You can listen to this podcast episode on iTunes or Spotify.
Students with disabilities will experience two kinds of barriers to learning. One type of barrier is created by their disability. The other kind is created by other people’s attitudes.
Both kinds of barriers need to be addressed in order for kids to learn to their full potential.
This is both a challenge and an exciting reality.
You might agree that it is a challenge but not be quite sure what is so exciting about this.
Here is where I am coming from. Kids with disabilities often face low expectations. People make all kinds of dangerous assumptions about what they can and cannot do.
But here’s the thing. Unless and until all the attitudinal barriers are removed and all the high-quality supports, accommodations and interventions are provided to address barriers created by a disability, it is impossible that someone will reach their full potential. Right?
If that is not the case then we cannot realistically come to any conclusions about the limits of someone’s potential based on where they are at today.
In fact, the only safe assumption is that they are more capable and have more potential than is currently evident.
That is SO exciting!
If you are catching this episode just as it is published then there is still time to join 5 Days To Ending IEP Goal Agony. This fast, action-oriented workshop will help you develop IEP goals that support students to reach their potential.
5 Days To Ending IEP Goal Agony will take place in a pop-up Facebook group. Erin Sheldon, MEd., will present 15-minute lessons each day from November 4th to 8th.
If you don’t know, Erin Sheldon earned her graduate degrees studying the educational needs of students with Angelman Syndrome. Erin conducts professional development workshops and webinars for educators and therapists on the assistive technology, communication and literacy needs of students with significant disabilities including Angelman. She has published journal articles, book chapters, and manuals for educators. Erin is the CEO of Integration Action for Inclusion: Ontario’s parent association for school inclusion. She works for Assistiveware, which is a company that makes and distributes AAC software. And Erin is the mother to two girls – Maggie, a 16-year-old with Angelman Syndrome and Ella.
To register just join the group here.
Genia: Welcome to the Good Things in Life Podcast. I’m your host Genia Stephen. Today’s podcast episode is a audio replay of a live webinar that Erin Sheldon gave that talks about removing barriers to learning for students with disabilities. And Erin talks about a lot of really core concepts that are super important for us to understand. And she also talks about her experiences with her daughter Maggie, and the kinds of expectations and barriers that were put in place before anyone ever thought about learning and how those expectations really limited the potential for removing barriers to learning for Maggie and how they overcame that. Now, Erin is an expert in inclusive education and an expert in IEP goals. For many of us, the IEP season is super stressful. You know, we’ve got all these little details we’ve got to sort out and it’s very hard to figure out what’s really going to make the biggest impact when it comes to IEP goals.
Genia: And it’s really easy to get off course. So we’ve been getting a ton of messages and questions and emails about IEP goal setting. And so we’ve decided to run a fast workshop to get you some quick wins and get those IEP goals set and clear and make sure that they’re of high quality and relevant to the student. So right now you can register for this workshop it, we’re going to have it take place within a short term Facebook group called 5 Days To Ending IEP Goal Agony. So you can look that up on Facebook or you can go to the Good Things in Life Facebook page and you’ll find links there to that group. Just join the group. That’s all you have to do. And from November 4th ’til 8th, Erin will be delivering quick 15 minute lessons from Monday through Friday in the Facebook group. And I know that by the end of the week you are going to be super clear about important IEP goals for the students in your life. All right, let’s get right to the presentation.
Erin: Okay, well thank you guys. Um, so my name is Erin and in the picture, the redhead you’re seeing in the picture is my daughter Maggie. Um, and Genia just asked me to talk about how really thinking about Maggie’s role as a student has been an important part of, um, how we’ve done 90 school planning. And I would say it’s been a profound part of how I’ve done both maybe school planning and also our long-term planning. Um, so these are my two girls. Um, both of them require assistive technology and have, um, very different special education needs that I have the experience of being a parent. Um, I’m also the CEO of Ontario School Inclusion Group. It’s a integration actually for inclusion. It’s our parents association. Before my kids were born, I was a union negotiator and contract organizer. It took me, I probably worked 70 hours a week.
Erin: Um, and my real job was helping people understand that is workers and workplaces, they were trying to individually solve problems that we’re actually a collective problems. So we were trying to identify what was the group problem and could we address it as a group in order to be more effective. And so when Maggie was diagnosed, um, I just kind of transferred all of that over and just started discovering that I was constantly addressing issues, especially with Maggie’s school that were not unique to my own daughter. Um, and in fact they were really common with all of my other parent friends. So I just wanted to find the strategies that would help all of us. So today I will talk a bit about our experience with Maggie and we’ll talk about understanding kind of the role of a student and how central that is to figuring out how to support them.
Erin: And then really how can we plan our kids’ participation? And even can we take assessment data, which is often the bane of our existence and extremely encouraged and discouraging information? And can we use any of that in a productive way to help us plan participation? Because school systems rely very heavily on assessment kind of data and we need to be able to interact with it. I even had a message today from a parents asking, what’s the best assessment to prove my child is ready for inclusion because the school’s assessment data says she’s not ready. And so I want to know what assessments we can take in order to get her ready. And I hope that the information in this, well, will help you with that kind of problem. Salary. So how we got here, um, this is my daughter Maggie and this a head shot of her was trending on my space 16 years ago. Um, if any of you guys remember MySpace, Maggie was born in the middle of the East Coast blackout.
