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Background: This study explores the perceptions of supported accommodation staff and their managers of the support needs of residents ageing with intellectual disabilities, and their experiences of adjusting services for this group in the context of individualised funding. Method: Qualitative interviews were conducted with 21 staff working in Australian supported accommodation services. Findings: Four themes emerged. The first captured the staff's limited understanding of ageing and the medicalisation of support needs. The second identified staff practices and adjustments to service provision to facilitate residents' healthy ageing. The third described staff commitment to facilitating ageing residents to age in place, and the fourth identified staff challenges and opportunities in supporting ageing residents in the context of the National Disability Insurance Scheme (NDIS). Conclusions: Findings may inform the development of practice guidelines and training for supported accommodation staff, protocols for intersections between disability, aged care and health sectors, and adequate policy responses to support older residents' healthy ageing.

Background: This study reports the findings from a Dutch study, exploring care workers' challenges and approaches in guiding young people with intellectual disabilities in their online lives. Method: Using an inductive research design 33 semi-structured interviews were conducted with care workers. Results: Care workers report challenges that revolve around three themes: (1) the perceived intangibility of the online lives of clients and (2) Risk perception: feeling stuck between control and freedom. (3) Differences in guiding approach between care workers. Based on these results a conceptual model is presented that aims to show the connection between these challenges and guiding approaches. Conclusion: Perceptional processes may influence care workers' guiding approaches. This raises important questions about the implications of these guiding approaches on the level of support clients with intellectual disabilities receive and the effectuation of their rights and liberties under the 2006 United Nations (UN) Convention on the Rights of Persons with Disabilities.

Background: Direct support professionals' (DSPs') attitudes toward nutrition are important for supporting a healthy lifestyle of persons with intellectual disabilities. However, there are no instruments to measure it. The aim of this study was to compose a questionnaire and determine its internal validity. Method: The previously validated Health Enhancing Physical Activity questionnaire was adapted into the Attitude of DSPs for Health Enhancing Nutrition (ADSP-HENU) and completed by 31 DSPs. The internal validity of the questionnaire was investigated by Cronbach's Alpha and an exploratory non-parametric item response analysis (NIRT). Results: The internal consistency by Cronbach's Alpha was good (0.87, 95% CI [0.81-0.94]). NIRT showed monotonicity with wide confidence bounds and sufficient point polyserial correlations of the items. This indicates that each attributes to the overall measured attitude. Conclusion: The internal validity of the ADSP-HENU is promising, and it can be used in daily practice for evaluation or adapting interventions to DSPs' needs.

Background: Australian research indicates that post-parental care transitions are rarely planned and primarily occur following a crisis for a primary carer. This paper examines disability staff perceptions of transitions for people with intellectual disability and their ageing carers in rural South Australia. Method: A focus group interview model was used, with a semi-structured interview guide initiating group discussions. A thematic analysis methodological approach was selected to analyse the data. Results: This paper reports on the theme of Service Delivery, which has three sub-themes of Availability; Distance; and Individual Access. The key findings are presented and supported by the use of exemplar quotes. Conclusions: This research indicates a poor intersection of general and specialist services is inhibiting post-parental transitional care for rural people. Simply allocating money to the individual does not resolve the issues, and the interface between different services needs to be better considered at government level.

Background: Despite growing recognition of their right for inclusion in society, people with intellectual disabilities are often excluded from mainstream services, or experience poor service outcomes. Method: Taking a relational approach that considers the interpersonal relations and interactions that occur in mainstream service settings in Australia, this paper examines the features of services that research participants considered more inclusive. Results: Relations between service users with and without intellectual disabilities, mainstream service staff and disability support workers in inclusive mainstream services were characterised by; respect; warm, welcoming and convivial interpersonal engagement; active listening; proactive assistance; flexibility; mediation to create a safe environment; and collaboration and shared responsibility by both mainstream staff and disability support workers in supporting a service user with intellectual disability. Conclusions: Building on these results, we put forward a set of principles for facilitating inclusion of people with intellectual disabilities in mainstream services. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities may find difficulties in their school-to-work transition. The current study aimed to determine which factors have been investigated and which are relevant to this transition process. Method: A systematic review was undertaken using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines and included studies published between 2011 and 2023 on initiatives that facilitate the school-to-work transition. Results: Four broad types of interventions were encountered: career and vocational guidance, training for the development of key competencies, school-based transition programs, and work-based learning. Most studies were quantitative and included key competencies in training activities that focus on specific skills that facilitate the school-to-work transition process. Conclusions: In order to enable the continuity of processes related to school-to-work transition and to improve inclusive employment and social skills for people with intellectual disabilities, there is a clear need to collect initiatives across countries. [ABSTRACT FROM AUTHOR]

