ADVOCACY TOOLKIT

So, here you are, about to walk into a 504 / IEP meeting for your child and you're asking yourself BIG questions.

The questions vary from how do I get the proper accommodations my child needs?  How do I know for sure my child is getting the right services?  How do I know, if my child needs an IEP, or if he / she has an IEP, then how do I know what kinds of goals are GOOD versus BAD?  

You may also find that you are asking yourself these questions each and every time you walk into a meeting.  Trust us, that's normal.  As you learn on this journey you will constantly be seeking new things, asking new questions, and you will always be fighting the good fight.

With each meeting, there are specific things you want to focus on, high level, but bear in mind, the type of meeting you are having may have very different outcomes depending on these questions. 

 

If your child is on a 504 plan, goals are not written and therefore targeting the issues below is quite challenging, meaning the school does not bear any responsibility in achieving the end goal of a successful reader; so as you pursue the questions below, bear that in mind.

For more information on the difference in 504 and IDEA please see this link: https://www.thedyslexiainitiative.org/504-v-iep.

1) On what grade level is your child performing?  What is the measure of grade level?  When considering grade level consider all co-morbid conditions, example dysgraphia, meaning, just because a child is in the 4th grade and reading on a 3rd grade level, is their writing ability at a 3rd, 4th or perhaps Kinder level?  These are important distinctions and must be understood and evaluated in order to support the child.

2) Understand what grade level(s) your child is performing on, this helps you drive the goals as grade level mastery needs to be the primary goal if the child is of average intelligence.  There are a few key distinctions that need to be made here though:

a) Bear in mind, from a bell curve perspective, an average IQ ranges from 85-115.  What is the IQ of your dyslexic child?  The reading portion of any evaluation will drag down the true IQ measurement of the child and suppress it, therefore it may not be an accurate reflection of the child's intelligence. 

b) What is your child's greatest challenge in their dyslexia, some call this sub-type, if this is even relevant for your child (Note the Understood.org article on this subject, https://www.understood.org/en/learning-thinking-differences/child-learning-disabilities/dyslexia/different-types-of-dyslexia) and what co-morbid conditions exist and how do they relate to each other?  Bear the correlation in mind when working for goals.  For example, one of our leader's has a dyslexic child that has orthographic processing issues in both dyslexia and dysgraphia.  They spent time learning about what orthographic processing means and how that impacts her child's dyslexia remediation, meaning, what will be the biggest struggle and can it be fully overcome, and focuses on goals that are meaningful considering the orthographic challenges.

c) Grade level determinations in reading, writing and math are critical for understanding how to shape goals.  Just because a reading level is a year behind does NOT mean that writing and math are the same.  The assessments and sub-assessments necessary to render these grade level approximations should be a part of the measurements taken in the evaluation of the child as well as the ongoing progress monitoring.

3) Is the school district (past, present and future) one that has adopted Balanced Literacy programs for it's General Education program?  Balanced Literacy programs can instill very poor reading habits that are hard habits to break once ingrained in a child.  Understanding the influence Balanced Literacy has on the child is critical in shaping goals and understanding what remediation needs to take place.

4) How is the district measuring accuracy and fluency?  Accuracy is how accurately are they reading the word and fluency is sort of a field of land mines.  While DIBELS provides a great measure for accuracy and fluency, be careful about falling into some traps.  Here are a couple of articles to help: 

a) Should We Be Using Words Correct Per Minute? by Timothy Shanahan: https://www.shanahanonliteracy.com/blog/should-we-be-using-words-correct-per-minute?fbclid=IwAR3Le0UrVVOeuzmKZ5CUqqNDkB9MDKmsZK1YqUXCH8_X-zqYXZeVkaQEjUU

b) Making Kids Read Fast is NOT the Goal of Fluency Instruction; Making Meaning Is by Timothy Rasinski:  https://therobbreviewblog.com/uncategorized/making-kids-read-fast-is-not-the-goal-of-fluency-instruction-making-meaning-is/?fbclid=IwAR3d_JIHVnAr9dRJXaPc4hFHP74-6FaJHU4cJ_wJaom1YinGGWW5vauqQCk

c) I think the thing to bear in mind more than anything is comprehension when it comes to accuracy and fluency.  That is the real measure.  So bear in mind if the district is focusing on speed, then comprehension is not being achieved.  Knowing your child and where they are struggling will help you focus on how much time you want to spend on these two aspects and how you want to shape potential goals.

