Intellectual Disabilities In Sweden Research Articles

Labor market participation in people with intellectual disability – a follow-up study in Sweden

Abstract Background Work is vital to people’s health and quality of life. The Convention on the Rights of Persons with Disabilities affirms the right to work on an equal basis with others including an opportunity to earn a living by work, but evidence shows that people with intellectual disability (ID) are at greater risk of unemployment and social exclusion. Due to the lack of comprehensive data for longitudinal follow-ups, information on long-term labor market participation (LLMP) in people with ID is scarce. This study aimed to investigate factors of importance for LLMP in individuals with ID in Sweden. Methods The study was based on data from the upper secondary school for pupils with ID between 2001 and 2020 (N = 26,905) and from the longitudinal integrated database for health insurance and labor market studies. A sample of gainfully employed in 2011 (n = 2,719), was followed with respect to LLMP until 2020. Odds ratios (ORs) with 95% confidence intervals (CI) for associations between educational, sociodemographic, and work factors and LLMP (i.e. gainful employment throughout the follow-up), were estimated stratified on sex. Results LLMP was twice as likely in men compared with women, OR 2.06 (1.78-2.58) as was work in the private sector. Factors of significance for LLMP in men and women alike were: completed national education program, OR 3.40 (3.06-3.86) and OR 2.91 (2.40-3.54), parents’ education; compulsory school in mothers’, OR 1.22 (1.06-1.41) and 1.24 (1.00-1.55) and in fathers’ OR 1.35 (1.17-1.56) and 1.49 (1.20-1.85), while municipality of residence was significant only in men, OR 1.30 (1.10-1.56). Conclusions Public health prevention for disadvantaged groups requires accurate and up-to-date knowledge. Using unique register-based data, this is the first study on LLMP in people with ID in Sweden. Knowledge on what social determinants may strengthen LLMP is important since limited LLMP increases the risk of missing out on health benefits that employment may offer. Key messages • There was a significant gender difference in long-term labor market participation in people with intellectual disability in Sweden. • There is a need for increased knowledge on what social determinants may strengthen long-term labor market participation in people with intellectual disability.

Reading acquisition among students in Grades 1-3 with intellectual disabilities in Sweden.

This study investigates the reading performance of younger students with intellectual disabilities to gain insight into their needs in reading education. Participants were 428 students in Grades 1 to 3 in Sweden. They performed LegiLexi tests measuring pre-reading skills, decoding and reading comprehension based on the model of Simple View of Reading. Results demonstrate a great variation in reading acquisition among students. Some students are able to decode single words and read shorter texts with comprehension already in Grade 1. Other students still struggle with learning letters and developing phonological awareness in Grade 3. According to their longitudinal data over grades, results show that most students progress in pre-reading skills, decoding, and reading comprehension. Hence, assessing reading skills among students with intellectual disabilities in Grades 1-3 using tools aligned with the Simple View of Reading seems applicable and informative for teachers. This study underscores the significance of informed instructional practices for empowering these students in reading education.

Who Counts as a Sexual Subject? The Impact of Ableist Rhetoric for People with Intellectual Disability in Sweden

IntroductionThe ableist rhetoric around sexuality in disability services and beyond can hinder subjective sexual expression and have a powerful impact on health, self-esteem, and everyday life through internalized ableism, structural marginalization, and interpersonal discrimination. The aim of this study was to explore the ableist rhetoric of sexuality and its impact on sexual scripting for people with intellectual disability.MethodsA thematic analysis was carried out on data generated through ethnographic fieldwork at five sheltered accommodations and semi-structured interviews with ten individuals with intellectual disability.ResultsThe results show that people in Sweden with intellectual disability are desexualized within a moral order that is maintained in post-institutional social care. Through this moral order, which is deeply embedded in an ableist rhetoric about sexual relationships, sexual scripting for disabled people is constrained both inside post-institutional social care initiatives, and in the broader community of “ableist environments.” In response, disabled people employ various strategies of resistance.ConclusionsA rhetoric of positive sexuality should be a guiding principle for successfully supporting the development of sexual agency on each individual’s own term.Policy ImplicationsWe conclude by encouraging the development of initiatives that will empower and support people with intellectual disability to learn about their sexual rights and to find solutions that allow for development of sexual agency and subjectivity.

