Search

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

People living in rural areas of Australia are significantly disadvantaged, compared to metropolitan dwelling peers, in accessing basic support services. Australians with intellectual disabilities living in rural areas are at specific risk of further disadvantage. This article examines the findings and recommendations of the Disability Royal Commission through the lens of rurality. A frequency analysis of key words relating to rurality indicated an interesting trend in relation to the term "remote" which had a higher count rate than either "regional" or "rural". This finding may indicate that issues from non-remote rural locations were less well represented. The Final Report included many examples from people with intellectual disabilities or their carers regarding the lack of vital services in rural areas, and specifically highlighted the need to introduce a "provider of last resort". Problems with support were also identified following domestic violence and rape, and concerns noted regarding the provision of public transport in rural areas. The Final Report contains 222 recommendations, of which 11 contained a specific focus addressing a rural issue, and these are briefly discussed. It is unfortunate that, in some key support areas, there appear to be an implicit expectation that the remaining 200+ recommendations will all apply evenly across Australia, irrespective of location. Nonetheless, the Disability Royal Commission should be commended for their inclusive approach to involving people with disabilities living in rural areas which led to the reporting from rural people with intellectual disabilities and their carers regarding the issues that they have faced. [ABSTRACT FROM AUTHOR]

This editorial introduces a two-part Special Issue on the Disability Royal Commission and People with Intellectual Disabilities in Australia. The Commission was established in 2019 to investigate violence, abuse, neglect, and exploitation of people with disabilities. The Commission's Final Report, delivered in 2023, included 222 recommendations, some of which were not unanimous. The report covers a wide range of issues and includes the perspectives of people with disabilities. The Commission's work involved public hearings, private sessions, and community engagements. The report has generated controversy, as it focuses on negative experiences and poor-quality services, without exploring positive experiences and factors contributing to good quality services. The text also discusses the challenges faced by governments in responding to the Commission's recommendations and mentions the release of the Independent Review of the National Disability Insurance Scheme (NDIS), which intersects with the Commission's recommendations. The text provides guidance on accessing the Commission's publications, submissions, public hearings, and other resources. It introduces the articles in Part 1 of a Special Issue that critically analyze the Commission's findings and recommendations on various topics related to people with intellectual disabilities. The text concludes by mentioning that Part 2 of the Special Issue will include additional articles on education, health, and Positive Behaviour Support. [Extracted from the article]

The objective of the study was to validate adapted versions of the Glasgow Anxiety Scale for people with Intellectual Disabilities (GAS-ID) simultaneously developed in English and French. A sample of 361 youth with mild to moderate intellectual disability (ID) (M = 15.78 years) from Australia (English-speaking) and Canada (French-speaking) participated in this study. The results supported the factor validity and reliability, measurement invariance (between English and French versions), a lack of differential items functioning (as a function of youth's age and ID level, but not sex in the English-Australian sample), temporal stability (over one year interval), and convergent validity (with global self-esteem and school loneliness) of a bi-factor exploratory structural equation modeling representation of the GAS-ID. The present study supports the psychometric properties of the English-Australian and French-Canadian versions of the adapted GAS-ID.

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

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

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

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

This article describes an exploratory study of deaths of people with intellectual disabilities (IDs) that had occurred in group homes managed by an ID service provider in Australasia. Such settings are increasingly recognised as places for both living and dying. Little is known about the extent to which they encounter the death of a person with ID and with what outcomes. Data were obtained from service records and telephone interviews on 66 deaths occurring within a 2-year period. The findings suggest that death is an important but relatively rare event within ID services. This rate of death was influenced by the age structure of the population. Most of the deaths occurred within a hospital setting. Cause of death did not have much impact upon place of death. However, setting characteristics seemed to have some influence. As an exploratory study, lessons for future population-based research in this area are addressed.

