Interview of George Bailey, President of ZPods


Transcript of Interview:

Anne Zachry 0:00
Welcome to “Making Special Education Actually Work,” an online publication presented in blog in podcast form by KPS4Parents. As an added benefit to our subscribers and visitors to our site, we’re making podcast versions of our text-only blog articles so that you can get the information you need on the go by downloading and listening at your convenience. We also occasionally conduct discussions with guest speakers via our podcast and transcribe the audio into text for our followers who prefer to read the content on our blog. Where the use of visual aids legal citations and references to other websites are used to better illustrate our points and help you understand the information, these tools appear in the text-only portion of the blog post of which this podcast is a part. You will hear a distinctive sound [bell sound] during this podcast whenever reference is made to content that includes a link to another article, website, or download. Please refer back to the original blog article to access these resources.

Anne Zachry 0:58
Today is March 31 2022. This post in podcast is titled, “Interview of George Bailey, president of ZPods.” In this podcast, which was originally recorded on March 23 2022, George and I discuss the impact of sleep disorders and related conditions that interfere with children’s access to education and the research being done into his company’s sleep solutions for children with autism, sensory integration disorders, insomnia, anxiety, and other disorders that can negatively impact their sleep quality.

George Bailey 1:29
Hi, I’m George Bailey, and I’m president of ZPods. We’re a startup in St. Louis, and we are developing sensory-friendly beds for autistic children and others who have severe sleep problems that are caused by sensory issues. So, our goal is to help out as many of these kids as possible. We enjoy it … and, uh, yeah.

Anne Zachry 1:54
That’s very cool. And I know that when I was emailing with you guys back and forth, when we were coordinating all of this, you know, my first question was what kind of peer reviewed research do you have behind what you’re doing? Are you doing any kind of studies? And, I understand that, not only are you … because you were just telling me that you’ve got a regional center here in California that’s already funded your product for one of its consumers, and they’re not going to just jump on something unless there’s evidence to back it up. But I know that you guys are also participating in some evidence … some studies and whatnot to collect the hard data that speaks to not just whether or not it’s effective, but what makes it effective. How is it effective? And what is the science that underpins what it is that you’re doing? And so I was hoping to get more information about that from you guys, in terms of what’s … what’s the research currently being done on the efficacy of your solution?

George Bailey 2:44
It’s such a good question. And, you know, I was just telling somebody earlier that one of the reasons why it took us a while to get around to really focusing on autism … we were thinking about, like, you know, “Where we should go?” … is because when people would tell us, you know, look at autism, early on, as we were trying to find an application for sleep pods that were great. We were bringing it from China, I balked at it. I’m a father of five. And I have two kids on the spectrum. And I thought like, “Ah, come on guys,” … like, parents of autistic children get all sorts of stuff.

Anne Zachry 3:19
Oh, yeah, for sure.

George Bailey 3:20
… business. Yeah. I don’t want business on playing on people’s hopes and stuff like that. And so I, initially when I approached him, and said, “Okay, I want to take this serious, because we’re getting that feedback that says we should do this.” But I started talking to experts, and with parents of autistic children, and interacting with autistic children of my own. And the feedback was a resounding, “Please try it.” And I think that … so, I’m going to answer your question two parts: I think that there’s an intuitive evidence and I think that there’s going to be actual evidence and the intuitive of evidence is kind of based on all of our collective experience.

Anne Zachry 3:59
Right, the anecdotal data. Yeah.

George Bailey 4:00
Yeah, yeah. There’s some heavy anecdotal evidence that’s seems to say, like, these children really value … they have the same needs as if … in that there’s, kind of, like, one type.

Anne Zachry 4:11
Right. There’s no monoliths, but, yeah, kids with similar needs. Yeah.

George Bailey 4:15
Yeah. These kids tend to love sleeping in the closet, under the bed, up against the wall, and … there’s something that’s like it. And there was enough there for us to see, so there was something there. But, all of the things that, kind of, come together out of this bed, it was not built for kid’s processing, initially. It was just, like, an enclosure with some LED lights and some fans and a mirror, and all of those elements, when combined together, seemed to form this really fantastic environment. And if you were to take any one of those things, separately … study this out and find some interesting things. Like for example, when you enclose somebody, then you give them darkness … well, darkness is heavily prescribed for good sleep hygiene.

Anne Zachry 5:06
Right.

George Bailey 5:06
… darker or something like that. It’s separate, but the enclosure itself provides almost like a sensory …

Anne Zachry 5:12
Right.

George Bailey 5:13
And, then, LED lights, you know, again, heavily used in the sensory, or special needs community …

Anne Zachry 5:22
Right.

George Bailey 5:22
Heavily used. And so all of these things … Now, where we’re at with clinical trials is that we’ve been in touch with the folks at the Thompson Center for Autism and Neurodevelopmental Disorders.

Anne Zachry 5:27
Um-hmm.

George Bailey 5:37
The lead clinician for this project is going to be Dr. Christina McCrae, who is published widely on autism and sleep, and that was a must. We needed somebody to do … to ask the right questions …

Anne Zachry 5:48
Right.

George Bailey 5:49
… not do what we say. I am trying my best to remove myself from the academic questions as much as possible to just, kind of, stand back and let them do their work.

Anne Zachry 6:01
Right.

George Bailey 6:01
Because, it needs an honest assessment. That was my stance from the beginning, is that, if were going to go into this, here’s how we’re going to look at it: We’re going to find out what’s true. And what’s true may not be as flattering as what we’d like, or maybe it’ll be moreso. Maybe it will be better than, you know … maybe we’re not being optimistic enough? I don’t know.

Anne Zachry 6:20
Right.

George Bailey 6:21
… but if we learned that “X” works … and we will continue to do facts …

Anne Zachry 6:25
Exactly!

George Bailey 6:26
… if we can say, if we learned that, “Y” doesn’t, then we will also chalk that up to success and say we’re going to stop doing “Y.” And if we learned that we should probably … there’s an implication here that we should be trying “Z,” then we’re going to start pursuing that. We’re not …

Anne Zachry 6:43
Right.

George Bailey 6:43
… because I think that it requires that kind of mentality to really test this out. So …

Anne Zachry 6:49
Well, yeah. I mean, any kind of solution requires that kind of mentality. That’s just common sense. Which, you know, we also call scientific method.

George Bailey 6:59
It’s hard to do this in our community. When you’re an entrepreneur, you’re hustling and you’re getting out there. You’re constantly … you just gotta, you know, sell, sell, sell, and you got to pitch your brand, bla bla bla. But you got to break out of that sometimes and just listen to what is being told to you.

Anne Zachry 7:19
Right.

George Bailey 7:19
And sometimes even … sometimes that’s hard, but you put your heart and your mind to it and your … and your money, as well. It’s very difficult, but at the same time, if you listen, then the rewards in terms of, kind of, like, personal satisfaction that you are doing right by the people that you’re trying to serve … Pretty tremendous!

Anne Zachry 7:40
Yeah, and I have to agree with that. Well, and what you’re making me think of is that the psychology of sales and marketing is the exact same science as the psychology of good instruction. It’s … it’s all the same thing.

George Bailey 7:52
Yes!

Anne Zachry 7:53
It’s all the same thing. And so, what you’re doing is … when you’re doing … there’s the, you know, the snake oil salesman, kind of, “I’m going to sell ice cubes to Eskimos and get people to part with their money for things they don’t need.” But then you also have consultative sales, which is responsible sales, where you’re actually … you’re not out there selling, you know, product features, you’re out there selling solutions to people’s problems. And you’re … you’re approaching it from the standpoint of, “What is your situation and do I have something that will help you?” And if you do, then what you’re really doing is you’re not selling the product, you’re selling the solution, and the product just happens to be the means to that end. And that’s a more authentic thing. And you build relationships with people. And it requires you to listen to what their needs actually are. And this is what they’ve been, you know, all these sales classes, they have people take, this as the message, and this is what you’re doing. But it’s also exactly the same thing as when you’re trying to identify an IEP solution for a kid. You’ve got to pay attention to what’s going on with the kid as a unique individual and match the solution to the actual need. And so there really is no difference between consultative selling and IEP development when you’re talking about matching solution to need. And …

George Bailey 9:11
I love that perspective. And, you know, it’s interesting, because I found myself in a few situations where I’ve actually explicitly told the parent, “I don’t think we’re a good fit for you.” And I feel like … it may feel like a, kind of, short-term security to be able to say, like, “Yay!” You know, “We sold another bed.”

Anne Zachry 9:30
Right.

George Bailey 9:31
But, it’s a long term hurt on the brand. If you really are trying to establish yourself, it’s like, we don’t make scientific claims. No matter what, here’s the crazy thing. It’s like no matter how many times I say that we are not making medical claims …

Anne Zachry 9:48
Right.

George Bailey 9:48
… there will be parents who read onto what we’re our saying medical claims …

George Bailey 9:53
Right.

George Bailey 9:53
… because hope springs eternal and they’re looking for a solution and this sleeplessness … sleeplessness of their child is causing them genuine distress.

Anne Zachry 10:05
Right.

George Bailey 10:06
When a child’s not sleeping with the entire family has suffered.

Anne Zachry 10:09
Exactly!

George Bailey 10:11
And so you have to be really careful to kind of repeat that again and again. But at the same time, there’s the kind of the other interest … is that you also want to make sure that you get it out there, because you rely on those early adopters who are like, really like, they’ll take a risk.

Anne Zachry 10:28
Right.

George Bailey 10:28
I love those people. I am not an early adopter, okay, I wasn’t on Facebook until 2011. I’m the last kid on the block buy the new thing. But the early adopters, one of the things whether they succeed or fail with your solution, they give you information, that it’s very valuable, you have to respect that …

Anne Zachry 10:52
Absolutely!

George Bailey 10:53
… going back to your sales mentality, I think you’re right, I don’t think that it’s always true. I’ve seen salespeople, huge tricks of the trade that I personally find to be manipulative …

Anne Zachry 11:07
Right.

George Bailey 11:07
… but I used to be a foreign language instructor …

Anne Zachry 11:12
Hmmm.

George Bailey 11:12
… for nine years. And it was really fun. I loved that time in my life, where I got to teach, and there was always, kind of, the part of explanation.

Anne Zachry 11:24
Yep.

George Bailey 11:25
You know, where you had to learn to, kind of … and a lot of the explanation that I did was kind of fun, it’s a little bit off topic, but you know, I taught Mandarin Chinese, first year. And that was very fun. And, the way that we would explain things … we were told by the teacher that we worked with, I was a teacher’s assistant that also taught courses, you’re not going to use English to teach Chinese, you’re going to use Chinese to teach Chinese.

Anne Zachry 11:49
Right.

George Bailey 11:50
So, there was a lot of need to be able to be empathetic with my audience. When I was looking at 20 of my students saying, “Wǒ” (我) which is the Chinese word for “I” or “me,” that I’d have to see, are they really getting it? And I think that with the art of sales, you have to really listen to people.

Anne Zachry 12:10
Yeah.

George Bailey 12:11
And the better you are at listening to people and their needs, I think the better you’re going to convey, like, that … that you really care and that you’re ready to solve a problem and not just, like, you know, get … sell snake oil.

Anne Zachry 12:24
Right. Well, again, I relate it back to … everything back to IEPs, because if you think about the IEP process, it’s the same thing. You can’t write an IEP, an individualized program of instruction for somebody, unless you listen to what their needs actually are. There’s not a one size fits all. That’s called Gen Ed.

George Bailey 12:45
Yes, yes.

Anne Zachry 12:46
You know, and, and so, you know, general education is the assembly line. And special ed is the custom shop.

George Bailey 12:55
You know, I really agree. We’ve worked with some IEP experts with my oldest son, Joseph. And I was always really touched. When I felt like they were taking the time to listen to me. And when they were really looking at my son and his specific needs, and so that’s, you know, it’s a labor of love. And it’s really critical to look at each child as an individual.

Anne Zachry 13:20
And, it’s required by law for that reason.

George Bailey 13:23
Yeah.

Anne Zachry 13:26
So yeah, so I mean, I realize there’s overlap, you know, all these processes and procedures that everybody’s using … it’s interesting that no matter what outcome you’re trying to achieve, very often there’s a similar formula to how you make it happen. And there’s always a needs assessment. And then there’s a matching of solutions and need.

George Bailey 13:44
A situational analysis.

Anne Zachry 13:45
Yeah. And so, I mean, it’s, again, you know, it’s common sense, otherwise known as scientific method. But, well, this is very interesting. So what, what kinds of … what kinds of responses have you gotten from the families who are using the ZPods?

George Bailey 14:02
So, we’ve got both the responses that have been highly favorable, and some that have been like, “Meh,” you know, but even with that, what we’ve never gotten .. what we’ve never heard from a single parent is, “My child does not like your bed.” We may have gotten responses like, “Your assembly instructions need some real clarity and they’re very inconvenient,” like, you know, we’ve gotten that …

Anne Zachry 14:25
Right. Technical stuff.

George Bailey 14:27
… from the parents, but the one universal is, “Our kids love, love your bed.” And then we’ve had another set of children where it’s like, minimalist a fact that they love it; they use it as a chill space. Right?

Anne Zachry 14:40
Right.

George Bailey 14:41
And then we’ve had a very large number of parents and again, I hesitate to get the numbers. I’ll give you what numbers I can, to be as, kind of, precise as possible. And we’ve worked between … with between 60 and 70 families, okay. And that number is always increasing and that there’s been a very high degree of customer satisfaction and a consistent feedback from families like, “Wow, my kid’s doing things that I’ve never seen the kid do before,” We’ve had, for example, one of my favorites was Dawson, a six-year-old boy, who, after a week of sleeping in our bed, the … first of all, the immediate result was that his sleep jumped from roughly two or three hours a night to about eight hours at the very least.

