Show Notes

(Transcription at the bottom!)

All Ears at Child’s Voice: A Hearing Loss Podcast is officially back for season two. In the first episode of season two, Tatum and Jessica interviewed Andrea Marwah about parents’ and children’s rights in the United States’ public education system.

Andrea works for the Illinois School for the Deaf Outreach Services as an Advocacy/IDEA Specialist and is president of the Illinois Hands and Voices chapter. She has a long history with Child’s Voice as her own daughter, who has hearing loss, attended the preschool program at Child’s Voice. She additionally hosts a biannual parent advocacy training at Child’s Voice.

Tune into the episode to learn…

• What the Individuals with Disabilities Education Act is & how it applies to children with hearing loss.
• What an IEP is and what happens at an IEP meeting.
• How best to advocate for your child’s needs by working with your child’s IEP team.
• What to do when your IEP meeting does not go as hoped.
• When to and how to prepare your child to begin participating in their own IEP.
• And more.

Throughout the episode, Andrea also shared several resources on this topic:

• The book, Wrightslaw: Special Education Law, 2nd Edition by Peter W. D. Wright & Pamela Darr Wright, which is a great, in-depth resource on understanding IDEA.
• The Illinois School for the Deaf Outreach Program website and Facebook page where you can find information on upcoming advocacy trainings.
• And the IL State Board of Education website where you can find a blank copy of the state-recommended IEP document (you can find that here)

If you are in the Chicagoland area & are interested in attending a parent advocacy training session with Andrea, Child’s Voice is hosting two upcoming trainings at our Wood Dale, IL location on Tuesday, April 9, 2019 and Saturday, April 13, 2019.  To learn more and/or register for a training session, go here.

Where to find Andrea: 

•  marwah@illinois.gov
• And her work phone, (331)-702-8944

 

 

 

Show Transcript

Tatum: Welcome to All Ears at Child’s Voice, a podcast discussing all things hearing loss. We aim to connect parents of children with hearing loss with the professionals who serve them. We’re your hosts. I’m Tatum Fritz

Jessica: And I’m Jessica Brock. Welcome back to All Ears at Child’s Voice. We hope our winter hiatus has given you a chance to catch up on all of season one’s episodes and we hope you’re excited for season two.

Tatum: Yes, we’re so excited to be back for season two. We have a new lineup of excellent guests and today we’ll be kicking off the season by talking about something that parents of children with hearing loss who are turning three or also parents who have kids who are over the age of three are familiar with and that’s the public education school system and parents’ rights and we are so excited to have today’s guest on the show with us to discuss this. Welcome Andrea Marwah.

Andrea: Thank you. It’s great to be here.

Tatum: Andrea Marwah is from the Illinois School for the Deaf Outreach and she is also president of Illinois Hands and Voices and a huge source of knowledge and the public education system, parents’ rights and IEPs. We first met Andrea through her parent advocacy training that she holds at Child’s Voice twice a year, but her, her relationship with our program goes back even further. Would you like to share some about how you became involved with Child’s Voice and with Hands and Voices?

Andrea: Sure, absolutely. Um, the reason that I do what I do every day is uh, because of my now 17-year-old daughter Samantha, who attended Child’s Voice school from the age of two until she mainstreamed into first grade in 2008.

Jessica: How did you get involved with Hands and Voices?

Andrea: So, um, Illinois Hands and Voices is a 501c3 nonprofit, um, family organization. So we support families regardless of what method, modality they utilize with their child. If their child is deaf or hard-of-hearing, they are welcome into our family. Um, and I liked the idea that I didn’t want to compartmentalize my child into one specific area. I wanted her to have exposure to all different things that are deaf, hard-of-hearing related so that she could get an understanding of the fact that, you know, there might be deaf individuals who do not use spoken language, but at the end of the day they’re still deaf just like her. So it has a really well-rounded flavor to it. And that’s what drew me to it in the first place. And it’s just uh, in the last eight years has been quite a journey.

Tatum: before we go further, do you want to tell us a little bit about your role at Illinois School for the Deaf, the Outreach program?

Andrea: Sure. Uh, so for the Illinois School for the Deaf, um, Outreach, we have a residential program in Jacksonville, which is by Springfield. Um, and that houses children, they stay the week and they go through their deaf education program there. The school realized that, you know, they still needed to serve all the other children in Illinois who were deaf and hard-of-hearing. So they started an outreach program. I went and presented with them a few times under Hands and Voices and they seeked me out and asked me to come to be that voice of the parent who also has that background in the legal system. So I provide training statewide, so any organization can seek me out for a training. Um, and I also do one-on-one consultation. So I’m a lay advocate. My ability to serve families is behind the scenes at this point. Um, but I can ready them for the IEP process.

Tatum: Yeah,

Jessica: She does such a good job of it. Tatum and I have both benefited from hearing Andrea talk and we’re so excited to have her talk to all of you guys because her wealth of knowledge is incredible, so we’re very lucky to have her.

Tatum: Yeah. Even having that background on the education system from grad school, your, your program was still like so helpful as a professional too.

Andrea                 Yes. Thank you.

 

Jessica: Before we get started talking about the IEP process, we’re going to start on a little bit of a lighter note by um asking you Andrea if you have any stories from the past week. So we like asking our guests every week to share a story. It could be something cute or something funny, something heartwarming. Does anything come to mind?

Andrea: Um, yeah, so with it being the holiday season and we all tend to be getting several deliveries of mail from the USPS or the UPS trucks come by, et cetera. Um, when my daughter Samantha was maybe six years old and she was learning how to read and the brown UPS truck comes around and every day she would be like, “Mom, it’s the ups truck. It’s the ups truck.” So to this day, the Marwah households still refers to those brown vans as the “ups” truck.

All: Laughter

Tatum: That’s cute.

Tatum: So why don’t we jump into our main discussion then? Um, so as we talked about earlier, we’re going to be talking about your rights in the education system. So first, why don’t we go over why it’s important to know your rights as a parent of a child with hearing loss or just any child in general. So Andrea, why do you think this matters?