Introduction: Families have a significant role in the lives of people with intellectual disabilities and challenging behaviors. However, it is not clear how actively families are involved when people with intellectual disabilities and challenging behaviors are living in out-of-home care. This scoping review explored the frequency and type of family involvement in the application of a person-centered approach in the care for people with intellectual disabilities and challenging behaviors. Methods: Authors conducted electronic searches through six databases: Embase, Medline, Web of Science, PsycINFO, Cochrane Central, and Google Scholar (2005 to 2019) and evaluated relevant publications. Results: Based on the 15 articles identified, only five articles report on family involvement. In addition, frequency of contact, and how family is involved appears to differ between different person-centered approaches. Conclusion: More active family involvement in person-centered approaches for people with intellectual disabilities and challenging behaviors is recommended.

Background: People with intellectual disabilities at the end of life are at risk of receiving inadequate and inequitable end-of-life care. This study explores their unmet needs, opportunities for person-centred care and experiences of health service use. Methods: Qualitative interviews with 26 experienced health professionals and carers were used to explore their patients' and residents' unmet needs and end-of-life care options and to outline strategies to support them. Results: A range of challenges and unmet needs experienced by people with intellectual disabilities are presented in themes: (1) accommodation setting at the end of life: dying 'at home'; (2) personal factors and networks: a circle of support; (3) end-of-life medical care and decision-making. Strategies to facilitate good end-of-life care and a model of care are presented. Conclusions: Well-prepared and collaborative disability and health service workforces are needed, together with flexible and adequate end-of-life funding to ensure compassionate and person-centred care.

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

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

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

This study aimed to investigate the experiences of people with intellectual disability (ID) using information and communication technologies (ICTs) and the ways these technologies foster social connectedness. In partnership with a community mental health organization, this qualitative descriptive study explored the experiences of 10 people with ID using ICTs. Participants described how ICTs "Opened the Door to Possibilities" in their life -- ICTs provided an avenue for connecting with other people, a means to pursue personal interests and a tool for organizing everyday life. "Opening the door to possibilities" was further understood as movement towards digital inclusion for people with ID, conceptualized as the fit between social opportunity and personal skills. We have identified the prominent role social supports play in creating (and constraining) opportunities for digital inclusion, and that digital inclusion has the potential to enable social connectedness and the development of agency. Consideration of the complex interaction between social opportunity and personal skills, and the mediating influence of supports, will enhance the inclusion of people with ID.

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

Background: Research into befriending for people with intellectual disabilities is limited. This study aimed to explore the impact, mechanisms of change, and limitations of a befriending scheme for adults with intellectual disabilities and/or autism. Methods: Participants were recruited using convenience sampling. Thirteen individuals with intellectual disabilities and/or autism were interviewed and data thematically analysed. Results: Four themes were generated: 'Something fun for me'; 'A good connection'; 'Increasing independence'; and 'A life less quiet'. Befriending had direct benefits through the activities undertaken and the befriending relationships themselves being fun and reducing isolation. Befriending facilitated belonging, improved access to mainstream activities, and fostered independence by providing safety and support. The importance of shared interests and external support for the relationship was highlighted. Conclusions: Positive outcomes of befriending were found, supporting existing literature and revealing new information from the voices of participants with intellectual disabilities themselves. [ABSTRACT FROM AUTHOR]

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

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

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

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

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

Background: A policy commitment to social inclusion has brought about some positive changes in the lives of people with intellectual disabilities; yet many also continue to experience social isolation, poverty and abuse. The authors introduce a framework for belonging from the literature and then present a study exploring the views of people with intellectual disabilities about belonging. These are discussed in relation to the framework identified from the literature. Method: Three focus groups with 24 participants with intellectual disabilities were conducted in New South Wales and Victoria (Australia). The authors used inductive content analysis to identify four meanings of belonging: (i) belonging in relation to place, (ii) as being part of a community, (iii) as having relationships and (iv) as identity. Also discussed are commonly experienced barriers to belonging identified by participants. Conclusions: Implications for policy, service provision and practice are discussed.

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.

