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Hey, everybody, welcome to Undivided Live. I'm Lindsay Crain, and I head the Content and Community teams here at Undivided. Thanks for being here today where we'll be talking about what to do when it's just not working at school. How can we use the IEP process to truly understand what our kids need and how to make sure those needs are met? If a school says something isn't working, is the focus on problem solving? Or is your child being blamed for the lack of progress? Are you hearing suggestions to cut back on services? Maybe even a change in placement?
Yes, services and placement are valid parts of any IEP discussion, but if something isn't working, the team's job is to figure out why, what's getting in the way, what needs to change. Sometimes we're told everything's going great, but other parts of our child's experience tell a different story. So how do we get to the root of what's really happening? What questions should we be asking? Because at the end of the day, an IEP is about ensuring our child has what they need to succeed in school. Unfortunately, it doesn't always live up to its purpose, so let's talk about how to make it work. So here to do that with us today is non-attorney education advocate for Undivided and Carey Advocacy, Lisa Carey.
Lisa has advocated for thousands of families with IEPs, including her own. She's also the mother of three sons with disabilities. Welcome back, Lisa.
-- Hi. Excited to be here.
We have lots to talk about with Lisa on what to do when the IEP isn't working and how to create a plan that does. Okay, Lisa. So I think most people listening realize that IEP accommodations are not optional for a team to implement, yet we hear way too often that they aren't happening, or students are asked by teachers do they really need their accommodations, which is not okay, and not all kids can come home and tell their parents that they're not getting what they need, and many kids who can, don't. So what are some big red flags that accommodations aren't being implemented or aren't working, and how can we know if we're not in the room?
Yeah, that's a great question. So... sorry, excuse me. You started by saying that accommodations are not optional. They're not. You're correct. However, accommodations are also not something that you want the school to implement every single day, every single one. They’re as needed. So, what do I mean? Let's just say your child has an accommodation of extra breaks, right? And they're taking a... they're doing an assignment. They're working, they're focused, they're doing what they're supposed to do. You don't want someone to come up and be like, “Hey, stop working. You need to take a break now.” So... right?
Accommodations, they are not optional, but they're also as needed. And so, how do you know if they're working? It's gonna really depend on the type of accommodation, obviously, that we're talking about. Some of the common things we might notice is obviously your child can tell you. If your child can't tell you, like so many of our kids, you might notice an increase in behaviors when they come home from school or in the morning when they're getting ready to go to school. They don't want to go. Work samples, right? So, for example, if your child has an accommodation to be using a device to type and the work’s coming home handwritten still, it... excuse me. Then, another way, too, is to ask the teacher very polite, in an informational gathering kind of way, very politely ask the teacher some open ended questions, right?
So, for example, you could say, “Oh, I noticed that he brought home this test. Can you share with me what accommodations seemed to work well for him during this test?” Right? Assuming the positive, instead of saying, “Are you using his accommodations?” because your answer is going to be a yes or a no. Probably a yes. So I would ask more open ended, like “Which accommodations seem to be most helpful for this type of assignment?” Those types of questions. It's a great idea. And what can we do as parents when accommodations aren't being implemented, and we confirm that they aren't, then what can we do, Lisa? The obvious answer, right, is to have an IEP meeting, but it is possible too that... It is possible too.... They just don't... I don't want to say this, right?
Because they should know, but maybe they don't know, right? So it is... You can ask, “Have you...” I'm so sorry, you guys, I lost my train of thought. Try asking the teacher, “How come you're not allowing extra time on the test? Was it not working well? Is there another thing you're doing instead?” Try to get some information. If it turns out that they're just simply too busy to be bothered, then you're going to have to ask for an IEP meeting. Rght. And what are the biggest... I mean, same question, but about modifications. What are the biggest issues that you see with modifications that make them unsuccessful? Well, I think the biggest issue is the school’s not following through, or they don't specifically have somebody assigned to do it. It's one of those situations where the teacher thought this other person was doing it and the other person thought the teacher was doing it. I see that more often than you would think. So in the IEP meeting, when those modifications are being decided upon, it's a good idea to ask who's responsible, and get kind of specific information.
And I do... like I said, I think it's the follow through. The follow through seems to be what I see the most. And what are questions that parents can ask to determine if the modifications are appropriate, because again, they might be happening, but are they appropriate? Are they working? So for the modifications, and honestly the same for the accommodations, the starting point is going to be those assessments that you have, and those present levels on the years you might not have the assessments to see what the team is saying. Beyond that, you're going to want to make sure that the modifications are using themes or pictures that are going to be engaging to your child. If your child absolutely loves everything basketball, right, then... and they're working on writing a paragraph, then we should be asking them to write about basketball, right? Not always, but at least let's try to engage them and make it interesting.
