Transitions to adulthood for disabled young people: literature review

Institutional & Life-Course Transitions

This section of the literature review will summarise findings related to common experiences, and best practice within more specific transitions. This includes 'institutional' transitions (i.e., between paediatric and adult health and social care services) and 'developmental' or 'life-course' transitions (i.e. those relating to education and employment, as well as independent living, among others). Some of these may echo issues and findings outlined in the previous section, but will provide greater and more specific detail pertaining to the sector in question.

Our review reinforces previous findings that much of the existing evidence and literature relates to health-related transitions, with much lesser attention to life-course transitions.^[242] Health and social care are often not clearly delineated in the existing literature; much of the evidence relates to healthcare specifically, though with an implicit relevance to other clinical settings such as social care. It is, however, not always clear to which institutional/clinical settings authors are referring.

Within the literature on life-course transitions, there is also a greater focus on employment and education than independent living, personal relationships and active citizenship where the evidence is more limited.

The transition from child and paediatric to adult health and social care services can be fraught and challenging. This issue is not isolated to Scotland and the United Kingdom, but commonly observed across the international literature.^[243] The following sections will explore these transitions in greater depth. While they have been thematically separated for the purposes of this report, there is (seen to be) a fair degree of overlap between these.

Healthcare

Common experiences

At an emotional and personal level, it can prove difficult for young people and their families to leave behind familiar and trusted practitioners and professionals with a thorough understanding of the young person's (clinical and communication) needs and preferences. Young people often form a strong rapport and sense of trust with paediatric practitioners, and it can prove distressing to leave these behind.^[244] A reluctance to do so has been observed among young people as well as their parents and practitioners, though this can hinder a smooth transition.^[245]

It can also be distressing for young people to lose contact with their peers, and to suddenly find themselves instead receiving care alongside much older and more infirm patients.^[246]

A considerable body of literature points to the disorientation that many young people and their families face when attempting to navigate new services. In contrast to children's services, working practices and cultures within adult healthcare services are characterised by more siloed working,^[247] and an assumption of greater self-efficacy of disabled young people in managing their care.^[248] This can present logistical challenges with young people receiving treatment and support at a range of different locations, sometimes situated far from their homes.^[249]

It has also been widely observed that communication and coordination between child and adult services and between specialisms is often poor.^[250] This can make services difficult to navigate particularly given adult services' tendency to treat young people as independent and autonomous.

These procedural and cultural changes can be difficult to adjust to and, having established an understanding of and familiarity with child services over years, it can be disheartening and stressful for young people and their families to lose this knowledge.^[251] Relatedly, established arrangements are often the result of concerted effort and experimentation; with the move to adult services and changing eligibility, these hard-won arrangements can be lost.^[252] It is common for young people to lose eligibility for certain supports when moving to adult healthcare services, which leaves them with more limited care and support options.^[253] While this is an arguably larger and/or more common issue within social care, there is evidence that it can also apply to healthcare. Children and young people with complex care needs and their families who experience many transitions over the life course may be especially vulnerable to discontinuity or gaps in care. ^[254]

Planning for healthcare transitions is also often inadequate. In the absence of advance planning, the transition can come as an unwelcome surprise, though conversely, delays to handover can leave young people and their families in a state of limbo in-between child and adult services.^[255] There is evidence that transition planning lacks clarity and consistency, and that accountability for it is unclear. Healthcare practitioners were found to resist formal planning,^[256] and/or to deem other services responsible for this.^[257]

Best practice

It has been argued that best practice can be difficult to identify conclusively, in part given variation in delivery and evaluation,^[258] and that findings may not generalise beyond specific fields/specialisms.^[259] However, a number of common elements of effective practice have been identified within the literature with regards to smoothing institutional transitions including adequate planning, resourcing and coordination.^[260]

Advanced preparation and planning are a key component of best practice, and it is argued that both child and adult services should be involved in this process,^[261] and that it should include both health and social care services at the least.

