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.

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.

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. 

In Sweden, support and service for people with disabilities is provided under the Swedish disability legislation, which has a clear focus on the individual’s right to a life like that of any other citizen and on promoting equality and participation in society. Nevertheless, having a physical impairment makes it clear that equal mental health care is not provided in practice. This becomes particularly salient when there is a need for mental health in-patient care. In this article, the aim is to explore our own experiences of epistemic injustice in relation to mental health care provision in a situation where one of us has a mobility impairment that require the presence of personal assistants in everyday life.

Critical personal narrative is applied to highlight the different, but intertwined experiences of a young female mental health user with a physical disability and her mother. Diary entrances, shared discussions and extracts from health care records are used to illustrate how epistemic injustice may occur in health care practices. In the analysis, we use Fricker’s concepts that relate to different aspects of epistemic injustice, to show how power is exerted.

Healthcare professionals’ inability to value and integrate patients experience-based knowledge into practice where the lack of a holistic perspective visualizes what happens when people do not fit into predefined categories. Instead of strengthening patients’ rights, health care professionals discredit patients’ and family members knowledge, and thereby giving themselves epistemic privilege. People with the combined experience of both disabilities and mental health issues are vulnerable to epistemic injustice and epistemic harm since they are commonly denied both epistemic credibility and authority.

Our results highlight the importance of counteracting resilient structures of social privilege and power and identifying and, in as far as possible, removing the mechanisms that exclude the epistemic resources of people with disabilities and their family members from being part of shared epistemic resources.

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.

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 intellectual disability.