Another thing is we want to make sure the modification’s age appropriate, okay? If you have a fifth grade child who's reading at a kindergarten level, the theme shouldn't be Winnie the Pooh. They're in fifth grade, right? Appropriate, but using those kindergarten level words, if that's the instructional level that they're reading at, right? Let’s see, what else? Find out if your child is bored. Again, it’s going to be some probing questions, watching behavior. If your child is bored, or alternatively if they're very frustrated, that might tell you that the accommodations are... or, excuse me, the modifications are too easy or too hard. Right. And I mean, just... yeah, I think everything that Lisa said, what is coming home? Look at the work samples. Look at the classwork. Is it appropriate? You can take your own data. You can look at those assignments, try them at home and see are they struggling, are they not, and hopefully then have conversations with the team and let them know what you're seeing at home as well.
Another thing about modifications or any kind of classwork, Lisa, a lot of times we see aides creating modified materials, so is that okay? Or how should it work? So an aide or a para... paraprofessional or an aide should be implementing what a teacher, a credentialed teacher, so typically a special education teacher, but it could be the general education teacher depending on the circumstance, has prepared. Now they can show the aide how to deliver the materials, right? But the teacher is the one who is structuring the assignment. Now, that being said, if the modification is something that is very simple, right?
And they tell the aide, “Hey, cut this and paste this, and print this,” that's okay too, because it needs to be under the direction of the teacher, but the aide should not be Googling how to modify it or something and doing it themselves. Right. And certainly not on the spot. And whether that's a classroom aide or a 1:1 aide, right, they should be taking direction from the teacher. -- Always. Aides are not teachers. Right. Yeah. Yeah, exactly. And another issue that really shows us that things might not be working like pullouts and isolation within a gen ed class can be a big issue with accommodations or modifications, so specifically around modifications, what can we do if our child in gen ed is pulled out or pulled to a corner to work on a different lesson or assignment than the rest of the class? So I think, in your question, there's two parts, right? One is if the child's working on something different, right? And the other is if they're pulled out or pulled aside.
So if they're pulled out, that's really going to depend on how the IEP is written. So if it's written the child should be pulled out in the IEP, then they're going to be pulled out. If it's pulled aside in the classroom where we're kind of almost siloing the child within the room, right, that could be appropriate if other kids are being siloed or moved out in small groups too. So sometimes, for example, in a lower elementary class, you might have a group of two or three students working on this with this adult over here, and so if everybody's doing that, I personally don't have an issue with it. But the third part of your question, right, is if they're doing something else, that is where I do have an issue, and this is not easy as I make it seem. It does take some training for the teachers to learn how to do it, but if everybody in the class is doing math, the child who is having modification should also be doing math. They shouldn't be watching a YouTube video or tracing their letters at that time, or working on writing their name or a sentence. They’re doing math. If the class is learning about a history lesson about World War II, the child should not be looking at their literature or their science. They should be doing their history too, and their history should also be World War II. They should be learning the same subject, but it should be modified to their level as per the IEP.
Right. And like you said, Lisa, sometimes that... maybe that... you might need some team training so the team feels comfortable on how they're teaching, how your child is included, and what that lesson is, and they might be working. Maybe their work looks a little different, but they are absolutely a part of that class and should not be learning something different. And there was... You froze for just a minute, Lisa, so just a little clarification when you were saying that people... that if everyone is getting pulled out or doing separate things, and by that, I just want to clarify, because I'm sure that's gen ed students too, right? Not that clusters of students with IEPs are being pulled out, but if it's that’s how the class is run, that maybe, like, “Hey, we're going to go do this fun thing somewhere else,” and all the groups are rotating, that's what you... I just wanted to clarify that statement. Yes, yes, that's what I meant. And in schools now there's a lot of group work and there's a lot of small group work where it's one or two or three students that are doing something, and then there's larger group work too, as they get older. And so I think that in the lower elementary, they want to start preparing kids for that, and it's also easier to teach. If you’ve got a bunch of seven year olds, they call it in preschool and kindergarten ‘centers,’ right? We've all heard of centers, right? As they get a little older, they don't necessarily call it that. They might call it your reading group or whatever, right?
I'm just saying is if your child is being included in general education and they are being pulled, but they're being... everybody else is being pulled too, both the kids with and without IEPs, then that is something to be careful of. I myself got upset when my child had been pulled with another student, only to find out that they were taking two students at a time, alphabetically out of the room for something and bringing them back, and it was the whole class alphabetically. So I just wanted to point that out. As long as your child isn't a center of one and they're the only center that’s in a corner, then... right? Right. Exactly. Yeah, yeah. And another huge issue. Teachers and parents sometimes struggle with how to understand how they can make a gen ed setting work for a student who's significantly behind grade level, and the result is that that student is often placed in a special education setting.
