We recently invited our members to provide feedback about the difficulties, if any, they are facing in trying to qualify their children with dyslexia for special education services.  We crossed our fingers and closed our eyes and hoped no one would respond.  Well, we have good news and bad news.  

I always like to get the bad news over with first, so... We heard from numerous frustrated and despondent parents who simply could not understand or believe that their schools could refuse to help their children learn how to read. The reasons schools are giving fall into 5 basic categories.  Here's a summary:

1.  "Your child isn't far enough behind."  One parent of a first grader wrote:  "My son did not qualify...he was not far enough behind grade level wise. I just recently reread all of the papers from the testing and still find it hard to believe they could not offer him help of some sort."

2.  "We don't test for dyslexia."  Some parents report being told that schools don't test for dyslexia, and the parents just assumed that their only recourse was to pay for an expensive, private evaluation.

3.  "Your child isn't failing." A particularly incredulous parent wrote:  "I was told that bc my children were not failing, they could not give them the 504 or IEP. I told them that I didn't understand how as educators, they could tell me that they wouldn't help my children until they were failing."

4.  "Your child is too smart to qualify for special education." More than a few parents have reported being told their children's IQ's were too high to have dyslexia.  In the words of one mom, "The school refused to evaluate [my daughter] as they said her IQ was too high for special Ed so we had to have her  evaluated privately."

5.  "Dyslexia is a medical diagnosis.  We can't diagnose medical conditions in school."  

Ready for the good news? There are actually ways to challenge each and every one of the reasons above by citing specific provisions of federal laws and regulations.   And over the coming weeks, we are going to post blog entries that address in detail, one at a time, each of these 5 obstacles parents are facing around our state and how to address them.  Of course then there's the issue of what do we DO about the dyslexia even if the school agrees to write an IEP, another huge problem, but let's just take this one step at a time.

For now, you can find fantastic advice on the website of The Dyslexia Training Institute.  Check out their "Tips for getting a dyslexia diagnosis."  We are also still trying to collect more information, so if you have anything to add about your family's struggle to get services in school, please let us know.  Not only do we plan to address the issues here on this blog, but we want to provide this important feedback to state officials as we continue our efforts to make things easier for all families.  And of course if you have any suggestions, tips, or advice for other parents, please share them here in the comments.  That's what Decoding Dyslexia is all about!

Finally, there is a terrific talk coming up next week (1/15 at 6:30pm) sponsored by Parents Education Network - Phoenix Affiliate on the subject of school and private evaluations and your legal rights.   Parents will hear from top notch professionals -- a special education attorney and a neuropsychologist -- about the evaluation process.   Decoding Dyslexia is also having an impromptu "meet up" right before the PEN Phoenix talk -- 5:30pm nearby at La Grande Orange.  Meriah and I would love to see you there.

Hang in there! Remember your child's many gifts and strengths, and have confidence that you WILL figure all this out!

-- Jen 

Last week in San Diego, we joined Decoding Dyslexia parents from throughout the United States and Canada for the annual conference of the International Dyslexia Association.  Collectively, Decoding Dyslexia created an undeniable parent presence at a conference that historically has catered mostly to educators, researchers, and related professionals. Parent representatives from as far away as New Hampshire, Florida, and even Ontario came to connect and share strategies for improving the availability of educational resources for our children.

We learned a lot about brain research, co-occurring disabilities, and testing accommodations, to name only a few topics. But if we had to describe one theme that pervaded our time in San Diego, it would be the importance of building relationships with others who care about the welfare of our children.  And at the very top of the list...? Teachers.

We all agreed that although Decoding Dyslexia is a parent-led movement, it is not a parent-only movement; it is a movement, plain and simple.  Dyslexia is real, it's common, there's lots of stuff that works to help kids with dyslexia learn to read, and they deserve the chance to do so.  