Andrea: I think what happens more often than not sadly is that, you know, families have a child that has some kind of special need and they enter the school system and they’re told that they have this meeting. Um, so the parent shows up unprepared, unknowing that they have a legal place at that table to be able to advocate for their child and help the team determine, you know, what special things they’re going to do for that child. I think, um, if families understood that there’s a legal bind out there that can help them, they would do much better. I think as a parent who has a child who is profoundly deaf, it is my job to advocate for her until she’s capable to advocate for herself. And I think that families need to do that. They need to be that voice of their child that doesn’t quite have a voice yet.

Jessica: And it’s, it can be, I feel like a very overwhelming process when you don’t know what’s happening. But if you go in prepared and you know what your rights are when you’re sitting at that table, it’s still overwhelming, but you have some sort of like agency of control, which is empowering and ultimately going to help your child down the road, um, advocate for herself or himself eventually.

Andrea: For sure. Yeah.

Jessica: Um, okay, so we’re going to talk about the meeting and the, all of the ins and outs of that. But first let’s go legal big picture. So parents’ rights and educational policy are outlined in a law called IDEA. Do you want to talk a little bit about that?

Andrea: Right. So one of the laws that can protect a child with disabilities, um, is called IDEA or the Individuals with Disabilities Education Act. This act kind of stemmed from basically rights of individuals who were considered minorities in the US in the 70s. And when segregation became apparent and families were no longer willing to have a lesser education system because their children were of a different color or race. All of a sudden the parents who had children with special needs who were institutionalized, said, “Wait a minute, if they can do this, why can’t we?” So they started this law. And what the Individuals with Disabilities Education Act does for families is it provides their child with an appropriate education in a public setting that works directly on that child’s unique needs. The purpose of it is to provide that child the education they need for independent living, employment, or further education. They do not deserve to have a lesser education because they have a disability. So how can we make their education well rounded enough so that they get the same education as those who do not have a disability at all?

Andrea: It’s important to understand that, um, IDEA is a federal law. So a state takes a federal law into their state and they enact it as a law. They then get federal funding to provide the services within that law. Your state board of education is required to follow IDEA. So it’s very important that parents understand what the principles of IDEA are.

Jessica: okay. And then so big picture law and now let’s go to the part that parents start hearing a lot about around the age of two and a half. So they start hearing this term IEP, IEP meeting. Um, it seems sort of ominous and very ambiguous. What is an IEP and what is the meeting? I guess two different questions.

Andrea: Okay. Um, so under IDEA, a child with a disability alone is, does not automatically receive what they call an IEP, but if the IEP team, which includes a regular education teacher, special education teachers, someone from your local education agency,  anyone that has a specific knowledge on your child as well as the parent. And it’s important to understand that parents are included in this IEP team. This team determines from the information collected whether a child, one has a disability and two, if that disability is impacting their education to the point where they would need an IEP. With children who are deaf and hard-of-hearing, I strongly urge families to insist on IEPs until their child is able to advocate for themselves. Um, and we can go into that in more detail later.

Andrea: So it’s important to go into it thinking I’m going to be writing the IEP at this IEP meeting. So the, the team members, they all joined together. They determine the needs of the child. They work as a team to determine, “okay, yup, here are the issues that this child has. How can we educate this child? What accommodations, modifications do they need, um, as well as goals.” So why would they make a goal? If a child has any delay or any need in a specific area, then goals are written to close a gap on whatever that area is. So for instance, for our children, oftentimes it’s language development, language acquisition. So each child, if they have say, a year’s worth of learning that they have to learn. So they’re age five, but their language level is age four. They have that one year of information that they need to learn. So it’s important that we understand that the IEP needs to be drawn up to incorporate that, as well as the year of learning that they’re expected to learn just because they’re in the school setting.

Jessica: What does the term IEP stand for? Like what are those letters, what do they mean?

Andrea: Okay, so an IEP is an individual education program and so it is a legal document that is um drawn up for this specific child in mind and it will educate them according to that legal document.

Jessica: What is included in that legal document?

Andrea: Okay. So there are many parts to an IEP document stemming from just general information about the student who the student is, their age, academic level, et cetera.

Andrea: There are sections on linguistics and cultural needs, which is a new section, um, introduced in 2015 where we have to look at a child and their specific language so that the child has the ability to have direct communication with their teachers and peers. There are goals sections, there’s also transition sections which they’ll get to. Those are always included in the document but not used until the child turns 14 and a half here in the state of Illinois. And  then there is the implementation and when the IEP starts. So it always has a starting date as well.

Tatum: Perfect.

Jessica: It’s a very long document and it’s often not like shown to families in the meeting, but the meeting is drawing up that legal document. So whoever’s running the meeting is going through each of those sections, filling it out often not in front of the parents.

Andrea: Right.

Tatum: It could be confusing.

Andrea: Right.

Jessica: Um, but the parent and everyone at the table has input to what goes into those different sections. Is that correct?

Andrea: That’s correct. And, and you’re right to say it’s a long document. It’s 26 pages blank. So it is a really long document. I always urge families who I’m working with to go to the Illinois State Board of Education, which is ISBE.net. Go to that website. And under the Special Education tab, they can get a copy of the state-recommended IEP and all districts can use whatever format they want, but all of the components that are included in that state recommended one have to be included. So if a parent looks at that and they see what’s in there, it’s going to be in their local agency’s IEP document as well.

Jessica: Perfect. I like that idea a lot. We can link that to our show notes too.

Tatum: Yeah, I like that idea of– do you recommend that parents can like follow along throughout the meeting because I agree with Jessica, sometimes it’s confusing…when they’re on their computers typing everything up and you’re like, what’s what’s going on?

Andrea: Right. I, I always urge parents to ask for a drafted IEP that way they get the drafted IEP prior to the meeting so they can look through and see everything that’s already filled out and then it’s not redundant information when they’re sitting at the table. It also helps to make sure that it’s accurate because sometimes you’ll look in, I mean, I’ve had families that have sent it to me and halfway through it starts talking about a different student because they’re using the same form…

Tatum: Oh no.

