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January 12, 2022January 13, 2022

A Discussion of Instructional Apps with Zafer Elcik of Otsimo

The following is the written transcript of the audio recording of my interview of Zafer Elcik of Otsimo, which you can listen to in the podcast version of this post. This transcription was aided by Otter.

SPEAKERS

Anne Zachry, Zafer Elcik

Anne Zachry

Thank you so much for being in this podcast with me today. I really, truly appreciate you making the time, especially since we’re having to accommodate international time zones, and I’m here in the United States and you’re in Turkey. If you don’t mind, could you just go ahead and give us just a brief introduction of yourself and your product?

Zafer Elcik

Thank you for taking the time to talk with me. My name is Zafer. I am co-founder of Otsimo. At Otsimo, we are developing apps for kids with special needs, mostly for autism, Down Syndrome, and mental challenge. What we are trying to do is to provide early intensive education to the mobile devices and the speech therapy, as well. I have a brother with autism. He has been vulnerable for a long time. And I realized that he has special interest in smart devices one day, but I couldn’t find any suites or apps for my brother. The typical apps have a lot of advertisements, as well as, like, they have a lot of sounds, animations, and so on, and my brother actually liked to play with them, but he ended up with a bad situation. I decided to create app companies just helping kids on the spectrum. Well, right now we have kids all across the US, UK, as well as Turkey. We have already met the Minister of Education of Turkey. We reach education and speech therapy all across the world through the mobile device.

Anne Zachry

That is so cool. That’s such a powerful outcome to make happen. That’s such an accomplishment. That’s so cool.

Zafer Elcik

Thank you.

Anne Zachry

Oh, thank you. So well, one of the things that because we’re here in the United States, and we’re constantly advocating for kids with special needs to get the services they’re supposed to be getting and the supports that they need. And, very definitely, the whole issue of alternative communication methods and kids who have language impairments who can’t get their words out, but that doesn’t mean they don’t have words … I mean, I’ve worked for over 30 years with kids with every kind of disability you can imagine, and lots and lots of kids on the autism spectrum with language challenges, but also across all age groups. And, so one of the things I wanted to ask you about – because I did download and install your app and mess around with it, so I could become familiar with it – the graphics and the imagery, and the age ranges that look like on the app max out at like seven and older. And, for my kids on the spectrum who are middle school and high school age or young adult age, they don’t see themselves necessarily in the apps, and the tools that are are out there for children who are younger. And, the accommodations they need evolve over time as they get older, and they may still have the language skills of a very young child, but they are still a teenager on the inside. And, so, my question to you was, “Is there … are there plans to expand the app to have a version that is more grown up and more adult looking and more age appropriate for teens and young adults that will follow them into college?” Because I’m seeing kids who everybody thought they would never go to college. But once they get the help was like “Oh, hey! That’s a possibility for you, now …”

Zafer Elcik

Yeah.

Anne Zachry

… but these tools can’t follow them necessarily. And so my question to you is, “Are you looking to expand it to for to make the tool something that will support older users, especially as your kids get older … your child users?”

Zafer Elcik

Yeah, actually, it’s a great question, because my brother is getting older and older. And, we try to test with my brother as well to what the level will be of the new content in the app. Like, at Otsimo, we approach early and intensive education, because, like, you heard a lot of the time that you know it, like, if the kids can get early and intensive education, it affects our …

Anne Zachry

Right, right. Those are my kids who are now growing up and going to college, who, when we first started when they were four and five years old, that wasn’t even a thought. But, now that they’re 18, it’s like, “Oh my gosh! Look what you can do!”, because we got all those services when they were little.

Zafer Elcik

That’s because, like, I realized that, in the US, as well as in Turkey – I mean – a lot of countries in the world, because, like, we have a lot of users all across the world, and we realized that, like, getting a diagnosis and, then after that, getting the first education is a really big hassle. Like, in the US, as well, like, you need to go to IEP meetings …

Anne Zachry

Yep.

Zafer Elcik

… to get what you need, and it’s a big hassle and you lose a lot of precious months, sometimes a year, to just getting the education. That’s because we, at first, we focused on the, like, really early and intensive skills, like, small hand gestures, or social skills, and so on. But, after that, we really found out that we need to create content for a really diverse community. That’s because, like, right now we have more than 100 games, some of them is really easy, some of them is kind of middle school-ish. But we haven’t, like, created, like … I can set it up, like, we … our apps are at pre-K to K-2, but after K-2, right now, we don’t have real content. That’s because, right now, we are developing new content every month, just to keep updated. I don’t think so we will create content for university or high school and so on, but I believe it’s so go we can go to like pre-K to K-8, and so on, in the near future. We will have a lot of content for that.

Anne Zachry

Right. Well, definitely the early intervention is a huge part of it. I mean, that’s certainly important. And, you know, my background is also in educational psychology. That’s what my master’s degree is in. And I can tell you from an instructional design standpoint … but, also I’ve worked in IT. I’ve worked it … I can do some coding, it’s not my greatest skill, but it’s not like I don’t have any coding skills at all. I understand what it takes to build something from scratch in code. And you want to start with the simpler skills and move into the … progress into the more complex skills, anyway. You know, that those simpler younger skills are foundational, not only for human beings, but also for technology. So, you build on that not only with the kid, but with the tech over time, I would imagine. So, that totally makes sense.

Zafer Elcik

Yeah. Right now, we are developing these apps for more than five years, and still, I believe that we are in the, like, really beginning.

Anne Zachry

Right.

Zafer Elcik

We have more than 20 people. Like, we have psychologist on team. We have educators, developers, designers, testers. A lot of people lately, designers working with us, and so on. And it takes a lot of …

Anne Zachry

I can only imagine. I mean, I’m just trying to envision what all the logistics are of making something happen, you know, like what you’re doing. And, it’s just … you know, what you’re doing is moving the earth. That’s huge. And you said something a moment ago that …

Zafer Elcik

Thank you.

Anne Zachry

Thank you … that really caught my ear, and that was, you know, the diversity within the autism community. And, we have a saying over here that, “When you’ve met one person with autism, you’ve met one person with autism.”

Zafer Elcik

Yeah.

Anne Zachry

Because, no two people with autism are alike, you know. Just like everybody else, that no two brains are alike, even if they have a common disorder. And so, how it manifests … and I’ve got, you know … and this goes to my next question is, you know … I’ve got situations out here where we have students with IEPs that will say in the IEP that they’re supposed to have an AAC device, with hardware and software loaded on it, but they won’t specify what they’re using. They won’t name the device and they won’t name the software in the IEP, as though all AAC tech is interchangeable. And, it’s not! Each technology is different and nuanced, and every student has to learn that piece of technology as a way to learn language. Like, if you start a kid out on ProLoQuo2Go, and then you move that kid to another school, and they see that, “Oh, well. You’ve got an an AAC device with some kind of software in your IEP. We have to implement your IEP that you came in with, but we don’t know what you were using.” And they’ll go off and get, you know, a Samsung smart pad with some kind of who-knows-what software installed on it. And it’s not the iPad with the ProLoQuo2Go the kid knew how to use from the last school. And so, what happens is their language gets taken away. And so, I guess my question to you then becomes, “If there’s other technologies that are going to be used as these children get older, like ProLoQuo2Go, going into the adult world, do you think that it’s wise to start them off on something different and then switch them, or does it make more sense to get them accustomed to one piece of technology and have it carry them through, or does it make sense to teach them more than one type of AAC tech so that if one goes out of business, the other one’s still around?” I mean, that’s my concern. It’s about the people in the public schools who tend to think that AAC technology, if they’re not specifically trained in it, they think it’s plug-and-play, and you can pull one out and push another one in. And, I wonder what your feedback on that what would be.

Zafer Elcik

Yeah, my feedback on that, like, is, we have also AAC solution in our special education app.

Anne Zachry

Right.

Zafer Elcik

We are targeting mostly young children instead of, like, ProLoQuo2Go or other AAC devices as well. And I believe in … so, like, we need to introduce the AAC to the people and individuals on the spectrum as soon as possible, because, like, we have a lot of research also going on there. AAC actually doesn’t have any disadvantages to learning a language. It also have advantages to learning language or concepts of vocabulary, and so on. I believe … so, we need to, we need to show the AAC in really early stages, because it’s helpful for them. And the second thing I need to say: We need to find a way to, like, a different kind of solution. Like, sometimes you need Tobii Dynavox with a eye-tracker device on it …

Anne Zachry

Right.

Zafer Elcik

… and so on, and sometimes you need also some AT with a light reading cue and open source system with you. I think that, like, the schools doesn’t … like, schools must not mandate an AAC over others. They need to accommodate the diversity, the diversity of different assistive technology. That’s because, like, I also came across some schools, like, they’re using just one tech and they don’t want to change, but it doesn’t help anyone. Like, it just helped the teachers, maybe the managers there. It doesn’t help the kids and the family. Because I think that, like, teachers also have a lot of goals, as well, because of the … I don’t want to say that, but, like, teachers need to accommodate the diverse kids …

Anne Zachry

Yeah. Right.

Zafer Elcik

… diverse problems or … the diverse solutions of the kid, and find a way to use the … what the kids like, what the individuals like. Because, like, communication is essential, and when you are changing a device, you’re actually changing the whole communication system. And, you force them maybe to voiceless.

Anne Zachry

Right.

Zafer Elcik

And that’s a huge drawback for diverse communities. That’s because, I believe it. So they don’t need to see a lot of different AAC, but they need to stick with what they feel comfortable.

Anne Zachry

Right. It’s doesn’t do any good to teach a kid how to speak using the tool and then take the tool away from them. And…

Zafer Elcik

Yeah.

Anne Zachry

… and that’s our concern. And that, again, goes back to how special education is legally regulated here, because you can’t just go and change things up once it’s written into the IEP. That’s a legally binding contract that the parents can hold the school to that says, “Hey, these are the things you’re supposed to do for my kid.” But if the contract itself is flawed, if the what it describes in writing is not appropriate, then that’s what’s enforceable. And, what we run into is … Yes, I agree with you that you have way too many school districts that will standardize on a particular technology, because they get bulk discounts. If they buy in bulk from the vendor, they get it less per unit.

Zafer Elcik

Yeah.

Anne Zachry

And so, it’s cheaper to get multiple licenses of a particular AAC and a particular device because they can buy those in bulk, because all of these vendors have realized that they can sell more in quantity to the schools if they can convince them that their technology will solve all these problems. And, for a lot of kids it will, but you have to specify what it is in the IEP. Because, if a kid has started out, say, on your technology and it’s part of what’s being done in the classroom, if it’s not written into the IEP, and that child moves to another area, and that IEP has to follow them to the new school, but it doesn’t say in there … that they were using your technology, the new schools not going to know to put that in. And so, what we run into is sort of a mixture of too vague of a description of the accommodation, as well as what you were talking about, what is sometimes is over-specified to the point where there’s no flexibility to try anything new.

Zafer Elcik

Yeah … Yeah.

Anne Zachry

So, you don’t … you have to strike a balance where there’s enough flexibility with the way the document is constructed that trying out new technologies is not prohibited, but what the child is familiar with is also not taken away. And so, it comes down to the wording of the document. And I think that that’s something that a lot of solution developers find frustrating when they enter into the American special education system because they’re thinking, “Oh, America loves special ed! They actually have laws and they make it free and they do all this stuff!” But, when you actually try to participate in it, it looks a lot different to live through it than it looks like on paper. Yes, there’s an embracing of it. But there’s also all of these rules that get in the way of actually doing something about it, sometimes. And so, sometimes the rules are there to help, and sometimes they get in the way. And I think that, especially as an international developer, for you coming in to try and insert your product into that kind of situation and have been successful, that’s enormous. Because that’s not an easy thing for anybody to do. And for you to come from outside of the country, and insert yourself into such a heavily regulated situation, with a solution that people are actually adapting and accepting and using, I think that’s huge. So that’s … congratulations on that. That’s enormous.

Zafer Elcik

Actually, like, the system in the U.S. is changing by state-by-state. And that’s because like, maybe it’s district-by-district.

Anne Zachry

Yeah.

Zafer Elcik

You are right. They’re involved in that kind of stuff. We here are actually trying to be a company like family-friendly, or special individual-friendly. What we try to provide is an additional value. Like, they can pick what they want. Mostly … most of the other companies, like there are big corporations in the U.S., like, they are selling bulk, but they don’t update the software for a long time or doing anything like that, specifically.

Anne Zachry

That’s true. Right.

Zafer Elcik

That’s because, like … and also, some states and district doesn’t … they need to cover by IEP by law, but they have a lot of that system. That’s because kids couldn’t reach out for, like, the AAC they need.

Anne Zachry

Right.

Zafer Elcik

That’s because we try to find a way to be an affordable and accessible solution for all families, instead of, like, binding the districts or states to just forcing them into one single product. But, you are also right. On the other side, if the kids started some sort of specific AAC, I think, I believe it, so they need to follow the same system in the other schools or other districts because, like, they learn how to communicate through that. Like, it’s something like you learn in English in one nursery; while you carry on your school, you need to … you’re forced to talk in French and …

Anne Zachry

Right.

Zafer Elcik

… it’s impossible for you to actually … it’s something like that.

Anne Zachry

I agree.

Zafer Elcik

… take a special tech from their hand just because of the bulk discount or so, but it doesn’t help anyone.

Anne Zachry

Right.

Zafer Elcik

It’s helping the … maybe the district managers and so on.

Anne Zachry

Exactly. And that’s a lot of what we run into is … we run into administrators who spend zero time in the classroom, who are business office people making decisions that affect the classroom based on finances, which is illegal, but it happens all the time, because they don’t know any better. They don’t realize their decisions are going to have that big of an impact on a kid. They’re not even thinking about that because their business office people. And so, that’s I think it’s … we’re running into an issue over here with respect to how the bureaucracy is organized. It was created during the Industrial Revolution and emulates a factory. And, even though modern business technology has evolved well beyond that, public education technology has not. Public agency technology has not. The public sector, our government agencies, are decades behind technologically speaking, which I’m sure you’ve encountered with all of their different business systems …

Zafer Elcik

Yeah, yeah.