So how can we make it work, for example, if a child is developmentally at a second grade level and they're in eighth grade? How can we advocate to make them successful in that gen ed eighth grade classroom? Well, so there's lots of things that can be done. The biggest problem or barrier, I guess I should say, to this is support for the staff right now. A lot of times, one teacher in a room of 30 eighth graders isn't going to be able to differentiate instruction for anybody, right? So they need to have the support built into the classroom. That's obviously the first one. Then some of the other things. Reading is... literature is such, for me, the go-to because it's so easy to explain, but they have modified books, okay? So for example, the whole classroom, and it is... a lot of fifth grade classes read... Johnny Tremain is the book, right? There can be a modified book, which takes the same sort of key points of the story, right, and really simplifies it. So a chapter might be boiled down into a few sentences, and of course, they’ll include some pictures and stuff, and the benefit for this is when the class has a class discussion about the chapter that everyone was supposed to have just read, the child who has the lower reading level still knows what happened in the story, right?
They still know that -- I’m making this up here -- that the character went to the store and bought a dog. Whatever it is, right? So they're not feeling left out. They follow along. Alternatively too, is if their auditory is good, then they could do an audio book. Lots of them are free through the library. You can also even go on YouTube and oftentimes get audio books that just have a one static picture, whatever, for the whole story. It's not actually a video. Gosh, I could talk about this forever. But yeah. -- Lots of ways to make this work. Again, I will go back to team training. And so if people... If they don't know how to make it work, then that’s a discussion that you can have in the IEP, and I guess I just wanted to clarify that, Lisa. So there's so many things and there's so much research and there's so many strategies and tools to use to make inclusion successful, but all of these discussions and points can be included in the IEP, yes? Yeah. Absolutely. And you mentioned assessments a little earlier, and sometimes we know exactly what assessments our kids might need, like an OT evaluation, and other times we just know that things aren't working but we don't know how to fix it. So how do we know what assessments could help our kids? Yeah. So I don't think that... The parent is not the expert in assessments. You're the expert in your child, but you're not, unless you happen to be an OT or a speech therapist, right, you don't know what assessments your child needs, so what a parent can do is let the school know what your concern is, or your need, and you can say, “I am concerned with my child's ability to read. I'd like you to assess the reading,” right?
The school should... the expert at the school is who should choose what that assessment should be. You don't have to know the name of a specific assessment, and I actually discourage parents from asking for specific assessments by name, right? Like, we all heard of the Wechsler or the CTOPP or whatever. I actually don't want parents asking specifically and instead just giving their area of concern, right? But I would also say, and I know this puts something on the parent, but be familiar with, and I know... I think Brittany's sharing something in the chat, but different kinds of assessments, meaning if you don't know what an OT assessment covers, right, you can read about that, and there's when you get into even low incidence disabilities, there are some really specific assessments in there that maybe even the experts on your team don't know about, and not the specific name of an assessment, but things that are legally required, right? So, if you have concerns, ask your team. Like Lisa said, they should know. And if you're hearing from other parents or you're hearing about other things, ask them again and really have a discussion on what can benefit your child, because sometimes the experts are experts, and sometimes the experts might need a little help. And that doesn't necessarily have to be you, but just ask lots of questions within your team and outside of your team as well. And I do also... Oh sorry, go ahead, Lisa. Can I just elaborate on one thing I said, which is when I said I don't want you to ask for assessments, there's actually a reason for that, and that is you don't want to be in a situation where you asked and pushed for specific assessments, and they do those specific assessments, and then you're not happy with the results, and you say, “I want to get an IEE or something else.” IEE stands for independent education evaluation, which is an assessment done by somebody that doesn't work for the school, but that the school pays for. You don't want the school to say, “Well, I did the assessments that you demanded I do. I would have chosen something else. So we're going to do more assessments.”
So we want to let the school sort of have the first shot, and we want to let the expert use their expertise to figure out what the assessments are. I just wanted to clarify the why. Definitely. And a follow up on the IEE or it's the individualized educational evaluation, right? But can you just explain... I mean, you gave us that definition. Lisa, but how can parents utilize their rights for an IEE? Yeah. If an assessment is done for your child and you disagree with the assessment and that is literally the bar. You have to disagree, right? You don't have to have a specific disagreement. You just have to disagree. You can request the school district perform an individual education evaluation, IEE, which is where the district funds for an assessment by an outside assessor, and you usually want to request it in writing because we do everything we do is going to be in writing, right? And the school district either has two responses that they're allowed to take: fund or file. Fund meaning yes, here's how you go about doing it, and file is filed to prove that their assessment is appropriate. File due process. And if that happens, you as a parent can either say never mind or you can proceed to move forward to assert that you want an independent evaluation. Got it. And so just to sum up modifications, what are five tips to make them successful? Five tips. Okay, so first I would ask for work samples, and I think when you ask for work samples, it's a good idea to ask for... well, if your child is in a general education classroom, right, and their work’s being modified that... in that classroom, ask for the general education instructions for the same assignment, so you want to see what the general education... I keep saying general education students, but all of our students are general education students, so the kids without an IEP, right, see what their instructions for the assignment was, and then look at the work sample to kind of compare how it was modified. You want to make sure that the IEP itself lists who's responsible for the modification. I said that.
