Early Screening for Dyslexia Legislation is a life changing opportunity!
Massachusetts legislators will consider Dyslexia Legislation this year and we are asking you to share your experience with your legislators at the State House.
At age 5, before formal reading instruction, students with a neurobiological predisposition to a reading disability called dyslexia can be validly and efficiently identified as "at risk for dyslexia". Researchers who have already demonstrated the validity and efficiency of screening in a 5 year National Institute of Health funded study, here in Massachusetts, tell us that the screening can take less that 30 minutes. States like CT, NJ, RI, and NH have already passed dyslexia legislation.
Early indicators are highly effective. All students need the foundational skills for reading and the screening will help teachers use interventions that target those pre-reading foundational skills like phonemic awareness, rapid automatized naming, and letter sound knowledge that a student needs. Dyslexic students will demonstrate deficits in these early indicators at age 5 and can begin effective evidenced based instruction while it is most effective, before and while learning to read.
This is a ground breaking idea since many people mistakenly believe that dyslexia can not be identified early. Current neuroscience research tells us that not only can we identify at age 5, but that early indentification and intervention is a much more effective way to help these students. Learn more about this research here:
The "Paradox of Dyslexia" has been that students are not identified until they fail, but interventions are most effective before they fail. The failure and stress of trying to read without the needed intervention results in stress and anxiety for our youngest students before they have a chance to learn to love school. How real is this stress? Watch the video with Dr. Roberto Olivardia below to learn more about the social emotional factors of dyslexia.
Currently in Massachusetts thousands of students are not reading proficiently by 3rd grade state assessments, MCAS or PARC. We know they are struggling but have not identified which students are at risk for dyslexia. Eventually, Massachusetts identifies many students after reading struggle and failure as needing services, but does not have a system to consider dyslexia before the stress of failure and the process of advocating for a full evaluation, wasting years.
First students must struggle and fail, sometimes through multiple tiers of instruction. Then students are classified with various less accurate terms. Most parents report that without an outside evaluation some schools refuse to even discuss dyslexia as a possibility. How can they get the help they need sooner and specific to the actual disability dyslexia?
Dyslexia is neurobiological, students with dyslexia arrive at kindergarten and first grade and are not ready to learn to read without early direct instruction. These students can be easily identified with a screening process that includes: 1. Phonemic Awareness (PA),
2. Rapid Automatized Naming (RAN) and 3. Letter Sound Knowledge (LSK). Current early intervention rarely includes what is specifically needed for dyslexia.
Dyslexia is well researched and known to be neurobiological and evidenced based interventions are also well identified. You can learn more about that here:
Statistically, according to the National Institute of Health and neuroscience research, dyslexia is the most common and well researched cause of reading failure. So the majority of students that make up the students with disabilities line are most likely students with dyslexia.
Nevertheless in Massachusetts, dyslexia is not considered until after a child is failing. Students with dyslexia are often undiagnosed or misdiagnosed. Schools often refuse to use the word without an outside evaluation. In most cases, schools use the more broad term Specific Learning Disability (SLD). This broad term has frequently been determined to be subjective and used differently in various districts across the state. Other areas are also used subjectively. In Review of Special Education in the Commonwealth, Report Commissioned by Massachusetts Department of Elementary and Secondary Education it is reported that clear more specific identification would improve services. Instead we learn that in our state:
"local school districts are given substantial flexibility in their interpretation of these specific disability categories. In some cases, this appears to result in children with the same underlying issues receiving different disability labels in different school districts. This represents a potential impediment to the effective delivery of services to children and also presents challenges for our analyses. Based on what appears to be the relative diagnostic subjectivity for certain disability categories across the Commonwealth, we combined – as described in Part 1 of this report – children in the Specific Learning Disability, Health and Communication disability categories into one ‘High Incidence’ disability category in some of the analyses reported below."
Families, teachers, researchers and students of the Commonwealth would all benefit from more clarity. Dyslexia is defined and well researched by the National Institute of Health. Congress in the recent READ Act, in IDEA and ADA laws mentions dyslexia specifically as a particular disability under the SLD broad category. Providing this definition would be very beneficial.
The Office of Civil Rights and the Department of Education issued Dyslexia Guidance in October 2015 informing states that there is no reason to avoid the specific disability name, dyslexia and also that when using SLD category the actual disability may inform decisions on how to provide services. Decoding Dyslexia has adopted the hashtag #SayDyslexia to raise awareness that naming dyslexia can guide better, more effective delivery of services.
Please complete this form to let us know who has been contacted so we can have other legislators and staff follow up.
