Why "All Means All" Has Never Included "Them"- Dr. Cheryl Jorgenson

8:02PM Mar 19, 2023

Speakers:

Savitha Sundar

Dr. Jorgenson

Keywords:

students

ots

people

education

support

segregated

least restrictive environment

inclusive education

services

classroom

assistive technology

general

inclusion

disabilities

kids

placement

school

skills

disability

environment

Today I'm speaking with one of the most sought after Special Education celebrity speaker and author Dr. Cheryl Jorgensen. She has been extremely generous with her time to be here with us. Dr. Jorgenson has taught me so much through her work on inclusion of children with complex support needs. I have devoured her book called, it's more than just being in from cover to cover. Dr. Jorgenson, his bio is 37 years long and I have included it in my show notes. She has contributed extensively in all those years, to inclusive education for three to 21 year old students with significant disabilities as a researcher, policy analyst, professional development and technical assistance provider, university faculty member and founder of the Center for Inclusive Education at the Institute on Disability at the University of New Hampshire. She has served on advisory panels for the US Department of Education Office of Special Ed programs, and was the principal investigator for grants over $14 million. She has contributed much, much more, I feel humbled to share her with you all in today's episode.

Welcome to inclusive occupations, sharing stories of not just being invited to the party, but dancing. I'm your host Savitha Sundar, I'm a school based occupational therapist. This podcast is a space for OTs and others who work with children and youth and education to be informed, inspired, and empowered to create an inclusive community for the students they serve. Welcome, Dr. Jorgenson to our podcast, I am beyond honored to have you on the show. So I would like to start our podcast with a favorite quote of yours. Something that has been the guiding light in your journey in education.

This was a fun one to think about. I think the first one is all means all. Offense oftentimes throughout my career, I've gone to schools and you walk in and there's the school mission statement on the wall. And it will say things like all children this all children that. But then when you really look at what's going on in the school, what they really mean is all but these students with whatever. So that's one that has really guided me. And the second one is quotation. And I guess there's some uncertainty about the origin of this quotation I attributed to Anna East Ninh. And she said, we don't see things as they are, we see things as we are. And it means you know, our preconceived notions and our experiences can dramatically influence or alter the way that we see the world. So when I work with schools around inclusive education, school reform, I'm always really interested to find out for each individual person, like what have been your experiences with disability or people with disabilities? And how have those experiences kind of influenced how you look at children with disabilities today?

That makes a lot of sense. We see things as we are. Yeah. That is so accurate. I mean, like, I think, yeah, I think that probably has been an influence behind a lot of school policies and so many ways. We've been doing things in education for the longest time, so

yeah, exactly.

So students with extensive support needs have historically been in separate classrooms. So seven placements, and a recent study by Brock 2008 study shows that the numbers have been stagnant in the past 10 years, when it comes to the inclusive placement of this particular group of students. Students, this one to 2% of students and like you said, All means a whole has never included this group of students and why is their situation so on? changed, in your opinion?

Oh, as you would imagine, there are lots of reasons. And these students are, I think, as a group, a group of students who are taking a state's alternate assessment, which is designed, as you said, for about that 1% of students who have the most significant cognitive disabilities. And I think the percentage is somewhere around 16% of students with the label of intellectual disability, spend 80% or more of their time in general education. And that's kind of an average across all the states in the United States. Some states do better Vermont, Iowa, Alabama, but some states do much worse. And, I mean, some of the reasons that that I've been thinking about, and these are in no particular order, but the first one is really prejudice. And prejudice defined as kind of a preconceived opinion about a group of people that's really not based on reason, or actual experience. And just a couple of examples about how that that plays out in schools, I don't know if you ever heard someone say, Well, this child with Down syndrome really should be with others of her same kind. As if there's a, you know, some broad definition of people with Down syndrome than every single person, it's yours, too. And that's really a kind of prejudice, it's like, you know, you've had maybe one experience with a child or an adult with a disability, and then you generalize that experience to all people in who happened to have that same, that same attribute. And I mean, you know, it's, it's similar to racial prejudice, you know, you meet one person of Asian descent, who is really good at math. And therefore, you say, oh, all these students of Asian descent are really good at math, I mean, that's kind of one side of the coin has kind of a positive prejudice, but it can also really be negative, or you meet one person with a disability who has really difficult time reading, and therefore you assume all people with a label of whatever, are going to have difficulty. And I think, maybe even a little bit more underlying that prejudice, is looking at people with disabilities as less than lesser humanity, and people with without disabilities. And so those kinds of prejudices, really get infiltrated into our educational system into our decisions about placement, or decisions about how we envision the future for for the children that we have now. And certainly, you can jump in with any any comments that you have about that.

