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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]

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

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

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

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]

Health literacy research and scholarship has largely overlooked the experiences of people with intellectual disabilities (ID), though growing concern about the health inequalities they face has increasingly given rise to health promotion interventions for this group. However, these interventions reference a rather limited vision of health literacy and largely fail to offer people with ID opportunities to develop capabilities to interact with health information in a more critical manner or to develop their understandings of how the wider social context impacts on their own experiences of health and health care. In this paper I offer some explanations for why people with ID have been excluded from the critical health literacy field. I suggest ways that a critical health literacy frame can advance understandings of (1) what literacy in general means for people with ID; (2) what it means for them to take part in critical health literacy practices, and (3) the nature of health texts - what they are and what they do for people with ID. I conclude with remarks about what involvement in critical health literacy initiatives might offer people with ID and also what a consideration of the experiences of people with ID can offer critical health literacy theorizing and research. [ABSTRACT FROM AUTHOR]

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

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

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

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

Some service providers use restraints and seclusion with people with an intellectual disability, and policies that permit such practices usually state that their use is primarily to prevent the risk of self-injury or risk to others. However, the use and effectiveness of restrictive practices have been questioned due to the negative impact on the service user and staff and may also be considered a contravention of the human rights of the service user. Consequently, policies are now trending toward limiting restraint use or on the prevention of or safe elimination of the use of restraint. In Ireland, new legislation has attempted to formalize the definitions of restraint and seclusion, as well as place restrictions on such practices. However, issues have been raised with respect to the implementation of the new policies, particularly in operationalizing a definition of restraint and applying it to widely heterogeneous clinical groups considering the autonomy that service providers have in devising their own service-level policies. The authors use legislation from Ireland and Victoria, Australia, to illustrate restraint practices and the issues emanating from its use. The authors argue that a gap remains between our understanding of the place of implementing restrictive practices with respect to service provision and their actual applications by providers. They conclude that such discordance between policy and practice needs to be addressed by stronger regulation. [ABSTRACT FROM AUTHOR]

In the Netherlands, physical/mechanical restraints in the care provided to people with intellectual disabilities are still in use, with the case of 'Brandon' being a recent and illustrative example. The public debate that this case triggered raised questions concerning the policy proposal in the Care and Coercion Bill ( Wetsvoorstel Zorg en dwang) and efforts to reduce the use of restraints. Thus, the authors undertook an inventory of government legislation and institutional regulations in order to obtain an insight into practices applying in other countries and to provide recommendations for developing policy on reducing the use of restraints in the care of people with intellectual disabilities in the Netherlands. Using a literature study, they observed that although the use of restraints in the care for people with intellectual disabilities is internationally regulated by the criterion of ultimum remedium, policy is clearly not always in line with practice. Various studies of best practices have identified some common elements in seeking to limit restrictive interventions, including strong leadership in care facilities based on national policy, trained staff, a strict monitoring system, and changes in attitudes on the use of restraints, with restraints being identified as treatment failure. The authors noted that the use of restraints, and efforts to reduce their use, is a dilemma internationally. In the Netherlands, the public debate on the use of restraints has not so far led to any significant political action. While decisions on a new legal framework still have to be made, it would be advisable to include a section on jurisdiction in the policy framework and to ratify the UN Convention on the Rights of Persons with Disabilities, which has many implications for both policy and practice. In the meantime, care facilities can start working on implementation plans, including the best practices described in this study. [ABSTRACT FROM AUTHOR]

Examining literature that tells us what people with intellectual disability (PWID) think and feel about their sexual lives may enable families and professionals to offer a more person-centered approach to education and support. Examining the voices of many individuals across several studies may provide more convincing evidence about the experiences of these individuals-turning a solo into a chorus. Thus, the purpose of this article is to describe the results of a metasynthesis of qualitative studies highlighting the voices of PWID with respect to relationships and sexuality. Combining the results of 16 qualitative studies, 271 participants with intellectual disability were interviewed individually or in focus groups about their feelings and experiences regarding intimate relationships. Studies were conducted across Europe, in Australia, China, and in the United States. A little more than half of the participants were male; ages ranged from 13 to 89. Results revealed two competing themes of control and desire. Participants across studies desired friendships and close interpersonal relationships, yet were restricted from developing these relationships by policies, program staff, and family members. [ABSTRACT FROM AUTHOR]

