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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.

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.

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.

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

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: 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.

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 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 af, Funding text:Research Council of the Swedish Alcohol Retailing MonopolyPolish Medical Research Agency

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

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.

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: 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.

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 af, Funding agencies:Research Council of the Swedish Alcohol Retailing Monopoly 2020-0050Academy of Finland 308698Polish Medical Research Agency 2021/ABM/02/00006/P/03

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: 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.

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.

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.

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., Funding agency:MISA 20100825

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

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, Funding: Open access funding provided by Halmstad University.

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.

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, Funding: Open access funding provided by Halmstad University.

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.

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.

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

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, Funding: Open access funding provided by Halmstad University.

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

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

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, Funding: Open access funding provided by Halmstad University.

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., Ytterligare forskningsfinansiär: Medicinska fakulteten, Lunds universitet

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, Funding: Open access funding provided by Halmstad 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

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.

Personer med intellektuell funktionsnedsättning befinner sig i en utsatt position vid kriser som en pandemi, dels beroende på funktionsnedsättningen och dess konsekvenser, dels beroende på de levnadsförhållanden man lever under. Det saknas dock systematisk kunskap om hur personer med intellektuell funktionsnedsättning i Sverige upplevt de restriktioner och begränsningar som covid-19-pandemin inneburit och hur den påverkat deras vardagsliv. I denna studie har 34 vuxna med lindrig eller måttlig intellektuell funktionsnedsättning och som har någon form av stödinsats från samhället intervjuats om sina erfarenheter av ett drygt års pandemi. 18 män och 16 kvinnor i åldrarna 23 till 77 år från olika delar av landet har medverkat. Utöver dessa har nio representanter för intresseorganisationen FUB (Föreningen för barn, ungdomar och vuxna med utvecklingsstörning) intervjuats för att i första hand delge erfarenheter av vardagslivet under pandemin för personer med mer omfattande intellektuell funktionsnedsättning. Syftet med studien har varit att beskriva och analysera de erfarenheter och upplevelser av pandemin och dess konsekvenser i vardagen som personer med intellektuell funktionsnedsättning har. Huvudresultaten av intervjuerna sammanfattas i en typologi med tre typer: • Nästan som vanligt • En begränsad vardag • Att vara i “lock-down” Som namnen antyder finns en grupp personer med intellektuell funktionsnedsättning som upplever att de kunnat leva ett nästan vanligt liv under pandemin. De har påverkats av restriktionerna på samma sätt som andra medborgare men kunnat fortsätta med ett tämligen vanligt vardagsliv. Mellangruppen beskriver en begränsad vardag som periodvis dominerats av begränsningar av sysselsättning och aktiviteter liksom begränsade möjligheter till sociala kontakter. Den tredje gruppen; Att vara i “lock-down”, är den största till antalet personer och det är de individerna som upplevt de mest genomgripande och långvariga begränsningarna av vardagslivet., Lättläst sammanfattning: Rapport covid-19 och personer med IF Så var pandemin för vuxna med intellektuell funktionsnedsättning (IF) År 2020 började viruset corona sprida sig i Kina. Massor av människor blev smittade och sjuka. Viruset spred sig snabbt till andra länder. Det blev en pandemi i hela världen. Alla fick hjälpa till att försöka stoppa smittan. Vi skulle tvätta händerna ofta och inte träffa många människor. Nu har forskare undersökt hur tiden med corona har varitför personer med intellektuella funktionsnedsättningar, IF. Forskarna pratade med vuxna som själva har IF. Personal och familjer fick svara på en enkät. Pandemin har varit en jobbig tid för många. De har inte kunnat träffa sin familj och vänner. De har mest varit hemma på dagarna. Pandemin har på många sätt varit värreför personer med IF än för andra människor. De hade större risk att bli allvarligt sjukaoch måste vara extra försiktiga. Många blev nästan instängda i sina hemoch en del fick inte veta varför. Forskningen visar att det var stor skillnad på olika platser i Sverige. Vissa dagliga verksamheter stängde helt. Vissa hade öppet nästan som vanligt. Vissa lät folk jobba hemma. Det fanns inga tydliga regler eller råd som gällde personer med IF i hela landet. Men för många med IF var det fler förbud än för andra människor i Sverige.Vissa fick inte ens ha besök i sitt eget hem. Forskningen visar att många har mått dåligt. De har känt sig ledsna, oroliga och ensamma. En del har blivit mer arga. En del har haft svårt att sova. Många har rört sig mindre och kan få problem av det. De har inte kunnat träna som vanligt på gym eller simhall till exempel. För den som har svårt att prata med ord blir det extra jobbigt att inte få kramar eller prata med händerna. Några säger att det varit skönt att vara hemma mycket. De har sluppit stressen av att vara bland folk. Men de flesta har saknat sina vänner, familj och kollegor. De längtar efter att resa, gå ut och dansa och bara leva som vanligt.

