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March 10, 2010
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The Education of Children with Neuromuscular Disease:
A Guide for Teachers and Parents

Jonathan Sandoval, Ph.D. and Kristine Strong, Ph.D.
Revised 2007

School of Education
One Shields Avenue
University of California , Davis
Davis , CA 95616-8579

 

This work was supported by Research and Training Center Grant H133B80016 from the National Institute on Disability and Rehabilitation Research, United States Department of Education.

Copyright 2005, Jonathan Sandoval and Kristine Strong

Table of Contents

Chapter 1: Introduction

Chapter 2: Education Legislation

Trends in the Education of Children with Disabilities

Major Provisions of IDEA

Nondiscriminatory Assessment

Individual Education Plan Development

Due Process

Privacy of Records

Least Restrictive Environment

Discipline under IDEA

Major Provisions of Section 504 of the Rehabilitation Act of 1973

Non-Discrimination

Comparable Education

504 Accommodation Plan

Due Process

Institutional Accessibility

Americans with Disabilities Act of 1990

Conclusion

References

Chapter 3: Creating and Maintaining Family/School Partnerships

Benefits of Family/School Partnerships

Promoting Communication and Collaboration

Promoting Child Involvement

Promoting Parental Involvement

Parent – Teacher Conferences

Educator's Contribution

Parent's Contribution

When Parents and Educators Disagree

Conclusion

Appendix A: Suggestion/Outcome Table for Successful Parent Involvement

Appendix B: Checklist for Parent Teacher Conferences

Appendix C: Parent Teacher Conference Outline

Chapter 4: Academic Equity for Children with NMD

Academic and Environmental Assessment and Accommodation

Valuing Diversity: Inclusive Learning

Accommodations that Promote Success in School

Physical Environment

Medical and Health Issues

Learning Disabilities

Curriculum

Expectations

Assistive Devices

Physical Education

Peer Support

Conclusion

Appendix A: Example of an Individual Education Plan

Appendix B: Example of a 504 Accommodation Plan

Appendix C: Example of an IEP Transition Plan

Appendix D: Example of a Blank 504 Accommodation Plan Form

Appendix E: Mainstreaming Checklist

Appendix F: Yearly Transition Conference

Chapter 5: Addressing Social and Emotional Needs

Promoting Social and Emotional Development

Child Development

Modeling

Outside the Classroom

Adolescent Development

Developing and Promoting Skill Sets

Recognition

Brainstorming: Becoming a Critical Thinker

Active Listening

Networks of Support and Mentorship

Body Image and Other Issues

Body Image

Invisible Disabilities

Pain/Fatigue Management Skills

Managing Care Attendants and/or Assistants

Conclusion

Appendix A: Contact Information for National Organizations and Programs

Chapter 6: Charactreristics and Medical Management of Neuromuscular Disorders

Examples of Neuromuscular Diseases and Prevalence

Table 1. Examples of Childhood Onset Neuromuscular Diseases.
Table 2. Prevalence of Some Neuromuscualr Diseases.

Characteristics of Most Neuromuscular Diseases

Table 3. Effect of Neuromuscular Diseases on Body Systems

Medical Management of NeuromuscularDiseases

References