Search

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]

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: 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]

This study synthesises current literature concerning the barriers to the National Disability Insurance Scheme (NDIS) faced by people with intellectual disability and/or complex support needs who are involved with the criminal justice system, or at risk of (re)involvement. Through targeted searches of key databases, 41 publications were identified from the scholarly and grey literature. Collected literature raises three main barriers to the NDIS. First, there are (mis)identification and diagnostic tensions hindering eligibility. Second, there are problems with the planning process, including the impracticality of "planning for" chaotic situations. Third, there are market and workforce deficits. Research into the NDIS experiences of justice-involved people with intellectual disability and/or complex support needs is nascent and developing alongside an evolving NDIS landscape. Future research should focus on the effects of forthcoming developments designed to reduce the barriers facing these populations, including the Complex Support Needs Pathway, and workforce capabilities and market strategies. [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]

The article focuses on the concept of "a life well led" in the context of individuals with severe intellectual disabilities, exemplified by the life of Greg Germany. Topics include Greg's contributions to disability support provision, his impact on service models, and the importance of individuals with disabilities and their families in guiding feedback for effective support.

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]

This study reports the findings from a Dutch study, exploring care workers' challenges and approaches in guiding young people with intellectual disabilities in their online lives. Using an inductive research design 33 semi-structured interviews were conducted with care workers. Care workers report challenges that revolve around three themes: (1) the perceived intangibility of the online lives of clients and (2) Risk perception: feeling stuck between control and freedom. (3) Differences in guiding approach between care workers. Based on these results a conceptual model is presented that aims to show the connection between these challenges and guiding approaches. Perceptional processes may influence care workers' guiding approaches. This raises important questions about the implications of these guiding approaches on the level of support clients with intellectual disabilities receive and the effectuation of their rights and liberties under the 2006 United Nations (UN) Convention on the Rights of Persons with Disabilities. [ABSTRACT FROM AUTHOR]

The author discusses the intellectual impairment of Down syndrome as he provides a critique of the chief claims made by competing frameworks of the social model of disability and poststructuralism to establish whether they add anything substantive to the ongoing debate over the role of third parties in the lives of people with intellectual disability. He points out that the debate surrounding the merits of normalisation/social role valorisation (SRV) is in many respects a pseudo debate.

Little is known about networks for positive behaviour support (PBS) in disability services. This study explores a PBS network to identify influential persons in its promotion and communication. Quantitative sociometric methods were used to identify persons who occupy positions of either boundary spanning (those that link people and groups) and/or opinion leadership (those that are sought for advice). Nineteen persons were identified. Boundary spanners met all criteria for the position while opinion leaders did not. This is the first published study of a PBS network in disability services and provides insights into persons involved in its systemic promotion. Boundary spanners are effectively bridging the PBS network, yet persons seeking information about PBS are doing so from opinion leaders that do not display a requisite characteristic for this role. These results have implications for the wider utility of PBS within disability service systems. [ABSTRACT FROM AUTHOR]

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. 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. 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. Findings can inform the future design and evaluation of programs to support the development of informal support network for people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Supporting participation in decision making is complex, dynamic and multifactorial. The aim of this study was to understand more about the difficulties parents of adults with intellectual disabilities experienced in providing decision support and their strategies for resolving them. Participants were 23 parents who regularly provided decision support for their adult with intellectual disabilities. Most of the adults (19) lived at home. Parents participated in semi-structured interviews at least three times during the study. We applied a social-constructionist theoretical perspective and a template approach for analysis. Findings fell into three core categories, making the right decision, factors that made decision support difficult, and strategies to manage uncertainty, which included controlling, influencing, expanding the adult's horizons and enabling risk. The knowledge gained will help in building the capacity of parents to provide decision support that better understands and respects the will and preferences of the person they support. [ABSTRACT FROM AUTHOR]

Background Supported decision-making and personal budgets for services are the new paradigms. Method Supported decision-making proposals from the Australian State of Victoria are analysed against international trends to determine the viability of laws reflecting new international norms of the United Nations Convention on the Rights of Persons with Disabilities 2006 (CRPD). Results/Conclusions The article concludes that it is desirable to pursue supported decision-making and allied legal reforms, but the contribution of the law is small and the new supported decision-making paradigms have similarities to old paternalist guardianship, as well as possible unintended consequences. It is suggested that realising the equality, support, protection, and socioeconomic service aspirations of the CRPD raise important practical challenges for governments, for service providers, for families, and-centrally-for people with intellectual disability (ID).This article examines the limited contribution law can make to this enterprise. [ABSTRACT FROM AUTHOR]

