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Background: Future planning is a way of supporting people with intellectual disabilities and their families to think about their support needs as both groups age. Adults with intellectual disabilities, family members, and service providers are often involved in planning processes. However, it is unclear whose perspectives dominate in the literature and how these might vary. Method: A scoping review of qualitative studies (2012-2022) was undertaken to identify which perspectives are present in research on adults with intellectual disabilities and future planning, and to examine key aspects of their future planning experience. Results: The perspectives of parents and siblings predominate in the research. Those of adults with intellectual disabilities and service providers are underrepresented. Conclusions: The views of adults with intellectual disabilities need to be elevated in future planning and they need to be meaningfully involved in planning processes. Focus on the experiences of service providers is likewise needed.

Practitioners will be aware of the gaps in resources for older people with a learning disability. Developed countries have social policies that consider people with intellectual disability as citizens with [...]

Background: Active Support is a staff practice that aims to increase engagement of people with intellectual disabilities. This study seeks to: (1) identify the outcomes of staff using Active Support and how these are measured; (2) identify how the views of people with intellectual disabilities have been included in Active Support research., Method: A scoping review was conducted of peer-reviewed articles about Active Support published between 2009 and 2023., Results: Sixteen articles were identified. Outcomes included engagement, the quality of staff support, choice and challenging behaviour. Structured observations were the most frequently used measurement method. Only two studies explored people with intellectual disabilities' perspectives about Active Support., Conclusions: Consistent use of similar measures is a strength of Active Support research. Including perspectives of people with intellectual disabilities may provide insight into dimensions of support not been measured and assist in further developing these measures and Active Support practice., (© 2024 The Author(s). Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: Previous research identifies organisational culture as one of a number of factors associated with the quality of life outcomes of group home residents' with intellectual and developmental disabilities. This study aims to elaborate on the dimensions of group home culture in settings in England., Method: Participant observations and semi-structured interviews with staff were carried out in two group homes. Field-notes, interview notes and transcripts were analysed using inductive thematic analysis by a researcher naïve to the project and the previous literature. Initial coding was re-examined after sensitisation to theorised models in previous literature to identify the most parsimonious fit. The two settings were rated and compared using a five-point Likert scale for each of the dimensions., Results: The findings describe group home culture across seven dimensions. There were mixed ratings across the different dimensions reflecting inconsistencies in culture that were reflected in staff practice. The challenge in assigning a global rating of culture in group homes, which includes interactions across multiple staff and multiple residents over time, was highlighted., Conclusion: The development of an observational measure of culture is highlighted as potentially helpful in understanding and responding to culture in services for individuals with intellectual and developmental disabilities., (© 2024 The Author(s). Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: Active Support is a person-centred practice that enables people with intellectual disabilities (IDs) to engage in meaningful activities and social interactions. The Active Support Measure (ASM) is an observational tool designed to measure the quality of support that people with IDs living in supported accommodation services receive from staff. The aim of the study was to explore the underlying constructs of the ASM., Methods: Multilevel exploratory factor analysis was conducted on ASM data (n = 884 people with IDs across 236 accommodation services) collected during a longitudinal study of Active Support in Australian accommodation services., Results: Multilevel exploratory factor analysis indicated that 12 of the ASM's 15 items loaded on two factors, named Supporting Engagement in Activities and Interacting with the Person., Conclusions: The 12-item ASM measures two dimensions of the quality of staff support. Both technical and interpersonal skills comprise good Active Support., (© 2024 The Authors. Journal of Intellectual Disability Research published by John Wiley & Sons and MENCAP.)

Background: The strength of practice leadership predicts the quality of Active Support but it can be compromised by other demands on frontline managers. The study aimed to identify and understand differences in practice leadership over time and between organisations., Method: Data collected in 2022 in 96 services from 11 organisations using the Observed Measure of Practice Leadership were compared to similar data from 2013 and 2018. Qualitative fieldnotes were analysed thematically., Findings: Practice leadership scores increased significantly between 2013 and 2018 but declined significantly between 2018 and 2022. Scores were significantly higher in organisations that had implemented Active Support since 2013 compared to later adopters. Higher scoring organisations had structures that supported frontline managers with practice leadership and that countered increasing administrative demands., Conclusions: Establishment of support structures for practice leadership by organisations warrants further investigation together with the relative importance of each task of practice leadership., (© 2024 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Lesbian, gay, bisexual, trans, queer, and asexual (LGBTQA+) young people with disability are known to experience higher rates of harassment or abuse than LGBTQA+ young people without disability. This study focused on participants in Australia and identified factors associated with harassment or abuse among LGBTQA+ adolescents and young adults who reported a disability as well as associations with mental health outcomes. Analyses were conducted from a national survey that included 2,500 LGBTQA+ people who reported a disability and were aged 14 to 21 years. Measures included experiences in the past 12 months of verbal and physical harassment or abuse due to one's sexual orientation or gender identity, sexual harassment or abuse, mental health, suicidality, and sociodemographic traits. Overall, 48.4% of participants with disability reported experiencing verbal harassment or abuse, 12.4% physical harassment or abuse, and 29.7% sexual assault or harassment. In multivariable regression analyses, verbal harassment or abuse was significantly more likely among trans men, participants with an intellectual disability, and those who were "out" to most or all of their family. Physical harassment or abuse was significantly more likely among participants with a physical or sensory disability. Sexual harassment or abuse was significantly more likely among trans women and participants with a physical or sensory disability. Participants who experienced harassment or abuse were also significantly more likely to have attempted suicide in the past 12 months. These findings will assist policymakers and practitioners in identifying contexts linked to a heightened risk of abuse among LGBTQA+ young people with disability and further underscore an immediate need to address and prevent harm in this population., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interests with respect to the authorship and/or publication of this article.