Positive relationships and maintaining trust are widely seen as important in institutional transitions.^[262] For this reason, joint sessions and introductory meetings between child and adult services where needs and preferences can be explained to new practitioners, and positive inter-personal relationships formed, are beneficial.^[263] Joint sessions have been shown to help reduce the chances of disengagement by the young person in question.^[264] There is also some evidence that paediatric practitioners can be reluctant to pass young people on to adult services, and also that adult practitioners may be reluctant to take on young people, which introductory sessions and gradual handovers can ease.^[265]

As part of the planning process, it has been suggested that a keyworker and GP should be identified to ensure that young people have a point of contact and continuity throughout their wider transition.^[266] The involvement of transition nurses is widely identified as an example of best practice in transition-smoothing for young people.^[267] For children and young people with complex care needs for whom a carefully tailored planning strategy is particularly important, it has been suggested that the potential value of a nurse-led service in delivering the transition process should be explored.^[268] This role serves to coordinate transitions between services, including through arranging introductory sessions, and provides a consistent point of contact for queries, advice and information.^[269] Transition nurses/workers have been validated by young people themselves as a valuable support within institutional transitions.^[270]

Coordination may be underpinned by tools such as health passports which are found to be effective at promoting positive relationships, high-quality clinical care, and efficient exchange of data, all of which are appreciated by young people.^[271] However, while young people are supportive of health passports in principle, they are not always clear of their purpose and there is some evidence that they are not routinely used in practice.^[272]

Services and practitioners may also benefit from transitions managers who can oversee transitions from an organisational perspective to ensure smooth functioning and adequate resourcing.^[273]

There is evidence that consistency of staffing is generally appreciated by young people, who respond positively to seeing the same staff at each session. This can save frustrating or demoralising repetition of circumstances. One review, in fact, found that young people valued seeing the same staff at each appointment more than having a keyworker.^[274]

The evidence on best practice also points to a careful balancing act between encouraging independence and self-management, tempered with appropriate parental involvement. Medical and clinical self-efficacy is seen as important for successfully navigating the transition process and gaining independence more generally,^[275] and excessive parental involvement has been identified by researchers and practitioners as a barrier to smooth transitions.^[276] However, family involvement in planning and decision-making is also associated within the literature with improved outcomes,^[277] and indeed, one meta-review suggests that parents can act as vital facilitators in transitions.^[278] '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."^[279]

Providing support and information to parents appears central to their positive involvement.^[280] This might include courses and advice on transitions for parents and family members, emotional support, and respite services.^[281]

The use of age-banded clinics and transition wards recur in the literature on best practice in healthcare transitions.^[282] These allow practitioners to develop the necessary skills and knowledge to work with this particular age group, avoids co-locating young people with much older and sicker individuals, and allows them to form relationships and support networks with peers.

Social Care

Common Experiences

A number of the experiences and difficulties commonly faced by young people in social care transitions are consistent with those experienced in healthcare settings. However, overall there is a relative paucity of information and evidence relating to social care as distinct from, and compared to, healthcare.

These include issues associated with leaving behind familiar faces – both practitioners and other young people – and difficulties receiving treatment alongside much older people.^[283] Another such example is the difficulty navigating more complex and often disjointed adult services, where information-provision is often inadequate,^[284] and where a greater degree of clinical autonomy and self-management is assumed.^[285]

This can be an especial challenge given the frequency with which eligibility to certain supports can change between child and adult services. While this is also an issue in healthcare, it is an especial challenge in social care. Eligibility for care is often limited (given cuts to funding) to those whose needs are considered critical.^[286]

Much of day-to-day care (in the informal sense of the word) of young people is delivered by schools given their hours of operation. Thus, there is a close and important connection between education and social care when it comes to transitions, whereby young people - leaving school and moving to, or ineligible for, adult social care - may experience a very sudden drop in or cessation of support. Between the transition to adult social care and leaving school, the support young people receive can fall sharply and young people may rarely come into contact with public services if they are ineligible for local authority social care.^[287] Respite care is seen as a particularly inaccessible service for many disabled young people and their families, which can prompt considerable challenges for parents.^[288]

Similarly, inadequate social care provision and eligibility can have significant implications for the feasibility, sustainability and desirability of independent living (see sections below).