5) What dyslexia program(s) are they using, what programs are available to use, and is it being applied to fidelity and with the proper teacher to student ratio?  Also call the publisher of the program and ask these same questions, as well as the approximate designed duration of the program, meaning is it a 3 year program, or a 22 week program, etc.  Understanding what program(s) are being used will help you gauge the potential success for proper remediation.  Do not be afraid to call the publisher (we highly recommend that you do so) and what all should be delivered in the reading program.  Compare this to what they school district says should be delivered.  That delta will help you navigate these waters.

6) How is remediation going to be delivered, by a teacher or by a computer?  This is a clear distinction that needs to be made.  Most advocates are not a fan of computer based remediation.  This is not the same as meeting with a tutor over Zoom or Skype, but actually logging onto a computer to do exercises and receive instruction.  While we are fans of Nessy and Nessy is a computer based program, we are talking more specifically about everything else.  Remember that nothing will replace the value of 1:1 instruction in person with a qualified teacher and in-person needs to be the ultimate goal.

 

7) What is the training of the person providing the dyslexia remediation, as well as any affiliated credentials?  This is a tricky one.  There are various designations and trainings via the International Dyslexia Association that educators can pursue that can qualify them as a Licensed Dyslexia Therapist.  Consider them the gold standard of educators.  Sadly what most districts engage in is minimal training, in many cases three days, then placing a teacher in a dyslexia classroom to deliver instruction on the program they were trained on and calling them a dyslexia teacher.  Understand that they are not qualified individuals and can only teach what they have been trained.  The core thing to remember is as a child progresses through lessons on a program, that does not mean that mastery is being achieved; so don't fall into that trap.  Mastery is measured through assessments like the GORT and others, not by checking off lessons in a programs.

8) How is the GenEd environment going to support the remediation the child is receiving?  Is your child going from a dyslexia class with a dyslexia program into a Balanced Literacy environment where they will be given "strategies" that undermine the dyslexia instruction?  Will they have a para to provide support via help reading instructions, questions on exams, questions the child may have in class?  Lots to think about here.

9) Can the school offer in-class support as well to help the child and alleviate any extra support burden from the teacher?  Sometimes our kids ask a lot of questions.  Reading class is not the only class in which dyslexia is impacting the child.  The whole world is reading, therefore so is all of school.  If the child has a low working memory, maybe they can only take in 2-3 instructions at a time, not 9-12.  Maybe they need frequent reassurance they're doing the work right.  Maybe...a whole lot of things.  Each child is individual and so is their needs within the classroom. One teacher with a whole lot of children in their class may find this extra need of support overwhelming.  A para or some level of in-class support may make a huge difference in the life of the child.  Be careful though, you don't want to ostracize the child.  Make sure the extra assistance is as low-key as possible.  As a suggestion, the para can walk around and assist several children with their assignment to make it not seem like they're only there for your child.  

a) Note that by asking for a "para" that you are not asking for an IIS (intensive individual support or 1:1 aide).

10) Understand the time allotment where dyslexia services will be provided and how that aligns to the designed fidelity of the program.  Also, for older children (not elementary aged) how does this impact class load, i.e. electives, mandatory classes, study hall, etc.  Fidelity is the manner in which the program is to be delivered to be successful, meaning if the program is designed for 1:1 instruction for 45 minutes a day for four days a week, anything less is NOT fidelity; therefore successful delivery of a program is dependent on it being applied to fidelity.  Anything less than fidelity and there's really no point in delivering the program.  Some states mandate fidelity in their laws.  Regardless of what state you are in, you want fidelity.  Ask the school to describe all parts of the program.  The challenge is that if a school is not utilizing the whole program then even if they are providing all of the prescribed minutes, they still are not providing fidelity.  