Background: Lesbian, gay, bisexual, trans, queer, and asexual (LGBTQA+) people with disability report greater levels of abuse than those without disability., Objective: This study sought to further understand these experiences by examining factors associated with experiences of abuse among LGBTQA+ adults who reported a disability in Australia., Methods: A national survey was conducted that included 2629 LGBTQA+ people who reported a disability aged 18 years and older, with data collected on experiences of verbal abuse, sexual assault, and social exclusion in the past 12 months as well as demographic characteristics., Results: Of participants with disability, 42.5% reported experiencing verbal abuse, 17.4% sexual assault, and 50.3% social exclusion based on their sexuality or gender identity in the past 12 months. From multivariable analyses, verbal abuse was significantly more likely among trans women and non-binary participants and among those classified with more severe disability. Sexual assault was significantly more likely among those who lived in a rural area or had a higher income. Social exclusion was significantly more likely among those who were trans woman or non-binary, identified as bisexual, aged 18-24 years, or born in an English-speaking country other than Australia., Conclusions: These findings illustrate contexts for heightened risks of specific forms of abuse and highlight an urgent need to understand and address experiences of abuse and their consequences among LGBTQA+ people with disability., (Copyright © 2022 Elsevier Inc. All rights reserved.)

This paper offers more-than-care as a framework for analysing how vulnerability emerges in the lives of people with intellectual disability beyond relations of care. More-than-care detaches vulnerability from the identity category of disability. It provides a framework for conceptualising vulnerability in an unequal, neoliberalising, and ableist world and sheds new light on the ever-evolving constitution of vulnerability and disability. This intervention breaks with conceptions of vulnerability centred on care needs that leave other circumstances that inform vulnerabilities unexamined. Importantly, the framework shifts responsibility for managing vulnerabilities away from carers alone. The more-than-care framework is grounded in socio-material conceptualisations of disability and advances a tripartite framing of vulnerability. First, it grounds studies of vulnerability in histories of spatially uneven investment in infrastructure and resources that shape how care and other practices can assemble to produce, challenge, and manage vulnerability. Second, it recalibrates dominant conceptions of the temporality of vulnerability to ensure sensitivity to the unpredictability of emergent vulnerabilities. Third, in following a socio-material conceptualisation of intellectual disability, more-than-care expands discussions about agency in the context of vulnerability. These concepts are empirically examined through an analysis of how vulnerability emerges in the lives of four self-advocates with intellectual disability during Melbourne's first and second COVID-19 lockdowns. The analysis shows that vulnerability was highly dynamic and unpredictable as it emerged in complex socio-material assemblages that included care arrangements, embodied experiences and agencies, and past instances of neglect and exploitation., (The information, practices and views in this article are those of the author(s) and do not necessarily reflect the opinion of the Royal Geographical Society (with IBG). © 2022 The Authors. Transactions of the Institute of British Geographers published by John Wiley & Sons Ltd on behalf of Royal Geographical Society (with The Institute of British Geographers).)

Introduction: Preliminary evidence suggests that progressive resistance training may be beneficial for people with Prader-Willi Syndrome (PWS), a rare genetic condition that results in muscle weakness and low muscle tone.To establish whether community-based progressive resistance training is effective in improving the muscle strength of people with PWS; to determine cost-effectiveness; and, to complete a process evaluation assessing intervention fidelity, exploring mechanisms of impact, understanding participant experiences and identifying contextual factors affecting implementation., Methods and Analysis: A multisite, randomised controlled trial will be completed. Sixty participants with PWS will be randomised to receive either progressive resistance training (experimental) or non-progressive exercise (placebo control). Participants will be aged 13 to 60 years, be able to follow simple instructions in English and have no contraindications to performing progressive resistance training. The experimental group will complete progressive resistance training two times weekly for 24 weeks supervised by an exercise professional at a community gym. The control group will receive all aspects of the intervention except progressive overload. Outcomes will be assessed at week 25 (primary endpoint) and week 52 by a blinded assessor. The primary outcome is muscle strength assessed using one repetition maximum for upper limb and lower limb. Secondary outcomes are muscle mass, functional strength, physical activity, community participation, health-related quality of life and behaviour. Health economic analysis will evaluate cost-effectiveness. Process evaluation will assess safety and intervention fidelity, investigate mechanism of impact, explore participant experiences and identify contextual factors affecting implementation. Data collection commenced in February 2020 and will conclude in September 2023., Ethics and Dissemination: Ethical approval was obtained from The Royal Children's Hospital Human Research Ethics Committee (HREC/50874/RCHM-2019) under the National Mutual Acceptance initiative. Research governance approvals were obtained from five clinical sites. Results will be disseminated through published manuscripts, conference presentations, public seminars and practical resources for stakeholder groups., Trial Registration Number: ACTRN12620000416998; Australian and New Zealand Clinical Trial Registry., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Purpose: A rights perspective proposes supported decision-making as an alternative to substitute decision-making. However, evidence about supported decision-making practice is limited. Our aim was to build evidence about building the capacity of decision supporters., Methods: Eighteen parents of people with intellectual disabilities were trained in decision support using the La Trobe Support for Decision-making Practice Framework. Data from repeated semi-structured interviews and mentoring sessions were used to capture parental reflections on the value of training., Results: The training acted as a catalyst for parent self-reflection and the Framework prompted them to adopt a more deliberative approach to supporting decision-making. Some parents perceived increased confidence of their adult offspring in expressing preferences resulting from their own changed approach., Conclusions: This study demonstrates the efficacy of this Framework and evidence-based training in building the capacity of parental decision supporters to be consistent with the rights paradigm. IMPLICATIONS FOR REHABILITATIONThe La Trobe Support for Decision-making Practice Framework is an evidence-based approach to decision support practice with an accompanying set of free online resources which can be used by individual practitioners or programs to inform their practice and build the capacity of supporters.Parents of adults with intellectual disabilities value training in the La Trobe Support for Decision-making Practice Framework, which they consider helps to develop their decision support skills and self-reflection.Parents also value individual mentoring following training to assist them to apply the principles of the practice framework to the everyday support for decision-making they provide to their adult son or daughter.Training in support practice should be accompanied by individual mentoring or other strategies to assist parents of adults with intellectual disabilities to discuss and solve the difficult issues they confront in providing decision support more aligned to the rights paradigm.