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]

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]

This study investigated transition, or school leaving, as experienced by young adults living in Aotearoa New Zealand who had significant intellectual and developmental disabilities. To investigate these typically unheard perspectives, qualitative methods were adapted to individual communication preferences. Personal and contextual intersections were critically analysed using the theoretical framework of the capability approach. The capability approach emphasises individuality and one's freedom of choice to construct a good life of dignity. Timetables - schedules of daily activities - were examined using artefactual analysis to make sense of and explain important insights about transition through this pivotal support anchor. Yet, the utility of these artefacts, found to communicate personal capabilities, was underrecognised by those supporting transitions from school. This article reports fresh insights into supporting this critical life stage increasing the potential for a transition with dignity. [ABSTRACT FROM AUTHOR]

An introduction is presented to a special series of articles on the topic of efficacy in positive behaviour support (PBS), including an article about applied behaviour analysis, an article about PBS trainer training programs, and an article presenting case studies of patient outcomes in PBS therapy.

Background: Canada was the first country to develop legal mechanisms that allow for supported decision making, and little research has explored how decision making is supported in this context. This research aimed to understand how seven people with intellectual disabilities, living in two Canadian provinces, were supported with their decision making. Method: The research used constructivist grounded theory methodology, interviewing and observing the decision making of seven people with mild to severe intellectual disabilities and 25 decision supporters. Results: A common process of decision-making support was discovered, involving dynamic interaction between the person's will and preferences and supporters' responses. This interaction was influenced by five factors: the experiences and attributes the person and their supporter brought to the process; the quality of their relationship; the decision-making environment and the nature and consequences of the decision. Conclusion: The highly individualised and contextually dependent nature of decision-making support has implications for supported decision-making practice. [ABSTRACT FROM AUTHOR]

Background: People with Intellectual Disability (ID) in Sweden should be enabled to live like others. This life like others is realised in group homes that have little in common with the typical home. Method: A reading of Appiah's As if is used to discuss how people with ID are supported in Sweden. Current national data are presented within the framework of idealisation, the use of (useful) untruths to navigate a complex context. Results: Small group homes should allow people with ID to communicate their preferences and exert real influence over how support is provided. Instead, times of budget austerity require the efficient use of resources in ever larger settings, where normalisation of deviance is prevalent. Conclusions: Although the stated aim is that people with ID live like others, the idealisation is rather that they live as if they live like others. This is generally not discussed, possibly due to de-differentiation. [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: This study compared Bedouin mothers of adolescents with developmental disabilities (DD) and Bedouin mothers of typically developing adolescents using measures of social support, depression, and somatisation. It further examined whether social support and raising a child with DD would predict maternal depression and somatisation beyond demographic variables. Methods: Ninety-five Bedouin mothers of adolescents with and without a DD filled out self-report questionnaires. Results: Bedouin mothers raising a child with DD reported more depression and somatisation symptoms and less social support than their counterparts. Social support was negatively correlated with depression among Bedouin mothers of typical children, but not among mothers raising a child with DD. Furthermore, raising a child with DD significantly contributed to the prediction of depression and somatisation among Bedouin mothers. Conclusions: The findings suggest that Bedouin mothers raising a child with DD are at risk of experiencing mental-health issues, specifically depression and somatisation symptoms. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

An introduction is presented in which the editor discusses articles in the issue on topics including intervention to support the inclusion of elementary pupils with ID promoted both attitude and behavior change in TD peers and the challenging behavior practice.

Background: A number of studies of the roles and responsibilities of teaching assistants have been conducted in Australian jurisdictions, but much of this research has been small-scale or geographically localised. Method: The present study was the largest survey conducted in Australia to date and involved a survey of 361 teaching assistants in New South Wales public schools, addressing professional tasks performed, and perceived training needs. Results: Consistent with previous research, there was a strong focus on direct student support, often in a one-to-one context. Generally, the assistants in this research did not perceive a great need for training in most areas relevant to their professional duties. Conclusions: Current patterns of use of teaching assistants may be problematic. It is recommended that teaching assistants provide general classroom support and deliver specific programs under teacher direction, rather than ad hoc individual assistance, and not be required to plan instruction. [ABSTRACT FROM AUTHOR]

