Preparing to support students with a spinal cord injury

It may seem daunting for a school or education provider to consider how to include a child or young person with a spinal cord injury. However it is important to remember that with the right support, many children and young people with spinal cord injury do have a positive education experience, other schools have done it and there are support networks, information and many resources available that can help.

Kevin, one of our young volunteers, giving a talk on spinal cord injury at his school

Knowing what to expect

Remember that every child and young person with a spinal cord injury is unique and will have individual specific requirements and needs.  Involving the child or young person, their family and the health teams working with them from the outset will help make sure you understand and learn how to meet these individual requirements.  While many of the requirements will be related to the physical and medical impact of having a spinal cord injury, schools also need to consider the impact on the student’s academic and social life as well as emotional mental health and wellbeing.

This section covers:

  • Learning about the child or young person’s specific requirements
  • Health considerations after spinal cord injury
  • Useful links

If the process feels difficult or daunting, contact the local authority to find out what support is offered.  Most local authorities will have Advisory Support Teachers, who help schools prepare for and include students with various specific needs – including making adaptations, using assistive technology, training staff, using Teaching Assistants, and ensuring inclusive policies and practices.  Additionally, your school will have put other inclusion policies or practices in place and these can often be transferred or adapted

Learning about the child or young person’s specific requirements

” My school was really good. They were eager to get me back. The teachers were understanding about everything, for example if I wasn’t well or couldn’t go in or if I had a hospital or doctor’s appointment.  They understood that it was not going to be the same as before.  They gave me extra time to do things. My advice to schools would be don’t act differently because the young person is in a chair because they are exactly the same person, apart from going from walking to sitting.  That was what I didn’t like – the teachers were constantly asking if I was OK.”

Danielle, 17

One of the most important things to do is to collect accurate and useful information about what the child needs in order to be included in school.  This could involve:

  •  the child or young person’s specific medical requirements and subsequent implications on their life at school (e.g. mobility, bowel and bladder management)
  •  any medical issues that may arise at school or what ongoing medical treatment schools may need to accommodate (e.g. physiotherapy)
  •  any changes to the way the child communicates or learns (e.g. if they become primarily an auditory learner)
  • considerations on how the child can be re-integrated socially into the school community
  • transport requirements
  • what equipment or technology the child or young person may need
  • guidance on providing any necessary mental health support. Remember that the child may have or may be experiencing Post-Traumatic Stress and that families and siblings will often also be going through a difficult time.

“In a school setting, it is very important for teachers to understand the needs and abilities of individual students with spinal cord injuries, and not to assume that all spinal cord injuries will be the same, or that students will have the same sensation and movement control. It is helpful to learn about individual students and ask what support and assistance they need. It is also important to be sensitive to issues such as bladder and bowel management and the need for assistance with activities”

Dr. Angela Gall, Consultant London Spinal Cord Injury Centre, Stanmore

This information can begin to be gathered from the child’s health team at the spinal cord injury centre or general hospital.  Schools should have contact with a spinal cord injury centre or a general hospital while the student is in hospital.  Before discharge, most spinal cord injury centres and hospitals will contact the school and arrange meetings to discuss the child or young person’s requirements – including access, medical, emotional and learning needs.  Often, an occupational therapist will visit the school – sometimes with the student – to discuss necessary physical adaptations or required equipment.

Schools should also be invited to the child or young person’s ‘Discharge Planning Meeting’ when they are discharged from hospital, during which a report will be given on the medical issues.  Additionally, health professionals such as a case manager or liaison nurse will go to schools and provide health education to whoever will be the responsible person at school – possibly a school nurse, SENCO or the head teacher.  Depending on the child’s requirements, other health care professionals such as a community physiotherapist may also become involved in the school.

How a school uses the information about a child’s specific requirements depends on the situation.  There should be a structure and procedure for providing and reviewing support such as an Education Health Care Plan.  An Education Health Care Plan should be developed with the child and family alongside education and health professionals. This plan will detail how to meet the child or young person’s academic, social, personal, medical and emotional needs. See section b, for more information on who to involve and section g, for more information on EHCPs

“Schools can promote inclusion by getting good advice from spinal centres and hospitals about access and the management of the spinal cord injury.  Questions such as “Is this the right place for them?” “What if there is a medical concern during the school day?” “How can we fit in standing regimes?” need to be considered in context, with accurate and up-to-date information.”

Zoe Chevalier, Clinical Psychologist, Stoke Mandeville

Useful medical information for schools and staff

This section has been supported by materials provided by the Spinal Cord Injury Centre at the Royal National Orthopaedic Hospital, Stanmore.

Health considerations after spinal cord injury

Spinal cord injury in childhood can affect health over many decades. Most complications are now preventable. It will be helpful to the child if you ask what help, assistance or special attention they will need, obviously with sensitivity in aspects of personal care.

Bladder

After spinal cord injury the nerve connection between the bladder and brain is lost and the young person may not feel when the bladder is full or be able to control passing urine.  The bladder usually cannot empty as it did prior to the injury and artificial means are required for emptying. Emptying the bladder is often done by intermittent self-catheterisation. The technique can be performed by the young person themselves or the parents or a trained carer or health professional.

Some young people, especially with higher level injuries will have a permanent catheter in (usually a suprapubic catheter – which goes in above the pubic bone). Catheters are connected to a drainage bag which can be emptied every few hours.

Bowel

After spinal cord injury the nerve connection between the bowel and brain is lost and the young person may not feel the urge to open their bowel or be able to control the anus.  This means there is a risk of accidents, however most young people have a bowel routine that they do at a fixed time of day at home to empty the bowel and this usually prevents any further emptying during the day.

Skin

Because of reduced sensation and movement, after a spinal cord injury the body’s usual warnings of impending damage (pressure causing discomfort) will no longer be present and the skin and tissues are at risk of damage.  Because movement is reduced, pressure continues. This can affect the blood supply to the skin and lead to pressure sores. Pressure sores can develop in a short period of time but may take many months to heal, which may mean long periods of bed rest and even surgery.  To help prevent this young people will usually have to sit on specialist cushions and have regular pressure-relieving routines put in place such as sitting forward in their wheelchair for 2 minutes every hour, or using standing equipment to change position during the day.

Temperature Regulation

Children with spinal cord injury above the T8 level (the neurological level of cord injury) may have difficulty regulating body temperature and are susceptible to overheating or hypothermia. Attention to environmental temperature is therefore important.

Autonomic Dysreflexia

This is a condition unique to people with spinal cord injury when the injury is at or above the T6 level.  Autonomic dysreflexia is a very raised blood pressure, usually with a headache and sometimes a skin rash. It can be considered as the body’s response to painful or potentially damaging conditions below the level of the spinal cord injury. Instead of the young person feeling pain or having specific complaints such as a tummy ache or a painful leg, they may get autonomic dysreflexia. Such things as a very full bladder, bowel problems and skin sores can cause the condition.

Although it is usually easily treated, it is an emergency situation and it is important that everybody involved with the young person knows what to do, which can include: establishing and resolving the cause (usually by checking the bladder and bowels are empty), adjusting the person’s posture so that they are sitting as upright as possible, loosen any tight clotheing or garments and, if necessary, ensuring administration of medication by a responsible person.  Medication can be Nifedipine or GTN Spray.  The school should always seek advice from the child’s medical professional on autonomic dysreflexia before the child returns to school.

Chest

Breathing function may be affected due to weakness of the chest and abdominal muscles. They may be more at risk if they have a cold or other infection. Some young people’s injuries are very high and all breathing muscles are paralysed; they will need a ventilator to breathe. They will have carers who are trained in the management of the ventilator and the associated equipment and any treatment required and have input from a physiotherapist.

