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Transition to adulthood for young people with intellectual disabilities and developmental disabilities (IDD) has been given significant attention in research, policy development and practice. The aim of this paper was to explore how a recently developed theoretical outcomes-based framework for measuring the quality of services for people with disabilities could potentially be useful in conceptualizing and supporting successful transition to adulthood. The theoretical discussion draws on both the scoping review and template analysis that was used to develop the Service Quality Framework and on a separate study synthesizing expert completed country templates and literature review which included models of and research on successful transition to adulthood. Synthesis identified that using a quality of life outcomes focused framework of Service Quality could be mapped onto and extend current thinking on what is seen as successful transition to adulthood by putting the focus on successful transition as people with IDD moving towards having similar opportunities and quality of life as other adults without disabilities living in the same community/society. Implications of a more wide-ranging definition and holistic view for both practice and future research are discussed.

Background: A growing body of evidence attests to the disproportionate impact of COVID-19 on persons with intellectual and developmental disabilities (IDD) during the pandemic. This study asked caregivers about their perceptions of how COVID-19 impacted them and the people they support. Method: An online survey was conducted in 12 countries during August-September 2020 and sought information on demographics, support practices, information and training, experiences of COVID-19, social distancing, and wellbeing, as measured by the DASS12. This study reports on 3,754 family members, direct support professionals, and managers who participated in the survey. Results: Caregivers observed increases in depression/anxiety, stereotyped behaviours, aggression towards others and weight gain in the person(s) they supported. They also reported difficulties supporting the person(s) to access healthcare. Families reported reducing or ceasing employment and absorbed additional costs when supporting their family member. Direct support professionals experienced changes in staff shifts, staff absences, increased workload and hiring of casual staff. Caregivers' wellbeing revealed high levels of stress, depression, and less so anxiety. The strongest predictor of wellbeing among families was observation of changes in mood in the person(s) they supported, while for direct support professionals, the strongest predictors of wellbeing were reorganisation of staff shifts and increases in new direct support staff. Discussion: Findings support the contention of this population experiencing a disproportionate burden during the COVID-19 pandemic, reflecting historical inequities in access to healthcare and other human rights violations which are now protected under the United Nations Convention on the Rights of Persons with Disabilities.

Background: This protocol outlines research to explore family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods: An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore their perceptions of the impact of COVID-19 in terms of demographics, living arrangements, access to services, social distancing, and carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 18 countries worldwide for international comparison. The survey team have extensive personal and professional networks and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin's Human Research Ethics Committee (HS-20-28-Linehan). Dissemination: Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies., Previously titled: COVID-19 IDD: A global survey exploring the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers

This article draws on the findings of the EU Framework 7 project DISCIT to explore the living situation of people with disabilities a decade after the adoption of the UN Convention on the Rights of Persons with Disabilities in nine European countries representing different welfare state models and different stages in the process of deinstitutionalisation. A review of the research literature, policy and available statistics was combined with interviews with key informants in each country to explore the current living situation, changes over time and the barriers to, and facilitators for change. The article focuses in particular on whether people are experiencing opportunities for social inclusion on an equal basis with others. Although a lack of available data hampered conclusions on living situation, it was clear that there had been some change in terms of policy and funding streams available to support community living. Some countries had moved slightly towards community living, while others reported more people in institutions or the development of bigger services in the community. There was evidence of continued inequality in the living situation and full inclusion of people with disabilities, with those with intellectual disability and psychosocial disabilities being the most affected. In terms of barriers (and consequently facilitators) there were three sources: 1) policy, 2) social care and support systems, and 3) awareness, attitudes and advocacy. The need to involve people with disabilities in policymaking and the need for a co-ordinated approach between all actors in the disability sector was seen as critical for achieving further change.

This article draws on the findings of the EU Framework 7 project DISCIT to explore the living situation of people with disabilities a decade after the adoption of the UN Convention on the Rights of Persons with Disabilities in nine European countries representing different welfare state models and different stages in the process of deinstitutionalisation. A review of the research literature, policy and available statistics was combined with interviews with key informants in each country to explore the current living situation, changes over time and the barriers to, and facilitators for change. The article focuses in particular on whether people are experiencing opportunities for social inclusion on an equal basis with others. Although a lack of available data hampered conclusions on living situation, it was clear that there had been some change in terms of policy and funding streams available to support community living. Some countries had moved slightly towards community living, while others reported more people in institutions or the development of bigger services in the community. There was evidence of continued inequality in the living situation and full inclusion of people with disabilities, with those with intellectual disability and psychosocial disabilities being the most affected. In terms of barriers (and consequently facilitators) there were three sources: 1) policy, 2) social care and support systems, and 3) awareness, attitudes and advocacy. The need to involve people with disabilities in policymaking and the need for a co-ordinated approach between all actors in the disability sector was seen as critical for achieving further change.

