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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]

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]

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]

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]

Background: Due to developments in health and social care, people with profound intellectual and multiple disability (PIMD) are living longer than ever before, meaning they are increasingly experiencing life-threatening health conditions requiring palliative care. Little is known about providing end-of-life care for people with PIMD. The aim of this study was to explore health practitioners' perspectives and practices relating to end-of-life decision-making and planning for people with PIMD. Methods: Seven in-depth semi-structured interviews were conducted with health practitioners employed in a range of hospital and community services throughout Melbourne, Australia. Questions were designed to gather information about their experience, perceptions, and attitudes relating to people with PIMD during and at the end of their life. Each interview, ranging from 40 to 60 min in length, was audio recorded and transcribed. Inductive thematic analysis was used to analyse the data. Results: Four main themes emerged: limited participation, bias, dignity, and quality of death. Health practitioners indicated that people with PIMD are frequently excluded from participating in decision-making related to end-of-life care. Participants discussed reasons for this exclusion including challenges with communication and cognition. Participants reported a need for additional support and guidance in providing care for people with PIMD at the end of life. Professional and family bias played a role in end-of-life decision-making for people with PIMD. Participants reported a disproportional focus by palliative care practitioners on physical as opposed to emotional and spiritual well-being for patients with PIMD at the end of life. Finally, participants reported that people with PIMD generally did not die in specialised palliative care settings, but in segregated supported living environments. Conclusions: Due to negative perceptions of a person with PIMD's decision-making capacity, people with PIMD are likely to be assessed as unable to express choice and preference regarding end-of-life care and are offered limited opportunity to be involved in their own end-of-life care. This research provides guidance for the development of training and professional development relating to people with PIMD at the end of life. It is hoped that this will increase the accessibility of end-of-life services for people with PIMD, ensuring that a respectful and dignified death can be a reality for all humankind regardless of disability. [ABSTRACT FROM AUTHOR]

Objective: During the last 50 years there have been significant improvements in life expectancy among people with intellectual disability (ID), and so their incidence of age-associated diseases, such as cancer, is rising. The aim of this study was to compare the rate of cancer in people with ID with that found in the general population., Methods: Information on 9409 individuals registered with the Disability Services Commission of Western Australia was linked to the State Cancer Registry, with 200 cases of cancer detected over 156,729 person-years. Standardised incidence ratios (SIRs) and 95% confidence intervals were calculated for both sexes separately by 5-year age groups for the period 1982-2001. The same procedures were adopted in the estimation of SIRs for specific types of cancers., Results: The age-standardised incidence of all cancers in people with ID was not significantly different from the general population. However, males with ID were observed to have a significantly increased risk of leukaemia, brain and stomach cancers, and a reduced risk of prostate cancer, while leukaemia, corpus uteri and colorectal cancers were significantly higher in females., Conclusions: Health practitioners need to be aware that with improvements in life expectancy the incidence of cancer in people with ID is likely to rise. More proactive health promotion campaigns may be needed for people with ID, who are likely to be poor users of screening services and whose symptoms may not be reported until they are in more advanced, less treatable stages of disease.

Adverse consequences facing accused persons found unfit to stand trial in Australia have been well-publicised in recent years. Those found unfit may face indefinite detention in prison or other secure settings -- potentially for longer than if they had been convicted and sentenced. Indigenous people with cognitive disabilities appear to face particular disadvantage in this area of criminal law. Reform initiatives have brought attention to the issue, as has the coming into force of the United Nations Convention on the Rights of Persons with Disabilities. Under the UNCRPD, unfitness to stand trial laws may currently violate the rights of persons with disabilities to equal recognition before the law, access to justice, and liberty and security of the person. Particular concerns have arisen from the call for equal recognition of legal capacity and the right to support to exercise legal capacity on an equal basis with others. This article will consider the demands of the UNCRPD on unfitness to stand trial laws in Australia in the broader context of disadvantage facing persons with cognitive disabilities in criminal law. [ABSTRACT FROM AUTHOR]

The article describes the use of evidence-based smoking cessation aids and offered to a population of psychiatric inpatients upon discharge as well as explores factors associated with their uptake. Topics discussed include psychiatric inpatient settings representing an opportunity to initiative the provision of tobacco cessation care to smokers with a mental illness. Also mentioned are most smokers with mental illness taking up a proactive offer of aids to support their stopping smoking.

