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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.

Background: 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. Method: 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. Results: 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. Conclusions: 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.

Background: Despite growing recognition of their right for inclusion in society, people with intellectual disabilities are often excluded from mainstream services, or experience poor service outcomes. Method: Taking a relational approach that considers the interpersonal relations and interactions that occur in mainstream service settings in Australia, this paper examines the features of services that research participants considered more inclusive. Results: Relations between service users with and without intellectual disabilities, mainstream service staff and disability support workers in inclusive mainstream services were characterised by; respect; warm, welcoming and convivial interpersonal engagement; active listening; proactive assistance; flexibility; mediation to create a safe environment; and collaboration and shared responsibility by both mainstream staff and disability support workers in supporting a service user with intellectual disability. Conclusions: Building on these results, we put forward a set of principles for facilitating inclusion of people with intellectual disabilities in mainstream services. [ABSTRACT FROM AUTHOR]

Background: Organisational culture in group homes for people with intellectual disabilities has been identified as an influence on service delivery and staff behaviour. The aim was to examine patterns of culture across group homes in disability organisations. Method: The Group Home Culture Scale (GHCS) was used to measure staff perceptions of culture. Data were available from 260 staff who worked across 58 group homes managed by eight organisations. Using scatterplots and measures of dispersion, the scores on the seven GHCS subscales were examined for patterns of integrated (i.e., similarities) and differentiated (i.e., variability) culture within the organisations. Results: Patterns of differentiated culture were found in six organisations for one or more GHCS subscales. Patterns of integrated culture were found in three organisations for one subscale. In two organisations, patterns of both integrated and differentiated culture were found. Conclusions: The findings contribute to the conceptualisation of and research into organisational culture in group homes, with implications for changing and maintaining culture.

Background: Building Circles of Support is an innovative strategy for developing natural support networks. This study explored some of the ambiguity in the conceptualisations, operational elements, and perceived outcomes of Circles of Support programs. Method: A comparative case study of three Australian Circles of Support programs was conducted. Data included document review and qualitative interviews with 27 key stakeholders. Qualitative analysis of the data from each program was analysed using categories of the program logic as a conceptual framework, followed by cross-case analysis to identify commonalities and differences. Results: Findings show conceptual variability between programs, which shared similar overarching intents but differed in program, strategies, target population and outcomes, which were shaped by the missions of the organisation of which they were part. Conclusion: Findings can inform the future design and evaluation of programs to support the development of informal support network for people with intellectual disabilities.

Background: "Convivial encounter" provides a new lens for understanding social inclusion of people with intellectual disabilities, characterised by shared activity and friendly interactions with strangers without intellectual disabilities. Places, props and support practices facilitate incidental convivial encounters. This study explored processes for deliberately creating opportunities for such encounters. Methods: A case study design used mixed methods to collect data from two disability organisations about convivial encounters the people they supported experienced and staff practices that created these. Results: Most commonly convivial encounters created involved repeated moments of shared activity through which people became known by name by others without disabilities. Eight approaches and five processes were used to create these opportunities for encounter. Conclusions: The study provides a blueprint for scaling up or creating interventions to create opportunities for convivial encounters, and opens lines of enquiry about staff competences needed and parameters for costing this type of intervention.

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: One would assume that infection outbreaks such as the COVID-19 pandemic have a deleterious effect upon the physical, mental, and/or social functioning of people with intellectual disabilities (ID). Methods: A systematic search of four databases produced 18 articles. General information pertaining to the topics under consideration, information related to infectious diseases and ID were extracted. Results: All but one of the studies investigated the impact of infection outbreaks on the physical functioning of people with ID. Although in some instances certain studies briefly reflected on the impact of infection outbreaks on mental or social functioning, there was no empirical data available. Conclusions: There is scarce scientific knowledge on the impact of infection outbreaks on the mental and social functioning of people with ID. This underscores the exigency for further psychosocial research to both explore the impact of infection outbreaks and develop strategies to deal with them in the future.

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: There is limited Australian research investigating health practitioner knowledge and/or confidence in the diagnosis and treatment of mental health disorders in people with intellectual disabilities (IDs). Method: Ninety-three health practitioners from four professional groups (primary health practitioners, psychologists, mental health practitioners, and alternative therapies) completed a 34-item online survey comprising questions designed to identify participant knowledge of disorders described in the Psychiatric Assessment Schedule for Adults with Developmental Disabilities and the Therapy Confidence Scale-Intellectual Disabilities. Results: Participants demonstrated low knowledge of symptomology and were "moderately confident" to "confident" working with people with IDs. Whilst professional group showed a significant main effect on confidence levels, post-hoc analysis did not detect significant differences between the individual professional groups. Conclusions: Australian participants demonstrated confidence, but low knowledge, in treating individuals with IDs. The development of training to address deficits in practitioner knowledge of symptomology, assessment, and assessment-based communication is recommended.

