Back to School: One-Month IEP Check-in with Education Advocate Lisa Carey

Hey, everybody, welcome to Undivided Live. I'm Lindsay Crain and I head the Content and Community teams at Undivided. We are happy to be back for our first live chat of the school year. We are going to cover the most important questions we should be asking ourselves, our children and our school teams to ensure things are on track for this year. Many of our kids have been back in class for a couple of weeks, and things are starting to settle in, which means we can really start seeing what's working, what's in place, and unfortunately, what isn’t. So we also might be discovering new needs that have surfaced since last year's IEP. And we know how hard you work to get that IEP just right, but it helps no one, least of all your child, if that IEP isn't being followed or doesn't capture what your child needs today, which means it is time for our back-to-school one month check in, otherwise known as the reality check, and thankfully, we have the perfect person here to help us navigate and that is Undivided Education Advocate Lisa Carey. Lisa has advocated for thousands of families with IEPs, including her own. She's also the mother of three sons with disabilities. Hey, Lisa, welcome back.

Hi, I'm excited to be here.

Always, always glad to have you. And for our member families, you have access to our step-by-step guides in your Undivided account. Our how-to's break down every subject we'll be talking about today with step-by-step instructions on how you can tackle all of your IEP priorities. You can also upload all of your own documents to your digital binder for emails with your team to IEPs and assessments to doctor recommendations. You can work through goals and create task lists, all within your Undivided workspace. Everything you need is in one place. If you're not a member and you want to hear more about how Undivided can support your family, check out the Kickstart link, but for today, let's face that reality check and get this school year headed in a positive direction. So Lisa, let's start with something we received, and we always receive a lot of questions about accommodations, so some of our kids might have four accommodations in their IEP and others might have 40, and way too often, sadly, kids are not receiving the accommodations outlined in their IEPs or they're not receiving them properly, which means they're not getting appropriate access throughout their school day. So Lisa, what should we be doing and asking to assess if our kids are receiving the accommodations in their IEPs?

Right, so, before I directly answer, I want to say one thing that you talked about... Some kids might have four and some might have 40. So typically accommodations are as needed, right? Meaning if your kid has 40 accommodations, the expectation shouldn't be that they're giving them every single one of those every single day. Accommodations are typically as needed. So let's just say your child has extra breaks as an accommodation, and they're doing an assignment and they're doing great. They're happy, they're doing it, they're following directions, everything's going great. You certainly don't want the teacher to go up and go, “Hey, you need to go take a break,” right? So they're as needed. So how do you find out? Well, I think today there's going to be sort of a theme that you're going to hear from me about simply ask, and I would start by asking your child, if you can. I know some kids you can't, and that won't work, but if you can, start by asking your child, right? “Hey, are you getting... where are you taking your tests?” Or, “Are you using your fidgets?” or whatever it is. And then ask the teacher. I always want people to approach this from a place of collaboration. We always want to start there. We want them to communicate with us, so just start by asking the teacher some open ended questions like, “How is it going?” right? “What do you do when my child becomes disregulated?” or, “What do you do when you notice my child is fidgeting?” or whatever it is, right? Hopefully they're going to answer the question the way that you're expecting, which is they're going to use an accommodation and also take a look at what comes home and try to kind of glean some information from that. You're going to sort of be a detective, but really start by asking, right? If the teacher says, “Oh, when they get disregulated, they're so disruptive. I don't know what to do with them. I'll try to distract them.” Well, ‘distract them’ is probably not an accommodation, right? So, that's not to say that they can never try distraction, but it will start to give you a clue.

And if the accommodations aren't being provided consistently, correctly, or at all, should we automatically call an IEP?

I am not a fan of automatically calling an IEP, and I hate to say for every little thing because some... it may not be little, right? If your kid is not getting their accommodations, could be a big deal, right? I want to start by talking to the teacher directly, emailing with them, and talking to the team. Maybe you need to email the OT and say, “Hey, I don't think that my child is getting fidgets in the class. Can you please check on that?” A lot of times that can solve it. A lot of times they just didn't know. The other thing that, if you still haven't, one of the things that Undivided is amazing for is we provide our clients an ‘all about me’ kind of document, which explains what works and what doesn't, and so if you haven't done one of those yet, I would do that so that the teacher sort of has, in their case, the things that work well for your child and the things that don't. And it's not too late, and we shouldn't always assume that they've read the entire IEP. I'm sure everyone listening probably understands that very well, and we don’t have to say it, but as a reminder, so it's nice.

I mean, I know you do this, Lisa. I know I do. I know a lot of us here do, and I always get like, “Thank you. This is so helpful,” right? It's those highlights and so... and you can always call a team meeting or a meeting with your teacher. It doesn't always have to be an IEP meeting, and like you said, coming back to that collaboration point and talk about it, right, if things aren't happening. And really, Lisa, same question for modifications. What should we be looking for and asking about to ensure that lessons, classwork, and homework are accessible and appropriately modified?

So, if your child has modifications in their IEP, and not all children do, right? You're going to want to ask the teacher who's doing the modifications, right? And again you're going to want to ask in an open ended kind of collaborative way, just say, like, “Hey, we're off to a new school year, and I just wondered who was helping you with the modifications.” That's going to give you a hint, because the teacher's either going to have a quick, fast, ready answer or they're going to give you the stare, right? So I would start by asking. Another hint is that if your child does need a lot of modifications, is that in the IEP? Like, is there time for a person. Now, there might be time for that personal meeting. It might be your special education teacher, whether that is a resource teacher, SAI, or inclusion specialist or whatever your district calls it, that's a way to check that. And then you want to look at what they bring home, right? Are they bringing home anything that appears modified, right? If they bring home something, one or two things that are not modified, generally I say ask because sometimes, for example, they might have a volunteer parent in the room and they say, “Put this homework in everybody's box.” They don't say, “Put it in everybody's box but Alyssa,” right? So just because it comes home not modified, doesn't mean that they're not necessarily modifying. And then check Google Classrooms or Canvas or Schoology or whatever it is your school uses to see what the teachers are entering in there and what you can also glean from there.

