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This paper reviews why an understanding of mortality data in general, and in relation to people with intellectual disabilities in particular, is an important area of concern, and introduces the papers in this Special Edition.

Background:Historically, there has been higher and earlier mortality among people with intellectual disability as compared to the general population, but there have also been methodological problems and differences in the available studies. Method: Data were drawn from the 2012 National Intellectual Disability Database and the Census in Ireland. A standardized mortality ratio (SMR) was calculated, as well as average age at death. Ratios and differences were further examined for the influence of age, gender and level of intellectual disability. Results: Mortality in persons with intellectual disability was four times higher and they were, on average, dying 19 years earlier than peers in the general population. Women with intellectual disability were living longer than males with intellectual disability, but differences in survival as compared to the general population were greater for these women. There was little change in average age at death over 10 years, and death was earlier the more severe the level of intellectual disability. Discussion: The use of mortality ratios rather than average age at death alone is recommended, as well as greater standardization in use of data sets including the whole population, given high levels of earlier deaths in people with intellectual disability.

Background: Monitoring population trends including mortality within subgroups such as people with intellectual and developmental disabilities and between countries provides crucial information about the population's health and insights into underlying health concerns and the need for and effectiveness of public health efforts. Methods: Data from both US state intellectual and developmental disabilities service system administrative data sets and de-identified state Medicaid claims were used to calculate average age at death and crude mortality rates. Results: Average age at death for people in state intellectual and developmental disabilities systems was 50.4-58.7 years and 61.2-63.0 years in Medicaid data, with a crude adult mortality rate of 15.2 per thousand. Conclusions: Age at death remains lower and mortality rates higher for people with intellectual and developmental disabilities. Improved case finding (e.g. medical claims) could provide more complete mortality patterns for the population with intellectual and developmental disabilities to inform the range of access and receipt of supportive and health-related interventions and preventive care.

Objectives: The main objective of the study was to compare mortality for people with an intellectual disability (ID) to the general population in New South Wales (NSW), Australia. A second objective was to provide mortality data for people with an intellectual disability from NSW in a standardized format, which allows for international comparisons of the mortality of people with an intellectual disability. Design and setting: The study was a longitudinal cohort study linking retrospective data from the population databases of the NSW Department of Ageing, Disability and Home Care (ADHC) Intellectual Disability Services Dataset (intellectual disability cohort) to the mortality data set of the NSW Registry of Births, Deaths and Marriages (RBDM) for the period 1 June 2005 to 31 December 2011. Participants: The two groups of interest for this study were persons with an intellectual disability recorded in the intellectual disability cohort (953 deaths among 42 219 persons over 270 649 person-years of observation) and the rest of the NSW population (312 649 deaths among over 7 218 529 persons [2011 population] and 45 818 946 person-years of observation). Main outcome measures: In this study, we compared the intellectual disability cohort with the rest of the NSW population using age-adjusted death rates (ADRs), standardized mortality ratios (SMRs) and age standardized death rates (ASDRs) based upon the World Health Organization (WHO) standard population. Results: We found a significantly higher mortality in a cohort of people with an intellectual disability compared to the rest of the NSW population. The intellectual disability cohort compared to the rest of the NSW population had an SMR of 2.48 for all ages and an SMR of 3.15 for those aged 5-69 years. We also found an SMR for females (4.26) with an intellectual disability that was significantly higher than that for males (2.52) with an intellectual disability. The ASDR for the intellectual disability cohort was 4.04 (deaths per 1000) and the ASDR for the rest of the NSW population was 1.58, giving a comparative mortality ratio of 2.55. Conclusions: Our findings indicate excess mortality of people with an intellectual disability when compared to the general population. They also indicate that females with an intellectual disability have a higher relative mortality compared to female same-aged general population peers, and also males with an intellectual disability, a finding replicated in other similar cohort studies. For international comparison using the WHO standard population, our intellectual disability cohort (ages 5-69 years) had a mortality of 4.04 deaths per 1000.

Background: This paper reviews what is currently known about mortality among Canadians with intellectual and developmental disabilities and describes opportunities for ongoing monitoring. Methods: In-hospital mortality among adults with intellectual and developmental disabilities in Ontario was examined using hospital data. Mortality was compared between age-, sex- and residence area-matched groups of Manitobans with and without intellectual and developmental disabilities using linked administrative data. A retrospective cohort study of mortality among individuals with intellectual and developmental disabilities in a region of Ontario focused on measuring excess mortality and risk factors. Findings: There is evidence of excess mortality in persons with intellectual and developmental disabilities in Canada. Some of the excess is attributable to comorbidities that are more common in this population. Women may have a greater risk of death than men. Excess mortality occurs at all ages but is more pronounced in early life. Discussion: High-quality ongoing monitoring of mortality among individuals with intellectual and developmental disabilities is possible in Canada. Examination of sex differences should be a priority.