Background: A growing body of evidence attests to the disproportionate impact of COVID-19 on persons with intellectual and developmental disabilities (IDD) during the pandemic. This study asked caregivers about their perceptions of how COVID-19 impacted them and the people they support. Method: An online survey was conducted in 12 countries during August-September 2020 and sought information on demographics, support practices, information and training, experiences of COVID-19, social distancing, and wellbeing, as measured by the DASS12. This study reports on 3,754 family members, direct support professionals, and managers who participated in the survey. Results: Caregivers observed increases in depression/anxiety, stereotyped behaviours, aggression towards others and weight gain in the person(s) they supported. They also reported difficulties supporting the person(s) to access healthcare.  Families reported reducing or ceasing employment and absorbed additional costs when supporting their family member. Direct support professionals experienced changes in staff shifts, staff absences, increased workload and hiring of casual staff. Caregivers' wellbeing revealed high levels of stress, depression, and less so anxiety. The strongest predictor of wellbeing among families was observation of changes in mood in the person(s) they supported, while for direct support professionals, the strongest predictors of wellbeing were reorganisation of staff shifts and increases in new direct support staff.  Discussion: Findings support the contention of this population experiencing a disproportionate burden during the COVID-19 pandemic, reflecting historical inequities in access to healthcare and other human rights violations which are now protected under the United Nations Convention on the Rights of Persons with Disabilities., Competing Interests: No competing interests were disclosed., (Copyright: © 2022 Linehan C et al.)

Background: Lesbian, gay, bisexual, transgender, queer (LGBTQ) and gender diverse adults with intellectual disability experience exclusion within disability services., Objective: This review explores the experiences of social inclusion/exclusion of this cohort in the context of disability services., Search Method: A systematic search was conducted of peer-reviewed research published between January 2014 and April 2019. Five databases returned 66 articles plus three from hand searches., Appraisal and Synthesis: Nine articles were included in this review. The Critical Appraisal Skills Programme tool was used to assess the quality of the research. NVivo 12 was used as a tool to organise the articles., Results: Marginalisation of LGBTQ adults with intellectual disability in western societies is mirrored in disability organisations. There remains a dearth of research into experiences of transgender people with intellectual disability who use disability services., Conclusions: Research into interventions that support the inclusion of this cohort in disability support services is needed., (© 2021 John Wiley & Sons Ltd.)

Background: Australian disability services must comply with quality standards defined by federal government. Standards are abstract, focus on paperwork and rarely describe what good service quality looks like in practice. This research explored frontline day service staff's perceptions of good service quality to identify ways that it may be better monitored., Methods: Using a constructivist grounded theory methodology, semi-structured interviews were conducted with 9 frontline staff from 3-day services. Interviews were recorded, transcribed and analysed for themes using constant comparison and line-by-line coding., Results: Five categories of good practice were identified: collaborative hands-on leadership, well-planned services, respect for people with intellectual disabilities and their carers, a culture of continuous improvement and professionalization of the support worker role., Conclusions: Results align with research undertaken in accommodation services for people with intellectual disabilities, suggesting commonalities in frontline staff's perceptions of quality in both day and accommodation services., (© 2021 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background : This protocol outlines research to explore family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods : An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore their perceptions of the impact of COVID-19 in terms of demographics, living arrangements, access to services, social distancing, and carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 18 countries worldwide for international comparison. The survey team have extensive personal and professional networks and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin's Human Research Ethics Committee (HS-20-28-Linehan). Dissemination : Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies., Competing Interests: No competing interests were disclosed., (Copyright: © 2020 Linehan C et al.)

Background: Research has shown that there is variability in quality of life (QOL) outcomes for people with intellectual disabilities who live in group homes. The aim was to examine dimensions of group home culture as predictors of QOL outcomes., Method: The Group Home Culture Scale (GHCS) was used to measure staff perceptions of culture in 23 group homes. QOL data were available from 98 people with intellectual disabilities. Multilevel modelling was used to examine the associations between the GHCS subscales and four QOL-dependent variables., Results: Of the GHCS subscales, Effective Team Leadership and Alignment of Staff with Organizational Values significantly predicted residents' engagement in activities. Supporting Well-Being significantly predicted residents' community involvement. None of the GHCS subscales significantly predicted domestic participation and choice making., Conclusions: The findings suggest that strategies to improve Effective Team Leadership and Supporting Well-Being dimensions of culture may contribute to enhancing certain QOL outcomes., (© 2020 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background : This protocol outlines research to explore the impact of coronavirus disease 2019 (COVID-19) on individuals who have intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods : An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore the impact of COVID-19 on this population in terms of demographics, living arrangements, access to services, the impact of social distancing, and also carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 16 countries worldwide for international comparison. The survey team have extensive personal and professional networks in intellectual disability and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin's Human Research Ethics Committee (HS-20-28-Linehan). Dissemination : Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies., Competing Interests: No competing interests were disclosed., (Copyright: © 2020 Linehan C et al.)

