EHCPs: A Guide for SMS Parents and Carers

Navigating the Education, Health, and Care Plan (EHCP) process can be confusing and frustrating—especially if you’re caring for a child with Smith-Magenis Syndrome (SMS). The legal language, inconsistent support from local authorities, and endless paperwork often leave families overwhelmed.

That’s why we’ve created a clear, practical, and parent-informed guide:
“Smith-Magenis Syndrome and EHC Plans: A Guide for Parents and Carers.”

Who Wrote the Guide?

This resource was written by Jack Medlin, Annette Benstead, and Natasha Craven, with insights from families who have walked this path. It reflects real experiences, legal expertise, and the collective knowledge of our community.

This free downloadable PDF is designed to empower you with the knowledge, tools, and confidence to secure the right support for your child.

Why This Guide Matters

SMS brings with it a unique profile of learning, medical, and behavioural challenges. From language and communication delays to self-injurious behaviour, sleep disruption, and complex sensory needs, children and young people with SMS require thoughtful, tailored educational support.

Yet many parents find themselves battling vague, generic EHCPs that do not reflect their child’s day-to-day reality.

As the guide explains:

“When considering the needs of your child or young person, you may want to consider their whole school day and the minute-by-minute support they may need—from finding the way to their classroom and unzipping their coat, all the way to leaving at the end of the day.”

This guide walks you through how to ensure those minute-by-minute needs are properly assessed, specified, and enforced within the EHCP.

What You’ll Learn

This guide is rich in information. It includes:

✅ Understanding the Legal Framework

“Judge Jacobs stated: ‘The issue at the initial stage is a provisional and predictive one; it is only when an assessment has been made that a definitive decision has to be made.’”

Learn how the Children and Families Act 2014 and the SEND Code of Practice shape EHCPs—and what local authorities must do by law.

In other words: you don’t need to prove everything up front. The law is clear that you don’t need a formal diagnosis or professional reports before requesting an assessment.

✅ How to Request an EHC Needs Assessment

Confused by who can make a request? Don’t worry—the guide breaks it down clearly, with links to IPSEA’s template letters to get you started.

“It is only the child’s parent, a young person over 16, or an educational setting acting with consent that can open up the right of appeal to the SEND Tribunal if the local authority refuses to assess.”

✅ Breaking Down the EHCP Sections

Each EHCP must follow a legally required format. This guide explains every section (A–K), with special focus on:

• Section B: Special educational needs
• Section F: Special educational provision
• Section I: School placement

And it offers examples of strong, enforceable wording—not the vague phrases that many local authorities try to sneak in.

❌ “Access to a social use of language programme…”
✅ “X will receive a 30-minute session twice a week… delivered by a teaching assistant trained by a Speech and Language Therapist.”

This level of specificity matters—vague wording means vague support.

✅ What SMS-Specific Needs Should Be Included?

The guide contains an extensive list of educational, health, and care needs specifically associated with Smith-Magenis Syndrome—ideal for planning Sections B, C, and D of the EHCP.

“Although most children and young people with SMS are extremely social… their relationships with peers may be restricted due to limited language abilities and understanding of what is appropriate within certain contexts.”

Other SMS topics include:

• Language and communication difficulties
• Working memory and attention deficits
• Sleep disruptions due to inverted circadian rhythm
• Over-affectionate behaviour and difficulties with boundaries
• Self-injurious or aggressive outbursts when overwhelmed
• Mobility challenges and chronic ear infections
• Compulsive eating and hunger-related distraction

Who This Guide Is For

• Parents and carers of children with SMS
• SENCOs and education professionals who want to better understand SMS
• Anyone feeling lost in the complex world of SEND legislation

With thanks to the National Lottery Community Fund for supporting our Education Programme