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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]

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: 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]

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]

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. [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]

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. 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. 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. 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. [ABSTRACT FROM AUTHOR]

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]

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]

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]

Aim: To describe Australian registered nurses' awareness, and implementation of reasonable adjustments within their practice when caring for people with intellectual disability and/or autism. Additionally, the association between key demographic, workforce, and respondent variables and familiarity of the term and regularity of use was explored. Design Cross‐sectional survey. Methods: Survey data were collected between August and October 2020 using an online survey tool. Data were analysed using descriptive and inferential statistics. Results: Familiarity of the concept of reasonable adjustments was relatively low, compared to respondents who report applying adjustments when caring for people with intellectual disability and/or autism. Higher levels of confidence, comfort, and knowledge when caring for this cohort were associated with greater awareness and application of reasonable adjustments. Conclusion: A higher volume, and diversity in type of, nursing education related to care for people with intellectual disability and/or autism is indicated. [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]

Attitudes in Australia toward people with intellectual disabilities were investigated among students, disability services professionals, and the general population. Three previously validated questionnaires and a measure of respondent self-reported "social desirability" were used. Students and disability services professionals exhibited similar attitudes, with both groups reporting significantly more positive attitudes than members of the general population. More positive attitudes were evident among younger people, people with higher educational attainment, and individuals with a prior knowledge of or regular contact with people with intellectual disabilities. These respondents were less likely to support the principles of eugenics and more likely to support the paradigm of community inclusion. The authors make recommendations concerning the development of policies and strategies to foster the acceptance and inclusion of adults with intellectual disabilities in the wider community. Further studies that include the use of qualitative techniques and target people in the general population are recommended. [ABSTRACT FROM AUTHOR]

Context: Access to healthcare for rural Australians is a wicked problem, particularly for rural people with disability. Contemporary healthcare access frameworks in Australia tend to overlook geography, use a 'one‐size‐fits‐all approach', and disregard the valuable relationships between key rural healthcare stakeholders, including rural people with disability, rural health services and health professionals. The United Nation's Convention on the Rights of Persons with Disabilities requires the Australian Government to engage people with disability in the design of policies that will shape their day‐to‐day lives, including their access to healthcare. However, the nature and extent to which rural people with disability, rural health professionals and other key rural stakeholders are involved in the design of Australian policies impacting the health of rural people with disability are unknown. Aim: This paper examines approaches taken to engage rural people with disability and health professionals in the design of Australian disability policy impacting healthcare access, and reimagines future processes which can improve healthcare access for rural people with disability. Approach: Co‐design and ethics of care lenses are applied to policy design approaches in this paper. We approach this work as rural disability and health academics, rural health professionals, and as rural people with disability, neurodivergence and family members of people with disability. Conclusion: We argue future co‐designed policy approaches could focus on driving change towards equity in healthcare access for rural people with disability by harnessing the relational nature of rural healthcare. [ABSTRACT FROM AUTHOR]

Purpose: Negative nurse attitudes and emotions toward caring for adults with intellectual disability have been implicated as a contributing factor to the cascade of health disparities faced by this population. The purpose of this study was to identify influencing factors of nurses' attitudes and emotions toward caring for adults with intellectual disability that transcend national borders and differing systems of care. Methods: This cross‐sectional correlational predictive replication study used an online electronic survey with a snowball sample of 115 Australian nurses, from March to August 2020. Results: Nurses' attitudes toward adults with intellectual disability were significantly less positive compared to adults without intellectual disability, and nurses' beliefs about the quality of life of adults with intellectual disability predicted nurses' attitudes, replicating findings of the USA study. The frequency of both the professional and personal contact was associated with positive and negative emotions in both countries, however no consistent predictive pattern was evident. Conclusions: Our findings suggest that worldwide, there is room for improvement in nurses' attitudes and emotions toward this underserved group. Future research should investigate the role of nurses' beliefs about quality of life of adults with intellectual disability for potential interventions to improve nurses' attitudes toward care. Clinical relevance: Assisting nurses to identify misconceptions about the quality of life of adults with intellectual disability is suggested as an intervention to improve nurses' attitudes toward caring for adults with intellectual disability. [ABSTRACT FROM AUTHOR]

