Inclusive education for children with muscle-wasting conditions


Muscular Dystrophy UK announced the availability of an informative, helpful and comprehensive guide and hopes it will continue to empower schools and parents to improve the lives and educational experiences of pupils with muscle-wasting conditions, enabling them to reach their full potential.

Photo: Pupils in the classroom; Copyright:

Inclusive education is important for pupils, partens and schools as well; ©

"Our youngest son Harry has SMA type 3. We had many difficulties with secondary transfer relating to funding for necessary adaptations. This had a huge effect on our family. Muscular Dystrophy UK were amazing throughout our fight. They offered support, advice and they were always there throughout the process. We were lucky to have a positive outcome. We’re so grateful Muscular Dystrophy UK has these comprehensive guidelines to help families like ours. I don’t know how we would have overcome all the hurdles we faced without this support." – Joanne.

Schools can only be truly inclusive, for children with a disability, when they have the knowledge to start with, as well as the continuing health and social care support and advice as the child’s needs change. It is however a partnership with everyone working together, putting the health and wellbeing of the child at the centre, and schools find themselves floundering if that continued support isn’t there. That includes the co-operation and support from the family which is key.

This document is full of useful information for both parents and schools. It covers a range of topics and is full of important links to agencies that are there to help with every aspect of care, without bombarding students and parents with too much information in one go. Students and their families need to know there is support that they can easily access; this guide does that.

"Since the Statement system has changed to an Education Health and Care Plan (EHCP, in Northern Ireland SEN Statement, and in Scotland, a Co-ordinated Support Plan), we are hoping that this will give students the support they need to carry on to further education at both college and university. Parents are made aware in these guidelines that these plans are available for their children." – Lesley Fereday, Student Needs Officer in the West Midlands.

Every student’s needs are different and just because they may have the same diagnoses, their conditions can vary so much. The checklists and questions to ask will be very useful for parents viewing schools and colleges. It raises questions that unless you work in education you may not think about. These guidelines will provide a great source of information.; Source: Muscular dystrophy UK

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