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The increased life expectancy of adult individuals with developmental disabilities and the likelihood of parents having to continue caregiving into their old age is an emerging international issue which deserves investigation, especially concerning satisfaction with caregiving. Moreover, this needs to be assessed in different cultures in order to create a better understanding of how families are best supported in their lifelong caregiving. A sample of 408 parents was gathered in six cities across Iran with a son or daughter who had a confirmed developmental disability. Self-completed measures of satisfaction and stress were obtained along with demographic details of the child and family. Satisfaction with caring was generally positive and was similar for mothers and fathers, for older as well as for younger parents, and between different types of developmental disabilities. However, both personal and child satisfaction decreased when parents reported increased stress and when caring for teenage and adult offspring and those with behavior problems. Parents need to receive support to sustain their motivation and satisfaction with caregiving if their quality of life and that of their children with disabilities is to be maintained and enhanced across their lifespan.

People with intellectual disability (ID) are often socially excluded from their local communities. Special Olympics aims to promote inclusion through their participation in sport and more recently ...

Over five million athletes with intellectual disability (ID) currently participate in Special Olympics (SO) worldwide with the broader aim of promoting their inclusion in society. The public’s know...

Background People with intellectual disability (ID) are often socially isolated, and many experience stigma and discrimination. Increased contact with the general public is thought to overcome prejudices. This large‐scale international study had three main aims: to determine the type and frequency of contact that the general public has with people with ID; to identify the personal characteristics of those who have greater contact; and to examine the public's level of comfort at the prospect of having contact with people with ID. Method Self‐completed online questionnaires were administered to nationally representative panels of respondents in 17 countries; totally 24 504 persons. Multivariate analyses were used to identify respondents more likely to have had frequent personal contact with persons with ID from those with infrequent or no contact and those respondents who were most comfortable at meeting a person with ID. Results Internationally around one in four of the general population reports having frequent personal contact with people who have an ID although this varied from 7% in Japan to 46% in Panama. The principal forms of contact were through friendships, neighbours or extended family members. Over all countries, volunteering and engagement with Special Olympics were the two main predictors of frequent personal contact followed by employment in the education, health or social care field, being a parent of children under 18 years, playing sports and being employed. People who reported frequent personal contact were also more comfortable at meeting a person with ID. Conclusions This international dataset provides a baseline against which public contact can be compared across countries and changes monitored over time. The findings suggest ways in which greater contact can be promoted and making the public more comfortable at meeting people with ID.

Data were obtained on nearly 20,000 Irish children and adults living in various family care arrangements in 2007, 2012, and 2017. Over 10 years, the percentage increase in adult persons living with family carers was three times higher than the rise in the general population, with people aged 50 years and over having the highest proportional increase. Also a greater number of persons aged 40–49 group continued to live with both parents in 2017 (47%) compared to 2007 (33%). However, there was marked variation across the nine Community Health Organization areas in the proportions of adults living with family carers (from 49% to 62%). In the coming decades, increased provision will be required in both the quantum and type of supports provided to families so as to sustain their caring role but ensuring equity of provision nationally will be a major challenge.

In many countries, information on the prevalence of persistent speech and language disorders in early childhood is sparse due to the lack of nationally representative samples and longitudinal studies. Secondary analysis of data collected on over 7500 Irish children at ages 5 and 9 years, found that the prevalence of speech and language difficulties reported by the primary caregivers of Irish children decreased from one in six at age 5 to one in 12 at age 9. However, one in 20 children were reported to have difficulties at both ages. Regression analysis compared children with difficulties at both age 5 and age 9 to those who had been reported to have them at age 5 but no longer had such difficulties at age 9. Children with speech and language difficulties at both age 5 and age 9 were more likely to have two or more developmental impairments as well as current or past hearing impairments. Teachers and parents also reported a greater number of social-emotional difficulties. Family characteristics did not differ significantly across the two groupings. At best, up to one third of the children at ages 5 and 9 with speech and language difficulties had two or more contacts with a speech and language therapists in the preceding 12 month period. Increased support to these children, their parents and teachers would seem to be warranted.

Purpose The purpose of this paper is to argue that sports, play and games have contributed immensely to human evolution and development. Design/methodology/approach This paper is a commentary. Findings Often dismissed as past-times or amusements, a wealth of research has now evidenced the benefits of sports to children, youth, adults and senior citizens. Physical health, emotional well-being, friendships, learning/cognition and self-esteem are all positively impacted through participation in sports. Yet these benefits are rarely exploited for people with intellectual disabilities. A fundamental reason is that the culture of health and social services is the antithesis of that inherent in sports. Reconciliation is clearly desirable but it requires innovative and creative actions from both sectors. Originality/value Examples are given based on emerging experience and evidence but their implementation remains a daunting challenge with as yet few “fans” in support of harnessing the power of sport to improve the quality of life of people with intellectual disability.