Again, we don't want to be in a situation where we think someone else is doing it and nobody does it. You want to look if the modification are too easy or too hard, so ask open ended questions. That's definitely an important one. And figure... find out whether the modifications are excluding them from their peers. That's a good question. And I think... -- No centers of one. Just remember that. No centers of one. No centers of one. I like that. That's actually a good way to think about it. And then of course, the modifications should be aligned with the goals in the IEP wherever possible. And as we've been discussing, obviously placement can be a huge sticking point, so what if a family is requesting a nonpublic school or an NPS? How can they advocate within their child's IEP? Well, to go to an NPS, which stands for nonpublic school, usually that happens when a school... there's like two ways I can phrase this, right? One is when a school can't handle your kid and isn't able to educate them, right? But the way we say that is, if their placement is ‘not appropriate.’ It's always that ‘appropriate’ is the word that we're looking at, right? And you want to take a look at... If you as the parent are advocating for a nonpublic school for your child, then what I suggest you do is get a piece of paper and a pen. This is for yourself, right? Or your iPhone or however you take notes and start jotting down what's not appropriate about school. And when I say school, I mean everything that happens from drop off to pick up. So it doesn't have to be just the physical school. It can be the academics, it can be speech, it can be peers, it can be safety, all of those things. And start making a list for yourself. Oh, sorry. Go ahead, Lisa. And I was going to say , how do you get an NPS? Well, once you've figured out why your school is not appropriate, simply start by asking for it in an IEP meeting. Sometimes the school might say yes. I've actually had that happen multiple times where we said, “This is not appropriate, and here's why, and we want to look at an NPS,” and the school said, “Okay.”
Or they're going to say, “Absolutely not. This is appropriate,” in which case you'll likely need an attorney. And do we need to request an assessment for a placement change? It depends. If you have just had your round of assessments, you just... you're in your triennial or you're in a continuation from your triennial, maybe not. It's just going to depend on the specifics of the case. If you're saying they can't manage your child's behavior and that's why you want to move to an NPS, but you've not had a functional behavior assessment, which is an FBA, then you're probably going to need to get an FBA first. Okay. And you mentioned safety concerns, and so I wanted to follow up on that. What if there is a safety concern or something that requires an immediate placement change? What can parents do? Yeah. Immediate placement change, I would... I would request an IEP meeting. Keep in mind there is no such thing as an emergency IEP. The regulations say that they have 30 days to hold an IEP meeting for when a parent requests it, and there's no way to change that regulation by saying it's an emergency. They still have 30 days. However, I would let them know that it's urgent in writing and that you have safety concerns. Include that in the writing. That might nudge them to move a little bit faster, because if you think about it, if something does happen to your child after you've told them you have safety concerns, there's a liability there, right? So I would just put it in writing that you would like to have a meeting as soon as possible because you have concerns about safety. You had also mentioned bullying. So can parents request that their child not be in a classroom with the child who's bullying them? Yeah, absolutely. If there is bullying and it's risen to the level of bullying, the action should be taken against the other child, not the victim, meaning the other child should stay where they're at unless there's something else going on, right, that it's not appropriate, but generally speaking, the bully is who we would want to move.
Yeah. And I only... I sort of made a face just because I know that so frequently that is not... sadly not the case, and that's not how it's done, and it's all about what our children should avoid or how they should act differently, or maybe they should go to a safe place during lunch or whenever it might be happening, and that actually leads me to another question. If there are times like passing period or lunch where a child is being targeted, can they request aide support or extra support during those specific times? Absolutely, absolutely. You can request from a school a safety plan, and part of that would include... and by the way, a safety plan is also something that kids without IEPs might have if there was a situation like this, so it isn't necessarily an IEP thing. That would include how the school intends to keep the child safe. And I just want to add really quickly that when I talk about keeping a child safe, I'm not just talking about physical, I'm also talking about emotional, and I'm also not talking about some of our kids, especially those with autism... I have two autistic kids myself, young men, when we're talking about... sometimes there isn't actually bullying going on, but the child is perceiving bullying, okay? And if a child is perceiving bullying, then they're being affected emotionally as though they're being bullied. I hope that makes sense because I just talked in a circle, but... so even if they're not being bullied, but their perception is that everybody is mean to them all the time, then they are living that trauma, whether it's real or not, right? So even if it's perceived, we need to think about that child's mental health. Does that make sense? -- Yeah. I mean, we want to work on helping that child perceive things more realistically and understand maybe the social cues that they're not understanding, sure, but we also want to protect their mental health. If their disability is making them feel unsafe and terrified and they're in fight or flight, so whether they really are in a fight or flight or they feel like it, either way we need to do something so they can feel safe and learn, which is why we're... one of the reasons that we're at school.
