This article explains what a 504 plan is, why it can matter even if you feel well right now, what accommodations teens with kidney conditions sometimes request, and how to start a conversation with your family, care team, and school. It provides background and vocabulary, not medical or legal advice. The supports that make sense depend on your health and are determined through your school’s process with input from you, your family, and relevant professionals.

What a 504 plan is

Schools commonly use a written 504 plan to record the aids, services, or adjustments a qualified student needs for equal access to education. The name comes from Section 504 of the Rehabilitation Act, a federal civil rights law.[1] The supports are individualized and may include changes to school routines, policies, or services.

The key word is access. Section 504 is meant to meet a student’s individual educational needs as adequately as the needs of students without disabilities are met.[1] Accommodations generally change how a student accesses school or demonstrates learning; they do not assume that the student cannot do the work.

The school develops the plan through an individualized process that usually includes the student’s parent or guardian and may include the student, especially as the student gets older. Ask your school or district who handles Section 504 requests; that person may be called a Section 504 coordinator.[2]

You may also have heard of an IEP, or Individualized Education Program. An IEP is created under the Individuals with Disabilities Education Act (IDEA) for students who are eligible for special education and related services. A student who does not qualify for special education under IDEA may still be eligible for aids, services, or accommodations under Section 504. If a student is eligible under IDEA, the IEP can include health-related supports and can also satisfy Section 504 requirements.[1]

Why this can matter even if you feel fine

Two features of ADPKD-related school needs make Section 504 worth knowing about, even for teens who rarely feel sick.

First, ADPKD-related needs can be episodic. You might feel completely well for months and then have a stretch of pain or several appointments and imaging visits. Under Section 504, an episodic condition may qualify if it would substantially limit a major life activity when active.[1] In plain terms, a condition that comes and goes can still count, judged by what a hard stretch is like rather than by a good day. A plan can be available when you need it without requiring you to use every accommodation every day.

Second, strong grades do not automatically rule you out. Eligibility depends on whether an impairment substantially limits a major life activity or major bodily function, not simply on whether grades have already fallen. Those phrases have set meanings: major life activity covers everyday things like concentrating or learning, and major bodily function covers things like how your bladder and kidneys work. Federal guidance specifically notes that a student may be eligible even when earning good grades.[2]

Imagine that the first months of school go smoothly. You feel well, keep up with your work, and do not think much about accommodations. Then several things happen at once. Your clinician has recommended increased fluid intake, so you need the restroom more often, sometimes during a quiz. Around the same time, you have flank pain and two nephrology appointments in two weeks. Suddenly you are explaining to several teachers why you are leaving class, stepping out during a test, and missing work in the middle of a hard week. A plan developed earlier could already address issues such as restroom access, missed work, and testing interruptions. The point is not to expect a bad stretch; it is to reduce avoidable stress if one occurs.

Because ADPKD is inherited, some teens know they have a family risk before they have a diagnosis or school-related needs. Family risk alone does not automatically establish Section 504 eligibility; the school makes an individualized decision based on the student’s own condition and needs.[1] If this describes you, accommodations may be something to revisit with your family and clinician if needs develop.

An international qualitative study of 33 adolescents with ADPKD found that pain, activity limitations, and effects at school were among the burdens participants reported; 6 participants (18%) said they had missed school because of ADPKD.[3] A separate single-center observational study of adolescents and young adults with chronic kidney disease found that participants without an IEP or 504 plan reported more emergency department visits, hospital admissions, and inpatient days in the prior year. That study found an association, not proof that a school plan caused better health outcomes.[4]

Accommodations teens with kidney conditions sometimes ask for

Think of the list below as examples to discuss, not a menu you are expected to choose from. Your family and care team can help identify health needs; the school’s 504 team determines eligibility and the final accommodations. Guidance for children with chronic kidney disease lists examples such as extra time between classes, extra time on tests, and unrestricted access to a bathroom and water.[5]

Examples that sometimes matter for teens with ADPKD include:

