Guide to Navigating IEPs and 504 Plans for Kids with Neuromuscular Diseases

As someone living with spinal muscular atrophy (SMA), I know how important it is for children with disabilities to have full access to education. With accommodations for my mobility, I took honors and AP classes in high school, then went on to earn a master’s degree at Emerson College. I’m using my education to pursue a career in book publishing.

In United States schools, two options can provide the resources a child with a disability needs to succeed from kindergarten through high school: an Individualized Education Program (IEP) or a 504 plan. Both are meant to support students with disabilities, but in different ways.

What are IEPs and 504 plans?

IEPs and 504 plans spring from two different laws intended to give students with disabilities equal access to education in schools that receive federal funding (generally, all public schools and some charter schools).

IEPs explained

IEPs fall under the Individuals with Disabilities Education Act (IDEA), which was first enacted in 1975 and amended in 2004. It guarantees all students the right to learn and mandates that schools meet the needs of children with disabilities. IEPs often cover a variety of needs beyond basic classroom accommodations and may include specialized instruction, additional supportive services (sometimes including physical, occupational, and speech therapies), and measurable goals. An IEP mainly offers the child more services while holding the school system accountable for providing supportive services.

504 plans explained

504 plans fall under Section 504 of the Rehabilitation Act of 1973, which ensures equal access to public services, including education. It requires schools to provide accommodations and modifications to give children with disabilities equal access to the learning environment. Frequent accommodations that are provided with a 504 plan include environmental adjustments, organizational aids, and extra time for assignments or tests.

Who chooses a plan?

Choosing between an IEP and a 504 plan should be a team decision that involves parents, teachers, school district representatives, and sometimes specialists, such as special education teachers or therapists. The IDEA also states that students should be included in meetings “whenever appropriate.” Parents can help determine when a child is ready to attend or participate in these meetings. Getting them involved early helps build self-advocacy skills.

The process of choosing a plan generally starts with parents requesting an evaluation from the school. The IDEA lists 13 types of disabilities that qualify for an IEP. If the evaluation finds the child is eligible for an IEP, the school is obligated to provide it. If the student is not eligible for an IEP, the team may consider a 504 plan.

A child may qualify for a 504 plan if they have a disability that substantially limits a major life activity, but they do not need specialized instruction.

While IEPs offer more comprehensive services, 504 plans are considered easier to implement, with less stringent documentation and progress tracking requirements.

Quick Guide to IEPs and 504 Plans

	IEP	504 Plan
What is it?	An IEP is a plan to meet a child’s education needs in the “least restrictive environment.” It is covered by the Individuals with Disabilities Education Act (IDEA).	Named after Section 504 of the federal Rehabilitation Act of 1973, a civil rights law, 504 plans ensure equal access to education for students with disabilities.
Who qualifies?	IDEA lists 13 specific conditions that qualify. A school-funded evaluation determines whether special education services are needed. States decide if children who need only related services (like occupational or physical therapy) qualify for specialized services.	Section 504 defines a person with a disability as “any person who has a physical or mental impairment which substantially limits one or more major life activities, has a record of such an impairment, or is regarded as having such an impairment.”
What does the plan cover?	IEPs address specialized instruction, academic adaptations, technological equipment, physical assistance, and related services like occupational, physical and speech therapy.	504 plans address all the same areas as IEPs, with the exception of specialized instruction.
Who creates the plan?	The team includes parents, teachers, administrators, and experts in different areas. The IEP team must meet at least once a year. Changes cannot be made to the plan without the parents’ OK.	504 plans don’t have to be written documents, nor are parents required to be part of the decision-making process; however, parents typically help create and monitor the plan, and schools usually create a written 504 plan.

How IEPs and 504 plans work in real-world examples

A few real-world examples (including mine) will help illustrate how these plans work in different situations.

Jessica Hubbard, Manager of Community Education at MDA, has been on both sides of the process. She was an elementary school teacher before her son, Deacon, was diagnosed with Duchenne muscular dystrophy (DMD).

“We requested a 504/IEP meeting when we enrolled Deacon in kindergarten. I provided documentation to the school prior to the meeting detailing his diagnosis. During the meeting, we discussed supports and accommodations needed, as well as the best ways to implement certain supports,” Jessica says.

Deacon is still ambulatory but has trouble with stairs and getting up from the floor. He was provided with a 504 plan that includes assistance taking an elevator to classes on the second floor, classroom placement close to the elevator and restrooms, having a chair available to avoid sitting on the floor, occupational and physical therapy (OT and PT) provided by the school, specific tools (scissors, pencils, electronic devices) to help him with his work, modified physical education (PE), frequent breaks as needed, and a special emergency exit plan.

“We were focused on reducing barriers Deacon may have in the classroom and school building,” Jessica says. If his needs become more extensive (such as speech therapy, specialized instruction, or behavioral supports), Jessica will request an IEP plan evaluation.