Background: Although a 'person‐centred focus' is a legislated objective for both aged‐care and disability services sectors in Australia, evidence suggests limited translation into systems and practices due to entrenched silos. This paper proposes a Best Practice Framework to mitigate these silos. Methods: Mixed‐methods research comprising key informant interviews with major stakeholders across both sectors; a survey of people with/without intellectual disability aged 60+ years; qualitative in‐depth interviews; and survey of health professionals. Results: There is an urgent need to develop inter‐sectoral 'integrated care systems'. Key components include choice in accommodation; regular assessment of health and well‐being indicators; development and adoption of nationally consistent policies/standards across integrated aged‐ and disability‐care sectors; improved strategies for workforce planning; and upskilling of existing staff including place‐based collaboration. Conclusions: An integrated service model requires collaboration on broader public policy instruments, appropriate planning and resourcing. A strategic shift is required to ensure better quality person‐centred support systems. [ABSTRACT FROM AUTHOR]

Background: Research suggests that adults with autism tend to have poor outcomes. Outcomes have mostly been defined using summary outcome ratings, with less focus on specific outcomes such as employment, living situation, social satisfaction, loneliness, and friendships. This study aimed to explore social and community outcomes, including employment, education, living arrangements, friendships, and social satisfaction, for autistic adults with and without intellectual disability. Method: Eighty‐four adults with autism (mean age 34.2 years, SD = 4.5; 67% with co‐occurring intellectual disability), recruited as children and adolescents, participated in the current study. Adult social and community inclusion outcomes were explored through interview and questionnaire, both parent/carer‐report and self‐report. Results: Participants predominantly lived with family or in supported accommodation, did not pursue higher education, and mostly participated in day activity programmes. Most had limited friendships as reported by parents/carers; however, self‐report data (n = 28) indicated that adults were largely satisfied with their social relationships. Overall outcome was poor for 57%, and good/very good for 34%. Adults with intellectual disability generally had poorer outcomes. Conclusion: Autistic adults encountered numerous difficulties in leading an independent life. Adults with co‐occurring intellectual disability were most likely to experience difficulties; however, outcomes ranged from poor to very good for adults without intellectual disability. Discrepancies in parent/carer‐report and self‐reported experiences of friendships highlight the need to ensure individual experiences are captured in addition to parent/carer‐report. Appropriate resources and programmes are crucial for adults with autism to support them to have the choice to live independently. [ABSTRACT FROM AUTHOR]

Purpose: People with intellectual disability (PWID) appear more likely to be victims and perpetrators of crime. However, extant evidence pertaining to these risks is limited by methodological weaknesses and the absence of consistent operational definitions. This research aimed to estimate the prevalence of criminal histories and victimisation using a large, well-defined sample of PWID.Methods: A case-linkage study was conducted comprising 2220 PWID registered with disability services in Victoria, Australia, whose personal details were linked with a state-wide police database. Criminal charges and reports of victimisation were compared to a non-disabled community comparison sample (n = 2085).Results: PWID were at increased risk of having a history of criminal charges, particularly for violent and sexual offences. Although the non-disabled comparison group had a greater risk of criminal victimisation overall, PWID had a greatly increased risk of sexual and violent crime victimisation.Conclusions: PWID are at increased risk of victimisation and perpetration of violent and sexual crimes. Risk of sex offending and victimisation is particularly elevated, and signalling the need for specialised interventions to prevent offending and to ensure victims is assisted with access to justice, support, and treatment. [ABSTRACT FROM AUTHOR]

People living with intellectual disabilities have a right to be safe from abuse and neglect and have a right to be included in the decision-making process determining safeguards that will affect them. However, the research evidence that could underpin good professional practice in terms of co-producing safeguards against abuse and neglect directly involving people with intellectual disabilities is largely missing. This article, based on qualitative research involving semi-structured interviews conducted during the first half of 2014, seeks to strengthen this evidence base. It reports on the prevention strategies identified by 12 adults with intellectual disabilities about how to stay safe and compares these with the findings of similar research. The article suggests that a comprehensive safeguarding approach comprises both life course-focused safety training and access to assisted decision-making. The article argues that given the plethora of risk situations encountered by people living with intellectual disability, assisted decision-making should take the form of a co-creation process that is situation specific and grounded in everyday life. [ABSTRACT FROM PUBLISHER]

