Based on our discussions with people living with EB and their families, we have put together a list of frequently asked questions below. We will continue to add to this page as needed. If you feel we have missed off an important question or have any other suggestions, please email [email protected].

If you need support, please contact our DEBRA EB Community Support Team on 01344 771961 and select Option 1.


Starting and choosing a school

Is there an extra nursery provision for people living with EB (e.g. start earlier, more hours)?

If your child has a disability and is between the ages of 2 and 4, they may be entitled to 15 hours of free education per week, regardless if they have an Education, Health and Care Plan or receive Disability Living Allowance. Please visit the website for Help if you have a disabled child.

All 3 to 4-year-olds in England are eligible for 570 free hours of nursery provision per year. This is usually taken as 15 hours per week for 38 weeks of the year; however, you may choose to take fewer hours over more weeks. Visit the website to view the Get 30 hours free childcare: step by step guide to 30 hours free childcare a week.

The free early education and childcare provision must be with an approved childcare provider and stops when your child starts in reception class (or reaches compulsory school age, if later). You may still have to pay for extra costs (e.g. meals, nappies or trips), but you may be eligible from the term after your child’s 3rd birthday. Please visit the website for more information on receiving 15 hours free childcare for 3 and 4-year-olds.

It is also a good idea to register on the Disabled Children’s Register with your Local Authority (LA) as soon as possible after your child is born. They may be entitled to additional help, such as home learning schemes or portage. Each LA publishes what is known as a ‘Local Offer’ (LO) with details of all the services you can access in your area.

Additionally, you can also apply for direct payments from your local council to help pay for childcare.

How do I start looking at primary schools and secondary schools for my child with EB?

If your child has an EHCP you may have already named a school or will usually have preference as to what school your child can go to. If a particular school is named in an EHCP then you have preference for this school. Research the LA school admissions and the LO to check the provision in your area. For further information, contact your LA’s Information and Advice Service (IASS).

  • Review the admission criteria for your local or preferred schools, then check the schools’ websites and their OFSTED report. Pay close attention to their SEN support section (both on the school’s website and in the OFSTED report).
  • Arrange a visit with schools and gauge how you feel about the them.
  • Apply for your preferred school via the LA school admissions procedure. Unless you have already been in touch with the Local Education Authority (LEA) during pre-school years and have discussed special provisions, normally the parent(s) contact the primary school of their choice; they will then meet with the Head Teacher to discuss their child when the child is 3 to 4 years old. This should not be left any later in case any special arrangements are needed, which can take months to arrange.
  • The LA will send details and applications to families.

What questions should I ask when looking for a school?

There are many things to consider when choosing a school for your child. The questions below should be considered when choosing a school, whether generally about the location or setup of the school or specific queries to meet any special needs your child requires. Visit the Contact website for more information on Finding the right school for your child.


  • How big is the school site - how do pupils move around, is it safe and secure?
  • Will the environment be too overwhelming for a child with sensory sensitivities?
  • Are there quiet spaces for children to work one-to-one or as a 'chill out' space?
  • How accessible is the school for children with mobility difficulties/wheelchair users?
  • Is the school on several levels? If my child needs to use a lift, do they need an adult with them?
  • What are the toilets like? Are there facilities for children who need changing?
  • Are the outside space and playground facilities? Are there quiet areas for children who don't want to run around or play football?

Learning and the curriculum

  • How are classes arranged? Is it strictly by age?
  • For younger children - is there a particular pattern to the school day/week?
  • For older children - ask for a sample timetable. How does the school manage changes between classes?
  • How does the school use teaching assistants? How are class teachers involved if a child has one-to-one support?
  • Is support given within the classroom or by taking children out for one-to-one or small group work?
  • What training is given to support staff?
  • How is work differentiated where necessary?
  • What is the homework policy? Are there homework clubs in school?
  • How does the school set targets and measure progress?
  • What experience does the school have of children with similar needs to my child?
  • Can the school draw on outside specialists or support services?
  • Curriculum and qualifications - are there alternatives to GCSE?

 Social support and communication

  • How does the school help new children settle in?
  • How is pastoral support organised? Does the school use mentors or have a counselling service?
  • Ask to see the anti-bullying policy. How would the school handle disablist bullying?
  • How does the school manage behaviour linked to a child's disability? Are sanctions adapted to a child's SEN or is there a blanket policy?
  • How does the school communicate with parents? Could my child have a home-school book if needed? Are parents able to have a regular catch up (e.g. regular meetings with a child’s teaching assistant)?
  • What happens at break and lunch times - is there any structure and who is responsible for supervision?
  • Are there lunchtime or after school clubs? Are disabled children fully included in these?