Erin: We’ve always joked that she crowned and shut down an entire power grid. Um, and truly life was not the same from before and after. Her birth was very dramatic. Um, but then the aftermath was as well. And we knew fairly quickly that she had complications. Um, and at about a year old, we got a diagnosis that she had a genetic disorder called Angelman syndrome. And before we had the Angelman diagnosis, we were told she was either well deaf and blind because that was how she presented or she was profoundly autistic. So we get the diagnosis of Angelman syndrome and it’s that long list of will-never’s that um, any of us as parents who have ever been given a diagnosis are likely familiar with. Um, so we were told she would never talk, probably never walk, um, never read or writes, never probably never be seizure-free that she would have epilepsy over the course of her whole life that she would never be able to, to provide her own personal care.
Erin: Um likely never sleep through the night, um, and never be more than a toddler. And that phrase is always stuck with me because I felt like the other things were much more objective, but the idea that she would never be more than a toddler was somebody’s opinion. And it was part of the first steps that I took to sort of questioning what was it that the formal diagnoses were telling us. As Maggie went to school from early intervention, she had a huge pile of assessments. So Maggie’s assessments, um, used a lot of words like severe and profound. Um, a lot of pre, pre-communicative. Um, a lot of standardized assessments. We were told at age 4 that she was a nine month age equivalent and that she was in the first one 10th of the first percentile. And the psychologist made it very clear that what that meant was if you line up 100 children, the lowest functioning is in the first percentile.
Erin: And she said in Maggie’s case we’d have to line up one thousands children and the lowest functioning would be Maggie. That that’s what it meant, that she was in the first one 10. Um, so all of these were based on comparing her to the skills that other kids demonstrated at this team age. And there was a lot of terms like low functioning. Um, and I remember feeling as she went into the school system that it was like the medical system and then education system perceived her as this black hole that all she did was suck in services and light, um, and didn’t emit anything back. When we sat down for her transition meeting with her whole early intervention team and the whole team from the school, I was given this document, they’d already filled in four pages with the bottom half filled in with what all of her needs were. Um, and not a single item of what she does well.
Erin: And I just, it’s been a long time. It’s been maybe 13 years since that moment, but I still remember just that hit in my stomach and, and not really even being able to process what people were saying because I was just staring at this blank wall of, of what they felt that she did well. And all of that just led me to say there has got to be a better way. They just felt wrong. It felt like I either had to accept that Maggie was who the system described her as or I had to find, yeah, way. And so I went out to research and what I found at the time was person centered planning and essential lifestyle planning. it’s just one form of that. I found a document that was available online at the time called Families Planning Together. And we did, we spent that whole summer before she started kindergarten, um, just doing all of this brainstorming about who was Maggie? Who was she as a person? So we can fill in that top box and make sure that as we were planning to meet her needs at school, that we were also planning around her strengths. Um, and so I asked everyone who knew her or interacted with her.
Erin: So tell me what’s your favorite part about Maggie, or how do you feel when you’re with her? Um, and just got incredibly positive responses back that she’s enthusiastic and she’s so curious and she has such a contagious giggle and she cannot be bribed. She is not easily impressed and she’s, you know, just goofy and very authentic. We brainstormed everything she liked to do and I asked the kids she went to nursery school with and the girls who supported her. I had these mother’s helpers who were 12 when Maggie was two. Um, and what are the things that Maggie likes? And it was hilarious cause I knew that she liked things like, um, climbing and wrestling and just being very active. Um, I knew that she likes to walk the picket lines because um, we do that. That’s the kind of family we are.
Erin: We, Maggie really likes marches, doesn’t so much like rallies, but she really likes a good march. And she likes to explore and the kids told me things like that. One of her favorite things to do is when there’s water melting off of snow, that she likes to sit with her fingers in that water that’s running off. And they were very serious about this. It’s like this is a really important thing that needs to be honored. So all of those things, um, went on the list. I remember one boy told me that, um, Maggie really likes gravity, that it’s one of her favorite things because watching things fall and watching things crash is just so entertaining. So we put “loves gravity” and we brainstormed all of the things that she didn’t like. All of the things that we knew. Um, she just really resented in the peace things existed, they just made life harder.
Erin: And some of them were things like brushing teeth and brushing hair, which, you know, we took getting nails cut, we just have to be able to deal with these. Um, but other things were when her friends leave. Um, others were just, you know, very strict people or being forced to look at things without touching them. We knew that she needed to touch things that she was looking at. We knew that if she was actually interested in something, she’d probably put her mouth on it. We didn’t know until age eight that she’s legally blind. And so she wasn’t actually seen what she was looking at and that’s why she needed to be able to touch it. But we knew just through person centered planning that it was extremely important that she could touch things. And so we watched her at her preschool after she started school.
Erin: We watched her at school. And we just kept notes of like, what’s working about school and what makes a completely perfect day? If we could design the perfect school day, what would it look like? Um, and there would be no standing and waiting in line, but there would be a lot of friends and a lot of technology and a lot of music and movement, dancing and long reads [inaudible] and, and lots of exploration. And we thought about what makes that terrible day at school. What were the things at school that if she could just never have to deal with them, she would? Um, and one of them was just being reprimanded. She’s very still at age 16, just really struggles with being reprimanded. She really doesn’t want to do things wrong. So she really wants to know what the goals are and to try to follow them.
