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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]

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]

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

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]

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

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]

Background: Informal carers often play an integral role in the lives of people with intellectual disability (ID) residing in the community. In this study, we explored the extent to which carers of people with ID believe that the health care needs of the person they care for are being accommodated by general practice. Method: Semi-structured interviews were conducted with 25 informal carers to people with ID living in Australia. Results: Carers of people with ID report that they experience considerable barriers to accessing general practice care on behalf of the people they care for. Conclusions: Given the ever-increasing number of people with ID now living in the community and their vulnerability to health problems, it is imperative that future research focuses on the development of strategies to overcome the barriers identified in this study. [ABSTRACT FROM AUTHOR]

Background: The cognitive and communication challenges experienced by people with intellectual disability present difficulties for health professionals, particularly in the face of illness and dying. Aim: To explore the experiences of specialist palliative care staff in talking with people with intellectual disability about their dying and death, and factors that influence these conversations. Design: An inductive thematic analysis was conducted on data from a larger qualitative semi-structured interview study. Setting/participants: Twenty palliative care staff from health services across Australia were interviewed. Participants were employed in multidisciplinary specialist palliative care teams and had provided palliative care to dying persons with intellectual disability. Results: Specialist palliative care staff did not consistently talk with people with intellectual disability about their dying and death. Conversations were influenced by (a) the perceived capacity of the person with intellectual disability, (b) experience and expertise of palliative care staff, (c) the relationship between palliative care staff and dying person and (d) values of palliative care staff and other caregivers (namely family members and paid carers). Conclusions: Specialist palliative care staff experience difficulties in talking with people with intellectual disability about their dying. Development of communication guidelines, resources and training for palliative care teams are urgently required to improve palliative care for this patient group. A more comprehensive research agenda on the needs of people with intellectual disability and their caregivers in palliative care is needed, with a particular focus on strategies to effectively communicate about dying and death. [ABSTRACT FROM AUTHOR]

Purpose: This qualitative research aims to explore staff perspectives on working effectively with people with intellectual disability who are in contact with the criminal justice system. Design/methodology/approach: Taking a case study approach, staff working for a third sector community organisation were interviewed about the components of effective work with their customers. The staff supported people engaged in the Community Justice Program. Findings: Staff consistently described relationship building as the most important part of their work. There were three components to relationship building: the process of relationship building, the elements of a high-quality staff–customer relationship and the staff skills needed to develop a good relationship. Originality/value: This paper makes two contributions to the literature. First, it focuses our attention on a third sector organisation supporting people in contact with the justice system as opposed to a formal criminal justice agency. Second, the paper seeks to understand the processes and skills staff deploy to build a high-quality relationship with criminal justice-involved people 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]

Parent-carers need support to continue to care for their child with significant disability in their home. There has, however, been little evidence that respite interventions have consistent or enduring beneficial effects on carer well-being. This article reports the findings of a qualitative study which adopted an Appreciative Inquiry philosophy to interview parent-carers of children with significant intellectual and/or developmental disabilities on how formal support services have helped them maintain their health and well-being, and disability support staff on how they help such parent-carers foster their health and well-being. We conclude that better communication and collaboration between service providers and users, more targeted training of workers, and embracing a person-centred and family-centred approach to respite services are needed. In addition, clearer definition and communication of the scope of respite services are required to best support families of children with significant disability in their home. [ABSTRACT FROM AUTHOR]

Background: Adults with intellectual disability (ID) experience poorer overall health than the wider population. Identification of personal, support service and lifestyle factors affecting health status will provide opportunities to improve health outcomes. Methods: The study was a cross-sectional survey of adults with ID. Interviews were conducted between January and July 2013. Univariate and multivariate analyses were performed using self- or proxy-reported general health as the dependent variable. Results: “Not good” health was independently associated with increasing age, financial hardship, smoking, and living in a home of their own. Physical exercise was inversely associated with not good health. Conclusions: Subjective health may be improved by attention to the factors identified in this study. This could include closer monitoring of the health of people with ID as they age and if they live in a home of their own. Similarly, targeted programs promoting physical activity and smoking reduction could improve general health for adults with ID. [ABSTRACT FROM AUTHOR]

