A Review of IEPs and 504 Plans : Living with "Rare"

 Living with "Rare"

A blog devoted to navigating and analyzing life with 
Rare and Complex Disorders.



A Review of IEPs and 504 Plans

by RNE submissions on 07/03/17

by Joanna Mechlinski

While having to live with a rare disease is difficult at any age, there are special challenges when you’re a child. Most kids will moan about various aspects of school, but rarely is there any real question about their ability to get through them. Unfortunately, that's not always the case for children who are living with a rare disease, which may impact them physically and/or mentally.

Thankfully, there are IEPs and 504 plans to help students navigate the educational system as smoothly as possible.

An IEP – or Individualized Educational Plan – is a document developed for each public school child determined to have a disability. The IEP details the student’s individual learning style and how the student best demonstrates what has been learned. The overall goal is for the student to remain involved in regular academics and school activities as much as possible, with special assistance only provided when absolutely necessary. A team (which includes both school staff and parents) develops goals for the student, revisiting them annually to assess whether they need to be adjusted.

Some common accommodations can include extended time on tests and assignments, preferential seating in the classroom, adapted textbooks or materials, assistive technology (such as a voice-output for communication or a Braille reader), a one-on-one aide, specialized transportation or modified meals.

A 504 plan – or Section 504 of the Rehabilitation Act of 1973 -  is for students with physical or emotional disabilities which impact their ability to conduct major life tasks in areas such as vision, hearing or walking. Goals are not usually set.

Although both an IEP and 504 plan may seem similar at first glance, the latter protects many students that the former does not identify as having a disability, as its definition is broader. It also extends to life outside the school day, e.g. extracurricular activities.

Of course, resources may vary throughout the country. Each state has a Parent Training and Information Center which can help parents learn about specific services and policies in their area; the Center for Parent Information and Resources (CPIR) oversees them all. To find your state’s center, go to http://www.parentcenterhub.org/find-your-center/

Feeling confused and overwhelmed by all the jargon and details? You might want to check out the New England Genetics Collaborative (NEGC)'s Genetics Education Materials for School Success (GEMSS). The goal of this group of specialists is to promote awareness and education about genetic conditions. Their site includes a great breakdown comparison of IEPs and 504 plans, as well as individualized family service plans (IFSPs), which are used for children under age three., here:
https://www.gemssforschools.org/faq-instructions/ifsp-iep-504

Another wonderful resource for parents is Global Genes' “Advocating for Child with a Rare Disease at Their School” toolkit. This nonprofit patient advocacy organization produces a wide variety of resources detailing the many aspects of living with a rare disease, from childhood to adulthood. To get started, go here: https://globalgenes.org/toolkits/educationadvocacy/intro/

If you believe adaptations or modifications might help your child be more successful in school, please don't hesitate in speaking to school staff or your pediatrician! All of these professionals are on the same team – making sure your child makes the most of his or her school years.

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A lifelong Connecticut resident, Joanna Mechlinski is a former newspaper reporter who now works in education. She was diagnosed with lupus, fibromyalgia and polymyositis in her early twenties. In addition to helping spread rare and chronic illness awareness, Joanna is also passionate about animal advocacy, reading, writing, and road trips.

 Mary-Frances Garber is a licensed genetic counselor, providing supportive counseling for families in search of a diagnosis, a listening ear for those receiving a new diagnosis and decision-making counseling for individuals or couples facing choices regarding having another child . She also is available for bereavement counseling. Patients are seen in a private office setting in Needham, Massachusetts.
Listening, Reflecting, HealingSupportive Genetic Counseling 
Find more info here.
Meet our blog writers!
Jenna Anne
  I write to you as a wife and mother of 4 children. Three daughters and a medically complex son. I live in New England and have a love of fiber arts, music, and most importantly advocating for my children. My background is in Early Childhood Education and Music Education, I have no medical background aside from what I have had to learn on this medical journey. My writing is not statistic based, it’s not guidelines or resources but rather I bring a perspective from the human experience. Often in this world of medical complexity we focus specifically on the patient and the diagnosis and treatments, my writings offer the community a different perspective on how the day to day events are affected by medical interventions. The impact it has on siblings and family. The perseverance it takes to keep a wholesome family continuously adapting and thriving amidst all the challenges of medical complexity. My writings are often raw and unapologetic and speak to the human experience behind the policy, coding and diagnostics of modern medicine.  

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