Other People's Words

Transcript: Autism Women's Network interview with Kristina Chew: The ABCs of IEPs

Posted in Uncategorized by Tera on December 2, 2009

Here’s a transcript of Sharon daVanport and Tricia Kenney’s interview with Kristina Chew about Individualized Education Plans (IEPs) for the newly-founded Autism Women’s Network radio show.

Sharon daVanport: Hello, everyone. I just wanted to give everyone just a little bit of a snippet of some music that Lindsay Nebbiker is actually going to be recomposing for us here on AWN Radio. I wanna welcome everyone to our first official broadcast for the Autism Women’s Network radio show, here on Blogtalk radio. And I wanted to just go ahead and let everyone know the mission statement for AWN. A lot of you folks might be new to our actual group.

The Autism Women’s Network mission statement is: “To provide effective supports to autistic females of all ages through s sense of community, advocacy and resources.” We also want to let everyone know, too, that our radio show is going to be supportive of all people on the spectrum, and today is a really good example of that.

We have Kristina Chew as our guest today. Kristina is a professor at Saint Peter’s College, and I believe, if I’m not mistaken, Saint Peter’s College is in New Jersey….

I wanna let everybody know, too, that the AWN—the Autism Women’s Network—we have our own website that is currently being designed, and I’ve been told that it looks like it’s just a couple weeks out before we’re actually gonna be able to have everyone be able to go on over to the website and see what it looks like. So we’re getting really excited about that. Hello, Tricia?

Tricia Kenney: Hi.

Sharon daVanport: I’m just gonna go ahead and bring Kristina on, okay?

Kristina Chew: Hi.

Sharon daVanport: Hi. Did you hear me the whole time?

[Transcriber’s note: There were some technical difficulties at Blogtalk radio. Being lazy, I didn’t transcribe the discussion of them.]

Kristina Chew: Yes, I could hear you the whole time. Yes.

Sharon daVanport: So I guess everybody else can, too, that’s in the chat room. Oh, good. So people are telling me that they can hear me in the chat room. That really scared me, so we’re gonna have to make make for sure that the next time this happens, that we are definitely logged on at least 15 to 20 minutes before the show starts, because I really got worried there. I thought I was gonna be disconnecting you, Kristina.

Kristina Chew: Oh, no, that’s okay. Those things always…You never know when those things happen. No problem.

Sharon daVanport: I know. That’s okay. Well, how are you doing?

Kristina Chew: I’m doing good. I’m doing good.

Sharon daVanport: Good. Well, I wanna welcome you to the show.

Kristina Chew: Oh, no. Thank you again for asking me. I’m really excited. Thank you.

Sharon daVanport: Yeah. Hey, Tricia? Are you still with us?

Tricia Kenney: Yeah.

Sharon daVanport: Oh, okay. I just wanted to see if you had any questions for Kristina before we get started. I know that you had some really big challenges yourself with IEPs.

Tricia Kenney: Oh, gosh, yeah. Not until this past year, actually. Before that, we were very fortunate, and it just ended up being really kind of a nightmare, what I was going through with the kids’ school as far as what they wouldn’t put into the IEP, and what they were putting into the IEP that I didn’t want there. Really, I didn’t feel like I had any rights. So I think that it’s really good that we’re doing this show today with Kristina, so that she can let us know what our rights are and what, in fact, we can do during those situations.

Sharon daVanport: Right. And I know that I posted some links—I don’t know if ev everybody can still see them in the chat room. Do you see the links there, Tricis, in the chat room that I posted earlier? Are they still there?

Tricia Kenney: No, I don’t see…

Sharon daVanport: See, I think when we lost the switchboard for a minute…I’ll repost those links, though, in just a second. I’m gonna be posting some links that Kristina’s gonna be referencing. One of them is the Wrightslaw link. Is that correct, Kristina?

Kristina Chew: Yes. Yes, yes.

Sharon daVanport: Okay. Can you start off by telling our listeners, Kristina, how you are involved in the autism community? You’re a mother to an autistic son. Is that correct?

Kristina Chew: Yes, yes. My son Charlie is 12 years old, and he is on the moderate-to-severe end of the spectrum. He has a lot of abilities, but he also has a lot of challenges—especially he’s very challenged as far as communication, because he is verbal but he has very minimal language. He has a lot of struggles in his academic programming. He really doesn’t seem to be able to read, despite 8 years plus of efforts to teach him. I’m bringing up all these things because they all definitely affect his IEP and his placement.

Tricia Kenney: Can you explain to everybody exactly what an IEP is?

Kristina Chew: Yes. Yes. An IEP stands for “Individualized Education Plan,” and it’s a written document that lists, among other things, all the special education services that your child receives. And those services don’t only include what your child receives in the classroom from a teacher, but can also include things like speech therapy, occupational therapy, physical therapy.

I always think of the IEP as a legal document, because what’s in the IEP is what’s supposed to happen with your child at school. Further, an IEP is also developed by a team. This includes school staff, but it includes children’s parents, and eventually, it could even include the child. But I think that’s something that’s really important to emphasize, is that, as parents, we are a part of the IEP team; and we have as many rights to change the IEP, to influence what gets put into the IEP, and also to call IEP meetings as an administrator does.

