Creating equal access for a child with spinal cord injury

Students with spinal cord injury may need wide ranging support to access education covering all areas; academic, social, extracurricular, career planning and more.

A child or young person with spinal cord injury has the right to mainstream education and should be fully included and thriving alongside their peers.  Education establishments from nurseries and schools to colleges and universities have a duty to recognise this and offer a wide range of support.

Inclusive education case study

This section is a case study from a SENCO working with a high level tetraplegic student attending secondary school. The case study talks about the importance of involving the student, using technology, encouraging social contact, it covers their policies, how the teaching assistant’s work, and how to make inclusion happen.

Our student has full access to academic and pastoral mentors to discuss issues to do with her learning and plans for the future.  We have felt it is important she has the opportunity to express her views and explore the different options available to her.  As in the case of any student, making decisions independently and encountering different people in a variety of contexts builds confidence to deal with matters yourself.  We see this as an important life skill when entering the work place or going to university.

Involving the student:

Following our student’s trauma, she was surrounded by a lot of professionals involved in her rehabilitation and the process of integrating back into home and school life.  The presence of so many people is to help but it can also be overwhelming.  Suddenly an awful lot of people to deal with.  At school we were aware that this can all be ‘a bit much’.  We felt it was important to encourage our student to make her own decisions and express her views but only when she specifically wished.

Technology:

We encourage our student to use other learning styles and assistive technology like voice recognition software so she can be more independent. But for this student, the stage she is at is the one she is happiest with. We don’t want to push her too hard but we do want to make her aware of what is out there. So that when she goes to university and then goes into the world of work, she’ll be able to use these things to get through her day-to-day job.

Social/friendship:

Our student has close friends and we endeavour to encourage as much social contact as possible during school hours, without the presence of an adult (teaching assistant).  We try not to engineer situations because that’s a very crass way of dealing with the matter.  It’s important to let the young person decide what they are comfortable with in terms of friendships.  They still have their ups and downs and you have to allow them to deal with them how they wish.

Policies:

We review our policies with regard to Health, Safety, Accessibility and Special Educational Needs provision regularly.  At the time that our student returned to school after her rehabilitation, many physical adaptations were made and we work in an anticipatory capacity to ensure she has full access to the buildings and curriculum.  We also have medical and evacuation plans.  We meet every term to discuss these matters and an update of our student’s needs is always on the agenda – but we do take a wider view of accessibility for all.  It is useful to review regularly because the student’s needs constantly change.  Staff and pupils found it extremely useful to receive training in the needs of a student with a spinal cord injury from Back Up.  It raised awareness, increased knowledge and made integration back into school life much easier.

Teaching Assistants:

The partnership between a student and their teaching assistant is inevitably, a close one. It’s important both parties have someone to mentor the relationship.  As SENCO I have responsibility to ensure the needs of the student and TA are met and to ensure the relationship works smoothly.  Out student and her TA make a great team – but both sides need someone available to ‘offload’ to when necessary.

The TA of a student with a spinal cord injury needs to be very flexible and understand they will be learning alongside their student.  The role is diverse and includes the pastoral and academic. This might include helping the student drink and eat, transporting the student from lesson-to-lesson; helping her plan study time and acting as a link between subject teachers, academic and pastoral mentors – and of course home.  The TA sees the most of the student and takes her welfare and wellbeing seriously.  The TA is often the first to notice things which ensure we offer the right level of support and care at the right times.

Encouraging advocacy:

Everyone handles different situations in their own way but we’ve encouraged our student to be forthright with friends and those around her.  It’s OK to speak up if you feel you are being left out or side-lined.

On supporting inclusion:

Inclusive practices should already be part of the approaches to teaching and learning in a school.  On a practical level, issue each department with a personal learning profile of the student detailing their revised, learning needs. The departments should think about how they will address the student’s needs – how will they adapt teaching strategies and activities. It’s down to the teachers to think of how to make their subjects fully accessible and provide learning opportunities in the student’s preferred learning style.  Flexibility may be required with timetabling.  For example, our student requires a slightly later start to the school day now.  Her timetable has been created with that in mind.  The teaching rooms she uses are equipped with technology to make recording and participating in the lessons easier.

Involving children and young people

As professionals with responsibility for the student’s additional educational needs and welfare, we are very conscious of compliance.  We’ve learned that there are great ideas and services to assist a young person with spinal cord injury– but it’s essential that it’s what the student wants. Just because it’s available, doesn’t mean that it is appropriate.  Occasionally you have to be proactive with your student and negotiate, so it is understood what is in their best interests.  However, they will do what they are comfortable with.  You can’t force the pace of change. They’ve already had so much to adapt to if they’ve experienced a trauma. You’ve got to let them take on new initiatives within a sensible timeframe and at their own pace.  The worst assumption is that you have all the answers and know what’s best.

On making inclusion happen:

Inclusion is the duty of the school’s leadership and it shouldn’t be a new educational initiative in any establishment.  However, bringing all the services available together is not always easy, especially as time goes on.  Even with ‘establish protocols’ and schedules, it may still require one agent to bring all the relevant parties together and ensure that agreed actions happen.  We are grateful to our student’s father for being so instrumental  in achieving this at the beginning of the process.  However, some families may not have the confidence and knowledge of where to go to and who to speak to for assistance.  A head teacher or SENCO may be the ones who can advise in this way.

Inclusion within an educational setting and by involving other services is possible. You have to be determined and assertive at times. If that is what the student wants, it’s entirely their right to have.

 

Types of support

A child or young person returning to school after a spinal cord injury will require a personalised, varied plan of support.  However, this mix of support need not necessarily be expensive or create significant additional work.

“Inclusivity isn’t necessarily something that is very complex. [Schools] actually have a lot of the skills and the ability and the resources to be able to include people, just by good differentiation and mixed-ability teaching. They don’t need to over-complicate inclusivity. If you have a good school or a good teacher, they are used to differentiating or adapting what they are doing for children.”

Dr. Phil Vickerman, Professor of Inclusive Education and Learning, Liverpool John Moores University

What is more important is that the right support options are identified and provided by the school in consultation with the child, their family and other professionals who may be providing support.

The support a child or young person with a spinal cord injury requires when returning to school is not formulaic.  Each child or young person’s situation is obviously different and the support they need is too.  Any necessary adjustments are determined by the child’s medical requirements, academic situation, age, background, emotional and psychological situation and social circles.  Understanding what support is necessary entails coordinated communication among all the professionals and adults around the child – but, most importantly, it requires asking and listening to what the child or young person feels they need and want.

“The teachers asked me what I wanted. Every week they would ask me how I was doing, is there anything else they could do for me, were the times okay for me to come into lessons, and told me to let them know when I wanted to start increasing the times I was in school. The decisions were in my hands and that helped a lot. I controlled the process. There was a level of trust there. If the school had no idea what I was going through and they weren’t supporting me in the right way I would have definitely have wanted meetings with everyone to tell them ‘this is what’s needed’ or ‘this is what you can’t do’ . But because I trusted them I didn’t need to do this.” Ben, 17

One of the first steps of including a child or young person with a spinal cord injury into schools should be developing a support plan.  This means knowing what a young person may require in order to feel included in all elements of their educational experience.  When a child with a spinal cord injury is due to be discharged from hospital and return to school, designated hospital staff at the spinal injury centre will contact the school and likely organise a visit to discuss the child’s physical and medical requirements.

In addition to this, schools will need to consider what educational provision will need to be made for the student and look at applying for an Education Health Care Plan or EHCP for short.  Not all children or young people with spinal cord injuries will apply for an EHCP, but if they do, an assessment and the creation of a support plan will need to take place and review meetings will be organised.

Even if a child or young person does not have an ECHP, organising a meeting with the child, family and relevant professionals to discuss the requirements of a return to school is a vital early step.  These plans should be developed alongside the child or young person and their family and regularly reviewed and modified as needed.

A support plan should consider the elements below.

Whole school

Developing a whole-school approach to inclusion requires a commitment to its principles across the school community.  An inclusive school culture sets the tone that all members will respect each other and expect to be treated fairly and equally.

In developing a whole-school approach towards inclusion:

1.    Involve positive role models from diverse backgrounds that reflect the diversity of the school.  These can be inspiring reminders that difficult situations do not necessarily predict poor outcomes and that those in different circumstances (like using a wheelchair) still have ordinary needs, aspirations and expectations.

2.    Create a school-wide inclusion policy through the participation of all school members. Ensure other school policies, procedures and practices are inclusive and participatory where possible.  See section 2f for further information.(Training on writing inclusion policies is provided by organisations such as Inclusive solutions )

3.    Organise regular inclusion training and development for all staff, not just teaching staff.  The entire community – including students, management, cleaning and kitchen staff, teachers, families – should be involved in defining and developing an inclusive school culture.

Peer and social support

Peer and social connections are absolutely central to all children and young people’s experiences at school.  That does not change when one experiences a spinal cord injury – in fact, the importance may even increase.  It is therefore as valuable for schools to recognise social development as it is for them to support educational outcomes.

My family and friends were my rock, if it wasn’t for them I wouldn’t be here now. They kept me going, they would never let me slip behind, and they would always check how I was. As time went on they got used to it and they got used to my different types of needs.  Ben Cook, 17

“Our student has close friends and we endeavour to encourage as much social contact as possible during school hours, without the presence of an adult (teaching assistant). We try not to engineer situations because that’s a very crass way of dealing with the matter. It’s important to let the young person decide what they are comfortable with in terms of friendships. They still have their ups and downs and you have to allow them to deal with them how they wish.”

SENCo, Gloucestershire

1.    If the child or young person likes the idea, consider using a buddy system that pairs them with a trusted friend who knows what their requirements are and can help them readjust to school life.

2.    Develop an inclusive school culture by tackling bullying, providing positive role models related to disability, including Disability Equality issues and training in the curriculum and disallowing any discrimination or hurtful comments.

3.    Use school policies and practices to ensure the child or young person can be fully included in all social events, school trips, and day-to-day break times like breaktimes and lunch.

4.    Recognise that 1:1 support or physical therapy may be useful and important for the child or young person but may also impact on their participation in social times during the day and their feelings of isolation from their peers if it happens during the school day.

Develop peer support or peer counselling programmes as part of an anti-bullying or wider inclusive strategy

Classroom support and pastoral support

When a child or young person returns to school after a spinal cord injury, many educational adjustments may need to be made.  Support in the classroom should be well coordinated with pastoral support so that the student has sufficient assistance to re-adjust academically, as well as socially and emotionally.  It is also important that the student has access to the regular structure of support rather than a wholly separate one, so they do not feel singled out or excluded from the experiences their peers have.