Anne Zachry 15:28
Praise God! That by itself is worth it.

George Bailey 15:30
Yes, that by itself is already worth it. But then, the, kind of, double validation came a week later, when the school teacher for Dawson pinned down the mother and said, “What are you guys doing different?” Because that was unsolicited.

Anne Zachry 15:49
Right.

George Bailey 15:50
One of the things we have to be really careful about as we study this is that parents who take the time and the trouble to purchase one of our beds have a bias towards believing that they made a good decision.

Anne Zachry 16:03
Right.

George Bailey 16:05
And, I don’t want to manipulate that. We want them to be happy, naturally. We want them to feel like they made a good decision. But I also acknowledge that bias that they have. So, when it comes to the third parties that come in and say, “Wow, I’ve seen some really, really great improvement,” … but we’ve seen that a fairly large number of cases where we’ll have like an OT say to parents, “This bed has been a game-changer,” things like that.

Anne Zachry 16:32
Right.

George Bailey 16:33
And, in Dawson’s case for the teacher to come up without knowing that there was a change in his sleep, but just saying, “This kid is more alert, more focused.” And, incidentally, in his particular case, there was talked amongst the parents about the possibility of institutionalizing him.

Anne Zachry 16:50
Right.

George Bailey 16:50
Because it was that bad.

Anne Zachry 16:52
Yeah.

George Bailey 16:53
And, Dawson’s not a bad kid. We know that. But, anybody who is under-slept so severely is going to have severe behavioral problems.

Anne Zachry 17:05
Right.

George Bailey 17:06
Sleep has incredible value for for the brain, for the body, you know, for cognition. it’s just …

Anne Zachry 17:14
… it’s neurologically necessary.

George Bailey 17:17
Yeah.

Anne Zachry 17:17
And it’s a … it’s part of human survival. You have to go through that or you will … it will make you literally ill. And …

George Bailey 17:25
And it sounds kind of funny, like trying to sell sleep. We’re not selling sleep, per se; it’s that we’re selling something that we hope will cause more sleep. But it’s almost a little bit kind of funny to hear myself, like, “Aww, now I’ve become one of those sleep preachers!” I keep reading these books about sleep, and I’m, like, these guys are all … dealing with sleep and saying the same thing. It’s almost like talking about water.

Anne Zachry 17:48
Right.

George Bailey 17:49
“Did you ever see the rejuvenative powers of water? It’s incredible!”

Anne Zachry 17:56
I know you … you really have hit on a very fundamental, visceral, survival-level kind of need that sadly enough in our society is neglected. And, you know, and you’re … you’re looking at, “Okay, how do we address this fundamental survival need, and these individuals who are struggling with this who … and are compromised?” And so I think that … I mean, I’m always excited to see new stuff. And anecdotal evidence is always a sign that, okay, we need to look into this a little bit more deeply to see, you know, what makes us you know, for real, so I’m always happy to hear that, you know, with stuff like this, the early adopters are like, “Oh, no, this seems to be doing a thing.” And all of it makes sense. I mean, logically, and intuitively, you’re right, it all logically makes sense. But it’s still going to be interesting to see what kind of research data comes from it and you know, … maybe some grad school student will latch on to it and want to write a paper or something. You just never know, and so …

George Bailey 18:54
And, that’s what we’re encouraging constantly. It’s that we want it to be subjected to scrutiny, empirical data, empirical study and and we also want to urge all companies out there that are trying to provide a solution for the autism community to find ways to get at third parties that are impartial to come in, because you only stand to gain …

Anne Zachry 19:19
Right.

George Bailey 19:20
… you may not hear what you think you hear; you may not hear what you want to hear, but you are going to hear what is going to be beneficial.

Anne Zachry 19:28
Right. Once you know what you’re working with, you can say, “Okay, well this is what I know I can do and I’m gonna stay in my lane and do only that,” you know? “I’m not gonna try and be everything to everybody,” and there’s … there’s a lot of value in that …

George Bailey 19:49
And, we don’t want that, either. You know, there’s this temptation to kind of overplay it, like, “Hey, you know this is going to do “X” and “Y” for the kid’s autism,” but you don’t know, it’s gonna be different for every kid, and it’s going to … whatever your child needs is going to be a very large combination of things. We are one part of a very, very complex puzzle of sleep …

Anne Zachry 20:03
Right.

George Bailey 20:04
There are physiological components to it, you know, some people can’t sleep because like internal parts of how they function.

Anne Zachry 20:13
Right.

George Bailey 20:13
Others that they’re … it’s just a matter of really good sleep hygiene. Some have a more selective sleep hygiene, which is kind of where we play …

Anne Zachry 20:20
Um-hmm.

George Bailey 20:22
… where they really need the aspect of enclosure, I don’t need to be enclosed in something to feel safe.

Anne Zachry 20:30
Right.

George Bailey 20:31
You know? Then again, I like being enclosed in my home, in my bedroom. You know? And then in my wife’s there. Those are some of the things that add to my own personal satisfaction …

Anne Zachry 20:42
Right.

George Bailey 20:43
… where I can calm down and initiate sleep. But some kids, they just thrive on …

George Bailey 20:50
And, you’re making me … the word “proximity” pops into my head, where … proximity to the wall, you know? How close are the walls to me? As … you know, if you’re … if you feel safe within your house, you’re still within a structure. But if that feels too spacious, and you need to have the walls closer to your physical presence to really feel that … that enclosed feeling, then I … then, yeah, that would, to me, say that some individuals need the walls in closer proximity to their physical beings than others. And, it again goes to everybody falls on a spectrum of some kind in every aspect of development one way or another. And that’s … this is just the one that you happen to be dealing with. And …

George Bailey 21:37
Yeah, some kids, actually … so our bed, it fits a twin size mattress; it’s about three feet tall on the inside. It’s pretty big I can I can sit up, I can kneel down and I’m barely touching my head.

Anne Zachry 21:51
Right.

George Bailey 21:52
So some kids feel comfortable in that, and they feel it. And I’m wondering, this is now I’m, kind of, theorizing that I wonder if this would fall under the proprioceptive sense. You know, where you can kind of sense that closeness to something without it being a touch sensation.

Anne Zachry 22:10
Yeah, because proprioception is like your the sensation of your body moving through space. And, yeah, and pressure and those kinds of things. Well, and I’m wondering if you’re enclosed inside of the pod, how much of it is air pressure? And if there’s an inner ear vestibular piece to it as well?

George Bailey 22:29
Yes, yes.

Anne Zachry 22:30
That’s curious.

George Bailey 22:31
… really comfortable, that other people feel like all they need around them are the warehouse walls of a Costco.

Anne Zachry 22:37
Right.

George Bailey 22:38
You know, something very large, they’re fine with that, you know? So …

Anne Zachry 22:43
Well, and it makes you think of our kids on the spectrum that struggle with personal space, and getting all up in people’s faces, and they don’t understand that other people have a personal bubble, and you need to step back a few.

George Bailey 22:54
Oh, that’s a great comparison!

Anne Zachry 22:55
And I’m wondering how much of that is inter played with what you’re dealing with? That’d be an interesting line of inquiry to explore.

George Bailey 23:01
Yeah.

Anne Zachry 23:03
Yeah. Well, you know what I’m thinking of to is here in California, which I know is unique, because not most states don’t have anything if any other states do. I’ve not heard of any other states that have it. But here in California, the Department of Education operates what they call Diagnostic Centers. And there’s three of them. There’s one up in Northern California in Fremont. There’s one in the central part of the state in Fresno. And then there’s another one down in LA for … that covers Southern California. And what they do is they’re … they’re funded out of the State’s federal special ed dollars and state special ed dollars, skimmed off the top, and then all the rest goes to the public schools. And so what Diagnostic Center does is they conduct evaluations of students who their local education agencies are having a heck of a time, even going through all the normal assessment procedures, trying to figure out what to do for these kids. And what they do, it’s an on-site thing where they … the family will go and the State will put them up in a hotel and give them coupons to, like, Soup Plantation, you’ll never want to eat there again by the time you’re done … and, and you stay there for like three or four days while your child is being evaluated by all of these “ologists” in this facility, while you as a parent are sitting on the other side of the one way glass watching the whole thing. And you’re getting interviewed and they’re just like turning, you know, your whole world inside out to get a handle on what’s going on with this kid. And I’m wondering if Diagnostic Centers wouldn’t benefit from having something like this to test with those kids who have those kinds of issues.

George Bailey 24:34
That is such a great question. Well, first of all, let me say that California has a fond place in my heart. I was born and raised in Hayward …

Anne Zachry 24:42
Oh, right on.

George Bailey 24:51
… so not too far from your Fremont Diagnostic Center. And, you know, In-and-Out Burger, I don’t know if you’ve ever been there …

Anne Zachry 24:51
Oh yeah.

George Bailey 24:52
Best hamburgers in the West. Great place. But to your point, that’s actually … I don’t know if we’ve toyed with that specific idea. I love that a lot. One of the things we have toyed with that we’re working on right now, it’s hard to get started to get … we’re very … we were three years old as a company,

Anne Zachry 25:11
Oh, you’re babies. Yeah.

George Bailey 25:12
Yeah, we’re babies. We’re two years old working within the autism community.

Anne Zachry 25:16
Got it.

George Bailey 25:18
But one of the things we’d love to see happen is we would like to get more Airbnbs to use these …

Anne Zachry 25:25
Ohhh!

George Bailey 25:25
… just depending on what kind of family it is. Well, then the point is that it’s kind of like if you go to the mattress store, and the guy says, “Well, try the mattress out, see how you like it.” Well, you’re gonna sit on the end, and kind of push it down with your hands. You don’t know what you’re doing. It’s kind of like, “How do I know if this is good?” And then he’ll tell you, “You gotta lie down.”

Anne Zachry 25:46
Yeah.

George Bailey 25:47
So we’re trying to take it to the next level with our idea of putting these in Airbnbs because then it’s like getting inside the bed. We’re pretty good at assessing, we’ve had a number of kids come by St. Louis, just to try it out, get inside, and they love it. It’s pretty automatic. And they’ll close themselves in without being asked to do so. It was actually my son, when he did that. And then lie down. And I didn’t know what he was doing in there. I gave him five minutes alone, just kind of waiting. And then I was just like losing my patience. And I opened the door. And there he is on his back with his hands behind his head. Very chill, very relaxed. And that led me to like, “Okay.” That was one of my earlier signals were onto something. The point is that I could observe that for five or 10 minutes. Or I could do it overnight…

Anne Zachry 26:36
Right.

George Bailey 26:37
… with a lot more confidence.

Anne Zachry 26:40
It’s like an opportunity to try it out. You know, that’s interesting that you would say that, because separate from what we do in special education, I have a whole other program that we run that’s devoted to sustainable living and food security.

George Bailey 26:53
Yeah? Oh, that’s great!

Anne Zachry 26:53
And yeah, and so it’s all evidence based instruction. It’s the Learn & Grow Educational Series. But what we’re looking to do is build these Learning Centers where people can come and stay in a sustainably built structure, with grey-water recapturing and composting toilets, and all these things that sounds scary, but really aren’t and try it out for a few days …

George Bailey 27:00
… would love this, what you’re doing by the way!

Anne Zachry 27:15
Yeah, and …

George Bailey 27:15
… very much into this!

Anne Zachry 27:17
… our ultimate goal is to at some point in time … what’s the point of convincing people to live this way, if there’s no place where they can go live this way?

George Bailey 27:25
Yes!

Anne Zachry 27:25
… is we also want to be able to do affordable housing that’s sustainably built with all of these same technologies. And so that if they go and they … they do a trial through Airbnb, at one of our Learning Centers that we are looking to build in the future, that they go, “Oh, I can deal with this. This isn’t gross. This is still really bougie. I can handle this,” you know, then they … they can … there’s a place for them to go buy into a home that has all of those things. Because right now, it’s all the DIYers who are doing that, and not everybody wants to build their own sustainable house. Lots of people just want to go buy a house and move in and be done with it. And but there’s no sustainably built homes in neighborhoods like that. And so it’s the same concept of, if you go and try it out first, and then realize, “Hey, this is cool,” and you see benefits from it, then you’re, like, ready to approach it for real and incorporate it into your actual lifestyle. And so I think that that’s something you are doing that’s in common with what I’m doing in this other program I have. And that there, there’s a lot of value of having that Airbnb Experience out there for people to try things that are new. It’s something that I don’t think Airbnb realized when they first started that they were going to create.

George Bailey 28:34
Yes.

Anne Zachry 28:35
But it’s you know, there’s now all of these places, and now they have Experiences. In fact, our Learn & Grow Educational Series, we actually do classes (and tours) through Airbnb Experiences. For one thing, it’s a lot more affordable to do it that way for us because Airbnb will insure all of the events that we conduct for up to a million dollars per event.

George Bailey 28:55
Oh wow, yeah!

Anne Zachry 28:56
And so that means I’m not having to go down and get a certificate of insurance every time I’m conducting a class. And the owner of the property where I’m doing my classes is like, “Oh, thank God, I’m not going to have to file a homeowner’s claim if somebody trips and,” you know, “sprains an ankle while they’re walking through the driveway or something.” There’s all of these advantages to using Airbnb to create these novel experiences that people can test out for just a few days without having to change their whole living experience. And then if they decide, “Oh, this was worth it,” okay. It is like a living test. And I think that’s … that’s huge. I think there’s a lot of value in that. So that’s exciting. I think that that’s a smart way to go.

George Bailey 29:36
And it’s something … it’s something that we hope to get started as soon as possible. I know that maybe some of your listeners are thinking, “Oh, where can I do this?” It’s still in process. I mean, we’re still looking for people to kind of try it out. We may have something in Indiana, but not … certainly not in California right now. But what’s interesting to me about it is that on a broader topical discussion rather than just autism, it goes to show that we have shifted our purchasing behavior dramatically since the advent of the Internet, and Amazon has really changed.

