Search

This article provides insights from an empirical study on the meaning of social inclusion for Finnish athletes with intellectual disabilities (ID) who participate in Special Olympics (SO). A further objective was to explore the athletes’ perceptions of the role SO has played in their lives regarding their personal experiences of social inclusion. Data were transcripts of five focus group interviews carried out with a total of 31 participants during the last SO World Winter Games in 2017. The content was analysed with the aim of identifying the main themes in the athletes’ conversations about social inclusion. Three main themes were identified: inclusion as a contrast to past discrimination; inclusion as receiving and providing assistance; and inclusion as participation in teamwork. The results indicate that SO and arguably sport more generally can assist people with ID in moving forward on a path from being excluded toward social inclusion. peerReviewed

Family-centred interventions have long been advocated in paediatric practice and in public health, but their implementation is rarer with children experiencing developmental disabilities. Moreover, the uptake is lower in families from more socially deprived backgrounds. Yet there is robust evidence that such interventions bring benefits to the family caregivers as well as to the affected children. The present study emerged from a support service that had been located in a rural county in Ireland in which nearly 100 families of children with intellectual and developmental disabilities had participated. Using a qualitative research methodology, interviews were conducted with 16 parents who had taken part in the service with the aim of gaining insights into the ways a family-centred service had been of value to them. The themes identified in their responses were validated in two ways. All parents were given the opportunity to provide their perceptions using a self-completion questionnaire, and nearly 50% responded. In addition, seven health and social care staff who had referred families to the project were asked their views through personal interviews. The core theme to emerge was the focus placed on family engagement by the service, with four subthemes emerging: parental confidence boosted; children developed; community connections were made; and supportive staff. These insights should help existing health and social care services to become more family-centred and inform the development of new support services in response to the high levels of unmet needs among marginalized families in even the most affluent countries.

People with intellectual disability mostly require life-long care that in many countries is provided by parents. The increased risk of marital breakdown in these families has been a focus of attent...

A crucial of aim of Special Olympics (SO) is the promotion of social inclusion for persons with intellectual disability (ID). A transnational study had devised an easy-to-use, instrument to obtain ...

Purpose This paper aims to design and evaluate an innovative community-based service for adults with autism in a rural region of Northern Ireland. The goal was to reduce their social isolation through gaining social skills and building social networks. Design/methodology/approach Over three years, 54 persons with a median age of 21 years received 12 months of one-to-one, personalised support and opportunities to participate in peer groups and social activities which are detailed in the paper. Quantitative and qualitative information about the impact of the service was obtained from its users, their relatives, as well as service personnel. Findings Service users rated themselves to have changed in more ways than did their relatives and staff although there was a consensus that the changes were most marked in terms of spending more time out of the house, engaging in more community activities, being more independent and increased confidence. The main benefits they perceived from participation in the project were socialising, new experiences and learning new things. Research limitations/implications As with many service projects, a longer term follow-up of service users was not possible due to resource constraints. Practical implications The service could be replicated with suitable staff although current constraints on social care budgets have limited its expansion to more users and extension to other areas in Northern Ireland. Social implications Reducing the social isolation of adult persons with autism spectrum disorders needs to be personalised to the person, their living circumstances and the community in which they live. Family carers also stand to gain from community support services. Originality/value This low level, low cost service was implemented in a predominantly rural area with a majority of users from socially deprived areas.

