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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.

Zafer Elcik – Otismo

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!


Click here to see Zafer’s TED Talk

See how disability rights advocacy and smart device-based interventions can put evidence-based practices into the hands of the people, regardless of whatever rules and regulations may apply (or not) where they live.

Go into the video settings on YouTube to turn on English or other language auto-translation.
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Poll for Jan. 15, 2022 Meetup

I have started an online special education advocacy group on Meetup, and our first bi-weekly meeting is scheduled for January 15, 2022. In advance of our first meeting, we’re collecting information about what will be discussed.

If you intend to participate in our upcoming meeting of January 15, 2022, or would otherwise like to inform the discussion, please answer the following poll question by no later than January 10, 2022:

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I’m looking forward to expanding our outreach to parents and professionals involved in special education through Meetups. Feel free to share this information with others who might benefit from it. ~ Anne

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Amazon Gift Card Contest

Win an Amazon Gift Card from KPS4Parents

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.

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Recent Uptick in Behavioral Challenges

Now that the Fall 2021 half of the regular school year has come to an end and all the students on my caseload are on Winter Break, I’m taking advantage of the break from back-to-back Individualized Education Program (IEP) meetings to reflect on the most serious issues I’ve had to deal with so far during this first half of the current school year.

While I’ve had to deal with a lot of different challenges, it is the impact that the lack of appropriate services during shutdown, from March of 2020 to August or September of 2021, that has hit hardest. It’s been the absolute most hardest on my students with intensive behavioral services in their IEPs who have suffered the most regression and lost educational benefits. School districts all over Southern California, and likely elsewhere throughout the State and beyond, refused to provide in-person services to children on IEPs who required them in order to continue learning during shutdown.

This was in spite of explicit changes to State law that mandated in-person services for those special education students who needed it and compensatory education for any special education students who lost educational benefits during shutdown. Not only were in-person services denied, compensatory services are still being denied as school districts act like their students’ regression has nothing to do with the fact that the districts failed to provide in-person services to these children during shutdown.

What was done instead? Aides employed originally to provide direct, in-person support to these students in the classroom setting were put on Zoom, Google Meets, Microsoft Teams, or whatever else platform their employers were using for distance learning as remote participants. How in the Hell an aide on Zoom was supposed to provide the supports necessary to facilitate the student’s participation in online learning via Zoom was anyone’s guess. It consistently failed to work.

Further, even though the new laws clearly made it an option, only one of my students’ districts hired a non-public agency (NPA) to provide in-person behavioral support services in the student’s home during distance learning so the student’s behaviors could not be permitted to allow him to escape/avoid the instruction. Instead, they rewarded his participation and prompted him to return to task when his attention wandered, so he was able to make excellent academic progress during distance learning.

What he wasn’t able to work on was his social skills with peers and adults in normal everyday settings. When he returned to on-campus learning, his classroom behaviors became increasingly challenging and the behaviors of the other students in the class became escalated in response. It eventually got so bad that the other students in his non-public school (NPS) classroom assaulted his NPA behavior aide because they blamed her for keeping him in their class. He triggered them that badly.

We ultimately changed his placement right before Winter Break started and a due process case for the involved district’s utter failure to offer or deliver a Free and Appropriate Public Education (FAPE) for the last two years is now pending. Settlement is entirely possible, which I can’t discuss in detail, and the IEP team has come up with a strategy to hopefully salvage his education for the moment, but this is a student who is able to meet academic standards in spite of his grossly impaired social skills.

Our concern is that he will graduate with a diploma and get arrested the next day for acting out in public. His behavioral needs have been exacerbated by shutdown because he didn’t get any instruction or practice in behaving in socially appropriate ways when in-person with peers or adults at school. In part, this was because the NPS he had attended had a “philosophy” that failed to conform with the evidence-based scientifically valid practices of the NPA that was providing his behavioral interventions.

As such, NPS staff regularly failed to abide by the Behavioral Intervention Plan (BIP) in the student’s IEP, much to the frustration of the NPA experts who had designed it and much to the danger of the Behavioral Intervention Implementation (BII) staff who was assaulted by my student’s classmates because he made them so upset. Rather than work collaboratively with the experts hired to address his behaviors using methods proven to work by science, the NPS staff would engage in ad hoc interventions based on whatever ideas popped into their science-denying minds in the given moment, none of which worked.

Most of the students in the NPS had mental and emotional health needs, many of which arising from past trauma, but our student had autism and just didn’t know how to read the room. It was dubious as an appropriate placement from the outset, but the ecological factors of the on-campus setting weren’t a problem during distance learning.

It wasn’t until our student, who not only has autism, but also ADHD, started attending on-campus, which required him to be in transport between home and school for a total of five hours per day, and then attempt to behave in a socially appropriate manner among other students with serious mental and emotional health needs, that things really fell apart. He might as well have been put into a rocking chair in a room full of long-tailed cats.

The harm was inevitable. And, as always, he’s being blamed and vilified while no one from his school district offers something appropriate to his needs. We’re hoping the interim placement he has for now will benefit him more than where he’s been, but it’s still less than ideal. It may take a judge to figure it all out.

I’ve had two other students on my caseload face expulsion just within the last few weeks. One student’s case just recently settled after the involved school district attempted to assert that behaviors that were clearly associated with the student’s disabilities somehow magically were not, during a Manifestation Determination (MD) IEP meeting.

The only way for a parent to appeal an MD IEP meeting outcome is to file for due process. Because the student is facing expulsion, the hearing is automatically expedited. This gives parents very little time to prepare for hearing, much less find adequate representation.

I was able to refer this family to an attorney right away who was able to handle the MD appeal via due process. We were lucky to find a really good attorney who could take the case right away and handle it. Most of my attorney colleagues are overwhelmed with the volume of cases they are getting, right now. The violations are everywhere, evidently, and this failure to provide in-person services during shutdown when they truly were needed seems to be a recurring theme.

This case settled because we were able to move quickly through the process and find a good attorney who could handle going to an expedited hearing if necessary or otherwise negotiate an appropriate settlement. Not everybody is having that same experience, these days. This family was lucky. The violations in this student’s case were pretty egregious and the attorney was able to convince the involved school district that it wasn’t worth going to hearing.

My other student facing expulsion still awaits a decision from school site administration as to whether the principal should just let the IEP team effect a change in placement for special education reasons rather than subject this student to expulsion proceedings. Again, the involved school district tried to claim that the student’s disability had nothing to do with the behaviors, which was simply ridiculous.

The student already had behavioral interventions built into his IEP to address the very kinds of behaviors for which he was in trouble. He had a history of escalating to the most outlandish behaviors he could think of to come right up to the line and just barely cross it enough to get himself kicked out of school to avoid the instruction. He hated it that much.

He had transitioned to his current placement in a Special Day Class (SDC) for special education students with behavioral challenges from a special school where all the students had behavioral challenges at the start of the 2019-20 school year and had been largely successful for most of that school year, until the shutdown started in March 2020. During that time, his targeted behaviors of work refusals and avoiding the classroom setting altogether were entirely reinforced by being stuck at home on the computer while the aides from his SDC were also in their own homes using their district’s online meeting platform.

There was no one in his home trained in the interventions that were necessary to compel his compliance with teacher directions. There was no one who could make him even login. He had a baby sister at home and his mother was not about to have him triggered into angry outbursts in the home by trying to convince him to participate in the instruction with a baby in the house. Further, his mother was medically fragile and required multiple surgeries throughout the shutdown and afterwards. She was in no position to handle the angry outburst of a frustrated teenager with no impulse control due to ADHD struggling with the work because of a co-morbid learning disability.

We have a complaint pending before one of his school district’s regulatory agencies in response to its mishandling of his behavioral needs to date. He is now pending expulsion for a behavior we’re fairly convinced he engaged in so as to be kicked out of school. We don’t believe he ever had any intent to hurt anyone, but he did enough wrong for someone who doesn’t understand the function of his behaviors to think he might pose a credible threat. Law enforcement determined he posed no threat. It appears that district personnel may have exaggerated the severity of the behavior on purpose to justify expulsion.

All that said, the expulsion case may be dismissed if the district agrees to simply let the IEP team refer this student back to his previous placement at the special school. It was successful in preparing him for his transition to a comprehensive high school placement before shutdown; it should be able to return him to that state and help him transition back, again, with success. We also have a ton of new assessments pending to figure out what the most appropriate IEP for him should be, going forward.

This situation may deescalate before it has time to turn into a full kerfuffle. If we can all just agree to work together to address this student’s serious behavioral regression through the IEP process and avoid the expulsion process altogether, particularly given that this district is being looked at very closely by one of its regulators right now for failing to adequately support this student thus far, already, we can implement a solution that will eliminate the parent’s need to pursue accountability.

The goal isn’t to nail the school district’s hide to the wall; the goal is to get the student appropriately served as quickly as possible. Nailing hides to walls should only take place if it’s absolutely necessary to get a student appropriately served as quickly as possible. It’s a last resort option.

I have yet another student whose case is pending settlement, hopefully. It would be foolish on the part of his school district to allow it to go to hearing. I can’t discuss much about it while it’s pending settlement, but suffice it to say his school district totally blew it by failing to provide in-person behavioral services and supports during shutdown.

He has a host of learning challenges including partial vision loss, severe autism, intellectual disability, a seizure disorder, extremely limited communication skills, and self-injurious behaviors that frequently result in property damage in his home. His windows now have Plexiglas® panes and the dry wall in his home has been replaced so often, his family has lost count. He has made frequent trips to the emergency room and urgent care for medical treatment after hurting himself during an outburst. He has hurt his petite mother by accident.

He’s now a young adult who is still eligible for special education and he’s had these behavioral challenges his entire life. He’s been a student of the same school district his entire public education career. It’s not like they don’t know what he needs. Before shutdown, he received intensive 1:1 and 2:1 behavioral supports throughout the school day to keep him safe and engaged in the instruction. He got none of that at home during shutdown.