Communication between health and social care services, as well as between different actors and agencies within social care and social work, is often sub-optimal.^[289] Poor partnership working is seen to stymy smooth transitions, and can be disruptive and disheartening for young people.^[290]

There was also evidence of shortcomings in social care services. Namely, that certain key services for disabled people are missing; for instance, a recent consultation heard that there is very limited and inconsistent communication support in social care settings for those with sensory disabilities.^[291]

Best Practice

As noted with respect to healthcare, but also applicable to social care transitions, a number of common elements of effective practice have been identified within the literature with regards to smoothing institutional transitions including adequate planning, resourcing and coordination.^[292]

A number of key factors have been identified in ensuring smooth transitions. These include concerted panning, the right supports and systems, highly-trained staff with an understanding of social care and adolescent development, multi-agency partnership-working, and a focus on individuals and their families.^[293] Many of these are redolent of the aspects of best practice identified with regards to healthcare transitions, but are expanded upon below.

Scottish Government guidance prescribes such initiatives to smooth transitions; namely, advanced planning and the designation of a coordinating lead professional,^[294] and it has been suggested elsewhere that this planning should improve young people's understanding of (and manage expectations of) adult social care services.^[295]

It has been suggested that transitional services that span child and adult services can help to protect the wellbeing of young people and reassure them.^[296] This is also seen to maintain and protect trust in practitioners and services, which is seen as central to effective transitions.^[297] Partnership working is widely stressed in the evidence on best practice, and it has been suggested that social care transition planning should include both adult and child services.^[298]

Inter-agency communication can, however, often be lacking, including between child and adult services, but especially between health and social care services.^[299] Advanced preparation and planning are a key component of best practice, and it is argued that both child and adult services should be involved in this process,^[300] and that it should include both health and social care services at the least.

There is some evidence of poor integration both within social care (between child and adult services), and between social care and other services, due in part to gaps in coordination and budgets.^[301] For this reason, the appointment of a 'lead coordinator' (also termed/analogous to a keyworker or transition coordinator) is seen to be an effective step in transition-smoothing.^[302] Others have stressed the particular value of social workers and social care practitioners in coordination and planning.^[303]

Improved communication and information-provision, as well as positive relationships and maintaining trust are widely seen as important in institutional transitions.^[304] This can also promote information-exchange between child and adult social care services which can improve service outcomes for users. However, information exchange is important not only for service-providers, but also for young people and their families. Especially given the complicated social care landscape, it has been suggested that clear information-provision is effective and helpful for young people and their families.^[305]

More broadly, the benefits of co-production within social care (between disabled young people, providers and wider practitioners/stakeholders) have been identified and stressed within the literature. The Health and Social Care Alliance suggest that "Young people have a direct contribution to make to service improvement" and notes the value of "the expertise and flexibility within the third sector in providing transitional bridges in health and social care services".^[306]

The paucity and importance of respite services have been noted across the literature, with a clear recognition within the existing evidence base of the need for support for family-members in the form of short breaks.^[307]

Integration

While somewhat distinct from transitions, the issue of health and social care integration has evident and important implications for health and social care transitions that we seek to briefly explore and summarise here.

Given the complexity and fragmentation of the health and social care landscape, it has been suggested that greater integration – of health and social care, and of child and adult services – could be beneficial to disabled young people during their transitions.^[308] Integration at a local level in Scotland has shown promise in simplifying the landscape and improving young people and practitioners' experiences and outcomes,^[309] as has joint-planning and partnership delivery,^[310] though obstacles remain in place. Stakeholders and researchers have also warned that integration is not guaranteed to improve disabled young people's experiences or outcomes if they are not adequately considered as part of the process.^[311]