Background Children with Autism Spectrum Disorders (ASD) experience higher levels of anxiety than their non-ASD peers. This can result in a poorer quality of life and significant mental health problems. To date, there is no readily available instrument for Iranian practitioners to assess anxiety in children with ASD. Method A translated version of a 24 item scale developed in the UK was tested with 254 parents drawn from different cities in Iran who rated their child's anxiety. In addition, a subsample of 58 of these children rated themselves. Results Analysis of parents' ratings identified three factors reflecting different forms of anxiety: Performance Anxiety, Uncertainty and Anxious Arousal. The fourth subscale from the original English version (Separation anxiety) was not replicated, with three of these items not loading on to any subscale and the remaining one loading on the Uncertainty subscale. The total scale score and three subscale scores had good internal consistency and test-retest reliability for both the parent and child ratings. However parents tended to underestimate their children's level of anxiety; particularly anxious arousal. Conclusions The study demonstrated the need to adapt scales to other cultures and to obtain children's perspectives as well as that of parents. The availability of a reliable assessment tool will help practitioners to identify and evaluate intervention strategies to ameliorate anxiety in children with ASD.

Background Public support for the rights of persons with intellectual disability (ID) and their acceptance in local communities has been rarely studied internationally and the variables associated with more positive attitudes remain to be confirmed. Aims To develop and test a model that brought together personal, organisational and national predictors related to public attitudes that have been previously identified in past research. Methods and procedures Self-completed, online surveys were undertaken with market research panels in 17 countries and in eight cities in the USA with a total of 36,508 respondents who were representative in terms of gender and age. Path analysis was used to explore the inter-relationships among the predictor, possible mediating and outcomes variables. Outcomes and results The resulting model was a good fit for the data. Support for the rights and community acceptance of people with ID was highest among university educated respondents, those who were comfortable at meeting people with ID and those living in countries with very high ratings on the Inequality Adjusted Human Development Index. Conclusions and implications The model could guide further research into public attitudes alongside the development of interventions to promote more positive attitudes. Further research into the validity of the model is proposed.

Parents of children with developmental disabilities face many challenges. Those who are less satisfied with the care-giving that their children receive may require extra support. This paper reports the development of a Parental Satisfaction with Caring for a child with Developmental Disability Index (PSCDDI), with items derived from literature reviews and pilot testing in Iran. The index was field tested with 256 parents caring for children with a diagnosis of intellectual disability, autism, or attention deficit hyperactivity disorder (ADHD), and who were attending centres in four locations across Iran. A factor analysis of responses to the self-completion questionnaire identified two main factors, i.e., personal satisfaction and satisfaction with the child, with six items for each factor. The two factors had good internal consistency and reasonable test-retest reliability. Binary logistic regressions identified significant predictors of personal satisfaction that supported the validity of the scale.: Clinicians and service providers could use this scale as part of their assessment strategy to identify parents who may require additional support, especially those with teenage female children, and those with a diagnosis of autism or behavior problems.

Background: International prevalence rates for intellectual disability vary widely with estimates often based on samples. In Ireland people with an intellectual disability are identified in the national census. Moreover, a national register of people receiving or requiring intellectual disability services is maintained and updated annually. Aims: The prevalence rates from the census were contrasted with those from the register along with variations in prevalence across the 26 counties of Ireland. Methods: 2011 and 2016 Census of Population prevalence per 1000 for children (aged 5–19 years) and adults (20 years and over) stratified by the 26 countries were contrasted with similar prevalence in the national register. Publically available data from the 2011 census in Northern Ireland and Scotland were obtained. Results: The Irish census identified nearly twice as many children and adults than were on the national register. Prevalence rates also varied across the 26 counties; more so on the register than the census. The Irish census had lower prevalence rates than Northern Ireland but higher than Scotland. Conclusions: Determining the prevalence of intellectual disability is challenging due to variations in terminology. A national register has advantages over reliance on census data for service planning.

In Europe, many people with intellectual disabilities continue to live in congregated settings. In 2012, Ireland formally introduced a resettlement policy with people moving to live in more personalised arrangements. This longitudinal country case-study aimed to monitor the implementation of this policy and the intra-country variations that arose using the records maintained in the National Intellectual Disability Database. Details of over 4,000 people living in congregated settings were examined in 2007 and again in 2012 and 2017. In addition, people who moved from such settings from 2007 onwards were tracked and the number of new admissions to them was estimated over the 10-year period. Overall there was nearly a 30% drop in the numbers of people in congregated settings but the reductions varied markedly across the country and by 2017 the disparity was greater than in 2007. Also by 2017 persons aged over 55 years were eight times more likely to be accommodated in congregated settings. The case-study illustrates the value of a longitudinal dataset for monitoring policy implementation across a diversity of provider organisations and administrative areas.