Spasms

Spasms are involuntary movements of muscles. A spasm may involve only one muscle or be more generalised and may be very short lived or last a long time. If spasms are troublesome then there are physical and medical treatments for them. Spasms can be useful, for example, for transferring in and out of the wheelchair and moving around in bed.  Spasms can occasionally help people with incomplete injuries to stand up and take steps.

Lower limbs

A standing programme is usually recommended for young people with spinal cord injuries.  Usually they will have equipment such as a static or mobile frame, an upright stander or walker, or callipers. Weight bearing is considered to be important to provide a sustained stretch to the joints and soft tissues. Standing may also be beneficial to enable the young person to interact with others at eye level.

Upper limbs

Depending on the level of the spinal cord injury the arms and hand function may be affected. The young person may require a programme to stretch the arms or hands, or may have splints to do this, or to help them use their hands.

Posture and growth

Following spinal cord injury the trunk muscles may be affected and this can lead to changes in the shape of the spine over time. It is important the young person maintains a good posture to try and prevent this (as well as to optimise function, skin care and appearance). This may require the use of a supportive system e.g. cushion, backrest, headrest, armrests and/or a brace.

Fitness and Diet

It is important that young people maintain an optimal level of fitness (see section on play below).

What young people eat and drink will also have a big impact on their general health, in the short and long term. In general, it will involve drinking adequate amounts of water and eating the standard recommended healthy diet, high in fruit and vegetables and low in fat.

Sexuality and sexual function

Sex and spinal cord injury is a complex issue but many people with a spinal cord injury do have full, loving relationships and schools should promote this message.

With any level of spinal cord injury, the person will most likely have some impact on their sexual function. Women might expect to have changes in sensations in the vaginal area, which might cause them to become either less sensitive or lose all sensitivity. Vaginal dryness caused by reduced lubrication may also be a problem. Men may have difficulty or an inability to get an erection, and may notice less sensation in the penis. They may also note difficulty with ejaculation. Because each spinal cord injury is different, the impact of injury on sexual function can also differ.

Other issues that might inhibit sexual function are spasticity which might cause cramping of the adductor muscles of the thighs, making them difficult to separate. Pain syndromes can make response unpredictable, making what once felt stimulating now feel painful. Bladder or bowel continence can cause embarrassment and anxiety, and an indwelling catheter may lessen sexual interest. In addition, weakness, fatigue, and breathing difficulties can also be barriers to sex as it used to be.

Spinal cord injury centres can assist teachers in getting relevant information required for young people with spinal cord injury.  Section 3.3c also has lots of information and resources for teachers on supporting sex and relationships education for young people with physical impairments.  Remember, sex with a spinal cord injury might be different than before one’s injury, but the important message is that many people with a spinal cord injury go on to have good long term relationships, get married and have children.

Useful Links

Knowing who to involve, and how to involve them

When a person has a spinal cord injury, it affects the lives of all those around them.  It also introduces them to new communities, in that they receive an inevitable flood of support from different professionals.  For a school hoping to positively include a student with a spinal cord injury into their community, early preparation and planning for return is vital and the following should be considered:

  • How to connect and provide continuity when a child is in hospital
  • Knowing who to involve
  • Using Early Help Assessments
  • Applying for an Education Health Care Plan

When a child or young person is in hospital

Schools should attempt to connect with the hospital soon after the child or young person arrives there.  Early contact is important, as is setting a time frame for their return.  This early connection will also help make the transition out of the hospital and back to school an easier one.

Try to provide continuity for the child when they return to the same school.  See ideas for providing this continuity and connection with school in section c.

To maintain educational development, school staff and teachers can liaise with hospital teaching staff in order to help the child or young person stay up to date with the curriculum and aligned with what other children are doing.  Involving parents in this communication as well has also been shown to be helpful for families and children.

If there are siblings in the same school system, schools should also be aware of the situation the brother and/or sister are going through.  Some will be anxious about their sibling and will be undergoing significant disruption and adjustment in their family and social lives.

“Most young people will have a ‘contact booklet’ of everyone who is involved, both in specialist centres and in the community. They are advised to have that and keep it up-to-date and usually the schools have that information as well [though it can be] variable across the country.”

Angela Gall, Consultant, London Spinal Cord Injury Centre, Stanmore

When a child or young person leaves hospital

Once a child or young person is discharged from hospital, it is likely most of their health needs will be dealt with by a community health team.  Some spinal cord injury centres continue to see children and young people once or twice a year for a multi-disciplinary review.  Children and young people often also have occasional visits with health staff during summer holidays to continue development.

The psychology department at a spinal cord injury centre will also likely conduct routine reviews with a child or young person to gauge any new issues arising as they go through different developmental stages.  This may involve issues like body image and relationships and sexuality when reaching adolescence, so it can be useful to engage these departments as required.

Voluntary agencies that specialise in work with people with spinal cord injuries, inclusion or working with disabled young people are good contacts for supporting the inclusion process. In particular, Back Up offers a mentoring scheme for young people with spinal cord injury to have the opportunity to talk to another young person who also has a spinal cord injury and have had similar experiences.

“I had a mentor from Back Up.  I found it easier to talk to someone who had some experience of a spinal injury, who was roughly the same level injury as me and the same age. She has been injured for four years more than me.  She helped me with any questions I had, how things were going to work like driving, different transfers (like getting in and out of the car) and things like that.  I talked to her for about a year.  My mentor helped me realise that life doesn’t stop, that it keeps going and that I shouldn’t stop myself doing anything, as I can do anything I want to do, just adapted in different ways. ”

Danielle, 17

Knowing who to involve

 A child or young person with a spinal cord injury will suddenly be surrounded by a group of professionals who are now part of their lives.  These professionals will come from different sectors (health, education, social care) and will likely share a similar goal of supporting the young person but will also have different priorities or ideas about how to achieve this.

“One of the things that I’ve found that works particularly well is having a holistic approach at supporting disabled children in schools.  It’s not just partnership of the parent and the school and the child.  But it’s the partnership of the medical teams, social services, and educational people, etc.  The successful examples of inclusive practice that are working for a young person are where you’ve got lots of agencies and individuals working together for the best interests of the young person.”

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

This increased attention can be overwhelming and difficult to manage for the family and the child or young person.  Schools can help coordinate the involvement of different professionals to make it more effective and easier for 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. 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

Using the Early Help Assessment (EHA)

The Early Help Assessment is a shared strength based assessment tool used in Children’s Services across England and Wales.  It should inform all planning and frame all analysis around children and families who are identified as needing extra support. A preventative early help system is key especially when working with children with disabilities.

“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 (even with the Early Help Assessment) is not always easy, especially as time goes on. Even with ‘established protocols’ and schedules, it may still require one agent to bring all the relevant parties together and ensure that agreed actions happen.”

SENCO, Gloucestershire

The Early Help Assessment or EHA has replaced the CAF – Common Assessment Framework.

However EHA principles remain the same:

  •  consent based process
  •  assessment should be completed with the child/family
  •  should be used as an assessment of strengths and needs
  •  a support plan should be developed with the family and all agencies involved and regularly reviewed

It is a holistic approach which looks at the whole family and should clearly detail all aspects of what is working well, what is not working well and what needs to happen. An EHA facilitates discussion between professionals from different sectors and organisations who are working with the same child or family so that they communicate and work together more effectively.  Setting up an EHA for a child or young person with a spinal cord injury can be a good way to coordinate the work of the large number of professionals now working with that child or young person.

The EHA is set up with the consent of the family and child or young person, who are all active participants in the process.  It supports partnership with families, involvement of the child or young person and a systematic, integrated way of services working together for the benefit of the child.  One professional becomes the ‘lead professional’ and initiates meetings and communication for the group. An EHA can be set up a for a limited time and closed when it is seen to be no longer necessary and the child’s needs have been sufficiently met.

