Interview of Dawn Barclay, Author of Traveling Different: Vacation Strategies for Parents of the Anxious, the Inflexible, and the Neurodiverse

Anne Zachry 00:00 Welcome to Making Special Education Actually Work, an online publication presented in blog and 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 references 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. Today is April 28 2022. This post/podcast is titled, “Interview of Dawn Barclay, author of Traveling Different: Vacation Strategies for Parents of the Anxious, the Inflexible and the Neurodiverse.” In this podcast, which was originally recorded on April 1 2022, Dawn and I discuss her book and the challenges that children with various special needs can experience when it comes to going places in the community, including travel and vacations.

Anne Zachry 01:28 Thank you so much for doing this with me. So, you know, just to get started, if you could just introduce yourself, and then tell us about the book you’ve written and more or less the core issue that you were trying to tackle with it.

Dawn Barclay 01:40 Okay, terrific. So my name is Dawn Barkley and I have written a book called Traveling Different: Vacation Strategies for Parents of the Anxious, the Inflexible and the Neurodiverse. I have been a travel writer for the past 30-some years. I specialized in travel trade writing. And when I needed a book like this back in around 2008-2009, there wasn’t a book like this. So I wanted to write a book that would help the parents of children on the autism spectrum, as well as with mood and attention disorders. What I what I found was that the tips would help in a neurotypical family, as well. Anne Zachry 02:31 That stands to reason. I mean, that’s one of the things that research bears out, that when we start creating accommodations for people with special needs, that it turns out that it benefits everybody. I mean, look how people are now using text-to-speech to text when they send their text messages, right, you know, and that was started out as an accommodation. And now just people do it because it’s a convenience. And so it just becomes adopted as, “Well, of course. Why wouldn’t you use a calculator?” And so that totally makes sense that you would find overlap there that, you know. When you’re having to think very deliberately for someone who needs that level of deliberate thought in order to simply access the situation that, you know, it’s also going to benefit other people. So that’s an interesting finding that you’ve made.

Dawn Barclay 03:16 Well, I think it stands to reason also that when a child is taken out of their comfort zone, they can be anxious or inflexible, you know, everybody is a little out of it when they are out of their comfort zone. And children haven’t experienced those transitions as much as adults …

Anne Zachry 03:32 True.

Dawn Barclay 03:33 … they really need … It’s great when people take the time to really explain to a child what’s going to happen on a trip, or get them involved in the planning of a trip. So they have a vested interest in being successful. So little things that you can do like showing videos to a kid before they travel, so they know where they’re going. It’s not all super exciting …

Anne Zachry 03:54 No, it’s all it’s all common sense stuff. But it’s you know, when we’re talking about our special needs kids, these are things we would write it into, like, into an IEP, an accommodation for priming or front-loading, you know …

Dawn Barclay 04:06 Right.

Anne Zachry 04:06 … to warn them of transitions ahead of time, to give them a visual schedule so that the …

Dawn Barclay 04:11 Right.

Anne Zachry 04:11 … daily routine is predictable. And you know, and it really goes to … you’re right, it’s a fundamental human thing, that anxiety is about lack of predictability.

Dawn Barclay 04:20 Yes.

Anne Zachry 04:20 And when you don’t know what is coming next, it makes you anxious. And so you know, we all have our ways of dealing with that. And when you’re talking about kids, they haven’t necessarily develop the repertoire of skills …

Dawn Barclay 04:34 Right.

Anne Zachry 04:34 … and certainly as you were talking about a kid with special needs, the speed with which they’re acquiring coping skills may not be as quickly as, you know, typically developing kids who may pick them up through observation, whereas some of our kids may need to be explicitly taught.

Dawn Barclay 04:48 Yeah, you’re totally on target. And that’s what I found. And that’s what a lot of the advice revolved around is how to prep the child for each different type of trip. Whether depending on mode of transportation, or whether it evolved through restaurant or camping, or going to a hotel versus a vacation rental, any type of situation they might be put into, “How can we prepare?” and, “How can we smooth the way?”

Anne Zachry 05:16 Yeah, so that you know what to expect, and you’re not worried or freaked out and anxious. That totally makes sense. And yeah, and it goes to ecological control, too. And you said something interesting in your email to me when we were setting all of this up about how some kids may need to start small. And maybe it’s not even like an overnight trip anywhere, it’s like going to a garage sale, or, you know, just going through a novel environment of any kind. And just, it’s a skill that needs to be generalized. And so what …

Dawn Barclay 05:45 Yes.

Anne Zachry 05:46 … what was, what were your findings with regard to scaling and in scaffolding the complexity of the outings?

Dawn Barclay 05:54 Well, I have devoted a whole chapter to starting small, because I think it’s vital to preview what the trip is going to be like, before you actually do it. And you’ve got a lot of time and money and energy invested in it. And so a lot of it involved social stories, which I would imagine that …

Anne Zachry 06:13 Yeah.

Dawn Barclay 06:13 … you’re familiar with.

Anne Zachry 06:15 Yep.

Dawn Barclay 06:16 And also videos. But even before all of that, to do something small, like you said, like maybe if you’re planning a trip to Italy, you would have some Italian food and talk about currency, or maybe introduce some Italian words, and just try to teach children that there is life that out there that’s different than the way they experience it, and just make it fun for them. But also, like you said, like a garage sale, or a trip to the post office, any trip, you can take a child on can be a learning experience, if you couch it that way.

Anne Zachry 06:55 Right.

Dawn Barclay 06:55 I mean, I take them to a bakery that specializes perhaps in you know, like an Italian bakery or German bakery. And there are things that they’re not familiar with and little by little get them excited about maybe trying something new. Local festivals in your town might be a good short trip, or a zoo, or an aquarium. Any of those can start the child getting used to something that will involve maybe a tour later on, on a vacation. And you can always refer back and say, “Oh, remember when we went on that tour to the aquarium? You’ve sort of experienced that.”