And that’s a really important thing that I think parents need to realize, because my husband and I have had many adventures in developing iEPs for our son. But in the past year, we’ve had an adventure that was a little more trying and difficult than in the past. And also, I think that we felt as parents that we really were not being treated as equal members of the IEP team.

Sharon daVanport: Is that something that you feel you can talk about a little bit, to give our listeners a little bit of an idea of what you faced as a challenge this past year?

Kristina Chew: Definitely. And interrupt me any time. Let me know if I’m talking too fast, etc. I do live in northern New Jersey, so I get used to talking pretty fast to keep up with people. Until this year, my son has always been—except for a brief period—in a public school autism program. And my son, due to the academic and communication challenges he has, he’s always had to have a pretty high level of services. He’s generally been in a one-on-one classroom; he always has to have a Behavior Plan (due to the academic and communication chsallenges, he has behavior trouble).

What happened in the past year was, in 2008 my son transitioned to middle school. He had done okay up to that point. He had always had trouble, but we seemed to be able to manage it. Just to give you a picture of our school district in north central New Jersey, [it] has become known as a district that has a very good autism program in the public schools. So the tendency in the school district is to keep children in the district instead of sending them out. That’s why we moved to the school district—because of this.

Sharon daVanport: Oh , okay.

Kristina Chew: On the one hand, it seemed like a great arrangement. There seemed to be lot of high-level autism consultants with a background in Applied Behavior Analysis in the program. The teachers and staff, many of them seemed to have really good training, which is something that we always were concerned about, as far as many of the teachers and staff were actually getting certificates and Masters’ in Applied Behavior Analysis. On paper, all these things are very important for my son.

Tricia Kenney: Right. New Jersey seems to be the top place in the country. When we’ve heard all of the news posts and everything, it looks like that would be the optimal place to be if you have autistic children.

Kristina Chew: I think in many ways it is, and I think that some of the problems that my son faced had to do with his age—he became 12, he’s in middle school—and I think some of it also just shows the limitations of what public schools can do, and the difficulties of teaching autistic children.

Over the past year, my son’s behavior problems increased quite a bit. My son has, among other behaviors, self-injurious behavior, and some other things that I think are really difficult to talk about with autism. But he has a lot of behavior issues. I just wanna say, as a sidenote, I hate emphasizing them too much, because often there’s a tendency to only talk about the things that he has trouble with.

Sharon daVanport: Right.

Kristina Chew: That’s a thing to think about in your IEP. I’ve had many meetings where I’ve realized: We just spent 90 percent of the time talking about what Charlie can’t do, and how he’s aggressive or how he’s throwing things…these difficult things. We never talk enough about what he can do. So that’s one thing you might always keep as a mantra at an IEP meeting. Talk about positive things—what can your child do. Because, in reality, my son only has behavior problems for…They’re not things that he always does, but they always tend to define him.

So what happened in our school district was, when my son had behavior trouble, what should’ve happened was following IDEA, which is the Individuals with Disabilities Education Act. What they should have done was to perform something called a functional behavior assessment. There’s a lot of information about the procedures for those on the Wrightslaw website, and also on this other website called AboutAutismLaw.com.

Sharon daVanport: I saw that on there when I was looking through.

Kristina Chew: Yeah. I really think that a lot of these websites provide a lot of really good, solid information. They only difficulty is that they’re pretty packed, and sometimes I think it’s hard to know where to start looking.

Sharon daVanport: Right.

Kristina Chew: The functional behavior assessment, that’s a good term to know. So what the school should have done was to have their consultant, with a behaviorist, come in and look at him and do a real analysis and understand why he’s having these behaviors.

In practice, our school district did something which I believe is illegal. They mentioned not in an IEP meeting that he needed a very dramatic change in placement. In this case, our school district suggested that my son needed a residential placement.

Sharon daVanport: Oh, my goodness! Are they even qualified to make that judgement call or assessment?

Kristina Chew: If it had come from the top behavior person—if she had said that to us directly, with a report with evidence, with documents, then that’s a [statement?] they would have been qualified to make. They would have to mention that in an IEP meeting, because that’s a very dramatic change in placement. Those kinds of things should be talked about in a formal meeting, where you have your tape recorder running. Maybe you have your advocate with you; maybe you have a lawyer if it gets to that point.

In practice, the suggestion was made to me by my son’s teacher in our house. It’s technically illegal, and the administrator of the school district eventually acknowledged this to me. One of the features of the public school autism program in our town is that the teachers come for home visits. On paper, this is a great thing. Then you feel that, with the teacher coming over, you can have a lot of integration between home and school. The teacher can provide some training, perhaps, if parents need it; you as a parent can let the teacher know what is it like for your child at home. I have talked to many parents in our school district who feel very positively about this. So I don’t wanna say…Our experience sort of turned out a different way in practice.

This is not the right setting to mention this, and I was completely taken aback, as you can imagine. I burst into tears, actually. The setting that she mentioned is a school called Bancroft, which, if you Google “Bandcroft and autism,” you’ll see has a pretty difficult reputation. Some pretty difficult things have happened there. I was absolutely shocked.

At the time, I think, though, that because my husband and I, we invested a lot in the school district and felt that it was the right place for our son, because the teachers had the training and the consultants were available, we sort of went along with them. And I regret this. I realize that what I should have said was: “We’re having an IEP meeting tomorrow. You’re doing this assessment and you’re not gonna mention this placement issue again until we have evidence for why you think we need to change it.”