Anne Zachry

… and things and accounting systems and was like, none of them are running the same operating system. None of them are running the same software. So, it’s a highly disparate situation. And it kind of reminds me when I was working in IT years ago, around the, like, the late 1990s, early 2000s. I went through that whole Y2K thing … and … when I was working in IT. And, at the time, the customers that I had for the company I worked with were mostly in the freight forwarding business. And, it was when U.S. Customs was switching to paperless. And, my goodness! The pandemonium and chaos that broke out amongst all of the people who handle paperwork for shipping goods back and forth overseas. I mean, this was all a paper driven processing, and now Customs wanted to go paperless, and it was something. And, nobody had the same operating system. Nobody had the same software. But, everybody’s stuff was somehow supposed to magically talk to U.S. Customs electronically. And, making that all come together over the span of like five to seven years was outrageous. But at the same time, I see that now happening in public education where we’re finally starting to reach that place where we’re just going to have to deal with it in do the upgrades. And, I think that once the upgrades get done, and we get to a more cohesive modern system, that it’ll be a lot easier because … we have better technology being implemented in the classrooms than we having implemented in the business offices. And, I think that that’s a lot of the problem is that we have this antiquated bureaucracy responsible for teaching modern children. And so, we have all these innovators like you bringing technology in, but what’s it supposed to integrate with? It’s like a green cursor on a black screen or an amber cursor on a black screen. I mean, some of the tech is so old. And so, I know that you’re having to go in and blaze a trail in a place where, you know, in a space in an industry where technology is not as easily as embraced as it is in other places. So that’s another thing that you have to be proud of yourself for, because it’s another accomplishment, to be able not only to come into the American market, with all of the regulations involved, but also just all of the backwards technology that you’re going to have to overcome. And so you’ve really taken on something that’s enormous. You know, I have one last question. I have a young man on my caseload that I’ve been with for a very, very, very long time, and he’s severely, severely, severely autistic. But he’s even more severely intellectually disabled. I think the intellectual disability gets in his way more than the autism does. But, when he was much younger, he was very self-injurious. And he would hit his head against very hard surfaces, like floors, and roads, and walls and …

Zafer Elcik

Yeah.

Anne Zachry

… and so he was a head-banger. And, he would hit himself and he would hurt other people. And, it was because he couldn’t get his words out. And, when he would speak, people wouldn’t take him seriously, because he did a lot of scripting. So they didn’t listen to anything he said, even when he was trying to speak for real. And so, it got to the point where the behavior became his method of communication. And it took a long, long time; he had to be institutionalized to break him of that habit, and teach him to use his words again, and to get him to, you know, where he could be more functionally communicative without engaging in these violent behaviors. Unfortunately, in the course of all of this before I, you know … by the time I got involved with him, a whole lot of harm had already been done. And he had managed to, as best as we can tell, detach his own retinas from head-banging. So, now, he’s permanently blind.

Zafer Elcik

Oh, wow!

Anne Zachry

He hit his head so hard that he blinded himself, or at least that’s what the doctors are saying, because he just … all of a sudden, his retinas peeled off the backsides of his eyeballs and he couldn’t see anymore, and, so, you know, and it was after years and years of head-banging against really hard surfaces. And, his school would … they didn’t know what to do with him, so they would just put them in a seclusion room and leave them in there to whack his head on the wall for 45 minutes at a time. And, needless to say, there was a lawsuit. And, you know, we got compensatory services for him. But what we can’t do with him, now, is teach him to use a traditional AAC or any kind of device-based technologies where, you know, all these wonderful things like what you created, because he doesn’t have eyesight anymore. He can’t see the screen.

Zafer Elcik

Yeah.

Anne Zachry

And so, you know, we’ve had him evaluated by experts to help figure out what we can do for this guy, you know. And, he’s now my friend. I love him to death. He’s my sweet little lamb. He … I mean, I don’t have any behavior problems with him. But, here he is now, you know, as a young adult finally starting to say, “Okay, well, I think I want to have a life and do something with myself,” and the tools and the resources are so now limited for him because of the eyesight loss, because everything for autism was all about visual schedules and visual cues.

Zafer Elcik

Yeah.

Anne Zachry

And, you know … and I can’t do that with him. And so, what we’ve had to do is, I create tactile schedules for him where I take dollhouse miniatures, and I glue them on a great big piece of foam board. And, I make like a visual schedule, but instead of looking at it, he’s got to touch each item, and it moves through a progression so that he can, you know, follow the flow of what it is we’re going to do. And once he learns the routine – once he gets that ritual down – he knows the order of events, I don’t have to use the schedule with him anymore, because he already knows what’s coming. Now he knows the routine. But, to teach him new schedules, I would have to glue together $200 worth of dollhouse miniatures off of Amazon onto a piece of board to give him an idea of what was about to happen. And, what I’m not seeing … and so, I’m kind of putting it out there, hopefully you’ll … this is something you can think about … are tools for individuals with autism who are also blind or are deaf and have these sensory impairments on top of the autism that makes the typical solutions inaccessible to them. And just your your thoughts maybe of what you think might be a good way to go in terms of adapting a device for use with someone. Like, I can see if someone has hearing loss … hearing loss, you could do vibration. You could make the device vibrate …

Zafer Elcik

Yeah.

Anne Zachry

… in the absence of sound. But when for someone with vision loss, I don’t know how you replicate a visual schedule, other than to just audio record yourself, like in the voice recorder, you know, just speaking your way through it. I’ve done that, too. But it doesn’t seem to be as powerful as a tactile schedule. And I’m curious as to, you know, when I talk to developers, what do you think about that? What do you think could be done for someone who’s got multiple disabilitiees and the autism is just one of many?

Zafer Elcik

Yeah, it’s a nice question. Like, we also came across like, people with hearing disorders with autism, and so on. We try to make our product as much as accessible for that. I don’t know, literally, like, because we are not doing visual schedules. I don’t know, in specific people region schedule basis. But for the Apple devices, there is, like, assistive disability techniques. And I know that, for example, ProLoQuo2Go has a system. You can actually use the switches or you can … they will actually scan the screen with them. But, you need to teach them this assistive tech on the Apple devices to the kid. And, I believe it, we are also … there will be our apps right now. I can’t say we are 100% accessible for vision problems, or hearing problems and so on, but you can use that assistive settings in the settings in Apple devices. And, combined with that assistive settings with the apps like us or ProLoQuo2Go, or if you’re using a visual schedule app, you should reaching out to developers and saying them, like, “Could you implement assistive settings to our device on your app, because we are using it for for this, this this?” And, that’s the only chance I can see from my point of view …

Anne Zachry

That stands to reason.

Zafer Elcik

Apple has a great assistive settings for people with vision problems, as well as hearing problems. That’s because, if he or she can use them assistive techniques while using the device, apps also can be a part of it and you can use that settings in the specific apps, and you can just scan the screen instead of picking seeing regionally, and so on. You will see here what you, like, the device actually loudly saying that what they’re clicking, and they can actually talk thanks to that, while just memorizing what they were seeing. That’s doable and a lot of companies are doing but, yeah, it’s a one more additional step of teaching.

Anne Zachry

Is it like an API where you if you’re a developer, you could reach out to Apple and say, “Hey, we want to link in with your accessibility tools. What’s the code?”

Zafer Elcik

Yeah.

Anne Zachry

Okay.

Zafer Elcik

Yeah, it’s kind of an accessibility feature. You use that kind of specific codes in your app. At times, too, the Apple accessibility feature actually can be used in the app as well. The name is … or … you can use voice over, or you can use in the voice over settings. You have, like, Braille alphabet, as well as, like, the others. And also hearing devices can be connected to the Apple devices and you can use for specifically hearing disorders and so on. That’s because like, the settings if the app using that specific API or SDK, for just specific assistive technology settings, you can use it in the app as well. And Facebook, Google, using these APIs a lot. You can test it out there. You can see how they … how it’s working. And if you’re using one, we just schedule it out. You just reach out to developers and say what you want. That I believe in, so they will implement it in near future.

Anne Zachry

That’s a really good point. I know that one of the colleagues that I work with who I’ve actually have involved with this student in the past to teach independent living skills, she herself is blind. And she … her whole house is an Apple smart house at this point, because she’s become so dependent upon the Apple technologies to … as her accommodations …

Zafer Elcik

Yeah.

Anne Zachry

… but it’s interesting you would say that because the first time I introduced the two of them to each other, we met at a restaurant in the community that is entirely staffed by individuals with mental disabilities. And, we were there to meet each other – for him to meet her – and I went inside to go get the menu. And, there was a line! And, I had to wade through a sea of people before I could even get the menu to bring it back out to him and read it to him and ask him what he wanted. And my colleague had already looked up the menu on their website, and had her phone read it out loud to the both of them so that, by the time …

Zafer Elcik

Yeah.

Anne Zachry

… I got back outside with the menu, he already knew what he wanted.

Zafer Elcik

Yeah. Like, Apple devices are expensive, but Apple as a company, really pro assistive technology. That’s because, like, they devices are best in case for using that kind of technology.

Anne Zachry

Right, they’ve got the most experience working with this kind of stuff; they’ve been doing it longer. And well, it just for the for the benefit of our listeners who are hearing this conversation, I mean, here in the United States, if you if you’re on the autism spectrum, especially if you have other disabling conditions, other developmental disabilities, you’re also going to be eligible for services from Department of Developmental Services. And every state has a Department of Developmental Services. Now, again, federal regulations that come down from the top, just like special education law, but then how each state …

Zafer Elcik

Yeah.

Anne Zachry

… implements the federal regs varies from state to state. And so with Developmental Services, some states, the DDS is its own thing, and you just go to the DDS office and that’s who you deal with. It’s the state agency, and they have offices in different communities around the state. But in California, and in other states, it’s a little bit different, where you have what’s called regional centers. And, regional centers are non- … here in California, are non-profit organizations that contract with California’s Department of Developmental Services. And, their function is to provide anything that someone with a developmental disability needs above and beyond what any of the other generic agencies have to do. So, for example, for a child who’s in, you know, K-12 age, the school district is going to have the primary responsibility for meeting their needs in terms of publicly funded programming for people with disabilities. But if there’s anything that doesn’t have to do with school, like afterschool childcare, or social skills in a non-school setting, like a Boy Scout troop, or something like that, there’s services above and beyond what the school is obligated to do, those things fall to regional center. So, if a child gets an iPad with your technology – with Otsimo – loaded on it, for example, at school, that’s only for school. If they need to be able to use it to communicate with people outside of the school day, they need a second separate iPad that they keep at home and take out into the community, and that’s regional center. Because the school’s …

Zafer Elcik

Yeah.

Anne Zachry

… only responsible for what happens at school, or anything to do with homework, you know, anything that’s school related. But, if it’s beyond that, if it’s just life in general, now, you’re talking about regional center. And, for our individuals who have graduated from high school with a diploma or aged out of special ed, and now they’re young adults and they’re going out into the world, regional centers and the Department of Developmental Services are obligated to serve these people their entire lives, not just when they’re children. So, if someone is using an iPad with your technology, or ProLoQuo2Go or anything else, and then they’re no longer a public school student – they’ve grown up, they’ve gone on – but they still need that iPad with that technology on it to communicate with people, then they have to go back to DDS, or regional center, depending on how its configured in their state and say, “Okay, well, this is a life functional skill thing for me. This is an activity of daily living. If I don’t have this device, I don’t have a means of communicating with people.” And so, the laws very definitely protect their communication rights. And so, it falls on a different agency to purchase that equipment. It doesn’t automatically fall on the shoulders of the families to come up with all this money to buy all of this tech. There’s public dollars out there for it. Just, people need to know which agency to go to for which circumstance. If you’re talking about someone who is an adult who’s looking to get a job and needs to have this technology to communicate in order to be employed, well, now you’re talking about the Department of Rehabilitation, which is also federally funded and also regulated under the same bodies of law as special education law on a federal level. But again, every state does it different. Some states will roll their Department of Developmental Services and their Department of Rehab together as one solid agency that takes care of both of those responsibilities. Where others, like in California, DDS it’s its own thing and it’s got its regional centers, and the Department of Rehabilitation is a completely separate entity that you have to go to separate from everybody else and go ask for their help. And so, getting all of these different agencies that each may have an individual responsibility to one person can be a lot, but any one of these agencies could end up having to finance the technology, the communication device and software, that these individuals would need. And so, I’m just putting it out there not only for you, but for our listeners, that there’s more than one way to get the job done, and if one avenue is not appropriate for an individual, there may be another avenue that is, and that could still make your technology accessible to people outside of just the schools, even if they can’t afford to buy it personally. And so, I just, you know … Yes, I want my families who can afford it, they can just go straight there and get it. It could even be something they could get reimbursed on by the schools, if they buy it themselves because the schools haven’t given them anything appropriate, and that ends up working for them. And so, there’s a lot of different ways here in the United States where families can access these tools, including your technology, even if it’s not through the public schools.

Zafer Elcik

Yeah.

Anne Zachry

There might be another way to do it. So I just wanted to put that out there. Have you worked with any other agencies other than the school districts out here?

Zafer Elcik

Not yet. But we will like to working with agencies and so on. Right now, we are on track to complement …

Anne Zachry

I think what I’m going to do is I’m going to share your information with, here in California, we have First5, which is an early childhood intervention program, separate from the schools, but it works with them, sort of, but it’s separate. And, it is all early intervention. And, very often they’re the ones making the referrals.

Zafer Elcik

Yeah, that would be awesome.

Anne Zachry

Yeah, they’re the ones often finding out, especially when you’re talking about children from low-income, non-English-speaking families, immigrant families … they don’t know what to look for necessarily, or, even if they see something’s up, they don’t know what to do.

Zafer Elcik

Yeah.

Anne Zachry

Very often, First5 will be the one that catches it and makes the referrals and gets these kids into the appropriate supports and services. And so, this is the kind of stuff that they’re going to want to know about. So I’m very definitely going to share it with them. And, then I’ll also have it on our website and everything and I’ll put it out there on our social media.

Zafer Elcik

So, I forgot to mention we have also a Spanish version, as well.

Anne Zachry

Ooooh!

Zafer Elcik

Many families are using our apps in U.S., is reaching out to special education.

Anne Zachry

Oh, that’s huge. That’s enormous to know. I’m excited to see what your project is going to be doing as it expands use through here in the United States, and as it evolves over time. I’m going to be putting links to it on our … on this … the post for this podcast. Wanted to ask me about anything?

Zafer Elcik

No, thank you for your time. Like, it was a nice coffee talk with you. Like, I haven’t imagined that, like, we are going to talk in this prophetic situations, and how I am thinking about it. It was nice questions. It was the one of the best questions I ever ask. Thank you for that and thank you …

Anne Zachry

Oh, of course! Thank you!

Zafer Elcik

… for your time and showcasing our product, as well as me. Happy to see you in two years, three years after this podcast, out with the new products focusing on adults on spectrum. That will be really awesome!

December 23, 2021January 13, 2022

Amazon Gift Card Contest

KPS4Parents will be giving away a $10 Amazon eGift card on March 31, 2022!

It’s easy to enter to win.

https://www.patreon.com/posts/ask-anne-episode-56535240

Just watch this introductory video for Ask Anne and post a special education-related question below or on this video’s post on Patreon at https://www.patreon.com/posts/ask-anne-episode-56535240.