  • Water access. If your clinician has advised you to drink more fluids, permission to keep and use a water bottle in class may help.
  • Restroom access. Increased fluid intake can mean more restroom trips. A plan may allow restroom use when needed and, if available and agreed, access to a more private restroom such as one near the nurse’s office.[5,6]
  • Rest during pain episodes. Permission to visit the nurse or another agreed location and rest when flank or abdominal pain occurs.
  • Flexibility for fatigue. Short breaks, flexible timing, or another agreed adjustment on days when fatigue is significant.
  • Time for medical appointments. Excused absences for nephrology visits, blood pressure checks, imaging, illness, or hospitalization, with an agreed way to make up missed work.[5,6]
  • Blood pressure and medication needs. If you take medication or need health monitoring during the school day, such as blood-pressure checks, a plan can include an agreed procedure for doing so.[2]
  • PE and sports adjustments. Sports decisions should be individualized with your nephrologist.[5] A plan can record any agreed adjustments to physical education or school sports. (A separate PKD Bridge article addresses sports participation.)
  • Participation in school activities. Support for field trips, labs, clubs, performances, and other events may include planning for water, restroom access, medication, or a place to rest so that a harder day does not automatically mean sitting out.[7]
  • A discreet signal. A student and teacher may agree on a quiet signal for leaving class, so the student does not have to explain in front of classmates.[6]
  • Testing flexibility. If pain, restroom needs, an appointment, or an absence disrupts a school test, extra time, a paused timer, or rescheduling may be considered.[5,6]

You, your family, and your clinician can identify which health needs apply. The school’s 504 team determines eligibility and the accommodations included in the final plan, which can be reviewed when needs change.[1] Exhibit A is a preparation checklist you can complete with your family and clinician and bring to the school conversation.

People who may be able to help

You do not have to manage this process alone. The people below may have different roles depending on your school and situation:

  • Your parent or guardian. For most students under 18, a parent or guardian helps request an evaluation, provides consent for the initial evaluation, and participates in the school’s decision-making process.[1]
  • Your kidney doctor or care team. A clinician can explain your diagnosis, symptoms, and functional needs. Medical information may be considered, but a diagnosis alone does not decide Section 504 eligibility; the school must draw on information from multiple sources.[1]
  • The school nurse. The nurse may help connect medical needs with practical school-day supports and health procedures.
  • Your school counselor. A counselor may help you find the right school contact, understand the process, and think through what support would be useful.
  • The school’s Section 504 contact. Ask who handles Section 504 evaluations and plans at your school or district; titles and procedures vary.
  • A disability-services office. This matters later, in college, where students generally request academic adjustments through the college’s own process. (A separate PKD Bridge article addresses college planning.)

Coordinated support among schools, families, and health care professionals is recommended for students with chronic conditions.[7] In broader chronic-illness research, stronger school belonging has also been associated with better odds of on-time high school completion.[8]

How to start the conversation

School districts use different forms and procedures, so treat these as general steps rather than an exact script.

  1. Talk with your parent or guardian. Decide together whether requesting a Section 504 evaluation is worth exploring. For most minors, a parent or guardian will help start and participate in the process.
  2. Ask your care team whether medical information would help. A clinician letter can describe the diagnosis, symptoms, and functional needs, but the school team, not the clinician, makes the legal eligibility and accommodation decisions.[1]
  3. Contact the school. Many families make the request in writing to the counselor, principal, school nurse, or Section 504 contact so there is a clear record. Ask for the district’s evaluation process and forms.
  4. Participate in the evaluation and planning process. A group of people knowledgeable about the student, the evaluation information, and available supports reviews the information, determines eligibility, and identifies any needed services or accommodations.[1]
  5. Review the plan as needs change. Federal rules require periodic reevaluation and reevaluation before a significant change in placement.[1] District review schedules and paperwork vary.

Questions worth asking

For your clinician:

  • Given my ADPKD right now, are there school accommodations you would recommend?
  • Has my care team recommended increased fluid intake, and if so, what should the school know?
  • Are there activities, like certain sports, we should talk about?
  • Would a letter or other medical information be helpful for the school’s evaluation?

