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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. [ABSTRACT FROM AUTHOR]

Background Research shows that many families initially oppose relocation from institutions to community care, but also that a majority change their mind after resettlement. The paper addresses the question of whether this post‐resettlement preference for community services is only short‐term or likely to last. Method Data were gathered at three points in time on people resettling from institutions in Norway: before resettlement (1989/90), shortly after resettlement (1994/95), and about ten years after resettlement (2001). Participants in 1989/90 and 1994/95 were identical ( N = 222, aged 18–67 in 1989). The 2001 sample was different ( N = 176, aged 20–67). Data gathering consisted of interviews with staff and a postal questionnaire to families. Results In 1989/90, only 17% of families preferred community care, while in 1994/95 and 2001 respectively, 73% and 76% of families preferred community care. Conclusions The preference for community care appears not to be short‐term. The question of empowerment/choice associated with the pattern of change from before to after resettlement is briefly discussed. [ABSTRACT FROM AUTHOR]

Background Little attention has been paid to the healthcare workforce in determining healthcare management for people with intellectual disability (ID) in institutions in Taiwan. This paper investigated the profile of the healthcare workforce among institutions caring for people with ID, and examined differences, particularly in relation to nursing staff numbers, between the various types of settings providing care. Method Data were provided by 121 institutions caring for people with ID in Taiwan. Structured questionnaires were completed at these institutions, providing a cross‐sectional survey. Results Nurses were the main health professionals employed in institutions. Even so, more than half the institutions (52.1%) did not have a nurse on their staff. The larger the size of the institution, the more likely it was that nursing staff were employed there. With regard to the relationship between institutional operating structure and the employment of nursing personnel, public institutions were more likely to employ nurses than private institutions or privately operated state‐owned institutions (POSOE). However there was no statistically significant difference among the various operating structures in terms of the ratio of nurses to people with ID. Conclusions The results highlight the importance of examining the regulation of an appropriate ratio of nurses: people with ID in institutions. [ABSTRACT FROM AUTHOR]

Research suggests that women with intellectual and developmental disabilities are at increased risk for adverse pregnancy outcomes. Further, they report unmet perinatal care needs. This qualitative study examined clinician perspectives on barriers to providing perinatal care to women with intellectual and developmental disabilities. We conducted semi-structured interviews and one focus group with US obstetric care clinicians (n = 17). We used a content analysis approach to code data and analyse them for larger themes and relationships. the majority of participants were white, non-Hispanic, and female. Participants reported barriers providing care to pregnant women with intellectual and developmental disabilities across individual (e.g., communication challenges), practice (e.g., identification of disability status), and system levels (e.g., lack of clinician training). clinician training and evidence-based guidelines for perinatal care of women with intellectual and developmental disabilities as well as services and supports during pregnancy are needed. [ABSTRACT FROM AUTHOR]

Presents a response to the comments on articles about cluster housing and freedom of choice. Inappropriateness of dismissing the importance of health status and access to health care; Insensitivity of subjective well-being to life experiences and conditions; Subjectivity of the wellbeing in the measurement of quality of life.

Since the life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing, siblings may take over care/support roles from their parents. To explore how parents and siblings of persons with PIMD view siblings' role regarding future care/support for their family member, we interviewed eight parents and 13 siblings of seven persons with PIMD and analysed the data thematically. While some parents expected that a future care/support role would burden the sibling unfairly, most siblings anticipated such a role and reported no concerns about this future responsibility. Despite a lack of explicit communication, expectations of parents and siblings regarding future responsibilities corresponded. However, some siblings mentioned the lack of explicit communication made them feel unprepared for the future. Explicit family communication may make siblings feel more prepared for the future and decrease the discrepancy between parents' and siblings' views regarding an expected future burden. [ABSTRACT FROM AUTHOR]

In the debate on the social inclusion of people with intellectual disabilities, we find various proposals for dealing with sameness and difference. A more inclusive understanding of difference is needed to ensure that the perspectives of people with intellectual disabilities are taken into account. This study involved in-depth interviews with 25 individuals with intellectual disabilities, 24 people without disabilities, and 15 professionals; and observations in neighbourhood projects. Facilitating convivial encounters is a promising way of engaging with difference and an interesting alternative to "othering," "similarising," or "romanticising difference." Convivial encounters do not promote sameness or difference; instead, they allow groups to jointly develop transient shared identifications. In community projects, sameness and difference can be reinvented so that people can engage with difference in an enriching way. Therefore, convivial encounters, especially when organised, can be seen as a new framing of the ideal of social inclusion. [ABSTRACT FROM AUTHOR]