Anne Zachry 30:07
Huge. Yeah.

George Bailey 30:08
It’s big because, like, we think, for example … we used to think, “Well, what would the brick and mortar store look like for our operation?” And pretty soon after that, we concluded that there is no brick and mortar store for us.

Anne Zachry 30:22
Right.

George Bailey 30:22
That’s not to say that brick and mortar is dead. I’m actually a big fan of brick and mortar. I love getting out there. I love being around people. I love walking around. I don’t want to buy everything I have on online and then cloister myself.

Anne Zachry 30:35
Right.

George Bailey 30:37
But, that being said, this specifically, it’s just, it’s a big product. And it has … you’re going to consider it more like a buy like a car…

Anne Zachry 30:48
Right.

George Bailey 30:48
… which can be which can’t be bought at the store.

Anne Zachry 30:51
Right. Yeah, it’s not an impulse buy. Yeah.

George Bailey 30:54
Yeah, it’s not an impulse … Thank you. That’s basically it. Nice, Anne. Yes!

Anne Zachry 30:59
… that, and, yeah. So, because it takes that consultation planning and forethought and thinking, yeah, it’s not really a retail-oriented kind of thing where you would just have like, the ZPod Store. I can see like, if you had a ZPod section of a mattress store or something. But I can also see, you know, literature in developmental centers and regional center offices, you know, and things like that, where it would be something that, like you said, you’re not doing a medical model. So it’s not necessarily something that would be prescribed. But, you know, like an assistive technology evaluation, when you have kids who are in a special ed, who you’re trying to find out what technologies will give them access to education. Well, what if the issue is sleep? Could that be part of an assistive technology evaluation? And if that’s the case …

George Bailey 31:51
Now that being said, I’m really excited you brought that one up because I was I was just about to bring it up. Assistive technology programs … if you have an assistive technology program nearby, like, ask them about us. And the reason why is because we’re actually currently I mean, literally currently reaching out to all of them. Because we didn’t really even know they existed. I was not sophisticated enough with special needs community that really understand what these things were …

Anne Zachry 32:20
Right.

George Bailey 32:20
… but it’s a program that’s been around since the 80s …

Anne Zachry 32:24
Um-hmmm.

George Bailey 32:24
… and every state has one. And all of a sudden, out of nowhere, last year, the director for the Assistive Technology program for the Commonwealth of Massachusetts, reached out to us. And these guys, they set the standard.

Anne Zachry 32:40
Yeah.

George Bailey 32:41
They’re actually the best in the United States. And this guy, the director, really wonderful gentleman, Tom Mercier reached out to me, I think he’s retired now, but Tom said, it’s, like, you know, “Some parents are really trying to get me to look at this, and I just want to take a look.” And we were like, “Sure!” you know. We set them up with one of our beds, they tried it out with the family. It was really amazing success for this family, to the point where Tom and his team approved for their field operators to be able to recommend the bed.

Anne Zachry 33:13
See in this … yeah?

George Bailey 33:14
I’ll end with saying, now we’re reaching out to every single one of them, just to educate them. And they are a great place where, if they do keep these products in stock, and then allow people to try them out to find if it’s suitable.

Anne Zachry 33:31
Right. Well, and you’re making me think of so many things. So, when you’re talking about an assistive technology evaluation, trial and error is the only way to know if the tech is going to meet the individual’s needs. So it doesn’t matter how much peer reviewed research you have about, you know, this group of subjects in a study. How does that relate to Bob over here who needs this particular problem solved? Is it going to work for Bob, you know? And so … so you have, you know, you … you end up with a study where, you know, N=1, you’ve only got one subject, and … when you’re doing an evaluation … And you’re doing individualized planning, and whether you’re talking about special education, or developmental services, whether it’s through a state DDS or they outsource it to regional centers, it varies from state to state, or you’re talking about the Department of Rehabilitation, which is to employment what special ed is to education. And you’re talking about 18 and older now and adults with disabilities and if sleep deprivation is an issue that prevents them from holding down a job, is this an accommodation that department of rehab might have to buy somebody to keep them employable? And so there’s all and it’s, it’s all individualized planning, everybody gets an individualized plan of something, some kind. So if it’s Regional Center, it’s an individualized program plan – an IPP. If it’s special ed, it’s an Individualized Educational Program – IEP. If it’s Department of Rehab, it has an Individualized Plan for Employment – IPE. But they all start with that “I.” And it’s always coming down to the assessment of that individual person of, “What are your unique needs, and how can we meet them?” And when you’re doing AT evaluations, again, it’s trial and error of, “Let’s try this tech with you and see if you benefit from it.” Then, really the bottom line, that’s the only thing that works in an AT eval. And that’s just as scientifically valid as a-million-and-one research studies about a bunch of random people that doesn’t have anything to do with the one person you’re trying to serve. So I think that if you connect with all of these publicly funded agencies and have to do individualized programming, then your support data is going to come from the instance-by-instance individual assessments of, you know, how many of these individuals benefited from this tech? And what was it about them that made it useful for them? What do they share in common in terms of needs? And what do they share in common in terms of effects? And, then you get your aggregate data from that, but you got to have enough individuals served that way. But I think that might be an interesting way to go. Because you don’t already have to have the published research to necessarily back you up. If you’ve got, I mean, where you’re at right now is sufficient, and the fact that you’ve already got a regional center here in California funding this for someone, and you’ve got these AT assessors from … from, you know, around the country, taking a serious hard look at this from a developmental standpoint. I think that’s huge. And that’s very compelling.

George Bailey 36:35
Oh, I feel very, very fortunate. And the thing, I know, a couple of points to hit number one, our parents are the secret sauce.

Anne Zachry 36:43
Yep.

George Bailey 36:43
They work so hard.

Anne Zachry 36:45
Yep.

George Bailey 36:45
And they make it happen. Like, we’re where we’ve had successes, really, primarily, because the parents pushed for this, they see what we’re doing, they see the value, they have to do the sales, you know, to these institutions.

Anne Zachry 36:58
And they have to enforce the laws with these institutions. I mean, all of these …

George Bailey 37:03
Yes, enforce the law. I love that.

Anne Zachry 37:04
… all of these … the parents are the enforcement arm of all of these civil rights laws that protect individuals with disabilities. It’s usually the family that has to go to bat for an individual who can’t go to bat for themselves. And, and so you, you’ve got the way the laws are written, is that, you know, and this is democracy: Of the people, for the people, by the people. So the way the laws are written is the people are supposed to be able to … you know, advocate for themselves using these systems. Now, how effective that is, is a whole nother conversation. But the way the system is created, it’s … it’s on … the burden is on the family …

George Bailey 37:39
Yes, absolutely.

Anne Zachry 37:41
… to drive the process. And these, these programs exist for their benefit, but they’re supposed to go seek them out and avail themselves of these programs and say here are their needs that need to be met, what do you got, and then when they come to … come with a unique issue that the system doesn’t already have a, you know, a canned solution for, and they’re required to innovate, these institutions are not built for innovation. They’re built for bureaucracy. And so if the burden then falls on the parents shoulders, they go, “Well, wait a minute,” you know? “You’re here to serve us,” you know? “That’s we pay taxes, and we’ve already paid for this stuff. So what are you gonna do with the money you’ve already been given?” And so, you know, it really is … it does fall on the shoulders of the parents, and not just because they’re the secret sauce. It’s because they have to be. You know, it’s how the system is set up.

George Bailey 38:31
As much as I know that there are people out there … my son’s, you know … people who teach him and mentor him and stuff like that. Love him. Take care of him.

Anne Zachry 38:43
Right.

George Bailey 38:43
But none of them … none of them love him like I love him.

Anne Zachry 38:46
Right.

George Bailey 38:48
So you have to fight to be that advocate, but you bring up another interesting point earlier, that just really jumped out to me that is that, on the one hand, you’re totally right, that, you know, what is right for one individual may not be another and yet, we still have a big need for clinical trials …

Anne Zachry 39:06
Yep.

George Bailey 39:06
… for these broader statements. So that we can at least know what could be predicted to work. In other words, those individual assessments if you have to start from scratch every single time, because you don’t have any big picture data …

Anne Zachry 39:19
Right.

George Bailey 39:20
… and it’s very hard for you to be able to say, “Okay, this is what’s gonna work,” or, “We should even try this.” Because every single time that you revisit … you visit an individual, you have to start from scratch …

Anne Zachry 39:32
Right.

George Bailey 39:32
So, big picture, you know, clinical Data, allows us to be able to predict.

Anne Zachry 39:37
Right.

George Bailey 39:38
This study says that 80%, 70%, 90% of people with this condition are going to respond positively to this.

Anne Zachry 39:47
Exactly, it helps you narrow down the field of what to try. Yeah.

George Bailey 39:51
Yeah. At the same time, on the individual level, if your child … turns out that your child gets a full 10 hours of sleep, which is probably what they should be getting at the age of five to 18, or whatever the number is, right?

Anne Zachry 40:08
Um-hmmm.

George Bailey 40:08
Ten hours of sleep, they get that because they bounce the ball 10 times before they go to bed. They’re good. Guess what? if that works for your kid, rock on.

Anne Zachry 40:16
Right.

George Bailey 40:17
I love that. And I love the individualized approach. So there really is value in both sides of that.

Anne Zachry 40:23
Absolutely.

George Bailey 40:25
And then on the other side, one thing that I wanted to add is that, you know, we have these individual customers. Our goal right now as a startup is, how do we early on establish a pattern of gathering data that can tell us more about each of these individuals, and then the aggregate, so that we know with greater certainty, what is still … what is going on what is helping, what is not helping? And I think that it’s very important, you know, I would really urge all startups, anybody in this space, do clinical trials.

Anne Zachry 41:00
Yeah.

George Bailey 41:01
Expose yourself to that. And also do everything you can to get constant customer feedback, because they’re always going to tell you ways that you can improve …

Anne Zachry 41:11
Right.

George Bailey 41:12
… and some can be more shy about it than others but you’ve got plenty who are just, like, “I’m going to tell you my mind. I don’t like this part of your product, but I do like this,” and you will improve.

Anne Zachry 41:21
Right.

George Bailey 41:21
Some of our best improvements came because, you know, I got told by a very frank parent, “I don’t like this.”

Anne Zachry 41:28
Right.

George Bailey 41:29
And, I was really grateful, because then we took those things and immediately said, “We have some changes to make.”

Anne Zachry 41:34
Well, in your … I was gonna say you’re making me think of how it could be done, because how you could get that data, because if you do the individual assessments where you’re matching product to unique individual need, and now you’ve got 50 individuals who have this in their IEP, or their IPP, or their IPE, whatever. All of those documents are goal-driven. So, whenever you do any kind of individualized planning, first, you have to figure out what it is you’re trying to make happen. And then you write a measurable annual goal to that need. So if the goal is is we want Bobby to sleep at least eight hours a night for a full month straight, then that’s your annual goal, that by the end of this year, Bobby is going to be able to sleep the, you know, at least eight hours a night for a month straight. And the progress … being made towards that goal is going to automatically generate data if the goal has been legitimately written … if it really has been written in a measurable manner. And so you’ve got all of these individuals with all of these goals that speak to sleep, and this is the solution that they’re attempting to meet that goal, the data collection is naturally going to speak to the degree to which the device is helping or not. And then when you get enough people who have these devices as part of their individualized plans, and you’ve got this progress towards goal data being collected in terms of how efficacious it is, then you can take all of these multiple individualized reports, and then turn it into a report of aggregate data where you say, “Okay, well, out of the 50 people where we had on these individualized plans, 25% of them have this issue and responded this way versus this or …” you know what I’m saying? So you’re taking the individualized data, and piling it all together to create a body of aggregate data that can then be analyzed. And so you’re taking advantage of both sides of that coin to get valid data. And … and it’s performance based. It’s not hypothetical. So that’s what I was thinking …

George Bailey 43:37
That’s one thing that really, I love. And that is, I want to emphasize to you on the terms that what, folks in the IEP, what I would love is that, I’m going to speak a little bit, because I’m not the IEP expert, okay?

Anne Zachry 43:56
Right.

George Bailey 43:57
But, the thing that I hope that a lot of IEPs take away from this is that, of all of the aspects of a child’s life we’re talking about, this is a pretty critical one.

Anne Zachry 44:08
Yep.

George Bailey 44:08
I’m not saying it’s the most important because I think that each of us in our specialties, we’re all vying for attention, we’re all trying to, “Well, we’re the most important because we’re sleep and that’s 1/3 of your life,” and “We’re the most important because we’re broccoli, and if you don’t eat broccoli, you’ll get cancer!” All of us are competing, but I am here to say that sleep is a critical component of your IEP.

Anne Zachry 44:33
Yeah.

George Bailey 44:33
And, if it’s going great, that’s wonderful, but it should be visited. And that … that’s a hard to find in a professional, in the sense that they at least have to have some fundamental understanding both of its benefits, and maybe some kind of surface recommendations that they can make, at least getting out the gate to, kind of, let’s … let’s take care of some of the things that could be the problem. Let’s find out, for example, your child … Is it dark enough when they’re sleeping? Is it too noisy? Are you watching television until 11 o’clock at night with your child exposed to screens? These types of questions help us to eliminate as factors, possible causes …

Anne Zachry 45:17
Right.

George Bailey 45:18
… what is driving the loss of sleep, and you need to have at least a fundamental, basic understanding of what could be getting in the way of sleep. Now, of course, at that point, you always want to have a good “sleep go-to”; somebody that you go to, “Okay, you know, I’m out of it, I’m out of my depth, I recommend targeting this institution with sleep centers,” …

Anne Zachry 45:40
Right.