Yeah, it's sort of like if your husband or your roommate comes into the kitchen and you don't know they're in the house and they scare you and you scream, and then you turn around and it's your husband, your heart is still racing. You still dropped that dish on the floor. You still reacted from a terrified state, right? So you still had that reaction, even though you see, oh, it's just my husband. So I'm just saying is we want to assume that that child is kind of going through that trauma, even though we can see that it's actually not happening. Just brushing it off and saying, “No, no, no, he wasn't mean to you. You just misinterpreted,” doesn't make that trauma inside them stop. And I am not a therapist, so this is just what I've learned. Right. No, it's an amazing... it's a really good point, and something that is, I think, frequently overlooked Yeah. -- by teams. So another thing, we kind of talked about modifications. We’re starting to talk about inclusion. Parents often hear that an inclusive placement isn't working. So what are some common reasons that inclusion is not successful? The supports aren't in place. Usually when I see that inclusion is not working, it's a situation where they've just sort of taken the child and thrown him in the room and said, “All right, they're there,” and given them half an hour a week of a special ed teacher to do some modifications or something. So we have to make sure that the supports are in place. Inclusion doesn't work without the supports, and you have to get those supports in place, and that's a challenge for a lot of teams. Right. Right. Some other things I know that we've talked about, Lisa, too, that there... if there are no structured social opportunities, right? That's also a big part of school, and I want to touch on socialization in a minute, and like you're saying if there are supports but if aides, like we've kind of touched on too, if aide support isn't being implemented effectively, or if they're being pulled to the corner, things aren't being done right, everything that we've talked about, right, but what... I guess, what are some strategies if it isn't working that can improve support so the student can be successful?
I think that if it's not working for whatever reason, right, I think the first step is trying to figure out why, and that is so hard, right? I'm not... I understand that some of you listening might be like, “Oh right, so she just says that.” I know it's really hard, and earlier we talked about how to tell if modifications are working, this is going to be sort of the same sort of thing. Start always with open ended questions, okay? Don't say, “Is it working?” Right? Say, “What is a particularly difficult time of day and what's happening during that time?” Right? That kind of question can get you so much information that will help you start to figure out what's actually going on in the classroom, and that's going to be the starting point. Right. -- Right. You can also do... There are... There is an assessment that is becoming more and more common. It's an ecological assessment, and what that is about is looking... having an expert come in that's usually an inclusion expert or an expert in inclusion. Some school districts actually contract or have hired this person for the whole district, and they look at the environment. They're not so much looking at the kid who we’re including, but they're more looking at the environment and the structure of the day and the structure of the class to see what changes might be done to make the environment more inclusive. Right. Yeah, I think, and I know Brittany, again, is sharing some links in the chat and you can read more about that. We just wrote that up because it's something that a lot of our kids need that, again, a lot of teams don't know about, and all the strategies that Lisa is talking about all through today, right, whether they're behavioral interventions, you can get peer mentoring, assistive tech, all these accommodations, modifications, there's so many tools that can be used, and I like how you said that, Lisa, that these assessments are really looking at the environment and not the student, because it isn't about how the student needs to change, it's how do we change that environment so a student can be successful.
What if our kids, Lisa, are not meeting their IEP goals in an inclusive setting? Is that a reason that a child can be removed from gen ed? So, the standard is we have to try all the things before we move a child from general education, so if the child's not meeting their goals, then we need to look first at, are the appropriate supports in place. Are the appropriate accommodations and modifications? Is the appropriate staffing there? Is there all of those things, right? Does a child need more speech? Does the child need more OT? Does the child need an aide? Does the child need an aide only for lunch time? Whatever we're going to look at. Once all of the things have been tried, in a perfect world, the next step would be to have them go to a special education environment for a part of their day, right? I wouldn't say necessarily, “Oh, this child can't do inclusion 100%, so now we're going to go 100% to a special education classroom.” I would say, “Well, let's just do math over in special ed and the rest of the day...” So try to find that balance where they can still be included as much as possible. And that does actually get a little bit easier in middle school, believe it or not, because everybody has a different math class, right? Or high school. Just in my example. Right. Although sometimes it does get a lot more difficult as kids get older too. Socially. -- Well, and to talk to your teams. I think a lot of teams have a harder time seeing how inclusion can work as kids get older and those gaps get wider, but the conversation is the same. It really is. And then, Lisa, so are your answers... Is that the same in any placement, if kids aren't meeting their IEP goals, what do we need to do? Are those answers the same? Yeah. Yeah. What’s missing? Why? I always want to know why, right? Was the goal too lofty? Well, if the goal was too lofty, why did we think a year ago or six months ago that it was appropriate?
What changed, right? Because everybody agreed that it was appropriate. Did the child change that drastically? I doubt it highly, though it is possible, right? Something... the kid could have gotten sick. Whatever. Something happened. But I would want to start with why and what's missing? What do we need to do differently? And too often our kids or their disabilities are blamed when things aren't working, and maybe we’re told that they're not capable of appropriate behavior or academics, progress, whatever it may be. It’s really wrong, so how can we respond, Lisa? We can't blame the kid for their disability and that is... that's so wrong that it's one of those things that I can feel I'm getting a little bit worked up, like what are you doing. And I think that if things are not working, the adults, right, need to look at what changes can be trialed. And by the way, when I talk about looking at changes, it doesn't mean that we're going to say necessarily, “Okay, we're going to do this new thing. I'll talk to you all in a year,” right? We can trial. We can say, “Let's try this new thing for two weeks,” and then meet maybe informally. Maybe it doesn’t have to be the whole team, but meet again and see did it work, did it not work, let's try this other thing, and try different things, but please stop blaming the kids for their disabilities, right? If your child has ADHD, we all know the child’s got impulsivity, okay? And we can't say, “Oh well, the child is too impulsive and keeps poking their peer with a pencil,” whatever it is, right? We need to restructure that environment so they're not able to poke the peer with the pencil, but they're still in the classroom and in the environment, right? So maybe all the desks need to be turned, angled, I don't know, but if they do it's the whole class, it’s still inclusive. That was my point.
