication (AAC) Will Give You a Voice”: Key Practices in AAC Assessment and Intervention as Described by Persons with Amyotrophic Lateral Sclerosis

2018 ◽  
Vol 39 (05) ◽  
pp. 399-415
Author(s):  
Felicia Giambalvo ◽  
Kim Kohler ◽  
Godfrey Nazareth ◽  
Jessica Caron ◽  
Susan Fager ◽  
...  
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Augmentative And Alternative Communication ◽  
Alternative Communication ◽  
Complex Communication Needs ◽  
Multiple Modalities ◽  
Intervention Process ◽  
Communication Needs ◽  
Communication Supports ◽  
Lateral Sclerosis

AbstractThe purpose of this study was to describe the perceptions of persons with amyotrophic lateral sclerosis (pALS) who use augmentative and alternative communication (AAC) with the AAC assessment and intervention process. Twenty-one pALS with complex communication needs participated in a multipart survey (and follow-up e-mails) to provide information on their experiences with AAC assessment and intervention. A majority of the participants agreed with the importance of three key AAC intervention principles: appropriate staging of the timing of assessment and intervention activities, inclusion of communication partners, and the use of multiple modalities and strategies as communication supports. Most participants reported that their assessment and intervention experiences included at least some aspect of these three key practices. The results of this study suggest that the identified best practices in AAC should be reviewed and implemented on an individualized basis for pALS with complex communication needs.

scholarly journals Communication Support for People with ALS

2011 ◽  
Vol 2011 ◽  
pp. 1-6 ◽  
Author(s):  
David Beukelman ◽  
Susan Fager ◽  
Amy Nordness
Keyword(s):  
Augmentative And Alternative Communication ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Alternative Communication ◽  
Motor Speech ◽  
Motor Speech Disorder ◽  
Speech Performance ◽  
Communication Needs ◽  
Almost All ◽  
Lateral Sclerosis

Almost all people with amyotrophic lateral sclerosis (ALS) experience a motor speech disorder, such as dysarthria, as the disease progresses. At some point, 80 to of people with ALS are unable to meet their daily communication needs using natural speech. Unfortunately, once intelligibility begins to decrease, speech performance often deteriorates so rapidly that there is little time to implement an appropriate augmentative and alternative communication (AAC) intervention; therefore, appropriate timing of referral for AAC assessment and intervention continues to be a most important clinical decision-making issue. AAC acceptance and use have increased considerably during the past decade. Many people use AAC until within a few weeks of their deaths.

Case Studies of Intermediate Steps/Between AAC Evaluations and Implementation

2008 ◽  
Vol 17 (4) ◽  
pp. 150-155 ◽  
Author(s):  
Sheela Stuart ◽  
Christopher Ritthaler
Keyword(s):  
Case Studies ◽  
Augmentative And Alternative Communication ◽  
Motor Planning ◽  
Second Opinion ◽  
Alternative Communication ◽  
Successful Communication ◽  
School Based ◽  
Speech Generating Device ◽  
Communication Needs ◽  
And Behavior

Abstract This article presents two case studies of children with complex communication needs, including a diagnosis of autism. Although different in age and overall diagnoses, both children primarily used behaviors, gestures, and limited overall vocalizations for communication. In each case, some pictures and signing had been intermittently incorporated into their school programs with very little success. The school-based augmentative and alternative communication (AAC) teams had used the candidacy model and decided that, until the children made gains in cognition and behavior, they could not use any type of speech generating device. In each instance, the child's parent disagreed and requested a second AAC evaluation. The second opinion evaluating center incorporated Language Acquisition Though Motor Planning (LAMP) to utilize a speech generating device for participation in some motivating activities. Results were sufficiently positive to support trial use of this approach and private outpatient sessions were provided. The article includes a brief overview of the resulting journey: the give-and-take process between second opinion center, parents, and school to arrive at a form of successful communication for each child.

Augmentative and Alternative Communication Assessment in Adults With Amyotrophic Lateral Sclerosis: Results of Semi-Structured Interviews

2021 ◽  
pp. 152574012110171
Author(s):  
Miechelle McKelvey ◽  
Kristy S. E. Weissling ◽  
Shelley K. Lund ◽  
Wendy Quach ◽  
Aimee Dietz
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Augmentative And Alternative Communication ◽  
Assessment Process ◽  
Speech Language Pathology ◽  
Alternative Communication ◽  
Structured Interviews ◽  
Communication Assessment ◽  
Language Pathology ◽  
Method Of Assessment ◽  
Lateral Sclerosis

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 (a) What areas are assessed by AAC specialists evaluating individuals with ALS and (b) 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.

Expanding Availability of Speech-Generating Device Evaluation and Treatment to People With Amyotrophic Lateral Sclerosis (pALS) Through Telepractice: Perspectives of pALS and Communication Partners

2021 ◽  
Vol 30 (5) ◽  
pp. 2098-2114
Author(s):  
Amy Roman ◽  
Carolyn Baylor ◽  
Lindsay Johnson ◽  
Maya Barton
Keyword(s):  
Augmentative And Alternative Communication ◽  
Qualitative Interviews ◽  
Alternative Communication ◽  
Speech Generating Device ◽  
Communication Partners ◽  
Assessment And Treatment ◽  
Mobility Impaired ◽  
Time And Energy ◽  
And Training ◽  
Lateral Sclerosis

Purpose To examine the experiences of people with ALS (pALS) and their communication partners (cALS) regarding receiving speech-generating device (SGD) evaluation and treatment via telepractice. Method Eight pALS along with a primary cALS participated in telepractice SGD evaluation and treatment with an augmentative and alternative communication (AAC) specialist and representatives from multiple SGD vendors. Participants were interviewed postevaluation and post-SGD training to examine their experiences. Mixed methods data were collected through Likert scale responses and qualitative interviews. Results Telepractice SGD evaluation and training were feasible and resulted in all pALS receiving SGDs they were able to use to communicate. In both Likert rating items and qualitative interviews, participants rated the telepractice experience very highly in terms of giving them access to AAC services via an AAC specialist that they would not have otherwise been able to access, and doing so in a format that was possible given their limitations in mobility, endurance, and caregiver availability. Suggestions for improving the telepractice experience were provided. Conclusions Telepractice should be considered as an option to provide vital SGD services to patients who are geographically remote, mobility impaired, unable to leave their home, experience fatigue with travel, or otherwise would not have access to these specialized services. Telepractice allows patients to preserve their time and energy for the assessment and treatment sessions, resulting in perhaps deeper and more frequent engagement in evaluation and training. Telepractice could serve as an alternative to outpatient, in-person evaluations, or be utilized in conjunction with in-person appointments. Supplemental Material https://doi.org/10.23641/asha.15094257

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