Erin: Um, she’s very distressed if she’s around angry people. Um, and that’s just something that just kind of makes her immediately go into, uh, a very cautious, very fearful place, um, because she, she really struggles with being exposed to other people’s anger. And we looked at all the people who supported her and we asked the people who really get her, who support her so well, so she’s so successful, what is it about them? What are they doing? Um, and we noticed that they’re cheerful. We noticed that they were people who just enjoy her personality and enjoy her curiosity and follow her lead and allow her to explore and allow her to take some risks and who just really respond to her and they’re warm, but they also let her know what the rules are. Um, and we knows that people who don’t support her well, almost act like they’re afraid of her.
Erin: And so we took notes on that so that we could make sure that when we went into school meetings and we were talking about how’s Maggie going to be supported. You know, you need to be firm, you need to be confident, but you need to appreciate her and enjoy her. And you can’t just select that from a seniority list of staff. You really need to know who she is and so the result of all this was a lot of pages of brainstorming and this document called [inaudible] lifestyle plan that we maintained for number of years and I think I had lots of positive effects. It resulted in much more personalized and specific support. Like when they would tell me that Maggie had done something, I was able to kind of click through my list of what does good support look like? What is it that people do that’s good support? And what makes for a good day and what makes for a bad day?
Erin: And just ask “Were they doing things that we know make for a bad day, where people supporting her in a way that we know is good support?” or “Were they not honoring the things that she has told us are important to her?” The things that she’s really shown us that make for a good day and how do we correct it by changing what’s happening at school to really honor that rather than blame her when we did things that we know are not effective support. And when we put her through things that we know make for a bad day. And all of this resulted in a much more personalized materials, um, a lot more awareness of just who Maggie is as a person and her interests and her strengths. Um, we shared all of these, like all of them me kind of books to really help her share off, show off her interests.
Erin: Um, you know, we had t-shirts and toys for all the things she was most interested in so that it was just really visible, um, as someone who doesn’t speak. So it was just really visible what she’s interested in. And she found classmates and friends who shared her passion for things like high school musical and Justin Bieber. Um, and it definitely resulted in more appreciation for Maggie as a person. And I actually found a really fascinating research article. They just having this information about someone makes the support workers presume more competence that you presume less competence in someone you don’t know well. And if all you see is the outward appearance, what you really see as the disability and you really need help knowing the person in order to um, start to understand their competence. And we’ll talk more about presume competence. But what all of this lovely persons on planning didn’t do was I couldn’t see how it was resulting in giving Maggie more access to the actual learning of the classroom.
Erin: I felt like she was loved and valued as a visitor in the classroom, but that she wasn’t being included in what was actually being taught. And I could see by the time she was about seven that a number of her friends, we’re approaching her in the classroom rather than as a friend, they were approaching her more as their charity projects that we help Maggie because we’re good people and she’s helpless. So she needs us. And I remember walking into her class in about grade two, and watching what had been a close friend who had been at sleepovers and all kinds of things with her, kind of reaching out and taking her hand and making her do something hand over hand. It’s just like, okay, something’s really not working here because this attitude of Maggie been so helpless and this black hole of need is now becoming contagious and spreading to the kids.
Erin: So then I was really fortunate. We found a strategy that began to um, shift this. I went to a conference, it was actually a Canadian Angelman syndrome conference and Kimberly Gavin provided an overview of the work of social role valorization theory, the work of Wolf Wolfensberger. And, and just really taught me to emphasize the social role. So what we’d done before, it was a lot about what Maggie likes and what Maggie doesn’t like. But it was just a lot about what she likes. And I could tell people, I knew my kids really well and I could tell people what she really liked. But I hadn’t shifted it to really, I think of her as who she is, so who she is is a daughter. And what is it that daughters do and what’s the support you need to be a good daughter? You know, she’s a sister, she’s a big sister.
Erin: And what’s the support you need to be a big sister and what is it the big sisters do? And I have four little sisters, so I have a lot of knowledge about that. Um, and most importantly for school, what was it that we needed to understand of Maggie as a student? So if Maggie’s a student, not a collection of needs but a student, then what’s the support she needs to fulfill the role of being a student. And the way we figured that out is we ankle, what does a student do in the classroom? And what support does Maggie need in order to do it? And so the whole second half of this webinar is really asking that question, “What is it that a student does and how can we support them?” Um, and I also thought it was really important what social role theory made me think about was who’s the authority on a student?
Erin: Who is the authority on a second grade student? If you just go into a school meeting for a kindergartener or a grade two student or grade 11 student like she is now, you would think that the only people who have authority on students is teachers. Right? Um, but what we discovered was suitors actually have a lot of knowledge about what it is to be a student. Imagine if I only asked my mother who has a baby sister, what is it that big sisters do? Um, she could talk about it from her perspective as a mother and a baby sister, but I would really need to talk to other big sisters to get that information. And, and I realized there was nothing in the school system that asked us or encouraged us to figure out what is it the students do, what matters about what students do, um, from the students perspective.
