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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. © 2020 Linehan C et al.

Att gå från att vara ungdom till att bli vuxen kan innebära en rad förändringar, som att flytta hemifrån, börja studera eller arbeta, skapa nya relationer och kanske träffa en partner. Men det handlar också om att möta högre krav på att fatta egna beslut och ta ansvar för beslutens konsekvenser. Med andra ord: att etablera sig som vuxen innebär såväl möjligheter som utmaningar för unga människor. Detta gäller givetvis också för unga som lever med olika typer och grader av funktionsnedsättning. Den här kunskapsöversikten redovisar forskningsbaserad kunskap om övergången från ungdoms- till vuxenliv för personer med funktionsnedsättning., The transition from adolecense to adulthood includes several changes, such as completing school, leaving home and start working. It also involves establishing new relationships, meeting a partner, having your own family and shaping a new identity as an adult. This transition may for some young adults, and especially for some young adults with disabilities, involve challenges. In the present study, a broad mapping of the scientific knowledge about the transition for young adults with disabilities has been completed. The study focuses specifically on conditions for transition, for instance different supporting measures, and outcomes such as social relationships and employment. The aim of the study is to review the state of art in transition research, from childhood to adulthood, for young adults with disabilities.

Introduction: To make decisions is central to individuals' welfare, well-being and active citizenship. Self-determination for people with intellectual disability (ID) has been increasingly emphasized, which requires knowledge of supported decision-making. Methods: Supporting young people with ID to self-determination is a central task for the school in Sweden. Through a survey and focus groups with school staff as well as observations of decisions in schools and interviews with young people with ID, the occurrence and design of supported decision-making have been analyzed. Results: The individual's prerequisites, the staff's attitude and competence, the type of decision situation and access to assistive devices are factors that affects the decision-making process. Supported decision-making occurs daily in the school but varies greatly depending on the teachers' approach. Some work actively to encourage and support the students in doing their own decisions. More traditional approaches, the students' influence does not become so prominent an uncertainty was noted among the students, which turned out that they frequently asked questions about whether they were doing right. Implications: Supported decision-making is required to involve people with ID effectively in decisions about their own lives and strengthen an active citizenship, especially in a society characterized by increased freedom of choice and marketisation of education and services.

There is limited knowledge about young persons with intellectual disability who are Not in Employment, Education or Daily activity (NEED) in Sweden. The aim of the study was to explore the post-upper secondary school situation for persons with intellectual disability not involved in traditional occupations. A national database containing 2955 persons, representing 24.1% of the total (N=12,269) was used. The results revealed a heterogeneous group where financial support was common and few made use of disability services. Gender, municipality, programme type, financial support and disability services were significantly associated with not having an occupation as opposed to being in employment, education or daily activity. Time was a central factor, as the early years after upper secondary school appear to be an important period for changing NEED status. This is the first large scale study to describe these persons not involved in traditional occupations in Sweden and further research is required., The study received financial support from Halmstad University and MISA AB, Stockholm, Sweden.

Self-determination and the ability to express opinions and preferences are fundamental to all people. Self-advocacy (SA) among people with intellectual disability (PWID) presents opportunities for them to develop skills to have a say and influence changes in their local environments. The aim of this article is to explore and understand organizational similarities and differences of SA groups for PWID in Sweden by focusing their structures and activities. Within the theoretical framework of Resource-Dependency and New Institutional Perspectives, data from six Swedish SA groups belonging to two different national organizations, have been analyzed. Factors such as affinity and expectations show limited differences, while power distribution, rules and the role of support persons point to greater diversity. However, good relations within the local organizational field seems to be essential to maintain strong SA for PWID.

Self-determination and the ability to express opinions and preferences are fundamental to all people. Some people with intellectual disability no longer accept a subordinated role as disabled and new self-advocacy groups have evolved. The aim of this study was to analyse the meaning and importance of engagement in a self-advocacy group for self-advocates daily life and identity. An interpretative abductive approach was used to analyse data from interviews with 26 self-advocates from six self-advocacy groups in Sweden in relation to the theoretical concepts; recognition, social capital, culture capital and self-determination. The key finding is that the vast majority of the participants experienced a changed self-perception, as more skilled, social and confident people, depending on group affiliation, their personal engagement and positions within the group. The conclusion is that self-advocacy is important for daily life and identity of people with intellectual disability. The self-organized movements indicate an important change in society and the results are of importance not only for the target group but for shaping future support and treatment from society of people with intellectual disability.

