Predictors of access to healthcare professionals for people with intellectual disability in Ireland.

The Irish National Intellectual Disability Database is updated annually and in 2017 contained records for nearly 22,000 persons aged 15 years and over. Information was extracted on the contacts each person had with one of eight health professionals in the years 2007, 2012 and 2017. Over these years, there was an increase in the number of people in contact with any professional or with four and more professionals. Nevertheless, the people less likely to have contact were those with milder forms of intellectual disability, persons living with family carers or independently and those linked to smaller provider agencies. By contrast, the odds of people with more severe disability in residential settings were up to eight times greater for having contact with four or more different professionals. As demand for healthcare grows due to increased longevity and service models shift to the community, redeployment of existing professional resources will be needed along with a review of the skill mix.

Developmental Signs of Autism Spectrum Disorder in Iranian Pre-Schoolers.

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.

Perceptions of the rights and capabilities of people with intellectual disability in the United States.

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.

People with intellectual disability in Ireland are still dying young.

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.

Family carers of people with intellectual disabilities in Ireland: Changes over 10 years.

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.

Family experiences of personalised accommodation and support for people with intellectual disability.

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.

Obesity in youth and adults with intellectual disability in Europe and Eurasia.

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.

The impact on social relationships of moving from congregated settings to personalized accommodation.

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.

Irish persons with intellectual disability moving from family care to residential accommodation in a period of austerity.

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.

Changes in the self-rated well-being of people who move from congregated settings to personalized arrangements and group home placements.

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.

Caring for Adults with Intellectual Disability: The Perspectives of Family Carers in South Africa.

BACKGROUND: Internationally adults with intellectual disability are largely cared for by their families, especially in low- to middle-income countries (LAMIC). Compared to high-income countries, little is known about their experiences in LAMIC such as South Africa. METHODS: Focus group discussions were carried out with 37 family caregivers (FCGs) in the Cape Town metropole. These were transcribed and analysed thematically. Core categories were identified and validated through member checking. RESULTS: Family caregivers showed strong commitment to care despite the heavy responsibility and burden of care that women especially experience. They recognize the limited personal growth opportunities for people with intellectual disability that increases the caregiving burden. FCGs identify supports and resources in the community that assist them with their care responsibilities but often feel let down by services. CONCLUSIONS: Improved family supports appropriate to the resources in LAMIC are needed especially when existing carers are no longer able to provide care.

The role of support staff as people move from congregated settings to group homes and personalized arrangements in Ireland.

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.

Relocating people with intellectual disability to new accommodation and support settings: Contrasts between personalized arrangements and group home placements.

Internationally the relocation of people with intellectual disability from institutions has brought significant gains to their quality of life. This study contrasted three groups of persons in Ireland who moved either to personalized arrangements (n = 29) or to community group homes (n = 31) with those who remained in congregated settings awaiting relocation (n = 29). Persons moving to rented accommodation with personalized support tended to be younger and had fewer support needs than those in group homes. They had greater control and choice in their lives, more community engagement and increased personal relationships compared to residents in group homes but those remaining in congregated settings fared worse of all. However, average staff costs were significantly higher in the latter settings. The implications for the future provision of group living arrangements are discussed along with the need for further longitudinal research to assess the sustained impact of personalized arrangements and their funding.

Optimizing the uptake of health checks for people with intellectual disabilities.

The provision of an annual health check for adult persons with an intellectual disability is intended to counter the health inequalities experienced by this population. This study documents the uptake of checks across general practitioner (GP) practices in Northern Ireland over a 3-year period. In all, 84% of GP practices provided health checks covering an estimated 87% of the population with intellectual (learning) disabilities. Overall 64% of people known to practices had received a health check which is significantly higher than comparable percentages of around 46% reported for England. Nevertheless the uptake by patients varied across the five trusts in Northern Ireland but less so than across the English health authorities. These variations were linked to the deployment of health facilitators. However, younger people living with families, or independently, in more socially deprived areas were less likely to have had a health check. Ongoing monitoring is needed to ensure the quality of the checks provided and that health improvement plans are implemented.

Developing a best practice model for partnership practice between specialist palliative care and intellectual disability services: a mixed methods study.

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.

Co-researching with people who have intellectual disabilities: insights from a national survey.

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. This paper tells you about how people with intellectual disabilities worked with a group of university researchers. Both groups were called co-researchers and together they ran 23 focus groups across Ireland. People with intellectual disabilities talked about their lives and what could make them better. They said they needed to have a good place to live; a job; enough money; relationships; and acceptance as respected citizens. The university co-researchers wrote about what it was like doing research together and how people with intellectual disabilities joined the advisory group; decided on the questions; ran focus groups; and presented findings. Together they grew into a community of researchers where the university co-researchers shared their research skills and people with intellectual disabilities shared what it was like living with a disability. They both saw great value in working together and plan to work more to make this type of research happen.

Identifying the key concerns of Irish persons with intellectual disability.

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.

Creating Family-Centred Support for Preschoolers with Developmental Disabilities in Low-Income Countries: A Rapid Review to Guide Practitioners.

Preschoolers with disabilities and their caregivers have been neglected in health and social service provision in most low-income countries and arguably also in low-resourced areas of more affluent nations. Yet as this rapid review of the published literature identifies, there are low-cost, evidence-based strategies to address their needs that can be implemented in communities by local people. Five key features of the necessary supports are examined. First, the leadership functions required to create and implement the support services. Second, the family-centred, home-based support provided to caregivers and the personnel undertaking this form of support. Third, providing opportunities for peer support to flourish and encouraging the formation of advocacy groups across families. Fourth, mobilizing the support of significant groups within the community: notably, traditional healers and leaders, health services and poverty alleviation initiatives. Fifth, devising ways in which preschool educational opportunities can be offered to children as a prelude to their inclusion in primary schools. The review serves a further purpose. It provides an example of how public health researchers and academics could achieve more rapid implementation of evidence-based knowledge into existing and new support services through dissemination to community practitioners.

Creating Family-Centred Support for Children with Developmental Disabilities in Africa: Examples of Local Community Interventions.

Preschoolers with disabilities and their family caregivers are overlooked by many public health initiatives, especially in low-income countries. Yet they can benefit from early intervention to promote their development soon after birth and to provide a better quality of life for their families. In this paper, we describe how a community-based approach has been implemented with minimal funding in two areas in Zimbabwe: a township in Harare and in rural areas of Manicaland Province. Our aim in sharing this information-allied with references to research studies recently undertaken in Africa-is that it will enable similar support to be replicated in other communities by local personnel. A logic model is used to describe the situation in which the two projects work, the various inputs they have provided to their community, and the different forms of support they have offered to the children and their caregivers. The project outputs are listed in terms of the number of beneficiaries helped and the activities undertaken. The outcomes achieved for the children, families, and communities are reported. The sustainability and extensions of community-based projects to address unmet needs are discussed. The main conclusion is that disadvantaged communities can be energised to address the needs of their most marginalised residents.

Perceptions of effective support services to families with disabled children whose behaviour is severely challenging: a multi-informant study.

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 functioning and 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 and creation of tangible benefits for the family and for the child.