Battle Fatigue: The Fight for Inclusive Education with Dr. Priya Lalvani

Priya Lalvani: The irony of segregating children in order to allow them to belong is absurd, right? We’re going to remove the kid from their natural place of belonging because they don’t belong. And so we’re going to segregate kids to help them find community. And never once was there a discussion about, well, how can we make those places, places of belonging?

You’re removing the child who doesn’t belong instead of addressing why the space is rendered that way. And what could be done to change that? That conversation was never had.

Tim Villegas: Hello friends. Welcome to Think Inclusive. I am Tim Villegas, and that was our amazing guest this week, Dr. Priya Lalvani. She’s a professor of disability studies at Montclair State University and coordinates their inclusive education graduate programs. She has a PhD in developmental psychology from CUNY and a Master’s of Arts in Special Education from Columbia.

Priya has spent 14 years working with young adults with disabilities in New York City. Her research shines a light on ableism and the segregation of students with disabilities in schools. She’s published over 20 research articles and co-authored the book, Undoing Ableism. We’re thrilled to have you here, whether you’re listening to or watching Think Inclusive, MCIE’s podcast that brings you conversations with people doing the work of inclusion in the real world.

In today’s episode, Priya shares some powerful stories about how parents navigate the special education system and become fierce advocates for inclusive education. We’ll also take a trip down memory lane exploring the history of parent advocacy in special education.

Priya sheds light on the resistance parents face when pushing for inclusive education and the disparities based on a family’s privilege. One of the most striking parts of our conversation is Priya’s recent research on battle fatigue among parents. She explains the toll that constant advocacy takes and the institutional ableism they encounter.

But don’t worry, we don’t just admire the problem. Priya also offers practical solutions and policy recommendations to improve the system and better support inclusive education. Now, before we get into my conversation with Priya, I wanted to tell you about our sponsor for this season, IXL. IXL is a fantastic all-in-one platform designed for K-12 education.

It helps boost student achievement, empowers teachers, and tracks progress seamlessly. Imagine having a tool that simplifies what usually requires dozens of different resources. Well, that’s IXL. As students practice, IXL adapts to their individual needs, ensuring they’re both supported and challenged. Plus, each learner receives a personalized learning plan to effectively address any knowledge gaps.

Interested in learning more? Visit ixl.com/inclusive. That’s ixl.com/inclusive. All right, after a short break, we’ll jump into my conversation with Dr. Priya Lalvani. Catch you on the other side.

Tim Villegas: Dr. Priya Lalvani, welcome to the Think Inclusive Podcast.

Priya Lalvani: Thank you. So excited to be here.

Tim Villegas: Priya, I know you as a researcher, and so I’d like to start there if that’s okay. From what I know about you, you’ve been conducting research for over a decade with parents of children with disabilities. So, you’ve been conducting your research with parents of children with disabilities and their experiences with IEPs. Is there a common theme or anything that jumps out?

Priya Lalvani: Sure. I’d love to talk about that. So, I have been conducting research starting from when I was a doctoral student, actually two decades ago. My beginnings were with mothers of children with Down syndrome and their experience of the birth of their child in the context of a medical discourse, a societal discourse that devalues their children.

I was interested in how these mothers constructed their identities as mothers in the face of this barrage of negative information they were getting. Over the first decade, I got increasingly interested in parents and their educational experiences navigating the special ed system. I realized that if we want to understand parents of children with disabilities, this is a big part of their parenting experience. So, I became very interested in that.

I’ve done a few studies with parents on that. One thing that hits you is that this is a group of parents who identify as advocates. Advocacy on behalf of their children to get specific services, resources, and educational placements is needed. It’s not a choice; it will be required, and you better get tough pretty quick.

I want to put that in a historical context. Parent advocacy has a rich history. In the world of special ed, families of children with disabilities worked alongside disabled activists in the fifties and sixties to lobby for their children to have rights to access public education. Those efforts led to the passing of public law 94-142, which is now IDEA.

It’s been 50 years since then, but parents of children with disabilities continue to view themselves in the same way. They believe that without their advocacy, their children will not get the services or access to their rights. Parents seeking inclusive education, in particular, experience a great deal of institutional resistance. Their efforts to get inclusive services or placements for their children are often blocked or denied.

Priya Lalvani: When you look at this group disaggregated by ethnicity and socioeconomic status, the story looks even more different. There is a disproportionate placement of students of color in segregated classrooms. The experiences of those families, when you talk to them, look very different.

