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The Ups and Downs of IEPs:

Navigating the Process – Ep. 22

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Dr. Kimberly Bell: [00:00:00] Have you ever had that feeling in your gut that something’s wrong but you can’t quite figure out what it is. For young children that happens all the time. They feel the same big emotions as grownups: anger fear frustration; but they don’t have the tools or experience to manage them. So they tell us how they’re feeling through the way they behave. In other words children are always communicating. We just need to figure out what it is they’re trying to say. Welcome to The Hidden Language of Children, a podcast devoted to helping grownups decode the meaning behind children’s behavior. I’m your host Dr Kimberly Bell Chief of Clinical Practice Training and Innovation at the Hanna Perkins Center for Child Development in Shaker Heights Ohio. At Hanna Perkins we understand a child’s behavior as communication and we work with adults to understand it too, so they can enjoy parenting more while helping their children grow into resilient caring and confident people. I’m here again with our producer [00:01:00] Bob Rosenbaum. Hi Bob.

Bob Rosenbaum: Hello Kim. So our episode today is about IEPs: individualized education programs. When we started planning for this episode, I was surprised to learn how common IEPs really are: About one in every seven school kids in the United States has one. That’s like 3 or or 4 kids in every classroom. For families who live in the world of IEPs IEPs, they can take over daily life. There’s meetings, there’s setting goals, there’s wondering and worrying if the IEP is being followed, and and of course, how’s the progress going?

What a lot of parents don’t fully grasp at first – and this surprised me too – is that an IEP isn’t just a plan. It’s a legal document. It’s backed by federal law, the Individuals with Disabilities Education Act or IDEA.

Understanding what your child is really entitled [00:02:00] to, making sure the school delivers it, and sustaining that effort year after year with every new teacher in every new grade at every challenge or setback, it’s hard work and parents need to find their own way through it.

So we’re talking about that journey today. Let’s start, Kim, at the beginning. I’ve already mentioned the IEP is a legal document backed by a federal law. Tell us what’s the basic purpose of the law?

Dr. Kimberly Bell: OK. Well it it does a few things. This was started back when we were trying to create equity and access to educational systems. And so schools cannot just kick a kid out or expel a child who isn’t adequately adapting to their learning plan, right, to a standard educational program. And so what the IDEA law really does is it protects people from being excluded from educational [00:03:00] opportunities. And so all public schools are required to provide individualized instruction that takes into account any of the special needs that a child might have due to learning disabilities or ADHD or anxiety or developmental delay or speech difficulties. And it offers also government funding, by the way, to the schools to provide things like occupational therapy, speech therapy, tutoring…. It provides a great deal of what we call accommodations for a child.

Now, before we start going into depth onto IEPs I do want to talk a little bit real quickly about what a 504 is. A 504 is an alternative to the IEP. It’s a less complicated process; it’s less involved; there’s not the same financial investment from the state. And so if someone has just a [00:04:00] diagnosis and they really just need some considerations in the classroom you can provide these accommodations without this very intense IEP evaluation process. It only requires that you have a diagnosis from a psychologist or a pediatrician.

Bob Rosenbaum: So how does an IEP come about? Who’s in charge of making sure it happens?

How long does it take from the outset until there’s an IEP in place?

Dr. Kimberly Bell: So technically it usually takes about 60 days from start to finish. They should get the process started within 30 days of the request and so it really depends on where the request comes from. If you are a parent and you keep seeing that your child is not keeping up and you’re concerned you can request that an IEP evaluation be done. The [00:05:00] school can come to you and say, “We would like to do an evaluation.” So it can come from multiple places. The teacher could bring it up. And then what happens is all of the professionals involved in an individual education plan will do an assessment. The school psychologist will measure achievement, uh looking for any kind of learning disabilities, reading comprehension any of those sorts of things. A speech therapist, even if you don’t consider that there’s going to be a speech issue, a speech therapist has to do an evaluation. You have to get a hearing and vision test done. The occupational therapist will do an evaluation. So all of these special services will do an evaluation and they will say, “Nope don’t need anything from me” or, “Yes, they need services from my department,” and then they will create goals and objectives very specifically. A lot of people think of it as just classroom [00:06:00] management but it really is beyond that. It’s about assessing the entirety of the child’s school functioning and then coming up with which services need to be slotted into place to help that child maximize their educational potential.