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

Purpose Evidence from Australia and worldwide has highlighted the ongoing marginalisation, discrimination, abuse, violence and neglect of people with disability. One of the main areas of concern is that despite such evidence there remain fundamental barriers for people with disability to report violence and/or access supports. Significantly few studies have canvased the perspectives of people with intellectual disability (ID), family members or disability service providers. Accordingly as a first step, the purpose of this paper is to explore the perceptions of disability and violence-response professionals’ regarding the barriers and facilitators of effective support for people with ID reporting sexual violence and accessing mainstream supports.Design/methodology/approach A qualitative research design informed the basis of this study. Semi-structured interviews were conducted with seven participants who held roles within disability services and mainstream violence response. Interviews were recorded and transcribed. These transcripts were then analysed individually using a combination of thematic analysis and discourse analysis to bring to light the social and material structures within service systems in terms of how they disempower or empower supports for people with ID.Findings Participants from both services reported that professionals (particularly those outside the disability sector) lacked awareness of practical ways in which they could support people with ID to report and access services outside of disability-specific services. Participants also felt the capacity for people with ID to have a voice about what happens in the “aftermath” of reporting sexual violence was rarely acknowledged. Participants called for education and development of resources which could guide professional practice across disability and wider violence-response services. Participants saw investment in building interagency relationships across sectors as key to supporting the citizenship of people with ID.Originality/value This study suggests that there is a strong need for better community engagement and understanding of the multi-faceted issues surrounding responses to violence concerning people with ID. The findings of this study also outline implications for practice and policy which may be of interest to professionals both within disability and wider violence-response sectors in Australia and internationally. [ABSTRACT FROM AUTHOR]

Workplace health promotion (WHP) and the general wellbeing of workers in the Australian workforce should be a priority for all management. Our study argues that management support for workers with an intellectual disability (WWID) can make a difference to their health promotion and ultimately their participation in the workforce. We adopt a qualitative approach, through semi-structured interviews with 22 managers, across various organizations, to examine their perspectives around the WHP of WWID. We integrate the key values of WHP; rights for health, empowerment for health and participation for health (Spencer, Corbin and Miedema, Sustainable development goals for health promotion: a critical frame analysis, Health Promot Int 2019;34:847–58) into the four phases of WHP interventions; needs assessment, planning, implementation and evaluation (Bortz and Döring, Research Methods and Evaluation for Human and Social Scientists, Heidelberg: Springer, 2006) and examine management perspectives (setting-based approach) on WHP of WWID. Where this integration had taken place, we found some evidence of managers adopting more flexible, innovative and creative approaches to supporting the health promotion of WWID. This integration seemed to drive continuous improvement for WWID health promotion at the workplace. We also found evidence that some organizations, such an exemplar film company, even over deliver in terms of supporting WWID needs by encouraging their capabilities in film making interventions, whilst others are more direct in their support by matching skills to routine jobs. Our approach demonstrates that incorporating key WHP values into the four-phase WHP framework is critical for the effective health promotion of WWID. [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]

Gender has often been overlooked in the lives of people with intellectual disability, resulting in a limited understanding and service response. This is in part due to a lack of knowledge about the way people with intellectual disability negotiate and build a gendered identity. In this article we present research undertaken with six young women with an intellectual disability who worked with the first researcher to co-develop some stories from their lives. We show how, facilitated by an innovative method which focused on meaningful engagement, the women told stories of richly gendered lives and subjectivities. Their stories showed how gender can be a desired and productive subjectivity, and how consideration of gender can help to identify resistance and agency in their lives. Their stories illustrate how gender is necessary in forming a comprehensive understanding of the lives of women with intellectual disability. [ABSTRACT FROM AUTHOR]

