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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]

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

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

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

Background While inclusive research has become an important stream in research with people with intellectual disabilities, there is a tension between the possibly empowering research process and the strength of the research itself to make social change happen. In this paper, we explore the contribution of two inclusive qualitative research studies in Australia and the Republic of Ireland to change in policy and legislation. Materials and methods Both studies used qualitative methods including life stories and focus groups to explore the issue of sexuality and relationships. In both studies, people with intellectual disabilities were actively involved in undertaking the research. Results Both studies revealed that it was difficult for people with intellectual disabilities to express their sexuality openly or to form adult relationships. Conclusions Both studies were used by people with intellectual disabilities and their supporters to promote change in which they had a heard voice. Accessible Abstract This paper is about how people with intellectual disabilities and their supporters can use research which they have done to change policies and laws that affect them. When people with intellectual disabilities are doing research it is called inclusive research.We write about two research studies which were about the sexual lives and relationships of people with intellectual disabilities. One research study was in Australia and one was in the Republic of Ireland.In the Australian study, Living Safer Sexual Lives, 25 people with intellectual disabilities told their life stories and talked about sexuality and relationships.In the Irish study people with intellectual disabilities told life stories and talked with other people with intellectual disabilities about their sexuality and relationships in groups. These are called focus groups.In this paper we explore 4 questions that arose from these studies. Question 1. What impact does doing research have on the people who are involved in it? People with intellectual disabilities in Australia were members of the group that guided the research. They were partners in its design, in deciding what questions should be asked about sexuality and relationships., and thinking about what was found out. They became involved in making films about the study. They learned a lot about research, sexuality and relationships and became members of a government committee to change policy about sexuality and people with disabilities. In Ireland people with intellectual disabilities involved in doing the research talked together about their lives. They then talked with 16 groups of people with intellectual disabilities about their relationships and sexuality. They learned about research and about sexuality and developed plays about their experiences., Question 2. To what extent can inclusive research change policy and practice? In Australia the research led to a change in government policy about sexuality and people with disabilities. The new policy clearly stated people with disabilities had rights to relationships and to a sexual life. It set out rights and responsibilities for people with intellectual disabilities and service providers about relationships and sexuality. It took a long time to get a change in policy and people with intellectual disabilities were part of the getting the change to happen. In Ireland there is a law which says that it is illegal to have some forms of sex with people with intellectual disabilities. From the research people with intellectual disabilities became involved in talking with government about changing this law so that it gives them more rights to a sexual life. The law has not changed yet but the voices of people with intellectual disabilities are now being heard., Question 3 When does research shift into being advocacy? How does this happen? People with intellectual disabilities in both studies became advocates to get change to happen. Partly this was because they had become more 'expert' about sexuality and relationships and the policy and law. They were angry at what they had found out in the research and wanted to get change to happen., Question 4 What added value does including people with intellectual disabilities as researchers give to the research? People with intellectual disabilities had knowledge and experience that made it possible for the research in both Australia and Ireland to happen. They were important in how the research was done and what was done with it after it was finished. [ABSTRACT FROM AUTHOR]

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

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]

Background: While there has been a strong national and international emphasis on social inclusion over the past 15 years, many people with intellectual disabilities remain socially isolated in their communities. Mobile technology has the potential to support social inclusion and there is great interest among adults with intellectual disabilities in using technologies such as computers, smartphones, tablets and the internet. This study aimed to investigate the use of mobile technology by people with intellectual disabilities, and its capacity to improve their social inclusion. Methods: Data were collected using individual interview, group interviews or interviews using Photovoice with 32 adults with intellectual disabilities and analysed using inductive content analysis. Findings: Findings indicated that adults with intellectual disabilities use various mobile technology and apps for multiple purposes, including social activities, work, support, productivity, navigation and entertainment. Enabling inclusion, increasing convenience and accessibility were viewed as advantages of mobile technology, while disadvantages were related to social issues and dangers resulting from the use of mobile technology and the practical limitations and ubiquitous nature of mobile technology. Barriers to using mobile technology included having limited access to the technology itself in certain contexts and difficulties with its use. Receiving support from others and awareness of safety measures enabled the use of mobile technology among the participants. To facilitate the use of mobile technology among people with intellectual disabilities, there needs to be greater education about this and other technologies including their features, design and apps. Importantly, people with intellectual disabilities need to be involved in the design of apps. Conclusions: To fully harness the potential of using mobile technology for the purpose of developing social relationships and sense of belonging in the community, people with intellectual disabilities should be supported in developing an awareness of the limitations of mobile technology and practicing appropriate safety measures. Accessible summary: Many people with intellectual disabilities are lonely in their communities. Mobile technology can help people to feel connected.32 people with intellectual disabilities from News South Wales, Australia, took part in interviews, focus groups and taking photos.People use mobile technology and apps for social activities, work and entertainment. People said mobile technology and apps help with inclusion, accessibility and making things easier. Disadvantages of using mobile technology include unsafe online contacts and no Wi‐Fi connections.People should take risks when using mobile technology if it does more good than harm. We found out about barriers to using mobile technology, some people do not have access to it. Mobile technology equipment and apps should be developed together with people with intellectual disabilities. [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]

