Arbete och meningsfull sysselsättning är viktigt för människors inkludering i samhället och för trygga livsvillkor och utveckling. Att vara en del av arbetslivet anses vara avgörande för unga och deras etablering i vuxenlivet. Det är väl känt att deltagande i arbetslivet för den enskilde i ett livsloppsperspektiv generellt visar på ett positivt samband med faktorer såsom ekonomisk situation, social status och hälsa. För samhället är tillgången till människors olika kompetenser och deras möjlighet till självförsörjande angelägen. Alternativet till försörjning via eget förvärvsarbete är i många fall ersättning från socialförsäkringen. En grupp som historiskt sett stått, och fortfarande i betydande utsträckning står, utanför den öppna arbetsmarknaden är personer med intellektuell funktionsnedsättning (IF). Andelen personer med IF i befolkningen är knappt två procent, varav tre fjärdedelar bedöms ha lindrig funktionsnedsättning. Forskning har dock visat att en relativt liten andel av unga vuxna med IF återfinns på den öppna arbetsmarknaden men att många fler i gruppen skulle önska att ha ett förvärvsarbete, om det fanns bättre möjligheter och förutsättningar. Kunskapen om vilka faktorer som är av betydelse för att unga med IF ska komma in på arbetsmarknaden samt behålla arbetet, dvs få en varaktig och hållbar arbetsmarknadsanknytning, är mycket liten. Syftet med detta projekt var mot denna bakgrund att, utifrån studier som fokuserar på personer med IF som arbetar, identifiera faktorer som kan vara av betydelse för att främja en hållbar anknytning till arbetsmarknaden.

There is limited knowledge regarding people with intellectual disability and their occupations in Sweden. The aim of the study was to examine young adults with intellectual disability who after secondary school participate in disability day programs (daily activity), with a focus on characteristics and longitudinal analyses of movements between occupations. The study used a national register of 26,908 people with intellectual disability, of which 13,128 individuals (48.8%) participated in daily activity. The group had slightly more men than women, many had attended individual programs in school, and significant associations were found between background factors and participating in daily activity. Proportions in daily activity remained stable over time; however, some individuals transitioned to employment or no known occupation. The study presents national and longitudinal understanding, highlighting the dominance of daily activity as an occupation. Further research is needed to increase knowledge on meaningful occupations for people with intellectual disability. © The Author(s) 2024.

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 (N¼26,905) and from the longitudinal integrated database for health insurance and labor market studies. A sample of gainfully employed in 2011 (n¼2,719), 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 (2.403.54), 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.

Background: To combat discrimination, the Convention on the Rights of Persons with Disabilities mandates equal work opportunities. Individuals with intellectual disabilities engage in work spanning from competitive jobs to vocational activities. Little is known about their occupational patterns, and knowledge about how these evolve over time is lacking. This study aimed to address these gaps, using longitudinal and cross-sectional approaches.

Method: Through record linkage of Swedish population-based registers, data on intellectual disability and occupational status in 2011, 2013, 2015, 2017, and 2020 were obtained. Two cohorts were examined. Cohort 1 (individuals who left Upper Secondary School for pupils with Intellectual Disability (USSID) in 2001–2011, n = 11 704) was used to study changes in different occupational groups (daily activity, work, studies, and unknown) between 2011 and 2020. Cohort 2 (individuals who left USSID in 2001–2020, n = 26 424) was used to describe occupational patterns in 2020.

Findings: By 2020, the proportion of cohort 1 individuals in daily activity was significantly lower compared to 2011. The proportion of working individuals increased each year until 2017. Simultaneously, the proportion of students decreased. The proportion of individuals with an unknown occupation decreased until 2015. Nearly half of the cohort 2 individuals were engaged in daily activity, approximately a third were working, about 4% were studying, and around one-sixth had no known occupation in 2020.

Conclusions: Minor, yet significant, shifts in proportions were evident across all years within all cohort 1 groups compared to baseline. A positive trend emerged with a steadily increasing proportion of working individuals until 2017, suggesting that as time progresses, more individuals seem to enter the workforce. The findings can serve as a foundation for informed decisions in the pursuit of equal opportunities. However, further research is required to understand the underlying factors behind the findings. © 2024 John Wiley & Sons and MENCAP.