Background: Organizational culture in group homes for people with intellectual disabilities has been identified as influencing staff behaviour and residents' quality of life (QOL). Despite this influence, culture has been under-researched, with no published and validated instrument to measure its dimensions in group homes. The aim was to develop such a measure., Method: The Group Home Culture Scale (GHCS) was developed using a theory-driven approach. Items were generated from the research literature, which were reviewed by experts and tested in cognitive interviews. Data from 343 front-line staff were used for exploratory factor analysis., Results: The content and face validity of the GHCS were found to be acceptable. Exploratory factor analysis indicated that the GHCS measured seven dimensions of group home culture. Cronbach's alpha for the dimensions ranged from 0.81 to 0.92., Conclusions: The GHCS has potential use in research to determine whether dimensions of group home culture predict the quality of staff support and residents' QOL., (© 2019 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: Previous research has shown poor hospital experiences and dire outcomes for people with intellectual disability. The main objective of this study was to prospectively track episodes for adults with intellectual disability (ID) in Australian hospitals, with a focus on indications of the quality of care provided., Methods: A prospective audit of hospital records over 35 months yielded quantitative data about patient characteristics, frequency and length of hospital episodes, diagnostic assessments and outcomes, post-emergency department (ED) destinations and post-discharge recommendations. Fifty participants were recruited largely by identification on hospital ED entry. An audit of patients' hospital records was conducted towards the end of hospital episodes, using a tool developed for the study., Results: Participants were mostly men (70%), aged 42.9 years on average, living mostly with family (46%) or in supported accommodation (44%). Of 157 recorded episodes, 96% started in ED,  85% required urgent or semi-urgent care and 62% were in the first 3 months of study participation. Average time in ED exceeded the 4-h national benchmark, met in 40% of episodes. One or more diagnostic assessments were conducted in 91% episodes and others in short stay units. Almost half (49%) resulted in a ward stay. With an extreme data point removed, <1-35 days were spent in wards. The most frequent diagnosis in 75% of episodes was for digestive problems, followed by nervous system problems then injuries. Median length of bed stays reflected data available for Australian refined diagnosis-related groups. High hospital re-presentations were found: for 67% of episodes in total, 26% (n = 12) of which were within 72 h and 59% (n = 23) within 30 days., Conclusions: Adults with ID presented frequently to ED and often had lengthy stays. We found no indication of poor care practices in terms of hospital staff willingness to keep patients in ED and conduct of diagnostic assessments. Frequent re-presentations, however, indicated failed hospital care at some level., (© 2020 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd.)

Background: Active Support, now widely adopted by disability support organizations, is difficult to implement. The study aim was to identify the factors associated with good Active Support., Methods: Data on service user and staff characteristics, quality of Active Support and practice leadership were collected from a sample of services from 14 organizations annually for between 2 and 7 years, using questionnaires, structured observations and interviews. Data were analysed using multilevel modelling (MLM)., Results: Predictors of good Active Support were adaptive behaviour, practice leadership, Active Support training, and time since its implementation. Heterogeneity, having more than six people in a service and larger organizations were associated with lower quality of Active Support., Conclusions: In order to ensure that Active Support is consistently implemented, and thus, quality of life outcomes improved, organizations need to pay attention to both service design and support for staff through training and practice leadership., (© 2019 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Purpose: At least 5% of people in Australia and the USA have cognitive impairment and require support for decision-making. This paper details a research program whereby an evidence-based Support for Decision Making Practice Framework has been developed for those who support people with cognitive disabilities to make their own decisions across life domains. Methods: The La Trobe framework was derived from a research program modeled on the Medical Research Council four-phase approach to development and evaluation of complex interventions. We completed phase one (development) by: (1) systematically reviewing peer-reviewed literature; and (2) undertaking qualitative exploration of the experience of support for decision-making from the perspectives of people with cognitive disabilities and their supporters through seven grounded theory studies. Results of phase two (feasibility and piloting) involving direct support workers and health professionals supported phase three (evaluation) and four (implementation), currently underway. Results: The framework outlines the steps, principles, and strategies involved in support for decision-making. It focuses on understanding the will and preferences of people with cognitive disabilities and guides those who provide support including families, support workers, guardians, and health professionals. Conclusions: This framework applies across diverse contemporary contexts and is the first evidence-based guide to support for decision-making.Implications for RehabilitationSupport for decision-making is essential to maximise the participation of people with cognitive disability in decisions about their lives.Research has shown that support for decision making is a complex multifaceted process comprising multiple overlapping steps, delivered through individually tailored strategies and informed by practice principles.The La Trobe practice framework provides an evidence-based guide for engaging in effective support for decision-making with people with cognitive disability.