The assessment instruments for diagnosing children with autism spectrum disorder have been developed mostly in affluent, English-speaking countries. Among the most popular has been the Autism Diagnostic Interview–Revised. This article reports its use in Iran with the dual aims of confirming the factor structure of the revised Autism Diagnostic Interview when used to assess Iranian children for autism spectrum disorder and to identify the algorithms that best distinguish children with autism spectrum disorder from those who are developing typically and from those with intellectual disability. Study 1 contrasted the Autism Diagnostic Interview–Revised ratings given to 420 children with autism spectrum disorder from those of 110 typically developing children. In Study 2, the Autism Diagnostic Interview–Revised ratings of 720 children with autism spectrum disorder were compared with those of 172 children with intellectual disability, and from those with intellectual disability. Exploratory factor analyses identified one main factor that merged the social interaction and communication items of Autism Diagnostic Interview–Revised, but replicated the repetitive behaviour and verbal factors. Receiver operating characteristic analyses identified suitable cut-off points on the revised factor scores. Also, the age at which symptoms became apparent increased the sensitivity of the algorithm in distinguishing children with autism spectrum disorder from those with intellectual disability. These findings are in line with the Diagnostic and Statistical Manual of Mental Disorders (5th ed.), recommendations and suggest a commonality in autism spectrum disorder presentations across different nations. The methodology used in this research could guide similar adaptations of assessment instruments for use in other cultures. Lay abstract The diagnosis of autism spectrum disorder is a challenging task. Most of the current assessment scales have been developed in the West. The present study examines the applicability of one of the most used scales (the Autism Diagnostic Interview–Revised) in a Middle-Eastern culture. Two studies were undertaken. In the first, the Autism Diagnostic Interview–Revised ratings given to 420 children with autism spectrum disorder, aged 4–11 years, and 110 typically developing children were contrasted. In Study 2, the Autism Diagnostic Interview–Revised ratings of 720 children with autism spectrum disorder were compared with those of 172 children with intellectual disabilities to find out whether the Autism Diagnostic Interview–Revised scale would discriminate between these two types of developmental disabilities. The studies confirmed the acceptability of the scale to Iranian parents and assessors. However, the summary scores used to determine whether a child was likely to have autism spectrum disorder were recalculated on the two domains of social communication and repetitive behaviours, which were identified in the statistical analyses that are recommended for the evaluation of assessment scales. Thus the translated scale with the modified domain scoring proved very suitable for identifying Iranian children with autism spectrum disorder. Having a common tool such as Autism Diagnostic Interview–Revised will strengthen the opportunities to undertake cross-cultural research into the impact of autism spectrum disorder on the child and families.

Background The United States has yet to ratify the UN Convention on the Rights of Persons with Disabilities. The extent of public support in the United States for the rights of persons with intellectual disability is not known. Methods Online public opinion polls were conducted nationally and in eight selected cities in 2017 and repeated in 2018 with 26,876 respondents in total. Results Support for rights was high: notably in accessing healthcare, schooling, playing sports and getting married. However, less support was evident for the rights of people who were perceived as less capable. Respondents with prior frequent personal contact and who had an engagement with Special Olympics were those most likely to support the rights and capabilities of persons with intellectual disability. Conclusions Public support for the ratification of the UN Convention seems likely. Further longitudinal research could identify successful strategies for implementing the rights of disabled persons locally and nationally.

Since 2006, three nationally representative surveys in Ireland have assessed public agreement to three rights inherent in the UNCRPD (United Nations Convention on the Rights of Persons with Disabilities): attendance at ordinary schools, to have sexual fulfilment and to have children. Three questions are posed in this paper: do the Irish public perceive people with different impairments as having the same rights? Are they more supportive of certain rights than others? How has public perceptions changed in 2017? The Irish public are more sympathetic to the rights of persons with physical and sensorial disabilities than to those with cognitive or emotional impairments. They are more supportive of people having sexual fulfilment than they are of school attendance. By 2017 they were more supportive of these rights and especially those of people with mental health difficulties. Monitoring public perceptions nationally would help to inform the advocacy and awareness raising efforts needed to make the public allies in achieving the Convention's aims.

An annual school census is held in the four countries of the UK in which pupils with ASD are identified. This longitudinal study of the total UK school population compares increases in prevalence rates for pupils with ASD over a nine-year period from 2010/11. Northern Ireland had the highest prevalence throughout, reaching 3.20% by 2018/19 compared to 1.92% in Wales. The prevalence rates were higher in secondary than in primary schools. The increases in prevalence and intra-country variations may be linked to a greater appreciation of ASD occurring alongside other developmental difficulties. Greater reliance on school rather than statutory assessments may also contribute to increases in pupils with ASD. More in-depth research is needed to establish the reason for the variations across years and countries.

Screening tools for the early identification of developmental disabilities are strongly advised, yet culturally valid tools are not readily available for use in low- and middle-income countries. The present study describes the context and the processes used to develop a suitable screening procedure for use in the Kurdistan region of Iraq. This was based on an autism rating scale—GARS-3—developed in the USA for use primarily with children’s parents. It was administered to three groups of children: those with a pre-existing diagnosis of ASD; those with a confirmed diagnosis of a developmental disability; and those who were typically developing—735 participants in all. The 10 items from the 58 items in the full GARS-3 scale that best discriminated the three groups of children were identified. Subsequent analysis confirmed that the ten-item summary scores had reasonable internal reliabilities, with a good specificity and sensitivity in distinguishing children with ASD from those that were typically developing but less so for children with other developmental disabilities. The study confirms the universality of autism symptoms but also the different emphasis Kurdish parents may place on them. Nevertheless, screening procedures need to be developed in the context of support services that can undertake follow-up diagnostic assessments and provide suitable interventions for use by parents to promote their child’s development. The study provides an example of how this can be possible in low- and middle-income countries.