To learn how to set up an EHA, contact your local council or Children’s Services department.

Information and supporting tools on setting up and facilitating a EHA (from different local council web sites):

For best practice in education settings:

This organisation offers useful downloads and example Early Help Assessment forms:

Education Health Care Plans or EHCPs

The process of applying for an Education Health Care Plan should start as soon as possible.

A lead professional such as SENCO or parent can request an Education Health Care assessment from their Local Authority. This EHCP will then coordinate support across health, education and social services for that child and according to the plan. The general process of applying for an EHCP requires an assessment at local authority level, with the help and involvement of specialists such as nurses, physios, OTs and educational psychologists. More detailed support and information on EHCPs can be found in section 2c.

Resources:

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

·         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

·         ASPIRE:  national charity working with people with spinal cord injuries

·         Alliance for Inclusive Education (ALLFIE):  organisation that supports schools and families work towards inclusive education

Early Help Assessment:

·         Doncaster Council

Education Health Care Plans and spinal cord injury

When a child or young person attends nursery, school, college or university it is vital that they have the proper support in place to access their education and be fully included in all aspects of their education. An Education Health Care Plan brings educational and health needs together in one legally binding document.

This section includes:

  • EHCP and Education Q&A
  • Our Top Tips for Education Health Care Plans
  • Examples of SCI Needs and Support for EHCP Section B & F

At Back Up we have had an increase in the number of parents, schools and health professionals contacting us to request support around applications for Education Health Care Needs Assessments and Plans.

Many of the queries we are receiving are specifically around spinal cord injury and what to include in an EHCP. To make information more easily accessible we have worked with education solicitors to create this guide on EHCPs that is specific for children and young people with spinal cord injury.

*Please note that although we can support with EHCPs, we are not legal specialists. An Education Health Care Plan is a legal document and if you need further help and support we would advise and encourage you to contact organisations who specialise in EHCPs such as IPSEA. A comprehensive list of organisations can be found at the end of this section or Click here. *

EHCP and Education Q&A

What is an EHCP?

An Education, Health and Care Plan (‘EHCP’) is a legal document that outlines your child’s special educational needs, the additional support they will receive in school/college to meet those needs and the placement they will attend. It also outlines your child’s health and social care needs, but children/young people must have a ‘special educational need’ to have an EHCP.

It is a 2 step process:

  1. Apply for an Education Health Care Needs Assessment (EHCN) – this can be refused or approved.
  2. If the EHCN assessment is approved  – the next part of the process is assessments for a EHC plan to be created.
  3. Using assessments and reports from health and education professionals an Education Health Care plan will be drawn up. This plan can also be refused or approved.
  4. Once approved this is legal document and any support and provision agreed and stated in the plan must be delivered by the local authority and school.

The process of applying for an EHCP should take no more than 20 weeks from application, this can often feel a long and drawn out process but is valuable because, as a legal document, it helps ensure the child will get the support they need.  While most of the process is led by the school and LA, parents can also request to start the EHCP process or appeal if the EHCP is refused.  People who can help in the process include SENDIASS at the local authority who should give free and impartial advice.

Who is responsible for applying for an EHCP?

The first stage of applying for an EHCP is to apply for an EHC Needs Assessment. There is a number of people who can apply for an EHC Needs Assessment. This is the first stage of a two stage process to have an EHCP issued. A parent/carer, young person (if they are aged 16 -25), school/college all have the right to make a request for an EHC Needs Assessment. In addition, anybody else can make the request, preferably with the agreement of the parent/carer. This can include an advocate, solicitor, medical professional or social services.

Who can help me to apply for an EHC Needs Assessment?

Your child’s school/college may be able to help you, and they can make the request directly, preferably with your permission. If the school/college is unable or unwilling to assist then you can get additional help from a legal advice giving charity, advocate or solicitor. The charity, Ipsea [insert website link www.ipsea.or.guk] has a model request letter that you can download and fill in.

Can I apply for an EHCP if my child has a spinal cord injury?

Yes, you can request an EHC Needs Assessment. Any child or young person who has a learning difficulty or disability may require an EHCP. There is no set list of diagnoses that children have to have in order to qualify for an EHCP. Instead, it is about how your child’s needs and injury impact on them being able to access and participate in education. This is not just limited to physical needs, for example some children will also have associated mental health difficulties.

My child has a spinal cord injury but can walk with crutches, can we apply for an EHCP?

Yes, absolutely. It is not just about their physical needs associated with their spinal cord injury, it is about them as a whole and whether or not they have special educational needs and may require additional support through an EHCP.

My child has had a spinal cord injury for a very long time, can we apply for an EHCP?

Yes, the length of time your child has had a spinal cord injury for is not taken into account. There are young people who left education at 16 years, who may be 20 years old now and want to return to college. They can ask for an EHC Needs Assessment.

Do I need to get medical reports?

When making your EHC Needs Assessment request it is advisable for you to provide as detailed a description, as you can, of your child’s special educational needs. In addition to your description it is helpful to provide copies of reports that you have received from medical professionals, details from your child’s school/college and any other relevant documents you have. While it is not compulsory to provide this information it will help to support your case, and explain to the Local Authority the impact that your child’s spinal cord injury has on them receiving and participating in education. This does not just include the physical aspects of their needs.

The school/local authority has said my child doesn’t need an EHCP because he just has a physical disability and doesn’t have learning difficulties. Is this correct?

The legal test for whether a child/young person needs an EHC Needs Assessment is found at Section 36(8) Children and Families Act 2014. It tells us that the Local Authority must carry out an EHC Needs Assessment for the child/young person, if they are of the opinion that :

a) The child or young person has, or have special educational needs, and
b) It may be necessary for special educational provision to be made for the child/young person with an EHC plan

Section 20 Children and Families Act states that:

“(1) A child or young person has special educational needs if he or she has a learning difficulty or disability which calls for special educational provision to be made for him or her. (2) A child of compulsory school age or a young person has a learning difficulty or disability if he or she— (a)has a significantly greater difficulty in learning than the majority of others of the same age, or (b)has a disability which prevents or hinders him or her from making use of facilities of a kind generally provided for others of the same age in mainstream schools or mainstream post-16 institutions”.

As you can see from this the legal test confirms that it is not only children who have a learning difficulty, those with physical disabilities are also covered by the legislation.

Can my child go back to the school they attended before their spinal cord injury?

It all depends on whether that school remains a ‘suitable’ place for them. It is entirely possible for children to go back to the same school they attended before their spinal cord injury, but there may be some reasonable adjustments school will need to make.

My child’s place of education is not accessible and they are due to return to school after their SCI, what should the school be doing?

Schools have a legal duty to make ‘reasonable adjustments’ under the Equality Act 2010. This means places of education need ‘to take such steps as it is reasonable to have to take to avoid the substantial disadvantage’ to a disabled person caused by a provision, criterion or practice applied by or on behalf of a school, or by the absence of an auxiliary aid or service.

This duty is anticipatory, which means that school has to think and act on it before your child is at a substantial disadvantage. This means that any work needs to be done before your child is due to return to school. Having a meeting with school to discuss this would be a good idea.
There are some schools that by the nature of the building will not be able to make the required adjustments to enable your child to attend, and therefore in some cases it may be necessary for your child to move to an alternative school.

They have refused to assess my child for an EHCP? What can I do?

If the Local Authority refuses an EHC needs assessment for your child then they must give you a right of appeal against this decision, and notify you about the option to go through mediation.

Whilst there is an option to enter into mediation with the Local Authority, it is not a legal requirement. The requirement is simply for you to consider whether or not mediation may be suitable, speak to the mediation provider and obtain an information certificate if you do not wish to proceed.