Bob Rosenbaum: Is the evaluation always comprehensive or is it sometimes focused?

Dr. Kimberly Bell: Yeah Bob actually it is always comprehensive. All of those people come together and they produce a report which is called an ETR, and it shows you that they have assessed all the different aspects of your child’s educational experience; and from that the IEP, the Individualized Education Plan, is written based off the recommendations. You might also hear people talk about it as a Multifactored Evaluation. So everybody weighs in and then they make a plan.

Bob Rosenbaum: I’m thinking about the parents walking into their first meeting and [00:07:00] there’s a a principal maybe, there’s a um teacher, there’s a special ed teacher, school psychologist, a counselor…. That’s gotta be really overwhelming.

Dr. Kimberly Bell: It can be because it feels like depending on how your school manages it, it can feel like you are being called to the principal’s office. And these people are that have done all of these different evaluations are going to go around the table and report to the group what their findings were. And because they’re looking for a plan you’re going to hear maybe 10 percent strengths and 90 percent critique. That’s how it’s going to feel: “And here’s what’s wrong with your child, and here’s what’s wrong with your child, and here’s what they can’t do.” It isn’t meant to criticize your child. But the whole point of the meeting is to talk about the needs of your child so that an adequate plan can be put in place. Right? The intervention specialist needs to know what accommodations are [00:08:00] necessary. The OT needs to know do I pull this child out of class, and they’re going to miss some instruction time because what they’re going to be doing with me is important enough.

And so because of that they have to talk about all of these details and observations, and it can be emotionally really taxing on parents. And so I think you need to go in knowing that you’re going to hear a lot of negatives about your child’s performance and it can feel adversarial. But if you go in with the right mindset that nobody in that room knows your child as well as you do… You need to see yourself as an equal member of that team that also has observations, things to say and questions to ask.

Bob Rosenbaum: So everybody in that meeting has their own area of expertise.

Dr. Kimberly Bell: Yeah. Your expertise is sort of knowing your whole child [00:09:00] and it’s not always going to feel that way, right? Because you don’t know what’s going to work for your child in the classroom. But if you have a sense – if they’re saying you know, “Well we think that Johnny should be able to get up and go to the sensory room every two hours if that’s what he needs,” you may have some previous experience with that or you may not and you may kind of have to go, “Oh, OK. That’s what they can offer my child let’s see if that works.” So your input is how does your child feel about school? What is their self-esteem around school? Do they resist going to school because they are so not happy when they go there? Those are the things that you know in terms of what your child has said.

Bob Rosenbaum: And I would imagine you also can help them understand the things that work for your child, the things that your child responds well to.

Dr. Kimberly Bell: Yeah.

Bob Rosenbaum: And that’s part of your role as the parent to help them integrate that stuff into the plan.

Dr. Kimberly Bell: Yes. [00:10:00] And sometimes, so if your child’s already in therapy some parents will invite the therapist to the IEP and sometimes therapists will go out of their way to attend, but typically outside therapists are not invited. So oftentimes, if you do have a child who’s in an external therapy, you can ask that therapist for a treatment summary or a report or something to be shared with the IEP, if you want to, cause that’s considered protected health information right? That’s HIPAA stuff. Or you can be the voice of the therapist, if you’re working with your therapist closely which we all hope you are, then you can share what has worked in therapy; what they have not responded to in therapy. Those pieces from the outside come from you.

Bob Rosenbaum: OK. And I just want to step back a little bit. We started talking about the initial IEP meeting, but there will be many meetings over the years, and what we’re talking about here is applicable to any or all [00:11:00] of them, correct?

