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0:00:05.4 V.B: Welcome to the Inclusive Education Project. I'm Vickie Brett.

0:00:09.1 A.S: I'm Amanda Selogie. We're two civil rights lawyers on a mission to change the conversation about education, civil rights, and modern activism.

0:00:19.4 V.B: Each week, we're gonna explore new topics which are going to educate and empower others.

0:00:25.4 A.S: And give them a platform to enact change in education and level the playing field.

0:00:33.0 V.B: Welcome back, listeners.

0:00:35.0 S.F: Hi, friends.

0:00:35.8 V.B: We have a special part two with Santanna. They're back. Yay. So, in the last episode, we really were just trying to break down ableism, right? And trying to, as we always say on this podcast, start the conversation and really see if we can change perspectives. Since we've discussed that, we wanted to have a part two with you so that you would be able to kind of explain to the listeners the work that you do. And I think we can start with the definition or your perspective on what a neuro affirming IEP is.

0:01:12.3 S.F: Perfect. So, neurodiversity in education really means valuing all types of thinking and learning equally without considering any as superior. It focuses on equitable inclusion by accepting diverse ways of engaging with the world. It's really rejecting the idea that differences from the norm are problems to be fixed. Being neurodiversity affirming means aligning with the belief that societal and physical barriers create disabling environments and that impairments result from these barriers, rather than focusing on what's wrong with the person. So when we're looking at, you know, that educational aspect of IEPs, we really want to respect the students' autonomy, validate their differences, assuming they're competent, adjusting our expectations, encouraging self-advocacy, adapting the systems and environments, and we're honoring all forms of communication. The IEP is not about changing the student. It's about supporting their strengths, acknowledging their challenges, and removing barriers so they can benefit fully from their education. So, ultimately, the goal is not to change the student, but to support them, embracing their authentic selves, just as their non-disabled peers are privileged to do.

0:02:37.6 V.B: That's so concise. I know it doesn't seem like it, but it's so concise...

0:02:41.8 A.S: No, that was great.

0:02:42.9 V.B: In. Yeah, in really changing just ever so slightly the perspective of people. I think ever since I've known Amanda, she's always said, you know, we always start off at IEP with like parent concerns and like what is wrong with the child? And like we very rarely ever take a moment to like focus the IEP on the student's strengths. And, I mean, that is the work that you're doing when you go into an IEP meeting. I know the last time we had talked about trying to see if teams would meet with you beforehand and in a perfect world if they could do that. Is that something that you're kind of starting with just as the expectation or goal? How are you able to bring that definition to the table when you advocate?

0:03:34.2 S.F: I email it.

0:03:36.8 S?: Love.

0:03:38.2 S?: Yeah, yeah.

0:03:38.7 S.F: I email it. Something that's unique for the advocacy that we're doing for accessible education is we're not solely like parent advocate. Well, caregiver advocates, that's a more inclusive term, is caregiver. But that because most of like the state education centers, are really focused on educating the parent on how to advocate for their child, we look at the evaluations, we look at the data, we work with the parent and caregivers on what is their child's difficulties, and we write recommendations for present levels, for goals, for accommodations. And we really help try to guide the caregiver and the team on drafting and writing an affirming inclusive IEP. One of the other definitions that I've done, one of our presentations was focused on redefining inclusion, and my definition is focused on equitable inclusion. And that means that inclusion places accessibility and equity as the priority. It involves taking an anti-oppressive approach to ensure that everyone can fully participate and benefit from a situation or opportunity. And from the perspective that we're coming from is we are also trying to reduce the amount of school-based trauma that happens for disabled students through their IEPs.

0:05:14.3 V.B: I want to actually touch on that. That was something that I don't think a lot of people recognize. We had touched on it in our previous conversation with the enlightenment that you had surrounding the ABA practices that you were conducting right in a prior life. What are some, for our listeners, some examples of the trauma caused by an IEP that you have seen with the consumers you work with?

0:05:41.6 S.F: So I see it with my clients that I work with, in particular, that when the IEP is so focused on the disabled child not being disabled, you are placing expectations on them to push through and meet those goals without the supports and accommodations that they need. When you are being met with rewards for meeting an expectation, and you can't meet that expectation because you don't have the supports to meet it. And they're just like you know, if you do this, you will be able to have extra recess time, or the opposite, that you have your recess time being removed. You aren't understanding what your internal experience is, and you're not getting the human connection that you need as a human because you're just constantly being told that you're not good enough. We're not going to take the time to listen to you and understand what your barriers are because you just need to meet this expectation so you don't look disabled. Like think about like...

