Finding the Right Advocate for Your Family
The content of this post comes from an episode of the Together in Literacy podcast where I was interviewed about my journey to advocacy and how Right to Read Advocacy empowers families who are supporting dyslexic learners. Listen to the full interview here: Supporting Families Through Advocacy with Jennifer Bernheim!
As the mom of a dyslexic learner, I know how hard it can be to navigate the special education process in a public school district. Back in 2020, when we began virtual schooling, I spent my mornings in Zoom classes with Evan, my now 4th grader, and I recognized that he was struggling in both reading and writing. I remember a time when it took my son 30 minutes to write one sentence and I could not figure out why.
Luckily for us, my mother-in-law is a retired reading specialist and she would Zoom with us daily to provide him with direct instruction. Yet, still, things weren’t sticking. We were doing everything we could to try to help him learn to read but nothing seemed to be working. Having two older children and having seen how they learned to read without these same struggles, I knew something wasn’t right.
We decided to ask our school district to evaluate him. They completed the evaluation and referenced his reading deficits. Despite intervention, he still failed to progress.
Our story continues with outside evaluations and enrolling Evan in a specialized school for dyslexic learners. Along the way, I realized that this process should not be so difficult and I wanted to help other parents who are on the same journey. This realization led me to pivot from my 20-year career in PR to become a non-attorney special education advocate.
What is an advocate?
A non-attorney special education advocate supports parents who are seeking better outcomes as they navigate the special education system. Advocates work collaboratively with the parents and the school district to help meet the individualized needs of a child.
Advocates offer support for families when parents before, during, and after IEP meetings. They:
Review a child’s records including recent evaluations, IEPs, and progress reports, and then provide a list of action recommendations
Attend IEP meetings with parents or coach parents prior to IEP meetings,
Help parents draft parent input statements, meeting agendas, and post-IEP communications, and
Advise on available community and professional resources.
Signs you might need an advocate:
You have concerns that your child has a disability, yet the school refuses to evaluate.
Your child is not progressing with their current IEP goals.
You feel frustrated, alone, and unsure of the next steps to take.
You are unsure of how to navigate the process.
Are You Considering an Advocate?
1. Ask your community:
If you are brand new to this world and in search of an advocate, an easy place to start is in your community. As with any other type of service provider, you want to make sure that your advocate fits your needs and that you will work well together. Ask other parents in your community who they've used as an advocate and ask them to share their positive and/or negative experiences.
2. Contact Professional Organizations:
You can also reach out to organizations to help you find an advocate. Most states have a Parent Advocacy Center where you can start to gather information. While Decoding Dyslexia and the International Dyslexia Association (IDA) don’t provide advocates, they do offer communities where you would be able to seek referrals and ask questions of their members. If you are a member of the Council of Parent Attorneys and Advocates (COPAA), you can search their member directory for an advocate in a specific state or area.
What Will an Advocate Cost?
Working with an advocate will require an investment and it will be worth it. Knowing what that investment will be upfront is important. A reputable advocate will be transparent about pricing.
Have a conversation with your potential advocate about how and when they bill. It’s not uncommon for advocates to charge hourly, but you should ask if they have a flat fee option. Also, make sure you are clear on what classifies as billable hours.
For more information about working with an advocate, listen to the Together in Literacy podcast: Supporting Families Through Advocacy with Jennifer Bernheim!
Additional Resources
For Assessments:
Books and Courses to Learn More:
Overcoming Dyslexia by Sally Shaywitz M.D.
Overcoming Dyslexia - Course
Wrightslaw: From Emotions to Advocacy by Pamela Wright and Peter Wright
Wrightslaw: All About Tests and Assessments by Melissa Lee Farrall, Pamela Wright, and Peter Wright
Fish in a Tree by Lynda Mullaly Hunt
Finding My Superpower: A book for dyslexic thinkers by Sarah Prestidge