For your school:

  • Who coordinates 504 plans here, and how do we start?
  • How are my accommodations shared with my teachers, and how private is that?
  • What happens if my needs change during the year?
  • How and when is the plan reviewed?

When to bring in your care team

A 504 plan addresses access and support at school. It does not replace medical evaluation or treatment, so some questions belong with your clinician rather than the school:

  • Contact your care team about new, worsening, or unexplained symptoms rather than trying to manage them through a school plan.
  • Before making sports decisions, especially about contact or collision sports, discuss your individual situation with your nephrologist.
  • Questions about fluid intake, medication, or blood pressure monitoring are medical questions for your clinician.
  • If your health or school needs change during the year, tell your family and care team and ask the school whether the plan should be reviewed.

When you are unsure whether something needs medical attention or school support, start with a trusted adult or your clinician. They can help you decide the next step.

Things to think about before deciding

Privacy. Ask who will receive the plan, what information they need, and how your records will be handled. You should not have to explain your condition in front of classmates. Your preferences matter, although staff responsible for implementing accommodations may need relevant information.

Timing. You and your family can decide when to ask for an evaluation, but the school determines eligibility. Some students request support when a current need appears. Others may qualify because an episodic condition would be substantially limiting when active, even if they feel well on the day of the meeting.[1]

It can change. ADPKD-related needs may shift over time. A plan can be reviewed and updated, so it is reasonable to begin with the supports that are currently needed.

A note on college and standardized tests

A high school 504 plan does not automatically provide accommodations on College Board exams, such as the SAT or AP exams, or on the ACT; each testing organization has its own approval process.[9,10] Section 504 and the Americans with Disabilities Act still protect qualified students in college, but colleges use a different process. Students generally must identify themselves and request academic adjustments through the college’s disability-services office.[11]

What this can feel like

Asking for accommodations when you often feel well can be uncomfortable. Some teens worry that a plan will make them look different, that teachers will treat them as fragile, or that classmates will learn something private. Those reactions are understandable.

It may help to remember that a 504 plan is about access. Using agreed accommodations is a form of self-advocacy, not an admission that you cannot do the work. You can have a voice in how your needs are described and how support is delivered. Wanting privacy and wanting support can go together. If these feelings begin to weigh on you, talk with a trusted adult, school counselor, or mental health professional.

The bottom line

A 504 plan can help keep ADPKD from interfering with access to school on harder days. Feeling well today or earning strong grades does not automatically rule a student out. Eligibility depends on whether the condition substantially limits a major life activity or major bodily function, including when an episodic condition is active.[1,2]

This article provides educational information to help you begin a conversation. It is not medical advice, legal advice, school advocacy, counseling, or crisis support. Much of the legal and school-accommodation guidance applies to chronic health conditions generally rather than ADPKD specifically, so it should be used cautiously as a starting point. For individualized decisions, talk with your clinician, parent or guardian, and appropriate school personnel; for college, contact the institution’s disability-services office.

