Transitions to adulthood for disabled young people: literature review

Common Experiences in Transitions

This section outlines common experiences relating to transitions in general. Later sections of the review will explore experiences relating to more specific (institutional and life-course) transitions (e.g. within healthcare or education).

The term 'transition' to adulthood is defined by ARC Scotland as referring to "the period when young people 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."^[25]

Transitions to adulthood can be a rewarding and exciting time for disabled young people as they seek to gain independence,^[26] and many disabled young people in Scotland express optimism and excitement about this time in their lives.^[27]

However, it is established within the literature that transitions to adulthood and adult services can be extremely challenging and stressful.^[28] A number of shortcomings in the service and policy landscape in Scotland and the UK have been identified over time, and these are outlined throughout this review.^[29] Experiences of transitions to adulthood have been variously described by those with experience of the process as 'terrifying', 'a black hole', and 'a scary void'.^[30]

While the literature suggests that there are generally positive experiences of children's services (especially but not exclusively with regards to child health and social care), there is a consensus that experiences of the transition to adulthood are decidedly more negative.^[31]

There is a high degree of consistency to the findings within the existing literature, whether domestic or international, on young people's experiences of transitions. Common challenges faced by young people, both in Scotland^[32] and beyond,^[33] include:

• General 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.

Moving from children's to adult services (in general)

According to the literature, a key challenge within the transition to adulthood relates to the move from child to adult services, as this process is often disjointed and poorly coordinated. The move to new adult services can prove challenging on various fronts.

It can be stressful and emotionally difficult to leave behind familiar and trusted practitioners who have an established rapport with the young person and their family, and an in-depth knowledge of their condition(s), medical needs, and clinical preferences. Many young people and carers struggle with concerns that new service providers may not fully understand their needs,^[34] and it can prove frustrating and distressing for young people to repeatedly have to explain their circumstances to new people.^[35] This applies in particular to clinical settings, but similar experiences are reported with regards to education and other sectors.

Young people and their families can find adult services difficult to navigate, as they are often delivered in a more disjointed fashion.^[36] Where paediatric health and social care services tend to operate in a more joined-up manner, adult services tend to involve individual specialisms operating more autonomously and often located on different sites.^[37] Adult services (in general) also tend to assume a greater level of autonomy, with a greater onus placed on the service-user to arrange and manage their support. It is also common for disabled young people to engage with multiple services to meet all their distinct needs. However, during their transition to adult services, poor inter- and intra-agency communication, coordination and collaboration have been highlighted in the evidence from Scotland,^[38] the UK,^[39] and beyond.^[40] In Scotland, this has been observed not only by disabled young people, but also by practitioners who have reported that a lack of joined-up working is the largest impediment to supporting smooth transitions.^[41]

It can thus often fall to the young person in question or their family to attempt to coordinate disjointed services and supports. Given the complexity of the health and social care service landscape, and the absence of clear, accessible information and advice, this can result in considerable stress for young people and their families.^[42]

Differences in culture can compound these challenges. Adult services tend to treat service-users as more autonomous, and thus expect a much greater degree of self-sufficiency than young people and their families may be accustomed to.^[43] If parents / carers are not adequately involved in discussions and decision-making about the transition process, this can result in stress for young people and their families.^[44]

Young people's eligibility for services and supports may change when they move into adult services, even when this is neither necessary nor desired^[45] (this is particularly common in social care where eligibility can shift considerably). Hard-won arrangements that suit the young person and their family may have to be renegotiated when moving to new services.^[46] Eligibility criteria often vary between child and adult services and / or between local areas,^[47] which can lead to a sudden cessation of support, especially with regard to day services and respite services.^[48] Adult social care, in particular, may be limited to only the most critical cases.^[49]

Inadequate planning and information

In a recent review of the Scottish transitions landscape, the Fraser of Allander Institute reflected that "transitions do not need to be difficult if they are well planned and well managed. However, the evidence suggests that this is rarely the case"^[50].

While thorough, early and sustained transition planning is widely accepted as best practice,^[51] there is evidence that this is routinely not achieved in practice in Scotland.

In a survey of parents and carers of disabled young people carried out by ARC Scotland, three-quarters of respondents reported that their child had no formal written plan to support their transition.^[52] A recent Scottish Parliament consultation on transitions also heard that transition planning for disabled young people in Scotland lacks a consistent, coherent approach.^[53]

Some studies and commentators have suggested that clear accountability for transition planning and preparation is lacking.^[54] This responsibility often falls between child and adult services. In the absence of a designated professional, this responsibility can fall variously to children's services,^[55] educational establishments,^[56] and the young person's parents. A lack of clear accountability for transition planning can mean that nobody takes the necessary action to ensure that transitions take place in a coordinated way.

