S4 Ep_037 The Impact of the Down Syndrome Inclusive Education Guidelines, with Emily Mondschein, GiGi’s Playhouse Buffalo, NY Pt.4
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 application and impact of an educational profile and creating a disability category for Down syndrome:
Some benefits of and motivations to use the Down Syndrome: Guidelines for Inclusive Education document;
How inclusion for children with Down syndrome can help with differentiation and learning achievement for all students;
The critical importance of using evidence-based, research-based information to form educational and life expectations for individuals with Down syndrome;
How the exclusion of disabled individuals from the earliest stages of education may be related to other instances of exclusion in our communities.
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.
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I think if you're somebody who's using these guidelines, you're somebody who cares about best practices, cares about people with disabilities, and so, you want to do what's right. So, you're using this as a guidance document to help your staff, too. You want to create cultures that are embracing of all people.”
-Emily Mondschein
Transcript
Season 4, Episode 37 (Pt. 4 of 4) The Impact of the Down Syndrome Inclusive Education Guidelines, with Emily Mondschein, GiGi’s Playhouse Buffalo NY
Emily Mondschein:
I think if you're somebody who's using these guidelines, you're somebody who cares about best practices, cares about people with disabilities, and so, you want to do what's right. So, you're using this as a guidance document to help your staff, too. You want to create cultures that are embracing of all people.
But currently what I see, <laugh> is people who care most, who are good administrators and educators, applying these guidelines.
And I don't think they feel like it's an “accountability”. They feel like it's doing what's best for kids.
[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 the conclusion of our interview with Emily Mondschein, focusing again on the inclusive education guidelines for learners with Down syndrome. The first part of our conversation specifically explaining these guidelines is the previous episode in this series, Episode 36. If you have not accessed that, you may wish to go back one week and review that information first, where she talks about the creation of the guidelines.
In this episode, Emily explains the benefits of inclusion for the entire community, and encourages the use of research-based knowledge and evidence-based educational approaches.
An important fact to keep in mind is that individuals with Down syndrome are often members of multiple disability communities, such as the DeafBlind community, and those disabilities must be recognized and supported accurately to allow full access to education. Even today, this is not happening consistently, and this failure deprives both disabled individuals and our broader communities of their full expression.
Emily is a leader in disability rights in the United States and the Executive Director of GiGi’s Playhouse in Buffalo, New York. She contributed to the Down syndrome inclusive education guidelines as a member of the working group for the National Down Syndrome Society in cooperation with Down Syndrome Education International. Emily has presented on the guidelines to the United States Congress, and provides implementation support and direction for districts, educators, and parents.
The guidelines being discussed in this episode 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.
We would like to ask for your help on this issue one more time- share this episode on social media, and 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:
If these guidelines are brought to state level education, or district level administration, does this enforce a kind of accountability in terms of learning standards and achievements?
Emily Mondschein:
I think that, you know, it holds them knowledgeable. I think if you're somebody who's using these guidelines, you're somebody who cares about best practices, cares about people with disabilities, and so, you want to do what's right. So, you're using this as a guidance document to help your staff, too. You want to create cultures that are embracing of all people.
So… now, if they have to use these guidelines? Yes. <laughing> That enforces accountability, right? Like, I mean, and how much do you have to do something? How much is the oversight? How much can it be enforced? I can’t, you know, it's hard to picture how that would happen, but….
Cevan:
So that's not the goal for right now. The goal for right now is the voluntary uptake of the information by people who want to do a really good job.
Emily Mondschein:
Well, I don't know. I feel like, you know, the goal would be that it was mandatory. I feel like the goal should be that it's mandatory.
Cevan:
Ok.
Emily Mondschein:
Why shouldn't you apply what we know about Down syndrome when you're working with a student with Down syndrome?
Cevan:
Mm-hmm.
Emily Mondschein:
But currently what I see, <laugh> is people who care most, who are good administrators and educators applying these guidelines.
Cevan:
Got it. <laughing>
Emily Mondschein:
And I don't think they feel like it's an accountability. They feel like it's doing what's best for kids, you know.
Cevan:
Mm-hmm. Yeah.