His mother was left to be his 1:1 aide support during distance learning over a computer while his actual aide support staff stared back at him from the screen from their own homes. He was immediately triggered into violent outbursts because he didn’t understand why he wasn’t at school with these people instead of looking at them on a computer screen. His participation in distance learning had to stop immediately for his own safety and that of his mother. It’s been a struggle ever since to get an offer of appropriate services in his IEP as a prospective matter of FAPE, much less with respect to all of the compensatory remedies he’s due.

This student’s case has been referred to a different attorney than the one mentioned above, but also an amazingly talented and smart one. Because settlement terms are still being discussed, I can’t speak much further to the matter, but I think the point is made that this is happening way too much. We’ve got too many kids who didn’t get what they needed during shutdown who are now owed compensatory remedies and they have until March 2022 to file for due process on their claims.

Special education attorneys who represent families are working at capacity with respect to their caseloads. That said, there have now been enough cases litigated and settled since the increase in claims began that openings are starting to come on many caseloads. Others are bogged down by appeals, which are largely occurring in the federal District Courts.

Some attorneys are having an easier time these days than others, just depending on whether they get good judges at the due process level, or have to work the appeals system before they get to someone willing to take the time to really listen to the arguments and examine the evidence relative to the rule of law and applicable science. That’s always the chance that attorneys take with these cases, and it’s not fun to work the appeals, I promise you.

I’ve provided paralegal support on cases all the way up to the 9th Circuit Court of Appeals, and there is nothing more tedious than a Table of Uncontroverted Facts, because there are always facts that become controverted between the parties. The back-and-forth between the parties about what facts were agreed to, which ones were disputed, and all the references to the evidence and testimony on the existing record from the original due process case and previous appeal to the District Court that supposedly supported each party’s asserted facts, became one of the most exhausting exercises I’ve ever engaged in as professional. I have ADHD – Inattentive Type, myself, so trust me when I say it was grueling.

Litigation should always be the very last resort to solving a special education problem, but these days it’s been necessary. For those of you finding yourselves in similar circumstances, I’d like to share a decision from the California Office of Administrative Hearings (OAH).

I downloaded the PDF of this decision just in case it ever gets taken down in the future, and have uploaded it to our site. Click here to download the PDF of this due process decision from California in which the Administrative Law Judge (ALJ) found in favor of a student who was deprived of educationally necessary in-person behavior services during shutdown, if the link to the OAH site doesn’t work. In this case, the ALJ ordered compensatory services as remedies to the student.

If this decision can help you argue for resolution to your own child’s lost educational benefits during shutdown, whether via due process or just a sensible discussion with your school district’s representatives, it will have served its purpose as a persuasive authority on the subject. If you find it necessary to hire an attorney to file for due process over shutdown-related deprivation of educational benefits, be sure to share this authority with your attorney. They may have very well already seen it, but if you can relate the facts of your own child’s case to the facts of this due process case linked to here, you will help bring your attorney up to speed regarding your child’s claims, so you can timely file your case before March 2022.

You may also choose to use this decision to support your arguments as you advocate for your own child in the IEP process as a parent. If you share this decision with your school district’s IEP team members and relate the facts of your child’s situation to the similar facts in this due process case, presuming your child’s case follows a similar pattern of a denial of behavioral services from his/her IEP during shutdown, your school district may be compelled to work with you rather than have you lawyer up and then have to deal with the costs of a legal action.

Parents’ attorneys’ fees and costs can be recovered from the offending school districts as a condition of settlement or upon prevailing in due process or appeal. School districts are smart to work things out through Informal Dispute Resolution (IDR) Agreements or Confidential Settlement Agreements, if they can. The costs of due process and any subsequent litigation are far too great for taxpayers to fund when those dollars could be spent on educating children, instead. Spending education dollars on fights over the deprivation of educational benefits just adds insult to injury, honestly.

The evidence is increasingly making clear that far-right politics have way too much influence on public education at various levels of government, from local to state to federal education agencies. This is how public service was infiltrated at its weakest point. Extremists would get elected by an uniformed or misinformed electorate, then hire their cronies to work for them within their agencies, undermining the efficacy of local government while mishandling the finances in order to “prove” that government doesn’t work while arguing for increased local control and reduced regulatory oversight.

Then they pay themselves more than they’d ever earn in the private sector where job performance matters as they slash resources to those expected to actually deliver on the agency’s mandates who work beneath them. This is the climate in which special education violations occur. This is why public agencies defy the regulations to the detriment to some of our most vulnerable children, many of whom coming from low-income households whose parents are often at a loss as to how to fight back. Most parents won’t do anything because they don’t know what to do and don’t realize how badly their children are being hurt in the long run.

If you are a parent whose child did not get appropriate services during shutdown, and who has regressed and may require compensatory services to be brought back to where he/she should be in school, right now, you’re not alone. Whether you negotiate resolution on your own with you local education agency or hire someone to help you, know that many other parents have already started to fight this same fight before you, and some really helpful decisions are coming out of the various venues that can help bolster the arguments you and/or your representatives make on behalf of your child.

I hope this helps you put your own child’s situation into perspective and gives you some ideas on how to go forward in the most constructive and least adversarial way possible. I can only imagine the other families’ stories that out there similar to the ones I’ve described and the case captured by the decision linked to above. All of you are in my heart and I’m praying for you all.

#specialeducation #disabilityrights #disabilities #childrenwithspecialneeds #positivebehavioralinterventions #positivebehavioralsupports #appliedbehavioralanalysis #evidencebased #evidencebasedpractice #regulatorycompliance #compensatoryeducation

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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.

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Getting Help with Post-Shutdown IEPs

Download a PDF of the written transcript of the audio from this video by clicking here.

In this video, Anne summarizes how the IEP process is supposed to work in the first place, then how that process applies to students with special needs in preparation for returning to school in the Fall 2021 semester following pandemic-related school closures.

Parents can get the information they need to successfully advocate on their own in many situations. If you are dealing with complex violations of the law and need extra help, Anne explains the types of services and referrals we provide to parents and colleagues to help solve these kinds of problems.

Don’t start next school year without a strategy! We’re here to help.

Copyright 2021, KPS4Parents

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“Long COVID” Cognitive Impairments and Their Implications for the Special Education Community

Photo credit: Marco Verch

On July 22, 2021, The Lancet published an article by Adam Hampshire, et. al., in which the findings reported that COVID-19 causes long-term cognitive impairments among many of those who have been ill with it, particularly those who have been hospitalized with severe forms of the illness and those diagnosed with COVID-19 but not hospitalized. I won’t rehash the entire article here. Follow the link to read it for the details.

In today’s post/podcast, I’m summarizing the findings of this body of research and discussing their implications for the special education community. First, let’s look at what the cognitive impairments caused by COVID-19 can look like, and then we’ll talk about what this means for the special education community.

This research by Hampshire and his team specifically found: “[The] results [of this study] accord with reports of ‘Long Covid’ cognitive symptoms that persist into the early-chronic phase. They should act as a clarion call for further research with longitudinal and neuroimaging cohorts to plot recovery trajectories and identify the biological basis of cognitive deficits in SARS-COV-2 survivors.”

So, basically, there is evidence to support that if a person gets sick with COVID-19, they can experience cognitive impairments that last a long time, perhaps permanently, and further research is needed to understand the long-term consequences of millions of Americans having their cognitive functioning reduced by COVID-19. For our kids about to go back to in-person learning, the questions become about whether they will end up subjects in that research after getting COVID-19 and experiencing cognitive impairments, and what will be done to benefit them if they are affected in such a way.

The symptoms, specifically, were reported by Hampshire and his team as: “… colloquial reports of ‘brain fog,’ … low energy, problems concentrating, disorientation, and difficulty finding the right words.” Further, there is evidence that “… COVID-19 patients can develop a range of neurological complications including those arising from stroke, encephalopathies, inflammatory syndrome, microbleeds, and autoimmune responses,” any of which can cause brain damage or impairment.

As children face returning to school as the Delta Variant of COVID-19 rages through unvaccinated populations, including children under 12 who are not eligible for vaccination, all parents in their right mind are worried about their children getting sick. The risk of long-term cognitive impairment during the critical learning years of child development and/or permanent brain damage are now yet more reasons for parents to want to keep COVID-19 far, far away from their children.

The sad reality is that a lot of children in areas of the country with low vaccination rates, many of which are communities compromised by poverty and reduced access to resources in the first place, are going to get COVID-19, and a fair number of those that survive are going to experience cognitive impairments as a result. This means a whole new cohort of children entering special education who otherwise would not have required it, thereby increasing the special education burden of every local, state, and federal education agency.

For those children already on IEPs who get sick with COVID-19 only to be further cognitively impaired by it, we’re going to see changes in their present levels of performance that make their current IEPs no longer appropriate to all of their needs. They are likely to experience regression and an increased need for supports and services in their IEPs, meaning yet another increase in the burden on local, state, and federal education agencies.

This is, of course, preventable with appropriate safety measures. The problem is that we have some local and state leaders doing everything they can to spread the disease, banning mask mandates in our public schools, for Christ’s sake! We have millions of unvaccinated children expected to co-mingle in crowded spaces that will become super-spreader sites that induce cognitive impairments among the students who are there for the purpose of enhancing their cognitive abilities.

And, it’s the same conservative leaders who are pushing to ban mask mandates in schools who will refuse to fund their students’ special education services when they come back to school with cognitive impairments later on. Parents can fight together now to prevent their children from becoming cognitively impaired, or at least more impaired than they already are, by pushing for appropriate safety measures in our public schools, or a smaller but significant number of them can fight later on for special education services for their children who experience “Long COVID” and resulting neurological impairments.

Aside from the obvious lingering health problems that children who experience and survive COVID-19 can have, which will require ongoing care that parents previously weren’t having to provide, there are the added complications of learning problems that will require parents to exhaust themselves further to pursue. Special education was already falling grossly short of the mark, but we’re now in the process of creating the next large population to blaze a litigation trail across the judiciary with special education cases: COVID-related impairments.

As it stands, regardless of the symptoms, if a student who survives COVID-19 ends up with long-lasting health and/or cognitive problems that interfere with access to learning, the fact that it’s the result of COVID-19 could cause that student to meet criteria for “Other Health Impairment (OHI),” under special education law [34 CFR Sec. 300.8(a)(1)]. It’s not like a new eligibility category would need to be created.

