I think that just maybe we forget to listen carefully to young people living with conditions like Duchenne Muscular Dystrophy. We can fall into two traps.

The fact that they have a severe and progressive disability can mean that we have low expectations about their future. We pop their dreams because we think that they might not be able to get any sort of job or follow a career. For us parent's we don’t want to raise their expectations to see them hurt and disappointed.

Or we do ask them about their future but don't really listen, go through the motions and get them to do courses or training that they don't really like or want to do. Just to keep them occupied.

Planning for the future is really important and is why we strongly believe at Decipha that every young person should have an Education Health and Care Plan. That Plan must begin by listening to the young person and his family about their dreams, aspirations and hopes for the future. Using a wiki is a great place to start. It becomes the bedrock of working out the skills that the young person needs to succeed.

Please watch this video as a brief introduction to person centred planning for Duchenne: