Disabilities

Radical transformation of Ireland’s special education system has occurred over the past three decades. National and international policy and legislative drivers for a more inclusive approach to education have resulted in greater levels of mainstreaming, with one exception. Provision for autistic children is increasingly provided through special classes: discrete classes attached to mainstream schools. This paper presents findings from a qualitative exploration of the benefits and challenges attributed to autism class provision in mainstream primary schools in Ireland, from the perspective of teachers and school principals. The findings reveal a role for autism special class teachers that is multi-faceted, rewarding, challenging, and directly related to the extent to which the special class is systematically included with whole school policy and practice. The significance of leadership and collaboration in promoting inclusive approaches to autism class provision features strongly in the findings and influences schools’ willingness to establish special classes. Micro-exclusion emerged as a theme and is linked to school culture and ethos. Findings contribute unique perspectives of school personnel, and recommendations create awareness of the benefits and challenges associated with autism special class provision and inform future innovation at a time when inclusive policy agendas and practices relating to autism provision arguably contradict each other. Full article

Persons with spinal cord injury (SCI) rely significantly on the use of assistive devices (ADs) to increase independence and enhance participation. This study aimed to determine the most important ADs for persons with SCI living in Switzerland and to identify design features of potentially novel ADs greatly facilitating persons with SCI in performing the tasks of daily life. Descriptive statistics were used to analyze cross-sectional data (N = 1294 participants) from the Swiss Spinal Cord Injury Cohort Study 2017. Open-ended questions regarding the importance of ADs and desirable novel ADs were manually coded and assigned to categories. The results showed that the most important ADs for persons with SCI were a manual wheelchair (61%), an adapted car (46%), and a wheelchair tractor (20%). The importance of ADs varied with gender, age, and SCI severity. While none of the participants indicated a desire for a completely novel AD, over one-fifth described specific design features of novel ADs or adaptions of existing ADs, which were most often related to facilitating transfer (12%), walking support (10%), and facilitating access (9%). These findings have implications for the design and development of ADs to better meet the needs of persons with SCI, improve their quality of life, and promote their independence and participation in daily activities. Full article

Introduction: Rehabilitation practices that adopt a strengths-based perspective are known as transdisciplinary evidence-based practices. However, little is known about whether and how such a perspective is experienced by people living with a neurological condition during their rehabilitation. Objective: To explore how core components of a strengths-based rehabilitation perspective (i.e., hope, self-determination, and mobilization of personal strengths) are envisioned and experienced in outpatient-based rehabilitation by adults living with multiple sclerosis or spinal cord injury. Methods: A descriptive exploratory study with mixed data collection was conducted with adults living with spinal cord injury (n = 9) or multiple sclerosis (n = 11). Participants completed two semi-structured interviews and the Recovery Promoting Relationship Scale (RPRS). The qualitative analysis relied on a hybrid inductive and deductive approach. Results: Four themes depict a strengths-based rehabilitation perspective: (1) The mobilization of personal strengths (e.g., what a strengths-based perspective could offer); (2) hope (e.g., what hinders hope in rehabilitation); (3) accessing information for decision-making (e.g., navigating the system); and (4) exercising self-determination (e.g., influencing the length or intensity of rehabilitation services). Conclusions: Hope, self-determination, and the mobilization of personal strengths are of the utmost importance throughout the rehabilitation of adults living with multiple sclerosis and or spinal cord injury. This paper raises awareness about elements specific to the contexts in which services are offered or to the therapeutic relationships influencing how these three strength-based constructs are envisioned and experienced in rehabilitation. Full article

Article 30 (5a) of the UNCRPD states that participation in mainstream sport should be a right for all individuals. However, many disabled people still face barriers to participation, and provision remains segregated and/or determined, at least in part, by the nature and degree of impairment. This paper explores the Mixed Ability (MA) model as an innovative approach to facilitating disabled people’s participation in, and engagement with, mainstream sport. It outlines findings from an evaluation of the Sport England-funded Mixed Ability Sport Development Programme, which saw the MA model trialed in a variety of sports. A participatory research design was employed to generate data with key stakeholder groups involved in the design and delivery of programme activities, as well as with MA participants. Analysis of the data identified three core themes: (i) defining MA sport; (ii) the impacts of MA sport; and (iii) challenges and enablers of MA sport. In discussing these, it is argued that the MA model can be a powerful approach to inclusion and help to shape meaningful change. Indeed, the data suggest that the impacts of MA activities can extend beyond the individual level and influence shifts in both sports club culture and wider perceptions around disability. The paper closes by considering the implications of the research and outlines recommendations for future practice in this area. Full article

