Last updated on November 26, 2023
Podcast 0007; Season 01 Episode 07; May 1, 2018
Our second episode on the IEP and 504 Plan processes. Seeking the legally required supports for children in our K12 system can be challenging. What can you request? How do you ensure a school provides the resources necessary for a student?
Transcript (lightly edited)
Hello, this is The Autistic Me Podcast.
I’m Christopher Scott Wyatt, and today I’m talking with Lu Randall, Executive Director of the Autism Connection of PA. For more information about the Autism Connection, you can go to AutismOfPA.org.
We’re talking today about education, following up on our first episode in this series.
One of the things that we should consider is that students in the K-12 setting, not the university setting or the college setting but in K-12, are often offered 504 or IEP plans, the IEP being an Individual Education Program. The importance of these for parents is that they need to know what’s going on in the classroom for their child and what supports the child is or is not receiving.
Scott: When you talk to schools, do you emphasize parental involvement in the [00:01:00] development of the specialized education plans?
Lu Randall: I think every parent of any kid is the expert on that person. That isn’t always a positive statement and they might know a lot of what is real negative for that kid, but generally, parents are really strong advocates in a positive way and beginning with the evaluation piece. What we try to do is educate parents more about that.
We do have, and I can get this to people, we worked on a statewide plan about teaching people about what their rights are in the evaluation phase or revaluation. What you get in an evaluation part is sometimes a checklist from the school or self kind of a home observation of the child. And so what people think is that that’s their piece.
What the reality is… Here’s your piece:
You can send video, you can write letters, you can get information from anybody that knows that child at all to add into that first [00:02:00] evaluation, which I think is critical, or to any other reevaluation along the life of the child in public school.
People need to know they have rights and the right to giving more information is definitely the right of the parent or the guardian, because right now we have a lot of grandparents raising kids.
Scott: We were not told, I know for our foster children, that we could provide additional information and we actually had to get some backing with a letter from a lawyer. Do you think that the schools and teachers are unaware of these rights or that they don’t want to share that we as parents and autistic individuals have these rights?
Lu Randall: I think the special education law of Pennsylvania is 128 pages long, so I’m not sure that any teacher has read the entire thing. We send that out to parents. We might highlight certain parts.
We either give it electronically… again, if they’re not a person who has access to a printer [00:03:00] or computer, then we send them the whole thing. And we tell people, “Go to your meeting. Keep that on top of your pile of books. Keep it marked up with Post-Its. We can help you find the part that relates to the problems you’re having right now.” Which is why people call us, and they get better meetings happening around them because when people know, you know, you’re rights you have more power and sometimes you have to open that up and show people because, no, I don’t think teachers necessarily all the time know the nuances of the law. Should they? Yes. Realistically, having gone through teacher education, there’s a lot more emphasis on pedagogy and, oh gosh, techniques and different kinds of creative approaches to fiction — like it’s not a lot about the law.
Scott: You said the Pennsylvania law is 128 pages.
Lu Randall: I believe so.
Scott: And I’m certain that coming from California and having lived in Minnesota that they’re equally [00:04:00] complex.
Lu Randall: Right. It’s federal law, right.
Scott: The challenge, then, for a parent is to know when we have the right to ask questions or seek supports. How engaged as a parent have to be to ensure that the plan is actually being implemented?
Lu Randall: Something just popped into my head. I will say, I’ve raised three sons into adulthood who had different kinds of medical needs and things like that who are independent now and they’re fine. The reason I say that is because there’s a lot of discrimination in the world and I’m just going to say that.
I think people should be as involved as they would be when their kid is a champion gymnast and how many hours do you put into these things when people are doing pleasant, positive, happy, bubbly things? Parenting is a job and a lot of us have more than one — one’s a paying job and one, this, is not. People need to know their [00:05:00] rights. And if you have a person in your house with needs — special needs, educational needs, or medical needs, because a lot of these things will overlap — that is a full-time job.
Scott: How would you encourage parents and teachers to have a positive working relationship on this because it’s so easy to become confrontational as a parent or as the person receiving special accommodations? You know, my child needs this thing and is not receiving it and sometimes the teachers not necessarily to blame but they are your first contact and they are the person you go to.