Background: Disability support organisations have embraced Active Support, but it has proved difficult to embed in services., Aims: This study aimed to identify the factors associated with increases over time in the quality of Active Support., Method: Data were collected on the predicted variable of the quality of Active Support, and predictor variables of service user, staff and service characteristics, including practice leadership, and composition and size of services from 51 services in 8 organisations over 2-7 time points. Data were analysed using multi-level modelling., Results: There was significant linear change in Active Support scores (group mean centered at the organisational level) over time. Individuals with lower support needs received better Active Support and those with higher support needs experienced greater increases over time. Stronger practice leadership and more staff with training in Active Support were significant predictors of the quality of Active Support. Larger services with seven or more individuals and where there was a very heterogeneous mix of individuals were associated with lower quality of support., Conclusions: Ensuring strong practice leadership, and staff training in Active Support that emphasises the principle of adapting support to each individual's level of ability and preferences are key to delivering high levels of Active Support., (Copyright © 2019 The Author(s). Published by Elsevier Ltd.. All rights reserved.)

Purpose : To apply a human rights lens to measuring patient experience. Specifically, to determine if the perspectives of communicatively vulnerable people have been included in the patient experience research used to inform the development of the Australian Hospital Patient Experience Question Set (AHPEQS). Method : Thirty-nine qualitative studies on patient experience that informed the development of AHPEQS were critically appraised in terms of reporting on: population of interest, eligibility criteria, communicative demands of the research and communicative supports provided. Result : Eleven of 39 studies included sufficient information about the population to determine that communicatively vulnerable people would have been approached to participate. Three of these studies explicitly excluded people who were communicatively vulnerable, and four did not report on the provision of any communication supports to enable communicatively vulnerable people to participate. Conclusion : Intentional exclusion and/or a lack of communication supports restrict the rights of people who are communicatively vulnerable to express their opinions about what matters to them in hospital. Inadequate reporting of qualitative research on patient experience also makes it difficult to determine if the perspectives of people who are communicatively vulnerable have informed the development of the AHPEQS.

Purpose: The often-invisible access barriers to public transport encountered by people with communication disabilities, who have sensory, language or cognitive impairments have gained little attention. This study investigated the experiences of people with communication disabilities on a rail network in Victoria, Australia to identify the barriers they encountered., Methods: Twenty-one passengers with communication disabilities participated in either an individual interview or a focus group. They talked about their experiences of train travel, factors that made travelling difficult and suggestions for making travelling easier. A six-phase approach to thematic analysis was conducted to identify themes., Results: The difficulties identified in travelling fell into three themes: (a) variable accessibility of information, (b) negative impact of a large and complex service system, and (c) an uncertain culture of help seeking and giving. Only two passengers had ever complained but all identified ways to improve the service. They suggested, better staff training, more use of communication tools, mechanisms to enable passengers to seek help, and attention to making information easier to understand., Conclusions: For transport to be accessible to people with communication disabilities many different types of adjustment are required. Using multiple modes of communication with attention to understandability and consistent responses from public contact staff skilled to interact in multiple ways, may be the most flexible and effective means of responding to difficulties posed by the complex and unpredictable nature of train services. Implications for Rehabilitation People with communication disabilities are a diverse group which includes people with physical, sensory, speech, language, and cognitive impairments. Public transport services need to provide a range of communication adjustments to enable people with communication disabilities to travel successfully. Transport services must retain and refine accessible alternatives to online information and booking systems for people with cognitive impairments to avoid widening the digital divide. Frequent and unavoidable changes to train services mean that skilled public contact staff, access to information and a culture of help seeking and giving are particularly important in facilitating access for people with communication disabilities.

Background: The aim was to explore the relationship between quality of active support and communication support for people in group homes with high and low support needs., Methods: Data from 182 service users, 20-81 years (mean = 40), 89 with high support needs, were observed to have either good (n = 142) or poor (n = 40) communication support. Measures were of quality of active support, engagement and staff contact; field notes provided examples of good and poor communication supports., Results: We found a relationship between the quality of communication support and active support. Receiving good communication was associated with higher levels of engagement. Field notes included some examples of appropriate communication supports, but limited use of augmentative and alternative communication (AAC)., Conclusions: Staff show limited use of appropriate communication with people having high support needs who require AAC. Strategies to improve quality of practice are discussed., (© 2018 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.)

Article 12 of the UNCRPD on equal recognition before the law, places an obligation on member states to 'provide access by persons with disabilities to the support they may require in exercising their legal capacity'. This has resulted in an increased focus on the concept and practice of supported decision-making, as opposed to substitute decision-making, for those with cognitive disabilities. To date, translation of this concept into law has been limited. However, Law Reform Agencies, tasked with reviewing legal decision-making schemes are increasingly recommending incorporation of legally recognised supported decision-making measures. This paper identifies the contribution of Law Reform Agencies' reports and recommendations to the evolving body of knowledge in relation to supported decision-making. In particular, it analyses the rationales for recommendations favouring the introduction of forms of legally recognised supported decision-making and the types of legal models of supported decision-making being recommended by Law Reform Agencies., (Copyright © 2018 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Background: Research has shown Australian group homes, and supported living options, fail to support people with intellectual disabilities (IDs) to develop social connections. This pilot study evaluates the effectiveness of a visiting dog walking program to facilitate encounters with other community members., Method: Sixteen adults with IDs were assigned to one of two groups, matched on key characteristics. Group 1 had 14, 1-hour outings in the community with a dog and their handler; Group 2 had 14 outings with a handler alone, followed by an additional five outings with a handler and a dog. Within and between group differences were analysed according to number of encounters when a dog was present and absent. Qualitative data provided insights into the nature of these encounters., Results: The number of encounters was significantly higher when a dog was present than when participants went out into the community with a handler alone. This pattern was reflected in the qualitative data, which also suggested the presence of a dog helped to break social norms about speaking to strangers and discourage disrespect towards people with IDs., Conclusions: A dog walking program has the potential to encourage convivial encounters, which in the long term could be catalysts to help people with IDs build social connections in their communities; this should be further explored., (© 2018 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd.)

