Support with education

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:

Speech and language

Literacy and numeracy

Social communication and interaction

Self-regulation

Mental health difficulties

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

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