You can also submit your questions for Ask Anne at https://kps4parents.org/home/anne-m-zachry-m-a-ed-psych/submit-your-questions-to-ask-anne/.

Ask Anne is a patron-supported program on Patreon in which KPS4Parents’ CEO and lead advocate and paralegal, Anne M. Zachry, M.A. Ed Psych, answers questions submitted by parents of children with special needs, professionals who work with special education students, advocates and attorneys for children with special needs, and others with questions about how publicly funded special education is supposed to work.

With more than 30 years of field experience advocating for children with special needs, designing and evaluating individualized educational programs, supporting attorneys in special education and disability-related complaints and litigation, and filing complaints with state and federal regulators, Anne has insight into the technical requirements, evidence-based practices, and public education agency politics.

Give us a good question for an upcoming episode of Ask Anne by midnight Pacific Time on March 30, 2022, and you could win the $10 Amazon eGift card.

Only serious special education-related questions will result in contest entry. The winner will be chosen at random from valid entries and announced on March 31, 2022 at 5pm Pacific Time. Selection of questions are at the sole discretion of KPS4Parents.

All questions actually used in upcoming episodes of Ask Anne will include a shout-out to those who asked them plusHonorable Mention shout-outs to up to 10 people who asked great questions that didn’t quite make it into each episode.

The winner, the individuals whose questions are used in our upcoming episodes, and our Honorable Mentions will all also receive a handwritten note of thanks from Anne. We hope you find this an engaging way to get answers to your special education-related questions and look forward to answering your questions in upcoming episodes of Ask Anne.

Submit your valid special education-related question to us for consideration and entry into this Amazon eGift Card Giveaway. There is no limit on the number of entries per participant, so long as each entry is a unique, legitimate question specific to special education appropriate for Ask Anne.

To view past, present, and future episodes of Ask Anne, subscribe on Patreon.

October 28, 2021October 28, 2021

An Appeal to My Colleagues

*Urie Bronfenbrenner, Human Development Researcher*

I have a million other things I need to be doing right now, but this is one of those moments where if I don’t stop and purge these thoughts from my mind into print, they will torment and distract me until I do, so the sooner I finish this post, the sooner I can get back to work without continued torment and distraction. I wasn’t intending to post, right now, because my caseload is blowing up and my other endeavor, The Learn & Grow Educational Series, is starting to require more of my attention lately as it continues to experience its own growth and expansion. My plate is full, but it’s the reasons why it’s full that prompt me to stop what I’m doing and post this today.

In the course of analyzing the incoming bombardment of data that is my life, I’m seeing the connections between the specific issues I’ve chosen to take on with my professional skills and the turmoil being experienced by the world at large, right now. I’m seeing common allies and culprits across issues, and recurring themes and trends that can be generalized from the work I specifically do to the work that needs to be done overall to cure the defects of reparable systems, and overhaul and replace systems that no longer serve us.

Today’s post is an appeal to my colleagues to think beyond the bubbles and silos in which you may exist as professionals and recognize the need for your respective skills to contribute to much larger solutions on a much simpler scale. Capable, ethical, and responsible people each making what contributions they can along they way, just in the course of doing what they were already going to do, can reshape society into a healthier version of itself. We need to see our everyday activities as substantial contributions to the world that exists around us and appreciate that every little decision we make really does matter. If enough of us are thinking right and making the smart, ethical, and responsible decisions, we can help influence those around us who are less capable, thereby loving our neighbors as ourselves and being our brothers’ keepers when necessary.

We each help make the world we live in be what it is through our individual actions with each other. Those actions and their outcomes become woven together into complex relationships that evolve into established systems supported by nothing but learned behaviors. We don’t do them because that’s the way things work; the reason why that’s the way things work is because that’s the way we do them. That being the case, we have every reason in the world to believe that enough smart, ethical, altruistic people can facilitate healing throughout society to a more powerful degree than a minority of fear-based thinking, hate-mongering cowards can try to destroy it. It comes down to mindfulness and living a life of purpose that serves the common good while also serving oneself and one’s immediate loved ones in healthy and constructive ways.

One of my favorite theorists from human development research is Urie Bronfenbrenner. The lame graphic below is one I created in graduate school so as to avoid a copyright infringement by grabbing someone’s more professional graphic off the internet, but it illustrates the model. Follow the above link for more information about Bronfenbrenner’s model, if you’re not already familiar with it or need to brush up on it. It’s quite sobering in light of current world events.

*Bronfenbrenner’s Socio-Ecological Model of Development*

Bronfenbrenner realized that, while nature had a certain degree of influence on the raw materials with which each person started out in life, it was the environment in which that person was raised relative to those raw materials that dictated the unique development of that individual person. No two people who have ever existed, exist now, or will exist in the future will ever be entirely identical to each other because, regardless of genetics, actual life experiences that shape people through learning are never identical from one person to the next.

Genetics provide for a whole lot of variability, but they’re still technically finite in spite of their vastness. Environments are ever-changing; they must be adapted-to in the moment via individuals’ behaviors and over time via genetic mutation of the species.

For those of you among my colleagues in special education and related fields who are expected to individualize programming according to the unique needs of each constituent served, this shouldn’t be a leap of logic for you. For people unfamiliar with what it takes to truly individualize something for another person, particularly another person with diminished capacity to communicate their needs, it might as well be alchemy or voodoo.

The bottom line is that everybody thinks differently and has relative strengths and weaknesses. You can’t assume that just because it’s obvious to you, it’s obvious to everyone else. But, you also can’t assume that just because it doesn’t make sense to you, it doesn’t make sense to anyone else, either. The sword of understanding cuts both ways for each of us.

We’re each good at some things and not so good at others; that’s normal. Some people, however, are not so good at recognizing when they’re not so good at something. This goes to another body of psychological science, the Dunning-Kruger Effect, but that’s a whole discussion unto itself that I’ll link to but not delve into, right now. One lay person’s less-than-kind distillation of it, once it was explained to them, was, “So, basically, dumb people are too dumb to know that they’re dumb.”

The point is that those of us who get it have to carry the weight of those who don’t and/or can’t. It’s the opposite of authoritarianism, which demands the compliance of coerced individuals; what is called for, here, is the responsible stewardship of public service agencies to actually serve the public according to their mandates in conformity with the professional ethical standards of their involved professional disciplines.

For those of us supporting the needs of individuals with disabilities, we understand that the situation sometimes requires helping people exercise their informed choices as independently as possible. Other times, our responsibilities require us to protect the rights of those who are incapable of making fully informed choices without our help and are otherwise helpless and vulnerable to exploitation. We understand this better than most people and we need to recognize that we are collectively unique as a result. It’s not that big of a stretch between the issues of conservatorship abuse and voter suppression and nullification laws.

A whole lot of science in the areas of psychology, sociology, communication, behavior, instruction, organizational planning, leadership, and related disciplines has been conducted over the last 100 years. Many of us have access to that research but don’t make the time to follow it. I encourage every one of my professional colleagues to create a saved search for a specific body of peer-reviewed research and, whenever you are able to grab a free moment, take the time to run the search and read something new from the science that tells you something you didn’t already know, then think about ways to incorporate it into what you are doing in your work and follow through on applying them.

What small change in a routine task can you make that applies the knowledge you’ve gained for the better? Over time, how much better will things incrementally get with each little new thing you tweak after reading from your saved search? Is it a relevant authority to something you are currently writing? Does it help you better understand how to individualize a particular constituent’s goals and services? Is there another colleague who you think might benefit from the information with whom you can share it? Can you share your thoughts about it on LinkedIn and/or other professional online platforms in a constructive way?

Nothing exists in a vacuum. The more we recognize and honor the logical connections among our respective professions and how the science applies to out constituents and their service needs, the more we realize that Bronfenbrenner was right.

J. V. Wertsch, who worked with Bronfenbrenner, states in his 2005 review of Bronfenbrenner’s book, Making Human Beings Human,”Starting with the assumption that ‘to a greater extent than for any other species, human beings create the environments that shape the course of human development’ (p. xxvii), Urie has argued that it is incumbent on all of us to create decent, nurturing environments for human development.” [Emphasis added.] In my opinion, that’s something we have yet as a species to do; ants do a far better job of this than we do.

Unfortunately, because we still are not proactively applying Bronfenbrenner’s science as an ongoing element of how our society functions, we still do not love our neighbors just as we love ourselves and we are not our brothers’ keepers when our brothers go astray. We blame and punish people for having weak minds rather than remediate the effects of their shortcomings. As a species, humans generally treat their abilities as unfair advantages and use them to exploit others. They should be humbled by the responsibilities that come with their gifts and use them prudently with good intent, but in the absence of informed, deliberate planning, what has naturally been allowed to come to fruition is a society that rewards abuses of the rules more richly than compliance with them.

Those of us trying to facilitate functional independence among our most vulnerable children and adults know all too well that there aren’t enough of us with the necessary expertise to change the maladaptive behaviors in every bad situation that is collectively poisoning society, right now. The most we can do is the most we can do in our respective situations. We have to hope people will start copying our strategies that work when they see our successes. We need to start generalizing our successes into other areas where the same degree of expertise is not available, just as a matter of making sure our democracy thrives and functions as it should according to what can be proven true and responsibly effective for everybody.

Further, we as a society have historically regarded those individuals on the cusp between “can’t” and “could with learning” as an acceptable shade of gray on the spectrum of social involvement, but now they have become an outspoken and increasingly violent minority of individuals who cannot successfully function with independence in the quickly evolving world. They don’t know how to adapt but they can still wreak havoc on their way down the tubes.

The only difference between “can’t” and “could with learning” is the provision of instruction. The outcomes of both are the same if no instruction is made available; there has to be the “with learning” part in order for the choices of the person who can learn to differ from the choices of the person who can’t.

The problems we are seeing in the world today from misinformation being spread on the internet goes to the degree to which many internet users have no idea how search engines and social media algorithms indulge subjective biases and feed them whatever will increase their engagement without regard for how those choices impact the individual user or society on the whole. When all of our individual choices put together collectively shape the fabric of society, an artificial intelligence that only reinforces user engagement with neutral disregard for the quality or nature of that engagement will, by design, radicalize the most violent of the weakest minds into acts of terrorism. It weaponizes a previously harmless sub-population by turning them against us in irrational, violent ways and selling them the products to do it.

At the end of the day, humans are again proven to be part of nature and not something separate from it. The natural consequences of poor choices eventually catch up to people, one way or another. Sometimes other, innocent people become collateral damage along the way, and its in the interest of minimizing those numbers now and ultimately eliminating them as soon as possible that those of us who already work in professions helping people with disabilities need to generalize our skills into other aspects of human need where possible. What those of us working with individuals challenged by mental health issues already know can be imperative to addressing domestic terrorism.

As an example of generalizing one’s skills beyond one’s professional area of focus, while I still represent students with disabilities and consult with their parents as a lay advocate, provide paralegal support to attorneys representing students with disabilities in various legal proceedings, and design and implement compensatory programs for individuals with disabilities who were wrongfully denied services by publicly funded agencies, I also created something else using my knowledge and skills.

I created the Learn & Grow Educational Series to address food insecurity and sustainable living issues. The science of instruction is also the science of marketing, and social media can be used just as effectively to push learning as it can be used to push sales. In many cases, content creators push both, with the sales funding the instructional content and the instructional content driving the sales in a synergistic way; if it were organic, it would be considered symbiotic. The science I rely upon to determine appropriate educational goals and services for my learners with special needs is the same science I rely upon each time I create a new Learn & Grow learning experience for my online and in-person learners.

Through Learn & Grow, I’m able to teach people everywhere how to grow their own fresh fruits and vegetables anywhere using free and/or inexpensive materials, even if they have no open ground for growing. I use evidence-based instructional practices to teach them how to make self-watering containers from buckets for patio, balcony, fire escape, and rooftop gardening.

These containers are water conservative, using as little as one-tenth the amount of water of in-ground growing, and self-regulating, meaning the soil is never too wet or too dry so long as the reservoir beneath it doesn’t run dry. These containers are portable, meaning renters can take their gardens with them when they move. I’ve moved my own garden five times since I first started it in June of 2013, and the goji berry thicket I started from seeds when I first started the garden is still going strong in its original container, giving me two crops of berries per year.

The design of these containers is totally open-source, public domain knowledge. What is unique to Learn & Grow is the body of evidence-based instruction and project ideas using this gardening method that I provide in person and which lives online through Learn & Grow’s website, Facebook page, Instagram account, and video channels on YouTube: Food for Thought and Learn & Grow with Emmalyn. This is where I was able to apply my skills normally used in special education and disability resources to address other types of challenges the world is currently facing, specifically food insecurity and climate change. In October 2020, I expanded the Learn & Grow curriculum to include sustainable living methods, starting with alternative energy sources and gray water recapturing.

I’ve most recently started conducting online Meetups using Zoom and Prezi for urban gardeners in the greater Los Angeles area who can benefit from Learn & Grow’s instruction regarding self-watering bucket gardens. Without any marketing, my online classes are getting bookings and my Meetup group continues to grow in membership. Once I start marketing it, I expect to reach a larger number of learners who want to be able to grow their own food in their apartments, condos, mobile home parks, and other limited growing environments. This is an adaptation to their environments I can help them make, a lá Bronfenbrenner, to create a greater quality of life using sustainable means in a very healthy way. If they get their buckets used from local restaurants or bakeries, they keep that plastic out of landfills and reuse it for something entirely purposeful.

For me, achieving increased food security, recycling, water conservation, and portability with a single solution is too good of a thing not to share. It’s not directly related to publicly funded services for individuals with disabilities, but it relies upon the same sciences to be successful. I can generalize what I already know from what I’ve been doing professionally for the last 30 years to tackle an entirely different area of need, and it’s not that hard. It’s not any harder than representing a child with special needs in a federal complaint or supporting a child’s attorney in due process, and I can do those things.

Plus, I’m taking advantage of online tools to automate as much of my Learn & Grow content as possible, so the planning phase is followed by the scheduling phase which is then followed by an automated implementation stage that frees me up for months to years at a time to focus on other things, like the individuals on my caseload. I can drip instruction just as easily as I can drip marketing messages using the same online tools.

I also recently rejoined my local Kiwanis club, which is a community service organization. I’m helping the club use Learn & Grow to provide self-watering bucket gardens to community-based programs, like adult day cares and preschools, as well food insecure individuals through local food pantries, hunger relief programs, and shelters. I’m able to address food insecurity through a more direct means by partnering with my local Kiwanis club, which has ample volunteers and existing trusted business partners willing to invest in the right community service projects with their donations. This is a win-win-win for all involved, and it only happened because I went outside of my normal professional duties to tackle another social issue in ways that only someone with my unique skill set could.

