Navigating the path from childhood to adulthood: the dismantling of support services

Gayle Munro, formerly Head of Research & Evidence at the National Children’s Bureau, writing in a personal capacity

Woman fastening wheelchair buckle for disabled child at home

Introduction

The process of “becoming” an adult versus “being” a child represents a transition process for all young people, with an increasing body of evidence developing our understanding of puberty and the adolescent brain.¹ But for some young people, the juxtaposition between “being” and “becoming” can be brought into even sharper focus, depending on what that transition period represents.

The extent to which childhood represents a safe space is not a universal experience for all children, despite political attempts to legislate for such universality. The rights of children and young people, codified as they are by various legislative and political controls, are mainly discussed within spaces dominated by adults. The extent to which children themselves are aware of what they are entitled to by law will differ depending on the circumstances of the individual child. How old is the child, for example? Do they go to school? What type of school do they attend? Which curriculum are they following for which subjects? How politically aware/literate are they, are their friends, and the adults in their lives? Do they have access to information in a language they understand well? Do they have access to the Internet? To books? How interested are they in finding out more about their rights and entitlements as children?

For many young people, reaching the age of 18 can represent (at least the perception of) increased freedoms: an end to compulsory education and/or perhaps a move away from the parental home. Many children may look forward to this independence with a mixture of excitement and apprehension, recognising the bilateral relationship between increased independence and greater levels of responsibility. For many young people, their childhood represents a time of protected vulnerability, dependence and safety with progression into adulthood being a time to look forward to greater independence. However, for the two groups of young people discussed here, that progression to independence can bring fear and uncertainty.

In addition to the more common concerns and issues related to adolescence, this transition period can represent a ticking clock to a point in time when certain support structures, afforded to young people by virtue of their status as children, will no longer be available. The experiences of two groups of young people are discussed here: 1) young people leaving care with insecure immigration status and 2) young people with life-limiting conditions in the transition to adulthood. For these groups of young people, who may not at first glance have much in common (beyond their age), the transition to adulthood can be a clock-watching exercise both for the children themselves and for those involved in their care and support. The process of “becoming” for these young people represents the dismantling of scaffolds of support with a risk of future precarity into adulthood.

Young people leaving care with insecure immigration status

The Paul Hamlyn Foundation, as part of their Shared Ground fund, provides grants to projects supporting young people leaving care with insecure immigration status.² The young people the projects work with all present with different support needs, but the one thing they all have in common is a need to regularise their immigration status before reaching the age where they will no longer be in the care of the local authority and when an insecure immigration status is likely to render them with no recourse to public funds (NRPF). For young people subject to immigration control, the status of being deemed a child in the eyes of the authorities can mean the difference between destitution and access to the welfare state. The stakes around who is an adult and who is a child are high when it comes to establishing the right of access to services. The hostile environment and what has been described as “everyday bordering” means that so many aspects of daily life are effectively denied to anyone who is not able to evidence a regularised immigration status — from access to housing, education, employment, the welfare system, secondary healthcare, a bank account, and even a driving licence.³

Such is the importance of establishing age that so much is invested in the age determination process, despite criticisms of its clinical approach.⁴ An insecure immigration status is significantly more damaging for an adult whereby such a status effectively locks the door to so many aspects of daily life, aspects which can often be taken for granted by those who have never had to think about their immigration status. By virtue of their age, children are protected (their status as a child will “trump” their insecure immigration status in terms of accessing services), but the clock is running down to the age of 18. A secure immigration status can act as the gateway to a range of welfare and support services. However, if that gateway remains locked by virtue of an unregularised status, that security is denied and what awaits the undocumented young person can then be precarity and limbo.

Young people with life-limiting conditions

Together for Short Lives funded 10 projects over four years to test innovative approaches to supporting the transition of young people with life-limiting conditions from children’s to adult services and in navigating the pathways through various support structures.⁵

For most children and young people, the adults present in their lives, outside of the family and friends of the family, mainly play a transient role. For example, teachers often change from one school year to the next and social work staff turnover can be high.⁶ Healthcare workers, especially those in senior roles, can sometimes have significantly longer periods of engagement with families than other professionals working with families and young people. With improvements in healthcare and greater acquired knowledge around treatment of certain conditions, some children and young people are now living into adulthood who may not have previously been expected to. Young people with certain life-limiting conditions as adults may be under the care of medical professionals without a paediatric background who may be less experienced in what would previously have been considered a “childhood” condition.⁷

The move from paediatric to adult healthcare can therefore represent a significant shift in the support environment for disabled young people and their families. For young people with complex and life-limiting health conditions, and their parents/carers, the transition to adulthood can mean entering a space they may never have expected to be negotiating, leaving behind the familiarity and protection of paediatric support.

Implications for policy and practice

For both of these groups of young people, the support environment enveloping them as children or young people can help to form a safe space, a form of security that can then change dramatically as they enter adulthood. Two aspects common to both groups are: 1) the extent to which support workers and parents/carers articulate the process of navigating “the system” as a “struggle” or a “fight”, and 2) the need for long-term planning as a strategy of future-proofing against young people falling into a state of precarity and/or limbo post-18. The experiences of both groups highlight how the trajectory of “becoming” an adult can depend so much on the efforts of those supporting them to navigate the systems effectively.

