Thanks to public awareness campaigns and activism over the last few years, more and more people are becoming familiar with the term "dyslexia." This is especially true here in Arizona, where -- for the first time ever -- a definition of "dyslexia" was just added to our state education code.
So when parents notice their kids are having trouble learning to read, many of us, with a simple internet search, can figure out whether our kids are showing some "red flags." If you've seen red flags and want to find out whether your child may have dyslexia, here's what we suggest.
For those with extra money or great health insurance
If money is absolutely no object, consider getting a comprehensive neuropsychological evaluation from a private neuropsychologist who works with children. The cost varies depending upon how much testing is needed, where you live, and other factors, but it's not uncommon for these to cost a few thousand dollars. Don't just choose anyone, though. Talk to others in your community and figure out who really understands dyslexia. There are many talented "neuropsychs" but that doesn't mean they all "get" dyslexia.
Some insurance companies cover neuropsychological evaluations. Check your policy, and then see if someone good in your community is contracted with your insurance. If you're located near a major children's hospital, you might be able to find someone really good there and get it covered. The down side is that there are often very long waiting lists to get in, so you might have to wait several months.
For everyone else
If you're not rolling in dough and can't use insurance, do not give up! You can get an equally good evaluation at no cost to you through the public school system, but it just might take a little longer and require some perseverance. Here are the steps to follow:
1. Request an evaluation
You are entitled to a free evaluation no matter where your child goes to school -- whether it's a public, private, or charter school, or you home school. The tricky part is to figure out who's responsible for doing the evaluation so you send the request to the right place. The gist is this:
- If your child is in public school, send the request to the school principal, and copy the head of special education for your school district.
- If you home school, send the request to the public school your child is zoned to attend.
- If your child attends private school, start by calling the school your child is zoned to attend if he/she went to public school and explain your situation. They should tell you where to send your request.
- If your child goes to a charter school, send the request to the head of the charter school and copy the director of special education for your state.
For those in Arizona, a great resource for model letters requesting an evaluation (as well as answers to many other important questions about your rights) is a self-advocacy guide published by the Arizona Center for Disability Law.
2. Do NOT take "no" for answer!
Sometimes parents get some push back when they request an evaluation through the public school system. Do not fall for these common excuses:
- We do not "recognize" dyslexia -- that's a "medical issue."
- We will not conduct an evaluation because your child is not failing.
- We will not conduct an evaluation because your child hasn't completed certain intervention programs we're trying.
- We will not conduct an evaluation, because your child is in a gifted program.
- We will not conduct an evaluation for special education, because all your child needs is a "504 plan" so she can get "accommodations."
If the school outright refuses to conduct the evaluation, you need to get in writing the reasons why they are refusing. The way you ask for this is by saying you want "Prior Written Notice." When they realize they have to put their reasons in writing, many times schools take a closer look and realize they should conduct the evaluation. If you do actually receive "prior written notice," consider finding an advocate or an attorney to discuss possible next steps.
3. Make sure the evaluation is complete.
The law says schools must evaluate in all areas of suspected disability. This means schools must test for dyslexia if you have reason to suspect it. They may refuse to use the term "dyslexia." They may say they will only test for a "Specific Learning Disability" in reading, but that's okay. Don't get into a fight about the word. Just make sure they test all the areas that are necessary to determine if a child actually has dyslexia. Here is a list of what a good dyslexia evaluation ought to include, according to the Dyslexia Training Institute:
- Phonological Processing
- Oral Reading
- Silent Reading
- Single word reading
- Processing speed/rapid naming
- Writing sample
- Evidence of cognitive ability
- Review of school records
- Thorough review of family and school history
If you disagree for any reason with the report you receive after the evaluation is complete, request an "IEE" -- an Independent Educational Evaluation. This is basically a private evaluation that is paid for by the school district. You are entitled to this if you disagree with the evaluation, or if you feel it is incomplete. The self-advocacy guide walks you through the steps for doing this (pp. 97-98).
4. Determine whether your child is "eligible" for special education
Request a copy of the "criteria" the school district or charter school uses for determining whether a child has a "Specific Learning Disability." You don't need the federal criteria -- you can find that here. But the federal rules required states to adopt their own, additional criteria, and you need to find out what that is for your state. Here in Arizona, the state decided to allow local school districts to adopt their own criteria, so it's quite possible a child could be found eligible in one district but not in another! Be persistent about getting this if for no other reason than to let your school know that you are going to pay close attention!
If you are told your child is not eligible for special education, ask the school to explain why in writing ("Prior Written Notice"), and then consider how you want to proceed.
5. My child is "eligible." Now what?
That needs to be the subject of another blog, or perhaps a book!
Very generally speaking, for those who attend public or charter schools, your child can receive special education in school. If your child attends private school, or if you home school, you may be entitled to some limited support from the public school system, but not nearly as much as if your child attends a public or charter school. You may want to begin researching tutoring programs in your community, or programs that help you teach your own child. Use your new dyslexia evaluation as a road map for determining what types of interventions your child needs to make progress.
Most of all, if you confirm your child has dyslexia, do not despair! Grieve a bit, for sure -- your child has some challenges ahead, and so do you. But you are not alone. Dyslexia is said to affect nearly 1 in 5 children. We are many, so join our community. Together, we celebrate our children's strengths and support one another in navigating the more difficult parts of this journey.