Background: Supporting people with intellectual disability to make decisions is an important issue for policy implementation yet there is little evidence about the practice of providing support. Method: This study aimed to understand the experiences of family members and disability support workers in providing support to adults with intellectual disability in Victoria, Australia. Twenty-three people drawn from these two groups participated in individual or focus group interviews. Results: Three major themes emerged from inductive thematic analysis: their ideas about decision support, approaches to support, and challenges they faced. Overall these revolved around juggling rights, practicalities, and risks Conclusions: This study identified some of the challenges and practical strategies for providing decision support that can be used to inform practice and capacity building resources for supporters. [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]

Background: Research suggests that parents who perceive themselves as more effective and satisfied report less stress when raising a child with autism. We examined associations between parenting sense of competence, reported family support needs, and parental future expectations, with a sample of mothers of children with autism. Method: Mothers completed a cross-sectional online survey, which included a measure of expectations: Hopes for the Future, the Parenting Sense of Competence Scale and the Family Needs Survey. Results: Analysis revealed that mothers with lower support needs had greater parenting satisfaction; and mothers with more positive expectations perceived themselves to be more effective. Ethnicity, expectations, and lower levels of perceived family support needs, were predictors of greater satisfaction. Higher positive expectations predicted a greater sense of efficacy. Conclusions: The findings highlight the need for further research into the factors that underlie parental efficacy and expectations when parenting a child with autism. [ABSTRACT FROM AUTHOR]

Background Research shows that up to 43% of disability support workers (DSWs) report poor psychosocial work outcomes (e.g., stress, job burnout, low job satisfaction). This study examined whether the job demand-control-(support) model offers a valid explanation of DSW burnout and work engagement. Method 325 DSWs completed online measures of burnout, work engagement, workload, job control, and supervisor or colleague support. Results Significant three-way interactions between workload, control and colleague support were found for emotional exhaustion and personal accomplishment (burnout), and vigour (work engagement). High workload, low job control and low colleague support was related to higher burnout and lower work engagement, and high colleague support or job control reduced the impact of workload on these outcomes. Conclusions Given the promising findings in relation to the job demand-control-(support) model, organisations looking to enhance DSW wellbeing in the workplace should address issues around job control, workload and support in combination as opposed to separately. [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: The aim of this review was to explore the legal, ethical, and rights issues surrounding use of the Australian My Health Record (MyHR) by people with communication disability. Method: We undertook a narrative review of the legislation and research affecting the implementation of MyHR in populations with communication disability. Results: Use of MyHR by people with communication disability will require careful consideration in relation to (a) capacity and consent; (b) roles of nominated or authorised representatives in the system; and (c) the way decisions are made in relation to the use of MyHR, including supported decision-making for people with intellectual disability. Conclusion: Legal and ethical issues in the use of MyHR by people with communication disability centre on legal rights and equal access. These issues must be addressed if people with communication disability are to have full access to their legal rights and access in exercising personal choice and control in the use of MyHR. [ABSTRACT FROM AUTHOR]

Background: The aim of this study was to explore agreements in the way parents of a person with profound intellectual and multiple disabilities and professionals perceive the support in terms of its family-centredness in order to gain a better understanding of their collaboration. Method: An adapted version of the Dutch Measure of Processes of Care was completed by 109 parents, and an adapted version of the Dutch Measure of Processes of Care for service providers was completed by 144 professionals. Agreements between parents and professionals were analysed using multilevel analysis. Results: In general, the parents and the professionals disagreed on occurrence and importance of both the Enabling and Partnership scale and the Respectful and Supportive Care scale. Conclusion: In order to deliver family-centred support, service providers should be aware that there are disagreements between the parents’ perception of what is important in the support provided and the perception of the professional. [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 Behaviour support plans (BSPs) are at the core of positive behavioural support for challenging behaviour, but nonadherence to BSPs is common. Generally, nonfluent component knowledge prevents learners achieving fluent application and retention of information, and we hypothesised that this may apply to staff learning BSPs.Method We compared the effectiveness of fluency training (FT) and precision teaching on staff learning of BSPs with staff receiving consultation as usual, comprising standard support for learning BSPs. All staff completed pre- and postintervention tests measuring frequency of component skill recall and application of component knowledge (composite skills).Results The FT group made and maintained greater gains in component skill recall and achieved higher composite test scores, suggesting greater application of component skills. These effects were associated with moderate effect sizes.Conclusions This study offers initial support for the application of FT and precision teaching for staff learning BSP content. [ABSTRACT FROM AUTHOR]