The role of support workers in self-advocacy groups is complex. The lack of transparency about who controls the agenda within groups is problematised by commentators but the evidence is limited about how supporters act, exercise power and are regarded by self-advocates. This study investigated the work of supporters in independent self-advocacy groups and how their work was understood by members. Grounded theory methodology was used. Semi-structured interviews were conducted with 25 members of 6 independent self-advocacy groups, in Australia and the UK, and 10 supporters. Supporters had three roles: supporting empowerment, managing operations, and leading strategic planning. They exercised power, controlling many group activities, but did so in ways that enabled groups to flourish, and scaffolded members' sense of control. Supporters shaped groups, developing and resourcing them while promoting empowerment and enabling self-advocates to perceive partnerships; regarding supporters work as complementary to their own. [ABSTRACT FROM AUTHOR]

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

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]

The present study aimed to explore which instructional methods are used in inclusive classrooms for teaching mathematics to students with mild intellectual disability (ID) and whether individualised accommodations can influence their learning. The action research project involved five adolescent participants with mild ID and three maths teachers at an independent secondary school in Australia. A range of qualitative data drawn from semi-structured interviews with all participants, classroom observations and learning support plans was collected over a period of 8 weeks. The analysis of students' voices revealed that, despite their frustration and discouragement in this subject, they can understand and articulate suitable adjustments to enhance their learning in mathematics. Furthermore, it became clear that although teachers had good intentions, heavy time demands hindered their ability to plan effectively and transform their pedagogical approaches. [ABSTRACT FROM AUTHOR]

Purpose – While ageing with an intellectual (learning) disability has been subject to increased research in recent years, there remains little knowledge regarding the daily practice issues that disability workers struggle most to support in this cohort. The purpose of this paper is to gain feedback directly from staff regarding the problems they experience in daily work, and to evaluate whether any changes to legislation or practice could potentially alleviate identified areas of concern. Design/methodology/approach – A Delphi project was conducted over three rounds with participants from rural areas of New South Wales (NSW). The panel was composed of support workers who assist people ageing with a learning disability. Participants were asked their perceptions of the main practice issues facing them while they provide support. Findings – The panel identified 29 issues that were considered problematic in the provision of support to people ageing with a learning disability. A thematic analysis indicated three main themes of access to services; time constraints; and funding. Research limitations/implications – The participants in this study were all disability workers employed by non-government organisations in rural NSW, and as such, many of the issues identified may be specific to this population cohort and geographic setting. Any generalisation of these results to other locations or populations must be considered within these limitations. Originality/value – Identification of the issues facing disability staff may facilitate government, health care providers and disability organisations to proactively plan to address current and future problem areas. The consequent effect of improving practices can assist individuals to receive better support and lead to a corresponding improvement in their quality of life. The current implementation of the National Disability Insurance Scheme in Australia is an ideal opportunity for cross-sectoral collaboration to change practice to facilitate better support for a highly vulnerable group of the 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]

Background: Research into parents' experiences of living with a family member with intellectual disability and challenging behaviour does not specifically address what parents say about themselves and their lives. This paper explores "I-statements" parents made about their day-to-day actions in life with their family member. Methods: Semi-structured interviews were conducted with 26 parents, of which 91% were mothers. "I-statements" were analysed using process analysis from systemic functional linguistics and thematic analysis. Results: "I-statements" showed that parents enacted a range of complex and sometimes extreme activities across a variety of life domains. Parents spoke about: managing relationships with services; educating themselves and others; seeking support; resisting poor service delivery; assisting others; and making both small and significant changes. Conclusion: The paper provided insights into the complex lives of these families and offered observations on the implications of the potential misalignment between the supports the data suggests are needed and those that, in reality, are available to them. [ABSTRACT FROM AUTHOR]

The number of older parents ageing in tandem with their adult children with intellectual disability (ID) is increasing. This unique situation calls for greater research that investigates how older parents experience this extended care-giving role, including the extent to which they are engaging in futures planning. Participants were recruited via disability service providers in South Australia. Using the theoretical perspective of hermeneutic phenomenology to understand lived experiences, semi-structured in-depth interviews were carried out with older parents (N = 17, mean age 70 years). Six offspring were living in the family home while the remainder were in supported accommodation. Main themes to emerge from the data were: (a) perpetual parenting, (b) costs and rewards and (c) planning to plan. Parents were providing care across a range of areas, regardless of whether their offspring lived at home or in supported accommodation. While aware of the need to plan for the future, most did not have a firm plan in place. Parents are providing a high level of support to their adult children with ID regardless of whether they live in supported accommodation or the family home. While some have started to think about future care arrangements, most appear unclear over what the future holds. [ABSTRACT FROM AUTHOR]

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Purpose The purpose of this paper is report on a study exploring the views of service providers, both within disability service sectors and in mainstream violence response sectors, about ways of effectively supporting people with intellectual disability who may be experiencing abuse and violence.Design/methodology/approach Semi-structured interviews were conducted with seven participants and analysed both thematically and in more depth from a socio-ecological perspective.Findings Participants highlighted five key factors facilitating or hindering professionals working with individuals with intellectual disability who may be experiencing abuse and violence: connecting clients with services and establishing a rapport; access to information about histories of trauma; policy context; inaccessibility and unavailability of mainstream violence response services; client understanding of what happens “next” after identification of harm.Originality/value Overall the study indicates a strong need for the development of resources, information and tools designed to educate and enhance the understanding of professionals supporting people with ID and to better facilitate learning and understanding for people with ID regarding what happens “after” disclosure of sexual violence or other experiences of harm. [ABSTRACT FROM AUTHOR]

Background Studies incorporating staff-rated or observational measures of practice leadership have shown that where practice leadership is stronger, active support is better implemented. The study aim was to compare measures of practice leadership used in previous research to determine the extent of their correspondence.Method A subset of data from a longitudinal study regarding 29 front-line managers working across 36 supported accommodation services in Australia was used. An observed measure of practice leadership, based on an interview and observation of a front-line manager, was compared with ratings of practice leadership completed by staff. The quality of active support was rated after a 2-hour structured observation.Results Correlations between staff-rated and observed measures were nonsignificant. Only the observed measure was correlated with the quality of active support.Conclusions This study provides evidence to support using an observational measure of practice leadership rather than reliance on staff ratings. [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]

Aim: To explore family member and staff perceptions of clients' experiences of stigma and discrimination, in those living with severe and persistent mental illness in an Assertive Community Treatment Team. Method: This qualitative study used the Discrimination and Stigma Scale to conduct structured face-to-face and telephone interviews of family members and healthcare professionals, working with the Assertive Outreach Team (AOT) (an Assertive Community Treatment Team) of a northern inner suburban catchment of Sydney, New South Wales, Australia. Results: Forty-one people participated in the study (23 AOT clinical staff members and 18 family members). Family and clinical staff commonly reported stigma and discrimination amongst their relatives and clients, respectively. Four overarching themes emerged from the data: (1) appearance and behaviour, (2) avoidance and being shunned, (3) key areas of life affected by discrimination and (4) impacts of discrimination and skills to cope with discrimination. Conclusion: Reports of stigma and discrimination were common, yet varied between groups with clinical staff commonly witnessing experiences and impacts of discrimination in everyday life, with families' reports being substantially less. Due to the strong advocacy and support provided by the AOT model, clinical staff often buffered experiences of stigma and discrimination. Further research is needed to explore effective interventions to reduce experiences of discrimination in this population group. [ABSTRACT FROM AUTHOR]

Background Increasing life expectancy for people with intellectual disability is resulting in greater need for end-of-life care services. However, limited knowledge is available regarding what barriers to accessing end-of-life care support are evident, particularly comparatively across rural and metropolitan locations. Methods Focus group interviews were undertaken with 35 direct-care staff from four rural and two metropolitan locations. A semistructured interview guide was used, with a focus on health service access. All focus group data were independently transcribed, with thematic analysis then performed. Results Frequency analysis identified 262 statements relating to health services access. Thematic analysis identified four key areas of 'isolation,' 'support from doctors,' 'general health support access' and 'internal staffing issues.' Conclusions Improved access to end-of-life services is urgently required across both rural and metropolitan areas. Development of specialist training and support models for both disability and general healthcare staff may assist to reduce some identified barriers. [ABSTRACT FROM AUTHOR]

Purpose:This paper explains and demonstrates the pilot application of Triangulated Proxy Reporting (TPR); a practical technique for enhancing communication around people who have severe cognitive impairment (SCI). Methods and results:An introduction explains SCI and how this impacts on communication; and consequently on quality of care and quality of life. This is followed by an explanation of TPR and its origins in triangulation research techniques. An illustrative vignette explicates its utility and value in a group home for a resident with profound multiple disabilities. The Discussion and Conclusion sections propose the wider application of TPR for different cohorts of people with SCIs, their communication partners and service providers. Conclusions:TPR presents as a practical technique for enhancing communication interactions with people who have SCI. The paper demonstrates the potential of the technique for improving engagement amongst those with profound multiple disabilities, severe acquired brain injury and advanced dementia and their partners in and across different care settings.Implications for RehabilitationTriangulated Proxy Reporting (TPR) shows potential to improve communications between people with severe cognitive impairments and their communication partners.TPR can lead to improved quality of care and quality of life for people with profound multiple disabilities, very advanced dementia and severe acquired brain injury, who otherwise are very difficult to support.TPR is a relatively simple and inexpensive technique that service providers can incorporate into practice to improving communications between clients with severe cognitive impairments, their carers and other support professionals. [ABSTRACT FROM PUBLISHER]

Purpose The purpose of this paper is to produce the views of parents and siblings of adults with intellectual or developmental disability (ID/DD) around the use of psychotropic medication to manage challenging behaviour (CB) where there is no co-existing mental illness.Design/methodology/approach Seven family members of six adults with ID/DD were interviewed using semi-structured interviews, over the telephone or face-to-face. The interviews were transcribed, coded and thematically analysed.Findings This paper identified that if used appropriately, psychotropic medication to manage CB may be of benefit to some people with ID/DD; but there is a need to ensure the medication is prescribed for the benefits of people with ID/DD rather than those around them. Drawing on the knowledge of family may allow for the use of alternative strategies and the reduction of medication to manage CB. There is the need for improved communication with family members, inclusive decision making, and access to information regarding the philosophy and legislation regarding medication used to manage CB in adults with ID/DD.Originality/value This paper presents views of a small cohort of family members of people with ID/DD in Queensland, Australia. Findings can be used to improve approaches taken by service providers in their interactions with people with ID/DD prescribed psychotropic medication to manage CB, and their family members. [ABSTRACT FROM AUTHOR]

Disability support workers ( DSWs) are the backbone of contemporary disability support services and the interface through which disability philosophies and policies are translated into practical action. DSWs often experience workplace stress and burnout, resulting in a high turnover rate of employees within the non-professional disability service workforce. The full implementation of the National Disability Insurance Scheme in Australia is set to intensify the current challenges of attracting and retaining DSWs, as the role becomes characterised by greater demands, ambiguity and conflict. The aim of this study was to explore DSWs' perceptions of enjoyable and challenging aspects of disability support work, sources of stress and burnout and the strategies they use to cope when these issues arise. Twelve DSWs workers providing support for adults living with intellectual and physical disabilities were interviewed. Thematic analysis revealed a superordinate theme of 'Balance' comprising three sub-themes: 'Balancing Negatives and Positives', 'Periods of Imbalance', and 'Strategies to Reclaim Balance'. Participants spoke of the rewarding and uplifting times in their job such as watching a client learn new skills and being shown appreciation. These moments were contrasted by emotionally and physically draining aspects of their work, including challenging client behaviour, earning a low income, and having limited power to make decisions. Participants described periods of imbalance, wherein the negatives of their job outweighed the positives, resulting in stress and sometimes burnout. Participants often had to actively seek support and tended to rely on their own strategies to manage stress. Findings suggest that organisational support together with workplace interventions that support DSWs to perceive the positive aspects of their work, such as acceptance and mindfulness-based approaches, may help to limit experiences of stress and burnout. The further development and evaluation of emotion-focused workplace therapies, and interventions that consider organisational (macro) factors is suggested. [ABSTRACT FROM AUTHOR]