Yeah, and now with so much being online, it can be easier than it used to be to check up, to see what's happening. Obviously, if you're helping with homework, you're seeing that firsthand, if things are happening or not, but, I mean, we do hear from from families, Lisa... I mean, if they're not seeing any work samples, should we ask for work samples throughout the year? Do we wait until progress reports? How do we stay on top of things?

You should be seeing some work samples, so I would ask for sure. If you don't see them, you can ask the teacher. I had a couple teachers one time who were keeping all the work samples to show the parents in the IEP. I understand what the teacher was doing, but I would ask them to start sending home some work so you can see what's going on. Also, I'm sure everybody here understands this as well, but just as a reminder, just because something is modified doesn't mean that it is appropriate. So just those questions to ask yourself. If it's requiring maximum prompting, you might need to talk about some different modifications or additional accommodations.

So just to stay on top of that, just because somebody's saying, “Yeah, we're modifying,” if you're seeing it and it doesn't make sense, like Lisa said, just ask those questions, and everything we're saying today is probably going to come back to communication, and communication is key, so I'd really like to talk about communication logs, something we also get a lot of questions about. They can promote communication and transparency between families and the school teams. They can also help us understand what's happening with our kids throughout the day, because some students will come home and tell their parents what's happening and others won't, and then there's others who can, but they don't want to, and then there's some students who may not be able to communicate or articulate what's happening through the day, and it just makes it very hard for us to follow through with the appropriate supports at home. So, Lisa, tell us first how communication logs can help.

Communication logs are very important, especially for children with communication difficulties, right? The thing I like to bring up in meetings and with parents is if you're... if you have a... and I'm right now, I'm talking about children who have difficulties with communication first, right? If you have a child, a typically developing child, they might come home from school and tell you that a classmate was out sick, that there was a substitute teacher, that they had a fire drill, that math was really hard, right? And as a parent, you're able to engage with your child about their day. If your child has communication difficulties, whether it's communication disorder or an access to communication issue, if they have, like, a complex body, you don't have that opportunity, and not only do you, as a parent, not have that opportunity, your child doesn't have the opportunity to share your day, and this is a very important piece of it. And I know a lot of you are thinking, well, it's more important than that and I'm going to get there, but that's like the first sort of level of why they're important. The next level is if your child has any sort of medical problems, whether it be they take their food through a G-tube, or they have asthma and you need to know what's going on. I have one school that refused, were very difficult, and the child had constipation issues and the parent was treating the child at home for constipation, and the school wasn't providing communication. It was very effective when the parent said, “Hey, if I don't know if they had a bowel movement, I'm going to keep treating them, and then if they get diarrhea at school, you're not going to be happy.” So the school sort of got motivated to start sharing. I would present it to the school in a positive light, right? You're not asking so you can be controlling and overbearing, and I know that you're not, but a lot of times we come across that, including me, come across that way to the school. So you just frame it as though you want to be supportive of what's happening at school, right? You want to... You want to... and then the other thing, which I want to mention, is you also, as a parent, need to decide what it is you want to know and what it is you need to know and how frequently you actually need that. So, for example, if that's your child who's struggling with some medical things, you need to know daily, did they eat? Did they poop? Whatever the issue is, right? You probably want to know who they played with and what book they read in Reading Circle, right? And so you could have more than one communication log. You could have a daily checklist that tells you, yes, the child, like... yes or no. Poop. No. That takes the teacher... and I'll talk about this, I'm thinking a little bit later, about who fills it out, and then you could have more of a weekly log that kind of updates a little bit more detail for you, so you could be open to not getting all of the details about every single thing, every single day, because that is a lot.

I do want to also make a point of clarification. I want to make sure that communication logs aren't being used interchangeably with service logs, so can you explain the difference?

Yes, that's a great question. A service log, right, is... it tells you when your child saw what provider and for how long. So, for example, it may say, September 10th, speech, one hour, or whatever it is, and it's kind of a list of when those services were provided.

And I don't think we touched on, that’s service log, so for communication log, what should be included or what could be included in the communication log, and I think you kind of already covered that, but there could be a checklist. It could be maybe a list of classes of what book they read that day, so we can continue that conversation at home. Is there anything else that you wanted to add to that that you didn't say before, Lisa?

I think that the communication log, if you need it daily, right, then what you're looking at daily is going to be things that are related to their safety and health and well-being. That is a daily kind of communication. Now, if something happened in that day that is extraordinary, out of the usual, whatever, then you should get that communication that day, just like with a typical child, right, if there was an injury or a meltdown that was unusual for your child. Then maybe weekly, then you might ask for a little bit more information about maybe what topics are being discussed in class and that kind of thing, or social interactions, but again, this is going to be very different, right? If you have a verbal child who is a decent communicator, but maybe they're a little untrustworthy, meaning because they don't recall events correctly, you might need a little bit less information than if you have a completely nonverbal four-year-old who has no communication or very limited. Nobody has no communication, but very limited communication. You're going to need different things, right? If you have a medically complex kiddo, you're certainly going to need more than if you have a kiddo that has learning disabilities, but no medical complexities, so you really need to, as a parent, gauge what it is you're looking for, and be specific. We tell the schools, I want a communication log. That can mean a very different thing for one family than another, so be specific what it is you're interested in learning about.