Everyone has the right to employment. Work is important for health, well‐being, and social, economic, and financial inclusion. However, it is often difficult for people with intellectual disability to find and maintain work, especially in the open labour market. Policy challenges remain about who can access open employment (also sometimes called competitive or supported employment) and how often people with intellectual disability do so. Greater understanding about the barriers that people with intellectual disability encounter when they try to find and keep work in open employment is needed. Drawing on research with 51 people with intellectual disability in Australia, this paper examines the systemic barriers they report to finding and maintaining work in open employment. The findings highlight that the barriers they experience stem from narrow, dismissive, and discouraging attitudes to their work in open employment and from a spectrum of experiences of stigma and discrimination in open workplaces. The paper thus provides new knowledge about reasons that people with intellectual disability may either reject or not continue in open employment and take up less inclusive work options. The paper discusses the implications of the findings, including the need for policy development for attitudinal change, designing more varied roles for employees with intellectual disability, ensuring access to industrial relations protections, and increasing and better regulating and funding requirements on support to people with intellectual disability who are seeking work in open employment. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disability do not have adequate access to mental health services and have worse mental health outcomes than the broader community. Access to information about mental health, treatment, and services has been advocated as one strategy to address these inequities. This article presents findings from a policy analysis of how the right to accessible information is represented in Australian mental health policy, with a focus on information access for people with intellectual disability. Method: An analysis of Australian and New South Wales state policies relevant to mental health services 2007–2017, in current use and available online (49 documents) was conducted. Principles in the United Nations Convention on the Rights of Persons with Disability 2006 and an integrated health literacy framework were used to frame a content analysis. NVivo 11 (QSR 2015) was used to search the policy documents and themes were identified according to the policy type and purpose. Findings The right to information is expressed in Australian and New South Wales state policy documents. However, the mental health policies do not refer to the communication needs of people with intellectual disability or incorporate strategies to address their needs. Many of the mental health policy directives incorporate the need for tailored communication. Some documents mention the needs of other groups of people with specific communication needs, but not people with intellectual disability. Implications: The inconsistency between the right to information expressed in policies and processes to communicate information with people who have intellectual disability needs to be addressed. The longstanding disparities in health outcomes, and difficulties accessing mental health service experienced by many people with intellectual disability underline the pressing need for policy to require accessible information practices. [ABSTRACT FROM AUTHOR]

As the largest public health crisis within a century, the COVID‐19 pandemic has caused long‐term disruption in the support systems of people with intellectual and developmental disabilities (IDD) across the globe. The purpose of this study was to investigate challenges and ameliorative strategies to supporting the basic care needs of people with IDD 1 year into the pandemic, as experienced by nurses who specialize in IDD nursing. We surveyed a convenience sample of 369 nurses from across North America, Europe, and Australasia using a 52‐item online questionnaire. Descriptive statistics were used to rank the greatest challenges and the degree of support available to nurses, and manifest content analysis was used to analyze open‐ended responses related to ongoing challenges and ameliorative strategies. Results of descriptive analyses revealed consistent findings across global regions in terms of the challenges faced by nurses; the greatest challenges related to supporting or enabling socialization with family/friends, ensuring adequate day programming or educational services, identifying/planning alternative entertainment activities, ensuring adequate staffing of familiar support workers and caregivers, and managing challenging behaviors related to change in daily routine and activities. Nurses described a considerable degree of support offered by their organizations in terms of flexibility in scheduling related to family obligations and paid time off for COVID‐19‐related isolation and quarantine. Content analysis of open‐ended survey responses revealed numerous challenges related to: (1) client socialization, meaningful activity, and mental/behavioral health; (2) interpreting, keeping up with, and helping others to understand COVID‐19 guidelines; (3) access to, quality of, and continuity of care; and (4) COVID‐19 fatigue and the influence of time. Overall, our study highlights ongoing issues with access to care and support, exacerbated by the pandemic, and the importance of having meaningful activity and socialization for overall well‐being of people with IDD during a long‐term public health crisis. [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: Carer mental health literacy and help seeking are areas that are not well researched in the intellectual disability field. This study aimed to explore the above including service utilization experiences of Australian parents with an offspring with an intellectual disability and a comorbid psychiatric disorder. Method: Forty‐one parents took part in an online survey assessing satisfaction and helpfulness ratings of received services. Twenty‐six parents also completed items to assess mental health literacy and attitudinal barriers to help seeking. Results: Parents showed good mental health literacy with depression and with challenging behaviour associated with autism and poorer literacy with mixed presentations. Few attitudinal barriers to help seeking were reported. Parents reported varied helpfulness and satisfaction ratings with disability and mental health services. Conclusions: Parents are capable of recognizing the need to seek professional help for their offspring. Implications for service coordination, provision and carer involvement are discussed. [ABSTRACT FROM AUTHOR]

Background: The aim was to explore the relationship between quality of active support and communication support for people in group homes with high and low support needs. Methods: Data from 182 service users, 20–81 years (mean = 40), 89 with high support needs, were observed to have either good (n = 142) or poor (n = 40) communication support. Measures were of quality of active support, engagement and staff contact; field notes provided examples of good and poor communication supports. Results: We found a relationship between the quality of communication support and active support. Receiving good communication was associated with higher levels of engagement. Field notes included some examples of appropriate communication supports, but limited use of augmentative and alternative communication (AAC). Conclusions: Staff show limited use of appropriate communication with people having high support needs who require AAC. Strategies to improve quality of practice are discussed. [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]