Anne Zachry 07:32 You can even create a social story about outings in general based on past experiences on a smaller scale like that, and take photos and then, “Okay, well, when we go on the big trip, we’re gonna go to other places where we take a tour. You remember the rules for tours, right?” And …

Dawn Barclay 07:48 Right.

Anne Zachry 07:49 … and whip out that social story with pictures of them having successfully done it before, and it just reinforces “Oh, I can handle this.” So I think that’s really smart. Well, that’s really clever stuff. Well, so can people … where can people get the book? Is it on Amazon or other places? Where are you selling it?

Dawn Barclay 08:06 Right now it’s on pre-order. It’s coming out August 15. But it is on pre-order on Amazon, on the Rowman and Littlefield website, on almost any online retailer. And we’re hoping that we’ll be in libraries as well. Right now you can preorder in hardcover, or in audiobook.

Anne Zachry 08:27 Okay.

Dawn Barclay 08:27 The … that … you can’t preorder the digital the ebook yet.

Anne Zachry 08:31 Got it. Okay. That’s good to know. Well, we do have our own online store of books, that is really just Amazon, that we use for fundraising for our nonprofit organization and to put useful tools in the hands of the families we serve. And so if you’re listed on Amazon, that’s easy enough for me to just, you know, include you in there so folks can pre-order, so I’ll be sure to do that. And then, yeah, and then we’ll have a link for that to the post as well, so that people can just click right on over. In your situation, what you’re doing is so elegantly simple. And so, you know, most brilliant things are. Because you’re just … you’re whittling it down and distilling it down to, you know, you don’t need to overcomplicate this. That’s what freaking everybody out is it’s overcomplicated in their mind, and it’s too chaotic, and you’re just, like, bringing it down to a succinct, “No, here’s what’s going on. Here’s the predictable thing that you can expect.” And you’re taking something that’s unpredictable and turning it something … into something predictable and more easily managed emotionally for …

Dawn Barclay 09:31 Yes.

Anne Zachry 09:32 … for people who struggle with lack of predictability for, you know, for whatever reasons, which we all do to one extent or another. But I think that there’s very definitely … I know for my families that have to struggle every summer with, “Do we accept the offer of extended school year services from the school district, or do we send our kid to some kind of camp where they could potentially get more, or do we do a family vacation?” and, you know, “What if we want to do all three? And how do we schedule all of that?” And I think that your, you know, your bottom line point that as long as you’re -predicting and you’re front-loading and you’re priming. And you’re thinking deliberately about how you’re going to pace everything that it can be done. And very often, you’ll have kids who do extended school year to work on things like social skills, or their …

Dawn Barclay 10:21 Yes.

Anne Zachry 10:21 … you know, their communication and their behavior. Well, they can also work on those same things if they’re in a national park, you know, listening to the park ranger explain how, you know, what to do if you see a bear.

Dawn Barclay 10:35 True, and there are special passes for those with invisible disabilities for national parks.

Anne Zachry 10:41 Yes, there are.

Dawn Barclay 10:42 I talk about how you get that, and I talk about camping as well. If you want to take a small trip that might start with an overnight in your backyard, just so you can test what camping is like …

Anne Zachry 10:52 Exactly.

Dawn Barclay 10:53 … and then how to gauge … how to evaluate a campground ahead of time to make sure it’s going to work for you. There’s a checklist for that. There are checklists for if you’re going to rent a vacation rental, things you should look for.

Anne Zachry 11:06 Oh, that’s so huge.

Dawn Barclay 11:08 Yeah. And when you talk about hotels, another tip for starting small is maybe just spending a night at a friend’s house with a guestroom …

Anne Zachry 11:17 Yeah.

Dawn Barclay 11:18 … the child can get used to just staying in a different location and sleeping, to see how they adapt to that.

Anne Zachry 11:25 That makes a lot of sense, that makes a … totally makes a lot of sense. Yeah, I mean, it’s the baby steps sometimes before you take the large leap.

Dawn Barclay 11:33 Yes.

Anne Zachry 11:33 And, yeah, and it’s scaffolding, I mean, when you’re when you’re talking about instruction, when you’ve got a child whose functioning below grade level, you just don’t hit them full force with the grade level content. You back up a little bit, and you teach the prerequisite skills that they need to master that might be at a lower level. But if you don’t know that, the bigger thing is not going to make any sense, you know?

Dawn Barclay 11:55 Sure. Of course.

Anne Zachry 11:56 And so it’s you have to take those baby steps and work someone incrementally towards their comfort level, and where they’re at a place where they can master something new. And that’s really what, you know, it’s the same concept just applied to, you know, the real life situation of just going out in the world and participating. And, you know, it’s not really about the academics per se, but the concept still applies to learning how to access the world around you. So I think that’s, you know, obviously, it’s a very transferable concept. And you’ve … it sounds like you’re applying it in a really smart way. I’m excited to see your book now that you’ve told me all these awesome things and planning the things that are in it, because I’m telling you, I have families who are like, “We don’t know what we’re going to do this summer.” And a lot of families who are just like, “We’re just not going to do anything, because it’s too hard to figure it all out.” But if there’s something …

Dawn Barclay 11:56 That’s so true.

Anne Zachry 11:57 … yeah, there’s something they can use that will help … because I think for a lot of moms in particular, it tends to be the case that moms are the ones saddled with the planning …

Dawn Barclay 12:53 Yeah.

Anne Zachry 12:53 … and the logistics, and getting everything together and organizing everything. And just the thought, I mean, I can feel my own heart palpitating. You know, I remember doing Girl Scout events and having to get all those things together. And I know what kind of anxiety is around being the planner.

Dawn Barclay 13:09 There’s been a study where they interviewed 1000 families and, of the ones with special needs, 93% didn’t travel but said that they would if they knew where to go and how to handle it.