11) Each state has defined grade level expectations.  The child needs to be measured against these objectives in order to identify holes in understanding and these holes need to be a part of the objectives of goals.  Review every year and analyze against all objectives from Kinder on.

12) What accommodations are best to support the child? Are those accommodations measured to ensure success?  We have a robust list of accommodations here: https://www.thedyslexiainitiative.org/accommodations.  Accommodations will change as the child ages and grade level content advances.  Many see knowing what the right accommodations are as one of the biggest parent advocacy challenges.  I encourage a few things:

 

a) As a lot of questions of the teachers about the average day and the needs and / or "issues" the child has and shape accommodations around that feedback.

b) Consider an in-class observation, bearing in mind your child may be on their best behavior because Mom and Dad are watching, but maybe, just maybe, you will see something that may help.

c) Ask the child a lot of questions.  This will take time and patience and good communication with the child.  Children with anxiety may not be willing to engage in these conversations.  I always encourage teaching your child to be their own best advocate and having them be a part of the conversation about, "What can we add in to make this less stressful for you?" may make a big difference in getting the best accommodations.

13) What assistive technology, both low tech (graphic organizers) and high tech (iPads, computers, speech to text) is best to support the child?  Bear in mind that assistive technology is it's own, separate evaluation and should NOT replace actual remediation or achievement of goals.  We recommend that full AT evaluations be done sooner rather than later to ensure tech isn't delayed when the child suddenly is in critical need of it as a tool.

14) Ask for lesson plans, road maps, testing timelines, etc. to be communicated to you on a regular basis to allow for planning at home.  The more you know the more you can help at home.  Finding out about papers or tests just a couple of days before hand may not assist in any supports you need to provide at home.  Granted, this is a hard ask which will usually end in denial, but ask it anyway.  You are the parent and the more you can support your child, the greater their odds for success.

15) Evaluate state standardized testing, understand your rights, and make the best determination for your family if opting out is the right solution or not.  Whether or not you communicate this with your school will depend on the laws in your state and your own personal feelings.  This decision is person and no one has the right to judge you.

16) Understand all data points which the district is taking on the child and what those data points are telling you.  As the parent you are entitled to all of the information in your child's file.  Do not be afraid to ask for copies, even on a moment's notice.  And, bear in mind that what I mean by understand is that Google, and your dyslexia community are the best resources to that understanding.  For example, if they tell you fluency is the number of words read correctly per minute, you know that isn't a good measure because it does not contribute to the more important piece of reading, comprehension; it's simply reading for speed for the sake of reading for speed.

17) If you are told that action "A" has to be done before action "B" then ask for a copy of the policy.  If you are told anything that is counter-intuitive, or against the advice you've been given by friends, advocates, heard on a webinar, etc., ask for the policy or where it exists in the law.  You want book, chapter and verse.  If they are unable to produce any documentation, then hold your ground, but remember to never be dismissed out of being told you can't have something.  Always ask for the proof.

18) Lastly, when asking for more services, often times you may be told  that it means more time out of the classroom so kids will miss classes and fall farther behind.  If a program states 90 minutes a day, then a younger child can and should be pulled from a social studies or science class, and it is ok.  All of that material will be taught again in high school.  

This is just the beginning and this is a LOT.  I realize that.  You can print off the above and take it with you, take notes against it, and go from there.  We are always here to help if you have any questions.

 

 

 

 

Tools from the International Dyslexia Association:

The International Dyslexia Association has a great tool kit they call The Advocacy Toolkit.  It contains research to support Structured Literacy implementation, resources to support implementation, organizations focused on reading, beyond dyslexia laws presentation slides and influencing policy in your school district infographic.  The link to this toolkit is:

https://dyslexiaida.org/advocacy-toolkit/

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