Andrea: So it’s important to get that down. Drafted IEPs are purely legal, legal. It’s in their rights to give that to you and you actually want it because, you know, the IEP meeting is going to last hours and hours if we aren’t just there to make that final decision.

Jessica: So I think what happens a lot of times, at least in the meetings that I’ve sat in, is that so prior to the meeting, the child is evaluated by various professionals and all those professionals write reports based on whatever they saw the child do in that evaluation. And then professionals will like read their report out loud to the parent. First of all, the parent knows their kid better than the professionals so the parents should know all of these things anyways. But also, um, a lot of our parents just like ask for the report and then you don’t have to go through line by line through the report, making sure it’s all accurate. You can kind of proofread it beforehand and then it’s just like one giant step of the IEP that could be condensed at least.

Tatum: Yeah, I agree with that cause I feel like by the end– decision-making happens towards the end and then already then you’re like fatigued like mentally, emotionally, oftentimes hungry. It’s a long day. So we defined a little bit more on what an IEP is, who are the players at an IEP meeting, who is involved?

Andrea: Okay. Uh, so parents are involved and parents are not just invited to listen to the decisions that are being made. They’re actually active participants and it’s important to understand that. In fact, if you look at the IDEA legal text, parents are listed first. So it’s important to understand that, you know, parents are advocating for their child until the child is able to advocate for themselves. There should be someone from the local education agency, preferably a person that has the authority to say yes to things that might not be typical. Any special ed or any person with a specific knowledge in your child that could share information that’s important. Say they’re coming from Child’s Voice school, someone representing child’s voice school should certainly be there, so that they can answer questions because who knows them best educationally, wherever they’re coming from. And there should always be a general ed teacher there. The general ed teachers should be the same grade level that the child will be entering. Oftentimes, I always hear parents say, why is the gym teacher there? They are a licensed educator. Um, but I would as a parent, if that was a concern for me, I would seek out an actual third grade teacher if my child’s in third grade or whatnot. The reason for that is that person’s going to be able to tell the team what’s expected of that child in that academic year. Um, so basically those are the big players. And then like I said, anyone with expertise in the child that can share information. If you feel that your child is ready and there will come a time when your child will be ready to attend the IEP meetings, then of course the child as well. And that’s going to be up to the family when that child is ready to attend those meetings. But by the age of 14 and a half, they have to be there. Um, they pretty much run their IEP meetings by then. So having that as a longterm goal and understanding, it’s good to give them some exposure.

Jessica: Tatum and I are in Early Intervention almost exclusively. So sometimes we as Early Intervention therapists will attend the child’s first IEP meeting when they’re turning three and moving into the school district. It’s just support for parents. Um, and also, uh, another person who can chime in on accuracy of evaluations and goals and things like that because often times, um, we know the child’s language and listening skills a lot better than an evaluator who saw them for an hour in a play setting. To add onto that, um, can parents invite whoever they want to come to the IEP meeting as well?

Andrea: Yes. By law a parent, is allowed to invite whoever they want to invite. The courtesy would be to let the school know who is going to come. I always suggest not attending alone. Sometimes both parents aren’t able to make it. Then bring someone else, a grandparent, a sister, somebody else who can support them. A lot of people ask, should I take an advocate? And my first response would be not unless you need to. But that is another person that they can invite. It’s just, I think that families should be the advocate if they can be, you know. Um, but yes, they are able to invite anyone. They should show the same courtesy. If you get an invitation, you’ll get an invitation for your IEP meeting, and on that is the list of people that are coming. They have provided you with the information of who’s going to be there. It’s kind of you to let them know too. You don’t want to start a meeting out with defenses up because you brought somebody along who’s wearing a suit and they’re going to automatically think it’s an attorney. So, um, yeah, you can just let them know.

Jessica: Yeah, yeah. And too just logistically like they’re often in a conference room with a set number of chairs. I’ve walked into meetings before and they’re like, oh, we have to run and get a chair. And it just adds stress to the…

Andrea: Right

Jessica: …to the whole situation. So they should know who you’re bringing for sure. It’s not legal that you, it’s not required, but it’s,

Andrea: it’s common courtesy.

Jessica: It’s common courtesy.

Tatum: Maybe like let’s go over what exactly happens at an IEP meeting. kind of step by step?

Andrea: Okay. First step after introductions are made, after reports are read, then eligibility is determined. And like I mentioned earlier, just because a child has a disability does not mean that they are eligible. So they are going to take the information, the evaluations that have been done on the child to determine is their education impacted due to this disability? And if it is, then they would move forward to writing up an IEP. If it is not and the team agrees that it is not, then they would move on to a different type of education, uh, eligibility plan, which is a 504, which I’m sure it could be its own session.

J & T: laughter

Andrea: Once eligibility is determined, then they will seek out, you know, what those goals are going to be. And then from those goals, the last thing they should be doing is determining placement. Number one rule of thumb when considering placement is it should never be thought of as a building. If you go to a school district and they say, “Oh, all of our deaf and hard-of-hearing children, they go to this school and you know, it’s a great program and that’s where they go.” If that is the way that they’re running things, they might be missing the individual component of the IEP. So that placement should be the very last thing that you’re doing.

Jessica: Let’s talk a little bit more about the individualized aspect of this. Because I liked what you said, like not all children receive… A lot of times families will ask like how many speech minutes do you kids get? No, no, no, no, no. It is completely individualized. So why don’t you talk about that?

Andrea: Right. So that’s the reason that they call it Individual Education Plan is because if we start lumping all of our kids into the same program, then we’re institutionalizing them again. So we need to look at the specific needs of that child. You can have two children with the exact same audiogram, exact same hearing equipment, exact same reading level. But when it comes down to evaluations, one child may be missing a lot more in a certain area than the other. If we were to place them both in the same place, then one kid’s either not getting enough support or getting too much support. So we need to look at the individual needs of every child. That is the only way to actually make sure we’re implementing them appropriately.

Jessica: So the goals, the reports are individualized, the goals are individualized, the accommodations. All of it from start to beginning is dependent on how that child is doing at that moment and whatever placement.