Background: Dedifferentiated policy treats adults with intellectual disabilities as part of the larger group of people with disabilities. The implications of the dedifferentiated National Disability Insurance Scheme (NDIS) for adults with intellectual disabilities are explored. Methods: Analysis of peer reviewed and grey literature between 2014 and 2020 about design of the NDIS and outcomes. Results: Many participants experienced problems with NDIS implementation. Outcomes for adults with intellectual disabilities compared poorly to other groups. They were disadvantaged by standardised planning processes relying on self-expressed needs and omission of supported decision making. As the NDIS matures, it is becoming more differentiated but issues relevant to adults with intellectual disability remain largely invisible. Conclusions: Further shifts towards standardised planning and functional assessment may be disadvantageous for adults with intellectual disabilities for whom support needs are dependent on social and contextual factors, and exercise of choice on support for decision making.

Background: There is strong evidence about the effectiveness of Active Support. Recent research has established predictors of good Active Support as staff training, practice leadership, and service setting size. This paper explores features of organisational leadership and structures predictive of Active Support. Methods: Multilevel modelling with data from surveys, observations and interviews was used to identify predictors of Active Support at the levels of service users (n = 253), services (n = 71) and organisations (n = 14). Results: Good Active Support was predicted by: (1) positive staff perceptions of management, (2) prioritisation of practice and Active Support by senior managers, (3) strong management support for practice leadership, (4) organisation of practice leadership close to everyday service delivery, and (5) concentration of practice leadership with frontline management. Conclusion: These findings extend understanding of predictors of Active Support and provide indicators of service quality, with important implications for service providers, service users and those monitoring the quality of services.

Background: Organisational and service level factors are identified as influencing the implementation of Active Support. The aim was to explore differences in organisational leadership and structures to identify potential relationships between these factors and the quality of Active Support in supported accommodation services. Method: Fourteen organisations participated in this mixed methods study, which generated data from interviews with senior leaders, document reviews and observations of the quality of Active Support. Results: Qualitative analyses revealed three conceptual categories: senior leaders in organisations where at least 71% of services delivered good Active Support prioritised practice; understood Active Support; and strongly supported practice leadership. In these organisations practice leadership was structured close to everyday service delivery, and as part of frontline management. Conclusions: Patterns of coherent values, priorities and actions about practice demonstrated by senior leaders were associated with successful implementation of Active Support, rather than documented values in organisational policy or procedures.

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.

Background: Nurses provide technical and relational skills that are integral to the care of people with intellectual disability (ID) in Australia. However, little is known about the demographic profile of this section of the nursing workforce. Method: Administration of a survey to nurses whose primary role it is to care for people with ID nationwide Results: This brief report provides a description of the demographics of participants in the national survey. Of 101 participants, 78% were women and the mean age was 53.21 years. Participants held a variety of educational qualifications to prepare them for the care of people with ID. Conclusion: The findings suggest the need to consider the future unmet needs of people with ID given the ageing of this workforce. The ongoing support needs of people with ID depend upon the ongoing presence of nurses well prepared to meet the need of this group of people. [ABSTRACT FROM AUTHOR]

Background: Employment rates for Australians with an intellectual disability remain low. Effective evidence-based strategies are required to guide future interventions, to enable people with intellectual disability achieve better employment outcomes. Methods: A literature search of peer-reviewed articles published between 2001 and 2015 was conducted using four electronic databases. Articles were reviewed and sorted according to employment setting and type of support provided. Results: Twenty-two studies were identified. Four studies of open employment examined workplace level strategies and 17 investigated individual level strategies. A single study of supported employment examined individual level change. Results suggested potential strategies that can be utilised to support people with intellectual disability obtain and maintain employment. Conclusions: Existing evidence regarding open employment for people with intellectual disabilities could be enhanced through the conduct of rigorous outcomes-focused studies that attend to specific strategies at both individual and organisation levels. [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]

This article examines trends in the use of accommodation support services for people with intellectual disabilities in Australia. According to the article, observed changes in institutional and community living are mainly driven by "non-institutionalization," that is, people with ongoing support needs remaining in the community, rather than going into institutions. Further, it appears that the institutionalized population is ageing, primarily as a result of younger people with high support needs staying in the community. If the trends continue, they will result in a decreasing number of people with disabilities in institutional accommodation who will also be ageing. The larger group of people in group homes will also be getting older.