Background Australia's national ageing policy recognises that people ageing with intellectual disability (ID) require particular attention, yet there is no policy framework concerning this population. This study describes the distribution and characteristics of people with ID in residential aged care in Victoria, provides insights into the pathways they take into aged care, and gives some indications of how facilities adapt to their needs. Method A postal survey was sent to 826 residential aged care facilities in Victoria, seeking information from directors about their residents with ID. Facilities that responded were fairly representative of all facilities in Victoria. Findings Residents with ID were younger, had entered at an earlier age and remained longer than other residents. Their reported dependency profile was similar to the general aged care population, although the incidence of dementia was lower. Primary areas of concern identified by providers were: inability to fit into the resident community, lack of participation in activities and lack of meaningful relationships. Conclusion This study provides a first glimpse into how older people with ID find their way into aged care and how others view their experiences once there. It suggests that further investigation is required into the accuracy of assessment undertaken prior to entry to more clearly understand whether residents with ID are inappropriately placed in residential aged as a result of a shortage of disability accommodation and inadequate resources to support aging in place for those in such accommodation. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities (ID) are at increased risk of secondary health conditions, reduced quality of life and life expectancy. Children with ID demonstrate low levels of physical activity in association with a higher prevalence of obesity, a modifiable risk factor associated with secondary health conditions including type 2 diabetes and cardiovascular disease. Despite this, physical activity interventions addressing weight and weight‐related complications in this population are limited. This study aimed to establish the feasibility of a school‐based group exercise intervention for children with moderate to severe ID. Methods: A single‐arm intervention study was used to establish the feasibility of a 16‐week exercise intervention. Children attending a School for Specific Purposes in Sydney, Australia, participated in two 30‐min exercise sessions per week across the intervention period in addition to their regular physical education class. Each exercise session was 60% aerobically based, 20% strength based and 20% targeted towards fundamental movement skill development. We used two facilitation strategies to assist the delivery of the intervention, including the implementation of a variety of communication resources and promotion of social interaction. Feasibility was assessed through recruitment rates, program retention, adverse effects, attendance, group size feasibility and non‐compliance. Anthropometric measures included height (m), weight (kg) and waist circumference (cm; umbilicus), with body mass index (BMI) and waist‐to‐height ratios (WtHR) used to determine cardio‐metabolic risk. Aerobic capacity was assessed using the submaximal 6‐min walk test (6‐MWT). Intensity of physical activity sessions was measured through the use of tri‐axial accelerometers and compared to physical activity recommendations. Results: Ten children aged between 9 and 13 years completed the 16‐week intervention, with a 55% recruitment rate, 91% program retention, 86% attendance and with no adverse effects reported. Sessions commenced as 1:1 supervisor to child ratios before progressing to established small groups of 2:7 (supervisor : child). Children spent 38.4% (11.5 min) of each session in moderate to vigorous physical activity (MVPA), equating to 20% of their MVPA recommended daily physical activity levels (twice per week). There was a significant change in weight across the intervention period, with a trend towards increased weight between mid‐intervention and 3‐month follow‐up time points. There were no significant changes in child BMI, WtHR or aerobic capacity. Conclusions: A school‐based group exercise intervention for children with moderate to severe ID is feasible and safe, with high retention rates and physical activity participation. No significant improvements in body composition or aerobic capacity were determined. The present study demonstrates that engaging children with moderate–severe ID in school‐based group exercise is feasible to assist in physical activity participation. [ABSTRACT FROM AUTHOR]

Background: The progressive increase in life expectancy of people with intellectual disability (ID) has resulted in enhanced survival into old age and has also seen a growth in research on both lifelong and emerging ageing‐related health issues. Health issues amongst provider‐supported adults have been previously studied, but these studies have not always included older community‐dwelling adults with ID. Methods: A study examining the extent of mental health of 391 community‐dwelling adults with ID age 60 and older in both metropolitan and rural areas of two East Coast Australian states was undertaken using a cross‐sectional survey. Examined were a range of demographic (age, sex, living arrangements, employment and socio‐economic status) and life (co‐morbidities, adverse life events and social support) factors. Data were parsed by two age groupings (60–65: n = 234 and >65: n = 157). Results: Findings revealed that older community‐dwelling adults with ID have many of the same mental health disorders as do other ageing people, with the exception of significant psychiatric disorders often associated with older age. Over a third (35%: n = 137) reported some one or more mental health disorders. Age, sex, location (rural or urban), financial hardship, social support or type of living arrangement were not statistically significant as risk factors for poor mental health. However, employment status was a clear predictor. Stepwise regression models showed a strong association between mental ill‐health and adverse life events and between mental ill‐health and multiple physical co‐morbidities. Conclusions: The cross‐sectional nature of the study limits causal inference. The cumulative effect of chronic health conditions and adverse life events cannot be prevented retrospectively. However, greater awareness amongst both health professionals and care staff that older adults with ID have a high likelihood of significant and/or repeated traumas and need better health care to limit physical co‐morbidity may assist in providing support that is better tailored to individual needs in older age to reduce the burden of mental ill‐health. [ABSTRACT FROM AUTHOR]

