Staying on track

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Young people with SEN talk about the support they need to prepare for adult life.

Eirik was 19 when he organised a two-week polar trek with a friend. On skis and carrying tents, with no mobile signal, they navigated northern Norway in winter, catching and cooking their food as they went. Digging survival holes in the snow, gauging avalanche risk and telling safe ice from unsafe were all in a day’s work.

Six months previously, Eirik had left school having narrowly missed gaining the necessary qualifications for college entry: he had concussion following an altercation with another student, and didn’t complete exams successfully. He has Asperger’s syndrome and is reflective, intelligent, skilled, knowledgeable about the natural environment and great to talk to. But despite all these advantages he is not in a “positive destination” in the form of further education, training or employment, and is struggling to find work. With no clear pathway, he is drifting, and his family are becoming increasingly concerned for the future.

For young people with learning difficulties who are clear about what they want and have the right qualifications, identifying next steps after leaving school can be more straightforward, although their ability to complete a course or training programme may still be limited by individual support needs. But for those who find themselves with few qualifications and no plan, the years immediately after school can be like a journey without equipment, map or directions. For Eirik, trekking through the Arctic wilderness has proved easier than trying to identify opportunities and appropriate post-school support in his home town.

A European perspective

Fifty young people from Italy, Norway and the Czech Republic with Asperger’s syndrome, ADHD or Tourette’s syndrome, and/or their family members, took part in the Life on the Edge of the Cliff project to share their experiences of leaving school. Their thoughts are the basis of a new report highlighting the challenges facing this group and the impact on young people and their families.

For many, the years immediately after school can seem like the perfect storm. Navigating a new landscape with different professionals and expectations, a looser structure, and less involvement from parents and other support networks may be overwhelmingly stressful for those who already find it difficult to interpret the world around them. Adjusting to the world beyond home and school may mean having to develop new strategies to manage sensory issues or challenging behaviours. Those who did not thrive in the school system may find their academic qualifications do not match their ability or aspirations, and they may not yet have acquired life skills that come more intuitively to their neuro-typical peers.

At the same time, support services in the adult sector can be more difficult to identify and access. It isn’t easy to find the right person to take over a role played previously by teachers or learning assistants, and information held by children’s services may take a long time to be passed on. Parents are no longer expected to be involved in discussions and decisions, which may bring welcome freedoms for some but added pressure for others. If you choose not to engage with a service, no-one can make you, even if others may think it’s in your interest – but it’s easier to slip off someone’s radar if you miss an appointment or fail to reply.

A further challenge is the widespread misunderstanding of what it means to be “high functioning”. For too many services, this implies being able to manage with little or no support when in fact the opposite may be true, especially during times of pressure; the invisibility of ADHD or Asperger’s can make it difficult for others to recognise the extent of someone’s difficulties until crisis point is reached. Ongoing needs may be as great as for “lower functioning” individuals, but for support of a different kind.

A crucial time

Transition to adulthood is second only to the first few years of life in significance and impact on future outcomes, yet it receives only a fraction of the attention and finance available to early years services. Some parents even shared their belief that support services step back as the eighteenth birthday approaches, concentrating resources elsewhere because they know young people are moving on.

As a social worker in Norway put it, “In primary they have assistance all the time. In secondary it gets less and less, and disappears. And when you should manage by yourself you have no-one to lean on. Maybe they don’t need all those assistants when they are seven. Maybe they should put them in at the end of the education system instead.”

Schools are under pressure to record “positive destinations” for leavers, but usually these aren’t destinations at all: they are staging posts on a journey that should take someone in a direction they want to go. Figures further down the line are a more accurate assessment of how positive they really are, and these are damning: only 15 per cent of people with autism are in full time paid employment in the UK and over 90 per cent of people with ADHD say they have difficulty finding and keeping a job. The picture is similar across Europe. Most of the people who took part in this study had experienced a series of unsatisfactory placements without appropriate support and with no career path, while only a handful of those who had graduated from college or university were in paid employment.