Objectives: Over the past three decades, major changes have taken place internationally in the type of residential accommodation provided for people with intellectual disabilities but these appear to be less evident in Northern Ireland.Method: A census was undertaken of all persons in any form of residential placement using a range of existing databases to identify the population, with a short questionnaire completed for each resident.Results: Around 440 persons lived in hospitals and 1,970 in some other form of provision but mostly in large congregated settings such as residential care homes and nursing homes. This was more marked in certain Health and Social Service Boards than in others. Most places are provided by the private sector although voluntary organisations and housing associations now manage around one-third of places. People living in hospitals reportedly had different characteristics to those in all other settings while those in nursing homes tended to require greater personal care. However the characteristics of people living in residential homes, supported living arrangements and village communities were broadly comparable. Around one in 10 persons were deemed to benefit from a move; mostly from residential homes to more independent living arrangements.Conclusions: Compared to Britain and the Republic of Ireland there is an under-provision of residential placements in Northern Ireland. To date, funding from outside of health and social services has been the main driver for the type of accommodation provided. The implications for future policy and provision are discussed.

The denial of citizenship to people with intellectual disabilities makes them among the most marginalised in every nation. Their exclusion comes from the persistent stigma associated with this disability, their assumed helplessness and the lack of self-advocacy. Their citizenship needs to become an international imperative, not least because more equal societies benefit everyone. It could be realised by ensuring that interventions to ameliorate the disability are available to infants and families and that all children have access to education and to productive employment in adulthood. More fundamentally it requires changed mindsets; new media images of persons with this disability and persistent challenges to discriminatory practices. Yet the most profound action is also the simplest: parents and professionals treating each person as though they are already a citizen.

The movement of people with intellectual disabilities into the community is increasingly endorsed by public policy. Whilst staff are critical to a successful transition to the community, there is only scattered research on their role in supporting people to move. In this study, 32 staff and the 16 people with intellectual disabilities they supported to move from congregated settings to group homes or personalized living arrangements in the community were interviewed on two occasions, before (time 1) and after (time 2) the move. In congregated settings, staff steered the move to community living, they helped them to settle in community group homes and supported them to increase control over their lives in personalized community arrangements, where they support became increasingly more personalized and geared towards community participation and development of social relationships. Implications for staff training are drawn.

The discomfort reported by the general public at the prospect of personal contact with marginalised groups is an expression of the stigma they experience. This has been widely studied in relation to ethnic minorities and immigrants but less so for persons with disabilities. A national survey with a representative sample of over 1100 Irish adults provided an opportunity to examine reported discomfort with persons who had different impairments, including mental health conditions, with four other minority groups. Moreover, the personal and situational variables associated with expressions of discomfort were identified. Respondents were most comfortable having persons with physical and sensorial disabilities living in their neighbourhood or in their workplace but less so for persons with intellectual disabilities and even less for people with mental health conditions. They were much less comfortable with the four other social groups: gay, lesbian or bisexual people; Eastern European migrant workers; black and ethnic minority groups and least of all, travellers. Moreover, a factor analysis confirmed that the scores given to the impaired groups were significantly correlated with each other but less so with the other four social groupings, although these were significantly inter-correlated among themselves. Respondents who were more comfortable with both sets of minority groups tended to have more social connections in their personal lives and to reside in towns or villages rather than cities. They also expressed more positive attitudes to the inclusion of persons with disabilities in Irish society. The gradient in levels of public discomfort across minority groups may provide a sensitive indicator of the differential stigma experienced by persons with impairments within societies but there remains the possibility that an alliance with other minority groups would also help to promote more positive attitudes and reduce their wider social exclusion.

Inclusive rather than segregated schooling has been advocated in several significant international declarations during the past two decades. Even so children with significant intellectual disabilities are at greater risk of being excluded from mainstream education, unless particular efforts are made to support them in such settings. These children and young people are more likely to be educated in special schools or in special classes within mainstream schools. In the decade from 2003 to 2013, the Republic of Ireland enacted legislation and provided additional financial resources for pupils with special educational needs, although these were more constrained during the financial crisis that Ireland experienced from 2008 onwards. A national database, updated annually, is maintained of children receiving services from specialist intellectual disability services and this enabled comparisons to be made for the enrolments of over 8000 children aged 4–19 in mainstream and special schools following the i...

Suitable screening instruments for the early diagnosis of autism are not readily available for use with preschoolers in non-Western countries. This study evaluated two tools: M-CHAT which is widely used internationally and one developed in Iran called Hiva. A population sample was recruited of nearly 3000 preschoolers in one Iranian city. Parents self-completed the two tools and children who screened positive were invited for a follow-up interview followed by a diagnostic assessment. The Hiva scale proved to be more efficacious in identifying children with ASD and the resulting prevalence rate was higher than that previously reported for Iranian 5 year olds. The study confirms the need to attune screening tools to the cultural contexts in which they are used.