Background Individuals with intellectual disability (ID) have a higher likelihood of exposure to identified risk factors for suicide when compared with the general community and have been recognised as being both capable of forming intent for suicide and acting on this intent. However, in spite of research outlining these concerns from the 1970s, there remains a dearth of studies that examine suicide amongst the population of people with ID. Method An online cross-sectional survey was purposively developed, with questions aimed at identifying both the experiences and current practices of support staff who assist people with ID in relation to suicide, suicidal behaviour and suicide assessment. It was undertaken across both rural and metropolitan areas in Australia. The survey was open for a period of 12 months. A total of 139 respondents (109 female/30 male), with a mean age of 41 and an average 12 years of experience in supporting people with ID, completed the tool. Results A total of nine suicides by people with ID were reported. Seventy-seven per cent of the respondents reported that they had individuals with ID display suicidal behaviours, and 76% noted that a person had specifically talked about wishing to end their life. Only four participants (3%) noted that they did not support individuals with a dual diagnosis of ID and mental health concern. Sixty per cent of participants reported that no one in their organisation had ever completed a suicide risk assessment, and only 28% reported that they would do a suicide risk assessment if an individual that they supported was diagnosed with a mental health issue. Conclusions The current findings indicate that support staff recognise the capacity of people with ID to conceptualise suicide, note the existence of suicidal discussions and behaviours and report on actual suicides. This represents one of the few Australian studies that has specifically considered suicide amongst this cohort of people and reinforces the fact that suicide is not unknown in this population. The data indicate a possible divide between the reports of people with ID actively talking about and acting on suicidal thoughts and the lack of any proactive use of any tools to assess for this risk. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disability experience high rates of mental ill health but multiple barriers to access to quality mental health care. One significant barrier to access is a generalist mental health workforce that lacks capacity, and consensus on what constitutes core workforce competencies in this area. As such, the first step in developing a comprehensive strategy that addresses these barriers is to define the core mental health workforce attributes. Methods: Thirty-six intellectual disability mental health experts from across Australia participated in a modified online Delphi which aimed to reach consensus on the core attributes required of the generalist mental health workforce. At the end of each Delphi round, descriptive analyses and thematic analyses were completed. Results: Consensus was reached among the participants for 102 attributes across 14 clinical domains. The results highlighted specific attributes in all areas of clinical practice, especially for communication (e.g., utilizes assistive communication technology), assessment (e.g., assess contributing factors to behaviours) and intervention (e.g., uses integrative interventions). Conclusion: A comprehensive strategy is required to facilitate the generalist mental health workforce to obtain these attributes. [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]

Accessible Summary: ●Lisa Scott became an artist after she joined a supported studio in Sydney, Australia.●The studio is like her second family, and the staff have always told her 'you can do this'.●Lisa is proud that she is an artist and likes being able to share her work.●Lisa made an artwork about her life story and some big changes she has experienced. Background: Over 10 years ago, Lisa Scott first began making art at a studio in Sydney that supports people with intellectual disability to realise their creative ambitions. In this article, we consider what it has meant for Lisa to become an artist and, in the process, share the story of other big changes in her life. Methods: During audio‐recorded conversations, we discussed Lisa's life story and the role of her creative practice within it. We worked together to write about some of the things we discussed. Findings: Becoming an artist has been an important transition for Lisa. With the support of staff at the studio, she has realised what she is capable of, and so have other people—from her family to complete strangers—who all value her work. Through her art, Lisa has been able to find personal relief and reflect on big changes in her life, including the loss of her mum. In a dress hand‐stitched with words from her journals, she has explored another way of sharing her story. Conclusions: Art at its best forges connections between people. Lisa's art and life are evidence of this. [ABSTRACT FROM AUTHOR]

Background: Birth order effects have been linked to variability in intelligence, educational attainment and sexual orientation. First‐ and later‐born children have been linked to an increased likelihood of an Autism Spectrum Disorder (ASD) diagnosis, with a smaller body of evidence implicating decreases in cognitive functioning with increased birth order. The present study investigated the potential association between birth order and ASD diagnostic phenotypes in a large and representative population sample. Methods: Data were obtained from an ongoing prospective diagnostic registry, collected between 1999 and 2017, including children (1–18 years of age, n = 5,404) diagnosed with ASD in the state of Western Australia. Children with ASD were ranked relative to sibling's birth to establish birth order within families at time of ASD diagnosis. Information reported to the registry by health professionals at the time of diagnostic evaluation included demographic and family characteristics, functional abilities and intellectual capacity. Results: Adaptive functioning and intelligence scores decreased with increasing birth order, with later‐born children more likely to have an intellectual disability. Compared to first‐born children with siblings, first‐born children without siblings at the time of diagnosis also exhibited decreased cognitive functioning. Conclusions: These findings demonstrate for the first time an association between increasing birth order and variability in ASD clinical phenotypes at diagnosis, with potential evidence of reproductive curtailment in children without siblings. Taken together, these findings have significant implications for advancing understanding about the potential mechanisms that contribute to heterogeneity in ASD clinical presentations as a function of birth order and family size. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disability face a number of barriers to participation in physical activity. This paper aimed to determine rates of sport and physical activity participation in an Australian sample of adults with intellectual disability, compared with rates of participation in the general Australian population. A secondary aim was to investigate factors that may contribute to participation of adults with intellectual disability. Method: Participants were part of the Australian Child to Adult Development (ACAD) study, consisting of a community sample with intellectual disability (n = 305), groups of adults with autism (n = 94), Down syndrome (n = 64), fragile X syndrome (n = 52), Williams syndrome (n = 45), and Prader–Willi syndrome (n = 30). Participation in sport/physical activity was reported over the past 3 months. Rates of participation were reported for adults with intellectual disability and compared with rates in a general Australian population sample. The relationship between participation in physical activity and age, degree of intellectual disability, physical mobility, living situation, socio‐economic disadvantage, and behaviour and emotional problems were also conducted. Results: Participants in the ACAD community sample with intellectual disability participated in sport/physical activity at lower rates than the general Australian population (42% compared with 71%). Having no physical mobility impairment was significantly associated with higher rates of participation. Those with Down syndrome participated in sport/physical activity at higher rates than the community sample with intellectual disability, while no difference in sport/physical activity participation was observed in the groups with autism or other syndromes. Conclusion: Australian adults with intellectual disability participate in sport and physical activity at lower rates than the general population. Having a physical mobility impairment was associated with lower rates of participation. However, people living in supported accommodation were more likely to participate than those in other living situations. Having Down syndrome was associated with a higher participation rate than the community sample. [ABSTRACT FROM AUTHOR]

