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Rapporten redovisar en kunskapskartläggning som är första delen i ett flerårigt forskningsprojekt som med olika metoder belyser frågan om individuella stödinsatser leder till ökad delaktighet för personer med funktionsnedsättning. Kartläggningen pekar på behov av fördjupande studier och i den registerstudie och de två intervjustudier som utgör forskningsprojektets andra delar är ambitionen att ytterligare fördjupa dessa perspektiv.

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.

Personer med intellektuell funktionsnedsättning är ofta i behov av stöd under hela livet. För att kunna leva ett gott och meningsfullt liv krävs adekvat stöd och det är rimligt att de som får stödet har inflytande över det. På individuell nivå sker detta på olika sätt men det bör också finnas möjligheter för kollektivt inflytande, tex för alla som bor på gruppbostad. På fem LSS-verksamheter har de personer som deltar i verksamheterna och personalen som arbetar med brukarna medverkat i samtal enligt den brukarorienterade BIKVA (Brukarinddragelse I KVAlitetsvurdering) -modellen. Som ett komplement till BIKVA genomfördes Qualid (Quality of Life in Late-Stage Dementia scale) -skattningar på den verksamhet som vänder sig till vuxna personer med de mest omfattande funktionsnedsättningarna. Sammanfattningsvis är erfarenheten att BIKVA-samtal fungerar väl för att på ett strukturerat sätt samla in brukares erfarenheter och synpunkter. För de brukare som har mycket omfattande funktionsnedsättning kan BIKVA-samtal föras enskilt och/eller i kombination med andra källor för inhämtande av synpunkter. En sådan källa kan vara en utvecklad version av Qualid. Resultaten av pilotprojektet kan användas som en inspiration för att arbeta med och utveckla former för ett strukturerat brukarinflytande. Genom att vetenskapligt studera och följa utvecklingen kan arbetet bidra till ett bättre underlag för en mer evidensbaserad praktik inom funktionshinderfältet. Projektet har genomförts i samarbete med Bräcke Diakoni. Fil. dr. Lill Hultman har varit ansvarig för det empiriska arbetet och analysen av resultat och har tillsammans med projektansvarig, professor Magnus Tideman, sammanställt rapporten. Båda författarna är verksamma på Institutionen för socialvetenskap på Marie Cederschiöld Högskola.

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., Funidng Agencies:Swedish Research Council for Health, Working Life and Welfare (FORTEMISAStiftelsen Söderström - Königska sjukhemmet

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.

Denna studie är en uppföljning av rapporten ”Riktlinjer – till hjälp eller stjälp?” som Länsstyrelserna publicerade 2007. På uppdrag av regeringen granskade länsstyrelserna kommunernas riktlinjer för bedömning av insatser enligt lagen om stöd och service till vissa funktionshindrade (LSS). Vi har genomfört en likartad analys 18 år senare. Syftet har varit att undersöka eventuella förändringar över tid i antal kommuner med riktlinjer och antal begränsningar per insats. Begränsningar kan handla tex om en insats endast kan beviljas i en viss omfattning eller bara får ges inom ett visst geografiskt område, att beslut om insatser alltid ska tidsbegränsas, om vissa insatser utesluter rätt till andra insatser eller om det finns begränsningar som har med personernas egenskaper att göra. Endast 6% av kommuners riktlinjer är helt fria från begränsningar i jämförelse med 10% år 2006. Trots att antalet begränsningar verkar vara relativt oförändrade över tid, visar vår studie att karaktären på begränsningarna har ändrats över tid. Till exempel fanns det fler begränsningar år 2006 i relation till tid medan 2022 års riktlinjer har fler begränsningar i relation till personens ålder och sociala nätverk. Vissa insatser, som ledsagning och kontaktperson, har relativt sett fler begränsningar nu jämfört med 2006 medan begränsningar när det gäller boendeinsatserrelativt sett minskat. Det behövs ytterligare studier för att kunna förklara förekomsten av riktlinjer och antalet begränsningar, men även forskning om hur riktlinjerna appliceras i praktiken av handläggare i respektive kommun.

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., This research was supported by the Academy of Finland (grant 308698 to Dr Latvala), the Swedish Research Council for Health, Working Life and Welfare (grant 2018-01789 to Dr Tideman), the Swedish Research Council (grant 2016-01989 to Dr Lichtenstein), and MISA (grant 20100825 to Dr Tideman). Dr Fazel is funded by Wellcome Trust Senior Research Fellowship in Clinical Science (#202836/Z/16/Z).