Purpose – The purpose of this paper is to provide a commentary on “Adults with learning disabilities known to local authorities in Scotland: a national dataset” by Claire Stuart and colleagues. Design/methodology/approach – Drawing on experiences with the National Intellectual Disability Database in Ireland, the authors identify the key elements to be addressed such as the uses to which information from the database will be put; the definition of intellectual disability for inclusion of individuals; defining the information to be gathered; the systems for gathering information; checking and auditing the information that is collected, and the types of reports emerging from the analyses. Findings – A national database of persons with an intellectual disability is at least desirable – if not essential – to the delivery of equitable and effective service supports. The advent of computerised data management tools makes this a realistic option in most European countries although debates continue around the protection of personal data and the costs involved in establishing and maintaining dedicated databases. Originality/value – National data sets on intellectual disability can make a significant contribution to equitable and effective service planning. However, major challenges need to be overcome so that the information collected is reliable and valid.

Friendship plays an important role in the development of identity in adolescence. Amongst young people who have experienced an acquired brain injury, friendship can be seen as a key site in the reconstruction of identity. This chapter draws on research conducted with nine young people, all of whom had experienced a life-threatening brain injury. The research employed a creative approach to data collection, namely using collage to mediate a narrative method. The chapter draws on findings from the study in relation to the interplay between friendship, interpersonal relationships with peers and the redrawing of identity amongst participants. Excerpts from collages and narratives are used to illustrate the chapter. Changes in young peoples’ social world are highlighted in the wake of a diminished social circle. How young people internalise perceived negative interactions in terms of their redrawn sense of self is described.

A natural experiment contrasted the social relationships of people with intellectual disabilities ( n = 110) before and after they moved from congregated settings to either personalized accommodation or group homes. Contrasts could also be drawn with individuals who had enduring mental health problems ( n = 46) and who experienced similar moves. Face-to-face interviews were conducted in each person’s residence on two occasions approximately 24 months apart. Multivariate statistical analyses were used to determine significant effects. Greater proportions of people living in personalized settings scored higher on the five chosen indicators of social relationships than did persons living in grouped accommodation. However, multivariate statistical analyses identified that only one in five persons increased their social relationships as a result of changes in their accommodation, particularly persons with an intellectual disability and high support needs. These findings reinforce the extent of social isolation experienced by people with disabilities and mental health problems that changes in their accommodation only partially counter.

Background: The lack of access to good quality palliative care for people with intellectual disabilities is highlighted in the international literature. In response, more partnership practice in end-of-life care is proposed. Aim: This study aimed to develop a best practice model to guide and promote partnership practice between specialist palliative care and intellectual disability services. Design: A mixed methods research design involving two phases was used, underpinned by a conceptual model for partnership practice. Setting/participants: Phase 1 involved scoping end-of-life care to people with intellectual disability, based on self-completed questionnaires. In all, 47 of 66 (71.2%) services responded. In Phase 2, semi-structured interviews were undertaken with a purposive sample recruited of 30 health and social care professionals working in intellectual disability and palliative care services, who had provided palliative care to someone with intellectual disability. For both phases, data were collected from primary and secondary care in one region of the United Kingdom. Results: In Phase 1, examples of good practice were apparent. However, partnership practice was infrequent and unmet educational needs were identified. Four themes emerged from the interviews in Phase 2: challenges and issues in end-of-life care, sharing and learning, supporting and empowering and partnership in practice. Conclusion: Joint working and learning between intellectual disability and specialist palliative care were seen as key and fundamental. A framework for partnership practice between both services has been developed which could have international applicability and should be explored with other services in end-of-life care.

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. Accessible Abstract Why we did the research In many countries, people with intellectual disability have difficulties doing things other people without disabilities do, for example to study, to get a job or to live independently. They also find that their rights are not respected under the Convention on the Rights of Persons with Disabilities (the Convention). We did this study to Learn what are the main issues for adults with intellectual disability in Ireland. Do research with people with intellectual disability. How we did the research People with intellectual disability and their supporters worked with university researchers to plan and do the research. We met with people in groups and 168 people told us about things important to them. What we found out We found that there were very important things that people talked about in the groups. We chose the most important: living options, employment, relationships, rights, leisure, money, self-advocacy, and communication. We talk about the Convention and why things people told us are important for services.

Background The provision of residential services for adults with intellectual disability in developing countries has not been widely researched. This study presents a survey of such facilities in a South African context.Method Managers of 37 nongovernmental facilities in the Western Cape Province of South Africa responded to a survey about their facilities and their residents.Results Facilities struggled with accessing adequate funding, and tended to focus more on their protective role than on the promotion of human rights. Residents were generally isolated from the community, and did not receive vocational and life skills development.Conclusion Residents in facilities are far from realising their human rights as delineated in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Although the need remains for such facilities and the protective function that they offer, services in low- to middle-income countries should still be evaluated and developed in line with huma...