To survey the educational experience of Registered Nurses in Australia, at undergraduate, post graduate and continuing professional development levels. It has been previously demonstrated that nurses feel unprepared to care for people with intellectually disability and/or autism spectrum disorder in mainstream clinical settings. Specific undergraduate pre-registration curricula content in this domain has been identified to be low in volume, and in the absence of any studies to determine it, it has been presumed that it has diminished over time. A cross-sectional survey of Australian Registered Nurses using a descriptive survey tool. The level of education undertaken related to intellectual disability and autism spectrum disorder has been consistently low across time and it predates the move from pre-registration hospital based training to the tertiary sector. A relationship was identified between the experience of education and self-reported preparedness, comfort and knowledge to care for people with intellectual disability and/or autism spectrum disorder. Increased educational preparation for nurses to care for people with intellectual disability and/or autism is indicated. [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 indicates the value of active support in achieving good outcomes across a number of quality of life domains for people with intellectual disabilities. However, implementation is not easy, and little research has explored why. We aimed to identify some of the factors that impact on implementation of active support in supported accommodation services. Methods: Data on the quality of active support, staff training and practice leadership were collected through staff questionnaires, observations and manager interviews, for between two and four years across six organisations. Results: Active support improved over time for more able people with intellectual disability, but not for people with higher support needs. There was a weak positive correlation between active support and (1) practice leadership scores, and (2) the percentage of staff reporting active support training. Conclusions: It is important to recognise the influence of practice leadership and staff training on the quality of support and ensure provision for these in funding schemes. [ABSTRACT FROM AUTHOR]

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

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

Background: This article reports research about the experiences of families with an adult child with intellectual disability as they engaged in the NDIS planning processes in Australia. Method: Parents of 19 adults with intellectual disability responded to a number of closed and Likert-type items and provided comments. Responses are reported using frequencies with parental comments used to exemplify their views. Results: The analysis generated insights that included positive perceptions about the availability of National Disability Insurance Scheme (NDIS) information; increased choice and control of participants; some concerns about the implementation of plans; and the lack of inclusion of the adult with intellectual disability in the process. Conclusions: The sample may not be broadly generalisable; however, some aspects of the NDIS planning and implementation process require addressing. [ABSTRACT FROM AUTHOR]

Despite agreement that restrictive intervention (RI) should only be used as a last resort and for as long as required, little is known about long-term RI among individuals with a disability. This study examines long-term RI use. From the Restrictive Intervention Data System dataset from Victoria, Australia, a cohort of 1,414 people reported to be restrained or secluded between July 2008 and June 2010 were identified. The primary outcome was restraint during the follow-up period (July 2013–June 2015). Measures of the secondary outcome, reasons for restraint cessation, were assessed via a self-report survey completed by 54 service providers. At follow up, 74% of the cohort was still subject to RI. Antipsychotic medication use, a diagnosis of autism, and communication difficulties were associated with the use of restrictive interventions at follow up. Long-term RI is prevalent, but can be minimised by positive behaviour support. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disability experience elevated rates of mental ill health. Yet they face barriers in accessing appropriate individualised mental health care. Further research is required to learn about the capability of the mental health workforce to facilitate access and participation in quality mental health care for this group. Methods: Thirty-three Australian intellectual disability mental health experts participated in four focus groups. The research team undertook thematic analysis applying a health care human rights framework known as the 3AQ Framework. Results: The participants identified multiple barriers to the delivery of quality mental health care. These included the lack of clear career pathways, education, clinical skills, clinical guidelines, and negative attitudes held by some mental health professionals. Conclusion: A comprehensive workforce development strategy is required to improve the capability of the mental health workforce to provide an available, accessible, acceptable and quality mental health services to people 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]