That is That is so true. And I feel like a lot of these students never had the opportunity to ever be in a gen ed classroom and feel given supports dropped into a special classroom, they started off being in a separate classroom, and never had a chance to prove otherwise. So and then you can, you know, always argue that they're not going to do well in a gen ed setting, because you've never given them that opportunity from day one. And nor have we made those changes in a classroom to make it welcoming and acceptable, and a flourishing, thriving learning environment for students of all abilities. So, um, yeah, I totally agree with you. It is such a deeply ingrained mindset that we have as a society, and it's,

you know, our laws around making placement decisions. Say use terms like, you know, did the team consider the general ed classroom with support? And so I've been in IEP meetings where that's literally just a checkbox So they considered it but they didn't even really talk about it or they didn't try it. So the starting assumption is separate, rather than the starting assumption being, in general Ledwith supports. I think another factor that accounts for sort of this persistence of, you know, segregated placements is simply habits. You know, we've always done it this way. We have, well, we've had this class for kids with Down syndrome for 20 years, or we've had, you know, we started this autism class five years ago. And that's where all our kids go.

And I'm so good at teaching kids on the spectrum, that I won't let go of them!

Oh, absolutely. Lovely. Teachers identities wrapped up in these kind of habitual practice that if I don't do that, well, what am I going to do? You know,

right. Yeah, yeah, yeah, it's more of like, keeping that industry running, benefiting the kids.

I mean, I think one of the reasons that that happens, is even OTs, that are your whole profession is supposed to be a functional participation in life. profession, but people are still really wedded to that developmental model. So before I actually learned to write a paper, you know, we have to start with pincer grasp. And then after pincer grasp, we have to practice holding the pencil for a few years. And it the developmental model just doesn't work for many, many people with disabilities, because they'll never progress fast. You know, that they are up to the writing point, you know, and this is I know, this is very difficult for OTS to hear is why bother Spencer's spending so much time on in writing, when we could go right to keyboarding? And the student or voice to text and the student could be producing that piece of writing? Right now today, right? That's the ultimate functional purpose.

Because that's what we've been experts in doing right? No? Oh, no. Oh, gosh, sadly. So yeah.

And then when you add on top of that, not only do I want you to change the goal for the student, I want you to come out of your therapy room and start working, you know, in a class of 30 students, I do have some empathy for, for how challenging.

It is definitely is

another reason and I think this one is really predominant. Why why students with more significant disabilities continue to be segregated, is people conflate the intensity of supports with segregated placements, you could only get this, you know, these supports, if you are in a separate classroom, people have never considered that those supports might be brought to the more natural inclusive environment, and even schools that are starting to include students. So you know, maybe students are spending a couple of periods in general education, but are still getting some pull out, well, that puts their service providers in a real bind. And it sets up a system that still put so many resources into the segregated environment than those resources that the time for the special ed teacher, the time for the OT your speech, to go into the general environment is not there, or it's not there adequately. And then we say inclusion didn't work. Right. Exclusion didn't work. So

yeah, I'm so glad you brought that up, because our services, the purpose of our service is that they benefit from their education in the least restrictive environment, and then we'll go on to talking about least restrictive environment, which is not, which is another topic altogether. And everybody has their own understanding of what least restrictive environment is. And sometimes we think providing services in a segregated classroom is the least providing services in the least restrictive environment, but we could end enable that kid to move into lesser restrictive environments slowly, right? That's a bit of our new

thing I've always loved about occupational therapy. And I know that you know this and your listeners probably do is when you look for kind of guidelines for practice and best practices, service delivery models, ao ta really focuses and it says, you know, the time has passed, where the benefit is from that one on one outside of the environment service. And let's let's all of us, our students, and ourselves, go into that mainstream environment. So I don't know how much education people get about, you know, really what your national practice guidelines say.

