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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: 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]

Background: This paper presents the findings from a qualitative research project that explored what ten people with intellectual disabilities who receive care and support in a residential care facility deem valuable for living a good life and what the opportunity to manage resources for care and support themselves means to them. Method: With the use of photovoice, the 10 participants documented their care and support, and by extension, their own lives. We describe how the project was carried out and the facilitating and obstructing factors we encountered. Results: The collected images and related personal stories teach us about the central importance of significant others to the lives of the participants and their vital role as "necessary others" who nurture a multitude of possibilities. Conclusions: The increasing policy focus on independence and self-sufficiency is opposed to the vital role of relationships in the participants' view of a good life. [ABSTRACT FROM AUTHOR]

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: This descriptive single-case study reports upon a four-decade history of health care and support provided to one male with life-long intellectual disability and significant comorbidities. Methods: All available paper and electronic documentation from the past 40 years was reviewed, with relevant health and medication information collated and summarised. Results: The collated information notes radical movement in mental health diagnoses and significant emerging physical health issues. There are disparate and sometimes contradictory mental and physical health diagnoses from age 2 years and significant changes in treatment. Conclusions: This case outlines a number of important issues for medical and health care practitioners to consider when supporting individuals with intellectual disability. Clear differentiation between an existing intellectual disability, autism, and emerging mental health concerns has remained problematic over many decades. The lack of effective pain management, when contrasted against comprehensive medication regimes for health issues, is particularly concerning. [ABSTRACT FROM AUTHOR]

Background: Traditional treatment for the behavioural symptoms in autism spectrum disorder (ASD) remains unsatisfactory. There is an urgent need for new, biologically relevant therapies that target both the core and comorbid symptoms that children may experience. This article builds on research previously published by the authors. Method: We report a mixed-methods analysis from a 24-week double-blind randomised controlled trial of adjunctive N-acetylcysteine (NAC) for the treatment of behavioural symptoms in ASD. Ninety-eight children between the ages of 3 and 9 years, diagnosed with ASD, participated in the study. Outcome measures included parents' assessment reports (obtained before, during, and after the trial), clinicians' observations, and the researchers' detailed case notes. Thematic analysis of textual data (n = 85) was carried out, followed by an evaluation of differences in the frequency with which changes in behaviour were qualitatively reported. Results: Compared with placebo, the parents of the group that received NAC reported improved calmness, decreased aggression and agitation, and greater improvements in verbal communication. Conclusions: These results support the usefulness of NAC for treating potentially disruptive behaviour (e.g., aggression and hyperactivity) in children with ASD and provide a novel finding: potentially improved verbal communication following NAC treatment. This paper supports the utility of a mixed-methods analysis for detecting latent signals in clinical trials. [ABSTRACT FROM AUTHOR]

Background There is limited research investigating the lived experiences of parents raising children with fetal alcohol spectrum disorder (FASD). The aim of this paper is to use qualitative analysis to identify how parents have adapted to the experience of raising their child with FASD. Method Eighty-four parents and caregivers of children with FASD in Ontario, Canada, participated in in-depth, semistructured interviews employing a basic interpretive approach. Results Parents of children with FASD report a number of strategies, supports, and transformational outcomes. Using interpretative phenomenological analysis, 5 themes were identified: understanding FASD and advocating on their child's behalf, day-to-day adaptation, transformational outcomes, as well as the importance of informal and formal supports. Conclusions Understanding what families do in order to facilitate adaptation is important when assisting families who may not be adapting as successfully. Continued research looking at the family experience of raising a child with a developmental disability, such as FASD, is necessary. [ABSTRACT FROM AUTHOR]

BackgroundIn this paper we present a systematic review of the evidence on the use of social media by people with intellectual disability. MethodTen primary studies published in the English language between January 2000 and June 2014 were identified from electronic database searches (CINAHL, PsychInfo, PubMed, Web of Knowledge, and Scopus), correspondence with experts, and citation tracking. ResultsNine themes were identified through thematic analysis of the texts: “safety and safeguarding,” “social identity,” “level of usage,” “support,” “relationships,” “happiness and enjoyment,” “communication and literacy skills,” “cyber-language and cyber-etiquette,” and “accessibility/design”. ConclusionExamination of these themes revealed that some people with intellectual disability are having positive experiences using social media in terms of friendships, development of social identity and self-esteem, and enjoyment. However, barriers that stop people with intellectual disability from successfully accessing social media were identified as being safeguarding concerns, difficulties caused by literacy and communication skills, cyber-language, cyber-etiquette, and accessibility (including lack of appropriate equipment). [ABSTRACT FROM PUBLISHER]

Background Positive behaviour support (PBS) emphasises multi-component interventions by natural intervention agents to help people overcome challenging behaviours. This paper investigates which components are most effective and which factors might mediate effectiveness. Method Sixty-one staff working with individuals with intellectual disability and challenging behaviours completed longitudinal competency-based training in PBS. Each staff participant conducted a functional assessment and developed and implemented a PBS plan for one prioritised individual. A total of 1,272 interventions were available for analysis. Measures of challenging behaviour were taken at baseline, after 6 months, and at an average of 26 months follow-up. Results There was a significant reduction in the frequency, management difficulty, and episodic severity of challenging behaviour over the duration of the study. Escape was identified by staff as the most common function, accounting for 77% of challenging behaviours. The most commonly implemented components of intervention were setting event changes and quality-of-life-based interventions. Conclusion Only treatment acceptability was found to be related to decreases in behavioural frequency. No single intervention component was found to have a greater association with reductions in challenging behaviour. [ABSTRACT FROM AUTHOR]

In many developed cultures there is an assumption that IQ is intelligence. However, emerging theories of multiple intelligences, of emotional intelligence, as well as the application of IQ testing to other cultural groups, and to people with disability, raises many questions as to what IQ actually measures. Despite recent research that shows IQ testing produces a floor effect when applied to people with lower IQ, as well as research that shows the Flynn effect also applies to people with lower IQ, in practice IQ scores below a certain cut-off are still being used to determine and classify a person's intellectual disability. However, a new paradigm is emerging, almost returning to the original intent of Binet, where measurement is made of the supports the person needs. In this paper, we argue that if one extends the notions of this supports paradigm that diagnosis of intellectual or physical disability could potentially be replaced by diagnosis of additional intellectual support needs, or additional physical support needs. [ABSTRACT FROM AUTHOR]