“One of the great improvements has been getting the staff to understand that they will need to change their teaching methods and strategies – to change teaching styles. For example, our student has had to become an auditory learner – she has a scribe but she has to take everything in aurally, she needs to make sense of it all very quickly. We have adapted to our student.”

SENCo, Gloucestershire

Our student has full access to academic and pastoral mentors to discuss issues to do with her learning and plans for the future. We have felt it is important she has the opportunity to express her views and explore the different options available to her. As in the case of any student, making decisions independently and encountering different people in a variety of contexts builds confidence to deal with matters yourself. We see this as an important life skill when entering the work place or going to university.

SENCo, Gloucestershire

1.    Work closely with the health team at the spinal injury centre and the child or young person to understand any new physical requirements they may have in order to be included and participate in lessons.  This may include how they receive and record information, write, use their senses, and move around the classroom.

2.    Discuss what types of equipment or assistive technology would benefit the child or young person in the classroom.  The occupational therapist at the spinal injury centre and charities specialising in this information (such as Aspire or Ability Net) can be helpful resources.

3.    Be aware that teachers may need support in helping adapt activities and may also find working with a child or young person with a spinal cord injury to be an emotional experience.

4.   Teachers should be trained in the medical and physical requirements of students and should also be aware of the emotional and social issues related to experiencing spinal cord injury.  Speak to the spinal cord injury centre to discuss where to obtain required training.

5.   Teachers should also recognise that a child or young person’s confidence with learning and their educational future may have been affected by their injury, particularly for young people in secondary school who are considering what they will pursue after school.  Some young people with a spinal cord injury will need to adjust their perceptions and ideas of what they wanted to do in life and will need encouragement and optimism within the classroom to get through these adjustments.

6.   Teachers should also be aware of their own perceptions of what is possible for a child or young person with a spinal cord injury to achieve. Teachers should be supported to challenge their own perceptions of disability; this can be done through a number of methods for example: effective disability awareness training, organising presentations by people who have a spinal cord injury, linking with other teachers and professionals.

“As professionals with responsibility for the student’s additional educational needs and welfare, we are very conscious of compliancy. We’ve learned that there are great ideas and services to assist a young person with a spinal cord injury – but it’s essential that it’s what the student wants. Just because it’s available, doesn’t mean that it is appropriate. Occasionally you have to be proactive with your student and negotiate, so it is understood what is in their best interests. However, they will do what they are comfortable with. You can’t force the pace of change. They’ve already had so much to adapt to if they’ve experienced a trauma. You’ve got to let them take on new initiatives within a sensible timeframe and at their own pace. The worst assumption is that you have all the answers and know what’s best.”

SENCo, Gloucestershire

Specialist support

Some students with spinal cord injuries may need or use specialist support. This could include support from medical teams, such as physiotherapists. Some schools develop spaces within their premises for physiotherapy or other specialist support.

·         Work with the child or young person and family to determine the best way to support the need for specialist services.

·         Specialist care like physiotherapy is often scheduled during social times so that the student does not miss classes.  Recognise the importance of hanging out with friends and classmates and work with the student to find a mutually agreeable time that minimises impact on classes and social time.

Flexible schooling

Students with SCI may be unwell more often or need to spend significant time with medical and health teams, so home schooling or more flexible learning schedules may need to be an option.

Government guidance can be found here Illness and your child’s education

A pupil is entitled to a home tutor after 15 days’ absence from school. They can expect to receive a minimum of 5 hours tuition per week but in some areas or circumstances, it could be more than 5 hours.

Flexible schooling may also be required upon the child’s initial return to school.  Organise a schedule that suits both their physical and emotional readiness to come back to school, which may mean they only attend partial days or use a less crowded room for lessons until they are comfortable being around people again.

“I found it really hard even getting in the car let alone going into the school itself. But the school was really supportive. They never forced me to do anything; they let me take it at my own pace. Instead of chucking me straight into lessons surrounded by people, they let me stay in a room where I felt comfortable with students coming in and out, until I was used to being around people again before I went back into my lessons.”

Ben Cook, 17

Review meetings

Meetings held to review the progress and support plan for a child or young person with an SCI will be known by different names.  But hosting such meetings is an important element of any inclusion process.  They help maintain connections between staff and students, check in with the students to see how they are feeling as they readjust to school life, and determine what additional changes can be made to improve their situation.

Things to keep in mind when planning and hosting review meetings:

1.    Children and young people should always be involved in review meetings where decisions are made.  Family members should ideally be involved as well.  Sometimes it may be more appropriate for professionals to meet on their own to coordinate services or better understand each other’s role, but any significant decisions or support plan reviews should involve children or young people and their families in a meaningful way.

1.    Other professionals outside the school could also attend, including health teams, mental health professionals, social workers or community organisations where involved.  Ask the child or young person or their family who else they would like to include.

2.    It may be useful to have an advocate working alongside the child or young person.  Review meetings can feel very professional and adult-focused, and younger people or families can find this intimidating. Having a school staff member or peer support the child or young person before and during review meetings can help ensure they are comfortable to participate and their opinions are expressed and receive a response.

3.    Review meetings can be short and regular occurrences, to check on certain aspects of the child’s educational experience.  Organise them with the child or young person to determine what level of support they feel they need.

4.    Bring a positive, encouraging message to the meetings that assures the student that the changes and adjustments being made are important and valuable to the whole school community, rather than an additional work load or too expensive.

Resources to link to or include:

Inclusive solutions – offers training on writing inclusion policies

Blueprint guide ‘Going Back to School: Supporting Young People Returning to School with Spinal Cord Injury: A Guide for Schools’

ALLFIE (Alliance for Inclusive Education) Inclusive Education Guide for Professionals

Knight, A, Petrie, P, Potts, P and Zuurmond, M. (2008) The school lives of children and young people with a spinal cord injury. Thomas Coram Research Unit, Institute of Education, University of London. Report for Back Up.

Using assistants

The use of additional staff to support students both academically and physically is common with children and young people with a spinal cord injury.  Called Teaching Assistants, Personal Assistants or Learning Support Assistants (in the toolkit we will refer to them as TA’s), these staff can offer invaluable support and assistance for students who are regaining their confidence.

“The school assigned me my own PA which was very helpful. There was a lot of pressure on me with the incident and with my GCSE’s coming up, it was nice to have some of it taken off my shoulders. The assistant would come into my lesson and remind me what I have next so that I wouldn’t be late.” Dean, 15

However, it is vital that TA’s are trained and aware of the importance of maintaining professional boundaries and supporting students’ need to be independent and social – sometimes without the presence of the TA.  Full and proper training at the outset is crucial as the young person may not have the skills or confidence to direct and instruct the TA as an adult would.  TA’s must also recognise the importance of students’ autonomy for learning and in the classroom.

“The TA of a spinally injured student needs to be very flexible and understand they will be learning alongside their student. The role is diverse and includes the pastoral and academic. This might include helping the student drink and eat, transporting the student from lesson-to-lesson; helping her plan study time and acting as a link between subject teachers, academic and pastoral mentors – and of course home. The TA sees the most of the student and takes her welfare and wellbeing seriously. The TA is often the first to notice things which ensure we offer the right level of support and care at the right times. ” SENCo, Gloucestershire

In an Institute of Education report on the school lives of children and young people with spinal cord injuries (Knight et al, 2008), one student reported feeling smothered by overbearing TA’s:

” Science has caused me a few problems.  In terms of practical, I need TA’s with me [for health and safety reasons] which I’ve not been comfortable with – you want your freedom. The TAs ask me ‘is there anything you need? Are you OK?  And I wanted to shout at them, ‘I’m not mentally disabled you know, I’m physically disabled.  If I want anything, I’ll tell you!”  Ali, 15

Others worked with TA’s who were patronising, mollycoddled them or overstepped professional boundaries:

“Some try to become your friends with you which isn’t what I want, especially when they’re 60 or whatever!”  Ian, 16

TA’s should also be fully informed about the particular requirements of the student, and the child or young person should determine how that information is relayed.  It can be particularly helpful to have the TA involved in the development of the student’s Education Health Care Plan (EHCP) so they are clear about the aims and strategies of their work and the goals of the student if they are helping them in the classroom.

Here are some strategies to consider when working with TA’s:

1.    A good working relationship between the TA and the student is crucial. Hold regular review meetings and ensure there is another trusted adult the child or young person can talk to if they are not happy with the support they are receiving from the TA.

2.    Academically, students need ownership over their own learning processes, so think about how to put choice, control and ownership back in the student’s hand rather than in the TA’s.

3.    Work with the student and teachers to best understand what support would be most useful and appropriate for the student and then decide how to use the support budget available to best meet those needs.

4.    It is sometimes better for TA’s to work with their pupil as part of a small group as this helps the pupil to feel less isolated and to see that all pupils have individual strengths and weaknesses. It can also make working more fun, as it can be too intensive for pupils to be working 1:1 with an adult for much of the day.

5.    Consider ways the TA can fulfil their role without being intrusive.  For example, if their main role is for health and safety in an emergency, they may be able to be on the same floor as the student but not hovering over them in the same room.

6.    All TA’s should be appropriately trained (e.g. medical training in relation to spinal cord injuries, supporting use of equipment like a walking frame, manual handling where required) before starting work.  However, the TA role is complex and involves more than just the practical tasks.  Therefore, they should ideally also receive training on the TA role, in order to best understand how to provide appropriate, more holistic support.

7.    TA’s should understand school policies and correct procedures for emergencies around pupils with SCI and have a laminated sheet of emergency procedures at all times. TA’s (and students they work with) should also be involved in developing and reviewing any risk assessments.

8.    Recognise that students may require different support from different staff. A student may have an learning support assistant to help in the classroom and a PA to support personal care needs.  Work sensitively with the student to identify what requirements they have on both physical and educational levels and what’s the best menu of support to meet those requirements.  This should also be well coordinated with support at home so the child or young person does not have to manage too many carers.

9.    Children and young people may not like to be ‘singled out’ for receiving extra help in the classroom.  Work to create an understanding and sensitive culture with teachers and their peers.

10.  The right balance of support may be difficult to achieve right from the start.  TA’s should work to support pupils so they are appropriately challenged, using their skills and supported appropriately during any assessment. This may involve close communication and regular meetings with the child or young person, their family, the TA, teachers and other school staff.  Review meetings are a good place to bring up and resolve these issues.

