S4 Ep_036 Creating the Down Syndrome Inclusive Education Guidelines, with Emily Mondschein of GiGi’s Playhouse, Buffalo NY, Pt.3
What does inclusion mean, in the education setting? Is there data that supports inclusive education for individuals with Down syndrome? Emily Mondschein, Executive Director at GiGi’s Playhouse Buffalo, and member of the National Down Syndrome Society (NDSS) and Down Syndrome Education International (DSEI) inclusive education working group, explains the story behind the first inclusive education document for Down syndrome in the United States, which she also presented to the United States Congress. We discuss:
Why inclusion in the education setting is particularly important and powerful for learners with Down syndrome;
How Emily became acquainted with Professor Sue Buckley (UK), the foremost international expert on learning, literacy, and language for individuals with Down syndrome;
The NDSS and DSEI working group’s adaptation of the UK’s All Party Parliamentary Group on Down Syndrome (APPDSG 2012) inclusion guidelines for the United States;
How the Down Syndrome: Guidelines for Inclusive Education document can be used on the federal, state, county, school district, classroom, and family levels;
The profound and measurable ways that inclusion benefits typically developing students and the entire community.
Bio:
Emily Mondschein is the proud mother of two boys, one who was born with Down syndrome. She has a master’s degree in education and has founded 2 not for profits that serve individuals with Down syndrome. She currently serves as the Executive Director for GiGi’s Playhouse in Buffalo, New York. She is a member and leader on multiple councils, both local and national, that support individuals with disabilities. Emily works alongside medical providers to ensure that patients with Down syndrome are receiving optimal medical care. She also provides education to clinicians around best practices for delivering the prenatal diagnosis. Emily is passionate about inclusive education and supports schools in providing these learning environments. She has advocated to congress on behalf of individuals with Down syndrome and is currently working on legislation to better impact the lives of the disability community.
“
There's such differences from school to school. I mean, you could be in a large district with five elementary schools, and the one elementary school is amazing with inclusive practices, and bringing in Down syndrome specialists to teach the staff.
And then you could go, you know, 20 minutes away, and that school is <distressed sound>, they're not doing anything!
And there's just no oversight on the entire thing. So, having this classification would sort of bring more research, it would bring more data, it would bring more specialists, all of it. So, that was kind of, you know, a big part of that for us.”
-Emily Mondschein
Transcript
Season 4, Episode 36 (Pt. 3 of 4) Steps to Inclusion for Individuals with Down Syndrome, with Emily Mondschein of GiGi’s Playhouse Buffalo NY
Emily Mondschein:
There's such differences from school to school. I mean, you could be in a large district with five elementary schools, and the one elementary school is amazing with inclusive practices, and bringing in Down syndrome specialists to teach the staff.
And then you could go, you know, 20 minutes away, and that school is <distressed sound>, they're not doing anything!
And there's just no oversight on the entire thing. So, having this classification would sort of bring more research, it would bring more data, it would bring more specialists, all of it. So, that was kind of, you know, a big part of that for us.
[Rhythmic sounds of electric train pulling into station]
[Subway chimes arpeggio played on mandolin]
Cevan Castle, host:
Welcome to Towards a Kinder Public, a podcast dedicated to designing kinder public space that better meets our interconnected needs. I’m Cevan Castle, and along with Annie Chen, we are Kinderpublic.
This episode is continuing the 4th Season of this podcast, which takes a close look at the interweaving of social, spatial, and organizational exclusion.
Emily Mondschein is a leader in disability rights in the United States and the Executive Director of GiGi’s Playhouse in Buffalo, New York. She joins us to discuss her work on the Down syndrome inclusive education guidelines for the National Down Syndrome Society in cooperation with Down Syndrome Education International. Emily is a major contributor to the guidelines, presented on the guidelines to the United States Congress, and provides support and direction towards their implementation.
These guidelines are the first of their kind in the United States, and were modeled after inclusive education guidelines for Down syndrome in the UK, which were developed with the contributions and research of Professor Sue Buckley, the foremost international expert in cognitive development, language and literacy for individuals with Down syndrome.
The US guidelines explain the strengths as well sensory, physical, and cognitive needs of learners with Down syndrome, including that 80% of learners have a hearing related disability and 80% of learners have a vision related disability. The document provides evidence-based and research-based instruction principles, interventions, and supports.