Introduction. We aimed to describe perceptions of Australian emergency clinicians of differences in management of mental health patients in rural and remote Australia compared with metropolitan hospitals, and what could be improved. Methods. Descriptive exploratory study using semi-structured telephone interviews of doctors and nurses in Australian emergency departments (EDs), stratified to represent states and territories and rural or metropolitan location. Content analysis of responses developed themes and sub-themes. Results. Of 39 doctors and 32 nurses responding to email invitation, 20 doctors and 16 nurses were interviewed. Major themes were resources/environment, staff and patient issues. Clinicians noted lack of access in rural areas to psychiatric support services, especially alcohol and drug services, limited referral options, and a lack of knowledge, understanding and acceptance of mental health issues. The clinicians suggested resource, education and guideline improvements, wanting better access to mental health experts in rural areas, better support networks and visiting specialist coverage, and educational courses tailored to the needs of rural clinicians. Conclusion. Clinicians managing mental health patients in rural and remote Australian EDs lack resources, support services and referral capacity, and access to appropriate education and training. Improvements would better enable access to support and referral services, and educational opportunities. [ABSTRACT FROM AUTHOR]

People with intellectual disability face a range of challenges on their release from prison due both to their own needs and the complexity of the service delivery system, which can make effective service delivery difficult. This difficulty is exacerbated by the sometimes combative nature of relationships between service providers. These issues could be addressed, at least in part, by improved training and stricter guidelines for those working in the sector. Representatives of disability and justice-related agencies in Queensland and Western Australia were interviewed for this research. The findings will be useful to policymakers and those who work in corrections, disability support and related sectors. [ABSTRACT FROM AUTHOR]

Little is known about how people with intellectual disability understand personal safety, or what strategies they call upon when they do not feel safe in their homes. In this participatory research, 20 people with intellectual disability talked about the ways they keep themselves safe in the places where they live, and what helps them or makes it hard for them to stay safe. Interviews with nine disability policy-makers were also conducted to include a systemic perspective about how personal safety is addressed by funded disability support services. A series of factors either support people or make it difficult for them to put their strategies into action, influencing the degree to which they were able to draw upon their own strategies to protect themselves from potential harm. [ABSTRACT FROM AUTHOR]

Objective: To describe the roles that Australian nurses play, the breadth of skills that they deploy, and the range of contexts in which they practice. Study design and methods: This cross-sectional study used a descriptive survey where data were collected online using Qualtrics©. Survey respondents were nurses whose primary role was caring for people with intellectual and developmental disability. In addition to demographic data, the main outcome measures were: nursing roles, practice and context. Results: Complete responses were collected from 101 nurses; 78 females and 22 males completed the survey, the majority of whom (n=70) were from New South Wales. The major focus of care was direct assessment and care, followed by supervision of support workers, education, and advocacy for people with intellectual and developmental disability. Physical healthcare was consistent across body systems, as it was for all adaptive behaviour domains. Support for mental illness was more likely to be for depression and anxiety. Nurses liaise with a multitude of health and social agencies as part of their nursing practice. Discussion: This is the first study to capture the roles, practice and contexts of these Australian nurses. Nurses caring for people with IDD play a variety of roles and engage in a vast array of practice related to the physical and social needs of people with intellectual and developmental disability across the whole of the lifespan and in multiple, disparate contexts. Conclusion: It is important for the ongoing care of people with intellectual and developmental disability that the value added by this nursing workforce not be overlooked as disability and health policies evolve. Implications for research, policy and practice: This cross sectional study lays the groundwork for further research about these Australian nurses, in particular more focussed research about the economic benefits of disability services employing nurses, description and effect of nursing interventions specific to people with intellectual and developmental disability, as well as theoretical work to conceptualise new, National Disability Insurance Scheme-ready, models of nursing care for people with intellectual and developmental disability. What is already known about the topic? * In the Australian context, little is known about the contemporary roles and practice of nurses who care for people with intellectual and developmental disability. What this paper adds: * This paper offers a detailed and modern insight into the roles and nursing practice of this marginalised group of nurses. Although all nurses offer physical nursing care, unique to these nurses is the breadth and depth of social, behavioural, emotional and adaptive behaviour support across the lifespan. [ABSTRACT FROM AUTHOR]