Objective: To identify and reach consensus on the priorities and operation of an adult tertiary intellectual disability mental health service in New South Wales, Australia. Method: An online Delphi consultation was conducted with 25 intellectual disability mental health experts. Results: Participants agreed that the service should involve a multidisciplinary team and accept people with an intellectual disability aged over 15 years with complex needs and/or atypical presentations. Agreed service roles included short-term assessment, diagnosis and treatment, providing high-level clinical advice, and capacity building. Endorsed principles and practical ways of working align with existing guidelines. Conclusions: This study describes experts' views on how an adult tertiary intellectual disability mental health service should operate in New South Wales. Further consultation is needed to determine the views of people with an intellectual disability and mental health staff. [ABSTRACT FROM AUTHOR]

The purpose of this study was to further address the “for whom” in the question of the effectiveness of modified schema-based instruction (MSBI) to teach mathematical problem solving to students with intellectual and developmental disability by evaluating whether positive outcomes from prior research would be replicated with elementary students in a different context. We aimed to analyze the “under what conditions” variable and assess feasibility of teacher-implemented MSBI in a small group. This study evaluated the effect of teacherimplemented MSBI in a small-group setting on level of independence in and maintenance of mathematical problem solving for elementary students with extensive support needs in semi-rural Australia. Implications for future research and practice are discussed. [ABSTRACT FROM AUTHOR]

Background People with an intellectual disability (ID) have more complex and different patterns of health care needs than the general population. They experience a greater burden of multi-morbidity, high levels of undetected and unmanaged health issues, and premature mortality than the general population. Primary care has a key role in the health care of people with an ID. Currently, very little is known about the consultation type and length, problems managed, and how general practitioners (GPs) manage these problems for people with an ID compared with the general population. This information would provide valuable insights into how GPs are achieving the health guidelines and facilitating people with an ID to achieve the highest attainable standard of health. Methods A secondary analysis of data was collected from January 2003 to December 2012 from the Bettering the Evaluation and Care of Health (BEACH) programme. Consultation type, consultation length in minutes, problem(s) managed during the consultation, medications, treatments provided, and referrals made, pre and post age-sex standardisation, at all GP encounters with people identified in the encounter record as having an ID ('ID' encounters, n = 690) were compared with those at 'non-ID' encounters ( n = 970 641). Statistical significance was tested with 95% confidence intervals. Results This study identified significant differences in consultation types, consultation length, problem(s) managed during the consultation, medications, treatments provided, and referrals made at 'ID' encounters compared with 'non-ID' encounters. 'ID' encounters had more indirect encounters, longer consultations, more problems managed, but an under management of common health conditions in people with an ID. Administrative rather than medically related actions dominated clinical treatments for people at 'ID' encounters, and they received fewer procedural treatments, referrals to specialists, and medications compared with those at 'non-ID' encounters. Conclusion The significant differences in consultations, problems identified and managed suggest that GPs may require additional support to (1) identify and manage common medical conditions experienced by people with an ID; (2) manage the increased time required for consultations; and (3) directly consult with people with an ID. Further research is required to determine why GPs managed problems in a significantly different way for people with an ID. [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]

Introduction: People with intellectual disability (ID) experience barriers in accessing mental health care. Recommendations have been made to implement specialist intellectual disability mental health (IDMH) services in Australia. However, there is limited evidence to inform service development. Method: Family members and support persons of people with ID (n = 42) completed an on-line survey about support for, and operation of, a tertiary IDMH service in New South Wales, Australia. Results: Participants agreed that a tertiary IDMH service would assist in meeting the needs of people with ID. Key service features included that it be delivered within the public health system, by psychiatrists and psychologists, provide face-to-face clinical contact and advice. Key service areas included behaviors of concern, self-harm, assessments, and interventions. Conclusion: These findings suggest support for a tertiary IDMH service and how it could be delivered. Further research is required from the perspective of people with ID, mental health staff, and clinical experts. [ABSTRACT FROM AUTHOR]