11.  Recognise that while individual, 1:1 support for children or young people from a TA may be seen as beneficial, it can also be isolating for the child or young person.

12.  Break times and free time- does the student need a TA hovering around when they are socialising with their peers, consider their social development and give space and independence wherever possible. This goes for inside the classroom too.

13.  Support from a TA should be regularly recorded.

“The partnership between a student and their teaching assistant is inevitably, a close one. It’s important both parties have someone to mentor the relationship. As SENCo I have responsibility to ensure the needs of the student and TA are met and to ensure the relationship works smoothly. Out student and her TA make a great team – but both sides need someone available to ‘offload’ to when necessary.” SENCo, Gloucestershire

TA recruitment

Recruiting the right TA is very important.  Back Up has helped some schools in the recruitment process and gathered these strategies along the way:

1.    Share job descriptions with other schools.

2.    Involve pupils and/or school councils in recruitment.

3.    Ensure job descriptions include supporting a child or young person’s personal care needs.  School staff are not obliged to support this if it is not in their job description (though they can volunteer to help), so schools should build up a pool of possible supporters in case it is required.  (All staff performing personal care should be agreed with the child or young person and fully trained.)

4.    Decisions about recruitment should involve and be made with the pupil who will be working with the TA. Personality and empathy matter along with connectivity with pupils.

5.    The person should understand pupil requirements and appropriate boundaries, such as the need for the student to spend time with their fellow pupils.

Helpful guidance on the role of a Learning Support Assistant/Teaching Assistant from Returning to School: A Teachers Guide for Pupils with Brain Tumors by Cerebra (2006).

Teaching Assistants/LSAs do:

  • Discuss problems and offer constructive criticism
  • Praise ideas and work well done – build up a pupil’s strengths and independence
  • Show patience – it may not be realistic for the pupil to work to the same speed as the rest of the class
  • Allow the pupil to try their best and gain a sense of achievement
  • Although it is hard to sit back and watch a pupil flounder with a task, it is sometimes necessary and in the pupil’s own interest
  •  LSA support need not necessarily be provided by one person. LSAs attached to a department can provide extra subject expertise, particularly in exam classes. Various input by several LSAs may provide welcome relief for the pupil and create less dependency on the support of the LSA. The flipside is that an LSA will not necessarily be able to track and observe a pupil coping brilliantly in some subjects while struggling in others.

Teaching Assistants/LSAs do not:

  • Allow pupils to take credit for work which is not their own
  • Complete assessed written work for the pupil
  • Make decisions for the pupil, but help the pupil decide
  • Carry out practical tasks being assessed
  • Fail to inform the teacher of assistance given
  • Write or draw anything the pupil has not told them to do
  • Offer hints and suggestions, but instead elicit responses carefully
  • Make contributions to the creative process
  • Help inappropriately – it can be disabling

This section included information from:

ALLFIE – The Inclusion Assistant: A training course for supporters of young people with high level support needs within mainstream education https://www.allfie.org.uk/wp-content/uploads/2018/06/Inclusion-Assistant-Training-Pack.pdf

Knight, A, Petrie, P, Potts, P and Zuurmond, M. (2008) The school lives of children and young people with a spinal cord injury. Thomas Coram Research Unit, Institute of Education, University of London. Report for Back Up.

Guidance on the special educational needs and disability (SEND) system for children and young people aged 0 to 25, from 1 September 2014

Support from spinal cord injury charities

There are four national charities in the UK dedicated to providing services for people affected by spinal cord injury; they are Back Up, Aspire, Spinal Injuries Association and Spinal Injuries Scotland. Below is a synopsis of the services each charity provides and contact details. 

Back Up

At Back Up we understand a spinal cord injury can be devastating, but we believe it shouldn’t prevent anyone from getting the most out of life.

Back Up is for everyone affected by spinal cord injury, regardless of age, level of injury, or background. We are here for family members too.

Our services include mentoring, wheelchair skills training and activity courses as well as support in getting back to work or school after an injury. All our services help to build confidence and independence.

Outreach and support

Our Outreach and Support Team – made up of Back Up staff and volunteers – regularly visit each of the 11 spinal cord injury centres around the UK to meet patients, lead wheelchair skills training and patient education sessions. They also offer a regular telephone contact service which is available to anyone with a spinal cord injury.

Education inclusion service

Back Up’s Education Inclusion service aims to support children and young people to be fully included in their education; from nursery and early years, right through school to further education, such as college or university.

The support we offer for parents includes:

  1. Support, advice and guidance for when their child is preparing to start, return to education, or change schools, college etc.
  2. Collaborative support, including liaising and working effectively with hospital, education, health and therapeutic professionals to make sure their child’s return to education goes as smoothly as possible.
  3. Matching parents with a trained volunteer mentor who is also a parent of a child or young person with spinal cord injury
  4. Advice about talking to their child about changes to their body
  5. Arrange for an Education Advocate to visit the education establishment and support parents in review meetings and general support in education

Support for children and young people:

  1. We can organise for an Education Advocate to visit the child or young person at school, college or university to support with any issues or simply provide advice and tips to ensure a positive education experience
  2. We can link the child or young person up with another young person who has a spinal cord injury to chat informally about school
  3. We can talk to classes and help classmates understand about SCI to make sure the child or young person is fully included in everything when they return to school
  4. We can deliver presentations about spinal cord injury to staff and students. These can range from small group discussions, to class or whole school assemblies

This can be done with the child/ young person or they be part of the audience depending on how they want to be involved.

Support for schools:

  1. We can help schools access the information, advice and support they need to ensure a child or young person with spinal cord injury is able to be fully included at school.
  2. We can speak to or arrange a visit to schools to help the teachers to prepare for the child’s return after their injury, and help make sure that they are included in everything at school.

Mentoring

Our accredited mentoring service links people with a trained volunteer mentor who is a similar age and injury level to them or a family mentor whose relative has a similar injury. Our mentors come from all walks of life and we can often link people with a spinal cord injured peer or relative whose life experiences are relevant to them. Once we have matched people up with a mentor they will call them on the telephone to arrange how often they make contact and whether they speak regularly over the telephone, or if possible meet up. Most mentoring relationships take place over 10 contacts and can cover issues including the following:

  • Adjusting to life with spinal cord injury
  • Going back to education or work
  • Finding out about activities and sports
  • Being a parent with spinal cord injury
  • Starting a family

Wheelchair skills training

We run wheelchair skills training at all eleven spinal cord injury centres across the UK. The sessions are always tailored to the group and we run both manual and power chair training sessions. A typical manual wheelchair session will cover pushing technique, getting over obstacles, tackling kerbs and thresholds, back-wheel balancing and may also cover steps and transfers if time and equipment allows. A typical powerchair skills session will focus on spatial awareness, including how to get in and out of tight spaces, how each powerchair is different and what techniques might be achieved by different models, learning about the chair set up and the different features. All our wheelchair skills trainers have a spinal cord injury and can draw from their own experiences to help participants develop a vision of what is possible to achieve.

Courses

Our residential activity courses aim to increase confidence and independence. They are for people of all ages, backgrounds and all levels of injury. We run two courses for under 18’s. The course for under 13’s is five days long and children are accompanied by a parent, there is often space for families to bring other siblings along too. The course for teenagers is seven days long, and teenagers come away on their own. Both courses provide under 18’s with a spinal cord injury with the opportunity to meet other children or young people both with and without spinal cord injury, and try lots of different activities like canoeing, climbing and abseiling, wheelchair skills, swimming and archery in a safe, fun and supportive environment.

For further details please contact admin@backuptrust.org.uk

Aspire

Through its projects and programmes, Aspire offers practical support to people living with a spinal cord injury in the UK so that they can lead fulfilled and independent lives in their homes, with their families, in work places and in leisure time.

Aspire’s core services provide the practical support needed by those who sustain spinal cord injuries. Aspire services cover a range of areas and are available to new patients in the NHS Spinal Cord Injury Centres, to those who have just been discharged from hospital and to people who have been living with their injury for years.

Aspire’s services include:

Their housing programme provides fully accessible properties around the UK that can be used on a short-term basis whilst someone is adapting their own property or hunting for a permanent home. The Aspire Independent Living Advisors work in the Spinal Cord Injury Centres, providing advice and guidance to the patients and ensuring they get the support and services they need. Aspire’s Assistive Technology facilities in the Spinal Cord Injury Centres ensure that everyone, regardless of the level of their injury, has independent access to a computer. Aspire Grants gives funds to people to help them buy the specialist equipment they need to live a more independent life.

Aspire also provide opportunities for everyone to take part in sport, exercise and activity at the Aspire National Training Centre and in schools, through their Sports Development Programme. This includes integrated leisure activities such as going to the gym and swimming, and getting people involved in sports like Wheelchair Rugby, Powerchair Football and Wheelchair Basketball. Aspire firmly believes that there should be no barriers to participation in sport.

For further details please contact info@aspire.org.uk

Spinal Injuries Association (SIA)

SIA offers a pathway of support by aiming to be there for a newly injured person from the time of injury and for the rest of a person’s life.

Their support is given by spinal cord injured people, all of whom can offer their lived experiences of spinal cord injury.

Support starts in the early days during hospital treatment, whether at a specialist Spinal Injuries Centre or at a District General Hospital where patients can access their peer services.  Following discharge they offer a range of other services and publications to provide information to people, including free courses and a Freephone Advice Line.

The SIA Freephone Advice Line provides:

  • Confidential Advice
  • Information
  • Support
  • Letters of support for members pursuing complaints against poor treatment or inaccessible services.

SIA’s Telephone Counselling service gives people the chance to talk in complete confidence, free of charge, to a suitably qualified professional. Sessions can be booked with the Telephone Counselling service by calling the SIA Advice Line on 0800 980 0501

Other SIA services include support in: claiming compensation, finding a solicitor, employment and further education advice, support for family members.

For further details please contact sia@spinal.co.uk

Spinal Injuries Scotland (SIS)

Spinal Injuries Scotland is a voluntary organisation concerned with new and long-term spinal cord injured people, their relatives and friends, along with those involved in the management, care and rehabilitation of the injury.

SIS provides immediate support through the office based Information Service and operate a self-referral information line. They also provide a legal and welfare rights advisory service. Their representatives, who are able to discuss all aspects of living with a spinal cord injury, undertake weekly visits to the Queen Elizabeth National Spinal Injuries Unit.