When you disaggregate by disability type, parents who have kids with certain disability labels or classifications—such as intellectual disability, multiple disabilities, autism, non-verbal, non-speaking students, and any child or student who needs extensive levels of support in schools—find their children disproportionately placed in self-contained or segregated placements. The experiences of those parents are very unique and interesting.

I’ve moved from the broad to this narrow group that I’m very interested in: families of children with extensive support needs or certain disabilities associated with high levels of support, and their experiences of navigating inclusive education.

If you are asking me what is a common theme, inclusive education is parent-driven almost 50 years after the passing of laws that explicitly outline a preference for students with disabilities to be learning alongside their non-disabled peers. This is codified in our federal law. Almost 50 years after that, pretty much all, if not most, of the literature shows us that inclusive education continues to be parent-driven.

Tim Villegas: Hmm. So we have a law that, if it wasn’t for parents, we wouldn’t have. Right. And in that law, the assumption or the spirit of IDEA is for inclusive education. Yet nearly 50 years since the passage of that law, it seems, or there’s certainly an argument to be made, that the biggest advocates for inclusive education are not educators, but parents.

Priya Lalvani: I think it’s fair to say that. I should just correct one thing, Tim. I would be remiss to say that we have the laws because of the efforts of parents alone. Parents did not act alone. They worked alongside disabled activists. That should be honored.

Tim Villegas: Yeah, absolutely.

Priya Lalvani: But yes, that is exactly right.

Tim Villegas: While you were talking, I was thinking about a subset of parents. You have a group of parents who have children with disabilities, and a smaller subset of that group are parents of children with extensive support needs. An even smaller subset of that are parents with extensive support needs who are advocating for inclusive education. When you take the whole group of parents, not everyone is as focused or as passionate, even though the law assumes that a learner should be included in general education. Not everyone is as focused or passionate about advocating for inclusive practices. So given that, it’s really not a question, it’s more of a comment.

Priya Lalvani: Yeah. I encounter this idea a lot. You know, you’re saying inclusive education this and that, but a lot of parents prefer their kids to be in self-contained classrooms. I get that. I know dozens of parents who have made that decision. I think it should be made clear that it’s not the parents, or rather, how can I say this? I understand why parents make difficult choices that they make, but we have to ask ourselves, in what context was that choice made?

First of all, “choice” should be in quotation marks because it’s put out there as a choice that some parents make, but a choice is only a choice when it’s an informed choice. I like to ask, and I do in my work, if parents are fully informed that the kinds of things they desire for their children can actually be made available in general education classrooms. A great number of parents of this subgroup, particularly when they have children with intellectual disabilities or autism, are not fully informed. So of course they would make the choices they make if they don’t know.

Why would a parent know? We don’t have our children and go to a special ed class to learn these things. A parent is not obliged to know these things. An educator is obliged to know these things and to educate the parent about what is available, what is mandated by law, and what are the research benefits of inclusive education.

Tim Villegas: Right. That’s a great point. Being a former special educator and having been in many IEP meetings, research about inclusive education rarely gets brought up unless it is by the parent. The parent might say, “Well, the research says that outcomes are better, more instructional minutes are better,” and all these facts are set at a meeting. Typically, that is met with, “Well, thank you for that information.”

Priya Lalvani: Bingo. I have been to dozens, if not hundreds, of IEP meetings. I should also say to folks listening that I’m also a parent of a young woman, now 22, who has Down syndrome and was in general education classrooms since she was two and a half. I’ve been on the other side of that IEP table as a parent, but I’ve also been on the other side as a parent support for dozens, if not over a hundred, other families and have interviewed many families. You’re right, Tim. Not rarely, but never once has an educator ever corrected a parent and said, “Let me tell you why inclusive education would actually be a better choice for your child.”

Going back to your issue of parents choosing, it’s not just that a parent is making a choice based not on all the information we have about what inclusive education even is. The second thing is that a parent might say, “Well, we tried it. I really wanted it.” You’ve probably heard this sentiment a hundred times: “We really tried it, but it didn’t work. And I want out.” I get it. I sympathize. I’m a mom. I get it.

Tim Villegas: Yeah.

Priya Lalvani: But is it that inclusive education didn’t work? Or is it that inclusive education was never really tried? You know, putting a kid in a general education room and saying that you tried inclusive education, but you didn’t give them all the supports, all the access technologies, all the means to communicate, all the supports to make friendships, all the content and the curriculum modified. If you didn’t do all those things and you put them in there, and then three months later you said, “See, we tried it,” and the child legitimately is saying, “I’m having a terrible time here.” So that’s reason number two.