Children with disabilities are at greater risk of social exclusion. In part, this results from the negative perceptions of disability held by their peers. An innovative, school-based project used creative music-making sessions facilitated by young disabled musicians to nurture more positive attitudes among children aged 9 years in four schools, with two classes from each. In all, around 200 pupils were involved in weekly sessions totalling 16 h. Their attitudes to disability were assessed before and after participating in the project, along with the reactions of parents and teachers. Pupils were significantly more disposed to interacting with children with disabilities and to persons with disabilities more generally as well as to having a teacher with a disability. Parents and teachers confirmed the pupils’ enthusiasm for the project and the impact it had on them. A core driver for change appeared to be sharing enjoyable musical activities with competent musicians who had disabilities. Further research should explore the potential of mentoring by disabled persons in other arts activities and sports to provide further validation of this approach.

Previous studies suggest that family members of people with intellectual disabilities prefer them to move to supervised living arrangements such as group homes. In Ireland, personalised arrangements are emerging, but families have had little exposure to this option. In this qualitative study, we explored the perspectives of family members following their relative’s move to personalised support options, mostly from group homes. Semi-structured interviews were conducted in 2011 with a family member of 17 people who had previously moved, with follow-up interviews held with 12 of them up to 18 months later. Thematic analysis on interview transcripts was conducted by three researchers. The family members spoke favourably of the new arrangements. A core theme of enabled independence emerged with subthemes of greater self-reliance in personal care, increased confidence, more social inclusion and gains for relatives. Reservations focussed on the need for more support hours, managing risk and loneliness.

Sport can be a means for promoting social inclusion but to date, the perspectives of participants have been rarely sought. Focus groups interviews were held with 6 Special Olympic, Unified Sports teams in the United States as well as one each in Germany and India. In all, 49 athletes with intellectual disability and 39 team-mates without disability participated. From a thematic content analysis, a core concept of togetherness emerged, with five subthemes of equality, friendships, participation, connections, and assistance. Four main feelings were associated with togetherness: happy, relaxed, confident, and cared for. The players gave specific examples of how these outcomes were realised in sport and community settings. Their insights could guide future attempts to promote social inclusion in sports and the wider community.

The rise in prevalence rates of children with ASD is well documented internationally. In the United Kingdom, Northern Ireland has consistently higher rates although the reasons for this are not cle...

Including people with intellectual disability in sport is a challenge for coaches and particularly the inclusion of these players alongside non-disabled peers. Drawing initially on the experiences ...

Background Information about obesity among people with intellectual disability comes mostly from small-scale, national samples in high-income countries. There are limited data from transnational studies. Method BMI scores had been obtained for over 25,000 youth and adults with intellectual disabilities drawn from 60 European and Eurasian countries. Their height and weight had been measured using standardized procedures when they attended Special Olympics Healthy Athletes events. Results Binary logistic regression identified higher levels of obesity for athletes living in high-income countries, and for adult females, for those aged 30 years and over, and also for youth aged 8-13 years. Conclusions Participation in sports does not appear to have protected these athletes from obesity. Arguably, this remains the most pressing health issue for people with intellectual disability, particularly in Western Europe.

Summary The extra strains experienced by families who care for a relative with intellectual disabilities are well documented. The provision of overnight (respite) breaks or supports in the home are common ways of supporting family carers. Often demand exceeds supply. Using data from a national register in Ireland, child and adults who received overnight breaks and in-home support were identified along with the characteristics that distinguished them from families that did not have these services. Moreover, changes in provision over a 10-year period were monitored and variations in provision across the country were ascertained. Findings Overnight breaks were the dominant form of family support in Ireland. However, they were available to fewer persons in 2017 compared to 2007, whereas the provision of home supports remained constant. Persons with severe and profound disabilities were those most likely to receive home supports or overnight breaks as were persons aged 30 years and over. There were persistent marked differences across the country in the provision of home supports, although the variation in the usage of overnight breaks had contracted somewhat in 2017. Applications Additional investment is needed to provide supports for families, given the increasing numbers of persons with intellectual disabilities living at home. A wider range of support options would provide greater choice and arguably improve the cost-effectiveness of current resources. Frontline professionals, such as social workers, need to be to the fore in persuading service commissioners of these needs based on empirical data as well as their personal experiences.

