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Spinal injury and inclusion
FEATURE / 39 ➜ SPOTLIGHT
CONFIDENCE AND Support INCLUSION: after spinal injury J U L I E W H A RT O N Julie is the course leader BIO for the National Award for Special Educational Needs A spinal cord injury can be lifechanging, but it should Coordination (NASENCo) at the University of not be a barrier to learning, friendships or confidence. Winchester. Julie’s Julie Wharton examines the support available for research inclusion interests are in and diversity. schools and settings, and the young people they support.
hirty-five years ago, T Mike Nemesvary, a world champion skier with many television and film appearances as a stunt double, broke his neck during a routine trampolining training session. A year prior to his accident, Mike appeared in the opening credits of the James Bond film ‘A View to a Kill’ . But after his accident, having sustained a life-changing spinal cord injury, Mike was paralysed from the neck down and unable to walk. Undeterred, and with the support of his friends, Mike returned to the ski slopes and learnt to sit-ski. Mike believed that others in his situation should be given the same opportunityt and, with the help of friends from the film and skiing industry, Back Up was established.
Over time, Back Up grew into an organisation which supports individuals and their families of all ages to rebuild their confidence and independence following a spinal cord injury. I first came to hear of Back Up when I talked with Julie Hill. Julie and I grew up as next-door-but-one neighbours. In 1990, not far from the village where we grew up, Julie sustained a spinal cord injury as the result of a car accident. Julie ’ s story is captured in the book Footprints in the Snow and the television film of the same name in which Caroline Quentin played Julie. Julie had sustained a spinal cord injury at the ninth thoracic (T9) vertebra.
The spinal cord consists of nerves and is a long tube-like structure that runs from the brain stem almost to the bottom of the spine. A spinal cord injury might be damage to the cord, or the tissue and bones surrounding the cord. Where the injury occurs will have an impact on how much movement and sensation is lost. Back Up is there for anyone who has been affected by spinal cord injury. All services are delivered by people affected by spinal cord injury themselves, so they can help people adjust positively to spinal cord injury and get the most out of life. Back Up is the only UK charity with dedicated services for children and young people with a spinal cord injury.
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The spinal cord injury at the ninth thoracic (T9) vertebra that Julie sustained
I asked Julie about her role as a volunteer with Back Up. Julie has been involved as an education advocate, a mentor to others with a spinal cord injury and is a wheelchair skills trainer. When a child or young person sustains a spinal cord injury, Back Up is there to provide support to them and their families. Julie regularly volunteers at the Under 13s course for children with spinal cord injury. This summer, she volunteered on their course in Exmoor. As part of this course, children have the opportunityt , along with a parent and a sibling, to take part in a range of activities such as horse riding, swimming, canoeing, abseiling, hand cycling and zip-lining.
During these weeks in either Exmoor or the Lake District, children are also taught wheelchair skills to help increase their independence. In this safe and supportive environment, children can meet other young people with spinal cord injuries and learn from each other while having fun and gaining confidence. Julie explained that a very common concern for children and young people is what life might be like on the return to school. Back Up’s education inclusion service helps ease these concerns for children and their parents. The charity supports them to settle back into education and to participate at all levels, ensuring their voices are heard.
Back Up aims to ensure that children and their families feel prepared and confident, and also advise education providers from nurseries and schools, to college and universityt . Back Up liaise daily with schools and SENCOs across the UK on how to include young people with a spinal cord injury in all aspects of school life, including lessons and activities, ensuring that no child or young person ever feels left out.
The education inclusion service, led by Jo Teager, is supported by a team of dedicated volunteer education advocates, all of whom have a spinal cord injury, like Julie. In this role Julie works with Jo to advocate at meetings with the young person, family and school and to provide support, advice and reassurance. Jo recently provided intensive support for 15 year-old Lillie after she sustained a spinal cord injury in a car accident. Lillie faced many barriers to accessing her education but Back Up worked with Lillie, her parents and her school
If your school would like to find out more, you can contact Back Up directly for an informal chat or you can access the education inclusion toolkit for free on their website, www.backuptrust.org.uk
to facilitate a positive and smooth transition back. Julie joined meetings and was able to provide vital peer support for Lillie.
Lillie was worried about fitting back in at school now she is a wheelchair user. She explained: “Back Up has helped me get back into school and access the school in ways that I could have before. Being in school now, it’ s made me feel more confident and less worried, as school knows how to help me in and out of my wheelchair with exercises. ”
Julie and other education advocates go into schools to provide free training for staff and students alike. Julie may present at school assemblies where she ’ll talk to students of all ages about how they might best offer support to a classmate with a spinal cord injury. “The most important thing is to listen to the voice of the child, ” Julie explained. For example, when sharing the story of a young person with a spinal cord injury, it will be personalised as to what the child would want included and shared with others. Some children don ’t want others to touch their wheelchair and want to be as independent as possible. Education advocates can bring very specialist knowledge of what will provide the best possible educational opportunities for children and young people with spinal cord injuries.
Alongside Jo, I met Back Up’s Under 18s Services Manager, Ella Provan. Listening to the voices of children and young people who have had spinal cord injuries is vital to ensure they feel welcomed back and included in the life of their school.
Ella explained that Back Up also offers mentoring for young people with a spinal cord injury. Each person is matched with a mentor of a similar age, who has a spinal cord injury, to enable them to share experiences and talk to someone who has been in a similar situation.
Back Up is now re-launching its online toolkit to help ensure that students with a spinal cord injury are fully included in every aspect of their school lives. This free resource can be accessed online and used by schools and SENCOs. It provides comprehensive advice and practical tips from professionals, young people and family members to build confidence for students to get the most from their education after a spinal cord injury. This person-centred toolkit will help ensure that children and young people have full and successful s lives in their educational setting. The materials provide support and guidance on a range of topics from inclusive PE, guidance for school trips, and adaptations. Back Up is also able to help with the practicalities of the statutory assessment process and matters associated with a child or young person ’ s Education Health and Care Plan.
Listening to the voices of children and young people who have had spinal cord injuries is vital to ensure they feel welcomed back and included in the life of their school. As Lillie states: “Thank to Back Up Education, I feel like I’ m part of the school again ... that they are OK with me being in school with friends who can help me throughout. ”
