Transitions to adulthood for disabled young people: literature review

Best Practice in Transitions

There is a broad consensus across the literature in support of certain guiding principles within transitions and transition-planning. These are discussed in relation to all sectors and are sometimes formalised as guiding principles (as in the Principles of Good Transitions^[84]) or referred to more generally as good practice.

There is a high degree of commonality in the principles, with a large number of evidence reviews and meta-reviews drawing broadly consistent conclusions about the enablers of good transitions which have been identified. These include:

• 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.

However, the counterpoint to this consistency is a degree of duplication within the evidence base. Much of the established consensus and evidence on best practice reflects broad (and at times imprecise) concepts rather than specific examples of effective practice. Such examples are outlined in sections below.

There is a paucity of rigorously evaluated empirical 'best practice', with guiding principles instead based in large part on endorsements or validation by practitioners within different sectors, and/or by disabled young people.^{[85], [86]} This seems to be, at least in part, due to wide variations in the structure and delivery of interventions, and the multiplicity of possible outcome indicators which makes comparative evaluation difficult.^[87]

This section will outline the main findings relating to good practice in supporting transitions and transition planning, delineating the key factors, noted gaps or challenges in Scotland, and any details of best practice. Findings relating to best practice or challenges within specific sectors (such as healthcare, education, or personal development) are outlined in later sections.

Transition planning

A large body of research – both UK^[88] and international^[89] – has found that preparing a young disabled person for the transition process can significantly improve outcomes in a range of domains.

The creation of a formal transition plan enables advanced planning and coordination of the transition process, and provides information to young people and their families about what they can expect from this process.^[90] Transition planning thus has evident benefits for both young people (in terms of improving transitions and outcomes and reducing uncertainty/anxiety) and for service delivery (increasing efficiency and ensuring effective planning and resourcing).

A meta-summary of qualitative and quantitative research on best practice stressed the importance of "presenting transition as a normal event; clarifying and discussing the [young person's] expectations about the process [and] planning with [them] the specific steps involved in transition".^[91] This approach has been validated by young people themselves; in a recent survey, disabled young people in Scotland who had gone through or were going through a transition to adult services reflected on the importance of knowing what is coming and what to expect.^[92]

This transition plan should set out clearly the services that young people will need and how the activities of these various agencies and practitioners will be coordinated.^[93] The plan should also outline a route map to the young person's desired aspirations, specifying (and linking them to) the services that will help them to make these aspirations a reality.

The evidence strongly indicates that a young person should have a unified transition plan that encompasses and coordinates the various different supports and services that they are likely to engage with. However, in practice, many young people in Scotland lack a formal and/or single transition plan.^[94]

It has been observed by stakeholders that professionals will tend to make different plans (relating to their specialism) for different but often overlapping aspects of the young person's life. This can force parents and young people to repeatedly explain their circumstances, can lead to miscommunication, and/or can duplicate work across public agencies.^[95]

Effective coordination of services is therefore important, not only to ensure a positive experience of transition for young disabled people and their families, but also efficient service-delivery.^[96]

Transition planning should aim to smooth the transition from child to adult services (largely, but not exclusively in institutional transitions) where relevant, for instance by scheduling visits to adult services and introductions to new practitioners, with a view to fostering positive relationships early on.^[97] The evidence indicates that a gradual introduction and integration into adulthood, and adult services specifically, helps to provide reassurance and stability to young people and is preferable to rushed or abrupt transitions.^[98]

For this reason, as noted above, there is a strong consensus across the existing evidence base in support of early and sustained transition planning, both domestically^[99] and from an international perspective.^[100] However, there is some evidence that this is often not the case in practice in Scotland.^[101]

The literature indicates that late transitions (i.e. delayed introductions to adult services) are associated with poor outcomes in terms of achieving independence.^[102] Specifically, there is evidence that late transition planning can constrain future opportunities (e.g. educational opportunities) though there is not conclusive agreement on what 'early' or 'late' mean (see below).^[103] In contrast, the National Institute for Health and Care Excellence (NICE) Transitions Guidelines points out that early transition planning is associated with improved life chances.^[104]