Purpose: Disability acquisition in adulthood is associated with deterioration in mental health. Social support may act as a "buffer" against poor mental health following disability acquisition. We tested the hypothesis that women and men with low social support experienced larger declines in mental health on acquisition of a disability compared to women and men with high social support.Methods: We assessed whether social support, measured both prior and subsequent to disability acquisition, modified the association between disability acquisition and mental health using 14 annual waves of data from the Household, Income and Labour Dynamics in Australia Survey. Participants reported at least two consecutive waves of disability preceded by at least two consecutive waves without disability (2200 participants, 15,724 observations). Fixed-effects linear regression models were used to estimate average differences in mental health between waves with and without disability, for women and men separately. We tested for effect measure modification of the association by social support, including a three-way interaction between disability and social support prior and subsequent to disability acquisition.Results: Though the effects of disability acquisition on mental health were much larger for women, for both women and men there was a consistent pattern of association with social support. There was evidence that social support modified the association between disability acquisition and mental health, with the largest effects for those experiencing a change from high to low social support subsequent to disability and for people with consistently low social support.Conclusions: These findings highlight the importance of developing new policy and practice strategies to improve the mental health of people with disabilities, including interventions to promote social support at the time of disability acquisition. [ABSTRACT FROM AUTHOR]

BackgroundParenting by people with intellectual disability is attracting increasing attention, and policymakers and service providers require empirical evidence to develop sound policy and service responses. The purpose of the study was to identify prevalence and demographic data on parents with ID in Australia compared with parents with other disabilities and the population of parents without disability. MethodThe Survey of Disability, Ageing and Carers, 2009, was identified as the most suitable survey, and design-weighted analysis was performed. ResultsAn estimated 0.41% of Australian parents had intellectual disability, equating to 17,000 parents with ID. Parents with ID were more likely to have only 1 child and to reside outside a capital city compared with parents without disability. ConclusionsThese findings provide benchmark data for monitoring, over time, the prevalence of parents with ID and point to policy and service responses for parents with only 1 child and for those in outer urban, regional, and rural areas of Australia. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to provide a commentary on the article "Participation of Learning Disabled People in the Parliamentary Election of 2019 in the United Kingdom". Design/methodology/approach: Personal experience of advocating in Australia for the rights of people with learning disabilities to vote and to receive the necessary support to do so. Findings: People with learning disabilities have persistently been excluded from political participation. This is an abuse of their human rights. Originality/value: There are many barriers to the political participation of people with learning disabilities, and advocacy on a number of fronts will be necessary to achieve change. [ABSTRACT FROM AUTHOR]

Dedifferentiation represents the merging of the wider "intellectual disability" category with the broader one of "disability" generally; a product of the ascendance of the social model of disability. The recent re-emergence of the significance of impairment and embodiment in disability theory re-establishes the importance of situated experience and reinserts realities of difference in the dedifferentiation/difference debate. This paper highlights these issues by exploring the experiences of people with Profound Intellectual and Multiple Disabilities (PIMD) and their decision-making supporters in the context of the National Disability Insurance Scheme (NDIS) in Australia. Lived experiences accessing, planning for, and implementing NDIS supports illustrate some limitations of dedifferentiation in social services, highlighting the need for recognition of realities of embodied difference for people with PIMD. Here, our systems and theories are most uncomfortable, our ideals of inclusion are most challenged in practice, and some balance between realities of difference and ideals of dedifferentiation is most needed. [ABSTRACT FROM AUTHOR]

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

Deinstitutionalisation must extend beyond the closure of institutions to individualised support to people with intellectual disabilities and societal change. Castellani suggests that closure processes may be incompatible with effective deinstitutionalisation. This article draws on findings from two Australian studies of institutional closures to explore tensions in the closure process that occur in the policy context of applying managerialist principles to the delivery of services, and examines how these processes hindered or furthered the aims of deinstitutionalisation. It suggests closure can divert attention from planning for individualised support, the needs of staff may conflict with those of residents, transition plans may be disrupted by organisational imperatives and that little attention may be paid to broader community development strategies or micro‐level planning of the nature of staff support. The article reiterates the danger of equating institutional closure with deinstitutionalisation and the need to focus beyond the imperatives of closure. [ABSTRACT FROM AUTHOR]

