When my son, Aaron was 11 and needed help in school to deal with his migraines and Crohn’s Disease, I didn’t know what a 504 plan was. Aaron attended two different schools during the first two years of his diagnosis. In both schools, the guidance counselors were not sure whether or how 504 plans were used to help students with chronic illnesses. We were given a lot of misinformation, and little help for our son. I researched 504 plans, and spoke with other parents, a social worker, and a lawyer—all who had experience with the rights of students with chronic illnesses. We got a 504 plan in place for Aaron, which has helped him a great deal in school. I hope this guide helps other parents and students, so they do not have to dig as much for answers.
Please share your stories, advice, and ideas! Does your child (or do you) have a 504 plan? Did the plan help? Have you had any problems getting accommodations in school? Have any advice or stories you’d like to share? — Rachel
504 Plans for Students with Chronic Illnesses: A Guide for Parents and Students
What is a 504 Plan?
A 504 plan is used in schools to help students with chronic illnesses and other disabilities. Each plan outlines accommodations that are custom-made to fit the needs of an individual student. 504 plans are formal and binding plans created under Section 504 of the Rehabilitation Act of 1973.
A 504 plan can be requested by parents, students, or school administrators and is used at the pre-school through college levels. Accommodations can include things like: helping students get class notes and materials when they are absent; allowing students to take breaks to deal with their medical needs; providing a peanut-free environment due to severe allergies; allowing a diabetic student to eat snacks during class; and allowing students with digestive disorders to use a bathroom without restrictions.
There are differences in the types of accommodations provided at the elementary and secondary school level compared with the college level. Accommodations are generally more generous in pre-school through secondary school and more limited at the college level.
Who Can Have a 504 Plan in School?
504 plans are for “qualified” students in pre-school through college. In order to qualify for a 504 plan, a student must have “a physical or mental impairment that substantially limits one or more major life activities (Federal Dept. of Education, Office of Civil Rights-OCR).”
“Major life activities” include, but are not limited to: “functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions (OCR).” By definition, most chronic illnesses effect a major life activity in some way, so, students with diseases like diabetes, Inflammatory Bowel Disease (Crohn’s Disease and Ulcerative Colitis), asthma, and migraines could qualify, for example.
Having a diagnosis of a disease does not automatically qualify a student to have a 504 plan; “the illness must cause a substantial limitation on the student’s ability to learn or another major life activity (OCR).” And yet, the definition of a “substantial limitation” in Section 504 is quite broad. The laws allow for students to qualify for 504 plans EVEN WHEN:
- Their illnesses are in remission;
- Their illnesses are episodic in nature, such as epilepsy or migraines;
- Their symptoms are mitigated by treatments; and
- They are doing well academically.
Students with chronic illnesses may not always need to rely on their accommodations, but with a 504 plan in place, there is no need to scramble when a student is not doing well.
Would a student with a chronic illness ever not qualify for a 504 plan? Yes. If a student has an illness that has only a minor impact on his life, even during episodes or flare-ups, then he probably doesn’t need a 504 plan, and may not qualify for one. However, students may still want to let teachers know about their medical conditions and have an informal plan to deal with times when they need a little help or understanding.
Public, Private, and Religious Schools
Only students attending grade schools and universities that receive federal funding—however small the amount—are entitled to 504 plans. This includes all public schools and the majority of private schools since most do get some federal funding.
Secular private schools that do not receive federal funding are still regulated under the American’s with Disabilities Act (ADA). The ADA requires the same accommodations as Section 504, so students would see little difference between plans created in private and public schools.
Religious schools are not governed by either the ADA or Section 504, unless they receive some federal funding for their programs—and many do. In the case a school does not receive any federal funding, it is up to the religious institution to implement its own anti-discrimination policies. Religious schools can decide whether or not to admit students with disabilities and they can charge extra tuition for these students. Those religious schools that accept students with disabilities set their own policies on accommodations.
The issue of which, if any, anti-discrimination laws apply to religious schools has become murky in states that provide publicly funded school vouchers. In 2011, The Americans Civil Liberties Union (ACLU) filed a complaint against the Wisconsin school voucher program with the Department of Justice arguing that religious schools accepting school vouchers should have to accommodate not be able can deny admissions and accommodations to students with disabilities.