Maintaining work over time, and not only gaining brief or unstable jobs, is included in the UN Convention on Rights for People with Disabilities and mentioned in the UN Sustainability Development Goals. Still, employment rates among people with intellectual disabilities (ID) are low. We have reviewed previous international research on employment sustainability for people with ID and thereafter conducted a qualitative interview study with Swedish employees with ID and their employers. The systematic review showed that very little research is available about employment sustainability for people with ID, especially regarding societal factors. Ten studies were identified as published internationally between 2010 and 2020, and among them only two reported societal factors – (1) having been in an inclusive school environment or living in an area with a larger population size and (2) living without basic living security assistance or in a household with greater income level. The findings also highlight a lack of a consensus definition of sustainability and an inconsistency in measurements. The interview study focused on identifying what facilitates employment sustainability for people with ID, according to themselves and their employers. Fifteen persons with ID who were long-term employed, and ten representatives from their employers, were interviewed. 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. In addition, remaining at a workplace may be the result of lacking alternatives. 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. We strongly suggest further research in this field, not least qualitative studies in which people with ID ar

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., Funding: Stiftelsen Sävstaholm under Grant number ST 2015-040

In social work, when a person needs to be supported or represented by another – be it voluntarily or by compulsion, permanently or for a limited time – questions on autonomy, integrity, and rights are raised. In particular, representation has implications for the relationship between the person being represented, the representative, and the social worker or service provider. While legal reforms on support and representation have been performed in the Nordic countries the last decade, the views from those being represented, i.e. their needs and wishes on different forms of representation, have not been prominent. Using this as a starting point, this literature review explored previous research on experiences of people represented by others, e.g., people with intellectual disability, people with mental illness, and children needing representation by a third party The literature review encompassed relevant studies using qualitative, quantitative, and mixed methods, and a range of policy and legal areas. Four databases were used in the search process (Academic Search Complete, ASSIA, SocIndex, and Sociological Abstracts). Based on inclusion criteria, eight articles were included in this review, encompassing experiences of people with intellectual disability, people with mental illness, and children needing representation by a third party. Two recurrent themes relevant for social work were identified: the balance between protecting and violating rights, and the importance of lasting and trusting relationships between the person being represented and the person representing. The review revealed a need for more social work research, not least from a Nordic perspective, reflecting the experiences of people being represented.

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

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.

One goal with the UN Convention on the Rights of Persons with Disabilities is ensuring that persons with disabilities have the right to support in reaching and acting upon decisions. The aim of this pilot study was to explore how adults with intellectual disability describe their experiences of receiving support and being represented by a limited guardian. Two overall themes emerged from eight qualitative individual semi-structured interviews: Indispensable and valuable support and Mismanagement of the assignment. Our findings showed that limited guardianship is more complex than it may initially seem due to overlaps between protecting rights, ensuring support for the person, and managing financial matters. Mutual trust and the guardian’s ability to listen and be open to the client’s changing needs reduced the risk of the client being misrepresented or receiving insufficient support. To support assisted decision-making, limited guardians must develop their pedagogical skills and gain knowledge about intellectual disability.

Background: A growing body of evidence attests to the disproportionate impact of COVID-19 on persons with intellectual and developmental disabilities (IDD) during the pandemic. This study asked caregivers about their perceptions of how COVID-19 impacted them and the people they support. Method: An online survey was conducted in 12 countries during August-September 2020 and sought information on demographics, support practices, information and training, experiences of COVID-19, social distancing, and wellbeing, as measured by the DASS12. This study reports on 3,754 family members, direct support professionals, and managers who participated in the survey. Results: Caregivers observed increases in depression/anxiety, stereotyped behaviours, aggression towards others and weight gain in the person(s) they supported. They also reported difficulties supporting the person(s) to access healthcare. Families reported reducing or ceasing employment and absorbed additional costs when supporting their family member. Direct support professionals experienced changes in staff shifts, staff absences, increased workload and hiring of casual staff. Caregivers' wellbeing revealed high levels of stress, depression, and less so anxiety. The strongest predictor of wellbeing among families was observation of changes in mood in the person(s) they supported, while for direct support professionals, the strongest predictors of wellbeing were reorganisation of staff shifts and increases in new direct support staff. Discussion: Findings support the contention of this population experiencing a disproportionate burden during the COVID-19 pandemic, reflecting historical inequities in access to healthcare and other human rights violations which are now protected under the United Nations Convention on the Rights of Persons with Disabilities.

Background: Intellectual disability (ID) aggregates in families, but factors affecting individual risk and heritability estimates remain unknown. Methods: A population-based family cohort study of 4,165,785 individuals born 1973–2013 in Sweden, including 37,787 ID individuals and their relatives. The relative risks (RR) of ID with 95% confidence intervals (95% CI) were obtained from stratified Cox proportional-hazards models. Relatives of ID individuals were compared to relatives of unaffected individuals. Structural equation modeling was used to estimate heritability. Results: Relatives of ID individuals were at increased risk of ID compared to individuals with unaffected relatives. The RR of ID among relatives increased proportionally to the degree of genetic relatedness with ID probands; 256.70(95% CI 161.30–408.53) for monozygotic twins, 16.47(13.32–20.38) for parents, 14.88(12.19–18.16) for children, 7.04(4.67–10.61) for dizygotic twins, 8.38(7.97–8.83) for full siblings, 4.56(4.02–5.16) for maternal, 2.90(2.49–3.37) for paternal half-siblings, 3.03(2.61–3.50) for nephews/nieces, 2.84(2.45–3.29) for uncles/aunts, and 2.04(1.91–2.20) for cousins. Lower RRs were observed for siblings of probands with chromosomal abnormalities (RR 5.53, 4.74–6.46) and more severe ID (mild RR 9.15, 8.55–9.78, moderate RR 8.13, 7.28–9.08, severe RR 6.80, 5.74–8.07, and profound RR 5.88, 4.52–7.65). Male sex of relative and maternal line of relationship with proband was related to higher risk (RR 1.33, 1.25–1.41 for brothers vs. sisters and RR 1.49, 1.34–1.68 for maternal vs. paternal half-siblings). ID was substantially heritable with 0.95(95% CI 0.93–0.98) of the variance in liability attributed to genetic influences. Conclusions: The risk estimates will benefit researchers, clinicians, families in understanding the risk of ID in the family and the whole population. The higher risk of ID related to male sex and maternal linage will be of value for planning and interpreting etiologi, Funding agency:Swedish Research Council, European Commission Grant number: 2016-01989, 2017-00788, D088650, 2017-00641Swedish Research Council through the Swedish Initiative for Research on Microdata in the Social and Medical Sciences (SIMSAM) Grant number: 340-2013-5867Horizon 2020 Program of the European Union (COSYN, RIA grant) Grant number: 610307United States Department of Health & Human Services, National Institutes of Health (NIH) - USA, NIH National Institute of Mental Health (NIMH) Grant number:: U01 MH109528, R01 MH077139Shire

The aim of this study was to describe the social care provided for different age groups of people with intellectual disability, 55 years or above, and to investigate the association between such care and frailty factors for those with diagnosed level of intellectual disabilities. Descriptive and logistic regression analyses were used. Commonest forms of social care among the 7936 people were Residential care, Daily activities and Contact person. Home help and Security alarm increased with age. The frailty factors significantly associated with increased social care were age, polypharmacy and severe levels of intellectual disabilities. Persons most likely to be in residential care were in the age group 65–79 with polypharmacy and severe disability. The results indicate a need for further research of how frailty factors are considered in social care and longstanding medication, especially then severe intellectual disability hinders communication. A national strategic plan for preventive interventions should be developed to ensure the best possible healthy ageing. © The Author(s) 2021., Funding: Faculty of Medicine, Lund University

Purpose Previous reviews about employment for people with intellectual disability (ID) have left questions about employment sustainability unanswered. Therefore, the aim of this systematic review was to identify and analyse research regarding employment sustainability for people with ID. The research questions were: What research about employment sustainability for people with ID has been published internationally between 2010 and 2020? In the identified studies, how is employment sustainability defined and measured and what are the main findings regarding employment sustainability? Methods A systematic review was conducted using eight databases from various disciplines including medical, health, and social sciences. After a selection process, 10 articles remained, and a framework matrix was created to analyse them. An employment sustainability definition was used as an analytical tool. Results Ten articles were identified as being about employment sustainability for people with ID. Five of them used qualitative designs and five used quantitative designs. Only four out of ten contained a definition of employment sustainability, and there was an inconsistency in measurement methods. The reported findings in the studied articles were categorised into three types: proportions of long-term employed individuals within the studied population, facilitators and barriers to long-term employment. Conclusions There is only a limited amount of research about employment sustainability for people with ID. Nevertheless, a few facilitators and barriers could be identified. There is no consensus about how to define or measure employment sustainability, making comparisons difficult. © The Author(s) 2021

