Patient and Parent Support Decipha - Education support We work with Decipha to provide FREE special educational needs support and advice on starting and developing a personal Education Health and Care Plan (EHCP) for young people with DMD. Decipha is a non profit Community Interest Company, run by Nick Catlin and Janet Hoskin. Nick, Janet and their colleagues have a wealth of experience in special educational needs, including DMD, dyslexia and communication difficulties. Decipha offers a range of services which can help your child with their education and social development, including: Decipha assessments – Education and care assessments which recommend the best solutions available DMD assessments – Part of their award-winning ‘Include Duchenne’ project which assesses and improves the reading and writing skills of children with DMD Decipha advice –Specialist advice, training and information and the special educational needs process, including Education Health and Care Plans (EHCPs) Dyslexia assessments – Full range of assessments with a report for special educational needs (SEN) reviews Decipha solutions in school – Which helps children to develop the skills they need to make friends, start conversations and join in with family events Family coaching sessions – Support for parents and siblings, as well as the child with DMD If you need to get started, review a Plan or need specialist educational assessments then please get in touch with Decipha by email [email protected] or visit www.decipha.org. 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. 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. You can read more advice about all of these in our DMD Family Folder. It can all become overwhelming and at times it is 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. Experiences with Decipha from parents: Nick Catlin, Special Needs Advisory Teacher and Director of Decipha, said: “The start of your Education Health and Care (EHC) Plan at school is the chance for you to express your hopes, dreams and aspirations for your son living with Duchenne. It is so important to think about planning for the future by working with your son and school or college to identify the skills and qualifications he will need to succeed. If your son is falling behind his peers it is crucial to get an EHC Plan in place as soon as possible to get the support and interventions in place to help him catch up, gain confidence and build self-esteem. The RoadMap for Life programme, funded by Duchenne UK, has been instrumental in supporting many families living with Duchenne Muscular Dystrophy to plan for a successful future” Kate Tinkler's son Mitchell has Duchenne muscular dystrophy. She recently received support from Decipha, she said: “It was invaluable to have the support of Nick and Decipha when we felt that it was time to begin the process of formalising Mitchell’s care in school and to initiate the application process for an EHC plan. Their expertise and knowledge of Duchenne helped guide discussions around educational and health care needs specific to Mitchell. Having an external Duchenne- specific presence at the meeting really helped navigate this process and meant that our concerns were taken seriously, were supported and more likely to be understood and accepted” You can read more about Kate’s experience with Decipha on our website: https://www.duchenneuk.org/decipha-patient-and-parent-stories Charlotte Wakeling, mother of Felix, has also received support from Decipha. She said: "My son Felix is starting school in September and like most parents, I’m feeling apprehensive, but with Duchenne there are even more worries to consider. I was in touch with Duchenne UK's cofounder Alex about my concerns, and she immediately put me in touch with Nick Catlin at Decipha. Contacting Nick was the best thing I could have done, what an inspirational man! Talking to him really alleviated my worries about Felix starting school and gave me practical advice about the EHC Plan process. Nick was not only able to give advice from a professional point of view, but as a parent too, which I think is so very valuable. Nick is very easy to talk to and has said to contact him at any time, if we need additional advice or even just a chat. This is good to know, and I will be most certainly using Decipha for Felix in the future. I highly recommend any DMD families to seek Nick and Decipha's free support" Alex Clarke, DMD Parent said: We asked Nick for his assistance when drafting and finalising the EHCP for our son Ben in Year 1. The support he gave was absolutely incredible and without him we we would not have had the outcome we did. He took the time to visit the school and meet with his class teacher, the Head and the SENCO, advising what should be included and the obligation the Council have in providing the support required. Numerous emails and telephone calls resulted in the EHCP being approved with funding for a 1-1 Teaching Assistant for Ben. Most importantly, his review of the draft supplied by the Council changed the outcome from 27 measures for Ben to 42 measures to be provided and reported on. His support, guidance and advice was invaluable and I recommend every parent use the services of Nick and Decipha to secure a great future for their child. To get in touch with Decipha visit www.decipha.org or email [email protected] We have given out hundreds of FREE copies of Janet Hoskin book: ‘A Guide to Duchenne Muscular Dystrophy: Information and Advice for Teachers and Parents’ to the Duchenne community. This is a really useful resource which brings together chapters by a range of experts in DMD aimed at supporting young people and their families as they move through school and college. Families can email [email protected] to order a copy. We would like to thank Saul for sharing his knowledge of coding. Please read "Top tips from Saul Catlin for young people living with Duchenne".