The preparation for entry into adulthood - supported decision-making in upper secondary school for students with intellectual disability

ABSTRACT The upper secondary school for individuals with intellectual disability should prepare for an adult life as an active citizen with great self-determination and participation in democratic decision-making processes. The extent to which and in what way the schools work to prepare the students and develop their skills are likely of great importance for the students’ adult life. The purpose of the study was to increase the knowledge of how students with intellectual disability in Sweden are prepared for adulthood, with special focus on self-determination. Case studies on three schools were carried out through observations of decision-making processes and interviews with students and staff. The main findings consist of three different approaches to self-determination for students with intellectual disability: ‘Targeted and Conscious’, ‘Forward with Uncertainty’ and ‘Braking and Protecting’. Increased knowledge about, and analyses of, the processes that take place when young people with reduced decision-making capacity, due to intellectual disability, make decisions with the support of others are important. Implications underline the need to strengthen the awareness, knowledge and support of school staff when it comes to strengthening students’ decision-making capacity. The students with intellectual disability need to be equipped for a society where they as adults will be surrounded by choices and expectations of making decisions.

The Use of Restrictive Measures in Community Services for People With Intellectual Disabilities in Sweden

AbstractBackgroundCommunity services for Swedish people with intellectual disability (ID) are intended to support self‐determination and integrity. Legislation does not allow the use of restrictive or coercive measures.AimThe aim of this study is to identify the extent of, rationale for, and strategies staff believe would reduce the use of restrictive measures in group homes and daily activities services for people with ID.MethodA survey was sent to all staff in group homes and daily activities in one large Swedish municipality. The survey comprised four Likert style questions and one free text question, addressing the type of and reasons for restrictive measures, and how much staff value their replacement. A total of 250 surveys were completed.ResultsA third of staff reported that some restrictive measures were used daily or weekly, primarily to protect and support service users. Adequate numbers of staff, better service design, and training were considered necessary for change.ConclusionStaff report structural reasons, such as staffing, resources time, lack of training, and supervision for using restrictive measures. Staff see reducing the use of restrictive measures as requiring structural changes with engagement from the whole organization.

Cancer risk in individuals with intellectual disability in Sweden: A population-based cohort study.

A knowledge gap exists about the risk of cancer in individuals with intellectual disability (ID). The primary aim of this study was to estimate the cancer risk among individuals with ID compared to individuals without ID. We conducted a population-based cohort study of all children live-born in Sweden between 1974 and 2013 and whose mothers were born in a Nordic country. All individuals were followed from birth until cancer diagnosis, emigration, death, or 31 December 2016 (up to age 43 years), whichever came first. Incident cancers were identified from the Swedish Cancer Register. We fitted Cox regression models to calculate hazard ratios (HRs) and 95% confidence intervals (CIs) as measures of cancer risk in relation to ID after adjusting for several potential confounders. We analyzed ID by severity, as well as idiopathic ID and syndromic ID separately. We performed a sibling comparison to investigate familial confounding. The study cohort included a total of 3,531,305 individuals, including 27,956 (0.8%) individuals diagnosed with ID. Compared with the reference group (individuals without ID and without a full sibling with ID), individuals with ID were in general more likely to be male. The median follow-up time was 8.9 and 23.0 years for individuals with ID and individuals without ID, respectively. A total of 188 cancer cases were identified among individuals with ID (incidence rate [IR], 62 per 1,000 person-years), and 24,960 among individuals in the reference group (IR, 31 per 1,000 person-years). A statistically significantly increased risk was observed for any cancer (HR 1.57, 95% CI 1.35-1.82; P < 0.001), as well as for several cancer types, including cancers of the esophagus (HR 28.4, 95% CI 6.2-130.6; P < 0.001), stomach (HR 6.1, 95% CI 1.5-24.9; P = 0.013), small intestine (HR 12.0, 95% CI 2.9-50.1; P < 0.001), colon (HR 2.0, 95% CI 1.0-4.1; P = 0.045), pancreas (HR 6.0, 95% CI 1.5-24.8; P = 0.013), uterus (HR 11.7, 95% CI 1.5-90.7; P = 0.019), kidney (HR 4.4, 95% CI 2.0-9.8; P < 0.001), central nervous system (HR 2.7, 95% CI 2.0-3.7; P < 0.001), and other or unspecified sites (HR 4.8, 95% CI 1.8-12.9; P = 0.002), as well as acute lymphoid leukemia (HR 2.4, 95% CI 1.3-4.4; P = 0.003) and acute myeloid leukemia (HR 3.0, 95% CI 1.4-6.4; P = 0.004). Cancer risk was not modified by ID severity or sex but was higher for syndromic ID. The sibling comparison showed little support for familial confounding. The main study limitations were the limited statistical power for the analyses of specific cancer types, and the potential for underestimation of the studied associations (e.g., due to potential underdetection or delayed diagnosis of cancer among individuals with ID). In this study, we found that individuals with ID showed an increased risk of any cancer, as well as of several specific cancer types. These findings suggest that extended surveillance and early intervention for cancer among individuals with ID are warranted.

