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Disabilities, Volume 3, Issue 4 (December 2023) – 17 articles

Cover Story (view full-size image): The impact of disability on people’s lives is often underestimated because the extra costs of living with a disability are unaccounted for. There are several different methodologies for estimating those costs, each with their own uses and limitations. For example, one approach is to measure what is currently being spent, while another is to estimate what would need to be spent for equal participation. This paper explores the relative advantages and disadvantages of these approaches and concludes with recommendations for which methodology fits which purpose, and how they can be used together to help design more inclusive social protection policies. View this paper
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13 pages, 935 KiB  
Article
Social Participation and Perceived Quality of Environment of Adults with Disabilities
by Alice Pellichero, Maud Nezan, Marie-Eve Lamontagne, François Routhier, Willy Allègre and Myriam Le Goff-Pronost
Disabilities 2023, 3(4), 680-692; https://doi.org/10.3390/disabilities3040044 - 18 Dec 2023
Viewed by 730
Abstract
Background: Social participation is a fundamental right; however, restrictions often arise due to environmental barriers, both physical and social. The ‘Handicap Innovation Territoire’ (HIT) project aims to enhance social participation for individuals with disabilities living in Brittany, France. To gain insight into [...] Read more.
Background: Social participation is a fundamental right; however, restrictions often arise due to environmental barriers, both physical and social. The ‘Handicap Innovation Territoire’ (HIT) project aims to enhance social participation for individuals with disabilities living in Brittany, France. To gain insight into the desired areas of intervention and evaluate the HIT project, an initial experiment was conducted to assess the level of social participation and perceived environmental quality among people with disabilities. Methods: A cross-sectional investigation was performed, utilizing the Assessment of Life Habits (LIFE-H) and Measure of the Quality of the Environment (MQE). Results: Twenty-five individuals with disabilities, with an average age of 46.0 ± 23.6 years, were recruited. The results indicated an overall high level of social participation, while work, education, and leisure showed participation restrictions. The MQE scores revealed variations in the environmental perception across disability groups concerning work environment (p = 0.035), stores and services (p = 0.014), health care services (p = 0.006), education (p = 0.043), access to radio and television (p = 0.002), road accessibility (p = 0.003), and time allowed for tasks (p = 0.001). Conclusion: The study identified factors that influence social participation among individuals with disabilities living in Brittany, and highlighted the actions implemented within the HIT project to address the challenges related to social participation. Full article
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14 pages, 248 KiB  
Article
Implementation of Universal Design for Learning in Low- and Middle-Income Countries: ‘I Thought These Principles Could Have Been Written by Me’
by Judith McKenzie, Amani Karisa and Callista Kahonde
Disabilities 2023, 3(4), 666-679; https://doi.org/10.3390/disabilities3040043 - 14 Dec 2023
Viewed by 922
Abstract
UNESCO’s Global Education Monitoring Report (2020) strongly recommends the adoption of Universal Design for Learning (UDL) at the government level so that it becomes an integral part of countries’ inclusive education policies. However, UDL has largely been developed in high-income countries with technology [...] Read more.
UNESCO’s Global Education Monitoring Report (2020) strongly recommends the adoption of Universal Design for Learning (UDL) at the government level so that it becomes an integral part of countries’ inclusive education policies. However, UDL has largely been developed in high-income countries with technology as a central theme. The question is whether the purported benefits of the UDL approach can translate into low and middle-income country (LMIC) contexts. This study explores the relevance and fit of UDL to LMIC contexts by use of interviews (either individual or group) with 12 representatives of international agencies, non-governmental organizations (NGOs), and UDL experts who have experience in providing inclusive education services in LMICs. Three themes are reported: understanding of UDL, UDL supporting inclusive education, and UDL in teacher-training initiatives and capacity building. The concept of UDL is not new in LMICs, although the name may be. The potential for UDL to support inclusive education in LMICs is recognized. UDL needs to be mainstreamed in teacher training programs, and its implementation should be adapted to respond to the contextual realities of LMICs. The encounter between UDL proponents from high-income countries and education stakeholders in LMICs should be mutually enriching rather than imposing the approach from high-income countries on those in LMICs. Full article
18 pages, 816 KiB  
Article
Disaster Preparedness, Capabilities, and Support Needs: The Lived Experience Perspectives of People with Disability
by Kuo-yi Jade Chang, Michelle Villeneuve, Tonia Crawford, Ivy Yen, Dale Dominey-Howes and Gwynnyth Llewellyn
Disabilities 2023, 3(4), 648-665; https://doi.org/10.3390/disabilities3040042 - 08 Dec 2023
Cited by 1 | Viewed by 1167
Abstract
People with disability face heightened vulnerability during disasters due to functional limitations and inadequate support. This study explores disaster preparedness, capabilities, and support needs among Australians with disability. A cross-sectional survey was conducted, aligned with the Person-Centred Emergency Preparedness (P-CEP) framework: a co-designed [...] Read more.