But Lisa, one thing we hear time and time again, what if a district says that they can't or they won't provide a communication log? Is that their right?

I would ask for their suggestions for an alternative to start, right? So if they say we can't, right, then I would say, “Well, what do you suggest then? What's an alternative? How do you manage it for other families?” Sometimes I've heard of families using a shared Google doc, right, where the teacher and the parent, and oftentimes the OT and the speech therapist, everybody's on it and they can sort of communicate, right? Another one that I really like is especially for those checklists that you need is having the aide fill it out, and then at the end of the day, the teacher can look at it, right? I know that a lot of schools are going to say the aide can't directly communicate with the parent, which is a whole other discussion, but the aide could fill it out throughout the day. Did the child poop? Did the child eat? Whatever you need to know. I keep saying poop today. I don’t know why. And then the teacher can look at it at the end of the day and sign off on it or whatever their preference is. So there are different ways to approach it. You don't have to have necessarily hopefully a communication, detailed, extensive communication every day. We all want that, but it is a lot even if your child's in a special day class and they're six or eight or 12 kids, that's a lot. That's an hour of work from that teachers day potentially for all the kids, and I know we don't care so much about all the kids, but we do sort of... if it's something you can get weekly, then that's where I would go with it. Does that make sense?

Yeah, it does make sense, and even as you were saying that the example about the class, it's like, well then, let's figure out if that's something that the district comes back with, like, there's not enough time in that... in the teacher's day to be able to do this. It's like, well, let's think of something like you were saying, Lisa, maybe the checklist, maybe there's something to start where, like you said, there could at least... you can have some idea of what happened in that day, an easy way, and then on a weekly basis, something deeper, just to continue to have those conversations and try to come up with something that works for everybody, and then, communication logs can also be helpful to know what's happening with your child's related service providers. Again, different than the service logs, but what are they working on? Are they meeting when they're supposed to? Who is working with them? But what happens if we discover that our kids are not receiving services, or they're not receiving their full amount of minutes, how should we respond?

If they're not receiving their services or their full services, right, I would start by sending an email, preferably to your case carrier for your child so that’s the person who contacts you when there's a need to be an IEP meeting, generally speaking, and let them know that you recently found out that the school doesn't have a speech therapist or that the speech therapist is coming once a week instead of twice, whatever it is, and ask what the school's plan is to remedy it. That is your first start. Hopefully you're going to get a remedy, right, that will start at some point in the future. And then your next question is how... what's the plan to make up the hours, okay? I would want that in writing, so if they respond to you verbally, I would email them after and say, “Thank you so much for letting me know the plan as I understood it. This is the plan. Let me know if I get this wrong,” just so you have some sort of documentation, and then at the next IEP meeting, you're going to want to talk about this again to see what compensatory minutes... and compensatory is basically minutes that they owe you because they didn't do something that they were supposed to do in the IEP, and they can be documented in the IEP too, and they often are. So the next meeting I would bring that up. If it is extensive, meaning if they don't have a speech therapist for two weeks, okay, they owe you two weeks. They're going to make up two weeks, but if they don't have a speech therapist for six months, then you're going to want to think about what that compensatory service is going to look like. Do you want your child pulled out of class double the time for the next six months? Maybe not. So maybe instead you're going to want to look at alternatives for meeting those minutes outside of school.

I mean, I'm sure you've heard it all, Lisa, but I have a lot of friends who all of a sudden, it's kind of like, “Hey, what's going on with speech therapy?” It's like, “Oh, the speech therapist has been on maternity leave.” It’s like, what...? So sometimes communication gets missed in there, so it's another thing that could be on the checklist, right? Like maybe you don't know everything they're doing in every session throughout the week, but a check that they’re doing it, and then those regular check ins of what's happening too might be something to think about. And another tool that supports positive communication and allows teams to get to know our kids are team trainings, so when should parents consider requesting trainings and who should be present?

When someone asks me about team trainings, right, I usually think of communication like an AAC, so for something like that, I think, and this is, again, for any communication, when a child is using something other than mouth words, when I say AAC, right? It could be Eyegaze, it could be an iPad, whatever. It's also good for behavior plans, right? If you have a child that's exhibiting a behavior, you want everybody on the same page, especially if you have a child that might have some language and communication difficulties. You want everybody to use the same words around the behavior, right? Like if you take timeouts or breaks or body breaks or whatever, we want to all use the same words, and so a team training is basically to get everybody who works with the child using those same words or using the device in the same way, or understanding how to interpret the Eyegaze, or whatever it is. And I like for parents to be involved in the training when possible. I always request when you train the school staff, may I attend on Zoom or in person. Sometimes schools are like, “No,” and other times schools are, “We love to have you.” That's the best way to get everybody on the same page. And then the other thing is I like to get the training in the IEP, and a lot of times I'll see the training in the IEP is like six... 30 minutes a year for training or 60 minutes or whatever it is. I actually like to see the words that talk about at the beginning of the school year, and any time someone new starts to work with the child. The reason is, is if you train, for example, an aide in August or September, and then the child has a new aide in December, they're not trained, they don't know how to use it, so I like to have like... ‘and anytime someone new starts to work with the child.’ The training is super important, especially for communication systems and behavior. The other kind of training that comes to mind really quickly is around health. If you have a child that needs... that has a trach, or a G-tube, or has some... they need the magnet system for seizures or whatever it is, and that training is going to be a little bit different. That training is going to be informed by a doctor's order, and then the school nurse will be involved and the parent absolutely should be involved in that training. That is not an area that I would sort of budge on, because it's super important that everybody is following whatever protocol is needed for the health and safety.