Exploring Co-Production in Residences with Special Services for Children and Adolescents with Intellectual Disability in Sweden

In Sweden, children and adolescents with intellectual disability in special residences often have complex support needs. In this study, co-production refers to when and how staff in special residences and children and adolescents living there interact to promote support that enhances their participation in everyday life according to their desires and needs. The study explores staff experiences of the conditions for co-producing individual support at special residences for children and adolescents with intellectual disability. Qualitative content analysis was used to analyze focus group interviews with residential staff. The analysis identified three generic categories: establishment of a structured context, continuous individual support development, and influencing factors for co-production. A key finding derived from the generic categories was that the conditions for co-produced support are impeded by communication barriers between staff and children/adolescents. Practical implications and future research are discussed.

Tensions between risk, coping and support: young people with intellectual disability in Sweden and Internet-related support

Young people with intellectual disability seem to be more vulnerable on the Internet than youth in general. Therefore, it is important to investigate not only their strategies for managing negative online experiences but also how they experience Internet-related support. This study applies a qualitative and interpretative approach drawing on individual and pair interviews with pupils in upper secondary special programme schools in Sweden. A thematic analysis resulted in the following themes: ‘a lesson to be learned’, ‘the important role of siblings’, ‘the dilemma of support’ and ‘negotiation of control’. With regard to negative online experiences, strategies for managing privacy, safety and risky situations are understood as problem-focused coping and efforts to manage external/internal demands. The central role of social networks is emphasised with regard to Internet-related support. It is concluded that online restrictions may discourage open dialogue. A perspective of positive risk-taking, focusing on opportunities rather than risks, is advocated. Points of interest This article investigates the participants’ perspectives in their own words. The key contribution of the paper is finding out how young people with intellectual disability in Sweden handle negative online experiences and how they experience Internet-related support. The study highlights a range of themes from lessons learned and sibling relationships to problems of support and control that reflect many social and individual characteristics. The participants use different coping strategies to handle negative online experiences. They seem to manage privacy and safety on their own and refuse control in risky situations. With regard to Internet-related support, the participants prefer turning to their social network (family and friends) rather than public authorities (teachers in school). This type of research is important because it focuses on young people with intellectual disability and their vulnerability online as well as the development opportunities for Internet-related support.

In between special needs teachers and students: paraprofessionals work in self-contained classrooms for students with intellectual disabilities in Sweden

ABSTRACT Based on street-level bureaucracy, this study investigates the paraprofessional role and assignments in self-contained classrooms for students with intellectual disabilities in Sweden. The research design contains a mixed method approach using a digital questionnaire for paraprofessionals (N = 60) and semi-structured interviews with four special teachers and five paraprofessionals. The results demonstrate that paraprofessionals cooperate with special needs teachers and have a supportive role working with students throughout the day. A lack of support for paraprofessionals’ professional development and few opportunities for them to co-plan, co-teach and co-assess with special needs teachers is said to hinder this advancement. The complexity of being both an educator in the classroom and a caregiver taking the responsibility for students’ wellbeing, peer-to-peer relations and care orientated work tasks are discussed.

The arts: a precious part of special education? How principals value and organise arts education in compulsory school for pupils with intellectual disability in Sweden

ABSTRACT The intersection of arts education and special education as a field has been described as lacking in unity, partly because the practices of its different stakeholders are embedded in either special education or arts education. This paper investigates how principals prioritise teachers’ qualifications when organising arts education in compulsory school for pupils with intellectual disabilities (CSID) in Sweden, what they perceive the value of arts education in CSID to be and how they organise arts education in relation to cooperation between pupils from CSID and compulsory regular school (CRS). These questions were investigated using a questionnaire, which was answered by 124 principals. The results show that around three times as many principals prioritised specialised arts knowledge over competence in special education. However, the degree to which this occurred varied across arts subjects. A majority of the principals valued arts education for the opportunities it offers pupils to develop generic abilities, such as communication skills, creativity, and imagination. Cooperation between CSID and CRS for arts education appeared to depend on how school leadership was organised. The article concludes with suggestions on how the organisation of arts education could be improved in relation to the two areas of expertise and the idea of inclusion.

