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Background: There is a need to systematically compare and contrast mortality predictors and disparities in people with intellectual disabilities (ID) for global prevention strategy development. Method: Bibliographic databases and grey literature were searched using systematic review methodology and the machine learning tool "Abstrackr." Results: Fifty-four relevant articles and reports published from 2010 to 2019 were identified. Nearly all (n = 53) were from high-income countries. Mortality disparities were apparent and consistent across countries and publication years, with no evidence of a decrease over time. People with ID can still expect to live 12-23 years less than the general population and are particularly vulnerable to deaths from respiratory infections and epilepsy. Conclusions: Both population and individual-level approaches to prevention are indicated to tackle the continuing mortality disparities in people with ID, including consideration of reasonable adjustments in general population efforts to reduce health inequalities.

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]

People with intellectual disabilities and their families are increasingly being asked to provide input into the services they receive. Under the aegis of the United Nation Convention of the Rights of Persons with Disabilities, support plans crucially depend on a participant's articulation of his or her preferences and life goals. Yet, research highlighting the strengths and weaknesses of different methodological approaches has not been published. This study compared the results of a suite of qualitative methods (questionnaire, focus group, semi-structured interview, "case in point" ethnographic observation, photographic images, and carer proxy response) by identifying the advantages and disadvantages of each method employed. It also foregrounds an effective mix of methods that is likely to produce an adequate representation of the views of people with disabilities within the context of open-ended exploratory questions.

The objective of the study was to validate adapted versions of the Glasgow Anxiety Scale for people with Intellectual Disabilities (GAS-ID) simultaneously developed in English and French. A sample of 361 youth with mild to moderate intellectual disability (ID) (M = 15.78 years) from Australia (English-speaking) and Canada (French-speaking) participated in this study. The results supported the factor validity and reliability, measurement invariance (between English and French versions), a lack of differential items functioning (as a function of youth's age and ID level, but not sex in the English-Australian sample), temporal stability (over one year interval), and convergent validity (with global self-esteem and school loneliness) of a bi-factor exploratory structural equation modeling representation of the GAS-ID. The present study supports the psychometric properties of the English-Australian and French-Canadian versions of the adapted GAS-ID. [ABSTRACT FROM AUTHOR]

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]

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]

To validate a version of the Motives for Physical Activity Measure (MPAM) adapted for youth with intellectual disabilities (ID). A sample of 359 youth with mild to moderate ID from Australia and Canada respectively completed English and French versions of the MPAM-ID. Exploratory structural equation models supported the validity and reliability of the five-factor structure of the MPAM-ID, as well as the weak, latent variance-covariance, and latent mean invariance across linguistic versions. Additional results supported the partial strong and strict invariance of most MPAM-ID items across linguistic versions. The results also supported the complete measurement invariance of the MPAM-ID over time and revealed a lack of differential item functioning (DIF) as a function of youth's age, body-mass index (BMI), ID level, and frequency of sport involvement (FSI). However, partial DIF was found as a function of youth's sex. Additionally, latent mean differences in MPAM-ID's factors were found as a function of youth's ID level, sex, and FSI. Finally, results supported the convergent validity of the MPAM-ID factors with a measure of perceived physical abilities. The MPAM-ID can be used among English- and French-speaking youth with ID irrespective of their age, BMI, ID level, sex, and FSI. We propose English and French adaptations of the Motives for Physical Activity Measure for Youth with Intellectual Disabilities (MPAM-ID). The MPAM-ID was able to identify the same motives as the original measure. The MPAM-ID will facilitate the assessment of motives for physical Activity in cross-sectional and longitudinal studies. The MPAM-ID will facilitate the assessment of motives for physical Activity among English- and French-speaking youth with ID. The MPAM-ID could be used to compare youth motives for physical Activity as a function of their age, body-mass index, ID level, and frequency of sport involvement. [ABSTRACT FROM AUTHOR]

This study proposes a revision (R) of the Center for Epidemiologic Studies Depression Scale for youth with ID (CESD-ID) in English and French. 346 youth (36.02% girls) with mild (51.26%) and moderate (48.78%) ID (11–22 years; M = 15.69), enrolled in secondary schools in Canada (French-speaking; n = 115), and Australia (English-speaking; n = 231), as well as their parents and teachers, participated in this study. Results support the reliability, factor validity, equivalence (sex, ID level, comorbidities, and country), and convergent validity (with youth-, parent-, and teacher-rated measures of depression, anxiety, and loneliness/social isolation) of the CESD-ID-R. The CESD-ID-R allows youth with ID to provide a reliable and valid assessment of their depressive mood and happiness suitable for epidemiological studies. [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]

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: 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]

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]

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]

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]

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]

Background: People with intellectual disability and chronic and complex support needs often require unique models of care that are intensive and expensive. How these supports can be continued within a rapidly changing policy and funding context in Australia, has not been fully determined. Method: This descriptive study utilised a retrospective electronic case-file audit design. Demographic details, chronic health conditions, medications, behaviours of concern, and overall support needs profile were mapped for 41 participants. Results: The profile is one of an ageing cohort, with high levels of chronicity and polypharmacy that requires a specialised workforce to fully meet their support needs. Conclusion: As the people with ID in this cohort age, the training needs of the current and future workforce will need to adapt as different issues become more prominent. How the national disability health and policy settings can best accommodate these support needs remains unclear. [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]

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

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]