For the Massachusetts House use this link: goo.gl/forms/W04xYxCxie1NIeG82
For the Massachusetts Senate use this link: goo.gl/forms/ES3F02dZ7jTITImF3
By Nancy Duggan
Legislators in Massachusetts are beginning to #SayDyslexia. DDMA says thank you!
Thanks to the many families that continue to speak up and explain the challenges of dyslexia faced by public school students in the Commonwealth of Massachusetts, and the important and most valued help of dyslexia experts in the fields of neuroscience, literacy and speech and language, we have made another step toward improving education for students with learning disabilities, especially dyslexia.
We are not there yet but we are making progress!
On Friday, An Act Relative to Providing Screening for Dyslexia was moved forward (But not yet passed into law) in a redrafted version (A NEW BILL NUMBER WILL LIKELY BE ANNOUNCED THIS WEEK) .
As we wait to see what the next step will be. I urge everyone to look at this Bill which amends an already established law, very carefully.
There is much to be happy about; I want to point out some of the positives:
1. Our legislators have heard our concerns and are taking legislative action. It is very clear that our efforts are not wasted and the #SayDyslexia and #ScreenDyslexiaMA
2. The title of the Bill clearly states the intent of the law: "to Provide Early Screening for
3. As currently written, the law includes "a voice for families whose children are struggling with dyslexia in the public school system and requires research-based
We have traveled far to get this to happen and we need to keep it moving in a positive direction. Initially when you read the bill you may, as I did, ask:
Where is the definition? Why this Panel? Or have other concerns with the specifics of the legislation.
Although it is not the immediate result of screening by next year, that legislation in NH recently passed; It is something that we have not had ...it specifically says "early screening"
and if it passes:
directs by law the established Early Literacy Panel to take:
"steps to implement the research-based recommendations contained in reports written by experts in early language and literacy development with respect to reading disabilities including dyslexia; provided that, in developing its recommendation, the panel shall solicit at least one organization representing families with dyslexia."
It could still change as it goes through the legislative process.
We have questions - but lets support this while we ask them and hope that our questions inspire clarification and a more effective outcome.
1. What is the definition to be used when discussing "early screening of dyslexia"?
Specific Learning Disabilities includes dyslexia, so not all specific learning disabilities are neuro-biologically dyslexia, and the term "reading disabilities" is also broad and not specific. The brain imaging research and neuroscience that enlightens us is fairly recent in scientific terms, and is specific to the scientifically defined dyslexia using IDA/NIH definition.
If we are part of the conversation we can explain more about why this matters. We are fortunate that the expert research laboratories in our state studying dyslexia can provide, and have provided, testimony, guidance and a desire to collaborate with educators and share the latest accurate research for dyslexia.
2. What will it mean for dyslexia screening to be considered by the panel? General screening is already part of the process in most schools (but not for dyslexia ). The current Early Literacy Panel, by law advises about screening, and training of teachers and early educators to screen. Let's hope that if we proceed we will see not only screening protocols for dyslexia endorsed by the panel, but guidelines and training of how to screen for early educators and teachers. Research clearly supports early intervention and we will have to stick with this to see it unfold. I think this is a good step.
3. The current Literacy Panel, and the Third Grade Proficiency Law that establishes it includes the following:
on the alignment, coordination and implementation of, including, but not limited to, the following areas:
(1) strategies for evaluating the effectiveness of curricula on language and literacy development for children in early education and care programs and grades pre-kindergarten to third grade, inclusive, that
(i) is anchored in rich content;
(ii) uses a wide variety of types of text to support content under study;
(iii) emphasizes the role of oral language and discussion in promoting early reading skills; and
(iv) contains a balanced instructional design focused on developing both meaning-based skills, such as comprehension, conceptual knowledge, vocabulary and code-based skills, such as letter knowledge, letter sounds and word reading;
For students with dyslexia aligning with this specific criteria may or may not align with what is the necessary research evidenced based dyslexia instruction.
How can the panel ensure that these criteria are adjusted for the evidenced based criteria for dyslexia?
We can bring that question forward with us, guided by dyslexia specialists in instruction.
Massachusetts has IDA endorsed programs and some excellent literacy experts who focus on dyslexia. Fortunately they are committed to helping move early screening for dyslexia in Massachusetts.
So now what do we do?
1. Call your legislator and thank them for supporting Dyslexia Legislation.
2. Remind them that the scientific definition matters not only for screening but for the current students struggling and ask them to consider that as they go forward with their support for dyslexia legislation they remember that current students would benefit from acknowledging an scientifically accepted definition, like the definition used by the National Institute of Health. This is an important step in better outcomes for students with dyslexia
and all students with learning disabilities.