Yeah, especially for this population who are educated in self contained classrooms predominantly, like you said, 16% are in spend 80% of their time in Gen. Ed. So yeah, for the others that at all, they get services, they are going to get it in their special education classes. Right?

That's right. Yeah, just three more that I'll mention, that are these barriers, is lack of presuming competence. So if we make this generalization that students with a label of intellectual disability, can't learn, even part of the general ed curriculum, then of course, everyone's going to think that life skills are the most important thing. I think most of our teachers, even our special ed teachers, and unfortunately, some related service providers just don't have the knowledge in assistive technology, how to modify the general ed curriculum, how to design instruction, using the principles of universal design. And I think that would be such a wonderful area for OTS to, you know, to build their expertise in, because then they lend that to the that expertise to the team. And then finally, I have to put some responsibility on the United States Department of Education. Because in their monitoring and supervision role, they don't come down in a very forceful way on states that have for years, had LRE de data like in the in the single percent. So Hawaii 6% of their students with more significant disabilities have spent, you know, their time in segregated placements for years and years and years. And the US doe doesn't say, Come on, guys, you got to do better than that. So,

yeah, that was actually going to be my next question where, you know, the study by Kurth in 2019 found that supplementary aids and services were not considered and placement decisions. Other factors are considered student deficits, curricular considerations, environmental demands, and etc. Can you help us understand more about supplemental aids and services and and how they can? You know, we kind of touch base on that a little bit, I think, but how do supplemental aids and services help in the placement in the least restrictive environment, which is the general education classroom?

Ideally, it is? Yeah. I mean, you know, part of the problem is that schools say that the least restrictive environment is that segregated classroom, precisely because they have not tried out. The the broad variety of supplementary aids and services, supplementary aids and services can be people. So it could be, you know, that service delivery pushed in by special ed or related services, could be a parent educator. It could be adapting the environment. So looking at issues like seating, or the placement of the student's desk. It could be things like, adapting the instructional materials to

pardon me for the BPOS Oh,

absolutely. So other people's fears, and that I rarely see people looking at peers as supplementary aids and services. Again, adapting materials making the reading level or the listening comprehension Some level more in line with a student's turn abilities. So their difficulties in reading don't necessarily have to prevent them from learning that general ed content, use of assistive technology for, you know, as we started to talk about for producing text, assistive technology for doing art, assistive technology for participating in physical education class. So, I'd like to share a resource with your listeners. And it is a supplementary aids and services toolkit that has been developed by the Pennsylvania Department of Education. And I don't know if you can put this in the chat or somewhere on your website. But the organization where people can get it from is called pattern. And that's P, a TT ta en, I think it's Pennsylvania technology, assistive technology, network or something. But patent has developed a toolkit that really, you know, it really walks the talk of considering supplementary aids and services. And it it's a nice tool for an IEP team to sit down with, even before you start, you know, the IEP meeting process, so that people come to the table already having seriously considered what FA F that might benefit the student.

Thank you. So my dad is going to be such a useful resource for our listeners to take to their schools. Sure. Yeah. So I think so what is your opinion? Do you think in your experience related service providers expertise is considered in placement decisions?

virtually never. I mean, I've never heard someone say, in an IEP meeting, gosh, we have this wonderful ot on our team, who is also has expertise in assistive technology and curricular adaptations. Let's use her expertise to help keep the students in the general class. I've just never heard that come up. And I'm not sure many OTS feel like they can toot their own horn, you know, for raise their hand saying, you know, listen, I really have something to bring to the table here. And I think that I, you know, so No, unfortunately, not

that dissent, essentially a big part of our, our job. So I know, sad.