My son was having some pretty difficult behavior problems—again, involving the self-injurious behavior and difficult things like throwing—and what this all was really saying was that he wasn’t in the right setting. So what we should’ve done was the assessment. The assessment has yet to have actually been done. The school district has been dragging its feet about it. Now it’s been over a year. That’s not good.

But having the assessment done: What it means is that the school can bring in an evaluator to observe your child and actually write up a report, which would indicate why, according to the consultant, the child’s having these behavior problems and how they’re affecting his or her education.

Now, this is the important step. If your school district decides they have to do this, and you don’t agree—you don’t think that this is a full portrait of your child, or you feel that the consultant has missed out on things, or you feel (which I think parents can honestly feel) that the consultant is being paid by the school district; they’re not necessarily thinking about your child the way you are—you have every right to bring in an independent evaluator.

Sharon daVanport: I think that’s real important for everyone to know. That’s something I didn’t know right away, and I’m so glad that I do know that now: that you absolutely can request…Isn’t there a process, though, that you have to go through, Kristina? You have to first ask them to prove their point?

Kristina Chew: As I understand it, you have the right to have an independent evaluator come in when you want, especially if you’re going to pay for it. Now if you want the school district to pay for the independent evaluator, then you would have to actually contest the evaluation that they had provided.

Sharon daVanport: Okay.

Kristina Chew: Again, this also brings up another theme with IEPs, which is that so often, it really comes down to issues of money—who’s paying for what. As long as the district is funding things, or you’re trying to get them to fund things, they can call the shots. But if you’re able to get someone in, and you can afford to do it, I really strongly recommend it, actually. We do have a consultant, a behaviorist who works for the Loovaas Agency who had followd my son for some years earlier. She wasn’t actually providing any services for my son last year, but we definitely had a good relationship with her still. And she knows my son. She’s followed him at home and has observed him many times.

So I think it’s really important to have someone that you trust. It’s always good, I think, to have someone else see what’s going on with a child. I think that one of the problems that happened with my son was that the school district became a bit of a closed system, where all the people they had looking at him were all connected. They were all part of the school district.

Sharon daVanport: Oh, okay.

Kristina Chew: On the one hand, we wanted to follow what they were saying, because they did have a lot of expertise. On the other hand, they still really needed someone else to look at them and when we suggested that we wanted someone to come in, they were definitely not happy about that. But, again, you have the right to do that,

Just as another point to bring up: Get everything in writing. I think that e-mail is a real boon. You really need to document every single little thing.

Sharon daVanport: I believe so, too. Right.

Kristina Chew: And you really can do that by e-mail. The main person you’re gonna be e-mailing is your case manager, of course. Then you can also eventually CC if you want the special ed director, other people. But the case manager is the main person, because he or she handles the paperwork.

But you do wanna create a paper trail. I even started to e-mail things like when I had received documents in my son’s backpack to let them know that I got them. If I didn’t get them, I let them know that. If you wanna record your IEP meetings, which I absolutely think you have to do. Even if you don’t actually use the evidence on the tapes, just saying that you’re recording the meeting is a very strong statement.

Sharon daVanport: Don’t you have to go by your state’s laws, though? Aren’t there certain recording laws or something in some states? I read that on one of the websites.

Kristina Chew: I know in New Jersey you are allowed to. You have to give them prior notice. In New Jersey, at least, you need to give them 5 days notice, and then also, of course, if you can tape, they can tape, too, and that’s fair. I think that’s very fair. But you can simply send them an e-mail. I’m not entirely sure on this, but I think once you send it, I think that it can be the policy for all of your IEP meetings, but I definitely encourage it. I didn’t think it was necessary in the beginning and I haven’t actually had to use any of the tapes in a legal situation, but I’m very glad to know that I do it. It’s a very important step to do.

Sharon daVanport: Right. Kristina, can you tell us also: Who qualifies for an IEP? A lot of parents wonder: Can their child go ahead and get an IEP if they’re waiting on an assessment, like they think their child might be on the spectrum? Who qualifies for IEPs?

Kristina Chew: You do actually have to have a classification and a diagnosis, I think. Let me find you something more.

Sharon daVanport: I know that there’s been some disputes—and I don’t know if this goes state by state, and this is something I wanted to ask you, but this happened to Tricia’s son and I’ll let Tricia talk more about this—but I know that this was also brought up at a talk that I gave just a few months ago to some teachers. There comes a time when your child might be diagnosed with Asperger Syndrome, but then at school they dont feel that they are on the spectrum, or they say that even if they are, that they don’t meet the criteria according to the school district guidelines. So then they won’t give you an IEP. Now that happened to Tricia. Can you explain that, Tricia? What happened to you?

Tricia Kenney: What exactly they did was: Both of my children have a diagnosis of autism and ADHD. When I went to my son Ryan’s IEP meeting, they said that they do not want to address autism at all. They’re taking that diagnosis off of his IEP and just leaving the ADHD. I said: “Well, what do you mean? He’s still autistic.”

Kristina Chew: Did they give you any report or any reason they were doing that?

Tricia Kenney: Yeah. Because they said that they wanted to just address his ADHD because they felt that that was his only issue in school, and his only issue as far as learning. They didn’t feel that autism came into play at all in his education, and that they just wanted to address the ADHD and also his behavior issues. I said: “You can’t do that. He’s got an official diagnosis.” And they said: “Well, that’s what we’re gonna do. From now on, he’s just going to be labelled as ADHD in the school.”