To make an appeal to the Special Educational Needs and Disability Tribunal you will need to lodge your paperwork either within 2 months of the date of the decision letter from your Local Authority refusing the EHC needs assessment, or within 30 days of your mediation certificate, whichever is later.

In order to successfully appeal you will have to demonstrate to the Tribunal, as far as you can, that your child meets the legal criteria for an EHC needs assessment:

a) The child or young person has, or have special educational needs, and
b) It may be necessary for special educational provision to be made for the child/young person with an EHC plan
It is important to note that all appeals against refusal to carry out EHC needs assessments are paper only hearings, not oral hearings.

What does an Education Health Care Plan look like?

There is no template for EHCPs so it will potentially look different for every child. It must, however, have the following sections:

• Section A: Parent/carer and child/young person views and aspirations
• Section B: Your child’s special educational needs
• Section C: Your child’s health needs, that are related to their special educational needs
• Section D: Your child’s social care needs
• Section E: Outcomes – what your child is working towards achieving
• Section F: Special Educational Provision (to meet the needs described in Section B)
• Section G: Health Care Provision
• Section H: Social Care Provision
• Section I: Placement your child is to attend
• Section J: Personal Budget, if you have opted for one
• Section K: Appendices – the advice and information that was gathered during the Education, Health and Care Needs assessment and annual reviews of the EHCP

The LA are not gathering the right information about my child and the EHCP plan is not very detailed. What can I do?

If you have received a final EHCP then you will have a right of appeal to the Special Educational Needs and Disability Tribunal, and to consider mediation. This is likely going to be the best way to get improvements made to your child’s EHCP.

An EHCP has been approved how often should it be reviewed?

Once an EHCP is issued it must be reviewed, at least every 12 months. For children under 5 years old the Local Authority should consider reviewing the EHCP at least every 3 to 6 months.
Paragraph 9.166 SEND Code of Practice states that:
“Reviews must focus on the child or young person’s progress towards achieving the outcomes specified in the EHC plan. The review must also consider whether these outcomes and supporting targets remain appropriate”.

Therapies in School: My child needs to do physio during school time should this go in his EHCP?

Yes, any therapy provision your child needs must be written into their EHCP and it is important for it to be detailed in the correct section of the EHCP. It is also extremely important that the therapy is ‘specified and quantified’ appropriately, so you can be sure your child will receive the right level of therapy.

Any provision that “educates or trains” your child needs to be written in Section F of their plan, as special educational provision. It is about the difference the provision makes to your child, and not which department funds it that dictates which is the correct section. Typically physiotherapy may be provided by the NHS, but usually this does not make it health care provision under Section G. Instead you need to look at what physiotherapy is doing for your child, and if it is ‘educating or training them’ then it must be contained within Section F, not G.

My child has experienced a life changing SCI and might need some support with mental health at school should this go in an EHCP?

Yes, support around mental health can and should be written into your child’s EHCP.

Any provision that “educates or trains” your child needs to be written in Section F of their plan, as special educational provision. It is about the difference the provision makes to your child, and not which department funds it that dictates which is the correct section. Typically mental health support may be provided by the CAMHS, but usually this does not make it health care provision under Section G. Instead you need to look at what that therapy support is doing for your child, and if it is ‘educating or training them’ then it must be contained within Section F, not G.

My child needs the support of a TA to go the toilet, with their catheter and help with dressing for PE – does this go in an EHCP? If so which section should this go in?

Support from a TA/LSA needs to be written into your child’s EHCP, including the amount of hours required, any training/expertise that TA/LSA needs to have and whether there support is required during lunch/break times as well or just during class time. Any additional support required with toileting and dressing for PE can be included within this TA/LSA provision in Section F.
There may also be a health plan, under the school’s Medical Policy for specific support and provision around a child’s catheter, and there may also be additional provision under Section G, health care provision for this need.

Our Top Tips for Education Health Care Needs Assessments & Plans

Every EHCP assessment request form across the UK is unique to your Local Authority.

EHCPs form legally must all have the same sections across the UK, but there is not set format and the layout will be different depending on your local authority.

Some people find that EHCP forms are vague, the space to write seems small and not sure what to include.

  • Include a photo of your child to make it more personal
  • Include your child’s voice, such a letter from them
  • You cannot write too much. Include everything you can think of, the spaces to write sometimes appear limited – but you can use continuation sheets
  • Be clear and specific especially around what support is needed. Leave no room for interpretation for example ‘this would be helpful’ – LA’s can get around wording like this. Be specific regarding number of hours of support for example 3 hours 1:1 physio twice a week etc
  • Word’s like ‘might’ and ‘would’, need to be ‘must’ and ‘should’
  • Start gathering evidence from medical professionals as soon as possible. The LA have a duty to gather evidence but it is best to get all the evidence you can
  • Keep copies of everything
  • Record dates of when you submitted forms and documents – there is an EHCP timeline that LAs should stick too and there are also strict timelines for you to reply to things and if you wish to appeal
  • Remember ‘A well managed need is still a need’ – ensure all needs are stated
  • Worst day/ worst case scenario – Although this may be uncomfortable and difficult to discuss we encourage people to consider looking at what support a child or young person may need on their worst day/ worst case scenario.  Having this conversation can be tricky as it will involve discussing all the things someone cannot do independently, however in order to get the right support it is vital
  • If there is a Need stated in section B- it should have a provision in Section F. A good way to think of it is “If you have a need in B, it needs a friend in F”

Examples of SCI Needs and Support

EHCP Sections B & F

We have created this list to support children and young people with SCI when they apply for an EHCP.

Part of the EHCP process is to state needs and what support is needed. There are very specific needs and support required for spinal cord injury. These are some you may wish to consider to be included in an Education Health Care Plan.

*Please note this is not an exhaustive list and some may not apply, or there may be additional needs not stated in this list. Needs and support are dependent on the individual; the level of injury and age of the child or young person need to be taken into consideration. All needs must be carefully considered and personalised to the individual child or young person. Fully supported and in agreement with parent/guardian, the young person and any other supporting professionals such as medical etc

Section B – Need

Section F – Provision

What needs to be put in place to support the Need in Section B

Notes

Access classroom

Adjustable desk
Space to move around classroom furniture Ramps
IT software such as Eyegaze, Dragon etc
OT equipment splints
Teaching Assistant Scribe
Differentiated learning
Aspire may be able to assist with advice on IT equipment

Access playground

Accessible and inclusive play equipment
Teaching Assistant Support Inclusion
Seek advice from OT and play therapists

Access sports & PE

Staff training
Accessible transport
Accessible swimming pools and sports facilities
Free wheel, plinth for changing, hoists.
PE equipment, differentiated learning
STEP strategy

Administering Medication

Medical plan/policy
Accurate Record keeping
Trained member of staff
Safe but accessible place for medicine

Any other Additional Needs

Many children and young people also have other needs alongside needs around SCI.These can include learning needs,and  other medical conditions.
It is important that these needs are also included in an EHCP and follow same format – state the Need in Section B and the support needed in section F

Assistance with dressing/ changing for PE

Staff trained manual handling
Teaching Assistant
Accessible changing room
Accessible shower
Shower seat
Plinth
Hoist
Equipment
Place to keep spare clothing
Dignity

Autonomic Dysreflexia

AD training for all staff involved with student.
Understanding of unique signs to the individual
Medication held in secure accessible place
Emergency Procedures/ plan in place for individual student
Teaching Assistant to administer medication
Potentially training several members of staff in case off sick
Autonomic dysreflexia is a very raised blood pressure, usually with a headache and sometimes a skin rash. Emergency.
Such things as a very full bladder, bowel problems and skin sores can cause the condition.

