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Decoding Dyslexia

A Voice for Dyslexia

Date Posted:  Friday, April 4, 2014

Submitted by Deborah Lynam

One of the first things a parent discovers as we begin the journey to learn about dyslexia and to find resources for our children is that there are two distinct worlds. The first is that of the learning disability (LD) community — dyslexia conferences, LD workshops, webinars, and research-based discussions. We read the books, the research papers, and the educational reports. We begin to understand the brain-based science that shows proper intervention can re-wire a struggling reader's brain to more effectively activate its language centers. This is the world that brings us hope and offers our children solutions.

Unfortunately, often times our children are educated in a very different world, that of public schools. It is here where we encounter many roadblocks and have to maneuver around many obstacles. Often times we have to work with intervention teams that do not understand dyslexia and therefore leave our children to languish in inappropriate interventions for years before referrals to special education were made.

It is time for public schools in the US to catch up with the current research. Good things are happening across the country in private schools and intervention clinics focused on students with learning disabilities. Research based interventions are in use, and educators are knowledgeable about what strategies work and what techniques are effective. Yet it is so sad that in spite of this research, children have to spend six hours of each day in a classroom that is not in tune to their needs. This is wasted time. This is precious time lost.

In the state of NJ, like-minded parents connected to form Decoding Dyslexia - NJ (DDNJ), a grassroots movement driven by families of dyslexic children. The mission is to raise dyslexia awareness, empower families with information and resources to support their children, and inform policy-makers about dyslexia, and the need to identify, remediate, and support students with dyslexia in New Jersey’s public school system.

This mission is one that has clearly resonated with parents across the country… the movement is growing at an astounding pace. At the beginning of the new year just a few states had parent led DD Movements. However, things have expanded and now 20 states are active!

Decoding Dyslexia members are connecting and collaborating with professionals, therapists, teachers, and policy-makers in their states. We aim to change the way things are done in schools by encouraging families to share their stories. Individual stories, when shared in unison, have power and Decoding Dyslexia is encouraging families to find their voices.

The time is ripe for families across the country to speak up about dyslexia. There is currently a bi-partisan Congressional Dyslexia Caucus in place in Washington DC. Congress will be looking to reauthorize the Elementary and Secondary Education Act (ESEA) and the Individuals with Disabilities Education Act (IDEA) in the near future and states are adapting to the new Common Core Content Standards. We need to ensure that discussions on improving literacy programs for dyslexics are included on all fronts. As parents we need to insist that this gap between research and practice is addressed!

deborah lynam headshot

Deborah Lynam is a parent and member of Decoding Dyslexia – NJ

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Tags:  brain-based science Common Core Content Standards Congressional Dyslexia Caucus Decoding Dyslexia dyslexia dyslexia awareness Elementary and Secondary Education Act empower families ESEA IDEA Individuals with Disabilities Education Act intervention language center literacy policy makers public education remediate

Making Time to Create Change

Blog Type:  Learning Disabilities Date Posted:  Tuesday, October 6, 2015

By Nicole Mitsakis

"You have to do the right thing...You may never know what results come from your action. But if you do nothing, there will be no result." Mohandas K. Gandhi

The quote above explains the very personal and passionate commitment I have to establishing Decoding Dyslexia in Massachusetts (DD-MA) as a relevant and effective means to improve the school experience of students with dyslexia. The struggle for my own child’s positive outcome in a public school was a work in progress, full of frustration and stress. DD-MA is a constructive outlet that allowed me to take some action.

or me, one of the most relevant opportunities was on June 17, 2015, when I testified before the Massachusetts Education Committee to share why dyslexia legislation is so necessary (HB 463 and SB 312). DD-MA has worked with neuroscientists and legislators to initiate legislation that will guide public school policy makers to better outcomes. What I’ve learned about the legislation process is invaluable, but the most important lesson I have learned is that by taking steps and creating the opportunity for others to join in those steps towards change, Massachusetts is closer to a result that would benefit all public school students struggling with dyslexia. As a new parent in the Landmark community, I’d like to share the mission of Decoding Dyslexia MA.  

Who is DD-MA and what do they do?

Decoding Dyslexia Massachusetts  (DD-MA) is a grassroots movement to raise awareness of the research-based interventions that are effective in overcoming dyslexia and opening the doors to academic success. We aim to influence families, educators, and legislators and our motto is: Make time to create change or the time for change will never be now.  

