Intellectual Disabilities In Sweden Research Articles

Education and support for people with intellectual disabilities in Sweden: policy and practice

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.

Factors influencing participation by preschool children with mild intellectual disabilities in Sweden: with or without diagnosis

This article analyses the conceptualisation of mild intellectual disability and developmental delay in young children in Sweden, particularly in regard to children's participation and possible stigmatisation in preschool. A diagnosis of intellectual disability is more likely to ensure that preschool staff received targeted external support. However, children with or without a diagnosis can exhibit the same functional problems. Current research in the area suggests that a diagnosis itself will not guarantee that external support is provided for the child. Nor does a diagnosis always lead to stigmatisation. Research indicates that the manner in which special support is delivered may contribute to stigmatisation. The current provision of special support can mean that a child does not participate in the same activities as other children, when ideally special support should facilitate participation in the same activities as others. Other means to identify children for targeted support may be necessary in order to provide targeted services earlier.

Working life for middle-aged people with intellectual disabilities: knowing their rights?

Within disability research, studies have generally focused on either young adults or older people with intellectual disabilities. The in-between age group (adulthood and middle age) has rarely been of interest. The purpose of this article is to describe and discuss middle-aged adulthood in relation to work, as experienced by people with intellectual disabilities in Sweden in 2010. The methodology is empirically grounded in semi-structured, qualitative interviews with seven men and six women in long-term receipt of disability services. The findings show that work was the hub around which participants’ lives were organised and given meaning. However, the work situation can be seen as paradoxical. Even though Swedish disability policy gives people with disabilities extensive legal rights, those who might benefit are not always aware of policies, nor do they always make claims on that support. For middle-aged people with disabilities, marginalisation influences the opportunities to share and talk about experiences of life events, and to formulate lifestyle plans. As the capacity for a person to claim entitlement or make plans is dependent on social interaction and available interpretative frameworks, the challenge for service providers and others involved in the daily lives of people with intellectual disabilities is to encourage capacity-building to enable such choices and claims of rights to be exercised.

Young adults with intellectual disabilities in Sweden: power, self-determination, and self-organisation in everyday life

Sweden has been one of the countries at the forefront of policymaking for people with intellectual disabilities worldwide. Culminating in the 1994 Swedish LSS Act (Act Concerning Support and Service for Persons with Certain Functional Impairments), the aim of Swedish policy has been to ensure good living conditions and self-determination for people with intellectual disabilities. The primary purpose of this article was to explore Swedish research on the implementation of disability policies, and the extent to which the control that people with intellectual disabilities have over their everyday lives has changed as a result of these forward-looking policies. Swedish research that focuses on self-determination and was published within the last two decades was reviewed. Findings of the study have been drawn from 11 dissertations and 5 articles. As far as the author is aware, this is the first time these findings have been made available to a non-Swedish-speaking audience. Research reviewed included outcomes relating to self-determination arising from the process of deinstitutionalisation for residents of group homes and in individualised service planning. Results of the study have highlighted a gap between policy aims and service provision, which is similar to that described by scholars elsewhere; and that people with intellectual disabilities have limited influence over the decisions that affect their lives. The final section of the article discusses possibilities for increased self-determination arising from the self-organisation by people with intellectual disabilities, and new directions in self-advocacy that are emerging in Sweden.

Understanding the Implementation Process of a Multi-Component Health Promotion Intervention for Adults with Intellectual Disabilities in Sweden.

There is a need to better understand implementation processes of health interventions. This study describes the implementation of a multicomponent intervention to improve diet and physical activity amongadults with intellectual disabilities, viewed from the perspectives of staff and managers. All health ambassadors (n=12), appointed among staff and managers (n=5) taking part of a health intervention in community residences in Sweden, were interviewed with a focus on barriers and facilitators regarding implementation of the intervention. Data were analysed using content analysis. The overarching theme describes the importance of supporting motivation for change among managers, caregivers and residents. The experiences of the implementation process are described in four main categories: intervention characteristics, individual commitment, organizational capacity and societal factors. The implementation can be facilitated by a programme meeting perceived needs, a flexible and participatory approach, external input and an extensive preparation phase.