Blood pressure

Monitoring equipment and accurate record keeping

Difficulty breathing, coughing or clearing secretions from lungs

Breathing function may be affected due to weakness of the chest and abdominal muscles. They may be more at risk if they have a cold or other infection.
Staff fully trained
Cough assist machine

Fatigue

Time out place
Adjustments in lessons for concentration, short tasks
Adequate breaks
Personalised timetable
Exam considerations

Headaches

Medication
Quiet safe space for student to go to for time out
Plan in place around severe pain
Can be affected by SCI/brain injury/condition/medication/blood pressure/pain & fatigue
For some this can be a sign of AD

Lack of sensation

Manual Handling training
Pressure Relief to avoid pressure sores Minimise risk of injury through risk assessment and safe environment

Maintenance of Wheelchair Equipment/ Walking Aids

Secure safe place for
Powerchair charger
Puncture Repair Kit
Ensuring certain staff can fix a puncture and naming who they are for awareness

Medical equipment

A safe secure place for medication and medical equipment. Member of staff trained

Memory & concentration

Short tasks
Differentiated learning
Personalised timetables
Quiet place to study
Teaching Assistant
Can be affected by SCI/brain injury/condition/medication/blood pressure/pain & fatigue

Mental Health needs

Mental Health Support & Therapies can  be included under SEN section B & F
Incorporated within school time to minimise absence
Differentiated learning
Safe space to go to for time out
Confidentiality

Mobility

Safe access
Consider distance between classrooms
Accessible doors
Environment
Fire safety etc
Ramps
Lift
Teaching Assistant Staff trained on Fire Evacuation safety
Also note crutches/ mobility aids and uneven surfaces

Nausea & dizziness

Training staff on how best to support with this
Allowing food/drink in class if this alleviates it

Nutrition/Dietary needs

Fridge for specialist foods
Personal cutlery  see also OT)
Dining table access with peers
Assistance carrying food to table
Assistance eating

Occupational Therapy

Equipment Assessment for all lessons as needed–
Writing tools
Laptop
Art materials
PE
Food Tech Sciences
Maths
Woodwork
Technologies
Music
IT

Pain or an intense stinging sensation caused by damage to the nerve fibres in your spinal cord

Staff training and understanding of impact of pain, management, strategies/techniques and medication individual to student.
Teaching Assistant support
Safe space for student to go to for time out.
Plan in place around severe pain
Can manifest in a number of ways unique to individual such as spasms

Personal Care – Bladder Care

Awareness of individual routines
Teachers understand and should not put barriers up
Dignity
Offer methods that avoid causing any distress for the child i.e. using a colour card to be excused without explanation and/or easy way of contacting teaching assistant such as bleeper if not with child all the time Exam considerations – supervised rest breaks
Template for bladder and bowel care 

Personal Care – Bowel Care

Awareness of individual routines
Teachers understand and should not delay students or put barriers up or make an issue- for example leaving a lesson discreetly or however the student wants to do this
Dignity
Offer methods that avoid causing any distress for the child i.e. using a colour card to be excused without explanation and/or easy way of contacting teaching assistant such as bleeper if not with child all the time
Exam considerations – supervised rest breaks
Template for bladder and bowel care 

Personal care -Toileting/intimate care

Teaching Assistant fully trained
Specialist equipment to allow for independent and/or assisted transfer
Plinths
Emergency pull cord in bathrooms
Hygiene Bins suitable for disposing of medical waste
Continence plans
Confidentiality and dignity at all times
Secure place to store intimate care products and equipment
Staff not sharing bathrooms with students
Allowing easy access to accessible toilets i.e. not locking them
Accessible fully equipped changing area in case individual needs to change clothing
Exam considerations – consider supervised breaks, where the clock stops while student has a break and then restarts.
This could include assistance with different types of catheters, emptying leg bags, bowel movements, accidental incontinence etc, assistance with intimate care such as menstruation or simply support for an individual to access the toilet such as transferring onto a toilet seat. Template for bladder and bowel care 

Physical aids for legs/ back/ hands etc

Splints/braces – care around these

Physio to support mobility, muscle tone etc

Area for physio to take place to avoid absence from school
Physio incorporated into PE
Physio plan
Specific hours and times need to be stated

Poikilothermia

Keeping classrooms, changing rooms etc a good temperature
Awareness of moving around the school and time spent outside playtime etc
Flexibility with uniform such as adding layers or lighter clothing option eg. removal of blazer in hot weather etc
Flexible during breaktimes i.e. if it’s freezing outside, allowing a child and a few friends a room to use to avoid getting too cold, or allowing a fan in a classroom
Inability to regulate temperature – can easily become cold or over heated

Pressure Relief to minimise risk of pressure sores

Staff training on correct manual handling to avoid compromising skin
Pressure Relief routine set with individualDignity
Skin tissue is more easily compromised and can break down quicker with spinal cord injury Lack of sensation

Trips

Anticipatory duty’ advance planning and considerations needed
Student/parent/ guardian involved in planning
Accessible: Accommodation Activities
Transport
Inclusion in all of these aspects with peers is key
Teaching Assistant
Overnight care
Equipment Medical information at hand

Social needs

Inclusive ethos across whole education experience
Lunch and break times with peers
Sitting with peers in class
After school clubs
Teaching Assistant support may be needed but awareness and understanding of giving child/ YP space and freedom

Spasms & Exaggerated reflex actions

A spasm may involve only one muscle or be more generalised and may be very short lived or last a long time.
Full understanding and training of the indivuduals physical and medical treatments for them.

Speech Language Therapy

Assistive Technology may be needed
Teaching assistant support
Therapy sessions

Transport to school/school trips

Accessible transport arranged
Included with peers, not separated
Teaching Assistant

Travelling around the school

Arrangements to leave class a bit earlier
A Teaching Assistant to support
A locker for school books or designated safe place
Consider distance between classrooms Consider electric doors or easy to open to allow independence

Ventilation

Fully trained staff – often need more than 1 assistant. 1 focused on ventilation and edical needs and another for secondary support plus support with education. Both of these support staff should still go under SEP – special educational provision as both support with access to education
Support from community nurses

 

Support plans, such as an EHCP, are called different names in different parts of the UK:

Scotland use a Coordinated Support Plan (CSP) to outline the additional support children and young people should get from schools.  A CSP acts much like an EHCP as it is legally binding but it also serves the purpose of bringing together professionals from health, education and social care teams.  For more information on the CSP process, see:

In Northern Ireland they also carry out assessments in a similar way with a coordinated approach but these are called Statement of Special Educational Needs

In Wales, they will shortly transition from SEN support plans to a plan called an IDP – an Individual Development Plan and they call SEN – Additional Learning Needs – ALN. All children considered to have Additional Learning Needs will have an IDP. This process will begin from 2020.

‘ALN (Additional Learning Needs) Transformation Programme’ which it is said will ‘transform the separate systems for special educational needs (SEN) in schools and learning difficulties and/or disabilities (LDD) in further education, to create a unified system for supporting learners from 0 to 25 with ALN…The ALN Transformation Programme also focuses on skills development for the education workforce, to deliver effective support to learners with ALN in the classroom, as well as easier access to specialist support, information and advice. “

Current information on SEN statements in Wales

To know more about the transition to ALN in your area please contact your local authority.

How the ALN Act will affect children, young people, parents and carers.

How the ALN Act will affect maintained schools and nurseries.

Additional Learning Needs and Education Tribunal (Wales) Act

For more information on EHCPs please see

IPSEA – Independent Provider of Special Education Advice (known as IPSEA)

Skybadger – £HCP help for disabled children and their families

Providing continuity while in hospital

Providing continuity for children and young people while they are in hospital is a key factor in successful re-inclusion in school following a spinal cord injury. Early contact between hospital and school is very important, this should include when the hospital hopes the child or young person can return.

