Relations of Care: Framing the Social Worlds of Young Adults with Complex Needs

Abstract

Although not a heterogeneous group, young adults with profound and multiple learning disabilities or “complex needs” are similar as a result of their physical vulnerability and dependence on the care of others. Physical, behavioural, communication and care challenges coupled with geographical and resource constraints may conspire, resulting in reduced social opportunities and impoverished social networks. Centred within an ecological framework, this mixed-methods study used interviews, an online survey and case-study methods to investigate the ways in which care is understood and provided to young New Zealand adults with complex needs, and to examine its influence on their social worlds. Other allied factors were also explored. The findings reveal that young adults with complex needs occupy ambiguous social positions determined by their significant and complex disabilities and their dependency on care. The study also found that while individualised funding models support alternate approaches to social inclusion, family resources and parents’ social capital are key determinants of success in creating authentic spaces of belonging and community for their children. The study also confirms the belief that community is founded on the small individual contexts and tangle of relationships that occur within the spaces where families live and work while juggling their responsibilities for accessing support and providing continuous care. Based on the findings of this study, a number of recommendations are made. These include the need for greater recognition and acceptance that there are diverse and multiple contexts of belonging for people with complex needs, including places that are codified as “disabled,” as well as communal settings. Community participation must also include “maps” that enable and encourage people with and without disabilities to travel both ways, entering and participating in each other’s social domains. Increased support for parents and service providers is also recommended to ensure that reciprocal relationships and meaningful engagement are the central tenets of social inclusion and belonging for young people with complex needs.