I know. For many years, I worked in a school with a student who had complex support needs, and one of the people on his team was occupational therapy, an occupational therapist, but she also had a doctorate in literacy, and lots of experience in assistive technology. That woman really was the team leader. The student was fully included in general education. Her service delivery was 99% of the time in the gen ed environment. She was the one who said, you know, here are some ways we can provide supports to the student in all his his areas of challenge, fine motor, sensory regulation, literacy, use of assistive technology, peer relationships, so she was just, you know, I always wished I could clone her because she was the inclusive Ed leader on that team.

I would love to have her on my podcast.

Okay, I'll tell you her name. Okay. Her name is Dr. Gretchen, G R e t, c h e n. Hamza. H, A N, S, E R.

Okay, so I'm going to be emailing today. Good.

Not the only one. I know, lots of SOPs and OTs who also have been really instrumental in supporting kids inclusion.

Yeah. And like you mentioned, they're like islands of excellence,

unfortunately. All over the place.

Yeah. Yeah. So since this podcast has a special focus on addressing related service providers, especially school based OTs, we are a really small percentage in in the school staff. Right. And I feel in my opinion, I feel we are inherently one of the most well qualified I'd like to facilitate inclusion because we have been trained and that holistic approach. And, and but we are sort of a sought out mostly to address these siloed areas, right. And I know like you said, OTs are doing much more in reality, we don't hear about them, the systems kind of allow very little room for us to go beyond and practice to our fullest scope. So OTS define occupations as things we need to do want to do and are required to do that occupy our time and bring us meaning and purpose. For students with complex access needs or extensive support needs. Life Skills, classrooms, or life skills curriculum is often recommended. And OTS are called to provide individual services to address skills for living. Is this meaningful and purposeful for our students?

Well, I don't have anything inherently against any students learning life skills. But I think that life skills for students with the most significant disabilities have been very narrowly defined to you know, and I know you know, this list, making your bed, choosing your clothes, setting the, you know, putting the silverware on the table. And it seems to me that those life skills are the things that we do, just to get us ready to go out and you know, participate in our real life. Like you don't spend all day setting the table or washing your clothes. So why is there an inordinate focus, instructional focus and time focus on those skills, when really what people spend most of their time doing out in the world is communicating with other people, or, you know, doing a job participating in leisure and recreational activities. So I think the rather narrow focus on life skills is really limiting. For for any student,

and I have to be honest, and say that, in my past life, I have focused a lot on those skills. They were so concrete, and it seemed better than handwriting many times, but still is so limiting in I mean, I guess, in the situations that I worked in, you know, in a whole program that was only kids with extensive support needs. It felt like the most meaningful thing I could be teaching, but then again, you know, that's from lack of my own knowledge and experience. And now that I know better, I hope to do better. For sure, so.

So the other thing in those situations, the students environment was the segregated classroom, maybe except for lunch and recess. So you you didn't see as part of your purview, helping students to perform science experiments or helping them develop real literacy skills. So I think you were doing sort of the best that you could in the environment that you and the child were in. And it's only when we broaden that idea of, you know, where do we see students with disabilities when they get to be adults? If we see them walking the mall and living in a group home or going to a sheltered workshop, then maybe repetitive practice on sorting? Makes sense. But if we see them being part of the regular world, the inclusive world, then there's a whole other set of skills that I think OTS would see as important to teach.

Absolutely, totally. Yeah. So the latest, you, you know about the Every Student Succeeds Act, and it talks about a role for specialized instructional support personnel and OTs would come under that and it's more of a general education, law that helps, you know, helps with academic and social emotional success for students. Now, this kind of legally gives us the go ahead to support students and school communities in general, rather than just under the IEP umbrella as related service providers. We're kind of going outside of that and supporting the school. Do you know any school districts that are utilizing specialized utilizing OTs and and speech therapists and others as specialized instructional support persoanl and using them as inclusion specialists?

Well, I think they're doing the first part, and not so much the last. The first is yes, using them best specialized instructional providers, but in the segregated environment. And one of the big barriers to moving kids and OTs or speech pathologist out of that segregated environment is the caseload issue. Like, if you've got 60 students on your caseload OT and you can serve five or six or seven of them in one hour in a segregated classroom, that's just going to make much more practical sense to you than if you have to go from, you know, inclusive classroom to inclusive classroom to see all of those kids. So yes, I think they're being used as specialized instructional personnel, but probably not so much as inclusion facilitators. And as you say, it's it's really not taking the best advantage of the skills that those related service providers, hopefully have. I don't know have Has anyone done a research study on the initial undergrad or graduate preparation programs of OTs, to see how much time is really spent on teaching OTS to facilitate students participation in general education? Is it part of your national standards? does it translate into your professional preparation?