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0:06:44.1 S?: Like take a pass.

0:06:46.3 S.F: Yeah.

0:06:48.0 V.B: Oh, go ahead, say that again.

0:06:49.6 A.S: It's based so much on what society believes should be normal, rather than allowing a student to live their like true, authentic self like who they are. I think an example we see a lot is creating goals based on forced eye contact. When it's... That's an expectation that society has placed. This like this is good manners or this is proper etiquette. And it's like why?

0:07:15.8 S.F: And if you're not taking the time to really understand what the behaviors are indicating, that's another thing about like the disability justice perspective, is that behaviors aren't communication, they're an indicator to dig deeper. Because some behaviors whenever you have disinhibition, they mean absolutely nothing. You're not communicating anything, you know, whenever you sneeze, is that communicating anything to anybody? No. Can you control a sneeze? No. How traumatic could it be for you if your goal was to reduce the amount of times that you sneeze in a day?

0:07:51.1 V.B: Right.

0:07:51.2 S.F: Would you do that?

0:07:52.2 V.B: Right? Yeah. Absolutely not. Yeah.

0:07:56.2 S.F: And then you have that leading to the more difficult experiences and activation that a student has within the education environment that gets labeled as challenging behaviors that the behavior intervention plans are created for, but the functional behavior assessments aren't actually taking the time to really understand what's going on leading to that activation. Then you continue to have the trauma because how many of those students get restrained or secluded because of their activation and the IEP isn't addressing the things that they need to be regulated appropriately. Or then you have the complete opposite where it's not visible activation and it's shut down. So they're just complying. They're not getting their needs met. They're struggling, but they're struggling quietly, so nobody's paying attention to them to get the support that they need. Then that leads to school avoidance and then all of the things that spiral from there. And that's...

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0:09:03.7 A.S: And that's telling them that their needs are not that they don't deserve to get their needs met.

0:09:08.1 S.F: Correct. And then you have a parent or a caregiver going to the school, as I am trying to do for my kiddo, and then you're just told that there's not an academic need because they're able to meet state standards in their test.

0:09:20.3 V.B: You know what that has been? I don't know if there was a conference or something, but I've heard that so often this past academic school year that there's no. There's no academic need. I'm like what? That doesn't. That does not matter. An IEP, we know, is not just academic. It's socio-emotional, and vocational. And I think that when they are trying to hide behind something like that, it's like they know they're wrong. But it's just like this is the way we've done things. And it's so frustrating. I can only imagine as a parent like yourself, to say, what? Like I do this work. Like you are completely wrong. Right. But having to manage right and regulate yourself.

0:10:06.1 S.F: That's the hard part.

0:10:07.2 V.B: So that you. Yeah. Right. I mean, it can't feel personal. Like it most definitely feels personal right?

0:10:14.4 S.F: Well, if I was that kid, that was me, right?

0:10:16.7 V.B: Yeah.

0:10:17.0 S.F: I barely passed 7th grade, I completely failed 8th grade. I did. I took. I had to redo 8th grade in alternative school. So I did 8th grade in a semester. And then I went to high school. Then I did high school in three and a half years. It wasn't until three years ago that I learned that I was like a salt language processor, that I had specific learning disabilities in reading. I'm borderline dyscalculia. And I struggled all through school, socially, emotionally, academically. And then I'm seeing it with my own kid. And I'm just like I feel so emotional because it is simultaneously my own school-based trauma, systemic ableism from the not recognizing because I wasn't having meltdowns in school, I was shutting down. And that's kind of a good point to talk about why we don't like functioning labels in the disabled community because the functioning labels are how my disability is impacting the people around me. So if I'm, "High functioning," my disabilities aren't impacting you in a way that you feel like you need to change it, basically. I'm able to produce, so I'm high functioning, then vice versa. Well, they're low functioning because their disability is impacting how much we have to do for them. So they are low functioning. And even if you try to switch it around to support needs, it's still the same message, in my opinion.