I länder med starkt decentraliserat ansvar för välfärdstjänster kan skillnader mellan kommuner och regioner förväntas. I artikeln studeras om, och iså fall hur, efter(sär)gymnasial sysselsättning bland personer med intellektuell funktionsnedsättning varierar beroende på i vilken kommungrupp eller geografisk region de bor. Analyserna baseras på data från ett unikt register som inkluderar 12 269 avgångselever från gymnasiesärskolan i Sverige från åren 2001–2011. Resultaten visar att kommungrupp och region har en viss oberoende effekt på typ av efter(sär)gymnasial sysselsättning samt att andelen flyttningar överkommungränser som företas i studiepopulationen är få. Slutsatsen är att boendegeografiska variationer, som identifierats i andra delar av det svenska välfärdssystemet, också i viss utsträckning gäller efter(sär)gymnasial sysselsättning., In countries with highly decentralized welfare services, disparities between municipalities and regions can be expected. The article analyzes whether, and in that case, how, the type of post-school occupation among graduates from Swedish upper secondary school for pupils with intellectual disability (USSID) varies depending on the municipality or geographic region the former pupils live in. The analyses are based on data from a unique national database that includes 12,269 pupils who graduated from USSID between 2001 and 2011. Results show that municipality of residence has an independent effect on the type of post-USSID occupation. Moreover, the total percentages of relocations in the studied population are low. The authors conclude that the geographical variations identified in other parts of the Swedish welfare system also apply partly to post-USSID occupations. The article discusses whether municipal and regional affiliation is of particular significance for pupils from USSID, because of their low propensity to relocate.

Aim: This study explores and analyses, from an intersectional perspective, the association between parents’ country of birth as well as their level of education and their children's type of occupation after graduating from Swedish upper secondary school for pupils with intellectual disabilities (ID). Method: This is a quantitative study based on three registers (HURPID, LSS, LISA). The analyses are based on logistic regression, interaction analysis and chi-square tests. The sample size was 12,269. Results: Children of less-educated parents tend to have paid employment and children of highly educated parents tend to participate in disability day programs. Parents’ country of birth and level of education affect the former pupils’ post-school occupation in different ways. The association between parents’ country of birth and former pupils’ occupation is modified by parents’ level of education. Conclusions: Knowledge and awareness of different background conditions among children graduating from upper secondary school for pupils with ID need to increase., Conference poster

Knowledge about people with intellectual disability (ID) and their connections to the labor market is scarce. The aim of this study was to describe and analyze the entry into and representation in the Swedish labor market for people with ID, discussed with a special focus on the gender perspective. This study included 2,745 individuals (30% women and 70% men) who graduated from Swedish upper secondary schools for pupils with intellectual disability (USSID) in the 2000s, and who were defined as employees in 2011. Graduation data from 2001 to 2011 were analyzed in relation to employment data from 2011 and adjusted for gender, graduation year, and educational program. Results show that men who attended a national USSID program and graduated between 2001 and 2006 were the most likely group to have a job. The authors conclude that the gender differences in the Swedish labor market are more clearly pronounced among women and men with ID in relation to employment rate, wage levels, and professions than in the general population. Education, welfare-services, and interventions specifically targeted to meet the needs of people with ID have to develop in more gender-sensitive ways. © 2016 International Association for the Scientific Study of Intellectual and Developmental Disabilities and Wiley Periodicals, Inc., The study received financial support from MISA AB, Stockholm, Sweden.

Aim: This study aimed to further understand the new forms of self-advocacy in Sweden by describing and analyzing the characteristics and organisation of the movement and its activities and by analyzing the meaning for the members and the influence for identifications, self-determination, relations and daily life. Method: A national mapping identified more than 60 self-advocacy groups. Case studies of four groups, selected to reflect organisational diversity, were conducted using interviews, focus-groups, observations and document review. Results: Self -advocacy groups can be everything from totally independent to controlled by parents or staff. Despite this, the self-advocacy groups have an important impact on the lives of their members through the value they experience by achieving independence, self-determination and social connections with each other and outsiders. The most independent groups have also mounted resistance to society´s views and treatments of people with ID and the ways of delivering services. Conclusions: Self-advocacy-groups in Sweden are important to their members daily life and are slowly beginning to influence attitudes towards people with ID and traditional ways to offer and organise support and service. © 2016 MENCAP, the International Association for the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