And the third thing, and I’ll talk about that a little bit more, Tim, because I’m hoping you’ll ask me about my latest research, is that not only do parents not know about the benefits of inclusive education, but in fact, they are explicitly informed by their child study teams that self-contained classrooms and environments are actually better. So, what parent in their right mind who doesn’t know otherwise would not trust the information given by a trusted expert, supposedly an expert in the field?

Tim Villegas: Right? Yeah. And you know, Priya, that was my experience as well as an educator, being the expert and being on teams where the recommendation is a segregated placement. I don’t know if your research focused on families, so I don’t know if you had a chance to talk to educators and the reasons why they felt or perceived that a segregated placement was better. My impression is that when educators say this, they really believe it. It’s not that you have all these educators who are trying to derail a student’s trajectory. They really believe that it is better despite the evidence. But still, they believe it. Has that been your experience as well?

Priya Lalvani: It’s been a hundred percent. I am a researcher that works with families, but it should also be noted that I’m a teacher educator. I spend all my days with teachers. I’m a professor of inclusive education, and I work with in-service teachers. So I have a ready flow of access to teachers as part of my life. I’ve also done a piece on teachers’ perceptions of inclusive education some years ago. To your question, I was indeed exactly interested in what you were talking about. I wanted to understand because I know that the vast majority of teachers are well-meaning and great. I spend my days with them, and these are genuinely terrific people. When it comes down to these beliefs, I wanted to understand. I did a study on that and had a sample of general education and special education teachers, and that is exactly what I found.

Every last one of them said that they were all for inclusive education. So that’s interesting. Wait a minute. That’s the start of the study. I’m all for it. I did an analysis of the discourse, and it was like, “All in, onboard, a hundred percent. All means all. I’m in for all kids.” Okay. As the interviews unfold, if I stopped there, and I’m a qualitative researcher, but if I was a quantitative researcher and just had a survey and asked them that, the results of that study—and there are studies like that—would say a hundred percent of teachers support inclusive education for all kids, which would have been fake data, as we like to say in the research world. Recent statistics show that 42% of all data is fake. Get it?

Tim Villegas: Oh, no, I did not know that. No, that’s a joke. 42.

Priya Lalvani: Made that up, Tim. Get that.

Tim Villegas: That’s hilarious.

Priya Lalvani: Right? Recent statistics show that 42% of all statistics are fake. So if I had stopped that study right there, the findings would legitimately have been a hundred percent of teachers in New Jersey that were interviewed believed that inclusive education was for all kids. But I didn’t stop there. I wanted to probe. And so I did. I asked them, “What about this? And what about that? And what about this? And what about that?” As we are talking, it turns out, well, they didn’t mean this kid. They didn’t mean that kid. They certainly didn’t mean kids with autism. They didn’t mean kids with Down syndrome. They definitely didn’t mean intellectual disability. Oh, by the way, they didn’t mean any behavioral challenges. They also didn’t mean non-speaking kids. You get the idea.

Tim Villegas: Yeah, yeah.

Priya Lalvani: So it took, and so yeah, genuinely, genuinely believed from the goodness of what we believe that for those kids, a self-contained classroom is, of course, the most logical. So all means all except for those that are not in the all.

Tim Villegas: Yeah. Oh, well. I do want to get to your research, the battle fatigue research, but I think this is a really interesting little rabbit hole we’re going down because another thing I hear is that all means all, and for those kids, for the other kids, for the kids with autism, intellectual disability, that inclusion for them means a segregated placement. I don’t know if it’s just, I mean, we’re just kind of playing around with words, right? But I find that argument more and more, that people are making that more and more. Like inclusion for everyone and inclusion for you means a special segregated placement. And inclusion for you means a general education classroom. And inclusion for you means…

Priya Lalvani: Yeah.

Tim Villegas: The word inclusion just doesn’t mean anything anymore.

Priya Lalvani: Exactly. That’s a really interesting thing you pointed out, and I do see that. But I think you’re right. If we are using the word in that way, then of course we believe in everyone being included. In fact, I’m thinking now as you mention it, I was in an IEP meeting like three months ago with a parent, and I did say that. You’ve just reminded me of this. I said, “But you said that her kid could get the inclusion.” And they said, “Yes, we mean we go out in the community. We take them for walks, we take them to the parks, anything but letting them interact with the non-disabled kids at their own school.” Like, we have to go to some other park in town instead of just letting them have recess at the same time.