Personer med intellektuell funktionsnedsättning befinner sig i en utsatt position vid kriser som en pandemi, dels beroende på funktionsnedsättningen och dess konsekvenser, dels beroende på de levnadsförhållanden man lever under. Det saknas dock systematisk kunskap om hur personer med intellektuell funktionsnedsättning i Sverige upplevt de restriktioner och begränsningar som covid-19-pandemin inneburit och hur den påverkat deras vardagsliv. I denna studie har 34 vuxna med lindrig eller måttlig intellektuell funktionsnedsättning och som har någon form av stödinsats från samhället intervjuats om sina erfarenheter av ett drygt års pandemi. 18 män och 16 kvinnor i åldrarna 23 till 77 år från olika delar av landet har medverkat. Utöver dessa har nio representanter för intresseorganisationen FUB (Föreningen för barn, ungdomar och vuxna med utvecklingsstörning) intervjuats för att i första hand delge erfarenheter av vardagslivet under pandemin för personer med mer omfattande intellektuell funktionsnedsättning. Syftet med studien har varit att beskriva och analysera de erfarenheter och upplevelser av pandemin och dess konsekvenser i vardagen som personer med intellektuell funktionsnedsättning har. Huvudresultaten av intervjuerna sammanfattas i en typologi med tre typer: • Nästan som vanligt • En begränsad vardag • Att vara i “lock-down” Som namnen antyder finns en grupp personer med intellektuell funktionsnedsättning som upplever att de kunnat leva ett nästan vanligt liv under pandemin. De har påverkats av restriktionerna på samma sätt som andra medborgare men kunnat fortsätta med ett tämligen vanligt vardagsliv. Mellangruppen beskriver en begränsad vardag som periodvis dominerats av begränsningar av sysselsättning och aktiviteter liksom begränsade möjligheter till sociala kontakter. Den tredje gruppen; Att vara i “lock-down”, är den största till antalet personer och det är de individerna som upplevt de mest genomgripande och långvariga begränsningarna av vardagslivet., Lättläst sammanfattning: Rapport covid-19 och personer med IF Så var pandemin för vuxna med intellektuell funktionsnedsättning (IF) År 2020 började viruset corona sprida sig i Kina. Massor av människor blev smittade och sjuka. Viruset spred sig snabbt till andra länder. Det blev en pandemi i hela världen. Alla fick hjälpa till att försöka stoppa smittan. Vi skulle tvätta händerna ofta och inte träffa många människor. Nu har forskare undersökt hur tiden med corona har varitför personer med intellektuella funktionsnedsättningar, IF. Forskarna pratade med vuxna som själva har IF. Personal och familjer fick svara på en enkät. Pandemin har varit en jobbig tid för många. De har inte kunnat träffa sin familj och vänner. De har mest varit hemma på dagarna. Pandemin har på många sätt varit värreför personer med IF än för andra människor. De hade större risk att bli allvarligt sjukaoch måste vara extra försiktiga. Många blev nästan instängda i sina hemoch en del fick inte veta varför. Forskningen visar att det var stor skillnad på olika platser i Sverige. Vissa dagliga verksamheter stängde helt. Vissa hade öppet nästan som vanligt. Vissa lät folk jobba hemma. Det fanns inga tydliga regler eller råd som gällde personer med IF i hela landet. Men för många med IF var det fler förbud än för andra människor i Sverige.Vissa fick inte ens ha besök i sitt eget hem. Forskningen visar att många har mått dåligt. De har känt sig ledsna, oroliga och ensamma. En del har blivit mer arga. En del har haft svårt att sova. Många har rört sig mindre och kan få problem av det. De har inte kunnat träna som vanligt på gym eller simhall till exempel. För den som har svårt att prata med ord blir det extra jobbigt att inte få kramar eller prata med händerna. Några säger att det varit skönt att vara hemma mycket. De har sluppit stressen av att vara bland folk. Men de flesta har saknat sina vänner, familj och kollegor. De längtar efter att resa, gå ut och dansa och bara leva som vanligt.

Personer med intellektuell funktionsnedsättning befinner sig i en utsatt position vid kriser som en pandemi, dels beroende på funktionsnedsättningen och dess konsekvenser, dels beroende på de levnadsförhållanden man lever under. Det saknas dock systematisk kunskap om hur personer med intellektuell funktionsnedsättning i Sverige upplevt de restriktioner och begränsningar som covid-19- pandemin inneburit och hur den påverkat deras vardagsliv. I denna studie har 34 vuxna med lindrig eller måttlig intellektuell funktionsnedsättning och som har någon form av stödinsats från samhället intervjuats om sina erfarenheter av ett drygt års pandemi. 18 män och 16 kvinnor i åldrarna 23 till 77 år från olika delar av landet har medverkat. Utöver dessa har nio representanter för intresseorganisationen FUB (Föreningen för barn, ungdomar och vuxna med utvecklingsstörning) intervjuats för att i första hand delge erfarenheter av vardagslivet under pandemin för personer med mer omfattande intellektuell funktionsnedsättning. Syftet med studien har varit att beskriva och analysera de erfarenheter och upplevelser av pandemin och dess konsekvenser i vardagen som personer med intellektuell funktionsnedsättning har. Huvudresultaten av intervjuerna sammanfattas i en typologi med tre typer: Nästan som vanligt En begränsad vardag Att vara i “lock-down” Som namnen antyder finns en grupp personer med intellektuell funktionsnedsättning som upplever att de kunnat leva ett nästan vanligt liv under pandemin. De har påverkats av restriktionerna på samma sätt som andra medborgare men kunnat fortsätta med ett tämligen vanligt vardagsliv. Mellangruppen beskriver en begränsad vardag som periodvis dominerats av begränsningar av sysselsättning och aktiviteter liksom begränsade möjligheter till sociala kontakter. Den tredje gruppen; Att vara i “lock-down”, är den största till antalet personer och det är de individerna som upplevt de mest genomgripande och långvariga begränsningarna av vardagslivet. Besöksförb