People with disability face heightened vulnerability during disasters due to functional limitations and inadequate support. This study explores disaster preparedness, capabilities, and support needs among Australians with disability. A cross-sectional survey was conducted, aligned with the Person-Centred Emergency Preparedness (P-CEP) framework: a co-designed and tested framework that helps people with disability assess their capabilities, identify their needs, communicate with others, and plan for different emergency scenarios. Data collection involved self-administered online surveys and interviewer-administered telephone surveys through convenience sampling. Descriptive statistics and regression modelling were employed for data analysis. Of the 138 respondents, most were female (68.1%) and aged 60–69 (23.9%). While 60.3% had emergency plans, motivators included enhancing survival chances (36.7%) and past disaster experiences (22.7%). Barriers included uncertainty about preparation (22.0%) and difficulty obtaining information (11.3%). Those perceiving bushfire risk were more likely to have a plan (p = 0.004), while individuals living alone were less likely (p = 0.019). Common preparedness actions included safely storing important documents (57.5%), but fewer had backup plans for support workers (9.2%) or home generators (9.7%). Respondents with disaster experience highlighted diverse support needs, encompassing health, emotional well-being, and practical assistance. Inclusive disaster risk reduction should involve individuals with disability in assessing their capabilities and support requirements. This study underscores the necessity of tailored emergency preparedness measures to safeguard the well-being of this demographic. Full article
(This article belongs to the Special Issue Advances in Disability-Inclusive Disaster Risk Reduction)
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9 pages, 588 KiB  
Article
The Silent Majority: Understanding and Supporting Access and Inclusion for People with Disabilities Living in Predominantly Low-Resource Communities
by James H. Rimmer, Phuong T. M. Quach, Stephanie Ward, Hui-Ju Young, Harshvardhan Singh and Byron Lai
Disabilities 2023, 3(4), 639-647; https://doi.org/10.3390/disabilities3040041 - 07 Dec 2023
Viewed by 1114
Abstract
People with disabilities are often isolated from their community due to issues with accessibility and inclusion, which are worse in low-resource communities. Creating meaningful change will require an understanding of strategies that work at a community-wide level to foster community engagement among people [...] Read more.
People with disabilities are often isolated from their community due to issues with accessibility and inclusion, which are worse in low-resource communities. Creating meaningful change will require an understanding of strategies that work at a community-wide level to foster community engagement among people with disabilities. This study utilized a qualitative grounded theory approach to identify barriers and facilitators of community access and inclusion of people with disabilities from the perspectives of 12 neighborhood presidents of low-resource areas within the state of Alabama in the United States. Four themes were identified: (1) community engagement is a process from accessibility to inclusion; (2) knowledge supports people’s needs and empowers systemic changes to policies and laws; (3) neighborhood resources beget further resources; and (4) change necessitates benevolent leadership. Based on these themes, we generated a substantive theory called the Neighborhood Engagement Theory, which health professionals can utilize to support neighborhood presidents in creating systemic change for people with disabilities. Full article
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18 pages, 2459 KiB  
Article
Multiple-Stakeholder Perspectives on Accessibility Data and the Use of Socio-Technical Tools to Improve Sidewalk Accessibility
by Delphine Labbé, Yochai Eisenberg, Devon Snyder, Judy Shanley, Joy M. Hammel and Jon E. Froehlich
Disabilities 2023, 3(4), 621-638; https://doi.org/10.3390/disabilities3040040 - 28 Nov 2023
Viewed by 927
Abstract
For people with disabilities, accessible pedestrian infrastructure can support independence, mobility, and improved quality of life. Yet, most pedestrian infrastructure presents barriers that impede movement. A major challenge for cities to improve pedestrian accessibility is the lack of reliable data on sidewalk accessibility. [...] Read more.