While there are many benefits to healthy nutrition, adults with intellectual and developmental disabilities often have poor nutrition habits. Identifying effective practices to promote healthy nutrition for individuals with intellectual and developmental disabilities is critical. The purpose of this study was to examine the use of a health app and self-management intervention in supporting adults with intellectual and developmental disabilities in making healthier nutrition choices. A changing criterion single-case research design was used with three adults with intellectual and developmental disabilities to determine if there was a functional relation between a health app and self-management intervention, and the number of healthy food and drink items purchased when grocery shopping. The combination of the health app with self-management intervention was effective in increasing the number of healthy food and drink items two participants bought at the grocery store. Participants reported that they enjoyed using the app, scanning food and drink items was fun, and the goal-setting and self-monitoring components were easy to understand. Implications for practice and future research are discussed. Full article

This study investigated the experiences of people with disabilities during the first year of the COVID-19 pandemic. Four semi-structured qualitative interviews were conducted individually with 13 participants between May 2020 and February 2021. The data were thematically analyzed. Three themes were identified: (1) “Being an active agent in changing how things are done in the face of COVID restrictions”, revealed changes that participants made to their daily routines resulting from government-imposed and self-imposed restrictions; (2) “Pandemic restrictions wreak havoc”, explained participants challenges with adapting to the restrictions; and (3) “Trying to be resilient in the face of pandemic changes” described participants’ efforts to cope with life during the pandemic. The findings illustrate how life changed for people with disabilities during the pandemic. Participants reported specific types of challenges at each time point. As the vaccine rollout became more imminent, participants expressed more hope for the future and getting back to normal. Full article

Continuity of care is considered a key metric of quality healthcare. Yet, continuity of care in adults aging with congenital disability and the factors that contribute to care continuity are largely unknown. Using data from a national private administrative health claims database in the United States (2007–2018). we examined continuity of care in 8596 adults (mean age 48.6 years) with cerebral palsy or spina bifida. Logistic regression models analyzed how proximity to health care facilities, availability of care providers, and community socioeconomic context were associated with more continuous care. We found that adults aging with cerebral palsy or spina bifida saw a variety of different physician specialty types and generally had discontinuous care. Individuals who lived in areas with more hospitals and residential care facilities received more continuous care than those with limited access to these resources. Residence in more affluent areas was associated with receiving more fragmented care. Findings suggest that over and above individual factors, community healthcare resources and socioeconomic context serve as important factors to consider in understanding continuity of care patterns in adults aging with cerebral palsy or spina bifida. Full article

Background: Participation is often defined as taking part and being included in different areas of life. Leisure represents an important area of life for all people. People with disabilities have the right to experience leisure time in a self-determined manner. They have the right to participate in leisure activities on an equal basis with others. Due to various influencing factors, people with intellectual disabilities, especially those with severe to profound intellectual disabilities, are at risk of decreased participation. This is alarming because participation in leisure activities reflects quality of life. Purpose: The present study aims to review the empirical findings on leisure participation and its influencing factors in people with mild to moderate disabilities as compared to people with severe to profound intellectual disabilities. Method: A scoping review following the PRISMA-ScR checklist by Cochrane and the Joanna Briggs Institute (JBI) was conducted to examine research studies published in peer-reviewed journals between 2000 and 2022. The studies that were included relate to activities within the everyday leisure time of people with intellectual disabilities, regardless of age, gender, or severity of their cognitive disability. The categories of vacation and tourism were excluded so as to focus on everyday leisure. The sample was screened by two reviewers independently. In total, 27 articles met the inclusion criteria, with 21 articles referring to people with a mild to moderate intellectual disability and only six articles referring to people with a severe to profound intellectual disability. The evidence was summarized with a predefined standardized charting form, which was used by the two reviewers. Results: The results show that participation in leisure activities by people with intellectual disabilities can be limited, especially for those with severe to profound intellectual disabilities. This contradicts the guiding principle and human rights of inclusion and self-determination. Their participation in leisure time is extremely dependent on external factors, such as support people, leisure time availability, and form of living. Passive activities at home are often provided for people with severe to profound intellectual disabilities in particular; therefore, the need for interactive and self-determined leisure opportunities in the community is enormous. Various factors influencing leisure participation can be identified. Implications: The findings of this scoping review can be used to consider intervention, support, and barriers to enhancing leisure participation among people with disabilities as an important area of life. Full article

