Managing Duchenneat school, college and university
Education is for everyone. Planning ahead and knowing your rights makes a big difference. Here is what help is available and how to get it.
It has been established that many young people with Duchenne can struggle at school and may experience a range of neuro-divergent conditions such as dyslexia, Autism Spectrum Condition or Attention Deficit Disorder (ADHD).
However, this doesn't mean they can't achieve in their learning. With the right help from school and college young people with Duchenne must be empowered to identify their future dreams and be supported to achieve them.
Top tips
Share early
Share what is needed early. This helps staff plan support.
Applications
Ask for application forms in accessible formats if needed.
Adjustments
Never assume adjustments will be automatic - request them.
Open days
Use open days to check accessibility and meet support teams.
Planning ahead
Start conversations early. Talk to your school or college about what your child, or you if you have Duchenne, will need before term begins.
Make a list of what helps your child, or you in you have Duchenne, learn best - such as extra time, assistive technology or accessible classrooms. This will guide discussions.
If you’re applying to university, contact disability support teams before you apply. Ask about their services and visit on open days.
Support you can get
In school
The teachers and Special Educational Needs Coordinator (SENCO) can work with you on creating a supportive environment for your child:
- Talk to them about an Education Health Care Plan (EHCP) if you live in England, or similar support plans if you live in Northern Ireland, Scotland or Wales
- Work with them on planning for adapted PE and safe participation in activities
- Encourage your child to take part in social activites
Depending on what you need help with, you might be able to get:
- Extra time for exams
- Help with note-taking
- Accessible classrooms
In college and university
Depending on what you need help with, you might be able to get:
- Lecture notes and materials in advance
- Course content in alternative formats like large print or audio
- Assistive technology such as screen readers or speech-to-text software
- Accessible accommodation and quiet spaces for rest
- One-to-one support or a mentor for study skills and wellbeing
Financial help
- If you’re in higher education, you may be eligible for Disabled Students’ Allowance (DSA). This can pay for specialist equipment, software and support workers.
- Apply early—processing can take time.
Who you can contact
- Disabled Students Helpline (Disability Rights UK): Advice on education, training and adjustments. Call 0330 995 0414.
- University Disability Advisers: They arrange your support and adjustments.
- Scope: Guidance on reasonable adjustments and your rights.
Understanding your rights
Under the Equality Act 2010, schools, colleges and universities must make reasonable adjustments so you can access learning like everyone else. This includes physical access, teaching methods and exams.
Reasonable adjustments can include changes to the environment, extra time for tasks, or specialist equipment.
Guidance for educators working with people with Duchenne
We recommend sharing this guide with those involved in you or your child's education. It explains the educational, cognitive, social and physical needs linked with Duchenne, and how to create inclusive, aspirational learning environments.
The guidelines have been written by Dr Janet Hoskin, Associate Professor of Education at the University of East London, with the support and input of the Duchenne Care UK working group for education.
Duchenne UK funds Decipha CIC to give free support and advice for Duchenne families. Decipha CIC is run by parent and special educational needs and disability (SEND) specialist, Nick Catlin. It delivers advice and assessment for young people with Duchenne, and training for their schools or colleges.
Contact Decipha for advice and support
Funded by Duchenne UK, Decipha gives people with Duchenne and their families assessments, guidance, and interventions to address learning, behavioral, and social-emotional needs.