Nevertheless, many of us have encountered obstacles to forging meaningful alliances with teachers on the subject of dyslexia.  To start, most teachers -- even special education teachers -- do not learn about dyslexia in any substantial or material way in college or graduate school or as part of the teacher certification process. So they're either skeptical of its legitimacy as a "thing" or anxious about how to deal with it. 

Some, we hear, are explicitly told (mistakenly or not) that the law does not "recognize" dyslexia, and therefore children with dyslexia do not have a right to special education services.  Still others seem to be under budgetary or other pressures to avoid identifying children for special education of any kind.  For whatever reason, even with the most caring, sympathetic, and talented of teachers, we feel we must whisper "the D word" behind closed doors, hoping that no one is listening, and that we won't inadvertently jeopardize anyone's career.

What is particularly frustrating about this situation is that teachers, we believe, can make an enormous impact by working inside "the system."  We parents can "push in" from the outside, but if teachers also gently "push out" from the inside -- WOW! Imagine what we could do, together, to raise awareness and begin to change the conversation.

So for all you amazing, dedicated, passionate teachers out there, we hope you will join this growing movement. What does that mean? If you're already well-versed in dyslexia, think about ways you might be able to share your knowledge within your school or even your district.  If all this is new to you, consider taking some time to check out some of the resources we list on our website, and share them with your colleagues.  

There are also some terrific documentaries about dyslexia that are available online and through Netflix.  Grab a bowl of popcorn and invite some friends over to enjoy (We promise they're not boring! One of them -- The Big Picture -- actually premiered at the Sundance Film Festival.  And Harvey Hubbell's Dislecksia is hilarious and entertaining.)  Keep up with our activities by following us on Facebook and Twitter. Invite us to give a dyslexia simulation or "What is Dyslexia?" presentation at your school.

Most importantly, advise us: what, if anything, can we parents do to support you in your efforts to bring the undisputed, scientific facts about dyslexia to your community? How can we work together to make a difference?

We recently learned that the Arizona Department of Education has initiated an open process to examine and propose revisions to the state's special education rules, a process that began early this year with the formation of a "Rules Committee." Parents of children with dyslexia, educators, and related service professionals are critical stakeholders in this revision process, as it involves potential revisions to the rules governing evaluation and eligibility for special education under the "Specific Learning Disability" ("SLD") category of the Individuals with Disabilities Education Act ("IDEA").  

The Rules Committee is therefore soliciting input and inviting members of the public to attend a meeting to discuss these and related issues on Friday, November 14th (further details within).   As we explain below, Decoding Dyslexia Arizona believes the Arizona rules related to SLD determination require substantial overhaul.  We hope you will agree and join us in urging the Rules Committee to develop and propose critical revisions to the rules.

School districts in Arizona need guidance related to the implementation of "RTI"

Congress amended the IDEA in 2004 and in 2006 required states to adopt rules permitting local school districts or other local educational agencies to implement Response to Intervention  ("RTI") systems as part of the process of identifying students with learning disabilities.  Under RTI, struggling students receive access to targeted interventions in the context of general education so that schools can determine whether the students' difficulties stem from inadequate instruction as opposed to learning or other disabilities. Although all states, including Arizona, adopted rules permitting the use of RTI, the federal IDEA regulations did not provide specific regulations related to the implementation of RTI, instead leaving those decisions to the states.   

The Arizona Board of Education, however, never issued rules regarding how the RTI process should be integrated with the special education evaluation process. As a result, there exists both uncertainty and tremendous variation in procedures from one Arizona district to another with respect to whether and how to use RTI at all and, when it is used, how the substance and timing of intervention relates to the special education evaluation process.

Some Arizona districts wait too long to evaluate students with potential disabilities

For example, many districts -- not only in Arizona but nationwide -- have insisted that students complete the entire RTI process (spanning many months and in some cases years) before they will consider conducting a special education evaluation.  In the intervening time period, students who actually do have learning disabilities do not receive instruction that meets their specific needs. In 2011, the Office of Special Education Programs of the U.S. Department of Education issued a policy memorandum instructing states that under federal IDEA regulations, districts may not use RTI to delay or deny a special education evaluation. This critical federal guidance has not been explicitly incorporated into Arizona's special education rules.  