[EN] This paper presents biographical data from the European ScienceFoundation-project Quali-TYDES, a collaborative research studyunderway since 2010 at universities from Ireland, Austria, Spainand the Czech Republic. The project analysed accounts of the expe-riences of persons with disabilities, most aged between 20 and30. It is a generation educated in a time of radical policy shiftsin the educational sector in all involved countries. This paper willsolely focus on the narratives of interviewees who had accessto tertiary education. Using a life course model developed byPriestley and Shah, the paper will discuss which institutional path-ways facilitated the access to higher education, which transitionsand turning points could be identified in the individual biogra-phies, and which resources and capital were activated to whateffect. The data show that economic, social and cultural capital,including family resources, advocacy and social networks, are nec-essary to access inclusive pathways. In the long run public service provisions, notably personal assistance, can facilitate greatereducational attainment and increase the opportunities for self-determination., [FR] Cet article présente les données biographiques issues du projet Quali-TYDES de la Fondation européenne de la science, recherche collaborative qui a été menée depuis 2010 dans des universités des pays suivants : Irlande, Autriche, Espagne et République tchèque. Le projet analyse les témoignages de personnes handicapées. La plupart des sujets sont de la tranche d’âge 20–30 ans. Il s’agit d’une génération qui a été scolarisée dans une période de changements radicaux des politiques éducatives de tous les pays impliqués. L’article met seulement l’accent sur les témoignages des personnes interrogées qui ont eu accès à l’enseignement supérieur. Sur la base d’un modèle de parcours de vie développé par Priestley et Shah, l’article s’interroge sur les voies institutionnelles qui ont facilité l’accès à l’enseignement supérieur, sur les transitions et les tournants constatés dans les biographies individuelles, sur les ressources et les financements qui ont été mis en place, et ceci à quelles fins. Les données révèlent que les ressources économiques, sociales et culturelles, y compris les ressources familiales, les mouvements de défense des personnes et les réseaux sociaux, sont indispensables pour l’accès à des parcours inclusifs. À long terme, l’offre de services publics, notamment l’accompagnement personnalisé, peut faciliter l’accès à des niveaux scolaires supérieurs et augmenter les chances d’autodétermination.

[EN] There has been much debate around the role of parents in supporting their disabled children in mainstream schools. Several authors have pointed to parents’ advocacy and their engagement with professionals. Parents often perceived mainstream settings as fostering better social and academic learning for their offspring. However, while parents’ perspectives on ‘inclusive education’ have been subject to considerable research, relatively little is known about perceptions of parental support in mainstream schooling from the viewpoint of the disabled persons involved. Recently, a few studies have pointed to the benefits of biographical approaches for analysing this topic of concern. This paper aims to contribute to this emergent strand of research, and investigates the interplay of students, their parents and mainstream schools in relation to disability over time. In so doing, we draw on the life stories of three disabled young persons. In reading the stories, we refer to life course concepts and capital theory. Our analyses show that, across cases, despite different national education systems, participants’ perceived learning environments in mainstream schools as frequently characterised by the disabling practices of professionals. Parental support is highlighted in the narratives as highly influential for academic achievement and in facilitating progress through mainstream school settings in face of attitudinal barriers. Parents’ interventions and their social and cultural capital played a significant role in shaping participants’ subjectivities and responses to hostile learning environments. Strategies developed in these settings appeared to be ‘learned’ and even internalised by our participants, and can be identified as key also in tackling challenges in post-school life. While the importance of parental support to the educational trajectories of their offspring is well described, we point to the specificity of parental support as a reaction to disabling learning

This paper seeks to compare the evolution of inclusive education policy in the four countries of an EU-funded research project (QualiTYDES) operating under the shared policy environment of the UN, EU and European Commission. A shared policy cannot of course be assumed to result in common legislative or provisional outcomes at national level. The different sociocultural, political, historical and economic contexts in each country shape its journey towards ‘compliance’ with an international convention (both pre- and post-ratification), and neither the route nor the destination can be assumed to be shared, given the scope for different interpretations of the same texts. This paper places the implementation trajectories of four European countries side by side as they attempt to move towards ‘inclusive’ education systems. Following a brief overview of the international education policy environment relating to the education of people with disabilities, we describe the national education policy responses in Ireland, Austria, Spain and Czech Republic in recent decades, including both legislation pertaining to special educational need and implementation of policies in practice. The comparison highlights the different manifestations of inclusive education current in each country, and also explores the challenges which have arisen as individual countries attempt to align international policy with provision in existing education systems, each with their own legacy interests, pressures and priorities. Examples of ‘gaps’ in this alignment are where learners with disabilities/SEN are likely to be failed, and represent the critical points at which barriers to fully inclusive education arise and negatively impact opportunity over the life course.