The SIS Freephone Line offers information to new and long term spinal cord injured, their families and friends. Freephone Line: 0800 0132 305

Spinal Injuries Scotland Peer Support Volunteers come into the spinal unit in Glasgow to speak to in-patients, their families and friends. The Peer Support team is made up of people who have the injury as well as relatives of those who have the injury.

SIS provides outreach support to people in general hospitals throughout Scotland. The Liaison Sisters from the Glasgow spinal unit travel around Scotland carrying out review clinics in other hospitals and SIS go along to offer Peer Support to those attending these clinics.

SIS Link Scheme offers assistance and advice to people in their own area. The link scheme is designed to put people together in different areas so they can find out what is accessible to them and also others.

For further details please contact info@sisonline.org

Academic Support

Students with spinal cord injury may need wide ranging support during their education covering all areas; academic, social, extracurricular, career planning and more.  A child or young person with spinal cord injury has the right to mainstream education and should be fully included and thriving alongside their peers.  Education establishments from nurseries and schools to colleges and universities have a duty to recognise this and offer a wide range of support.

This section focuses on academic support, covering classroom learning, exams, and a case study.

Classroom learning and academic support

Teaching staff will need to consider any adjustments and differentiated learning they may need to make so that all students can actively participate in lessons.

1.    Gain a clear understanding of how the injury has impacted the student physically and cognitively so these requirements can be considered when planning lessons and adapting the curriculum.

2.    Consider how the injury might have changed the student’s learning style (i.e. do they now need to be primarily an auditory learner?) and adjust activities and management that better include that style.

3.    Use existing tools and technologies in ways that support student’s requirements, such as emailing or putting work on the school’s Virtual Learning Environment (VLE) to help students gain easier access.  Understand what assistive technologies are available and used by the student and ensure lessons incorporate and are compatible with these.

4.    Understand that students may face pain and fatigue when they return to school and consider flexible schedules, personalised timetables or starting out with reduced hours in lessons.

5.    Recognise that students may need time off for medical or other health reasons and identify flexible ways to continue to meet their learning needs.

6.    Support students to pursue courses and careers they are interested in and focus on their ability not disability.

Case study on making academic adjustments (from SENCO, Gloucestershire):

Our student did not suffer any brain injury or learning difficulty that would mean that she couldn’t take part in lessons as she would formerly have done, so it’s all been about physical access at our school. What she needed in the classroom was a scribe and that was her choice. We introduced some assistive technology but she has chosen not to use it in school. She is much happier having her TA attend lessons and act as a scribe.

Our student went from being able bodied: used to sitting in a desk, carrying her own books and scribbling her own notes to no longer having that ability. If a young person uses a scribe to record for them, it is important to understand the challenges of processing their thoughts and communicating them to a second party. We are very aware that our student has become an aural learner. She has to take everything in by listening, process it and then articulate a response. This is harder than thinking in your head, writing it out and proofreading it silently.

As our student moved from GCSEs to A-Levels, the level of challenge increased, as it does for all students. The requirements on any learner get harder but we have been mindful that processing speed is an added consideration for our student. This has been in the case in something like mathematical notation which can be extremely difficult to describe. So we’ve been trying to think of ways that the teachers could adapt what they do or how the scribe could work differently, in order to make processing easier.

Being conscious that our student has been forced to adapt to being an aural learner, I focused on helping staff think about their delivery and the way they explain and demonstrate methods in lessons. Staff have been incredibly good at adapting strategies and classroom management. They think about how they can adapt a whole lesson by using group or paired work and shared presentations. Making lessons as interactive as possible, reducing unnecessary recording – or recording information in alternative, accessible formats is paramount. This is good practice for all students anyway.

As SENCO, you still need to remind everyone what the day-to-day challenges are [for students with a spinal cord injury]. It’s very easy to forget just how tiring it is to get around in day-to-day life when you have that level of injury. Staff can also forget that it’s far more exhausting being a learner who relies on assimilating information aurally and processing it, than for someone who can just pick up a pen and jot a note down. It’s far more demanding on just about every aspect of a learner’s processing and cognitive ability because of the physical disability that they live with.

Equipment and technology support

Supporting a child or young person with a spinal cord injury to access and use appropriate technology and equipment is a vital learning experience.  Not only can it facilitate learning and accessing school activities, but it helps prepare them for independence and work in the future.  The equipment and technology support that a student with a spinal cord injury needs is of course dependent on their individual physical and academic requirements.

Some students will be provided with specialist equipment to support learning from an occupational therapist or physiotherapist. Equipment may include adjustable or soft-backed chairs or adjustable (‘high-low’) tables, standing frames, adapted shower and toileting chairs, or adapted support for eating and drinking.  Work with the health team at the spinal cord injury centre to determine what equipment might be necessary and how to obtain appropriate training.

Other students may need assistive technology to use computer equipment, such as:

  • different sizes of keyboards
  • an adapted mouse such as a tracker ball, switch or joystick
  • an integral mouse which is used by moving the lips
  • eye gaze tools that track eye movements to control and move around a computer
  • smartphones or tablets can be good tools for people without much dexterity in their hands but who can swipe
  • voice recognition software

The types of assistive technology that a child or young person requires very much depends on the physical limitations they have because of their spinal cord injury. Children or young people may get support during their rehabilitation in hospital in using technology and other organisations such as ASPIRE or AbilityNet can help with assessment or information about different types of assistive technology.

Remember that access to technology does not necessarily mean effective use. Make sure that staff who will also be working with the student and technology are trained and ready to support the student and to think how to use it effectively for learning.  Any TA’s that work with the student and the IT staff at the school should also be trained in how to use any hardware or software.

“We encourage our student to use other learning styles and assistive technology like voice recognition software so she can be more independent. But for this student, the stage she is at is the one she is happiest with. We don’t want to push her too hard but we do want to make her aware of what is out there. So that when she goes to university and then goes into the world of work, she’ll be able to use these things to get through her day-to-day job.”

SENCO, Gloucestershire

Exams

Facing exams can be hard for any pupil and especially difficult for one who has recently faced a spinal cord injury and a break from school.  Students in this situation may have missed a significant amount of schooling and coursework, and some may even need to repeat a year.

A good first step to addressing this situation is a meeting with the young person, their family and the school’s exam officer to determine if the student can sit exams as scheduled and how to proceed.  Whatever decision is agreed in terms of exams and course completion, work closely with the student and the family to attempt to meet their concerns and needs as much and as sensitively as possible within school and national policies.

If the student is going to be taking exams, certain allowances or access arrangements can be made for them.  These should be made as soon as possible, particularly if they require an application.  See below for more details.

There are two types of access arrangements, which are outlined below.  The information is taken from ‘Returning to School’, a resource created by charity Cerebra.

1. Access arrangements delegated to the examination centre:

Additional or extra time – up to 25%
Rest breaks and food or drink
Separate room
Transcript
Prompter
Bilingual Dictionary for use by candidates whose first language is not English, Irish or Welsh and 25% extra time for pupils who arrived in Britain less than two years ago (Not for English and foreign language exams)

2. Access arrangements requiring application to the awarding body for approval

Additional time over 25%
Reader
Modified examination question paper
Scribe (previously known as amanuensis)
Practical assistance
Word Processor
Use of British Sign Language

Additionally, students can apply for special consideration and allowance of marks, enhanced grading or sitting exams in an alternative location.

Resources

Personal care support

This section covers considerations for schools relating to managing pupils’ personal care.

Personal care support

Many children or young people with a spinal cord injury will need to other people to support them with personal care issues, including getting changed, using the toilet, completing standing regimes, or eating and drinking.  How a child or young person has care needs met can vary, in some cases it will be a trained teaching assistant or care staff from a care agency will support needs.  In other cases – and particularly for younger children – some parents may deliver care.

“When my son started nursery it was quite traumatic for me because it was entrusting all his medical and physical care to somebody. He was catheterised, so it was a lot of intimate care. It was important that I met with his learning support assistant, that I spoke with her and that she could contact me at any time. The big thing was that I didn’t know who it was going to be until he started, and it was nerve-racking. But communication is the key, for them to feel that they could talk to you. I went into the school to look after him, to catheterise him because although he was statemented there wasn’t someone in place who could to that, they hadn’t employed someone who could do his catheter every two to three hours. So I had to go over for the first term. I had to get them to have them trained so that they could catheterise.” Janet, mum of son age 17

At schools, it will often be a TA who performs any required intimate care though sometimes it may be a personal assistant (PA). Schools hiring TA’s should ensure this is included in their job description as school staff are not required to support personal care if it is not explicit in their job description (though they can volunteer to support).

“It can be variable how [using LSA’s and carers] works in schools but I have known it to work really well. Quite often an LSA is in the classroom and can work one-to-one with the student for their learning needs; then the carer is there to meet their spinal injury needs. The carer might come in and help assist with catheter or bowel issues or a standing regime but it works well if they then back off and allow the child to mix, for example at lunch and social time. Schools that are open minded to the issues are going to do really well. There’s no magic answer. They just need to negotiate what works best in each situation for each child.”

Zoe Chevalier, Clinical Psychologist, National Spinal Injuries Centre, Stoke Mandeville Hospital

The following considerations relate to managing personal care in schools:

1.    The child or young person and their families should always be involved and consulted about how personal care is undertaken, what type of care plan is developed or if any change in care is planned. They should help decide who performs intimate care, how it happens and if it needs to be adjusted.  Consent should be gained for any changes or alterations in personal care.

2.    Bladder and Bowel template care plans can be found here and can be used to ensure correct procedures are carried out properly, safely and consistently

3.    Staff should be fully trained in how to undertake any required personal or intimate care (e.g. hoist training, manual handling, involving children or young people), alongside the young person.

4.    Any intimate care should be done as discreetly and with as much dignity as possible.

5.    Intimate care should be done in a sensitive way that also supports the child or young person to be as independent as possible and allows them to provide self-care where appropriate.

6.    Staff should not discuss the students personal care needs in front of other students or staff. Any discussions around the personal care should be done with the young person, parents and/or management and health professionals

“Privacy is so important – for anyone – but especially for children and young people with a spinal cord injury. They want ordinary relationships. They want personal private time and adult carers need to be sensitive and not hover or be overly involved. Some [carers] get it spot on and realise it just needs to be negotiated. This relationship needs regular review and regular conversations with the child, parents, carers, and schools. Schools can help facilitate this – ideally on a termly basis.”

Zoe Chevalier, Clinical Psychologist, National Spinal Injuries Centre, Stoke Mandeville Hospital

Resources:

Health Conditions in School Alliance Bladder and Bowel templates

Emotional support

Students returning to school after a spinal cord injury will need support in all elements of education – learning, social, extracurricular, career planning and more. For a child or young person to be appropriately and fully included, as is their right, schools should recognise and offer this multi-faceted need for support. This section covers emotional, psychological, relationship and sexuality support.