Background Informed policy and service provision often relies on a sound statistical picture of a population and its geographical dispersion. Such a picture does not presently exist for Indigenous Australians with intellectual disability (ID) and co-occurring challenging behaviour (CB). Method Population statistics for 18- to 64-year-old Australians were sourced from the 2008 National Aboriginal and Torres Strait Islander Social Survey and 2007–2008 National Health Survey. CB was not directly counted; however, it has been linked to higher severity of intellectual impairment. Results National prevalence of ID for Indigenous adults was 7.6% and 2.5% for non-Indigenous. ID with profound or severe core activity limitation was 2.1% for Indigenous adults and 0.8% for non-Indigenous. Conclusion Population statistics afforded a broad picture of ID and severity of intellectual impairment. Policy and service provision for Indigenous peoples will likely benefit from methodologies that supplement population statistics and provide greater understanding of group dispersion. [ABSTRACT FROM AUTHOR]

The author of this conceptual article was awarded a Churchill Fellowship to travel to the United States, Ireland, and United Kingdom to meet with researchers, practitioners, and community agencies and review how support for people with intellectual disability is provided. A specific focus was upon provision of care for individuals who were either ageing or requiring palliative care. The project took place from June to August 2013 and involved face-to-face interviews and site visits with key academics, government representatives, and community providers in Los Angeles, Chicago, New York, New Jersey, Dublin, Edinburgh, London, Oxford, Cambridge, Bath, Bristol, Birmingham, and Stoke-on-Trent. A priority was placed upon examining how the key features of leading practice models could be implemented within the Australian environment featuring a National Disability Insurance Scheme (NDIS). On the basis of the observations of practice, key points are discussed regarding the potential for improvements to the support of people with intellectual disability within the Australian context of the NDIS. [ABSTRACT FROM AUTHOR]

Background The impact of music therapy on the communicative behaviours of young people with profound intellectual and developmental disability has not yet been established. Method Four adolescents participated in individual music therapy (MT) and toy play sessions with the same therapist in a 6-month period. Sessions were video-recorded and analysed based on The Inventory of Potentially Communicative Acts (Sigafoos, J., Arthur-Kelly, M., & Butterfield, N. (2006). Enhancing everyday communication for children with disabilities. Baltimore, MA: Brookes) to compare the communicative behaviours within each condition. Results Both conditions successfully engaged the young people, with slightly more communicative behaviours observed in MT in response to singing, and more rejecting behaviours in toy play. MT was therefore considered equivalent to toy play in terms of quantity, but distinctive in eliciting more mutually enjoyable interpersonal encounters. Conclusion MT creates engaging and motivating conditions for interactions with others, which suggests the need for greater integration of music therapy into special education classrooms. [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]

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]

Aims: Life expectancy for both sexes in Australia exceeds 80 years, with individuals with intellectual disability also increasingly living into older age. This research aimed to comparatively examine perceptions of staff supporting either older adults or age peers with lifelong intellectual disability. Methods: This project asked 420 medical, health, and support workers about training adequacy, health services access, and trigger points for premature institutionalisation. This paper is based on a subsample of 196 respondents who provided quantitative and qualitative responses. Results: There was considerable variation in confidence in supporting ageing individuals, while only 23.7% of doctors reported their training was adequate to support adults ageing with intellectual disability. A lack of services and poor carer health were identified as triggers for premature institutionalisation. Conclusions: The study revealed key differences in staff perceptions of support provision and training adequacy when comparing ageing individuals with intellectual disability to the general ageing population. [ABSTRACT FROM AUTHOR]

Background: Planning is a key mechanism by which the Australian National Disability Insurance Scheme (NDIS) ensures individuals with disability have choice and control over supports. People with intellectual disability will comprise the largest NDIS participant group and many will need assistance to engage in planning. In order to respond effectively, NDIS planners must understand the decision-making support required by individuals. Method: Focus groups were conducted with 9 adults with intellectual disability living in an NDIS trial site to explore their experiences of NDIS planning. Results: Thematic analysis identified 6 themes related to good planning experiences for people with intellectual disability: preparation, learning from mistakes, personal growth, and having a credible, consistent, and disability-aware planner. Conclusions: Participants who developed a trusting relationship with a planner used planning to increase independence and social participation. Planner skills, particularly communication and sector knowledge, and attributes such as warmth and openness created trust. [ABSTRACT FROM AUTHOR]

Background Doctors have the potential to influence opportunities for normative life experiences in the area of sexuality for individuals with intellectual disability (ID). Method In Study One, 106 doctors completed the Attitudes to Sexuality Questionnaire (Individuals with an Intellectual Disability). In Study Two, 97 doctors completed a modified form of the questionnaire that included additional questions designed to assess their views about sterilisation. Results Attitudes were less positive about parenting than about other aspects of sexuality, and less sexual freedom was seen as desirable for adults with ID. A surprising number of doctors agreed that sterilisation was a desirable practice. Study Two provided data about the conditions under which sterilisation was endorsed. Most doctors reported they had not been approached to perform sterilisations. Only 12% believed medical practitioners receive sufficient training in the area of disability and sexuality. Conclusions The findings have implications for training and professional development for doctors. [ABSTRACT FROM AUTHOR]

In this article the authors discuss data on Australians from a non-English speaking background that have intellectual disabilities. They are critical of a lack of data which has been published on non-English speaking Australians with intellectual disabilities and of the impact that the lack of research has on people with disabilities and on Australian government policy on disabilities.

