Ignite Change: Take the Dyslexia-at-School Survey

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February 2016

by Earl Oremus

Oremus DA Survey Screen Shot 2016-02-21 at 4.02.04 PMIt does not take a majority to prevail, but rather an irate, tireless minority, keen on setting brushfires in the minds of men.Samuel Adams

If enough parents complete the online Dyslexia-at-School Survey, the data it produces could be a game changer in national-, state-, and district-level struggles to improve reading instruction for students with dyslexia. The survey was produced by Drs. Fernette and Brock Eide, co-founders of Dyslexic Advantage, a 501(c)(3) dyslexia education and advocacy organization, and it was published on their organization’s website. “The goal of the survey,” Fernette Eide explained, “is to provide parents with a simple way to document the challenges they face when trying to obtain effective instruction for children with dyslexia through the special education system.  We’re excited because we saw how important that survey data could be in getting dyslexia legislation signed in California.”

With millions of families struggling with the problem, this survey has the potential to produce an archive of tens or even hundreds of thousands of individual case histories that authentically document the dysfunction of the system on a child-by-child basis. When aggregated into a database, the responses can be analyzed to identify clear patterns of strengths and deficiencies in the system as a whole, and responses can even be used for state-to-state comparisons as well.

To understand why such an approach could be a decisive element in the effort to improve reading outcomes for students with dyslexia, we must also understand both the evolution of the current system and the means by which systemic change can be achieved.

What Are the Current System’s Failings?

Since 1975, federal and state special education laws have guaranteed students with dyslexia, under the Specific Learning Disability category, the right to obtain a “free and appropriate public education” from their school districts through the special education system. The reasonable definition of “appropriate education” for children with dyslexia is simple: It is an education that teaches them to read, write, and spell proficiently. However, for thousands of children with dyslexia in every state, and for millions across the nation, that promise has not been fulfilled. For forty years, the system has largely failed to educate students with dyslexia to that standard of appropriateness.

But during those same decades, an enormous body of scientific evidence has accumulated that makes it clear why and how the system must be changed.

The research has established that “appropriate” reading instruction for children with dyslexia requires a) early identification of the problem; b) immediate intervention with intensive, systematic teaching of the phonetic structure of the language; and c) delivery of instruction by well trained teachers.

The research also documented the awful consequences for students with dyslexia when they do not receive appropriate reading instruction. It showed that 85% of those who began receiving special education to remediate reading deficits in the primary grades were still multiple years below grade level in reading six years later when they entered 9th grade. A 2013 study by the National Center for Learning Disabilities showed that “only 68 percent of students with SLD leave school with a regular high school diploma” thereby “contributing to an unemployment rate of 39.5 percent for these adults.” And multiple studies have documented the tragic connections between reading failure, unemployment, substance abuse, incarceration, and blighted lives.

How Do We Ignite Systemic Change?

These research findings have been widely available and frequently communicated by concerned parents and advocates to Congress, to legislatures, to federal and state education departments, to school districts, and to the leaders of education colleges. Why, then, have we made so little progress in achieving the change we seek? 

Partly it is because of all the standard reasons that make any large-scale change difficult: the inertia of entrenched bureaucracies; the perceived self-interest of powerful stakeholders; the cost of funding the changes in a tightly budgeted era. But more importantly, it is because the research evidence doesn’t vote—people do. And, it is only when legislators perceive that they are hearing the message from masses of those voters that they are moved to take on the daunting challenge of legislating major change.

In the case of most of the major social justice changes our culture has made over the past fifty years (think civil rights, voting rights, gender equity, equal employment opportunity, etc.), the key to success has been a mass of the combined voices of the aggrieved and the victims of social injustice—supported by the research evidence and effective advocacy—that has tipped the balance in favor of the change.  

In the case of pleas for effective reading instruction for children with dyslexia, the complaints of the parents of the victims are almost always heard—not publicly, but privately by school authorities in a meeting room in a school or district office. When the complaints are expressed in one-to-one settings within the schools, when they are segmented instead of aggregated and heard publicly, it is easy to dismiss the complaints as isolated exceptions, or as the occasional anomaly that can be expected in any large system. It remains easy for officials to believe that the system is working as intended for the vast majority who are not showing up in their offices.

Even when groups of parents arrange to speak to legislators directly, it is typically only the four or five who will fit in the legislator’s office, or only the four or five who are selected to testify at a committee hearing. Their message can be forceful and accurate, but it is not the testimony of millions, and it is still possible to hear it as a minor concern of a relatively small number of disgruntled parents. 

Let’s Support the Dyslexia-at-School Survey

It is with these perspectives in mind that I write to advocate for wide support for the Dyslexia-at-School Survey. The goal is to collect an archive of information from hundreds of thousands of parents from across the nation describing the failures that they and their children experienced as they tried to get the current system to work for them. With this information aggregated and analyzed into a summary of findings, the advocates of change finally would have the ability to bring the testimony of that multitude of aggrieved victims with them into the offices of school administrators, into the board meetings, into the legislative hearing rooms, and into the halls of Congress to present evidence of the system’s failure and injustice on a scale that makes it undeniable.

In this digital age, the two dozen or so major dyslexia and learning disability advocacy organizations could easily convey this proposal to the millions of parents who look to them for advice and direction. And the thousands of practitioners and concerned parents who care about the issue could easily use their social media networks to post, tweet, like, share, and email their contacts with the request to spread the message. With a little digital-age luck, it could go viral, and the evidence needed to effect the desired changes could be in hand in a relatively short period of time.

Parents, You Can Make This Happen

  1. Complete the survey to add your experience to the database.
  2. Send links to the survey and to this article to the friends, colleagues, child service professionals, and dyslexia advocacy organizations that share your conviction about the need for more effective reading instruction for children with dyslexia.
  3. Share links to the survey and article with your email contacts and your social media friends, websites, or blogs.
  4. Urge your contacts, and especially your connections at the dyslexia advocacy organizations, to replicate your efforts by posting it on their websites, including it in their newsletters, and by using their digital contacts to spread the word.

This is an amazingly low effort (ten minutes to complete the survey) and high reward opportunity for parents and professionals to make a determining difference in the outcome of this long struggle for educational justice for children with dyslexia. The survey is up and running. There is already evidence of its efficacy: The survey results were an important element in Governor Brown’s decision to sign California’s new dyslexia legislation into law.

Start setting your own brushfires. Complete the survey. Rally your contacts to complete it. Convince your governor. Tip the balance in our children’s favor!


National Center for Learning Disabilities. (2013). Diplomas at risk: A critical look at the graduation rate of students with learning disabilities. New York: Candace Cortiella.

Earl Oremus is a certified Orton-Gillingham Language Therapist and the recently retired (after 27 years) Head of Marburn Academy, an independent school for students with dyslexia and ADHD. He serves currently as Headmaster Emeritus and works to promote instructional reform for students with dyslexia.

Copyright © 2016 International Dyslexia Association (IDA). We encourage sharing of Examiner articles. If portions are cited, please make appropriate reference. Articles may not be reprinted for the purpose of resale. Permission to republish this article is available from info@interdys.org.