Many people with learning disabilities aspire to having friends and to formingclose relationships. Often the latter are discouraged, but for those who enter intosuch a relationship little is known about the meaning and value it brings to theirlives. The aim of this study was to gain an insight into the close relationships ofeight couples with learning disabilities using a combination of dyadic and oneto-one interviews. Data collection and analysis was informed and guided by thecore principles of grounded theory. Five significant types of benefits were identifiedfrom having close personal relationships, namely: comradeship, a sense ofcontentment, availability of mutual support, coping with the ups and downs ofrelationships, and a continuing commitment. Service providers could do more tofacilitate the formation of close meaningful relationships, and strategies fordoing this need to be identified and evaluated.

Accessible summary A national survey of over 1000 people took place in Ireland in 2001, 2006 and again in 2011. In 2011, half the people in the survey thought that people with intellectual disability or autism had the right to sexual relationships. In 2011, one-third agreed that people with intellectual disability or autism should have children if they wished. People's attitudes towards people with intellectual disabilities were similar to their attitudes towards people with mental illness. More people in the survey agreed that people with physical or sensory disabilities had the right to have sexual relationships and have children compared with people with intellectual disability. People in the survey were more likely to agree with the right to sexual relationships for people with intellectual disabilities if they: ○ lived outside of Dublin; ○ were single; ○ had more people in their own social networks; ○ were comfortable living near people with intellectual disability. People need to know more about what people with intellectual disabilities hope for from relationships. People need to know more about the supports that are in place: ○ to help people with intellectual disabilities make choices about sexual relationships ○ to protect people with intellectual disabilities against abuse. Summary Limited progress has been made in supporting people with intellectual disabilities to form intimate relationships. A critical factor that has been rarely researched is the attitude of the general public which likely has a significant influence on public policy on this issue. Unique to Ireland, are the five-yearly national surveys commissioned by the National Disability Authority that recruit representative samples of over 1000 adult persons. On three occasions in the past 10 years, respondents were asked to rate their agreement that people with various disabilities and with mental health difficulties had the right to fulfilment through sexual relationships and to have children if they wished. Secondary analysis of the 2011 data set identified those persons who were more likely to be in agreement and also the concerns raised by respondents. The findings are discussed in relation to priorities for future research and actions needed to reduce the stigma associated with disability or mental ill health.

Background Specialist short break services aim to provide enhanced support to family carers as a means of preventing children whose behaviours severely challenge from being placed in full-time residential care. To date, there is limited evidence as to the functioningand effectiveness of such services. Methods In all, 17 children were selected at random from the 123 who were currently receiving services or had done so in the past 2 years from three specialist short break and community support services. For each child, interviews were conducted with a parent, the child’s key worker within the service and the professional (mostly social workers) who had referred families to the services.Results Five core themes captured the informants’ common experiences: the complexities underlying the provision of services; the negotiations required to implement, maintain and adjust service packages; the relationships forged by the services; and the benefits they brought to children and families plus concerns about the future also featured.Conclusions Specialist short break services can make a vital contribution to retaining children within their families, but under some important conditions which this study has identified: notably, the management of complexity, the formation of trusted relationships andcreation of tangible benefits for the family and for the child.

A natural experiment contrasted the self-rated well-being of people with intellectual disabilities ( n = 75) and those with enduring mental health problems ( n = 44) after they moved to new accommodation and support options, while others remained in congregated settings or living in the family home. Most support staff also provided well-being ratings. In personalized arrangements, personal well-being was significantly higher than in congregated settings; particularly for people with intellectual disability who had higher support needs compared to people with mental health problems. Moving to a group home also brought some improvement in the well-being ratings of people with intellectual disability but only for those with higher support needs. Such moves seemed to lead to a decline in well-being for those with mental health problems. There were marked discrepancies between ratings given by the person with those of staff. The well-being measure shows promise for use in further comparative and longitudinal studies.

Early identification and diagnosis of children with autism spectrum disorder is recommended, but this is difficult to achieve in less developed countries due to a lack of suitable tools and personnel. This two-phase study, undertaken in Iran, aimed to develop culturally appropriate and feasible means for screening pre-school children for autism spectrum disorder (ASD).The first phase involved information and training events held in four cities to alert parents and to recruit and train professionals to undertake screenings and diagnostic assessments. In phase 2, a screening tool developed in Iran was administered to over 20 000 preschool children with the Iranian version of the GARS2 scale used to assess the probability of the child having ASD.Over 250 professionals were trained and assessed as competent screeners of whom a further 67 were trained and accredited to use GARS2. They included postgraduate students and practitioners from a range of disciplines. In all, 1579 children screened positive; however, only 130 parents brought their child for the diagnostic assessment of whom 22% had a high probability of having ASD.The feasibility of undertaking a screening programme for ASD with Iranian preschoolers has been demonstrated although further research is needed to refine the screening and diagnostic tools, monitor assessors and promote greater engagement of families. Implications for Rehabilitation Sizeable numbers of postgraduate students and practitioners were recruited to assist with the screening and assessments of preschoolers. The uptake of screening was highest among parents of four and five years olds but much less so for younger children and in bringing children for further assessments. Further research is needed into the development of more suitable screening and diagnostic tools for ASD with Iranian preschoolers and the training of assessors in their use.

