Our free EHCP Support Service helps parents and carers of children with Down syndrome at every stage of an Education, Health and Care Plan, from knowing when to apply to checking the draft. It includes one-to-one calls, drop-in sessions, draft EHCP checks and online groups for families starting school in the same year.
An Education Health and Care Plan (EHCP) is a legal document that describes your child’s special educational needs and the support they must receive. For children with Down syndrome, an EHCP is often essential because it:
The reality is that most children with Down syndrome will need more support.
An EHCP will ensure that once your child is in school, that the LA contributes towards any extra costs of the provision (training the child needs or training that the school needs to support your child).
Critical timing advice: Apply for an EHCP assessment approximately a year before your child starts school (ideally late spring / early summer).
This gives you time to:
Important: Look to apply at the latest within a few weeks of your child turning 3, ideally between the age of 2 and 3.5.
Never apply for an EHCP assessment after the first week of July, as schools and nurseries will be closed for summer holidays, making it impossible to gather required information.
Getting the right professionals involved: The EHCP process relies heavily on professional reports.
If you don’t have the right professionals providing input, your EHCP will have gaps.
Here’s who you need to consider involving before starting the process:
Waiting lists can be months long, so start these referrals early through your GP or local NHS service.
Most children with Down syndrome benefit from SaLT, even if their speech seems good. A therapist can advise on communication, listening, attention and concentration at school.
Advises on seating, tables, writing tools, eating, drinking, dressing, toileting and sensory needs.
Records low muscle tone (hypotonia) and flexible joints (hypermobility). If your child is not yet standing or walking on their own, a physio can suggest exercises and equipment.
Children with Down syndrome often have reduced sharpness of vision. A referral to your local NHS eye care team means changes can be made to support learning.
These professionals are involved as part of the EHCP needs assessment.
Gives an overview of your child's health and records any medical conditions that affect learning, for the health sections of the EHCP.
Assesses how your child learns and recommends teaching approaches.
If your child has hearing loss, they advise on where your child sits in class and other changes, train staff to look after hearing equipment, and practise hearing tests with your child.
If your child wears glasses or has a vision condition, they advise on font size, colour contrast and the classroom, practise vision tests with your child, and may refer to a habilitation team to assess the school.
Additional Specialists to Consider:
Start referrals early – you need to do this via your GP or local NHS service. Find out waiting times for each service, as some may take months to arrange appointments.
You have the legal right to ask your local authority (LA) for an EHC needs assessment. Your child's nursery or school can also ask, but making the request yourself means you know the exact start date.
The LA should confirm it has received your request. If you haven't heard within a couple of weeks, follow up to check it arrived.
Over the next few weeks, the LA gathers early information from the professionals who know your child.
By week 6, the LA must tell you whether it will carry out a full assessment. This is based on early information from professionals and your child's nursery or school.
What to do now:
You'll be asked to write Section A of the EHCP: your family's views and your child's hopes for the future. This may happen at a meeting with the LA.
These hopes matter most, because they set what the EHCP is working towards.
All professional reports should be completed by now. If you know one is late, let the LA know and ask them to chase it.
If the LA agrees to issue a plan, you should receive a draft EHCP with all the professional reports included. Check it carefully and chase any reports that are missing.
Make a note of the date on the draft. Your 15 days to respond start from that date.
You have at least 15 days from the date on the draft to respond. Keep the envelope with the postmark. Within those 15 days you can:
Template email to protect your rights:
Dear Case Officer, Thank you for sending the draft EHCP for my child [name, date of birth]. I am seeking advice and will be making parental representations shortly. I would like: 1. For the local authority not to finalise the EHCP on day 15, pending my parental representations, in line with SEND Code of Practice 9.77. 2. To request a meeting with the local authority to discuss the proposed changes. Please let me know your available dates after the 15-day period. Yours faithfully, [Your name]
If the LA has decided not to issue a plan, it must tell you by now.
Otherwise, the LA sends consultation papers to the schools you've named, and they have 15 days to reply. Around week 18, check the replies are back and ask for copies.
The EHCP is finalised and you'll receive a copy (without the reports). Check that the support set out in the plan is what was agreed.
Children under compulsory school age can attend part-time.Â
Once your child has an EHCP, you should have an annual review every 6 months whilst your child is under 5. Then annually.
This is your opportunity to:
Join one of our free Facebook groups for the year your child starts, or started, school. Each group brings together families going through the EHCP process at the same time, and the groups stay open after your child starts school, so you can join at any stage.
Print them, keep them with your paperwork, or take them to meetings with your local authority.
A section-by-section guide to the plan, with examples written for children with Down syndrome. It explains why Section F, the support your child must receive, matters most and how to make sure it is specific.
The assessment process in one printable guide, including what to send at each stage and a template email for responding to your draft plan.
Download resource (PDF)A one-page table to note when each step is due and when it happened, so you can spot delays early and chase them.
Download resource (PDF)If you’re ready to start the EHCP process for your child with Down syndrome:
An EHCP can be transformative for your child’s education, providing the legal framework for them to receive the support they need to thrive. While the process can seem daunting, with proper preparation and support, you can secure an EHCP that truly serves your child’s best interests.
Remember: You are your child’s best advocate. Trust your instincts, ask questions, and don’t be afraid to push for what your child needs. Every child with Down syndrome deserves the opportunity to reach their full potential, and an EHCP is often the key to making that happen.