George Bailey 45:39
… or something like that. And even then, though, I’ll tell you that I get a lot, a lot of phone calls from parents who said, the sleep center’s, like, given up.

Anne Zachry 45:48
Yeah.

George Bailey 45:49
They just don’t know what to do with this kid. Because this kid defies their kind of expectations for what should be helping the child to get better sleep.

Anne Zachry 45:59
Well, and I would think the sleep centers would want to test your product as well to see if … especially when they’re running into a situation like that. That that should be part of the testing milleu.

George Bailey 46:07
Yeah. Well, this is all the more reason for in-depth clinical trials, to be able to put in front of them, because they will correctly come to us and say, “We expect you to have data.”

Anne Zachry 46:19
Right.

George Bailey 46:20
And I expect that from them. I think that that is good. Now, if they’re so inflexible as to not be helping at all, especially when we already have the pretty heavy anecdotal evidence …

Anne Zachry 46:32
Right.

George Bailey 46:33
… that this is something that should be taken seriously, the aspect of that concept of enclosure, that I think would be kind of negative. But I do expect them to have an academic interest in what it is we’re doing.

Anne Zachry 46:47
I would think they’d be wanting to … helping you do the studies. That they would want to get in on and get published. I mean …

George Bailey 46:52
Oh, yeah. The reality, though, behind studies that we should all here bear in mind is that no matter what you do, you’re going to be spending money.

Anne Zachry 46:54
Right.

George Bailey 47:02
And so, for example, investors and startups, they don’t actually like to spend money on stuff. If you go to investors and say, “I want to raise capital, this amount of capital, $200,000, or whatever it is, is going to go towards a clinical trial.”

Anne Zachry 47:18
Right.

George Bailey 47:18
They’ll say, “Come back to us, once you’ve done the clinical trial.”

Anne Zachry 47:21
Yeah, it’s the same way with nonprofits. It’s like, “We’ll give you a grant, if you can show what you’ve done with the grants you’ve gotten in the past.” I’m like, “Well, now, somebody’s got to be the first one, here.”

George Bailey 47:33
Yeah, so you have to look for people who are very invested, not just financial returns, that you may be able to provide, but the outcome that they actually love the story that you have …

Anne Zachry 47:47
Right.

George Bailey 47:48
… what you’re trying to create. And so that’s where, you know, I agree with you that I would love to have more sleep centers, try our beds to figure out how effective they are. And not just that the tried numerous aspects. It’s not like, the bed’s are effective or ineffective. That’s not really …

Anne Zachry 48:05
Right. It’s like, how are they effective? And what areas? Yeah.

George Bailey 48:09
Yeah, yeah. Or, what about the scent? Is the smell of the space affecting anything? What about the temperature? And so there’s so many variables. We do have the, kind of, virtue of being able to isolate those variables and create some constants that are not really, as easily achieved in normal experimentation. I actually had a really good conversation with Temple Grandin about this, an the thing that she said, that just blew my mind, I would not have been the one to think of this, she’s very …

Anne Zachry 48:43
Oh, her brain is just something else. Yeah.

George Bailey 48:45
It’s really amazing. The thing that she told me … she says, “Every kid who sleeps in your bed, the same sheets, the same mattress …” and then she laid it out, like, “This is what it’s gonna look like,” It’s just like, “Oh, my gosh!” I immediately ran to my pencil and I’m just writing stuff down, going “Thank you! Thank you!” She’s so …

Anne Zachry 49:12
Yeah, the trial is … it’s not comparable if everybody’s not experiencing it under the exact same conditions. You can’t compare one person’s experience to another unless it’s all identical. Yeah, that’s the thing about clinical trials.

George Bailey 49:24
And it was really refreshing to get her perspective on that. I feel she’s very generous with her time.

Anne Zachry 49:31
She is.

George Bailey 49:33
And so that’s one of the things that I like about events is that we can isolate a lot of factors like, look at, okay, so this is one of the things we’re trying to get people to think about as we look at this as a solution is that, imagine every autistic child in the United States and adult. Now, imagine all of their different living situations. Some of them have big rooms, small rooms, most of them probably small rooms, you know, because we’re not all wealthy…

Anne Zachry 50:03
Right.

George Bailey 50:05
… you know? Even the room, the shape of the room, the lighting in the room, the proximity to the city, some sleep right next to the train tracks …

Anne Zachry 50:12
Right.

George Bailey 50:12
… and so to be able to isolate, their kind of like, the … the ideal is really hard to do. And I like the idea that we’re working towards that. And that we … were kind of, let’s give a consistent and predictable environment in which to control for other variables. And then we can start really isolating different variables in a quantifiable way that may be causing some of the more serious issues that we’re seeing.

Anne Zachry 50:44
Totally makes sense. Well, so we’re coming up now on … it looks like almost 50 minutes

George Bailey 50:51
It’s been … every bit, it’s been fun.

Anne Zachry 50:57
I know, this has all been, like, enthralling. So um, but I know that not everybody’s gonna want to listen for like, hours and hours. So I think the big question that people are gonna have after listening to all of this and going, “Well, that sounds really cool. How much does it cost?” So what is the price point that … that parents if they’re interested in looking into this, what are they looking at, you know, in terms of cost? I mean, even if a parent were to lay out money for this, there’s a possibility it could be reimbursed by any of these agencies that have an obligation to their kids. So … but it’s going to require, you know, proof of purchase and all that kind of stuff. I mean, what kind of price tag?

George Bailey 51:33
So we’ve got the bed, as I’ve said, covered in states like Massachusetts, Missouri, Minnesota, Ohio, California, and Kansas, and we’re gonna keep on working on that.

Anne Zachry 51:42
Good.

George Bailey 51:43
We’re happy to kind of advise parents on how we think that can be best accomplished. They come out in June, the new version, because we sold out all of … all of our China inventory.

Anne Zachry 51:55
Wow.

George Bailey 51:55
We have a new Made-in-the-USA version that has upgrades all based on what we heard from parents.

Anne Zachry 52:01
That’s so cool.

George Bailey 52:02
So the new one will cost $5,000, retail. That being said, the first 288, that we’re going to be selling are going to be $2,800 each, and that shipping included on those 288.

Anne Zachry 52:14
Okay.

George Bailey 52:16
So we’re going to cover the shipping on that. The reason why we want to get these out and want to get people experienced … I was gonna say that, we do have financing and such, but the fact of the matter is that if you are invested in trying this for your child, we are invested in finding a solution. We have been very fortunate to get some really great guidance on how to get these things funded, we really want to share that with people. Our website is zpodsforsleep.com.

Anne Zachry 52:48
Right on.

George Bailey 52:50
Feel free to reach out to us because we are so invested in these kids, and we just want to help in any way that we can.

Anne Zachry 52:58
Well, that’s really exciting. And all that being said, I mean, for me as a … as an advocate, someone who goes in and helps families advocate for these kinds of solutions for their children, you know, this is something that we regularly do. It’s like, “This is cost-prohibitive for this family. It’s not like we’re asking for a $2.99 app, you know. This is this is an outlay of cash that is a necessary accommodation for this particular individual.” Then, you know, I know that I can go … these are the kinds of things that I go to agencies for and say, “Look, you know, if it was something easy and out of pocket that this family could do, but this is this is an expenditure. And this is what these public resources are for.” I’m really excited. I’m going to be looking on your website to see what you’ve already got up there in that regard … of how parents can go advocate for themselves to get these things. But I would also want our listeners to know that if you already have an advocate or an attorney that you’re working with, and this is something you think might be appropriate, you would want to involve that person in the conversation as well. Because, they may know, you know, how the system works a little bit better in terms of rules and regulations to help you navigate those sharky waters and overcome whatever objections people might have. Because the agencies don’t want to spend that kind of money either. And they’re going to come back and say, “Oh,” you know, “… you just want us to fly your kid to Hawaii and swim with the dolphins.” And you know, it’s like, “Look, dolphin therapy might be effective, but does it … does my kid needed to learn how to read? No.” And so, you know, there’s, you know, … I’m not, you know, I’m not the person who’s going to go there and try and pitch some, you know, crazy, ridiculously expensive solution just because, you know. We’re not trying to help people milk the system for things that are not what the system was designed for. But in an instance like this where, like you were talking about the one child who was on the verge of institutionalization, well, now you’re talking about least …

George Bailey 54:48
Yeah.

Anne Zachry 54:48
… least restrictive environment, that in all of these programs, the … the commitment is to try and keep people in as non-segregated of a setting as possible, and to keep them as integrated with the rest of society as much as you can. And, you know … and also, when you’re looking at it from a budgetary standpoint, which costs less? A one-time expenditure of five grand, or $8500 a month for a residential treatment facility, and to accomplish the same outcome? And so for those kids who are in that unique boat, I think that this is a serious conversation to be had. Because how many residential placements could be prevented by making the home environment more suitable? When you’re talking about … it’s really about ecological control. And all if for the … in the absence of ecological control, you’re going to pack this kid off someplace and separate them from their support system and their family. You know that … that’s never the best idea. And that’s always the last resort. So if there’s another layer of intervention that can come before that, that can prevent it, that’s always important for everybody in the … in these lines of work to understand and know about … that this could be something that the agencies understand this is far less expensive than what the alternative is for some of these individuals. And it certainly is far more compliant and less segregationist. And so for everybody involved it’s a better solution, if that’s the case. And so I think that this is something that other advocates and attorneys need to be paying attention to as well, that this is something they could potentially be asking for if it suits the need. And if so, only an individualized assessments going to answer that question. And …

George Bailey 55:03
And I would be happy to talk with any of those attorneys formulating strategy sessions. It’s kind of our joy, to be able to help. It is funny, but I’ll leave you with one last story. I know that we’ve talked a long time … about two months ago, I was helping a mother and I was in a hearing. I was not allowed to speak. They were asking about, kind of, like … they’re looking for any sort of other low-cost, you know, a solution and this mom had tried everything.

Anne Zachry 56:52
Right.

George Bailey 56:54
Finally, the, kind of, opposing counsel, or whatever you want to call him there, was saying, “Well, this is … it’s just changing their environment. That’s all that they’re doing. Why not change the room?” Like, “You can get … the room doesn’t need to be that …” Something like that. I was just thunderstruck …

Anne Zachry 57:11
Yeah.

George Bailey 57:12
… by what I was hearing. I was like, “You’re literally advocating that this woman move rather than just paying for the cost of the bed?”

Anne Zachry 57:19
Right. Oh, yeah. It’s like, “How can …” All the things I see. The stories I could tell, trust me. I mean, that’s like the tip of the iceberg. And, and it always comes back down to, “We don’t want to …” It’s a “not out of my budget” mentality.

George Bailey 57:36
Yes!

Anne Zachry 57:37
It’s not out of my budget mentality. You’re …

George Bailey 57:39
Very short sighted.

Anne Zachry 57:41
… very short sighted. I mean, these are the same kinds of people who would rather criminalize a behavior and stick a kid in juvenile hall than pay for a BCBA to come in and provide a behavior program. And it’s like, well, you know, “Even though it’s going to cost the taxpaying public 10 times as much with, like, far more abysmal results to put them in the juvenile justice system, at least that’s like coming out of my budget.” And it’s like, “What? You’re gonna go home and pay taxes for that? Do you not understand this coming out of your personal budget?” And it’s just the lack of wisdom. And so it’s like, how did you get this job? You and I are encountering some similar issues just coming at it from a different perspective. And it this has been a very enlightening conversation, this has given me a lot of things to think about. I’m going to have an ADHD spin-off in a minute, and, you know, a-million-and-one ideas are going to pop in my head. But well, thank you very much for doing this with me today, I think we’ve covered a lot of ground. And this is a lot of information for people to digest, I will very, definitely make sure that I’ve got links to all of your stuff, you know, it’s going to be something going to be sharing with the other professionals that I work with as well, so that they are aware that this is even an option. And as we encounter these kinds of things in the field, we now know, we have got this potential tool in our toolbox that we can at least attempt to see if it’s going to work. I mean, again, trial and error when you’re talking about technology.

George Bailey 58:57
You never know, but when it does, it really rocks. And, seeing the changes that we see, like, we’re talking about four hours of sleep a night; all of a sudden, ten hours of sleep.

Anne Zachry 59:06
Oh yeah, any kind of … any kind of change you can make with respect to sleep problems is always usually pretty noticeable pretty quickly. And so, you know that part of it, that’s the proven science is that improving sleep quality improves a whole bunch of other stuff. So really, it comes down to, you know, where does your product fit into improving sleep quality? Not, you know, so you don’t have to prove the sleep quality issue. It’s just you … it’s about, you know, showing how your product fits in with it. So I’m excited to see this and if you get some Airbnbs and stuff like that they’re willing to take these on, yeah, share us the links for those guys, too, because we’ll put that out there for people to go and check it out and try it and see what they think.

George Bailey 59:45
Absolutely. Thank you …

Anne Zachry 59:46
Thank you.

George Bailey 59:48
… so much! More than anything, it’s been fun.

Anne Zachry 59:50
Well, thank you! It has been. It has been. Well, much appreciated.

George Bailey 59:55
Thank you.

Anne Zachry 59:55
You’re so welcome.

Anne Zachry 59:57
Thank you for listening to the podcast version of, “Interview of George Bailey, President of ZPods. KPS4Parents reminds its listeners that knowledge powers solutions for parents and all eligible children, regardless of disability are entitled to a free and appropriate public education. If you’re a parent, education professional or concerned taxpayer and have questions or comments about special education related matters, please email us at info@kps4parents.org or post a comment to our blog. That’s info at K as in “knowledge,” P as in “powers,” S as in “solutions,” the number 4, parents P-A-R-E-N-T-S dot O-R-G. We hope you found our information useful and look forward to bringing more useful information to you. Subscribe to our feed to make sure that you receive the latest information from Making Special Education Actually Work, an online publication of KPS4Parents. Find us online at KPS4Parents.org. KPS4Parents is a nonprofit lay advocacy organization. The information provided by KPS4Parents in Making Special Education Actually Work is based on the professional experiences and opinions of KPS4Parents’ lay advocates and should not be construed as formal legal advice. If you require formal legal advice, please seek the counsel of a qualified attorney. All the content here is copyrighted by KPS4Parents, which reserves all rights.