People with a mental illness may be exposed to stigma which, when internalised, negatively influences self-esteem, personal goal attainment and quality of life. Avoiding the use of stigmatising language and using terminology that does not exclude the positive characteristics of the individual may play an important role in challenging stigma. This study involved a mixed method approach to identify the terminology preferences of people with a mental illness in Australia. N = 173 participants were recruited via convenience sampling. The humanistic terms 'individual' and 'person with lived experience' were identified as the preferred terms. Qualitatively there was a wide variation in how the terms made the respondents think or feel, with only one of the terms – 'survivor,' having solely negative themes. When contrasting the two most commonly used clinical terms, 'client' was significantly preferred to 'patient'. The term 'consumer' was one of the least preferred terms. This suggests that the use of this term, which is in regular use in Australia, should be reconsidered. [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]

Data linkage holds great promise for generating new information about people with intellectual and developmental disabilities (IDD) as a population, yet few centers have developed the infrastructure to utilize this methodology. Two examples, from Canada and Australia, describe their efforts in building data linkage capabilities, and how linked databases can be used to identify persons with IDD and used for population-based research. The value of data linkage is illustrated through new estimates of prevalence of IDD; health service utilization patterns; associations with sociodemographic characteristics, and with physical and mental health conditions (e.g., chronic diseases, injury, fertility, and depression); and findings on equity in medical treatments. Examples are provided of findings used for governmental policy and program planning. [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]

Background: Australian publicly funded mental health services play a significant role in the assessment and management of mental illness for people with intellectual disability. However, there is limited knowledge on their preparedness to meet the needs of this population. Method: Public mental health professionals (n=566) completed an online survey that explored their attitudes, confidence, and training needs in the area of intellectual disability mental health. Descriptive analyses were undertaken. Results: Participants agreed that people with intellectual disability have the right to receive good mental health care, and have the same access to their service. They viewed treating them as part of their role, but given the resources available it was not possible to provide comprehensive care. Participants reported low confidence in key clinical areas and insufficient training. Conclusions: A comprehensive workforce development strategy is required to facilitate the engagement and capacity of public mental health professionals in this area. [ABSTRACT FROM AUTHOR]

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 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 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 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 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]

Copyright of American Journal on Intellectual & Developmental Disabilities is the property of American Association on Intellectual & Developmental Disabilities and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Sampling design is critical to the quality of quantitative research, yet it does not always receive appropriate attention in nursing research. The current article details how balancing probability techniques with practical considerations produced a representative sample of Australian nursing homes (NHs). Budgetary, logistical, and statistical constraints were managed by excluding some NHs (e.g., those too difficult to access) from the sampling frame; a stratified, random sampling methodology yielded a final sample of 53 NHs from a population of 2,774. In testing the adequacy of representation of the study population, chi-square tests for goodness of fit generated nonsignificant results for distribution by distance from major city and type of organization. A significant result for state/territory was expected and easily corrected for by the application of weights. The current article provides recommendations for conducting high-quality, probability-based samples and stresses the importance of testing the representativeness of achieved samples. [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]

The practices of effective primary school teachers including students with Down syndrome in their mathematics classes are largely unexplored and many teachers feel unprepared to teach students with an intellectual disability. The authors sought to find out what these specific professional learning (PL) needs were and if they changed over time. A mixed methods study was undertaken to investigate the practices of primary mathematics teachers including students with Down syndrome in regular class lessons in two Australia educational jurisdictions. A variety of approaches was used to gain an understanding of their practices. Findings are based on responses to a questionnaire administered to teaching teams at the beginning and end of the school year. There was a strong endorsement of inclusion as an appropriate practice in primary mathematics. The PL needs of teaching teams changed across the teaching year. Early requirements concerned understanding Down syndrome and its impact on learning and behavior. As the school year progressed, PL needs changed toward a greater focus on the need for specific resources and strategies for teaching mathematics. The PL requirements of teachers included the need for 'in-time' support. The authors conclude that even if it may be infrequent when a teacher has a student with Down syndrome in a mathematics class, teachers still need access to PL that evolves across the school year, from less focus on syndrome-specific information to greater emphasis on teaching mathematics through adjusting learning outcomes and teaching approaches. [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]

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

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]

This paper describes the dynamics of support observed in the networks of nine adults with intellectual disability, developed by families who had committed to achieving a ‘good life’ for this person. Network members, including the person with a disability, participated in this longitudinal ethnographic study. Three principles that underpinned their work were positive and respectful relationships, mentorship and providing opportunities and expectations. Participants worked actively with other network members to develop higher levels of autonomy and social participation. [ABSTRACT FROM AUTHOR]

Background The aim of this study was to explore the way in which community living staff engaged with people with intellectual disability (ID) about dying and death. Method Guided by grounded theory methodology, focus groups and individual interviews were conducted with staff who had either no experience with client death, experience of a client sudden death, or a client death experience which was pre-dated by a period of end-of-life care. Results While in principle, staff unanimously supported the belief that people with ID should know about dying, there was limited in-practice engagement with clients about the topic. Engagement varied according to staff experience, client capacity to understand and the nature of the 'opportunity' to engage. Four 'opportunities' were identified: 'when family die', 'incidental opportunities', 'when clients live with someone who is dying' and 'when a client is dying'. Despite limited engagement by staff, people with ID are regularly exposed to dying and death. Conclusions People with ID have a fundamental right to know about dying and death. Sophisticated staff skills are required to ensure that people with ID can meaningfully engage with end-of-life issues as opportunities arise. [ABSTRACT FROM AUTHOR]