Ideas and strategies for providing continuity of support

Visits and contact in hospital

1. Children and young people with spinal cord injuries have described how important it is to have contact from schools and classmates when they are in hospital. Visits from teachers or school friends when in hospital can create a link between a sudden injury and a new identity with their previous school life as a non-disabled person. Small groups are best and check with the hospital, child and family first.

2. School staff and teachers can liaise with hospital teaching staff in order to help the child or young person keep up to date with the curriculum and aligned with what other children are doing. Involving parents in this communication as well has also been shown to be helpful for families and children.

3. Cards, letters, or multimedia communication like a video message or photo journal from other students, the whole class or school are appreciated – and ideally at regular intervals.

4. Use Skype or email to link the children and young people with their peers and to keep them involved in school activities.

5. Keep in contact with the family, sending school newsletters or information on school activities.

6. Recognise that siblings may be anxious about their brother or sister and are also going through big adjustments. Check in with them to see if they need any further support.

In an Institute of Education report on school lives of children and young people with spinal cord injury, one young girl described how her class had continued calling out her name in the register and how some of her classmates pretended to answer questions for her in class. Gestures such as these served to show the children and young people that they were still being cared for by their school and not forgotten.

Before your student returns to school

1. Ensure that the student is involved and consents to how their situation is described and discussed with staff and other students. Any preparatory work with staff and students should be communicated to the child or young person so they are aware of what the school community has been told before they go back to school.

“My advice 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, aged 17

2. Communicate with the whole staff about the situation and return of the student. This preparatory work may not need to go into great detail about the spinal cord injury but could discuss how the student will get around, what requirements they may have or equipment they might use. It is important to emphasise that they remain the same person and should be accepted as such.

“The wheelchair and the fact that they can’t move their legs is not their biggest problem….it’s social acceptance and being seen as a person and not as a person in a wheelchair.” Head Teacher, Primary School*

3. Resourcing adjustments, such as physical adaptations to the school, before the student returns can enable a smooth transition. See f) ‘Preparing the School’ for more information on this.

4. Begin raising awareness through talking to students and peers about disability. This can link with the PSHE programme. Assemblies are a good tool to raise awareness. However it is good to not draw too much attention to the child or young person. Other people who are wheelchair users discussing their own lives, can answer from first-hand experiences.

One primary school Head Teacher spoke to all the children personally about wheelchair use and had read a ‘Topsy and Tim’ book about a girl in a wheelchair to each class before Elizabeth started at the school. Although Elizabeth was starting at primary school rather than returning after being in hospital, the Head Teacher prepared the school for Elizabeth’s arrival, and this was highly valued by her family, who saw this as very helpful for the transition to primary school.*

Reference:
* 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.

Preparing and welcoming the student

Returning to school after facing any trauma can be difficult. For children and young people who have experienced a spinal cord injury, re-integrating can be particularly difficult. They will likely be dealing with significant physical, emotional, and familial changes outside the school. Facing their peers and their previous educational experience as a non-disabled student can be extremely challenging. A positive, warm, sensitive and hopeful welcome can make a huge difference to how successfully that child or young person re-enters the school community.

“When I went back to school I was nervous because I didn’t know how people would react to me being in a wheelchair. It was bad because of the anxiety, and the depression I got. It was just so bad, 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.” Ben, 17

Children and young people with spinal cord injuries have said they cope much better with returning school if they are properly prepared.

“Make sure everything’s in place before the young person returns, and make sure the school fully understands about having a student there with a spinal cord injury.” Ben, 17

Proper preparation and support of young people before returning has also been connected with students being able to attend school full-time immediately rather that a gradual part-time entry. Preparations they identified as being useful included:

1. Visiting the school before returning – possibly with a parent or an occupational therapist. The visits re-establish relationships with staff and students and allow the student to practice moving around the school and using new equipment as required.

2. Attending a meeting at the school with professionals and their parents – Meetings could involve hospital-based professionals, parents, school staff and the child/young person. The meeting could cover the child’s requirements, school responses to those requirements and an assessment of the physical environment. Importantly, these meetings should involve the child and consider their ideas and perspectives on their needs and how to address them. See  ‘knowing who to involve’ for more information

3. Remember children and young people who have a spinal cord injury may be reluctant to return to school or engage with anything that reminds them of their disability. Offering emotional or psychological support, as well as being sensitive to their situation, are some strategies to address this. See section 3 d) ‘different areas of support’ for more information

“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

A 2008 study by the Institute of Education explored the school lives of children and young people with a spinal cord injury. Most students in the study obtained their injury in childhood or adolescence, meaning they had to return to the school they had previously attended. For many, ‘this was a difficult and sometimes traumatic event.’ One student in the study returned to school just before his GCSE’s and felt ‘uncomfortable’, ‘out of place’ and like ‘everyone was watching him’.

  • Many found the return to school full of mixed emotions. While it was good to see friends again, ‘at the same time it was a difficult transition’.
  • Students felt different and reported seeing their classmates as different too.
  • They reported feeling nervous about how to handle their bodies.
  • Students also reported that they did not want to be treated differently just because they had been spinally injured. However, some felt that attitudes towards them had changed.

“It was a bit weird. A lot of the class, I didn’t even recognise them. Their personalities had changed and they were different” Tim, 10

“It was really good at first, although I was a bit shaken and a bit nervous at first about going in; I hadn’t yet got used to how to handle my body and that” Ian, 16

“Strange and then happy. At first they treated me a bit differently but I said to them just treat me as normal. They kept asking ‘do you need this, do you need that?’ but I said, ‘no, I can do it myself’.” Janine, 17

“I remember the dinner lady – before she was always having a go at me and then when I came back in a wheelchair she was all sorry for me, which I don’t want, some people are like that…..I don’t want to be treated differently from other people.” Ali, 15

Strategies that can help welcoming the student back to school

1. Visits from teachers or friends can make it easier to cope with returning to school. See section c) for more strategies on keeping in touch with students in hospital.

2. Discuss with the child or young person what kind of welcome they would like, if any. Some may want a formal assembly where they (or someone they choose) can provide information about what happened to them and what adjustments need to be made for them. Others may prefer the school community is informed but just want a small Q&A session with friends to discuss what happened. Some may not want any recognition of their experience. The most important thing is that they are comfortable and involved at how they are welcomed back to school.

3. Consider a buddy system and pair up the child or young person with a friend or another student of their choice who can accompany them back to school on the first day and who understands the issues and what adjustments they need.

4. Ensure all school staff are aware of the return of the student and how to welcome them sensitively and in a non-patronising way. It is also important that all staff are trained in recognising relevant medical issues, such as autonomic dysreflexia. For more information on this, see section c)

5. Promote and display positive role models and ideas of disability within the school. Make sure this is done in a sensitive way that illustrates the successful, varied, fulfilling and ordinary lives that disabled people have.*

Resources to link to or include:

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

*Taken from:
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

Preparing the school community

Preparing all those in the school community about having a student with a spinal cord injury is vital. This section gives ideas and strategies on how to do this by covering:

  • Whole school
  • Before yours student returns to school
  • Staff
  • Students and peers
  • Preparing the child or young person
  • Resources

Preparing all those in the school community – staff, students, the child or young person with a spinal cord injury and their families – is vital. The child and family’s life has changed profoundly and the school community will need to adjust to welcome them with sensitivity and warmth. How this is done depends on the school, its culture and, most importantly, the involvement of the child and their family.