And I actually have a follow up on the health... on the health question, but really quickly, another example, team trainings, when you have a complex kiddo that has maybe a lot of related services, if they're getting vision, they're getting deaf and hard of hearing, they have a health plan, they have a behavior plan. It's really important to get that team together. So... because you know, you can't... it's overwhelming for new team members to really know, and they usually want to understand how they're supposed to be implementing this and really understand the child, obviously way beyond what they're just going to read in an IEP or what they're not going to read. So it's another way to get everybody really communicating, and so they know who they can go to if they have a question, so they don't feel like they're just kind of isolated not knowing how to help your child. And then on the health... on the health issue that you just mentioned, it's a really great point. And also a question we get a lot about training, so we think of just like this is our teachers, but our kids spend time in multiple spaces throughout the day, so for example, if your child has a health plan that includes a seizure protocol, staff would need to be trained in all areas where that child spends time, right? It's maybe not just their teachers.

Right. So I have several clients that have a rescue med. They’re for seizures. There are rescue meds for other things like EpiPens and stuff, but seizures specifically, usually there is a specific amount of time that you have to administer the medication and that time is minutes. It's usually under five minutes, if I'm not mistaken. I'm not an expert in this area, but there is a time, and I have been to many IEPs where I get to hear the whole story about how medications have to be kept in the office for the safety of other kids and blah, blah, blah, blah, blah, blah, blah. And I'm going to say, I do not have a child with a seizure disorder. This is unacceptable. This is not okay. What I always recommend is that the school... and I always tell the parents, you buy it, right? It's $10 on Amazon. You get a fanny pack and the aide wears the seizure medication or the EpiPen or whatever it is in the fanny pack around their waist, and when the aide shifts change because they go to lunch or they go to the bathroom, whoever's with that child, the fanny pack just transfers from that aide to the next aide, and then at the end of the day, you lock it up in the office, and I think for any sort of rescue med, this is something that people need to insist upon. I do not like it... You know, sometimes they’ll keep it in a lock box in the classroom. Well, that works really great, but if you're in music or library or at assembly, you could... You lose more than the time it takes to get to the classroom, find the key for the classroom, find the key for the lock box. It’s too much, so that's something that I insist.

That's a really interesting point. I know that there's people actually that work on our staff who had to get attorneys to ask for that for their children, because it was pushed back against so hard. And what about same question though, Lisa, for behavior support. Could we request that maybe lunch and recess staff be trained on how to support our kids properly during these times? Because again, I hear over and over really negative things about people, how they might be thinking they're supporting with behavior that's really off target of what that child or any child might need.

First off, as you know, you can ask for anything, right? And I would. And I would ask for these things in... both in email and then again at the next IEP where you're hopefully audio recording and ask them to put in the notes your request. I think that some schools are going to be easy about this and some schools are not. I think the answer is going to be drastically different, right? I've been to schools that are like, “Absolutely,” and then I ask, “who's going to talk to the lunch staff. Is that going to be the teacher? The BCBA? The OT? Who's going to do it?” And then I'll follow up with that person a week later and be like, “Hey, did you have a chance to talk to lunch staff?” Right? I think that if they say no, it's definitely more challenging how to proceed. I would definitely document that in the IEP notes or in your email that they have said no, and then you can sort of follow up with questions, maybe talk to an advocate and figure out the next way to proceed. This is more important for kids that have some real significant needs, right? If your kid has a behavior plan, but it's like maybe off task behavior during academics, and that may not be as important in the lunchroom, but if your kid is hitting other kids or spitting or doing something that's kind of more important to be on top of... not... important’s the wrong word, sorry. You know what I mean, right? Then that needs to be conveyed to everybody who's with them if they don't have an aide, and if they do have an aide, then it's the aide’s responsibility. Do they elope? Are they... Are there behaviors that could provoke certain responses in adults that might not be safe? There's a lot of... there's a lot of situations that training is always a good thing.

So... and Lisa, where do we add these trainings in our IEP?

That is going to be different by district, but generally speaking, if the training is going to be provided by a provider on your IEP, so that might be like we're talking about, a behavior plan, that might be a BCBA, which is called like the BID, or the intensive individual services. Whatever district you're in, typically you're going to want to have right on that service, ‘Read,’ so where it says, for example, speech 30 minutes, twice a week, right? You're going to want to add a training block that will say 60 minutes consult, yearly, indirect, those kinds of words. Indirect means not direct to your child, but instead they're working with the staff. That's what that indirect means, and you can get it right on the service grid. If they won’t do that, at least get it documented in the notes, but because if it's in the IEP, it's in the IEP. This is something I've come across lately a couple of times where something has been in the IEP in writing, where it specifically says something very clearly, and then the school goes, “But it wasn't on the service grid, so we don't have to do it,” which is, by the way, incorrect. If it’s in the IEP, it's in the IEP. But if you can get it in the service grid, you might avoid that hassle.

Another area that I know a lot of us are concerned about, as school is coming back is socialization, and again kids may come home and tell you everything about their day. I think anyone who's a parent probably knows that, you know, not always the case. And for us, that could be for various number of reasons. And so what do we... what do we need to have in place to encourage healthy socialization, and what questions can we ask our kids and their team to ensure that they... that they are socializing with their peers throughout the day? That's, I know, a huge point of worry for a lot of us.

