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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: 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]

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]

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]

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: Dedifferentiation refers to the trend of positioning people with intellectual disabilities together with other disabled individuals for political purposes, to act as a counter to differentiated approaches. This article explores the influence of dedifferentiation in professional support settings through the lived experiences of people with intellectual disabilities and their staff. Methods: Ethnographic research, including participant observation and interviews, conducted with an intellectual disability social care provider and an independent community café, both based in an area of England. Results: Tensions exist between dedifferentiation aims and the lived experiences of people with intellectual disabilities, who often struggled to achieve in areas including independent community inclusion and paid employment. Conclusion: Dedifferentiation has disadvantages for people with intellectual disabilities. It can underestimate and mask needs that people experience in relation to their disabilities. Policy and professional support might be improved by (1) recognising these limits and (2) incorporating people's real-world needs into support provision. [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: 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]

Despite the increasing longevity of people with intellectual disability, community care systems are ill prepared to support the choices of people with intellectual disabilities for ageing well. This study aims to understand ageing experiences among middle-aged adults with intellectual disabilities and their family carers with a focus on their perspectives of ageing well. Interviews were conducted with 10 middle-aged people with intellectual disabilities and 12 family carers; the interview data were thematically analysed. The participants highlighted the key elements of ageing well such as importance of living in a familiar place, having a reliable carer, nurturing independence, staying fit and healthy, and actively engaging in social activities. The findings suggest that middle-aged adults with intellectual disabilities can best age well through future planning, along with support services tailored to respond to their changing needs as they age. [ABSTRACT FROM AUTHOR]

Though the concept of encounter promises to move the field of social inclusion beyond the dichotomy of presence and participation, new work in political theory pushes encounter in a different direction, making freedom – not inclusion – the central value at stake. Interpretative video analysis was conducted on an online learning program "Supporting Inclusion" developed to help support workers recognise and facilitate encounters between people with intellectual disabilities and community members. Using the lens of freedom in the encounter offers an alternative framing of the significance and meaning of the online learning program's social interactions. Feminist theory can help show how unfreedom is a central problem facing people with intellectual disabilities, recasting encounter through the lens of freedom can help spark fresh insight into what makes encounter important. [ABSTRACT FROM AUTHOR]

Background The training of healthcare professionals impacts the health of individuals with intellectual disabilities (ID). This study presents an analysis of how medical students at the University of the Witwatersrand, Johannesburg, South Africa, are trained to treat this marginalised population. Methods This was an exploratory qualitative study using multiple methodologies, including a curricular review, 18 purposively selected key informants’ interviews, and 3 focus group discussions, with medical students across 4 relevant teaching departments. Using Lennox and Diggens’ curricular framework, thematic content analysis was conducted to identify dominant themes and subthemes. Results Of Lennox and Diggens’ 15-point model of knowledge, skills, and attitudes, 3 aspects were not taught, and attitudes fared the most poorly whereas skills fared the strongest. Differences in the quality and nature of training offered on clinical rotations were highlighted, and the practical exposure to patients with ID was found to be limited. Conclusions The shortfalls in content and unplanned clinical exposure suggest that a more focused teaching approach to people with ID will result in greater competence and confidence in graduates. [ABSTRACT FROM PUBLISHER]

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: 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]

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]

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 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 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]

The Family Network Method – Intellectual Disability (FNM-ID) was used to compare perspectives of people with mild intellectual disability and their support workers on family networks of people with intellectual disability. 138 participants with mild intellectual disability and support workers were interviewed, using the FNM-ID. Paired t-tests were used to examine differences in perspectives. Multiple regression analyses were used to examine divergence in perspectives. People with mild intellectual disability perceived their family networks to be larger and to provide more support than support workers did. Living in a residential setting and having higher levels of externalising behaviour were associated with differences in perspectives, whereas a higher level of internalising behaviour was associated with more similar views. Individuals with intellectual disability and support workers are unlikely to provide the same information about family networks of people with mild intellectual disability. Behavioural and emotional problems were associated with divergence in perspectives. [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: This research aims to study the role of people with intellectual disability in taking decisions regarding the support provided under the supported living model. Method: Interviews were conducted with 13 people with intellectual disability, and six support professionals with experience working in organisations offering personalised support. These covered the person's pathway, the support received, and their role in controlling this. Interviews were recorded and transcribed, and the data analysed through thematic content analysis in two consecutive phases, one descriptive and one interpretative. Results: While supported living aims to provide personalised solutions to individual needs, support is conditioned to a greater or lesser extent by the assessment professionals make regarding the autonomy of the person with intellectual disability. Conclusions: In order for individuals to make advances in their choice of, and control over, support received, people with intellectual disability must be empowered, and professional practices adapted through training. [ABSTRACT FROM AUTHOR]