Sharon daVanport: See, Kristina, I have heard that school districts can actually do that, and that just blows my mind.

Kristina Chew: I don’t think that they’re legally allowed to do that, if you have a diagnosis. This might be a step where you need to call in an advocate or a lawyer, unfortunately. But your child has a diagnosis, and because of that, they do qualify for the services. I also want you to keep in mind is in New Jersey, a neurologist has to make a diagnosis of autism, so a school district can’t really make a diagnosis. So here in New Jersey, at least, the school district isn’t the person who makes the actual diagnosis.

Tricia Kenney: Here, either, that doesn’t [happen?]

Kristina Chew: Where do you live, Tricia?

Tricia Kenney: This is in Missouri.

Kristina Chew: Oh, Missouri. Okay.

Sharon daVanport: Here in Nebraska, they can do that. In Nebraska, I was giving this talk to teachers, and there was a doctor with me giving the talk. Somebody asked a question, and one of the administrators stood up during our talk and addressed the question and said: “Yes. As a school district there is a clause” —see, this is what I didn’t know: if it’s just Nebraska, if it’s a state issue—tht they can, through the school board, they can say that your child does not meet the criteria to be addressed as an autistic child. And that happens a lot with kids who have an Asperger’s diagnosis.

Kristina Chew: I can see that, actually. My son is [unknown]a little different—he was born in St. Louis—he’s always had an autism diagnosis, and so he’s always clearly needed services. I think that one way you might approach that issue—I think the ultimate issue would be to say your child does have this diagnosis. He does qualify for the services. Then you need to bring in a private evaluator—is to look at the goals and objectives. Those are the things in the IEP that drive the placement, and also the services. I think the thing to keep in mind is, if your child is not able to meet the goals for whatever reason—briefly putting aside the issue of what’s the diagnosis—if your child can’t meet the goals, then clearly, other kinds of services or teaching methods or somesuch are needed.

I’ve found, sometimes, because at our school district we got into a very unpleasant back-and-forth about the type of placement, the type of methology that was being used, and I was reminded again and again by an advocate that goals and objectives drive the placement. So you really need to look at the goals: what are the things that a child’s trying to learn? In other words, you really wanna think of what are those nitty-gritty things in the IEP? Because, again, I found that my husband and I, we tend to get hung up about the bigger picture, the philosophical issues. But the reality is, those goals and objectives are what determines what your child’s actually being taught in the classroom.

Sharon daVanport: Right.

Kristina Chew: And in some cases for my son, the goals have been too difficult for him. Often because they goals that are written for my son have come out of a cookie-cutter IEP, they’re not actually individualized to his needs. Maybe that might be one way to address it, is to say: “Okay, the diagnosis is the diagnosis. We’re going to still talk about that, but in the meantime, he’s not meeting his criteria for where he should be in reading. What can we do to make that happen?”

Sharon daVanport: You know what they’re saying in the chat room, Kristina? Somebody just made a comment in the chat room that in Pennsylvania and the school districts there, they can rediagnose and go by what the school says. I guess she’s saying that in Pennsylvania, the schools require that a Pennsylvania-certified school psychologist gets to diagnose if there’s to be school services. And then if your diagnosis is by an MD or a psychologist, they can actually completely throw it out if they don’t agree with it.

See, this is where I’m saying I think this is just…On a federal level, there needs to be some changes. If in some states they can’t do that, and in, like, Pennsylvania the person is saying exactly what I was told that happens in Nebraska. It sounds like that might have been what Tricia’s up against: that they had the right to throw it out. But I guess what you’re saying is that, even if they may have the right to throw it out, they still have to prove it. So you can hold them accountable to that and bring in a separate assessor, right?

Kristina Chew: I think the issue here is that you have to bring in your own person. And of course, that’s a difficult process because of the cost, finding someone that you trust, getting the report written—all these things. In my case, our school district made it very difficult for us to bring in an independent person.

Sharon daVanport: How did you end up doing that? Can you tell our listeners how you, actually, were able to accomplish that?

Kristina Chew: I set up a time, and I made sure that I read the IDEA website and Wrightslaw several times, and then I said to them: “You completely failed to go by the procedure.” When someone tells me something that they say is the policy or the law, my tendency, personally, is to go by it. Now I’ve learned, the reality is if the administrator says that we have this policy, it’s like: “Thank you very much, but tell me what the website is. Give me a document that says that that’s your policy.”

Sharon daVanport: Very good.

Kristina Chew: The district, they made it incredibly difficult for her to visit. What they did—which has not surprised her, either—is they said: “You can only come in at this very specific time of the day.”

Sharon daVanport: They tried to make it hard.

Kristina Chew: They made it hard, and they basically made themselves to be complete fill in word. [Laughter] When you e-mail, and you e-mail constantly, you cite the part of the Wrightslaw website, which says: “You can have an independent evaluator come in and look at your child, and you can have an independent assessment.” Again, if you’re paying for it, I think that makes a really big difference. And my husband and I have been able to do that, generally, but I know not everyone is.

Sharon daVanport: Right. They said in the chat room that it’s really terrible for low-income families. What are they supposed to do? This is where I’d like to see the laws change here. It goes to show that there really does need to be some changes, because not every family’s gonna be able to afford to bring in someone to assess their child privately.