This paper investigates the transition experiences of students with intellectual disability, as they move from primary to secondary school in New South Wales, Australia. Employing a multiple case study approach, the authors investigated the transition from the perspective of the students experiencing it. During the study, ten students with mild to moderate intellectual disability participated in interviews and were observed in the school environment before and after they transitioned from primary school to secondary school. Results indicate that students with intellectual disability generally have a positive transition experience. Nevertheless, students commonly encounter a number of major challenges, including issues around managing school work and homework, and bullying. The study found several factors contribute to a successful transition. These include the provision of assistance to help students become familiar with and manage their physical environment, building positive relationships with teachers, and having extra support from special needs staff. The study suggests there are some simple and practical steps that schools can take to enhance outcomes for successful transition experiences. [ABSTRACT FROM AUTHOR]

Objective: Children with intellectual disability and marked feeding difficulties may undergo gastrostomy insertion to assist with their nutritional and medication needs. Use has increased recently for younger children, and it is intended to provide long-term support. This study explored the perceived value of gastrostomy for the quality of life (QOL) of children with intellectual disabilities and their families.Methods: Twenty-one primary caregivers of children with intellectual disability aged 2-18 years participated in semistructured telephone interviews. Data were analysed using directed content analysis, and data were coded to existing QOL domains relevant to children with intellectual disability and their families.Results: Benefits in each of the child and family QOL domains were represented in the interview data. For children, the impacts of gastrostomy for the physical health domain were predominant, supplemented by experiences of value for emotional well-being, social interactions, leisure activities and independence. For families, gastrostomy was integrated into multiple aspects of QOL relating to family interactions, parenting, resources and supports, health and safety, and advocacy support for disability. Shortcomings related to difficulties with equipment and complications.Conclusions: Our comprehensive overview of the value of gastrostomy for children with intellectual disability and their families was classified within a QOL framework. Gastrostomy was mainly supportive over long time periods across many QOL domains. Findings will be of use to patient counselling and education and the development of family support resources. [ABSTRACT FROM AUTHOR]

Abstract: Evidence‐based practice (EBP) has not been well established in the area of intellectual disability (ID) and comorbid mental ill health. Some attempts in the form of policies and practice guidelines have been made. The aim of this study was to investigate assessment practices of Australian psychologists working with adults from this specialist population and explore barriers to best practice implementation. One hundred and two psychologists completed a self‐report online survey exploring barriers to EBP implementation. Sixty‐one psychologists completed questions relating to their practice including diagnostic practices, application of special considerations, and use of specialist resources. Psychologists reported many assessment practices that were in line with current national and international guidelines including utilization of specialist assessment resources, interdisciplinary collaboration, and application of reasonable adjustments to standard practice to suit the needs of individuals with dual disabilities. However, the sample also reported a number of barriers to implementing best practice recommendations such as diagnostic issues, limited access, and awareness of clinical resources and limited access to mental health services. Findings from this study have implications for best practice guidelines and policies in how mental health services for individuals with IDs and their families are delivered in Australia. This includes facilitating collaboration between health and disability services, adequate training, and access to specialist resources and access to mental health services equipped to support the needs of this specialist population. [ABSTRACT FROM AUTHOR]

Abstract: People with intellectual disability in Australia experience poor mental health, are underrepresented in mental health policy, and encounter major barriers in accessing mental health services and treatments. This study interrogated the current representation of people with intellectual disability and recommended strategies to enhance the inclusion of intellectual disability in mental health policy. A policy analysis framework was developed that included context, stakeholders, process, and content. Nine pieces of Australian mental health legislation and 37 mental health policy documents were analyzed using the framework. Fifteen of the 37 documents included mention of intellectual disability with limited attention to the specific mental health needs of people with intellectual disability and mental illness. Only two documents identified specific strategies or measurable actions and targets to improve the access of people with intellectual disability and mental illness to mental health services. The documents’ strengths that may be applied to develop inclusive intellectual disability mental health policy included being values‐based, recognizing diversity, taking a life‐course approach, focusing on workforce development, and ensuring checks and balances. An inclusive approach to the development and implementation of intellectual disability mental health policy will best meet the mental health needs of individuals with intellectual disability. An inclusive policy approach will be based on a sound evidence‐base and include a comprehensive understanding of the context in which the policy is developed; consultation with key stakeholders including people with intellectual disability and mental illness, their family and carers, and those who work with them; cross‐sector collaboration and workforce training. An inclusive approach to the development and implementation of intellectual disability mental health policy using an integrated knowledge translation approach will address the current lack of attention to the important area of how to best meet the mental health needs of individuals with intellectual disability. [ABSTRACT FROM AUTHOR]