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

Background Quality behaviour support plans (BSPs) are critical for achieving positive outcomes for people with intellectual disability who exhibit challenging behaviour. This study measured the quality of BSPs for technical accuracy and appropriate readability.Method Ten disability support organisations provided 139 BSPs for evaluation using the Behavior Support Plan Quality Evaluation (BSP-QE II; to assess technical accuracy) and Flesch readability scores (to assess readability).Results The mean BSP-QE II score (M = 6.53) classified the BSPs analysed as “weak.” Of interest, the elements of the BSPs that were subject to specific statutory regulation displayed greater quality. The readability scores indicated that plans were written using language that may not be understandable to typical direct support staff.Conclusions Poor quality BSPs, or those too complex to be readily understood, may not be implemented fully. Statutory regulation positively influences BSP quality; however, a more detailed focus on training and quality assurance is indicated. [ABSTRACT FROM AUTHOR]

BackgroundThis systematic review aimed to identify the factors related to psychosocial outcomes for adults with high-functioning autism spectrum disorder (HFASD). A further aim was to appraise the research methodology and provide recommendations for future research. MethodSystematic review methodology was used to comprehensively search for peer-reviewed articles, assess methodological rigor, and summarise the results. Twenty-seven studies published between 1989 and December 2015 met inclusion criteria and included 1,398 individuals (Mage = 28.54 years) with HFASD (IQ ≥ 70). ResultsFactors most consistently found to be related to poor psychological, social, and adaptive outcomes included greater symptom severity, lower childhood IQ, impaired nonverbal learning, cognitive shifting deficits, negative thinking styles, and perceptions of low social support. ConclusionsOverall, key risk factors for poor psychosocial outcomes of adults with HFASD were identified. However, further prospective longitudinal research with large samples is needed to examine the complex and potentially bidirectional relationships among these factors. [ABSTRACT FROM PUBLISHER]

Background Typically developing (TD) siblings of individuals with autism spectrum disorder (ASD) often fulfil caregiving roles as children or adults (i.e., parentification, which can be either parent-focused or sibling-focused). Method This study examines how parentification interacts with social support when predicting distress and sibling relationship attitudes in 60 TD adult siblings of individuals with ASD. Results Perceived social support served as a moderator. Specifically, TD adult siblings who experienced high parent-focused parentification during childhood and low current social support were most likely to report high distress. TD siblings who reported low sibling-focused parentification during childhood and low current social support were most likely to report less positive attitudes about their relationships with their siblings with ASD. Conclusions Current findings suggest that perceived social support may serve as a potential point of intervention for reducing distress and improving sibling relationship attitudes among adult TD siblings of those with ASD. [ABSTRACT FROM AUTHOR]

BackgroundThis phenomenological study explores the perceptions, hopes, and dreams of relationships and parenting of women with a genetic intellectual disability. MethodFive women with both 22q11.2 deletion syndrome (22q11DS) and intellectual disability took part in semistructured interviews. Their subjective interpretations were analysed using interpretative phenomenological analysis. ResultsFour main themes emerged: (a) challenges and acceptance of having 22q11DS, (b) desire for social acceptance and normality, (c) welcoming of emotional and practical support, and (d) individuation. The themes describe the discordance between the challenges and acceptance of having a genetic disorder, the need to be “normal,” the importance and appreciation of social support, and the women’s aspirations for independence. ConclusionsYoung women with 22q11DS approach their adulthood with a sense of optimism and personal competence yet recognise their unique challenges. Parental support is valued despite the need for independence. The findings provide insight into the lived experience of women with 22q11DS. [ABSTRACT FROM PUBLISHER]

BackgroundPeople with intellectual disability have a limited understanding of dying and death. The role of parents in developing the understanding of their son or daughter with intellectual disability about these concepts is unclear. This study aimed to explore parental experiences when talking with their son or daughter with intellectual disability about dying and death. MethodFour participants were interviewed about how they discussed dying and death with their son or daughter with intellectual disability. Thematic analysis was used to interpret the findings. ResultsParents did more than talk to their son or daughter about death; they involved them in dying and death experiences. Parents’ motivations influenced the way they included their son or daughter in these experiences. ConclusionsThe parents played an important role in providing learning experiences for their son or daughter with intellectual disability about dying and death. [ABSTRACT FROM PUBLISHER]