For people with disabilities, accessible pedestrian infrastructure can support independence, mobility, and improved quality of life. Yet, most pedestrian infrastructure presents barriers that impede movement. A major challenge for cities to improve pedestrian accessibility is the lack of reliable data on sidewalk accessibility. Little is known about the type of data needed for cities, as well as how different stakeholders perceive and use sidewalk data. Therefore, this study seeks to explore the perceptions of multiple stakeholders on the use, gathering, and application of sidewalk accessibility data. We conducted a series of workshops with 51 participants, including people with disabilities, caregivers, Americans with Disabilities Act (ADA) coordinators, and urban planners, to discuss sidewalk accessibility data and data collection tools. We used the socio-technological tool Project Sidewalk as an example. Participants identified various uses for the accessibility data such as route planning, barrier removal plans, and advocacy, and discussed issues of usability, trust, access, and accessibility of the data and tools. Our findings contribute to a better understanding of important factors that impact the use and application of accessibility data and how to implement accessibility data collection initiatives that utilize socio-technological approaches such as crowdsourcing. Full article
(This article belongs to the Special Issue Mobility, Access, and Participation for Disabled People)
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13 pages, 931 KiB  
Article
Identifying Facilitators and Barriers in Quebec Schools to Promote Inclusive Physical Education
by Margaux Hebinck, Maxence Boisvert, Mariève Labbé, Roxanne Périnet-Lacroix, Jérémie Brisebois, Krista L. Best and Maxime T. Robert
Disabilities 2023, 3(4), 608-620; https://doi.org/10.3390/disabilities3040039 - 22 Nov 2023
Viewed by 1697
Abstract
Inclusive physical education allows the development of social skills, attitudes, and awareness of peers about functional limitations and enhances the leadership skills of all children. However, the positive experience of children with functional limitations in inclusive physical education can be impacted by programs [...] Read more.
Inclusive physical education allows the development of social skills, attitudes, and awareness of peers about functional limitations and enhances the leadership skills of all children. However, the positive experience of children with functional limitations in inclusive physical education can be impacted by programs inadequate to their abilities and the limited training and knowledge of physical educators about teaching in consideration of their needs. The objective of this study was to identify the facilitators and barriers experienced by physical educators to include children with functional limitations in physical education in Quebec schools. A cross-sectional descriptive study with an online survey was conducted with physical education teachers and daycare educators. Descriptive statistics were used to analyze the data. A total of 149 participants (n = 130 physical education teachers) responded to the survey. Most respondents (79.5%) included children with functional limitations in activities with their classmates. However, 39.4% of respondents reported feeling not informed and not equipped to facilitate inclusion. This study identified the facilitators and barriers to physical education for children with functional limitations from the perspectives of physical educators, in Quebec schools, and the role of the latter to encourage inclusion. Full article
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17 pages, 265 KiB  
Case Report
A Collaborative Approach to Support Participation in Physical Recreation for Preschool Students with Multiple Disabilities: A Case Series
by Heather L. Brossman, Lisa A. Chiarello, Robert J. Palisano and Kimberly D. Wynarczuk
Disabilities 2023, 3(4), 591-607; https://doi.org/10.3390/disabilities3040038 - 17 Nov 2023
Viewed by 704
Abstract
Aims: To evaluate a collaborative participation-based therapy approach for two preschool students with multiple disabilities from the experience of Individualized Education Program (IEP) teams, highlighting the perspective of the physical therapist. Methods: The phases of collaborative participation-based therapy were implemented: (a) [...] Read more.