Issue Addressed: Intergenerational mentoring is emerging as a way to provide meaningful engagement and improve wellbeing for older adults in retirement. However, there is little, if any, Australian research concerning the benefits for older mentors involved in such mentoring. This study aims to investigate the experiences of older male mentors involved in an intergenerational mentoring program with young men with intellectual disability and identify any benefits to physical and mental health and generativity.Methods: This study used a mixed methods concurrent triangulation design. Quantitative outcomes data were collected pre and postintervention using the SF-36 and Loyola Generativity Scale. Qualitative data were collected using a single-interview approach. Mentors and mentees took part in a 6-month mentoring program based in Australian Men's Sheds.Results: No significant changes were seen in physical health and generativity. Investigation of mental health scores revealed a significant improvement in scores on the mental health subscale. Qualitative analysis revealed the main theme as "Learning together through a relational and practical routine" and four sub-themes.Conclusion: Men's Shed intergenerational mentoring programs present an environment for older, retired men to express generativity, improve their mental health and bond with younger generations.So what? The potential wellbeing implications for older men through intergenerational mentoring should form the basis of future research and intervention. [ABSTRACT FROM AUTHOR]

Background Quality of life for people with intellectual disabilities has been reported in the research literature across differing demographics. There has been, however, little research that has examined in-depth the experiences of women with intellectual disabilities aged 40 years or older. Materials and methods Fifty-five women from Sydney, Australia, and Prague, Czech Republic, were recruited to the study. Participants were recruited through agencies known to the researchers, ensuring ethical conduct of all procedures. Results Each participant completed a semi-structured interview, and using a grounded theory approach, a series of themes were identified common across all women. The strongest theme identified throughout the interviews was the lack of control participants perceived they had over their lives. Conclusions The results of this study further the call for people with intellectual disabilities to be provided the opportunity to participate in decisions about their life choices. [ABSTRACT FROM AUTHOR]

This article reviews current approaches of disability accommodation services to addressing the abuse and neglect of people with intellectual disability who live in them. We review international literature and provide practice examples from accommodation services for people with intellectual disability in Australia to develop a framework of current research, policy and practice in this area. The results of this review show that dominant policy and practice approaches do not give adequate consideration to the prevention and protection of people from harm, focusing primarily on responding to individual instances of maltreatment. Managerial, compliance-based systems may be deflecting attention from recognizing and responding more effectively to abuse and neglect at individual, systemic and structural levels. The current dominant approach fails to develop a culture of prevention and protection for people with intellectual disability. Further, some systemic and structural preconditions are set which make abuse and neglect less likely to be prevented. [ABSTRACT FROM PUBLISHER]

Focuses on the variation of the existing estimates of the prevalence of intellectual disability between different studies and among different populations in Australia. Number of people with one or more intellectual disabling conditions; Link of psychiatric disability for people with an intellectual main disabling condition; Presentation of three main sets of prevalence estimates of intellectual disability.

This paper describes the involvement of older people with intellectual disabilities in residential- and community-based activities and programmes. The 446 participants were selected from a national database of people of 55 years of age and over with intellectual disabilities in Australia. The data indicate that participants made infrequent use of public amenities and social and recreational facilities. With the exception of those living with relatives, most had limited contact with family and friends. The discussion draws attention to the need for independence training which will enable the current generation of middle-aged people with an intellectual disability to make decisions and choices about social and community activities. [ABSTRACT FROM AUTHOR]

Objective:: To describe the characteristics of psychiatrists working in the area of intellectual and developmental disability mental health (IDDMH) across Australia and New Zealand.Methods:: A secondary analysis of data collected by the Royal Australian and New Zealand College of Psychiatrists 2014 workforce survey. Characteristics of the IDDMH workforce ( n=146 psychiatrists) were compared with those of the broader psychiatry workforce ( n=1050 psychiatrists).Results:: The IDDMH workforce were more likely than the broader psychiatry workforce to be working across both the public and private health sectors, be engaged in outreach work, endorse specialty practice areas pertinent to IDDMH, treat younger patients and work more clinical hours per week. Part-time status and retirement plans of the IDDMH workforce matched those of the broader psychiatry workforce.Conclusions:: While some elements of the IDDMH workforce profile suggest this workforce is tailored to the needs of the population, the potential shortage of IDDMH psychiatrists highlights the need for the development of a specific training programme and pathway in this area. [ABSTRACT FROM AUTHOR]