I can tell you that it's probably no because 25% of OTS work in the school system, almost 25% work in school systems, right? Education is more under pediatrics and school based practice. Sure, good. If you're you may hear about IEP and stuff like that under pediatrics, but it's so minimal that they learn about school based practice very much in the job, unless they end up taking like an elective on school based practice, which are in 2001. Or if they just go out of their way and educate themselves adequately to get into the schools. We don't have that education in our program. So we pretty much alone in the job, and the job tells us you do this.

Sure, exactly. And it's the job most of the time is kids in segregated classrooms. That's where you go. Yeah, yeah.

Yeah, kind of the general kind of an interest survey on Facebook and asked people, what percentage of your caseload would you say involves students with extensive support needs. And 50% of OTS said that at least 50% of their case, involves students with extensive support needs. But yet we talk so little about that population, you know, you talk under the umbrella of disabilities, be like this population has kind of been lost. Do you think talking less about this population perpetuates the segregation?

Of course, you know, if that group of students is still kind of invisible, if you as an OT go to an OT conference, and there's only one session that talks about students with those needs. Unfortunately, you're not going to build your expertise, even though 50% of your kids in your caseload might have those needs. So it's kind of a vicious circle, isn't it? Yeah. And I think, and you can help to educate me here. Do Different states have different requirements for ongoing professional education for related service providers? Or is it your national organization that says, you know, every three years you have to have 60 hours of in service education?

No, every state has a requirement. Okay. And very few states. I don't know if they even do, they don't have requirements where your practice area and your continuing education units have to match got it. Right. You can take a course on working with people with adults with stroke and still meet your licensure requirement. You don't have to have training, education for you in your you know, your licensure.

School Principals out have a real leadership role. I mean, they, they certainly have more control over what their classroom teachers do to meet their professional development and ongoing certification or licensure requirements. But there's no reason they can't go to their OTs and speech paths and PTs and say, Hey, guys, you know, your most of your caseload or half of your caseload is kids with more significant disabilities, I would encourage you, you know, to get some ongoing professional development, or, you know, I will make sure that you are invited to our workshops when we talk about assistive technology for handwriting or whatever.

Yeah, and in my experience, oftentimes OTS have kind of shied away from being in teachers trainings, we want to have our own training, of course, right. Our silo training and our training, we talk about sensory and fine motor and those kinds of things. We don't educate ourselves about the educational system, separate skill sets can meaningfully be used within that. It's more like we dictate services to meet our expertise than our expertise meeting the needs of the education system. So

I mean, I wonder how many OTS are have actually looked at a particular grade levels, learning standards, as defined by the state, and said to themselves, gee, where could I jump in here to work to help the student meet those standards, or even to meet the alternate assessment standards, which should be strongly aligned with the general standards? So you're right, lots of lots of room for professional growth?

For sure, yeah, since we don't see ourselves as that. I know, educate ourselves that way. But I hope that will change very soon. And, and so that's what my PhD is about to. Hopefully, I feel like a lot of OTS feel the need. And I also feel like, there are a lot of people doing amazing things around the country, but we just haven't heard from them. So

So have you addressed in a previous podcast? What inspired you? And your focus on inclusive education?

Yes, no, I haven't. Not really. So you are actually interviewing me here...

