Occupational Therapy contribution on functional communication with High Tech Augmentativ-Alternativ Communication - Speech Generative Device (AAC-SGD) : a pilot-project in Oradea (Romania)
Authors: Mirela-Carmen Burllău, Occupational Therapist, Physical Therapist, Romania
Dr. Sara Nase Villareal, Occupational Therapist; Germany
Abstract: The article describes in term of process the first project in Romania trying to introduce High Tech AAC Speech Generating Device (SGD) – Direct Touch with iPad into the Occupational Therapy practice for supporting functional communication in children with disabilities experiencing speech-language delay with their families and local community.
Key-words: speech-language delay, augmentative-alternative communication, speech generating device, occupational therapy, AAC access, emerging practice, interdisciplinary.
Local context of Occupational Therapy practice
Occupational therapists in Oradea, Romania often provide intervention services for children with a variety of diagnoses. Diagnoses include neuro-developmental disorders (e.g., autism spectrum disorder, attention deficit/hyperactivity disorder, intellectual disability), neuro-motor disorders (e.g., cerebral palsy, spinal muscular atrophy, muscular dystrophy), and genetic disorders (e.g., Down syndrome, Angelman syndrome, Cri-du-chat syndrome). Between 2015 and 2018 parents of children with a disorder who were referred to occupational therapy often requested intervention services to address difficulties with eating and feeding, mobility, education and school. Occasionally, parents would express concerns with their child’s ability to play and socially interact with peers. Since 2020, more and more parents of children with genetic disorders and neuro-developmental disorders reported that their main concern was related to their child’s ability to navigate and maneuver within their environment (e.g., balancing, walking with or without support), and/or to communicate with parents, peers, teachers, and/or providers.
On the other hand, in my current clinical experience, some of the children with speech-language delay have been referred to the Occupational Therapy by a speech therapist, psychologist or a teacher in special education in order to address the underlying sensory-motor issues. The majority of these professionals are using mostly Picture Exchange Communication System/PECS, some Treatment and Education of Autistic and Related Communication Handicapped Children/TEACCH and/or Applied Behavior Analysis/ABA as strategies for improving communication skills.
Because the ability to communicate with others of these children remains dependent on communication-book (needs to be carried from one place to another, it's heavy, difficulties in transition from one environment to another one), therefore becomes evident to me the need to expand my clinical perspective (knowledge and skills) on supporting functional communication beyond addressing just the "difficulties in feeding activity, … having similar motor control problems in the production of sounds and speech". (Morris & Dunn Klein, 2000; LeBarton & Landa, 2019).
So, I contacted Sara Villarreal, an OT living in Germany with expertise in assessing access to technology for communication with individuals with severe speech impairment(s), to partner and consult with to support 4 non-verbal children (between ages 3 to 6 years) with neuro-developmental and/or genetic disorders. With more than 20 years experience as an occupational therapist, she is an advocate for individuals with complex communication impairments. She also has extensive experience feature-matching hardware and software to individual abilities in order to facilitate successful AAC communication with others which, in turn, improves their social engagement, autonomy, and quality of life.
After months of preparation and discussions, we managed to gather 24 people from the local Oradea community for a week-long opportunity to attend presentations and session consultations between 3 - 7 July 2023. The participants included parents, children, psychologists, speech therapists, teachers in special education, doctors in rehabilitation, occupational therapists, a social worker, and a physical therapist. They were interested in the elements of AAC topics related to accessibility, assessment, demonstration and implementation at home/school during ADLs, play and social engagement.
Assessing access to High Tech Augmentative - Alternative Communication - Speech Generative Device (AAC - SGD) & AAC Oradea Project
Augmentative and alternative communication (AAC) „Is an area of clinical practice that supplements or compensates for impairments in speech-language production and/or comprehension” (American Speech-Language-Hearing Association, n.d.). The AAC spectrum includes no tech (e.g., gestures, finger spelling), low tech (e.g., line drawings, objects, picture communication boards, letter boards), mid tech (e.g.,single button voice output, GoTalk simple overlay), and high tech (e.g., speech generating device with dynamic page-sets).