Right. And everything we're talking about today is about solutions and strategies. It's not about punitive measures against our kids. And a lot of times things really do get turned around, so it's really important to level set. And another huge issue for our kids in any placement can be behavior, so what about a student's behavior plan, and despite the plan, which might include aide support, the student continues having behaviors. What can we do when the behavior plan doesn't seem to be working? Well, this is an area where we look at the data, is the strongest thing I can say. You want to look at the data. If the child has a behavior plan, then that means somebody is collecting data on what we call the target behaviors, right? And so the target behaviors are the identified behaviors that they have looked at and determined are impeding the child's academics and inability to access all of their education, right? So it could be inattention, right, and lack of focus. It could also be hitting or eloping. It could be self-stimulatory behaviors, which, again, I'm only talking about those that are getting in the way of learning, right? Self-stimulatory behaviors or stims aren't a bad thing in and of themselves, right? We're just talking about impeding learning, and so if it's in the behavior plan then there is somebody doing data collection, so let's look at that data collection and see what has changed. Maybe when the plan was written the behavior only happened at transitions, but now it's not even happening at transitions. It's now happening whenever, during math. I don't know. I pick on math a lot, because that's my area that I'm very not good with, but we want to look at the data and honestly, this is a place where in my brain, because I really try to be polite in IEP meetings, but in my brain, when they talk about all the reasons that the kid is not whatever, in my brain, I'm always saying, well, that's your opinion, where's the data? I want... That's subjective. I want objective data collection, and if there's a behavior plan that should be available. Right. And just back to that blaming question. If a school is constantly sending our child out of class if they're stimming or if they're moving around, how do we handle that? Yeah.
So, if the child... I'm sort of thinking through how to answer, because one of the reasons we hear that kids are sent out is they're disruptive. I don't know about you guys, but have you ever volunteered in a classroom? Classrooms are loud. They're busy. They're often chaos, at least in elementary school, right? Maybe in high school, we're looking a little bit better, but classrooms are not these... I love how people say, well, their kid needs to go into a more quiet room. The special day classes are usually louder, generally speaking, right? I’m very much generalizing, but if they're sending your child out occasionally, right, and it's an effective means to help with whatever the behavior is, I'm okay with that personally, because we're all humans, but if it's happening every single day for periods of time, then your child is not receiving what we call FAPE, a free, appropriate public education, because you can't educate your child if they're not in the classroom. So, my immediate reaction, if you were to say they're doing this to my kid is I would say, “Well, do we have an OT assessment? Has the OT been involved? Are we offering this child flexible seating like cushions to sit on? Are they able to stand in the back?” Right? If it's just a fidget need, can they go stand in the back? Can they sit on a beanbag in the corner, right? There's certainly nothing about school that says you have to be sitting in a 90 degree with your legs in a chair to learn, right? I can learn just as well on the beanbag. So sort of figure it out. Now, if it's something like vocal stims, right, where they're yelling out things or their behavior is something that is truly disruptive versus that someone just said it might be disruptive, right, but actually disruptive, right? Maybe you're rocking a table like this. I had a student do that. So then they're going to be wanting to look at the behavior plan and teaching them what we call a functionally equivalent replacement behavior, but basically we're going to teach them another way to get that out, whatever that is for them, right?
It might be from anxiety. It might be from boredom. I don't know. But we want to teach them something else that they can do that is less disruptive, if it's truly disruptive. So always looking why is this happening. How can we support? Where is the data to show that a change needs to be made? So another specific question about progress around related services. So if our child isn't making progress, maybe, for example, a child has received speech therapy for a few years and they can only say ten words, and the district says that they're going to discontinue speech services since the student isn't improving, what can parents do or say in response? So, speech is a good... it's ... speech is the easiest one for me to answer, right, because all of our children... It's a human right, communication. Every single one of our children needs to have a form of communication, and we need to work really, really hard to work with them to get that communication as much as possible. So if those speech goals have been around, I don't know, putting together two words or whatever, then maybe it's time to look at shifting those speech goals to using an assistive technology, like an AAC device or picture cards or something. So I would say write some new goals, write some goals to allow more of what we call multimodal communication. I know Undivided has done some videos with some amazing speech therapists who talk about AAC, so if this speaks to you people watching, go Google that or go on the website and find it. It's amazing information. I will admit as an advocate I have watched those multiple times. For things like OT, again, it's gonna depend what the service was for in the first place. So obviously if they want to fade out a service, we're going to always ask for an assessment. They can't say to you, “Oh, we're done. We're no longer doing it.” They need to do an assessment to show that it's no longer needed, and then from that assessment, you may agree or disagree and ask for an IEE like we spoke about a couple minutes ago. Right. And I think something that we hear a lot about is, well, services are supposed to fade out, so if we feel like our kids still have needs in those areas, they're just getting older, is it a thing, right? Can they just say, “Well, we're supposed to fade out services even if they're still in need”?
