Purpose: The purpose of the study was to explore how adolescents with disabilities experience everyday life with personal assistants.

Method: In this qualitative study, individual interviews were conducted at 35 occasions with 16 Swedish adolescents with disabilities, in the ages 16–21. Data were analyzed using grounded theory methodology.

Results: The adolescents' main concern was to achieve normality, which is about doing rather than being normal. They try to resolve this by assisted normality utilizing personal assistance. Assisted normality can be obtained by the existing relationship, the cooperation between the assistant and the adolescent and the situational placement of the assistant. Normality is obstructed by physical, social and psychological barriers.

Conclusion: This study is from the adolescents’ perspective and has implications for understanding the value of having access to personal assistance in order to achieve assisted normality and enable social interaction in everyday life.

Implications for Rehabilitation

• Access to personal assistance is important to enable social interaction in everyday life.
• A good and functional relationship is enabled through the existing relation, co-operation and situational placement of the assistant.
• If the assistant is not properly sensitized, young people risk turning into objects of care.
• Access to personal assistants cannot compensate for disabling barriers in the society as for example lack of acceptance.

The aim of this study was to improve understanding of the experiences of adolescents with disabilities concerning meetings that affect their possibility to receive personal assistance in Sweden. Qualitative inductive content analysis was used to describe their experiences. Overall adolescents were found to be reluctant to participate in meetings. Two main approaches could be discerned – taking part and taking part by proxy. The adolescents who took part in meetings tried to adapt their self-presentation to fit with the social workers’ requirements by presenting their worst self, giving requested information, using support and raising their voices. The adolescents who choose to participate by proxy were either being involved or not being involved. Being involved implied involvement before and/or after the meeting. The meaning of participants’ strategies was examined through a social constructivist lens. The results indicate that ‘performing disability’ during the meetings is a prerequisite for obtaining personal assistance. In its current form adolescents’ participation is reduced to tokenism and this raises questions about how to implement a child perspective.

Syftet med studien var att öka förståelsen av funktionshindrade ungdomars erfarenhet av möten som påverkar deras möjlighet att få personlig assistans i Sverige. Kvalitativ induktiv innehållsanalys användes för att analysera och beskriva deras erfarenheter. Studien visar att ungdomarnas deltagande i möten var motvilligt. Två huvudsakliga förhållningssätt kunde urskiljas – ungdomar som valde att personligen delta och deltagande via ombud. Ungdomarna som deltog i möten försökte anpassa sin självpresentation så att den passade in med LSS-handläggarnas krav genom att visa upp sin sämsta sida, lämna efterfrågad information, söka stöd och göra sin röst hörd. Ungdomarna som valde att delta genom ombud var antingen involverade eller inte involverade i mötena. Att vara involverad innebar medverkan före och/eller efter mötet. Betydelsen av ungdomarnas strategier undersöktes genom en socialkonstruktivistisk lins. Resultaten visar att i samband med mötet är uppvisandet av funktionshindret en förutsättning för att beviljas personlig assistans. I sin nuvarande form reduceras ungdomars deltagande till symboliskt och det väcker frågor kring hur ett barnperspektiv kan implementeras.

The aim of this study was to gain a deeper understanding of Swedish social workers’ experience of disabled children’s participation, to discover in what ways their knowledge about impairment and disability, combined with legal literacy and local context influence children’s participation in formal meetings and decision making. Seven focus-group interviews were conducted with 35 municipal social workers from communities in different parts of Sweden. The phenomenological analysis resulted in the overarching theme of elusive participation, in which participation was described as difficult to grasp both in relation to what was supposed to be achieved and what it was meant to result in. Elusive participation entailed a discrepancy between policy and practice, norms and perception of normality, conflicting perspectives and needs, judgment of children’s abilities. These findings underline the importance of creating safe spaces in which social workers have the opportunity for critical reflections and shared discussions about social work practice.

This qualitative study explores Swedish case workers experiences of decision making regarding disabled children's right to obtain assistance in their everyday life whereby they can live independently in the community. Data collection included seven focus-group interviews and 11 complementary individual interviews with case workers from different agencies responsible for decisions regardig access to personal assistance. Grounded theory methodology was used. Compromised professional integrity under shifting conditions emerged as a main concern and maintaing professional integrity was used as an approach to resolve it. The case workers are maintaining professional integrity by applying different strategies; struggling with division of responsibility, bureaucratizig, and justifying and protecting. The results indicate that present application of assessment criteria in combination with the utilization of precedent rulings has made it difficult for the case workers to make decisions that provide children access to assistance. Current practice raises questions about the case workers perspectives of professionalism.