Aims: To evaluate a collaborative participation-based therapy approach for two preschool students with multiple disabilities from the experience of Individualized Education Program (IEP) teams, highlighting the perspective of the physical therapist. Methods: The phases of collaborative participation-based therapy were implemented: (a) collaborative relationships were developed and supported within the IEP teams, (b) collaborative meaningful physical recreation goals were developed for participation at school, (c) strengths and needs assessments using the “Collaborative Process for Action Plans to Achieve Participation Goals” were conducted with IEP teams, (d) participation-based interventions were provided, and (e) goal achievement and processes were evaluated. The use of technology for collaboration was encouraged. The physical therapist kept intervention logs and wrote reflective journal entries. Interventions adhered to COVID-19 regulations. Goal achievement was measured using Goal Attainment Scaling. IEP team members completed questionnaires on their experiences. Results: One student met their goal expectation, and one student exceeded their goal expectation. The students were engaged, and IEP team members’ experiences were positive. Conclusions: The use of participation-based therapy is meaningful, feasible, and acceptable to IEP teams. Team collaboration and flexibility were instrumental to successful implementation. Strategies to promote effective communication and the use of technology would support a participation-based therapy approach. Full article
12 pages, 267 KiB  
Viewpoint
Retirement and People with Intellectual Disability in the Australian Context
by Roger J. Stancliffe, Michelle Brotherton, Kate O’Loughlin and Nathan J. Wilson
Disabilities 2023, 3(4), 579-590; https://doi.org/10.3390/disabilities3040037 - 16 Nov 2023
Viewed by 726
Abstract
This paper examines retirement by older workers with intellectual disability. Much research and intervention about retirement and intellectual disability in the last decade or so emanates from Australia, although there are some current cross-sectional and descriptive studies from other developed countries. The Australian [...] Read more.
This paper examines retirement by older workers with intellectual disability. Much research and intervention about retirement and intellectual disability in the last decade or so emanates from Australia, although there are some current cross-sectional and descriptive studies from other developed countries. The Australian literature stands out as the forerunner in the development and controlled evaluation of interventions to support the process of preparing for, practising, and then experiencing retirement. Therefore, this paper begins by briefly describing retirement-related aspects of employment for people with intellectual disability in Australia. Next, we present a critical summary of Australian research on the retirement of people with intellectual disability, supported by a briefer analysis of international literature. Then, key issues, such as financial factors, age of retirement, the time course of retirement (sudden or gradual), and self-determination regarding the decision to retire, are explored. Finally, to help guide future research and policy, we identify a number of retirement-related research questions that are currently under-researched or unexamined. Full article
(This article belongs to the Special Issue Aging with Disability)
17 pages, 808 KiB  
Review
The Intersectionality of Gender, Sexual Identity, and Disability in Disaster Risk Reduction in OECD Countries: A Rapid Scoping Review
by Tonia Crawford, Kuo-yi Jade Chang, Farhana Nila, Parvathi Subramaniam, Loriana Bethune, Debra Parkinson and Michelle Villeneuve
Disabilities 2023, 3(4), 562-578; https://doi.org/10.3390/disabilities3040036 - 09 Nov 2023
Viewed by 1675
Abstract
People with disability are disproportionally affected by disasters due to layers of marginalisation from an interaction of personal, social, economic, political, and environmental factors. These intersect with gender, gender identity, and sexual orientation, and result in additional discrimination and social exclusion that reinforce [...] Read more.
People with disability are disproportionally affected by disasters due to layers of marginalisation from an interaction of personal, social, economic, political, and environmental factors. These intersect with gender, gender identity, and sexual orientation, and result in additional discrimination and social exclusion that reinforce inequality and stigma. There has been little focus on the intersection of disability and gender in disability-inclusive disaster risk reduction (DIDRR) in high-income countries. This paper reports on a scoping review exploring the intersection of gender and sexual identity and disability in disaster in both peer-reviewed and grey literature. Building greater awareness of the specific needs of marginalised groups such as women, gender, and sexually diverse people into DIDRR will reduce the disproportionate impacts of disaster on these groups. Full article
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12 pages, 274 KiB  
Article
Experiences of Domestic Violence and Disability
by Gayle Brewer and Calanthe Hendrikse
Disabilities 2023, 3(4), 550-561; https://doi.org/10.3390/disabilities3040035 - 08 Nov 2023
Viewed by 1196
Abstract
Disabled people are at increased risk of violence, including physical, psychological, sexual, and financial abuse. We conducted a thematic analysis of discussion forum posts (N = 50) from the popular online platform, Reddit. Posts discussed personal experiences of domestic violence, most commonly [...] Read more.