Emily Mondschein:
But I'd be thrilled if that was the norm, and that was what everyone had to do, because that’s what you should do.
And it's not the kind of thing where it's like I have to implement what's on page three and page five and page six… It's more like understanding the services that may be beneficial, understanding the therapies that may be beneficial, understanding the best behavior techniques, understanding the health pieces that impact education, you know?
Knowledge.
Cevan:
Right. Yeah, that makes sense. I want to ask one more question, if it's okay..
Emily Mondschein:
Yeah. Please.
Cevan:
On the inclusion within the classroom, and what that looks like: does the inclusion of a student who is not…
I mean, <laughing> to be very honest with you, in kindergarten, I don't see how it's not possible for kids with Down syndrome to follow the curriculum.
You know, understanding that everyone is different, and of course we're all facing specific challenges, and resources in the school setting, and these impact the outcome.
But, you know, this is not rocket science. <laughing> This is kindergarten. And so I don't see how this doesn't work.
But let's say that we have an individual in the early elementary setting, who has been placed in general education. If they are not achieving an understanding of the content at the same pace as the average peer, as the average of the peers in the classroom, does that hold back the entire classroom?
Emily Mondschein:
No. No, it should not.
The point should be that we're providing opportunities for the student who is - we’ll refer to this as Down syndrome- the student who has Down syndrome, we're providing them opportunities to be able to do what the rest of the students are doing.
So, for example, very common for people with Down syndrome not to be able to write at all, and the rest of the class might be writing, you know, paragraphs on what they think the theme and the main idea is of a story. So, there are pieces that go into this, you know? We want the individual with Down syndrome to have access to the story. So perhaps we are taking the book that everyone is reading and we are adapting it so that it is at a level that they can grasp, whether it's modified, whether the language is simplified, whether there's pictures, whether there's… the words are bigger, we're doing something so that they can access the same thing.
And then, you know, maybe we're using an assistive device for them or a computer for them to pick out three options for the theme. Maybe they point to the middle picture and that's the theme for them. And then they have to write one sentence as opposed to 20 sentences about it, or five sentences or a reduced amount of sentences about the theme than their peers are writing. And so maybe they're doing a lot of this- and technology is a huge friend to us. Maybe they're doing a lot of this by word to word pointing to words. They don't have to be able to spell right, blah, blah, blah, blah, blah, to get to the ending goal that all their peers are doing. And we have all of these little pieces in place to sort of get them over the finish line that everybody else has.
Cevan:
So they have the same- I'm sorry- they have the same content as the peers, but that doesn't impact the child sitting next to them from writing out the information the way that they were originally planned to do.
Emily Mondschein:
No. Absolutely not, no.
And sometimes that person sitting next to them as a peer model, it sort of strengthens their craft, because they can be a good friend and a good helper to the individual with Down syndrome, who maybe doesn't know how to turn the page, doesn't know to read from left to right. Those are these very simple things that our young ones with Down syndrome might struggle with. Their peers can be great examples if they just turn to the right and look at them and see what they're doing, so...
Cevan:
Mm-hmm.
Emily Mondschein:
But yeah, it doesn't mean that we're taking anything away from, it's not like the teacher has changed the whole lesson to make it fit for the student with Down syndrome.
It's just that we have a strong team in place, and this is not just the teacher, it's the special educator. It's the therapists involved on the team, everybody saying how this is the curriculum, this is what we're teaching.
How about this? Let's break it down even smaller. Who creates the lesson plans on this team? Is it the teacher? Okay, the teacher says, “In two weeks we're doing this for math, this for reading. Here's my lesson plans, team. I'm going to give it to the OT, the PT, the speech, I'm going to give it to the special education teacher. How should I present this material? How can you help me present this material to Johnny so that he can access it?“
Cevan:
Yeah.
Emily Mondschein:
OT says, “I've got special scissors.” Technology person says, “Let me find that story online,” you know, all of it. PT says, “We can throw a ball at the words.”
But this is a team that's working together and this is where it takes strategy, and it takes planning, and it takes caring, and it's just so much easier to just push it off.