Persons with intellectual disability can be assumed to be particularly vulnerable to adverse consequen-ces of the Covid-19 pandemic. The increased risk of severe illness due to Covid-19, along with effects on social and community life, have very likely influenced persons with intellectual disability in unfo-reseen ways. The aim of this article is to identify how services and care for persons with intellectual disability in Sweden have been affected during the Covid-19 pandemic. Research questions addres-sed: (1) corona restrictions and consequences for persons with intellectual disabilities; (2) effects on support provided by staff and family members of persons with intellectual disability. An anonymous survey was distributed to 290 municipalities in Sweden and 33 privately owned care companies, and to relatives and family members through organizations within civil society. A total of 919 care-givers (340 relatives and 579 staff) completed the web-based survey during the period 25 August–27 September 2020. The results indicate that several aspects of daily life, with a specific focus on social relationships, have been affected, with several services cancelled or severely restricted during the first wave. A total of 661 respondents (77%) report restrictions in visits to and from family, whereas 629 (76%) report restrictions in visits to and from friends. Staff and family members report that daily activity centres have been cancelled or severely restricted (66.5%), as have social individual activities (73.5%) and individual training activities (75%). Other aspects reported are increases in negative psy-chological and physical health aspects, such as increased mood changes with episodes of depression and anxiety, less physical training and an increase in challenging behaviour. This study stresses the importance of developing specific preparations for possible future pandemic scenarios in order to pre-vent further isolation and negative health effects for persons with i

Context: Neurodevelopmental disorders are more prevalent in childhood-onset type 1 diabetes than in the general population, and the symptoms may limit the individual’s ability for diabetes management. Objective: This study investigated whether comorbid neurodevelopmental disorders are associated with long-term glycemic control and risk of diabetic complications. Methods: This population-based cohort study used longitudinally collected data from Swedish registers. We identified 11 326 individuals born during 1973-2013, diagnosed with type 1 diabetes during 1990-2013 (median onset age: 9.6 years). Among them, 764 had a comorbid neurodevelopmental disorder, including attention-deficit/hyperactivity disorder (ADHD), autism spectrum disorder, and intellectual disability. We used multinomial logistic regression to calculate odds ratios (ORs) of having poor glycemic control (assessed by glycated hemoglobin [HbA1c]) and Cox regression to estimate hazard ratios (HRs) of nephropathy and retinopathy. Results: The median follow-up was 7.5 years (interquartile range [IQR] 3.9, 11.2). Having any neurodevelopmental disorder (ORadjusted 1.51 [95% CI 1.13, 2.03]), or ADHD (ORadjusted 2.31 [95% CI 1.54, 3.45]) was associated with poor glycemic control (mean HbA1c > 8.5%). Increased risk of diabetic complications was observed in patients with comorbid neurodevelopmental disorders (HRadjusted 1.72 [95% CI 1.21, 2.44] for nephropathy, HRadjusted 1.18 [95% CI 1.00, 1.40] for retinopathy) and patients with ADHD (HRadjusted 1.90 [95% CI 1.20, 3.00] for nephropathy, HRadjusted 1.33 [95% CI 1.07, 1.66] for retinopathy). Patients with intellectual disability have a particularly higher risk of nephropathy (HRadjusted 2.64 [95% CI 1.30, 5.37]). Conclusion: Comorbid neurodevelopmental disorders, primarily ADHD and intellectual disability, were associated with poor glycemic control and a higher risk of diabetic complications in childhood-onset type 1 diabetes. © The Author(s) 2021., Funding: The Swedish Research Council (No 2017-00788), Stockholm Region Council (No 20180718) and Karolinska Institutet, Strategic Research Program in Neuroscience (StratNeuro).

© 2021 American Medical Association. All rights reserved.Importance: Knowledge of the health challenges and mortality in people with intellectual disability (ID) should guide health policies and practices in contemporary society. Objective: To examine premature mortality in individuals with ID. Design, Setting, and Participants: This population-based longitudinal cohort study obtained data from several national health care, education, and population registers in Sweden. Two registers were used to identify individuals with ID: the National Patient Register and the Halmstad University Register on Pupils With Intellectual Disability. Two cohorts were created: cohort 1 comprised young adults (born between 1980 and 1991) with mild ID, and cohort 2 comprised individuals (born between 1932 and 2013) with mild ID or moderate to profound ID; each cohort had matched reference cohorts. Data analyses were conducted between June 1, 2020, and March 31, 2021. Exposures: Mild or moderate to profound ID. Main Outcomes and Measures: The primary outcome was overall (all-cause) mortality, and the secondary outcomes were cause-specific mortality and potentially avoidable mortality. Results: Cohort 1 included 13 541 young adults with mild ID (mean [SD] age at death, 24.53 [3.66] years; 7826 men [57.8%]), and its matched reference cohort consisted of 135410 individuals. Cohort 2 included 24059 individuals with mild ID (mean [SD] age at death, 52.01 [16.88] years; 13649 male individuals [56.7%]) and 26602 individuals with moderate to profound ID (mean [SD] age at death, 42.16 [21.68] years; 15338 male individuals [57.7%]); its matched reference cohorts consisted of 240590 individuals with mild ID and 266020 with moderate to profound ID. Young adults with mild ID had increased overall mortality risk compared with the matched reference cohort (odds ratio [OR], 2.86; 95% CI, 2.33-3.50), specifically excess mortality in neoplasms (OR, 3.58; 95% CI, 2.02-6.35), diseases of the nervous system (O