Back Up understands that a spinal cord injury can be devastating, but we believe it should not prevent anyone from getting the most out of life. Research and those in the field supports this point of view:

“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 injury have long-term psychological trauma and difficulty. It’s more normal to cope and make adjustments.”

Zoe Chevalier, Clinical Psychologist, Stoke Mandeville SCI Unit

When preparing the school community for welcoming a child or young person with a spinal cord injury, a realistic recognition of the changes they’ve undergone should be balanced with a message of positivity and examples of others who have coped in similar situations. This must, of course, be handled sensitively as the child or young person may not be immediately ready to openly discuss these issues but a message of hope and optimism is an important one for the community to have at its heart.

Whole school

Developing an inclusive school culture at a whole-school level is vitally important – not only for the child or young person with a spinal cord injury but for all students in the community. The expectation should be that the student will be included in all aspects of school life. The question is how to make that happen. School culture and attitudes are paramount at seeing this expectation made real.

“If the whole school ethos is about meeting emotional and social needs then it doesn’t matter so much about where your legs are” (Head Teacher, Primary School)*

Top tips for schools

1. Ensure that the student is involved and consents to how their situation is described and discussed with staff and other students. Any preparatory work with staff and students should be communicated to the child or young person so they are aware of what the school community has been told before they go back to school.

2. Linking with schools which have already gone through a process of inclusion can be really vital. Back Up’s schools and family inclusion service can facilitate this link.

3. Link in with school/authority based inclusion personnel to feed into already established strategies and processes, is key, for maximum impact. Advisory support teachers are good places to start.

4. Include issues of diversity, equality and inclusion into the curriculum, school events and displays. Promoting positive images of disability and diversity within the school.

5. Involve an adult with a spinal cord injury, preferably at a similar injury level to the young person being included. Back Up can arrange for a spinal cord injured Education Advocate to visit the young person and the school. We can also provide peer mentoring for longer term support.

6. Access disability equality training and support – for teachers, support staff and all people who work in schools.

Staff

“ My advice 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, aged 17

Depending on when they were originally trained and their previous experience, teachers and staff may have a huge variation in knowledge and skills related to inclusion of children with different requirements.

Staff may need training and information around the health requirements of children and young people with SCI who are returning to school. Liaising with health care professionals to provide training on specific issues (e.g. tracheotomy use) may help staff feel more confident and know what to expect.

Training that may be useful or appropriate for staff include:
• disability equality
• wheelchair training so staff know what is safe and unsafe
• manual handling
• possible medical issues that arise
• working with PA’s
• adapting curriculum and teaching strategies

While children and young people with spinal cord injuries are not necessarily any more prone to medical emergencies than their peers, there are some related medical issues that all school staff should know about. See a) Knowing what to expect for further information.

Students and peers

Recognise the importance of friendships and social acceptance in the child’s inclusion into school. Other children and young people with spinal cord injuries have reported how having close friends or support to re-establish friendships aided them in returning to school.

“I was really shy to talk to everyone….but people encouraged me to make friends” David, age 13*

Advice

1. How you prepare other students at the school may depend on a number of factors and should be done in collaboration with the child or young person returning to school and their family. Some may prefer to have a full school assembly while others may wish to meet with a small group of friends or work with small groups.

2. Talking sensitively to the friends or year groups of the returning pupil can help prepare students for what to expect and avoid awkward situations.

3. Other organisations can help plan and facilitate a student’s return to school. Contact Back Up’s Education Inclusion service on 020 8875 1805 or the medical team at the spinal injury centre, to find out how they can help.

Resources

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

*Taken from:

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.

Preparing the school: physical, practical, policy and resource issues

To simplify the types of changes that may need to be made to a school, we have put them into three categories:

  1. Physical environment

  2. Practices

  3. Policies

A section at the end will look at how to help resource these changes.

It is important to remember that inclusion of a child with a spinal cord injury into a school environment is very possible and usually leads to outcomes that benefit all in the school community.  Of course, there are a number of factors to consider when a student returns to school with a spinal cord injury.  The most obvious is the physical adaptations that may need to be made to a school, but the practices, policies and school resourcing also need to be re-assessed.

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

SENCo, Gloucestershire

The changes that need to be made to the school environment and culture can be valuable to the school community as a whole. Preparing the school to be more inclusive, both in terms of physical changes and policy adjustments can have longer-term benefits beyond the positive experience of just one student. It is also best to discuss and anticipate these adjustments preemptively rather than reactively.

Suggestions for making preparations

1.    Use the Index for Inclusion, a resource for helping the inclusive development of schools to make them better places for all students.

2.    Use the Equality Act 2010 to publish compliance on the Equality Act to facilitate and frame these discussions. For more information see The Equality Act 2010 and schools, which helps schools to understand how the Equality Act affects them and how to fulfill their duties under the act.

3. Create and regularly update an Accessibility Plan (statutory duty for all schools) that considers changes that may be required for students and staff with different impairments. Changes should include physical adaptations and consideration on how the curriculum and delivery of information can be made accessible for all students. Here is an example of a comprehensive Accessibility plan Paddock Wood Primary School

4. Create and regularly update a Supporting students with Medical Conditions Policy (statutory duty for all schools) Paddock Wood Medical Conditions Policy example

For more advice and useful templates please all visit the Health Conditions in Schools Alliance website

5. Make the necessary preparations for a student’s inclusion in a timely manner so there aren’t delays in their return.  Using shared job descriptions or checklists of things to put in place can help prevent delays.

“All schools should have an Accessibility Plan setting out how they are going to improve the physical environment of the school to accommodate disabled pupils, increase the extent to which disabled pupils can participate in the school curriculum and improve their delivery of information to disabled children. Funds are available from local authorities to enable this process.”

Angela Gall, Consultant London Spinal Cord Injury Centre, Stanmore

1. Physical environment

A 2008 study on the school experiences of children and young people with spinal cord injuries showed that nearly all who participated in the study had ‘experienced problems, to some degree, accessing the school’s physical environment.’*  Some of the most common problems reported were with:

  • Heavy doors
  • Ramps that were too steep (especially with heavy book bags on the back of their chairs)
  • Classrooms that were difficult to access (meaning wheelchair users were sometimes isolated from the other students in another part of the school)
  • Narrow halls or small classrooms (where students get bumped on the head or cannot manoeuvre)

When a child or young person has a spinal cord injury, an occupational therapist will often visit the school to discuss what requirements they have and what adaptations would be helpful or necessary.  This would ideally also include a meeting or conversations with the child and young person so they can input on what they need and require.  It is also important to understand that the requirements may change as the child or young person becomes more comfortable using equipment like wheelchairs or begins to better understand what would help them become more autonomous.  Some changes that need to be made are likely to be small and not costly.

A speedy preparation is ideal but it can take a lot of time for adaptations if significant changes need to be made.  It is not particularly welcoming for a student if their return is delayed because of building work being done, so ensuring physical accessibility pre-emptively is preferred where possible.

Changes to the physical environment to be considered and discussed with the child, young person, family, and occupational therapist include:

1.    Temperature control:  Children with spinal cord injury above T8 have difficulty regulating body temperature and are susceptible to overheating in hot environments and hypothermia in cold environments. Attention to environmental temperature is therefore important.

2.    Lifts:  Ensure students have access to lifts at any time, ideally with use of their own key.

3.    Parking:  Ensure there is sufficient disabled parking and that any policies related to pick up and drop off do not exclude children or young people with spinal cord injuries.

4. Separate units:  Some schools create separate units or areas for students with additional needs to use for quiet study or to work with a learning assistant. These are called different things – special units, safe zones, quiet area – but can be havens for students feeling overwhelmed or lacking confidence.  However use of these areas should be the choice of the student, rather than becoming the place they work when they can’t be included in activities that other students are enjoying.

