Characteristics of Fully Inclusive Schools: A Conversation with TASH Leaders ~ 1010

Tim Villegas
If you don’t know about TASH, are you even an inclusionist? Hold up. Some of you might be saying, Tim, what in the what is TASH? Okay, here is what you need to know. TASH is a disability rights organization that has been around since 1975 that advocates for human rights and inclusion for people with significant disabilities and support needs, those most vulnerable to segregation, abuse, neglect, and institutionalization. Is this speaking to you? If so, you are going to love this episode.

My name is Tim Villegas from the Maryland Coalition for Inclusive Education. And you are listening to Think Inclusive, a show where with every conversation, we try to build bridges between families, educators, and disability rights advocates to create a shared understanding of inclusive education and what inclusion looks like in the real world. You can learn more about who we are and what we do at MCIE.org.

For this episode, I speak with members of the Inclusive Education Community of Practice from TASH, Debbie Taub, Diane Ryndak, and Mary Fisher, about TASH’s position statement on the characteristics of fully inclusive schools.

Just a point of clarification: we recorded this interview earlier this year before the annual conference was held in Phoenix, the first weekend of December. I’m going to give my full recap and reflection of that TASH conference in my audio newsletter, The Weeklyish. Go to weeklyish.substack.com to subscribe and get it in your inbox when it drops next week.

Thank you so much for listening. And now my interview with Debbie Taub, Diane Ryndak, and Mary Fisher.

Debbie Taub
Hi, I’m Debbie Taub. I’m on the TASH board. And I also am a technical assistance provider for the TIES Center, which is a National Technical Assistance Center that works on building inclusive systems for students with the most significant cognitive disabilities.

Diane Ryndak
Hi, I’m Diane Ryndak. I’m at the University of North Carolina at Greensboro. I am co-chair of the TASH Inclusive Education Community of Practice, a former TASH board member. And I also am affiliated with the TIES National Technical Assistance Center on Inclusive Practices and Policies.

Mary Fisher
And I am Mary Fisher. I’m at Lewis University in Romeoville, Illinois. And I am a co-director with Diane of the Inclusive Education Community of Practice. I’m involved in teacher preparation and have been a member of TASH since I was a master’s student in 1977.

Tim Villegas
Welcome all of you to the Think Inclusive Podcast. I’m so excited to have a conversation with the TASH Inclusive Education Community of Practice. Who would like to explain what the goal of the Community of Practice is?

Mary Fisher
She’s pointing to someone. She’s pointing to Mary.

Tim Villegas
[Laughing] Okay.

Mary Fisher
Well, our goal is that we’re one of the groups that are part of TASH, and our goal is to come together as a community across the country and think about critical pieces around inclusive education. We have separate subgroups within our community of practice, formerly a committee, in which we focus on policy, one group focuses on research, and another group is focusing on ways to market and let the world know more about what’s happening in terms of inclusive education.

Tim Villegas
So I heard three subgroups right there: policy, research, and storytelling or marketing, right?

Mary Fisher
Yeah, we sort of combined two groups—it was infographics and families.

Debbie Taub
It’s really about advocacy and understanding the lived experiences of families, advocates, and students, and how to help spread that knowledge and that word. So many people just don’t know the research around inclusive practices. There’s so much unconscious bias around people with intellectual disabilities and people with complex disability needs. It’s about getting to that layer to help open the door for inclusive education.

Tim Villegas
How large is the community of practice?

Diane Ryndak
It’s a hard question.

Mary Fisher
We have a significant mailing list—maybe 60 members. I feel that we have a core group of about 20 people who are generally with us, and then others join when they can.

Diane Ryndak
What’s really interesting is the whole group cuts across all these sets of people with different interests: advocates, parents, researchers, teacher preparation faculty members. It’s very broad.

Tim Villegas
So I’m hearing within the group you’ve focused on policy and on disseminating research.

Diane Ryndak
I would say that within the group we identified at least these three areas with people who were really focused in those areas. To be productive and to do as much as we could for TASH and the field, we thought it would help to have groups that met around specific tasks or focus areas.

For example, the research group is talking about not just how we disseminate research—because that’s what the journal Research and Practice for Persons with Severe Disabilities and the newer one, Inclusive Practices for teachers, already do. We’re really trying to focus on what research is needed. What is needed by the policy people? What is needed by administrators? What do we need in the field to push the agenda or to have data that supports inclusive education overall for all kids, especially for this population?

I would say the research group is still pretty new, but one of the first tasks the whole group did was to come up with the position statement with policy recommendations. That was the first task of this newly conceived community of practice. Once that was done, we broke into these three workgroups. In the research workgroup right now, we’re trying to figure out what research we need to move the field further and how we support that, either individually or as a group. Mary, does that capture it?