Aims/hypothesis: The aim of this study was to investigate the effect of childhood-onset type 1 diabetes on the risk of subsequent neurodevelopmental disorders, and the role of glycaemic control in this association. We hypothesised that individuals with poor glycaemic control may be at a higher risk of neurodevelopmental disorders compared with the general population, as well as compared with individuals with type 1 diabetes with adequate glycaemic control. Methods: This Swedish population-based cohort study was conducted using data from health registers from 1973 to 2013. We identified 8430 patients with childhood-onset type 1 diabetes (diagnosed before age 18 years) with a median age of diabetes onset of 9.6 (IQR 5.9–12.9) and 84,300 reference individuals from the general population, matched for sex, birth year and birth county. Cox models were used to estimate the effect of HbA1c on the risk of subsequent neurodevelopmental disorders, including attention-deficit/hyperactivity disorder (ADHD), autism spectrum disorders (ASD) and intellectual disability. Results: During a median follow-up period of 5.6 years, 398 (4.7%) individuals with type 1 diabetes received a diagnosis of any neurodevelopmental disorder compared with 3066 (3.6%) in the general population, corresponding to an adjusted HR (HRadjusted) of 1.31 (95% CI 1.18, 1.46) after additionally adjusting for other psychiatric morbidity prior to inclusion, parental psychiatric morbidity and parental highest education level. The risk of any neurodevelopmental disorder increased with HbA1c levels and the highest risk was observed in patients with mean HbA1c >8.6% (>70 mmol/mol) (HRadjusted 1.90 [95% CI 1.51, 2.37]) compared with reference individuals without type 1 diabetes. In addition, when compared with patients with diabetes with HbA1c <7.5% (<58 mmol/mol), patients with HbA1c >8.6% (>70 mmol/mol) had the highest risk of any neurodevelopmental disorder (HRadjusted 3.71 [95% CI 2.75, 5.02]) an, Open Access funding provided by Karolinska Institute. Financial support was provided through the Swedish Research Council (number 2017–00788) and Karolinska Institutet, Strategic Research Program in Neuroscience (StratNeuro). AB was also supported by Stockholm Region (clinical research appointment number 20180718) while working on this project.

Studien analyserar sambanden mellan sysselsättning för unga vuxna med intellektuell funktionsnedsättning som gått i gymnasiesärskolan och deras sociala bakgrund, mätt som föräldrarnas utbildningsnivå och geografiska härkomst. Den här registerstudien baseras på Halmstad university register on pupils with intellectual disabilities (HURPID), Longitudinell integrationsdatabas för arbetsmarknads- och sjukförsäkringsstudier (LISA) samt LSS-registret. Studien omfattar 12 269 unga med intellektuell funktionsnedsättning som gick ut gymnasiesärskolan mellan 2001 och 2011. De samband som studeras analyseras genom multipla logistiska regressioner. Resultaten visar att föräldrars utbildningsnivå har viss betydelse för före detta gymnasiesärskoleelevers sysselsättning. Barn till högutbildade föräldrar har med större sannolikhet en sysselsättning inom daglig verksamhet och barn till lågutbildade föräldrar har med större sannolikhet ett förvärvsarbete. Sannolikheten för att ha någon av sysselsättningskategorierna daglig verksamhet eller förvärvsarbete är lägst bland barn till föräldrar som är födda i länder utanför Norden. Högutbildade föräldrar antas ha en högre grad av den ”välfärdskompetens” som krävs för att hantera dagens välfärdssystem och härigenom kunna påverka de ungas möjligheter att få insatser likt daglig verksamhet. Lågutbildade föräldrar antas ha egna erfarenheter av, och kontakter med, arbetsplatser där det finns arbetsuppgifter utan (eller med låga) formella kompetenskrav. Samhällets kunskaper och medvetenhet om den sociala bakgrundens betydelse för efter(sär)gymnasial sysselsättning bland unga med intellektuell funktionsnedsättning behöver öka. Detta i syfte att bättre möta varierande individuella förutsättningar och främja etablering i arbetslivet för fler unga vuxna med intellektuell funktionsnedsättning vid övergången från skoltid till arbetsliv.