Tricia Kenney: Exactly.

Sharon daVanport: But there is a way to get the school district to pay. You just have to—

Kristina Chew: You havet to keep at them. And even when you e-mail them—’cause they ignored many of my e-mails—I put in the subject line: “First request,” “second request,” “third request,” etc. I definitely kept track of it. I wish I had a better answer: You can’t really worry about being a nice person. I’ve kind of found when I’ve tried to feel sort of friendly, with the school district on some of these things, it hasn’t really worked. On the other hand, you don’t wanna turn yourself into a complete unpleasant family to deal with, but what you always wanna do is cite the law, and to make it really clear: “My child has a right to this, and we’re going to do this.”

It also took a very long time to get the whole thing set up, so I asked for specific dates from the evaluator. I made it clear that we would go along with whatever they wanted, as far as when she could come in. But I really did it by keeping at them. I think there’s two ways that I’ve dealt with the school district. One is by being completely dogged and constantly e-mailing, but also trying to be a little more conciliatory at times. So instead of putting up a big fight, such as: “What? You won’t let her come in for more than an hour?” a good consultant, I think, can see what they need to see in an hour.

Now, the other thing about this is that having gotten that done—I just had a point that completely slipped out of my mind, about getting these independent evaluators—but I do think you have to be dogged, and you sort of have to be…This is something that I started to do this past year. On the one hand, I was spending a lot of time e-mailing; I was writing letters; another thing you can do is if you made these requests and you’re not getting responded to, to send a letter to your case manager or to the special ed director by Certified or Registered mail. That way, they have to sign for the letter, and also you know it gets there, and also they have to put a copy of it in your child’s file.

Sharon daVanport: Right.

Kristina Chew: I’m sure many people have done this, but of course, one thing you should do is make an appointment and go look at your child’s file and see what kinds of things are in there. They’re supposed to have everything from IEPs to any documents that belong to your child, and you have a completel right to do this. I think it’s definitely a really important thing to do.

Tricia Kenney: So if you’re going for the first time, if your child just is diagnosed and you’re going for the first time to your first IEP meeting, what should you bring with you? How should you be prepared? Do you need an advocate with you for that first IEP? What should a parent do?

Kristina Chew: I think it’s not a bad idea to have an advocate. They don’t have to be the ABA expert. You can bring maybe another parent who has a child. In fact, I haven’t done this, but friends have told me they’ve done that—someone who basically is a friend. As long as you tell the school district in advance that this person is coming—’cause you have to tell them in advance—it should be okay.

The person doesn’t have to be the expert about IEPs or IDEA; just another person. They might, for instance, just sit there and take notes. Often, I’ve found in IEPs—my husband and I usually are able to go together—we both get so distracted by talking about things that we always miss something. And so I think just having another person is not a bad idea. Again, it doesn’t have to be Super Big Name Expert#&8482;, just another person.

Also, I think from a psychological perspective, it’s very nice to have someone else with you because often, in IEP meetings, you feel like you’re the one parent, and there’s about 6 or 7 people staring at you across the table.

Tricia Kenney: Right.

Sharon daVanport: That’s kind of the next point I wanted you to touch on. I know we’ve kind of already touched on this, so I’m gonna word this a little bit differently, because I know there’s situations I’ve heard other people were in with IEPs. We were talking about if we object to something in the IEP. A lot of people wanna know: Is the team as a whole required to honor the parents’ request?

I just had a friend in Omaha—I live in Nebraska—she objected to something in the IEP, so she absolutely refused to sign it. She said: “No, I’m not gonna sign it. I really need to look over this and see what I am missing here, because I just do not think this is gonna work.” Now, can you touch on what we can and can’t do? If we do have the right to not sign it, and if we don’t sign it, is there something we need to follow up with?

Kristina Chew: You do have the right to not sign it. Also, I never sign it at the meeting. Before the meeting, I ask for a draft copy. Even if it’s not 100 percent complete, you can definitely do that. So I would recommend doing that, because anyone coming into any kind of meeting—especially about such an important topic—you do wanna know what’s going on. You have the right to ask for the draft.

Secondly, I don’t sign it at all. You have 15 days from the time of the meeting to sign it, and you should definitely take those 15 days. I go home and I read it; I put it away; I sleep on it. I tend to sign it the last minute. You should feel under no pressure to sign it at the meeting. You have every right to go home and look it over. I have made suggestions, even things like typos.

Sharon daVanport: But if you object to something, though, don’t you have to send in a formal, written—?

Kristina Chew: If you do object to something, then you have to send in a formal letter, a formal document, of course. And you have to realize what you’re heading towards. Hopefully, you’re heading towards another IEP meeting, maybe where you can talk about more evaluations of your child; more discussion. Hopefully, that’s what you do, because unfortunately, if the school district completely disagrees, you’re heading towards mediation, and you probably should hire a lawyer at that point.

Sharon daVanport: Right.

Tricia Kenney: What we ended up doing is, if there were things that we disagreed about in my son’s IEP, we just continued it the next day or that following week. We just kept going and kept going until we worked it out, but we were limited up to 15 hours or something like that for the IEP meeting. So we had come to our last meeting that we could have on that particular IEP, because you’re only allowed so many hours for an IEP.

