Particular Schooling In Utah, United States

SALT LAKE CITY, Utah – Earlier this month, a group of moms went viral in a video asking the Jordan School District to reverse its decision to move the Life Skills and Peer Mentoring program from every high school in the district to just a few. An online petition garnered more than 54,000 signatures and the district ultimately reversed the decision.

Our colleague Debbie Worthen reported on this story and we wanted to dive a little deeper, looking at some of the history and context around special education in this country. First, we spoke with one of the moms who led that charge, Oakley Peterson. She has a first grader with Down’s Syndrome and says he has been to four different schools already.

Editor’s Note: the following interviews have been lightly edited for clarity and readability.

Oakley Peterson: “A friend of mine down the street has a typical son who’s the same age as Wells and they’re just like best buds. They really have gravitated towards each other. And her son kept asking her, “Why can’t Wells go to school with me?” She said, “I just didn’t have a good answer. What should I be telling him?”

And it’s always bothered me. And I’ve always thought, okay, maybe by like, third, fourth grade, maybe we can get him over to the school with his sister and brother. You know, and then when she started [asking that], it really hit me hard. Like, this is not okay. Why can’t my son go to school? Why can’t he be accepted in his community, where his brother and sister can the most basic right education, right? Why can’t my son enjoy that?

So we went to the district to a board meeting. We thanked them for the great job that they’re doing in these supported classrooms, and for the resources that have been so great for him and his development. But we asked them, we said, “Why? Can we collaborate? Could we come together and find a way to spread these kids so that they’re able to go in their community schools? Can we help bring resources, spread them out a little bit? Is there ways that we can collaborate together?” knowing very well that these things take a lot. We have to shift funding around, we’ve got to figure out how to shift teachers, like knowing that it would be a task, but asking how parents and community members, and we had parents with typical, mainstreamed kids also speak on behalf of why they want kids with different abilities at their kids schools. How can we spread that out?

So we went to the district looking for some steps towards progression. Two days later, we start getting emails and messages on Instagram, from parents who saw the board media and said, “Are you aware that our district is actually taking steps backwards, they’re pulling kids out of high schools with different abilities, and busing them to a completely different city to go to school?” So these are kids that their whole lives have been waiting for these experience, because we’ve always been told that once they get to the high school level, there is resources for all different abilities in our district at every single high school. So to hear that they’re stripping that away, taking steps backwards steps towards segregation, taking these kids and busing them to a different city altogether. [I felt] every emotion, like an anger like, enraging, devastating to think, Oh, wait, my son is actually never going to get this opportunity to be with his siblings in his community, the kids who protect him and love him on our street. He’ll never have that opportunity. So we were just devastated. And we said this is absolutely not okay.

We sent letters to everyone on the board to the superintendent, to the woman on over special education, who we knew made this decision and crickets. No response. There’s a big problem with districts not hearing community members and parents. And we just are simply not okay with that anymore. It’s not going to work. We don’t get to bulldoze the special needs families anymore. We’re done being shifted around.

We’ve got a friend with Down’s syndrome who graduated from Herriman High and in by the time he graduated high school had been to 13 different schools and living in one home. Would that be okay with any parent who has typical typically developing kids? Would you be okay? I mean, really think about that, would you be okay? If every year they said, Oh, no, your kid doesn’t get to go to school, because we’re going to send them over here this year. And the next year, we’re going to decide there’s not enough capacity over there. So we’re going to send them to this school over here, and then we’re going to decide, oh, we’re going to move the hub schools, we’re going to consolidate. Nobody would be okay with that. But this is like, what we’ve had to deal with for so long that people in our community have just gotten used to it. And I think that this was like, okay, we’re not just staying still and not making progress. We’re actually moving backwards. And we just said, this isn’t going to work. This is not okay. And everyone who we explain this to, I kept thinking someone was going to give me pushback. But everybody was like, you’re right. That’s not okay. People with I mean, most of the support we got was from families who don’t have anyone with different abilities, community members, they just rallied. It was like the most beautiful thing to watch people just rally for your child and other children and to realize that this is actually just as important for them in their kids educational experience, as it is for people who have kids with different abilities, the effect is incredible.

The effect that our kids with different abilities have on typically developing individuals is something that you can’t replicate. It is so special, it’s so important. These kids need every reason they can to get outside of themselves and to do something incredible, like peer mentoring. And that’s something that you take if you take that program. You’re taking away that opportunity for them to possibly want to go into special education, or into physical therapy or speech therapy, you’re taking the career paths, you’re taking away friendships, lifelong friendships. It’s so important. And you’ve got these kids with the most impressionable young age, missing that opportunity. Because, you know, this school over here doesn’t have a program.

