Road Map for Life Programme

for Duchenne Muscular Dystrophy supported and funded by Duchenne UK

Decipha have successfully developed RoadMap for Life person centred planning, assessments, reports and training that can help to identify key outcomes required for Education Health and Care Plans for young people living with Duchenne Muscular Dystrophy.

We know that with Duchenne there is a high risk of specific learning and behaviour problems that if not identified can lead to young people falling behind their peers at school and in some cases leave unrecognised social, emotional and communication problems.

We work face to face with families and offer a range of assessments and support. In some cases this might involve training at school or some advice or support over the phone. In others cases families require a full assessment followed up by detailed reports and recommendations towards Education Health and Care Plans.

The Decipha RoadMap for Life  programme consists of the following options:

1. Support for the family over the phone and by email that can help to find immediate solutions to problems facing the young person at home and in school
2. Person Centred Planning session at school with the young person, parents and school staff. This aims to discuss what is working well and build upon good practice. It covers all aspects of the young persons life plan including Employment, Education and Learning, Health, Relationships and Community, Independent Living
3. An assessment of the young person’s basic skills using normed testing including reading, spelling, maths, vocabulary and working memory
4. An assessment of the young persons social, communication and emotional skills
5. A review of current interventions used in school or college and home with recommendations for best practice based on our research
6. Feedback to parents, young people and school or college staff following assessments through phone calls and email
7. A full report including detailed SMART Outcomes sent to parents and school SENCO
8. The opportunity to have a training session at school on Duchenne and its implications for learning and behaviour
9. Opportunity for a follow up review meeting usually 6 months to a year after the assessment.

If you would like to register for the programme then please complete the form below:

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