School accommodation for children with DMD is usually managed through an IEP or 504 Plan. The focus is generally on accessibility, energy conservation, and academic support.
“A child can receive extra assistance in class, modifications to the school environment to improve access and participation, and accommodations to enhance learning based on the child’s deficits,” says Dr. Aguirre. “For a child with DMD, this might look like more frequent rest breaks during class, desk modifications for improved posture, and talk-to-text technology to limit fatigue. But the child still gets to be part of a ‘typical’ classroom setting.”
- Whether the child must climb stairs to get to class
- If hallways or doorways are too narrow for a wheelchair or scooter
- If there are ramps and automatic door openers
- If the school has an elevator
- If there is adaptive furniture available (adjustable desks or chairs with supportive seats)
You should also discuss emergency plans with school staff to ensure your child has help during an evacuation or drill.
The type of accommodation you request will vary depending on the child’s needs. But fatigue is one of the major challenges of DMD. “It’s not just ‘tired,’ it’s energy that runs out faster than the schedule allows,” says Lightner. “So we’re talking about shorter days on occasion, built-in rest breaks, flexibility with assignments, and not punishing a kid because their body tapped out before the worksheet did.”
- Specific seat location in the classroom
- Modified gym activities
- Adaptive technology (such as speech-to-text)
- Trained aides
- Speech/language therapy
- Specialized transportation
Collaboration With Education and Healthcare Teams
Communication between the school and care team can help the school understand what physical limitations your child may be experiencing and give the school important information on how DMD overall is affecting your child.
“As an outpatient-based physical therapist involved in many of my patient’s IEP meetings, I recommend that parents advocate for their child’s school team and healthcare team to be in frequent communication with one another,” says Aquirre. “Especially if the student is receiving therapy in and outside of school, those therapists should be communicating to collaborate on student goals and optimize the student’s outcomes.”