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]

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]

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]

BackgroundThe quality of life (QOL) perceptions reported by adults with intellectual disability (ID) might not reflect their QOL as assessed by support staff or family members. The main purpose of this research was to examine the consistency and agreement between self-report and report-of-others ratings and to analyse if there are predictors for the differences between these respondents. MethodFor each person with an ID who completed a self-report measure (n = 69), a report-of-others section was conducted by interviewing one key institutional worker and one family member. QOL was assessed by the Escala Pessoal de Resultados, the Portuguese version of the Personal Outcomes Scale. ResultsThe findings highlighted a sizeable agreement among people with ID, support staff, and family members, although significant differences were found between the respondents. Among other determinants, the health status of the people with ID was the factor that most significantly contributed to the disagreement among the participants. ConclusionsThe results indicated that the QOL scores among respondents did not seem to be interchangeable, and different perspectives should be included in QOL assessments. [ABSTRACT FROM PUBLISHER]

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]

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: 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: Most theoretical models of self-determination suggest that both environmental and personal factors influence the development of self-determination. The design and implementation of interventions must be conducted with foreknowledge of such mediating and moderating factors if the intervention is to be successful. Methods: The purpose of this study was to examine the degree to which several personal factors and school characteristics affect and explain students' self-determination. A total of 232 students with intellectual disability from Spain participated. Their self-determination level was assessed by the ARC-INICO Scale. Results: Students with moderate levels of intellectual disability obtained significantly lower scores on self-determination than their peers with mild intellectual disability. There were significant differences in relation to the level of support needs and their experience with transition programs. The level of support needs was a significant predictor. Conclusion: These findings contribute to current research in this field and practical implications were discussed. [ABSTRACT FROM AUTHOR]

Background: Mechanical restraint refers to the use of materials or devices to restrict the behaviours of a person with a disability, where the restraint is neither for therapeutic purposes or required by law. The inappropriate use of mechanical restraint is recognised in legislation and policy as a violation of people's human rights, and a risk to their health and wellbeing. Understanding who is at risk of mechanical restraint may assist service providers to better support people with a disability. Method: State-wide data collected between July 2012 to June 2013 were sourced. Odds ratios were used to describe the associations between individual characteristics and whether an individual was subjected to mechanical restraint. Results: Individuals with certain characteristics, such as the presence of a hearing, physical, neurological, communication or visual impairment, and autism spectrum disorder had an increased likelihood of being mechanically restrained. Conclusion: Initiatives to reduce mechanical restraint should pay particular attention to the support needs of those with sensory impairments and complex communication support needs including those with autism spectrum disorder and those with a physical impairment. [ABSTRACT FROM AUTHOR]

Background: This study examined whether Motivational Interviewing (MI) follow-up calls improved the extent to which a specific therapeutic technique (Key Word Sign) presented in training was retained and implemented by staff supporting people with an intellectual disability. Method: Thirty-eight residential support workers who attended Key Word Sign (KWS) training were divided into three groups. One group received post training MI follow-up calls, the second received non-MI "check-in control" (CIC) follow-up calls and the third received no follow-up calls. Results: Both follow-up conditions outperformed the no follow-up condition on KWS knowledge retention and use. No significant differences were noted between the MI and CIC condition in this study. Conclusion: The results highlight the value of post-training follow-up in promoting knowledge retention and implementation of skills. Methodological challenges (including treatment fidelity issues across groups) prevented firm conclusions about the impact of MI from being drawn. [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: 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]

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]

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]

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 In this study we evaluated the long-term impact of a project in which families were individually supported in the realisation of personal future plans in the city of Almere, the Netherlands (2004–2006). Method We used fourth-generation evaluation principles. Data collection consisted of semistructured interviews with family members and adults with intellectual disability as well as focus groups with both groups. Photovoice was used as a strategy to engage 4 young adults with Down syndrome in the research. The results of the photovoice were presented to the community at a town hall meeting. The data were coded and common themes were created. Results The majority of the participants evaluated the project as having a positive impact on their quality of life. Conclusions The results of the study support individual future planning for young adults with intellectual disability and their families in the transition to adulthood. [ABSTRACT FROM AUTHOR]