Older adults with cognitive impairment are at high risk of experiencing falls. Although no specific fall prevention guidelines presently exist for this population, exercise programmes to prevent falls are recommended. Limited literature exploring what older adults with mild to moderate cognitive impairment think about or how they make sense of the need for such programmes exists. This study explored the perspectives of older adults with mild to moderate cognitive impairment and their caregivers about exercise and physical activity in the context of fall prevention. Underpinned by Interpretive Phenomenological Analysis, qualitative semi-structured interviews were undertaken with nine community-dwelling adults (>65 years) with mild to moderate cognitive impairment and their caregivers (N = 6). Three themes of acceptance, denial, and accommodation were identified. The fluctuating concept of ‘self’ appeared to influence individual decisions to exercise or be physically active and what sort of physical activity to undertake more than any practical barriers. We suggest that healthcare professionals emphasise the concept of personhood, listening to and reinforcing biographic narratives of older adults living with cognitive impairment to foster a sense of autonomy, and shared decision-making while emphasising fall prevention activities that older adults with cognitive impairment might like to engage with. Full article

Background: The number of autistic individuals attending university and entering the workforce is growing, but there is a persistent employment gap. Higher education careers services offer students help to secure employment post-graduation. This research sought to identify barriers to and facilitators of success with regards to career advisors’ practice in helping autistic students prepare for job interviews and secure employment. Methods: A mixed-methods participatory research design incorporating surveys, co-creation workshops, and interviews with stakeholders was employed. Results: Quantitative results showed differences in what advisors and students/graduates viewed as the biggest barriers to employment, with students/graduates rating stress and professional qualifications significantly higher and advisors rating interacting with clients/customers significantly higher. Gender differences were also found. Qualitative results revealed the biggest barriers to be inflexible employers, interview stress, diagnostic disclosure, and confidence; facilitators included an individual focus, clear communication, strengths-based approach leading to self-insight, and mock interviews. Conclusions: Practices identified for better serving autistic students included discussing disclosure options, building confidence, reducing stress through a strengths-based approach, and mock interviews, following up to identify autism-friendly employers, focusing on the individual rather than the diagnosis, and communicating clearly with students/graduates. Full article

In recent decades, there has been considerable discussion surrounding what it means to age successfully, and what supports, services, and programs are needed to facilitate successful aging. Rehabilitation scholars advocate for models of successful aging that take into account the unique needs and priorities of those aging with long-term physical disability. The aim of this study is to explore how organizations that serve those with physical disability define successful aging for this population, and whether their understanding of successful aging is consistent with the needs and priorities identified by those aging with physical disability. To do so, we analyze qualitative data from a national online survey of disability organizations (N = 106 organizations). Organizations described the following domains of successful aging for those with physical disability: (a) autonomy and/or maximized independence; (b) living arrangement; (c) health and well-being; and (d) social connection and meaningful community engagement. Overall, organizations’ understandings of successful aging are consistent with the priorities identified by those aging with long-term physical disability. We discuss strategies that organizations can adopt to ensure that the programs and services that they offer facilitate these elements of successful aging. Full article

