Navigating School Supports with MDA

As the days become longer and the fireflies come out to play, it might be hard to start thinking about the new school year right around the corner.  But when it comes to preparing for your child to have the supports that he or she needs for a fantastic school year, a little bit of planning can certainly go a long way.

Navigating your child’s individual accommodation needs and coordinating with his or her school administration can seem overwhelming, but you don’t have to do it alone! MDA’s Resource Center and Family & Community Support Team are here to offer one-on-one assistance to make accessing school supports much easier.

We offer many resources to guide you, your family, and your school. Our Teacher’s Guide to Neuromuscular Disease helps educators to better understand muscle diseases and their impact on students. We created this booklet to help provide information and support to teachers of students with neuromuscular disease. It is our goal that this booklet will help you to better understand the challenges faced by children and adolescents affected by neuromuscular conditions. This guide suggests general strategies to enhance your student’s school experience both academically and socially, as well as how to address school issues that may arise throughout K-12 education. Should your child’s teacher have any additional questions, our teams are here to help.

We understand that your child’s educational needs may change as they age. Our free, online Access to Education K-12 Workshop offers additional information and insight to help you and your child advocate for his or her needs. This workshop is designed to provide an overview of the common considerations for K-12 educational planning, including 504 plans, Individualized Education Plans (IEPs), planning for outside the classroom, and other transitions in education. This workshop provides a brief overview of education laws that are in place to protect students, as well as what the neuromuscular disease community can expect if there is a dispute with the school. We provide valuable tools and resources to support our families as they advocate for their student’s right to an appropriate education. This self-led workshop is designed so participants can take the full workshop or navigate to a specific area of interest.

For a navigational guide to IEPs, this document may be of additional help.

If your child is living with Duchenne Muscular Dystrophy, Myotonic Muscular Dystrophy, or Spinal Muscular Atrophy, our helpful disease-specific documents and potential personal/educational needs can also be found here on MDA.org. Most materials are also available in Spanish.

Each child’s educational journey and support needs are different. If you’d like to speak with a specialist that can help answer individual questions or provide additional resources for your unique needs, our Resource Specialists are here to serve you every step of the way! The MDA Resource Center is open from 9am-5pm, CST Monday through Friday. They can be reached by calling (800) 572-1717 or emailing ResourceCenter@mdausa.org.

If you haven’t already, we encourage you to visit mda.org for even more information and support for advocating for your child throughout during his or her school years and beyond.  The doors to your child’s education and future are wide open and the world is waiting to see what kind of wonderful things they will bring with them. Through advocacy, educational supports, and encouragement from parents, teachers, and the neuromuscular community – there’s no doubt that your child’s future is bright as the summer sun!