Tim Villegas: Oh yeah. That’s wild. That is wild. Yes. Okay. There’s a lot to discuss and unpack about that. But I do want to get to one of your recent research articles, and it’s called “Battle Fatigue: Parents, Institutionalized Ableism, and The Fight for Inclusive Education.” Can you talk about what led you to do this particular research? And then, well, you talk about whatever you want, but I know that in the article you talk about barriers, so I’ll just let you take it from here.

Priya Lalvani: Okay. Thank you. So, what led me to do the research briefly is all the things we’ve talked about. I’ve been doing interviews with families for a long time, but as I said before, I became increasingly interested in a particular subset of families. Whereas before, I’ve certainly done research with the full breadth of all kinds of experiences, my interest and passion actually is families of children with disabilities.

I had done similar research about 10 years ago about IEP experiences, not with this small subset of families. I found that parents felt that without their advocacy, their children would not be getting the services or the placements they had wanted for their children. But I started to think in the last couple of years, a decade has gone by since I did that. People say to me, “Yeah, well, things are changing, and now we have inclusive education everywhere.” Things have changed in New Jersey.

I was particularly interested because I reside in New Jersey, work in New Jersey, and train New Jersey’s teachers. New Jersey ranks particularly poorly on its record on least restrictive environment and inclusive education. As a nation, we’re not doing that great, but New Jersey lags further behind the national average. In fact, we rank number 50 out of 50 states. I’ll give you a little handy statistic, which I like to keep in mind.

Tim Villegas: Okay. Oh yeah. We love statistics. Especially the fake ones.

Priya Lalvani: Okay. Yeah, exactly. Well, this one is not fake though. This one is from the US Department of Education page. They have yearly reports. Currently, we have about 66% of our students in inclusive education, which is defined as 80% or more of their time in a general ed classroom. The national average is about 66% of K-12 students being educated inclusively by that definition. But in New Jersey, it’s only 45%, so there’s a big difference between the national average, which is also not very good if you ask me.

Tim Villegas: No, it’s not. You guys are doing a little bit better. I just looked up Maryland right before we got on.

Priya Lalvani: I should know this. I feel like it’s in the upper seventies.

Tim Villegas: It’s 70 right now. Lower seventies.

Priya Lalvani: Wow. I’m jealous. We are at 45. So, your question about my research, I was interested in how far we have come as a state. I’m very invested in New Jersey and inclusive education, and that led me to redo the research. I did it with my colleague, Dr. Eileen Osieja. This time, we zoned in on a particular group of parents who specifically sought or wanted inclusive education. I wanted to remove, without any judgment, parents who themselves had asked for self-contained placement for whatever reason. I get it. I wanted to see what happens if a parent is only asking for what is in fact that child’s entitlement, not for something that is not federally required. That was interesting. If a parent simply says, “This is what the federal law states, this is all I’m asking for,” what happens to them? What is the story, especially if their child is classified under intellectual disability, has a condition like Down syndrome, is autistic, is nonverbal, or has extensive support needs?

So, those were the parents we recruited. I’ll give you eight of the main findings if I may. The first thing that comes sweepingly across the study is that every parent, if not every, then all but one, said that a general education environment was never a serious consideration for their child unless they brought it up. Let’s digest that in the context of a federal law that explicitly states that a general education environment is the first consideration and where the discussion must begin. The law states that a student can only be removed from a regular classroom if education in that classroom cannot be achieved even with the use of supplementary aids and services.

Tim Villegas: Mm-hmm.

Priya Lalvani: So, I’m juxtaposing this so that our listeners can understand this is what the law is saying. But here, every parent says that never in the beginning was it suggested for their child with extensive support needs. If it was mentioned, it was mentioned in the context of a very generic “general education classroom cannot be considered because it is not appropriate for your child right now.”

Tim Villegas: Mm-hmm.

Priya Lalvani: It’s sort of a sweeping boom right there. Their initial placements, the vast majority of the parents said, even coming in at preschool, you’ve got a 3-year-old child who we’ve never tried, who’s never set foot in a general education classroom with their peers. We’re being told this child is going to start out in a self-contained classroom. That was one extremely broad finding. Many parents, if not most, said that they brought up inclusive education themselves. They had to initiate the conversation. They had to say, “Well, I’ve heard about this.” Some of them didn’t bring it up at first. They brought it up four years later. Each one had a different story. A great number of their children started out and had spent many years in self-contained classrooms. Parents had heard about it through the buzz. They went to a conference, they spoke to a friend, they learned about it, and they brought it up at an IEP meeting.