References

  1. U.S. Department of Education. Frequently Asked Questions: Section 504 Free Appropriate Public Education (FAPE). Available from: https://www.ed.gov/laws-and-policy/civil-rights-laws/disability-discrimination/frequently-asked-questions-section-504-free-appropriate-public-education-fape [accessed June 13, 2026]
  2. U.S. Department of Education, Office for Civil Rights. Parent and Educator Resource Guide to Section 504 in Public Elementary and Secondary Schools. 2016 Dec. Available from: https://www.ed.gov/media/document/parent-and-educator-resource-guide-section-504-public-elementary-and-secondary-schools-2016-21262.pdf [accessed June 13, 2026]
  3. Oberdhan D, Schaefer F, Cole JC, Palsgrove AC, Dandurand A, Guay-Woodford L. Polycystic Kidney Disease–Related Disease Burden in Adolescents With Autosomal Dominant Polycystic Kidney Disease: An International Qualitative Study. Kidney Medicine 2022 Mar;4(3):100415. doi: 10.1016/j.xkme.2022.100415
  4. Javalkar K, Fenton N, Cohen S, Ferris M. Socioecologic Factors as Predictors of Readiness for Self-Management and Transition, Medication Adherence, and Health Care Utilization Among Adolescents and Young Adults With Chronic Kidney Disease. Prev Chronic Dis 2014 July 10;11:140072. doi: 10.5888/pcd11.140072
  5. National Institute of Diabetes and Digestive and Kidney Diseases. Helping Your Child Adapt to Life with Chronic Kidney Disease. Available from: https://www.niddk.nih.gov/health-information/kidney-disease/children/helping-child-adapt-life-chronic-kidney-disease [accessed June 14, 2026]
  6. Crohn’s & Colitis Foundation. Template Section 504 Plan for Children with Inflammatory Bowel Disease. 2012. Available from: https://www.crohnscolitisfoundation.org/science-and-professionals/patient-resources/template-section-504-plan [accessed June 13, 2026]
  7. American Academy of Pediatrics. Consensus Statement on the Core Tenets of Chronic Condition Management in Schools. 2021 Aug. Available from: https://downloads.aap.org/AAP/PDF/Consensus%20Statement%20-%20Core%20Tenets%20of%20CCMS%20%202021-08%20.pdf [accessed June 14, 2026]
  8. Kirkpatrick KM. Adolescents With Chronic Medical Conditions and High School Completion: The Importance of Perceived School Belonging. Continuity in Education 2020 Apr 27;1(1):50–63. doi: 10.5334/cie.5
  9. College Board. If the student has an IEP or 504 plan in place, do they still need to submit a request for accommodation? Available from: https://accommodations.collegeboard.org/help-center/if-student-has-iep-or-504-plan-place-do-they-still-need-submit-request-accommodation [accessed July 14, 2026]
  10. ACT. Requesting Accommodations for the ACT Test. Available from: https://www.act.org/content/act/en/products-and-services/the-act/registration/accommodations.html [accessed July 14, 2026]
  11. U.S. Department of Education, Office for Civil Rights. Students with Disabilities Preparing for Postsecondary Education. 2011. Available from: https://www.ed.gov/higher-education/students-disabilities-preparing-postsecondary-education [accessed July 14, 2026]

Exhibit A

Download the article and worksheet (Word)

Sample Section 504 Plan for a Student with ADPKD

A customizable starting point, not a completed or official plan

This sample is Exhibit A to the PKD Bridge article “504 Plans and School Accommodations: How to Start the Conversation.” Read the article first for background on Section 504, possible accommodations, and the school process. This worksheet turns the article’s examples into a checklist you can use to prepare for a conversation with your school.

Please read first. This is an educational sample for a student with autosomal dominant polycystic kidney disease (ADPKD) and the student’s family. It is not a legal document, a completed 504 plan, or a substitute for the school district’s process and forms. It is not medical or legal advice. Complete medical details with the student’s clinician when appropriate. The school’s Section 504 team determines eligibility and final accommodations using its own evaluation process; a clinician does not make that legal decision. For questions about rights or a dispute with a school, contact the district’s Section 504 coordinator or a local education legal-aid or disability-rights organization.

How to use this: With your family, cross out anything that does not apply and add anything that does. Ask the clinician to help with medical details, then bring the worksheet to the school as a conversation starter. The district’s own forms and procedures control the final plan.

Student and plan information

Student name:

Date of birth: Grade: School year:

School:

Date plan drafted: Proposed review date:

Parent or guardian:

Phone and email:

504 plan coordinator or school contact:

Health care provider, if involved (nephrologist or pediatrician): Phone and email:

About the student’s condition

This student has autosomal dominant polycystic kidney disease (ADPKD), a chronic kidney condition. ADPKD can affect students differently, and school-related needs may change over time.

Description of how ADPKD currently affects this student at school, with medical details completed with the student’s clinician when appropriate:

Eligibility statement

Under Section 504, the school determines whether a physical or mental impairment substantially limits one or more major life activities or major bodily functions. Use this section to describe the activities or functions affected; complete legal eligibility with the school team and medical details with the clinician.[1]

  • Genitourinary (kidney and bladder) function, or another major bodily function affected by ADPKD:
  • Concentrating, thinking, learning, walking, or another major life activity:
  • Other:

Purpose of this plan

The goal of this plan is to support equal access to school, address the student’s individual ADPKD-related needs, and reduce avoidable disruption. The plan should be reviewed when those needs change.