While health care for people with an intellectual disability in Australia has transitioned from institutional specialisation to a mainstream primary care model, access and quality of health care in this system has been questioned. This study aimed to explore the general practitioner's perspective in providing this level of care in the community. A qualitative study using semi-structured interviews to explore attitudes, experience, knowledge, and supports of South Australian general practitioners was conducted. Thematic analysis was used to identify key themes. Eight general practitioners were interviewed, two from rural South Australia and six in urban practice. Three key themes were identified: a fear of the unknown; complexity of patient needs; and emotional and financial burnout. To improve health outcomes for people with intellectual disabilities, general practitioners need education pertaining to the specific health needs of people with intellectual disabilities, improved collaboration between service providers and specialists; and financial recognition for providing care to patients with complex health needs. Public awareness is required to improve access and quality of care. [ABSTRACT FROM AUTHOR]

Background: There is evidence that psychotropic medications are overprescribed and overused to manage behaviours of concern for people with intellectual disabilities. Disability support workers and support staff lack education and training on the administration and safety of psychotropic medication use. This study aimed to test the applicability and preliminary efficacy of SPECTROM, an education programme developed in the UK, in an Australian context., Methods: The training comprises two parts: Module 1 encompasses psychotropic medications, their use and side effects. Module 2 focuses on non-pharmacological interventions for supporting people with behaviours of concern. Thirty-three participants attended the training course and completed pre-training and post-training surveys on the Psychotropic Knowledge Questionnaire and Management of Aggression and Violence Attitude Scale-Revised at four time points: pre-training, 2 weeks, 3 months and 5 months post-training., Results: Psychotropic Knowledge Questionnaire scores showed statistically significant post-training improvement at all post-training time points (P < 0.05). Management of Aggression and Violence Attitude Scale-Revised scores were high at pre-training and did not change significantly at any of the post-training survey time points. A 2-week post-training feedback questionnaire reported 80% agreement that the training programme was appropriate, useful and valid. Only 36% of participants completed questionnaires at all time points., Conclusions: SPECTROM training increased staff knowledge of psychotropic medications, yet loss of participants was high. Further refinement of the applicability of the training for the Australian context and evaluation of the feasibility of implementation, clinical and cost-effectiveness of the programme are required., (© 2023 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Violence and abuse against people with intellectual disabilities are internationally recognised as a pervasive social problem. Recent years have seen the development and implementation of preventative strategies, yet only few of them have been rigorously evaluated. The present paper aims to identify preventative abuse strategies for people with intellectual disabilities and explore the evidence about their quality and effectiveness. A scoping review method was implemented, and a comprehensive search of 14 online databases identified six peer-reviewed articles, published between January 2007 and June 2019, that reported on evaluation of violence prevention strategies designed for adults with intellectual disabilities. Each program and its evaluation were critically and systematically reviewed. Overall, the analysis reveals the strategies' core elements, and highlights strengths and gaps in delivery and evaluation. More rigorous evaluation is required to establish the effectiveness of violence prevention strategies and to advance evidence-based practice in this field. IMPLICATIONS The social work profession has a critical role in the development, implementation, and evaluation of violence prevention strategies for adults with intellectual disabilities. Design of violence prevention strategies needs to be multifaceted, and embedded within the social and cultural environments of people with intellectual disabilities. Violence prevention strategies need to evolve from focusing solely on risk reduction to a broader approach encompassing the safety of adults with intellectual disabilities as part of their human rights. [ABSTRACT FROM AUTHOR]

Literature pertaining to open disclosure predominantly refers to acute care settings; this is the case in, for example, the UK, Republic of Ireland, Australia, Korea and the USA. There is, however, a dearth of literature regarding open disclosure related to people with intellectual disabilities. A practice example of open disclosure is presented here, following a serious adverse event in an organisation supporting adults with intellectual disabilities. The aim of the process was to openly disclose in a meaningful way to adults with significant intellectual disabilities and communication difficulties. An apology pathway was developed by a multidisciplinary team based on individual communication needs. A suite of resources was developed including easy read-picture agendas and sign language to support increased understanding of the apology. Service users received the apology first, followed by meetings with their families. This practice example has positive implications for service providers for people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Background: Non‐communicable diseases (NCDs), also known as chronic diseases, now constitute a major proportion of ill‐health across most adult and older populations including in people with intellectual disability. The current paper is a comparative analysis of prevalence of NCDs across mid‐aged and older‐aged people with mild intellectual disability. Method: Comparative data comes from two cross‐sectional surveys using similar methodology and timeframes. The analysis sample comprises mid‐aged group (30–50 years, N = 291) and older‐aged group (≥60 years, N = 391). Results: People with mild intellectual disability start developing NCDs in early to mid‐adulthood and increases with age. The mean number of NCDs in mid‐aged group was 0.86 (SD, 0.84) compared to 3.82 in older group (SD, 2.67). Conclusion: There needs to be early identification and management of NCDs using relevant health promotion and preventative measures at optimal intervention points. The training of healthcare professionals needs improvement. [ABSTRACT FROM AUTHOR]