To your earlier point, they’re talking about, “Well, I’ve heard about this research and the benefits.” Then the findings show that when they requested it, that’s when the roadblock starts to hit. They are told, “It’s great that you’ve heard about this stuff, but it’s not for your kid.” Some parents left it at that. Some parents asked for reasoning because they had learned that a reason was supposed to be documented on the IEP. That’s the really interesting part of this study. They were informed of any number of things ranging from, “The general education classroom is too loud, too vague, too overwhelming, too crowded, too noisy, too fast, too academic. It’s just not going to be a good idea.”

Tim Villegas: Yep.

Priya Lalvani: Other parents were told, so there were different categories in the paper. I outlined it much better than I might be doing right now, but I’ve laid out the different categories of reasoning. Another category was the child’s characteristics. So, it’s either the characteristic of the general ed class—it’s too loud, it’s too noisy, it’s too fast.

Priya Lalvani: I don’t know why any kid goes there, quite frankly. It sounds like an awful place. Nobody can learn there. But the second category was the characteristic of the child. The child isn’t ready because they don’t speak, they don’t write, they’re not potty trained, or they’re not academically able to keep up with the curriculum. They supposedly don’t have prerequisite skills. Their behaviors, their non-speaking make them not a candidate for the general education classroom.

So, there’s this idea in IDEA, if that’s not a funny way to say it, that the burden of proof lies on the district to explain why a child is removed from a classroom. In other words, it is assumed that a child with a disability is in a general education classroom. The burden of proof, like in our legal system, is upon the person making the case to remove the child. The burden of proof is never on anyone to make a case for why a child should be included.

The study shows that every one of these parents said that at some point they were made to believe that they had to make a case. Some parents made recordings of their child at home. Some parents wrote elaborate narratives about what their child could do and why they thought inclusive education was beneficial. I’m like, why are we expecting parents to be doing these things?

Another disturbing finding was that some parents were told that their children would not make friends and would be teased or bullied or not fit in a general education class. They were told their child wouldn’t fit in there, but in a smaller, loving class, they would feel like they belong and find community. This is morally problematic because it plays right into our deepest fears as parents of children with disabilities. The idea that my child won’t have friends, that my child will be teased or bullied and not belong, hits at the core.

The irony of segregating children in order to allow them to belong is absurd. We’re going to remove the kid from their natural place of belonging because they don’t belong. So, we’re going to segregate kids to help them find community. Never once was there a discussion about how we can make those places places of belonging. You’re removing the child who doesn’t belong instead of addressing why the space is rendered that way and what could be done to change that. That conversation was never had.

You’ve heard of real estate steering practices. I’ve coined the concept of the steering practices of special education. This comes up a lot, not just in my research, but across the literature where parents are told the benefits of self-contained classrooms and the general ed classroom is downplayed. In this study, every single parent said that the bells and whistles of the self-contained classrooms were outlined to them in great detail. They were explicitly told that in the self-contained class, it’s a beautiful haven with only five kids, all these teachers, and so much support. You can have an individualized education here for any child. You can have materials that are correct for them and a special education teacher. The general education classroom, remember, is too loud, too fast-paced, and your kid’s going to get lost. It’s almost like self-contained classrooms were marketed and packaged. I use those words because parents used them. I do a discourse analysis in my studies and look at the words that come up. Words like “sold” came up a lot. They sold it to me and I bought it. This line came up. So, what did I know? They sold it to me. I was sold, I bought it. That’s why I use the language of packaging and marketing of certain spaces as better than others.

Those are some of the key findings that came out. I want to make sure that listeners understand that parents are not a passive group. It sounds like they were barraged by this information, but in fact, the parents in my study pushed back. Most of them, if not all, at some point attempted to push back. But here is where it becomes problematic because pushing back requires a certain level of privilege. Who gets to push back? Which parent? The discrepancies in family backgrounds, circumstances, language, families of linguistically diverse backgrounds, those from lower socioeconomic backgrounds, those who simply do not have the ability to take on an institutional system. Pushback becomes problematic. While many pushed back and some were successful, not all were in getting their children out of a self-contained space and into an inclusive one. To my earlier point about inclusive education being parent-driven, some, the last I checked, are still struggling and engaged in this so-called fight to get their children included.