Background News media frames public perceptions. As such, news media becomes a useful source of analysis to understand the presence (or otherwise) of people with disabilities, particularly intellectual disabilities, within parenting discourses in Australia. Method Using Critical Discourse Analysis, this article examines major Australian newspapers over the period from January 2004 to December 2008, critiquing the construction of parenting and disability. A small number of articles are examined in close depth for tone, polarity syntactic and paradigmatic choice, deconstructing the underlying discourses that shape the article and thereby popular perceptions of parenting and disability. Discussion Discourses of care and child protection are emphasized in news articles about parenting, creating perceptions that negate the role of people with disabilities as parents. Such perceptions result in a systematic symbolic castration of people with intellectual disabilities from the role of parent in Australian society. Conclusion By providing a framework for understanding the public perceptions of parents with disabilities (particularly intellectual disabilities), this paper demonstrates that changes are necessary in Australian media reporting on parents with disabilities to bring such reporting more closely in line with the United Nations Convention on the Rights of Persons with Disabilities, 2006. [ABSTRACT FROM AUTHOR]

Access to adequate, safe, secure, accessible and affordable housing is a fundamental human right and one stipulated in the United Nations Conventions on the Rights of Persons with Disabilities. Australian adults with disabilities experience housing disadvantage including homelessness, poor-quality housing and housing unaffordability; however, we lack a comprehensive comparison of the housing circumstances of people with and without disabilities and differences by impairment type. We analysed data from a nationally representative sample of 11,394 working-aged Australians collected in 2011. We found that people with disabilities experienced disadvantage across all housing indicators, and people with intellectual and psychological disabilities fared worst. These findings suggest that there is a housing crisis for Australians with disabilities, which may intensify with the introduction of the National Disability Insurance Scheme. There is a need to develop long-term housing solutions that promote independence, are accessible and affordable, and that consider location and neighbourhood context. [ABSTRACT FROM AUTHOR]

Purpose The purpose of this paper is to summarise the initial experiences of Australia’s National Disability Insurance Scheme (NDIS). It highlights some of the main challenges being faced by participants, service providers and government, and demonstrates how research can contribute to the ongoing implementation and success of the scheme.Design/methodology/approach The historical basis for the need for a new approach to disability funding in Australia is explored. The opportunities that exist and the difficulties that are being encountered by those entering and working within the new scheme are discussed.Findings Several problems were identified including difficult transitions between existing support frameworks to new “NDIS plans”, and the risk of market failure. Both the problems and their solutions are discussed and it is hoped that collaboration between the Commonwealth Government, service users, their families, service providers and universities can lead to a number of lasting improvements.Practical implications The new funding framework provides exciting opportunities for increasing the funding of people with intellectual and physical disabilities in Australia. Developments in technology, service provision in rural and remote areas and the opportunity to meet aspirational life goals exist alongside a number of challenges, including the need to ensure that those with multiple and complex disabilities retain existing levels of support.Originality/value The implementation of the NDIS is still underway, and opportunities exist to implement changes to the scheme where required. Research findings have an important role to play in the national debate regarding how best to improve quality of life for people with a disability in Australia. [ABSTRACT FROM AUTHOR]

A number of practice guidelines are available to set the benchmark for best practice when working with individuals with intellectual disabilities and co‐morbid mental health concerns. However, dissemination and implementation of such guidelines in the context of psychologists' work settings has received little attention. The aim of this qualitative study was to investigate adherence to current practice guidelines by Australian psychologists working with this specialist population and explore organizational factors that may facilitate or hinder evidence‐based practice implementation. Thirty‐eight Australian psychologists from government disability and non‐government disability organizations working primarily with individuals with intellectual disability participated in eight semistructured focus groups. Psychologists were presented with a summary of a current Australian practice guideline in dual disabilities and asked about their views of best practice adherence and implementation of the guideline including facilitative and hindering factors influencing implementation. Psychologists reported views consistent with current Australian best practice standards but noted a number of barriers impacting on adherence. Facilitators and hindrances to best practice implementation were discussed in relation to views on applicability of current guideline, organizational level considerations, organizational resources and training, organizational operations, and systemic considerations. Findings highlight the importance of a collaborative and systemic approach in order for practice guidelines to be effectively implemented for psychologists working with disabilities. Implications for policy development and training are discussed. [ABSTRACT FROM AUTHOR]