The special education world went through similar chaos during the 1990s when Attention Deficit Hyperactivity Disorders (ADHDs) first became understood and widely recognized as an actual set of conditions. The University of California, Los Angeles (UCLA) ran a great big study on ADHDs. I remember attending a panel discussion by individuals who had participated in the study back in the day.

Back then, ChADD (Children with Attention Deficit Disorders, as it was known back then), was big on the advocacy scene while litigation went forward in the courts to determine if kids with ADHDs were eligible for special education. The ultimate outcome was that there didn’t need to be a separate eligibility category for ADHDs because they were captured by either the Specific Learning Disability (SLD) or OHI categories, depending on how each affected child experienced it.

Back in the early 1990s, I went to a speaking engagement at which the founder of ChADD, who was also one of the parents taking this landmark litigation forward, described the favorable outcomes the litigation had achieved, but also how awful it was to have to go through all of that and how vindicated his family felt in the end, particularly his child with ADHD.

I see the same thing happening here with kids who will be disabled by COVID-19 to such a marked degree that they require special education and related services in order to access education, and kids who already needed special education who will now become even more greatly compromised than they already were after surviving COVID-19. Plus, I see this happening the most in the states and locales least likely to protect their children against COVID-19, which are also the states and locales least likely to comply with special education law.

Far right politics have undermined the success of special education at the local and state levels since special education law was created. In fact, the laws that protect our children with special needs were created in response to these far right political efforts to deny them access to education. The situation has literally become life with permanent disability or death for far too many of our children, and still the public scrutiny on the right wing fuckery that goes on in public education has not become intense enough to change the broken system.

How much more broken will the system become when it has killed a percentage of its students and permanently disabled yet another percentage who will now require special education when they didn’t before or who will now need more intensive special education above and beyond what they were previously getting? At what point in the future will all of the associated costs created by neglecting our kids now finally matter enough for the tax-fattened hyenas that are undermining public education from within to realize it’s in their best political interests to actually protect and educate their students?

Political extremism in any form will derail the most sensibly created system, but public education was not sensibly created for the present times and the political extremism has always been part of it. Many have the misconception that public education stopped serving as an arm of the Patriarchy once it became a female-dominated profession. But, there is nothing professional about a bunch of “Karens” sitting around a table passing judgment over a single, low-income mom of color with a kid who has a mental health disorder and related behavior problems instead of helping her and her child.

Thankfully, the field is changing and we have more scientifically-minded people entering special education, but there are still a lot of the old cronies hanging in there for as long as they can before grabbing their pensions and running off into the sunset, leaving all kinds of poorly educated, if not traumatized, children in their wake. This country is going to through a reckoning in which ethics and the rule of law are at the heart and soul of it all. Ethics and the rule of law have always been the heart and soul of special education disputes, and I can only see what is happening on the national level as an expansion of what I’ve been fighting for the last 30 years.

The thing that also is getting lost in this debate is the impact of “Long COVID” on teachers, specialists, and administrators. How does inducing cognitive impairment among a public education agency’s personnel serve the public good? How is that an appropriate employment practice for any employer? Why are we willing to impair the minds meant to sharpen the minds of our children? How is this self-preservation as a species?

As a tough old broad who has already seen the kinds of bullshit these people can pull, and given how much bullshit the American public is starting to realize can happen within our supposedly democratic government based on what is now coming out about the 45th President’s attempted soft coup d’etat following the 2020 election, I don’t think I’m being hyperbolic or alarmist when I point out the travesty we’re creating for ourselves in increased special education expenditures by failing to prevent childhood cognitive impairments as a result of “Long COVID.” I’m hoping this message isn’t falling on deaf ears.

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Double Disability Whammy During Distance Learning

One of the issues that I haven’t seen discussed anywhere else, but am seeing first hand every day, is the impact that the shutdown has had on my students with disabilities whose parents also have disabilities. Given that so many learning disabilities, physical impairments, Autism spectrum disorders, and mental health conditions run in families, it’s not surprising to find children on IEPs whose parents also have disabilities. It would be shocking for a professional in this field to not see that phenomenon.

The shutdown negatively impacted students and their families from all walks of life. Students on IEPs were hit more hard only because they were already at a disadvantage and largely under-served before the pandemic hit. All shutdown did was magnify the pre-existing inequality.

To that end, parents with disabilities who were already getting jerked around by their local education agencies have been disadvantaged and exploited even further during school shutdowns. I’ve got two cases on my caseload, right now, that immediately come to mind. One is in California and the other is in Missouri, and in both cases I’ve had to serve as both a reasonable accommodation for the parent with disabilities as well as do my normal job of advocating for the student with disabilities.

In both cases, a bunch of goons from the respective school districts tried to railroad learning disabled parents who struggle to understand the relevant documents, saying one thing verbally, putting something else in writing, and hoping these learning disabled parents didn’t notice. The parents’ federally protected rights as per the Individuals with Disabilities Education Act (IDEA) to informed consent and meaningful parent participation in the IEP process are additionally compromised by violations of the parents’ rights under Section 504 of the Rehabilitation Act and the Americans with Disabilities Act (ADA).

Here’s what I need everybody reading or listening to understand: The states involved here are Missouri, a red state practically overtaken by domestic terrorists bent on sedition, and California, a blue state with mostly progressive leadership. This is a non-partisan issue. There is no political party that seriously cares about people with disabilities, even though disability cuts across every swath of human existence that there is. It’s beyond dysfunctional, but that’s our profoundly sick society, for you.

So, what do we do about this? Well, on an individual basis, the steps of effective advocacy remain the same: get the truth on the record, request remedy, and file complaints if the local education agencies don’t abide. The number one protection parents with disabilities have under the ADA relevant to this issue is their right to communicate via their preferred form of communication. Reasonable accommodation isn’t limited to wheelchair ramps, and honoring a learning disabled person’s communication preferences is just as important as honoring the communication preferences of someone deaf or blind.

For parents with disabilities, it is important going in from the outset that you make clear in writing that you require reasonable accommodations from your local school district, including what your communication preferences are. It doesn’t hurt to add language like, “These accommodations under Section 504 and the ADA are necessary to insure my protected rights to informed consent and meaningful parent participation in the IEP process pursuant to the IDEA.”

If you have been keeping your need for accommodations to yourself for fear of being judged by the school district members of your child’s IEP team, something is seriously wrong. If you fear that people employed specifically to educate humans with disabilities are going to give you grief because you are a human with disabilities, either you’re insecure, working with a-holes, or both. You do yourself and your child no favors by not putting your local education agency on notice about your need for accommodations; if they treat you poorly, that’s on them for violating your rights as well as those of your child.

It’s stronger to go in asking for reasonable accommodations as your legal right given that you are there to protect your child’s right to reasonable accommodations. If you acquiesce on one, you’re acquiescing on the other. You have to believe that all people with disabilities are equal in power and voice to people without disabilities, including yourself. You are not setting a good example for your child to become a strong self-advocate in spite of disabilities when you fail to advocate for yourself.

Aside from what individual parents with disabilities do on a situation-by-situation basis on the ground, at this point, the only mechanisms available that have any chance of broadly changing anything are judicial and political. Parents need to sue over the civil rights violations that undermine their advocacy for their children so that public education agencies are held to account under every letter of the law that applies. All parents of children with disabilities need to unionize and collectively bargain for improved special education laws and access to special education resources.

In theory, parents with disabilities involved in the IEP process for their children may be able to concurrently file 504/ADA claims in federal court purely on the basis of the discrimination against themselves while filing for due process under the IDEA to assert their children’s claims. However, there’s a kicker that my colleagues who are licensed members of the bar should weigh in on, here.

With respect to informed parental consent and meaningful parent participation in the IEP process, the related civil rights claims may have to toll while due process is being pursued because a special education hearing officer has no jurisdiction with respect to 504/ADA but administrative remedies under the IDEA have to be first exhausted before related civil rights claims can be pursued. Basically, you have to do everything you can with due process before you can go on to federal court on related civil rights claims.

The reason civil rights claims often must toll pending due process is because the hearing officer in the due process case may order something to correct the special education violations that inadvertently cures the civil rights violations at the same time. This makes it unnecessary to get that same outcome from a federal court judge and, thus, a waste of judicial resources to try the same thing in two different venues. However, if the civil rights claims can stand alone on their own with no related due process claims associated with the same body of facts, it’s possible to go forward on civil rights claims while other claims are being adjudicated via due process.

Again, this is a tricky question of law and I defer to my colleagues who are licensed members of the bar to speak to the particulars of 504/ADA claims versus IDEA claims, as well as the order in which issues are tried and by whom. The point is that there is recourse, one way or another.

Parents with disabilities should not feel compromised in the IEP process. No parent should fear that a body of public servants educated, trained, and employed to support the needs of individuals with disabilities in the school setting will use that knowledge to exploit the parent’s disabilities to the detriment of the student. The very idea is reprehensible, but it happens every day.

Institutionalized biases have a lot to do with it. Even people employed to educate students with disabilities will regard a parent’s disabilities as character flaws, more often than not. It’s a learned, knee-jerk reaction that all of us have been raised with to one degree or another our entire lives. It’s why people with disabilities are often also plagued with self-loathing and related mental health disorders. Most people with disabilities aren’t born with self-loathing and mental health disorders; they are acquired from the experiences of being rejected by everyone else and seeing a world that is basically designed to exclude them from participation. Things that can be acquired can also be let go and replaced.

During distance learning, these issues became even more painfully apparent as schools shut down and children with special needs had to stay at home and participate in distance learning. Setting aside the degree of forgiveness due to actual teachers for not being given appropriate tools and support from their respective agencies to handle the situation, something cohesive should have been in place within the first few weeks, but I’ve still got school districts pulling ridiculous stunts and we’ve got partial campus re-openings going on around here, right now.

We’re now more than a year into this thing and, not only have they not gotten their acts together, they’re actively making excuses as to why the broke the law 40 million different ways before now. If they invested half the energy they’ve spent on making excuses and lying to the public into actually solving the problem, it would have been solved by now.