Erin: And so we decided to just ask the other students. And I was really fortunate because, um, I’d actually been laid off and I was working part time at Maggie school and I had started a brownie unit, an all inclusive, uh, girlified unit. Um, and I was trying to make it barrier free. I wanted it any girl to be able to join. So there was no fees. We got grants for that and free snacks and it was right after school so kids didn’t have to have transportation to go there. And so I had a lot of opportunity to just ask the other students, um, what is it that you do today and what did Maggie do and what do you think Maggie thought of it? And I discovered this secret weapon to really understand what it is that kids think about, which is to be the carpool mom.
Erin: And if you have a bunch of kids in the back seat of your car and you’re driving, you would blown away by what kids tell you when you are the carpool mom. So just know that you’ve got this option of um, talking to kids by riding them in places, having kids in the same activities and drive the other kids because you get so much information in a way that you just don’t get if you’re sitting across in another table. And what I found, I started doing this when Maggie was in grade two, and what I found was actually really concerning. Some of the comments I heard with things like this, like they don’t know how to handle her. And so they make Maggie sit in a wheelchair. There was a lot of comments about not knowing how to handle and making her do things. There were also a number of students who talked about how the adults were afraid Maggie.
Erin: They were afraid of what would happen if she did things. They were afraid of what would happen if she touched things. They were afraid of what would happen if she walked around. Um, these are all quotes I collected. Um, after we started doing the social, well, work. Um, there was a lot of conversation about control things like, um, they only let a few people work with Maggie if the adults like to, then they would let you work with Maggie. And there was a lot of comments that really reflected authenticity. Like the kids know if what Maggie’s doing is real work or not. Um, and they knew that what Maggie was doing wasn’t real work because they had to finish their own work before they could go play with Maggie. But that was how they interpreted it. It wasn’t real work if you did it with Maggie because it didn’t count and it wasn’t anything like what they were doing, even though this was a kid with what was on paper, a fully inclusive placement.
Erin: And so when we started implementing all the strategies we’re going to talk about over the rest of this webinar, the messages I got from the other kids started to change. They started telling me that now other kids are walking over and they want to work with Maggie. They want to help Maggie, they want to read with her and they want to do work with her. Um, and I remember this one girl saying in the meeting that, “Well, now we do our work together”. And that just really told me that at least that year we had nailed something. Um, and so this was by grade four, so that took about two years to really make this shift. Um, and I thought it was so striking in around grade four and one of the students said that Maggie’s allowed to walk around. Now they really trust her. They trust her, decide, to decide if she needs a break.
Erin: Um, they trust her to decide if she needs to go to her sensory corner. Um, they understand now that before she’s going to sit down and do her work, she’s going to walk around and she wants to try to see what the other kids are doing and she just started checks in, um, and wants to get a sense of what the other kids are doing before she sits down to do her own work as well. So don’t hesitate to ask the students, what is this role and what is it that students do. And then I think that gets me to what very quickly became the next question is what if we don’t know if this person can perform the role of a student? Isn’t that really the issue? And kids have significant disabilities that, um, they were afraid. Well, if the other students are reading and the other students are writing and the other students were talking and the student can’t do it, then isn’t it the problem that they can’t perform the role.
Erin: And so I’ve got a few, a few responses for how we think about that. And the first is to make the least dangerous assumption. And if it feels like I overemphasize this, it’s mainly because I just think that it’s really misunderstood. You’re going to hear, hear a lot in our community about presume competence. And that concept of presume competence came from Anne Donnellan’s theory of the least dangerous assumption. And what Anne Donnellan once was saying was that if we don’t have, we really don’t know what is absolutely possible for so many of our students. We don’t know. We don’t have crystal balls. So let’s make the least dangerous assumption. The least dangerous assumption is the one that if it’s wrong, if it’s incorrect, it will have the least dangerous effect on long term outcomes for the students. So let’s say we make the assumption that a child can never learn how to read, which was the, the, the blatant assumption of, of my own daughter’s school team in grade two when I asked, “W”hen are we going to start working on literacy?
Erin: The first response was, “Oh, we don’t teach literacy to students like Maggie.” So a very dangerous assumption had been made. Now we don’t know if it’s possible for Maggie to become literate, but what we do know is that if we make the assumption that she can’t, then we’ll never even try. We’ll never even provide the opportunity and the instruction that could make it possible if it is possible. So that’s the least dangerous assumption is constantly asking ourselves, am I making a dangerous assumption? And it’s what led to what’s now the mantra of presumed competence. Presume the kids have the potential to learn because if we presume otherwise, and we’re making a dangerous assumption. The least dangerous assumption is always, but if a student is failing to learn, and Anne Donnellan really went into this back in 1984, if a student is failing to learn, look to ourselves, look to what we’re doing and ask ourselves, have we truly removed all of their barriers to participation?
Erin: What is holding them back? And you know, have we really have, we made sure that our assessment process is really figuring out all of the supports and accommodations that they need. Because if we haven’t unpacked those, then of course the student’s not going to be able to reach their potential. And the least dangerous assumption is that if the way we have always taught isn’t working and the way that we’ve been teaching the student isn’t working, then it’s up to us to ask, are these effective ways of teaching or should I go discover new ways? Because it’s a very dangerous assumption that a student isn’t learning because they’re not capable. It’s a less dangerous assumption that a student isn’t learning because we’re not actually using the most effective strategies. And it’s a very dangerous assumption that the reason a student isn’t making progress is purely because of their intellectual disability.