Andrea: Correct. Correct. And that’s why it’s important to have a, an IEP team that has a knowledge in deaf education. So you have to have some people on that team that can say, well, these are things that we can utilize. It seems like with the information that we’ve been provided by this child, that they could utilize an FM system or a preferential seating or whatever those accommodations might be. And then the therapists who have done the evaluations, there’ll be the ones to determine, okay, here we have a six-month gap that we need to close. Here’s how we can close that gap by doing these specific goals, working on them to an end so that they close that gap. We have to remember that our kids, not only have their, their delays to close, but they also have the year of learning that is required by every other student in that school. So it’s harder for our kids. So without those individual plans, how are they going to close that gap? We can’t just throw them into a classroom and expect them to do fine because there’s too much work that needs to be done before that will happen.

Tatum: Oftentimes, I know you mentioned a little bit that the placement comes at the end. I think from Jessica’s and my perspective, that’s just because we’re helping kids transition out of Early Intervention and into preschool. The kids that we’re working with, they’ve never been to any placement yet. So oftentimes that’s the, like that’s on our parents’ minds. That’s like the main thing that they’re thinking going into the IEP. So, do parents get to decide where their kids get to go to school? How, I know you’re mentioning that it’s based on the individual needs, how do parents’ opinions like factor into placement?

Andrea: Yeah, that’s a really good question. And those are a lot of the questions that I get as well at my desk. So when you do the transition meeting and they’re just bringing the kid in, you know, they’re taking the information that you received. Now they’re going to decide are we going to do more assessments or are we not. At that point in time you should be discussing with the school what options they typically have for kids who are deaf and hard-of-hearing. Do they have a deaf or hard-of-hearing program, a cooperative program? Do they have a preschool program where they could be placed? Also, if a parent is already in a private placement, they would want to have the school view that program. So basically you want to put it on the table, what are my placement options? Maybe there’s three, maybe there’s six, maybe there’s two. But parents also need to express their desires as well at that point. The outcome of that should be that parents will observe and gain understanding of the programs that this school has. And if the parent has a private placement, they seek for the, for the school district to send someone to observe that program, then they would come back together with the information that they’ve gained on the placement options and decide as a team based on the evaluations that were done and the needs of the child which placement option would be most suited for that child. So in answer to your question, do parents get to say, not solely, they need to work as a team to develop that. A parent can’t walk into a meeting and say, “I want my child to go to this private placement. That’s it. That’s the best for them. That’s where I wanted to go.” They need to have solid information and reasons why, you know, they have to say, you know, I viewed the three programs that you have, although they’re good for certain students, we feel our student could be better served here and here are our reasons why. They do have a say but they’re not the sole person that has a say in that.

Jessica: So we just talked about placement. Parents are a contributor to the placement decision but not the sole decision maker. Do we want to start talking about least restrictive environment next?

Tatum: Yeah, maybe like just the kind of language that goes into placement, like least restrictive environment, most appropriate education, those kinds of terms that are harder I think for parents to understand.

Andrea: So an important thing to understand is Least Restrictive Environment. So the definition of Least Restrictive Environment is to educate children with disabilities with children who do not have disabilities in their local school. I mean, that’s one of the biggest premises of it. To be educated with their peers, with their siblings, with their neighborhood friends in that school. Least restrictive environment typically is great. It gets all of our kids in, nobody’s, you know, segregated out into a self contained classroom, which is sometimes a big one that they offer for deaf and hard-of-hearing kids. They’ll say, well we have a self contained classroom. If a family and a professional go and observe a self contained classroom, we will find more often than not that that is usually not a suitable environment for a listening-and-spoken-language child for sure. Here’s where the least restrictive environment is a little bit of a switch for children who are deaf and hard-of-hearing. It’s important to make sure that children have the ability to have direct communication with teachers and peers. So if you have a child who is using American Sign Language for instance, and we followed the traditional definition of least restrictive environment, then we’ll put them in their local neighborhood school and we would provide them with the accommodation of an interpreter. What’s missing there is direct communication. So in that aspect it would be considered the most restrictive environment. So we need to make sure we understand the language needs of that child and we don’t want to put them into a position where they can’t have that direct communication. With our children leaving Early Intervention, a high majority of them are ready to go. They have good language. They are capable of going into a early childhood program with some accommodations and with some pullout time or whatnot. If a child is significantly delayed, however, in language, that environment may not be conducive for the amount of work that needs to be done. Does that make sense? So we don’t want to put a child that is three into a three-year-old language classroom when that child’s language is one year old, then that again becomes a very restrictive environment. So we need to take those things into consideration. And maybe for a time it’s more important to put that child in either a blended classroom or a classroom that’s very focused on whatever their method of modality is so that they can catch up. And then, yeah, eventually let’s get them mainstreamed.

Jessica: Yeah. I like what you said. Like there’s this traditional idea of least restrictive environment, which is, I mean that term is a legal term. It comes from the…from IDEA. Uh, but the traditional interpretation of that term is that the kids go into their mainstream classroom with all of their local peers. But for a lot of our kids, it’s more restrictive to be in that environment because they can’t communicate with them yet.

Andrea: Right.

Jessica: So, I think it’s important that parents that and um, and understand that there are different interpretations of what that means and to understand that it’s not the traditional definition of it or the traditional interpretation of it is not always appropriate.

Multiple: Laughter

Andrea: Right. And that new section from 2015 that was entered in that linguistics, the cultural section really helped to open up the line of communication with the IEP team about this, that, you know, we’re talking linguistics and cultural information and deaf, hard-of-hearing children are specifically mentioned.

Jessica: Right.

Andrea: So obviously we really need to take a good look at is this environment going to be okay for them or is it going to go way over their head because they can’t communicate. If they can’t sit in story time and understand what’s being said with the teacher, then they’re not benefiting from that program. They’re not ready for that program yet. So that needs to be understood as well.

Jessica: Tatum, do you want to ask about, uh, like appropriate versus best?