The politics of it all is at the heart of this issue, unfortunately. This is just as serious as domestic terrorism, because it’s actually one of many expressions of that terrorism. When parents with disabilities are terrified of the people to whom they send their children with disabilities every day, often with the threat of criminal prosecution for truancy if they don’t, they are being manipulated through fear to acquiesce on issues that, under the law, require their consent.

It is important for those of us who are working in the civil rights arena to recognize that we will find the students with disabilities we serve also among other marginalized populations that may have a stronger degree of activism already underway. For example, if a child with disabilities and African-American heritage is being jerked around, it may be more effective to bring a representative from the NAACP to an IEP meeting than a disability advocate. Likely, the best solution would to bring both.

This is an issue that child and family advocates need to address because it is vast, pervasive, and significant. When it comes to dumping the instructional responsibilities for a child with disabilities onto a parent with disabilities, the civil rights claims can easily multiply. I have had three cases this year involving parents with disabilities who were getting played by their local school districts until I said something. One case is resolved and the other two, which I mentioned at the beginning, remain active.

In every case, not only were the parents with disabilities being inappropriately burdened like all other parents during shutdown, they were not offered any reasonable accommodations to do so. In my mind, this is an enormous class-action issue that could result in entire state departments of education, which are ultimately responsible to the federal government for complying with the IDEA in exchange for federal special education dollars, getting nailed to the wall for failing to ensure local education agencies provided reasonable accommodations during shutdown to parents with disabilities who were attempting to instruct their children at home or who simply could not, resulting in a deprivation of educational benefits to their children.

I am very curious to get parent, advocate, and attorney input on this issue. If you have experienced anything like this, either as a parent or professional, and have ideas on how to lawfully resolve these issues with the least amount of trauma to the involved children and their families, we’d love to hear from you. For those employed within the system who want to do the right thing but are being prevented by others within the system, your feedback is appreciated as well.

The news is replete with evidence that far too many public servants can’t be trusted to uphold the rules of democracy. Because the IDEA is so dependent upon the application of science to the lawful implementation of special education, it tends to be those who disregard science and law who pose the biggest threat to our children with special needs.

Given how many Far Right conservatives there are employed within public education, the fact that the domestic Far Right is the greatest terrorism threat that our country faces, and that neither science nor the rule of law mean much to the Far Right, it’s not that hard to see why we need to get the Far Right out of our public school system. The Far Right is why civil rights laws are necessary in the first place. They’re not going to do the right thing because it’s the right thing to do. They don’t even understand what that means. They’re going to do whatever serves their selfish motivations.

People who follow the extremes at either end of any social spectrum, including politics, tend not to have fully functional prefrontal cortices, based on my observations. They lack the deductive reasoning skills to understand the big picture. They lack the perspective-taking skills to see things from anyone else’s point of view. They are egocentric in thought and grossly emotionally under-developed. They are prone to extreme actions and reactions based almost entirely on their own wants and needs.

In the special education setting, if you and your child’s needs don’t align with the agenda of people with this mindset, you don’t even exist to them. You’re like a person with a numbered ticket at the deli counter. They’re going to interact with you briefly and smile to your face, then forget you exist five minutes later. You’re a thing, not a person, to people like this. They don’t think of anybody as another “person.” Everybody else are just things to conveniently access when they serve a useful purpose to people who think this way. That is why holding them accountable after the fact is more effective than logical or emotional appeals made in an effort to prevent something bad from happening.

All of this is, of course, disordered thought. So, basically, what this comes down to is a bunch of mentally ill, self-serving individuals getting paid six-figure annual incomes at taxpayer expense to manifest their untreated and unaccommodated symptoms at the expense of their constituents. What we’re really looking at is the symptoms of untreated mental health disorders being manifested as public policy to the detriment of individuals who are not in denial about the fact that they have disabilities attempting to advocate for their children with disabilities.

The most apparent difference that I can see between the two sides of the issue is that the people within public education responsible for this situation don’t think there is anything wrong with themselves; they think they are the chosen ones and everyone else exists just to give them an excuse to collect a paycheck. When the special education community finally addresses the degree to which schizoaffective, personality-disordered administrators and the like are behind the egregious abuses of disability-related laws it experiences, and we use our science to heal ourselves, we’ll be able to actually use the science to heal our children and help them build productive futures for themselves.

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Podcast Interview: Catherine Michael, Attorney at Law & Author

Catherine Michael, attorney & author

On November 4, 2020, I interviewed attorney and author, Catherine Michael, of Connell, Michael, Kerr, LLP, a special education law practice with offices in Indiana and Texas (https://cmklawfirm.com). Catherine’s book, The Exceptional Parent’s Guide to Special Education, will become available on December 1, 2020 and can be pre-ordered at https://amzn.to/38euWaD.

The following is the transcript from the interview (transcribed using Otter):

Anne Zachry 00:00

First of all, thank you so much for being on this podcast with me, I don’t get to interview folks very often, and it’s always fun when I get to. And it’s always very informative, because I think having all of us who do this kind of work, you know, talking these things through out loud, and just speaking to what’s going on and how we think that’s going to affect the the students that we work for, and the families that depend on us, I just think it’s a really constructive use of time. So I really appreciate you being here. If you could, just introduce yourself and give us just your background, your history of how you’ve come into this line of work and what it is that you do now.

Catherine Michael 00:33

Oh, yeah, absolutely. So, my name is Catherine Michael. I’m the managing partner of a law firm called Connell Michael Kerr. And we work in a multitude of states and have attorneys licensed in in several states as well. And what I do is, and for the past 20 years, I’ve worked in education, law or representation of children. And, and a lot of that involves filing educational due process cases against schools, personal injury, tort actions against schools, and sometimes group homes, residential facilities, and also advocating for children with special needs, for instance, the legislatures in several states, and at a national level. And, you know, I got into this line of work. My background had been in hospital risk management. And I got into this, because we were seeing a lot of children who had really substantial issues, whether they had a diagnosis of cancer, and we’re now getting cranial radiation or having a tumor removed. And we saw how uncooperative schools were. And back then it was really quite shocking to me that we would find a school district who wouldn’t want to provide a child a homebound program or a school district that would claim that cancer is not a disability, and this child doesn’t need to be eligible.

Anne Zachry 01:51

Oh, my gosh!

Catherine Michael 01:52

That was really – Right! That was really fascinating to me, because as someone who had not worked in education, at that point, and was working with hospital systems, that was really shocking, because I think all of us believe that our procedures, tools are supposed to be very pro child, they are there to ensure educational services for children. And, you know, the first case I took was a child who had cancer, and was just really, really surprised how hard it was to get that young man a program. And thereafter started taking cases involving children who had learning disabilities, and really finding how substantial a need this was. And it had a snowball effect and has kept me in it to this day.

Anne Zachry 02:36

Well, yeah. And a lot of us come into this, who are professionals from these paths where we encounter these challenges. And we’re like, “Wait a minute, what?” And then we see how the system is constructed, how it’s been designed, and what the rules actually are. And so I would imagine coming from a medical scenario, I mean, in the medical realm, you bought insurance billing rules, and all those kinds of things until there’s somewhat of a similarity in that you’ve got this compliance standard that has to be met, in order for things to happen. And when you look at what those rules are in special education, and, you know, and you understand what the intent may have been. But then, and you and I spoke briefly of this before we started the interview, that enforcement is really the question here. So if you could speak about that, that would be …

Catherine Michael 03:29

Yeah, enforcement is a huge issue. And I think that because there is so little enforcement of the laws on the books, we’ve have found that basically schools have run amok. And so for parents who are listening, the main law is the Individuals with Disabilities Education Act, and that is a federal law, which means that every state has to follow it. They can’t have a state law that restricts any of the rights under a federal law. And every state in the United States has basically what we call “codified” that law into their own state laws, the only thing that they can do is add additional rights for parents. For instance, the state of Michigan actually extended how long the student can be in special ed. So it is age 22 under the federal law. Michigan made it 26. Other states change, for instance, when a parent requests an independent educational evaluation. California, basically has that if a parent request an independent educational evaluation, that the school gets a reasonable time to respond. Other states like Indiana say a school has to respond within 10 days. So there’s some of these minor changes in the law that are that are supposed to in some states like Indiana or Michigan, give those parents additional rights. But also the way these laws are designed, is that the only enforcers of them are parents. That means the parents are basically their own private attorneys general; that parents are the equivalent of the cops on the road with the radar to catch the speeding cars. Your State Department of Education is not going to be looking over your child’s IEP and saying, “Wow, your child has a lot of issues and they only have one goal,” or “They’re not receiving any direct speech services,” or “They’re not receiving any direct special educational services,” or “Your child shouldn’t be in a special education room all day long; that there’s something called the ‘least restrictive environment,’ which says we need, to the maximum extent we can, have them with their general education peers.’ So what I think a lot of parents don’t realize is, your State Department of Education isn’t doing that. Your federal Department of Education isn’t doing that. No one has that obligation to enforce these laws, other than the parent bringing a private action called an educational due process complaint. So schools have all of these laws under IDEA. And just to give, you know, for parent, I’m sure if if you’re listening to this podcast, you probably have a basic overview of it. But IDEA has requirements for what’s called a free appropriate education. And that basically encompasses that your child is going to have an IEP, that has challenging ambitious goals, in light of their circumstances, that has related services. Related services would be counseling, social work services, parent training, speech therapy, occupational therapy, physical therapy. The least restrictive environment: That if your child needs a one on one aide in order to be in a general education environment, they’re supposed to do that versus moving your child to a resource room. If your child needs a therapeutic day placement or residential placement, that’s also to be provided by the school. There are all sorts of procedural safeguards. If a school refuses your request, let’s say for a one on one aide, or a specialized program for dyslexia, they actually have to provide you written notice saying what data they’re relying upon to deny this, everything they’ve considered, and they have to provide this to you in writing. So there are all these laws on the books, okay. And regardless of where you live, when we say IDEA, it’s that federal law, this applies to you, and it applies to your child in a public school. And as you know, going back again, but the only enforcer of this law, the only enforcer who can actually call a school to tap on it is you as a parent and that mechanism, as I said a second ago, it’s what’s called an educational due process complaint. And that’s a complaint that is filed with your State Department of Education, a state appoints a hearing officer to determine if that program is in place. And you know, something we discussed before we started as well is that most parents have no idea that they have these rights. And that most of these laws are right now not being enforced. There are some states where there is less than one due process case a year. So when schools are developing these IEPs, being that there’s no real enforcement mechanism, other than in some states like the timeline, they have to have it a yearly meeting, we’re seeing really horrible consequences of that, I think across the states.

