Transitions to adulthood for disabled young people: literature review

Gap Analysis

This section reflects on areas of consensus within the literature, as well as highlighting areas where less is known or established and flagging areas for future research.

Summary

• We understand what the common transition experiences of children and families are; namely, disorientation, inadequate planning, and limited 'wrap-around support'.
• We know what characterises a good transition in principle, but robust and granular evidence about what works in practice, including in specific institutional contexts is more limited.
• While there is a wealth of high-quality evidence relating to transitions within healthcare, much less is known about transitions into further and higher education and employment, and about personal issues (including self-management, independent living, and personal relationships).

Findings

This literature review has advanced a comprehensive and detailed summary and synthesis of the current evidence on disabled young people's transitions to adulthood. We found a broad consensus within the literature in support of certain guiding principles, largely revolving around holistic, personalised and concerted planning, developed in collaboration with young people and their families, and underpinned by high-quality, well-resourced and well-staffed services, delivered in partnership.

The counterpoint to this consistency, however, is a high degree of duplication within the literature. There is a consistent commitment to these guiding principles, with less granular detail on their practical realisation. This may be a result of insufficient research, the non-standardised nature of service-delivery, and/or the multiplicity of possible outcomes and variables.

Our analysis has identified a number of gaps in the current knowledge-base, relating to both specific transitions and specific subgroups. These include:

• Particular institutional settings (e.g. social care, education, employment and housing)
• Particular life-course issues (e.g. independent living, relationships (social and sexual), and citizenship)
• Particular conditions (e.g. autism/Asperger's, sensory impairments, profound/severe/complex, mental health)
• Protected characteristics (e.g. gender, race).

A further limitation is a lack of intersectional evidence in relation to the above (e.g. the social and relational aspects of employment or the effect of differential demographic characteristics). There is some evidence that young people with learning and developmental disabilities can face especial difficulties in a range of transitions (including employment and independent living), but there is limited evidence beyond this.

Methodological considerations

We have also identified a number of further limitations within the literature regarding the types of evidence available, namely:

• A lack of robust qualitative evidence
• A lack of longitudinal evidence (which is particularly important when thinking about outcomes)

There is also a broad sense that existing monitoring and evaluation processes are often inadequate for the purposes of identifying best practice. We, and other authors, note that many of the established principles and lists of best practice have been developed on the basis of stakeholders' input and validation, and consensus among researchers and practitioners within the field, rather than more rigorous evaluation (e.g. clinical RCTs).

Broader reflections

A further and broader conceptual issue is the relationship between a good transition to adult services and a good transition to adulthood. There is an evidence base beyond the scope of this study about what makes a 'good life' for disabled people (though this varies across conditions, demographic characteristics and other contexts) but this agenda should be underpinned by the fundamental question of what the relationship is between a 'good transition' and a 'good life' and the contribution one can make to the other.

While this is not a sole focus of the materials that we have produced, it would be anticipated that the primary materials developed would feed into this broader question.

Future Research

A considerable amount of research has already focused on general principles underlying effective transitions overall. Given the high degree of duplication in this vein, we would suggest a more targeted and in-depth approach focusing on specific transitions, with the aim of identifying effective practices/processes in greater practical detail.

When transitions relate to particular institutions or fields (e.g. within healthcare, education or employment), we would propose a targeted approach to research, characterised by in-depth discussion of disabled young people's experiences and needs, and the identification of effective interventions within this particular field/setting. Greater clarity and understanding could be sought on young disabled people's experiences and needs with regards to social care, education, and employment.

The exploration of more personal issues within transitions would likely benefit from a more free-form approach. This line of enquiry would be underpinned by the issue of what constitutes a 'good life' as well as a good transition for disabled young people, with the flexibility necessary to explore issues of independence and independent living, relationships, and active citizenship. Given the imprecise nature of some of these terms, we would propose asking respondents how they characterise and define such issues, before exploring these topics in greater depth.