Tim Villegas: This is heartbreaking, honestly. As you were giving all those reasons, specific instances came to mind of families when I was in the school system. Every single example you gave, I thought of somebody. I just want to bring up what you talked about, about families having a certain amount of privilege to be even able to fight. I’m specifically thinking about those families who speak a language other than English and how those steering practices, like you said, are so compelling. For a family who is already at a disadvantage because information is going through an interpreter or maybe even not an interpreter at all, maybe it’s a sibling that can speak both languages. It’s so deceptive that the family will just go along with it. If there’s no one else saying anything, no educator, nobody else giving another option to provide services or a placement, then you could have a hundred IEPs like that and all of them would go to a segregated and self-contained environment.

Priya Lalvani: Exactly. For that reason, parent advocacy itself should be problematized. I invite parents to think about the ways in which our parent advocacy actually hurts the system a little bit because of what we just said. It’s only certain parents who are even able to be at the table to advocate. The parents in my study, the kinds of things they do, is jaw-dropping. These parents talked about going to conferences, joining organizations, going to workshops to learn about special ed law.

Priya Lalvani: I had parents in my study who joined nonprofit organizations and took leadership roles. One established a new nonprofit organization to educate others. Four parents in my study went back to grad school just to be able to be a better advocate. Twenty-two of them hired a special ed advocate. Nine of them hired an attorney. Five of them relocated their family to a different district. Look at all these things that they’re doing that require some level of privilege to be able to do. You need time, energy, and it’s exhausting. You also need a little bit of capital to do these things.

When the parents who are able to do these things do them, it leaves the kids of those who cannot further marginalized. We’re actually feeding into the inequalities in a way. The bigger issue is when we deal with the situation on a case-by-case level, we leave the system unchanged. We are just fishing kids out of the water one by one. I implicate myself in the problem of advocacy because when we are metaphorically fishing a child out of the water one by one, we’re not dealing with the person who’s throwing them into the water in the first place.

Tim Villegas: Yeah.

Priya Lalvani: I saw that over and over in my study. These parents were invested in trying to get access for their child to an inclusive setting.

Tim Villegas: Priya, you used the words “battle” and “fight” in relation to parents and inclusive education. It’s the title of your research. I remember inviting a parent and a student to speak to educators at a school I was supporting. This learner was on the autism spectrum. He told his story about being included, and the parent talked about fighting for inclusive education. At the end, one of my special education supervisors came to me and said, “That was great. We really enjoyed having this student talk about his experience. But did they really have to say ‘fight’? It sounds so combative and that’s not the message we want to send.” So, I’ll ask you, why use those words? Is there a reason for those particular words in this discussion?

Priya Lalvani: Yeah. Thanks, Tim. I also get asked that. Several of my pieces have the word “fight” or “battle” in them. I just want to say outright, it is not my word. As a researcher, I try to bring the essence of my participants to the forefront. If you do an analysis of words used in parent narratives as they talk about their experiences with inclusive ed or navigating special education, battle-related metaphors are extremely prolific in their stories across all narratives. You find words like, “We brought out the guns,” “We had to put on our armor,” “We’re getting ready for battle,” “Bring on the war page.” Parents don’t want it to be a fight. They experience it as battle fatigue. They are tired, they are exhausted, they’ve had to take time off work. I had parents in my study who’ve had to take leave in order to engage in this. They don’t want to fight, but I would be remiss not to put out there that this is how it is being experienced.

Tim Villegas: Yeah. And it shouldn’t be that way.

Priya Lalvani: Absolutely not. Especially since what they are battling for was already won in 1975. The battle was won.

Tim Villegas: The battle was won. We need to send everyone home.

Priya Lalvani: Oh my goodness. Okay. This has been such a fascinating and enlightening discussion. I would like to turn to finding some solutions for our audience because I know the people that listen to this podcast are passionately involved with advocating for inclusive education, whether they are educators, family members, or both. So, what, in your perspective, are some things that we can do that are solution-oriented towards this discussion?

Priya Lalvani: The biggest problem that I see, and I work with teachers and we have this discussion, is that there is gatekeeping going on at the child study team level, at an IEP. My teachers tell me as a teacher, there’s only so much I can do, but this term “gatekeeper” has come up a lot. If you are an administrator listening or a school professional, I think we need more professional development for child study teams. I’m not sure how much professional development on inclusive education and particularly inclusive education as a civil right is being provided to child study team folks. There needs to be more training about IDEA and its mandates. The removal of a child should only be considered when all supplementary aids and services have been considered and exhausted. Maybe some more training on that.