We want to work with these schools and these districts. And actually, I think the schools want to work with us to from what I’m hearing all the administration’s and teachers, they do they want these kids there. This is something that’s got to be corrected on a board of education level, legislative work needs to be done, in districts. It’s really the people who are actually on the ground. They want these kids there.”

Matt Rascon: “What do you think made the difference for the school district to then reverse the decision? Because this has happened, of course, in other districts?”

Oakley Peterson: “Yeah, we were told the day before by somebody who has worked in the district for 26 years, “Good luck. You’re not going to be able to reverse this.” And we were devastated. I mean, the morning of we were figuring out all of our local legislators trying to we were just desperate the morning that they reversed it thinking, I don’t know if they’re ever going to reverse this. What are we going to do? How is this happening in 2021? This is like, borderline civil rights situation in 2021. And then they reversed it. And they really believe it’s the power of social media word just spread quickly. And there was a huge impact from the social media influencers in Utah, just spreading the word. We had Joe Ingles posting, this is not okay, we’re better than this, Utah. People on higher levels, were starting to get word catch wind. And I think that the district really realized, oh, we’re in a pickle, or maybe they woke up and realize we need to do the right thing. But I think it really was just the power of community, I think and then seeing how much this does matter to the community. And this isn’t okay with our community. We’re not going to allow this or stand for this anymore.”

Matt Rascon: “Yeah. I’m thinking about your son. Well, this doesn’t change anything for him now, though. And where does that stand?”

Oakley Peterson: “Well, if I don’t do something about it now, what’s going to happen when he is in high school in a few years? I mean, yeah, no, this doesn’t directly affect my family this year. But we have to stand up now, and make steps to progress now. So he is able to have those opportunities. And if he’s not, I’m darn well going to make sure that the kids after him with different abilities are. This is important, these kids changed lives in a way that there’s just no way to replicate. And I want I want my kids who are typically developing, I want them to experience kids with all different abilities, not just my son, but I want them to have that experience and that those like, relationships formed for them. I want them to experience that.”

Matt Rascon: “You know, what would it mean to have Wells be at the same school as a the neighbors?”

Oakley Peterson: “It would be such a dream, to have him go to school with his friends, the kids who love him.I love where he’s going. I know that people love him there. But I don’t know them. That’s not our neighborhood. It’s not our immediate community. It’s a good one. One mom put it like this. What if there was this beautiful community center built and your whole family could go, except for one of your kids, they couldn’t go. It was so fun. It was wonderful. It was where your kids were gaining a lot of life experiences. But one of your kids wasn’t allowed in that building. They could go to this one over here, this community center, which was also beautiful and wonderful, but they couldn’t be here. Would that be okay with anybody? Why does it have to be okay with us? Why is that something that we’re just accepting? The kids, these kids all belong. They belong. What if you were told you didn’t belong? Because, you know, you had different interests than all the other kids in your class. Would that be okay? Or what if it was because of your religion? Would it be okay that you didn’t belong in your classroom, or the color of your skin? Or your family background? Would that be okay? No. Why is it okay with the special needs kids? I know that it takes resources to educate them. But they are general education students before they are special education students. And they have that right to be in their local schools. And we want to work with our legislators, with our districts with our Utah Board of Education. We can make it work. I know we can. But I think that this movement was a wake up call, okay. We don’t have to accept this. We can expect better for our kids. We can fight for better, our kids deserve better. All the kids in our community deserve the light of those kids in their schools. And we can do better. And I mean, really, yes, this was completely a community effort that reversed this decision. people realize and they were angry about it. They were upset. We have a lot more work to do. But it was a great like first victory. It really woke us all up to like, we have the power to make change. We have the power. We have the community behind us. We have people that realize that better can happen. And if we work together and link arms, we can really create some real progressive change.”

For many people who do not have a disability or a child with a disability, how we create equitable access to education is not always a top of mind issue. In fact, Salt Lake City schools did something similar in 2019, consolidating special education programs into specific schools in the district and creating hubs of sorts. Every disabled person has stories of fighting to access everything from education to healthcare, and rarely do thousands show up to help.

So what does equal access to education look like? What is required by the law? And what should we be doing simply because it’s the right thing.