Students in Elementary and Secondary Schools
Many students with chronic illnesses find it helps to have a formal plan in place with their schools, so they can take care of their health needs and keep up with work when they are not well. Our federal laws have required elementary and secondary schools to meet a very high standard in the way they accommodate for students with disabilities—particularly those between ages 5 through 21 (who have not graduated from high school). For this age group, schools are obligated to identify which students have qualifying disabilities and are mandated to create plans and accommodations to meet their students’ needs “as adequately as the needs of students without disabilities are met (OCR) .”
IEP or 504 Plan?
There are two different plans available to students with disabilities in primary and secondary schools. In addition to 504 Plans there is the Individual Education Plan (IEP) which is part of the Individuals with Disabilities Act (IDEA). Students would have only one of these plans. IEP’s are limited to students who need special education services to help with cognitive, learning, or physical disabilities. Section 504 plans include students with a wider range of disabilities that do not require special education services.
IEP’s are limited to students ages 3-21, through secondary school (colleges do not have IEP’s) with one of 13 types of disabilities including:
Autism, deaf-blindness, deafness, developmental delay, emotional disturbance, hearing, impairment, intellectual disability, multiple disabilities, orthopedic impairment, other health impairment, specific learning disability, speech or language impairment, traumatic brain injury, visual impairment, including blindness.
504 plans include more disabilities, including chronic illnesses
504 plans are generally better suited for students with chronic illnesses as many illnesses do not affect students’ cognitive or learning abilities. However, students with chronic diseases who also require special education services would use an IEP rather than a 504 plan. In such cases, the IEP would include both accommodations related to the student’s chronic illness, and special education needs.
For more information on IEP’s and how to request one, see the guide to IEP’s on the National Dissemination Center for Children with Disabilities’ website.
Steps to Getting a 504 Plan in Elementary and Secondary Schools
The process involved in getting a 504 plan varies slightly in different school districts. This is because Section 504 left it up to states and local school districts to develop their own procedures for implementing the federal law. Some school districts have added deadlines for when decisions have to be made on 504 plans, and how often 504 plans must be re-evaluated after they have been approved. Each school district will have its own 504 plan request forms and may vary in its evaluation process. You can get your local regulations from your school, or on the school district’s website.
These are the general steps that should be common to every school district:
1. Contact the guidance counselor, principal, or the school office and let them know that you would like to request a 504 plan. Don’t wait for the school to notice that your child needs help—doing so could delay getting a plan in place.
2. The school will give you a “504 Request Form” with sections for a parent/guardian and the child’s doctor to fill out. It often asks for a description of the illness, how the illness impacts the student in school, and the types of accommodations the student needs in school. Give the completed form back to the guidance counselor or other school administrator in charge of 504 plans.
3. The school will form a “Section 504 team” to determine whether the student qualifies for a 504 plan. If the student qualifies, the team will develop a plan with accommodations. A “504 plan coordinator”—often a guidance counselor or advisor–will be assigned to oversee the implementation of the plan. A copy of the plan will be given to teachers and other school staff who will be involved in its implementation. 504 plans are considered legal documents, and must be followed by the school.
In New York City Public Schools, A 504 team consists of:
- at least 2 people, other than parents/guardians, such as a teacher, guidance counselor, principal, or school nurse:
- at least one person who is familiar with the student’s illness;
- at least one person who can evaluate whether the student qualifies for a 504 plan;
- at least one person who is familiar with the services available to help the student.
- Parents/guardians have the right to be part of the 504 team and attend meetings, but the school can meet and make decisions without parents, if the parents do not wish to attend or do not show up to the meetings. But the school is required to notify the parents about meetings twice before meeting without them.
- Students can participate in the 504 team meetings.
- Parents can invite other people familiar with the student’s illness.
- Team members can participate in person or over the phone.
- Parents can invite a lawyer or parent advocate to attend 504 team meetings.
Note: 504 teams in other school districts may vary somewhat in their members.