Background: COVID-19 restrictions in Ireland varied in levels of severity throughout 2020 and 2021. The aim of the present study was to explore the experiences of professional and family carers in supporting people with intellectual disabilities to make their own decisions during these restrictions. Methods: Participants recruited between July and December 2021 via social media, disability services, and academic experts completed a qualitative online survey. Results were analysed using reflexive thematic analysis. Results: Data from 16 participants (eight professional carers, eight family carers) were included. Three main themes were identified: 1. centring the person, 2. adapting to COVID, and 3. restricted lives. Anxiety, confusion, and boredom among adults with intellectual disabilities during restrictions were reported by both professional and familial carers. Professional carers reported some positive outcomes, including greater chances for independence among service users and new activities becoming available via online resources. Family carers reported more negative outcomes, including isolation from disability services. Conclusions: People with intellectual disabilities had their choices markedly curtailed during the restrictions. Future studies should focus on improving the ability of services to reach users who may not have the ability to attend services in person. Full article

Contemporary estimates of the association between functional impairment and health costs among United States (US) older adults who documented having pain are unavailable. We used a retrospective database design and developed unadjusted and adjusted linear regression models to assess total, office, outpatient, emergency department, inpatient, and prescribed drug costs between older US adults with and without functional impairment. We included US adults aged ≥ 50 in the 2020 Medical Expenditure Panel Survey dataset who documented having pain in the past month. We also included only those who had positive health costs. Among the 40,092,210 US adults aged ≥ 50 who documented having pain in the past month, we found 37% had functional impairment. In adjusted linear regression models, we found adults with functional impairment (versus adults without functional impairment) had 57.2% higher total health costs and 54.1% higher prescribed drug costs. We did not observe any statistical differences between groups for office, outpatient, emergency department, or inpatient costs. In conclusion, the higher total and prescribed drug costs we found among US older adults with pain and a functional impairment draws attention to the financial burden of functional impairment among these individuals, which needs to be addressed. Full article

Individuals with cerebral palsy functioning at Gross Motor Function Classification System (GMFCS) levels IV and V are unable to use hand-held walkers and require supported-stepping devices with trunk and pelvic support to allow overground stepping in natural environments. This scoping review explored what is known about the use of supported-stepping devices with individuals functioning at GMFCS IV or V. Comprehensive database and hand searches were completed in December 2022. Of 225 unique citations, 68 met the inclusion criteria: 10 syntheses and 58 primary studies including randomized, non-randomized, qualitative, observational and case study designs. Primary studies included 705 unique individuals functioning at GMFCS IV or V, aged 9 months to 47.7 years, while surveys and qualitative studies included 632 therapists. No new experimental studies have been published since previous reviews, however, lived experience and descriptive data suggest that upright positioning and mobility in supported-stepping devices have psycho-social significance with positive impacts on individual self-esteem and autonomy, as well as influencing the perception of others. Improved head and trunk control, use of hands, stepping and independent mobility may promote fitness, functioning, fun, friends, family and future, although environmental and physical challenges may limit use in adolescence and adulthood. Further research on all aspects of supported-stepping device use with individuals at GMFCS IV/V is warranted. Full article

Less than 7% of published works are accessible. To overcome this book famine, the Marrakesh Treaty was enacted with the view of enhancing access to published works for people with visual impairments, blind people, and people that are otherwise print-disabled. Leveraging survey data from six European countries (Italy, Ireland, Sweden, Germany, Hungary, and the Netherlands), we investigate the respondents’ knowledge of the Marrakesh Treaty and whether they experienced improved access to printed material after its implementation. The results of the survey show that people who are blind and use braille printers are more likely to report an improvement in accessing printed material, suggesting that the exceptions provided for in the Marrakesh Treaty best support the reproduction and availability of copyrighted works in braille rather than other formats. Full article