To answer that question today–like most issues of the day–it’s important to look at the history. Section 504 of the Rehabilitation Act was signed into law in 1973–becoming the first civil rights bill for people with disabilities. However, the bill was largely unenforced, with both the Nixon and Carter administrations dragging their feet on actually putting regulations in place that would allow the law to be enforced. On April 5th, 1977, a group of disabled activists across the country held rallies at Health, Education and Welfare offices. Activists in San Francisco stayed in the offices for nearly a month–the longest sit-in in US history-before regulations were put in place. More robust protection under the law didn’t come until the Americans with Disabilities Act was signed in 1990.  You can learn more about the disability rights movement in the Oscar nominated documentary Crip Camp.

In schools, the Individuals with Disabilities Education Act ensures schools receiving federal funding provide students with disabilities a free, appropriate, public education. And this doesn’t just to apply to students we typically think of as having a disability–this includes students with diabetes, injured students, students with health problems like cancer or chronic issues. But what does that mean according to the law?

Here’s Nate Crippes, a staff attorney for Utah’s Disability Law Center.

Nate Crippes: “The goal is to try and prevent segregation. Unfortunately, I don’t know that it’s always worked that way. But when you talk about least restrictive environment, I think there’s a correlated provision in the IDEA, or the ADA and 504, that’s talking about serving people in the most integrated setting appropriate to their needs. And so there’s this idea in the ADA, that unnecessary segregation is unlawful. And I think the IDEA says you should provide an education to a student in the least restrictive environment that is appropriate. I think what people would like to see is students who have an IEP, students who are in special education, also spending at least a good portion of their time in the general education classroom would be the goal. Now, you know, These are individualized. And so certain students are going to have different plans, and so that it’s not going to look the same for everyone. But the goal, I think always is to try and provide it in the least restrictive environment, the place where they have the most interaction with their non-disabled peers. You know, I? And oftentimes, yes, you find the district will put all the students with IEPs in a certain subset of schools, and so certain kids can’t go to the school that their sibling goes to, because they have to get their services at another school. I understand that there is a desire to say that, “Oh, this is, you know, this is where we provide those services.” But when I look at it, you don’t see school districts setting systems now where we say, “Well, if you’re a person of color, this is the school you go to. But if you’re not, you don’t go here.” And I guess I always struggle with how disability is seen differently, that we can say, “No, you can go to this school, or you can be served here because your disability.” I get they’re not, they’re not exactly the same, there are certain differences, I’m not trying to say that they can be equated perfectly. But at the end of the day, I think what we’re trying to do, what we would like to see with the IDEA and the ADA before is that students should go to the school, that is their neighborhood school, they should receive their services in the general education classroom for as much of that as they, as is appropriate to what kind of the team that designs the services and supports.”

Kristine Napper is a middle school English language learner teacher in the Beaverton Oregon school district. She graduated from BYU with a degree in special education and is the author of the “A Kid’s Book About Disabilities.” She also has a disease called Spinal Muscular Atrophy and has used a wheelchair basically her entire life. And while currently she doesn’t specifically teach special education classes–she says basically every teacher teaches kids who need different supports to help them be successful in the classroom.

Kristine Napper: A strong classroom is a diverse classroom. On one end of the spectrum, you have the idea that all students with disabilities should be kept in a completely segregated environment, where they’re in a special ed class exclusively, and never interact with the rest of the school. And I think at this point, most of us agree that that’s not the ideal. That’s actually terrible in most cases. And then on the far other end of the spectrum, you have what will be called full inclusion where a student is in completely mainstream generalized classes. And for some kids, that makes perfect sense. For many kids, that makes perfect sense, as long as they’re getting the accommodations that they need to be successful in the mainstream classroom, and that’s where they should be. But also, for many kids, the answer is somewhere in between the two. There’s many different kinds of special ed classes and settings and supports can be available. For some students, it makes sense to be in mainstream classes for the majority of their day, and touch base with a special ed teacher, maybe for one class a day or for some even just like once a week, to get the support that they need. For other students that make sense to spend the majority of their day in a special ed classroom, with their disabled peers, and getting instruction at their level. But they’re able to join mainstream classes for electives, PE, some kids are able to join for maybe one academic class, and we just look so different for every kid, there’s so much variety.