“The school could have been more understanding of the emotional impact that it had on our son. He went off the rails a bit as he lost confidence in the system and was frustrated. It was a bit of knock for him and his anxiety could have been recognised by the school better, even though it was a few months after the operation they could have been more supportive.” Janet, mum of son aged 17

When developing relevant and appropriate support for a child or young person with spinal cord injury, consider the same aims and outcomes you would use for any child or young person. Think about the bigger aims related to learning – both academically and socially – but recognise that you may need to make extra adjustments to achieve the outcomes. It is important that any plan be age appropriate and developed with the particular child or young person at its centre.

Emotional and psychological support

Children or young people with a spinal cord injury will inevitably experience psychological and emotional adjustment alongside changes in their body. These adjustments may be short-lived or recurring and will change as they interact with the significant development processes that occur naturally at these ages.
If you are a child and young person and want to find out where you can get support for coping with your emotions, visit our section 4 d

“As [children and young people with an SCI] are growing and developing, they are going through normal developmental patterns and on top of that they’ve got to negotiate their injury. From a psychological point of view, new issues might arise at different stages. There is a need to review both physical and emotional issues along the way as individuals go through different developmental stages.”
Zoe Chevalier, Clinical Psychologist, National Spinal Injuries Centre, Stoke Mandeville Hospital

However, despite facing significant trauma, research shows that people with a spinal cord injury are resilient and go on to have positive outcomes.

“None of this has been easy for our son. That said positive messages, examples and support all contribute to making the life of a young man far more manageable. He does not think of the problem that he faces, but is driven with an ambition to do things, get about, run his own affairs and to carry on as normal. These aspirations are supported by Back Up and assist us in reinforcing the positive in his mind, and also the minds of those with whom he comes into contact. I believe that Back Up’ schools and families inclusion service is extremely important for those youths who suffer injury early in their lives, as it reminds us all that life goes on, and that spinally injured individuals continue to have ambition and desires in life, and that they should not be
treated differently from others.” Parent of son aged 17

While in hospital, children or young people with a spinal cord injury will have access to a Clinical Psychologist who will meet with them and their families to see how they are coping. They may be referred to a mental health specialist in the community if there is seen to be a clinical need, but this is relatively rare.

“At Stoke Mandeville, we have a strong research and clinical background, and from that are able to say that most people adjust and cope really well in the long term and do go on to do really well and get back to school and education and create relationships. This is a really important message to get across. It’s not the norm that people with spinal cord injuries have long term psychological trauma and difficulty. It’s more normal to cope and make adjustments.”
Zoe Chevalier, Clinical Psychologist, National Spinal Injuries Centre, Stoke Mandeville Hospital

• Children and young people who have a spinal cord injury may feel reluctant to return to school or engage with anything that reminds them of their impairment. Offering emotional or psychological support, as well as being sensitive to their situation, are some strategies to address this.
• Research has shown that re-connection to their communities and social networks are linked to more positive outcomes and adjustments for children and young people with a spinal cord injury.

•Recognise the critical importance of peer support and of maintaining friendships.

“In terms of friendships, that has been the most difficult area, trying hard to encourage situations where her friends can take on role of helping A. eat. We want to leave her to her friends when she can socialise. I want the 6th form to really be the time when she spends more time with friends away from adults, and becomes a more independent learner.” SENCO, Gloucestershire

Assistance that schools can provide in this area will be beneficial, especially during the teenage years.

“One of the main messages we want to give is that we know from research that people with spinal cord injuries who do better in the longer term are people who are able to participate in social and community activities, like being included in school, hobbies, or sports. If children or young people are able to be connected and participate in their communities, go back to studies, have support regarding their career options, and go out with friends, they will do better in the longer term.”

Zoe Chevalier, Clinical Psychologist, National Spinal Injuries Centre, Stoke Mandeville Hospital

Relationships and sexuality support

Sexuality is not often an area people are open about. For me, it is about finding out where that person is in the beginning and never assuming what the experience of this young person is. It’s also about not having any judgments. Michelle Donald, Psychosexual Therapist, National Spinal Injuries Centre, Stoke Mandeville Hospital

“Many [teenagers with a spinal cord injury] are terrified about what lies ahead for them in relationships and with sex … But the issues for teenagers are very much the same for everyone else. Having a spinal injury takes you back to ‘I’ve got to start again’ and ‘How do I map my body?’ and ‘How do I know what I like?’ It’s important to go back to the element of play. That’s often what I’ll talk about – let’s start playing again. I put it back onto a level playing field and normalise it.”
Michelle Donald, Psychosexual Therapist, National Spinal Injuries Centre, Stoke Mandeville Hospital

Relationships and sex are huge issues for all young people and those with a spinal cord injury have the same desires, aspirations and anxieties around relationships that everyone else does. However their relationship to their body has changed and it is common for their self image and confidence to drop. Some young people have said they don’t feel like sex and relationships are possible in their lives anymore or that they can’t believe anyone will ever fancy them. They need to hear the message that they are capable of being attractive and part of happy, healthy, loving relationships just like everyone else is. Schools should help tackle this message early on in a young person’s return.

“Changes in sexual function are common after spinal cord injury, but we know from experience that people do go on to form romantic and sexual relationships, and it is possible to build a family and have children. It’s important to let people and their families know that this is possible. Some parents wonder, ‘Are my children going to have relationships? Will I have grandchildren?’ There may be some hurdles or prejudice but people need to receive good information when the time is right from a trusted source about the potential changes in sexual function after injury, how these may affect them, and what help or options are out there.”
Zoe Chevalier, Clinical Psychologist, National Spinal Injuries Centre, Stoke Mandeville Hospital

Discussing relationships and sexuality – including sex education – with children and young people with a spinal cord injury can seem an intimidating, awkward prospect. Indeed, many disabled young people have reported finding sex education classes presented in such a way to be irrelevant and discouraging, which can add to the feeling that sex and relationships are not possible for them. It is vital that children and young people receive relevant, accurate, and positive information about these issues in a sensitive, inclusive way.

“As an adult with a spinal cord injury, people are more likely to talk about sex. Whereas with a child or teenager, it’s one of those things that unfortunately does still get left out. People ask what is the appropriate age to start talking about these things but there isn’t one – it’s very much dependent on the individual and what they want to know. I think any age you could start with sexual education and the earlier the better – it just needs to be age appropriate.”
Michelle Donald, Psychosexual Therapist, National Spinal Injuries Centre, Stoke Mandeville Hospital

Here are some ideas on how schools can support this area of work:

1 Provide a key worker or staff member for the young person if they want to talk about relationships and sexuality. This should ideally be someone they are close to and who they can bring questions or concerns to. Ensure this staff member has access to information or other support networks to find out answers to questions the young person may have (resources are listed below).

2 Challenge discriminatory attitudes in school, particularly the idea that it is taboo for disabled people to have sex, relationships and families. Present positive images and role models that dispute this idea. This is a message that should be presented early, sensitively and regularly.

“One thing that’s important is to talk to a young person about things like masturbation even if they’re not going to feel it. When they go to school and all their friends are talking about it, they can still be included and still know what they’re talking about. They may not feel it but what they are going to get is what people are talking about at school.”
Michelle Donald, Psychosexual Therapist, National Spinal Injuries Centre, Stoke Mandeville Hospital

3 Ensure sex education classes are done inclusively and sensitively:

a. The teacher may want to speak individually to the young person before the session to discuss any concerns or to find out any pertinent questions in advance. Young people may not want to participate in sex education classes and may prefer to receive information or talk to a counsellor at school or a key staff member they
are close with.

b. Support teachers to find out what is relevant and important for a particular young person’s situation. Pertinent information may relate to physical (eg erogenous zones, increased or decreased sensitivity, sensuality, physical dysfunction and possible adaptations, contraception options), practical adjustments (‘How do I get out of my chair?’ ‘How can I be intimate when I have a catheter bag?’) and emotional (feeling unattractive, unsexy, anxious) questions.

c. Sex education classes should be run so that they are relevant and pertinent to all students who are accessing them. Disabled students should not be excluded from sex education classes.

d. Remind students that all people are individuals and what one person may enjoy, another may not regardless of disability.

e. Students with disability have a right to receive specialist sexual health and education information. However they should also be given the information that everyone is given, as well as any additional handouts or resources that are particularly relevant to them.

f. Ideally, the information that may be particularly relevant to a student with a disability should be presented and offered to all students. This means one student is not singled out or separately acknowledged. If the information is integrated sensitively into a session, it can help everyone have a more equal, inclusive
perspective on sexuality.

4 It can be daunting to try to start a relationship with a person who is always accompanied by another adult. Ensure support staff are not constantly present, giving the young person room to form relationships and develop their own identity with their peers.

5 Support families to allow their child to grow up, develop and participate in ordinary teenage experiences. Some parents or families may become overprotective of their child after an injury and need support in allowing their child to make choices and take risks that all teenagers make. Some families may find discussing relationships and sexuality particularly difficult. More information on organisations and networks that
support families can be found in section five.

If you are a young person and want to find out more about relationships and sex, visit section 4.d of our toolkit.

Resources

life often felt by students

Education transitions

Students returning to school after a spinal cord injury will need support in all elements of education – learning, social, extracurricular, career planning and more.  For a child or young person to be appropriately and fully included, as is their right, schools should recognise and offer this multi-faceted need for support.  This section covers planning for education transitions and careers guidance.

Transition and leaving school

There has been a recent emphasis on the need to support young people leaving secondary school and going on to other education or other activities. This area of work is often called ‘Transitions’.

Transition planning

In Year 9, young people with an Education Health Care Plan should be supported to develop a Transition Plan that helps them to start thinking about educational and career choices after secondary school.  This process begins with a Transition Review and should involve professionals who have been involved in the young person’s development, including the SENCO, social services, the GP or community nurse, someone from the careers service, an educational psychologist, and the young person and their parents. The plan outlines what the young person wants to achieve in the following few years and what support they will need to achieve it. It covers every aspect of the person’s life including education, employment, housing, health, transport and leisure activities.

For students with spinal cord injuries who do not have an EHCP, a Transition Plan is still a useful and valuable tool to use to prepare them to leave school feeling confident and well supported.