Purpose – The purpose of this paper is to report on the under-representation of people with intellectual disability (ID) in Australian building guidelines. It presents a view about causes of this under-representation and offers opinion about the current status and future actions required to redress the situation. Design/methodology/approach – Electronic databases were searched to determine the extent of research about building access by people with ID and for references to both the historical treatment of people with ID and the nature of ID itself. Findings – The paper suggests the recently released Disability (Access to Premises) Standards and associated building code give no specific attention to the needs of people with ID. It suggests that poor historical treatment combined with difficulties with self-advocacy may have contributed to the lack of attention given to the needs of this building user group. It also suggests the need for evidence-based research to identify and substantiate inclusion of their needs in future building regulation. Research limitations/implications – There may be unpublished research and/or discussion covering the topic not retrievable through literature searches. Practical implications – While much has been written about adjustments to provide access for people with physical and sensory disabilities, more attention needs to be paid to the needs of those with ID to avoid inequities in building design. Originality/value – There is limited reference to building access for people with ID in literature and legislation. This paper adds to the literature and raises awareness of the ongoing need for greater inclusion. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities are at much higher risk of preventable deaths compared to the general community. However, studies identifying the cause of death in people with intellectual disability are generally based on one primary cause which is frequently attributed to the person's disability. Therefore, the aim of this study was to identify the most common associated causes that may have contributed to the deaths of Australians with intellectual or learning disabilities, particularly those that may be avoidable. Methods: Linked data that had previously been used to identify underlying causes of deaths were re‐analysed to determine other contributing causes of death in Australians with intellectual disabilities aged under 65 years who accessed disability services between July 2013 and June 2018. Findings: Two thousand three hundred and thirty‐three deaths occurred among 180,790 people with intellectual disability. Contributing causes of death with the greatest disparities compared to the general community were lung diseases due to external agents (adjusted rate ratio (RR) 70.6 (95% confidence interval [95% CI] 63.7–78.2), influenza and pneumonia (RR 18.3; 95% CI 16.4–20.4), and coronary heart disease (RR 3.3; 95% CI 2.8–3.8). Conclusions: Analysing all contributing causes of death in people with intellectual disabilities can ensure that the higher rates of preventable deaths in people with intellectual disability are identified and addressed earlier in the disability and health sectors. Accessible Summary: Only one major cause of a person's death is usually counted, but other information on contributing causes is often available.We used national data across Australia to look at contributing causes of death in people with intellectual or learning disabilities.Counting contributing causes of death is important because it can help to find ways that deaths of people with intellectual disabilities may be prevented.We found that people with intellectual disabilities were much more likely than other people to have contributing causes of death from lung infections, choking, flu and heart problems.Knowing that these causes happen more often in people with intellectual disabilities, can help health and disability services to identify these causes earlier and may prevent deaths. [ABSTRACT FROM AUTHOR]

Background People with intellectual disability ( ID) experience higher rates of major mental disorders than their non- ID peers, but in many countries have difficulty accessing appropriate mental health services. The aim of this paper is to review the current state of mental health services for people with ID using Australia as a case example, and critically appraise whether such services currently meet the standards set by the Convention on the Rights of Persons with Disabilities. Methods The literature regarding the current state of mental health services for people with ID was reviewed, with a particular focus on Australia. Results The review highlighted a number of issues to be addressed to meet the mental health needs of people with ID to ensure that their human rights are upheld like those of all other citizens. Many of the barriers to service provision encountered in Australia are likely also to be relevant to other nations, including the culture of division between disability and mental health services, the inadequate training of both disability and mental health workers in ID mental health, and the lack of relevant epidemiological data. None of these barriers are insurmountable. Conclusions Recommendations are made for adopting a human rights-based approach towards the development and provision of mental health services for people with ID. These include improved policy with measurable outcomes, improved service access via clear referral pathways and the sharing of resources across disability and mental health services, and improved service delivery through training and education initiatives for both the mental health and disability workforce. [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]