Dr. Kimberly Bell: It is and when you think about it, when when the IEP is requested, it’s not done at the very beginning. The IEP is requested because there have been concerns in the classroom maybe over the course of two to three years where they have tried less intensive intervention. So they they don’t rush to do an IEP because these are expensive. And so you’ve already gone through years of talking to teachers, parent-teacher conferences, Johnny won’t sit still, he’s disruptive in class. And they’ve already tried to just create some potential interventions without going through a formal process. So parents are often worn down by the time this very formal thing comes. Maybe they’ve been wanting an IEP and the school’s been pushing back; or maybe you’ve been hesitant because you don’t [00:12:00] want your child labeled as needing special education services. So it’s very rare that an IEP is the first thing people think about. There’s type one type two and type three essentially if you think about it this way: On type one or level one the teacher talks to you and says I’m going to try this in the classroom, and you just say “Yeah that sounds good.” And then the teacher says, “You know what, Johnny? When you start to get worked up, you and I are going to have a hand signal and I’m going to I’m just going to signal you that it you need to get yourself under control.” If that doesn’t work then the school psychologist or the intervention specialist can come in and say “OK level two: Maybe it’s a 504. OK, we can we can do some services without doing the whole evaluation because they do have this diagnosis of ADHD and we can put some things in place very quickly. That also has to fail. It’s response to intervention, right? So you try two [00:13:00] levels of intervention and then the IEP is this third level of intervention. So you could be, as a parent, very tired by the time you walk into this very formal appearing meeting. And it’s unusual before then to walk into a meeting that has a member of the school administration. But they have to because they’re part of the team. They’re not there just for your child. They’re there because there is a defined team that is written into the laws.

Bob Rosenbaum: So the environment that you walk into may come as a surprise. The fact that you’re going to talk about an IEP is not likely to be a surprise.

Dr. Kimberly Bell: No. If you’re not prepared it may be a surprise as to how many people are in that room. And you know, look, public schools are not wealthy, and so these meetings often take place in a small out-of-the-way classroom. You [00:14:00] may be sitting in grownup size chairs, or you may be sitting kid-sized chairs. It can be very disconcerting because now you’re sitting in a very small child’s seat in a classroom in an elementary school around a small table with 7 other people and they’re all here to talk about your child.

Bob Rosenbaum: So let’s jump to a situation that things don’t go well in that meeting. The parent starts to feel defensive or like their child is being attacked.

How do you prevent it from becoming an adversarial thing. I mean, you’re depending on these people to care about your child’s well-being.

Dr. Kimberly Bell: You know here’s the thing. If you look on social media you will see parents who post videos of themselves crying in their car after going to an IEP meeting. That was in fact an adversarial meeting. That experience was that their child is not getting the services that they need, and [00:15:00] they’re having a hard time advocating and feeling like they’re being heard. I think when that happens it’s most often when a child is having big behaviors. Aggressive, let’s not say big, let’s just be real. If your child has a learning disability and they need extra time on a test your IEP meeting isn’t going to be emotionally fraught. It’s going to be pretty straightforward. But when you have a child who’s on an IEP for something more emotional, or aggressive behavior, then you have a parent who feels guilty; a teacher who maybe has been hit. And sometimes the feeling that you get is they are looking for a way to kick my kid out of this school. And sometimes whether they’re conscious of it or not, maybe they are. Right? Because they may recommend as part of that IEP that your child go to a different classroom – Re-Ed is what we call it here in Ohio; re-education, which is sort of a separate [00:16:00] school that the school system pays for but it’s usually a private non-profit. And that is a classroom where all of the children have had too strong of behavioral difficulties to stay in a mainstreamed environment. And I think those are probably the hardest meetings to be in where there is a decision being made about whether or not your child can be sustained in a regular classroom.

Bob Rosenbaum: Yeah that’s fraught. I mean, first of all, there is a part of the law that says the child will be served in the least restrictive environment which, you know, the optimist in all of us would be that’s the classroom the child was first assigned to… and now all sudden, maybe your child can’t be in that classroom. And it would would also raise the question is the school more school worried about maintaining calm in the classroom or are they more worried about my child? [00:17:00] How do you reconcile that? And what are your rights as a parent if you just don’t believe the best?

Dr. Kimberly Bell: Well there are a few things you can actually do. Uh you have a right to request an outside evaluator. If you do not agree with the assessment that was done you can request an outside evaluation be done like that multifactored piece, and you can have those tests rerun.

Bob Rosenbaum: Can and you do that at any time, or does it take a specific issue to come up?

Dr. Kimberly Bell: I mean if you disagree with their findings then that’s enough. There are also lawyers that specialize in advocacy for these very issues. So you know it’s a problem when there’s a whole specialty around it, right? When there are lawyers that are out there specializing in special education advocacy. So what are some of the complaints I’ve heard over time, I think is maybe a part of part of what we can cover here, which is “my child has an [00:18:00] IEP but the teachers aren’t implementing the plan.”