But young people who don’t progress directly into employment or education are also still on a journey: social difficulties rather than academic ability or potential are often the biggest barrier for those who are not as ready to leave school as their neuro-typical peers. Getting support that maintains motivation, aspiration and social integration at this stage can make the difference between being prepared for future opportunities and becoming demotivated and disengaged.

Unfortunately, support of any kind for this group is thin on the ground. As one parent expressed it, “I feel the only person who sees how vulnerable my son is at this moment of transition is me. I see if we don’t get it right now we might never… this is his life that is at stake. That scares me.”

Developing life skills

Clear pathways and robust support structures are a must; planning has to start at least two years before leaving school and continue beyond it, and should focus on life skills and social development as well as academic qualifications. Wrong decisions at this stage can be difficult and costly to undo, so it makes sense to factor in enough time to get it right in the first place.

The impact of an individual’s condition on their everyday functioning is important; it can be the main cause of many barriers, and unless a plan includes strategies to overcome these or reduce their impact, the most academically able young person risks being set up to fail. Young people in the project called for the focus to be less on pressure to get into work and more on coping with everyday life, suggesting this was a better use of resources as work placements were more likely to be successful if these skills were in place.

Specialist careers advice, including life coaching and counselling, was felt to be a significant gap in provision, along with the lack of a role within adult services to manage a transition plan once someone has left school. This is particularly important for those not going into employment or education immediately, as without someone to coordinate activities and implement a plan, they are less likely to seek out new opportunities and challenges.

In addition, people shared the view that psychoeducation and other therapeutic interventions should be more widely available; the majority of young people had experienced mental health issues that impacted on daily life, but found it difficult to get professionals to recognise the need for early intervention to prevent this becoming a barrier to engaging with services. They felt more training in talking therapies would be beneficial for support workers.

Issues and priorities

Other comments from young people and parents highlighted a number of common problems, including:

  • too much of a focus on theory and not enough on making a practical difference
  • a failure to think, plan and fund long-term
  • a lack of understanding and specialist knowledge among service providers
  • too little collaboration across service boundaries
  • a widening services gap, with existing services not meeting the need
  • service managers who are out of touch with daily lived experiences.

Improving communication and addressing gaps in planning, preparation and coordination were identified as priorities, with a need for a wider range of post-school options that can combat social isolation, build transferable skills, and signpost to other services.

One example of a positive alternative next step can be found in Norway, where “folk high schools” help bridge this gap. These independent, not-for-profit colleges are part of the higher education system and open to all. Many specialise in outdoor activities, others in theatre, music, technology, water sports, and opportunities including work experience and trips abroad. There are no entry requirements and no formal teaching programme; with no leaving qualifications in the balance, the pressure is off and many relish the chance to develop practical skills and abilities. For students with additional support needs they are an opportunity to be part of a learning community that focuses on what you can do, not what you can’t. They are also residential – a small, informal but structured environment that creates the perfect setting for learning essential life skills, social responsibility, and respect and value for others.

Settings like these can be invaluable in building confidence, acquiring self-knowledge, and learning to be part of a team – all essential skills for the world of work.

Time to act

Decision makers and support agencies across Europe are facing a tough question: how can public services and social care agencies square the circle of shrinking budgets and increasing demand? Part of the answer has to be reducing long-term support needs among people who can live more independently. So the time is right for governments, local authorities and services to tackle the barriers preventing able young people from achieving their potential, integrating into their communities, and contributing socially and economically.

All the evidence indicates that many able young people with learning difficulties will not find their way into employment appropriate to their abilities without support. Improving experiences at this stage – while the brain is still developing, behaviours are changing and momentum from school remains – can be the key to ensuring they have the same chances as their peers to achieve personal independence, find work and integrate into their communities. Fail now, and doors begin to close that may never reopen.

Further information

Tracey Francis is an independent writer and researcher. She received a Travel Fellowship from the Winston Churchill Memorial Trust to research post-school experiences of young people with Asperger’s syndrome, ADHD and/or Tourette’s syndrome in Italy, Norway and the Czech Republic. Her report, Life on the Edge of the Cliff, and further information about the project, is available at:
www.lifeontheedgeofthecliff.com

Names have been changed.

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