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) establishes that people with disabilities shall enjoy their human rights on an equal basis with others. Those rights include the right to legal capacity and to protection against discrimination, including intersectional and multiple forms of discrimination on the basis of disability and gender. In an effort to support the realisation of the CRPD, the United Nations team in Serbia undertook a project to address the implementation of these rights under the UN Partnership on the Rights of Persons with Disabilities (UNPRPD) programme. Namely, by bringing together stakeholders from the UN, government and civil society, the UNPRPD project in Serbia sought to create structural changes to uphold the rights of people with disabilities. With a view of understanding the process of change within, rather than the outcomes of, this UPRPD project, twenty-eight semi-structured interviews were conducted using the Most Significant Change Technique (MSCT) with key stakeholders involved in such a project. The interviews were analysed using Interpretive Phenomenological Analysis (IPA) to preserve the unique and diverse perspectives of participants who had differing roles across the project. The analysis allowed us to identify a number of facets of the process that facilitate structural change: coalition-building events; strengthening stakeholder capacity and relationships; the participation of persons with disabilities; and innovation in terms of what made the project significant, novel and in itself a change. All these facets are discussed in this article, with the purpose of supporting global efforts in alignment with the CRPD. On the whole, this article aims to support a better understanding of disability-inclusive development projects in line with the CRPD and to give evidence on how countries may begin to tackle the structural exclusion of persons with disabilities in society. Full article

It is often challenging for youth with disabilities to access university education in Africa, and for those who manage to make it to university, while there, their experiences are still not barrier-free. The purpose of this study was to uncover the experiences of the barriers and facilitators to inclusion for youth with disabilities in universities in South Africa, Ghana and Ethiopia. This qualitative project applied a critical, participatory research approach to exploring youth experiences. Youth with disabilities and their colleagues conducted seven focus group discussions, with an average of five students in each focus group, and we used a qualitative descriptive method to analyze data. The findings uncovered similarities and differences in the barriers and facilitators to inclusive education among students with disabilities across all sites. Participants noted limited financial support and university services, and how inaccessible spaces and harmful attitudes are all barriers that hinder their access to education and inclusion. The identified facilitators include support systems and self-directed facilitation. Although the students self-advocated and reported some support to assist in their inclusion in university, it was still insufficient. Notably, some universities are making a concerted effort toward inclusion and accessibility, but more work needs to be done. Full article

The aim of our study was to characterize the face recognition skills, theory of mind skills, and language skills of a single group of French participants with Williams syndrome (WS) compared to a group of participants with Down syndrome (DS). Twelve French-speaking participants with WS and 12 French-speaking participants with DS took part in this study. The two groups were matched for nonverbal and verbal levels. We used the Benton Facial Recognition test to study the groups’ ability to recognize faces, the Theory of Mind Test Revised, and the morphosyntactic production and morphosyntactic comprehension subtests from the French test battery “Instruments pour le Screening et l’Approfondissement de l’examen des DYsfonctionnements du Langage chez l’Enfant (ISADYLE)”. The results of the participants with WS were systematically better than those of the participants with DS. Nevertheless, although they outperformed the participants with DS, the participants with WS were far from performing at ceiling level. Most importantly, we found no significant correlations between performances on the various standardized tests for either group of participants. The evaluation of cognitive skills in a single group of French participants with WS confirmed that they present a complex profile. Because these competences are strongly influenced by social and cultural aspects, it is therefore essential to develop studies for specific languages, including when one is examining a rare developmental disability. Full article

Objective: To identify the factors influencing the implementation of telerehabilitation (TR) in a post-stroke early supported discharge (ESD) rehabilitation program as perceived by clinicians and managers. Methods: A descriptive qualitative design was used in collaboration with a Canadian ESD stroke rehabilitation program. After 15 months of pre-COVID-19 implementation and 4 months of COVID-19 implementation, 9 stakeholders (7 clinicians, 1 coordinator and 1 manager) from an ESD program participated in 2 focus groups online or an individual interview. Qualitative data were coded and analyzed semi-deductively for the pre-COVID-19 and COVID-19 phases using the Consolidated Framework for Implementation Research (CFIR). Results: Four categories emerged related to the CFIR, each with themes: (1) Telerehabilitation, which included “Technology” and “Clinical activities”; (2) Telerehabilitation users, which included: “Clients’ characteristics” and “Clinicians’ characteristics”; (3) Society and healthcare system, which included “Changes related to COVID-19” and “ESD program”; and (4) TR implementation process, which included “Planning” and “Factors that influenced practice change”. Conclusions: Factors impacting TR implementation in the ESD program were found to be numerous and varied according to the pre-COVID-19 or COVID-19 phases. Clinicians’ motivation regarding potential gains for them in using TR was key in its implementation during the COVID-19 period. Full article