Fecal Smearing, Disability, and the January 6, 2021 Insurrection

This is not a pleasant topic at all, so I want to start out this post/podcast with the understanding that I know this isn’t a pleasant topic. That doesn’t make it something to avoid, however. Problems aren’t solved by pretending they don’t exist.

For those of us who work with people with significant mental disabilities, fecal smearing, otherwise knows as “scatolia,” is a behavior we usually encounter among individuals with significant developmental disabilities and dementia. These behaviors often happen among these populations very frequently alongside other bowel-related health issues, such as constipation and encopresis. Simply put, constipation is poop not coming out and encopresis is poop not staying in.

The function of most fecal smearing behaviors appears to be communicative, especially among individuals who are nonverbal or have limited verbal abilities. In verbal individuals who engage in these behaviors, other significant mental impairments are still present, whether its the loss of mental functioning due to dementia; the failure of mental maturity due to developmental disabilities, such as intellectual disabilities and/or autism; or some forms of mental illness. Fecal throwing and smearing can also be seen among other primates. It’s a primitive, infantile behavior.

When I was 20 years old, I worked in a nursing home providing hands-on care to medically fragile and/or mentally compromised elderly people. All of us knew who the poop-throwers were. The one on my wing was also an Evangelical Christian who would sing church hymns while throwing her poop at anyone passing by and accusing them of being the Devil. The exception was the visiting Evangelical pastor who would stop by to visit the patients every week, but he would come down the hallway singing a hymn at the top of his lungs so she would know it was him before he walked into her room, or he would get it, too.

I encountered fecal smearing behaviors once again when I finished my undergraduate degree and started working as a job coach in the community with adults challenged by developmental disabilities. One of the young men on my caseload was a fairly capable individual with autism who, in spite of his many attributes that made him employable to bus tables, serve drinks, and perform general maintenance in a restaurant, would engage in fecal smearing whenever someone made him upset. What had started as a behavior when he was younger with less language abilities had become a deeply entrenched learned behavior that followed him into adulthood long after he had developed completely intact verbal communication skills.

The differences between these two examples from my own life were important to note. In the nursing home, the woman on my wing with fecal throwing behaviors was kept on laxatives so that her feces wasn’t solid enough to hold in her hand for throwing. Cleaning up bedpans was infinitely less work and trauma than jumping into the hazmat shower fully clothed and going home in scrubs from the supply closet because our own clothes had been ruined.

By comparison, the young man who struggled to hold onto a job and a group home placement because of this behavior was successfully broken of the habit through Applied Behavioral Analysis (ABA), Cognitive Behavioral Therapy (CBT), and psychotropic medication management to address anxiety and depression. Because he was verbal, he was able to talk with his therapist about the feelings he was having when he engaged in these behaviors and we were able to come up with a plan that helped him deal with those feelings appropriately, eventually extinguishing the scatolia altogether. He’s been employed every time I’ve encountered him since, mostly in the community eating at the restaurants where he has worked.

What we discovered based on what he was telling us is that, historically, he had found himself in situations where he couldn’t tell people what he was thinking for lack of language and, later, as the language started coming on, because he was afraid to complain about certain things for fear of retaliation or punishment. The degree to which he was correct in his perceptions about those past experiences is not as important as the fact that he was afraid to say anything with words, but he could express himself non-verbally through fecal smearing.

Fecal smearing behaviors tend to orient around protest, disagreement, and retaliation, based on what little research has been conducted on the topic so far. Most of the available research comes from mental institutions and long-term care facilities. I could find no research about fecal smearing happening in the general community, though such research may exist and I just couldn’t find it. So much of the research is hidden behind paywalls that it’s not accessible to everyday people, which is a topic of discussion all to itself for another time.

I brought this subject up in my book club last night (we’re currently reading The Gifts of Imperfection: Let Go of Who You Think You’re Supposed to Be and Embrace Who You Are, by Brené Brown, PhD, LMSW). One of the other club members shared that her home had been broken into years ago and robbed. The robbers also pooped on her wooden floors, ruining the finish, and she had to wait for a year-and-a-half to have the time and money to refinish her floors, with the damaged spot where the poop had been, serving as a daily reminder of the sense of violation she had experienced. Now that I think about it, the same thing happened to my grandparents in the 1990s while they were on an RV trip, only the poop was on their walls.

My book club friend stated the police officers who had responded to the call advised her that this was a common behavior witnessed among break-in robberies like hers. Law enforcement may be a better source of information about the prevalence of fecal smearing in the general community, which goes to the degree to which we have delegated the responsibilities of our mental health agencies to law enforcement. Behavioral researchers should look there for data about the frequency with which these incidents occur and how they are addressed.

Needless to say, there was no scholarly research I could find that was specific to the fecal smearing behaviors that happened during the Insurrection of January 6, 2021, at the Capitol of the United States of America. Only official records from the government and reports in the media capture the incident. I’m quoting the Trial Memorandum of the U.S. House of Representatives from the second impeachment proceedings against the 45th president of the United States, here:

Once inside, insurrectionists desecrated and vandalized the Capitol. They ransacked Congressional Leadership offices—breaking windows and furniture, and stealing electronics and other sensitive material. They left bullet marks in the walls, looted art, smeared feces in hallways,and destroyed monuments … [Emphasis added.]

This has been bothering me ever since it was first reported shortly after the Insurrection that fecal smearing had occurred during this incident as well. Based on what I already know about fecal smearing behaviors, what that tells me is that at least one person with profound disabilities was among the Insurrectionists.

Based on the other overt behaviors of the Insurrectionists, it’s safe to say that America’s mental health crisis reached an apex of sorts, though it isn’t done showing itself, yet, based on the continuing domestic terrorism threats we all still face. It’s an Extinction Burst of a sort, and one we cannot afford to reinforce. These individuals are seeking reinforcement for behaviors that were once rewarded and escalating their behaviors when the rewards are not forthcoming.

I think they’re all cries for help, but the behaviors are so off-putting to most other people that they are disinclined to help and eager to ostracize anyone engaging in them. I think ostracizing these people helps the rest of us avoid the unpleasantness of dealing with these behaviors, but it’s not a democratic response, much less an ethical one. We need a plan as a people on how to solve these problems, not punish people for having them. I’m not saying that people who commit crimes shouldn’t pay for them. I’m saying that the causes of criminal behaviors have to be addressed so they don’t happen in the first place. There is way too much money being made on incarcerating Americans instead of helping them.

The bigger concern for me, these days, though, is how many other people in positions of power actually understand the severity of our nation’s mental health crisis and choose to exploit these individuals rather than meet their needs, such as the 45th president of the United States, for example. Protest, disagreement, and retaliation are the usual communicative functions of fecal smearing, and the Insurrection-related fecal smearing doesn’t appear to be different in that regard. Everyone involved in the Insurrection was there to protest, disagree, and retaliate. What this specific form of communication tells us is that the people who engaged in it felt desperate enough to express their feelings through these actions rather than words, as if words had failed them and/or they didn’t feel safe to use them.

When people are mentally impaired and don’t fully understand everything going on around them, they can easily become confused, misled, and manipulated by others. They are often aware when others are mistreating them even if they don’t fully understand the hows and whys. They know when they find themselves in a disadvantaged situation and will harbor valid resentments about it, but they often don’t know who did what to make it happen, much less what to do to make things better.

When you have a right to be angry but you don’t know how to get out of the situation, and no one is stepping up to help you, it’s easy to become angry at everyone. You feel like the whole world is against you and there’s nothing you can do. At that point, you default to the highest stage of social emotional development you’ve completely mastered, which may be well below your chronological age depending on the degree to which your social emotional development was healthy or not. Once someone becomes so overwhelmed emotionally in the absence of a solution that they start freaking out, very childlike – even infantile – behaviors are likely to ensue.

In the name of “liberty” and “freedom,” we’ve absolved ourselves of any responsibilities for the welfare of our neighbors. Personal liberty becomes confused with narcissism. People pay lip service to the ideals of the Constitution while exploiting their neighbors for financial gain. Money is an imaginary construct that many people value more than human life.

Many of these same people claim to be true believers in Christ, effectively singing church hymns as they sling their poo at everyone else. I don’t recall any part of the New Testament encouraging that kind of behavior, but religious scholars who have studied the texts more closely than I have are welcome to correct me if I’m wrong.

Most of us understand that the people who got sucked into the 45th president’s own mental health crisis are also not well, but they also account for approximately one-third of our population. That makes them a dangerous minority that has now grown into a domestic terrorism problem. It puts the assertions by the majority of Muslims around the world that Islam is not a religion of violence into context, now that we’ve got our own violent religious radicals here at home calling themselves Christians.

The inextricable intertwining of religion and mental health problems in societies is yet another topic for a separate conversation, but I have to point out that there are many responsible faith leaders struggling to lead as many of their congregationalists abandon the teachings of Christ to follow every wolf in sheep’s clothing that steps into their path. American commercialism and its own brand of capitalism have created a competitive mindset about everything in our culture.

It’s “My high school football team is going to crush your high school football team.” It’s, “My church is made up of the chosen and all the other churches are full of people going to Hell.” It’s, “My neighborhood is the best and everyone else lives in a dump.” Where is this narcissistic drive to be “better” than everyone else coming from in a society that’s supposed to be democratic? Why do we feel driven to create a caste of “losers” to make ourselves feel like “winners”? How does hurting other people make someone a “winner”?

People have developed brand loyalties around things that aren’t actually brands. American consumerism and its obscene obsession with the pursuit of material wealth has grossly undermined the uniform message of every great faith. Wanting more than what one needs while others go without contradicts every pious teaching of every great religious leader the world has ever remembered. We’re all supposed to be collaborating with each other, not competing with each other, to survive as a species.

Raising children from birth under conditions that deprive them of developmentally necessary opportunities to reach adulthood physically, mentally, emotionally, and spiritually intact, is an uphill battle. The science is clear that the type of family support system an individual has is irrelevant; what matters is whether they have any type of support system at all.

Children growing up in homeless shelters with after school tutoring, social services, higher education and job placement services for parents, etc., remain as academically intrinsically motivated as children living in traditional family homes with access to resources. The gender identity and sexual orientations of parents have zero bearing on the quality of their parenting. Parenting becomes poor when it fails to nurture childhood development, regardless of the gender or orientation of the parent.

What we can safely deduce from witnessing current events as it relates to the known science is that being raised in economic extremes, whether extreme poverty or extreme wealth, deprives children of developmental opportunities that undermine their mental, emotional, and communicative growth. Extremely wealthy children are at risk of never learning how to do anything for themselves and will implode the minute they have to deal with serious life challenges. Extremely poor children are at risk of malnutrition, homelessness, and other hardships that make mere survival the priority without the opportunities to work on any other part of their development.

As the middle class in America continues to disappear, we’re at risk of more and more people ending up at one economic extreme or the other and their children growing up thinking that humanity is truly divided as a matter of nature into two classes: the “haves” and the “have nots.” If that’s all they see growing up, the divide becomes a hard and fast expected part of society. What do you think happens to a society that is made up entirely of people who failed to reach developmental maturity? It goes Lord of the Flies pretty quickly, after that.

In my ever-worried imagination, under such circumstances, humans will return to the trees if we survive as a species at all. I keep thinking, “Maybe the bonobos will have a better go at sentience than we did.” It makes me want to teach them sign language just so I can tell them all the mistakes we’ve made and what to avoid. The first thing I’ll teach them is, “Use your words, not your poop.”

Returning to the present issue of poop-smeared threats to our democracy wrapped in Confederate flags, I have a theory about one particular aspect of the problem that I haven’t seen discussed in the news about the Select Committee’s investigation into the Insurrection of January 6, 2021. In my line of work, the Americans with Disabilities Act and Section 504 of the Rehabilitation Act come up quite frequently. When I see things that do not appear to conform with their requirements, they jump out at me.

Given that were clearly dealing with people struggling with mental disabilities of one type or another, and given that social media has been instrumental in feeding them misinformation while giving them the tools to organize, it appears to me that the social media algorithms are not coded in a manner that reasonably accommodates users with the types of mental disabilities that make them vulnerable to misinformation and recruiting tactics of foreign adversaries and domestic terrorists.

If anything, social media’s absence of reasonable accommodations in its coding for users with these types of mental issues is creating more domestic terrorists than we already had in the first place, suddenly taking them from the fringes of our society to a sizable, dangerous minority of violent people bent on overthrowing the government. In the absence of effective mental health interventions, the manipulators swooped in and weaponized our own neglected mentally impaired citizens against us.

What we don’t take care of will take care of us. That’s the whole reason that “being careful” is so important. “Being careful” isn’t about avoiding problems, it’s about being full of care. Being caring means being responsible for your community as well as yourself and your immediate loved ones. It takes a village, as they say, but if you neglect your village, you cease to be part of it.

We’re all different for a reason. Whether you’re a person of faith and see it as a component of our Creator’s Great Plan or you’re a secularist who sees it as a function of nature and evolution, or you’re like me and think that nature and evolution are parts of the Creator’s Great Plan, it’s an obvious fact that we’re all meant to be different by design.

The failure to appreciate the role that diversity serves for the balance of everything has led to efforts by a few unstable individuals who manage to acquire power and try to remake humanity over into a monolith, casting out those who, by design, cannot conform to their invented social hierarchies. This is the essence of discrimination. It’s what causes people with disabilities to be regarded as less than human.