Disabled people are at increased risk of violence, including physical, psychological, sexual, and financial abuse. We conducted a thematic analysis of discussion forum posts (N = 50) from the popular online platform, Reddit. Posts discussed personal experiences of domestic violence, most commonly referring to partner violence (n = 23) or abuse perpetrated by a parent (n = 16). We identified three primary themes associated with domestic violence: (i) Perpetrators Targeting Disability (e.g., withdrawing access to medication or assistive devices and verbal abuse focused on the disability), (ii) Isolation and Dependence (e.g., financial dependence on the perpetrator), and (iii) Accessibility of Support (e.g., inaccessibility of domestic violence shelters and bureaucracy of the benefits system). Findings highlight the relationship between disability and domestic violence. Greater societal recognition of this issue is required, and systems must be put into place to ensure that disabled victim-survivors of domestic violence can access the health and personal care required. Full article
11 pages, 250 KiB  
Article
Methods for Estimating the Impact of Disability Costs for Designing Inclusive Policies
by Daniel Mont, Lena Morgon Banks, Ludovico Carraro, Alex Cote, Jill Hanass-Hancock, Sophie Mitra, Zachary Morris, Mercoledi Nasiir and Monica Pinilla-Roncancio
Disabilities 2023, 3(4), 539-549; https://doi.org/10.3390/disabilities3040034 - 07 Nov 2023
Viewed by 1785
Abstract
The impact of disability on people’s lives is often underestimated because the extra costs of living with a disability are not accounted for. This paper analyzes several different methodologies for estimating those costs and explores their usefulness in designing inclusive social policies. For [...] Read more.
The impact of disability on people’s lives is often underestimated because the extra costs of living with a disability are not accounted for. This paper analyzes several different methodologies for estimating those costs and explores their usefulness in designing inclusive social policies. For example, one approach is to measure what is currently being spent, while another is to estimate what would need to be spent for equal participation. These can be measured using statistical techniques or through a more qualitative methodology. Each of these methods has its advantages and disadvantages. The paper concludes with recommendations for which methodology fits which purpose, and how they can be used together to obtain a full accounting of the extra costs incurred by people with disabilities. Full article
14 pages, 2004 KiB  
Review
Re-Imagining Education for All Children
by Roy McConkey and Judith McKenzie
Disabilities 2023, 3(4), 525-538; https://doi.org/10.3390/disabilities3040033 - 31 Oct 2023
Viewed by 765
Abstract
Universal education is an elusive goal in many countries, especially for disabled children. Nonetheless, determined efforts around the globe have shown that it can become a reality once existing systems were re-imagined by practitioners who arguably have been to the fore more so [...] Read more.
Universal education is an elusive goal in many countries, especially for disabled children. Nonetheless, determined efforts around the globe have shown that it can become a reality once existing systems were re-imagined by practitioners who arguably have been to the fore more so than academic researchers. Their efforts have identified new ways of thinking about children’s disabilities, the introduction of new practices in schools, forging partnerships between teachers and parents and mobilising community resources. Societal change is both a consequence of and a support to these local systems. The complexity of creating education for all may be daunting, but it is achievable when driven by committed, creative and inspirational leadership from practitioners, as is evident from the examples provided in this paper, which were further validated by research and evaluation into their efforts. Full article
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18 pages, 3346 KiB  
Case Report
Power Mobility, Supported Standing and Stepping Device Use in the First Two Years of Life: A Case Report of Twins Functioning at GMFCS V
by Roslyn W. Livingstone, Angela J. Chin and Ginny S. Paleg
Disabilities 2023, 3(4), 507-524; https://doi.org/10.3390/disabilities3040032 - 31 Oct 2023
Viewed by 1309
Abstract
Mobility experience has a positive impact on activity, participation, socialisation, language and cognition, but children with cerebral palsy (CP), Gross Motor Function Classification System (GMFCS) level V require assistive devices or assistance in all environments. Supported standing devices afford upright, weight-bearing positions to [...] Read more.