Yeah. The longer I've been an advocate, the more my style is questions. I ask open ended questions and then like, I'll tell you a secret. I've literally had to bite my tongue to not interrupt sometimes because I like to talk, and I have found that when you ask questions and then you stop talking and wait, people feel obligated to talk, and you can learn so much by just simply asking questions. Even if you think your school is going to lie to you, which I hear a lot, still ask the questions because they will say more than they intend to say a lot of times, and so I will ask questions like, “What does it look like when Ellie has free play? Does she choose the same peers?” Right? Or, “What types of games does she play during recess?” Okay? And this is a magnificent way to find out what's going on. Sadly, you might hear, “Oh, she goes off in the corner by herself,” right? And that's heartbreaking, but we want to know that. Or the kids don't want to play with him because he is bossy. I don't know, whatever. So this is a good way to figure it out. And then your next question could be like, “What are we doing to help facilitate her social skills? What are we doing to help facilitate her interactions with her peers?” and a lot of times they're not going to have a great answer, and so then your next step might be to ask for a recreation therapy assessment, rec therapy, or see if the school has a social skills group. If your child's in middle or high school, very often they have clubs for kids with shared interests, which are so much easier for our kids with social skills because they know what they're supposed to talk about. If it's a Dungeons and Dragons club, they know I'm going to go in here and I'm going to talk about Dungeons and Dragons and everyone else who’s here wants to also talk about Dungeons and Dragons, so that's also a great way to facilitate it.

Well, and that's a great point. If our child does require facilitation in socializing or communicating, can someone support during those more social times?

The short answer is yes. You can start by asking the question, but you might need to find that as a service in the IEP, which would often be rec therapy. If there is an aide available, sometimes there's social skills group, sometimes it's going to depend on the level of need. I've seen counselors... not counselors like in high school that decide your schedule, but like, school counselors, like the therapist type, that can help facilitate too, so it's going to depend on the school. Most of the time, though, I would... I would be going with a rec therapy assessment. I just mentioned the other things because if the school does say, “Well, why don't we try having Mrs. So-and-so help him?” if there's no harm in trying it for a week or two, great, but you can also request an assessment.

--

Right.

And the answer is not that you just have to live with the fact that Johnny is sitting alone in a corner. Right.

There are... There are things that we can do. Right. And you mentioned aides, obviously. You know, we get a lot of question about aides. They can often be a really integral part of access for kids throughout the day, and unfortunately, the turnover rate for aides can be quite high. There's still a huge shortage, and if a child is assigned different aides on a weekly basis, something, sadly, that we do hear a lot, is that a reality that families have to accept? What should our expectations be?

So we could do an entire hour about this subject and still barely touch it. So yes, there is a shortage of aides. There is actually a shortage, I think, of all of our providers involved, the speech therapist, the OT, there is just a shortage and it's statewide. I venture to say it's the whole country, but I know for sure it’s statewide. I know how important 1:1 aides are. One of my own children has an aide, and there's no way he could attend school safely without it, so I think the first step here is to step back as a parent and really think through when your child needs an aide and when they don't, okay? If your child needs an aide from drop off to pick up, fine, then that's what we're going to focus on, and that's what we need to work towards, but there are some kids that only need an aide during free time, and they do fine during structured time. There's some kids that need an aide during structured time and not free time, right? So think it through. Maybe your kid’s fantastic in art and they have no... It’s their favorite subject and they're the best student. But math? Forget it. They need the aide, right? So think through when your kid really needs an aide and the next thing is to document it. Earlier we talked about service logs and asking and doing it in email. I would email the case carrier and copy the teacher and say it’s come to your attention that your child is not consistently getting an aide. What is the school's plan to rectify it? Ask an open ended question, because we want them to talk, okay? And you're going to go from there depending on their answer. As far as getting different aides, unfortunately, it's very hard to force them to give your child the same aide. You're not going to get an aide ever in an IEP. They may put something like, “The team feels that it would benefit Johnny to have a consistent aide day to day,” but it's going to be very hard without moving on to an attorney or an advocate or potentially to force that. And I don't know, I'm not an attorney, can't give legal advice, right? But I don't know that there's really... that's really something that you can force to have the same person. It's something that you can advocate for and request. I've actually been successful getting that done, because if it's happening because of a shortage, it's more difficult. If it's happening because the school's just moving, the district is moving aides around, then you can push for them to stop moving your child's aide and I have seen that be successful.

Okay. And another huge question that we always get is that it's also hard to gauge if a child's aide is effective, especially when districts don't allow... many districts, I should say, don't allow direct communication with the aide. So can we speak to the aide or ask that they fill out a log, which I know we kind of talked about, but what is the answer for this, Lisa?

This is going to depend on the specific school, the culture, the district, right? I love it when the aides fill out the communication log, right? So if you can get that with the teacher approving it at the end of the day, that's a good fit. The other thing is that we say that you're not allowed to talk to the aide, but you are actually allowed to talk to the aide. The aide’s not allowed to talk to you, okay? So I don't know if you've ever had a family member with a medical problem where they couldn't talk to you, but you've called and you're like, “I know you can't tell me anything, but you can listen to what I have to say. You don't have to respond,” right? Kind of take that approach without being so aggressive like I just was. And I'll... I have found that asking the aide very innocuous questions, right, tends to start to open their mouth a little bit more. Questions like, “What did they have for lunch today?” Most aides are going to happily answer that because it's not about the kid. “Oh, the cafeteria served hot dogs,” and just be super friendly and chatty. I will say that if you ever get an aide that does speak to you or any staff member, parents, don't throw them under the bus. You heard that information somewhere else. Never say, “The aide told me,” ever, ever. Say, “A parent I'm friends with was on campus,” or if you don't want to lie, because that's kind of lying so I’ll change that, say, “I know somebody else who was on... I know somebody who was on campus and saw him running across the yard yesterday. What's going on?” Don't say, “The aide told me,” because you're going to lose that and I tend to not lie. I really try hard to... and I try to phrase it in a way where I'll just say, “Hey, somebody I know saw him running across the yard,” or whatever. What about you... Don’t throw your aide under the bus.