Background To date, most research with families who have a child with autism spectrum disorder (ASD) has been undertaken in English-speaking countries. Increased levels of stress allied with poorer health have been commonly reported for mothers, with less attention paid to fathers. This study aimed to document the personal impact on Iranian mothers and fathers and identify the correlates of increased stress and poorer emotionalwell-being.Method In all, 103 parents (58 mothers and 45 fathers) from 74 families who had a child with ASD volunteered to take part in the study. Each participant completed through interview, standardised rating scales of parenting stress, emotional wellbeing and family functioning as well as rating their child’s autistic symptoms, including stereotypedbehaviours.Results Mothers had significantly higher scores than fathers on measures of stress and emotional well-being. Although these variables were highly correlated, binary logistic regression identified that the poorer health was also associated with lower educational levels of the parents, more behavioural problems with the child and fewer autistic symptoms overall. A similar regression analysis of stress scores identified no gender differences but found that lower stress was associated with mothers and fathers who were joint caregivers and when the family lived with relatives.Conclusions Iranian parents experience broadly similar responses to parents in other countries, which suggests that the impact of ASD outweighs any cultural differences that might otherwise be present in parental responses to caring for children. In common with families internationally, these parents are likely to benefit from opportunities to become better informed about ASD and the management of their child at home allied with increasedsupport from families and friends.

This article examines the Special Olympics' Youth Unified Sports programme across five countries within its Europe/Eurasia region. It focuses upon the process by which impact is achieved, led for the most part by coaches involved in preparing participants for competition through training. This is realized through the creation of sports teams, which in the case of this research means association football and basketball teams, in which athletes (young people with intellectual disabilities, ID) are selected alongside partners (contemporaries without an ID) to form coherent units that then compete against other such teams locally, nationally and, occasionally, internationally. The results of this investigation reveal the positive impact, upon integration and inclusion, for athletes offered by the Unified Sports programme and point to the powerful outcomes for a host of stakeholders, ranging from Special Olympics at an organizational level, relatives of participants, partners and coaches as well as the athlete...

Internationally, increasing numbers of children are being diagnosed with an autism spectrum disorder (ASD), but there is a dearth of studies outside more affluent countries as to parents’ understanding of this condition and the support they receive. Forty-three parents were recruited from schools and clinics in Tehran and interviewed individually using a structured interview schedule. Thematic content analyses identified a lack of parental understanding about autism and its causes, along with parents’ reactions to the diagnostic process and the dearth of information available to them. The majority of parents were dissatisfied with the professional assistance provided for their children and many lacked informal support from their families. The provision of accurate information through informal parent-to-parent support seems to be the most feasible means of assisting Iranian families to adjust to having a child with ASD within the family.

Children with intellectual disabilities are more likely than non-disabled children to liveaway from their families. Internationally, the aspiration is for them to live at home or inalternative family placements. This study uses national data on over 700 children fromthe Republic of Ireland to monitor their living arrangements over a ten-year period.In that time, the numbers of children in care had fallen significantly and especially forthose in residential settings aged ten years and over. Nonetheless, proportionatelymore children with intellectual disability of all ages moved away from their families, especially those aged ten to nineteen years. However, compared to non-disabled children,fewer were placed in foster-care, although the extent of this varied across the localhealth areas. Over the ten-year period, only small proportions of children returned totheir families or moved from residential to foster-care. These findings are combinedwith those from international studies to identify changes in service provision andsocial work. A particular challenge is the promotion of cross-sector working betweenmainstream child and family services with specialist disability services.

Background Few studies have compared overweight and obesity in intellectually disabled (ID) and nonintellectually disabled (N-ID) children. This research compared the prevalence of overweight and obesity between a sample of 218 ID and 229 N-ID school pupils in Northern Ireland (NI). Comparison of the physical activity and dietary behaviour of the two groups of school pupils were also undertaken.Methods Each pupil completed (assisted if required) a food intake and physical activity questionnaire. Following this body mass index (BMI) and waist circumference were measured and recorded.Results Significantly more ID pupils (72, 33%) were overweight/obese compared with 55 (24%) of the N-ID pupils in accordance with their BMI. ID pupils also had significantly higher waist circumferences. Over a quarter of foods consumed by the pupils were fatty and sugary foods and close to 30% of these foods were eaten by the ID children. Pupils spent most of their time engaging in low levels of activity such as reading, watching TV, on gamesconsoles and listening to music. Pupils with an ID spent fewer hours on moderate and high levels of activities compared with those children with N-ID.Conclusions Results of this study found higher levels of overweight and obesity in this sample than in international published research. Additionally significantly higher numbers of ID pupils were overweight and obese indicating the need for future research and public health to focus on this issue.