Introduction: The life expectancy for people who experience mental illness is between 10-32 years less than the general population. Untreated metabolic syndrome is the major contributing factor. Australia's federally funded universal health system 'Medicare' does not allow for the provision of primary health care services within State funded services. Private primary health services model design may not meet the needs of people who experience severe mental illness. This can lead to physical/mental health service integration challenges. Problem statement: How do you develop an integrated physical/mental health service stream to meet the needs of people who experience severe mental illness? Short description of practice change implemented, aim target population and key stakeholders involved: Hornsby GP Clinic (The Clinic) is located at State funded, Hornsby Hospital located within Northern Sydney Local Health District (NSLHD). The clinic was established prior to the introduction of Medicare and was 'grandfathered' and able to continue to provide Medicare funded GP services. In 2014, the Hornsby Mental Health GP Clinic pilot project was developed utilising a Change Theory model. It is a partnership between The Clinic, Hornsby Hospital, Hornsby Ku-Ring-Gai Mental Health Service (HKMHS) and Primary and Community Care Services' (PCCS) North Sydney Partners in Recovery (NSPIR) program. The aim of the pilot project is to: ~ provide integrated physical/mental health care to consumers of HKMHS. ~ Facilitate culture change amongst GP registrars, consumers, carers and clinicians Funding provided by NSPIR included: ~ 0.2 FTE Clinical Nurse Specialist position to provide clinical support including appointment attendance, clinic coordination, shared record keeping/communication processes and to support GP Registrar and HKMHS clinician culture change ~ Funding includes 'did not attend' appointment costs ~ 0.2 FTE Peer Support Worker to support consumer culture change Timeline: Phase 1: October 2014 - October 2015 pilot establishment/development Phase 2: November 2015 - December 2016 built upon expected and unexpected outcomes from Phase 1 with a focus of culture change strategies. Includes the recruitment of a Peer Worker Position and evaluation scoping Phase 2 includes additional partners/stakeholder Sydney Home Nursing Service to facilitate community based continuing care planning. Highlights, Conclusions and Key Findings: Whilst the pilot is yet to be formally evaluated, outcomes to date include: ~Significant increase in access to The Clinic and follow up care by HKMHS consumers ~ improved health outcomes ~ unexpected outcomes that led to Phase 2 pilot development including, HKMHS clinicians supporting consumers to access GP services outside of the MH GP Clinic operational hours and HKMHS consumers independently accessing The Clinic outside of the MH GP Clinic operational hours. Sustainability and Transferability: Consumer, carer, GP registrar and clinician education and culture change will support continued independent access of The Clinic post finalising of the pilot and influence future GP service model design to meet the needs of people who experience mental illness. Potential to influence future policy making. Conclusions, Discussions and Lessons Learnt: The integration of physical and mental health service delivery leads to improved holistic health outcomes and a culture change that can be led by consumers [ABSTRACT FROM AUTHOR]

Background Courses such as Mental Health First Aid equip members of the public to perform appropriate helping behaviours towards people experiencing a mental illness or mental health crisis. However, studies investigating the general public's knowledge and skills in relation to assisting a person with a mental illness are rare. This study assesses the quality of mental health first aid responses by members of the Australian public using data from a national survey. Methods Participants in a national survey of mental health literacy were assigned one of six vignettes (depression, depression with suicidal thoughts, early schizophrenia, chronic schizophrenia, social phobia or post-traumatic stress disorder) and asked an open-ended question about how they would help the character in the vignette. The 6,019 respondents were also asked if and how they had helped a person in real life with a similar problem. Responses to these questions were scored using a system based on an action plan developed from expert consensus guidelines on mental health first aid. Results The quality of responses overall was poor, with participants scoring an average of 2 out of 12. The most commonly reported actions for both questions were listening to the person, providing support and information and encouraging them to seek appropriate professional help. Actions such as assessing and assisting with crisis were rarely mentioned, even for the depression with suicidal thoughts vignette. Conclusions The quality of the Australian public's mental health first aid knowledge and skills requires substantial improvement. Particular attention should be given to helping people recognise that anxiety disorders such as social phobia require professional help and to improving responses to a suicidal person. [ABSTRACT FROM AUTHOR]

The article discusses the proposal to develop soft-law and/or policy initiatives to assist intellectually disabled consumers in Australia. It highlights the advantages and limitations of the existing common law and legislative instruments. The importance of the elements of power, support and advocacy in soft law and policy instruments are explained.

The article discusses the issue of access and equity in higher education for people with mental health difficulties in Australia. It states that government funded universities have access and equity policies and programs to assure students with mental condition that they will be treated fairly. However, findings of an exploratory study at an Australian university revealed that two thirds of the fifty four students did not confide about their problems to the staff due to fear of discrimination at university and in future employment.

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Established in 1887, Kew Cottages was Australia's oldest and largest specialised institution for people with intellectual disability. Kew Cottages was originally designed as a place of benevolent care and education for children. However, its secluded location, adjacent to a 'Lunatic Asylum,' and its use of physical security measures resulted in its reputation as a place of incarceration. This viewpoint emerged through oral history testimony collected as part of the Kew Cottages History Project during 2005-08. Oral histories, which were recorded from people closely associated with Kew Cottages, reveal that despite the introduction of reforms in the mid-twentieth century to accord residents greater freedoms, poor living conditions, strict regimentation, violence, and abuse, all contributed to a prison-like environment within the institution. [ABSTRACT FROM AUTHOR]

Substantial changes to mental health law and policy have occurred throughout the Western world during the last decade. The drift towards control, particularly in the form of Community Treatment Orders (CTOs), has profound implications for the role of mental health social workers, yet this issue is rarely discussed in academic literature. This paper seeks to redress this gap in knowledge by examining aspects of law, policy and practice using three case studies: Victoria, Australia; Ontario, Canada; and regions of the UK. The paper begins by critically reviewing selected literature on CTOs, revealing competing claims about efficacy and their impact upon service users and practitioners. A discussion of policy and practice contexts in the three jurisdictions is then presented and supported with a typology, to illustrate contrasts and comparisons. In their conclusions, the authors assert that mental health social workers often have a crucial part to play in the implementation of CTOs but that this is not always acknowledged in law and organizational policy. Social workers' roles and responsibilities need to be more explicitly identified in mental health law. At the same time, there should be a continuing debate about how such coercive powers fit with codes of ethics and practice standards, at national and international levels. [ABSTRACT FROM AUTHOR]