All of us have skills and expertise that can be generalized to another problem in the world other than the one about which you spend most of your time thinking. I promise you that finding some other way to express yourself and apply your skills to something hugely constructive towards making the world a better place will open your mind in ways that makes you a better thinker back on your regular job and give you a healthier outlook on life.

Food shortages and economic collapse were the unknowns I most feared back when I started Learn & Grow in 2013. That was only made more real when Learn & Grow was discovered by panicked Venezuelans in 2016 when their country’s economy collapsed and their government subsidized food supply collapsed along with it, leaving them with no food in their stores and no more coming any time soon. I’m not afraid of that, now. My garden has grown to sixty-one self-watering containers and I have four laying hens who give me eggs throughout the year. Come what may, I’ll be okay for food.

The shortages in the stores at the start of the pandemic and the supply chain shortages happening right now have only been slight inconveniences compared to what could happen if the whole supply chain were to collapse altogether. Most people have become dependent upon it, and that’s dangerously unhealthy. If the commercialized food supply collapsed tomorrow, what situation would you be in?

As much as I live and breath special education and disability resource science and law, I can’t have figured out a way to dodge the bullet of a collapse of our commercialized food supply, have the ability to teach people according to their individual capacities to learn, and not use my skills to teach other people what I’ve figured out to survive a very dire time of food insecurity in this country. And, I know I can’t be the only one.

I know there are others of you out there who see issues with social justice, public health, climate change, domestic terrorism, and/or the ongoing threats to our democracy that would benefit from your unique perspectives and skills. Something horrible happening in the world today has factors in common with a problem you’ve already solved. Your solution translates into something that can be generalized to solve other serious world problems. Don’t keep it to yourself.

I’m not special; I’m just specialized in my knowledge and skills, and they can be applied to more than one context. That doesn’t make me unique; it makes me a member of a unique sub-population of individuals with relevant skills.

You, my professional colleagues, can do something about society’s ills today without it being political. Helping people everywhere grow their own food doesn’t take sides in anything. Everybody needs to eat. Food is a basic survival need no matter what somebody chooses to believe. Individual food security is a highly personal and universal topic with which every person can relate. So is access to clean drinking water, safety from violence, affordable housing, and a host of other issues begging for your expertise.

Most cultural disputes are about access to resources, and the United States is experiencing a cultural civil war, right now. It is fueled by misinformation meant to tear our country apart being published online by bad actors exploiting the capable hands of people with weaknesses of the mind who fear losing what they have to imaginary threats they believe to be real. People who can’t or won’t face their real problems will imagine things to be their absolute worst without confirming whether they actually are. They catastrophize things. It’s a symptom; it’s not healthy. It’s a feature of anxiety, which is always about lacking predictability. They cling to the familiar because they can’t predict anything else and their fear of the unknown is greater than any discomfort they may feel, if any, in their predictable routines.

People who can’t actually understand what is really going on have no sense of predictability about what is about to come. They will pin their expectations to what they want to happen next as opposed to what the facts dictate will happen next. They can’t follow an evidence-based thought process, so they substitute it with wishful thinking, but unrealistic expectations are just preconceived resentments. When things don’t turn out according to their wishes, they get mad at reality and insist that it bend to fit their fantasies rather than adjust their expectations according to what actually is. They don’t understand everything going on, so they can’t adjust their thinking according to all the relevant facts.

How can you, as a professional, interact with people who exist in this state without demeaning or condescending to them? Can you interact with them fully understanding that, like many of the individuals with disabilities we serve, these people are doing the best they can with what they have and they need our loving, responsible guidance to find their ways to the right side of things? If we just help them address their needs in more pro-social ways, they won’t feel compelled to attempt to meet them in anti-social ways. It’s basic ABA.

I’m asking my professional colleagues to please strongly consider using your knowledge and skills to address any of the many nonpartisan issues that are currently challenging the human species, right now, that are outside of your normal area of practice. See if there is a Kiwanis club in your local area that could use your help. Identify an unmet need in your local community and find out what is needed to address it, then find other people who have the necessary skills that you lack and start your own thing. Just find a way to contribute, even in a small way, to a nonpartisan issue in your community that isn’t currently getting enough attention.

The technology available to us today is a tool, but, like a hammer, it can build or kill depending on how it is used. I’m with Urie Bronfenbrenner on this one; we should use our knowledge and resources to make the world a place that meets everyone’s needs, rather than a place that meets the needs and wants of those who know how to exploit and take advantage of those who don’t. The tools now available for people to collaborate and get things done remotely, thanks in no small part to the necessities that arose with the pandemic, are phenomenally powerful and easy to use. The tools to create online content decrease in cost and become increasingly rich in features over time, and most people only need a few good features to make stellar content. Learn more about the ways you can participate in your citizenship in nonpartisan ways by studying the research on servant leadership.

If you find yourself in an environment in which acting in the short-term for immediate gain comes at the cost of considering the long-term consequences, and you can’t be a positive influence for more responsible thinking and planning, get out. You’re wasting your precious gifts on people who will never appreciate them and would use them to harmful ends if you let them. There are other places you can go where your gifts will be appreciated and put to proper use, where you can earn a decent living and live with yourself in peace. You just have to take the time to find it or create it. That’s not always easy, but it’s always worth it.

There is no way to memorize a script for every possible thing that could happen in the future in order to be prepared for if/when it happens. Nobody can remember that many scripts, much less predict every possible future in advance and develop a script for it before everything changes and new scripts are needed. Living a life that follows the same specific script in order to keep it predictable is a symptom, not an adaptive strategy. That’s not participation; it’s approximation. It’s parallel play.

The only way a collective of people can work together towards a common goal is to act according to common guiding principles. For example, if everyone helping with Learn & Grow agrees with and abides by the guiding principle of, “Make sure everyone can grow enough healthy food to survive, come what may,” whatever decisions they face along the way will come down to whether or not their choices facilitate everyone growing enough food for themselves, come what may. If you have a fixed outcome in mind, it’s the next best thing to having a script for every possible contingency. Having that fixed outcome limits the number of actions you can take, so it whittles down your choices to a more manageable list of alternatives. The more ethical conditions that have to be satisfied by the solution, the narrower the options, meaning the easier it is to decide.

What makes leadership and decision-making so overwhelming for most people is the sheer number of possibilities and figuring out which one makes the most sense. By using a consistent, agreed-to guiding principle as a “North Star” for decision-making, team members can be consistent among each other with their choices and actions towards achieving the common good. We don’t need a savior to swoop in and save us. We just need to be mindful of how our actions throughout the day shape the world around us and consciously choose actions that promote the things in the world we want to see based on what we’ve learned from all of our life experiences, including those most commonly associated with work, even if at only the tiniest level. It all adds up in the end, and every little positive contribution matters.

This is mindfulness meeting purposeful action, and I hope you’re inspired use your gifts to help in impactful, constructive ways that remind everyone you touch that we only get through these terrible times by working together. Because of your professional skills, you’re in a unique position to help humanity survive this time of upheaval and transition and thrive once the worst of it has passed. I look forward to seeing what truths each of you end up speaking to power over the next few years and appreciate the efforts of all of you who choose to contribute in ways you can towards a better tomorrow for everyone.

October 21, 2020November 6, 2020

Fascist Trends in Special Education Non-Compliance

“Fascism” is a scary word that is far too often slung as an insult by people actively engaging in it who don’t understand what it actually is. In today’s post/podcast, I want to talk about what fascism actually is and how it shows up in all aspects of public agency functioning, but particularly how to recognize it in special education.

Unfortunately, these days, there are no better angels to appeal to within many public agencies, including public education agencies. It’s not that the entire barrel of apples is spoiled, but enough of it is that the good apples either leave or go bad, too.

Bureaucrats accustomed to gaming the system for their own financial gain at the expense of children with special needs have historically engaged in some pretty unscrupulous behaviors over the years, but they just could not resist the opportunity to exploit the pandemic to advance their self-serving agendas. They’ve become experts at seizing upon opportunities to escape/avoid their job responsibilities while still collecting their government paychecks.

For far too many individuals, employment in public service has become a form of welfare fraud, only public agency employees get more free government money and perks in exchange for nothing than actual welfare recipients, who have to perform for the pennies on the dollar they receive by comparison. In California, for example, the average special education director is paid around $125K per year plus benefits with support administrators each being paid around $100K per year at taxpayer expense, regardless of whether their students receive educational benefits or not.

So, how does that relate to fascism? And why is it such an inflammatory word when it simply describes a frame of thought?

My theory is that either the people who find the terms “fascist” and “fascism” inflammatory are engaging in fascist behaviors and don’t want to be called out on them, or they don’t actually understand what fascism is and that they are actively engaged in it, thereby simply taking it as an insult. So, before we start talking about the fascists that have been employed in local government over the last 100 years, lets first arrive at an understanding of what these terms actually mean.

Before we can talk about what fascism is, we first need to talk about what our democracy is supposed to be. The most basic summary of American democracy is that it is a system governed by the rule of law, which is created by legislators elected to represent the interests of their constituents wherein the majority rules. Being ruled by laws of which no one is above, rather than a dictator or an authoritarian regime, is an essential element of a democracy.

Another essential element of a democracy is the belief that every person, regardless of what makes them unique, is afforded equal rights under the law. The fact that we need laws like the IDEA, Section 504, and the ADA make clear that, if left to their own devices, our public schools cannot be trusted to afford equal rights to their students with special needs. They have to be regulated or they can devolve into little fascist regimes of their own, depending on the communities in which they are located.

The last 29+ years of working in this field has convinced me that even those laws are not enough. Fascists who have been within the system since before these laws were passed made these laws necessary in the first place to ensure that democracy is afforded to every child in the public education system. One of the most historically significant pieces of litigation in IDEA history is PARC v. Pennsylvania, in which it was determined that denying children with disabilities equal access to education is unconstitutional.

The fact that our federal government has been kidnapping and locking up babies coming to our borders through the the legal asylum-seeking process with their parents speaks to the degree to which the rights of any child in this country are not honored in general, much less when children have disabilities. Recent feedback from the American Association of Pediatrics has described this conduct as institutionalized “child abuse.” The American Federation of Teachers has called this conduct “crimes against humanity” (see https://youtu.be/3lMhuv3EXLI).

A government that disregards child welfare at all, much less to this degree is monstrous, hence today’s discussion of fascism.

fascism

[ˈfaSHˌizəm]

NOUN

fascism (noun)

an authoritarian and nationalistic right-wing system of government and social organization.

synonyms:

authoritarianism · totalitarianism · dictatorship · despotism · autocracy · absolute rule · Nazism · rightism · militarism · nationalism · xenophobia · racism · anti-Semitism · chauvinism · jingoism · isolationism · neo-fascism · neo-Nazism · corporativism · corporatism · Hitlerism · Francoism · Falangism

antonyms:

democracy · liberalism

Source: https://www.bing.com/search?q=fascism

So, basically, anything undemocratic is fascism. Denying children with disabilities equal access to education has already been determined to be unconstitutional. If it’s unconstitutional, is undemocratic. If it’s undemocratic, it’s fascist. Ergo, denying children with disabilities equal access to education is fascist.

Nazis are fascists. They do not believe that all people have equal rights and individuals with disabilities top their list of people who don’t deserve to live, much less be given equal access to anything. All fascism includes biases against other humans on the bases of observable physical traits and/or behaviors.

In Hitler’s Germany, it was the medical community that turned its back on individuals with disabilities, using science without ethics to justify mass killings and inhumane experimentation that were legitimized as “medical procedures.” After Hitler purged the country of somewhere between 6,000 and 7,000 Jewish doctors, more than 7% of all remaining German medical doctors joined the Nazi party, a much higher percentage than in the general population at that time. By 1942, more than half of Germany’s medical doctors and professionals with PhDs in related fields had joined the Nazi party.

Doctors working for Hitler’s Nazi State rather than patient welfare then embarked upon many of the most unethical human experiments conducted in modern history. Using Mendelian genetics to guide their decision-making processes, they saw extermination as the correct solution for developmental disabilities like Autism and Down’s Syndrome, which they regarded as genetic defects. This abandonment of the Hippocratic Oath to do no harm facilitated the Holocaust.

Murder and dismemberment in the name of science were visited upon every class of individuals captured by the Nazis, including people with disabilities, during the Holocaust. At the time, there were no international laws governing the behaviors of doctors. After the war, following the Nuremberg Trials, the Nuremberg Code was created in 1947, which established a set of research ethics for human experimentation.

In the early 1970s, when the special education and related civil rights laws were created, these ethical standards had long been established as a matter of law, but not necessarily common practice. The concept clearly did not generalize from the medical community to the education community, and much hell has been raised by school district officials and their lawyers about public education agencies not being liable for educational malpractice.

In my opinion, educational malpractice should be a criminal offense, complete with jail time and fines. Acts of unconstitutional conduct carried out under the color of public office cannot be tolerated in our democracy, whether we’re talking about extrajudicial killings by police or denials of a Free and Appropriate Public Education (FAPE) as a result of malice and/or neglect.

These laws only became necessary, and were finally enacted in the 1970s, because the intrinsic educational and civil rights of children with disabilities were being denied all over the United States. Professional ethical standards alone were not enough to protect students with special needs. Just as with the Nazi doctors and the Nuremberg Code, laws had to be created after the fact to hold people accountable for their unethical treatment of individuals with disabilities, including school-aged children, here in the United States.

The laws that protect students with disabilities have always been difficult to enforce. In no small part, this is because the fascists already employed within the public education system who viewed children with disabilities as second class citizens continued to undermine these laws from within their public education agencies after these laws passed.

As a more visible example of what I’m talking about, consider one of the most famous “Karens” in our social awareness, Kim Davis of Broward County, Kentucky. While she got elected to serve the public, taking an oath to abide by the rule of law and fully knowing that the Constitution requires a separation of church and state, she refused to issue marriage licenses to same-sex couples following the landmark federal lawsuit Obergefell v. Hodges, because her religious beliefs require her to engage in discrimination on the basis of sexual orientation.

This is fascism. She denied equal Constitutional rights under the law, refused to abide by the rule of law, and abandoned the separation of church and state in favor of her religious beliefs, which clearly do not align with the Constitution or democracy in general. She then claimed that she was being persecuted for her religion when she was put in jail for refusing to do her government job according to the rule of law.

This kind of behavior has been going on since the laws that protect children with disabilities were passed in the 1970s through to today. And, now, we have the consequences of this pandemic impacting an already unconstitutionally dysfunctional system and exposing all of its flaws for the whole world to see.