Another thing that parents and educators alike need to understand is that there is no readiness criteria for inclusive education. If you’re a parent listening, you need to know that you don’t need to make a case. Your child does not have to demonstrate readiness to be in his or her natural community of peers. We need more professional development for educators to understand that there is no such thing and that assessments are conducted as part of the process. Assessments are only for the purpose of understanding the child and how we can best support the child. The discussion should be, “How can we support this child in a general education classroom?” Instead, assessments are being used as a tool to see whether the child can be in an inclusive setting.

Tim Villegas: Or which program would be the most appropriate. Let me give you an example. I know educators out there will resonate with this. I’m going to be careful here because I’m not trying to call out anybody.

Tim Villegas: I know for sure that there are educators in school systems who use rubrics to help them. Maybe rubrics isn’t a good word. It’s more like a collection of assessments and data that are put together in a way so that the school team can say, “Okay, based on their educational, psychological evaluation, based on their behavioral observation, based on all these different criteria, a small group would be the most appropriate.” They have some sort of tool, a school team will use some sort of tool, to help. It’s supposed to be so that the team can help make a decision. I remember the discussion in my previous roles was like, “Well, if we have a data tool that recommends this placement over another placement, then it’s supposed to take the emotion out of the decision.”

Priya Lalvani: Yeah.

Tim Villegas: I get the look on your face. Hopefully, if you’re watching on YouTube, you’ll see it. But it’s wild. School teams that already have the steering practices, like you said, that already have autism programs, intellectual disability programs, behavior programs, it’s baked into the system. You have a meeting and you’re like, “Okay, where does this kid go?” If the parents have the knowledge, the capacity, the capital, if they bring along a lawyer, if they bring along an advocate and they are advocating for inclusive education, maybe they get it.

Priya Lalvani: Yeah.

Tim Villegas: But for everyone else, autism program, behavior program, ID program, here you go. “Your child is best served in blah, blah, blah.”

Priya Lalvani: Yeah. And it’s framed as if it’s some sort of scientific calculation. What’s even more damaging is that it’s presented as if it’s some kind of science that your child who is non-speaking should be in a room with other non-speaking kids. I don’t know who came up with that idea.

Tim Villegas: I don’t know.

Priya Lalvani: And then they’re clustered by disability type. But you know what else is baked into the system, Tim? Ableism. It’s not only baked into the system, it’s baked into the law. IDEA, as progressive as it was at the time, had progressive intent and was a landmark law that gave students access to education they didn’t have before at all. However, many disability rights folks have critiqued the law itself and pointed out that it was written in a way with the loopholes baked in.

Tim Villegas: Mm-hmm.

Priya Lalvani: AKA, the LRE stipulation.

Tim Villegas: Yeah.

Priya Lalvani: The LRE stipulation is the legal loophole that legitimizes state-sanctioned segregation of children with disabilities. No other group of children in our country has state-sanctioned segregation anymore, though we know that children are still segregated by race and socioeconomic status informally. But it is not a sanctioned segregation.

Tim Villegas: Yeah.

Priya Lalvani: Only students with disabilities are the group remaining whose segregation is legitimized by federal law because LRE is basically a device that is not asking whether kids can be segregated. It’s asking what level of segregation is appropriate for each child, and that is problematic.

Tim Villegas: Absolutely.

Priya Lalvani: There are places that have done away with that. Italy, for example, completely did away with any such thing and rehauled their laws in the seventies and went for a fully inclusive system without any of this gradation in place. Italy currently has a 98 to 99% fully inclusive system.

Tim Villegas: Yes. I don’t remember the guest, but we did talk about Italy’s system sometime. I don’t know exactly when. I had a thought… Oh, I know what it was. So what I’m hearing you say is, I’ve asked this question a number of times to different guests about what we need to do with the law. Does the law actually need to be reformed? Is it just a matter of us actually holding states accountable to follow the law? In your view, what should happen? Do we need another reauthorization to really focus on this LRE concept?

Priya Lalvani: You’re asking me, and yes, my answer is yes. It is not just my answer, but there are a number of folks who are working toward this area of a radical restructuring as Italy did of its law. Of course, that is not an easy task, nor do I think that’s going to happen easily or anytime soon. But the short answer is, yes, we need a radical restructuring. It can be done. It has been done before. First, it was radical to have the law, public law 94-142. Of course, we can hope. But yes, that does need to happen. We need to get rid of a deeply ableist stipulation of separate but equal baked into our law. That can happen as it has happened for other groups in our country.