Lily Sander, a high school senior and MDA National Ambassador who was diagnosed with Charcot-Marie-Tooth disease (CMT) at the age of 4, has a 504 plan, too. She is ambulatory, but she uses a wheelchair for longer distances. She has hand weakness, so her plan gives her access to her teachers’ notes. She does schoolwork on her laptop and uses a text-to-speech program when needed. She also works with her school’s PT and OT to maintain her current level of function.

When I was in the public school system, I needed atypical accommodations, so I had an IEP. I was highly susceptible to catching illnesses that resulted in hospitalization, so my IEP allowed me to learn remotely from home before this was common.

When I was in elementary and middle school, I had a live feed from my classroom on a television in my house. In high school, I was upgraded to a robot that I could control remotely to navigate the school. Additionally, every school day, I had paraprofessionals come to my house to sit with me and help me with fine motor skill activities, and they delivered my schoolwork back to the appropriate teachers. I also received PT and speech therapy through the school system, and the therapists would come to my home every week.

It is important to note that no IEP or 504 plan is or should be one-size-fits-all. It should be catered to the child’s specific needs.

Advocating for your child

Anyone with a disability — particularly in the neuromuscular community — is well aware of the role advocacy can play in gaining equal access to opportunities. Navigating school systems is a unique type of advocacy challenge. Schools are often pressured to cut spending costs, but those cuts can come at a price. (Learn how MDA is championing education policies that support students with disabilities in Understanding MDA Advocacy’s Education Policy Efforts.)

Tala Rifai experienced this firsthand with her 12-year-old daughter, Celine, who was diagnosed with congenital muscular dystrophy (CMD) at 1 year old. At her elementary school in Pennsylvania, Celine had an IEP that allowed her to receive many services, including PT and OT, through the school. When the family moved to Maryland in 2022, her new school performed an evaluation and determined she was not eligible for an IEP. They provided a 504 plan, and the school does not provide PT or OT.

“I tried hard to push for her to switch back to an IEP plan, but there was a big pushback from the school district,” Tala says. She even consulted with a legal service, but the school district has not yet changed its decision.

Fortunately, the faculty at Celine’s school has been accommodating and provides most of the day-to-day support she needs. Celine has a teacher aide who works with her one-on-one for most of the school day, extra time on tests, and access to a private space to take tests. Her new PE teacher has gone out of his way to include Celine in class activities. But because she is no longer provided with PT and OT through the school, it has now fallen to Tala to help her with exercises to preserve her mobility.

Teaching self-advocacy

As most parents would, Tala would go to the ends of the earth to advocate for her daughter’s needs. I witnessed that same fierce, unconditional love in the battles my mom waged when my school attempted to cut something from my IEP.

Watching my mom lead every IEP meeting with courage and kindness — on most occasions, she would bake something and bring it into the meeting to butter everyone up — helped me learn strategies to advocate for myself. The key to helping kids gain that courage is to start early. (Find tips for teaching self-advocacy in Raising Resilient Kids with Neuromuscular Diseases.)

In a Quest Blog post (Life with Lily: The Right to Access My Education Fully), Lily recalled a day in middle school when her mother told her she was old enough to advocate for herself in her 504 meeting. “That moment changed me,” she wrote.

From that day on, Lily’s mom encouraged her to explain her own needs and speak up when something wasn’t accessible to her. At first, Lily felt unsure and nervous, but with support and practice, she gained confidence. Over time, Lily learned to embrace open dialogue with her school.

“If I have a problem, I send an email to my 504 plan coordinator, and we brainstorm,” Lily says. “We meet yearly just to go over everything and make sure my needs are being met.”

Lily is motivated to practice self-advocacy because she sees that the benefits go beyond herself. By speaking up, she is not just removing a barrier to her own education — she is creating the possibility of change for other students.

Joanna Buoniconti is a freelance writer living with spinal muscular atrophy (SMA) in Western Massachusetts.

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How to Challenge a Decision

Parents have several dispute-resolution options under IDEA (and similar rights under Section 504).

1. Request an IEP evaluation or reevaluation

Parents can:

• Submit a written request for evaluation
• Ask the school to determine IDEA eligibility

The school must:

• Respond within a legally defined timeline
• Either agree and evaluate, or refuse and provide an explanation in writing

2. Request an Independent Educational Evaluation (IEE)

If parents disagree with the school’s evaluation, they can request an IEE at public expense.

The school must either:

• Fund the IEE, or
• File for due process to defend its evaluation

3. File a state complaint

Parents can file a complaint with the state education agency if the school:

• Failed to provide comparable services after transfer
• Did not follow IDEA procedures
• Improperly terminated an IEP

A complaint should:

• Trigger a written investigation by the state
• Be resolved within 60 days
• Provide a result that may include corrective action by the school