Mary Fisher
Yeah, I agree. It was all about moving forward and, as a group, thinking about ways to do that productively.

Debbie Taub
I want to throw a plug in there: join TASH, and you can join the Inclusive Education Community of Practice. We welcome everyone. One of the best things is that we’re getting perspectives from family members, advocates, teachers, administrators, and researchers. We’re really looking at what’s happening in the field and how we move it in the direction we need. So come join TASH.

Tim Villegas
Absolutely. Please join TASH. Please come to the conference. It’s going to be in Arizona next year, and it’s going to be in person.

Diane Ryndak
Right. That’s very exciting.

Tim Villegas
Debbie, you mentioned having all of these different perspectives. Are there any hopeful trends with inclusive education moving forward?

Debbie Taub
I think so. We’re seeing a real push to move from including one student at a time to looking systemically at how we shift the entire culture of the education system—at the school, district, state, and federal levels. Instead of “we have this one parent who’s working hard to get their kid included,” we’re asking, “what do we need to do to clear the field so that all kids can be included?”

That’s hopeful. Several states are putting finances behind this. California is really focusing on this. Washington is focusing on this and investing in it. Additionally, Maryland and Washington have stepped up and looked at their policies and practices. I’d say those are all positive. Mary, Diane—what else?

Diane Ryndak
That’s an important point. I’ll go back to the research workgroup a bit. We’re trying to think about how we get past the “one student at a time” to “one school at a time,” knowing that once the principal leaves, the school may go back to what it was doing before. We’ve got 35 years of history telling us that happens. So we have to break that cycle and look at systemic change, not just within a school or district, but at state policies and procedures and at federal policies and procedures. We’re still figuring out what is needed to impact the next generation of policies and procedures federally and at state levels. Mary, is that fair?

Mary Fisher
Yes. From the families and infographics group that combined, we have some people who have been parents for a long time and some new parents. People feel the frustration that we know a lot, and yet not enough people know that we know a lot. How do we share more and more stories, with facts to support us? How do we create a better understanding at all levels?

Debbie Taub
I’ve been on the researcher and teacher side for a long time, and the past 12 years I’ve been on the parent side. I have two kids who are on the spectrum. Shifting from being the special ed teacher at the IEP table to being the parent at the IEP table was a huge awakening to some of the barriers I thought we were done with.

I sat in my daughter’s IEP team and listened to them tell me: “I don’t really have time to push in to her class, so we’re going to have her come to my room for an hour to work on reading and writing.” I said, “You’ve just told me this second grader has scored at a high school level for reading. Why would I put her in your reading class?” The response: “That’s when we have time, and that’s when we work on reading and writing together.”

As a parent, there was a moment when I thought, maybe that is what’s best. Maybe that’s what I’m supposed to do. These are educators; they have my child’s best interest at heart. But as a researcher and teacher educator, I thought: they just don’t have the right information. That’s a hard position to be in. I’m lucky—I have years of experience and people I can call in the field. I called Diane, I called Louise Jackson. “This is what they’re telling me about my kid. Tell me I’m right.” They said yes, absolutely. Still, sitting in that IEP meeting is unnerving and hard.

Parents want what’s best for their kids, but they’re dealing with buses, sick kids, doctor’s appointments, homework, activities. They don’t have time to be the researchers, but they’re put in that position. If we as a community of practice can put information out there in easier-to-digest, easy-to-access ways, it’s better for them, for students, and for the system. That perspective shift has been eye-opening, important, and a little disheartening.

Tim Villegas
A lot of people will find that relatable. I often get emails or messages saying: “I know the right thing to do. I’m a teacher. They want to do this for my child, and I know it’s wrong. I need someone to tell me I’m right.”

Debbie Taub
In our spare time, we could work on a list of commonly heard statements during IEP meetings and the research, Dear Colleague letters, or other resources to address those. Another issue I had: a teacher told me I couldn’t visit the special ed classroom they wanted to place my daughter in because it was a FERPA violation. I said, “Let me call you right back,” and immediately went online. There’s a Dear Colleague letter that says that is not true. In the moment, I wouldn’t have trusted myself to say, “That’s incorrect.”

Diane Ryndak
I want to echo getting information to parents and helping them feel comfortable. I just got off a cold call from a district. A new person who left the classroom and is now in the district’s special ed department reached her own conclusion that we need to include these students in general education classes. She’s trying to figure out what resources she can use to help convince teachers, parents, and the director of special education.

I’m going through the TIES website and thinking about research we have, and talking with her about the different types of special education teachers in self-contained settings. What does each type of teacher need to help them question what they’re doing and be okay with that, but come back to what’s important for the student? It made me think about user-friendly, accessible resources. I’m not certain we have that yet in a very user-friendly way, whether for parents or systems that want to change.