The disadvantages experienced by adult persons with disabilities are well documented. However, limited evidence is available on the extent of differences in comparison with the non-disabled population. In this study, selected indicators of social status and mental wellbeing derived from past research, were used with national samples of adult persons in Ireland with a disability (n = 440) and without a disability (n = 880) recruited through household quota sampling. In addition, comparisons were drawn with equivalent data derived from a contemporaneous national census. Although many of the differences were statistically significant, the effect sizes were mostly medium to low. Moreover, when the inter-relationships among the various indicators was taken into account using Discriminant Analysis, persons with disabilities were less likely to be employed, they reported lower levels of social engagement and had poorer emotional wellbeing. They were also older, more likely to be single and have no children. The study illustrates the potential of using comparative data to monitor the impact of national actions taken to reduce the inequalities experienced by persons with disability as well as highlighting the arenas into which professional supports need to be focused.

The use of psychotropic medication in children is increasing worldwide. Children with developmental disabilities seem to be prescribed these medications at a higher rate compared to their non-disabled peers. Little is known about prescribing in non-Western, middle-income studies. In Iran, the file records of 1133 children, aged 2 to 17 years, assessed as having autism spectrum disorder (ASD) or an intellectual disability (ID) in Tehran City and Province from 2005 to 2019 were collated, and information from parental reports of medications was extracted. Upwards of 80% of children with ASD and 56% of those with ID were prescribed a psychotropic medication with around one quarter in each group taking two or more medications. The rates were higher among male children showing difficult-to-manage behaviors such as hyperactivity, but less so for children of fathers with higher levels of education. The lack of alternative management strategies may be a significant driver for the use of psychotropic medications in Iran and other Low and Middle Income countries, despite their known side effects, and their failure to address the developmental needs of the children. Rather, multi-disciplinary, behavioral, therapeutic, and educational interventions are required, but these are not available widely in Iran, although a start has been made.

Sport has been promoted as a means of increasing the social inclusion of persons with intellectual disabilities. Suitable tools for evaluating this claim are not readily available. The aim of this study was to develop a self-report tool for use by people with intellectual disabilities regarding the social inclusion they experience in sport and in the community. A three-phase process was used. In the first phase an item bank of questionnaire items was created and field-tested with 111 participants. Initial factor analysis identified 42 items which were further evaluated in Phase 2 with 941 participants from six European countries. Construct validity was established first through Exploratory and then Confirmatory factor analysis. These analyses identified ten items relating to inclusion in sports and ten to inclusion in local communities. A third phase checked the usability and test-retest reliability of the short form with a further 228 participants. In all, 1280 athletes and non-disabled partners were involved from eight countries. This short social inclusion questionnaire has been shown to be a reliable and valid measure for use transnationally. Further psychometric properties remain to be tested, notably its sensitivity to change resulting from interventions aimed at promoting social inclusion.

Parents of children with developmental disabilities are at greater risk of poor mental health and social isolation that is compounded by family circumstances and living in rural settings. Often little personal support is available to parents. Family-centred interventions have been endorsed internationally for promoting children’s development as well as enhancing parental wellbeing. Yet current service provision is predominately child-focussed and clinic-centred. An innovative family-centred support service was designed and evaluated in a rural county of Ireland. Support staff visit the family home every two weeks for around one year. Developmental goals for the child are agreed with parents alongside actions to address the needs of parents and siblings. Community activities are identified or created to promote the social inclusion of the child and family in local communities as well as social activities for mothers. Thus far 85 families have been involved with this ongoing project. Baseline information on parents’ mental health and social isolation was gathered. A majority of parents had below average scores on a standardised measure of parental well-being as well low participation in social and community activities. These measures have been repeated with 42 parents who have completed their involvement with the project to date along with qualitative information of parents' experiences. Most parents achieved their chosen targets, particularly greater involvement in community activities, increased knowledge and skills along with more confidence and resilience. Significant increases in their well-being scores were reported but with limited impact on their social participation. Covid 'lock-downs' in recent months may have contributed to the latter. This evidence-based model of provision is an example of how current social care provision for families who have a child with developmental disabilities could be transformed even in rural areas at a relatively low cost.

Purpose Early identification and intervention is recommended for developmental disabilities such as autism spectrum disorders (ASD). Various screening tools are available, but most were developed in affluent English speaking countries. Design and methods In order to identify possible early signs of ASD within Iranian society, parents of 623 children in an age range from 3 to 7 years of age at risk of ASD, were interviewed about the signs that alerted their concerns. Also two screening instruments were developed and tested with the parents using items derived from the Gilliam Autism Rating Scale (GARS2). One focused on autistic behaviors and the second on developmental indicators. Results Using both tools, 93% of the children who were identified as likely to have ASD based on a full GARS assessment were identified using the two screening tools. Practice implications These assessments might be used in initial screening for ASD by early year's personnel or public health professionals with Iranian parents of toddlers who have concerns about their child's development.