Mobility experience has a positive impact on activity, participation, socialisation, language and cognition, but children with cerebral palsy (CP), Gross Motor Function Classification System (GMFCS) level V require assistive devices or assistance in all environments. Supported standing devices afford upright, weight-bearing positions to promote muscle, bone, joint and overall health. Supported stepping devices afford stepping and upright independent mobility, positively impacting self-esteem and participation, while power mobility is the only possibility for effective, independent community mobility. These devices and opportunities should be introduced at the age when children who are typically developing are pulling to stand, moving and exploring their environment. A detailed case description including lived experience and device use data is presented for female twins with dystonic tetraplegic CP born at 25 weeks gestational age and functioning at GMFCS level V. The feasibility of using power mobility, standing and stepping devices in home and community settings within the first two years is illustrated. The twins transitioned from spending 24 h in lying positions or being held in arms to spending more than 2 h daily in upright positions and having opportunities to move independently. Positioning and mobility devices can help to address all the F-words for child development: functioning, family, fitness, fun, friends and future. Full article
(This article belongs to the Special Issue Mobility, Access, and Participation for Disabled People)
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14 pages, 325 KiB  
Article
Exploring Knowledge of the Concept of Physical Literacy among Rehabilitation Professionals, Students and Coaches Practicing in a Pediatric Setting
by Margaux Hebinck, Roxanne Pelletier, Mariève Labbé, Krista L. Best and Maxime T. Robert
Disabilities 2023, 3(4), 493-506; https://doi.org/10.3390/disabilities3040031 - 20 Oct 2023
Viewed by 1467
Abstract
Approximately 22% of Canadian children with physical disabilities meet the daily physical activity recommendations. Physical activity is attributed to physical literacy, a conceptualization of the domains required to be physically active throughout life. In Canada, pediatric rehabilitation professionals’ and coaches’ roles are essential [...] Read more.
Approximately 22% of Canadian children with physical disabilities meet the daily physical activity recommendations. Physical activity is attributed to physical literacy, a conceptualization of the domains required to be physically active throughout life. In Canada, pediatric rehabilitation professionals’ and coaches’ roles are essential for developing physical literacy. The aim of the study was to explore knowledge of physical literacy and strategies for developing physical literacy for children with physical disabilities among pediatric rehabilitation professionals, students, and coaches in Quebec. Semi-structured interviews were conducted with pediatric rehabilitation professionals, students and coaches and thematically analyzed using NVivo. Twenty professionals and students reported having variable knowledge about physical literacy, but suggested that adaptation, play and interdisciplinarity were essential in the development of physical literacy for children with physical disabilities. Participants highlighted the need to redefine fundamental movement skills for children with physical disabilities. Despite perceiving varied knowledge of the physical literacy concept, pediatric rehabilitation professionals and coaches described essential domains to foster physical literacy in children with disabilities. Pediatric rehabilitation professionals and coaches play a vital role in fostering physical literacy. Therefore, it is essential to support the development of knowledge that may support professionals, such as through training programs and continuing education. Full article
(This article belongs to the Special Issue Mobility, Access, and Participation for Disabled People)
16 pages, 280 KiB  
Article
Assessing the Tool-Use Learning Process in Persons with Profound Intellectual and Multiple Disabilities
by Christina Modh, Ann-Marie Öhrvall and Lisbeth Nilsson
Disabilities 2023, 3(4), 477-492; https://doi.org/10.3390/disabilities3040030 - 18 Oct 2023
Viewed by 1205
Abstract
The aim of the study was to explore inter-rater reliability and rater experiences of applying the universal instrument Assessment of Learning Process (ALP) with persons with profound intellectual and multiple disabilities. The study used a mixed-methods design. Inter-rater reliability was tested by eight [...] Read more.