The article reports on the study conducted by the Australian Institute of Criminology regarding the intellectual disability of the people in Australia who had become victims of crime scored significantly below the intellectually disabled nonvictims on measures of interpersonal competence. It reveals that Intelligence Quotient (IQ) does not have relevance for predicting who will become victims of crime. Also noted are the two studies that were made of precipitating factors which may contribute to the criminal exploitation of individuals with an intellectual disability.

Objectives: Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual disability admitted to two tertiary state-wide children's hospitals and a children's palliative care centre; to describe and understand these factors to modify the Australian Patient Safety Education Framework to meet the particular needs for children and young people with intellectual disability., Design, Setting and Participants: Parents of children with intellectual disability from two paediatric hospitals and a palliative care unit participated in semi-structured interviews to elicit their experiences of their child's care in the context of patient safety. Thirteen interviews were conducted with parents from various backgrounds with children with intellectual, developmental and medical diagnoses., Results: Eight themes about safety in hospital care for children and young people with intellectual disability emerged from thematic analyses: Safety is not only being safe but feeling safe; Negative dismissive attitudes compromise safety, quality and care experience; Parental roles as safety advocates involve being heard, included and empowered; Need for purposeful and planned communication and care coordination to build trust and improve care; Systems, processes and environments require adjustments to prevent patient safety events; Inequity in care due to lack of resources and skills, Need for training in disability-specific safety and quality issues and Core staff attributes: Kindness, Patience, Flexibility and Responsiveness. Parents highlighted the dilemma of being dismissed when raising concerns with staff and being required to provide care with little support. Parents also reported a lack of comprehensive care coordination services. They noted limitations within the healthcare system in accommodating reasonable adjustments for a family and child-centred context., Conclusions: The development of an adapted Patient Safety Education Framework for children with intellectual disability should consider ways for staff to transform attitudes and reduce bias which leads to adaptations for safer and better care. In addition, issues that apply to quality and safety for these children can be generalised to all children in the hospital., Patient and Public Contribution: Parent advocates in the project advisory team were shown the questions to determine their appropriateness for the interviews., (© 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Purpose: Promoting the labour integration of people with functional diversity is a key element to achieve their social inclusion. This meta-analysis aims to examine the effectiveness of experimental programs in developing employable skills for people with disabilities. Methods: Literature searches up to June 2019 were conducted in four databases (Web of Science, Scopus, PsycINFO and ERIC). Studies that met the following criteria were selected: (1) The program should develop employable skills; (2) the participants should be people with functional diversity; (3) the study should have a design with an experimental group and a control group as well as pretest and posttest measurements; (4) the study had to provide enough data to calculate the effect sizes; and (5) the study had to be written in English or Spanish. 67 independent studies met the selection criteria, among 14 articles published between 1998 and 2019. Results: The results revealed mean effect sizes in favour of the experimental group for the set of all studies according to data reported by people with functional diversity, as well as according their relatives and teachers. The two dimensions of the programs with a significant effect size in favour of the experimental group were interview skills and career planning. Furthermore, it was found that the programs showed a higher degree of effectiveness in groups formed only by people with intellectual disabilities, with a lower educational level, whose duration ranged from six to twelve months. This was particularly the case with participants from Spain and Australia. Conclusion: Promoting the labour insertion of people with disability is a key element to achieve their social inclusion. Programs that support and develop employability and that are conducted upon experimental conditions do have a positive impact upon young people with functional diversity. Upon the results, we discuss practical implications for integrating disabled persons into the labour market. [ABSTRACT FROM AUTHOR]

Children with disabilities in out-of-home care (OOHC) are an overrepresented group in Australia, yet little is known about their circumstances, needs, and experiences within OOHC. Utilising a systematic scoping review methodology, we explored the state of knowledge about the experiences of children and young people with a disability in out-of-home care in Australia. Findings in this review speak to the unmet needs and challanges that children with disabilities face in child welfare systems and how systemic failures can lead to institutional pipelines of further maltreatment, adversity, and marginalisation. The review discusses the key themes in the literature, including (i) compounding trauma and placement failures, (ii) concerns of safety, stability, and neglect, (iii) limited control and choice, and (iv) disability and multisystem involvement. [ABSTRACT FROM AUTHOR]

The article examines the Australia mental health's compliance with requirements of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). It reports that the provisions of the CRPD requires states parties to replace involuntary treatment provisions in mental health laws with a new model of supported decision-making.