Lu Randall: Yeah, I think there’s a lot of hype about how adversarial schools could be and we will get so many phone calls, maybe this August, of parents of entering kindergartners that say, “I need an advocate. I need a lawyer. I need this. I need that.” And when we listen to what their fears are — and they’re justified to have fears because they’ve heard terrible things — I really want to ask them: “If you walk in with an advocate and nothing’s [00:06:00] wrong things will probably go wrong because people are going to think, ‘Why are you coming in with this, you know, this extra person?'”
I always think also that when we walk in with an advocate it assumes that we have an adversarial relationship and I don’t want to do that. Maybe walk in with your neighbor or your spouse or your relative or whatever to have a support person for you, but there are a lot of schools that are doing good stuff. Don’t walk in assuming that they’re not, because it sets off a really difficult relationship. But if you find yourself in a situation where things are going south or there’s a lot of negativity, definitely feel free to call an organization like us to get some support around that. And sometimes that’s support is literally, I will tell people, you know, go to a thrift shop and get a jacket. You’ll run like a business meeting. Walk in with an agenda. I don’t care if you just write that down in a notebook: take notes, bring a calendar, and at the end of the meeting you flip open your calendar and say, “When are we meeting [00:07:00] next?”
You don’t wait for other people to tell you what’s going to happen because your kids time in school is relatively short. You want to have more control over that. At the same time, I know as a parent I had to sit back and listen because people there know more than me and I had to figure out, I think it’s certain times, who I could trust and who I should be listening to because I know my kid, but I don’t have all the answers about what they may be needed to do and that goes from gifted education to people that have food allergies to you know, developmental differences.
Scott: You mentioned re-evaluation. If a child is on a 504 and has a severe disability or challenge and the parent believes that the child should receive an IEP, one of the things that Autism Connection explained to us as parents is that we can actually request re-evaluations. That seems like an [00:08:00] important step for parents — that admission that my child needs extra support and this is not always an easy thing to go to a school and say. How would you prepare a parent to go in and say, “My child is not doing well. We need to fix this. How can we collaborate and get an IEP?”
Lu Randall: The first thing we tell everybody is “Keep everything in writing.” I think what happens a lot of the time where — and how would you possibly know this — people have made a lot of phone calls, people have had a lot of meetings, there’s been a lot of talking over the counter to the principal at the at the office…. And nothing gets done.
You really need to write a letter to your principal, probably in that building most of the time. “My child has special needs. We need an IEP. I’d like to initiate the process for an evaluation.” Parents can do that.
A lot of times it’s a teacher that will let you know, because how would you know if this is [00:09:00] especially your eldest or your only child, you don’t always know how they’re stacking up mentally until somebody tells you that.
But their requests — everything should be in writing and that could be email. It could be a handwritten letter. Keep a copy! That starts the time ticking on the clock for people to follow up and do the evaluations which can take a little bit of time because a regular special education evaluation will involve the nurse, a speech therapist, a psychologist and I really prefer if that can happen during the school year because when you’re pulling your kid off of summer to meet with individuals, it’s a different kid than if it is going to have taken the bus to school that day and had deal with that kind of structured environment and then be tested — which would be ideal because that’s how they live.
Keeping everything in writing is the thing to do. And let’s just say, “I think my kid needs help but I’m not sure.” Then we evaluate and let the [00:10:00] data show you what needs to get done next.
Scott: One of the things that an educator said to us was, “You don’t want your child to get label.” And this surprised me because what you’re saying then is, “If you don’t have the label, you aren’t eligible for services.” But somehow the label was perceived as a negative by an educator.
Lu Randall: There’s stigma attached to all of this and educators are no different. Some people have tons of compassion and go way overboard and that’s a whole other kind of good set of circumstances. But special education records are sealed. Their confidential. They don’t impact your person if they go out to apply for a job. See, that’s all confidential, private information. The labels don’t stay forever if that’s not what the person chooses to identify themselves with after they leave school.
Scott: This is an important aspect. If a child is receiving speech therapy or occupational therapy under an IEP, this isn’t going to affect [00:11:00] the child when he or she is a junior in high school applying to colleges. This is not information that is disclosed.
Lu Randall: Right.
Scott: If they’ve received treatment for that they’ve overcome, or if they’ve learned a way to accommodate, this is not something that has to follow you if you choose not to accept a label beyond.