Background Improving staff performance is an issue in services for people with intellectual disability. Practice leadership, where the front line leader of a staff team focuses on service user outcomes in everything they do and provides coaching, modeling, supervision and organisation to the team, has been identified as important in improving staff performance. To date this finding is based only on self-report measures. Methods This paper describes and tests an observational measure of practice leadership based on an interview with the front-line manager, a review of paperwork and observations in 58 disability services in Australia. Results The measure showed good internal consistency and acceptable inter-rater reliability. Practice leadership was associated with staff practice and outcomes for service users. The observed measure of practice leadership appears to be a useful tool for assessing whether leadership within a service promotes enabling and empowering support by staff. It was found to discriminate higher and lower performing services in terms of active support. Conclusions The measure had good reliability and validity although some further testing is required to give a complete picture of the possible uses and Conclusions The measure had good reliability and validity although some further testing is required to give a complete picture of the possible uses and reliability of the measure. The measure is potentially useful in contexts of both research and service development. The confirmation of previous findings from self-report measures that practice leadership is related to the quality of staff practice and outcomes for service users has implications for policy and practice in terms of the training of managers and structures for organisational management. [ABSTRACT FROM AUTHOR]

Background The aim of this study was to explore what community living staff talked about and did with people with intellectual disability ( ID) to assist them to understand dying and death. Method Guided by grounded theory methodology, focus groups and one-to-one interviews were conducted with 22 staff who had talked about any topic relating to dying and death with their clients. Results There was little evidence that staff talked with, or did things with clients to assist understanding of the end of life, both prior to and after a death. Prior to death staff assisted clients in a limited way to understand about determining wishes in preparation for death, and what dying looks like by observance of its passage. Following a death staff offered limited assistance to clients to understand the immutability of death, and how the dead can be honoured with ritual, and remembered. Conclusions The findings have implications for why people with ID have only partial understanding of the end of life, the staff skills required to support clients' understanding, and when conversations about the end of life should occur. [ABSTRACT FROM AUTHOR]

Background This study reports on the feasibility of an intergenerational mentoring programme for youth with intellectual disability ( ID) aimed at developing skills and building networks. Methods Youth with ID were paired with older male mentors who were trained to support the mentees participate in activities and social interactions during weekly sessions. We interviewed the mentees and mentors, and assessed them on a range of outcomes using standardized measures. Results Interviews highlighted that the programme presented a great 'opportunity' for the mentees and mentors. The participants described facilitators and challenges to the acquisition of practical skills by mentees and the development of relationships between mentors and mentees, including communication, transportation and mentor training. The youth with ID had difficulty completing the self-report measures. Conclusions Mentoring programmes are viable to support youth with ID during the transition to adulthood; however, refinement is required in the rollout out of a pilot intervention. [ABSTRACT FROM AUTHOR]

Background Mothers with intellectual disability face socioeconomic disadvantage and social isolation, which is associated with poorer child outcomes. Social services feature prominently in the lives of mothers with intellectual disability especially those without informal support; however, the role of formal support in the lives of their children has not been explored. Methods Seven children aged 7-11 years took part in semi-structured interviews to explore their social experiences. Stories about interactions at home, school and with peers were analysed to illuminate influences, including social support, in their lives. Results Formal support can provide an enduring relationship for children from socially restricted homes when it focuses on the child's abilities, interests and needs as distinct from those of their mother. Child-focused support can be from a paid worker or volunteer. Conclusions Family support services need to apply a child focus to improve the well-being of children in vulnerable families. [ABSTRACT FROM AUTHOR]

