Your Child and Special Educational Needs

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This fact sheet gives you information and guidance if your child has special needs and needs extra support at school.

Most children with heart conditions will have no problems at school. However, some children with heart conditions may need extra help at school.

Special needs at school
A difficult start to life may mean some children with heart conditions find it hard to keep up with children of the same age. Some children with heart conditions are also likely to have other difficulties, including the following.

  • Physical limits – your child may not be strong enough to take part in playground or physical activities. Some children may also need help with opening toilet doors, turning taps on, carrying a bag of books, using stairs, and so on.
  • Learning disabilities – some children may have learning disabilities as a result of earlier surgery or due to conditions that can happen alongside some heart conditions, such as Asperger’s syndrome.
  • Social difficulties – some children may find it difficult to communicate clearly or interact with other children.

The needs of children with heart conditions can also vary according to the stage of treatment or recovery they are at. For example, after surgery they may be very well for a while, but then gradually develop more problems as they outgrow previous surgery.

Taking action
If you have concerns about your child, you should explain these to the school and ask them to take action.

The school will have a policy on dealing with children with special educational needs (SEN), which you can ask to see. The levels of action the school can take are as follows.

1 School action
Your child’s head teacher or SENCO (special educational needs coordinator) can put together an individual education plan (IEP) outlining:

  •  your child’s needs;
  • what action will be taken to help your child;
  • how often;
  • what should be achieved (targets); and
  • when progress will be checked.

2 School action plus
If the school feels that your child would benefit from other specialists as well, they can ask for help from outside services or specialists to help meet your child’s needs. This should be done after a meeting with you, the SENCO and other professionals involved with your child.

3 Asking for a statutory assessment
If it is felt that your child still has extra needs which cannot be met by the actions shown above, you or the school may ask for a statutory assessment. This assessment will be used to produce a statement of special educational needs.

Reasons for getting a statement
Many children with learning disabilities get statements of special educational needs. There are also physical reasons why children with heart conditions might benefit from a statement, such as:

  • difficulty walking upstairs, carrying books, opening heavy doors, and so on;
  • breathlessness;
  • unstable heart rhythm;
  • having a nasogastric or gastrostomy tube for feeding; and
  • long periods away from school due to illness or being in hospital.

Statutory assessment
Once you or the school have asked for a statutory assessment, the LEA must decide within six weeks whether or not to carry it out. They will consult you, the school and other health professionals before making their decision.

The LEA will write to say whether they are going to carry out an assessment and if so, they will:

  • say how they will carry it out and the timescales;
  • give you the name of a contact at the LEA ; and
  • ask you to give your reasons and provide evidence for why your child should be assessed. (You have at least 29 days to do this.)

If the LEA refuse to do an assessment, they should tell you:

  •  why not; and
  • how your child’s needs can be otherwise met.

If this is case, talk to the school about extra help that could be arranged without an assessment. Or you can appeal against the LEA’s decision through the Special Educational Needs Tribunal. You can also contact the Parent Partnership service for independent advice and support. (We provide contact details at the end of this fact sheet.)

The LEA assessment
If the LEA agree to do the assessment, they will ask various people to give their views on your child. They usually ask for advice from:

  •  your child’s school;
  • an educational psychologist;
  • a doctor;
  • social services (if they know your child); and
  • anyone else they think is appropriate.

You will also be asked for your views, and they may also talk to your child.

You can also suggest any other groups or professionals you know may be helpful, for example, your child’s cardiac liaison nurse or a dyslexia expert.

A statement of SEN
Once they have done the assessment, the LEA will decide whether or not to make a statement of SEN within 12 weeks.

If they decide not to make a statement, the LEA will explain how they think your child’s needs should be met. If you disagree with the LEA’s decision, you can appeal to the Special Education Needs Tribunal, or use the disagreement resolution service.

How the statement is put into practice
At first, the LEA will send a draft statement describing your child’s needs and the measures needed to tackle them. It is important to check if the statement:

  • lists all of your child’s needs and difficulties;
  • lists everything your child needs;
  • gives details of any special equipment your child needs; and
    is easily understood.

If you are unhappy with anything written in the statement, you should speak to your named contact at the LEA as soon as possible. You can also get advice from the parent partnership service, IPSEA (see contact details at the end), or appeal to the SEN Tribunal.

The LEA will review your child’s statement at least once a year, checking your child’s progress and making sure that the statement continues to meet their needs.

Building a partnership with the school
Forming a strong partnership with the school is central to getting the right support for your child. By creating a close relationship with the school, you can work together to help them plan appropriate support or other activities for your child.

It is important to give the school as much information about your child’s heart condition as possible. You can also ask your child’s cardiac liaison nurse (CLN) to speak to the school. CLNs are trained to advise teachers on meeting your child’s needs and are also normally able to reassure them about any concerns they have.

For support with getting a statement, you may want to ask the head teacher or other relevant professionals to write a letter that supports your application. You can also get advice from IPSEA (Independent Panel for Special Education Advice) on 0800 0184016.

Moving up to secondary school
Your child’s junior school will send any reports or notes on your child’s special educational needs, including their statement, if they have one, to the secondary school directly.

Useful contacts and more information

  • You may also want to have a look at our fact sheet ‘Information for teachers’. Order it on our freephone infoline 0808 808 5000 or download it from our website –
  • Visit the government website for a range of information and resources on special educational needs.
  • IPSEA (Independent Panel for Special Education Advice)
    Phone: 0800 018 4016
  • Special Educational Needs & Disability Tribunal (SENDIST)
    SEN helpline: 0870 2412555
    Discrimination helpline: 0870 065750
  • Parent Partnership Network:
    Phone: 020 7843 6000
  • The National Association for Special Educational Needs (NASEN) promotes the education, training, and development of all those with special educational needs.
  • MedicAlert – 0800 581420
    Many parents have found a MedicAlert bracelet useful for getting suitable care in an emergency.

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