504 Accommodations for Elementary and Secondary Schools
A 504 plan can be simple, having only one or two accommodations, or it can be more involved if necessary. These are some examples of accommodations students can request at the grade school level. This is by no means an inclusive list, and each student will need different accommodations based on their individual circumstances.
- After frequent or prolonged absences due to illness, teachers will meet with the student to prioritize missed school work and to review missed lessons.
- The school will arrange for tutoring for the student as needed due to illness and absences.
- The student has permission to eat snacks in class.
- Unlimited use of a bathroom without having to ask permission and without needing to be joined by a classmate.
- Stop-the-clock testing” – if a student does not feel well during an exam and cannot continue, the teacher marks the stop time, and the student is allowed to finish the test at a later without penalty.
- Extra time to hand in assignments as needed due to illness.
- No foods containing [FOOD ALLERGY] should be eaten in the classroom by classmates or school staff.
- Student is allowed to carry medications and take them independently without delay.
- Teachers will provide all class materials to the student when he misses school due to illness.
- Teachers are encouraged to share class information, materials, lecture notes, and assignments electronically–using resources such as teleconferencing software, tape recorders, Googledocs, Edline, or similar programs.
- Student is allowed to go to the nurse to test blood glucose levels before lunch and anytime the student is not feeling well and low blood sugar is suspected.
- Student is allowed to carry a phone that is turned off and is out of sight in school. This is necessary in case the student has an emergency going to and from school.
- Student is allowed to use a staff bathroom (useful for children with digestive diseases who are uncomfortable sharing the bathroom with other students, or when the staff bathroom is closer than a student bathroom).
- The student is allowed to visit the nurse and take medication without delay regardless of the activity taking place in the classroom.
- Classmates of a student with severe food allergies will be instructed to wash their hands after eating.
- Student is allowed to move her seat away from other students who are sick with infectious illness (like flus, colds, stomach viruses) due to suppressed immune system.
- Student is allowed to self-monitor energy and pain levels and opt-out of physical activities if necessary.
- For schools willing to experiment with something new: Use the Vgo robot to allow student to participate virtually in school.
Appeal Process for Elementary and Secondary Schools
What can you do if the Section 504 team denies your child a 504 plan, or if you are unsatisfied at any point on how the 504 process is going? There are ways to appeal 504 plan decisions, and get outside reviews:
- Start by discussing the problem with the school: Before starting a formal appeal process, it may be worth having a discussion with the guidance counselor or the principal, and seeing if you can resolve problem. Sometimes, problems arise because principals and guidance counselors are themselves confused about who qualifies for a 504 plan or the types of accommodations allowed. Try bringing in a copy of the 504 regulations for your school district–each school district varies slightly in its procedures. Copies of the local 504 regulations are provided by schools, on state or school district websites, or by advocacy groups working within your state. The U.S. Department of Education Office of Civil Rights<span;”> posts the official Section 504 language on their website. If you are st ill unable to get a resolution after speaking with the school, then it may be time to start an appeal beyond your school.
- Appeal to the School District: If your school says a student does not qualify for a 504 plan; there are disagreements about accommodations; or the school is delaying the creation of a plan; you can request a review from the office (or person) at the school district level in charge of the 504 process. School districts vary in how responsive they are to parents’ complaints. For instance, <a;” href=”http://www.advocatesforchildren.org/”>Advocates for Children in New York City, tells parents that appealing to the district health liaison is not always affective, and advises parents hoping for a faster resolution to skip this step and move directly to a Due Process Hearing.
- Request a Section 504 Due Process Hearing: Families are entitled to an impartial hearing under federal law. The hearing is a formal process in which evidence is presented and an impartial hearing officer makes a decision. Students and their families are allowed to bring an advocate or a lawyer to the hearing, and can question the school’s witnesses.
- File a Complaint in Federal District Court: If there are still disputes after an impartial hearing, either the family or the school can appeal directly to the federal district court. It is recommended that families consult a lawyer at this point. Here, evidence is presented by both sides and a federal judge decides the case. It is also possible for parents to seek compensation for damages on the basis that a school acted “intentionally or with deliberate indifference” in violating Section 504 laws (Mark H. v. Hamamoto).
