Advocating for Your Medically Complex Child in School

This session from our 2024 conference will help parents of children with complex medical needs navigate the educational system.

Topics include the necessity of creating comprehensive IEPs and Individualized Health Plans (IHPs) with actionable emergency plans. Gain tips for managing frequent absences, using seizure action plans, and ensuring your child is included in mainstream classes and activities. The presentation emphasizes the importance of open communication, proper training for educators, building transition goals into the IEP for postsecondary planning, and planning for college life.

Understanding the steps in the IEP process is crucial. But knowing how to stand up for your child is just as important.

Here are some simple tips to help you become a strong advocate for your child:

Prepare: Gather all the information you need for meetings about your child's education. Request records and assessment reports ahead of time. Review progress reports, homework, and any notes about your child. If you use a goal-tracking spreadsheet, take a look at that too.

Learn: Educate yourself about your child's condition, how they learn, and what they need in school. Children with a history of epilepsy may have a serious impact on their academic abilities due to epilepsy itself, anti-seizure medications, or surgery. Understand how tests work and what the results mean. Knowing your child's strengths and challenges will help you set meaningful goals for them. Be clear about your child's rights in school and the different parts of their education plan, like their goals and services. Don't hesitate to ask the team to explain anything you don't understand.

Document: Keep thorough records of everything related to your child's education. Take notes during meetings or record conversations (if allowed in your state). After meetings, send a summary to the school highlighting what was decided. Keep copies of important papers either physically or digitally.

Seek Help: Sometimes, you may need experts to help you better understand your child's needs. They can also assist in communicating with the school. Bring a friend or family member with you for support if needed.

Build Relationships: Try to get along with the people at your child's school. It's easier to work together if you have a good relationship. Let them know you want to be involved in all decisions regarding your child's education.

Speak Up: Always write a letter expressing your concerns as a parent and provide it to the team before every IEP meeting. During the meeting, don't hesitate to ask questions and share what you believe is best for your child. If you feel the school isn't meeting your child's needs, be prepared to advocate for them. Remember, parents are equal participants in developing the IEP.

We are with you every step of the way!

You're not alone in this journey. There are plenty of resources available to support you.

The next few sections will help you with tools to better advocate for your child and navigate the IEP process.