Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.
For students who have complex needs, disabilities and/or difficulty with school, there are two traditional options through which families in the United States can seek accommodations and specialized instruction. Both IEPs (Individualized Education Plans) and 504s are provided to students at no cost, but there are some significant differences between these services that may make one or the other a better fit.
For families, the process of securing an IEP or 504 can be confusing, time-consuming and emotional, to say the least. For families of students with a rare disease that impacts learning, this process can involve educating school staff about a disease they’re encountering for the first time. This extensive explaining and clarifying, even under the best of circumstances, can be exhausting and overwhelming for families affected by rare disease.
As just one place to start, we’ve broken down some basic facts and key differences between IEPs and 504s below. Check out our Further Reading section for more detailed information about advocating for students with rare diseases and choosing between plans.
IEPs are provided for by the Individuals with Disabilities Education Act, a federal education law for children with disabilities. There are two main requirements: The child must have one or more of 13 disabilities listed by the IDEA, which include speech or language impairment, intellectual disability, autism and orthopedic impairment, among others. And the disability must affect the child’s ability to benefit from the general education curriculum such that specialized education is necessary.
Families can ask their school district to pay for an independent educational evaluation (IEE) in order to determine a student’s eligibility, though the school district does not have to agree to do so, nor does the district have to honor the conclusions of an evaluation paid for by the family.
The IEP has strict criteria that determine who can participate in the student’s plan. The plan is created by an IEP team, which must include the following: the child’s parent or caregiver, at least one of the student’s general education teachers, at least one special education teacher, a school psychologist or similar specialist and a district representative with authority over special education services. This team must review the IEP plan at least once a year, and the student must be reevaluated every three years to decide whether the plan is still needed.
The IEP is a standardized written document that sets learning goals and outlines the specific services, accommodations and/or modifications that will be provided by the school.
Schools must notify families of any desired change to a student’s services or placement, and parents/caregivers must consent in order for the school to evaluate the child.
The IDEA is designed so that families have several options through which they can resolve disputes that may arise with the school district, which include mediation, due process complaint, resolution session, civil lawsuit, state complaint and lawsuit. An IEP provides for specialized instruction for K-12 students, while a 504 plan can be used through college.
The 504 Plan is named for Section 504 of the Rehabilitation Act of 1973, a federal civil rights law designed to protect people with disabilities from discrimination. In order to qualify for a 504, a student can have any disability, and the law provides a wider definition of disability than the IEP. By the 504 definition, a disability must substantially limit one or more basic life activities, which can include learning, reading, communicating and thinking. Students who don’t qualify for an IEP may be able to qualify for a 504.
The 504 does not allow families to ask for an independent external evaluation, though families can pay for one themselves.
The 504 is less stringent about the members of a student’s 504 plan than the IEP is. Members must be people who are familiar with the child, and who understand the evaluation criteria and the special service options available. This may include the child’s parents/caregivers, teachers (general education and/or special education) and other school district authority figures, like the principal.
Unlike the IEP, the 504 does not need to be a written document, and is not standardized. That said, there are general criteria for a 504 plan’s contents, including the specific services and accommodations to be provided for the student, the names of the people who will provide these services and the name of the person responsible for the plan’s implementation.
As with the IEP, schools must notify families of any desired evaluation and/or changes to a student’s 504, and a parent or caregiver’s consent is required prior to evaluation.
The rules for 504 evaluation vary between states, but generally speaking, plans are reviewed annually, and reevaluations are done as needed.
504 plans ensure that families have options for disagreements that may arise with their schools. These include mediation, alternative dispute resolution, impartial hearing, Complaint to the Office for Civil Rights (or OCR) and lawsuit. Unlike an IEP (which ends after grade 12), a 504 can serve K-12 and college students.
States receive additional funding for students with IEPs, but do not receive additional funds for students with 504 plans. The government can, however, reduce or eliminate funding from schools that don’t meet their legal duty to serve children with disabilities. The plans are not complementary — that is, IDEA funds can’t be used to serve students with existing 504 plans.
Children eligible for a 504 plan or an IEP are entitled by law to a Free, Appropriate Public Education (or FAPE) individualized to the student’s needs, and designed to help the student make appropriate progress.
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List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
Learn MoreWhen you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.
There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
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Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
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