Transitions to adulthood for disabled young people: literature review

Glossary & Clarifications

In this section we briefly define certain key terms that recur throughout the review. However, it should be noted that these and other terms are used across the evidence base in different ways and with competing definitions. Therefore, our definitions are intended to be general and broad, and they may not conform to how individual authors cited use the same terms. We have, for the most part, designed our own broad and flexible definitions rather than employed fixed or given ones. They should therefore be interpreted as a helpful steer, rather than a rigid definition.

Transitions – The term 'transition' to adulthood is defined by the Association for Real Change (ARC) Scotland as referring to "the period when young people [aged 14-25] develop from children to young adults. This is not a single event, such as leaving school, but a growing-up process that unfolds over several years and involves significant emotional, physical, intellectual and physiological changes. During this period young people progressively assume greater autonomy in many different areas of their lives and are required to adjust to different experiences, expectations, processes, places and routines. Transitions also impact on the family or on those who care for the child or young person."^[22]

Disabled young people – we refer to disabled young people throughout this report, with a focus on people between adolescence and early adulthood. ARC Scotland defines this as between the ages of 14-25, which we adhere to as much as possible, though other sources may set different parameters or not specify these. We note that different authors and sources will have competing definitions of disability, and exercise varying levels of discretion and/or selectivity in their language-use and inclusion in their research. We have broadly considered studies that refer to people with disabilities of various kinds (including developmental, physical, learning and sensory) as well as certain studies on young people with 'additional support needs' where it has been judged that these are suitable. 'Additional support needs' are defined by Education Scotland and the Scottish Government as "requir[ing] support that is additional to, or different from, that received by children or young people of the same age to ensure they benefit from education, whether early learning, school or preparation for life after school […] Additional support needs can be both long- and short-term, or can simply refer to the help a child or young person needs in getting through a difficult period. Additional support needs can be due to disability or health, learning environment, family circumstances [and/or] social and emotional factors."^[23]

Institutional transitions – Within this review, these refer to transitions from child to adult services within specific clinical, healthcare and social care settings.

Life-course transitions – For the purposes of this review, life-course transitions refer to the changes that occur as a result of a young person attaining a new life-stage. This might be a result of reaching a specific age (e.g. leaving school) or due to the young person choosing to change their circumstances (e.g. choosing to pursue independent living).

Independent living – This refers to the process by which a young disabled person takes on greater responsibilities and self-sufficiency, including in managing their own clinical care (i.e. self-management), and/or living alone. Independent living does not refer to compete self-sufficiency (or living alone), but rather the extent to which "independent living is possible through the combination of various environmental and individual factors that allow disabled people to have control over their own lives".^[24]

Active Citizenship - This term is occasionally referred to in the literature, but without any clear or consistent definition provided. We consider that the term is likely to refer to a young person's involvement in their local community – both geographical and communities of interest.