However, the timing and framing of a transition plan is important; it has been found that a premature transition can be associated with an increased risk of psychological issues,^[105] and the Scottish Transitions Forum report that their work with young people, parents and carers has found a common perception that early planning can imply that a transition is imminent which, in turn, causes stress. Therefore, the purposes and gradual nature of early transition planning should be clearly communicated.^[106]

There is some disagreement in the literature, albeit within relatively consistent parameters, about the optimal age at which to begin the transition planning process.^[107] Some academic research has suggested that healthcare transition planning should begin in the early teens,^[108] while other researchers/commentators have suggested that age 14 is optimal.^[109] The latter conforms with the view of ARC Scotland, who argue in their Principles of Good Transitions that "planning should start early [aged 14] and continue up to age 25".^[110]

With regards to transitions themselves, there is a broad consensus in the international and/or academic literature that mid-teens to early twenties is the optimal time to transition from paediatric to adult services.^[111]

Others, however, have countered that age itself is too arbitrary a basis and that the young person's maturity, self-efficacy and developmental stage should determine this.^[112]

In any case, the evidence suggests that transition planning should not be a 'one-off' event as it often is in practice.^[113] Rather, it should be an ongoing process in which plans are refreshed and updated, (at least yearly according to the Social Care Institute for Excellence),^[114] particularly as successful transitions may require experimentation to arrive at the optimal range of supports.^[115]

The evidence on best practice supports the development of transition 'passports' or 'profiles' as practical tools supporting a transition plan. The purpose of these passports is to provide a short and accessible summary of the young person's history, preferences and needs. This provides all relevant practitioners with the necessary information to provide high-quality services and establish positive relationships, and it saves the young person from having to repeatedly explain their circumstances and history.^[116] Passports might include information relating to:^[117]

• The communication needs and preferences of the young person
• Their medical history and self-management experiences
• Their preferences with regards to parental involvement
• Their clinical needs and preferences
• Their strengths, interests and aspirations.

Young people themselves have noted that formalised documents such as a passport can be helpful, albeit on the condition that it is valued, used, read and updated by practitioners.^[118]

While the literature suggests that there is consensus among young people, practitioners, and researchers in support of transition planning, there is nevertheless some evidence that even in cases where (healthcare) transition planning was carried out, a degree of stress and anxiety were recorded, and therefore may be somewhat inevitable.^[119]

Holistic support

Typically, disabled young people will come into contact with multiple practitioners and services (from health, education, social care, and others). Wrap-around support, and effective coordination and planning between these services, are therefore critical, and especially so for young people with multiple or complex needs.^[120] The importance of holistic supports arises consistently in a number of reviews and meta-reviews of the existing evidence.^[121] Disabled young people in Scotland were themselves found to take a holistic view of their aspirations and needs, but (often disjointed) services tended to operate along more service-specific metrics and goals.^[122]

In addition to health and social care, an effective transition will adopt a 'life-course approach' that seeks to support (and plan for) the young person to pursue educational, professional and other opportunities.^[123]

Within health and social care, it is commonplace for paediatric services to adopt a more holistic approach and perspective, whereas adult services may operate in a more siloed manner. Even within these fields, adult services may be fragmented, so wrap-around support and planning are necessary.

However, in addition to these services, a consistent thread in the literature highlights the importance of personal development in any effective transition support. This should include supporting disabled young people to self-manage their condition, facilitating independent living, and providing support with regards to personal relationships.^[124]

Partnership working

From the perspective of services, an efficacious and holistic approach to transition support and planning is widely seen to require effective partnership working between relevant services, agencies and practitioners.^[125] This is associated within the literature on children's services with improved outcomes for young people,^[126] and there is evidence from Scotland that young people and their families credit this type of approach with improved outcomes.^[127]

Effective partnerships are seen to bring together individuals and their families with statutory, private and third sector services to ensure that all the young person's needs are addressed in an integrated fashion.^[128] The value of multi-agency working is widely noted in the academic literature,^[129] and a report by the Scottish Government argued that "Partners who plan in a joined-up way are more likely to ensure that young people can access the support they need to make effective transitions. This means having an effective multi-agency approach and the involvement of universal services, with clearly defined responsibilities".^[130]