Anyone who is discriminated against for any other reason should be empathetic to the discrimination experienced by people with mental disabilities that affect their behaviors, but our knee-jerk reaction is to be repulsed by the most extreme behaviors in which we see these people behave. These behaviors, while often intolerable and highly inappropriate, are still cries for help, we need to see them that way, and we need to collectively demand our elected officials to enforce the ADA and Section 504 when it comes to social media algorithms.

My theory is that, if we use the existing language of the ADA and, where applicable, Section 504, to compel social media platforms to stop preying on the weakest minds among us, it will not only create jobs for coders knowledgeable of the law, but also enforcement officials knowledgeable of the code. Rather than looking at the daunting task of coding the Code into social media platforms as an insurmountable challenge, it should be seen as a significant step towards true democracy that creates desperately needed jobs.

The solution would solve more than one significant problem in this country and serve as an example of adult-level problem-solving for the rest of the world. Marketing research tells us that customer loyalty is greater after a vendor has had to work with a customer to solve a problem than if there was never any problem at all. It’s not a source of shame for America to trip over its own feet and experience growing pains as it sheds the hypocrisy and anti-democratic practices of the past; what makes it shameful or not is how we respond.

If we can bounce back from the threats our democracy is facing right now with science across the board in every domain of need, including our nation’s ongoing mental health crisis, and enforce the ADA and, where appropriate, Section 504, on social media platforms, no additional regulations are necessarily needed. If any other regulations of social media become necessary above and beyond that, so long as the First Amendment is still protected while also preventing troubled people from getting sucked down the rabbit holes of conspiracy theories, we’ll redeem ourselves in the eyes of the world. At least, that’s my theory.

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

“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.

Using ABA Principles to Navigate the IEP Process

Photo credit: Joe Loong

One of the things I’ve been trying to get across to people for years is the understanding that Applied Behavioral Analysis (ABA) is a science, not a special education service, much less a service specifically for students with Autism Spectrum Disorders (ASDs). The confusion arises from the fact that instructional strategies and behavioral interventions based on the principles of ABA, which work with all learners, just so happen to also work for students with ASDs and often it’s the only approach that does.

As such, the demand for ABA-based programs for students with ASDs, and the peer-reviewed research around its efficacy with this particular population, has resulted in confusion among the lay public as to what ABA actually is. Because so many people in public education and the families that rely on it only see ABA used with respect to ASDs, they think that’s all it’s for, and this is a gross failure on the part of the professionals who know otherwise to set things straight.

This is why I’ve been trying to get this point across for so long. Knowledge powers solutions for parents, which is the whole reason our organization exists. The absence of relevant knowledge on behalf of any of the stakeholders in the IEP process can prevent students with disabilities from getting the kinds of help they actually need, so a failure to appreciate that ABA applies to anyone or anything that behaves can have dire consequences for students who would benefit from ABA-based interventions, even if they have conditions other than ASDs that create these needs.

That’s a whole conversation unto itself, but that’s not the focus of this post. Because ABA applies to anyone and anything that behaves, it therefore applies to all the members of a student’s IEP team. For parents, the science of ABA can be not only constructive with respect to developing an appropriate IEP for their children, but also in navigating the behaviors of the other IEP team members during IEP meetings and related exchanges with public education agency personnel, which is what I’m focusing on in this post.

To be clear, ABA is not a method or strategy. It is a way of describing behaviors according to how they naturally occur. When it is used to make something happen, it’s all about how to interact with others in a way that promotes the behaviors we want to see from them. Used ethically in a team context, it keeps conversations productive and collaborative. However, the proverbial snake oil salesman “selling ice cubes to Eskimos” abuses ABA as part of a con to manipulate people’s behaviors for personal gain at other people’s expense.

The thing to understand is that ABA is a reality-based approach to understanding what is going on and planning what to do about it. It isn’t an invention; it’s simply a tool that measures what already is. That data can then be used to change how things are. So, it’s not like I can give you a checklist of things to do, whether you understand them or not, and you’re off and running. You need to understand the underlying science, which I’m going to grossly oversimplify here to make the concepts as digestible as possible.

Before I launch into what ABA is, I first have to back up and explain the three key tenets of science. Science relies on:

  • Determinism – an understanding that there is a logical, evidence-based explanation for everything in existence.
  • Empiricism – an understanding that every evidence-based explanation can be described in quantifiable terms using fixed increments of measure.
  • Parsimony – the understanding that the simplest explanation that fits the measured evidence is the correct explanation.

That’s not an ABA-specific thing. That’s how all science works, and ABA is a science.

Like a financial audit, science renders reality down into measurable bits that can be analyzed for black-and-white, yes/no answers, regardless of what is being discussed. There is a reason that “accounting” and “accountability” share a common root word. Financial audits examine accounting records for accuracy because those records are supposed to account for where money has gone or will go. For this reason, accounting is actually a science.

All other forms of science account for things the same way, measuring what is according to fixed increments of measure and giving us an accounting of what is really going on. Such is the case with ABA.

The increase of neo-fascism in America, in which science is frequently denied, is really a rejection of accountability and/or a significant detachment from reality consistent with mental illness. It’s about skewing numbers (like the 45th President attempting to offload COVID-infected cruise ship passengers at the beginning of the pandemic onto Guantánamo Bay so as to prevent the numbers of infection cases in the United States from going up) or otherwise pretending the numbers are untrue (like “The Big Lie” told by the 45th President regarding the vote count in the 2020 Presidential election), so as to avoid being held accountable.

Science is all about explaining reality using numbers, which requires the application of mathematics. There’s only one right answer to a math calculation. It never ceases to amaze me the number of people who grasp this concept when it comes to money, but not with anything else.

These are generally the kinds of people who own profitable businesses and use their money to hire private jets to fly to Washington, DC, so they can attempt to violently overthrow our government because they fear accountability and equate any perceived loss of privilege or unfair advantage with oppression. Oppressed people can’t afford private jets, in case you were wondering. These are also the kinds of people who end up in handcuffs over cooking their companies’ books, once the accountability finally catches up with them.

When you understand science as a form of accounting for anything that exists in numerical terms, just as with money, it isn’t possible to take it as an affront to your belief system, unless you believe things – or are trying to convince other people to believe things – that are not true. There is no rule that says we have to like the truth.

An intact person will acknowledge an undesired truth and deal with it. A person engaging in disordered thought will attempt to argue against it and assert beliefs unsupported by evidence as fact, thereby confusing opinion with fact and arguing against what they don’t want to be true as though it really isn’t.

As a parent going into the IEP process, you need to stick to the facts. An IEP is all about measurable annual goals that describe what your child is supposed to be taught and how to measure the degree to which your child learns from that instruction. Services are determined on what is necessary to achieve the degree of success targeted by the goals and placement is determined according to what setting(s) are the least segregated from the general education setting in which the services can be delivered such that the goals are met. The entire process hinges on the appropriate application of the relevant sciences.

As a parent, know going into the IEP process that it is scientifically driven and, therefore, relies on measurable facts to inform your child’s educational planning, plus it must do so according to the rule of law. The whole system was designed with the education agency’s accountability to the individual student and the student’s family in mind, which is why it boggles my mind every time I encounter anything but that in the IEP process.

Specifically with respect to using ABA to navigate the behaviors of the other team members as a parent attempting to exercise your federally protected right to meaningful participation in the IEP process, there are some ABA-specific concepts you first need to understand. The first concept is that of ABC data collection and the second concept is that of reinforcement.

ABC data collection is a process used to determine the function(s) of a specific behavior. The “A” stands for “antecedent,” the “B” stands for “behavior,” and the “C” stands for “consequence.” Each of these has a specific operational definition in ABA, and any deviation from their respective definitions means whoever is taking the data is not actually practicing ABA.

An antecedent in ABA is whatever happened right before the behavior that triggered it. When you’re talking about students, the presentation of a task demand can be the antecedent to a challenging behavior being addressed by an IEP, for example. When you’re talking about corrupt and/or incompetent public agency officials in an IEP meeting, the presentation of a parent request could be the antecedent to some kind of challenging behavior displayed by educational agency personnel, as another example.

The behavior in the ABC data collection process is the actual observable behavior being addressed. In the example involving a student just given, let’s say the challenging student behavior upon the presentation of a task demand involving a worksheet, is verbal aggression while tearing up the worksheet. In the example of a difficult IEP team member, let’s say the challenging behavior upon the presentation of a parent request is a bunch of hyperbolic excuse-making and changing the subject.

The consequence in ABA data collection is the immediate outcome produced by the behavior, specifically the pay-off the individual gets by engaging in it. This is an important distinction because it is often inaccurately reported in school-based behavior assessments, where the previous century of relying on a punishment model of behavioral intervention regards “consequence” as something meted out by staff. That is wholly inaccurate. Anything the staff does in response to the behavior, whether it works or not, is a “reactive strategy,” not a “consequence” within the meaning of ABA.

The point of identifying the actual consequence achieved by engaging in the behavior is to determine the function served by the behavior for the individual engaging in it. Once the function of the behavior is understood, you can choose how you want to respond to it in a constructive way. When you don’t know the actual function of someone else’s behavior, you can respond to it in a way that hurts more than helps the situation. Identifying the function of an inappropriate behavior is entirely necessary before an evidence-based approach can be developed to address it.

So, using the examples I just gave, let’s say that the consequence of the student engaging in verbal aggression and tearing up the worksheet upon the task demand being presented is to escape/avoid the task demand. With respect to an IEP team member engaging in hyperbolic excuse-making and changing the subject when a parent makes a request, the function of the behavior is to escape/avoid addressing, much less honoring, the parent’s request.

In both of these examples, the function of each of the hypothetical behaviors described were both escape/avoidance, but this is not the only function a behavior can serve. Behaviors happen for only one of two reasons: to get something or get away from something.

As such, behaviors can be reduced to a one or a zero, depending on whether its function was to get something (1) or escape something (0). Even the most complex behaviors can thus be reduced down to simple binary code as the most parsimonious way to describe what is happening.

In ABA, the functions of a behavior are typically described as access/attainment, escape/avoidance, and automatic. Automatic reinforcement speaks to behaviors that address internal drive states, such as physical wellness and emotionality, but even those are based on access/attainment or escape/avoidance. Sensory-seeking and/or sensory-avoidant behaviors are based on automatic reinforcement for someone with sensory processing issues based on their unique neurology, for example.

That leads us to the second key concept of ABA that you need to understand, which is that of reinforcement. A reinforcer is anything that increases the likelihood of an individual engaging in a specific behavior in response to a specific antecedent. If the consequence of the behavior is reinforcing, the individual will continue to engage in it whenever that specific antecedent is presented in order to achieve the reinforcer.

For example, if you get hungry (antecedent) and go put money in a vending machine and push the right buttons (behavior), you will get food (consequence). The function of the behavior is access/attainment of food to satisfy your hunger. It’s pretty simple.

Reinforcement can be positive or negative, but these are not judgments of “good” or “bad.” Just as with magnets, the poles of the Earth, and batteries, the terms “positive” and “negative” have specific meanings within ABA that are also frequently misunderstood in special education behavioral interventions. In reality, when it comes to ABA, “positive” means “to present” and “negative” means “to withdraw.”

Positive reinforcement, therefore, is the presentation of something that is likely to reinforce a specific behavior. Negative reinforcement is the removal of something unwanted in order to reinforce a particular behavior. The aforementioned vending machine scenario gives an example of positive reinforcement because food is presented in response to the behavior of putting money into the vending machine and pushing its buttons. Both forms of reinforcement were best explained scientifically back in the early days of behaviorism by B.F. Skinner using what came to be referred to as a “Skinner Box.”

In Skinner’s positive reinforcement experiments, rats in a cage were taught to pull a lever in order to access food pellets. At first, pulling on the lever was accidental, but as soon as food came out, the rats quickly learned that engaging in the behavior of pulling the lever resulted in the presentation of a food pellet. The presentation of the food pellet reinforced the pulling of the lever.

In Skinner’s negative reinforcement experiments, rats in a cage with an electrified floor that delivered mild shocks to their feet learned to pull a lever in order to turn off the electrification of the floor. Again, at first, pulling the lever was accidental, but as soon as their feet were no longer getting zapped, the rats quickly learned that engaging in the behavior of pulling the lever resulted in the termination of discomfort caused by the electrified floor of the cage. The removal of the electrification reinforced the pulling of the lever.

In both cases, the behavior of pulling the lever was reinforced. It’s just that one form of reinforcement provided access to something preferred and the other removed something aversive. Again, this can all be reduced to getting something (1) or getting away from something (0).

In the IEP process, you’re either getting what you want for your child or you are not. The public education agency personnel are either satisfying their agency’s agenda or they are not. The whole situation is riddled with ones and zeros depending on what you are talking about and who is involved.

Again, this is all a gross over-simplification of these basic ABA concepts. There are other considerations that have to be taken into account, such as setting events, otherwise known as Motivating Operations (MOs). MOs increase the likelihood of a specific antecedent triggering a specific behavior.

In our previous example regarding the student becoming verbally aggressive and tearing up a worksheet upon the task demand being presented, it could be the case that the student normally complied with task demands but, that particular day, the student had a stomach ache and didn’t have the concentration and stamina to engage in the task when it was presented. As such, the antecedent was still the presentation of a task demand, but that antecedent occurred in the presence of the MO of a stomach ache, and the consequence was still to escape/avoid the task demand.

Similarly, in our example previously regarding education agency personnel engaging in hyperbolic excuse-making and changing the subject in response to a parent request for something, it could be the case that said personnel would have normally agreed to honor the parent’s request, but that morning there had been an agency budget meeting in which personnel were told they would be subject to disciplinary action from the agency if they committed the agency to services for students that cost more than a certain amount, which is illegal but nonetheless happens all the time. As such, the antecedent was still the parent request, but it occurred in the presence of the MO of a threat of disciplinary action against agency personnel for committing the agency to costs it didn’t want to have to bear, and the consequence was still to escape/avoid honoring the parent’s request.