We can do it, though. We can create really rich, engaging learning, but it's a team effort.
Cevan:
If your education guidelines are implemented voluntarily or otherwise…
Emily Mondschein:
Yeah. <laugh>
Cevan:
How would we know success? How would we know that they've been implemented enough? What is the first goal for implementation?
Emily Mondschein:
You know, I think we see a student who's progressing. I think we see these goals on their IEP and they're working towards their goals and they're meeting them or they're continuing to work on them. We are seeing small steps, small gains in that direction.
Behaviors, we're seeing reduced behaviors, we're seeing increased speech, we're seeing increased socialization.
We're seeing improvements overall in the development of the child. I think that's sort of what we'll see if we're using these guidelines, if we're putting forth these techniques, these strategies.
Cevan:
And from a state education perspective, how about the report card there? How would we know that this is being sufficiently implemented across… there's sufficient uptake across districts to make a difference.
Emily Mondschein:
In the student with Down syndrome?
Cevan:
From a state level, from that kind of bird's eye view, how would we know that enough places have started to implement this change?
Emily Mondschein:
I mean, you know, that's a good question. Would it require certain monitoring, certain checklists, by the team that need to be submitted to the administrator showing that they did X, Y, and Z on a monthly basis, you know?
That certain districts are put in red zones by the state because they have too high amounts of self-contained classrooms. So, you know, that's different than showing success in the classroom by a student with Down syndrome.
Cevan:
Yeah.
Emily Mondschein:
I think that when we say inclusion, that doesn't mean we can't work in small groups or one-on-one. It just means that we have to be intentional about how we do it. You know, like, it doesn't have to be that all the kids with the IEP go and leave the classroom at the same time, but maybe it's a group of five, who we found through assessment really struggled with a certain area, and so we took them into a smaller group and did a more intensive activity. I think we need to be intentional about it, not just…
And I think there's something to be said for 15 or 20 minutes of an individualized reading program for a student with Down syndrome based on the profile of how they learn, which is very different.
Cevan:
Is it fair to say that there is a snowballing effect on academic or work achievement outcomes when a full education- the academic track that typically developing children are on- is withheld from students with disabilities due to misinformation about the disability, low academic expectations, or is simply made unachievable for the individual due to the absence of a appropriate disability supports?
Emily Mondschein:
Yeah, absolutely!
I've always said, and I think a lot of parents, their goal is for their child to one day go to college, have a contributing job in society, have meaningful work, and if we are compromising at that, on the education, throughout their entire education, how can we expect that to be achieved once they leave?
I've heard a statistic, 17% of people with intellectual disabilities are included in the general education setting, and 17% of people with intellectual disabilities have jobs. And you know, it really makes sense. There's no special settings for shopping, there's no special settings for restaurants. There's no special settings for… we all live in the world together when we leave our cozy little self-contained classrooms, we're thrown out into, what? Nothing? Sitting on the couch? What are we doing after that? Are we going to college? I don't think so. I mean, I don't know what we're doing.
We really need to think of these end goals for these people. It can be detrimental to their futures.
Cevan:
Sort of an institutional living setting. That's what our goal is, right? Typically.
Emily Mondschein:
I mean, yeah. <disapproval>
Yeah. I was told when I was pregnant, by the nurse, that her friend has a high functioning child with Down syndrome and she gets to stuff straws on the line. She gets to put straws in the straw wrappers on the line. Nothing against doing that, but why would I consider that? That's absurd. Why would I want that for my child? I mean, if he was doing that and he was happy and that was the place he came to, fine. But why, when I'm pregnant, would that be a goal I would aspire to?
I don't know. <disapproval> It's just….
Cevan:
It's right. It shows you the level of expectations.
Emily Mondschein:
Yeah! It's a complete underestimating of them.
Cevan:
This is not just true about the disability community. This is true about so many communities who are marginalized before they're even given the ability to grow.
Emily Mondschein:
Yeah. The fact of the matter is if you're not exposed to it, if you're not entrenched in it or if it's not a part of your life, don't speak to it, because you don't know.