Ideologically propelled by the Normalization Principle the Swedish policy and service system for people with intellectual disability has since the 1960th undergone drastic changes like deinstitutionalization and decentralisation of services to the local municipalities. This paper aims to analyze experiences of the Swedish welfare system and later year’s changes and reforms in respect to people with intellectual disability. Based on a description of different types of welfare models, Swedish policy and laws and the transformation of the welfare system, an analysis and discussion follow based on current research knowledge about major trends in practice and everyday life for people with intellectual disability. Special focus is on the greater variation in support and services, increasing self-advocacy, the impact of 20 years with a right-based law and on the increasing marketization of disability services in relation to quality of services and outcomes for people with intellectual disability.

A growing number of young people in Sweden with intellectual disability have organized themselves during the last 15 years in self-advocacy groups for socializing, empowerment, and expressing opposition to the norms and attitudes in a society that labels them as disabled. At the same time, the Swedish welfare system has transformed dramatically with processes of far-reaching individualization, closure of the major institutions, decentralization of responsibility from the state to local governments, and an emerging welfare market where service users are turned into customers. The aim of this article is to analyse and discuss the significance of self-advocacy in the new welfare context. Data were collected over a period of more than 10 years using repeated interviews with members of two self-advocacy groups and participation observations. Findings suggest that participation in self-advocacy groups opens up members for increasing health and well-being through new roles and identities, and it strengthens their control over everyday life. Support is still needed, however, but in new ways; otherwise, the restrictions of the institutions will simply be reconstructed in the new welfare system.

The aim of this article is to examine life after school for young adults with intellectual disabilities in Sweden. It identifies a snapshot of the post-school destination in 2011 of students of Swedish Upper Secondary Schools for Pupils with Intellectual Disability (Special Secondary Schools), who graduated between 2001 and 2011. This national registry study used personal identification numbers to link data for about 12,269 former students in the Halmstad University Register on Pupils with Intellectual Disability with data about labour market participation and service provision under the Swedish disability legislation (Swedish LSS Act, 1994, the Act Concerning Support and Service for Persons With Certain Functional Impairment). Results showed that the largest proportion (47%) of former students participated in disability day programs, known as “daily activities”; 22.4% were employed, most with some type of wage subsidy; and 6.6% participated in various types of further education programs. A sizeable group (24%) were described as being “elsewhere”, not engaged in employment, education, or disability day programs. The type of post-school occupation is associated with gender, the type of educational program undertaken at secondary school, and age. The authors found a high risk of young people with intellectual disabilities falling through safety-net welfare or post-school participation provisions. Even in a country such as Sweden, which has comprehensive post-school programs, almost a quarter of young adults with intellectual disabilities were socially excluded, without education, disability day programs, or employment.

The aim of this article is to examine life after school for young adults with intellectual disabilities in Sweden. It identifies a snapshot of the post-school destination in 2011 of students of Swedish Upper Secondary Schools for Pupils with Intellectual Disability (Special Secondary Schools), who graduated between 2001 and 2011. This national registry study used personal identification numbers to link data for about 12,269 former students in the Halmstad University Register on Pupils with Intellectual Disability with data about labour market participation and service provision under the Swedish disability legislation (Swedish LSS Act, 1994). Results showed that the largest proportion (47%) of former students participated in disability day programs, known as “daily activities”; 22.4% were employed, most with some type of wage subsidy; and 6.6% participated in various types of further education programs. A sizeable group (24%) were described as being “elsewhere”, not engaged in employment, education, or disability day programs. The type of post-school occupation is associated with gender, the type of educational program undertaken at secondary school, and age. The authors found a high risk of young people with intellectual disabilities falling through safety-net welfare or post-school participation provisions. Even in a country such as Sweden, which has comprehensive post-school programs, almost a quarter of young adults with intellectual disabilities were socially excluded, without education, disability day programs, or employment. © 2015 Australasian Society for Intellectual Disability, Särskolan - och sen?