Anne Zachry 13:21 Exactly. No, that totally makes sense. Well, I think, you know, this is a huge service for the community of families that we serve, this is definitely information that families need. So I’m excited to share it all out and see what the response is to it once it comes out. I mean that right now it’s preorder so no one’s it’s not available for review at the moment. But it’ll be exciting to see what people say once they’ve gotten a chance to look at it. How have the preorders been going? What kind of feedback have you been getting from people now that you’re going around promoting it?

Dawn Barclay 13:51 Well, I don’t get to see the preorder numbers. However, we did send it to some people … early endorsements for the back cover. And I was very, very happy with what people had to say, especially people who had written books about autism, and they were very positive about it. So that made me feel good, because the only people who had really read it before that was my agent and my publisher …

Anne Zachry 14:14 Right, on.

Dawn Barclay 14:15 … you know, I really hadn’t heard from the community. And when I heard from them, and they felt that this was a very helpful book that made me feel great, because if I get a letter from someone in the future, who’s read this book and said, you know, “Because of what you wrote, we traveled and thank you because you opened up the world to us,” that will have made it all worthwhile for me.

Anne Zachry 14:36 I totally understand that. I mean, that’s as advocates, that’s what we’re doing is, we’re in the business of opening doors for people who otherwise they wouldn’t open for, and it is. It’s incredibly gratifying to realize that, you know, even if it’s something simple, but certainly when you put forth this kind of effort to know that other people are benefiting from it. Yeah, it’s very … it’s just, you know, you’re reason to get up in the morning. I get it, I totally get it.

Dawn Barclay 15:04 It’s true, and there’s so many people out there who don’t know what the resources are, like there are certified autism travel professionals out there who have dedicated themselves to being able to plan trips for families …

Anne Zachry 15:17 Holy Moly!

Dawn Barclay 15:17 … on the spectrum, and there are different certification companies like IBCCES, and that stands for the International Board of Credentialing and Continuing Education Standards.

Anne Zachry 15:31 Right.

Dawn Barclay 15:31 … IBCCES, they created the Certified Autism Centers, and they go around certifying and training different venues to know how to work with the autistic population. And that’s so important, because then you have certain resorts who have dedicated themselves to training their staff to helping.

Anne Zachry 15:50 That is so cool. Well, it’s interesting now that you’re saying all of that, because separate from the work that we do through our advocacy organization, I also have a separate program that I created that we operate, called the Learn & Grow Educational Series, which is part of the ecotourism circuit, and we address food security and sustainable living instruction through project-based learning and modeling. So online and in-person teaching, and we’ve actually got a teaching garden in a space that we use to do that kind of instruction. And that’s something that actually I’d be interested in doing is getting us certified that way, because I’ve already got the master’s degree in educational psychology, I already serve people on the spectrum every day, I understand how to apply the science but having a certification that says, “Yes, Anne knows what she’s doing,” I can see the value in that as well. So that’s really interesting.

Dawn Barclay 16:42 Yeah, I can certainly tell you who to speak to, because not only does IBCCES do it, sorry, I’m tripping over myself …

Anne Zachry 16:50 No worries.

Dawn Barclay 16:51 … there are other organizations that are also starting to certify, like the Champion Autism Network, there’s Culture City, there’s Sensory City, just a number of people who are taking up the cause. But of all of them, I believe IBCCES has been around the longest, and they have done the most work for the certifying …

Anne Zachry 17:10 Right.

Dawn Barclay 17:10 … if you go to autismtravel.com, you can download their most recent list their catalogue of different locations. And what I have done is combined a lot of what they’ve done with other autism friendly resorts and attractions. And you have to be very careful whether it’s certified or autism-friendly, because these things always change …

Anne Zachry 17:34 Right.

Dawn Barclay 17:34 Certifications change. In fact, the new catalog just came out in there are some that are not in my book. And that drives me crazy. So I’ll be running the Traveling Different blog that will update my book. That’s the only way I can live with myself.

Anne Zachry 17:50 I totally get it. Yeah, because once it’s printed, you’re like, “Oh!” and then things change.

Dawn Barclay 17:56 “Ahh! I don’t have that one.” But what’s also important is, and I mentioned that several times in the book is if you see something that says “autism-friendly,” you have to do your due diligence. You have to call them or write to them and find out exactly what that means. What is their training entail? What have they actually done? Because it means different things to different suppliers, and it doesn’t necessarily mean that it will be right for you. And also then you might be autism-friendly on the weekend, or on certain days in the month. That doesn’t mean that they’re always gonna have like autism-friendly days or low-sensory days at a museum every day.

Anne Zachry 18:33 Right.

Dawn Barclay 18:34 It might be one Saturday, a month. You have to be careful.

Anne Zachry 18:36 Right. No. And I know that in the greater Los Angeles area, and that the museums and the different aquariums and things that they’ll have those types of events, but you’re right, it’s scheduled. And it’s only like once a quarter or once … Yeah, so you have to, it’s not like they’re just going to accommodate you like that on the fly necessarily. So …

Dawn Barclay 18:37 Right, you have to make sure that it’s going to happen while you’re there. What I’ve also done in the book that I think it was very important I thought for me is I think most people with children on the spectrum know that they can obsess about a specific topic for up to 16 hours a day. It’s their life.

Anne Zachry 19:13 Yep.

Dawn Barclay 19:13 So what I’ve included is a whole list of museums for special interests that are not necessarily autism-friendly, but they’re going to be autism-friendly for your child because your child is going to be so thrilled to be there, that it might help overcome other obstacles …

Anne Zachry 19:29 Yeah.

Dawn Barclay 19:29 … like flourescent lighting or other sensory issues because I think there’ll be so excited that here … like I talked about one child that was … I don’t know if they were in Montana or somewhere in that area … and there was a mustard Museum, and the kid was crazy about mustard and only talks about his how his parents took him to this museum. So museums all over the country. So say you happen to be going to Cleveland and your child is interested in something you know some oddball …

Anne Zachry 19:58 Yeah, area of interest. Yeah.