Yeah, but if the school says you can't have contact, you have to drop your child off, not see the aide, pick them up like they really... there's, like, absolutely no contact because I will say again, I know we can go back to the log and you can write things in about like, this is how their night is, this is how their morning was, but is that okay, Lisa? Are there questions parents should ask or is that something that we have to accept?

So then I would push for a handoff with the aide present and a supervising person, like the teacher or whoever, right? So what it is, is they... the reason this role exists, let me just put it out there from the district's point of view, which I don't agree with, but this is the reason. Aides aren't trained on what to not say to you. That's what it is. The aide is also not responsible for your child's education. They help facilitate, but they're not a teacher, and so they want a teacher or an admin or somebody aware of what communication’s going back and forth between the parents, so you can often start off by requesting that the hand off in the morning or the afternoon, be with the aide present and the administrator or the teacher, whoever they want it to be, and then you can ask those very casual questions. Did they use the bathroom today? Did they have a good day? What did they eat for lunch? And hopefully as time goes on, it gets a little bit more relaxed, but that's what I would ask, for that touching base with someone else present. Like you can just keep asking. Probably this is going to feel really repetitive to everything we're saying, but you just kind of come back, try to work together, try to find something that's going to work, that's going to be benefiting the child that everyone you know can agree upon. Obviously, that can't always happen, and then you have to go from there.

And I see that Clarice has a similar question that I was going to ask as well, something, again, we hear all the time. Lisa, can you clarify the right to an aide for field trips or after school and off site activities? What does the school have... When do they have to provide that aide?

So the department, the Federal Department of Education, right? They have made it really clear there's some guidance that, if whatever supports are in a child's IEP have to be available to that child for all school activities, okay? And generally, the way we think about it is if that activity is available to every other student on that campus, right, maybe it's being in the after school... maybe it's being in a play that practices after school on Wednesdays, maybe it's being in the band who has performance across town or a field trip, then they have to provide that, okay? Now, if, for example, your child wants to be on the basketball team, they still have to try out like every other student, right? They don't get to be on the basketball team just because they have an IEP, but if they try out and make the basketball team and your child needs those supports, they have to provide that. Where it gets in my mind a little bit more blurry is if there is an outside company like a YMCA or Beyond the Bell or whatever it's called, that's providing an after school care or enrichment classes or whatnot, that is not available to everybody because people pay for it and stuff like that, like they might have requirements like sometimes there's a chess club and you have to take the beginner before they whatever. And so there is still, in my understanding, an ADA right to access those, right? But it's approached a little bit differently, and there might be other funding sources there too, like Regional Center.

Right. Exactly. If it is something that's happening at the school but not school sponsored, then you can look into if your child's a Regional Center client, there are inclusion aides that you can inquire about. We also got a question from Rosa, which I think is interesting. Can we request to view the aides’ and teachers’ credentials?

Okay. So the teacher credentials you can view easily. You can... they're online, and you can also, by the way, view them for the speech therapist, the physical therapist, whatever. You can see their credentials online. and by the way, I recommend you guys do it. Look it up. Look up your teachers. You might be surprised to find some of them aren't actually credentialed. As far as the aides, generally, no. Generally, a district aide is somebody that has a high school diploma, is at least 18 years of age, has passed a background check, etc., and then they've had some district provided training. That's what a district aide is. If your aide is through an agency, like you have a nonpublic agency providing your aide service, then that nonpublic agency might be happy to tell you the credentials of the person that they've been sending to this campus to work with your child.

And I guess on the flip side, if your child requires someone with some kind of a specific training or background, then that's something that you can bring into the IEP, like you're saying, Lisa, is it appropriate? Which again, is... we can get into a whole different discussion, but is a district aide appropriate or do they need a specialized aide or somebody from an NPA, so...?

Right, and in some districts, what a district aide can do and what an NPA or nonpublic agency aide can do are different in some districts, so I've had cases where we wanted a district aide specifically for reasons in cases where we didn't.

What about our kids getting bullied? What can we do and how does the IEP fit into that plan?

Yeah, so I mean, I'm sure everyone knows, but bullying can be very serious. It is not something you should ignore. Not for a minute. There is a government website called stopbullying.gov that you can look at that will give you a clear definition of what bullying is. A kid being mean to your kid is not bullying. It's not okay, but it's not bullying. Bullying happens when there is unwanted aggressive behavior, and there's a perceived or real imbalance of power. It's repeated, over and over, and if there is bullying or suspected bullying, you immediately should make the school aware of it, and you should do it in a way that is documentable, meaning you're going to email everybody on the team, the entire IEP team. Everybody needs to know that there is this bullying happening, and I would ask them to confirm receipt of this email so that you know that they know, and then I would also ask them for a plan to address it, and we could do a whole segment on this, and I'm not an expert in bullying per se, but the plan, whatever it is, should not involve your child doing anything different. We don't move the child who's being bullied to a new math class. The bully needs to be moved, right? Unless, of course, the child says, “Mom, I don't want to be in there anymore,” that's okay, but part of the reason you want to document it is the school does have a greater liability and responsibility to protect kids with disabilities from being bullied and making the school aware and making sure the school acknowledges that they've been made aware are very important should it continue, and you need to get an attorney or an advocate or somebody to help you later on.