Sometimes you don’t know what all the MOs are because the education agency personnel won’t make them known to you. In many instances, the only way you know something is wrong is because the presentation of an antecedent results in a behavior that produces a consequence that doesn’t fit what should be happening. In that case, you know something is wrong because the behavior doesn’t fit the situation, at which point you have to ask yourself, “What is the function of this behavior?” It’s pretty obvious that any “no” response you receive is an escape/avoidance behavior; it’s just sometimes hard to know whether what is being avoided is cost, accountability, or both.

For example, data collection practices in special education throughout the country are generally pretty unscientific and shoddy in spite of a federal mandate that special education be delivered according to the peer-reviewed research, which is all scientific, according to measurable annual goals. As black-and-white as the process is supposed to be, it often isn’t because school personnel 1) have no idea how to do it correctly, and/or 2) are attempting to avoid accountability.

In most cases, it’s been my observation that the initial inappropriate behaviors are a consequence of incompetence, which creates a need to pursue accountability, at which point they engage in cover-ups to try to avoid getting into trouble for the errors of their ineptitude. You have to assume as a parent going in that not everybody on your IEP team knows everything they should and that they may respond unethically when they get called out on their errors. In other situations, public education agency personnel are just grifting the system for a government paycheck at taxpayer expense from the outset and see students as a means to their own financial ends, engaging in cover-ups when their self-serving behaviors become exposed.

As a parent going into the IEP process, you have to be a shrewd negotiator. If you don’t understand the functions of the behaviors of the other IEP team members, you are at risk of being robbed blind by unethical public servants and/or otherwise getting a poorly developed IEP from inept public servants.

It’s not on you to know all of the science and law that applies to your child’s situation, but if you can develop your skills at reading the behaviors of the other IEP team members, you can often figure out whether they are acting according to your child’s actual needs or not. At that point, how you respond becomes the next hurdle to clear.

Every situation requires its own analysis and there is no way I can give you a one-size-fits-all solution, here. What I can tell you to do is pay attention, try to get a sense of the function of someone’s inappropriate behavior as best as possible, and offer reinforcers in order to achieve the behaviors you want to see.

For example, send a thank-you card to the school psychologist who actually threw down on an excellent report and you will positively reinforce legally compliant behavior. Or, withdraw a compliance complaint if the agency remedies the problem that compelled you to file it and you will negatively reinforce legally compliant behavior. They can earn a food pellet or stop their feet from getting zapped, metaphorically speaking, but, either way, they’re going to have to pull the lever. If you can keep these concepts straight, you will be in a much better position to effectively participate in the IEP process.

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.

School Personnel, Conspiracy Theories, & Child Welfare

School Personnel, Conspiracy Theories, & Child Welfare
Christine Priola, OT, on the right in the Vice President’s Office of the Senate during the January 6, 2021 insurrection at the Capitol in Washington, DC

On January 6, 2021, a group of people, radicalized by false propaganda generated by the 45th President of the United States and his co-conspirators, attacked the United States Capitol with the intent to kidnap and/or murder members of Congress and the Vice President. This is an event that will live in infamy for so long as America remains a nation, and be blamed for it if it does not.

I’ve been working in special education advocacy, helping parents protect their children with disabilities from physical, emotional, and educational abuse/neglect by the public sector, primarily the public school system, since 1991. By now, you would think there’s nothing new for me to see when it comes to all the ways that adults can do wrong by those among us with disabilities. Clearly, I was wrong.

These recent events at the national level have left me with a whole new set of concerns that I believe are important to talk about, right now. Not the least of these concerns is the fact that a profoundly mentally ill president, along with his pathologically self-serving sycophants, exploited the suffering of some Americans with mental illness and the unfounded sense of entitlement experienced by other Americans with mental illness.

In the end, it’s a bunch of people with mental health issues frenzying like piranha at the smell of blood in the water and taking down the rest of us with them. The inmates are literally running the asylum, right now, and the survival of us all rests on the shoulders of those of us intact enough to realize what is happening, and equipped to deal with it.

For the last 30 years, it’s been my observation – and one I’ve repeatedly shared – that there are individuals employed within the public education system who believe children with disabilities are expendable and unimportant. In a sea of deprived students in general, special education students are uniquely further deprived because of their disabilities.

It’s been my observation that these individuals see their constituents – in this case, our children – as a means to their own personal financial ends, and nothing more. When the costs of educating these constituents increases due to disability, they become a hated burden to those looking to profit off them.

It’s not like the public education system is doing that great by any of our kids, right now. It’s just that problems that impact education in general tend to have a magnified effect on our kids with special needs. Public school officials will say things like, “My heart is bleeding for your child. I wish there was something I could do,” when there’s totally something they could do. They just don’t want to pay for it, which is unlawful.

Special education laws would have not become necessary back in the 1970s if it were not for the fact that people who do not believe in science or law were already employed in positions of authority within the public education system and engaging in unconstitutional conduct towards children with disabilities at that time. The public schools would refuse to enroll these students at all or, even if they did, let them languish in general education classes until they dropped out.

In spite of compulsory education laws, back in the day, it was totally okay to drop out of school if you couldn’t keep up with the instruction and nobody would come after you for truancy. This was what happened to a lot of people with relatively mild challenges, like learning disabilities, who ended up reaching adulthood functionally illiterate and unable to find gainful employment except as factory workers, coal miners, and all the other dangerous jobs that don’t require academic skills, in spite of their normal intelligence.

I provided adult literacy instruction to this population at a local vocational/technical college as a young adult in Arkansas. I’ve met these people. I’ve seen this play out, first hand.

This has led to a class of individuals who have increasingly lost the ability to support themselves, as robots take over dangerous jobs that don’t require real thinking. While the laws that passed in the 1970s were the right place to start, it’s foolish to think that enough has changed since then that the system isn’t still biased against kids with special needs. If things had changed, I’d have worked myself out of a job a long time ago.

The public education system is biased against any kid who isn’t white, male, and expected to inherit property upon reaching age of majority. It was created in its present form during the Industrial Revolution and hasn’t changed much since.

For the longest time, public education agency administration was male dominated while the teaching staffs were female dominated, putting men in authoritarian control over women employees. Teachers unions grew out of the very real discrimination and abuse of women in the public education workplace by their male “superiors” around the same time that unions gained popularity among the laborers working ot inher dangerous jobs in factories and mines.

Students, however, have no collective bargaining power. Even though they are the reason the system exists, they are the last individuals served by it. They get whatever leftovers are left after public agency administrators bleed their agencies dry with undeserved six-figure annual salaries while teachers are buying classroom supplies with their own money. Students are just an excuse for politicians to pay themselves.

So, the idea that discrimination and abuse do not manifest in the public education sector is plainly inaccurate. There are mountains of evidence to the contrary, my caseload being only one such mountain. The judicial and legislative history of special education law is not the total point, here, but it’s relevant in that it establishes that bad actors in public education have made it necessary to regulate public education to control for their inappropriate behaviors.

The evidence of bad faith in public education has been documented in the courts long enough that I don’t have argue it, here. That’s a done deal. So, when someone tells me they are worried about child welfare at the hands of government officials, I have to say, “Me too! That’s why I’m a child and family advocate.”

However, now when someone tells me they are worried about pedophiles in public education, I have to do a double-take and ask, “Why?” That’s only because of the whacky Q-Anon and similar conspiracy theories, now going around about Satanic cannibals molesting and trafficking children.

It’s not that human trafficking isn’t real or horrible. It’s that there is zero proof that it’s being perpetrated by the people these conspiracy theorists are targeting.

There is proof, however, that the 45th President was pals with a known, convicted pedophile and wished this pedophile’s co-conspirator well when she, too, got arrested. He’s also been accusing of raping a 13-year-old who was made available to him by this same duo of pedophiles, but these conspiracy theorists are not going after him. They think he is the champion of their cause, which defies logic in every possible way.

Even if the allegations of child rape cannot be sustained against #45, he’s sexually assaulted plenty of women and bragged about it on the record. How he’s become the champion of a human rights cause given his history of sexual assault and his policies regarding the children of lawful asylum-seekers at our borders is beyond me.

We have all seen news stories of the occasional teacher, aide, specialist, or administrator who gets busted for sexual relations with their students. It’s not that pedophiles are not employed within public education; we know some have slipped in and we do a poor job of screening them out, often only finding them after the harm has been done.

The more important point is that a ring of cannibalistic pedophiles do not run public education. The average school district administrator doesn’t come anywhere near actual children. They don’t appear to care for the company of children; they just want to exploit them for public dollars.

While I don’t doubt that there are people employed in public education administration who would gladly traffic in humans if they thought they could turn a profit and get away with it, that’s a whole lot of work to make happen within the public education system and not get exposed. It’s easier to milk the broken system as it is without taking on that risk. They can get rich by lazier means than selling their students into slavery.

As soon as someone gets caught engaging in pedaphilia with students in the public education setting, most school districts are the ones that call the cops. If school district administrators come to an accused educator’s defense, it’s either because the educator was wrongfully accused or because the administrators don’t want to be held accountable for the fact that they let a pedophile come work for their public education agency, so they’re trying to convince everyone that they didn’t.

It’s not that public education isn’t being run by a pack of corrupt jackals. By and large, like local police departments, local school districts get away with as much as they do because they only answer to their local constituents, most of whom don’t know how to monitor and audit a school district on an ongoing basis for compliance issues. Jackals are in gross abundance.

Even the most ethical educators can be corrupted once they are promoted into administration, and I suspect most of that is economics. Once they start getting that six-figure annual salary, they start buying nice houses and cars, putting their kids through college, and going on expensive vacations. That quickly creates debt.

If you have a six-figure income, you can pay that debt, but if you lose that income and can’t replace it fast enough, you’re quickly screwed. This is how good educators get pulled into the Dark Side of the Force when they accept promotions into administration. It’s the rare pure soul that sees what’s really going on and refuses to be manipulated that way before it’s too late.

The overarching problems I see in public school administration are about money, not pedophilia or cannibalism. I’ve yet to encounter cannibalism, actually, but it’s only January 2021, so let’s see if this year tops last year for the most disgusting conduct to be revealed among public servants for the whole world to see.

What prompts me to discuss this, now, is the recent resignation of Christine Priola, an Occupational Therapist (OT) from Cleveland Metropolitan School District, one day before she participated in the January 6, 2021 insurrection against the American government. Ms. Priola occupied the Capitol building with other insurrectionists and was photographed in the Vice President’s office as part of the occupation.

In her resignation letter, Ms. Priola, who is currently out on bail pending trial, stated she was leaving her job as an OT for the District’s special education department for three specific reasons:

  • She refused to take the Corona virus vaccine before returning to in-person learning;
  • She disagreed with paying union dues because she believes that money is funding abortions; and
  • She’s embarking upon a fight against child trafficking by government agencies.

So, I’m going to pick these apart one by one, first, and then get into the rest of it.

First, it’s unclear if Ms. Priola is an anti-vaxer opposed to vaccines in general, is against the current Corona virus vaccine because it was rushed to market so quickly and she questions its safety and efficacy, or just resents being told she has to take a shot before she can go back to work. Maybe it’s a combination of those things.

We don’t know why she was opposed to the vaccine, so I can’t automatically lump her onto the science-denying anti-vaxer wagon with this limited amount of information, though her overall behaviors incline me to suspect that she could be an anti-vaxer. Because she’s an OT, which is a scientific discipline that functions within the medical and educational realms, I don’t want to assume too much, here. However, science is a fact-based discipline and Ms. Priola has not be operating according to facts.

When we look at her second objection, the total absence of logic casts an unfavorable light on the first objection, even further. How union dues, which pay for the administrative overhead of each union’s operations, somehow funds abortions makes no sense.

The district may withhold those dues from educators’ paychecks, but there is an audit trail that shows where that money goes. If you’re worried about where the money is going, you do a request for public records asking for the accounting details and turn them over to a grand jury if you find that the money is being misappropriated.

The rule of law already provides a remedy for the misuse of public funds. You don’t raid the Capitol with the intent of hanging the Vice President to death to resolve issues such as these.

The idea that the rule of law had collapsed to the point that it was ineffective cannot be argued, here. Ms. Priola did nothing on record to resolve the issue with where her union dues were going before resorting to the violent overthrow of the government and an effort to assassinate the Vice President.

The government already had a legal remedy that she chose not to access and the “remedy” she opted for instead did not fit the situation. This strongly suggests disordered thought. It also, however, goes to the degree to which legitimate remedies to harm done are often inaccessible to everyday Americans because they can’t afford to lawyer up every time the government shirks its responsibilities and hurts people. When the appropriate options are closed off to people, they are only left with the inappropriate ones.

This is where peaceful protests for changes to the rules become such an important part of democracy, none of which involves insurrection or execution. Insurrection as a more expedient option to litigation speaks to the degree to which the legal system is often unavailable to most people because of the associated costs, but it’s not a valid excuse for what Ms. Priola has done. Ease of access to remedy may have made it less likely that she wouldn’t have done something literally insane, but that’s speculative at this point.

The third justification for resigning given by Ms. Priola was that she’s embarking upon a fight to protect children from abuses by government employees. On it’s face, I can’t take issue with that because I’ve been fighting to protect children with disabilities – the same students Ms. Priola served as an OT – from abuses within the public education system for the last 30 years.

Very often, though, I’m protecting them against people like Ms. Priola who are so divorced from science and, therefore, reality that they engage in violations that require me to file complaints with regulators. Again, the rule of law provides a remedy. The difference between Ms. Priola’s efforts to protect children and mine is that I use science and law to protect my babies. She’s trying to kill the members of Congress most likely to help her protect children from the real predators.