BackgroundThe present study examined how parents assess the significance of friendship for quality of life in adolescents with mild intellectual disability. MethodThe study was based on qualitative semistructured interviews with 6 mothers. A thematic structural analysis was used to identify the themes. ResultsThe mothers compared their children with typically developing peers to examine to what extent their children’s relationships were working optimally. Social support and a better understanding of friendship were found to be essential conditions for establishing friendship. Development of independence and a sense of belonging with others were factors that were reported to be highly important in determining quality of life outcomes for their adolescent children. ConclusionsFrom a parental view, friendship in adolescents with mild intellectual disability seems to be highly important for their quality of life in the long term. However, well-functioning and lasting friendship for this group of people appears to require substantially more effort for their parents than for typically developing offspring. [ABSTRACT FROM PUBLISHER]

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.

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.

The article discusses how adults with intellectual disability are encouraged to take control of their lives through goal-setting and decision-making opportunities. Topics discussed include a proposal to use person-centered planning and individualized funding to identify preferences of individual and barriers to choice identified by adults with intellectual disability such as overprotective parents and the barriers identified by families that focuses on concerns about the person's vulnerability.

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]

The author suggests that the needs of people with intellectual disability and complex support needs necessitate a clinical workforce skilled in intra and inter agency collaboration to accommodate multiple support needs of people with intellectual disability, planning and implementing proactive supports and training and mentorship of the direct support personnel. He cites the Autralian government's commitment to connect scheme participants to mainstream services and natural supports.

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 Raising children with borderline to mild intellectual disability (BMID) and psychosocial problems may yield a strong need for support among parents, but evidence for this is lacking. The aim of this study was to investigate the prevalence of need for parenting support in this population, and the child and parent characteristics that influence this need. Method We obtained data from parents of 944 children aged 5–12 years with BMID (IQ 50–85) in the Netherlands: 134 (14.2%) of these parents had a need for parenting support. Results The results of multiple regression analyses revealed that parenting stress and child psychosocial problems, adjusted for age and gender of the child, were associated with a need for parenting support. Conclusions One in seven parents with a child with BMID has a need for parenting support. Determinants associated with a need for parenting support are parenting stress and child psychosocial problems. [ABSTRACT FROM AUTHOR]

Background In this study we aimed to develop a Spanish version of the Self-Efficacy/Social Support Scales for Activity for persons with Intellectual Disability (SE/SS-AID). Method A cross-sectional study was carried out in a sample of 117 individuals with intellectual disability (ID). The SE/SS-AID scales were translated into Spanish and their psychometric properties analysed. Results Confirmatory factor analysis showed acceptable fit (CFI = .94 for the SE-AID and .95 for the SS-AID), but RMSEA values outside of the optimal fit range (.28 and .15, respectively). Cronbach's α was calculated for the SE-AID, SS-AID-family, SS-AID-staff, and SS-AID-peers scales, with results from .80 to .82. Conclusions The scales show acceptable validity and reliability evidence. Use of this instrument will allow researchers to gain more knowledge about how personal and social factors influence participation in physical activity in Spanish-speaking people with ID. [ABSTRACT FROM AUTHOR]

Background Previous research indicates that work stress contributes to intentions to quit among direct care workers (DCWs) who provide services to people with intellectual and developmental disability (IDD). Though resources can help DCWs cope and remain in a job, little is known about how various dimensions of work stress and resources (social and personal resources) are associated with intentions to quit. Methods A total of 323 DCWs from 5 community-based IDD organisations completed a self-administered survey. We conducted multiple regression analyses to examine main and interaction effects of work stress and resources (work social support and internal locus of control) on intentions to quit. Results Work overload was a significant stressor, and work social support (i.e., supervisory support) was associated with low intentions to quit. The association between locus of control and intention to quit depended on the levels of a stressor: DCWs' lack of participation in decision-making. Conclusions Supervisory support and an internal locus of control may assist DCWs in managing their stress. [ABSTRACT FROM AUTHOR]