The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability's Final Report identified multiple barriers preventing people with disabilities in Australia from living in suitable housing, and from being able to choose where they live, with whom they live, and how they live. The issues discussed in the Report include tenancy insecurity, difficulties accessing social housing, difficulty finding physically accessible homes, poor response to high rates of homelessness among people with disabilities, and substandard housing and living conditions in supported boarding houses. Addressing these concerns, the Report makes a number of important recommendations that span a range of housing tenures and both housing and disability policies and strategies. Focusing primarily on "mainstream" housing options, where the majority of people with disabilities live, in this article I argue that if implemented, these recommendations will have a transformative impact on housing for people with disabilities, and on people with intellectual disabilities more specifically. However, I also argue that for this to happen, a new supply of affordable housing needs to be developed and delivered at scale, and note the Commission's aversion from directly tackling this issue in its recommendations. [ABSTRACT FROM AUTHOR]

Background: Access to information and communication technologies (ICTs) is often thought to enhance the lives of people with intellectual disabilities (ID) and is considered an important aspect of digital inclusion. However, inclusion practices often fail to address societal inequalities that lead to and sustain exclusion. The aim of this research was to enhance understandings of the relationships people with ID form with technology by critically analysing the underlying assumptions of inclusion practices., Method: We employed a post-qualitative approach to reanalyse previously collected data from face-to-face interviews with 10 Australian adults with ID who attended a community literacy programme about their technology use in their daily lives. Two of social theorist Sara Ahmed's key concepts were used to analyse these data: (1) 'stickiness' of emotions, where certain (socially dominant) emotions are considered to attach to objects over time (e.g. mobile phone use is normal/good) and (2) 'fit' between people and objects, where there is a sense of comfort when objects are designed for people like you - those outside the 'norm' experience discomfort and a sense of being 'othered' in their interactions with such objects which do not fit them., Results: Our analysis identified how people with ID often attributed positive feelings to technology even when they had seemingly negative interactions with their devices (e.g. they could not use certain features, caregivers acted as gatekeepers to access). The positive associations were likely the outcome of implicitly held understandings that society highly values technology (Ahmed's stickiness of emotions). Although some participants accessed technology without difficulty, others experienced discomfort due to difficulties using devices that were not designed for them (Ahmed's fit between people and objects). Importantly, some participants had access to technology and the technical skill to use ICTs, but other factors, such as not having many friends, impacted their ability to use their devices in meaningful ways., Conclusion: Our analysis suggests that digital inclusion practices focused on providing access to technology may unintentionally harm in ways that are not immediately apparent when working with people with ID. Harms might include further marginalisation or 'othering' of people with ID. It is important to recognise that well-meaning attempts to encourage use of ICTs may be counterproductive if they lead to experiences of marginalisation. To avoid this, inclusion practices could focus beyond access to devices, and the ability to use them, to include considerations of the multiple socio-emotional effects. What is a good fit is not entirely predeterminable, exploration of the possibilities for what will work well for any individual requires experimentation and creativity, and a careful attention to unintended effects. Beyond this, the development of new technology should consider how to diversify devices that often fail to fit people with disabilities., (© 2020 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

In Australia, work health and safety legislation applies to all workplaces, including those where disability-related supports and services are provided. It is thus relevant to people with disabilities (including people with intellectual disabilities) and the workers supporting them. The legislation allows work health and safety regulators to take enforcement action against people and organisations that breach their legal duties, including through prosecution and agreeing to enforceable undertakings. Using legal databases and registers of enforcement actions, this article examines the extent and circumstances of prosecutions and enforceable undertakings in Australian disability-related services and supports and identifies nine lessons for providers of services to people with disabilities. [ABSTRACT FROM AUTHOR]

Paul thinks it's difficult if you have one worker and the worker gets sick one day. Michael says workers can help people with disabilities who have been abused by talking to them, helping them leave the bad situation, and assisting them to report the abuse to the police. Michael can't understand why Ann Marie would want only one worker to provide support. Michael says the disability organisation should have made sure that the worker Rosa did her job properly. [Extracted from the article]

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.)