Personer med intellektuell funktionsnedsättning befinner sig i en utsatt position vid kriser som en pandemi, dels beroende på funktionsnedsättningen och dess konsekvenser, dels beroende på de levnadsförhållanden man lever under. Det saknas dock systematisk kunskap om hur personer med intellektuell funktionsnedsättning i Sverige upplevt de restriktioner och begränsningar som covid-19-pandemin inneburit och hur den påverkat deras vardagsliv. I denna studie har 34 vuxna med lindrig eller måttlig intellektuell funktionsnedsättning och som har någon form av stödinsats från samhället intervjuats om sina erfarenheter av ett drygt års pandemi. 18 män och 16 kvinnor i åldrarna 23 till 77 år från olika delar av landet har medverkat. Utöver dessa har nio representanter för intresseorganisationen FUB (Föreningen för barn, ungdomar och vuxna med utvecklingsstörning) intervjuats för att i första hand delge erfarenheter av vardagslivet under pandemin för personer med mer omfattande intellektuell funktionsnedsättning. Syftet med studien har varit att beskriva och analysera de erfarenheter och upplevelser av pandemin och dess konsekvenser i vardagen som personer med intellektuell funktionsnedsättning har. Huvudresultaten av intervjuerna sammanfattas i en typologi med tre typer: • Nästan som vanligt • En begränsad vardag • Att vara i “lock-down” Som namnen antyder finns en grupp personer med intellektuell funktionsnedsättning som upplever att de kunnat leva ett nästan vanligt liv under pandemin. De har påverkats av restriktionerna på samma sätt som andra medborgare men kunnat fortsätta med ett tämligen vanligt vardagsliv. Mellangruppen beskriver en begränsad vardag som periodvis dominerats av begränsningar av sysselsättning och aktiviteter liksom begränsade möjligheter till sociala kontakter. Den tredje gruppen; Att vara i “lock-down”, är den största till antalet personer och det är de individerna som upplevt de mest genomgripande och långvariga begränsningarna av vardagslivet., Lättläst sammanfattning: Rapport covid-19 och personer med IF Så var pandemin för vuxna med intellektuell funktionsnedsättning (IF) År 2020 började viruset corona sprida sig i Kina. Massor av människor blev smittade och sjuka. Viruset spred sig snabbt till andra länder. Det blev en pandemi i hela världen. Alla fick hjälpa till att försöka stoppa smittan. Vi skulle tvätta händerna ofta och inte träffa många människor. Nu har forskare undersökt hur tiden med corona har varitför personer med intellektuella funktionsnedsättningar, IF. Forskarna pratade med vuxna som själva har IF. Personal och familjer fick svara på en enkät. Pandemin har varit en jobbig tid för många. De har inte kunnat träffa sin familj och vänner. De har mest varit hemma på dagarna. Pandemin har på många sätt varit värreför personer med IF än för andra människor. De hade större risk att bli allvarligt sjukaoch måste vara extra försiktiga. Många blev nästan instängda i sina hemoch en del fick inte veta varför. Forskningen visar att det var stor skillnad på olika platser i Sverige. Vissa dagliga verksamheter stängde helt. Vissa hade öppet nästan som vanligt. Vissa lät folk jobba hemma. Det fanns inga tydliga regler eller råd som gällde personer med IF i hela landet. Men för många med IF var det fler förbud än för andra människor i Sverige.Vissa fick inte ens ha besök i sitt eget hem. Forskningen visar att många har mått dåligt. De har känt sig ledsna, oroliga och ensamma. En del har blivit mer arga. En del har haft svårt att sova. Många har rört sig mindre och kan få problem av det. De har inte kunnat träna som vanligt på gym eller simhall till exempel. För den som har svårt att prata med ord blir det extra jobbigt att inte få kramar eller prata med händerna. Några säger att det varit skönt att vara hemma mycket. De har sluppit stressen av att vara bland folk. Men de flesta har saknat sina vänner, familj och kollegor. De längtar efter att resa, gå ut och dansa och bara leva som vanligt.