It Takes a Village: The 504 Plan
Maureen M. Kelly, RN, MS, CPNP
Department of Pediatrics, Division of Gastroenterology
School of Nursing
UNC-Chapel Hill, Chapel Hill, NC
December 14, 2013
Objectives
• Define 504 plan and differentiate from IEP
• Discuss how to get the 504 process started
• Identify the kind of accommodations needed for
students with IBD
• Discuss pertinent resources for school
accommodations
I have no disclosures to report
IBD from the Child’s Perspective
• “Young people with Crohn’s disease or
ulcerative colitis say their single most difficult
problem in school is their need to use the
toilet frequently and without warning due to
sudden attacks of diarrhea”
Crohn’s Disease & Ulcerative Colitis: A guide for teachers and other school personnel, CCFA
Case Study
• 14 year old female freshman in HS with ulcerative
colitis having several bloody diarrhea stools daily
• Had 504 plan in middle school with no problems
• Mother tried to get plan renewed summer prior to
high school, but guidance counselor didn’t sign off
• She needed to use bathroom during class. When
she came back to class after 10 minutes, the teacher
said, “What could you have possibly been doing in
the bathroom for 10 minutes?
Background
• In 1973, Congress passed the Rehabilitation Act
that prohibits discrimination based on disability
• Any organization or agency (including public
schools) receiving federal funds must comply;
schools are required to provide reasonable
accommodations for children with disabilities
• To be qualified under Section 504, the student
must be between 3 - 22 years of age, and must
have a disability
Difference Between IEP and 504 Plan?
• IEP: Plan or program to ensure child who has
disability identified under law and attending
elementary or secondary educational institution
receives specialized instruction and related
services
• 504 Plan: Plan to ensure child who has disability
identified under the law attending elementary or
secondary educational institution receives
accommodations that will ensure their academic
success and access to the learning environment.
No specialized instruction needed
When to Initiate a 504
• When child likely to miss out on his/her
education because of IBD
• End of 8th grade if not before due to limited
bathroom breaks, frequent standardized
testing in high school
• If extended time needed on standardized
tests, may be given with a letter from the
school. Less likely if no accommodations
during high school
How to Start the Process?
• Exact rules vary by school district
• Teachers or parents may make a referral
• Parents should start with “My child has a
medical condition that is affecting their
ability to get an education. I would like a
meeting to discuss setting up a 504 plan for
my child.”
• School is then required to set up an initial
meeting and assemble team to review
possible accommodations
Requesting a 504 Plan
• Make the request in writing
• Include supporting medical documentation
• All parties should develop a workable plan
Help the School Help the Student…
Initial Diagnosis Contact
List:
• School nurse
• Guidance counselor
• School social worker
• Teachers
• Administrators
Student File Letter
• Definition of IBD
• Associated symptoms
• Cyclical nature
• Home tutoring option
• Gym considerations
SAMPLE
School Address
To Whom It May Concern:
NAME is a patient currently under my care. Due to (her/his) illness (he/she) is a candidate for
school accommodations under section 504 of the Rehabilitation Act. She/he is substantially
impaired in the major life activities of digestion, disposal of bodily waste, and eating.
This student has a form of Inflammatory Bowel Disease (“IBD”) called (Crohn’s Disease/
ulcerative colitis). IBD is a chronic disease affecting the gastrointestinal system or GI tract.
Ulcerative colitis affects the colon; Crohn’s Disease can affect any part of the digestive track,
from the mouth to the anus.
The most common symptoms are diarrhea, abdominal and rectal pain and cramping, nausea,
vomiting, fatigue, and arthritis-like joint pain. Although its cause is unknown, IBD involves the
immune system and causes inflammation and ulceration of the lining of the intestines. The
emotional and physical symptoms are interrelated in complex ways, and patients can
experience flare-ups during times of emotional tension and stress.
Students with active IBD will need to use the bathroom several times a day – sometimes as
many as 20 – often on a moment’s notice in order to avoid fecal incontinence. Incontinence still
may occur, and students who suffer this symptom will need to be able to clean themselves and
change clothes during the school day. IBD is a chronic illness that is cyclical; patients can face
associated gastrointestinal symptoms in a recurrent pattern, with periods of symptom
inactivity in between active flare-ups and complications. Symptoms may worsen in an
unpredictable manner and conversely, may go into remission for varying lengths of time.
Medications can help manage the discomfort and inflammation, but are not cures for IBD.
As a result this chronic condition, NAME requires accommodations which may include
unlimited bathroom access, excused absences, and other accommodations.
Please call my office at xxx-xxx-xxxx, if you have any questions or concerns.
Sincerely,
Name
Contact Information
4 Types of Accommodations
• Changes in testing
• Changes to environment
• Changes in context of teaching
• Changes in schedule
Sample 504 Plan Accommodations
• Cell phone use in emergency • Extra set of books
• Bathroom pass and/or
nurse’s office pass
• Increased time between
classes
• Revised seating chart
• Accommodations for fatigue
• Food/drink in class/selfmedication during school
• Excused absences for
treatments, appointments,
hospitalizations
• Stop-the-clock testing
• Rescheduling project/exam
deadlines
• Assistance with make up
work, tutoring
What About College?
• A student with a 504 plan can carry over special
accommodations to college
• Adjustments required to eliminate and/or
protect against discrimination. Adjustments
include extending length of time for completion
of degree requirements or adding time to exams
• May allow student extra time to complete exams,
allow for bathroom breaks, private dorm room or
private bathroom
Back to the Case Study…
• Mother emailed teacher with no response
• She then talked with principal
• Principal scheduled conference with guidance
counselors, teachers
• Never had another issue with bathroom break
• What were the gaps here? How could they
have been avoided?
Ways to Help Kids with IBD
• Encourage to keep up with schoolwork while
hospitalized as they are able
• May need home-bound instruction
• Help school personnel understand child’s needs
and be the child’s advocate
• Assist with 504 accommodations
• Understand the role physical and
emotional stress play in the illness
Take Home Messages
• Medications, missed school may affect learning
• Collaborative effort between medical personnel,
school services, parents and child
• Get the process in place ASAP
• Approach as opportunity to educate and partner
with the school
Support and Resources
Education
• National Dissemination Center for Children with
Disabilities: www.nichcy.org
• U.S. Department of Education: www.ed.gov
• Parent Advocacy Coalition for Educational Rights:
www.pacer.org
• Advocacy for Patients with Chronic Illness Inc. 504
Template for Students with IBD:
www.advocacyforpatients.org
Support and Resources cont.
• CCFA: ccfa.org
– Look under “search our resources” for:
o Taking IBD to School
o School accommodations letter
o Template Section 504 plan for children with IBD
o Crohn’s disease and ulcerative colitis: A guide for
teachers and other school personnel
o Doing our homework: A parent’s guide to
educational equity