Within the literature, a number of barriers and enablers to effective integration have been identified. Impediments include inadequate resourcing, poor inter-agency and inter-professional communication and coordination, IT systems and data-sharing.^[312] It has also been also noted that there is a paucity of practical materials to guide integration.^[313]

Common enablers of integration identified, include:^[314]

• Keeping the focus of integration clearly on improving experiences for service-users and allowing them to shape their journey
• Strong leadership to oversee integration
• Formulating a shared vision of integration and service-delivery
• Bottom-up consensus building in lieu of top-down reorganisation
• Building trust and understanding between different professional groups and organisations (through shared learning, co-location, among others)
• Developing data sets that give insights into people's outcomes rather than service inputs and outputs
• Communicating the purpose, aims and mooted benefits of integration to practitioners and service-users in advance

Pooled budgets, revised organisational and managerial structures, and joint planning were also deemed necessary to sustain this.^[315]

Education

Common experiences

Leaving secondary school is often an exciting and promising time for young disabled people. In a survey of young people in Scotland, half reflected that they felt ready to leave school, and over a quarter expressed excitement at taking greater control of their lives.^[316] While young people have drive and aspirations,^[317] there is evidence that these are not always met in practice.^[318]

Leaving school can also be a personally and emotionally challenging time for disabled young people. Uncertainty and anxiety about the future are common; these can impact on people's mental health and wellbeing, and are frequent concerns among parents.^[319]

It is also common to lose contact with friends and peers which, in addition to being emotionally challenging, can leave them with more limited support networks.^[320] In addition, young people can struggle to leave behind familiar teachers who have often developed a strong understanding of their needs.^[321]

Some of the biggest concerns and difficulties flagged by young people leaving school relate to the loss of support and routine that this entailed, and moving into unfamiliar environments.^[322] Leaving school often sees a sharp fall in the provision of support, from the high levels provided in schools (and especially in additional support schools) to a much more hands-off approach at colleges and universities and in the workplace.^[323] This was also a common concern among parents.^[324] This fall in support is often especially sharp for people with learning and developmental disabilities, especially if they do not qualify for support from social care services.^[325] (The shift in pedagogical modes from hands-on to much more autonomous learning can also be a challenge for those continuing to college or university.^[326])

It has been observed that upon leaving school, disabled young people are much less likely to engage regularly with public services,^[327] and the limited availability of post-school local authority support opportunities has been noted in qualitative research with young people, parents and practitioners.^[328] The Fraser of Allander Institute have reflected that many young people feel 'abandoned' upon leaving school, and that the cessation in support they receive does not prepare them for adult life.^[329] There are also reports that young people feel that schools wash their hands of them once they leave, with limited attention to ongoing sustained support.^[330]

Young people and researchers report that they often lack options, control and involvement with regards to their post-school destinations. A survey of disabled young people in Scotland found that while a majority were happy with the choices available to them when leaving school, 3 in 10 were neither happy nor unhappy, and 14% were unhappy in some measure.^[331]

It has also been reported that a failure to take young people's voices and aspirations into account can see them placed into college courses of limited interest or value to them, often centring on 'life-skills' rather than vocational qualifications.^[332] This gave rise to a perception from some young people that these destinations were designed to keep them busy rather than to equip them with the skills and knowledge for a flourishing life. There were even reports of individuals feeling coerced into undertaking such courses,^[333] and there was evidence that parents can play a role in this if they believe that a college environment will provide the best support for their child.^[334]

Other stressors for young people leaving school include uncertainty over their job prospects,^[335] and the administrative challenges associated with leaving school (such as exams, results and applications).^[336]

Best practice

Much of the best practice associated with leaving school reflects good practice at large, such as concerted advance planning, and the promotion of self-efficacy and self-management. Without these, the shift from full-time support and supervision to very limited support can be very challenging.

The evidence on best practice within educational settings, however, appears more limited. It should, however, be noted that for the purposes of this review, best practice regarding transitions from school into employment, and personal development and relationships are covered in different sections.