Background: General anaesthesia (GA) remains a vital modality to facilitate dental treatment for patients with special needs but there is limited literature to describe the types of patients requiring this form of care and the treatment they receive. Method: A cross-sectional clinical audit was conducted of patients treated under GA at the Day Surgery Unit of the Royal Dental Hospital of Melbourne during August 2015. Results: The majority of patients had an intellectual disability and were referred due to their inability to tolerate conventional dental treatment. These patients demonstrated high levels of treatment need requiring an average of two fillings and six extractions. Conclusions: Although these results demonstrate the value of GA in treating patients with intellectual disabilities, the level of treatment need identified raises concerns about current approaches to oral health for this cohort. Greater efforts are required towards preventive oral care for patients with special needs. [ABSTRACT FROM AUTHOR]

Background Down syndrome is one of the commonest causes of intellectual disability. As life expectancy improves with early and more intensive surgical and medical treatments, people with the disorder are more likely to exhibit classic morbidity and mortality patterns and be diagnosed with diseases such as cancer. Methods A profile of cancer cases among people with Down syndrome has been compiled, based on the analysis of a linked data set that included information from the Disability Services Commission of Western Australian and the State Cancer Registry. Results and conclusions Although the total age- and sex-standardized incidence ratios (SIRs) for people with Down syndrome were similar to that for the general population, SIRs for leukaemia were significantly higher while the incidence of certain other types of cancers was reduced. Overall, there was a lower incidence of solid tumours in Down syndrome, possibly reflecting the age profile of the study cohort. [ABSTRACT FROM AUTHOR]

This is a scoping review of literature on human resource management ( HRM) and management practice that impacts on workers with physical, mental health and intellectual disabilities, employed or entering paid employment. The aim is to illuminate the use of HRM practices, managerial attitudes and employee outcomes in the disability literature. The methodological research framework commenced with seven databases and was supported with evidenced-based literature to find three main themes. Themes highlight the management and employer support for workers with disabilities, discrimination and attitudes towards employment of this cohort of workers, and performance and employment outcomes. As governments around the world seek to reduce welfare costs and increase the employment of people with disabilities this paper is timely. Overall, the paper contributes to a dearth of literature on the management of people with disabilities at the workplace to unpack the key barriers, challenges and trends, and develop a comprehensive research agenda. [ABSTRACT FROM AUTHOR]

Background Requests for assistance in menstrual management and menstrual suppression are a common, emotive and sometimes controversial aspect of adolescent disability care. Aims To review the uptake and outcomes of menstrual suppression among adolescent patients with developmental delay. Methods A retrospective review of the medical records of adolescent females with intellectual disability referred for menstrual management to the Paediatric and Adolescent Gynaecology Clinic, Children's Hospital at Westmead, Sydney, for the three-year period between January 1, 2010 and January 1, 2013. Results Eighty adolescent patients with developmental delay were identified. A third ( n = 28) of the patients were pre-menarcheal at first review with parent/caregivers seeking anticipatory advice. Of the post-menarcheal patients, the median age of menarche was 12 years (range 10-15 years). First and second line interventions were documented as were reasons for change where applicable. The combined oral contraceptive pill ( COCP) was the most frequently used therapy (67%), and 19 patients in total had a levonorgestrel releasing intrauterine system ( LNG- IUS) inserted (31%). Our study population differs from similar previously published groups in the marked absence of the use of depot medroxyprogesterone acetate or the subdermal etonogestrel releasing device. Conclusion As a paediatrician, it is important to address menstrual management issues and allay caregiver concerns with appropriate advice. Our study supports the use of the COCP as sound first line management in achieving menstrual suppression. The LNG- IUS appears to be a favourable second line option. Further investigation into longer-term outcomes and potential complications of device insertion is recommended. [ABSTRACT FROM AUTHOR]

People with intellectual disability represent ~2-3% of the Australian population and experience elevated rates of mortality and morbidity compared with the general population. People with intellectual disability, and their families and carers, must keep track of extensive medical information while also managing turnover of paid staff, general practitioners and other health professionals, making them beneficiaries of Australia's new eHealth record system. Although they are key users, there is a lack of knowledge about the accessibility of the system for individuals with intellectual disability, or those responsible for managing their health information. This is a missed opportunity to improve the lives of an already overlooked group. This study aimed to identify the facilitators and barriers to registering for an eHealth record network for people with intellectual disability and those supporting them to manage their health information. We interviewed potential users of eHealth records, including four people with intellectual disability, three family members and two residential support workers. Our findings suggest that decision-makers involved in the roll-out of the eHealth record networks should incorporate 'reasonable accommodations' to improve accessibility for people with intellectual disability and those who support them to manage their health information. This includes identifying and eliminating the barriers to accessibility of eHealth records and taking appropriate measures to promote access to individuals with intellectual disability. People with intellectual disability and the people who support them are a diverse group with a range of abilities. The translation of their views into practice will help to improve the eHealth system for this and other vulnerable population groups. [ABSTRACT FROM AUTHOR]