Yeah, and I just really want to reiterate what Lisa said about not making your child change. Something way too often... Yeah, I had a good friend and I mean, the school really thought they were helping, and every single suggestion they had was how their autistic son should act differently and that he doesn't understand social cues. Can he go get some training? Of course, middle school’s all about, like, kids not fitting in and all these horrible things that finally were corrected when it was elevated, and I don't think they were trying... they really thought they were doing the right thing, right? So we just can't reiterate that enough in so many cases of everything we're talking about today, when it comes back, trying to blame our children for their disability instead of looking how they're going to support and help our kids be successful, that's... we have to change that conversation. Okay, so another... and actually we got some questions about this with our RSVPs as well. A really important document to consider around your child’s safety is an emergency plan, so Lisa, if you could tell us what is included in an emergency plan and how can we ensure that it is in place, again, across all school environments?

So... Okay, so for me personally, right, where this became a thing is these awful school shootings, and these public shootings that we're seeing at malls and stuff, and I... I one time heard an expert... I wish I could tell you who it was. I don't know, someone on the news, right? And they were talking about how people were creatures of habit and that when somebody opens fire somewhere like a mall, people go to the mall entrance or exit closest to them to go and leave, which of course makes sense, right? But the social norms that we've had drilled into us our whole lives for some reason override common sense, and the common sense thing to do would be actually enter the nearest store, go to the back of the store and go out the employee entrance or the freight entrance. That is the common sense thing to do. I don't know if I ever would have thought of that without hearing this expert talk, and he said the reason is because we do things like a certain way over and over and over, that even in times of crisis, our brain gets into that. So where that leads me to think as a parent of a kid with an intellectual disability is the staff at schools are trained over and over that they cannot physically force the child to do anything. The staff cannot put their hands on your child. They can gently touch them on the shoulder, hold their hand or guide them, but they can't physically pick them up and move them. That is a big no no, right? And I thought, what happens if there is a legitimate emergency? Will you guys pick him up? And they're like, “Well, of course we will,” and I was like, “But have you told your paraprofessionals that you have permission to pick up the kids and move them in an emergency or are they going to just try to shoo them quickly?” and it seems like common sense, but that expert plays in my head. So an emergency plan should include what the staff’s going to do so that people read it and get something else in their head if there's an emergency. My own son's plan says that they're allowed to use tactile, which means pick them up, support, meaning they can pick my kid up. Another reason it's important is if you have a wheelchair user who... or a child who maybe is blind or visually impaired or something like that, and you're on a second floor of a building and the building catches fire, right? Well, the teacher is going to evacuate her classroom. Who's going to pick your kid up and carry him down the stairs? And if your kid is a 150 pound, 17 or 16 year old boy and his aide is a 100 pound woman, that's not going to be the one who picks him up, takes him down the stairs if the elevator's out. So they need to have plans for how they're going to safely evacuate or protect, and it can be something sweet and short. It doesn't have to be pages long. Mine is one page long, and it just simply says who's going to be responsible and clearly gives the staff permission to put their hands on my child if they need be. And I think by the paraprofessionals being given that to read and they're like, okay, if it happens, I'm allowed to, I'm hoping that it sort of overrides that norm in their brain that they're not allowed to, if that makes sense.

It does, and I can't tell you... I mean, I think I've said this before, but I had a friend whose son was... is a wheelchair user, and they had a fire drill, and they... When they went to the fire drill, he was supposed to be left in the landing and someone was supposed to come get him, and they never did, so he's texting his mom in the middle in tears, saying “They would have left me here to die. I would have burned up.” And so it is really important for whatever reason, that your child might need to have an emergency plan to have that to talk to everyone and everything that Lisa has said today, team trainings. Is everyone on the same page Is everyone trained in all circumstances and to just really... communication and just keep following up.

I want your teams to do more than just talk about it and plan. I want them to be able to execute it, right? But experts that I've watched and listened to tell us that simply talking about the plans and planning improves outcomes for everybody, so it's worth five minutes in your IEP to say, “Hey, what's going to happen if there's an earthquake or a fire drill, or please no, an active shooter?” right? “What... What... Who's responsible for my child? How is my child...? What if my child crouches on the ground and covers their ears instead of getting inside? What are you going to do? Who's going to do it?” Ask the questions. What if they're vocal? They... their... what if when things like that happen and they like to vocally stim and they're not going to get down and be quiet, right? Like talking about scenarios. And one other thing too is that for drills, I want my child to fully participate in all drills because there's that muscle memory, right? In February, we had that earthquake in Malibu and I was on campus. Those kids know what to do. The parents that were on campus got in the way, but the kids knew what to do, and it made me feel so happy to see kids knew what to do, and that is also what our emergency plan is that for drills, they let my child know that we're going to have a drill, and they put his headphones on the table in front of him, because that's how we do it with my kid and say, “If you want them, they're here,” and they warn him, and so when the drill happens, instead of him freaking out and not paying attention, he knows it's coming. He puts his headphones on, he lines up with everybody else. He follows what he’s supposed to do, so that muscle memory is being taught.

It's a great, great, great idea. A lot of questions about assessments. Our kids may develop new needs that are not addressed in their current IEP, so is it reasonable to ask for a new assessment at the beginning of the year?