Debbie Taub
The TASH policy statement on policy recommendations for inclusive education was our first step in pulling together what we know has to happen. From there, TASH as an organization can use it to advocate and identify coalitions that align with those goals. As a community of practice, we can take some of that information and ask: how do we build resources? How do we support that work for teachers, administrators, and families?

Also, what does it mean to be in a reciprocal social relationship? It means you have friends and they aren’t just there to help you; you’re seen as a true member of that community, and everybody sees you as adding something—not as an exercise in empathy. Nobody wants to be the object of pity in their social relationships. How do we build truly balanced relationships?

Tim Villegas
When you look at the policy statement, what are some key points for families and educators to focus on? It’s a big statement. If a family member or educator is just getting their feet wet, where would you point them?

Debbie Taub
For someone getting started, I’d begin with presuming competence and having high expectations. What does that look like? Look at resources that show the difference between “we expect all kids to learn” and “this student will be part of the community after graduation.” That’s the goal.

Know what’s out there—Think College, internships, job training, and other opportunities. I start there because you need the vision before you get down to the work. Mary and Diane may have different answers.

Mary Fisher
I like starting with people who have exited fully inclusive programs—their advice on where to begin. In the statement, “high expectations” comes first under characteristics of a fully inclusive school. If I moved into a district that seemed not inclusive or welcoming as a teacher, I’d look at that first list of characteristics and choose one area where my district might make some movement.

Maybe I’d focus on what high expectations mean and how my administrative team can help others see what that looks like. That might mean visiting another district or meeting via Zoom with teachers who approach instruction differently, thinking about what a classroom learning community looks like when it includes all students. The bullets give people ideas, but you don’t have to do everything at once. You can begin with one or two.

Diane Ryndak
I agree with Debbie and Mary. I like starting with the end in mind. Why do we provide education for any student? What’s the purpose of education for individuals who have extensive support needs? If we want adults with disabilities to be in society with adults who don’t have disabilities, how do we get there?

Look at outcomes for this population—segregated settings versus inclusive settings—and think about what we really want that to look like. Then back up: if we’re going to do that, we need A through F. We need to presume competence; we need students to be valued, contributing members of society. For a kindergartner, the “society” is kindergarten; for a fifth grader, it’s fifth grade, their family, and what’s outside school.

How can we take students with extensive support needs, teach them to function someplace else, and then insert them back into the society we want them to be in to begin with? We know that doesn’t work; it isn’t logical. The data says it doesn’t work. If we want kids to be engaged with kids, they’ve got to be with kids. So I’d start with the statement of purpose at the beginning—set the vision of what educational services should look like from early intervention through age 21. Then consider what services need to look like in a school, and what we need to do to help a school or system change to be more effective in preparing students.

Debbie Taub
To piggyback on that, many people struggle to think beyond a narrow view of what it means to be a member of society. I was introduced to disability studies through outdoor sports and adaptive recreation. The first time I saw amputees skiing, people with complex bodies skydiving, rock climbing, or people with intellectual disabilities whitewater rafting—those moments made me realize I’d been thinking too narrowly.

Being a functioning member of society isn’t “do this, this, and this.” It’s “what can I contribute, and what supports need to be in place for me to contribute?” One thing I love about the TIES Center is the universal design perspective: the barriers are not within the student or teacher; the barriers are in the system, environment, and materials. How do we shift those things to make access possible?

People sometimes push back: “They’re never going to get a job.” First, you don’t know that. Second, what does a job look like? It might not be a 9–5 office job. Many of us don’t have that, and post-COVID many people are happy about flexibility. Rethinking expectations is part of this.

Tim Villegas
A couple of things I noticed in the statement—especially in the fully inclusive statement—and I’ll reflect those and get your reaction. Number one: the explicit teaching of a communication system. I’m not used to seeing that. When you included that, was it very intentional?

Diane Ryndak
Absolutely. Correct me on the exact numbers, but research shows roughly 65% of the students we’re talking about don’t even have a communication system. How can you figure out what they know, what they don’t know, what they like, or what they want to say if they don’t have a communication system?

Without a way to communicate wants and needs and content, how can you be in any context and not want to talk about what’s going on around you, or add something to a conversation? You can’t if you don’t have a communication system. Explicit teaching of a communication system is critical to success in anything.

Mary Fisher
When we think about presuming competence—what does it look like? It looks like everybody has a way to communicate within the group, because we presume everyone has something to say and that each person has a voice. Too many students have a communication goal and even technology mentioned in an IEP, but it isn’t implemented throughout the day. They might have a device or way of augmenting communication for part of the day but not all of it. We want to ensure that’s emphasized and implemented across the school day.