Objectives: To characterise the changes at work experienced by psychologists working with people with intellectual disabilities during the pandemic and whether these changes, stressors and aspects of working life were associated with mental wellbeing and occupational stress. Methods: Ninety-seven psychologists completed an online survey. Free text comments were analysed using thematic analysis and triangulated with our quantitative findings. Results: Occupational stress, learning new roles, demands at home, and changes due to COVID-19 were associated with poorer mental wellbeing, while uncertainty about the role, a shortage of personal protective equipment, and poorer mental wellbeing were associated with occupational stress. Two main themes emerged during the thematic analysis: being human and being an employee, and triangulation revealed agreement. Conclusions: The wellbeing and occupational stress of psychologists working with people with intellectual disabilities have been affected during the pandemic. It is of note that almost a quarter of our sample reported having been redeployed.

Background: Organisational culture in group homes for people with intellectual disabilities has been identified as an influence on service delivery and staff behaviour. The aim was to examine patterns of culture across group homes in disability organisations. Method: The Group Home Culture Scale (GHCS) was used to measure staff perceptions of culture. Data were available from 260 staff who worked across 58 group homes managed by eight organisations. Using scatterplots and measures of dispersion, the scores on the seven GHCS subscales were examined for patterns of integrated (i.e., similarities) and differentiated (i.e., variability) culture within the organisations. Results: Patterns of differentiated culture were found in six organisations for one or more GHCS subscales. Patterns of integrated culture were found in three organisations for one subscale. In two organisations, patterns of both integrated and differentiated culture were found. Conclusions: The findings contribute to the conceptualisation of and research into organisational culture in group homes, with implications for changing and maintaining culture.

Background: Building Circles of Support is an innovative strategy for developing natural support networks. This study explored some of the ambiguity in the conceptualisations, operational elements, and perceived outcomes of Circles of Support programs. Method: A comparative case study of three Australian Circles of Support programs was conducted. Data included document review and qualitative interviews with 27 key stakeholders. Qualitative analysis of the data from each program was analysed using categories of the program logic as a conceptual framework, followed by cross-case analysis to identify commonalities and differences. Results: Findings show conceptual variability between programs, which shared similar overarching intents but differed in program, strategies, target population and outcomes, which were shaped by the missions of the organisation of which they were part. Conclusion: Findings can inform the future design and evaluation of programs to support the development of informal support network for people with intellectual disabilities.

Background: The multi-disciplinarity of long-term care for people with intellectual disabilities makes organisations seek stability and predictability, complicating implementing innovations. Interventions to implement a method for reducing restrictive measures were analysed through the lens of Normalisation Process Theory to understand the social mechanisms at play. Methods: Process notes, collected during a trial in which a method to reduce restrictive measures was implemented, were analysed guided by implementation interventions defined by Cochrane Effective Practice and Organisation of Care Review Group. These interventions were mapped to social mechanisms of Normalisation Process Theory. Results: Implementation interventions were widely used in which clients' perspectives were expressed (client-related-interventions), and consensus processes were held with care professionals. These interventions initiated NPT's social mechanisms' Coherence, Cognitive Participation and Collective Action. Conclusions: The emphasis on consensus and clients' perspectives when methodically reducing restrictive measures reflects some unique implementation challenges in long-term intellectual disability care.