Additional considerations for children attending schools for special education needs

  • What areas of need does the school cater for - is there a suitable peer group for my child?
  • Can older children gain qualifications? What about work experience?
  • Do staff have qualifications in teaching children with my child's particular needs?
  • Are there therapists on site? Are therapies delivered on an individual or group basis? Is this by therapists or therapy assistants? How is the therapy integrated into the curriculum?
  • Is there medical support on site?
  • What alternative communication methods are used (e.g. Makaton/PECS)? Are staff trained in these? Is assistive technology available for children who need it?
  • Does the school have specialist facilities (e.g. hydrotherapy pool, sensory room)?
  • How does the school manage behaviour? If they use physical restraint, what is the policy for this?
  • Are there links with mainstream schools? If looking at a special unit, how much time would my child spend in mainstream classes?

What should I look for in a school to know if it is “EB friendly” and what are my best options?

Think about what is important for your child. Visit the school together (if appropriate) and see whether the school ‘feels’ right.

Always research the SEN support section on the school’s website - ask questions about current provision and how they would identify and meet the needs of your child if they were to start at the school. See What questions should I ask when looking for a school? for questions to consider asking prospective schools.

Check their Ofsted report. Book a school visit and visit at least three schools to see which one is best suited for your child. Visit the Contact website for more information on Finding the right school for your child.


Support at school

What do I need to do before the first day of school and who helps me with this?

As early as possible you should make the school aware that your child has EB. The child’s class teacher, school nurse/medical welfare officer and possibly the special education needs officer (SENCO) will all need to know and be involved in IHCP or SEND assessment. If your child has been in another early years setting the SENCO from that setting can help the transition to reception year.

If your child’s EB is severe then it is likely that this will involve advance planning from an early stage. Many people (including the EB nurses, other healthcare professionals involved with your child, social care team and the SENCO from your child’s current early years setting) may be involved in ensuring that your child’s new school is aware of their EB and that any special provisions are made, if required.

Don’t forget that you can also contact the DEBRA EB Community Support Team for support, advocacy and information at any stage in the process.

My school says they cannot help with managing EB (e.g. blister/wound care), is this right?

The Equality Act 2010 prohibits schools from discriminating against disabled children and young people in respect of admissions for a reason related to their disability. EB can be managed in schools through an IHCP, SEN support service and/or EHC plan.

The Department for Education guidance states that it is unacceptable practice to “require parents, or otherwise make them feel obliged, to attend school to administer medication or provide medical support to their child”.

Visit the website for their guidance on Supporting pupils at school with medical conditions, as well as the Special educational needs and disability code of practice: 0 to 25 years.

Can I choose who looks after my child at school?

The school decides who should look after your child on site. However, you can always ask for the staff to be changed.

To request a change in staff looking after your child, you must first put your concerns in writing to the SENCO and follow the school’s procedures regarding complaints for a member of staff. You must provide a valid reason.

Keep a record of every incident in a book with the time and date of when those incidents happened. Depending on the school and their policies, if you receive a personal budget/direct payment, it would be worth suggesting to the school that you would like to employ a carer to look after your child at school.

What do I do if I don’t think my child is getting the practical support at school they need?

Arrange a meeting with the class teacher and SENCO to discuss your concerns. Your DEBRA EB Community Support Manager can help to advocate for you; your child’s EB nurse may be able to provide supporting evidence of your child’s EB and how it affects them.

You can also contact your local IASS, which can be found on your LA’s website.

If things do not change or the support is still not sufficient, follow the school’s complaints procedure that can be found on the school’s website. If you still feel that the issue has not been resolved, then contact your LA.


Assessments for support in education

How do I get an EHCP and when is this done?

Creating an EHCP is usually done when the child starts school so that the school can assess the child/young person’s educational and physical needs. The process may have been started prior to your child starting school and can take place anytime from birth.

An EHCP can be requested by the child’s parents or young person over the age of 16. To request an EHCP, contacting your LA’s SEN department and request an assessment for an EHCP (some have a form to complete on their website).

If your school is supportive and knowledgeable about special needs, they may start off the process for you. If your school is reluctant or contesting your view that the child needs extra help, you will always be better to drive the process yourself.

A LA should carry out an EHC needs assessment if the child or young person has or may have special educational needs (SEN) and if they may need special educational provision to be made through an EHC plan.

Visit our Support at school page to learn more about the different types of support available, including application processes and template letters.

Can you guide me through the process of EHCP what do I need to know?

An education, health and care plans (EHCP) is when SEN support is not enough for your child. It may be needed for children/young people whose EB has a significant impact on their everyday life.

