Features

Growing pains

Hannah Warwick looks at supporting disabled young people through the transition from children’s to
adult services.

In 2011, I led a study tour of special educators to the original Project SEARCH site at Cincinnati Children’s Hospital in the US. Project SEARCH is a year-long supported internship programme for students who are disabled or have special educational needs. It was one of the first examples I had seen of effective transition planning and support for disabled young people. It was exciting for me and, crucially, for the group of teachers from the UK preparing their students for a life beyond school. It helped them realise that things could be done differently – and effectively.

My experience as a social worker in a deprived London borough had magnified for me many of the barriers that children and young people face in preparing for and progressing to adulthood. I am now involved in developing and delivering support to professionals on transition through the Council for Disabled Children’s (CDC) Transition Information Network. This specialist network leads on policy issues, responds to government consultations and works with leading organisations to develop and promote good practice in transition.

 

The transition experience

Transition describes the period of time when a disabled young person is preparing to move from children’s services to adult services and, more broadly speaking, from childhood to adulthood. Transition is a long-term process that covers the period before, during and after the time when a young person moves from children’s to adult services. Good transition is linked to our ideas about what a good adulthood means: choice, training and education opportunities, living independently, and having positive friendships and relationships. But getting it right is not always a simple process.

For non-disabled young people, transition to adulthood can be a daunting prospect, but it also connotes freedom from parents, as well as new and exciting experiences and opportunities. In
contrast, many disabled young people and their families refer to the fear of ‘falling off the cliff’.

For Lucy Watts MBE, a young woman with Ehlers-Danlos syndrome, moving from a paediatric ward to an adult ward was a bewildering experience. Her new co-patients were elderly dementia patients, and she found that she was now expected to make decisions alone, having previously been supported by her mother (Together for Short Lives, 2015). 

Lucy isn’t alone: transitioning to adult healthcare can be a very anxious time. Research from the STEPP project (a national study on healthcare transitions for young adults with significant and potentially life-limiting conditions) shows that many young people experienced social anxieties about meeting the adult team and fears over the quality of their care altering (Transition Partnership, 2013).


Moving on up: the path to adult services

  • Working in partnership with young people and their families, start planning for the transition from year nine (age 13 or 14) at the latest. 
  • Help the young person choose one practitioner (a named worker) from those who support them to take on a coordinating role. The worker should act as a link to other professionals and provide advice and information. 
  • Review and update these plans at least annually. This meeting should include the young person, their family and all those who support them. 
  • The named worker should consider each of the following outcomes when helping the
    young person to plan and set goals:

-- Education and employment
-- Health and wellbeing, including emotional health
-- Community inclusion
-- Independent living and housing options.

(Source: NICE, 2016)


 

Practice recommendations

Policy changes over recent years have created opportunities to look at new ways of working to support young people as they transition to adulthood. New legal duties in the Children and Families Act 2014 and the Care Act 2014 overlap for young people moving into adulthood during the ages of 18 to 25. Some of the requirements in the legislation endeavour to overcome the ‘cliff edge’ or ‘black hole’ that families refer to (Broach et al, 2015). In particular, education, health and care (EHC) plans can continue up to the age of 25, and transition assessments as part of the Care Act are intended to reduce the number of young people experiencing a gap in provision while they await the outcome of adult needs assessments. Through EHC plans, there is also now a legal imperative to focus on preparing for transition when a child is 14, which ties in to the year nine review.

Despite efforts to embed transition planning in legislation, for too many young people and their families, the information available is patchy, with parents finding that the best source of information comes from other parents (Care Quality Commission, 2014). Information about, and communication with, relevant services and professionals is critical. 

The NICE (2016) transition guidelines aim to help young people and their carers have a better experience of transition by improving the way it is planned and carried out. At a strategic level, NICE is clear that collaboration is key to successful service delivery. At an individual level, it recognises that transition planning should be person-centred. 

For practitioners, this might mean being the single named worker for a young person. NICE advocates this practice, where one professional takes responsibility for coordinating services and for supporting
a young person in navigating them. 

But transition isn’t a single professional’s responsibility. All practitioners and professionals working with young people in transition up to the age of 25 need to understand the principles of person-centred care, the young person’s development and communication needs, the legal context, and how to involve families in a supportive, professional way. A culture change is needed so all professionals ‘think transition’ at each stage of the process and form a genuine part of person-centred planning.

To achieve this, practitioners should be ambitious about outcomes for young people. These will be different for all young people, but the motivation of professionals to support young people in their transitions to adult services and, ultimately, to adulthood should not be.

  • Hannah Warwick is principal officer for social care at the Council for Disabled Children. She discussed the key issues for transition based on the latest legislation, research and guidance at the CPHVA conference, drawing on CDC’s experience and sharing key action points for practitioners.

 

References

Broach S, Clements L, Read J. (2016) Disabled children: a legal handbook. See: councilfordisabledchildren.org.uk/help-resources/resources/disabled-children-legal-handbook-2nd-edition (accessed 12 October 2017).

Care Quality Commission. (2014) From the pond into the sea: children’s transition to adult health services. See: cqc.org.uk/sites/default/files/CQC_Transition%20Report.pdf (accessed 12 October 2017).

Fraser LK, Miller M, Aldridge J, McKinney PA, Parslow RC. (2013) Prevalence of life-limiting and life-threatening conditions in young adults in England 2000-2010: final report for Together With Short Lives. See: togetherforshortlives.org.uk/assets/0000/6736/TFSLAdultReport2013Final.pdf (accessed 17 October 2017).

NICE. (2016) Transition from children’s to adults’ services for young people using health or social care services. See: nice.org.uk/guidance/ng43 (accessed 17 October 2017).

Together for Short Lives. (2015) Stepping up: a guide to enabling a good transition to adulthood for young people with life-limiting and life-threatening conditions. See: togetherforshortlives.org.uk/assets/0001/0439/TfSL_Stepping_Up_-_Transition_Care_Pathway_6.pdf (accessed 12 October 2017).

Transition Partnership. (2013) Making a difference for young adult patients: research briefing. See: hospiceuk.org/docs/default-source/What-We-Offer/Care-Support-Programmes/making-a-difference-for-young-adult-patients-research-briefing.pdf?sfvrsn=0 (accessed 12 October 2017).

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