Poor planning and preparation can have various adverse consequences; it can result in young people being placed into inappropriate settings, including young people receiving support and treatment alongside much older and sicker individuals;^[57] it can constrain opportunities with regards to education and employment if the necessary prerequisites are not achieved in advance;^[58] and it can lead to inadequate resourcing of services.^[59]

Difficulties can also arise when transition plans are not referred to or updated over time, rendering them obsolete.^[60] Some commentators in Scotland have pointed out that transition planning is often treated by practitioners as a singular event rather than a process.^[61] However, transitions are rarely simple and linear, and the benefits of flexibility, 'tasters' and trialling different approaches and services have been noted in the evidence.^[62] Transition plans inevitably need to be updated to remain relevant and targeted as a young person's needs, expectations and aspirations change. Young people can find it difficult to maintain their plan by themselves, and support to do so is not always forthcoming from practitioners/professionals.^[63] Indeed, young people in Scotland report that planning sessions are often not ultimately used for these purposes.^[64]

When it is carried out, there is evidence that transition planning routinely lags behind established best practice. Disabled young people and researchers frequently report that only a narrow range of options are presented to them,^[65] at times in an apparent and/or perceived effort to keep them supervised/occupied, rather than to provide stimulating or valuable opportunities.^[66] This can, for instance, see young people placed into educational courses that are of little value or interest to them. There is some evidence that practitioners and professionals can underestimate the abilities, assets and aspirations of young people, and that they may consequently not achieve their full potential.^[67]

There is further evidence that young people's voices are routinely not taken into consideration within transition planning.^[68] Some have reported that they are routinely not asked even fundamental questions relating to their interests, hobbies or aspirations.^[69] This can result in frustration, disengagement and apathy, and is evidently incompatible with person-centred 'strengths-based' planning.^[70]

A further issue is one of inadequate information, advice and guidance to navigate the complex transitions landscape. Young people and their families are routinely left unprepared as to how their support services and treatments are likely to change. A survey of parents carried out by ARC Scotland reported that a quarter of parents of disabled children said that a lack of support and information had been the most difficult thing about their child's transition from school.^[71]

It has been suggested that there is broad support from young people and their families for the various policies and initiatives relating to transitions to adulthood, but their sheer number can prove overwhelming and there is no clear or accessible guide for navigating these.^[72]

Parental & familial challenges

Transitions to adulthood and adult services are difficult not only for disabled young people themselves, but also for their families.^[73] This process can put enormous emotional strain on parents who worry about their child and often, of necessity, take on considerable work in addition to their other parental and professional commitments. While there is limited research exploring the relationship between poverty and engagement with transitional support interventions for young disabled people, it has been noted that those with limited resources face challenges with transitions. ^[74]

The literature suggests that the transition to adulthood can be a hopeful and exciting time for parents, though it is also common for them to worry about their child, particularly their social transition, educational and professional opportunities, and potential isolation.^[75]

Parents can find the process emotionally taxing due to concerns for their child's wellbeing, opportunities and outcomes. Leaving behind familiar practitioners and services can be stressful for parents, especially if they fear that adult services lack a clear understanding of their child's condition(s) and needs.^[76] They may experience a tension between wanting to protect their child and wanting to promote independence.^[77] (There is, however, also some evidence that overly protective parents can hinder effective transitions or constrain opportunities.^[78])

The transition process can also have serious adverse impacts on parents themselves. In the absence of clear accountability on the part of service providers, parents often become charged with the role of managing and coordinating diverse and disjointed services. This can lead to overload and burnout.^[79]

This can prove especially stressful when arrangements, resulting from negotiation and experimentation over many years, are imperilled or brought to a halt by the transition to adult services. Parents who have secured a balance of appropriate supports of mutual benefit to themselves and their child can find themselves back at square one.^[80]

These challenges can be compounded by the loss of care, support and respite services that leaving paediatric services and/or school often entails. There is evidence that some parents may feel pressured to leave work to care for their child, thus resulting in significant adverse financial impacts on the family.^[81]

Finally, despite the importance of involving parents in transition planning,^[82] parents (like young people themselves) can find themselves excluded from transition planning discussions and decision-making which can be emotionally distressing.^[83]