Anne Zachry 08:27

Well and then now that with school closures and shutdowns, that certainly hasn’t improved things at all. And so what are you seeing?

Catherine Michael 08:36

It hasn’t.

Anne Zachry 08:36

What are you seeing now, that’s different than before the shutdown started?

Catherine Michael 08:40

I think the biggest problem I’m seeing is a complete lack of services. And that is where school districts, for instance, that have gone entirely virtual, have students who are just not able to access the services, they may be so cognitively impaired, they’re not able to do a computer program

Anne Zachry 09:01

Right.

Catherine Michael 09:01

In some of those cases, I’m seeing schools basically just throw up their hands and say, “Well, you know, when we come up with a program, we’ll let you know.” And that’s really contrary to law. And there are a lot of things that parents need to be doing right now. That is one of the biggest problems. The other one is where parents whose children are getting, for instance, speech therapy. The school’s saying, “Sorry, we can’t provide that right now.” And in fact, they really can. I mean, virtual speech therapy has been done for years and it’s something that should be being done.

Anne Zachry 09:35

Right.

Catherine Michael 09:36

And then lastly, I mean, we’re seeing schools where kids are coming back to school, but we’ll have a school that that, you know, I think for good reason has a mask mandate, but they don’t understand that there are clearly going to be children who cannot wear masks, right?

Anne Zachry 09:52

Right.

Catherine Michael 09:52

They are too cognitively impaired or they have really significant health issues. And I’ve definitely seen a lot of those issues crop up, which is really quite shocking to me. Because some of these situations, you know, quite honestly, when we look at a child who for instance, has a tube down their throat, the fact that a school would even argue with a parent as to whether they’re going to try and put a mask on this child is shocking.

Anne Zachry 10:21

Right.

Catherine Michael 10:21

They’ll tell a parent that a child can’t come to school. So that I think has been another one of the really big issues.

Anne Zachry 10:28

Yeah. And we’ve what we’ve run into out here in California is it’s hit or miss, it depends on the school district as to whether they’re going to do the right thing or not. And but we have some school districts that are just flat out refusing to do any in-person services at all, under any circumstances, even though we have the governor’s order that came out in April that said that any student that required in-person services in order to continue to learn and to receive educational benefits, just as a matter of FAPE, that those in-person services still had to be provided and the people who would do it would be considered essential infrastructure workers. But we have districts saying that, “Oh, no, there’s something else that came out in July that says we don’t have to do that.” And it doesn’t say that at all. And so they’re just waiting until they get court ordered to actually do it before they’ll comply. They’re waiting for somebody to pull that trigger. They’re not willing to assume the risk. It’s a risk management decision. They don’t want to assume the liability of choosing to do it, and then have somebody gets sick and say, “You made me go to work, and then then I got COVID.” And then they’re going to turn around and sue the school district as the employer. And so what we’re seeing is that a lot of it has to do with human resources issues, and unionized employees and, you know, rightfully insisting on safe ways of getting things done, and satisfaction not being achieved at that level, which then impairs the system’s ability to carry out its mandate, because the workers it relies upon, there’s no agreement as to how they’re going to do it. Until they get court ordered, they’re just not gonna. And so that’s what we’re seeing out here. And it’s weird. And I’ve also got OCR complaints and state compliance complaints as well pending because the due process system is now so flooded that, you know, the attorneys I work with can’t file anything new until March. And so it’s like, Okay, well, we got to find other avenues to still somehow enforce all of this and a compliance investigation, or an OCR investigation has a 60 day timeline. So at least that’s something.

Catherine Michael 12:27

Yeah, well, and I think that is, again, part of the big problem, here. It’s just when we have schools that they know that the consequences to them are going to be really minimal, that’s why we’ll often see them wait for court orders versus getting creative. So when I say getting creative, we’re seeing two are not able to serve, for instance, cognitively impaired kids, they have problems where they are not able to get the personnel in and not keep them safe. They can actually pay for a private therapeutic day placement, they can offer a parent sort of what we would call a continuum of services and placements …

Anne Zachry 13:02

Right.

Catherine Michael 13:03

… which is one of the requirements of federal law. And they can actually say to a parent, look, we do not have the infrastructure right now, or we don’t have the ability to serve this child, here are four or five private placements that we can contract with, if that’s something you’re interested in. So and we see that happen in some places, and we don’t see it happen in others.

Anne Zachry 13:22

We’re seeing that also with non-public agencies being able to provide in-home services like behavioral services.

Catherine Michael 13:28

Yeah.

Anne Zachry 13:28

Yeah, same thing.

Catherine Michael 13:30

Yeah, I’m actually a big fan of that happening. When I see school districts that are really willing to think outside of the box to say, “Well, we have an absolute obligation to serve these kids. How do we do it?” Right? Where they’re actually looking at it more along the lines of: “This is our job, this is our role, how do we perform it, even if we don’t have the personnel right now?”

Anne Zachry 13:52

Right.

Catherine Michael 13:52

And so when I, certainly when I see school districts going above and beyond like that, and situations where, you know, you can see how difficult it is. I mean, I’m looking at those districts and saying, you know, at least they’re making these attempts, but, you know, the, the problem we see over much of the country is school districts basically saying if a parent, if, after all this is done, brings a due process, our worst case scenario is we’re just going to have to provide compensatory education. So I’m seeing some school districts, really, you know, as I said a moment ago, not provide anything.

Anne Zachry 14:29

Right.

Catherine Michael 14:29

And so, you know, if you’re a parent who’s listening to this, and you’re saying, you know, my school district may be providing part of the program, or not any of it. I mean, the thing you need to be doing right now is documenting it.

Anne Zachry 14:41

Yes!

Catherine Michael 14:42

Because you are absolutely going to have a claim for those compensatory hours that your child should have been getting. So if your IEP had your child receiving 124 minutes a week of what we would call sort of direct special educational services like we would expect to see it you’re talking about a child with a specific learning disability, who is getting some of that one on one reading intervention or math intervention, those are the minutes that are going to be ordered. If you have a situation where your child’s not receiving that, or they were in a resource room, and we’re talking about full time special ed placement, they’re not able to access a computer, what you’re going to want to do is just really document those hours that you’re missing. Email the school, your child’s school, and ask, you know, again, if your child’s not receiving anything, what options are available? You know, if they don’t have the infrastructure, are they going to offer a private therapeutic day placement or a home based placement at this point? And that’s, you know, sending it for instance, a registered behavior technician, or if your child has autism, a BCBA, or you know, another individual who’s trained in that, you know, behavior modification into the home to work on the child’s behavioral goals, social skills goals, academic goals. What is the school able to do at this point? And you’re certainly going to want to ask those questions. And you’re going to want to push because, again, it’s their absolute duty to be providing this right now. To the extent that they are unable, there are rural areas where, you know, there are no ABA centers are out there …

Anne Zachry 16:14

Right.

Catherine Michael 16:15

… no spec ial day placements, there are no private placements, quite honestly. And we have schools that are saying, you know, “We don’t have enough staff,” you know? It’s really a very, very problematic situation for families in those places. And that’s where the parent just really needs to be documenting to the best extent they can you know, what skills their child is losing how many minutes that their child isn’t receiving, what they’re doing, any costs that they are right now incurring. Like for instance, for parents who are having to go out and buy educational items, these are all things that you’re going to want to keep track of as a parent so that as things return to normal, you can sit down initially with your school at an IEP meeting and say, we need to plan for the compensatory services, number one. Number two, here are the costs that I had to privately pay that I’m asking to be reimbursed for,

Anne Zachry 17:05

Right! Well, and I don’t know how other states are doing it, but in California, one of the things that we had a Senate bill pass over the summer, that now requires all IEPs to have a contingency plan and emergency plan for his schools shut down for emergency reasons for 10 or more days. And so now, and hindsight being 2020, obviously, that should something else ever arise, like another pandemic, or whatever that would, or, you know, a natural disaster that would require a school closure for 10 or more days, that there is already a backup plan of what to do for each kid …

Catherine Michael 17:40

Yes.

Anne Zachry 17:40

… on IEP. And so I don’t know that other states have codified anything like that. But California has. And I think that’s very valuable. And the same body of law that produced that I believe, also produced a requirement that there’s going to have to be an analysis of how much compensatory education every special ed kid in California is due, because it’s assumed that everybody will have suffered in some kind of way, and that everybody will have …

Catherine Michael 18:04

Yeah.

Anne Zachry 18:04

… lost services. And so it’s, the IEP teams are now legally beholden to calculate that, once things, you know, once the shutdown is over. That …

Catherine Michael 18:12

Yeah.

Anne Zachry 18:12

… varies from community to community. And I, we now have like, I’m in Ventura County, where districts are not intending to open until January, at the soonest. And then you know, you go down into other counties, and they’ve already got campuses partially opened down in Orange County. And so and some campuses are reopening for their most severely impacted students who desperately need that in-person support. And so the families have to sign all kinds of waivers and everything, but then they can go back and they’ve got all of these empty classrooms that they can spread everybody out. Because not it’s just a small number of students. And then those kids can get that individualized support. But that is like, you know, how much of this was working on social skills? And if they’re all spread apart, can we really do that? You know, and so it’s, it’s still the challenge of how do we work on the goals. And what I’ve seen too, is some kind of distance learning program where, you know, the parents are expected to be the one-on-one aide and help their students login. And they do some kind of something on the internet, but it doesn’t have anything to do with anybody’s goals. It’s just something to do. It’s just to give them a sense of routine in the absence of, you know, an actual plan, and then they get very confused. And then eventually, the goals get worked in because enough people you know, make a fuss about it, then it starts to happen. And now you switched everything up on them again. Now, the instruction is a whole new novel experience, and you’re transitioning them again, into something new that is unfamiliar. And so it just seems to me that it’s very disruptive. And it’s disheartening to see that there’s this little coordination. I mean, as many milestones have been achieved, and as many things that have been accomplished with making some of the system work, this piece of it falling down is a real disappointment, you know? And …

Catherine Michael 19:53

Yeah!