I’ve never had to violently overthrow a government agency or hang anybody to protect a child from government employees. Has the rule of law let my babies down, before? Yes, in hugely significant ways. Has the rule of law protected my babies when I’ve pursued enforcement of it? Yes, more often than it has not. It’s not a perfect system, but insurrection on behalf of the people responsible for undermining it is not going to fix anything.

And, it’s not like I haven’t seen evidence of child trafficking in government agencies. I have, just not in public education. Specifically, I’ve been working on a separate justice project with our organization’s founder, Nyanza, to address the egregious over-incarceration of African-Americans in Oklahoma that dovetails with what may be State-sponsored child trafficking.

Based on the publicly available research data we’ve gathered to date, it appears there may be an orchestrated mechanism in place in which officials in the State of Oklahoma incarcerates people of color and remove their children from their homes through the Child Protective Services (CPS) system, only to place these children in privately owned foster care facilities and/or adoption agencies that operate for profit.

It appears that at least some of the foster care and adoption agencies in Oklahoma that participate in this dynamic are owned, at least in part, by State officials responsible for passing and enforcing the laws of Oklahoma, from which they profit. It should be noted that Oklahoma’s CPS system was found to have been responsible for the death, rape, and maiming of many children processed through this system via a federal class action lawsuit that resulted in a consent decree that is not being properly enforced.

CPS employees have come out as whistleblowers to advise that the “proof” of compliance with the consent decree is falsified information and Oklahoma isn’t taking this federal court consent decree as anything other than one more thing to lie about. It should also be noted that all of the individuals involved in these behaviors appear to be Republicans, or they were at the time the data we collected were gathered.

From what we’ve seen so far in our data, it appears that Oklahoma lawmakers and judges are incarcerating people so they can steal their children and sell them for profit. If true, that’s a legitimate State-sponsored human trafficking ring that needs to be shut down immediately. But, it isn’t a Satanic group of Hollywood actors and Democrats eating and raping children.

While this possible human trafficking ring has not been investigated as such to my knowledge, thus far, it’s one of those things that can’t last forever without someone getting caught. Nyanza and I are working to get enough evidence together to get the situation investigated, and she’s been filing documents this whole time, but that’s how you address these things. We are availing ourselves of the mechanisms of our imperfect, but better than anarchy, democracy to fix this heinous problem. Whatever is responsible for Oklahoma’s ridiculous incarceration and CPS numbers is a problem that needs to be fixed, regardless of what it is.

This is painful because we know of families suffering horribly because of what is currently happening until this gets resolved, but justice can take time. I’ve learned that lesson from 30 years of working cases from IEP meetings all the way up to the 9th Circuit Court of Appeals, and you don’t always win. But, you always make a difference, even when you lose on some technicality. I’ve had cases where we lost on an issue, but just barely. The involved districts knew the next time they pulled the same stunt, they wouldn’t necessarily get lucky again, and have changed their practices as a result.

What I’ve learned from relying on the rule of law to address failures of the system is that you have to look at things in the aggregate. It becomes a measure of how many things I’ve prevailed on versus how many things I have not, and I’ve prevailed on more things than I haven’t. Overall, my work is highly effective. On a day-by-day basis, it’s a mixture of resolution and being obstructed by law-breaking public servants.

You have to get to the point where you can identify when it’s time to negotiate and when it’s time to collect evidence and file a complaint of some kind. We have processes and procedures already to address all of the concerns raised by Ms. Priola’s resignation letter, none of which involve insurrection and execution of elected officials.

So, having said all that, now I have to turn to the issue of people who think like Ms. Priola who are still employed in public education. I first have to say that she may be in the minority, but we don’t know how large or small that minority is because they have not been outspoken within the public education context, thus far.

Further, because I have been dealing with disordered thought on the part of school district personnel that results in harm to children for the last 30 years, I’m willing to believe that people whose thinking is as impaired as Ms. Priola’s appears to be are still deeply rooted in special education, right now. Whether their disordered thought makes them vulnerable to Q-Anon and similar propaganda or not isn’t anything I can answer. But, Ms. Priola’s departure from science in spite of her scientific training is consistent with much of what I see in special education when things go wrong.

What this really comes down to is a concern that I’ve had for years and have spoken about with colleagues, but we haven’t really figured out the most appropriate way to address it. What is happening now and the national dialogue around it may have finally opened a door to deal with this issue, and that issue is the societal impact of having so many members of our population who are apparently incapable of logical thought when it comes to abstract concepts like justice, democracy, and fascism. And, it circles back around to the quality, or lack thereof, of our public education system.

One of the tools I regularly use, or request that it be used, in special education is a standardized assessment called the Southern California Ordinal Scales of Development (SCOSD). The history of what led to the SCOSD’s creation is a story unto itself, but suffice it to say that it is a scientific way of measuring all the different domains of development according to Piaget’s stages of development.

The SCOSD breaks development down by subtest into cognition, communication, adaptive abilities, social-affective functioning, and motor skills. It is possible for an individual to function at a higher developmental level in one area than other areas. Each person’s outcome on the measure paints a picture of their relative strengths and weaknesses across the developmental domains. When working with children and young adults with developmental disabilities, this becomes important to designing effective programs for each of them.

What I’ve come to realize from the data I’ve seen produced by the SCOSD over the years is that it is possible for someone to have age-typical cognitive and communication skills, but then have below age-typical social/emotional functioning. What this means is that their emotional development is delayed while their abilities to acquire academic and job skills are intact. They can emulate adult behavior, but their motivations are child-like because of their delayed social/emotional functioning.

When otherwise intelligent people get whipped up into an emotional frenzy over things not supported by any credible evidence, this disconnect between intelligence and social/emotional functioning is apparent. When otherwise intelligent people argue against evidence that they did something incorrectly, this same disconnect is again apparent.

This disconnect is what I’ve been fighting over the years more than anything else. Any reasonably intelligent and socially/emotionally intact person would not engage in the kinds of crap I encounter in the public education system. Most of what I encounter in the public education system is the consequence of ineptitude, not a cabal of cannibals.

If any kind of cabal exists in public education, it’s the same one currently running the American Presidency into the ground. All of this makes me think of the right-wing folks in Orange County, California, who started a non-profit membership organization, self-described as a “brotherhood,” of school district officials who would all pay membership dues and then use that money to finance legal battles against parents of children with disabilities.

It also makes me think of Lozano Smith, a law firm that infamously (within special education circles) got eviscerated by a federal court judge after trying to lie, cheat, and steal in a special education due process appeal. The firm, the responsible attorneys, and the district it was representing all got sanctioned for jerking everybody, especially the court, around with their lies.

All of the firm’s attorneys were ordered to participate in additional ethics training, in addition to the reprimand and sanctions meted out by the court. At the time, Lozano Smith had over 200 attorneys on staff statewide throughout California. Shortly thereafter, most of them jumped ship and went to different firms or started their own firms. It’s quite reminiscent of what we are seeing in Washington, DC, right now, as cabinet members and other high-ranking personnel turn their backs on the outgoing President in the wake of all the destruction and death he has caused.

Lozano Smith is still around, but I haven’t encountered them in the field in several years. The last big thing I saw from them was in 2013 when my colleague, David Grey, prevailed on a case at the 9th Circuit against two school districts engaging in the same violation of the Americans with Disabilities Act (ADA). At least one of the involved districts filed an appeal to the U.S. Supreme Court, but it was shot down; the Supreme Court declined to try the case.

When the Supreme Court appeal was first filed, Lozano Smith, which had been uninvolved at that point, wrote an amicus brief that looked like something that could have been produced by Sidney Powell and Rudy Giuliani. It made nearly hysterical arguments about how the 9th Circuit’s interpretation of the ADA would undo decades of precedent within the public education system, as though decades of an established practice of discrimination should be maintained.

The point is that the conservative “fringe” has never been the “fringe.” To quote Stephen Colbert, “Lunatic fringe? There were tens of thousands of people in that murderous mob. The day after the riot, a poll found that 45% of Republican voters backed the attack on the capitol building. That’s not a fringe! That’s almost half the outfit! If you wore a suit that was 45% fringe, you’d be arrested for public indecency! But at least we’d be able to see through your pants to know you don’t have any balls!“

Based on how scholars look at the political spectrum, conservatives have gone further and further to the right towards radicalization as the left has remained predominantly centrist. The far right looks at centrist politics and mischaracterizes them as the “radical left.” Democracy is not the radical left.

Conservatism is no longer part of democracy in this country; it’s become a movement towards dictatorship in which 45% of the population believes it needs to be led by the nose by a demagogue. When left to think for themselves, these individuals run towards authoritarianism, thinking these leaders understand their needs and will fight for them, rather than exploit them to help take over and then kick them to the curb when they no longer serve a useful purpose.

It’s my suspicion that, once the people who participated in the insurrection realize that the 45th President will let them rot in jail for taking up his cause while he claims to have nothing to do with any of them, his base will finally get the backstabbing that has been coming their way this entire time and will realize he’s not in their corner like they thought. We can at least hope getting stabbed in the back will have this effect.

We’re going to have to watch the prosecuted go through this epiphany over time as we try each of their cases one by one. The stories we’re going to hear from these people are going to reveal legitimate unmet needs, impaired problem-solving skills, and exploitation of those factors by Republican terrorists looking to radicalize them.

Those of these defendants with the mental wherewithal to realize they’ve been played and the emotional stability to own it will turn on those who exploited them, as have many former allies of #45, such as Michael Cohen. Those who don’t have the emotional stability to own the fact that they made a mistake in judgment will continue to assert they’ve done nothing wrong and describe themselves as political prisoners rather than criminal insurrectionists and traitors.

In the minds of the insurrectionists, as they’ve reported themselves, they were responding to the call of their President to defend democracy. If that’s what you’re really doing, defending democracy isn’t bad. But democracy relies on the rule of law. You defend democracy by participating in it and putting its mechanisms into constructive use, not trying to overthrow it.

If our democracy is not working for all of the people – and people of color, indigenous people, LGBTQ+ people, women of all stripes, and people challenged by disability can attest that it has not for a very long time – we need to fix it. What boggles the mind is that now that groups made up mostly of white males in this country are finally beginning to experience the lack of undemocratic entitlement and advantage they’ve historically known, their response to advocate for themselves is to engage in insurrection. This means that what they want is nothing a true democracy would ever give them, and that tells you all you really need to know about them.

There is absolutely a silver lining in all of this, and I rely on Applied Behavioral Analysis (ABA) to inform that determination. In ABA, there is a term that I’ve discussed in previous posts called “Extinction Burst,” and that’s part of what we are looking at with the current state of things. In an Extinction Burst, a behavior that had previously been reinforced is no longer being reinforced, and the organism tries to force reinforcement to come by escalating its behavior.

Think of it this way: If, every day, you put money in a vending machine and a candy bar comes out, the candy bar reinforces the behavior of putting money into the machine. But if, one day, the candy bar gets stuck and won’t come out of the machine, what do we do? Walk away sad? No! We beat on the machine in an effort to make the candy bar dislodge and come out.

That’s an Extinction Burst. If the candy bar dislodges and comes out, it reinforces the behavior of beating up the machine. If beating the machine doesn’t work, then you walk away sad. After than, you’re less likely to use the machine again. If you stop using the machine altogether, the behavior of putting money into it becomes extinct.

What is happening in this country with the radicalized right is an Extinction Burst. Behaviors engaged in by the right wing that were previously reinforced are no longer being reinforced. The behaviors of the 45th President, his co-conspirators, and his followers over the last five years, leading up to January 6, 2021, and what may still yet happen as the 46th elected President takes office, have been an extended Extinction Burst.

The most important thing about an Extinction Burst when you’re trying to extinguish an inappropriate behavior is that you cannot allow it to produce the reinforcement being sought. If you want someone to give up on the candy machine, there can be no way to beat the machine until candy comes out.

We want the radical right to give up on trying to destroy democracy, so we cannot allow their behaviors to result in the reinforcement they are seeking, which, here, is to remain in power regardless of the will of the people. This includes holding them accountable according to the letter of the law. That’s what I’ve been doing in my niche of governmental accountability for the last 30 years and it’s the only way to preserve democracy going forward.

The other silver lining, here, is that in spite of all their efforts to overthrow democracy, it’s our democracy that will ultimately prevail. When we apply the rule of law to what they have done, democracy will have the opportunity to defend itself.

What saddens and scares me the most is the number of people whose developmental weaknesses and mental health conditions are being exploited by the right wing to radicalize them into becoming domestic terrorists while convincing them they are upholding American principles through their terrorism. When we talk about the mental health problems in this country, we tend to point to homelessness and addiction issues, like this is the only way they can hurt us.

As an advocate for people with disabilities, I am torn between being sad for and fearful of these individuals. On the one hand, we absolutely need to hold them accountable under the law. But, we prove the point that the system is skewed towards specific demographics when mentally ill right wing radicals suddenly get criminal consequences and nothing to address the real-world problems that they couldn’t solve that propelled them into radicalism.

In the end, once again, it’s people with disabilities being used as political pawns by self-serving, undeserving, overpaid public officials looking to line their own pockets with taxpayer dollars as part of a grift. This is something I know all too well in special education.

I’m willing to believe, in light of the evidence thus far, that decades of special education failures have produced an entire class of emotionally disturbed adults who are still vulnerable to the manipulations of public officials and that Ms. Priola and many of her compatriots are among them. I’m also willing to believe, in light of the evidence thus far, that the people manipulating them are just as mentally ill; they just have money and power.

I will never pretend to have all the answers, here, but I do know a thing or two that can help. All of us do. We need to weave our efforts together to repair the fabric of our country and make it stronger than it was in the first place. It’s not impossible. This country’s founding was far more difficult than its current preservation and we can do this.

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.