Students who have disabilities are supposed to have an individual plan written for them that explains what their educational needs are, what accommodations they need to get their needs met. And that is supposed to be based on the student’s needs. But often, when a student changes schools, or especially changes districts, the first thing that happens is their plan gets rewritten, because suddenly their needs are different, meaning this district offers something different. And if the students plan is being based on what the district is already decided is appropriate, then that kind of feels like the tail wagging the dog situation. I mean, you’re never going to get the complete ideal where the entire school can accommodate to every single kid in every way that’s perfect for them. I realize ideals don’t exist. But that is the ideal. And that’s what we should be striving toward and getting trying to get closer to. So when students change school districts, our entire model of education ideally wouldn’t change. Because it should be based around what they need, both for to meet their academic needs, and their social needs. All of those things be part of the picture.

Something I’ve noticed in our school district is we have a lot of specialized Special Education Programs. Because we’re a large district, we’re able to have very targeted programs to kids with certain needs. And again, the same kind of flexibility where they may or may not spend their whole day in that program. But programs that meet kid’s needs. But there are very specific numbers, how many kids it takes to open a new classroom, or to keep a classroom open. So there will be a given program, and maybe we have enough numbers this year, to have three of them spread throughout the middle schools in the district. And then next year, there’s two fewer students. And that takes us below the limit. So now we have to close one program, and now there’s only two, and it changes so frequently, with just a very small change in student numbers. We’re constantly opening and closing and moving programs around. So the special ed teachers and special ed students often get changed frequently from one school to another, which is hard on any kid. All kids benefit from the stability of being in a constant school environment and feeling part of the culture and all of that, but 10 times more so for a student who would qualify for these specialized programs, like these are often the students who need and crave consistency and stable routines the most. And often they get it the least.”

And like Oakley Peterson said, diversity in a school benefits everyone.

Kristine Napper: “Being around people who’ve had a different experience than you who approach the world differently from you. I think that helps your learning experience, like no matter who you are, and where you’re coming from, you’re able to see for the eyes of the people around you. A lot of times students with disabilities have a very creative problem solving ability. I know that I’ve had to solve problems in creative ways my whole life, due to my own disability. And when that rubs off, and it helps people around you to notice things, they wouldn’t have noticed otherwise to approach problems in ways they wouldn’t approach them. Otherwise. kids who’ve been around peers with disabilities become more aware of other people’s needs are better able to meet other people’s needs. Like it just is such a better learning experience.”

And having a diverse group of disabilities around doesn’t just benefit the non-disabled school community, but the disabled school community as well.

Kristine Napper: “Most people who grew up with a physical disability or learning disability of any sort, they don’t always have that just a built in role modeling and sense of community. And you can end up feeling like the only person going through what you’re going through, like no one’s ever done this before. So when you’re able to meet other people who, whether it’s the same disability, or even if it’s completely different, just having somebody who shared those general experiences. I think the disability community quite honestly would be stronger, and be able to make more progress in the world as far as public policy and such. If we broke down the lines a little more. You know, I don’t just identify with other wheelchair users or other people with SMA, but people who have all forms of disabilities. We share a lot of common interests. We share a lot of common perspective. There’s a lot that we have in common I know that we can learn from each other. And I think we’d be stronger if we spent more time working on things together.”

And the most important role we can all play in our school communities is paying attention to who isn’t in the room.

Kristine Napper: “I work in a rather large district, there’s, it’s a lot very diversity. There’s a lot of different economic levels in racial groups and linguistic groups, we have about 100 languages spoken in our school district, it’s very diverse. There are definitely needs that get noticed and needs that go kind of under the radar and don’t get noticed. And that has a lot to do with a person or groups sense of connection, who they know what opportunities they have, they get their voices heard, how empowered they feel to speak up at a school board meeting, or at a PTO meeting or any of these places. Whereas, you know, I’m an ELD teacher, I work with immigrant families, I work with a lot of parents who don’t feel like schools a safe place that they know the system and are able to even follow what’s going on or realize that things could be different if they asked for something different. So I really ask everybody to keep an eye on not only their own school, but the other schools in the district, not just your own child, but the other kids in the school. What opportunities are being given to some kids and not other kids? Who’s being impacted by budget decisions? Who’s being impacted by school boundary lines by programs? I mean, there’s just so many, you know, political decisions to get made in a school district. But no matter what the decision that’s going on, just to take kind of a wide view to how is this impacting all members of our community? In trying to attend things like PTO meetings and such, and find out who’s not at those meetings? And how can we get their voices there, make connections with families in your community, makes connections outside of your own circle? I’m trying to elevate voices that might not be being heard as frequently.

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