by Joanne De Simon
The first time I sat on the parents’ side of the table to create an individualized education program, my son was four months old. He had just been diagnosed with a rare, life-limiting brain malformation. I’d been to many IEP meetings as a special education teacher. I understood the law, my child’s rights, and special education language. What I hadn’t realized until my son was diagnosed was how little I’d understood the parent perspective.
As a teacher, I didn’t understand the emotional impact of having a child with disabilities. My master’s degree didn’t prepare me for the endless medical decisions I’d have to make or the fights I’d face with insurance companies to cover the cost of life-saving treatments. I didn’t think parenthood would include battles with my school district over where my child belonged because our local school was unable to educate him. Years of teaching didn’t give me the tools to deal with strangers who stared at my son in his wheelchair and offered their apologies for his existence.
From the parents’ side of the table, I learned that the special education system is stacked against parents. Families do not have the same amount of money or staffing as districts to defend their children. While parents have certain due process rights and protections when there are disagreements, they rarely win. In fact, in NJ, districts win most cases; less than 20% of parents won a case against their district in 2024. https://nj.gov/education/legal/specialed/2024decisions.shtml
Even with all the rights that IDEA provides, parents are often fighting a losing battle, so it’s essential to approach IEP meetings determined to solve conflicts at the table. It’s an incredible weight for families to carry.
From the provider’s side of the table, I realized that parents are not privy to a provider’s workload or the barriers that come from a district’s directives. Often, a teacher’s voice goes unheard. I also realized that school teams work at a disadvantage if they only get to view a student from the narrow scope of what’s in a report and what behavior is evident within the walls of the classroom. For example, reading that my autistic son has an older brother with a brain malformation does nothing to explain how his brother’s epilepsy affects his mental health or ability to complete school work at home. It does not explain how our complicated family dynamics may interfere with his ability to access his education at school. I found it helpful to remind myself that no matter how long I work in the field or my personal experiences, I cannot know the whole picture. There are some things families don’t divulge.
In my role as a special education parent advocate, parents often call me because they are struggling to get their school district to say, “Yes.” Yes, to an initial evaluation. Yes, to additional supports. Yes, to changing their child’s placement. Yes, to filling any of the existing gaps in their child’s IEP. The truth is, most of the time, there is no quick and easy way to resolve IEP conflicts, but there are strategies to reduce conflicts and give parents, teachers, and administrators a positive blueprint for working cooperatively.
I find it’s helpful to view education as a business that requires relationship building. Parents and educators should approach these relationships as an ongoing responsibility. It’s more than interacting at an IEP table once a year. Fostering a collaborative relationship allows team members to build trust and improve communication. The goal is to have students reach the end of their educational entitlement, ready for further education, employment, and independent living. Acknowledging this as a mutual goal will help avoid an Us vs Them mentality.
To be an effective advocate on either side of the table, it’s important to understand special education law. In addition to resources from school, teams can look to reliable, disability-dedicated groups and organizations to learn more about rights, responsibilities, special education law, and school policies. District leaders who do not know the law or the nuances of the state special education code may unknowingly break the law. Occasionally, local policies, procedures, and practices violate the law or deviate from state and federal regulations. Even STATE law can violate IDEA. Did you know, for instance, that in 2004, the State of Texas capped special education classifications at 8.5%(the national average is nearly double that)? It took 14 years and a series of articles in the Houston Chronicle before advocates pushed the U.S. Department of Education to take action. Such a move violates the law, but hundreds of thousands of students with disabilities were denied services.
Documentation is vital. Communicate as much as possible with team members in writing. If you have an essential conversation, follow it up with an email detailing the discussion. Memory is a funny, unreliable thing. Record events as they happen so you can have an accurate educational history to refer to in times of conflict. Keep notes about who you spoke to, what was resolved, and what the next steps might be.
An essential tool for maintaining positive relationships is recognizing that every team member has a unique expertise and an equal seat at the table. Working with the belief that everyone has the goal of supporting student success in school and beyond drives the focus towards facts and data that define and justify specific student needs. If your child is struggling with communication, lean into the expertise of the speech language professional on your CST. If your child is not making progress in reading, ask for input from the LDTC. And if behaviors are getting in the way of learning, ask a BCBA or school psychologist to weigh in. It can be helpful to request specific formal and informal evaluations. When current educational strategies are failing, it is not an opinion. A lack of progress over time is a quantifiable fact, which leads to the following strategy: data collection.
Special education, by its nature, lends itself to data collection. In fact, decisions are supposed to be “data-driven’ meaning they are based on measuring what is happening and making changes based on those measures. As part of the IEP process, parents and districts should be very clear on the outcomes they expect and describe how they will measure those outcomes. Whether it is an increase in math fluency or a decrease in tantrums during art class, there is a way to measure, and record what is happening in an objective way. Data can be used to document the need to make changes to lesson plans, modify behavior plans, add related services, extend the school year, and even change placement.
Of course, there are no guarantees in the world of special education advocacy, even if you believe you have the correct data to justify a particular need. Whether you’re the parent or the teacher, you might still find yourself in a place of opposition. Sometimes the answer is “no” because “no” has always been the answer. As an advocate, I respect others’ expertise, but I don’t rely on it. If I truly don’t understand why the answer is “no,” I channel that confusion into curiosity, ask questions, and search for reliable answers from district personnel and outside sources I trust.
Three years ago, my autistic son and I were looking at non-degree, inclusive college programs. Sebastian wanted a college experience and to transition from being a high school varsity runner to being a D3 collegiate athlete. Time after time, colleges told us that Sebastian could not run for them because NCAA rules would not allow a non-degree-seeking student to compete. I believed these schools thought the answer was “no,” but I still felt this was a reasonable ask that should be given serious reconsideration.
Using what I’d learned from both sides of the table, I studied the D3 rules and contacted experts in NCAA eligibility. I discovered there were existing NCAA waivers that might allow students like Sebastian to compete. After finding a college that aligned with Sebastian’s academic/vocational aspirations, we found the person with the most sympathetic ear within the program who was willing to partner with us in order to effect a change. I also created a list of other departments and administrators within the university who might be able to support our efforts. I call this a hierarchy of help. Together with my research and the contacts within the university, we turned a “no” into a “yes.”
Not only did my son receive a waiver to compete, but the NCAA also issued a legislative change ensuring the right for any athletically capable student with an intellectual disability to compete in a D3 inclusive program. It didn’t happen overnight. I fostered a relationship, remained persistent, trusted that we had the same goal, treated my collaborator with respect, and provided the facts needed to justify this consideration so their job of advocating on Sebastian’s behalf was as easy as possible.
Communication, respect, research, and persistence are the keys to collaborative relationships and turning a “no” into a “yes.”
About the author: Joanne De Simone holds degrees in dance and special education from Hunter College. After dancing professionally, she dedicated her life to teaching children with disabilities and supporting families. The mother of two adult sons with developmental disabilities, Joanne, is a special education advocate for the Alliance of Private Special Education Schools of North Jersey. In addition to her recently published book Fall and Recovery: Raising Children with Disabilities through Lesson Learned in Dance, her writing has appeared in the Washington Post, Exceptional Parent Magazine, and the Rumpus, among other publications. Joanne has been featured in the Philadelphia Inquirer, on HuffPo Live, CNN, and GMA3. Visit https://special-educationmom.com/ for more information.
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