- File a Complaint with the U.S. Department of Education Office of Civil Rights (OCR): OCR oversees compliance with Section 504 in schools. You can fill out a complaint form with OCR any time, even if you are in the middle of a hearing or during a court action, and OCR will investigate it.
- For Private Schools Regulated by ADA (and not Section 504): If you attend a secular private school that does not have 504 plans, the school still needs to provide accommodations to students with chronic illnesses and disabilities under the ADA. It is best to discuss issues with the school first, but if they cannot be resolved, you can file a complaint with the U.S. Department of Justice or you can take the complaint to federal court.
- For Religious Schools not covered by either ADA or Section 504 It is my understanding that in religious schools not receiving any federal funding, students with disabilities are not protected under federal or state anti-discrimination laws. Separation of church and state rules do not allow the government or courts to intervene on issues of discrimination in religious institutions. Religious schools can decide not to admit students with disabilities to their schools, or they can charge higher fees to these students. It is up to the religious institution to voluntarily provide accommodations to its students with disabilities. Grievances concerning treatment of students with chronic illnesses would be handled within the religious institution.
- Contact a Lawyer or Parent Advocate at any Time: If you run into any difficulties at any point and feel that you need professional advice, you can consult a lawyer or parent advocate. Some charge fees, but a few provide free services. Here are links to organizations that can connect you with lawyers and advocates specializing in helping students with disabilities, including chronic illnesses:
Advocacy for Patients with Chronic Illnesses: A nonprofit that provides free legal services nationwide on issues related to chronic illnesses.
Universities and Colleges
Universities and colleges also provide accommodations for students with qualifying disabilities. But there are differences in the way things are handled at the post-secondary level. Here’s what you need to know:
- At the college level, it is up to the student to decide whether to disclose that he or she has a chronic illness. However, in order to receive accommodations, students need to contact the Office of Disabilities—or department with a similar name—and let them know about their illnesses and the accommodations they need. This is different than in the elementary and secondary school level, where schools are responsible for identifying which students require plans and accommodations, and are mandated to meet those needs.
- Students will need to have forms filled out by their doctors providing evidence of their illnesses, and proving that their illness qualifies them for accommodations. These forms are provided by the school.
- The accommodations offered at the post-secondary school level are more limited than in grade schools. Primary and secondary schools are responsible for providing students under the age of 18 with a “free and appropriate education (FAPE).” Under FAPE schools must modify their policies and requirements to fit the needs of students with disabilities. Colleges are not held to the same standard–they are not required to modify their policies or academic requirements. While post-secondary schools cannot discriminate against students based solely on disability, they are allowed to deny admission to students who do not meet their academic standards. Once admitted, students are expected to complete the work and exams associated with their classes. However, students with disabilities are not left completely on their own—colleges are required to provide accommodations that help them meet the academic requirements. See College-Level Accommodations for some examples.
- Students over the age of 18 are adults, and have the right to privacy independent of their parents. As such, their parents are not allowed access to their health or academic records and are not allowed to make decisions for their children. If students want their parents to participate and have access to their records, they can sign a waiver under the Family Education Rights and Privacy Act (FERPA). Students can rescind the waiver at any time. Colleges often encourage their students to take charge of their health and academic needs, as a step toward becoming independent adults. However, students may still want a waiver in place in case of an emergency.
- When a student requests accommodations, only the disability coordinator needs to know about his/her medical conditions. School staff and professors are given a list of accommodations they must follow that does not include the student’s diagnosis. It is up to the student to decide how much more information, if any, to disclose.
- Universities vary in how well they accommodate their students with chronic illnesses and other disabilities. Some schools are more sensitive to the needs of their students and have systems already in place that can make things easier. Students may want to consider how well a university provides for its students with disabilities when deciding where to attend school. (campus explorer). Look at college websites and brochures for their policies and programs. You can also call the school’s Disabilities Office for information before you apply.
- Students at the college level are often expected to be proactive in requesting and implementing their accommodations. For example, if a student would like a class recorded, he might be expected to buy the recorder and ask classmates or the professor to record the class.