Effective partnership working appears especially important within health and social care, given the challenges associated with transitions within and between these, and the established landscape of disjointed services.^[131] The international literature also suggests that joint planning between adult and paediatric services, and primary care can improve the transfer of young people from one to the other.^[132]

The evidence suggests that third sector organisations and advocacy services are especially important in smoothing transitions between paediatric and adult services. The third sector was associated, among professionals and practitioners, with "extraordinary creativity", and was seen to flexibly fill gaps in service-provision (especially with regards to life-course transitions and personal development).^[133] The third sector has been described as having specific strengths and positive working practices/styles, including person-centred communication, effective partnership working and specific knowledge/expertise.^[134]

However, there are a number of barriers to partnership working identified within the UK and international literature. Some commentators have lauded Scotland's positive efforts and progress with regards to improving partnership working,^[135] although a number of cultural, financial and organisational barriers are seen to persist.^[136]

Barriers consistently identified in the literature that can stymy partnership formation and working include differing working cultures and practices between sectors (such as health, education, and social care),^[137] resource constraints, poor inter-agency and inter-personal relationships, and inadequate information-sharing.^[138] Performance metrics often do not align between services, further complicating issues.^[139]

By contrast, the evidence indicates that the enablers of effective partnership working include:^[140]

• Leadership and shared values
• Financial (rather than simply structural) integration
• Community-based, bottom-up partnership formation and service-delivery
• Good communication between professionals and services
• Inter-agency and inter-personal trust
• Opportunities for shared learning, information and practice sharing, and co-location
• Effective information-sharing and the use of appropriate outcome metrics (rather than service inputs and outputs)
• A focus on disabled young people and their needs.

Knowledge-sharing occupies a central role in partnership formation and working, though poor inter-agency communication and poor data-sharing have been seen to undermine partnership working.^[141] Workshops allowed for the exchange of knowledge and practice between service providers, allowing for and facilitating multi-agency working.^[142] One example from Scotland, the Scottish Transitions Forum, was reported to provide peer-learning and mentoring opportunities for practitioners to share good practice across professional disciplines.^[143] This may include effective interventions, and knowledge of the relevant service landscape and policy context that might impact on transitions.

As noted above, a passport containing important information relating to health, care and communication needs, as well as the young person's circumstances and aspirations, can facilitate information-sharing between practitioners and help to build efficient and person-centred services. The use of a passport allows for seamless referrals and helps to foster positive relationships, while at the same time avoiding the frustration for the young person and their family of having to repeat their story to multiple practitioners. However, maintenance and use of the passport in practice was not always realistic or forthcoming.

Keyworkers

There is broad support within the existing evidence base for a keyworker model that provides continuity and coordination during this complex and often stressful process; this spans clinical guidelines^[144] and (meta-)reviews of the existing evidence,^[145] as well as young people and stakeholders' endorsements.^[146]

This approach is seen to have various benefits: the keyworker model provides young people and their families with a single point of contact, improving the navigability of services and reducing stress on the families;^[147] it supports the coordination of services, and provides accountability for transition planning;^[148] it is seen as good value for money;^[149] and it has been associated with improved outcomes.^[150]

Young people and their families in Scotland have associated the keyworker model with improved outcomes in both qualitative^[151] and quantitative research.^[152] In a survey of parents and carers in Scotland, 20% of respondents identified a keyworker as the single biggest enabler of a smooth transition.^[153]

The keyworker model provides young people and their families with a designated professional to answer their questions and coordinate transition planning. There is evidence from stakeholders that keyworkers can provide much needed emotional support, and build positive rapport and trust with young people,^[154] which is in turn associated with improved outcomes in transitions.^[155] This model also facilitates accountability. It has been argued that in the absence of a designated professional, parents routinely end up taking responsibility for transition management (and may have to give up work to do so), prompting considerable familial stress.^[156] Alternatively, the responsibility may fall on schools or children's services, with little regard to what happens when the young person leaves these behind.^[157] There is also some evidence that that some healthcare practitioners are resistant to devising a plan, and some parents and young people reported practical difficulties maintaining it.^[158] It has thus been suggested that a lack of clear accountability for transition planning can mean that nobody takes the necessary action,^[159] an eventuality that the keyworker model can insure against.