Background: Paperwork is a key tool that transforms organizational intentions into actions in group homes, although prescriptive procedures may limit how frontline staff use it in practice. The aim of this study was to explore how frontline staff use paperwork in group homes for people with intellectual disability and identify practice implications., Method: Constructivist grounded theory methodology guided the research. Data collection included semi-structured interviews and participant observations. Coding, comparison and sorting methods were adopted to analyse how staff used paperwork., Results: Staff followed organizational paperwork rules when they aligned with their resident-focused approach to work. When they perceived rules to misalign with this approach, they managed paperwork by adjusting the time and place of completion, managing content, creating alternative tools and refusing completion., Conclusions: Staff purposefully managed paperwork rather than simply following procedures. Disability service organizations could develop flexible paperwork procedures and include frontline perspectives in paperwork development., (© 2018 John Wiley & Sons Ltd.)

Background: Involving consumers in producing health services is mandated in many countries. Evidence indicates consumer partnerships lead to improved service design, quality and innovation. Involving participants from minority groups is crucial because poor understanding of distinctive needs affects individuals' service experiences and outcomes. Few studies consider service compliance with consumer partnering requirements or inclusion of minority group participants., Methods: An online survey structured by domains of the Australian National Safety and Quality in Health Service Standards (NSQHS, 2013), was conducted. Questions covered consumer partnering in service planning, management and evaluation plus patient care design and inclusion of consumers from minority groups. Approximately 1200 Australian hospital and day surgery services were identified and 447 individual email addresses were identified for staff leading consumer partnerships. Quantitative data were analysed using SPSS. Qualitative responses, managed in NVivo, were analysed thematically. Frequencies were produced to indicate common activities and range of activities within question domains., Results: Comprehensive responses were received from 115 services (25.7%), including metropolitan and non-metropolitan, private and public service settings. Most respondents (95.6%) "partnered with consumers to develop or provide feedback on patient information". Regarding inclusion of participants from minority groups, respondents were least likely to specifically include those from socially disadvantaged backgrounds (23.6%). Public health services were more likely than private services to engage with consumers., Conclusions: The survey is the first to include responses about consumer partnering from across Australia. While many respondents partner with consumers, it is clear that more easily-organised activity such as involvement in existing committees or commenting on patient information occurs more commonly than involvement in strategy or governance. This raises questions over whether strategic-level involvement is too difficult or unrealistic; or whether services simply lack tools. Minority views may be missed where there is a lack of specific action to include diversity. Future work might address why services choose the activities we found and probe emerging opportunities, such as using social media or online engagement.

Background: Group home frontline staff have a critical role in implementing service policies, yet research typically examines implementation issues from an organisational perspective. The aim of this study was to explore the self-perception of frontline staff about their role in group homes for people with intellectual disability., Method: Constructivist grounded theory methodology guided the study. Data were collected with frontline staff through semistructured interviews and participant observations. Coding and sorting methods were used to analyse participants' self-perception., Results: Frontline staff felt they were valuable contributors who knew the service setting and residents well. Despite this staff felt powerless in their roles, excluded from organisational dialogue, stressed and exhausted., Conclusions: Frontline staff have critical insight into service implementation although disability service organisations may limit their capacity to contribute to this. Further action could explore new ways to better nurture frontline staff engagement in organisational dialogue., (© 2017 The Authors Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.)

Background: The quality of life (QOL) of people with intellectual disability living in supported accommodation services is variable, influenced by many possible factors. Various frameworks have attempted to identify these factors without assigning value, direction of influence or relative impact on outcomes., Methods: A realist review of the literature aimed to expose different propositions about variables influencing QOL outcomes and review the strength of supporting evidence for these, to identify their relative influence. Evidence was reviewed for and against each of five clusters., Results: Evidence was strongest for the presence of staff practices (use of Active Support), front-line management practice (use of practice leadership), culture (enabling and motivating), human resources policies and practice (that support front-line leaders and recruitment of staff with the right values), adequate resources, and small, dispersed and homelike settings., Conclusions: The evidence informs policy and practice but in some clusters remains limited, warranting further research which measures outcomes on all QOL domains., (© 2016 The Authors Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.)

Background: Little progress has been made towards community participation of people with intellectual disability despite it being a policy aim since the 1980s. We aimed to identify the features of programmes designed to support community participation., Method: A scoping review was conducted of peer-reviewed literature between 2000 and 2015, about interventions to support community participation for adults with intellectual disability., Results: A small body of evidence relates to the design and effectiveness of interventions to enhance community participation. Seventeen studies reported programmes reflecting three conceptualizations of community participation (as social relationships, as convivial encounter and as belonging) that used strategies such as active mentoring, facilitative support worker practice and arts-based programmes., Conclusions: Studies showed the diverse and person-centred nature of community participation and demonstrated the need for larger-scale studies of promising interventions that include details of costs, and strategies to guide implementation of policies to support community participation., (© 2017 The Authors Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.)