EHCPs are for any child/young person that has a significant and complex Special Educational Need or Disability. An EHCP is required when a child’s needs cannot be met by the usual support that is available to them in their school or setting.

Visit our Support at school page to learn more about EHCPs, including the application process and template letters.

Can I appeal the provision I have been assessed for?

There is a right of appeal to the First-tier Tribunal (Special Educational Needs and Disability) (the “SEND Tribunal”) if you feel the decision made regarding your child or young person is not correct.

You must be a parent or a young person over the age of 16 to appeal a decision. In education law ‘parent’ means you are either a birth parent, have acquired parental responsibility or have care of the child (e.g. a foster parent or grandparent with whom the child lives).

If the decision concerns a child, it is the parent who has the right of appeal. If the decision concerns a young person, then it is the young person who has the right of appeal.

Visit our Support at school page to learn more about appealing a decision and the Irwin Mitchell Solicitors website for a range of factsheets and free template letters.


Accessibility requirements

How do I access specialist equipment for school (e.g. computers, tablets, cushions, etc.)?

The SEND Code of Practice states, “In practical situations in everyday settings, the best early years settings, schools and colleges do what is necessary to enable children and young people to develop, learn, participate and achieve the best possible outcomes irrespective of whether that is through reasonable adjustments for a disabled child or young person or special educational provision for a child or young person with SEN”.

Contact your DEBRA EB Community Support Manager, the pastoral care team or SENCO in your child’s/young person’s school to see what options are available. It is worth asking to be assessed by an Occupational Therapist who can recommend specific equipment.

DEBRA can support you in providing information to the school about EB and advocating for your child. You may also be able to apply for a DEBRA grant or we may be able to recommend other grant schemes to access specialist equipment not available from statutory services.

Is my child required to participate in PE?

Schools must have an inclusive approach to involve children in their PE lessons. Adaptations must be made so that the child/young person with EB can feel included in the lesson with consideration to their physical abilities and what the child/young person can and cannot do. This information should be included in their IHCP from the start.

Your DEBRA Community Support Manager would be happy in assisting with this. If you have involvement from a paediatric Physio or Occupational Therapist they may also be happy to write a letter with some suggestions.

Can my child access support to/from school if they cannot walk that far (e.g. buggy, wheelchair, taxi, school transport)?

All children/young people may be entitled to free transport to school depending on how far the walk is, if they have any special needs and whether the walk is safe. Contact your LA for more information.

All children between 5 and 16 qualify for free school transport if they go to their nearest suitable school and live at least:

  • 2 miles from the school (under 8)
  • 3 miles from the school (8 or older)

Visit the website for more information on Free school transport.

Some members living with EB tell us that their children use scooters to travel short distances. Depending on how EB impacts your child, they may also be eligible for a blue badge, which can make parking near or in school easier.

If you feel your child requires a medical buggy or wheelchair you need to be assessed by your local wheelchair service. You can ask your GP for a referral. The current criteria may mean you are not eligible for free NHS provision but they will still advise you about what would be appropriate. You can also talk to your EB healthcare team for advice as it is not always in your best for your EB to use a wheelchair or buggy.

What can I do for my child who cannot go out due to their EB and what do other children do?

Schools have a number of duties to individual pupils, including that schools must not discriminate against disabled pupils (i.e. not treat them worse than non-disabled pupils) and they must also make reasonable adjustments for disabled pupils (i.e. do things differently for these pupils where necessary). There are a number of things that schools can do to make sure individual pupils are not at a disadvantage compared to their peers.

Working with the SENCO and/or class teacher, the child and parents should be involved in discussing what adjustments can be made so that the child is included, as far as reasonably practical, in all activities.  For children who have an EHCP this may make provision for an adult to supervise the child closely in the playground to ensure they do not get bumped or knocked.

For children without an EHCP, or where this isn’t specified, the school may be able to provide additional supervision (e.g. playground supervisor). There are also a number of other measures the school may take, including:   

  • cordoning off a ‘slow’ or ‘quiet’ zone, so the child living with EB and their friends can play without the fear of being knocked over
  • supporting the child with friendship bubbles, so that the child living with EB always has a peer group to interact with even if they have to stay indoors on occasions
  • erecting canopies for shade on hot days
  • adapting additional indoor/outdoor activities so that the child living with EB feels included

Will my child be allowed on school trips?

Children with EB are allowed to go on school trips. The school must liaise with the parents and carers to make arrangements for the child living with EB to go on trips. If there are concerns, parents and the school should discuss these fully so that adjustments that can be made, where possible. School trips are an important and fun aspect of school life and children living with EB shouldn’t face additional barriers to participation.