Career planning and guidance

The educational choices for a disabled young person at age 16 are the same as for any other 16-year old: to stay at school, go to a sixth form college or college of further education. Subsequently, depending on exam results, it may be possible to go on to university.

Materials from the Spinal Cord Injury Centre at the Royal National Orthopaedic Hospital, Stanmore

“Children and young people with spinal cord injuries and their parents need to know, from the time of injury, that adult employment should be an expectation and that it is important for independence and life satisfaction. Children growing up with a spinal cord injury need to keep pace with peers by doing activities that develop work skills and schools should play an integral role to help support this process of development.”

Zoe Chevalier, Clinical Psychologist, National Spinal Injuries Centre, Stoke Mandeville Hospital

Careers guidance and support for young people with spinal cord injuries should be approached as it would for any young person.  However, schools should also recognise that this area may be sensitive for young people if they have had to rethink and re-evaluate previously held goals and expectations about what their future lives would hold.

“Children and young people will be thinking ‘What are my options?’ and they may need to rethink some things and re-evaluate how dreams going to fit.  It’s important to promote and tell them there can be a healthy positive image of future.”

Zoe Chevalier, Clinical Psychologist, National Spinal Injuries Centre, Stoke Mandeville Hospital

Additionally, while educational outcomes at secondary school level for young people with spinal cord injuries are equal with the rest of the population, employment levels for spinally injured adults are lower.  While people with spinal cord injuries may not have lower qualifications, it is harder for them to find and maintain employment.  Therefore they may need extra support in thinking about their future career and what support mechanisms, tools, and resources they can use to make it happen.

Some important strategies that may help:

1.    Provide positive reflections of life after having a spinal cord injury, including people in relationships, leading healthy lives and in careers.

2.    Engage and connect positive role models with students.  Contact Back Up Education Inclusion coordinator to get support with linking students to positive role models.

3.    Consider connecting a teacher or staff member who has a good relationship with the student so the student has someone to talk to about emotional or difficult issues.  Support this teacher to recognise when further assistance may need to be sought.

4.    Liaise with the clinical psychology team or community mental health team if you have any concerns about the child’s mental health.

5.    Provide information and training on use of assistive technology and equipment that can support independent living and career-related activities.  See section 3.3.a for more information

Resources:

Involving children, young people and families

Involvement of children, young people and families is an intrinsic part of inclusion. While the assessments and opinions of education and health professionals will also be vital to the coordination of including a child or young person with a spinal cord injury, it is the school’s response to the experiences of that individual that will determine the success of his or her inclusion.

“My advice to staff is to talk to the student, don’t feel bad or embarrassed or shy about talking to them about their spinal cord injury. This might seem like a little thing but it can make a huge difference to the student. Asking them what they want is so important.” Ben, 17

The most important thing to remember about the inclusion of a child or young person with a spinal cord injury is to ensure they are at the heart of the process.

“The absolute key thing is person-centred planning so ask the child.  This is where schools often go wrong because they’re looking for this pill that someone else is going to give them where actually they have the power themselves to change what they are doing.  That young person is the absolute number one best person to tell them what they need.  And people forget that.  They’re waiting for some expert of genius to come along and tell them where actually the expert is right in front of them – it’s a young person.”

Nigel Utton, Headteacher, Bromstone Primary School and Chair, Heading for Inclusion

The process of participation and involvement will depend on a number of factors including the age of the child or young person, their personality, how they are coping with their injury, and their previous experiences of school life, among other factors.  But regardless of all these factors, the characteristics of this participation should always be the same: consistent, genuine, transparent and responsive.  Legislation supports children’s participation in all matters affecting them, that their views are respected and their best interests are considered at all times in article 12 of the UN Convention on the Rights of the Child (ratified by the UK in 1991).

“Most of the things I’ve learned are by talking to the child. They’re the experts on their needs and they can help you quite a lot.”

Dr. Phil Vickerman, Professor of Inclusive Education and Learning, Liverpool John Moores University

Children and young people have said repeatedly that they want to be consulted on their own lives.  From an Institute of Education report on the school lives of children and young people with spinal cord injuries:

“Ask the person in the wheelchair what they want to do and what they think about things instead of asking the parents all the time.” Julie, 18

Involving parents and families is also very important for the inclusion of their child.  Not only will families be able to provide valuable insight and information into the requirements of the child, but they will need to feel involved so they can properly support their child’s adjustment.  Additionally, families will also likely be struggling with the stress and trauma of a spinal cord injury and will greatly appreciate the support of an inclusive school environment that feels welcoming and open to their child’s new needs.

Strategies and methods for involving young people and their families:

1.    Support children and young people to participate and contribute in ways they are comfortable with.  It may be daunting and difficult to make decisions related to their new circumstances, so sensitivity, encouragement and responsiveness are important characteristics of the process of involving the child or young person.

“Following our student’s trauma, she was surrounded by a lot of professionals involved in her rehabilitation and the process of integrating back into home and school life. The presence of so many people is to help but it can also be overwhelming. Suddenly an awful lot of people to deal with. At school we were aware that this can all be ‘a bit much’. We felt it was important to encourage our student to make her own decisions and express her views but only when she specifically wished.” SENCO, Gloucestershire

2.    Organise a meeting involving professionals, families and the child or young person before they return to school.  This meeting could communicate the child or young person’s requirements, determine how the school should respond to these and assess physical access alongside professionals like an occupational therapist.  Children and young people should be given the option to attend and participate in these meetings.

3.    Hold regular review meetings to go over the current support plan, how the student is doing and any further adjustments that need to be made.  Include the child or young person and family in review meetings and use them as times to discuss goal planning and future decisions, any classroom concerns, transport issues, or access or equipment problems.  See section 2.2 for more information on integrated support models.

4.    Consult with the parents and the young person about accessibility and involve them in the planning of any changes to buildings.

5.    Be clear and consistent in your communication with the child or young person and their family.  They should know what to expect from the school and be able to rely on it.

6.    Work with the child and young person in the selection and use of specialist equipment.  Some students with spinal cord injuries in a recent study on their school experiences reported feeling singled out by being given equipment they didn’t actually feel was necessary.

“The tables were fine! It irritated me because they didn’t need to change it.  I didn’t even need a ‘high-low’ table – they were making a big fanfare over something that was fine.  It meant I was restricted where I sat every lesson.  I had to sit at the front which was annoying.”  Julie, 18

7.    Inform parents of how you have managed the practical issues, particularly those related to health and medical needs. (E.g. What medical staff are available?  What 1:1 support will the child have?  How will you manage their catheters and any manual handling requirements?  What happens if the child falls out of their wheelchair?  How will your child participate in physical education?)

8.    Encourage parents to share any relevant aspects of the child’s medical care, though there may be some hesitation or resistance to be open about the issues the child or young person is facing.  You should be sensitive to this, particularly as the entire family has experienced significant trauma. Providing privacy and a comfortable environment can help in situations where difficult issues are discussed.   Parents are important sources of information – and this communication will also help them remain involved in their child’s support and education.

Suggestions from a Back Up workshop involving peers of a young woman in the process of re-inclusion, October 2009)

1.    Find the best ways to elicit the views of the young person to be included, or re-included.

2.    Take into full consideration the views of the young people in relation to all aspects of planning for their inclusion, or re-inclusion.

3.    Support the young person in thinking about how they want to plan for their inclusion if they are unsure about the process – i.e. explore how peers/staff may learn about spinal cord injury; if they would like to be present at meetings with professionals coordinating their care and if not, explore the option of an advocate who can voice their ideas and concerns.

4.    Recognition that focussed thought, learning and planning do need to take place to make successful inclusion possible, even though the aim of inclusion is to ensure an equal playing field, and ‘business as usual’ situation for everyone.

5.    Best ways to involve peer students in the inclusion process need considerable thought, recognising that opinion will always straddle a wide range of views and perspectives. Creating a space for lively dialogue is much more important than striving for full agreement.

Balancing the needs of students to be included or re-included with the needs of their peers, is vital, recognising that within the inclusive philosophy, everyone’s needs are equally important.

*Knight, A, Petrie, P, Potts, P and Zuurmond, M. (2008) The school lives of children and young people with a spinal cord injury. Thomas Coram Research Unit, Institute of Education, University of London. Report to the Back-Up Trust.

Accessing physical education

Why it is important to make PE inclusive for all and how can this toolkit help you?

The involvement of children and young people with a spinal cord injury in physical education and school sport is often one of the biggest hurdles to their inclusion in schools. It is, therefore, a particularly important area to focus on in preparing for and ensuring a student’s welcome back to school. This toolkit can support you to be an outstanding teacher. Listed below are strategies, resources and information on how to support inclusion in the gym and on the fields.

Ofsted considers inclusion to be a key element of an outstanding school and outstanding teaching:

Schools cannot be judged as ‘outstanding’ for overall effectiveness unless they have ‘outstanding’ teaching. Part of the descriptor for outstanding teaching includes:

“almost all pupils currently on roll in the school, including disabled pupils, those who have special educational needs and those for whom the pupil premium provides support, are making rapid and sustained progress” (School Inspection Handbook, Ofsted, January 2013)

When evaluating the quality of teaching in the school, inspectors will consider the extent to which teaching strategies, including setting appropriate homework, together with support and intervention, match individual needs. (The Framework for School Inspection, January 2013)

In the Framework, Ofsted also considers:

  • The extent to which the education provided by the school meets the needs of the range of pupils at the school, and in particular the needs of disabled pupils and those who have special educational needs.
  • The extent to which schools provide an inclusion environment which meets the needs of all pupils, irrespective of age, disability, gender reassignment, race, religion or belief, sex, or sexual orientation.
  • How well disabled pupils and those who have special educational needs have achieved since joining the school

“When they do apparatus, I can’t do that so I feel left out so I do some walking. I remember one time I had to go in my standing frame, and they were doing apparatus, so instead of watching them do PE I had to do school work and felt like I’d been naughty. ” Alison, 10

Young people’s Top 15 tips for a teacher to make a big difference to a spinal cord injured young person’s PE experience

  1. Ask me what I like to do in PE, both before and after the accident (and ask my parent too). Don’t be afraid to ask me for ideas on how I can be included
  2. Always make me feel involved and do not leave me left sat on the side-lines, feeling left out or excluded
  3. Try and do as many activities that I can do as possible – sports that can be adapted, like basketball or table tennis so I can take part just like the other pupils
  4. Do a normal PE lesson, but always adapt it so I can take part. Do it in such a way that it is not obvious and everyone in the class gets something out of it
  5. If you are doing a team sport or are working in a group make me a captain
  6. Be adventurous with your adaptations to an activity
  7. As my PE teacher, to talk to the school about what they can put in place to support me
  8. Do floor activities where everyone is on the same level as I am
  9. Do swimming pool games (this is good exercise for me)
  10. Think about the PE class coming to my local fitness suite with me
  11. Get able bodied children to play in chairs if possible (e.g. wheelchair basket ball) or get a local sports club to come in and do demonstrations or Back Up to speak to the school
  12. If I don’t want to get involved in the main activity, get me involved in other ways (e.g. scoring, refereeing, and setting up coaching drills) but don’t offer this as the only solution, include me as much as possible so I am equal to my peers
  13. Explore the possibility of having my physiotherapist involved in the planning of the PE lesson
  14. Make sure the other children are understanding about what I can and can’t do
  15. Don’t be afraid to try, if it doesn’t work we’ll do it differently next time

“My PE teacher made me do everything – they adapted everything. I’m not into sport – I didn’t have a choice! My teacher adapted it all so I had to take part. She was quite strict so she didn’t want me sitting on the side and not taking part.” Julie, aged 18

Top 6 inclusion strategies for teachers

Supporting all children and young people to participate in PE or sport is reliant upon high-quality teaching and coaching and skills that teachers and coaches already practice.