Health checks have beneficial effects on health outcomes in adults with intellectual disability; however, little is known about their effect on people with Down syndrome. The aim of this study was to assess the effect of receiving a health check on the unmet health needs of people with Down syndrome. A pooled analysis of three randomized trials conducted by the same Australian research team was undertaken. The trials used the same tools but differed by participant source (adults in 24 h supported accommodation, adults in private dwellings, adolescents living with parents). The intervention was a one-off health check, and the comparator was usual care. Among 216 participants, health actions were more likely to occur for those allocated to receive health checks, including increased hearing (odds ratio = 4.4; 95% confidence interval: 1.2, 16.4), vision (2.7; 1.1, 6.7), and thyroid (2.3; 1.3, 4.2) testing, and weight recording (4.7; 2.5, 8.8). Health checks conducted at the primary-care level produced substantially increased attention to the health needs of people with Down syndrome. [ABSTRACT FROM AUTHOR]

Housing and future planning have been key areas of interest in intellectual and development disabilities research for a number of decades. However, the voices of adults with intellectual disabilities are underrepresented in this area of research. Furthermore, the use of inclusive research methods remains limited in the literature. This study sought to pilot the use of inclusive research approaches to investigate the viability of these methods and to begin to build an evidence base of inclusive research in this area of work. Inclusive data analysis and co-authorship approaches were used on a small qualitative dataset from a larger study investigating future planning and transitions out of the family home by adults with intellectual disabilities and their families in Australia. Three semi-structured interviews with adults with intellectual disabilities and family members regarding their housing preferences and planning were analysed using an inclusive data analysis approach following the principles of Interpretative Phenomenological Analysis. These were then further analysed using a plain language version of the housing pathways framework. The results of the pilot study will be used to inform the inclusive research methods used for the remainder of the project dataset. Overall, the use of inclusive methods to pilot a conceptual model to better understand qualitative data was found to be feasible. Small adjustments to the process and accessibility to better support engagement with the research process are recommended. Lastly, greater investigation into co-authorship approaches and options is suggested as a fruitful avenue of inquiry for future research. [ABSTRACT FROM AUTHOR]

This paper examines retirement by older workers with intellectual disability. Much research and intervention about retirement and intellectual disability in the last decade or so emanates from Australia, although there are some current cross-sectional and descriptive studies from other developed countries. The Australian literature stands out as the forerunner in the development and controlled evaluation of interventions to support the process of preparing for, practising, and then experiencing retirement. Therefore, this paper begins by briefly describing retirement-related aspects of employment for people with intellectual disability in Australia. Next, we present a critical summary of Australian research on the retirement of people with intellectual disability, supported by a briefer analysis of international literature. Then, key issues, such as financial factors, age of retirement, the time course of retirement (sudden or gradual), and self-determination regarding the decision to retire, are explored. Finally, to help guide future research and policy, we identify a number of retirement-related research questions that are currently under-researched or unexamined. [ABSTRACT FROM AUTHOR]

Many young people in the criminal justice systems of both Australia and Aotearoa New Zealand will have cognitive disabilities and neurodiversity, and substantial challenges arise in efforts to provide services that will adequately meet their needs. This is despite the introduction of funding models based on an assessment of individual needs (rather than block funding to organisations). In this narrative scoping review, we argue that justice agencies will need to partner with specialist disability support services if they are to meet the needs of those in both custodial and community settings. This requires knowledge of the nature and prevalence of disability in the youth justice population, awareness of available service responses and the development of skills to engage young people in services and programmes that will support rehabilitation and community inclusion. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic has had a significant impact on the wellbeing of children and families globally. With extended lockdown periods, early childhood education and school closures, and remote learning, families experienced increased stress and anxiety, financial hardship, and disrupted routines. This paper aims to explore associations between children's social-emotional wellbeing and environmental factors (including the burden of COVID-19 on the family, early learning experiences in the home and early childhood education, and parent wellbeing and mental health) during COVID-19 in Australia and Germany, two countries that experienced significant lockdown periods. Using a longitudinal online survey design, parents of young children (aged 1–6 years) in Australia (N = 66) and Germany (N = 53) completed surveys on their own wellbeing; their child's wellbeing; the home learning environment, and their satisfaction with early childhood education and care at two time points in 2020 and 2021. The burden of COVID-19 mitigation measures on families' everyday lives correlated with child wellbeing outcomes in both the Australian and German cohorts. Findings also provide evidence of potential protective factors of children's social-emotional wellbeing during stressful events, such as the lockdowns experienced by families in Germany and Australia during the pandemic. [ABSTRACT FROM AUTHOR]

