Transitions to adulthood for disabled young people: literature review

Summary of findings

This literature review outlines the findings of a review of Scottish, UK and international evidence on disabled young people's experiences of the transition to adulthood and best practice within this field.

This period can be an exciting and hopeful time but is also often stressful and difficult. Common challenges faced by individuals and their families include:^[4]

• Stress and uncertainty for the young person
• Difficulties transferring from child to adult services
• Changes in eligibility for services, and support arrangements
• A sharp drop in support
• Inadequate transition-planning and a lack of clear information with regards to the transitions process
• Inadequate account being taken of young people's views, needs and aspirations
• Stress and difficulties faced by family members relating to the transition process.

On the basis of research conducted with young people in Scotland and beyond, stakeholders' outputs, and a number of academic reviews, there is consistent evidence that positive transitions are characterised by:^[5]

• Early and sustained transition planning
• Holistic and coordinated wrap-around support
• Services delivered in partnership
• Designated keyworkers as a coordinating point of contact and continuity
• Person-centred support and preparation
• Family involvement in planning and decision-making
• Parental and familial support throughout the transition
• The provision of clear and accessible information
• Adequate services, resources and staffing.

Institutional transitions (i.e. from child to adult health and social care services) raised particular challenges, both personal and logistical. It can be taxing for young people to leave familiar and trusted environments and practitioners – with an established understanding of their personal, clinical and communication needs – for often-inferior and disjointed adult services.^[6] This landscape can be difficult to navigate, and established services and arrangements may be imperilled by this change, with support typically falling during this time.

Within institutional transitions, advanced planning with young people and their families again occupies a central place in transition-smoothing. This in turn relies on clear inter- and intra-agency communication and coordination, with a keyworker ensuring continuity and coordination from the perspective of disabled young people.^[7] Trust and positive relationships are also central to effective transitions, so introductory sessions and consistency of staffing are essential.^[8] There is some evidence that the integration of health and social care could help to lessen the challenges associated with transitioning, though this will likely require concerted planning.^[9]

Disabled young people's educational, professional and personal outcomes also appear to lag behind those of their non-disabled counterparts.^[10]

When leaving secondary education, it can be distressing to leave behind friends and teachers, and many disabled young people report a limited range of options, and a common loss of support as they move on to more independent forms of learning and/or living.^[11] Disabled young people often report that they do not feel adequately consulted on their aspirations, with some placed into college courses of limited interest or value to them, and others anxious about their employment opportunities and prospects.^[12]

Disabled young people and stakeholders have voiced concern at their below-average employment outcomes.^[13] There are seen to be limited options and routes into paid employment, as well as evidence of limited progression.^[14] Low societal and employer expectations can constrain people's opportunities, and there are limited tailored training opportunities.^[15] Targeted vocational training, along with work experience and supported employment are seen as effective routes into employment within the literature, though there is evidence of limited and inconsistent opportunities in Scotland.^[16]

The transition to adulthood is closely associated with greater independence, though there are a number of obstacles to achieving this. There appears to be inadequate support for young people to manage their own disability/condition(s) and to live independently.^[17] Housing is also often poorly planned, and young people may struggle to secure their own home.^[18] There is a broad consensus that best practice includes effective life-skills training and guidance relating to self-management, housing, and financial management.^[19]

Finally, disabled young people often lack confidence with regards to social situations and personal relationships, are disproportionately likely to suffer from social isolation, and report that they lack opportunities to be active members of their community.^[20] In line with best practice, transition support and planning should support young people's psychosocial development to establish healthy adult relationships. It has been observed, however, that young people in Scotland lack such opportunities, and that there is little attention paid within research and practice to romantic and sexual relationships.^[21]

Broadly, there is a high degree of consistency within the literature on effective practice. However, there is a correspondingly high level of duplication, with limited evidence and knowledge on more granular practice and detail.