The guidelines are intended to provide a framework that can be adapted by the US Department of Education, state and local education, early intervention, and educators, administrators, and specialists, to advance education, and so that inclusion may be pursued confidently and capably.
But, they are useful to everyone- the learner profiles and supports are applicable to all early, preschool, and school age learners with Down syndrome, regardless of their specific learning environment.
In the US, access to education, including literacy and math, has been, and in many places still is, restricted for individuals with Down syndrome. This document is a crucial step for disability inclusion in the primary public space of children, which is the education setting, and we are very honored that Emily is with us to talk about this in more detail.
All of the professionals, organizations, and documents that are referenced are linked in the episode notes.
We would like to ask for your help- share this episode on social media, share the inclusion guidelines. Help us raise the visibility of this information, that’s one important step you can take to advance our shared mission of disability inclusion today.
[Subway chimes arpeggio played on mandolin]
Cevan:
Thank you so much for sharing more of your time with us today, and bringing your technical expertise on the “how” part of disability inclusion.
I want to begin this portion of the conversation by acknowledging that saying that we support disability inclusion and actually doing disability inclusion are two very different things- you pointed this out beautifully in our previous conversation.
The inclusion of disabled individuals in our public spaces requires intention and an effort from all of us, and we may have to adjust our conventional ways of doing things to make this happen, but if it's our shared value, then it's our shared responsibility to follow that up with the necessary actions.
You have a video called ‘Why Inclusion Matters’ for the Undivided Channel on YouTube. And on the topic of inclusion in the general education setting, you stated, “Inclusion is particularly important for children with Down syndrome and it's particularly rare for children with Down syndrome.”
Can you define what inclusion means in the education context and why inclusion with their neurotypical typically developing peers is so important for kids with Down syndrome?
Emily Mondschein:
Yeah, so, inclusion is when a student with a disability is included within the general education classroom, and the general education setting, and has equal access to the general education curriculum.
But at the same time that individual with a disability has individualized learning goals and they have accommodations and modifications in place, so that they're able to access that general education curriculum.
I think it's important for individuals with Down syndrome- all disabilities- to be included, but we have a lot of research and data around the fact that individuals with Down syndrome tend to have strong social strengths. So, that being the case, peer modeling is particularly important for this population and they tend to learn more actually from their peers than from their educators. So we need those strong peer models.
Also, people with Down syndrome are very strong visual learners, so we need to see positive learning styles going on around us.
People with Down Syndrome also, almost a hundred percent, have speech deficits, so I mean what do you do with an English language learner, for example? You don't immerse them in a place where they're speaking the same language as everybody else, their native tongue. You put them in a setting that is the language they're trying to learn. So it's really important that we have those rich language models for individuals with Down syndrome as well.
People with Down syndrome. I also see quite commonly, students are very smart with this social strength comes this understanding of how people work. I believe. And I've seen them work the system, so I've seen them sort of revel in this <laugh> state of being the underdog or sort of able to just fly below the radar, or in a more segregated setting where our standards are lower and we're not pushing for the same level of excellence as we are in the gen ed setting. The student with Down syndrome will embrace that, and enjoy, oftentimes the relaxed slow pace.
And they're also very cute people. How many times do you hear, “Oh, your child is so cute!” They love people with Down syndrome, but with that love also comes this ability to not push them as hard or sort of let them skate by. So it's really important that we put them in settings where the standards are high.
Cevan:
Yeah, that's a really good point. All of those points are really good, but I’m particularly <laugh> noting your comment that the expectations are lower and there's a social dynamic <laughing> or a relationship dynamic to keeping the expectations higher.
I remember being in a meeting about placement for my child with Down syndrome and I was being assured that the general education setting, that track was inappropriate and that my child should be in the segregated classroom- uncategorized, all disability classroom- where he would be doing puzzles and he would really enjoy himself! <laughing> While the other kindergartners were on a math track, I was told that they were on a math track that he would be incapable of, and it would be better for him to do puzzles. <laughing>
Actually, I think it would be better if he does math, but… <laughing>
Emily Mondschein:
He can do puzzles at home.
