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Starting the IEP process: a guide for CVI families

Learn about an IEP and how it relates to IDEA, and how to start the process for your child with CVI

What’s an IEP? What about IDEA? Or an IFSP or 504? Unless you’re a professional, these acronyms are probably pretty confusing. 

In this piece, we’re going to explain what an IEP (Individualized Education Program) does for kids with CVI and how it relates to the IDEA (Individuals With Disabilities Education Act). We’ll touch on IFSPs (Individual Family Service Plans), too (they’re for the littlest kids).

What’s an IEP, IFSP, and the IDEA?

An IEP is designed for kids with any kind of learning need, such as CVI, which both requires specialized instruction and restricts their access to a traditional curriculum. The goal is to help those kids learn to their potential. IEPs are designed to be completely tailored to your child (hence the “individualized” piece!). It’s a written legal contract that serves as a blueprint. It maps out your child’s specific learning supports and services. It covers kids from 3 until their 22nd birthday, and it’s free. Learn more about the IEP from the U.S. Department of Education.

An IFSP supports kids through their 3rd birthday. Think of an IEP as an education document, whereas an IFSP is broader: It lays out early intervention services for families, such as speech or motor skills, provided at home, at Head Start, or in preschool. Here’s a handy primer.

The IDEA is America’s special education law. Basically, it ensures that all kids with disabilities (including CVI) have access to a free, appropriate public education that meets their unique needs and prepares them for education, employment, and independent living.

There are 13 categories of special education that fall under the IDEA. Visual impairment is one of them. For kids with CVI, visual impairment is their primary disability and affects learning in many ways. Their lack of visual recognition:

It takes a strong, collaborative team of parents, educators, and specialists to create an IEP that’s right for your child. It’s important to know and understand your rights. (For a primer on special education law, we like Wright’s Law, a comprehensive resource for parents of kids with disabilities.) 

You have the most knowledge of your child. You are going to be your child’s greatest advocate. Become an expert in CVI.

Kathryne, mom to Carter, 5

The first step to implementing an IEP for CVI is a medical diagnosis. “This way, there’s no argument about whether your child has CVI or not, just how to serve him or her,” says Perkins CVI Project Director Ellen Mazel. 

Request an evaluation

The next step is requesting an evaluation from your child’s school that includes:

The next step is requesting an evaluation from your child’s school. Here’s a sample letter:

Dear Ms./Mr. [principal’s name],

I hope you are well. I am officially requesting a comprehensive special education evaluation in the following areas [insert all that apply from the list above]. Please email the consent form for me to review and sign.

Please email me available dates for the eligibility meeting. Also, please email me the evaluation reports prior to the meeting. I would like to review them beforehand.

I look forward to working with you on behalf of [insert your child’s name].

What’s in an IEP?

IEP layouts differ by state, but their core is the same.

All IEPs contain:

Your child’s IEP serves three important functions:

Consent varies by state, but parents have the right to sign off on an initial IEP before it’s put into place. You’re in control! Don’t sign until you’re fully comfortable and understand all the components. 

Know your rights

Parents always have the right to reject all or portions of the IEP. If the parent rejects all, this means that services will be delayed during the dispute resolution process. When rejecting only portions of the IEP, the school is required to implement the parts of the IEP the parent consented to. Learn more about “How to Consent to Some Parts of an IEP and Not Others.”

IEPs versus 504s

Last but not least: IEPs and 504s aren’t the same. Basically, IEPs have more oversight. To qualify for an IEP, kids need to have one of the 13 categories covered by IDEA. These kids require specialized instruction. Because your child has CVI, a visual learning difficulty that limits access to learning, they qualify for an IEP in order to fill those gaps in learning. Just placing 504 accommodations in place won’t fill those gaps.

An IEP isn’t a 504 plan. 504 plans are much looser. They provide changes to a child’s learning environment to access the curriculum, such as preferential seating or more time for tests, but these kids don’t get specialized instruction. Kids with 504s can have any learning disability, and they can access the curriculum with the right adjustments.

Kids who don’t qualify for the support of an IEP might qualify for a 504. Learn more about the differences between IEPs and 504s here.

Without a medical diagnosis, your school might suggest a 504-style accommodation, such as offering books with large print. But this only scratches the surface. Push back.

“It might sound good, but if your child has low vision and requires large print, it also means they’re missing what’s going across the room,” Mazel cautions. “They’re not going to get that access with a 504.”

That’s just it: Kids rely so much on incidental learning—those little rituals of daily life that teach us about our world.

Kids with CVI need to see their whole environment to learn from it, and that’s why IEPs are so important. On that note: Welcome to our series!

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