Background People with intellectual disability die younger than their non‐disabled peers. In recent years, greater attention has been paid to closing the gap. However, evidence that this is being achieved is limited by the dearth of longitudinal, national data. Method Over 4,000 decedents identified in the Irish National Intellectual Disability Database from 2001 to 2016 were compared to deaths in the general population based on age and gender profiles using death rates and standardised mortality ratios. A binary logistic regression analysis also identified the characteristics of persons who had a higher risk of dying. Results Irish people with intellectual disability die younger and have a higher rate of death than their non‐disabled peers. Nor has the gap between their mortality and that of the general population closed in recent years. Conclusions More concentrated effort is needed in Ireland on promoting equitable access to health services for people with intellectual disability.

Training courses on autism spectrum disorders (ASD) are required to meet the needs of the increasing numbers of children attending schools and care centers with a diagnosis of this condition intern...

Background: Parenting of children with Developmental Disabilities is considered to be a challenging task. This group of parents are at risk for lower levels of being satisfied with caregiving to th...

Background: Increased levels of obesity have been reported for people with intellectual disability based on data mostly gathered in high income countries. Likewise few studies internationally have ...

BACKGROUND Ireland has a growing population of adult persons living with family carers, thereby increasing the demand for residential places. Simultaneously, government policy aimed to reprovision residents living in congregated settings but at a time when funding was curtailed due to the economic crisis. This study examines the movements of people into and among three types of residential options between 2009 and 2014. METHOD A cohort of 20,163 persons recorded on the National Intellectual Disability Database in 2009 was identified and tracked to the 2014 database. RESULTS An estimated 200 persons per annum (@1.6% of those living with families) moved from family care although the number of places available nationally fell by 9%. Moreover, transfers of existing residents into vacated places tended to exceed those from families. CONCLUSIONS More people will have to continue living with their families and for longer if funding for new places remains curtailed.

Purpose The purpose of this paper is to document the impact of major policy changes and reductions in government funding on residential provision for people with intellectual disabilities (ID) in Ireland. Design/methodology/approach Ireland is unique in having a national database of people in receipt of services from specialist ID providers. Information on persons in residential settings from 2005 to 2016 was examined in terms of changes in the types of provision over time and broken down by age groups. Findings From 2011 onwards, cuts in government funding coincided with a continuing reduction in the overall provision of residential accommodation for adults with ID. There was a parallel increase in the number of people living with family carers, especially persons aged 55 years and over. The greatest reduction was in residential centres which was in line with recent policy but this was not matched by an increase in alternative options, with fewer people aged 20-34 living in residential accommodation of any kind. Compared to Great Britain, Ireland has proportionately more residential places with fewer people living independently. Social implications More Irish families have to continue caring for their adult relatives into their old age. Likewise, those resident in group homes and living independently are growing older which means there is an increased likelihood they will require additional support. Originality/value This national data set is a valuable tool for monitoring changes in service provision over time and for determining the impact of government policy and funding decisions.

Accessible summary In Ireland school leavers with intellectual disabilities were tracked over a 10-year period from 2004 to 2014. Nearly half were no longer known to services after 10 years. In the 5 years after leaving school, most young adults went to either training centres or to care centres. After 10 years, most were placed in care centres. Few were getting help to obtain paid work or were receiving support in the community. New models of day supports are being promoted by the Government but they are not widely available. Shortage of money and pressure to provide places for school leavers may have contributed to the growth of attendances in care centres. AbstractBackground In recent years, efforts have been made to improve the transition of pupils with intellectual disabilities to adult services and to offer a wider range of choices. However, there have been few longitudinal studies to monitor the services provided to young adults post-school. This case study in the Republic of Ireland identified the services provided 5 and 10 years after pupils had left school. Method Using records from the National Intellectual Disability Database (NIDD), a cohort of 3,206 young people aged 14 to 21 years in 2004 were followed up in 2009 and again in 2014. The pathways to different types of services were identified. Results Upwards of 50% of school leavers were no longer in receipt of services 10 years later. Most had mild intellectual disabilities. Of those who were still involved with services, after 5 years most attended either training centres or care centres with small proportions in sheltered workshops or employment schemes. By 2014, most students leaving training centres had transferred to care centres; including those with mild disabilities. There had been little increase in the numbers receiving other types of day support. Conclusions Care centres remain the most common form of day services provided to school leavers in the Republic of Ireland. The economic recession may have contributed to this. Recent government policies aim to promote more innovative day supports with a focus on employment but further cohort studies should monitor the success of these initiatives.