For these reasons, both clinical guidance and stakeholder groups have called for the assignation of a designated keyworker.^[160] There is a broad consensus that young people should have a role in choosing their keyworker, though assignation may also involve bodies such as local authorities.^[161] Also consistent within the existing evidence is an acknowledgement that the keyworker reflects a role rather than a job title,^[162] and that this professional may be drawn from a range of professional settings. The Social Care Institute for Excellence stipulates, for instance, that "This person should be one of an existing keyworker/transition worker, a health, social care or education practitioner, a GP, a youth worker, an allied health professional or a nurse."^[163] There were mixed findings relating to who young people are most likely to choose as their keyworker, but the importance of involving young people in this process was stressed consistently.

Person-centred support

Person-centred support is a consistent thread through much of the evidence. This is advocated by stakeholder groups,^[164] as well as in a large body of academic research^[165] wider reviews,^[166] and clinical guidance.^[167]

Person-centred support is seen as an often-imprecise term that is not always applied in practice.^[168] According to NICE guidelines, person-centred approaches should treat the young person on an equal footing, supporting them and their families to make decisions about their own support, and addressing all relevant aspects of their transition to adulthood.^[169]

There is evidence that person-centred and/or co-produced services are more effective and bring about improved outcomes (in a range of settings from healthcare to education and employment), and that they help to secure the most needed and appropriate services.^[170] Evidence points to positive outcomes for children who take a more empowered role in their transitions.^[171]

Relatedly, strengths-based planning, advocated by the National Institute for Health and Care Excellence, should work with young people and draw on their interests, assets and strengths in transition-planning.^[172] This positive framing is important given previous research findings (both domestic and international) that attitudes and expectations towards transition are partially predictive of transition outcomes.^[173]

However, it has been noted that person-centred planning may require communication support,^[174] and/or support to develop young people's confidence to engage in complex and often technical decision-making.^[175]

Research with disabled young people in Scotland supports the importance of person-centred planning and services to a smooth transition. A survey of young people found that 43% identified more person-centred support as the single thing that would be helpful in improving their transition from school,^[176] and young people themselves have highlighted the importance of being/feeling listened to in transition-planning, especially in their mid-teens.^[177]

However, despite the evidence supporting the effectiveness and importance of person-centred support, there is also evidence that this ideal is not always achieved. For example, it has been reported that disabled young people and their carers do not have their voices taken into consideration and routinely feel disconnected and/or excluded from the planning and delivery of services that affect them.^[178] Disabled young people in Scotland also reported that they are routinely not asked even basic questions relating to their interests or aspirations, contrary to the principles of person-centred and strengths-based planning, resulting in them being placed into unsuitable or suboptimal settings.^[179] A recent consultation heard from stakeholders that transition planning and support are routinely resource- and service-led rather than person-centred.^[180]

Family involvement

Relatedly, there is widespread evidence that family involvement and inclusion are seen as being central to effective transitions and transition-planning. Families are hugely important to disabled young people and often their main source of support,^[181] especially among young people with learning and developmental disabilities.^[182]

This echoes the findings of a recent survey of disabled young people in Scotland, which found that parents played a larger role than any practitioners in giving advice and guidance.^[183] Their active inclusion in discussions, transition planning and decision-making is therefore widely seen as essential, and this features in clinical guidance.^[184]

Families often serve a vital care-giving role during and beyond the transition process, and a large proportion of disabled young people continue living with their family until later in life.^[185] Families therefore have an indispensable role to play in planning and logistics.