Health needs at school

Check the health needs that apply and add specific details. Complete medical information with the student’s clinician when appropriate; the school team determines the accommodations.

  • Increased fluid intake, if advised by the student’s clinician. Detail:
  • Frequent restroom use related to fluid intake. Detail:
  • Flank or abdominal pain episodes. Typical signs, and what helps:
  • Fatigue or reduced stamina. Detail:
  • Blood pressure monitoring or high blood pressure. Detail:
  • Medication taken during the school day. Medication, timing, and where kept:
  • Medical appointments during school hours. Typical frequency:
  • Activity or sports considerations, per the student’s clinician. Detail:
  • Other health need:

Accommodations

Check the accommodations to discuss or request and fill in the details. Add or remove items so the worksheet fits this student. The school’s Section 504 team will determine the final accommodations through its evaluation and planning process.

  • Water bottle access. Permission to keep and drink from a water bottle in class when increased fluid intake has been recommended.
  • Restroom access. Permission to use the restroom when needed, with an agreed procedure that does not require repeated public explanation. If available, access to a more private restroom:
  • Preferential seating. A seat near the door, so leaving for the restroom is less disruptive:
  • Rest during pain episodes. Permission to visit the nurse or another agreed location and rest when pain occurs. Where the student goes and who is notified:
  • Fatigue support. Short breaks, flexible timing, or adjusted deadlines on days when fatigue is significant, while maintaining essential course requirements. Detail:
  • Medical absences and make-up work. Disability-related absences for appointments, illness, or hospitalization are handled under an agreed procedure, with a reasonable way and timeline to make up missed work and tests. Detail:
  • Medication and blood pressure support. An agreed procedure for medication or blood pressure monitoring during the school day, consistent with the health-needs section above. Detail:
  • PE and sports adjustments. Individualized adjustments to physical education or school sports, based on clinician recommendations and applicable school or athletic rules. Detail:
  • Paused-timer or stop-the-clock testing. For school quizzes or course exams, the timer pauses during an approved restroom or pain break and resumes when the student returns. External standardized tests require separate approval from the testing organization.[9,10] Detail:
  • Test and assignment rescheduling. If symptoms, an appointment, or hospitalization prevents a test or deadline, provide an agreed rescheduled date or extension without a disability-related academic penalty. Detail:
  • Coordinated test and project load. When feasible, coordinate major tests or projects to avoid an unreasonable same-day load during a period of significant symptoms or medical care. Detail:
  • Make-up or instructional support during an extended absence. Provide reasonable access to assignments, instructional materials, tutoring, or district home/hospital instruction if the student is separately eligible. Detail:
  • Field trips and activities. Plan for participation in field trips, labs, clubs, and events, including water, restroom, medication, rest, transportation, and emergency-contact needs as applicable. Detail:
  • Discreet signal. An agreed, private signal the student can use to leave class without having to explain in front of others. The signal:
  • Other accommodation:

Communication and privacy

Teachers and staff who need to know about this plan:

How the accommodations will be shared with them, and how the student’s privacy will be respected:

Who the student or family should contact with questions or concerns:

What happens if the student’s needs change during the year:

Review

Proposed review date: . The family may ask the school to review the plan when the student’s needs change. The school will conduct periodic reevaluation as required.[1]

Signatures

This document remains a family preparation worksheet. Only a plan completed through the district’s official Section 504 process is operative, and signature requirements vary. The lines below can record who participated in the conversation.

Student: Date:

Parent or guardian: Date:

504 plan coordinator: Date:

Other participant: Date:

A reminder as you finish. This worksheet is educational and is only a conversation starter. It is not medical advice, legal advice, a completed 504 plan, or a substitute for the school district’s process. Complete medical details with the clinician when appropriate. The school’s Section 504 team determines eligibility and final accommodations. For questions about rights or a dispute, contact the district’s Section 504 coordinator or a local education legal-aid or disability-rights organization.