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CamRare Family Resources

Educating a child with a rare disease

As children grow up and enter education and nursery, they are faced with many new challenges. One way to help your child cope with education is with special educational needs support from the school and an educational health care plan.

Special needs Vs. mainstream school

It is a common misconception that because a child has a learning disability, they need to attend a special need school. It is worth considering the pros and cons of special needs vs mainstream school.

Mainstream school
In a mainstream school, your child will be in a larger class and mostly with children who don’t have special educational needs (SEN). They are likely to receive less 1-to-1 support than a special needs school but can receive extra help through Educational health care plans (EHC) (more details below). The main benefit of mainstream schools is that your child will interact with lots of children and be taught the national curriculum. This will help them learn to interact with society and do GCSEs that could help with job prospects in the future.

Special needs schools
Special needs schools are designed to teach and look after people with SEN, and the teaching staff specialised in teaching those with SEN. The class sizes are smaller, and they receive more 1 to 1 support with their learning. The curriculum is different and focuses more on life skills like cooking and managing money. Special needs schools often have more specialist equipment for physiotherapists to help with healthcare needs. However, because the school is specialised and taught at a slower pace pupils at the head of the class may fall short of their potential.

Making a decision
Every child is different, and every school is different. The advice from our Unique Feet community is that the attitude of the school is very important. Look at both special needs and mainstream schools if appropriate, but most importantly, find a school that understands your child’s needs and will support them.

It is worth going to the school and meeting the special education needs coordinator (SENCO). All schools should have one. Find out what they can do to help your child and ask what they’ve done for other children.

The links below provide more information on SEN in mainstream schooling and how to pick a school





What is an educational health care plan (EHC) or (EHCP)?

All schools are meant to provide support to children with special educational needs (SEN),but in large classes, this can be not easy to do. In cases where you feel your child is being left behind or requires more support than they are receiving from the school, they may beeligible for an Educational health care plan (EHC).

An EHC is a legal document that outlines your child’s educational needs and details how a specific school will address them. This plan is agreed upon by you, the parent, and the local council. If the plan is not followed, the council can be taken to Judicial review to force them to provide the care your child needs.

Is my child eligible for an EHCP?

To receive an EHC your child must:

  • Be aged between 0-25
  • have additional educational needs that are holding them back at nursery school or college.
  • need more help than the school is currently providing

What is included in an EHCP?

EHC is a lengthy document that takes up to 20 weeks for the council to complete. It covers:

  • Your child’s SEN.
  • Health needs relating to SEN or to disability.
  • Social care needs relating to SEN
  • The planned outcome for your child
  • SEN provisions (what the school or nursery will provide to meet these outcomes)
  • Health care provisions
  • Social care provisions
  • The name and type of school your child will go to
  • Details of how any personal budget will be used to support particular outcomes
  • Advice and information gathered during the EHC process



What can I recieve as part of an EHCP

  • Special education provisions in their school
  • Therapists such as speech and language, OT, physiotherapists, sensory impairment teachers and mental health staff
  • A placement in a mainstream school with an alternative resource provision or at a special needs school
  • Anything else they need to get the most out of their education, such as home-to-school transport
  • Health and social worker support outside of school
  • Laptop or other assistive technology

How do I get an EHCP?

The easiest way to get your child assessed and given an EHCP is to start by agreeing with the school or nursery that a plan is necessary. Schools will usually provide Special education needs (SEN) support first, and if this doesn’t work will progress to an EHCP. If you apply for an EHCP before the school has tried to make any adjustments, it may be rejected because
schools are meant to work with the child and the SEN team before applying for an EHCP. 

That said, your child has a legal right to an equal education, and the school does not need to agree for you to request an EHCP. If the school doesn’t think your child has SEN or they think they are fulfilling those needs without and EHCP, you can apply directly to the council for an EHCP assessment, and there is a template letter below.


What can I do if I get rejected or I'm not happy with the EHCP?

Anecdotally some local authorities will refuse EHC for non-legal reasons. Education advocacy has this to say: “Most common reasons for rejection are:

  • A lack of diagnosis of the special educational needs of the individual
  • No report from an educational psychologist
  • The child is not deemed to be far enough behind their fellow students
  • The local authority enforces their policy provision matrix – e.g. attainment not below the 2nd percentile and therefore not bad enough for an EHCP.  Such a blanket policy is likely to be illegal.

These reasons usually fall apart at the tribunal as they are local policy and not the “letter of the law”


If you are denied an assessment for an EHCP or you are unhappy with the EHCP you are given, you can take the council to a tribunal. Education advocacy as well as other law firms, offer a free 30-minute consultation for legal advice on this subject.




Useful links