Background Following the closure of large residential facilities over the past several decades, emphasis on community living for adults with developmental disabilities has strengthened. However, the concept of community living is ambiguous. The term is often associated with congregation of people with disabilities in ordinary houses 'in' the community. Group homes, the most common contemporary formal expression of 'community living', may use ordinary houses and accommodate a small number of residents comparable to a large family. Individual supported living ( ISL) arrangements around a single person with a disability using person-centred principles are occurring with increasing frequency. The ISL manual was developed over 4 years in two sequential research projects to produce a quality framework articulating ISL and operationalising the framework into a review and planning instrument for ISL arrangements. Method The ISL manual was developed in three stages and overseen by a reference group of key stakeholders purposively recruited as well-versed in ISL. The first stage operationalised the quality framework over two half-day workshops with a group of key informants. Participants identified indicators and sources of evidence for each attribute of the quality framework. The quality framework, indicators, and sources of evidence were compiled into an initial evaluation instrument of nine themes consisting of 27 attributes. This was piloted in two rounds to enhance the utility of the instrument and develop the final manual which contained eight themes and 21 attributes. A comprehensive literature search was carried out to identify relevant empirical ISL studies. Results The literature search identified four empirical studies that incorporated ISL over the preceding 3 years. A previous literature search from the first research project that produced the quality framework spanned 27 years and identified five empirical studies. We concluded that the empirical base for developing evidence for the nature and outcomes of ISL arrangements was sparse. The ISL manual and scoring booklet developed in the current research project includes six illustrative case studies of ISL, instructions for potential users to review living arrangements or set up a new arrangement, and the review framework consisting of descriptions of themes and attributes, indicators, and sources of evidence. Conclusions The dearth of empirical studies of ISL arrangements for people with developmental disabilities, despite increased policy emphasis on individualised options, underscores the importance of planning and review tools to promote quality outcomes. The ISL manual can assist adults with developmental disabilities, families, carers, and service providers to plan and review ISL arrangements. Further research will enhance the properties of this instrument and establish the relationship between quality of ISL arrangements and outcomes such as quality of life, and participation and inclusion. [ABSTRACT FROM AUTHOR]

Background To date, the descriptions of a 'good' direct care worker used to recruit workers for disability services have largely been drawn up by managerial professionals in charge of hiring supports for people with disabilities. However, previous research highlights that these professionals conceptualise a 'good' direct care worker differently from service users with an intellectual disability (ID), with professionals placing an emphasis on describing workers with a range of practical skills and knowledge and service users placing an emphasis on describing workers with interpersonal skills. The aim of this research was to replicate this finding using a methodological approach that rectifies some of the weaknesses of previous research in this field. Method Semi-structured interviews were conducted to explore the qualities that are valued in residential direct care workers (RDCWs) from the perspective of seven residents with ID and seven managers of accommodation services located in metropolitan Melbourne, Australia. Results Thematic and chi-squared analysis confirmed the findings of previous research with residents with an ID placing more of an emphasis on the interpersonal behaviours of RDCWs in their descriptions compared to the managers. Conclusions The interpersonal skills of a potential worker along with their practical skills and knowledge must be considered when recruiting RDCWs. It is also implied that given the different conceptualisation of a 'good' direct care worker across service users and professionals, increased service user participation in the organisation of appropriate supports is warranted. [ABSTRACT FROM AUTHOR]

Background Considerable attention is currently being directed towards both active ageing and the revising of standards for disability services within Australia and internationally. Yet, to date, no consideration appears to have been given to ways to promote active ageing among older adults with intellectual disabilities (IDs). Methods Semi-structured interviews were conducted with 16 Australian professional direct-care support staff (service providers) about their perceptions of ageing among older adults with lifelong IDs and what active ageing might entail for an individual from this population who is currently under their care, in both the present and future. Data were analysed against the six core World Health Organization active ageing outcomes for people with IDs. Results Service providers appeared to be strongly focused on encouraging active ageing among their clients. However, their perceptions of the individual characteristics, circumstances and experiences of older adults with IDs for whom they care suggest that active ageing principles need to be applied to this group in a way that considers both their individual and diverse needs, particularly with respect to them transitioning from day services, employment or voluntary work to reduced activity, and finally to aged care facilities. The appropriateness of this group being placed in nursing homes in old age was also questioned. Conclusion Direct-care staff of older adults with IDs have a vital role to play in encouraging and facilitating active ageing, as well as informing strategies that need to be implemented to ensure appropriate care for this diverse group as they proceed to old age. [ABSTRACT FROM AUTHOR]