People with intellectual disabilities (IDs) face significant health challenges, including poor outcomes, limited access to health care, and a 26‐year life expectancy gap compared with the general population. This highlights the need for improved public health and social policies to enhance the quality of care in hospital and community settings. An integrated literature review was conducted to examine the state of disability nursing practice in Australia following the implementation of the National Disability Insurance Support (NDIS) scheme. The review included English‐language studies published from 2010 to 2023. Systematic searches in five databases resulted in a final sample of 28 studies. The data were then thematically analysed, and the following three themes emerged: Workforce development and professional standards, hospital experience and support needs of individuals with IDs, and nursing curriculum and ID. Study findings suggest that nurses lack preparation for effective health communication with individuals with IDs and their families. Evidence is insufficient to guide nursing practice and policies in ID care. Varying understandings of practice standards exist among nurses. Nursing curriculums in Australia fail to adequately prepare students to manage the unique needs of individuals with IDs, perpetuating the high mortality rates in this population. Specialised nursing practice areas are vital for meeting the complex needs of individuals with IDs. Reintroducing a disability nursing specialty and integrating dedicated study units and clinical placements in undergraduate programmes are recommended steps to improve care outcomes and support the overall well‐being of this population. [ABSTRACT FROM AUTHOR]

The article focuses on Journal of Intellectual and Developmental Disability (JIDD) awards two prizes for the best research papers published in a print issue of JIDD during the International Research the other for Australasian Research.

This was significantly lower than the corresponding aggregate Australian figures from the National HPV Vaccination Program Register in 2015, with 77% of females and 66% of males completing the HPV course.[16] The importance of HPV immunisation for this population should not be dismissed. People with disabilities have a young age of sexual debut, are more likely to experience unwanted sexual activity and are less likely to utilise health care services than their typically developing peers.[[18]] Young people with disabilities are therefore at higher risk of both HPV disease transmission and progression than young people without disabilities. Human papillomavirus vaccination programs reduce health inequity in most scenarios: a simulation study. Human papillomavirus uptake in adolescents with developmental disabilities. [Extracted from the article]

The article presents a case study of a 65-year-old man with a mild intellectual disability with catatonic symptoms like decreased responsiveness and negativistic phenomena. Topics discussed include use of oral lorazepam and clonazepam for treatment of catatonia; use of electroconvulsive therapy (ECT); and use of parenteral lorazepam first-line treatment for catatonia.

In this case study we describe how Sydney Local Health District (SLHD) Disability Inclusion and Advice Service (DIAS) provided support to disability group homes during the COVID-19 Delta and Omicron waves. The study provides insights into group home providers' experience of supports implemented by SLHD and other stakeholders. A mixed method approach was undertaken that included analysing data from a database and electronic medical records and a survey of disability group home managers. DIAS developed a range of processes to support prevention, outbreak preparedness and response. This included developing a Disability Shared Living COVID-19 Pathway, engaging with group home providers through a fortnightly Community of Practice, assisting with improving vaccination status and procuring personal protective equipment. During an outbreak DIAS provided a 24 h, 7 days per week on call support, coordinated outbreak management team meetings and collaborated with several internal and external stakeholders. SLHD infection prevention and control nurses were recruited to undertake a process of reviewing outbreak management plans and providing support during an outbreak. Most disability providers (86%) reported that they felt very prepared to manage outbreaks at the time of the survey (August 2022) compared with the pre-Delta wave, for which 36% reported feeling 'not prepared'. The proportion who rated the support from the stakeholders as very supportive/supportive was as follows: SLHD (100%), NSW Health (64%), National Disability Insurance Agency (50%) and National Disability Insurance Scheme Quality & Safeguards Commission (37%). Our case study provides insights into the support that LHDs can provide to disability homes in response to future outbreaks. What is known about the topic? People with a disability (PWD) are at higher risk of morbidity and mortality following COVID-19 infection but little is known about how PWD were supported during the COVID-19 pandemic. What does this paper add? Describes one local health district (LHD's) approach to prevent, manage and minimise COVID-19 outbreaks in disability group homes along with insights from the disability group home managers on their experience of support provided by the LHD and other stakeholders. What are the implications for practitioners? Awareness of effective strategies supporting PWD that could be replicated in health organisations. [ABSTRACT FROM AUTHOR]