Purpose: Although adults who sustain a severe traumatic brain injury (TBI) require support to make decisions in their lives, little is known about their experience of this process. The aim of this study was to explore how participation in decision making contributes to self-conceptualization in adults with severe TBI., Method: We used constructivist grounded theory methods. Data included 20 in-depth interviews with adults with severe TBI. Through a process of constant comparison, analysis involved open and focused coding until clear categories emerged and data saturation was achieved., Results: Self-conceptualization emerged as a complex and multifaceted process, as individuals with TBI aimed to reestablish a sense of autonomy. We describe a recursive relationship in which decision-making participation assists the dynamic construction of self, and self-concept contributes to the experience of making decisions. The role of an individual's social support network in acting as a bridge between participation and self-conceptualization is presented., Conclusions: Findings emphasize that contributing to decisions about one's own goals across a range of life areas can reinforce a positive self-concept. It is vital that supporters understand that participation in decision making provides a pathway to conceptualizing self and aim to maximize the person's participation in the decision-making process. Implications for Rehabilitation Previous research has identified that the experience of sustaining TBI has a significant impact on a person's conceptualization of self. This study identified that decision-making experiences play an important role in the ongoing process of self-conceptualization after injury. Decision-making experiences can reinforce a person's self-concept or lead them to revise (positively or negatively) their sense of self. By maximizing the person's decision-making participation, those around them can support them to develop positive self-attributes and contribute to shaping their future goals.

Background: Stigma attached to having an intellectual disability has negative implications for the social identities and inclusion of people with intellectual disability., Aim: The study explored the effects of membership of independent self-advocacy groups on the social identity of people with intellectual disability., Method: Using a constructivist grounded theory methodology, semi-structured interviews were conducted with 25 members of six self-advocacy groups which varied in size, resources, location and policy context: two based in the Australian states of Victoria and Tasmania and four in the UK., Results: Collegiality, ownership and control by members characterized groups. They gave members opportunities for paid or voluntary work, skill development and friendship which contributed to their confidence and engagement with life. Possibilities for new more positive identities such as being an expert, a business-like person, a self-advocate and an independent person were opened up. Self-advocacy is an important means of furthering social inclusion of people with intellectual disability., (© 2015 John Wiley & Sons Ltd.)

Building on cultural dimensions of underperforming group homes this study analyses culture in better performing services. In depth qualitative case studies were conducted in 3 better group homes using participant observation and interviews. The culture in these homes, reflected in patterns of staff practice and talk, as well as artefacts differed from that found in underperforming services. Formal power holders were undisputed leaders, their values aligned with those of other staff and the organization, responsibility for practice quality was shared enabling teamwork, staff perceived their purpose as "making the life each person wants it to be," working practices were person centered, and new ideas and outsiders were embraced. The culture was characterized as coherent, respectful, "enabling" for residents, and "motivating" for staff. Though it is unclear whether good group homes have a similar culture to better ones the insights from this study provide knowledge to guide service development and evaluation.

Objectives : Research shows practice leadership to be a factor in the successful implementation of active support. The aim of the study was to explore differences in staff practice, associated with the presence of a practice leader in a shared supported accommodation service. Methods : Quality of support and engagement for 189 service users with intellectual disability from 58 services were collected during a 2 h observation using the EMAC-R and ASM. The practice leader was present in 19 services ( n  = 59) and absent in 39 ( n  = 111). An Observed Measure of Practice Leadership was administered during a second visit to each service. Results : When the practice leader was present, levels of engagement and active support were statistically higher ( p  < 0.01). Although measured at a different time, observed practice leadership was also higher in services where the practice leader was present during the first observation. Conclusion : The level of observed practice leadership and presence of the practice leader appear to be associated with better quality of support. This finding provides further evidence of the importance of systems for supporting, monitoring, modeling, and improving staff practice for effective implementation of active support., (© 2016 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.)

There is growing recognition of the right of all individuals, including those with cognitive impairment, to make decisions about their own lives. However, little is known about how the process of decision making is experienced after severe traumatic brain injury (TBI). This study used constructivist grounded theory to explore processes used by adults with severe TBI and their parents in making decisions about life after injury. Data consisted of 18 individual, in-depth interviews with four dyads (consisting of an individual with severe TBI and his or her parent). The overlying construct emerging from the data was a process of reimagining the future, which influenced how participants approached and participated in making decisions. In line with this construct, two central themes described processes of joint decision making within parent-adult child relationships after severe TBI over time: (1) making decisions with parental support, and (2) reducing parental involvement. These findings emphasise the complexity of supporting decision making after injury, and illustrate that both parents and their adult children with TBI use explicit and implicit strategies to facilitate increased participation in making decisions. This study also underscores the need for brain injury clinicians to consider the needs of parents who find themselves in this role.

This article is concerned with exploring the historical development of Reinforce, the oldest self-advocacy organisation for people with intellectual disability in Victoria. In particular, it considers how governmental indifference, as well as ad hoc funding and support, has hindered the growth of the organisation and, more generally, the growth of the self-advocacy movement in Victoria. By obtaining a deeper understanding of the input from the policy makers, professionals, and supporters working in the field of intellectual disability, we can begin to comprehend some of the reasons for the comparatively slow development of self-advocacy in this country.