Cevan:
Right.
Emily Mondschein:
Yeah. Yeah, it's a real thing. And I talk to families and sort of do this work where I try and help them gain access to these more inclusive settings, but I've heard all kinds of stories of, in the self-contained setting, the child's able to just take a nap because the child is tired.
That would never float in a general education classroom and had that child been in the general education setting, they would've worked on building stamina and energy too, because yes, people with Down syndrome do tire more easily, but we don't have the luxury of letting them just sleep all day and play on iPads and relax. These are goals we need to work on, to build strength and that's just a little micro example, but…
For myself too, I speak of being on the inside, and often I would go into self-contained or segregated settings and I'd look around and I'd be like, it's so relaxing in here and everyone's just kind of doing whatever. It almost felt like a very separate environment, or almost could have been a place outside the school, where there’s just not a lot of oversight.
And you see it too, a lot of people with Down syndrome, they're not potty trained in self-contained settings “because they have Down syndrome, they're not going to be potty trained.” Or they're just “very low”, quote unquote, but you put that same kid in a general education setting and they will come probably with an aide and that aide will put them on the potty every 40 minutes to an hour and within a year that kid's going to be potty trained.
Cevan:
Mm-hmm.
Emily Mondschein:
Not that, you know… It's just the reality of the difference in settings.
Cevan:
I would like to talk in more detail about the barriers to inclusion in schools, because you mentioned that you work to help parents access inclusion.
Drawing on your dual expertise as both a former educator and the parent of a child with Down syndrome, you are undertaking an incredibly important and urgent update to education procedures right now, which seeks to dramatically impact and update our state and federal provisions on the rights of disabled individuals- specifically with Down syndrome- in schools.
And schools are the primary public domain of children, of course, so this is very impactful work that you're doing.
Can you explain the new inclusion guidelines that you're working to establish? How did they come to be, and who are your partners on this initiative?
Emily Mondschein:
Yeah! So Sue Buckley- I don't know if you've heard of her- but she is a researcher and a psychologist, and just a brilliant woman, who is from the United Kingdom. I believe she really revolutionized what we came to know about how individuals with Down syndrome learn.
And in the eighties, she really started doing extensive work around reading, especially at the early levels of development, and found that was a particular strength for individuals with Down syndrome. Reading.
So she created- I believe they call it a charity in the UK- called Down Syndrome Education International. So there's the United States branch and then there's an international branch as well. And sort of created these programs that schools and parents could use to learn more about how their children with Down syndrome learn and develop.
So I started doing her courses, and I took one course in particular and at the end, it was on inclusion, a whole module on inclusion, and it was just so interesting to me. And she talked about in the UK how they created this guidance document, A-P-P-G-D-S, the All Party Parliament Guide to Inclusion for Students with Down syndrome, I believe was the name.
It was a call to the government, but it was also a research-based guidance document on inclusive practices for students with Down syndrome in the United Kingdom, and they have much higher rates of inclusion in the United Kingdom, and this guidance document was helpful in particular students with Down syndrome.
So, I reached out to the National Down Syndrome Society and I asked them, “Do we have anything like this?” And we really don't in the United States, we have no guidance document for students with Down syndrome. And I explained to them the course I was taking with Sue Buckley and they said, “Hey, if you can get Sue Buckley on board, it would be amazing if we could adapt these guidelines to the United States.”
So I went to Sue Buckley, and she of course was willing and able. She's the kindest, she's… she’s a fighter, she's strong, she's been in the game for a long time now, she's still going hard, and she's not giving up, and she definitely was on board.
So it was a very long time it took to re-adapt this document because obviously schools are extremely different, languages different, everything is different, and times have changed- it was an old document. So we spent a good four to five years working on this and then released it. So that's kind of the story about how that came to be.
Cevan:
And am I correct, is this something that would be applied to both federal policy and state education guidance, or how do you see this being used?
Emily Mondschein:
So, you know, we had some calls to action in the guidance document for the federal government, and you know, we didn't necessarily <laugh> advocate for them to reauthorize or open IDEA because, sort of like, the devil know is better than the one that you don't.
Cevan:
<laughing>
Emily Mondschein:
<laughing> And the current status is that LRE is very strong, so God forbid it reopened and anything like that change, because it's so important.
