EHCP for a Child with Down Syndrome

Updated 4 July 2026 · Legal citations verified against legislation.gov.uk

Parents of children with Down syndrome often meet the SEND system earlier than anyone else, sometimes within weeks of birth, and are then surprised to discover that a clear, lifelong diagnosis still does not make the paperwork happen by itself. Nobody sends you an EHC plan automatically. You have to ask, and how you ask shapes everything that follows: the assessment, the provision and, above all, the ambitions written into the plan. This guide covers the request, the evidence that works for younger children and the parts of the eventual plan worth fighting hardest over.

How Down syndrome typically presents at school and at home

Children with Down syndrome usually learn well but differently: new concepts need more repetition, more visual support and smaller steps than the standard classroom provides. Spoken language typically develops more slowly than understanding, so your child may know far more than they can say, and be marked down for it. Instructions delivered once, verbally, to a whole class often sail past. Many children are sociable and eager to join in, which can disguise how little of the lesson content is actually landing; a happy child colouring quietly in the corner can be a child learning nothing.

Home tells its own story. You may see words and signs used confidently in the kitchen that never appear at school, or the reverse: skills the school reports as secure that vanish without a familiar adult prompting each step. Eating, dressing, toileting and road safety may need teaching that other children never require. Hearing and vision fluctuate for many children with Down syndrome, and glue ear in particular can knock language development sideways for months. All of this is relevant to the assessment, and you are the only witness to most of it.

Two Code of Practice areas at once

The SEND Code of Practice sorts needs into four broad areas, and Down syndrome typically spans at least two of them: cognition and learning, because concepts need structured, well-paced teaching, and communication and interaction, because speech and language are usually affected. Hearing needs may add the sensory and/or physical area too. Say this explicitly in your request. The areas you identify steer which professionals contribute advice, and a request framed only around learning can produce an assessment that never properly examines communication.

The section 36(8) test: low by design

The council must carry out an assessment where the child has or may have special educational needs and it may be necessary for special educational provision to be made through an EHC plan (section 36(8) of the Children and Families Act 2014). For a child with Down syndrome, the first limb is effectively settled by the diagnosis. The second limb asks only whether a plan may be necessary, and where a child needs differentiated teaching, therapy input and structured support across years of education, denying even the possibility is close to unarguable. Councils sometimes suggest waiting to see how nursery or reception goes. The threshold does not require waiting for anything; it requires a decision within 6 weeks.

Milestones are evidence: building the case for a young child

Paragraph 9.14 of the SEND Code of Practice sets out what councils should consider when deciding whether to assess, and for children below school age the emphasis falls naturally on physical, emotional and social development rather than attainment data. That means the record you already have is your evidence base:

• The red book and health visitor reviews showing when milestones were reached: sitting, walking, first words, first signs
• Portage or early years support notes, with what was worked on and how long each step took
• Paediatrician letters, including anything about hearing, vision, heart or thyroid checks that affects learning
• Speech and language therapy reports, session frequency and targets
• Nursery observations: how your child manages transitions, group time and self care compared with what the setting provides for other children
• Your own dated notes on communication at home, including signing, and skills that need adult prompting

Under regulation 7(b) of the SEND Regulations 2014 the council must consider information you supply, so send it all. For the enclosure that ties it together, our guide to writing parental views shows how to turn family knowledge into assessment evidence.

Use regulation 6(1) to bring the right experts in

During the assessment the council must seek advice from you, the education setting, an educational psychologist and health and social care, plus any person you reasonably request (regulation 6(1)). For a child with Down syndrome, put these names in writing:

• A speech and language therapist, since communication advice underpins half the plan you want
• The community paediatrician who knows your child
• An occupational therapist, where fine motor skills, feeding or self care need work
• The audiology service, if hearing fluctuates
• Portage or the early years specialist teacher, for a child not yet at school

Section E: where ambition lives or dies

When a plan is issued, section E holds the outcomes everything else works towards and section F holds the provision that must deliver them, enforceable against the council under section 42. Here is the hard truth: children with Down syndrome are the group most often handed outcomes soaked in low expectations. "Will enjoy school." "Will tolerate group activities." Those are not outcomes; they are shrugs. Insist on outcomes about reading, communication that strangers can understand, independence in daily routines and real participation, then check that section F provision is specific and quantified enough to get there. The law and the Code require provision to be detailed and specific, and vague plans follow vague outcomes. Our guide to what good section F provision looks like shows the standard to hold out for.

Brush-offs to expect and reject

"We do not assess before school age" is flatly wrong; the framework runs from birth. "The nursery is meeting his needs, so there is no need for a plan" prejudges the exact question the assessment exists to investigate. "Children with Down syndrome go through our inclusion pathway first" is a queueing system with no basis in section 36(8), and any rule applied to every child in a category regardless of individual circumstances is an unlawful blanket policy. A refusal must come within 6 weeks with appeal rights and mediation information (regulations 5(1) and 5(3)), and it can be appealed on form SEND35A.

Frequently asked questions