Background: At present, there is limited statistical information about mortality of people with intellectual disabilities in England. This study explores the data that are currently available. Materials and Methods: Four recent sources of data about mortality of people with intellectual disabilities in England are reviewed: the Confidential Inquiry into Premature Deaths of People with intellectual disabilities (CIPOLD); the 2013 Joint Health and Social Care Intellectual Disability Self-assessment Exercise; local registers of people with intellectual disability; and analysis of Cause of Death certificates. Results: Available data confirm that people with intellectual disability have a shorter lifespan and increased risk of early death when compared with the general population. The standardized mortality rate for people with intellectual disabilities is approximately twice that of the general population in England, with little indication of any reduction in this over time. Conclusions: Comprehensive data about mortality of people with intellectual disabilities that take account of the age and sex distribution of the population are currently lacking in England. Existing data suggest persistent inequalities between people with intellectual disabilities and the general population. There is an urgent need for better monitoring mechanisms and actions to address these.

Background: Welfare for the disabled is becoming an important issue in China and care for people with intellectual disability is challenging because of the inadequacies in formal support and the social service system. Material and Method: Based on ethnographic research in two villages in North China, this paper analyses the dilemmas of family care for people with intellectual disability. The essential data is the ethnographic record of three cases. Results: Rural families strive to provide care through a set of arrangements and bear tremendous stress in the process. Conclusion: Family care for people with intellectual disability in rural China has been increasingly challenged by the forces of labour migration, demographic changes and the ever-growing processes of commoditization. The role of the state has to be strengthened in welfare provision to balance the weakened family care ethos in transforming societies.

Promoting community participation for people with intellectual disability through encounter with strangers is an integral part of the mission of disability support workers. This paper offers detailed micro-level analysis of the practices of support workers when they accompany a person with intellectual disability outside their home and explores the subtle differences which make some staff practices more effective than others in promoting more convivial encounters with strangers. Based on 160 h of observations of twenty-six adults with intellectual disability in a variety of public places, and interviews and focus groups with their support workers, the paper points to some of the critical judgements support workers need to make when considering whether, when and how to initiate or intervene in such encounters.

Background: There is a need to better understand implementation processes of health interventions. This study describes the implementation of a multicomponent intervention to improve diet and physical activity among adults with intellectual disabilities, viewed from the perspectives of staff and managers. Materials and Methods: All health ambassadors (n = 12), appointed among staff and managers (n = 5) taking part of a health intervention in community residences in Sweden, were interviewed with a focus on barriers and facilitators regarding implementation of the intervention. Data were analysed using content analysis. Results: The overarching theme describes the importance of supporting motivation for change among managers, caregivers and residents. The experiences of the implementation process are described in four main categories: intervention characteristics, individual commitment, organizational capacity and societal factors. Conclusion: The implementation can be facilitated by a programme meeting perceived needs, a flexible and participatory approach, external input and an extensive preparation phase.

Background: Migrating nursing labour inadvertently reinforces South Africa's care drain, contributes to a global care crisis and forces us to reconsider migration motivation. This paper highlights issues that complicate psychiatric intellectual disability nursing care and identifies loci for change in an attempt to redress this care challenge. Method: An exploratory descriptive-interpretivist method investigated nurses' experiences of psychiatric intellectual disability work. Sixteen free association narrative interviews were collected in 2013. Thematic analysis allowed findings to emerge from the data. Results: Findings reflect a number of themes: "relational interaction", "care burden", "system fatigue", "infantilising dynamic of care" and "resources for coping". Conclusion: System fatigue contributes more to negative experiences of providing care than direct patient work, and nurses experience more relational reciprocity from patients than from institutional management. Organizations should meet nurses' needs for burnout prevention, afford them impact in implementing institutional controls, and engage in a non-exploitative and non-exclusionary way.

Background: People with intellectual disabilities experience high rates of falls. Balance and gait problems are common in people with intellectual disabilities, increasing the likelihood of falls; thus, tailored exercise interventions to improve gait and balance are recommended. The present authors set up a physiotherapy-led falls pathway service (FPS) for clients with intellectual disabilities to promote exercise and prevent falls. Method: Fifty clients with intellectual disabilities were referred in an 18-month period, 35 (70%) were prescribed exercise and 27 (54%) completed the exercise programme. The FPS was evaluated using the following outcome measures: Tinetti score, number of falls, clinician's judgement and carer's judgement. Results: Improvement in balance and mobility and a decrease in the number of falls were reported post-exercise intervention. Conclusion: Physiotherapists have a key role to play in promoting exercise to prevent falls in services for people with intellectual disabilities. This evaluation suggests positive outcomes for these clients to reduce or prevent further falls.

Background: Persons with less severe disabilities are able to express their needs and show initiatives in social contacts, persons with profound intellectual and multiple disabilities (PIMD), however, depend on others for this. This study analysed the structure of informal networks of persons with PIMD. Materials and Methods: Data concerning the number, type and frequency of contacts were collected in 205 persons with PIMD. Results: The mean number of contact persons was 5.1 (range: 0-26, SD: 4.2) per year. 79.4% of the contact persons are family, with an average of 72.3 contacts per year. Parents had significantly more contact compared to the other informal contact persons. In 2.2% of the sample contacts with peers were seen. Conclusions: The informal networks of persons with PIMD consist mainly of family. The question arises how informal networks can be expanded and which role professionals have in this process.