Dawn Barclay 20:01 … and that would turn the whole business trip into a really memorable trip for your child because you engaged in their interests. And the trip has to be child-centric. And once you get, you know, that idea that we’re going to build it around the child, I think everything starts to fall into place. So I do include a very large chapter about that, as well as ways to find other museums.

Anne Zachry 20:23 That is so cool, this is really interesting, I’m really looking forward to seeing the book when it comes out. Thank you so so much for tackling this, because you’re right, this is … this has been an area sore need for a long time. And you do have to have that blended knowledge of the travel industry and be a travel insider to be able to speak to what all these different places can do and what your options are, and how you go about asking for those kinds of things. But you have to understand what the needs are in the first place to know that you need to ask, and so, you know, you’re in this nexus between the travel industry and the disability community, you know, making those connections between where the needs of one overlap with the abilities of the other to serve. And …

Dawn Barclay 21:11 Well, and it does take a village right?

Anne Zachry 21:11 So, but you know, it also takes somebody to be that person who ties it all together and, you know, puts it down in writing for everybody to use in the, you know, your role is very significant in that because even though all of these people may have possessed all of this disparate knowledge, it needed to be distilled down into something that the lay public could access and make use of, and that’s where you basically act as a scribe and made that happen. So I think that that’s a gift to be able to take what you already know, and connect with the … with people who are going through these unique circumstances, and be able to create a tool like this. So this was really exciting stuff. Thank you so much for doing the work.

Dawn Barclay 21:11 And I thank goodness for the people who contributed to this book, because this isn’t my story, this is the culmination of over 100 interviews with parents, with certified autism travel professionals, with health professionals like Tony Atwood and Dr. Ellen Lippmann, and different organizations, and different advocates and allies, and all of them taught me so much. And that’s what … I couldn’t have written the book without them.

Anne Zachry 21:39 Thank you.

Dawn Barclay 21:39 I learned so much. I mean, I would have never known that there were therapeutic aspects to diving vacations, or to golf vacations, or to skiing, and there’s so much out there for this population now, because everybody is trying to be so much more inclusive than they were before.

Anne Zachry 22:35 Right.

Dawn Barclay 22:35 So it’s just fascinating that you can go to a dude ranch, and there are ones that will cater to your child, or you can go to rent a house boat, we should really know the safety measures that are involved in that or if you want to rent a yacht, because, you know, if you rent a private boat, you certainly have enough room to bring along friends or family that can help take care of the child. So it’s not only on the parents.

Anne Zachry 23:01 Right, no that’s a really good point, too.

Dawn Barclay 23:04 … all kind of gels together.

Anne Zachry 23:06 That’s really interesting. Now, I will say that a lot of our families are not going to be renting yachts anytime soon. I mean, a lot of folks, you know, what isn’t appreciated very often is the added expense that comes along with parenting a child with special needs, and that, you know, even a middle class family can find themselves struggling just because of those added expenses. So I think that the … you also, you know, talking about these other options, and that where you start small at a more local level, still builds the skills and still gives them that exposure, even if you know, we’re not going to go to Europe this summer, but we’re you know, maybe we’re gonna go, you know, we’re going to drive for six hours and go stay with aunts and uncles in another part of the state, you know, and, and so whatever the scale of it is, really, it comes down to the experience for the child and the predictability of it. And having your ducks in a row in terms of, like you said, planning it and making a child-centric plan about how you’re going to handle your trips, which I think is really smart. I mean, it’s not about saying that any one person is more important than everybody else; it’s just saying that this person’s needs are going to be the most demanding ones we need to accommodate, and at minimum, we need to make sure we take care of x, y and z. And then we can take care of everything else around that and you know, you get those those the hardest things you’re going to have to accommodate out of the way and then everything else is easy going forward. So …

Dawn Barclay 24:32 Right, and I agree with you, not everybody can afford a yacht. I certainly can’t. I do spend a lot of time talking about car travel, bus travel. I talked about how the Autism on the Seas Company has a scholarship or a grant for people who can’t afford to sail on their own …

Anne Zachry 24:51 Right on!

Dawn Barclay 24:51 … if they want to take advantage of an autism cruise. I do talk about how to handle restaurants and how to do camping, so I do include all that information and I’d like to think that this book can help people from, you know …

Anne Zachry 25:05 From across …yeah, across the socio-economic spectrum.

Dawn Barclay 25:08 Yes.

Anne Zachry 25:08 Yeah, because you were talking about camping and things like that. And I’m thinking to like, even if you do make it to Europe, maybe you’re not going to rent a car, you’re going to be using public transportation.

Dawn Barclay 25:17 Right.

Anne Zachry 25:18 And you know, and you’re gonna be using a Europass, or whatever. And so, yeah, so there’s a lot of things that have to be factored in. And everybody’s situation is unique. And yet there’s these things in common that, you know, these unifying factors that if you just attend to these details, then all of the things that are unique, will still be manageable. So …

Dawn Barclay 25:39 And also, like, how to keep safe, how to make sure you don’t lose your child, and safety measures to take. All information like that. That’s so important to have.

Anne Zachry 25:47 That’s so huge. Absolutely. My goodness! Well, this was just a very enlightening conversation. I really appreciate you sharing all of this with me. I’m looking forward to sharing your information with everybody and hearing what they have to say about it.

Dawn Barclay 26:01 Absolutely. My pleasure. Thank you so much.

Anne Zachry 26:03 You’re so welcome.

Anne Zachry 26:04 Thank you for listening to the podcast version of interview of Dawn Barclay, author of Traveling Different: Vacation Strategies for Parents of the Anxious, the Inflexible and the Neurodiverse. 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.

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.

