Dena Hook and Lauren Shillinger

In their first article as Everyday Experts, Dena Hook and Lauren Shillinger spoke to Take On Epilepsy about why Individualized Education Programs (IEPs) are so important for special needs families and offered strategies to help parents build successful IEPs for their children. Well, we’re lucky to have them back again to discuss IEP maintenance: why it’s critical to regularly update your child’s IEP so that it remains useful and relevant, and how to resolve disputes if and when they do arise.


Why is it important to maintain an effective IEP? 

Dena: An IEP is a legally binding federal document that outlines a school’s responsibility in providing a Free Appropriate Public Education—or FAPE—to a child with special needs. Your school’s faculty and administrators rely on an IEP to guide and instruct them on how to provide support services for your child.


Lauren: As a parent, the thing I’ve realized about having a child with a complex medical condition is that her needs are always evolving, always changing. Which means we need to evolve her IEP accordingly. Let me give you an example: we recently went to Cincinnati for my daughter, Brynleigh’s, yearly evaluation with her medical team, and as a result we came home with a new list of their recommendations. So now it’s up to us to go to Brynleigh’s teachers and say “given these new recommendations, do the old programs still apply or do we need to change them?” In our case, it meant we needed to request a new IEP meeting, review the recommendations with the team, and come up with an updated plan.


"[The thing about] having a child with a complex medical condition is that her needs are always evolving, always changing. Which means we need to evolve her IEP accordingly."


And I would add that it’s not just about planning a successful IEP up front and evolving it as needed—even though that is critical—it’s also being aware that issues are going to come up. Even in a perfect school, as you continue on your child’s educational journey, little hiccups are going to arise. And while you don’t necessarily want to go in assuming it will be a battle, it’s good to be prepared to deal with issues if and when they do surface.


Do schools ever initiate IEP updates or is that solely the parents’ responsibility?

Lauren: For Brynleigh, her current IEP, which we planned last April, was supposed to follow her though until this coming spring, which is when a standard review would have been scheduled. But given the new medical recommendations we received, we had to call for a meeting sooner than that. As parents, you have the right to call an IEP meeting at any time. That said, you don’t necessarily have to call a meeting if you just have a few general questions. In those cases, it might make mores sense to request a more informal meeting. But if you feel you need to change you child’s therapy plan, or the frequency of a particular service, you need a meeting. And that means that anyone who provides a service to your child has to be in attendance. For Brynleigh, that means her speech therapist, her OT therapist, her PT therapist, her music therapist, a school administrator, her teacher, my husband and I, sometimes the school nurse, and maybe even the school’s principle or vice principle. Which means it can be a large, somewhat daunting meeting to call. But you shouldn’t let that discourage you. Remember, you want all those people there because you want a team approach and you want everyone to be on board.


Once an IEP is in place, what are the most common challenges that arise?

Dena: The challenge I see most frequently is families not getting follow-through on the goals and support services outlined in their child’s IEP. Many times, general education teachers don’t even look at the IEP or understand what accommodations they are required to provide to special needs students in their general education classroom. 


How are disputes between parents and the school system generally resolved?

Lauren: My experiences as a parent might be different from Dena’s, but I’ve found that there are really 5 potential stages of dispute resolution. Your very first basic option is to try and have an informal, sometimes one-on-one discussion to see if you can resolve the disagreement with the teacher or therapist on your own. I’d call that phase 1. Sometimes this is all it takes, but a lot of times the person will say to you: “You know, this is way beyond us going back and forth. We need to call an IEP meeting.” So I’d say that would be step 2: the IEP meeting. Then the next level of escalation would be to file for due process, at which point you’d be given the option to go through mediation. If mediation doesn’t work, or isn’t chosen, then you’d have a due process hearing. And the final, absolute worst-case scenario step would be to hire a lawyer and file a lawsuit.



STEP 1 Informal meeting
STEP 2 IEP meeting
STEP 3 Mediation
STEP 4 Due process hearing
STEP 5 Lawsuit


I’d also add that some people opt to get an educational advocate—these people are private advocates, unaffiliated with the school system, whom you can pay to come into your school and, because they know the system and the language and the process, can help you advocate on your child’s behalf. I’ll be honest: the schools don’t love it. They’d prefer you wait until you have a pretty extreme issue before you bring an advocate into the mix. And actually, that’s why I like Dena so much: because she’s a more unbiased resource. So I’d say that, before hiring an advocate, see if your county offers a family support coordinator like Dena.


What is mediation?

Dena: Simply put, mediation is an attempt to help two parties in a disagreement hear one another out and come up with a mutually agreed upon outcome. In the case of IEP disputes, the Individuals with Disability Education Act states that all schools are required to offer mediation to parents when disputes arise and/or when due process is filed. Schools must give parents the opportunity to resolve disputes through mediation before moving forward with a due process complaint. That said, mediation is always an option for parents if and when IEP disagreements arise. You do not need to file due process in order to request mediation.


Who is involved in mediation?