Background: To describe the characteristics of those with autism spectrum disorder (ASD) treated within a forensic intellectual disability hospital and to compare them with those without ASD. Method: Service evaluation of a cohort of 138 patients treated over a 6-year period. Results: Of the 138, 42 had an ASD. Personality disorders and harmful use or dependence on drugs were significantly lower in the ASD group. The ASD group was less likely to be subject to criminal sections or restriction orders. Self-harm was significantly higher in the ASD group. There were no differences in the length of stay and direction of care pathway. Conclusions: Although the ASD and non-ASD groups differ on clinical and forensic characteristics, their treatment outcomes appear similar. This suggests that the diagnostic category of ASD alone may be inadequate in predicting the treatment outcome. There is a case to identify distinct typologies within the ASD group.

Background: This study examines the experiences of qualified nurses working with individuals diagnosed with both intellectual disability and personality disorder (PD) in a medium-secure forensic intellectual disability setting. Potential training needs are highlighted, as well as other ways in which services could better support staff to work effectively with this client group. Method: In-depth, semi-structured interviews were used to explore the nine participants' experiences; the narratives were analysed with interpretative phenomenological analysis (IPA). Results: Four master themes emerged from (i) disorder overriding disability; (ii) resilience; (iii) ambivalence towards label and (iv) knowledge. Conclusion: The findings highlight that for these participants, the clients' intellectual disability appeared to be lost under the complexity of the PD diagnosis. The clinical implications are discussed in terms of developing training, supervision and support.

Background: A stable assessment of cognition is of paramount importance for forensic psychiatric patients (FPP). The purpose of this study was to compare repeated measures of IQ scores in FPPs with and without intellectual disability. Methods: Repeated measurements of IQ scores in FPPs (n = 176) were collected. Differences between tests were computed, and each IQ score was categorized. Additionally, t-tests and regression analyses were performed. Results: Differences of 10 points or more were found in 66% of the cases comparing WAIS-III with RAVEN scores. Fisher's exact test revealed differences between two WAIS-III scores and the WAIS categories. The WAIS-III did not predict other IQs (WAIS or RAVEN) in participants with intellectual disability. Discussion: This study showed that stability or interchangeability of scores is lacking, especially in individuals with intellectual disability. Caution in interpreting IQ scores is therefore recommended, and the use of the unitary concept of IQ should be discouraged.

Background: Following a series of fatal choking incidents in one UK specialist service, this study evaluated the detail included in incident reporting. This study compared the enhanced reporting system in the specialist service with the national reporting and learning system. Methods: Eligible reports were selected from a national organization and a specialist service using search terms relevant to adults with intellectual disability and/or mental ill health. Qualitative analysis was completed with comparison of themes identified in both sets of reports. Findings: The numbers of choking incidents identified in national reports suggest underreporting compared with the specialist service and varying levels of severity. Themes included trends in timing, care setting and food textures as perceived by staff. Conclusions: This study demonstrates paucity of detail in reporting in systems without additional question prompts. Adding these questions requires staff to include greater detail which enables learning and risk mitigation to take place.

Background: Caregivers have an intimate knowledge of the individuals they care for and are therefore an important source of information on pain experiences. They are often relied upon to recognize pain-related behaviours and report them, but little is known as to how they experience their role. Methods: Information was collected from 11 caregivers using semi-structured interviews about their experiences of caring for adults with intellectual disabilities who were suspected or definitely in pain. Transcripts were analysed using Interpretative Phenomenological Analysis. Results: Six superordinate themes were identified from participants' experiences: suffering in silence; searching for meaning to explain the complaint; knowledge and skills needed to recognize and manage pain; perceptions of the pain experience; acting to try and reduce pain; and the emotional impact of pain. Conclusions: There seems an art to detect pain using existing skills and knowledge of the individual's ways of expressing pain. Despite best efforts, recognizing and treating pain was experienced as complex and ambiguous. Some caregivers described a negative emotional impact and dissatisfaction with the management of pain by health care services.

Background: The vast health inequities experienced by people with intellectual disability remain indisputable. Persistent and contemporary challenges exist for primary healthcare providers and researchers working to contribute to improvements to the health and well-being of people with intellectual disability. Over two decades after the only review of supports for primary healthcare providers was published, this paper contributes to an evolving research agenda that aims to make meaningful gains in health-related outcomes for this group. Methods: The present authors updated the existing review by searching the international literature for developments and evaluations of multinational models of care. Results: Based on our review, we present three strategies to support primary healthcare providers: (i) effectively using what we know, (ii) considering other strategies that offer support to primary healthcare professionals and (iii) researching primary health care at the system level. Conclusions: Strengthening primary care by supporting equitable provision of health-related care for people with intellectual disability is a much needed step towards improving health outcomes among people with intellectual disability. More descriptive quantitative and qualitative research, as well as intervention-based research underpinned by rigorous mixed-methods evaluating these strategies at the primary care level, which is sensitive to the needs of people with intellectual disability will assist primary care providers to provide better care and achieve better health outcomes.

Background: Despite awareness of the health inequalities experienced by people with intellectual disability, their health status remains poor. Inequalities in health outcomes are manifest in higher morbidity and rates of premature death. Contributing factors include the barriers encountered in accessing and receiving high-quality health care. Aims: This paper outlines health inequalities experienced by people with intellectual disability and focuses on the opportunities medical education provides to address these. Strategies to ensure that health professional education is inclusive of and relevant to people with disabilities are highlighted. Conclusions: The barriers experienced by people with intellectual disabilities to the receipt of high-quality health care include the attitudes, knowledge and skills of doctors. Improving medical education to ensure doctors are better equipped is one strategy to address these barriers. Improving health enhances quality of life, enables engagement and optimizes opportunities to participate in and contribute to the social and economic life of communities.