Tim Villegas: Yeah.

Priya Lalvani: You were asking about solutions, and I want to make sure that I touch on some more practical things, not just these bigger issues. I think that a simple thing like policy change or policy directives at the district level could help. For example, what if at IEP meetings, there was a directive where a parent was made aware of what supplementary aids and services are? What is the exhaustive list of all things that can be considered in a general ed classroom? That would have to be a discussion at an IEP meeting and signed. Something as practical as that, something as practical as all parents being given clear information about inclusive education, its benefits for all kids, the research, including for children with extensive support needs, intellectual disabilities, and so forth. They need to understand that it is indeed available. The vast majority of the group of parents that I’ve spoken to have said they did not know in the beginning that it was even a consideration for their child. Those kinds of policy directives could actually make a difference.

Tim Villegas: Yeah. Well, Priya, this has been just an amazing conversation. Thank you so much for your time. Can I have you for just a couple more minutes so we can wrap up with the mystery question? I feel like we need something light.

Priya Lalvani: Okay. Yeah, I’m intrigued.

Tim Villegas: As I’m picking out the card, we’re going to make sure to put all the research article links and links to whatever you’d like.

Tim Villegas: Our listeners can engage with your other writings. I know you have a book, but we’ll put everything in the show notes. Just let me know what you want us to list. Does that sound good?

Priya Lalvani: Okay.

Tim Villegas: Here we go. You’re going to pick a question.

Priya Lalvani: Oh my God.

Tim Villegas: Okay, so these are all pre-screened questions. I picked all the good ones out, but we can always veto any question if it’s no good. Here we go. This is an easy one, maybe. Do you have a favorite thing you do for a girls’ or guys’ night out? Basically, what do you do for fun?

Priya Lalvani: I do need a girls’ night out, and I do sometimes have girls’ nights out. I don’t do a lot of fancy things. I just like hanging out with my friends, chatting, and talking. I mean, I’m going to sound like a bit of a nerd, but I like to read. In fact, we like to joke that my husband’s pickup line was, “Do you read?” It was the most sexy thing anyone could have said to me. I just love being with my friends. A fun thing we would do is get together, have a glass or bottle of wine, and talk.

Tim Villegas: Yeah. I recently had some friends over to watch a football game. I like sports and typically watch them by myself. A couple of weeks ago, there was a Thursday night football game with the Atlanta Falcons. I live in the Atlanta area. I asked my wife if I could have some friends over to watch the game, and she said yes. I texted about 10 people, figuring only one or two would say yes. All of them said yes. So, I had like 10 people coming over on Thursday night to watch this football game. My wife asked if we had enough food, so we ordered pizza. We had a bunch of guys over, and it was a great game. The Falcons won at the very end. We were all celebrating, and my wife was videotaping us rejoicing. It’s just fun getting together with other people.

Priya Lalvani: That’s it. I agree. Without the sports, I don’t do that, but to me, just spending an evening with my girlfriends, huddled with a bottle of wine on the porch, is literally the best thing I can think of.

Tim Villegas: That’s great. I hope everyone who’s listening is able to find some time with friends and enjoy each other’s company. Thanks to Dr. Priya Lalvani for spending some time with us on the Think Inclusive Podcast. Thank you so much.

Priya Lalvani: Thank you so much. It was actually super fun talking to you. I was a little anxious at first, but this was great. Thank you.

Tim Villegas: That’s a wrap for this episode of Think Inclusive. Now let’s roll the credits. Think Inclusive is brought to you by the Maryland Coalition for Inclusive Education. I’m Tim Villegas, and I handle the writing, editing, design, mixing, and mastering. Our original music is by Miles Kredich, and we have additional tunes by Melod.ie.

A big shout out to our sponsor IXL. Check them out at ixl.com/inclusive. We truly appreciate each and every one of you who tunes in. We’d love to hear how you’re using these episodes. Are they part of your teaching toolkit? Are you sharing them with a school administrator? Drop me a line at tvillegas@mcie.org and let me know. That’s T-V-I-L-L-E-G-A-S at M-C-I-E dot O-R-G. And hey, if you are still with us this far into the episode, it probably means that you love Think Inclusive and the work that MCIE is doing. So can I ask a small favor? Help us keep the momentum going by donating at our website mcie.org. Just click the button at the top of the site and chip in $5, $10, $20. It would mean the world to us and the children in the schools and districts we partner with. Thanks for your time and attention. And remember, inclusion always works.

Download the complete and unedited transcript here.