Anecdotal evidence strongly suggests that members of the First Nations Deaf community experience more barriers when engaging with the criminal justice system than those who are not deaf. Therefore, our purpose for writing this article is to highlight legal and policy issues related to First Nations Deaf people, including perspectives of professionals working with these communities, living in Australia who have difficulty in accessing supports within the criminal justice system. In this article, we present data from semi-structured qualitative interviews focused on four key themes: (a) indefinite detention and unfit to plead, (b) a need for an intersectional approach to justice, (c) applying the maximum extent of the law while minimizing social services–related resources, and (d) the need for language access and qualified sign language interpreters. Through this article and the related larger sustaining project, we seek to center the experiences and needs of First Nations Deaf communities to render supports for fair, just, and equitable access in the Australian criminal justice system to this historically marginalized group. [ABSTRACT FROM AUTHOR]

Described and discussed are comparative employment policies and programs for people with intellectual and other disabilities in Australia, Finland, and Sweden. The dominant economic and social policies of many Western countries are such that they continue to place considerable pressure on the development and maintenance of employment programs for people with intellectual and physical disabilities, particularly for those with high support needs. The authors note that these policies often result in tension between the simultaneous achievement of person-centered principles for people with disabilities and a desire for improved service efficiencies and accountability. In addition, a concern raised by specialists in all three countries is the demise of low skilled jobs, which traditionally have attracted people with intellectual disabilities. It is proposed that improving the level of education and training available for people with intellectual disabilities may improve their employment opportunities. In this vein, key aspects of these countries’ respective support programs were identified as an aid to policy-makers and service providers reconciling the disparities between employment needs and opportunities. [ABSTRACT FROM AUTHOR]

The benefits of sport and exercise participation for people with disability are well acknowledged. However, people with disability report numerous barriers to participating in sport and exercise, including negative interactions with fitness professionals. Limited research is available from the perspective of fitness professionals. This study aimed to understand the experience of fitness professionals supporting people with disability to engage in sport and exercise. A cross sectional survey study was used to gather quantitative and qualitative data on community-based fitness professionals from Australia, with or without experience working with a person with disability. A total of 72 fitness professionals took part in the study with most reporting experience and confidence in working with people with disabilities. Several barriers were identified with participants highlighting the lack of disability-specific training. Participants also identified potential facilitators, including effective collaboration with allied health professionals. There is emerging interest for fitness professionals to support people with disability to engage in sport and exercise. However, changes are required within the education provided to fitness professionals and with the current collaborative model with allied health professionals to better support the participation of people with disability in sport and exercise. As physical activity is pertinent to ongoing health and wellbeing of people with disability, with support, fitness professionals could provide a cost-effective solution to assist in enabling people with disability to access sport and exercise activities. Fitness professionals require continuing disability-specific education and input from allied health professionals to appropriately support their clients with disability. Changes are required within the Australian fitness industry and in the model in which allied health and fitness professionals collaborate to better support people with disability to engage in sport and exercise. Additional barriers external to the fitness professional such as the physical environment, funding restrictions and lack of societal awareness, continue to impede on people with disabilities' participation in sport and exercise settings and should also be acknowledged. [ABSTRACT FROM AUTHOR]

The final report from the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability contains a number of important reform recommendations that, if implemented, will reshape Australia's adult safeguarding environment. At the same time, these recommendations—which cover a variety of fields ranging from adult guardianship through to supported accommodation—are relatively modest; indeed, many of them have their origins in earlier systemic advocacy initiatives. Two central challenges confront their adoption: the fact that many of these recommendations are directed to the states and territories (not just the Commonwealth Government, which established the Royal Commission); and the lack of immediate apparent nexus between many of the proposed reforms and the harms suffered by people with disabilities that led to the Royal Commission's work. Both of these challenges can be met, but this will take ongoing advocacy by people with disabilities and their supporters. [ABSTRACT FROM AUTHOR]