Background: The current understanding of health inequities in people with intellectual disabilities does not readily translate into improvements in health status or health care. To identify opportunities for action, the 2013 IASSIDD health SIRG conference organized ten intensive workshops. Materials and methods: The workshops each addressed separate topics, a workshop of self advocated was included as well. Workshop reports were analyzed using a qualitative thematical analysis approach. Results: A total of 134 participants attended the workshops. The analysis of the workshop reports resulted in three main themes: approach, know-how and visibility and a pervasive theme, that of person-centered support. Conclusion: Everyone that can contribute to better care should be empowered and facilitated to do so, environments should be accessible and inclusive in nature. Sharing experiences, expertise and data sources within and outside intellectual disabilities care and research were mentioned as ways forward. Strong (policy) visions, felt urgency and shared responsibility are required.

Background: Statements or commitments making use of numbers have an important place in government policy. They appear at all stages of the policy process: campaigning, formulation, monitoring and evaluation. Many types of sources are involved including research studies, national survey information, routine operational data collections and special systems devised to monitor particular initiatives. Method: The paper presents examples of policy uses of numerical evidence, and some sources of data that have been used to support them in the field of care for people with intellectual developmental disability in England. Conclusions: Different levels of precision or coverage are required at different stages of the process. Different types of numerical data are appropriate at the various stages of the policy process.

Background: Secondary prevention involves the early detection of disease while it is asymptomatic to prevent its progression. For adults with intellectual and developmental disabilities, secondary prevention is critical as they may not have the ability to recognize the early signs and symptoms of disease or lack accessible information about these. Methods: Linked administrative health and social service data were used to document uptake related to four secondary prevention guidelines among adults with intellectual and developmental disabilities. Rates were compared to those from a general population sample representing the same age ranges. Results: Of 22% of adults with intellectual and developmental disabilities had a periodic health examination in a two-year period (compared to 26.4% of adults without intellectual and developmental disabilities). Adults with intellectual and developmental disabilities were less likely to undergo recommended age and gender-specific screening for the three types of cancer studied (colorectal, breast and cervical). Conclusions: Adults with intellectual and developmental disabilities in Ontario experience disparities in secondary prevention. As changes to primary care delivery and secondary prevention recommendations in the province and elsewhere continue to evolve, close monitoring of the impacts on adults with intellectual and developmental disabilities combined with dedicated efforts to increase access is warranted.

Background: The purpose of this study was to examine parent report of conversations about difference and disability in families of adolescents with intellectual disability. Materials and Methods: Participants included 50 parents (44 mothers, four fathers, and two other caregivers) and their adolescents with intellectual disability (M age = 15.9). Parents provided written responses to open-ended questions regarding conversations with their adolescent. Adolescents completed measures of self-concept and self-determination. Results: The majority (66%) of parents reported talking to their adolescent about difference and/or disability. Consistent with previous research, some of these conversations were in response to social exclusion (e.g. child was bullied). Parents who knew the aetiology of their child's disability were significantly more likely to talk with their child about his or her disabling condition. Conclusions: Parents' narratives illustrate their struggle to explain disability to their adolescent. Professionals are challenged to consider how to promote proactive conversations between parents and adolescents.

Background: Evidenced-based health promotion programmes for youth with intellectual and developmental disabilities (I/DD) are notably absent. Barriers include a lack of understanding of how to adapt existing evidence-based programmes to their needs, maximize inclusion and support mutual goals of health and autonomy. Methods: We undertook a community-engaged process to adapt a school-based nutrition intervention in a residential school for youth with I/DD. Focus groups and interviews with school staff elicited recommendations for adaptation strategies; these were then reviewed by an expert panel. Results: Adaptations were developed to address needs in three categories: food-related challenges among students, adjusting to change and transition and social environment factors. Choice and heterogeneity were overarching themes across the adaptation categories. Conclusions: Future research should consider community-engaged approaches for adaptation so that youth with I/DD can participate and benefit from evidence-based health promotion programmes to their maximum potential.

Background: Internationally, people with intellectual disability are socially marginalized, and their rights under the United Nations Convention for the Rights of Persons with Disabilities (CRPD) are often ignored. Aims: This paper aims to define the key concerns of adults with an intellectual disability in relation to their participation in society using an inclusive research strategy for both data gathering and data analysis. Methods: A national study involving 23 focus groups and 168 persons was conducted on the island of Ireland with people with intellectual disability as co-facilitators. Findings: A thematic content analysis was undertaken of the verbatim transcripts initially by university co-researchers, and 19 themes were identified. Co-researchers with intellectual disability joined in identifying the eight core themes. These were as follows: living options, employment, relationships, citizenship, leisure time, money management, self-advocacy, and communication. Discussion: The concerns are discussed within the framework of the CRPD, and implications for transforming service policy are drawn.