Uh those are teachers who are typically very overwhelmed with number of students; number of students in their class on an IEP. Another complaint is that they’re trying to use the multi-factor evaluation to kick my kid out of the school uh and I I don’t agree with their assessment of my child. What do I do about that? And sometimes you have to get legal involved in that but sometimes if you can be a strong advocate and not give in to that sort of being the parent to blame sort of role and see yourself as an equal member of the team, then it could be a little bit more um effective to push back. But understand that sometimes if a school wants a child out of the classroom, they will push back pretty hard and then you can seek some outside help. That, by the way, just from my perspective, I hope that [00:19:00] if you have a child who’s struggling to the extent that they’re about to get to be kicked out of a classroom that you have a therapist outside of the school. If you don’t have one of those get one of those first, and then that therapist can also write an evaluation, a summary, make strong recommendations which will help you. So you’re not always advocating alone.

And I recommend, if you’re not a single parent, I recommend that both parents go. Oftentimes these things are delegated to one parent, and if you are having a meeting that is very contentious it is a very strong statement for both parents to come in. Both parents if they’re divorced, both parents if they’re married. And if you feel like you’re being emotionally torn up, you are allowed to bring anybody with you. Bring your best friend. Bring your mom. You can bring an advocate with you and there is no rule about who that advocate needs to be. So [00:20:00] you can bring a step-parent, you can bring someone you’re dating. It doesn’t matter; You’re allowed to bring somebody to that meeting and sometimes that’s all it takes to help keep you regulated.

Bob Rosenbaum: There’s layers to this. There’s first of all, what is the child’s disability or what is the issue that is creating the need for an for an IEP. Then there’s the child’s own emotional state through it because they’re certainly aware that they’re getting some special treatment.

And then there is the parents’ emotional role in all of this. And then of course parents’ role as an advocate, which is a technical, time-consuming hard job.

Dr. Kimberly Bell: Yeah. You know one of the reasons why we are so set – I was about to say strict but I don’t think we’re necessarily strict; we are enthusiastic – about parents [00:21:00] being so involved in the work that we do with children here is because it is easy for parents to get into a pattern of taking their child to a doctor and saying, you’re the expert; I now turn my child over to you and I await your assessment of me, my family, my child and you’re going to tell us what to do.” The reason we approach it as a team is because we know that going forward, whether people are leaving our school or leaving our clinic after a time, they have to be the most knowledgeable person about their child, what’s going on with their child, what happened, what needs to be done to be helpful. So if you’re involved in your child’s therapeutic work and you’re doing your parenting meetings and you’re doing all of those things you should be able to walk into even a contentious conflicted IEP meeting feeling very well-grounded in the difficulties that your child is having, and you’ve [00:22:00] worked through your guilt and so that you are a little more impervious to some of the things that you know may be said or talked about in a in a meeting like that.

Bob Rosenbaum: I think by its nature, our conversation on this topic is focusing on the hard stuff. But at the same time, the IEP is intended to be a positive thing. It’s intended to be individualized. It’s intended to be caring. It’s intended to generate progress and help that child succeed.

Dr. Kimberly Bell: It is.

Bob Rosenbaum: So how often – I know you don’t have a statistic on this – what’s your guess? How often does it go right? How often does it go less right?

Dr. Kimberly Bell: Well I think most of the time they go well. The vast majority of the time they go well. And and again it it depends. Behavioral issues are going to be more fraught and difficult meeting-wise, and sometimes [00:23:00] autism can be difficult. And the reason why is that some of our kids that are on the autistic spectrum are maybe struggling socially maybe struggling here or there but if their academic performance is meeting standards then they will not qualify for an IEP. And so sometimes the difficulty for families who have a child with autism is that they don’t get an IEP and they want one. Because that’s one of the other complaints that I hear the most is: “But my child needs an IEP. Because my child is sitting in the back of the classroom and staring out the window and doing nothing is completely withdrawn.” But they’re getting A’s on their spelling test, and so that is not considered a reason to have an IEP. Keep in mind the IEP is meant to create a series of services that allows your child to maximize their academic potential. [00:24:00] Not have more friends. Not be more participative in class. If they’re getting the grades and they’re learning the work then your child won’t be eligible for an IEP.

Bob Rosenbaum: At which point that might be time to look for a therapist if you don’t already have one with your child.