Background: "Convivial encounter" provides a new lens for understanding social inclusion of people with intellectual disabilities, characterised by shared activity and friendly interactions with strangers without intellectual disabilities. Places, props and support practices facilitate incidental convivial encounters. This study explored processes for deliberately creating opportunities for such encounters. Methods: A case study design used mixed methods to collect data from two disability organisations about convivial encounters the people they supported experienced and staff practices that created these. Results: Most commonly convivial encounters created involved repeated moments of shared activity through which people became known by name by others without disabilities. Eight approaches and five processes were used to create these opportunities for encounter. Conclusions: The study provides a blueprint for scaling up or creating interventions to create opportunities for convivial encounters, and opens lines of enquiry about staff competences needed and parameters for costing this type of intervention.

Background: There is a need to systematically compare and contrast mortality predictors and disparities in people with intellectual disabilities (ID) for global prevention strategy development. Method: Bibliographic databases and grey literature were searched using systematic review methodology and the machine learning tool "Abstrackr." Results: Fifty-four relevant articles and reports published from 2010 to 2019 were identified. Nearly all (n = 53) were from high-income countries. Mortality disparities were apparent and consistent across countries and publication years, with no evidence of a decrease over time. People with ID can still expect to live 12-23 years less than the general population and are particularly vulnerable to deaths from respiratory infections and epilepsy. Conclusions: Both population and individual-level approaches to prevention are indicated to tackle the continuing mortality disparities in people with ID, including consideration of reasonable adjustments in general population efforts to reduce health inequalities.

Background: One would assume that infection outbreaks such as the COVID-19 pandemic have a deleterious effect upon the physical, mental, and/or social functioning of people with intellectual disabilities (ID). Methods: A systematic search of four databases produced 18 articles. General information pertaining to the topics under consideration, information related to infectious diseases and ID were extracted. Results: All but one of the studies investigated the impact of infection outbreaks on the physical functioning of people with ID. Although in some instances certain studies briefly reflected on the impact of infection outbreaks on mental or social functioning, there was no empirical data available. Conclusions: There is scarce scientific knowledge on the impact of infection outbreaks on the mental and social functioning of people with ID. This underscores the exigency for further psychosocial research to both explore the impact of infection outbreaks and develop strategies to deal with them in the future.

Background: This paper presents the findings from a qualitative research project that explored what ten people with intellectual disabilities who receive care and support in a residential care facility deem valuable for living a good life and what the opportunity to manage resources for care and support themselves means to them. Method: With the use of photovoice, the 10 participants documented their care and support, and by extension, their own lives. We describe how the project was carried out and the facilitating and obstructing factors we encountered. Results: The collected images and related personal stories teach us about the central importance of significant others to the lives of the participants and their vital role as "necessary others" who nurture a multitude of possibilities. Conclusions: The increasing policy focus on independence and self-sufficiency is opposed to the vital role of relationships in the participants' view of a good life.

Background: Social vulnerability refers to the ways in which an individual is at risk of being victimised. The Test of Interpersonal Competences and Personal Vulnerability [TICPV] is an Australian assessment tool designed for adults with intellectual disabilities (ID) [Wilson et al. (1996). Vulnerability to criminal exploitation: Influence of interpersonal competence differences among people with mental retardation. "Journal of Intellectual Disability Research," 40, 8-16. https://doi.org/10.1111/j.1365-2788.1996.tb00597.x]. It aims to evaluate their social vulnerability. This study aims to conduct a preliminary cross-cultural validation of the TV-22, the French-language, enhanced and accessible version of the TICPV. Method: Twenty-nine French-speaking adults with ID answered the TV-22. The reliability and validity of this measure were assessed. Results: Performance on the test was shown to be internally consistent (Cronbach's [alpha] = 0.89; McDonald's [Omega] = 0.93), stable over time (r[subscript s](29) = 0.81, p <0.01) and a valid measure of social vulnerability. Conclusions: Results provide psychometric support for the use of the TV-22. Further research is needed to confirm these results with a larger sample.