Social service utilisation in relation to class setting - a longitudinal study among children with mild intellectual disability in Sweden

ABSTRACT The aim of this study was to investigate if the type of class setting is related to the utilisation of disability-related services and child welfare services outside school over time among children with mild intellectual disability (ID). A quantitative study with a longitudinal and comparative design was carried out including data from archival records concerning service utilisation among 405 children. Children in special classes were more likely than children integrated into regular classes to utilise disability-related services. Integrated children who changed school setting from regular classes to special classes were more likely to begin to utilise such services and to increase the number of services utilised, compared to children who remained integrated. Professionals in social services and schools may need to improve their collaboration around families of children with mild ID when assessing needs and providing services. Special attention may need to be devoted to children integrated into regular classes.

Staff Under New Market Rules: A Case Study of a Group Home for People with Intellectual Disabilities in Sweden

The Swedish caring services have transformed from a public-operatedto a market-inspired contract system. This pilot case study of a grouphome explores what the shifts of contractor entail for staff ...

Legitimacy and ambiguity: institutional logics and their outcome for people with intellectual disabilities

Organisations providing services for people with intellectual disabilities operate within a context of legal, moral, and institutional frameworks. This article uses an institutional framework to analyse two types of welfare organisations for people with intellectual disabilities in Sweden: inclusive education and disability arts. These two empirical cases show that because disability organisations operate at the intersection of different institutional spheres, their aims and activities are subjected to differing, and at times conflicting, expectations. Using an institutional framework helps to identify the influence of conflicting logics and external roles on the daily encounters that professionals have with people with intellectual disabilities. The findings raise ethical considerations about the moral status of people with intellectual disabilities in contemporary society.

Self-advocacy for people with intellectual disability in Sweden – organizational similarities and differences

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.

Guardianship for Adults with Intellectual Disabilities: Accountant, Advocate or ‘Family’ Member?

The overarching aim of this study is to explore guardianship in terms of its impact on daily lives of adults with intellectual disabilities in Sweden. Based on qualitative interviews, the article focuses on the expected and actual role of limited guardians for people with intellectual disabilities in the context of Swedish laws. Our findings show that the legal definition of limited guardianship is unclear and that this lack of clarity, among other dilemmas, creates conflict among clients, guardians, relatives, professionals and care workers. The guardian may be expected to act as an accountant, a legal advocate, or even a surrogate family member. The result is consistent with previous research in other countries on the consequences of guardianship. The current legislation on limited guardianship is in need of amendment in order to avoid legal uncertainty and ambiguity among clients and their support network.

New Em@ncipatory Landscapes? Young People With Intellectual Disabilities, Internet Use, and Identification Processes

Although research on young people’s identification processes on the Internet is a growing field, few studies illustrate conditions for young people with intellectual disabilities (ID). Previous studies have shown that young people with ID are worried about being marginalized, and that many in fact are lonelier than other young people. Internet and social networking sites might be of vital importance as a space for exploring alternative and less stigmatized identities. This article reports findings from individual interviews with 27 young people with ID in Sweden. The transcribed interviews were analyzed using a thematic content analysis. A prominent finding concerned the informants being well aware of both risks and opportunities using Internet and Social Networking Sites. Consequently, the more they interacted with non-disabled peers, the more they experienced negative consequences of Internet use. These circumstances rather lead to downsizing than upsizing Internet use, and less participation on Social Networking Sites. The experiences of the informants are discussed in a conceptual framework of social identity, participation, and emancipation. We recommend that social work practitioners reflect upon the ways that support can be arranged in order to empower young people with ID to participate on the Internet.

Mortality patterns and risk among older men and women with intellectual disability: a Swedish national retrospective cohort study

BackgroundSweden has closed all institutions and imposed legislation to ensure service and support for individuals with intellectual disability (ID). Understanding mortality among older individuals with ID is essential to inform development of health promotion and disease control strategies. We investigated patterns and risk of mortality among older adults with ID in Sweden.MethodsThis retrospective cohort study compared older adults aged 55 years and older with ID with a control population. Participants were followed during 2002–2015 or death, and censored if they moved out of Sweden. Individuals with ID were identified from two national registers: one covering all specialist health-care visits (out-patient visits and hospitalisation) and the other covering people accessing social/support services. Individuals with ID (n = 15,289) were matched with a control population by sex, birth year, and year of first hospitalisation/out-patient visit/access to LSS services. Cause-of-death data were recorded using International Classification of Diseases, Tenth Revision. Cox proportional hazards regression were conducted to assess if overall and cause-specific mortality rate among individuals with ID was higher than in the Swedish population.ResultsThe overall mortality rate among individuals with ID was 2483 per 100,000 people compared with 810 in the control population. Among those who died, more individuals with ID were younger than 75 years and unmarried. Leading causes of death among individuals with ID were circulatory diseases (34%), respiratory diseases (17%) and neoplasms (15%). Leading causes of death in a sub-sample with Down syndrome (DS) were respiratory diseases (37%), circulatory diseases (26%) and mental/behavioural disorders (11%). Epilepsy and pneumonitis were more common among individuals with ID than controls. Alzheimer’s disease was common in the control population and individuals with DS, but not among those with ID when DS was excluded. Individuals with ID had a higher overall mortality risk (hazard ratio [HR] 4.1, 95% confidence interval [CI] 4.0–4.3) and respiratory disease death risk (HR 12.5, 95% CI 10.9–14.2) than controls.ConclusionOlder adults with ID in Sweden carry a higher mortality risk compared with the general population, mainly attributable to respiratory, nervous and circulatory diseases. Care for this group, particularly during the terminal stage of illness, needs to be tailored based on understanding of their main health problem.

