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.

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.

Autistic people have historically been described as incapable of developing a deeper sense of self-awareness, and autistic understandings of self-awareness have been largely disregarded. The aim of this study is to explore the way young autistic adults try to understand their functionality and who they are, or to develop their sense of self-awareness, in work and in private life contexts. In 12 qualitative interviews conducted with four autistic adults without learning difficulties, we identified a rich set of reflections on knowing and accepting oneself. The overarching theme of self-knowledge has three subthemes: learning from previous experiences, learning about oneself by securing the support of others, and understanding and accepting autistic functionality. The strategy of self-knowledge was used by these young adults to help them achieve functional lives in the work and private domains. Our results show that young autistic adults both actively explore and develop their self-awareness. We suggest that it is important for practitioners and employers working with autistic individuals to engage with their journeys of self-awareness as a vital part of understanding and supporting them.

Lay abstract

When researchers and professionals talk about autism, they commonly point out problems and risks with autism or being autistic. Several interventions are based on the idea of the problems and risks of autism. Another way of talking about autism is to point out autistic people’s strengths and strategies which they use to handle barriers and problems in their lives in order to live good lives on their own terms. In this article, the researchers explore how autistic young adults formulate their own difficulties, strengths and support needs in order to get right support from support people. To be able to formulate this, autistic people need to get to know oneself and one’s own way of functioning. Autistic own self-knowledge must be central when formal support people, such as social workers, formulate support and interventions aimed at helping autistic people, in order for the support/intervention to be helpful.

The paper explores how disabled girls with Personal Assistants (PA:s) in a Swedish context constitute themselves as subjects in relation to intersecting meanings of age, gender, space, time and disability. The results illuminate the importance of social spaces and social relationships for the girls’ forming their sense of selves. Similar to ablebodied girls, disabled girls’ transition into adulthood can be viewed as a yoyo-transitions, entering and exiting different adult positions several times. Unlike ablebodied girls, they enter adult positions not commonly associated with youths, such as work leadership positions in relation to adult employees, such as the adult PA. This implies that they to some extent manage their own process of becoming an adult. Our findings stress the importance of recognition and awareness of disabled girls transition to adulthood as different not pathological to nondisabled girls’, where consideration is taken both to individual needs and preferences of female assistance users.

Points of interest

• All girls need to develop their sense of themselves to become women
• Disabled girls with personal assistants find it difficult to live ordinary lives as girls without the support of external personal assistants
• With the help of personal assistants disabled girls can participate in the places and with the people they choose themselves
• The relationship with the personal assistant put demands on the disabled girl to become a woman faster than abledbodied girls, in the same time it can hinder the girl’s development into a woman
• It is important for practioners and policymakers to recognize the dual role of personal assistants in disabled girls lives

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.

Yrket hälso- och sjukvårdskurator växte fram ur urbaniseringen vid förra sekelskiftet, men vilken betydelse urbaniseringen haft för kuratorsyrket har inte utforskats. I denna artikel undersöker vi hur kuratorns organisatoriska förutsättningar och professionella handlingsutrymme präglas av den urbana miljön. Tematisk analys genomfördes av individuella intervjuer och fokusgruppintervjuer med asylkuratorer och habiliteringskuratorer i Region Stockholm. Fyra teman framträdde: 1) Socialt arbete med urbaniseringsprocesser, 2) Globaliseringen och storstaden, 3) Effektivisering och handlingsutrymme samt 4) Storstadens många samverkansytor. En central slutsats är att den urbana miljön både kan innebära ett kraftigt begränsat handlingsutrymme, men också ge förutsättningar till ökat handlingsutrymme. Detta tycks bero på om styrning och utformning av uppdrag och arbetsuppgifter är framförhandlade utifrån patienters behov och utifrån kuratorsprofessionens egna villkor eller inte.

In this article, we explore experiences of support and self-management amongst young autistic adults in the context of vocational support interventions in Sweden. We analyse how young autistic men use different strategies to manage their vocational work and the support they need to maintain, achieve and sustain their work performance. Data consist of eleven interviews with 4 autistic young adult men in different work environments where vocational support interventions are implemented to different degrees. One finding concludes that the interviewees are affected by and try to adapt to neurotypical norms and expectations about working life and adulthood. Although individualised coping strategies can be helpful, it is important for employers and formal support persons to understand and acknowledge that individual emotional and problem-solving coping strategies are demanding and need to be combined with adaptations in the working environment. Another finding concludes how work managers act as gatekeeper in the vocational support system the young autistic men aspire to access and in which they need to manage their work performance. Thus, social workers must provide structured and well-coordinated formal work support by both involving the autistic clients’ employers, work managers and informal networks.

In a participatory action research project, we emphasize experiences of collaboration between academic and community researchers by applying analytical autoethnography. The aim of the article is to describe the research process which involves both individual and collaborative processes, and to analyze challenges in relation to participation in the ongoing research process. We identified four themes: Start-up and initial challenges, Conditions and structural prerequisites for collaboration, Joint development of work methods and Power and role distribution. Our findings are presented in two separate analyses; a collaborative inductive analysis and an academic led theoretical analysis in which Arnstein’s ladder of participation and Fricker’s concept of epistemic injustice are utilized in order to scrutinize challenges related to different degrees of participation in the research process. The results demonstrate that shared hermeneutic resources are necessary for the mitigation of epistemic injustice and enablement of mutual learning processes, such as collective writing processes. The results also indicate that a full participation for community researchers in the entire research process was difficult to achieve, both in relation to structural resources such as allocated time, and in relation to perceptions of meaning- making aspects, for example, individual interests and contributions in terms of knowledge.

This study examines how childhoods are constructed within the assessment process concerning respite care for children with disabilities in Sweden. The social workers need to take into consideration the needs of the child with disabilities as well as those of the parents and siblings. The application for respite care compels the social worker to prioritise needs, evaluate children’s development and define what constitutes a good childhood. One of the results of such a process is a construction of childhood for children with disabilities which contains a strong focus on practising and developing, whereas their siblings are perceived as needing relaxation and quality time with their parents. It matches the childhood sociological concepts of ‘becomings’ and ‘beings’, where children with disabilities are stressed as ‘becoming’ and continually needing to develop their skills.

Studien undersöker barndomskonstruktioner inom handläggningsprocessen för korttidsvistelse enligt LSS. I denna process behöver socialarbetarna väga samman behoven avseende barnet med funktionsnedsättning, föräldrar och syskon. Socialarbetaren måste prioritera behov, utvärdera barns utveckling och definiera vad som utgör en god barndom. Ett av resultaten är att barndomskonstruktioner för barn med funktionsnedsättning fokuserar på att öva och utvecklas till skillnad från syskonen som uppfattas vara i behov av avkoppling och kvalitetstid med sina föräldrar. Konstruktionerna överensstämmer med de barndomssociologiska begrepp “beings” och “becomings” där barn med funktionsnedsättningar är “becomings” i ständigt behov av att utveckla sina färdigheter.