Organisational culture in 'better' group homes for adults with intellectual and developmental disabilities in England: A qualitative study.

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.

The strength of Frontline Practice Leadership in Australian supported accommodation services: Challenges confronting service providers.

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.

Factors Associated With Experiences of Harassment or Abuse Among Lesbian, Gay, Bisexual, Trans, Queer, and Asexual Young People With Disability in Australia.

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.

More-than-care: People with intellectual disability and emerging vulnerability during pandemic lockdown.

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.

Factors associated with experiences of abuse among lesbian, gay, bisexual, trans, queer, and asexual (LGBTQA+) adults with disability in Australia.

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.

Progressive resistance training in young people with Prader-Willi syndrome: protocol for a randomised trial (PRESTO).

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.

COVID-19 IDD: Findings from a global survey exploring family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities (IDD) and their caregivers.

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.

Social inclusion of LGBTQ and gender diverse adults with intellectual disability in disability services: A systematic review of the literature.

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.

"I used to call him a non-decision-maker - I never do that anymore": parental reflections about training to support decision-making of their adult offspring with intellectual disabilities.

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.

What is good service quality? Day service staff's perspectives about what it looks like and how it should be monitored.

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.

Dimensions of group home culture as predictors of quality of life outcomes.

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.

COVID-19 IDD: A global survey exploring family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers.

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.

Development of an evidence-based practice framework to guide decision making support for people with cognitive impairment due to acquired brain injury or intellectual disability.

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.

Factors that predict good Active Support in services for people with intellectual disabilities: A multilevel model.

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.

Development and psychometric evaluation of the Group Home Culture Scale.

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.

Factors associated with increases over time in the quality of Active Support in supported accommodation services for people with intellectual disabilities: A multi-level model.

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.

Representation and reporting of communicatively vulnerable patients in patient experience research.

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.

Communication access on trains: a qualitative exploration of the perspectives of passengers with communication disabilities.

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.

An exploration of communication within active support for adults with high and low support needs.

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.

Supporting decision-making of adults with cognitive disabilities: The role of Law Reform Agencies - Recommendations, rationales and influence.

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.