The following ideas can help you in how to include all children and young people:

1. Speak to the young person first

Find out how they feel about taking part in PE and what they want to do. Include them in the planning of the lessons.

2. Inclusion Spectrum and STEP principles

Any activity can be adapted and modified using the Inclusion Spectrum and STEP tools. The Inclusion Spectrum is an activity-centred approach to the inclusion of young people of all abilities in physical activity. Inclusion can be achieved by changing the way in which the activity is presented.

The Inclusion Spectrum provides physical activity/sport coordinators with different methods of supporting inclusion. By delivering activities differently we can balance different needs within the group and so help to maximise the potential of all young people. The STEP principles (Space, Task, Equipment and People) can be used to support the Inclusion Spectrum ‘Change to Include’ approach. Changes in the way the activity is delivered can be made in one or more of the STEP areas. See the Sainsbury’s inclusive PE training for information on the Inclusion Spectrum and STEP principles.

S stands for SPACE

  • What is the effect of the size of play area chosen?
  • Can you change surface so it is suitable for a wheelchair?
  • Is the facility accessible including toilets and changing rooms?
  • Decrease targets and distances to make things easier
  • Working in zones enables people of similar ability to be matched
  • Is there room to move around?
  • Can you use a tackle free zone?

T stands for TASK

  • Demonstrations/Communication – ease understanding
  • Adapt rules for the whole group or for individuals
  • Adapt the task for some young people so that they can use adapted equipment
  • Adapt a game to use zones so everyone can play
  • Choose a sport/tasks that is accessible to all e.g. Avoid high jump or run parallel with another accessible activity.
  • Rule changes:
  • Tennis- two bounces
  • Basketball- two touches of wheels before having to bounce ball
  • Table tennis- Other player plays seated

E stands for EQUIPMENT

  • Size – a larger ball is easier to hit and to receive
  • Size – can you make the length of a handle shorter/longer on a racket / bat?
  • Size – can you reduce the height of targets? e.g. lower badminton net
  • Is there sport specific specialist equipment? e.g. wheelchair football attachment
  • Does the wheelchair have anti-tip fitted?

P stands for PEOPLE

  • Group Dynamics – working in pairs and small groups
  • Vary Groupings – use mixed ability groupings and similar pairings – not the same every lesson
  • Select team roles carefully – to challenge but not frustrate
  • Let them try – never assume they can’t do it and work with the young people on adaptations – what works and what doesn’t
  • As a coach your position is important for people to hear and see

Examples of applying the STEP principle:

Orienteering

S: Create a course that does not include grass or extremely uneven surfaces, ensure than the overall distance of course is appropriate
T: Remains unchanged
E: Ensure than all punches are at an accessible height and location
P: Can you put participants in pairs, can support with gradients if required

Tennis

S: Reduce size of court to ensure more opportunities to practice various shots
T: Two bounces before ball has to be returned
E: Remains unchanged
P: Remains unchanged

Football

S: A tackle free zone eg. A wing
T: Remains unchanged
E: Wheelchair football attachment for front of chair
P: Remains unchanged

STEP information has kindly been provided by WheelPower – British Wheelchair Sport. For further information please contact them via info@wheelpower.org.uk or 01296 395995.

3. Training for PE teachers

Consider specialist courses for teaching PE for young disabled people, though consider if the course also covers teaching and adapting activities in mainstream schools rather than focusing on teaching in special schools.

  • The Sainsbury’s Active Kids for All training is designed to help teachers to embed inclusive practice in their planning, delivery and assessment within the PE curriculum. Providing teachers with a clearer understanding of the needs of all pupils and to be able to use teaching strategies to ensure all pupils are engaged and make good progress, both of which are essential in outstanding teaching. To book your free training place visit Sainsbury’s Active Kids for All.
  • The Youth Sports Trust initiative, Top SportsAbility is a free online resource for schools and offers practical advice to teachers, learning support staff, and other sports practitioners. It consists of video clips and downloadable content showing ideas and strategies around the inclusion of young disabled people in physical activity. Register here for the resource.
  • Aspire InstructAbility is a multi award winning bespoke programme designed to engage disabled people in the fitness industry as gym instructors and gym users. InstructAbility was set up by Aspire, the spinal cord injury charity, and is funded by Sport England. The scheme, delivered in partnership with YMCAfit, provides disabled people with free, accessible fitness industry training and qualifications followed by a voluntary industry work placement.
  • Paradance UK offers and runs courses for people who want to provide their own inclusive dance or Para Dance Sports classes.
  • Link with your local SEN school, as they may be able to provide advice in adapting sporting activities, support you to run an adapted lesson and provide equipment. Contact the SEN team in your local authority to find your local special schools.
  • The NSPCC Safeguarding deaf and disabled children in sport. The resource includes guidance and information as well as information on a range of disability types and implications for coaching.

“[Inclusive] coaching sessions are actually about the expert experience of a coach to know how to adapt a session to include disabled children. Inclusion requires a lot of creativity in the coach because each child is different and unique, regardless of whether or not they have a spinal cord injury. It’s not something that is written in black and white. Knowing how to adapt an activity is where coaching skills come in.” George Timotheou, Sports Development Manager, Aspire

4. Specialist equipment and adjustments

These organisations can help with mobility equipment which enable spinal cord injured young people to access PE more confidently and give greater independence at home, at school and at play:

Action for Kids
Cauldwell Children
Children Today
Cash4Kids
Dan Maskell Trust
Family Fund
Get Kids Going
READY Charity
Lords Taverners
DTD Charity
Variety Club
Whizz Kids

The Directory of Grant Making Trusts is a useful source of charitable trusts, but there is a cost for purchasing a copy. Alternatively, contact your local library which may have copies available.

Examples of specialist equipment includes lower netball nets, a low table tennis table (or a table where the roll bar is removed / further back), balloon balls, larger tennis rackets or those adapted with a special strap and bean bags.

Swimming: If a school has a swimming pool or organising swimming activities, consider suitable changing facilities and use of a hoist for entering and leaving the pool. The temperature of the pool may also need to be increased.

  • Guidance on assessing development and progression inclusively can be found on the Youth Sport Trust web site here
  • General information on ‘P scales’ for students with Special Educational Needs can be found here
  • The statutory programme of study for PE at Key Stages 3 and 4, and the attainment target level descriptions are accessible here

“My physiotherapist would often come into school, one week it was during a PE lesson. I suggested incorporating my physiotherapy sessions with the PE lesson. The physiotherapist sent a monthly fitness programme to the school, which linked to the PE curriculum and I got updated on my progress. When the physiotherapist couldn’t come to the lesson, friends, other students and PE support staff would help me with the exercises, which I really liked. I preferred to do some of the lesson separately in the gym on my own for privacy, but other people may have preferred to have it incorporated into the lesson, that’s why it is so important to ask the person involved. I was getting exercise, doing physical activity, still doing the curriculum and it was helping me with rehab too, it was a great option for me.”
Ben aged 18

5. Identify opportunities for young people with a spinal cord injury to excel in PE and other outdoor activities

There are a number of organisations and schemes designed to motivate and support disabled young people to participate and develop their athleticism and physical activity. There is an appendix of disability sport organisations at the end of this document.

The national bodies of disabled people in sport and physical activity work with those in the relevant sectors to provide inclusive opportunities as well as encouraging more disabled people to take part in sport: English Federation of Disablity Sport, Disability Sport Wales, Scottish Disability Sport, Disability Sports Northern Ireland

  • WheelPower – British Wheelchair Sport: Pro-active referrals can be made for children and young people to find local disability sports groups and organisations.
  • Active Partnerships are networks of local agencies committed to working together to increase participation in sport and physical activity.
  • Partners include National Governing Bodies of Sport and their clubs, school sport partnerships, local authorities, sport and leisure facilities, primary care trusts and many other sport and non-sporting organisations. Find your local Active Partnership here
  • Parasport has been designed to inspire, educate, inform and signpost disabled people, and those interested in disability sport, to high quality opportunities and disability-friendly sports club in your area.
  • Equal Adventure ‘You Can’ Bursary is an exciting scheme for young adults with disabilities, aged 16 – 24, who wish to go on their first self-supported expedition or scientific fieldwork.

6. Inclusive PE Case Studies

The Activity Alliance works to make active lives possible by enabling organisations to support disabled individuals to be and stay active.

A 2008 report of the school lives and experiences of children and young people with spinal cord injuries showed that nearly 2/3 of those interviewed in the study had experienced problems, sidelining or exclusion from PE classes.

Unsurprisingly, a 2001 Sport England/University of York report also found that in nearly all contexts, participation in sport by disabled young people was lower than for the overall population of young people. Those with a mobility-or self-care-related disability were the least likely to participate in sports, and this lack of involvement was not due to lack of motivation or desire to play; rather it was down to external barriers.

Some of the experiences of exclusion and identified barriers from these two reports included:

  • Inaccessibility of sports pitches
  • Attitudes and comments from PE teachers
  • One student was told he was a ‘hazard’ when playing rugby and was encouraged to do something else.
  • Being segregated as a group of disabled people
  • One school decided to put all the disabled children in one race on Sports Day, creating a stigmatizing experience
  • Activities that are not adequately adapted
  • Full exclusion from the subject of PE
  • Unsuitability of local sports facilities
  • Lack of money to participate in sports outside school

*Knight, A, Petrie, P, Potts, P and Zuurmond, M. (2008) The school lives of children and young people with a spinal cord injury. Thomas Coram Research Unit, Institute of Education, University of London. Report to the Back-Up Trust.