Yeah, if you feel the need for an assessment, you should ask for it. However, you shouldn't ask for it more than once a year unless there's a significant change that calls for it. If your child's developed a new condition or something.

And can you remind us, Lisa, because I know we just had a question about an assessment, how long does a school have to conduct an assessment?

So when you request an assessment in writing, because if you don't ask in writing, it's not a real request, they have 15 days, calendar days to give you an assessment plan to sign. You have 15 days to sign it and give it back. This is the only place that there's actually a time limit on parents, by the way, and then from the time they receive it back, they have 60 days to do the assessment and hold the IEP meeting. School breaks of more than a week, pause the calendar or pause the timeline, I mean.

So placement. What if after these first few weeks, we don't feel like our child's classroom or maybe even their school is the right placement? What can we do?

Okay, so in this context of this question, right, placement is the type of classroom that your child's in, right? It might be gen ed, mild/moderate, a PALS program, whatever, and the school is actually the location, but either way this is an IEP meeting. If you want to talk about the placement you're... that's going to need to be an IEP meeting, so you're going to want to request an IEP meeting in writing, and they need to hold it within 30 days. So a reminder, if it's horrible just because you're starting out the year and that's where you are, it doesn't mean that you're necessarily stuck. You can call that IEP meeting and discuss.

Another thing that I really want to touch on, something we've been talking about a lot at Undivided, is California's new pathway to a diploma, but I'm talking to lots of parents who have not received any communication about this from their district. They didn't even know it was an option. So, Lisa, can you explain what this is and who qualifies? Because it's important as we're starting the year to make sure that everything, every class they're taking is going towards this diploma.

Yeah, so the alternative pathway to diploma is just another way to get a diploma. It's a diploma, right? It's not an alternative diploma. It's a regular diploma. It's just a different path to get it. That path is that it requires our kids to have what's called an essential understanding of the standards, which is really doable for a lot of kids with intellectual disability and other disabilities. So an example is, a math standard is to rewrite an expression involving radicals and rational exponents with the properties of exponents, blah blah blah, right? I wrote this down before here, rght? The essential understanding of that same standard is to create an array with number multiplied by itself three rows of three. So it is still the standard, but it's an essential part of the standard. To be eligible, the student needs to be eligible to take the CAA, the California Alternative Assessment, so in the spring when they take their standardized assessments, your child would be eligible to take that assessment. The reason I keep saying eligible that way is your child doesn't actually have to take that assessment, meaning if you’re a family that opts your child out of standardized tests, fine, but they need to be eligible for that assessment. and they need to have a cognitive disability. They call it a significant cognitive disability, right? They can’t not have that intellectual disability. The other important point is students who do get a diploma through the alternative pathway are still eligible to continue in the adult transition program til age 22. A lot of our schools are telling families, well, if they get that, then they're going to be done with school. That is absolutely not true, and there is guidance on the California Department of Education's website about this, that if they use the alternative path to get a diploma, they still go to the adult transition program til age 22. I think I covered the points.

I think you did and it's just important because as I was talking to a family who’s saying they're in a district that still says your child's on certificate track, your child's on certificate track. I'm like, have they talked to you about the alt pathway, this new pathway to the diploma? They have no idea. So ask those questions. If you're being told your child can't get a diploma, and if... and even if you're being told nothing and they are eligible for the CAA, like you said, the alternate assessment, ask those questions and make sure the classes they are in are set up, because there's all these sort of random little rules to make sure, and it's new, so schools are still learning how to do this, so just really ask those questions to make sure that everything they're doing will count as a credit toward their diploma. What is the most important tip that you want parents to remember as our kids are starting back to school this year?

The tip that I always start off with, but now we're a few weeks in, but it's good to repeat, is the first couple weeks of school, I just let everything go, if it's not safety to give the school a chance, especially for our younger kids, but the most important thing from this point forward is honestly to breathe and prioritize. There are many things we want to change and we're not happy with. I feel this way. If you were to ask me to make a list, I could probably give you 50 things, right, if I thought about it that I want changed about my school, son's school experience, my children. You need to decide what's truly important and prioritize. Let the little things go. If your kid’s coming home without their water bottle for the 10th day in a row, it is extraordinarily frustrating, but I don't want to use an email to the teacher on it. Instead, what I'll do at pick up is casually mention like, “Oh, our water bottles are missing. If you happen to see them,” right? Instead of an email, they have the answer, but save those emails for the important things like if you don't think their work’s being modified or something like that and believe me when I tell you I have bought so many water bottles, so I get how frustrating that is, but I want to save those emails for my priorities, so I try to prioritize.

Getting things in place every year is very hard, and I know if you're listening, you understand exactly what I mean. We don't have to tell you. And that's for kids, for staff, and for parents, so, Lisa, thank you for breaking down so many issues that we're navigating, and thank you for continuing to encourage us to collaborate, communicate, prioritize, and act, and just remember, I know I said this earlier, and Lisa said this in about 50 different ways, but if you keep hearing what your kid can't do or that it's never been done like this, or complaints that they can't keep up, you can immediately ask what supports need to be in place so they can be successful. The answer is not that they don't belong. The Undivided virtual platform breaks down all of the info that we discussed today. It lays out how you can tackle each goal step by step. You can create a customized roadmap so you don't have to guess what's coming next, which I know is one of the really hard things. What's next? What should I be doing? Plus, you get to join office hours every week and talk to experts like Lisa and ask your questions directly. Stay connected. Join our parents only Facebook group and follow us on Instagram, Twitter, YouTube and LinkedIn. Thanks 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.