Anne Zachry 19:53

… and it’s disheartening, but I think that parents need to know that there are people like you and me out there who understand it, and we’re trying to fight it, we’re trying to help them. And it’s not a lost cause; that there is help out there. If you could share about your practice, once again, that would be very helpful.

Catherine Michael 20:12

Yeah, so my law firm is Connell, Michael, Kerr, and I am licensed in Michigan, Indiana, and Texas. And our website is www.cmklawfirm.com, and I also have recently, and I believe it’s due out either in December or January, I’m not sure on the date. But I do know that we’re having pre-orders. That’s the Exceptional Parent’s Guide to Special Education, where I basically have, you know, put all of my advice on how parents should navigate this system in one place. Everything that I go over with parents in consultations, how the process works, I’ve put that together and created that as a book. And so that will be due out, again, it’s either in December or January, but parents can get it through Amazon, Kindle, I believe Barnes and Noble, a couple of the others. But I know that should be available shortly. And I’ll send a link for that as well. (Note: It will become available on December 1, 2020, at https://amzn.to/38euWaD.)

Anne Zachry 21:08

Very cool. Yeah, we’ll include the link with our post so that people can access that. That’s a good thing to know.

Catherine Michael 21:14

Yeah. Because I, you know, I think the thing that parents need to remember is that they actually have power. When, you know, when I use the term, private attorney general, that parents are basically acting as though, you know, that is the main message I want to impart to families is that most accountability is going to come from families standing up together and saying,”No, we are entitled to appropriate services for our children,” and doing their research and coming to unders tand the system and asking for the things they’re supposed to be getting.

Anne Zachry 21:47

Right.

Catherine Michael 21:47

And it’s only by asking for it, and schools really being held accountable that we’re going going to see the system change. And I think a lot of parents, right, and this is all of us, right? It’s difficult to challenge people that we want to like us and parents often want the teachers to like them, they want school staff to like them. And most people who go into teaching are very, very good people, but they’re not taught the education laws, they’re not …

Anne Zachry 22:11

Exactly.

Catherine Michael 22:12

… in a lot of situations, we find, you know, teachers don’t know how to design the school for an IEP, they don’t … You know, I had a teacher in a due process hearing last week, they they didn’t know that parent training, or counseling could even be part of an IEP. So it’s really important for parents to take the horse by the reins, and learn how to navigate the system and start asking these things in a way that’s diplomatic and kind. But at the same time is assertive enough that your child is going to get what they need, because quite honestly, you are your child’s only advocate in the system.

Anne Zachry 22:48

Right.

Catherine Michael 22:48

And unless you’re asking for these things, the schools simply aren’t going to provide them. And in many, many situations,

Anne Zachry 22:55

it’s just a sad reality of it. But I mean, this also goes to the fact that in a democracy, we’re of the people, for the people, and by the people, and the parents are the people, the students are the people and we shouldn’t be afraid to take ownership of that responsibility. It’s what we all agreed we wanted to live under. That’s …

Catherine Michael 23:13

Yeah.

Anne Zachry 23:13

… the model we’ve chosen. And so I think, for me, what makes me upset most about the way it’s designed, it’s not just that it forces parents into litigation, because that’s what the rules require, in order to resolve the dispute. It’s the attitude that parents get from the school district personnel when they actually exercise that right. And the “How dare you?” and “Oh, you think you’re …” you know, whatever. And all of a sudden, the parent becomes the bad guy for simply exercising a right and following the rules, because that’s the only mechanism available to them, not because they want to. Nobody wants to do that. But if they do, you know, as someone who works with families, if somebody comes to me and says, “I cannot wait to go to court,” I’m like, “Well, okay, I hope you find somebody to help you with that, because it’s not going to be me,” You know, it’s that you shouldn’t be eager to go to court. It should be the last resort. And so when parents are forced into that corner, and that’s the only option they have left, and they exercise that right, and then they catch grief for it, like somehow they’re the bad guy, I think that’s what bothers me the most. Because it’s like you …

Catherine Michael 24:18

Yeah.

Anne Zachry 24:18

… said, you know, that the parents can be made out as, “Oh, they’re just this this disgruntled person and they just aren’t happy with anything. They’re sad about being the parent of a special needs child.” I’ve heard that one a lot. “They’re having a hard time coping and they they’re angry and they need someone to take it out on, so they’re suing the school district.” No, you broke the law and you harmed their child. That’s why they’re suing you. You know, it’s frustrating.

Catherine Michael 24:46

Yeah, and, to that end, like, I want, you know, schools as well as parents to I you know, I would so love if we could even stop thinking of due process as litigation or suing or something like that, because these parents cannot get damages under IDEA claims.

Anne Zachry 25:04

Exactly.

Catherine Michael 25:05

What you can get, right? You can recover your attorneys fees. But in these cases, I mean, if we look at them in their most simplistic nature, it’s simply the parents asking their state Department of Education to appoint an independent hearing officer to make a decision as to the appropriateness of their child’s program.

Anne Zachry 25:23

Right.

Catherine Michael 25:23

A parent doesn’t need, although I certainly wouldn’t recommend it, but a parent doesn’t need an attorney. So, you know, I will often hear from schools that, you know, this is the litigious parent who filed a suit. And I’m thinking, number one, this person hasn’t filed a suit against you. Right? A suit, you know, traditionally is a claim we would file in civil or federal court.

Anne Zachry 25:46

Right.

Catherine Michael 25:47

This is an administrative action that they filed with an administrative agency. It’s not even … so, and then we hear, you know, “a litigious parent.” Parent’s not asking for money, you know. They may be asking for what we call an “in lieu of FAPE” type of agreement where they can actually get the funds to place their child in an appropriate program.

Anne Zachry 26:05

Right.

Catherine Michael 26:06

But I think that is a mindset that we really need to have get schools over and also get parents again, thinking that if you have a problem with Social Security, or you had a problem with your child’s Medicaid, you file an administrative action to get that corrected. Right? You file with, you know, your federal Social Security office, “Here, I need to get this adjudicated,” or somebody who’s disabled. We don’t think about it the same way.

Anne Zachry 26:31

No, not at all.

Catherine Michael 26:32

I think if we could … right? And so to me, that has always been fascinating as somebody who does this, when, you know, I have one that’s in a hearing right now, where the, you know, the parents, quite honestly only asking for an appropriate IEP, and then assorted related services for her child. And now, you know, when the school’s attorney is speaking to us, they’re saying, you know, this is simply a litigious parent. And I’m thinking, you know, she’s not asking for a dollar.

Anne Zachry 27:00

Right.

Catherine Michael 27:00

Just write an appropriate program. So I really want to even reframe how parents think about these things. Again, schools are basically performing a government function.

Anne Zachry 27:14

Yep.

Catherine Michael 27:14

When we ask for the enforcement of these laws, it’s an administrative action. And you’re asking, you know, someone from your state simply to make that decision. Certainly, they can be appealed to federal court. And there’s all you know, all of the things that you and I often see.

Anne Zachry 27:31

Yeah. Which Yeah, I’ve gone all the way to the Ninth Circuit on some of these things and it’s just like, “Are you kidding me?” And something that you had said before we got started, as well as that how much money school districts are sometimes willing to throw in attorneys that they would never throw at services, I mean, hundreds of thousands of dollars in legal fees to fight over a $7500 education service.

Catherine Michael 27:50

Yeah. And you know, I’ve even seen that when a parent requests an independent educational evaluation. In most states, those can go for around $3500. Some states that we’re looking at California and New York, it can be higher. So I’ve seen schools go through an entire due process, arguing that their evaluation is appropriate, where they spent triple, quadruple, what it would have cost them to provide the parents the evaluation. And when you look at that, you’re really what you’re seeing is a school district saying, “We want to make this process so hard on parents that they don’t even bother to ask.” And they talk to their friends and they’re like, “Yeah, this is what happened.” And that’s not the role of a government entity, right? We shouldn’t have government entities making it so difficult for individuals to get their, you know, their legal rights met.

Anne Zachry 28:23

Right. Right.

Catherine Michael 28:38

They don’t even want to start that process. And that’s why I think it’s really important for parents to feel empowered, and to realize that what they’re asking for is supposed to already be being provided to their child. And again, it becomes their job to enforce that. And you can do so in a diplomatic way.

Anne Zachry 28:55

Exactly.

Catherine Michael 28:56

There are a lot of you know, yeah. And there are a lot of things you can do even outside of due process. But I don’t want parents to be afraid of due process.

Anne Zachry 29:03

Right.

Catherine Michael 29:03

And, I want to reframe their thinking on that topic.

Anne Zachry 29:07

I think that’s a really healthy perspective. I wish we could reframe the thinking of the folks from the school district who come in and deliberately try to make it toxic in those instances where they do. And you know, when it isn’t always that case, you’re right. I have been in situations where we’ve had to file for due process. And it’s almost one of these things where everybody in the IEP team knows that it was coming, and nobody’s surprised by it. And they’re waiting to see what happens. And it’s almost like the administration is hoping the parent will file because then they can go to the school board and say, “Look, now will you listen to me?” And because, sometimes it’s not that the department doesn’t want to do it, it’s that their hands are tied by, you know, whoever holds the purse strings, who’s not part of the IEP process, even though the team is the one vested with the authority to make those decisions. So, the politics that are going on behind the scenes become a toxifying effect. And …

Catherine Michael 29:59

Right.

Anne Zachry 29:59

… then you Have the attorneys that these individuals will hire and certain individuals, you know, birds of a feather flock together, and you’ll find people who are like minded in their view of these things. And I know that for from what I’ve seen the socioeconomic status of the community where the school district is, can have an influence over whether they will comply or not. In a school district where they don’t have the money to throw at lawyers, they’ll go ahead and pay for the service, they’re not going to fight over it …

Catherine Michael 30:27

Yeah.