Recently, I went to a theater thing locally where people with and without disabilities do plays together, and I sat backstage with two individuals who had Down syndrome and I was just like, my gosh, if the world could see this conversation between the two of them, who were dating, and who were just talented actors memorizing their lines and making money.
And I was just like, this is phenomenal, and we have doctors telling me that my high functioning child might stuff straws one day. You've never been to this theater and seen these people that I'm sitting here with. You've never seen anything like this.
You have a memory of something from a very long time ago of somebody who didn't have medical care, didn't have proper education. That's what you are seeing and you're sharing that with me. And that's offensive.
Cevan:
It is offensive.
Preventing people from being literate, from being able to write their stories, speak their stories, share them, is one way of making sure that people can't ever tell you that you're wrong.
Emily Mondschein:
True. That's a very good point.
Cevan:
So I think I already know the answer to this next question, but would you expect to see greater public participation for the adult Down syndrome community- I should actually say from the youth community as well- from the successful implementation of your guidelines? And are there countries or communities where something similar has already been in effect where we can now see data regarding outcomes?
Emily Mondschein:
They have those Swift schools, which are… you have to look up Swift. They are completely inclusive. They have national guidelines for people with this, for all people to access education. So these are the folks who are really big into Universal Design for Learning, which I think schools should be utilizing this teaching strategy. I'm not an expert in it, so I can't speak extensively to it, but the Swift schools, this is what they use, and this provides access points for all learners within the classroom, across all subject areas. And they do have data around it that it has shown to be successful.
I can say, interestingly enough, a new research study came out recently that you'd probably be interested in. It was done in the United States, and it's the relationship between special education placement and high school outcomes. And it speaks to students, a large cohort of students with disabilities that were followed from 2013 to 2018, and they followed those that were included in the general education setting 80% of the day or more, as well as those who were in segregated settings.
And it showed the ones that were included outperformed- highly outperformed- their peers in the other setting in math and reading. It's a great new study because it really kind of speaks to what we're talking about here today, as well as, it showed higher outcomes and their diplomas that they were able to receive, and then also their employment opportunities.
So yeah, there's studies that <laugh> this is all based on research, and this is just the most recent one I've seen, but there's 25 years of research that shows the support of inclusive settings and how that benefits people in the workforce, in reading, in math, how they've outperformed their peers in the segregated settings.
You just Google it and find it. I mean, it's just out there. That's why the law was based on it, because it couldn't be ignored anymore.
Cevan:
Do your guidelines, and also just what we're talking about in terms of these new studies and the information that we have, and the advocacy of people with Down syndrome and their greater participation in public space, do they call for the use of a different model or understanding of disability in our society?
Emily Mondschein:
I think disability is an identity, and it's something to be proud of, and it's an aspect of diversity.
And I think they do call for us to sort of re-envision how we see disability. It's nothing for us to feel bad about or sorry for, it's not like people like you and I are some sort of saints. These are people! Who, like you and I, have the same rights, should have the same rights, should have the same access. And I do think that these guidelines, sadly, have to call on that because that's not the case.
And so yes, it would, I would hope, change how we see individuals with disabilities.
You know, we ask a lot of our kids in this nation. We ask them to not stare at people with disabilities, and we ask them to be more understanding, and we say that bullying is bad and all these things, yet we give them no exposure. They have no understanding. So there's these little people with underdeveloped brains, parents who also don't have exposure or understanding because they didn't have it, and we expect them to be embracing of all people, which yes, we should be, you know, but…If you don't understand something, it's hard to accept it.
And when that something looks and sounds different, you are afraid, you are skeptical, you are not going to say, let's be best buddies. You've got a couple steps of caution between you and that person. If that person's stimming or making a strange a noise that's strange to you or different to you, if that person looks different, maybe their tongue hangs out a little, you're going to sit there and be like, I want to be that person's friend. No, you're going to be uncomfortable unless you have that person with you every day of your life from the time you are five until the time you are 18.
Talk about systems changing. Talk about changing the way we view disability- it's exposure, it's everybody being together. It's normalizing, because it is, disability is the largest population that exists in our country, and we're all going to be disabled one day.
