navigating the ibd journey creating a 504 plan for your child

Perhaps your child has missed several days of school. Maybe your child has even missed weeks of school due to being unwell or hospitalized. Your child may complain about feeling ill or frequently needing to use the bathroom during the school day. Maybe he or she has even had an accident or other embarrassing situation occur while at school. Or perhaps none of this has happened yet, but your child is anxious that something will happen. The anxiety may be impeding academic success or hindering relationships with peers and teachers. Any of this sound familiar? School can be a challenging environment for a child diagnosed with IBD. A 504 plan may be able to alleviate some of the burden.

What is a 504 Plan?

The name “504 Plan” is derived from Section 504 of the Rehabilitation Act of 1973, a federal civil rights law. This law allows for students with disabilities impairing at least one major life activity to receive the same level of education and opportunities as students without disabilities. In the case of irritable bowel disease, going to the bathroom/toileting is the major life activity that is affected. A 504 Plan provides an avenue for certain accommodations or adjustments to be made to ensure that the student with IBD receives the same quality of education as other students. The goal is to remove any barriers to education so that the diagnosed child has equal access to learning and equal educational opportunities. Typically, a 504 Plan is created by the conjoined efforts of the parents/guardians, the student, and the school. It is important to note that this law is a federal law, which means that it applies to public schools. This law may also apply to some private/other schools but only if the school in question receives federal funding. In short, any school that is receiving any amount of federal funding is legally required to provide the necessary accommodations for a student with a documented disability.

What Types of Accommodations can my Child Receive?

The types of accommodations that your child receives will largely be dependent on how your child's diagnosis manifests. Plans can be adjusted to accommodate your child's needs. That being said, here are some accommodations that students with IBD may be able to have:

Unlimited access to the bathroom

Predetermined visual cue to inform the teacher they are leaving for the bathroom. This could be a hand signal, a laminated bathroom or nurse pass the student can leave on the desk, etc.

A permanent bathroom pass

Access to a nurse or staff bathroom

Ability to carry or use cellphone

Unlimited access to fluids/water to stay hydrated

Unlimited access to snacks

An individual healthcare plan developed with the school nurse

Access to study guides or handwritten notes when child is absent from class

Preferential seating (i.e. close to the door for ease in going to the bathroom)

Tutoring services

Quality versus quantity preference. For example, rather than having to practice fifty of the same type of problem, your child shows their ability to master this specific type of problem by completing three to five problems correctly. If they demonstrate competence, they can be excused from the rest.

Testing at preferred times during the day

Access to the school nurse, guidance counselor, school psychologist, etc.

Possible accommodations to PE/gym class

Options to make up missed assignments or class time due to medical appointments/unplanned absences

Extra time to finish tests

Separate testing room

Ability to keep a set of textbooks at home

Shorter school days

Transportation accommodations

Ability to have full participation in after school extracurricular activities, even on days the student may be absent

Extra set of clothes at the nurses station

Special accommodations for field trips and field trip planning

Please note that not every child with IBD will need every single one of these accommodations. Every IBD diagnosis is different, and every diagnosed child's needs are unique. Accommodations listed in the 504 Plan are selected based upon several conversations that include the child, the parents/guardian, and the school. Additionally, the above list of accommodations are merely suggestions, and the list is not exhaustive by any means. It may be beneficial to seek the advice of your child's GI specialist or healthcare team when discussing possible accommodations for a 504 Plan as well. They might have some insight on potential accommodations for your child and their unique medical situation.

How do I Start the Process of Establishing a 504 Plan for my Child?

There are several interventions that you can implement in order to initiate the process of establishing a 504 Plan for your child. Here are some suggestions:

Contact your child's doctor to obtain a letter or report documenting your child's diagnosis.

Contact your child's school. In order to start the process of creating a 504 Plan, initially you may need to schedule a meeting with a guidance counselor, school administrator, and/or an appointed staff member for these types of services.

Discuss your intention to create a 504 Plan with your child's teachers. Be clear about your child's health needs. Clear and effective communication between all parties involved in your child's care and education (teachers, school nurse, guidance counselors, administrators, parents/guardians) is vital to creating a successful 504 Plan.

Other Considerations When Creating a 504 Plan

When initiating the process of obtaining a 504 Plan for your child, there are several things that you should keep in mind.

Please note that as part of the process for creating a 504 Plan, your child's school must complete an evaluation of your child. This may include reviewing grades, attendance records, teacher's reports, health records, etc. The documentation from your child's doctor will be a piece of the evaluation process.

Each school is required to have a 504 Coordinator. The 504 Coordinator ensures that the school district is in compliance with section 504 of the Rehabilitation Act of 1973. This is the individual you would approach if you did not agree with the school district's evaluation decision or approved accommodations for your child.