Anne Zachry 30:27

… because they can’t afford to. But you get into an affluent community, especially when you’re talking Southern California where you got these little pockets of nouveau riche and their big McMansions. And they’re feeling all special because they have money and the school district people will tell them, “Oh, well, you don’t want to go through public special education services. That’s like a welfare service. You would do much better if you pay privately for the services yourself. You’ll get much better results than what we can give you because ours is publicly funded.” And so they play that …

Catherine Michael 30:58

Yeah.

Anne Zachry 30:58

… that mind trip on these wealthy parents whose identities are all wrapped up in their their newly accomplished wealth, and they play on that and these parents are taken for a ride, because then these parents are paying out of pocket hundreds of thousands of dollars for all of these specialists who were hovering, like vultures just waiting because they know it’s coming. So you’ve got, you know, you’ve got all of these parties that are financially invested in enabling that mechanism to play out the way that it does. And then you have parents who suddenly realize after, you know, they’ve broken the bank, and they don’t have all that money anymore, because it went all to private school and residential placement costs and things and to come to find out that they could have gotten all of that from the school district. But there’s …

Catherine Michael 31:40

Yeah.

Anne Zachry 31:40

… only a two year statute of limitations and they’ve been paying out of pocket for the last 10 years. And so not until they’re bankrupted by it that they realize the error in their judgment, and then they can’t go back and fully recover. And it just there’s all of these different games being played by people who seem to be similarly motivated to not serve, while taking public dollars to hold a public service position. And I think that this is as much a taxpayer issue as it is a parent issue, because like you said, we’ve already paid for these services to be provided. Those are our tax dollars. And in those are the laws that our Representatives passed in order to provide for these children. And yet, this is what we have instead. And so I think …

Catherine Michael 32:22

Yeah.

Anne Zachry 32:22

… that one of the parent advocates that I met a few years ago said she went up to Sacramento with a group of parents and sat down with state assembly members or state Senate, I’m not sure who all she met with. It was state officials, representatives. And said, you know, “When you take into account all of the people in California who have disabilities, and their immediate family members, like their parents, or you know, a spouse, do you consider them a constituency?” And he said, “No, the number is too small.” And she said, “Well, okay, what about all the people who are employed to support all of these people with disabilities and their families and their extended families? When you add all those people in, does that become a constituency to you?” And he said, “Yes …”

Catherine Michael 33:08

Yeah.

Anne Zachry 33:08

“… at that point, now you’re talking about a significant number of people.” And so what that really communicates is all of this divisiveness that we’ve been seeing in our culture where, you know, we’ve got people being pitted against each other for different ways of thinking about things and the things that make them unique from each other. And disability is no stranger to that experience. And what we’re starting to realize is that the people who are trying to divide us are a minority. And they’re easily identified, we all have a common group of individuals who are all trying to pit us against each other and turn us into special interest groups, when really we’re just the majority. And if we all …

Catherine Michael 33:49

Yeah.

Anne Zachry 33:49

… weave ourselves together and collectively advocate for each other, then we’re a constituency. And I think that …

Catherine Michael 33:57

Yeah.

Anne Zachry 33:57

… that is where we have to start thinking about these things now that it’s not, “Oh, my disability rights versus your LGBTQ+ rights.” It’s not my “My race rights versus your gender rights.” You know, it’s not a “versus.” It’s no, everybody. Everybody has equal rights. And that’s the whole point.

Catherine Michael 34:16

Yeah.

Anne Zachry 34:16

And so I think that our dialogue needs to shift in that direction. I know that I had this conversation in an IEP meeting the other day with a team, I had to file an OCR complaint. I’m like, “Look, this pandemic is not the apocalypse, you know? Zombies are not at the door.”

Catherine Michael 34:32

Right.

Anne Zachry 34:32

“Democracy has not fallen, the rule of law still applies. And at no point did public health usurp civil rights, they are equally important. So what are you guys gonna do?” And they’re just like “Uhhh!” because they don’t know. I mean, but they understood why I filed a complaint. They weren’t mad at me. They’re probably … they’re actually they’re like waiting to see what comes of it because maybe now they’ll be given permission to do their jobs. You know?

Catherine Michael 34:56

Right.

Anne Zachry 34:56

Nobody was angry about it. It was like “Okay, well, yeah,. That logically makes sense. We’ll just have to see what happens.” And so I’m not necessarily, in my situations … and of course, I have relationships with a lot of these people, because I see the same people in IEP meetings for different kids over the span of decades. So we all know each other. So it’s not like …

Catherine Michael 35:17

Yeah.

Anne Zachry 35:17

… you know, I’m going into a novel situation, and then some stranger coming in and telling them what to do. Because that can be, you know, people can become defensive and adversarial when that happens. So I have rapport, but, you know, even still, you know, the fact that I can say something like that, and everybody’s like, “Yeah, you know what, you’re right. We still are not empowered to do what you’re asking us to do.” And so that that, to me, is very frustrating, because I know that there’s people who want to do the right thing, and they can’t; they’re not being allowed to.

Catherine Michael 35:45

Yeah.

Anne Zachry 35:46

And I think that parents need to understand that too, that, you know, not everybody’s the enemy, but you got to be paying real close attention these days. I mean, would you agree, I mean, the parents just need to be …

Catherine Michael 35:56

I would.

Anne Zachry 35:56

… very discerning about who they can trust?

Catherine Michael 35:58

Well, absolutely. I think it’s, again, it’s being discerning. And it’s also it’s being educated as to what your child needs are, what you’re asking for. And then also, you know, again, understanding that you are going to be the only one who really has your child’s true best interests at heart. That’s not to say that there aren’t, you know, within school systems there are really dedicated teachers, dedicated administrators who are doing their very, very best to ensure children are being educated appropriately. But at the end of the day, and I don’t necessarily like that expression, but it really does come down to, you are always going to know your child best. And it is going to be up to you to enforce these laws.

Anne Zachry 36:43

Right.

Catherine Michael 36:43

You know, you may have a great teacher one year and not another. And again, the school’s interest isn’t going to be the same as yours, right? Theirs is going to be on their budgeting, the union, you know, everything going on, your interest is going to be on “Is my child getting an appropriate program?”

Anne Zachry 36:51

Exactly. Right. And, I mean, in terms of checks and balances, that’s why the parents are such an important part of the team, and are afforded so many rights and the protected right to meaningful parent participation and …

Catherine Michael 37:11

Right!

Anne Zachry 37:12

… informed consent. I mean, all of those privileges and rights are there, because that’s meant to be a check and balance against the rest of the system. And so, you know, if they if the parents are being bamboozled, and they are signing documents that they don’t actually understand, then those enforceable rights are not being honored. And, you know, it’s parents have to understand that they have recourse and they need to educate themselves as to what what that is.

Catherine Michael 37:36

Right.

Anne Zachry 37:36

And ask! I mean, my favorite thing is when parents say, “Okay, well, what are my rights under this circumstance?” and put it back on the school people … … to explain what their rights are, you know? And I think that that’s a good strategy, because it is the burden of the school district to explain to parents what their rights are. They’re supposed to be able to do that. And so you know, if they’ve put you the parent on the spot, the parents should feel comfortable saying, “Well, you know, what, I need to turn this around to put you on the spot for a minute, because I don’t understand my right. And I’m not sure what I can do here.” If you’re savvy enough to know, in some states, you know, how the rules play out are different. In California, all you have to do is give 24 hour written notice, minimum, and you can audio record your child’s IEP as a parent. You can’t video record, but you can audio record, and the school district can’t say no, but they also have to record as well so that there’s a backup copy. And you know …

Catherine Michael 37:42

Yes!

Anne Zachry 38:23

… just for authenticity reasons. So different states have different rules about audio recording, but, you know, I audio record every IEP meeting. One, because I have ADHD myself, and I don’t want to miss anything. And so it’s just a … it’s more of a safety net, because I very rarely have to go back and listen for …

Catherine Michael 38:23

Yeah. Yeah.

Anne Zachry 38:38

… my own account. But just to know that I can make me less anxious during the meeting, but also because, you know … … it ends up getting introduced into evidence if we do have to go to a due process hearing. And it’s been a very powerful tool.

Catherine Michael 38:44

Well, yeah. Right. And you can be clear as to what you asked for, why you asked for it, what the school’s response was.

Anne Zachry 38:58

Exactly,

Catherine Michael 38:59

I think that can be extremely helpful.

Anne Zachry 39:01

And if, you know, when you go into an IEP meeting and you do have the, you know, you’ve legally made it okay to audio record – given written notice or whatever is required – and you’re doing it lawfully, and then you go in and say, “I don’t understand my rights under the circumstance, please explain them to me,” and then the explanation they give you is either going to be a good one, or it’s going to be a bad one. And if it’s a bad one … … you know, the backup, you know, it’s like, “Okay, well, I didn’t get the right answer, but I got proof that they don’t know what they’re talking about. And I’m not crazy.” And so it becomes evidence and I think the parents and, certainly as an advocate, when I go into the to the IEP process, I’m trying to solve the problem for real in the moment but I’m also making the record along the way in case it doesn’t get resolved …

Catherine Michael 39:24

Yeah. Right.

Anne Zachry 39:28

… and so that by the time we arrive at due process, the trail … the evidence trail is clear. If when they say no their explanations are, you know, are whatever they are. And, going back to what you had said earlier about prior written notice one of the things that I’ve noticed out here is that I would say, a good third of the time when I get a prior written notice, in response to something I’ve submitted for a family, it won’t make a lick of sense. It will say prior written notice according to 300.503, blah, blah, blah …

Catherine Michael 40:14

Right.

Anne Zachry 40:14

… and have all that legalese at the top of it, and then they … it’s like a form and they’ll populate the form with a bunch of gibberish that’s just nonsense. It doesn’t even explain why they said, “No.” There’s no real explanation. I’m like, “Okay, well go ahead and make the record that this is what you’re sending out on a PWN form, and this is what you’re going to represent as PWN,” … because substantively, it is embarrassing. And just because you put “PWN” at the top, and you cite the code that you’re supposed to be following, the fact that you didn’t is reflected the document itself. And it just, it blows my mind what people will put into writing because they think they’re so clever. And it’s like, “Okay.” And so one of the things that I think is really valuable, that’s helpful for parents to know, too, is that the regulations, it’s 34 CFR section 300.320(a)(4) mandates the application of the peer reviewed research to the design and delivery of special education. When you have a bad IEP, you can say, “I want to understand the science that underpins this IEP. What peer reviewed research did you rely on to inform …”

Catherine Michael 40:34

Yeah.