In Sweden, the normalisation principle has been important behind reforms like deinstitutionalisation and the provision of services within the community for people with intellectual disabilities. The aim of this collection of articles about Swedish disability policy and practice across the life course is to give a research-based examination of the current situation for people with intellectual disabilities. This introductory article gives an overview of the provision of education and support systems for people with intellectual disabilities in Sweden today, and highlights the current trends and challenges faced by these people. The paradox of increasing self-advocacy and at the same time increasing categorisation is discussed, as well as the discrepancies in service provision. Comparisons of similarities in, for example, marketisation between the Australian National Disability Insurance Scheme and the Swedish rights-based legislation should be useful for knowledge and development in both countries. © 2015 Australasian Society for Intellectual Disability

Aim: In recent years an increased number of adults with intellectual disability in Sweden have been organized in self-advocacy groups since they no longer accept the perceived subordinate role as a disabled person in society. The aim of this study was to gain an understanding of the importance of being a member in a self-advocacy group and what impact it had on the members' daily life, relationships, self-determination and identity. Method: An interpretative approach was used to analyze data from interviews with 26 participants in four different groups. The semi-structured interviews were supplemented with eight interviews conducted with support workers, focus-group interviews, observations during meetings and document reviews. Findings: The findings suggest that the participants' engagement in a self-advocacy group is meaningful in several but varies ways. An improved life-situation consisting of strengthened control in every-day life and increased self-confidence are of great importance, but equally important is the perceived possibility to help others and make a difference in their lives. Self-advocacy is primarily understood in terms of achieved independence and social connections within the group, but also as influencing outsiders' attitudes. Conclusions: The self-advocacy movements indicate a significant change in society and are important for the target group as well as for shaping future support and treatment.

Aim: Ideologically propelled by the Normalization Principle the Swedish policy and service system for people with intellectual disability has since the 1960 undergone drastic changes like deinstitutionalization and decentralisation of services to the local municipalities. The aim of this paper focusing the post-normalization disability policy and practice is to present a research-based examination of the current situation for people with intellectual disability in Sweden. Method: Meta-analysis of current Swedish research in the field of intellectual disability. Findings: This paper highlights the right-based law as well as the current trends and challenges faced by people with intellectual disability. The paradox of increased self-advocacy movement at the same time as the categorization of children and youth as intellectual disabled is increasing is discussed as well as the discrepancies in service provision and the increasing number of private service providers. Conclusions: People with intellectual disability in Sweden face a number of challenges in a considerably transformed welfare system. Comparisons of similarities and differences in for example the self-advocacy movement or the marketization between the Australian National Disability Insurance Scheme and the Swedish rights-based legislation should be useful for knowledge and development in both countries.

Vad händer efter gymnasiet för elever som gått ut gymnasiesärskolan? En unik studie från högskolan i Halmstad har kartlagt de fd eleverna och resultatet visar att uppfattningen om att eleverna per automatik hänvisas till daglig verksamhet inte stämmer.

BACKGROUND: Individuals with disabilities are often far removed from the labour market and research shows that employers’ negative attitudes toward persons with disabilities create a barrier to attaining employment. OBJECTIVE: The purpose of this study was to investigate Swedish employers’ experiences and attitudes toward hiring persons with various disabilities. METHODS: A vignette method with accompanying questions was used. A total of 212 employers, who were actively seeking to hire, were recruited via an online employment site and participated in the study. RESULTS: The results indicated that there is some interest for employers to hire persons with disabilities and that this depended on the type of disability a person has. Other results demonstrated that previous experience of employing persons with disabilities was linked to greater interest in hiring, that employers had greater interest to hire than they thought other employers had, and that openness about the disability was deemed as an important factor in the hiring process. CONCLUSION: The novelty of this study is its use of a vignette design to investigate employers’ attitudes in Sweden. Moreover, the results are much in line with international research. This contributes to knowledge and development of increasing employment for persons with disabilities. © 2015 - IOS Press and the authors. All rights reserved.

Aim: In the last decade, young adults with intellectual disability (ID) have begun to self-organize in order to increase power over their own lives and remove barriers to their social participation in society. This study aimed to further understand the new forms of self-advocacy in Sweden by describing and analyzing 1) the characteristics and organization of the movement and its activities; 2) the influence of membership on self-identity, self-determination, social relationships and daily life; and 3) the influence of the movement on social attitudes and services to people with ID. Method: A national mapping exercise identified more than 60 self- advocacy groups. Case studies of four organizations, selected to reflect organizational diversity, were conducted using interviews, focus-groups, observations and document review. Results: Despite variability in organizational form and size, self-advocacy groups have an important impact on the lives of their members and have mounted resistance to society’s views and treatment of people with ID and the traditional ways of delivering services. Conclusion: The new self-advocacy movement in Sweden is beginning to influence the way Swedish society regards people with ID, and reshape support services to enable greater service user control.