“I’m too old to think five years ahead”. Parent carers of adult children with intellectual disabilities in Sweden

In Sweden, most adult people with intellectual disabilities live in group homes. Independent living and independence are highly valued in Swedish politics. Yet there are also parents who live with their adult ‘children’ with intellectual disabilities. This article analyses eight parents’ stories about living with their adult children with intellectual disabilities. They discuss their daily lives and future thoughts concerning their children's living situation. The analysis is conducted from a perspective in which age is seen as a social practice and power structure. The parents in this study violate several norms through their choices. Their daily lives continue to be characterized by the adult children's needs and activities. The parents are aging and the adult children get older, but household chores and responsibilities continue to be distributed in the same way. There is risk that the co-living of parents and adult children will entrench an age structure in which parents are ascribed “eternal” adulthood, never transitioning into old age, while the child remains in “eternal” adolescence.

Perceived needs among parents of children with a mild intellectual disability in Sweden

Parents of children with a mild intellectual disability experience more distress and require more support than other parents. The aim was to investigate the perceived family needs of parents of children with an MID and to investigate the relationship between parents’ perceived self-efficacy in their parental role and in collaborating with professionals as well as with their perceived needs for support. Interviews were based on questionnaires to the parents of 38 children. The results revealed that parents perceived need for information, respite, and venues in which to meet other parents in similar situations. The informational needs were related to parental self-efficacy and obtaining support. A lower need for information was related to higher perceived control over services. In conclusion, it appears that professionals need to work to strengthen parents’ ability to ask for support and to express the needs. Well-informed parents will develop stronger parental self-efficacy and perceived control over services.

Prevalence of older people with intellectual disability in Sweden: a spatial epidemiological analysis.

The expected increase in longevity of individuals with intellectual disabilities (ID) in many countries of the world is a direct result of medical and social advances, which have also extended the longevity of the general population. It is important to assess the need for social services for people with ID across different administrative levels to ensure sufficient resources are allocated to where they are most needed. This study estimates the annual prevalence of older people with ID from 2004 to 2012 and in different counties and municipalities in Sweden, by sex and age group; identifies proxy indicators related to the care of older people with ID in different counties in 2012 in Sweden and analyses the spatial distribution and clustering of municipalities with a high prevalence of older people with ID. Individuals with ID were identified through the national register based on the Swedish Act concerning Support and Service for Persons with Certain Functional Impairments (the LSS act) and the national death register. This study focuses on older individuals aged 55+ during the period of 2004-2012. The estimated prevalence was calculated at the county and municipality level and plotted on a municipality-level map. Moran's I statistics was used to identify any spatial clustering of municipalities with a large number of individuals with ID. The prevalence of ID among older individuals aged 55+ in Sweden increased from 2004 to 2012. The prevalence was consistently higher among men, and the gender gap increased slightly in recent years. Age-specific prevalence estimates showed ID to be higher in younger age groups, and the gender gap decreased in older age groups. The prevalence was higher in northern counties in Sweden (over 500 individuals per 100 000 population aged 55+). Higher prevalence areas were clustered in northern municipalities, whereas municipalities with high prevalence of older individuals with ID in the middle and southern regions of Sweden demonstrated a more widespread distribution. The existence of clusters of counties with a high prevalence of older individuals with ID necessitates further assessment of how resources have been allocated to different counties and municipalities in Sweden. Investigations of the quality of social services provided to individuals with ID across different counties in Sweden are warranted. It is important to ensure that high quality supports are being provided to older individuals with ID in order to grant them the same right to healthy ageing as their counterparts living without ID throughout their life course.