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AbstractThe Medical Treatment Planning and Decisions Act 2016 (Vic) is a step toward law reform to implement supported decision making and the rights of people with disabilities enshrined in the United Nations Convention on the Rights of Persons with Disabilities. The Act includes provisions to enable a person, who might otherwise be assessed as being without decision making capacity, to make an advance care directive with support. This case study explores the implementation of the Act through the experiences of a person with intellectual disability, their medical practitioner and supporter in making an advance care directive. The findings identify shortcomings of the Act that effectively exclude people with severe intellectual disabilities from supported decision making. They illustrate the need for greater institutional support for supported decision making and educational strategies for medical practitioners if the potential of the Act is to be realised for people with intellectual disabilities. Finally, the findings indicate the relevance of the La Trobe Support for Decision Making Practice Framework as a guide to decision support in this context.

AbstractBackgroundAustralian 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.MethodsUsing 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.ResultsFive 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.ConclusionsResults 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.

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.

AbstractSystems that measure service quality in disability organizations commonly review service delivery processes, rather than quality of life outcomes for service users. Disadvantages of measuring processes rather than outcomes are that funders and regulators may fail to identify poor quality support until major crises occur. One solution has been the development of quality systems that combine measuring processes and the personal outcomes of service users, though the efficacy of such systems has not been explored. The aim of this article was to identify quality systems that combine measurement of processes and personal outcomes, and explore the advantages and limitations of these to inform future development of quality assurance systems. The study used an internationally accepted eight domain quality of life framework and a qualitative content analysis to map and evaluate the characteristics of three combined quality systems currently used in the disability sector; the Care Quality Commission framework for community adult social care services, the adult social care outcomes framework and personal outcome measures. The three systems were unbalanced, focusing more on procedure than personal outcomes. None of the systems measured personal outcomes comprehensively against all eight quality of life domains and the rigor applied to such measurement varied markedly. Combined systems have potential to compensate for limitations of systems that measure either processes or outcomes, but could be improved by a greater focus on measuring service user outcomes, including all quality of life domains and use of mixed methods such as interviews and observation of the support people receive.

BackgroundPaperwork 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.MethodConstructivist 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.ResultsStaff 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.ConclusionsStaff purposefully managed paperwork rather than simply following procedures. Disability service organizations could develop flexible paperwork procedures and include frontline perspectives in paperwork development.

BackgroundGroup 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.MethodConstructivist 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.ResultsFrontline 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.ConclusionsFrontline 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.

Background  Social interaction is integral to social inclusion. Little is known about the nature of social interaction between adults with severe intellectual disability and those with whom they engage.Method  Participants were six adults with intellectual disability and people identified as those with whom they shared demonstrable pleasurable interactions. Data were collected through observation and interviews, and data were analysed using a constructivist grounded theory approach.Results  An overarching category of sharing time together with two main sub‐categories of Having fun and Hanging out emerged. Having fun was composed of routines and comedic interaction; hanging out was comprised of contact and presence.Conclusions  Legitimizing mirth and sharing time in social interactions may supplement paid worker job satisfaction and increase opportunities for social inclusion by people with severe intellectual disability.

Abstract 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.