Erin: It’s less dangerous to presume that they have other support needs that we really need to unpack. So for example, my own daughter was not diagnosed with low vision until age eight and it was only because in a coincidence, um, I went to a school inclusion conference and met Clayton Eaton who was a teacher for the visually impaired and he actually approached me and said, “You do you know your daughter’s blind, right?” And I was like, “No, no, no. They thought she was fine when she was little bit, but no, she’s, she’s not like, she’s just supposed to wear glasses.” And he was like, “No, you, she is, she’s got no vision. She has all the behaviors of a child with very low vision. You really need to get her vision checked out.” If it wasn’t for that coincidence, we never would have had a teacher for the visually impaired assigned to Maggie to remove the barriers that her vision, what’s creating.
Erin: And when the teacher for the visually impaired came into the classroom, there were all of these things that Maggie had been doing. Like a teacher would talk to her and Maggie would keep her head down and the teacher would be up at the front of the class and Maggie wouldn’t look at her and they just said, “Yeah. You know, Maggie would turn her back on various adults all the time in the classroom.” And they were just like, “Yeah, that’s just because she’s so low functioning. She doesn’t understand it.” And the teacher for the visually impaired was the one who, all she did was pull the blinds and dim the lights. And what was happening is Maggie wouldn’t look into light and every time she had to look up at an adult, she had to look against the bank of windows.
Erin: And all she could see was this bright light coming into the windows. Um, and one of the things we discovered is that she has a lot of problems with auditory processing. And so she looks away in order to listen because if she’s looking and trying to listen at the same time, that’s just too much information coming in and none of these are things that would have then understood as barriers so long as we presumed that it was her intellectual disability. That was why she wasn’t making progress. Cause I mean complicated does not mean that we pretend the disability does not exist and I feel like this is actually happening in our parent community. I feel like I hear this from a lot of people. We’re just supposed to presume the child doesn’t have an intellectual disability. We’re supposed to presume that they understand everything we can think.
Erin: We say regardless whether we see any evidence, we’re just supposed to presume they’re not actually disabled. And I would argue that that is a dangerous assumption. If a child is struggling with, um, say auditory processing, if speech just comes at them too fast and it’s too invasive and they can’t process it and they need support, then presuming that they understand what we’re saying is doing them a serious disservice and it’s denying them the support they need. We need to recognize if kids don’t appear to understand what we say and we need to make the least dangerous assumption, which is that is not their intellectual abilities. Let’s unpack everything else. Let’s make sure that there’s other things that we can consider. If it’s an auditory processing issue, we need to slow down. We need to talk slower, we need to chunk what we’re seeing into smaller pieces.
Erin: We need to do things like amplifier of voice so that the child doesn’t have to struggle to hear us over all of the background noise, right? There’s very specific strategies we do when we understand that a child has auditory processing disorder. And when we just, when we misunderstand presume competence, we potentially deny them, um, those supports they need. Presume competing does mean that we need to avoid functioning labels because the concept that someone is high functioning versus low functioning is an absolutely useless construct to understand what supports someone needs. I know, you know, people who on paper are very high functioning with graduate degrees and they’re using all this technology independently, but they might still struggle with continence and need to wear adult diapers because their body, their neurology simply doesn’t tell them when they need to go to the washroom. And we live in a world that assumed that you’re low functioning if you’re not independent when it comes to personal care.
Erin: Um, and we’ve got people who completely are, but we just ignore their, the actual reality of what’s in front of us if we try to put it in the category of high or low. And we really need to avoid subjective descriptions, subjective descriptions like high or low functioning, cause that’s all in the eye of the beholder. Um, it’s subjective to pretend we have a crystal ball and we know what the future holds for any person. And my classic example is Stephen Hawking, if we were to just assess his physical body, he would is someone who would be described as low functioning. What made him so amazingly capable is that he had the support he needed, the barriers had been removed. He had physical support needs that were addressed with really high quality technology so he could be mobile and independent. He had significant serious communication needs that were met with the right technology.
Erin: I’m not arguing cause I feel sometimes presumed competence is like pretend that all of our kids are hidden geniuses inside the same old bodies. That’s not what I’m saying. I’m saying is we don’t know what’s possible until we have removed the barriers that are holding somebody back and making sure that they have all the support they need. Because on paper, Stephen Hawking is profound, was profoundly low functioning. It was his support, it was his accommodations, it was the fact that barriers were removed that made the difference for him and allowed all the rest of us to receive his contributions. So here’s where, um, this is what we’ll spend the rest of webinar, is understanding the participation model. This comes from Pat Mirenda and David Beukelman. Um, it’s very familiar, um, framework for, it should be familiar to anybody who’s, for example, a speech language pathologist. Um, I find it incredibly helpful for thinking about our students as students and asking what is it they need to do and what support do we need to provide.
Erin: What the participation model does is recognize that there are two general forms of barriers that might be holding kids back. What schools tend to focus on. What the medical community focuses on is this blue circle here that you see that says access barriers. Access barriers are the ones that are caused by the student’s disability. It’s the nature of their disability. It can be low vision and poor acuity. It can be, um, cortical visual impairment or how their brain processes, what they see. It can be their hearing. It can be their sensory processing, just how their body interprets all of the information that comes in through all of their senses. It can be physical and motor, it can be intellectual and cognitive. All of these are access barriers and what the participation model says is it’s our job to identify those and provide accommodation because none of them necessarily mean that somebody can’t participate in something.
