ONCE UPON A GENE - EPISODE 144

Summer Surfing - Get On Top of the IEP Wave - Things You Can Do This Summer to Make Next Year Better with Gay Grossman

Gay Grossman is the co-founder of ADCY5.org and she's a mom to her 25 year old daughter Lilly who lives with a rare disease. She's been an advocate for everyone in the rare disease community for over 20 years. She shares her knowledge with us about IEP's and how to be the fiercest, most equipped advocates we can be.

EPISODE HIGHLIGHTS

What is the difference between 504 and IEP?

A 504 is the plan utilized to help kids that may need adaptations or accommodations in the classroom. An IEP is a federal document that has to be followed by school districts that provides individual support to a single child. An IEP is changed yearly and often to ensure a child has the accommodations needed to access their education. 

How can parents prepare for and restructure IEP meetings? 

Several people will be there and the first step is generally to go around the room reading reports about a child's diagnosis and challenges. Ahead of the meeting, request that all reports are provided a week before the meeting so you can create an agenda. Read the reports at home and create an agenda that begins with an overview of top needs and how to meet those needs. 

Who writes an IEP and what should parents know about it?

The IEP is written by the school. Take the IEP home, review it and ensure you understand it before you sign it. An IEP is a legal contract, so it's important to document, take good notes, communicate through email, and cover yourself. You can call an IEP meeting any time of year, but avoid the end of the school year to maximize time and attention. It's okay to hire an advocate or attorney or invite a friend to be in attendance at the meetings. 

What advice do you have for parents going into their first IEP?

If a goal doesn't seem measurable, it's not a goal you care about, or it's not a goal your child strives for, make a new goal. Focus on highlighting goals that are helpful so you can change goals that aren't helpful. Request a meeting with the school, visit the classroom to familiarize yourself, ensure the goals that you've prioritized are obtainable. 

LINKS & RESOURCES MENTIONED

Global Genes Patient Advocacy Summit

https://globalgenes.org/event/rare-patient-advocacy-summit/

Individuals with Disabilities Education Act (IDEA)

https://sites.ed.gov/idea/

ADCY5.org

https://www.adcy5.org/

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