Some Arizona districts apply improper criteria in evaluating students for potential disabilities

Beyond the RTI process, schools in Arizona also appear to need more guidance regarding appropriate criteria for the evaluation of learning disabilities. The federal IDEA regulations prohibit states from requiring local school districts to use the "severe discrepancy formula," because the formula -- standing on its own -- is no longer considered a reliable test for the identification of learning disabilities The regulations also require schools to consider a variety of assessment tools and not to rely on only one tool to decide if a child has a learning disability. Yet because of the lack of explicit state rules, parents are reporting that schools and districts throughout Arizona routinely deny students access to special education on the grounds that they do not satisfy the "severe discrepancy" test, without considering additional information.

Recommendations of Decoding Dyslexia Arizona

Decoding Dyslexia Arizona will urge the Rules Committee to recommend, and the Board of Education to adopt, rules that are consistent with the position of the RTI Action Network on determination of specific learning disabilities. We share the overarching goal of the RTI Action Network, which is "to guide educators and families in the large-scale implementation of RTI so that each child has access to quality instruction and that struggling students – including those with learning and attention issues – are identified early and receive the necessary supports to be successful." We urge you to review the position statement for specific details.
 
About the RTI Action Network

The RTI Action Network was originally founded by the National Center for Learning Disabilities and the following partners:

• American Federation of Teachers (www.aft.org)
• International Reading Association (www.reading.org)
• National Association of Elementary School Principals (www.naesp.org}
• National Association of School Psychologists (www.nasponline.org)
• National Association of Secondary School Principals (www.nassp.org)
• National Association of State Directors of Special Education (www.nasdse.org)
• National Education Association (www.nea.org)

Many other organizations have signed on as partners in the network's implementation process, including:

• American Association of Colleges for Teacher Education (www.aacte.org)
• American Association of School Administrators (www.aasa.org)
• American Occupational Therapy Association (www.aota.org)
• American School Counselor Association (www.schoolcounselor.org)
• ASCD (www.ascd.org)
• American Speech-Language-Hearing Association (www.asha.org)
• Council for Exceptional Children (www.cec.sped.org)
• Council of Chief State School Officers (www.ccsso.org)
• Council of Administrators of Special Education, Inc (www.case.org)
• Federal Resource Center (www.aed.org/Projects/resourcecenter.cfm)
• International Dyslexia Association (www.interdys.org)
• IDEA Partnership (www.ideapartnership.org)
• IRIS Center (http://iris.peabody.vanderbilt.edu)
• Matrix Parent Network (www.matrixparents.org)
• Mountain Plains Regional Resource Center (www.rrfcnetwork.org/mprrc)
• Northeast Regional Resource Center (www.rrfcnetwork.org/nerrc)
• School Social Work Association of America (http://www.sswaa.org)
• Teachers of English to Speakers of Other Languages, Inc. (www.tesol.org)
• Southeast Regional Resource Center (www.rrfcnetwork.org/serrc)
• Urban Special Education Leadership Collaborative (www.urbancollaborative.org)

Lend your voice

The Rules Committee announced recently that it will host an open meeting on Friday, November 14th, 2014 from 10:00am to 12:00pm at 1535 W. Jefferson Street in Phoenix regarding its proposal for new rules governing special education evaluations, eligibility, and IEPs.  Prior to the meeting, members of the public may provide written input by sending an email to the following address: AZBoardRuleCommitteeInBox@azed.gov. The Rules Committee intends to submit its recommendations to the Arizona Board of Education, which has legislative authority to enact revisions, some time in the spring or early summer of 2015. 

Please take a moment to review the position of the RTI Action Network and consider urging the Rules Committee to propose an overhaul of the SLD determination rules.  And as always, feel free to begin or join a conversation or provide suggestions or input by submitting comments below.