Background: People with intellectual disabilities face attitudinal and service barriers when attempting to form intimate relationships. To date, their experiences and views are under-represented in the existing evidence base. Method: The aim of this study was to carry out an interpretative phenomenological analysis exploring the experience of intimate relationships for nine adults with intellectual disabilities. Results: Four main themes were identified: desiring relationships; expressing sexuality; having relationships; and who has control? Together these themes demonstrated that intimate relationships were desired and important to all participants, fulfilling a variety of their needs. In addition, participants faced a number of challenges related to intimate relationships. Conclusion: The findings raise questions about how best to support people with intellectual disabilities with sexuality and intimate relationships. Implications for caregivers and services are discussed.

Background: Although United States employment policies have increased support for people with disabilities working in community settings, the unemployment rate for this population remains very high, particularly for people with intellectual or developmental disabilities. Research shows that job developers (direct support professionals who assist people with disabilities to secure, maintain, and advance in employment) are critical to achieving quality employment outcomes. However, the extent to which job developers use practices that are considered promising in their field (such as engaging families) is not well known. Methods: This brief report summarizes findings from a qualitative study about the extent to which job developers use the recommended promising practices when working with individuals and family members. Results: Qualitative analysis identified the following themes among job developers: factors affecting family involvement, perceptions of family involvement, and the influence of expectation on strategies. Conclusions: The field of job development faces a challenge common to many professions: translating research on best practices to those who need this knowledge the most and can use it to greatest effect. Future research should address how community rehabilitation providers (CRPs) communicate about and instill best practices, including effective family engagement, within their organizations.

Background: Restrictive measures may have important physical and psychological consequences on all persons involved. The current study examined how these are perceived by persons with intellectual disabilities and staff. Materials and Methods: Interviews were conducted with eight persons with intellectual disabilities who experienced a restrictive measure and their care providers. They were queried on their understanding of the restrictive measure, its impact on the relationship, their emotions and alternative interventions. Results: Restrictive measures were experienced negatively by persons with intellectual disabilities and their care providers. Service users reported feeling sad and angry, whereas staff mentioned feeling anxious. Moreover, persons with intellectual disabilities appeared to understand the goal of restrictive measures (e.g. ensuring their own and others' safety) and identified alternative interventions (e.g. speaking with a staff member or taking a walk). Conclusion: This study sheds further light on how persons with intellectual disabilities and staff experience the application of restrictive measures. Debriefing sessions with service users and staff may help minimize negative consequences.

Background: The Manchester Attachment Scale-Third party observational measure (MAST) was developed to assess secure attachment style for adults with intellectual disabilities. The psychometric properties of the MAST were examined. Materials and Methods: Professional carers (N = 40) completed the MAST and measures related to the construct of attachment theory [Edward Zigler-Yale Personality Questionnaire (EZPQ), Emotional Rating Scale (ERS) and the Learning Disability Casemix Scale (LDCS)] regarding individuals with an intellectual disability (N = 57). Individuals with an intellectual disability (N = 14) completed the Self-report Assessment of Attachment Security (SRAAS). Results: The MAST was found to have good internal consistency, test-retest reliability and convergent validity. MAST scores were negatively correlated with level of intellectual disability and challenging behaviour (CB) as measured by LDCS. Conclusions: Support was provided for the reliability and validity of the MAST and a relationship between attachment security, level of intellectual disability and CB. The results of the study and implications of attachment theory for service provision are discussed.

Background: The negative health impacts of prolonged caregiving are widely reported. However, there is a paucity of evidence concerning the impacts of a lifetime of caring on older parents of offspring with learning disabilities. Design and Methods: An exploratory postal survey including the Medical Outcome Study (Short Form) 36 version 2 (SF-36v2) was completed by 100 older parent carers. The reported survey is part of a larger mixed method study including in-depth interviews. Results: The majority of respondents (n = 91) reported caring for 50 h or more per week with multiple caregiving duties. While the SF-36v2 reported physical health of older parent carers to be similar to UK norms, their mental health was significantly reduced. Implications for practice: These important findings highlight the vulnerability of ageing parents of offspring with learning disabilities. This previously underreported situation warrants further investigation and urgent attention from health and social care agencies and professionals.

Background: Recent attention to health of people with intellectual disabilities has used a health disparities framework. Building on historical context, the paper summarizes what is known about health disparities from reports and research and provides direction on what to do to reduce these disparities among adults with intellectual disabilities. Methods: The present authors examined literature from 2002 to 2011 on health disparities and people with disabilities looking for broad themes on documenting disparities and on research approaches and methods. Results: Multiple countries published reports on health of people with intellectual disabilities. Researchers summarized existing research within a health disparities framework. A number of promising methodologies are identified such as health services research, health indicators, enhanced surveillance and mixed-methods. Conclusions: Strategies to reduce health disparities include use of data to educate decision makers, attention to social determinants and a life-course model and emphasis on leveraging inclusion in mainstream services where possible.

Background: Increasingly, people with intellectual and developmental disabilities (I/DD) are supported to participate in least-restricted settings in the community. However, little is known about desired community participation choice and control of people with I/DD, nor effective strategies to support full participation. Furthermore, service providers of this population in community and residential settings have unique roles in influencing choice and control in community participation. Research Aim: The purpose of this project is to empower adults with I/DD in community participation by collaborating with agency staff and administrators to strategize change in service provision and programming. Methods: This article describes the development, implementation and mixed-methods evaluation of a pilot staff intervention. Results: Findings indicate staff who participated in pilot intervention report increased confidence in supporting adults with I/DD to participate in their communities. Conclusions: Intervention development has implications for staff, administrators and agencies in planning and executing opportunities to support choice and control for community participation for adults with I/DD.