The thing about hard times is it quickly reveals who the fascists are. They are the ones advocating for a return to the previous status quo in which they were the beneficiaries of inequities while actively denying the existence of the obvious inequities in our publicly funded systems.

It has become the norm that agencies created by our democratic rule of law and funded with taxpayer dollars routinely violate those laws and misappropriate those dollars at the expense of the very constituents these agencies were created and funded by the taxpayers to serve. This has to stop or democracy is truly dead in this country.

Such is often the case in special education, just as a matter of routine. But, now this pandemic has really shown everyone’s true colors and there is little that is beautiful to behold. Just as peaceful protests against police brutality are being met with more police brutality, parents advocating for remedies to address their children’s special needs are being met with more frequent and egregious violations now that the circumstances have changed in response to the pandemic.

Clearly, public safety is of paramount importance and I will never dispute that plain fact. But, public safety does not require the end of democracy, and I’m not talking about masks. Don’t be an idiot; wash your hands, wear a damn mask, and socially distance yourself from other people.

Public safety is equal in importance to the constitutional rights of children with disabilities, not greater. These children have a protected legal right to equal access to public education. Further, special education students have a protected right to individualized educational programs designed and delivered according to the peer-reviewed research (34 CFR Sec. 300.320(a)(4)).

Local government agencies performing according to their legal mandates is democracy in action. This pandemic is not so apocalyptical that certain classes of individuals suddenly cease to have legally protected rights. Fascism denies their rights, not a virus. Local education agencies refusing to perform according to their legal mandates is fascism in action.

Further, as I’ve previously reported here, none of the applicable federal laws have been waived as a result of the pandemic. States and local governments do not have the legal authority to waive the federal requirements; they can only describe with State law how the federal laws will be implemented within the State, and local education agencies can, at most, create policies about how they will individually comply with the State’s implementation requirements of the federal regulations.

No local school district has the legal authority to refuse to abide by the laws, particularly those that regulate its purpose and existence. Nothing could be more undemocratic – more fascist – than that.

And, yet, here we are with our most vulnerable children languishing and regressing developmentally with every passing moment because a bunch of “tax-fattened hyenas,” to quote the great Berke Breathed, saw fit to use the pandemic as an excuse to not expend public dollars on the members of the public for whom those dollars were intended, while continuing to collect six-figure annual salaries in exchange for nothing. This isn’t just a civil rights issue. Just like police reform, it’s a taxpayer issue.

What this pandemic has done, among other things, is expose every crack in every system throughout all our systems of governance. And, those cracks are the consequences of systemic non-compliance with regulatory mandates, as well as failures of those mandates to adequately describe courses of action that prevent non-compliance.

There is no proactive oversight of local education agency compliance with special education and related civil rights law; the burden falls to the shoulders of largely uninformed and/or unempowered parents to file complaints or litigate in order for the law to be enforced, which means it usually is not. It’s a matter of “When the cat is away, the mice will play.”

Without proactive oversight and enforcement, public agencies are adrift at sea, inventing their own ways of doing things while often unaware of their legal obligations. There is no real quality control in special education. There’s just school district lawyers who jump in after the train has already wrecked to argue that it really didn’t for ridiculous dollars per hour at taxpayer expense.

It’s one thing to point this stuff out. It’s another thing to do something about it. My thought process is that the IDEA is overdue for reauthorization. Presuming democracy is preserved with the upcoming election and we haven’t descended into dictatorship, there is going to be a lot of public agency and legal reform coming down the pike for the next 10 years, at least.

Historians, anthropologists, sociologists, and psychologists will all be looking at the last four years and what led up to the current state of affairs in our nation under a microscope for the next 100 years, at least. The data they will be generating will inform vast improvements to our social systems and create systems for ongoing improvement as our society evolves and encounters new challenges, so long as the rest of us make sure that happens.

Right now, one of the most powerful things that parents of children with special needs can do is vote for the candidates they believe will take action to make sure that our publicly funded government agencies actually perform according to the regulatory requirements and achieve the purposes for which they exist, including the application of valid science to the delivery of services intended to benefit the public good. Maybe then we can finally become the democracy we’re supposed to be.

April 30, 2020May 1, 2020

Get to Know Our YouTube & Patreon Channels

In keeping with the times and the improvements in social media options that have come along with them, KPS4Parents has launched its own YouTube channel with a playlist specifically devoted to Quick-Fix videos that explain simple but important special education-related procedures, as well as broad overarching explanations of special education-related concerns.

These videos first launch on our Quick-Fix Video Archive on Patreon, ad-free, and are released two weeks later on YouTube for free (but with ads) for the next 30 days. Once they expire off of YouTube, the live on for so long as they remain timely and relevant on our Quick-Fix Video Archive on Patreon.

In addition to archiving our Quick-Fix videos on Patreon, we also offer another another tier that is driven by user input. Our Ask Anne tier is like an old-school advice column in which users submit their special education-related questions using our online form and our CEO, Anne Zachry, selects the best questions and answers them in each video.

Broad topics that are briefly addressed by our Quick-Fix Videos are further explored in more detail on The Nexus of Special Education Science & Law, our exclusive, advertiser free patron-supported video channel. The Nexus provides in-depth explorations of issues that involved inextricably intertwined matters of science and law, as they relate to the design and delivery of individualized education programs (IEPs) for public education students who are eligible for special education.

Our Patreon channel is supported by subscribers. This allows it to remain ad-free.

You can access our Quick-Fix videos right away on our Patreon channel and use them as tools to inform your own advocacy for so long as you remain a subscriber, or wait for them to come out for free on YouTube, albeit with ads, and have access to them for at least 30 days before they expire off of YouTube.

Our Ask Anne program and The Nexus of Special Education Science & Law are both exclusively on Patreon. These videos take more time and resources to produce and would not be something we could continue to do without our charitable donors and patrons.

You can donate to us by clicking on the donation button on this page. To subscribe to any of our Patreon channels, go to https://patreon.com/KPS4Parents.

April 3, 2020April 3, 2020

USDOE’s COVID-19 Special Ed Guidance to State & Local Ed Agencies

The United States Department of Education (USDOE) has issued guidance to state and local education agencies regarding the implementation of IEPs and the provision of a FAPE during the current COVID-19 pandemic and resulting quarantines.

Click here to download the PDF.

The PDF includes links to other important resources, including the CDC’s guidance to schools regarding safety protocols. Much of the guidance provided by USDOE in its PDF mirrors what we’ve been saying all along.

March 31, 2020March 31, 2020

Special Education Still Has to Be Individualized During Quarantine

During these unprecedented times of both urgency and delay, I’m finding that the ways in which I share relevant information with our audiences depends on the nature of the information that needs to be shared. Nuanced issues in which science and law become inextricably intertwined and live on as continuing issues, whether we’re in quarantine or not, remain appropriate for our Patreon patron-supported video channel, The Nexus of Special Education Science and Law, while time-sensitive updates and guidance to our audiences as to how to respond to various developments as they happen are more appropriate for our blog and corresponding podcast, Making Special Education Actually Work.

The reality is that producing the videos are way more involved than producing blog posts and podcasts. If we’re going to invest our limited resources into making a video, it has to address an issue that will remain an issue for some time to come and live a long and purposeful life before having to be replaced with a more current version. This is why our most involved video productions are only for our patrons on Patreon.

That’s fine for what it is. It’s highly technical stuff for a highly technical audience. Similarly, we have a podcast specifically for serious lay advocates to build their representation skills, but that is again highly specialized for a specific audience and patron-supported by its paying subscribers.

For information that is too time-sensitive to take days to be made into a decent video around my busy caseload and needs immediate attention from all our audience members for the sake of the general good, our regular blog posts and podcasts through Making Special Education Actually Work are much faster methods of getting the word out, and a great deal of that content is free. So, with all that in mind, today I find it necessary to use Making Special Education Actually Work serve as our most immediate method of getting the following information to the front lines as soon as possible. Some of my worst fears are being realized across my caseload and, presumably, across the country.

It’s necessary for me to remind everybody that special education is individualized to the unique needs of each student. Now, suddenly, hundreds of thousands of special education students have experienced radical changes to their educational programs that each require an individualized response. How they continue to make progress towards their IEP goals while sheltering in place must be individualized just like all the rest of their respective IEPs.

The scope of this issue is unprecedented. Suddenly, every kid in America on an IEP in a quarantined community needs an IEP meeting to modify their respective IEPs to fit the current circumstances. Conforming to the IEP timelines under the circumstances is going to be incredibly challenging for school districts and they may end up engaging in the educational equivalent of triage, figuring out who is at most risk of regression and allocating resources to those students first before moving on to the kids who are likely to recover lost educational benefits by way of compensatory services later on and aren’t at risk for as great an amount of regression as those that require the most immediate attention.

Chances are, the kids with the most costly and involved programs are going to be the ones most at risk of regression if their services get interrupted, so starting with those students is probably the most logical place to begin. These are also the cases in which local education agencies are most at risk of doing something that denies a Free and Appropriate Public Education (FAPE), simply because the needs of our most severely impacted students are so significant and any small exclusion can create significant harm, even if accidental.

The most severely impacted students tend to be a relatively small number and figuring out how to deliver individualized services to them that can be reasonably calculated to achieve their respective IEP goals can be resolved first, when the most flexibility among the available resources is necessary. Then, students with less intensive needs can follow, stepping down to the students with the least demanding special education and related service needs at the end of the process.

Trying to shoe-horn a student with severe special needs into a solution using whatever is left over after everyone else has picked the resources clean is discriminatory. Solving the hardest problems first also creates conduits through which other solutions can be implemented, making it easier to solve the more numerous less challenging tasks, and makes them even less challenging to solve. Local education agency dollars previously spent on facilities may need to be reinvested in technology, additional personnel, and plenty of Personal Protective Equipment (PPE), to keep up with the federal mandates to provide a FAPE to every eligible student.

How much leniency the various triers of fact will be willing to give to local education agencies in special education due process hearings and appeals over the two years that follow this pandemic will depend on the unique factors of each situation, including the reasons for any delays that occurred, as well as the unique needs of the student for which individualized responses were necessary but for which resources were not readily available. Regardless of how much leniency is reasonable under the circumstances, the expectation is still that a FAPE will be provided to each eligible student, in accordance with both Section 504 of the Rehabilitation Act, and the Individuals with Disabilities Education Act (IDEA).

Congress did not build any specific contingency plans into the IDEA or Section 504 with respect to implementation during times of emergency, and certainly none that make it acceptable to suspend the protections offered by either Act. There is nothing that says these civil rights laws, or any other civil rights laws that protect people with disabilities, cease to be in force under any circumstances. They are in force at all times, even times such as now.

Anything less is humanity devolving into the Lord of the Flies, and there is absolutely no need for that, but advocates for people with disabilities are having to argue for equality in health care, right now, which is reprehensible! At this moment, the shortages of medical supplies in the areas most severely impacted by COVID-19 are forcing health care providers to decide who lives and who dies, just like in a war zone. The elderly and disabled are the least likely to receive life-saving care, at this point, and it’s unacceptable that our health care providers are being put in the position to have to think this way. Whether or not a person has autism should not determine whether or not they receive life-saving care.

We’re going to lose tens to hundreds of thousands of Americans unnecessarily because of the poor federal response to this situation since it first began. Disability and/or a complex medical history doesn’t automatically make a person unemployed or unemployable. We are losing great minds and true talents to this disease among younger individuals who were compromised by pre-existing conditions. Further, we’re losing people of all ages who had no pre-existing conditions at all, making the unfair distribution of resources in favor of those without disabilities even less justified.

The fact that we are having to actively enforce civil rights law through litigation and formal complaints with respect to access to healthcare during a global pandemic is disheartening. It means that, now more than ever, we can’t neglect the other areas in which civil rights violations against people with disabilities are also occurring, which includes special education. There has to be a unified voice on behalf of individuals with disabilities across all domains to stand firm on the civil rights protections that are already on the books and expect everybody else to also play by the rules. This is no time for anarchy.

With respect to individualized instruction and specialist services, I have to point out that very few students with significant special needs are going to benefit from online instruction. As medical supply production starts to ramp up, now that various industries are retooling their assembly lines to produce enough masks, gowns, latex gloves, etc., to keep all necessary personnel adequately protected and safe, it’s going to have to be accepted as fact that some students simply require in-person services in order to receive educational benefits under the current circumstances, and the staffs who need to provide such in-person services will require adequate protection to stay well and prevent the spread of disease.

Given the immediate shortage of PPE, it’s understandable that this time right now can probably best be used to lay the administrative foundation for how in-person special education services will be deployed once the protective equipment becomes available. But, it also means that many students will be due compensatory service minutes for any time lost, particularly if they are already showing signs of regression by the time in-person services finally start.

Given that states are deciding to close down their schools through the end of the Summer 2020 break and start again in the Fall of 2020, this is going to be a long-term temporary period of interim special education and related services that will have to be tailored to each individual student affected, just as it was supposed to have been done for each student in their normal school settings. If school districts move quickly and strategically enough, they can get something in place and make up lost service minutes before way too many compensatory service minutes are owed to each student.

The good news is that the only things that should have to be changed, provided the goals already tackle every area of unique student learning need and are written in a measurable manner, are services and placement. The goals shouldn’t change. The learning outcomes that the IEP has been pursuing shouldn’t suddenly become inappropriate because of a forced change in placement in response to a national emergency. The quarantine has nothing to do with whether a student’s IEP goals target appropriate learning outcomes.

If you are a parent doing an IEP meeting (by phone or video conference, please!) and somebody from the school suggests eliminating a goal or putting it on hold, don’t go for it. Your child didn’t suddenly experience a reduction in the need to learn what that goal targeted. If they’re trying to get rid of it, it’s because they are struggling to come up with an inexpensive way to teach or provide therapy to it and they don’t want to have to pay what it’s going to cost to legitimately pursue it, which is not cool. It’s also totally unlawful.

It is my sincere hope that public education agencies will respond to the needs of their special education students timely enough to prevent regression and the need for compensatory services as much as possible. The faster and smarter they move on this, the less responsible for compensatory education they will be. If the education agencies go straight to each child’s IEP goals and ask, “Given the limitations with which we are currently faced, what services are going to have to be delivered either in home or in some other 1:1 instructional situation in order to still see these goals met?” they’ll cut to the chase and be as efficient as anyone can be under the circumstances.

IEP teams don’t have to start over at the beginning. They just have to go back to the point where they are trying to decide what services are necessary to meet the goals and how they can be delivered in the placement options currently available. When this conversation was last had for each student on an IEP, the placement options were more plentiful, so that conversation fit what was then the context. But, the context has now changed, so IEP teams need to return to the services and placement portion of the IEP process to address the fact that placement options are now very limited and a fair amount of creativity is going to be needed to work around the limitations that are now imposed by this quarantine.