Background: Planning for the future care of adults with an intellectual disability after the main family carer ceases their care, continues to be a sensitive and difficult time posing challenges for service providers internationally. Limited research has been undertaken on this topic because until recently, people with intellectual disability usually pre-deceased their parents. This study examined ageing carers’ preferences for future care and the support systems required to make such future plans. Methods: The study was conducted in one region of the United Kingdom with a high proportion of family carers. A mixed methods design was employed. In Stage 1, a structured questionnaire was used to collate information on the health, caregiving demands and future planning preferences of 112 parent and sibling carers; aged 60–94 years. In Stage 2, 19 in-depth semistructured interviews were undertaken with a sample of carers to explore a range of issues around future planning. Findings: Over half of the carers were lone carers, mainly female, with many reporting a wide range of health problems. A third of these carers reported that their caregiving resulted in high levels of anxiety. The main preference of the carers was for the person to remain in the family home, with either the family and/or paid staff to support them. A minority of parent carers preferred the person to move into the home of a sibling, although some favoured the person moving to a residential facility with other people with intellectual disabilities. The majority of carers did not want their relative to move into an older people’s residential/nursing facility. In the qualitative data, four main themes were identified around future planning: unremitting apprehension, the extent of planning, obstacles encountered and solutions for future planning. Avoidance, lack of guidance and a lack of appropriate residential provision were cited as obstacles to making future plans compounded by the emotional upset experienced by carers in thinking about the future. Conclusion: Findings of this study clearly identify the emotional, informational and practical supports required by these ageing family carers. These findings have national and international relevance in influencing how governments and service providers support parent and sibling carers to proactively plan for the future, and in the development of both in-home and out-of-home options when a family carer can no longer provide care. This is more urgent than ever given the growing numbers of older persons with intellectual disabilities in future decades.

Background Small-scale community accommodation is the preferred alternative internationally to the institutional and congregated services that previously dominated residential care for persons with intellectual disability. The strategies required for changing to new service models are not well researched. Method The National Intellectual Disability Database in Ireland provided the data to explore the changes in provision that occurred over a 10-year period and the extent of the intra-country variation across eight administrative areas for health services. Data were extracted for 2 years, 1999 and 2009, for over 7000 adult persons resident in either congregated or community-based accommodation. Comparative indicators were calculated for the eight areas as well as nationally. In addition, over 4000 persons living in congregated settings were tracked over the 10 years to ascertain relocations as well as gathering information on the numbers of people newly admitted to each type of accommodation. Results Marked variations across the eight areas were found in the overall numbers of people in residential accommodation, the proportion of persons living in congregated settings and the extent of changes in the numbers of people in each type of accommodation. Moreover, fewer than 15% of people had relocated nationally from congregated settings over the 10-year period and the number of new admissions to this form of provision remained high in certain areas. Conclusions The implementation of new forms of provision was not uniform across Ireland and possible reasons are proposed. Among the wider lessons internationally is the need for robust systems to monitor service provision nationally and locally if equity of access is to be achieved.

Children with autism spectrum disorders (ASDs) are not easily included in mainstream youth activities provided by the community and voluntary sector (CVS) such as scouts, sports organisations and youth clubs. Two studies were undertaken. First, a survey of over 200 personnel from CVS groups to ascertain their previous experience of these children and reactions to their enrolment. Second, in light of the findings, a short, two-hour introductory training course on ASD targeted at youth leaders was devised and evaluated with nearly 400 participants. Most participants reported changes in their attitudes and perceptions as well as citing a range of information they had gained from attending. Further research is needed into the reasons why CVS groups are disinclined to enrol children with ASD and in targeting awareness raising and training opportunities more specifically within this sector.

Background Although the promotion of social inclusion through sports has received increased attention with other disadvantaged groups, this is not the case for children and adults with intellectual disability who experience marked social isolation. The study evaluated the outcomes from one sports programme with particular reference to the processes that were perceived to enhance social inclusion. Method The Youth Unified Sports programme of Special Olympics combines players with intellectual disabilities (called athletes) and those without intellectual disabilities (called partners) of similar skill level in the same sports teams for training and competition. Alongside the development of sporting skills, the programme offers athletes a platform to socialise with peers and to take part in the life of their community. Unified football and basketball teams from five countries – Germany, Hungary, Poland, Serbia and Ukraine – participated. Individual and group interviews were held with athletes, partners, coaches, parents and community leaders: totalling around 40 informants per country. Results Qualitative data analysis identified four thematic processes that were perceived by informants across all countries and the two sports to facilitate social inclusion of athletes. These were: (1) the personal development of athletes and partners; (2) the creation of inclusive and equal bonds; (3) the promotion of positive perceptions of athletes; and (4) building alliances within local communities. Conclusions Unified Sports does provide a vehicle for promoting the social inclusion of people with intellectual disabilities that is theoretically credible in terms of social capital scholarship and which contains lessons for advancing social inclusion in other contexts. Nonetheless, certain limitations are identified that require further consideration to enhance athletes' social inclusion in the wider community.