Background: The role of support workers and other professionals in the psychotherapeutic process has been commented upon but not as yet been systematically investigated. Method: To explore their views and expectations of cognitive behaviour therapy (CBT) for adults with intellectual disabilities, eleven paid support workers and professionals were recruited and interviewed before the CBT sessions commenced for their service users and nine took part in the second interview that took place after nine sessions. Results: Thematic Analysis of the interview transcripts indicates that staff members do not perceive CBT as a long-term solution for psychological problems have little knowledge of CBT and do not feel included in the process. Nevertheless, after nine sessions, most participants reported improved psychological well-being for their service users and expressed a wish for longer-term involvement of the therapist. Conclusions: The results suggest that for CBT to be effective in the longer term, the therapist is required to consider a wider systemic approach including staff training and supervision, staff and management consultancy and creating a delicate balance between confidentiality and sharing the psychological formulation with "significant others" to ensure maintenance and generalisation of improved psychological well-being.

Background: In adolescents with intellectual disability, the management of obesity is a crucial issue, yet also quite complex because of their particular perception of themselves. This study investigated the relationship between self-perception variables and morphological variables and their changes after a 9-month Adapted Physical Activity (APA) programme. Materials and Methods: Twenty-three adolescents with intellectual disability responded to an adapted questionnaire, including the PSI-VSF-ID and a nine-drawing body silhouette scale. Anthropometric and body composition indicators were measured before and after the APA programme. Results: The main predictor of the adolescents' self-perceptions was the inclination towards positive illusory bias before the intervention; obesity awareness ranked second. Morphological measurements did not contribute in the same way to self-perceptions in the initial and final data. Conclusions: This study confirms the interest of weight management programmes for adolescents with intellectual disability and points to the need to take positive illusory bias more fully into account in the study of self-perception.

Background: The Healthy Hearing (HH) programme at the Special Olympics (SO) revealed hearing disorders in between 16 and 40% of athletes. However, it is not clear whether these prevalence represents the entire population with intellectual disability. Therefore, this study compares the hearing status of SO athletes with an intellectual disability (ID) to students with ID at a special needs school. Materials and Methods: The HH screening was performed in 637 athletes (mean age 27.1 years, range 9.7-70.6 years) during the 2008 German SO Summer Games - and in 198 special needs students (mean age 12.7 years, range 6.7-20.0 years). Results: Twenty-two per cent of athletes and 18% of students failed the HH screening. Approximately 60% of the total participants received recommendations for further follow-up and treatment without between-group differences. Conclusions: The results of the HH screening at SO events are assumed to be representative of children and adolescents with ID in special needs schools.

Background: Since 1992, the diagnosis and classification of intellectual disability has been dependent upon three constructs: intelligence, adaptive behaviour and support needs (Luckasson "et al." 1992. Mental Retardation: Definition, Classification and Systems of Support. American Association on Intellectual and Developmental Disability, Washington, DC). While the methods and instruments to measure intelligence and adaptive behaviour are well established and generally accepted, the measurement and classification of support needs is still in its infancy. This article explores the measurement and classification of support needs. Method: A study is presented comparing scores on the "ICF" (WHO, 2001) based "I-CAN v4.2" support needs assessment and planning tool with expert clinical judgment using a proposed classification of support needs. A logical classification algorithm was developed and validated on a separate sample. Results: Good internal consistency (range 0.73-0.91, N = 186) and criterion validity (? = 0.94, n = 49) were found. Conclusions: Further advances in our understanding and measurement of support needs could change the way we assess, describe and classify disability.

Background: While inclusive research has become an important stream in research with people with intellectual disabilities, there is a tension between the possibly empowering research process and the strength of the research itself to make social change happen. In this paper, we explore the contribution of two inclusive qualitative research studies in Australia and the Republic of Ireland to change in policy and legislation. Materials and Methods: Both studies used qualitative methods including life stories and focus groups to explore the issue of sexuality and relationships. In both studies, people with intellectual disabilities were actively involved in undertaking the research. Results: Both studies revealed that it was difficult for people with intellectual disabilities to express their sexuality openly or to form adult relationships. Conclusions: Both studies were used by people with intellectual disabilities and their supporters to promote change in which they had a heard voice.

Background: The role of the support worker in self-advocacy groups for people with intellectual disability is pivotal in setting the scene for empowerment. However, despite the growing importance of the role, it has attracted very little scrutiny. Method: The study developed an inclusive team approach working alongside researchers labelled with learning difficulties. Emphasis was placed on making all aspects of the research cycle accessible to the team. A variety of qualitative methods were used. Results: Despite supporters' allegiances to disability equality and their emphasis on reflexivity, many crucial aspects of organizational practice and support remained hidden. However, an emerging shared narrative about the potential of people first implied the possibility of increased collaboration. This was evidenced in some of the groups. Conclusions: Where problematic practice was discussed, supporters were open to developing alternative approaches. Acknowledging members contributions alongside the work of their supporters helped nurture more collaborative relationships.

