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Care and Connection That Matter

Access to care, trusted guidance, and meaningful programs that support individuals and families—every step of the way.

Navigating Education: K-12 and Beyond

Primary and secondary education provides a foundation for lifelong learning, personal growth, and future opportunities. Students with neuromuscular diseases may experience unique barriers along the way, but with individualized support, accommodations, and strong advocacy, they can achieve their educational goals and pursue a wide range of paths, including post-secondary education, careers, family life, and community engagement. That’s why MDA offers resources, information, and guidance to help both parents and students advocate for the learning environment that best meets their needs.

Getting Started

A great way to get started is to view MDA Community Education’s webinar on Navigating Special Education. Learn from a special education advocate how to access services and how to work collaboratively with your child’s education team to build an individualized plan.

Watch On Demand

Individualized Education Plan (IEP) and 504 Plan

An Individualized Education Program (IEP) or 504 Plan typically outlines a student’s individual needs and accommodations. You may ask your child’s school district to evaluate them for eligibility. Download the guide to learn how the plans differ and understand the implementation timeline.

Resources to Share with Educators

MDA’s Teacher’s Guide to Neuromuscular Disease is a great resource to share with educators. It provides a description of neuromuscular diseases, how the disease may impact learning, and practical adaptations they can implement to make their classroom more accessible and inclusive.

MDA also offers a few disease-specific companion materials to share with your child’s teacher along with the Teacher’s Guide:

Occupational and Physical Therapy

Part of your child’s plan may include occupational and/or physical therapy. OT and PT given in an educational setting may look different than therapy in a medical environment. These supportive services are focused on helping your child access their learning environment and may include adaptive seating or assistive devices. Download this educational handout and share it with your child’s education team.

Planning Ahead: Important Considerations Beyond the Classroom

The school environment is more than just the classroom. It also includes the playground, the cafeteria, field trips, and lockers. There are several important considerations you and your child’s education team should discuss such as evacuation plans in case of an emergency and inclusion in school assemblies and sporting events. Download this helpful list of topics to discuss with the team.

Behavior Support for Children with Neuromuscular Diseases

Some neuromuscular diseases can affect behavior and cognition. Dual diagnoses like attention-deficit hyperactivity disorder (ADHD) or autism spectrum disorder (ASD) may be present for some children with neuromuscular disease. Understanding why challenging behaviors occur and how to manage them with positive behavior strategies is important for parents and educators alike.

Transition Planning

By the age of 16, but preferably earlier, your child should be participating in their education plan by attending their IEP or 504 meetings and actively engaging in the discussion. Transition planning considers what the student wants to do after high school and creates a roadmap for getting there – whether that be college, vocational training, employment, and/or living independently. This is an important step in setting the student up for success as an adult. MDA provides a comprehensive Transition Guide with timelines, checklists, and goal setting worksheets to help you and your teen navigate the various aspects of transition including higher education, medical care, finances, and independent living.

MDA’s virtual Next Steps Seminars, offered several times a year, also help families navigate the transition to adulthood through guidance from college and career counselors, medical providers, financial advisors, experienced parents, and young adults.

Contact Us

Navigating your child’s educational needs can be overwhelming. You are not alone. MDA’s Resource Center is available to provide one-on-one support via phone or email. Our MDA specialists can help you figure out where to start, what to consider, and how to advocate for your child in the school setting.

Call: 1-833-ASK-MDA1 (275-6321)

Email: resourcecenter@mdausa.org

Web form: mda.org/care/request-services

Higher Education Resources

When pursuing higher education, there are many factors to consider before you even get to campus. As a student living with a neuromuscular disease there are some extra steps you can take to ensure you have the right support in place. Check out the following resources to help you and your young adult know what to consider and when.

Additional MDA Programs and Supports

MDA College Scholarship Program

This program recognizes students who are making an impact in the neuromuscular community and demonstrate leadership qualities. MDA grants merit-based scholarships each year up to $5,000 each. Applications open early each calendar year. Visit mda.org/scholarship to learn more.

MDA Mentorship Program

For teens and young adults living with a neuromuscular disease, MDA’s month-long, virtual Mentorship Program connects participants with experienced mentors who share insights, guidance, and encouragement around career interests and pursuits. Learn more at mda.org/mentorships.

Quest Media

An innovative adaptive lifestyle platform from MDA, Quest Media covers a wide range of topics relevant to the neuromuscular disease community including navigating education supports. Visit mdaquest.org/tag/education/ to see a library of helpful articles and interviews specific to education.

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