Objective: The Royal Australian and New Zealand College of Psychiatrists' (RANZCP) treatment guidelines set the zeitgeist for psychiatric practice in Australasia. This review conceptualises the current approach to treatment of individuals with an intellectual disability and co-occurring mental illness in RANZCP guidelines, and its potential impact., Conclusions: The enduring omission of people with an intellectual disability and co-occurring mental illness from RANZCP clinical guidelines is a missed opportunity in normalising care and optimising outcomes for people with an intellectual disability. There are substantial cultural, political and historical overlays contributing to the ongoing divide between health and disability. In developing psychiatric guidelines, authors should consider including people with co-occurring intellectual disability as a specific population, that requires distinctive consideration.

Background: Despite the high prevalence of epilepsy and multiple barriers to care in people with intellectual disability, the risk of returning to hospital after an admission for epilepsy is largely unknown. In this study, we sought to quantify and compare readmission and emergency department (ED) presentations after hospitalisation for epilepsy in people with and without intellectual disability. Methods and findings: Using linked administrative datasets, we conducted a retrospective cohort study of people aged 5–64 years with an acute hospitalisation for epilepsy from 2005–2014 in New South Wales, Australia. Acute readmission and ED presentation rates within 30, 90, and 365 days of the index hospitalisation were estimated and compared between people with and without intellectual disability using modified Poisson regression. Of 13537 individuals with an index hospitalisation, 712 children and 1862 adults had intellectual disability. Readmission and ED presentation after the index hospitalisation were common in people with intellectual disability. Within 30 days, 11% of children and 15.6% of adults had an all-cause readmission and 18% of children and 23.5% of adults had an ED presentation. Over 60% of both children and adults presented to an ED within a year. Neurological, respiratory, and infectious conditions were overrepresented reasons for readmission in people with intellectual disability. Age-adjusted relative risks (RRs) within each period showed a higher risk of readmission and ED presentation in children and adults with intellectual disability than without. Most RRs remained statistically significant after controlling for covariates. The largest adjusted RRs were observed for readmission for epilepsy (RR 1.70, 95% CI: 1.42 to 2.04) and non-epilepsy related conditions (RR 1.73, 95%: CI 1.43 to 2.10) in children. Study limitations include lack of clinical data. Conclusions: Increased risk of returning to acute care after epilepsy hospitalisation suggests there is a need to improve epilepsy care for people with intellectual disability. We recommend research into strategies to improve management of both seizures and comorbidity. [ABSTRACT FROM AUTHOR]

The National Disability Insurance Scheme (NDIS) is a new individualised disability funding scheme (full rollout commenced in 2016) in Australia that focuses on personalised planning. This article reports the perspectives of a small group of adults with intellectual disabilities as they engaged in the scheme. A focus group was used to collect the data. Lived experience of adults with intellectual disabilities highlighted how they viewed themselves and the negative positioning they perceived through the lens of the NDIS. The NDIS has potentially created new opportunities, but the ideals of inclusion are challenged in practice. [ABSTRACT FROM AUTHOR]

Medication administration remains a central component of support for people with intellectual disabilities, yet there is limited guidance for providers regarding their obligations for policy and practice. This article reviews the issue and offers a summary of the information available for disability support providers and their obligations pertaining to medication administration. Medication administration in disability services in Australia has been left in a legislative limbo with no government body taking overall responsibility for providing clear guidelines. Given the current focus on abuse and neglect, this issue requires urgent consideration and debate, with clear policy guidelines an urgent need. [ABSTRACT FROM AUTHOR]