5. Specialist equipment:  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, adapted shower and toileting chairs, or adapted support for eating and drinking.

6.   Assistive computer technology:  Relevant assistive technology related to using computers includes the following:

  • different sizes of keyboards (larger or smaller)
  • 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 (for example dragon software)

The types of assistive technology that a child or young person requires very much depends on their spinal cord injury.  Children or young people may get support during their rehabilitation in hospital or spinal centres in using technology.  Advisory teachers for children with physical and neurological needs are a good point of contact as well as organisations and programmes such as ASPIRE grants programme,  ASPIRE assistive technology assessments, and AbilityNet that can help with assessment, funding or information about different types of assistive technology.

7.    Toilet / health care room / medical room:

Inadequate or inaccessible toilet facilities at school are a common experience of children and young people with spinal cord injuries.  Toilets have been reported as too small, used for storage of other things or free for anyone to use and therefore always occupied.  Students should ideally be given a radar key to use to open the toilet as necessary.  One school adapted a toilet for a child with a spinal cord injury, which included a toilet, bed, hoist, shower and shower chair.  This meant if the child had an accident they could be supported to clean themselves up at the school in privacy.

“Toilets were a key area where the school could have done more. There wasn’t anywhere to store or dispose of his catheters and his medication. The disabled toilet was used by other people including teachers who sometimes used it to get changed in, it could also be unlocked from the outside so he didn’t feel comfortable using it. The situation caused him lots of embarrassment. I would recommend schools having a disabled toilet with a shower as well in case the student has an accident they can clean themselves up with too much embarrassment.”

Janet, parent of son 17

8.    Physiotherapy rooms:  Some schools have developed a physiotherapy room on school grounds, which means the student does not have to leave the premises to have physiotherapy.  However, if physiotherapy is done within school, the times that it is offered should be arranged in agreement with the child or young person and their family so they don’t miss out on important social time or lessons.

9.    Changing facilities: Ensure that the facilities students use to change for PE or swimming are accessible and adequate or identify other creative solutions so that the child or young person can still access these activities without feeling excluded or singled out.

2. Practices

All staff need to made aware of the new requirements of a student who has a spinal cord injury.  Adjustments and adaptations may need to be made in a number of areas, including classroom and academic practice, pastoral support and practical day-to-day support.  Many of these areas are covered in other sections of the toolkit d) e) 3b) 3c)

What is particularly important to remember is that the adjustments and new practices should respond to the new requirements and choices made by the returning student, in line with existing structures, teaching practices and expectations where possible.

“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.”

SENCO – Gloucestershire

3. Policies and procedures

When a student with a spinal cord injury enters or returns to a school, it is important to review – and likely revise – the school’s 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 termly 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 do review regularly because the student’s needs constantly change.”

SENCO – Gloucestershire

It should be kept in mind that all policies should be as inclusive as possible – that is, their outcomes should not separate or exclude the student from the ordinary day-to-day activity of the school.  A good way to ensure this is to first write an inclusion policy or statement and then use it to evaluate all school policies with questions like ‘Will this policy or its enforcement exclude any pupil?  If so, how can that be avoided?’

Policies specifically relevant to a child or young person with a spinal cord injury, such as risk assessments, should be written and revised alongside the child or young person and their family.

They should also be regularly reviewed, both within school staff teams and with the child or young person and their family.

Some suggestions on writing and developing individual inclusive policies follow:

1.    Develop a statement of Equality or inclusion policy:  such a statement should be developed and written in a collaborative way, involving all levels of the school community.  Example: Calder High School Equality Policy

2.    Health and safety:  understand what is required in terms of wheelchair safety and balance this with a need for social interaction and inclusion. Through consultation with the young person and their family the school should find a balance between safety and independence. Some of our recommendations include:

  • Allowing other students to push their wheelchair (only with consent from the young person)
  • Looking at how to make heavy fire doors more accessible (e.g. can they be left open when students move classrooms and then shut during lessons?)
  • Deciding on whether early release from classes is both helpful and what the child/ young person wants

3. Fire Safety – PEEPs, evacuation plans and maps:  Ensure the school has a Personal Emergency Evacuation Plan or a PEEP and map for anyone in the community who is a wheelchair user.  Students and families should also be informed of this PEEP so they know what to expect. Devise a fire safety plan that works with the student’s requirements and carefully considers the situation (e.g. is the nearest exit going to be against the flow of traffic and bodies?)

A PEEP is an individual plan, tailored to a specific person. PEEPs can vary from place to place and can depend on the specific case. However, it should include at least:

  • Details of the individual needing the PEEP
  • Details of the allocated escape route
  • The details of the people who would help the individual evacuate
  • The details of the people who will carry out the necessary training and practice of the evacuation plan
  • Information on any special equipment needed for the evacuation
  • If, how and when they need to be alerted to a fire. Do they need flashing lights or a pager for them to notice the alarm, as in the case of deaf employees or visitors?

It is important to draw the plan up with the individual and make sure that they are aware of their specific evacuation plan and of the people who will assist them in the event of an emergency. Here is more detailed information on PEEPs from the Dorset Fire Protection

Contact your local fire service for advice.

4. Manual handling:  ensure there is consistency across staff and consideration about what to do in different circumstances (e.g. if the student falls out of their wheelchair)

5.  Independence:  see that the student has their own key for the lift and for the accessible toilets.

6. Flexibility:

a) provide sufficient time for students to change for PE if required. However, some students have reported feeling singled out if they need to leave another class early to change for PE or to get to the lunch room.  If that is the case, consider other solutions, such as allowing the student to come to school in gym clothes on PE days or setting up a peer support scheme to help students get places on time in a social way.

b) be flexible about practices and policies that can be adjusted to accommodate the student’s new requirements

  • Visits to the toilet
  • Coursework deadlines
  • Coming and going – attendance
  • Drinking or snacking
  • Seating plans

7. Risk assessments:  work with the child or young person, as well as the family, to agree individual risk assessments through a drafting process rather than just presenting the final version.

Resourcing and funding

Many of the changes and adaptations discussed in this section and throughout the toolkit cost little to nothing to implement.  However, some changes like physical adaptations, equipment and support staff do incur additional costs. Research suggests that school building adaptations is often related to availability of funding from the local authority and the attitude towards disability of the school and the local authority.

Changes may be made alongside a school’s accessibility plan and in response to equalities legislation.  It may require careful planning and persistence with a local authority.

Local Authorities provide funding from their budgets. Two main funding streams that support the educational and health needs of school children and young people with a spinal cord injury are:

1.    Education:  Exceptional Needs Funding (ENF)

The school starts the process by applying to the District Support Advisory Group (DSAG).  ENF covers costs of the child’s educational needs, e.g.

  • physical access to the curriculum, which includes specialist equipment for physical education or practical access
  • access to the curriculum, which includes a Teaching Assistant or 1-1 support

Schools should contact the advisory teacher who will carry out an access visit, looking at the school site and assess what work needs to be done.  The advisory teacher will then liaise with the local authority building team to draw up a plan of action.

Buying small pieces of equipment (e.g. writing slope or special pencil) may be expected to come from a school’s own budget but larger items will often be covered by a local authority’s budget.

2.    Health:  Complex Care Funding

Schools start the process by applying to complex care panel, which decides how many hours funding the child can receive.  Complex care covers specific support costs of medical interventions, such as catheterisation or managing a tracheotomy.  It does not cover giving medication or any moving or handling support.

Contact the Advisory Support Teacher or relevant department in your local authority for further details and support on resourcing adjustments.

3.  Transport:

If a child or young person needs adapted transport, this should be outlined in their SEN statement (if they have one) and provided by the local authority.  See the toolkit section on transport for further information.

* From 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.

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