Falling through the cracks. A study on young adults with intellectual disability not involved in employment, education or daily activity

Abstract: The time after finishing secondary school is marked by changes and milestones of adulthood. There is increased attention and knowledge that for some individuals in the general population, the time after secondary school consists of not participating in an occupation. However, there is limited knowledge and research on young adults with intellectual disability who after special upper secondary school find themselves in this situation. In this thesis, these individuals are referred to as Not in Employment, Education, or Daily activity(NEED). The general aim of the thesis is to increase knowledge about young adults with intellectual disability who after upper secondary school are NEED, by providing deeper understanding and analysis of the target group’s characteristics and associations with NEED status, as well as to study the subjective experiences of becoming and being NEED. This is a compilation thesis consisting of two studies that have led to four articles, as well as an introductory comprehensive summary. The four articles have different focuses but together provide a nuanced understanding of the target group.The first study is a register study, which is the basis for article I and II. The register study used the national Halmstad University Register for Pupils with Intellectual Disability (HURPID) and two other Swedish registers to conduct statistical analyses. Article I explored the situation after USSID for the NEED group in terms of background factors, financial support and the use of disability services. The findings showed the heterogeneity of the group. Many had financial supports, but few used disability services. Moreover, background factors, financial support and use of disability services had various significant associations with not having an occupation. Article II described and analyzed the group’s family situation and how this relates to not participating in an occupation as opposed to being in an occupation of employment, education or daily activity. Family situation in the target group varied depending on sex, age, and immigrant background. Regression analyses illustrated the significance of family situation to occupational status; however the results differed between men and women. Factors of partnerships and having children were found to be associated with not participating in an occupation for women, but not for men. The second study is an interview study that is the basis for article III and IV. Interviews were conducted with 10 participants from the target group and these were analyzed with thematic analyses. Article III analyzed first-hand experiences of becoming and being NEED, and encounters with agencies and institutions. The results indicated that the experience of not having an occupation is influenced by individual and environmental factors. It was common to experience limited post-school occupations, face challenges with finding an occupation, and difficulties with navigating and attaining appropriate formal support. The experiences of not being involved in an occupation is discussed as a form of social exclusion. Article IV examined the group’s social relationships, networks and experiences of belonging. The results found that individuals had social relationships and networks in informal domains (family, friends, partners), but also in organized settings (the support and service system, recreational activities). These relationships provided feelings of acceptance, support, and care which all related to a sense of belonging. However, within their experiences of belonging these individuals were simultaneously striving for increased independence. This duality between belonging and independence at times clashed, as well as was influenced and amplified by dimensions surrounding having an intellectual disability.The overall empirical findings are analyzed through the use of ecological systems theory, and theories of social exclusion and belonging. An ecological approach allows for organizing and identifying different aspects of the environment, characteristics of the individual as well as interactions occurring between them, that help in understanding becoming and being NEED. Social exclusion and belonging more closely examine different perspectives of not having an occupation. These concepts are regarded as existing on a continuum where individuals in the target group can experience varying degrees of both, depending on context and situation. Within both social exclusion and belonging, some people with intellectual disability are displaying an active choice. These individuals are resisting categorization by choosing to not partake in the supports and settings associated with an intellectual disability. The conclusion of this thesis is that young adults with intellectual disability who are not participating in an occupation is a complex phenomenon. To understand this more in-depth many different factors, interactions and experiences have to be considered. There is a great need to develop resources and services that have a holistic approach that also fit with individual needs and desires, in order to better promote participation and prevent individuals from falling through the cracks.