Decision-making around moving on from full-time education: the roles and experiences of parents of disabled young people with degenerative conditions

Abstract

Little is known about the decision-making processes that take place within families when a disabled young person is moving on from full-time education and, particularly, parents' roles and experiences. This paper reports the analysis of data collected from a subsample of parents (representing seventeen families) participating in the Choice and Change Project who had discussed choices associated with their child leaving full-time education. (The Choice and Change Project is a longitudinal, qualitative study of choice-making by four different groups of service users including disabled young people with degenerative conditions and their parents.) The data were collected from parents during up to three semi-structured interviews conducted over a thirty-month period. Descriptive theories of decision-making informed the analysis. Parents differed in the extent to which they were actively involved in making choices about the 'destination' of their child after leaving full-time education. To some extent, the ability of the young person to make choices themselves influenced this. Parents who were assuming responsibility for making choices stressed the importance of having relevant information and felt professionals had a key role to play in supporting access to information. Parents used a number of criteria to guide their choice-making, including distance from home, perceived quality of the environment and staff and the young person's responses to the setting. Much of the information needed to make a choice required a visit to all the possible options. Ensuring such visits were positive and useful experiences for themselves and their child could be very difficult; support to achieve these visits was highly valued but not routinely provided. The study also highlights the lack of recognition given to the significant amount of work that many parents undertake to ensure that a choice is realised, and also to the emotional journey parents take when making or assisting in such decisions.