Background: There is paucity of research from Australia about comorbidity in older people with intellectual disability (PwID). This paper examines the burden of chronic diseases and associated sociodemographic correlates in a cohort of PwID aged 60+. Methods: A cross‐sectional survey was used with community‐dwelling older PwID in urban/rural regions of two Australian states. Recruitment was undertaken via a multi‐prong approach and each subject (N = 391; 236 urban/155 rural) personally interviewed. Results: Findings show older PwID experience considerable multimorbidity (X = 3.8; 53.5% had 2–6 conditions). Conditions included arthritis (40%), diabetes (26%), cardiovascular diseases (23.6%), asthma (16.1%), carcinomas (10.0%) and mental health disorders (34.5%). Conclusions: There was significant multimorbidity in older PwID, with evolution of life trajectories of select conditions associated with socioeconomic disadvantage and heath facility access barriers. Greater scrutiny of progressive health debilitation leading into older age and increased engagement by healthcare systems is required earlier in the lives of PwID. [ABSTRACT FROM AUTHOR]

Background: There is limited research quantifying the direct and indirect economic costs associated with intellectual disability (ID) in Australia. Costs incurred by families, governments and broader society include time spent providing care, absenteeism and increased healthcare utilisation. The purpose of this research is to quantify the costs associated with ID in childhood using a range of methods to collect cost data. Methods: Costs included healthcare service utilisation, pharmaceutical use, caregiver productivity losses and time spent providing care because of the child's disability. The sample comprised caregivers with a child with ID aged between 2 and 10 years old recruited in Australia. Healthcare service utilisation and pharmaceutical use were obtained from routinely collected administrative claims data. Healthcare utilisation not captured in the routinely collected administrative data and absenteeism data were obtained from a retrospective recall‐based questionnaire. Time spent providing care because of the child's disability was obtained using a time‐use diary. Results: The total cost of ID in Australia was estimated to be AUD 72 027 per year per child, and the total cost of ID in childhood was estimated to be AUD 12.5 billion per year. The cost to governments of ID in childhood was estimated to be AUD 6385 per child per year, resulting in a total cost to government of AUD 1.1 billion per year. Conclusions: This is the first study to estimate the direct and indirect costs associated with ID in childhood. The results of this research demonstrate the considerable economic impact of ID in childhood on families, governments and broader society in terms of both direct and indirect costs. An understanding of the cost implications of any intervention are critical in assisting policymakers in planning and prioritising of health services. [ABSTRACT FROM AUTHOR]

Aim: To compare hospital admission patterns after the first year of life in Australian children with developmental disabilities and children with no known disability, according to maternal country of birth and Indigenous status.Method: This was a retrospective cohort study using linked data across health, disability, and hospital admission databases. The study investigated 656 174 children born in Western Australia between 1983 and 2008 with a total of 1 091 834 records of hospital admissions.Results: Children with no known disability born to Indigenous mothers had the highest rate of hospital admissions compared to children of non-Indigenous mothers. Children of foreign-born mothers from low-income countries had the highest rate of hospital admissions if disability was present. Children with cerebral palsy (CP) with or without associated intellectual disability had the highest rate of hospital admissions among children with developmental disability, especially if mothers were foreign-born.Interpretation: Children with CP and intellectual disability, particularly from minority backgrounds (Indigenous Australian and foreign-born mothers), were at higher risk of being admitted to hospital after the first year of life.What This Paper Adds: Hospital admissions in Australian children with and without disabilities differ according to maternal country of birth. Hospital admission rates in children without a developmental disability were greatest for Australian-born Indigenous children. Disabled Australian-born children of foreign-born mothers from low-income countries had the highest hospital admission rates. Hospital admission risk was greatest for Australian-born children with cerebral palsy, especially if mothers were foreign-born. [ABSTRACT FROM AUTHOR]

Investigates the stress and quality of life in parents youth of with intellectual disabilities in Australia. Correlation between stress and quality of life; Reasons for dissatisfaction among natural parents than adoptive parents of individuals with intellectual disabilities; Implications for policy-making decisions.