Reading, more neuroscience than rocket science; or what the telescope and brain-imaging have in common.
Nancy Duggan, Executive Director, DDMA
Some children do not read proficiently by third grade even when parents and teachers seem to be doing all they can. What does neuroscience tell us about this problem?
Researchers have been studying the process of how we learn to read for over 30 years using Neuroscience. That is not a long time in the world of science. We have been studying the planets scientifically since Copernicus in the 1500s. With that kind of time invested, no wonder we could send rockets to the moon before our kids were born; but teaching them to read remains a challenge.
What we now call dyslexia was first mentioned in the 1870s. But just as Copernicus and his telescope started scientific study in the 1500s, proving that the earth went around the sun, which over time lead us to walk on the moon, using neuroscience and brain imaging technology to study dyslexia has advanced what we know about how brains learn to read. These advancements, if transferred to the classroom, could improve reading for dyslexic students.
Neuroscience1 recently has been making great strides in dyslexia research and MRI technology has played a part. In particular, fMRI technology which uses a Magnetic Resonance Imaging process to make observations of how brains are functioning
(the f in fMRI).
Scientists are able to evaluate the areas of brain activity and the amount of energy that our brain’s specialized areas are using. There is not one area of the brain that is dedicated to reading. Neuroscientists explain that there are many areas of specific brain activity that naturally process vision, language and/or memory. These areas must be taught to work together, these multiple areas communicating through brain pathways are built by learning.2 By using many fMRI images together neuroscientists observe changes and developments that indicate how these regions are working, and working together, in good and poor readers. Our brains are constantly adapting and changing as we learn and the ability to make these observations has provided evidence of the differences that can naturally occur between individuals trying to adapt and learn the process of reading. Neurodiversity or cerebrodiversity are new terms to reflect the differences in healthy functioning brains that process differently from each other.
Understanding the differences in brain processing, in what Dr. Nadine Gaab describes as the typical and atypical (ADHD and/or Dyslexia) reading brain, is a valuable consideration when choosing instruction, intervention and assessments for reading instruction of all students. Dr. Gaab and colleagues have found that these differences are present at birth and Dr. Gabrieli and Dr. Norton provide evidence that as early as kindergarten, it is valid, effective, and advisable to screen for these differences and actively ensure that
instruction is specific to the needs of these children. They are not alone in their research and there is ample evidence for the neurobiological existence of dyslexia.
Unfortunately, like many folks in the time of Copernicus who did not at first believe or understand that the planets went around the sun because they had been taught that the sun circled the earth, many educators have been told that dyslexia is not real or doesn’t matter. Likewise, even when the word dyslexia is used, parents and teachers who are using the word without the current neurobiological meaning and the implications of the latest research may not find the specific instruction that will be effective.
For example, the SLD (Specific Learning Disability) Module of instruction for the Massachusetts Department of Education incorrectly describes dyslexia as a common term that is used for “the reading related manifestations of learning disabilities”.3 This highlights the commonly accepted misunderstanding that dyslexia is not specific. Teaching to this misconception is like teaching that the earth is the center of the universe. Much like the responsible sailors, who before the discovery that the world was round would not venture into uncharted territory for fear of risking their vessels, many good teachers are missing out on the scientific discovery that can open new worlds. Dyslexia is actually specific and identifiable. Further, using a more general term like “specific learning disability” hinders teachers and parents from finding the scientific literature on dyslexia, as these more general terms are rarely used in published research articles.
Identification of children with dyslexia can guide instruction to be most effective for them. A correct and scientific definition of dyslexia is critical if teachers and parents are to make decisions about reading instruction and intervention for students with dyslexia. Dyslexia is neurobiological, highly heritable (genetic), present at birth, identifiable as early as age 5, and very well researched through neuroscience.4
Copernicus and his telescope opened up a new world. Likewise, neuroscience and brain imaging can inform teachers and parents in the best course of reading instruction for struggling readers, opening their world to all the other information in the curriculum needed in the 21st century. Fortunately, reading is the subject of much neuroscience research. Empirical evidence, studies that are peer-reviewed and that directly test specific instruction methods are guideposts for educators. Scientifically, the validity of research is an important question to assess before investing time and money into programs that are not proven effective for the specific target group.5
If you were in need of treatment for your child’s infection, would you want to try the latest untested herbal remedy that the internet and celebrity gurus are talking about, or the experimental expensive new drug that has been tested in a small group of adult males on one college campus in one specific city? Or would you want the FDA-approved antibiotic that is known to safely and effectively treat that specific infection in children with a 30 year successful track record?