Okay, so, I hate to talk about disabilities in a severity level, right, because everybody is an individual, but yes, there are probably certain things that children have IEPs for where a service could fade out. For example, if a child has an IEP for dyslexia, they might be able to fade out the amount of support they're getting as they've... learning their reading skills, and they become better and they get to grade level if they can keep up, right? Absolutely. We know many professionals who have dyslexia that don't need a service as an adult. Then we have other students that are going to need levels of support for the rest of their life. Okay, so I have a 12 year old who has Down syndrome. He's going to need a level of support for the rest of his life. There's not going to be a fading out, but what will happen is for the kids that will need the ongoing support, which is most of our kids by the way, I just wanted to say there's a small group where maybe they could fade out, but for most of our kids, the service isn't going to fade out, but the need is going to change hopefully as they progress. So maybe your child has something with their muscles that makes them difficult to use their hands and their arms, right? So maybe in kindergarten you're working on simply getting in and out of a chair, and now they're able to get in and out of a chair and they're in fifth grade, and now we're working on, I don't know, zipping our jacket and holding a pencil, and then maybe by ninth grade, we're going to be working on carrying our own books, but it's always going to change just because, oh, the child sits in a chair, we're done, and so, again, that's always going to come from those assessments. Right. And it's always coming from need, right? So even if that child with dyslexia, if they are still really struggling, you don't just get to fade out, because, “Oh well, you just have dyslexia,” and I know that's not what you were saying, Lisa, but you hear all these different kinds of things from schools, so again, I really want to underline all of this is based on need. There's no blanket statement of, “We're going to fade out services,” or, “We don't do that,” or any of those statements, right? It's all based on the data, the assessments and what students need.
-- Absolutely. And anytime they want to end something, unless you completely agree, you're going to want to ask for an exit assessment, and technically they can't end something unless everybody agrees without an assessment showing the need is not needed. Don't call it an exit assessment. I shouldn't have said those words. Strike that. But you want to do an assessment to show that the needs are not there. Where the words exit assessment might be relevant is if your child's getting a diploma, and they're having their last assessment, so that's where my brain went. -- Got it. Well, and another thing that we've touched on in a couple different ways is socialization, and school isn't working if our kids don't have friends. So how can we bring in socialization and friendships to the IEP? Yeah. This is actually... this is an area that I think a lot of times we struggle with our teams because we're going to hear... If we push, we're going to hear things like, “Well, we can't make them have friends,” or “We can't make friends want to be with them,” right? And that's actually true, right? So what you want to look at is, there's a lot of social skills goals that we can write in an IEP that are pretty... you can look on Undivided’s website. There's lots of goals, but I think that when we're talking about friendships at school, okay? I'm sorry, I am like the poster child for Undivided. There's a wonderful Undivided video by Mary Falv... How do you say her last name? Doctor Mary Falvey. Yeah. So maybe the team can put the link in the chat.
Amazing. Talks about proximity and all of those things. So thinking about what she talks about, I would try to get into the IEP in the notes or something that somebody, whoever that person is, identify, right? The resource teacher, the school counselor, the OT, I don't care. Well, encourage your child to join a middle school club. A lot of the clubs in middle school and high school, they have clubs at lunch, right? And these clubs are student run and student driven, so they can be the Minecraft club, or the Dungeons and Dragons -- ok, aged myself -- club, or the reading club, or the chess club, or the Lego club, whatever. Encourage them to help your child get into that club. Now they're open to everybody, but what I... some of our kids might need that prompting, like, “Hey, let's go up to Miss Smith's room. The Lego club’s in there and you love Legos. Let's go check it out.” And those types of situations tend to be easier for kids with social skills concerns, because you know what you're going to talk about in the Lego Club and you know what is expected in a Lego club, right? That's easy. You don't have to try to figure out what to talk about, especially for our kids that might be autistic or have those type of things. So those are the types of things. I would also make sure that regardless of whatever class your child is in, whether it's a special education class or a general education class or a combination, that you are on those mailing lists from the room moms, or whoever handles that so that you know when there's a dance or when there is a school wide event, trunk-or-treat or whatever, and make an effort to get your child there, so that they can have that opportunity too. Yeah. I have frequently heard and experienced in special ed classes a lot of times, yeah, the... those parents can be left off of those communications or even if... hey, let's have something where everyone's going to go meet at a park, right? If your child is in a special ed class, how do we make sure all that communication is happening so that you know everything that's going on socially in and out of school as well? And, Lisa, I've asked about a lot of specifics, but sometimes we don't know what our kids need.
