INTRODUCTION Involving youth with severe communication disabilities in health research is foregro... more INTRODUCTION Involving youth with severe communication disabilities in health research is foregrounded in a perspective of rights and participation. Researchers aligned with a participatory and inclusive research agenda recommend that involving youth in health research should be a deliberate and well-planned process. However, limited examples exist of how researchers can facilitate the involvement of youth with severe communication disabilities in research projects. METHOD The aim of this paper was to describe the application of the Involvement Matrix as a conceptual framework to guide the three phases of a research project with youth with severe communication disabilities. RESULTS Six youth aged 19-34 years consented to be involved in the project. All youth had a severe communication disability and used augmentative and alternative communication (AAC) to support their involvement in the research project. The Involvement Matrix provided a structure to delineate four involvement roles in three research phases: In Phase 1, youth were listeners to research information and advisors in the needs analysis. In Phase 2, as advisors and decision-makers, youth provided their opinions on selecting picture communication symbols for health materials. In Phase 3, as partners, they were copresenters at an online youth forum. CONCLUSION The Involvement Matrix was used to plan and implement the involvement of youth with severe communication disabilities in codeveloping health materials for use during the COVID-19 pandemic. The Involvement Matrix can be applied together with AAC to enable meaningful involvement of youth in a health research project as listeners, advisors, decision-makers and partners. PATIENT OR PUBLIC CONTRIBUTION This study project was codeveloped with youth with severe communication disabilities who use AAC in South Africa. A person with lived experience was involved as an advisor to the health material development process and in the drafting of the manuscript.
Assessing students with moderate to severe disabilities, and especially those with little or no f... more Assessing students with moderate to severe disabilities, and especially those with little or no functional speech (LNFS), often necessitates accommodation of assessment material. These accommodations need to be equivalent to the original testing procedure. The aim of this study was to compare two different modes of response, one spoken and one using eye-gaze, to determine the influence of response mode on test results. A cross-over within-subject counterbalance design using multiple subjects was used 1 . Forty-eight typically developing Grade 1 children participated in the study. Participants were individually required to respond to 90 phonological awareness questions using either a spoken "Yes/No" response or a non-spoken "Yes/No" response by using eye-gaze. The response modes were controlled for order effect and analysed using ANOVA. No statistically significant difference was found between the two response modes.
It is imperative that individuals who experience Complex Communication Needs (CCN) develop sophis... more It is imperative that individuals who experience Complex Communication Needs (CCN) develop sophisticated literacy skills in order to maximize their participation with as wide a range of communication partners as possible. Without the requisite mature literacy abilities this cohort will be disadvantaged in that they will be unable to access the dedicated, sophisticated, high or low technological Augmentative and Alternative Communication (AAC) systems which are available to support the educational, vocational and social experiences throughout their lives. This means that they will neither be able to enrich their life experiences, nor develop their cognitive potential to the full. Furthermore, because of the often concomitant physical impairments, it means that jobs available are office based and require fair literacy skills. Reading is a complex process which places many cognitive demands on the reader. It is well documented that individuals with CCN who have sufficient intellectual ability and receptive language have greater difficulty than their typical peers in becoming literate. Yet, it is possible for individuals with CCN to master the code, despite the often irregularity of instruction as well as the fact that English orthography is variant and unpredictable. This paper introduces a reading approach developed for at-risk readers, including students using AAC strategies. The approach emphasizes language-rich experiences, aided language stimulation, and storyboards with AAC symbols. The program follows a constructivist approach to reading development, encouraging children to construct their own language using a core vocabulary of reading words. The approach follows a weekly reading routine, with specific language, reading, and writing activities completed throughout the school week. Details of the approach will be presented during the presentation via videotape with a variety of materials available for review. The approach is being implemented in several primary schools in South Africa.
Assessing students with moderate to severe disabilities, and especially those with little or no f... more Assessing students with moderate to severe disabilities, and especially those with little or no functional speech (LNFS), often necessitates accommodation of assessment material. These accommodations need to be equivalent to the original testing procedure. The aim of this study was to compare two different modes of response, one spoken and one using eye-gaze, to determine the influence of response mode on test results. A cross-over within-subject counterbalance design using multiple subjects was used 1. Forty-eight typically developing Grade 1 children participated in the study. Participants were individually required to respond to 90 phonological awareness questions using either a spoken "Yes/No" response or a non-spoken "Yes/No" response by using eye-gaze. The response modes were controlled for order effect and analysed using ANOVA. No statistically significant difference was found between the two response modes.
Assessing the abilities of learners with barriers to learning (BtL) is particularly difficult in ... more Assessing the abilities of learners with barriers to learning (BtL) is particularly difficult in the case of learners with severe physical difficulties or those who have little or no functional speech. We focus on the use of different types of assessment concessions as a basis for the development of more reliable assessments for those learners who are unable to participate in general assessment procedures. As the term assessment generally refers to a broad concept, including different types of evaluation procedures and strategies, we use the term assessment task in order to focus on a specific assessment tool as part of the process of providing access for learners with impairment to general assessment procedures. The requirements for different types of assessment concessions are contrasted, i.e. accommodations, adaptations, and modifications. A classification system for assessment concessions is critically discussed and strategies for further research are indicated.