While good transition planning should take proper account of the young person's aspirations and actively involve parents and teachers, there is evidence that this does not work in practice. For example, parents and teachers may underestimate young people's abilities and post-school opportunities which can ultimately negatively impact the options available to young people.^[337] There is also a clear appetite from young people for more person-centred planning; this was the most common answer when asked what would improve post-school transitions.^[338]

Schools often take on a key role in transition planning. However, given the need for sustained support beyond school-ages, they may be better placed to feed into a transition plan rather than lead on coordination.^[339]

The evidence points to the importance of extensive and tailored education and training, targeted at a specific end-goal, in securing a successful transition for young people with additional support needs.^[340] (This, in turn, will likely require person-centred and strengths-based planning to identify these goals and needs). The importance of both vocational and general education has also been highlighted by academic reviews with regards to a range of professional, educational and other outcomes.^[341]

Young people may, however, not know what their exact end-goal is, and they have therefore emphasised the value of taster sessions, visits to colleges/universities, and work experience.^[342]

A survey of young people in Scotland found that among 14–17-year-olds, information on leaving school was a priority.^[343] ARC Scotland have also noted that information provision on post-school opportunities is not always adequate, and have called for the publication and diffusion of accessible guides to this end.^[344]

Employment

Common experiences

Disabled people's employment outcomes lag behind those of non-disabled people, both in Scotland and elsewhere. A recent Scottish Parliament consultation on transitions saw stakeholders express dissatisfaction at below-average employment rates,^[345] and young people report feeling excluded from employment and demoralised at a perceived lack of opportunities.^[346] It has also been observed that once in work, young disabled people are disproportionately likely to be working shorter hours.^[347]

Employers often demonstrate a poor understanding of disabled people's abilities, and societal and parental expectations are similarly limited.^[348] There is evidence that this is especially pronounced with regards to people with learning and developmental disabilities.^[349] This can limit the employment opportunities available to young disabled people as their capabilities are routinely underestimated. To make matters worse, this can also apply within support services, with the consequence that employment opportunities are not planned or provided for.^[350]

Low expectations contribute to young disabled people finding it difficult to enter the world of work and they are often reliant on third sector organisations to provide experience. However, such opportunities do not always ensure progression prospects.^[351] It has also been suggested that young disabled people can often find themselves stuck in a cycle of voluntary work and/or work experience.^[352]

Despite the well-documented importance of targeted and vocational training within the literature, disabled young people are under-represented in education and training,^[353] and stakeholders have observed a paucity of tailored, suitable training materials and packages.^[354]

Best practice

The importance of early planning again surfaced repeatedly with regards to young disabled people's transitions into employment, with the suggestion that it should begin from the age of 14, and that more tailored career planning should begin from 16.^[355] As part of this, personalised indicative budgets were seen as a means of clarifying and planning for available and accessible opportunities, especially given the complex service and funding landscapes.^[356] There is, however, evidence that information and support to enter work is lacking, with disabled 14-17 year olds in Scotland reporting a shortage of guidance.^[357]

There is some evidence that low parental expectations of post-school employment opportunities are limited, however, and there is further evidence that these are highly predictive of outcomes.^[358]

The importance and effectiveness of vocational training and preparation is widely noted in the existing literature, and especially so for people with learning and developmental disabilities.^[359] The Fraser of Allander Institute points to the effectiveness of tailored training programmes delivered in partnership between businesses, third sector organisations and/or educational establishments. These allow young disabled people to gain skills as well as practical experience. However, stakeholders and young people themselves have reported a shortage of such opportunities in Scotland.^[360]

For young people with complex needs, to provide sufficient support for engaging and sustaining them into paid employment, a holistic approach is necessary where multiple stakeholders work collaboratively with them, tackling issues across multiple life domains including knowledge, skills, attitudes and wellbeing. ^[361]

There is also evidence that young people can struggle with application and interview processes,^[362] and mock interviews have been deemed valuable by young people themselves.^[363] Training packages may wish to take these into account.