BackgroundEnvironments are important to children’s participation, but little is known about which environmental factors restrict their participation, particularly in children with moderate to severe developmental disability. MethodParents of 64 children attending special schools completed the Environmental Restriction Questionnaire (ERQ). Two researchers classified the item contents of the ERQ using theInternational Classification of Functioning, Disability and Health – Children and Youth(ICF-CY) to provide uniform interpretation. ResultsAt home, the environmental restrictions related to Products and technology within the ICF-CY. The environmental restrictions in the community involved 3 areas: Products and technology, Support and relationships, and Services, systems, and policies. The environmental restrictions on children’s educational participation originated from Support and relationships and Attitudes of the parents. ConclusionsThe findings offer insights into the critical environmental restrictions on the participation of children with developmental disability. Resources and support that target modifiable environmental factors may help to promote children’s participation. [ABSTRACT FROM PUBLISHER]

Background There has been substantial increase in the number of people with mild intellectual disability (MID) or borderline intellectual functioning referred to long-term care. Insight into the specific characteristics and needs of these people is essential to provide appropriate support and gain insight into the increase in referrals. Method This retrospective descriptive study was based on a structured case analysis of a sample of 250 participants. Results Mental health problems and exposure to social and familial disadvantages were common. Care provided before referral tended to be suboptimal. Individuals with borderline intellectual functioning had more personal and contextual problems than people with MID. Conclusion People with MID or borderline intellectual functioning are confronted with a wide range of complex problems; even after years of professional support they may still need intensive support. Differences in the characteristics and contexts between individuals with MID or borderline intellectual functioning require further exploration. [ABSTRACT FROM AUTHOR]

Background Research in the field of family quality of life (FQOL) emphasises the importance of attainable support resources for families of children with developmental disability (DD). In this study we explored FQOL by examining some of its specific domains and expanded upon them. The 2 main aims were to examine differences in FQOL according to the degree of religiosity among Israeli Jewish families and to investigate the contribution of family, social, and governmental service support, as well as religion and spirituality to FQOL. Method Parents from 170 Jewish families of children with DD aged 3 to 14 years completed a self-administered questionnaire, which included the Family Quality of Life Survey – 2006 and instruments measuring family support, social support, support from governmental services, and support through religion and spirituality. Results Religious families reported a higher FQOL in comparison with secular families. No differences were found, however, between religious and secular families regarding familial, social, and service supports. Familial support and religious and spiritual support were found to contribute to the FQOL of religious families, whereas social support contributed to the FQOL of secular families. Conclusion These findings help clarify which supporting factors predict the FQOL for families living in Israel. Suitable support resources should be offered to families raising children with DD in order to enhance their FQOL. [ABSTRACT FROM AUTHOR]

Background This study describes the sociodemographic, clinical, and functional characteristics of a representative sample of service users in Italy. The supports provided by formal agencies, natural networks, and actual levels of quality of life (QOL) were assessed. Methods The participants were 1,285 individuals with intellectual and developmental disability served by 23 different services. The influence of availability of support strategies, environmental factors, client characteristics, personal desires and goals, and support needs on current QOL status was investigated using multiple regression. Results QOL outcomes were significantly explained by support needs, client characteristics, personal goals and desires, and marginally by the presence of support strategies and environmental factors. Further, only a minor effect was found from support activities for general QOL outcomes. Conclusions The results confirmed that the personal outcomes could be predicted providing support activities aligned to the specific personal needs and goals, confirming the importance of a person-centred planning process. [ABSTRACT FROM AUTHOR]

BackgroundYoung people with intellectual and developmental disability (IDD) get information, education, and support about social and sexual relationships from different sources. Staff are often involved in providing this education and support. We explored if and how this support is offered to young people transitioning to adulthood. MethodsFocus groups were conducted with 17 staff from 3 transition services to illicit information about their experiences providing this education and support. FindingsA key theme was that staff are “reluctant counsellors.” Although staff provided social and sexual education, they reported being underprepared and relied primarily on their own values as guidance. They did this in full recognition that transition services filled a social gap for participants, blurring the lines between education and social support. ConclusionFurther research is needed to inform sexuality and relationship policy and practice during transition to adulthood, as this is a key learning and developmental time for young adults with IDD. [ABSTRACT FROM PUBLISHER]

The authors talk about providing support planning to people with complex support needs (CSN) and intellectual disability in Australia falling under the National Disability Insurance Scheme (NDIS). Topics discussed include denial of opportunity for expressing aspirations leading to no participation in support planning, flexibility in support planning to provide ease of moving to independent planning and need for communication skills to build empathy with people with CSN.