Men's sheds are a community-based organisation that allows a space for a community of men to interact and engage with one another with hands-on activities. As such, men's sheds form an appropriate setting to deliver health and wellbeing initiatives. This review aims to understand the role of Australian men's sheds with respect to the health and wellbeing of their male participants. This review was conducted in accordance with the preferred reporting items for systematic reviews and meta-analysis (PRISMA) following a three-step process of planning, conducting, and reporting the review. All three authors reviewed all the eligible articles. There was significant methodological heterogeneity between the sources identified (n = 11). A narrative synthesis identified three key themes: health promotion, wellbeing, and socialisation; intergenerational mentoring; and Aboriginal and Torres Strait Islander men's health. Men's sheds serve as ideal locations for the delivery of initiatives that can positively impact on the health and wellbeing of their male participants. Furthermore, research is needed to explore the implementation and evaluation of these health and wellbeing initiatives for men in their respective communities. [ABSTRACT FROM AUTHOR]

Children with intellectual and developmental disabilities are often over-represented in child protection and out-of-home care services. Despite this fact, little is known or understood about their experiences with these services. This scoping review seeks to identify the published literature about children with intellectual and developmental disabilities who are engaged with child protection and out-of-home care services. Findings from the 18 studies included in this review show that these children are at increased risk of entering the child protection and out-of-home care system, with outcomes that do not fare as favourably as their nondisabled peers. This is largely due to a lack of support, training, and resources for the children, their families, and carers. Placement failure was a common theme with residential care more likely for children with greater complexity and support needs. These children are understudied, with more research needed to better understand the factors that contribute to their experiences. Greater insights into how a child protection and out-of-home care pathway can be avoided, via the provision of adequate services and supports, are also urgently needed so that fewer children are placed at risk in a system where poor outcomes are common. [ABSTRACT FROM AUTHOR]

Background: To inform healthcare planning and resourcing, population-level information is required on the use of health services among young people with a mental disorder. This study aims to identify the health service use associated with mental disorders among young people using a population-level matched cohort.Method: A population-based matched case-comparison retrospective cohort study of young people aged ≤ 18 years hospitalised for a mental disorder during 2005-2018 in New South Wales, Australia was conducted using linked birth, health, and mortality records. The comparison cohort was matched on age, sex and residential postcode. Adjusted rate ratios (ARR) were calculated for key demographics and mental disorder type by sex.Results: Emergency department visits, hospital admissions and ambulatory mental health service contacts were all higher for males and females with a mental disorder than matched peers. Further hospitalisation risk was over 10-fold higher for males with psychotic (ARR 13.69; 95%CI 8.95-20.94) and anxiety (ARR 11.44; 95%CI 8.70-15.04) disorders, and for both males and females with cognitive and behavioural delays (ARR 10.79; 95%CI 9.30-12.53 and ARR 14.62; 95%CI 11.20-19.08, respectively), intellectual disability (ARR 10.47; 95%CI 8.04-13.64 and ARR 11.35; 95%CI 7.83-16.45, respectively), and mood disorders (ARR 10.23; 95%CI 8.17-12.80 and ARR 10.12; 95%CI 8.58-11.93, respectively) compared to peers.Conclusion: The high healthcare utilisation of young people with mental disorder supports the need for the development of community and hospital-based services that both prevent unnecessary hospital admissions in childhood and adolescence that can potentially reduce the burden and loss arising from mental disorders in adult life. [ABSTRACT FROM AUTHOR]

Individuals with autism spectrum disorder (ASD) experience significant barriers to employment. This study aimed to look at the support received by individuals with ASD in gaining and maintaining open employment from their perspective. A phenomenological approach was adopted with participants (n = 9) participating in semi-structured interviews. Thematic analysis identified four key themes; being supported, feeling successful, career progression and expectations. The findings suggest that individuals with ASD receive support from many different sources in their employment including supervisors, co-workers and parents. The support they received from disability employment consultants was more focused on obtaining a job rather than job maintenance or career progression. Career progression was rarely discussed by participants with their disability employment consultant, despite some evidence of poor job matches and unused qualifications and skills (reflecting a poor investment for individuals and society). Despite this, participants reported feeling successful due to having a job, having pride in their work, and feeling valued by co-workers. The study highlights the need for more research on understanding the longer-term support needs of people with ASD in open employment. Changes in policy to better resource and incentivize disability employment providers could produce more positive outcomes for people with ASD throughout their working lives. [ABSTRACT FROM AUTHOR]

The principle of 'working with, not on' people with disabilities is widely espoused within inclusive research, yet historically such opportunities have not been fully realized. This paper speaks from the perspective of users of health, rehabilitation, assistive technology services, and the academics with whom they collaborate. We draw on Australia's Disability Inclusive Research Principles to reflect on the practice of inclusive research across the areas of assistive technology policy, digital information, and health access, as well as the co-design of allied health resources. We consider and provide examples of how power and knowledge play out in health and rehabilitation, the developing discourse around consumer co-design and co-production, and the challenges of enacting inclusive research. This paper is about shared power in the mechanisms of research production and our journeys towards it. Engaging in inclusive research has enabled us to assume roles beyond the binary of the 'researcher' and the 'researched'. We conclude by proposing an adaptation of the ladder of participation for inclusive research. [ABSTRACT FROM AUTHOR]

