Include Duchenne - a project to help our children succeed at school
Breaking News...Action Duchenne has won a total of £500,000 of funding from Children in Need and the Big Lottery Fund to set up an exciting new education project aimed at enabling boys with Duchenne to succeed in school. The project will also form part of a research project with the Centre for Child Research at the University of Wales, Swansea.
Remember - Duchenne is not just a physical condition it is a NEURO-muscular disease. This means that boys with Duchenne are at high risk of experiencing learning and/or behaviour problems. These can vary from mild forms of dyslexia and early reading problems to severe forms of autism or Attention Deficit Hyperactivity Disorder.
The aim of the 'Include Duchenne Project' is to enable boys with Duchenne to have more opportunities at school by ensuring they receive appropriate assessment and interventions. This way we believe boys will have more 'life opportunities'.
What will the 'Include Duchenne' Project entail?
60 boys with DMD will receive assessments from specialist dyslexia teachers. From these assessments the Include Duchenne Project Manager will design a personalised literacy intervention programme.
The key aspect of this programme is that it will be taught both at home by parents, and at school by teachers or assistants. Each family and school will have a log-in to the Include Duchenne web-site where they will be able to access the assessment information of their particular child only. After receiving initial training from specialist staff, parents and learning assisstants will follow the intervention programme on their private area of the web-site which will include resources and materials to use as well as instructions.
Who can take part in the project?
Include Duchenne is aimed at young people with Duchenne across the country and will include families in England, Scotland, Wales and Ireland. Initially it will be aimed at aged 6-11year olds.
When will the project start?
Families on the DMD Registry will receive information about Include Duchenne over the next two months. Children will receive assessments from May - December and will start the intervention early in 2009.
How will the project be monitored?
The Include Duchenne Manager will be in communication with you and school via your personal area on the Include Duchenne web-site. You will be asked to feed back information to her and she will guide you through the various learning modules. There will also be regional workshops for parents and learning assistants where various issues can be discussed as well as training given. Children's progress will be assessed at various intervals to gauge appropriateness and benefit of the programme.
Are we only assessing literacy skills?
The young people who take part will initally be assessed for I.Q., literacy and arithmetic, phonological ability (sound discrimination and manipulation) and some aspects of speech/language. The young people themselves will fill out a questionnaire on their self-esteem, and parents will complete a behaviour and learning questonnaire. After this, participants will be re-assessed on their literacy and self-esteem and parents and schools will have the opportunity to report on behaviour and learning progress.
What to do now...
If you would like to take part in the Include Duchenne project you can contact me directly at janet@actionduchenne.org