Background Despite awareness of the health inequalities experienced by people with intellectual disability, their health status remains poor. Inequalities in health outcomes are manifest in higher morbidity and rates of premature death. Contributing factors include the barriers encountered in accessing and receiving highquality health care. Aims This paper outlines health inequalities experienced by people with intellectual disability and focuses on the opportunities medical education provides to address these. Strategies to ensure that health professional education is inclusive of and relevant to people with disabilities are highlighted. Conclusions The barriers experienced by people with intellectual disabilities to the receipt of high-quality health care include the attitudes, knowledge and skills of doctors. Improving medical education to ensure doctors are better equipped is one strategy to address these barriers. Improving health enhances quality of life, enables engagement and optimizes opportunities to participate in and contribute to the social and economic life of communities. [ABSTRACT FROM AUTHOR]

This paper is about older people with learning disabilities who live in the country in Australia. We talked to both individuals and their carers to find out what things helped them they got older, and what things made it harder. These people said that they were well supported by the local community and particularly their doctors. However, many people in this project also reported problems about living in the country such as limited choices and being forced to make decisions they did not like. Access to support services in rural areas is known to be problematic both in Australia, and in other countries around the world, but the majority of research on the population of people ageing with learning disability has so far focussed on metropolitan residents. The authors report about select aspects of the lived experience of older adults with learning disability resident in rural locations in two states of Australia. This pilot project examined data drawn from 34 semi-structured interviews conducted with 17 older adults and 17 carers. Responses were analysed for thematic areas. It was observed that the capacity of certain rural areas to support meaningful choice-making was limited due to constraints of access to key services, including community-based aged care, generic and specialist health services, and both supported disability and aged-care residential options. Responses indicated that those living in both small- and medium-sized congregate care settings (such as group homes and residential aged-care facilities) had more limited choices and only partial (if any) control over their living situation. An understanding of the needs of older adults with learning disability resident in rural areas is important to ensure that both aged-care and disability support structures are built on individuals' needs. [ABSTRACT FROM AUTHOR]

Accessible summary • In this study we asked six young people with intellectual disabilities what they thought about becoming independent in their families. • One person wanted more independence within her family and sometimes this caused fights. Three people were happy with the independence they had in their families and did not want things to change. Two people, with the help and support of their families, were trying to be more independent. • Families play an important part in young people becoming more independent. It was important for this group of young people for their families to understand and support their points of view. There is a small but expanding literature about the transition to adulthood for young people with intellectual disabilities. However, voices of young people with intellectual disabilities are under-represented. This study explored the perspectives of young people with intellectual disabilities on their transition to adulthood, focusing particularly on the process of negotiating autonomy within the family. This exploratory study employed a life history approach, involving six young people with mild intellectual disabilities, aged 18–25 years, and two waves of responsive interviews. First interviews explored participants’ life roles, relationships and goals. Second interviews focused on the process of negotiating autonomy within the family. Three approaches to negotiating autonomy within the family were identified: defiant, passive and proactive. The particular approach taken by each participant was associated with the level of congruence between their perceived and desired levels of autonomy and parental support. The study suggests that the transition to adulthood for young people with intellectual disabilities and their parents is not inevitably conflict-ridden. Parents and professionals may support young people with intellectual disabilities through this life stage by including them in family and service decision-making, and by supporting them to take on varied and valued roles and responsibilities within the family and community. [ABSTRACT FROM AUTHOR]

Background Typically people with intellectual disability have small, highly restricted social networks characterized by interactions with other people with intellectual disabilities, family members, and paid workers. The goal of ‘inclusion’ has been central to policies that have shaped services over the past 30 years. It is an ill defined concept with disagreement about its meaning, the problems it seeks to overcome and how it should be realized. Method Ethnographic and action research methods were used to support and collect data on the implementation of a programme, known as the Community Inclusion Framework, in a group home for five adults with severe intellectual disabilities in Victoria, Australia. Results and Conclusions A pattern of service delivery based on community presence rather than participation evolved and endured over 16 months. The findings show that most staff attached a different meaning to inclusion from that proposed in the Community Inclusion Framework, disagreed with the proposed meaning or felt these residents were too different for it to be meaningful. This suggests that priority will only be accorded to activities that lead to inclusion if staff are convinced of the veracity of this and given strong and consistent direction and support. [ABSTRACT FROM AUTHOR]

Dental caries and obesity‐associated chronic diseases are an additional burden to people with intellectual disabilities and one which can be reduced. To determine the association between dental caries and body mass index (BMI) among Special Olympics (SO) athletes. At the National SO Games (2014), three volunteer dentists screened consenting SO athletes (n = 116; 15–57 years old) and recorded decayed (D), missing (M), filled (F) teeth and caries experience (DMFT > 0). Volunteer‐accredited sports dietitians measured BMI as underweight (<18.5), normal (18.5–24.9), overweight (25.0–29.9), and obese (≥30) or used World Health Organization (WHO) classification of BMI‐for‐age for those under 19 years of age. The prevalence of decayed teeth was 16% and the mean DMFT was 4.0. About 40% of SO athletes had one or more missing and filled teeth. A third of the SO athletes had normal weight (33%), and the rest were overweight (40%) or obese (27%). Missing teeth and caries experience were significantly associated with higher BMI (χ2, p < .05). A more efficient common risk factor approach that simultaneously targets both dental caries and obesity should be adopted to improve the oral health and general health of SO athletes and the larger, more vulnerable population of people with intellectual disability. [ABSTRACT FROM AUTHOR]

Australia's national legislation and policy have affirmed the right of children with disability, including developmental disabilities to inclusive education. Yet, policy reviews and empirical research have raised concerns about the misalignment between inclusive policy and practice across Australian states. Drawing from these sources, this article endeavors to reflect upon the divide between the Australian policy on inclusive education and inclusive practice by considering the advances, obstacles, and challenges in achieving systemic inclusive education in the Australian education context. In the last part, we offer four propositions that could close the gap between policy and practice and enable students with developmental disabilities to have access and be successful learners in their local mainstream school. [ABSTRACT FROM AUTHOR]

Background Subjective wellbeing (SWB) in people with intellectual disabilities has been the focus of increased interest in the identification of support needs and as an outcome measure for interventions and service delivery evaluations. It is therefore important to conduct further research in this area, and to develop appropriate scales to measure SWB. Methods A new scale, the Personal Wellbeing Index-Intellectual Disability (PWI-ID) was administered to 114 adults with mild ( n = 82) or moderate ( n = 32) level ID in Victoria, Australia. Results The PWI-ID demonstrated good reliability and validity. A comparison of the findings with previous research indicates that participants’ SWB levels are within the normative range, and are similar to those reported by the general population. Conclusions The results support the notion that individuals with ID do not experience life quality lower than normal, which can be explained theoretically by the Theory of Subjective Wellbeing Homeostasis. The use of the PWI-ID may ultimately assist in ensuring that the needs of people with ID are being met and inform the planning and delivery of congruent resources and services. [ABSTRACT FROM AUTHOR]

Background Personality dimensions such as openness and agreeableness have been found to be associated with prejudice levels towards several minority groups. Yet these variables have been mostly ignored by existing research into attitudes towards people with intellectual disability ( PWID), which has primarily focused on contact and demographic variables. The current study investigated the relationship between personality dimensions and attitudes toward PWID. Methods An online survey was completed by 466 adult participants recruited through a variety of sources. The survey consisted of a well-validated attitude survey, the Big Five inventory, contact related and demographic questions. Results The hypothesis that higher levels of the personality dimensions openness and agreeableness would be significantly associated with positive attitudes towards PWID was supported. However the effect was relatively weak and the strongest predicting factor of positive attitudes was increased quality of contact with PWID. More positive attitudes were also associated with females, more highly educated and younger participants. Conclusions Results provide support for an integrated (including person and situational factors) theoretical approach to attitudes research in this field. Practically, results support programmes that stimulate and promote quality interactions between PWID and the wider community. [ABSTRACT FROM AUTHOR]

This study describes the understanding, experiences and expectations of families living in rural and remote Australia regarding core concepts relating to disability service provision, including person‐centred practice (PCP), family‐centred practice (FCP), transdisciplinary practice (TDP), choice, control, inclusion, and equity. Thirteen parents or carers, each with a child with an intellectual disability aged between 6 and 16 years, living in rural and remote areas as described by the Australian Standard Geographical Classification – Remoteness Area (ASGC‐RA) and Modified Monash Model (MMM) – were recruited through distribution of flyers (hard copies or by email) to clinicians, schools, and advocacy agencies. Semi‐structured interviews were conducted with participants either in‐person or via telephone between July and October 2015. Data were analysed using thematic analysis. Participants reported that their understanding of many of the disability principles (PCP, FCP, choice, control, inclusion, and equity) was different from providers, and that many providers struggled to understand families, and therefore they did not share meaning of the principles of best practice disability supports. Families did not identify transdisciplinary practice as a core issue or tenet of effective service delivery. Families also reported experiences of missing out on services, feeling a sense of isolation in their communities, struggling to access skilled therapists, and difficulty finding supports and goals that were relevant to their child. The quality of supports that these families accessed was often below the standard that they expected. They did not expect that support standards will change in rural and remote Australia, so many have very low expectations of the National Disability Insurance Scheme (NDIS) in the future. Although more data will need to be collected as the NDIS and its markets mature, these data show that many rural and remote participants and their supporters have a variety of concerns about how they will access quality allied health services through the Scheme. [ABSTRACT FROM AUTHOR]

Background: Little is known about how older parent caregivers from culturally and linguistically diverse (CALD) backgrounds experience caring for their family member with intellectual disability into late life. Method: In‐depth semi‐structured interviews were carried out with N = 19 family caregivers aged 50–91 from ten Italian and four Greek families. The Sociocultural Stress and Coping Model was used as a framework to interpret their experiences. Results: A number of stressors including the need to make sacrifices, physical and emotional demands, uncertain futures and challenges associated with "the system" were identified. While family members play a key role in providing support, changing values around filial responsibility were evident. Discussion: Further attention needs to be given to CALD families to address challenges associated with caring for their family member with intellectual disabilities as they age. This study also challenges assumptions that CALD families prefer to keep caring within the family long‐term. [ABSTRACT FROM AUTHOR]

Introduction: Conceptualisation of occupation requires understanding of subjective wellbeing and experiences of occupation. Opportunities for participation in productivity activities, such as employment, may be limited for people with intellectual disability (ID). An occupational wellbeing framework was recently re‐imagined to focus on the subjective meaning of a person's occupational life rather than occupational performance. This study analysed experiences and possible benefits to occupational wellbeing of young adult men with ID in an intergenerational mentoring program based on Australian Men's Sheds using this revised occupational wellbeing framework. Methods: A qualitative approach was used to gather individual semi‐structured interviews at the end of an intergenerational mentoring program to explore occupational wellbeing experiences. Eight individual mentees and five parents of mentees (n = 13) from the different Men's Sheds sites agreed to participate in an individual interview about their experiences of the program. All mentees were male aged between 17 and 24 years. Family members included four female mothers and one male father. Data were highlighted, selected and deductively coded using content analysis according to the five occupational wellbeing domains of the framework. Results: Mentees reflected upon their experience with their mentor, the program, activities and environment of the Men's Shed. Findings were organised in relation to each of the five domains of occupational wellbeing, including contentment, competence, belonging, identity and autonomy. Experiences of mentees and their family members reflected the positive impact of participation on each domain and occupational wellbeing, including opportunities for socialisation outside of the program, mastery of skills and knowledge and validation of belief in self. Conclusion: Mentees involved in an intergenerational mentoring program in Australian Men's Sheds report benefits of participation in activities that foster and increase occupational wellbeing experiences. The experience of such domains should be considered when attempting to understand the quality of life and function for people with disabilities. [ABSTRACT FROM AUTHOR]