Disabled children are among the most marginalised in our society. Their influence has been negligible on policies and service practices that directly affect their lives. Empirical research using innovative methodologies can at least enable their voices to be heard. Based on the contributions of leading researchers and practitioners to a seminar series in the UK, a schema to guide future research was developed that aims to reduce the fragmented approach that exists at present. It considers both the context in which research is conducted and the nature of the investigations. The schema places particular emphasis on research influencing policy and practice.

Parents of children with Autism Spectrum Disorders (ASD) generally experience high levels of stress and report poorer emotional well-being and family functioning compared to parents of children with other disabilities. They also tend to rely on emotional rather than problem-focused coping strategies. Seven group-based sessions were offered to two groups of parents of children with ASD in Iran (37 in all). In addition to providing information about ASD emphasis was placed on families sharing their experiences and learning from one another. A pre-post, cross-over design was used to evaluate the specific impact of the course. The changes found among the parents in the first group were replicated with the second group. Moreover the changes were sustained up to 15 weeks after the course ended. Although there were variations across the parents, in general they reported feeling less stress, had better emotional wellbeing and family functioning and made more use of problem-focused coping strategies. The changes were attributed mainly to an increase in the informal supports among the parents and their feelings of empowerment. A resource pack has been developed to enable the group sessions to be easily repeated and for facilitators to be trained in its use.

PurposeThe move from congregated living arrangements to more homely, community‐based accommodation is a policy objective in many developed countries but its implementation is rarely monitored. This paper aims to address this issue.Design/methodology/approachThe National Intellectual Disability Database in Ireland provided the data to explore the changes in provision that occurred from 1999 to 2009 for nearly 8,000 adults resident in either congregated or community‐based accommodation.FindingsOver the ten years, there was a marked rise in the numbers living in community group homes and by 2009 just under 50 per cent of persons resided in community settings. Although there was a reduction in the number of places in congregated options over the decade, this was not uniform in that increased numbers of persons were living in new forms of congregated provision designated as specialist units. Moreover, the estimated annual turnover of 2.4 per cent vacancies per annum meant that nearly half of the new admissions were to congregated settings. Over the ten years, a few people moved to a different type of accommodation although more people moved from congregated to community settings than vice versa. A few moved to more independent living arrangements. Despite unprecedented increased investment in services in this period, on average only 70 new places were created per annum – a 1 per cent increase on total places.Research limitations/implicationsOutmoded models of residential provision are likely to persist unless there is sustained investment in new forms of provision largely through a planned transfer of resources.Originality/valueThis national study illustrates how policy changes could be monitored in other countries.

Life-long learning is essential for persons with intellectual disabilities wishing to enter the labour market. This paper describes an integrated curriculum provided by a leading agency in Northern Ireland that provides ‘real work’ training to students aged 16 to 40 years. It has three, inter-linking components: 1) training courses leading to accredited vocational awards; 2) realistic work experience in social enterprises managed by the agency and 3) supported work in mainstream employment with on-the-job training from job coaches. The critical features of the model were validated through interviews with a range of stakeholders including trainees, family carers and disability specialists.

Parenting a child with severely challenging behaviours is very stressful and threatens family well-being. Short break (respite) services are commonly provided as a support to families but surprisingly little attention has been paid to adapting these services when children and families have complex needs. This article describes the model of service that has evolved in three separate locations which successfully provides overnight short breaks and/or community-based support to families. The model was documented and validated through individual and group interviews with a range of stakeholders – around 30 in all. The services are embedded within multi-agency partnerships and four particular features are highlighted: the values and ethos underpinning the service; the service procedures; the organization of short breaks; and the role of an intensive support/outreach service. The rationale for complex service models is discussed and the key lessons for replicating this model are reviewed.

The Academy, an arm of the International Association for the Scientific Study of Intellectual Disabilities, was formed in 2006 in order to promote clinical and academic skills in low- and middle-income countries (LAMICs) and to carry out educational activities within international events. This article describes the global context of knowledge dissemination and examples of workshops and courses led by Academy members. Discussed are reflections on the important lessons learnt from the Academy experiences to date and recommendations on better coordinating and delivering Academy-sponsored trainings and consultations in LAMICs.