0:11:45.5 V.B: Interesting, something that you had touched on that kind of brings us to a bit more of the work that you do. And I mean, that we do really is, you know, trying to. And you had even just said it, not just the last episode, but today in terms of rewriting the IEP, but using the district's own data. And it's not, you know, words are powerful, and I feel like the more that you use them in the correct context regarding a particular kiddo, my hope is that these teams would recognize that it's like, "Oh, this is applicable like across the board, not just in the meeting that Santanna is in with me." Right. Can you talk a little bit about that work? Because it seems so overwhelming, right to be able to cut you. Right. Yes. How are you rewriting IEPs using the district's own data?

0:12:43.8 S.F: So I read the evaluations, and Lizzie and I do this together. So it's not just me. And I don't want that to kind of like be the message that I'm doing all of this because I have Lizzie who is an occupational therapist and is in ADHD, or herself. ADHD is autistic and ADHD. And I also have a PDA profile myself, and a lot of students that I support who are also autistic also have a PDA profile. And my reframe for PDA is physiological demand avoidance because it's a nervous system response to demands. But like using.

0:13:19.0 S.F: For an example, my friend, I'm helping with their two autistic toddlers, and one of the things in their evaluation was talking about their attention span and that needed to be addressed because they didn't have an appropriate attention span. And the goal was like that they needed to complete the activity cycle and sustain attention for seven minutes. And nowhere in the proposed present levels did it state from the evaluation that whenever it was an interest-based activity, that they were able to sustain attention for a time period that was developmentally appropriate for their age, which was two to almost three, and that the specific attention span that they were targeting was an adult-led activity.

0:14:14.3 S.F: So the present levels for both of those autistic toddlers was changing the focus of their deficit in adult-led activity to they have developmentally appropriate attention for both their age and their neurology for being an autistic toddler. This does not need to be addressed, basically, but just taking the data and really highlighting the strengths and the barriers to support our recommendations for goals and accommodations.

0:14:49.3 V.B: And more often than not, that conversation is not happening in terms of like the, you know, we always non-preferred or preferred activity, right? Or even taking into consideration what general education peers. And I say it like that because I'm using quotes, you know, because more often than not, it's like "Okay, well, if a normal," quote unquote, "whatever normal means, right. That's how we kind of approach it when we're kind of talking about the goal. And if the child is only in, you know, a self-contained special day class, that's why it's still important to have the general education teacher present, because we see that parents will dismiss that person because their child is not in Gen ed. But if you had that Gen ed teacher there, they could discuss that like, Oh, yeah. For, you know, a 6-year-old, you know, five minutes of a, you know, even if it's a preferred activity like five minutes, that's great. And then you're kind of seeing like, Oh, my child's kind of fitting in with what, you know, the quote-unquote "norm" for this teacher, for this particular class, especially if we're trying to get that kiddo in that teacher's class."

0:15:58.0 V.B: Like, "My child fits, fits in." I think that's just something important to kind of note for parents as well, is to still have that individual present because they have a plethora of information that you may not otherwise have.

0:16:13.4 A.S: Well, also, just like digging deeper into the data is like essentially what you're doing, and that is what a school team should be doing and is more often not even just with autistic children, but across the board, we see is missing from the discussion at the IEP table, is really analyzing the data and saying, "What does this data actually tell us about how the child is functioning within the classroom or would or could function within the classroom?" And looking at what is the piece that, if any, that we need to be working on based on this data? Because like when you analyze it, oftentimes you come out with a very different conclusion than if you just look at these data points on the surface level.

0:17:00.6 S.F: Well, then you also have the problems of the medical model versus the social model in that in itself, because the data misses so much information because it's so focused on how the child is functioning, something that Lizzie and I specifically do. So Lizzie has created a model that's called the four areas to support, modify, and adapt. And we, with the four areas to support, we are looking at things that include factors within the activity itself, the environment itself, the expectations, and connecting all of that to their personal factors because we really are wanting to know are what are the barriers in the environment that are preventing the student from accessing their education, which is, this is not in that evaluation data.