“ When they do apparatus, I can’t do that so I feel left out so I do some walking. I remember one time I had to go in my standing frame, and they were doing apparatus, so instead of watching them do PE I had to do school work and felt like I’d been naughty.”

Alison, 10

Resources

Reports and Research

Training

 

Accessing trips and out of school activities

In the process of including children and young people with spinal cord injuries, schools will often focus on physical access and other adjustments inside school walls.  However, for many children and young people, accessing school trips and experiences outside of school is equally essential to how included they feel.

“Inclusive education means to me as a parent of a disabled child that school trips would be thought out in advance, so that a wheelchair user like my son, would be able to access and get the most out of the trip just as somebody else who isn’t in a wheelchair.” Janet, mum of son 17

All students are entitled to inclusion in school trips.  The Equality Act stipulates that schools must not discriminate in the way they afford pupils access to a benefit, facility or service, which includes school trips. Treating a pupil less favourably, or policies and practices that result in pupils with a particular characteristic being treated worse than other pupils, can be seen as direct or indirect discrimination.

Anticipatory Duty

As per the Equality Act 2010 the duty to make reasonable adjustments in education is ‘anticipatory’. This means schools must consider in advance what they need to do to make sure all disabled pupils can access and participate in the education and other benefits, facilities and services they provide for their pupils.

Any organising or planning of trips and activities should plan for the inclusion of students with disabilities from the outset, and should ensure appropriate ‘reasonable adjustments’ to enable participation.

It is the school’s responsibility to fund these reasonable adjustments and they are never allowed to charge parents for them.

Pupils with special educational needs and school trips

The Equality Act 2010 and the Special Educational Needs and Disability Act 2001 (SENDA) have simplified and strengthened the discrimination laws which protect school pupils from unfair treatment.

It states that:

“It is unlawful for a school or other education provider to treat a disabled student unfavourably”.

Such treatment could amount to:

  • direct discrimination
  • indirect discrimination
  • harassment

And that,

‘every effort should be made to make school journeys accessible to all who wish to participate, irrespective of disability. Teachers should plan for inclusion from the outset, and should make appropriate ‘reasonable adjustments to enable the participation of disabled pupils.’

The Department for Education (DfE) has published statutory guidance on supporting pupils with medical conditions.

Supporting pupils at school with medical conditions, GOV.UK – DfE (Adobe pdf file)

Page 18 focuses on day trips, residential visits and sporting activities. It explains:

‘Governing bodies should ensure that their arrangements are clear and unambiguous about the need to actively support pupils with medical conditions to participate in school trips and visits, or in sporting activities, and to not prevent them from doing so …there should be enough flexibility for all children to participate according to their own abilities and with any reasonable adjustments.’

It says:

‘Consider what reasonable adjustments can be made to allow pupils with medical needs to participate “fully and safely” on visits Carry out a risk assessment with the pupil, his/her parents and relevant healthcare professionals. Plan the trip taking account of the steps needed to include the pupil.’

Schools must make any reasonable adjustments to ensure there is no discrimination. Despite legislation, many disabled students and their families still report exclusion from out-of-school activities.

A 2008 report commissioned by Back Up on the school experiences of young people with spinal cord injuries revealed that the ‘vast majority of young people and parents interviewed identified school trips as one of the most problematic areas of their mainstream school experience.’

The main barrier identified was lack of accessible transport.  Some students reported being excluded from events altogether, and others attended events but had to take alternate transport in cabs or their parents’ cars.  Because school trips are often very social events, this separation was for them an isolating experience.

“With secondary school, I have to go in a black cab – it’s not nice because you feel isolated, kind of thing.  The others go in a school mini-bus, which isn’t accessible.  Black cabs aren’t the most spacious of cars and I have to have a teaching assistant with me and sometimes I have a friend, but it’s not the same.  It’s not being included in the whole group. ” Ali, 15*

Others reported trips that were ‘disasters’ because the location and activity were inaccessible.

“The trip to Hadrian’s Wall – that was a bit of a disaster!  Lots of hills, lots of places I couldn’t go; the gift shop was up a flight of stairs.” Ian, 16

To ensure all students feel included in activities and trips out of school, the following strategies and suggestions may be useful:

1.   Commit to full inclusion of all young people in an activity so some are not separated from the others as much as possible, including transport or other physical elements of the trip.

2.   Recognise the devastating impact that exclusion from activities can have on a young person and their family and understand the importance of full participation in what is a valuable social event.  Disabled children and young people may already be sensitive to being ‘different’ and being treated as such can be a particularly painful experience.

3.   Choose events and venues that are accessible or can be adapted so all students can participate equally.  Check access of catering and toilet facilities.

4.   Build up a register of accessible venues and transport providers, so that school can refer to it when planning trips.

5.   Select a destination that fits both the learning objectives and the needs of the group, rather than asking group members to fit the venue.

6.   Ensure careful planning that happens well in advance of the trip. Planning should include:

a.    Risk assessments that involve any issues or requirements for the child or young person and identify solutions and necessary reasonable adjustments the school and staff should take.

b.    Involving the child or young person to ensure the trip and transport meets their access requirements.

c.     Involving parents and families as required to understand additional requirements and see they are adequately met.

d.    Including access requirements are in all checklists, policy and paperwork that.

e.    Accommodating any additional costs required for accessible transport within the budget for trips and activities.

f.      Understanding any medical and health requirements and ensuring that appropriately trained staff are scheduled to attend.

Additional resources include:

Related news articles:

References:

*Knight, A, Petrie, P, Potts, P and Zuurmond, M. (2008) The school lives of children and young people with a spinal cord injury. Thomas Coram Research Unit, Institute of Education, University of London. Report to the Back-Up Trust.

Transport

Transport can make or break students’ participation in different activities.  It can open up a wider range of activities and events that provide a truly welcoming and equal experience for all children and young people.  On the other hand, a lack of accessible or flexible transport options can limit and exclude students from taking full part in social and educational activities.  As such, accessible transport is at the heart of inclusion.

Good provision of transport can be challenging to provide but very important for children and young people’s feelings of participation.  For many children and young people, transport options are inaccessible, inflexible and prevent them from taking part in after-school or out-of-school experiences.

When schools aren’t able to provide suitable transport, it often falls to the parents or family members to support children and young people to participate in school-related activities.

“[For many disabled students], access to appropriate transport is not ideal at the moment. Children are dependent on their parents’ commitment to collect them if they wish to stay longer at school. If children are picked up by their parents, then they can stay on an hour. But if not, then they don’t have an option.”

George Timotheou, Sports Development Manager, Aspire

Home to school travel and transport for statutory guidance

Department for Education 2014

IPSEA – Independent Provider of Special Educational Advice explains on their website:

“Local authorities (“LAs”) are required to arrange free, suitable, home to school transport for children of compulsory school age who are ‘eligible’, to their nearest suitable qualifying school (section 508B of the Education Act (“EA”) 1996).

Eligible children fall within four categories, set out in Schedule 35 EA 1996:

Here is the government link to apply to your specific Local Authority.

The IASS Network, as part of the SEND Information Organisations Group, published ‘Top myths for home to school transport’ info sheet for parents which aims to help share correct information about home to school transport.

Independent travel training

Schools can also support children or young people to become more independent travellers.  This may be especially relevant for young people who would prefer to travel home with their friends instead of in an adapted taxi on their own.  Many councils provide independent travel training programmes, so look at the local authority web site to see if it is available in your area.

“London transport is a big pain but Back Up has given Ben the confidence to travel and use transport. There are quite a lot of barriers that can be overcome if you have the right training fro the right trainers. The Back Up course Ben went on gave him the confidence to use escalators in his chair. That course had an impact on his every life, having the independence and confidence really does change lives.” Janet, mum of son 17

Resources and further information:

Home to school travel and transport guidance: Statutory Guidance for Local Authorities

Post-16 transport and travel support to education and training: Statutory guidance for local authorities

Wirral Independent Travel Training is one-to-one travel support for young people with special educational needs or disabilities (SEND) to teach you the skills, knowledge and confidence to use public transport on your own

A guide to best practice on improving access to public transport and creating a barrier-free pedestrian environment 

Council for Disabled Children guidance on transport travel

Dealing with bullying

Disabled children and young people are more likely than their peers to be bullied. Schools have an obligation to recognise, address and prevent all forms of bullying. What are some practical, realistic solutions schools can use to reduce this behaviour? The prevalence of bullying in schools – and the disproportionate risk that disabled children and young people face to being bullied – are not new to those in the education community.
Nor is the understanding of the long-lasting impact bullying can have on young people’s confidence, achievement and self-image – areas that are particularly sensitive for children and young people with spinal cord injuries.

“I was extremely scared about going back to school, not knowing what people were thinking. ” Danielle, 17

Stopping bullying

Schools are adopting a range of approaches to prevent and tackle bullying, particularly that of disabled children and young people. Some approaches include:

1 General preventative training and awareness raising
2 Monitoring of bullying and SEN/disabilities and tailoring policies accordingly
3 Raising understanding and awareness of disability
4 Development of a whole-school ethos
5 Preventative and reactive small group work with peers to resolve bullying incidents
6 Individualised support and counselling
7 Confidence raising and skills training
8 Improvements to environments and contexts where bullying often occurs

Many strategies are not appropriate or adapted to suit disabled children or young people, so are ineffective at tackling the bullying they face. Research suggests that an integrated system of support is the most effective approach, and requires effective leadership, systems, policies and targeted training and support.

More information can be found on the Anti-Bullying Alliance website.

“My peers could have been more willing to understand; at times it was a bit hostile.” Laura, 18

Resources

Anti -Bullying Alliance

Top Tips for Teachers and staff

Testimonies of parents and carers

Experiences of children and young people:  Top tips for teachers from young people

Training

Free online training for teachers and anyone working with children

Kidscape Bullying Awareness training for staff

Inclusive Solutions

Support for Parents

Information, advice and support

Advice for parents of disabled children

Disabled children and Bullying

Disablism in class – information specifically focusing on bullying of children with a disability

SEN and Disability

For Young People

If you’re being bullied – advice and support for young people

Young Minds support around bullying

Dealing with bullying

Information on bullying and cyber bullying from the NSPCC

ChildLine – Types of bullying and support available 

Free, safe and anonymous online support for young people from Kooth