Background: This study explores the perceptions of supported accommodation staff and their managers of the support needs of residents ageing with intellectual disabilities, and their experiences of adjusting services for this group in the context of individualised funding. Method: Qualitative interviews were conducted with 21 staff working in Australian supported accommodation services. Findings: Four themes emerged. The first captured the staff's limited understanding of ageing and the medicalisation of support needs. The second identified staff practices and adjustments to service provision to facilitate residents' healthy ageing. The third described staff commitment to facilitating ageing residents to age in place, and the fourth identified staff challenges and opportunities in supporting ageing residents in the context of the National Disability Insurance Scheme (NDIS). Conclusions: Findings may inform the development of practice guidelines and training for supported accommodation staff, protocols for intersections between disability, aged care and health sectors, and adequate policy responses to support older residents' healthy ageing. [ABSTRACT FROM AUTHOR]

Background: The co-production concept holds out the promise of forging new relationships between professionals and service users with intellectual disabilities. However, little empirical research explores the embodied practices of these projects occasion. We identify two key tensions intrinsic to such projects; the tension between expert/professional knowledge and lay/experiential knowledge, and between co-producers as different from or typical of the public they are representing. Methods: We explored how these tensions were manifested and responded to in ongoing interactions by analysing video recordings of co-design groups where people with intellectual disabilities engaged in the production of Easy Read materials. Results: We noticed the instability of participants' claims to expert/professional knowledge and the challenges of attending to and mobilising participants' experiential knowledge within the constraints of the group task. Conclusions: Interactional dynamics were managed to preserve consensus and homogeneity within the groups, with the potential for reinforcing a limited identity associated with "intellectual disability."

Background: There is limited Australian research investigating health practitioner knowledge and/or confidence in the diagnosis and treatment of mental health disorders in people with intellectual disabilities (IDs). Method: Ninety-three health practitioners from four professional groups (primary health practitioners, psychologists, mental health practitioners, and alternative therapies) completed a 34-item online survey comprising questions designed to identify participant knowledge of disorders described in the Psychiatric Assessment Schedule for Adults with Developmental Disabilities and the Therapy Confidence Scale-Intellectual Disabilities. Results: Participants demonstrated low knowledge of symptomology and were "moderately confident" to "confident" working with people with IDs. Whilst professional group showed a significant main effect on confidence levels, post-hoc analysis did not detect significant differences between the individual professional groups. Conclusions: Australian participants demonstrated confidence, but low knowledge, in treating individuals with IDs. The development of training to address deficits in practitioner knowledge of symptomology, assessment, and assessment-based communication is recommended.

Background: Dedifferentiated policy treats adults with intellectual disabilities as part of the larger group of people with disabilities. The implications of the dedifferentiated National Disability Insurance Scheme (NDIS) for adults with intellectual disabilities are explored. Methods: Analysis of peer reviewed and grey literature between 2014 and 2020 about design of the NDIS and outcomes. Results: Many participants experienced problems with NDIS implementation. Outcomes for adults with intellectual disabilities compared poorly to other groups. They were disadvantaged by standardised planning processes relying on self-expressed needs and omission of supported decision making. As the NDIS matures, it is becoming more differentiated but issues relevant to adults with intellectual disability remain largely invisible. Conclusions: Further shifts towards standardised planning and functional assessment may be disadvantageous for adults with intellectual disabilities for whom support needs are dependent on social and contextual factors, and exercise of choice on support for decision making.

Background: There is strong evidence about the effectiveness of Active Support. Recent research has established predictors of good Active Support as staff training, practice leadership, and service setting size. This paper explores features of organisational leadership and structures predictive of Active Support. Methods: Multilevel modelling with data from surveys, observations and interviews was used to identify predictors of Active Support at the levels of service users (n = 253), services (n = 71) and organisations (n = 14). Results: Good Active Support was predicted by: (1) positive staff perceptions of management, (2) prioritisation of practice and Active Support by senior managers, (3) strong management support for practice leadership, (4) organisation of practice leadership close to everyday service delivery, and (5) concentration of practice leadership with frontline management. Conclusion: These findings extend understanding of predictors of Active Support and provide indicators of service quality, with important implications for service providers, service users and those monitoring the quality of services.

Background: Organisational and service level factors are identified as influencing the implementation of Active Support. The aim was to explore differences in organisational leadership and structures to identify potential relationships between these factors and the quality of Active Support in supported accommodation services. Method: Fourteen organisations participated in this mixed methods study, which generated data from interviews with senior leaders, document reviews and observations of the quality of Active Support. Results: Qualitative analyses revealed three conceptual categories: senior leaders in organisations where at least 71% of services delivered good Active Support prioritised practice; understood Active Support; and strongly supported practice leadership. In these organisations practice leadership was structured close to everyday service delivery, and as part of frontline management. Conclusions: Patterns of coherent values, priorities and actions about practice demonstrated by senior leaders were associated with successful implementation of Active Support, rather than documented values in organisational policy or procedures.