Sharon daVanport: Oh, wow.

Kristina Chew: Do they have a justification for that time period? ‘Cause I’ve never had that.

Tricia Kenney: I have no idea, but my advocate actually told me about that. He said: “Well, this meeting’s gonna have to be our last meeting for this IEP, because you’re only allowed so many hours of an IEP meeting per IEP.

Sharon daVanport: You know what I’d say?: “Okay, where’s the website to that? Where’s the law?”

Tricia Kenney: Right.

Kristina Chew: I hadn’t heard about that, really. On the other hand, for instance, one topic that came up was they had reevaluated my son by having school personnel speech therapists, etc., evaluate him, and they refused to let me participate and to watch. Anyways, I wasn’t very happy about that. I could’ve pushed it, but what they ended up pulling up was their website about their visitor policy.

Sharon daVanport: Oh, so it got personal. [Laughter]

Kristina Chew: Exactly. So the visitor policy was: “We don’t let visitors interfere with education,” and of course I’m thinking: “I’m his parent. I’m not just a random visitor.” But anyway, that’s just to say the policy they may be referring to to scare you might just be something that you can actually dispute.

Tricia Kenney: Mmm.

Sharon daVanport: I see.

Kristina Chew: The special ed administrator acted like there was this big policy about parents watching children during evaluations. The only policy she could pull up was a policy about visitors in general, and I don’t think that was really appropriate for the situation. [Laughter]

Tricia Kenney: No.

Sharon daVanport: No.

Kristina Chew: But I decided not to push it, because it was also the issue of: “What’s the real goal here?” I find in this IEP process that often, I feel as a parent not only that my and my child’s rights are actually being trampled, but I feel personally very, very…not treated in what I think is a fair and appropriate manner. I think that a lot of resentments tend to build up. That did happen with this last year, because it was a pretty aggravating situation.

Tricia Kenney: Right. They tend to act like: “We’re the experts. We know what’s best for this child, and we know what we’re willing to do in our situation and our district, and you’re just a parent. You’re just a mom. You don’t know anything.”

Kristina Chew: Exactly. And then on the other hand, you hear someone saying: “Of course, parents know their children best,” and you feel like saying: “Yes. So then why don’t you act like we actually do?”

[Laughter]

Because we do.

Sharon daVanport: That’s right.

Kristina Chew: I know that’s the case, and maybe you should even write that on top of your notepad. But you as a parent really have rights. And one thing that I finally ended up doing, because at one point after all the dust had settled and we agreed to a district placement for my son, I still wanted to have a meeting. The IEP that he had had a lot of things in it that I didn’t agree with anymore, and I wanted to make some changes before he started at his new placement. The school district said: “No. We don’t think you need to have an IEP meeting. It’s not warranted. We’ve reviewed everything.” And so I wrote them about 10 to 12 e-mails.

That didn’t get anywhere. At this point, we were dropping my son off at school because he was having issues with the bus, and so I was basically at the school a lot more. One day I happened to be there to pick him up and I ran into the special ed director. I would not let her go until she had agreed to have a meeting with me.

Sharon daVanport: Wow.

Kristina Chew: So I think that sometimes you really do have to make yourself a physical presence at the school. It was a much more aggressive thing than I prefer to do, but it was definitely worth it. Because they were just not gonna meet with me, and they were almost able to hide behind all this e-mail and all these letters, and sometimes I really think you do have to show up. That’s a good reason, for instance, for going into the administrative office and looking at your child’s records, because they know you’re there. You do have to assert your presence.

Tricia Kenney: What about adding into an IEP the way a school can or can’t deal with your child in a disciplinary manner? Say, for instance, I said: “Under no circumstances do I want my son suspended from school or put into detention because of his frustration.” Can you do that?

Kristina Chew: I think you can. My son always has a Behavior Intervention Plan. In his case, it involves dealing with other kinds of things like, as I said, throwing or other things that he does. But I think what you have to do is: those kinds of things should be laid out, but you always need to have some kind of justification for that. Also, I think you need to emphasize how suspending him or detention would adversely affect attaining his IEP goals. The way I think to argue that would be, instead of saying: “This might hurt him, because I could see how placing a child in such a situation would really be detrimental, would teach him the wrong thing,” what might have to be said instead is: “Putting this child into detention is keeping him from attaining these goals—his social goals, perhaps, or about social skills. Did you have a Behavior Intervention Plan in your IEP?

Tricia Kenney: Well, we were working towards that and, like I said, the IEP ended up going on for hours and hours and days and ended up being a couple of weeks. They were of the mindset that: “No. If he does something wrong; if he throws something; if he wrecks something in the room; if he hits somebody, he’s getting suspended or detention, regardless.”

Sharon daVanport: They really wouldn’t work with you, would they, Tricia?

Tricia Kenney: Right.

Kristina Chew: Where in Missouri are you, too, may I ask?

Tricia Kenney: St. Louis.

Kristina Chew: So do you live in the county, the region with the special schools?…You live in the city. We lived in the county.

Tricia Kenney: Yeah. I heard it’s better there.

Kristina Chew: I have kind of found that suburban places tend to be better, but I can’t always say that. I think it depends on your situation.

Tricia Kenney: Right. They absolutely refused to do anything besides what their regular policy for that behavior in the school system was written up as.