Background: High-quality general practice has been demonstrated to provide cost-effective, equitable health care and improve health outcomes. Yet there is currently not a set of agreed comprehensive indicators in Australia. We have developed 79 evidence-based indicators and their corresponding 129 measures of high-quality general practice. This study aims to achieve consensus on relevant and feasible indicators and measures for the Australian context. Methods: This Delphi consensus study, approved by WSU Human Research Ethics Committee, consists of three rounds of online survey with general practice experts including general practitioners, practice nurses and primary health network staff. The identified indicators and measures are grouped under an attribute framework aligned with the Quadruple Aim, and further grouped under structures, processes and outcomes according to the Donabedian framework. Participants will rate each indicator and measure for relevance and feasibility, and provide comments and recommendations of additional indicators or measures. In the last round, participants will also be asked their views on the implementation of a quality indicator tool. Each indicator and measure will require ≥70% agreement in both relevance and feasibility to achieve consensus. Aggregated ratings will be statistically analysed for response rates, level of agreement, medians, interquartile ranges and group rankings. Qualitative responses will be analysed thematically using a mixed inductive and deductive approach. Discussion: This protocol will add to the current knowledge of the translation of performance guidelines into quality practice across complex clinical settings and in a variety of different contexts in Australian general practice. The Delphi technique is appropriate to develop consensus between the diverse experts because of its ability to offer anonymity to other participants and minimise bias. Findings will contribute to the design of an assessment tool of high-quality general practice that would enable future primary health care reforms in Australia. [ABSTRACT FROM AUTHOR]

While the importance of community researchers has long been acknowledged in disability studies, inclusive research practices such as these are less common in research about another marginalised group: people who are in prison or have spent time in prison. Over the past decade in Australia, the number and rate of people imprisoned has risen rapidly, and recidivism rates remain high, indicating a need for improved services. In this article, we draw on methodological reflections from two case studies on research with marginalised communities, one in disability studies and one in post-prison research. We apply insights from disability research to argue the importance of incorporating community researchers in qualitative research projects seeking to explore the experiences of people involved with the criminal justice system, such as people who have been released from prison. [ABSTRACT FROM AUTHOR]

Adults with intellectual disability have high health care needs. Despite frequent contact with health services, they often receive inadequate health care. One method to improve health care delivery is reasonable adjustments, that is, the adaptation of health care delivery such that barriers to participation are removed for the person with disability. A starting point for the provision of reasonable adjustments is recognition of intellectual disability during the health care contact. To determine rates and predictors of the recognition of intellectual disability during hospital admissions, and its impact on admission metrics, we examined a population of adults with intellectual disability identified from disability services datasets from New South Wales, Australia between 2005 and 2014. Recognition of intellectual disability was determined by the recording of an International Classification of Diseases 10th revision (ICD-10) diagnostic code for intellectual disability during a given hospital admission. We examined how recognition of intellectual disability related to length of hospital episodes. We found an overall low rate of recognition of intellectual disability (23.79%) across all hospital episodes, with the proportion of hospital episodes recognising intellectual disability decreasing from 2005–2015. Admissions for adults with complex health profiles (e.g., those with many comorbidities, those with Autism Spectrum Disorder, and those admitted for urgent treatment) were more likely to recognise intellectual disability, but admissions for adults with complexity in other domains (i.e., for those in custody, or those with drug and alcohol disorders) were less likely to recognise intellectual disability. Recognition of intellectual disability was associated with longer episodes of care, possibly indicating the greater provision of reasonable adjustments. To improve the recognition of intellectual disability for adults during health service contacts, we advocate for the implementation of targeted initiatives (such as a nationwide disability flag to be included in health service records) to improve the provision of reasonable adjustments. [ABSTRACT FROM AUTHOR]

The concern for the welfare of persons living with disabilities is not a new ethical or moral consideration for our society. Microboards are a relatively new development in Australia and operate to enhance supported decision-making through placing a supportive network of interested persons around an individual with impaired decision-making capacity to assist their realisation of wishes and support their needs. This article critically examines South Australia's laws which provide for disability support frameworks and argues that the current laws do not reflect best practice. The article considers whether microboards offer a potential solution to the many practical issues faced by persons living with disabilities. The potential legal, policy and practical issues associated with the use of microboards are identified and a number of recommendations for legal reform are proposed. With these reform measures implemented, a strong case is made that microboards can offer persons living with disabilities a significant increase in their quality of life and autonomy whilst simultaneously strengthening local communities and reducing government responsibility. [ABSTRACT FROM AUTHOR]

