Every child with Dravet syndrome will have different educational needs and it is important for you to understand the options available to support your child’s learning. This will help you to ensure that you make the right decision for you and your child and that their special educational needs (SEN) are met. This may be in a mainstream school or nursery with extra support, or in a special school.
a) Your Child’s Rights to Additional Support
If you are considering sending your child to a mainstream nursery or school, make sure you are aware of the additional support that you can receive. This will vary from school-to-school so it is important that you research your local schools and arrange a visit to understand what extra support is available at each. All state-funded schools (including nurseries and playgroups) should follow the Special Educational Needs Code of Practice Guidelines which provides information on how schools should assess and meet SEN.
Your child should be allocated a Key Worker or Special Educational Needs Co-ordinator (SENCO) who can help you to work out what additional needs your child might require. This could be a teaching assistant with them in the classroom, a specific method of teaching or additional help outside the nursery or school, such as a speech and language therapist.
b) Responsibilities of Mainstream Schools
It is important to remember that the Government’s education policy is focused on helping all children achieve their potential and have equal opportunities within their learning environment. It is also illegal for any child to be discriminated against due to a disability or special educational needs. This is reinforced by a law known as The Equality Act 2010 and The Special Educational Needs Code of Practice which plays an important role in ensuring that schools are aware of their role in ensuring this is realised.
The focus of The Special Educational Needs Code of Practice is ensuring that children’s special educational needs are identified as quickly as possible and that early action is taken to meet those needs. It also places emphasis on monitoring the progress of children with special educational needs towards identified goals.
c) Early Years Action and Early Years Action Plus
The Early Years Action plan is offered to children at an early age with additional educational needs. This may be due to them not progressing as expected or due to behavioural, sensory or physical problems they are experiencing.
A Key Worker or Special Educational Needs Co-ordinator (SENCO) will carry out an assessment of your child’s needs to decide what support they require and develop an Individual Education Plan (IEP). This will highlight what special help will be provided at school/nursery, what you can do at home, and include targets for your child to achieve.
You should meet regularly with your Key Worker or SENCO to discuss your child’s progress and if your child is not making enough progress through the Early Years Action programme, they may be able to receive additional support. This is referred to as Early Years Action Plus.
d) Education, Health and Care Plan (EHC Plan)
You or your nursery/school can ask the local authority for a formal assessment of your child’s special educational needs to help ensure they receive additional support. Based on your application, the local authority will decide whether or not to assess your child or issue an Education Health and Care (EHC) plan, which brings your child’s education, health and social care needs into a single, legal document (this document replaces Statements of SEN and Learning Difficulties Assessments for children and young people with special educational needs).
The assessment will be based on conversations between the local authority and a number of people including you and your child, their school or nursery, doctor and an educational psychologist. Once the authority has collected all the information it needs for the assessment, it will decide whether or not an EHC plan is necessary (if they decide not to proceed with a plan, they must inform you within 16 weeks of the initial request).
When drafting the EHC plan, your local authority should work closely with you and your child to make sure the plan takes full account of your views, wishes and feelings. Once the plan has been written, a draft will be sent to you. You will be given 15 days to comment on the draft and you can ask for a meeting to discuss it if you want one. At this stage, you are able to request a specific school, or other setting, that you want your child to attend. Your local authority has 20 weeks from the request for the EHC needs assessment to issue the final plan to you. Once an EHC plan has been finalised, your local authority has to ensure that the special educational support in section F of the plan is provided, and the health service has to ensure the health support in section G is provided. This should help to enable your child to meet the outcomes that you have jointly identified and agreed.
Your local authority has to review your child’s EHC plan at least every 12 months. That review has to include working with you and your child and asking you what you think and what you want to happen, and a meeting which you must be invited to. It is also an opportunity to update the plan to assist your child’s development and ensure it is relevant for their progression. It is important that you provide an honest account of how you feel your child is progressing and discuss any concerns you have. You can also actively suggest ways you feel this can be improved or any further support you feel would benefit your child. If your child has an EHC plan you may be entitled to a personal budget, which allows you to have a say in how to spend the money on support for your child.
You can use your personal budget in three ways (or as a combination of two or more of these options):
- direct payments made into your account – you buy and manage services yourself
- an arrangement with your local authority or school where they hold the money for you but you still decide how to spend it (sometimes called ‘notional arrangements’)
- third-party arrangements – you choose someone else to manage the money for you
You have the right to appeal if you disagree with your child’s final EHC plan (or if you disagree with the local authority’s decision not to provide an EHC plan if this should be the case). Your local Parent Partnership Scheme will be able to guide and support you through the process.