Dr. Kimberly Bell: Oh, for sure. That would be a great time to look for a therapist. And you know it’s also OK – again, like I said, there’s these level one level two or type one type two interventions and if you and the teacher have concerns about that you can go to the school psychologist or the counselor. Like there are certain things you can do without the IEP. I just think sometimes when people hear IEP they think, Oh if my kid’s going to get any services this is what he needs. But there are two other levels of potential. The only thing is level one is the teacher tries something in the classroom and that one is not protected by law. There’s nothing that says if the morning [00:25:00] ed teacher decides to implement this in the classroom the afternoon ed teacher also must implement it. That requires either a 504 or an IEP. So if you’d get turned down for an IEP because your child’s testing doesn’t support it, always ask for a 504 if you feel like there are things that need to be in place.

Bob Rosenbaum: So Kim, I understand Hanna Perkins is opening an assessment center sometime in the summer of 2026. How does that play into all of this?

Dr. Kimberly Bell: We are starting the assessment center to do testing for autism and ADHD. And the reason we’re starting there is because currently in Northeast Ohio there is anywhere from 6- to 12-month waiting lists at various hospitals and agencies that do diagnostic testing for autism. So the waiting lists are massive. And we [00:26:00] have the capability of doing those kinds of assessments here and so we’re looking to help fill that service gap.

So what can these assessments be used for? Our autism diagnostic assessment in particular will render a diagnosis obviously if they have autism right. If they meet criteria and the assessment determines that they have autism, that diagnosis is enough to apply for the autism scholarships that are available through the state of Ohio. Um the diagnosis if you you know are going to be moving out of the state of Ohio the diagnosis holds. Once you have a medical diagnosis of autism you can apply for whatever it is your state has available if you move. It could at times depending on the content be something you can take with you to request a 504 plan, to request a full IEP evaluation, and they may accept the [00:27:00] autism testing that we do as part of that multifactorial evaluation. They may have want to have their people do it but you can present that as evidence when you go in and request special services. So that is one of the reasons to get an assessment and get tested.

For ADHD it also helps with a 504 and you can use the ADHD diagnoses to go in and help. And when we do our evaluations they’re going to be a little bit different maybe than a medical diagnosis based on the way that we think about kids. Really using them so that when we write a report families and also teachers potentially will be able to understand not just what the diagnosis is, but in this particular child how might that show up in their behavior, in their daily functioning, in their relationships ,in the way they manage and handle their emotions. So hopefully we can offer some pretty specific suggestions also about potential [00:28:00] interventions.

Bob Rosenbaum: And how can people contact the Assessment Center?

Dr. Kimberly Bell: Sure. They can contact the assessment center through our main number – (216) 991-4472 – and when the front desk person answers just say I would like to be put on the list for autism or ADHD assessment. Super simple.

Bob Rosenbaum: OK, great.

So before we, before we get to our our exit, I want to mention a couple of things.

One: The IEP is codified under federal law. It’s administered at the state level so there may be some variations in the way it’s administered from one state to another. What we’ve talked about here today is how Ohio applies the law. So we just want to make sure our listeners know that.

The second thing is we have prepared a document that will be available at the Hidden Language of Children website that outlines what the law says in simple language. It also provides the exact language of [00:29:00] the law which is legalistic and not very readable, but we can make it easily accessible for you. And also covers a lot of the key acronyms and the jargon that are used in IEP conversations.

Bob Rosenbaum: So if that kind of a resource is useful to you, you can download that from episode 22 of The Hidden Language of Children podcast at our website at hannaperkins.org.

So with that said Kim you want to take us out.

Dr. Kimberly Bell: Sure. I just want to remind everybody if you have any questions about parenting or child development or anything we talked about today we are happy to answer them. All you have to do is send a question by email to hiddenlanguageofchildren@gmail.com I want to thank everybody for joining us again today. We hope that you enjoyed this conversation and found something to take away from it. The Hidden Language of Children podcast is a production of the nonprofit Hanna Perkins Center for Child Development in beautiful Shaker Heights, Ohio. Our producer is Bob [00:30:00] Rosenbaum who was with me today and Dan Ratner is our consulting producer. If you like this podcast, please subscribe to hear future episodes and share it with all of your friends and all of your family. We welcome your comments and your questions. Again hiddenlanguageofchildren@gmail.com. I am Dr Kimberly Bell and we look forward to seeing you next time.