But if it does reopen and things do change, or if there's a way to create smaller changes without reauthorizing the whole thing, we felt it would be really beneficial to have a category of Down syndrome under the classifications that exist under special education.
And then with that additional category, we would also like to see some supports. And kind of, the thought is that, these supports would naturally develop because the category is in place.
So there's more importance now around learning about educational and developmental outcomes for students with Down syndrome. There's more importance around developing an oversight committee. Maybe there will be more… Oh gosh, there's such differences from school to school. I’m sure you’ve seen this… I mean, I know you've seen this, but you could be in a large district with five elementary schools, and the one elementary school is amazing with inclusive practices, and bringing in Down syndrome specialists to teach the staff. And then you could go, you know, 20 minutes away and that school is <distressed sound>, they're not doing anything.
And there's just no oversight on the entire thing. It's sort of a free for all.
So having this classification would sort of bring more research, it would bring more data, it would bring more specialists, all of it. So, that was kind of a big part of that for us.
And, the dissemination of this guidance document to schools across the United States, instead of picking at it slowly from the bottom up. Really, a top down approach was what we hoped- both going on- doing a grassroots, as well as top down.
And the federal government, I can say, I know from experience, isn't going to send out a guidance document top down that has organizations on it. So, because it would look like they were advocating for one over the other, as far as not-for-profits go as far as NDSS as opposed to NDSC or any of that, like they're not trying to sell a not-for-profit.
So, my hope would be that they would take this guidance and sort of create their own document. And I did go to the United States about that- the United States government- and we had some good conversations about it. So. That's sort of… nothing concrete, except for that they were going to put this guidance document on their databases so that people could access it in the world of education. That was the biggest thing that came from it.
Cevan:
Mm-hmm. How are they looking at sharing that information?
Emily Mondschein:
They have a database called Iris, which has all kinds of educational modules, in particular that colleges use with their students to teach. So that was one. There was a Parent to Parent national database that they wanted to put it on as well. And, yes, so…
Cevan:
I see.
Emily Mondschein:
Look, but the federal government, again, LRE is what they support under IDEA, but LRE still supports the full continuum of education, you know? The 6:1:1 to the 8:1:1 to the 12:1:1 to the inclusive setting. So it can be murky. That little “least restrictive environment” term can be very murky and can go either direction, depending on what side of the coin you exist.
Cevan:
Right. Right. So, just for anyone listening that isn't familiar with the term LRE, that is the “least restrictive environment” term that you just mentioned, which deals with how a student is placed, what classroom, and you can say it better than I can, but the supports that are in place to make that placement possible.
Emily Mondschein:
Correct, yes.
Cevan:
So that's really interesting. I've talked to people in a number of different positions who are either for a kind of document like this guidance, or against it, because they feel that it would be too confining then or prescriptive.
But, speaking from my own personal experience in my own attempts to advocate for my child and inclusion, I was told by a senior education administrator that the general information I brought to the table around this specific disability- and I shared that information due to the wild lack of precision in determining which disability supports might be appropriate to help my child access an inclusive education- I was told that learner profiles were not the way that special education works, and it does not help us to understand Down syndrome or create a better array of supports, and we should instead handle individuals with Down syndrome on a case-by-case basis.
But I feel like, you know, my own story is probably reflective of a lot of stories in that, then we proceeded to not work with a case-by-case basis. And some of the most crucial supports were never made available, and we certainly did not use evidence-based practices in thinking through those supports, and the kinds of outcomes that were possible.
So, I want to acknowledge that there are no monolithic disability communities, and all individuals are unique in their own experiences, but I think that we can probably all agree that disability profiles can be useful, and important, and necessary.
And some essential disability supports today were actually innovations or developments that occurred through disability self-advocacy groups. And that was in no way an outside-in sort of approach. So I think curb cuts are a very good example of this, as is the use of American sign language or ASL over lip reading training…
Emily Mondschein:
I was just going to say, it sounds to me that sometimes people would just rather bury their head in the sand because it's too much work to learn about a profile. For example, we're not sitting here saying all people with Down syndrome are happy. All people with Down syndrome will plateau at a certain age. All people with Down…. we're not saying any of that.