Sharon daVanport: But they held him accountable and at the same level of functionality as the other students, and did not take into account his frustrations, his level of—

Tricia Kenney: They did not want to address the fact that it was his autism manifesting.

Sharon daVanport: They just wanted to address the ADHD, but that’s frustration too. If he had an IEP for that, it would seem like they would’ve worked with that. That’s something, though, that I’d like for you to be able to address too, Kristina, because that would probably answer for Tricia—when they didn’t follow the IEP. A lot of parents say: “We as parents may understand the IEP laws and the rights, but what if we find that a teacher is not following the IEP?”

What steps need to be taken to resolve that? Obviously, you contact the teacher, but I always tell parents: “Don’t assume that your child’s teacher—especially when you get into junior high and high school, and they have all these different classes—that they know that your child has an IEP. I found that out the hard way a few years ago with my son in junior high. There was one teacher that was not going by his IEP, and it was just blowing my mind. I found out that he didn’t even know my son had one. [Laughter] And I was like: “Great. Okay.” So I found out that you just can’t assume that teachers know.

But what if they are not following it? What if they just refuse to abide by it? I had somebody ask this question on Facebook, and they wanted you to be able to address this, because they said that their child had an IEP, but the teacher didn’t want to abide by it because they felt that it was showing favoritism to that child, and would make the other classmates feel—

Kristina Chew: Oh, boy. That’s bad. Then the teacher’s in the wrong. I would preferably call a meeting and say: “My child’s IEP is not being followed, and he’s not achieving his goals and objectives. This child has an IEP for a reason.” Also, this is a legal document. If a teacher’s not following it, he or she is not doing their job legally.

Sharon daVanport: What if you do all of that and they still don’t? You’ve sent letters. Is there an X amount of time that they have? Isn’t it 30 days before they have to implement the IEP. Is that correct?

Kristina Chew: Um-hm. Yes. Yes.

Sharon daVanport: Is that from the time it’s signed, or from the time of the meeting?

Kristina Chew: From the time that it’s signed, because when you sign it is when it becomes official. Again, you have to go through the messy process of proving that it’s not happening. You have to probably get someone in there who can observe and write up a report. You have to have some kind of documentation. I feel that, unfortunately, all my answers are coming down to one. [Laughter]

Sharon daVanport: We need to do that. We need to be able to reiterate this for everyone.

Kristina Chew: I think that one thing as a parent, and I’ve always struggled with this because I want to be on good terms with the school district. I want my son to be liked. I still feel a little nervous as a pushy parent. But I think that we as parents really need to know that we have rights. We have the law behind us; it’s the reason our children are in school. My son would never have been educated in a public school district without the IDEA. The IEP, think of it as a contract. If someone’s not following the contract then they really need to.

My son, everything is so much out of his control. Without the IEP he really has nothing. I remind myself about that. I can’t emphasize enoiugh that the school district’s reasons for the people they hire, for the programs they choose, for the decisions they make, they’re not always bound by education, unfortunately. It’s a depressing thought. They’re often bound by budget, of course. It’s always the bottom line. And they’re also, as I saw with our school district, many of the decisions were made for legal reasons.

If people have read my blog We Go with Him, one of the really challenging things that happened was the school district insisted my son had to wear a helmet at school. He’s unfortunately still wearing it in the school district’s new placement, because it’s specified in the behavior plan that he has to. I really regret this has happened, and I really regret that I did not proceed with this differently.

One of the things that I realized is the school district did this, in part, for legal reasons, because of course, if he got hurt at school, we could hold them accountable. This is where things get pretty tricky, because, of course, I understand the behaviors that he has, but there are certainly better ways to deal with them than that.

The one argument that I started to make to the school district was: “You can maybe do some of these things as a temporary measure, but you said that you were gonna fade this out—that you were gonna help him not have to wear it.” And they never did that. Once they put it on him, they pretty much refused to do anything from that point—again, I think for legal reasons. So, again, one thing to keep in mind is a school district is not always thinking about education.

Sharon daVanport: That’s real important to keep in mind, because it does come down sometimes to the bottom line. I think a lot of people need to get to know, too, that from state to state it varies. I know that in Florida, and I know in New Jersey as well, and in New York that if you cannot get the public schools to work with you with your child’s IEP, they can actually qualify to have their tuition paid for to go to a private school. There are some states that will allow that.

Kristina Chew: That is the case in New Jersey. Then there’s the other issue of which school is your child going to? My son is now in an out-of-district placement; he’s in a developmental learning center. We didn’t want him to go to a separate school, because there are a lot of benefits, obviously, being in a regular public school. It was a combination of his needs and also the school district became completely unwilling to integrate him in any way.

Sharon daVanport: Wow.

Kristina Chew: What started to happen was, they just wanted to contain him and the other special ed kids instead of making the effort. Which is a difficult effort, I understand that.

Tricia Kenney: But it’s their obligation.

Sharon daVanport: But it’s the child that pays the price for it.

Kristina Chew: They do. Whenever I felt that I was being too insistent or sending way too many e-mails or when I was hounding that special ed director in her face, I said to myself: “Look what’s happened to my son. His education is his life. This is what lays the groundwork for the rest of his future. This is just someone’s job. They’re gonna go home and forget about it.”