Background People with intellectual disability ( ID) experience health inequity compared with the general population, a key contributing factor being disparities in social determinants of health. The enactment of the United Nations Convention on the Rights of Persons with Disabilities ( CRPD) provides a platform for the progression and promotion of health and other interconnected rights to address barriers to the highest attainable standard of health for this populace. Rights can be brought to life through advocacy efforts. This paper explores the meaning, perceptions and experiences of advocacy by family members and paid support workers of adults with ID and locates the findings within a health and human rights discourse. Methods As part of a larger randomised controlled trial, 113 parents and 84 support workers of adults with ID completed a telephone interview that included open-ended questions about their understanding and experiences of advocacy. Thematic analysis was used to identify relevant themes. Results Five key themes were identified. The first underscored how advocacy to 'speak up' for the person with ID is integral to both parent and support worker roles. The second and third themes considered the contexts for advocacy efforts. Access to quality health care was a core concern, along with advocacy across other areas and sectors to address the person's wider psychosocial needs. The remaining themes highlighted the many dimensions to advocacy, including differences between parent and support worker views, with parental advocacy being an expression of 'caring' and support workers motivated by a 'duty of care' to protect the individual's 'rights'. Conclusion Parent and support worker advocacy provides one means to address the social determinants of health and fulfilment of health rights of and for people with ID. Policy and practice in the context of governmental obligation under the CRPD should support advocacy and make health rights the reality not rhetoric for this group of men and women. [ABSTRACT FROM AUTHOR]

Families/carers relinquishing the care of family members with a disability into the care of out-of-home respite facilities is an under-researched area in the disability field. With this in mind, the aim of this study was to explore the factors that lead to families relinquishing care, the potential early indicators that families are considering relinquishment; the factors that may prevent relinquishment and the outcomes for families/carers after relinquishment occurs. Thirty-two client files (of individuals for whom families have relinquished their care in a defined 12-month period) were reviewed for information around their relinquishment into out-of-home respite care facilities for an extended stay. Staff members involved with these families (a total of 17) were also interviewed to provide more information. A thematic analysis of the results found that the factors that led to relinquishment could be categorised into: (1) characteristics inherent to the individual with intellectual disability; (2) characteristics inherent to the family/carer; and (3) characteristics associated with the support context that the carer/family is currently experiencing. It was also found that families'/carers' experienced positive outcomes after relinquishment had occurred; however, feelings of guilt and mourning were initially felt. Extra supports (e.g. increased respite care, planning for movement of the family member into out-of-home permanent accommodation and case management) and positive interventions such as parent training were highlighted as potential strategies to achieve more lasting benefits from short-stay out-of-home respite care. [ABSTRACT FROM AUTHOR]

Falls among people with intellectual disability (ID) occur at a younger age than the general population and are a significant cause of injury and hospitalisation. There is very limited research investigating risk factors for falls among people with ID and none with people living outside of formal care arrangements, either independently or with their family. We used a medical chart audit to identify the incidence and risk factors for falls among people with ID living in a variety of settings. We retrospectively identified 114 consecutive patients, aged 18 years and over who attended a clinic for people with developmental disabilities within a 15-month period. Fall information was measured by carer recall of falls in the past 12 months. Potential risk factors were extracted from medical reports and a patient information questionnaire. Potential predictors were identified using univariate analysis and entered into a multiple logistic regression. Of 114 participants, 39 (34%) reported a fall in the previous 12 months. The number of reported falls was similar for formal care and non-formal care arrangements. The vast majority of fallers (84%) reported sustaining an injury from a fall and many potential risk factors were identified. Multivariate analysis revealed having seizures in the past 5 years, a history of fracture and increasing age were risk factors for falls. Falls are a significant health concern for adults with ID of all ages as a result of their incidence and the resulting injuries. Falls appear to be equally an issue for people residing in formal and non-formal care accommodation. Further research is needed to develop screening tools and interventions for this population. [ABSTRACT FROM AUTHOR]

The article discusses contemporary policing issues affecting the mentally ill both in Australia and in an international context. Despite the problems associated with police in responding to EDP the general consensus seems to be that in most cases law enforcement officers do a difficult and stressful job in a professional and humane manner. It also illustrates cases in which emotionally disturbed persons (EDP) also seek to place themselves in situations they hope to be killed by the police.