I mean, we know things aren't working, but we don't know why or what could help, and many parents just know my kid isn't getting it or they're frustrated or they're not making progress, and most of us aren't teachers, so we know our kids, but we don't always know how to help them, so how are we supposed to know what we don't know? And the school is supposed to know, but how can we get help if we feel like the school is holding back? Okay, I have a couple, two things. So the first one is, ask the school. Don't accuse. We're always going to come at this from a place of collaboration as much as possible. I know some of us have been really burned by our schools, but let's start just by asking. Ask about communication logs. Ask about what's going on. You don't know what you don't know is the premise of your question, and the only way that you can find out what you don't know is if someone tells you or you read it, right? So just start by asking. But my bigger answer is find your community, and I cannot stress this enough. This isn't even advocate advice. This is mom advice.
I have a 21 year old, an 18 year old, and a 12 year old with disabilities, and if I had not found my community and what I mean by that is when my oldest was diagnosed, we have these Google, Yahoo email listservs. Yes, I just aged myself. -- I remember those. And that was where I found out what I didn't know. I would say... I would ask questions of people, like, “Oh, my kid's not learning this,” or, “My kid’s having this problem,” and they would be like, “Oh...” That's how I learned about Regional Center for the first time, okay? And now we have Facebook groups, we have disability specific organizations. There's... for Down syndrome, there is Club 21 and Down syndrome organizations. There's a cerebral palsy association. There's the autism groups. There are so many organizations and Undivided. Undivided... I’m apparently the poster child today for Undivided, but Undivided has a Facebook group. I just asked a question in there yesterday about earthquakes and my kids, so find your community, and I know a lot of people think they don't have time, but this could totally be what you do before bed when we... what we currently call doomscrolling. Go into some of these groups and just read some other people's posts and you will find... you will learn things that you didn't even know you didn't know. It doesn't all have to be doom, but yes. Right. Well, and I know, but I'm just saying, if we have this thing we call doomscrolling right now, right?
Okay, so go to a parenting group that's for your disability or not, it can be general, and read, and that's really how you're going to learn and listen. Yeah. Community, community, community, and... --Community Super great points when you're talking about that relationship, collaboration, communication, because this is a relationship that requires both, right, with the schools. That is a partnership, and in many cases, depending on how long you're in a district, that could last over a decade, but Lisa, despite our greatest efforts and all the tips that you're sharing today, if things are still not working, what are our options? Yeah. Well, in California... Well, I'm kind of jumping ahead a little bit, right, but you should look at getting an advocate to help you, potentially an attorney, depending where you are in the process, right, life if you're ready to try to file or something. You can also turn to friends. Have friends go to a meeting with you. I wanted to say, in California, we have this amazing right that most states don't have, and that is we can look at an IEP almost like a cafeteria. Take what you want and leave what you don't. So we've never ever... I've decided every single interview I do I'm going to say this. Never, in California specifically, never don't sign your IEP. That is the worst advice I hear over and over is if you disagree, don't sign. At a minimum, you want to sign your child is eligible, that you agree they're eligible for special education, and possibly there are other things. Maybe you can agree to the accommodations, maybe there's a goal you like, right? But don't leave it unsigned, so sign with your what you don't agree with.
Be very clear and get someone to go with you to the IEP meeting and brainstorm with you before. Talk. Sit down and talk about it and get your ideas sort of sorted before you go into the meeting. And if we make a request and the school says, “No,” what do we do immediately? Well, you're going to sign that IEP partially, right? Meaning you're going to sign what you agree and disagree. The school should give you something called a prior written notice, which... PWN for short, which... a prior written notice has very specific parts that they need to have in there. They need to tell you what action they're taking or not taking, why, what data they use to make that decision, and tell you what you can do if you continue to disagree, which is like an appeal process. And we have videos on that too. Yeah. Yes, definitely. And I'm looking at the time. So, Lisa, what is the most important thing that parents should walk away with today when things aren’t working at school? I would say the most important thing out of everything I've said is a lot of questions. Ask open ended questions. Avoid, “Are you using the accommodations?” “What accommodations are working for you? Which ones aren't?” Ask open ended questions and start gathering information. That should be your first step. I love that.
Thank you. Thank you, Lisa. Thank you for driving home what I know everyone watching here already knows, but that when things aren't working, it's not a sign to give up. It is time to dig deeper, ask lots of questions, gather data, encourage transparent communication, and have data driven and student centered discussions. And like Lisa said, remember, you are the expert on your child. You also deserve a team that listens, collaborates, and follows through and we hope that can happen, and when it doesn't, as Lisa discussed today, you do have options. You also have a partner in Undivided. Please stay connected with us. Join our parents only Facebook group. You can also find us on Instagram, YouTube, LinkedIn, X, and now Pinterest. So thank you again to Lisa and to all of you. Our mission is to support you so your children can thrive and we want you to thrive too. We'll see you soon. -- Bye.
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