A range of effective possible routes into employment have been identified within the literature, including:^[364]

• Internships
• Voluntary work
• Work experience (especially with local employers)
• Supported apprenticeships and supported employment
• Blended study at college
• Self-employment

The Fraser of Allander Institute has noted that employment in the third sector can be an effective first step as the sector can "offer the empathy and flexibility to allow for young people to find their feet and build confidence in the workplace."^[365] As noted above, however, it has been noted that people can often struggle to move out of/beyond this introductory step.^[366]

A number of (meta-)reviews stress the effectiveness of supported employment and placements, which are associated with improved professional and personal outcomes.^[367] Young people themselves have validated this approach, highlighting the value of work experience.^[368]

However, a review of the landscape in Scotland suggested that routes into employment for disabled people are geographically inconsistent, and that eligibility and referral can be a question of luck.^[369]

Independent Living

Common experiences

Independent living is central to the transition to adulthood but can often be fraught with practical obstacles.^[370]

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".^[371] However, once again there is evidence that many young people struggle to access and coordinate the supports necessary to achieve independent living.^[372]

Within the literature, independent living is associated with a number of key factors including self-management as well as practical issues of housing, transport and finance.

Self-management of the young person's disability and clinical needs is seen as an important aspect of adulthood, both by researchers^[373] and young people themselves.^[374] Young disabled people closely associated self-management of their diagnosis with gaining and asserting independence.^[375] However, it has also been suggested that in the UK, training and support for self-management is routinely lacking in transitions services and planning.^[376] Some young people may also want their parents to maintain a stake in their decision-making and the support they receive,^[377] and over-protective parents may struggle to cede control.^[378]

There is evidence that housing is often an afterthought and that options for disabled young people, and especially those with learning/developmental disabilities, are limited.^[379] A large proportion of people with learning disabilities appear to live with family or in residential care.^[380] Many have typically ended up in residential care homes alongside much older people, with adverse impacts on their wellbeing and social lives, though there is evidence that housing provision for this group is improving.^[381]

Stakeholders report that among those who secure their own housing, the default is often single tenancy accommodation, depriving young people of the social experiences of communal living enjoyed by their non-disabled peers.^[382] This can compound common issues of isolation and limited support networks.

A number of common difficulties securing appropriate housing have been identified, including a limited supply of housing, a lack of clear information on housing availability and options, inadequately signposted advice (which is often of a high standard but inadequately incorporated into planning), complicated funding of housing support, and difficulties accessing and coordinating support.^[383]

Best practice

Independence and self-efficacy are seen as important both in their own right, and with regards to successful transitions in other domains, including health, education and employment.^[384] Gaining independence is widely seen as important to young people both in Scotland^[385] and internationally.^[386]

A number of (meta-)reviews suggest that independent living requires concerted planning, and the provision of life-skills training and/or community-based instruction.^[387] These features were found to be predictive of post-school outcomes relating to general quality of life as well as education and employment.^[388] Early planning was again seen as vital to "ensure that the patient has the necessary knowledge and skills for autonomous behaviour at the time of transition and after".^[389] Key features of life-skills provision and planning for these purposes identified in the literature include:^[390]

• Self-management of conditions and treatment/support
• Housing
• Transport
• Finance

It has been suggested that these issues may be especially important for young people with learning and developmental disabilities.^[391]

Self-management is closely associated with the transition to adulthood,^[392] and has evident benefits for both individuals (in terms of greater self-efficacy and independence) and for services (in terms of resourcing and cost).^[393] The 'shared management model' suggests that as children and young people mature, they should take on developmentally appropriate responsibility for self-management of their condition and clinical needs.^[394] The principle of promoting self-management is widely mentioned in the literature on best practice with regards to transitions to adulthood, though it has been suggested that it enjoys only limited attention in both research^[395] and practice.^[396]

It has also been suggested that self-management has attracted growing academic attention, but that knowledge gaps persist with regards to the outcomes and mechanisms of supported self-management that are most valued and effective, and with only limited attention paid to people with disabilities.^[397]