Anne Zachry 41:20

… you know, and of course, they don’t have anything. And then when I ask for something specific, and I know, I can reasonably anticipate that they’re going to balk at it, because it’s something they’ve not done before. And it’s going to require them to create something new. I will cite the science that backs up the request that I am making and say specifically, the regulations require you to apply the peer reviewed research to the degree that it’s practicable. So if you’re not going to do this, when you send your prior written notice, please explain what it is about the science that is not practicable.

Catherine Michael 41:20

Yeah. Yeah.

Anne Zachry 41:23

And then they’re, they’re stumped, because they don’t know how to reply to that. And again, it goes back to the fact that they don’t actually have access to the peer reviewed research. I’ll go ahead and …

Catherine Michael 42:02

Yeah.

Anne Zachry 42:02

… spend $70 on an article just to make my point, because I can …

Catherine Michael 42:06

Yeah.

Anne Zachry 42:06

… you know, but I shouldn’t have to do that. And that’s the problem, is that we have this paywall between our educators and the science that would tell them what to do. And what is the politics behind that? Why is there a paywall between our educators and the research that will tell them how to teach our kids right? How is that not part of the public domain? Why do teachers not have access to that? And then, especially when you have a legal mandate that requires it, you know?

Catherine Michael 42:31

Oh yeah, and …

Anne Zachry 42:32

It blows my mind.

Catherine Michael 42:34

It goes to the fact that, yeah, that because the laws are not enforced, right? We’re just not seeing, for instance, when we look at health care, right, we have, you know, standards of care, best practices, we see checklists for everything with the doctors getting weekly reports on different new procedures, medications, right? We don’t see that in education, because, again, there’s so little penalty. We’re not seeing teachers, sort of, you know, given a weekly mailer, you know, here are some of the programs that we’re seeing coming out. Here are some of the best practices for working with a specific learning disability, you know, can you update off on how you’re implementing this in your classroom? We don’t see that because, again, there’s so little importance level. Yeah, I really haven’t felt the need to do that.

Anne Zachry 43:23

Yeah, well, and I’m thinking we’re overdue for a reauthorization of the IDEA. And one of the things that I would like to see in there is beefing up of that enforcement arm because they’re supposed to be what 10 year audits or something like that? That we have some kind of audit procedure in California that every once in a while somebody pulls the short straw and ends up getting audited. And of course, every time they go through there and examine all the IEPs, it’s just a disaster, but then nothing ever gets fixed.

Catherine Michael 43:48

Right.

Anne Zachry 43:48

And so it doesn’t change anything. It’s like, Oh, they just documented that it’s a disaster and moved on to the next one. And nothing got rectified. And we need to speak to that. I mean, is we’re looking at all of these broken systems that are just cracked open and expose raw and wide for the whole world to see now that there’s no covering up that our social programs are flawed, and that we need to overhaul them. And we need to bring them kicking and screaming into the 21st century with best practices and not just best practices in teaching, but in best practices in operational standards, and efficiency, and … … and security and privacy. And I know I worked in IT for a few years in these huge enterprise class computing environments like Walmart and Sanyo, and Volkswagen and all of these big huge computing environments, where you have these global wide area networks in these supply chain automated pieces. Back in the day, I’m talking like 25-30 years ago, this technology has been around for a long time. And if you look at the degrees of efficiency, and the cost savings and the reduction in overhead that is experienced by the industries that adopt all of this ISO standards and these automated supply chain things and and the internal and the way they automate their internal business operations, that California is starting to head in that direction with respect to individualized person centered planning. That there is a pilot program that’s being developed. And I don’t know when exactly it’s going to be deployed. But I know Ventura County as part of it, where, whether you’re Department of Rehab, or you’re special ed, or you’re county mental health, or you’re welfare, or you’re food stamps, or you’re Medicaid, or whatever, it’s one individualized plan, one caseworker, and your plan calls out to all the different funding sources. So the consumer is not having to chase after the funding, the funding is following the consumer through a single individualized plan, which is only common sense. But it was only achievable by marrying all of these computer systems together, that all of these disparate agencies were working autonomously with, and making them able to talk to each other. And so now we’re getting to the point where we can stitch all of our our computing resources together to create this inter woven supply chain so that we can streamline how we deliver public services and do it more cost effectively. But then what that also means is that there are no there are no dark shadows to hide in where funds can be misappropriated. There will be such a stringent degree of accountability that the cronyism and the back scratching that has gone on will no longer be enabled. It won’t be possible. And so that also will free up a lot of resources. And that is another aspect of increasing the efficiency and the fiscal responsibility of the system and the fiscal management of it. And so there are people who financially benefit from the system being antiquated and broken right now. And they don’t want those kinds of changes coming in. Because there goes all of their opportunities to exploit. We’re starting to see that public service is going through this transformation that private industry went through when this happened decades ago, as these technologies come in. And as the public pushes for a greater accountability. And as we repair and we overhaul our systems, we’re going to be using the most modern tools we have. And so I think that we can be encouraged that the future does hold a lot of potential for a lot of corrective action, and a lot of prevention of things like this happening again in the future. But we are not there yet. And I think it takes … it’s going to take all of us pushing for those reforms. Because as much as each parent needs to advocate for their child on a child by child basis, and not be afraid of the due process mechanisms, if that’s what it takes, you know, but not think that it’s like, you know, the panacea, like it’s going solve every problem, we also need to be pushing collectively as a community of people for reforms that will fix the system in a way where these are no longer the problems we have to deal with. And that we have to repair the broken system, not only on a kid by kid basis, but we also have to make it better than it was in the first place. And so that the next time catastrophe comes, we’re better prepared to roll with it. I mean, sadly enough, this was long overdue, where the system needed to be confronted on its failures. But I think that parents can take hope that we’re part of history right now we’re part of fixing it, we’re part of making this better for our kids with special needs, because all of its going to have to be reformed, we can’t just tape it back together and go back to the way it was. So I think that …

Catherine Michael 44:23

Yeah. Right.

Anne Zachry 44:54

… you know, there’s, there’s a lot of encouragement in what’s going on here, there’s a lot of opportunity, and we don’t need to be so terrified of the changes that are coming. And we need to really embrace them, because it’s our opportunity to make it better, I think. And it’s going to take people like you and me going in there and one kid at a time, you know, saying, “No, this is … these are the rules, and this is how they apply to this one child. And this is …” ” … the individualized program, and and the individual person matters. You know, it’s like every vote matters, every child matters. And whether that child has a disability or not, should not be a defining criteria of whether that individual matters or not, it shouldn’t even be a question.

Catherine Michael 48:39

Right! Yeah.

Anne Zachry 48:55

And so I think that what we’re doing is a very powerful thing. This is a very prescient area of civil rights law right now. And, you know, I think that, you know, regardless of how things play out with what other people do, what people like you and I are doing, we’re on the right side of history with this, you know? We’re enforcing civil rights. We’re …

Catherine Michael 49:13

Yeah.

Anne Zachry 49:13

… we’re enforcing democracy. It’s we are of the people, for the people by the people doing the work to make sure the people are protected. And I think that families need to understand that they’re not alone, that there are folks like that, like us out there. And we’re not that rare, you know, and the fact that you’re licensed in multiple states goes to the fact that you recognize the degree to which there’s not enough representation in some places, and that you’re making it …

Catherine Michael 49:36

Yeah.

Anne Zachry 49:36

… happen anyway. And so that’s really powerful. I think the parents need to … and I know that there are other attorneys who are licensed in multiple states as well. One of the attorneys I work with here in California is also licensed in Alaska. And let me tell you, going out into the middle of Alaska in the middle of nowhere … … and enforcing special ad law is not an easy thing to do. You’re coming in on a like a bush plane and landing in, you know, somebody field, you know, and going to a one room …

Catherine Michael 49:53

Yeah! Right.

Anne Zachry 50:04

… school house to say,” Okay, this kid needs speech and language. How are you gonna make it happen?” and they still got to do it. And so, you know …

Catherine Michael 50:09

Yeah.

Anne Zachry 50:09

… parents need to understand that even under the most bizarre and difficult circumstances it can be made to happen. There’s always a way.

Catherine Michael 50:17

Right.

Anne Zachry 50:17

You know, and that it’s not a hopeless situation. So I think that talking about this with you has been very enlightening and very encouraging. And I think that you’ve given us a lot of really good information. I do want to remind everybody that I’m going to include a link to your book with all of our, you know, the stuff below on the … because what we’ll do is we we do the podcast, but we also do a corresponding text only post …

Catherine Michael 50:39

Great!

Anne Zachry 50:40

That way, all the links for everything are embedded in the transcript …

Catherine Michael 50:44

Yeah.

Anne Zachry 50:44

… so we’ll have all of that and then …

Catherine Michael 50:47

Oh, that would be fantastic!

Anne Zachry 50:49

Yeah, and that way folks know how to get ahold of you. And this has been a really good discussion, I really appreciate you doing this with me.

Catherine Michael 50:56

You know, you’ve done a great job, as well, at trying to keep parents aware of their rights and helping them feel empowered. And I think that’s the biggest thing that they need to know is that they have a lot of power in their hands. They just need to know that there are lots of us on their side trying to help them along the way.

Anne Zachry 51:13

Right. And it means the world to us to be able to do it. It’s such an honor to be able to be part of making somebody’s life something that you know that they’re they’re happy and they’re fulfilled and they’re not living in misery …

Catherine Michael 51:26

Yes!

Anne Zachry 51:27

… or in crisis, you know, that that we can help people turn those kinds of corners with the kind of work that we do. I mean, it’s an honorable thing that we do and I’m proud of what we do. So thank you, and thank you for doing this and for sharing your information with us and hopefully we’ll get to do something like this with you again soon.

Catherine Michael 51:44

Yeah, I would love it. And thank you again, so much and for all that you do.

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Fascist Trends in Special Education Non-Compliance

Photo credit: Gilbert Mercier

“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)
  1. 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:

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.