Reviews of international evidence have also found that parental expectations and familial involvement are significantly associated with transition outcomes (including education, employment and general wellbeing).^[186] There is, however, evidence that parents' expectations of disabled children's post-school opportunities lag behind those of the parents of their non-disabled counterparts.^[187]

Various academic reviews and meta-reviews have found family involvement to be a common enabler of successful transitions.^[188] The Health and Social Care Alliance have therefore called for a Family Group Decision Making model of transition partnership, in partnership between young people, their families and service-providers.^[189]

While self-management and independence are seen as important factors in transitions to adulthood for disabled young people, it has been noted that "family members remain important in this process [and that] such involvement is normal, not dysfunctional."^[190]

Nevertheless, excessive parental involvement has been identified in certain sources and reviews as a barrier to smooth transitions; it has the potential to sour relationships with services and practitioners, and obstruct transitions to adult services.^[191] It is therefore argued that parental and familial involvement should be 'appropriate'^[192] and NICE guidelines stipulate that a young person may not want their family to be (overly) involved in transition planning.^[193] ('Appropriate' parental involvement has been defined as meaning "that the young person and their parents were happy with how much and the way in which the parents were involved.")^[194]

Parental & family support

Underpinning much of the above, positive family relationships are seen as key bridging factors in a smooth transition.^[195] However, transitions can be a time of considerable stress and anxiety for parents and family members of disabled young people.^[196] Previous research has found that transitions are often perceived negatively by parents,^[197] and can prompt uncertainty and anxiety.^[198] Parents frequently report concerns about the capacity of the young person in question to adapt to adulthood, their difficulty navigating often disjointed services, pressures on family wellbeing and finances, and concerns about the long-term outlook.^[199]

It often falls to parents to coordinate their child's transition, which can prompt considerable stress as they seek to navigate and negotiate with disjointed services.^[200]

Another common source of stress occurs when young people leave school, as this can often entail a sudden drop or cessation in care they receive. As a result, parents may find themselves under pressure to leave work to provide substitute care, which can in turn prompt serious financial difficulties and/or concern.^[201]

For these reasons, parental support is a commonly identified aspect of best practice in transition smoothing and planning. In practical terms, this may entail the provision of respite care to support parents and carers,^[202] as well as emotional support,^[203] training in stress management, relaxation exercises, supporting them to build self-efficacy and self-esteem.^[204]

Information-provision

A widely observed challenge for disabled young people and their families is difficulty navigating the complex landscape of services, funding and policy initiatives with regards to transitions.^[205] The issue appears particularly pronounced at the interface between paediatric and adult services.^[206] Best practice therefore encourages the sharing of clear, accessible and timely information with young people and their families.^[207]

A review of this context in Scotland reflected that "It is difficult for families and sometimes professionals to map a clear path through the raft of policy initiatives in this area and to understand how these join up. The lack of a concise policy guide setting out service providers' responsibilities and young people's rights is a barrier to smooth transition."^[208] While the research found a broad consensus that individual transition policy initiatives were positive and appropriate, it noted that disabled young people, planners and practitioners often struggle to understand how these relate to one another. Support for existing initiatives tended to be framed in very general terms, often relating to agreed guiding principles.

Research with disabled young people and their parents found that they routinely lack appropriate and accessible information, with a quarter of parents and carers identifying a lack of support and information as the most difficult thing about transitioning, and 26% said that clearer explanations of their options and supported opportunities would make the single biggest difference.^[209]

In general, young people in Scotland have reported a lack of information about leaving school, complex bureaucratic processes (including educational applications and exams) and a shortage of work opportunities and guidance.^[210]

Disabled young people in Scotland are appreciative of clear information relating to their transition, though the information needed varied somewhat with age: the need for information in general was greatest among 18–20-year-olds, and often referred to practical information about life going forward. Respondents aged 14-17 focused largely on information relating to life-skills and leaving school, while respondents aged 21-25 prioritised information about their rights and opportunities.^[211] The transition process is a long one, incorporating institutional, life-course and personal changes, and the relative needs and priorities of these change accordingly.