Background: People with intellectual disabilities are one of the most disadvantaged and marginalised groups in contemporary Australian society and until relatively recently, the history of intellectual disability in Australia has been neglected. Methods: Using semi-structured, life story oral history interviews, the life stories of three people with intellectual disabilities were analysed and the importance of intellectual disability in Australia as a subject for further historical analysis highlighted. Results: In this article it has been argued that embedded in the historical detail of these life stories, we can ascertain some of the key structural patterns that have shaped the experiences and forged the identities of people with intellectual disabilities in Australia. Conclusion: By analysing and comparing the narrative structures and dominant themes in life stories of individuals with intellectual disability, this article demonstrates something of the changing and immensely varied experience of people with intellectual disabilities in Australia over the last 50 years.

BackgroundMethodResultsConclusionsA growing number of services are focused on people with intellectual disabilities. Our study investigates interpersonal justice (interpersonal treatment families receive from service professionals) perceived by family members as a heuristic (cognitive shortcut) they can use to evaluate service performance directed towards improving the quality of life of their relatives with intellectual disability.Using a sample of 86 family members, we tested a within-person model. Interpersonal justice and service performance were measured four times (T1–T4).Over time, changes in interpersonal justice were positively related to changes in service performance. Family members use the treatment they receive from professionals to superficially draw inferences (heuristic) about service performance.Our study warns about the use of superficial justice information based on a heuristic to evaluate service performance. More active participation of families in the organizational life is suggested to avoid the use of these types of cognitive shortcuts. [ABSTRACT FROM AUTHOR]

Background:Method:Results:Conclusions:Support from staff plays an important role in quality of life for people with intellectual disability. This study focuses on service users' views of Active Support as good support and whether Active Support increases the quality of everyday support in group homes.Nine service users were interviewed at baseline and at follow-up one year after staff received Active Support training. Thematic analyses were used to develop themes.Three main themes were created: (1) Home is more than just a place, it is a feeling; (2) Good care is caring with accessible communication; and (3) Time is precious. Participants were more satisfied with most of the support at follow-up, particularly choice-making, control in everyday life, relationships, and emotional support.Active Support corresponds well with service users’ perceptions of good support. In future studies of Active Support service users' voices should be a part of the follow-up. [ABSTRACT FROM AUTHOR]

BackgroundMethodResultsConclusionA peer-led self-advocacy group, Our Voice SA, is used as a case study to explore how the social engagement of people with intellectual disability contributed to their self-advocacy about things that are important to them.Secondary analyses of data (interviews, observations and program data) were thematically analysed using Clifford Simplican’s analytical lens of “freedom through encounter”.Social engagement encounters in peer-led self-advocacy led to individual and group agency for freedom. The findings explore becoming known, seen, and heard; freedom to express what matters; and unfreedom: silencing self-advocacy.A “freedom through encounter” lens is a useful perspective on how people navigate social inclusion to participate and challenge expectations. Allies were critical for overcoming structural, interdependent barriers, and supporting capacity for leadership and rights awareness that helped elevate the confidence and skills of people with intellectual disability to speak up. [ABSTRACT FROM AUTHOR]

BackgroundMethodResultsConclusionsAfter decades of planning, nurses played a pivotal role in achieving the closure of large residential institutions for people with intellectual disability by 2018. This paper describes the experiences of nurses facilitating the closure of these institutions in New South Wales and Victoria, Australia.An interview-based, qualitative study was conducted with twenty-four registered nurses from Australia who had more than twelve months’ experience of caring for people with intellectual disability any time between 1960 and 2016.Nurses facilitated transition for residents and their families during devolution. However, nurses’ personal experiences of transition to work in community settings was complicated by inconsistent preparation, uncertainty of employment, and changes in professional status.Extensive experience and detailed knowledge of their clients enabled nurses to maximise opportunities for smooth transition out of institutions into community care for people with intellectual disability. Devolution was personally and professionally costly for some nurses. [ABSTRACT FROM AUTHOR]