The current situation also requires school nurses to come up with health care plans to go into each student’s IEP and tailor them on a case-by-case basis for students with unique needs that may require hands-on support for medical equipment, physical positioning, hand-over-hand instruction, and other close contact instructional methods and support services for which PPE will be critically necessary. It is important to include guidance to anyone having to implement an IEP in person as to how to conform to appropriate safety practices in the health care plan section of each special education student’s IEP.

Now is the time for strategic thinking. It’s all hands on deck for those of us who have critical thinking and problem-solving skills, and some of us are way better at things like that than others. I gladly defer to those who can understand things that are way beyond me, like sophisticated mathematical models. We need to defer to those who come up with the most effective and efficient methods of meeting public agency obligations regardless of their titles or training. We need to be working collaboratively rather than competitively. All of us who are trying to make public education work, regardless of the roles we each individually play, have to keep the timbers of the system from being rent apart, right now.

I know one of my students is, thankfully, already receiving in-home instruction from a credentialed special education teacher supported by a Board Certified Behavior Analyst (BCBA) for three hours a day, using safety protocols as per the Centers for Disease Control (CDC). However, I also know another one of my students is sitting at home having one meltdown after another while her mother pointlessly tries to access Google Classroom in the absence of any special education instructional or behavioral support services.

These students need specialist supports and services from experts with advanced degrees. Almost no parents knows how to deliver this kind of highly specialized instruction. When it comes to specialist-provided related services, like speech/language services or occupational therapy (OT), parents are even more at a loss.

The educational needs of most special education students, because of their increased risk of regression during lengthy breaks from effective instruction, are as significant to their development as is their medical health. Particularly when you are talking about students with developmental disabilities, disruptions in routines and services are likely to lead to educational losses that will take time to recoup; the longer the period of disruption, the longer the period of recoupment.

Recoupment comes at the cost of new learning. Time spent relearning lost knowledge is time not spent learning new information. Regression and recoupment always mean a student falling even more behind same-grade peers, even after lost learning is recovered. Further, developmental windows of childhood development narrow and close as time goes on. When children miss developmental milestones because they are kept in deprived environments, it stunts their developmental growth and it is very difficult to overcome the knowledge deficits later in life.

There are adults everywhere today who are maxed out at Concrete Operations, according to Piaget’s Stages of Cognitive Development, and that’s enough to get them by for the most part, but they don’t understand big picture concepts and tend to subscribe to magical thinking when it comes to things they can’t deduce from direct observation of physical objects and phenomenon.

Adults like these may be very accomplished at things that involve the manipulation of tangible items, such as using tools to make and/or repair things, or representations of tangible items, such as visual computer models. But, try to get them to explain the differences between democracy and fascism, or love and need, and they can’t do it. These are abstract concepts that require a fully functional pre-frontal cortex, which they don’t have.

And, that is the kind of thing that has me worried about all the students doing some kind of home school thing during this quarantine. We have inexpert parents, the older bunch of which were raised during a time prior to the Common Core and without the types of cognitive stimulation that come with it.

I’m middle aged and I can remember that, in my early adult years, adult literacy was still a big deal. Illiterate but employed adults bemoaned the idea of employers requiring a high school diploma for a job like carpenter, cook, truck driver, or factory worker, which were the types of jobs that large numbers of Americans were pursuing and occupying at the time. A high school drop out could make a truly comfortable living plucking chickens at the local chicken plant, back when I was a teenager and young adult, especially if working the graveyard shift. That was $20 per hour back in the late 1980s.

So, when I say that there are parents out there who are ill-equipped to home school their children right now, I’m not just whistlin’ “Dixie.” There are still a fair number of people my age or close to it who grew up surrounded by adults with a gross under-appreciation of the value of education and now have school age kids or grand-kids for whom they are responsible. They may appreciate the value of a good education, but since they never got one, they don’t have the knowledge necessary to home-school their children.

And, that doesn’t even begin to take into account all of the dysfunctional parents with actively manifesting mental health issues, which can include drug and alcohol addiction, who are now stuck at home with their poor kids and expected to teach them skills they never mastered, themselves. How many of them are actively using in front of their kids to deal with the stress of this situation? How many of them have lost income because of the current circumstances, can’t afford to re-up, and are now experiencing withdrawals while stuck at home with their kids?

You add special needs on top of an already weak family system and then put that family unit through a quarantine made necessary by a global pandemic, and something bad is bound to happen. For a lot of these families, their kids going to school every day is good for everybody involved. It gets the kids away from toxic adult behaviors and around more appropriate role models during the majority of their waking hours, while giving their parents a break that can facilitate peaceable interactions later when the whole family unit is together. For those kids from difficult situations at home who also have special needs, school-based specialist services and individualized instruction can be their lifeline to a better future and they need that lifeline now more than ever.

To the degree parents can be effective parts of an IEP implementation team under the current circumstances, parent counseling and training as related services are going to become increasingly necessary. Whether it’s done online, in person, or a hybrid delivery model of both, the parent has to be trained on how to implement those portions of the IEP for which he/she can assume responsibility during quarantine, which is an IEP team decision. 34 CFR Sec. 300.34 lists parent counseling and training as a related service that can be provided by an IEP.

Qualified personnel will have to make up the balance of the IEP services that cannot be delivered by a parent in consultation with special education and related service personnel. It is not educationally appropriate to delegate 100% of the implementation of an IEP to an inexpert parent. Specialist personnel are still required in some capacity and that has to be determined on a student-by-student basis, just as with any other aspect of an IEP.

While the IDEA does not include a contingency plan specifically for pandemics, it does have rules that provide structure as to the outcomes public agencies are expected to achieve and the mechanisms by which they can be achieved, even as they adapt to ever-changing situations. Public education agencies are just having to rely on these rules and tools to respond in a way never before anticipated. The fact that we can keep these institutions going under the current circumstances speaks to the construction of the enforceable laws, the tenacity of the American people, and the collective belief of our majority in preserving our institutions.

This is not the worst that things could be, as bad as it is for some people, right now. The majority of us will survive the virus, though those of us who survive are likely to lose people we know before it’s over. It’s up to those of us who are not willing to descend into anarchy to continue enforcing the laws that make us who we are, even under these distressing circumstances. We’re needed now more than ever. Human lives, whether they are disabled or not, are worth more than money, and we need to make sure that message remains resoundingly clear in the times ahead to come.

March 3, 2020March 3, 2020

Referring Your Child for Special Education

CREATE & DOWNLOAD YOUR OWN PARENT REFERRAL LETTER

The decision to refer a child for assessment to determine if they qualify for special education isn’t one to take lightly. Do you err on the side of caution and assess, even if only to rule out the possibility of a special education need, or hope whatever is causing the child problems in school will somehow work itself out?

For a variety of reasons, it is often the case that general education staffs in a public school are hesitant to refer a child for special education evaluation, or don’t even know that they are required to do so if a child presents with signs of suspected disability. Many don’t know how to distinguish the signs of possible disabilities from other factors, so they don’t even realize what they are really looking at.

The implementing regulations of the Individuals with Disabilities Education Act (IDEA) make clear that parents also have the authority to refer their children for initial special education evaluations. Referral is the first step to determining if a child is eligible for special education and, if so, what an individualized educational program (IEP) will look like for that child.

Referral triggers an initial evaluation that is supposed to be conducted in all areas of suspected disability and unique student need. That evaluation is supposed to be sufficiently comprehensive to inform the IEP as to the student’s potential eligibility for special education and the student’s unique learning needs.

There are two prongs that have to be satisfied in order for a student to become eligible for special education: 1) the student has to have a disability, and 2) the disability has to create a negative educational impact of some kind that makes specialized instruction necessary that wouldn’t otherwise be provided to a general education student. It’s possible to meet the first prong, but not the second one.

If it turns out that the student has a disability, but not to such an extreme degree that specialized instruction becomes necessary, the student may still be eligible for accommodations pursuant to Section 504 of the Rehabilitation Act and the Americans with Disabilities Act (ADA). Unless the instruction has to be modified or supplemented in some way in order for the student to access and benefit from the instruction, an IEP may be overkill.

There are those kids who need just a smidge of help, not a full-blown program of individualized instruction. There are those kids who just need a smidge of special education. Some kids need more, and yet others need a whole lot more. What each kid needs can only be determined by competent, comprehensive-enough assessments.

The federal regulations leave the door open for a local education agency (LEA) to deny a parent referral for initial evaluation, but the denial must conform to the Prior Written Notice (PWN) requirements described by the federal regulations. If the parent referral is declined, the PWN is required to explain why, and it better be a really good reason or the LEA can set itself up for a lawsuit.

States have the authority to add protections for students that the IDEA does not require, however. For example, in California, State law simply states that an assessment plan must be remitted to the parents whenever a referral is received. There is no caveat that says, “Unless it’s from the parents, in which case the LEA can decline it with a PWN.” There is no option for declination. It’s a black-and-white matter of, “When a referral comes in, an assessment plan goes out within 15 calendar days.” California law lists parents as the first party authorized to make referrals for special education assessments.

Every school year, families totally new to the special education process find themselves bewildered and dazed as they try to navigate the system. It’s a journey unto itself just to come to the conclusion that special education may even be necessary, but it’s only the beginning.

CREATE & DOWNLOAD YOUR OWN PARENT REFERRAL LETTER

Federal law mandates that each State require its public schools to have a system of “child find,” which must actively seek out, identify, and refer those student who may need special education. But, I have shouldered my fair share of “child find” cases over the years where kids went on failing year after year but being administratively passed from grade to grade without ever being referred for special education, only to prove to have disabilities and be due compensatory education.

Parents and taxpayers cannot rely on “child find” to help the kids who need special education. The burden often falls on the shoulders of parents who start doing research and discover they can refer their children for assessment, but then it becomes about learning how to do it, and then learning about what comes after that. It’s involved and exhausting.

So, we thought that anything we can do to streamline the process and help parents advocate more effectively and efficiently would be a valuable thing to add to the growing body of online resources out there to help families of children with special needs. Our first tiny contribution along these lines is a free tool for parents to create a referral letter for their children. Now that we have the means to create tools like this, we’ll be adding more in the future.

Honestly, it was exciting to find out that our site would support this kind of functionality without a whole lot of work. This opens up a lot of doors for us to help a lot of people who we otherwise wouldn’t be able to serve.

The referral letter we created is basic, sticks to language that is legally applicable throughout the United States, and flexible enough to account for each student’s unique circumstance. We will be creating additional customizable downloads like this for other special education situations in the future. We’ll announce them here, though the blog and our social media, when we add them to our site.

Once you’ve created and downloaded the PDF, just print and sign it. Then you can remit it to your LEA by some method that give you proof of delivery. We like Certified mail – you get a tracking number so you don’t need a return receipt and it’s the least expensive method we’ve found for getting proof of delivery on correspondence that trigger timelines or are otherwise important enough to need to remember when they were received.

Be sure to keep a copy of the signed version for your records, along with the proof of delivery. If mailing it Certified isn’t convenient, you can also print and sign it, then make a copy of the signed letter, and walk both copies into your child’s school. Have the person at the counter stamp yours received with the date and, if possible, their initials, and leave the original with the person at the counter. You can also deliver it this way to the LEA’s administrative offices.

So long as you have proof of when it was received, you’ve preserved your evidence. We wish you the best in your endeavors to advocate for your child and hope this tool proves to be useful to you.

CREATE & DOWNLOAD YOUR OWN PARENT REFERRAL LETTER

January 12, 2020February 17, 2020

Positive Behavioral Interventions and Supports in Special Education

I wasn’t going to write on this topic quite yet, but I’m working on a case right now that has me upset over public agency mismanagement and misconduct that has resulted in the physical abuse of our nonverbal student with severe special needs and God only knows how many other students within this public education agency. It reminded me of a lot of things, including our organization’s founding and the protective purpose KPS4Parents has always served as student and family advocates.

I maintain my list of topics to write about as draft posts on the backend of our site, sometimes just as a title, sometimes with a brief description, as the ideas come to me and, when I go to write, I have them more or less organized in my head in the order I want to write them. But, sometimes, like now, something happens that makes one of the topics leap up to the top of the list.

I am currently providing paralegal support to an attorney on a case in which our student has gone for years without behavioral interventions in her IEPs after previous years of successfully benefitting from such IEP interventions. She has regressed to the point where she was behaviorally 10 years ago, before receiving any appropriate behavioral interventions at all.

The educational neglect in this case rises to the level of physical abuse. The school district’s bumbling ineptitude at the expense of our student’s welfare has been nothing short of galling. Our student is now sitting safely at home waiting for her case to be either adjudicated or settled but without the benefit of any instruction or related services until it’s resolved.

Which takes me back to the founding of KPS4Parents and the event that was the last straw that compelled our founder, Nyanza Cook, to start KPS4Parents. In 2002, I was a lay advocate in private practice helping families of students with special needs, and Nyanza hired me to help her with her step-son’s case, which is a story unto itself for another day. It’s how we met and these were the early days. It was the context we were in at the time.

Nyanza hails from Killeen, Texas near Fort Hood, the largest U.S. Army base in the continental United States. While diversity has been tolerated, if not embraced, within the U.S. military in many instances, outside of the military base in the rural areas of Texas, diversity is not so much appreciated. Killeen Independent School District (KISD) has historically operated separate schools for students with “behavioral problems,” most of whom have been African-American or Latino. The quality of special education in KISD has been historically abysmal, particularly for students of color, which is how it’s misconduct led to our organization’s founding.

In 2002, a young man named Cedric Napoleon was attending a Special Day Class (SDC) at one of KISD’s special schools for students with “behavioral problems.” Cedric was a foster child living with his foster mother, Toni Price. He had experienced severe trauma in early childhood, including deprivation of food for days that led to a food hoarding behavior and other behavioral challenges. He was in special education under the Emotional Disturbance (ED) category and his SDC was supposed to be configured specifically for students with ED issues.

Also in the classroom at the time was Nyanza’s nephew. On one fateful day in March 2002, Cedric was suffocated to death by his classroom teacher during a prone restraint. He was not being violent towards others, trying to run out of the classroom, or hurting himself when she restrained him. He was being non-compliant and she took it as an affront to her authority. She pinned him face down on the floor out of hostile rage and when he said, “I can’t breathe,” she replied, “If you can speak, you can breathe.” He expired shortly thereafter as Nyanza’s nephew and his classmates watched on in horror.