There is evidence that self-management should be built up gradually; young people have reported struggling to take greater control of their clinical care in tandem with managing other aspects of their transition.^[398]

Reviews of interventions aimed at supporting self-management suggested that effective programmes are characterised by a range of features including: workshop-based/face-to-face delivery by trained practitioners; the assignation of homework; and parental involvement in self-management strategies. Typically, these were delivered in multiple sessions over a longer period of time (in most cases, at least 3 months), though there was evidence that shorter intensive workshops can also be effective.^[399] There are mixed findings with regards to parental involvement in self-management, with some suggesting that over-protective parents can in fact be an impediment to self-management,^[400] and some young people may want their parents to remain involved in their support and decision-making.^[401]

These programmes were (overall) associated with improved self-management and/or improved health outcomes, though it was noted that the features and delivery of each programme varied too much to firmly identify best practice.^[402] It has been observed that, more broadly, "while self-management interventions have the potential to improve health behaviors [sic], there were relatively few rigorously designed studies identified."^[403]

With regards to housing, advanced planning is again essential. Disabled young people were seen to value proximity to family, friends and amenities, as well as a safe and secure environment, all of which should be considered in such planning.^[404] Independent living and housing may also rely on adequate at-home care/support and assistive technology, so support and guidance arranging and funding these should be provided.^[405] This will likely require highly trained and knowledgeable practitioners being involved in transition planning.^[406]

Information regarding housing was generally found to be lacking, however, though it has been suggested that high-quality advice is available but not adequately incorporated into transition planning.^[407]

Calls have been made for a package of information relating to basic housing questions to be made available early in the planning process.^[408] This may gradually give way to more practical/technical information (such as how to apply to be on the local housing register, and information about receiving welfare/housing benefits).^[409]

For young people with profound learning disabilities, it has been argued that information provision, educational preparation for families and systematic follow up are all important areas of best practice for effective transitions. ^[410]

In addition to guidance and support to find a house, best practice in preparation for independent living should also equip the young person in question with the necessary financial and housekeeping skills to maintain their home.^[411] Young people themselves have flagged an appetite for greater instruction in life-skills, such as cooking, cleaning and personal finance, including related issues around benefits.^[412]

Personal Relationships

Common experiences

It has been observed that disabled young people often have below-average outcomes with regards to personal relationships and active participation in their community.^[413] Social isolation is commonplace among disabled young people,^[414] and especially so among those with learning disabilities.^[415] Disabled young people report that they lack confidence in everyday social situations,^[416] and that they are not given opportunities to be active members of the community.^[417] While the theme/term 'active citizenship' surfaces occasionally in the literature, there is very little evidence on its practical meaning.

Young people can often lose touch with friends and peers when leaving school or child services, and some have reflected that they lack opportunities to meet other disabled young people with similar experiences.^[418]

Research with disabled young people shows that many see friendships as a key part of the transition to adulthood, but also something that is lacking from their lives, from many support services, and from much of transition planning.^[419] Young people in Scotland have reported that they see building their interpersonal skills and relationships as a central part of gaining independence through their transition to adulthood.^[420] This is especially an issue and priority for people later in their transition (aged 21-25), for whom feelings of isolation may compound other feelings of demoralisation with respect to employment.^[421]

Best practice

It has been suggested by various stakeholders that transition planning should include personal development and a focus on friendships and relationships.^[422] Holistic planning and support are seen to go beyond outcomes-based metrics relating to education and employment, "but also psychosocial development, including ability to consolidate identity, achieve independence and establish adult relationships."^[423]

However, despite longstanding calls to improve efforts to tackle social isolation,^[424] a number of researchers have suggested that limited attention has been given to personal relationships in research, practice and monitoring.^[425] Stakeholders have similarly reported that young people in Scotland routinely lack support and planning with regards to this issue.^[426] There is further evidence that this is especially true of sexual relationships, despite transitions typically occurring in tandem with sexual maturity.^[427]

Without greater attention to personal and sexual relationships, it is difficult to identify best practice and there is very limited evidence on this issue.