Background: Improving staff performance is an issue in services for people with intellectual disability. Practice leadership, where the front line leader of a staff team focuses on service user outcomes in everything they do and provides coaching, modeling, supervision and organisation to the team, has been identified as important in improving staff performance. To date this finding is based only on self-report measures., Methods: This paper describes and tests an observational measure of practice leadership based on an interview with the front-line manager, a review of paperwork and observations in 58 disability services in Australia., Results: The measure showed good internal consistency and acceptable inter-rater reliability. Practice leadership was associated with staff practice and outcomes for service users. The observed measure of practice leadership appears to be a useful tool for assessing whether leadership within a service promotes enabling and empowering support by staff. It was found to discriminate higher and lower performing services in terms of active support., Conclusions: The measure had good reliability and validity although some further testing is required to give a complete picture of the possible uses and reliability of the measure. The measure is potentially useful in contexts of both research and service development. The confirmation of previous findings from self-report measures that practice leadership is related to the quality of staff practice and outcomes for service users has implications for policy and practice in terms of the training of managers and structures for organisational management., (© 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Background: This paper reports on the feasibility and outcomes of a transition to retirement programme for older adults with disability. Without activities and social inclusion, retirees with disability are likely to face inactivity, isolation and loneliness., Methods: Matched intervention and comparison groups each consisted of 29 older individuals with disability. There were 42 men and 16 women with a mean age of 55.6 years While attending their individual mainstream community group 1 day per week, intervention group participants received support from community group members trained as mentors. We assessed participants' loneliness, social satisfaction, depression, life events, quality of life, community participation, social contacts, and work hours before and 6 months after joining a community group., Results: Twenty-five (86%) of the intervention group attended their community group weekly for at least 6 months. They increased their community participation, made an average of four new social contacts and decreased their work hours. Intervention participants were more socially satisfied post-intervention than comparison group members., Conclusions: The results demonstrate that participation in mainstream community groups with support from trained mentors is a viable option for developing a retirement lifestyle for older individuals with disability., (© 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Promoting community participation for people with intellectual disability through encounter with strangers is an integral part of the mission of disability support workers. This paper offers detailed micro-level analysis of the practices of support workers when they accompany a person with intellectual disability outside their home and explores the subtle differences which make some staff practices more effective than others in promoting more convivial encounters with strangers. Based on 160 h of observations of twenty-six adults with intellectual disability in a variety of public places, and interviews and focus groups with their support workers, the paper points to some of the critical judgements support workers need to make when considering whether, when and how to initiate or intervene in such encounters., (© 2015 John Wiley & Sons Ltd.)

Background: A dimension of the culture in group homes is staff regard for residents. In underperforming group homes, staff regard residents as being not 'like us' (Bigby, Knox, Beadle-Brown, Clement & Mansell, 2012). We hypothesized the opposite pole of this dimension, in higher performing group homes, would be that staff regard residents positively., Method: Three in-depth qualitative case studies were conducted in higher performing group homes using participant observation, interviews and document review., Results: Consistent pattern of staff practices and talk, as well as artefacts, demonstrated staff had a positive regard for residents, who were seen as being 'like us'. Explicit and continuing attention was given to sustaining positive regard for residents in everyday staff practices and to turning abstract values into concrete realities., Conclusions: This positive cultural norm was established, operationalized and embedded through structures, such as a formal policy about language, and processes such as peer monitoring and practice leadership., (© 2014 John Wiley & Sons Ltd.)

Primary Objective: To understand how the spouses of individuals with severe TBI experience the process of supporting their partners with decision-making., Design: This study adopted a constructivist grounded theory approach, with data consisting of in-depth interviews conducted with spouses over a 12-month period. Data were analysed through an iterative process of open and focused coding, identification of emergent categories and exploration of relationships between categories., Participants: Participants were four spouses of individuals with severe TBI (with moderate-severe disability). Spouses had shared committed relationships (marriage or domestic partnerships) for at least 4 years at initial interview. Three spouses were in relationships that had commenced following injury., Main Outcome and Results: Two main themes emerged from the data. The first identified the saliency of the relational space in which decision-making took place. The second revealed the complex nature of decision-making within the spousal relationship., Conclusions: Spouses experience decision-making as a complex multi-stage process underpinned by a number of relational factors. Increased understanding of this process can guide health professionals in their provision of support for couples in exploring decision-making participation after injury.

Aim: This paper explores the experiences of older people with intellectual disability (ID) who moved from a group home to residential aged care, from the perspective of family members, aged care staff and former group home staff., Method: Interviews were conducted with staff and family members associated with 10 people with ID who recently moved from disability group homes into nine aged care residential facilities. Dimensional analysis was used to analyse 31 interviews., Results: Aged care staff focused primarily on health outcomes and identified and addressed several previously undiagnosed conditions. The primary concern of staff from the residents' former group homes was social isolation. Families acknowledged the health benefits but were equally concerned about social isolation., Conclusion: The findings highlight the importance of addressing health and social needs of people with ID and indicate that an increased accountability for both social and clinical outcomes is required., (© 2013 ACOTA.)

Background: People with intellectual disability are at risk of poor hospital experiences and outcomes. The aims were to conduct a content and quality review of research into the acute hospital experiences of both people with intellectual disabilities and their carers, and to identify research gaps., Method: A systematic search was conducted of primary research between 2009 and 2013 that addressed the experiences of the target group in general acute care hospitals. Quality appraisal tools yielded scores for quantitative and qualitative studies, and overarching themes across studies were sought., Results: Sixteen studies met inclusion criteria. Quality scores were 6/8 for a survey, and 2/11-9/11 (mean =5.25) for qualitative studies/components. Content analysis revealed seven over-arching themes covering individuals' fear of hospital encounters, carer responsibilities, and problems with delivery of care in hospitals including staff knowledge, skills and attitudes., Conclusions: Our review of eligible papers revealed that despite 20 years of research and government initiatives, people with intellectual disability continue to have poor hospital experiences. The need for research to identify and investigate care at specific points of encounter across a hospital journey (such as admission, diagnostic testing, placement on a ward, and discharge) as well as to include people with a diversity of disabilities is discussed in terms of potential to influence policy and practice across health and disability sectors.