The effectiveness of using available technology within the local area for communication is dependent on 1) availability of augmentative and alternative communication (AAC) technology; 2) assessing and feature matching hardware/software and client’s abilities to efficiently access AAC; 3) provider/ community training and education; and 4) client-centered intervention and ongoing support.
In order to initiate foundational knowledge of augmentative and alternative communication (AAC) using high tech speech generating devices, Dr. Villarreal, OTR/L developed an educational series to introduce foundational knowledge for interested community providers, parents, and caregivers. Providers who attended this initial educational series included professionals form the education, human health, social and information technology fields. This introductory series, “Elements of AAC”, was broken up into 4 topics which were addressed during a mixture of formal presentations and individual family consultations: 1) Introduction to High Tech AAC SGD; 2) Assessing Access and Trial Period; 3) Introduce available AAC iPad Apps and Explore; and 4) Strategies for Implementation at Home, School, and within Community.
Element 1: Introduction to High Tech AAC Speech Generating Devices (SGD)
Children with complex communication needs benefit from a multi-modal approach to communication which allows them to “switch between modes depending on the partner, the context, and the purpose of the communication” (Buekelman & Light, 2020). The purpose of this introductory presentation is to build foundational knowledge of the spectrum of AAC, from no-tech to high-tech, and the benefits of using each approach to facilitate communication during children’s daily routines, play, and social engagement. High tech AAC speech generating devices (SGD) are dynamic systems with a display and voice output when symbols/pictures are selected. Voice output SGDs are evolving alongside advancing technology and apps which are becoming more readily available across platforms (e.g., dedicated SGDs, iPads, tablets).
Element 2: Assessing Access and Trial Period
Assessing access requires an evaluation of a child’s expressive and receptive communication, fine and gross motor, vision, and literacy skills require a trans-/interdisciplinary approach from the expertise of a speech-language therapist, occupational therapist, physical therapist, medical professionals (e.g., pediatrician, ophthalmologist, etc.), and/or educational teachers familiar with the child. The AAC assessment is to “determine the system component that will optimize communication for the user” (American Speech-Language-Hearing Association/ASHA, 2023) and is a continuous process during the trial period of interventions. A comprehensive assessment of AAC addresses 1) impairment in body structure and function; 2) comorbid deficits (e.g., apraxia, autism spectrum disorder, intellectual disability); 3) contextual factors (e.g., barriers); and 4) quality of life due to the impact of communication impairments and possible functional limitations which is inline with the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) framework (ASHA, 2023; © WHO, 2014).
After determining the child’s current level of performance, including strengths, weaknesses, and needs, AAC specialists then determine the appropriate AAC system as part of the feature-matching assessment. According to ASHA the feature matching assessment includes the following: input type (e.g., direct vs. indirect selection); output (e.g., type of speech, voice; portability; the capability to allow for a range of communication functions; capacity for use in varying environments with different partners; options for physical positioning and need for accessories (e.g., mounts or switches); the capability to be modified to allow for changes in communication abilities and needs; AAC user preferences; building motivation and meaning to use, and affordability and ease of maintenance.
Element 3: Introduce Available AAC iPad Apps and Explore
As we explore contextual factors for individuals with complex communication in Oradea, Romania, we have identified significant community barriers which impact access to high tech AAC speech generating devices. Barriers include limited Romanian and Hungarian voice output and language page sets. This requires each symbol to be edited with either language and new page sets to be created which can take a significant amount of time for a provider or parents/caregivers. Four AAC apps for iPad were explored: 1) TD Snap; 2) PRC LAMP; 3) GoTalk Now; and 4) Avaz. Each AAC app had strengths and weaknesses which were considered when choosing to initiate a trial period for communication with children with complex communication impairments. After trialing and exploring, the four families opted to continue using the TD Snap which offered robust dynamic communication page sets and was easily editable to meet each child’s needs for individualized customized page sets.
