Book review

'Normaliseringsprincipen. (The Normalization Principle)', Author: Nirje, Bengt. Lund: Studentlitteratur, 200

COVID-19 IDD: A global survey exploring the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers

Background: This protocol outlines research to explore the impact of coronavirus disease 2019 (COVID-19) on individuals who have 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 the impact of COVID-19 on this population in terms of demographics, living arrangements, access to services, the impact of social distancing, and also 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 16 countries worldwide for international comparison. The survey team have extensive personal and professional networks in intellectual disability 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

Self-advocacy in Sweden-an analysis of impact on daily life and identity of self-advocates with intellectual disability PUBLIC INTEREST STATEMENT

Abstract: 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

The challenge of including and organizing special support in mainstream services - A Swedish perspective

In this paper I will first give an introductionto the welfare system in Sweden in respect topersons with intellectual disability. Secondly, Iwill explain the policy, laws, responsibility andthe definition of intellectual disability, includingthe question of mainstream and special services/support. This is followed by a discussion aboutconcepts of disability and about responsibility,collaboration, organisation and competence

Normalisering och kategorisering: om handikappideologi och välfärdspolitik i teori och praktik för personer med utvecklingsstörning

The research concludes that physiotherapy is a socially constructed process in which meaning is created from bodily experience. Physiotherapy opens in this process an opportunity to bridge the gap between biomedical and psychotherapeutic alternatives in the rehabilitation of persons suffering from undefined pain and tension. Key Words: Intellectual disability, decentralization, levels of living, normalization, social welfare, special schools, specialeducation, categorization, classification. Language: Swedish (with a summary in English). Address: Department of Social Work, Göteborg University, Box 720, SE 405 30 Göteborg.Distribution: Johansson & Skyttmo förlag. ISBN: 91-888 14 51-3 ISSN 1401-5781The basic issue in this dissertation is the municipalization of the special school and care services. The main objective is to describe and analyse the consequences this local authority take-over has had on the intellectually disabled persons and their living conditions. Through modified levels of living studies light is shed upon the changes in living conditions for intellectually disabled children, adolescents and adults in the county of Halland. In comparison with the rest of the population, intellectually disabled persons had worse living conditions in all areas when the municipalization was carried through in 1991 and these conditions had only changed marginally up till 1995. In the dissertation, levels of living studies are discussed as a way of defining and measuring the disability ideological principle known as normalization. Since intellectually disabled persons have not obtained equal living conditions with the rest of the population, normalization has not been reached. During the work with the study on the consequences of municipalization, it was observed that the number of pupils in special schools had increased considerably. This lead to a qualitative interview study with 20 parents to children registered as so-called individually integrated pupils on their experiences of the special school registration. From the experiences of these parents an analysis is made of the expansion of the special school as a sign of increased social categorization of pupils with difficulties at school mainly due to lacking resources in comprehensive school. Simultaneously with the reduction of resources in school a boom has taken place for biological and individual explanations to children's school-related difficulties, which strengthens the categorization process. The increased registration into special school may be seen as a disability-creating process with consequences both to individuals and to school in general

Enkätstudie i landets kommuner

Sverige är ett mångkulturellt samhälle. Efter att länge ansetts som ett av världens mest etniskt homogena länder har vi under de senaste 40 åren omvandlats till ett mångkulturellt och pluralistiskt samhälle. För de invandrare och flyktingar med familjer som kommit till Sverige har det varit förknippat med betydande utmaningar att komma till ett nytt land och anpassa sig till det svenska samhället. Att assimilera sig till nya förhållanden, språkliga och kulturella, och samtidigt förhålla sig till sitt ursprung är en balansgång. Att dessutom ha en funktionsnedsättning eller ha ett barn med funktionsnedsättning kan betraktas som speciella svårigheter. Denna särskilda utsatthet, att både ha ett annat etniskt ursprung och ha ett funktionshinder, kan ses som en dubbel utsatthet. (Hämtat från avslutande kommentarer