Background: Mental health policies outline the need for codesign of services and quality improvement in partnership with service users and staff (and sometimes carers), and yet, evidence of systematic implementation and the impacts on healthcare outcomes is limited. Objective: The aim of this study was to test whether an adapted mental health experience codesign intervention to improve recovery‐orientation of services led to greater psychosocial recovery outcomes for service users. Design: A stepped wedge cluster randomized‐controlled trial was conducted. Setting and Participants: Four Mental Health Community Support Services providers, 287 people living with severe mental illnesses, 61 carers and 120 staff were recruited across Victoria, Australia. Main Outcome Measures: The 24‐item Revised Recovery Assessment Scale (RAS‐R) measured individual psychosocial recovery. Results: A total of 841 observations were completed with 287 service users. The intention‐to‐treat analysis found RAS‐R scores to be similar between the intervention (mean = 84.7, SD= 15.6) and control (mean = 86.5, SD= 15.3) phases; the adjusted estimated difference in the mean RAS‐R score was −1.70 (95% confidence interval: −3.81 to 0.40; p =.11). Discussion: This first trial of an adapted mental health experience codesign intervention for psychosocial recovery outcomes found no difference between the intervention and control arms. Conclusions: More attention to the conditions that are required for eight essential mechanisms of change to support codesign processes and implementation is needed. Patient and Public Involvement: The State consumer (Victorian Mental Illness Awareness Council) and carer peak bodies (Tandem representing mental health carers) codeveloped the intervention. The adapted intervention was facilitated by coinvestigators with lived‐experiences who were coauthors for the trial and process evaluation protocols, the engagement model and explanatory model of change for the trial. [ABSTRACT FROM AUTHOR]

The quality of paid relationships is key for effective support, yet little is known about how people receiving and providing support understand and experience the relationship. This paper reports on recent research that explored the role of relationships with paid support workers in strengthening the rights and wellbeing of young people with cognitive disability in Australia. The research used photo-rich participatory methods with 42 pairs of young people and their support workers and drew on Honneth's recognition theory to specifically explore experiences of being valued, respected and cared about in their work together. The findings point to the importance of these connected aspects of recognition in paid support relationships, highlighting both the presence and absence of these, as well as experiences of misrecognition. The implications of recognition for strengthening support need close consideration in an international context characterised by personalisation of support, resource constraints and inquiries into poor practice. Relationships are key to good quality support. We wanted to know whether and how paid support relationships between young people with cognitive disability and support workers in Australia contribute to feeling valued, respected and cared about. Young people felt valued when the worker noticed what they did and found ways to help them achieve what they wanted to do. They felt respected when they could make decisions about choices and control over their lives. They felt cared about when they felt personal warmth, they were listened to, they felt their views mattered and they trusted each other. When young people felt harmed, they felt it deeply. The worker often did not intend to cause harm with their words or actions. The careless harm sometimes was from unequal power in the relationship. The inequality sometimes took away the voice of the young person. Sometimes the support worker also felt like their voice could not be heard. The research is important because how we feel about being with another person is key to how we know who we are. It develops the self-esteem, self-respect and self-confidence of the young person and the support worker. Knowing this matters for improving the quality of personal support. [ABSTRACT FROM AUTHOR]

Background: This paper provides an evidence base for practice in Australia from an integrative literature review of research on co-designing housing with people with an intellectual disability. The study asks: what methods and outcomes have been reported from including people with an intellectual disability in the co-design of their housing? Method: The integrative review framework described by Whitemore and Knafl (2005) was used to analyse the literature. Results: The literature searches yielded 16 articles after applying inclusion and exclusion criteria. Important gaps in the literature were found relating to: co-designing with people with an intellectual disability; the co-designing of housing with people with an intellectual disability; specific frameworks or benchmarks for co-designing with people with an intellectual disability; processes on use of proxies; and on design outcomes. Conclusions: Considerable work is required to explore and evaluate co-design processes in the design of housing with adults with intellectual disabilities, as well as how the outcomes of these processes are evaluated. [ABSTRACT FROM AUTHOR]

