Duchenne Muscular Dystrophy is a complex and progressive condition. As a family you will have many medical, education and social care assessments. You will be faced with choices about school, Further Education, adaptations to your home, mobility equipment, clinical trials and more. It can all become overwhelming and at times its easy to forget exactly what you and your family really need right now to help you or your young person to have the best possible quality of life and opportunities for the future.

You need a Plan - A RoadMap for Life. Remember no two young people with Duchenne are the same.

At Duchenne UK we have teamed up with Decipha a non profit Community Interest Company and Janet Hoskin and Nick Catlin to provide special educational needs support and advice on starting and developing your own personal Education Health and Care Plan. These are now replacing Special Needs statements in England but provide a very useful framework for other countries in the UK.

The Plan from 0-25yrs years must:

  • start with a discussion with the young person or adult about their dreams, aspirations and their achievements. What skills do I need develop to get to where I want to go? Its a good idea to ask the young person or adult to give a presentation or use a Wiki that is “All about Me”
  • include assessments for special educational needs, employment, medical and health needs, social care and independent living by professionals. Identify the skills that the young person or adult needs to develop to get to where he wants to go. What support or personal/social care does the young person or adult need? How and where will the best medical care be delivered?
  • identify the costs of provision that needs to made and who will deliver and evaluate agreed outcomes
  • be reviewed and outcomes updated at least once a year

If you need to get started, review a Plan or need specialist educational assessments then please email [email protected] and we will pass your details to Decipha.

They will contact you by phone and email to discuss how they can support you and your family. Duchenne UK is providing this service  FREE of charge to young people, adults and their families who are living with Duchenne.