0:17:50.6 V.B: Yeah, this is something that I've been ever since I heard it was, oh, my gosh, I'm totally blinking on his name now. And I just had it. He was on a podcast and was talking about how when, you know, we build a home it's like set up, you know, top to bottom. And then we think, "Oh, we have to have it be ADA compliant. Like let's get the wheelchair ramp." You know, instead of before we even build the house, can we bring everybody together of all abilities and have them have a seat at the table in building the house, right?

0:18:28.5 V.B: And I think that that's what your, you know, overarching goal is when you come to these IEP meetings is, you know, we're, as humans, we're focusing on the weaknesses of this child, right. And because that is inherently how society views disabilities. And so how are we going to mold the child so that they can pass in our society? And your perspective is, "Wait, can we like not like how are we going to be able to make this more accessible?" And so many teachers are already doing things. But it's funny because like a lot of parents, just a very, very simple example is, I mean, there's a lot of teachers saying, "You're adult. When you have a chance, make sure your adult sees the permission slip," instead of mom or dad or even parent as a more inclusive kind of title for the child, right?

0:19:25.2 V.B: Because we don't know, you know, maybe some teachers do, but, you know, 15 years ago, people aren't saying that. It's like they're just saying mom and dad. And I think that what, that's what you're bringing to light is how are we able to, through this IEP.

0:19:40.3 V.B: Able to get this child to where they need to be, right? And that starts with the goal that the parents may have. And then, you know, maybe we only take it one day at a time, which is fine. But I think that that's what's really hard for a lot of caregivers like you had mentioned, is the not knowing. And I think that's where Facebook groups or just finding your own village within your community is so important because then these people have different experiences that can enlighten you. And that's why we're grateful that you were able to come on as a part one and a part two to kind of enlighten our listeners, but then to also kind of share the work that you're doing because it definitely, there is space for it and it really needs to be out there more. And before we end, I just wanted to kind of ask you, what is something that you would like if a school administrator is listening to this, what would you like them to know in general, either about the clients that you help or the work that you do or just any kind of bit of information that you think would be useful for them to take moving forward?

0:20:46.6 S.F: I think that's a really good question because you had said that everyone likes having more of like a tangible, real-life example, and I'll read it, and it will explain the thing that I want people to know is that the responsibility of inclusion and accessible education, it's on the adults, not the child. It's not the child's responsibility to continue to have to adapt, set their needs aside, and meet the expectations that aren't actually individualized for what their needs are. Going back to the autistic toddlers, I'll read the annual goal, and then I'll read one of the benchmarks.

0:21:33.6 V.B: Okay.

0:21:34.0 S.F: It's a little lengthy, but it needs to be because we're using plain language so everybody is able to implement it and it's specific, which needs to be how goals are written. So given the individual communication supports listed under the adaptations above, student will increase the clarity and complexity of his communication, from using occasional gestalts with emerging mediations, which is combinations of gestalts, to using his total communication system to communicate what he wants and needs to initiate with others, to ask for help, to make a comment, to share an interest, refuse and, or end an interaction at least five times across five different preschool routines as measured by the SLPs through communication samples. And the benchmark that I really want to share, because it actually got included into the IEP, which is just really exciting for me personally, is that 80% of students' communication will be understood by staff. Teachers and staff will respond accurately to 80% of what the student is telling them during communication opportunities, as measured through classroom observation and communication samples taken by the SLP. This benchmark is specifically measuring the adult's ability to adapt and understand the student, and it's not the student's ability to make it in a way that they understand.

0:23:10.1 V.B: Yes. That's so powerful. And that was a younger kiddo in preschool.

0:23:17.4 S.F: Going into preschool.

0:23:17.9 V.B: Wow, just that shift in that dynamic.

0:23:21.7 S.F: Whenever I put it in the recommendations, I wasn't expecting that it was going to be accepted, but through the teamwork that I had with this team, and they were just absolutely fantastic, they actually included it in his IEP. It is an actual benchmark in an IEP that the adults will be measured, not students.

0:23:43.2 V.B: It made sense, right? It made sense for them to include it, to be able to collect the data and be able to have a discussion about it, right? I mean, obviously, it still involves the child, but the focus, like you said, was more so on the complete interaction, right? It's not just one way, it is two ways. And we would love to personally just kind of hear an update on that if you continue to follow that client because that... Yeah, that'll be really interesting to kind of hear how the team approach and hopefully achieve that benchmark for that goal.