Autism Speak’s Official Video of the 11/14/09 Walk Now

Here is Autism Speaks’ official video of the November 14, 2009 Walk Now in Santa Barbara. (See if you can spot me at our booth for about a micro-second towards the end.)

Photos from the 2009 Walk Now for Autism Speaks

All pictures were taken at the November 14, 2009 Walk Now for Autism Speaks event.

[flickr-gallery mode=”photoset” photoset=”72157622818073786″]

KPS4Parents Interviewed by LRP

I was recently approached by John Haughey, writer and editor for LRP Publications, for our input regarding a due process decision arising from a case in Chicago. For those of you unfamiliar with LRP, it is the publication powerhouse that supplies information regarding special education law, policy, and practices to public education agencies and the attorneys who represent them.

LRP maintains, through its website http://www.specialedconnection.com/, the most comprehensive database of special education due process decisions from around the country, as well as state and federal appeal cases. With a subscription rate for full access at around $2500 per year, only the well-financed generally have access to this otherwise difficult to access public information.

Even so, many attorneys who represent students with special needs and their families will choke down this subscription fee for access to case decisions that provide appropriate authorities for their own work. Other products of LRP Publications are reviews of special education decisions and articles that discuss the subtle or not so subtle nuances of special education law.

Which brings me to the Chicago case about which Mr. Haughey, who is a very nice man, asked to interview me. KPS4Parents very much appreciates the opportunity to lend perspective from the child and parent side of the issue to LRP’s work. For many who work with families of children with disabilities, and who are leery of LRP because of its strong affiliation with the public education agencies and their attorneys, we hope you appreciate that LRP was actively reaching out to hear the child and family side of the issue.

While the way our comments were reported doesn’t provide the full context in which what was quoted was said, we stand behind what Mr. Haughey wrote of our input. Unfortunately, because this article is copyrighted by LRP Publications and you have to be a subscriber to their site to see it, we can’t give you access to the whole thing. However, LRP was kind enough to agree to let us audio record my interview with Mr. Haughey and we were given consent to quote Mr. Haughey’s quotation of me from his article.

The Chicago case was one in which a special education student was awarded compensatory education in the form of placement in a private school for children with learning disabilities at public expense after his school district was found to have denied a free and appropriate public education, or FAPE, to him. In this case, it seems, the school district had placed so much of an emphasis on placing this student in the least restrictive environment, or LRE, that it had failed to consider whether he could actually receive educational benefit in a general education setting.

I was one of several people from around the country interviewed for Mr. Haughey’s article. Also interviewed were a public school principal in Wisconsin and a special education attorney in New Hampshire. While I had the benefit of reading the decision issued by the Illinois Hearing Officer, I did not have access to the transcript of the hearing or the evidence, so I have to take the decision at face value. That said, I know from personal experience that hearing officers are extremely challenged to get all the fact exactly right, so I was still left with some unanswered questions after reading the decision.

It was an interesting read, nonetheless, and what I want to focus on here is the case as represented by the hearing decision. I offer our sincere respect to the family involved in this case, particularly considering that the case reflected in the decision is probably not exactly reflective of the case the family attempted to have tried. I also offer our most emphatic support of the student in this case because it was this young man’s life about which this case resolved. He is the one who will have to live with the consequences of what this case did and did not yield on his behalf. So, to the extent that I’m about to talk about this case as though the decision is 100% reflective of the facts, and I’m about to use it as a generic example for the benefit of others, please do know that we very much understand that this was really about one boy and his right to learn to read, write, and do math and very much appreciate that this family stuck its neck out in an effort to effect change.

The decision in the case at issue here reflected a number of shortcomings that the LRP article, which was brief, did not go into. One of the issues was that the assessment data fell far short of the mark and this young man’s IEP teams were without the data necessary to make informed decisions regarding what was or was not a legitimate offer of a FAPE based on his unique learning needs. So, there was this first undermining of the process that ultimately made it impossible for the rest of the process to be properly executed.

The decision doesn’t specifically speak to whether the parents’ participation was meaningful in the IEP process, but I would argue that an IEP meeting denies meaningful parental participation if the information necessary – that is, data that explains what the student’s needs are – is not made available to the parents so that they can make informed decisions. Likewise, most parents are clueless regarding what data is necessary and how that data should be used. They are left to trust the judgment of school officials who may or may not understand their obligations under the law to special education students.

What was implied by this decision was that the school officials believed it was more important to place a child with an above-average IQ in the general education setting regardless of what his actual learning needs were than to examine the full continuum of placement. The decision suggests, and LRP’s article comes right out and asserts, that there was an emphasis placed on the LRE requirements more so than on what constituted a legitimate offer of a FAPE. I have to question this interpretation to a certain degree. That’s not exactly what I got out of reading this decision.

Yes, it’s true that, according to the decision, the District asserted that it only offered placement in the general education setting because it perceived that setting to be the LRE and that the student didn’t require a more restrictive placement. That may have actually been true.? Where the District may have fallen down was not necessarily?where the services were being provided but whether the proper services were being provided at all. The decision doesn’t address this consideration.

If you go back and look at our blog posts of the past and read the articles regarding the IEP process, you quickly come to understand – if you didn’t already know this – that services and placement are the last things discussed by the IEP team. What drives the selection of services and placement is the goals. The goals describe your intended outcomes of intervention and services and placement are the vehicles by which the goals are meant to be achieved. To the extent that the child can receive services such that his goals can be achieved in the general education setting, placement in the general education setting with non-disabled peers should occur.

In the Chicago case, it was not clear from the decision that there was any examination of what services could have been provided in the general education setting that could have seen the child benefit from his education. The decision reflects that only accommodations and modifications were made in the general education setting, not that services were pushed in or provided as supplemental supports.