Background: Funding bodies in Australia and the United Kingdom require research on issues that affect the lives of people with intellectual disability to be inclusive. Debate continues about the nature and benefits of inclusive research, which has become an umbrella term encompassing a broad spectrum of approaches. Method: This study proposes one method of inclusive research, the "collaborative group" approach. It examines the processes used to conduct a study involving academics and self-advocates, presenting findings derived from an inductive analysis of field note data, interview and meeting transcripts. Results: Five components are identified: shared and distinct purposes of participants equally valued, shared involvement and distinct contributions equally valued, flexible, adapted research methods, working as a group with trusting relationships and dispersed power, and scaffolding for inclusion. Conclusions: This collaborative group method potentially results in better research than either academics or self-advocates could achieve alone and has multiple knowledge outcomes with differing accessibility and complexity.

Background: Inclusive research teams typically describe their experiences and analyse the type of involvement of researchers with disability, but the process of building research teams and the need for research training still remain underexplored in the literature. Materials and Method: Four researchers with intellectual disabilities and four academic researchers developed an inclusive research team. The team conducted 15 research training sessions, focused on investigating the well-being of older women with intellectual disabilities. They used mobile technology to support research skills acquisition. Results: Findings included the experiences of all team members regarding the team building during training. Conclusions: To become an effective inclusive research team, all team members, regardless of ability, need to bring their own experiences and also learn necessary research skills. This paper highlights the need for team building, joint research training among all members of the research team and strategies supporting the peer-mentoring within the team.

Background: Inclusive research with people with intellectual disabilities is growing internationally but with few studies examining its feasibility. Methods: In undertaking a national study exploring what life was like in Ireland for people with intellectual disabilities, a community of practice was developed involving a core group of co-researchers: five people with intellectual disabilities, four university researchers and three service support staff. An additional cadre of 15 co-researchers with intellectual disabilities was recruited to undertake data gathering and analysis with 23 focus groups involving 168 participants. The research experience was documented through oral feedback, progress reports, minutes and a project review. Results and Conclusions: The key learning is documented arising from the setting up of an inclusive advisory group and implementation of each of six research steps. The study demonstrates feasibility and the added value of university co-researchers recruiting and developing skills together with co-researchers with intellectual disabilities. Topics for further research and development are identified.

Background: The inclusion of people with intellectual disability in research is a common requirement of research funding. Little conceptual clarity is available to guide the conduct of inclusive research or judge its fidelity, there is minimal evidence of its impact, and questions remain about its feasibility and rigour. Method: A comprehensive review of the peer reviewed literature and key texts was undertaken to more clearly conceptualize inclusive research and identify the issues associated with ways of approaching it. Finding: Three approaches to inclusive research were identified: advisory, leading and controlling, and collaborative group. Using the literature and the authors' own experience, each approach is illustrated and discussed. Conclusions: A clearer conceptual framework is developed to guide researchers and administrators as they consider inclusive research and its feasibility to particular research questions. A strong self-advocacy movement is identified as one of the conditions necessary for inclusive research to flourish.

Background: The aim of this study was to examine the effect of volunteering for Special Olympics Games (SOG) on the attitudes of volunteers towards inclusion of people with intellectual disabilities. Method: A repeated measures design with 3-week follow-up was used. There were 100 volunteers recruited for the study and 90 of them completed the study. Results: It was revealed that a 1-week exposure to the SOG improved volunteers' attitudes towards inclusion of people with intellectual disabilities significantly (P = 0.016). Females had more positive attitudes than males at all three time points of measures. The interaction effect of gender was not significant. Conclusions: A 1-week exposure to the SOG can enhance volunteers' positive attitudes towards inclusion of people with intellectual disabilities and this effect can maintain for up to a month.

Background: The aim of this study was to establish the psychometric properties of the Korean Behaviour Problems Inventory (BPI-01). Methods: Fifty-five allied professionals completed a content validity questionnaire about the Korean BPI-01. To examine reliability, 52 individuals with intellectual disabilities residing in a medium-sized residential home were evaluated by two occupational therapists trained in the administration of the Korean BPI-01 through interviews with caregivers who had known the residents at least 6 months. Results: Allied professionals' responses supported the content validity of the Korean BPI-01. The results of intraclass correlation coefficients and Cronbach's a indicate that the Korean BPI-01 is a reliable instrument. Conclusions: The results of the present study indicate that the Korean BPI-01 holds adequate content validity and reliability for measuring behavioural problems in individuals with intellectual disabilities in Korean clinical settings.

Background: High friendship quality is often defined by high levels of intimacy, companionship, closeness and low levels of conflict. Quality friendships develop over time and may be influenced by both behaviour problems and social skills. Materials and methods: Participants were 103, 13-year-old adolescents with or without intellectual disabilities in the United States. Adolescents and their mothers participated in an open-ended interview of friendship quality and completed measures of social skills and behaviour problems. This study addressed differences in friendship quality between children with and without intellectual disabilities and explored early indicators of friendship development. Results: Adolescents with intellectual disabilities (ID) had friendships characterized by significantly lower levels of warmth/closeness and positive reciprocity than their typically developing peers. Likewise, adolescents with ID spent less time with friends outside of school and were less likely to have a cohesive group of friends. Social skills and behaviour problems at age 9 predicted friendship quality at age 13 above and beyond disability status, with higher levels of social skills and lower levels of behaviour problems related to higher ratings on measures of friendship quality. Conclusions: It appears that adolescents with intellectual disabilities have friendships that are characterized by less warmth/closeness and less positive reciprocity than the friendships of their typically developing peers. This discrepancy appears to be impacted by early social skills and behaviour problems in addition to the presence of the intellectual disability.