Erin: They can still participate but only if we address their specific access barriers. And with the participation level above that I think is really unusual. When I look at most assessments out there is it also understands that just as essential is to remove opportunity barriers. The opportunity barriers have nothing to do with our kids’ disabilities. They are outside of our students. It’s how other people respond to the fact that our students have disabilities. It is their attitudes and it’s what they believe is possible. It’s the policies and practices. It’s the knowledge and skills that other people bring to supporting our sons and daughters. So we have to ask ourselves, what are the barriers to participating in this role of being a student? And we have to make sure we’re addressing both the opportunity barriers and the access barriers. Um, and I’ll give you some examples. Opportunity barriers, remember they have nothing to do with our kids.
Erin: Um, something that I just found a really fascinating statistic on, I can provide the research citation, um, but we can predict what students will be included in school based, not on their access needs. Right. Based not on the nature of their disability, but there’s one thing that actually lets us almost completely predict which students will be included. Not their disability, it’s actually, there’s a code. It’s their postal code because it’s the school that they go to. Do they, does that student go to school within a system that has, is really committed to school inclusion and to removing barriers and providing support? In which case we predicted very high rates of inclusion for those students. Or do they go to school in a system that only sees access barriers and doesn’t see it as their job to remove the opportunity barriers? The fact that your postal code or your zip code determines whether or not you’re going to be included proves right there, but it’s not our kids physical disabilities that’s really holding them back from participation as a student.
Erin: It’s the opportunity barriers that they’re up against. So you know, you’re looking at an opportunity barrier. If the school system has a policy that if students have this label, then they’re placed in this program. That’s a policy barrier, that’s opportunity barrier. A practice barrier is that, well we haven’t actually written it down but this is just how we do it. Um, it’s a practice barrier when we say, well, if you want your students have all the supports they need and they need to be in this program because the practice is that we’ve organized all those supports into this one place. A knowledge barrier is, this is what we know about how to teach students with this label and we don’t know any different and we don’t have more information. A skill barrier is when we might’ve heard about other ways to do it, but we actually don’t know how to apply it.
Erin: Um, and so you know, people have been to a workshop but then they just go back to doing it their usual way because it didn’t actually develop their skills. And attitudinal barrier is really the most dangerous because it’s, you know, you’re up against an attitudinal barrier when you hear that this student is too whatever for regular classroom. They’re too severe. They are too disabled. They’re too, as soon as you really hear the word “too”, that tells us that you are up against an attitudinal barrier. If you’re up against an attitudinal barrier, you can’t solve an attitudinal barrier by bringing people articles. I see us do this as families all the time, like I’m just gonna bring you more and more research and more and more resources because you’re seeing my child is too disabled and that means you must just not have enough information.
Erin: It’s true though that no information doesn’t generally remove attitudinal barriers and information may not develop a skill. If your school system has a policy that this is how we organize supports, then inflammation might not address the policy, at least not with the people who actually have the power to change the policy. We can only be effective advocates and support our kids to actually participate as students if we can identify the barrier. If it’s a policy barrier, we need to go to the policy makers and figure out is this an attitude, is this about knowledge, is it’s just about practice. And now how do we unpack it? How do we actually change attitudes? So those are opportunity barriers. So, so this last part, what I did was I tried to understand all of the different places, all the different environments in the school where our kids are trying to be students and then see if that helped us think about what are the barriers they’re up against and how can we address them so that they are supported to participate.
Erin: And I have identified what I think is five different, um, environments. And I might be completely wrong in this. This is just my own best guess right now. And I think the first and the most important is the physical environment. And you can see I’ve shaped it like a funnel because if you don’t address one level, like if you don’t solve the physical barriers to a student being in this space, then you can’t even begin to work on any of the rest, right? So it has to be physically accessible. Students have to be able to move around in that physical space. They have to be able to be there and they have to be able to be present. And so in the physical environment, if you looked from the cone over to my little table, then in order for them to have access, we need to meet our kid’s needs for movement and mobility and movement might mean this is just a kid who needs to walk a lot.
Erin: Right? Um, I think Shelley Moore talks about, um, one teacher who used masking tape to make a racetrack around the edge of the classroom so that a student could move around. That teacher was addressing a physical access need by understanding that need for movement being very important and creating a track for the student to be physically in present but moving, um, in the classroom. But also sensory needs. If a student finds a classroom, you know, way too noisy. If their vision needs aren’t being met so they can’t see the materials. If we’re not helping them process the auditory information, if it’s too noisy, they’re not being provided ear defenders. Those are all access needs. The opportunity barriers is things like placement. Our students can’t participate with students if they’ve been placed somewhere else where there’s a different idea of what a student does. Um, and the service delivery model that the school system uses.