Tricia Kenney: Right. A lot of people just forgo the education part. They don’t think about that, because everybody’s so focused on the behavior issues that they put aside the fact that: “Hey. My son’s 8 years old; he should be reading by now. He should be able to read this; he should be able to write; he should be able to do something in that respect.” And everybody’s so worried about: “Yes, well, he does this,” or “He has tantrums,” or “He gets upset about this and that” and so there’s no learning going on. That’s not right. Their job is still to teach your children.

Kristina Chew: This happens all the time to us. Sometimes I feel like we can never get away from behavior problems, but I’ve realized the way to think about it is: He’s having the behaviors ’cause something isn’t going right. He’s trying desperately to learn, I know my son is. He likes learning. He really aims to please. He’s a very compliant child in a lot of ways. He has this neurological disability that makes life really difficult for him. But behavior problems occur because something isn’t right in how he’s being taught.

Sharon daVanport: Right.

Kristina Chew: One of the hard things that you have to emphasize is: It’s because the teaching methods aren’t appropriate, or maybe the programs are too difficult. It’s not because your child is a bad child. I think, unfortunately, that kind of comes up again and again.

I’m a teacher; I teach college students; I teach them Latin and Greek, so it’s very different, but, on the other hand, when my class isn’t getting it, as I’ve learned from 20 years of teaching, it’s not because they’re not trying, because they stayed up late, because they’re lazy—maybe occassionally, sometimes. But it’s because I’m not teaching them the way they need to be taught. I really think that, as a teacher, it’s your job to change. Every class is different.

But that often gets forgotten. Often, the IEP, which does have that word “individualized” in its title, so often it doesn’t feel like that’s the case at all. I have, by the way, in reviewing my son’s IEP, seen the names of other children in it. Once it was the name “Raymond.” They just pulled this out of a hat. Again, I really think that’s another reason you wanna go home and read it. Don’t believe them if they say they wrote this just for your son. It’s not always the case.

Sharon daVanport: Right. Well, since we have a few minutes left, I wanted to go over some website information that is really important. I looked over these websites when you sent them to me, and they’re really good: www.wrightslaw.com and there’s another one: www.aboutautismlaw.com Another one is specialedlaw.blogs.com. That’s a really good one, too. I was looking at all of these, and they have such good information. Kristina, what is your blog?

Kristina Chew: It’s called We Go with Him. I do talk quite a bit about education, because I guess it’s my favorite topic.

Sharon daVanport: Right. It’s so great to have you on here. And I know that we had a couple people on Facebook, too, from Canada, and I looked up the Autism Society of Canada, and they do have a special education resource page where it is full of different links. That might be able to help some of the people who have questions about Canada. I don’t know how it differs, the exact legalities of it all, but I’m sure it is different, being that it’s a different country. We want to be able to at least provide some kind of resource for our listeners there, too.

Were there any other questions, Tricia, that you had real quick? We’ve only got two minutes left.

Tricia Kenney: Well, yeah, there’s probably a couple more hours of talk we could do.

[Laughter]

Kristina Chew: This is an important topic.

Tricia Kenney: So many parents do need help. If you can find an advocate, definitely get one. I mentioned earlier that a lot of people live in areas where they do not have access to an advocate, because they live so far out in the boonies or whatever.

Sharon daVanport: And remember: It doesn’t have to be a person that just does that. Like Kristina said, it could be a family friend. It could be someone that’s just taking notes, someone there that’s supportive of you to start out with, if you can’t find a person who’s actually assigned as an advocate.

Tricia Kenney: Right. Don’t sign the IEP there; take it home, look it over, and then you can talk to your friends online or in other school districts or whatever, and figure out what you like and what you don’t like and what what your rights are at that point. Then you can call another IEP meeting if you need to or whatever. But you don’t have to sign the paperwork right there at all.

Kristina Chew: You truly should not let them pressure you. What goes on in that room is one thing, but you need to take that document out and you need to look at it, have someone else—another parent, who has a child, maybe an older child who’s been through the system before. I think it’s really important to emphasize that you have time. Don’t feel rushed. Don’t feel pressured.

I wanted to mention one more website. It’s the National Dissemination Center for Children with Disabilities. I really like this website. My advocate showed me it, and I find it has a really helpful section especially for parents going into an IEP meeting. I love the Wrightslaw site, but sometimes I feel kind of overwhelmed when I look at it, and, to me, this website kind of breaks it down a little bit. There’s a section called Educate Children (3-22,) I think has a lot of really good practical advice.

Sharon daVanport: Very good. Well, Kristina, I wanna thank you so much for being on today and we will definitely have to have you back.

Kristina Chew: Thanks for asking me. I feel really honored to be talking about this. I hope I’ve been helpful.

Sharon daVanport: You really have. Thank you so much. We’ll be talking to you later.

Kristina Chew: Okay, thank you. Take care. Bye.

Sharon daVanport: Well, Tricia, we’ve only got 30 seconds left.

Tricia Kenney: W don’t have our website up yet, but if you wanna find us, we’re on Twitter @autismwomen and we’re also on Facebook, if you wanna do a search for Autism Women’s Network on there in Groups, that’s where we are on there. We’ll be doing more shows. Every Friday is gonna be our regular show time, and that will be at 10 AM Central Standard Time. Anything else?

Sharon daVanport: That’s it. We’ll talk to you guys next week. All right. Bye-bye.

Tricia Kenney: Thank you everyone. Bye-bye.

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