The author reflects on the need for a specialist service within the generic hospital setting in Great Britain. He states that the topic is a critical issue regarding effective models of healthcare delivery for intellectual disability (ID) patients. He mentions that the scope of healthcare systems is not captured if it is limited on the small proportion of the population of people with ID. He adds that the establishment of a generic healthcare environment is considered ethical and philosophical.

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 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]

BackgroundCollaborative virtual environments (CVEs) have the potential to support sociocommunicative interactions for people with autism spectrum disorder (ASD), but little is known about the sense of presence participants feel in CVEs or how CVEs can be used to assess skills. MethodTen children with ASD and 10 typically developing (TD) children (aged 12–16 years) judged greeting behaviours of a human avatar and static facial expressions in a virtual gallery. ResultsThere were no differences in presence reported by the two groups. The ASD group was less sensitive to a negative greeting from the human avatar than the TD group, and impaired in recognising static facial expressions. ConclusionsSelf-reported measures of presence are valuable for informing which kinds of tasks, and technology may provide more authentic contexts in which to identify and support social competence in participants with ASD. [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 Given the paucity of relevant data, this study estimates the cost of intellectual disability (ID) to families and the government in Australia. Method Family costs were collected via the Client Service Receipt Inventory, recording information relating to service use and personal expense as a consequence of ID. Government expenditure on the provision of support and services was estimated using top-down costing. Results A total of 109 parents participated. The cost of ID in Australia is high, especially for families. Total economic costs of ID are close to $$14,720 billion annually. Opportunity cost of lost time provided 85% of family expense. A comparison of family expense and social welfare benefits received suggests that families suffer considerable loss. This may impact on families' physical and emotional wellbeing. Conclusions Monitoring of changes in expenditure is required. Policies should ensure that money devoted to ID is allocated in a rational, equitable, and cost-effective manner. [ABSTRACT FROM AUTHOR]

In this article the authors discuss the need for new models for delivery of therapy interventions for people with disabilities in rural and remote areas of Australia in 2012. They are critical of existing therapy interventions and are supportive of recruiting and training additional workforce members who are capable of delivering therapy interventions and of utilizing technology to address the needs of patients in rural and remote areas of Australia.

Background Little is known about surrogate healthcare decision-making for individuals with intellectual disability (ID). This study examined healthcare decision-making by residential-agency directors to learn their process and the extent to which the individual is included. Method Content analysis of qualitative data from a mailed survey of residential-agency directors in a large US northeastern state. Results Narrative comments of 102 directors (65% of respondents) are reported. Three themes emerged: (a) Identifying someone else's “best interest” is challenging; (b) Perceptions of the healthcare community, especially related to quality of life, can influence care provided; and (c) Surrogate decision-making is a team effort. Conclusions With knowledge of how decisions are made, the healthcare community can better interact with the complex array of service agencies and persons who determine care for this vulnerable population. [ABSTRACT FROM AUTHOR]

Background Caregivers in this qualitative study reported the multidimensional implications of having a child with autism on their family's lives and overall functioning. Method The Effects of the Situation Questionnaire (Yatchmenoff, Koren, Friesen, Gordon, & Kinney, 1998) was used to gather qualitative data from 80 caregivers. Colaizzi's (1978) phenomenological data analysis method was used to analyse the caregivers' written narratives. Biopsychosocial-spiritual, systemic, and ecological theoretical lenses were used to conceptualise the recorded experiences. Results Seven thematic content areas emerged from the caregivers' data. They include: psychological implications, familial implications, social implications, services, spiritual benefits, economic challenges, and focus on the future of having a child diagnosed with autism. Conclusions The results of this study offer valuable insight into how helping professionals may attend to the biological, psychological, social, and spiritual dimensions of those caring for an individual with autism. [ABSTRACT FROM AUTHOR]

The authors comment on the need for a specialist service for adult patient suffering from intellectual disability (ID) and physical health problems within the generic hospital setting in Great Britain. They point on the issue that ID is not considered a health problem but the biophysical impact of cognitive impairment contributes to the patients' vulnerability. They state that the role of caregivers and healthcare professionals are important.