The main objective of this person-centred study was to identify profiles of actual and perceived physical fitness among a sample of youth with intellectual disabilities (ID). Participants were 377 youth (60.4% boys) with mild (49.6%) to moderate (50.4%) ID recruited in Australia and Canada. Latent profile analyses revealed five profiles: (1) Underestimation of Average Physical Fitness (5.5% of the sample); (2) Moderate Overestimation of Low Physical Fitness (17.7%), (3) Moderate Underestimation of Average Physical Fitness (31.3%); (4) High Overestimation of Average Physical Fitness (28.3%); and (5) Moderate Underestimation of High Physical Fitness with an Accurate Estimation of Average Flexibility (17.2%). Profiles 1, 2, and 3 relatives to Profiles 4 and 5 included younger participants, more participants with moderate levels of ID, and participants with a higher body mass index. Additionally, profiles 1 and 3 also included a higher proportion of youth pursuing externally-driven motives and less frequently involved in sports outside of the school. In sum, our findings showed that the tendency of youth with ID to rely on upward or downward-lateral social comparisons may have resulted in a depreciation or overestimation of their low levels of physical fitness. [ABSTRACT FROM AUTHOR]

Lesbian, gay, bisexual, trans, queer, and asexual (LGBTQA+) young people with disability are known to experience higher rates of harassment or abuse than LGBTQA+ young people without disability. This study focused on participants in Australia and identified factors associated with harassment or abuse among LGBTQA+ adolescents and young adults who reported a disability as well as associations with mental health outcomes. Analyses were conducted from a national survey that included 2,500 LGBTQA+ people who reported a disability and were aged 14 to 21 years. Measures included experiences in the past 12 months of verbal and physical harassment or abuse due to one's sexual orientation or gender identity, sexual harassment or abuse, mental health, suicidality, and sociodemographic traits. Overall, 48.4% of participants with disability reported experiencing verbal harassment or abuse, 12.4% physical harassment or abuse, and 29.7% sexual assault or harassment. In multivariable regression analyses, verbal harassment or abuse was significantly more likely among trans men, participants with an intellectual disability, and those who were "out" to most or all of their family. Physical harassment or abuse was significantly more likely among participants with a physical or sensory disability. Sexual harassment or abuse was significantly more likely among trans women and participants with a physical or sensory disability. Participants who experienced harassment or abuse were also significantly more likely to have attempted suicide in the past 12 months. These findings will assist policymakers and practitioners in identifying contexts linked to a heightened risk of abuse among LGBTQA+ young people with disability and further underscore an immediate need to address and prevent harm in this population. [ABSTRACT FROM AUTHOR]

Objective To identify factors acting as barriers or enablers to the process of healthcare consent for people with intellectual disability and to understand how to make this process equitable and accessible. Data sources Databases: Embase, MEDLINE, PsychINFO, PubMed, SCOPUS, Web of Science and CINAHL. Additional articles were obtained from an ancestral search and hand- searching three journals. Eligibility criteria Peer- reviewed original research about the consent process for healthcare interventions, published after 1990, involving adult participants with intellectual disability. Synthesis of results Inductive thematic analysis was used to identify factors affecting informed consent. The findings were reviewed by co- researchers with intellectual disability to ensure they reflected lived experiences, and an easy read summary was created. Results Twenty- three studies were included (1999 to 2020), with a mix of qualitative (n=14), quantitative (n=6) and mixed- methods (n=3) studies. Participant numbers ranged from 9 to 604 people (median 21) and included people with intellectual disability, health professionals, carers and support people, and others working with people with intellectual disability. Six themes were identified: (1) health professionals' attitudes and lack of education, (2) inadequate accessible health information, (3) involvement of support people, (4) systemic constraints, (5) person- centred informed consent and (6) effective communication between health professionals and patients. Themes were barriers (themes 1, 2 and 4), enablers (themes 5 and 6) or both (theme 3). Conclusions Multiple reasons contribute to poor consent practices for people with intellectual disability in current health systems. Recommendations include addressing health professionals' attitudes and lack of education in informed consent with clinician training, the coproduction of accessible information resources and further inclusive research into informed consent for people with intellectual disability. PROSPERO registration CRD42021290548. [ABSTRACT FROM AUTHOR]