So do you want these kids to take care of you when you're disabled, who've had no exposure to disability? And, quite frankly, I'm probably afraid of it at times. It's a sad situation.
Cevan:
Exactly. And thank you for bringing up aging.
Emily Mondschein:
Yes, right?
Cevan:
Talk about intolerance coming to…
Emily Mondschein:
Oh, it's horrible.
Cevan:
Coming home to roost! Because…<laughing>
Emily Mondschein:
Oh, I know. It's coming for everybody. Some sooner than others, right?
Cevan:
Yeah, exactly.
Emily Mondschein:
My son has caused me to be much more accepting, it's just... sort of causes you to have more tolerance and understanding outside of your circle.
Cevan:
I absolutely think it's related. I absolutely do. If we can't tolerate it when we're kids, and we're not taught to accept that, because there's something wrong with it and it shouldn't be with us…
Emily Mondschein:
Right.
Cevan:
Then we're definitely not going to tolerate it as an end of life condition either.
Emily Mondschein:
No. It's a cycle.
Cevan:
Inclusion out of selfishness, if for no other reason, people! <laughing>
Emily Mondschein:
Right. <laughing> Do it for yourself!
Cevan:
Do it for yourself. <laughing>
Emily Mondschein:
So true.
Cevan:
Little guy.
Emily Mondschein:
Hey, you!
Galen:
Wow!
Emily Mondschein:
How are you?
Cevan:
He is like, please unlock your phone. So I'll do that.
Emily Mondschein:
How is school going for him? How are things going?
Cevan:
We are doing so well!
Emily Mondschein:
Yes.
Cevan:
We applied for the GiGi’s Virtual Literacy Tutoring.
Emily Mondschein:
Oh, excellent!
Cevan:
Yes, and it's amazing! We meet with a tutor every week in the virtual playhouse, and we've been working on phonics and reading, and it's going great, and he loves it.
Emily Mondschein:
That's wonderful.
Cevan:
He's got a farm program that he's going to once a week for a couple hours of farm chores and…
Emily Mondschein:
Wow.
Cevan:
Outdoor time with other kids, and so he's gaining a lot of independence there.
Emily Mondschein:
Wonderful.
Cevan:
It's actually taught by a special education teacher who wanted… who just personally believes kids should be outdoors, and she lives on a farm, so… <laughing>
Emily Mondschein:
That's amazing.
Cevan:
Yeah.
Emily Mondschein:
That’s amazing.
Cevan:
Yeah, I feel super lucky about that. And then, he's doing some swimming classes, and we're doing other programs through the week as we can, and…
Emily Mondschein:
That is wonderful. You've really found a way to sort of piece together a meaningful experience for him.
Cevan:
I just want to make sure that I ask you the most important question, which is, how can people follow you and support your very, very important work?
Emily Mondschein:
Oh, thank you.
I'm easy to find, I guess, relatively speaking. So I am, I'm the Executive Director for GiGi's Playhouse in Buffalo, New York. The work that I do through that lens is, yes, education related, absolutely.
But this work is more of something I've done in a different, slightly different venue. And I've started working with school districts, with this work, so if somebody was interested, either a district or a parent, I would say I can be reached through my email address, which I'm happy to give. It's E Mondschein, M-O-N-D-S-C-H-E-I-N (so, my last name) EMondschein@gigisplayhouse.org.
Cevan:
That's great. Thank you so much.
Emily Mondschein:
Yes, absolutely.
Cevan:
Thank you for all of your time and your brilliance and your hard work and dedication to this.
Emily Mondschein:
Well, thank you. Thank you for shining a light on it, and I really hope it helps you on a personal level and just so many of us who are going through the same thing. So I really hope it just continues to help people.
[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.
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
Unique Theatre Company, Buffalo, New York
SWIFT Schools, Equity in Education Paradigm Shift
GiGi’s Virtual Tutoring for Individuals with Down Syndrome - Math
GiGi’s Virtual Tutoring for Individuals with Down Syndrome - Literacy
Works Cited in this episode:
NDSS Guidelines for Inclusive Education (United States)
APPGDS Down syndrome: Good Practice Guidelines for Education (United Kingdom)