That night, Nyanza got a hysterical phone call from family members gathered at her parents’ house in Killeen. They knew she was talking about starting a special education advocacy organization and had been advocating for her step-son in California. They put her nephew on the phone with her and all he could say in a dazed voice was, “They killed him, Auntie. They killed him.” He was terrified to return to school after that, and never did. His life has been one of despair and tragedy ever since.

The day Nyanza’s nephew witnessed Cedric’s murder in his classroom by his teacher, he was already there because he had his own ED issues. To add the trauma of witnessing Cedric’s murder to his own pre-existing special education needs, in the place that was supposed to help him overcome his pre-existing special education needs and at the hands of the person who was supposed to help him, was just too much.

More than one life was destroyed that day. Cedric’s classmates witnessed his murder in that ED SDC and were affected for life in ways that could only lead to more suffering for them. The District’s students most vulnerable to trauma were severely traumatized by one of the most grotesque abuses of their trust possible. They witnessed their teacher kill a classmate for daring to defy her authority.

Nyanza called me that night as soon as she got off the phone with her family and told me what they had told her. She and I agreed that when teachers were murdering our babies in plain sight of our other babies (we have an it-takes-a-village mentality, which makes all babies our babies), we couldn’t stand idly by. The death of Cedric Napoleon was the final straw that compelled Nyanza to go through with starting our organization, she asked for my help, I said “Yes!” without hesitation, and we had our paperwork in order by June of 2003.

In Cedric’s case, to make matters worse, once his life had ended, so had his foster mother’s legal authority to act on his behalf as a parent. She could not pursue justice for him because she lacked the legal authority and the foster care system did little to nothing about it. Cedric’s killer was never tried for murder. She was never subject to any disciplinary action by the public education system in Texas.

On May 19, 2009, Toni Price finally got her chance to do something about what had happened to Cedric. The Education and Labor Committee of the U.S. House of Representatives was being presented with a report of the findings of an investigation the Committee had previously ordered to have done by the Government Accountability Office (GAO) regarding the use of seclusion and restraints in public schools. There had been a fairly recent similar study conducted of private schools that produced shocking and horrifying disclosures as bad as Cedric’s or worse, and the Committee had wanted to know if these problems were also pervasive in our nation’s public schools.

The GAO report started circulating among those in my professional circle online shortly after the hearings and ultimately found its way to me. I remember reading through it and getting to the section describing what happened to Cedric and going, “Wait a minute. I’ve heard this story before … OMG! This is the kid from Nyanza’s nephew’s class!” I immediately forwarded the report to Nyanza and either called or texted her to follow up. At some point we ended up on the phone and she was flabbergasted to see Cedric’s story spelled out in the report. It was the same student she had told me about back in 2002.

In the course of conducting its investigation, out of all of the cases of problems with seclusions and restraints that GAO examined, Cedric’s stood out as particularly horrifying, in no small part due to the fact that his killer had never faced any serious consequences for killing him at the time of the investigation. The investigators searched for this teacher when their investigation revealed that she had faced no consequences and, shortly before the date of their presentation to the Committee, found that she had relocated to Virginia and was running an SDC on a public school campus that was only a 45-minute drive away from where the Committee was convening to hear the presentation of their report.

There was no effort to conceal the outrage that several Committee members expressed over the fact that this woman had not only killed an ED student in the ED SDC where she was supposed to be helping him get better, but that she faced no consequences and was able to get credentialed in at least one other state because the fact that she had killed a student didn’t follow her on her record. They openly referred to Cedric’s death as a murder.

The Committee’s disgust is exposed during the hearing (click here for video of the full 2-hour hearing), and I share that disgust. It is disgusting; disgust is the only healthy response to what this woman did. Rep. Rob Andrews (1:22:22 – 1:28:16 of the hearing video), Rep. Lynn Woolsey (1:53:02 – 1:54:18 of the hearing video), and Rep. George Miller, Committee Chair (1:55:21 – 1:57:44 of the hearing video) had particularly candid things to say and there was bipartisan heartsickness over the whole thing.

The only reason Cedric’s killer was found was because of the GAO’s investigation. Had it not conducted it, a known killer would have been allowed to remain as a fox in a henhouse, circulating among the same types of individuals upon whom she had preyed before. Their parents had no idea they were sending their vulnerable children off to a child killer each school day. Even now, almost 11 years later, the thought still makes me shudder with horror.

The Committee’s take on the situation was influenced in no small part by the testimony of various witnesses produced by the investigators in support of its findings. Among those asked to testify was Toni Price, Cedric’s foster mother. Her testimony was compelling; even now, it still makes me cry.

Toni argued for a national, if not global, directory of teachers found guilty of child abuse for education agencies to use for screening teaching applicants, and she did so from the most informed position possible. She spoke as the primary caregiver of a child with mental health needs killed by the person entrusted to address them every day at school, but with no legal recourse to do anything about it, leaving advocating for that child and protecting others like him to no one. Only the fluke of a Congressional investigation at the right time on the right topic exposed what happened, and Toni took the opportunity to say what needed to be said.

Which brings me back to the topic of this post and podcast, which is the use of Positive Behavioral Interventions and Supports (PBIS) in special education. Subsequent to the May 2009 hearing, GAO began gathering additional information and the U.S. Department of Education began promulgating guidance and technical information regarding PBIS. In 2012, the U.S. Department of Education produced the Restraint and Seclusion Resource Document.

In February 2019, after 10 years of collecting data on the use of seclusion and restraints in our public schools, GAO produced another report and another hearing was held during which the last 10 years’ worth of data collected and analyzed were presented to the Committee. Witnesses gave testimony, provided additional evidence, and answered questions. You now can look up the CRDC data for your own school district on the CRDC site.

Shortly thereafter, the U.S. Department of Education announced an initiative to address the inappropriate use of seclusions and restraints in our public schools. Just this last December, four members of the U.S. House of Representatives proposed a bill, HR 5325, referred to as the “Ending Punitive, Unfair, School-based Harm that is Overt and Unresponsive to Trauma Act of 2019” or the “Ending PUSHOUT Act of 2019,” which seems like way too poor of a word choice for a name just to create an acronym, but the body of the bill still nonetheless prohibits seclusions and restraints and includes other regulations pertaining to behavioral interventions.

HR 5325 is still a bill pending before the Education and Labor Committee of the U.S. House of Representatives. It was introduced just last month, so obviously nothing has happened with it, yet. Congress has been a little busy lately and the last time the Committee tried to pass legislation to address seclusion and restraints in 2009, it passed in the House only to never see the light of day in the Senate. That’s likely to happen again, now, with our current configuration of Congress, but the effort still needs to be made.

What GAO reported in the most recent hearing was that there wasn’t enough data in, yet, regarding the efficacy of Education’s efforts to promulgate PBIS technical information and guidance among the public schools or the degree to which the schools that availed themselves of it found it beneficial. In controlled research situations in which implementation fidelity was maintained, PBIS was proven to work, but how well public schools actually implement it with success in the absence of researcher oversight and fidelity checking remains to be seen.

What seems to be the case, and the whole reason this issue is before the House Education and Labor Committee, again, is that there is an obvious need for federal oversight and regulation, here. There is a lack of consistency from state to state as to how behavioral interventions are to be implemented in schools. Some states have regulations regarding seclusions and restraints in schools and others do not. Even those states that have laws in place don’t provide for adequate enforcement of those laws.

The lack of built-in accountability has made it possible for horrible situations to happen. And, they continue to happen. The only way the public school system is held accountable in situations like these is when individual families take legal action. Hence, the case I’m now working on that has made these issues spring to life for me, once again, much to my deep disappointment.

Educator and support staff training, or a gross lack thereof, more specifically, is often at the heart of these cases. But, so is the lack of teacher accountability and the degree to which educators tend to cover up each other’s tracks, even if it means a child dies in the process.

The fear of talking usually goes to fear of losing their jobs, fear of reprisals from their co-workers, fear of being held accountable for the actions of others, fear of getting in trouble for the same thing for which someone else is getting in trouble because they’ve done it, too, and has to come with a tremendous amount of internal conflict. Only sociopaths could smoothly walk that rocky landscape without being troubled by the experience.

The willingness of school administrators to let something as horrible as student traumatization, physical injury, and/or death by the hands of teaching staff and aides in the learning environment get swept under the rug and hope nobody notices, if not actively seek to conceal it, is repugnant. There is a lack of professional integrity in the public education system that can reach sickening proportions, and these cases are examples.

So, I really don’t have an upbeat ending for this post and podcast. I’m pretty not okay with what I’m still seeing going on with respect to seclusion and restraints in public schools in California, which is supposed to be the most progressive state in the country. It’s particularly bad in rural communities far away from specialists and adequate facilities, particularly when those communities are mostly made up of low-income households.

In some cases, like the one I’m working on now, the student has experienced nothing short of absolute barbarism. It shouldn’t take people like me helping to hold the public education system accountable after the fact. The answer is prevention. In the absence of any guidance in the student’s IEPs as to how to address her behaviors, she was repeatedly secluded and restrained by teachers and aides who didn’t know what else to do.

This was all just up until a few weeks ago, which is why she’s now safely at home but without any instruction or related services until her attorney, in collaboration with me as his paralegal and the experts we’re bringing onto the team, can get this mess cleaned up. It just sickens my heart that after all the years that I’ve been doing this work – 29 years this coming June, mind you – this is where things are still at. In the most progressive state in the Union, we’re still secluding and restraining non-verbal students who are struggling to communicate their wants and needs. It puts bile in the back of my throat.

December 31, 2019February 17, 2020

How Parents Can Help Promote the Application of Peer-Reviewed Research to Special Education

Special education is heavily regulated to protect the rights of eligible students to individualized educational planning, but complying with the regulations is easier said than done. The operational design of most public schools is over 150 years old and based on the mass production mentality of a factory, having been created during the Industrial Revolution. By contrast, the applicable special education laws were first passed in the 1970s, accounting for only the last 1/3rd of the current American public education system’s history.

Trying to implement the individualized educational planning called for by special education law in an environment created for the purpose of mass instruction is like trying to build a custom piece of furniture on a moving assembly line. In the early days of special education, this meant removing students from the general education setting to special education classes, effectively choosing to build a custom piece of furniture in a specialized workshop rather than on the pre-existing assembly line.

The problem, however, is that pieces of furniture do not have civil rights. It’s one thing to segregate inanimate objects according to how they are constructed. It’s another thing to segregate human beings according to whether they need changes in how they are instructed due to disability.

Because special education students have legal protections against being segregated out of the general education setting simply for having a disability, integrating individualized educational planning into a mass instruction environment becomes that much more complicated for special education students who are educated with their general education peers for all or part of their school days. The complexities of individualizing educational programs for each student are seemingly infinite, given all of the relevant disability-specific considerations plus all of the ecological factors involved in each instructional setting.

However, science – specifically research conducted by educational psychologists and their colleagues – has been attempting to keep up with the demands created by various types of unique student needs, including disabilities of all kinds. While it all hasn’t been figured out for every situation by any stretch of the imagination, there is still a wealth of information from education research that never makes its way into the classroom, much less into individual IEPs.

That’s a problem because Title 34, Code of the Federal Regulations, Section 300.320(a)(4) mandates the application of peer-reviewed research to the design and delivery of special education on an individualized basis, unless it’s not practicable to do so. No one has yet defined what “practicable” actually means, so it’s still up for debate.

The history of how all this science ended up being codified within the implementing regulations of the Individuals with Disabilities Education Act (IDEA), has been summarized in our last blog post, “The Fundamental Flow of IEP Creation,” so I won’t repeat it here. You can review the impact of PARC v. Pennsylvania in that post to inform references to it, here.

The point is that the applicable science has always been written into any serious redress to the educational needs of students with disabilities after having been deprived educational benefits by the public school system. In PARC v. Pennsylvania, a psychologist with extensive experience working with children with intellectual disabilities and an attorney committed to representing the interests of children with intellectual disabilities were jointly appointed by the federal court to serve as special masters to oversee the implementation of appropriate interventions to students with intellectual disabilities in Pennsylvania’s public schools as part of the settlement that was negotiated between the parties. The settlement included federal court oversight by way of the court-appointed special masters.

The historical foundations of the requirements for measurable annual goals in IEPs pursuant to 34 CFR Sec. 300.320(a)(2) and the application of the peer-reviewed research to the delivery of special education as mentioned previously can be traced directly back to PARC v. Pennsylvania. There has never been a time when the law did not expect the delivery of special education to be informed by anything other than evidence-based practices developed from the peer-reviewed research.

From the moment the first laws were created to provide special education to all eligible children in the United States, science was built into its design. Federal Supreme Court case law has established that Congress expected procedural compliance with the IDEA to all but guarantee compliance with the substantive requirements of the law when it authored and passed what is now the IDEA. Specifically, the case law states, “…the Act’s emphasis on procedural safeguards demonstrates the legislative conviction that adequate compliance with prescribed procedures will in most cases assure much, if not all, of what Congress wished in the way of substantive content in an IEP.” (Board of Educ. v. Rowley, 458 U.S. 176 (1982))

Congress intended for the applicable science to guide the special education process for a number of good reasons. First, using science means using what everybody can agree actually works under a given set of unique circumstances, to the degree such is known. There is evidence – proof – that under the explicit conditions that were tested, a particular method of intervention works or doesn’t.

Because every special education student presents as a highly unique individual such that their learning needs do not conform to conventional instruction, they require highly individualized instruction that is tailored to each of them, respectively. There is no one-size-fits-all method of intervention proven to work in special education contexts. What is proven to work is writing up a unique program of instruction for each individual student. That is the evidence-based applicable science, that is the bottom line requirement of the applicable federal law, and this has been known and federally regulated since 1975.

This, therefore, begs the question as to why so much of special education is based on subjective opinions, ballpark estimations (often underestimations), and fad theories about learning rather than science. There’s been a lot of research into why the research isn’t being promulgated for use in public education and politics has a lot to do with it.

Applying the research means upgrading facilities, retraining teachers and their support staffs, buying new materials, and paying for more specialists. Further, it’s often necessary to purchase all of the research materials necessary to inform any kind of evidence-based program design and hire someone who knows how to translate the research into a data-driven educational program. For highly paid top agency administrators who get compensated on the basis of how much money they don’t spend rather than how many students they do get educated, applying the research means spending money, and that’s no way to get a raise in that kind of institutional culture.

Another concern of many public education agencies is accountability. When using evidence-based practices in the delivery of special education, one can’t ignore the body of research that supports that the data collection and analysis methods used in Applied Behavioral Analysis (ABA) are the most reliable methods of data collection and analysis used in any special education context (Drasgow, Yell, & Robinson, 2001; Kimball, 2002; Yell & Drasgow, 2000). The problem for some education agencies is that valid data collection means all their missteps will be captured by the data. If they aren’t actually implementing the IEP as written, the data will reflect that, exposing the agency to legal consequences.