Neuroscience and educational researchers have provided clear indications of what the content for dyslexic students looks like, as well as the method of instruction that suits the dyslexic learner. Finding the right content and the methods that will work for all students requires that teachers and parents understand not only what to teach but the sequence and method needed specifically to build the pathways and brain activity of each step in the reading process. Building these pathways adapts the human brain to the printed word in such a way that a person can read text automatically, fluently and with comprehension.
Though all learners need to build these pathways, research shows that dyslexic learners only develop these pathways using structured literacy, a prescribed sequence of the content, and the methods of explicit multi-sensory instruction provided with frequency and with ample opportunities to practice each step to mastery before advancing to the next process. Decoding Dyslexia (DDMA) is working to have the scientifically based definition of dyslexia accepted in Massachusetts. Learn more about the goals of dyslexia legislation.
DDMA references the experts from the IDA (International Dyslexia Association) and NICHD (National Institute of Child Health and Human Development) who have issued the scientific definition below:
Definition of Dyslexia
International Dyslexia Association (2002) http://eida.org/definition-of-dyslexia/
1A simple google search with bring up neuroscience and reading research from Shaywitz, Gabrieli, Gaab,, Galaburda, Norton, Pugh, Wolf, Peterson, Pennington, Hoef, Cutting, Eden, Lyytinen, Perfetti, Deheane, and Sherman. I am certainly missing many names.
²Ken Pugh of Haskins Labs describes this process of various brain cells in specific areas of the brain; when we are born, the cells are ready to see and hear and recall without any instruction. He explains that they adapt through learning to build the pathways that allow our brains to read.
3http://www.doe.mass.edu/sped/cspd/sld_notes.pdf slide 6 Slide 6 shows an inaccurate and vague definition of dyslexia, while also having a scientifically referenced definition of aphasia (another SLD).
4http://cercor.oxfordjournals.org/content/early/2015/01/09/cercor.bhu305.abstract Norton, E. S., & Wolf, M. (2012). Rapid automatized naming (RAN) and reading fluency: Implications for understanding and treatment of reading disabilities. Annual Review of Psychology, 63, 427-452.
http://ase.tufts.edu/crlr/documents/2012arop-rapidautomatizednaming.pdf ; Norton, E. S., Beach, S. D., & Gabrieli, J. D. E. (2015). Neurobiology of dyslexia. Current Opinion in Neurobiology, 30, 73-78. https://www.researchgate.net/publication/266398209_Neurobiology_of_dyslexiaread.
5Long term studies of statistically diverse populations across a wide array of districts or types of schools give us a more valid indication than study in one school or district. Studies that are peer reviewed and hold up to scientific standards and scrutiny before being published are the most accurate and desirable to guide teachers and parents on the types of programs and interventions that dyslexic learners need to succeed. Not all research fits these standards.
“There are times as a parent when you realize that your job is not to be the parent you always imagined you’d be, the parent you always wished you had. Your job is to be the parent your child needs, given the particulars of his or her own life and nature.”
Written by Nancy Duggan
As the mother of three adult children, I know that almost any parent can look back and identify the times they wished they had figured things out sooner. If the “particulars” of your child’s needs include dyslexia, as they did for my youngest, recognizing what your child needs and how to be that parent is a unique challenge. You may wish you had more training for the job. Somehow you are trying to manage social, emotional, and academic issues that appear typical to others, yet the typical solutions and guidance seem to add to the problem. You need a compass and a good map.
My journey started 20 years ago. I knew my daughter was bright and motivated, but was behind her peers academically and not reaching the milestones her siblings had easily met. When I inquired about the path I should take, every teacher warned me not to compare, to give her time. After all, “she is a delightful child.” So I sat tight—I didn’t want to be that over bearing parent who caused teachers stress. When it finally became apparent to her teachers that needing a little more time was not the issue for my daughter, she had become understandably stressed. One of the oldest in her class, she was clearly intelligent, but I had an 8 year old facing fourth grade with literacy skills below kindergarten level. This was despite 2 years of preschool and 4 years of primary school—and yes, I read to my child, thank you very much! Finally, somebody said “dyslexia.”