0:24:22.1 S.F: So the first benchmark is focused on modeling his total communication system and then the way in which we have written all of the goals in this particular IEP. So like the ultimate goal of the IEP is that by the end of the preschool year, the student will experience a positive relationship with learning in a safe, inclusive, and supportive environment where he feels emotionally secure and valued for who he is as an autistic toddler. The focus will be on supporting his needs with the adults adapting to create an environment conductive to his growth and development. And additionally, he is to have felt safety in all relationships with staff. Then all of the actual goals are broken down, and the data from those goals will be able to help cultivate and craft an IEP throughout his entire education based off of just entering preschool.

0:25:19.6 V.B: And I think that being able to word it in a way that really... And that's what we say all the time, an IEP should be picked up by anyone, right? In case the child moves, and they should be able to understand it and know how to collect the data, which is amazing. Santanna, if people wanted to... I know the last time that we provided your... Oh yeah.

0:25:40.7 S.F: I have one quick question before you go through with that especially since we're talking about this, and this is something that I have a hard time in the intersection that I am with advocacy and kind of... I want to know your thoughts on... You know, we're going into these IEP meetings as advocates, and you guys as attorneys, and you know, being on this perspective of things, and we're really trying to do multiple tasks and agendas of trying to help educate the school teams and get an affirming IEP and making sure that the child has an education in a way that's individualized for them. And then we're also trying to focus on like the compliance aspect of, you know, federal and state. And the thing that I've have a really hard time with is that while all of those goals are nice, I have a hard time with... At what cost of trying to like have at a level that is respectful to the team is it going to harm the child? Because they're ultimately my client, right? It's not the student's responsibility to take on the educating of the entire school team, because it's really their team to adapt to them. So that was my curiosity of your guys' thoughts on like trying to do this work, but ultimately, at what cost does it come down to the student and how to mediate that?

0:27:09.0 A.S: I think it's really going to be somewhat of a case-by-case analysis, looking at a number of factors because, you know, we want to fight for as much as we can for these kids and help them advocate for themselves as well. But we want to do it at a level as much as possible where we are working towards that common goal of supporting the child and making sure that everyone is on the same level of understanding. So like we can fight all day long till we're blue in the face to get an IEP written exactly the way we want it. But when push comes to shove, if the people implementing it don't truly understand how or why to implement what is written on paper, to what extent are we focusing so much on the paper and not on the implementation? And so I think that's something that we try to bring to our advocacy with our clients, too, is trying to strike that balance of, you know, in some cases, the language we use and certain things we say, it means so much and then others like it is important. But if like we only have so many minutes in the day, we only have so much energy, everyone only has, you know, so much they can give.

0:28:31.5 A.S: And so sometimes it leads to those priorities and the priorities for that student or that family, you know, on that focus. So, you know, it's not always going to look the same, I don't think. But I, if we're truly wanting the IEP team to meet us halfway, we have to also like there are certain things that we can draw a hard line on, but there are other things where, as we are educating IEP teams, as we are educating educators on these perspectives, we also have to give them some leeway, too, to get there and meet us there.

0:29:06.3 S.F: Yeah. And like...

0:29:08.2 V.B: Yeah, I was just going to say, you're not going to be able to solve all of the issues. It's an entire system, right? And I think something that we've learned in our personal lives as well as we have kiddos entering into the public school system is the power of a parent to go to board meetings and to really, you know, if you really want to affect change, who's holding the money bags, right? And if the boards are pushing trainings for teachers or not, that's where you need to like focus in, right? But I mean we say this...

0:29:45.7 S.F: I can't believe you talk about this thing because the thing that you just said happened in Minnesota last week. I just got on the tail end of the group of people who are advocating for it. But it just got passed as a bill that teachers in Minnesota, to get their license are going to have to learn about ableism.

0:30:03.0 V.B: Wow. See that? I mean, that... I can't imagine that didn't happen because of the work you and others are doing, right? Like for that to even be on people's minds, to put that in is incredible. And we are just so grateful for you and the work that you're doing in Minnesota. Please, reach out to Santanna if you have any questions for them. They are just a plethora of knowledge, and we are just so grateful for you and your time, and listeners, we will talk to you next week.

0:30:39.1 S?: Bye.

0:30:40.0 V.B: Bye.

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