A 504 Plan is strongly suggested for all children with IBD, even if the child is currently in remission. IBD can be unpredictable at times. If your child has an unexpected flare during the school year, having a plan in place to accommodate your child's needs can help alleviate some stress for both you and your child. Make sure your child's school and teachers are aware of the unpredictability of the disease.

In your child's 504 Plan, it is strongly encouraged to include a section/plan for how their education will proceed if the child needs to unexpectedly stay out of school for an extended period of time. As previously mentioned, IBD can be unpredictable. Talk with your child's school about the possibility of an in-home tutor or the ability to leave a copy of the textbooks your child is using at home. Make sure these details are documented in the child's 504 Plan.

Remember that a 504 Plan is different from an IEP. An Individualized Educational Plan, or IEP, is created for the child with an intellectual or leaning disability that requires special services. An IEP is more thorough and involved than a 504 Plan is and is possible through the Individuals with Disabilities Education Act (IDEA).

Unlike an IEP, a 504 Plan is not legally required to be reviewed and updated each year. However, it is strongly suggested that the 504 Plan for a child with IBD is reviewed and updated by the 504 Team (parents, guidance counselor, administrator, 504 Coordinator, etc.) annually, as your child's needs may change year to year.

It is suggested to start the process of creating or updating a 504 Plan as early as possible, even as early as the end of the school year. That way the plan is set into place well before the start of the next school year, and your child will be able to receive accommodations right from the first day of school.

Don't assume that your child's teachers know all of your child's approved accommodations. As mentioned previously, communication is key to a successful 504 Plan, and ultimately, your child's comfort.

Special Circumstances

If your child is learning remotely, you may be able to have certain accommodations, such as:

Student having permission to turn off camera if they feel unwell

Being able to leave or log off to use the bathroom without fear of reprimand

Being able to use a private chart to alert the teacher of need to use the bathroom

Ability to have access to notes or recorded lectures if student missed part or all of a class

Please note that 504 accommodations do not automatically apply to standardized college testing, such as the SATs and ACTs. If your child will be taking any standardized college testing during the upcoming school year, reach out to your child's school. They should be able to walk you and your child through the process of applying for accommodations for these types of tests. This should be done well in advance to ensure that accommodations will be approved well before your child's scheduled testing time.

Many parents want to know if their child's 504 Plan will follow them to college. If your child will be attending a public university or government-funded institution, you can have assurance that your child will be able to have accommodations. Section 504 of the Rehabilitation Act of 1973 also applies to higher education, with the same caveat that the school must be federally funded in some capacity. However, your child is an adult now. He or she will be responsible for going to their college's disability office themselves to discuss their diagnosis and set up appropriate accommodations. Depending on the college, your child may be able to receive accommodations, such as such as priority enrollment to classes (selecting classes ahead of peers), note-taking assistance, extended time for test taking, ability to take tests in a separate room, adjusted deadlines/attendance requirements, housing and/or dining accommodations, and more. Your child may benefit from bringing a copy of the current 504 Plan to their meeting with the disability office. For more information about navigating college with IBD, feel free to check out the blog post on this topic! It will be linked at the bottom of this page.

Talking With Your Child About Their 504 Plan

Creating a 504 Plan and making sure your child is accommodated for in an educational setting can be stressful. Please do not forget that your child is a huge part of the process. After all, the phone calls you will need to make and meetings that you will need to attend are ultimately for their benefit. Do not be afraid to involve your child in the process! One day they will need to be able to advocate for themselves, and you want to be able to teach them the skillset they need to be the best advocate they can be. In order to involve your child in the process, you will need to do so in an age-appropriate manner. You know your child best and will be able to discern the level of involvement that your child will be comfortable with. Ask your child what types of accommodations they would like to receive. Ask your child if certain interventions would be helpful to their learning and comfort. Ask your child how they feel about certain accommodations and let them know that it is okay to be open and honest with you. Your child may have fears related to “being different” or “standing out.” Let your child know that these are normal feelings and help your child to work through those feelings in a healthy, constructive manner. Seek outside help from a professional if you feel it is necessary. Make sure you review the plan with your child before you sign it to ensure they are aware of what accommodations are available to them. Involve your child and take into account their feelings in every step of the process!

I hope the information on this page was useful to you as you navigate your child's IBD journey in relation to their formal education. If you would like more help or have any questions, you can feel free to reach out to me using my email address linked below. Please know that there are options for support available as well. Being a parent of a child with IBD can be challenging. Understand that a having a 504 Plan in place for your child does not mean you are seeking special privileges for your child. Instead, you are seeking to provide your child with the same quality of education as other children. IBD Connect offers a virtual caregiver support group that meets one time monthly. There are several families who attend that have 504 Plans implemented for their child. We also have an in-person family support group, a virtual family support group, and a virtual young adult support group as available options for support. If you would like more information about these groups, click the link at the bottom of this page. As always, I would like to remind everyone not to use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child's individual treatment plan, please seek out the professional medical advice of your child's doctor. Stay strong IBD Warrior parents!

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