Debbie Taub
The data shows that if you enter school without a robust communication system, you’re likely to leave school without one—even though nearly 100% of the data shows that if you explicitly teach a communication system, people will make progress. Clearly, we’re not doing something right in how we teach communication, and we need to address that specifically.

We also need to get beyond what Michael McSheehan calls the “nasty nine”—those typical communication options on AAC like eat, bathroom, more, no, yes, help, drink, food (and one more). Imagine if that’s all you could communicate. I would check out and stop paying attention because unless I want to eat, go to the bathroom, or get a drink, who cares?

Tim Villegas
Are you talking about core words?

Debbie Taub
No, those are different from core words.

Tim Villegas
Could you make that distinction?

Debbie Taub
Core words are the most common words used in English—the meaningful ones, not “the” and “a.” The nasty nine are very limited needs-based options we think people communicate. They’re extremely limiting. Core words are very different.

Diane Ryndak
With only those few options, there’s no way to control your environment. Everything is done around you or to you, except for those few words. There’s no way to participate or control anything in your life without robust communication.

Debbie Taub
If you want to learn more about core words, Karen Erickson’s Project Core is a great place to start. Also, Practical AAC is very user-friendly and family-friendly. Anyone with no AAC experience can get clean, easy-to-use strategies they can implement that day.

Tim Villegas
The other thing I noticed: I don’t see a really strong statement about placement. We say access for all students, access to accommodations to access the general education curriculum, instruction, assessment, and accountability systems, but I’m not seeing placement. I’m coming from the perspective that you have to be physically present in a general education classroom with students to be included.

Diane Ryndak
Maybe it’s not strong enough there. When I read “access for all students to campuses, classrooms, activities, and routines,” perhaps we should say general education campuses, classrooms, activities, and routines. And when we say access to accommodations to access the general curriculum and instruction, general education instruction only happens in general education. We might need to clarify. If it’s not clear, it needs to be crystal clear: if students aren’t there, they can’t be included.

Tim Villegas
One reason I say this: I was a segregated self-contained teacher every year I was a classroom teacher—13 years—and three years a district support specialist (2004–2020) in California and Georgia. Neither district was inclusive. My credentials were in “moderate to severe” in California; in Georgia it was adapted curriculum. If I wanted to teach students with extensive support needs, there was nowhere else to go.

As a self-contained teacher, I could look at this list and say, “I have high expectations for all my students; I use general education standards; I give my students access to the campus and classrooms because I’m actively pushing students into general education; I collaborate with general education teachers.” I could do all of this on the list.

But for real change, we have to be moving students systemically over time. That was a mistake I made. A fair criticism of me has been that I was too soft on special education teachers, thinking both things could happen at once. I just didn’t fully understand. Now, whenever I’m talking about fully inclusive schools, I make placement a big deal because it’s important.

Debbie Taub
You’re absolutely right. Research coming out recently underlines that context matters—and context is general education classrooms for 80% or more of the time and neighborhood schools. That’s key. We appreciate you pointing that out because we don’t want to send the message that “inclusion” is having a couple of general ed kids come to a special ed classroom for five minutes a week. That’s not where we are.

Mary Fisher
My preparation was similar to yours, Tim. It wasn’t until I got hired as a first-grade teacher that I got to be the person who pulled students in. We live in these parallel systems and parallel teacher preparation. It’s problematic from the start. Maybe part of our statement should be that the first teacher of all students is the general education teacher, and we are all support people to that teacher.

Tim Villegas
I like that a lot.

Diane Ryndak
I also want to give a plug for something that should be available by the time this is posted. The TIES Center has been working on a set of RISE tools for systems—state, district, and school levels—to engage in a self-reflective process about features of inclusive education for students with significant cognitive disabilities within fully inclusive systems. It is based on neighborhood schools and general education settings and is very clear about that.

It’s all research-based and data-based. The intent is for it to be used as a self-reflection tool for conversations: to get people to agree on what we mean by inclusive education for these students, what it looks like, the extent to which we’re doing it, and then to figure out what we need to do better with whichever component we want to address—or all components. Then action plan from that. By the time this is posted, it should be on the TIES website. Look for RISE.

Tim Villegas
This has been a fascinating, fantastic conversation with Debbie Taub, Diane—

Diane Ryndak
Ryndak.

Tim Villegas
—Mary Fisher. Thank you so much for being on the Think Inclusive Podcast. We appreciate your time.

Diane Ryndak
Our pleasure, our honor.

Tim Villegas
Think Inclusive is written, edited, and sound designed by Tim Villegas, and is a production of MCIE. Original music by Miles Kredich.

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For more information about inclusive education or to learn how MCIE can partner with you in your school or district, visit MCIE.org. We will be back in a couple of weeks. Thanks for your time and attention. And remember, inclusion always works.