Many school-aged children and teenagers with Duchenne muscular dystrophy (DMD) have an Individualized Education Program (IEP). This personalized plan paves the way for your child to receive extra support for the cognitive, physical and emotional challenges of going to school and growing up with Duchenne. Setting up an IEP involves many steps and the help of many different individuals — but the extra support for your child can be worth it.
What is an IEP?
Any student with DMD or other disability who is attending a public school is eligible for an IEP. An IEP is a legal document created in collaboration with a team of health and education professionals and the child’s parents. It is a customized education plan designed to address the unique needs of a child living with a disability. It also helps teachers and parents by creating a structure around the student’s needs. It is reviewed each school year, and it can be revised if necessary.
In students with DMD, managing mobility issues while encouraging a child’s independence is a common goal of an IEP. An IEP might also focus on support for learning difficulties, such as speech and language delays, or behavioral challenges, such as having less control of emotions.
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How is an IEP created?
A child is eligible for an IEP if they are identified as having a disability under the Individuals with Disabilities Education Act, or IDEA. This evaluation, called an Independent Education Evaluation (IEE), determines whether or not a child is eligible for special education and related services and is an essential preliminary step before requesting an IEP.
Once a child is confirmed as a “child with a disability,” an evaluation for an IEP can be initiated. The contents of the IEP needs to contain information on current performance based on classroom tests and other evaluations, to identify the strengths and weaknesses of the child with DMD. This will help define annual goals that will be monitored and reported on in regular progress reports. Special education and related services to be made available to the child are also defined in an IEP.
Who is involved in the creation of an IEP?
The successful implementation of an IEP requires smooth communication between school and family. The number of people who contribute to an IEP can be large — the law stipulates that IEP team members include the following:
- The student (if appropriate)
- Parents
- A regular education teacher
- A special education teacher
- A representative of the school system
- Someone who can interpret evaluation results
- Someone who knows the child well
- A transition services agency representative
Each member is key to ensuring that all aspects of the child’s needs are taken into consideration when establishing the IEP and implementing it throughout the school year.
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