Lu Randall: Right. That’s true and what I was thinking when you said that is when a child receives speech therapy or OT or something when they’re younger and their brain is more easily rewired to pathways that work for them to help them find the word, help them point to the picture on their iPad that says their word for them, that’ll help him do better on their SATs later or where ever they’re going to be in life. It’s confidential information. It’s not a permanent label forever.
Scott: And do you think that teachers when they’re told that a student has a 504 or IEP, do you think that this new generation of teachers is aware that that’s not a stigma?
Lu Randall: I think it’s a lot better [00:12:00] now. Whenever I go out to talk to any groups, people, say under the age of 30, will raise their hands if I say, “Who knows somebody with autism?” They’ll say, “My ex-boyfriend was Autistic” or “Four kids in my class had this thing” and they’re just… Because of inclusion they are so much more accepting. And this is true like even at the police academy. If I go there and there are young officers which they are — you know, recruits are young! They’re so much more comfortable with talking about this stuff. That it’s a big — I’ve noticed as I’ve been teaching people professional development for 15 or 16 years — there’s a huge difference in comfort level and awareness. We’re starting at a much higher level when I’m talking about adaptations and accommodations than in the past.
Scott: One of the things I want to discuss is that even if you have a 504 or an IEP, the child transitioning into college or a university does not have those same rights. And so even if you do [00:13:00] obtain a very good IEP that helps your child prepare for college, the situation changes. Somehow we should help those children and young adults in high school transition. Maybe not off the IEP or the 504, but to prepare for the fact that it may not be the same after high school.
Lu Randall: Especially the IEP.
So the 504 I’m familiar with because I’ve worked with somebody in the past that had a severe food allergy that affected their life and their right to their medication. So this to me, I see that more as an ADA type of an accommodation thing versus the IEP which is educational.
But the IEP… I have seen people go to university and their IEP said that they could have three times the time on a test. In reality at a university setting if that test period is two hours, to say that they have the right to a six-hour test is probably not going to fly. You don’t have the same education rights, civil [00:14:00] rights.
We all have the right to education, K to 12. That’s a civil right in America. We don’t have the Civil Right to education in college. We just don’t. It’s just not the same ballgame. But people, maybe they are not aware of that. So certain accommodations are not provided at the university level. Maybe you can talk more about that.
Scott: And we need to prepare a parent for that, who’s the parent of a child in high. And you talk about this transition period. How important is that, to incorporate transition into the 504 or IEP?
Lu Randall: Well, I think it’s — and I always think about every other person graduating from high school and going to college, and that some of the transition if a person has much less disability, that transition is like: You’re responsible to do your laundry or I guess find somebody to do it for you, which happens, but there’s a big transition in just being independent and taking care of yourself. So if you have more needs and those are around [00:15:00] disability needs, you’ve either got to have staff that helps you do that or find a way to do it yourself. So laundry is a very simplistic example. But if it’s that you need to be able to find your classrooms across a bigger campus when you have a hard time organizing numbers and room numbers and things like that, which to me applies to work later on. If that’s a difficulty you have, you’ve got to either find a way to cope with it or find a place that has one building and you know is a much smaller setting that you can work and live in.
Scott: So in summary for this episode the lessons we want to take away for parents are: You should talk to teachers first in a non-confrontational way to discuss the possibility of an evaluation. You do have the right to seek a re-evaluation if you believe that you’re not getting the services you want. And you should be engaged [00:16:00] on an ongoing basis with the teacher, the principal, and the support providers in the K-12 setting.
Lu Randall: And all those conversations should be in writing, I think, too. And re-evals happen periodically according to federal law anyway, so you have the right to give all kinds of input to your first eval and the request that in writing, because they’re not always going to maybe pick your kid out of a classroom to tell you that you have that right. But keep it all in writing. And don’t assume an adversarial relationship if you’ve not been there yet.
Scott: I think that’s good advice. As a foster parent of two young daughters, the more you can work with a teacher as an ally and support that teacher’s efforts, the more likely the teacher is to also advocate for you and your child.
Lu Randall: Right. I always go in and say, “Look, your job will be easier if…” And it’s kind of… Because it’s true. They’ve got a lot of other things going on and we want better outcomes for everybody including the education of your child.
Scott: You’ve been listening to The Autistic Me Podcast.
I’m Christopher Scott Wyatt, and I look forward to our next meeting.
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