This information has been created for parents of children with complex heart conditions to improve their understanding of the support available to enable their children to reach their full potential in the school/education environment.

In September 2014 the process for supporting children with added needs in school was changed. Gradually over the next three years School Action, School Action Plus and Statementing will be replaced with school-based support and/or an Education, Health and Care Plan (EHC Plan). Support with education will no longer be allocated on an hour-by-hour support basis but provided as a budget to be spent on each pupil. The funds will come from either the school’s Special Educational Needs budget or from added local authority (LA) funding and in some cases parents, or older pupils, will be able to decide how the money can best be used to support their child’s, or their own, education.


The new process

As part of the Children and Families Act 2014, in England, the new Special Educational Needs and Disability Code of Practice pulls together support for educational, health and care needs into one process and it begins from age 0 and goes to age 25, where an educational need has been identified.

Principles of the Code

  • The participation of children, their parents and young people in decision making.
  • The early identification of children’s and young people’s needs and early intervention to support them.
  • Greater choice and control for young people and parents over support.
  • Collaboration between education, health and social care.
  • High quality provision to meet the needs of children and young people with Special Educational Needs and Disabilities.
  • A focus on inclusive practice and removing barriers to learning.
  • Successful preparation for adulthood, including independent living and employment.

This work is supported by the new guidance for ‘Supporting pupils at school with medical conditions’, which is also part of the Children and Families Act 2014. Every child with a single ventricle heart condition should have an individual Healthcare Plan regardless of whether or not they fit the criteria for the full Education, Health and Care Plan.

What is a special educational need?

If a child has problems with any of the areas below that affect their ability to learn, they may have a special educational need (SEN). Other children may have SEN without a diagnosis or a disability.

  • Reading, writing, numbers.
  • Talking and listening.
  • Developing social skills.
  • Physical skills.
  • Emotional, mental health and behaviour.
  • Long-term medical condition or disability.

Who identifies that a child has a special educational need (SEN)?

There is now a collective responsibility for the progress of each child in the classroom. Any one of the people below can raise concerns about a special educational need (SEN):

  • Parents, children and young people are responsible for raising concerns
  • Teachers, special educational needs co-ordinators (SENCOs), head teachers and governors are responsible for ensuring educational progress.
  • Healthcare professionals e.g. specialist nurses, cardiologists, community health teams and school nurses are obliged to interact with schools where there is a pupil with a long-term medical condition so that the school understands the impact that a health condition can have in the school environment and what support a child may need to safely manage their health condition in school or within school activities with regard to the progression of their learning.
  • Community social care provider, e.g. social worker.

When a need is identified, what support is available?

Special educational provision

Once the nursery/school or further education provider has identified a special educational need they will work with the pupil and their parents to establish the plan to support each individual child’s learning. This process needs to start promptly as it can take some months to move through all of the steps. This will be co-ordinated by the special educational needs co-ordinator (SENCO) and can take a number of different forms.

1. School based support – Quality First Teaching

Schools are now awarded a small budget to support pupils within the classroom who have an identified SEN. They may provide:

  • a special learning programme for your child.
  • extra help from a teacher or a learning support assistant.
  • small group working with your child.
  • support for your child with physical or personal care difficulties, such as eating, getting around school safely, toileting or dressing.

The school must make parents, children and young adults aware of the provision they have identified but this is a school based provision and will not require a full EHC Plan. This support replaces School Action.

2. Added school based support – special educational needs support (SEN support)

Where schools see that more funding is needed to support their plan they are able to seek added support from the local authority. This is again school-based support and does not require a full EHC Plan. This replaces School Action Plus. These actions will be assessed and evaluated by the SENCO.

3. Longer-term significant support to learn

This will be needed when the child or young person has not made the expected progress despite the school having taken relevant and purposeful action to identify, assess and meet the identified Special Educational Needs. An application for an Education, Health and Care Needs assessment will be made to the local authority. If the assessment finds that significant extra support is needed, it will take the form of an Education, Health and Care Plan, which replaces the current Statement of Special Educational Needs.

Who can request an assessment?

An Education, Health and Care Needs assessment is a legal process carried out by the Local Authority. It isn’t to be confused with other assessments which teachers, your GP or other professionals may arrange for your child. It can be requested by:

  • The child’s parent – see draft application letter.
  • A young person aged 16 – 25.
  • A person acting on behalf of a nursery, school or post 16 institution.
  • A person in charge of a Youth Custodial Establishment 11 – 18.
  • Other professionals that feel that there is a significant developmental or sensory need, for example a paediatrician or community healthcare worker.

Schools would hope to be able to fulfil their commitment to each child’s learning and medical support without having to go down the formal assessment process but in the case of a severe learning or physical disability it might be needed.

What happens during the process?

Step 1

The local authority considers the request

They must inform the person who has submitted the request within six weeks if they are going to carry out an EHC Needs assessment. See EHC Plan process flow chart.

If they  decide not to assess you will have the right to appeal and the local authority must give you information about how to proceed. See information on Appeals.

Step 2

The local authority undertakes to seek further information

  • you and your child (Our Story or My Story)
  • the nursery, school or college your child attends
  • an educational psychologist
  • health and social care services
  • others whose views may be important

What is the ‘Our Story’ submission?

  • Parent views on their child’s needs, drawn up in consultation with the child or young person.
  • How the parent thinks the child/young person’s needs may be met.
  • Parents’ aspirations for the future.

This should be as brief or as detailed as the child and family wish; however it needs to be concise and relevant. The story, together with the chronology should remove the need for the continual retelling of their situation. This can be submitted as a profile sheet. See Our Story example.