People with an intellectual disability experience a protective regime when it comes to their sexuality. Families, carers, services and others mediate their experiences and act as gatekeepers through policies and practices that focus on the regulation and management of sexuality. Sex education has traditionally been 'for' people with intellectual disabilities provided 'by' health professionals, teachers and other professions who position themselves as experts with the power to shape the sex education, information and learning opportunities that people with an intellectual disability access. This paper presents an alternative programme developed in collaboration with people with intellectual disabilities, which uses the stories of people with an intellectual disability and is facilitated by people with intellectual disabilities as peer educators. Crip theory rejects approaches to understanding the disability experience that privilege particular characteristics of disability experience over others including cognition. This paper argues this idea can offer a 'way in' for people with intellectual disabilities to research, debate and progress sexual rights within the current sexual rights vacuum in international law and policy. The paper demonstrates how an Australian peer education programme provides a liberating sex education for those involved through a focus on rights and use of peer education. [ABSTRACT FROM AUTHOR]

Introduction: People with intellectual disability (ID) face barriers to accessing mental healthcare. Individuals who have had significant experience in intellectual disability mental health (IDMH) can provide insights into strategies to overcome these barriers. Methods: This historical investigation applied an interpretive descriptive approach using semi-structured interviews with fourteen IDMH experts. Thematic analysis was undertaken to explore the delivery of mental health services to people with ID since the 1960s. These themes were then analyzed to identify key lessons about delivering quality mental healthcare. Results: Key lessons suggest the need for: specialized IDMH services, clear policy and governance, including people with ID in the design and delivery of services, holistic and collaborative services, an equipped workforce, quality assessment and treatment, and ongoing research. Conclusions: A historical review of mental health services for people with the ID provided valuable insights into strategies that could be implemented to enhance mental healthcare for this important group. [ABSTRACT FROM AUTHOR]

Background: Nurses provide technical and relational skills that are integral to the care of people with intellectual disability (ID) in Australia. However, little is known about the demographic profile of this section of the nursing workforce. Method: Administration of a survey to nurses whose primary role it is to care for people with ID nationwide Results: This brief report provides a description of the demographics of participants in the national survey. Of 101 participants, 78% were women and the mean age was 53.21 years. Participants held a variety of educational qualifications to prepare them for the care of people with ID. Conclusion: The findings suggest the need to consider the future unmet needs of people with ID given the ageing of this workforce. The ongoing support needs of people with ID depend upon the ongoing presence of nurses well prepared to meet the need of this group of people. [ABSTRACT FROM AUTHOR]

Background: Employment is recognised as facilitating the personal and clinical recovery of people with psychosocial disability. Yet this group continue to experience considerable barriers to work, and, constitute a significant proportion of individuals engaged with Disability Employment Services (DES). Recognition of the role of recovery-oriented practice within DES remains limited, despite these approaches being widely promoted as best-practice within the field of mental health.Methods: The Improving Disability Employment Study (IDES) aims to gather evidence on factors influencing employment outcomes for Australians with disability. Descriptive analysis and linear regression of IDES survey data from 369 DES participants, alongside narrative analysis of data collected through 56 in-depth interviews with 30 DES participants with psychosocial disability, allowed us to explore factors influencing mental health, well-being and personal recovery within the context of DES.Results: Psychosocial disability was reported as the main disability by 48% of IDES respondents. These individuals had significantly lower scores on measures of mental health and well-being (44.9, 48.4 respectively, p ≤ 0.01), compared with respondents with other disability types (52.2, 54.3 p ≤ 0.01). Within this group, individuals currently employed had higher mental health and well-being scores than those not employed (47.5 vs 36.9, 55.5 vs 45.4 respectively, p ≤ 0.01). Building on these findings, our qualitative analysis identified five personal recovery narratives: 1) Recovery in spite of DES; 2) DES as a key actor in recovery; 3) DES playing a supporting role in fluctuating journeys of recovery; 4) Recovery undermined by DES; and, 5) Just surviving regardless of DES. Narratives were strongly influenced by participants' mental health and employment status, alongside the relationship with their DES worker, and, participants' perspectives on the effectiveness of services provided.Conclusion: These findings re-iterate the importance of work in supporting the mental health and well-being of people with psychosocial disability. Alongside access to secure and meaningful work, personal recovery was facilitated within the context of DES when frontline workers utilised approaches that align with recovery-orientated practices. However, these approaches were not consistently applied. Given the number of people with psychosocial disability moving through DES, encouraging greater consideration of recovery-oriented practice within DES and investment in building the capacity of frontline staff to utilise such practice is warranted. [ABSTRACT FROM AUTHOR]