Background: The training of healthcare professionals impacts the health of individuals with intellectual disabilities (ID). This study presents an analysis of how medical students at the University of the Witwatersrand, Johannesburg, South Africa, are trained to treat this marginalised population. Methods: This was an exploratory qualitative study using multiple methodologies, including a curricular review, 18 purposively selected key informants' interviews, and 3 focus group discussions, with medical students across 4 relevant teaching departments. Using Lennox and Diggens' curricular framework, thematic content analysis was conducted to identify dominant themes and subthemes. Results: Of Lennox and Diggens' 15-point model of knowledge, skills, and attitudes, 3 aspects were not taught, and attitudes fared the most poorly whereas skills fared the strongest. Differences in the quality and nature of training offered on clinical rotations were highlighted, and the practical exposure to patients with ID was found to be limited. Conclusions: The shortfalls in content and unplanned clinical exposure suggest that a more focused teaching approach to people with ID will result in greater competence and confidence in graduates.

Background: Constipation impacts health-related quality of life with a burden similar to other chronic conditions. This study characterises the prevalence of constipation and its associated factors in older adults with intellectual disability. Methods: Data from the Intellectual Disability Supplement of The Irish Longitudinal Study on Ageing was analysed using bivariate and multivariate approaches. Results: Constipation affected 43.5% of this cohort and was more common in females, those in residential settings, and those with a severe/profound level of intellectual disability. The type of residence, level of intellectual disability, a low fat diet, high cholesterol, multimorbidity and, physical activity predicted constipation status with 67.7% accuracy. Physical activity was associated with lower constipation prevalence, where minimal activity was sufficient to observe this effect. Conclusions: Constipation is a common health concern in older people with intellectual disability. This analysis reveals characteristics that should inform the careful monitoring of bowel health in this population. [ABSTRACT FROM AUTHOR]

Background: Dedifferentiation refers to the trend of positioning people with intellectual disabilities together with other disabled individuals for political purposes, to act as a counter to differentiated approaches. This article explores the influence of dedifferentiation in professional support settings through the lived experiences of people with intellectual disabilities and their staff. Methods: Ethnographic research, including participant observation and interviews, conducted with an intellectual disability social care provider and an independent community café, both based in an area of England. Results: Tensions exist between dedifferentiation aims and the lived experiences of people with intellectual disabilities, who often struggled to achieve in areas including independent community inclusion and paid employment. Conclusion: Dedifferentiation has disadvantages for people with intellectual disabilities. It can underestimate and mask needs that people experience in relation to their disabilities. Policy and professional support might be improved by (1) recognising these limits and (2) incorporating people's real-world needs into support provision. [ABSTRACT FROM AUTHOR]

In the debate on the social inclusion of people with intellectual disabilities, we find various proposals for dealing with sameness and difference. A more inclusive understanding of difference is needed to ensure that the perspectives of people with intellectual disabilities are taken into account. This study involved in-depth interviews with 25 individuals with intellectual disabilities, 24 people without disabilities, and 15 professionals; and observations in neighbourhood projects. Facilitating convivial encounters is a promising way of engaging with difference and an interesting alternative to "othering," "similarising," or "romanticising difference." Convivial encounters do not promote sameness or difference; instead, they allow groups to jointly develop transient shared identifications. In community projects, sameness and difference can be reinvented so that people can engage with difference in an enriching way. Therefore, convivial encounters, especially when organised, can be seen as a new framing of the ideal of social inclusion. [ABSTRACT FROM AUTHOR]

This paper uses recent developments in services in the UK as a case study to identify some of the challenges facing the provision of residential supports to people with intellectual disabilities. Three main areas are discussed: (1) responding to existing levels of unmet need and increasing levels of demand; (2) reducing inequalities in access to and the quality of services; and (3) obtaining and demonstrating "best value". In particular, discussion is focused on the relationships between needs, resources, process and outcomes in residential services for people with intellectual disabilities and the implications of these relationships for obtaining "best value". [ABSTRACT FROM AUTHOR]