What is the ‘My Story’ submission?

Young people over the age of 16 will be expected, with support, to submit their own thoughts on their needs and aspirations in the same format as the Our Story above. See My Story example.

There will also be a question about how the budget allocated to support a child or young adult’s education will be administered. This is a choice for the family. They can manage the budget themselves or it can be managed by the school or college in partnership with the parents, child and young person. See further budget information below.

The EHC Plan meeting

The local authority decides whether your child needs a plan having looked at all the information collected from you, your child and professionals working with your child. This is at an EHC Plan meeting.

Parents will be asked to attend this meeting.

The LA will make the decision at the meeting, talk about it with you and then write to you to confirm it. If your child does not need a plan they will also include in that letter information about how to appeal the decision if you are unhappy with it.

Step 3

Education, Health and Care (EHC) Plan is awarded

What does the EHC Plan offer?

An EHC Plan is a legal document that describes a child or young person’s special educational, health and social care needs. It explains the extra help that will be given to meet those needs and how that help will support the child or young person to achieve what they want to in their life. The plan is drawn up by the Local Authority using all of the information that has been submitted to them.

An EHC Plan can be issued to a child or young person between the ages of 0 and 25 years.

What does an EHC Plan look like?

The plan has 12 sections labelled alphabetically:

A: The views, interests and aspirations of your child.

B: Special educational needs (SEN).

C: Health needs related to SEN.

D: Social care needs related to SEN.

E: Outcomes – how the extra help will benefit your child.

F: Special educational provision (support).

G: Health provision.

H: Social care provision.

I: Placement – type and name of school or other institution.

J: Personal budget arrangements.

K: Advice and information – a list of the information gathered during the EHC Needs assessment.

The plan should be written so that everyone can understand it. It should be clear and detailed about the amount and type of support your child will get and how the support will help your child.

Back to top ^


Personal budgets - Education, Health and Care Plans

All Councils have to offer personal budgets as part of the new Education, Health and Care Plan process in place since 1 September 2014. There are choices of how that budget can be used.

  • Direct payments to the parents/carers or young person for them to use in a way that meets the identified support required in the EHC Plan. This will be done in partnership with the school or further education institution.
  • Or the payment is made directly to the place of education for them to administer to meet the support identified in the EHC Plan.

Personal budgets are about increasing choice and control. If a parent/carer does not want a direct payment, they can still have increased choice and control by having a discussion with the education team about how the money could be spent on their behalf or about how they would like something done slightly differently. This may be as simple as doing an out-of-school activity such as swimming on a different day of the week. Whilst this may be simple to arrange, it may make a significant difference to the family.

Back to top ^


Review of the EHC Plan

The EHC Plan must be reviewed at least once a year. This is a chance for everyone involved in supporting your child to check how well they are progressing and whether anything needs to be changed. At the end of the review the local authority may make changes to the plan, end it or leave it unchanged.

The plan will remain in place until your child leaves education or the local authority decides that your child no longer needs it to help them in their education. If you move to another local authority the plan will be transferred.

Back to top ^


Changing from Statementing to EHC Plans

Children who currently have a Statement of Special Educational Needs will gradually be reassessed and, where need is still identifiable, transferred over to have an Education, Health and Care Plan. Children transferring from primary to secondary school are one of the priority groups but all children should have been transferred in the next three years.

Back to top ^


Appeals and disputes

The Special Education Needs and Disability Tribunal is an independent panel which hears appeals from parent and carers about EHC Plans. See Appeals Process flow chart.

What decisions can you appeal?

You can appeal decisions about:

  • Whether your child should have an EHC Plan.
  • A change to an EHC Plan.
  • A re-assessment for an EHC Plan.

You can also take claims of disability discrimination against the local authority or a school or college to the tribunal.

However you must consider independent mediation first unless the appeal is about disability discrimination or the school named in your child’s EHC Plan.

What is independent mediation?

Mediation is a way to resolve differences. It involves a person (a mediator) who is independent of you and the school, college or the local authority, who helps you to talk constructively about your disagreements.

If you wish to appeal against:

  • An assessment for an EHC Plan.
  • A special educational part of an EHC Plan.
  • A health or social care part of an EHC Plan.

you must contact an independent mediator before you appeal.

How to get mediation

The local authority will tell you about how to get mediation in any letter they write to you about your child’s EHC Plan or assessment for a plan.

Back to top ^


Appealing a decision

The Special Educational Needs and Disability Tribunal is made up of a panel of experts, including a judge and two other members with experience in SEN and disability.

Who can appeal

You can appeal to the tribunal if you are a parent or carer of a child aged 0 to 16 or if you are a young person aged 16 to 25.

When to appeal

You need to appeal within two months of receiving a decision about your or your child’s plan or assessment for a plan.

How to appeal

Details of your local authority’s appeal process can be gained from their website or by ringing the contact number on the decision letters sent to you.

The tribunal will write to you to tell you of its decision and the reasons for that decision.

The tribunal’s decision is final. There is no right of appeal unless it has made a decision on a point of law. It it has, it will give you information about the next steps in the letter it sends you with its decision.

Back to top ^


Further information and support for this process

Department of Education

Council for Disabled Children

Contact a Family


IAS Services (previously known as the National Parent Partnership network)

If you would like to discuss any of the information above with the Little Hearts Matter team don’t hesitate to give us a ring on 0121 455 8982 or email [email protected].

Updated: May 2015

Review due: May 2018

Be social with us - our latest tweets and posts