One word turned the typical childhood path of academia into unchartered territory, and there was much to learn about the new and unfamiliar terrain for this journey. My dad used to say, “when all else fails, follow the directions.” I found myself learning about dyslexia, Orton-Gillingham, resilience, and child development. My research exposed me to some fascinating insights into how children succeed academically and socially and, not wanting to waste any more precious time, I became an informed consumer. Once I had familiarized myself with the terrain of parenting a child with dyslexia and knew the destination for which we were headed, I discovered my child was the compass to direct our path. I was forging the trail, but would go in circles without reading the compass.
With this in mind, I share a few travel tips for the journey of raising children with dyslexia:
Download and share with you school!_
Decoding Dyslexia Co Founder, Lisa Nelson interviewed by Mary Jo Kurtz of the publication Baystateparent in a great article, A Loss for Words: Many Young Readers Slowed by Dyslexia October issue p. 38. We hope you will read it and share the information.
On September 7th During the Exceptional Women segment of the Magic 106.7 Sunday morning programing Sue Tabb learned more about Decoding Dyslexia MA. She interviewed Nancy Duggan one of the founders of the group.
Decoding Dyslexia was glad to get this opportunity to raise awareness about dyslexia, and honored to have a member featured on the program. Additional thanks to all our co-founders and hard working members on teams for legislative action, dyslexia awareness, local out reach and networking! Thanks to all for contributing to our growth and success, lets keep going!
Smith on Dyslexia: We Can Turn Disability into PossibilitySEP 18, 2014
Washington, D.C. - The Committee on Science, Space, and Technology today held a hearing to examine the latest scientific research on dyslexia, the most common reading disability affecting one out of every five people. The hearing reviewed promising future research directions and treatments for people with dyslexia to overcome challenges they face, and explored educational opportunities for students with dyslexia in fields of science, technology, engineering, and mathematics (STEM).
Chairman Lamar Smith (R-Texas): “People with dyslexia think in a way that others do not. But typically in our school systems today there is not recognition, early detection, or enough teachers who are trained to spot symptoms of dyslexia early enough to get the students the intervention they need. That is why we have recently seen grass roots groups, like Decoding Dyslexia, form nationwide, and more specialized schools started to fill the gap. Unfortunately, not everyone has access to these types of schools and the learning strategies they instill in their students to help them become successful. For most people, dyslexia is a disability. But if we change the way we approach it, we can turn disability into possibility and give millions of individuals a brighter and more productive future.”
Dyslexia is a developmental reading disorder characterized by difficulty with learning to read fluently and with accurate comprehension despite normal or above-average intelligence. The exact causes of dyslexia are not completely understood, but brain imaging studies show differences in the structure and function of the brains of people with dyslexia.
Witnesses today provided impassioned testimony about personal experiences with dyslexia and how they have helped others overcome this challenge through innovative and creative problem-solving. While dyslexia is considered a learning disability, many talented people—especially in science, engineering, and the creative arts—have been diagnosed with dyslexia, including Albert Einstein, Thomas Edison, and John Chambers, CEO of Cisco Systems.
The National Science Foundation, an agency under the Science Committee’s jurisdiction, funds studies on dyslexia, and particularly, how dyslexic individuals view the universe differently due to visual-spatial skills. The lead astronomer and director of the Hubble Space Telescope Science Institute has dyslexia. The National Institute of Health also studies the neuroscience of dyslexia, as well as funding studies on how dyslexic students can best learn.
Witnesses today emphasized that despite common misunderstandings, dyslexia is not due to either a lack of intelligence or desire to learn, and with appropriate teaching methods, people with dyslexia can learn successfully. They also praised progress that has been made in the science behind dyslexia, saying that we don’t have a knowledge gap but gap in action. In other words, our current understanding of dyslexia is not fully utilized in either policy or practice.
Over 80 members of Congress have joined the bipartisan Congressional Dyslexia Caucus, co-chaired by Reps. Bill Cassidy and Julia Brownley. The caucus helps educate the public about dyslexia and advocates for policies that support those individuals who have dyslexia.
The following witnesses testified today:
Hon. Bill Cassidy (R-La.), Member, U.S. House of Representatives
Hon. Julia Brownley (D-Calif.), Member, U.S. House of Representatives
Dr. Sally Shaywitz, Director of the Yale Center for Dyslexia and Creativity
Ms. Stacy Antie, parent and advocate of a child with dyslexia from Louisiana Key Academy
Mr. Max Brooks, author and screenwriter who has dyslexia
Dr. Peter Eden, Ph.D., President of Landmark College
Dr. Guinevere Eden, Director of the Center for the Study of Learning
For more information about today’s hearing, including witness testimony and the archived webcast, visit the Science, Space, and Technology Committee website.