Tatum: Yeah. Um, so In addition to Least Restrictive Environment, another, another term that comes up a lot in IEP meetings is the most appropriate education. And oftentimes I feel like this is something that our parents struggle to understand. And it’s also just difficult to explain. Oftentimes parents want the best education for their child. Is this something that legally has to be provided?

Andrea: Right? So the term best you don’t find that in the IDEA legal text at all. I always talk about it in terms of baseball. if you’re sending all the kids out to the outfield and your child doesn’t have a mitt, but the other kids do, then their IEP gives them a mitt. It doesn’t give them a golden glove. It gives them a mitt. If a parent wants a golden glove, then they can pay extra and they can do outside stuff to give that kid that golden glove, but they, it’s appropriate. They need to, I mean, school districts and teachers I hope have the best interest of that student in hand and they want them to catch up to their same-age peers and they want them to be able to be educated with those same-age peers. That doesn’t require a term best, but let’s be real, right? What do parents want for their kids? They want what’s best. They just need to understand the intricacies of best and appropriate when it comes to funds that a school has to spend. So when we’re asking for, you know, a child who’s like a superstar language performer, we’re asking the school to pay for them to go to a private placement, that might be difficult. If we can prove of the benefit of that, then that’s when it becomes easier.

Jessica: Yeah and I think that that just comes up a lot in the terminology that parents and professionals are using and I think parents just need to understand that, yeah, a district doesn’t have to provide…

Andrea: the Cadillac.

Jessica: …the Cadillac when the kid can ride a bike to school.

All: Laughter

Andrea: Exactly. And it’s hard and that is very, very hard.

Jessica: Yeah, it’s hard.

Andrea: Hard for parents to understand, you know? But parents just need to be able to differentiate it. We know as parents we want what is best for our child. We need to understand that there’s a line we can’t cross and if our child is able to go to that school, able to stay up with their peers, catch up to their peers, that’s appropriate. And that’s good. If we want them to do more, we can do that on the side. I mean that’s a parent’s prerogative to do that.

Andrea: I love that best.

Tatum: I like that. The baseball terminology with the golden mitt.

Andrea: Yeah. Well, it used to be “don’t ever say best in your IEP meeting,” but I think we’re realists, right?

Tatum: Yeah.

Andrea: We know that parents want is what is best. Just because they don’t say it, we still know that that’s what they want.

Jessica: So we understand best and appropriate, a school district only has to provide what’s appropriate. What if a parent doesn’t think that the school district is providing an appropriate education for their child? What are sort of the various options? That’s a giant question. But say we get to the end of a meeting and the district has laid out what they’re willing to provide. The parent thinks that’s not appropriate for my child. They say that the district still says this is it. What’s the parent’s option?

Andrea: Right. My first piece of advice would be to say, okay, we’d like to take this information home and digest it. You know, have parents go home. You know, it’s almost that coaching rule of give me 24 hours before you complain about what happened on the field today. You know go home and digest it. Sometimes if they come back down to earth, they can think, you know, maybe this’ll work. Being willing to try and work it out is the number one step. So if they get through 48 hours and they’re like, “Yep, this isn’t going to work,” then I would recommend calling an additional IEP meeting, coming back with more information as to why they feel it doesn’t work. Obviously they haven’t convinced the team. Again, they go back, they give this convincing information, it doesn’t work. Then there’s state processes that can be put into place and the first step would be a state, um, funded and provided mediation. And so what that is, is there’s forms that they would have to fill out seeking a mediation, between the school and themselves. The school would get a copy of this letter. The family would be sending it to the state board of Ed. State board of Ed. would provide a mediator and oftentimes it’s pretty successful. Sometimes I think what we need to understand is that parents, their thought of what is appropriate isn’t, and sometimes I like to talk with those families because I can say, hey, give it three months. If nothing is happening or it’s through your child is failing or something is going amiss, then you call another IEP meeting, but mediation can work, but it’s the parents that are, they’re not on the right page. The ones that want the Cadillac version of the education, those are the ones that even mediation isn’t going to work for them. So sometimes those families may just choose to place their child privately and cover those expenses by themselves, you know. Um, but if it is a situation where the parent is actually right and the placement that they are offering is not optimal, is not appropriate, then that mediation oftentimes will work.

Jessica: Perfect. That was a nice summary of sort of a complex series of events that could happen.

Tatum: Yeah

Jessica: I think one of the things is a really good piece of advice is just to take some time to think about it. Um, you don’t have to sign a document. If you don’t, uh, agree with it or think that you need time to think about it, you can pause the meeting at any point if you need time to think about it.

Andrea: Right

Jessica: So if you’re feeling overwhelmed, you can always take a step back and say, I need some time to think. Let’s water break for a day or two.

Andrea: And you’ve just brought something up there. Um, parents are afraid to sign their IEPs…here… with the advent of the IDEA 2004 when it was re, reenacted, um, parents don’t have to sign an IEP for to go into…

Tatum: Oh…

Andrea: into law. So there is no real signature required anymore. The only thing that they sign is if they’re waiving the 10 days. So they love everything that’s being said. They’re willing, they’re, they’re signing the dotted line. But if a parent does not sign and does not let them know…

Tatum: oh yeah

Andrea: …the legal process, there’s a legal process to let them know that they’re, they do not accept, then it goes into effect.

Jessica: Okay.

Tatum: After 10 days right…

Andrea: The reason for that is because there are many parents who don’t even come to the IEP meeting. They want to make sure that these children get a fair, fair education.

Jessica: That makes sense. Yeah. So, um, okay, so talk about the 10 days. Tell us what those 10 days are. What happens in those 10 days?

Andrea: Okay. And I’m not going to speak out, uh, out of turn. it’s either 10 calendar days, 10 business days, whatever… We can look at the law for that. So basically what it states is that a parent has these 10 days, I think it’s 10 school days…

Jessica: I think so too.

Andrea: But they have the 10 days to say, I do not accept this. And in turn I am seeking state mediation or in turn I am filing a due process complaint, which is basically saying, I am taking you to court because I do not agree with you. Okay. Um, so those 10 days, it’s important for families to understand that they do need to act within those 10 days. One of the most important things to, to understand too is, so the 10 days go by, they start the IEP process and parents are still not happy, then call another IEP meeting.