Element 4: Strategies for Implementation at Home, School, and within Community
Due to a high rate of abandonment of devices, it is important for children and family members to have meaningful interactions while using the device. This requires guidance from providers with knowledge of AAC SGD to strengthen meaningful interactions and engagement while using the Access Learning Process (ALP) for AAC. The ALP for AAC is a tool that breaks down the learning process into three stages with eight phases of competence, from novice to expert, to encourage progression with his or her communication device:
- Stage 1: Introvert / Exploring functions - “Focus is on body & access method. SGD focus = early exposure to access method, games & participation”
- Stage 2: Difficult Transition / Exploring Sequencing - “Focus is on body, access method & communication. SGD focus = intro to language/communication”
- Stage 3: Extrovert / Exploring Performance - “Focus is on body, access method, communication & environment. SGD focus = improved use of language and system”. (Nilsson, 2017)
Parent's perspective after 2 month of exposure to AAC-SDG
"There are a few months since C. started his AAC journey, first with PECS and now using TDSnap. As a typical Angelman, C. enjoys exploring everything with his mouth, therefore the printable pictures were not the best option for us as they were broken extremely fast. Since moving to a high tech AAC device, we notice a big change in C.'s ability to discriminate pictures.Most of the time (in the situation where he is very motivated by an item/activity) he needs minimum to no help with showing his option on iPad. At the moment, after approx. 6 weeks of using TDSnap, C. is able to discriminate most of the pictures that he usually goes for (food, favourite toys/ item, actions like "more or help me"). While we are still at the start of our journey; still learning how to use and adapt the device and the app to his developmental level, we are very happy on how the use of the app helps our child express himself. We are confident that with practice he will make even more use of the app and will improve his communication skills.”
"L. seems to be more interested to use TDSnap at home when she wants something, being able to navigate between Core words and My things and saying "I want to sing with Elsa" or "I want to grandma's". L. is trained in PECS, having it on the iPad but she is not interested in using it at home, at kindergarten or other group activities. On the other hand, as parents we need training and constant counseling/ mentoring with a lot of practice in understanding and using that system in the benefit of our child. It might be an additional, alternative system."
Occupational Therapist's perspective after 2 weeks ( twice a week for 30 min.) of exposure to AAC-SDG
"I want to sing with Coco-melon!" was a surprising sentence made spontaneously by L. (6 y.o., PECS trained), using the TDSnap from the iPad, just after 2 weeks of exposure to it. " I want hammock" or "I like/ More swing” is C. asking by using his iPad.
Speech Therapist's perspective
"I’m using and teaching PECS and I never thought to introduce to C. the concept of Go, Stop, More (while swinging in a hammock, a favorite activity chosen by C. using gestures) in that phase of teaching communication with picture exchange! I’m interested to work together with the Occupational Therapist in understanding and adding that system to my/our practice."
CONCLUSION
Initiating and engaging in a conversation by using communication technology and tools involves partnering between families and an interdisciplinary team which may include professionals from human health, education, social assistance and science and technology. This interdisciplinary partnership connects and integrates the need to solve the complexity of communication (WHO_ICF, version for Children and Youth, 2012). Occupational Therapists value the client's perspective to optimize intervention outcomes and often seek out ways to engage with them. As our understanding about the AAC spectrum increases between low-tech to high-tech, our ability to offer opportunities to improve access to available technology in order to make new connections of engagement. The next steps for our Oradea AAC Project will include building community resources, developing an AAC SGD library to allow clients to trial technology, continuing “Elements of AAC” education and training series while building partnerships, and advocating for AAC apps to include Romanian and Hungarian language page sets.
References
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Contact correspondence information:
Mirela Burllău, Oradea, Romania [email protected]
Sara Nase Villarreal, Gymnasiumstrasse 9, Amberg, Germany [email protected]