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]

Background: Despite existing literature identifying the organisational drivers and constraints of employing people with disability, little research has explored how organisations embed disability-inclusive recruitment practices to facilitate ongoing employment opportunities for people with intellectual disability (ID). Method: An embedded case study methodology was used to explore how supervisors and co-workers within a large Australian retail organisation legitimise disability recruitment practices for people with ID and how different operating environments can influence ongoing employment opportunities. Results: Future employment opportunities for people with ID were limited by centralised recruitment process, the availability of suitable roles, and productivity and efficiency demands of the local operating environment, despite the presence of organisational diversity strategies supporting disability employment. Conclusions: The future employability of people with ID is influenced by technological changes to work environments and an increasing focus on efficiency. Future research should address innovative task modifications to enhance employment opportunities for people with ID. [ABSTRACT FROM AUTHOR]

Background: Supported living is perceived as more flexible than group homes for people with intellectual disability. This study identified costs and factors associated with quality of life (QOL) in supported living and compared this with group homes. Method: Thirty-one residents in supported living participated in a survey incorporating measures of service user characteristics and QOL. Participants in supported living were compared to a sample of 397 people in 96 group homes, and QOL outcomes compared for a matched sample of 29 people in supported living and group homes. Results: QOL differed little, supported living was cheaper, and 30-35% of both groups had similar support needs. Being younger, having autism, better health, family support, and participation in structured activities were associated with better outcomes in supported living. Conclusions: Supported living holds potential for group home residents, but greater support is required in domains such as health and interpersonal relationships. [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: General anaesthesia (GA) remains a vital modality to facilitate dental treatment for patients with special needs but there is limited literature to describe the types of patients requiring this form of care and the treatment they receive. Method: A cross-sectional clinical audit was conducted of patients treated under GA at the Day Surgery Unit of the Royal Dental Hospital of Melbourne during August 2015. Results: The majority of patients had an intellectual disability and were referred due to their inability to tolerate conventional dental treatment. These patients demonstrated high levels of treatment need requiring an average of two fillings and six extractions. Conclusions: Although these results demonstrate the value of GA in treating patients with intellectual disabilities, the level of treatment need identified raises concerns about current approaches to oral health for this cohort. Greater efforts are required towards preventive oral care for patients with special needs. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disability (ID) experience poor oral health and are at greater risk of dental decay and periodontal diseases. This impacts on their general health and wellbeing. This review summarises the research literature about oral health status and contributing factors to poor oral health Method: We conducted a literature review using "intellectual disability" and "oral health" as our two core areas of focus. Results: People with ID had poorer oral health, greater numbers of tooth extractions, more caries, fewer fillings, greater gingival inflammation, greater rates of endentulism, and had less preventative dentistry and poorer access to services when compared to the general population. Anxiety during dental procedures was a key issue for females with ID. Conclusions: Further research is needed to identify, pilot and test appropriate and effective interventions that can reduce this preventable health disparity. The design of an ID-specific dental anxiety scale is another priority. [ABSTRACT FROM AUTHOR]

Background: The Human Papillomavirus (HPV) vaccine is offered in Australia to all males and females at 12 to 13 years. In 2015 the national HPV coverage was 77.4% for females and 66.4% for males. There is no Australian coverage data for the subgroup of adolescents with disabilities. Method: We reviewed the HPV vaccine status of all 14 year-old adolescents who attended a developmental medicine clinic in a tertiary hospital in Melbourne during 2014. Motor function and intellectual impairment were also recorded. Results: Of the 72 adolescents in the audit, only 39.5% of males and 44.1% of females were fully immunised against HPV. Those with intellectual impairment had particularly low levels of HPV immunisation (16/47 (34%)). Conclusion: In this study HPV vaccine coverage in adolescents with developmental disabilities was found to be well below national levels. Larger studies of HPV uptake and exploration of the barriers to immunisation in this population are urgently needed. [ABSTRACT FROM AUTHOR]