Intervention for behavioural and psychiatric disorders in people with intellectual disabilities often only takes place once these conditions are well established and more resistant to change. As an alternative, this paper promotes a public health prevention model and maps out opportunities for intervention at primary, secondary and tertiary levels. The resulting model is partly derived from generic research into these issues and partly on specific evidence on interventions for people with intellectual disabilities; it also contains more theoretical considerations. The additional research that is necessary to demonstrate the efficacy of the interventions identified is also considered. Central to this proposal is a greater integration of issues for people with intellectual disabilities within much broader policy and research agendas.

Background: Obsessive-compulsive (O-C) traits, and excessive food intake are well known behavioural manifestations among individuals with Prader-Willi Syndrome (PWS). Other unwanted behaviours are also frequently observed, but they need a more specific investigation, especially in the adult population. Methods: The behaviour of 31 PWS adults was investigated via the Symptom Checklist-90-Revised (SCL-90-R), the Yale-Brown Obsessive Compulsive Scale Symptom Checklist (Y-BOCS-SC), and the Prader-Willi Behavioural Checklist (PBC). The PBC is a quick screening questionnaire prompted specifically for the investigation on adults with PWS. Results: Statistical clustering revealed two patterns of unwanted behaviours from the PBC. Behaviours belonging to the first cluster (e.g. Excessive food intake, Skin picking) appear to be linked to the usual phenotypic manifestation of PWS. By contrast, many other behaviours (e.g. some O-C symptoms and aggressive actions) could show a relationship also to individual psychopathologies. Conclusions: Both internal (Anxiety and Depression) and external (Hostility) difficulties in managing impulses should account for individually distinct behaviours in adults with PWS.

Background: There have been a number of studies of treatment for men with intellectual disabilities and sexually abusive behaviour but few follow-up studies. Our aim was to follow up men with intellectual disabilities who had attended group cognitive behavioural treatment (CBT) for sexually abusive behaviour. Method Thirty-four men (from seven treatment sites) were followed up. All had attended SOTSEC-ID groups. The mean length of follow-up, since the end of the treatment group, was 44 months (SD 28.7, range 15-106 months). Results: The statistically significant improvements in sexual knowledge, empathy and cognitive distortions that occurred during treatment were maintained at follow-up. In all, 11 of the 34 (32%) men showed further sexually abusive behaviour, but only two of these men received convictions. Analyses of the variables associated with further sexually abusive behaviour indicated that a diagnosis of autism was associated with a higher likelihood of further sexually abusive behaviour. Conclusions: This study provides some evidence of the longer-term effectiveness of group CBT for men with intellectual disabilities and sexually abusive behaviour.

Background: Many people with intellectual disabilities display high levels of anger, and cognitive-behavioural anger management interventions are used routinely. However, for these methods to be used optimally, a better understanding is needed of different forms of anger assessment. The aim of this study was to investigate the relationship of a range of measures to self- and carer reports of anger expression, including instruments used to assess mental health and challenging behaviour. Method: Adults with intellectual disabilities, who had been identified as having problems with anger control, their key-workers and home carers all rated the service users' trait anger, using parallel versions of the same instrument (the Provocation Inventory). In addition, service users completed a battery of mental health assessments (the Glasgow Depression Scale, Glasgow Anxiety Scale and Rosenberg Self-Esteem Scale), and both groups of carers completed a battery of challenging behaviour measures (the Hyperactivity and Irritability domains of the Aberrant Behavior Checklist and the Modified Overt Anger Scale). Results: Participants had high levels of mental health problems (depression: 34%; anxiety: 73%) and severe challenging behaviour (26%). Hierarchical linear regression analysis was used to explore the extent to which anger ratings by the three groups of respondents were predicted by demographic factors, mental health measures and challenging behaviour measures. Older service users rated themselves as less angry and were also rated as less angry by home carers, but not by key-workers. More intellectually able service users were rated as more angry by both sets of carers, but not by the service users themselves. Significantly, mental health status (but not challenging behaviour) predicted service users' self-ratings of anger, whereas challenging behaviour (but not mental health status) predicted carers' ratings of service users' anger. Conclusions: Service users and their carers appear to use different information when rating the service users' anger. Service users' self-ratings reflect their internal emotional state and mental health, as reflected by their ratings of anxiety and depression, whereas staff rate service users' anger on the basis of overt behaviours, as measured by challenging behaviour scales.

Background: Studies focusing on pathways in the criminal justice system for individuals with intellectual disability are limited in that they only study individuals once they are involved in the system and do not consider the pathways into it. The purpose of this study is to examine predisposing factors that lead to various outcomes for individuals with intellectual disability when police are called to respond to their behavioural crises. Method: The current study examined the outcome of police response to 138 individuals with intellectual disability in crisis. Following police intervention, 15 individuals were arrested, 76 were taken to the emergency department and 47 received on-scene resolution. Comparisons between the three groups were conducted. Results: The three groups differed in terms of residence at the time of crisis, history of forensic involvement and type of crisis. Police intervention with adults with intellectual disability can happen for different reasons. Both individual and situational predictors explained this outcome.