Jessica: Right.

Andrea: An IEP lasts by law for one year, but it can be altered as many times as necessary within that year. An IEP meeting can be called monthly if necessary. Wouldn’t recommend it because the school would not really like you, but it is certainly something that it’s a living document so it can be changed and altered as needed because, you know, we’re making our best, best decisions based on the information provided. You know, some of these kids, they may have a lot more regression than we anticipate by the time they start the program, then we need to, we need to change things up and that’s okay.

Jessica: That’s an important piece for sure. You can always call another meeting.

Andrea: Sure.

Andrea: And certain things can actually, like alterations of the IEP can be made without gathering the IEP team together. For instance, you know, we decided that we didn’t want to utilize an FM system, but I really think that they could use it. You don’t need to call an IEP meeting for that. Basically a document would be drawn up. It’d be sent home, the parents would sign it and it would then be incorporated into the IEP. So, you know, you don’t always have to get the stars aligned.

Jessica: Tatum, I think it might be helpful to ask, like oftentimes I feel like parents go in thinking it’s like parents versus school district. Let’s like talk a little bit about the dangers of that assumption.

Andrea: Yeah, definitely. If you read IDEA law which if you’re a legal geek like me, you will, you understand that you’re bringing experts to the table that have an expertise in the child. A parent is an expertise in specifically the upbringing of that child and how they react at home and, and what a long, busy day can be for them, et cetera. That is information that needs to be incorporated into a team. If a family goes in thinking the school is against me, it just starts everything off in a bad way. So it’s important for families to understand you’re part of a team and if you go in thinking, I’m part of the team, I’m not just invited here as a family or they’re out to get me, go in, let them have their expertise. Let them tell you what their thoughts are. If you don’t like it, be a grown up and say, I’m not comfortable with that. Can you explain? You know why you think this would happen? Or you know, a lot of families go in and they’re ready. They’re going to walk in there with both guns blazing and they’re going to jump up on that table and they’re going to say, it’s my way or the highway. All that does is set the family up for a fight all the time. Your IEP will follow you, your team, information will go to the next team. So go in there and actively say, “Hey, I want to work as a team. I want to help at home too. I want you guys to know that I’m here because I want to see this team make a successful outcome for my child.” Most districts, the majority of them have your child’s best interest at heart. They really, really do. They’re not against you. They want to educate them. They don’t want to bubble wrap them either. The reality is there’s, t there, there’s going to be some challenges. How can we make that as simple as possible or as streamlined as possible?

Tatum: Yeah, and I feel like we talk to parents a lot too about how they’re, they’re building a long relationship with their school district that’s going to last more than just this one meeting. Even if,

Andrea: Right.

Tatum: A lot of our kids end up getting placed at Child’s Voice. Even when they’re having that private placement, their school, they still have that ongoing relationship with their school district and eventually you do want their child to return into their school district too.

Andrea: I always tell parents in my trainings, I always think of it this way, schools all have cameras. So when you buzz to get in, they see you. You don’t want to be that parent that they’re making an all school announcement that “the parent has entered the building.”

Tatum: Laughter

Andrea: That’s what happens. You want to be that parent that, “oh, they’re here. We love it when you guys come in” because that makes it so much easier to get things you need for your kid if you go in there with that open mind and sometimes, you know, let the experts be the experts in the area that they’re in and you’re not always going to agree with all of them. So in those cases agree to disagree on that, move on to the next thing. You know, it’s not always easy. Personalities are tough sometimes.

Jessica: And it’s not a one-time negotiation that you, you know, they never have to see those people again.

Andrea: Right.

Jessica: You’ll have to see them again and you have to continue working with them. And so, um, having it be, um, having things be on good terms is important.

Andrea: For sure. And seek out information, you know, find out why, you know, help me understand, you know, I’m a parent in the scheme of things. You guys are the professionals in this situation. Can you help me understand? Because this is just, I just don’t understand this part of it. I always tell families to have a list of things that you want to accomplish in your IEP meeting. Because what happens usually is they have their pinpoint, that one thing that they won’t leave that meeting without. And what’ll happen often times is they’ll, they’ll grant that one thing the parents are like having, you know, they’re doing a hula dance. They’re so excited that they forget about the other five things that are on their lists. So I always tell them to write down four or five things that you want to accomplish in the meeting and make sure that you check them off before you leave the meeting. Because it’s great when you get everything that you want, but it’s kind of, you know, “oh I got a call up cause I forgot. I wanted to ask for this too.” Right. So, um, important to be prepared, you know, be ready for the meeting. Do review all of the documents prior to, ask questions about those documents prior to. I always think of the actual physical IEP meeting, you should just be buttoning things up. There should be no big surprises. If you want your child placed privately, you should have expressed that before that day. this is a place where my child is currently, they’re doing really great. I’d love for you to go and see that program. You know, if they don’t go to see that there’s a good, there’s good one. What if the school district doesn’t go to see that program? Well. Then when you’re sitting down at the table and you guys are talking about placement and they say, “nope, we won’t do that program,” you can actually say, “well I don’t understand how we can make that decision when no one else from the team has even observed it. I think that maybe we need to call this off and have someone go observe it because we’re saying no to something. It would be like me not viewing all your programs, which I did and saying, I don’t want your program.” You know it’s both ways. So those are some of the tougher ones as well. Um, but trying not to get angry. Pete Wright from the Wright’s Law series, which he does an amazing job describing how to advocate for your child says, you know, take all of those frustrating things and those things that make you angry and put them in a backpack and wear that backpack and use that backpack to push you forward to get what your child needs. Don’t make yourself angry and that screaming parent at the meeting, you don’t get anywhere that way.

Tatum: Yeah. I like that. Now that you mentioned the Wright’s Law book, we should link that in our show notes too. Yeah, I love that book.

Jessica: You also said you’re a nerd and you’ve read IDEA. Tatum and I have also read IDEA one of professors in grad school. Like did she have, did she test us on it?