Background: Evidence for substance use-related problems in individuals with mild intellectual disability is sparse and mainly limited to selected psychiatric populations. We evaluated the risk of substance use-related problems in individuals with mild intellectual disability compared to the general population. Additionally, we have performed secondary sibling comparison analyses to account for familial confounding.

Methods: We conducted a population-based cohort study of individuals born in Sweden between 1973 and 2003. A total of 18,307 individuals with mild intellectual disability were compared to 915,350 reference individuals from the general population and 18,996 full siblings of individuals with mild intellectual disability. Information on mild intellectual disability and substance use-related problems was obtained from several Swedish national and regional school and healthcare registers. Substance use-related problems were measured via corresponding diagnostic and legal codes and included alcohol use disorder, drug use disorder, alcohol-related somatic disease, conviction for a substance-related crime, and substance-related death.

Results: Individuals with mild intellectual disability had a higher risk of any substance use-related problem compared to the general population (HR, 1.81; 95% CI, 1.72–1.91), both in males (HR, 1.76; 95% CI, 1.65–1.89) and females (HR, 1.89; 95% CI, 1.74–2.05). The risks of substance use-related problems were particularly elevated among individuals with mild intellectual disability and psychiatric comorbidities (HR, 2.21–8.24). The associations were attenuated in the sibling comparison models.

Conclusions: Individuals with mild intellectual disability, especially those with psychiatric comorbidity, are at an elevated risk of substance use-related problems. Familial factors shared by full siblings contribute considerably to the association between mild intellectual disability and substance use-related problems. © 2024 The Authors. JCPP Advances published by John Wiley & Sons Ltd on behalf of Association for Child and Adolescent Mental Health.

Background Intellectual disability (ID) is associated with violent and sexual offending and victimization, but the importance of neuropsychiatric comorbidity and severity of disability remains unclear. Methods In a register-based cohort study of people born in Sweden 1980-1991 (n = 1 232 564), we investigated associations of mild and moderate/severe ID with any, violent and sexual crimes, and with assault victimization, stratified by comorbid autism and attention deficit hyperactivity disorder (ADHD). We defined ID by attendance at a special school or registered diagnosis and obtained data on criminal convictions and injuries or deaths due to assaults from nationwide registers until end of 2013. Results Compared to people without ID, autism or ADHD, men and women with mild or moderate/severe ID and comorbid ADHD had elevated risks of violent crimes [range of hazard ratios (HRs) 4.4-10.4] and assault victimization (HRs 2.0-7.7). Women with mild ID without comorbidities or with comorbid autism also had elevated risks of violent crimes and victimization (HRs 1.8-4.6) compared to women without ID, autism or ADHD. The relative risks of sexual offending and victimization were elevated in men and women with ID without comorbidities (HRs 2.6-12.7). The highest risks for sexual offending in men (HRs 9.4-11.0) and for sexual assault victimization in women (HRs 11.0-17.1) related to ID and comorbid ADHD. Conclusions The elevated risk of violent offending and assault victimization in people with ID is largely explained by comorbid ADHD, whereas ID is independently associated with sexual crimes and victimization, even though absolute risks are low. Copyright © The Author(s), 2022. Published by Cambridge University Press.

Knowledge about the living conditions for people with intellectual disability (ID) is limited, not least since they constitute such a small group, which puts them at risk of being invisible in the general statistics. Thus, there is a great need of a complete register of individuals in this group.

The Swedish Halmstad University Register on Pupils with Intellectual Disability (HURPID) is the first population-based, nationwide sample of former pupils in upper secondary school for pupils with intellectual disability (n = 26 906). The aim of this presentation is to provide a description of that register.

HURPID consists of pupils who were assessed as not having the ability to reach the knowledge requirements of upper secondary school, due to ID, during the academic years of 2000/2001 – 2019/2020. The cohort was established to study the transition from school to working age and to follow the development regarding living conditions, occupational patterns, and health over time. 

School leaving certificates and corresponding documents of former pupils who attended the school form in question during the academic years of 2000/2001 - 2010/2011 were collected in 2011-2012. Information on national identification number, sex, program, municipality, graduation year and complete/incomplete degree were registered. In 2020-2022, a similar data collection was carried out and corresponding information for the academic years of 2011/2012 - 2019/2020 was added (total n = 11 077 women and 15 829 men).