Background Australian government policy regards people with intellectual disability (ID) as citizens with equal rights, which means that they should have access to the same opportunities as the wider community. Ageing in place is central to aged care policy in Australia for the general population. Method This paper reviews policy to support the provision of similar opportunities to age in place for people with ID, and the reasons for its slow development. Results Due to lifestyle patterns earlier in the life course, many people with ID experience a mid-life disruption to their accommodation, and may live in a group home as they age or may move prematurely to residential aged care. The absence of mechanisms to adjust disability funding as needs change, and the existence of policy that denies residents in group homes access to community-based aged care, forces disability services to "go it alone" to support ageing in place. Conclusion Despite a national priority to improve the interface between the disability and aged care sectors, administrative and funding characteristics continue to obstruct the development of implementation strategies to support ageing in place for people with ID, which remain at the stage of an exploration of the issues. [ABSTRACT FROM AUTHOR]

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

Provides an overview of people with intellectual and developmental disabilities using specialist disability services in Australia. Definitions of service groups covered by the Commonwealth/State Disability Agreement; Consumer profile; Activities of daily and independent living.

Australia is experiencing a rapid increase in both the absolute numbers and proportion of people who are ageing with a lifelong disability. Aged care and disability are the two key social policy sectors that impact most directly on formal services available to this group. Potentially they may be included or excluded from either sector. This paper compares and contrasts Australian policy directions in aged care and disability. Using people with intellectual disability as an exemplar of those who are ageing with a lifelong disability, the paper analyses their location within and the services offered to them by each sector. The paper argues that neither sector adequately addresses the issues raised by the needs of this group and suggests why this is so. Directions for policy and service developments necessary to ensure that the needs of this growing population are met are suggested. These are broadly categorised as; systematically bridging existing gaps with specialist services; supporting inclusion and ensuring older people with lifelong disability are visible within the aged care system; adapting and resourcing the disability sector to facilitate ageing in place; and developing partnerships and joint planning aimed at the removal of cross- and intra-sector obstacles to accessing appropriate services. [ABSTRACT FROM AUTHOR]

National data on the provision of services to Australians with a disability under the Commonwealth/State Disability Agreement (CSDA) have been gathered since 1995 using the Minimum Data Set (MDS). This paper analyses MDS data on residential services for people with intellectual disability between 1995 and 1999. Notable national trends include: (a) a steady growth in the number of recipients of CSDA-funded residential services; (b) a slow but consistent decline in the proportion of people housed in large residentials; (c) a gradual increase in the number of people served in community group homes; and (d) a more rapid growth in outreach/drop-in services such as semi-independent living. Population-adjusted comparisons with residential provision for people with intellectual disability in England and the USA showed that these countries provided between 22 and 71% more places per person than Australia. There appears to be an urgent need in Australia to increase the provision of residential services to people with intellectual disability. [ABSTRACT FROM AUTHOR]

Background People with an intellectual disability (ID) have complex healthcare needs yet experience barriers to participation in primary care. Further research is required to examine if the characteristics of general practitioners (GPs) and their practices influence their delivery of care to people with ID. Methods Data from the Bettering the Evaluation and Care of Health program was used to determine if there are significant differences in the ID-GP and Non ID-GP group. Analysis included characteristic-specific rates, chi-square, and odds ratios. Results This study found that GPs who were Australian medical graduates, practising in rural areas, in accredited practices, and in some states of Australia were significantly more likely to be classified to the ID-GP than the Non ID-GP group. Conclusions This research suggests that certain GP and practice characteristics may present barriers to primary care participation for people with ID and supports the need for a comprehensive national action framework. [ABSTRACT FROM AUTHOR]

There has been a call to increase the quantity and quality of medical education in the area of intellectual disability in order to improve practitioners' provision of care and address the many poorly managed health issues in this population. The first part of this study involved determining the ideal knowledge, skills and attitudes that medical students should have at the end of their undergraduate training. Questionnaires were sent to experts to elucidate their opinions. Common themes were extracted and an ideal curriculum created. The second part of this study involved telephone interviewing of relevant staff at the ten medical schools in Australia to determine whether their teaching covered the knowledge, skills and attitudes outlined by the experts. Although some of the medical schools comprehensively covered ail areas of teaching, half the medical schools displayed significant gaps in their teaching, when compared to the ideal curriculum. These findings provide important information and feedback to medical schools, which may enable them to modify and maximise the quality of teaching provided. [ABSTRACT FROM AUTHOR]