Starting school

Your Local Authority maintains a published a list of schools, as well as a ‘Local Offer’ detailing additional provisions relevant for children in the area and living with a disability.

When visiting a potential primary school tell them about EB and how it affects your child, and ask them how they would offer support. It might also help to think about some of the following questions and how your child can cope whilst at school:

• Is the building spacious or overcrowded, affecting the possibility of bumps and falls? Is the school eager to put measures in place to give your child some space if they need it?
• How far would your child need to walk? If you drive to the school, what is the parking provision? If your child walks to school when they are older, how far would they have to walk?
• Is the building on one level or are there many steps and stairs to manage? Are there long distances to walk between classrooms and play areas?
• Is the playground suitable with a quieter area or shaded area available, if needed?
• Would your child be able to stay indoors with one or two school friends if necessary?
• Can the school offer emotional support in case your child needs it?
• Are the school staff and teachers willing to learn about EB and what care your child will need during the school day?
• How has the school responded to current pupils with additional medical needs?

The Special Educational Needs and Disabilities (SEND) support and welfare provision the school can offer may be a consideration in which school you eventually choose and, therefore, this might be something you explore when visiting potential schools.

When you have chosen a school, you may wish to help the class teacher and other key people within the school learn about EB and your child’s care needs. You should contact your LA Information and Advice Service (IASS) for help.

If your child’s EB has a significant impact on their health then their EB nurses or other health and social care professionals may already be involved in ensuring your child receives support through an Education, Health and Care Plan (EHCP). Your DEBRA EB Community Support Manager can help you navigate this process and advocate your needs when meeting with health professionals. Visit our support at school page for more information about EHCP and other help.

If your child already receives support in their early learning setting with an Individual Health Care Plan (IHCP), SEND support plan or EHCP, this should be communicated to the primary school at the earliest opportunity.

In addition to health plans, you may need to work with the school so they support your child in other ways. Some of the more common adjustments include:

• Reduce friction – cushion for chair/floor sitting, allowed different school bag, uniform requirements relaxed
• Avoid heat – not sat by window or radiator, shaded outdoor space, fan available
• Help with fine motor skills – use of pen grips, tablets and computers; easy use scissors; extra time to complete tasks
• Avoid excessive walking/some PE activities – minimise amount, allow extra time, adapt games (e.g. referee, use sponge balls)
• Avoid being bumped and knocked – playtime initiatives, not being seated where lots of people have to pass by your table

Key staff at your child’s primary school

When your child starts at a new school, you should familiarise yourself with some of the key staff involved in your child’s care:

• SENCO (special educational needs co-ordinator) – A SENCO’s responsibilities include supporting all students who have additional physical, learning or emotional challenges.
• Year Lead – Most schools have a member of staff responsible for supporting and overseeing students in particular year groups. If there are any issues regarding education or your child being bullied, always talk to the class teacher first. If the issue is still not resolved then you should usually contact the Year Lead. Always check the behaviour and bullying policies at the school; these can usually be found on the school’s website.
• School Nurse/Medical Welfare Officer – Normally your first point of contact for any health issues during the school day, the school nurse or medical welfare officer should be made aware of your child’s health needs. It is normally their role to be involved in drafting an individual health care plan.
• Pastoral care staff – Pastoral care staff look after the welfare of students, supporting students and their families to access learning and with additional home or emotional support. They can help when a child is experiencing bullying or if a child has low attendance. EB is a rare condition and, once they understand more about EB and how it impacts your child specifically, they can help to support you with the condition.

When your child attends school for the first time, you may want to start to think about what adjustments your child may need in and out of school:

• Lunch times – Do they need more time to eat? Are school meals suitable/does your child have any mouth issues?
• Playtimes & PE – Does your child need to limit walking/running to prevent blisters? If your child uses a wheelchair, are they able to use it in the playground area?
• Uniform – Would your child need to wear non-standard school shoes? Does your child have problems with certain types of clothing rubbing areas affected by EB (e.g. polo shirts)?
• Bags – Is there a standard bag used by all students at the school? Would your child need to select a bag carefully to avoid friction or have help to carry it?
• Getting to and from school – How will your child get to/from school, when they are younger and as they start to grow older?

Your child may be eligible for free transport to school depending on the length of the walk, any special needs they have and whether the walk is safe.

If your child cannot walk to school because of their EB, they may be entitled to free school transport – contact your local authority. 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)

Some members tell us that their children living with EB use scooters to travel short distances. Depending how EB impacts your child they may also be eligible for a blue badge, which can make pick-up or drop-off at school easier.