Others have suggested that information should move from being generalist/broad to more technical/specific over the course of the young person's transition.^[212]

In addition to causing anxiety and stress, the inadequate provision of information can cause young people and their families to be/feel excluded from (informed and effective) decision-making with regards to their transition to adulthood.^[213]

In line with best practice, there are calls for improved information and transparency with regards to local services and pathways (including both statutory and voluntary sector services) to assist people to navigate an often-complex landscape, including through effective signposting.^[214] (This may be a responsibility of a designated transition worker or keyworker.) The exact extent of this may, however, vary between disabled young people depending on their needs; in some cases, this may refer to intensive one-to-one guidance, while signposting or information packs may suffice for others.^[215]

Asset mapping, developed in partnership between practitioners, local and national government, and wider statutory services, has been shown to be effective at improving transparency and awareness of services available at a local level. Local transitions fairs can also provide a forum for practitioners and third sector organisations to showcase and share information on the supports available to young people and their families/carers.^[216]

The evidence underlines the importance of such information using consistent, common and accessible language to simplify services to young people and their families/carers. It has been noted that certain terms (e.g. 'keyworker' and/or 'co-production') used in transitions practice can have unclear, multiple and/or competing meanings.^[217] Best practice guidance states that any information must conform to the communication needs and developmental stage of the young person in question (including provision in accessible formats where necessary).^[218]

Adequate services, resources and staffing

There is substantial evidence that services for disabled young adults during their transition from paediatric to adult services are not always appropriate, sufficient, or available.^[219] The transition to adult services can often result in changes to service-eligibility up to and including complete loss of service provision (particularly common in social care, but not exclusively),^[220] There is also evidence of inconsistencies in the application of eligibility criteria between areas, and between children's services compared to adult services.^[221]

A survey of young people found that the availability of support was the most important factor in their transition, but respondents also cited a lack of support in general, and support to enter work and/or gain experience of work more specifically.^[222]

A report by the Scottish Government highlighted difficulties faced by adults with learning disabilities and complex needs, finding evidence of a lack of specialist local services, and urging advanced planning to ensure that adequate services and resources are available ahead of time.^[223]

Stakeholders and young people themselves report that the already difficult transition can be exacerbated by "organisational processes taking priority over individual needs."^[224]

In order to deliver these high-quality services, resourcing is seen as essential.^[225] Stakeholders have similarly argued that to achieve the best outcomes for young people, it is good practice to separate the assessment process from budget considerations.^[226]

Nevertheless, some stakeholders have suggested that transitions (and associated supports) are often resource-led rather than person-centred.^[227] There is also evidence that inadequate resourcing can undermine partnership working,^[228] and it has been suggested that recent cuts to local authority funding mean that only those with more substantial/critical needs are eligible for much-needed support.^[229] Recent research has shown that services in certain local authority areas in Scotland are already operating at full capacity or face funding constraints, ultimately limiting the provision that is available in practice to young people and their families.^[230] The Health and Social Care Alliance, for instance, has called for improved resourcing of services beyond the age of 17, including respite services for parents and carers.^[231]

The central importance of highly trained and skilled staff is widely recognised.^[232] Positive relationships and maintaining interpersonal trust are identified across the literature as a further enabler of positive transitions.^[233]

'Youth-friendly care' is similarly seen to depend largely on appropriate staffing, with staff attitudes, communication and medical competency identified as key prerequisites for a high-quality service within the literature.^[234] Knowledgeable, sensitive and approachable staff were validated by young people themselves, and are associated with improved outcomes and services.^[235] Accessing knowledgeable and relevant staff with an understanding of complex health conditions has been identified as a further enabler or barrier to successful transitions.^[236]

There is evidence, however, that practitioners in Scotland do not always have a clear understanding of the needs or abilities of disabled young people, and especially those with learning disabilities.^[237] For this reason, a number of stakeholders have called for – and noted a shortage of – training packages and materials for practitioners and professionals to work with, understand and support disabled people and those with complex needs.^[238]

Robust evaluation and monitoring

It has been noted that at present there are inadequate evaluation and monitoring procedures in place in Scotland and the United Kingdom.^[239] There is evidence of scepticism from young people, families and practitioners with regards to the effectiveness of existing evaluation processes, and it has been suggested that current metrics track "destinations rather than outcomes" (such as the proportion of disabled young people in employment, rather than the "extent to which the young person was being supported into becoming an active citizen").^[240]

In the absence of these, it is difficult to identify further best practice or to derive more granular detail beyond what is already known. It has been noted that interventions and outcome metrics are often not standardised across different programmes and that evaluation procedures are not always robust, which can limit opportunities for learning.^[241]