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CVI whole-child assessments drive the IEP

Candid advice about how to navigate the assessment process and advocate on behalf of your child with CVI

Assessments drive the IEP

For kids with CVI, assessments are critical. Remember our mantra: Assessments drive the IEP! They provide the most thorough appraisal of your child’s educational needs. We also know how difficult this process can be. Use this guide as your foundation and framework as you advocate on behalf of your child.

The most common vision-based assessments are:

The role and responsibility of the teacher of the visually impaired (TVI) is to lead your child’s educational team by sharing essential information from these assessments and to assist in the IEP’s development.

Data drives change. Data. Data. Data.

Molly, CVI mom to Levi, 6

We chatted with Angela Gowans, a Massachusetts-based educational consultant who specializes in assessment advocacy, for her candid advice about how to navigate the process.

How do you request a special education evaluation?

Over email.  Here’s a sample request, which you should tailor for your child:

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 below]. 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 before the meeting.  

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

Areas for evaluation for special education services:

Why are assessments so important?

They drive the IEP. We don’t know what a child needs without assessments. We should never make assumptions about what a child’s needs are or what their capacity is.

But, especially with COVID, schools are backed up with assessments. They may say, “We know what this kid needs. We’re totally fine. We’re not going to do the assessments.” And parents may think, “OK. I’m not going to put my kid through that.” But if we don’t have information, then how can we develop an individualized program for them?

Without the assessments, we really don’t have the information for an IEP.

How should parents approach advocating for comprehensive assessments for CVI in particular? How do you know that the assessments that you’re getting are right for CVI?

Find out who’s going to conduct them and their qualifications. Find out how much experience they have. Just because they’ve gotten some training in CVI doesn’t mean that they’re experienced in it.

Ask: “Can we understand their training and how it applies to my child?” Any time that there’s pushback, that’s a blinking red light. The very best people who feel confident about what they’re doing, who feel confident about teaching and assessing, are the ones who say, “Sure, let me get you that.

If someone really is competent at their job, they want to share. They want to tell you how they set up their classrooms. They want to tell you how they assess. They want to tell you exactly what training they have.

[At Perkins, we recommend that educators should:

Are assessments something that a family’s school district is required to provide?

Federal law is very clear that the district needs to assess in all areas of a suspected disability. Suspected is the keyword. You don’t need a diagnosis.

If you already have a diagnosis, great. If you don’t, you can say ‘suspected disability.’ CVI falls under that, and it impacts a child’s learning. Your school has to find an expert and create a program. 

But what if there are roadblocks?

Then you follow up with a comprehensive letter of no more than three paragraphs. It cannot be at length; no one’s going to read it. List what you disagree with: Perhaps you want more information about the TVI’s training and qualifications. You’ll want to outline your concerns in a very concise way. I love bullet points!

Send it to your team chair liaison, who is the special educator in charge of your team meetings. It’s called different things in different states. I would also send it to your special ed director. Email is your friend: It’s timed, dated, stamped. It can’t get lost in the mail. It’s documentation in writing. 

Don’t send anything without sleeping on it. Sleep on it, and then look for any sort of emotion the next day, and take the emotion out. Avoid living in that emotional area.

As you negotiate, write, “Thank you very much for giving me…“ Maybe they’re not going to give you the TVI’s resume, but they’re going to give you a list of trainings. You need to decide if that is a fight you’re going to fight. You can’t get everything you need or want, and you’re not going to; it’s just the reality.

How do parents note bias in assessments that rely on vision — for example: psychological, educational, speech? Often, families are stuck with inaccurate assessments that show a low IQ and low skills because an assessment required visual skills.

You have every right to reject the school district’s findings and to request, under federal law, an independent educational evaluation (IEE).

Ask for the reports ahead of time so you can read them. Some states stipulate a certain timeline for getting reports. Some don’t. Still request it. If they give you the reports ahead of time, read them and then go in and really know what you’re talking about: “This doesn’t even sound like my kid, these aren’t the skills that they have at home.

This meeting is really to point out where you disagree, get through it, get to the end. Verbalize it, and then follow up with another email of, “I disagree with these reports and the findings.“ You don’t have to disagree with all of them. 

Talk about why you disagree and which evaluations you disagree with. It’s really important to say, for instance: “I disagree with the psychological, the educational, the CVI.

You have every right to have an IEE in those areas. You also have every right to get a private evaluation with your own funds. 

[If this seems daunting, know that the IDEA has procedures that allow you to obtain an IEE at public expense. If your district doesn’t have resources or personnel to conduct the proper evaluation identified by your IEP team, you can request that they obtain a private evaluation on your behalf. Learn more about this process, and what happens if the school district pushes back, here.]

How would an IEE differ from an initial assessment?

The school district is supposed to give you a list of evaluators, not on the payroll of the school district. They should be completely independent. You don’t have to go with the school district’s recommendation. 

What are your thoughts on the disability category for students with CVI? What should the disability impact statement include?

A disability impact statement needs to be clear, written in language that everyone understands, and really descriptive. Look for clarity, conciseness, descriptiveness, and no lingo that could confuse people.

The disability category should be ‘sensory impairment,’ which includes vision and hearing. I do think that category captures CVI. Lots of people want to put ‘multiple disabilities’ down. I spend a little bit of time on this in meetings. It doesn’t tell you a lot of information. It should be really descriptive and inclusive. 

Again, the assessments drive that disability impact statement. We don’t want to make it too long because no one will read it. The point of an IEP is that a teacher picks this document up and says, “I know what’s expected of me. I know and understand what this child needs.”

We want people who aren’t a part of the meeting—a general ed teacher, music teacher, gym teacher—to be able to pick up this document and say: “Got it.”

Example of a disability impact statement for a child with CVI

Primary disability: Sensory/Vision
Secondary disability: Neurological

Kai’s visual impairment, along with his challenges responding to language and his reduced expressive communication skills, impact his ability to absorb classroom instruction, communicate his wants and needs, and communicate socially with others.

In addition, CVI further complicates the way his brain processes visual information. He has difficulty with spatial awareness, motion perception, orientation, visually attending in the presence of visual clutter and competing noise and distractions, and visual guidance of the arms and legs. Kai has difficulty processing detail and visual recognition of shapes, objects, and symbols. Kai is also unable to recognize faces and interpret facial expressions and body language. He needs significant assistance with orientation in both familiar and unfamiliar places as well. 

Kai’s complex profile greatly impacts all areas of life and learning. It is crucial that his program include specific instruction that best suits his profile and his learning needs.

Due to Kai’s neurological and CAPD disabilities, all academic areas are difficult for him to access and concepts take an extended time to acquire. Kai’s disability of CVI makes processing visual information difficult, and he tires easily after 15 minutes of visual processing.

Check out this resource! Learn more about how assessment is the most important part of the IEP process from the Brain Recovery Project. This guide is geared toward families of children who’ve had epilepsy surgery, but offers valuable resources including a comprehensive assessment spreadsheet (scroll down to the bottom of the page).