The aim of the study was to explore inter-rater reliability and rater experiences of applying the universal instrument Assessment of Learning Process (ALP) with persons with profound intellectual and multiple disabilities. The study used a mixed-methods design. Inter-rater reliability was tested by eight clinical raters who assessed 23 video clips of people learning to use a powered AKKA mobility platform with a line-follower system. The raters were four occupational therapists, two special education teachers, and two speech-language therapists. The qualitative Think-aloud method explored three of the raters experiences of applying the ALP instrument. The inter-rater reliability test of the universal ALP instrument showed a moderate linear weighted kappa value (0.45). All eight raters’ estimated the degree of difficulty or confidence for each assessment. Content analysis of Think-aloud data elucidated three of the raters experiences of observing performance characteristics and interpreting tool-use understanding. The reported inter-rater reliability of the universal ALP instrument can be considered acceptable for an observational study involving persons with profound intellectual and multiple disabilities. Thereby, the results suggest that the ALP can be applied to this population. This is important as assessing a person’s phase in the learning process guides the choice of ALP-facilitating strategies supporting progress in tool-use learning, which in turn may expand a person’s activity repertoire and participation. Full article
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22 pages, 549 KiB  
Article
Exploring the Quality of Life of People with Incomplete Spinal Cord Injury Who Can Ambulate
by Murveena Jeawon, Bethany Hase, Susanna Miller, Janice Eng, Andrea Bundon, Habib Chaudhury, Jocelyn Maffin, Ryan Clarkson, Jenna Wright and W. Ben Mortenson
Disabilities 2023, 3(4), 455-476; https://doi.org/10.3390/disabilities3040029 - 06 Oct 2023
Viewed by 1112
Abstract
(1) Purpose: To examine associations between subjective quality of life and other socio-demographic variables and to explore differences in experiences of people with different levels of quality of life (low, moderate, high). (2) Materials and methods: Semi-structured interviews and standardized measures of mobility, [...] Read more.
(1) Purpose: To examine associations between subjective quality of life and other socio-demographic variables and to explore differences in experiences of people with different levels of quality of life (low, moderate, high). (2) Materials and methods: Semi-structured interviews and standardized measures of mobility, function, health-related quality-of-life, and quality-of-life were used to collect the data for this mixed-method study. (3) Results: Twenty-four participants were interviewed with an average age of 55 years and 54% were male. High quality of life, according to quantitative analysis, was strongly associated with being male, attending rehabilitation, and being married. The qualitative findings supported the quantitative findings and also revealed that people with a low quality of life felt the neighborhood-built environment was not supportive of people with incomplete spinal cord injury who can walk. Participants who reported a low/moderate quality of life reported feeling devalued by able-bodied people and that their mobility was getting worse over time. (4) Conclusion: Findings suggest that those with incomplete spinal cord injuries who can walk could benefit from improved quality of life by modifying their social support and neighborhood’s built environment. For instance, sensitivity training for the general population could help to reduce negative attitudes and misperceptions about invisible impairments and promote inclusion. Full article
(This article belongs to the Special Issue Mobility, Access, and Participation for Disabled People)
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29 pages, 1858 KiB  
Article
Metalinguistic Awareness as Self-Management in People with Apraxia of Speech and Aphasia: Lived Experience from a Longitudinal Case Series
by Katharyn Mumby
Disabilities 2023, 3(4), 426-454; https://doi.org/10.3390/disabilities3040028 - 28 Sep 2023
Viewed by 979
Abstract
People with acquired apraxia of speech (AOS) and aphasia commonly experience long-term communication disability without support for their ongoing recovery or self-management. Little is known about their lived experience of metalinguistic abilities and capacity to harness them for self-management of speech production. The [...] Read more.
People with acquired apraxia of speech (AOS) and aphasia commonly experience long-term communication disability without support for their ongoing recovery or self-management. Little is known about their lived experience of metalinguistic abilities and capacity to harness them for self-management of speech production. The author, a speech and language therapist (SLT), revisited her previous qualitative study after her own more recent lived experience of recovering from mild aphasia. Participant perspectives were explored from a longitudinal case series (eleven people with confirmed AOS and aphasia discharged from SLT), with full ethical approval. The anonymized data comprised detailed transcripts from videoed semi-structured interviews, participant assessments, field notes and reflections, member checking, and reflexivity. The original systematic thematic analysis of these data in NVivo software was re-interrogated by the author, deriving three overarching themes: Metalinguistic awareness of spoken communication breakdown, Self-management, and Therapeutic assessment. The participants conveyed the nature, occurrence, context, mechanism, and purpose underlying errors in spoken communication (themes of What, When, Where, How and Why). They generated compensatory strategies, elucidated via subthemes with quotations, verified contemporaneously by an original participant volunteer. The findings support the value of metalinguistic co-construction during in-depth assessments of communication disability, offering fresh avenues for long-term self-management in aphasia and AOS. Full article
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