- There are no I.E.P’s at the college and university levels. Universities and Colleges are still required to offer 504 plans (if receiving federal funding), or plans consistent with the ADA.
504 Accommodations at the College Level
The accommodations at colleges and universities are more limited than those provided in secondary schools. They focus on helping students with 504 plans meet the requirements of their chosen programs, and providing accommodations related to a student’s medical needs.
Here are some examples of accommodations relevant to students with chronic illnesses at the college level:
- Extra time to take exams.
- Stop-the-clock testing. If the student is not feeling well, they will be able to finish the test at a later time.
- Reduced course-load, and allowing extra time to complete a degree program.
- Extra time to hand in assignments due to illness.
- Ability to tape record classes.
- Ability to leave and rejoin class to take care of medical needs, including use of bathrooms.
- Ability to carry and take medications.
- Students are allowed to take college admissions exams with accommodations (SAT, ACT, LSAT, etc.). Students would contact the administrator of the test, and the test location, in advance to ask for accommodations.
- Colleges and Universities DO NOT have to provide accommodations that:
- Create an undue financial or administrative burden on the school;
- Fundamentally alter the school’s academic program; or
- Request personal care–like help with bathing or eating (Disability Rights California).
Appeal Process at the College and University Level
If your school refuses to give you the accommodations you need or if you believe the school has discriminated against you on the basis of your illness, you can appeal the decision or file a grievance. Here’s how:
- Start by discussing the problem with the Office of Disabilities: Sometimes, issues can be resolved without having to file a formal grievance. Visit the Disabilities Office and try to work out a solution together. If you cannot solve the problem with the school, it may be time to file a formal grievance with your college.
- File an internal grievance/appeal with your college: Each school will have its own process for filing appeals related to 504 plans and complaints of discrimination. Information on where to file a complaint will likely be listed on the college’s website or in catalogues and brochures. The college will review the 504 plan decisions and investigate accusations of discrimination.
- File a complaint in Federal Court: If you are still not able to resolve the dispute, you can file a lawsuit in Federal Court.
- File a Complaint with the U.S. Department of Education Office of Civil Rights (OCR): OCR oversees compliance with Section 504. You can fill out a complaint form with OCR, and the agency will investigate the complaint. You can file a complaint with OCR at any time, even if you are in the middle of a hearing or during a court action.
- Contact a lawyer or parent advocate at any time: If you run into any difficulties at any point and feel that you need professional advice, you can consult a lawyer or parent advocate. Some charge fees, but a few offer free services. Here are links to some organizations that can connect you with lawyers and advocates specializing in helping students with disabilities, including chronic illnesses:
Advocacy for Patients with Chronic Illnesses: A nonprofit that provides free legal services on issues related to chronic illnesses.
Wrightslaw: A law firm specializing in special education rights. They have an extensive list of lawyers and parent advocates on their website.
LINKS to College information:
Making the Laws Work Better
Section 504 of the Rehabilitation Act and the Americans with Disabilities Act have been crucial in countering discrimination against students with chronic illnesses, and in creating support systems in schools that help students meet their educational goals, despite their serious health conditions.
Yet, students still run into problems in their schools despite the protections these laws offer. Some of these problems seem to stem from a misunderstanding about the nature of chronic illnesses and insufficient knowledge of how Section 504 and the ADA apply to people who have chronic illnesses.
Students with chronic illnesses and their families also face an information gap. They do not always know that they can ask for help in their schools and are not always aware that there are laws protecting students with chronic illnesses from discrimination in schools.
The laws could be so much more effective if schools and students understood them better. The obvious solution is to provide everyone involved with more information. Here’s what we need to advocate for:
- Better training for school administrators and teachers about chronic illnesses; their students’ rights under the ADA and Section 504; and ways to accommodate their students with health conditions.
- More information for students with chronic illnesses and their families about their rights and the accommodations they can get at schools. This information can come in the form of brochures and workshops provided in doctor’s offices and in schools. Separate workshops and information should be offered to college students who need to understand how accommodations and procedures change once they get to the college level.