Educational support

Some children and young people with DMD have associated learning and behavioural difficulties and need additional help at school. We partner with education experts Decipha to fund free educational support to families.

What kind of support might my child need?

All children and young people with DMD should have an Education Health and Care Plan (ECHP). EHCPs are documents which set out the education, healthcare and social needs of a child or young person aged 0 – 25.  

Early intervention is always best, so if a young person appears to have any difficulties it’s very important that you talk to the SENCO at nursery or school, or to your GP about referral to a professional.  

Although all people with DMD are unique, delays and/or differences in the following areas are common:   

Joey and mum doing homework

How to get support

We fund free education support for young people with DMD through our partners, Decipha. Decipha is a Community Interest Company run by DMD parents with a wealth of experience in Special Educational Needs (SEN).

They offer a range of services to help your child with their education and social development, including:

  • Decipha assessments – Education and care assessments which recommend the best solutions available
  • DMD assessments – Part of their award-winning ‘Include Duchenne’ project which assesses and improves the reading and writing skills of children with DMD
  • Decipha advice –Specialist advice, training and information and the special educational needs process, including Education Health and Care Plans (EHCPs)
  • Dyslexia assessments – Full range of assessments with a report for SEN reviews
  • Decipha solutions in school – This helps children to develop the skills they need to make friends, start conversations and join in with family events
  • Family coaching sessions – Support for parents and siblings, as well as the child with DMD

What parents say

“It was invaluable to have the support of Nick and Decipha when we felt that it was time to begin the process of formalising Mitchell’s care in school and to initiate the application process for an EHC plan. Their expertise and knowledge of Duchenne helped guide discussions around educational and health care needs specific to Mitchell.

Having an external Duchenne-specific presence at the meeting really helped navigate this process and meant that our concerns were taken seriously, were supported and more likely to be understood and accepted”

Kate, DMD parent

Visit Decipha's website

Duchenne Muscular Dystrophy: Information and Advice for Teachers and Parents

Order a Guide to Duchenne Muscular Dystrophy: Information and Advice for Teachers and Parents Edited by Janet Hoskin

If you are not a parent/caregiver, teacher or healthcare professional, please get in touch with us at [email protected].
Please note we can only post books within the UK.
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DMD families can order 1 free copy of the Guide to Duchenne Muscular Dystrophy: Information and Advice for Teachers and Parents. If you are a healthcare professional you can purchase this via amazon: https://www.amazon.co.uk/Guide-Duchenne-Muscular-Dystrophy-Information/dp/1785921657
If a child is currently taking steroids, you may like to order a steroid alert wristband. It is designed to alert people that the wearer is steroid dependent and may need to be given steroids if they become unwell.

DMD Guide for teachers

If your child is just starting or moving schools, share our guide with your child’s teachers so that staff are fully prepared to support a pupil with DMD. 

Our resources

A mother and boy hugging A mother and boy hugging

Help at diagnosis

We have a series of resources available to help you when a loved one is diagnosed with DMD.

Diagnosis resources Diagnosis resources
A boy with DMD and his brother A boy with DMD and his brother

Help with your teenager

As children with DMD grow older, their needs change. We provide guidance for families with teenagers.

Support for your teenager Support for your teenager
Duchenne UK Steroid wristbands Duchenne UK Steroid wristbands

Prepare for emergencies

Read our essential guide to preparing for accidents and emergencies when your child has DMD.

Emergency support Emergency support