Tatum: I don’t remember, but I’m, I kinda like the law too. I could, this is like never going to happen, but I could see like going to school for like disability law or something if I…I find it very interesting.

Andrea: Yeah, if I wasn’t turning 50 next year, I’d do the same thing. I’m like I am not cut out for school.

Jessica: Yeah, totally. It was good though because it helps you understand what you’re doing and why you’re doing it and what school districts are obligated to do and your role in it as a parent or as a professional also.

Andrea:  Well, and that’s the thing, typically a family who takes my six-hour seminar, when they go to sit down at an IEP team table, chances are they will know more about IDEA than any general education teacher sitting at the table. Most special ed teachers have had some kind of background in it, but how long ago was that.

Tatum: Yeah.

Andrea: So usually, they know quite a bit and if they use that information in a positive manner, they will get the services that their child truly, requires.

Tatum: Yeah, yeah, I definitely agree with that because even I think I went to your, um, one of the advocacy days that you did at Child’s Voice my first year and I was just out of grad school and I, it was a huge review for me and there’s a lot more, I dunno, there’s just your programs are so helpful.

Andrea: Yeah. So that’s why I like when, when I have sessions with both parents and professionals because it shows the professionals, wait a minute, she’s not telling the parents to come and beat up on us, you know, because that’s not what this is about. It’s about how do you play as a team. Because at the end of the day that that child is the one who is going to reap the consequences. So if you behave, child’s going to reap the benefit. If you don’t, the child is going to be the one that does without. So, you know, keeping that in check.

Tatum: Andrea, is there anything in general that parents should know about IEP meetings? Anything else that you would like to add before we kind of move on?

Andrea: Just, just to kind of sum it up. Uh, it’s important to understand that you should be prepared for them, that they are important. You know, you’re, you’re writing up a legal document when you’re sitting at those IEP meetings. So be on time, be prepared, be ready to share, um, have information, don’t have brand new information coming to the table that day. You know, I’ve already had that communication beforehand. IEPs, the life of an IEP is a year typically. But if you say to a district, I’m not 100% comfortable with the, with the plan that we’ve designed today, but I’m willing to to put it out there for three months, then that IEP would be three months and then you would go back. It may show a year’s worth of time. But in the notes section of the IEP it would say we’re reconnecting in three months. So understanding that. Also very important when you leave your IEP meeting and you go home, not that day, but the next day, make sure you read through it. You want to find tooth comb it because you want to make sure that everything is very specific. Always look at the document as though it is being written to a stranger that, so if I come in for one day in your classroom, I can pick up that document and know exactly what’s supposed to happen with your student. So that’s important. because if something’s left out, it might be fine while the existing team is working with the child because they know it. But when a new team takes over, they’ll say that that’s not in there, I don’t know what you’re talking about. And then you have to start the whole process over again. So make sure that you do reread the whole thing, including um, accommodations and modifications and make sure that they’re specific.

Tatum: And then if something is left out or it needs to be corrected, how can a parent go about getting that done?

Andrea: You could simply email it to them and say, you know, I noted that X, Y, and Z was not included in the IEP. I’d like it included and then could you forward an updated copy? And they can do that. That can just be via an email. An email is a legally binding piece of information too. So anything that you do send an email should be incorporated in. If you sent it, consider it in unless they tell you otherwise.

Jessica: And keep all your emails and documents of everything.

Andrea: Right.

Jessica: Just as a general life tip.

Andrea: Oh, for sure.

Jessica: But when you’re drawing up a legal document related to your child’s education needs, you should have all the paperwork somewhere.

Andrea: For sure. We, we are with our, with our daughter being 17 now we often joke: Okay. So when the u-haul comes to pick up all of the documents that we’ve shared over the last 12 years, um, yeah, she could take it all with her, when she moves out.

All: Laughter.

Jessica: Okay. So your daughter is 17 so you’ve done the… she’s now involved in all of her meetings, correct?

Andrea: Yes, yeah.

Jessica: Do you want to talk a little bit about either what that was like for you or just sort of in general, whatever you’re comfortable?

Andrea: Sure. It’s age 16 per IDEA, but in the state of Illinois we do it at 14 and a half. So basically the state board of Ed is saying when that kid is ready to transition to high school, you need to start the transition process. So within the IEP document, there are transition pages. In layman’s terms, what is this? It’s a four-year plan and that four-year plan is devised and developed in accordance with what your child’s next steps are going to be. So if they’re going to college, then you need to make sure that they are going to take all the right classes to get them into college. If they are going to go into a transitional living program, then you need to make sure that they are doing whatever classes they can be doing so that when they turn 18, they will go into a transitional living program, which is a whole other thing to open up. Um, but let’s just say that all of our kids are going to do amazing and they’re either going to work or they’re going to go to college. At that 14 and a half meeting the child is included. We all sit down at the table and we say, okay, so with, here are the results of the child’s assessments. They’re doing really well. They’re age appropriate, they’re grade level. They’re very capable of going to college or they’re very capable of getting a job. What is it that you see? And then the family says, well, we would like our child to go to a four-year university. Then the team decides as a team, okay let’s do their four-year plan. So these kids have like a glimpse into their future and it’s basically you’re doing their schedule for four years to make sure they get all their science or their math or their English and everything else. Um, as you progress through, so now that we’ve drawn that up, there’s her transition planning, each year that transition plan will be looked at again to make sure that, yup, that’s what we’re still going toward. And it allows the child to understand, wow, college is coming. What kind of accommodations or modifications might I need in college? So this year when my daughter was 17, we got the letter that said, next year your child does not have to invite you to the IEP meeting if they choose not to because they will now be a legal adult. That stuff happens so quickly. So it’s important to understand that that day is going to come. So that’s why preferably by sixth grade you need to start inviting that kiddo to that IEP meeting so they understand what’s going on. Because if you bring them right into the transition meeting, they were like, what is all this other stuff, you know?

Tatum: Yeah.