Objectives: Literature on Indigenous Australians (Aboriginal and Torres Strait Islander people) and intellectual disability (ID) is summarized in order to identify current state of knowledge, gaps, and areas for further research.Methods: A selective review of psychiatric literature using relevant medical databases was undertaken. Key articles were identified and their findings described.Results: ID is reported to be more prevalent in Indigenous Australians. Sociocultural constructs and a lack of validated psychometric measures affect what is considered to be ID in Indigenous communities. Prenatal, perinatal, and postnatal factors impair brain development and contribute to ID in Indigenous communities. Comorbid physical and psychiatric disorders need to be assessed and managed.Conclusions: ID is an emerging area of health concern for general and mental health professionals working with Indigenous Australians. This important area requires further research, appropriate training, and resourcing. [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]

This paper examines the adjustments made to include people with intellectual disabilities in mainstream services. Drawing on in-depth interviews with both people with intellectual disabilities and mainstream service managers in four urban regions in Australia, the paper points to three modes of practice that are operationalised, to different degrees, when people with intellectual disabilities seek access to mainstream services: a commitment and adjustments to support inclusion of a wide range of marginalised people (diversity and inclusion ethos); adjustments to support inclusion of people with intellectual disabilities more specifically (differentiated adjustments); and, personal support for service users with intellectual disabilities. We argue that these three modes, at the service level, correspond in complex ways with three broader approaches to social inclusion: mainstreaming, differentiation and individualisation. Rather than contradictory modes of inclusion, our analysis suggests these approaches should be understood as complementary. Some mainstream services that value 'inclusion' make adjustments to their service in order to better include people from different marginalised groups. Such adjustments have mixed outcomes for people with intellectual disability, whose specific needs are not always met. Some mainstream services operate separate activities for users with intellectual disability. This helps them manage behavioural and communication challenges, and can help people with intellectual disability experience a sense of belonging. But separate activities also limit opportunities for full inclusion in the mainstream. Often people with intellectual disability require their own personal support to be able to use mainstream services. Some mainstream services rely on such personal support as their main strategy to include people with intellectual disability. Other mainstream services work collaboratively with personal supporters to promote inclusion. [ABSTRACT FROM AUTHOR]

The article presents an excerpt of speech from Michael Sullivan, Vice Chair, Council for Intellectual Disability, which features need to address mental health needs of people with intellectual disability and attitudes to support people with intellectual disability of mental health.

Background: People with intellectual disabilities living in group homes often have complex health needs, are high health service users and need support from their service provider to access health services. In Australia, little is known about the types and amounts of these supports. Methods: A case study was conducted on a large Western Australian disability provider of group homes to 160 people with intellectual disability. Over an 18‐month period, including during the COVID‐19 pandemic, the study quantified health service use in hospital‐ and community‐based settings, ways by which the person was supported to access health care and the impact on other people supported by the provider. Economic costs of supporting access to health services were estimated. Findings: Overall, the disability provider supported 160 people in accessing health services an average of 23 times each (n = 3617, median = 20, interquartile range = 10–33) over the 18 months. Support included staff attending with the person (96%), following up with guardian/decision‐maker (50%), additional resourcing via overtime or staff backfills (6%) and transport (94%). The average cost of supporting one health visit was estimated at $78.51 AUD (2021). Impact on the person's household included loss of opportunity for housemates (30%), reduced supervision within the home (79%) and longer timeframes to complete care needs (32%). The impact of COVID‐19 restrictions saw a reduction in allied and mental health service use that did not return to prepandemic levels following the cessation of restrictions. Primary care, specialist, outpatient, pathology and emergency service use was also lower in the postrestriction period compared to the prepandemic period. Conclusions: For people living in group homes, the disability provider plays an essential role in supporting health service access, primarily through the provision of support staff and transport. The change in health service utilisation following the COVID‐19 restriction period indicates that altered health system priorities can potentially exacerbate access inequality for people with intellectual disability. Accessible summary: People with intellectual disability frequently need support to go to a health service.Our study looked at how people in group homes receive this support.We found that after COVID‐19 restrictions, people received fewer health services.This is important as we need to make sure that people receive the health services that they need. [ABSTRACT FROM AUTHOR]