If you look at the profile, we're saying 80% are impacted by vision issues. A huge percent are impacted by hearing issues. We have short-term memory, there are visual strengths, there are social strengths. These are pieces that a good administrator will say, “Oh, I didn't realize that the presence of an extra 21st chromosome is a medical piece that's actually impacting education, so maybe this kid can't see, even though we have him in the front row, maybe this individual can't hear. Maybe we need a teacher of the deaf to come in and do an eval.”
This knowledge is power, and I have also been told by- sadly so- advocacies in the realm, that this was too much information and it would make it overwhelming for educators to see this. And to me, that is just the silliest thing I've ever heard. It is like burying your head in the sand and saying knowledge isn't power. We're not saying that all 10 of these most commonalities among the population happen in every individual with Down syndrome.
But we're saying, “Hey, keep this on your radar when you're putting this child in the classroom just to make sure when you're troubleshooting behaviors, or exhaustion- the fatigue we talked about- that you have this arsenal of the profile in your back pocket, so you have some clue as to what you're doing.”
Part of why I did this, went through all this, is so that I could start saying to people, here, take this document, read about it, learn about it, and then it'll be easier to work with my son.
Cevan:
Yeah. It's really incredible. It's hard to overstate the impact of your work, and if people are aware of this, and can make use of this document, you will radically change the course of the lives of individuals…
Emily Mondschein:
Well, thank you.
Cevan:
Who are being deprived of learning.
Emily Mondschein:
That’s my hope. And that's the biggest thing, right? You just found out about it, and it's been around for a bit. So how do we get it out there? How do we really disseminate the information? How do people learn more about it?
It's tough. I think it takes time. It takes people like you though, who are shining a light on it, you know, because it is, it's a much needed resource.
And I will say, even if your child or your student or whatever, is in a self-contained setting, none of these things are going to change! These are the things that you need to know around educating and getting… we can all agree that the least restrictive environment is in the law. You are legally obligated to provide that as an educator. So, if they are in the 6:1:1, you had best be working to get them to the 8:1:1. If they are in the 8:1:1, the 12:1:1.
All of these things though, should be applied in any setting, or they won't be the least restrictive environment. It will be stagnant.
Cevan:
Mm-hmm. And for people who are not personally familiar with these self-contained classrooms- the classrooms that I refer to as <laughing> segregated classrooms- the 8:1:1, 6:1:1, or 12:1:1, this refers to the number, smaller number of students in the classroom is what I want to say. And then a teacher and an aide, is that right? Correct.
Emily Mondschein:
Correct.
And everybody in that classroom has an IEP, so an “individualized education plan” that they're following. So they have some type of disability, as well.
Cevan:
And what's important to know is that those are not all the same disabilities, right?
Emily Mondschein:
Correct. Correct. Yes.
Cevan:
So, the teacher in that classroom has quite a challenge, because the things that are being supported may not be uniform across the kids in that classroom. So, you might have…
Emily Mondschein:
Yes.
Cevan:
…Very difficult time meeting the learning challenges and the supports necessary across many different disabilities. Right?
Emily Mondschein:
Yeah, it's a huge challenge. And I actually, I just wrote an article for our newspaper in Buffalo, New York, and it was about, I think parents- and I am seeing this more and more- parents think that by putting their child in these settings, they're going to learn more. They're going to get more attention, they're going to be safer. And I think the unfortunate thing is that they're going to learn less, for the reasons you just said. Because we can't offer a robust curriculum at every child's… and they're all different ages on top of that, so.
Cevan:
What? Really? <surprised>
Emily Mondschein:
Yeah, like, sometimes it might be like, K, one, and two.
Cevan:
Really?
Emily Mondschein:
Yeah.
Cevan:
I did not know that.
Emily Mondschein:
Yes. So, there's that piece as well.
And oftentimes, you know, our.. especially students with Down syndrome, they require an aide, but when we put them in these settings, especially the 6:1:1 or the 8:1:1, they say no aide is required, because they're in a smaller setting. But…
Cevan:
Mm-hmm. I got that.
Emily Mondschein:
Yeah, right. Right. I've heard so many people have gotten this.