Background Identifying the factors associated with greater increases in resident engagement has the potential to enhance the effectiveness of active support (AS). Method Observational data from Stancliffe, Harman, Toogood, and McVilly's (2007) study of AS were analysed to evaluate amount of staff help, effectiveness of staff help, and staff use of praise. Results Lag analyses showed that antecedent staff help was consistently followed by resident engagement at pre-test. This strong association did not increase significantly at post-test. Resident engagement was more likely to follow staff help than the other way around. There was an increase from pre-test to post-test in help and praise by staff. The higher absolute amount of praise was largely the result of the increase in staff help. Conclusions The amount of staff help, its effectiveness, and use of praise by staff may each be important in increasing engagement. These factors should continue to be the focus of research attention and applied efforts to help ensure active support is consistently effective. [ABSTRACT FROM AUTHOR]

Background The aim of this study was to explore the views of hospital and disability service staff on the roles and needs of family carers of adults with cerebral palsy (CP) and complex communication needs (CCN) in hospital. Method We conducted a focus group with six hospital and disability service staff, analysed the content themes of the group discussion, and verified the analysis with participants. Results Participants highlighted the family carers' expertise and roles in emotional and communication support, advocacy, and providing information. They acknowledged that there is a gap between the ideal of hospital staff being able to provide all necessary care to the patient with CP, and the reality of hospital staff relying upon family carers for their expertise and provision of patient care. Conclusions Hospital and disability staff do not expect family carers to replace the nurse in caring for the patient with CP and CCN in hospital. Nevertheless, family carers provide valuable support in hospital. This includes support with communication, advocacy, protection, information exchange, direct care, and emotional support. Family carers with a high level of expertise in providing care may need support in adapting to the culture of care on the ward and in transferring their roles and expertise in direct care to hospital staff. In addition, they need emotional and practical support through the stressful experience of having a family member hospitalised. [ABSTRACT FROM AUTHOR]

While there is extensive evidence on the overall benefits of deinstitutionalisation, the move from institutional care to providing accommodation and support in small to medium sized dispersed housing schemes has not gone uncontested. Recently, a number of commentators have argued for the development of cluster housing on the basis that it may provide a "connected" community of people with intellectual disabilities. In the present study, comparisons were made, controlling for a range of participant characteristics, on a range of input, process and outcome variables between 169 adults with intellectual disabilities living in cluster housing and 741 adults with intellectual disabilities living in dispersed housing. Participants supported in cluster housing were more likely to live in larger settings, be supported by fewer staff, be exposed to greater changes/inconsistencies in living arrangements (their home also being used for short-term care for others and greater use of casual/bank staff), be exposed to more restrictive management practices (seclusion, sedation, physical restraint, polypharmacy), lead more sedentary lives, be underweight, and participate in fewer and a more restricted range of leisure, social and friendship activities. There were few potential benefits associated with living in cluster housing. It is concluded on the basis of the available evidence that cluster housing schemes offer a poorer quality of care and quality of life than dispersed housing schemes. [ABSTRACT FROM AUTHOR]

The aim of this study was to investigate general practitioners’ (GPs) beliefs about the importance of addressing nine health care issues for people with intellectual disabilities, and their roles in providing this care. GPs’ current level and intended future level of addressing these health care issues were also determined. Questionnaires were mailed to 912 GPs Australia wide, with a 58% response rate. The vast majority of respondents agreed that the nine issues are important health care issues for people with an intellectual disability. Most respondents also agreed that it is the GPs’ role to facilitate or ensure these health issues are addressed. Although having broad attitudes about their roles, GPs indicated significant deficiencies in their current level of health care provision for many of the health issues. However, they also indicated their intentions to increase the frequency of addressing these health issues in the future as a result of issues raised in previous questions on the questionnaire. This response to simply increasing GPs’awareness of their practice behaviour has a variety of important implications for training and ongoing education. [ABSTRACT FROM AUTHOR]