The Importance of Structured Text Talks for Students’ Reading Comprehension

(ProQuest: ... denotes non-US-ASCII text omitted.)...AbstractThe present intervention study reveals that students diagnosed with an intellectual disability (ID) are able to construct meaning from written expository text through guided social interaction. There were 31 students recruited from four special schools participating in this intervention study. The study involves a pre-test phase and a post-test phase. The students were divided into two intervention conditions: (a) reciprocal teaching (RT), which involved practice in four reading strategies-prediction, question generating, clarification, and summarisation-and (b) inference training (IT), which involved practice in answering inference questions, i.e., where you have to read between the lines to find the answer. The training included 16 sessions over 8 weeks. Pre- testing and post-testing included seven tests. Improvement of test results was obtained in both conditions to about the same extent, indicating that both conditions were beneficial.Keywords: structured text talk, reciprocal teach- ing, inference training, reading comprehension, intellectual disabilityIntroductionGreat efforts have been made to improve the life quality and social inclusion of students with intellectual disability (ID). One important aspect of the social inclusion and quality of life is literacy (1, 2).Nevertheless, literacy has not been taken into account to any great extent to empower students with ID in Sweden. As demonstrated in a Swedish report, efforts to promote reading comprehension instruction have been limited. Instead,the social, emotional, and esthetical dimensions of education have had the highest priority (3). The report also critiqued that many teachers in special schools lacked appropriate qualifications such as formal training in special education.Research has demonstrated that reading in general and text comprehension in particular have been identified as challenging skills for students with ID, who usually do not achieve the level of their chronological and educational peers(4, 5). However, there is reason to believe that their cognitive potential is often seriously underestimated and that students with an ID may have the unexpected capacity to understand written text if they are given proper stimulation and instruction (2, 6, 7). Some of these researchers have used different instructional programmes in reading comprehension built within a sociocultural paradigm (8-10).Literature reviewTwo instructional programmes in reading comprehension have proven to be successful for readers with ID. The two programmes are reciprocal teaching (11) and inference training (12, 13).Reciprocal teaching(11) is a widely used technique for systematic text talks for promoting reading comprehension. Reciprocal teaching (RT) refers to an instructional activity that takes place in the form of a dialogue between teacher and students regarding segments of text. The teacher and students take turns assuming the role of teacher in leading this dialogue. RT is thus a group activity in which students read a passage of an expository text paragraph by paragraph. During the reading, the students acquire and practice four reading comprehension strategies:1. Prediction occurs when students hypothesise what the author will bring up next in the text. In order to do this successfully, students must activate the relevant background knowledge that they already possess regarding the topic. Furthermore, the opportunity has been created for the students to link the new knowledge they will encounter in the text with the knowledge they already possess.2. Generating questions. When students initiate questions, they first identify the kind of information that is significant enough to provide the substance for a question. Then, they pose this information in question form and self-test to make sure that they can indeed answer their own questions. …

“Hip to be Crip?” About Crip Theory, Sexuality and People with Intellectual Disabilities

This article examines the value of using Crip Theory by investigating what is considered normal sex life for people with intellectual disabilities in Sweden. By combining Crip Theory with Gagnon and Simon’s sexual scripting theory, it concludes that Crip Theory can be of use for researchers and activists, and also suitable for educating staff members, in that it questions sexual norms that are most often taken for granted. However, due to the fact that research or activism inspired by Crip Theory seldom includes intellectual disabilities, its usefulness is limited, and more work is needed to solve problems surrounding agency, stigma and visibility.

Doing adulthood through parenthood: Notions of parenthood among people with cognitive disabilities

Perspectives on reproduction and developmental disabilities are gradually changing in Sweden. Through this change parents with developmental disabilities are gradually being included within an emergent discourse of “good enough parenting” on certain conditions. The present article explores discourses of reproduction and parenting among adults with developmental disabilities in two Swedish contexts: in a Swedish magazine, “Empowerment”, produced by and aimed at adults with autism, and interviews with people with intellectual disabilities in Sweden. Common to the materials from both studies are a normative reprosexual discourse of parenting and an underlying assumption that parenthood relates to adulthood in the sense that it requires maturity. The stories in the magazine “Empowerment” can be seen as expressing an emergent counter-hegemonic conditional discourse of “good enough parenting” which regards some people with autism as “good enough” parents. In general terms, the stories about parenting in the interview study depict parenting as related to age awareness and, unlike what is found in the material from “Empowerment”, there is no discussion of or reflection on whether or how impairment affects one's opportunity/ability to become a parent.