This Australian study compared perspectives of family quality of life (FQOL) of parents of preschool children attending early childhood intervention services (ECIS) with parents of school‐aged children with disability. It examined the relationships between disability‐related services, parent occupations, and FQOL. Two mixed‐methods studies with 122 participants and 24 in‐depth interviews were conducted. The first study included 72 parents attending ECIS. The second study included 50 parents of school‐aged children with disability. The quantitative aspect (N = 122) used the Beach Center FQOL survey and a demographic questionnaire. Twelve semistructured interviews were conducted for each study. Spearmann's Rho correlations for quantitative data analysis and thematic analysis for qualitative data were used for each study. A two‐way analysis of variance along with a qualitative comparative analysis were conducted to compare the findings from both studies. Results indicated lower scores on FQOL in parents with school‐aged children when compared with the ECIS group. Loss of work, lack of time for caregiver health, lack of respite, and interim residential care had detrimental impacts on parents' long‐term well‐being. Based on the results, it can be concluded that the hardships and challenges of caregiving increase as the child gets older; however, positive adaptations, beliefs, and positive transformations help FQOL. Family‐centered care and supportive practitioners assist FQOL and are highly recommended. [ABSTRACT FROM AUTHOR]

To validate a version of the Motives for Physical Activity Measure (MPAM) adapted for youth with intellectual disabilities (ID). A sample of 359 youth with mild to moderate ID from Australia and Canada respectively completed English and French versions of the MPAM-ID. Exploratory structural equation models supported the validity and reliability of the five-factor structure of the MPAM-ID, as well as the weak, latent variance-covariance, and latent mean invariance across linguistic versions. Additional results supported the partial strong and strict invariance of most MPAM-ID items across linguistic versions. The results also supported the complete measurement invariance of the MPAM-ID over time and revealed a lack of differential item functioning (DIF) as a function of youth's age, body-mass index (BMI), ID level, and frequency of sport involvement (FSI). However, partial DIF was found as a function of youth's sex. Additionally, latent mean differences in MPAM-ID's factors were found as a function of youth's ID level, sex, and FSI. Finally, results supported the convergent validity of the MPAM-ID factors with a measure of perceived physical abilities. The MPAM-ID can be used among English- and French-speaking youth with ID irrespective of their age, BMI, ID level, sex, and FSI. We propose English and French adaptations of the Motives for Physical Activity Measure for Youth with Intellectual Disabilities (MPAM-ID). The MPAM-ID was able to identify the same motives as the original measure. The MPAM-ID will facilitate the assessment of motives for physical Activity in cross-sectional and longitudinal studies. The MPAM-ID will facilitate the assessment of motives for physical Activity among English- and French-speaking youth with ID. The MPAM-ID could be used to compare youth motives for physical Activity as a function of their age, body-mass index, ID level, and frequency of sport involvement. [ABSTRACT FROM AUTHOR]

Students with disabilities continue to experience barriers to accessing tertiary (i.e., postsecondary) education in Australia. Using the principles of Universal Design for Learning (UDL) may help educators proactively address barriers through the design of more accessible and inclusive educational experiences. However, at present, references to UDL appear in only a small number of Australian educational policies and tertiary institute websites, and few tertiary educators use UDL in practice. In this article, we describe how a team of educators, learning designers, accessibility advocates, and people with disabilities from multiple institutions across Australia collaborated to co-create a free, accessible eLearning program to build workforce knowledge and skill in UDL. We first describe how the advisory group was established, how the Knowledge to Action cycle was used to guide the activities of the advisory group, and the evaluation framework that was used to assess the outcomes of the eLearning program. We share potential future activities to raise awareness of UDL and influence policy and practice in local contexts and propose directions for future work in this area. [ABSTRACT FROM AUTHOR]