I think I think it would be good for our OTs to know, and I mean, I'm not really answering you, but answering the community here to say that it happened because in my situation I worked for like 1513 years in, in, in a program that exclusively serviced kids with extensive support needs in segregated settings. Many of our classrooms were were fenced off in the back of the school building. And there were moments when we would have kids with, you know, we knew that we had to have our kids in the least restrictive and they need to have needed to have inclusion time. We wouldn't do some, some teachers would do this mainstreaming, where we would bring kids to come in and do activities with students in the self contained classrooms. And that was just a moment of an aha moment for me to see like, oh, my gosh, are I'm just seeing this other side of my kiddos. I've missed so much and what I could in fact, my first episode talks about the story that what I had been working as a therapist for years, just self feeding didn't happen. But it happened in one session when a peer came and said, Oh, you have yogurt, I have yogurt to Let's eat and the kid just started feeding himself. So that was just my moment to see like, oh my gosh, this is such an important aspect. And of all the things I could be supporting my kids, if they can have these meaningful friendships and who said to be independent, we can be interdependent. You know, I don't even need to learn to button myself. But as long as I can ask a friend like please button my shirt for me. Exactly. Right. Everything else is secondary to having that community and that meaningful relationships with peers, and we have deprived our kids for the longest time. Yeah. So I kind of wanted to focus my energy into creating these friendships. And that evolved into like understanding more about inclusion and authentic inclusion. And it's not just those isolated moments for friendships, but just the whole day being with their peers and having the community in that relationship. So yeah,

that's great story. Yeah.

Well, I have some rapid fire questions. Okay. Dr. Jorgensen

and I Have some rapid fire answers.

Okay, here we go. Inclusion is

not only the invited to the party, but being invited to dance. Ah, you've probably heard that one. I love that one.

Okay, so, um, the next one is disability is,

disability is what we make it, you know, and that's how we construct it, that's going back to the, you know, original quote, it's very situational. It's very dependent upon the environment. And by environment, I mean, the built environment, as well as the attitudinal and instructional environment. So in a very universally defined environment that is built from the ground up to welcome and support students of varying abilities. Fewer students will be labeled as disabled, right?

Love it. Yeah. Yeah. A book you recommend?

Okay, this was an easy one. It's coming out in a month or so. And it's called, you're going to love this kid. And it's the third edition by an author named Paula Kluth. K L U th. And it's all about including students with labels of autism, in general education. It's a thick book. But man, if you wanted a Koran, a Bible, a, whatever your favorite, you know, guiding book is to teaching students with autism in an inclusive environment. That's the one.

I cannot wait to buy. I have read your book from cover to cover many times.

Thank you.

It's been my Bible for a long time, but I'm really excited. Okay, so what's the best part of your retirement?

Having more time to spend with my grandkids? Sure, I agree.

Oh, nice. Okay. And someone you look up to,

I have to say, Paula Kluth. She's so prolific, and is such a great presenter and a great writer. So if anyone, you know, she has a website, so if you wanted to start somewhere to learn about inclusive education, I would say, you know, seek her out.

Okay, I'm going to add her link to excellent. So it's your first job.

Well, it wasn't a paid job. But it was a volunteer job. I worked. When I was 13 years old, I worked in a summer Headstart program. And I think Headstart has always had a mandate to serve some percentage of students with disabilities. And I really remember meeting students with disabilities for the first time in that program and feeling kind of drawn to them. So that was my very first job.

A final takeaway for our listeners,

don't take away

I think it might be to put yourself in the shoes of a student with a disability. And try to experience the world from that student's viewpoint. And think about whether that student is kind of having his or her basic human needs being met. Do Do they have? You know, maybe it's Maslow's hierarchy? Do they have a strong? Do they feel safe? Do they have you know, love in their world? Do they have a sense of strong belonging, not belonging in one place, but belonging throughout the school belonging in their community? And the realization that the acquisition of skills comes after that sense of belonging? It's not my idea, but Norman Koontz once said that people have flip flopped, some of the levels of Maslow's hierarchy, and they've looked at skills as necessary to acquire before people can belong, I would say just as you did, that belonging is a basic human need, and it's only from that position. show of feeling welcomed feeling valued, of being asked to dance, that people will do their best job of acquiring skills.

I so love it. So love it. And it's such an essential thing for all of us to hear. It's not the bottom down bottom up approach. It's a top down approach. Great. Thank you so much.

Oh, you're welcome.

This was amazing.

Yeah, good luck. And I, you know, again, I look forward to talking with you again as you progress in your program.

Thanks