Pregnancy and birth outcomes of women with intellectual disability in Sweden: a national register study

Objective. To investigate the antenatal health and demographic factors as well as pregnancy and delivery outcomes in women with intellectual disability (ID) in Sweden. Design. A population-based register study. Setting. The National Patient Register (NPR) linked to the Medical Birth Register (MBR). Sample. Women with ID classified as International Classification of Diseases (ICD) 8–10 who gave birth in 1999–2007 (n = 326), identified from the NPR linked to the MBR, were compared with all first-time, singleton mothers without ID or any other psychiatric diagnoses during this period in Sweden (n = 340 624). Methods. Population-based data were extracted from the NPR and the MBR. Main outcome measures. Health and socio-demography at first antenatal visit, mode of delivery, pain relief during labor, preterm birth and discharge from hospital. Results. A higher proportion of women with ID were teenagers (18.4 vs. 3.3%), obese (20.1 vs. 8.6%) and single (36.6 vs. 6.2%) compared with women without ID, and women with ID smoked more often (27.9 vs. 7.9%). Women with ID had more often a preterm birth (12.2 vs. 6.1%), a cesarean section (CS) (24.5 vs. 17.7%) and used less nitrous oxide as pain relief during labor (59.5 vs. 75.8%). Women with ID had a higher risk for preterm birth [odds ratio (OR) 1.68], CS (OR1.55), non-use of nitrous oxide (OR 1.89) and discharge from hospital to a place other than home (OR 2.24). Conclusion. Pregnant women with ID should be considered a risk group suggesting that better tailored pre- and intrapartum care and support are needed for these women.

‘I know, I can, I will try’: youths and adults with intellectual disabilities in Sweden using information and communication technology in their everyday life

This study introduces how technology and humans are part of relationships that influence agency among people with disabilities. It aims to focus attention on the use of, and access to, information and communication technology (ICT), and agency among youths and adults with intellectual disabilities. The study draws on empirical research conducted with youths and adults with intellectual disabilities, as well as staff at a day centre. It shows that by drawing upon interests, previous experiences, and cooperating in ICT activities the participants’ agency changed. Also, it shows how disability is relational and how it can be influenced by ICT. An interdisciplinary approach is adopted to interpret the findings and to explore: How do people of different ages with intellectual disabilities experience the use of ICT in their everyday lives? Are people with intellectual disabilities able to influence their level of activity by using ICT? And if so, in what ways?

‘No no, you cannot say that!’ Perceptions and experiences of parents of preschool children with intellectual disabilities in Sweden

Using semi-structured interviews this study investigated the personal experiences of parents of pre-school children with intellectual disabilities within the Swedish social support system. Thirteen parents of 10 children participated. Interview transcripts were qualitatively analysed using interpretative phenomenological analysis. Three themes emerged: orchestrating formal support; early intervention; and informal support. Parents described orchestrating different organisations within the formal support system and thinking through how they articulated their needs in order to obtain desired supports. Syndrome specific parental groups provided information which parents used to obtain support from the municipality and/or habilitation. The importance of adapting early intervention to both child and family needs is highlighted. The implications of these findings from a family-centred perspective are discussed.

Expectations of and reactions to disability and normality experienced by parents of children with intellectual disability in Sweden

Much research has been devoted to the emotional burdens of having a child with intellectual disability (ID), but very little of this has focused on the burdens imposed by negative public attitudes towards disability. Adjustment has primarily been thought of as adjustment to the actual disability rather than adjustment to attitudes or prejudices towards disability. The aim of the present study was to study expectations of and reactions to disability and normality experienced by parents of children with ID in their everyday life in Sweden. Do the parents relate to the tragedy discourse and, if so, how? Do parents relate to other expectations and disability discourses and, if so, how? What subject positions do the discourses offer? The analysis was based on 17 semi-structured interviews with nine fathers and eight mothers of nine children with different IDs. The children were newly diagnosed and were from 6 months to 5 years of age. Four discourses (tragedy and the lived experience, tragedy and the outsider perspective, the clinical gaze and the super-parent ideal) and subject positions relating to these discourses are discussed. The results of this study show that parents of young children with disabilities relate to a wide range of social processes and practices, which could be thought to affect their emotional well-being and parental identity negatively.