Background A dimension of the culture in group homes is staff regard for residents. In underperforming group homes, staff regard residents as being not 'like us' (Bigby, Knox, Beadle-Brown, Clement & Mansell, 2012). We hypothesized the opposite pole of this dimension, in higher performing group homes, would be that staff regard residents positively. Method Three in-depth qualitative case studies were conducted in higher performing group homes using participant observation, interviews and document review. Results Consistent pattern of staff practices and talk, as well as artefacts, demonstrated staff had a positive regard for residents, who were seen as being 'like us'. Explicit and continuing attention was given to sustaining positive regard for residents in everyday staff practices and to turning abstract values into concrete realities. Conclusions This positive cultural norm was established, operationalized and embedded through structures, such as a formal policy about language, and processes such as peer monitoring and practice leadership. [ABSTRACT FROM AUTHOR]

Promoting community participation for people with intellectual disability through encounter with strangers is an integral part of the mission of disability support workers. This paper offers detailed micro-level analysis of the practices of support workers when they accompany a person with intellectual disability outside their home and explores the subtle differences which make some staff practices more effective than others in promoting more convivial encounters with strangers. Based on 160 h of observations of twenty-six adults with intellectual disability in a variety of public places, and interviews and focus groups with their support workers, the paper points to some of the critical judgements support workers need to make when considering whether, when and how to initiate or intervene in such encounters. [ABSTRACT FROM AUTHOR]

Objective: To systematically investigate the scope and nature of discrimination and positive treatment experienced by adults with mental health problems when using health services in an Australian population-based survey. Methods: Australian adults (n = 1381) who reported a mental health problem or scored high on a screening questionnaire were interviewed about their experience of discrimination and positive treatment from healthcare professionals. Descriptions of experiences were content-analysed to identify key characteristics. Results: In all, 11.8% of respondents reported discrimination from a health professional in the past 12 months. The most common types of discrimination included being treated dismissively, being judged and not being listened to, particularly regarding personal history and treatment needs. In contrast, 40.4% reported being treated more positively by their health professional because of their mental health problem. Key types of positive treatment by health professionals were being supportive and understanding and being a good listener. Good quality care approaches were also appreciated, including making a referral, being engaged in the treatment process, regularly checking the status of the person’s mental health and providing information. Conclusion: A minority of respondents with mental health problems had experienced discrimination from their healthcare professional, potentially interfering with recovery. Anti-stigma education interventions for healthcare professionals should address how to increase knowledge and understanding of mental health problems, reduce negative attitudes and encourage supportive behaviours. [ABSTRACT FROM AUTHOR]

Recruiting adults with autism spectrum disorders (ASD) into research poses particular difficulties; longitudinal studies face additional challenges. This paper reports on a mixed methods study to identify factors influencing the participation in longitudinal autism research of adults with ASD, including those with an intellectual disability, and their carers. Common and differentiating factors influencing the research participation of participants are identified and discussed. Factors influencing participation were found to differ both between and within participant categories. We propose a dichotomy whereby factors influencing research participation can be classified as those arising from a participant's values, which act as either a motivator or a deterrent; and those based on convenience, which act as either an enabler or inhibitor. These findings are applicable to research studies that seek to recruit adults with ASD as participants. [ABSTRACT FROM AUTHOR]

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

Background Social inclusion is a widely acknowledged goal; who is best positioned to provide support and how support is delivered are key questions. Using Active Mentoring training, members of community groups mentored a person with intellectual disability and supported their inclusion in that group. Methods Interviews with 14 mentors explored their experiences of supporting a previously unknown person with intellectual disability to participate in their community group. Findings The core theme was No Different From Us. Mentors saw beyond the disability, they valued others, were community leaders, and had intrinsic qualities. With some basic orientation to the task, mentors were able to support the inclusion of their mentee in the group. Conclusion Community members are willing to support people with intellectual disability to join their community groups. The Active Mentoring training is one way of harnessing the goodwill of community groups and their members to include people with intellectual disability to participate on an individual basis in community groups. [ABSTRACT FROM AUTHOR]

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