Transitions in the lives of adults with severe intellectual disability: an ecological life course perspective
Jacobs, Paula Charlotta
Change is part of our life journey and we all experience different transitions throughout our lives. However, people with intellectual disabilities often experience a lack of control and involvement in transition planning and transition processes. Within the current literature there is a focus on early transition experiences, such as people’s school years, while adulthood remains a lesser researched chapter in the lives of people with intellectual disabilities. Furthermore, most studies focus on those with mild or moderate intellectual disability and people with severe or profound intellectual disabilities are often excluded from research. In relation to those with severe or profound intellectual disability, transition processes pose questions about decision-making capacity and how to facilitate involvement and participation. A systematic review of the transition from school to adult services for young people with severe intellectual disabilities highlighted the importance of a life-course understanding to transitions, as well as highlighting gaps in relation to (1) the absence of multiple perspectives, even though transition processes involve multiagency decision-making, (2) a lack of involvement of young people and adults themselves within the research process and (3) a lack of focus on transitions as processes that operate across different ecological levels. Building on the identified gaps this thesis presents three interlinked studies that explore transitions across people’s adult lives. Namely, (1) the transition from school to adult services, (2) transitions within adult services such as moving out of the family home and (3) transitions in old age. Qualitative case study methodology was used in combination with approaches from ethnography, life story research and framework analysis. The first two studies followed six adults on their transition journeys and data collection involved observations, document reviews and interviews with families and professionals involved in each case. One of the main aims of my PhD was to involve people with severe intellectual disabilities in the research process and it was hoped that through the use of different data sources young people and adults would be more present in the research process compared to previous studies. The third study explored transitions in old age through interviews with social care professionals in two distinct social care settings, where adults with intellectual disability and staff lived together within a life-sharing model. The findings of my PhD confirm the value of a life course perspective and demonstrate that transitions are complex processes that occur across, and are influenced by, different systems. Additionally, my findings emphasise the importance to consider relationships and support networks that are available to people with severe intellectual disability within their adult lives when planning and supporting transitions. Questions are raised in relation to the role of professionals and services in the lives of adults, particularly once parents are no longer able to advocate on behalf of their children. Furthermore, the need to reconceptualise participation from a relational and interdependent perspective is stressed to facilitate the involvement of people with severe intellectual disabilities within decision-making processes. Further research is needed that explores the everyday life experiences of this particular group and that includes people within the research process.