Belonging and multidimensional self-expectations

Dans cet article, nous passons en revue les recherches actuelles – dont certains de nos propres travaux – sur le passage de l’école à la vie active chez les jeunes ayant des déficiences intellectuelles en Suède. Nous avons identifié deux options principales de transition. La première est une introduction dans le système des besoins particuliers en matière d’emploi et d’activité professionnelle au sein de l’État providence suédois, la suite du programme des besoins particuliers dont les élèves avec des déficiences intellectuelles bénéficient en Suède. La seconde option comprend des niveaux d’aspiration et des appartenances plus complexes, aussi bien dans le système des besoins particuliers que dans la vie et la vie active plus ordinaires. La description de ces deux options s’inspire des recherches et de la politique d’aide sociale actuelles. Plus précisément, nous nous appuyons sur les développements théoriques récents, relatifs aux concepts tels que identifications multidimensionnelles et identités mixtes dans les domaines de la migration internationale et des relations ethniques.

Public Special Services Provided to People With Intellectual Disabilities in Sweden: A Life‐Span Perspective

ABSTRACTThis study describes public special services, support, and health care provided to an administratively defined county sample of people with intellectual disabilities from early childhood to adult age. Comparisons were made on the variables year of birth, sex, and assessed level of intellectual disabilities in 1974. Information was obtained from case files and included the period from year of birth of the participants (between 1959 and 1974) to 2005. All participants were provided public special services, support, and health care either periodically or throughout the study period. Changes in legislation were reflected in the type of services, support, and health care provided to the target group. Type and amount of special services and support were related to year of birth. Only a few differences were related to sex and level of intellectual disabilities. These results indicate that public special services, support, and health care provided to people with intellectual disabilities reflect disability policy, legislation, and professional attitudes over different periods. It is suggested that measures were tailored to meet general needs considered to be shared by all people with intellectual disabilities rather than individual choices and wishes. The interaction among professionals emerged only to a limited extent. However, deficient information in the case files does not imply absence of contact between professional groups, but, if continuity in services, support, and health care is to be attained, significant improvement in documentation is required.

Well‐being, involvement in paid work and division of child‐care in parents of children with intellectual disabilities in Sweden

The aim of the study was to compare mothers' and fathers' involvement in paid work and child-care in families of children with intellectual disability (ID) and control families and to test if differences in well-being between mothers and fathers of children with ID can be explained by differences in involvement in paid work and child-care. Mothers and fathers of 179 children with ID and 196 typically developing children answered mailed surveys on their involvement in paid work, child-care tasks and well-being. Only two-parent families were included. The results show main effects for gender of the parent and presence of a child with ID on involvement in paid work and well-being. Interaction effects indicate that mothers of children with ID are more affected than fathers in their participation in paid work and well-being. A positive relation between level of participation in paid work and well-being was found for both mothers and fathers. No difference in division of child-care tasks was found between families of children with ID and control families. Differences in involvement in paid work and child-care in families of children with ID only explained 5% of the variance in the difference between mothers' and fathers' well-being. Families with children with ID differ from control families in that the parents are less involved in paid work and have lower levels of well-being. A positive relation between involvement in paid work and well-being was found.

"Hip to be crip?"


 
 
 På senare tid har cripteoretiska begrepp och perspektiv börjat användas av både aktivister och forskare som studerar funktionsnedsättningar, framförallt i USA och England men likaså i Sverige. Begreppet ”crip” har paralleller till queer, som numera är så välanvänt och bekant i Sverige att även politiker säger sig vara ”queer”. Båda handlar om dialektiken mellan det ”normala” och det ”onormala”, med en viss skillnad på fokus. Utifrån queerperspektiv granskas dialektiken på sexualitetens område och med hjälp av cripteori fokuseras ”funktionsnedsatt” kontra ”funktionsfullkomlig”. Båda orden är från början aggressiva, poängterar cripteoretikern Robert McRuer, och har använts som skällsord och negativa tillmälen. Men genom att ta makten över ordet och göra det till sitt eget kan perspektivet vändas, och man kan omfamna sitt stigma. Då cripperspektivet hittills främst använts vid fysiska funktionsnedsättningar avser följande artikel att granska dess tillämpbarhet på sexualitet och intellektuell funktionsnedsättning. Kan cripperspektiv oproblematiskt användas även inom detta område?