Now, that said, this had apparently been going on for a while. As a result, the student had failed to receive educational benefit for years. By the time his case got to hearing, he was due compensatory education to make up for the years of lost educational opportunity and, at that point, the only real way to provide him with that kind of remedial support was to put him in a very restrictive setting, that being a private school for children with learning disabilities.

There very well may have been a time when placement in general education with appropriate supports and services would have rendered educational benefit and prevented all of this from ever happening. But, we’ll never know. The decision doesn’t speak to what would have been a FAPE for him in the past. It only speaks to the harm done by the District’s inappropriate offers of only accommodations and modifications in the general education setting for this student and the fact that compensatory education is now due to the student as a result of that harm.

This brings me to the next consideration: the use of the term “LRE.” As we’ve stated in blog articles before, the LRE?- the least restrictive environment – is the setting in which the student can receive educational benefit with the most exposure to typical peers and the typical school experience as possible. It’s relative to the student’s unique needs. This was the aspect on which I was quoted by Mr. Haughey in his article for LRP Publications.

Mr. Haughey wrote that I said, “LRE is relative — relative to the needs of the child,” which is true. Mr. Haughey went on to write: “Zachry advises parents to ask these questions in determining if the general ed placement is appropriate for their child: ‘Is it going to achieve the outcome you are looking for Are we leveling the playing field, or are we putting him on a completely different playing field?'” ?This advice actually was intended for the entire IEP team, not just parents.

Mr. Haughey also wrote that I said that parental pressure often can allow institutional bias for mainstreaming to go unchallenged, but did not include the context in which my statement to that effect was actually couched. This is something I want to clarify before my words are used to fuel the anti-parent bias that already pervades the public school community, and which some attorneys who represent public education agencies actually exploit for their own financial gain.

It is true, and I’ve written in our blog on this before, that most parents really do not understand the special education process. That’s one of the reasons we publish our blog in the first place. It’s also true that far too many professionals in special education really do not understand the special education process, either, which is another huge reason we publish our blog.

People on both the school and the parent sides tend to put placement before everything else, treating special education as a place rather than a service, even though placement is only one aspect of a special education student’s program and the last thing the IEP team should consider. So, again, we have this case out of Chicago and the attention that LRP is giving it that both focus on the placement more than anything else and I can’t help but wonder about the message this is sending to the folks in the public education community. Does this reinforce the false notion that placement is the only really important thing to talk about and that present levels of performance and goals are just procedural fluff?

It is also true that there are a great many parents out there who, in the process that parents follow in coming to terms with being told that their children have handicapping conditions, are in a stage of denial and, in their ignorance, think of special education as a place rather than a service to help their children learn. These parents view special education as a label – a “Scarlet Letter” – that will brand their children as though it is somehow advertised who and who is not on an IEP.

That isn’t to say that there aren’t insensitive clods in the public education system who have no sense of student confidentiality, but for the most part, public school employees do not go around blabbing students’ personal business to the other kids. Generally speaking, kids with learning disabilities and other “hidden” handicaps blend in with everyone else and no one knows they’re on IEPs unless they tell their peers themselves.

So, the parental fear of the child being labeled is often a rather irrational one. But, it’s also a natural stage of the process that every parent goes through. Sometimes it’s a fleeting moment before the parent moves to the next stage towards acceptance and proactive involvement, but sometimes parents get hung up at this stage for a while – or even indefinitely.

Like the stages of grief, how long a particular person spends at each stage of the process depends on that person’s individual growth and development as a human being. It’s unfair and inaccurate for school personnel to presume that all parents are in denial. Most parents of children with special needs experience at some point a great deal of relief of finally understanding what is going on with their child so they can start constructively coming up with a game plan. They get past the denial at some point.

But, while parents are in that denial phase, they are often resistant to the application of the term “special education” to their children, particularly if they are in denial at the time that their children are found eligible for special education services. They envision the proverbial “retard room” from their childhood educational experiences and can take any identification of eligibility for special education as a condemnation of their children’s potential. This is truly unfortunate. Within this context, it is true that parental pressure often can allow institutional bias for mainstreaming to go unchallenged, as Mr. Haughey reported.

Sometimes, however, it is the student’s bias that’s the problem, which Mr. Haughey and I discussed during the interview, as well. Sometimes the student doesn’t want to be placed in a more restrictive setting out of embarrassment, but is also embarrassed in the general education setting by not being able to keep up with peers. In a situation like this, you’re damned if you do and damned if you don’t. That’s a really hard problem to overcome and usually comes down to the parents telling the student, “Look, this is the way this is going to go down and you’re just going to have to deal with it,” regardless of what the placement determination turns out to be.

In other instances though, and from what I could gather from reading the Decision in the Chicago case such was the situation there, the parents don’t really care so much about where services are provided so long as their kids get the help they need. The Chicago case seemed to me to be about a family asking for help for their son and not getting it, and the denials for help by the District being based on an inappropriate application of the LRE requirements.

Truthfully, what I suspect but would need evidence to know for sure, is that the District probably didn’t want to pay for the intensive remedial services this student needed and used the LRE as an excuse to deny them. Otherwise, no one at the District had a clue about what LRE really means and requires. Special education noncompliance tends to arise out of ignorance, petty politicking, or a combination of both. As with any due process case, we’ll never really know all of the truth about this situation, but we appreciate the opportunity to examine it and hope that my analysis provokes thought on the part of others to make the special education system better.

California SLPs Sometimes Confuse Legal Requirements

Today’s posting will hopefully lay to rest a misunderstanding that seems to plague special education in California. I can only presume that, like many other “urban myths” that root themselves in special education lore, at some point in time, somebody somewhere in California conducted a training seminar on speech-language assessment and services within special education and miscommunicated something that has now led to speech-language specialists throughout the state making improper conclusions to the detriment of some children in need of speech-language services.

The problem is this: the distinction between who is found eligible for special education on the basis of a speech-language impairment (“SLI”) and who qualifies for speech-language services as a student already eligible for special education under any other category. Eligibility for special education as SLI is not required in order for a child otherwise eligible for special education to receive speech-language services in order to benefit from his/her IEP.