Background: In economic evaluation, the quality of life of people with a disability has traditionally been assessed using preference-based instruments designed to measure and value quality of life. To provide robust measurement of the effectiveness of programs designed to improve the quality of life of people living with a disability, preference-based measures need to be sufficiently sensitive to detect incremental changes in the quality of life dimensions that are most important to people who have a disability. This study sought to explore whether there was a difference in the ranked order of importance of quality of life dimensions between people with a disability and people without a disability.Methods: An online survey was developed and administered Australia wide. The first sample (n = 410) comprised adults (aged ≥ 18 years) with a disability (n = 208) and family carers of person/s with a disability who were asked to respond on behalf of the person with a disability (n = 202). The second sample included adults without disability (n = 443). Respondents were asked to rank the importance of 12 quality of life dimensions extracted from the content of established preference-based quality of life measures (EQ-5D, AQoL and ASCOT).Results: People with a disability placed relatively higher importance on broader quality of life dimensions (e.g. Control, Independence, Self-care) relative to health status focused dimensions (e.g. Vision, Hearing, Physical mobility). This distinction was less differentiable for those 'without a disability'. The biggest differences in ranked importance of dimensions were in: Vision ('with disability' = 10th, 'without disability' = 4th), Self-care ('with disability' = 3rd, 'without disability' = 7th) and Mental well-being ('with disability' = 6th, 'without disability' = 2nd).Conclusions: The relative importance of quality of life dimensions for people with a disability differs to people without a disability. Quality of life is a key outcome for economic evaluation and for assessing the impact of disability care policy and practice in Australia and internationally. It is important that the effectiveness of interventions is measured and valued in ways which are fully reflective of the quality of life preferences of people with a disability. [ABSTRACT FROM AUTHOR]

Background: Adolescents with disability are less active and have lower levels of physical fitness than their typically developing peers. Schools are ideal settings to address this; however, few school-based interventions have been designed and evaluated among this group. Therefore, the aim of this pilot study was to determine the feasibility of a time-efficient school-based physical activity intervention for adolescents with disability. Methods: A non-randomized pilot trial was conducted with adolescents in the special education unit at one secondary school in New South Wales, Australia. Sixteen grade 11 and 12 students (aged 17.3 ± 0.7 years) participated in the 2-month physical activity intervention. Two classroom teachers were trained to facilitate the delivery of a high-intensity interval training (HIIT) program, known as Burn 2 Learn adapted (B2La). Teachers were asked to deliver 2–3 weekly HIIT sessions for a period of 2 months. Four domains of feasibility (acceptability, implementation, adaptability, and practicality) were assessed using quantitative measures at the student and teacher levels (e.g., observations, process evaluation questionnaires, and heart rate [HR] monitoring). Data were also collected from three learning and support teachers who assisted classroom teachers with intervention delivery. Preliminary efficacy of the intervention on measures of adolescents' functional capacity (6-min walk/run test) and muscular fitness (sit-to-stand test and modified push-up test) were analyzed using paired sample t-tests. Results: Moderate-to-high levels of program satisfaction were reported by both students (80% rated "Good" or "Excellent") and teachers (100% rated "Good" or "Excellent"). Teachers reported delivering 2.5 ± 0.7 sessions per week during the study. Based on researcher session observations, the program was delivered effectively by teachers (14/20). However, HR data indicated session intensity was lower than intended. The program was considered "adaptable" by teachers, with several observed modifications to HIIT sessions to cater for the needs of adolescents with disability. No adverse events were reported. We observed improvements in preliminary efficacy measures. Conclusions: Our findings suggest it is feasible to train teachers to deliver a school-based HIIT program for adolescents with disability. Evaluation of B2La within a larger-scale effectiveness trial is warranted. Trial registration: ACTRN12621000219886. [ABSTRACT FROM AUTHOR]

Background: The connection between choice, control and health is well established in the literature on the social determinants of health, which includes choice and control of vital health and social services. However, even in the context of universal health and social care schemes, the ability to exercise choice and control can be distributed unequally. This paper uses the case of the Australian National Disability Insurance Scheme (NDIS) to examine these issues. The NDIS is a major policy reform based on an international trend towards personalisation in social care. It aims to increase choice and control over services and supports for people who have or acquire a permanent disability, thereby boosting citizen empowerment and improving health and social outcomes.Methods: The research is a structured review of empirical evidence on the administration and outcomes of the NDIS to identify how social factors constrain or enable the ability of individuals to exercise choice within personalised care schemes.Results: We show how social determinants of health at the individual level can collide with the complexity of policy delivery systems to entrench health inequalities.Conclusion: Many social policy reforms internationally focus on improving empowerment through enabling choice and control. However, if administrative systems do not take account of existing structural inequities, then such schemes are likely to entrench or grow social inequality. Our research indicates that more attention must be given to the design of policy delivery systems for personalisation schemes to ensure health equity. [ABSTRACT FROM AUTHOR]

The article focuses on discussion involve understanding of discrimination needs to take account of both systemic or institutional discrimination as well as overt acts of interpersonal discrimination experienced by people with disabilities. Topic include an agreement with Dr Kirkham that in order to help advance the human rights of people with disability a research focus on ‘discrimination and injustice is essential '.