Together, committed parents and professionals have joined us over the few short years since our beginning in 2013. I am grateful to all the parents, professionals, legislators, and dyslexia experts that I have had the privilege of meeting and learning from on this journey. The process of advocating for any child with a disability is difficult and it’s even more challenging when that disability is often not acknowledged or supported appropriately.  DD-MA allows me to direct my energy in a positive way to create better outcomes. Below is a list of a few highlights accomplished by our group:

  • Meeting with neuroscience researchers at the McGovern Institute of Brain Researchers to promote dyslexia awareness
  • Advocating as part of the National Decoding Dyslexia Network in Washington D.C.
  • Dyslexia awareness lectures with Dr. Nadine Gaab, Dr. Elizabeth Norton, Dr. Stephanie Gottwald, Dr. Matthew Schneps, Dr. Roberto Olivardia and other experts
  • Documentary movie showings (both The Big Picture: Rethinking Dyslexia and Dislecksia the Movie) with panel discussions for Dyslexia awareness
  • Providing our 1700+ followers with an active place to learn about and discuss dyslexia
  • Engaging Massachusetts families in legislative or community action that will improve outcomes for students with dyslexia

There is still work to be done!

massachusetts dyslexia advocates

The current legislation includes two bills as drafts in the Joint Committee on Education, HB 463 and SB 312. At the Hearing, DD-MA families were accompanied at the hearing by experts like Dr. John Gabrieli and Elizabeth Norton of the McGovern Institute of Brain Research at MIT, Dr. Charles Haynes of MGH Institute of Health Professionals, and Dr. Roberto Olivardia, Harvard Medical School. Many members of the International Dyslexia Association also signed a joint letter submitted as testimony. Though the hearing is past, testimony can be submitted by anyone who wants to offer their opinion and story to the Joint Committee on Education. I encourage all families who are experiencing the challenges that come with dyslexia—academic, financial, social, and emotional - to contact legislators to support legislation.

Can you make time to create change?

For more information or to get or stay involved: Decoding Dyslexia MA wesbite DD-MA on Facebook

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Nicole Mitsakis, Landmark Parent and DD-MA Co-Founder & Director of Operations

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Tags:  Decoding Dyslexia dyslexia dyslexia awareness dyslexia legislation Gabrieli Lab in the McGovern Institute for Brain Research at MIT Landmark School making change National Dyslexia Awareness Month Nicole Mitsakis

Pending Dyslexia Legislation in Massachusetts

Blog Type:  Learning Disabilities Date Posted:  Monday, March 5, 2018 Byline:  By Nancy Duggan, MA. S.C.

women in courtroom

Decoding Dyslexia Massachusetts (DD-MA) began a campaign in 2012 to raise dyslexia awareness across the state through collaboration with parents, educators, and neuroscience researchers. The effort has made steady progress in building dyslexia awareness in the parent, educator, and policy-maker communities.

Since 2013, dyslexia legislation in Massachusetts has come further along than ever before.

Initiating Legislative Action

One of DD-MA’s goals goals has been to initiate legislative changes that would help students get early services by providing the scientific context for dyslexia and the need for early identification. The legislative process in Massachusetts includes a two-year session. We have worked together to navigate the process. Public Dyslexia Hill Days, private meetings, and multiple public hearings have provided legislators with:

  • an understanding of the challenges that families face,
  • the need for educators and students to get support,
  • the relevant neuroscience research that supports our mission.

Dyslexia legislation has come further along the path than ever before. The 2016–2018 legislative session started with four proposed bills, H.330, H.2872, S.294, and S.313, that can be called “dyslexia legislation” pertaining to education. These bills were supported, in combination, by over 50 different members of the Massachusetts 190th General Court, the official title of the State Legislature. Special thanks goes out to the initial sponsors who drafted this legislation, Rep. Alice Peisch of Wellesley and Rep. Chris Walsh of Framingham, chair and vice-chair, respectively, of the Joint Committee on Education; Sen. Bruce Tarr and Sen. Barbara L’Italien; and the legislators who petitioned alongside them. The vibrant team of DD-MA students, parents, educators, and neuroscience researchers are responsible for calling attention to this issue as a passionate, respectful, and informed team of advocates for improved outcomes, and these legislators are working together to take action.

The Legislative Process

The legislative process in Massachusetts requires a hearing, which took place on July 11, 2017.  Families joined a powerful team of experts who explained to the legislators in live testimony and with written testimony the need for dyslexia legislation, particularly the importance of early screening and identification, a clear and accurate understanding in schools of what dyslexia is, and that evidenced-based instruction, teacher training and professional development are needed. DD-MA worked with families across the state and multi-disciplinary experts to ensure that the testimony was scientifically sound, broad-based, including social-emotional outcomes, academic outcomes, and teacher, educator, and administrator support.

Whats Next?

DD-MA is very pleased that the Joint Committee on Education has released legislation favorably that addresses dyslexia and early screening. Both the House and the Senate will consider the same version in each chamber. When the new draft language is public, it will be posted on the Massachusetts State Legislature website. Once the redrafted bills, with new numbers, are made public, the clerk will also post which committee will be next to consider the legislation. For the time being, parents, students, and educators can continue to advocate for dyslexia awareness and the need for the legislation to pass by building a positive and informed relationship with your State Representative, State Senator, and their legislative staff.  Share with them your personal story and express interest in the outcome of dyslexia legislation.

Follow DD-MA on Facebook: https://www.facebook.com/DecodingDyslexiaMA/

Nancy Duggan is the Executive Director of Decoding Dyslexia Massachusetts.

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