A common theme in the National Children’s Bureau’s research with both groups was the extent to which both support staff and families described the “battle” or the “fight” to advocate on behalf of their young people or to gain access to the support they needed. While foregrounding young people’s voice, the complexity of support systems or, in some cases, a lack of experience of “the system” in the UK, or the extent of a young person’s cognitive vulnerability, means that an advocate in the form of a support worker or parent/carer is necessary to negotiate that battle. This has been thrown into even sharper focus by the pandemic and the impact that this had on carrying out assessments of young people. The lack of availability of usual support structures has intensified what was already (even pre-pandemic) described as a “fight” to gain access to much of the support needed by their young people. Policy makers and commissioners of services should be encouraged therefore to take action to enable services to do what they can to reduce the precarity in these young people’s lives, to extend the scaffold of support beyond the cliff-edge of childhood/adulthood and to alleviate the need for such a battle by or on behalf of young people and their families.

Staff supporting young people with insecure immigration status have described how “exit planning” is a feature of their support work right from the first keyworking session and support needs assessment.⁸ Support workers emphasise to young people the importance of working to secure immigration status right from the beginning, mindful that the clock is ticking down to the point when they will no longer be able to offer support. Careful planning is also a feature of life for families where there are young people living with disabilities. Parents who have children with chronic or life-limiting conditions describe how they are advised to start planning for the child-adult transition process from as young as 14.⁹

We can imagine the trajectory of childhood being an upwards curve reaching the top of the curve at the transition point from child to adulthood. However, with multiple references to the clock running down to the age of 18, for these two groups of young people, the curve can be seen in reverse. As the clock ticks down to the point when the young person will no longer be considered a child, this transition period becomes a time for planning. Support services which work with these groups of young people are already very aware of what needs to be done to help future proof against the risk of their young people reaching the age of 18 and either a) no longer being entitled to support, or b) moving from the security of children’s services to the less familiar world of adult support. However, two factors have significantly impacted upon the ability of services to plan for the future and to encourage planning on the part of young people and families: 1) funding cuts and 2) the pandemic and associated frequently changing guidelines.

NCB’s research with families about the impact of the pandemic on their lives has highlighted the extent to which the pandemic and associated series of lockdowns and changes in guidance has affected the ability of families — especially those who have young people with disabilities or health conditions — to plan.¹⁰ Assessments have been delayed or cancelled altogether with a knock-on effect on access to other support. And such services are often operating in precarity themselves. Funding is scarce and short-term in nature. A key tenet of such services is encouraging young people and/or their parents/carers to plan for the future, but the irony is that the precarity of young people with insecure immigration status, for example, is often mirrored in the support services who fight for their cause.

Service commissioning in support of young people and their parents/carers navigating that transition in the space of child to adult services needs to be cognisant of the gradual dismantling of the scaffold of support within the wider system and should be designed to replicate a space of safety during that transition period. A short-term, cliff-edge approach to commissioning services risks young people and their families falling over the cliff, leading to issues further along the life course, and ultimately a greater demand for (and associated costs related to) support services in the future.

[1] See for example, BJ Casey, RM Jones and TA Hare (2008) “The adolescent brain”. Ann N Y Acad Sci. 2008;1124:111–126. doi:10.1196/annals.1440.010

[2] More information about the programme is available here: https://www.phf.org.uk/funds/shared-ground-fund/

[3] N Yuval-Davis, G Wemyss & K Cassidy (2018) “Everyday Bordering, Belonging and the Reorientation of British Immigration Legislation”. Sociology. 2018;52(2):228–244. doi:10.1177/0038038517702599

[4] A Hjern, M Brendler-Lindqvist & M Norredam (2012) “Age assessment of young asylum seekers”. Acta paediatrica 101. 4–7. 10.1111/j.1651–2227.2011.02476.x.

[5] Together for Short Lives, Improving Transition for Young People fund: https://www.togetherforshortlives.org.uk/changing-lives/developing-services/transition-adult-services/awards-programme/

[6] Hansung & Madeleine Stoner (2008) “Burnout and Turnover Intention Among Social Workers: Effects of Role Stress, Job Autonomy and Social Support”, Administration in Social Work, 32:3, 5–25, DOI: 10.1080/03643100801922357

[7] DM Goodman, M Hall, A Levin, RS Watson, RG Williams, SS Shah & AD Slonim, (2011) “Adults With Chronic Health Conditions Originating in Childhood: Inpatient Experience in Children’s Hospitals”, Pediatrics 2011;128;5 DOI: 10.1542/peds.2010–2037

[8] Through interviews as part of NCB’s research into models of service provision for young people leaving care with insecure immigration status: https://www.ncb.org.uk/what-we-do/research-evidence/our-research-projects/research-models-service-provision-young-people

[9] As part of data collection for evaluation of the NCB’s expert parent programme, funded by Together for Short Lives, for parents of young people with life-limiting conditions and cognitive impairment.

[10] NCB research exploring impact of the COVID-19 pandemic on children, young people and families: https://www.ncb.org.uk/what-we-do/research-evidence/our-research-projects/research-exploring-impact-covid-19-pandemic

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Over the last 150 years, the experience of being a child in the United Kingdom has changed hugely in terms of how children are viewed, valued and cared for. During this period, policymaking and research relating to children have also undergone dramatic changes.

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