Help Through Services and Support
K-12 Educational Resources
The primary and secondary educational years are a critical part of growing into a successful, happy adult. While faced with challenges that their classmates may not experience, most children with neuromuscular diseases — with proper preparation and relatively simple accommodations — grow up to pursue postsecondary education, have careers, families and contributing roles in their communities. That’s why MDA offers support and information to assist parents of children with neuromuscular disease — and the students themselves — in preparing and advocating for the best education possible. In talking to adults with neuromuscular diseases who grew up and went on to college, graduate school and thriving careers, several key themes arise:
- They were frequently asked what they wanted to be when they grew up.
- Their parents expected them to pursue the same postsecondary education as their non-affected siblings.
- Their teachers held them to high academic standards.
- From an early age, they were included in their annual academic planning meetings (IEP and 504 plan).
- Self-advocacy skills were incorporated into academic plans.
- They joined clubs and extracurricular groups, and built support networks.
Tools and Support
Maintaining communication: Frequent meetings and open communication among teachers, school personnel, students and their families help ensure the school is providing an accessible, rigorous and nurturing academic environment. This is especially important when medication, therapies and medical interventions impact classroom performance or attendance.
Assessing the need for accommodations: MDA can help you think through a variety of important considerations. Can your child safely maneuver from the drop-off area to the building entrance? Can he or she independently enter the building and access all levels of the school? How far apart are your child’s classes? Can a second set of textbooks be kept at home? Is preferential seating needed in the classroom? What is the emergency evacuation plan for your child? Is he or she aware of that plan? How will the school help make field trips equally accessible for your child? Have physical education classes been adapted to your child’s abilities, and has every attempt been made to include him or her in the general P.E. classroom? MDA offers school accommodation recommendations specific to the following neuromuscular diseases:
- Diagnosis: Charcot-Marie-Tooth Disease (CMT)
- Diagnosis: Duchenne Muscular Dystrophy (DMD)
- Diagnosis: Limb-Girdle Muscular Dystrophy (LGMD)
- Diagnosis: Myotonic Dystrophy (DM)
- Diagnosis: Spinal Muscular Atrophy (SMA)
Additionally, MDA offers two tools to help provide additional recommendations for school accommodations and planning ahead:
- MDA’s Educational Recommendations: Plan Ahead
- Recommendations for School Accommodations: Physical and Occupational Therapy
MDA Educational Advocacy Assistance
MDA educational materials: Materials for teachers and parents are available in print and online, including: A Teacher’s Guide to Neuromuscular Diseases and Learning to Live with Neuromuscular Disease: A Message for Parents.
Quest Magazine: The online magazine offers an education category that contains a variety of helpful articles for parents and students, or you can search for content using the keyword search box feature.
MDA webinars: MDA hosts webinars on a variety of topics, including Educational Advocacy for Educational Professionals, Educational Advocacy for MDA Families and The Road to College.
School advocacy resources: Additional resources developed by expert members of the MDA community to help you ensure that your child's school experience is as rigorous and supportive as possible.
Hop-a-Thon: MDA’s Hop-a-Thon is a free, educational program that teaches children, ages 2 to 7, in day care centers, preschools and elementary schools about physical disabilities. The program offers a weeklong disability awareness lesson plan; hands-on activities for the children with books and a video; and other free educational materials.
MDA Young Adult Programs: MDA’s peer-led initiative seeks to create solutions with young adults to exceed limits and unleash their fullest potential through education, employment and beyond. Explore the Young Adult Programs website to learn about helpful resources, important updates and upcoming opportunities.
- Your MDA Care Center
- Young Adult Programs
- Find Support
- Neuromuscular Disease Registry
- Quest Magazine
- The Affordable Care Act