The critical piece of legislation, which gets erroneously cited in speech-language assessment reports all the time, is 5 CCR  3030(c). Title 5 of the California Code of Regulations Section 3030 describes all of the criteria for each of the eligibility categories under which a student may qualify for special education and related services. These categories include Specific Learning Disability (“SLD”), Other Health Impaired (“OHI”), Emotionally Disturbed (“ED”), and many others, including SLI. The critical thing to understand here is that the 3030s describe who can receive special education and on what basis, not what services they will get.

What ends up happening, though, is a child will be assessed for special education purposes and a speech-language assessment will be conducted. In the course of the overall assessment, even though the child is found eligible under some category other than SLI, because he did not score below the 7th percentile on two or more speech-language assessments, the speech-language specialist will determine that he doesn’t qualify for speech-language services according to 5 CCR   3030(c). It is a complete and utter misapplication of this Code, which deals strictly with eligibility under SLI and not what services an otherwise eligible child should receive.

A typical example of this would be a child who is eligible for special education pursuant to 5 CCR   3030(g) for autistic-like behaviors (in special education in California, a medical or psychological diagnosis cannot be made by the school psychologist, so this section of the code provides alternative language and defines the criteria by which a special education eligibility category can be identified for a child exhibiting the symptoms of autism), but who is relatively verbal. While his scores may hover just above the 7th percentile on the speech-language tests he was administered, they are still very low and his low language functioning compounds his other problems arising from the other needs arising from his handicapping condition.

In this example, anyone in their right mind can see that the child needs pragmatic (social) language intervention and help with idiomatic and figurative (non-literal) language. He doesn’t have any friends, he doesn’t get jokes, and he doesn’t understand clichs and colorful sayings, such as “Clear as mud.” This makes it difficult for him to participate in group projects with peers and understand the writings of Mark Twain. He needs goals that address these areas of need and speech-language services in order to benefit from his IEP.

No subsection of 5 CCR  3030 drives the selection of services that any child gets, only whether or not a particular child is eligible and, if so, under what category. The IDEA mandates that children who are eligible for special education, regardless of what category they qualify under, receive whatever supports and services are necessary in order to afford them a FAPE.

Specifically, the federal regulations found at 34 CFR  300.320(a)(2) state that IEPs must include for each child measurable annual goals, including academic and functional goals designed to meet the child’s needs that result from the child’s disability to enable the child to be involved in and make progress in the general education curriculum and meet each of the child’s other educational needs that results from the child’s disability.

An eligible child is a child who requires, as a result of one or more handicapping conditions, special education and related services in order to receive educational benefit. 34 CFR  300.39 “Related services” is described at 34 CFR  300.34. In none of this is there anything that suggests that the only way that an otherwise eligible child can receive speech-language services is if he is also found eligible as SLI.

In fact, 34 CFR  300.304(c)(6) states that, when evaluations are conducted for special education purposes, they must be “sufficiently comprehensive to identify all of the child’s special education and related services needs, whether or not commonly linked to the disability category in which the child has been classified.” Congress understood when it crafted the IDEA that you don’t individualize a child’s program by resorting to “cookie-cutter” strategies that are based on a kid’s eligibility category.

The IDEA is the skeleton of special education law. It establishes the basic framework and minimal standards. It is left to the states, if they want any federal special education dollars, to add the flesh to the bones by creating their own state-level legislation that explains how each state will implement the requirements of the IDEA. While states are free to add more obligations to their schools than what the IDEA requires, they are prohibited from reducing the protections offered to students and parents under the IDEA lest they sacrifice their funding.

What this means for speech-language services to special education students in California is that the IDEA basically says each eligible child must get whatever he/she needs in order to receive educational benefit, regardless of what type of services are required and regardless of the applicable eligibility categories. That’s the whole concept of individualizing a child’s education plan based on his/her unique educational needs.

There is nothing at the state-level that reduces this federal mandate, nor could there be unless California were to choose to go it alone to cover its special education costs and we all already know that California can’t pay its bills even with the federal funding it receives. It absolutely cannot afford to give up its federal special education funding.

We’re curious to know if there are any other state-level debacles involving misinterpretations of the law happening elsewhere. Readers are encouraged to post comments to this posting about such misinterpretations that may be occurring where they live.

What is a Serious Behavioral Problem?

Today’s posting is a podcast in which I discuss what constitutes a serious behavioral problem within the context of special education. Contending with aggression, assaultiveness, verbal outbursts, noncompliance, off-task behavior, inattentiveness, elopement, and other problem behaviors is no small matter.

Equally important, but less often addressed, are more passive behaviors that impact learning, such as sitting quietly without asking questions when the student doesn’t understand what is going on rather than asking for the information to be repeated or rephrased and requesting clarification.

Please do post your comments and questions. We want to bring you the information you seek about special education-related issues and need your feedback to help guide our selection of content.

Serious Behavioral Problems podcast- Part 1
Serious Behavioral Problems podcast- Part 2

34 CFR  300.34
34 CFR  300.304

How Special Education Services are Supposed to be Selected

Several of our prior postings have emphasized that services are selected based on what will see a child’s annual IEP goals accomplished. Placement is determined based on how the services necessary to achieve the goals can be delivered in the least restrictive environment possible, so a discussion of services has to include some discussion of placement, though we’ll be talking specifically about placement in our next posting.

 

Today’s posting concentrates specifically on the process that an IEP team goes through (when things are done properly) to identify the services necessary to achieve a child’s annual IEP goals and how they can be described in the child’s IEP.

 

As we discussed in our posting, “Why Placement Isn’t Where You Start: Understanding the IEP Process,before parents can legitimately advocate for more service hours of any particular kind, they have to examine the goals and ask themselves, “Is the amount of services being offered consistent with what needs to be done to achieve the existing body of goals?” If the amount of service hours matches what is necessary to achieve the goals the child already has, the next questions are “Are more goals needed? Have we failed to address a need?”