Erin: If they only put their supports in one physical environment, then there’s automatically opportunity barriers to the other physical environment. Um, if we’re looking at language, so if we’ve made the physical environment accessible, then our kids go down that cone and now here’s where they might run into the next set of barriers. And I’m calling these language barriers. Language barriers mean you can’t participate in the language environment, um, where you’re learning. If you are a non-speaking students and you were in a classroom where everyone is speaking, then first of all, you’re going to need technology to support you to communicate. But you also need a model of language that allows you to participate. Um, and so we talk about AAC and we’ll talk about AAC modeling and getting the teachers and the classmates and everybody using the communication system. That’s what I mean under opportunity barriers for language, which is a shared symbol system.
Erin: You can’t participate in the language environment of a classroom if you don’t have a shared symbolic way to do it. And so if you can’t speak and join the speaking environment, the speaking language environment, then um, we need to get more people using your scene communication system so that you can benefit from that and learn from that and be part of it. And then if we adjust the language barriers, I think then we get to social barriers. And the biggest issue with social barriers is proximity. Social barriers means being able to participate in this social environment of the classroom. And in order to do that, you need to be next to your kids, right? You can’t socialize with somebody who’s on the other side of the room. You definitely can’t socialize with somebody who’s on the other side of a middle aged educational assistant, right? And I’m not, but then middle aged people, I’m definitely one of them.
Erin: But you can’t participate in the social environment, which is the social relationships of other people your age. If you’re not in close proximity to your peers and if they haven’t been readied, there’s a lot of kids need some support in order to be ready. They might eat some information and other explanations of what’s going on. They need to be invited in. They need some facilitation of how to do that as kids have never been included before. Then they may not know how to interact because they’ve learned all these norms of our society around not actually interacting with people with disabilities. Um, and the student themselves need some support and that support and come from a variety of places. It can come from other peers. Lots of things that we need to make sure we’re supporting. Um, participation in that role of students in the social environment of students.
Erin: And now I think only now do we actually get to the learning environment of all of the students. Um, and that’s where, again, it’ll depend on that students, but they might need, they’ve got intellectual disabilities and they’re going to need some more specialized support to make sure that they’re getting really timely instruction when they need it so that they can access what’s happening so they can understand what’s happening and know what’s in place. And we know how to do that. There’s lots of research about how to provide this information, um, so students can be part of it. If our school teams don’t know how to make the instruction in the classroom accessible to our kids, then we’ve got knowledge barriers and skill barriers. But that information is out there and we can go find it. And then I think the last environment is kind of the Holy grail of the role of a student is actual achievement actually having learned something for all this time in the classroom.
Erin: And for that we need accessible assessment. Assessment that it doesn’t rely on a motor response for kids who have a motor disability or it doesn’t rely on a verbal response for kids who can’t verbalize. But I think it’s kind of the last of the environments for our kids to really be students in the classroom. Um, what I see school teams do is put much more focus on achievements without having actually unpacked the rest of the barriers that are in front of us. So let me just give you a few examples of what this can look like in terms how we can identify and remove the barriers that might be holding our kids back. Where we apply it is we need to define the role, really ask what it is that students do in this space. We need to identify their access barriers. We need to acknowledge their access barriers.
Erin: What is it? Find out what they are, investigate them, ask, are we making any assumptions? Are we just assuming that the child isn’t doing something because they’re too something? Um, have we really investigated their sensory needs, their sensory integration needs? Do we know that we really know all there is about how they use their vision, how they use their hearing? Do we know when we hear terms like intellectual disability or cognitive disability? Do we know specifically what that’s talking about? Is it um, struggles with abstract reasoning, um, that would be made that we could address if we just provided physical and visual materials so that things are more concrete and less abstract? Is it problems with short term memory was working normally and so information needs to be chunked into smaller units because the student has an access need around taking in too much stuff at one time and need it in smaller pieces?
Erin: Is it long term memory and memory recall? Right? We need to know what this is. These are our kids access barriers and there’s hopefully information in their assessments that helps us understand this. And if there’s not and there’s probably an attitudinal barrier that is prevented us from doing the assessment that’s prevented the school system from doing the assessment to really unpack it the same way that my own daughter was. No one presumed that we should unpack her vision needs because the assumption was it was just her intellectual disability. It actually turned out when we found out she was low vision and I went back to her ophthalmologist and said, “Why didn’t we know that she has low vision?” He said,”Well, of course I knew she had low vision, but what does it matter? She’s just in a life skills class.”
Erin: I mean, he literally, it was actually the physician was the one with the, with the attitudinal barrier that prevented the school from getting the information they needed about her vision. He was like, “It’s not like she’s learning how to read.” Right? He actually said that, medical doctor. So that tells us, have we identified the opportunity barriers? Have we, do we know what opportunity barriers are holding our kids back and who we’ve been able to unpack? Is it attitudes about what’s possible? Is it the different policies and practices in places of the knowledge that the team has? So as we just think about the different roles of students, let’s think about the fact that a student is a reader. Students go into classrooms and they read information. So if we’re thinking about the role of students as a reader, then to address their physical access needs, we’re going to make sure that they have books and texts that they can actually see and we might need to adjust things like the font size and the contrast.
Erin: But we’re going to make sure that they can visually access the physical environment that a reader participates in. We’re going to address their motor barriers because maybe they need digital books instead of paper books, right? We’re going to find out what they are, what their access needs are, so that they can access the physical part of being a reader. And then we’re going to address the opportunity barrier, which is making sure that our kids actually have things that are worth reading. Because a lot of beginning readers and kids who are just learning about reading do not have access to texts that’s actually worth spending any time on. So, so then you see how identifying the barrier it tells us, “Okay, I need to find out how I can create a large library of interesting books and texts for my students”. That is far more doable, um, than just simply saying, “How do I teach my kid to be a reader?”