Meanwhile, the child's not potty trained, needs frequent reminders to stay on task, and you have a teacher and what- two aides- handling these complex learners at all different levels. So, in reality, your child's getting less support as well. It's sort of this piece that you wouldn't really understand unless you were on the inside and saw it at work, or.. yeah..
And I think parents just feel safer and they don't think their kid is… there's this, also this belief that we have to be smart enough to be in the gen ed setting. And I think that's the crux of it all. You don't have to be at grade level. It doesn't matter if you're three reading levels below grade level, you just need to progress. We need to see growth in some areas. You need to be just working towards your goals on your IEP, but you know, parents think my kid is too low to be in that classroom.
And there's so much misunderstanding and miscommunication, and people just don't realize what goes on.
Cevan:
And that's where the aide comes in, right? So you have, in a general education setting, you would have the aide for the individual who is needing extra supports…
Emily Mondschein:
Correct.
Cevan:
…To do their best at meeting that material in their learning.
Emily Mondschein:
Yes. Yeah, and that aide should be trained, because again, we do have a situation where we have a complex learner. So, just like a teacher should be trained, just like we have this conversation, these guidelines are so important to the aide who, under the guidance of a trained educator, can learn how to break down tasks, keep the child engaged, keep them working, keep them motivated, take them to the bathroom, but also slowly, slowly, slowly taking steps back.
And ultimately, always the goal is for them to become independent, but this person is just a one-to-one to really help that because the person with the disability has challenges with it.
Cevan:
And so just to clarify, the disability supports that you discuss in the IEP are actually the supports necessary to raise the individual up to their best ability, general curriculum demands, right?
Emily Mondschein:
Yeah. Right. Whatever those demands are, you know, those supports are in place so that they can access them. They might be modified, we can modify those demands as well. We can change them, you know. That shouldn't be the first step. I think we should provide accommodations first. Accommodations are sort of the tools to help you be able to do what everybody else is doing, you know?
Cevan:
Mm-hmm. And so within the general education setting- I'm sorry, I just want to make this very clear for people who are not personally familiar- but within the general education setting, there is differentiation happening anyway, because you do have people who are excelling in certain areas of the curriculum, people who are hitting an average perhaps, and you have people who are considered typically developing, but are not meeting the average of the achievement level, right?.
Emily Mondschein:
You should have differentiation happening. But again, that's not always happening either. But that's why inclusion is so great because it forces the educators to differentiate, and it provides learning opportunities for everybody in the classroom, not just the individual who's there who has, you know, we're talking about Down syndrome- so not just the student with Down syndrome- but you're benefiting so many students. The best levels of teaching go on in inclusion classrooms. Teachers have to stretch, they have to learn more, they have to become more creative and everybody benefits.
Cevan:
So once again, the inclusion is actually benefiting the typically developing children who are in the general education setting.
Emily Mondschein:
Correct. Neurotypically developing peers benefit greatly from inclusion.
[Audio clip of voices of kindergarteners on playground fades in]
Cevan:
Thanks for joining us. Be sure to check out our website, kinderpublic.com, for links and more information about our guests and the topic.
A full transcript of the conversation can be found on Kinderpublic’s podcast page. Captioned episodes of all of our interviews are also available on our Youtube channel, where we are @kinderpublic.
We are also on instagram, facebook, and twitter! We’d love to hear from you there.
Please share the episode, subscribe to the podcast, and leave us a rating and a review. This helps us make our message more visible and we really appreciate your support.
I’m Cevan Castle, and my guest has been Emily Mondschein, Executive Director of Gigi’s Playhouse, in Buffalo, New York, and a member of the National Down Syndrome Society’s inclusive education guidelines working group. Our conversation will continue in the next episode.
Please take extra care, we’ll meet you back here next week!
[Audio clip of playground fades out]
Referenced in this episode:
Gigi’s Playhouse, Buffalo New York
National Down Syndrome Society
Down Syndrome Education International
Disability History: Lip-Reading Training
Disability History: American Sign Language (ASL)
“Why Inclusion Matters,” Emily Mondschein for Undivided
US Department of Education International Resource Information System (IRIS)
Works Cited in this episode:
NDSS Guidelines for Inclusive Education (United States)
APPGDS Down syndrome: Good Practice Guidelines for Education (United Kingdom)