People often mistake ABA for a treatment for autism, but this is not the case. It is true that behavioral interventions using ABA can be effective at addressing behavioral challenges with students who have autism, as well as any other human beings with behavioral challenges, but it can also be used as an instructional methodology and as a tool to determine if learning has occurred and, if so, how much. That is, it is excellent at measuring progress towards a clearly defined outcome, such as a measurable annual IEP goal.

The Antecedent-Behavior-Consequence (ABC) data collection methods used in ABA naturally lend themselves to measuring progress towards IEP goals. This is how it works: a stimulus (Antecedent) is presented to which the student responds with a specific Behavior, which immediately results in an outcome (Consequence) that either increases the likelihood of of the behavior happening again (reinforcement) or it doesn’t (absence of reinforcement or punishment).

Most people in special education are at least familiar somewhat with using this approach to dealing with inappropriate behaviors. You don’t want to deliver a reinforcing consequence when an inappropriate behavior occurs. Instead, you want to reinforce a more appropriate replacement behavior that still meets the student’s needs; the behavior was happening for a reason and you can’t leave its function unaddressed or a new behavior will just develop around it. Treat the cause, not the symptom.

You only resort to punishing the undesired behavior when reinforcing the desired behavior is not sufficient at extinguishing the undesired behavior. Presenting reinforcement for doing what is expected and withholding reinforcement for doing what is not expected is usually a pretty powerful strategy for positive behavioral interventions.

When using ABC data collection and analysis on the fly during instruction, your thought process is a little different. When you’re looking at whether a student is learning from the instruction you are providing, especially when working with students who have significant impairments that limit their expressive communication skills, sometimes it’s the raise of an eyebrow, the turn of a head towards you with eye contact, or the smile or grin that tells you whether or not you’re getting through. There is still an Antecedent (the delivery of your instruction and/or check for understanding), a learning Behavior (the student’s response to your instruction and/or check for understanding, whether verbal or not), and a Consequence (praise for learning or encouragement for trying) that increases the likelihood that the student will remain engaged and continue to participate in the instruction.

When using ABA-based data collection methods to measure for IEP goals, so long as the goals are written as math word problems based purely on observable learning behaviors, it’s pretty straight forward. Take for example this goal, which is purely made up for illustrative purposes: “By [due date], when given 10 calculation problems using multiplication of double digit numbers per trial, [Student] will calculate the 10 problems with at least 80% accuracy per trial in at least 9 of 10 consecutive trails within a semester, as measured by work samples.”

This is easy. There are 10 problems per trial. The student needs to get at least 8 out of 10 problems right per trial (measure of accuracy) in at least 9 out of 10 consecutive trials (measure of consistency) within a semester (measure of time) in order to meet the goal. Nothing is left to guesswork. Everything is represented by an increment of measure.

What ruins a goal out of the gate is basing any part of it on internal thoughts and feelings experienced by the student. Never start a goal with language like, “… when feeling anxious or angry …” or “… when presented with a non-preferred task …” You can’t trigger the onset of measurement based on something you can’t observe. You only know what the student is thinking or feeling once they express it in some way.

There is no way to get in front of the student’s expression of their thoughts or feelings to prompt their behavior in an appropriate direction because there is no way to know what the student is thinking or feeling before they act. Other people’s thoughts and feelings, including those of special education students, cannot be observed or known by other people. No credential in special education imbues special education personnel with clairvoyance. By the time you know what the student is thinking or feeling, it’s too late to influence how they act on those thoughts or feelings; you only know because they’ve already acted.

The same goes for preference. Preference cannot be observed and it can vary from day to day, or even moment to moment, for a lot of special education students. What is preferred at one time will often not be preferred at others. Eventually it is possible to have a good idea of what is not preferred by a student, but then confirmation bias can enter the picture and you see what you expect to see, not realizing you’re prompting it according to your preconceived expectations.

What makes more sense is to write goals that do not target what are referred to in ABA as “private events,” but rather to expected behaviors. For example, a common behavior targeted in the IEPs of students with challenging behaviors is work refusal, which is to say non-compliance with task demands. A teacher will assign a task and, if the student is non-compliant, they will either passively sit there and just not perform the task; do something else passive instead, like doodle or read a book; engage in distracting or disruptive behavior, like play on their phone or talk to their neighbors; or engage in outburst behaviors, possibly accompanied by leaving the room (eloping).

It’s usually pretty easy to figure out if there is a pattern to the types of tasks assigned and when non-compliance occurs such that preference can seem easy to identify. But, trying to rely on that for the purpose of measurement is like trying build a house on shifting sands because someone’s preferences can change so quickly.

The language that I see most commonly used in goals that work around the issue of private events reads more or less like this: “By [due date], when assigned a task, [Student] will either initiate the task, ask for help, or request a 2-minute break within 60 seconds of the task being assigned in at least 8 of 10 consecutive opportunities as measured by data collection.”

This makes things easy. Regardless of whether the student has a personal preference or not for the task being assigned, they will either start the task, ask for help with the task, or take a short break and get it together before they come back to the task.

Some students have processing speed delays that interfere with their ability to get started right away. They need extra time to process the instructions so they understand what you want them to do. Sometimes that extra little break is all they need to get there independently. It just takes them a little longer to think it through and make sense of what you want from them before they know what to do and can start. Other students get emotionally overwhelmed and just need to go get a grip before they tackle the expectations being placed on them. Yet others take longer to stop one activity and transition to another one. That short little break can buy them the time they need to process the mental shift of set and orient themselves to the new demands being placed on them. Other times, students just don’t understand the expectation being placed on them and need clarification.

In any event, if there’s a problem, the goal provides a solution; otherwise, the student just needs to perform the task as assigned. Further, the language of this example goal can be modified for a student to provide for alternative acceptable responses and/or a different response time.

With respect to measurability, there is no guessing about what anybody is thinking or feeling in a goal formatted this way. Measurement is triggered by the delivery of a task demand (the assigned task) and is based on whether any of the described acceptable outcomes occur within 60 seconds. All of the elements of the goal are measurable.

Further, a goal written this way follows the ABC format of ABA. First an Antecedent is presented (the task demand), then one of three acceptable Behaviors (task initiation, request for help, request for break) occurs, then an appropriate Consequence (completion of the task, delivery of help, or receipt of a short break) is immediately forthcoming. Everything that needs to be measured can be observed. The observable criteria are easily represented in increments of measure. It’s black-and-white without making any assumptions about a student’s thoughts, feelings, or preferences.

So, having said all of this, how does this get us to the point of the article, which is how parents can successfully advocate for the application of the peer-reviewed research to the design and implementation of their children’s IEPs? Well, first, I needed to be clear as to what I mean by applying the peer-reviewed research, hence everything I just got through explaining.

Parents first need to understand what they are asking for and how it impacts the design and implementation of their child’s IEP. Further, any professionals reading this for the purpose of further developing their skill set may not have all the background information necessary to make sense of all of this, either.

A foundation first had to be laid. Having now done that, parents need to keep the information I’ve just shared in mind when participating in IEP meetings and reviewing IEP documents for appropriateness.

If you live in a consent state like California, I usually suggest signing only for attendance at the meeting and taking the document home for review before signing agreement to any of it. In California and other states, you can give partial consent to an IEP and the education agency has to implement the consented-to portions without delay while the non-consented-to portions remain subject to IEP team discussion and negotiation.

Anything that can’t be resolved via the IEP process must go to due process for resolution, whether you are in a consent state or not. Just because you are not in a consent state doesn’t mean that an education agency won’t change the language of an IEP at your request. An IEP meeting would likely be called to discuss your concerns and, if you back them up with facts and logic, the education agency isn’t going to have a good reason to say, “No.” Not everyone is outlandishly unreasonable in special education; there are some definite bad apples, but they don’t account for the entire barrel. Due process is your only resort if your efforts to resolve things at the IEP level are not met with success and your child is increasingly compromised because of the unresolved matters.

If you are unfortunate enough to have to rely on due process to see things resolved, the fact that your denied requests were supported by facts and logic will only help your case once you get in front of a hearing officer. Understanding the underlying arguments of what makes something legitimately measurable and the federal requirement that special education be delivered according to what science has already proven works makes you a far more informed IEP participant than at least some of the other people at the table.

As a parent, the more you can support your requests and arguments with peer-reviewed research, the better. Once you frame your requests according to the proven science and make it as black-and-white as possible, you eliminate all kinds of silly arguments. This means not only asking for goals that are truly measurable, though that goes a long way towards solving and preventing a lot of problems, but also understanding the nature of your child’s disability(ies) and what the research says can be done to teach to learners with such needs.

Gathering the necessary research data to inform a request for a particular assessment, service, curriculum, methodology, technology, or placement requires accessing the peer-reviewed literature and understanding what it means. A lot of it is really dry and technical, as well as expensive. This isn’t a burden parents should have to take on, but if it’s one that they can take on, it will only help them become better advocates for their children. Google Scholar can be a good place to start.

In truth, it should be education agency personnel doing this research, but if parents want to see the science applied, they may have to push for it, themselves. Parents can also submit published research articles to their local education agencies that appear to apply to their children’s educational needs and request that the approaches used on those articles be used as part of their children’s special education programs, including being written into their children’s IEPs. If the local education agency declines to honor any request, 34 CFR Sec. 300.503 obligates it to provide Prior Written Notice (PWN) explaining why to the parents.

Conversely, if the education agency proposes a particular approach and the parents are unsure about it, the parents can request an explanation of the peer-reviewed research that underpins the education agency’s offer. Either it honors the request or it provides PWN explaining why it won’t. If it’s the latter, it better be one heck of a good explanation or it will only reveal that the education agency has no research-based explanation for its recommended course of action, giving the parents a good reason to dispute it.

If what you are asking for as the parent is backed up by facts, logic, legitimate measurement, and credible research that all directly apply to your child, and the education agency still says, “No,” then you will either end up with no PWN because the agency doesn’t want to put the denial in writing, which violates the law and only makes your case stronger in hearing, or you will end up with a PWN full of malarkey that won’t stand up in due process. If what you are asking for makes total sense and the education agency won’t do it or something else equally or more appropriate, the education agency will have some explaining to do in hearing.

So long as what you are asking for is necessary for your child to receive an appropriately ambitious amount of educational benefits (meaning as close to grade level or developmental norms as possible), there’s not a lot of good reasons for a public education agency to turn down your request. It’s illegal for the public education system to use fiscal considerations to determine what should be in a special education student’s IEP.

Just be sure to submit all of your requests for changes to your child’s IEP in writing. It is the education agency’s receipt of your written request for changes that triggers the PWN requirement. In the instance of requesting assessments, many states allow for a public education agency to decline to conduct assessments for special education purposes upon parent request, but the agency must provide PWN when doing so. For more information on special education assessments, see our previous post, “The Basics of Special Education Assessments.”

If it doesn’t decline a parent’s written request for assessment, the education agency must provide the parent with an assessment plan to sign that authorizes the agency to conduct the requested assessments. State law regulates the provision of assessment plans; in California, local education agencies have 15 calendar days to get an assessment plan to the parent, regardless of who made the referral for assessment. Submitting the request for assessment in writing is not only important for triggering the PWN requirement if the request is declined, it’s also important in establishing when a state-mandated timeline starts counting down.

You as a parent can encourage the application of science in special education by insisting upon it. If you live in California or another consent state, you can use your authority to withhold your consent to anything that looks sketchy in an IEP being given to you for your signature. You can consent to instruction in the areas targeted by IEP goals but not to using the language of the goals for the purpose of measuring progress if they aren’t actually written in a measurable way. You can consent to everything in an IEP except a change in placement. If you can’t resolve all of the issues you have with an IEP this way, those left unresolved become due process issues.

Even if you are not in a consent state, you can still make the record in writing that you disagree with the sketchy portions of your child’s IEP, explain why using math and science, and request appropriate changes. The local education agency will likely call an IEP meeting and change those things it’s willing to change and give you PWN on those things it is not willing to change. The things left unresolved at that point are due process issues.

Understanding how to use math and science to solve everyday problems is a solid skill to have, but not everybody has it. It’s a skill necessary to developing a sound IEP for any special education student. Parent education can be provided as a related service under a student’s IEP if the purpose of the parent education is to help the parents understand their child’s disability and/or to help them be equal participants of the IEP team. There is absolutely nothing wrong with parents asking to be trained on how to write measurable annual goals and the IEP process in general as part of parent training as a related service under their child’s IEP. Parent training is specifically named as one of many possible related services that can be provided to a student with an IEP by 34 CFR Secs. 300.34(a) and 300.34(c)(8)(i)).

If you’re distrustful of the quality of instruction you might get from parent training through your child’s IEP, you may have to result to self-education by reading everything you can find about your child’s disability, as much of the peer-reviewed research about instructing learners with the types of needs your child has as you can digest, and simplified reports of the research findings in trusted publications from credible sources. You may need to periodically consult with experts for hire, but what you invest in informing yourself you may save many times over by preventing yourself from getting duped.

The bottom line is that parents can protect their children’s right to evidence-based special education planning and implementation the more they understand how to use measurement and evidence in the planning and implementation processes. By knowing what to look for, they know what request when they don’t see it. Informed parents can monitor the situation for education agency compliance.

In those areas where parents have not yet mastered the knowledge necessary to know whether an approach is appropriate for their child or not, they are encouraged to ask questions like, “Can you explain to me how this fits my child?” and “How can we measure whether this works in a meaningful way?” By shifting the burden back onto the education agency to explain how and why its recommendations are supported by the peer-reviewed research and written in an appropriately measurable manner, parents rightly shift the burden of applying the science to the appropriate party.

Parents are not, and should not, be required to become experts in order to participate in the IEP process. But, for the sake of protecting their children’s educational and civil rights, and their own rights to meaningful parent participation in the IEP process, it behooves parents to become as knowledgeable as possible. It’s more difficult to get tricked or misled the more you know, and the more dry and technical you can keep things, the less hysterical drama you’re likely to experience in dealing with your local education agency.

References:

Drasgow, E., Yell, M.L., & Robinson, T.R. (2001). Developing legally correct and educationally appropriate IEPs. Remedial and Special Education 22(6), 359-373. doi: 10.1177/074193250102200606
Kimball, J. (2002). Behavior-analytic instruction for children with autism: Philosophy matters. Focus on Autism and Other Developmental Disabilities, 17(2), 66-75. https://doi.org/10.1177%2F10883576020170020101
Yell, M. & Drasgow, E. (2000). Litigating a free appropriate public education: The Lovaas hearings and cases. The Journal of Special Education, 33(4), 205-214. doi: 10.1177/002246690003300403

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