Andrea: I always tell families, um, very important, don’t hide your child’s disability, don’t candy coat your child’s disability. They need to understand it. They need to own it. They need to know, hey, I’m deaf. These are my limitations because I’m deaf. There’s not many of them if you do a good job with their kid, you know, but these are my limitations. You know, a child who doesn’t know their disability, that has an IEP, it’s, there’s a lot of it that’s lost on the child. And that’s unfortunate.

Tatum: And that kind of like, it makes me think of the self advocacy episode we did last season with one of our teachers, Anna Tess, who has hearing loss and she wears bilateral cochlear implants and she had to advocate for herself upon entering college. Um, and it sounds like this is a great way to help kids start advocating for themselves too. And it’s legally mandated. So.

Andrea: Absolutely. And one of the things that you’ll find, if a parent is a good strong advocate, children emulate their parents, they will become strong advocates. Me doing what I do for a living and having my daughter who’s a little more reserved, to see her blossom and now she is a proficient self-advocate is amazing. I never thought it would happen. I knew she knew what it was, but you know they’re going to go at their own time. But it’s good for parents to see that happen because they are going to go off to school and you are going to drop them off at their dorms someday. Can they do it on their own? We need to make sure that we’re working on that. So a lot of families, that’s a, That’s a good segue and I, you guys can include this if you want to or not. But you have a child who academically is doing phenomenally well. We should move them onto a 504, which is for accommodations only. And people can reach out to me if they have more questions on that. But oftentimes the Early Interventionists are doing such a phenomenal job that the, when the child enters into the early childhood program at the school, they’re like, they really don’t need anything. Well they do though because they have a pretty significant disability and if they are incapable of advocating for themselves, a 504 plan won’t work because no one is watching that 504 plan. So until the child is able to advocate for themselves a 504 really doesn’t work. So if the school wants to do that, then we’d better use an IEP to get them up to par to be able to self advocate. Then we can look at that 504. That’s what I typically will tell parents because self-advocacy, remember when we talked at the very beginning about academic need but that well-rounded, we need to look at their social-emotional too, self-advocacy is so important.

Jessica: Yeah. It’s going to set them up for so much success long term if they…

Andrea: Absolutely

Jessica: …know what they need and be able to ask for it. Um, yeah. I wish we could have you on for another like two hours to talk about 504s..

Tatum: Yeah.

Jessica: We’ll have to have you on again in another season, a future season.

Tatum: Yeah. We should do a whole episode on section 504 cause I feel like I could learn even in that area myself.

Andrea: You should do it on how ADA can protect our kids in school.

Jessica: Oh my gosh, yeah definitely.

Tatum: Oh yeah…

Jessica: If people want to learn more about this before we have you on again on another episode, how can they, you mentioned trainings that you do with parents, can you talk a little bit about those?

Andrea: Right, so one of the best ways to keep in communication as to what’s going on is to go to facebook and the Illinois School for the Deaf Outreach page. Become a friend of that page and then you’ll find out all of the trainings in Illinois, whether it be my training or any training that could benefit a family who has a kid who is deaf and hard of hearing. Then I think that that, that is a great way to know, um, Illinois spelled out. So illinoisdeaf.org  is the Illinois School for the deaf website. If you go there, under the Outreach, it says all of our trainings that are coming up, the only training that I have scheduled coming up is at the Early Hearing Detection and Intervention conference in March. Um, so, you know, we…

Jessica: Just around the corner.

Tatum: Yeah,

Andrea: We can put that information out and um, you can look into that. But Child’s Voice typically has one every fall and every spring. So,

Jessica: Yes, we do, um, and Tatum and I have both sat in those sessions before and they’re incredibly, incredibly helpful so if anyone is in the area, um, and wants to know more, there is more to know and Andrea what holds at Child’s Voice are really good. Um, but check out that website for other locations and other sessions.

Andrea: Absolutely.

Jessica: Um, I guess we should wrap things up there, Tatum?

Tatum: Yeah, that sounds good to me. Um, I agree. I feel like we could go for another few hours, but, um, we’ll leave it at that.

Andrea: …well even if that’s the topic…

All: Laughter.

Tatum: Do you want to include any, uh, specific contact information for yourself, Andrea, or do you want to leave it at that facebook page and the website?

Andrea: Do you want me to give you my email and phone number? It’s my work email. It is for families or professionals who are requiring some, you know, some coaching or assistance, maybe they have, oftentimes I’ll get an email saying, is this in the law, can we legally do this and that’s perfectly fine. They can contact me. If I don’t know the answer, I usually can find it out. Um, I do springboard off of some special ed attorneys that if I don’t have the answer, I’ll find it out for them.

Andrea: It’s andrea.marwah@illinois.gov and my phone number at work is (331-702-8944)

Jessica: Perfect. So, um, you heard it from her, you can email her with any questions you want, you guys.

All: Laughter

Jessica: Um, so, okay, so we’re gonna wrap things up there. Andrea, thank you so much for joining us today. We are so appreciative that you took time to come to Child’s Voice and talk to our listeners. I think everyone’s going to be really excited and happy to hear from you.

Andrea: Great. Thank you. Thank you for having me.

Tatum: Thanks for being on. Listeners, make sure you tune in next time for a follow-up conversation to this one. We’ll be having on Uma Soman and she will be talking with us about supporting children with hearing loss in the mainstream setting. So, it will really, uh, tie nicely into this episode, I think.

Jessica: Yes. Um, and listeners, we would love to hear your reactions from today’s episode. You can email us at podcast@childsvoice.org and you can find episode show notes and archived episodes as well as, um, all of Andrea’s contact information at our Child’s Voice website, childsvoice.org/podcast

Tatum: You can also find us on Twitter and Instagram. I’m @tatumfritzslp, and you can find Jessica @jessicabrockslp.

Jessica: And if you’re interested in learning more about Child’s Voice, Child’s Voice is on Facebook and Twitter and Instagram, with the handle @childs_voice, no apostrophe. We release episodes every other week on Wednesdays so tune in.

Tatum: Yeah, we’ll see you next time. Bye.

CV Students: Bye. Thanks for listening.