The provision of appropriate education, training, and employment supports for incarcerated people is pivotal to mitigating the risk of recidivism, to improving rehabilitative outcomes, and to securing employment upon release. People with cognitive disability are disproportionately represented in prisons internationally. The vast majority of this group have significantly low levels of education, are unable to participate meaningfully in mainstream prison programs, are more likely to return to prison than their nondisabled peers and are generally excluded from the labor market. There is thus a significant need for specialized in‐prison education, training, and employment programs for this group. However, in Australia and internationally such programs are scant. There is also very little known about good policy and practice in this domain. We present findings from qualitative research conducted on one of the few specialist education, training, and employment program models for prisoners with cognitive disability in Australia. The findings suggest that a practice model informed by and delivered from a well‐considered theoretical base by a collaborative multidisciplinary team capable of adapting mainstream education, training, and employment programs in a flexible and culturally sensitive manner offers an opportunity to provide improved outcomes and greater equity for this highly disadvantaged group. The implications for policy and practice in this domain are discussed. We conclude that the expansion of appropriately designed education, training, and employment programs for prisoners with cognitive disability is critical to protecting the human rights and improving the life trajectories of this highly disadvantaged group. [ABSTRACT FROM AUTHOR]

Background: Children with intellectual disability (ID) frequently have significant educational, social and health care needs, resulting in caregivers often experiencing a wide range of negative effects. This paper aims to determine the impact of childhood ID on caregivers' health‐related quality of life (HRQoL) across co‐morbid diagnostic groups. The second aim of this study is to determine the risk factors associated with lower HRQoL in this population. Methods: Caregivers of a child with ID aged between 2 and 12 years old completed an online survey to determine their HRQoL using the EQ‐5D‐5L measure. They were also asked demographic questions and about their dependent child's level of behavioural and emotional difficulties. Results: Of the total sample of 634 caregivers, 604 caregivers completed all five questions of the EQ‐5D‐5L. The mean age of caregivers was 39.1 years and 91% were women. Caregivers spent on average 66.6 h per week caring for their child related to their child's disability. The mean EQ‐5D‐5L score of caregivers was 0.80 (95% confidence interval: 0.79, 0.82), which is below the estimated Australian population norms (mean utility score of 0.92) for the age‐equivalent population. Caregivers of children with autism spectrum disorders reported the lowest HRQoL (0.77, 95% confidence interval: 0.74, 0.79) of the five included co‐morbid diagnostic groups. Caregivers with a lower income, a perceived low level of social support and children with higher degree of behavioural and emotional problems were likely to have a statistically lower HRQoL. Conclusions: This is the first study to produce utility values for caregivers of children with ID. The utility values can be used to compare health states and can be used to inform comparative cost‐effectiveness analyses. Demonstrating that caregivers of children with ID have reduced HRQoL and that this is associated with the degree of behavioural and emotional problems has important policy implications, highlighting the potential for policy interventions that target behavioural and emotional problems to improve outcomes for caregivers. [ABSTRACT FROM AUTHOR]

Background: Accumulating evidence internationally points to an increased risk of crime perpetration and victimization among people with an intellectual disability (ID). This study aimed to examine the impact that comorbid mental illness had on the association between intellectual disability, crime perpetration and criminal victimization. Method: A case linkage methodology involving 2,220 individuals with an intellectual disability from an Australian State. Results: One in four (27%) had contacts with public mental health services; 8.2% had a comorbid mental illness. This "dual disability" group was between 2.97 and 3.22 times more likely than those with intellectual disability alone to have a history of criminal charges, and between 2.76 and 2.97 times more likely to have been a victim of crime. Conclusions: The extent of criminality and victimization found among people with dual disability indicates a potentially multiply stigmatized group for whom the need for a coordinated cross‐agency service response remains paramount. [ABSTRACT FROM AUTHOR]

Background: Associations between oral and aural problems among children have been explored, but not among adults with intellectual disability (ID), where often, oral and ear pain can be difficult to diagnose.Methods: Data included Special Smiles and Healthy Hearing screenings from two Special Olympics (SO) events held in Australia (2013-2014).Results: The SO athletes had poor oral health with a high prevalence (56.8%) of gingival signs and unmet dental needs (66.9%). Over one-third (33.9%) had partially/completely blocked ear canals, over one-fifth (20.7%) had possible middle ear problems, and almost one quarter (23.8%) had some hearing loss. No associations between oral and aural problems were found in the small sample (n = 130) of SO athletes.Conclusions: Although SO athletes have unmet needs for both oral and aural health, access to appropriate hygiene care is an important preventive factor that athletes, families, and carers should be made aware of. Regular oral and aural screenings are recommended to identify problems early, because ability to communicate pain and discomfort can be different for this population. A larger sample of SO athletes with tooth and sextant level data could clarify the association between oral and aural problems in people with ID. [ABSTRACT FROM AUTHOR]