“If she wanted to go to Hawaii, then yeah... I want her to live life as much as I can.”
Families with Learning-Disabled Children: Exerting Choice and Control For Quality of Life.

Abstract

The enactment of The Children and Families Act in 2014 represented a significant attempt to create equity for disabled children in England; supporting special educational needs and disabilities (SEND); and promoting family rights to choice and control. This thesis explores the impact of this and other legislation, policies and professional systems on the experiences of disability; specifically for learning disabled-children with complex support needs and their families. It investigates whether families believe they can exercise sufficient choice and control when working with professional agencies to achieve a good quality of life. It also explores whether disability activism founded in theoretical perspectives about embodied disability have been able to challenge successfully societal barriers in progressing the rights of learning-disabled children.
Using a social constructionist framework, this qualitative study investigates how families navigate complex professional systems to obtain support to achieve independence, agency and a good quality of life for their learning-disabled children. Family narratives are explored to understand family lifeworld and experiences of, and perspectives on relationships with professionals within the system. Data is analysed using the UK Government wellbeing framework and Nussbaum’s central capabilites framework. Analyses of individual Education Health and Care Plans are undertaken to analyse whether they support the best possible outcomes for children. Additionally, the impact of societal constructs of childhood, parenthood and disability are considered.
The findings evidence some good, compassionate professional practice, but suggest that families may lack opportunities for co-production with professionals. Families did not believe that they have sufficient choice and control in working with professionals. Consequently, they have learned to develop strategies to better influence the quality of life outcomes they seek. Findings also point towards an increasing dominance of the SEND system within England. This has shifted focus to education outcomes rather than social outcomes; possibly disadvantaging learning-disabled children with complex support needs. Family narratives additionally provide evidence that, despite the rhetoric of human rights legislation and policies, learning-disabled children experience disability discrimination and ableism within professional and societal contexts. Highlighted is how disability theories have been mostly developed in an adult context which does not sufficiently recognise the lack of agency afforded by society to children, or the symbiotic nature of child/parent relationships. To begin to address this, a preliminary child and family disability contextual framework is offered. It is suggested that this provides the basis for future work to build a model that provides understanding of disability in the context of childhood, parenthood and family.