Dena: When parents request mediation, the State Department of Education is required to provide a list of certified, independent mediators who have no connection to the school district. Once a mediator is selected, the school district then schedules a mediation meeting in a neutral location. The district representative is required to attend, along with any school personnel needed to answer questions. Parents can bring anyone they choose for support and to share relevant information about their child. That said, attorneys (on either side) should never be part of this process.


What happens during a mediation meeting?

Dena: There are two kinds of mediation meetings. The first uses a caucus, which means that one general meeting is held where both sides have an opportunity to outline the issues, and then the parties separate and the mediator moves back and forth between the two groups. The second type of mediation requires the two parties to stay in the same room and have the mediation face to face. I am a certified mediator myself and have been involved in both types of mediation. Personally, I find the face-to-face method to be the most successful. A mediator’s role is to help the two parties come up with an agreement that both sides can live with, and face-to-face interactions generally get everyone collaborating and working together again more effectively.


"A mediator’s role is to help the two parties come up with an agreement that both sides can live with, and face-to-face interactions generally get everyone collaborating and working together again more effectively."


What is due process?

Dena: Filing due process is every parent’s right under IDEA in cases where FAPE is not being provided, and a due process hearing runs very much like a standard court hearing. Due process is a good option for parents who have tried every other option but still do not feel that their child’s needs are being met.


Who is involved in a due process hearing?

Dena: Once due process has been filed, the State Department of Education appoints an independent due process Hearing Officer. The school district will have legal counsel involved, and while parents are not legally required to have an attorney present, I always recommend that they hire legal counsel.  


What happens during a due process hearing? 

Dena: It really is a lot like a court hearing. Generally, the Hearing Officer will hear testimony from both sides, look at the evidence presented, and then file a ruling. And once he or she does so, that ruling is binding…unfortunately, there’s always a loser in a due process hearing.  


Given your experience, can you share any examples of situations that required either mediation or a due process hearing?

Dena: Sure! I’ll give you a couple examples of times when mediation was successful. Example one: I was advising parents who were requesting speech therapy for their child and had documentation from the school’s own evaluation that the child needed speech therapy. The school did not feel it had to provide speech therapy because their speech therapist was already at maximum capacity. The parents agreed to mediation after filing due process. The Resolution? The Mediator walked the school system through its responsibilities under IDEA and, seeing that it was legally responsible for providing FAPE, the school agreed to contract with a local hospital to provide speech therapy to the child. As a result, the due process was dropped.

Here’s another example: A student had been spending most of his day in the hall due to behavioral issues. The parents felt their child was being targeted by the teacher and wanted a different teacher. The school refused, claiming that parents cannot dictate what teacher their child gets. During this particular mediation, the parents were informed that they are not able to dictate teachers under IDEA; however, during the mediation, it was revealed that the student and the teacher were actually not a good fit. The resolution? Both parties agreed that the teacher would need to go through training on the child’s disability, and that the principle—not the teacher—would be the one responsible for disciplining the student from there on out.

Now for due process. Once I advised a set of parents who filed due process because the school removed their daughter from the resource room and put her in a regular classroom with no support.  This was done over the phone and the parents were told it was an administrative decision and that they had no say in the matter. As a result, their daughter’s grades were dropping and she was refusing to go to school. After a due process hearing, the school was found in noncompliance with IDEA and it was decided that any time there is a change in their child’s placement or her continuum of services, the change must be approved by an IEP team that includes the child’s parents.

Another set of parents I advised filed a due process because their school district refused to follow the Behavior Intervention Plan in their child’s IEP. Their child was also expelled for 15 days for inappropriate behavior without a manifestation determination. As a result of the due process hearing, the school district was found in noncompliance of the discipline policy in IDEA. They were required to have a manifestation determination after the child missed 10 school days. They were also found in noncompliance for not following the Behavior Intervention Plan in the IEP.


What resources are available to learn more about how to resolve issues with an IEP? 

Dena: The Office of Special Education Programs: .

I’d also encourage parents to contact the Parent Training and Information Center in their state, which is there to help parents understanding their rights under IDEA. To find your state’s PTI, you can visit: .

Lauren: I’d also add , which is a great resource for learning about special education law and advocacy for children with special needs.


Do you have any additional advice for parents who are facing IEP-related challenges?

Lauren: I don’t want to repeat anything I said in our first article, but I really do think it’s about being your child’s best advocate and an expert on his or her needs. Then to learn the law, know your rights, and be confident on what it is you believe your child needs. I’d also suggest asking the advice of those around you, whether it be other special needs parents, or someone like Dena. I’ve taken Brynleigh’s IEP and asked other parents to take a look at it: are we missing anything? Is this too much or too little? Because other people are great at both giving you a different perspective, and also reminding you what battles are worth picking and what services are worth fighting for. I also always encourage parents to get involved with online parent support groups, whether it’s a blog, or Facebook, or Instagram. I get so much support and help from these groups. It’s also a great way to find out about different webinars, conferences, and support groups. A lot of time these resources are IEP related, which means they give you a whole other set of people to lean on. It really does take a village, and building and then relying on that village is one of the best things you can do for your child.

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