INTRODUCTION Involving youth with severe communication disabilities in health research is foregro... more INTRODUCTION Involving youth with severe communication disabilities in health research is foregrounded in a perspective of rights and participation. Researchers aligned with a participatory and inclusive research agenda recommend that involving youth in health research should be a deliberate and well-planned process. However, limited examples exist of how researchers can facilitate the involvement of youth with severe communication disabilities in research projects. METHOD The aim of this paper was to describe the application of the Involvement Matrix as a conceptual framework to guide the three phases of a research project with youth with severe communication disabilities. RESULTS Six youth aged 19-34 years consented to be involved in the project. All youth had a severe communication disability and used augmentative and alternative communication (AAC) to support their involvement in the research project. The Involvement Matrix provided a structure to delineate four involvement roles in three research phases: In Phase 1, youth were listeners to research information and advisors in the needs analysis. In Phase 2, as advisors and decision-makers, youth provided their opinions on selecting picture communication symbols for health materials. In Phase 3, as partners, they were copresenters at an online youth forum. CONCLUSION The Involvement Matrix was used to plan and implement the involvement of youth with severe communication disabilities in codeveloping health materials for use during the COVID-19 pandemic. The Involvement Matrix can be applied together with AAC to enable meaningful involvement of youth in a health research project as listeners, advisors, decision-makers and partners. PATIENT OR PUBLIC CONTRIBUTION This study project was codeveloped with youth with severe communication disabilities who use AAC in South Africa. A person with lived experience was involved as an advisor to the health material development process and in the drafting of the manuscript.
Assessing students with moderate to severe disabilities, and especially those with little or no f... more Assessing students with moderate to severe disabilities, and especially those with little or no functional speech (LNFS), often necessitates accommodation of assessment material. These accommodations need to be equivalent to the original testing procedure. The aim of this study was to compare two different modes of response, one spoken and one using eye-gaze, to determine the influence of response mode on test results. A cross-over within-subject counterbalance design using multiple subjects was used 1 . Forty-eight typically developing Grade 1 children participated in the study. Participants were individually required to respond to 90 phonological awareness questions using either a spoken "Yes/No" response or a non-spoken "Yes/No" response by using eye-gaze. The response modes were controlled for order effect and analysed using ANOVA. No statistically significant difference was found between the two response modes.
It is imperative that individuals who experience Complex Communication Needs (CCN) develop sophis... more It is imperative that individuals who experience Complex Communication Needs (CCN) develop sophisticated literacy skills in order to maximize their participation with as wide a range of communication partners as possible. Without the requisite mature literacy abilities this cohort will be disadvantaged in that they will be unable to access the dedicated, sophisticated, high or low technological Augmentative and Alternative Communication (AAC) systems which are available to support the educational, vocational and social experiences throughout their lives. This means that they will neither be able to enrich their life experiences, nor develop their cognitive potential to the full. Furthermore, because of the often concomitant physical impairments, it means that jobs available are office based and require fair literacy skills. Reading is a complex process which places many cognitive demands on the reader. It is well documented that individuals with CCN who have sufficient intellectual ability and receptive language have greater difficulty than their typical peers in becoming literate. Yet, it is possible for individuals with CCN to master the code, despite the often irregularity of instruction as well as the fact that English orthography is variant and unpredictable. This paper introduces a reading approach developed for at-risk readers, including students using AAC strategies. The approach emphasizes language-rich experiences, aided language stimulation, and storyboards with AAC symbols. The program follows a constructivist approach to reading development, encouraging children to construct their own language using a core vocabulary of reading words. The approach follows a weekly reading routine, with specific language, reading, and writing activities completed throughout the school week. Details of the approach will be presented during the presentation via videotape with a variety of materials available for review. The approach is being implemented in several primary schools in South Africa.
Assessing students with moderate to severe disabilities, and especially those with little or no f... more Assessing students with moderate to severe disabilities, and especially those with little or no functional speech (LNFS), often necessitates accommodation of assessment material. These accommodations need to be equivalent to the original testing procedure. The aim of this study was to compare two different modes of response, one spoken and one using eye-gaze, to determine the influence of response mode on test results. A cross-over within-subject counterbalance design using multiple subjects was used 1. Forty-eight typically developing Grade 1 children participated in the study. Participants were individually required to respond to 90 phonological awareness questions using either a spoken "Yes/No" response or a non-spoken "Yes/No" response by using eye-gaze. The response modes were controlled for order effect and analysed using ANOVA. No statistically significant difference was found between the two response modes.
Assessing the abilities of learners with barriers to learning (BtL) is particularly difficult in ... more Assessing the abilities of learners with barriers to learning (BtL) is particularly difficult in the case of learners with severe physical difficulties or those who have little or no functional speech. We focus on the use of different types of assessment concessions as a basis for the development of more reliable assessments for those learners who are unable to participate in general assessment procedures. As the term assessment generally refers to a broad concept, including different types of evaluation procedures and strategies, we use the term assessment task in order to focus on a specific assessment tool as part of the process of providing access for learners with impairment to general assessment procedures. The requirements for different types of assessment concessions are contrasted, i.e. accommodations, adaptations, and modifications. A classification system for assessment concessions is critically discussed and strategies for further research are indicated.
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Papers by Maureen Casey