So far, HURPID has been used to study occupational patterns in general (also including exploration of those not involved in employment, education, or daily activity), comorbidity, mortality, heritability, substance abuse, crime, and victimization. Future studies may, for example, examine occupational patterns over time, changes after reforms, need of support, financial situation, access to health care, comparisons with individuals with low intellectual ability (without ID), risk factors for ID and penal sanctions.

Background: Intellectual disability (ID) is a disorder with unknown aetiology in many cases. Maternal alcohol use is a known risk factor for ID, but less is known about the importance of maternal and paternal substance use disorder (SUD) and risk of ID in offspring. Methods: Data from multiple nationwide registers were used to create a cohort of children born from January 01, 1978 to December 31, 2002. All participants were born in Sweden, had available parental identification information and did not emigrate or die before age 12 (n = 1,940,820). Logistic regression modelling was performed with exposure defined as having a parent who received any SUD diagnosis, including alcohol use disorder (AUD) and drug use disorder (DUD). The outcome was registration of diagnosis of any form of ID. First, we analysed the risk of ID if parental SUD was registered prior to childbirth with stepwise adjustment of multiple covariates. Second, the effect of timing of SUD diagnosis in relation to childbirth was analysed. Findings: Of 37,410 offspring with parental SUD registered prior to birth, 3.0% (n = 1110) had any form of ID compared to 1.2% (n = 23,168) of those 1,903,410 individuals without parental SUD prior birth. Parental SUD prior birth was associated with an increased risk of any form of ID (Odds Ratio [OR]: 2.3 [2.2–2.5]), with ORs similar for maternal (OR: 2.3 [2.1–2.5]) and paternal SUD (OR: 2.3 [2.1–2.5]). These ORs were reduced but remained statistically significant after adjusting for parental education, migration, psychiatric comorbidity, and co-parent SUD (OR parental SUD: 1.6 [1.5–1.8]; OR maternal SUD: 1.4 [1.2–1.5]; OR paternal SUD: 1.6 [1.5–1.7]). Parental SUD was associated with increased risk of ID in offspring irrespective of timing of diagnosis, but if mothers or fathers were diagnosed with AUD during pregnancy (OR maternal AUD: 5.0 [3.1–8.2]; OR paternal AUD: 2.8 [2.2–3.6]), the risk was significantly greater than if the AUD diagnosis was first registered after childbirth (OR maternal AUD: 1.9 [1.8–2.0]; OR paternal AUD: 1.6 [1.6–1.7]). Interpretation: Both paternal and maternal SUD were associated with an increased risk of ID in offspring, with greatest risk observed when AUD was diagnosed during pregnancy. Possible mechanisms may involve shared genetic and environmental factors, including toxic effects from alcohol intake. These findings have clinical implications in suggesting that parental SUD in either parent represents a possibly modifiable risk factor to consider when developing prevention, diagnostics and treatment programs for children with ID. Funding: Stockholm County Council, the Research Council of the Swedish Alcohol Retailing Monopoly, Fredrik and Ingrid Thurings stiftelse, Academy of Finland, the Swedish Research Council and the Swedish Research Council for Health, Working Life and Welfare, Nordforsk by the Nordic Council of Ministers and the Polish Medical Research Agency. © 2023 The Authors

Background: Swedish employment rates are disproportionately low among people with intellectual disability and research on employment sustainability in this group is scarce. This study investigated employment sustainability among people with intellectual disability, with a focus on identifying facilitators. Method: Fifteen persons with intellectual disability who were gainfully employed and had been so for at least 1 year during the last 3 years, and 10 representatives from their employers, were interviewed. Results: Five facilitators were identified: (1) having tried various types of work, (2) liking to be at work, (3) balance concerning expectations and adaptations, (4) mutual engagement and flexibility, and (5) wage subsidies. Conclusion: Employment sustainability needs to be understood at individual as well as environmental and societal levels. In addition, both duration and progress should be considered regarding employment sustainability in this population. © 2022 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.

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. © 2022 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.