 

This is often where the real problem lies when parents are insisting on more service hours in any particular area of need. For example, I’ve heard more than once, “My child can’t write! He needs more OT!” but there are not sufficient writing goals in the child’s IEP. So, we have to back up and address the goal deficiencies so we can then increase the OT hours to see the new additional goals met.

 

Parents really need to understand this because there are instances in which less-than-ethical education professionals will play games. Here’s what it looks like:

 

Parent: My child needs more speech-language services!”

Ed Pro: “But the speech-language services we’ve offered to your child are appropriate to meet his goals.? What would more speech-language services accomplish?”

 

This is a loaded question! If you know the rules, you interpret this question to mean, “Do you think your child needs more speech-language goals “If you’re a lay person, however, you’re likely to miss the subtleties, become incensed, and cry out, “My child is non-verbal! He needs more speech-language services!” If game-playing is going on, the conversation will stalemate as a vicious circle of “He needs more!” and “What would that accomplish ” without any explanation forthcoming from the educational professionals about how goals drive services, so more services require more goals. 

 

Once the goals have been hammered out, then it’s time to determine services. This includes not just how much time will be devoted to services necessary to meet the goals, but also the location and method of delivery. A comprehensive speech-language service model may include a small amount of time in individual speech-language services, some group speech-language services, and speech-language programming embedded in the classroom setting, for example. 34 CFR   300.320(a)(7) requires that the frequency, duration, and location of each type of service offered be described in the IEP.

In this example, this means that the frequency, duration, and location of the individual speech-language services would have to be described separately from the frequency, duration, and location of the group service and the frequency, duration, and location of the embedded speech-language services. Even though they all address speech-language needs, each type of intervention is distinctly different from each other and, therefore, must be regarded as an individual service offering.

 

Parents should be leery of an offer in a situation like this where the IEP states something like:  “90 minutes per week speech-language services, individual/group/embedded programming.” This language fails to delineate the frequency, duration, and location of each aspect of the speech-language intervention, meaning that the delivery of the services is left entirely up to the discretion of school site staff.

 

The problem with this lack of specificity is that it is the nature of a government bureaucracy, which the public education system is, to default to whatever requires the least amount of effort on the part of the government workers. What is provided to a child becomes driven by how existing resources within the education agency have been allocated rather than the unique needs of the student. This is why federal law mandates that frequency, duration, and location be specified in the IEP in the first place; Congress had to have been aware of this aspect of bureaucracy when it crafted the Individuals with Disabilties Education Act (“IDEA”).

 

Yet another consideration is where the services will be rendered. Another point made in our posting, “Why Placement Isn’t Where You Start: Understanding the IEP Process, was that placement comes at the end of the line for a very logical reason. You have to know what you’re trying to accomplish before you can determine where you can accomplish it. That means you need to know what services need to be delivered.  Once you know what the services are, you can figure out what placement is the least restrictive environment in which the services can be rendered relative to the unique needs of the individual child.

 

In our example above, we described some individual speech-language, some group speech-language, and some embedded speech-language programming in the classroom setting. But, what classroom setting is appropriate and how much of the services are to be pushed into the classroom rather than provided in individual and group services? What is the relative value of being surrounded by typical peers and their age-appropriate language skills versus a special day class with speech-language programming built into the curriculum by default? Can embedded speech-language services be successfully pushed into a regular education setting with 1:1 aide supports or can the services be more successfully delivered in a special education class?Do the embedded speech-language services need to happen all day long or just part of the day?

 

You can see that making determinations regarding services require a lot of thought. An awful lot of variables have to be taken into consideration, not the least of which are the goals that the services are meant to accomplish. The tolerance levels of the child for various stress levels and sensory input have to be considered along with the LRE requirements. Special education students cannot be pulled out of the regular education setting unless there is absolutely no way to feasibly push the services they need into the regular education setting. 

 

Even in special education settings there is a continuum of placement that has to be made available with the least restrictive setting chosen relative to each child. This means that a blend of various settings may be necessary to offer the services in the LRE. For example, a child could receive some services pushed into the regular education setting for part of the day, other services in one special education setting for another part of the day, and yet another special education setting for the rest of the day.

 

Until the services are identified, placement decisions cannot be made, though it is perfectly fine to discuss services and placement at the same time so long as the team maintains proper perspective. Because they are so intertwined, it’s actually pretty hard to discuss services without also discussing placement.

 

The caution that has to be taken when discussing services and placement together is making sure the IEP team doesn’t limit services based on how resources have already been allocated within the education agency. When the team starts talking about the need for counseling services three times a week for a student and the school psychologist says, “But I’m only on this campus once per week,” you’ve got a problem to overcome. 

 

What goes into the IEP and what must be provided must be based on the needs of the child. If the way staff and resources have been allocated do not support what the student needs in order to meet his goals, the staffing and resource allocations have to change; the services offered to the child should never be short-changed on the basis of resource allocation issues.

 

This is not to discount the enormity of the responsibility of education agencies to deliver on these requirements. Education agencies that actually pull it off are accomplishing miracles on a daily basis and their teams of professionals are mostly unsung heroes that deserve at least as many accolades as the entertainment industry heaps upon itself through its various awards ceremonies.

 

Coordinating the services required by all of an education agencys special education students to be delivered in what represents the LRE for each individual child can seem to be the logistical equivalent to Santa delivering presents to every child on the planet in one night. This is why States’ education agencies are still on the hook for the provision of a Free and Appropriate Public Education (“FAPE”) to their constituent students and local education agencies should be hitting up their State education agencies for as much help as possible.

 

Our next posting will focus more specifically on placement. Please comment on today’s posting and let us know your thoughts.