Issue 25: Literacy Moms NC - Accidental Advocates | Amanda Harrison & Ginny Sharpless

Literacy Moms NC – the beginning

Like many parents before me, my family’s story followed a well-worn path. A path that was unexpectedly long, traumatic, exhausting - and expensive. My own personal journey began after realizing our 7-year-old son may be dyslexic. I naively expected his school to be as invested in finding answers as I was.

When I realized my struggling reader may be dyslexic, I asked his team for help. After months of resistance, it slowly began to dawn on me that our situation was dire – the school did not want to investigate and refused to consider my son may be a child with a disability. They refused to evaluate him, and in desperation, I looked for resources in my local area to assist us but couldn’t find any support. Eventually I connected with some parents via social media. It was alarming to hear similar stories despite our children attending different schools in various different districts. Our children were struggling with reading; many of us suspected dyslexia, but our concerns were being dismissed. As the months progressed, I began to realize the pushback was systemic, hearing similar examples repeated across the state. Without exception, parents were being told we didn’t ‘read enough’ to our children, or that our kids just needed to find their ‘love’ of reading. We now know this is a very common, unproductive and harmful response that shifts accountability from the school and onto the parent.

I didn’t know how to navigate this system, but I understood our collective voices may hold power. We made a conscious decision to attend local school board meetings to raise awareness about dyslexia, reading instruction and the impact of illiteracy. Our numbers slowly began to grow, and in the summer of 2019, a group travelled to Washington DC, to meet our state representatives and connect with other parent advocates. We held meetings with our state Exceptional Children’s Division at the state Department of Education (NCDPI) to better understand their supervisory role in the implementation of special education law. However, it was obvious our polite ‘reactionary’ advocacy was not working - we were not being taken seriously. We understood direct action would be needed to influence systemic change. It was time to get proactive!

I didn’t know how to navigate this system, but I understood our collective voices may hold power.

Direct Action – Parent Power

In the early part of 2020, we decided on a strategic plan to ‘interview’ each candidate running for the position of State Superintendent of Public Instruction. This role is an elected position with responsibility for overseeing the day-to-day operations of the public school system in North Carolina. We knew it was important to establish and publicize the vision of each candidate, specifically in terms of reading instruction. Once we understood each candidate’s principal goals, we ensured parents could make informed voting choices by sharing their manifesto across social media platforms. After a particularly tough forum, one of the candidates remarked, “Wow! Those literacy moms are really tough!” Hence our name. Ultimately, a new Superintendent of Public Instruction was elected whose vision supported a change in reading instruction that was aligned with the Science of Reading. She also advocated for change in legislation relating to educator personal development training and educator prep programs.

Power Imbalance

Under federal special education law, the complaint resolution process is one of the few free mechanisms available to parents for resolving conflicts and disputes. The integrity of this process relies on appropriate oversight and effective supervision by the State Educational Agency, which is tasked with investigating complaints of non-compliance. We recognized the process was flawed, lacking impartiality or transparency and was without consistent remedy for individual children. Often, parents reported vastly different outcomes that were seemingly dependent on income, race, or geographical location. There was little accountability in the process – not surprising when states are permitted to investigate themselves. When the system for correcting issues of non-compliance fails, parents are forced to file due process - a legal petition that is very costly, time intensive and not accessible for most families.

We implemented a strategic plan to highlight inadequacies in the resolution process and launched a ‘State Complaint Campaign.’ We filed over 40 complaints, which ultimately triggered monitoring at the federal level. Our campaign resulted in systemic statewide corrective action, mandatory training in all districts, as well as changes to legislation and policy.

Other work

• We knew it was important to help guide parents in filing their own complaints. We are committed to providing accurate, correct information so parents can access the special education process. Informed parents are empowered parents.
• We successfully campaigned to amend the minimum admission requirement in the public university system across the state. Previously, students were required to complete 2 years of a foreign language prior to being eligible for admission. We know that foreign language acquisition is particularly hard for students with language-based learning disabilities. This policy unfairly impacted students with dyslexia, forcing them to seek higher education in private institutions or outside of their home state which has huge financial implications. In April 2021, the Board of Governors of the University of North Carolina system voted to amend their policy making alternative credits an option for any student with a documented disability.
• We successfully worked in partnership with other organizations to remove the ‘race-based comparison of children’ in the state special education eligibility process for children with Specific Learning Differences.
• We partnered with local attorneys who agreed to work on full contingency for families in financial need.
• In partnership with Nessy Learning, we were able to donate over 400 reading and spelling licences to schools, community groups and families.
• We created informational videos for parents on various subjects related to dyslexia and the eligibility process.

On-going projects

We are currently working on several projects. A couple of examples are:

• A lengthy complaint filed with the Office of Civil Rights specific to read aloud accommodations for students with dyslexia. This complaint is actively under investigation.
• We are engaged in partnership with multiple organizations to create more ‘parent friendly’ resolution documentation.

Looking ahead

We would like to see a future where leaders within the education system are truly committed to ensuring dyslexic children are identified as early as possible. Early intervention optimizes a child’s potential and, with appropriate early services, may even reduce the need for special education. Educators must have the knowledge and sufficient expertise to recognize a struggling reader versus a dyslexic student, a vital skill that is currently missing.

Inaction is a ‘slow death’ for our children - without proactive, intentional, urgent action children become the collateral damage in a ‘wait to fail’ model hiding in plain sight.

Lessons Learned

Parents - trust your intuition! We cannot emphasize this enough. I have yet to meet a parent whose suspicions about dyslexia were not confirmed. Do not wait; seek help early, and find your tribe - the fight is hard – don’t do it alone.

Our call to action would be an education system that is truly committed to ensuring children are being identified as early as possible. Early intervention optimizes a child's potential and, with appropriate early services, may even reduce the need for special education. Without proactive intentional action, children become collateral damage in the 'wait to fail' model, hiding in plain sight.

Amanda Harrison & Ginny Sharpless

Extracts from Dystinct Magazine