Special Educational Needs and Disabilities ​and Neurofibromatosis Type 1​

Children with NF1 can thrive in school and have fantastic achievements, but some will need additional support to meet their potential. ​Difficulties in school and further education are common in children with Neurofibromatosis Type 1, with 75% or more of all children with NF1 having some form of learning difficulty.

​It is important to work closely with your child/young persons nursery/school/college to identify any difficulties as early as possible to ensure the correct help is available. Children with NF1 will have learning problems that are not unique which means that some of the interventions readily available will be able to help and support a student with NF1.​

Common difficulties include-

    • Low self esteem and confidence.
    • Performance varying from day to day without apparent reason.​
    • Difficulties with poor concentration.​
    • Working memory and processing difficulties.​
    • Dyslexia, Dyscalculia and other learning difficulties.
    • Difficulties with reading writing and mathematics that could be caused by Dyslexia or Dyscalculia.​

Communication and interaction- Social communication difficulties are common in people with NF1 with around 50% having an additional diagnosis of ASD or ADHD. ​

If you have concerns about your child’s education or you wish to discuss NF1 with your child’s school make an appointment with the school SENCO and take information on NF with you to your appointment. If leading up to this appointment or following this appointment you would like and help or support please contact or SEN Advocate Clare Barklam.

CTT have a number of resources and useful links available to you:

CTT Special Educational Needs Advocate…

Clare’s email address:

Clare is the SEND Advocate for CTT as well as being trained in the special educational needs system Clare is also a trained Paediatric Nurse and has experienced NF1 first hand as a student and as a Mother. Clare first became interested in the world of SEND when her son was struggling at school, now 3 years and a few tribunals later she has two children with EHCPs one educated in a independent specialist school and the other educated at home, she has experienced the SEND system first hand and is now working to support our children, young people and families with their educational journeys.

Clare can offer advice via email and telephone, attend virtual meetings with schools, support EHCP applications and help with paperwork and provide EHCP checking services. ​Clare will also be offering teaching sessions on the EHCP Process for those of you thinking of applying or going through the process.​

Education and NF1 what are the next steps​

Additional help and support is available in a variety of different ways, it is important to know which is the right next step for your child…

Who should we talk too?

Raise any concerns you have with your child’s teacher initially, they will know your child best in school and be able to advise if they have any concerns about your child.​ Share information about NF1 with the school at the first opportunity and request the information is shared with each new teacher, a one page profile about your child and how NF1 affects them is a good tool for when there are supply teachers or in larger schools. The SENCO will be able to help with this. ​

Every school has to have a SENCO this is sometimes a class teacher, the head or deputy head or a teacher who solely works with children with special educational needs. A SENCO manages the education of children with SEND within a school and works closely with the head and class teachers. They are the best person to talk to about your child’s diagnosis and any concerns you have, they will ensure any training required is delivered to your child’s teachers and will mange the professional input and support your child needs within school. ​

The SENCO can help with referrals to other professionals such as Speech and Language, Educational Psychology, CAMHS, Occupational therapy or other local services that offer support in schools.​ If you feel the SENCO is not supporting you, you can talk to the head teacher or Local Authority SEND team.​

What is the SEN register?

The Special Educational Needs and Disabilities register is a record of all pupil at the school with SEND and the support they may require, the school is expected to closely track the progress of these pupils, this is often done via IEP’s/ Plan Do Review or individual action plans. This is SEND support, the school has a notional budget to meet the needs of this pupils which is not ring fenced.​

Many children with NF1 will meet the criteria to be listed on the SEN register due to medical and educational difficulties and/or disabilities. Speak to your child/Young persons school about your child being placed on the register. ​

What is an EHCP..

An Education and Health Care Plan is for children and young people up to 25 years old who need more support than is available through SEND support. ​EHCP’s identify the educational, health and social care needs of a child or young person and the provision required to meet each of those needs. A EHCP is a legal document and is legally enforceable meaning the provision detailed must be provided unlike a IEP. A request can be made by anyone who feels a assessment is necessary including teachers, Drs, health visitors and parents.​

What is an IEP…

An Individual Education plan, Individual Action Plan, Plan Do Review .. Are the terms used to describe the robust planning and reviewing processes that must be in place for all pupils on the SEN register. It will detail the childs needs, what action will be taken to meet those needs and when it will be reviewed. There should also be a 1 page profile for the pupil and evidence the child and families wishes and feelings have been included. These are not legally enforceable documents though school should make best endeavours to follow them.