Erin: So then how do we support kids as readers in the language environment? We need to make sure they have a communication system where they can comment on text and respond to texts. That means they need a communication system and it needs to be a shared symbol system so other people are using it. You know, while kids are reading in a classroom, they’re also socializing, they’re talking about the book, but they’re also talking about other things. So we need to make sure that while our kids are reading, they’re in proximity to other kids. And the other kids, if there’s things like assistive technology, um, that needs to be used and those other kids need to know how it works so that they’re ready to support our kids. Um, and we need to ask maybe there’s other technology that our kid needs to have in order to be part of their, the social part of being a reader.
Erin: When it comes to actually learning how to read and being supported in a learning environment of a reader, we need to understand our kids motor needs and all of their vision and their memory issues. So this is where things like psycho ed assessments are coming in, um, and theoretically would be helpful. This is where things like just observational assessments, trying to unpack our kids’ biology so we can support them, which gets us to, if kids can actually benefit from learning, then they can start demonstrating achievement. Similarly, when we’re supporting their kids to be writers, that means just that participate in the physical environment that a student is in when they write, when that’s what they’re doing is writing. They’re selecting words, they’re selecting letters, they’re selecting illustrations. Those are all access needs. And so our kids need access to them too. Um, they also need the opportunity, which is building in those daily routines where they’re getting the practice. Um, you know, it’s an opportunity barrier if you don’t have access to a keyboard where you can actually select letters.
Erin: Um, you need to be able to participate in the language environment. So you need a way to generate language and tell stories which means you need an AAC system and a shared symbol system. We need to be able to participate in social environment because when we write, we don’t just write and it’s a tree that fell in the forest and nobody saw. When we write, we share it with other people. And so peers need to be able to see what it is we’re writing and we need to see what other peers are writing and we need to be able to share our writing and then get into things like how do kids actually learn how to write, which is beyond the scope of today. And this last example I’ll give you is just supporting a student in the role of being a drama students. Right? This has been one of my daughter’s favorite classes in high school, um, to be supporting the role of drama student.
Erin: She has to first physically be in the class. So that means that she needs to be enrolled. Her placement needs to be such that she can be enrolled in the drama class, but then we have to address her sensory needs. We have to address her vision needs, we have to address her motor needs because they did a bunch of changes to the drama classroom over this last summer and they actually introduced all these new barriers in the physical environment and those need to be recognized so that she can actually be in that physical space. In a drama class, you share a lot of ideas. It’s very social. So she needs her communication system and that shared symbol system and a social group of peers to work with and get feedback from. And she needs support with things like speech production. She needs support with things like managing her impulsivity, um, so that she can really be part of the social environment.
Erin: But that’s where kind of that, that motor planning and dyspraxia need really affects her with very impulsive movements. And then she needs to be able to be part of the learning environment, which means we might need to explicitly work on her background knowledge around what is drama and what do we do and how about this production. Have we really, um, does she had the information that she needs and do we have the technology in place so that she can hear everything that’s happening in process? Everything that’s happening. So, so just to wrap up, I’m going to take us back to the beginning, when we first met Maggie and we got that long Angelman diagnosis list. And I just want you to think about those first assessments that you got and ask, is there actually anything we can glean from it? It’s not presuming competence to pretend we’d never got that diagnosis, um, or just set it aside, but what does it tell us?
Erin: If you’re like me and you heard that the student might never walk, then what does that tell us about their motor needs and what does that tell us about their opportunities to physically explore their environment and physically participate? Um, if we heard that they’ll never talk, then what does that tell us about their access needs around communication? But also are opportunity barriers around communication cause they need that shared symbol system. If we were told they would never read or write and that tells us that there’s cognitive barriers and we need to find out what those are and understand them so we can and support them and then unpack it because you’re going to find things like here under Angelman diagnosis. The last thing we were told is that she would never be more than a toddler and seriously like WTF! That actually, that, all that tells us these things are pretty serious attitudinal barrier that would result in a doctor making that kind of comment.
Erin: When I then unpack to Maggie’s actual school assessments, I found that words like severe and profound and pre anything really don’t tell us anything. Um, even the label of being a certain age equivalent or being in a certain percentile, it doesn’t tell you anything. You need to unpack that further to find out what are the actual access needs. And a lot of times when I look at psycho ed assessments, what I see is a lot of attitudinal barriers more than anything else because they’re not actually getting specific enough to remove barriers and put the right supports in place.
Genia: Thank you so much for joining me today. I really hope that you got a lot out of Erin’s presentation about removing barriers to learning for kids with disabilities. I think it’s really, really helpful and I hope you did too. If you’re interested in more information like this, if you feel like this is important and helpful, then it is really helpful to get the information out to other parents and educators. And one of the ways to do that is to review this podcast episode. So wherever you are listening to this, if you can go to the review section and leave a review telling people why this podcast is important and how it can help them support the kids with disabilities in their lives to build good, inclusive lives in community. Thanks very much. Until next time, I hope you have a great week.
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Special thanks to Erin Sheldon for joining me this week. Until next time!