Education Guide for DMD

Education DMD Guidelines are part of the Psychosocial Standard of Care Guidelines published by Duchenne Care and Duchenne UK. Dr Janet Hoskin chaired the working group and edited the recommendations. These guidelines support all children and young people with Duchenne Muscular Dystrophy in Education in the UK.

Volume 3 of the Psychosocial SoC Guideline Recommendations Supporting people with Duchenne muscular dystrophy in School, College and University: a guide for professionals working in education

Authors:

  • Janet Hoskin1,
  • Chloe Geagan2,
  • Rory Conn3,
  • Zoya Alhaswani4,
  • Nick Catlin5,
  • Saul Catlin6,
  • Sam Cornelius-Light6,
  • Jack Ebanks6,
  • Angela Fawcett7,
  • Liam Fitzpatrick6,
  • Adam Kerr2,
  • Benjamin James6,
  • Alex Johnson8,
  • Anna Mayhew9,
  • Sheli Rodney10,
  • Fay Velleman11,
  • Cathy Turner2,
  • Lucy Vers6,
  • Michela Guglieri2,
  • Volker Straub2
  1. University of East London, UK;
  2. John Walton Muscular Dystrophy Research Centre, Newcastle-upon-Tyne, UK;
  3. Devon Partnership Trust, Exeter, UK;
  4. Birmingham Heartlands Hospital, UK;
  5. DECIPHA, London, UK;
  6. Independent Patient Expert by Experience, UK;
  7. Swansea University, UK;
  8. Duchenne UK, London, UK;
  9. Neuromuscular Physiotherapist Consultant, UK;
  10. Duchenne Research Fund, London, UK;
  11. Inclusion Consultant, UK

Foreword

DMD-Care UK is a national project that represents a collaboration between the clinical and patient communities to improve all areas of care for people living with Duchenne muscular dystrophy (DMD) no matter where they are in the UK. It is co-led by the John Walton Muscular Dystrophy Research Centre at Newcastle University and Newcastle Hospitals NHS Trust and Duchenne UK, a leading patient charity. The project is funded by Duchenne UK (DUK), Duchenne Research Fund (DRF) and Joining Jack (JJ) and is embedded in the UK’s NorthStar Clinical Network of Neuromuscular Specialist Centres. Within DMD Care UK, there are multiple working groups (WGs), addressing different areas of care for DMD. This guideline document represents the work of the Education WG, supported by the Psychosocial WG.

Table of Contents

  1. Introduction
  2. What is DMD?
  3. What is a Special Educational Need (SEND)?
  4. The Four Areas of SEND
  5. SEND Categories of need and DMD in more detail
    • Communication and Interaction needs
    • Cognition and Learning needs
    • Social, Emotional and Mental Health needs
    • Physical and Sensory needs
  6. Which Educational Setting?
  7. Working with the Teaching Assistant (TA)
  8. Getting a Plan for Good Educational Outcomes
  9. Education Health and Care Plans (England)
  10. Assessments
  11. Health Care (Section C and G in EHCPs in England)
  12. Social Care (Section D and H in EHCPs in England)
  13. Working with the Family
  14. Talking to Children with DMD about their condition
  15. Transition to Secondary Education
  16. Friendships at Secondary School
  17. Transition to Further Education or Employment
  18. Further Education to University
  19. Summary
  20. Useful Further Reading

Introduction

If you are reading this, you probably have a child or young person with Duchenne muscular dystrophy (DMD) attending your educational setting. It is likely that you have never met a young person with DMD before as there are only around 150 babies born per year in the UK, with the overwhelming majority of these being boys. Currently, most boys with DMD can now expect to live into their thirties. However, with ongoing advancements in research and improved standards of care, life expectancy is improving further, and it is essential to encourage all young people with DMD and their families to plan for all aspects of adulthood.

What is DMD?

DMD is a genetic condition that is caused by a fault on the DMD gene which prevents the dystrophin protein from being made. This protein helps all muscle cells to function properly and without it muscles deteriorate and eventually become replaced by fatty tissue. DMD impacts muscles of movement significantly but also affects a young person’s heart and breathing. Young people with DMD become progressively weaker physically, which affects their ability to walk as they reach their teens. By the age of thirteen years, many young people with DMD will be using a wheelchair full time, and later in their teens they may begin to use night-time ventilation to support their breathing.

What is a Special Educational Need (SEND)?

The SEND Code of Practice (2015) offers guidance for all children in England who have Special Educational Needs and Disability (SEND). However, the aim of this document is to offer advice and support for all children with DMD across the UK.

In England, the SEND Code of Practice (2015) states that a child or young person has SEND if they have a learning difficulty or disability which calls for special educational provision (SEP) to be made for them.

The Four Areas of SEND

In England, there are four broad areas of SEND set out in the SEND Code of Practice, all of which are important to consider:

  1. Communication and Interaction
  2. Cognition and Learning
  3. Social Emotional and Mental Health
  4. Sensory and Physical Needs

SEND Categories of need and DMD in more detail

  1. Communication and Interaction needs: Up to 60% of children with DMD have speech delay or disorder. Autism spectrum condition (ASC) is an established risk which has been reported to affect over 20% of children with DMD.

  2. Cognition and Learning needs: Many young people with DMD experience difficulties with working memory and phonological processing that affect their initial literacy and numeracy acquisition.

  3. Social, Emotional and Mental Health needs: Many young people with DMD may struggle with self-confidence and self-esteem. This could be due to feeling different from their peers.

  4. Physical and Sensory needs: All children with DMD have physical needs due to the nature of their muscle-wasting condition. Educational institutions should use the DMD Care UK Guidelines for Physiotherapists and Occupational Therapists.

Which Educational Setting?

Most children and adults with DMD should be included in their local mainstream nursery primary and secondary schools as well as further education institutions.

Working with the Teaching Assistant (TA)

It is essential that all TAs working with young people with DMD receive training about the condition and the established neurodivergent risks.

Getting a Plan for Good Educational Outcomes

Firstly, it is essential that all schools and colleges have a support plan that has been created in partnership with the young person and their family. Plans are essential to support the young person to develop skills and qualifications for life and/or employment.

Summary

These guidelines aim to support a general understanding of DMD based on the published literature. However, it is important to stress that every person with DMD is unique and it is essential to find out from them what works for them in education. They should be at the centre in all decision making.